Tuesday, April 21, 2009

Some history

On Friday May 2nd, 2003, I was diagnosed with intraductal and infiltrating duct carcinoma, a type of breast cancer. Two weeks later I walked in to Cedars Sinai to have the tumor removed. It was terrifying. More terrifying than being South of Market during the 1989 San Francisco earthquake. I’ve lived an adventurous life, daring far from the safe and narrow, but one unexplored area remained, the surgery, medical procedure, hospital experience. Couple the unknown with the loss of my younger sister Beverly and dearly loved Godmother , Aunt Isabel a few years prior, both from breast cancer. My unease with the available treatments magnified by having seen my sister and aunt fighting valiantly till their deaths, suffering slowly, watching helplessly as they faded from once vital women to small gray, skeletal bedridden creatures.

And now it was my turn. On June 2nd, I checked in to the Cedars Sinai breast center in Los Angeles, I had family members with me but they were told they’d have to wait while I was prepped for surgery. I put on the hospital gown, having left my jewelry behind as instructed, got onto the rolling bed in a large, very cold room with several other beds, separated by a curtain. I knew there were other people in the room, patients and attendants, yet I felt profoundly alone. I was crying, I prayed, surprised I still remembered the Hail Marys from my childhood. Lying there, freezing in my thin cotton hospital gown, with a sheet to cover me, needles in my arm, I stared at the ceiling, asking myself why I needed to go through this. It’s not as if I need to come out stronger. I’m already strong. Did I somehow need to test my strength? May be it was nothing spiritual at all, but simply my genetic code, my body a biological organism simply running it’s program.

The anesthesiologist came to turn on the drugs that would suppress my consciousness, and I could feel myself slipping into a blank, flat, cold sleep.

I only vaguely remember coming to, everything was fuzzy and I no longer felt the cold. I felt heavy and slow, as if I were under a thick gel. I knew I’d made it through the operation. My sister Barb was there, I was so glad to see her. My feeling of vulnerability at that moment was prevalent and having her there was comforting. Barb gave me a feeling of security when I needed it like never before. Small actions can make a huge difference. I felt weak, it was hard to move, I wasn’t aware yet of pain. My sister helped me get into my own pajamas and I was wheeled out to the car in a wheelchair. Even in my drugged state I noticed a dramatic change in the woman who’d walked into these same doors 2 hours earlier.

I remember being in the car, being driven home, I remember them talking to me, but it seemed like I was in a tunnel, I couldn’t see properly, and the conversation had an echoey faraway quality. Finally I was relieved to be home in my own bed, and I thought I was holding my own in the conversation, but was told my speech was slow and slurred. I have no idea how long I was home before I became aware of the pain, but it made itself known. It was intense, internal, hot. I didn’t like the Vicodin haze, but it did take away the pain, so I continued to take the pills. The next week is really hazy, coming off the anesthesia and taking Vicodin every 4 hours. I slept a lot. I felt restless, but unable to focus from the drugs, so I’d let it wear off to see if the pain was bearable so I could read or write or something, anything, but the pain was still there and still too intense, and then I’d have to wait for the drugs to take effect. I tried that several times before I finally hit a time when it was not so bad.

I couldn’t wait to get back to my life that was going so well, that I loved so much.

The bills began to arrive, from 10 different entities, my surgeon, her assistant (whom I’d never even met, and who I learned was not a preferred provider for my health plan), the anesthesiologist, the hospital, radiology, the lab, you name it, they’re billing me. I learned more than I ever wanted to know about the adversarial relationship between hospitals, doctors and the insurance company, I learned that there are many necessary procedures that the insurance company won’t pay for, leaving the patient holding the bag after the fact, I learned that my deductible which on paper is $2,500.00 per year, is actually a $5,000.00 per year maximum out of pocket expense. My 2 hour procedure cost $35,000.00.

I was glad I had kept my insurance, which I'd had for over 10 years. I'd never had occasion to use it and had been thinking it was a huge waste of money, only a month before, I'd considered dropping it. I put one of my two cars up for sale, cashed in my U.S. Treasury bonds, left to me by my aunt, and began to dip into the savings account I’d started with my new husband towards a down payment on our first house.

On November 19, 2003, a breast MRI caught a some suspicious looking areas in my left breast and one just beneath the surface of my right nipple. The cancer profile was filled in by a PET scan, mammogram and ultrasound. I met with Dr. Kristi Funk (my surgeon), and consulted 2 other doctors to decide what would be the the best course of action to take. We decided the radical bilateral mastectomy would be the best plan to avoid future recurrence. Dr. Funk described the skin-sparing mastectomy, where she would cut a circle around my aureola to remove my nipples, and then make a line straight down from the center of the nipple, opening up the skin to remove all the breast tissue, ducts and every thing. Since I had opted out of radiation treatment, and would have a procedure known as a skin-sparing mastectomy, I would be able to have a reconstruction right away - performed immediately by Dr. Joel Aronowitz. I am grateful for that technology, because I think if I woke up and had only scars and pain where my breasts used to be I might not want to live. It’s not that I am defined by my breasts, or that I am my breasts, but that I was already feeling pretty depressed. I’ve prided myself on having a sparkling credit rating, on being a responsible person who pays her own way in the world. The tests I needed added more to my already daunting pile of debt, and now I would be adding to that another surgery. As a self employed individual, I pay my own health insurance premiums 100%, I have no paid sick leave or even vacation days. I felt as though I were running trying to catch up to where I’d left off in May, and falling farther and further behind. Then my insurance company sent me a letter to say not only would my premiums go up each month, but my maximum out of pocket deductible would be going from $5,000.00 to $7,500.00 in 2004. I felt my dreams of ever owning a home were gone, and I felt paralyzed by the fear of bankruptcy, and the confrontation with my own mortality.

I thought about spending the rest of my savings, maxing out my credit cards and doing all the things I have wanted to but didn’t have the opportunity yet, and then letting the cancer run it’s course and take my life.

I decided to fight this battle. I have so much life yet to live. My life is filled with love, treasured friends, some spanning more than 20 years, the cancer in my family has helped us mend bridges I thought were burned forever. Most days I’m not ready to wave goodbye.

Friends have stepped up to help in the fund raising effort, relatives have found strength we didn’t know was there, I’ve learned that I’m surrounded by women who’ve survived beast cancer and are in a position to and want to help me survive. I can feel the walls of cynicism falling away and I have hope for humanity. The caring, helping hand that you have outstretched to me has allowed me to shift my focus from my internal struggle, to focus outside myself, to the future.

The struggle is never over. Once cancer has entered your life it is always lurking. I have been inspired to reach out to other women and help them survive, navigate the confusing medical world and to raise money to help with the costs of simply moving on with life after cancer.

Let me remind you once again to do those things you’ve always wanted to do, to treasure your life, friends and family. Make sure they know you love them.

Call someone right now and tell them.

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