I remember the day we met. My husband and I sat in the small windowless conference room, scanning the posters about breast cancer treatment plastered all over the walls. After 30 years of mammograms, this was my first callback. I was told that everyone was given the results in person, good or bad.
Then you walked into the room with 2 nurses, who were carrying tote bags full of goodies. I glanced at my husband. We knew that you were not bringing lovely “parting gifts” because I was healthy.
You said, “You have breast cancer, but you are going to be okay.” I guess our silence and blank stares startled you. You see, this was not my first rodeo; I’ve been through this before. You assured us that the cancer was not aggressive, and surgery and radiation was all that was needed.
My mind started to backtrack to 1996, when a large goiter grew on the left side of my neck. A needle biopsy showed it was thyroid cancer. Surgery removed the thyroid gland and 3 lymph nodes, and I was done. I sounded like Jack Klugman for a month, and it took 4 years to get my medication under control. I had no energy, and 2 speeds: slow and stop. My body decided to add 50 lbs.
Six months later, I noticed blood dripping from my rectum. I had my first colonoscopy, which came with color photos, and you could see the angry brown spot in my colon. Cancer, they said, round 2. We scheduled surgery, and I then called my gynecologist. For years she said I should have a hysterectomy, because of fibroids. This was her chance. If they were “going in,” they may as well get it all. The day before surgery, I was told the colonoscopy showed it was precancerous. So, I can cancel the surgery? No!
I went through the prep and a sore butt and headed for surgery again. They rolled me into the operating room, and noticing the saws and large implements hanging on the wall, I started to panic. Then I saw an army of gowned and masked creatures standing along the wall.
I shrieked: “Who are all of you?” The 2 surgeons identified themselves, and the rest is history.
I woke up in the recovery room, missing 1 ovary, my uterus, and a third of my colon. I asked, where did the peanut gallery come from? I was told they were students present for observation. I don’t want to have bystanders in the operating room during my operation. If they need to learn, they could take a picture and study it later!
I spent a week in the hospital taking painkillers, but when I was sent home, I was not capable of taking care of myself. I was a divorced mother of a 20-year-old son, who, bless him, wanted to help, but there is a limit to that relationship. I went to my parents for a week, and slept a lot. After a week with my parents, I finally went home. Nothing compares to snuggling into your own bed.
Life was good. I met Paul, and we married in 1998. He was aware of my health history from the start, and he is a great partner. I’d get my neck checks and colonoscopies on a regular basis.
In 2002, the thyroid area acted up again. Several lymph nodes were cancerous, but this time I received radioactive iodine to kill the cancer. I don’t know how many lymph nodes were destroyed. I just remembered being quarantined in my house, because I was radioactive. Paul would make dinner, sit mine on the floor just inside the bedroom door, and step back so I could retrieve it. Then he returned with a chair so we could have dinner together, with me sitting in the bed, him sitting in the hallway. We always made it work, somehow.
Later that year, I had a precancerous mole removed from my upper right thigh (where the sun doesn’t shine). This is when I started counting body parts. So far, I was missing 6, but I had no accurate account of the lymph nodes that were just “nuked” with the radioactive iodine.
In 2007, my body decided to address another system: I had a transient stroke, which I didn’t expect. Heart disease is common in my family, so I shouldn’t have been surprised, but I thought I was too young for that.
Then in 2008, the thyroid area acted up again. This time, 35 lymph nodes were removed, and 2 parathyroid glands. I never heard of them before, and I had no idea what they did. Now I do. Body parts count, 43.
Other than that, I was doing well. I had sinus surgery twice to remove polyps, and another surgery to remove a fatty tumor that was sitting squarely on my shoulder muscle. Good grief, don’t I have enough fat spread around my body? Why does it have to form an irritating lump on my back? Give me a break!
After 22 years and 6 rounds of cancer, I’ve got a grip on my health. If I just keep up with the screenings, I will be ahead of the game. That includes mammograms, and for the first time in 30 years, I was called back.
I sat there with my husband, grasping his hand in mine. Then, doctor, you broke the news. Here we go again. New cancer, new body part, round 7.
Thanks to you, Doctor, I was introduced to so many fine people, all with the first name “Doctor.” There was Dr. Surgeon, with the promise of getting “clean margins.”
