Three Things I Wish Someone Told Me Before Lymphoma

It's amazing, the memories that stick with you. The moments in your life that seem to crystallize as you remember a particular day; so real that it could have been yesterday or 11 years ago. Regardless of the passage of time, there's a memory, a story that you will always be able to tell with clarity and detail. Even with your wonky chemo brain

I had surgery to remove some lymph nodes on Wednesday, May 4, 2011. These lymph nodes in my neck had been bothering me since October 2010. I had done all the tests: blood tests, ultrasounds, CT scans, and a fine needle biopsy. All the tests came up negative with nothing out of the ordinary. Since the lymph nodes were still bothering me in April, my ENT (ear, nose, throat) doctor suggested that I have them surgically removed. So, I had surgery on May 4th. I was sitting in the recovery room and the doctor came in to tell me how the surgery went. He said that everything was fine and they were sending the nodes out for routine biopsy. I remember being concerned when he said that, but he told me it was nothing to worry about. So I traveled home to rest and recover. 

Two days later, my doctor called. I even remember the time, 12 PM on a Friday. He was preparing to head out for the weekend but wanted to check in and see how I was doing. My naïve brain thought, “Oh, what a sweet doctor,” but the truth was, he was calling with the results of the biopsy. You already know the outcome, you're reading this blog on He said the biopsy showed I had nodular sclerosis Hodgkin's Lymphoma. He didn't even have to use the "C" word for me to know that this was a type of cancer.

Everything said after those words is kind of a blur. I remember him telling me not to spend all weekend Googling my diagnosis. Yeah, sure doc. You call at noon on a Friday, drop the "C" bomb, and expect me NOT to spend my weekend looking it up?! To my credit, I think I made it until Saturday before I started researching my diagnosis.

My first call was to my husband. I didn't know how to break the news. He answered from the restaurant where he was grabbing lunch, and I just broke down. I managed to get out that Dr. Smith had called to tell me I had cancer and that he needed to come home. 

What followed that frighting phone call was the usual flurry of appointments and tests you undergo after a cancer diagnosis. My oncologist told me I had 6 months of chemo, 1 month of radiation, and then it would be like I never had cancer! HA! I completed my chemo and radiation and even threw a no more chemo/cancer party! Exactly one month after I'd finished radiation, I went in from my first CT scan. When I woke up that morning, I felt a lump on my neck. I tried to stay calm and focused all morning before the scan, but I already knew what had happened. Sure enough, my cancer was back on the other side of my neck. My doctors and I played Whack-A-Mole for the next two years of my life. We'd get the cancer in one spot just for it to show up somewhere else. Chemo, radiation, one stem cell transplant. More chemo, more radiation. It was like being stuck on a time loop for two years straight. Finally, I had a full bone marrow transplant with marrow from an unrelated donor, a complete stranger.

There was so much I was unprepared for when I entered the world of cancer. So many things that I had no idea that I would experience when I received that initial frightening phone call. Here are the top three things that I wish someone had told me before I was diagnosed with Hodgkin's Lymphoma. 

1. You don't just lose the hair on your head, you lose your hair EVERYWHERE. 

I wish someone had prepared me for the truth about my future hair loss. We all know that a possible side effect of cancer is losing your hair. I was not prepared for the fact that I would lose hair all over my body, not just on my head. Eyebrows, eyelashes, arms, legs (ok, I loved not having to shave for two years!). No one tells you these things. I had fooled myself into believing that I was still okay during cancer treatment, even when I was bald as a cueball. That changed the first time I looked at myself in the mirror and realized I had no eyebrows and about two eyelashes. That was it. It broke me. At that moment, I said, out loud, "Holy shit, I have cancer." I had no idea that not having eyebrows would break me the way it did. 

2. People's comments hurt even if they believe the comments are supportive. 

I wish someone had taught me how to handle the comments people would make. I know some people don't know what to say. They think what they are saying is supportive or helpful, but it's just not. Random strangers even told me how they "wish they were brave enough to cut their hair like mine." A polite thank-you would have sufficed, but I was new to the short 'do (I had cut my hair before going bald) and was quite bitter about losing my hair. I replied, "Yes, well, cancer has a way of making you braver than you think you are." I'll let you decide what you think my tone was. 

3. You will have plenty of scars, both physical and emotional. Therapy is a must. 

I wish someone had prepared me for the scars cancer would leave behind. Not just the physical scars, but the emotional scars. I struggled to recover mentally from my bone marrow transplant and finally asked my oncologist for a therapist referral months later. Without judgment, he looked at me and said "Of course, you need to talk to someone. You have PTSD from the past two years."

No one tells you that cancer will leave these emotional wounds and scars. I'm not even sure if my scars will ever heal. Just because I survived my cancer doesn't mean I've healed. I also say survived, not beat. Did I beat cancer because I'm alive eight years later? Yeah, if that's how you want to look at it. But honestly, there are days I'm convinced cancer won. My cancer treatment left me with end-stage renal disease, forcing me to be on dialysis for the past eight years. My cancer treatment also left me with pulmonary issues which renders me unable to ever get a kidney transplant. Don't get me wrong, I am so grateful to wake up every morning, cancer-free. Nevertheless, the emotional toll it took and continues to take on me is why I don't know if I necessarily beat cancer. 

Photo courtesy of author.