My Cancer Diagnosis Story (Hodgkin Lymphoma)

“God, these steps are just covered in dog hair and dust and-” 

I feel the amalgamation of debris collect under my Birkenstock, and my foot glides off the step. I feel my stomach fly into my throat, and I scream that pitiful scream that comes out of me whenever I am truly in danger. It is like a baby attempting the sound “ah” for the first time.

My feet slide down “plonk, plonk,” and I thrust forward to try and balance my weight underneath me. In my way is a piece of the wall from an old renovation, and I feel my forehead collide with the wall before my feet make it to a full stop. My head swings back, and I scream again, much louder from the acute pain, and “kerplunk” on my ass. I imagine tiny birds and stars haloing around my head while the true confusion and nausea set in.

I scoot to the bottom of the steps and ignore my roommates’ plights to understand what is going on and if I am okay. All I am trying to understand is if I am going to throw up and if I might need to go to the hospital. I rotate between keeping my eyes open and closing them for many minutes at a time. I know I need to call my mom, I really needed nurse advice, but it was the last thing I wanted to do. 

“I fell down the stairs, and I am pretty sure I have a concussion,” was all I could manage to get out. After 45 minutes, the first wave of extreme nausea came over me, the first of so many to come. “Have you tried balancing?” “No, I haven’t stood up.” “Well, try it.” I gesture to my friend to be there to spot me as I attempt to stand up, and I collapse over the couch and kneel to the ground. “I can’t do it.” “Then go to the ER.” “Okay, talk soon, bye.” “Bye.” 

After an arduous time getting to the car, the drive there, and getting into the waiting room, I finally see the nurse. 

“So you boinked your head, I hear?” She whines with a pouted lip while the aid gets my blood pressure and puts the PulsOx monitor on my finger. 

“Yeah, I fell down the stairs and broke my fall with my head” …is what I wish I said. It took me days to find the right way to describe what happened in that fall. 

I explain the nausea and the poor balance and she asks me “Do you want me to scan your head?” and I said, “Yes, of course.” She rolls her eyes and heads back to order the test and presumably scroll TikTok and doubt other patients seeking help. 

I type everything to my partner thousands of miles away and they call me in for the scan. When I come back, this flawless young doctor comes in to examine me. She asks me the same questions but shows some genuine concern. She lets me know she didn’t see anything of concern on the scan and comes over to feel my neck. I wince as she gently prods and she asks if I hurt my neck.

I said yes but that I wasn’t all too concerned about it and she leaves the room. I start packing up my things, waiting for someone to hand me my after-visit summary and tell me to get some rest with my concussion. The only person that comes is transportation with a wheelchair, they didn’t trust me to walk on my own.

He says he’s taking me to a scan. I said, “What? Are you sure it’s for me?” He uses the radio to confirm the room number and says they wanted to get a CT of my neck. I said “Alright.” But quietly worried there was an error and I would end up forking over the bill. 

I bite off all of my nails and surrounding skin, trying to get out of there as soon as possible as my friend is waiting to pick me up. A new doctor comes in and I see “oncology” on her breast pocket. 

“Sarah, hi, so sorry for the long wait. So here is the situation. We scanned your neck looking to see if you had any broken bones from the whiplash of your fall and found heavily swollen lymph nodes in your neck. These could be related to an infection or an inflammatory disorder but they are also consistent with leukemia or lymphoma. You need to call to schedule an appointment with an ENT specialist as soon as possible. I want you seen by someone in the next two days and a biopsy within a week.” 

I felt a monumental shift inside of me. I had a mission. All of my worries about teaching English and my roommates and living situation fell by the wayside and I knew what I needed to do. I was now in problem-solving crisis mode and I wasn’t going to rest until I knew what was going on with my neck. 

I call my mom as I leave the ER and explain to her what I heard and she is right there with me, united to get answers. As she worked in the hospital system, she knew the ins and outs of scheduling and warned me that just because the ER doctor wants me to be seen that soon, doesn’t mean it will be possible but we will do our damnedest. 

