Living with Metastatic Breast Cancer
The View from the IVth Floor
One woman shares some hard-won wisdom from years of living with metastatic cancer—and encourages laughter along the way.
by Teri Cooper
Borrowed time—technically, that’s what I’m living on. Diagnosed a second time with Stage IV breast cancer metastases to brain, liver, lung and bones, research told me I had two years to live. Fortunately for me, new treatments and good doctors have kept me alive beyond the two years and have inspired the hope of many more. The reality is I can still get hit by a bus tomorrow regardless of my cancer diagnosis, so how has a cancer diagnosis changed my perspective?
For me cancer has been both a blessing and a curse. It has allowed me to get back to things I love, like painting, which is the most relaxing and gratifying thing I can do for myself. I also keep busy with civic groups, ballroom dancing classes, seeing friends, and writing; in other words, “living my life.” In my journey the important thing has been to focus on what I really love and to make time to do it…like traveling and eating ice cream for breakfast! Cancer has taught me what is important to me and how I want to live the rest of my life, regardless of how long it is.
I have also learned that though I haven’t chosen the journey I’m on, I can choose to share the discoveries I’ve made along the way. In some small way, these experiences may help someone else struggling to find their path.
My hair, or the lack thereof, has taught me more than I could have imagined. When I was diagnosed the first time, I started to prepare for the road ahead: I spent a fortune on a wig made of real hair only to find it hot and uncomfortable. In its place, on hot days, I would wear a scarf, and people would inevitably recognize the telltale “cancer coif.” In fact, while out shopping one day, a woman came up to me and identified herself as a fellow survivor: “I recognize that hairdo…I had that too!” She hugged me, and instantly I felt part of a sisterhood.
When I did choose to wear my wig, I found that wearing a wig is very different when you have hair and when you don’t. I found salvation from the irritation the wig caused my skin by placing paper towels between my scalp and the wig to form a cushion to the scalp and absorb the perspiration. (If paper towel manufacturers only knew how thankful I was for the help!)
And finally, having found a wig that is not uncomfortable—it’s synthetic, well-aerated, and looks very natural—people now approach me to ask where I get my hair colored or just to compliment me on my hair. I pause before I answer, but I guess it is mine since I bought it—online, of course!
Since those first days of wig shopping and hair dilemmas, I have finally lost all of my hair. The eyebrow issue was easily solved with an eyebrow pencil, but the trick was finding the eyebrow pencil with the brush attached. Penciling the brow in a shape I liked and using the brush to soften the lines created a more natural look. As for lashes, boy am I glad I had tattoo eyeliner years ago. At last count, I had about five lashes on each eye. (Adding insult to injury, when they fall out, they fall into your eye.) Arm and finally leg hair is gone too. It had seemed so unfair to have to shave my legs and armpits when I had no hair on my head. Now there is equity! On the bright side, I consider how much money I save on hair care products and hair removal.
And yes, years of teasing my husband about being bald finally caught up with me; there I was, post-chemo, with less hair than him. We now joke and say our hair color is “clear.”
Coming to terms with hair loss—and learning to laugh along the way—has been a journey in itself; coping with my prosthetic breast has provided a whole new set of lessons…and laughs. Initially, I went to get my prosthesis and the necessary bras only to end up feeling like I had missile-shaped breasts. I switched back to my regular bras after my incision healed, at first sewing a pocket in for the prosthesis.
After years of doing this I got lazy and would just place the breast in my bras, against the skin, which provided a few memorable moments, like the day I was vigorously digging a hole while gardening and saw what looked like a chicken breast in the dirt. Puzzled, I went to move it with the shovel. Thank goodness I recognized what it was before I touched it: my prosthesis had popped out unnoticed. I stood in the yard laughing at myself; I’m sure the neighbors thought I had lost my mind!
The comic moments that the prosthesis provided were joined by genuine discomfort as I tried to develop a comfortable way to “wear” my new breast. Now, though I still wear my usual bras, I have found a solution for the discomfort of the prosthesis against the skin: I buy a pair of ankle socks and put one on the side that touches the skin. For me this works—as long as I am not doing anything like digging!
