What a week, Day 233

It’s been a kind-of weird week around here and I’m not even referring to the ridiculous cold and blizzard that shut down I-70 between St Louis and KC! It’s been good in that I continue to feel better and stronger every day! I still have a long crawl up the hill, but it’s so nice to see the continued improvement. My labs weren’t the best this week. My liver isn’t as angry but my white count stays low and my platelets dropped again :( It’s only been a week since we stopped the medicine that was felt to be the culprit and Dr. Vose put another one “on hold” as of today so we’ll recheck labs on Friday and see where I stand. Presuming we don’t get more snow, I’ll be going back to Omaha next Monday. The hard part of this week is that I learned that a fellow patient who went through a stem cell transplant with me last summer passed away. I only knew her for a short time but her faith, drive and fight made such an impact on us. I know that she is in such a better place now and am so glad that her suffering is done, but just wish I could know a little more of “the greater plan”. It’s become so clear, that without a belief in Christ, suffering would make no sense. Even with faith, I guess you can’t “make sense” of it, but at least I know that there is a plan and I’m just not smart enough to interpret all the pieces. We beg and plead for things that don’t happen even though God says, “ask and you shall receive”, but we remove that from context. When a child begs for something that isn’t good for them, parents have a responsibility to say “no” to protect them. The child can’t understand that, but it’s for their own good and one day they will understand if they don’t get jaded by the refusal.

In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trails. These have come so that your faith-of greater worth than gold, which perishes even though refined by fire-may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. 1 Peter 1:6-7

Another "anniversary"

One year ago I got the call with the HSTL diagnosis, is it really possible?

Fear knocked at the door. Faith answered. There was no one there.

Contentment and peace

Sorry for the delay in the update this week but I just couldn’t think of what to say yesterday. For the first time during this whole ordeal, I had a day of uncertainty. I didn’t like it. The feeling of peace through all of this has been so consistent and such a blessing for me and the inkling of that slipping was disturbing. I really can’t put into words what I was feeling, but I’m glad that it’s gone today. I still have no doubts that God is carrying me through all of this, that He has a plan, that He will give wisdom to Dr Vose and that it will all be for His glory.
Here’s the down and dirty as far as actual “health” stuff. I’m feeling better and stronger each day. It is definitely a slow crawl up the hill, but I can see progress! (This morning I could actually see my ankle bones – didn’t last long but at least I know they’re still there :) My appetite is good and I’m tolerating a few more foods. My electrolytes looked better this week but not perfect, but my white blood cells and platelets fell again this week. That was alarming to Dr. Vose so she stopped my anti-rejection medicine. So, as of today, other than the steroids that they’re continuing to taper, I’m not officially on anything to stop GVHD. This is where I really need your prayers – please pray that I can continue to have peace about this decision, that my blood counts will improve and that the GVHD will not come back! God is good and I know that He is in control of this one.

One year ago today

It's hard to believe that it's been a year since my life started to spin out of control and this crazy journey began. As you'll remember, symptoms started long before, but it was one year ago today that my spleen was removed allowing the doctors to finally make the diagnosis of hepatosplenic t-cell lymphoma. So much has changed since then, it doesn't even seem possible. I miss not being able to do what I want to do, when I want to do it, having the energy to “go” 7 days a week, not having to worry about what I touched and who touched it before me, being able to fully serve the patients I've grown to love. But through it all, the support, love and concern from all of you has been beyond words. There's so much for which to be thankful: my greater appreciation for family and friends, my renewed amazement at the power of prayer, my ability to accept help and share struggles, being able to wake up each morning content and grateful for another day, a renewed appreciation for what's important and what's really not, and a strengthened faith and trust in God's ultimate plan. I still believe that God has a plan for my future and that plan involves me getting back on all the fields I love – full time. Just not sure what will happen between now and then.

