Archive of a Breast Cancer Survivor

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Archive of a Breast Cancer Survivor Adriene Hughes

Archive of a Breast Cancer Survivor © 2006 Adriene Hughes Text and Photography by Adriene Hughes This book was made with the help of Megan O’Connor whose impeccable sense of style gave this book its clean and elegant design. Additional credit goes to Lara Frankena and Donna Hung for proof-reading the text. Proceeds from the sale of this book will be donated to The American Cancer Society. Special thanks to Darren Davis for his unforgettable image on page 41. It was truly memorable to not only have you be the person to shave my head, but also document the aftermath. Other contributing photographers are Karen Byrne and Reiko Afshar, who at my side, continued the process of documenting the journey to survivorship when I was not able to do so myself. Also many thanks to the staff and medical community for their patience with my constant camera in hand documentation of every step and every needle, tube, chemical, and weary smile from my face to theirs. Last but not least, thank you John Zawierucha for the diva-portrait on page 100. I could not look so fabulous without you. This book is dedicated to my parents who did not treat me as a cancer victim, but rather a cancer survivor from the moment I learned of my diagnosis. Their constant care and support was more than invaluable; it was a soulful necessity. Printed on demand by

Author’s Note I was diagnosed with breast cancer on November 19, 2004, six days before Thanksgiving. Two weeks later I had my breast removed and immediately reconstructed with a temporary implant. At the time I wasn’t sure what those two weeks represented but I began to document each and every appointment: the barium drink, the chest x-ray, the bone scan, the cancer surgeon, the oncologist, the plastic surgeon, and even the signing of the surgery papers. Every technician, doctor, nurse and patient in the waiting room seemed more than willing to be a part of the documentation process. Three days before the mastectomy I finally had the time to post an image of “Mr. Spots,” who marked the spot on my breast during the MRI. Mr. Spots denoted where my cancer lived. The archive you are about to read is a documentation of the process of survivorship. Taking photographs and journaling my thoughts allowed me to step back and observe myself during the journey to recovery. Sometimes the expression of cancer became too difficult to comprehend, if not for myself, definitely for those who loved and cared for me. Documenting those thoughts and feelings allowed me a place to exist without being embedded in the difficulty of the disease. By having a cyber-home in which to journal my experiences, I found that I wrote not only for myself, but for others as well. I documented an expression of a particular experience that so many could, and still can, understand empathetically. This book is by-product of that time. It has become the archive of my breast cancer survivorship. It is the end of a beginning, and the beginning of a new me—survivor and reconstructed self—who shares these images and words so that my history can be more than a personal reminder. Adriene Hughes 2006

Forward Upon first encountering Adriene’s web journal I was awestruck as to how closely it paralleled the trials and tribulations that my patients with breast cancer report on a daily basis. As a plastic surgeon who specializes in breast reconstruction, I have not only dealt with the physical component of breast cancer, but have also gained a greater understanding of the psychological aspects of what a woman experiences when being diagnosed with, and under-going treatments for, breast cancer. A great deal of professional satisfaction is attained through patients allowing me to be an integral part of their world during an unexpected and difficult period in their lives. Once a patient has healed from the surgical portion of their treatment, they then commence on a long and arduous journey of treatments to further eradicate the disease that has inflicted itself on their body and soul. Not uncommonly, I will meet women who feel as if they are made numb by the recent diagnosis laid on their shoulders. With this mind-set, they report a wish that the surgery had been done yesterday. Then, it is during the post-operative phase that women will have more time to think and reflect upon what has happened and which road they will pursue towards recovery. Several times a day patients will relate their encounters with a myriad of people now involved with their treatment; from the decision as to which oncologist to select (each one offering a different chemotherapy protocol), whether or not to undergo post-mastectomy radiation therapy, or where to get the most natural appearing wig­—these and other topics are frequently discussed during routine follow-up visits. Often the examination of the surgical site(s) will only take a moment or two, but rather the majority of the visit is spent focusing on the other

components of their treatment. Even with this somewhat enlightened view­point, I can only vicariously understand these issues as I am not a woman nor do I have breast cancer. However, the knowledge gained from prior patients enables me to relay previously shared experiences to let women with breast cancer know that they are not alone. This is where the journal that follows is most pertinent. A void has been filled by the author’s daily log tracking her individual battle with breast cancer. Taken by itself, one may surmise that her experiences are unique. However, when other women with breast cancer have read her entries all I hear them say is “Me too.” Nearly every one of my patients have been referred to the journal, as there is obvious comfort and relief derived from knowing that someone else has felt the same way they do. The written entries are powerful in themselves. The complementary photographs often create a greater impact. The emotion derived from a single photo of the chemotherapy room could not have been captured in words alone. The similarities between what a woman would relate in the office to an actual journal entry are staggering. The only difference is that the author has been able to succinctly put it down on paper. Whether it is the pain associated with surgery, the discomfort accredited to chemotherapy, the emotional distress of losing one’s hair, the self-doubt of feeling feminine or the uncertainty of what the future holds in store—all of this is touched upon in the following book.

The most poignant aspect of this work is that the reader witnesses a metamorphosis in the psychological makeup of a woman who is now a breast cancer survivor. This is not a change that was asked for, but the result is one of personal growth and development of the inner strength present in each of us. This book should be made available to every woman (and their families) who has been diagnosed with breast cancer. If it serves no other purpose than to have them say, “I am not alone,� and enables them to draw strength from that, then it will have been worthwhile for them to read.  Douglas L. Forman, M.D., F.A.C.S.

