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

GVHD update

Well I'm back on the road, headed home from my latest trip to Omaha. Praise God the sun has been shining and the highways are clear. The visit was rather uneventful but optimistic that things are moving in the right direction. Some of my electrolytes are still a little off, definitely low on albumin which isn't helping the cankle problem, and the official pathology report showed not only GVHD but also a return of CMV. Despite still needing to regain a lot of strength, I feel that God has been healing the GVHD in my gut and have a peace about the direction in which I'm headed. For now we're going to proceed slowly, tapering steroids every 5-7 days, keeping a limited diet, allowing activities as tolerated and carefully monitoring symptoms. As long as there are no set-backs, I shouldn't have to return to Omaha until next week – Yea!
As always, thanks for your prayers and warm thoughts – more valuable than you know!

Day 3 at home

Wasn't really sure what to expect this weekend as progress was slow to non-existent last week, but I feel like I'm starting to turn a bit of a corner. I seem to be tolerating the slightly increased diet and the calories are definitely appreciated! (To give you an idea of the “diet” I'm currently on, if it's not white, refined, or fluid, I probably can't have it. Nothing with whole grain or fiber, no sugar, no vegetables to speak of, no fat – super exciting). Still waiting to lose the swelling I picked up while in the hospital and impatiently looking for a return of strength. As a good friend reminded me, sometimes God chooses to use doctors and others to help us out and sometimes He just wants to do it His own way in His own time. This is one of those times. I know that my doctors would do anything to speed this process up, but there's really nothing more they can do except watch and wait. Weather permitting, I'll head back to Omaha on Tuesday (hopefully just for the day this time!)

Homeward Bound!

They gave me the ok to head home this weekend which is a huge answered prayer. At this point they feel my condition is stable. It's a lot of watching and waiting so there's really not too much they can do for me up here. (Plus I doubt that insurance is going to pay for me to stay here when I don't even have an IV). I wish I could say that after 10 days in the hospital I was feeling better and rested but the honest truth is that I'm very tired. Yesterday I went to mass and could hardly stand before the presence of the Lord. I'm sure the fatigue is a combination of not eating, steroids, and a gut that doesn't know how to absorb calories. They tell me that it's normal and I'm hopeful that all of these things will start to turn around quickly. They'll be keeping close tabs on my progress as I drive back and forth to Omaha a couple times a week for a while.
Will be a quiet, restful weekend for me but am looking forward to seeing everyone again in the very near future! I have a lot of outstanding “lunch dates” that I intend to keep – even if they have to be delayed yet again.

The Lord is good unto them that wait for him. But they that wait upon the lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk and not faint.

Day 8

We got a bit of a plan today, if it's possible to “plan” anything when it comes to GVHD. IF all goes well, and that's a big “if”, here's the current scoop. The doctors came up with a more aggressive time line than I had expected. They gave me a limited list of foods that I can try eating, put me on a new drug to try and suppress the immune reaction, switched me to steroids by mouth AND started to wean them today with a plan to continue tapering them every couple days. Said that if I can tolerate all the changes and start to increase my calories they'd think about letting me go home in several days! I'll have to drive back to Omaha a couple times a week to allow them to keep a close eye on my progress, but at this point I don't care. 2 days on the road for 5 days at home is worth it! Once again they reminded me of my need to be patient and the fact that GVHD isn't all bad. Couldn't have GVHD without a successful “graph” so it's a good sign that the transplant worked and Keith's cells are strong and fighting.
January 5, 2011 was obviously not great, but could have been worse. Frozen lactaid milk with a packet of artificial sweetener is surprisingly not too bad and we got a couple hours of “fresh air” this afternoon. (side note – True Grit is a pretty good flick ;)
Thanks for all the uplifting verses and well wishes – none go unnoticed or unappreciated!

But you are a shield around me, O LORD; you bestow glory on me and lift up my head. ~ Psalm 3:3

Admit Day 7

Not much has changed today. Last night I got an unwelcome visit from the doctor about 7:30 – the final stains came back and the pathologist said it was GVHD Stage IV – the news was a bit of a shock since things seem to be improving. This morning after talking to every nurse, PA, NP and doctor about my concerns, they agreed that one lab result would not dictate the final diagnosis but that they needed to look at the entire clinical picture and make a decision. Supposedly the entire team, including Dr Vose, would be consulted later today and they would come up with a plan of sorts. Still waiting to hear how that went. Regardless, no treatment works in every situation so there will be a lot of watchful waiting, careful monitoring of my intake and output, and making changes along the way. Not to mention tons of prayer that the first line treatment of steroids is successful. I pray that they get things under control so that I can return home this weekend! They said that this is fairly late to present with what appears to be acute GVHD – delayed side effects, why am I surprised?
Will write more as I know more. Blood counts and electrolytes still look very good. Thanks for all your love, support and prayers!

Jan 3; Admit Day 6

Finally got the preliminary pathology results and they're thinking GVHD. I guess there's a couple good things to be said for that – 1) since they suspected that on Wed, I've already been on steroids for several days which is the first line treatment, 2) it shows that Keith's cells are alive and well – trying to get rid of things that they view as “foreign” (cancer would fall in that box) and 3) no one is worried that this is in any way related to my cancer leaving remission. I haven't actually talked to the doctors since the preliminary report was released so I don't know where we go from here but am guessing that they will be pretty tight lipped until they know the stage of the GVHD anyway (I-IV). Right now I'm still on a VERY limited diet – sugar-free clears with a miniscule amount of white carbs to be exact. It's awesome, I recommend it to anyone that's looking to drop those post holiday pounds and be miserable along the way.
Had a little mental melt-down last night but today seems to be a better day (and Mom was still here this morning, I don't think she tried to sneak out in the night). Made it to mass this morning and had annointing of the sick so my peace of mind has improved. Thanks for all of your continued prayers – new prayer requests are that the doctors will have wisdom regarding where we go from here, my gut will heal quickly and that I'll be discharged home by mid-week. (I have great plans for 2011 and need to get out of here :)
God bless!!!!!

January 1, 2011

Happy New Year!!! Dry baked potato on NYE and a return to sugar-free clear liquids on NY Day, not exactly what I had in mind, but I guess it's one for the record books. (Didn't feel quite as bad until I heard the guy next door talking about the pizza that he had delivered to his room last night, so unless you also had a plain baked potato, I don't wish to hear about your NYE treats :)
To no surprise, we won't have any pathology results until the beginning of the week so looks like I'll be here for several more days. It's hard to argue with the doctor about having to stay when she walks in a says, this could be GVHD and GVHD can kill you. So I guess I'll sit and wait. I really don't feel too bad. No fevers, stomach aches seem to be a little better. They have me on steroids, gut rest and are starting to change my anti-rejection meds.
The “excitement” so far has been that it's ridiculously cold in Omaha and my room didn't have heat. Wouldn't you know! (or as my grandmother would say, “That's a fine how do you do.”) Since the unit was full, I had a chilly night and then this morning they decided to move me to COOP so I get to stay with Mom in a heated room! Right now I'm sitting in the sunshine and it feels great. I don't really know much else but will try to send an update now and then. Hope you're all doing well and that the Chiefs play well tomorrow – will give me something to smile about.

The Lord is good unto them that wait for him. But they that wait upon the lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk and not faint.