My mom has cancer.
Not just ANY kind of cancer, but sarcoma. Sarcoma is one of the rarest of all cancers, occurring in approximately 1 percent of all newly-diagnosed cancers each year. The most common form of sarcoma is osteosarcoma, which often is found in our long bones of our bodies, i.e. femur. My mom couldn’t have come up with a “common” form of sarcoma. Oh no. She had to develop an ultra-rare form. She was bestowed with the dubious distinction of having “MFHNOS” – malignant fibrous histiocytoma, not otherwise specified. Bottom line? It was really fucking rare. So rare that no real reliable, scientifically-based treatments existed for it. Sure, there were clinical trials, but still…we were faced with more questions than answers.
As my mother’s surgeon suggested, my mother sought treatment at the University of Michigan Comprehensive Cancer Center in Ann Arbor, MI. After a call was placed, she was referred to an oncologist to start the ball rolling. This oncologist would review her scans and biopsy results and come up with a plan of attack.
We were still numb.
My mom immediately displayed the bravado of Conan the Barbarian. She was stoic, matter-of-fact and quiet. I, on the other hand, dove into this cancer with both feet. I’m not sure if it was the soon-to-be nursing student in me, the daughter or just the person on the sidelines that decided to take on this role. My mom didn’t say no to my help. She seemed to welcome the thought of someone else listening, asking questions, helping her come up with the best options. I vowed I would remain by her side.
Within days we found ourselves in a treatment room in the clinic of the Comprehensive Cancer Center, talking with the oncologist.
One thing I immediately discovered about oncologists is they deal in a reality that most other physician specialties never encounter.
There’s a very good chance their patients WILL die.
The oncologist was very matter-of-fact, outlined the treatment options and specifically told my mom that it was her decision and her decision alone. He wouldn’t sway her in any direction.
She had a decision to make.
She ultimately went with chemotherapy. Her regimen included doxorubicin, ifosfamide and mesna. The treatment meant she had to endure chemotherapy at the infusion clinic for 8 hours one day every two weeks.
It was hell. The mouth sores, the nausea, the lack of appetite. All the things you hear about cancer treatment.
And the hair loss.
If there’s one thing I know about my mom, it’s that her hair is her crowning glory. She will freely admit to her hair vanity. She will also tell you that losing it was by far the hardest thing she had to endure with cancer treatment. Not the chemo, not the radiation that ultimately followed, but the hair loss. It completely devastated her. For those who think this is shallow, fuck off. We all hold something dear to our hearts when faced with adversity. For some it’s hair.
I have so many memories of my mom during this time. Some are funny. Some are poignant. Some are just plain heart-wrenching.
I remember one night in particular.
I worked evening shift at a local hospital, and I can recall having this nagging feeling that I just NEEDED to see my mom that night. She lived only five minutes away on my way home from work, so why not? I called her.
“Mom. I’m coming over after work.”
While normally this would cause mom to question my motive, I could hear the exhaustion in her voice.
“Ok. I’ll leave the door open.”
11:15 P.M. couldn’t come fast enough. I found myself watching the clock and growing more anxious with each passing hour. Finally it was time to clock out and get the fuck out of there.
I got in my car and drove the few miles to my mom’s place.
I walked in, tiptoed to her bedroom and peered in the doorway. There she was. My mom. The woman who had at times single-handedly raised me from infancy. The woman with whom I shared more than DNA. This woman was MY strength. MY hope. MY confidante. MY rock. The tables had cruelly been turned with this shitty diagnosis. I now found myself in the unenviable position of being all of those things to her.
My mom laid there in her bed with her back to me.
Her bald head shone in the moonlight.
I took off my shoes, my coat, and I slid into bed beside her. She was so cold. She was shivering. I spooned her from behind, using my body to warm her. I held her tight and felt hot tears sting my face as they slid on to the cold pillow. I reached up to caress her soft, cold bald head. She was crying.
This could not possibly be happening.
Fuck you, cancer. You can’t have her. Not tonight.
We didn’t say a single word. We laid there for hours, me warming her with my body, slowly feeling her relax and listening to her breathing become more rhythmic as she drifted off into sleep. Only when I was confident that she was asleep, did I slowly pull myself out of her bed and quietly exit.
It’s still difficult to recount that night without shedding a tear. Or two. Or needing to take a break from writing this to go get a tissue.
Anyway, her treatment continued and after two more rounds of the current regimen, a CT scan was ordered to measure the size of the tumor to see if it was responding to treatment.
The tumor was getting bigger.
Bigger? What the fuck was this all about? We thought chemotherapy was supposed to SHRINK tumors. Apparently, the tumor didn’t get the memo. Our worst nightmare had become reality. The tumor was now definitely too large to remove safely and with clean margins. The surgeon delivered the worst possible news:
“Juli, the tumor is not responding to treatment. I am unable to proceed with surgery to remove it. You will have to follow up with your oncologist to see what other options may be available. The most I can do is debulk the tumor, but that will not remove it, and ultimately, will not contain it.”
My mom seemed confused.
She never quite understood what that meant. She didn’t understand that debulking was really a futile attempt to buy her more time. She firmly believed that the surgeon could just easily go in, remove the tumor, give her clean margins and somehow fuse together the great vessels that were involved.
Let me back up.
My mom’s tumor was on the right side of her neck and had decided to wrap itself around her great vessels, thus ensuring that any treatment would rely on chemotherapy shrinking the tumor significantly so as to pull the tumor from these vital areas. The tumor really picked a shitty spot to take up residence.
I immediately jumped in at this point. I added, “We plan on following up with the oncologist to investigate other treatment regimens, clinical trials and discuss how soon we can begin.”
What I didn’t have the heart to tell my mom was that we were indeed at a crossroads.
It was time to face the music.
Her mortality stared us in the face that day.
We stared back.
(to be continued….)