It’s Friday and I’m only slightly better… So I called to set up an appointment with Nurse Practitioner (NP) Steph. Practically her first words were, “Lets check you in to the hospital.” I say, “Lets talk about this a little.” I don’t have diarrhea, I’m eating well, I just have to go a lot. The Prednizone worked, just not enough. And I really do not want to go back in the hospital, Kai’s B-day is coming up! Hell, I have plans! Mind you Acute GVHD is serious, if I had to go I would go quietly.

So for over a week I was having 10++ BMs a day. NP Steph was assuming I was having diarrhea. So,then she suggested upping the Prednizone, but that is a really powerful steroid to fight GVHD, and I consider what I have to be mild – moderate. Use the big guns when the time comes, I say. Anyway, she then says there is another drug we can try called Entocort, which only targets the gut. Well, lets do that instead, after all its in my gut.

Daily Meds

My Daily Meds

Both Prednizone and Entocort are used for lowering the immune system, and I guess Tacrolimus does the same too. I’m gonna have to be very, very careful. Yep, I have a great white cell count, its 8.0 (I’ve never seen it that high in my adult life). But those 3 meds effectively make it worth 2.0. Think of wind chill factor, its only 20 degrees outside, but with the wind blowing its feels like 2 degrees. Bottom-line: I can’t fight off infections. Good thing I’m loaded to the gills with anti-this, and anti- that. One last mention… sticker shock. Co-pay for Prednizone = $ 6, Entocort = $250! Ouch!

NP Steph says if I am not better on Monday, I should be ready to check in for a stay, so they can fully investigate what is happening in my gut and how to treat it. Saturday – no change, but its one day. Sunday – better 6 – 7 BMs.

Monday – I’m back to regular. And I see my Doc! I really trust my doctor, he’s that good. Anyway, through the long wait-time to see him, I’m writing notes, questions, etc. Doc answered them all and went into detailed explanations (with drawings on the paper that covers the patient “chair”). He laid out the pros and cons of going home. I have to go home sometime, now would not change that. We have to go back each week to St. Louis, for at least a month. And if I get sick, its a two hour ambulance ride, no exceptions!

long road

Its a long road ahead

Side Note – We still have a long road ahead. I know now that being cured is an illusion. Some people get well; the medical team finds the right doses for meds; their Donor’s T-cells treat the Host (me, maybe you) in a “I’m going to ignore you kind of way. Because if you cause me problems I’ll come back and play GVHD on you.” Other people… well there are dozens of outcomes. That is not the path I plan to tread. I’m finding that path to wellness. I’ve treated my body pretty good the past six years, I’ll just do it better and more consistently. I’m lucky, I had time to practice, but I also chose that path too.

I’m Going Fucking Home! Terri cried after the Doc left the office, part in happiness, part in guilt at having been gone so long from the kids. That is really the hardest thing about this whole journey. We Skype every night, but nothing beats a touch or a hug. At the same time, if we were at home during this time, I could not have begun healing while taking care of the kids. Terri couldn’t have either, there is only so many things you can do in a day. Plus, we were at the hospital on average 2.5 times a week over those 5 weeks of being out-patient and stay in St. Louis. Thank you Bob and Loretta, we could not have done this without you! We are going to surprise the kids, they won’t know we are home until they walk in the door when they get home from school.

Unless something happens between now and May 1st, we will be home. That will be Day 54. We can’t wait!

~ Mark

(PS from Terri – This whole thing has been like a roller coaster ride, that you have never been on before, and it’s in the dark. We never know what to expect. Something comes up… is it normal for recovery? is it a problem? I am ready for some steady improvement, even if it is baby steps. Not knowing what to expect and trying to be prepared for anything is exhausting. I keep asking, and the medical people keep reassuring… each patient is different, their recovery is different, the medical conditions they face after transplant are different. So during the first 6 months or so, they are playing with treatments and meds to find the right doses and combinations that are best for Mark. But they have experienced it all, so they aren’t trying to treat him blind. As we have approached this May 1st date, which was our unofficial, in-our-heads, go home date, I have been a mess. Although I know Mark is on the path to improvement, I can’t help having this fear that something is going to come up and put a crink in plans. So hearing Dr. D say we could go home just released such a relief that I started sobbing in the office after he left. And then again when I called my mom to tell her “We are coming home.” Hell, I am dripping tears right now. I just want to go home. I want to parent my children. I want to go to work. I want to sleep in my own bed. I want to pet my cat. I am ready for Mark to keep getting better. I am ready to start trying to remember what normal life is, if there is such a thing. Mahalo to all of you keeping us in your prayers and thoughts.)

8 Comments

  1. Now you guys are making me cry, stop it.
    Another step forward, I am so happy for all of you.
    Keep it going.

  2. Such great news Mark and Terri! Been praying for you!

  3. Loretta and Bob

    Can’t wait to see you tomorrow! And not just because we will be released from active duty either!! I agree it’s been quite a ride, but the smooth road is a coming! 🙂

    • It’s only smooth by the quality of your shocks… But I think we have great shocks, and the best support network around!

  4. Linda Senenfelder

    We will keep you all I our prayers as always. Hoping everything g goes well with your trip home. Will keep praying that all is well.

  5. Linda, thank you for your continuous support on our blog… I always know you will be there and a prayer always follows.