Truus, a news producer who had worked stints in Iraq and Afghanistan, was used to the dangers of war, the possibility of getting caught in explosions. But still she found her breast cancer diagnosis in 2011, and the series of surgeries and procedures to remove the tumor and reconstruct her breast, traumatic.

My first reaction when I was diagnosed two years after my husband died of Merkle cell carcinoma was, “it’s not fair”. I had just gotten back to work after caring for him and was ready to get on with my life. 

The year before, I thought I felt a lump in my armpit, so I saw an oncologist who felt around, did a scan, and found nothing. So I expected the same thing in 2011 during my Mammogram scan. But when the radiologist discovered a small shadow, I was just stunned. Then I fell apart; I had trouble dealing with it but was told it was discovered very early. A biopsy and another scan showed that it had gone through the duct wall and was Stage 1. 

A Trip to the ER

I had surgery that July, but the results showed no cancer cells in the tissue they removed, which was very disappointing and upsetting. I was told to keep coming in for scans and checkups. In October, I had another biopsy and they could finally see it amid all the scar tissue so put a marker in. After a second surgery I went to an oncologist who does radiotherapy—they didn’t think I needed chemo—and started a five-week treatment, while I was still working, at least for the first couple of weeks.

While I was getting the radiation, I had just been to lunch with friends when I started having breathing problem, and they took me to the hospital. It turns out that I had pericarditis – an inflammation of the heart sac, basically fluid around the heart and they gave me high doses of antibiotics and checked me in. They continued with the radiotherapy even though it was likely to have caused the problem.

Oh No, Not Again

Even though they got it early, and I knew from what I read that my survival rate was very good, I still felt bad. And it wasn’t fair, having spent all that time with my husband dying, going through this whole period of watching him deteriorate. We were always thinking positively and keeping hope, but every time we turned around it got worse. At one point, we thought he was maybe free of it, although we knew the cancer was really bad, so we went to Greece on vacation. But then he fell a couple of times and behaved strangely, so I took him home. The cancer had traveled to his brain and three months later he was gone. It was really hard on me, and I was just getting over all of that when I was diagnosed. 

A friend of mine was diagnosed at a similar time, so we were going through it together. And I had other friends who had cancer, so I didn’t feel alone. Being surrounded by people facing similar problems made it seem not so bad. But, for me it was a feeling of “oh no, not again.”

Reconstruction Gone Wrong

The scar from surgery had pulled in around my nipple and left me deformed, so I had reconstruction surgery in the spring, because I wanted to retire in August and would lose my private health insurance through work, and a new policy wouldn’t cover the cancer.  I had the surgery three months after radiotherapy and got very bad infection. The wound started weeping and I had to go to the hospital every day for it to be dressed until it healed in October.

I ended up with a hole in my breast, which eventually closed over, but made things worse than when I started. I looked really terrible and made an appointment for a second opinion. The doctor said he would never do reconstruction within six months of radiation. It’s better to wait a whole year since the tissue is so damaged and prone to infection. But I did not blame my surgeon becauseI felt I had pushed her to do it. In hindsight perhaps she should have encouraged me to wait.

Another year went by and my original surgeon offered me a lipo-filling reconstruction to fix the dimpling; I got another infection, but not as bad as the first time. With each infection I felt depression and concern, “why am I getting these infections? Is it the office or is it me?” Then I waited another year and went back to the surgeon who had given me the second opinion. His team offered plastic surgery or lipo-filling. I chose for two more sessions of lipo-filling.  My nipple is still off center and there’s still some rippling and scarring—I have lots of little scars from every needle. They’ve offered me another session, but I’ve decided not to have any more surgery.

Friend and Family First

I’m lucky that I survived it. With every mammogram, it’s always in the back of my head that it could come back, but it doesn’t stop me from doing anything, might even prompt me to do more of the things I want to do. I’m not religious, and know life isn’t fair life, and I am more fortunate than many others. I’m happy that my cancer was discovered early and am fortunate that I could retire early.

My priorities changed, and I wanted to see more of friends and family. I’ve always been pretty independent, even before husband’s death. I had lived independently for a long time before I met my husband and had also traveled for my work. My girlfriend and her husband live around the corner and have helped me the most, they were my rock; she stayed with me when I first came home from the hospital. In terms of mental support, they were there as were lots of other friends.

A Personal Attack

After surgery, I took Tamoxifen for six years, but was only supposed to take it for five and wondered who was going to tell me to stop. My radio oncologist had retired. I saw an oncologist at a different hospital who had no records of my history and couldn’t figure anything out at first. Eventually, after checking my records,  she signed-off on me stopping. She also asked if I would take part in a mammogram study to see if women should have one every one, two, or three years. I’m in the group that gets them annually for 10 years, which I’m very happy about. Once we’ve passed 10 years, it will be OK to wait between tests. Now, I’m happy and feeling better; I don’t have to take Tamoxifen anymore and my energy is better.

My cancer diagnosis felt personal. I was under attack from my own body, which made me more aware of my mortality and vulnerability, more than working in a war zone. I thought “bombs won’t happen to me,” and thought the same thing with cancer. It happens to other people, not me. But of course, it does happen, that is what changed me and made me set my priorities differently. 

No Valid Assumptions

I found it surprising that it really stops you in your tracks when you get diagnosed. You are always proceeding as if life goes on forever and worry mostly about small stuff. But when you get cancer it feels like your life stops. It doesn’t. You have to go on. Nothing I had assumed was valid any more.

I didn’t really worry about dying, just became more aware of my mortality, so I do different things now. I loved my job—it was a fascinating career, but it was time to do other things. Now I travel quite a bit and spend time with friends and family. And feel very fortunate to be able to do it.

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