Archive Mr. Spots Marked the Spot Injection of Radioactive Dye In Preparation of Surgery Lovely as a Ghost My Last Menses The Surgery Quantum Mechanics Anesthesia Calling Welcome 2005 Cutting of the Hair First Day of Chemo The Injection of Chemo Metallic in My Mouth Red Meat Female Identity THX 1138 Two Down, Six to Go Time Will Tell All Third Application Happy Valentine’s Day Visiting the Oncologist Sweaty Little Balls Interfere Peso the Sleep Assistant Happy Easter Golden Statue

10 12 14 16 18 20 22 24 26 28 30 32 34 36 38 40 42 44 46 48 50 52 54 56 58 60

Postponed Floribunda Last Chemo Blond at Last Returning to Ballet Radiate Even at the Park Can’t Explain the Feeling All for a Reason Hair from the Past A Trip to Hawaii One Year Ago Today Making Strides An Examination with the Oncologist My Yearly Mammogram Anniversary When the Journey Began Reconstruction In the Smallest of Openings Grandeur

62 64 66 68 70 72 74 76 78 80 82 84 86 88 90 92 94 96 98 100

12.01.04 Mr. Spots Marked the Spot on My Breast During the MRI I have been diagnosed with breast cancer. November 19, 2004. The news came over the phone, clean and simple. Not much more to know other than a tumor exists and it has to be taken out to save my life. Saturday I had an MRI to determine the size of the mass. It was a long and tedious procedure. Dye was injected into my right arm while I lay face down, perfectly still, as the cool fluid made its way to the source. The room was cold and held nothing but the big mass of machinery that cupped me while the hum and whirl of perfection rotated around the sun of my being. Mastectomy scheduled for Friday, December 3rd.


12.02.04 Injection of Radioactive Dye for Bone Scan It is the day before the scheduled surgery and I am being sent from doctor to doctor to have tests to determine if the cancer lives in any other part of my body. I feel optimistic, rather elated to an extent. Perhaps it is my naive state that keeps me from breaking down and feeling sorry for myself. It’s as if I am living in a bubble of uncertainty, and ignorance of things to come. The true test lays ahead in a fog of bravado—a road I have yet, in my adult life, to walk. I am simply a child in an adult body waiting to be born through the challenges of surgery and chemo. To be born. To become. To be a survivor.


12.03.04 In Preparation for Surgery

Dr. Michael Bouvet, Oncology Surgeon. We were in the process of signing my surgery papers.


Dr. James Chao, Plastics Man. We are reviewing implants that would be used directly after the mastectomy removal.

12.15.04 Lovely as a Ghost This is an image of a bone scan to determine if cancer had moved into my bloodstream and deposited itself into my skeletal system. I am very fortunate as none was found. The mastectomy has been performed and I am doing well. The surgeons tell me I am a poster child for a quick recovery. No bruising or marks. My temporary reconstructed breast is very interesting and odd. It sits high on my chest, nothing like a real breast. A diagnosis of the tumor and lymph nodes has been determined: Stage 2 Cancer—the first lymph node was found to have cancer (1 out of 12). In other words, great prognosis. I will begin chemotherapy 01.06.05.


12.16.04 My Last Menses I started menstruating this morning. Every woman tends to dread that monthly ritual, the collection of tissue and blood found like a dark blooming rose in the folds of our underwear. The monthly visitation should not come as a surprise, but it does. And like other mornings this morning I cursed the stain in the beautiful pair of underwear­—sheer pink with swiss dots, and I quickly washed them to lesson the severity of the stain. After I was done I had a moment. A swift moment. It was like a bird passing before me—blurred in its flight home. I realized at that very moment the ritual which I have experienced since the age of 13 is coming to a close. Because of the chemotherapy my body will be forced into early menopause. This will be my last menstrual experience. Then I started to cry. I cried. I cried to grieve for my lost blood, the very thing that I have come to understand as a part of my being. For women menstruating is a ritual much like the brushing of our hair or the cleaning of our teeth. This extermination is not fading sweetly. I will not be given the chance to experience the grace and badge of maturing beauty towards another level of womanhood. Rather the door is being shut fast. The uncontrollable tears. And I continued to cry because I did not realize how difficult it would be to know that the blood which flows through the doorway of all my love will no longer be. With ringing hands, I grieve. I cannot help it. My wish for today: may the grace of my last passage be beautiful with the pangs and glory of all that I have known and will continue to know within the spirit of my dancing soul.


12.20.04 The Surgery It was the morning of surgery. Lying in my surgical bed, the kind nurse inserted a needle in my arm and secured it with tape. I was in a compartmentalized ward sectioned off by baby blue curtains. There were about fifteen beds full of people waiting for their surgeries. I could hear the faint mumbled conversation of the woman next to me, her family surrounding her with somber affirmations. I could only imagine them nodding their heads like the faithful should. Soon the anesthesiologist came into my curtained room and asked me how I felt: Was I nervous? Would I prefer a calming drug? I felt none of it, that nervousness. I had no need to mumble affirmations into some accepting ear. I said no to their drugs but they gave it to me anyway. They stayed with me like precious statues and lifted the metal railings on the side of my bed to cart me away. And that is the last thing I remember. There was only the memory of nothingness while men in translucent gloves opened up my chest and took out the devil—the one-inch devil, screaming round in its determined fate kicking like some spoiled child who never wanted to leave home.


12.23.04 Quantum Mechanics “X” marked the spot where the devil lived. The breast surgeon signed in purple ink the absolute truth. How else would the elegant universe spin in delight with gravity, quantum fluctuations and strings of vibrational filaments if this were not the case? Black holes are lovely things: they suck dark matter into the smallest compressed spot of light so it will not be alone. The surgeon knew this. That is why he followed my dark spot—to the bitter core. To save my life. So I would not be alone in a compressed memory that only I could finger sweetly, stirred well, like a good cup of cocoa.

Breast surgeon’s signature. Ÿ


Elliptical marking becoming patch for nipple. 타

Latimmus muscle removed, wrapped under armpit and placed across chest. 타

12.27.04 Anesthesia Calling When one thinks of coming out of an anesthetic sleep one would suspect it would be like driving through a thick fog on a dark road to come out the other end towards a light that would lead you home safely. But that is a lie. Coming out of anesthesia is nothing of the sort. I remember some movement and a clunk. I remember voices thicker than ether. I remember myself gagging and dry heaving and thinking that my insides where coming out, but nothing came out. Just the empty air of my own body rising and falling. Then that woozy ether voice said, “She will be fine now.” Fine. She will be fine? She will pull back her gown and inspect the missing breast inflated by some temporary balloon. Fine. Adj. 1: superior to the average; “in fine spirits”; “a fine student”; “made good grades”; “morale was good”; “had good weather for the parade”. She is more than fine. In days she will be ready for the parade, with her beautiful feathered hat, lovely in a pink dress with shoes anyone would envy? Fine. Really.


