I itched all over for nearly a year. It was embarrassing in public and a torture in private as I couldn’t sleep or relax or think. I would lay in the tub everyday after work and school because water was the only thing that helped. No lotions, creams, prescriptions, etc. were effective. And I tried them all.
My primary care doctor didn’t know what the cause was and neither did the allergist or dermatologist to which I referred myself. (Thank goodness for open-access HMOs.)
I reviewed the blood work from all three providers with the help of Dr. Google. A forum post came up several pages deep into Google search results which indicated similar blood work results for a person who was ultimately diagnosed with Hodgkin’s Lymphoma. I Googled Hodgkin’s Lymphoma and learned itching was a symptom. I emailed my doctor, requesting to be tested. He emailed back that I probably didn’t need to be tested for cancer, but to come into his office anyway.
I showed him a swollen lymph node near my clavicle that I found after Dr. Google told me where to look and why. I told him I still itched. He agreed to a biopsy.
When the biopsy scheduler called, she wanted me to have a fine needle aspiration biopsy, or FNA. This type of biopsy is not a good test to use for Hodgkin’s Lymphoma because the needle is small and the cells that indicate Hodgkin’s are big, per Dr. Google. I asked for an excisional biopsy instead.
The scheduler called my doctor who called me wondering if I really wanted to be cut open. I said yes and explained why. He approved the more invasive but accurate biopsy.
My surgeon was amazing and had me in and out of the hospital quickly and with minimal scarring. Results came back quickly too.
My doctor called me with them while I was in class. I stepped into the hallway where he told me over the phone that I was right, I had cancer, Hodgkin’s Lymphoma. There was nothing immediate to be done (although a referral for an oncologist for treatment, back to my surgeon for a chemo port and to another surgeon for a bone marrow biopsy were underway), so I went back to class.
My professor gave me a hard time about taking a phone call during class. “What’s so important?” he wanted to know. “Cancer,” I said. The room fell into a stunned silence as everyone in the class heard about my cancer diagnosis before even my closest family. I was calm about it, and the teacher was smooth. He transitioned right back into class material. I took notes.
After class, he shared that his wife was a cancer survivor. He said if I needed anything to ask. He supported me for the rest of the semester.
I wrangled with my insurance company, the hospital, my chemo port surgeon and my bone marrow biopsy surgeon so that the two procedures could be done simultaneously, saving me money on hospital costs and ensuring I’d be out cold for the biopsy since I had to be for the port. This way I wouldn’t feel the painful procedure.
My chemo port doctor ran ahead of schedule. She was frustrated with my bone marrow biopsy doctor. Finally she gave him an ultimatum. He appeared in fancy shoes. I guess he didn’t have time to change. I was taken into surgery well before I was scheduled for it, which was good because I was hungry– fasting sucks!
The bone marrow biopsy was negative. The chemo port was in, but eventually it tilted and also became the site of a blood clot in my neck later which required me to be prescribed rat poison. It remained usable through chemotherapy; that was the important thing.
Chemotherapy treatments were frequent, nauseating, exhausting. Chemo-induced peripheral neuropathy came on hard and fast. The oncologist had never seen it hit a person so early in treatment and so severely. He said he was worried he was crippling me. I told him keep going. I want the full research-based established treatment for my cancer. I don’t want a relapse, I don’t want to do this again. Wheelchair is better than dead.
My hair fell out. A little at a time at first, then more and more. I couldn’t stand the feeling of the loose hairs breezing on my back, neck and chest, my arms, as the hairs fell to the floor. I couldn’t stop rinsing my hair in the shower or drying it on a towel after bathing because more and more would come out.
It wouldn’t stop.
To save my sanity, I shaved my head. Just locked myself in the bathroom one day and did it myself. I’m sure a family member or friend would have helped if I asked, but it felt shameful to lose my hair. And weirdly paranoia-inducing, this skin-crawling feeling of spiders or flies on my skin where the hairs landed and tickled on their way out.
I wore hats.
