Seasons Greetings from the desert. We made the now-annual pilgrimage about 10 days ago barely ahead of the first big snows at home. And it looks as though--with the Super El Nino in the Pacific Ocean--this is going to be a big snow winter. A good trade from our perspective of wobbly legs and unsure balance. But also good for the Great Basin. Skiers rejoice! Economy rejoice!
This blog has surely become rarer as my cancer stays firmly in life's rear view mirror. But there is health news that requires this post for whatever remains of my audience. Some 18 months ago now, we took a wonderful trip on a faux paddle-wheel steamer from Memphis to New Orleans. Actually, it was a brand new vessel. It was a great week. Great peeps on board, great service, good tours and excellent accommodations on the boat. The only drawback was that by the end of the week, I was exhausted. We really didn't do much more than the walking that is required to visit any large city and the tours that were laid on in the smaller towns. The latter involved maybe a dozen blocks of walking most days, not much out of the ordinary. Except that for me, apparently it was. I came home with pneumonia.
Still, perhaps, not noteworthy. But I contracted the pneumonia while still getting plenty of daily and nightly rest. Not so good, perhaps suggesting some sort of cumulative effect of exertion. And, I had had the shots! Turns out the pneumonia shots are about 50% effective.
But, to reiterate, not all that much to write home about. So, I don't think I have posted about it.
I did have my usual upper respiratory problems that fall as I had to visit an out-patient facility here to get some antibiotics.
This fall, I decided to get back to getting more physically fit, at least to the extent that my condition would allow. This was precipitated by some bursitis in the scapular region of my upper back that suggested to me that I was sedentary beyond belief. Some physical therapy helped that dramatically. So I joined an old persons' rehab unit attached to one of our assisted living places. In typical, no-good-deed-goes-unpunished, fashion after 6 weeks of working out once a week, I was getting shorter of breath, that is less, rather than more, fit. This was not happening during my workouts which typically left me feeling better than when I went in. (These workouts involved about 20 minutes of mild cardio on a bike, and then 40 minutes of core strengthening and balance work.Nothing to write home about.)
Another chest x-ray that showed some cloud shadows in a few lung lobes suggested pneumonia had recurred. Another course of levaquin and the problem went away again. I waited a few more weeks and began workouts again. My doc suggested that I fill another levaquin Rx to take with me to AZ. (Smart him!)
I signed up through the Silver Sneakers program with a gym nearby. I resumed working out--once only--and was, pretty immediately, short of breath again! An out-patient clinic suggested a chest X-ray the outcome of which was suspicious enough that they said for me to begin the dose of levaquin immediately and ordered a high res chest CT scan. Christmas holidays have intervened and as yet I don't have the results of the CT. I think they will confirm a recurrence of the pneumonia at the least. Merry Christmas, dude! The good news is that the levaquin once again appears to be doing its job. I am getting some sleep. That, at least, is positive.
But, I am pretty unhappy about all of this. My plan, with the chemo and the cancer receding into history, was that I would get myself fit. That outcome appears more elusive to me now. I fear that my immune system has been so badly damaged by my cancer therapy, that more is to follow. After all, the sequence of attempting to improve my physical condition seems to lead to disease. Don't know what to think, at this point.
Still, however, for the most part, I am enjoying what I can do. I am living each day to the fullest, within my greater limitations.
Spooky thought: We have booked a Jazz Cruise out of Ft Lauderdale in mid-January. Will my health be good enough for this? Time will tell.
Friday, December 25, 2015
Saturday, August 22, 2015
Happy Anniversary!
It will have been 4 years since I was diagnosed with Mantle Cell Lymphoma on August 25. A routine colonoscopy on August 25 2011 turned up a small mass in my duodenum and life changed. Intensive chemotherapy followed, which knocked out all signs of cancer. My oncologist, not satisfied, prescribed further chemo every 6 months for 2 years.. Those of you who have read this blog from the get-go know all of this. At the end of this regimen I was cancer free. So far as I know, I am still cancer free.
Mantle Cell Lymphoma was a new, rare cancer when I developed it and the only study of it was a trial at Cornell. Patients were more involved than I was, that is, their marrows contained a much higher percentage of Mantle Cells at the start of treatment. Their median survival was 3.5 yrs. It was the only survival data I knew of then or now. Ergo, I have survived past the median for this study, at least. Probably not a good idea to generalize too far from all of this except to enjoy the moment.
I have had occasion to mention that I am a Mantle Cell survivor to a couple of docs in the course of treatment for other, more homely ailments. They express surprise, in such a way as to lead me to believe, I am very fortunate. And, I am.
