Cancer; Enough already!

(This was written before the most recent episode and then updated since.)

“You can take your pancake and shove it up your ass!” was the statement that was a bridge too far for Robin. For me it was simply expressing that I was upset and something akin to what I might have said countless times in my past relationships. I’m not saying that it was, or is, okay to say those kinds of things. However to my way of thinking it shouldn’t be the cause of the dissolution of a relationship that was allegedly made binding in a ceremony that was the culmination of many lesser ceremonies with the shaman and his apprentice in Peru, which is a story for another time. 

Robin and I were going through a rough patch, no doubt, but I felt that we were still far from being out of options for resolving our differences. Of course what I thought in that regard didn’t matter. So that day I started making arrangements to move out. 

The next day I went to get a physical that had been scheduled for maybe a week or two. Being on my early 40’s at the time the doctor took it upon himself to do a prostate examine. And here’s where the cancer stories start. 

So, yeah, after the finger probe came the biopsy and with that came confirmation that I had prostate cancer. Next came the decision about what to do about it. The cancer was in the early stages and one strategy for prostate cancer is to “wait and see” what happens. That is a strategy because prostate cancer, when it shows up, typically shows up in older men who are likely to die from other causes before the prostate cancer gets them. In my case, in my early 40’s it would be likely to kill me if it wasn’t radiated or removed.  Plus I was given the impression by the surgeon, who told me that he has done hundreds of these things that it should be no big deal to remove it. So the decision was made to remove my prostate. 

Somehow I forgot to tell him that I had a hernia mesh placed inside of me and this caused some kind of problem that resulted in a massive loss of blood. I can’t recall the amount of blood that they told me was lost during surgery these 20 years later, but they all had said it was significant. 

It is common for a man to become incontinent and impotent while healing for these kinds of surgeries. So while the plumbing is healing from the operation a man is to keep a catheter in place for a specific amount of time. The error of my thinking is so clear to me now that the fact that I removed the catheter early in order to have sex with the woman I was seeing is utterly absurd in retrospect. But I did do that. From that came two big problems; one that was rectified, but with difficulty, and one that I have had to live with and always will. 

I was staying with a friend who lived maybe an hour and a half away from the doctor’s office. I notice that it was becoming hard to urinate so I called the doctor to see what, if anything, I should do about this. Since it was a Friday he told me to get into the office the following Monday. By the time Monday came around I couldn’t eliminate anything! The drive to the doctors with my full bladder was uniquely horrific. By the time I got in to see him I was going crazy with the need to evacuate my bladder. He assessed the problem and informed me that what he is about to do needed to be done immediately, no time for pain killers and that it is going to hurt plenty! What had happened is that my urethra had healed shut so he basically had to break through it by jamming a rod up my urethra and when he did there was close to two liters of urine and blood that filled up the container he had. After that was done I needed to self-catheter 3 times a day, literally breaking through any accumulated scar tissue forming in my urethra for a month in order to prevent a reoccurrence of this issue.   

Then as time went on I couldn’t hold my water at all. As I kept going back to the doctor I kept getting told that it is just taking longer than usual and to do frequent Kegel exercises. And I did those to the degree that I have said that I would have been able to pick up a table with those muscles at that time. Eventually there was a suggestion of an artificial urinary sphincter. The Metro Urology folks did some tests of my bladder and they claimed that I shouldn’t need one. This made no sense to me because, well, of course I needed one! I couldn’t hold my water. To this day I can’t understand what that was all about because then I went to the Mayo clinic to get a second opinion the urologist there said of course I was appropriate for one. Dr. Casper put it in. 

Unfortunately these units are not 100% reliable on the best of day and, as I soon found out, susceptible to being released at any times if I were to, for example, cross my legs just right, or sit a certain way, or, as I found out in the middle of a public place with people all around, when I got off of a motorcycle having activated the pump while riding. While sitting on the motorcycle seat the pump that would let the urine flow was activated but my urethra kept the urine in because it was crimped from sitting down. As I got off the motorcycle, wearing shorts and sandals, with folks all around, my bladder emptied like a water fountain down both legs onto the ground. Fortunately I have developed a sense of humor about these things and I genuinely laughed at the absurdity of it. But that isn’t always the case. For example last week I was at a casino and sat on it wrong and suddenly had jeans full of piss! So, those are the kinds of things that can happen at any time. 

