The second entry in Keith Reimert’s blog series in regard to his experiences and thoughts as he battles prostate cancer. see the first entry here or go to the Index page to see the entire series.
Not The Results We Hoped For
Dr. Sulek pretty much summed up how we all felt right now.
“Well, these weren’t the results we hoped for.”
No shit, fella. But if there were any easier way to sum up how my wife and I were feeling, I don’t know what it would be.
“But,” he continued, “I don’t want you to worry about it. It’s my job. Let me worry about it.”
The word “cancer” is certainly a scary, awful word. No one wants to hear it unless they are saying you don’t have it. Still, when he said this I relaxed a little, but my wife and I still continued to share some concerned glances.
“Like we said before, prostate cancer is usually a very slow-growing cancer. It could be years until we have to do something, if we ever need to do anything at all. More often than not, prostate cancer is something you die with, not something you die from.”
That was kind of comforting, as far as discussing my own death goes, however I knew there would be a “but.”
“But…”
Bingo!
“…you are a little on the young side to have prostate cancer. If you were someone in your 70’s, we might not worry about it at all.”
That was when he brought out the graphs and delved into medical speak that I am really not fond of. My wife, who is plenty smarter than me and happens to work in a Lab, can always dumb things down for me later. He put some colorful charts with shiny things in front of me that entertained my inner child, who gleefully clapped inside my head. I tried to get it, but I had my normal struggles. But I knew Vicki would help me later.
He discussed something called a “Gleason scale.” These were numbers in an equation that gave an idea of the aggressiveness of my cancer. Currently most things were a “3+3” so a 6 on the Gleeson scale. That was a good thing. One or two were a 3+4, so a 7. 7’s were bad and meant treatment could be coming soon. But, he explained, not as bad as a 4+3. For now, I really just focused on the “6” or “7”, not so much how we arrived at that number.
“Right now, though, I don’t think we need to do anything,” he said, “I don’t think your cancer currently requires treatment. We’ll just continue to monitor.”
Every time I hear that word “treatment”, all I see is a surgical room in my near future. I’ve never looked into prostate treatments. The only two I knew of were cutting it out and something called “seeds.” And I had no idea what the hell they were, other than how we started our garden.
He went on to explain that monitoring meant more blood tests for PSA levels, fingers in my ass and an MRI. The MRI was necessary so they could get a picture of exactly how big the cancer was and where it sat in my prostate. It was also something very new for me. Sure, I’d heard the term, but in my 55 years I had never had to endure one. Add it to the list of things of which I had no idea what to expect.
Upon leaving the office I called my parents and my brother to give them the news. They had been kept up to date about the issues and shared every concern and question we had. I gave them all the answers I could and took solace in the fact that my cancer wasn’t life or death. I thanked God that the news I was giving them was not a message of how long I had to live. Which was about 15 years or so if I did nothing at all.
Of course they shared their support and love and offered anything that I might need along the way. Having the love and support of family and friends is pivotal to enduring any health crisis, so I felt very blessed for the people in my life.
Next, I told the kids. But since my news was dire, but not life or death, and it is the technological age, I informed them by text. I figured it was just easier. However, I don’t think the message sank in completely for them since I told them we would not do anything immediately. But they seemed to misunderstand that message to say that I did not have cancer. That is something I would end up dealing with later.
It took a little time for my urologist to get the MRI set up and it didn’t get scheduled for another five months. Months spent receiving the additional bills I had been warned about at the biopsy. $300 for this fee, $250 for lab work and $400 for the freaking anesthetist. Of course, that guy deserved a million, as far as I was concerned. I grumpily paid these as I received them and let the doctor worry about the cancer. After all, it’s why he gets the big bucks.
Those five months passed quickly and on a normal, oppressively hot August day in Tennessee, I’m sitting in a parking lot sweating into the drivers of my Chevy Captiva near St. Thomas Hospital wondering if I had the right place. The directions they gave me sucked an asshole and I was depending on my Waze to guide me, but at this point I felt mislead. In fact, I was. I ended up parking in the wrong place and praying I wouldn’t get a ticket. Then I basically stomped several blocks until I found the right place, muttering curses under my breath like a crazy, homeless person.
I was already pissed and nothing about that was going to change any time soon. I took the elevator up to the MRI center and talked to the lady at the desk who, much to my surprise, asked my name, my birthday and my reason for being there. These people all sound like robots. Anyway, after taking my $750, she gave me several sheets of paperwork to fill out while I waited and sent me off to a chair.
Now one thing about this experience is that I told them on the phone call the previous week that I am claustrophobic. I mean, I can’t do tight spaces. Even elevators full of people I sometimes need to take a deep breath and stare at the ceiling. Whoever I talked to on the phone, who sounded like a fairly young woman, ensured me it wouldn’t be a problem. That the space I was going into was “fairly big” and I wouldn’t be going all the way in. Lies! All lies!
They call me back and lead me to a changing room with free lockers to store all your clothes and valuables except my underwear. I got to keep those this time. So I change into the lovely hospital gown and try to tie it. Why the fuck do those things only tie in the back? How the hell are you supposed to tie them when you are alone? I’m not an owl, I can’t turn my head the whole way around and look. I did the best I could, which wasn’t good, but it would have to do. Whoever got see my blue boxer briefs…you’re welcome.
