Blog Entries

Relapsiversary

1 Year Later first-birthday-car-cake2839
On June 3, 2015 I found out I had relapsed Acute Lymphoblastic Leukemia.  It’s interesting to think about everything that was going on 1 year ago.  Friday morning I was reliving the timeline of going to see Dr. Cripe, finding out I had relapsed, contacting work, calling family and preparing to be admitted on the 4th.  Last year for dinner on June 3rd we ate at Chicago’s pizza (one of our fav spots) knowing that the next morning I was going to be admitted for chemo and had a battle ahead.  This year for dinner on June 3rd we once again headed to Chicago’s pizza but this time to celebrate.  There would be no waking up to chemo on June 4th this year.  There would be sleeping in and plenty of play time with the kids.

A relapsiversary isn’t something you celebrate because of the cancer that caused it to be necessary.  However you do celebrate a relapsiversary because it is a sign you’ve survived for another year.  Here’s to no more relapses, but plenty of more relapsiversaries in my life.

Continue reading Relapsiversary

Roo Teen

Closer to Normal hello-my-name-is-normal
Last summer I wrote about how I missed my Monday routine.  Taking the kids to the sitter’s, going to work, picking the kids back up, spending time with them and putting them to bed.  All while Lindsey worked.  While I’m not quite back to that normal yet, things are most definitely progressing in the right direction.

On Monday I began to work in the hc1 office again.  I’m not officially full time yet, but I am planning on being so in June.  It’s great to get back to meaningful work and to exercise my mind.  It’s also wonderful to be around a smart and dedicated group of people (and Brian and Corry too).  I feel like a new employee all over again, but I plan to get up to speed quickly.  As my time at work begins to wind up, Lindsey’s need to work part-time and carry benefits will wind down.  Yes, we are most definitely making progress towards normal.

Continue reading Roo Teen

Where’s Robdo

Same ‘ol Same ‘ol Waldo
The past 6 weeks can really be summed up as the same old thing.  Go to the doctor. Adjust the meds.  Deal with the bad days.  Be thankful for the good days. Not too much exciting has happened, which is good.  Here are updates on the key points.

Scratch That Itch
One of the side effects that has gotten a little worse since I’ve written last is my skin rash.  Skin is a common place for GVH to show.  As a recap, GVH is graft vs host disease.  This is where the donor cells attack my cells since my cells are foreign to the donor’s cells.  I’ve been told that in severe cases, skin can actually sluff off the body when touched.  Thankfully my issues are mostly dry flaky skin (mostly on my face) and a reddish itchy rash on my body.  We were able to take care of the itching with a prescription strength anti-histamine. Thankfully it doesn’t put me to sleep, although since it is also used to treat high anxiety, I feel quite relaxed all the time.

The dry skin is just there.  No lotion really helps because the skin cells themselves are getting killed.  When I look down at the floor and scratch my forehead, all the skin flakes falling off makes it look like it’s snowing.  I am a bit self conscious about it at times, but at the same time I also forget about the issue since I can’t see my own forehead most of the time.

Continue reading Where’s Robdo

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.

Time for an Update

Still on Track 2802554397_b45da1a395
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.