#3 Oncologist #1 and My Baseball Cap
There’s nothing quite like walking into an oncology office for the first time, knowing absolutely nothing about your diagnosis, your prognosis, your future. Cancer has a way of stopping your entire life in its tracks and opens the door for the darkest thoughts to ruminate in your brain.
It was March 13th, Dave and I sat in the lobby and tried to distract ourselves by making jokes or remembering funny stories about the kids. The giggles came easily, probably from nervousness. But just as easily, tears would stream down my face as I anxiously waited to meet the person who would be in charge of my care going forward. It’s hard not to watch other people in the lobby. I’d look at other couples and wonder which spouse had cancer, and what type of cancer….were they as nervous as me? I felt young and out of place, like I didn’t belong, similar to the feeling you have when you walk into a hole in the wall bar in a small town and everyone turns to look at you, but aren’t exactly welcoming to newcomers. I overthought EVERYTHING before coming to this appt. Before we left the house, I somehow decided that if I wore a baseball cap plus makeup and earrings, I’d look super put together, but tough at the same time. I confessed to Dave, “I know this doesn’t make any sense, but maybe if she sees me looking good in my baseball cap, she’ll be like dang, that’s one tough chick, you have cancer, but it isn’t that bad, you have nothing to worry about!” We both chuckled at why a baseball cap would bring on these feelings. Was it empowerment or disillusionment? I don’t know, just the random thoughts of my brain I guess.
My name was called and Dave and I, and my baseball cap, walked back to the exam room where the nurse sat me down in a chair to do the standard temp check, heart rate, blood pressure. My blood pressure was 155/105. She looks at me with pity and asks, “are you nervous?” I think Dave could see the daggers shooting out of my eyes. Are you serious? Am I nervous? This has to be a joke that a nurse would ask me this at my first oncology appt. Fuck yes, I’m nervous, go screw yourself! Little did I know this was likely an omen for most of my future interactions with the office of Oncologist #1.
Oncologist #1 came in. She was thin set, with short hair and curls streaked with gray. She was hard to read, I couldn’t tell if she was concerned for me or just devoid of any emotion whatsoever. I didn’t have any warm fuzzy feelings about her like I do about my family physician…I think I was realizing I didn’t really like her. She spoke some facts about my diagnosis and addressed what my treatment plan would be. I’d need to do 4-8 cycles of chemotherapy and then do a stem cell transplant, also known as a bone marrow transplant (more on this later.)
She explained my chemo regimen would consist of 4 drugs. 2 of these drugs were oral medications and two of them were injections in my stomach. One chemo cycle would be 28 days, consisting of 3 weeks of treatments, 1 week off. I would also be given a monthly injection of a bone strengthener to bring my calcium levels down (to counter the damage the myeloma cells were doing by eating away at my bones.) I asked her nervously about side effects, one of them being “will my hair fall out?” She replied with no emotion, “No, not in this phase, but it will when you get to the transplant phase.”
She asked if I was getting a myeloma specialist. I had done enough research by this point to know that a myeloma specialist was a requirement. Since myeloma is a rare and complex cancer, there are doctors out there who only deal with myeloma patients and anyone who is diagnosed with this disease needs one of these speciality doctors on their team. Specialists are generally only found in large cities or large cancer centers in the country….there are no myeloma specialists in Ft Myers, or even in greater Southwest Florida. The closest specialists to me are in Tampa, Miami or Jacksonville. The specialist is the doctor who comes up with the overall treatment plan, and relays that information to my local oncologist to implement. The specialist also performs more complicated procedures like transplants and other novel therapies. At this appointment, I knew I needed a specialist, but hadn’t talked with any yet and had no idea where I was going to start. So I thought it would be a good opportunity to seek her opinion on several hospitals with myeloma specialists. She told me one place I was interested in would be super pushy and another place I liked had a crazy doctor and so she no longer refers there. She had no other advice in that regard….geez, thanks.
She wrapped up the meeting by telling me I would start chemo at the end of the following week after my PET scan and medications had been secured and to make a follow up appt with her in two weeks to touch base. She also told me that I’d need clearance from a dentist before starting treatment because one of the drugs I would be given can make any major dental work incredibly difficult to perform. My last question for her was about an upcoming trip we had already planned to Disney World, we were scheduled to leave in just 2 days. We recently purchased a new RV and had plans to take it to Fort Wilderness and camp for 4 nights. We were only going to visit one park during our time there which was an after hours event at Magic Kingdom, and the remaining time would be spent camping in our RV and relaxing at the Fort. She said I could go to Disney World, but I needed to rent an electric scooter for Magic Kingdom and that I absolutely could not go on any rides. “Even It’s a Small World?” I asked quietly. “No, nothing, you cannot risk breaking your hip because we would have to pause your treatments and it would be a huge setback.” Okay, the message was starting to sink in, my life would be looking different from this point forward.
I left the office with more questions than answers. Why hadn’t she staged me? How bad is it? Do I have anything good going for me? Would I be making a mistake by reaching out to any of these specialists I was considering? Did she even notice my baseball cap? Hello? It’s from the Homestead-Miami Speedway, you know NASCAR? I literally got nothing from her. Maybe I shouldn’t have worn the baseball cap after all….what do you think? (Picture of the hat I wore that day below 🤣.)
Ugggh, still so many questions, but I was grateful to be starting treatment to stall the progression of this cancer.
