The following list is from a cancer survivor, Judy Engibous, posted on Hester Hill Schnipper’s blog Living with Breast Cancer.
We first published it back in March of 2009 but are “reloading” it in recognition of Showtimes’ The Big C starring Laura Linney. We were wondering if the story could be considered an example of “Participatory Medicine” with Linney’s character being an “e-patient.”
10. Being able to shamelessly make fun of smokers. Soon after I was diagnosed but before I started chemo, I was taking my hair alter ego, prenamed Bianca by Rene of Paris, to get her first haircut, which transformed her from go-go dancer to something resembling my real hair. While I was waiting for the 66 bus, a young guy lit up a cigarette near me. As someone who has always hated the smell of cigarettes, I got up to move away and politely remarked, “Sorry. Already got one kind of cancer; don’t need another.” When we both got on the 66 a few minutes later, he still looked shaken.
9. Being able to make fun of the medical profession. Life after cancer can mean being watched like a hawk for recurrence. My first mammogram after cancer led to an ultrasound which led to an MRI which led to a needle biopsy guided by ultrasound. For this last adventure, I had an ultrasound technician running the ultrasound machine, a nurse practitioner guiding the needle, and a radiologist running the whole show. I of course couldn’t resist pointing out, “You people do realize that this looks like the punchline to a bad joke about how many medical professionals does it take to do a biopsy?” They weren’t real happy about that, which made it even funnier for me.
8. Being able to make fun of yourself. At Disneyworld over Thanksgiving of 2006, I stood in a very long line, even with so-called Express Pass, to ride a simulated hang glider. Since the ride required taking off hats, I had to take off not only my hat but my hairpiece Curly (I had another one named Moe; they had no top parts because they were only to be worn under hats). Afterwards, putting everything back on, I noticed some people watching me. I calmly said, “When I got in that line, I still had hair.”
7. Being able to lose your inhibitions about body parts that are normally mercifully hidden. When I had radiation, I had to meet with the radiation oncologist once a week, usually in an examining room next to the treatment room so that he could check the area being treated. One time he had a busy morning, so I had to go upstairs to meet with him in his regular office. When the office person apologized for my having had to go through the hospital wearing a johnny, I replied, “Oh, that’s no problem. I pose topless every morning in front of two to four people.” I then actually had to EXPLAIN that I was referring to the radiation treatments, not to something else. On the other hand, I did get to combine #s 9 and 8 above. I should add that when I found myself referring to the radiation technicians behind their backs as androids, I baked them cookies, which helped my attitude.
6. Being able to occasionally make fun of people who are sick. It seems that every winter, someone in my office comes down with a cough that lasts so long that it should pay rent. He was hacking near me one day last winter when I turned to him and said, “You really should have that cough checked out. You know you’re not doing well when you’re sounding sicker than a cancer patient.”
5. Being able to come up with creative answers when you don’t want to talk about something. The first day I wore Bianca to work, where I hadn’t told many people about the cancer yet, people complimented my new “haircut.” One of my co-workers, call her X, was particularly curious about what my hairdresser had done, saying, “Now I want to know exactly what she did to your hair. Did she put foil on it, did she wrap it ….” As a Christian, I knew I couldn’t lie, and not only that, I’ve never had a hairdresser color my hair so that I wouldn’t have been able to lie convincingly anyway. But I also wasn’t ready to say that Bianca was a wig and why. (I had taken the day before off work to go on a fall foliage day trip with my mother, who was visiting for chemo #2, and I wound up spending the trip pulling wisps of falling hair out of my head, finally having to call my hairdresser to come shave my head at the end of the day, which is apparently part of the cancer experience with a woman’s regular hairdresser.) Thinking rapidly on my feet, I explained, “Well, Aisha’s been cutting my hair since 2000, and I’m really nearsighted, so I take off my glasses, and she does what she needs to do, and I put them back on when she’s done.” All of it was the truth, and I laughed on the inside. Later, when I was more willing to discuss things, I found out that X was a breast cancer survivor herself, one who rarely talked about it.
