Intro

We’re going to try to use a similar format each month for consistency, “unless something important happens, or we get new information that really matters.” We are really trying to go with the flow during my post transplant life. It’s just going to be a series of good days and bad days, and I (or we) are learning to live with that. To say the least GVHD sucks!

Has anything changed?

microscopeYes and no… Last Wednesday I had biopsies taken from my gut, which involved an endoscopy and a colonoscopy. I’m still waiting for lab results to rule out any other possible viral, bacterial and/or fungal infections which take time to culture. But as we suspected forever… ok, since the transplant in March, I have GVHD of the gut (from stomach to all the way down to the other end). This only involves taking the cell samples from the biopsies and looking at them through a microscope. They did not take biopsies of my liver and now my pancreas, because that is truly invasive, involving cutting me open. Even small holes can be dangerous, because of infection. So my Acute GVHD has now turned into Chronic GVHD. It also appears that I have developed a mild case  of GVHD of the skin and eyes. C’est la vie

And all of this is “normal”, just like a bell shaped curve. I move around the median quite a lot.  Not what we had hoped for, hence as we have said before, we are learning to live with that. My Doc (and medical team) changed a couple of meds, some to replace others, some to treat recent symptoms. Which is good news, because it’s helping. Again, I’ll have this for the rest of my life, with good days and bad days… good months and bad months. I’m still building a routine to improve my overall health. Again, a stem cell transplant is NOT a cure, but it sure beats the alternative.

no there wasn't a sock monkey - I just thought it was funny :)

no there wasn’t a sock monkey – I just thought it was funny 🙂

Good news… November was free of infections. Yea! Not so good… November was four weeks of GVHD hell. I did have a great Thanksgiving turkey meal, which I am truly grateful for. It was fun, because I guided Terri, Caitie and Kai on how to make a Thanksgiving meal. I’ve cooked it for 28 years now (minus a couple of years when we went over to someone else’s house), it is time to pass on that knowledge and it was wonderful to have them in the kitchen with me. 28 years… It’s hard to believe that most of my childhood friends have turned 50 and being the youngest of the group, I will too. All I can say is WTF!

I don’t think it is necessary to go into detail of what November was like. For those of you who read this blog or will read this it to learn about MDS and a stem cell transplant, I still plan to write that up in a new tab. As positive as we are and have tried to convey, this has been one hell of a journey. But that is not what this website tab is for. I’d do it all again given the choice. That does not mean I am willing to do it a second time, but that outcome is very unlikely. AND one I won’t have to consider for some time to come, if ever!

I still have no idea what I want to do in life, aside from focusing on my health and loving my family. But Terri and I talked about it in pure hypothetical speculation. At the top of my list is becoming a Brew Master. Yep… that is right, what better job could there be than brewing up beer for a living. With my knowledge of organic and general chemistry, I think I could make some mighty tasty beer. 😎   No I can’t drink it, but a small taste is all it takes to know its a fine beer. Plus, I have plenty of friends who are beer snobs, and I’m sure they will have no hesitation about giving their impressions. I truly hate Belgium style beer, so would have to depend on their snobbiness to have one on the menu. Plus a small kitchen in for some fine food (Yes, I was a chef in a couple of good restaurants while I put myself through school) and we have the makings of a great pub. Microbrew is the “in thing” these days, but very few know how to make a great west coast beer. But I guess I should get myself healthy first…

one day at a time!

~ Mark

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A little cheesy - but the truth

A little cheesy – but the truth

I will second the fact that Mark does make good beer, and I don’t really like beer. Hmmm… maybe we could turn our basement family room into a brewery. The irony is that he can’t drink beer right now because of the yeast in it. Anyway… there are a lot of options to explore.

I don’t have a lot to add. Having the biopsies done was a good thing, mostly because it rules out other things that would have different treatments. Hopefully, the new meds will help settle his stomach down so he can eat something besides homemade soup. For a foodie like him, this diet is really trying his patience.

People always ask me how Mark is doing.. and I never know how to answer. Do you want the generic “fine”? Do you want to know all the grisly details? There are good days (weeks) and bad days (weeks). There is always pain, there is always nausea, there is always Just not feeling good. It is just a matter of degree. But I know he likes that people ask and wish him well. Hopefully now that the docs are settling on treatment plans, I will be able to say, “it’s been a pretty good week (or whatever)” more often.

I am always busy. I think I have adjusted to working full-time again. Other than sometimes being surprised by the sudden remembering of I have to go to work again tomorrow. But, I am learning lots. And honestly, it is fun.(Easiest answer, I am building web pages for students to take online high school courses.) My bosses and co-workers have been very kind, compassionate, and understanding about needing a semi-flexible schedule to deal with things that come up and take me away from the office.

Before this starts to sound too much like a Christmas Card newsletter… I will wrap it up.

Aloha and Mahalo,
~terri

*updated and expanded some for clarity on 12/12/13

 

6 Comments

  1. I too had endoscopy & colonoscopy recently–enteroscopy on 12/22. Good luck with all treatments.

  2. Linda Senenfelder

    Just anted to say we s are prYing for the four of you and hoping the things get better with time. Wishing you Ll a very Merry ChristmS and l the best for the New Year. Take care of each other. With much Love. Linda and Bob

  3. I’m always thinking of you guys. I hope December gives you a little break.

  4. FYI, we’re all still thinking about you all the time, Mark, and hoping you get to the point that you start experiencing steady improvement without ANY setbacks!

  5. If I may be a bum for this week/month in responding to your comments… I want to thank all of you once again for the positive vibes and love. Last month was… we’ll… a challenge. So on a the lighter side… Think about the old guy about to be thrown on the dead person cart in Monty Python’s The Holy Grail, when he says, “Ii’m getting better!” And then there is the song from “Life of Brian”. Don’t tell me you can’t remember it… but the refrain is “Always look on the bright side of life (whistle). 🙂

  6. It is certainly true, Mark. We are always thinking of you and your family, sending those invisible but powerful positive vibes your way. “When you’re chewing on life’s gristle, Don’t grumble, give a whistle” Yes, we know that song!

    Mele Kalikimaka to all!