On Thursday, March 28, we trodded on back to the Beloit Clinic, which is more or less next door to the Beloit Memorial Hospital. The route is becoming so familiar to us now that neither of us needs the help of the NAV systems in our cars to get there. Lately, more often than not, my wife has been driving and I'm grateful to her for that. The more fatigued and sore I become from the growing cancer, the less I feel like doing almost anything, including driving a car.
This appointment was a biggie, though. Here, we would be told how far the cancer has spread to other parts of my body, and I was pretty sure that it had. It was the only thing that could really explain the soreness in my back and hips.
I should pause here to explain that we both feel like my doctor knows his stuff. He is a urologic oncologist. When we've talked with him in the past, he seems knowledgeable in the latest research in the field. He's already talked with us about procedures that are far less invasive and destructive than what they were doing just a couple decades ago. However, his "bedside manner" leaves a bit to be desired. He's often so busy explaining the details of techniques to us that he gets a bit lost in it, never really stopping to either throw in an encouraging word or see how we're feeling and whether or not he should continue.
It was a combination of this and a problem that I've had for as long as I can remember that turned what should have been a fairly simple follow-up into a day long nightmare for us.
Apparently, he had not seen the PET-PSMA scans before we had gotten there. (To his credit, though, we think he was over-booking himself just to get us in the day after the scan.) So, after the usual waiting in the lobby and waiting in an exam room, he invited us into his office to look at the scans with him and discuss the situation. I worry about situations like that because I have always had what is called a strong vasovagal response. This means that, whenever I'm paying too much attention to a medical procedure that makes me nervous, my blood pressure tanks, I get lightheaded, cold sweats, and often pass out. This has happened to me while having blood drawn, while seeing images of anything medically invasive, and even just discussing medically invasive things. It's a curse, but I can often avoid the worst case scenario of it all by, for example, asking to lie down to have blood drawn.
Here we are in the doctor's office, with only upright chairs, looking at detailed scans of my body, and discussing all the places in my body that he's seeing signs of cancer. It's in my prostate, my hips, my spine, a few places on my ribs, and so on. Even though I felt like I had prepared myself for bad news like this, it was still freaking me out. At one point the doctor mentioned, "Stage 4". Again, this was all very matter-of fact to the doctor, and there was no interjections of encouragement or good news whatsoever.
As much as I was trying to hold it together, I started getting light headed. I asked if there was somewhere I could lie down. He took us across the hall to an exam room where various nurses and physicians assistants started tending to me. If it was just cold compresses and encouragement, I would have probably been fine in a few minutes. Instead, it was as though everyone around me was panicking, taking my BP, trying to put pads on me for an EKG, and so on. Very few people I've come across (even in the medical profession) seem to be familiar with a vasovagal response, and I truly believe they all thought I was having a heart attack. I wasn't, and I knew that, but the more everyone panicked around me the more freaked out I got.
I never did pass out, but I was breathing heavily and moving my fingers and toes around because this helps prevent the BP drop that makes me pass out. I can definitely see how my actions caused even more panic in them. I remember people lightly slapping my face and saying things like, "stay with me". I was with them, just trying not to pass out. Someone said my BP was something like 70/40. Really low. I heard someone just outside the door telling someone else to call the paramedics. Although I knew what was happening to me and knew this was unnecessary, I was also powerless to stop them.
Eventually the paramedics came, transferred me to a stretcher, and wheeled me out of the office, down the hall, down the elevator, and out to the EMS vehicle. They would be taking me to the ER of the hospital which, as I mentioned, is right next door to (across a road from) the clinic. The entire time, the paramedics talked to me about what was going on, but didn't seem to put much stock in my whole vasovagal explanation. To all of them, it seemed, I was having a heart event of some sort.
Our original appointment was for 2:15 pm. We probably got brought back around 2:30 or so. After waiting in an exam room, the doctor called us in to his office around 2:45, and I started to get light headed at everything that was going wrong with me around 3:00 or a little after. I completely lost track of time after that, but I bet I was over in a room in the ER, an IV in my arm and EKG sticker pads all over me by 3:30-3:45. I'm setting up this timeline because I did not get out of the ER until 8:00 pm. There were tests and scans and blood drawn during that time, and a low potassium count prompted them to start an IV drip of more potassium, but I spent a ton of time in the ER feeling back to normal and just waiting.
For a while, my wife was with me, and her presence was (as always) very calming. When they came in to talk to me about the potassium drip, though, they said it was going to be at least two more hours. I sent my wife home to shower, eat, etc. This was probably around 5:30. She came back for me around 7:45 and I didn't actually meet her out in the lobby until around 8:00 pm.
What a day! Not at all what we had planned.
I can't blame my doctor's staff or anyone else involved for taking every precaution, but I do wish they would have all listened more seriously to what I was telling them about the vasovagal response. I've lived with this thing my whole life, I knew that's what this was, and it was the panic of everyone around me that made the response worse. If any of them would have taken what I was telling them more seriously, I would have normalized in that exam room and been home many hours earlier.
The one thing that all the tests in the ER did reveal, though, was that they think I have a touch of pneumonia. This would explain the coughing and throat clearing that I've been doing since January. I probably got it from vaping. They gave me two different antibiotics to try to knock it out. I hope it works. I'm definitely not vaping any more, and haven't since I suspected it was becoming a problem in January.
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