Monday, September 20, 2010

September Status Report

I have delayed writing my newest blog entry---and I know there have not been many, or even any, lately---until I had the latest test results and could digest them to make sense of it all.

The short report? To quote Dr. Howard Schlossberg, my oncologist: "Looks good."

Here's the unabridged version:

My final chemo session was at the end of February. The CT scan and then a PET scan shortly thereafter showed that my lymph nodes had shrunk pretty much back to normal. A couple were still a very little bit enlarged, but barely so. My eyes and my fingers cannot detect them, so I am calling them "normal."

My blood tests showed a very low white blood cell count (meaning an immune system that was still quite sub-par) and my red blood cell count was at the threshhold of being considered anemic. Dr. Schlossberg was not ready to use that term, but when I compared the numerical scores to standards readily available on the Internet, they were right at the top edge of "anemic."

Scoreboards aside, I sometimes felt anemic. I could ride my road-bike for 15 miles and feel good, but get winded and dizzy just climbing stairs. Definitely not normal. But also not uncommon for people who have had the chemo therapy that I had. My reading tells me this situation could be expected for a year or so after completing chemo therapy.

I had another PET scan on August 30th, although I almost cancelled it. I couldn't see what decision would be served by it, and was against the idea of soaking up more radiation for no apparent reason. However, Dr. Schlossberg convinced me that the PET scan would "light up" any lymph nodes that were abnormally active, even if still small.

And if they did light up? What then? Not sure. I am not sure the added PET scan was really useful in terms of possibly jumping into another round of treatment---the only possibly decision that could be made from the test, especially when blood tests at the same time showed no change from April or May; that is white and red blood cell counts still low---maybe a teeny bit improved.

The August 30 PET scan showed no enlargements of lymph nodes since the completion of chemotherapy, nor any that were particuarly "lit up."

Nobody is using the term "remission" and there is no cure, but the fact of the matter is that my CLL has been bludgeoned into a seven-month hibernation.

I'll take it.

Also, I have started taking vitamin B12 and iron supplements to try to boost my red blood cell level. I have had no blood test since starting, but I do feel more energetic.

Considering the cards I was dealt, not bad.

Monday, June 7, 2010

And the score is . . .

Once again I would say that "no news is good news."

I completed my final round of FCR chemotherapy (fludarabine, cytoxin, and rituxan) on February 25th.

On March 22nd I had a CT scan that showed my lymph nodes had shrunk nearly back to a normal size.

Since then?

Intermittent bouts of sweats, itching, fatigue, a numb toe now and again, but---over time---less and less of it, I think. And an itchy spot on my back that makes me wonder about (and sometimes worry about) a recurrence of shingles.

On May 25th I had a CT/PET scan that showed all my lymph nodes had shrunk even more, which tells me that the "chemo chemicals" must still be having a lingering, on-going effect inside me (my interpretation, anyway). A blood test at the same time showed that my white blood cell count and red blood cell count have never been lower, which is a good-news / bad-news story. It means---I assume---that the blood test confirms that the chemo-chemicals are still at work inside me (good news, I guess), but it also means that my immune system is quite vulnerable right now and the low score on the red blood test means it's no wonder I feel tired sometimes, although I still get out for a heavy-duty bike ride when gardening chores let me get away.

Odd, but the weight reduction I worked hard at, from the low 190s down to the mid-170s has crept back the other way. The fatigue sometimes overcomes the discipline of getting back on the bike as often---maybe. Or maybe it's just an excuse. I am hungry all the time.

There are days when all this just simply makes me feel old, but I try to sleep it off and get going again as best and as vigorously as I can. Just a three-hour drive to visit relatives can leave me feeling pretty wiped-out. Sometimes I feel like it affects my mental vitality. I just feel sort of dull, withdrawn, and anti-social... not very conversational. But then, I never was exactly a social butterfly. But I try to stay conscious of that and act to counter-act it. And then again, I wonder if I am pushing too hard, too fast, trying to resume normalcy. Maybe my expectations are not realistic.

Work? I have been back in the office full time---again, "normalcy"---since March.

All things considered, it's all been rather miraculous. And I am grateful for medical science.

Lots of innings left to go in this ball game

Monday, March 8, 2010

Round 6

It has been 11 days since I concluded round 6---the final round---of FCR (fludarabine, cytoxin, and Rituxan). At the moment, I am feeling pretty darned well, but it took me a bit longer after treatment this time to be able to say that. No doubt about it: It knocked me off stride a bit more this round.

Again, not to appear to be whining, but just to be clear to any fellow CLL patients who might be wanting to hear it straight---my "normal" smooth sail was a tad stormier (but not terribly so) in this final round.

No problems whatsoever on days 1, 2, or 3 of the chemo treatment. Out shoveling non-stop snow each day.

