At 4:30 pm thursday I am still in my bathrobe, trying to be strong, yet really sad.
I cant write too much right now, because I dont have a grip on what to say. I am a blubering emotional mess.( Don't worry-I'LL be back!)
Yesterday, wednesday was a loooong day.
Tuesday Barry and I drove down south to go to the appointment on weds at the Sarcoma Institue. It was a beautiful drive on hwy 1 and a comfortable hotel.
Briefly, the news is that the doctor (we so trusted) was giving me one half the dose that my body weight should have had (based on the institute). They didnt understand why he did this, yet didnt want to make another doctor wrong. They also said it is out of the question for me to have started chemo with out a ct scan. HOW will anyone know if the chemo is working without the ct base line.
The only way to treat me would be for Kaiser to supply the chemo med and me to travel a few times a month to Santa Monica. The clinical trials are funded by pharmacy companies, however most people have insurance to bill (such as Blue Cross).
The also faxed a reccomendation to the Kaiser oncologist in Walnut Creek .
I am/was so ready to run to this Kaiser Oncologist and have him do the chemo, just the way the sarcoma institute says.
Then I thought...how do i know...how do I trust...I need to regroup.
Today I put calls out to Stanford and UCSF to fine out what they know abou sarcoma.
I called the kaiser pharmacist, Henery, to tell him that I would not need the chemo med. He told me that if I find a clinical trial that kaiser does not offer-KAISER will have to pay for it. No one at kaiser has told me this before. I also found out there is a woman who will research "the case" and tell me what is available. At this point it sounds resonable. Thats all I can say for now.
Knowing ME, I know I take a day down and then I come back. See me Friday
I cant write too much right now, because I dont have a grip on what to say. I am a blubering emotional mess.( Don't worry-I'LL be back!)
Yesterday, wednesday was a loooong day.
Tuesday Barry and I drove down south to go to the appointment on weds at the Sarcoma Institue. It was a beautiful drive on hwy 1 and a comfortable hotel.
Briefly, the news is that the doctor (we so trusted) was giving me one half the dose that my body weight should have had (based on the institute). They didnt understand why he did this, yet didnt want to make another doctor wrong. They also said it is out of the question for me to have started chemo with out a ct scan. HOW will anyone know if the chemo is working without the ct base line.
The only way to treat me would be for Kaiser to supply the chemo med and me to travel a few times a month to Santa Monica. The clinical trials are funded by pharmacy companies, however most people have insurance to bill (such as Blue Cross).
The also faxed a reccomendation to the Kaiser oncologist in Walnut Creek .
I am/was so ready to run to this Kaiser Oncologist and have him do the chemo, just the way the sarcoma institute says.
Then I thought...how do i know...how do I trust...I need to regroup.
Today I put calls out to Stanford and UCSF to fine out what they know abou sarcoma.
I called the kaiser pharmacist, Henery, to tell him that I would not need the chemo med. He told me that if I find a clinical trial that kaiser does not offer-KAISER will have to pay for it. No one at kaiser has told me this before. I also found out there is a woman who will research "the case" and tell me what is available. At this point it sounds resonable. Thats all I can say for now.
Knowing ME, I know I take a day down and then I come back. See me Friday
posted by Suzanne at
4:31 PM
2 Comments:
Test
By
Suzanne, at 4:26 PM
I know this is an old post, but maybe this will get emailed to you. I came across your blog. I had Kaiser 5 years and had an ovarian cyst...they NEVER ONCE did an ultrasound. Since I am a teacher, we have choice of hmo (kaiser) or ppo (blue cross). The copay is $10 more but I am able to choose any doctor. Also prescriptions are the same. But it depends on your job/coverage. And let me tell you, it has made all the difference. I am now at Cedars Sinai and have a great doctor. If you ahve this chpoice, I'd take it.
I thought Kaiser was great because you just go to one place, but they are in essence a conflict of interest... becasue they are paying (insuring) for the care they provide you. Like car insurance. So naturally they will scrimp if they can.
By
Stacy, at 8:17 PM
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