Day 76

Things look good.  I had a bone marrow biopsy a couple of weeks ago.  While 97% of my total blood production is donor blood, the cancer busting T-cells are only 80% donor.  They would like those to be closer to 100% by day 100.  To help that along, they tapered down the dose a little of the immunosuppressant I'm currently on.  The idea is, as the donor cells have a little more "freedom" without all the oppression (this sounds like a political post) from the anti-rejection drugs, they can do their job and totally take over my blood production.  That also means we have to look more closely for signs of graft vs host, but so far things look good.

I'm gaining my energy and strength back.  My appetite is still not awesome, but with time I'm sure it will get better.  I think it's a combination of meds and stress.  I'm trying to do more "normal" things while still being cautious about overexerting and germ exposure.  I've been told it takes about a year from transplant to feel 100% again.

Next week, I will start my 100-day work up. This includes an MRI, pulmonary function test, labs, eye exam, ENT visit, etc. I have my final appointment with the good doctors at Huntsman November 18.  They're going to transfer my care to a transplant team at George Washington, so I'll continue to follow-up in DC with them an my oncologist.  Cory's coming out to bring us home on November 22.

I've thought a lot lately about all the compensatory blessings we've seen this year.  I want it to be clear that we absolutely recognize how the Lord has blessed our family.  We have never felt abandoned.  At times, I have distanced myself.  But, when I bring myself back, always I see the Lord's hand in every detail of this year.

Sometimes, I Don't Feel so Heroic

It's been an interesting few weeks.  I wasn't feeling so positive and happy.  In fact, I was sending myself into a nice little depression.  My counts (platelets, hemoglobin, white blood cells) started dropping a few weeks ago.  Not completely unusual, as they can fluctuate as my bone marrow figures out whose blood it's making (mine? my brother's?). But I didn't feel well at all.  Besides being tired, I'd felt pretty good since coming home from the hospital. A few weeks ago, though, I crashed.  My hemoglobin got so low I needed a blood transfusion.  I hadn't needed that since a couple weeks before I was discharged.  My platelets were getting close to needing to be transfused.  And they had to figure out why.  I was at the clinic a lot.  And I was worried.  We changed some meds and got things rolling again.  Then I had some GI problems. Lovely.  Had to rule out graft  vs host, viruses, etc.  We got that figured out -- with some more meds -- and I was rolling again.  Physically, I was on a bit of a roller coaster.  Emotionally, I was pretty much on a continual downhill slope.  I knew it.  I knew I was feeling sorry for myself.  I knew I was depressed.  But I was sick of my family being split up, I was sick of feeling sick, I was sick of feeling fearful, I was sick of feeling guilty...I was done with this business.

So, where am I now?  Better.  Cory and my boys came to visit last week, which was wonderful.  And hard...because we had to say goodbye again. :) But, we're nearing the finish line.  We're more than halfway there (I think we're on Day 60 or so).  My counts took another small dip last week, but they changed some meds (again), and I'm confident they'll be fine.  They tested to see how much of my blood is still mine and how much is my brother's.  I'm 97% donor blood.  Good, but not quite good enough.  They don't want any of mine hanging out in there.  They're taking me off one of my immunosuppresants to see if that can help things along.  That will help out my immune system, but does mean we have to watch closely for signs of graft vs host.

I also had a visit with the cardiologist.  I'm still taking some meds for my racey heart.  He told me I have an electrical short in my heart; it's been there since I was born.  For some reason, it was triggered now.  So, I can take meds the rest of my life or have a procedure done in which they go through an artery in the leg to my heart and find the short.  Then, they fry it.  I actually know a couple people who have had it done.  For now, we'll wait.  I'm going to see how I do on meds and how it goes when life is a little more normal.

I did take a drive with my parents and babies to see the leaves in the mountains.  McKay was thrilled about the snow and had a snowball fight with Grandpa.

And, as I mentioned, everyone was reunited for a few days.  Since I am horrible at remembering to take pictures, this is about all I got of the week.

Clara being reintroduced to her brothers

Not even one picture of us all together!  Well, we know we were and that we were very happy to be so. :)

I talked with Cory, I talked with my parents, I talked with my Heavenly Father, and I pulled my head out and decided to get back in gear.  I had to make a choice.  I reminded myself of all the blessings we've seen and continue to see.  And we move forward.  My brother -- who knows a thing or two of adversity -- sent me a text:

"Stay loose and relaxed, everything is exactly right already."

Have I mentioned the amazing, supportive family I have?  And how they, along some dear friends, put together a 5k for us?  That's a post for another day.

Thank you always for the prayers and love.  We feel it.  Really.

“In my ninety-plus years, I have learned a secret. I have learned that when good men and good women face challenges with optimism, things will always work out! Truly, things always work out! Despite how difficult circumstances may look at the moment, those who have faith and move forward with a happy spirit will find that things always work out.” 

President Gordon B. Hinckley