Wednesday, April 29, 2009

It's cancer

I want to chill out and look at all my options for KILLING the cancer. WTF? I did a pretty radical treatment already, which was supposed to leave me with only 8% - 10% chance of recurrence.
I'm pretty pissed off about the recurrence and somewhat resigned to think cancer is the way I am supposed to die. Maybe I should not mess with Mother Nature.

Tuesday, April 28, 2009

I'll know if it's cancer tomorrow

Dr. Funk did a needle biopsy today, She took two core samples (the size of a grain of rice each) of the mass and we looked at it on the ultrasound. I have to go back at 4.45 tomorrow to see what the lab said.
I was more nervous about the needle biopsy procedure than getting the results. It's the whole getting poked with needles thing. I am so squeamish.
I can get tattooed for hours, but poke me with a big fat needle and I get all queasy.
I couldn't eat today because of my nerves, so tonight I was starving, so Damon took me out for a porno burrito. I was able to eat 1/3 of it and I am as stuffed as a tortilla at El Atacor #11. Ghetto comfort food.

Once you've had cancer, it's always looming

The first entry in this blog goes into some detail about my experiences and emotions around the time of my first breast cancer diagnosis and the surgeries that followed. Those things are much easier for me to write about than the financial hit that takes even longer to recover from. For me personally, there are a lot of intense feelings surrounding my ability to take care of my responsibilities.
Coming off the pain medication after those surgeries felt like swimming up from deep murky water, the light got brighter and reality became sharper. When I saw the medical bills piling up, I really wanted to dive back down into those comfortable Percocet depths.

I have a great deal of fear and shame around not being able to pay my own way in the world. I’ve always had immense pride about my credit rating, always paid bills as soon as they landed in my mailbox. I never wanted to depend on anyone else to help me make ends meet, more the opposite, I was proud to be able to give a hand up to someone else who might need it.
Of all the things I had to confront in facing my cancer (my mortality, the disfiguring surgery) the hardest by far was facing the fact that I would have to reach out for help financially. I had to admit to myself and then to the world that I was not capable of taking care of my own medical responsibilities. This is still very challenging for me to admit, it has taken me about an hour, four espressos, and a couple of procrastination breaks to write this down.

At the time of my diagnosis, my husband and I were planning our wedding and had been saving toward a down payment on a house. Saving money is something I like to do and something I have always been good at. Saving toward what is likely the single biggest purchase of one’s life takes time, but I am patient.

I had to put my plans on hold and turn my attention to driving to Cedars Sinai for doctor visits, around town for consultations, phone calls to my insurance company to verify coverage and I also wrote a living will. I did what needed to be done to remove the cancer, and I felt proactive, involved and positive for the most part.
I am a control oriented person and I felt within my comfort zone after lots of research, I felt I knew more than I ever wanted to about breast cancer and the treatment options. I found excellent doctors, and I was feeling optimistic about the potential outcome.
Until the medical bills were more than I could pay with what my husband and I had in our checking accounts, more than what we had left over after household bills, until we had to look at each other and decide to use our savings, until even that was not enough. I hadn’t thought death would be an easier choice until I saw how incredibly quickly all of our money was spent. Death looked like a real option when I had to pay for groceries on a credit card because there was no money left in our checking account. I felt like a burden on my husband and friends and I felt ashamed and like I was somehow not good enough because I didn’t have the money to pay for my medical treatment. I felt like I was foolish for choosing medical care beyond my means, as if truly excellent care is a privilege that I did not deserve.

Six years later, I am glad to have made the choices in care that I did, happy to be well and so immeasurably grateful to have had the support network that I do. Still, six years later, my husband and I have not recovered from the financial hit. Our savings remains depleted and I have come to terms with the fact that we may never own a house.
Time has passed, my life has gone on and while I am happier than ever, a dark cloud looms in the distance of my consciousness. Until I had a cancer diagnosis, my yearly check ups were a routine. Now, I wait with a knot in my gut for a call a week after the checkup. The call where the nurse tells me that I have to come in to discuss the test results. They will never tell you over the phone that some thing looks suspicious, but they might as well. Being told that you have to come in to talk about the results is never a good sign.

Last night I attended a dinner at my husband’s restaurant, five courses paired with five outstanding wines from the Barnett Vineyards in Napa. I slept only about four hours because this afternoon I will go to Dr. Kristi Funk’s new Pink Lotus Breast Center for a needle biopsy on a new lump in my reconstructed left breast. The familiar nervous feeling in my stomach will likely be with me until next week when all the test results are in.

Life looks more beautiful, wine tastes more delicious, and love feels more precious from my perspective. I am well aware of the tenuous nature of life. I am one positive biopsy, one strange new lump, one mutated cell away from plunging back in to the deep murky waters of surgeries, pain meds and medical bills. Cancer often comes back.

Thursday, April 23, 2009

The Go-Go's covered this great Rolling Stones song .

I have the honor to count among my very best friends Jane Wiedlin, one of The Go-Go's. When I was recovering form the double mastectomies, Jane was living in Costa Rica, but she came to stay with me and be my nurse, Jane occupies a really special place in my heart.
Last night I drove Miss Jane down to The Grove in Anahiem and hung out to watch the show. I have been in a reflective mood lately, for many reasons. Standing backstage watching the performance, I looked at the crowd of people dancing and singing along, clearly enjoying all that the Go-Go's bring to a live performance, and it struck me that we had somehow transformed from baby fat and punk rock to middle age!
I realize everyone struggles at times with the idea of growing old, and I had to bust out laughing when the Go-Go's closed the show with their cover of The Rolling Stones' "Mother's Little Helper".
Later in the dressing room I asked who's brilliant idea it was to close with that song, but I didn't get an answer.
The opening line "What a drag it is getting old..." was one example of the Go-Go's still speaking with humor for their generation and in that moment all of us in that room were united.
Part of why I am writing this blog is so that someone else may see that she is not alone in her yo-yoing emotions during and after cancer.
All living things age and die, so in this particular moment of ennui, I remind myself to celebrate the life I have.

Tuesday, April 21, 2009

Another Doctor I became interested in

After the lumpectomy in 2002, I began to read about alternative treatments in addition to the generally accepted medical course. Specifically, I became interested in the role of vitamins and nutrition in healing my body.
I read "There Are No Incurable Diseases" by Dr. Richard Schulze, I decided I would try some of Dr. Schulze's detox programs, since they focus on getting more high quality vitamins into your system. I want to stress I did this in addition to the standard medical treatment and surgery I was getting from Dr. Funk and Dr. Aronowitz.
The program was not difficult. The most labor intensive aspect is the amount of fresh vegetables and fruits to be juiced every day. Bottled juices are not acceptable and juicing right before you drink is preferable.
I love the taste of fresh juices, so the only problem I really encountered had to do with breaking my sugar and fat cravings, but after about three days, I noticed a pretty dramatic increase in my energy and mood. After only two weeks, other people were commenting to me about the glow in my skin. I was feeling really good, which was important considering the fear I was facing on a daily basis.
I continued to get a lot of fresh juices into my diet even after I had completed the detox cleanse and I honestly feel I healed faster after the much more invasive and dramatic mastectomies than I did after the lumpectomy.
Six years later, I still use my juicer regularly and make sure I do a detox cleanse once a year.
I use a Waring extraction juicer I bought for around $60.00 at Costco. I really like it. It easily juiced just about everything, with the exception of wheatgrass. I also got a Citrus attachment for my Kitchen Aid mixer since I really, really love citrus juice. I'm not pitching these products, just telling you what I used and what works well for me.

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.