Gerrie Summers

 

Last month I celebrated a milestone — my five-year cancer-free date. I was diagnosed with triple negative breast cancer (TNBC) in September 2016 and started chemotherapy that October. Chemo lasted through March 2017, followed by radiation treatments. My final radiation treatment was at the end of April 2017. According to my oncologist, five years is the amount of time specified for being in the clear. I know that doesn't necessarily mean the cancer won't come back, but it's probable that the chemotherapy and radiation did its job and that recurrence is very small.

 

So for five years I've been trying not to focus on this, focusing instead on living, especially healthy living, which, as a bit of a sugar and junk food fiend has been difficult. All the while, that throbbing question mark was in my head.

 

One thing that troubled me while I was waiting to hit the desired five-year cancer-free mark, was that with TNBC, chemo seems to be the only surefire treatment. There were no follow-up pills or shots to make me feel like I was still doing something to prevent the cancer from returning. That's good and bad. I hate taking medications. They seem to always cause another health issue, but my mind kept drifting to thoughts of going through the whole treatment process again. It didn't help that a port was kept in my chest for two years, just in case.

 

To keep myself distracted, I started a novel through National Novel Writing Month (NaNoWriMo), an annual creative writing event in which writers attempt to write a 50,000-word novel during the month of November. The novel I worked on was actually created from outtake scenes that didn't work in a novel I started with Nano the year before. I didn't want to write about anything heavy. (It so happens a character in the original novel died from breast cancer—not exactly what I wanted to think about at the time.) I used the out-of-place, humorous scenes to build a new story. I was in the second month of chemo as I toiled to meet the 1,667 words a day, fighting the exhaustion the chemo drugs caused. It was the first time I worked on a novel to the bitter (or, rather, satisfying) end.

 

In addition to having a work-in-progress to take my mind off of cancer, I think my real saving grace was attitude. I couldn't afford to feel sorry for myself. With that in mind, I tried to be careful about who I shared this experience with. Some people can be such downers. I remember one well-meaning person told me about how a friend of hers lost both breasts to cancer (it wasn't true, it turns out—but what a thing to tell me.) So for the most part, I kept my diagnosis to myself and didn't join any cancer support groups until after chemo was over. It was a good decision for me because the triple negative group I eventually joined might have terrified me. So many of their experiences were dreadful, while I sailed through. I believe going in with an ignorance-is-bliss attitude turned out to be the right thing for me. Even though I had researched my cancer and knew what could/would happen, keeping a positive mindset definitely helped me. I had very few side effects. Every morning I did a visualization meditation from You Tube that helped me view the chemo drugs as something to help heal my cells, instead of something toxic. It also helped that my oncologist started me out slow and eased me into treatment. I continued with meditation, continued eating well, and maintained my yoga and meditation practice.

 

Getting cancer can be frightening because it reminds you of your mortality, and that life is short. Yes, it made me realize my time on earth, at least at this level, is finite, but it has helped me focus on what is important, how I spend my time, and who I spend my time with. It's made me appreciate things that I have, the people in my life, and to focus on gratitude. I'm here. I made it through. And now I'm using that same attitude with the querying process. I went through the exhausting process of rewrites and editing. I completed the novel. And now I'm waiting for another great milestone. 

I was walking toward Centre Street in Chinatown, when I heard an ambulance. The sound was getting louder and louder as it inched its way through Manhattan traffic. Of course it’s not an unusual sound to hear in Manhattan, but today it seemed to unnerve me.

Today I was on the way to see an oncologist, the first one of two medical professionals for whom I had received referrals, to discuss possible cancer treatment.

My sister and I arrived at the building and noticed that the ambulance we heard moments ago had pulled up outside. Two emergency medical technicians entered behind us and commandeered an elevator that sluggishly dragged its way down to the ground floor.

Is this a sign?

Moments later, the elevator had returned and we finally headed up to the doctor’s office. I was instantly discouraged. It was a clinic, an environment I was all too familiar with—where you find the poor, the elderly and the recently unemployed like me, with disinterested employees scarcely acknowledging patients as they enter. Uncomfortable plastic chairs faced a television transmitting a Chinese soap opera. To the side, women were seated behind a long counter their eyes trained on computer screens. In back of them were rows of over-stuffed files of medical information positioned on top of file cabinets — all of which made me wonder in what decade did this office exist?