01.01.05 Welcome 2005 I wanted to start the New Year of 2005 with some profound understanding of where I was heading in the next year of my life. I wanted to be able to wrap my fingers around some concrete knowledge, which would aid me in a zen-like state, where I could rise above my body and see the world and everything around myself for what it is, or what I could pretend it was. But I am afraid I can do nothing of the sort. All I can aim for is a pause in the breath of a day, where the blue sky will bring me the ultimate pleasure, or the song of a bird will possess more vibrancy than the total minutes taken to walk the surface of the moon. As I look at this picture of myself with my newly cut hair in preparation for chemo, I want to take this time to thank each and every single love, friend, companion, and hand-holding person who has assisted me thus far in this unusual journey I am facing. Thank you dearly for supporting me and being my friend. Thank you for your phone calls and your words which have meant everything. Thank you. May we all be blessed with the sweet song of a bluebird sitting pretty on our shoulders leading the way to profound love and friendship in the coming year of 2005.


12.27.04 Cutting of the Hair Let’s just say I cried hard when that pile of hair was released from the roots of my scalp. It was horrible at first to have that hair that has become so much a part of my identity taken from me. Funny how a thing such as hair, or even a lack of it, can make a person. Now, in retrospect, an hour after the hair was cut it wasn’t so bad. I mean it didn’t feel so bad. It was okay in fact. I felt free from the thing that has identified me as me, which really was never me in the first place. People I know walk right by without even glancing my way—did they forget my face? Was my hair that big that even my eyes spoke nothing because they lived under the shadow of my ancestral DNA? God forbid. Never do I want my eyes to go unspoken, nor my smile, which can say so much more than the locks binding me to the roots of my cells—my ancestral cells, cancer-loving fast cells. My astrological reading in the morning paper told me today was to be a new day and only good things can come my way. My astrological sign: The Scales, representing justice and balance. It’s rather noble if you think about it. And you know, I deserve that much—justice and balance. The morning paper said so. It must be true.


01.06.05 First Day of Chemo Today is the first day of many days to come where tubes will be connected to my arm, and a delicate poison sweet something will pass through my body to kill the possibility of fast growing cells. A fast growing cell has many faces. It is a cancer cell. It is also the hair on your head and the lining within the stomach and digestive track. That is why, hopefully, any cancer traversing through a person’s blood system will be killed by the application of chemo and along with it the hair on your head and the lining of your stomach. Sweet something is what I call it. That sweet something will be something in no time, letting itself be known better than any lover’s arm wrapped tightly around one’s waist. I cannot lie and tell you that I hold no fear. I am afraid of the unknown, the side effects, the limbo in which I will live for the next four months of my life. How will I change because of this? Who will I become during this time? Will I lie in my bed, face up, counting the spots on the ceiling or will I see visions of my life and how it should be lived from this moment on? My physical therapist is a Buddhist. He treats me twice a week. His hands rub cream on my back while we discuss “fear.” He tells me that fear should be acknowledged—to not shove the thought away but rather look at fear directly and ask by choice for a place of acceptance. It has taken me days to understand, conceptually, how to ask, and I am still not sure if I understand. So today I ask My Fear to walk with me, our hands clasped like soldiers in conflict. Please sit with me in the light of a stark desert and blow your gentle winds in the direction of the northern star so the twinkle of sweet something will only be a twinkle and not the big bang of celestial beginnings, all demanding, mystical, and overbearing.


01.09.05 The Injection of Chemo This is Nurse Katie. She is a traveling nurse. She worked first in New York City, and then Denver, Colorado. Now she is in San Diego and has decided to stop and plant roots. She likes it here—and she was good at explaining what would be happening. The fluid you see her injecting me with was the first in two applications of chemotherapy named Doxorubicin. She told me my urine would turn red, and sure enough it did. For the whole day. Later, during the treatment my father stopped in to visit. We had this quiet private moment but perhaps not so quiet since there were seven other people in the room. Standing near me he said in a very quiet tone, “I like you in your cancer, you seem so much happier. Before you were always concentrating on things that made you depressed and sad but now you are not. You are a happier person today.” And I wasn’t sure how to digest that comment, and I didn’t even respond other than stutter and make a noise in my throat. In fact I am not really recalling the response other than the shock of his statement. Is that really true? Has cancer given me a place of reprieve? Do I have something to focus on other than what seemed to weigh me down—moments that were nothing but weightless issues we all seem to think are important? I guess that is the gift I received for the day—to realize what is important in life: not the small moments that bog us down with weighted realities, but rather the larger moments like the gesture of your father leaning into your ear telling you how lovely you are under the gossamer of red fluid flowing eagerly down the winding brook of your life.


01.12.05 Metallic in My Mouth I continue to hear how easy the first two weeks of chemo are to the body. How forgiving. How the metallic taste in my mouth is only the beginning. The undulating currents of my stomach have yet to give in to the known flavors of past, present, and future. I wait anxiously like a child sitting too close to the edge. I press my toes against the floor knowing there is more to come, a rumble so deep, I can only pretend to know its power. And with that said I say I am afraid. I am afraid of the rumble and the undertow. I am attempting to go about my day possessing bravado when women chemo-saints tell me to expect more. And like that good student I listen to these women warriors from chemo-past, and as a student of the future, I gasp with anticipation for the floodgates to open wide and vast and articulate, like the tsunami of my being which is simply waiting to be born.


01.16.05 Red Meat I do not consider myself a vegetarian. There are all levels of “vegan” eating, but I do eat fish on a daily basis so I don’t consider myself a true vegetarian. So when news arrived on Thursday that my white blood cell level count was low, it made me sad. I knew the medicines I had been taking daily were there to protect my cellular blood levels and speed the process of production within my bone marrow, but knowing I had to continue taking them, a shot nightly, got me down. I was hoping for a week’s break of being pricked. After talking to a friend who had to go through a whole year of chemo, I learned I could help bolster my marrow production by including red meat, especially marrow from an animal or their organs. I have never eaten an organ before and nor will I, but I will eat red meat if that means I might go without the nightly prick of a needle. At this moment I am very susceptible to people and their diseases, tiring easily and in need of rest, but my spoiled self wants to go all day. I want to be somehow normal. My mood depends on that thought. Not only that, but I wanted to believe my good health coming into this was going to play a greater role. I guess it has nothing to do with my health and how well my white blood cells reproduce and protect prior to chemo. It’s rather the here and now. One day it’s sunny numbers up, and the next dreary down. And you never know from week to week what end those numbers will turn up. It’s like a crapshoot, worse than Vegas. At least in Vegas you can bet on the odds.


