Angels and Butterflies:
A Story about Breast Cancer
by Kelly Brimhall
My mother was 44 when she died of breast cancer. She died with an elegant dignity and quiet sadness that reached deep into our souls. It was not even a year earlier that her sister had died from the same insidious disease, leaving vacant in our family two hearts, abundant and pure. It is a true genetic tragedy.
Ten years later, still reeling from the loss of my mother, I was diagnosed with breast cancer as well. I was a 36 year old, recently divorced mother of two young teens. I was independent and finding success in my new career as a counselor for troubled teens and their parents, and I had just started a new relationship with a good man.
Having found a lump under my arm while doing my monthly, self breast exam, I wasted no time in getting it checked out. I was referred to a surgeon who turned out to be the best medicine I could have asked for. He was about my age, very cute, and extremely caring. I fell in love with him instantly in a damsel-in-distress kind of way, and I attribute this school girl crush with at least part of the success of my treatment. As my understanding of the healing process matures, I realize how critical to our survival are the feelings that occupy our hearts.
The biopsy came back positive for breast cancer. I cried for about 24 hours straight. I was at work when the call came, and my very good friend, Stacie, took me home and stayed with my daughter, Courtney, and me that night. Courtney immediately joined my emotional lament. So in tune are a mother and a daughter, like an ancient choir. My son, Wil, was at his dad’s, so I called over to let him know the tragic news with the most benign voice I could muster; he was quick to get off the phone to manage his own feelings with a brave and sensitive heart. We made a bed on the floor that night for the three of us and spent a very long, misty night.
In the morning, Courtney went to school to seek out her friends for comfort and a place to clear away the heaviness of the night before. I spent the day calling my family and friends. The calls were short - no one quite knowing what to say, and no one wanting to add their fears to mine. My dad lived down the street from me and stopped by that afternoon to show his support. He was prepared to take care of me as he did my mother, or in any way that I needed, and though not in words, that was the message delivered from him on that day.
One of the hardest calls to make was to my closest friend, Kelly (yes, we have the same name.) Kelly and I had booked our second trip to Mexico for the following month - a trip we were looking forward to if it was only half as fun as the first one. When she answered the phone, I couldn’t speak as I was choking back tears. Kelly’s fears quickly peaked, and I managed to cry out, “I can’t go to Mexico!” I told her I had breast cancer, and we ended the call with inaudible words. The circle of tears in my heart grew with each phone call I made that day.
The new man in my life, GM (short for good man,) was out of town, so he heard the news from me over the phone a few days later. I had my composure by this time and was able to express, unemotionally, my desire for him to consider not being involved with me any further. Although I was very fond of the time we had spent together, I was not in love with him and would have respected his decision to distance himself from the relationship. He was clearly frightened by the diagnosis, and indicated that he would give it a lot of thought. He came to see me immediately upon his return and gave me his well thought out answer which was that he wanted to support me and be by my side. It was the support I needed - selfless and loving, and on reflection, I am struck by the abundance and power of love in the universe.
My life had been transformed. I was no longer the single, fun, looking-for-a-good-time, working mom anymore. I was a cancer patient fighting for my life, and all eyes were on me and counting on me to fight this thing and win, at least, that’s how I felt. It was especially important to me that I show my daughter and my sisters that breast cancer is not a death sentence and to take some of the fear out of it should they find themselves facing it in the future. I pulled from every aspect of my life to give me the strength to take on this mission, including from the emotional growth boarding school I was working at. There was an immense amount of healing taking place there each day. I was surrounded by it. I soaked it up, I breathed it in, and I gave it back. I was the teacher, and I was the student taking full responsibility for my life.
