Hodgkin’s Lymphoma Diagnosis
“Whether we want to admit it or not, we all live thinking that bad things can’t happen to us. We make choices we think will protect us. We think that as long as we are ‘good,’ we are invincible. But we are wrong. Cancer doesn’t discriminate. It doesn’t favor a specific demographic. It doesn’t only prey on the weak or the old. It doesn’t care if it’s not a good time. It doesn’t care about how many good foods you eat or how often you exercise. It can come to any one of us at any time. It happened to me. It can happen to you. Maybe it already has.
On February 2, 2016, I was diagnosed with stage 2a Nodular Sclerosis Hodgkin’s Lymphoma. It was five days after my 34th birthday and one year after my older brother was diagnosed with the same cancer, which is not known to be a genetic cancer, at the same age of 34. Prior to my brother’s diagnosis, we had no family history of cancer. We were both in good health and of healthy weights. We were both doing everything we thought was right for our bodies, but it didn’t matter. Again, cancer doesn’t discriminate.
First Signs Of Cancer
I first felt symptoms in November of 2015. I developed a strange feeling in my throat. It felt like I had swallowed pieces of an apple that were stuck in the base of my throat. My glands also felt swollen, and I thought I was coming down with a cold or ear infection. I went to my primary care physician (PCP), who diagnosed that I probably had a viral infection, but I was told to come back in a month if it didn’t clear up. Throughout the month of December, I continued to have the weird feeling in my throat, as well as just generally not feeling well. Over the holidays, I knew in my gut something was really wrong in my body, specifically my neck. After spending hours researching symptoms on the internet, I remember turning to my husband from my computer screen and saying, ‘I think I might have thyroid cancer.’ He said, ‘That’s crazy.’
In January of 2016, I went back to my PCP and described my symptoms again. She did a blood test and sent me to an ear, nose, and throat (ENT) doctor. I went to the ENT, who looked down my throat with a scope but saw nothing. He claimed acid reflux was causing the discomfort in my throat and put me on reflux medication. Unconvinced I had reflux, I went back to my PCP. She noted that my bloodwork was a bit off but thought I might have a bacterial infection and wanted to put me on antibiotics. Still convinced it was my thyroid, I insisted she do some imaging on my throat, so an ultrasound was ordered.
The ultrasound results revealed that my thyroid was fine, but my lymph nodes at the base of my neck were enlarged. Once I heard ‘enlarged lymph nodes,’ and based on my brother’s similar diagnosis, I knew I had Hodgkin’s lymphoma. Considering it was not known to be a genetic cancer, it had never even crossed my mind I could have it until that moment. I insisted that my PCP do a Computerized Tomography (CT) scan of my chest. I knew she would find a mass.
The day after my scan, I went back to my PCP for the results and brought my husband with me for support. As we sat in the examination room, holding hands, anxiously awaiting the results, there was a deafening silence in the air. When the doctor finally entered, she started with, ‘Well, the results aren’t good.’ My heart dropped to the floor. I could hear her talking, but the words sounded like mumbling sounds in my ears. While the results were not completely surprising to me, they were still shocking nonetheless. They revealed a mediastinal mass tumor, a growth in the area of my chest that separates the lungs, and enlarged lymph nodes in the neck. I was referred to an oncologist and scheduled for more tests.
When the doctor left the room, my husband and I just sat together, held hands, and cried. We were convinced I was going to die. We talked about places we might want to visit and how I might want to spend my time, if it was limited. There are really no words to describe what that shock is like. I felt a whole mixture of emotions. Part of me was relieved. I had known something wasn’t right in my body for several months but couldn’t prove it. I finally had evidence I was right! However, I was now venturing into a new, scary unknown with hundreds of questions. Just how bad was it? Was cancer rapidly spreading through my body? Was I going to die? Why didn’t I use my time on Earth to do more pleasurable things? How could I die without ever visiting France? Why was this happening to me? What did I do in life to deserve this? What will treatment be like? Will I lose my hair? Can we afford treatment? How badly will it mess up my child if I die? How will I work full time and battle this disease?
