Friday, August 15, 2014

The Beat Goes On

Is it too obvious that I love to be taken care of when I'm less than 100%?  It's true. As I spend hours in isolation from malls, grocery stores, church gatherings, parties, and Walmart, one would think I would use that isolation to communicate in a germ-free, email kind of way. Wrong! Instead I find myself wishing some member of my family would take the time to update my friends on the continuing health saga that dictates my current activities. After all, they only have children, spouses, jobs, homes and LIFE going on around them.  Can you believe there have been no sibling arguments about who GETS to write an updated post?

Pat used to quote some comic who said "Sometimes I sits and thinks and sometimes I just sits."  Guess I'll sit and think about what has happened since the last update!

Not much. Not much has changed. Get chemo for five days running (takes only a couple of hours). Blood counts play Limbo--how low can you go!  Week after chemo my WBC is so low it scares pathologists who don't know me. This week is the week after. Friends visit or I may visit them, but I don't go to public places. I usually have to get transfusions for platelets and red blood cells--I get platelets much more often than red cells. I had both today. Getting blood products takes a long time, and God bless those who give blood generously for people like me.

Next week, I may creep above 0% for the smaller white blood cells. Right now, there are none.  By the last week in the cycle, my numbers begin to rebound just in time to knock 'me down again. It's like bowling with Davis. I just about have those pins lined up and looking good and BLAM! Wish the reset button worked better.

Can you see why I don't write this stuff?  Routine. Cyclical. Predictable.

There may be a twist come Labor Day. That is the week I would normally have the next round of chemo. This time he's pushing it back a week (Sept 8, my 65th birthday) so we can do a bone marrow biopsy (Sept 3) to see what, if any, effect this chemo is having. They will also take tissue to analyze for genetic mutations that might be addressed by oral medications.  This is the test they tried in July to no success because I didn't have enough white blood cells to study. Put me to sleep, and you can take all you want! Callie and Davis will come for a week-long visit that week—they try to catch me when I am feeling my best!

After we get these results, there will be options to consider.  I am planning to do a consultation with a leukemia center in mid to late Sept, probably Dana Faber Center which is associated with Harvard. They win because it is in Boston, and I’ll get to see Davis! (and Callie and Mike)

Nothing dramatic, I hope, will happen until after the very small but very special wedding of Kit and her fiancé, Demian Kato on Oct. 18. This wedding was envisioned quite differently from what is evolving. Destination wedding--not Chattanooga. 2015, not 2014. Small but maybe not as small as it is now planned to be.  It just seems right to do it with family now in the case that something (I’m looking at you leukemia) compromise my ability to be a part of the wedding.

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