Thursday, October 22, 2009

Nine More Years?

Today, I heard the results of yesterday's Bone Marrow Biospies, which found no tumors in the base of my spine! The Biopsies were still sent to a lab to be studied more closely, and the doctors expect that there will still be some tumor in the bones, since the bones are always the last to heal. My PET Scan from Monday also came back, and while the results weren't groundbreaking, there is still clear and substantial progress being made. The same was found to be the case with today's bone scan.

All of these tests and pre-test procedures are tedious, but it's really nice to know that all of the hard work and suffering is paying off. Though I've been told that the high rate of recovery I've witnessed so far will likely taper off towards a slower pace, my only hope is that the treatment continues to be effective, so I can get the disease into remission and head back down to NCI (National Cancer Institute) in Bethesda, MD for the vaccines.

Immediately before chemo started, I was lucky enough to take part in a vaccine trial for a variety of very rare tumors. It consisted of a number (six, to be exact) of Bone Marrow Biopsy samples to isolate the tumor, followed by a day of collecting my blood and platelets in order to create a personalized vaccine of my own, for my own particular illness. Though the trip to Bethesda was painful and postponed the beginning of chemo, the hope was that by administering the vaccine to me in the end, once the tumor is in remission, then my body will have a better chance at preventing the tumor from returning. Apparently, the second vaccine trial run was fairly effective and with new and improved research and procedures, the hope is that this trial will be even more successful than the last.

The logistics seem to add up, which is great. But we all know that numbers and statistics don't always hold true in the real world. When talking to my friend, who was really excited over the news of the past few days, he told me that "all I have to do is focus on the big picture; the light at the end of the tunnel."

He is exactly right. If I could focus all of my energy and attention on that day so many months from now when I hope to hear those magic words that I can go back to living my life, it would all be so much easier for me. Unfortuntately, that just isn't possible. I still have to feel the nausea slowly creeping in as I sit here in my chemo bed. I have to deal with the next two weeks of illness, which make the routine things in the day ever more difficult, lonely, and frustrating. I have to continue living in a body and a mind that I don't fully recognize, continuing to wonder when I might once again feel like myself.

My dad and I came to the consensus together the other day that at this point in time, it would be hard to see my life being any worse. The limitations on my daily opportunities combined with the constantly overwhelming sickness make it seem obvious that my life is a troubled one. Although it sounds awful, it really made me feel better to hear someone else agree with me that my life was just about as bad as it could get.

I joined Planet Cancer, which is an online social networking site for young adults with cancer. I didn't expect to meet a ton of people, but I want to get my blog out there to as many people as possible and maybe even to connect with some people with whom I share my struggle.

The other night, around 12:30am, a girl sent me a message on the site's instant messaging system. Having been previously unaware of such function's existence, the instant message caught me by surprise.

She told me her name, and I reciprocated with mine. She asked where I was from, I answered and she answered back. To make a long story short, I was shocked that this girl, who happened to be fourteen years old, was meeting people on this site at 12:30am on a Tuesday, or a Wednesday depending on how you look at it. I would like to believe that even if things are bad, like even as bad as cancer, that 12:30am is still pretty late for a fourteen year-old girl on a weeknight.

More disturbing to me still was this child's revelation that she has been battling cancer since the age of 5. That makes nine years. Nine years makes my four months seem trivial and easy, though a simple length of time cannot begin to explain this experience, nor can one use time as a means of beginning to understand it.

My experience has been undoubtedly different from hers. How? I can't be sure, though hearing her say "nine years" made me feel deeply for her and put my own six-or-so more remaining months in a much different perspective. It also made me wish so strongly that I will be done with this thing after whatever chemo, radiation, vaccines, etc. they say need to be done are done.

Nine years? It's a scary thought. But I've always said I would take this one day at a time. And today, on a daily basis, my life is a colossal struggle. At least I can find solace in the fact that my tests came back nicely, so the treatment is working. I'm dedicated to being in remission and on with my life way sooner than nine years from diagnosis.

2 comments:

  1. planet cancer is amazing, and it's really put things in perspective for me. my little brother had two different types of cancer over a 5 year period (he spent almost a total of 2 years of his childhood in the hospital, most of which he doesn't remember now) and now i've got hodgkin's. but when i'm feeling crappy, i always remember that there are people who have it SO Much worse than either one of us. at least there's that light at the end of the tunnel...

    good luck with the six months going "smoothly" - i've got 2(!!!!!) treatments left and now i'm so paranoid about getting the flu and having to postpone through the holidays (right now i'm scheduled to be done by thanksgiving)

    lauren

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  2. Hope to see you today and share in the good news. It can only get better!
    Grandma

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