I informed one of the women at the counter that I had an appointment and she handed me a clipboard with a form attached to it to fill out. Once completed, I settled in for what was probably going to be a very long wait.

Inside another room I could see the EMTs from before getting ready to place an elderly patient onto a stretcher. My attention returned to the waiting area when a woman two rows in front of us coughed without covering her mouth. My sister, a teacher now blissfully retired, spent years teaching adolescents to cough inside their elbows to prevent the transmission of germs, grinned at the expression of revulsion on my face. I’m thinking about the fact that chemotherapy weakens ones’ immune system. I grimaced, sighed and tried to read AM New York.

An hour or so later, an alarm sounded. No one moved. No one seemed to be paying attention to the loud, piercing sound, shrill enough to make one’s ears bleed. Finally someone deciphered the mumbling announcement and discovered that there actually was a fire two floors below. A man ushered us down a second flight of stairs because the main stairwell was already crowded.

Yes, this is a sign.

Eventually the crowd outside the building was allowed back inside to much confusion because the decrepit elevators were not yet operational. People were slowly trying to walk back to upper floors while others, including elderly and infirm using walkers, were still on their way down.

I finally got a break and sprinted all the way up to the fifth floor only to find out that the doctor had not returned and that they had no idea when or if he’d be back. Moments later I was finally sent in, only to find out that I was seeing a different doctor than planned. It was alarming that this doctor was not the physician recommended by my surgeon, but someone taking on his new clients. That was the first mistake—not informing me of this. My surgeon specifically recommended someone who would treat me at New York Presbyterian and that was affiliated with Weill Cornell, a hospital and medical facility that I had grown to trust. I had a bad feeling about this young doctor from the moment he told me that all of the doctor’s new patients were being given to him, because, the other doctor, he enlightened me, was “old” and didn’t want to take on new patients.

I had a list of questions, but felt like an idiot for even asking them. He bluntly answered the questions that I managed to ask, as if he relished giving out bad news. I relayed what little information I had been told by the surgical oncologist. “Oh, that’s bad.” He said and proceeded to basically tell me that I would have to be given the worse (i.e. aggressive) kind of chemotherapy. I had visions of myself frail, bald and excruciatingly sick. As if he had read my suddenly terrified mind, he blurted, “You’re going to lose all that beautiful hair.”

“Yes, chemo can cause cancer” he said at another point, as if I had asked the most unintelligent question in the world, mentioning leukemia and rattling off other cancers that could occur without explaining why in hell one would do chemo to kill cancer only to get cancer. He finished with the necessity of radiation treatment and that radiation could cause lung and thyroid cancer.

Okay, so he was insufferably honest. Great way to prepare a patient for chemo and radiation therapy.

After a grating examination of my breast and the surgical area (at least he said my surgeon did a good job) he ordered blood work, chemo meds and set up an appointment for a surgical procedure to have an implanted port placed inside my chest. A port is a small medical appliance implanted under the skin. It’s often described as an artificial vein through which chemo drugs can be injected and blood samples drawn with less discomfort than through needles. I can’t remember the doctor’s exact reasoning for using the port at the time, but I had visions of my veins and flesh disintegrating.

My head was spinning. I was given very little time to absorb the frightening information I was hearing. All I knew was that deep inside I thought that a doctor should not order chemo meds and surgery before a patient has agreed to be taken under his care. This feeling was confirmed by the nurse who apparently questioned, in Chinese, whether it was wise to order the chemo drugs if he was not sure I’d actually be his patient, but he waved this off.

I also learned that the chemotherapy would be done at this clinic. Would I want to have chemotherapy in such a disorganized building, where at least one nurse was having a difficult time understanding me, and I her? I asked if I would need to be driven to chemotherapy or if I could take the subway and the doctor told me that I would have to wear a mask (and I’m putting his words mildly here) because my immune system would be compromised. My writer’s imagination had me wrapped in cellophane for a year.

During the consultation, he excused himself to take a call. Judging from what I could hear, he apparently had come up with a plan of treatment for the person on the other end. “What will happen if you don’t do the treatment?” I heard him repeat. “Well, you’re going to die.”

I…was…through.