Helping my family come to terms with my illness and managing the emotional aspects of this journey has not always been as easy as having a good laugh, but we’ve still managed to find our way. I am a caretaker. I find it eases my mind to look after others, and I’m calmed knowing everyone else is going to be fine. My husband and I talk frequently about cancer and mortality—fortunately for me, he is a psychologist and a good man. My son can question my husband about the cancer without feeling uncomfortable. My stepson calls regularly. I send e-mail updates to my sisters, cousins, and friends because it allows me to give the information without getting emotional. My mother died of AML a few years ago, and my father is a cancer survivor and shows me every day how important it is to enjoy your life. Both have provided good models not only in how to live but in how to say goodbye. Ultimately, I have my faith, and I feel immense support from friends and loved ones.
Managing my hair loss and my prosthetic breast has provided me with just a few of the discoveries I’ve made on this journey, and knowing that my loved ones are taken care of has given me peace at home. The view from the IVth floor is not always pretty, but I hope by sharing what I see, I can help others and maybe share a laugh along the way. There is still joy and hope in my life, and I wish the same thing for all of my fellow survivors.
Outside the Box of a Metastatic Cancer Diagnosis
Remembering that there are exceptions to every rule keeps hope alive in the face of Stage IV breast cancer.
By Diana Price
When Kaillee Perry was diagnosed with Stage IV breast cancer at 34, it wasn’t the first time she would have to hear a dire prognosis—and then make up her mind to beat it. When she was 13, Kaillee suffered a head injury that caved in one side of her skull (to this day she has no bone there) and caused the treating physician in the emergency room to read her a laundry list of things she would never be able to do again. “Well,” says Kaillee, describing the fighting spirit that refused the grim forecast, “I’ve done every one of those things—with the exception of scuba diving—at least twice. There were so many things they told me that I couldn’t do; I think I lived to spite that doctor.”
Now, facing another tough road when an initial Stage IIB diagnosis of breast cancer metastasized to her liver, lungs, and brain, Kaillee warned her oncologist that she might just be around a while this time, too. In this case, however, she had a supportive doctor on her side as she came to terms with her Stage IV diagnosis: statistics are not set in stone, and there’s no one-size-fits-all strategy here, he told her; every case is different, and everybody responds differently to treatment.
Kaillee respected this response, noting, “In my life I’ve found that more often than not I’m the exception to the rule, whether that works in my favor or not.”
In Kaillee’s family, cancer has appeared often enough that she was aware that it was a possibility. Her maternal grandmother and two aunts were all diagnosed with breast cancer; her father passed away at age 33 from testicular cancer that had metastasized to his kidney and lung before being properly diagnosed; and she has a cousin who currently has thyroid cancer. But again, she was the exception to the pattern where breast cancer was concerned: she was diagnosed 20 years earlier than the other women in her family.
With her initial diagnosis, she says, she felt that “my body was acting funny” as early as two years before she went to the doctor; but at the time she thought that the symptoms she was experiencing were perhaps early signs of menopause (although at 30 she knew that was strange). She felt a lump in her breast, but she thought that it didn’t feel like a cancer lump should—it was soft and more fleshy than she thought was “normal” for cancer, and she figured it might be a cyst similar to those that an aunt had had removed. In addition, she had recently seen her doctor and had not raised any red flags.
By the time she was diagnosed, in January 2003, she had a tumor the size of a robin’s egg and lymph node involvement. Now, she says, she urges women to go to the doctor early. “If it doesn’t feel like a cancer ‘should,’ it doesn’t mean it’s not a cancer,” she cautions. “If you’ve got a lump in there—even if it’s soft—or if you even feel like something is just off, get it checked out.”