For every action…

Yesterday Dad and I headed back to Omaha for my recheck with Dr. Vose. The GVHD continues to improve which is a huge blessing and they’ve said that I can slowly start to increase the variety in my diet as long as it’s tolerated. I’m pretty gun-shy so I’m sure it will take me a while to stray outside the box – even though pizza and Mexican are sounding REALLY good. Overall, the visit went well, but unfortunately you can’t expect to take a bunch of powerful drugs and not expect some side effects, and my labs are reflecting that. My platelets are down, white count is falling, liver is angry and triglycerides are running away with the farm. Dr Vose would love to be able to stop the steroids, the new anti-rejection meds…, but that’s not an option so we’re going to have to deal with the side effects, watch closely and wean as quickly and responsibly as tolerated. Probably the best news of the day is that they feel comfortable monitoring me from KC for a while so as long as things go well, I shouldn’t have to go back to Omaha until February! Praise God! I’ll try to send updates every few days, if you don’t hear, that’s a good thing – means that I’m still getting stronger, bit by bit!
"Fear not, for I am with you, be not dsmayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my victorious right hand." ~Isaiah 41:10

Not my will, but Yours

It's Sunday afternoon and I had a little time (since the Chiefs obviously aren't playing) so thought I'd send an update. Plus, last night I realized that I have failed to provide much detail as to what exactly/medically happened over the past 3 weeks and for those interested, I'll try to give a brief, yet honest overview. As far as how I feel, it's still 1 day at a time, but what's new? I'm not regressing which is good. Last week I made enough progress that I didn't have to travel back to Omaha on Friday. Next appt is Tuesday and I pray that if things still appear stable, they might let me go to every other week visits! I've returned to work which is so good for my mental health. There's really nothing to benefit by sitting at home so I need to be productive (or at least feel that I am). I was able to see friends this weekend, get to church... I'm still very weak, definitely the worst it's ever been. I'm impatient to regain the strength, but decided this morning that if God can use 5 loaves and 2 fish to feed thousands, He can use an atrophied body to accomplish His ends. I just need to be open to His plan and realize that it's His plan, not mine.

Now for the background on what happened for those who might be confused. GVHD is when the transplanted stem cells react against the existing system - recognizing it as foreign and attacking it. The most serious reactions typically happen within the first 100 days and are referred to as "acute GVHD". The rejection can happen very fast thus why we had to stay in Omaha for 100 days last summer. After the 100 day mark GVHD usually takes on what they call a chronic form. It can affect your skin or your eyes or various other organs but is typically more of a nuisance with small setbacks. Right before Christmas, I started to have some intestinal symptoms which is when they decided to start the testing to see what was going on. What they found was acute, stage IV GVHD of my intestinal tract. It hit VERY fast - basically stripping away the entire lining of my gut within a week. The problem with not having a lining to your intestine is that you can't absorb any nutrients. No intestine, no nutrients, no healing... I'm sure you can see the problem. The best the doctors can do is try to "rest" your gut, decrease irritation so that hopefully any tissue trying to regrow won't be washed away, and give you steroids to try and decrease the inflammation/slow the GVHD. But steroids aren't a miracle cure and can slow the actual healing. (not to mention a host of other unpleasant side effects) That's why this has been so precarious and so serious. There's isn't a "cure" - they do the best they can and then watch and wait. Also why they've watched my diet so closely - all the good, high calorie, fattening foods that I'm so hungry for would risk ruining what intestinal regrowth has occurred. I have to baby it along, not giving it anything that might reirritate it. Every couple days I try to reintroduce something, but if it doesn't settle well, I have to step back down. So, I hope that helps for anyone that didn't really understand what happened and will explain why it's taking so long to get back on my feet and why the doctors are so guarded.

Time flies when you're having fun ;)

Wow, this time has slipped away so I'll have to be brief today. Things continue to look upward. A little bump on Wednesday but definite improvement yesterday and today when it comes to the gut. Still in definite need of strength and decreased swelling but we'll just have to wait. For now I am happy with the progress I can see! They're going to continue to wean my steroids and I'll go back to Omaha on Tuesday to see Dr. Vose.
"How excellent [is] thy lovingkindness, O God! therefore the children of men put their trust under the shadow of thy wings." ~ Psalms 36:7