October 17th 2018
I want to thank everyone from the bottom of my Heart for everything you have done for Gary over the past 7 years. Unfortunately Gary's battle with cancer has ended. Gary passed away peacefully in his sleep early this morning. I will update with service info asap.
October 9, 2018
Well unfortunately that time has come where Gary is no longer able to write these updates. I know I have some huge shoes to fill, but from now on I will continue to keep you updated. I am so sorry to say Gary is at a point now that the cancer has taken over. He is resting comfortably in the hospital with his family by his side. We are hoping to have him moved into hospice later today where he can spend his last days in comfort surrounded by family. I will continue to keep everyone posted. I just need to add that Gary is the strongest person I have ever had the honor of knowing. Bro your are truly amazing.
luv ya kiddo.
July 31, 2018
Well it’s been a while (a LONG while) but it’s been a fairly quiet few months with no major news to share so I figured I’d give you all a little break. However, had an appointment yesterday with my Oncologist, chemotherapy (scheduled but never actually was infused), and got the results of my most recent CT SCANS of the chest, abdomen, and pelvis, and felt it was time for an update to share the news.
First of all, just to bring things up to date...as stated it’s been a relatively quiet few months of on going chemotherapy. I’ve had 74 infusions to date (the most my experienced Oncologist can recall giving to one person) over a SEVEN year period. I have been to the ER a handful of times since my last update for dehydration from the chemo’s side effects, and elevated BP and pulse (despite taking 3 BP meds daily). Thankfully MOST of the ER visits have resulted in IV fluids to rehydrate me, meds for the BP/pulse and being discharged a few hours later. Twice I was admitted to continue treatment as it took a bit longer to control things but the hospital stays were only for a day or two.
Also new (unfortunately) has been a TERRIBLE pain under my left ribs that has continued to worsen with NO relief regardless of the various treatments/meds tried. It seems like it is likely caused by the cancer in my lungs and unfortunately there is not much to be done about it. I will spare you any type of comparison to describe the pain other than to say that the worst pain I have ever had has been 3 bouts of kidney stones. For those of you unlucky enough to have had kidney stones you know what it mean...this is worse. There is just NO relief or comfortable position. It just hurts.
Anyways, thankfully Tara has been doing well and other than a few short hospital stays for her (adrenal crisis), she has managed to avoid anything major. Abby and her fiancé Matt have been doing great and enjoying their summer. They are both VERY hard working and seem to be Home rarely. When they are both off from work they spend as much time together as possible and are a lot of fun to have around. As for Ally...it’s been so awesome to have her home on her summer break. She brings a lot of smiles and laughs to the house and has spent her time meeting up with old friends and spending time with them. She seems to be enjoying herself. Abby turned 22 last month and this coming Friday Ally will turn 20. Where did the years go????
We had quite a few family graduations this year and Mom and Dad came up from Florida to be here for them. We had nephew Devin, niece Jessica, and niece Andrea all graduate from college and nephew Aidan graduate high school. I am so proud of them all!!!
Now for the bad news...unfortunately the recent scans showed continued growth of the tumors in both lungs and a few (although very small) new spots (also in the lungs). I find myself getting short of breath with much less exertion than previously, and again the worsening of the pain apparently stemming from the cancer in my left lung. According to my Oncologist yesterday, after 74 infusions of chemo, it would seem that my body has stopped responding to the current regimen. I suppose after all this time and all the chemo I really can’t complain and consider myself lucky to have gotten what I did from it. And so, on to the next attempt to keep things controlled. That will consist of an oral (pills vs. IV) chemotherapy. many of you may have heard about a new cancer treatment called immunotherapy. Unfortunately, given my specific Cancer and it’s specific “mutations”, I am not a candidate for such treatment. The oral chemo will consist of taking the chemo M-F followed by 2 days off, repeat, and then 2 weeks off and start over again. Apparently the side effects (unfortunately) are pretty much the same as what I’ve been experiencing with the IV infusions but...we’ll see. I think that’s pretty much it. Unfortunately, any change in treatment is one less option I will have available to me in the future, and as I said earlier, I really can’t complain after getting seven years from my last meds. So that’s about it for this update. Not the best case scenario but on to the next chemo. I will update this site after a bit of time on the new treatment to let you know how it goes.
As usual I would like to thank you all for caring enough to read these updates and for all of the love and prayers, and support (emotionally, financially, spiritually, etc. ) I literally couldn’t do this without your help. And an extra special THANK YOU to one person who I refer to as Ben E. Factor for his continued generosity/support. He wishes to remain anonymous and I will respect his wishes. He is the same person who paid for our family trip to Disney and he continues to support us in so many different ways. We appreciate his generosity and will never be able to thank him enough. I also don’t want that to take anything away from all of you. A simple prayer or note of encouragement can sometimes mean as much as a financial donation. I guess it really depends on where your mind is at and what you need at any given time. Sometimes, when feeling a bit down, a simple note of thought or encouragement can seem worth as much as a thousand dollars. And so I thank you all from the bottom of my heart. We are so blessed to have the family and friends that we have. And so again THANK YOU ALL and will update here again when there’s anything worth updating. God Bless!!
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October 31, 2017
First of all, Happy Halloween to all buy particularly those of you with little ones. My girls are a bit too old for trick or treating and boy do I miss those days. Nothing by fond memories of spending Halloween either making their way around the neighborhood or the many years spent heading out with their similarly aged cousins and spending the evening together as a group, doing their thing. What a terrific holiday!!
Now on to the news/update since my previous entry. I typically start off an update explaining that there is both good news and bad news. I feel that while this entry also has good and bad...BOTH ends of the spectrum seem to be even more heightened/powerful than usual. Let’s start off with the good...as you all may know from previous FB updates we returned from our AMAZING, truly ONCE IN A LIFETIME trip to Disney World (Completely financed by our benefactor/guardian angel who’s only caveat was to remain anonymous, even in regards to Tara and the girls). Words alone just have yet to be designed to truly describe the emotions generated by such an experience. As for the experience/trip itself...WOW! I have become almost obsessed with trying to find ways to create positive, strong, happy memories for the entire family that will far outlive me (40 years from now of course). This trip provided us that, and way more. We had the best time and far exceeded our high expectations.
And just when I thought that things couldn’t get any better emotionally...3 weeks later Matt (Our eldest Abby’s boyfriend) approached me and requested my blessing in his asking for Abby’s hand in marriage. So...this past Friday Abby and Matt got engaged. As a family we couldn’t be happier as they seem made for each other and Matt is most definitely all that we would want as a partner for Abby. He is kind, respectful to both Abby and us, hard working, intelligent, etc. I could go on but I think you get the gist. As for me..having been given 2 1/2 years to live (and I’m going on 7 years as of this February) I never thought I would live to either have a trip like Disney OR to see our daughters get married. So in one month I’ve been able to check off not one but two “bucket list” items. What a month!!!! In addition we continue to be amazed, Happy, and proud each and every time we speak with our “baby” (hopefully she won’t kill me for referring to her this way but she will always be my baby girl) Ally. Each call includes a reference to another quiz, test, or paper coming back attached to an “A”. Between time missed while in Disney, all going on at home, a packed full schedule of classes, and working I am simply in shock of how she manages all of this while still getting all A’s. We are so proud.
And thankfully to top it all off, Tara has been able to remain fairly healthy during this period without any ER trips. We are in the process of trying to arrange a follow up with the neurosurgeon to discuss the possibility of radiation treatment following her recent surgery to assure that the entire tumor was removed as she does continue to suffer from some RELATIVELY small on going concerns but nothing urgent.
I would be remiss this month in particular, despite their on going support/assistance, if I didn’t give a specific thank you to Tara’s sister Tammy and her family. As you may recall we are still struggling to cope with having only one car to share between Tara, myself, and Abby. As Abby works full time (luckily she works one weekend day and has one day off during the week..thursdays) Her needs are the priority. This makes it a nightmare trying to schedule Tara’s and my myriad doctor, chemo, medical appointments. We TRY our best to work around the schedule or trying to figure out drop off’ pick up’s etc. although inevitably there are such occasions where it’s just not possible to arrange/rearrange necessary apts (for example my chemo apts are every other Monday and just not possible to rearrange). Anyways, when all is said and done we have had to rely on asking for some assistance and Tammy and family have been great at lending us a car to be able to make the apts. they have done so immediately and without complaint. We are in their debt (along with being in the debt of many/most of you) and VERY thankful, and once again reminded of the importance of family in general and specifically, incredibly lucky to have the family we have!!!
Ok now for the bad news...since my diagnosis (again almost 7 years ago now) the chemo break I took for Disney constituted my third “substantial” chemo break. The previous breaks resulted in relatively significant tumor growth corresponding with each break. Given these experiences I was not really expecting positive results to come from these most recent CT scans (taken last Thursday). While my expectations were low, I WAS expecting similar results to the others. The previous results being approximately a doubling in size of the tumors. I was able to “accept” these growths with little cause for concern given the relatively small size of the tumors to begin with. I should explain that even while on the chemo, the tumors have kept growing, but thankfully given their size and the aid of my chemo regimen SLOWING DOWN the growth, I am where I am. As explained many times, my Cancer is stage 4. The chemo is NOT a curative treatment but rather a treatment tool to help delay the inevitable UNTIL A CURE IS FOUND! Each successive scan reveals either a negligible increase in size which presents upon review as almost no growth OR a definable yet quite small growth. So while the tumors have never stopped growing The only really significant growth has come during these breaks. Before giving the results of the recent scans let me say this...my Oncologist (chief of Oncology with MANY years of experience is in complete agreement) highly believes, as my own experience supports, that if I am to be on chemotherapy for the remainder of my life...physically, emotionally, mentally, and spiritually, it is absolutely necessary for occasional breaks from treatment. Despite the progression of this horrible disease there does become times where my mind and body tell me (and will continue to do so) that a break is necessary. I was asked recently if, in hindsight, the Disney trip was unwise. To this I say unequivocally, HELL NO! Not even in hindsight. Aside from being an amazing experience with memories and experiences we will all remember forever, I NEEDED the break. Keep in mind that chemo comes with immediate AND cumulative effects. My body, nausea, vomiting, pain, diarrhea, confusion, memory loss, etc. were at a point where I just couldn’t go on. As stated on FB I am up around 60 chemo infusions now which even my doc said “must be some kind of record”, and no end in sight. It was time for a break and I couldn’t think of a better way to spend it.
Now for the results...unfortunately the tumors increased in size significantly (more than doubled). They are now at the point that even back on the chemo, even relatively small growth going forward will continue to be problematic. Where previously my body could “accept” some small amount of successive growth with relatively minimal effects upon functioning.....this is no longer the case. These issues are starting to arise. I have noticed the development of an annoying cough recently in addition to occasional bouts of wheezing and shortness of breath. Upon review of the scans the doc reports a semi significant build up of fluid in one lung. This apparently is NOT a pneumonia (which while bad could at least be treated and eventually cured) but rather directly related to the cancer and my lungs’ inability to “do their job” and resolve issues like this.
In short, it puts into question whether
The current chemo regimen is still gaining me much in the way of treatment. That being said I DID have my break and only one infusion prior to the scans so it is a bit of a question at present. So we decided to continue with current regimen for 2 months and rescan. If my symptoms worsen OR if the next set of scans show either no improvement or ANY disease progression we will assume the current regimen no longer efficacious and will switch and try a new chemo regimen. Aside from the obvious reasons this is all....not so great..there are only a few limited number of chemo regimens I have available to me, “knocking” any of them off the list isn’t a welcomed endeavor...but if it ain’t working, it ain’t working. I will keep you updated in about two months from now.
In the meantime, yesterday was my second infusion post-Disney and I type this update laying on my couch hooked up to my chest port while I receive my 2 day “take home dose” eagerly awaiting tomorrow when I can put this “session” behind me and get on with the recovery period.
And finally, once again I remind you that there are occasions when much needed donations are deposited in our bank that unfortunately the process used keeps the deposit as anonymous to us. I don’t know if this is done purposely or just a result of bank policy but to those of you who have made any donations and NOT received a personal thank you....we thank you from the bottom of our hearts and please know that a lack of a thank you means we didn’t know who you were. Any and all donations are EXTREMELY appreciated/necessary in allowing us to pay rent, meet our bills, provide for day to day expenses (food, gas, etc), pay our medical expenses (travel, copayment, medications, etc..). The last thing we want is for ANY one of you to feel as if we didn’t fully appreciate your sacrifice/donation on our behalf. We simply and honestly couldn’t survive (literally and figuratively) without the help from you, friends, and family, and we thank you again!
Well I guess that’s about it (enough isn’t it?). As stated at the top it’s been a pretty powerful month both good and not so good, but it is what it is and if we r going to accept the good, we have to be ready to accept the no so good.
I will update again should any changes arise but at the latest I will update following the next set of scans.
Thank you all again!!!
Love GaryAugust 24, 2017
Well as usual and likely true for everyone else, we've had a couple of months of ups and downs, good and bad... I guess the logical place to start this update is with me medical "situation". Thankfully most of this is "good". My CEA level has continued a path of decrease. Again, neither I nor my Oncologist has any explanation as to its cause but all are in agreement that decrease is certainly better than increase so don't look a gift horse in the eye...just be happy about it. I think the best POSSIBLE explanation/guess comes from my father. During the period of time that my CEA was rising, my diabetes was "out of whack" and my glucose (sugar) levels were sky high, while recently my glucose levels have fallen and are better controlled as my CEA levels have dropped. We know that Cancer LOVES and THRIVES on sugar so it makes some sense that high sugar would lead to an increasing CEA while lower sugars would lead to decreasing CEA. Good thinking Pop and it makes as much sense as anything else.
Next was my CT scans. As you may recall, these are done periodically. Usually I will have 4-5 chemo infusions followed by CT scans to check on the effectiveness of the chemo. As has been the case of late, the CT scans show the lung tumors to be present and growing but VERY slowly. We know the chemo is not curative in my case but as long as it keeps the cancer growing SLOWLY, that's a positive result for me and was the case with this most recent scans. Tumors are present and growing but SLOWLY. It's basically a race between the slow growing cancer and the professionals finding a cure. Giddy-up researchers...giddy-up. Otherwise we are on to chemo infusion number 55 this coming Monday.
Also on a positive note...you may recall my mentioning a private benefactor who has offered to pay 100% of the cost of the family to take a trip to Disney world. We are SO grateful as you could imagine. Anyways we are scheduled to leave the beginning of October for a ten day stay. Given this I've decided to make Monday my final infusion until we return from our trip. This will give me a nice break before we leave to be able to recover and regather my strength before the trip so I will be feeling good and able to fully enjoy this blessing. Probably not the SMARTEST plan as far as the cancer is concerned as in the past, a lengthy break from chemo leads to a fairly significant growth period for the cancer. BUT...I just feel that I need this break and sometimes quality of life has to come before any other considerations. The cumulative effects of all of these infusions just has me worn out and in need of a break for the sake of the entire family. It'll do Tara and the girls good to see me back to myself for a little bit. The chemo infusions effect them as much as me. It's tough on them to see me so sick and so weak all the time. To see me with a little "pep in my step" again can only be good for them as well.
Ok, more good news...Tara, while not consistently feeling 100%, has NOT been hospitalized for anything since my last update and overall has been doing well. As usual, there are good days and some that are not so good but again, overall, she's been doing well.
And the girls (Abby and Ally)... well what can I say? They continue to thrive and bring some "light" into our house. Ally will be heading back to school (Honors College at UMass) in a few weeks, and while we miss her terribly, we are so proud of her and so happy that she gets an opportunity to get away from all of the sickness, doctors, infusions, etc.. She deserves it and we love hearing about all of her exploits and experiences. And Abby...her and Matt (her boyfriend) are still living with us and are both AMAZINGLY helpful. They too make us so proud. They are both working in jobs they like, making money and enjoying each other's company. We couldn't be happier to have them around.
Ok..the "bad" news. as usual the only negative seems to be financially based issues. Somehow, Tara's insurance (Medicare) seems to have been cancelled. We are dealing with both Medicare and Social Security and Masshealth to determine exactly why and how we get it back but dealing with all of the state and federal agencies means dealing with A LOT of red taper that is time consuming and frustrating. The main issue is paying for her medications. Unfortunately these are life sustaining meds that she NEEDS so we can't just "blow them off". We've been forced to be paying out of pocket for them which leads to paying about $500-600 per month just on the meds she NEEDS nevermind those that are more voluntary in nature. It just gets so overwhelming sometimes. And finally, we just heard from the mechanic today that Abby's 2005 Hyundai needs a new transmission which is estimated at $2-3 K. Not sure what we r going to do as again, we just learned this earlier this morning. Don't know if it's worth sinking that kind of money (which we don't have anyways) into a 2005 car with high mileage. Anyways it's gonna be like putting a puzzle together to figure out how to get her to work and back everyday until we decide what to do and take action. We'll figure it out as we always do but it's just one more piece of stress that none of us need.
So that's about it..that's the good and bad, long and short of what's been going on in our lives.
Finally, SO MANY of you have been so helpful/supportive of us. Be it money, household goods, Disney vacations, thoughts, prayers, emails, Facebook messages, texts, etc...I just couldn't possibly list everyone individually. It'd make this update PAGES longer than it already is. But, YOU know who you are and we know who you are and I want to THANK YOU from the bottom of our hearts for your support. As usual, I truly don't know what we'd do without you but I DO know how special you are to us and how much your support means to us.
So that's about it for now. Will likely make my next update upon our return hopefully full of positive, happy news. Thank you all
Monday June 19,2017
Well here we are...another milestone reached...as I type I am attached to my chemo infusion number FIFTY (50). My reward?....I get to come back in two weeks for number 51. That's about it. No other reward just keep on grinning and grind them out.
Before any update I want to take a moment to wish all of the fathers out there a happy Father's Day. I was lucky enough to share some time on Saturday with my father and am VERY grateful to have had that time together. In addition a very happy graduation to all of you who are, or have, kids graduating from all levels of education. My family was lucky enough to have numerous graduates this year on both sides of our family and we are proud of and happy for all of them. We are blessed with some smart kiddos in the family and it makes us so proud to see them doing their thing. Congratulations.
Now...on to the update.
Over the past couple of months my CEA level had spent a decent period of time rising with no explanation as to the cause. Typically the CEA Level measures the amount of Cancer fighting antibodies in one's system. A rising CEA level is usually associated with a growing/spreading cancer. With this in mind I have undergone head to toe (literally) CT scanning, X-rays, PET scans etc...searching for such a growth/spread of the Cancer. All to no avail. Bewildering to my Oncologist, no major changes were discovered, neither positive nor negative. The cancer we know about is still there and present and as has been it's nature, it has grown but very little and remains the same slow growing tumors we've been fighting. We are simply stumped at this point as to the nature of the rising CEA level. Then...without any changes or warning...BOOM...the past 2 CEA TESTS have resulted in both showing a decreased CEA level. Again we have no explanation nor rationale for why this has occurred but all I know is down is better than up so we'll take it. Unfortunately all of this testing is quite costly and amounts to just additional bills being added to those we are already unable to pay. Not sure what to do about it but it is what it is and the tests were necessary.
Truth be told I've also been suffering from both Panic Attacks as well a chronic and constant numbness if my left calf that has been unendingly bothersome. I have undergone an MRI, X-ray and Bone Scan on the leg with no findings to date. As for the panic attacks I have begun seeing a psychiatrist whose added yet another medication to pay for....I mean to try to help. Hopefully the meds will help to alleviate the panic attacks as they can be quite scary as they include a difficulty breathing which when this occurs in a person, such as myself, who ALREADY suffers from bouts of shortness of breath (from the loss of so much lung tissue and lung functioning) gets really scary and anxious.
Otherwise it's battle on for me. Probably another couple of infusions and then back to my "normal" schedule of CT Scans to check on the status of my lung tumors.
As for Tara...she too went through a period last month of about 3-4 hospitalizations over a period of 1-2 months. It started with a kidney infection that antibiotics just never seemed to take care of fully and ended up with her back in the hospital. Each time, aside from the kidney infection she would become dehydrated from the vomiting and diarrhea and this would lead to adrenal crisis. She seemed stuck in a vicious cycle of numerous hospitalizations. Thankfully that seems to have finally broken and she has remained hospital free for the past month plus and gaining back her energy. She is scheduled to see her endocrinologist, surgeon (post brain surgery follow up), bone density scan, cardiologist, primary care Doc, and a "slew" of labs to make sure that the hospitalizations, infections, treatments are all "out of her system" and she is on the correct dosages of all of her medications. It is imperative that her meds are all taken in the correct amounts and at the correct times. If even one med is off it can set her whole body off and lead to larger issues. It's a bit of a juggling game but absolutely necessary with a lot of communication amongst the different teams of docs involved.
Otherwise things at home are going great. Abby has moved back in with us for a while along with her boyfriend Matt who is a great young man and a welcome addition to the household/family. This allows them to save a bit of money and the rent they are paying us helps us out a bit in coming closer to be able to meet our rent. Along with the two of them comes Fozzie Bear (Matt's dog) who has already caught the love of every member of the family except perhaps Meeka our Cat who is still trying to show Fozzie that it is her, Meeka, and not Fozzie (despite the obvious size difference) who ultimately is in charge of us humans and runs the house. We shall see how it works out.
Work for both Abby and Matt is going great and Abby just accepted a promotion earning her a bit more responsibility and the salary bump that comes along with it. We couldn't be more proud!!
And Ally is home from college for the summer after her first year ended up with incredible success and a staggering GPA. We couldn't be more proud of her either. She is seeing a lot of her HS friends, going to the gym, and just keeping herself busy in general. Despite Tara and I BRIEFLY enjoying the empty nest syndrome, it appears that has suddenly come to an end and the house is fuller than ever. I would be lying not to admit that there IS something nice about having them all back with us. Particularly while we've learned that we can handle the empty nest, the NEXT time it comes around, and even find some enjoyment in it despite enjoying this reprieve we are currently enjoying.
Well is suppose that's about all for this update. As usual, thank you so much for the messages, thoughts, prayers, and the DONATIONS!!!! We just couldn't survive without your generous donations. Between the rent increase, hospital bills, medication payments, increases by the insurance company, outrageous copayment, food, shelter, clothing, car costs, parking, etc. all of those payment that you all struggle with as well, our income just comes nowhere near enough to cover our bills. Any attempt at a budget just becomes outdated as soon as devised. We start in the red right off the bat and despite help from our amazing family, and despite starting off in the red...inevitably within weeks and unexpected payment pops up. The car breaks down, toll bills from all of the trips in to Boston hospitals are received, a forgotten about excise tax bill comes in....some type of unbudgeted bill comes through that takes an already failed budget and just causes us to scrap the entire budget and start again.....only to have the same issue a month later after "redoing" the budget. Talk about Murphy's Law. My point however is that as impossible/difficult as it is....without your assistance I can't even imagine how bad it would be and have no idea what we would do. So....THANK YOU THANK YOU THANK YOU from the bottom of our hearts. Stay tuned in here for the next update just as soon as there's something of interest/importance to share. Hugs kisses and love to all. Stay Healthy!
March 1, 2017
First and foremost, thank you so much to those of you who have sent me notes asking after us and stating that you've been checking my site and there's been no new updates. It's been since October with no update. Your concern and support is a blessing and very much appreciated. So much has happened to Tara and I since then that I hardly know where to begin.
Let's see....I decided that I had had enough of the chemo and needed a break to let us ALL recuperate some energy. Physically and emotionally it was just time. So I decided there was no better time to take such a break than around the holidays. So, from mid November until the start of January I was chemo free. At that point I was on my 40th infusion (every 2 weeks) and needed time off. The time off was DELIGHTFUL. After a week or so I began to feel better and by the time I restarted in January I was feeling strong, energetic, recharged, and ready to get back at it. I WILL be on chemo for the rest of my life. This is a fact! So, it is also a fact that I WILL need to take such breaks (if I am to hold on to my tenuous sanity) from time to time. In addition to feeling better it also coincided with our youngest daughter Ally being home for school break. This allowed all four of us to spend some quality time together and make some cherished memories. I'm sure that you are all aware of the financial state we are in with neither Tara nor I able to work. We were also VERY blessed and thankful for the many gifts we received over the holidays. It allowed us to be able to at least afford a few gifts for each other to make the holidays even more special. We even had one good friend work with the "Greek Community" at WPI who went above and beyond in sending gifts and gift cards for us to exchange. The thought truly brought tears to our eyes. Having to face the holidays unable to buy even small gifts for our girls and each other would have been absolutely devastating. So thank you again to those of you who helped out during that period. December was a good month.
Then it was back to reality and having to pay the piper for allowing us that experience. The benefits of these short breaks from chemo are awesome, but unfortunately it gives the Cancer a period of free reign. And in fact, the tumors did grow. Luckily though, they grew slowly and was not, at the time seen as much of a setback. That being said, the pattern had been to undergo about 4-6 infusions followed by CT scans of the chest, abdomen and pelvis and repeat continuously. Unfortunately, as is likely the case with many of you (quite common), I have difficulty tolerating that horrible contrast "drink" one has to take prior to CT's of certain parts of the body. So, the past couple of scans have been taken of only the chest and not the abdomen and pelvis, thus sparing me the need to drink that vile stuff.
