This is the story of my cancer. I am going to FLAG the beginning of each paragraph that contains gory g-g-g-grotesque and upsetting details. My choice of illustration is from a performance costume by the artist Björk from Iceland. To me the look of the costume design best fits what my tumor resembled when the doctor had it on the screen. At the time I was very distracted, thinking about the intrusion into my abdomen, it was a long thin plastic probe, so I have only that quick glimpse to fuel my recollection. What the doctor was showing me resembled this costume, minus the human form, a yellowish tree with leaf shaped extremities and blood red areas on the root end. I don’t remember if there were platform shoes on my tumor.
Every Tuesday for my job we have a zoom meeting to discuss the business at hand. A few moments before the appointed time I decided to void my bladder. The day was Tuesday January 10.
FLAG The urine came out black, and lumpy, like black bean soup. There was no prologue or hint that this was coming, I am going to repeat many times that I felt fine except for my reaction to what I was seeing, what I was peeing. I have never passed anything but the usual yellowish fluid, sometimes almost clear and always very transparent. It is something I just do not pay much attention to.
I was shocked, I decided not to flush so that I could take a more careful assessment of the situation, and I decided simply to proceed with the meeting and not to say anything about this to anyone until I could figure out what the heck just happened.
The company zoom meeting lasted an hour and a half, I kept my poker face. I said nothing about it, we are constantly busy with projects.
Drinking water is very important. When you get dehydrated the urine gets concentrated and much more toxic, so it is always better to drink more water. So now it was time to pee again.
FLAG The black toilet water had not settled, I was expecting the mess to have the big chunks on the bottom and the water above somewhat clearer. No. It was still lumpy opaque bean soup in there, I added some brown fluid when I next urinated, which by the end of the stream had turned reddish. Not simply red, it was brown like earth or fecal matter, it was somewhat chunky. I never did take a closer examination, these are my impressions. Clearly there was no fecal matter involved, this is all from the urinary process.
So now I had to figure out what to do about this. I would like to point out again and again that throughout this entire time I had no physical discomfort whatsoever, except for the shock and horror of what came out of my penis and into the toilet bowl. I had no other significant physical distress. That created a situation where my fear and horror seemed pointless.
Death is always waiting for us, cancer is one method that death takes us, but whatever happens, like if the cancer drags on and on, or if it goes away entirely, death will come. The cancer might not be what kills, from what I understand death more than likely comes as a result of the harsh effects of the medical treatments for cancer. The treatments are very painful and invasive.
I could suffer from cancer for the rest of my life, or not, and then be hit by a bus or fall through a hole in the floor to finally actually meet death. There are no sure things except for death itself. If I can choose not to suffer, what have I got to lose?
I should probably now go into the context of why I was where I was. I had been invited to a new place, in Maine (new to me, old to the world), for a utopian adventure or experiment that could possibly lead to a situation that might possibly satisfy my notion of my life destiny. This could be where I spend the rest of my life and I might be achieving the most exciting and satisfying goals and accomplishments I had never before dreamed of. Who could resist!
That last sentence is not a question, it is an exclamation. There is a difference. I do not need to interogate or even identify a particular “who” that could resist, thus this is not a question, actually I want to shout for joy that this could be the best thing ever to happen to me. I am going to skip all the details about the utopian plan. There I was in Maine, my host lived in a different location some miles away and I never did see that place. I was in The Carriage House, which is still on the old property where the mansion once was. The mansion burned down in the 1970s and there now is a professional building there, once housing several professional practices including a publishing house and several medical clinics as well as a therapist or some kind of a mental health office. Now the building for professional practices place is empty and without power (or heat) and is being used as a storage facility by my host.
Obviously there are quantities of mold in such places with uncontrolled atmospheres.
I would see my host as much as once a week when the trash was brought from the remote residence for disposal in the usual way, leaving it in the spot out in front of the Carriage House where they come and take it away to the city dump.
I knew nobody else in Maine. My host encouraged me to stay away from the neighbors in a friendly way, I felt encouraged to always be cheerful and polite, exchanging names etc., but never to discuss the utopian plans. My host wants to maximize the possibilities and not become locked into other people’s expectations. I respect and support that. Taking risks can bring surprises.
This whole adventure began as the most exciting thing I have ever done, I have never experienced otherwise such a feeling of excitement and happiness, comparable to being in love with somebody, especially somebody new! Things change as time goes by, this is normal and expected, but the prologue and planning and first phases of this adventure were the happiest moments I have experienced. There were some bumps in the path, but it overall was such an intense and happy thing, I have rarely experienced such joy. It was amazing. Plus, I got to see Maine.
The first thing I did upon arrival was to get started with my health insurance situation, to begin the process of becoming a resident of Maine and get on the lists so I can start waiting for my medical appointments. I was planning on changing the car registration and obtaining a Maine driver’s license, but I never got around to that. I made some progress with the health insurance.
The first thing I did after the zoom and my colorful mess was to flush and to consider what to do next. I do not drive at night because my eyes tend to become overcome by the glare of any nearby traffic or whatnot and I cannot see anything, most importantly I cannot see the white lines on the road, which is necessary, so I tend to slow waaay down and that always meets with annoyance by others. More pertinent to my situation, I had no idea of where to go. Some kind of medical place somewhere, maybe near or not. I know nobody. Nobody knows me.
So I managed to reach someone at my new health insurance place, I had no local physician and otherwise had no contacts except for my host, who would probably have nothing to contribute to my resolution here. I was not trying to hide anything from anyone, I just peed the wrong color which was disturbing, but again, there was no physical distress or any sense of urgency. I felt fine, just freaked out.