June 26- The Mighty Fall

June 28- ENT “Let’s biopsy you but don’t panic yet. You need someone to coordinate your care.”

June 29th- Primary Care I never believed in having a PCP until I met this one. He cleaned up my chart, asked me countless questions, ordered so many tests, and assured me that we would get to the bottom of this.

June 30th- Pap and the News My PCP gave me a pap smear which was the second most painful procedure of my life only after my non-hormonal IUD placement. And the test results we received so far ruled out infection and this is the day he told me we would look into inflammatory disorders in three months, only after ruling out cancer. 

Between every appointment and every blood test, I took the new information we gained to cross-compare those results to research papers on different kinds of leukemia and lymphoma. It became clear to me early on that my counts were too high for most forms of leukemia so I stopped being concerned about that. All that I wanted to figure out was if I more likely had Hodgkin or Non-Hodgkin Lymphoma. This is the difference between one of the best cancers to have, curable with chemotherapy in most cases, and a much less predictable and more life-threatening cancer. Whether it was B-cell or T-cell related, all to try and understand, am I dying? What would treatment look like?

Based on my age, symptoms, and test results, Hodgkin was a clear front-runner in my mind but the NHLs still terrified me. I learned everything I could about ABVD chemotherapy, and stem cell transplants and watched every video on YouTube of patients with HL and NHL talking about their experiences. I watched lectures from oncologists intended for other oncologists about how they test for each kind of lymphoma and used that to learn how to advocate for my needs. I knew I needed an excision biopsy, not a fine-needle aspiration so when they offered me a needle biopsy, I of course accepted it but prepared myself for a second biopsy to confirm. 

My mom was talking with all of the nurses she knew in oncology to help her instruct me on what to do next, what tests may need to be ordered, and what the future might look like to help me move through the process as quickly as possible. 

My mom and sister and grandmother drove me around to all of these appointments and bought me meals where we could debrief and share our concerns and our hope. 

I had six medical appointments in less than two weeks, countless phone calls and MyChart messages until three weeks after my hospital visit, I had my first needle biopsy. 

In the waiting room for this biopsy was the first time I was told directly, “We need to let you know, we are testing you for lymphoma, that’s what we are concerned about.” He asked me what I knew about lymphoma and I spewed to him everything I knew about the different biopsy types, Hodgkin vs Non-Hodgkin Lymphoma, treatments, and stem cell transplants. 

On the biopsy table when they asked for my informed consent, the doctor said “Of course, we will go through the procedures but she could explain this biopsy to me.”

For the next four days, all I did was eat, read articles, watch videos about lymphoma, and talk to my friends and partner. I barely slept and I tried to stay as busy as I could. I got meals with my grandmother, I paced around the house, listened to podcasts but I found myself drawn to the bed learning about lymphoma over anything else. 

July 23rd- The Call

My doctor calls me on a Sunday afternoon.

“...Hey Sarah.” 

“Okay, it’s bad news. Is it Hodgkin or Non-Hodgkin?!”

“It’s Hodgkin.”

“OH THANK GOD! Oh my - “ “It’s cancer but it’s a good cancer, you’re gonna be oka-” “-god. Yes, oh dear god yes!!”

“Thank you so much, I have to go tell everyone.”

“You do that, I am so happy that you understand and that you’re happy.”

My best friend’s dad was the only one home and I screamed into the next room to him, “It’s Hodgkin! I am gonna be okay!!” And he screams “Yes! Thank Jesus Almighty!” 

I call my mom and my sister and email my grandma to come over as soon as she possibly can. I call my partner and best friends and tell everyone “I have cancer but I am gonna be okay!!” It was the best news I could have given them and I cry to this day thinking about how much joy I experienced when getting my cancer diagnosis. I was over the moon. This to me is the power of education. I understood that there were so many worse possibilities ahead so when I got my news, I could not have been more grateful.