However, despite the lung tumors growing slowly during this period, my CEA results jumped significantly. You may recall from previous entries that CEA is a blood test that tests for a specific colon cancer related antigen in the body. The number alone is fairly insignificant. What's looked for is large jumps, trends, and clinical corroboration of an issue. In my case we've had both large jumps and a significant trend upward over the past couple of months. This isn't a good thing. And so...despite being back on the chemo since January, I am due to go back in for CT scans of all 3 areas despite my issues with "the cocktail". I'll just have to "suck it up" and deal with the devil liquid. Something has to be causing such changes in my CEA tests and it's been a while since looking to these other areas. So...more to follow.
So THATS my update and now onto an even more important development since I last updated you...in January, Tara must have caught some type of bug and ended up unable to keep her life sustaining medications down. This has happened all too many times before (you may recall about 2 years ago it ended up with her being in a 2-3 week coma.). Thankfully, we caught this "episode" early enough and got her into the hospital before the adrenal insufficiency could become a larger problem. It was during this period while in the hospital that they discovered that a small, previously known about but dismissed as benign and common, Pituitary Tumor had grown. It was still quite small and apparently approximately 10-15% of the general population walk around with such "pituitary growths", but given the fact that it had grown AND given her history, it was HIGHLY recommended that the tumor come out....and so..skipping forward a bit, on Valentine's Day (February 14 for you non romantic types) Tara was at BWH in Boston having brain surgery to remove this tumor. We learned a couple of interesting things from this surgery. First of all, despite being relatively small, this was a VERY aggressive tumor. Not only had it attached itself to the pituitary gland, but it had "eaten" its way through the skin and BONE that surrounds the gland itself. Secondly, according to the pathology report, it was an ACTH producing tumor. I will spare you all of the medical Mumbo Jumbo, but what this means is that this tumor was very likely THE TUMOR. By "the tumor" I mean the "original" tumor that started all of the chain of events regarding Tara's medical issues leading to where she is today. It was a tumor that lead to her Cushing's Disease, which lead to having her adrenal glands removed, which lead to the "sporadic" heart events that lead to her coma and which also lead to her needing life sustaining medications and hospitalizations over the past 18 years. It is NOW believed that this was THAT tumor. Unfortunately, medically speaking it is too late for it to have any positive effect on Tara's situation. She still has no adrenal glands and they cannot be put back in. However...given what the tumor was doing (despite being benign) it DID have to come out AND in some small way it closes the circle and provides some sense of closure to the whole Cushing's Syndrome mystery of where is the tumor that caused all of this. Over the past 18 years Tara has undergone complete body scans occasionally trying to find this little bugger. There was always the chance that it could be cancerous or lead to some other issue. But now we know. File under: interesting.
Speaking of these periodic "episodes" of Tara catching a bug or for some reason unable to keep her medications down leading to an inpatient hospitalization (where she is typically treated with fluids to rehydrate her and "stress level" doses of her regular life sustaining medications) where they can help her recover, provide treatment, and monitor her to be sure that things don't start sliding further downhill....I am currently typing this update at the Beth Israel-Deaconess Hospital in Plymouth sitting bedside next to Tara where she is right now recovering from such an "episode". We brought her in through the ER on Monday pretty sick from a bout of something that lead to vomiting, diarrhea, and dehydration. She's been here since and will likely be her 'til friday(ish)?
So that's TARA's update.
As usual and thankfully MOST important, Abby and Ally continue to find a way (I don't know how) to thrive. Abby continues to LOVE her job and is taking an internal test today that will likely lead to a promotion in the very near future. And Ally is still at The Honor's College at UMass where she finished her first semester with a 3.965 GPA (all A's). She is loving the experience of college and thriving.
That's about it (enough isn't it?) for the current update other than again to thank everyone of you who have sent thoughts, prayers, money, questions, etc..our way. As you know, our financial situation can best be described as tenuous and Day to day. Thank you to the family members and friends who have helped out here. We have been facing the realization that we can no longer meet our rent on a long (or short) term basis and finding a new/cheaper place to live has been lingering over our heads ever since our rent went up and our disability payment went down (once Ally turned 18). Unfortunately, literally every time I would begin to focus on trying to find affordable housing, we have been met with a "health crisis"/ hospitalization that put everything on hold. In addition, medication coverage has changed this year, making our medication costs simply unbearable and has lead to us having to pick and choose which meds to fill and which to simply do without. Some however, are just plain necessary and we've had to find ways to pay for these. It's a shame that we are in a position of having to refuse certain medications simply due to their cost examples of such "refused meds" include some of my anti nausea meds which help greatly following a chemotherapy infusion, or medication meant to help with Tara's expected headaches as she heals from her brain surgery. It seems like the more "serious" the medical issue, the more expensive the meds and the less insurance is willing to pay. Oh well...just another frustrating hurdle I suppose. And finally, with the hospitalizations (which typically last for approximately a week give or take a couple of days) come "hidden" and unbudgeted expenses such as gas in and out of Boston every day, parking of $25/ DAY!, an occasional meal for me if at the hospital with Tara, MD apt. co-pays (prior to this brain surgery Tara had to be seen and cleared by her primary care doc, endocrinologist, cardiologist, neurosurgery, plus lab work, and "pre-op visits), etc. these costs are unavoidable and unpredictable but have become all to frequent recently. Thankfully we both have amazing Parents and families who in addition to dealing with their own issues, have been there for us throughout these "emergencies" and have been a GREAT source of support for us all around. The money is the main stressor don't misunderstand...BUT we are just as grateful for the moral, emotional support of friends and families who offer prayers and well wishes. It is MUCH easier to get through a difficult day when you see a text or email or post from a good friend just communicating to check on you and provide encouragement. I have had MANY days where I was so nauseas and sick from the chemo that I could barely pick my head up off the pillow, and wondering if I have the strength to continue on with the treatments. And so often, as if having a sixth sense, I would get a message from anyone of you offering love, support, or a prayer, and encouraging me to keep fighting. It's those interactions that help me continue to fight on. Knowing there are so many out there who love and support you makes it impossible to simply give up. I've got too many of you (not to mention Tara and my girls) fighting along with me that I just can't let everyone down. And so I THANK YOU ALL for being there for/with us as we continue to battle on.
And thus ends this update. I will try not to let another 5 months go by before the next update. First of all thanks to the brain/memory deficiencies (a chemo side effect) it's hard to remember all that's taken place, secondly it must make this long ass update virtually unreadable, and finally I know (from the messages) that many of you check here regularly in the off chance that I've uploaded an update and are truly interested in what's been going on. I will try harder to make SHORTER, more regular updates. Thank you and God Bless you!!Tuesday October 25, 2016
Let me begin this update with a sincere THANK YOU to all of you who have sent recent notes, texts, emails, Facebook posts and donations. Unfortunately, the donations at present are particularly welcomed AND VERY MUCH appreciated.
After finally, over the course of 5 years, learning to adjust our lifestyle and expectations given the hugs decrease in revenue compared to my working days, Social Security has seen fit, in line with their policy, to cut out benefits by over $1,000/month given that Ally (our youngest) turned 18 in August. That money was earmarked for Ally's well being, including food, shelter, clothes, etc. specifically we relied on that money to help us pay our rent every month. This change in status/income plus Ally's college expenses is causing us to reassess our living conditions and the high likelihood of our having to find some sort of cheaper, subsidized housing option. At present we have been reliant on the AMAZING and LOVING generosity of family. Particularly my parents. While EXTREMELY grateful, we realize that this is NOT a long term solution. And so...please know that any recent donation is/has been used to help pay our monthly rent.
Now on to a medical update...as luck would have it...Mass General Hospital has teamed with Newton Wellesley Hospital to open a new Cancer Center located at NWH but a satellite of MGH. UNFORTUNATELY, MY Oncologist has been chosen as the chief of Oncology in this new partnership. Given his responsibilities he is moving his services to NWH, leaving his pt's with the decision to follow him or to remain at MGH and be assigned a new Doctor. As you may imagine, this is NOT a decision to be made lightly. MGH is one of the best hospitals in the COUNTRY. Given all of its services, leaving my chemo nurse, NP, phlebotomist, and clinic in general is not a process I would freely choose to undertake. However, upon diagnosis I was given 2 1/2 years to live...given the care and guidance of MAINLY my Oncologist, it has now been 5 1/2 years with HOPEFULLY plenty more to come. I have faith and trust in him and see him as the MAIN "cog" in my treatment. Given this, and after much thought and many questions, starting next Monday I will be moving my "primary" treatment to NWH while still able to receive the benefits of MGH as part of their partnership, IF needed. If things don't work out well, I retain the ability to switch back to MGH. I will keep you posted as any updates occur.
As for treatment, as expected, 5 1/2 years (on and off) of chemotherapy creates its own problems as the cumulative effects of all of the "poisonous" chemo builds up in the body. I am starting to feel side effects that I have never had. Specifically, the last couple of infusions have led to HORRIBLE mouth sores that are extremely painful and make it extremely difficult to eat. Despite the fact of being mildly overweight, losing weight while on chemo is not recommended. Between the sores and the vomiting/diarrhea, I have lost about 22 pounds over the past few months. While part of me is happy about finally getting down to an average weight, I'd rather not do it this way. In addition, either the long term chemo, the Diabetes (type 2 diagnosed about 6 months ago because, let's face it I didn't have enough to worry about so someone "up there" decided...lets make him poke himself in the stomach with a needle full of insulin every day...HA!), or some yet to be determined cause, I have been experience complete numbness in my left shin. Who knows the cause at this point, but apparently it IS important to find out. So...that's the current challenge. Again...will update you as soon as I know. Otherwise the treatment plan remains the same...chemo, every two weeks for the rest of my life. At some point it is likely that with such long term exposure to the chemo, my Cancer will become resistant to it. At such a point it will mean either changing chemo (and hoping the new chemo has a similar effect), or a clinical trial (if one exists at such time). But I am getting ahead of myself for no good reason. At present, aside from the side effects, there are absolutely NO signs of resistance. Thank God for little things.
Ok, enough of the negative...on a positive note...Tara, my wife, has been feeling well lately with no new emergencies/issues. We saw her Cardiologist last week (given the MAJOR heart problems she suffered about 1 1/2 years ago leading to her being in a coma for 2 weeks with her heart not strong enough to pump her blood throughout her body), and while it is impossible (according to the doc) to rule out such an event occurring again in her future, at present all looks ok. Her EKG showed her heart to have bounced back and is working at close to full capacity. He doesn't need to see her for 6 months at which pt. they will do an echocardiogram to take a closer look. But he is delighted with her progress.
In addition, Ally's foray off to the Honor's College at UMass has been initially successful. She is happy, healthy, and doing great. We got her back home Columbus Day weekend and she seemed to be doing great. We are so happy for her and VERY proud (despite missing her like crazy). And, we remain equally proud of our eldest, Abby. She has a fairly new job which she loves and is thriving at (already got one promotion). In addition, she is taking two on line college classes in an effort to make her way back to her degree. She remains an incredible help to us at home and continues to amaze us with her maturity, hard work, and immense helpfulness.
I guess that's about it for a current update. I will look to update things again as soon as I have anything further to update you about. Again, THANK YOU ALL for your kind words, motivation, prayers, and donations. It's been a long struggle that I hope and pray will continue on for a lot longer but we couldn't have/can't do it without you all. So again, THANK YOU AND GOD BLESS YOU ALL!!!
June 10, 2016
It's been a busy couple of months filled, as usual with good and bad, ups and downs. I guess the appropriate place to start is with my most recent CT Scan results. Unfortunately, given the 2 month break from chemo (this represents only 3 missed infusions), we were hopeful that perhaps the amount of chemo in my system (cumulative effects from all of the infusions leading up to the break) would be enough to keep any tumor growth at bay....not to be. CT results indicated definite growth during the break. There appears to be approximately 6 or so tumors. Some grew very minimally and others almost doubled in size. Basically this confirms what was already suspected but not discussed previously with oncology...it looks like chemo is simply going to have to be a regular part of the rest of my life. I will need to take SMALL occasional breaks from time to time as I know from experience that there comes points where the cumulative effect reaches a point where I just need to take a break and gain back some strength both physically and mentally. But the breaks will be short so as not to give the tumors much time to grow.
As for my more recent diagnosis of type 2 Diabetes I am still trying to get it under control. Some days my numbers look ok and then some days, despite the daily insulin injections, my glucose level could pop up into the 400's (100 is the goal).
Finally, on the medical front, likely side effects from the chemo, I am awaiting appointments with endocrinology (Diabetes), rheumatology (aching in the joints), and finally dermatology (have been dealing with a horrible rash all across my back, chest, and arms). Needless to say its been a bit of a tough road medically BUT...still hanging in and following the treatment plan that has kept me going this long.
Thankfully, Tara has fared much better medically speaking since my last update. She has remained stable, continues to gain her strength back and has had no major setbacks. She's had follow up appointments with primary care and cardiology and seems to be doing much better.
On a happy note, our youngest daughter Ally graduated from HS last weekend and we couldn't be more proud. Truth be told, upon my diagnosis I was told I had about 2 1/2 yrs to live. Given that prognosis I doubted being around to see EITHER of my girls graduate and now I've seen them both receive their diplomas. Ally has decided to attend the UMass Honors College next year and we'll be heading to Amherst next week for her orientation. I couldn't be prouder. And with Abby (our oldest) heading back to school to become a surgical tech, I am now hopeful about being around to see both girls graduate college. Ally's graduation was also a great opportunity to visit with my parents and mother in law who joined us to share in this special day.
As always...the worst part of this entire medical experience...money. We were just notified that, as Ally is turning 18 this summer, the money we receive on her behalf from Social Security will be ending. This is a big deal for us as it will likely force us to have to look into moving, as without these funds I do not believe we will still be able to afford rent and utilities where we are now even with all of the help of family and friends.
Looks like a long, interesting summer!!!!
I realize this entry is much shorter than my usual novella part of that is due to just having had my most recent infusion Tuesday-Thursday and so my mind/body are still not quite right and finding the right words is proving difficult, and part of the reason is my desire to respond to the MANY inquiries of family and friends regarding my last CT Scan results. I will update again in the not too distant future following all of the above mentioned appointments and their outcomes.
As usual....thank you all so much for all of the thoughts and prayers as we continue to battle on. Friday May 13, 2016
Friday the 13th...seems like an appropriate day for a website update. I apologize to all who have been so patient in reminding me that it's been quite some time since my previous update. It's been such a hectic few months I just haven't been able to find the right motivation/state of mind to actually relive the period enough to actually update the website. But here goes...
As if God felt that perhaps we were strong enough as a family to meet the health challenges we've been dealing with all these years, apparently he felt like perhaps Cushings Disease (Tara), and Stage 4 Cancer (me) just wasn't enough. Every two weeks, on my chemo infusion days, I have bloodwork drawn to make sure that all is stable to proceed with that day's chemo. Lo and behold the results had been trending upward in regard to my glucose levels. Finally, two consecutive LARGE increases (I am told that a value in the low 100's is the goal range for me) up well into the 500's confirmed a diagnosis of type 2 Diabetes for which I would now be placed on insulin (daily, self injections). It took about 5 FULL weeks of daily increases of insulin until I was finally at the point of getting the level down to the acceptable range, but I did. So..just yet another issue to contend with and yet another doctor/specialist (endocrinologist) to add to the "dream team". Anyways, that was the start....
And then came April. The month started off beautifully. Thanks to both of my brothers and my parents, who all pitched in financially, the month started with my brother Neil and myself heading down to Florida to visit our parents. This has been an annual trip which I eagerly look forward to. First of all it's a trip to Florida and who wouldn't love that. But it's also a chance to visit with them all and enjoy ourselves, and finally...it gives me a much needed temporary break from chemo. Knowing that I will be on chemo, every two weeks, for the rest of my life can become a bit overwhelming at times (physically and mentally), and this trip affords me one of usually two "breaks" I take each year to try to recuperate a bit in mind, body, and spirit. Typically the tumors in my lungs use these breaks as opportunities to continue their growth, however the rate of growth over a relatively short amount of break time makes it worthwhile to me. I am due for my periodical CT scans in a week and a half to check on the tumors and to see how much growth may have taken place during this particular period and to assure that the current chemo regimen is still appropriate in terms of treatment. Will update you all once the results come back.
Anyways, back to Florida...the original plan was for Neil and I to spend a week with my folks together, and then for Neil to return home and me to stay on for a second week to enjoy a bit more hospitality/sunshine. At the very end of the first week I received a call from Tara that she wasn't feeling so well but felt like perhaps she was just a bit dehydrated and was pushing fluids and taking her "stress dose" amount of her hormones in hope of catching this early and getting on top of the situation. In talking it over with EVERYONE, I Made the decision that she was being looked after and in good hands. Between our daughters (Abby and Ally) and Tara's family there were plenty of eyes on her and I was assured to be notified with ANY relevant changes/concerns.
The following day I received a call from Tara's sister, Tammy that Tara was feeling worse and they were at the local ER and the doctors were going to admit her for "adrenal insufficiency and dehydration". This is the "usual" diagnosis that occurs when basically her body gets stressed out (either by some physical issue or sometimes simply mental stress builds up that without adrenal glands her body just can't handle). Again I was assured that this seemed like a couple of days inpatient to push higher doses of her hormones and plenty of IV fluids. A course of treatment that we've been through dozens of times. And again, the decision was made to keep me updated REGULARLY as to her progress and for me to stay put.
Finally, after a couple of days I got THE call. Tara had another cardiac event (you may recall a similar event a year ago January where a similar such event led to a decrease in heart function to 14% and a two week Coma). At this point her heart was down to 25% but all agreed on two things. First off they were making arrangements for Tara to be transferred to Boston's Brigham and Women's Hospital where the majority of her treatment has occurred and who is better equity to treat her than the local hospital where she was. Secondly, it was time for me to get home. Thankfully, Jet Blue Airlines were amazing. I was on a flight home within 3 hours and NO extra cost. In an effort to keep this document as an update rather than a novel I will skip ahead and "report" that thankfully her treatments were working and her heart did NOT worsen, in fact it has already shown good signs and the tests show her rebounding nicely. The IV hormones did their job and after about a week or so she was ready to be discharged. She's been back home with us now for about 3 weeks and back to herself. The visiting nurses still come to the house to check in and make sure that all is still on track and so far it has been.
A scary time for sure but in some sense it was good to know/see that God forbid, if I'm not around, I can rest easily knowing that Tara is in good hands. Both of our girls (yet particularly our little mother hen, Abby, handled the situation calmly and perfectly and Tara's sister Tammy, was right there helping out the whole time) simply jumped in and helped to assure that Tara remained in good hands and was safe the. Entire time without me. Thank God.
Ok moving off of health issues now...as with everyone life has its ups and downs. As for downs...the financial cost of a hospitalization adds up quickly. Forget about everything else, simply to park at the Brigham is $20-30/day. In our case on any given day there were likely to be two such payments as "shifts" to be with Tara would usually occur with one person with her during the daytime and another to relieve them in the evenings. If you due the math you can see how quickly that adds up. And as if that weren't enough, last week, and feeling a bit better, Tara left the house to head to the market for some groceries. Having not even made it to the end of our street she turned around and called me out to witness the smoke pouring out of the exhaust pipe. Ultimately the head gasket is blown, along with a few other "minor issues" which is costing us $1,000-1,200 to repair, leaving us with no car to get me to treatments and a bill way to large for us to pay. Once again, we are blessed with an amazing family and group of friends. We have been able to borrow a car from family members in treatment days to assure my getting there and once again, mom and dad are there and helping with the bill for repairs. I was told that likely I could pick up our fixed car tomorrow. We'll see.
And now the positives...our youngest, Ally has 5 more days left as a high school senior. She has decided to attend The Honors College at UMass next year. We are so proud of her. She has worked hard throughout these past 12 years and her efforts show. We took a trip out there last month (just her and I) and took a tour of the campus (a friend of the girls is currently at UMass and was kind enough to show us around), it's a beautiful campus and seemed to resonate with Ally as a good fit.
As for Abby..she remains amazing in her efforts to help out around the house but even more so with helping to assure that Tara follows her doctor's orders to a T!! She is amazingly caring and helpful and has been a God Send during Tara's recovery and my "restarting" chemo. She's even gone so far as to pick up a second part time job as a gymnastics instructor working with infants, toddlers, and young children, to help out.
Well I think that's more than enough to cover this present "update".
I will plan to do so again soon but will likely wait until there's Results to report. Between my scans and check-ins regarding Tara's progress it should be a couple of weeks but if anything changes in the meantime I will update again then.
Finally, as usual, we couldn't do all of this without all of you. The caring, love, and assistance you have provided us truly is the only way we can get up and face all of this "stuff" everyday. It truly seems that when things finally seem to want to overwhelm us (physically, financially, emotionally, spiritually), almost as if by fate, one of you will do, send, or say SOMETHING that helps us parse out the forest through the trees and keeps us in battle shape. We can never repay you all for that help but please know what a difference even a quick word of encouragement means/has meant to our entire family.
THANK YOU ALL SO MUCH!
December 31, 2015
I want to wish you all a VERY happy, healthy, and successful New Year. I would also like to THANK YOU all from the bottom of our hearts for reading this blog and providing us with all of the love and support we have received over the past year. Despite our on going battle with this terrible disease, Colorectal Cancer, we consider ourselves the luckiest family we know due to all of your love and caring. When diagnosed I was given a prognosis of 2 1/2 years to live. In February I will be celebrating my 5th year in this struggle. It hasn't always been easy and it's been literally, a non stop journey including continuous chemotherapy with breaks coming ONLY to undergo radiation treatment, the original Colon resection surgery, 2 separate lung resections to remove over 16 separate lung tumors, and finally a lobectomy (complete removal of an entire lobe of my right lung). Otherwise it's been non stop chemo for 5 years. As most of you know, I still have several tumors in my lungs and to date, there is no cure. I am no longer a candidate for surgery or radiation as I cannot afford to lose any more of the healthy lung tissue sacrificed during either of these treatments. And so, until a cure is found it looks like the chemo is my last and only option to extend my days until that cure is found. STILL...despite this I remain hopeful and thankful. There are SO many out there worse off than I am. I have an AMAZING family and INCREDIBLE friends who are there whenever I get a little down, to pick me right back up. What could be better than that? Who could be luckier than me?
I would however, like to do something a little different with this update/entry than usual. Usually I use my little corner of the Internet to update you all on my progress, setbacks, etc. it was originally meant to be a place where I could provide updates and information to anyone interested, all at once. At first, we had so many people calling, emailing, texting, etc.. On a regular basis but particularly after each treatment, to check in, see how things went, offer support, etc. it became VERY tedious to repeat the "story" over and over again. So...with brother Neil's help we decided upon using this blog as a way to update you all at once. And it's been very helpful.
I also discovered the process had become somewhat cathartic for me to be able to "get it all out". It's helped me cope with difficult times and situations on numerous occasions.
That all being said..I would like to do something a little different with this entry. I've been thinking about this for some time now and decided that this New Years Holiday, where people tend to at least consider if not actually take action via a New Year's Resolution, would be the BEST time for this.
I would like to ask you all for a favor. Many of you have already done us MANY favors and for this we are grateful. But I would like to ask you for just one more, as this one is perhaps more important than any other favors you've done for me...
Colorectal Cancer is a killer...this we know. It takes your health, in some way, your mind, your pride, self esteem, money, time, and eventually..it takes your life. It sucks you dry. It is also considered one of the many "silent" killers" as typically it does not present itself with any symptoms until it is too late and too advanced to treat successfully. In my case, it was discovered on a fateful night while I was working a night shift in a Colorado Hospital ER. That night I felt like I needed to go to the bathroom for a bowel movement. Upon entering the stall I noticed my pants were wet. It turned out they were soaked with blood. Upon completing my "business" I got up, turned around and found the toilet filled with blood. A scary site for sure but having no knowledge of colorectal cancer at the time, I chalked it up to hemorrhoids. I WAS concerned enough however to leave work and head home. Later that day, after another similar episode, I took myself to the local ER to get checked out. Again, I was so unknowledgeable about this disease that I assumed the issue somewhat benign. Enough so that I didn't even have Tara take me. I simply explained what was happening and told her I would go get it checked out and be back in a little bit.
Even at the ER, given my age, general state of good health, and complete lack of other symptoms no one was overly concerned and I took my place in the long line of non urgent patients awaiting check up in the busy ER.
Again...even after being seen by the ER doc, the thinking was likely an internal hemorrhoid that was bleeding. Given the heavy ER traffic of the day, the decision was made that the bleeding would likely stop (as it hadn't been an issue unless I was moving my bowels which they thought likely irritated the hemorrhoid and caused the bleeding). They were confident that the bleeding had stopped and this wasn't urgent. On such a busy day the CT/MRI machines were in overflow mode and the decision was made to let me go home with an appointment to return 2 days later for a CT scan and likely appointment to have the hemorrhoid dealt with following the scan. THANK GOD, someone or something was on my side that day. Bleeding dealt with, for some reason, upon taking my vital signs they noticed my blood pressure was unusually high. I suffer from high BP as it is, and it wasn't much higher that day than it had been many times before. But, again, for some reason, the doctor in the ER didn't feel comfortable sending me home due to the high BP...not the rectal bleeding but BP is what ultimately led to my being kept that day and hospitalized. So...I called Tara and explained the situation focusing on the BP issue and very little on the other issue.
