Shira Zwebner

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

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.

Articles

Patients with cancer have a right to choose not to treat their illness, even if it’s not a popular decision.

Patients with Cancer Should Have the Right to Make Unpopular Treatment Decisions

I was an angry cancer patient, a cancer curmudgeon if you will. I spent three weeks during the diagnostic stage in a state of absolute disbelief, then settled comfortably during chemo into a permanent state of rage. I was livid that I had cancer, and the weekly doses of prednisone did nothing to quiet that rage.

My family walked on eggshells around me, afraid that I would snap at a moment's notice. Anything set me off, from having to miss my daughter's first-grade school play to spending a week quarantined in my bedroom when my youngest child had a fever and strep. I was She-Hulk; big, bald and always angry.

During my cancer journey, I blogged about my feelings almost daily. Most of my posts were true reflections of my current state of mind. A mixture of sadness, anger and despair seemed to be my nearly permanent mood. Many of my friends countered my feelings with encouraging words, suggesting that I focus on the positive and my blessings. Sometimes it was helpful to take that hard look in the mirror to see my blessings but often, it was annoying. I didn't want someone to point out how good I had it, I just wanted someone to empathize that I was going through a rough time.

When I got my NED, I slipped from rage into a state of disbelief euphoria. Suddenly, the world was bright once again and the possibilities were endless. That first week without the weight of my PICC line, I showered for hours, wore t-shirts without worry, and planned this incredible comeback to my life. In reality, what waited for me post-treatment was new physical challenges post-chemo include a bout of Bell's Palsy and perimenopause, significant financial debt from reducing my work hours to part-time, and many other roadblocks that cropped up in my path to my new life. I felt like I had been prepared for the cancer battle, but I was significantly unprepared for this post-battle cleanup.

Nearly a year and a half post-treatment, COVID-19 roared into my life while I was still struggling with cancer PTSD. Like so many cancer survivors, I had big dreams for this new life of mine. Aspirations for my career, my family and quality of life; I had barely an opportunity to check off many items on my bucket list before we were all sent into this new life of fear and quarantine.

That familiar cancer rage came back with a vengeance as I watched the dreams of my new life slip away. As someone in the high-risk category, I won't ever be able to let my guard down until there's a vaccine or cure for COVID-19. As my country eased restrictions around me, I still have to shelter in place, maintain social distancing and I wonder if I will ever be able to walk outside again without a mask.

I shared my anger and despair again with my friends, and once again, I was met with a lot of encouragement and positivity, verging on toxic positivity. According to an article in Psychology Today, "the phrase 'toxic positivity' refers to the concept that keeping positive, and keeping positive only, is the right way to live your life. It means only focusing on positive things and rejecting anything that may trigger negative emotions."

What happens when dark feelings are met with toxic positivity is tremendous guilt. At least in my case, when I share the challenges I'm feeling and I'm met with toxic positivity, I feel so much guilt that I just completely shut down. I start internalizing my feelings and begin to worry that all these negative emotions will bring back cancer; instead of turning to my friends for a comforting word or empathy, I turn to my pantry and refrigerator to eat away these feelings. A piece of cake won't ever make me feel guilty about feeling despair about my current situation, but it will lead to other health problems as the pounds start to creep up, which makes food, not the best solution.

For now, I decided to give my friends and family a break from my true emotions. I know they mean well and care for me, but sometimes saying the wrong thing is worse than not saying anything at all. Fortunately, I have a therapist trained in post-cancer PTSD to help me work through these new issues. But if I were ever asked how someone could support a friend either going through treatment or post-treatment, I recommend listening without judgment or just lending a shoulder to cry on. It's more than okay to empathize with your friends and agree that right now, life just sucks, and just leave it at that.

Support for cancer patients and survivors comes in all shapes and sizes, but sometimes the good vibes, encouragement and positivity can go too far

Cancer and Toxic Positivity  

When my hematologist-oncologist suggested that we have a telemedicine appointment last month, I breathed a huge sigh of relief. I couldn't bear to face him, to see his expression when he noticed just how much weight I've put on since the start of coronavirus quarantine. It's funny, not once during treatment for stage 4 non-Hodgkin's lymphoma did he even broach the topic of my weight. Even though my cancer was discovered during pre-op testing for bariatric surgery, we never discussed what I saw as the elephant in the room. Me. When I asked him what I should be eating, or avoiding, during treatment he told me to eat whatever I wanted. I pressed him about sugar, how the internet told me that sugar would feed the cancer cells and send me to my death. But he ignored it and told me that I should eat whenever I felt hungry and, well, I could eat whatever I wanted.

I put myself on a strict diet during chemo though, working with a naturopath I had never met, following a meal plan created for a male cancer patient fighting leukemia. I made myself vegan protein shakes and cut out all sugars and complex carbohydrates, opting for quinoa and oatmeal to replace pasta and rice. I soaked all of my fruits and vegetables, and when my blood count was too low and I was neutropenic, I would instead eat cooked vegetables only. I made bone broths and signed up to take the course offered by the Cancer-Fighting Kitchen, to learn how to fuel my body properly during treatment. I discovered that fasting on chemo days helped me with nausea and so I began a cycle of fasting for 24 hours at a time to ensure that I wouldn't vomit or feel sick after treatment. Steroids, fasting and chemo made my body weak, my metabolism sluggish, and my weight loss stalled.

