Blog Entries

The Results Are In

But First a Word From Our Sponsor 

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A big thank  you and shout out to my hand model.  Look for him on TV.  He’s going places.

Well, it’s not really a sponsor, but I want to put a plug in for 2 things.  When I was first diagnosed in 2012,  some friends put together a fundraiser using robstrong bracelets.  I know it’s a little late in the fight, but thanks to all the generous donations we’ve received, I have some more robstrong bracelets to be giving away free of charge.  So if you’d like to have/wear a robstrong bracelet, please use the link below.  The only thing you need to cover is shipping (payable via Paypal).  The bracelets themselves are free and a thank you from Lindsey and I for all your support.  A special thank you also goes out to formstack.com for supporting me and allow me to use this spectacular and easy to build form for free.

Order Your Robstrong Bracelet

Plug 2: Raccoon Run at Camp Tecumseh 2016-02-15_2126
If you know me, you know that Camp Tecumseh is near and dear to my heart.  I was a camper there in the 80’s and a counselor in the 90’s.  I now serve as Vice President on the Board of Directors.

Camp (located near Brookston, IN) is hosting it’s first annual 5k.  The 5k will be used to help raise money for Camp related causes.  This year that cause is me.  The proceeds from the race will go towards medical bills in 2016 now that our out of pocket has reset.  Beyond that though, it’s a chance to take a run/walk through a beautiful camp and meet wonderful people.  If you’d like to sign up for the first annual Running With the Raccoons, you can do so at this link.  A t-shirt and goodie bag is included in the registration.

Sign Up for the 5k

And Now for the Results
Today was Dr. Nelson day.  It has been 2 weeks since my last appointment.  As you’ll recall, I heard that my BMA showed no abnormalities (aka, I’m still in remission).  Today I found out what percentage of my blood is from my donor.  I’m not quite 100% donor, but I’m close.  I’m over 99% donor and less than 1% me (at least in my blood).  Dr. Nelson said that was a good result at this point and we will do another BMA in 2-3 months to see if I am 100% donor.  His only concern would have been if I was 4%-5% me still.  That’s because my blood can be leukemic.  We did this whole damn thing to get rid of the leukemia, so waving bye bye to my cells is a good thing.

Post Results Puke
It’s funny because this morning I felt better than I have in a long time.  This afternoon was a different story.  That’s how this SCT ride goes.  I’ve had a slight cold and for whatever reason colds seem to mess with my GI tract.  This time is no different.  I’ve had an afternoon filled with nausea, diarrhea, and puking.  Even had to pull off to the side of the road and puke because there was no delaying the upchuck.  I’ve got 2 different anti-nausea meds in me and some Immodium.  We’ll see if it does the trick.

A Duck Dynasty Prayer
God, thank you for the encouraging results.  Thank you for my donor and the life he provided.  I don’t know where the road will curve or what obstacles lie ahead, but I do know that you are with me each step of the way.  Good or bad, you are there and I praise you in both those times.  Thank you for every step of progress I’ve made.  Thank you for another day.

The Results are In!

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The preliminary results for my Bone Marrow Aspiration are in.  The bone marrow shows no signs of abnormalities…aka I’m still in remission.  It’s definitely a relief to hear the “all clear”.  Next week I’ll get results on the make up of my blood.  We want to see 100% donor cells and no more Rob (aka potentially cancerous) cells.  Until then, have a great weekend!

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.