One benefit of being admitted was that, as an in patient I was able to "jump the line" in the CT scan que and they were able to get the scan done late that afternoon.
AND THAT WAS THE BEGINNING...after the CT scan I was visited in my room by many doctors including an oncologist who explained that the CT was not definitive but they were fairly certain that I had advanced Colon Cancer. The very next day was a colonoscopy (which given my age of 43 at the time I had NEVER experienced before. If I had it is HIGHLY likely that this would have been caught early enough to treat and CURE!!!), which verified the diagnosis, and two days later I was in surgery to remove what they could... and the battle was then truly ON!!!
Now....for my favor.... For whatever reason (likely financial considerations of insurance companies which rant I will save for another day) Men, in particular although woman are also susceptible to Colorectal Cancer, are not encouraged to undergo their initial Colonoscopy until age 50. That's simply ridiculous...as bad as thing have been, had I waited until age 50 for my first colonoscopy I would never have even seen age 50 and would certainly be dead already. Admittedly, I do NOT know the actual numbers/percentages, but I CAN tell you definitively based upon the waiting room/infusion department of the Mass General Hospital's Center for GI Cancers, that a large number of people UNDER the age of 50 are being diagnosed with this disease. I am convinced that if people were more aware of this fact, they would be MUCH more likely to request a colonoscopy prior to age 50, and equally convinced that this would lead to earlier diagnosis and ultimately a MUCH better prognosis. Without signs and symptoms of this silent disease, most go on about their days without giving this disease a second thought. The mention of the word Colonoscopy strikes fear in most people, and they are just as happy to push it to the back of their mind and justify it by thinking...I don't have any symptoms and my doc says I don't need to deal with it 'til I'm 50.
Well I'm here (and proof) to tell you that this "head in the sand" philosophy is dangerous and WILL...ABSOLUTELY lead to some of you, or someone you know, ending up in a situation like mine. This is my problem. If people truly knew that, first of all, a Colonoscopy is a 100% pain free procedure, and secondly that all it takes is for you to simply let your doctor know that you would like a referral for a Colonoscopy, DESPITE being younger than 50 (I, personally would recommend an initial one be done at age 40. If ALL looks good than great, you don't have to worry about it again for TEN years) I am convinced that they would take action and get checked out. Most doctors I have come across or heard about are happy to make the referral IF ASKED. Take control of your own well being. DON'T leave your life in the hands of for profit insurance companies. It literally drives me crazy to see so many younger people sitting with me at Mass General knowing that if they (I) were simply better educated about this stuff, many of us would not even be sitting there.
And so....my first step was to make sure that both of my brothers and parents IMMEDIATELY got Colonoscopies.
And THANK GOD...if I remember this correctly, one brother had several CURRENTLY benign polyps removed, and the other brother had a few "pre cancerous" polyps removed. Thankfully, despite being younger than 50, both had potentially serious polyps dealt with and both had them caught in time before they became Cancerous. Were it not for their getting checked when they did it is likely that my family would now be dealing with more than just one of us fighting Cancer.
Step two was "preaching"/hounding my few GOOD, LIFELONG friends to get their colonoscopies done despite being under age 50. Thankfully they too are all presently Cancer free.
I'm not saying that starting at age 40 you undergo annual Colonoscopies...I'm saying go get ONE...if there is a need for more than fine, I'm guessing you will gratefully undergo more...but if all looks clear and clean than at least you'll know, you'll have a "baseline", and THEN you can relax and forget about it until you turn 50.
So here's the rub...the favor...on this New Year's holiday, as you're considering your resolution, I would like any of you over the age of 40 to TRULY consider talking to your doctor and requesting a Colonoscopy. AND EVEN MORE IMPORTANT....I would ask you all to simply share/forward this website address www.bandtogetherforgary.com to at least TEN family members or friends who are at least 40 years old. You don't need to preach (as I seem to be doing...my apologies) or explain...simply send it/share with at least 10 people you love or care about. You just may end up saving their lives. Please...this is the one and only favor I ask. Simply taking 5 minutes during this hopeful time of year to share knowledge/information that could save a life. I believe that's a great way to spend five minutes. I will even take the time to post this on my Facebook page to make sharing easier. Thank you all and again I wish you all a happy healthy New Year and pray that you are all as blessed and lucky as I am.
Sunday December 13, 2015
First and foremost thank you from the bottom of my heart for all of today's birthday wishes. Truth be told, if asked 5 years ago I wouldn't think that I would be here today to celebrate my 48th birthday...but here I am. Unfortunately it's only a few days post my most recent chemo infusion and so I am celebrating the day lying on the couch trying to get past the nausea and exhaustion that comes with each infusion. But...just the fact that I am here makes it that much more bearable and a bit easier to take.
Now as for my regular update...this one will be relatively short. Basically the latest scan results were fairly anticlimactic. The results showed that the metastasized nodules in my lungs are still present but have remained fairly stable in size. They've showed no appreciable growth or shrinkage. So what does that mean?... Well we learned from my "break" over the summer that without chemo the cancer grew (in fact it doubled in size)..now, this first set of scans since restarting chemo resulted in no shrinkage but no growth. And so...the conclusion is that at least for the time being the chemo seems to be having SOME effect. According to my Oncologist, we should simply stay the course. We know the chemo will NOT be curative for me but the idea continues to be to bide as much time as we can with whatever works. Each day the chemo keeps things at bay is another day we've bought.
While I do NOT look forward to spending the rest of my life in chemo, at present we'll take it as better than the alternative. So that's the update. In the meantime it's continue chemo every two weeks and rescan in a few months.
In conclusion I would like to thank you all again for taking the time to read these updates and caring enough to do so. We also appreciate all of your prayers, well wishes, donations, etc. we couldn't do it without you. In particular I would like to say a special thanks to my brother Neil and sister in law, Doreen. Our budget is based on a schedule of months containing four Wednesday's (relevant in regard to receipt of disability benefits), however, we tend to run into troubles those few months that contain 5 Wednesday's when our money tends not to cover the interim necessary. Unfortunately, December contains 5 Wednesday's which looked like it was going to be impossible to afford gifts for the girls for the holidays. As you know from my previous entries, the effect this whole ordeal has on our girls is our greatest source of sorrow and sadness. The thought of celebrating the holidays with nothing for the girls was starting to wear on Tara and I. Thankfully, Neil and Doreen have arranged through the visiting nurses charitable foundation for us to be part of their program and, this year to be the recipients of their gift giving program. I'm still not quite sure exactly how this works but I am told that they will be able to provide some gifts for the girls to have and open during this holiday season. We are extremely grateful for Neil and Doreen and the VNA. Looks like perhaps a happy holiday season after all. I also would be remiss for not pointing out how grateful we all are to be together. You may recall that last Christmas was spent at Brigham and Woman's Hospital with Tara in a coma and her prognosis fairly dire. This year we will spend the holidays together and enjoying each other's company. God Bless you all!
October 7, 2015
Well my restart on chemo turned out short lived. Typically the first 4-6 days following an infusion are the toughest. I can usually expect to spend most of that time in bed asleep. The first 46 hours I am still hooked up to my take home dose via a pump hooked into the port in my chest. Then, when completed, I de-access the pump and crawl back into bed. Also during that time the nausea, vomiting, and diarrhea is also at its worst. It then seems like slowly I start to feel a little bit better every day until finally, after about a week, I start feeling back to myself. This process typically draws out more and more the longer I remain on the chemo without a break. The cumulative effect of the chemo (over time) makes the symptoms worse and the recovery slower. So...going into my infusion three weeks ago, given it being the first infusion after a two month break, I expected the symptoms to be tolerable and RELATIVELY short lived. True to these expectations I spent about 4 days in bed, nauseas, vomiting, and diarrhea. Then thankfully I began to feel somewhat better. Until...about 2 days prior to my second infusion. I began not to feel well. I was extremely cold (to the point where I began shaking and couldn't control it nor could I seem to get warm). Following this came UNCONTROLLABLE diarrhea (sorry about the details and bluntness but self consciousness is one of the first things you lose when diagnosed with Colon Cancer and is important in giving an open, complete, and honest update). When I say uncontrollable this is NOT an exaggeration. I spent two nights LITERALLY unable to sleep as every time I would lie down I would immediately have to get up and RUN to the bathroom. Given this situation, I called my doctor and cancelled my next infusion. First of all I didn't want to undergo another infusion already suffering from these symptoms as it would only make things worse. Secondly, to be honest, I didn't think that I could make the hour drive into the hospital without having to stop a few times and find a bathroom (it was that bad). So, with the doctors in complete agreement we rescheduled the infusion for the following week (yesterday). A few days later, with the symptoms having continued with little to no improvement, and my feeling that I was likely beginning to suffer from dehydration, I drove in to be seen by the doctor and have labs drawn. So I spent last Friday at the hospital. All of the tests came back negative for anything serious but positive to confirm severe dehydration. So I was "pumped up" with IV fluids, given a prescription for phosphorous (my level was very low for some reason), and sent home to continue to recovery. It was determined that I had some sort of NASTY stomach virus causing these symptoms. And so it continued. I spoke to my doctor again this Monday and given that the diarrhea, although better, had not fully abated, we decided to once again postpone my second chemo infusion. It is now scheduled for next Thursday. Thankfully, I can report that I have had NO diarrhea over the past 2 days, and aside from still feeling very week from the whole ordeal, seem to finally be on the road to recovery and should be good to go for next Thursday's infusion. This is how quickly and how intensely I can get sick, particularly when my immune system is compromised from even one infusion of chemotherapy.
So that's been my journey over the past 3 weeks or so.
As for "non-medical" life in general...thankfully the timing of all of this was such that it did allow me to participate once again in the annual "Linda's Run for the Dream". You may recall that this is an annual 5K run/walk started and organized by a high school classmate and 3 time Cancer survivor, Linda Ryan and her "team" at MeStrong. Linda organizes MANY such races in her current home state of Florida, but 3 years ago she expanded to add a race in our hometown of Lexington. The proceeds from these races go to many different organizations, groups, and people for research, as well as grants to help patients in financial need. Three years ago I was lucky enough to benefit from one of these grants which, at the time, was quite helpful. Unfortunately, having just undergone my infusion, I just didnt have the strength to walk this year but thanks to my good friend Jerry Michelson, he provided me with the use of a golf cart to "ride" the route. My youngest daughter Ally and her friend Keara joined me and we had a nice day participating in this event. It was nice to get back to Lexington and see lots of old friends. It's an excellent event with the money going to a great cause.
In addition, this past Sunday (although not back to myself but doing a bit better) I took Ally to an event (admissions officer presentation and panel discussion consisting of 6 alumni) put on by UPenn, held at BC Highschool. UPenn is one of the colleges that Ally has had some interest in. I was hoping/planning to take a couple of weekends this fall and take Ally to visit a few schools in which she's expressed interest. Unfortunately, we simply are unable to afford to take these trips. The cost of gas, food, hotel, etc...just makes it too much for us to be able to afford. So..given this, I was thrilled to hear that at least one of these schools was coming to town. Despite not feeling my best there was no way that I would miss getting her to this event. And I am thrilled that we did. Ally enjoyed the presentation and experience very much and it turned out very helpful for her in starting to narrow down some of her decisions. Now if all of the other schools we were planning to visit would only cooperate and come to Boston as well, I would feel much better (and much less guilty about not being able to take her on visits, Ha.)
Otherwise all is status quo. We are still struggling to make ends meet and appreciate those of you who have donated to our cause and continue to help us meet our bills. Our thank you's alone could NEVER appropriately convey the magnitude of our gratitude but please know that we could never make it without your assistance. Similarly, your prayers, emails, text, etc...keep us going throughout the difficult times such as these past few weeks. Knowing how many friends and family members we have that care enough about us to think of us and pray for us fills our hearts and keeps us battling on.
Thankfully, Tara continues to feel well, and our girls remain healthy and busy with their lives. They amaze us everyday with their resiliency, strength, and refusal to give up. They are bright, hard working, intelligent young women who make us proud every day.
Well, I think that's about it for this update. God willing (never thought I'd say this but...) things remain on this path and I can get back to chemo next week as scheduled. Will look to update you all again soon as treatment moves forward and again, thank you and God bless you all. September 4, 2015
First of all I hope that everyone had a great summer. Despite the calendar and weather, in my mind Ally starting up her senior year of high school earlier this week marks MY official end to summer. Overall, (and believe me there were some tough and challenging times), I am choosing to remember this summer fondly and full of good times. We didn't really go anywhere or do anything (financially speaking those days are unfortunately over), we were able to spend quite a bit of time together as a family and just enjoying being together. As for highlights...wow let's see...first of all I guess would be the celebration of both girls birthdays. Abby turned 19 in July and Ally turned 17 in August. As you all know by now, 4 1/2 years ago I was given 2 1/2 years to live. Given this, ALL milestones (such a birthdays) take on a whole new meaning for me as there was a time (still is, truth be told) where I didn't/don't know how many more such milestones I'll have to celebrate. So things like birthdays, Ally starting her senior year, anniversaries, etc.. Become far more special to me. Speaking of special anniversaries...a little over a week ago (August 27) Tara and I were blessed enough to celebrate our 20th wedding anniversary. I won't lie, it's been one hell of a roller coaster ride but we made it and I couldn't be happier to have had the privilege of being married to such an extraordinary woman for 20 years. Each year I love and cherish her more and more. Her love, friendship, support, patience, guidance, etc.. Have all played a KEY roll in my refusal to give up the battle, and without her I'm not sure that I would still be here!
Let's see...what else...as you may know from previous updates, Ally was lucky enough to travel to Europe (thank you SO MUCH to all of you who pitched in financially to help ensure that she was able to go) through a school program at the start of the summer. I was lucky enough myself when younger to do some traveling of my own (I spent my junior year of college abroad in Israel and taught English in Japan for almost 2 years after graduating college), and it was awesome for me to watch Ally catch the "travel bug". She had a great time and we all feel like we traveled there ourselves vicariously through her pictures and stories. She went to England, Ireland, Wales, and Paris and thoroughly enjoyed the experience.
We also had a chance to enjoy 3 nice weeks with my parents who made their annual trip up north from Florida. It's always nice to be able to see them and spend a little time together. Their presence has the added benefit of bringing my brothers and us together for dinners and a nice BBQ up at my brother Larry's house in NH.
On the other side of the family, we had the opportunity to get together to celebrate the graduations of my niece Jessica and nephew Jameson. It was great to see them both reach their milestones as well as having the chance to see and spend a little time with Tara's family. So again, while not an overly taxing, adventurous summer but full of great family time. The key for me was being on my "chemo break" and feeling strong enough to attend these "outings". It was very nice.
Again, that's not to say we weren't met with some challenges over the summer either. By FAR, the worst of these was Tara experiencing another adrenal crisis. Thankfully, unlike the episode last December and January, she did NOT end up in a coma as she did then. BUT, it was bad enough to lead to a 2 week hospitalization. As you know, these things happen when you live your life without adrenal glands. It can happen any time for a number of different reasons and cannot be predicted or scheduled for convenience sake (if only it could....). There have been stretches lasting YEARS during which she remains stable and requires little, if any, medical intervention, and then there could be a year involving numerous hospitalizations/care and treatment. Unfortunately, this has been a particularly bad year for her. Thankfully she is feeling much better at present and we are working closely with her Endocrinologist to taper her medications back to find a med regimen that will remain stable and consistent and allow her to get back fully to where she needs to be for now. Unfortunately, every body is different, every life is different, and our lives and "biochemical" needs are in a constant state of flux and change. Tara's body is simply unable to provide its own "changes" to keep up. She is dependent upon the amount and timing dictated completely upon when and how much medication she takes in. Too little and she goes into crisis...too much and...yep, she goes into crisis. It's not at all an exaggeration to think of it as a continuous, never ending, life or death balancing act. And thankfully...for today, September 4, 2015, she is stable and doing well. Stay tuned...
Ok, my turn...as you may recall...in June we got to a point where I was on chemotherapy and doing "ok" ( at least "Cancer wise"). We knew from periodic scans that the numerous tumors in my lungs were still there and the chemo was NOT proving to be curative BUT it was keeping the tumor growth stable. The scans were not showing a decrease in tumor size but at least the growth had slowed down and they remained relatively small and slow growing. It was this knowledge that made us (myself and the oncology team) comfortable with the idea of taking a break. At the time, I was completely spent. I (as well as Tara and the girls) reached a point where physically, psychologically, and emotionally I had had enough. Both the immediate effect of each treatment as well as the cumulative effects of so many treatments, just got to be too much. And so, the break began. We knew at the time was that it was highly likely that after a break I would need to restart chemo again as it was (and still is) my only/last remaining treatment option at present. I am no longer a candidate for surgery or any type of radiation (global or targeted). Given the amount of healthy lung tissue remaining I can no longer afford to lose anymore. Chemo is the only currently accepted treatment option that does NOT result in a simultaneous loss of healthy tissue. So the plan was to take a one month break...run bloodwork to see how things looked...take a second month...run CT scans to check on the tumors...react appropriately (depending upon all test results either take another month OR restart chemo).
So after a month's break I went in and had lab'a drawn. Now, in general there is no blood test to test for the presence, or amount of colon cancer in one's body. For the most part the blood tests were more looking to make sure that either the long term, cumulative effects of the chemo, OR any current changes to anything which could be affected by the Cancer, OR any changes/problems due to my body "readjusting" to life without the chemo weren't leading to any problems.
That being said, there is ONE test referred to as a CEA level (I will spare you, trust me, the "medical" lingo describing but...) in MOST people without Colon Cancer is 0. It typically doesn't show up in the blood, or if it does it will be a very low value or 1 or two. It actually tests for the presence/amount of a colon cancer "antigen" ( if you recall any HS biology an antigen is a chemical made by the body to fight off something that shouldn't be there...so in a non colon cancer person, where there is no cancer to battle, there is no need for the body to produce this antigen). In my case my CEA level goes up an down over time depending upon a lot of different factors. It is NOT considered to be completely accurate in diagnosing the amount of cancer in ones body or the size of tumors, etc. we are warned early on in treatment that this test result must be looked at in conjunction with A LOT of other pieces of information. However...my CEA level, while constantly shifting has always gone up during periods without treatment and either remained fairly stable or decreased some while on treatment. They look more for trends over time than the actual number.
So why then is this currently important? And why am I wasting so much of your valuable time explaining all of this? Good question, I'm glad you asked. My CEA value, while up and down, usually changes by anywhere from 1-2 to 5-7 in range, there have been very few large "jumps" either way...and at its highest value it has reached about 34'ish. In the group of labs taken after my first month's break, my CEA value was 59.4. So while again, not definitive, having almost DOUBLED, we had a fairly good understanding that the Cancer was likely more active during the break. Not a great sign. But...nonetheless we continued forward with our treatment plan and I enjoyed August as chemo-free month two. This past Tuesday was the end of that month and therefore according to plan, time for CT scans. Yesterday therefore was my appointment for the results. Having been fairly well prepared thanks to my good old CEA test, it unfortunately came as no surprise that, since my last scans, every one of the lung tumors not only grew but pretty much doubled in size. While certainly not good news by any stretch, at least (despite this growth) they are still "relatively" small. What it means however is the need to end our break and get started back on chemo immediately (in two weeks).
Now...one last complication. As written about previously...prior to starting chemo treatments 4 1/2 years ago, I underwent a procedure to have a "port" implanted in my chest. This port allows for the medical folks to access my veins via a needle which is placed into one end of the port through my chest and gives direct access into the large vein in my neck. Such a port is standard procedure for infusing chemotherapy. They are able to both infuse meds into me this way AND draw blood out through accessing the port the same way.
Even going back to before my break, the previous couple of chemo infusions, as well as using the port to draw labs, has proven problematic. They've been able to infuse meds but have had trouble drawing anything out. This is a problem that needs to be resolved prior to restarting chemo infusions.
At present I am awaiting a call to schedule what they call a dye study, where they access the port and inject dye through it. They then track the dye in an effort to locate just where/what the problem is. If its something easily fixable, they do so. If not it will mean having to undergo a procedure to remove the port and replace it with a new one. I am told that while some ports last much longer, 4 1/2 years is a while to have the same port. If the port needs replacement I will need to delay chemo and undergo that procedure first. Either way the Doc was pretty adamant about needing to restart chemo sooner rather than later so I'm certain this will all happen fairly quickly. As of now I am scheduled to restart chemo on Wednesday (in about 1 1/2 weeks), but while I remain cautiously optimistic, that may be pushed back a bit.
So...finally...that's the update. Unfortunate for sure but again, not a surprise. It is looking like I have one of three options in front if me...1. Resign myself to lifelong chemotherapy interspersed by occasional (annual?) breaks to "recharge" the batteries...2. Give up, stop chemo and take things as they come (NOT an option for me. I'm NOT giving up)...or 3. Find a cure for Cancer (top choice). That's about it for options. Although I always hold out hope that technology/research will continue to advance and some help will come my way. Until then its fight on!!
Otherwise it's life goes on. I'd be lying if I didn't say that there are no negatives to a chemo free summer. As silly as that sounds its a terrible truth of Cancer, The sicker you are the less you do. In every way but one this is a HUGE negative and, make NO mistake, I would HAPPILY trade in my cancer for just about anything! BUT, the better you feel, the more you have the energy/desire to get up and out...the more you get up and out, the more money you spend. It's been a huge financial struggle and it looks like its only going to continue. We are obviously VERY aware of our financial situation (some may say obsessively so) and we took every opportunity to take care regarding spending (packing lunch if out for the day vs. purchasing, spending a hot day at Tammy's (Tara's sister) pool vs. paying for parking at a beach are such examples) but no matter how much you are aware and are careful, the nice weather combined with feeling better, and wanting to get out and about with the family simply leads to some level of spending increase when compared to lying in bed sick all day.
In addition, despite what you may think, it is expensive to have someone in the hospital as we did with Tara. Aside from the medical bills which are obviously crazy, there is the day to day cost of myself and/or the girls driving in and out of Boston daily, parking of $30/day per car, cafeteria costs to have a cup of coffee or bite to eat, etc.. While these may seem like fairly small costs, they add up over a two week period. To a family on a budget with ABSOLUTELY no room to stray, this becomes a huge burden.
Anyways as I reread this section, part of me (a large part) wants to delete it as I understand it comes off as both pleading and complaining about having to spend money for 1. Enjoying our time together and 2. Getting Tara the care/treatment that she needs. But I'm purposely not going to delete it for the simple reason of wanting this blog to be truthful in all respects whether that's good or bad, happy or sad. If I delete something I write because I'm afraid I what people say or think I may as well turn each update into a two sentence update on CT results. While that may be desirable by some of you, it negates the original purpose for my starting this "project". My original goal was to provide you all with a look at what Cancer is, what it does, how it affects...while at the same time having it act as a medium to share factual information/updates regarding my health and treatment for the many family and friends who were gratefully reaching out to me to check in (it allowed me to update many at once rather than having to respond to everyone individually with the same info). And finally, although I didn't realize it until I began, I find it extremely helpful and cathartic to have a place to openly and freely "discuss" all of this "stuff". So, I will leave this financial section as is with my begging you NOT to make these mistakes. Please know the obvious....I would happily spend my very last penny to be able to spend time with Tara and my girls either at home OR in the hospital. I am NOT complaining that I have to spend money to visit Tara. In addition, I am not pleading with ANYONE to "do something about it". It is what it is and these are facts. They are not wishes, dreams, wants, regrets, complaints, etc..this is just a "description", like the rest of this update, of what's been going on for us since the last update.
Ok, I think/hope that explains that. So we've got the updates on "life", medical, and financial. I guess all that remains is emotional/psychological. On that front it's relatively simple...Cancer Sucks! BUT...I have it and can't change that. Until the day I die, I will continue to live ( Pretty profound huh?). I will continue to do whatever I can to fight on. Sure I'm disappointed that the tumors have grown and I need to restart chemo but I've known all along (the Dr. 's have never lied or hidden anything from me) that I have stage 4 cancer which to date, is incurable. I know that any treatment I undergo is targeted at extending my life as long as possible and NOT at curing me. I knew that when my break started in July, it was a temporary thing and that I would need to restart chemo again at some point...I KNEW/KNOW all of this and thankfully have had 4 1/2 years (to date) to come to terms with it all. So, while not happy and while wishing things were better, I'm doing ok. Truly I am. My wishes are for others and not myself, as I know where I stand. What bothers me is what this has done/will do/ and is doing to those closest to me. I wish Tara didn't have to worry about me for even a second. She has enough to worry about with her own medical issues never-mind adding my well being to it. I wish that Tara and my girls didn't have to worry about money and watching every penny. There was a time when money wasn't a problem. I made a very good living and we could afford both our needs AND wants vs. struggling to meet needs and giving up on wants completely. I wish my brothers and parents didn't have to worry about remembering the dates of my doctors appointments so they could call and check in. They ALL have busy lives to lead and should be able to do so without always keeping me in mind and worry about how I'm feeling. THESE are the things that bother me far more than being upset/depressed about having to restart chemo. But such is life.