No problem on day 4, which was just a visit to N.Y. Oncology for a Neulasta shot, a sort of booster for the immune system. That night I started feeling very tired, wiped out.

The morning of day 5, I threw up and immediately started feeling better, but still very tired. I pretty much stayed horizontal all weekend, watching the Olympics (some comeback by the U.S. hockey team with 20 seconds left!) and reading. I also gained, and still have, a 4" by 6" patch of super-sensitive skin just above my elbow. Not unheard-of. I hope it fades away.

By day 8, I was back on my indoor bicycle and gaining energy each day. Day 12, Nancy and I went snowshoeing at nearby Charleston State Forest (what a great place that is. What took us so long to find it?) and back again the next day for about five miles of cross-country skiing. (Darned tired after that.)

Day 14---today---I have to say I feel better than I did before I began treatment back in September. I have more energy. I am sleeping better.

What's next? On March 21 a more-or-less-final CT scan to measure the reduction in lymph nodes, and March 25 another blood test to see how the various kinds of white blood cells are doing. Then we start monitoring every few months to see how well the remission holds.

Then I hope it will be a very long time before I have to re-open this blog.

Monday, February 22, 2010

A Bump in the Road

There was bound to be one somewhere.

I hesitate to even mention it. I don't want to alarm friends and family, or sound like I am whining. But I owe it to other CLL patients to tell it like it is.

Last week I was told that the little zit I had on the top of my ear was some sort of skin cancer.

It's something CLL patients are supposed to watch out for. Statistically speaking, we have a higher susceptibility to it than "normal" people. I have had various treatments on my face for supposedly "pre-cancerous" cells from time to time for the past 12 years, so I can't be surprised.

From what I read, I suspect this is from severe sun burns as far back as childhood, or when I worked as a lifeguard when in high school and college, back when nobody I knew had ever heard of "sun block."

I refuse to worry about it. That is not to say I am going to ignore it. I'll deal with it as systematically, rationally, and thoroughly as I can.

But to all you other CLL people: Statistical probabilities can become very real and very personal.

Friday, February 5, 2010

Round 5 Report

It's February 5th, one week since I finished round 5 of chemo. With one exception, nothing is any different than the past several monthly rounds.

That exception is that on Monday of this week (the 1st), my nose started running spontaneously. My sinuses fizzed up. I have had that from time to time before, and it generally lasts about five minutes. Not this time. It gushed for two days---a full-blown cold. Rats. I had worked so hard over the past six months or so to avoid colds and flu. It was the reason I had gone into this self-imposed semi-quarantine, avoiding crowds and high risk people and high risk situations. And now I had failed. Was it that rare restaurant dinner on Saturday night? I will never know, but that was an avoidable risk.

Not to exaggerate the significance of this, but colds and flu can lead to pneumonia and pneumonia is what kills people who have what I have.

I think I can safely say now---three days later---I have dodged the bullet. I am feeling quite well. I have ridden my bike in the basement for two days in a row again, after not feeling up to it for the previous five days, and once again gaining ground. My brain is still buzzing with chemo-induced hyperactivity. Maybe these bursts will help me get that book written!

Sunday, January 10, 2010

Round 4

I finished round 4 of chemo on December 30th. I must say there is very little news to report, and that is a good thing.

So far I am so very lucky: practically nothing to complain about, whatsoever. The sequence of events has been just about identical with every monthly round--
1. Spend just about all day of day one getting the stuff trickled into my veins (but took only six hours this time, not eight; I guess my body has quit rejecting the stuff.)
2. Two uneventful hours each day on day two and day three
3. Feel a steroids-induced sort of "caffeine buzz" for about five or six days during and after the chemo infusions
4. Crash with extreme fatigue for about three more days
5. Gradual day-by-day return to normal

Is that "it?" Pretty much. A few "cold sores," which are actually an eruption of herpes viruses probably all of us carry inside us, waiting for a suppression of immune system as an opportunity to erupt. After monthly cycle 3 I had some burning and numbness in my big toe for about 48 hours. After cycle 4 I have had some "lightning storms" in my calf muscles making for some non-stop (but small) twitching, but hard rides on my indoor bike, hot showers, and slathered-on BenGay seem to be making them gradually go away.

Although my oncologist dropped a hint that he might want to go beyond six cycles (why push my luck?), I doubt it will happen. So, just two more cycles to go, one at the end of January and one more at the end of February.

To wax philosophical for a moment, this experience has been thought-provoking, to say the least. The financial cost of it all (to someone; my health insurance has been remarkably good so far), plus watching Nancy's 95-year-old father get repeatedly sent to the hospital for questionable expectations, make me think hard and often about what I should do with this second gift of life. Just muddling along seems insufficient.