Kim, an avid runner and active community volunteer, was 40 and busy raising two kids when breast cancer derailed her life, precipitated so many changes and setting her on a new path.
I was diagnosed with breast cancer when my daughters were in first and fifth grades. I was afraid I was not going to see them grow up. They were so young and needed me so much. Their lives centered around me as much as my life centered around them. But my story is different. It is not about hard chemo treatments. It is about listening to your body. I was killing mine—with sleeplessness, a challenging marriage, alcohol and literally running myself to death. I was in constant fight or flight mode.
At the time, I was a full-time mom. I had worked part time at a community college teaching classes in child development, and I taught piano, but mostly I was focused on managing the home and being mom. I volunteered at school a lot, and kept busy with the kids’ sports, soccer, and swimming. A big part of my social life revolved around the kids and their activities. Life was full and I loved Mommy-ing.
On the Couch
There was no family history of cancer, but I had two difficult pregnancies, which turns out to have been a benefit. Both times, I went into pre-term labor at 26 weeks. With my first pregnancy, I was already three centimeters dilated by time I got to the hospital and ended up being hospitalized for six weeks, and on the couch for another five.
I wanted another child and had to convince my husband and doctor that I could do it again. I was so certain that I had changed the issues that made my pregnancy high risk. But the same thing happened, and I spent another 10 weeks on the couch, in and out of the labor and delivery room with many scary “is this it” moments. That was harder because I had a toddler at home already. We could not risk it again, so when the doctor finished with my second delivery, she did a tubal ligation right away. Then, within 24 hours, I went into a strange syndrome with hallucinations and body aches. It was super scary. No one understood what it was or why it was happening or how serious it might be. I had not left hospital yet, so I was quarantined with my newborn baby. When it finally calmed down and I was ready to go home, my OB/Gyn said she wanted to do full work up to try to figure it out. And as part of that, got a baseline mammogram. Turns out, that was a very good thing.
Now What?
A few years later, when I turned 40, I had the recommended “first” mammogram. The doctors had questions about the images. So, I had the baseline image, taken after the birth of my second daughter, sent from the new hospital while we were waiting on the repeat mammogram.
There was a difference. and we compared the scans while the more in-depth mammogram was taken. I was sitting in the imaging center listening to this young doctor say, “We don’t think there is anything to worry about, so let’s just repeat the image in six months.” But I was worried and knew the anxiety would kill me.
I asked about the next steps, which would be a needle biopsy. They still seemed unconcerned about what they saw on the mammogram and hesitant. “You’re so small and it will be so difficult and painful,” they said. But I was driven by fear and insisted that they do it. They had a tough time doing the biopsy because I was so thin and small breasted. But they did it.
Two weeks later, still pushing for answers, I had to call to get the diagnosis. Sure enough, they got a doctor on the phone to talk to me, who told me it was cancer and that I needed a surgeon. I was in the car at the time and continued with my errands, totally stunned by the news. I remember thinking, “Oh shit. Now what.” But I was determined to keep it together.
Uncertainty and Drive
It was the first of December, just days before the kids were going to get out of school for the season. As soon as I got home, I called my husband, and he came right away.
We agreed not to talk to the kids yet. There was still so much we did not know. But I remember picking up the kids a little while later. I was quaking on the inside but trying to be normal. But my daughter picked up on my anxiety right away, “Mommy, what’s wrong?” she asked. I nearly broke down right there.
We met with the surgeon after hours on Saturday. “Here’s the cancer,” he said, pointing to one, white spot. “We suggest a lumpectomy, maybe radiation, but we won’t know for sure until we get in there.” When I asked, “How do you know it’s not cancer elsewhere, where the white dots look just the same?” he had no answer. In the new image, I remembered seeing numerous tiny white spots all over both breasts. It looked as though I had been dusted with sugar.
He just wanted to wait and see. Again, I knew the uncertainty would kill me. I asked for double mastectomy. I wanted to live to see my kids graduate from high school.
Looking Like a Boy
We scheduled all the pre-op tests on one day, just after the kids got out of school for Christmas break. My husband took them for a father daughter day so I could get it all done, and then we told the kids what was going on. One sat by dad, one by me. One cried, one asked questions. It was a tough evening. I remember feeling super tender and exposed. I had such fear of leaving the kids, and they ask such tough questions, like “Will you die mommy?” But I just did not have answers for them yet. And I felt such conflicted emotions between the two quite different reactions of my daughters.
On the day of the surgery, I went by the diagnostic center two hours before the surgery so that they could inject radioactive dye through my nipples, while I was awake, to identify the sentinel nodes. Man, that was painful. I had decided against reconstruction, so the surgery was easy. But I walked out looking like a boy and stayed that way for years. I did not want to put in anything in my body that did not belong there and did not have enough body fat for flap surgery. Besides, it had cost the family so much for my cancer, and reconstruction would be even more. I felt responsible for that cost and could not imagine the expense of more.