Ok..I think that finally covers it. That's the update. I want to take this last paragraph (as usual) to thank you all for everything. Thank you for your attention, thoughts, support, donations, prayers, etc. all of these things mean the world to us and we will forever be grateful and thankful.
Being back in treatment I will likely have more frequent updates than during this break period. At present that would include updating you on my port dye study, it's results, and any change that brings about regarding the schedule to restart chemo. Thank you again and God bless you all!
GaryJune 29, 2015
As promised I just wanted to get out this quick update. Overall things are going well. Of course there are the usual concerns that we all face in life, but in comparison I'd say we are at a pretty good point in time. A week and a half ago I went in for my usual chemo infusion. Unfortunately this turned out to be a tough one. Chemo, as if pumping poisons into your body isn't bad enough, has a cumulative effect. The more infusions one has the worse the side effects seem to be and the longer they last. This past one was a tough one. It's been 10 days and I'm FINALLY starting to feel better. The exhaustion, nausea, vomiting, etc.. Just held on and didn't want to let go. It was so bad in fact that it led me to, for the first time, decide that I couldn't take any more. I needed a break. I just simply couldn't face the thought of having to go through another infusion just two days from now. So...I spoke to my Oncology team and we made a decision that a break was needed. You may recall that we tried a similar break last summer and were hoping to get three months free of chemo. Unfortunately, scans taken at the two month mark showed the lung tumors had "spent the break" growing. This caused us to cut the break short and restart chemo after two months. This time we are going to keep an eye on things as we go. I will return to see the doc and have labs drawn to make sure that there are no problems resulting from the past "round" of chemo. Then, the following month I will have scans redone to check on the activity of the Cancer and then likely...restart chemo again.
Unfortunately, for me, chemo is the best, last, and ONLY current treatment option I have remaining. I am no longer a candidate for further surgery, nor am I a candidate for further radiation (even targeted radiation). So, as difficult as it may be...it WILL be back to chemotherapy again and preferably before the tumors start to become more problematic (growing, spreading, etc..). So while it may seem like a risk to take this two month break (and it IS a risk), I've learned that quality of life HAS to be weighed along with quantity and I've just simply reached the point where for the sake of myself AND Tara and the girls, it needs to happen. There needs to be a little time where they can see me up and about and not just moving back and forth between my bed, my chair, and the bathroom. We ALL need to see me regain a little strength and be able to get up and about and enjoy our time together. The hope (prayer) is that two months is a brief enough time that it won't cause any long term problems, but enough time to gain some strength and enjoy a good chunk of our summer. So that's the plan.
It is our hope to be able to get out and spend some fun time with family and friends, and each other before having to get back to the chemo.
As for the rest of the gang...Tara has her good days and other times where she just needs to take a break and have a quiet relaxing day at home. But overall, she is doing great and while not fully recovered from her scare over the winter, she continues to improve daily and is feeling much better. As a happy side note, this August Tara and I will celebrate our 20th wedding anniversary and we are hoping that given my break and her improvement, we will both be feeling well enough and strong enough to celebrate this milestone together in a manner appropriate to its importance. To be honest, there were MANY days where we didn't think that we would ever reach this day together.
Abby and Ally are doing great. Abby is thoroughly enjoying her work as a Nanny (following in her mother's footsteps) and is starting to prepare for getting back to school. Ally finished up the school year with honors and is VERY excited for her upcoming trip to Europe. She leaves in about 10 days (July 7) and is going to England, Ireland, and Paris. I am SOOOOO excited for her to have this opportunity. I am also thankful for the financial contributions made by some of you that have gone directly to assure that Ally will have the necessary funds for her trip. If anyone deserves a break from life and the ability to travel to Europe and just forget everything and enjoy herself...it's Ally. I can't wait for her to come back and tell me all about it. I'm so happy and so jealous.
So that's about it. For now its a few more days to completely put this last infusion behind me, see Ally off, and start to enjoy some family time until restarting chemo again.
Once again, I really want to thank all of you who have donated money, prayers, and well wishes. While I wouldn't have it any other way, assuring that Ally's trip is fully paid for, seeing that she has the recommended amount of spending/food money, purchasing all of the necessary items she'll need, etc..has REALLY taken a toll on our finances and our ability to be sure that all of our bills get paid. It's been a huge struggle and a lot of bill "juggling", but your donations have made it easier and been GREATLY appreciated. So again we THANK YOU ALL for ....EVERYTHING!!!!!
I guess that's about it. I will look to update you all again at some point during my break to hopefully, be able to share some good times with you. I hope you all have as great a summer as I'm hoping to have.
Gary KaneJune 3, 2015
Well as promised, I just wanted to give a brief update regarding my scans two weeks ago. Unfortunately, the scans show the spots on my lungs are continuing to grow. Luckily however, there did not seem to be any new spots seen AND while growing, the spots only grew a couple of centimeters. This is a good thing. If they have to grow at least let it be slowly.
In addition, I've reached a point of needing a little break. It's been non stop chemo for over 6 months now and the cumulative side effects are starting to really get to me. At first I would suffer 4-5 days of feeling Ill following each infusion. That would give me a good week plus of feeling better and stronger before facing the next infusion. Slowly, over time the period of exhaustion, nausea, stomach related symptoms, voice loss, etc...has lengthened to the point where now I am sick for MOST of the period between infusions. I am lucky if I get 2-3 days of feeling "ok" before needing to face the next infusion. It is obviously taxing on me but equally, and unfairly so, on Tara and the girls.
You may recall that last summer when things were looking a little better, we attempted a three month break from chemo. At that time we got two chemo free months before the scans at the time dictated foregoing the last month and restarting the chemo. Given this history AND the fact that even on the chemo (although slowly) the spots are currently growing. BUT....in speaking with the Doc and feeling like I NEED to take a break, he is if the impression that given the slow rate of growth, it would be ok to take a little break now. The mental aspect is one that has to be considered as well as the physical and mentally...well it's just time. So...I will undergo chemo again next week, and then two weeks from then, and then I will take a break of one or two months. Fingers crossed that the tumors keep the pace at which they are currently growing and don't use the opportunity to "sprout" but we'll see. It's just time.
Having made the decision, while a bit anxious, I am thrilled and very much looking forward to gaining back some strength and enjoying some time with Tara and the girls while I'm feeling a bit better.
So that's it, that's the update. In the meantime we keep trying to push forward. Current focus is on Ally finishing up the school year and preparing for her school sponsored trip to London, Ireland, and Paris in a month. Thanks to the tour companies allowance of a "payment plan", we have been making small payments for this trip for over a year now and have finally just made the last payment. I am SO excited that we were able to give Ally this experience. No on deserves it more than she does. Now our goal has switched to trying to find a way to save up enough over the month to make sure she has some spending money while overseas. For some reason the trip includes breakfast and dinner but not lunches. Not sure why this is but as they say, "it is what it is". So...while WELL aware of how much you ALL have done for us, and how much money you have all so incredibly donated to help us meet our bills, medical costs, EVERYTHING else, and how much we appreciate EVERY single cent you have donated...please know that any money donated over the next month will go straight to Ally to assure her a trip of a lifetime. I have always tried to be as honest and up front regarding letting everyone know exactly where their donations go and I want to be up front about this. It is our goal (recommended by the school tour folks) that Ally brings between $500-$1,000 for the ten day trip. Given this, I want you to be aware that until we reach that goal, and money we have will be directed to that goal.
So there you have it. It's been a tough week, as once again the chemo has left me voiceless since LAST Wednesday (not sure that Tara and the girls mind so much), and the side effects are slow to disappear, but somehow it is a bit easier to take knowing that a break is coming. 2 more infusions and then MY little "vacation" can start. I will look to update you all again in a few weeks as I finish up these last couple infusions and confirm that all is still in place for such a break.
Again...THANK YOU THANK YOU THANK YOU. It's been a trying couple of weeks but your support, love, and friendship is truly what gets us through and as usual we are eternally grateful. God Bless!
Gary Kane May 10, 2015
First of all I want to take a moment to wish my mom, my wife, mother-in-law, sisters-in-law, and All of you mothers reading this a VERY happy Mothers Day! Being a mother is perhaps the toughest (yet hopefully most rewarding) "job" in the world and you All have my deepest respect and well wishes on this Mother's Day.
I know I have been terribly remiss in my responsibility to keep this website/blog up to date over the past couple of months and I would like to thank all of you who simply wouldn't let that "fly". I have received NUMEROUS calls, texts, emails, etc...reminding me that I was long overdue for an update and was also reminded just how much people care about Tara, the girls, and I. THANK YOU so much for reaffirming what we already know. Thank you also to those of you who have donated to the bandtogetherforgary fund over this timeframe. I apologize for my negligence in sending out individual "thank you's" and have no real excuse for that negligence. The money you donate is not only appreciated more than you could ever know, but it is also our "lifeline" that allows us to continue to be able to survive this difficult form of Hell we've faced daily since my diagnosis and treatments. There is no acceptable excuse for my failure to appropriately and individually thank you and let you know just how much it means to us and just how special you are to us. I pledge to do a much better job in the future in personally letting you all know just how appreciated you are. And not just for the financial assistance/donations, but even those who show their support in a whole myriad of ways (donations to other charities, phone calls, "checking in" to make sure that we are ok, etc..). The entire spectrum of support is/has been amazing and is greatly appreciated.
Now...Truth be told I'm not sure exactly why there has been such a delay in getting out this update. Thankfully, unlike the previous update there have been NO catastrophic events that have taken place and no horrible news to report...yet for some reason, every time I would sit down to start to write (or even think about it...) the whole process has just seemed so overwhelming. Perhaps it's just a "point in time" where things have gotten to me a bit, or maybe it's thinking back to the emotion involved in writing the previous update informing you all of the crisis we had with Tara, or Hell...maybe I've just gotten lazy recently and not up for writing. I honestly don't know...but for some reason it's been horrible to start to put together this update.
But...here we are, I woke up this morning, finally feeling a bit better following my last infusion, It's Mother's Day, and Tara and the girls are around here somewhere doing "their thing", and I just decided..." Ok, let's do this." So here it is...
As for the actual update...
As has become my routine in posting these updates, I guess I will divide things between "good" news and "not so good" news. As for the latter...physically I guess it's the chemo that would be the greatest difficulty, as the cumulative effects of all of the infusions really seems to be kicking my ass. It used to be that following a Wednesday infusion...I would be exhausted and pretty much sleep away wed-sat. This would follow with a day or two of nausea and vomiting and then, by the following Tuesday or Wednesday I would be back to feeling better and pretty much be able to enjoy all of week two feeling myself and preparing to restart the cycle the following Wednesday. Unfortunately those days are gone. The past couple of infusions have seen many more "sick" days and fewer days of feeling well. It now seems like in every two week cycle I MAY get 3-4 days devoid of negative side effects. As a further "hit", as advertised, one of the side effects of the current drug combo is hair loss. Despite dealing with chemo on and off for about four YEARS now (almost five believe it or not), this is the first combo that has included this particular side effect. Unfortunately, the drugs effect the hair follicles and does not differentiate between the hair on the head and body hair. ALL hair is fair game. The good news is I find myself having to shave a lot less often... The bad news is I look like a swimmer having just shaved my body to decrease drag. I learned a long time ago that vanity is one of the major tests of cancer treatment and have come to terms (or so I thought) with having to forego a certain amount of self esteem...but losing my hair has always been a sensitive topic for me. The hairline has been "receding" for a while now, but waking up and seeing all of the hair on the pillow, or shampooing my hair only to look at my hands and see the clumps of hair...well lets just say its been yet another "test" for the ego to overcome. I suppose that IF the current chemo regimen is working, I can deal with all of these "negative" side effects...if not... Well that's another story. At this point, we will find out soon. The plan is to undergo one more infusion (Wednesday), and then between then and two weeks from then (when the next infusion is due), I will undergo the next set of scans. These scans will let us know whether or not this current chemo regimen is working or not. If the lung lesions shrink or even remain the same when compared to the last scans, we will likely remain on this treatment path and continue on. If however, the lesions show growth or if there are more of them, then it will tell us that the current treatment is not effective and we will talk about what, if any, other options are available and worth trying. So...stay tuned.
Otherwise, other than the usual financial struggles there have been no other major "bad news" since the last update. Financially, I guess the major "hit" has been out landlords deciding that after four years it was necessary for them to raise our rent another $500/month. When I try to look at the situation logically and try to remove the emotions, I suppose I can't blame them. Looking realistically at the current rents being advertised for comparable rental properties in our geographic area, I find this increase to be appropriate and "in-line". The problem is of course, that I can't easily take the emotion out of it, nor can I realistically look at it logically. To me, I end up looking at is as someone who was struggling to pay the rent in the first place, and now having to figure out how to come up with an ADDITIONAL $500/month. As usual however, we'll figure something out and find a way to do it. I've learned long ago that somehow..when faced with a seemingly impossible situation....when backed into a corner, and food, shelter, or some other necessity of life threatens your family..you simply FIND A WAY. And in this situation...we will find a way!
Ok...enough of the bad..now for the "good" news.
Lets see..I guest first of all should be a couple of thank you's. as many of you know (or may recall from previous updates)...over the past 3 years I have made an annual "trek" to Florida (with my brother Neil) to visit our parents and take a little "break". This trip not only allows for ME to take a break from treatment, but has the additional benefits of getting a chance to spend a little time with my brother and parents, and also gives Tara, Abby, and Ally a break from having to deal with me (particularly when I'm not feeling well). It's not easy for them having to look at/deal with me on a day to day basis. This little break has proven to be good for them and they have come to truly look forward to a week of "girls/healthy people" only. We usually go in January or February. This year, despite having our trip all planned and tickets purchased, we had to cancel due to Tara's medical crisis. It looked like the trip was in jeopardy and unlikely to happen. Thankfully...despite Neil unfortunately unable to join me (next year Neil, we're back on again and hopefully Larry can join us this time around)...my parents graciously offered to pay for my ticket and I was able to head down to Florida for a 10 day visit last month. Tara and the girls got their "break" from me, and I got a short break from chemo, AND most importantly, I got the opportunity to visit with my parents. We had a GREAT time. I was able to relax a bit and felt great. While there I was able to meet many of their friends, enjoy many great meals, catch up for breakfast with my Uncle Sam and Aunt Sandy, sit by the pool to get a bit of sun, etc... It was a great trip and I was happy to see my folks feeling well and enjoying themselves.
The next "thank you" is to my brother Larry and sister in law, Ashton. With their help of a loan, Abby was able to purchase a car and THIS, in turn, has allowed her to get a job as a "Nanny/Babysitter". Abby has been wanting/needing to work, but like the "chicken and the egg", she couldn't commit to a job without access to a car to get there, yet she couldn't afford to buy a car without earning money from a job. Unfortunately, Tara and I weren't able to help Abby out with money or a car, and it was a difficult situation for us all. Thankfully (as they have done so many times for us), Larry and Ashton "stepped up" and agreed to lend Abby the money to purchase a car. This allowed her to immediately turn around and find herself her current job. I am proud/happy to report that the job is going well and she has been able to start paying back her loan.
Otherwise, life goes on. The girls are doing terrific...Abby is busy with work and has a nice little social life, and Ally continues to thrive in school and all of her extra curricula activities (golf club, national honor society, A Cappella group, key club, etc...). In addition she just took her SAT's last week, as well as her AP test in history, and will take the English AP test next week. Once again her report card a few weeks ago was all "A's", and she just keeps "slogging" through. Over her spring break, her and I took a couple of day trips and we visited Northeastern University as well as Brown University in RI. She still has NO idea where she wants to go or what she wants to study but we figured we would at least get out to visit a few places and see if anything jumps out at her. We will continue on to visit a few other places as the summer months come our way. While on the topic of colleges I want to take a second to congratulate both our Niece Jessica (Mass. Maritime Academy), and our Nephew Jameson (Quinnipiac) for their recent acceptances to college for next year and their upcoming graduations. Both Jessica and Jameson have worked hard and we couldn't be happier for them as they get ready to start off their college careers!! Now...back to Ally... She is also starting to get excited for her upcoming summer trip to England, Ireland, and Paris. This is a school sponsored trip for 10 days in July. Thankfully, the tour group operating and orchestrating this trip has an option for monthly payments as an option for financing the trip. So...for the past year or so we have been able to arrange for small payments each month and I am happy to say that at the end of this month the final payment is due and she will be all set. We've gotten her passport and all other documentation completed and will work in trying to put a little money away over the next two months to make sure she's got some spending money as well as her lunches (for some reason the trip total includes breakfasts and dinners but the kids will need to pay for their own lunches????). Otherwise she is all paid up and ready to go. The teacher/chaperone in charge has been holding monthly meetings to keep everything organized and on track. At this point (we just had a meeting last week), we are close enough where the kids are really starting to get excited. Ally has a few close friends who are also going and I think it's starting to hit them that its getting close. I am so jealous but SO happy for Ally to have this opportunity, and seem to be as excited as she is. Ally is one of those kids who never really seems to ask for anything. She works hard, keeps her head down, and just quietly keeps moving on. Despite the financial difficulty, Tara and I talked it over when this opportunity first presented itself, and given the option of "paying it off" with small monthly payments, we just felt like it was something she deserved, and we wanted to do everything we could to support her and make this happen. We weren't certain at the time that we would be able to pull it off and get it paid off as scheduled, but we felt that we had to make this a priority and do everything we could to try to get it done for her. Thankfully, as stated above, we are down to the final payment and are really overjoyed that she will have this opportunity!
And as for Tara...thankfully she is doing well. She has a follow up appointment tomorrow with her cardiologist and will also have an electrocardiogram to check on the progress of her Heart's recovery from her last crisis. At last check her numbers were showing continuing improvement and trending closer and closer to "normal". Hopefully this trend has continued and hopefully her "recovery" is complete, but we'll learn more on Wednesday. Unfortunately I won't be able to be at her appointment as I have my next chemo infusion also on Wednesday "across town". But we will keep in touch throughout the day to "update" each other on our simultaneous appointments. Otherwise, her Endocrinologist (the "key" doctor in her plethora of medical personnel making up her treatment "team") is happy with her current condition, and she is back to her stable medication (steroid/life sustaining protocol given her lack of adrenal glands) regimen.
Wow...I THINK that's about it for an update. I apologize for the length of
this update (if any of you actually read your way through this entire "thing"). I promise that I will do my best to update this site a bit more often (and therefor allow it to be that much shorter). Specifically given the upcoming tests (scans for me and ECG for Tara), I will do my best to update you all again within the next month.
I hope YOU all are doing well and again we simply cannot THANK YOU ALL enough for your well wishes, love, caring, and/or support (be it via email, voicemail, text, etc), and your donations. Again, we know how hard it is these days for anyone to find "extra" money to be able to donate to the bandtogetherforgary fund. Times are tough. Not just for us, but in general, times are tough. For you to be willing/able to find your way to make a donation is truly too much to ask/hope for. In addition, asking for help and admitting the inability to support my own family is the most difficult thing I've ever had to do (even MORE difficult than the treatment itself), yet here we are. Cancer doesn't give a damn about me, and what's difficult or not for me and/or my family. It doesn't care whether Tara is dealing with her own medical issues...it doesn't care about Abby or Ally and what they think or feel. It's simply a nasty, unyielding, unforgiving disease that takes hold of your life and takes over EVERYTHING! So again we thank you for everything you all have done for us and please know that it really does make a difference. The money, prayers, well wishes, love, support, etc..it ALL makes a difference. We love and appreciate you all!!
Gary Kane Thursday February 26
I know it's been WAY too long since my last website update and for those of you who have enquiries repeatedly about such an update I apologize if I've worried you but believe me it's been for a good reason. Just when we thought things couldn't get much worse...bang...did they ever. I think the best thing to do is to start chronologically...
Wednesday December 10 was an infusion day for me. You may recall that due to an allergy to my chemo drugs and their being close to my last treatment option, I was admitted inpatient to receive my chemo in a safe, controlled environment. That particular infusion was a bad one and it actually took 2 full days to get the infusion in me. During the procedure I had 2 separate allergic reactions and ended up being quite sick. Upon completion and discharge I returned home attached to my take home dose to complete the round and start my "recovery". As you may know the better part of the first week post infusion I spend quite ill. I am very nauseas with bouts of vomiting and am very exhausted typically spending most of the time asleep in bed. Usually rising to use the bathroom, take my meds, vomit, or trying to get some food in me. Well this round was no different.
As a brief segue...you may remember (or can read about on the home page of my website) that my wife Tara is also disabled having been diagnosed with Cushing's disease about 15 years ago. As part of her treatment back then Tara had her adrenal glands removed. A person needs adrenal glands for survival and Tara takes daily medications in the form of hormone replacements that without them can literally lead to her death in 36-48 hours. Unfortunately when a healthy person experiences stress either physically or emotionally, their body adapts and produces either more or less hormone to keep the body working effectively. With Tara, her body does not do this. She gets a steady, stable amount by taking her medications regularly. If Tara experiences extra stress, or is Ill and vomiting or diarrhea, her body is not able to adjust to such changes and we get her admitted to the hospital to receive stress doses of the hormone via IV to assure that she stays safe.
Fast forward now to this last January...with my diagnosis, illness, treatment, our financial problems, the weather, coping with Abby (our eldest daughter heading off to college this year, the holidays, this turned out to be a very stressful time for her. Usually (historically) I am able to keep an eye on such situations and together we are able to identify these added stressors in her life and adjust her medications (with the help of her endocrinologist) accordingly to assure proper intake of medication.
Now...as stated above, after my 2 day stint in patient for chemo I returned home to recover. As usual I was exhausted and not able to keep an eye on Tara. Ultimately, Abby came in to my room (so as not to disturb the regular running of the house while I recover I have been sleeping in the extra bedroom during these periods so I don't disturb Tara and the girls and vice versa) at 1:30 am, and awoke me. She informed me that Tara had been Ill for the last few days and wasn't acting herself and she thought I should go check on Tara.
So...I went upstairs to find Tara lying in bed VERY tired and listless telling me she'd been vomiting and has had diarrhea for the past few days. She then got up to use the bathroom. She called me in feeling too weak to get back to bed herself and asked for my help in getting her back to bed. On the way back in to her room she passed out in my arms. I was able to carry/drag her back to bed and immediately called 911. The ambulance came and found Tara in a semi conscious state with vital signs too low to register on their equipment. We were taken via ambulance to the local Jordan Hospital not far from our home. It was immediately obvious that Tara was in adrenal crisis and it was life or death. I informed the ER doc that Tara's treatment in the past had always taken place at the Brigham and Woman's Hospital in Boston and that they were very familiar with the intricacies of her rare illness as well as her past treatments. It became very clear that the docs at Jordan wanted NO PART of treating her. The problem was that she was too unstable to travel. They contacted med flight to have her airlifted to Boston. Unfortunately med flight couldn't provide a flight for about an hour. At that point a decision was made to use an ALS Ambulance to make the trip as it was deemed to be quicker and her best chance. It took about an extra hour until we could leave as again she was too unstable and there were valid concerns that she wouldn't survive the trip. Finally we made it to Brigham and woman's where Tara spent 2 days in ICU to get her stabilized, get the hormones in her an work her up to determine what if anything she was going on (ie, infection, long term damage to organs due to the adrenal crisis, etc..). After 2 days she was deemed ok to step down from ICU to a regular "med bed" in the main hospital. The next morning (about 4:30 am) I got a frantic call from the attending nurse. As her health care proxy they needed my permission to carry out an emergency procedure to implement an external heart pump and intubation. At some point Tara's hear effect envy had dropped from a "clinically normal" level of 60-80% and was currently functioning at 14% and falling. The plan was to place Tara in a medically induced coma to take all stress off of her heart by using this pump to act as her heart and see if by effectively bypassing her heart they could allow it time to see if it would continue to drop (at 10% she would be dead) or if the "rest" would allow it a chance to recover. I was also told that her other organ had also begun to shut down, that regardless of this process her heart was out of rhythm and she would need to have it shocked to get it back to a normal rhythm and that all if this decreased the amount if oxygen her other organs were getting which lead to some swelling if her brain. I was further told that I should plan to get to the hospital ASAP. They wanted me there to have access to quick decisions if more were needed and to possibly say my goodbyes if this didn't work. Finally I was asked I Tara had a religious affiliation and would I like a priest to be there just in case. Obviously she was also being moved back to ICU. For the sake of time and writer’s cramp I'll just say that she spent the next 8-10 days in a coma with no real changes and so no idea about a prognosis. The only thing keeping us going was the many tests run by the doctors showed that IF successful and IF not backslide, none of the tests indicated any permanent damage. We were informed repeatedly to brace ourselves for an extended (months) stay at a long term rehab facility should he come out of the coma. Finally...one morning, miraculously she opened her eyes and awoke. They only problem was the still presence of the brain swelling. Despite being awake she couldn't/wouldn't talk at all. I mean not a single word did she utter and she was completely unable to sleep. Her best nights provided mate 1-2 hours if sleep. She was like a zombie just staring away at us without saying a word and looking like a deer in a headlight. Again, for the sake of time...FINALLY...slowly but surely she began talking. The breathing tube was removed as was the external heart pump. Subsequent echocardiogram a showed that slowly (to this day) her heart is recovering. It's I'd up to 40% as of last week with a goal of getting to the normal range of 60% but MUCH better than the 4% at her lowest. Once she awoke and began to recover she was determined to get better as quickly as possible. After a total of almost 2 months she was moved to Spaulding rehab for strengthening, stamina building. We were told to expect this stay to be for a few months miraculously 10 days later she was discharged home. At present she is doing amazing. Each day she shows noticeable improvement. She Has a visiting nurse and visiting PT that come to the house a few times a week to help out and Abby who has taken the semester off of school to be here to help us out has been a Godsend really pushing Tara to get up, and get active. Abby assures that Tara accompanies her on a daily basis as she runs errands and sees to things around the house. This assures that Tara remains active and utilizes her muscles. While still a way to go to regain muscle mass, stamina, and energy, Tara is making her recovery in leaps and bounds and is back to functioning in everyday life as a health person, mother, and wife.
