My First Year of Living with Breast Cancer:
By Stephanie M. Day
Back to Stitch in Time
Installment One dealt with the diagnosis of Inflammatory Breast Cancer and recommended treatment. Installment Two dealt with the first three-month treatment regimen and side effects. This third installment recounts surviving a mastectomy.
Good News: The Diagnosis Was Correct; Bad News: The Diagnosis Was Correct
Inflammatory Breast Cancer (IBC) is the most aggressive form of breast cancer, but often is misdiagnosed due to its rash-like appearance. According to Marc Silver, an editor at U.S. News & World Report, and author of the helpful book, Breast Cancer Husband, “the gravest type of invasive cancer is inflammatory breast cancer. Its rapid spread makes it the most dangerous of breast cancers. This uncommon variation affects only 1 out of every 100 women diagnosed with invasive breast cancer. The signs are striking: red and warm skin on the breast, skin that resembles the peel of an orange. Mammograms have a hard time picking up inflammatory breast cancer because it starts in the skin and grows inward; the condition is often misdiagnosed as mastitis—a breast inflammation sometimes found among nursing mothers.”
I feel fortunate that I am still alive and feel pretty well as I write this in July 2006, two and a half years after having been correctly diagnosed with IBC by the first doctor to see me, surgeon Dr. Mathew Hansman. IBC is rare and I have heard horror stories of non-specialists not recognizing the malady and treating it as though it were a rash, thereby losing valuable time that could have been spent giving the patient chemotherapy, usually the first step in a multi-pronged treatment regimen. Without systemic treatment, chances of five-year survival with IBC are very poor, according to www.komen.org, web site for The Susan G. Komen Breast Cancer Foundation. On the other hand, Komen also says that with recommended treatment, about 50% of patients will live for five years after diagnosis and about 35% will be cancer free 10 years after diagnosis. In my own experience, I have met one woman who is a six-year survivor and have read about another, who not only is a 10-year survivor, but was told three times that she had only three months to live!
Tip #11: Do not obsess about statistics; they are only numbers and every body and every case is unique.
Septic Shock; Septic Tank Body?
Since having been diagnosed in December 2003 and completing my first round of chemotherapy in March of 2004, I had lost 23 pounds, my hair, and my Dad, all within a span of some 90 days. As I recount my saga, I feel as if I am writing two concurrent stories, one of the physical and emotional strains of having cancer and the other of losing someone extremely important to me. These two intensely emotional experiences are intertwined.
Before each chemo session a “finger stick” blood test is performed to check blood counts to verify that chemo can be given. On March 26, which was to be my last chemo session prior to my mastectomy, not only were my counts too low for chemo, but I was registering a slight fever. When I balked at going to the hospital for a possible blood transfusion and Dr. Alexander quipped that he would feel really bad if my blood went septic and I died within the next 48 hours, my immediate visual image was that my body had morphed into a septic tank. I did not appreciate then how serious the condition can be, or how close to reality was my assessment. Having since researched the subject, here is what I have learned.
“Septic” is a synonym for sepsis, which is a blood infection. A study published in The New England Journal of Medicine described sepsis as “beginning with an infection that activates a person’s entire immune system, which then sets off a chain reaction of events that can lead to uncontrolled inflammation in the body. This whole-body response to infection produces changes in temperature, blood pressure, heart rate, white blood cell count, and lung function. More severe forms of sepsis can also cause organ dysfunction or shock.” People at risk for contracting sepsis include cancer patients, whose immune systems are already impaired and/or are receiving chemotherapy treatment. According to the National Center for Health Statistics, sepsis is the 10th leading cause of death in the U.S.
I was admitted into the hospital with a condition known as febrile neutropenia, defined by the National Cancer Institute as “a condition marked by fever and decrease in the number of neutrophils in the blood. A neutrophil is a type of white blood cell that helps fight infection. Having too few neutrophils increases the risk of infection.” Included under “Diagnoses” on my hospital discharge sheet was the notation, “Pancytopenia secondary to chemotherapy.” Pancytopenia means that there is a decrease in infection-fighting white blood cells AND in oxygen-carrying red blood cells. A low red blood cell count can be a sign of anemia, resulting in looking pale and feeling tired. I had been feeling so tired that I felt dizzy if I moved my head. I just didn’t know how tired I really was; I thought it was all part of the deal and that I really didn’t feel that bad. Red blood cells and white blood cells plus platelets, which help blood clot and stops bleeding, are produced in bone marrow. Chemo treatments destroy some of the bone marrow cells so fewer blood cells are produced. This last bit of wisdom I found in a handy little guide, called “Understanding Chemotherapy,” produced by the American Cancer Society. In my case, the chemo was doing its job—destroying all manner of blood cells.
