Tuesday, March 18, 2008

Slow Motion

After a couple months of intense investigations, reading, appointments, etc., it seems as though things have gone into a slow-motion mode. Easy to be lulled into a sense of false normalcy.

Reality check: We got word today that college friend Art Gruhn died today of cancer.

I still haven't rescheduled the appointment at the Dana Farber Institure in Boston, and probably won't. More likely, when it comes time to schedule an appointment for a second opinion, it will be at the Mayo Clinic in Rochester, Minnesota. Two people whom I "met" through CLL Web sites and a List-serv say that there are doctors at the Mayo Clinic who specialize in what I have--CLL---whereas the doctors at The Dana Farber Institute are "merely" cancer specialists, but not specialists in the kind I have. If the insurance company is going to pay for only one second opinion, I had better get it from the best.

I won't even schedule it until I have the results from the newest batch of tests, the tests recommended by Dr. Terry Hamblin, the specialist in England who was kind enough to read my test results and recommend others. The ones he recommends are for "prognostic indicators" he did research on, largely looking for special chromosome mutations, and measurements of immunoglobulins... key to resistance to secondary infections.

My local oncologist, when I showed him the correspondence from Dr. Hamblin, said (basically), "Well, sure, O.K." Since they were drawing blood for other tests, anyway, it seemed like a simple enough thing.

It's been a week and still no call from the doctor to say, "Your test results are in." More slow motion. I'll be back in his office in two days, anyway, so I'll be patient until then.. Maybe that's why they call clients of doctors "patients."

Meanwhile, the sleep problem lingers. The new "auto CPAP" machine actually lets me inhale fully (what a concept!) but it also inflates my stomach (just too much pressure and I am not allowed to adjust it), so I have been trying it only each alternate night, letting my stomach recover for a two days before trying it again. The darn thing costs $266 a month to rent, a rip-off of the insurance company by the vendor if ever there was one. I think it's seen the end of its expensive trial run. I think I could make a better one with PVC pipe and a small fan with a dimmer switch. Meanwhile, Nyquil is the answer. Boom---out like a light, and a lot cheaper.

Thursday, March 6, 2008

Pushing for more information

I keep reading that people in my position---diagnosed with CLL---have to be their own advocate, and aggressively so. I am beginning to see that this is true.

Days went by and I had not heard back from the Ear, Nose, Throat (ENT) doctor about the results of my most recent CT scan (the one he ordered at my behest) intended to see if the various glands and lymph nodes in my throat had grown any and were crowding up against my wind pipe or against the base of my tongue. So I called, and called again the next day. Finally I got a call back from a clerk (administrative aide?) at his office to say she was surprised I hadn't heard any results. Yup; me, too.

Today, the ENT doctor did call---thank you, very much---and said that there was no growth in my lymph nodes since December (approx. 60 days). That's pretty good news!

I have also had trouble getting a reply from my oncologist about arranging for the additional tests recommended by Dr. Hamblin, in England. His head nurse actually seemed rather annoyed that I had actually obtained advice from other sources, or that I had made a decision (in the absence of timely advice from her boss) on my own to postpone the appointment at the Dana Farber Institute.

"You did what???" she asked.

"What makes you think the Dana Farber Institute even needs those tests?" she sniped.

"I don't know. It just seems sort of logical that if one of the top CLL experts in the world thinks it would be advisable, then the folks at Dana Farber might benefit from the information in evaluating my case."

So, anyway, she dumped the job on me of finding out from my insurance company if it will pay for these tests.

I think I need to talk to her boss. I am inclined to think if he---the doctor---says the tests would be helpful, the insurance company would be a lot more inclined to say "yes" than if I ask.

Nobody said this would be easy.