A Kick-Ass Fairy: A Memoir
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I spent the next few weeks trying to work while at the same time making a flood of medical appointments with specialists, each recommending their particular brand of roadside remedy. I found out that the treatment was relatively standardized, based on tumor size, grade, and the degree of metastasis. The doctors told me that after the treatments, I had somewhere around an 80 percent chance of being cancer-free for five years. This news certainly was not as optimistic as the first time around, but I still felt hopeful.
The only way to deal with the barrage of good and bad news was to take one day at a time, literally. I already knew that I was a strong—whatever it is, I can take it—type of person. I couldn’t help but remember the expression “God never gives you more than you can bear.” I think I first heard that from my maternal grandmother at my first husband’s funeral. I remembered thinking at the time, Why would God give you these unhappy and sad times and then give you more than you can bear? I thought the whole expression was absolutely ridiculous. I knew I would get through this and was not yet ready to fold up my tent, but I was sad that another year of my life would be gone when this episode was over with.
I decided to heed my therapist’s advice and keep a journal as best I could. I found the perfect journal. The cover art was by Mary Engelbreit, and it was aptly titled “Snap Out Of It.”
August 3, 1995
I don’t think I can be superwoman anymore. I’m starting to tremble. I can’t think. I can’t finish sentences. I feel like I’m going to throw up most of the day. Tomorrow I am not working a full day. I’m leaving at lunch.
I’m starting to feel scared. I’m tired of all this waiting. I want to know what I’m dealing with. One thing I do know, I don’t have time for anything. Not enough sleep, not enough time for the children, no time for me.
My therapist told me today that my life is killing me. I’ve known this and have told Doug this exact same thing for the last year. What do I change? I don’t know what I am doing wrong.
August 7
We celebrated Brad’s 5th birthday a couple of days ago. His party was at the Jungle, which is an indoor play gym. He had a wonderful time. He’s all boy—rough, tough, and tumble. Kim has her best friend from NJ here. Kim has been testy and has been getting in a lot of trouble. We haven’t decided if she is showing off or acting out. In any case, we don’t like it.
Tomorrow is a day at the hospital. It starts off with a visit with the radiation oncologist, followed shortly after with blood work, a radioisotope injection for the bone scan, chest X-ray, a break for lunch, and then for the signature treatment, the bone scan. What fun!
I’m really starting to get cranky. I keep dreaming about a crown on my tooth that keeps coming off and I bite it back down. (Interpretation—I’m either about to lose it like a volcanic eruption or there is an unplugging of the dike or, put simply, I’m just falling apart.)
We went to the ocean yesterday at Santa Cruz. I love the ocean. It is so peaceful and healing there for me. I love the smell, the sound of the waves, the seagulls. I have a CD of the waves. My family tells me I’m crazy.
August 8
Well, today wasn’t too awful when it is put into perspective. The good news is that the bone scan was negative. The bad news was that the 2.0 cm tumor was as virulently aggressive as one could get. An SBR grade III, estrogen receptor negative, therefore, no tamoxifen. It even had hair in it.
I didn’t think about work all day. It was wonderful. Doug and I went out after lunch and bought paint for the dollhouse kit he gave me for my birthday. I’m so excited. I really think this is going to be so much fun for Kim and me to do. I identified all of the parts today. Now I’m ready to sand.
What we do know from today? Radiation for 5½ weeks, daily. Supposedly that would kill any residual DCIS in the breast, which I just learned they found as well. I hate this.
August 11
My youngest sister Diane sent me a letter apologizing for her behavior when I was in NJ a month ago. She is so unhappy. She is an at-home mother of four children with maybe seven or eight years between the oldest and youngest. While I was visiting her, she was always yelling at her kids and smacked one. I told her to calm down and she told me that at least she knew what was happening to her children. She said since I had a nanny, what did I know? I feel so lucky when I look at her life. Anyway, she sent me a book When God Doesn’t Make Sense. I don’t think I want to read it. I don’t feel like I’m being punished or “why is this happening to me?” like the last time. I feel like the last time prepared me for this time.
