June 2007
My eyes look clear and blue today. They don’t have those faded fans of yellow in them the way they did before my breast cancer surgery May 23. I still had them the morning after my second surgery on May 31. I was washing my face in the hotel room and glanced into the mirror and was startled at how much I didn’t look like myself. I looked toxic. The faded blue of my eyes was striped with yellow lines. I felt toxic.
I’ve eaten well and drank lots of tea and this morning I look like a healthy person. I have a little more weight in my face, and this awful short haircut (that I said makes me look like a cancer patient even before I start treatment) is now just a bad haircut.
So it seems wrong, when we go to such lengths to de-toxify ourselves – and I have been de-toxing since pneumonia meds given to me in April, with several trips to Denver, overnight stays, pain, and all the side effects, to get poisoned in order to increase my survivability rate from 62 to 69.
Since I haven’t felt well for months, and no doctors knew, or seems to care why, it not only seems counter-intuitive to deliberately get poisoned, it seems just plain dangerous.
But this morning I am thinking I should bring a bed downstairs to prepare for when I am too tired, or sick to go up and down the stairs to my own bedroom, and last night I looked at wigs and wondered how soon my hair will fall out, and if I can get a wig in time.
I’ve been going to physical therapy to walk and increase my stamina, and to breathe and build back my lung capacity as I’ve continued to be short of breath easily since the pneumonia and the surgeries. My health has become an obsession with me, and I feel like a hypochondriac. Except I have breast cancer and I am not imagining this. It is difficult to feel betrayed by my body, to not know what it is going to do next.
No case manager. Or the case manager is the only one on the team who doesn’t know anything about medicine – because it’s me.
That’s what my friend said after trying to navigate her cancer treatment through the system in her state.
This morning I’ve been thinking – do these oncologists assume that some other doctor is following me with the other health issues? What ensures that all of these things are considered together before the first drop of poison goes through the port?
All of the doctors assumed that I knew that the radiation treatment they sent me to was a clinical study, not the standard treatment, and that no one could assure me of the medical benefit to me from participating. Not one of them explained this to me – not even the radiation oncologist whose job it was. They all assumed something and they were all wrong.
So it would seem that I will need to be my own advocate and ASK QUESTIONS and raise concerns. Too bad I won’t normally know what they are – just like only accidentally discovering what caused my awful reaction to my first surgery. (I was allergic to the antibiotic – IV levaquin – and no one knew it. I had talks with the anesthesiologist to try to prevent a recurrence of the hallucinations and sickness I had during the first one and yet the only thing that prevented it from happening again was that I heard someone say regarding the patient on the other side of a curtain to “start the Levaquin drip.”)
I wanted to turn myself over to this team and just do what they said, and rely on them to take care of me. My sister said after I got these doctors, “well, now you can just relax and trust the doctors instead of having to figure it all out yourself.” That was before the surgery, and before the second surgery, and before I visited the radiation oncologist who tried to talk me into the experimental radiation treatment protocol.
July 12
And that was before I had the chemo port surgery, which led to blood clots in my arm and reaction to dressings, so I had the port removed and a combination of things resulted in my uneasy decision to not have chemo. That’s another story to write about another time . . .too much turmoil to review right now. In the end, the oncologist said it was probably the best decision for me at the time since I was already not well, and the important thing was for me to be comfortable with my decision. I said, “that may not ever happen.”
I have been so RELAXED since coming to the city for radiation treatment on July 4. I don’t remember the last time I felt this relaxed, calm, free from anxiety. Surely not since before the cows were sold. I don’t know if it is because
I am finally done running up and down the road to doctors, or
I am finally done making decisions about treatment, and
I’m getting treatment, or
I am not having to worry about getting up and going to work in the office every day, or
I needed to get away.
Ordinarily when I go to the city I am ready to get back out to the country after a couple of days whether or not I am in meetings or visiting family. It has always been like I’m cooped up, hemmed in, can’t get enough air or space.
This time I’m just plain relieved to be here.
I feel secure at the foot of the mountains, not overwhelmed and threatened.
I feel secure in a place where I can get the treatment I need, the food I was told to eat, and the herbs and supplements I need. I don’t have to be alone, I’m where the kids are, where they are close enough I can get in the car and drive a few minutes to see the little kids, and feed them supper, and listen to their stories.
I don’t feel pressured. I don’t feel used up, or put upon, or called upon to do what I no longer feel that I can do. It is almost as if breast cancer gave me the break I needed.
I am tired of living where there isn’t anything: no books, no politics, no succor, no services, no medical services that I need right now.
My house sticking up out of the ground with no shelter from the wind isn’t enough any more.
“Rest and Radiation”
When I was going through radiation treatment, my energy was focused on BE-ing in treatment and I had a routine that kept me focused: up at the same time every morning, shower, breakfast made up of certain foods, dress well and put on some make-up, go to treatment, go to the grocery store or the farmers market for fresh fruits and vegetables and the other foods I was instructed to eat, some physical exercise, if I wasn’t too tired, rest, and another meal. Two or three times a week I had healing touch, or acupuncture, or physical therapy, or visited my naturopathic physician about my diet and supplements. Oh, and about once a week, a trip to the library.
