Christina, a mother of two in her 50s, co-owned a yoga studio in Brooklyn. She was teaching yoga, running the business, and had just been accepted to start a Master’s program in Traditional Chinese Medicine, when she found out she had triple-positive breast cancer. Right at the end of her breast cancer treatment, she was also diagnosed with esophageal cancer, which had spread through her stomach, to her liver.
In 2015 I started to think about redirecting my focus. Owning a yoga studio with two other people in a tiny space can be frustrating. The hours are long and it’s hard to support a family with it. So I decided to go to acupuncture school. During my GP visit to get the necessary school vaccines, I asked the doctor to feel my breasts for anything abnormal.
I was always consistent about getting mammograms, since I have very dense breasts and my grandmother died in her late 40s from breast cancer. The doctor thought she felt something and even though she didn’t think it was anything to worry about, sent me for a sonogram and mammogram. Turns out it was a triple-positive, local, but aggressive, 4.5” tumor.
Isolated in a Different World
When that first diagnosis came in, I was just about to teach a yoga class, so I had to compartmentalize what I just learned and still teach the class. Afterwards I went to my sister’s office and had a meltdown; I couldn’t tell my mom…her mom had died of cancer. Telling this news to the people in your sphere is surreal. And it’s terrifying to be facing your own mortality as you raise two young kids.
I felt isolated, because the experience is so particular. Once you’re diagnosed, you’re thrown into a different world, separate from the one that you were living in. It feels sometimes like friends and family want reassurance from me, and I can’t give them that.
Because it was so aggressive, I was advised to undergo chemotherapy treatment before surgery and radiation. I started the chemo right before Christmas, had surgery in May; since there was no evidence that I needed a mastectomy, I opted for a lumpectomy, and ended up having 9 lymph nodes removed as well. I was put on an immunotherapy infusion therapy soon after the surgery, every 3 weeks until the following February and underwent radiation therapy five times a week, for 21 sessions in August.
A Second Cancer
I had finished radiation in August 2016, went on vacation, started school, and was ready to get my life back, but in January 2017, while I was still getting the immunotherapy infusions of Herceptin and Perjeta, I started having trouble with digestion. It felt similar to chemo acid reflux, but different too and I began having problems swallowing.
My oncologist asked me to get an endoscopy and colonoscopy. The GI did a little palpation and said I needed a sonogram before the endoscopy to get a better picture of what was going on. I went in the following day and the technician kind of had a freak out on me. I had an agonizing weekend trying to reach the doctors, and on Monday my breast oncologist called and said they were seeing things on the sonogram that shouldn’t be there. The GI recommended a biopsy during the endoscopy, which would be more intense, but the oncologist said I should do it. The biopsy confirmed I had esophageal cancer that had spread to my liver.
It took about three weeks to see all of these doctors and I was getting sick really fast. It was Stage 4, which is scary, and I couldn’t get on any trials because I had just finished breast cancer treatment. The location of the cancer made for a dangerous surgery without a conclusive success rate, so I went straight back into chemo, with radiation as a back-up treatment if I wound up unable to eat.
A Life-Changing Moment
My port had been used so much that the following June, one of the treatments leaked.I had to get antibiotics and then take out the port. I couldn’t have one in the other side because that’s where the breast cancer was, so I ended up with a picline. This made bathing and swimming very challenging….. and also meant I had to go the hospital every week to get it cleaned and re-dressed.
It was so interesting, because the two different types of cancers I was living through, occurring so close to one another, were so different. Breast cancer is common, and I live in the best city in the world for medical care, so I felt like this was something I had to buckle down and get through. I didn’t experience so much as a death sentence, even though it was incredibly hard and unpleasant and I had to rearrange my life and deal with all the crap of stepping out of my business. But I really trusted that it would be OK.
But the esophageal cancer was very different. My breast oncologist said, “I cured you of breast cancer, but I don’t know what to say about this one other than put your affairs in order.” It was really intense, a life changing moment—a doctor who cured me now telling me there is no cure. I had to make sure I got my shit together.There weren’t clear answers to my questions, and from one day to the next I received very little encouragement. The doctor for my esophageal cancer forced me to be self-trusting, and I’ve had to push back on certain drugs, like opiates. I’ve had to become an advocate for myself.