I saw the oncologist today. He is saying 6 months of chemo, which is half the treatment time I had imagined. I don’t understand how I could feel so good. Do you think I’m deluded or have perhaps become immune? Am I in shock? Are all the prayers for me working?
It is definitely helping that Doug is being more supportive. I actually think we are closer since this has happened. Wow, isn’t that the way it is supposed to be!
August 13
Friday night we went to San Francisco for dinner. Afterwards we went dancing. It’s so great to have fun. I laughed a lot.
Yesterday I took Kim and her girlfriend to English tea at the Sheraton Palace Garden Court restaurant. I felt like we were living in Victoria magazine.
Overall, it was a nice weekend. Too busy as usual. I didn’t get any time to read or work on the dollhouse. I called Simone today—the woman in my jazz dance class at the gym who just found out she has lymphoma. Her situation is much more serious than mine right now. I hope I was a help to her.
This afternoon a friend came over. After she left, I went shopping. That’s it for tonight. We see the surgeon tomorrow and get the lowdown.
’Till then … (I’m listening to the Mills Brothers—one of my father’s favorite groups.)
August 25
I really enjoyed spending time with Brad today. He is just such a joy. We went out for ice cream and registered for kindergarten. I worked on my dollhouse while he did a dinosaur connect the dots. I love him so much.
Tonight Kim and I went to the mall. She says her friend Adam makes her feel special and he helps her to feel better about things. I think I’ll let them spend more time together. I really want her to be happy.
August 30
Things are calmer now. I had the lymph node surgery two days ago. The surgery went well. In other words, I woke up in pain with a drain. The news was bad. Of 16 nodes sampled, one was completely breast cancer, the rest were abnormal. I can’t believe this is all happening. How did it all change so fast? What it means now is that I‘ll need to go on Adriamycin for 4 doses and then get CMF (cytoxan, methotrexate and 5-fluorouracil) for 8. This will happen every 3 weeks. I’ll lose my hair everywhere, and I guess I’ll get pretty sick.
I’m scared. What if I’m not here to see my kids grow up? I hope I can keep my job. It’s hard to deal with so much loss all the time.
Lyn came over and started crying uncontrollably about me losing my hair. I didn’t cry. I told her it would be all right. Who am I kidding anyway? Doug has been behaving better. When he told me that the therapist who leads the male group (now referred to by me as “the he-man women-haters club”) said, “Your wife better start thinking about what she is doing to cause her cancer,” I blew a gasket. I threatened that if he didn’t leave that group, I was leaving him. Let’s talk about the blame-the-victim game. Just what I needed when he was supposed to learn empathy. He promised he is going to get individual counseling again.
I have to go have a heart test, a Mugascan, because of the Adriamycin. It’s so toxic it burns your skin. What does it do to your insides? They are going to put the port in my arm in a couple of weeks. I have decided that I am going to cut my hair very short, probably next week, because I don’t want to deal with its falling out in chunks. I want to know if I am going to be OK.
When is someone going to wake me up? Am I really in hell now? Maybe I died during my first surgery and all the rest since then is hell.
All we can do is pray and have the faith to believe God will see us through all of this.
September 7
I have gone back to work on day 3. I am trying to limit my hours. There is so much going on there. I haven’t been sleeping well. Last night I think I slept with my eye open. Today it is blood red and will not stop tearing. I will have to see how it is in the morning.
The children have started school. It is so busy around here with so much to manage. I worry about everything. I sound just like my mother, and Kim sounds like me. I am going to send her for counseling. Hopefully, it will break the worry cycle. Tomorrow I have some blood work and the heart scan to get a baseline before starting the Adriamycin, since it’s so cardiotoxic—Great! My parents are coming, and I see the therapist today. Another action-packed day. I hope I sleep.
