A Kick-Ass Fairy: A Memoir (21 page)

I need space, quiet and time—lots of it. I never come close to getting anywhere near what I need to process all of this. I have a fantasy of being in a white bedroom with white linens, no decorations. There is a large multipaned window with a chair for gazing outside. I sit in the chair to view the rain on the lush green lawn. I stay in that room, am fed meals, get clean linens, no visitors are allowed. There is time—just time to think, time to cry, and time to heal. I think it might be at an insane asylum.

February 26

Well, it’s official. I’ve been diagnosed as depressed, not clinically depressed but depression caused by “exogenous” forces. I believe much of what I feel is hormonal. Since when don’t I have the capacity to stand up and take on the challenges life brings my way? I started back on Wellbutrin. I’ve come full circle on the hysterectomy. I think I’ve been suffering from this hyster- thing in hysterectomy—namely hysteria. Doug was surprisingly supportive last night. I wonder what will happen. Will we look back and say God that was an awful time but look how much we have grown. I hope I live that long. I am going to do this. Breast cancer was the warning. What if I already have ovarian cancer? One day at a time.

A letter came from Indiana U.—doesn’t look good from the size of it. Poor Kim. (Where is she anyway? She should be home.)

The counselor says my Gene doll thing is very good for my peace of mind—a healthy escape. Yes, I know—a fantasy.

March 1

I feel a bit better. I would love to know, is it my cycle, increasing my hormones, starting on Wellbutrin? I even feel pretty good mentally considering that I’ve been up since 3:30 a.m.

I think a big reason is that we had a relatively quiet weekend. Warriors game Friday, U.S.S. Hornet with Den 10 on Saturday, party Saturday night, errands, church, quiet Sunday—even though Doug griped, slammed, complained, and almost killed a cyclist rather than wait for him to be out of harm’s way.

I noticed Doug has quite a temper and can get downright ugly at times—no patience. I feel good that I did not get sucked into his problem.

March 4

I have this eerie sense of calm about the upcoming surgery, although I’m not too fond of the surgeon. He has too big an ego and is another one that doesn’t listen. I have been saying the Rosary, especially focused on the mysteries. I am particularly attracted to the sorrowful mysteries, which focus on the passion (agony in the garden, scourging at the pillar, crowning with thorns, carrying the cross and the crucifixion). It helps me to have perspective. Also I was happy to receive anointing of the sick and reconciliation on Tuesday. It helps. I have to remember to stay focused on what is important.

I pray that Doug does not make my recovery harder than it has to be, that he has empathy for my pain and that I don’t have ovarian cancer. God, I really want a break. I’m afraid. Poor grandmas.

March 8

We are home. It is over. No news is good news. The doctor says everything looked OK. He will call with the lab results. What’s taking so long? Things have been relatively quiet. Doug has been pretty good. I would define it as quiet strength, I guess. He hasn’t had a whole lot to say, and I certainly don’t feel connected, but at least it has not been brutal.

My tummy is swollen and red. I seem to have feeling below, which Doug did ask me about today. I chuckled inside. I have enough gas to power a thousand ships.

March 10

I am sad. I feel loss. A part of me is gone. Gone is what gave rise to and housed my growing babies. All of a sudden I feel old, no longer a young woman but a mature one. Kim is going to be 18 in just a few days. I remember when I was pregnant with her. That person is still in my head. When will I feel connected? Maybe this is being connected. Maybe this is all there is.

We found out yesterday that there were no signs of ovarian cancer. I don’t understand why I had this symplastic fibroid again. Why do I keep producing them? He said the pathology of my cervix was dysplasia. What a mess. How did I become such a mess? I need to slow down my life and enjoy more. Start looking away from trouble.

I’m still very sore but it’s getting better and the swelling is getting smaller. I haven’t had any drastic hormonal upheaval yet. I do have pronounced hot waves though. It’s kind of like a feverish furnace and then it subsides. I feel mellow to melancholy. If this is as bad as it gets, then I think I’ll be OK.

March 14

Even though I was sore, I dragged the family, even Mom and Dad, to the Del Valle Dog Show in Pleasanton to see the papillons. After a papillon named Kirby won the Westminster Kennel Club Dog Show and after doing research, I’ve decided that this is the type of dog I want. Of course when I told Doug, he said to get a “real” dog. But this dog will be for me. At the show I started talking with breeders about how to obtain a puppy. It sounds harder than adopting a baby. There are waiting lists. They won’t release females, or males for that matter, until they are big enough to decide whether the dog will be pet or show quality. Everyone in the family, except maybe Brad, thinks I’m crazy to want a dog. I don’t care what they think.

For a few hours it was nice to escape into another world even if I felt like I was dragging around balls and chains. I think finding a puppy will be a fun long-term project.

March 16

I went through a few days last week with horrific hot flashes. I felt like if this was to continue in frequency, I’d hurl myself off the Golden Gate Bridge. We’re talking a furnace—gasoline poured on me and lit on fire, drenched, no escape. I upped my Estratest HS to an additional half pill. That seemed to do the trick.

I’m still not sleeping even after taking Ambien (a sleeping pill) last night. My parents arrived last Friday night. I’m trying really hard not to be too cranky. I’m really trying hard to be accepting and ignore their little foibles. When the going gets tough, I go to my room (frequently).

I am enjoying some of the time being with my parents. I know they really love me, but I realize they are getting old. My dad has been very sweet and helpful. He likes to have projects. Mom is helping, but she has horrible rheumatoid arthritis pain now and complains about it all the time. I feel guilty.

Kim turned 18. Wow. She is an adult now, her own person. We still have no news on colleges. It’s in God’s hands.

March 17

I discussed with my parents and Doug at dinner that I’d like to write a book. It’s amazing how consistently I am pooh-poohed. Well, once again, so much for having any expectation of support. They all agreed—why would anyone want to hear about my miserable problems, citing that everyone has problems. I’ll call it The Breast Cancer Chronicles. I’m starting next week, an hour or two a day. If nothing else it will be a history for my children. I’m really excited about going to the Breast Cancer Conference in May. I will be getting more involved.

March 18

How ironic that I had this surgery to save my life and now I just wish I was dead. I’m sick that I don’t have the courage to just blow my brains out. All I can think about the last two days is how I wish I was dead and all of the different ways to kill myself. I hate myself for having no guts.

March 22

Well, this horrible depression is decidedly my hormones or lack thereof. Fortunately or unfortunately—depends on the moment—I’m still here. I’ve never been so depressed. I’m so irritable, lashing out at everyone. I’m alienating my whole family.

Mom and Dad left yesterday, and I feel guilty about their visit—and of course Doug has all these negative comments about my feelings and behaviors that just make me feel worse. Thank God for Clara. She came over last week and rescued me from myself. For three days she sat with me locked up in my room. She helped me to feel like my mental state wasn’t just the hormones but also dealing with having my parents here and them ignoring that anything was wrong. I couldn’t even be near them without feeling I would be mean, biting their heads off or saying something nasty. They are too old and needy themselves. They tried, but this was an extremely difficult situation.

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

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.