Hi, members have been asking me how I'm doing with the radiation therapy for my nose and lip. I'm doing fine. But there are small problems. I think that the actual radiation lasts for about 10 seconds, but a person spends about 10 minutes in the thing-it's like a cat scan thing-roll in-roll out. I'm having trouble with 2 things, my hair and my sinuses. They aren't used to people having hair, so my long hair gets in the way- It's baby fine hair and to the middle of my back. I can't have a scrunchy or any pins, and it flies all over. It dawned on me when they said my hair is in the way-good hint--So I wet my hair before I go, comb it to one side, and braid it. When I go in I pull the braid out and put the scrunchy on the end. It keeps my hair together. The male techs say that I look like the female movie cowgirls of the 70s, see Billy Jack, and Butch Cassidy and the Sundance Kid.
Now I have a real continuing problem. I've complained that my little nose (part of the nostril was surgically removed) doesn't drain properly, I'm having trouble with it draining into my ear, I can't blow it's too small to pick, and it gets hard plugs of snot build up and I can't even breathe through it. Wed. Jan. 2, 2013, the plug fell out into my throat, and the sinus on that side drained into my throat. I was in the zapper, the roaster. Because it was so unexpected, I panicked. The mask was too tight to breathe through my mouth. Then I remembered that it's a very short time, and I knew how to hold my breath. So, I pretended that I was swimming under water, and I relaxed. It dawned on me that they never told me what the danger signal is. I was about ready to lift a leg and wave my foot when they came in. I was gasping for air, and when I sat up, the crud slid into my stomach.
Anyway, I saw the nurse and she recommended that I double my dose of anti-histamine. That didn't help very much, so now I'm taking 30 mg of antihistamine a day. I'm running out. I can't take OTC decongestant because I'm so allergic to sudafed, Tylenol, pseudoephedrine, aspirin, Motrin, cough syrup, etc. Anyway, I need a new prescription for 3 day-and that's what the pharmacy board didn't want me to take. Dr. Garg said that he'd write me a prescription. I'll take it some store that I don't do business with-so they don't know anything about Presbyterian, so the pharmacy board doesn't see it and play games. I'm self-pay on that too.
Here I pay for medicare part D, the government subsidizes my payment because I'm so low income, and they pay Presbyterians share, and the only med that Pres pays for is Zantac? I self-pay for everything else, my thyroid, my stomach medicine, my sinus meds.
Yesterday I finally smelled something, while having the treatment. They asked me what it smelled like. I finally said lightening-ozone-thinking about it more, it smells like lightening and uranium. Maybe sort of like a uranium mill's acid pit. I don't know- it certainly didn't smell like a Cattleman's cut of T-Bone or a chocolate cake.
Dry mouth hit me yesterday. I brushed my teeth in the morning, then at noon-my saliva was thick.
I can't wear pull-overs like T-Shirts, because I bumped my nose and it hurt. I'm maintaining my weight to the ounce. The doctor and nurse are very happy. I lost weight-4 lbs-but I'm staying exactly on that weight.
Oh, there's slight hum, and with my eyes closed and covered with eye guards, there's a bunch of flashing white light.
What my big problem is the ONCOLOGIST--I want a different doctor. I've made 2 requests to my nurse navigator, and I want the transcript of the tumor board. If I don't hear from the Nurse navigator, my next step is visiting the chaplain or going to a lawyer and complain to the NIC, which governs tumor boards and accredidates Cancer Clinics, the national board of hospital accreditation, the the state boards. I feel this doctor is a threat to my health in many ways. I do not understand why i have to take an adult male with me to get an answer about anything. My personal physician ran the tests that should have been run in Onocology. I told him that Dr. Garg ran a BUN and a creatine, and he thought that the lead Oncologist had run other tests-so I got hold of my PCP, who ran the tests for anemia, etc. It might be good to know if a patient is anemic, etc, before suggesting any radical cancer treatment. The only thing the jerk asked me about is if I had hepatitis-and how my liver is. So please pray for me that I can get a new doctor-Because whomever I have, will be taking care of me for future problems-even palliative care--- whomever doesn't have to like me, but must tell me all of my options and answer my questions.