After the visit and using the restroom in that horrible building, I told my sister, “At least I won’t have to worry about my dreadlocks when I go into a public bathroom,” as there is an art to making sure your locks don’t fall into the toilet or touch a nasty, germ-contaminated floor.

“Well," my sister said, "At least you still have a sense of humor.”

That night my sister stayed up binge watching Grey’s Anatomy to decompress. That wouldn’t have been my choice - considering.

I managed to fall asleep, but in the morning, for the first time since my breast cancer diagnosis, I cried. Read More 

Fighting With Feelings

A month before I had a second surgery to have lymph nodes removed, I had a nightmare in which I was talking to an angry, mean man about a form I had filled out. Apparently I had filled it out incorrectly. He was fussing with me and I blurted out something about being distracted because I’d been diagnosed with breast cancer. He didn’t care. He continued to fuss with me and then without another word put a woman on the phone. I think she was better. I can’t remember the dream from here, except that I was taken away to someplace — to an operating room for surgery perhaps?

I woke up feeling anxious, with a nagging sense of dread. This feeling would come and go. I was trying to edit my thoughts, deleting all the morose and gloomy ones that were coming to my mind and replacing them with I am healthy. I’ll be fine. It didn’t help that in the evening, I was having a difficult time getting to sleep and staying asleep because my mind was being flooded with negative thoughts. I’d wake up due to several notions and scenes playing out in my brain. Had it spread? Chemo. Radiation. Hair loss. Will my hair fall out? Will it come back one day?

I was about to see the surgeon about the pathology report. At this time he didn’t know whether the cancer had spread to the lymph nodes. Furthermore the lab had found something on the right breast, and I would need to go in for a biopsy before the surgery, adding to the anxiety I was feeling. (Fortunately, whatever the ultrasound detected was nothing for concern.)

Still, I was relatively fine. In fact, at times I thought something was wrong with me. I hadn’t cried. I hadn’t cursed God. I might have said, “Why me?” But mostly I was just numb.

I Am Healthy. I’ll Be Fine.

During the break between surgeries, I had gone on with my usual routine. I went to an event where an intuitive (yes, really) shared an unsolicited comment that my body was healthy. Naturally thinking that she was a quack, I told her about the breast cancer diagnosis, but she didn’t back down. She insisted that she didn’t detect any illness in me. Since she had informed me that my late father was beside me and watching over me (and proved it in kind of freakish way that made me a believer)—who was I to debate her? The tumor had been removed. Later, the second surgery to remove tissue and lymph nodes showed that no further cancer was detected nor had it spread.

A little over two weeks after surgery, I paid a visit to my primary care physician and something dawned on me. I had been thinking something was wrong with me because I had been, for the most part, positive and not falling apart over the diagnosis of breast cancer. When my doctor asked me how I was feeling physically and emotionally, with an expression of concern, and I think, dismay sweeping across his face, I said “It might sound crazy, but I’m kind of calm about it.” He seemed relieved and admitted that he would have been “like this” indicating shaky hands. I gathered that he has had patients whose reactions weren’t as composed. I’ve known for a long time how emotions can negatively affect your health. I was taking the let’s-wait-and-see-how-this-goes approach.

I won’t lie, there were days after the surgery that I hated waking up. I would feel discomfort in the breast area and I was unable to look forward to the day. I felt like I had pins and needles in my arm. The underarm area was so numb, I couldn’t feel myself putting on deodorant and at times it felt like someone had a tight grip on my upper arm. There were very brief moments when I wondered why I should continue setting up lofty goals for the future, like those 15 or so novel ideas, and then I’d snap out of it.

As all of these uncomfortable sensations and pains worked toward bringing me down, calls to check up on me, a beautiful bouquet of flowers from a friend, comforting letters, cards and gestures, plus loving and caring messages on Facebook, would all work to bring my spirits back up.

Friends and family were amazed by how well I was taking this. I wasn’t acting, though. With just a few moments of woe, I was amazingly calm.

But that was not going to last. Read More 

I Missed One Mammogram

For several years, I had been very good at getting mammograms and ultrasounds on a regular basis. In the midst of health insurance confusion, I missed a mammogram — just one.

I was off insurance for six months before going in for a mammogram. I have fibrocystic breast disease that can make it difficult to exam and spot abnormalities. As usual the imaging service sent me a note suggesting that an ultrasound be done due to my dense breast tissue. An ultrasound is usually ordered but this needs a referral from the primary care physician or gynecologist. During the time off insurance, I hadn’t paid a visit to the GYN, who was the one that made sure I always had both a mammogram and ultrasound.

