Day -6

Thank you to everyone for your comments and support on Day -7! They were wonderful to receive on my first (ever) day of chemotherapy. From all I’ve heard, I’m on the downhill slide now, in terms of how I will feel and the risk level assumed, so I’ll look forward to many more loving comments in the coming days/weeks.

Last night I didn’t sleep especially well. I had some discomfort from the tube and the biopsy site. But mostly I think it was simply the unfamiliar room. That it was a hospital room probably made it worse, but even when I travel for work and sleep in much nicer hotels I usually have disrupted sleep.

Shortly after 6AM, having given up the battle with sleep, I hopped on the exercise cycle and rode it for 30 mins while listening to Mudhoney’s self-titled album. Nothing like a little 60s inspired grunge first thing in the morning! As I was moving over to the dumbbells the nurse came in with the first of my two daily bags of chemo. He had to start early because there must be 3 hours between the administration of each kind of chemo. They don’t mix well immediately. I wasn’t in the mood for a chemistry experiment; so we got started. My first time was a non-event, just like being hooked up to any ordinary bag of liquid.

The nurse then weighed me and took my temperature and blood pressure. The latter was high at 180, but that was due partially to riding. I saw no reason to let a little chemotherapy interrupt my work out. So, I spent about 20 mins pushing and pulling the dumbbells around.

Breakfast came. But the food leaves me too little of interest to describe; so I won’t dwell on it.

After breakfast I began to feel a bit dizzy. The nurse took my blood pressure again, but nothing was found that could have caused the dizziness. It was down to 160. Still too high. Later he came in with the results of yesterday’s blood test. The sodium and creatinine levels were also high. This has been a recurring theme throughout my treatment. It all points to the kidneys. But a couple of ultra sounds revealed nothing. And the creatinine, at least, has been high but stable for nearly 10 years. But the kidneys are important for processing chemo out of the body. In my circumstances any dysfunction of them is a concern. There is the risk that dialysis might be needed.

They hooked me up to a couple of bags of water over the course of the day, the better to flush the system with. And I have been drinking liquids almost continually, and…well needing to visit the toilet every 15 mins or so. So I push Ginger Rogers, who carries the fluid bags, over to the bathroom and do the required deed. Once I forgot to close the toilet top before flushing. I broke the rules! I was paralyzed. Do I call someone, as if something had dropped to the floor. Then I reasoned that urine is sterile in any case, and once the flush starts there’s not a damn thing anyone can do any way. So, I took a deep breath, stepped back, and went about washing and disinfecting my hands. Up till now, no one even knew!

My link to outside world today has been through the nurses. They are all terrific. The morning guy wanted to talk politics, and as long as there is a fair amount of agreement, I never mind doing that. He also knew one of the two people whom I know who went through this here (8 years ago) and was pleased to hear that I had been in contact. The midday women has a hugely sympathetic heart. For a while yesterday she just stood by me, smiling behind the mask. It made me a little uncomfortable at first till I realized she was just being with me. It didn’t matter if we spoke. After that I was completely won over. Today she told me the dizziness is caused by the anticonvulsant. A little dizziness beats a seizure any time. And it would pass.

She also knows the two people whom I know who had treatment here and are now thriving. We talked about how people react so differently to very similar treatments. These two both had Leukemia, not Myelofibrosis, and at least one had had chemo before the transplant and was severely weakened. One was in and out in only 3 weeks! The other had a really rough time of it and the prospects were not so clear for a while. I’d be happy for something in between! The night nurse I see less often. But she also has been warm, attentive, and caring. And she gave me sleeping pill for tonight.

The transplant doctor checked in. She expressed concern about my kidneys in relation to the optional fourth day of chemo. She wants to see what my readings look like on Monday before deciding whether to give me the fourth day. This is an example of one of those unwelcome decisions that patients and their doctors often have to make. A fourth day could possibly really foul up my kidneys, rendering me temporarily or permanently dialysis dependent. However, it would improve the prospects for the success of the transplant. But she stressed that she has done it successfully with just three days.

The biochemical processes are not in my control. The kidneys will either be functioning better or not. Realistically I can do nothing but wait, and, from the perspective of Carpe Diem, not worry. I am all right with that; at least I have been so far.

From what I hear from my outside sources and the second nurse, on Monday after three days of chemotherapy when the weekly nursing staff returns, I can expect to be feeling at least weaker—maybe worse still. I need to get all my partying in this weekend! Those who live and work near me know that I did not feel very bad entering the hospital. Except for about four days in the last 10 months when I could not drag myself off the couch I was so fatigued, I have been running at about 95 percent of my full energy level. Full enough for no one, who didn’t already know, to notice. How weird! That is probably all about to come crashing down.

Till tomorrow: Thanks for reading. Beginning of the cure. One day at a time. Carpe Diem!


Day -5

Day -7