Amy's Health Blog

February 8th — I’m pink. Not sunburnt yet, but definitely showing some color. 27 more days ahead of me. I’ve also realized that there is one spot above my left breast between my port and my implant that tingles in a funny bone sort of way when I touch it. It’s almost referred pain in that some nerve under my arm to the left of my breast reacts when I touch this spot. I guess I hadn’t realized it before because I wasn’t massaging anti-burn ointment into my skin three times a day before radiation. Apparently, the more the skin around the breasts is touched after a mastectomy, the better for a return to normal sensation. The nerves get correctly rerouted if surgery messed them up is the thinking although a girlfriend made the snide comment that it was probably a male doctor who came up with the theory. I think she implied the doctor’s prescription for nerve rerouting breast massage was bound to involve a scotch-and-soda, soft music and lacy lingerie. While I feel like a Frankenstein with my port and colored dots and Xs, my friends continue to have a field day with my new figure. Is it afternoon already? Time for more calendula ointment.

February 7th — A writer friend of mine made some profound remarks to my comment that my blogs were boring. He said he thinks everybody has profound thoughts and feelings, but educated people are more inclined to notice them and verbose individuals have an easier time writing them down. He continued, “also, I think you assume that other people are as open about their fears and suffering as you are. Many people are afraid to lose face — even to their doctor. You’d be surprised at what small details in your descriptions other people would find interesting. I remember some famous writer saying that the hardest part about writing is recognizing that your life story is not as boring as it appears to you and not as interesting as you’d wish it to be.” Deep deep comments to my way of thinking. I can’t imagine someone not being open about fear and suffering, especially when facing an ugly battle with an aggressive life-threatening disease. Yet another friend said that she finds my blogs more upbeat than I am in real life. Do I want to be more positive and can alter my writing even if I can’t change my daily persona? I know there are good treatments and advanced research and new medicines to help combat my illness, but the fact is that I am more likely to die of breast cancer than any other cause. Greg confronted one of these moments of mortality by saying, “then let’s try to make that as far in the future as possible. If you’re 90 and die of breast cancer, is that such a bad thing?” I loved the line about everyone’s lifestory not being as boring as it seems nor as interesting as we’d like. Isn’t that true of everyone’s life? I wonder if people like Madonna or Winston Churchill or Barack Obama consider their lives boring and interesting in the same degrees as we ordinary folks. Maybe they are just too busy getting stuff done in life to think much about it.

February 5th — Does this start my downhill slide? Day 10 of radiation and I don’t have any obvious skin changes or other side effects, aside from the underarm stretching from my unusual daily position on the treatment table. I saw Dr. K today to discuss my estrogen levels since I got my period back after seven months of chemo-induced amenorrhea. He recommended chemically blocking my estrogen-production with daily Tamoxifen pills and a monthly shot of Zoladex. There are clinical trials underway to more closely examine the longterm cancer-fighting properties of suppressing estrogen in premenopausal women with triple positive tumors like mine. So, while the clinical data is still controversial, he recommends it. I’ve wanted to suppress my estrogen ever since hearing I had hormone-sensitive tumors, even going so far as wanting to have my ovaries removed, so Dr. K didn’t have to convince me to take this route. He said possible negative consequences are osteoporosis and hot flashes or other menopausal symptoms. I immediately replied, “oh great, am I’m going to lose my sex drive now?” Dr. K laughed at my frankness and we had a good conversation about sex and cancer and hormones and tamoxifen. I’m not really worried. Isn’t it mainly attitude? I think Dr. K was happy to see the old upbeat Amy back since our last few weepy visits. When he first entered the exam room and I smiled at him, he said, “you told me this would happen, didn’t you? You told me you would rally.” We talked a bit about how a life-threatening illness breaks down the superficiality of people and reveals the inner core: is it steel or is it butter? I blithely told him my inner core seems to be made more of butter than steel if my reaction to radiation was any indication. Dr. K wasn’t too fooled by my attempt at self-deprecation. He smiled and said, “really? you think your core is butter and not steel?” I met his calling-you-on-your-bullshit gaze and returned his smile as I said, “no, my core is not butter.”

