Chemo is a Pain in the Ass

Saturday:

Deborah informed me that my blog was getting a bit out of date, no entries since who knows when. It’s because I started slowing down after the last chemo, just not feeling terribly energetic.

Last week was the week that all family members went away, except for David, who was working full time. Howard and Andrine went to the coast, Gavi went to Pullman to visit his girlfriend, and Jasper is rehearsing a play, Don Quixote, at the San Diego Repertory Theatre.

Although it seemed overly cautious, we set up a schedule so that friends could come in and be present in case I rapidly fell ill as I did after the last chemo. It was fun to have people come over and have them work or study at my house. Liz Schwartz came on Monday and wrote copy for symphony programs. She got out a bunch of CDs to listen to and had some library books to sift through to find interesting tidbits about the pieces and composers. That looked like a great job. Sylvia came on Tuesday and accompanied me on a doctor’s visit, and then helped me put Chinese herbs in little capsules so I could actually take them again. (The herbs in solution were too unpalatable to keep down in the face of chemo.) Sarah Shine showed up on Wednesday morning. She is about two weeks away from giving birth so we got to talk about babies and fun stuff like that. Anhei came in the afternoon and we talked and then took a walk in the rain. So I must have been feeling okay on Wednesday if I felt like walking.

Thursday, however, was a different matter. My hemorrhoid became very painful suddenly. Sylvia came over and we drove through the driving rain to Milwaukee to see the naturopathic hemorrhoid doctor. After that, I had a hydro with Lori. She noticed I was running a low grade fever, in the 99 degree range. I went home, feeling pretty tired, and went to bed.

I took my temperature and it was rising. When it got above 100.5, I knew to call Dr. Van Ho. He said to come in and have my blood drawn, which I did. Stephen drove Sylvia and me because at this point I knew I was in no shape to drive. While we were waiting for the lab results I suddenly couldn’t stand to sit upright anymore so Sylvia asked for a place for me to lie down. More waiting and more waiting, then finally a nurse came in to draw more blood, then the doctor came in and said I was neutropenic again and had to go to the hospital. I had no neutrophils at all, and the white cell count was .4. This was after the neulasta shot which was supposed to solve this problem. I was quite discouraged. The doctor opined that it may because the chemo treatment was too strong. He proposed cutting it back by 20% next time. Like every chemical I’ve every encountered, I’m very sensitive to it. Cutting back by 20% doesn’t seem like enough cutting, but perhaps we’ll try that and see if I can stay out of the hospital.

The hospital had no beds on the oncology ward so I was sent to the ICU. (The photo is from the ICU.) This is not a place one wants to be if one is conscious. The nurses were delighted to have a patient who could walk and talk for a change. The room was quite large and encased by glass so anyone could peer in to see how the patient was doing. There were curtains, but the nurses didn’t close them all the way. There was no bathroom since comatose patients don’t need bathrooms. They brought in a commode for me. I was hooked up to an IV which couldn’t be dragged around so I was on a very short leash. The commode was close to the bed so I could use it, but I couldn’t venture far enough to close the drapes. There was no such thing as privacy and I had to tell myself that I would never see these people again so that I could manage to use the commode. I’ve never felt so exposed.

The evening and the night passed and I was still hooked to the IV. The lights in the room didn’t turn off, because what do you care if you’re comatose? All sorts of beeps and alarms chimed through the night. My fever was over 102, but I felt pretty good compared to my neighbors. I obviously didn’t belong there.

At about 10 am the next day, I got untethered from my IV. That was a vast improvement. I could close the curtains when I used the commode. The nurse brought me in a CD player and the Beatle’s White Album (among others) so I had some entertainment. There was a TV in the room but it had a very dim green picture; it was evidently just a prop because comatose people don’t watch TV.

Finally, in the late afternoon, a room on the oncology ward became available. That didn’t mean I could move immediately, however. It still took a couple of hours for the new room to be cleaned. I was impatient to the point of near insanity by that point. Fortunately, David showed up just when I was feeling like this would never end. After a while, the nurse appeared with a wheelchair and we made our triumphant ascent to the sixth floor.

Oh, frabjous day, calloo, callay. I’m in a real hospital room again. I can close the door. The lights turn off. I have a toilet that flushes and I don’t have to use it in view of casual passersby. I suppose we have these experiences to make us appreciate what we have. I can almost enjoy being on the oncology ward now that I’ve experienced the ICU.

Howard and Andrine were at the coast during the big storm on Thursday, the night that I was admitted to the hospital. They were at Rockaway Beach, which had the highest sustained winds in the Northwest that night, 97 miles per hour. The lost electricity and heat. It took them six hours to drive back to Portland on Friday, a journey that usually takes two. But they arrived home at last. After a brief rest, they came to the hospital and brought in an electric menorah for me, since it was Hanukkah. We screwed in light bulbs instead of lighting candles and sang prayers. I had been lamenting missing the first night of Hanukkah with my family, so it was a delightful surprise. All night, nurses and CNAs would come in a remark on the menorah. One of them said, “Your candelabra isn’t working well. Only two bulbs are lit.”

My blood counts were still very low as of this morning so I didn’t get to go home today as I had hoped. However, they are struggling back. The neutrophil count went from 0 to 913 (it has to get to 1000). The white cell count is up to 1.8, with 4.0 being the goal to get me out of here. And I’m learning that for me, neutropenia is a pain in the butt, literally. When I get neutropenic, my first symptom is hemorrhoid pain. It’s so undignified, but there you are. I’m finding it’s hard to go through this chemo experience without learning all sorts of things one would just as soon have skipped knowing.

Sunday:

Oh, hallelujah, I'm home again. The doctor came in this morning without a mask, a good sign since everyone has to wear a mask around neutropenic patients. He said my counts were up. He spoke so rapidly I didn't get what they were but so what, I was already packing. I called Howard and he came and got me and we went out to breakfast at The Bridges Cafe. We ordered smoked salmon eggs benedict and I polished off the whole thing. I was starved for decent food. I had dutifully eaten the hospital food but it was hardly a pleasant experience. Real food, by contrast, was such a pleasure. Oh, my.

One of the problems I'm continuing to have, however, is being literally crippled with pain from the hemorrhoid. It makes it very difficult to walk and move around. Howard offered me an arm to escort me around and I needed it. I've no idea how to get over this. I took a pain pill when I got home, something I try to avoid at all costs because it will just compound the problem later by causing constipation. Oh dear, I sound like all those boring old people who talk about their bowels, for instance, the ones that would drive me mad with impatience and disgust when I was a teenager. Oh, wait, I get it! I am officially a boring old person! Now I understand how such topics can become central to one's consciousness. Pain has a way of commanding one's complete attention.

Of course, being home has its perils as well. David ran a high fever all night and is in the grips of some gastro-intestinal disorder. Tasche has a cold. I'm keeping to the third floor, avoiding the kitchen, and only using my own bathroom. I'm still operating on less than half an immune system so it's wise to take every precaution.

But here I am. I'm home. It's a rich and varied environment and no one here is going to come in and stick me with needles or take my blood pressure in the middle of the night. There are so many things for which to be grateful.