Today is my 54th birthday. I started this blog 4 years ago, shortly after my 50th birthday. It’s been neglected, mostly because I’m either posting boring stuff on my business blog, or I’m honing the art of drive-by snark on facebook.
A lot has happened in the last year:
We have a son-in-law.
My mother has died.
I am a cancer patient.
We’ve moved to a house by the river.
It seems like my stepdaughter’s wedding was the last week of pure fun in my life. After a week in the mountains of North Carolina, listening to the water over the rocks in the river as I baked umpteen cookies for the wedding, we had a glorious day of dancing and eating and drinking and laughing to celebrate the nuptials. We came back to Durham, and reality, through a non-stop downpour. My Dad used to say that you always want rain on the last day of vacation, because it’s much sadder to end your vacation on a beautiful day.
I returned home with the intention of focusing my attentions fully on my business for the remainder of the year. We had no more big events planned, no more vacations or out of town trips. No more distractions.
A couple of weeks later, the day before her 90th birthday, my mother landed in the hospital. That was the beginning of 5 months of ER visits, Urgent Care visits, regular doctor appointments, specialist appointments; cleaning accidents off the floor and walls of her bathroom; caring for a wound that stubbornly refused to heal, and would ultimately be her downfall; setting up services for wound care, physical therapy, household help, and medication management; buying a walker and arguing to get her to use it, arguments about her alcohol consumption, arguments about her ability to stay independent, transferring her finances to my sister’s care, and moving her from the hospital to short-term care to assisted living.
And telling her the doctor wasn’t joking when she said her leg had to be amputated.
I poured her a drink—and one for myself and one for my sister—as we absorbed that news. I emailed her primary physician and demanded to speak to him immediately about alternatives. My mother was relieved when she realized she had an alternative to amputation—hospice.
A couple of weeks later, we were sitting in the rocking chairs outside her new home, on an unseasonably warm day, as she drifted in and out of sleep, smiling as she watched the clouds and the birds. She was happy and peaceful—but not resigned to her fate. She was still determined to “prove them wrong” about the ultimate conclusion of hospice care.
Later that week I rushed to the assisted living facility when I got the call that Something Had Happened, she had fallen out of her chair and was speaking unintelligibly. She looked terrified as she struggled to be understood, struggled to understand what was happening to her. I called my sister and nephew, who were coming to visit from out of state, to tell them that they needed to accelerate their arrival times. The next morning, before they arrived, she drifted into a sleep that she would remain in for the next eight days, while we hovered nearby, talking, laughing, holding her hand, talking to her without response, watching basketball or old movies, reading books, taking breaks to go out for meals. As we sat down for a breakfast of waffles one morning we got the phone call that, despite our vigils, she had died early that morning, alone.
Then the mourning began, and the settling of the estate, the cremation, moving her belongings from both her old and new homes. Donating furniture. Searching for the key to the safe deposit box. My sister and nephew returned home. Life began to get back to normal. I worked a 40 hour week for the first time in months, then another. I did chores and made appointments that had been postponed since October.
Like my mammogram.
Wouldn’t it be a kick in the pants, I thought, after all I’ve been through in the last 6 months, if I turned out to have cancer?
Mammograms are not pleasant, but they are routine. A routine mammogram. You go, you get it, a few days later you get a letter that everything was normal and come back next year. At least that’s what usually happens, and what you hope will happen.
That didn’t happen this time.
Instead, I got a message saying that they needed me to come back for a second mammogram, and maybe an ultrasound. I called in a panic—why? What did they see? Do I have cancer?
Not to worry, she said. It’s very common to be called back for a second look. My older mammograms were done on analog equipment; their newer, digital equipment had a much clearer picture, and most of what they see turns out to be nothing. They’ll take another look at the left breast, and if necessary, do an ultrasound, just down the hall.
They took the films. They told me to go down the hall.
I could look over my shoulder and see the ulstrasound monitor. A black screen with white streaks. I didn’t see any big white blobs. That must be good, right?
