by Linda Zercoe
We all went to Tony n’ Tina’s Wedding before they left, to celebrate Kim’s birthday. It was interesting, a little raunchy. But Kim and her latest boyfriend, Zach, seemed to enjoy it. I can’t seem to get anything done. Doug says I need to focus and have an attitude adjustment. Leave it to him.
March 23
I went to the doctor today. I wrote a quick list of how I feel, and they actually wanted to keep the list. The doctor put me on Premarin in addition to the Estratest. I’ve now gone from .625 mg to 2.5 mg of estrogen. As Clara says, “trial by error,” when hearing my daily tales of woe in dealing with the doctors.
I feel like the guy is torturing me. He is concerned about HRT (hormone replacement therapy) with my breast cancer history. What difference does the long-term risk make if I don’t want to live through today? Is this just grief? I feel like I have nowhere to turn to stop the pain. Clara has been helping me a lot.
March 27
I’m feeling a little better but not great. Very tired. Brad had something in his eye and we wound up having to go to the ER at 1 a.m. for these huge pimple-like things on the inside of his eyelids—conjunctivitis. Friday I spent the day with Brad and was fine, except for having to fight him to give him the eye drops.
March 29
I had a much better day Saturday and Sunday. I upped the Premarin, now at .625 mg Estratest and .625 mg Premarin in a.m. and 1.25 Estratest and .625 Premarin in the p.m. I slept great on Saturday night but only 3½ hours on Sunday. Today, even though I have less patience and have still a bit of depression, I almost feel normal. It is still hard not to do too much.
Friday night I made a list of what was bothering me—always there, but just magnified, especially in the evening when tired:
Beat husband up for failing to meet my needs
Feel low self-worth
Feel depressed, hopeless, unloved
Focus on failures/mistakes
Feel sorry for myself
Feel easily angry at people
Too reflective
Too analytical
Can’t shut down or relax
Unable to focus and accomplish
I took Kim to see Rent yesterday—very good. Kim has been depressed. She hasn’t received good news from any of the colleges she applied to. I guess she will have to go to the junior college and try again next year.
April 3
As this past week has progressed, I’m having more and more energy. After not sleeping again and again, I upped the estrogen—one Estratest 1.25 plus 1.25 Premarin. I’m not having the mood swings and my depression seems to be lifting a bit. Beginning to be a little energized, but I’m still cranky when I’m tired. I have got to stop doing so much. I am a broken record. I can’t stand the gynecologist—what a jerk.
My counselor has suggested that I go see an acupuncturist/Chinese herb medicine person for my sleeping problems and anxiety. Supposedly Chinese or Eastern medicine works with the body’s energy meridians. The energy is called chi. Acupuncture and the herbs help to remove the blockages that cause disease, open up the pathways to healing and restoring balance. Wouldn’t that be something? This medicine practice is thousands of years old. You are diagnosed by your history, how your tongue looks and your pulses. Your body systems are different from those in Western medicine. You have a spleen, liver, and kidney system. You are damp, wet, or dry. You are wood, water, wind, metal, or dirt. I should give it a try. What do I have to lose?
Also my therapist assigned homework. I now need to take myself to the movies at least once a week to relax. The family falls apart when I’m not well. I guess I have to stop thinking about myself. So where do the movies fit in?
Chapter 19
The Infinite Loop
April–September 1999
April 12, 1999
Thursday, Kim went to the emergency room. I wasn’t around when it happened as I was out to dinner with a friend. A dog she was caring for latched onto and tore open her chin. The ER doctor was an asshole. He didn’t call in a plastic surgeon and closed up her wound with black exterior stitches. He put her on an antibiotic that is not effective for dog germs. He treated her like an animal. He didn’t bother to give her something to calm her nerves. He yelled at her, referring to her chin as “hamburger meat.”
Her boyfriend, Zach, was much the hero. His mother, who owns the pet-sitting business, felt so bad. It was an accident.
