Still, it wasn’t all good. I had to cut my hours sometimes or I would have been even more fatigued, putting me at greater risk for tripping and falling. I lose my balance more easily when I’m tired, partly because my strong leg and my back are tired and can’t take up all the compensatory work they usually do. Also, if I’m fatigued, sometimes I am less careful about watching my steps. I hired help in order to keep clients, reducing my own pay to do so. Other accountants work too hard as well, but it is a little different when you have a serious physical limitation. It can limit what you can accumulate in terms of savings, too.
I also always thought I would eventually get out of tax work and become something like a CFO for a non-profit involved with art—maybe one that did programs for underprivileged kids, something like that. Something that would contribute to a better world, and to my soul. But once I had a hundred or more clients, it seemed daunting and irresponsible to switch career tracks.
It has irked me throughout my life when people have said, “Of course, handicapped people can’t work, or don’t work full-time.” What an assumption. Along with this goes the assumption that someone with a handicap must be getting governmental aid. This is available to some, but unless family members subsidize those receiving it, their standards of living are distressing. I still hear this mindset, often from doctors, partly because I just turned seventy (though almost all people I know who are my age are still working). I know so many handicapped people— particularly polio survivors, who tend to be over-achievers, and veterans— who worked all their lives, just as hard as able-bodied people, and did it with greater fatigue issues than anyone knew they were absorbing.
The flip side of “of course you can’t work,” on the other hand, is when our handicaps are discounted or ignored and we are expected to work just as hard as normies. There’s a balance. The Americans with Disabilities Act has helped this, along with getting more accessibility in place, which is huge.
I know of polio survivors who have had careers as doctors or lawyers, and I am in awe that they were able to keep up the pace without experiencing serious health issues. A valiant non-polio paraplegic I know comes to mind: she went to UC Berkeley and met her nurse in her van during class breaks to be catheterized. She became a disabled people’s advocate.
And there’s the famous example of Stephen Hawking, of course. But not all of us are brilliant physicists.
Briefly, in the mid-80s, after I’d sung with the Sufi choir for four years, I thought I might become a professional singer. I auditioned with and took lessons from Judy Davis, a skilled vocal teacher in Oakland who was Barbra Streisand’s West Coast vocal coach. My class included the musicians from Sammy Hagar’s band, which was fun; we rode to classes together and they were nice guys, very funny. But I realized that in order to succeed in the genre I had the most talent for, rhythm and blues, I’d have to pay my dues singing in clubs at night for quite a while before I’d be ready to launch. I was past the bar scene and could not see myself spending a lot of time in those venues. I also ran out of money after my trip to India in 1982 and could no longer afford the voice classes.
Nearly two decades later, after singing in community choruses, choirs, a rock and roll chorus, and a jazz chorus, my polio leg nearly collapsed under me as I walked across the stage during intermission of a big show—pretty scary. I was in my early fifties then, and my voice was still good, but my polio leg was not made for show biz. Even light choreography was way beyond my ability, and it was getting harder and harder to stand up and sing; I needed to sit on a high stool most of the time, which didn’t really work for the rest of the jazz group, who were also in their fifties and sixties but all had two strong legs. Plus, I was tired of 1940s jazz numbers.
So ended my erstwhile avocation as a singer.
One day I looked back and saw I’d been doing tax and accounting for decades, and that I may as well stick with it. By the time Richard asked me to consider retiring, it had been a long time since I’d truly taken stock of what had turned out to be my life’s career.
I took a hard look—and saw that I loved my clients too much and was not quite ready to say goodbye. Quite a surprise for someone who spent so much of her life wondering if she’d made the right decision by going into accounting.
Eight years later, when we saved up almost enough for both of us to retire, I did sell my practice. I have been working as a tax temp for accountants and have one very small bookkeeping job—which, with all I do at home, plus writing and facilitating a writing group, feels like a full-time job. So, I’ve decided to give up the numbers work.
For a handicapped person, this has been a fair career. But I would not recommend tax work, given how fatiguing the hours are. You have to have a lot of physical resilience to do it, unless someone absorbs your tasks at home or supports you for at least a couple of months a year so you can take the breaks you need. However, being able to set my own (long) hours, being able to go out to the car and take a nap, and being able to say, “No, I can’t meet with you that day,” was helpful for my health. If a person has the entrepreneurial spirit, any self-employment that showcases a physically realistic skill is good for a handicapped person, especially if part-time work can be viable.
There are still so many places that handicapped people cannot go. And that doesn’t begin to address the old factors that are gradually falling away, such as, “Crips don’t look good, so avoid hiring them.” My auditing teacher looked right at me in class when he said that the big eight accounting firms in the late 70s were very discriminatory and paid considerable attention to how you looked. You could not expect to be a person of color or to bring a brown bag lunch. Women at that time could not even wear pantsuits! This would have left me with my short, skinny leg and drop foot really exposed.
After I got my degree, I bought three-piece wool suits with skirts, interviewed, and did not get a job with a downtown San Francisco big eight firm. Probably just as well, but these were the kinds of employers where the ADA countered discrimination decades later.
