Wednesday, July 18, 2018

Registry "oops" and treatment update


First of all, apologies to all who tried to register for the bone marrow registry – only to find that the cut off for being a donor is under age 60.   I didn’t know that when I posted it.  I do appreciate your willingness to check it out, though.  If I may be so bold….if you have offspring or friends that might be the right age and willing to check it out, please pass on the link.

Mercifully, I’m home for the next couple of weeks.  I spent 8 days at Cedars getting chemo and definitely experienced some major hospital fatigue during that time. It was a rough stint.  Among other things I developed a very uncomfortable skin rash, my heart rate dropped at one point to 35 BPM causing all kinds of concern which proved to be unnecessary, my feet swelled up several times to where walking was uncomfortable.  I was connected to an IV pole most of the time and had to drag it with me whenever I went to the bathroom, shower or for a walk around the unit.  I had two lumbar punctures (where they infuse chemo into your spinal fluid, which is where cancer apparently likes to hide – it doesn’t hurt).  On one day, I was infused with each of the following:

·         Cytoxan (chemo)
·         Methotrexate (chemo)
·         Mensa (infusion to protect my kidneys from damage due to chemo)
·         Dexamethasone (steroid)
·         Insulin (to lower glucose highs caused by the steroid)
·         Adavant  (anti-nausea)
·         Lovenox (blood thinner)
·         Heparin (anti-coagulant)
·         Rocephin (anti-biotic)
·         Vimcristine (chemo)

And of course, there is typical hospital routine of being woken every 4 hours for vitals, blood draws, pills, etc.  Not to mention having to wear those awful hospital gowns and eating crappy hospital food when you don’t have much of an appetite to begin with.

Wah wah wah. 

So, I’m home now and feeling OK.  Somewhat weakened by all the treatment, but overall comfortable and happy to be here.

As mentioned, Ill be back to the hospital later this month…hopefully for just 2-3 days.  Meanwhile, the search continues for a transplant donor.  I’ve been advised that 3 individuals have been identified as 9/10 matches and there is one 10/10 match out there.  We are waiting to hear back from them.  

Fingers crossed.



3 comments:

  1. Glad your home. Wish and pray for the best in finding a donor for you! Hang. In there !

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