A native New Yorker, Shira Kallus Zwebner is a communications consultant and writer living with her husband and three children in Jerusalem, Israel. Diagnosed in 2017 with diffuse large B-cell lymphoma, she's fighting her cancer battle and blogging about the journey at hipstermomblog.com
Patients with cancer have a right to choose not to treat their illness, even if it’s not a popular decision.
My cancer diagnosis didn’t come as a complete shock to me, it was more of a confirmation of what Google and my gut had been telling me for a week between my emergency CT scan and that fateful doctor’s appointment. Google “spots on the liver” and pages and pages of results all lead to a cancer diagnosis, although which type of cancer is a crapshoot. So, when my doctor called after-hours and told us that we needed to come see her immediately, and that she would wait in the office until we could get there, I knew the news wasn’t going to be good.
Hollywood’s depiction of that moment you hear your cancer diagnosis tends to be so dramatic; the world is supposed to become hazy as words and sounds fade into background noise while the person – suddenly a cancer patient – experiences a plethora of emotions from disbelief to denial. I felt very present in the room as my doctor confirmed that the spots on my liver were cancer, and I vividly remember watching my husband bury his head in his hands while he wept.
There was a lot of information to take in during that first appointment, as we had so many questions. We didn’t know what kind of cancer I had, just that it had already invaded my liver. I needed a CT-PET scan a few days later to find the tumor so they could identify my primary form of cancer. I was encouraged to buy a binder to keep all my medical papers in one place, and was provided with referrals to an oncologist, the CT-PET, and official documentation about my diagnosis to send to both my health care provider and Israel’s national health service.
As we listened to what needed to be done to find and type my cancer, I asked my doctor if I was going to die. She was honest and said that she hoped not. When I asked her if she thought my cancer was treatable, she was honest and said that she hoped so but without knowing what type of cancer I had, she couldn’t tell me what type of treatment I was facing.
My husband squeezed my hand and said that it didn’t matter, we would fight cancer no matter what it took, no matter what the treatment entailed. I remember taking in his words and suddenly feeling that weight and responsibility on my shoulders. Suddenly choosing treatment wasn’t a choice I would be allowed to make on my own, and that frightened me. As a young mom in her early 40’s, I had a husband and three children at home who needed me, and so there was this expectation that I would do whatever I could to fight and survive.
Days later, when the CT-PET results showed cancer had spread to my spleen and four bones but did not reveal one primary tumor. So, I was now dealing with stage 4 cancer but still did not know what kind of cancer I was dealing with, and it was agony. I was stuck in this limbo state, not knowing what exactly I was dealing with; if it was curable or even treatable.
One night, while we waited for the biopsy results on my liver, I told my husband that I didn’t know if I would choose to treat my cancer. My words surprised him. I explained that I wasn’t afraid of pain or discomfort, but what I didn’t want to do was put him and our children through the trauma of treatment where the result was death. On the one hand, I didn’t want my kids to have memories of their mom in pain, while on the other hand I wanted them to know that I fought like a lioness to survive, to stay here for them and our family. I was so conflicted about a course of action, or inaction, it led to weeks of sleepless nights and anxiety.
Once I finally had my diagnosis and learned that my hematology-oncologist was confident that he could treat and potentially cure my cancer diagnosis, I made the decision to move forward with months of chemotherapy. Reflecting back, I realize it wasn’t a decision I came to on my own. It was a decision made with my loved ones perched on top of my shoulders, with the responsibility of my stage of life leading the charge.
How many cancer patients make health and treatment choices based on the wants and needs of others, over their own desires? People often ask me for my advice on how to talk to a loved one or friend that is newly diagnosed with cancer. If there’s one piece of advice I can give, it’s to offer steadfast support while withholding your opinion. The last thing you want to become, is another voice to sway the patient into making choices they might not want to make.