The first thing I did once we got into the car was call my brother. I was hysterical, barely able to share the results of the CT scan, choking on each word as it came out. With an unbelievable calmness, he said, ‘Don’t panic. You don’t know any details yet. Wait until you have your other tests done.’ He described what the next series of tests would most likely be like and told me to try to remain calm until I had those results. The monumental gratitude I had for his comforting words that day and for him to be able to guide me was indescribable.
February through May were a blur. I went through four cycles, eight treatments of the chemotherapy cocktail ABVD, which is four different chemotherapy drugs. I continued to work full time and carry on my duties as a mom and a wife, but I never really processed what was happening to me until much later.
After four months, I went into remission. However, just a few weeks after chemo ended, I started experiencing some shortness of breath and was hospitalized for three days and eventually diagnosed with Bleomycin Lung Toxicity, which was a potential side effect from one of my chemotherapy drugs, Bleomycin. I knew it could happen, but you never think the side effects will happen to you. Plus, I had been monitored with Pulmonary Function Tests throughout my chemo and didn’t think my lung functioning was declining, but apparently it was. I quickly discovered not a lot is known about Bleomycin Lung Toxicity and there’s no definitive test for it, it’s a matter of ruling out other things. I got a lot of mixed information from my doctors and was scared about what the future looked like. My brother had been able to walk me through my cancer and chemotherapy but now I had entered uncharted territory. I was put on a heavy dose of steroids for the next 4 weeks with the hopes that my lungs would recover, which luckily, they eventually did.
Living Life To The Fullest
When I was first diagnosed with cancer and wasn’t sure how bad it was, I felt a tiny pang of regret that I hadn’t traveled more and seen more famous landmarks. When I was diagnosed with a second potentially deadly disease, the Bleomycin Lung Toxicity, my regrets were much more simple. All I could think about was how much time I had spent doing the things that were expected of me by society (like attempting to make a lot of money, taking jobs I never really wanted in the first place, spending countless hours at the gym for that never-achievable perfect body, etc.) and not indulging in the things in life that really gave me pleasure. I thought, ‘Damn, if I end up dying, I’m going to be so pissed I wasted all of this time eating freaking kale when I could have been eating cake.’ I vowed to stop being so hard on myself, to take the time to relax more often, to give myself more time to explore my passions…and to eat more cake (in moderation, of course)!
I embarked on a new, somewhat unconventional path to live and experience everything to the fullest. Once you’ve had cancer, there is no going back to your old ‘normal.’ There’s only adjusting to your new ‘normal.’ I always felt somewhat like an outsider and this new life experience only amplified that, so I had no choice but to accept it with open arms. Being diagnosed with cancer at a young age can be isolating. Medical professionals look at you like you’re an anomaly. People who haven’t ever had cancer or know someone who has question you about what you did wrong to ‘get’ cancer. There is a stigma with cancer that surrounds you, your lifestyle, and your family. Due to hair loss from chemotherapy or scars from ports or tissue or tumor removal, it can also be a very public disease that is hard to hide, especially for women who often have certain societal expectations on how they should look and whose appearances are more prone to public scrutiny. Because of this, people feel compelled to advise you on how you should react, look, and feel.
A few months ago, my husband and I went out on a date to our favorite bar. During the evening, three women in their early 50’s having a ‘ladies night out’ sat down next to us at the bar. My husband and I were chatting and laughing and pretty wrapped up in our own world, when at one point, one of the women leaned over to my husband and asked, ‘Did you give her that hickey on her chest?,’ referring to my uncovered port scar. Typically you can’t see it, but on that night, I had on a low cut dress I know my husband likes. My husband said, ‘No, she had cancer and that is her port scar.’ You would think that statement alone would make the ladies feel dumb and intrusive and they would leave us alone, but sadly, it didn’t end there. They proceeded to ask me how I ‘got’ my cancer, and then told me I should get a tattoo to cover up my scar. Normally, the sassy, hard-knock Flint, Michigan, girl in me would say something smart-ass, but I was caught unguarded. I was tipsy and having a nice time with my husband. I wasn’t prepared to make a statement. I tried to be as graceful as possible while I answered all questions and explained that people don’t always ‘get’ cancer from something specific, and that I didn’t think my scar was ugly and didn’t want to cover it up. But I have to tell you…they got to me. It breaks my heart every time. No matter how many times it happens (and this wasn’t the first time and most likely won’t be the last) it’s never easy to be the subject of ridicule, but I do get stronger each time it happens. I am proud of who I am and what I’ve been through and all of my scars. I will never cover them up because I want people to KNOW me. I want my scar to be a sign for the special few who know what it is to come up and talk to me and be able to share their stories with me without judgement.