Then approximately two years after they removed my prostate came the next episode. As a follow-up to prostate cancer I would get regular PSA (prostate specific androgen) test and it was discovered that some cancer had spread from my prostate and was growing. It was located in my lower abdomen and so I had to go through radiation treatment every day for 7 weeks. I can’t say that this was much more than a time consuming irritation, but I would also say that it counts as a cancer episode. 

Then in late 2018 and into early 2019 I had been experiencing an irritation in my throat that seemed like a minor sore throat that came and went. That is until it didn’t go away. When I finally got that checked out there was a large tumor found at the base of my tongue. 

This stage 3 tumor was often described as “massive” and “advanced”. Most of the time the treatment provided for tongue cancer included that they would remove what they can with surgery and then combine radiation and chemotherapy for the rest of it. My tumor was wrapped around a blood vessel and I was told that if that blood vessel was to rupture that I may as well say goodbye. I was still trying to get the insurance company to pay for my treatment at the Mayo clinic where they have the ability to provide proton radiation, one of five facilities worldwide and highly recommended. Because of the delay in payment I couldn’t get started when I wanted to. Later that very day that the doctor said what he did about his concern with the blood vessel I started spurting blood out of my mouth. 

I assumed that the blood vessel had ruptured and that there was no time to wait for an ambulance, even though I was thinking that this was “it” and it was time to say goodbye. Still, I was disinclined to sit and wait for the inevitable to happen, so I called 911 and jumped into my truck and sped off to the nearest hospital with the 911 operator on the line. As I drove as fast as I could my lips, face, shirt and truck where now bloody and getting worse. I managed to make it to the hospital where they got to work doing what they do and somehow whatever was the cause of the blood spurting did coagulate. In the meanwhile I had called Diana for what I thought was my last goodbye. It turns out our “last goodbyes” were to be repeated many times over the next couple of years, but that would be a story for another time. 

And just as saying my goodbyes to Diana would happen multiple times over the course of the next couple of years, my trips to the emergency room for one reason or the other occurred many times as well. In fact six trips to the emergency room happened for one reason or another during that year. But that gets ahead of the narrative as well. 

The insurance company finally came up with the money, which had to be prepaid to The Mayo Clinic. I had insurance through a health share and they told me that I would get reimbursed whenever I had to pay out of pocket, which I did to the tune of many 10’s of thousands of dollars, of which they have yet to reimburse me anything. 

I managed to get into housing near the clinic while I was getting treatment. My sisters Donna, Joy and my friend Ryan came to assist me through this. Diana was dealing with her own issues and told me that she felt that I had to go through this ordeal without her for both of our benefits. I took that as well as can be expected on the outside but I was hurt, disappointed and confused on the inside. Still I loved her, and I still do, and I asked her to marry me as my treatment started and she said yes, which made me very happy. 

Still, the treatment was a nightmare and I would not wish it on anybody. A necessary part of the process was to have a feeding tube because eating was simply impossible. A radiated throat is like having the worse sunburn you can imagine all the time. One nasty feature of this was that throwing up frequently while having a radiated throat. I would say that it must feel about the same as dragging hot coals across ones throat. Then there is the typical loss of strength, to the point of needing a wheelchair, the muscle atrophy, the natural and normal depression and as an extra added bonus for me I have a nodule on the back of my head which is painful to lay on. No matter what they tried to mitigate the pain it didn’t work. So I needed to remain completely stationary for maybe forty minutes every day for 7 weeks as everything inside of me said to move out of the discomfort and pain. Seven weeks of nausea, throwing up, general pain, fatigue and so on until that part was over. 