Wrong. The tumor isn’t shown as a white blob, but as a dark area interrupting the white streaks. The tech was marking a vague area of negative space. “There’s something there, isn’t there?” I asked.
The moment she said “Yes” was the most brutal moment of this whole journey. The realization that there was something inside me that shouldn’t be there. The realization that I really might have cancer. She held my hand as I cried from the shock.
The oncologist came in and said something about biopsy and something something stereosomething and that the “lesion” was close to the chest wall so maybe a needle biopsy would not be appropriate blah blah but they would send the films over to the Breast Cancer Center at Duke.
And so it began.
I picked up a CD of the imaging at the hospital, and brought them to my prebiopsy appointment at Duke. The nurse practitioner could barely feel anything in my breast that seemed unusual (even knowing there was something there, I could not feel a lump). Probably just a cyst, she said. Then she took the CD to the oncologist. When she returned, she said “You have an appointment for a biopsy next Friday at 10:30.” That pattern continued: everyone was encouraging until they actually saw the films. I did not take that as a good sign.
I downloaded the files from the CD before delivering it. I had no clue what I was looking at, but at least I could read the descriptions.
There was a word I’d never seen before—”spiculated”. The lesion was about 1.1 cm at its widest, and had spiculated margins.
80% of lesions found on mammograms are benign.
80% of lesions with spiculated margins are cancer.
So it was not a big surprise when the nurse practitioner called the week following the biopsy to let me know that I had invasive breast cancer.
My husband accompanied me to my presurgical appointments—six hours at the Morris Cancer Clinic at Duke, meeting with the surgeon and the radiation oncologist, getting labs done. As we walked across the campus, I said to Barry “I can’t believe I’m a cancer patient.”
The good news was that the tumor was small. In addition to removing the tumor, the surgeon would remove a bit of tissue around it to make sure there was nothing else nearby. In addition to that incision, I would have an incision near my armpit to remove some lymph nodes to see if any cancer cells had spread there. If they had, there was more of a chance that the cancer had metastasized. As long as the tumor margins and the lymph nodes were clear of cancer, I would move on to radiation. Chemotherapy was up in the air…we’d need the results of the surgery to determine whether that was necessary or not.
I was terrified of surgery. The only surgery I’d ever had was having my wisdom teeth removed. I didn’t know how much pain I’d be in, how long it would take to recover, if I’d appear mutilated when it was done. My fears turned out to be the worst part once again. I felt so little pain that I only took the pain killers a couple of nights to get to sleep, I was at work the next morning (albeit prone on the sofa with the laptop), and the only evidence of the surgery was two small scars. Other than some post-anaesthesia vomiting, it was a smooth ride.
The post-surgical appointment held both good news and bad. The tumor was ER/PR+ (estrogen and progesterone receptor positive), meaning it was slow-growing, and added hormonal therapy to the anti-cancer arsenal. It was HER2/neu negative, which also indicates slow tumor growth, and meant not having to get Herceptin, a type of chemotherapy. Best of all, the lymph nodes were all negative. In every case, it was the best news we could hope for.
There was one small problem, though. Although the margins of the tumor surgery were clean, they found a second tumor. This one was a very small—only a few millimeters—DCIS tumor. DCIS is ductal carcinoma in situ, and is considered precancerous: the tumor is still contained entirely within the walls of the breast duct. But should it break through the walls, it then becomes invasive breast cancer and has the capacity to metastasize.
Even though it was small and benign, the DCIS tumor required its own margins, to ensure there were no others lurking nearby. So a second surgery was scheduled. This one was even easier than the first, and the margins were clean. After a month of healing I could start radiation treatments.
During that month I also met with the medical oncologist. We briefly discussed the hormone therapy that would begin after radiation was complete. We also discussed one additional test that would determine once and for all if I needed chemo. The oncotype DX test is fairly new, and is only given to women whose tumors are small, are ER+ and have no node involvement—in other words, women who have an excellent prognosis and are presumed to have very little risk of recurrence. It examines the genetic makeup of the tumor itself to determine if, despite all the good signs, this tumor includes other factors that may make it more aggressive. The test result is summed up in a number: below a certain number, the risk of severe side effects (including leukemia) from the chemo is greater than the benefits that chemo would offer. Above, chemo is definitely recommended. In between is a gray zone.