Tip #12: If your doctor recommends that you check into the hospital, don’t try to second-guess him or her. Chemo is serious business and it can have devastating consequences.
Fattening the Pig for Slaughter
My surgery was scheduled for April 22, a month away, and I had to be chemo-free and healthy, with blood platelets that would clot.
I checked into Dominican Hospital in Santa Cruz, CA, Friday, March 26, for what was to be a two-day stay. We didn’t know for sure, though, because my time of incarceration depended on my blood counts coming up and my fever going down. Hospitals are notorious for being noisy places and my experience was no exception, but the cancer ward at Dominican was exceptionally accommodating in many ways. I was ushered into a “private” room, i.e., separated from the next bed by a sliding wall, through which I could hear every noise uttered by that patient and her many visitors. That in itself was acceptable, but due to the previously mentioned accommodating nature of the staff, the cacophony of sounds went on all night—in Spanish. The lady must have been quite the matriarch, for throngs of visitors came and went. I enjoy hearing a good story and would have been content to listen to the myriad conversations, but my high-school Spanish skills had languished over the years and the result was that I understood only a mishmash of bits and pieces, which was frustrating. In the morning, I requested a room change, which was graciously granted.
My next domicile was a polar extreme of the first; there was no one in the next “room,” so the sliding wall was pulled back, providing me with the illusion of much larger quarters. During this time, I was hooked up to an IV, which is always a challenge, considering my ribbon-thin, rolling veins. My vitals were taken every four hours and every morning at about 6:00 a.m., a perky lab technician would appear and try to take a blood sample. This is where we ran into trouble. I kept asking the techs if they had any experience with impossible veins, trying not to be insulting, and they assured me that they did, even as they poked and prodded prior to requesting assistance. My doctor stopped by every morning at 8:00 a.m., expecting to see a lab report on my blood counts so he could make a determination of whether to transfuse me or release me. As the weekend dragged into the week, I grasped the concept that I wasn’t going home any time soon. After a few of my morning chats with the lab techs, I finally had to threaten them with oncologist rage. Although I had not witnessed it, I had heard stories of doctors in Dr. Alexander’s office screaming into telephones, occasionally cursing, if they did not have a certain test or lab report when promised. Now, that’s my kind of doctor—a real champion for their patients. This new technique of mine worked, but only for a couple of days, before the old routine resumed. One morning was so bad that the tech performed a finger stick, but the blood clotted before they could run the test prior to my doctor showing up. I cringe to think about what conversations went on beyond my hearing range. I’ve since heard that some lab technicians are given a mere four weeks training before being turned loose on their patient victims. Scary.
Tip #13: Message to lab techs who draw blood: Listen to your patients when they warn you of bad veins. Mine are so bad that the oncology nurses, who in my experience are the best in the business, were begging me to get a portacath implanted for future vein access.
About mid-week, Dr. Alexander decided that because my blood counts continued to fall, a blood transfusion was required. I had never experienced this vampire-sounding procedure and immediately wondered what they did with all my old blood? Drain me like changing the oil in a car? To my relief, I learned that the word transfusion is not a synonym for exchange. Infusion sounds better to me. You simply have new blood added to your old blood, which is absorbed somehow by the body. I was transfused with “two units of packed red blood cells,” which did their magic.
We were working on other ongoing problems during what turned out to be a weeklong stay in the hospital. I had stomatitis, which is a fancy name for mouth sores, one of the most painful aberrations of my cancer experience. As I mentioned earlier, these sores start deep inside your tongue or cheek tissue and grow into white-hot solid sores, so that swallowing your own saliva is too painful to perform, much less eating any type of food, especially anything acidic, like fruit or tomatoes. I was treated with various prescription mouthwashes, including cocaine mouthwash. That’s right, cocaine. Whatever. All in all, things improved by the time I was released.
Earlier in this story, I mentioned how thorough my doctor was in ordering every conceivable test prior to chemo so we would know what my body could withstand. One of those many tests was an echocardiogram to determine the strength of my heart. During my stay in the hospital, Dr. Alexander ordered another one to monitor my heart’s performance due to the fact that part of my first chemo regimen included Adriamycin, which can cause potential heart damage, like irreversible chronic heart failure and left ventricular dysfunction. Per my hospital discharge summary, my echocardiogram showed good preservation of left ventricular function with an ejection fraction of 78% following completion of my adriamycin chemotherapy. Courtesy of www.healthAtoz.com: “The left ventricle is the strongest chamber in the heart, which serves as the main pump of blood through the body. An ejection fraction is a measurement of the amount of blood pumped with each heartbeat. A normal ejection fraction is 50% or more.” This discussion will become increasingly important as my story progresses.
