Sunday, March 31, 2002

The Packs and the Pool

Hi All,

We just got back from a quick trip to Oklahoma to visit with Kathy's folks. On arrival we had a message from SC saying they had finally gotten their pack. It apparently arrived over the weekend. Did anyone else get the pack over the weekend?

Just curious; how were they sent? FedEx, UPS, USPS, etc.?

And, so, anyone interested in setting up a pool about this matching stuff? The Doogmeister used to be the Commish of the local sports pools in SC. Would he be an obvious choice? I think HLA typing involves looking at 6 different antigens on the cells for a match. A person can match none the antigens, all or anything in between. This is ripe for some kind of pool to see who is the closest match. Say $5 to enter, with half going to the winner and half to the sib who matches (as sort of a consolation prize?).



Sunday, March 17, 2002

Marrow transplant questions

First, I want to thanks all my sibs for so willingly giving up their SSAN for the chance at winning a free trip to Denver and the opportunity to give up some bone marrow! You don't get offers like that very often.

I'll be faxing your information to our lab in downtown Denver tomorrow; the lab will then, in the fairly near future, be sending out the packs of tubes, instructions, etc. You should have the name of the contact person in the pack, but just in case, it's Kathryn Barkley at 303-861-3568.

I really don't know the details of this procedure at all (Deb asked if it was painful). I would presume that the donor would be given an appropriate anesthetic for the extraction, but I have never witnessed or even read about the procedure. Maybe we can find out on-line.
What Brian is proposing is what's called a "mini-marrow transplant"which is a relatively new procedure. Rather than completely destroying my marrow with chemo and radiation, which certainly has it's own risks, and then replacing it in hopes that the donor marrow will "take," what they do with this "mini" procedure is suppress my marrow with chemo and then infuse the donor marrow. With my marrow compromised, and the donor marrow un-compromised (immunologically speaking), the donor marrow would then establish a "graft-vs-host" reaction, attacking and, hopefully, destroying, then replacing, the diseased marrow. Interesting stuff! This is all uncharted territory for me; I have no idea what I'm in for. I just recall that the usual graft-vs-host reactions (which is usually an unwanted problem, wherein an immuno-competent transplanted organ begins rejecting the immuno-compromised body it's transplanted into) is not a pleasant thing for the body that's being rejected. But, hey, what's the alternative? As Mom says, I'd rather be on the right side of the grass so I'll have to put up with whatever comes along.

I've had questions about other folks being donors; I'm told that the best chance for a match is with a sib (with about a 25% chance for a match with any one sibling). Next best would be offspring (but my offspring's DNA has been "contaminated" with that Irish influence from their Ma), and then other more distantly related or unrelated donors. If there is no match with any of my siblings we'll see where we need to look next. I've been wondering about the utility of using cord-blood from my soon-to-be-delivered granddaughter, blood that would otherwise be discarded. I mentioned stem cell collection from unrelated donors, since we collect large amounts of it on L&D for that purpose, but Brian said they didn't use it much in adult patients. I didn't, however, mention the possibility of a grand-daughter's cord blood, but that may not make a difference to him. We'll see.

After my initial illness, during which we found this disease, I slowly recovered my strength and went back to work for almost a couple of weeks. But then, with all that was going on, I began feeling lousy again. I was not sleeping and found it hard to concentrate at work. I lost twelve pounds in two months. I've been off work again for the last week but hope to return again, at least part-time, next week. I hope things go well this time.

Diane joked that if I ended up with some of her marrow, I might suddenly get a craving to start smoking and to study Judaism. I was wondering what I might do if I ended up with some other sib's marrow. I thought if I got Deb's I might start reading a lot of paperback novels and drinking lattes. And with Dan's I'd want to go backpacking and tearing my computer apart. And with Doug's I might unexpectedly join the ACLU!

Oh yeah, and Dan said he'd gladly donate marrow to me now for a kidney at a date to be determined.

That's all for now. I'll keep you updated as things develop. And thanks again for being willing to be a potential donor for me.

Until later,


Friday, March 15, 2002

RE: Yet another update, with more!!

Hi Doug,

Great to hear from you and get your number. I really didn't have any doubts that I would.