The real work began when I had to decide on a treatment plan. Seeing my surgeon was “delightful”, but his sense of urgency did not escape me. He wanted to surgically remove the cancer in no later that two weeks, which required me to make a possibly life or death decision in what seemed like no time at all. He gave me two choices: behind curtain number one, lumpectomy, six months of radiation and chemotherapy; behind curtain number two, mastectomy and chemotherapy. This was the standard for my kind of cancer at the time, and though chemotherapy scared the pants off me, it was still fresh in my mind that had my mom had chemotherapy immediately following her surgery, she may still be alive. Choosing a treatment plan was a very difficult and weighed on me every minute, but the process turned out to be extremely empowering, which I feel also added to the success of my treatment.
Leaving the office of Dr. Delight that day, I was elated at one prospect, and that was at saving my breast. I had so much fear - fear of dying, fear of chemo, fear of the unknown... By choosing curtain number one, the fear of losing my breast goes away. It was the first glimpse of light after the total eclipse of my soul.
Clarity was slowly returning to me. I realized the enormity of my responsibility to choose the right treatment. Having made my illness public, I started networking. This gave me plenty of resources and personal experiences to pull from. I became numb to the inevitable response “Oh, my so-and-so died from breast cancer.” It turns out almost everyone knows someone who died of breast cancer. It didn’t bother me. I was on a mission to save my life, and I had to put fears aside in order to come up with the right solutions, and when I made my decision, I never looked back.
I decided to take door number four. In my research, I found many women who chose to remove both their breast and have breast reconstruction in the same surgery. This was done primarily by younger women with a very high family history of breast cancer. The logic behind this was simple for me - I would never have to worry about breast cancer again. (Technically, this may not be true because I’m told that it’s nearly impossible to remove every breast cell from the body.) So, I made the decision that I felt gave me the best chance for survival long term, and sitting here ten years later, I can’t say it was wrong, what I can say, though, is it wasn’t easy.
Dr. Delight was very supportive of my decision. I’m not sure if he honestly felt it to be the best treatment for me, or if he was empowering me in my decision. Either way, the decision had been made, the date had been set, and I just checked off the first marathon of this great race.
The date was set for April 24th, just three days after my 37th birthday. My girlfriends, Kelly and Etta, came from California to be with me and made my birthday a joyous celebration. I was a princess floating on a cloud all day long, and the tears flowed, as well as the wine, but only from the joy and the laughter this time. My family and friends surrounded me, and the love and support I received from everyone was cheerful and warm like the winter sun, and fear like tiny ice crystals on the window, just melted away.
Fear, however, soon returned with a hard frost, and not just for me. The day before my surgery, I went to see Dr. Delight to get the particulars for the following day and some valium. Kelly and Etta accompanied me, and so did my sister, Staci (another Staci). I was feeling very anxious but putting up a strong front. Staci’s feelings, however, were very close to the surface, and she struggled with them most of the day. She was much younger than I when we lost our mother, and I think she relived and mourned that loss a lot during this time.
My anxiety grew exponentially as the day passed into night. The shelter provided me by my friends and family was breaking away. I felt cold from the exposure of reality. I am eternally grateful for the loving, safe place they made for me during this time, but their love could not protect me any longer. GM stayed with me that night, but not even valium offered me, or anyone, any sleep.
It was a 30 minute drive to the hospital, and I was scheduled to be there at 8 a.m. As anyone knows who’s been to a hospital, it’s a hurry up and wait process, but I had a very nice, spacious room. GM, Kelly, Etta, my sisters, Staci and Valerie, and my dad and his wife were all present. Wil and Courtney were not at the hospital and, I think, protected from what could have been a frightening experience for them.
The morning moved along like a butterfly social gathering, and adding to the beautiful garden, cards and flowers started pouring in. I was participating pretty well between needles and breathing treatments, though emotionally, I was fairly detached - until they came for me. I was wheeled down the hall with my butterflies in tow, when the eruption occurred. Every cell in my body screamed out in fear, and the tears violently poured down my face. Then, one by one, each butterflies lit on me one last time with their love and kisses which I took with me into a deep sleep.
