I have a cancer, multiple myeloma, that effects the plasma cells in my blood. This December marks seven years since diagnosis. Somehow, a single plasma cell, which is a type of white blood cell, mutates and starts to multiply. The bone marrow acts as the blood cell factory and warehouse. When it gets crowded, the balance between healthy red, white, and platelet cells suffers.
The high concentration of plasma cells leads to complications. Low grade anemia is one. I have transient fatigue; it comes and goes. Also, plasma cells perform valuable tasks for one’s immune system and the malignant portion are unable to produce antibodies to fight germs. Hence, I am vulnerable to opportunistic infections. If I get a cold, it’s often a doozy.
Then, there are the drugs. The cumulative side effects of treatment are as troublesome as the disease. Early on, I underwent three distinct protocols of chemotherapy, culminating with a stem cell transplant. I lost my hair, which grew back; I developed numbness in my feet that has not improved; and it was a full year before my strength returned to normal. After that, I lived drug-free for 2 1/2 years.
Eventually, in spite of feeling well, a regimen of maintenance with target based therapy seemed prudent. One year later, we chose to enhance that therapy by adding the teeter totter experience of steroids to the mix. Two years farther along, when the maintenance drug lost its effectiveness, my doctor recommended a switch to one that aimed at a different target on the disease spectrum. Furthermore, the standard of care warranted the addition of a drug aimed at maintaining bone health.
As a cancer “veteran,” I’m what you would call a responder. Every drug I take works … for a while. I also tolerate them well. In essence, a patient attempts to “buy time” with these treatments. It’s a ludicrous concept really, because time is not a commodity. It cannot be owned or saved for later. Nonetheless, I’d probably be dead were it not for the chemo.
The drugs have not rid me of the cancer. They have, however, slowed its growth. That’s the goal with myeloma. My PFS, (progression free survival) compares with high end numbers on clinical trials associated with these drugs. If this were a game, you would want me on your fantasy team.
Jerome Groopman
Multiple myeloma remains incurable, but in some patients it can be managed for a long time. Routine blood tests monitor the malignancy. I have blood drawn every three weeks. A complete blood count and chemistry panel determine if I can receive an injection of my targeted therapy. Another test measures the tumor burden in grams per deciliter. So, my doctor and I have data to help us determine when it’s time to try something new.
The chart above covers the last five years and paints a picture of the myeloma’s activity. Zero is normal and my current level remains lowish. That’s good and reflects well on the decision made last January to throw a curve at the disease. The upward trend, though, illustrates the patient, relentless modus operandi of this serial killer: it does not stop coming at you.
Dr. L and I adhere to the strategy that less is more. With quality of life in mind, we are working our way through the maintenance options, milking their effectiveness for as long as possible. Due to that and my age, I am averse to harsher chemo regimens, not to mention, another stem cell transplant.
In summary, my MM has an indolent personality. I’ve outlived the original prognosis. Yet, the disease is dogged in its determination to progress. I indulge in recommended treatments without regard for their toxicity: you do what you gotta do. I balance the somber world of cancer with the whimsical company of cats. And, I feel pretty good in spite of the fact that that graph line keeps climbing.
Good Blood, Bad Blood 
Seven years and counting. I’ll drink to that, comrade!
warmly,
Marcy Westerling
http://livinglydying.com/
LikeLike
I’m raising a glass in a virtual toast to you Marcy. Your writing makes a difference. 😊
LikeLike
Brother John: Another wonderful post. Perhaps a little too real in its assessment of the disease. The graph is — well — graphic. But you tell the story so well, with the right amount of science, patient explanation, and personal insight. I am not sure an anthropomorphic analogy is the best way to discuss this, but I wonder whether your deep interest in the disease and you elegant discussion of it, as well as your willingness to battle it, somehow impresses the disease, and it in turn provides the openings for the meds to work so well. Nonsense, I know. And the seven years have allowed you to have a beautiful granddaughter to hang out with. She could be the best medicine of all I was in London on a medical evacuation. Persistent headaches for a month. No brain tumor or anything terrible, just some weird malady that gives me headaches. Fortunately the aches are diminishing. If only there were an inverse relationship between the decline of my headaches and my ability to make short putts, then all would be well. Nevertheless, I’ll tee it up tomorrow morning in about 48 degree weather. Clear and nice.
