Still Working on It

We're doing well in our corner of the world.  The kids still have about 2 weeks left of school.  We are all excited for summer.

 I'm still grappling with GVH issues.  It is affecting about 90% of my skin.  It's not painful.  It affects the pigment, making my skin blotchy. It feels tight and itchy across my back.  This, combined with the meds I'm on and the total body irradiation I had last year in prep for the transplant, makes it necessary for me to be VERY careful in the sun.  The sores in my mouth have not improved.  I've been on Prednisone since...oh, March? Since it hasn't helped, and has some pretty significant short and long-term side effects, they've been tapering me off of it.  2 weeks ago they added another immunosuppressant to my regimen in hopes of nipping the gvh.  So, I'm on Tacrolimus and Cellcept (the immunosuppressants), Prednisone, Magnesium (the immunosuppressants are magnesium depleting, and if I don't take it my joints get cramped and lock up), as well as the antibiotic, antiviral, and antifungal.

A couple of weeks ago I cam down with some nasty bug that knocked me out for 3 days.  Cory took time off of work and stayed home to help.  I was so grateful he was able to do that.  The burden he has had to shoulder through all of this is no small thing.  He administered a Priesthood blessing to me at that time, and I was counseled to be patient and to rest more.  I have gotten back to trying to nap a little every day, and Cory has been really mindful of helping me get the rest I need. I think between the transplant itself and the gvh, plus all the meds, my energy has taken a little dip.  Well, and my counts are a little low.  My platelets took a dive and my hemoglobin is also running low.  I am frustrated with my doctor.  I like the Nurse Practitioner, but the doctor is not my favorite.  I've had such incredible doctors up to this point -- my DC Oncologist, Dr. El-Shami, and the team at Huntsman in SLC (Dr. Hildebrandt and Teresa, the Nurse Practioner) -- so the standard has been set high.

BUT, overall, I'm doing well (I was able to recover from whatever bug I got without complications, so kudos to my baby immune system!) and the kids and Cory are, too.

My wife had Leukemia?!

No breaking news here - just one of those days where it hits me that my wife actually had Leukemia.  I was sitting here getting ready to send an email out to a bunch of bakers (people I work with in the industry) about an arcane labor issue and I got an automated call from her doctor to remind her that she has an appointment next Monday.  The caller ID only says "Cancer DR" and the appointment happens to be on May 5th, which is her birthday.  I sarcastically thought to myself, "Yay!  She gets to go to the cancer doctor on her birthday"...but you know what, it's better than the alternative.  She gets to go to her doctor on her birthday because she survived!  So yeah, it is something to be excited about.  :)

We still have a long road ahead, and while she is still having to take a ton of medications, she is getting better every day.  So we'll take it, and be excited to celebrate her 35th birthday next week!

Cory

We're Still Here

Pardon the silence on the blog...I attribute it to the fact that life is in many ways back to normal.  We are so grateful for the progress I've made and the blessings we've seen.  Overall, things are good.  I'm still grappling with graft vs host.  The oral gvh has been a buggar, so in addition to keeping me on a higher dose of the immunosuppressant, they put me on a steroid a couple of weeks ago.  Hopefully this can nip it.  Fortunately, my liver continues to look good.  I'm mainly dealing with skin, eye, and oral gvh, with the oral being the most problematic.  Since I'm immunosuppressed from both the Tacrolimus (the medicine) and the steroid, I'm still on all my anti's (antibiotic, antifungal, antiviral).  I probably won't get off them all for a couple more months until we make sure this gvh is under control, and I continue to see the transplant doctor about every 2 weeks. I also still have double vision from the surgery last year.  My eye muscles and nerves are healthy, it's now a matter of retraining my brain.  I use my prism glasses to drive and do things that require me to not see double.  But, I could have completely lost sight in that right eye, so I'll take it.  I'm confident that we'll figure out this double vision stuff.