Friday was supposed to be my pamper day. Instead I called my plastic surgeon to see if Kim could be seen. His nurse said that he will not look at her chin until it is healed (in approximately six months) and gave us some tips the ER doctor failed to do. I missed my waxing appointment and rescheduled. Then Kim and I went to see her doctor. He changed her antibiotic and chastised the ER doctor and said, “Do not go to that hospital ever again.”
April 22
We went camping. In the morning I bought myself a pack of cigarettes and had one. Why? To feel better or fulfill a death wish, who knows? When we got home, I went to see a Chinese medicine doctor/herbalist/acupuncturist. The consultation was disturbing. He hit many nails on the head. I felt like he knew me. He commented on how he didn’t know how I was alive—because most people he claimed would have given up. He said I have a strong will to live, like a tiger. But this will is also preventing me from healing. He thinks that I have a “wood personality” and am blocking my liver somehow.
He also told me that part of my spirit has left me and I need to get it back. He knew a shaman. It was overwhelming. He gave me some herbs. God knows what’s in them. We’ll start acupuncture next week. He didn’t seem to think insomnia was my biggest problem. He told me that the liver blockage was forcing energy into tumor formation and growth.
I went to book club. A club member wanted to hold my hand and asked me, “Can you stop getting sick now?”
April 26
Friday was the day of Kim’s boyfriend’s junior prom. I gave her a pedicure and manicure. We did her hair and makeup. It was nice. Mary came over, and on two glasses of wine, I was ripped. I’m reading a wonderfully helpful book entitled Close to the Bone: Life-Threatening Illness and the Search for Meaning by Dr. Jean Shinoda Bolen. This book is so true. I can’t believe it. I really want Doug to read it. He won’t, and even if he did, he’d say, “So, what’s the big deal.”
Yesterday I bought some suits to interview in, but now I’m thinking that I should wait until September to start working. Last Thursday the University of California called regarding the chief treasury officer position I applied for months ago, wanting to know where I’ve been for the last three years. I told them home and I haven’t heard from them since. Oh well. By the way, I got conjunctivitis over the weekend starting at Saturday night’s Warriors game with the Boy Scouts. Now Doug is hinting around that he wants a boat motor for his birthday.
May 22
Kim had her senior ball yesterday. This week has been nonstop harassment about the after-prom activities. Her first proposal was renting a van to go to Santa Cruz, then her second idea, a sleepover with Zach and other friends, culminating with staying out all night. I’m worried that Zach’s stepmother doesn’t really know what’s going on.
I’ve been having repetitive dreams about leeches sucking on me. Whatever the situation, I find out later I have some obscure itch and check the cause, a leech, and then many leeches. I start screaming to deal with the horror as I painfully try to rip them off my body. Talk about symbolic.
I’m in the air, off to Washington, D.C., for the Breast Cancer Advocacy Conference. Outta here, alleluia. I’m so glad to be getting out of there.
May 23
Robert picked me up with his friend Katherine. It has been so good to see him. Sunday, Katherine picked us up and we went to some dive for breakfast and then to an open-air flea market with lots of junk.
Back at the hotel that afternoon I went to my first session of the conference. It was fantastic. So many people were there and all so energized. I met a film producer from California.
She’s a busy activist.
This evening, Robert, Katherine and I went to a restaurant on the waterfront of the Potomac River. It was such a beautiful and balmy night. It feels good to be away and feel alive.
May 24
Full day at the conference—session one on Tamoxifen, luncheon with Susan Love, MD, as speaker, then session two on “Is Project Lead for you?”, then a session on ”The Environment and Breast Cancer.”
It seems to me that the more they know, the less they know. They discover new information and data points, but they can’t prove conclusive correlation. For example, cigarettes cause cancer, but why do non-smokers get it too? The mystery increases with each new theory or research finding. When I get home, I need to get copies of my X-rays, information from the oncologist on tumor assays and progress notes, and be certain they save my tumors.