The medical oncologist reassured me that she fully expected my test to come back indicating no need for chemotherapy, however, it was worth it to be sure. We scheduled a follow-up appointment two weeks later to discuss the results.
A week later, I was getting in the car to head to a meeting with a client when I got a call on my cell phone. The results of the oncotype test were back; could I come in right away to talk to the oncologist?
Not the call you want to get when you’re on your way to a meeting where you want to be focused and confident.
I headed over to Duke after the meeting and got the news: the oncotype test came back exactly in the center of the gray zone.
Nonetheless, the oncologist recommended that I get chemo. It’s a statistical call: the chance that chemo would keep the cancer from returning was double the chance of having severe long terms side effects.
They gave me a stack of prescriptions—a couple for nausea and vomiting, one for anxiety, even one for a wig. A couple of others—I don’t even remember now what they are for. And a stack of papers to read about the drugs they’ll be administering. I’ll have four treatments (2 hours of IV), spaced three weeks apart. The list of possible side effects is impressive. Nausea, vomiting, diarrhea, constipation, heartburn, loss of appetite, mouth sores, fatigue, bone pain, anemia, susceptibility to infection. Hair falling out, fingernails falling off. Peripheral neuropathy. Leukemia. There were pages about how to eat, what to avoid, what over-the-counter remedies to have on hand, when to call the oncology team, when to go to the ER.
To make my day complete, I started radiation therapy that night, too. The night before I’d had my “simulation”, where they figure out all the settings on the machine for your treatment. They drew all over my torso with sharpies, and covered the sharpie scribbles with clear stickers so they wouldn’t wash off. This helps them to position my body in the machine the exact same way every day; they line the marks up with lasers. I looked like the surface of the road just before they start working on the sewers. Until this week, when they started radiating a smaller area (a process known as “the boost”), I couldn’t wear a neckline lower than a t-shirt without revealing a purple scribble and sticker on my sternum.
I had hoped I’d be done with radiation by my birthday, but I will have three more treatments next week. Radiation has not been bad at all. Yes, it’s an inconvenience to have to go to the cancer clinic every evening, but I’m lucky that I live 15 minutes from a major cancer treatment center. I get to sleep in my own bed every night, not a hotel. Six weeks have flown by.
I have yet to experience the fatigue I was warned was sure to come (there’s still time…side effects last a couple of weeks after the end of treatment). My skin looks mildly sunburned, and occasionally feels a bit irritated, or I’ll get an odd pain or soreness. But nothing terrible. The radiation oncology team tells me that my skin is doing amazingly well—better than most they’ve seen. I credit that to frequent and ample applications of Aquaphor ointment.
After radiation is completed, I’ll have a treatment-free month before starting chemo. After three months of chemo, I’ll begin five years of hormonal therapy. But that’s just a pill a day. My prognosis remains excellent. I don’t fear for my mortality so much as still having a viable career after 15 months of ongoing crises.
On the good news side of this year’s big events, we are in the process of moving into our new home. On the one hand, home shopping, negotiating, mortgage qualifying, inspections and moving has only added to an already unprecedented level of stress. On the other hand, I’m thrilled to be moving to a bigger house, in a quieter neighborhood, with a trail to the Eno River a block away. I’ve wanted to move for years now. I’m looking forward to living in a house where I’ll feel at home. It will be a much better place to reside during three months of chemo treatments.
Soon, our daughter and son-in-law will move into our current house, find new jobs or start grad school here in Durham. Maybe start a family here someday. Come over for Sunday dinner and a movie like my Mom used to do.
Tonight we’ll celebrate our new home with new neighbors and old friends, shoot some pool and belly up to the bar in the house’s big rec room. There should still be enough daylight the first few hours for people to walk in the beautiful gardens on the property.
It’s a good day to celebrate new beginnings and new life. Happy birthday to me.