I'm back in life, though.  I don't wear my mask anymore and I go anywhere in public, being careful as we all should to wash my hands and not touch my face.  I don't take naps every day.  8 months post- transplant, we feel very grateful to be where we are.  In fact, we recently surprised the kids with a spring break trip to the beach in St. Augustine, FL.  It was marvelous. We had so much fun together and enjoyed some time to reconnect and rejuvenate.  We feel very blessed.  Thank you always for your continued prayers and love.

Happy Anniversary

A year ago today I got "the call".  That call you wonder how you would react to if you were ever on the receiving end.  It was Sunday evening and Cory had left for the airport maybe 2-3 hours before the phone rang.  He was on his way to a conference in Phoenix.  My mom was with us, as I was still recovering from the hospitalization and surgeries.  Gabey and Mack were watching Veggie Tales, and Lucas and I had just set up to play "Life" when the phone rang.  I vividly remember the rest of that night and the next few days...surreal.  Very surreal.

I'm still grappling with graft vs host issues.  Increasing my immunosuppressant drugs to stifle my donor cells has helped.  My liver is looking much better.  I still have some slight skin and mouth issues.  The doctor told me I will most likely not even start tapering off the meds for another 3 months.  I might have almost cried when she told me that...but I held it together.  Now, I'm just accepting it as part of the journey.  And I'm feeling pretty good overall, so I can't complain.  I don't even need a nap every day.  That is something.  My family and I are on a more personal part of this journey now.  I thought we did the hard stuff already, but I think emotionally and spiritually we are (I am) at a truly critical point.  I am learning what the Atonement of Jesus Christ really means for me and my family.  It's been a turmoil of emotions and feelings over the last little bit that I never would have imagined.  Perhaps someday I'll share, in hopes of helping someone else.

Hair growth is coming along nicely.  I'm not really one for "selfies", but I'll get my kids in a pic with me and post it.  Clara and I are head to head (no pun intended) to grow hair.  She's got a better mullet going on than I do, though.

Good News

My liver enzymes are going down.  We are very glad to hear this!  It looks like increasing my immunosuppressant is helping.  Still treating the other stuff.  Grateful the liver is looking better and grateful for your prayers.

GVH.

No more question mark.  They're officially calling it.  My liver enzymes continue to rise, which, along with the symptoms I've been developing over the last month or so, indicates graft vs host (gvh).  It's affecting my skin, my eyes (discharge), and my mouth (dry mouth plus sores). Right now, they want to control the symptoms. They've increased my immunosuppressant dose.  I'm supposed to wear sunblock every day, because even walking to my car exposes my skin to the sun, which can aggravate the gvh.  I'm using a topical steroid on my face (it is red and peely -- truly like a bad sunburn that won't heal), and OTC things for my eyes and mouth.  If my liver enzymes jump really high, they'll put me on an oral steroid.  I go back Tuesday to check again.  They're keeping a close eye on me. As far as how I feel, mostly annoyed by my eyes (stuck shut every night and goopy all day), a little difficult to eat with the mouth, and my face feels really hot.  But, I'm always cold, so maybe a hot face isn't so bad.  Mostly, I feel pretty run down.

GVH?

I may be having some graft vs. host (gvh) symptoms.  I went to the doctor last week and showed him my "rosy" complexion.  Rosy may be somewhat of a euphemism.  My face looks like, as he put it, I spent a week in Florida without sunscreen.  The skin on my trunk is kind of peely, too.  Add to those my dry mouth (which turned into a lovely thrush infection), and the docs think we're looking at some gvh.  I go back on Tuesday to have another look at me.  They were going to start tapering my immunosuppressants, but with things as they are, he left me on the current dose.  If it is gvh, tapering would only give my new immune system more room to recognize my body is foreign and attack all the more. I just need to remind my new cells I am their new home.  Come on in and unpack, friends, because this is your new life.  No need to fight. Let's just get  along.  Glad to have you on board.

  We'll see what happens after Tuesday.