It began in 2004 when a mammogram detected a little bit of ductal carcinoma in situ, or DCIS, in my left breast. DCIS is considered the earliest stage of breast cancer. It’s in a category where some people don’t even want to call it cancer.
I tend to refer to it now as my ‘little bout with breast cancer,’ even though at the time, it was a big deal to me and my husband. Treatment called for a lumpectomy and radiation, but I still felt almost apologetic being called a survivor.
Then, this year, the story evolved.
On a Friday morning in February, I discovered a large mass in the other breast, the right breast.
I always figured it would come back, and I knew immediately that it was serious.
My husband was in the next room, but I waited 15 or 20 minutes to tell him. I just waited. I remember lying down on the bed thinking, ‘This is his last moment of peace.’
Finally, I called him into the bedroom and asked, “Are you ready for this whirlwind of experience we’re going to have?”
He said he was, and with that, I made the call to the doctor’s office. It was the worst sensation right then. Scheduling the appointment was confirmation that this was really happening.
The real deal
I’ve always taught my medical students that words are important because people will always remember them. And it’s true. I remember my doctor just looked at me and said, “This is the real deal.”
He was so soft spoken, so professional.
I was blessed that everything fell in place that day. I discovered the lump in the early morning, and by 10:30 a.m., I had a mammogram; by 11:30 a.m., an ultrasound; by 2 p.m., a needle-directed biopsy.
As a physician, I’ve been on the other end, in terms of not having information to give people, waiting for test results, maybe not calling back immediately, and forcing people to wait. It was just a pinprick of conscience when I realized how quickly I was getting cared for that day.
The final diagnosis was invasive ductal carcinoma, stage IIB. It’s ER/PR negative, HER2 positive (which is more than I ever cared to know about breast cancer). It’s the aggressive kind with lymph node involvement, so I’m getting everything available in terms of chemotherapy and radiation. It’s a long, long treatment.
Sharing the news
Telling my children, telling my closest girlfriend, and telling my mother … that was really hard. It was hard because you know you’re changing their lives.
In a way, it’s drawn me closer to my son and daughter, who are both adults now. Neither of them is highly extroverted. They aren’t touchy-feely kind of people, but we’ve had very special moments. I see more of my son. I get more texts. I get more phone calls.
The most difficult part was telling my mom. We lost my father to pancreatic cancer when I was 29 or 30 — the same age my kids were at the time. So it took a day or two before I could call her.
Then there was the challenge of telling all the other people. I hate to say this, but you get so darned tired of telling people the same story over and over, and keeping everyone apprised of everything!
I started a CaringBridge site, at the urging of some co-workers, but it was hard to write those things. I know for some, it’s therapeutic, but for me, it became very fatiguing and uncomfortable to think and talk about myself in that way.
Prior to my diagnosis, I was a busy family physician and academic dean, where most of what I did on a daily basis had to do with caring for others: patients, students, faculty, family members … I used to sometimes get frustrated and say, “What about me?” Suddenly everything was reversed.
There have been a lot of little low points. I remember one where we’d been to see at least one doctor that day, maybe more. It was the day we realized that, because of the aggressiveness of the cancer and the location of the nodes, that I was going to get full-blown chemo and radiation therapy, and that I might as well figure it will take a year to get through the treatments. And it would be a long time before I’d feel normal again.
There was a long pause, and then Larry nodded and said, “Yeah, you’re right.”
Then there were the chemotherapy side effects. I’ve said to a couple people, “I know I’m not dying, but I feel that this is what it must feel like to die.”
You could ask me about any part of my body and I would be able to describe something that was going on. It felt so self-absorbing, pathetic at times. I remember occasionally wanting to call my doctor to tell him that I didn’t want to do this anymore.
Strength in stability
I’ve found great strength in going to church. I keep an online journal on my iPad and have been in the habit of writing down a Bible passage or a hymn verse or something every day.
My best friend, Mary, who lives in Milwaukee, emails every day, usually quoting a scripture passage or something and will end the email with a phrase about friendship.
It’s those stable things I can count on that give me strength. I’ve had no questioning of why this has happened or any weakening of faith. The stability of that really balances out the unknowns.
Living without regrets
When I was diagnosed, I was in the middle of planning a trip with my daughter, Laura, to the French Open. It was our second tennis Grand Slam together. We hope to someday make it to all four.
When I discovered the lump in my breast, we’d already purchased airline tickets and rented an apartment in Paris.
I considered canceling the trip, but I realized it gave me something positive to look forward to. My medical team allowed me to schedule my chemotherapy so that one block got done just before I went.
Of course this was a brutal time to go. I was dealing with side effects from the drugs, had just lost my hair, experiencing a lot of fatigue and nausea, but the important thing was that there was time to go.
So we went to Paris for a week. While it was physically strenuous, I have no regrets. None whatsoever. When I stood before the actual lily pond that Claude Monet captured in his famous paintings, I felt blessed. Even when it rained, and we changed the name from the French Open to the Drench Open, it was very special mother/daughter time.
Through a doctor’s eyes
It has certainly made it easier in that I understand a lot of the information, but also harder because I understand a lot of the information.
Frankly, at the very beginning, you don’t know whether you’ll survive this. Then you get through that, and you realize, prognosis is very good. And these treatments — you do them for a reason.
I tend to be pretty private, but I have no hesitations sharing my story if it will give hope and strength to others facing this disease.
So, be strong, keep living your life, and hold onto hope. Those are the messages I want other women and their families to take to heart.
Janet Lindemann, MD, MBA, is a family physician and dean of medical student education at the Sanford School of Medicine at the University of South Dakota. She lives in Sioux Falls, S.D., with her husband, Larry, and her dog, Bob.
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