The 12 O'clock Appointment

On Monday, May 6th, 2024. Brian and I were in the waiting room at Clearview Cancer Institute. We arrived at 11:00 that morning so I could get my labs drawn. I would see the Oncologist at noon for my 12:00 appointment to get the results of the bone marrow biopsy I had April 25th.
Earlier that year, in February, I had a routine wellness check at my family doctor’s office and when my bloodwork came back, my platelets were 85. A normal platelet count ranges from between 150 and 400. A low platelet count is less than 150 and a high platelet count is more than 450.
The year before, there were no issues with my blood, so whatever this was that dropped my platelets, had shown itself sometime that year.

My doctor called and recommended I go to CCI for further bloodwork. I was happy to comply because my husband has been a patient there since 2020 when we learned he had Multiple Myeloma. He is living in remission now after 25 chemo treatments and an autologous stem cell transplant. We continue to go regularly for bloodwork for him, so we know CCI well.

My initial appointment shocked the staff and the Oncologist to see me in the patient’s seat and not Brian. The Oncologist ordered some tests that included a bone marrow biopsy and we were there on that Monday to talk to him about results. By now, my platelets were around 55.

Thanks to the creation of the patient portal, we learned the diagnosis on Sunday, the day before. We had settled in for naps after church and lunch. Brian was taking his nap and I just woke up from mine. We checked the patient portal daily for results, so I thought I would look again to see if they posted anything. So far, nothing was posted. I decided to look again, so I opened the portal and the small space that had up to now had no text in it, was filled with so much medical jargon that I had to scroll down to read it all. The text said the bone marrow results showed CMML-1. It went on to define it. Chronic Myelomonocytic Leukemia.

Lord? Am I reading this right? Leukemia! I stared at the word. “Brian!” I said. He woke up. “My results are posted.” He sat up. “It looks like I have Leukemia!” He got up. He came over and we read a long story that was both over our head and hard to read emotionally. We immediately prayed for God to guide us. This looked awfully frightening. After our prayer, Brian instantly went into information gathering mode. He needed to know more. Information is his north star. He spent the rest of the night looking up everything he could on CMML. I spent the night in prayer.

Brian was not new to gathering information from cancer sites. When we learned of his cancer, we researched everything we could. Brian arranged a binder with information and had everything organized with tabs and sheet protectors. I read articles, watched YouTube videos on Multiple Myeloma and tried on my own to understand his type of cancer so we could navigate this new world with greater understanding.

Now, I was the one in the patient’s seat, instead of the family seat, where I sat during Brian’s appointments. Now, our individual research began once again on my type of cancer. We share what we learn with each other. Brian already knows CMML well and I am grateful for his research skills.

So, it was May 6th and we were in the CCI waiting room. It was ten minutes till twelve. The nurse opened the door and called my name. In a minute, we were in the same procedure room that Brian and I knew so well. I sat in the patient seat, and Brian sat in the family seat. How very odd.

There is a whiteboard in the room filled with notes that patients wrote to encourage other patients. I noticed the one we wrote over two years ago. It says, “If you are on this journey, you want this doctor with you”. We know this room well and we know this doctor and his assistant very well. They have become like friends.

The door opened. The Oncologist and his assistant walked in. He had papers in his hands with my name on them. He began to tell us the name of this Leukemia and he said the letters “CM”, and Brian and I finished his statement with him. “ML”, we said. “So, you have looked this up”? he asked. “Yes. We read the report and have researched it already”. He explained the plan forward. It entailed chemo treatments for five days, then off for three weeks, then repeat. He then said he was sending us to UAB, in Birmingham because of a doctor there who knows CMML and will be able to help me. He then said I needed a stem cell transplant, but unlike Brian’s, I needed a donor to give me their stem cells. He went on to explain what that would look like.

I said, “You look worried”. He said, “I am, because I care about you”. He did care about us. He has shown us the best care we could have asked for over the years, and at some point, our patient – doctor relationship became more of a patient – doctor friendship. We now have a “How are your parents doing”? “How was vacation”? relationship. That just happens when you see someone so often.

And the assistant, we have said, is like our adopted daughter. We have watched her go from beginning to work with this doctor, to being able to read him and have the information he needs before he asks for it.

When that office visit was finished, we went to scheduling to set up dates for my chemo. In a few days, I would be the one sitting in the vanilla-colored recliner receiving chemo and Brian would sit in the family chair. For 25 of these visits, three years before, I sat in the family chair and Brian sat in the vanilla recliner. Again, how very odd.

As we walked out to the car with this new knowledge and my chemo schedule, I looked down at my watch and noticed the time. When we entered the building at 11:00, we were only mildly informed about the road ahead. After my 12:00 appointment, we were far more educated and had a plan of attack with a team of people we knew and trusted to walk with us through the maze of treatments.

We got to the car, said a long prayer and thanked God for CCI, for our doctor, for our knowledge, for each other, for the technology that was available for us for treatment and for the road ahead that He already knew.
After the Amen, we knew we had a job to do, so like we did when Brian got his diagnosis, we held each other’s hand, put our minds into battle mode and trusted God to show us the next step. He had shown us things we could never have imagined once before. What would He have for us now? I look forward to telling the story.