Another week out here and then off to Hawaii for a week, then on to The Hood. See you New Years Day. Looking forward to watching Oregon play some team some place. Merry Christmas. Love to all, gg
LikeLike
Pardner, bang home those little putts. 😉 See you after Maui.
LikeLike
John – as usual enjoy every word. And celebrate the fact you are here and continue to battle that DAMNED cancer. Wish Kenny were here battling along with you, however we know that was not to be. Trista continues to survive and prosper so we are grateful for one success out of two in our family. And honestly, I guess since we consider the Smith’s family…we can count 3! Take care and you & Mar have a great holiday. I am at the coast house and enjoying the drizzling rain and 47 degree weather. AH…no ice no snow…heaven truly!!!
LikeLike
TY Nancy. 😊
LikeLike
always look forward to your posts. Your attitude is so rational and sane. Wishing you many more years.
LikeLike
TK, always nice to hear from you.
LikeLike
John, this one, like each of your posts is beautifully written. I love the rationality of your approach. Your deep determination is ever-present in your writing. I imagine it like a quiet giant at one’s side, gentle during peace but fierce and selfless when his friends need help. Your approach is humbling and inspirational. Thank you, please always keep writing.
LikeLike
TY Nick for the kind words. Science and nature keep me thinking rationally and trying to distill the realities of illness and injury inspire me to write.
LikeLike
I so admire your fighting spirit and clarity. I believe that it’s this, more than any drug, that has held the monster at bay. You will be with us for a while. Warmest wishes to you this holiday season.
I want to let you know that your post didn’t show up in my Reader. This is a bug that often happens when WP undergoes an “upgrade”. I’m going to unfollow and refollow. Sometimes that works.
LikeLike
Thanks Julie.
Thus far, your posts do show up in my reader without a problem. Overall, WP is “bug” tolerable. Blog Spot, OTOH, is quite constipated by comparison.
I hope your holidays are fun and that the New Year brings you happiness and peace.
LikeLike
Yeah, WP is definitely better than Blogger. I don’t know why certain blogs jump out of the Reader and others don’t. With this update, only two have had that problem so far. I’ve learned to manually check the blogs I follow every few days.
LikeLike
May you have seven more as good as, or better than, the seven before.
LikeLike
Loved the prose, the information and the insights, as usual. My Favorite part this time, though, was seeing that Savvy is studying along with you. Much love,
Janet
LikeLike
Yep, Savvy is the best medicine. 😉
LikeLike
Inspiring you are ~ and I’ll join the cyber-toast for another incredible seven years (and then why not seven more after that…)
LikeLike
Dear John,
we’ve been out of touch for so long. I am glad that you are carrying on the best you can. Your granddaughter is such a big, beautiful girl! I wish you and your family a wonderful new year.
Lots of hugs and good wishes,
Liliana
LikeLike
TY L. Yes, the granddaughter is good medicine. My very best wishes to your extraordinary family for a great 2015. And, a personal wish that you will find time to write more! 🙂
LikeLike
Hey – I’ve always believed that if I understand the disease, I can fight the disease. Better the known than the unknown. I appreciate your good words and outlook – any cancer patient can understand what you write. Especially this one. Wishing you a most wonderful new year – may be time to say goodbye to the old one, but glad to have had it… 🙂
LikeLike
Best wishes for a “healthy” 2015 keeping MM at bay! The beautiful views in Seattle, your adorable granddaughter and feline friends certainly help make life sweeter!
LikeLike