February 4th — Radiation, again. Thursday must be my doctor visit days because I saw Dr. N today after the treatment. I was back to my usual cheery chipper self, which I’m not sure this doc has seen, so it was a pleasant visit. He said a sentence which I think would be enough to convince most teenage boys to study their sciences so they could grow up to become radiation oncologists, “so, tell me about your breasts.” Isn’t that priceless? My skin is doing fine and the doc showed me the mapping CT pics of my body and the radiation fields they are targeting. I found it all fascinating. As the second opinion radiation doc said, “it’s all very interesting when it’s happening to someone else. When it happens to you, it can be downright scary.” Today I found it more interesting than scary. When we talked about the length of time some of the fields are, he mentioned that you can think about breasts being shaped more or less like cones. The triangle is narrower at the top than at the bottom so that’s why some of the zaps are shorter than others. On another note, my estrogen levels must be rebounding from the chemo. I called my regular oncologist with the news because longterm outcomes aren’t as favorable for folks who don’t stay menopausal after chemo. Sigh. Damn estrogen.

February 3rd — Are you bored with my radiation blogs yet? I am and I have 30 more to go. Sigh. Over the weekend, the surgical tape came off that had my center X on it that was originally used to do my CT scan a week before I began radiation treatment. I was told to make sure to keep those Xs on my body until I began radiation when the radiation techs could remark me daily. Since the tech had put the tape on while the ink was still wet, the ink stuck to the tape instead of my skin. I didn’t say anything then because heaven knows these folks have done this thousands of times before and I’m not about to tell them how to do their job, but it didn’t seem like the best idea at the time. So, the tape comes off and the X comes off with it instead of leaving a faint mark on my skin. The radiation techs freak out a bit and tell me I may have to have my mapping CT redone and the dosimetrist and radiation oncologist will have to make a new plan and I’ll have to begin this hell all over again. Really? I know I only made it through calculus and any conversation involving higher math will likely lose me, but I have multiple marks elsewhere on my body, can’t they triangulate and figure this out? Again, I say nothing because this isn’t my job but I lay still and expect the doctor to come in and chastise me at any minute. Sigh. Instead, the radiation techs begin my radiation that day so obviously they weren’t too worried about not hitting the targets. At the end of the treatment, they came in and remarked the center X. When I asked them about that, they explained that they backed through my treatment using my other Xs to basically triangulate the position. Then, they proceeded to put clear surgical tape ontop of the wet permanent marker ink. My kids play with markers and that ink stays on them for weeks despite daily baths and much soapy scrubbing. Maybe the radiation folks need to invest in the cheap non-washable kid markers for their patients.

February 2nd — I spent two hours at radiation today because when I first arrived, a part of the machine was broken. I spent an hour in the morning waiting. And then I got to come back in the afternoon to actually have my treatment. The waiting room at my regular timeslot was backed up because the machine broke yesterday and folks who couldn’t get treatment then were waiting this morning. After waiting an hour, a tech came out and said they needed to get their engineer into the room so would have to take a 45 minute break from treatment. Could we wait? There were already three people ahead of me at that point. When I said I would prefer to reschedule, they booked me at 1 p.m. Life, I have a small business we just started. I don’t have time for this. Cancer is very inconvenient. I made some phone calls and rearranged childcare duties so I could still make my Girl Scout cooking class that afternoon and went on with my day. Before my treatment, the techs took more x-rays of me. As I’m being zapped, I thought about how all my life I’ve avoided x-rays. When I’d see the dentist for my annual check-up and the hygienist wanted to take x-rays because it had been three years since my last set, I would ask if it were really necessary since I don’t have cavities. If the dentist thought the x-rays were prudent, I would have done it, but didn’t want random x-rays just because it had been three years. And in the last week, I’m sure I’ve been exposed to far more dangerous radiation than another person’s lifetime of dental x-rays. It just points out how scary my disease is that this treatment is important enough in prolonging my life that the benefits outweigh the risks. Any wonder I cry driving to radiation each morning?

