Team In Training
1 Reply Latest reply: Feb 3, 2009 4:04 PM by Alan_livingstrong RSS

My story - from a chemo chair to the finish line of the Disney Marathon.

Alan_livingstrong Registered Users
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I was diagnosed with stage IIIA Hodgkin's lymphoma in early 2004. Hearing it for the first time was a very surreal moment. I thought that the Doctor was talking about someone else at first, then I looked at the tear rolling down my wife's face, and I knew it was me. I've always been a very physically active person; just six months before this, my two awesome kids and me had earned our 1st Degree Black Belts in Tae Kwon Do.  I've always been a fighter, and it was very hard to have to step back and go into treatment, but it was time fight a different fight. I was afraid, but I knew I would win this one, I knew I'd be fine.






I underwent six cycles of ABVD (chemo) and two additional cycles of ABV. (Those last two were without the Bleomycin, which has harsh side effects and has given me some difficulties.) Each cycle consists of 2 chemo treatments. I would get a treatment and wait two weeks to recover, and then get another. I did have a mediport put in for the chemo. After all that, I underwent 40 cycle's of radiation therapy, which was not as bad as the chemo. All this took a little over a year. (This is the short "clinical" version of the whole treatment experience.) And I must say, I had a lot of family support and I tried to keep a positive attitude the entire time.






Right after my treatments, my oncologist explained to me that because of the advanced stage of my lymphoma at the time it was diagnosed, my chances of recurrence was about 60%. (60/40...I took it, I liked my chances) He also said that the further out I get from my last treatment the lesser the chance of recurrence. My percentages would have been different of course if I were originally diagnosed at a lower stage. (And at a younger age too) I'll be following up with CT/PET scans and lab work and what ever else over the long term. I'm down to once a year now and my 5-year mark is coming up soon.






It's been over to three years since my last treatment and I'm doing well. I was getting easily fatigued and a little short of breath for a while, (thanks to the Bleomycin) and I have also been diagnosed with hypothyroidism, which simply means that my thyroid gland has slowed down to the point of almost non-function. (thanks to the radiation) So I now have to take a levothyroxine drug, Synthroid, and I will be taking this or some type of medication for the rest of my life. I'm also using a treatment for low testosterone, AndroGel® (also thanks to the radiation treatment and/or chemotherapy), and I regularly get B-12 shots. Plus I am taking vitamin supplements and I'm very careful about my regular eating habits. So with all things considered, I'm doing well for 43 years young. Well enough to have trained for the 2009 WALT DISNEY WORLD Marathon Weekend as a member of The Leukemia & Lymphoma Society's (LLS) Team In Training.






I completed the marathon on the 11th of January 2009, and I raised over $5000.00 along the way.  And collectively, all of the Team In Training (TNT) participants raised more than $7 million at the WALT DISNEY WORLD Marathon Weekend. This took alot of determination by everyone involved and it was a tremendous accomplishment that will go a long way towards helping LLS fight blood cancers.






I have come to believe that my personal survivorship is a gift from God and I am trying my best to make the most of it. This awareness of how fortunate I am is a big part of what drives me to do the things I do.






I don't mind sharing my experience. There's been so much in a relatively short time; it sometimes overwhelms me to think back over it all. But I am continuing everyday to get better physically, mentally, and spiritually. I volunteer for the Leukemia & Lymphoma Society and also the American Cancer Society. That has become my new medicine.






In the days since returning from the Disney Marathon Weekend, it's been back to work and the same day-to-day stuff, life goes on.  I have most of my pictures from the Marathon and I am gonna post them on Myspace plus I'll be writing all about the weekend experience in a blog... but I gotta catch my breath first!!! It was such a whirlwind and I'm still processing it all.  Completing that marathon brought me full circle, as I started as the "honored patient" for the 2008 Disney Marathon.  So it meant a lot to me on many levels.









Now I'm back to my role as the "honored patient" for the next Team In Training season so I've been speaking to potential new "heroes" at info-meetings the first three nights since my return. Hey, it's only fitting. The fight against cancer goes on, it doesn't end just because I ran a marathon. And on the 30th of January 2009, I will have laparoscopic surgery to obtain a biopsy on lymph nodes in my abdomen to find out if my personal fight goes on as well.






You see, my wife and I saw my Oncologist in early December regarding my recent PET/CT scan and the news wasn't good.  I had truly expected that scan to be normal. It was my first CT/PET scan since last year.  My oncology doctor moved my scans to once a year due to the continued improvement that I had experienced since finishing treatments in April of '05.  I had come a long way from chemo and radiation to marathon training.






These are quotes from what that report said:






"Abdomen/Pelvis:  There has been an interval increase in size and interval development of hypermetabolic activity in a few right-sided mesenteric lymph nodes (SUV max 5.3, SUV average of liver 2.5).  Physiologic radiotracer distribution is seen in other portions of abdomen and pelvis.  There are no other enlarged or FDG-avid abdominopelvic lymph nodes, or any other soft tissue lesions."


















1. Interval recurrence of lymphoma a few right-sided mesenteric lymph nodes.



2. No other PET or CT evidence of malignancy."






So, in plain English it seems that even though I have been feeling the best I've felt in years, the cancer may be back.  Ain't life grand?! 






Hearing that news was like DeJaVu all over again! But at such a surreal moment, what is a person supposed to think? To say? To feel?  The first time, when I was originally diagnosed, Believe it or not one of the first thoughts I had was " I don't have time for this, I have a Tae Kwon Do tournament this weekend!  There's no way in hell I'm missing it!" 






Was I crazy?!  I wasn't thinking "I'm going to get sick and maybe die!" or "Why me?!"  Just "What about my tournament?!" 






Then I thought about my kids, Eric & Marie.  I gotta be a dad to them.  I thought of my wife too.   I don't have time for cancer!  I gotta life to live!   I DON"T HAVE TIME FOR CANCER!!!






Well, this time it was "What about my marathon!"  Still crazy after all these years!






So, the plan is to have the laparoscopic surgery, but not until after Christmas and the Disney Marathon!!!  Doctor's orders!  Then based on those results, proceed with the appropriate treatments.






So I haven't forgotten, and I never will. One mile at a time, until we reach the finish line.  A CURE!












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