Dana Farber

Went up to Dana-Farber this morning for a second opinion on the radiation treatment and it was a quick and simple trip.  Initially I met with a resident and an intern and went over the entirety of my identification of the disease, diagnosis, treatment, etc.  It’s a little bazaar to sit in a room with people while one is actually learning about medicine, treatment, etc.  We actually witnessed this interaction, which was a little embarrassing;

Resident; “Did you have any numbness in your hands during chemo?”

Me; “No.”

Resident; “It’s a strange phenomenon, we see particularly in younger men, some hand neuropathy from the chemo,” (to intern) “what drug would cause that?”

Intern; …..silence….”The….” 

I don’t remember what she answered, but she did answer and she was wrong, but he was good about it and used it as a productive teaching moment.  I understand it is a necessary and important part of modern medicine to work in this fashion; it’s just a little weird when you’re the patient and they’re sort of quizzing each other over you.

Dr. Ng finally came in and after reviewing everything from Canaday and the PET reports basically said everything he suggested is how they would handle it there and she was very comfortable with the recommended course of treatment.  She was very pleasant and from what we understand she has been instrumental in reviewing several clinical trials currently being conducted in Germany on the treatment of Hodgkins, more specifically the elimination of some treatments, or the shortening of the treatment times.  It was comforting to get their sign-off and we were happy to know they had such universal agreement with the treatment plan prescribed here on the Cape.

At this point I have an appointment on Wednesday of next week to further plan out the treatment and make some surgical markings that will be used during the delivery of radiation, and I believe September 17^th will be the eventual start date, though that is not official.  Side effects from radiation remain minimal but could include problems swallowing, some loss of taste, thickening of saliva, fatigue, and some other surface skin issues in the treatment area.  I’m anxious to get started and work through it.

Labor Day weekend is looking good, BC football tomorrow afternoon at 3:30 (ABC) and a lot of relaxing.  Enjoy your weekends and thanks for the visit - Gary

Livestrong Presidential Cancer Forum

I failed to note the event earlier, however it remains an important and relevant part of political discourse...the Livestrong Presidential Cancer Forum took place this week in Cedar Rapids, Iowa, with a host of Democratic and Republican Presidential hopefuls discussing their views, experiences, and ultimately their proposed solutions for Cancer. Many of the proposals were predictably vague, however the idea of making the debate more public and helping raise additional awareness is a good one and working with policy makers, particularly the possible next leader of the free-world, is a great start.

The Lance Armstrong Foundation continues to work hard to raise awareness, raise money for cures, and bring a level of pride and comfort to those struggling with cancer, their families and loved ones. I admire the work he has done to turn his own struggle into a public crusade and the effort he has spent to help improve the situation. I hope to be able to participate in LAF events in the future and look forward to seeing the foundations continuing progress.

Update on Appointments/GO SOX!

Yesterday was the big day of the month with appointments with both my Radiation Oncologist (Dr. Canaday) and Oncologist (Dr. Aviles) to first discuss the radiation process and then review the results of the PET Scan from last week. I was running a fever when I got to the radiation appointment so they sent me for blood-work...no concern as it just appears to be a little sickness, nothing related to cancer. Canaday explained the whole radiation process to me, which currently looks like a 3 week treatment process (15 visits) and should have mild side-effects, if any. I enjoyed the meeting with Canaday, who was very informative, knowledgeable, and seems to be very easy to work with.

There were no results in for the PET Scan, however preliminary indications from the physician who was reading it were very positive, with no signs of any issues at the moment. The appointment with Aviles was basically to go over those results, so without them we were essentially able to reflect on things and further discuss what radiation might be like. I am very appreciative for the care and expertise he offered throughout the process; from calling me shortly after I was diagnosed, to meeting with me bi-weekly to review things, the whole experience was very smooth and I feel fortunate to have doctors like the ones I have had the pleasure of dealing with here on Cape Cod.

Friday I return to Dana-Farber to see a Radiation Oncologist there for a second opinion, which I expect to be a non-event as the Hodgkin's plan of care continues to be very predictable. It's daunting to visit Dana-Farber, as it is a very visible and tragic reminder that not all fare so well and that my experience is far from the norm when it comes to dealing with this disease. You find yourself thankful that the resources are there, but sad that they need to be, and that so many are forced to use them.

After that I go back next Wednesday for some additional radiation planning and the current schedule looks to have me starting in mid-September, around the 17th. So, by October 5th I may well be completely done with treatment and ready to move into the monitoring program, which will last 10 years and consist of periodic scans, blood work, etc.

Red Sox Nation is fully fixated on the upcoming 3 game set in the Bronx with the hated Yanks, though this weekend brought some much needed breathing room - with the Sox now sporting an 8 game cushion in the AL East. A sweep in NY, while unlikely, would all but bury the Yanks chance at the Division and severely impair their shot at the Wild Card, which they are currently 2 games back. I am extremely excited for the match-up; no matter the difference in games, standings, etc. a Sox/Yanks series is always exciting - it will be a fun three days. Then we have BC Football starting on Saturday v. Wake Forest - 3:30, ABC which means I'll be on the couch, AGAIN.

