The bad news.

Well, the "definitive" test came back positive. I think. This is the high tech "flow cytometry" that I can't figure out except that it somehow sorts cells based on their size or whatever.

I got a call today from my other internist, who's watching over me while my other buddy is off for a few days. He said the test was positive and he was putting in a referral to Hematology/Oncology.

But though what he intended to say was that it was positive, what he really said was that the test "was suggestive of a low grade chronic lymphocytic leukemia."

"Suggestive." Now, I was led to believe that the test was definitive. Suggestive? I guess they really aren't sure yet (here's some denial on my part, but hey, I still can hope that I have that leukemoid reaction; my understanding is that it could take a bone marrow biopsy (yeowch!!!)to tell the difference between a benign leukemoid reaction and leukemia. And I've also found out that leukemoid reactions can be associated with various immunizations! Remember the Hepatitis A shot? So there's still some hope, I think.)

Suggestive, and low grade. Well, that doesn't sound too serious, does it? I guess how serious it is remains to be seen.

I've put in some calls to Heme/Onc to see if I can set up an appointment in the reasonably near future, though unless I get special handling as one of the staff, it may not be too soon; I'm sure they have sick people to take care of before I come in so they can hold my hand.

As if it's not busy enough around here, with us chasing my lab values, most of you may not know that Kathy is having major surgery next Wednesday. She's finally getting rid of her uterus now that it's become a major, major nuisance on a regular basis. So, I'll try to arrange my appointment (if I can get one that soon) around my work schedule and Kathy's surgery and recovery. Jen is going to come out and help us for a few days after Kathy's surgery so I can go to work and pay the bills.

So, that's the latest. I'll keep on sending out these updates as any information comes in.

Like Mom said in a e-mail today, Dad had his leukemia for 10 years [ed: it was really more like five years, it turned out] before he checked out, and that was with 1970's medicine and all his various medical problems. This may be like most men's prostate cancer; they die with their disease, not from it. She doesn't think it'll take a day off my lifespan. So there's hope(?); I may still have the big stroke I've always ( as a migraine sufferer) worried about rather that checking out from my leukemia, if I really have it.

Stay tuned.

Dave

Hoping against hope.

Hi again guys,

Perhaps I was a bit premature and unnecessarily pessimistic in my note of yesterday. Yeah, the labs aren't looking good, but I don't have proof of CLL yet. That may be proven or disproven in the next few days as the flow cytometry is completed.

I'm still hoping against hope that this a "leukemoid reaction," a thought I mentioned in a separate message to Doug today. That's a pseudo-leukemic reaction one can get in response to a viral, or other, infection. The problem is, we haven't identified any other virus to account for this possibility. TB can cause it too. Hey, we were just in Mexico, maybe I picked up TB. I'd be HAPPY to have TB right about now. I got a TB test yesterday; so far it's negative!

Yesterday I was, for the first time, starting to read up on leukemia. Big mistake! First, I need to update my references! I pulled my pathology book off the shelf and started reading. When I got to the part that said "Death generally occurs within 3-4 years of diagnosis," I had seen enough. However, my pathology book is the same one I bought in med school, what, 28 years ago? It was probably written with data collected in the '60s.

Anyway, worst case scenario, if I have CLL, lots of folks live for decades with this condition, though some expire more rapidly. If I have it, it's very mild at this point, with my white counts being "only"18,000-20,000. Most leukemics have counts over 30,000 and up to100,000. And chemotherapy has advanced a considerable way since my archaic path book was written. By the way, my internist told me today that even if I have CLL, it's so mild, they wouldn't even treat it it at this point. I'm not sure what to make of that!

Anyway, I'll let all you guys know when I get an answer. If it's bad news I'll be seeing the Hematology/Oncology folks for an evaluation.They would be the ones to manage my disease at that point.

Thanks for all your thoughts and prayers. I appreciate your concern. I'll be in touch again.

Dave

Not lookin' good.

Well, the news isn't real good. My white count is still up after four weeks of testing; probably enough time for it to drop if it were in response to a viral infection of some kind. My blood smear has been read out. I can't get specifics from my doc, who is being coy since I'm now a "patient" and not a colleague, but he just says the smear is suspicious and they want to look at it more closely.

