…on the heals of a stressful week. But I’ll talk about that in a bit.
For the first time since early April, April 8 to be specific
because it was Easter Sunday, we traveled back to Oletha for Paul’s 53rd
birthday to spend a couple days in the place that is probably closest to his
heart. He could have gone up
during the summer without me, but he didn’t. Once I was released to go home, they said I was also
released to go to the country…as long as we had a plan in case of
emergency. Paul always has a plan.
We relaxed, 4-wheeled around the property, hiked a little
down the creek (as much as I could), enjoyed the breeze on the porch, enjoyed
the company of our best friends, enjoyed food simply cooked, drank plenty of
water, and took my nap. Simple
pleasures. And I still did what
I’m supposed to do. It was good to
get away.
The previous week had been a bit rough. Headaches and tummy aches had been on
the increase. Plus we had some
discouraging news at the doctor’s office on Wednesday. The final results from the last bone
marrow biopsy had finally come in and while the donor cells were 100% in one
type of cell, the T-cells which had been up in the high 90% last month were
down to 66% this month. My cells
were trying to take over. Who
would think?!
To try and remedy this, the first step was to take me off
the prednisone immediately.
Done. The next step is to
slowly reduce my immuno-suppressant drugs (Tacro) starting this Wednesday and
either weekly or biweekly thereafter, testing weekly. That’s a little scary because it is also what keeps my GVHD
down, so I can possibly expect more issues with my stomach. In fact, I have already had more issues just getting off the
prednisone. This will be a
balancing act to see if the donor cells will ramp up and become more aggressive
without the GVHD becoming too bad. :(
The next part of the conversation took me several days to
digest. I’m glad Paul was with me
or this post would never have gotten written. He said that I had the “deer in the headlights” look. I had planned on driving myself for the
first time that day, but because of the headaches he decided to take the day
off and take me. I didn’t even
know he had done that until the night before. Like I said, he always has a plan.
It’s like God just nudges him at the right time. God knew he needed to be there that
day.
If the medication plan doesn’t work over time, the second
option is called DLI, Donor Lymphocyte Infusion. This is where they would ask my donor to re-donate (ugh) and
they would infuse me with only his lymphocytes via IV. No chemotherapy would be needed.
If that didn’t work or wasn’t available, then option three
is chemotherapy. I responded well
to the first round. While it
wasn’t pleasant, it was effective.
And now that I am no longer 17p deleted, I do not have that playing
against me.
So after everything having gone so well, it was a little
discouraging to hear this news.
But the medication option may work just fine. It will just take some time to see. Please pray that we continue on the
positive path that we have been on so far.
My main responsibilities are to drink inordinate amounts of
water, get plenty of rest, and trust God.
As I looked back to my devotion on the day of my doctor
visit, I saw how God once again was there encouraging me. His timing is always perfect.
Trust Me, and don’t be
afraid. I want you to view trials
as exercises designed to develop your trust muscles. We live in the midst of spiritual battles, and fear is one
of Satan’s favorite weapons. When
you start to feel afraid, affirm your trust in Me. Refresh yourself in My Holy presence. Sing praises to Me and My Face will
shine radiantly upon you.
Isaiah 12:2 “Surely God is my salvation; I will
trust and not be afraid. The Lord,
the Lord, is my strength and my song, He has become my salvation.”
TAMARA, THANK YOU FOR YOUR POSTS. IT IS A BLESSING TO BE ABLE TO PRAY FOR YOU AND YOUR FAMILY. GOD BLESS YOU AND YOUR SWEET HUSBAND!
ReplyDeleteLOVE, JUDY & JIM FOSTER
P.S. I COMMENTED ON YOUR LAST POST BUT NOTICED YOU DID NOT RECEIVE THE COMMENT. I HAD SHARED HOW MUCH YOUR DEVOTIONAL HAD MEANT TO ME. THANK YOU!
Thank you, Judy. You have been a joyful encouragement to me for many years. An example I always wanted to follow.
ReplyDeleteI'm going to tell Jerry to read your blog. I haven't had headache and nausea problems, but he did. He also had his engraftment stall, though it didn't back up as much as yours. His reversion was only 2%, but they were talking about a leukocyte infusion with him, too. (He didn't need the infusion. Backing off on meds worked for him.)
ReplyDeleteAlso, I had a terrible time trying to come off prednisone. I was exhausted, didn't digest anything well, and had the runs a lot. When I went back up to 10mg, I got much, much better. On the other hand, weaning off my other immunosuppressive (CellCept, I think) had no effect on me whatsoever. I suspect I could wean off Tacrolimus, too, (and stop trembling so much!).
ReplyDeleteI tell you that to give you some hope that getting off the Tacro may not be the problem you're fearing. I'm surprised you could just drop the steroid, as it protected me from GVH of the gut.
Paul, thank you for your input. Stopping the steroid has been a bear! I am encouraged that weaning off the Tacro may not be as scary as it seems. I am in the bathroom a lot! I can't keep any weight on. My hair is falling out by the handfuls. Has been for a couple months now, but it is getting worse. Fortunately I had a lot to start with. Not so much as we go. It's been a little scary, but we're just taking a day at a time. I'm having to go back in to get IV fluids as I cannot drink enough to keep my creatinine levels where they need to be. I don't miss my CVC but too bad I don't have it now. :/ I think I'd still rather be stuck each time. My trembling is less since I've backed down on the Tacro. It was really bad there for a while. Thanks for sharing. I'm nervous about the GVH of the gut, but the doc is more nervous about my cells. So we'll see.
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