Saturday, March 23, 2013

Stem Cell Transplant... Six Months Out.

This morning I walked west bound on Beacon Street for about a mile and then back to my apartment, (just two miles from Fenway Park). Beacon Street is lined with old but well kept, three and four story brownstones interrupted at random intervals by contemporary, concrete gray apartment buildings. Shrubs and flower beds form a border between the buildings and the sidewalk. While walking today I noticed white and purple crocuses pushing through the dirt, rhododendron buds swollen with purpose amidst shiny green leaves and a sprouting tree here and there. Not many years ago I would jog this same route to clear my head of work stress, oblivious to spring's nascent beauty along the way.

I completed an auto stem cell transplant this past September. 'Auto' is short for autologous and, as my friends on this path know, refers to a transplant of one's own pre-harvested blood. An allogenic transplant uses a donor's blood. On day one, I reported to a procedure prep area and an hour later a port for drug delivery had been painlessly inserted, high on the right side of my chest. Next, I was delivered to a bed in the sterile enclosure of the stem cell transplant area, and placed in the care of a  bright, intense team of specialized nurses.

At each point of my three week stay the nurses prepped me for what was to come, describing in detail how a procedure would be done, why it was being done and how it would effect me.  Melphalan was administered on days two and three and on day four, my bright red stem cells were returned to my body and went to work.

Knowing that melphalan rages on myeloma cells made the discomfort, (some nausea and diarrhea), easier to put up with. I followed the advice of my nurses; by chewing ice chips during the chemo infusion and using a prescribed mouth wash as scheduled I minimized mouth sores. Just getting out of bed and walking the floor around the nurses station, strengthened me enough to win my release a day or so earlier than planned. Adhering to a few simple guidelines like hand washing, avoiding raw foods and germ laden environments like supermarkets for the first three months, I remained free of colds and flu.

Having a caregiver for the first week or two at home is important. I wanted to avoid burdening my son and daughter, (both in their early twenties), during recovery. Brushing aside my concerns they took charge, coordinating visits and preparing a sterile and functional environment at home ahead of my discharge. Once home they sent updates to family, worked out a transportation schedule for follow up appointments, shopped for groceries and cooked my meals. I think they spoiled me.

Once the decision is made to undergo an SCT it helps to be aggressively positive from the start. Focus on the results you are hoping for and rely on your nurses who have cared for hundreds of transplant patients before you. I thought of the many who had preceded me, some with more than one SCT, and I knew I'd get through OK.

My desk faces three large windows that line the wall of my apartment on the backside of the building. With my morning coffee I look out beyond the resident parking area to a sparsely wooded section that rises sharply to a neighborhood of old, wood frame, Victorian houses set on the highest elevation in the town. A huge red brick and field stone retaining wall, 50 feet high by 200 feet wide, built in the early 1900s, supports the high ground. A pair of cardinals, the male a bright red streak chases the female, camouflaged in a subdued maroon splotched with brown and grey,  collect material to build their nest. They have been a special presence during the three years I've lived here and it's good to have them back as spring arrives.

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.