Saturday, January 28, 2006

A Hard Spot

It’s an “empty house Saturday” around here. J is off at Aunt P’s on an overnight and K is babysitting all day. C is upstairs having her breakfast of pills and yogurt and I am having my second start to the day after rising at 5:30 to make coffee and get K delivered – surly and still in pajamas – to her two young charges.

The weather continues to be too warm for winter. Yesterday, January 27th, there was water in the bird bath. That’s scary. I have news for all of those doubting Thomases’s who pooh-pooh global warming – it’s here. Today they are forecasting rain. How depressing. Three years ago, I bought myself a new cross-country ski kit and I have used it exactly three times since then. We have just not had any decent snow. What is on the ground around here right now looks like grey saran wrap.

Last Thursday, C and I spent another frustrating day at the clinic. Events of the previous week had made Thursday’s activity list somewhat confused. Due to the results of Monday’s blood work, our nurse-coordinator (kind of a girl-Friday who helps us navigate the Byzantine backstreets of the medical megalith) had managed to get us a last-minute appointment to see a nephrologist (kidney specialist) to seek an opinion on what to make of C’s declining kidney function indicators. But prior to that, we had our regular appointment to see one of the BMT PA’s (physicians assistants – those who do the lion’s share of the patient consulting at the bone marrow transplant clinic).

As part of these regular visits, C always gets a liter bag of saline to help flush the kidneys (see above) and once a week or so, a bag of platelets. On top of that, she may get a unit or two of red blood cells depending on the results of her blood draw labs. Whenever possible, we try to anticipate those needs and get the goodies ordered ahead of time because it can take hours to get blood products delivered during which time the patient just sits (or goes out for lunch, or heads for a bar, or…..fill in the blank). On Thursday, no one knew if C was supposed to get fluids, or platelets, or RBC. So we kind of sat and watched the general flow of medical miracles as they were delivered to others sitting around us in the infusion room. Eventually, it was decided to give fluids (da!!!), and platelets, but no RBC’s.

Meanwhile, we were watching the clock because we had this 3 PM appointment with the nephrologist (type that 10 times real quick) on a different level of this same building. C was able to get her bag of fluids done in time, but the platelets were still pending when we were paroled with a temporary hall pass to go see the kidney doc. After a couple of blind alleys, we found the check in desk for kidney patients. It was in kind of a “catch-all” clinic that included lung disorders, transplants (it didn’t say what kind), empathitis (people who care too much), and amphidigititus (webbed fingers). It also shared a waiting room with the pharmacy so you were guaranteed a high level of coughing, sneezing, drooling, and general leaking from parts of the body that you don’t want to know about.

We arrived at the check in desk to be greeted by the ever-present-guardian-to-healthcare with an unidentifiable third-world accent that pretty much ensures that communication will be totally impossible where we went through the all-too-familiar “we don’t have you on our system” routine. It went something like this:

US: Hi. We’re here to see Dr. Kidney at 3. Name is MxXxxx.
TWR (3rd World Refugee): OK, MxxXyyy. (long pause) I daunt see you.
US: No, that’s MxXxxx.
TWR: Oh, MxXxxx. (long pause, frowning, mouse moving, key tapping). I steel daunt see you. Are you sure eet’s for today? Who made poyntment?
US: The BMT department made if for us on Tuesday.
TWR: Oh. (more frowning, tapping, mousing while starring into the computer screen). Oh, heer you are. Your poynment is for next month on twrenty free of month.
US: No. Our appointment is for today at three.
TWR: No. Eeets on twrenty free of nest month.

And it went downhill from there. The TWR then disappeared for about two hours as he left us standing at the check window while he went in search of Dr. Kidney and illumination. About the time I was deciding to write the next great American novel while waiting, he returned and explained (in his quaint fashion) that we “neeeeded sit” and they would fit us in.

We then went through another comical routine trying to explain that we had to get back upstairs to the BMT clinic so C could get her platelets. He insisted we “seeeet” and finally, we agreed that we would give him or cell number and that he would call when Dr. Kidney had an opening.

No sooner had we re-elevated to the BMT clinic when my cell phone went off. “Do you getting platelets now?” the voice said. No, I explained. We just walked through the door. “Come back now then. Doctor can seee.” OK, then. Back down to the zoo-like waiting room and look for a chair that hadn’t been leaked on. I have to say that I am not sure what region of the globe our attentive TWR hailed from, but it is someplace where gravity has bent time in ways much different from this zone. As it turned out, “Doctor” didn’t “seeee” us for approximately 50 minutes, by which time we were doing some leaking of our own.

To rein in this growing tale, the upshot was this. The kidney doctor said that C had about 12 percent kidney function at the moment. This is down from about 25 percent function a couple of months ago. They suspected that the latest chemo drug was degrading her already myeloma-damaged kidneys. They recommended an immediate halt to this round of chemotherapy.

The picture she painted was bleak. Continue with chemo and kill the kidneys, or stop the chemo and hopefully see a return of some kidney function but resulting in increased myeloma activity. Rock and hard place.

We left the multi-function clinic to trudge back upstairs to an almost empty BMT clinic so C could get her allotted platelets. Then it was fighting rush-hour traffic home. It was an emotionally draining night. I didn’t sleep well, waking in the wee hours and tossing and turning until finally getting up about six.

We continue. We heal emotionally to some extent. Every day has its requirements and we fulfill them dutifully. Next week, we meet with C’s transplant doc to go over the list of options. I’ll report back.



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