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Thursday, February 28, 2013

Medical Hope--Extended Edition

So, after 7 hours at the hospital, 16 x-rays, 11 tubes of blood and one bone marrow biopsy, the information my hematologist/oncologist needs to develop my treatment plan is working its way to the radiologist and  pathologist so we can review a plan next week.  Dr. Efebera is a confident, energetic practitioner who is obviously jazzed about her specialty.  I love that kind of professional...whether your thing is customer analytics or B-cell lymphoid malignancies, I respect folks who know their stuff, can explain it well and answer questions with depth and confidence.

The bone marrow biopsy was pretty painful but not as bad as the nurse practitioner made it sound.  She said that when she was withdrawing the liquid, I would experience "10-15 seconds of toe-curling pain."  I only curled my fingers and even though she told me it was ok to unleash whatever language that would help me, the worst it got was a steady stream of "owie, owie, owie."  So badass!

I'm working on a poem entitled "Ode to a Bone Marrow Biopsy"  What I've got so far is
I got a hole in my pelvis,
can't shake my hips like Elvis.
It hurts down in my marrow and
I'm stiff like a scarecrow.

Look out Maya Angelou!

Its been great to have words of encouragement and humor from my friends.  Ali asked me if I would need Amy or Claire to donate stem cells and I told her that they would come from me because "I don't want any hand-me-down stem cells anyway."  She said, "Yeah, those two are only half-perfect so their stem cells would probably be sub-par anyway."

My sister-in-law Karen was telling her sons about my situation and Spencer became very concerned. She told him "you know she is the strongest person I know!" Spencer said, "Yeah, she could win Wipeout!"

The other night when I was crying, Claire was mimicing my gentle, nurturing style by telling me there's no reason for me to cry and I need to trust the doctors to figure this out.  Thinking perhaps she didn't understand how serious amyloidosis is, I said, "You do realize people die from this".  She said with total certainty, "Yeah, people do, but you won't."  Love that kid's confidence.

Right now, if things go as planned, I will have chemo and stem cell transplant in early April requiring a 3-5 week hospital stay.  My friend Allyn said she could see me doing OK with that if I'm feeling poorly the whole time but she thought I might have issues being in the hospital that long if I'm feeling OK.  I'm looking at the hospital stay as a reset---reset my bone marrow, reset my focus, reset my attitude.  I'm going to try to be fully in the moment and catch up on movies, books, praying, contemplation, writing, yoga....all sorts of things to fill the moments.  How many times in your working adult life do you have an opportunity to have NO responsibilities or obligations for 4 weeks?  Granted, I'd prefer to have the chance without the illness, perhaps while touring Italy and Greece but I'll have to make the best of it on the 3rd floor of the James Cancer Center.

They have wi-fi in the unit so I can Facetime with friends and Karen said she'd come in and we could watch movies and do crafts.  I'm hoping to have lots of friends and family come and hang out...it just has to be two at a time.  My doctor said I would lose my hair from the chemo so maybe I can have some tattoo markers and have a competition to see who can draw the coolest design on my head.  I was thinking about getting a tattoo on my  head under where my hair will grow back so you can only see it during recovery from my chemo.  Maybe the winning design will become the tattoo.

But, I'm getting ahead of myself...I need to have a cardiac MRI on 3/19 to confirm there is no heart damage and have the nephrologist confirm there is no kidney damage.  My doctor said that looking at my lab results there is no evidence of damage to my heart, liver or kidneys but we have to confirm.  Next, its skiing for a week in Steamboat with Al, Claire, Amy, Sean, Deena and Gregg the last week of March then the Fleetwood Mac concert on April 4 with Al, Amy, Sean, Allyn and Jasper.

After that, its time for me and Dr. Yvonne Efebera, with an assist from Al, Amy, Claire and all my friends and family, to kick some amyloid ass!

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