Other than that life proceeds as normal; we had a blast on MV, very relaxing and great weather. Looking forward to another long weekend this weekend - with no plans to speak of, probably some BBQ's and a lot of beach/relaxation. Enjoy yourselves - Gary

Martha's Vineyard/PET Scan

Tomorrow at 11:30 is my PET Scan, which is a longish process (injection, wait 45 minutes, then go into scanner for 20 minutes or so) that gives doctors more detailed imagery than the CT Scan and will be a great benchmark for how things went with chemo. I won't get any results until next Monday, but I'm not nervous about the test or results as the mid-point CT showed great progress.

Friday Kristina and I will head out to Edgartown on Martha's Vineyard for the weekend...a great opportunity to relax and celebrate the end of the chemo process, and almost the end of summer. Martha's Vineyard always offers a great opportunity to wear clothes you wouldn't be caught dead in elsewhere and color schemes loud enough to scare small children. The bald look isn't really in-line with the whole island lifestyle, but the new-age prepsters out there will have to deal with the glare off my pale dome, it's the only head I have to bring.

So I'm keeping things light and happy to be feeling well - looking forward to some R&R and a great weekend; post an update next week after I get the PET results and meet with my oncologist and radiation oncologist...almost time for radiation, which means almost time to be all done!

The Game

Belated posting on the game the other night...which was incredible. I was lucky enough to get tickets on very short notice from a BC friend who interned for the Sox back in the day (thanks again Johnny) - and he came up big for us; incredible Pavilion Club seats with a great view of the game. I met up with my friend Scott, another BC comrade, at 6:30 and we headed in for some dinner and first pitch...It was really cool to see Lester come out of the bullpen and take the mound, and the fans were incredible. He pitched a great game, 2 hits, 1 run, 7 complete, but was still facing a loss when he left the game...all the Red Sox fans reading this know the rest, and yes we stayed until the bitter end. The ending was really spectacular - total playoff atmosphere in Fenway and Lowell's HR sent the place into hysterics...you almost felt bad for those poor souls who decided to leave at the end of 8 - no faith.
It was a great game and a really special night for me; to see a guy pitching who had been through much of the same process as me was really nice, and the welcome he got from the Fenway Faithful was inspiring. As a fan you loved the game, the comeback, everything, but as a cancer patient there was something a little more special, a little more meaningful. I walked out proud to be a Red Sox fan and proud to be facing and beating cancer and ready to move on with my life.
I'm sure there were patients and families across the country watching that performance who may not be so lucky, who may have lost loved ones to the disease, or who are not physically able to do the things that I am...that's why after all I have been through I continue to count myself as tremendously lucky; lucky Kristina saw a lump on my neck, lucky to be young and healthy, lucky to have good medical care, lucky to have tolerated treatment so well, lucky to have such wonderful friends and family, lucky to be ready to move on. I never thought "why me?", but when you go to a place like Dana Farber and see all the people there who are really struggling you think, "why not me?" No, I never expected to have cancer at 28 years old, but I think it has made me a better person, has forced me to rethink things, and has dramatically altered my perspective on life, health, and mortality.
So, as I stare down the barrel of radiation and look forward to the rest of my life I count my blessings and stand ready to do what I can in the future to help others who may not be as lucky as I am.

Holding Pattern

Had another great week/weekend, with plenty to keep me busy. My youngest brother Kevin was home and it was great to see him before he headed off to school at Sierra Nevada College (this is not the brew making university for Sierra Nevada Pale Ale, though I'm quite sure he'll enjoy a few while he's there). Kristina and I headed down to Narragansett, RI on Saturday to visit with some of her friends from college who have a house there for the week; we had a great dinner in Galilee and enjoyed a nice day at the beach on Sunday before heading back to the Cape in time to see Tiger pull out another major victory. Unfortunately we also got to hear the Red Sox blow another lead to the Orioles in the car - brings the spread b/t them and the Yanks to 4 games.
As for cancer related news there isn't any, and won't be any for a while; I have a PET Scan scheduled for the 22nd and then follow-ups with my oncologist and radiation oncologist on the 27th. At that point I should have some clarity on exactly how effective the treatment was, where I will go from here and how radiation will be. Personally I've been a little tired since the last treatment, nothing too bad, but just a little run down, fatigued, etc. I'm enjoying the bald thing for now and will probably keep it that way for at least a few months...Kristina shaved it with a razor last night and it's looking a lot cleaner now, I also managed to get some additional sun on it over the last few days, so it's not quite so stark white anymore.
Tomorrow night is Jon Lester's first start back at Fenway since his diagnosis and I am going to head up to witness it. I remember when he was diagnosed (remember, we had a different diagnosis, but Lymphoma nonetheless) thinking how crazy it was that such a young guy, a professional athlete no less, had been diagnosed with cancer - it was difficult to comprehend. Then when my own diagnosis came many people recognized it, or were somewhat familiar with it because of the Lester connection. I watched some of his first game back and it was really special to see him out there, less than a year after the initial diagnosis, pitching a major league game. When I heard the other day he was scheduled for the start at Fenway I felt really strong about going and seeing this amazing recovery story first hand. So, I should be there tomorrow night to witness his return to Fenway and I am fully confident that the ovation he will receive will be incredible - Red Sox fans have a lot of respect for the game and take tremendous pride in seeing one of their own conquer something that is so frightening, something they may have dealt with in one form or another...I would imagine the crowd will be cheering for Lester, and for anyone they have ever known who has been touched by this terrible disease.
So, I am hoping for a strong performance from Lester and the Sox, and looking forward to an exciting month of no treatments, and some fun stuff too...heading out to MV in a few weeks for a mini-vacation, which is much needed at this point. Thanks again for coming by and I'll try to update any relevant, and irrelevant, information over the coming weeks...Gary