Unfortunately setbacks are expected and just this evening we brought Tara BACK to Jordan Hospital for treatment of double pneumonia. Over the past few days she's not been feeling great and having learned our lesson we decided to get her checked out early on to be sure that no crash is eminent. The ER doc DID give us a choice of admission or outpatient treatment. However to assure the best/quickest treatment (IV for both the pneumonia and to get stress levels of her hormone) we decided that she is best off having it all done and overseen as an inpatient. I hope that this is a short term (1-2 day) treatment to get to the pneumonia as quickly as possible and then back to her home based work. She truly is a medical miracle to have made it through this ordeal alive.
I want to take a second to thank a few people publicly here. First and foremost our daughters. There is no doubt whatsoever that had Abby not thought to wake me up that December 15 morning, me and the girls would have awoken the next morning to find Tara dead. According to the doctors she was touch and go that first night very likely would have closed her eyes and simply sifted off dead. Also Ally. Ally is a young woman of few words but she was a huge source of comfort, laughter, and love for us as we went thru this ordeal. Next is my in-laws (Tara's sister Tammy who was right by my side and helping define the medical info/ "doc talk". Tammy also alternated nights with me sleeping with Tara at the hospital allowing me to get home, check on the girls, and get some rest so I didn't get sicker myself). Tara's brothers and their families also played a key role. They visited almost daily and brought food, snacks, candy, and most of all LOVE to the hospital so whether in a coma or not Tara always knew she had her loved ones around her. On my side...my parents who selflessly dropped everything and drove up to Boston from their Florida home after the first call explaining what happened. They stayed a week with us and divided their time between the hospital and short visits to their hotel to get a few hours of sleep before returning to the hospital to be by our side. In addition, both of my brothers were either sitting at the hospital with me or were on the phone with me offering whatever help we could possibly think of. We also has awesome visits from Tara's friends and family such as Karen, Trisha, auntie Carol, Bev...etc. you know who you are. In addition, Mr. Curt Schilling formerly of the Boston Red Sox who in addition to providing many helpful words of wisdom took it upon himself to supply me with various items of memorabilia and has given me his authorization to use however I see fit as a means of fundraising. He has truly shown himself to be a man of exceptional character and quality and someone I look up to very much.
Finally to all of you (too many unfortunately to list by name, but u know who you are, as do we who donated money. Unfortunately as many if you know money continues to be out number one singular issue. I know how bad a shape we were in PRIOR to this ordeal. Can you imagine the added expenses we are just now bring informed of to cover the medical expenses associated with this whole experience. We are now on the hook for 2 ambulance rides, 2 separate stays in ICU which assures a nursing ratio of one full time nurse per one patient 24 hours/day including one extended stay during the almost two week coma, the cost of intubation/drugs/utilizing the external heart pump. We were in pretty bad trouble BEFORE all of this given the time of years and associated bills. Now adding this to the mix and I have no idea how we will ever be able to handle it all. Aside from being back in a position to need to humbly and without pride, beg for any assistance you can provide I am looking for any creative thoughts/ideas regarding the best way to sell/auction off all of the sports memorabilia I have been holding on to. These items can also be seen on my website. If anyone has any thought it suggestions in how to maximize the monetary return for such items I would greatly appreciate it. I just got the first bill from the first ambulance ride and it literally made me start to hake thinking about what's left to come in the near future. I am guessing it will be in the tens of thousands of dollars.
Anyways...whatever it is well worth the price in exchange for having my Tara back and please know how much any help you can provide would be greatly and forever appreciated.
To finish off this entry, I should report that my last set if scans showed that despite the chemo infusions causing me allergic reactions, the scans showed my lung tumors continuing to grow. Given this fact, and the fact that the infusions were so difficult on me it no longer makes sense for me to continue taking something that made me so sick yet was effectively not helping. So....a couple of months ago we decided to "nix" that particular regimen. I was started on a new regimen of chemo drugs. At least I no longer display a reaction to the new drugs. The question remaking is if these new drugs are effective. To that end it had been 4 infusions now on the new drugs and I will be going this coming Monday for the next set if scans. if the tumors are shrinking I will remain in the regimen...if not it'll lead to a serious discussion with my oncologist. I was made well aware that I can no longer afford and process that kills off health cells as this will leave me permanently affected by the process and we are not ready for that. There had been some talk about a new type of targeted radiation which I was denied about 6 months ago for that reason. The Radiational Oncologist felt that there was too much risk if killing off health cell tissue. However who knows. With the recent continued tumor growth I MAY now be a better candidate. Having completed a recent PET scan they may have s changed their outlook and therefor their mind. If not it will be a question regarding the possibility:availability of any new drugs on the market. At this point the outlook is simply put...not good. At present chemotherapy is my last, best, only treatment option and if/when I run out of those...that's it. It becomes a wait and see what happens. So needless to say we are hoping for a positive result from Mondays scans but we'll see. Until then my begging, asking, need continue to be money to try as best I can to pay down medical bills so as WHENEVER the inevitable happens I leave Tara and THE GIRLS in the best possible position.
Whew....there you are. Long I know. But it's been quite the past few months full of sorrow, fright, elation, stress, fear, happiness, sadness, and the unknown. I will try not to wait as long next time. Next week I should have more information about Tara's condition as well as my own scan results and possible treatment options.
November 19, 2014
As usual this update is full of good news and bad news. As you may recall from previous updates, I am now undergoing my chemotherapy infusions as an inpatient due to suffering allergic reactions to the infusions. After 4 such admissions, each one bringing on a severe reaction it dawned upon the allergists that perhaps they were looking at the wrong medication. Finally, 2 weeks ago I was admitted for my infusion and the separated EVERYTHING and slowed everything down. Finally, at 2:40 am I suffered an allergic reaction and thanks to the process there was only one medication dripping at the time. And so...all are optimistic that we have finally identified the culprit. So here we are...tomorrow I will be admitted for my overnight infusion and believe we know which med I am allergic to. So the plan is to PRE Medicare me with all types if allergy meds and slow down/prepare for that particular drug (Leukovorin for anyone interested), and see what happens. The hope is to finally get through the complete chemo infusion of all 4 meds without any type of allergic response. So we'll see. I will keep you all posted. So that's the good news. The bad...unfortunately for her, Tara's birthday this year (Nov. 27) happens to fall on both Thanksgiving AND the day I am scheduled for discharge from the hospital along with my regular "take home dose" of chemo. Not a great way to celebrate your birthday. I feel TERRIBLE for her. Thankfully, her sister Tammy has invited our family to spend the holiday at their house (also in Kingston). So our plans are to drive myself in tomorrow to the hospital and leave the car in the hospital garage. This way, on Thursday Tara will take the girls to Tammy's to celebrate the holiday and Tara's birthday, and when I finally get discharged on Thursday, I will see how I feel and either head directly to Tammy's to join in the festivities (hopefully) OR head directly home to bed and catch up with the family later in the day. Certainly not ideal for Tara but the best we can come up with under the circumstances.
I realize that, in comparison, this is a relatively short update but thankfully, from a medical perspective there's not a lot new since the last update. The allergic response really is what had us all (doctors and myself) so concerned. Otherwise treatment has gone pretty much as planned. Now that we have hopefully identified the allergen we can get back to treatment as planned. It will still need to be done as an inpatient as I will need to be monitored and medicated appropriately but at least we are hopeful that there will be no more reactions. Following this next infusion we will also likely be looking at it being time for the next set of scans to check on the effectiveness of the chemo. It will be 4 infusions since the last scans and that is typically when we look to rescan and check on how things are proceeding.
I have had MANY of you question the longer term plan and how long this round of chemo will last. In regards to that question, the answer is...indefinitely. Unfortunately, we have reached a point where chemo is my last, best, and only remaining treatment option. Unlike in the past, surgery, radiation, or any other treatment option we had, that results in the killing of healthy lung tissue is no longer an option. I have lost as much lung tissue as I can afford to lose without leaving me with permanent negative effects (chronic need for oxygen, etc). I am no longer a candidate for surgical procedures or radiation. And so...that leaves chemotherapy. We tried over the summer (you may recall) to take an extended break and take the summer months off to get a break and we didn't last the while summer as hoped. We saw from scans that without the chemo the cancer began to grow again. We ARE however aware of the possibility of my body becoming too used to the chemo thereby risking its long term effectiveness WITHOUT occasional breaks. And so...for now the plan is to continue on the chemo indefinitely with occasional "short term" breaks of lengths still to be defined.
At present, I am HOPEFUL to be able to take about a 3-4 week break around Martin Luther King Jr. Day to take a trip down to Florida to visit my parents. This trip would give me the opportunity to see them but, as importantly it would allow me a bit of a break from chemotherapy and allow me to gain back some of my strength. Unfortunately, this is a fairly expensive time to travel and when the initial opportunity arose to book the flight I just simply couldn't afford the cost of the ticket. I am still hopeful of booking this trip but to e honest it's gonna come down to my ability to afford it. With the upcoming holidays, we are already working in trying to put some money aside to be able to buy the girls a few small presents. Given this focus it seems unlikely to be able to ALSO afford an airline ticket to be able to make the trip to Florida...but I remain hopeful. Its funny how The opportunity to get a break from chemotherapy can be a motivating factor for a lot of things...ha. So...we'll see how it plays out but the point really is that this will be the general game plan...it will be continual chemotherapy every two weeks interrupted by occasional breaks for various reasons. During these breaks (depending upon their length) we will scan periodically to determine what happens with the cancer. The behavior of the cancer during these periods will ultimately be the deciding factor in how long the breaks can/will last.
So there it is...the good, the bad, and the ugly. I would also like to take this opportunity to thank you all for your continued support in a whole variety of ways, and to wish you all a VERY HAPPY THANKSGIVING. God Bless You All. I will look up update this site again as new information makes it worth while to pass along.
October 27, 2014
They say that "No News is Good News"...They also say that "To Each Rule There's an Exception That Probes The Rule." This day has seen both idioms ring true.
Today was my appointment with the Allergist to try to determine the cause for my previous two allergic reactions to my Chemotherapy. Unfortunately the allergy testing remained negative leaving us no closer to determining the cause of my reactions BUT ensuring that for the foreseeable future all infusions will continue to take place as an inpatient, beginning this coming Wednesday.
As if this news weren't bad enough, we received word from NStar (our utilities company) that our payments are long over due. This means that they are getting ready to turn off our utilities leaving me in a difficult position since I need the electricity to continue in order to run my oxygen machine to assure that, particularly while on my Chemo, I am able to receive my much needed oxygen.
As luck would have it, hours later I got a call from Abby that she was officially informed that we owe back tuition to a total of about $1,450 and that her account is on hold and that she is unable to register for spring classes until that bill is cleared up.
What a day...I'm afraid to answer the telephone wondering what the next shoe to drop may be.
On the ONLY positive note, you may all see from my website that thanks to Curt Shilling's generosity we have some memorabilia he graciously autographed that I am hopeful will entice people to make "auction/sale" bids that can be used to help fund these various needs. Unfortunately time is of the essence and any money realized from this "sale" will hopefully be quick in coming so, PLEASE if you see anything you like or may have an interest in I would BEG of you to move on quickly as I need to get these bills paid. Historically with NStar, as long as I can provide them with a note of medical necessity from my Doctor, AND a form I fill out for financial need, they have agreed to keep my utilities running. This time however, the bill has reached a point where despite their hopeful agreement to leave services active, they have made it known that a substantial payment is also needed to assure uninterrupted service. And as for Abby, it is simple...pay up the money or the account remains on hold. Oh well...as usual we will find a way. We always do. The only downside to these issues is the timing. I am due for my next infusion in 2 days which gives me VERY little time to handle the situations before I begin to suffer the side effects of treatment and become unable to focus on taking care of anything. Thankfully, as usual, I have my brother Neil to rely upon to make sure that any financial transactions are taken care of. He's already taken steps to put up the pictures and some information regarding Curt's memorabilia and has assured me that he will handle this situation. I don't know what I would do without him.
Lastly, every year my brother Larry gives me 4 tix out of his season tix package to the Patriots game. Every year myself, Larry, and 2 HS friends of our enjoy attending a game. Unfortunately, this year's game is scheduled for this coming Sunday. It is always a day I look forward to VERY much. It is a GREAT chance to catch up, spend some nice time together, and see a great game (this year's game is the Pats vs. the Broncos). Unfortunately the combination of funds AND the fact that it falls only 2 days after I unhook myself from me chemo means I will be too broke and likely way too weak, nauseas, and I'll to make this annual outing. Unfortunately I have spoken to the other 3 friends involved and have given them the go ahead to find a fourth to take my ticket to assure that at least they are able to enjoy the game without the risk of my holding them back. As sad as I am to be missing this annual outing I think it the best decision as I just don't think (particularly with my infusions being inpatient and more involved) that any of us would truly enjoy my presence. As they say around here...oh well there's always next year.
So that's been my day. The only good news is that I get the opportunity to go to sleep and see what tomorrow brings. If I seem "down" and "depressed" I guess I am a bit...however, I have learned that days like this are not unusual when dealing with the effects of Cancer and I know that as bad as today has been, there WILL be days where things go my way and the news will always be good. So PLEASE...I beg of you, do not feel bad for me. We will get through all of this and live to fight/enjoy another day. This update is meant NOT as a means to complain and sing the woe is me song. There are still MANY out there much worse off. The object of this entry is simply an update as to today's situation and to inform people of the auction/sale of Curt Shilling memorabilia and the encouragement for all to check out the items up for bid and to request that you all make an effort to help is through this difficult time by offering to bid/buy these items. Any and all proceeds with go directly at first to help cover Abby's educational costs and any left over funds will go towards the paying down of our NStar utilities bill. To any/all of you who have already donated to the www.bandtogetherforgary.com fund I thank you from the bottom of our heart and I remind you all that ALL donations are appreciated and welcome even if you have no desire to bid on/purchase one of Curt's autographed pieces of memorabilia. We are happy/grateful to accept ANY donations at this point either directly related to the auction or not and we thank you from the bottom of our hearts.
October 4, 2014
You may note that this update is coming a bit sooner than the time span between most of my updates. Unfortunately it's due to a negative event suffered 2 weeks ago. On that date I was due for chemo infusion number 3 of this current round and number 16 of ALL infusions since diagnosis. On that day, 2 weeks ago I arrived at MGH for my infusion as I always have...my IV port was accessed, labs were drawn, and I saw my oncologist on schedule. The lab results looked good and the green light was given for the infusion to proceed as scheduled.
About 45 minutes in I began not to feel so well. I went into the bathroom when I started a coughing jig that led to dry heaves. Upon feeling a bit better I went to the sink to wash up and took a look in the mirror. The only way to describe what I saw was my entire face and neck the color of an eggplant. I've never quite seen anyone look that color before but I knew it wasn't natural in any way. I exited the bathroom, returned to my infusion chair and buzzed for my nurse. Immediately upon seeing me she told me that I was suffering and severe allergic reaction. Within seconds 7 nurses, 2 Nurse Practitioners, and a Doctor came "flying" into my room. They immediately hooked me up to all kinds of monitors, gave me an immediate injection of benedryl and some other medication, stopped the chemo and began observations.
Apparently this reaction while rare, is not unexpected. It is caused by an allergic response to one of the chemo drugs, Oxalyplatin, which over time, when the concentration of the drug builds up in the body with repeated introduction via infusion can cause such a reaction.
As you may recall from previous updates, chemotherapy is really the only treatment option I have left and the Oxalyplatin is one of the key chemo drugs in my treatment regimen. So...it is necessary to find a way to continue its use. The answer began with an immediate referral to the Allergy Team to determine the level of allergy. As an additional footnote, we also reached the regularly scheduled time frame for CT scanning to check on the state of the 5 "spots" on my lungs and their response to the chemo.
So both appointments were scheduled for last week (Allergist and CT scans). As for the scans....finally some SEMI good news. The scans show a "statistically insignificant", yet small DECREASE in 2 of the tumors and no change in the other three. Furthermore, there appears to be no other new tumor growth. This is about the best we can hope for and shows the chemo to be doing what we hoped it would do. As mentioned many times in previous updates, we know that chemotherapy will not CURE my cancer but when effective, as it currently seems to be, it works to keep the cancer in check and works to buy me more time. At this point, and until new treatments/cures are discovered, the best we can do is to continue to buy time to see that day.
As for the allergist appointment, and after undergoing numerous and varied testing, the recommendation is to continue with chemo but to have it done as an inpatient. The theory is to utilize 3 different "concentrations" of the medication and to slow down the infusion over a much greater time period. To explain...my usual out patient regimen of this particular drug is to have a 10% concentration infused over a 2 hour period. The new regimen will be to start off with a .05% concentration and infuse that over a 3 hour period, then to increase to a .5% concentration for another 3 hours, and finally to utilize a 5% concentration over 3 hours. Without getting into the scientific details (partly because I don't quite understand them myself), in essence I will end up with the exact same "amount" of the drug just infused in a safer way in regards to the allergy. In addition, by doing it as an inpatient and spending the night I am hooked up to monitors to allow them to catch any potential reaction before it can become dangerous AND they can monitor me for a few hours after the infusion to make sure that I will have no problems following the infusion. AND...after this particular drug goes in, they can continue with the rest of the drugs (I get 4 different chemo drugs in total), they can "hook me up" to the final drug which is the one I go home with and disconnect myself at home after 2 days.
So....this past Thursday was my first inpatient chemo day and the results were good. Unfortunately because of my high blood pressure we did have to hold one of the other drugs which can cause an elevated BP and so they didn't want to take any chances but as we continue to work on stabilizing my BP this will hopefully be only a one time measure. As for the process, it was pretty smooth. It was comfortable and the staff at MGH are great. Unfortunately I am assigned a nurse on a 1:1 basis and I am their ONLY patient. They are assigned that way to make sure that vital signs are taken and I am checked upon EVERY 15 minutes for the entire hospitalization. You can imagine that it does not lend itself to much sleep or rest but I guess for one night every 2 weeks I can deal with it.
So that's it...that's the plan. The good news is that I can remain on this drug which is a key to continuing the chemo regimen that, as stated, is vital to buying me time as it does seem to be working (as confirmed by the scans)...the bad news is that in order to continue this regimen, I need to be hospitalized over night every 2 weeks in order to continue.
So that's the update for now. I will continue to update things here as we go along so please check back.
Please check back in a few weeks for my next update which will likely give information on an auction I will be having to include some very special sports memorabilia (including various baseball related items autographed by former Red Sox, and Hall of Fame worthy, Pitcher Curt Schilling)...details will follow in a few weeks (hopefully), as Curt and others have been extremely generous to donate these items to me for use as a fundraising tool to help us in our continued need for ongoing assistance. Although still premature (until the auction) I thank Curt and I thank all of you who will bid on the items available. Thank you all for taking the time to read this update, as well as all of the donations, prayers, well wishes, and positive thoughts. Every little bit helps and is greatly appreciated. God Bless You All
Gary KaneFriday September 12, 2014
Well...where to begin? I know it's been a little while since the last update so I guess I'll start off by saying its been a trying couple of months full of both good and bad, and often times one leads to the other. For example..the good is that Abby turned 18 and last week was dropped off at Worcester State University to begin life on her own. We are so proud of her and she is a tremendous young woman...the bad...Abby's turning 18 means we no longer are entitled to collect social security benefits for her living expenses. This may seem little enough but in reality it is a quarter of our total income no longer coming in. While true, we no longer have to support her living at home, we still have to support her at school AND somehow pay her tuition. To be honest, I have no idea how we are going to do so but we WILL find a way. Another example of good/bad...I have restarted chemotherapy (about a month ago). The good is that hopefully it will help keep the Cancer under control. The bad....dealing with the side effects of chemo. I find myself spending the whole week after an infusion nauseas, vomiting, exhausted, "foggy", and weak. Unfortunately there are no other treatment options for me so its a case of shut up, grin and bear it. Which I will.
Finances continue to be a mess. Because we rent our house, most tax bills come thru addressed to us AND our landlords. I typically ignore them knowing that the landlord handles them without the need for my prompting. Unfortunately, given this I got confused and mixed up the bills for the property tax and the excise tax on our cars. It wasn't until we went to register the car that I was told we couldn't register until we paid our back excise taxes. Obviously, when living on a budget you try to keep a little aside for "emergencies". This emergency however is far more than what we keep aside. So at present we have 2 cars and neither is currently registered. Oh well..it'll just have to wait until the next social security payment and hope we don't get pulled over in the meantime.
So...as you can see its been a couple of months like this. It certainly makes me long for the summer days just a few months ago when it seemed that all was going well...money was under control, I was taking a break from the chemo, etc..BOY, do I miss those days. Oh well..welcome to living with Cancer huh?
Ok...that's enough negative thinking for today..on the bright side, Ally too is back to school and picking up right where she left off...drama club, math team, key club, student council, honors classes. I don't know how she does it but she does...and does it all so well. It's such a joy watching her.
And Abby, off on her own, getting into and enjoying her new college classes, joining clubs, making friends. I still can't believe that my little girl is in college. I'm so proud of them both.
Thankfully, Tara continues to feel ok health wise. Like everyone, she has her better days and some not so great but overall, given the possibilities she's doing great.
Once again I would like to thank everyone who has continued to donate to the www.bandtogetherforgary.com fund. As you know from above, every donation no matter how large or small is extremely helpful and goes directly to paying the bills. A special thank you to Cousin Shelley for purchasing a television set for Abby to have at school. She currently has no room mate and the first few nights alone at a new school, knowing nobody, was pretty tough for Ab, but thanks to Shelley, the comfort and familiarity of having a TV went a long way to easing her concerns. Thank you.
So the plan is to continue chemotherapy for a while. After another month or so we will rescan and get another glimpse at the spots on my lungs to try to gauge the effectiveness of the chemotherapy. Hopefully it is doing something positive but we'll see. We'll plan future treatment based upon those results so I will update you all after those scans and let you know where things stand then. Again thank you for everything. Every dollar, every prayer, every thought, all make a huge difference and give me the energy to fight on. They make the tough days a bit easier to get thru. We couldn't do it without you all. Thank you and God Bless You!
Monday June 30, 2014
I know it's been a while since my last update and again I thank all of you who have called, emailed, texted, or simply mentioned in conversation, that it HAS been a while. Thankfully, up to now, it's been a pretty quite couple of months with little to report. You may recall that in April we made a decision to take a break from the chemotherapy to give my body a chance to recover a bit from the effects of the cumulative dosage of the toxic chemo drugs. At the time our tentative plan called for labs and scans every six weeks or so to keep an eye on the five or so cancerous tumors still in my lungs. The hope was that we could enjoy a summer (at least) without dealing with all of the negatives involved with active chemotherapy. Things started of fairly well as the first set of scans/labs came back looking "ok". Specifically there are two key pieces of information we look at to determine the cancers activity at any point in time. The first is a blood test to determine the "CEA" levels. Without getting too scientific (thankfully), this was explained to me as something the body produces naturally in the fetal stages. Once born however, the body stops producing this chemical and therefore lab results (particularly in adults) should be fairly close to "0", as the body no longer is producing this antigen. For some reason however, in Colorectal Cancer patients the body once again starts producing this antigen. So...the lower my CEA level is the better the indication that the Cancer is not as active, and of course, the higher it gets, the more active the Cancer. Apparently the actual number is not exact and by itself is meaningless but the trend of the CEA level (rising or falling over time) is a fairly good indicator.
The second key piece of data, of course is the actual CT Scans of the chest, abdomen, and pelvis. It is on these scans that the doctors can really see just what is going on. By comparing each successive scan they can tell whether there seems to be any new spots or if the already identified tumors have grown or shrunk. So, the first set of results after suspending the chemotherapy treatments showed a fairly small increase in the CEA level, and some fairly small growth of the tumors. This was to be expected. We knew that once we halted the chemo there was nothing fighting the cancer and, left untreated, we assumed that it would continue to do what Cancer does.....grow. What we were happy about was that the growth was fairly small, indicating that, at the time, the Cancer was still fairly small and slow growing. This gave us some hope to be able to continue on with the "chemo holiday", and further hope at making it through the summer without the need to restart.
Unfortunately this is not to be. Last week was the most recent set of scans and labs, and in contrast to the previous results, this time the CEA level almost doubled and the tumors growth was a bit more significant. In meeting with my Oncologist last week, it was his opinion that the time had come to restart the chemotherapy. In talking it through I WAS able to get him to agree to at least give me one more month to enjoy before getting back into all of the terrible effects of the chemo. We decided to wait out July and start up again the first week of August (August 5th to be exact). And so, while not quite making it through the entire summer, we were able to get a couple of months of a reprieve, and have/will continue to enjoy every moment of it.
