Hi Jen,
Just a quick note about my MRI; I'm not sure who all knows about my episode of being disoriented while on L&D last weekend, but because of that, I was scheduled for an MRI last night. It went well (very noisy,but otherwise no real problem) and after it was over I told the tech that I was a Kaiser doc and asked if I could glance at the films. They said, "yeah, sure" so I walked over to look at them...and had, of course, no idea what I was seeing! Another tech said the radiologist was through a door behind us, so I went in and asked her if she could take just a minute to look at my films with me. Turns out she's a"neuro-radiologist." I didn't even know we had that variety.
Anyway, she looked them over and said that other than a sinus infection(which I've been battling for a decade or more) there really wasn't much else, at a quick look. Certainly no large masses, tumors, etc.
I had my abdominal CT scan today but it wasn't at Kaiser so I couldn't get to the films. I guess I'll find out something about that in a few days or so. I'll let you know when some results are in.
After feeling just about back to normal a week or so ago, I'm kinda feeling puny again. I'm tired and not much appetite. I've lost about 12 pounds in a couple of months; I don't like that much at all.
I'm seeing the hematologist tomorrow; I hope I get all my questions answered them. Ma's going along, too.
I'll let you know what we find out as we go along in this process. Until later...
Pops
Wednesday, March 13, 2002
More tests, feeling bad again.
Well, another series of tests, mixed information.
First of all, I was feeling quite well about 10 days ago, went back to work, but then started feeling very weak again. In fact, while on Labor and Delivery last weekend, I got a bit disoriented, not a good thing when I am on call for deliveries, C-sections, etc.
When this happened I told my doc, he ordered an MRI of my head which didn't show much to be concerned about (ie, no lymphomas in my brain). I'm still somewhat weak, so am on a leave of absence for a couple of weeks until we get this stuff sorted out. I'm going to see the Heme/Onc doc tomorrow which should answer, hopefully, a lot of questions.
I had my CT scan today and the results are back already; nothing very specific. Certainly no large lymphomas, though there are several non-specific findings of small but slightly enlarged lymph nodes along the aorta and one in the liver. We'll see what my Heme/Onc doc, Dr. Koester, says about that tomorrow.
My white count went up again; as of Monday it was 27,000! I kinda wish it would trend down for a change. My liver functions and other tests are completely normal now.
Kathy is still doing pretty well for having had major surgery 1 week ago.
That's all for now. We'll be in touch.
Dave
First of all, I was feeling quite well about 10 days ago, went back to work, but then started feeling very weak again. In fact, while on Labor and Delivery last weekend, I got a bit disoriented, not a good thing when I am on call for deliveries, C-sections, etc.
When this happened I told my doc, he ordered an MRI of my head which didn't show much to be concerned about (ie, no lymphomas in my brain). I'm still somewhat weak, so am on a leave of absence for a couple of weeks until we get this stuff sorted out. I'm going to see the Heme/Onc doc tomorrow which should answer, hopefully, a lot of questions.
I had my CT scan today and the results are back already; nothing very specific. Certainly no large lymphomas, though there are several non-specific findings of small but slightly enlarged lymph nodes along the aorta and one in the liver. We'll see what my Heme/Onc doc, Dr. Koester, says about that tomorrow.
My white count went up again; as of Monday it was 27,000! I kinda wish it would trend down for a change. My liver functions and other tests are completely normal now.
Kathy is still doing pretty well for having had major surgery 1 week ago.
That's all for now. We'll be in touch.
Dave
Thursday, March 7, 2002
Kathy's doing great!
Hi again,
I visited with Kathy again this morning, before I go to work this afternoon, and she is still doing absolutely great. She is still stable, lucid, hardly using any pain meds and tolerated another liquid diet this AM. When she was about 20 hours post-op she asked if she could go home (maybe she isn't as lucid as I thought!). Anyway, she was to have a regular diet for lunch, her IV, nasal oxygen prongs and catheter have been removed and we walked down the halls twice before I had to leave at about 11:30.
I'll be seeing her again after work tonight and if there is any change I'll send you another update late tonight. Otherwise, I plan to work tomorrow morning and then go to the hospital at noon to bring her home.