I sat on a bench in the locker area and waited. They were supposed to call me in in a few minutes. I could hear voices and a machine echoing down the white, tiled hallway. A friend of mine told me one thing about the MRI and that is that MRI’s are loud. I had no idea. It sounded like a large clothes dryer with 100 pairs of workboots in it tumbling around and around. Well, this was going to be great!
Another guy walked in while I sat there. He had obviously just finished and he looked very unhappy. His red face hung in a dour frown and he kind of grabbed at his clothes angrily. I felt like I was looking in a mirror.
The tech walked in and asked if I was Mr. Reimert (which he savagely mispronounced) and then, get this, asked me my name, my birthday and the reason for my visit. It was starting feel like I was a prisoner of war giving my name, rank and serial number.
Now he ushered me into the room. If you have never had an MRI before, lucky you. If you are not claustrophobic and need an MRI, even luckier you. The machine looked massive to me. A nearly square metal behemoth that sat 6 feet wide and at least the same high with a tunnel in the middle. A gurney-style bed extended from the tunnel like a monster’s tongue waiting to trap me and pull me inside to my death. I stared at the machine and found myself already unable to breath.
“Okay Mr. Re-ah-mart,” he butchered my name again, “You’ll need to lie back so I can put in your IV and then we’ll get started.”
I turned and glared at him.
“How far am I going in?”
“Oh,” he seemed taken aback, “All the way.”
As if I wasn’t angry enough with the events of the day, now fear for my life took over and I had to fight the urge to run out of the room.
“Look,” I explained, “I am claustrophobic. I told them that on the phone. I cannot go into small spaces. Like…at all. They told me I wouldn’t go all the way in.”
“I’m sorry,” he genuinely seemed understanding, “I don’t know who told you that, but for this MRI you need to go all the way in.”
Why would I need to go all the way in? My prostate is only half way up my 5’7 body. After engaging in a stare-down for a few uncomfortable seconds, he offered a treaty.
“Okay, let’s lay you down before I put the IV in and see if you can go in. If not, I won’t have wasted time having to stab you in the arm.”
I wanted to stab him in the neck, but instead I shrugged. “That sounds good.” And it did sound very reasonable.
I laid down on the monster’s tongue and tried to relax, but I felt like a vampire laying down in his coffin and they were about to shut the lid. The tongue shook slightly and I felt myself being pulled into the gaping maw of the beast. Very slowly. I tried to continue to stare at the ceiling and I did…for about 2 seconds. I then made the fatal flaw of lifting my head to see my feet being swallowed into the gray behemoth. It may as well have been the highway to hell. I sat up and swung my feet over the side of the gurney.
“Nope,” I informed him, “Not gonna happen.”
“Ok. No Problem,” he smiled, “That’s why we tried it first.”
I stormed off to the locker area with my ire building. What an utter waste of time. I had to use a vacation day from work to try to get this completed and the day had become a total loss.
I took a few deep breaths and tried to calm myself as I entered the waiting room again and realized not only had I wasted a vacation day, but I had spent $750. That just would not do. I waltzed over to the front desk and tried to smile at the woman who had signed me in and took my money.
“I’m going to need my money back,” I informed her, “I’m claustrophobic and the MRI just didn’t happen.”
I might have said that part louder than I meant to, but I think it worked in my favor. The young lady smiled at me and told me she’d be right back. She had a quick conversation with the lady in the next cubicle (who must have heard my announcement) before coming back and assuring me it would be no problem. That actually surprised me. I was expecting some kind of fight, but they actually did reimburse all of my money to my HSA. The first miracle of the day!
Now I sat back in my car leaving frustrated messages to my wife about the entire process. Like my wife doesn’t have enough stress dealing with her employees at the lab that she needs to hear my making mountains out of mole hills. Well it wasn’t quite a mole hill, but my frustration had definitely magnified the issue. They needed to get a picture of my tumor. But unless they were going to sedate me, an MRI wasn’t the answer.
We had a few more weeks before our next appointment with Dr. Sulek. Since I couldn’t do the MRI and they couldn’t get a foundational overview on the breadth of my tumor, it became a problem.
“So you couldn’t do the MRI because your claustrophobic?” I remember him asking.
“No, that’s not going to happen.”
“Well, could he not be medicated somehow? Anesthetized or even get a valium or something?” my wife had asked.
“At his age, it might cause more harm than good. We’ll have to find other ways to handle this,” He replied.
“And that is?” I asked the burning question.
“Well, it means annual biopsies for now to continue to gauge the growth of the cancer. We’ll have to give you a biopsy every year for a few years until we can identify a pattern of growth. Then we’ll know if we need to start treatment.”
That ugly, scary word again.
Fine, if needles plunging into my taint at about $2000 a pop is what it was going to take, then we’ll just do what we have to do. And at least I had six months to worry about enduring the biopsy process again. Until then all I could do was let the doctor worry about it.
For me, my main concern lay beyond prostate cancer. After all, marching band season had begun.