Tuesday, July 10, 2012

Myeloma, Revlimid, Velcade, Dexamethasone... A Rambling Thread

On June 19, I returned to the Dana Farber to begin the first of several chemo cycles which will culminate in a stem cell transplant in early September. The initial cycle of four treatments on consecutive Tuesdays and Fridays, consisted of Velcade and Dexamethasone. Last week was treatment free. Today Tuesday, July 10, begins the next four part cycle with Revlimid added to the Velcade and Dexamethasone.

As I resigned from my work effective June 29, anxiety struck and I  had a sense of how Wylie Coyote must feel in that instant of clarity, right after chasing the Road Runner off the edge of a cliff . Seemed like a good idea in the moment, though the ramifications are significant and decisions need to be made fast!

At sixty-three I was prepared for everything but continued health care coverage. Not that I had ignored it, but the fact remains unless one is a retiring CEO of a major US bank,  or a congressperson, (even a one term congressperson), when one's job ends it's difficult to avoid joining the ranks of Americans without health care. The choices available are expensive and fraught with limiting covenants, like preexisting conditions, that classify many of us as ineligible to join a new health care plan.

It was once considered a patriotic investment to enable affordable health care and education for the American people. Today more than 50 million citizens live without health insurance and more than 50% of college seniors will graduate with an average student loan debt of $25000. Before 1980, the amount of student debt was negligible in comparison.

In terms of the treatment I was struck by the level of fatigue that follows about an hour after the Velcade 'push', while the Dexamethasone kicks in with a wired, edgy effect disrupting sleep on the first night. However, I'm not complaining. Granted, I have completed just four sessions in the first of many cycles, but a light, splotchy rash on my back and chest is the only other side effect thus far.

On each visit an hour before the drugs can be administered, for those new to the process, blood is drawn and analyzed to be sure various markers - creatinine, protein, liver function -  are strong enough to handle the treatment. During the last appointment my Infusion Nurse, Mary, scanned the preliminary blood work and told me I was a "problem drinker" and hooked me up to a bag of electrolytes. As I don't drink alcohol, the label referred to my lack of daily fluid intake resulting in a slightly inflated creatinine, a measure of kidney function. One of the reasons I don't drink enough water is that at sixty-three the frequent need for a men's room when out and about can be inconvenient. Thus, I consciously watch how much I drink if venturing from home. Mary strongly advised that the inconvenience of possible dialysis is far more significant.

Boston is a beautiful city almost year round and this summer will rank among the most glorious of my lifetime. Hundreds of small sailboats skip across the rippling currents of the Charles River, the sun's squint inducing reflections flash from the bleached white sails which snap, and turn, subservient to the wind currents. Half push toward the northern banks of the university dense Cambridge shoreline; the rest cut back, heading for the concentration of Boston's skyscrapers, separated from the southern bank of the river by the narrow gardens, lagoons and bike paths of Boston's Emerald Necklace. Carson Beach, twenty minutes by trolley or a forty-five minute walk form the Charles, is packed with families and singles of all ages basking in the sun or clustered neck deep in threes and fours, in the unusually warmed Atlantic Ocean off the South Boston shoreline.

The tough 'Southie' kids keep it in check because of the many children scattered across the sand. They're not bullies for the most part so it's relatively trouble free during the day. Of course if you go there looking for trouble, you'll find it before your second step splashes sand into your flip flops. Surrounded by working class neighborhoods there is a disproportionate representation of combat veterans, recently returned from a second or third tour in Iraq or Afghanistan. A few years ago they were the tough 'Southie' kids but now, sitting on blankets or beach chairs, they stare out to the vast expanse of the sea, and the hope of a life force strong enough to help, for the moment at least, ease the pain of the harrowing ferocity of combat. They tend to keep to themselves and most give them space.

I can't help thinking of Paula Kilgallon every day. The way Paula lived defines, for me at least, how precious this life is and how little time we have to taste and feel and discover the tantalizing gifts hidden in the moments we let pass by. I apologize if this sounds like I'm trying to preach, as if I have answers to the obvious questions. I have no solutions or strategies that might open hearts to a level of awareness that is, frankly, much higher than that which I possess. The truth is, as I read this back, I am talking to myself from start to finish.


  1. I've wanted to comment on this post for a few days, but I scarcely know where to begin. There are so many ideas here. Paula and her zest for living, creatinine scores, the beauty of Boston, the tough Southie kids, veterans, new beginnings, multiple myeloma, chemo, the politics of health care and student loans. Hmmmm. Decisions, decisions. I think I will settle where you ended, on Paula. She taught me to laugh more, share more, love more, and even now, she makes me smile when I think of her. I don't have all the answers either, but I do feel a bit closer to knowing how to live because of her example.

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  3. Stephen, Thank you for posting a comment on my blog as it prompted me to check out your blog. I love the way you write. A real talent. You are also an inspiration to me. I always like to connect with people who have defied the odds and continue to find life even in the face of this insidious disease. Dana Farber is an excellent cancer center, as you well know and are living proof. Fear not the auto transplant if that happens. You will likely get through it fairly easily and it could very well drive your disease into a deep hole. Best to you.

  4. Best Wishes for your transplant. I hope everything goes well for you.

  5. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?