4. Discovering your inner control freak or other parts of yourself, or possibly just coming to appreciate them more. Before cancer, I denied having an inner control freak because how could I possibly be a control freak if I kept things messy on my desk and in my apartment? With cancer, the freak roared. I was very controlling about who I let help me because I wanted the people around me to be people I could trust to be there after the experience was over. When I read that some people have a harder time after treatment for cancer ends than during it because of getting used to getting more attention, it connected with something I had felt in my gut. I also didn’t want people bringing me food, a common offer, because I live half a block from a grocery store, and food was one of the few pleasures I still had while going through treatment. It was sometimes hard to eat when I was recovering from chemo, and I have very particular taste in food, which actually changed temporarily while I was in treatment. It was easiest to buy my food myself, especially because I could.
A related discovery was that some of the parts of myself that I liked least and that other people like least turned out to be unlikely allies. Being too pushy became helpful for dragging myself out of bed on the Mondays after Friday chemos, when I still felt crummy. Having too much energy turned out to be an asset going into a battle that drains energy. I gained a new appreciation for God’s not having made a mistake in how He made me; I had certainly had my doubts about that before. I’d like to think that my insistence on keeping things as normal as possible while I was going through treatment, even if I did look controlling, helped me recover faster. Three months and five days after my last radiation treatment, I was dancing up a storm at my niece’s wedding, which effectively answered the questions about how I was feeling and whether I had my energy back. It was great realizing that not only had my bad dancing never looked so good but that where I used to be annoying with my excess energy, now I was inspiring. Cancer is good PR.
3. Finding out what great people you have in your life. The flip side also applies. Cancer is a jerk detector – enough said.
2. Being able to administer a shot of perspective when needed. Christmas of 2006 fell between chemos 7 and 8, so my parents flew out to visit me because I did not want to get on a germ-filled airplane after seven rounds of immune-compromising chemotherapy. This past year, I was so happy to have hair and be able to travel to visit them. The line to go through security at the airport was long, and a woman in her 20′s behind me started fussing about how awful the line was, how slow it was, how the airline really could be handling this better, etc. I turned back to her and happily said, “You know, this time last year I was battling breast cancer.” I then literally growled,”do not whine near me.” The result was a very brief pleasant conversation and then some wonderful silence.
1. Finding out that I was stronger than I thought I was, with God’s help. I’m still finding out how cancer has changed me. I don’t want to overstate this, but I do think I’m both stronger and softer. Before cancer I think I was very tough as a cover for being afraid that I wasn’t strong enough, fearing that something would happen that I couldn’t handle and that I might fall apart. Cancer was by far the most difficult thing I’ve ever been through. Unemployment, my previous reference point for hell, was minor league compared to cancer. Getting up to go to work when I felt bad from chemo was a challenge, although staying home for those months would have been worse emotionally and financially.
Having drainage tubes coming out of my chest for a week after my surgery, with small bottles attached that had to be drained twice a day, made me feel like some sort of odd cow that had to be milked. Going through 33 rounds of radiation therapy was another marathon because it was similar to going back into the sun right after being sunburned. And I never got used to seeing myself bald. There were weekends when I could not seem to stop crying every time I thought of what I was going through and how awful I felt. Some mornings I would lie in bed and repeat, “I can do all things through Christ who strengthens me” like a mantra before I got up and faced the day. Yet I did face and get through each day – through seven months of treatment.
While I wouldn’t want to do it again, I’m grateful for the experience and what it taught me. All this is more information than I would give a “civilian,” and the only reason I mention the grimmer and more personal details is that if a wimp like me, whose main support book was subtitled “A Chicken’s Guide for Living with Breast Cancer,” can get through cancer, than so can anyone. And a year after my treatments ended, I look back down the road and am thankful — to my family, friends, office, medical team, and God who is over all.
Michele Berman is a pediatrician who blogs at Celebrity Diagnosis.
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