After three diagnoses and four surgeries, Traci, a costumer for the television industry, bares it all to help other women anticipate and deal with metastatic breast cancer.
I was 39 at the time of my first diagnosis, working 70-hour weeks and finding time for friends and my husband in between shows. Life was full and busy and the last thing in the world I was thinking about was cancer.
At my annual checkup, my doctor found a lump and it was already big, stage III. I felt pretty stupid not knowing what it was I should have been looking for, even though my mom had had cancer and I was already getting mammograms. I balled for about 30 minutes. But then I had to get a grip because there was so much to do.
I found my doctors through my insurance company just sort of glazed over and bumbled my way through it. I had a double mastectomy, radiation and chemo, and also had genetic testing that showed I was BRCA positive. Before the diagnosis, I thought I was pretty infallible, but I was shocked that the two diagnoses came at me simultaneously, out of nowhere. I knew nothing about BRCA. How do more women not know about this, especially Jewish women? I was worried about what it would mean for me, and after the breast treatment was over, had a hysterectomy.
So Much to Worry About
I was also worried about what it would mean for my mom and sister. They both got tested after my diagnosis and came back positive for the BRCA mutation. Mom had already had a double mastectomy, but she had a hysterectomy, and my sister had prophylactic hysterectomy and mastectomy too. So, that was a very full couple of years.
Thankfully, I had a very understanding boss who didn’t want me to lose my insurance, so I went back to work after I had recovered from surgery. I had chemo one day a week and was at the studio the rest of the week. Work was a great distraction. The show, the actors, my boss were all very supportive.
My sister and mom going through surgery at the same time was hard, but actually gave me an amazing sense of purpose. They were there and so supportive of me, but then I traveled to Chicago to help my mom through her hysterectomy, and my sister too. She’s a couple years younger than me and found out she was pregnant while I was going through my treatment. She started seeing genetic counselor and was able to give birth before having her surgery. And I got to babysit my nephew while she recovered.
Strike Two, Strike Three
After all that craziness, there was a year that was pretty chill. And then my cancer came back. This time, there was no lump, because there were no breasts. Instead, I had incredible pain in my arm and stopped being able to use it. I got an MRI and learned that I had a compression fracture in my cervical spine because my C6 vertebra was full of cancer. They admitted me right away and I had surgery to remove that vertebra. I balled for about 30 minutes again before I could come to grips with that. We had done everything right the first time, and treatment had been aggressive, so how could it be back?
After surgery, they gave me chemo and radiation again. The first time, the tumor was estrogen positive, but the second time, it was triple negative, so it was a different chemo regimen, but chemo is chemo. It makes you a little nauseous and tired and forgetful. Radiation gives you burns and turns your skin red and crispy. And this time, I couldn’t work. I was in a neck brace for 7 months, couldn’t drive, could lift things. I couldn’t do anything. That was hard. And I lost my insurance, so had to go on COBRA, which was expensive and scary. I learned to check every bill from the hospital, because they were always wrong.
And then two years later, it was back again, this time in my brain. I kept having headaches I couldn’t get rid of, and a CT scan of my cerebellum showed metastatic cancer. Another surgery, more chemo and this time, immunotherapy.
It got easier to ask questions and talk with my medical team with each cancer, but it never got any easier to hear the diagnosis. I couldn’t have done it without my husband, Jim. Jim is the number one most amazing person in my life. He is the kindest most positive person and every time said, “We’re going to fight this with everything we have. We’re going to get through this.” He’s been such a great supporter, and helped me get through everything, even intimacy issues, which get complicated when you have a double mastectomy and surgical menopause. He always reminds me that no matter what, I’m sexy and we can fool around whenever I’m ready.
I reached out to two trusted women friends who both had already been through menopause to seek advice on dealing with intimacy issues. One explained menopause to me and made it clear that I would have to remind myself to be intimate — a lack of libido will make it difficult to be spontaneous. She recommended putting reminders on a calendar and being conscious of time passing. I have to admit, that as I go through surgeries and treatments, I force myself to be honest with Jim about how tired and weak I feel, but also how much I love him, and I assure him that sex will happen again. In the meantime, we cuddle a lot. We also shower together and try to have fun with coconut oil, which makes the pain from atrophy a little less. Another friend told me about Mona Lisa treatment which helps cure vaginal atrophy. It’s not cheap, but upon hearing about it, Jim immediately offered to pay for it!
The more surgeries I have, the more comfortable I get with my body. I was self-conscious before my first diagnosis, not a fan of my appearance. But now my body tells a story — my scars are from things I went through. I am way more comfortable with my scars than I was of my old body.
Documenting the Process
When I was first diagnosed and knew I was going to have a mastectomy, I hired a photographer so that I could see myself before and after. Here’s me now, here’s what it looks like after. We had so much fun that anytime I hit a milestone of some kind, we took a picture to mark the occasion. Losing my hair. Radiation burns. Surgical scars. My dad is a photographer and I’m in the entertainment industry — it’s just in my DNA to document. Even as a kid, my dad was always saying to me, “You could make a movie of this one day.”
When I showed people the images, they were fascinated. It made me think I could help others by showing them the progression. None of the women in my family were educated on BRCA, even though both my mother and grandmother had had cancer. Realizing that is what gave me the idea for my project — creating a photographic record of my cancer as a way of helping other women know what to expect.
We were close to having a finished product before the second diagnosis came down. That’s when I said to my dad, “It’s all you now.” So, it’s us, me and my dad, moving forward with this part of my history. He has been able to desensitize himself enough to be part of the photo team. He has seen and taken pictures of me in the hospital, baring scars, being vulnerable. It was weird for him to do, but he did it. I remember coming out of a surgery one time, being completely out of it, but signaling to him to document it. And because he’s a professional photographer with connections in Chicago, just by chance, a gallery he knew had a cancellation and offered us the opportunity to do a show. We’re prepping for that now.
A Do Over
When you go through something like this, you do find out who your support system is and who can’t handle it and disappears. My family was great, but there is this weird thing that happens with people you think you are close to — they just fall off. I don’t know what it’s about. You can’t expect everybody to say and do the right thing. It’s an interesting thing that just happens. People like to think it’s over now and want reassurance from you that you’re done. They want it to be over because they don’t want to think about it, and who can blame them?
If I think about it too much, I can get depressed. There are reminders of what I have been through and am still going through, like lymphedema and fuzzy thinking. And those reminders of the cancer can put you in a darker place. But I had an MRI last week and that showed that my brain is clear. That’s a big relief. It’s not a secret that it could come back. But I’m feeling pretty good right now, so I like to focus on what is in front of us now. The way I see it, I got a do over. I get to decide every day who I want to be. I’m starting from scratch. And this is who I am now.
(For more information about Traci’s exhibit, or to see additional photos from her project, go to @1cancerpatient on Facebook or Instagram, and watch for updates at Dankhaus.)