That's the "bad" news....the good news is that I've been feeling much better/stronger during this "break" and we have been enjoying the time. Thankfully, Tara and the girls have been doing well and we've been enjoying all being together. In addition to "us", Abby's boyfriend, Rob, is up from his home in Florida, and has been spending the summer with us. Both Rob and Abby have jobs and have been working hard, while still finding the time to spend together and with the rest of us. Abby is getting ready for college next year, and will be attending Worcester State University where she will be studying early childhood education, in her hope to ultimately become a speech pathologist. We had a great time at her HS graduation and were thankfully able to share the day with my parents, Tara's mom, and other family members. I couldn't be more proud of her for all of her accomplishments. Similarly, my pride extends to Ally, and what she accomplished this year. In addition to all of her activities...golf team, drama club, choir, a cappella group, student council, key club, etc..., she managed to keep up her studies and received ALL A's in her honors classes. We are not so sure where she got her brains from but watch out for her...
OK, fatherly gloating over...otherwise, Tara and I have just been sitting back, watching the girls grow, and enjoying every moment together. I must admit that I am dreading the end of summer this year far more than most. In addition to the obvious weather related benefits of the summer months...the end of summer this year spells our coping with me being back on chemotherapy, Abby's leaving the house to "spread her wings" at college, etc. It will be MUCH quieter and less "exciting" without having her energy around.
So that's about it for now...that's the update. I will look to update things a bit more "regularly" over the upcoming months as the restart of chemo should lead to more frequent information to fill you all in about. Once again, I would like to end this update by thanking you all for actually caring enough to read this website and to further thank those of you have been so generous in donating to the Band Together For Gary Fund. I TRULY don't know how we would survive without your donations. We just received a letter letting us know that any social security funds we receive dedicated to Abby will end with her 18th birthday in July. While true that Abby will no longer be living at home, we had planned on that money to help (a huge amount) towards paying for her college and living expenses. It kind of hit us like a ton of bricks. I guess I should have assumed that this would be the case, but never actually realized that social security benefits on behalf of the kids actually end at age 18. Like every other punch we've taken since I got sick, we'll find a way to deal with this one as well. I'm not quite sure yet how, but one way or another, we'll get Abby through college. It just doesn't seem fair to not find a way to make it happen. Cancer just seems to find a way to take over everything....physically, emotionally, financially, mentally, etc..just like the cancer itself it just keeps coming. Slowly, steadily, at it's own pace, it just seems to keep on taking. And unfairly, it doesn't just effect one person, but hits those closest to him just as hard. But we are NOT giving up, and will continue to fight on. Thanks to all of the love and support we get from all of you, we will continue to battle on every step of the way.
So...thank you once again to every one of you, and for those of you interested, I will update you all again soon, as we prepare to restart chemotherapy and wind down the summer months. We wish you all a VERY happy, HEALTHY 4th of July holiday
,Wednesday April 23, 2014
Addendum to recent update
It has dawned upon me that I forgot to include another piece of the puzzle which I am cautiously optimistic about a further success.
As a clinical social worker I would be remiss not to include a new adjunct to my treatment. As you may recall from earlier updates I have been suffering periodic difficulties with my breathing which have become fairly scary as I seem to experience "episode" where I simply cannot get my breath. It seems like each breath "hits a wall" and doesn't get through. I have experience such episodes approximately 6-7 times and in all different locations and situations. Aside from bring scary when they occur they are also embarrassing when they take place in public settings. I have always chalked them up to side effects stemming from losing so much lung tissue. In discussing with my Oncologist, we have come to believe that while the lack if lung tissue may certainly (and likely) and exacerbating factor, the attacks themselves are more likely Panic Attacks. As a me tal health professional I have certainly heard about panic attacks and have actually treated my share of patients hogan odes with such anxiety I have never actually experience them myself. Let me tell you, they are NO joke and can be very scary and even debilitating when they occur. So...I have been referred to both a Psychiatrist (who's main function is to look at any pharmacological treatments (medications for anxiety), AND a Psychologist to employ a well known treatment option called Cognitive Behavioral Therapy (CBT) which looks at triggers, cues, means of "reframing" etc, as a means to hopefully recognize the precursors to a panic attack and to "break" the chain of events and thereby stop the panic attacks from occurring. Both treatments seem pretty promising as means to help out and deal with this issue once and for all. It is still e army in treatment as I have only seen each practitioner twice so far, but both seem very promising and it has been about a month since the last episode so they must be doing something right.
So there it is...it dawned upon me that I point out all of the negatives in treatment, side effect, test results, etc..to be fair I thought it important to point out the positives in treatment as well. And while still a bit early to consider this a complete success and "positive" it is certainly helpful so far and seems to have the potential of curing at lest one distressing symptom.
That's about it. Sorry about the addendum but I simply overlooked this aspect of things in my original update and wanted to set the record straight. Thanks again, to you all for reading along and keeping up to date on the Battle.
GarySaturday April 19, 2014
First of all I would like to wish you all a very happy Passover/Easter. I cannot believe it is the middle of April already. I apologize for WAY to much time passing between updates and thank those of you who sent me messages reminding me of this fact. I don't know where the time has gone. In looking back, my girls were on February vacation at the time of my last update and lo and behold, here we are with them currently on April vacation. WOW!!
And now...to the update. The last week of March I joined my brother Neil on a trip to Florida to visit my parents (financed by them thankfully)...more on this later. The relevance of mentioning it at this point is due to it being the beginning of some fairly significant changes in treatment. First of all I should mention that the week prior to our trip turned out to be very scary for me. We are still not completely certain of the cause but be it the effects of a bronchial infection, a mild pneumonia, or simply the first of occasional "episodes" due to the effects of so much lung tissue loss, I suffered a VERY difficult week with my breathing. I was wheezing constantly during this period and quite literally found myself unable to walk even the shortest of distances. Simply standing up and walking from my living room to my kitchen left me breathless and panicked in my inability to catch my breath. I DO have an Albuterol rescue inhaler to be used for emergencies (similar to those used by asthmatics for severe attacks), and found myself using it about 7-10 times a day for the week. Anyone who has ever choked on a bone or some other food item will understand the fear that takes over when you are unable to get a breath. This is how I felt. A trip to the Oncologist led to all kinds of tests to try to determine the cause, and all testing was inconclusive. I was getting close to feeling the need to cancel our trip as I just couldn't imagine being able to get to the car and then the airport, NEVER MIND actually making it all the way to Florida. Luckily the symptoms seemed to disappear just as inexplicably and as quickly as they appeared about 3 days prior to our departure. Needless to say it was a scary experience. During this time (and visit to my Oncologist), a few other issues arose. First of all, they noticed that over the past year or so in particular, my blood pressure and heart rate have remained extremely high. While possibly a side effect of chemotherapy, the high readings preceded my restarting chemo for this round. Given the high readings, I have had no less than 5 EKG's done during this period, all of them confirming the readings but failing to identify an underlying cause. So...to play it safe I have been referred to a cardio-oncologist for a more detailed evaluation. This appointment is scheduled for a week from Monday. Will keep you posted in the next update. In addition, these "episodes" during which my breathing becomes erratic has become a real source of anxiety for me. I am unable to feel them coming on, cannot control them, and never know where or when one may strike. This anxiety only works to exacerbate the attacks and cause me to, in effect, experience a severe panic attack. Given this, my Oncologist also felt it may be helpful for me to see a psychiatrist to see if there may be a pharmacological aid to at least decrease the anxiety associated with the attacks and a psychologist to help with some cognitive behavioral therapy. This may help me to identify any possible triggers that may help as well. Part of me is fairly "bummed out" by all of this I kinda feel like adding more specialists just works to muddle an already extremely muddled situation. As it is I spend an average of AT LEAST one day a week at MGH during non chemo periods and anywhere from 2-4 days a week there during chemo. Now adding 3 new specialists....well I may as well just move in to the hospital with all of the time I'll be spending there. Between my Oncologist, his Nurse Practitioner, the oncology phlebotomist responsible every 6 weeks for flushing my chest port, the surgical oncologist, radiational oncologist, palliative care/pain doctor, primary care physician, cardio-oncologist, psychiatrist, psychologist, chemo oncologist, and chemo nurse specialist (who actually administers my chemo), I think I see just about every doctor with privileges at MGH. But.....in the end, if it will help and make things better, I guess I'm in!!
Another result stemming from this urgent visit prior to our Florida trip was more bloodwork AND another CT scan. Apparently they were able to diagnose a MILD pleural effusion which they do NOT believe was the cause of my symptoms however...you may remember (and to avert the risk of this update lasting forever I will not get too detailed here but if interested in further detail I would direct you back to past updates) that one SEMI reliable test to help determine the behavior of the tumors is a simple bloodtest for CEA. CEA measures the amount of a specific colon cancer antigen. The higher the number, the more antigen your body is producing theoretically because tumor growth is occurring. Over the past 3 years my CEA level has either risen consistently OR, during the first round of chemo (2+ years ago), the treatment, while not successful in lowering this number, kept it steady and constant, which was a good thing. Anyways, since starting this round of chemo, my CEA levels have consistently DECREASED every month. Again, not to get too far ahead of ourselves, this test is only SEMI reliable, AND despite the decreases we know that at present, any treatment goal for me is NOT curative but works to buy me time. I still have stage 4 colon cancer that has metastasized and cannot be cured. That being said...it is a MUCH better feeling knowing that the levels are decreasing rather than the opposite. In addition, since restarting chemo, CT scans have also shown very small yet present shrinking in the size of the tumors. Again, as above, this is not indicative that the tumors will continue to shrink until they are gone, but some shrinkage, no matter how minimal, is better than growth. Ok, there's the set up...now the BOOM! During this urgent visit, i had both a CT scan AND a CEA test and unfortunately, for the first time since restarting chemo, the tumors actually showed some GROWTH and the CEA level has risen. OUCH! Now I DO want to keep this in perspective...in both cases the changes were VERY VERY small. Those of you who ever took an intro to statistics class will recognize the terms "not statistically relevant", and "within one standard deviation". this means that the changes really are NOT indicative of the train coming off of the tracks...BUT...I would be lying if I didn't admit to some level of disappointment that after 6 moths of chemo and positive test/CT scan results throughout the entire course of treatment, it was disheartening to get these specific results. But, as they say..it is what it is, and could've been much worse.
Now some good news...In order to be able to travel and to assure some level of strength, we decided that I would skip the chemo treatment scheduled just prior to our leaving. This meant that once this weeklong "breathlessness" mess cleared out, I was feeling pretty good and fairly strong. This allowed me to travel and enjoy my trip as much as was possible (and I did). Upon return (Tuesday 4/1/14) I was scheduled, and underwent my usual chemo infusion. During my visit with my Oncologist that day (we always meet the day of an infusion, just prior to the infusion for labwork and a checkin to be certain that it is safe to infuse), we reviewed everything (results, side effects, etc). The ONE side effect of my particular chemo regimen which will NOT resolve upon ending treatment is neuropathy. in layman's terms, neuropathy is the killing off of the nerves, particularly in the extremities (hands/feet, fingers/toes). This, ultimately will likely be the reason some day for deciding that chemotherapy will no longer be a valid treatment option for me. While not to that point yet, it has been found helpful to take periodic breaks from the chemo treatments. In addition, it is a well known fact that me and chemo don't really get along that well. While not at all uncommon for this to be the case, chemo effects not just my extremities but my liver as well. During chemo, my liver function tests tend to skyrocket and need to be watched closely. This is all above and beyond the "standard" EXHAUSTION, SEVERE NAUSEA/VOMITING (I've lost over 20 lbs from this alone), and other more common side effects.
so, in our discussion this time around we have decided to take a break (YAY!). We are going to shoot for a break of about 3 months, BUT...we will take it in 6 week chunks. Every six weeks I will go in, have my chemo chest port flushed, labs drawn, and scans done. IF, the results show that the cancer is being kept manageable, we will repeat the process in another 6 weeks (hoping to get 3 months out of it). if, on the other hand, the tests show the cancer becoming more active, we will restart the chemo immediately. it's funny...with all of the hatred/dread I feel regarding chemotherapy I have such mixed reactions to a plan like this. The thought of 3 months chemo free, to spend the summer months with Tara and the girls without the next infusion always looming, feeling strong, feeling good, is AMAZING! and more than I could hope for. At the same time, the thought of 3 months with nothing happening to fight against the cancer growing in my body, is terrifying. Since my diagnosis i have been in NON-STOP treatment of some sort. There's always been something going on to battle to cancer growth/spread. At first it was the initial colon surgery, this was followed immediately by chemo, then right into chemo/radiation together. Then came the 3 lung surgeries with only enough time between to recover from the previous surgery, and then right into this current round of chemo. I could sleep each night confident that we were doing something to help keep the cancer at bay....and now....3 months of nothing. What's going to happen? What is the cancer doing inside? is it growing? spreading? i suppose the six week check ins will help in catching anything in enough time to get right back to it but still...6 weeks seems like a long time. And then...how will I feel, hoping for this 3 month break, if I learn after 6 weeks that its growing and I need to get right back to chemo? disappointed? I'm sure. BUT...I suppose there's no sense in worrying about things out of my control. For now anyways, my plan is to enjoy as much (or all) of this relief as I can. School will be out soon and I hope to spend a nice, full, happy summer with all 3 of my girls and making the most of it. As I've said MANY times, I am so lucky to have Tara, Abby, and Ally in my life and there are so many out there worse off than I. I am going to revel in my luck and enjoy what I have coming.
O.k., medical stuff out of the way...thankfully Tara is feeling well these days, and aside from Abby needing to have an infected, impacted molar pulled this coming tuesday (the poor thing has truly been in agony for the past week while they get antibiotics into her to kill off the infection and allow the surgery to take place), all are well health wise.
I am so very proud to let you all know that Abby has decided to study early childhood development next year at Worcester State University. We couldn't be more proud and/or more happy for her. In the meantime she continues to work her butt off and will spend her summer alternating between working and simply enjoying her last summer before starting college. Her boyfriend Robbie is planning to come up from Florida to take her to her Prom, attend her graduation, and I think they are quietly plotting to hit us up with a request for Robbie to spend the summer with us. In initial discussions, my view has been that as long as he finds a summertime job, and CONTINUES to respect the rules of the house (which has has ALWYAS done), AND Abby does the same....I'm ok with it. She seems to have really found a "good one". They obviously care quite a bit for each other and I am so grateful that she has had him in her life while we all cope with my medical issues. His support, and shoulder to lean on has been a Godsend for Abby over these past few years. In fact, I think highly enough of him that while in Florida (he lives only about 30 minutes from my folks place), I met up with him and the two of us spent a beautiful (and successful I might add) day aboard a chartered deep sea fishing boat. It really was a lovely day.
As for Ally...what can I say? the 3rd term report cards just came out and as usual, despite taking all honors classes, she still made all A's. In addition, she seems to be keeping herself hyper-busy between choir, A Cappella, student council, key club, math team, and recently (apparently she didn't feel like she had enough on her plate), she joined the golf club (no pun intended). She is an amazing young lady who is able to juggle more in one day than I could manage in an entire year. She just seems to excel in whatever she sets her mind to. Another father's dream.
I would be remiss if I didn't just take a sentence or two to acknowledge what a proud, hectic year this is for the extended family as well. Along with Abby, we have 2 other members of the Kane family who will be graduating high school this year. My brother Neil's daughter Andrea and my brother Larry's son Devin. This is just the beginning over the span of the next few years, between the Kane's and Tara's extended family we will be lucky enough to witness 15 children, nieces, and nephews graduate high school. It all starts this year. I am so proud that all three will be attending college next year, with Abby choosing Worcester State, Andrea is planning on attending Lasalle (here in Newton, Mass), and Devin still deciding but I believe I heard he's narrowed down options to University of Connecticut or University of Vermont. Congratulations to all three of you and your parents. We are all so proud of you.
Finally, as I've alluded to numerous times throughout this update I also want to thank Neil and my parents for a fantastic trip down to Florida. We had an excellent week full of sunshine, plenty of much needed rest and relaxation, and a week full of stuffing ourselves silly with excellent meals. It truly was, just what the doctor ordered.
And so now (HOPEFULLY, after the winter we've had I guess I shouldn't speak too soon), summertime is coming. I would also be remiss if I didn't once again acknowledge and thank you all for your continued support through prayer, love, communication (emails, texts, phone calls), and unfortunately most of all financially. Between prom, graduation, upcoming summertime expenses to assure that Abby has whatever is needed for her to head off to school this fall, and the HUGE elephant in OUR room....college tuition, room, and board...we simply couldn't do it without you all. As I have stated here on this website MANY MANY times, having to admit to your wife, children, friends, and family that you (I KNOW it is sexist and I apologize but I guess I am old fashioned when I say...particularly as a man..) are unable to support your own family is the worst, most embarrassing thing I have ever had to say. To come from a position of relative success, working as an executive manager, earning a good living, having set aside a nice little "nest egg", and providing well for my wife and children to where we are now, having to rely on others just to be able to pay your bills, nest egg long gone (to medical bills), renting a house (rather than owning your own), having to decide which bill gets paid today and which will simply have to wait for that next disability check to arrive...is a nightmare I NEVER thought I would have to even consider never-mind actually live. To have to watch your wife and children "make do" with what they NEED versus what they WANT, is truly heartbreaking. Don't get me wrong, I am aware of the millions of people in our world living in conditions worse than this, for all kinds of reasons both deserving and undeserving, but it doesn't make it any easier or any less difficult/embarrassing. BUT, with all of this being said, we are keeping our heads up and moving forward. Thanks to many of YOU, we are able to do so. We have an advantage over many others...we have the love and caring of an incredible family and an awesome group of friends who continue to rally around us and refuse to let us quit. Giving up is simply not an option. I have an amazing wife, 2 incredible daughters, and all of you who remind me every day of how lucky I am and how necessary it is for me to battle on, stay strong, and refuse to quit. Thank you all from the bottom of my heart!!!
I will plan to update you all in about a month when I am due for my next oncology visit, blood tests, and scans. I wish you all a happy Passover/Easter and hope your summer is as awesome as I plan to make mine.
yFebruary 26, 2014
As February draws to a close I realized its been a little while since my last update and a fair amount has occurred. I guess we"ll start with the medical "stuff" since that's really the intent of this website...February marks the 3 year "anniversary" of my diagnosis. It's a real milestone as we simply didn't know if I would even be here 3 years years ago (the initial prognosis was 2 1/2 years. We are all well aware of the negatives involved...the fact remains that I have stage 4 Colon Cancer that has spread to my lungs and remains incurable. At this point in time, there simply is NO cure for what I have. Hopefully technology and research will continue to move technology forward and someday a cure will be found. Until then, my job (and my doctors), is to help me survive until that day. My goal, with each and every thing I do (including any treatment, surgery, procedure, etc..) is to buy me time. Each extra day that I can buy keeps me going as some VERY smart people out there continue their work to finding me a cure. So far I have undergone the original surgery to remove the cancerous growth in my Colon, an original 6 month round of chemotherapy, radiation along with chemotherapy for 3 months directed at the Colon to try to assure no recurrence of the cancer in that area, three separate surgeries to remove cancerous growths on my lungs, and currently...another "dance" with chemotherapy. The results of all of this are that, at present, the Colon looks good but there remain numerous spots on my lungs (5 that are large enough to be seen via scans and likely many more that are simply too small for currently available technology to pick up). This has been the case all along...small spots on my lungs would be detected, we'd take steps to get rid of them, only to then have new spots grow large enough to be seen on scans, and the process would repeat. My Oncologist has been straight forward and honest with me since day one. He tells me each time we have a measure of success to temper it a bit with the understanding that there is little to no possibility that whatever the treatment was would be curative. He reminds me that in all likelihood the absence of anything "seen" is not a result of there truly being nothing there and more likely a result of things just being too small for our current technology to pick up.
So, at present, we know that there is still cancer there (some seen and likely more too small at present to detect). We also know that I have lost all of the healthy lung tissue that I can afford to lose. My current symptoms, shortness of breath, needing to utilize and oxygen machine when I sleep at night, lack of energy, stamina difficulties, etc..are all a result of the loss of healthy lung tissue as a necessary side effect of the various treatments undergone to keep the Cancer at bay. At this point any further loss of lung tissue would lead to permanent, chronic problems destined to effect my quality of life. Given this our treatment options are now very limited. I have been referred to a specialist to discuss targeted radiation however, I have been deemed to be a poor candidate for this procedure as it would result in further loss of health lung tissue. The same is the case for standard radiation AND further surgery. Any of these procedures would leave me with too limited lung function to make them valid treatment considerations. And so we are left with onhe option only...Chemotherapy. Unfortunately the side effects of chemotherapy are well documented in general, as well as by me here on this website. Unfortunately, this is our ONLY current treatment option...fortunately, we have seen some measure of limited success with this round of treatment. By success I mean that the currently SEEN tumors seem to be responding favorably to the treatment. Again, this does NOT indicate a cure but it does indicate that what we can currently see is looking a bit better AND it seems to be working to buy me more time (which you may recall is really the goal of any current treatment). I find this news to be a real mixed blessing. Obviously the good news is that the chemotherapy is doing what we hoped it would and it IS working to buy me time. For this I am ecstatic and VERY grateful and happy. HOWEVER...its success means its continuation, and this is the "bad" news. Continuing indefinitely with the treatment means a continuation indefinitely of the side effects. These can be VERY difficult and trying. I have outlined the side effects of chemotherapy here previously so I wont go in to too much detail here again, other than to simply list off the EXTREME fatigue/loss of energy (highlighted by literally sleeping through about a 3 day time period from the day of infusion on. During this timeframe it is not at all uncommon for me to stay in bed for up to 20-22 hours/day rising ONLY to grab a bite to eat/use the bathroom. Otherwise I am simply too exhausted to rise. This period is typically followed by 3-4 days of intense nausea/vomiting. Obviously this can be quite overwhelming at times. Finally, about a week after each infusion I finally begin to rise and slowly get back to myself. During this period however, my body has become so weak from everything that it is all I can do simply to get up, move out to our living room and spend a day or to basically sitting up, watching television, and socializing with the family. Slowly, I get my strength back and can begin to get up and get out a bit more. Finally...after all of this i am typically left with about 2-3 days where I am back to being me. I feel good and can get out with the kids and Tara and function as a "normal" person. And then, before I know it...BAM...two weeks are up and I'm due back at Mass General for my next infusion and restart the whole process. This is a typical cycle for me. This is the general schedule of things, but it is only a template...it doesn't take into account the smaller details like the horrible effects the chemo has on my stomach. The diarrhea/constipation cycle, the HORRIBLE mouth sores and burning I get from eating most anything...the loss of my taste buds and complete inability to enjoy eating anything as nothing has ANY taste to it, the on going breathing difficulties only made worse by the weakness throughout the period...the difficulties in walking anywhere due to muscle loss from spending so much time laying down...the terrible effect the chemo has on my skin which is covered in sores, scars, and other unrecognizable spots...the effect on my voice which is almost constantly weak and shaky (a side effect of the chemo), neuropathy, which is the painful effects the chemotherapy has on the nerves in your fingers and toes. This side effect is one of the few that are permanent and will continue to worsen and not get better even after ending chemotherapy. At it's worst I cannot touch anything cold (out of the fridge for example) without it feeling like someone is lighting my fingers on fire, or the same feeling in my toes just from walking outside on a very cold day,etc...And the kicker is...the longer I am on chemotherapy the worse things get. Chemotherapy includes a cumulative effect. While the drugs are generally cleared from your system, they are done so slowly and incompletely. Some of the effects are cumulative and worsen the longer you are on them.
Now...PLEASE don't get me wrong...YES, it IS terrible and it is a real source of suffering, it IS helping me and SO FAR, it is worth it. Knowing that it is having a positive effect on the Cancer makes it a whole lot easier to take and it is this thought that gets me through the long/hard days and nights of suffering. It is my way of buying me more time. As long as it is doing something positive I will bear it and continue to bear it knowing that it is getting me closer to a day when a cure is available. Additionally, I am driven on by the AMAZING support I get from Tara and my girls. They continue to be my rock. They understand what I am going through, know the routine, and are there for me 100%. There is simply NO WAY I could do this without them. NO WAY, and for that I am eternally grateful. In many ways it is harder on them than it is on me and I know that.
