Stories

Mary

Mary, 26, was working at a tech company in San Francisco and getting ready to move back home to New York when she learned lymphoma would necessitate making other plans. 

I had been dealing with a cough for about eight months; not a bad cough, but constant. I finally went to a doctor, but he wasn’t alarmed. Then I developed a symptom where if I took even a tiny sip of alcohol, my back would hurt. I looked it up, and it was a symptom of Hodgkin’s Lymphoma, but I didn’t think I had cancer. One doctor thought I had acid reflux, and then I was tested for TB, which came back inconclusive. Finally, a chest X-ray confirmed I had some kind of tumor. The technician was very casual when I arrived, but after he took the first image, came running over and asked if I had been coughing blood. That’s when I knew something was wrong. I was pretty scared. And I was alone—I hadn’t told my parents anything, since I didn’t know yet what it was.

At that point, I knew they were suspecting cancer. First, I had CT scan and then a lymph node biopsy. It was Hodgkin’s Lymphoma. I had a 9 cm tumor on my lung and I had other tumors throughout my torso. The largest was the one that hurt with alcohol. I immediately started thinking about logistics—not about my health—and the mess I was going to be in, asking for my job back, etc. Then I pulled back and wondered what it meant for me and my body for the next year? Thankfully, Hodgkin’s Lymphoma chemo outcomes are pretty good and relapse rates are low. It was hard to explain to people how I felt. I have a really strong will, which served me well when I had the bad days, but also served me badly since I could have gotten things checked out sooner.

Tears and Frozen Eggs

When I called my parents, my mom cried and couldn’t speak. I knew that whatever I felt or expressed, she would feel twice as much, so I had to hold back some of my emotion. Luckily it never really got that bad, but I had to wonder how honest I could be. Some people suggested that therapy could be helpful, in case I felt like I couldn’t talk to my parents about things. It was a good suggestion and I ended up doing that every other week during treatment.

I also decided that I wanted to freeze my eggs to protect against damage from chemo. I did a quick harvest and freezing process. My first call with the fertility doctor was overwhelming since I never had any health issues before and it was so much to process. I was going to fertility checkups, looking for a new apartment, since I had already given up my lease, and was still working while getting tests.

My parents came out and took turns taking care of me, and my mom came to most appointments. The chemo days started off easy, but became harder, so Mom and Dad would cook and try to make it fun. It would get tough as soon as they left. I had a lot of problems at the hospital, too, which was a stressful part of the experience. There was confusion over communication; orders that nurses saw would differ from what the doctors prescribed—a potentially dangerous system glitch; and I would get double billed; among other things. It wasn’t organized. My mom was upset; she felt that her kid should get the best care.

Bone Pain and Mouth Sores

I had a mixture of chemo over the course of six months. Relative to other treatments, it wasn’t terrible. Three to four days after I would start to feel symptoms of mouth sores, nausea, and fatigue. My white blood cells were always low when I went in to get cell counts before chemo, so I needed Neulasta shots, which created bone pain. That was the worst. But mostly, I made lemonade out of the lemons, but I didn’t realize how bad it was. I dealt with all those bad symptoms for almost a year.

I’m a data analyst by nature, so one of the big questions I had at the beginning of treatment was about the numbers. What are survival rates? What side effects do most people have? What’s it really going to be like? On the first day of chemo I had a 50-page list of all the symptoms one might have, which wasn’t that useful. So, I spoke to other Hodgkin’s patients, which was.  Of course, everyone is going to be different, but there are common threads.

Making Changes

As soon as I was diagnosed, I got a pixie cut, which was freeing. I kept most of my hair until month four, when it rapidly began to fall out, leaving bald spots, so I cut off all my hair. The first hair to go was the armpit hair, so I was psyched about that. Then I lost my eyebrows and eyelashes and had nothing for 2 months, but I didn’t experience any chemo brain or fogginess.

When I’d get out of the shower with no hair, no eyelashes, and a port, I was exhausted. Everything felt wrong, but I reminded myself that I was lucky and was going to make it. Looking and feeling this way was only temporary. I thought about people who I saw during chemo, who were maybe being treated with less certainty and how it could’ve been much worse for me. I worked throughout chemo, only taking off the day of treatment and day after. There were some days at work where I felt so bad that it might have been better to go home. But it was good to stay in San Francisco and continue to work, to continue my life. I feel great these days. My hair grew back, and I can go out or work a 12-hour day again. I didn’t realize how deep in the hole I was.

Getting Back on Track

Since finishing treatment, I haven’t thought about relapsing or anything. I’m still in celebration mode. I have dreamt about the cancer coming back—which I do worry about—but the relapse rate is 10%, followed by hospitalization and intense chemo. Survival rates are still pretty high after that, and I don’t feel like my life is in danger, but I would have to redo everything that I just did. I’ve rescheduled my life so that I can continue on to business school and then go hiking this summer. I just put life off for a year.

This experience has changed how I think about things. The big takeaway is to go to the doctor, check in, and take care of yourself. I have newfound appreciation for family and friends; the way people reacted to my diagnosis, the friends that gave me a pump-up speech before every chemo. I had some friends that sort of shied away, and we barely speak despite our prior friendship. I’m trying to give people the benefit of the doubt and am not going to judge their behavior, because who knows what they’re going through? But it helped me figure out which people I want to surrounded myself with and what kind of friend I want to be in return.

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