01.19.05 Female Identity My physical therapist asked me yesterday how I felt about losing my breast. Without thinking I answered him, “It’s not an issue, it’s just a lump of fat,” He told me his mother almost had her breast removed and she had a difficult time with the thought of losing hers. This morning after bathing I looked at myself in the mirror and thought of his question once more. I looked at my nipple-less reconstructed lump that mimics a breast thought it odd-looking with its scars and patched center. My good breast, swooping down and moving in the soft manner breasts do had such a good way of shifting with my body, and then I realized that is how a breast is meant to be. I have never attached any emotional association to my breast and it’s never been a problem. I did not grieve for my lost breast. It does not define my female character, the person I am. And why should it? Why should such an object be the defining factor in my relationship with my female self? A male friend told me this weekend if he ever had to lose a testicle he would be devastated as it was his manhood and he would feel a loss. I know every person has a different relationship to his or her identity but should a lump of fat or a testicle change the thought of yourself as self? Should the thought of one’s disease outweigh the external losses such as flesh? As I move into my second round of chemo this week my thoughts are centered and balanced on simply being able to eat, and having a day where everything is good, and the sunshine actually make its way to my face. I feel thankful for the things I have today: an appetite, eight hours of sleep, and the ability to walk without too much distress. Life is good, and so is my fake breast sitting round and high without the mark of a nipple. Life is really good because the essence of my self doesn’t need to be based on the notion of a female identity, but rather my identity as an individual, clear and subdued, like the endless horizon of the desert floor rising silently from dusk into night.


01.01.05 THX 1138 Second Round of chemo and my hair promptly began to fall out. This morning I woke to many strands of hair on my pillow. I attempted to count each one, children from my head, but that became a decorative process more than constructive. I refused to take a shower this morning in fear of what I would find caught in the mouth of the shower. Tonight Darren shaved my head, my scalp fixed tenderly with his fingertips as he moved the clippers back to front. I held myself in the act, and I felt so small, so inside myself. I felt lost.


01.27.05 Two Down, Six to Go I have been sleeping for days. I am waking from dreams I cannot remember, and experiencing fainting spells when I stand-up. All the while I still have the hope that today will give me something good to chase. I fantasize about the future, three months from this point, and I try to imagine a day when I won’t have to think about the stale flavor of dusk in my mouth. My diet is always the same and I am pleased. At least I can eat. At night my dog Lucy lies by my side sighing and I wonder if she can smell the chemicals leaking from my skin. They say dogs can sniff and point to the cancer in humans. So I wonder what she smells as her pale and aging eyes look into mine. We stared at each other this morning, our heads side by side on the pillow. I wish I could ask her what she smelled months ago—when the cancer was digging deep into my breast? Did you smell it then? Is that why you look at me with such knowledge, a psychic of profound talents—as you huff through your nose, your jowls drooping with anguish as we stare into the mirror of each other’s soul, you sniffing out the devil better than any chemical could?


02.05.05 Time Will Tell All AWS. Auxiliary Web Syndrome. Another term is called “cording.” And 95% of all women develop some form of this muscle deformation post-surgery due to removal of the lymph nodes. I cannot tell you how long after the mastectomy I developed the cording, but I do know my arm would not move well in any direction. At first I thought this was due to the breast reconstruction, but that was not the case. I learned of this problem when I went to the physical therapist one month ago. He gave me literature pertaining to the issue because it was evident to him the minute he started to treat me. The ropes stuck out hard. How would I know—my under-


arm was numb, and still is two months after the surgery. Since I have begun physical therapy, I possess 95% range of motion in my arm going forwards. But it is still difficult to raise my arm sideways and I have to “think” about the process, visualize its momentum. Atrophy. And it’s the re-training of those muscles that I must exercise—tied down to the cording of my lost nodes. It isn’t enough, the work that I do, but time—time will tell all. Just like everything else: the chemo, the fast growing cells. Time and patience. Time will tell, and through it all, it has to be enough.

02.07.05 Third Application I read once that Hemingway, when he sat down for the day to work on his novels, began the first sentence from a place of truth. If not, then the whole day was simply a loss. I am no Hemingway nor do I pretend to be, but I’ve always remembered what he articulated in terms of his writing because I’ve felt life is much the same. If we don’t start out our day as a truth, then what is the point? If the words we speak and the language we use to describe who we are and our actions are not truth, then is it trashed? This past Thursday was the third application of the “bad stuff” that sweet something. Since then life has been a simple action from one day into the next. I concentrate on holding food in my stomach and not losing it to the toilet bowl, and today is the first day I have been out of bed and walking, tender— asking for my legs to hold me strong. Last night I had funny dreams that I was writing essays of my experiences, and each and every essay seemed to come from a place of amazing truth. Of course I can’t remember the words or the language, but it seemed to be fluid and abundant. The words were pouring out, and the descriptions of what I was experiencing somehow seemed more than I could ever articulate here to you now. Maybe that is the point; that even in the fog of chemo chemicals and shifting consciousness, even then, I dream of truths. Or perhaps, I desire to dream of truth as I know best. I am not sure what it means, to be always cupping the edge of some unknown reality—waiting patiently for the end of these drugs coursing through my veins to be exhausted, and to leave me with the truth of all my being—all alone and well.


02.14.05 Happy Valentine’s Day These are my parents. Mom and Dad. Lillian and Biggy. This is a photo of their engagement day, my Mother sassy in her crème dress with a big bow tie and my Dad in his blue suit. The good old days. People dressed up for occasions such as this. This Valentine’s Day, I wanted to show the picture of the people who have been nurturing me, keeping me in their home during the “bad” week of chemo. They have no issues feeding me all the quirky foods my taste buds and stomach can handle: English muffins, peanut butter, swiss cheese, apples, plain-boiled and tasteless chicken, and lettuce leaves (thanks to my father’s organic garden). That is about it. That is all that I can handle during the bad week following chemo. You’ve got it, my tremendous diet that leaves me feeling rather lucky I can eat at all. These are the foods that my life rotates around. Every two hours I try to eat a handful of food from my limited diet. My parents are saints as they keep the house stocked with such foods, always introducing some exotic, perhaps pasta with two tablespoons of sauce to wet the noodles just enough. These are the people who are by my bedside waiting out the storm just as anxiously as I. And I love them. Thank you Mom and Dad for every handful, for every pillow adjustment, for every blanket you lay across my body limp and exhausted from going into the ring and fighting the most important knockout fight ever. Thank you. Love, Adriene.


