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.

Luke, I am Your Shower shower
One downside of my skin rash is that it is exacerbated by hot water.  I love a nice long hot shower.  GVH does not.  If I take a hot shower, I’ll come out with bright red irritated skin.  Looks like a real bad sunburn.  Thus I’ve had to start taking lukewarm showers.  Definitely not as enjoyable, but not having a burning sensation afterwards seems to be worth it.

Some Like it Hot
The other main area showing signs of GVH is in my mouth.  I don’t have any open mouth sores or really bad mouth sores.  But I do have a lot of bumps on the top of my mouth that get irritated easily.  I can’t eat spicy foods or even foods you don’t think about being that spicy.  I had to stop using mint toothpaste because even the mint taste irritated my mouth.  Things like sausage or pepperoni can be too hot.  Salsa at restaurants that I used to eat with no problem are way too hot.  Breads with a hard crust or anything somewhat abrasive hurt my mouth as well.  I’ve learned to chew a lot more thoroughly and drink plenty of water to soften the food that I am about to swallow.

It’s Good to Have Issues
Seems strange, but it’s good that I have these skin and mouth issues.  When GVH occurs after transplant, it reduces the relapse rate by 50%.  GVH signifies that the donor’s immune system is attacking my cells.  The hope is that if there are any leukemia cells left, that the donor cells are attacking and killing those cells as well.  It’s because of this that we are letting the GVH run its course.  As Dr. Nelson put it, I have “Just the right amount of GVH.”  We could cure my rash and mouth issues with some steroids, but that would stop the GVH as well.  We are holding off on that to allow the GVH to work in my body.

Large Margelarge marge
Who doesn’t like a good Pee-Wee Herman reference?  I was using the restroom the other day, and since I was sans phone I was looking around a bit.  I looked down and noticed my boxers.  More specifically, I noticed the tag on my boxers.  The tag was missing a letter.  One I’ve know most of my life.  That letter is “X” as in the “XL” that used to be on all of my clothes.  I now just see a lonely “L” on most of the tags for the clothes I’ve purchased in the last few months.  My XL boxers simply fell to my ankles, so it was a necessity to get size large.  I also shared that I now wear 34 jeans, rather than the 38’s I’ve worn for the past 10+ years.  My weight now hovers around 180.  When it gets in the high 170’s I eat a bit more.  When it gets near 185, I eat a bit less.  Thankfully it’s usually in the lower range, so I indulge in things like a nightly ice cream sandwich or some Ben and Jerry’s Chocolate Fudge Brownie Ice Cream.  It’s a rough diet really.

I’m a Wiener wiener
Well, actually it should be spelled weaner.  I’ve been weaning off of my immunosuppressants for the last few weeks.  I’m completely off my Sirolimus and am down to 2 mg per day on the Tacrolimus (Started at 6 mg).  I go back to see Dr. Nelson on Monday and we may cut the Tacrolimus to zero.  If not, there definitely should be a reduction.  It’s nice to have fewer pills to take.

Eye Eye, Captain
For over a month now I’ve woken up with watery eyes in the morning and some crust in the corners.  My first thought was “crap, it’s pink eye”, but my eyes weren’t red and they definitely weren’t as matted as pink eye would typically do.  I just kind of dealt with it.  Itching my eyes some and blinking a lot.  When I saw Dr. Nelson a few weeks ago, he noticed something wrong with my left eye without me even saying anything.  He said to the fellow “that looks like…” and ended the sentence with a big word I didn’t catch.  He ordered an ophthalmology consult and off to the Glick Eye Institute I went.

The good news is that they Ophthalmologist didn’t see anything that would cause permanent damage.  Sometimes cataracts can occur post transplant.  However it seems GVH is impacting some of the glands that produce tears.  This is in turn making my eyes irritated from being dry.  We have tried some OTC eye drops in hopes of that that would solve the issue.  It’s a bit better, but not much.  The next step is Restasis, which are prescription strength eye drops.  With any luck, the eye drops will be a short term need.

Running With the Racoons
This past Sunday was the 5k race at Camp Tecumseh.  Thank you SO MUCH to everyone who was able to come out.  Believe it or not, I actually completed the entire course.  I walked most of it with my Nephew Cody, as well as Lindsey, her mom and the kids.  I know I haven’t walked that far in almost a year, but aside from sore muscles, I didn’t have any issues.  I’m very blessed to have supportive people in my life and support for camp.  I’m pleased to say that it looks like we’ve raised enough money to cover my remaining OOP this year and some of my anticipated medical expenses for next year!

A Duck Dynasty Prayer
Each day is a step.  Many days strung together show progress in my journey.  My current journey of ridding my body of cancer is coming to a close.  May my longer journey with you Lord continue for many many more years.  Thank you for the support we have received.  Thank you for the medical care we have received.   Thank you for the getting me through the lows and the highs.  Help me to not forget where I’ve come from.  Where you’ve taken me.  And where we still have to journey to.  Thank you for another day.

10 thoughts on “Where’s Robdo

  1. So grateful for your post!! It was absolutely amazing to complete a 5k with you this past Sunday– just think, in a little more than four short years, we will be completing that marathon together 😉in celebration of you being cured!

    I’m so proud of you and your will to fight so hard to beat leukemia a second time– you are an inspiration to everyone around you. Praying for you, everyday!
    Love,
    Michelle

    Liked by 3 people

  2. Rob, I’ve missed your undates and was grateful to get this today! Indeed, your faithfilled journey has been amazing! You inspire me with your courage and sense of humor in dealing with this. You are a winner! I continue to pray for you on my rosary daily. At our supper devotions, we pray for those with cancer and those who have BEATEN IT. So grateful you have BEATEN IT!
    Fight on, brave one!
    Delphine

    Liked by 1 person

  3. Psalm 77 (lucky #7, only twice!)
    .
    12 I will remember the deeds of the LORD; yes, your wonders of old I will remember.
    13 I will recite all your works; your exploits I will tell.
    14 Your way, O God, is holy; what god is as great as our God?
    15 You alone are the God who did wonders; among the peoples you revealed your might.
    16 With your arm you redeemed your people, the descendants of Jacob and Joseph.
    17 The waters saw you, God; the waters saw you and lashed about, trembled even to their depths.
    18 The clouds poured down their rains; the thunderheads rumbled; your arrows flashed back and forth.
    19 The thunder of your chariot wheels resounded; your lightning lit up the world; the earth trembled and quaked.
    20 Through the sea was your path; your way, through the mighty waters, though your footsteps were unseen.
    21 You led your people like a flock under the care of Moses and Aaron.
    .
    It’s nice to be on the other side of the Red Sea. Now you have to make your way through the Desert of Sin to the Promised Land.
    .
    Love, Uncle Claude

    Liked by 1 person

  4. I was so happy to see this new update! Congrats on the 5K! I can’t imagine the energy it took but you did it! KUDOS! I doubt I would make that walk. Love that things are on the good side of this journey for you! Keep up the good work and please keep up the updates so we all know what is happening!

    Liked by 1 person

  5. Rob
    I am so excited about how things are going for you. This is such great news. Congratulations and continue taking it one day at a time. You are an inspiration. We will continue praying for light side effects and wellness. Have a wonderful day!!
    Stephanie

    Liked by 1 person

  6. Wonderful Rob with a super post! I learned so much! Wish I could have completed the 5K with you; just walking to the starting line did me in 😀. It was glorious to be there with you, listen to your talk, and see you and everyone cross the finish line. What a great turnout for you and your family. Thank God for the positive course this journey is taking. Thank God for you my fantastic son! Love you!!!!

    Liked by 1 person

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