Until later,
Dave
I visited with Kathy again this morning, before I go to work this afternoon, and she is still doing absolutely great. She is still stable, lucid, hardly using any pain meds and tolerated another liquid diet this AM. When she was about 20 hours post-op she asked if she could go home (maybe she isn't as lucid as I thought!). Anyway, she was to have a regular diet for lunch, her IV, nasal oxygen prongs and catheter have been removed and we walked down the halls twice before I had to leave at about 11:30.
I'll be seeing her again after work tonight and if there is any change I'll send you another update late tonight. Otherwise, I plan to work tomorrow morning and then go to the hospital at noon to bring her home.
Until later,
Dave
Wednesday, March 6, 2002
Kathy's surgery
Just a quick note about Kathy's surgery. It went quite well, despite some unexpected findings. She had endometriosis in addition to her (benign) fibroid tumor of the uterus. It took about 2 hours, but there were no complications.
So far her recovery has been astounding! She came to the ward in almost no pain. On arrival, the nurse asked her about her pain, on a scale of one to ten; she looked puzzled and said, "Maybe a one?"
I left the hospital at about 7:30. By then she had already downed three glasses of ice chips and had moved on to a clear liquid tray (yum!). She sipped the broth and said "This is really good." (!?)
No nausea, no usual post-op pain, alert and coherent. She is just doing superbly. I'm so glad to have at least that matter off my mind.
I'm still feeling pretty well. My liver seems to have healed; the tests yesterday were almost completely normal on the liver functions; my white count went up a bit, however, to 23,000. I suspect it will wax and wane, or perhaps it is returning to "normal" after having been suppressed by the (apparent) superimposed viral infection. Next week I get my abdomen CT'ed, to rule out any evidence of lymphoma. I'll see heme/onc Thursday, as I think I already mentioned.
I'll try to send out another message tomorrow night when I get home to let you know how Kathy's doing.
Bye for now,
Dave
So far her recovery has been astounding! She came to the ward in almost no pain. On arrival, the nurse asked her about her pain, on a scale of one to ten; she looked puzzled and said, "Maybe a one?"
I left the hospital at about 7:30. By then she had already downed three glasses of ice chips and had moved on to a clear liquid tray (yum!). She sipped the broth and said "This is really good." (!?)
No nausea, no usual post-op pain, alert and coherent. She is just doing superbly. I'm so glad to have at least that matter off my mind.
I'm still feeling pretty well. My liver seems to have healed; the tests yesterday were almost completely normal on the liver functions; my white count went up a bit, however, to 23,000. I suspect it will wax and wane, or perhaps it is returning to "normal" after having been suppressed by the (apparent) superimposed viral infection. Next week I get my abdomen CT'ed, to rule out any evidence of lymphoma. I'll see heme/onc Thursday, as I think I already mentioned.
I'll try to send out another message tomorrow night when I get home to let you know how Kathy's doing.
Bye for now,
Dave
Saturday, March 2, 2002
Quick update
Just a very quick update; my appointment with Heme/Onc is going to be on the 14th; that will give us time to get past Kat's surgery.
I'll let you know next Wednesday how the surgery went, and I'll let you know the following week how my appointment goes and what the specialist says about my prognosis, management and possible treatments. One of my first questions will be about the outside chance of this possibly being a leukemoid reaction.
I looked up the results of the flow cytometry (interestingly, the company says it's against company policy for an employee to look up his/her own labs, for some reason, but that hasn't stopped me yet) and the full report says there are "monoclonal lymphocytes consistent with (not "suggestive of," as I thought I heard) a low grade lymphoproliferative disorder like CLL." That sounds a bit more definite, unfortunately. But, we'll see what the oncologist says and go from there.
Please be thinking of Kathy next week. Again, we both appreciate all your messages and concern.
Later,
Dave
I'll let you know next Wednesday how the surgery went, and I'll let you know the following week how my appointment goes and what the specialist says about my prognosis, management and possible treatments. One of my first questions will be about the outside chance of this possibly being a leukemoid reaction.