I am pretty excited about getting involved. This evening there was a cocktail reception with dancing to a live band.
May 25
Today was “Lobby Day.” We got up early, got on buses, and headed to the U.S. Capitol. We had a rally in the morning. No one was there other than the conference attendees. We didn’t fill the mall. We didn’t even cover the landing platform before the steps. I don’t understand—where was everyone? You would think breast cancer wasn’t even an issue!
For the rest of the day we toured the congressional office buildings, visiting representatives, their aides and assistants. At 4 p.m. some of us, residents of California, met with the top aides in Senator Diane Feinstein’s office.
The senior aide welcomed us and said, “Let’s go around the room, and it would be great if each of you could tell us if there anything in particular that we can help with in our role in Congress.”
When it was my turn I said, “I think there is a problem with getting second opinions outside of the network if you are in an HMO. Insurance doesn’t want to pay for it, and even in network it is difficult.”
At the end of the meeting, the top aide asked if he could contact me in the future for more information.
“Senator Feinstein is aware of this issue. Your story may help in the case she is making to get insurance reform, especially with the HMOs.”
I gave him my number.
I had good and bad observations about the experience of Lobby Day. The good ones were that in some cases it appeared that our visit may have made a difference. In others we had to meet with very young people (interns, aides). It appears to me that these young people analyze the information, summarize the information as they see fit, and then make recommendations to the senator or representative. Pretty scary. One of the legislators that we were scheduled to meet with was wrapped up in the China weapons theft issue and another one was dealing with agricultural appropriations. There was a reception, where we met Nancy Pelosi. She gave a short speech, and afterwards there was lots of handshaking.
May 26
I slept well last night, but unfortunately I had to get up at 5:30 a.m. for a 7:15 bus to the National Cancer Institute. I attended a lecture session from 9 a.m. to 12 p.m. given by the head of the National Cancer Institute, an overview of what they are doing in cancer research, some of which was very interesting.
I especially enjoyed the session of one molecular scientist researching mutations, metastasis, and the relationships of tumor suppression genes and oncogenes expressed in malignancy. She explained how a breast cell changes to cancer and how the cancer spreads. It appears from her studies that the breast cancer cell first “tricks” the body while in disguise as it migrates to the pathway of blood or lymph vessels. Then the “cloaked” cancer cell escapes detection by the many immunological factors in the pathway environment. It survives until it plants itself in a foreign organ. Finally, it mimics the host organ cells to protect itself until it takes root and triggers angiogenesis to feed itself. It sounds like an alien invasion. This was very disturbing.
It appears as though the cancer cells are very intelligent.
May 29
I’m on Continental flight 1957 en route to Houston and on my way home. I had a glorious week. I slept great and feel energized. I can breathe again. I am looking forward to getting home. I plan to focus and get some things done. I am looking forward to eating lots of produce. I enjoyed my visit with Robert and the peaceful interaction. It will be interesting to see how long it takes to feel the toxicity again. We’ll make a note.
June 12
I am sitting at a picnic table at a campsite at Hell Hole Reservoir near Lake Tahoe. Doug and Brad are out fishing. I think I am the only woman, possibly the only human, for miles around. Why did I come? I guess I thought that if I stayed home I’d be painting the trim in my bedroom or stripping doors, working. At least here it’s quiet, peaceful, nothing except me and the mosquitoes.
Kim graduates from high school next week. I feel so sad and glad. I’m sad because she’s off, about to embark on her own life. I’ll never see her anymore. She will be doing her thing, working, going to junior college, shows. She’s all grown up. I’m glad because it’s less of a burden on me. Boy did that go quickly. Doug and I have had two fights since I have been home. It is so draining. Although I still feel pretty good since my trip, it is amazing to see how good I feel when I’m out of a draining environment. But what do you do, abandon your family?
It’s so quiet here just birds, fog, and the whir of mosquitoes. I do hear a boat or a plane in the distance.