Life In Remission
Remission seems to be very misunderstood by people in the medical profession, people in our communities, friends, and even family. There’s one nagging thing that haunts those of us who have survived cancer or a major illness. It’s a siren, ringing a message in our ears that regular people just don’t seem to hear like we do. The message is: We are vulnerable. Sounds simple, but it isn’t to someone who’s never encountered a major illness. I might dare to say that even our dearest caregivers don’t fully comprehend it. You can label it PTSD or categorize it however you please, but the siren’s message remains the same and it’s tough hearing it day in and day out. We have to adjust to life knowing we are not in full control and time really is precious. We can no longer write off tiny aches and pains as minor infections or waste our time at dead-end jobs. We are acutely aware that our time is limited. We feel pressure to make the most of our good health and time on this planet, and that is tough to do when bills must be paid, dinners need to be cooked and errands must be run. The best therapy for coping during remission is really through human connection and learning how to best balance what we’d like to do with what we need to do. Hell, that’s probably the best therapy for everyone! We can do it though. We are smart. We can prioritize. We can learn what we need. We can accept help when we need it. We can love and be loved. We can be tough. We can forge ahead. And we can be vulnerable.
Luckily, I have a very supportive husband and son at home, and an older brother who was able to guide me through various parts of my diagnosis and treatment. However, my brother doesn’t live nearby, which sometimes makes communication difficult. When I was first diagnosed, I looked for a local support group for young adults with cancer but was unsuccessful. I often felt like an alien in my own community because I couldn’t find anyone with cancer to connect with nearby. As a result, I turned to social media and started an account specifically for all things cancer related. I started searching for complete strangers who had been through what I was going through. I posted pictures of what was happening to me with captions that described my thoughts and feelings. It’s not in my nature to sit around feeling depressed, so I tried to keep it somewhat upbeat and humorous. But being sick is not fun or funny, so I wanted to show the rough times as well. Through social media, I found an unbelievable community of people who were understanding and supportive. It became therapeutic for me to share and allow other people to share in on my experiences.
Starting A Cancer Support Group
Although I loved my virtual community, I needed to connect with other cancer survivors in real life as well. I decided to start a local cancer support social group for young adults under 50 with cancer. I drove around to various coffee shops and businesses to put up fliers and contacted the local newspaper to write an article to help me spread the word. Luckily my efforts were successful and slowly, I started to find my people.
It has now been three years since I first heard the three life-changing words, ‘You have cancer.’ I’ve learned a lot about myself over those past three years. I’ve learned how strong I can be and what the human body is capable of. I’ve learned about my limitations and how and when to ask for help when I need it. I’ve learned a lot about humanity and the kindness of strangers. I’ve learned how to slow down and take one day at a time. I’ve managed to keep my sense of humor intact, despite being exposed to the completely unhumorous, ugly world of cancer.
There are still days I struggle with extreme anxiety and fear. Remission is not as easy as it sounds, but I have a great support system and have learned some amazing coping mechanisms that help in those dark times. I know that everyone, including myself, is vulnerable to cancer but I don’t let that fear control me. I’m optimistic. I haven’t given up hope that my child will one day to live in a world where instead of only treating cancer, we are able to prevent it.
It is truly amazing to be alive. Every day I’m able to wake up and take a breath, is a good day. Every birthday I’m alive to celebrate, is a good one. Every season in life comes with its challenges and victories, but I feel lucky to be able to experience them all. I wish I could box up that kind of gratitude and give it to everyone I know, but some things in life need to be experienced in order to be understood.”
This story was submitted to Love What Matters by Lisa Zacks of Williamsburg, Massachusetts. You can learn more about her experience with cancer on her Instagram. If you live within 30 miles of the Northampton, Massachusetts region, you can find her Facebook page, ‘Girls On Chemo,’ and ask to join. She only accepts local cancer patients and survivors.
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