September 19
The Mugascan went fine except that I had an eye infection and my eye was draining into my ear, tickling me, and I couldn’t move. I started crying, thanking God when they were able to draw my blood successfully.
I had the Port-A-Cath surgery, experiencing another layer of hell. I woke up during the surgery. I couldn’t move. I had an oxygen mask on. They were trying to thread the catheter into my arm and talking about how it wasn’t working. I tried to shake my head back and forth to let them know that I was not asleep. Eventually, they realized I was conscious and knocked me out again. I am still having nightmares about being trapped, screaming, and no one hears, nobody cares if they do hear; either way, there is no help.
They tried both arms and wound up putting the port in the side where my lymph nodes were just removed, the side where, I was told, you should not even carry a purse on to avoid lymphedema. It is also my writing side. Both of my forearms are bruised horribly and are so swollen I look like Popeye or Bluto. I was exhausted after that day.
My parents were waiting at my house when I got home. My mother appears so helpless. She doesn’t know what to do. This doesn’t make me feel any better. Dad is very quiet. He doesn’t know what to say. He spends his time with Brad, playing. Well, at least that keeps Brad busy.
Doug and my mother went with me for the first chemo treatment the next day. The nurses put this huge hooked needle into my swollen, bruised arm. I think some of the chemo leaked out. They call Adriamycin the red devil. They give you so many drugs. I felt strung out like a taut cord. The doctor would give me only Compazine for the possible nausea. After I got home, I felt like I was electrified. I didn’t feel like eating and tried to relax in my room. Then the vomiting hit. While this was going on, I could hear my mother, who decided to clean all of my brass planters, banging and clanging from the kitchen. I asked to see Doug, who was with my parents and not me.
“Could you please ask my mother to stop all that banging?”
He asked her very nicely, but of course, she reacted, “I’m only trying to help. Nurses make the worst patients.”
Thanks, Mom.
I felt a little better in the morning. My mother and I went wig shopping. It was hard, but we tried to make it fun. Should I be daring and blonde, short or long? Who am I kidding? I want my hair. I decided not to deal with this right now.
My parents have left. They said that they expected me to be more incapacitated. Sorry to disappoint you both. I was and still am cranky and nasty. I pray all the time.
Kim has started seeing a therapist. Today, the latest news was that she does not like food anymore. Why is she so unhappy? It didn’t help that my mother got right in her face with that pointer finger of hers and told her that she better start being nice to her mother, because her mother was my mother’s daughter and none of her problems were as important as her daughter’s.
“So knock it off right now!”
Thanks again, Mom.
September 21
Beginning next week we will be focusing on getting therapy, back to the Wellness Community again, individual counseling for both of us, plus Kim. My God, what have our lives become? We are such a textbook case of a family in crisis. Things just have to get better. I’m glad Doug is going. I pray it helps.
I feel like I’m already being passed over at work. I am starting to think it would actually be nice to take a break. But I know that would still be no guarantee I would slow down. I am feeling a little more energy every day, even without sleep. My left arm, armpit, and breast are still sore, especially where the port is. My next chemo is the first week of October, yeah!
Kim’s therapist told me yesterday that Kim wants to know more about her father. I have a trunk full of his things that I’ve stored for 12 years. I probably haven’t opened it in 10. I told Kim we could look in it on Sunday.
I stopped writing in my journal. Some things just had to go. I was starting to feel like a leper, cut off from the living. Time had become suspended for me. I was a real cancer patient, fighting in the trenches in the cancer war. Meanwhile, life was going on for everyone else. I was receiving many “thinking of you” cards, plants, flowers, and books. The telephone never stopped ringing; close friends and everyone in the family wanted to get the daily update. It was exhausting, and I still wasn’t sleeping.