As chemo progressed, an oncologist I saw while my doctor was away put me on antibiotics, just in case. He gave me a month’s supply of Cipro. I took it for at least two weeks before my oncologist found out and took me off of it. The damage to my tendons was done. And, research shows a link between neuropathy and Cipro, and my neuropathy was ever-worsening.
Later my oncologist put me on Levaquin. It too is an antibiotic with negative effects on tendons and is linked with neuropathy.
I could hardly walk.
I fell a lot, rolled my ankles. I was in pain, weak.
I met with a radiologist who would nuke me if I couldn’t make it through chemo, but somehow I did. No radiation for me.
My hair grew back in fuzzy like a duck. I graduated with a buzz cut and a smile. Although I was sick, tired, weak, in pain, barely able to walk, chemo-brain-fogged, I finished my senior year of my undergraduate degree. I won an award. I made it.
Now, after-effects abound. Copious amounts of gabapentin are the only reason I can walk, although I am still in pain. Stop lights are a challenge, forcing myself through the pain to keep my foot on the brake pedal. It’s hard to type, open bottles, put on earrings. My hands are numb from the neuropathy. But it’s better than my feet which are a strange combination of numb and painful.
My heart and lungs took a hit.
Somehow my eyes got involved too. Maybe it’s Adie’s Tonic Pupil, maybe it’s Horner’s. My eye reacted to both tests, although more strongly to the Adie’s test. Perhaps the one-third of my chest cavity that is scar tissue from Hodgkin’s-affected lymph nodes pressed on something that runs to my eye, which would be Horner’s. Or maybe it’s Adie’s, but what a coincidence.
Reading hurts. And that’s said because I need to do it for work and school. And, I want to do it for pleasure. Reading has always been my solace. Being in bright sunlight hurts, or even bright office lights. It’s a bone of contention with my coworkers who want the overhead lights on a high setting which I cannot stand.
Recently, I started cancer rehab. I am lucky a facility offering this treatment is available in my area. I found out about it because they sponsored a paid Facebook post which appeared in my newsfeed. None of my doctors mentioned this resource or referred me to it. Again, the internet saves the day. First with my diagnosis and now with my recovery from it.
I love cancer rehab. I am falling less, rolling my ankles less, my balanced is improved, I am stronger, I am moving closer toward a healthy weight for my body. It is empowering. I love my trainer who is certified more than as a regular personal trainer, just so she can help me. Her workouts are tailored perfectly for my body. I can do this. I love my fellow cancer survivors. They are strong. Inspiring.
We are a funny crew.
I’m fat. My feet hurt. My balance sucks. She’s thin; her shoulder bothers her; she gets dizzy. Another is perfect, but for her posture which the trainer constantly corrects. That one’s still in treatment, she comes when she feels well enough. When she’s here, she’s incredibly strong. I wonder how she does it. My hair is catching up to this other one’s hair. I am glad.
Soon my school schedule will move me from the entry-level cancer rehab class to the advanced class. I hope I can hack it.
A substitute trainer exclaimed “Oooh! You’re bendy!” The advanced class instructor said I was bendy too. I told her she sounded like her colleague.
I bought dumbbells off of Craigslist. When I picked them up, the seller asked if he saw that right. “Did you really just pick up a 70 pound dumbbell from my garage and take it to your car, parked on the street?” Yes, I did. I wasn’t just going to stand there. These dumbbells aren’t going to load themselves, after all. I’m going to be ready for the advanced class.
I’m going to be ready for life.
I am strong again. Thank God. (Doctors, science and medicine too; don’t get me wrong.)
…
(Although there is a fear in the back of my mind that I don’t talk about, that no one can see behind my smile and 70 pound dumbbells. I worry chemo-brain and gabapentin are taking my intelligence away. Can I still be a good employee? A good student? With memory problems caused by chemotherapy and gabapentin? If I went off of the gabapentin, my memory would improve. But could I withstand the pain? I am a different person now. I fear I will lose my ability to think. That ability means so much to me; it is me. Is it gone? Am I a mere shadow of who I was?)
(What if the cancer comes back?)
Loading comments...