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My First Year with CML

Written by Isabel Munson on April 17, 2017
chronic myeloid leukemia

In October of my freshman year of college, I thought I had mono.

My neck was hurting, lymph nodes swollen out of this world. I was sleeping constantly, awaking to sweat-soaked clothing and sheets. I could barely swallow liquids comfortably, and I’d been experiencing what I thought were unrelated pains in my bones. I was limping around campus babying whatever body part was hurting that day, and I kept getting sicker. I was icing my hips and knees with frozen vegetables, thinking the pain must be from working out.

I had many other symptoms that I didn’t notice as related, like a swollen spleen and petechiae, very small blood-filled dots all over my body. I went to the health clinic for the first time and was told, “It might be mono, but we can’t really do anything if it is.”

I got sicker to the point of not being able to do anything besides attend class and sleep. I returned a few days later to the clinic, forcing staff to perform a blood test to check for mono.

The next morning, I awoke to a number of missed calls and voicemails from the health center, campus police, and more. They had received my white blood cell counts and wanted me to go to the nearest ER immediately. I learned later the campus police went to my 9:15 a.m. class to search for me — I wasn’t there, as I’d slept through it.

In the voicemail from the health center, they said the white blood cell counts indicated either a bacterial infection or some kinds of cancer. I didn’t find this information hugely reassuring, but I also wasn’t freaking out. (What’s the point?) It helped that I’d ruptured my appendix two years before and had already gone through a frantic “go to the ER because we’ve seen your white blood cell counts” situation.

I was at college in Boston, quite far from my hometown of Dallas, so I just went to the ER and waited to hear what was wrong. The doctors and nurses took pains to assure me that if I had cancer, it was probably not a “very serious” kind. They had barely found any “blast cells” in my initial blood samples, which indicated I probably had an early stage of leukemia.

While I was definitely worried, I was alone in a city far from home, with my roommate and a distant cousin as bedside company. Breaking down didn’t really feel like an option as I waited in the ER. Later that day, I was admitted into the oncology wing. While I hadn’t received any diagnosis, I knew this didn’t bode well.

Now what?

I didn’t receive an official diagnosis until the next day, after doctors received confirmation from my bone marrow biopsy. My mom had arrived from Texas just in time to hear the grand pronouncement. I wanted to cry as the doctors told me, but there were at least three or four medical professionals in the room, and I fought to suppress my emotions and ask questions (they had made no motions to leave).

This was a theme throughout those early months after diagnosis. Other people needed me to be OK with it, as they were worried about me. Plus, no one actually has helpful advice or words to offer. Or at least in my experience, I didn’t feel better based on anyone else’s assurances.

So I mostly tried to have a reassuring attitude, which can be very draining when you do NOT feel that way. I cried here and there, mostly when blood was being taken. But really, the process of diagnosis was so full of visitors and doctors that I had very little time to sulk, as I would have preferred to do. This was probably a blessing — to have no time to be upset, rather than sitting alone in a hospital room feeling upset.

Moving forward

The first weeks and months were difficult. I was readmitted into the hospital twice more with an unidentifiable sickness, most likely just a run-down immune system. I was trying to make up schoolwork and get through my first semester of classes, all while fighting such fatigue that a flight of stairs felt like an hour-long workout.

This time would have been easier if I hadn’t been in the middle of starting college. Diet and exercise really decrease fatigue and side effects. Although I wasn’t in a state to exercise, having a better diet during those first few months would have been helpful.

I was living in a dorm, and eating Mexican fast food, sandwiches, and frozen meals. Not ideal. I spent my second semester trying to pretend I wasn’t sick and could party or stay up late. (Not surprisingly, this resulted in me feeling terrible all the time.)

It wasn’t really until the next summer that I started to prioritize my health and focus on the diet and exercise and sleeping. I felt so much better. I am lucky that my body has responded well to treatment — I take nilotinib (Tasigna) — and it’s been smooth sailing since those first few months. I have few side effects, mainly just fatigue. But I think everyone gets tired, right?

Looking for support

I was far from family during this time, although my parents came up a few times when I was in the hospital. I had grudgingly joined a sorority weeks before diagnosis, which turned out to be a saving grace. I didn’t have many actually friends at that point — the school year had just begun — but these women gave an outpouring of support.

I had dozens of hospital visitors, and people willing to go with me to doctor appointments and let me hang out in their dorm or apartment. I can’t imagine having gone through that experience without those women there. It very well may have resulted in me dropping out for that semester.

Even with all those friends around, trying their best to help, I still felt extremely alone and scared.

My takeaway

I’d say the most important thing to my outlook about CML has been having hobbies and passions. It was an unexpected diagnosis that meant I would have to live my life a bit differently than I imagined.

However, as I found a love of writing and music over the subsequent years, I came to be quite grateful for the changes brought about by CML. These forms of expression help me navigate feelings of isolation and the ongoing anxiety of chronic illness.

Your hobby could be anything, but especially after diagnosis, it’s nice to have some activities to do rather than laying around feeling sad. (Nothing wrong with that, for the record. Take your time to process emotion as you see fit!)

It’s hard not to feel alone after diagnosis, especially if you haven’t found patient resources that organizations like The Leukemia and Lymphoma Society offer. They provide so many kinds of patient and caregiver support. My diagnosis was very hard at first, but I’m now grateful to have learned to embrace life, not take unimportant things too seriously, and fight to create the life I want.

Isabel Munson, 22, is a writer, researcher, producer, and DJ currently residing in Brooklyn, New York.

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