Moments of Despair
I’m really lucky to have my yoga practice, which helps to ground me. And I’m reading a lot of works on Buddhism and spirituality, learning how healing happens when you are facing death. I do a lot of mantra and light visualization, but also have moments of despair, where I think “oh my god, I might not be here for my kids,” and not knowing is so painful. I know I can’t get attached to my daily life, and how I go though my life has shifted. Now I have to think about not doing too much, getting rest, and conserving energy.
My kids are amazing. I don’t hide anything from them, but I don’t go into details about scans unless they ask. There have been times where I’ve been very sick, unable to get out of bed and with a fever, and unable to eat. This would freak them out, and they sometimes acted out or became angry, so I made sure we had open conversations about things. The little one asked “when are you going to die?” I said “we don’t know when we are going to die. But it is something we all do” She wants to know who’s going to take care of her.
My husband and I had a rocky relationship before my illnesses, but these cancers made it clear to me that we needed to part ways. I felt like we brought out the worst in each other, he felt helpless and that irritated me. We couldn’t get past all that. But he has been there consistently for the kids and continues to be there for them – and for me but from afar. Funny how having a life threating situation happen puts everything into focus and clarity.
A Terrifying Responsibility
I have a phenomenal support system—the yoga community, friends, people half way around the world…the kids are very aware of this community because it’s present for them too. We had people cooking for us for over two years, doing grocery shopping, taking the kids to the movies or appointments or just sitting on the couch with me. And I’ve had someone with me for every single infusion.
It’s so important to find a support network and focus energy on that. People may want reassurance from you that you’re going to be fine, but they also want to help. It gives those that love and care about you a chance to participate and creates a virtuous circle. There are people out there that have cancer that I can’t talk to; they are in hiding or in fight mode, or in total abject fear. I can’t live in that state, that’s not how I approach it, so support groups haven’t been very helpful. But whatever your support network is, be conscious that it is there and use it. I never asked for help before, but now I do.
Before treatment I was pretty organized, but I’ve been on chemo so long now that chemo brain keeps me from managing things as efficiently. Now I have to accept giving up that control. I can’t will my white blood cell count into place, but I can keep my house tidy, or take care of my plants. I can’t control the situations, but I can control what I do in them. I’m using CBD oil and medical marijuana, which really helps with focus, but it’s hard. Because of the lifestyle I have led, it feels like people think if I can’t do it, how are they supposed to? It’s a huge, terrifying responsibility.
Overwhelming Dark Side
I don’t get too anxious about scans—I use my practice to keep that at bay. The anxiety is more about getting through the day, making sure the kids are fed, paying the bills, not the bigger picture or what the next scan is going to say. There’s a lot of fatigue around this whole thing, the drugs and the disease. It’s exhausting just managing cancer, the mental, spiritual, financial and physical. I don’t know how we are going to pay for all this. But I have to trust and have faith and let it go. If I go to the dark side, it’s too overwhelming. I understand why people drug themselves out. I won’t do that but get it.
The hardest part of cancer has been losing my identity because I’m no longer who I was. When I was running a yoga studio and teaching, there were all these expectations. I defined myself around being an owner, practitioner, teacher and parent. Now, I don’t know how I define myself anymore. I have always worked and being of service has always been important to me. But it’s really hard to be in this space right now when I just can’t work. In some ways I feel like I am more myself now because there’s nothing external defining me.
Waking Up to Cancer
I try to focus on the gifts; I get really sad because it’s sucky. But it’s my journey and I have to do what I have to do. But it’s also lonely, frustrating, and annoying to be focused on this, to wake up each day and have cancer. The question is always there; what are the doctors going to tell me? Is that a new lesion that I’m feeling or just scar tissue? I have to be there for my kids, have to see them through college. It’s exhausting, but important for me to honor the feelings of sadness, fear and the unknown, as well as the magic that this experience has introduced me to.
I am now on an oral chemo and will be on it indefinitely. My last couple of scans were clear but I still get scanned every three to four months. The chances of recurrence are very high. I am trying to get to the 5 year mark….. it seems then the chances start to diminish. There is no clear protocol on this disease. It never shows up in young healthy people, so doctors don’t know what to do for me. I have to trust that I can pull it together and keep myself at least cancer steady, if not cancer free.