I am glad to see that more developmentally disabled people are now being hired by a variety of businesses. But in general, career choices are somewhat limited for handicapped people, if they want to take care of themselves and be self-supporting, and particularly if they’d like to love what they do. This is true to some degree for everyone, but it’s easier when one doesn’t have to consider a disability. I wish for better outcomes for the people who’ve had no work or struggled repeatedly to find it. I’m just glad I’ve had work, and could support myself sitting down.
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and now, for something different...
I had a slightly suspicious mammogram in 2002. We were just watching the films, doing a mammo every six months. My breast doctor felt, and I agreed, that too many women have unnecessary biopsies and mastectomies. But if you really do have breast cancer, it’s important to find it early, to save your life and possibly your breast.
After one of my semi-annual mammos, my primary care doctor at the time called me and said, “Why don’t you just get a biopsy? Are you going to get mammograms every six months for the rest of your life?” My breast doctor and I had thought that the latest film looked like the calcifications we were seeing were getting closer together. We surmised that maybe whatever was going on in there was shrinking. But the day before my primary had called me with her imploring message, I had read in Harvard Women’s Health Watch Newsletter that the closer calcifications are together, the more probable it is that it’s cancer.
I underwent a stereotactic needle biopsy in July 2004. This involves lying on your stomach on a table with boob holes, getting a basically useless shot of something like Novocain in your breast, getting an ultrasound, and having a needle the size of a pencil lead shot into your breast. It hurt like hell, even with “something to numb me.” I cried, and most of the women I know who have had them told me they also cried. The radiologist told me that the chance of my actually having cance
r was less than 8 percent; it was unlikely they’d find any cancer in the sample; and we’d talk about what would happen next only if there were cancer present.
I had several days of high tension waiting while the lab cultured the sample. My breast doctor called me from her cell phone on a Sunday. She wanted to save me from going through the rest of the weekend worrying.
“I have ___ news,” she told me. “You ____ have cancer.”
What I heard was, “I have good news; you don’t have cancer”—so I answered, “Oh, good!”
Then she repeated what she’d really said, with more emphasis on the “BAD” news and you “DO” have cancer.
In my biopsy “material,” otherwise known to me as a dearly beloved part of my breast, was a BB-sized tumor of stage one invasive cancer (smallest tumor ever detected in Marin County), and a lot of ductal carcinoma in situ, or DCIS, which is pre-cancer that stays in the eensy milk duct and is not life-threatening . . . until it turns into something more aggressive and invades the breast tissue. It’s a slow grower, most of the time, but still—cancer.
Clunk. I let it sink in.
Richard went with me to the initial strategy consultation with my accomplished surgeon. It’s a good idea when faced with something like this to have another pair of reliable ears along, and to take notes. Additionally, there was the waiting, because we would not know if there was more and worse cancer lurking in there until a surgical lumpectomy was performed. In the weeks after the diagnosis, I was sometimes in tears, and a lot of the time I just tried to distract myself and not dwell on it.
At one point in an interview in her office, my breast doc said, “It’s not fair, is it?”
I hesitated a moment, thinking, Well, cancer is probably never fair, but then asked, “What do you mean?”
“Well, having polio, and then having breast cancer, too.”
“Oh,” I said, and thought a moment. “No, I guess it’s not.” I had long before abandoned the concept of fairness in life experiences. Breast cancer was scary, but for me it was yet another thing to overcome. I hoped I would not have to have a mastectomy, and was definitely not happy that I was facing at least one surgery and would be anesthetized for it. But I’d been overcoming things I didn’t want to deal with for fifty years.
A month later, I had a lumpectomy. In the initial interview with the hospital, I told them that I would not go into surgery until I had talked to the anesthesiologist, because polio people have very strong reactions to anesthesia. We sometimes need a little more to put us out, but we take forever to come out of it. And I had gotten quite sick in the past from anesthesia.
My surgeon had told me that Dr. Stephen Licata, the doctor doing my “cocktail” for the surgery, was very experienced and had formerly been a pharmacist, so he was an expert. The night before my surgery I got his call, which I’d been anxiously awaiting, and he listened carefully. He took great care of me on the actual day. I felt fine afterward and came out of the haze better than I’d ever done in the past. Later I asked him for the formula so I’d be able to pass it on to another anesthesiologist if I ever had to have surgery again.
Days of more waiting after the surgery, and then the sorry phone call that said good news, bad news: there was no more stage one cancer, it all came out in the original needle biopsy, but my surgeon had not gotten clear margins on the DCIS. This meant a second lumpectomy. (“Take it, take another little piece of my breast, now, dar-lin’.”) Dr. Licata changed his schedule to be there for me. In this second operation, my nimble surgeon got acceptable margins.
Every tumor in Marin County is discussed at a tumor board. Some of the doctors there thought that the second margins were too small and I should have a mastectomy. My surgeon argued with them that I was a polio patient, that I had concerns about disfigurement. “She can have reconstruction,” they countered. My doctor told them that I could not give up a back muscle, especially on that side, to support reconstruction. (The common procedure is to pull a back muscle around to support the substitute breast. In my interview with a well-respected plastic surgeon, he said that it might also be possible to take abdominal muscle, but of course I need that for core strength since my degenerated hip is so weak.)
