Wednesday, February 29, 2012

Bone Density Increases!

Yes, it can be done. From last year to this, my osteoporosis has vanished and I now only have osteopenia. My secret? I take weekly fosomax, 1200 mg. of calcium daily and get plenty of bone-knocking exercise, like running and stair climbing (thank you MTA!). Let's not count falling off chairs or onto the street. Also, my mammogram came back normal.

Tomorrow I see my new oncologist. I expect good things.

Thursday, February 23, 2012

Sewing Rage

Have you ever heard of sewing rage as a defense?

Six months ago, I bought fabric to make curtains for two of the bedrooms in the country house. Just buying fabric is therapeutic for me. I took swatches and tried to coordinate colors. I lost the swatches, returned and bought what I think would look good. I have an excellent color memory.

A couple of months ago, I cut, pinned and ironed the fabric. Then I turned on my sewing machine, something I haven't done in a while. I bought this cabinet-model Singer for myself when I was 16. I never took sewing lessons, learning everything I needed to know about sewing in Home Economics. Yeah, I wanted to take shop, but I'm not that much into lamp-making. Making a stuffed dog and correctly carving a half grapefruit have made me more valuable. As a person.

I plugged in the machine. Eureka! the light worked. Then I tried stepping on the pedal. Nada. I went under the machine with my headlamp on and did some trouble-shooting. All I did was tighten the big transformer-like plug that goes into the machine and Voila! I was so tired from my efforts, I didn't sew a stitch.

It's been on my country To-Do list for a long time. Why was I putting this off? Did I think I'd forgotten how to sew? No, I'd forgotten that chronic graft versus host disease is a cruel master, making my hands shaky and no movement smooth. Also, my eyes are actually better for threading needles and other fine work without glasses or lenses because I'm severely near-sighted.

Today I was going to sew those curtains right after lunch. I went upstairs to the so-called (by the Realtor) writer's nook and set up the machine. For me, sewing is like riding a bicycle. I never forget what to do--and I'm happily off gliding over hill and dale. Never mind that the last time I rode a bike it ended in disaster.

I wound the bobbin. I threaded the needle. I put them both together and what did I get? Nothing. Something was up with the machine set-up, aside from needing to be WD-40'd. I didn't want to give up--and I'm not--I just needed a break so I wouldn't start crying or knocking back a shot of whiskey. I grabbed the machine manual and now that I've calmly reviewed it, and written this kvetch, I' will go back upstairs and try try again.

Friday, February 17, 2012

Almost Normal

I've just hired myself as personal physician for a lot of money. I'm feeling much better and have decided to ignore my oncologist's most recent recommendations and follow my own intuitive advice. Don't worry--I'm not doing anything crazy.

I've quit taking tacrolimus altogether, as well as the voriconozole which I was put on for fungus protection while taking the tac. My doctor told me to continue with it, that it can't hurt, unless you count visual hallucinations.

Two more big doctor complaints and then I'll shut up. A year ago, I went to a psychiatrist--the prescribing kind, not the therapy kind--and he told me to remain on a low dose of Celexa (an anti-depressant), but that if I needed a little more juice, I could try taking an Ativan or a half of one. He also said I could call him at anytime and discuss the situation. These few weeks have been trying, to say the least, and I have popped a few Ativan, maybe 3 a week. On Tuesday, I called my pharmacologist and left a message about how I was medicating myself and if he had any thoughts or concerns. I guess I should have said I was about to jump off the Brooklyn Bridge because he still hasn't called me back. I haven't taken an Ativan since Monday.

The other doctor who's raising my blood pressure is the liver specialist I went to see in the Fall who recommended a liver biopsy, as well as to stop taking my cholesterol medication because it affects the liver. I saw my internist last week (she's fabulous) and she wants me to go back on a similar drug, Zetia. She called the liver doctor 4 times and got no response. I sent Ms. Liver an email on Tuesday, to which she has not responded. I told my internist to write the new prescription.

I'm not advocating ignoring doctors' advice, You must, however ask many questions and raise doubts when you have them. This is difficult to do when you're ill and relying on the expertise of someone who's been trained to know more than you.

Medice, cura te ipsum!

Wednesday, February 8, 2012

My Life as a Zombie

My doctor continues to poison me. She told me to halve the amount of tacrolimus and start the voroconozole. After four days I felt bad so I reduced the tacrolimus to half of that, 2 mg. a day. I went for my bloodwork to see if the tac was at a therapeutic level. The next day, the office called to say I should stop the medication completely and come to be re-check the tac level. 10-20 is normal; I was at 30. Good thing I reduced the dose.

I have an appointment on March 1st with my new doctor at MSKCC.

Thursday, February 2, 2012

You've Heard This Before

On my Boston doctor's recommendation, I've called Memorial Sloan Kettering Cancer Center to schedule an appointment with a post-transplant doctor who worked at MD Anderson in Houston. I feel so enraged by my current doctor and her incompetent, though officious, staff, that I have to count the ways I loathe thee.

1. You put me on photopheresis for 9 months and recommended I stay on it for a year when it was obvious that it wasn't helping me. I finally quit on my own. They charge $6,000 a pop for those treatments.
2. You dismissed a dark spot on my cheek as chemo burn. I decided to have it checked by a dermatologist only to find it was melanoma.
3. You sent me to a liver specialist who discovered the reason for all the pain I was having in my side: kidney stones. I had blood in my urine, which was checked a number of times, but got no recommendation to see a urologist. Finally, I went to see my internist who referred me to one.
4. You agreed I should get a second opinion about my treatment, in Boston, which I did. That was in early November. I saw you twice since then, and you hadn't heard from my doctor, even though I knew he'd sent you his recommendations. Last Monday, you finally had the report. You prescribed a new drug, tacrolimus (Prograf) which is an immune suppressant. You agonized over the dosage, which is done by weight. When I took my first dose last week, I had a bad reaction, stopped taking the medication and called you right away. Your office manager took the message and said the doctor would call me back. The manager called me back to say I should stop the medication for a week and then take half the dose.
5. You should manage your staff more effectively. Communication seems to be lacking on both ends.

There. I feel better.