skipping-rocksIntro

Sorry folks, but Terri and I have decided to do monthly updates unless something important happens, or we get new information that really matters. If you want to read our day to day life you’ll have to go to Terri’s Facebook page, become a friend and well… that’s about it. My Facebook page is only on the topics of science, the internet (esp., NSA, PIPA, etc), education and stories of cancer survivors. Most people don’t respond, and I take no offense, but I like to keep those topics in the forefront of everybodies mind, if my friends ever really see them. I do like to read about what’s happening in your lives and try to respond.

Onward!

Yesterday was a long, long day. Got to the Hospital (Siteman in StL) at 11ish am and left at 5:30pm. Not a routine day after all. We pretty much know that I have GVHD in my gut because it has come raging back over the past two weeks (GVHD is technically highly suspected, and because the only way to 100% determine that is doing a biopsy, which is the next step and may happen in the next month or two). They bumped up my Prednizone again, to combat the GvHD and are reducing it slower this time. I guess now that my Donor immune system does not have to fight off viruses, its decided to fight me instead. If the steroids work or not I think they are going to have to take a look at my gut and see what kind of damage has been done. Oh well… if its not one thing then its another.

So the other “major” issue is that my voice has deteriorated to the point I can barely whisper, which is frustrating when I want to communicate. Perhaps my family should learn sign language. The ENT (ear-nose-throat) doctor says that the viral “polyps” are growing much faster than before… yep, no big surprise there. Surgery is looming in the future to remove them. I’ve done this 4 times in the past, last time was about a year ago, just before the transplant. Before that, having them removed was like clockwork but it was two years between each surgery (CO2 Laser).

What variable changed? I have almost no immune system. White cell count is in the normal range (Yeah!), but as mentioned before immune-suppressing drugs suppress the immune system (aka white blood cells).So the polyps are caused by a virus, immuno-supressent drugs make viruses have a party in my body, so polyps re-immerge and grow faster than before.

And since we are talking about blood, my Red blood count (hemoglobin level is slowly going up, not quite in the normal range but getting there) and my platelet count has stabilized in the mid – 50s (we have a long way to go there). But it is stable and I know we will do what needs to be done to get it to rise up and become normal again. And that is likely to take another year. We were warned platelets are the last to recover. I think we were all hoping I’d respond well and be back on my feet by now. But it has become obvious that that is just not going to happen.

I will always have to live with GVHD, but it has been “mild” and/or manageable. Such is life. I have my family and friends, hopefully soon I will be healthier and recovered from the series of viral infections. I’ll work on my health, the alternative way (you know, meditation, etc.) and go from there. Where to? Right now I have no idea.

thIts funny… sad… and wonderful that it takes something like this to make us really look hard at life and what is really important. It did for me, I did it twice, when I was first diagnosed and then 7 years later when I went in for the transplant. Once is really enough, but I guess I had to review what I had learned the first time. That reflection is still going on and it is giving me a deeper look at who/what I am and who/what I want to be. Yep… I’m going on 50 and I can still decide to change direction and ride that wave out. It will take longer, after all 49 years of habits are hard to break, but I made some good change with them the last time. Anyway… instead of riding the wave in a Go with the Flow attitude, I went back to trying to bend the wave to my will. That led to a lot of stress and my body responded.

Even though I was doing the job I had always dreamed about doing, it was just too much for one person to take on. Sometimes you have to let the wave go by or don’t and get pounded into the reef. Energy and matter may make a perfect wave, but there are other variables that impact that perfect wave (or any wave). I know stress will kill me… meditation, qigong, acupuncture, a healthy diet, and an awesome job which I loved, were not enough to transfer that positive energy into relieving my stress level. Not to mention my love for my family and friends, and their love for me. Or perhaps if I did not have my illness, that level of stress would not have been an issue. And I’ve seen too many people with a greater amount of stress. Spilled milk! But clearly, I don’t know how to relieve my stress level. So that is something I have to work on.

~ Mark

doctors-waiting-room-with-cobwebsI have to add a story about yesterday’s visit. Ninety-nine percent of the time our interactions and care from Barnes-Jewish/Siteman Cancer Center are top-notch. However, yesterday there was a question as to whether Mark’s catheter was still placed correctly or whether it had “migrated” to another location. (If you are scratching your head on that one, join the party.) The only way to be able to tell was to have a chest x-ray. So at the conclusion of our doctor’s appointment (which had already started 1 1/2 hours late) we were sent downstairs to have an x-ray done. After jumping through this department’s hoops, said x-ray was taken and we went back upstairs to the doctor’s office to find out the results. And we waited, and waited. Apparently x-ray gets “read” by another department and then results communicated to doctor. Well, department that is to read the x-ray is waiting to get x-ray, and waiting and waiting.

Doctors looking at chest x-rayNow the magical hour of 5pm is approaching where departments are closing and people are going home. They call down to the department that took said x-ray and were told that Mark never had the x-ray taken. They hadn’t seen him, hadn’t talked to him, hadn’t taken an x-ray. Apparently Mark made the whole thing up and lied about getting his x-ray taken. Are you following this? Stephanie (our Advanced Nurse Practitioner) gets on the phone with the supervisor of the x-ray department and basically says if anyone is lying it is the tech that took (but claims never to have seen Mark) the x-ray. And that they better figure it out pretty damn fast. Within minutes the x-ray magically appeared, but now the department that “reads” the x-rays has closed. So we can’t find out the results until the next day. All of this potentially going to cause the catheter to be removed and reinserted (not really a minor procedure). Steph tells us to go home and she will call the next day once everybody has come back to work. Although we can’t just go home, because there is one more procedure to be done, which I won’t go into right now because that is a whole other story. Bottom line, we head to St.L for what should be a basic 3-week checkup and leaving St.L by 2. Yeah right. I think we finally got home about 7:30 (we left the house at 10am).

Both Mark and I are kinda anal about stuff going according to plan. We need to know what to expect and things to follow the plan, otherwise we are thrown way off base. Hence, our striving to just “go with the flow.” We work at it a lot. But it is hard. Very little goes according to plan, when a plan can even get made. We both are trying to slip into some type of routine for how life is going to go now. Mark’s really wants to do all those things that will work at improving his health, the stuff in his toolbox. I am trying to just get a daily routine to take care of my family (and myself – I have my own set of problems, but that is a whole other Oprah.). We both are struggling, but tying to take deep breaths and just go with what life is throwing at us. Because, obviously, fighting it does no good. It just increases stress which does more harm then good. So while you are sending vibes for Mark to continue to improve healthwise, send us some wishes for being able to deal with all the rocks being thrown in our river, and being able to go with the flow.

-terri