Sunday, August 28, 2011

Chemo Week

This past week, I started each day (after exercise and breakfast) with a visit to a local cancer center for chemotherapy. The current plan is a week of chemo, three weeks off, another week of chemo, another three weeks off, and then a biopsy to see what's going on. I'll need to monitor my blood counts, and I may need transfusions of platelets and/or red blood.

I had thought the point of the chemo was to create an oversupply of white blood cells on the rebound, making it easer for my immune system to overwhelm the remaining leukemia. My new understanding is that the point of the chemo is to attack the leukemia, because leukemic cells are more susceptible to the chemo than are other cells. So all fast-dividing cells will suffer, but the hope is that the leukemic cells suffer disproportionately more, making it easier for my immune system to overwhelm the remaining leukemia. Same goal, different mechanism.

The Infusion Suite is very nice. It is a large, airy room with lots of comfortable chairs and a friendly set of nurses. I picked a chair looking out the enormous window. There are other patients using the room, some for chemo and some for blood. There are also private rooms, if that is your preference.

The infusion itself takes a little over an hour — plastic bag, hung on a pole, with a line running from the bag and into me. Over the course of the week, the nurses spread out the "sticks" across both arms.

The side effects have been as advertised. I had an evening of productive nausea, and I have needed a couple of naps a day. I also have a non-itchy rash on my face, but that might be graft-vs-host disease. (Which would be good.) It's a good thing I am not looking for a date, because I'm sure there's not much demand for guys over 50 with bad skin who have trouble staying awake and might throw up on your shoes. Sorry ladies, I'm taken!



= = =

I got in some good workouts before the chemo started wearing me down.

Last weekend, I did the following jog walk sequence:

2 1 4 1 6 1 4 1 2
2

1 4 1 6 1 4 1 2

I passed the 5K mark at 40:40 (a PTPR), and I averaged 13:07/mile for the entire workout (jogging plus walking).

On Monday, before my first chemo visit, I did 8 3-minute jogs with 1-minute walk breaks. I averaged 12:34/mile for the workout. (Speed work!)

On Wednesday, after two days of chemo, I did two ladders:

1 1 2 1 3 1 4
2
1 2 1 3 1 4

12:12/mile average! 

On Friday, which would have been a jogging day, I walked. And I took Saturday off. And took a lot of naps. 

On Saturday morning, I stopped by Jan's office to pick up some papers. The elevator was out. No problem, I'll just walk up to the fourth floor. I have walked up those stairs many times, and sometimes even run them. (We don't have many hills here in Champaign.) This was the first time I had to stop partway up and catch my breath.

Today, Jan and I repeated Wednesday's workout, sort of. That is, we jogged and walked for the same time intervals, but we covered less ground than I did on Wednesday and averaged 13:33/mile for the workout. Thanks, chemo! I hope you're accomplishing something good in there, because you're interfering with my training.

Tuesday, August 16, 2011

More Good Training

Beautiful weather this morning, again. 60 degrees, clear. Since I'm out the door at 6:00, it's not yet sunny. Chemo makes me extremely sensitive to sunlight, so I have to train early or late in the day.

Today, 10 2-minute jogs, with 1-minute walks in between.
29:00 workout time. (There's also 10 minutes of walking to warm up and more walking after.)
2.37 miles covered.
29:00/2.37 = 12:16/mile

Heart rate around 160 at the end of each jog, and between 120 and 130 at the end of each walk. Slightly higher than that for the last couple of intervals.

Sunday, August 14, 2011

Not a Fairy Tale

Since the beginning of the year, I've been living the fairy tale version of fighting leukemia. A scary monster appears, things look grim for a while, but, with grit and cleverness and magic potions, the monster is vanquished. True, there was more than the usual amount of vomit and shit than in your typical fairy tale, but it was still the (relatively) short story with the happy ending.

It looks like my story is going to be more like a novel, and we're only a few chapters into it. Maybe a short novel, maybe a long novel, but not a fairy tale.

Until June, I was following the shortest and best possible story arc: I tolerated chemo better than most, I tolerated the stem cell transplant better than most, my first post-transplant biopsy found no leukemia.

Then a biopsy in June turned up a little bit of leukemia, but I could still stay on the same arc by going off the immunosuppressant drug and having my new immune system clean up the rogue leukemia cells. It was possible I would need no additional treatment, just recovery time. That's the fairy tale version. It happens for some people.

But that is not my story.

I don't have exact cell counts from my most recent biopsy yet, but there are other numbers indicating that there is still a little leukemia. The number of blasts is slightly higher than normal (6.6% versus 5%). The number of platelets is declining (from 136 to 88 over the last month), and falling platelet numbers are an early warning sign of leukemia. No eyewitness testimony of leukemia, but strong circumstantial evidence.

