I left on Sunday wearing a tank top and shorts with the air conditioner on in my car since it was 80+ degrees. I decided weeks ago that I wasn’t going to tell anyone when my appointment was and that I would go alone. I wanted the opportunity to digest whatever was unveiled before anyone else knew or expected an update from me. I wanted my own time to process. By the time I reached Rochester 2 hours and 40 minutes later (not a PR but probably top 3), the temperature had dropped 14 degrees. It made for an invigorating stop at the gas station. The next morning the temperature at 5 am was 42 degrees and dropping with a wind chill factor of 32 degrees and 25-30 mph sustained winds. I was going to hoof it the 8 or so blocks down to the Charlton Building but I decided to take the shuttle. Besides it was still dark and I’m afraid of the dark.
My view from the hotel room Sunday night.
I was the only one walking around in the Charlton at 5:30 am looking for Desk One until I surprised a gaggle of electricians loudly debating something obviously very important by the elevators and stunned them into silence. I wandered into Desk One’s empty waiting room and read the sign that says they open at 5:45 and to ring the bell for a technician. It was 5:35. So I rang the bell. I grabbed a sign in sheet, filled it out and sat down. At promptly 5:45, a guy in scrubs and a lab coat wandered out and asked if there was anyone named Sarah Russell here. I looked around at the large, empty room and looked back at him. I guess that’s me.
Joe was a friendly guy, one of two that do this, and quite skilled and efficient at his job. Blood glucose check first, IV second. He had no problem sticking me and I barely had time to wince. He took me to the machine that administers the exact dose, sat me down and hooked me to it. You can see the percentage of the FDG (radioactive glucose) being administered on a graph until it’s done and all of it has transferred into me. He unhooked me and I returned to my industrial, extra wide recliner. I know the drill. It’s dark and you’re quiet for 45-50 minutes. He covered me up with a warm blanket and pulled the thick curtain. It blocked much of the light but I could still hear everything. I was the first patient of 60 today or Number 1 as I kept referring to myself. Sometimes they get up to 80. They run a tight ship.
I could hear the woman next to me who’s in her 70s explaining that she is to have surgery tomorrow and is currently undergoing dialysis. She got sick while waiting for her radioactive tracer to reach the far corners of her insides but the tech explained that it probably wasn’t the cause of the nausea. There was a cheerful 70 something man that had to be told to put his solitaire game away. No stimulation! Then there was a younger voice. I listened carefully for him to repeat his birthday as we all have to do. He’s 24 and had driven down from St. Paul that morning. I assume most people come in for PET scans for only one reason.
After I had given the tracer ample time to marinade inside me and the cancer enough time to greedily eat it up, we walked to the machine that would scan my innards and provide a glimpse of what was going on in there. I took off my belt and emptied my pockets. I laid down and put my hands above my head. I stayed in that position for about 20 minutes as they slowly slid me through and took pictures. Then I got up, gathered my stuff and scrammed. It was 7:15. I had hours to wait for my afternoon appointments with my medical oncologists and orthopedic surgical oncologists.
I returned to the Gonda Building a good hour early for my first afternoon appointment because I had to check out of the hotel. I always eyeball the people I encounter and try to diagnose their maladies. Some people look normal. Some look quite ill in a variety of ways. I made my way to my old stomping grounds on the 10th floor and got comfortable near the windows. The waiting room was full, bustling. It’s an interesting cross section of the human race. The big guy in the leather coat with a full head of flowing, curly white hair and a sucker in his mouth. The parents there with their children. The adult children there with their parents. A few being pushed in wheelchairs. A few with hats or wigs. A few proudly f-you bald. A few that are obviously new here and quite uncomfortable. A construction worker that had come straight from work, still wearing his dusty clothes and a terrified expression. We all have a common denominator. The ethnic diversity is also more interesting than you’d normally find in rural Minnesota. Some look like they drove in from the farm down the road, others like they flew in from the other side of the earth.