I finally bounced out of the hospital seven days later, on April 1, my sister-in-law’s birthday. I believe Cathy’s gift was late that year, but I will never forget her birthday! As well, I will not forget visits from various friends, Anne, LeAnn, Cathy, Bruce and others. I also appreciate our good friends, John and Randy, for keeping my husband company at home when he wasn’t visiting me at the hospital. It is scary and lonely for life-long companions rambling around the house on their own while you are in the hospital for an indeterminate amount of time. (Having survived my first of three blood transfusions, I can understand why certain aging superstar rock bands allegedly got transfusions routinely to cleanse their blood of various recreational drugs. Rumor has it that they did this in order to pass customs in some countries and to just plain rejuvenate themselves.)
Tip #14: Blood transfusions can make you feel like a million bucks. I felt rejuvenated when I left the hospital. If your doctor recommends one, do it and do not be afraid.
Mastectomy; Lose a Breast, Save My Life?
Life does continue to march forward even during treatment for cancer. My Dad had died two days before I entered the hospital in March and there were details related to his estate to attend to. Fortunately, he had taken out a Living Trust in 1994, so my sister Chryssie and I had direction as to how to carry out his wishes. We knew he wished to be cremated, his ashes buried next to our stepmother’s in their gravesite in Cambria, CA, and that he wanted a donation made to his church, St. Paul’s Episcopal in Cambria. My sister and I carried out these directives with military precision, including a substantial donation to finance a meditation garden in his honor at his church. We scheduled his memorial service for June 2, 2004, hopeful that that would give me enough time to recover from my mastectomy. I had written his obituary the day after he died, so it was ready to submit to The Cambrian, his local newspaper, as soon as his photograph could be scanned and transmitted. Our good friend Mark, a talented writer and savvy computer person, helped my husband accomplish this task while I was in the hospital. Our Aunt GG took care of the obituary for Norfolk, Virginia. Dad was proud of his Virginia roots. During the ordeal of his death my Mother, Celeste, and my Stepfather, Joe, were very supportive, which I appreciate greatly to this day. In an amazing twist of irony, Mother called Dad’s house in Cambria to check up on Chryssie and me when we were saying our final farewells in March. Dad answered the telephone himself (he was lucid until the very last moment of his life) instead of his caregiver, or one of us, and had a polite little chat with Mother; which was amazing as that was the only conversation they had indulged in since my wedding in 1974. Theirs had been a very acrimonious divorce more than 50 years earlier.
My new blood gave me the energy to make the two and a half hour trip to Dad’s house in Cambria a week after I discharged from the hospital. However, I was not prepared for the emotional shock of seeing the rented hospital bed where he had died still in the living room with the bedding intact. Cancer is an emotional roller coaster, but the realization of my Dad’s death was just too much. His perky next-door neighbor, Loretta, a fellow artist who shared much with my Dad, materialized at the front door at the precise moment I was contemplating the bed, and I completely lost it in a meltdown of wails and sobs. After that episode, I occupied myself over the next two days by sorting through Dad’s paperwork, which made me feel like an interloper, that I was somehow violating his privacy. He had been terrified of identity theft and had kept every piece of junk mail in a credenza to be shredded later. It took me eight hours to organize just that pile of assorted documents. And there was plenty more sorting to do; we had an entire house to empty out and the process of going through my father’s things was gut wrenchingly sad. We returned two days later to Santa Cruz for blood tests and an EKG prior to surgery, which was scheduled for the following week.
My sister Chryssie and her husband Bill arrived from Virginia two days prior to my surgery to help out. This was her third trip to California since January and her company was both physically and emotionally restorative. I knew that during surgery, I would have two drains sutured under my armpit to allow excess blood and other fluids out of my body. These drains have reservoirs that look slightly like the end of a turkey basting device and need to be emptied at least three times a day. There was no way my husband nor I felt we could handle this procedure. Chryssie was the perfect candidate; she’d missed her calling as a doctor. My oldest sister, Cele, also of Virginia, offered to come out and assist us, but I felt too many people in the house might be more of a hindrance rather than a help. I thanked Cele profusely and explained my feelings about the situation. I hoped that she understood and in a moment of vulnerability, I believed that she did and that she had no hidden agenda. There’s a whole other story here of the dysfunctional family genre that could be told. Could, but most likely will not.
