It's roughly two years to the day since I began treatment. I took my medicine this week, including Zometa (a pricey little thing at $3,400 per infusion!) to hopefully spur my bones into healing quicker and resolving those remaining inactive tumor sites. If they're all gone by the time of my next trip, with some luck I won't need to have a fine needle aspiration done on any of them!
And I deal with the side effects. All things being equal, of course I'd rather not be on this stuff. My muscle atrophy is bad...I used to have a pretty well muscled lower body and now it's nowhere near as strong as it used to be. Between tiredness and the barrage of winter colds encouraged by my intentionally suppressed immune system, and of course my work schedule, it's hard to even think of when I might exercise but I really need to start physical therapy. Damn, I should have made that one of my new year's resolutions.
But I remain very fortunate. I'm thinking now of two groups of people...the first group is comprised, unfortunately, of a small but growing numbers of fellow Myeloma travelers I've met since my diagnosis. Some were quite sick at the time of my diagnosis, and some were not yet diagnosed. But several have given up the struggle and lost their battle with this horrible disease. These people are friends in a very real sense...and I feel the loss. Just today, I was looking through another blog and found that the woman that maintains it lost her husband literally yesterday after a single transplant a couple of years ago.
Then there's another group of friends who have chosen to control the disease, with minimal use of drugs and reserving stem cell transplant as a last resort, etc. For a time, these friends seemed to be faring well but one by one they are losing remission. I fear for them, not because they necessarily will have a dire end any time soon, but because it is a reminder of where the "control" path leads. To eventual recurrence and the hope that science outpaces the disease. And certainly there are more drugs now than ever before to help beat it down. I will of course be reliant upon the newest of these in the (unlikely) event my own disease returns.
Then there's yet another group...people that contact me through my blog. On average, I get perhaps two emails a week from newly diagnosed patients. It is one of the most rewarding things in my life when this happens...I feel like I am able to provide a little perspective, and some optimism. I started this blog, in part, because everything I read was so defeatist. I remember the book saying "your new birthday will be the date of your transplant, nothing will ever be the same, etc." Well I had two of them, and I can scarcely remember the month with confidence, much less the day. And while there is a "new normal" that has replaced the "old normal," I would say that most things are very much the same.
So this is rambling, but I guess I would say to my second two groups: don't be afraid to take the fight to the disease if it's acting up. Don't be afraid of a transplant if that's part of the protocol you and your doctor choose. Don't fret about the side effects: the side effect of untreated Myeloma is death. That's a bigger deal than hair loss! Or the other side effects -- which I humorously found mentioned on another blog as NVD (never thought of my initials being a mnemonic for nausea, vomiting and diarrhea). As I mentioned during my own transplant experience, they are very good at controlling the first two.
And while I strive not to be messianic in this blog, if you are newly diagnosed, PLEASE do yourself a favor and investigate aggressive therapy. People are being cured in large numbers. It bothers me so much when people refer to Myeloma is incurable. That's simply not true.
All that said, the aggressive path is not for everybody, but three things are:
* Find a Myeloma specialist. NOT just any old hematologist, not somebody who dabbles in it along with lymphoma and non-HL and leukemia. But somebody who REALLY knows this disease.
* Take control. Demand your labs. Ask questions. Learn everything you can about the disease. Be your own advocate.
* Bring a positive attitude. Once you have selected your treatment path, be confident in your choice. Put your trust in the hands of your doctor. Remember, any pill you take or infusion you receive that causes an unpleasant side effect is killing your cancer and upsetting it much more than the rest of you.
* Commit to getting better. Make this the most important thing in your life. If you have to move temporarily to be closer to a true center of excellence, do it. Your home will be there when you get back. If you worry about the expense, consider this is the fight of your life and if it's not worth burning through savings on this, what is it there for? If you worry about vanity like hair loss, get over it and get better. Nobody chooses this path: you are dealt a crummy hand. You can either play it to win, or fold. Play it to win.
Thursday, January 27, 2011
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