I sit. I wait. I study. I stand, walk and try to unhinge my stiff hip. I watch the window washers on the building across the street. I understand that a critical part of my immediate future is about to be revealed. But I don’t think about it. I know I can’t change what the scan shows, at least not in this moment. I have a list of questions to talk about with both sets of doctors. I am not nervous or anxious. I am quite calm and have been for a week or so. Once my dad was through surgery and safely home, I turned a bit of my attention back to myself. I know the chances of the drug I’m on working indefinitely is about the same as winning the lottery. I know that current conventional therapies do not hold a cure for me. I’ve been exploring a Plan B and I’ve started to bring it into focus in the last few weeks. More to come regarding that. In the meantime, I’m peaceful.
We get right to the point with my first appointment and pull up the PET scan. “It looks good.” I got off the couch next to the desk and crouched next to the doctor so I could have a clear view. My initial glance saw nothing lighting up that shouldn’t. We pulled up the written report to see if the radiologist agreed.
Continued positive response to treatment. No obvious new metastatic disease. The numerous sclerotic lesions throughout the skeleton demonstrate no significant FDG uptake.
I decided to spruce up the scan because I’m fancy like that.
I was not surprised and again, not relieved. I just felt the same. This is excellent news and the best report I could get but I think my intuition was already tuned into it before I saw the results. I still have incurable cancer. That has not changed. We discussed my questions and then got the to fun part, the exam. They like to run their hands and eyes all over me and I’m used to it. I told them that the last time I went to the dentist, I started to unbutton my shirt because for a split second, I forgot which doctor I was visiting. Habit, I guess.
The medical oncologists left and sent in the orthopedic surgical oncologists. The first one reminded me of a Samoan Superman impeccably dressed in an expensive, well-tailored suit. We discussed the basics, the inflammation around my hip and then in came Dr. Sim, the big cheese, and a visiting doctor from Japan. We looked at my PET again and then the Japanese doctor provided a guess at my diagnosis from the initial x-ray taken in July. He got it right. Then he giggled and bowed. They said he always gets it right, even the most puzzling of puzzles. Dr. Sim continues to be pleased with me and the results. I asked him if there was anything I shouldn’t be doing and he told me not to jump out of the back of any pick up trucks. Maybe he knows me better than I think!
Another exam and discussion of the continued pain in my hip. They diagnosed me with troch bursitis and we all agreed to a steroid injection. I’ve been enduring pain in my hip when I engage a certain range of motion but waiting to see if it subsided. It hasn’t and my compensation for it is increasing.
Dr. Sim: Dr. A, do you want to inject Sarah?
Dr. A, aka Dr. Superman: Oh, yes I do.
I got dressed and went up to the 14th floor, got some fast x-rays and then they prepared me for the injection. I laid on my left side and the nurse put one hand on my right shoulder and grabbed my left hand with the other. That’s weird. Is she trying to comfort me or hold me down? I found out when the large gauge needle made it into the bursa which felt like someone sticking a blow torch into a bundle of raw nerves. My leg started to spasm and she tightened her grip. “Holy shit!” I said as I laughed which caused my leg to shake even more. And then it was over. “Well, we’ve never had anyone laugh when we injected them.” The nurse said after 4 hours it would start to hurt. Um, it hurts right now. It was painful enough that I couldn’t hide a limp. I gimped all the way back to the hotel thinking it would work out the pain but it didn’t. Even today, it’s sore and I’m still limping. I’m not sure what to expect but fingers crossed it improves. It will get a true test drive when I push the mower later today.
I was in bed 45 minutes after arriving home last night. I was cooked. For the next 6 months, I’ll focus on being healthy and happy and taking care of my parents. Next up, Mom’s appointment with the orthopedic surgeon this afternoon. Never a dull moment!
Driving home. Not a PR. Too much road construction.
Their high-tech pain scale. I guess number 10’s helmet is too tight. Also, I think I’m funny.
A few of the people that heard Troy was making ribs on Saturday.
Out with my O-Town ladies on Friday.
Thanks for reading. Thanks for caring. Thanks for laughing with me and at times, at me. My gratitude continues.