Crash and Burn
I was stage 0, so there was no further treatment. I remember I felt so alone as I was recovering. One of my daughters, the one who asked questions, helped with the drains, and continued to be so supportive. And my sisters, mom, and sister-in-law all came to help, but it was short lived. Some of the soccer moms rallied, and covered carpool duties, sometimes I even rode along, but I was by myself a lot. I went to one support group, but my story so different. It felt wrong, and as if I just did not really have anyone. Sometimes I even felt guilty saying I had cancer because it is not like most other cancer journeys. I have close girlfriends with horrible stories and lengthy illness.
While recovering, I could not do lifting or driving, but I did routine things, and kept busy being a diligent patient. I remember driving for the first time to see my family. It was a four-and-a-half-hour drive. When I got there, I was exhausted, and so sore I could not put my jacket on and could not keep up with the kids in the garden. I could tell Mom was so worried.
Then, a few months after the surgery, the depression hit. I broke down in a bundle of tears in the closet, and my husband picked me up and took me to a doctor, who got me a therapist and put me on meds. After eight days on the meds, I felt like I was a floating cloud, suspended in the air and calm. I called the doctor, certain something was wrong, and when I described what I was feeling, she said, “It’s called being happy.” I don’t think I had felt that in years.
Things Fall Apart
I journaled a lot, pushed a lot of emotions away, and tried to maintain some semblance of order. Between dealing with visits to the surgeon, the psychiatrist, for therapy and the kids, there was a lot to focus on, and I was busy. By time I was diagnosed, I had been married for 13 years. I did not realize how challenging my relationship with my husband was until there was cancer in the mix. But I realize now that my running was a way to escape things. As was my drinking, which seemed innocuous enough at the time, yet had increased over time.
To get through the bad days, I cleaned, and drank (red wine) and ran. We ended up getting a puppy a few months after the mastectomy, Sam a Maltese. He was my cancer recovery dog. The puppy slept with me, and I walked him, and we were just together all the time. He accompanied me through it all.
Trouble at Home
My husband was very controlling around money. We were stressed financially, and the two difficult pregnancies had cost us plenty. I wanted to go back to school, but my husband disagreed. He had shed tears on the way home from meeting the surgeon that first Saturday morning. That was the last time I remember him showing any emotion. Sex became less often, and it felt as if he was as angry a lot. It just was not working anymore. We got divorced in 2013, nine years after my diagnosis.
By this point, I had a job teaching elementary music. I eventually owned a home and was regaining my independence. It was glorious. I had started dating again, and started working out, and just wanted to look like other women in the dressing room. I had worn prosthetics, but they were heavy and hot on my tiny body. And they took some getting used to. There was one time when I thought I would just slip them into a sports bra so they would be more comfortable, but before I knew it, they had moved around, and I had a uniboob! That just would not do. So, I decided to pursue reconstruction surgery.
Back for More
I had the first surgery to start with the expanders and a plan to get implants. But, it did not go as planned and I ended up having to have a third and fourth opening of the original incision to remove and then replace the implants. I am so thin that there was not enough tissue to support the implants. They had to do them again, placing them back over the top of the pectoral muscles. Now, 6 months have passed, the muscles are firing, and everything looks normal. I even got 3D tattoos, so I have nipples again. My whole posture has improved. I am not hiding it anymore and can stand up straight, which affects the way you dress, carry yourself, make eye contact, etc. I feel like a whole new woman.
Still, I worry about the cancer coming back. After my most recent surgery, when I woke up from anesthesia, my first words to the surgeon were “was there cancer?” The doctor assured me there was no cancer. But my brain still goes there. It is always in the back of your mind. I have seen both daughters graduate from high school and college. And I still wonder if/when I will hear the words “you have cancer” again.
Meaningful Change
From the time the surgeon put in the expanders, I took weekly pictures and sent them to my daughter. We laughed about it together. But when I was making the decision to do the reconstruction surgery, there were no real people involved. It would have been good to know how they look and feel on a real person. It would have been liberating to be able to talk about it.
That was when I got the beginnings of an idea to become an intimacy coach. There needed to be more conversation about this. I have adopted a whole new career, complete with training to help others with challenging issues surrounding their bodies.
Being a mom gave me the strength I needed to get through it all. But it also meant that I was in the habit of putting my needs last. When I had the expanders put in, I went right back to work. Same thing after the implants. There was a real pattern of denial. Cancer has helped me to recognize that I have needs, too. And that allowed me to have better, healthier relationships. Knowing that I count and having the tools to stay clear of resentment has allowed me to create honest and meaningful relationships. I wish that when I was in the middle of my diagnosis that I had had the friends and supporters in my life that I do now. And I hope to help others, particularly women, find the strength they need to have the relationships they deserve.
If you would like to learn more about Kim’s intimacy coaching practice, you can find her here.