Wednesday, January 23, 2008

Maybe it's a stretch, but ...

With all this reading I have been doing, I came across a fascinating tidbit: a microscopic organism---bacteria, really---called Helicobacter pylori. It was discovered in the early 1980s by an Australian medical researcher who established that it is the leading cause, maybe the only real cause, of ulcers (not stress).

It takes up residence in the lining of the stomach, in the mucosal tissue, and---surprise, surprise---it also causes lymphoma.

Before it gets that far it causes all manner of gastric distress, which I had a great deal of last summer and early fall: bloating, gas, diarrhea . . . all sorts of fun. I thought it was just a new phase of my lactose intolerance, which I have had for years. But maybe---just maybe---there is a connection.

It kind of makes sense. Helicobacter pylori gets into humans from fecal material, contaminated water (we draw our water here at Duane Lake from the lake, a veritable pool of goose poop, although we have a $5,000 water treatment system in the basement). And---get this---the medical literature says there is a suspected association with sheep. Could 20 years of having sheep be a possible source of this lymphoma? It sounds like a stretch.

Anyway, Dr. Schlossberg, my oncologist, was kind enough not to laugh when I shared all this with him and said it would be worth it to test me for H. pylori. The intriguing thing is that the H. pylori often can be eradicated and, when done, the lymphoma often (not always) recedes pretty quickly thereafter.

Aside from all that?

I was feeling pretty good last week. I got to the gym four times, slept pretty well. Then, this past weekend, I began having problems sleeping again and seem to have caught myself a cold. It is interesting how one's mind begins to run when you catch your first cold after being told you have an impaired immune system. Something like "Oh, crap," or words to that effect.

I also had quite a few "itchy sessions" during those bad-sleep nights: all part of the package called Chronic Lymphocytic Lymphoma. I'm not going to dwell on it, but there it is.

This morning I had my first bone marrow "extraction." It wasn't anywhere near as bad as I thought it might be. It was less painful than a dentist drilling. I should know in a week or so whether the lymphoma / leukemia has gotten into the bone marrow. The doctor said, even if it has, it doesn't mean they'd do anything.

More wait and see.

Tired as heck. Time for a nap.

Sunday, January 13, 2008

It's all about the immune system

I remember the day well. Back in early September I was working outdoors, building a porch onto the end of the house. It was a hot, sweaty day and as I was cutting some rafters for the roof, I felt a bee sting about half way up the left side of my back, right through my T-shirt. Zap. Except it wasn't quite a bee sting. It was as though the bee didn't quite finish the job. That was four months ago, and I can still feel it. It still pricks at me a couple times a day. Sometimes it itches. Sometimes it aches a bit.

It wasn't a bee sting, at all. It was shingles.

Shingles? Yeah, chicken pox for senior citizens. Herpes zoster.

How do I know?

Because I also had a rash develop in three places on my face. At first I thought it was an inflammation from rubbing pressure-treated sawdust into my skin as I wiped the sweat away. But as the days went by, it didn't go away, and it seemed to be spreading. So, off I went to the computer to look it up: Don't delay in getting medical attention, it said.

And at the emergency room, the diagnosis was, sure enough, shingles.

Then came the lymphoma diagnosis; then the enlarged tonsils diagnosis (even if four days later another doctor couldn't see it).

All three things can and do result from an impaired immune system. Who knows where that came from?

Jeff sent me a copy of a medical advisory sheet Anne's uncle, Sean, received several years ago in Ireland when he was diagnosed with the same thing. It warns CLL (chronic lymphocytic leukemia) patients to watch out for shingles. It all sort-of fits.

So, the more I read and the more I piece together the puzzle, it seems to come down to really taking care of my immune system through adequate sleep, better-than-good nutrition, and exercise.

After that, it's pot luck!

Monday, January 7, 2008

A bit of a puzzle

Today I went to see Dr. Reyes, my "primary care provider," to borrow the vocabulary of the health insurance industry. It seemed like a logical thing to do.

