After I was diagnosed with breast cancer, I couldn’t help but notice circumstances that, when they arose, seemed to strike me as blatantly unfair. To each I would respond with a dramatic sigh and state emphatically to anyone who would listen, “There ought to be a rule against that!”
Now as the self-proclaimed Menopausal Warrior Queen, I decree that the rules that follow are hereby effective immediately and across the universe.
Okay, so I don’t really have that kind of power. But if I did, here are the ones I would implement with the snap of my noble fingers.
Rule 1: Bad behavior on the breast cancer patient’s part should not be held against her by others, at least not permanently. Actually, this rule was in effect for me although I wasn’t badly behaved all the time. I was at my worst when I was recovering from my mastectomy and breast reconstruction surgery and my husband was my primary caregiver. After a week in the hospital, he drove me home and bundled me off to bed, then set to the design and execution of a well-documented system of round-the-clock checks, meds, and drain line cleanings that would have impressed Florence Nightingale. He made sure I ate on schedule. He arose every hour on the hour, night after night, to lead me to the bathroom since I couldn’t walk without wandering because of the pain medication. He was the model of loving efficiency. Since I was unable do much by myself, I really did need his help. But his unlimited cheerfulness made me want to smack him, so I soon dubbed him the “Nurse Nazi.”
Luckily, he remained steadfast through my emotional outbursts and did not hold them against me. His explanation was that my temporary lack of gratitude was the result of exhaustion, pain, medications and fear which sounded plausible enough to me. Therefore, I dictate that this rule is now in effect for all, henceforth.
Rule 2: Anyone who accompanies you to a diagnostic test should be prepared to dress you once the test is complete. I took a doctor-prescribed Xanax prior to my MRI biopsy and it did the job because I don’t remember any pain or discomfort. The tricky part came when the procedure was finished. I was so out of it that I couldn’t dress myself, so the nurse called my husband from the waiting room to help me. The jeans I wore had slipped off quite easily when I undressed to change into a gown. But getting those same jeans back on proved to be about as difficult as stuffing sausage meat into a casing, only without the spiffy machine. Ed was able to place my feet into the leg openings while I sat on the bench, but when he tried to stand me up my rag doll posture made it difficult for him to pull them up around my waist. His military training served him well as he draped me over his shoulders in a modified fireman’s carry, propping me up so he could slide the jeans over my hips. My giggles over Ed’s groans coming from behind the dressing room curtain caused the nurse to check to see if everything was okay. In retrospect, I was grateful that I hadn’t asked one of our male neighbors to drive me to the test. That would have made the rounds of our neighborhood at lightning speed!
Rule 3: You should not be held responsible for breaking basic fashion rules when coming home from the hospital or at anytime
during treatment.
This rule can keep you off the fashion hook for four or five months, at a minimum. For example, although it was not a combination I would normally wear, drawstring sweat pants, a blouse that buttoned up the front, and pink Crocs on my feet were all I could manage when I left the hospital. Since it was chilly that day, I layered my white terry cloth robe over it all for an attractive finish to the outfit. The good news is, no one cared because everyone leaves the hospital looking like hell anyway. And I didn’t care because… I was on pain meds. Thank God my oldest daughter, ever ready with her camera, was not there or I would certainly have shown up on the back page of Fashion Don’ts in a future Glamour magazine with a black rectangle over my eyes.
Then there are the days during treatment when concocting any outfit, much less a fashionable one, is just too overwhelming. One afternoon after a chemo treatment I answered the doorbell looking a bit green while wearing my trusty terrycloth robe over pink knit pajamas, slippers, and a pink terry turban on my head. A Victoria’s Secret ad gone terribly wrong. The FedEx man, polite but wide-eyed, had me sign for the package, then literally sprinted back to the safety of his truck. Note the common theme of the robe in both anti-fashion examples. Maybe I should decree that runway designers need to elevate the style status of fluffy terrycloth robes in next year’s collections!
Rule 4: As a cancer patient, you should not be embarrassed to admit to the use of unorthodox methods to solve unexpected annoyances. I submit the example of what to do with your head after you shave it, that is, if you choose to shave off your hair prior to it falling out during chemotherapy. A week or so after you shave, some hairs will not fall out readily, won’t come out when rubbing your head in the shower, and are also not growing. They feel like little needles and can be pretty uncomfortable under a hat, scarf, wig or crown.
I presented this dilemma to my husband, ever the willing problem solver. He suggested the typical male answer to most all of life’s problems – duct tape. My first instinct was to snap back at him: “Are you crazy? It isn’t enough that I am bald? Now you want me to rip the skin off my head??” (This was a holdover from the bad behavior highlighted in Rule #1.) But I managed to hold my tongue and, after conceding that this stuff was used in wartime to patch bullet holes in helicopter blades until repairs could be made, decided that I didn’t have much to lose if I was careful. And I had to face the cold reality that none of my ideas had worked.