OK...enough on the suffering and on to the happiness. Given the success of the chemo, it looks like I am in for the long haul. I can continue on with chemo until either it stops working, the side effects become dangerous (worsening of the neuropathy which leads to permanent nerve damage in the hands and feet), or I decide that it is not worth the suffering and it effects my quality of life so much that I decide it not worth it. This last possibility is simply NOT an option. I will NOT give up. I have far too many people pulling for me and keeping me going. I have the love of my wife, daughters, and way too many other people to keep me going regardless of how I am feeling. So, it looks like I'm in it until I can no longer be in it. That being said, I WAS told that I can take breaks if/when I feel they are needed. I have been reluctant to do so. Despite how I feel I find it so hard, knowing that it is doing something positive and the Cancer is being affected, to then turn around and take a break. I know it's untrue but I see it as taking a break will allow the cancer to grab a foothold and start back regrowing again (even though the reality is that is is likely still growing anyways just MUCH slower). I understand it is unrealistic but that how I feel. Until now....I would be lying if I said that it doesn't all get to me from time to time and recently has been one of those times. This last infusion has been a particularly difficult one with a noticeable increase in the cumulative nature of the process. So....at the suggestion of Tara, and the financial assistance of my parents, I have decided to take a break and will fly down to Florida the last week of March to visit my parents. Tara has noticed my recent struggles and really felt like I could use a break and my parents, true to form, were right there to jump in and offer to pay for my flight down. I am VERY much looking forward to it. I have been able to arrange it so that I will miss only ONE infusion and be back in time to pick right back up. The way I've been able to schedule it is to have my next infusion on March 5, spend the following 3 weeks "recovering" to a point where I should be feeling like myself for the trip, fly out the 24 of March, return on April 1, and be ready to show up at MGH for my next regular infusion, well rested and strong that Wednesday. I am so thankful to Tara and my parents for helping me to make this decision and to be able to afford to do it (physically and financially). To top it all off, I am awaiting word back from my brother Neil who is currently considering the possibility of joining me, which would truly be the icing on the cake.
As for other good news, NOT including me for once...I simply could not be happier or more proud to let you all know that my oldest daughter Abby has heard back from each of the 4 colleges to whom she applied for next year and has been accepted to EACH one. Now the difficult part...THE DECISION. will keep you all posted as she makes up her mind. As any of you who are parents can understand, I find this whole process VERY difficult. I am SO happy that she has gotten in to these schools and proud of her for deciding to continue her education and she is set on this decision. This is truly all you can ask of your child as they finish up their high school career and shows some modicum of successful parenting that your child has reached a milestone such as this. HOWEVER, I will miss her SO much. It makes me so sad just thinking about her not being around day to day next year. Of anyone, I think I feel worst for Ally (our youngest), as she's gonna have to become the daily focus of ALL of my attention. Oh well, looks like she'll just have to adjust. Speaking of Abby, she just returned from a trip to Florida of her own. She went down during school vacation to visit her boyfriend, Robbie. She just returned today and happily, she enjoyed herself immensely.
As for Ally, she spent her vacation exactly the way she wanted to.....she did NOTHING. She works so hard in school, and is involved in so many extracurricular activities that too her, a vacation of "nothingness" was just what the doctor ordered. And, as for Tara...what can I say?...I am married to the most amazing person in the world. What she deals with/.has dealt with, on a daily basis would test the patience of the Pope, yet she continues to keep us all moving along. There are no words to describe my feelings of gratitude, caring, and love for her. She is truly the strongest person I know.
And so we move forward struggles in tow. Our current focus is back on (who am I kidding, it never really deviated from...) money. The end of the school year is in site. This being Abby's senior year comes with lots of exciting experiences (prom, graduation, etc..), that unfortunately, all cost money. In addition, with the changes, addition, worsening of the numerous side effects of my treatment listed above, the doctors are VERY good and proactive in their attempts at alleviating some of my suffering. I am grateful to them for this, however most of their attempts to do so include the use of new, or changes to existing, medications. While some are helpful, and some not so, the one common factor is that they all cost money. One of the positives of all of the ongoing cancer research is the creation of all types of new medications meant either to directly treat the cancer OR to treat the side effects. Unfortunately (thanks large drug companies), new medications typically have two things in common...first of all they are quite expensive, and secondly, they are typically "non-formulary" and therefore not paid for by insurance companies (particularly medicare/medicaid)...and so the options are to refuse the meds and suffer, wait long periods and "roll the dice" that it is approved at some point...or the option that we have been forced to chose...simply pay for them out of pocket. At current count I am up to 16 "daily" medications (obviously not all are paid for out of pocket), and countless others to be used as needed and not on a "regular" basis. Unfortunately these meds are all refilled monthly and so have simply become another "monthly bill" that we had not considered into our initial budgeting. Finally, with the end of the school year approaching fast we are also preparing ourselves (or trying) for the upcoming summer months which always are more expensive than during the school year as the girls have more free time on their hands. This summer in particular means preparing to send Abby of to college and the huge expenses associated with that endeavor. Supplies, books, clothes, travel to and from, etc., are going to challenge us greatly. BUT...we remain as resilient as ever, and have proven over and over that we have the ability to do anything we set our minds to. Will it be a challenge? HELL YES!!!! but let's face it, we've been confronted with greater challenges than this and we are still here fighting away....thanks to a united front, a great family, and AMAZING friends.
And on we trudge, aware of the great obstacles in front of us, but armed with love, support, positive thinking, and an open mind. After all is said and done, I remain grateful for all that I have and am reminded daily of how fortunate and lucky we are. There are plenty of folks out there a lot worse off than we are (despite the fact that at times it is hard to remember this, it remains true). So I would like to end this update by thanking each and every one of you taking the time to read this. Your support emotionally, financially, physically, spiritually, etc..are a HUGE part of why I still here and still plugging away. We can never thank you all appropriately. Just taking the time to read this blog entry shows us just how many people are supporting us, and if so many are out there supporting us...how can we give up? Thank you all and God bless you.
Once again I would like to apologize and ask your forgiveness for any typos, spelling errors, or phrases that seem to make no sense. I continue to type these updates on my cell phone as we have VERY limited access to an actual computer (we have one laptop and two teenage girls in high school). I am lucky to even see the computer never mind get a chance to use it. I have determined that cellphone keypads are made for very little people with very little fingers and I am neither little nor have little fingers. So, I make do the best I can and ask for your forgiveness. Thanks!
January 29, 2014
First and foremost I hope you all enjoyed the Holiday season and that 2014 has gotten off to a great start. As for us...well lets just say its been remarkably similar to 2013, full of mixed emotions, mixed success, mixed failure, but overall a continued desire, willingness, and ability to fight on against this dreadful disease.
To bring you up to date, you may recall from previous updates that I am back for the second "go 'round" with Chemotherapy. Currently all presence of the original Colon Cancer seems to have taken hold in my lungs. Despite 3 "successful" surgeries to remove metasteses in my lungs (the last one resulting in the removal of a complete lobe of my right lung), there is still evidence of cancer as defined by at least 5 cancerous nodules still seen on CT scan spread out in both lungs. Unfortunately, given the effects of the surgeries (breathing difficulties mainly), surgery is no longer considered a viable option. Similarly, you may recall that I was referred to a specialist to discuss the possibility of targeted radiation. Again however, given the current state of lung functioning, I have been deemed ineligible for this treatment as well, as apparently the possible gains are outweighed significantly by the possible long term negative effects. And so, we are basically left with chemotherapy as the only CURRENT treatment modality. My current regimen is outpatient infusions every 2 weeks. Every other Wednesday I go to MGH for bloodwork first, to make sure that the possible side effects are not prohibitive for continued treatment. About an hour after the blood draw I see my oncologist to discuss any issues and to get the results of the bloodwork. Assuming that all is going well, the orders are written for the chemo drugs. I then head over to the infusion unit where I spend about 3 hours or so being infused with 3 different chemo drugs, and a few other IV drugs to hopefully help with nausea and other potential side effects. Finally, once infused I am hooked up, through a power port pump which has been surgically placed in my chest, and given another 2 days worth of a Chemo drug to "take home" with me to be infused slowly over the next 48 hours. Upon completion, I have been taught to de-access the pump from my chest and there you have it, I'm done for another 2 weeks. The side effects for me are basically extreme fatigue (lasting the first 4-5 days), severe nausea/vomiting (lasting about the entire first week or so), and neuropathy in my hands and feet. This last effect is the one we really need to watch for as it is NOT, like the others, a short term effect and likely will ultimately be the reason for ending this chemotherapy regimen at some point. Neuropathy is a chronic side effect that will NOT get better and WILL continue to get worse with the cumulative doses of these particular drugs. When we reach the point where the additional neuropathy is no longer tolerable we will likely attempt to switch drugs and try other chemo options (more about this to follow). This is unfortunate given the current efficacy of this current drug combination.
And that brings us to the current results of all of these poisons being pumped through my system....you may recall that 2+ years ago was my first experience with chemotherapy. That experience provided mixed results. It was a six month cycle at the time. During that period, the chemo was successful in keeping the tumor growth at bay. It did NOT shrink any of the tumors but it DID keep them from growing. Basically the tumors were exactly the same size post the six month cycle as they were when we began. While helpful, it didn't do enough at the time to dissuade us from moving on to radiation and ultimately the surgeries. So, we were only cautiously optimistic for much greater success with the same medications this time around. Out first positive results with this current cycle came about a month ago when for the first time since diagnosis, there was a positive result from the bloodwork. A fairly reliable "tumor marker" (called CEA which measures the amount of a Colon Cancer Antigen in your blood), decreased slightly for the first time. On a subsequent blood draw it decreased yet again. Both very positive signs that at the least, the chemotherapy was doing something...finally, last week it was time for the next round of CT scans. Lo and behold the current scans showed the first actual DECREASE in tumor size. Granted the decrease was literally microscopic (approximately 4 TENTHS of a centimeter) but of the 5 current tumors there has been similar shrinkage in 3 while the remaining 2 stayed exactly the same size. Now to put this all in perspective...this is still stage 4 Cancer and there is virtually NO chance that this chemo treatment will be curative...it is OBVIOUSLY good news and marks the first actual effective treatment (not counting the surgeries) that I've undergone. It still will not cure me nor will it lead to a period of "remission". The cancer is just too virulent and has spread too much for that to be the case. HOWEVER...what it does do, is it buys me more time. At this point, that is the best case scenario and seems to be what is occurring. And....I'm ok with that. I have long ago come to terms with the nature of my diagnosis. I know that AT SOME POINT, it is inevitable that we reach a point where the cancer "wins"...BUT...each successful treatment/procedure will buy me more time. My greatest hope/wish/prayer is to buy me enough time for technology-research to catch up and an actual CURE will be found. We are not yet there (despite a whole lot of people a whole lot smarter than I continue to work at it every second of every day), but this recent news of my tumors shrinking (despite it being very small), certainly qualifies for a success and further qualifies as buying me more time. More good news is that the tumors are still quite small. My Oncologist tells me that even if they began to re-grow immediately, it would still take quite some time before they reached a point of doing irreparable damage. And so I still consider myself quite blessed. Blessed to have family and friends who care enough about me to read this website, call to check in, and provide support whether physically, emotionally, financially, or any other means. This continues to be a battle I just cannot fight alone. Your assistance today remains as invaluable as it was 3 years ago when first diagnosed. I continue to read/hear the stories of others fighting the same fight, and I continue to feel amazed and blessed, and for that I will be eternally in your debt.
On another positive note...I cannot be more happy, excited, and proud to inform you that our oldest daughter Abby has been accepted to the communications department of Worcester State University for the fall semester. It is the first feedback she has received since completing her application process. Happily it is one of her top choices in programs to attend. It is Abby's desire to study communications difficulties (specifically speech pathologies) in children, and apparently Worcester State has a nationally renowned reputation in this field of study. Congratulations Ab....I truly couldn't be more proud of you. I will update you all as the process continues to unfold but so far....so good.
And not to be outdone of course...Ally has been chosen (after the tryout process) to be a part of her high school's A Capella group. It is something she enjoys and was hopeful that she would make the cut. So good news all around!!!!!
As for me...well it's chemo,
Chemo, chemo. I continue to follow doctor's orders, and simply grin and bear it as the saying goes. We have learned to accept the "schedule" involved with chemotherapy and have adjusted life to fit within the necessary parameters. I am still plagued by the side effects and understand that a day of infusion (every other Wednesday) will be followed by 3-4 days of near complete exhaustion, followed by a couple of days of nausea and vomiting. Then, FINALLY, a day or two of feeling a bit more energetic. After this struggle I Finally start to feel "human" again, before I can really start to put the infusion behind me and realize that the next infusion will soon be upon us. And as long as there are no unexpected/unforeseen "hiccups", we are all set and good to move ahead the following Wednesday. All in all, that becomes our Modus Operandi, as well as our coping technique and how we face life. According to the Oncologist, we will simply continue to follow this path until either things take a turn for the worse OR until I feel like I (or my body) tells me that it needs a break. Apparently there should be no real reason to make any changes. The likely cause for such change will likely come from a worsening of the neuropathy. Neuropathy is a result of the chemo leading to the killing of otherwise healthy nerves in my hands/feet (more specifically fingers/toes) defined by a burning sensation that can/will worsen cumulatively over time with each successive infusion. When it becomes intolerable...I am told to pay attention to this change and to be aware of the need to take such a break, as any such change will become permanent and will NOT revert back to any lessening of symptomology. Once the neuropathy is present, it's here to stay. So we will continue on with our vigilance in making sure that we are well aware of how I'm feeling, and take a break when necessary. Until then...we push ahead onwards and upwards filled with the knowledge of what to watch for.
And finally....we continue with our battle and continue to count our blessings that we are supported by the best group of family and friends that one could ever wish for. We thank you all...for who you are and what you mean to us. I will update you all again with changes, either in results to tests, side effects, etc...but will do our best to keep you as up to date as possible. Until then we simply say that we love you all and are forever grateful for EVERYTHING you have done to help us fight the good fight.
Ups and downs...good news and bad news...happy times and struggles...I guess Cancer or not, such is life. Yet for some reason, when dealing with Cancer, the highs seem higher and the lows, lower. Such has been the story of the past month.
In my last update, you may recall, I was somewhat giddy over having had my second infusion and at the time of the writing, usually according to the expectations of previous infusions, I had expected to be feeling quite ill when in fact, the opposite was true. I was so happy that 4 days post infusion I was full of energy, feeling well, and believing that we had finally found the perfect medication regimen to allay some of the suffering. Then...BOOM...a few days after that update all of the nausea, vomiting, and fatigue burst upon me. Apparently, for reasons that I still don't understand, the "usual" negative reaction to the infusion was delayed this round and I found myself feeling just as ill as usual only a few days later than expected. Since then, it's been a month of ups and downs. As for the ups...November 27 was Tara's birthday. Unfortunately it coincided with my next (and most recent) infusion and Poor Tara had to spend her birthday caring for me after a day at the hospital being infused and then that night having returned home feeling the usual ill effects. We DID manage however to enjoy a nice dinner and cake in her honor gratefully and proudly provided by Abby on "pick up duty" for us. The girls did a wonderful job of getting Tara some nice gifts and assuring that a few smiles crossed her lips on her special day.
We were further delighted to have had the opportunity to all celebrate Thanksgiving together. Occurring the following day, we decided not to let how I was feeling determine our day so we decided to plan, and keep the day very low key and casual. It was a lovely day with Tara, the girls, and my mother-in-law, Dianne, who lent her time tested expertise in putting together an excellent meal, alongside a lot of hard work on Tara's end. While limited greatly by my lack of appetite/nausea, I still managed to eat more than I should have and spent the rest of the day attached to my chemo pump, lounging in my chair, stuffed, watching football, and enjoying the company of those funny, beautiful women. It was truly a day to give thanks. I had nice conversations with my brothers and my parents and was thrilled that everyone seemed to enjoy this amazing holiday. Ah, the "ups"...when lookin through the lens of possibilities, the "ups" are truly special. Finally, for good news, we were able to enjoy watching our youngest, Ally, as she performed in her school play. This year was Fiddler on The Roof. It's one of my favorites to begin with, and seeing Ally up there on stage singing her heart out was truly a joy.
And "the downs"...I guess I've learned that to truly appreciate the good there has to be bad. Without it for comparison how would we know what to really behold as good?
This month was full of good, that's for certain, but it certainly had its share of bad as well. I guess first on the list has to be health. A day or two prior to my most recent infusion, I came down with what I believe was just a simple cold. Unfortunately however, when your immune system is compromised by the chemotherapy there is no such thing as a simple cold. I met with my oncologist, as is the norm, on the day of my scheduled infusion and the bloodwork, physical exam looked ok to move forward so we decided to move ahead with the infusion. In hindsight, I think perhaps we should have postponed it for a few days, but as they say...hindsight is 20/20. My "cold" turned into heavy chest congestion and my lungs are just not strong enough yet to handle this amount of congestion. Breathing became very difficult and uncomfortable, sleeping was a nightmare, as lying down only exacerbated the congestion, and the usual misery following the infusion became close to unbearable. It turned out to be a very difficult couple of weeks and is just NOW finally clearing out and starting to feel better. Of course this comes just in time to face my next infusion in 3 days.
And then tragedy hit....anyone who REALLY knows us knows that we are not a family of 4. For the past 10+ years we have been a family of 5 thanks to our adoption of little boy, Jake. Jake is our boxer/put bull mix and has been the love of our lives since our girls were quite young. I would often remind people that in a house with 3 females and myself, I thought of my Jakie as my only son. He truly was a man's best friend....mine. Jake played a central roll in our lives and in turn made us the central roll in his. Jake had to be put to rest last week. He lived to be well into his 90's and as an adoption, we take solace in knowing that we provided him a nice, happy, loved life. His loss is a HUGE blow to our entire family and it will take us time to come to terms with his passing. We LOVE you little man and we miss you so much.
So there you have it. A month of contrast...good and bad...happiness and heartache...LIFE. And it looks likely to continue the pattern as next Friday (13th), I (and my brother Larry) will celebrate my 46th birthday. At this point, every birthday becomes a bit more special (for obvious reasons)...yet this year's celebration will likely be much muted as I will still be hooked up to my pump and be receiving my chemo infusion. Good and bad!
So that's about it for the update. It's been a busy month and this month looks to be just as busy. I would like to take the opportunity to wish everyone a VERY happy and healthy holiday season and a wonderful new year. May 2014 bring all of your dreams to light. As we close out 2013, I would like to thank each and every one of you for donating the finances that allowed us to make it through the year with a roof over our heads and food on our table. We would NOT have made it without your help!!!!! Every little bit helps and every little bit goes DIRECTLY to paying our bills. I would also like to thank you all who provided equally precious support simply by being there for us for moral support, guidance, prayer, or simply for caring enough to read this website and keep up to date with our struggles. That act, in and of itself, shows us how much you care and that knowledge helps us cope and push forward each and every day. Thank you all!
Well it's been just about a month since my last update and figured it was high time to do so. Thankfully, I am overwhelmed and grateful to realize that perhaps an update is overdue when I start to get phone calls and emails from lots of friends and family members "checking in" on me to see where things are. These contacts are incredible reminders of just how lucky we are to have so many love ones caring about us. So, as has been my custom, it becomes so much easier and less time consuming to update the website rather than typing the same information MANY MANY times over. That being said, here's the latest....
After determining that targeted radiation was a "no go" (given the number of spots on my lungs and the questionable make up of whatever it is seen on my right shoulder bone), we decided that it was time to turn back to another round of chemotherapy. Despite all of the terrible memories, trials and tribulations of the first round of chemo, we were advised by the oncologist that this really represented out best current option. With that in mind we pushed forward rather quickly and on October 30 I began round 2 of chemo with the first infusion. You may recall (or more likely not..) that chemo, in my case, involves starting the day in the infusion unit at MGH where a chemo nurse accesses the power port implanted in my chest. Once accessed the line is used to draw labs and check vitals. From there it's downstairs and waiting until the labwork results come in. The next step is an apt with the Oncologist to review the results and use them to determine the appropriate chemo regiment to be used that day (and also to even decide whether or not the results make it necessary to cancel the treatment which did occur twice during the previous round of chemo about 2 years ago). Once that apt ends, and assuming that we are cleared to proceed, it's back up to the infusion unit. Once there my central line is hooked up to IV and I am premedicated with a "cocktail" of IV and oral meds to best prepare my body for the mixture of poisons (actual chemo drugs) about to pour into my body. Next, the first bag of chemo goes in. This first drug infuses over the next 20 or so minutes. Once complete I am hooked up to 2 more bags of different chemo drugs that can be infused together. These drugs take about 2 1/2 hours to run empty. Once drained, I am ready for the final "in patient" chemo drug to be "pushed". This is basically a large, plastic syringe PRE-filled that the nurse pushes through the IV line over a period of about 5 minutes a bit at a time. And then, at last, the nurse attaches another large PRE-filled syringe to a computerized pump, both of which get housed in what looks like and oversized fanny pack that has a strap to wear over the shoulder. This contraption is then run with IV tubing into the port imbedded in my chest and I am finally ready to go home. The whole process takes about 8 hours and off I go, fanny pack and all, on my way home. From there it's 46 hours attached to my fanny pack where about 2 days later, after toting this pump full of crap around with me everywhere I go, I have been taught how to turn it all off, unhook the empty syringe and pump, clean and flush the IV line, and finally disconnect the tubing from my chest port (all if which has to be done in as sterile a way as possible). Believe it or not, once disconnected the tubing et al, gets treated as hazardous waste and the empty syringe, pump, etc. gets placed back in the fanny pack and I am given a PRE-addressed FedEx box to simply mail it all back to MGH. Historically speaking, I will typically feel "ok" until the day of disconnect. Typically, at that point my body is beginning to process the totality of the poisons and its then shortly after "unhooking" that I start to really feel the full effects. The nausea, vomiting, fatigue, and any other number of horrible effects start to creep in. This usually lasts for about another 4-5 days of just complete misery. And then, slowly I will start to feel better and back to myself for a few days until two weeks after the infusion...you guessed it....it's time for the next round. I go every other week, usually on Wednesdays.
And so it restarts. The plan for now is to endure 4 such infusions over the next 2 months. After that we will redo CT scans to try to determine any changes in the activity if the cancer. Obviously the best scenario would call for a reduction in the size/activity of the cancerous growths. Any such results would mean that the chemo is successfully targeting the cancer. Based on these results, further treatment decisions can then be made. The options at that point would be to end chemo (in the extremely unlikely case of the chemo having killed off all of the cancer. Based upon the first round of chemo from 2 years ago we know this to be virtually impossible but hey...positive thinking right). The next best option would be for the cancer to remain stable in size, amount, and activity. This was similar to the results last time around. In this case it would mean that while not "killing off" the cancer, the chemo would at least be holding it at bay and continuing to buy us more time. Theoretically, this could allow us to continue on with chemo virtually forever until something changes. And finally, should the results show that the chemo is ineffective and the cancer is continuing to grow and spread despite the chemo, we would then need to look at the possibility of any other chemo options available including changes to the drugs being used and any possibilities of experimental treatments. BUT...we are far from there. So far it's been 2 infusions with 2 more to go and then the first scan. It's a start. The overall length of chemo treatment this round will depend upon all of this. The first round was 6 months and this time...who knows. We are takin it one infusion and one test at a time.
In a positive note...the first infusion of this round (on Oct 30), quickly brought back reminders of just how shitty the chemo makes me feel. I spent the first week virtually bed ridden, nauseas, vomiting, and unable to garner the strength to raise my head off of my pillow. I felt physically woefully unprepared to cope with the treatment and emotionally drained at the thought of another long battle. HOWEVER...after consulting with my doctors and gathering more appropriate "tools" (ie prescriptions and a better medication management plan), I underwent infusion number two this past Wednesday, and am so VERY thrilled to report feeling MUCH better than at this point in any other infusion schedule to date (including any infusion during the first round). Typically by day 3-4 post infusion I would be bed ridden. But I can honestly report that I spent today upright, relaxing at home with my girls, taking in nutrition and even made it out to see the movie Gravity playing at the nearby theater. The nausea is well controlled and the fatigue bearable. I do not profess to understand the reason for feeling so well but I am also loathe to look a gift horse in the mouth. I am just enjoying it while it lasts and am praying that it is a positive sign of things to come. We will see and I will keep you all posted but I am thrilled that it is so.
Ok so enough about the medical updates and on to the more important "stuff"...life.
Please forgive a father's pride and allow me the opportunity to gloat for a moment. Report cards have come out and I could not be more proud of my girls. How they both manage to do what they do, under this horrible curveball they have been thrown is far beyond my understanding and pride. Ally continues on with her usual straight A grades while she works hard in her role in the upcoming school play, Fiddler on The Roof. Where she gets her beautiful voice is unknown to us buy wow can that girl sing. And Abby...aside from making the honor role, is in the midst of college applications while continuing on with her job after school in a private child after school program AND has recently picked up another PT job selling Pandora jewelry at a local jewelers. Her work ethic, morals, and overall personality literally brighten up any room she is in. In these two cases a fathers pride could truly know no bounds. I am a lucky lucky man. And as for my Tara...battling cancer as a family is far from a one man job. To keep up a successful fight AND to continue to raise happy, healthy kids can only be done as a family unit. It has become painfully obvious that alone I am useless in holding up even my own end of the bargain. Whoever said that marriage is a 50-50 proposal couldn't be more incorrect. While it MAY actually average out that way, there are far too many times where it has to be 100-0 for long stretches. Tara has shown time and time again that she has carried my sick ass through whatever Hell presents itself to us and does so with nary a complaint, harsh word, and without a grudge towards myself, the kids, the doctors, or God. She just DOES it. Whatever is required, she just DOES it. I don't know how or what gives her the strength. Her own medical issues would seem to make it physically impossible for her. I know she is in pain. Physically, mentally, emotionally, etc ..she is hurting but she carries on for all of us and makes us all better and stronger for it. She is truly the glue that binds us together. And for that I will ALWAYS love her and be in her debt.