Although we lived with our Dad, Chryssie had practically raised me and we had survived many traumatic experiences together. We were soul mates. I knew her parenting and doctoring skills. Cele had chosen to return to Virginia to live with our Mother when Cele was 13, Chryssie was 10 and I was six years old. Cele and I didn’t know each other all that well.
The day before surgery was my husband Gil’s birthday and needless to say it was not up to our standard of celebration, but we did acknowledge the date with presents and a cake. We also had commemorated Gil’s birthday the night before with a dinner out and attendance at a reading of one of our friend Mark’s screenplays. The night before surgery, the anesthesiologist called to check in, inquiring if I had any allergies and informing me that the EKG had revealed a blocked local branch in my heart’s electrical system. I informed him of my allergy to shellfish (thought to be the Iodine contained therein) and my vomiting reaction to anesthesia when I was 15 when I had my tonsils removed. He assured me anesthesia had improved in the past 40 years, he would not use Iodine and we would proceed, ignoring the blocked branch. We were to meet at the surgery center at 9:00 a.m. for my modified radical mastectomy and portacath implant. I was in a nervous snit all evening and my mood did not improve after a night of fitful sleep.
Tip #15: You are the patient and need to make decisions that are comfortable for you, even at the risk of offending others.
The Operation, the Moment of Reckoning
Inflammatory Breast Cancer had already invaded my entire right breast, which needed to be removed in order to prevent further spreading of the disease. It wasn’t a case of a specific tumor that could be removed in a lumpectomy operation. A mastectomy includes removal of lymph nodes to determine if the cancer has spread to other parts of the body. In my case, we knew prior to surgery that several lymph nodes appeared to be involved. My surgeon, Dr. Hansman, informed me that he would take out a minimal number of lymph nodes, “an armpit packet,” as opposed to a huge number that many surgeons removed. The nodes would tell a pathologist all he/she would need to know without creating any further undue hardship for me, which could occur with the removal of many nodes. It’s called lymphedema, which I discuss below.
The four of us trooped into Sutter Memorial Surgery Center with my overnight bag in tow, which included items of clothing thoughtfully provided by my Mother, also a resident of Virginia. I had worried that I would not be able to raise my arm over my head for a while and suggested to Mother that large, loose cotton shirts with Velcro front openings would be most helpful. However, I had never seen such an article of clothing and had searched for said item for my stepmother who suffered from rheumatoid arthritis. I envisioned specifically Velcro because buttons, snaps and zippers seemed to offer up a host of uncomfortable possibilities for a stomach sleeper like me.
Little did I know that the very first thing, and I mean the same day as surgery, Dr. Hansman would instruct me to perform arm-raising exercises in order to ward off the potential of lymphedema, a painful and debilitating swelling of an arm or leg. According to The National Lymphedema Network (www.lymphnet.org), lymphedema can develop immediately post-operatively, or weeks, months, even, years later. If lymph nodes are removed, there is always a risk of developing lymphedema. It can also develop when chemotherapy is administered to the already affected area, the side on which the surgery was performed. That is why that arm should not be used for blood draws, blood pressure tests or any other procedures. The University of Texas M.D. Anderson Cancer Center (www.mdanderson.org) describes lymphedema “as a collection of protein-rich lymphatic fluid, usually in the arm or leg. It is caused by interruption of normal lymphatic flow often due to surgery, radiation, infection or trauma. It is the protein the fluid that makes it difficult to treat. The protein acts as a magnet for more swelling and serves as a food source for infections.”
My ingenuous Mother created several garments as I had imagined them by buying men’s 3X Large, vee-neck tee shirts, slicing them down the front and sewing strips of Velcro covered in cute fabric, which matched the oversized pockets she fastened to the outside. On me, the shirts fit like sleep shirts, hitting me about the kneecaps. They were terrific! Perfection would have been to put the pockets on the inside in order to hold the drain reservoirs, because they need to be pinned to whatever you are wearing so as not dangle, thus dragging on your skin. I told my surgeon about my Mother’s creations, and he thought they sounded like the best thing since sliced bread. Mother and I thought about a patent.