The falling platelets, combined with the blood thinner I'm taking after my pulmonary embolism, make me bleed very easily. I have scabs on my hands and wrist from wounds I don't remember getting. There is another on the back of my ankle that I do remember getting. We have carpeted stairs, and the back of my leg grazed the front of a step on the way down to the next step. For most people, that's at worst a tiny rug burn. For me, it's a wound bleeding into my sock.

Back to the root problem, the chemo didn't eliminate the leukemia, and the gradually strengthening new immune system hasn't done so, either. What's next?

Most likely, I will start another course of chemo next Monday (August 22). Might be a five-day course or a seven-day course, probably done as an outpatient here in Champaign-Urbana.

This chemo treatment is, according to my doctor, much less potent than what I had in the hospital. The goal then was to wipe out all cells in the marrow, both to eliminate the leukemia (which it almost did but not quite) and to prepare the marrow for the stem cell transplant (which it did). The goal now is to knock down my blood counts enough that my new stem cells go into overdrive and churn out an oversupply of lymphocytes. Then we will watch blood counts carefully for the next several weeks to see, we hope, stabilized or improving platelet counts. If we see that, I'll do another round of chemo, and then a biopsy to see where I am. If not, then we're onto another treatment and another chapter.

I'm not sure why more lymphocytes will be better at finding rogue cells than are the nearly normal number of such cells I have now. My understanding is that lymphocytes either do or do not recognize other cells as being unwelcome, in which case numbers wouldn't matter, but I must not understand what's going to happen. I'll see what I can learn about that.

I do know that flooding the system with lymphocytes, no longer held in check by immunosuppressant drugs, increases the risk of graft vs. host disease. So we'll need to keep careful watch on my skin, eyes, liver, and intestines. I may already be exhibiting a little GVHD already, as my scalp and to a lesser extent my face are kind of itchy and flaky.

Meanwhile, I had my best run of the year today: Ladders of decreasing length, for a total of 35 minutes jogging. Even on the longest interval, I didn't reach muscle failure, and my heart rate fell pretty quickly back to around 120 during the walk breaks. In other words, some training effect! Finally!

1 1 2 1 3 1 4 1 5
2
1 2 1 3 1 4
2
1 2 1 3
2
1 1 2 1 1

At the 5K mark, I noted the time: 40:50. That's for a mix of jogging and walking, and it gives me a benchmark measure of training intensity.

Tuesday, August 2, 2011

Training

My basic training pattern these days is a day of walking mixed with jogging, followed by a day or two of only walking. That's my version of alternating hard days with easy days.

A little over a month ago, I did a workout of increasingly longer jogging intervals, up to 5 minutes, and then back down, for a total of 29 minutes of jogging. That was very encouraging.

Shortly after that, my endurance began to wane. I could barely get to 3 minutes on my jogging days, then barely to 2, then 1... I was prepared for training plateaus, but this was a definite step back.

A few Sundays ago (July 17), Jan and I did 31 one-minute jogging intervals. It was a PTPR in terms of total jogging time, total workout time, and total mileage. But if I didn't start getting my endurance back, I wouldn't be running a 5K any time soon.

What was going on? I don't know. My doctor was not very interested, either. A stem cell transplant patient who is walking and jogging about an hour a day is in better shape than the rest of her patients, almost all of her colleagues, and herself, so it's hard for her to be concerned about it.

My diminished endurance coincided with going off my immunosuppressant drug and letting my new immune system go to work hunting down the traces of leukemia found in my previous biopsy. My theory is that a lot of internal work was going on and sapping energy, similar to how you sometimes feel lethargic before the other symptoms of an immune system in battle mode — fever, aches, congestion — manifest themselves. I never had those other symptoms, but there's plenty of reason to think my immune system was busy. We certainly hope that's been going on.

A couple of days after my discouraging accomplishment of 31-minutes-of-jogging-in-1-minute-intervals workout, I bounced back with a pyramid of jogging (and walking) that had a 4-minute jog in the middle: 1 2 2 2 3 2 4 3 3 2 2 2 1. A couple of days later, I did a "speed" workout of 10 one-minute runs. It felt great, but resulted in my third strained calf of my recovery, so I had to take quite a few days of walking only. Lesson (finally) learned — no hills, no fast running.

This past Sunday (July 31), Jan and I jogged some 1-, 2-, and 3-minute intervals, for a total of 32 minutes of jogging. Another PTPR!

We're still waiting on the results of my July 22 biopsy, to see if my new immune system tracks down the lingering leukemia. I feel good, for what's that worth.