School is almost over for Brad—the end of third grade already. He was so funny this week. He had to give an oral presentation on a term paper he did on “Aircraft of the World.” The morning of the report he totally freaked out. He was so nervous. He didn’t want to go to school. He couldn’t eat. He was certain he was going to throw up. It was sad, but funny too. Since when did he become so unsure of himself? I went to his class for his presentation. He did just fine. Afterwards, he acted like nothing had ever happened—go figure.
I have heard twice from Diane Feinstein’s office regarding medical second opinions and dealing with insurance companies. This sounds exciting. She wants to use some of my stories to introduce a bill regarding coverage for second opinions.
I am still sleeping pretty well off the Trazadone. I think having my hormones in balance really helps, as well as not having to listen to Doug snore, since he has taken up residence in another room.
Chapter 20
Smoke and Mirrors
October 1999–March 2001
Kim was busy with her first year at the junior college, dating, working, and performing in the theatre. She also applied to a few more colleges so she could transfer for the next academic year. She was rarely home and was not going to account to us for anything involving her life. I stopped waiting up for her or for the phone call in the middle of the night. I was letting go.
Y2K wasn’t the Armageddon predicted. It wasn’t anything that even blipped.
I started smoking again on Valentine’s Day 2000. On the way home from our romantic dinner I wanted a cigarette, so we stopped at the market. When we came home I lit up, sitting out on the back deck. It was relaxing. I noticed starting to smoke was something you have to really work hard at to like. The first taste was horrible, improving with each subsequent cigarette. I don’t know what I was thinking—addictive personality disorder, part of letting go, learning to relax, giving up the fight, all of the above? At first I limited my smoking to two cigarettes a day, then four. I didn’t smoke enough to be chemically addicted but I became addicted to the behavior.
It was interesting to note that to have a cigarette, I had to stop what I was doing, go outside, and commune with nature. I had the time to stop and think, which I believe for me was a drug-induced form of meditation. Certainly there was no social aspect to it, since no one knew I smoked and I knew no one else who did or would admit to it anyway.
In March, Brad and I drove up to Grass Valley to purchase an adorable 6-month-old male papillon puppy from a breeder we’d met at a dog show in San Jose. He was
my new baby. Doug had told me that if I wanted to get a dog, then get a “real” dog. This wasn’t in that category, but too bad. I liked this breed because they were smart, self-grooming, their hair didn’t mat, they were great companion dogs, and they were small.
Brad and I named the dog Indigo since his hair was a bluish black and white. He became my new best friend and was a great companion. I am sure my decision to finally get a dog was in response to no longer being able to have children. The good news was there were no diapers, laundry, temper tantrums, or answering back, just unconditional love and companionship. He really brightened my days and my spirits.
Shortly after he arrived on the scene, Doug grew to really enjoy him. Kim and Brad seemed a little jealous. Indigo never became their dog, probably due to my possessiveness, who knows. As a result of getting a puppy in conjunction with the beginning of spring in California, I began taking longer walks and spending more time in the yard for house-breaking purposes—which naturally led to more smoking.
As Indigo was exploring the backyard, I began to imagine a body part cemetery with white crosses in the corner of the property up on the hill. There would be one for each breast, my uterus, two fallopian tubes, and two ovaries, seven in all. Wow, I realized, there was a cross for every body part that is associated with the body as female. Was I even a woman anymore? Did I now have to take hormone pills to be artificially female? Does being a woman come from a bottle of pills? I felt like I had been a male, a warrior, for so long, I really didn’t know what being female felt like. I wondered if on some level that functioning as a male—a sole provider, ambitious professional, cancer warrior—had made the female parts of me become diseased, rejected, discarded, violently removed for some unconscious reason. I knew I enjoyed being a mother, although not a very touchy-feely one. I enjoyed home endeavors, crafts, sewing, embroidery, my Gene dolls, friendships, flowers, color, music, talking on the phone, shopping, clothes, makeup.