The anxiety leading up to major surgery is almost worse than the operation itself. Looking back, I should have asked my surgeon for permission to down a substantial dose of Valium or other mind-numbing drug on the way to the hospital. By the time we dispensed with the preliminaries and I was on a gurney waiting for an IV to be inserted, I was a bubbling caldron of raw terror. My teeth were chattering, my heart felt like it was about to explode and I was convinced I would hyperventilate my way into oblivion, eliminating the need for anesthesia. My surgeon popped in to say hi. He looked even younger than his early 30-something years with his backpack and in his street attire, but his unrelenting confidence was reassuring. I had thought that I would be big and brave about this whole thing, but when my husband and sister came in to hold my hand, my eyes started leaking and my emotions were frothing at the surface. My tears were for what, I asked myself? I would be asleep soon, wouldn’t feel a thing and would still have my life. As was the case with losing my hair, I was less concerned about losing my breast than I was about saving my life. Such a deal. Then it hit me: I was terrified of not waking up! How would I know? How irrational was that?
When I did emerge from the anesthesia, it was to the news from my husband that:
This all sounded good until my head cleared and I realized what it meant potentially for there to be “a little bit of cancer” in my lymph nodes. There had been a trace of cancer cells in my spine at the beginning of this saga. Dr. Hansman paid a visit and reiterated what my husband had told me, and reminded me that the pathology report would provide us with more concrete information.
My first memories of pain associated with the operation were not from the surgical site itself, but from my shoulder blades. What had they done? Stretched me on rack like a medieval torture? My portacath had been implanted under my left collarbone which was a bit sore, and the drainage tubes hanging from my right armpit were no picnic, either. I was provided a breathing tube thingy that I was to breathe into regularly, forcing a little ball to in it to float upwards as far as I could muster in order to keep my lungs inflated. That was a challenge, given my extreme state of exhaustion. My right chest and arm were propped up with wads of bandages, and my right armpit was numb where my surgeon had reached up under my skin to snag the lymph nodes, along with some major nerves. I had been warned that sensation in and around that area might never return. It has not.
I was slated for one overnight stay in the hospital, but judging by the way I felt, I doubted the veracity of that projection. Dr. Hansman had told me that if he deemed it necessary, I would be staying longer and he would deal with my insurance carrier. Normally, mastectomies are one-night stands, and I’ve learned that the issue is not the insurance companies being mean, but a matter of avoiding infection. Hospitals are infectious places. The longer you linger, the more vulnerable you are to catching something. Dr. Hansman checked on me the next morning and declared that I was unfit to return home. I agreed whole-heartedly, but he wasn’t giving me a free pass. In exchange for his largesse, he showed me how to execute an exercise, called “wall reaching,” which was intended to increase the mobility in my right shoulder. This involved getting out of bed feeling very shaky, facing a wall and working my arms as far as I could reach up the wall without overstretching. I was to repeat this as many times as possible in order to maintain flexibility and ward off the feared lymphedema. Dr. Hansman removed the bandages from the surgery site to reveal hidden sutures called “Steristrips.” He obviously was pleased with his work, as he declared my barely-there scar to be a work of art.
I was to be discharged the next day on one condition. Dr. Hansman needed a blood sample to make sure my counts were suitable. It was too soon to use my newly installed portacath, which meant that someone had to find a working vein. I waited with dread as a technician was dispatched to perform the undoable deed. Within short order it became alarmingly clear that my veins were refusing to cooperate, as usual, and I commenced my oft-repeated begging. Please find someone who is experienced with drawing blood from a turnip. Word came back via the nurses that I wasn’t being released until my doctor had his blood, and I retorted that I believed it was the surgery center’s job to find someone competent for the job. Meanwhile, my family was on its way to retrieve me and the blood draw haggling was continuing unabated. The center must have put out an emergency alert because eventually a pediatric nurse showed up (made sense, I was in the Sutter Maternity and Surgery Center) who delicately inspected my left arm for about ten minutes before announcing that she thought she’d found a good vein. Then, with a pediatric needle and the precision of an artist, she got the sample. A cheer went up from my doorway, where a small crowd of hospital staff had gathered to witness the miracle; only it wasn’t the miracle of birth.
Before we left the hospital, a nurse instructed my sister Chryssie and me on how to empty my drainage tubes three times a day, and I was given descriptions of post-mastectomy exercises to perform. I traveled home in a snap-front robe with matching slippers thoughtfully provided by my Mother. Even though I needed to keep my right arm moving, I was grateful to not have to pull anything over my head with any frequency just yet.
Upon my arrival home, the four of us fell into a fairly easy post-op routine. I had been nervous about where I was going to sleep for fear my husband might inadvertently throw an arm over my surgery side. We also have two high-energy American Eskimo dogs, Mozart and Shubert. Shubert sleeps on our bed and I was concerned that man and beast might prove to be too much for a recovering surgical patient, but I couldn’t bear to be without any of them, so we gave it a try, with no problems.
