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52 Weeks and Counting.

September 6, 2012

I was put in the randomized yesterday for the drug study of which I am a participant. While I like to imagine a great big, heavily animated machine with an all-knowing Oz behind the curtain, it is really just a simple computer program that spits out one of three choices at will. At me, it spat interferon.

Interferon is the current standard of care and despite the repeated encouragement to join the drug study because it was my “best chance for survival”, I am now being told by the oncologist that the standard of care will suit me just fine.

They have actually done genetic studies on my melanoma and the oncologist, whom I highly trust and respect, has informed us that with my stage, genotype, and ulceration, that my subgroup has shown excellent response to this course of treatment. His words were “I have no hesitation placing you on interferon.” That is about as gung ho as he gets and I have to say that is reassuring in an oncologist.

So what does that mean for me? In a nutshell:

1. Starting Monday, I will have 4 weeks of infusions at the hospital 5 days a week.
2. The infusions will take about 30 minutes each and factoring in all the other things that have to take place, it will mean about an hour out of my day.
3. I have to be infused at big Vandy (that is the main hospital campus for those of you who are not in the know) on Mondays but the rest of the week I will be infused at the outpatient clinic that is less than 10 minutes from the office–it will give a new meaning to lunch break for the next month.
4. I may or may not get a line placed for the infusions. We are going to play it by ear and although I am a fairly difficult stick, we are going to see how it goes. We will, however, not push it and I may well end up with a PICC line.
5. They call this first month “boot camp”. That seems a little dramatic, then again, I have never served in the armed forces.
6. After the first month I will switch to subcutaneous injections in my guts three times a week for the next 48 weeks. No, that is not a typo and no, I did not mean 4-8 weeks. 48 weeks total, bringing my treatment period to close at the end of a full year. One. Whole. Year.
7. This medicine is not “a little dab will do ya”. It is important to finish the whole course for the treatment to be most effective. I have to say, today I am little jealous of those lucky cancer patients that get to have their six weeks of radiation or their eight weeks of infusions and move on.
8. No, I don’t actually think that any cancer patient is lucky in any regard and I am not trying to minimize anyone else’s experience, it is just that today feels like a a year is a long fill in the blank with four letter word of your preference time.
9. Side effects are pretty much a given. This drug originated the term “flu like syndrome”. Right now, I can’t imagine having the flu for a year but ask me this time next year and see what I think.
10. Despite my decision to get out of this by being “intolerant” of the medication, Chris and I have decided after having read a whole lot of very specific literature that if our doctor feels that this medicine will be effective, we will power through it. Or at least we will give it our damnedest.

I am trying very hard to not have a predetermination about now the next phase of treatment will impact me. I am trying very hard to keep my imagination in check and just let things happen as they happen. Unfortunately, I have a very vivid imagination. Thanks, but no thanks for all that childhood reading, Mom.

Physically, I feel better than I have in weeks. After my most recent hospitalization and bout with infection, I have just sat back. I haven’t rushed myself back to work. I have let other people feed us and care for us and I have just let myself heal. And sleep. And get stronger. And it has worked. I feel like the next year is an achievable goal.

My biggest struggle over the next year is going to be in my mind. I don’t know if you have noticed the prolific use of the word feel in this post. Determination, discipline, and tenacity balanced with equal parts humility, flexibility and willingness to let others be in control. I don’t know which will be harder but I know that I will come out of this a better and stronger woman.

See, it isn’t all downside!

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