Since beginning my breast cancer journey, I have had many people ask me different things about my illness. Some have expressed concern about offending me with their questions; others have been curious but have admitted to me their apprehension in asking. Well, I don’t mind the questions a bit. In fact, I am glad people are interested and curious. My condition and experiences, though personal, are fact, not at all unlike any of the breast cancer facts that can be found on the internet or in any library. So I figured, why not share my own personal experiences? Maybe in doing so, I can help someone else who might be facing the same thing, to help them to know what to expect, and to show them that though the tunnel is a long one, it can be conquered! And maybe describing the details of my own journey can somehow help someone else, and give them the peace I have found in fighting this disease. And, if nothing else, it will be cathartic for me. So here’s my story.
Diagnosis. I had stage-3 lobular breast cancer of my right breast. Diagnosed in July '09, my first operation was a surgical biopsy to determine how advanced the cancer was. Unfortunately, it was quite advanced, so just a week later, I underwent a modified radical mastectomy on the right side, in Aug '09. Along with my breast, 19 lymph nodes were removed -- four with cancer. A month post-mastectomy, I developed a pulmonary embolism in my right lung, attributed to the mastectomy, which landed me back in the hospital for a week. Ugh. (I think I saw a tunnel drawing me toward a light that time!)Tissue Expander/Chemo.
At the time of the mastectomy (done by a breast specialist), the plastic surgeon was also in the operating room and implanted a "tissue expander," to act as sort of a place holder for when an actual implant would eventually go in. Every two weeks post-mastectomy, I would go to the plastic surgeon's office for "fills." There was a port in the tissue expander in which they would insert a needle and pump in saline, to stretch the expander (as well as what little was left of my skin), larger and larger. Simultaneously, I went through 16 weeks of chemo (totally the pits).
Radiation. A couple of months after chemo ended, I underwent 26 rounds of radiation, five days a week. Unfortunately, radiation treatments left my skin hard and leathery (not to mention, burned the bee-jeebers out of me), and actually shrunk my skin, undoing everything the tissue expander had done. This meant I was unable to have a simpler implant reconstructive surgery (in which the tissue expander would be replaced with an implant). There just wasn't enough skin to work with. Instead, I had to have latissimus flap surgery (Aug ’10), in which skin was taken from my back, pulled to the front through a “tunnel” to my chest, and that patch of skin placed on my chest to house an implant and fashion a breast. After that (Dec ’10), the healthy, left breast had to be lifted and reduced, to better match my new, reconstructed breast. And finally, a nipple had to be put on, which was the latest surgery I had just last week. When that heals, in 3-4 months, the plastic surgeon will tattoo on color, to fashion an areola. What a process! All in all, by the time the tattoo is applied, it will have been a two-year journey – a journey to hell and back! But … I’m alive! THANK YOU, LORD JESUS!
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Women who go through all of this often don’t tell the whole story, for their own understandable reasons. It is such a personal journey, and every woman handles it in her own way. But as for me, I don’t mind at all sharing my experience. If it can help someone to understand another’s journey, or to prepare someone for their own impending journey as to what to expect, then it makes my own experience not in vein.
As they say, early diagnosis is key. I was not diagnosed early, and in fact, was at first misdiagnosed. Yet, I knew for a long, long time before even going to the doctor at all, that I was quite ill, and that I had breast cancer. But I never breathed a word of that to anyone, not even Larry. I held my secret for nearly a year. Why I didn’t pursue treatment earlier is a story for another time and place. What matters though, is that I finally did go to the doctor, and after a misdiagnosis, was ultimately diagnosed accurately. And here we are.
The New Normal. It is definitely a different life for me now. I will never have feeling in the right breast area again, nor on the right side of my back or my right armpit. And though numb, I still feel the pressure and foreignness of the implant in my chest. My right-hand fingertips permanently have little feeling either, due to the strong chemo treatments. I have lost strength and mobility in my right arm. And I have gained a whopping 50 pounds because of my treatments and the steroids in them. I will be on a drug called Arimidex for five years now (also a weight-inducer), to hopefully keep the cancer from returning (one year down; four to go!). It is a harsh drug that I liken to an oral chemo, because it makes me feel crummy all the time (joint pain, fatigue). But, it doesn’t cause hair loss, so that’s a plus! I am so enjoying having hair again, even though it’s now silver, and still in a shorter style than I had before! (It’s still trying to grow out.) And naps, well, they’re the order of the day now! I still tire pretty easily and pretty quickly.