While the activity surrounding my surgery was going on, we still had to deal with my father’s death. We had scheduled the burial of his ashes for when Chryssie would be here and she and Bill traveled to Cambria for that ceremony on April 29. It was Bill’s 68th birthday. I felt okay not being there, as I had been able to cradle his remains in my arms during my trip to Cambria earlier in April. I felt it was important for Chryssie to have the same sort of opportunity to say goodbye to our Dad. Together, we would celebrate his life at the pending memorial service in June.
After four days of observing Chryssie emptying my drainage tubes, I felt confident that I could handle it by myself while she was in Cambria. I did so with aplomb for two days and when I reported to my doctor that the fluid had receded to less than 10ml in each drain, we made an appointment to have them removed. What a relief that was! Not only were the bouncing balls no longer hanging from my armpit, but I now felt more comfortable taking a shower, which would have been a treat but for the numbness in my right chest and adjacent areas. The post operative instructions declared that taking a shower was perfectly permissible, providing one did not get the drainage tubes wet. Yeah, right. Sponge baths worked just fine, thank you very much.
Chryssie and Bill returned to Virginia on May 2, vowing to return June 2 to attend our Dad’s memorial service scheduled for June 4.
Tip #16: Treatment is a very personal matter. I had few options as to whether or not to undergo a mastectomy; but every case is different. Some women choose no surgery or no chemo and others go to the extreme of having a double mastectomy to circumvent cancer occurrence in the other breast.
Pathology Report Dictates Next Round of Treatment
As promised, my pathology report found its way to my doctors on April 26 and confirmed the initial surgical observations and revealed a plethora of other information. While the report is all but impossible for a layperson to understand, it does provide answers to these salient questions, which I borrowed from a handy booklet, entitled, “Your Guide to the Breast Cancer Pathology Report,” developed by www.breastcancer.org:
Dr. Hansman had already informed us that all six lymph nodes he removed contained cancer cells, that the margins were clear (albeit extremely close according to the report) and we already knew that Inflammatory Breast Cancer is an aggressive cancer. It is a Stage III out of a possible five stages. “Staging” determines your treatment options. We also learned that “there was not a dominant mass lesion, rather single cells and small clusters of cells infiltrating throughout the breast tissue,” i.e., my entire breast was cancerous. My report also revealed that my cancer was not hormone receptive, so that using my own hormones as part of treatment or the medication, Tamoxifn that helps stave off reoccurrence, was not an option for me. We also gleaned from the report that my cancer was HER-2 positive, which meant that my cells were dividing at a faster rate than most people’s, which also makes for a fast-growing cancer.
When we met again with my oncologist, Dr. Alexander, he was very worried and expressed “grave concern” about the lymph nodes. Not exactly encouraging news. We needed to begin a six month chemo regimen as soon as my body could take it, which we estimated to be May 14, three weeks after my surgery. Following chemo, we would embark upon a 30-day radiation period around the surgical site to ensure that no cells had spread outside of the breast area. By my estimation, we would be finished with all this ugly business by the end of 2004, about a year after we started.
Her2 Positive, Herceptin and Heart Failure
Quoting from a Genentech brochure, “HER2, which stands for Human Epidermal growth factor Receptor is found in every cell of the human body. Its purpose is to help a cell divide. Each healthy breast cell contains two copies of the HER2 gene, which contribute to normal cell function. If something goes wrong, it can cause too many copies of a certain gene to appear. If extra copies of the HER2 gene appear in a cell, the gene can cause too many HER2 proteins (receptors) to appear on the cell surface, resulting in HER2 protein over expression. Cancers that over express the HER2 protein grow and spread more rapidly. The Genentech drug Herceptin binds to the HER2 protein receptors on the surface of cancer cells, limiting the cancer cell’s ability to continue to grow and divide. Herceptin identifies abnormal cells and may then direct the body’s immune system to destroy the cell.” (Additional information may be found at www.herceptin.com.) Unfortunately, Herceptin is associated with congestive heart failure, so my heart functionality would be monitored very closely during the time I would be using Herceptin. My new regimen was to be weekly infusions of two chemo drugs, Taxol and carbo-platinum, combined with Herceptin for six months. Following completion of this new treatment plan, I was to be on Herceptin-only every three weeks, for a triple dosage, for an indeterminate period of time.