But that, by far, was not the worst of it! One is told that the next few months after the treatment were going to be hard. They said that the 8th week felt like the 7^th, the 9^th like the 6^th and so on, until a person recovers. I was adamant that I was going to put in whatever kind of work I needed to in order to recover and the first few weeks after the treatment was over I was doing a little better and encouraged. Then something happened and the doctor’s couldn’t really explain it except with the statement “everyone is different” which I heard far too often. But this was very ugly. 

What happened is that my life-force seemed to be just drifting away. I literally slept for 12 to 16 hours a day. To be clear the sleep wouldn’t be straight on through because an estimated 20 times each night I would awaken to drink water with what is the driest mouth you can imagine. Then, as a result of all of that water I would have to go to the bathroom maybe 10 times a night as well. You see radiation of the mouth will compromise, or destroy, the saliva glands, which, to this day, two years after my treatment, are still compromise. My fatigue was such that even when I had slept all that time I would never feel rested. When I couldn’t sleep anymore I would stare at the walls for an hour or two without much thought other than, for me, how long I was willing to endure this? If I was able to make it down to the couch and I was able to eat a little without throwing up, that would be a good day. 

I just kept sinking, or at least not improving for a couple of months, if not more. I came to the conclusion that I was to take my own life as soon as I was able. By that I mean that there were plenty of times that I thought about eating all of my pain meds and that would be that, but I had tenants living with me and I didn’t think that it was right to have them find me, nor did I think that I could forewarn them without some intervention on their part. So I figured that if I could get up enough strength to catch a plane to someplace warmer, like Arizona, since it was winter in Minnesota, drive far into the desert, do the deed and let the wildlife take care of the rest, then that was a good plan. 

Meanwhile, during some of the worst of those days Diana broke up with me, which I thought was a pretty special thing for her to do. And even after that, even as my primary motivation was to kill myself, I wanted to see her one more time to say goodbye before I went. 

The trip to Italy was a nightmare as one might expect. The pain, fatigue and nausea were constant. The pain meds I had were oxycodone and fentanyl and not nearly enough but I managed to get to her. She had been suggesting for some time that I eat natural organic whole grains and make a very specific type of vegetable juice several times a day. But my energy level was such that, for example, if I dropped something on the floor it  was a tough decision for me about whether to pick it up, or not, during those days. So the idea of making myself the kinds of foods she suggested seemed next to impossible. If one has never been that depleted of energy to that degree I don’t know if that sounds like anything other than an exaggeration, but I promise it is not. In any case while I was there visiting her, for what I felt was the last time I told her that I would do what I could to eat whatever she put in front of me. At that point I had not had any kind of appetite for probably more than a year, I was still throwing up and getting food into myself and keeping it down was an effort. With loving effort she fed me her kind of food and gently encouraged “one more bite” over and over. She loves to walk and while that was a huge challenge for me at that time she also encouraged that we go “just a little bit further”. 

I noticed at some point after maybe a week, or two of her efforts that I was in fact feeling a little bit better. I was encouraged by that fact, but I couldn’t see myself doing all of those things on my own. Then, lying in bed one night, the night of the 4^th of March, 2020 as it turns out, I came to a conclusion that I was going to do it as an effort of transformation! That decision was made a couple of days before the U.S. government mandated a return to the country for all citizens due to the covid pandemic. 

So for the next year I put forth the effort required to eat right and exercise to the degree that I could on an almost daily basis and my health did come back from what I would guess as 10% life force to 80%. Still at the best of times I was still in pain, fatigued, I always had a dry mouth, it is still hard to swallow and my mouth won’t open all the way. My neck muscles are tight to the point of being like steal bands, with limited motion and sore all the time. The list is not complete, but gives the picture of constant pain and discomfort that I live with I would think. 

With all of that going on it was not all that easy to keep a thoroughly positive disposition. Of course it helps that I am an expert in regards to shifting perspectives and keeping as positive a disposition as possible under many circumstances. I stayed focused on the joy of doing my work and imaging the wonderful future that was planned for me and Diana, who in November of 2020 had become my wife. 