Per his instructions I cut a 9” length of tape, wrapped it around my palm and the top of my hand, sticky side out, then slowly and gently rolled my covered palm across my head where the needle hairs were. Sure enough, many of them came out without any pain while my skin remained intact. As I performed this exercise Ed sat in the bedroom anxiously awaiting the results. I walked out and stated ruefully, “As much as I hate to admit it, this actually works.” After a few more duct tape treatments, I progressed to my Sheltie’s pet roller for the less stubborn hairs. These two techniques got me to the point where I had no more needles and no more hairs falling out and sticking to my pillow or turban. Therefore, I order that we will no longer be embarrassed to share our unusual (okay, weird) solutions with others who might benefit.
Rule 5: Staying with the hair theme, wigs need to be cooler. I don’t mean better styling, although President’s wives must be popular /images for some wig designers because one made me look like Mamie Eisenhower while another channeled Pat Nixon. The wig I finally selected was a stunner and was comfortable enough when I bought it in mid-October. That is, until my first serious hot flashes began after I started chemotherapy. Then, all I wanted to do was strip off everything – my clothes, the wig – and do it fast. Since that kind of behavior can get you arrested out in public, I sucked it up until the flash was over. But over a period of four months I went through several packages of batteries for my personal hand fan. That sweet little device saved me from becoming bald jail bait. So forthwith, wigs will help us look terrific while containing a cool gel lining in the net cap so we can survive climate change, both personal and global, while staying on the right side of the law.
Rule 6: Steroids and adjuvant hormone therapy should not result in weight gain. Here’s another one where the drug universe really sticks it
to us. Although I didn’t have a weight problem before, once I started my second round of chemo accompanied by steroids, I packed on 13 pounds before I could bat my skimpy-eyelashed lids. It didn’t help that I was moving less because of bone pain, fatigue, and winter weather, and my steroid-induced appetite evaporated any attempts at portion control. But the appearance of my ballooning alter ego was definitely unwelcome. And, for the record, I was still bald.
As the effects of the chemo drugs faded, and the weather started to turn warmer, I began an exercise regimen to strengthen my body, doing a little bit at a time, and progressing as I felt stronger. Just about the time I started to feel like I was hitting my stride, my oncologist initiated a one pill per day hormone therapy which will continue for five years or more. One of the most common side effects is – yes, you guessed it – weight gain. You have to love the irony here. It’s not like we need help gaining weight as we mature and our metabolisms downshift after menopause. I am dutifully exercising and watching what I eat, as well as how much, and am feeling 100% better and looking fitter and firmer but really, this rule needs to happen – NOW – before I gain another ounce!
Rule 7: When you ask for the curly hair chemo, then you should get curly hair on the regrowth. I spent my entire life begrudging my two brothers their curls, while my hair was stick straight. That’s another rule that I should have taken care of long ago. (Did I mention I am the oldest, and had to put up with them both, so they owe me?)
But I digress. When I heard that many survivors’ hair grows back curly, I saw my chance. I explicitly requested the curly hair chemo mix from my oncologist, who appraised me with a puzzled look, nodded, and said vaguely, “Aha.” Now as I examine the current quarter inch regrowth that nominally qualifies as my crowning glory, there is not one curl to be seen. The hairs are baby soft and delicate, and there are many more silver representatives than before. What is that all about? But not a damn one is curly. So let’s revise this evolving rule: Curly hair chemo, if requested, means you get curly, non-gray, luxuriant tresses as your regrowth, and this goes double if you have two ungrateful brothers who have curly hair and the gall to complain about it in your presence. Now that’s a kickin’ rule!
In summary, I don’t mean to be a complainer. But if these rules were effective today, coping with breast cancer surgery and treatment could be rendered significantly more straightforward and certainly less maddening. Alas, until that time comes, we just have to hunker down and fight our way through it, day by day. To those untouched by breast cancer I say, good luck, annual mammograms all around, and keep ‘em coming! And to my brave, survivor sisters: Fight on, Warrior Queens! We can’t back down now and we can’t let the Evil Breast Cancer win!
Tana Suter is a recent cancer survivor who, fed up with illness memoirs crammed with drama and pathos, used her idle time throughout treatment to document how a serious illness muscled its way into her previously well-organized life. She is finalizing a book entitled The Menopausal Warrior Queen Slays the Evil Breast Cancer where she collects her non-medical frustrations and observations into a funny, sad and often cranky call-to-arms for warrior queens and those who love them. Her website, menopausalwarriorqueen.org will go live in May 2009. Suter lives with her husband, Ed, in the picturesque foothills of northern Virginia.