Before I continue Nick’s story, I wanted to share a wonderful experience I had yesterday with you. Before we moved to Florida, while I was writing my first book, I started corresponding with a gentleman named Jack Pacowta. Jack had started a multiple myeloma support group in Jacksonville, Florida. Jack was frank, open and honest about his condition. Even then, he wasn’t doing well. But very sick or not, he always had time for me, my book and other fellow myeloma patients. His wife, Anne, has continued to lead the group, even after her husband’s death last year. So, despite the four hour drive each way, yesterday I headed northeast from my new Florida home to attend and speak at the November Jacksonville support group meeting. Was it ever worth the trip! Anne is caring, accomplished and charming! The group members were so well informed, I think they helped me more than I helped them! (But that is how this type of thing is supposed to work, right?) I met several regular blog readers–which was fun. About 20 persons attended the meeting. And a number of them even purchased copies of my book, Living with Multiple Myeloma, which was both humbling and gratifying. We specifically discussed Nick’s story and his enthusiasm and hope for a cure using Total Therapy. Several group members expressed their concerns: Since Nick will have used most, if not all novel therapy drugs before, during and after his tandem transplants, what will he do if, god forbid, his myeloma ever returns? Nick, all were supportive, and hopefully optimistic Total Therapy will work for you. And if it doesn’t? I suggested that’s OK–you can then use one of the newly developed anti-myeloma drugs, now in the pipeline and available soon! Here is Part Two of Nick’s story:
At any rate, I did learn that it’s almost impossible to find two physicians that agree on precisely how to treat the disease. The only thing that they agree upon, almost universally, is to avoid looking at the Internet for Myeloma information. It’s all extremely bleak, because it is backward-looking in large part. Now I couldn’t completely force myself to avoid it, but I did take it with a grain of salt. I used the Internet to help me create a “decision tree” of treatment alternatives, and I used the first couple of consults to learn about the disease, and the rest of them to help hone my decision tree.
Ultimately, my decision was to go for the most aggressive treatment possible with the intent of eradicating the disease. Many people feel it’s not possible to do that. My doctor disagrees – violently, actually – with those who say it can’t be done. I’m told there are raucous exchanges, as these things go, at hematology conferences on this topic. And knowing my doctor as I do, I’m sure he gives as good as he gets.
I started treatment none too soon. I went from Stage I disease at diagnosis to the point where I had four broken vertebrae in my back, early stage renal failure, high calcium numbers and early signs of anemia. The CRAB showed up, all right, and it was beating me up pretty bad!
I spent about six months in active therapy, which included four courses of chemotherapy with multiple agents, two consecutive stem cell transplants, and additional therapy along the way. I achieved what my doctor calls “very profound complete remission” in the last month of this primary therapy. Of course the trick is staying in remission – and for that I’m on this three-drug cocktail for the next three years, with the goal of making my system so unfriendly for Myeloma that the last of the little buggers gives up the ghost.
So right now, I’m exactly where I hoped to be. I achieved the best outcome from therapy that can be measured at this point, and the side effects of treatment weren’t really that big a deal. I mean I suppose I could complain about the exhaustion, the hair loss, and what-have-you, but part of what I brought to this battle was a “damn the torpedoes, full speed ahead” positivity. Every time I did something that hurt or made me feel sick, I envisioned that it was killing a hell of a lot more cancer cells than it was healthy ones. I could take it better than the cancer could. So every injection was a “take that, cancer!” moment. I didn’t stress about every little thing that could go wrong, every little side effect, etc. I had exhaustively researched the potential serious impacts of the medications I would be receiving – and I questioned my doctor (and others) very directly about these potential problems. But once those questions were answered, I didn’t really look back. And I never really wavered in this approach, other than a brief period of concern when I hadn’t achieved complete remission after my second transplant. But again, it was part of the program – I was still seeing the impact of the first transplant long after my second transplant was done.
Now, my life is fundamentally the same as it was before I got sick, with the exception of these weekly doctor’s visits and the pills I need to take. But again, I don’t dwell on that. It’s simply something that has to be done. I didn’t ask for this diagnosis, and I’ve had to make some concessions to the disease, but treating these things as anything other than matter-of-fact things that just have to be dealt with, in my opinion, yields too much to the cancer. I got sick. Very sick. I chose a path to get better, and that path involves some things that healthy people don’t have to do. Oh well. It is what it is. I’m not going to let it dictate my life.
Consequently, I don’t feel like I’m living with Multiple Myeloma. I’m living without it, and taking steps to hopefully keep it away forever.
And here, I must note, that I’m one of the lucky ones. There are 15% of patients who don’t respond well to any kind of current therapy, and there are more who are allergic to one or more of the medications that I am on to be in maintenance. There are others who didn’t have the good fortune to be diagnosed as I did – most people learn they have this disease when they go to the ER with a sudden broken bone. And the on-staff hematologist probably starts them on whatever protocol they believe is the right thing to do, even though they may not even be a Myeloma specialist. And if they’re not lucky, these patients are treated sub-optimally.
More from Nick Tomorrow.
Feel good and keep smiling! Pat