There is no way to describe the pain I had waking up from surgery. I thought I had a fairly high threshold, but that is not true. I couldn't move. At one point it was too painful to breath, so I basically stopped, and my vitals dropped pretty low. There seemed to be a problem with my pain management, and I remember a nurse coming in the middle of the night to put me on a scale to get my exact weight. It was very difficult and painful, but it hurt way too much to cry. I was originally scheduled to leave the hospital after two days, and pain or no pain, I was determined to go home. Dr. Delight had left town after my surgery, so I had a different doctor checking on me, and he indicated that he would not release me due to the level of pain. I was very disappointed and started thinking about all the people I loved at home waiting for me and how much I wanted to be with them. I felt my spirit coming back to me instantly. On the third day, I felt stronger. The doctor came in and suggested that I stay one more day. I showed him how I could sit up on my own, which I wasn't able to do the day before. He reluctantly agreed, and I went home that afternoon.
I slept the majority of time because of the pain medication, and I was very fuzzy. A lot of people came and went throughout the day, and I had a secret pal that left unbelievably generous gifts on my doorstep every other day. (I found out months later that it was my dad’s wife, Judy. What a sweet heart!) I remember Wil coming, and I could sense his relief to see that his mom was a survivor. I thought it was poignant that a couple days later, my first outing would be to take him to the hospital because he had bit his tongue and had to have stitches. I also remember Etta helping me wash my hair in the shower and Kelly helping me with my drain tubes. Courtney was with me in the evenings, and she was the rock I clung to as my brain whirled. (She doesn’t know this because I never thought of it until now, but her grandmother was solid as a rock as well.) GM stayed with me at night in complete devotion. It was the outpouring of friends and family that kept me fighting, but I wanted my life back, and soon.
I was home a week after surgery before I returned to work on a part-time basis, which was pushing it. I was off the pain medication during the day, so I could function, but driving was a challenge. I couldn’t move my upper arms away from my side, so I drove with my elbows tight to my waist. I don’t recommend this. It was important to me that I get back to normalcy as soon as possible. So, white as a ghost and strung out on pain killers, I showed up for work with my flat chest. I saw no reason to hide it. Everyone I knew at work knew I had the surgery, and those who didn’t know, soon did. I have never been less interested in what my body looked like in my whole life. I was alive!
Reconstruction was more of a process than I had anticipated. I wasn’t a candidate for the trans-flap procedure because I didn’t have enough stomach tissue, so that left me with tissue expanders, which were inserted under the muscles in my chest at the time of my surgery. These were basically deflated implants that were then filled each week with fluid to stretch the skin. This process began about six weeks after surgery to give the sutures time to heal. It was more uncomfortable than I expected, but I was very happy to have the silhouette I always wanted. The expanders were replaced with permanent implants once I was done with chemotherapy, about five months later.
The physical part of losing my breasts turned out to be the easy part. Yes, the pain was unbearable at times, but four months after my surgery, I had nearly no physical pain, and I had bigger, firmer breasts than I could have ever dreamed of. However, the emotional challenges of losing my breasts cut much deeper than any scalpel. The void on my chest mirrored the void left by my mother’s death. If facing fear and pain were not enough, I now had to deal with loss as well. Being in a State of Grace during much of this time was a big help, and the longing to feel my breasts haunts me less frequently each year. Transcending the feelings of emptiness and shame is done purposefully and with diligence. I do not hide in self-pity, and from my own heart, my cup is filled.
It was one year after my breast cancer surgery that my reconstruction was complete. The final step was surgery to construct the nipples, which was not that successful, and I gave up on the tattooing of the areola. Because the skin is stretched so thin, these procedures turn out less than satisfactory, but I am happy how I look. I am not my breasts; What I am comes from within.
