Testing, testing...again

Last week I felt like my legs were getting worse. Instead of growing stronger, they were getting more wobbly and weak. And my hands were shaking more than before.

I did go to two yoga classes, and they went better than the previous try. But whereas I had run (sort of) around the lake in the past few weeks, last week I didn't have the strength to do it.

I also took Katie to New York for a day and went to a dance concert and an art lecture at a gallery in Northampton. And went with friends to a maple sugar shack where we had delicious pancakes. I envy you Californians a lot of things, but I like this March and April tradition in New England.

So?

I was concerned about my legs. And about my hands shaking more than before. I thought maybe my red count had fallen. But my breathing was fine, so I let it go until my appointment, which was yesterday.

Sure enough, my counts were fine. Dr. Alyea printed them out for me "as a souvenir." It said hematocrit, 31.4; white count, 7.8; and platelets, 81. Then just for reassurance, because I've brought this up before, I told him I still have problems with word retrieval and memory loss. I was waiting to hear the usual: there is really something to chemobrain; so much has been done to me and I need more time to fully recover; etc. Instead he looked at me when I said "yoga" and said maybe I shouldn't push myself so hard. Then he said I should get another MRI to make sure everything's OK in my brain.

I hesitated. "But I've had MRIs and CAT scans recently." He said to do it anyway – that day – so we can put this behind us.

The first time I got an MRI I was pretty freaked out by all the sounds of banging and drilling and rifle fire. Now I've had it done so many times I almost fell asleep. The technician said it would be ready to read either yesterday or today.

I called today and didn't hear back. Off went my imagination. So many things to do, and all I can do is catastrophize. "My brain is bleeding and sending off little sparks that are making me walk with a lurch and bump into things." Or, "I beat leukemia and now, so sad, little monsters will be coming out of my head." (Don't worry, I made that one up.)

I talked to several people today who were all very rational. They all said, STOP, STOP, STOP! I wasted one week worrying about my counts, and now the MRI is taking over this week? I've had lots of tests. I've been good at going with the flow – sometimes – and sometimes the crazy person comes out. I will try to get her calmed down tomorrow.

News flash:

At yesterday's weigh-in, I was one pound higher than my normal weight. So I've gained 25 pounds. When I was so skinny, I shared my weight with everyone. I'm not telling now. I'm watching my fat intake. I guess it's the normal process of starting to eat again and also the side effects of the prednisone.

Stuck in the hospital a little longer

They did a CAT Scan of my lungs today and found that the good old fungal nodule had grown. Once again this means no super-quick discharge. Forget about 24 to 36 hours.

Sometimes it goes away entirely, but when my system is immune-suppressed, it starts to come back. Today's scan showed that it was larger than when last checked a month or so ago. The doctors hoped that by this time my stronger immune system would keep the fungus at bay, but that doesn't seem to be the case. I have been taking the drug Voriconozole for a long time, but they are now going to put me on an IV medicine, Ambisome, while they compare the past scans to develop a plan. They are also going to check the "Vori" level in my blood to see if it is absorbing properly.

I had another low-grade fever this morning. Adding this all together, I'm really not sure now when I'll get out. I hope it will just take a few days to figure out what to do about the fungus.

I got permission to leave the floor this morning, so I put on a heavy mask, walked one length of the Pike and sat in a wheelchair in the sun outside at a nicely-landscaped entrance that my mother had dubbed The Riveria. I read the New York Times and enjoyed the fresh air. In the elevator on the way back, however, I got dizzy and felt like I might faint. I knew that my blood pressure had fallen. I made it back to my room, and when the nurse took my pressure (standing) it was 65/54. The episode earned me five hours of IV fluids. Actually after I sat down and had a drink, it already started to go back up.

Now I'll need a new book and maybe a movie to get me through the rest of my stay. Arrrrrggggghhhhhh.