Stories

When I hug my children, I can’t feel them. I can’t feel the warmth of their bodies against mine, I can’t feel them snuggle their heads against my chest, finding comfort where I feel nothing. All I have is the pressure of them against me, so I just squeeze them harder.

“Stop talking about it you’re fine.” This is what I was told when the people around me saw the improvement in my appearance after fighting through chemo. But what they don’t understand is that once the physical treatment slows down, it’s not just over.

I was diagnosed with Stage 1, Invasive Ductal Carcinoma when I was 36 years old and re-diagnosed two years later. I am a stay at home mom with a preschooler and a 7-year-old. I had a strong history of cancer in my family and had a MRI yearly. In June 2014 they found two spots, one was invasive. I met with a surgeon the next day. I had to have a complete double mastectomy and woke up surprised after the surgery with an expander instead of implants, since my chest wall was uneven.

People often think that getting a double mastectomy is just getting a new set of boobs. This is not the case, not at all. I was stunned by the lack of feeling in my chest, the numbness at the center of my body, over my heart. When I hug my children, I can’t feel them. I can’t feel the warmth of their bodies against mine, I can’t feel them snuggle their heads against my chest, finding comfort where I feel nothing. All I have is the pressure of them against me, so I just squeeze them harder.

After my surgery, the Bone and CT scans came back clean. I had a full auxiliary dissection, 14 lymph nodes were removed, 10 tested cancer positive. I started chemo. I made it through one full cycle and two infusions. But I had a reaction to the second infusion. After a month off, I began heavy radiation. This gave me 2nd and 3rd degree burns, bad enough that I had to cancel my last round of chemo. I was also taking Lupron shots was menstruating every three weeks. I told my doctors this had to stop, I wanted to go through menopause. Then I tested positive for a Palb2 Mutation. This was treated in a similar way to BRCA2. A month after radiation I had my ovaries and fallopian tubes removed.

Each time I waited for test results, it was excruciating. No one wants chemo. The waiting takes over, chasing normal thoughts out of mind, replacing them with cancer, with what lengths will we have to go through to get rid of it. But I wasn’t the only one waiting.

The worst part was explaining what was going on to my kids, how are you supposed to do that? I wanted to protect them from everything bad, from all the hurt. I knew that my pain would hurt them too. It was even harder to tell them after the second diagnosis. They were able to have a better logical understanding of what was going on, but it was still so, so hard for them. My son would tell people that he thought “his mommy was going to die”. He shouldn’t have even known what death is, let alone be thinking of it as a possible reality. Each time I went in for a scan, my kids knew, and they were waiting for the results too. I could deal with the physical part, that I could work through as it came, but I couldn’t bare breaking my kids’ hearts. Yet I had to, I didn’t have a choice. In the midst of all this my 4-year-old niece was diagnosed with leukemia. My kids couldn’t understand why this was happening. People, loved ones, all around them were getting sick. Cancer became their new normal. Hospitals were as familiar to them as home or school.

The job of a mother is to be selfless. When fighting cancer I had to be selfish. My kids needed me to get better, to do this, I had to focus on myself. For so long, especially going through it the first time, I felt like such a burden on everyone surrounding me. I continually apologized to my husband and parents, acutely aware of the stress I was adding to their lives. My friends grew tired of me being sick, the “novelty” of cancer wore off, and I no longer felt as if I could open up to them about it. My best friend especially shut down the topic. But I needed to talk about it, and at my lowest, when I needed her friendship the most, she walked out of my life. Another friend told me to get over it and another woman made negative comments about my appearance.

Cancer took over my life, I couldn’t stop thinking about it, I couldn’t sleep. For so long I thought that something like this would never happen to me and then I was faced with my own mortality. How am I supposed to just move on from that? I would love to be able to not think about cancer, to go a day without one mention of it. But each morning when I get dressed I see my scars. The implant on one side of my chest has hardened from the radiation. Each ache, each little pain sends a shock of panic through me. Is this just a normal pain in my hip or is cancer growing there? After all, pain in my arm is what led to my second diagnosis, this isn’t just paranoia, this was a reality and could be again.

The scars cancer leaves aren’t just physical, they’re emotional too. But just as a broken bone grows back stronger, so did I. I learned how miraculously resilient the human body is, and I’ve learned how strong my family is. I’ve become a resource for others, able to tell them to accept both sides of the coin. Advice I would give others going through this is to be grateful to be alive and feel free to talk about the reality of the experience, remember to focus on yourself, you have to, and as always to keep fighting.

By: Schuyler Cunningham and Mary Walz on behalf of Interviewee

As a man, I felt suddenly emasculated, stuck with a limp dick. I received a penile implant, but I can no longer ejaculate. These were new realities to my life, ones that felt like I was losing parts of my identity I wasn’t at all willing to sacrifice.