When I was declared NED (no evidence of disease), I committed myself to stick to a new, healthier lifestyle. I incorporated more daily exercise into my life, walking for miles when the weather allowed then got a puppy to make sure I left the house every day. I focused on strength training and tried lifting weights, working with a TRX trainer, private yoga lessons, pilates, barre blends, core training, Beachbody workouts and boxing. But I wasn't able to stick to any exercise program beyond my daily walks, my stamina was just too low. I saw two different nutritionists, went Keto, then tried the 2B Mindset by Beachbody, then F-Factor, and I managed to maintain the same weight for close to a year. That weight was still 50 pounds higher than my goal weight, so I tried intermittent fasting and went vegan.

When COVID-19 took over our lives and sent us into quarantine in early March, I was still maintaining my weight and sticking to my daily walks, avoiding sugar and junk food, and eating plant-based. But coronavirus quarantine, and the physical limitations on exercise, became too much. I could only walk 100 meters from my home, wearing a mask made me feel like I was suffocating while walking, and with six souls in a three-bedroom apartment 24/7, there was no space to set up a yoga mat much less try a workout video. The mental toll and the fear of catching COVID-19 sent me into a spiral; I will always be in the high-risk category and fighting another unseen deadly illness so soon after fighting cancer, became too much for me.

I turned to food for comfort, to help with the anxiety; I couldn't yell at my husband or children if my mouth was full of chocolate cake! I went back to sugar, which just brought on the inevitable cycle of riding those short terms highs and the longer lows until I could get another sugar fix. I felt powerless and ashamed of myself for giving up my healthy lifestyle pledge that I had promised myself in survivorship.

We are almost three weeks into the easing of restrictions here in Israel; my children are back to school full time, my husband is working from his office and we are adjusting to this new normal while we prepare and anticipate a second wave. I'm trying to recommit myself to my wellness and fitness pledge, but it's harder. Instead, I stopped thinking about my weight loss goal and just focus on one thing at a time. For now, being able to walk my puppy farther than 100 meters from my home is my wellness win.

Dealing with the challenges of health and wellness after cancer treatment is tricky enough, but managing it in the midst of the COVID-19 pandemic is an even bigger obstacle. One survivor details how she tries to take it one wellness win at a time.

Health & Wellness After Cancer and During a Pandemic

I've written this blog post in some capacity every day over the past four weeks, but when it came time to actually put words to paper, my mind has gone blank.

 contributors have already expressed how cancer has prepared them for coronavirus and how social distancing is not a foreign concept for people going through treatment. I've read through these posts and nodded my head in understanding, so much of my own experiences are similar.

With a weakened immune system, even a year and eight months post-treatment, I worry like everyone else about getting sick. I don't read statistics, just like I didn't read statistics when I was diagnosed with stage 4 non-Hodgkin's lymphoma, to preserve my already fragile state of mind. I too worry about the mental state of my children and disagree when people tell me that we are all in this together. My children are dealing with coronavirus less than two years after their Mother was diagnosed with cancer. They are not on equal footing with their peers; they are navigating a second trauma at very young ages.

But we are listening to our government directives and following all guidelines. Unlike the US, Israel began shutting down by the end of February, as cases in our country started to mount. We have been in various forms of lockdown over the past two months, with our army cutting off hot-spot areas and patrolling the streets to ensure that people don't break curfew. The Jewish holiday of Passover was like nothing I have ever experienced, where we weren't allowed to walk more than 100 meters from our homes and everyone had to wear masks. Families weren't allowed to get together for the holiday meal, and supermarkets were out of eggs— a staple in Passover cooking. Our death toll is still small enough that the newspapers are able to write profiles about the victims, so we can mourn along with their families.

I have been pivoting along with everyone else as we navigate this new coronavirus world, but it wasn't as difficult for me to accept the shift. In all honesty, I have been waiting for something to happen since the day I was declared NED nearly two years ago. I've spent every day bracing for bad news, for surprising blood test results, different PET CT findings and ultrasound technicians who purse lips instead of a smile. I made plans with the caveat that they might not happen, be it a trip abroad or date night.

Because as soon as you become a cancer survivor, you are constantly on guard for the possibility of reoccurrence. I had been living in a state of anxiety, tentatively going through my day to day, constantly vigilant and waiting for the other shoe to drop. So, when the shoe finally dropped, when coronavirus roared through our life like a freight train, I shifted back to the familiar. The fight mode I have been so accustomed to, the survivor mindset that kept me afloat during months of cancer treatment, the strength I need to keep us all alive.

One survivor leans on their experiences from fighting cancer to find the strength to pivot during the time of the COVID-19 pandemic.  

Author | Shira Zwebner

Patients with Cancer Should Have the Right to Make Unpopular Treatment Decisions

Cancer and Toxic Positivity

Health & Wellness After Cancer and During a Pandemic

Relying on the Cancer Experience to Pivot During Coronavirus