This month, September, is Blood Cancer Awareness Month. Five years ago this month, I called a doctor about a cough I couldn’t explain, and began a battle against non-Hodgkin’s Lymphoma. Which means I’m about five months away (okay fine, six) from celebrating five years in remission. At five years out, my chance of recurrence is practically nothing.
This isn’t the full story of my battle, this post only covers the very beginning. The hard truth is that I lived for months with symptoms. They began when my daughter was five months old. Because I was a new mom, I was able to overlook or rationalize away almost all of the classic red flags, attributing them to postpartum shifts.
But the end of this battle comes full circle, on the day my second child was born – exactly two years and nine days after my last round of chemo. When I delivered a healthy baby after everything my body had recovered from, it was officially the end of the fear, pure terror, and anxiety that Lymphoma had brought into my life.
So, to mark this month of awareness and my milestone as a survivor, I’m sharing how I experienced these textbook symptoms of non-Hodgkin’s Lymphona. Because what I didn’t know five years ago is a lesson someone else could learn today.
I remember the first, worst one. I woke up in my sister-in-law’s guest bed so completely drenched that the sheets beneath me were soaked. My husband next to me didn’t notice my squirming. My five-month-old daughter in the Pack ‘n Play nearby slept soundly while I fumbled through my suitcase to find fresh pajamas. I thought to myself as I tried falling asleep on damp sheets: “Damn, this is a heavy comforter.” It was May in New England.
The night sweats continued regularly for the next several months. Each time I rationalized them away.
“My hormones must still be swinging after the baby.”
“This bedroom gets so hot in the summer.”
“I need to change my diet to figure out what’s causing this. I’m eating way too much sugar.”
I know what fatigue is. It’s that first time parent “just making it” mode of keeping a fragile human alive, being a good partner to your spouse, breastfeeding and pumping, working full time, maintaining friendships, searching for (and rarely finding) time to yourself, and rolling with every punch that is aimed squarely at your face.
I first felt a different kind of fatigue not long after the first night sweat. The energy I then considered normal with a five-month-old was off, but I couldn’t point to why or how. It was unsettling enough to go see my primary care physician in June. No answer to any of his questions gave the doctor reason to share concern. My blood work came back normal.
I was extremely fortunate that my daughter was a good sleeper. She easily slept through the night at this point. I distinctly remember sitting on the bed after work when she was seven months old feeling completely fatigued, which, if you really know what fatigue is, you know it’s different from exhaustion from a trying day. In that moment I thought, “I’m sleeping seven hours every night, and sitting at a desk all day long. Why am I so tired?”
At my first oncology appointment after my diagnosis (diffuse large B-cell Lymphoma), my doctor ran down his checklist. But I couldn’t just answer yes to each one, I had to give justification as to why I was so oblivious to what had been happening.
Dr: Have you had night sweats?
Me: I thought they were postpartum hormones
Dr: Have you felt fatigued?
Me: I’m a new mom
Dr: Have you lost 20 or more pounds recently?
Me: I thought it was from breastfeeding.
I really and truly did. I thought the hype was real and that breastfeeding was the ultimate calorie burner. I was thinner than I had been in a long while and people were noticing and complimenting. No one said I looked sickly. I just happily and graciously accepted the comments as fact. At this point, my daughter was 10 months old and exclusively fed breast milk. I definitely wasn’t exercising, and I wasn’t putting any thought or care into my diet. Hence why I thought an abundance of sugar could be contributing to night sweats.
Back to the checklist…
Dr: Any unexplained fevers?
I couldn’t explain or rationalize those away. They were always low-grade, barely cracked 100 degrees, and if I noticed them at all, it was on a weekend when I wasn’t going 100 mph. Once I started noticing them more frequently is when my subconscious started raising flags.
I have both anxiety and an active imagination. Around August, I started imagining full fledge scenarios of my demise, none of which were attributed to cancer. The same tragic delusion would creep into my psyche and re-run again and again. It would bring me to tears while driving home or falling asleep at night thinking of my daughter growing her whole life without me.
But even that didn’t bring me to call a doctor.
It was the cough. In mid-September I couldn’t shake it, and this strange sensation vibrated in my chest when I lay on my side. Finally, my rib cage felt so out of whack that I left work in the middle of the day to get a massage. When the masseuse kneaded the muscles below my right collarbone I immediately coughed like she was testing a reflex.
Only then did I schedule an appointment. I told the scheduling nurse about the cough and how it felt like I couldn’t take a full breath. Did I have shortness of breath, she asked. The exam room they led me to was set up for an EKG. I looked at the nurse puzzled: “I think I just need a chest x-ray.”
The doctor then showed me a mass on my lung the size of an avocado. The CT report later said it was likely a thymoma but could also be a malignant tumor.
I won’t get into the terror-riddled tailspin I went into from that moment on. I pulled myself out of it once I had a lab-confirmed diagnosis, a treatment plan, and an INCREDIBLE doctor. But, it had taken two thoracic surgeries to get me there.
My oncologist was beside himself that I had to go through surgery, not once, but twice. The second, a full thoracotomy, removed the mass that had grown to the size of a small basketball. I was told with most cases of lymphoma, surgery isn’t necessary as chemotherapy can take it out. The surgery had removed about 80% of the cancer, but I still had six rounds of treatment to go. Had I known sooner what these changes to my body really were, then maybe a lot of undue stress on my mental and physical health could have been alleviated, not completely, but sooner.
And still, it took me five years to want to tell this story. For so long, I wanted to forget that it had even happened. I wanted to be a normal 30-something whose immune system hadn’t betrayed them. And now, I realize that my mind and body are more resilient, having fought something away with such strength. Though, more credit belongs to the dozens upon dozens of people who took care of me at UAB. I really just did what they told me to do and held on tight. That story, with the millions of thank yous that come with it, is for another day.