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DLBCL, HipsterMom Confessions

29 May 2019

Chemo Brain

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She pushed the IV pole past the doors to the hematology-oncology unit quickly and with determination. At 9:00 a.m. on a Tuesday morning, the ward is teeming with people waiting for their nurses to take their vitals and hook their PICC lines and ports up to bags and bags of life saving treatments. She was a blur of blue and pink, her tightly wound mitpachat raised inches above her head, giving off a taller appearance. Her white sneakers practically danced across the floor as she wheeled the IV pole towards her patient.

 

“I can’t remember her name,” I whispered to Gaby. “Can you?”

 

She was gone before he could look up from his phone.

 

The frustration starts in the pit of my stomach and spreads upwards towards my face. I furrow my brow and concentrate really hard, trying desperately to remember her name. Not only was she my nurse occasionally during my weekly Tuesday visits to the hematology-oncology day clinic at Shaare Tzedek Medical Center, where she patiently cleaned my PICC line, took my blood pressure, and attached bags after bags of chemo to my body. But, she was also a nurse on the 7th floor when I was hospitalized for 16 days last May. She helped me to the bathroom on more than one occasion and came quickly to assist me when I was all-alone.

 

“Tami is the little blonde nurse from Katamon. Miriam is the nurse who was mean to me. Tzipi is the nurse whose sister used to work with you….”

 

I use my fingers to tick off the names of each nurse who helped me last year until my voice trails off.

 

“Why can’t I remember her name?”

 

This is the reason we find ourselves back on the 6th floor, on a Tuesday in May. Two days from what will please g-d be my very first cancerversary, I have a meeting with a neurologist to try to explain these cognitive challenges I’ve been dealing with for most of the year.

 

Chemo brain is real, and I’ve been struggling with it for 12 months. We ignored it at first and explained it away. I didn’t sleep well the night before was the reason why I couldn’t figure out how to put on our electric stovetop. I’m stressed with work was the reason why I couldn’t remember the name of our daughter’s best friend. I’m distracted and overwhelmed with the holidays/birthday season/after school activities were reasons why I made mistakes at work. Wyatt woke me up at 5:00 a.m. to go potty was the reason why I couldn’t remember what an umbrella is called.

 

We check in at the front desk and are sent downstairs to an appointment with a neurologist. I tell her that I feel like I have early onset Alzheimer’s and she takes ten minutes to review my medical history. I tell her I’m pretty sure I just have Chemo brain but it’s extraordinarily frustrating. I explain how I’ve socially sequestered myself at home because I’m embarrassed that it takes me longer to get sentences out, that I make multiple mistakes when I’m speaking, that I sometimes can’t remember the names of our friends.

 

The neurologist administers a cognitive test: draw a line though a number a letter and another number in order. Draw a 3D rectangular box. I complete both tasks easily and wait for the test to get harder. She points at photos of a giraffe, bear and hippo and asks me to identify them. I get them all right. Then she asks me to repeat five words and remember them: banana, truck, violin, green, desk. I repeat the words and we continue with the test. I repeat numbers in order and then backwards, I do basic multiplication using my fingers to subtract 7 from 100. We get to the end of the test and she asks me to repeat the five words back to her.

 

“Banana, Truck, Green.”

 

I don’t remember the last two and I start to sweat, searching my brain for the final two words. She gives me a minute and I try to search my mind for the missing words.

 

“Desk.”

 

She smiles and is pleased but I still can’t remember the final word. I dig my nails into the palms of my hands. Recall shouldn’t be this hard.

 

She gives me a category clue: “it’s a musical instrument.”

 

“Violin” pops into my head and I tell her the final word. She looks relives. I scored a 29 out of 30, which is excellent. I still feel like I’ve failed. My short-term memory is not what it used to be and it’s aggravating.

 

She decides to send me for an MRI and EEG to see if it could be caused by anything “organic.” I try not to wonder if “organic” is code for “cancer.” She tells me that I should consider taking Ritalin to help my concentration and I laugh. Did I suddenly develop ADD? Like, just out of the blue, I hit my 40’s and now I have ADD? She recommends that I see an OT to give me some tips and techniques to help with any executive functioning challenges. She recommends that I sleep better, and longer, and that I distress. I laugh at the absurdity of both of those recommendations, if I could limit my stress and get more quality sleep, didn’t she think I would have done so already? She told me to stop staying up late at night to watch TV, and I told her that I’m in bed by 10:30 p.m. and I haven’t stayed up late to watch a movie in years.

 

Then she told me I should see a psychologist. That the trauma of last year could be the reason why I’m experiencing cognitive issues, that talking about what happened could help declutter my brain and I would get my short term memory and attention span back. I told her that I see a therapist weekly.

 

Back on the 6th floor, we wait our turn to see Dr. Ashkenazi. My number is called and I go into the lab where the technician draws my blood swiftly and painlessly. He tells me to put pressure for five minutes then offers tape. He then tells me tape won’t help and I’ll bruise without the pressure. I decline the tape and put pressure on the hole in my arm. Rejoining Gaby in the waiting room, I see the nurse walk past the double doors again.

 

“Have you remembered her name yet?” I ask.

 

She was gone by the time he looked up and now I’m starting to wonder if my mind is playing tricks on me. Perhaps she’s a figment of my imagination. We sit together and wait our turn, while all around us people are really numbers as they wait for their appointments with the ward’s hematologists.

 

My number is called an hour later and we make our way past the packed treatment room towards his office. The door is slightly open but I knock any way, always waiting for his permission before entering. I smile with relief when I see him, feeling calm and safe for the first time in months. Dr. Ashkenazi reads the summary from the neurologist and agrees that an MRI and EEG make sense and Gaby makes a note to schedule both appointments for me in the upcoming days. I hop onto the exam table and he begins the examination: I follow his finger and look up; I close my eyes tightly and show him my palms. He feels for swollen lymph nodes in my neck and shoulders and under my armpits. He listens to me breathing with a stethoscope and has me lie down, where he feels around my stomach to measure the size of my spleen and liver. The examination ends and I take my place in the chair in front of his desk. He washes his hands at the sink and reviews my blood test results, which are all normal.

 

I ask for a print out of my test results and we start discussing Chemo brain and the spinal tap chemo and two rounds of high-dose Methotrexate that were all part of my cancer treatment. He wants to wait for the new test results before we move forward with a diagnosis for my cognitive challenges. I feel calm and confident with this course of action and thank him for his time. He reminds Gaby to let the MRI technicians know to alert him once my test is done, so he makes sure he follows up on the results. I want to hug him in appreciation.

 

Knowing that I’m in the best hands possible, we pack up our stuff and head out into the hall. I try not to think about the MRI and the EEG, choosing to focus on the positive: my blood test results are good and I don’t have any symptoms. I’ve been looking forward to May 30, 2019 for an entire year; the statistic of making it through the first year cancer free have been a big weight on my shoulders. Making it through another four years cancer free is another milestone I’m so desperate to make.

 

As we round the corner and head back towards the treatment room, I turn around and grab Gaby’s hand.

 

“Nechama,” I said with relief. “Her name is Nechama.”

 

 

 

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