Friday, January 28, 2011

Back to the story

The day I was diagnosed with amyloidosis was one of the scariest days of my life.  I had so many had this happened to me?  When had my bone marrow gone haywire?  How long had the deposits been building up in my kidneys?  How damaged were they?  And if my kidneys were affected, which other organs might also be involved?  How advanced was the disease?  Had I caught it early enough?  Would the treatment be successful?  All of these questions and more were swirling in my head as I tucked Jason into bed that night.  He was only four years old at the time and had absolutely no idea what I had learned just a few hours prior.  We followed our nightly routine of a bath and a story in bed, but while my lips read the words my mind was elsewhere.  Being a full-time mom, Jason and I had an incredibly close relationship.  Since he had no siblings, we had a particularly strong bond.  There was just no way I could imagine not being here for him as he entered kindergarten, learned to read, and started sports.  I could not picture him growing up without me by his side.  As we snuggled in bed with him tucked perfectly under my arm, I knew I had so much to fight for.  This disease had picked the wrong mom to mess with.
I was scheduled for an evaluation in Boston to confirm the diagnosis at the end of March, 2007.  Steve was by my side as I underwent three days of incredibly rigorous testing which made a routine physical seem like a joke.  Extensive bloodwork was taken along with an abdominal fat biopsy, EKG, echocardiogram, full pulmonary work-up, bone marrow biopsy, and every possible restroom test you can imagine.  As expected, I was found to be a good candidate for the most aggressive treatment available:  high-dose chemotherapy with a stem cell transplant.  Unfortunately, not every amyloidosis patient is able to tolerate the toxicity of this mode of treatment.  We both remember quite clearly our conversation with the Clinical Director of the Stem Cell Program.  When asked what the risks entailed, she told us matter-of-factly, "You could die."  But Steve and I agreed that we wanted to bring in the big guns to deal with this disease.
After I was approved for the program, the details of the treatment were laid out for us.  First, a chest port would be inserted for the duration of the treatment, anywhere from 1-2 months.  Then, a growth hormone injection would be administered in order to stimulate my bones to go into overdrive producing new stem cells.  I would spend 2-3 days at the clinic hooked up to a stem cell separator machine, similiar to a dialysis machine, for much of the day while my own stem cells were extracted, preserved, and then frozen in preparation for the transplant.  During this part of the process, I would still live at home and drive into the city each day.
Prior to receiving the chemotherapy, I would be required to find temporary housing within 5-10 minutes from the emergency room for the duration of the treatment, as the high dose of chemotherapy would completely wipe out my immune system.  After the chemotherapy, my own stem cells would be thawed and given back to me via IV.  With no defense whatsoever against even the slightest cold or virus, I would be at high risk of infection.  As a result, I would need to adhere to a neutropenic, or low-bacteria diet.  No fresh fruits or veggies, and only well-cooked food would be allowed.  A compromised immune system would also mean I would be unable to see Jason at all during this time, until I was discharged from the program...which for me, would be the worst aspect of this ordeal.  Since children pick up all sorts of bugs in school, I could become critically ill from a germ easily defeated by Jason's immune system.  I felt I could handle any side effects the chemotherapy threw at me:  nausea, vomiting, hair loss, potty issues...but to be separated from my son; his smell, his hugs, his kisses, his voice...for three, four, six weeks or longer was more than I could take. 
A week or so later, I was given a start date of May 30.  Over the next eight weeks, my friends, family and I went into high gear preparing for my departure, with much the same intensity as a pit crew on a race track.  Like a well-oiled machine, we pulled together to arrange care for Jason, transportation to and from school and activities, playdates with friends, meals for the freezer and to be delivered to the house, as well as food for me and Steve to take to Boston with us.  As all of these tasks were accomplished, I set out to take on the most important one of all:  carefully planning how and when I would tell Jason what Mommy was going through and what was about to happen.

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