100 Days and Other Exciting News

Day +100 IMG_5932
I’m not quite sure why the 100th day after a transplant is so important.  Probably because it’s a nice round number.  Getting to Day +100 is a big deal.  The worst of the symptoms should be over and the donor cells should be grafting well in the bone marrow.  It’s a milestone that usually means more freedom and less restrictions.  I hit my day 100 on January 24th.  Not too much fanfare.  We went to watch Peyton vanquish the Patriots at the house of some good friends.  They had some decorations and cupcakes.  I also got to wear some orange beads, but I won’t tell you how I earned them.

Goodbye Man Boobs manzier
I can’t say that my man boobs were really big.  But still, they were there.  Jiggling a bit when I’d run for the ice cream truck or dance to Shake it Off.  I’m now down to 182 pounds (started around 245) and parts of me are disappearing.  The man boobs didn’t go right away, but I’d say they’re gone now.  It’s actually a bit weird to see my belly gone as well.  I used to be able to stick it out far in a fit of pretend pregnancy, but now it’s gone.  Not 6 pack of abs gone, but still, it’s not there.  My weight has seem to level out in the low 180’s.  Dr. Nelson isn’t worried about the weight loss, but wanted to make sure it leveled out at some point.  Too bad I don’t still work at IUH.  They’d finally stop labeling me as obese and would be happy with my weight.

Catching Up with My Pal Bob IMG_5931
I didn’t see Dr. Nelson (aka Bob) for the past 3 weeks.  I came in for labs on 1/18 and 1/25, but no appointment with Bobbie.  I did get to see him on 2/1 and he said I was in the “sweet spot.”  Now he acknowledged the sweet spot isn’t necessarily sweet, but it’s a better spot to be in than the not so sweet spot.  He’s happy with my blood counts and overall health.  I’m also free to go out a bit more, but not to crowded places.  So going out to eat at prime hours is a no no, but sneaking in around 2p or 3p when it isn’t busy is allowed.  Granted I don’t know if my stomach could handle a big restaurant meal, but it’s good to have options.

I’m Speckled
I’ve been flirting with GVH for awhile now (for those with memory issues, GVH is when the donor’s cells attack my body).  No official diagnosis, but a lot of “that might be GVH.”  Well at my appointment on 2/1, I showed off my arms and chest which have diffuse red spots all over them.  Yep, I was told, that is definitely GVH.  Now GVH isn’t something to be messed with.  You might remember way back when I mentioned Dr. Nelson said GVH can be deadly.  However the good news about having GVH is that it means the donor cells should also be attacking any leukemia that was left over.  Having GVH reduces my risk of relapse by 50%.  I’ll take that 50% for a little bit of discomfort any day.  Now the thing is to watch the GVH and make sure it doesn’t progress.  It would suck to beat cancer twice and die of a rash.

Bone Marrow Aspiration midazolam_med-2
I had a pre-planned BMA on 2/1.  This was my 7th and thankfully best BMA to date.  The first 6 were at the hands of Dr. Cripe.  Dr. Cripe doesn’t use sedation for BMA’s.  I think because it’s “only” temporary pain and he’s so busy it would mess with his schedule to use sedation.  And in Dr. Cripe’s defense, he numbed me up pretty good.  With that said, sedation is the way I’m going from here on out.  The sweet cocktail of Fentenyl and Versed allowed me to be awake, but I don’t remember a dang thing.  I don’t even remember checking out and walking to the car, but apparently I did both just fine.  This BMA will be used to confirm my bone marrow is still healthy and to see how many new blood cells belong to my donor instead of me.  The goal is 100% donor cells, but when that happens varies.

And the Powerball Numbers Are:
I hate it when my platelets drop.  Hate Hate Hate it.  Low platelets was an indication of my relapse.  Granted my platelets have always been low since my original diagnosis, but it just bothers me when they are under 100.

1/11/15  WBC 2.9, Hemoglobin 12.7, Platelets 116
1/18/15  WBC 2.8, Hemoglobin 11.3, Platelets 99 (boooooooooo)
1/25/15  WBC 2.3, Hemoglobin 11.8, Platelets 106
2/01/15  WBC 2.5, Hemoglobin 12.9, Platelets 134

A Duck Dynasty Prayer
Thank you God for Day +100, the says since and the future days to come.  Thank you for a pain free BMA and great doctors.  As the storm subside God, don’t let me forget what you’ve done for me.  Don’t let me get distracted by worldly things.  Help me to remember how you are always by my side (but preferably without giving me any more cancer).  Thank you God for my walk down the road to recovery.  Thank you for another day.

17 thoughts on “100 Days and Other Exciting News

  1. I know I “speak” for others when I say thank you Rob for posting. It is always so enlightening to read your updates that relay your thoughts in a way that I can comprehend much, much better! Your pix is awesome; thank you for posting it, as well. Your prayer is definitely the same prayer I say every day, over and over, and over again. I have learned so many lessons on this journey, and I pray I never forget the importance of humility. Love you so much!!! Mom

    (loved the reference to Dr. Nelson—-“Bobbie”) 🙂

    Liked by 3 people

    1. Great report…if it makes you feelany better you still have more platelets than I do. I did come up from 108 to 123 at last check in January.

      Love you kiddo. Keep up the fight. You are very blessed .
      Love, Aunt Liz

      Liked by 2 people

  2. Very excited to here this Rob. So glad your recovery continues. Thank you for posting. We pray for you daily and often wonder how you are feeling. Great to get this post. To God be the glory!

    Liked by 1 person

  3. Rob – You are looking great in your picture – healthy and relaxed, as if you had just come back from a workout at the gym. Your frame of mind sounds great, too.
    Keep up the good work!
    .
    “This is the LORD’s doing; it is marvelous in our eyes.
    This is the day which the LORD has made; let us rejoice and be glad in it. ”
    Psalm 118:23-24

    Love, Uncle Claude

    Liked by 2 people

  4. So, Rob, here is your Catholic Christian old lady praying for you everyday on her rosary beads. You are an inspiration to all of us of what is WALKING THE TOUGH WALK AND FIGHTING THE GOOD FIGHT. And the suffering that you are enduring when united with the suffering of Christ in His passion, well, that’s a pretty powerful thing in this world today that is in need of prayer!
    Del

    Liked by 1 person

  5. Rob, you look great. That’s a good weight for you. So good to hear you are doing well. Praying you continue to progress to total healing. Much love to you and your family.

    Liked by 1 person

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