03.02.05 Visiting the Oncologist I experienced my first hot flash yesterday. At first I thought the heat was turned up in the room. My face was flushed and my body hot. Really hot. Was it because the hat I was wearing was polar fleece? I felt a heat wave passing over me. Then I thought: is this the infamous hot flash? Because my menses has stopped I was expecting some sort of retaliation. I had to ask my male co-worker whose wife had experienced her menopause. I asked, “Is it hot in here? Feel my cheek. Am I sick or is this a hot flash?” He confirmed my worst fear: yes, it appeared to be a hot flash because no sooner than I asked it was leaving my body quickly like a wash of spring rain. And there you have it­—the menopause has begun. The chemo has shut down my cycle and the inevitable has commenced. There is a certain amount of excitement to this news: education will begin on how to deal with this twist of fate. Osteoporosis. Calcium supplements. My new life. Like a broken record I say to myself, I’m so young to have this betrayal, but this time I do not cry because this deception was expected. It did not come out of nowhere. I cannot lie. I have to be honest. I look into my hands and know that aiding the enemy is the least of my concerns.


03.10.05 Sweaty Little Balls I found this picture of myself the other day. And boy did I cry! I thought of myself topped off with a tiara, all smiles, indulging in my internal happiness. Good times. I cried over many things, but mainly a moment of pathetic loss over my hair and my lackluster attitude. I remember being happy when that picture was taken. For the rest of the day any little thing would set me off. I would cry in the car. I would cry brushing my teeth. I was aware my hot flashes had increased, and lurking in the background was an undertow I could not recognize. Then it came to me: my tears breaking without a moment’s notice were my menopausal swings! Then I had to laugh because thank you I am not bitchy, just weepy. Weepy. I had to laugh because despite the fact that I was, and am, experiencing what every woman knows is the inevitable, even in those hot moments nothing is worse than chemo. What else can I do but laugh? These sweaty moments are amusing to me, not painful, and the tears of unexpected grief are simply a gift, just a wash of experience endowed in a way that is diminished by the powers of chemo. Because let me tell you there is nothing worse than chemo. Nothing. Never can I look back on this time and complain about some unsettled sacrifice or source. I will always remember my personal tiara. May those rhinestones of internal happiness catch me smiling and laughing from those sweaty little balls balanced tenderly on the tip of my nose. Menopause. Really, it’s bad but it’s not that bad.


03.16.05 Interfere I have to say this is a first for me—having my blood pressure taken on my ankle. I started a new chemotherapy drug called Paclitaxel (otherwise known as Taxol). The nurses were monitoring my vital signs because it was my first time on this drug and there was the possibility of experiencing a reaction. I have to say it was not an easy chemo session. The gods were not kind that day. Instead of kindness I received a handout full of information that would soothe me, “Paclitaxel is made from the needles and bark of certain kinds of yew trees. It is meant to interfere with the growth of rapidly dividing cells, like cancer cells, and eventually causes these cells to die.” So I say to the gods interfere with the cells, interfere with my blood. I may lay limp and damp with fine needles stuck in my arm, but eventually I will be rid of cancer no matter what. It’s just a matter of time.


03.23.05 Peso the Sleep Assistant There are days that are good and days that are not. Taxol makes the first five days of the chemo application extremely difficult. It’s painful to move, and frankly I don’t want to. I would rather sleep as long as I can so time compresses and the visitation of evening comes more quickly than anticipated. On this day I spent the afternoon sleeping on Darren’s couch with Peso propped in the crook of my side. His sweet breathing rose and fell with the cadence of my own, and somehow it was more than comforting. Animals know and they watch over you like silent Pharaohs guarding the entrance of the soul. Like my own dog, Peso must smell the pungent chemicals leaking from my skin. His silent watch is more than I can bear at times— looking at me with his full eyes. So instead we sleep together and lull ourselves with the full moon, the tides counting the rhythm of each breath as I continue to count the days until this ritual is no more.


03.27.05 Happy Easter In celebration of a good day, indulge with a walk to the park. Lie on the grass and look at the sky. See what beauty the simple will bring: the shadow of tree limbs delicate on grass, a palm tree and a cloud stark against the blue sky, and the curious frown of your dog while children play in the distance. It’s days like this that help one see the metaphorical light at the end of the tunnel. I saw mine. Two more chemo applications left and then I’m done! Mark the calendar, April 14th. Eighteen more days, six hours, twelve minutes, and twenty-two seconds! I can hear the clock now and it’s ringing loud. It’s roaring and I’m deaf with delight. Just two more times. One. Two.


04.08.05 Golden Statue With one chemo application left I have been taking care of my “chemo arm” like it was a golden statue. The veins in my left arm, my chemo arm, were considered ropes by the nurses. They told me there was no need for a port that would have to be surgically inserted into my chest. Instead use the ropes. They looked strong enough. With my last chemo just around the corner I stretch out the sore arm and drink water to plump the veins. I also curl 10 pound weights every day to pump the ropes and keep the arm strong so that what soft veins are left will take the needle and kick back blood to the nurses. Kick back. Kick. Drink the poison. Only one more time. Golden statue of my life kick back as hard as you can because I’m on the breaking point and I’m tired, really tired, and I’m ready to move on to the rest of my golden life.


04.16.05 Postponed The last application of chemo was postponed. I contracted the flu and my white blood cell count was showing an infection. Rather than risk the chances of hospitalization, I opted to wait out the illness for a week, cancel the chemo and continue the following Friday with the last session. Mixed feelings, of course. Depression sets in as I seek the final stages of chemo to be completed. How much more can I take? And yet I somehow feel grateful that it’s only a week away, once again. I tell myself I will get through this. I have no other way to react but with the voice of eternal concern, for solace and comfort. To put it simply, though I have moments that challenge the core of who I am, deep inside I know the finish line is only days away.


