The cancer continues to sleep. My oncologist, Dr. M., ordered blood labs of CBC, CMP, SFLCA, and SPEP. Nothing stood out, just a bunch of numbers. The myeloma is stable 17 months post transplant. I am not on any maintenance therapy. I take a multi-vitamin, 1000 mg of calcium, and a low dose aspirin each day. That’s all. I work fulltime. Simply put, I feel good… well, pretty good.
For several nights, a head cold accompanied by a scratchy throat disturbed my sleep. A low-grade fever accentuated all my age related muscular pains. The peripheral neuropathy in my feet throbbed. I thrashed about. My mind churned irrationally with anxiety about the bogeyman of multiple myeloma living in my marrow. The cancer awakened in spirit, if not in my body. What to do? Motion is my antidote for worry, so first some stretching, and then yoga, before heading out for one of my six-mile walks.
On Sunday, heavy wet snow fell most of the day. My maple trees drooped under the weight. I stayed home, rested and finished reading The Indian Clerk, a work of historical fiction about the Indian mathematical genius, Srinivasa Ramanujan. The book, by David Leavitt, culminates with the prodigy’s death. At one point during his illness, Ramanujan’s mentor, a renowned English mathematician, says, “Oh, what a sloppy science is medicine!” I laughed out loud with respect for those I know who suffer from the clumsy treatment of their blood cancer.
Monday morning the dirty residue of December’s storms lay covered in a fluffy meringue of snow. The footprints of a solitary fox pocked my driveway. Birds twittered when I appeared outdoors. I scraped clear a feeding station on the gravel and scattered their morning meal. Quail arrived from a distant thicket to inspect the offering. Juncos alighted in their midst, flicking their tail feathers as they dodged the bobble-headed game birds.
My virus had run its short course and work beckoned. I have not missed a day since returning last April. My immune system seems to have fully recovered from the stem cell transplant. As I review my treatment history, I admit the SCT was a shot in the dark that, due to nothing more exacting than luck, hit its mark. Even if I were to relapse sometime this year, the drug-free period I’ve enjoyed has been worth it.
Such is the confounding nature of myeloma. The glut of clinical trials cause as much confusion as they do clarity. Every imaginable combination of velcade, melphalan, thalidomide, revlimid, doxil, bisphosphanates, and steroids has gone to trial with positive outcomes. Arguably these drugs, which cost us four to eight grand per month, are geese laying the golden eggs for their respective pharmaceutical companies. You don’t need to be a math whiz to realize somebody is making a lot of money off of multiple myeloma. Now, if only there were a consensus of opinion as to how to treat this disease.
Instead, debates about cure vs. control and the pros and cons of transplants exist in the myeloma community. There are MM specialists on each side. All have compelling arguments, beautiful résumés, and statistics to back up their ideas. The trend, regardless of which protocol a patient chooses, leans toward myeloma evolving from an incurable cancer with a relatively short prognostic trajectory to one that may be managed for years and years. That’s good, but the choices continue to be difficult. The side effects of the chemo’s toxicity, along with the economics of insurance, add problems to the solutions.
Yes, medicine is a sloppy science, cluttered with guesswork, ego, and the taint of money. Nevertheless, it is our science. We’d like our care to be as neat as a mathematical theorem. Unfortunately, the complexity of human biology defies easy answers. Its best practitioners must be artists as well as clinicians. Alas, if only Ramanujan were alive he might write the equation for a cure: C = x + whatever. But he’s not. For now, I’ll commit only to staying active. After all, bodies in motion tend to …
Good Blood, Bad Blood 
I loved your very thoughtful post, as always, John. And, like you, I loved that quote. 🙂
Mainly, though, I am very very VERY happy to read that you continue to be stable. Yay!
LikeLike
Hi, John: Another beautifully reflective post. I was especially interested to hear your thoughts about the progress in treatment for MM. I lost a dear uncle to it three years ago and have a great friend (a young man of 30) who has recently been treated and is thankfully doing well. I will share your blog with him.
Your photos and musings are a welcome pause in my day, and of course I am always interested to know what you are reading.
Be well,
Emily
LikeLike
I loved this. Oh how much I have missed out on! Your posts along with a few others are so enriching…such an incentive for me to spend more time here. This sounds so silly, but since I’ve experienced such physical discomfort I don’t get on the pc like I want. Thank you very much for your last comment & idea of using ‘meditation’ and maybe Fampridine for spasticity. The ‘fampridine’ sounds familiar, I’ll have to research. Thanks so much…hearing others battle similar discomforts is comforting in some sordid way. I love the pic from your yard; it’s beautiful. Finally, your thoughts regarding MM are so familiar…and that fear of the returning MM bogeyman we all share, I suppose. You have a wonderful way of carrying on…yoga, walking, etc.
OH…regarding the cost of medicine such as Revlimid, etc., I sometimes wonder what I’ll do if/when I need to go on treatment because I’m now on Medicare D. It does not have good coverage on those types of treatment. I think I’m too wealthy for help but too poor to pay the 25% or 33% of the cost of drugs that are in the thousands per month. But I’m not all that worried about it…for some reason.
LikeLike
I’m so glad you’re still stable! It DOES feel great, doesn’t it?
Your photos are beautiful. I love to look at them as much as I love to read your writing (on any topic).
I wish I was as motivated as you are. I need to get outdoors more.
LikeLike
Thoughtful… just stay in motion, and hope the best for future generations.
LikeLike
Yes another beautiful piece that expresses so much about the state of myeloma treatment today. All these possible combinations are impossible to grasp and so many conflicting opinions. And yes no matter what happens the drug companies always win. Many are trying alternative therapies on their own which is probably just as well. And so true– “what a sloppy science medicine is” –especially the treatment of cancer –so blunt, so brutal, so uncertain! Gerry
LikeLike
“I admit the SCT was a shot in the dark that, due to nothing more exacting than luck, hit its mark.”
Another razor-sharp insight. I celebrate your remission and continued good health. I am still pleased to be “green with joy.”
LikeLike
Wonderful to read your blog – it’s the first time I have looked for this subject, as, like an ostrich, I am avoiding the possibilities of losing my husband who has MM. He also had STC in 2008, and had been in remission until this year(January) when his oncologist called him back in and said “it’s returned”. He is now on Thalidomide plus aspirin and other painkillers, but as he is a diabetic he has to also make sure that any of the drugs he is now taking don’t adversely react with his diabetes. As I am writing he is in hospital where they have decided to put him on morphine for the pain – his ribs, hips and back are all giving him gip. He’ll be there for a few days. I feel sooo helpless, as well as having a knot in my stomach all the time. One good thing is that here in Sweden we do not have to pay for any of the drugs or treatment, unlike yourself.
Your blog is very interesting reading, and inspiring. I wonder if there is one for those of us who live with MM but do not have it ourselves?
LikeLike