It started out as such a good day. It was a beautiful February Friday in 2021 and my day was filled with fun projects for work. I had an MRI scheduled for the end of the day to finally figure out what the nagging ache in my legs was all about. The doctor who ordered the MRI was pretty sure it was just a case of bursitis and he laid out all the treatment options. I was eager to get it all taken care of.
But it wasn’t bursitis. As I was getting dressed, the MRI tech called me back. The doctor was on the phone. “It looks like you have malignant tumors in your legs. Probably spread from somewhere else in your body”. He never said “cancer”, but I did. “You mean I have metastatic bone cancer?” I said. He told me “yes”. I could feel the terror welling up inside me. I am not a cancer expert but I did know that this was a death sentence. I asked him what else it could be – surely this was not a definitive diagnosis. “In my and the radiologists’ experiences, this is usually what it is. I’m so sorry. We’ll get the best oncologist and find out where the original cancer is and start treatment”. He asked me if I was okay driving home and I said “yes”.
I needed to call Mark to tell him what happened and to meet me at home. His older brother had just died the day before from glioblastoma – an aggressive brain cancer. This was just all too much.
For a while, Mark and I just sat on my couch and held each other, sobbing. My primary care doctor called. “Look, we go on a fact-finding mission now. We don’t exactly what’s going on. I am going to call in labs for you on Monday and we’ll go from there”. These were the words that the first doctor should have said. But the damage had already been done. I was convinced I was dying and my panic didn’t subside. Mark and I cried some more, ordered take out from Chez Fonfon, cried some more and then started planning the future. Would he stay in Birmingham after I died? Should he move to Virginia to be near my family? How long would I live? From that night on, he stayed with me every night. I was never alone. Still, I never fell asleep that first night.
It was a long weekend. I wanted answers that would be a while coming. Fortunately, my friend Kristine and I had made plans to spend Saturday together on my porch – just catching
up. She was just what I needed. She didn’t bombard me with questions I couldn’t answer. She just offered support, let me talk, would interject with comments and stories that had nothing to do with cancer, disease or death. Other friends offered comfort, concern and support as well. My friend Jennifer brought me flowers every week. That night, I fell asleep curled up next to Mark and slept through morning.
The next weeks were filled with lab tests and procedures. Visits to several different specialists. This is where things got weird. All my lab tests – including cell counts – came back normal. They tested for tumor markers – all normal. My CT scan showed no signs of other cancer. The PET scan showed no cancer other than the bone lesions.
And then the results of the bone biopsy came back. The oncology nurse practitioner called me to tell me the news. “You have acute lymphoblastic leukemia. It’s treatable!”. While not exactly happy news, at least I wasn’t dying. But why were all my cell counts normal? That's not typical of leukemia.
I was referred to a wonderful oncologist who was smart, caring, and was wearing a gorgeous A-line dress under her lab coat. When I asked her about where she got the dress, she tells me that her aunts in India make them for her. And then down to business. She tells me she’s ordering a bone marrow biopsy. And just when you think things couldn't get weirder, they do.
Next blog: Mystery Marrow
Beth Kitchin PhD RDN