04.21.05 Floribunda A pale fuzz, soft as down, covers my head. I pass my hand up and over. My scalp, running towards the future, is blooming rich and translucent. I wonder what fine roots will set forth only to fall out like a newborn’s first hair. Patting my breast I feel nothing. I sometimes yearn for that feeling again all the while knowing the nerves will never reconnect. Be satisfied. Be satisfied. My sweet loss is only the beginning. Think of the goodness to come, what fine experiences will add up with worldly notions, sun and moon and the grandest nod: life itself. It is an understatement to speak of cancer as the greatest fight of all because it is so much more. It is the testament of fortitude and beyond being dragged into the depth’s deep. And yet these words do no justice. I cannot articulate the difficult passage. It simply escapes me. Floribunda, day breaker, honey perfume pink and red. I look to others who have come before me because it is only through experience that knowledge is gained. All one has to say is, I am a survivor, and that is more than enough.


04.27.05 Last Chemo I was mistaken for Mary when I walked into the new infusion room. Apparently Mary wears pink to every single chemo session. The nurses said she wears high heels as well, like myself, and that humors them for some reason. I was with new nurses, a new crew, and they did not know me. They did not bother to look at my face, but no matter. It was my last chemo session and I was happy. I was looking grand apparently, pretty in pink. It was my last chemo session and nothing could change that fact. Pretty in pink. Pretty in health. Pretty as a survivor. And all I can think about is moving on! The poison is over. Time to move on, and once again, start having a relationship with my life. How pretty is that?


05.02.05 Blonde at Last My PonyCap arrived in the mail yesterday. It’s a baseball cap lined in soft cotton with human hair attached to it. I don’t like wearing wigs much, and though I wear scarves, they give off the look of “chemo girl.” I simply want to be in public without feeling as if I’m wearing a costume and without people looking twice at me. Not that I mind so much, but it’s hard enough with my eyebrows and eyelashes gone. So I’ve been wearing my baseball cap non-stop and I cannot tell you how wonderful it is to feel covered, and blonde to boot. Hey, who knows what color my hair will grow back, and the curl? Will I have my curls? Only time will tell. For now I’ll stick with my PonyCap and ride the wave high because I’m feeling pretty good now working my way home to the only hair I know.


05.15.05 Returning to Ballet It has been five months since I last attended ballet class. Yesterday I returned for the first time since I started the chemo regime. I cried when I saw my ballet teacher because it was rather emotional to return to the place you consider the house of love. Ballet is very much a practice of living in the moment. With ballet you have to be in your body completely, feel every nuance and gesture to perform the task. You cannot have your mind wandering in the past, nor the future. It has to be in the present, and you have to be living it to understand the mantra of your inner ability. Life is a collective agent of our memories and experiences, but to truly live, the only moment that matters is the here and now. To focus on the past, or to glance towards the future is only a ruse or disguise for what we are avoiding. What really matters is how we choose to live this moment. Coming out of the dense thickening of my own recent past, what I have learned is to remember the moment that I am living. Even when I was sick from the chemo, the moment was more apparent than ever. That moment had to be there in order to know how to move forward in wellness and with the knowledge and power of my own being. So when I was in ballet class yesterday, with the incredible support from all the dancers in the room, I made it through barre. With physical difficulty I focused my mind on my body and what it was doing, how it wasn’t functioning all that smoothly, but overall I focused my mind on what my body did remember to the best of its ability. Driving home I cried once again because being in my body at barre, to be moving and living it was an awakening of joy—knowing I am working my way to what is most important: my life as a survivor.


“Ballet is like life. The more you fight it, the more difficult the process becomes.” —Gail Wingfield, my ballet instructor former dancer of the New York City Ballet

05.25.05 Radiate I know. You haven’t heard from me. I’ve been possessed with a thought and haven’t been able to write. Yesterday I visited the oncology radiologist at the University’s new Cancer Center. The exterior of the building is layered to look like the skin of a snake. Its illusion is to change its color with the passing of the sun. It was a purple hue when I was there, early afternoon. It was then I learned I did not need to undergo radiation. I haven’t been able to write because I have been possessed with making decisions about my health. To radiate or not to radiate, that is the question. I’m the kind of patient who lives in the grey zone and there is no definitive answer. Does a 4% margin really make a difference in my life to actually fry my skin and everything else that lives under it? And does a 95% survival rate sound good enough to me? One doctor told me, “You are smart, you read the statistics.” But sometimes you need someone to hold your hand and speak to you like they were your lover, to take the time to whisper the future into your ear and to impart some greater knowledge which only you can decide upon. And because I was waiting for that knowledge I could not write. I had to close my eyes and listen to my voice and wait for the answer only I could decide upon. And sometimes, 95% is good enough; it’s good enough because that inner voice told me so. Trust the future. It’s so alluring, shining and bright—so bright I’ll have to hold my hand to my eyes to shield the unknown, familiar already with the very gasp of air I take each and every waking moment of my beautiful life.


06.19.05 Even at the Park Today I met a young woman with thyroid cancer. I was at the park with Darren and the dogs, and a small dachshund named Betsy ran to us floppy-eared, sweet. Betsy was more concerned with dog socializing than being a therapy dog to her owner, Heather, at least that is what Heather said. With a scar across the base of her throat she explained she had thyroid cancer, had two operations to remove lymph nodes and had been through radiation. The last 1.5 years of her life have been nothing but this. And with deep knowledge and understanding of Heather’s tired life, I nodded. She called us sisters. Sisters of Cancer. And I felt touched because it was true. We were sisters, two strangers who had met to have an exchange of experiences, to shake hands and acknowledge each other. It was no coincidence we met. It was simply a positive confirmation of our lives, accumulated and bright like the green grass gathered moist and soft under the shade of a lovely tree.


never a coincidence.

07.12.05 Can’t Explain the Feeling There’s something about feeling frozen, metaphorically speaking, where the mind wants to communicate but the body doesn’t move. And I’ve been wanting to communicate lately, the weaving of words and images, to explain why I’ve been away, feeling frozen. It’s not like I’m depressed. I’m not. Rather I feel a pool of something, gossamer over water—and I am suspended. Time moves on but the desire to document my uneasiness has not been favorable. How does one capture that empty spot where one can put their finger within but not describe it? I keep saying to myself, be patient. The body will lose the aches and pains, and emotionally, the indescribable abyss will become something other. Today I meditated on experiencing good health, love and protection. Sometimes that is the best I can do—and that is OK. The good news is I am months out of chemo and I believe I’m doing rather well. Some time ago swirling pools and fine fabrics were what I imagined while deep in nightly dreams, where twill weaved delicate details with forecasts of the future I am now finally beginning to recognize. And this is good. Very good. The road to recovery has been amazing.


