This week's experiences at the HMO clinic were discouraging. It's difficult getting info from these folks. You see a different caregiver each time, and you never know who it's going to be. They don't seem to communicate with each other very well. And some days, like today for instance, we get to the designated clinic at the designated time, and no one is at the reception desk. Well, this is not unusual, and the waiting room is full of other patients, so we just take a seat and wait. And wait. More patients arrive. Soon we start comparing notes:"When was your appointment?"
"Ten minutes ago, and yours?"
"Now."
Then Dave heard the sound of a dot matrix printer, coming from somewhere else on the eighth floor. He went off to investigate and came back with the news that everyone was supposed to check in at the other clinic on the other side of the building. So everyone gets up and troops over there. Dave goes in for his infusion. More patients arrive at the first clinic and start waiting for the non-existent receptionist. This happens frequently. When you see an empty desk, you can never tell if they just stepped away for a bathroom break, or for lunch, or if they're on vacation.
This last round of chemo was harder on Dave than the previous ones. He spent most of Friday in bed (after we got back from the hospital.) I'm not sure what's going on with his blood work because we have not been able to get a copy of the last two reports. I'm not sure what the plan is for his treatment/medications, because no one could answer those questions. I finally got an outside source to answer my question about Dave's CBC from last week - the blood showed, "many lymphocytes with cytoplasmic projections which appear like hairy cells." I was concerned about whether Dave might have Hairy Cell Leukemia. Dr. Terry Hamblin from the acor CLL forum, said that this happens sometimes, but Dave's profile still looks like CLL.
So I was somewhat relieved. But I'm still worried about other stuff. Like, shouldn't they be cutting back on the ProCrit now that his Hct is near 30? (That stuff has some potentially nasty side effects.) And wouldn't it be a good idea to give some more B-12 since it had such a good effect? And how bad is his WBC now (it was climbing into the stratosphere on Tuesday)? We only see the doctor once a month, and the other so-called "avenues of communication" are useless. Right now I'm feeling too worn down to muster the energy to be the kind of pain-in-the-ass that gets her questions answered.
Dave's still looking pretty good:
3 comments:
Hang in there
When I was w/ Kaiser, my main doc gave me an email addy by which we could communicate and it was EXCELLENT for quick back and forths like lab results, a med question, etc. It is a within-Kaiser system but I guess only some docs are comfortable w/ it - it is definitely worth tracking down a main provider for Dave who might be willing to have that email correspondance w/ you.
OK - I'll give it another try. She didn't answer the first one we sent. but it may have been indecipherable - they only allow you take up 1000 characters per message - yes characters (including spaces.) So our message kept getting kicked back, cut off, etc and we ended up sending it split into three sections. Which means, I guess, one short, simple question per email.
Hello Dave and Anna,
Amber just sent me this link--what a brilliant idea to post information this way. It gives us all a chance to know how you're doing and at the same time be more conscious of what kinds of support we might offer you that would genuinely be of VALUE! Thank you SO much for putting this together, and keeping it SO current.
Love, Sidney
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