It wasn’t like me to make myself up, or wear the kinds of feminine clothes I bought when I had lost some weight and needed a few new summer things. But there was one woman who came to radiation treatment every morning looking her best – she wore makeup, fixed her hair (or had a wig), and always had on a nice outfit. So instead of jeans and a t-shirt and no make-up, I decided it would be good for me to make an effort to care about how I looked, hoping it would also affect how I felt.
My energy became depleted by the radiation treatments and I could only focus it where it needed to be, and I had to finish in the morning anything that I had to get done that day because some days I just couldn’t do anything more after lunch. I couldn’t conserve my energy in the morning and use it later. I couldn’t refresh or restore my energy with a nap or rest.
So my field of energy closed in and wound around me tightly where I protected it to use to complete treatment, eat, and sleep.
Now after treatment, as I begin to have more energy, as the periods of time without overwhelming fatigue grow longer, I spend more hours at my job, and in some work around my house.
In a sense, through, it feels like when I enclosed my field of energy during treatment and recovery, I shut all the doors to the flow of energy between myself and the outside world – other people, the environment, the consciousness of . . . . . . .
So now I have nothing outside myself to draw on to help restore myself or connect with others and I resent every demand by other people for my attention because it draws on energy that I can’t restore or increase. These demands are drawing on a non-renewable resource.
From my sketchbook
When I was going through my sketchbook this morning I found journal entries that I never made a part of this online journal. Most of these were written during treatment and when I went back to work. If I don’t include some of them, there are holes in this story. I’m not going to enter them in chronological order, but will go back and try to organize them later.
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Undated
Thursday. I’m having dreams in the afternoon. I am having to leave work and come home to sleep all afternoon because not to do so means exposing my weakness and emotional lack of control to others that I am supposed to be supervising at work. Today I couldn’t answer a question about a budget that I put together yesterday. I don’t understand what I wrote yesterday. I was sitting at my desk and looking blankly at the computer screen most of the morning and not knowing where to begin. Angry and frustrated with people who were not doing their jobs but were thinking I should do it for them, and then when I did, they disregarded what I did. I said, “I need people to start thinking independently!!” And then I burst into tears thirty minutes later for not being able to communicate better. WHO is not communicating!!?? It has been very difficult going back to work with this fatigue and try to take my position over people who believe they got alone fine without me for two months.
When I’m this tired, I’m discouraged about everything.
Later — no need to be discouraged just because my body says rest. I’m lucky I can take the time to rest. I’m looking through the wrong end of the telescope.
I want to go help a friend in Denver, then I realize I’m sitting here paralyzed in my house, too.
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The author of She Who Dreams had dreams of three snakes associated with her cancer and treatment.
My three snakes were real – not dreams. The day before my first chemotherapy treatment appointment in Denver, I stood at the front door wondering how I would ever take care of this place with 5 acres. I had just had breast cancer surgery on the left side. A chemo port had been put in my right arm and my entire arm was hot, red, swollen, and breaking out. I went out and walked through the front yard, almost stepping on a long yellow and green ribbon snake. I saw a snake in the side yard, and another one in the back yard in the grass. Three snakes in one trip around the house. This had never happened before. Just then a crow flew into the tree beside the house and at me. (“The worst is over,” in the old Mexican proverb. “The crow can’t be blacker than it’s wing.”)
I went straight into the house and called the doctor’s office and cancelled my chemo. I made an appointment to have the chemo port taken out.
Of course, this was the last thing that happened after a long agonizing process of trying to decide logially whether to have chemo and several false starts to the process, including being told at one time I would need to chance oncologists and locations for treatment. I used the numbers one doctor gave me, and decided I needed to do it. The second doctor said, “they’re just numbers.” I asked him, if I don’t use numbers, what else is there? Everything in me told me it made no sense to be poisoned to make myself well. My intuition was telling me not to do it. I was trying to ignore my intuition.
Actually, my body was also telling me not to do it. When I had the port removed, we discovered that I had several blood clots at both ends of the port, an allergic reaction to the latex and adhesive, and I had to start on daily shots of Heparin in my stomach for the blood clots.
It just took three snakes and a crow to get my attention.
I don’t advocate that anyone else wait for snakes to make a decision. But it is one of the most difficult and agonizing decisions that I’ve ever made. Later, my doctor said she thought it was the best decision for me at the time, and the important thing was for me to be comfortable with it. “Well, that may not happen,” I told her.
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Tonight after cleaning my house and breathing and focusing on setting up my living space for reading and art, I opened the curtains and turned on the front porch light and am sitting here watching it snow.
I think my anxiety level is decreasing. Or, maybe it’s the xanex! I called the social worker at the doctor’s office today and got names of some counselors to call and make an appointment to talk to someone. Gotta do this. Gotta change something.
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My friend who also has breast cancer called today and we agree that this post-treatment stage is more emotional and tiring. I finally felt rested enough when I woke up yesterday afternoon to clean the livingroom and wash the dishes. I arranged the furniture so I have the art table under the east window by the cupboard I’m going to use for art supplies.
Lesson: Rest until done resting. Then do one next thing. Don’t worry about the next thing when resting.
“He said the right dreams for a man in peril were dreams of peril and all else was the call of languor and of death.” – Cormac McCarthy, The Road.
Just as I sat down to the art table, a young hawk flew up and sat on top of the lattice outside the window. Maybe I have a new totem for this stage. Soaring high and hunting. Skimming the landscape and not getting weighed down in it.
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