08.02.05 All for a Reason My final reconstructive breast surgery has been cancelled, yet again. This makes twice that I have seen the plastic surgeon only to be told the surgery will not be taking place. Bureaucratic paper shuffle has made it so my surgeon has to dance a pretty tune to the IRB Panel that only convenes twice a year to review applications to perform breast reconstruction with the use of silicon implants. As frustrating as it all seems, I choose to view the series of rejections as moments of real intervention. The time is not right for me rather than things not working out for the surgeon. My guardian angel is watching out for the welfare of my recovery, and with that intervention comes wisdom in knowing all things come in time. The edge of twilight holds nothing to the sunrise of the passing night. Nothing, but nothing, is truer than what is now. And if the surgery is not taking place, than nothing can be more exact and good than what is in the moment. Hear those echoes? It is the song of a bird, high-pitched and sweet. It is the tale of things to come. Melodic. Beautiful. Strong. It is simply the song of where I am to be.


08.09.05 Hair from the Past I find strands of my old hair from time to time. They float out of the corners of the room, long black curly strands. Flashbacks from the past. It has been ten months since I have begun this walk from diagnosis to recovery, only months, and it seems like years—another life. I run the strands of hair between my fingers to feel the edges and roundness of them. They say a single strand of hair can expose a person’s DNA, all of it, even that which defines the sequence and patterns much like a fingerprint. It is called profiling. Genetic. My parents, though holding their own patterns, have no link to my past or future. My cancer was not genetic. I find it odd that old pieces of my hair keep cropping up, entertaining me with a view of what I had known. I believe they arrive to remind me of the life I had prior to breast cancer, and that it is distinctly in the past. What I am living NOW is truly the future. A friend with breast cancer once told me, “the process is one year out of your life,” and she was right. Time moves on, and with it, the prospects of everything new: there is no way to see your life other than refreshed, the wash of one life behind you with a new one sitting right out in front, clean as a whistle. New. Seriously. There really is no other way.


10.13.05 A Trip to Hawaii I know. It’s been a long time since my last entry. What can I say other than I had nothing of importance to share. My breast reconstruction has been put on hold leaving me in limbo. After spending a summer experiencing a cold every three weeks and hot flashes that left my bed soaked and my body exhausted, I simply got tired of talking about it. So instead of focusing on my repetitive issues, I treated myself to a trip to Hawaii. Lush greenery, wet air, and blue skies were truly a reprieve. Even with lopsided breasts I easily wore my bathing suit not really caring if anyone noticed. Every wade in the salt waters became a blessing of a medicinal kind. I knew I had to face my life at home, but for that one week I was a care-free traveler gracing the shores of Hawaii. And you know, it was all good, lopsided boob or not.


10.21.05 One Year Ago Today One year ago this day I found my lump. One year ago this day I walked the UCSD Chancellor’s Challenge, a fund-raiser for the university. And one year ago this day my breast swelled and ached after the walk. A friend assured me cancer doesn’t act this way. And, of course, that was not the case. If it were not for the Chancellor’s event I may not have found my tumor. One year ago this day I lay in bed and cried because I knew something was wrong. You always know, you know. Today I walked the Chancellor’s event, my one-year anniversary. And looking back, one year ago this day, I reflect on the road that is becoming not less traveled. One out of seven women will experience breast cancer sometime in their life. And those are staggering odds. One year ago today I became a statistic. And one year ago today I began a new life, a new way, a journey which I will never forget—craning my neck high—always on the lookout for the sweetest and the most honest of all views.


10.24.05 Making Strides The American Breast Cancer Making Strides 5k walk took place yesterday. My teammate, Anne Colburn and I raised $940.00 for the event. I wanted to thank everyone who donated to Anne and I, and our efforts to help raise money for the cure against breast cancer. Thank you!! It was truly a moving event. I was given this “survivor medal� as a part of the event. I wore it while I walked the 5k course. The best part about this was the community of people who wore these ribbons. Both men and women could be seen with them, which in a striking way shows that men have the need to talk about their own survival, that they also have a need for a community where they can share their experiences. We all can’t be Lance Armstrong, but we can certainly have a voice and have a day, male or female, to celebrate the joy of living, and to let everyone know of our pride, embraced in the unity of a community that defines survivorship as a genderless experience. So thank you, again, to those who donated to this very deserving cause. I appreciate your response and your immediate reaction to my call for help last week! I did the walk with all of your in mind because I was walking for you as well. Remember, this is a team effort and I am always on your side!


11.05.05 An Examination with the Oncologist I visited my oncologist today for a brief examination. She asked how I was doing, how were the hot flashes? I explained I was seeing an acupuncturist to help curb the night-sweats which have been very difficult over the last six months. She asked, “…what does the treatment entail? Where do the needles go? Do you feel a difference?” I explaining the multiple needles used and how I can actually sleep at night without having to get up at 3 A.M. to change my sheets and that this alternative treatment has been a reprieve from the instant aging brought on by the chemotherapy. She did not seem impressed with the results and was more concerned with the sterility of the needles. I was hoping for a different dialogue, one that would bring us closer. With that said I could have asked her to explain what it means to age. Explain why, within months, my body does not function in the same way it always has. Explain to me how to be at peace with this process. Explain to me how to embrace the coming of a new dawn. Explain all the things you cannot explain because they are so intangible, this newness, this aging, the instant process brought on by a single tumor, now eradicated. It’s the little things, that make a difference. Little needles. Between the eyes. Hold me sharp by my wrists. I’m all yours.


11.13.05 My Yearly Mammogram I had my yearly mammogram last week. It hurt more than I remembered. I don’t know if the technician “squeezed” me more because of my case history, wanting to be diligent to get every single ounce of correctness from the scan, or if I’m truly bruised from the general procedure of compressing the fatty tissue of my one and only breast. Either way, the process was still interesting. It’s digital now. They don’t use sheets of x-ray film anymore, nor does the technician run out of the room before zapping you with x-ray force. She stays with you, and of course, I was pleased to not be left alone—and to be able to see the images right away, to have an instant analysis. All is good. All is clear. They even scanned my pretend breast to check the skin for possible marks—and all the scan showed was a round balloon with a metal port. To see the temporary implant and the fine line of skin holding it all in as it rests inside of me was strange and intriguing at the same time. I have webbed detail of abstract tissue in my left breast with the round translucent orb in the right. It’s odd and beautiful, really, to have such a freakish reality. It’s my reality and I’ll be living with it every single year as I go for my mammogram, as you should too. To be safe. So that you may live life well.


