It's been about a week since I last posted and I updated the signature line to reflect Carol's diagnosis. The week had been somewhat productive and then ended being very confusing and upsetting.

She saw the Dental Oncologist on Tuesday 1/12 and Thursday 1/14 she went through Pre Admission Screening for Dental Extraction. Next Wednesday (1/20) she is scheduled for Dental Extraction. Okay, great, we thought, progress is being made, about 10 days after the extraction, if not sooner depending on how Carol heals, the radiation treatment begins......In the meantime, an appointment with Carol's Primary Care Doctor had to be made so she could get a referral for the PEG. Okay fine, no worries. This was last Friday 1/8. (As I had mentioned in a previous post Carol was awarded a full city contract. She was assigned to "Internal Medicine Primary Care & Specialty Center" as her Primary Care Provider.) I called them and was told I had to call Outpatient Financial Services for a primary care doctor. I told them "You" are the primary care provider Carol was assigned to. I called Financial Services was told what I already knew and called AGAIN to Internal Medicine Primary Care and talked to another person. After receiving the apologies for the "newbie" Carol was scheduled to see the PCD on Friday 1/15. Well, she went to the Dr and come to find out the Dr is assigned to the "Community Health Center" and not "Internal Medicine". Carol decided to keep the appointment just to get her referral for the PEG, which meant she had to be reassigned to "Community Health Center" as her primary care. That was too easy to do, just make a phone call to Financial Services and viola she now has a DIFFERENT primary care provider - too easy.

Well the good news is Carol will have an appointment for the PEG before the end of next week, 1/22. The bad news is the Dr wants to see Carol next month. This Dr is just a family doctor, is not specialized in oncology or head and neck cancer, or oral cancer, or tonsillar cancer. Next month Carol will be going through radiation and chemo, will not be up to seeing a "family dr".

I'm getting really ticked off with the treatment of Carol that started to be fantastic and has quickly gone into the toilet. It seems like she's going backwards not forward. Damn it, Carol needs specialized care!!!

The Dr was not friendly, did not provide any kind of info or question why the hell Carol was there to see her instead of the people in Internal Medicine. (Just one more tick on her belt?) The staff is very desensitized, but boy did they jump when I told the nurse Carol has stage iv tonsillar cancer, spread to tongue and lymph nodes, just needs a referral for PEG, etc. etc. etc. They behaved as if a cancer patient was an alien!

Carol's pain is getting worse. She had been getting
473 L of generic lortab, taking 15 ML every 6 hours as needed for pain. 0 refills. She has NOT abused the drug and her pain is becoming more unbearable. The "family doctor" scripted lortab 120 L, 1 ML every 4 to 6 hours as needed for pain. w/1 refill. Hell of a difference in dosage. We had gone to the RO but he wouldn't prescribe, he said go to the primary care doctor to see if she could get anything stronger. Now Carol's right side of mouth is getting sore.

I needed to sound off to somebody, I'm feeling depressed...kinda lost. You can't imagine how Carol feels. Any suggestions, advice, anything would be greatly appreciated. Do I need to push harder? Be firmer?

The initial numbness of learning Carol has cancer and all the information that was thrown at her all at one time has worn off, reality has set in on the both of us. Now it's a matter of "when"...This beast is being very aggressive, beginning to beat Carol down, and she's strong willed as all get out.

Thanks for listening.

Linda