Lastly I want to leave you all with this note and an apology. In a true effort to alleviate some of out suffering (financially speaking)...many of you may have noticed my brother Neil doing EVERYTHING in his power to make it as easy for people as possible to continue to donate to the Band Together For Gary Fund (this can be done on this website www.bandtogetherforgary.com) he has made arrangements through Cambridge Savings Bank to allow for deposits either directly through mail ins to the bank, PayPal deposits, bank transfers, automatic deposits, etc. while we are, and will be forever grateful to Neil, the bank, and all of you who have continued to provide us this incredible and much needed assistance, we have hit a temporary snag in the system. Unfortunately, along with the increased means of being able to donate comes an equal amount of means of the bank providing us with the information. It has recently come to my attention that there have been a few donations that have been processed appropriately but the identifying information was not forwarded to us. Please don't misunderstand, the donations did in fact get into the fund account appropriately. The problem is that I am not sure exactly who sent them. This makes me feel terrible. I know that it is the thought that counts and I appreciate each and every donation but I would truly love to be able to thank people individually. So PLEASE PLEASE PLEASE if you have recently donated but have yet to receive a thank you, I beg of you to understand that unfortunately it is possible that your donation was one of these that was not appropriately identified to us. We are continuing to work with the bank to assure that this issue gets straightened out ASAP. Again please rest assured that the funds did get to us and the money was not lost. Rather the name that goes along with the donation is what was missed. If you fall into this category of having donated your hard earned money but have yet to receive a thank you...AND only if you feel comfortable in letting me know, please send me a message to let me know as we would love to acknowledge your generosity. If you would rather keep your donation anonymous and not respond back then I understand that as well but please know how much each donation means to us. At this point all I can do us apologize and thank you each from the bottom of our hearts
And to let you know that we will keep working with the bank to resolve this issue. It has been these donations that have continued to feed and shelter us. It's been these funds that assure our transportation to And from my apts and treatments. It has been these donations that allowed us to take Abby to go look at a few colleges in her effort to determine possible fits for her move on to college next year. Without your generosity I truly don't know what would happen to us but I DO know our daily struggles to live would be unbearable at best and impossible at worst. We are and forever will be, in your debt and gratitude and for that Tara, Abby, Ally and I can only thank you from the bottom of our hearts. With your continued assistance financially, emotionally, physically, spiritually, etc through donations, support, guidance, prayer, advice, etc... We will continue on in the battle. We will remain MeStrong (to quote from Linda Ryan and her gang), and we WILL beat this!!
Please check back periodically as I will continue to update folks here with all of the the results and changes sure to come along quickly now that we are back on chemo.
October 17, 2013
Ok, so targeted radiation is a definite "no go" due to there being too many spots on the lungs AND the new spot in the shoulder bone. So yesterday I went back to my Oncologist to try to figure out the next step.
Apparently this spot in the shoulder was explained to me as being like a large plate of glass with a small imperfection. Despite the rest of the plate holding firm, at any time this structural imperfection could cause the entire plate to shatter. The lesion in my shoulder, while not currently causing me much trouble could theoretically lead to a break at any time. So, given this, my Oncologist feels like we have to take a proactive approach and try to deal with it before it causes more problems. In addition the longer we hold off on dealing with the lung spots the greater the risk of them growing or spreading. Given my already diminished lung capacity he is concerned that at some point it will start to effect the airways in my lungs or I could end up with a buildup of fluid in the lungs as well. So...options:
We could move forward with radiation for the shoulder to try to take care of that situation first and then consider another round of chemo to treat the lung spots, OR we could just jump into the chemo and deal with the Lung spots AND hope that the chemo is effective on the shoulder bone as well. This latter approach COULD eradicate the need for radiation altogether. In talking it over, the Doc feels like we can always do radiation at any time if needed, but if we start with another round of chemo AND if its successful, we may not need the radiation.
However first thing's first, and that means a possible MRI on the shoulder to get a better understanding of what's going on in the bone. Unfortunately, his order for the MRI was initially denied by insurance (apparently they feel it wouldn't yield helpful information). But, he is trying to get it approved. So...IF it gets approved the MRI will be scheduled for next week followed by a follow up with oncology to "nail down" the sequence of treatments. If not approved then I will see oncology in 2 weeks to start chemotherapy. Chemo will be about 6 months in all likelihood. Similar to my last go round with chemo, it'll be 4 rounds of chemo followed by CT scan and repeat. The overall length of the process will depend upon how well it seems to be working and (based upon my last chemo process) how sick I am, but 6 months will be the target.
Not quite sure how I feel about another round of chemotherapy. The first stab at it was very unpleasant and I was very sick. You may recall it had a horrible effect upon my liver and I battled a multitude of problems related to the chemo's side effects. And, the results were mixed. While true the lung spots did not grow while I underwent the process, they didn't shrink at all either. This was the main reason my oncologist has been reluctant to go back to chemo as a treatment for me. He has felt strongly that unless absolutely necessary, putting me through chemo again was not worth the negative side effects. However, realistically it is presently the ONLY option that we really have at this point. Unfortunately, we were also optimistic (back then) that perhaps there would be either new, approved chemotherapy drugs, or new experimental drugs available before i would need to face chemo again. This is simply just not the case. Apparently there are 2 "possible" clinical trials underway for Colon Cancer drugs, but given my "type" of cancer (based upon pathology reports arising from samples obtained during my surgeries) I am not a suitable candidate for either at present. With further surgery out of the question, and targeted radiation also not an option, we are limited in treatment options. And so...bring it on. I WILL get through it regardless of the struggle and I WILL battle on. I promised my family and friends, at the beginning of this whole thing that I would give it all I have and refuse to give up. If that means another 6 months of chemo then so be it. I hope and pray that this round goes a bit smoother than last time and is more successful, but whether it is or it isn't, I will fight on and get through it. I only hope for Tara and the girl's sakes that it does go smoother. I dread the thought of having to put them through having to see me and cope with me during this. It is for them that I worry. That being said, they continue to amaze me with their strength and I know they will get through it regardless. We will get through it the same way we've gotten through everything....TOGETHER! I would really just like to give them a break and make things as easy for them as possible.
And there it is...that's the update. On a truly positive note, thanks to my brother Larry (for the tix), I was able to have an awesome time last Sunday attending the Patriot's game with Larry, Mike, and Stu (my 2 oldest, best buddies from elementary school until today). We try to get together a couple of times a year and this was a great opportunity to get "the gang" together. Of course it didn't hurt that the game was amazing and the Pats pulled out the win with 5 seconds to go.
In addition, I am incredibly proud and excited to take Abby to visit Worcester State (a fairly local college in central Mass.) for their open house this weekend. Tara and Ally won't be able to join us as Ally will be sitting for her PSAT's this weekend, BUT, we will be joined instead by my older brother Neil, his wife, Doreen, and daughter, Andrea who is also a HS senior and looking at the same school. So...it's a win all around and I am very much looking forward to making this trip with Abby as she continues to give thought as to where she would like to go to college next year. I am SO proud of both of my girls.
And so I will leave it here for now, and will plan to update you all again over the next couple of weeks to let you know how things proceed.
I would also like to thank you all again for all of the donations, thoughts, and prayers. Even something as seemingly easy as being able to afford the drives to various Massachusetts' colleges would be a huge struggle for us without your continued assistance. We have learned to live month to month within our budget, but anything above and beyond the "expected" expenditures (rent, utilities, food, etc) such as college visits, application costs, etc...that pop up, acreate huge issues for us. Thankfully, your incredible support is what allows us to be able to provide the girls with these types of things. On that note, while obviously impossible to list every single person who has been generous enough to help us throughout this battle, I would be remiss to not mention Linda Ryan and her "posse" at MeStrong. You may recall that it was MeStrong that sponsored the 5 K race that I participated in recently. Well the folks at MeStrong were extremely generous in awarding us a grant from the proceeds of that race. They are an incredible, strong group of women who have been there for me from early on. For more information about Linda and "gang" you can visit them at MeStrong.net. Thank you to them and all of you. Anyone who knows me (well I guess that if you're reading this you must know me, oh well...) knows that I am not known for my succinct and brief style of writing...BUT...I will keep this update brief as I just want to update folks relative to my PET scan results and subsequent appointment with the Radiational Oncologist.
Unfortunately the PET scan results showed approximately 5 spots of concern in my lungs and POSSIBLY one spot in my bones. This spot in the bone is questionable in origin and he was unsure whether it not it represented a spread of the cancer into my bones. However, given its presence ALONG WITH the 5 lung lesions, he felt it was just too much to justify moving ahead with the procedure. He feels that the loss of further lung function couldn't be justified by the hopes that the procedure would be successful in eradicating all of the Cancer. So...we are back to square one. We now know that surgery is no longer a viable option, nor is further radiation. At this point we are left only with chemotherapy (unless and until there is something new out there as a new option which to date there does not appear to be). Unfortunately my first round if chemo (about 2 years ago now) did not go very well. I got very sick from it and unfortunately it was not very effective at the time.
Luckily the spots are still relatively small in size and not yet at the point of causing much trouble...but they are there, growing, and the potential is always there for further spreading.
So I will go back to my Oncologist next Wednesday to regroup and talk about what options we have. At present they look pretty slim but I'll know more then. In the meantime we continue to stay positive and battle on!!!
With your continued support, we'll keep fighting every second I every day!!!!
Thank you all again so much and I will update again after next week's appointment as far as what lies in the immediate future.
October 1, 2013
Well we knew going in that last week promised to be busy with lots of info flying at us. As it turns out it ended up being even more info than we expected. I'll try to keep this as organized as possible...and with that in mind I will start with Tara. Many of you may know that Tara was diagnosed about 15 years ago with Cushing's Disease which left her VERY sick at the time. I won't get into the details as you can find those in other areas of this website. Of note however is the recent symptoms she has been dealing with. Chief among these have been insomnia, significant changes in her sleep/wake cycle, decreased energy, and EXTREME weight/appetite loss. We have been striving to figure out just what is going on with her to cause such issues. We have been working closely with her Endocrinologist, and working though many tests to try to get to the bottom of it and get her back on the road to good health.
Part of the problem is in trying to separate what info is relevant and what is related to her having had her adrenal glands removed. Unlike say, your appendix, a person cannot survive without adrenal glands. They are responsible for producing necessary hormones and assuring they are distributed in the appropriate amount At the appropriate times. Unfortunately your adrenal glands take their direction from many different sources. Healthy adrenals absorb all of this data and go to work producing the appropriate type and amount of hormones necessary to handle any situation and assure the delivery of those hormones to offset the body's needs. In Tara's case she gets only those hormones she takes in via medication and only at the doses and times in line with her med schedule. In the BEST case scenario this is a sketchy proposition leaving her prone to various medical problems. In addition, she is susceptible to occasional viruses, bacteria, etc given her compromised immune system. In the worst cases, whatever is happening leaves her vomiting. When this happens it is an automatic trip to the ER to assure that she at least gets her life essential hormones via IV. Without at least this intervention she could easily die by not getting life sustaining hormones. So...she has done an AMAZING job at learning to listen to her body and figuring out when she needs to take extra meds, when to adjust the timing, and when to recognize the need for an ER visit. It's a nightmare at times but Tara, as I've said MANY times, is the strongest person I know and simply deals with it.
So here we are...obviously given her extreme weight loss, fatigue, and sleep issues, something is very wrong. The Endocrinologist is convinced (and we agree) that her sleep/wake cycle being interrupted HAS to be addressed quickly. In her current situation it is akin to her body being in a constant state of jetlag. Anyone who has ever experienced jetlag can attest to just how debilitating it can be. IT only lasts for a day or two until the body's internal clock "resets" itself. In her case...it cannot. This could be contributing to all of her problems. Before we can start to look for answers we have to solve the reason behind the sleeping issue. So...step one is to arrange for both a CT scan AND a sleep study to get to the bottom of this. Luckily we are able to do these tests RELATIVELY quickly. She is scheduled for the CT scan tomorrow (Oct. 2) and the sleep study for Nov. 7. That's the first step and I will update her progress as we move forward. Please keep her in mind and in your thoughts and prayers as we move to get her back to a sense of stability to help her better cope with all we have going on.
As for me...I finally met with the Radiational oncologist last Thursday. In short, he corroborated the results from my oncologist that there were in fact new spots on my lungs that DID need to be dealt with. The two opinions however were not EXACTLY in line, raising some questions that need to be answered at some point. Where as oncology reported 4 "troubling" spots, this doctor was really only concerned about 2 of them. While the opinions do differ, it really doesn't effect the next step all that much. The Radiational oncologist explained that the spots get dealt with one at a time allowing us plenty of time and further testing to ultimately determine the final number to be treated. He also spoke about another type of treatment called "ablation" which is done by using local anesthesia to allow them to stick a needle directly into the lung and in essence "burning off" the cancerous spot. This is a procedure he was going to discuss with others to determine its appropriateness in my situation. Either way, the first step is a PET scan which works by using a radioactive dye being introduced thru IV followed by a scan. This scan allows the dye to attach to the sugars found in cancerous cells and light up on scanning to help decide just how many spots there really are. Once we know that we can then decide which to go after with which procedure. At this point however, it is VERY likely that I will have the PET scan (this coming Thursday), followed by the targeted radiation on however many spots it seems beneficial to do. Like surgery, there are only so many times they can do this radiation procedure before it causes long term chronic side effects. So we want to get the biggest bang for the buck. As for the radiation process itself...it is a 6 session course of treatment PER spot. So it they do one spot it'll be six sessions...2 spots, 12 sessions, and so on. The first session each round is a planning session where they take exact measurements and "tattoo" the exact location for the radiation beam. The second session is a "walk through" where they take me through the entire process except do not actually fire up the radiation. This works to make absolutely sure that measurements are correct and all is lined up. This is followed by 4 actual radiation treatments. They work on Tuesday and Thursdays so session one may be a Tuesday, session 2 that same week's Thursday, session 3 the following Tuesday and so on making each spot about a 3 week course of treatment.
So for now we'll see. We are on board to have the PET scan and start in on spot number one immediately after. By then we will know exactly how many spots need to/can be done as well as there is any benefit to look at this ablation process for any of the spots. We'll see.
Look like another busy week for both Tara and I but we are anxious/excited to be moving forward on both fronts. As usual I will keep you all posted and up to date as we move forward.
I will keep this update specific to this medical info. It seems that I will have a lot to update here over the next few weeks and will take the opportunity to keep you all up to date with the family goings on as well as we move along. Thankfully things are going well with the girls and for the sake of time and length I will refrain from adding much here and now on all of the happy family times. Please just know that in spite of all of this medical "stuff", our lives go on and happy times do occur. Thanks to your continued donations we are able to pay our bills and still find affordable means of providing positive, happy memories for the girls and the whole family and we remain grateful for that. I WILL update you all on those goings on over the next few updates. But for now....I just wanted to get this info out to all of you wonderful/caring enough to inquire. Thank you all so much!!
September 10, 2013
It's been a little while since my last update but thankfully, you may recall, we were in a 3 month "holding pattern" waiting to see what happens with the 3 new spots detected on my left lung.
Well...it's been three months and just got the results from the latest scans. Apparently the 3 spots that were seen in June HAVE grown. They are still relatively small but the fact that they are growing means that they are more cancer. In addition, there's a newly detectable spot, also likely more cancer, on my right lung now as well.
After consulting the thoracic surgeon who did my 3 previous lung surgeries, they are in agreement that I am no longer a candidate for surgery.
The last surgery was the one that finally put me over the top. After the first two, despite the loss of lung tissue, there had been no ill effects on my lung functioning. This last surgery changed all that. After this surgery, and the removal of an entire lobe, we finally reached a point where I AM having chronic negative effects. At nighttime, my lungs don't produce enough oxygen to keep me going so I have to sleep with an oxygen mask at night. In addition, I get very winded with fairly minimal exertion. Climbing steps, walking up hills, moving too quickly causes me to not be able to catch my breath and leaves me huffing and puffing.
Given this decrease in function, the surgeon refuses to do anymore surgery that would lead to any further loss if lung tissue. So....surgery is not an option. Chemotherapy....well we tried that once already for 6 months and had little success. It was a rough time and the chemo made me very sick. It effected my liver and its functioning. Given this, while chemo is still AN option, it isn't the best option yet. It is being kept as a last resort type of option. That leaves only one treatment option. Apparently they are having some success with a type of Targeted Radiation. I have already undergone radiation for the original colon cancer but have not had it targeting my lungs. It seems like this is a process by which they "incapacitate" me somehow and use very focused, large dose radiation directly on to the cancerous growths. They are able to direct the radiation to within millimeters of the target. He referred to it as "radiological surgery". While this process does involve killing lung tissue, apparently it is MUCH less than would be killed via surgery. So...I will be scheduled to meet with the radiation oncologist to get started ASAP with this process. I don't yet know a lot about it, how it's done, what the side effects are, etc. but, I'm gonna learn quickly.
So that's the medical "stuff" out of the way. The last 3 months have been relatively quiet but were filled with some interesting events. On the positive side I entered and completed a 3K walk for Cancer sponsored by a group called Me Strong which was set up by a high school friend of mine, Linda Ryan. Linda has fought her own battles with cancer and has come out on top. She used running as a way to help her get and stay healthy. She sets up these 3K races mainly in Florida, but being from Massachusetts she took her show on the road and set up this race in our hometown of Lexington. Having spoken with Linda numerous times about our "battles" I couldn't help but commit myself to walking in this event. I was joined that day by my brother Neil and wife Tara, both of whom stuck by my side and walked the entire course with me. Also entered in the event were both if my girls, Abby and Ally, as well as my sister in law, Tammy, my nephew Drew (who actually took first place overall), my niece Jessica, and family friend Miranda (both of whom finished 1-2 in their age group). It was an awesome day. The walk was a grind but we did it and felt great about it. Thanks Linda.
Finally since my last entry both of my girls celebrated birthdays (17 and 15), and Tara and I celebrated our 18 yr wedding anniversary. It's interesting how much more these annual "celebrations" have become to me. To be here still to celebrate with them is amazing and nothing makes me happier than to see my girls continue to grow and succeed, and to spend time with Tara. I am truly blessed.
I also passed another milestone during the past three months. When I was first diagnosed I was told that I could expect to have 2 1/2 years to live. August 7 was exactly 2 1/2 years from that date. Despite today's setback I have already surpassed the original prognosis and am still here and fighting on.
Finally, I just want to thank you all again for taking the time to read this blog, call me, text me, email me, or just pray for me. It is such a large part of what keeps me fighting. Knowing that so many care about you makes you want to fight that much harder to make them all proud. Thank you also to those of you who have donated money to us through the bandtogetherforgary fund. Your donations remain the single largest reason that we are able to deal with all of this. Having to stop working made our lives impossible. Paying our bills (rent, utilities, food, etc) is the single most stressful thing I face. The worry about having money to live month to month is far and away more stressful than any chemo or surgery treatment could ever be. Thanks to your generosity we have been able to make ends meet so far. While still a struggle, we are doing it. Without your help we would be lost. Thank you from the bottom of my heart.
I will update this site again as soon as I get any more information about the targeted radiation treatment.
Sunday July 7, 2013
A VERY happy 4th of July holiday to all of our friends and relatives reading this blog update. We hope your Holiday was full of fun, love, and excitement. As for us here...well 2 out of 3 ain't bad. We certainly had the love and managed to squeak out some fun, but in this heat we've been bogged down in...well lets just say there hasn't been a hell of a lot of excitement. In fact most of my days have been spent inside either in front of the television or planning the route from AC to AC. I learned very quickly that the heat and humidity just don't mix we'll with a 30% loss of lung function. Just getting the dog out for his daily routine proves a challenge mostly undertaken by Tara or the girls. I find myself huffing, puffing, and gasping for
air within seconds of stepping out the door.
I'd be lying to say that it's not a hit to the ego and a source of some depression. To think about going, in a timeframe of just 2 years, from a fairly healthy, working, contributing, husband and father, to the point where I cannot even take the dog out is a change which really hits home for me. Mind you that the recent heat/humidity has played a huge roll in this. While still challenging, when the weather is "bearable" so too is my ability to get up and out a bit more. In fact, Tara and I were able to actually participate and enjoy joining my brothers for their annual tradition of attending the Jimmy Buffet Concert at Comcast Center last month. Thanks to Larry taking care of our tickets we joined in the festivities. Of course it was a hot day so we met up with them a bit later and left a bit early. But by playing it smart like this, and realizing out limitations, we were able to join in and really have a great time with the whole gang. It was terrific!
On the flip side, lately we've been having a few "little" issues with the house. We needed to replace the kitchen faucet for one thing. And, we've got a blocked up drainpipe somewhere in the yard leading to water backing up into the basement, etc. little things like this, nothing major. In the past these are issues that I could save the landlord the hassle and just take care of them myself. Unfortunately, it too became very clear, very quickly that I am just not physically able to take care of these things any more. Thank God, we have a great landlord who is willing to jump in and take care of the issues but that's not the point. The point is that I just cannot do it myself anymore. After the last storm I needed to watch Tara and Abby go to work with the wet/dry to clean up the leaking water. In the end, it's certainly something that I WILL overcome and simply come to terms with but that's not to say its so easy to do. Just another of those wonderful effects of Cancer that the doctors can't warn you about and can't give you a pill to take care of.
On a positive note, Abby's boyfriend, Rob is in town from Florida. He'll be here another couple of weeks an will get to spend Abby's birthday with her next week and we are all grateful about that. They seem to be having a great time together and God knows the girls deserve good things. Ally too just keeps plugging along. She's spending time with her friends and getting ready to begin a month volunteering to help with Developmentally Disabled kids in a town summer program. Just got her report card and pulled a 4.5 GPA.
So, thankfully, good things all around for the girls. Tara too is hanging in there. Of course with her medical issues she too has her days but she just keeps on going. Thanks to her brother Jeff, we were able to borrow an AC unit to put up in the bedroom, and little things like that are all it takes to make Tara happy. You'd think she won the lottery with that darned AC. I think she hasn't stopped smiling yet.
So that's been the boring but true update.
Medically speaking not much to report at present. We know that there is still the little matter of the 3 confirmed cancerous lesions currently sitting in my left lung that will need to be dealt with somehow and at some point. The next scans will be at the start of September and we'll see what happens then (I will of course update the site accordingly), but for now its just carrying on. I still sleep with an oxygen tank to assure that I get enough oxygen at night to avert any medical emergencies, and have been supplementing and using it as needed during the day time as well to help my breath "get through the wall" and into my lungs during this nasty, hot, humid spell. Without it I feel like I'm trying to breath in a bowlful of soup. Not dangerous but very uncomfortable and draining physically and psychologically.
We do have Abby's birthday (July 10), Ally's birthday (August 3), and Tara and my anniversary (August 27) all coming up so there WILL be some happy times upcoming. We've all become accustomed to the fact that these events can no longer be about gifts and spending money to celebrate and thankfully (my own disappointment and feelings of failure aside) my girls are very understanding and mature and we will find affordable ways to celebrate with them and find new ways to show them how proud we are an how much we love them. And so, despite all of the negative we remain excited to be together and celebrate these milestones. Who knows maybe we'll get lucky and this heat will break and I can actually leave the house to celebrate.
Finally, I want to take a quick minute to draw your attention to an amazing event upcoming.On September 7th I am planning (and hoping and praying) to take part in a 5K walk/run to take place in my hometown of Lexington, Massachusetts. Info on this event can be found on the MeStrong.net website or on Facebook (me strong), or at race menu.com(look for the race in Lexington on September 7). Any questions please get in touch with me as this is for an extremely worthy cause.
ME STRONG began when a core group of friends organized a 5k run/walk in honor of Linda Goldthwait Ryan. Linda didn't want the run/walk to solely be a fundraiser in the fight against cancer. She wanted her community to get moving. Her doctors have since told her that her exercise played a significant role in her battle with cancer. I went to High School with Linda and she is a truly amazing person. After using the power of running and exercise to deal with her own cancer diagnoses she has begun to use these races as a means to give back to the communities and works tirelessly to get them involved in this battle against Cancer. All proceeds go to various people, organizations, institutions, etc all of whom are fighting this battle in one form or another. Linda lives in Florida but is coming back home to our hometown to put on this event. At present, and God willing, I have every intention of being there to walk the 5K and support Linda and this excellent cause. All walkers/runners are welcome. In addition, anyone out there knowing of any corporations willing to help by sponsoring this event please let me know. There are various levels of sponsorship ranging from $100-5,000 to assist in putting this event together. There are various "perks" of sponsorship depending upon the level. These range from advertisement on the day or the race, advertisement on the "official" race t shirt, sponsorship of runners unable to pay the entrance fee, etc. it truly is a great cause and for obvious reasons is near and dear to my heart. So PLEASE, anyone with ties to large companies, if you know of any contacts willing to help out...PLEASE let me know or have them get in touch with me. Whichever works best. Thanks you all so much for your continued support and help as we move forward in our own battle. We couldn't do it without you. Your support financially, spiritually, physically, and psychologically is all we have to rely on to help us continue to battle when at times the battle looks dubious. We love you all.
P.S. Happy 22nd anniversary today to my brother Larry and his better half, Ashton. Congratulations guys!!