February 1st — I still dislike radiation but maybe I don’t hate it. There are some things worse than cancer that can happen to you in this world. In fact, there are some things worse than illness that can happen. The sister of a fellow cancer patient who is undergoing radiation is a very friendly and warm older black lady. She’s always chatty and sweet while she waits for her sister to finish her treatment. She’s also very religious and blesses everyone on a daily basis. I turn away no blessings. Today she began talking about how she and her sister were raised by an abusive alcoholic mom who used to beat them. That brought the two sisters closer because they were always defending each other from their mom. She was actually telling this story to the woman who has radiation after me but I eavesdropped because it’s a small waiting room. I was surprised enough by that revelation but wasn’t prepared for what I heard next. This woman continued her story but I was only half-listening because I was reading about Angelina’s affair with one of her handsome language coaches (involving black waterproof sheets and sex toys according to the Waldorf-Astoria maid who had to clean up after them. All while Brad was in the Hamptons with the kids.) I overhead this woman saying that her seven year old daughter accidentally got one of her husband’s hunting rifles back in the early 70s and shot and killed her five year old sister. I gasped and involuntarily hugged the storyteller when I heard that part of the story. She said the girl has always had guilt about that incident and the mom will forever blame herself until she leaves this earth. She said she thinks about that incident every day and finally had to turn it all over to Jesus so she wouldn’t go crazy. Hearing that story before I went into radiation made my trials seem somehow easier to bear.

January 30th — I said I didn’t want permanent tattoos so I get multi-colored Xs and dots all over my chest each day. I suspect some of these would be there even with the radiation tattoos since the techs mark the fields so they don’t get “hot spots” or double doses of radiation on overlapping fields on my body. Since I can’t look down when the techs are drawing on me each day, I ask, “what color are the dots today?” I have pink, red, green and blue for the past four days. A positive note is that I get that yummy high marker smell when they are drawing on me. You can also see my chest portacatheter or “port” where the chemo is infused into my body above my left breast. I’m a Frankenstein with my port and colored marks. Sigh. Enjoy the pics!

January 29th — Happy Birthday Mom!

Radiation is still awful and today my shoulders and arms began aching terribly during the procedure. I don’t know if it was the positioning or the fact that the techs had to take extra x-rays today or just the cumulative effect of five days’ worth of arm stretching. I counted the actual radioactive zaps and I get 13. Some of them are with the machine in the same position so I don’t know if that counts as a different field or not. Since the breath holds are no longer than 30 seconds each time, maybe I’m supposed to get a full minute’s dose of radiation on a few fields and the techs break it down into two different zaps so I can catch my breath. Doesn’t really matter. I’m already turning slightly pink as if I have a slight sunburn so am busily applying my salves several times a day. Thank God for the weekend when I get a break. I chatted some more with the woman who gets radiation after me who said she’s anal retentive and always shows up extra early for her appointment. She’s had breast cancer three times and this time it has metastacized to her bones. She said matter-of-factly that this time the cancer will probably kill her, but she’s made her peace with that since we all live day to day, not knowing when our number is up. Maybe something else will get her before the cancer does. She has three grown sons and five grandchildren, with the oldest being 11 and the youngest being 18 months old. I had some interesting emotions. Was I envious of this woman with metastacized breast cancer because she had grown children and knew her grandchildren? I told her I wanted 16 years to get my youngest out of college and every year after that was a gift. Actually, isn’t every day a gift? Do we live it as such? Do I? It was a bit surreal having a that conversation about cancer and death. Neither one of us cried during that conversation, and I think that’s what struck me the most. How casually cancer patients can discuss their own mortality.

January 28th — For some reason, radiation wasn’t as grueling today. I saw my radiation oncologist who was kind and compassionate and understood my anxiety. I still haven’t made friends with the scary machine, but my uncle gave me permission to spit at the machine as it whirls around me. That comment brought a smile to my face so I didn’t cry all the way to the oncology building today. I told some folks I would relate a funny thing that happened yesterday while waiting for my turn under the radiation machine if I got some of my sense of humor back. There were four women (including me) waiting for the machine yesterday. I was trying to figure out the schedule. One woman had a 9:10 appointment, I was at 9:15 and another woman said she had a 9:30 appointment. Then, the fourth woman said, “I have a 9:45 appointment, but I’m anal.” I was a bit taken aback by the comment, but thought I reveal everything about my breast cancer, so maybe I would be just as open about another type of cancer. Then she added, “…so I show up early for everything.” Oh, she meant a different kind of anal.