Whereas reconstruction was a painful process, chemotherapy was a fearful one. Two weeks after the original surgery, I was off to see an oncologist. He was a quiet, gentle soul, and in his eyes, I saw much sadness. I could only imagine the daily toll in the life of an oncologist. I liked him very much. He was a rationalist, like me, and we were able to communicate with regards to my treatment easily and effectively. He did little to address my fears, but I didn’t need him for that, I needed him to save my life.
The first thing Dr. Sadeyes did was pull out a chart to determine my chance of survival. I knew I was a stage three and that I had three out of thirteen lymph nodes test positive. I was also told that I had a very fast growing cancer - a nine on a scale of one to ten, but I had no sense of what that meant in terms of survival. So we put the information into the chart: this kind of cancer at this stage in this row, with this test result down this column, and the number is... The formula gave me 20% chance to survive five years. Dr. Sadeyes looked at me with his matter-of-fact, sad eyes, and my heart leaped. I was ecstatic! I said to him, “20%, I can do that.” At that moment, 20% seemed like the biggest number in the world, and I knew I would survive because every cell in my body wanted it.
Unfortunately, to survive I needed to go through the chemotherapy, which entailed another decision to make. He gave me two options: behind curtain number one, take the standard, proven combination of chemicals, or behind curtain number two, join a blind study group in which I would either receive the standard, proven combination or the new chemical cocktail which was much stronger. He gave me the required speech about testing new chemo drugs and helping out women who would be facing breast cancer in the future. I had one week to decide.
I started processing immediately. I decided right away that it was important that I have ownership of the treatment I receive rather than leave it to chance; however, my instincts were telling me that I wanted to try the new, more powerful drug. I called Dr. Sadeyes and told him I wanted door number four. Again, did he agree, or was he empowering my decision, I’m not sure, but we agreed over the phone to go with the new chemo treatment.
I was back to work full-time with an arrangement to take off on Friday every four to six weeks for my chemotherapy treatments. I felt that the chances would be good that I would be well enough to be back to work on the following Mondays. My supervisor was very accommodating and generous. I was given all the sick days I needed to cover my treatment. It was such a nurturing environment, and the parents that I worked with were also supportive. Having sent their at-risk child to us from all over the world, it was my job to communicated with them about their child’s progress and to educate them about the program. It was a great job helping a parent help their child, and I had built great relationships with many of the them - one woman in particular who was from Texas. As I was relating to Ms. Texas the decision I made regarding chemotherapy, she informed me that she, personally, knew the individual who developed this new chemo I was about to put into my veins. She asked me if I would talk to her, and I said I would. A woman called me the following day and introduced herself as the maker of this very powerful chemo drug. She asked me some of the particulars of my cancer, and we talked for about half an hour. She then told me straight out - this is not right for you - it’s way too strong. Living life day by day, affords an infinite number of opportunities for it to be saved. One phone call could be one such opportunity.
Dr. Sadeyes seemed less than impressed when I explained to him the fortuitous phone call with the maker of this new chemo and how I was not going to take it. I don’t know if it was threatening to him that I, in a sense, went over his head; or if he was disappointed with the fact that I was going to use the boring, proven standard treatment; or if he was just annoyed because I changed my mind, which I’m sure created a lot of paperwork for him. Regardless, I was fully empowered by my decision, and I was set up with my first chemotherapy treatment that day.
Being wrapped up in deciding which chemicals to systematically poison myself with, did nothing to ease the fear of what was about to take place, however. There was the fear of the unknown: would I get sick, how sick would I get, would there be permanent damage to my heart, brain, liver and kidneys? And there was the fear of the known: my hair is going to fall out, and I’m going to be bald - more fear, more pain, more loss.
I was led to the back of the Cancer Institute where it opened up to a big room with nice windows and nice light. There were a series of reclining chairs and televisions by the window, and a row of beds along one wall with “privacy” curtains. I was seated in one of the recliners, and the first of three bags of chemicals began dripping through a port that had been surgically implanted into my chest, and into my artery. I closed my eyes and let the golden fluid flow into my bloodstream. I taught visualization to my students and knew this was the perfect venue for it. I imagined all diseased cells in my body suffocating in the orange elixir.