Mantle Cell Lymphoma was a new, rare cancer when I developed it and the only study of it was a trial at Cornell. Patients were more involved than I was, that is, their marrows contained a much higher percentage of Mantle Cells at the start of treatment. Their median survival was 3.5 yrs. It was the only survival data I knew of then or now. Ergo, I have survived past the median for this study, at least. Probably not a good idea to generalize too far from all of this except to enjoy the moment.
I have had occasion to mention that I am a Mantle Cell survivor to a couple of docs in the course of treatment for other, more homely ailments. They express surprise, in such a way as to lead me to believe, I am very fortunate. And, I am.
Friday, March 13, 2015
News about the big C
The other evening I watched HBO's program called Vice. It is an investigative news show. I don't know how they came up with the title since it doesn't seem to have actual vice as its subject matter. (Bill Mahrer is an Executive Producer.) Of interest here is their Special Report on Cancer which is the first show of their 3rd season. (I actually missed the debut but was able to view the program with the HBO On Demand feature.)
They were so excited about the cancer news they reported that their conclusions seemed almost risky. A cure was mentioned. Featured was new research in which cancer cells are identified by viruses such as the cold virus, HIV, small pox, rabies and so forth. Historically, there is evidence of cancer remission in people who have had a dog bite and then had to have a series of shots to prevent possible rabies. Apparently such a series introduces live virus into the body. Anecdotally, individuals have then gone into remission from their cancers.
This finding has been followed up, experimentally. A common virus is tweaked so that when injected it has the effect of showing one's immune system's T cells which cells in the body are cancerous. The T cells, natural killers, attack the cancer cells which they now can identify. The T cells don't attack any other cells and the injected viruses don't produce their regular effects, e.g., measles, because of the genetic tweaking.
The program followed several children with leukemia who were dying. Medically, there was no more chemo or radiation they could do. Within a month after virus injection, their cancers were no longer identifiable. One doc took a bone marrow sample from one side of his patient's pelvis and saw no cancer cells, He couldn't believe it, so he took another sample from the other side. Still no cancer cells! These wonderful little bald-headed kids were shown months later with full heads of hair. Marvellous!
For solid tumors they followed two middle-aged guys who were ready to die. Both had brain tumors. Here they showed the brain being exposed, a biopsy taken--to make sure they were getting into tumorous tissue--and then the direct injection of virus (measles if I recall) into the tumor. Weeks later the tumors were not detectable.
This type of treatment is not for the weak of spirit. It produces high fevers (105-106 degrees), nausea, excruciating pain and sometimes coma for up to a week and perhaps longer post injection, so it is quite debilitating as the immune system goes about the business of killing all the cancer. (The treatment viruses are quite potent.)
The FDA is fast tracking all of these viral treatments of cancer because the results are so amazing. One doc thought the procedures would be standard by 2016. The only summary beyond the above case studies I heard was from the doc using the cold virus. He had done 40 patients. 90% were cancer free.
Of course, I hope not to have to find out any of this myself, firsthand. Right now, I am good. But it is wonderfully hopeful for the entire population of cancer patients out there that a general cure may be in sight.
I want now to update myself on any new data in re Mantle cell lymphoma. Just curious...
They were so excited about the cancer news they reported that their conclusions seemed almost risky. A cure was mentioned. Featured was new research in which cancer cells are identified by viruses such as the cold virus, HIV, small pox, rabies and so forth. Historically, there is evidence of cancer remission in people who have had a dog bite and then had to have a series of shots to prevent possible rabies. Apparently such a series introduces live virus into the body. Anecdotally, individuals have then gone into remission from their cancers.
This finding has been followed up, experimentally. A common virus is tweaked so that when injected it has the effect of showing one's immune system's T cells which cells in the body are cancerous. The T cells, natural killers, attack the cancer cells which they now can identify. The T cells don't attack any other cells and the injected viruses don't produce their regular effects, e.g., measles, because of the genetic tweaking.
The program followed several children with leukemia who were dying. Medically, there was no more chemo or radiation they could do. Within a month after virus injection, their cancers were no longer identifiable. One doc took a bone marrow sample from one side of his patient's pelvis and saw no cancer cells, He couldn't believe it, so he took another sample from the other side. Still no cancer cells! These wonderful little bald-headed kids were shown months later with full heads of hair. Marvellous!
