17. Adrift

Dr. F said he would send the referral request to UCSF for me to see see Dr. E (the breast surgeon Dr. R had recommended) and a plastic surgeon. They would call me to set up an appointment but he also suggested I call them to help expedite the process. I was happy to do whatever I could to help move things along. 

I waited a couple days before I called Dr. E's office. I naively assumed that would have given them time to have received the paperwork from my doctor's office. When I got through to someone in Dr. E's office, they had no idea who I was or why I was calling to schedule an appointment. I gave them the background and was told simply that an appointment couldn't be set until they had received and processed all the necessary paperwork. I spent the next two weeks battling continually with the Medical Assistant in Dr. E's office. Each day I called only to be told "we don't have the paperwork yet" or "the referral didn't get faxed to the right office and needs to be sent again" or "your insurance hasn't authorized the visit yet" ... these were the responses I received each time I called them. They didn't call me. It took two weeks for all the pieces to come together before I was able to finally set an appointment to see the esteemed Dr. E.

"The first available appointment we have is for September 30," I was told. That would be six weeks out - for the consultation visit! 

"I'm sorry, that's six weeks away. I'm not trying to schedule surgery, just the consultation with her," I pleaded. I was told to, essentially, take it or leave it. Fine, September 30 was put on my calendar. At least I had an appointment. But six weeks away? What about the cancer still in my chest wall? Will it grow and/or spread before then? Is that too long to wait? How long will it take after that to actually get into surgery? The questions were mounting.

I opened the letter addressed to me from my insurance carrier expecting to see the standardized form saying your referral to see Dr. Whomever for Plastic Surgery Consult is approved. Nope. The request had been denied. I was confused. They approved my consultation with the breast surgeon and denied the plastic surgeon consult. Damn maze again.

The next section here is pulled directly from a letter I wrote not too long afterwards ...

"On September 10, 2009, Dr. F called me directly to say, "if I was his wife, he'd have me in surgery the next week and I could have Dr. L perform the mastectomy right away and we would worry about the reconstruction later". I called his MA to ask what this means and what I should be doing. She informed me that he was supposed to have called me to tell me the insurance company denied the plastic surgeon consult. He told me nothing of that. Meanwhile, I kept inquiring with his MA as to what our next steps were and if there was a plan. She said she thought that Dr. L might be talking to Dr. F about getting a plastic surgeon from another hospital to get special privileges to work with him at the county hospital to perform the immediate reconstruction. However, neither Dr. L nor Dr. F ever discussed this with me and I have yet to receive any additional information on the subject. Additionally, the insurance "case manager" said she wasn't sure why the plastic surgeon consult request had been denied. It shouldn't have been ... perhaps, she said, they mistook the request to be a second opinion consult. She wasn't sure."

Recap - It was the middle of September, three months after the original bilateral lumpectomy surgery. I still had cancer in my chest wall and I was no closer to getting it out than I had been three months earlier. I was lost, adrift, in the middle of the medical maze. There was no captain of my ship, no master directing me to my next port. Nobody in the medical field seemed to care what happened to me ... I was passed from doctor to doctor to doctor, like they were playing hot-potato with my life! The insurance company didn't talk with the oncologist, the oncologist didn't talk to the referral doctor, the general surgeon didn't talk to the oncologist, and nobody talked to the patient - ME!

Somewhere in this time frame of history, I added a category to the short list of reasons why Cherí would cry - utter frustration and anger with the medical and insurance companies! 

I had no choice but to take the wheel and steer the ship through the maze myself. I turned to social media, namely Facebook. Fortunately, I was blessed to have an incredibly amazing circle of family and friends. A dear friend of mine, Ann-Christel, reached out to me to offer assistance. (Ann-Christel and I met back in junior high, twenty-some years earlier. We had lost touch over the years, but I had always hoped to regain communication with her someday. She was one of those people you admired as a teenager and whom you knew would be successful, kind and always a faithful friend. Thanks to FB, we had reconnected just a short while before my medical nightmare had begun.)

Her emailed message to me was short, sweet, and simple. She had married into a family that had good medical-field connections in the Bay Area and she would be more than happy to help me in any way possible. My stubborn independence had to be set aside as I knew I needed help in this battle.  And, there in her short message, was my glimmer of light and hope. 

The day after I accepted her offer of help, I received a phone call from her mother-in-law, Anne. Her voice was kind, that of a loving and devoted mother and grandmother; yet, she spoke confidently and with purpose. She asked if I could be available to meet with a doctor they knew (and highly recommended) on Friday - less than 48 hours later. I didn't consult my calendar - I just said yes!