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!

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.

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.

Tacrolimus OD

I don't mean to be melodramatic, but it was disconcerting. I took my first dose of tacrolimus Tuesday night and got sick several hours later. I woke up feeling nauseous and actually vomited a little. I still felt queasy but went back to sleep. In the morning, I still felt odd, but got up and had some coffee. Like a good patient, I monitored my temperature throughout.

I went to the Internet for information on tacrolimus dosing. It was clear that I was taking too much, maybe double the dose I needed, maybe more. I skipped my morning dose and called my doctor at 9 am. I described my problem to her office manager, who said the doctor wanted to speak with me. Hours later, I called again and was told the doctor wanted me to stop the medication immediately. In a week, I was to re-start it, but at half the dosage she prescribed. Needless to say, my nausea was a sign that I was taking too high a dose. Never hesitate to question your doctor.

On another drug-related note, I got up this morning, and before I even made coffee, I started taking down the curtains in the guest and living rooms. They are washed, dried, and might need some ironing. This is what prednisone can do to you.

The Best Birthday

I just finished opening my birthday cards. Mariel called me from Peru; I missed Mark's call and Harry's calling later. I went for a massage and manicure this morning and tonight Marty's taking me out to Babbo, an Italian restaurant in the West Village.

I also went to see my oncologist this afternoon. We finally spoke about Dr. Antin's recommendations, and developed a strategy for combating my skin gvh which is getting worse.

I will increase prednisone to 40 mg from 20. I will start taking tacrolimus , an immune suppressant, again. I will take voriconozole, an anti-fungal. Am I happy about adding drugs and increasing prednisone? Of course not. But I understand I can't sit by and let my skin rot. It's not just the itchiness, which I can live with. I am the Queen of Cream. My skin is thickening, which means if you press on it, it feels hard and taut. The patchiness is also creeping up under my neck, which means the face is next and I won't have it. At least I now have an explanation (excuse?) for why my tummy is fat no matter how much abdominal work I do.

The meds can wait. The drug store has to special order 2 of them anyway. I'll start my new regimen tomorrow. Tonight I plan to continue having the best birthday I've had in a long time.

Latest Liver Levels

My doctor called today with my liver panel results. She's very pleased with the decline in alk-phos level, at about 575 right now. That's still too high, but we decided to do nothing further for now.

I had Moh's surgery on a basal cell carcinoma today. Everything went well, and I now have a puffy eye, cheek and the beginning of bruising. Some day, I will be beautiful.

3 Good Things

We returned from our trip to Peru, where we spent many wonderful days with our daughter. On the final day, Harry arrived and we all went out for burritos. Marty and I experienced a little altitude sickness, and climbing 500 steps was no picnic, but we really got a taste of the country.

For someone who's immune compromised, I did very well. My NYC doctor was worried about the problems I might face. She asked if there would be a doctor on the trip (n0) and oxygen tanks available if I got short of breath (no). Marty ended up with food poisoning on our last day. We weren't sure it was food-borne. The last thing I needed was to catch a vile virus. But I was fine and able to take care of him.

Finally, I drove my car up to the country today. I haven't driven long distance since last March.