Mammography machine.

Digital scan of temporary implant.

11.18.05 Anniversary Tomorrow is the one-year anniversary of my diagnosis. November 19, 2004. It was a Thursday afternoon, 4 P.M. My doctor called and gave me the diagnosis over the phone. He felt I should know immediately. For the past week I have been feeling nostalgic. I remember in a fond fashion what I did in order to prepare myself for some very large decisions, moving in a very hyper-aware state in order to process the diagnosis and everything else that went with it. But when all is said and done, nothing really prepares you for survival. With the conclusion of the treatments, we the survivors are asked to embrace the well-ness of a new existence without any attention paid to the path of the body and soul as a reconstructed and patched person. I no longer believe in coincidences, but rather purposeful experiences. Call it fate. Call it what you will. But I do believe that what is meant to happen, will. As it should be I came upon a powerful article articulating the very thing I have been struggling to express, even to my own self. The undertow of uncertainty surely has been a silent partner walking hand-in-hand with me in my daily life. I am uncertain about how to move forward save for the instinctual feelings I have knowing that what steps I do take today are the right steps towards my future. So that is the path I follow. But I want to share this article with you because of the power and the sentiment it exudes of the very issues I am unable to write about. “Discourses of Concealment� is an article addressing issues of survivorship and the societal relationship between illness, disease, and perfection. Though we do not talk about it, or we are not given venues to express these sentiments within the medical setting, I hope that a dialogue will begin about what it means to be a survivor, how we embrace the notions of love and acceptance after radical therapy, and how to have a meaningful life with full-bodied experiences that do not reflect upon the memories of chemotherapy and the return thereof. 92

marks the spot

12.05.05 When the Journey Began One year ago today I lost my breast. One year ago today the journey began. One year ago today I no longer was the person I knew, but a person I would come to know. There is a certain intimacy, a particular knowledge one begins to possess with the coming of things unknown—but the beauty is the conclusion, the finish of all that which scares us into being and scares us into a future of infinite possibilities. From this point on will be days of cyclical bravado. They will be cycles of one-year anniversaries, and then two years, three. I will be thinking of days and dates with fondness, like a birthday or some special occasion. I will never forget a day like this one. I will never forget the fog of surgery and the coming of dusk as I awoke from that surgical ether. Perhaps some time in the distant future I might forget this day, but for now it is still fresh. The rising of certain memories stays close, their nuances tactile and their smells real. And I keep near to my heart these very things­â€”because it is these memories that create a clear distinction between then and now. I am humbled by my progress and continue to be humbled by the person I am becoming. When I started this photo blog I called it My Life Will Never Be The Same. And that statement is so true. It will never be the same.


02.24.06 Reconstruction Today I was fitted for breasts, silicon implants that is. The day has arrived. My reconstruction will take place on Monday. The hard ball of water mimicking my breast will be removed, and in its place a silicon implant will take that vacant spot. My chest muscle will be pushed away from the chest cavity, bone and fibrous maze, and the new implant will go into place. I am told there will be discomfort, I am told a drainage tube will be used for four days, and I am told, when done, I will be good as new. Good as new. My Frankenstein chest will be as good as new. Good fortune will be my new friend. The dance of discovery will become my partner better than any beacon of light, better than the celestial star of moon past and moon future because this girl is going home to her own beacon of becoming. The becoming of a new future.


03.03.06 In the Smallest of Openings I was not nervous. I had no opinion. All I knew was that I was going to be different and that difference would be for good. On Monday morning, I lay pristine in layers of blue, while my chest was cut open: silicon implants squeezed into the smallest of openings. The pain would prove to be almost unbearable. To think women electively choose to open up their chests to the unknown, to be a shadow of their former selves? I also took it upon myself to become something other than, to become a shadow of my former self. Bound tight my chest rolls with the intention of the female identity I knew, and with this transformation, the reconstruction becomes a voice of something odd, yet somehow familiar. It is the transformation of a historical closing, a passing from one life to another. The cancer is behind me. The chemo is over. I see the end and I feel somehow lost. To move on. To embrace the grace of survivorship. To see the world as mine, my own, reconstructed, idealized. I am all of these things: survivor, beauty, bravado in the making. I am my own gossamer, now, and for eternity. I am me. Forever.


04.21.06 Grandeur: 1. The Quality of Being Magnificent or Splendid or Grand Today is the day I have come full circle. Today is the day one year ago that I completed chemotherapy. And how has that time been spent? Gracefully I say. Life has traveled through undulations of grandeur, dodging the deep pockets of all that has been handed to me on a golden platter: chemical recovery, emotional fallout, a compromised immune system, hot flashes, growing out my hair, and finally the surgery of reconstructing my female self. It has not been easy, and still today, it is not easy. My daily dose of Tamoxifen is my reminder of survival. With every swallow I think of where I have been and where I am going. I see the complexity of survival as being such an important issue. How do we, the many out there, make sense of our survivorship without feeling like we are lucky for being just where we are: walking the earth and not buried beneath the ground. You know what—I worked hard. I worked hard to be where I am. I lived connected to needles and tubes and bright pink chemicals for months so that I could be here today. I worked hard in my undertow for reality. It was the most real and difficult journey. And you were there with me. Grace. That is what I call surviving. Grace. Can it be any more poetic than that? It is beautiful and painful and bitter. It is the wind beneath my fingers moving slightly and magnificently. It is what gives me faith that I am the spirit of all my being. So thank you for being a part of my path. Thank you for the support and all that you continue to say and do to move me as my friend(s). It is the grandeur of my life that makes knowing you the meaning behind all that has come before, and all that will come after.


This will be my last entry on the Survivor Blog. I am finished. And I am complete, at least I feel I am. Now it’s time to be in health and in love and in gratitude. To be at another level. It’s time to move. Move. The wind beneath.


Links Adriene Hughes Jacki Donaldson The Cancer Blog Miriam Engelberg Young Survival Coalition A Patient’s Perspective: Health and Healing from a Patient’s Point of View Article: Discourse of Concealment Hip Hats Megan O’Connor