It was the day after his cancer surgery.
I had set my alarm a few times during the night to check on his pain, give him medication, and empty the fluid in his drainage bags. At the end of the surgery, one drain had been left in his chest and one in his armpit to capture the fluid that would accumulate during the early part of healing.
It had been a long night, and I was making a cup of tea in the kitchen. Fortunately, he was doing well. Not a big fan of pain medicine, he had refused anything stronger than Tylenol during the night. This morning, his face was becoming tense and drawn. Undoubtedly, his pain level was increasing. I left him in the bedroom with his brow starting to furrow. Hopefully, he was wrestling with the idea of taking a stronger pain pill.
It was still hard to fathom that my husband had a mastectomy, a surgery to remove breast cancer. My brain connected mastectomy with a woman’s identity, which left me struggling to figure out how my husband fit into this picture. Why had he gotten this rare cancer? Were my girls at risk because they inherited a gene variant predisposing to cancer? No one in his family even had breast cancer.
I was also ashamed for feeling embarrassed that he had a mastectomy. Even though I knew that breast cancer could happen in men, I had bought into the gendered stereotype that a mastectomy was something that only happened to women. The pink ribbons signifying support for breast cancer didn’t help.
Most people had never heard of a case of male breast cancer. No one talked about it, including most primary care doctors. They were worrying about common diseases in older men like heart disease, prostate cancer, and diabetes. All too often, men were diagnosed when their cancer was already at an advanced stage.
My 9-year-old daughter walked into the kitchen and disrupted my train of thought. The corners of her mouth were inching upwards, and her eyes were sparkling.
“Has Dad even taken any pain medicine since he came home? I feel like he is doing a ton better than you were after your m-o-u-th surgery,” she said drawing out the last words and savoring them with delight. “You complained non-stop, and cried every hour to have someone bring you pudding,” she said with an amused half-smile.
The topic of my gum graft surgery was one that she enjoyed immensely. It had been 6 months since my surgery, and I could remember it like yesterday. To make a long story short, there was an intense, searing pain on the roof of my mouth that didn’t abate for at least a week. The oral surgeon had described this pain as a ‘pizza burn’ during the pre-op visit. It was NOT a pizza burn. The pain of a gum graft and that of a pizza burn are in entirely different stratospheres.
“Look, we are not comparing surgeries,” I said. “Dad is doing well. Let’s leave it at that and be grateful.”
“Remember that grandma had to move in on day two after your surgery because you needed help during the daytime when everyone was gone?” she continued with a playful tone, ignoring my request to let it rest. “Tell me this. Has Dad even complained once?”
A sensation of heat came into my face. That little rascal.
“Ummm, no. He hasn’t. But we are not going into this right now,” I retorted. “We are happy Dad is doing well. Please, go check on him. You know that he can’t move his arm. He might need something.”
She was already skipping down the hall toward the master bedroom and may not have heard my request. Either she was going to check on him or join a video call with a friend.
Video calls had become a staple in our household during the COVID-19 pandemic. Both she and her older sister were attending school remotely while the school figured out how to bring kids back safely during the COVID-19 pandemic. They were talking about bringing her third-grade class back into the school soon.
Juggling the grief, caregiving, my own work, the pandemic, child- and dog care was not going well. I was dropping balls, left and right. There were flat out too many balls for one person to juggle and the grief was weighing me down. I felt slow and heavy.
I sat down with my cup of tea and tried to focus on a feeling of gratitude that his surgery had happened at all. His mastectomy was initially canceled when a CT scan showed a worrisome spot on his ribs. Breast cancer likes to spread to the bones and if this spot were indeed cancerous, he would have been labeled as having an incurable, Stage 4 cancer. The goal of his treatment would change from an aggressive attempt to extension of life to one of extending his life as long as possible.
A PET scan determined that the spot on his ribs looked ‘cold’, suggesting that this area might not be cancer after all. The surgery was rescheduled with the assumption that the rib spot was nothing to be concerned about. They presumed it might be an old injury. But I was still concerned and wanted more answers.
Do you remember breaking a rib? I had asked him one evening while he was reading a book in the living room. He played a lot of sports, so a broken rib could make sense. If he had broken a rib, I would have felt much better and could stop worrying about this spot.
No idea, he responded and continued to read his book without even a glance in my direction.
How is it possible to not know if you have broken a rib? I asked, utterly confused by his amnesia. Breaking a rib was something that one should remember.
I don’t know, he responded, but this time looked up briefly from his book before looking down to read again.
He was sitting in the armchair enjoying himself, and I was worrying about his rib spot. Maybe I should sit down in an armchair and also pick up a book? I doubt that I would have looked as stress-free and peaceful, as he did.
It was a good thing that my husband and daughters were less focused than I on his cancer. My husband had always been a cool, calm, and collected kind of guy. Now – in the storm – he was also very calm. Our young daughters were likewise uninterested in his cancer, but they lacked the life experience to understand what ‘cancer’ might mean. How could they possibly understand? They were too young. Honestly, it was enough that one of us was grieving the future.
Skipping steps came down the hallway and I looked up to see my youngest entering the kitchen with an even bigger smile on her face.
“Mooooomm,” she began in a sing-song voice. “Dad is being a much better patient than you were. He is sleeping right now. If this were you – you would have been cryyyyy-ing for another pudding by now.”
*********************************************
If you would like to read other posts, here are a few:
How It Began. This story is the origins of my Substack and tells of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began
Canary in a Coalmine. The cluster of cancer cases — including male breast cancer — at Camp Lejeune in North Carolina and the link to contaminated water. https://www.afterhesaidcancer.com/p/canary-in-a-coalmine
That Ribbon. The gendered stereotype of breast cancer and my emotional response as a wife of a man with male breast cancer. https://www.afterhesaidcancer.com/p/that-ribbon
The Day He Nearly Died. The story of my husband’s near death in the middle of chemotherapy from a blood clot. https://www.afterhesaidcancer.com/p/the-day-he-nearly-died
**********************************************
Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:
Hearting this post, so that others are encouraged to read it
Leaving a comment (I do my best to respond to each of them), which increases engagement and visibility of my posts
Sharing this post by email or on social media
Taking out a free or paid subscription to this Substack
Leaving me a tip by buying me a coffee.
************************************************
Delightful as always, Kristina. I particularly enjoy that you show caregiving with depth. It's not just the worrying and pushing meds of the patient. It also requires that you keep all your other balls in the air as well.
Just sharing the simple conversations and your thoughts during this time is beneficial to so many people that have/are or are going to be in this scenario. Thank you 🙏🏻