I stopped sleeping well. I kept having the same dream: I’m back in the emergency room in Kandahar, before I was diagnosed, and I can’t shake the feeling that my body is trying to tell me that something’s wrong.

That was how I had found out. February 13th, 2013. I had been getting ready to deploy to Afghanistan, and the doctors found prostate-specific antigens in my system. Every man has them, and levels around 3 or 4ng/ml can be normal, can mean nothing’s wrong. But the higher the level, the more the likelihood that you have prostate cancer increases. They did a biopsy to be safe, before I was sent off. And that was when they knew.

More tests. Bone scans, CAT scans, screenings to see if the cancer had spread to my bones, my brain, my blood. Nothing detected there. I went for a second opinion, and got the same diagnosis. An aggressive case of prostate cancer. My PSA levels had risen from 3 ng/ml to 24 in three months.

Then came the treatment. I had my first surgery in May, and began 40 days of radiation in mid-August. I was put on a female hormone to diminish my testosterone levels. The oncologist told me that treatment was my best hope.

Throughout this process of being diagnosed and treated, I became angry, and I used that anger to say, “Fuck you” to cancer every chance that I had. I put distance between myself and my diagnosis; cancer was an adversary, and one I could fight. I did yoga, drank green juice, kept healthy and busy. Shortly after my surgery, even with a catheter, I started walking and later successfully ran a 5k. I worked all but 2 days during my radiation therapy.

Cancer was not my life, would never define me, but it did create strains I had to adapt to. My anger helped to drive me, but it also shielded me from fully realizing the trauma and the fear that I was experiencing. If I worked hard enough, I didn’t have to feel the weight of my diagnosis. Instead, I could be upset at the way it changed my circumstances. I wasn’t going to get to deploy to Afghanistan. I could no longer take part in the adventure that I love.

It hurt my family as well, including issues of sexual dysfunction that affected my relationship with my spouse. As a man, I felt suddenly emasculated, stuck with a limp dick. I received a penile implant, but I can no longer ejaculate. These were new realities to my life, ones that felt like I was losing parts of my identity I wasn’t at all willing to sacrifice. And still, there is the unpredictability of the illness. There is no current evidence of disease in my body, but every time I take a blood test I hold my breath. Every time, I hope that I miss that bullet.

Having those dreams helped me confront the fact that I had experienced trauma. I can’t say if going through this trauma, of experiencing cancer, has made me a stronger person. I was a 57 year old veteran when I was diagnosed. I just knew if I could get through post-traumatic stress disorder from my military service, I could get through cancer. Especially because I had better support with the cancer than with the PTSD. Neither is easy, but I never quit. Some of the identities that I had died, but I wouldn’t let my brain overthink my situation. Sometimes, processing means detaching and looking outside of myself.

I had to work through my issues with my identity on my own. With all I was doing to maintain my physical health, I probably should have gotten more help with the mental as well. The prostate cancer support group was bullshit–just a bunch of older guys wishing that they could have sex. That wasn’t me. The reactions I’d get from some people also didn’t help. I stopped being surprised at people who have a hard time being close to a disease like cancer, who can’t separate you, the person, from it, the sickness. Others could be dismissive, or overly sympathetic, or plain don’t know how to engage with you because they don’t have the skill set to be able to. People are just people. Few people can be with you no matter what.

The ones who can, though, are special. Find them. Look for those empathetic friends. That was something I wish I had been told before I began to go through this part of my life. If there’s an agency, clergy, or counselor that you trust, they can help with the grief, the changes, and the trauma. Find strength in a power greater than yourself and hold it close. Again, people are just people. Even with all that we are capable of on our own, we don’t have to go through trauma alone.

By: Schuyler Cunningham and Marcelo Rivera-Figueroa on behalf of Interviewee

Welcome!

Thanks for your interest in The Cancer Trauma Project. I’m interviewing people who have cancer or who have had cancer about the emotional trauma they experienced. If you’d like to participate you can complete our screening or send me an email at [email protected]  or call +1 202-570-7795 – if the person answering the phone says Center for Neurocognitive Excellence you’ve reached the right place!

We all know that having cancer can be a very stressful experience for both the person with cancer and their support system. But what hasn’t been clearly documented is the way the stress of cancer is emotional trauma.

The Cancer Trauma Project is looking at trauma as Dr. Saakvitne and her colleagues did. Trauma in people with cancer is the unique individual experience of an event, a series of events, or a set of enduring conditions, in which the individual’s ability to integrate their emotional experience is overwhelmed.

My personal experiences and work as an oncology social worker has taught me that the emotional trauma of cancer is not understood by the medical field even though people with cancer or who have had it really understand why cancer trauma is so important to address.

If we are going to truly help people with the emotional trauma of cancer, then we need to know how the emotional trauma of cancer happens. By listening to your stories, the Cancer Trauma Project will spread the word through writing, speaking, and training.

Please join me in this mission.

Click here to complete the screening to share your story.