O....V....A.....OVA!!

Done, complete, hasta la vista to chemo. Happy to be done and I thank each one of you for the role you played in helping me succeed - its easier to do this with an excellent support team.
Looking forward to a free month and am so happy to be done with chemo...time to celebrate, with a nap.

What a Weekend

I had an amazing weekend...woes of being tired, etc. from last week are all gone and I felt great all weekend long. Friday night was able to play some golf with BC friends who came down, then we had a little cookout and played cards all night. Saturday was the 9th Annual Holly Hog golf tournament at Holly Ridge. This year the money went to the RHCI Center for Children, and a total of $4,000 was raised to help them fund a new computer initiative for autistic children. It's a great golf tournament, with a huge focus on fun and we had a great time, even though the heat was brutal. After the tournament it was more BBQ and cards, then to the official tournament BBQ, and then back for some more cards. It was a great time and had a blast catching up with friends from BC and a pretty big contingent of folks I grew up with in Sandwich.

Sunday was softball bonanza day, with games at 9am, 1pm, and 3pm...things did not start off well as we were down a player from the get go and were forced to play with only 3 outfielders all day. This was no way to handle the playoffs, particularly considering our stunning record of success all year long. We won our first game, 11-3, which was a pleasant surprise. After the game Kristina and I headed home for an hour and she shaved my head. I simply got sick of wearing a hat and the few hairs I had left up top were more an aggravation than any sort of actual hairstyle - so I am officially bald now and I love it, no more hats, no more worrying about my hair - it's all gone now, as the picture above demonstrates. All I need is a little sun to even out the color on top of my head with the color of my face; as it is now it looks like I'm wearing a white swim cap.

So, after being shorn like a field sheep we headed back to Sandwich H.S. to see if our miracle one game playoff winning streak could be stretched to two. Again we played a man down and again we romped to a victory, 13-6. Lo and behold, the RHCI softball team, the same team that barely eked out a victory all year and finished second to last in the regular season, was playing for the championship. Our opponents were surprised to even see us show up at the game, and having handily beat us twice in the regular season I'm quite sure they were all ready to celebrate back-to-back championships. We were all pretty tired from a long day, and excited to have made it that far...at worst we were going to be second place in the league, but the stars were aligned a little differently for our squad yesterday.

It was a back and forth game with three lead changes, but we found ourselves protecting a two run lead, 7-5, as the offensive powerhouse we were playing took to batting in the bottom of the 7th. We were three outs away, and we made all 3 of them look fairly pedestrian...there it was, the Bad News Bears of the Sandwich co-ed league, celebrating in the middle of the field as league champs! We had an incredible day of fun out there and the 9 of us who showed up for what many thought would be a futile day of playoff games were rewarded with three amazing victories, and a trophy, which we will be bringing out to a local watering hole to drink from and celebrate with the rest of the team who wasn't able to make it.

Amazing weekend and it's going to be an amazing week as well...I'll get that same emotional high of victory when I walk out of chemo on Wednesday, that I experienced yesterday. Though I still have radiation to go, completing this process is an emotional victory for me, and a physical victory for my body. It was made easier by all of the incredible support I have had from employees, friends, family, and especially Kristina, who has played chauffeur, cook, guardian, and most recently hairstylist. Perhaps her greatest feats were keeping me happy and positive at the few moments I was not, and for always letting me know how much she cared and loved me - those things make a tremendous difference when faced with a challenge like cancer.

I'll end on a final note of thanks for each and every rider in the Pan-Mass Challenge this weekend, they battled heat, exhaustion and trained for months to help raise the funds needed to continue to fight against all forms of cancer and I can speak for patients everywhere when I say thank you - we appreciate your dedication, hard work, and passion for fighting cancer in the best way you can. I look forward to riding in it myself, probably in 2008, as I try to parlay my first hand battle with cancer into an effort to help others in their battle to face down and conquer this disease.

Thank you all so much for all you have done for me, I look forward to writing on Wednesday when I am 100% complete with my chemo! Best, Gary