We started the new treatment with high hopes. After all, the current chemo drugs were not as toxic, my hair would grow back and I looked forward to resuming a quasi-normal life. However, my bone marrow, where one’s blood cells are manufactured, were not cooperating. I was extremely anemic and my white cells were way too low, again. So we embarked upon a plan of daily shots to stimulate creation of blood cells. First, though, we needed to verify with our insurance carrier that reimbursement was not going to be a problem. That’s when my “attitude” reared its ugly head as I defiantly announced to Dr. Alexander that I would pay for said shots myself, if need be. He indicated that my gesture, while heroic, was probably impracticable, because the shots cost $1,000—each! Yeah, that could be a problem. Insurance came through, though, and we continued the bumpy ride of chemo Fridays, sometimes with all drugs present, other times with Herceptin-only when my blood counts were too low. My portacath, newly implanted under my left collarbone, worked like a dream and I heartily recommend it for anyone with bad veins in the need of chemo treatments. The portacath can be inserted under local anesthetic and looks a bit like a rubber stopper with tubing attached that goes into a major vein. I plaster numbing cream over the portacath area one hour prior to each chemo treatment, which renders the long needle used to access the device harmless. I never feel the needle.
Tip #17: Pathology reports tell a lot about your particular type of cancer. Obtain a copy, along with any other reports that relate to your situation. It helps to know what you are up against, especially if you relocate or your cancer comes back. You will have a record of previous treatment.
Gil and I were exhausted, but we still had the wrap up the details concerning my Dad’s death, like the sale of his house and his Memorial Service. My sister, Chryssie and Bill, bless their hearts, returned in June, as promised for the service and to help us sort through the house in order to get it ready for sale.
Accepting the Things I Cannot Change
By June 2004, I had accepted the fact that I had cancer and that I had lost my Dad. That didn’t mean I had to like either fact, however. We were determined to beat the crap out of the cancer and were equally determined to celebrate Dad’s life to the fullest at his Memorial Service. As to the latter, he had planned out most of the details with his pastor and us during his final weeks, so we knew what music was to be played and who was to do what. The service was held Saturday, June 5, at 1:30 p.m. at his church, St. Paul’s Episcopal, to an overflowing crowd. It was, quite literally, standing room only. Adding to the upbeat spirit of the proceedings was the architectural design of the church—bright, airy with lots of windows revealing panoramic views of the beautiful Cambria hills. In addition to his many friends and fellow parishioners, Dad’s best friend’s wife (and my California surrogate Mother) Jane and her son Stuart and her daughter Elise attended from San Jose, CA. Sadly, Jane’s husband, Ivor, had died of cancer in December 2003, just as I was preparing for my first chemo treatments. Jane also had a mastectomy in addition to major heart problems while Ivor was dying. She and I are kindred souls. Stuart, Elise and I had been childhood friends and their presence, along with Jane, meant a great deal to me.
Also traveling from afar was my best friend from Oregon, Cynthia, whom Dad and I had helped escape from abusive foster parents when she and I were in high school. In her tear-producing tribute to him, Cynthia said that Dad was the first person she ever loved and trusted. My other best friend from high school, Pam, was unable to make it. She, like all my friends, was close to my Dad. Pam was diagnosed with breast cancer in 2005.
Chryssie and I both delivered eulogies and I read one from our Aunt GG, who is just as smart and funny as her brother. After the service, we all gathered in the church hall for a good old-fashioned lunch and story swap. Our Dad’s friends had become our friends and while there are too many to acknowledge here, I do wish to mention Fred and Amanda, who have been generous with their spiritual and practical advice. We cannot forget Anna Mae, a sweet lady, and one of several whom I believe had a crush on Dad. She has his car and swears that his spirit sits next to her whenever she drives.
As to my cancer, I decided to let it go for the occasion. For the service I had worn a light cotton kerchief to hide my baldness and a jacket to disguise the fact that under my blouse I was flat on one side. (I was still too sore from the mastectomy to get a breast prosthesis.) For the reception, I decided the hell with cancer and tossed both the scarf and the jacket. It was so liberating!
We stayed in Cambria a few more days to we could finish sorting out Dad’s house. He was a prolific artist and we cherished his artwork. We hired an estate sale specialist to dispose of everything else. The sale was held July 4 weekend and we heard from neighbors that so many people attended, even arriving early, that the volume of cars created traffic jams in the neighborhood. Everyone wanted a piece of our Dad. The sale generated a substantial portion of the funds for our donation to St. Paul’s.
Tip #18: Your friends and family love you for who you are, not for how you look. Some people believe a defiant attitude towards cancer helps a patient survive. I hope they are right.