Because of her youth and the advanced stage of her cancer, Kaillee’s treatment plan was intense from the beginning. The dose-dense chemotherapy that she endured made her extremely ill and was followed by a mastectomy, reconstruction, and radiation. The process, Kaillee says, was overwhelming and confusing. “There’s nobody there to guide you after you leave your oncologist,” she says, “and we were at a bit of a loss.”
To add to the trauma, the first reconstruction was not done correctly, and she ultimately had to undergo a second surgery to repair it. Here too she cautions other women to listen to their instincts and be proactive: “There were warning signs there,” she says, hints that the reconstruction plan was not going well and that the doctor was not as qualified as he should have been. “He didn’t have photos to show of previous surgery results,” Kaillee says, thinking of the signs that in retrospect may have tipped her off. “He took weeks to return calls; his waiting room was always overly crowded, which I though meant he was good but which I think actually probably meant he was burning the candle at both ends and couldn’t really fully assess a patient’s history properly before making recommendations. But at the time I just didn’t know what to look for.”
Following her treatment and reconstruction ordeal, and after making the decision with her doctor to stop the series of Lupron® (leuprolide) shots because they were causing her too much pain, Kaillee had a brief period of respite. Brief, it turns out, because by summer her blood count was off, although it would take several months to determine where the cancer had metastasized. By October doctors found a few spots on her liver and one on her lung. Kaillee recalls her initial hopefulness—as she told her doctors, “Oh, great, you caught them early; it’s Stage I, right?”—and then the disappointment and the regrouping that followed the doctor’s explanation of metastases and the fact that this was actually a Stage IV breast cancer diagnosis.
Doctors prescribed Herceptin® (trastuzumab), which had a positive effect on her liver right away—two spots went away, and one shrunk considerably. The spot on her lung, however, was not affected and in fact grew a bit after nearly a year on Herceptin. It was biopsied to determine if it was a separate cancer but was found to be of the same origin. It was while Kaillee was in for a CT scan to further investigate her lung that shadows were detected at the base of her skull.
It was back to the drawing board. Facing an entirely new treatment plan, from the beginning Kaillee was clear about her priorities for this new challenge. She would pursue treatment, but she would also focus on her family—including her husband, Rich, and her sons, Pat and Devin—and take the time to enjoy her life. She and Rich decided to take out a life insurance line of credit offered by Fifth Season Financial, a process that they say was made extremely easy and taken care of quickly by the company, as they planned Kaillee’s treatment and thought about how they would like to proceed. With the funds from Fifth Season, the family brought over relatives from England for a family vacation and were also able to buy their elder son Pat the car he needed to commute to work, which they presented to him on his nineteenth birthday. Life was made a little sweeter and easier as they looked down the road toward the treatment that lay ahead.
This time what lay ahead was full brain radiation followed by an oral chemotherapy plan and Tykerb® (lapatinib). And though she was ready to begin this next stage, Kaillee was determined to enjoy her family vacation before embarking on the journey before her. “I plan for the worst, but I don’t lay down to it or live in constant fear of it either,” Kaillee says, referring to her diagnosis with metastatic disease and the many challenges she has encountered already. “There’s still a good fight in me yet.”
The fighting spirit that Kaillee has demonstrated throughout her life—from the childhood injury that she refused to let sideline her to the challenges of her metastatic diagnosis today—is bolstered by the inspiring advances being made in breast cancer research. Her transition from Herceptin to Tykerb, she says, demonstrates the speed at which research is accommodating cases like hers. “Herceptin was just in time for me, and I had very little trouble with it for 15 months; and now Tykerb, which works by breaking through the blood-brain barrier, is helping me along at this stage. There is new stuff happening every day, and they are getting closer to a cure.”
Ultimately, Kaillee says, she encourages women who are delivered a metastatic diagnosis to remain hopeful and to think outside the box. “It’s not that cut and dried,” she says of the statistics about Stage IV disease that they might be handed. “Don’t read too much into it. It’s a very good guideline, but if you buy into it as is, you’ve already lost the fight.” Powerful words, spoken directly from the front lines.
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