Then she sent me off to meet Dr. Radiation. No wait! Dr. Surgeon wasn’t done. She found a second cancer just under the skin, and I needed a “re-incision.” I never heard of that before, either.
Then I was introduced to Dr. Chemo, because the cancer was aggressive. I never do anything halfway, so why not! You cannot guess how much fun I had with “chemo brain.” I’m so grateful that my husband could translate for me.
After the chemo poisoning was finished, I was sent back to Dr. Radiation. What a joy. The daily radiation fried my skin. But I must say I enjoyed the “pajama parties” in the waiting room. All of us ladies in our cute cotton PJs showing off our scars. We laughed and enjoyed each other’s company. One woman did not wear PJs. When asked, she said she had brain cancer, no PJs needed. The rest of us felt lucky to have given our pound of flesh—they were frying her brain!
Then back again to Dr. Surgeon to take out the port. Hooray; an end at last. But wait, there’s more! I met more doctors when I was admitted to the hospital for blood clots in my lungs. New symptom, new drug. I received a blood thinner and a low-dose aspirin every day for 6 months. That I can live with.
When I was talking with Dr. Chemo, my family history came up, which is very colorful. Dad, Mom, a sister, and I had colon cancer. The other sister and I had breast cancer. Her son (age 24) and I have had thyroid cancer. Dad and I shared skin cancer (he had melanoma). This is just crazy.
But what about my son, my sisters’ kids, and the grandkids? What will be in their future? So I decided to have a genetic test. If I am informed, then I can make a plan, and try to keep the “C” under control, and stop it from running my life. Seemed like a good idea at that time.
After all I’ve been through, you’d think I’d be able to handle anything that the “C” could throw at me. So far, all the missing body parts were internal, so it was my secret. But if I had the CHEK2 mutation, that would change everything. With that mutation, the odds were high that the breast cancer would return. Still in a daze, the doctor’s confirmation of the CHEK2 mutation and his words “bilateral mastectomy” hit me hard. After all I’d gone through, you think I should lose them both?
I tried to keep calm, but I could feel the fear building inside of me. The discussion with Paul went well, but the next day he asked if I was going to consider reconstruction. That hadn’t even crossed my mind.
So we set off on a campaign to visit more doctors and gather information. Dr. Surgeon told me not to panic. We will do mammograms and scans twice a year. She sent me off to Dr. Plastic Surgeon for more information. That day, Paul and I saw more photos of breasts than either of us cares to ever see again. The clincher was that because I had blood clots and radiation, reconstruction may not be an option.
I tried to keep logic at the forefront: list the pros and cons. But there was a lot to consider. I deal with sinus issues and always have a tissue on hand. Because I am short and have a very tall dog, the tissues in my pockets are easy pickings for him, so I keep them tucked in my bra. If I lost “my girls” and didn’t need a bra, where would I keep my tissues? If I still have my big butt, would I consistently tilt backwards? One day, while walking my dog, he pulled me over, and I landed on “the girls,” and if they weren’t there, would I have broken my nose?
I decided not to make the decision about the double mastectomy until later that summer. By then I should have gathered more information to make an intelligent decision. After much research and discussion, I decided to wait.
I had pain in my abdomen, and when I talked to Dr. Surgeon, she said I should consider having the last ovary removed. She said I needed a gynecological oncologist to do the procedure. I was in the hospital only 1 day. It was an easy procedure. The next week, I had trouble breathing. I called the doctor and asked if I needed an x-ray. No, I needed a CT scan. I was told to go to the emergency department, but I said I was not going to sit there for 3 hours waiting for a test. They made an appointment for me for that evening.
I packed a bag, because somehow, I knew I was going to be admitted to the hospital. The CT scan showed clots in the lungs and left leg, so I was hospitalized for 3 days. Now I’m taking blood thinners again.
Many people ask how I can deal with all the health issues in my life. I just tackle one day at a time. Today is all we are given. I will not let “C” steal my joy and run my life.
So, Dear Doctor, I look forward to the future. I just hope that I can minimize the issues and stop losing body parts.
I just wanted to let you know that you were not forgotten, and I appreciate your input in my “C” journey. You started me on an incredible path of doctors and procedures, and I am grateful. I am still here, and still kicking, just not as high as I used to!