Monday, May 3, 2010


Yesterday I sat in the middle of the garden pulling weeds. (I cannot bend over or squat anymore.) I am not supposed to work in the dirt because I might inhale opportunistic infection agents such as aspergillus, So I held my breath for thirty minutes. (I have had some practice in breath-holding in the past few weeks). The intruders had overtaken the garden in a dense mat of intertwined interlopers. However, I soon found that one weed in particular was the source of the majority of the mass. It had spread its metastatic tentacles over a 1 square meter of space, occasionally shooting feeders down into the soil. I slowly separated this mess from the other weeds and drip system only to find it attached to the earth through one tiny stalk. I carefully pulled up on the stalk and, of course, it snapped leaving an equally elaborate root system below. We delude ourselves as we then look at the bare garden with pride; for the lurking roots our just waiting to return. I decided to rename my diease, amyloidosis, 'weeds'.
Somehow it feels the same. The tentacles of aberrant proteins choke off the good organs to prevent their normal function. I can 'Round Up' these invading plasma cells with drugs like Revlimid or Velcade. But there is always the risk of simultaneously killing off the good fruits of normal tissues. At one point I thought, "Only an atomic blast would annihilate this unyielding root system, similarly, a complete stem cell transplant might accomplish the same goal. Alas, these buggers are sneaky as it only takes one lone survivor to perpetuate the population. So we survive by occasionally trimming back the weeds to at least temporarily provide sufficient light, water and nutrients to the life giving plants that nourish us as we nourish them.
I took two months off from chemotherapy and felt wonderful, but the weeds grew and my light chains went over 160. After one course of Revlimid/Decadron/Cytoxan they have decreased to 130, but with the price of fatigue and malaise. But, the garden continues to grow and, with faith, this will be a very productive this year.



Aunt Renie said...

Dear Kevin, I like your analogy to protein-filled unruly weeds inhabiting an otherwise healthy body.
I can't imagine the side effects of your chemo triple Round Up! Whew!
And yes, you have a vast, beautiful garden that continues to give many blooms!

Aunt Renie said...

Just an update on our situation: Ed is doing really well on Revlimid, tho tired from 50% platelet count. His lambda light chain is down to 202 after 3 cycles. We're glad for the week off inbetween! He gets a dex workout every weekend which is amusing & exhausting. And his creatinine is down to 2.5. He's been able to use his anatomy/ physiology Ph.D. to minimize side effects.
The more we know, the more we can work with these modern medicines! And we're so thankful for His Many Blessings even tho they come in Very Weird Forms!
Sending you & Barbie my love.