As planned, I was back to work on Monday. It took all the anti-nausea medication they gave me to hold back the nausea, but at this point, I felt like I was skating through it. I was scheduled for five treatments all together that would take place three to four weeks apart, depending on my red blood cell count. It turns out, that there are perfectly healthy cells in the body that are also susceptible to the intoxicating, orange liqueur. Three of the top four lushes (cancer cells being number one,) red blood cells, cells that line the digestive tract, and hair cells. Three weeks after my first treatment, my long, blond, virgin hair fell out.
The fear I had of losing my hair turned out to be completely warranted; it was a traumatic and harrowing experience, and I thought the six months of being bald would never end. However, I had a beautiful and growing collection of hats and scarves, and one silly wig. I told myself that the only way to get through this is to have fun with it, so I did. One day I would wear a beautiful wide brimmed hat with silk roses, and the next day I would wear a pink,crocheted cap or a Panama hat. My hats were always accessorised with a matching scarf. The scarf works with the hat to prevent you from looking like a bald person wearing a hat. It’s really quite elegant.
With each treatment, I felt more wear and tear. It became unbearable to face the third, then the fourth, treatment. By my fourth treatment, I missed Monday at work. The fatigue was becoming a real problem for me, and the nausea was getting harder to manage, but the biggest problem for me was my memory. I’d forget where I parked my car or what I had for breakfast. Fortunately, the blood tests that I had each week before my next treatments showed improvement in all markers for cancer, and my red blood cells were hanging in there. However, when I went in for my fifth, and what was to be my final treatment, Dr. Sadeyes gave me the results from that week’s blood test. All markers were up, not down. My spirit instantly deflated, I couldn’t even cry. Dr. Sadeyes was very sympathetic to my disappointment; he seemed disappointed too. I thought of myself as his star patient because he looked happier in his eyes with my progress, and he really loved my hats. Now I was failing; I would be like the other cancer patients at the Cancer Institute getting my treatments in one of the beds behind a privacy curtain.
Dr. Sadeyes suggested that I let him “hit me hard.” Already feeling like I had been “hit hard” on the last treatment, I knew exactly what he meant. I agreed, and an extra bottle of the orange elixir hung above my head that day.
I missed Monday and Tuesday of work that week. The fatigue and nausea were a little rougher this time. My short-term memory problem was beginning to interfere with my work, and my spirit was badly shaken. I could not face more chemotherapy, not emotionally, and certainly not physically. I put on the best face I could for my friends and family keeping my most desperate feelings to myself.
I was given the opportunity to release some of my fears at work one day, and I took it. It was a morning meeting with some of my students and another counselor to check in with everyone to see what the hot spots of the day might be. One of the students ask me how I was doing. As a mentor, one of my jobs was to demonstrate healthy expression of honest emotion - this was my opening. It was healing, and the students were great. They were so caring and gentle with me, I think it was good for them as well.
I somehow managed to get through the month to my next appointment with Dr Sadeyes. I was oddly ready for the day. I wore a rather short, well fitting dress that was a beautiful green/blue/black plaid tweed. On my head was a black, short-brimmed cotton hat with matching scarf underneath. Whatever the news, on that day, I looked good, and I felt good.
Dr. Sadeyes walked in with a wonderful, happy smile on his face. I think he wanted to hug me when he showed me the results from my blood work. Markers all down - lower than low! I was giddy; he was nearly giddy. I didn’t feel like crying, though. What I felt was every cell in my body jump into life. I was instantly projected into a State of Grace. I said, “what now?” He said, “You're done. Don’t come back.” I floated out of the Cancer Institute that day - cancer free. I did it for myself, for my daughter, and for all my sisters.
**Mothers show the way for their daughters all paths worth taking, and those which are not.**