Mom Sends Boobs
Have you ever seen a Vidalia onion cooker? I hadn’t either. So when I opened another goodie package from my Mother, I couldn’t believe what was staring back at me. Two perfectly rounded full-size “B” breasts, complete with pointy nipples, and encased in red netting. I laughed myself silly. They looked like something from a stripper’s closet. In reality, these magnificent creations are hard plastic domes that separate in the middle. You place an onion in the cooker, nuke it for a couple of minutes and presto, you have a baked onion.
I had decided against breast reconstruction for a number of reasons, although I had discussed the possibility with Dr. Hansman prior to surgery. (Just for the record, I found out in the chemo room that his patients referred to the 32-year old as “Dr. Handsome,” with all due respect and fondness, of course.) Some women choose reconstruction at the same time as their mastectomy and others wait months or years to make a decision. I decided to wait, taking one step at a time. Now that I have experienced the ordeal of major surgery, I am not interested in putting my body through any procedures that aren’t necessary to sustain my life.
The first time I started to feel vain about my appearance was while I was waiting for Gil in a grocery store. We live in a beach community and after school lets out in June, there are scads of scantily clad young women parading around. They remind me of that Rolling Stone song of yore, with the phrase, “all the girls dressed up for each other.” After watching a group enter the store, it dawned on me that I would never again be able to wear tube or spaghetti strap tops. Of course, I would never be 17 again, either, so there you have it. It seemed the better I felt physically, the more I was noticing my “deformity.” So, I was ready for my prosthesis, which I obtained from the same caring, sensitive store, The Next Step, where I had acquired my wig and other sundry cancer patient-type items. It is a perfect match and no one can tell it’s not me by looking at the outside.
June of ’04 was a busy month for us. I felt that I was out of quarantine and we resumed our social life, which included attending a 50th wedding anniversary celebration for good friends Joan and Frank. Joan and I had worked together for years, as had another friend, Pat, who had traveled from out of state to join the party. I felt especially close to Pat, as she had served as my assistant for 18 years of my 25-year tenure with one Silicon Valley company. Gil was reunited with his youngest daughter, Andria, who lives in Los Angeles, after a seven-year estrangement. We had been close when she was growing up so it was gratifying to me as a stepmother to reestablish our relationship. I felt it was important particularly now for Gil to be close to his family.
Tip #19: To reconstruct or not is a very personal decision, like choosing treatment. If you and your significant other are comfortable with not doing it, then don’t. It is your body.
Herceptin and the Cardiologist: Doctor, Get a Heart
After numerous EKGs and echocardiograms, my oncologist, Dr. Alexander, felt it was time for me to consult with an actual cardiologist. It was a disaster. The experience was so miserable that I will not divulge his name or where the meeting took place, in order to protect the guilty. Here’s how it went down.
The doctor strutted into the examination room, glared at me and inquired as to what I was doing there, along the lines of, “You are a cancer patient, not a heart patient, so why are you taking up space in my office?” I kid you not. He did not bother to shake my hand, for which I was grateful when I remembered what I heard through his thin office wall. Apparently, the men’s room, or perhaps his personal men’s room was next door. I heard the normal sounds of male urination, but did not hear any water running to indicate that he had washed his hands. So much for niceties. He became more agitated by the minute as I patiently explained the heart problems associated with Herceptin, of which he had never heard. His retort was, “It sounds as though your doctor and you are depending solely on this drug for your survival. You’ve already had surgery and will be having radiation, so what’s the big deal?” Huh? I was stunned. I thought perhaps I had not communicated well about the importance of Herceptin in my treatment, so I tried again, only to be dismissed with a “I’ll research it and get back to you.” I didn’t think so. I vowed to myself right then and there that I would never again be seeing his sorry ass. In a glimpse of the obvious, I understood that I had offended the doctor by knowing something that he did not. I informed Dr. Alexander that if I needed to see a cardiologist in the future, it would not be this one. It was only the second time in my life that I could remember having such a negative reaction to another human being. In my former life as a marketing communications/investor relations executive, I had dealt with many different personality types, had “relationships” with literally thousands of people. I could not remember being on the receiving end of this much animosity.
Tip #20: Do your research and know your stuff. You may need to educate a doctor in a field other than cancer.
Year One of Living with Cancer Concludes
Everything I have recounted thus far was written from memory and calendar entries. The passage that follows was written in real time, as it occurred, because the experience was so raw that I felt I had to pour it out as it happened. I also believed that cancer was finished with me. Not so, by a long shot.
Coming in future chapters:
© Copyright 2006 by Stephanie Day
Stitch in Time