River-FlowThe Past

Well, its Day 156 or Sunday, August 11th 2013, whichever you prefer. Terri and I know we have not updated the blog in quite some time. We apologize for that, but life got in the way. The stream seemed to hit some rapids and time flew by, while it was for us at times a long bumpy ride. We also don’t want to account for every little thing that happens during this journey. Some details are important, some are not. But here is a summary of what has been going on.

The last time we posted I had just been diagnosed with CMV, we caught it early and they prescribed the best treatment (which was IV Ganciclovir. They had a nurse come out and taught Terri and I how to infuse it. And then came by every MWF to draw blood and check up on me. It takes an hour to infuse and for me the side effects were upset stomach and nausea, and fatigue. Nothing I had not dealt with before. Terri began working full-time and the kids and I mostly stayed home. We entertained ourselves the best we could and I attempted to walk around the cul-de-sac with Caitie. There were, of course good days and bad days and none of it was fun, but the end result was that my last blood test showed that I was negative for CMV. So catching it early and being proactive worked. Now we monitor it and wait and see.

The Present

Saw most of my doctors during this time and everything was status quo for the most part. They dropped my Prednisone down from 30 to 25mg/day and are planning to do it again this week. So far the GVHD has not come raging back but my gut aches, like a headache you would take tylenol for. My Doc seemed to think that was ok for now. They took labs once again and scheduled my next bone marrow biopsy for Aug. 14. My platelet count is still bouncing between 20 and 30,000 and we’re on a wait and see treatment plan for that.

I also had a cold sore (or Herpes simplex virus [HSV] – type 1, so they took a sample of that. That sounds like a minor thing and I assumed so too, we’ve all had cold sores before. For you that cold sore is no problem, for me it actually is a problem. My Doc and the medical team did not seem concerned before so why should I be.When I started to get mouth sores and a slight sore throat, I looked it up. Apparently that was a wise choice it, because that lab sample came back positive.. The med team in St Louis did not look over the results of the test. If I did not start feeling crappy (and this was three days after my CMV treatment ended) and looked up my lab reports this could have been bad. A lesson learned and I’m passing it on to you. You have to be your own advocate. Perhaps, this was a case of let’s wait and see, but NP Stephanie did not even know it came back positive!!! and we should treat it. Don’t wait for your doctor(s) to call you, look at your medical records and learn everything you can about every lab result. The internet is a great tool.

Although its not common, in transplant patients if it goes to your lungs, and apparently it does travel through the body, it can get ugly and the mortality rate is pretty high. So I now have contracted four illnesses (three viruses and who knows what that spiked my temp) in two months without any breaks. You can probably imagine I’m pretty worn out by this, my body has not had a chance to recover. So I’m on a bigger does of my regular antiviral, Valacyclovir. The side effects are not pleasant and I feel like crap all day long now. Fortunately, I only have to take it 7 – 10 days, I’m on day 3.

The Future

And again, its like starting all over again, the time when I got out of the hospital after my transplant. It’s been a rough two months. I’m certain the viruses make me feel like crap, but add on top of that the meds and their side effects. I know this all sounds negative, but we (and esp. for me) have not lost that positive spirit. There is too much to live for and I know in the end I will be well. I need to focus on my heath and build up my strength. I have now realized that for most stem cell transplant patients its a long ride, and it looks like I’m in a similar boat. I’m learning to let it go, cuz its the only way to flow.

If anything exciting happens we’ll let you know. And we won’t get the results of the BM biopsy until Aug 29th. So expect an update a couple of days later.

(terri-Yep, it’s been a bumpy ride lately. We are waiting to catch a break. Right now, our flow is a stream with plenty of rocks. But, this stream is flowing to a beautiful lake or into the peaceful ocean. I still know, deep in my soul, that this is part of the journey and we will all come through it stronger and healthier. Now to help Mark re-find his zen…)

~ Mark and Terri