After all, a few days ago Dr. Olds (radiologist) had told me she thought my night time gagging was not a result of the two swollen lymph nodes just above my Adam's apple, but rather a result of enlarged tonsils. And, she said, neither radiation nor surgical removal was a good idea (for now). Funny that she saw enlarged tonsils, but the ear, nose, throat specialist, Dr. Lee, had not, back in late December, just after the biopsy surgery.

Swell. So what do I do about reducing the size of the tonsils so I can actually breathe while sleeping (a novel idea, no)?

So this past weekend I spent a bit of time reading about tonsilitis and tonsilectomies. Come to find out, tonsils are lymph nodes, just big ones with their own name. I never knew that. Plus, tonsilitis can cause enlarged [other] lymph nodes.

One Web site said: "Infected tonsils are a result of a reduced immune system, not the cause of it," or words to that effect. And, elsewhere, there is a common connection between infected tonsils and inner ear infections/problems. Interesting. I have had a gradually worsening inner ear itch for more than a year, but hadn't paid a heck of a lot of attention to it. I had bigger fish to fry than that, I thought.

So, then, what to do about it all?

Off I went to Dr. Reyes to see if maybe he might prescribe a blast of antibiotics to clear up the tonsilitis.

"I'm not impressed with your tonsils," he said, meaning they didn't look particularly enlarged to him.

"Huh? Dr. Olds said they were, and that was only four days ago. And I'm spitting up bits of tissue when I gargle with Listerine at night, plus the inner ear thing is bothering me even more lately. Is it possible that the tube they shoved down my throat for the biopsy surgery scraped my tonsils, but they healed a bit since Dr. Olds saw them four days ago?"

"Maybe," says Dr. Reyes. "But I don't think a prescription of antibiotics is in order now."

O.K., I guess. If you say so.

So what the heck am I gagging on at night?

And since the prescription by all the doctors, for both chronic lymphoma and tonsilitis (if there is that), is to do nothing, it looks like the only course of action available to me is "nutrition, exercise, sleep (still a problem there), and boost the immune system."

More reading to do. Lots more. Time to Google "boost immune system" and try to separate fact from quackery.

Time for bed.

Thursday, January 3, 2008

No radiation treatment prescribed

I had an appointment today with a radiologist, Dr. Olds. I have to say I was pretty impressed with her thoroughness and unhurried approach.

She examined me pretty thoroughly and said--basically--that she sees no compelling reason to employ radiation treatment to shrink any lymph nodes. She does not think the two enlarged lymph nodes just above my Adam's apple are the cause of my windpipe problems when trying to sleep.

She said--surprise, surprise--that she thinks the real cause is enlarged tonsils!

O.K., then, what are the options for fixing that? Remove them? She telephoned Dr. Lee (right then and there), the ear, nose, throat surgeon who removed the two lymph nodes for biopsy, and the two of them concluded that removal of the tonsils was probably not a good idea.

"Could the tonsils be getting enlarged as a part of the lymphoma?" I asked.

She said it was unlikely, but the only way to know for certain was to do a partial removal for biopsy and if you were going to that much work, you might as well completely remove them, which they had already concluded was not a good idea. Apparently tonsils are not commonly removed nowadays, even in kids, and it is an especially bad idea in adults.

I need to do more reading about that.

So what does that leave for "fixing" the sleep problem? Maybe "more of same," which, lately, has been a pre-bedtime routine of benadryl, Listerine gargling, menthol cough drops, and breathing strips across the nose (to open up a deviated septum from an old broken-nose baseball injury). OR get one of those CPAP air pumps that the sleep clinic prescribed (but almost killed me) and try to get used to it.

Lots to think about.

How ironic: my sleep problem had nothing whatever to do with the lymphoma, apparently. The lymphoma just happened to get discovered along the way.