I looked up the results of the flow cytometry (interestingly, the company says it's against company policy for an employee to look up his/her own labs, for some reason, but that hasn't stopped me yet) and the full report says there are "monoclonal lymphocytes consistent with (not "suggestive of," as I thought I heard) a low grade lymphoproliferative disorder like CLL." That sounds a bit more definite, unfortunately. But, we'll see what the oncologist says and go from there.
Please be thinking of Kathy next week. Again, we both appreciate all your messages and concern.
Later,
Dave
Friday, March 1, 2002
RE: Doug's message.
Hi Doug,
Thanks for the message. Yeah, having Kathy's surgery during this time isn't the best timing, but it was planned long ago. Kathy has mentioned cancelling/postponing it, but I don't see why we need to do that. Nothing's going to change with me in the next couple of weeks. So we're going to go through with it next Wednesday. It'll keep my mind off other things.
I'm to see the Heme/Onc doc on the 14th. We'll see what he thinks we ought to do. Though a bone marrow biopsy would be, I think, definitive, it would also be, I know, pretty uncomfortable, as they drill through a bone (hip, sternum, etc) to get at the marrow. I've seen it done; I don't want it done unless we need to. If I am lucky enough to dodge this bullet and, in fact, have just a leukemoid reaction, the white cell levels should slowly return to normal over time. I'm getting another blood count Tuesday to see if there is any major change. I also want to see if my liver is healing.
Yeah, I too, think that Dad's other medical problems probably had a lot to do with his demise, but CLL apparently progresses slowly, but variably. It can get you in just a few years, but if you're lucky, you might get decades. Not knowing what the final answer is going to be in terms of longevity could be a bit worrisome though, 'cause you don't know if you'll be around in a couple of years or not until a couple of years have passed. Kinda hard to plan your life out in any long term way when you can really only plan for a couple of years or so at a time.
Presuming I have leukemia, it puts a real damper on all our plans. I can't get health insurance anywhere else, so I'm going to be here for the duration. We likely can't plan a home for our land in New Mexico, as I might not be able to get care, unless I can figure out how to get hooked up with the TriCare system, which is the new name for the military health plan for retirees. That might be transportable anywhere I might want to move. We'll see.
Anyway, thanks again for your messages. We'll be in touch if anything changes or if there is any news. We'll let everyone know how Kathy does with her surgery next week.
Later,
Dave
Thanks for the message. Yeah, having Kathy's surgery during this time isn't the best timing, but it was planned long ago. Kathy has mentioned cancelling/postponing it, but I don't see why we need to do that. Nothing's going to change with me in the next couple of weeks. So we're going to go through with it next Wednesday. It'll keep my mind off other things.
I'm to see the Heme/Onc doc on the 14th. We'll see what he thinks we ought to do. Though a bone marrow biopsy would be, I think, definitive, it would also be, I know, pretty uncomfortable, as they drill through a bone (hip, sternum, etc) to get at the marrow. I've seen it done; I don't want it done unless we need to. If I am lucky enough to dodge this bullet and, in fact, have just a leukemoid reaction, the white cell levels should slowly return to normal over time. I'm getting another blood count Tuesday to see if there is any major change. I also want to see if my liver is healing.
Yeah, I too, think that Dad's other medical problems probably had a lot to do with his demise, but CLL apparently progresses slowly, but variably. It can get you in just a few years, but if you're lucky, you might get decades. Not knowing what the final answer is going to be in terms of longevity could be a bit worrisome though, 'cause you don't know if you'll be around in a couple of years or not until a couple of years have passed. Kinda hard to plan your life out in any long term way when you can really only plan for a couple of years or so at a time.
Presuming I have leukemia, it puts a real damper on all our plans. I can't get health insurance anywhere else, so I'm going to be here for the duration. We likely can't plan a home for our land in New Mexico, as I might not be able to get care, unless I can figure out how to get hooked up with the TriCare system, which is the new name for the military health plan for retirees. That might be transportable anywhere I might want to move. We'll see.
Anyway, thanks again for your messages. We'll be in touch if anything changes or if there is any news. We'll let everyone know how Kathy does with her surgery next week.
Later,
Dave
Thursday, February 28, 2002
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
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
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