Then I felt a lump similar to one I had in the other breast several years ago, that had been removed and turned out to be benign. I mentioned the new lump to my primary care doctor. He examined the area and I mentioned that I had not had the usual ultrasound. He didn’t order an ultrasound, but later handed me a note scribbled on a piece of paper and told me to find an oncologist that was part of my insurance plan. I sent him an email with a list of names and numbers, heard nothing back, and got busy with daily life.

I was becoming increasingly concerned about that doctor. Let’s just say that he was approaching retirement age and seemed to be forgetting which tests he had ordered and what prescription drugs I was on. What made matters worse, he kept files the old-fashioned way - with notes scribbled on the inside of a folder that held pages of my medical reports. When he couldn’t find the last mammogram results among the jumble of papers, I knew he needed to be replaced. I decided to find a new doctor, periodically examining the breast and noticing no change.

Several months had passed and it was time to renew my health insurance plan. I made a mistake when enrolling on the health insurance marketplace and ended up without a plan again, this time at least for only three months. In the meantime, I finally found a new doctor who fortunately accepted my new plan, and instantly sent me in for an ultrasound and made a referral for me to see a surgical oncologist. Upon physical examination, the oncologist thought that the lump was probably benign. It felt like a marble and was mobile just like the other lump I had discovered in the right breast. I was cautiously optimistic.

Typically a biopsy would have been done, but just like the lump found in the right breast, it was prominent enough to remove. I had a cruise and a family reunion coming up and asked if the surgery could wait. Since it would take time to get approval for the surgery anyway, the doctor said it was fine and surgery was scheduled to happen the next month, the week following the reunion.

Meanwhile life went on — in a downward spiral. Back in April I had lost one of my outlets that provided a major source of my income, in May found out that a friend was a lot sicker than she first revealed. In July I had surgery to remove the lump. Two days after my surgery I found out my friend had died from ovarian cancer. Five days later, the surgeon called. Hearing his voice on the phone, I knew it couldn’t be good news. The pathology report showed that the tumor had malignant cells. I was told to set up an appointment and the surgeon suggested that I bring someone with me.

Deer in the Headlights

The next day my sister and I were in the doctor’s office. At some point the doctor stopped talking and glanced at the notepad and pen in my hand. I’m the type who might jot down notes during a simple phone conversation with a friend. And here I was with notepad and pen, and hadn’t jotted down a single word. He was speaking and I was just staring at him, nodding my head. That, he said, is why he wanted me to bring someone with me. My sister was beside me, diligently writing down everything he said.

“So this is a malignant tumor?” He knew what I was really asking. He nodded. “It’s cancer.”

That day was the first time I uttered the words breast cancer. As if malignant cells or malignant tumor made it any less dire or frightening. The doctor explained that I would need further surgery to remove tissue that had surrounded the tumor and lymph nodes to make sure the cancer had not spread. In addition, my ultrasound had found something on the right breast as well. I was sent in for a biopsy. Luckily nothing was found.

The second surgery was done the following month. All of the tumor was taken out, the cancer had not spread to the lymph nodes, but he said I would still need chemotherapy and radiation treatment. I was confused. If all of the cancer was gone, why would I need chemo? The surgeon explained that they wanted to make sure that no microscopic cancer cells had escaped and were circulating somewhere in my body.

Another Cautionary Tale

I was beating myself up for not going in for a mammogram and ultrasound sooner, insurance or not. But I’m not alone when it comes to waiting. After telling certain family and friends about my diagnosis, I’d hear “I’ve been meaning to get a mammogram” or “I’d better go in for a mammogram,” but the next time I spoke with them, they still hadn’t set up appointments.

We put things off to our own detriment. My late friend, who had a distrust for doctors, prescription drugs and the medical industry as a whole, held off seeing a doctor even when the stomach issues she was having worsened and she began losing weight. It was only after she collapsed and was forced to go into the emergency room that the malady was checked out. She nearly died that day. Still, it was too late and I miss her dearly. I don’t want to have to lose another loved one before their time.

You know how they say, if you see something, say something? When it comes to your health, when you feel something, do something.  Read More