Thursday, July 4, 2019

Day 42



I’m at day 42 post-transplant.  I’m making very good progress.  Results wise – the numbers are very very encouraging.  The donor cells are engrafting and I’m growing back an immune system.  I’m no longer neutropenic (which is when my immune system is so compromised that I have almost no defense against infection).  I’m not experiencing any signs of rejection of the donor cells.  In other words, it looks like we may have succeeded in overcoming the cancer…although it is too early to declare victory.  The first 100 days are the critical period, but here at day 42, things are very much on track and days when things are most likely to go wrong are behind me. 

I was hospitalized for almost exactly a month.  It was quite an ordeal.  During the time, I received a lot of chemo.  I received a full body dose of radiation.  I got the donor cells.  I had daily infusions of anti-rejection meds, antibiotics, electrolytes, and other things.  I didn’t have much of an appetite, but I managed to choke down enough nutrition to keep myself healthy.  There were a few days when I didn’t leave my bed…but mostly I was able to walk the floor I was on.  I wasn’t permitted to go any further since my immunity levels were so low.  I’d be lying to you if I didn’t tell you it was hard.  I was pretty miserable, despite the fact that I got terrific care from the medical staff and the nursing staff and tremendous support from friends and family.  Every day when the doctor came through on rounds, I would ask him if I could go home today.  And finally, after 30 days, I got the affirmative.

It was great to get home.  But I was REALLY weak once I got here.  For about the first two weeks, everything I did was an effort.  It’s hard to describe.  I wasn’t like sleepy tired.  And it wasn’t like the fatigue of having worked out too hard.  It just felt like getting out of my chair required preparation.  Even just to walk to the kitchen for a drink of water.  But it’s been a few weeks since then and as I write today – the 4th of July – I’m feeling much stronger.  I’m have more energy.  I’m able to walk about ½ mile without much fatigue.  I’m eating and sleeping normally.  And little by little I’m starting to feel like myself again.  I’d say that day 42 out of 100 is a pretty accurate gauge…I’m about 42% of feeling back to normal.

I’m still somewhat limited in that I don’t have a completely bullet proof immune system, so I can’t be in places where there are a lot of people yet.  I can’t go to a crowded movie theater.  I can’t be around my grandchild, since 2 year-olds are little germ factories.  But overall, I’m feeling good about things.  Just a bit impatient about how quickly I’d like to be back to normal. 

Happy 4th of July!


11 comments:

  1. God bless you. I praying for continued excellent results. Enjoy the 4th

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  2. Sending you healing love, Ed ❤️��

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  3. Very encouraging Ed! Your strength and determination are inspiring and your caregivers are
    angels. Raising a glass to day 100!

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  4. So happy to hear your encouraging progress.

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  5. Ed, great news! Glad you are home and getting stronger!

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  6. Ed, this is great news! Hope you keep progressing without bumps in the road. It must be torture to not be able to be with your grandson. I know it would be for me!

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  7. You are in Lori and my thoughts and prayers! May the next 15,000 days go better!
    Lori & Jim

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  8. Great to hear about your improving health-we are keeping you in our thoughts each day. We send our love, Paul & Judy

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  9. I also have MM and ALL. (Not an easy combo to find.) I celebrated day +42 of my allo on the 5th. Sounds like we are having similar experiences, (although I had reduced intensity conditioning). I especially liked your description of the fatigue. It IS difficult to describe, but I think you did a good job of it. Hang in there, (as am I). Off to my daily infusion visit soon! ��

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    1. Hi, Kelly! We should connect. Email me directly. Larrytalbot_99@yahoo.com.

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  10. You are a rock star Ed. I think about you often. Don’t Stop Believing

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