I had returned to work full time until the next chemo treatment. I began taking every kind of drug that I could think of to help me sleep at night. Nothing worked. Every time I started to fall asleep, I would startle awake because of the nightmares. I was having a recurrent nightmare where I was trapped in a cage with a raging Bengal tiger. Just when the tiger was about to kill me with its huge claws, I would wake up in terror, dripping with sweat, my heart racing. I think several weeks had passed since I last slept well.
My sister Alane sent me some books on dealing with cancer and also a book called Embraced by the Light, by Betty J. Eadie. I had always been an avid reader since high school and I read every night, usually ripping through at least four or five books per month. I loved to learn and understand other people’s experiences. I enjoyed my monthly book club. I was a member of a private library in San Francisco and was involved in other organizations where I could go to author readings. I read biographies, fiction, nonfiction, and I was now becoming addicted to self-help books and the cancer recovery genre. I was devouring books on relaxation techniques, nutrition, and total well-being. My focus then shifted to Taoism, Buddhist thinking, Ayurvedic medicine, Chinese medicine, saints, angels, and the Bible. I probably retained 2 percent of what I read, and internalized and implemented even less.
However, I was very affected by Embraced by the Light. It was about what the author had learned about life on earth after a temporary death experience. The part of the book that was most intriguing was Eadie’s describing how all of us exist as eternal spiritual beings and opt to spend some time on earth as humans. Before we are born, we select the types of experiences we need to have to grow spiritually, with the ultimate goal being that we become more loving. Prior to being born, as spirits, we mutually agree to share the human journey together at the same time in order to help each other achieve our goals.
The author’s story was Christian-based and not too far-fetched from what I knew on some deep level already. I found the book very compelling because it helped me remember the transitory nature of my current situation. It reminded me that I was on earth for a reason and that the people in my life were there for a specific purpose as well. I was to about to begin my long journey of learning perspective.
I sent my father a copy of the book, since he was extremely anxious about having a recommended second heart bypass operation. He rarely read, but he read this book. In some small way I think reading this book helped him to be less afraid. He took the leap and successfully survived the operation, which bought him several more years with his family without constant chest pains.
None of
this is to say that I began sleeping peacefully or stopped feeling trepidation about my future.
I went to see my oncologist and told him that in spite of all of the sleeping medicine I had tried, which included cocktails of different combinations of pills, I was still not sleeping. I told him I wanted him to refer me to a hypnotherapist. He was reluctant to do this, especially since I was in an HMO and everything had to be approved medically. But I was not going to take no for an answer. Finally, with some reservations, he referred me to an internist who also happened to be trained in hypnosis.
I went to see this doctor twice. I felt he was an exceptional person. He had been an emergency room physician earlier in his career and had become a hypnotherapist to help himself deal with his own stress. He explained to me that, simply put, hypnotherapy was deep relaxation with guided imagery, no hocus-pocus involved.
It was surprisingly easy for me, the ultimate control freak, to relax this way. I remember everything that happened. He told me to imagine somewhere safe where I was happy. I immediately became myself as a child in my imagination. I was in a large, warm, dance studio with wood floors and filtered late afternoon sun streaming in from the windows. The studio, naturally, was in New York City. I was dancing with my favorite red Capezio dance shoes on from when I was about 4 or 5. He told me to imagine the word Relax. So I did. He told me to trace each letter. My imagined Relax was in a beautiful script style, and I danced my tracing of all the connected letters musically in some uneducated form of ballet. I started to feel calmer and better. He told me to do this whenever I felt stressed out. It was that easy. I was open to trying it.
The second time I saw him I told him that I was doing better but that I still had tremendous anxiety about dying and leaving my family. I no longer dreamt about being trapped in the cage about to be ravaged by the tiger, but I was still frightened about my future. This time during the hypnosis, he explained to me that most people walk around with this “veil of invulnerability” and that since I had been diagnosed with bilateral breast cancer, I now knew that I was vulnerable to forces that were out of my control. He then recited the 23rd Psalm from his Bible.