Regarding your other message, I think you're absolutely correct that a lot of my secondary symptoms were a results of all the stress and worry over having a lethal disease and trying to put things right for Kathy before I checked out. It was getting increasingly difficult to concentrate on my patients' seemingly relatively minor problems ("I don't care about your bleeding; you think YOU got problems.") while worrying about where I should be buried, how to divide up my estate, where to buy a house for Kathy as the end neared, etc., etc. I was not sleeping at all and had not for a few weeks, was losing weight rapidly (which further convinced me that I had some rapidly progressing disease) and was just feeling crappy. The mind can be a wonderfully terrible thing to toy with, can't it?

Suddenly it's like I've gotten a call from the governor at the last minute, granting me a stay of execution. Not that anything was going to happen any time soon, but I had to plan for a worst case scenario. We'll see how this plays out over the next few months.

Regarding RE's question, they want to test sibs first as the chance of a match is about 25% with a sib (and since I have 4 sibs, that should mean I have a 100% chance of a match, right?). If that doesn't work, they'll try offspring and then unrelated donors. My staff at the clinic, God bless them, are already volunteering to donate! I'm wondering about stem cells from the cord blood of my soon-to-be-delivered granddaughter. I'll pose that question to Brian next week to see if it would be at all helpful to harvest her cord blood, which will otherwise just be discarded.
I'll be forwarding the information on all you guys to the lab early next week when I finish collecting it (Deb is still on vacation and doesn't yet know that I'm looking for her marrow). I would guess that they would FedEx out the packs soon thereafter. I really don't know of any details after that. I would guess that if there is a match that the transplant procedure would be set up in the coming months at some time convenient to the donor. I also don't what the donor has to endure to donate; I really have never been involved in this, but if it's like a bone marrow biopsy it hopefully wouldn't involve more than some brief "discomfort" as we, in the medical profession, euphemise about pain.

Thanks again or you help.

I'll add Paula to the list so you won't have to keep forwarding things to her. Thanks, Paula, for you concern and interest.



Thursday, March 14, 2002

I want you! And your marrow!

Well, I saw Heme/Onc today. Kathy and I met with a really nice guy named Brian Koester. He talked about the disease and answered questions for me. So, here's what I learned:

I really have CLL; this is not a leukemoid reaction. My continuing malaise/weakness is probably not from the disease as my white count is"only" 27,000.

This is not generally considered to be inherited despite the fact that dad died of the same disease. You guys (my sibs) do not apparently have an increased risk of getting it too.

I'm young to be getting it; usually folks are in their mid-60's or later.

The usual life expectancy is 6-10 years from diagnosis.

It's okay to drink German beer even if you have CLL!

He went over the usual treatments but said that they don't generally treat at all unless the white counts are over about 100,000 (!!!). So I'm thinking that we'll just follow my counts until I'm really sick and then I'll get some chemo of some sort. Then, while he's saying that, almost in the same breath, he mentioned some very new promising chemotherapeutic agents that hold out a hope for a cure. Then, he continued on to say that they are also doing bone marrow transplants in selected patients with a very high cure (CURE!) rate, though they don't yet have long term follow-up data.

Now, the bad news; they're looking to YOU (my sibs) for bone marrow donors!

He's serious. Since I'm relatively young and healthy, as opposed to the usual CLL patient who gets diagnosed at age 70 in acute distress, he's thinking of doing a bone marrow transplant to cure the disease, rather than just doing chemo to control it! I'm just blown away at the thought of a cure for this generally long term but uniformly fatal disease. That is not at all what I expected to be told when I went in today.

They have already drawn my blood for what's called HLA tissue typing.They're interested in contacting any of my sibs who would be interested in possibly being marrow donors. I have all the information they need except Social Security numbers on all you guys.

If I could convince any of you guys to be tested for compatibility, would you send me your SSAN and they will then FedEx you a pack of tubes and instructions to get some blood collected. If there is a collection (or "draw" fee) at your local clinic I would be more than happy to pay you back. Please don't feel forced into this; this isn't like giving up a lung, but it has to be voluntary. Kaiser will pay all costs involved in the shipping and testing of your blood specimens.

I'm just ecstatic over this news. It's so much better than I had expected. Let me know if we can test you for compatibility. If any of you are compatible, we'll eventually (over the next few week [or likely months]) get back with you on the details of the procedure. At this point I really don't know what those details would be. But I'll keep you all updated as things develop.

Thanks for your thoughts and prayers; and bye for now.


Wednesday, March 13, 2002


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...


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.


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,


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,


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.



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.