- 1 November 2013
It was a year ago that I received the news that no person, whether with a breast cancer history or not, wishes to receive. Oh, I knew it was coming. One of my best friends took a day off work to be with me as I drove to my oncologist’s office for the dreaded appointment. I knew I would need emotional support. And when I saw the oncology nurse enter the examination room before the doctor did, ominously bearing a prayer shawl, I really knew my number was up.
All the warning signs were there: vomiting right after I received some great news about the sale of a house, persistent flu-like symptoms, unbearable left chest discomfort, insomnia, pain too severe to allow me to go to church, near fainting during choir rehearsal, terrible lower back pain when I sat down, and uncharacteristic shortness of breath that prevented me from walking around a beloved lake on a beautiful October day.
This is someone who had perfect attendance for four years of high school and hardly ever got colds, except when her children were small. This was a working mother who ran throughout her thirties and religiously exercised at a fitness club for almost two decades. The bubble of denial in which I encased myself, as a lady who thought she had beaten her cancer, was about to burst. So much for the well-meaning advice of others that God had cured me and I need never worry again about breast cancer. Those words probably comforted the speaker more than they reassured me.
I appreciated the oncologist’s honesty, but also his compassion. He told me the liquid in the pleural effusion (my lung sac) was malignant, with a Halloweeny pathology of HER-2 positivity. For the uninitiated, this is an aggressive type of cancer. But the good news, which the doctor was quick to point out, was that this type of cancer is treatable, though not curable. I could go to Stanford to see if I qualified for a state-0f-the-art clinical trial to treat cancers such as mine, or stay locally and get the standard treatment. I chose the cutting-edge option, intrigued by the idea of a clinical trial that could help others as well as myself, plus happy to know that the manufacturer, Genentech–not my insurance company and myself–would pay for the wonderful, but expensive, targeted therapy (Kadcyla and Perjeta) involved.
It’s been quite the road trip since that life-changing day a year ago as I staggered out of the oncologist’s exam room and into my car, with a written prescription for narcotics and a fresh appointment for a PET scan involving inserting a dye into my fragile veins. Yes, I dreaded the dyes. But I dreaded even more the prospect of discovering just how much and where the cancer had damaged my body. Frankly, the “scanxiety” frightened me out of my October gourd. The thought of entering a clinical trial also scared me, but it seemed more like an adventure than a repeat of the drill to which I was accustomed.
I’ve grown a lot in a year. I’ve learned first-hand the intense worry and then overwhelming relief when someone gets tested and then qualifies for a clinical trial. I know now what it’s like to stay in a hospital five days in a harrowing whirl of tests and narcotics. At least I had a private room with a view, thanks to my condition being labeled “acute”. I understand now what it’s like to be wheeled into the infusion room, with a bucket in my lap where I fully expected to vomit any minute from narcotics. I experienced the adventure of drugs coursing through my veins, attacking the cancer cells with a vengeance, but leaving side effects that literally chilled me to the bone. I learned the meaning of friendship as I, a skeletal shadow of my former healthy frame, stayed with a dear friend who cared for me for three months while I underwent the first phase of this drama. While it has not been easy making these oh-so-frequent trips back and forth to the treatment center, I’ve learned to make the best of it. After all, my life depends on it. Literally.
Oncology nurses vary as much in their personalities as in their skills. Some just seem to know when I need a bit more compassion. Some aren’t paying attention to clinical protocol, while others stick to the rules like an army sergeant with a large platoon. Some are what I would call an officer and a gentlewoman, exuding a reassuring mix of rules and bedside manner. Some are better than others in poking my port to access the veins and in removing the apparatus. Twice I’ve heard the strains of “Hey La, Hey La, You’re Chemo’s Done” to the tune of “My Boyfriend’s Back.” The nurses enjoy doing their choreographed version of this routine to lucky patients who will soon be walking away from all these infusion recliners and hanging bags of toxins, presumably forever. I’ll never get to witness that song and dance for myself unless the chemo isn’t working anymore. I think I’ll pass. Still I smile on. It doesn’t matter which nurse I get or which song is sung, whether a dirge or a number from a beloved musical. I’m alive! And I’m not on a deathbed.
The adventure continues as I struggle with side effects that linger on despite the arsenal of drugs I take and the walks I make. I’m such a picky eater now, and hardly ever finish my meals, as I slowly work my way through mostly unappetizing cuisine. Acupuncture doesn’t seem to do much, nor does healing touch. But social interaction is the best alternative medicine I’ve found to date.
Yesterday my dermatologist informed me that a black spot I’ve had on my face for months that I thought surely was melanoma was nothing more than a blackhead. My pain threshold is so high that I hardly flinched as she applied a pin to it and pried it off with some prodding and poking. I was just thrilled it was not another form of cancer. In a few weeks I undergo a colonoscopy, something I wouldn’t normally look forward to. But if I were headed for hospice anytime soon, my oncologist would not have recommended it. And I will clearly benefit from the new U.S. law banning insurance companies from taking pre-existing conditions into consideration as they determine premiums. Any financial break at all is a break for someone like me on limited income.
My beloved mother would have turned 92 yesterday if she were still alive. She would have been proud of how I have coped. And my Dad? I get my strength from him, as well as my heavenly Father. When my Mom and Dad were going to a restaurant, he in a wheelchair due to his amputated leg and my Mom leaning on her cane weakened by terminal lung cancer, someone asked my Dad why he and his wife were still bothering to go out for a meal. He curtly replied, “Well, I’m not just going to give up, am I?”
After a valiant struggle with recurrent infections, my Dad finally died six years ago. But his words still linger in my mind. I’m not just giving up, either. I intend to do another blog post next year on my two-year cancerversary, with equal stubbornness and verve as I have now.
Dad would want it no other way.
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