Why a BMB Now?
In 2012, the first few months were the best I've had in a few years. The Remicade was keeping the Behcet's flares at bay and Polly was managed well with hydroxyurea.
In April, I began getting all sorts of odd inflammation in my hands and feet (shared in earlier posts). At the same time, my hemoglobin and hematocrit were climbing high and we had to increase the hydroxyurea dosing and add phlebotomies. Now that I've been off of the Remicade for over two months, the inflammation is greatly reduced. It's still here, but the disabling pain is gone. In the fall, the hemoglobin and hematocrit started falling, even after decreasing the hydroxyurea dosage. Hgb was 9.3 and Hct was 30.4 on Christmas Eve. No wonder I get so tired so fast. Something is not right.
The Diagnosis Information on the referral says: Neoplasm Uncertain Behavior Polycythemia Vera.
Homework for a BMB - Yuck!
Since I need to take Lovenox injections for a few days leading up to the procedure, I've talked my daughter Katrina and my friend Kimberly into pinching my gut and shooting me up. I know I'm a wimp, but for some reason I just can't give myself an injection. Yes, this from one who gets blood drawn at least monthly and has had many phlebotomies over the years. Katrina is doing a fine job standing in for her dad (he's in Germany this week).
I've been taking warfarin (aka Coumadin) since the life changing thromboses of my mesentary, portal, and splenic veins in 2007. The clots are still there and fortunately the body has an incredible way of creating new pathways to circulate blood.
To prepare for any invasive procedure, we have to adjust my blood's ability to clot to prevent excessive bleeding during or after the procedure.
Then, after the procedure, it's more Lovenox and warfarin until the blood returns to a safe "thin-ness" (It's not really thinner, it's just slipperier to slow down clotting).
The BMB Procedure
|image from University of Chicago Medicine website|
Thanks to one of the most authoritative resources, YouTube, I showed Katrina and Alex some BMBs that patients had recorded and posted. The numbing of the bone is really painful. Some go through the procedure without the twilight (conscious) anesthesia. I thought about it... for a nanosecond. I've been dealing with so much chronic pain that if I have a chance at some legal relief, I'm all in! I may have "chemo brain" but I haven't totally lost it. I gave up the martyr crown a long time ago. And thank goodness I have great health insurance!
When Katrina saw the one where the doctor said, "Oops!" a couple of time, she started to become real sympathetic.
This Year's "Rumper Sticker"
I want the medical staff to see me as a person, not a procedure. Thanks to the creativity of many friends on Facebook, I got lots of suggestions for what my daughter would write on my rump. Last time, she wrote "Private Property" and "Bad 2 the Bone" above each cheek. Some of this year's top suggestions:
- You Break It, You Buy It
- Objects in rear are closer than they appear
- Left Right
- You'd better buy me dinner first
- Warning -- Blast Zone
Here's the winner:
We'll see how the doctor reacts!