I have developed a slight case of lymphedema in my right arm too, as a result of so many of my lymph nodes being removed on that side. This causes regular swelling in my hand. Rehab taught me how to do stretches, massages, and exercises to keep the swelling at bay, and I wear a compression glove on bad days. And now, I also wear a medical alert bracelet (like so many other senior citizens!) to warn against using any needles or blood pressure apparatus on my right arm. Doing so would worsen the lymphedema.
The Dreams. To this day, I have recurring dreams of my breast lying on a stainless steel table in a sterile operating room at Beaumont. The dream continues as my breast is transported in a cooler to a lab someplace, to be picked through and prodded on and examined through a microscope to clarify the diagnosis. Ugh. This vision appears even when awake, each time I pass -- or visit -- the hospital in my travels. A subconscious part of me wonders if my breast is still in there someplace.
Pink. Many have noticed that every day, I wear one of a variety of pink-ribbon jewelry I’ve acquired along the way. Whether these things have been gifts, or whether I’ve bought them myself, to wear them means that someone, somewhere has donated to breast cancer research in purchasing that item. If not for such research, I may not be here. So I wear my pink every single day. Thank God for such research, and to the thousands who give so much of themselves to promote such research.
Support. I will never underestimate or take for granted the overwhelming value of support! For loved ones to ask how I’m doing, to be concerned and cheer me on, has not gone without my deepest gratitude! A simple, “How are you feeling?” has gone MILES in my continuing recovery. A “like” on my Facebook posts goes such a long way when I have good news to report. The hugs of a grandchild (“I wuv you, gwama”), the loyalty of one of my dogs in particular, who never left my bedside (my pitbull, Paisley), the presence of family and friends as I struggled through this mess … I get emotional and misty-eyed each time I think about it. I am so humbled. My sister, my shadow through every major procedure, holding my hand as chemo pumped into my veins, researching, and looking for answers, gosh, how do you ever thank someone for that? My sons, scared though they were, somehow always mustering the courage to reverse the roles and reassure me I’d be okay. Such a burden for young shoulders to carry! And then there has been my devoted husband. Oh my gosh, Larry. My angel, my strength, my caregiver. He never once left my side. He has been at every doctor appointment (and there have been too many to count now). Larry has been at my side through every treatment, every procedure, every surgery, every tear, every nightmare. One time, when trying to come out of anesthesia, I saw him weeping in the shadows at my bedside. And if you know my Larry, you know tears are not regular fare for him. Managing the multiple weekly appointments for the last year-and-a-half has been a job in itself, as has been interfacing regularly with the insurance company. But Larry has done it all. From changing dressings, to emptying blood-filled bulbs, to setting alarms through the night to make sure he’d give me my meds at the right times, to insisting I’d be okay when I’d cry (often). From cooking and cleaning and laundry and shuttling, protecting and shielding, Larry’s been there. How blessed am I? SOOOOO BLESSED!!
Prognosis. Well, who knows. Each time I ask, the only answer is, “we’re doing all we can.” My cancer was pretty advanced, which makes the chances of it returning greater, of course. But the other side of the coin is that there are worse cases. I met one lady on my journey (she was on the same chemo and radiation schedule as me, so we saw each other often) whose breast cancer was inflammatory, the worst kind. My prognosis is better than hers, but not as good as many other women I met along the way. I have met so many brave women on my journey, as well as reconnected with a dear, old friend who also had a recent bout with this beast. She and I have really bonded again as a result of this experience, and have attended a support group together. I am so thankful for her friendship! She has been a constant source of inspiration and example of courage, and has also been at my bedside as well, God bless her. In our support group was a very young girl, probably in her mid- to late 20s; a beautiful girl. So often while sharing our experiences, she would refer to her mom, and how worried her mom was about her. And I couldn’t help but relate to her poor mother, who must be just beside herself with fear over her precious daughter. And it was with that observation that I decided that in the big, grand scheme of things, from the big golden book from which destinies are plotted, I would take my cancer again and again, if it would somehow keep someone’s young precious daughter from getting it instead. Sigh.
Lessons. I would never want this disease to recur; although with my prognosis, recurrence is likely. However, I do feel blessed in a way, that this happened to me. I have learned so much. I have learned the value of family and friendship. And of laughter and tears, too. I know that sounds corny, but it’s true. I learned it’s okay to be afraid. And to cry. And I’ve learned that laughter throughout this process is not only okay, when you can muster it, but actually fortifies one’s physical strength, in letting this beast know you’re laughing in its face. Old friendships have been revived, and new ones made. My faith has been strengthened, renewed and enriched. And because of that unshakable faith, I know that, no matter how this comes out, in the end, I’ll be okay. I’ll be just fine.
Debbie