For solid tumors they followed two middle-aged guys who were ready to die. Both had brain tumors. Here they showed the brain being exposed, a biopsy taken--to make sure they were getting into tumorous tissue--and then the direct injection of virus (measles if I recall) into the tumor. Weeks later the tumors were not detectable.
This type of treatment is not for the weak of spirit. It produces high fevers (105-106 degrees), nausea, excruciating pain and sometimes coma for up to a week and perhaps longer post injection, so it is quite debilitating as the immune system goes about the business of killing all the cancer. (The treatment viruses are quite potent.)
The FDA is fast tracking all of these viral treatments of cancer because the results are so amazing. One doc thought the procedures would be standard by 2016. The only summary beyond the above case studies I heard was from the doc using the cold virus. He had done 40 patients. 90% were cancer free.
Of course, I hope not to have to find out any of this myself, firsthand. Right now, I am good. But it is wonderfully hopeful for the entire population of cancer patients out there that a general cure may be in sight.
I want now to update myself on any new data in re Mantle cell lymphoma. Just curious...
Wednesday, February 18, 2015
Not much...
"Ho hum", as they say, "another shitty day in Paradise". I first saw that as a bumper sticker in Hawaii many years ago, and have never forgotten it. It is descriptive of life here in the Valley of the Sun. We have been here since mid-December and will return to Cache Valley at the beginning of April. That is, roughly, another six weeks in Paradise. Today it will be 80F, just right for reading in the shade on the patio. Actually, it has been shorts, tees, and sandals now for quite a few weeks and I do not favor putting socks back on. The only drawbacks are the air quality, which is typically always in the "moderate" range given that this is the 4th largest metropolitan area in the country. That is, there are a bunch of peeps always driving around. In fact, the accident reports on the local NPR station usually start at 6 a.m. A breezy day or inclement weather are the only ways in which the air quality improves, and those are rare. But these are a small price to pay.
Ironically, the air is probably as good or better in Utah since they are having a mild, dry winter absent of many cold weather inversions. Go figure. I doubt such news would have changed our plans much.
The entertainment scene here this winter has been rich with jazz and theater. And the restaurant scene is superb. It is the latter which will be the most difficult to leave. Regardless, at this time of year, I begin to think about spring fishing, so I am looking forward to that upon our return to Utah.
My health is better, but not completely so. I continue to have chronic, upper respiratory drainage with some expectoration from the lungs. However, it is much better than it was in Utah and about where the antibiotics would get it when I was taking them. My decision not to take anymore, I think is validated. None of this impairs my activities. My lungs and nasal passages are usually clear.
I have recommenced walking. Got three outings in the week before last and started again yesterday for this week. I have a course laid out in a park just a few blocks north of here and go there while Jan does a Silver Sneakers class. I do about 1.3 miles (circa 3000 steps) mostly on the flat in about 27 min, aerobic all the way. I can feel my conditioning improving slightly at this point. I cannot sustain daily outings as my knees and lower back give out. But every other day now is a goal. We'll see. The limiter is my back and knees. Too much and I am set back with weakness and pain for days.
We won't discuss weight! Frankly, I don't want to know because it will mean restriction of the good times we are having eating out, and there is time for such restriction when we return to Utah.
No cancer signs!
All for now....
Ironically, the air is probably as good or better in Utah since they are having a mild, dry winter absent of many cold weather inversions. Go figure. I doubt such news would have changed our plans much.
The entertainment scene here this winter has been rich with jazz and theater. And the restaurant scene is superb. It is the latter which will be the most difficult to leave. Regardless, at this time of year, I begin to think about spring fishing, so I am looking forward to that upon our return to Utah.
My health is better, but not completely so. I continue to have chronic, upper respiratory drainage with some expectoration from the lungs. However, it is much better than it was in Utah and about where the antibiotics would get it when I was taking them. My decision not to take anymore, I think is validated. None of this impairs my activities. My lungs and nasal passages are usually clear.
I have recommenced walking. Got three outings in the week before last and started again yesterday for this week. I have a course laid out in a park just a few blocks north of here and go there while Jan does a Silver Sneakers class. I do about 1.3 miles (circa 3000 steps) mostly on the flat in about 27 min, aerobic all the way. I can feel my conditioning improving slightly at this point. I cannot sustain daily outings as my knees and lower back give out. But every other day now is a goal. We'll see. The limiter is my back and knees. Too much and I am set back with weakness and pain for days.
We won't discuss weight! Frankly, I don't want to know because it will mean restriction of the good times we are having eating out, and there is time for such restriction when we return to Utah.
No cancer signs!
All for now....
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