Wednesday, December 12, 2007

Keeping it simple

Dave was scheduled for more Rituxan today, but he didn't go in for it. His Absolute Neutrophil count is 225 (last week was 429) and his Absolute Lymphocyte count is 630 (last week was 605.) He left messages for his doctor yesterday morning and again this morning expressing concern about his low white counts, but no one returned his calls. He also called the Oncology Clinic this morning and left a message saying he didn't want more treatment until he'd talked to someone. But we didn't hear anything until someone called to ask why he wasn't at his appointment.

A that point, the explanations given for his low white counts were, "don't know" and "it's the disease process." Nevertheless, Dave was strongly encouraged to come in for another Rituxan treatment, because "the doctor wants you to have it" and "it will help cure the disease and then the Neutrophils will recover." Right. This kind of vague, bullshit, baby-talk drives me absolutely nuts. It's taking all of my self control right now to not turn into a raving bitch.

Deep breath.

So now, we're headed back to the hospital tomorrow for another Rituxan treatment. Stay tuned.


namastenancy said...

Maybe you should go bat-s#$t on them. That sucks. You and Dave deserve answers, not platitudes or "do this because the doctor said so. " I am so sorry! Do you know about this resource:

It's an on-line web page and clearning house for all sorts of cancer and cancer-related issues.

Anna L. Conti said...

Thanks, Nancy - yes, I'm on the ACOR-CLL list (also the CLLForum.) They are real lifesavers. I actually have a pretty good idea of what's going on with Dave's neutrophils - I read an abstract from the New England Journal of Medicine that described a late-onset neutropenia triggered by Rituxin. About 25% of the patients studied developed this problem. Luckily, as far as I can tell, none of them died. So, I'm guessing the doctor knows this, but what really makes me crazy is the fact that I have to figure all this out on my own. All I get from the health care people at Kaiser is variants on, "There, there, everything is going to be alright."

Margaret said...

Dear Anna and Dave

Hang in there. Being sick is scary enough but unfortunately the health care system makes it scarier. It's absolutely imperative to have an advocate and Anna you are a great one, though it's driving you crazy(keep breathing!).

I know the two of you are a great team and you are going to beat this thing as well as deal with the system. It's crazy to have to get our health info from the internet but thank god it's out there.

Isn't there a complaint process at Kaiser you could access?

Good Luck Today!

John W. Wall said...

Speaking of the complaint process, it looks like the Kaiser Ombudsman position is currently vacant....

John W. Wall said...

Oops. Kaiser San Diego.... Whether an ombudsman can get the docs to be more responsive anyway, I don't know.

Anonymous said...

Treatment was slightly different for me, as I only had to go in to collect my oral chemo, and for blood tests. I saw the specialist nursing team, rather than my consultant, until I pointed out to them that Dr. Strangelove might want to do a CT scan before going on to chemo round five.

(I would probably have refused the CT scan by the way)

I knew that my counts were looking quite normal, and Strangelove and I agreed to abandon my last two rounds of treatment as not needed.

Stick out for a proper discussion with the onc, that's my advice. (I'm not an expert though)