I so appreciated that my surgeon was my heroine in this debate. In the end, the tumor board agreed that I could move on to radiation.
You have to get radiation after a lumpectomy in order to kill off any stray cancer cells that may remain. Although there is some danger of radiation causing cancer, any new cancer cells stimulated by it are generally killed off by leftover radiation, which stays in your system for a while. This combination of treatments makes your chance of a recurrence about the same as if you’d had a mastectomy, but you still have a breast, or most of one—in my case, about 75 percent of what I’d had before. The drawback is that radiation makes future reconstruction inadvisable or even impossible, if one has a recurrence.
I took my beat-up breast to the radiological oncologist’s office every weekday for seven weeks, with only one or two days off. The technicians were caring and friendly; they knew it was scary for all of us cancer patients. When I let the doctor know that I was a singer, she also made sure that the radiation missed my lung. (If it hits the lung, it can leave you with hoarseness or shortness of breath.)
Radiation was greatly tiring over time, and it also caused nerves in my breast to fire off painful electrical “shooters”—it took a couple of years for that to completely stop. I had to take a nap every day for months and then sleep nine hours a night. Fatigue on top of my normal fatigue.
I completed my course of radiation on December 22, and was back at work doing taxes two weeks later. That was not an easy season. I told my clients that I could not work such long hours that year; thankfully, they were all considerate about that. (The year my mom died, some of my clients were angry that I had to file more extensions and some found a new accountant, so I was relieved that for cancer, everyone had some compassion.)
When my radiation course was done I tried to take Tamoxifen, a hormonal drug that reduces your chances of having a recurrence in the first five years. But I began having more and more hot flashes and night sweats, which in turn were causing severe insomnia, right when I was still tired from radiation and was trying to do tax season—always grueling to begin with, without breast cancer lite.
I’d joined a cancer support group facilitated by a wise, considerate breast cancer survivor, and had gone from the “in treatment” group to the “moving on” group. Each group met in separate rooms at a building near Marin General Hospital.
One evening at the “moving on” group, fifteen of us sat around a table, all survivors now. I decided to take a little poll on Tamoxifen vs. aromatase inhibitors (AIs).
“I am looking at taking AIs because I can’t tolerate Tamoxifen,” I told the group, “but I already have joint and muscle pain, and the pharmacology for these drugs indicates that 25 percent of women who take AIs have muscle and joint pain. So, how many of you are taking AIs?”
Twelve of fifteen hands went up.
“And how many of you are experiencing muscle or joint pain?” Same twelve hands.
I know, that’s only anecdotal, not a double-blind study, but still, that’s 100 percent. A year or two later, I learned from a BC survivor who does volunteer coaching of new BC patients that all the women she knew on AIs went off them for a few weeks a year—on vacations or for special occasions—because they were in pain all the rest of the time.
I went back to my oncologist, Dr. Jennifer Lucas, an affable whiz kid from Stanford.
“I’m going off the Tamoxifen, and I am not going to take either of the AIs,” I told her. “I feel that I am a whole person, not just a cancer patient, and polio affects my life on a daily basis more than the threat of cancer. On the Tamoxifen, I feel like my quality of life is so poor that after five years I would be a nervous wreck, totally debilitated by lack of sleep, even more at risk for tripping and falling, and, incidentally, a co
mplete bitch. On the AIs, I am facing an increase in my existing pain issues from polio effects.”
“I’m fine with that!” she said. “You won’t be on hormones, and all three of those drugs increase your risk of blood clots, stroke, and uterine cancer.”
“I also read that women who take low-dose aspirin over a long period of time have a lower incidence of breast cancer,” I said. “What do you think about that?”
“I’m a big believer in aspirin,” she said. “It can’t hurt at that low a dose; go ahead. I think you have a good plan here and I am not worried about you not taking Tamoxifen or AIs.”
So, there you are. A voice of sanity amongst those shaking their heads and saying they were concerned about my cancer risk. Heart disease kills more women than breast cancer. My wise breast surgeon agreed.
I did continue to take a battery of pro-energy, anti-cancer supplements recommended by a skilled acupuncturist (Michael McCulloch of Pine Street Clinic in San Anselmo, CA) who specializes in cancer and is also a Western epidemiologist. These have been tested in double-blind research studies. I still take them, fourteen years after treatment. I sometimes feel like I’m clapping my hands to keep the elephants away—but then again, I’ve had no recurrence. My doctors tell me that the exercise I perform so religiously probably has the most to do with reducing my cancer risk, and of course it’s great for overall health.
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doctors, doctors
Of course, surviving cancer did not put an end to all my other medical woes. After suffering another fall in 2005, concerned that my smaller foot was broken, I made an appointment with an orthopedist I’d never seen before. I would have liked to see Dr. DeMayo, but by then he’d developed arthritis in his hands and become a consultant for Kaiser, leaving me with no orthopedic polio doctor in the San Francisco Bay Area. This new orthopedist knew nothing about polio-affected limbs but had at least been recommended to me by Dr. DeMayo’s successors.
Not a Poster Child Page 24