A Rollercoaster Week & Living in Limbo

My biopsy went well last Monday without too much pain. Ruth and I had a nice trip up to Richmond. We had to wait some extra time because my Hgb was down to 7.3 and they waited to send my type & screen until after my labs were back which took forever. My labs were wacky in that my platelets went way up, but my WBCs plummeted. That was a little discouraging. So an hour wait for the type, then 2-1/2 hours to transfuse the blood, after getting the biopsy.... It was a long day! Maybe it was the fentonol, but I was in a good mood and chatted with several of my transplant friends. We did make it home by 5pm. On Tues it was such a pretty day I went walking twice around the block with a friend. But thru the rest of the week my energy seemed to drop.

On Friday Brant took me up to Richmond for a clinic check and preliminary biopsy results. My WBCs continued to drop, but my Hgb held and platelets went up. I was a little concerned when we got put in a consult room instead of an exam room. The Dr. came in to say that my blasts were at 60% after being <5% (normal) at my last biopsy. The doctor seemed as surprised as us with the results which the pathologist deemed as a major relapse of leukemia. He suspected maybe something else was going on since my counts in general were rising, and my bone marrow is now 100% donor which is a good thing. Last time there was about 17% of my stuff still lurking around. He ordered extra slide stains and said we would just have to wait and see. So it was a long weekend and we opted to not say much to the kids or update the blog since we didn't really know what was going on.

Over the weekend I got weaker and weaker. It is frustrating when you just want to get up and do stuff. I'm sure some of it was the mental load on us as well. I did enjoy sitting and watching Chris' volleyball tournament on Saturday. By Sunday I was so weak I made an appt in Richmond for Monday thinking I surely needed blood...plus I wanted to see if any more results came back.

Monday Mom took me back up to Richmond. I had lost 5 lbs over the weekend...not good. My Hgb was fine but I found out my liver enzymes have skyrocketed and they are thinking Graft vs Host where the donor cells are attacking my liver. They sent me home after stopping one med (again, I needed no repletions which is a good thing), but I wasn't happy at how cruddy I felt. I was due back on Wed to start my chemo and they will see then what my liver is doing.

On Tuesday, the Dr. called me twice to report that my additional tests, including the FISH and cytogenetics, had come back with no signs of Leukemia. This was pretty exciting. He thinks the blasts are my donor cells trying to make some new marrow, which is still pretty sparse, but a little better than last biopsy. It isn't a traditional way of seeing things, but since when have I been normal??? They will biopsy me again in a few weeks to see what all those blasts have done.... Hopefully grown into normal blood cells. The doctor still feels that the weakness and fatigue are a result of possible GVH of the liver. Even though I was still pretty weak I enjoyed watching Katie's volleyball match and passed out the team shirts. Don't even ask me how I got suckered into that one, but to her credit Katie did the majority of the work. I woke up the next day with sore triceps from folding the shirts while holding them up. Guess I haven't used those muscles in a while!

So today I am back at MCV for a week of chemo.... Just what I want to start when feeling like dirt...lol. My liver enzymes almost doubled since Monday and my blood pressure was below 90. So it has been a busy day. I got fluids to plump me up, but again didn't need blood or platelets and my WBCs are starting to rise. The doctors decided to jump on the liver issue as though it is GVH without doing a biopsy since that is kind of invasive. I have a liver ultrasound tomorrow to rule out leukemia or infection in the liver. I have started a steroid, an IV anti fungal, and a mild immunosuupressant to beat back the donor cells a bit but hopefully not interfere with them keeping the leukemia away. And of course they are going to suck lots more vials of blood out of me to run more tests. We may make it back to the Hospitality House by 7:00pm - ha ha! But mom did say we got a sweet corner room with two beds (no cot for mom!) and a desk - wow! We must have hit the Platinum level based on our number of stays.

So that's the news from here. Lots of stuff going on, some sounds good, some may be a little scary. But it is always good to hear they don't see any leukemia. Hopefully treating my liver issues will get some of that energy back. One day at a time.... One prayer at a time.