Having an elevated white count for this long is almost, but not quite,diagnostic of CLL. The flow cytometry they're now doing is, I guess,diagnostic, and it should be out in a few days. I really don't know how long it will take.

If I have CLL, I'll soon be seeing the hematologist for, likely some kind of chemo. I'll let you know more when I get some real answers,however.

I'll be in touch.

Dave

No news yet....

For anyone out there who's been wondering what the followup smears of my white cells showed...well, there's no news yet. As of late Friday the pathologist had read out the slides but the reading wasn't in the computer before I left work at about 6PM. The reading will likely be available by tomorrow, but I won't be in the office then (part of my new reduced office schedule), so I won't know until Tuesday. I'm also due for some more repeat blood counts and liver functions then, too.

I'm still slowly feeling better and better, but I'm recovering more slowly than I'd like. I'll send out an update, probably Tuesday, but certainly no later than Wednesday.

Just in case you're wondering, there seems to be only a weak inheritance pattern for CLL, so we aren't all at high risk for this just 'cause dad had it.

Later,

Dave

I've been sick.

I guess all of you have heard at least a little about the fact that I've been experiencing a prolonged, rather bizarre and potentially worrisome illness. That great purveyor of information, Mom, has let you know some of the details, but since she hasn't known all of what's going on (hell, I don't really know what's going on), I thought I'd send out an update about what we think is going on, what we know and what we're worrying about.

About a month ago I got a hepatitis A shot, since Kathy and I travel a lot, and go to Mexico a time or two each year. A few days later I started having body and joint aches, which are said to be common side effects (in 20% of those getting the shot), but I didn't worry too much; just took tylenol for the aches and waited for it to go away. Kathy got the shot too and had no side effects whatever.

After about six days I started running a low grade fever too. I took more tylenol and Motrin and waited for it to go away. After about two weeks of aches and fevers and feeling so weak that I had trouble climbing the stairs, I went to see a doctor. Now, you need to know that I've never been to see another doc since I became one except for hernia and knee surgeries. That'll tell you how bad I was feeling. We did a blood count and found my white cell count to be over 20,000(about 6-10,000 is generally normal). More interesting (?) was the fact that most (70%) of the white blood cells were lymphocytes (about 10% is normal), not "segs" like you generally see in an acute bacterial infection. Lymphocytes can be elevated in viral infections, but viral infections usually lower the total white count but raise the percentage of "lymphs" (ie, a virus would be expected to drop my white count to,say, 4 or 5, 000 while it raised the percentage of lymphs).

A couple of days later I was feeling worse, temps of 101 or so. I went back and had more tests done. Now we found that I had abnormal liver functions as well. The good news was that I was negative for HIV, hepatitis (at least, the A, B, C, D and G forms), mono (which I was SURE I had), and the so-called "Torch" viruses (don't ask).

I felt so bad, I was off work for essentially two full weeks. I've never missed two weeks of work or school in my life!

A week after my first battery of labs had been done we repeated the blood count and liver functions. One week ago. my white cell count had dropped from the initial 20,000 to 14,000, still very high, but improved. I still had 66% lymphs, however. The liver functions were also improved, but abnormal.

We repeated the labs again yesterday; the liver functions continue to improve, but my white count is back up to 18,500, with 70% lymphs.We repeated the mono test and it's still negative.
Now, my internist, who is a real doc and not a gynecologist like me, says he thinks this is just a rogue virus of some kind and that everything is likely to resolve without any further intervention. I can find nobody that really thinks it was caused by the hepatitis A shot (hey, Bob,could I shake down the drug company for some cash for this, maybe?).

The worry is that a high white cell count with a lot of lymphs could be chronic lymphocytic leukemia, the kind that dad had. The pathologists are looking at my white blood cells today and are considering more sophisticated testing to rule this disease in or out. And that's where we stand, as of tonight.

I'm actually feeling a lot better (but not totally well) and was able to operate all day yesterday (three useless uteruses removed from their former owners!) and work in the clinic today.

I'll let you know if I hear more about my white blood cell smears and any other tests we do.

And now, I've got to go do my Peregrination (hey, I got a note from my doctor saying I could be late; what's YOUR excuse?).

Later,Dave