Some of the noteworthy stories that are left out for the sake of the narrative flow include the decision I had made to create a youtube channel as a legacy. My idea was to give away some of the advice that people seemed to benefit from over the years when they came to me as a therapist. The channel is called “Mental Health Free For All” and it got some attention but since I was going through cancer there were plenty of people who wanted to know how that was going, so I took time and energy to offer that information as well. But then, at some point in my treatment I could no longer speak. Then as I focused on a return to health and over all time away from that project it just lost steam. 

At one point as I started eating without a feeding tube what I could since it was a necessary part of the process, but the feeding tube had not yet been removed. I awakened one morning to find that the feeding tube had come out of my stomach. To understand my process it might be helpful to know that when I first got the feeding tube the folks at The Mayo Clinic specified that if this happened to get to a hospital right away. The problem with getting to the hospital right away was that I was on a cruise somewhere in Mexico. When we reached port I was rushed to the hospital by ambulance. Then as it seemed my luck was nowhere to be found, the MRI machine that they needed to scan my insides to make sure there wasn’t any part of the device left in me broke down just then. So, off to another hospital in another ambulance. That turned out to be nothing more than a serious waste of money, which I had to pay out of pocket for it all. 

Another thing that happened to me during this time was that when I got to the point of no longer wanting to be alive I felt like it was a good idea to get some methamphetamine for energy and some heroin for the pain. I had not used heroin for over 40 years. The result was not good. I woke up the next day from using the heroin and I sitting against the wall with a horrible pain at the tip of my tongue. The guy who I bought from and who fired me up said that he nodded out for a little while and later found me outside of my home wandering around. He told me that he guided me back into the house where I collapsed and started convulsing. He told me that he was worried about me swallowing my tongue and opened my mouth. The next thing he know is that he said I clamped down on his thumb which he finally pried out of my mouth, but then I clamped down on my tongue. The poor guy said he was trying to figure out whether or not to call 911 when I finally relaxed and stayed passed out. 

I’m relatively sure that when I think I am done with this narrative that I will remember plenty of additional noteworthy things to write about. For now, it’s time to move on. I will say that whenever the thought of getting cancer ever again came to my mind that my thinking has gone to the thought that I simply will not deal with it being done with the effort of trying to keep myself alive through these miseries. Well, it seems that notion is about to be tested once again. 

The reason for my decision to write this out now is…you guessed it…It seems that I now have cancer in my lungs. I have been having health issues since the dissolution of my relationship with Diana and my work that happened a couple of months ago. At first I thought it was just because I wasn’t eating, or sleeping well. But my health became bad to the point of concern and I asked my doctor to do some tests. One thing led to another and the first working day after I had an MRI I received notification that an oncologist wanted to do a virtual meeting as soon as possible. I got the message the day I was leaving for a cruise to Alaska.  I asked my primary physician to let me know what he could and he sent the following message; 

Hi Dakota 

Thanks for the message. Sorry for the delay - I was waiting on the final read by the imaging people. 

Unfortunately, it looks like you have numerous spots in your lungs that they are worried are metastatic (cancer spread). A few are 2 cm in diameter (almost an inch.) 

I would recommend contacting your cancer team at Mayo ASAP to let them know we did a scan and this is what we found. They might be able to access the imaging through their system. 

Is there a good time to call you today to review these? I dislike sending messages like this through MyChart but wanted to reach you as quick as possible 

Which is obviously not a message one hopes to see. To make matters more challenging still I received that message on the day when the cruise to Alaska sets off and I have unlimited beverages, including alcohol, all day every day. 

Addendum; I wrote this before I knew that I was going to create a blog but it obviously has a place here. I am pleased to say that I spent that whole week not drinking. However, as reported in the new cancer story I did start to drink maybe a week after I returned from the cruise, unable to sleep and finally deciding after a few episodes of drinking that I prefer to go out, if that’s what happens, clear headed and not in a miserable drunken mindset. So, I’m hoping that will be what comes of it all. 

If I ever get time to write the story on drinking and drugs that will be a doozy!