Day +100 
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 
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 
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 
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.

Still on Track 
I had visits with Dr. Nelson on 12/28 and 1/11.  The days in between appointments were a little dicey, but the appointments themselves went fine.  After my 12/28 appointment, I started having stomach issues.  I threw up for 3 days straight and had corresponding issues on the southern end.  I had to change my diet to really basic things like cheerios, apple sauce, potatoes, etc.  The bland diet helped and I only threw up one more time.  Dr. Nelson thinks it could have been a continuation of the virus I had or some GVH that improved because we increased my dose of both immuno-suppressants.

BMA, I’m on my Way!
As part of this process, I get a bone marrow aspiration near day 100.  My aspiration is scheduled for 2/1.  The purpose is 2 fold.  First, to make sure I don’t have any signs of Leukemia and 2nd to see how well my donor cells have grafted.  Ideally we’d see that the blood cells are 100% from the donor, although sometimes that doesn’t happen until later.  It will also be interesting to see if my blood type has flipped to A-.  That is something that happens over time and I haven’t had any blood typing recently.

Until Then
I don’t have to see Dr. Nelson again until the BMA.  I’ll go in for blood draws the next 2 weeks, but won’t actually meet with him.  He said I continue to do well and am in the top tier of recovery.  He also said don’t get to anxious to be ahead of where I’m at.  Just let my body heal as it needs to.  I’ll admit that is hard some days.  Some days I feel well enough to jump back into “normal” life.  Then I throw up for 3 days and realize maybe not quite yet…

And the Powerball Numbers are:
Nothing too exciting to report.  My labs continue to fluctuate, which is what they are supposed to be doing.

1/11/15: WBC 2.9, Hemoglobin 12.3, Platelets 116

The Tacro Tremor
I have developed an annoying side effect.  Tremors is one issue that can be experienced when taking Tacrolimus.  My tremors seem to act up at inopportune times.  Forget about texting or something that requires fine motor skills.  Heck, even forking my dinner into my mouth is a little tricky.  One day we’ll reduce the tacro and one day the tremors will subside, but until then if you get any weird messages from me, just chalk it up to the tremors.

A Duck Dynasty Prayer
God, today I am reminded that not everyone beats cancer.  Even with the backing of prayer and all the doctors and nurses you need, not everyone is cured.  I thank you for the 3+ years of life I’ve had since my original diagnosis.  I pray that you be with those recovering along side me.  I also pray that you be with the families of those who have passed on.  Especially tonight the family of Andrew Smith.  Thank you got for the will to fight.  Thank you for the hope you provide.  Thank you for the assurance of eternal life.  Thank you for another day.

My Appointment on Monday 12/14
I kept my weekly date with Dr. Nelson on the 14th.  He was pleased with my progress and happy to see that the cold I had the previous week was getting better.  He said this is a sign of a healthy graft as my counts are stable and I didn’t end up in the hospital because of the cold.  Apparently around 50% of people in my situation end up admitted.

The other big news of the visit is that I graduated from having weekly appointments to only having to go every other week.  This helps a lot as I don’t have to get my butt to clinic every week.  It will also trim the costs a little bit as my OOP resets on 1/1.

Lindsey Down Lindsey Down!
The other thing that happened on 12/14 is that Lindsey became sick.  Seeing as she’s the one who holds this whole thing together, this wasn’t a good thing.  She stayed quarantined in an extra bedroom for the next day and a half.  Thankfully the grandmas were able to help out, as I wasn’t going to make it all day.  The sickness lingered a bit, but thankfully she was able to be out of the bedroom on Wednesday 12/16.

Continue reading Ups and Downs