Once I got through the first barrier of telephonic robots (please listen carefully as the options have changed, press one for this press two for that) I was told that I should proceed to any available Urgent Care facility, it matters not which one, in these circumstances any one will be acceptable to the insurance plan. The good news is that I was minimally established in the Maine healthcare system. This took a long time to accomplish, and now it was completely dark so driving was not something I wanted to press into. Again, I felt fine except for the sight of the wrong colors you know where, which was not painful but plenty concerning.
The night was consistent, except for the colors. January in Maine.
FLAG The brown went away and became increasingly red, now and then there was a considerable quantity of mucus in the mix. At the most disturbing peak of this strange night of urinating strange colors we went from red to dark red to what appeared to be just blood coming out, then there were some small black objects in the mucus (I thought they looked embryonic, twitching and writhing) which I kept in a mason jar to bring with me when the Urgent Care (the closest one was about ten miles away) would open, which was scheduled to be at seven AM, while the roads and sky are still dark, but getting lighter. I am okay. Except for what is in this jar.
The place had a few others waiting for the moment the doors would open, most of the business they do is to validate the illness of workers who are required to properly document their efforts to diagnose any sense of illness these otherwise presumed to be slacking workers might present with. I checked in to the Urgent Care facility as soon as they unlocked their doors and I was third in line. I felt shakey but in no physical discomfort, I had my mason jar in a paper bag.
The first thing they said was “probably bladder cancer” but they were careful not to seem to be diagnostic in scope as there are so few actual doctors on the staff there, so just hold on.
That was the check in, where I surrendered my warm jar with twitching black things encased in blobs of mucus floating in bloody urine all in that paper bag. When a doctor was available we talked about his kidney stones, as I had mentioned that I had kidney stones in the early 1980s, so that brought about that conversation. His stones were triggered by a vibrating comfy chair he spent too much time in (long story) and mine by dehydration. We both agreed that kidney stones are easy to detect. Reflecting back to those days, I remember begging for death because the pain was so intense. Begging did not work.
The other tidbit I got from that doctor there was that the vitamin D I take every day should be taken when there is some kind of fatty food in my belly as that facilitates the absorption of the vitamin D in the best way. Good to know. Knowledge comes in strange ways, and often out of sequence. Those circumstances require vigilance to interpret.
My concerns were twofold, 1 what the heck just happened, and 2 what set it off right then. None of these two questions have instant answers. I was to provide a fresh urine sample right there in the office (they accepted the jar and I assume they sent it to The Lab) but as I had been peeing all night and not drinking more water, I was pretty much all peed out. I downed several bottles of delicious chilled fresh bottled water that they kindly provided to me and I was allowed to wait. When the pee did come, it went from light pink to clear natural normal urine, no obvious blood and remained clear for weeks afterwards. Why did that happen at that exact moment? Some folks have such problems forever.
The medical term for my situation is hematuria. The most common forms are invisible, mine was very visible. I had 20 hours of experience with this phenomenon, from January 10 at 2:25PM to January 11, sometime late in the morning.
The cause of my new situation became the only actionable remaining mystery. Priorities must be adjusted sometimes.
In the next few weeks and months I made some new friends, the staff at the urology office I was assigned to, as well as a few actual Maine physicians. I had several diagnostic procedures, it took a few weeks to get the Computerized Topographic Scan scheduled and I went in at 7 AM on March 2. I was home before 10 AM, when I got a phone call.
March 2 of the year two thousand and twenty-three was an eventful day. A few days earlier I had placed a call to the property owner I have previously referred to as my host (same person), to discuss some routine details that I wanted to confirm. I do not trust my memory. I wanted to get this right. My host took my need for confirmation as a requirement to repeat the long and complicated full details of my duties, which I simply allowed to unfold, no point in interrupting this carefully thought-out repeated narrative. What I actually had asked for was a specific number (turned out to be 60 degrees) and that I otherwise successfully understood the larger long and complicated details of my duties. This went poorly and my host took this opportunity to announce a change in plans, that instead of me being here possibly for the rest of my life to participate in this utopian event and great experiment, I should leave the Carriage House early, like in the Spring, to make way for a bevy of carpenters who would be transforming my assigned tiny and simple caretaker’s residence into a commercial kitchen. It was time for me to go.
The utopian plans are changed, and if I want to remain in Maine that would be preferred but I would be on my own to make such arrangements. The caretaker’s residence needed to be vacated by May 1, no, make that April 30, or the 29th, at midnight. No more negotiation, the telephone call was over.
Shortly the phone rang again, this time my new friend the doctor of urology, with the news about the results of this morning’s CT Scan.
Bladder cancer is the definitive diagnosis, the tumor is 1.24 centimeters (I thought he said millimeters, but that would be really tiny, too tiny for a CT Scan to show) and the next medical thing to happen to me will be a cystoscopy, the soonest possible time for this to happen would be in a couple weeks.
FLAG A cystoscopy is a procedure that is used to look inside the bladder. The good news is that they do not need to make any new holes. The bad news is that they insert a long thin plastic device up the (my) penis, with a camera and light to illuminate the interior of my bladder. There is no reason to knock me out (general anesthesia) but there will be some local anesthesia applied to the entry way for the device to do its job. Bonus, I would be able to see the camera image of my tumor right there live and in color. I was not looking forward to seeing those images. None of them, from the spectacle of threading the plastic tube up my junk to seeing the monster itself, live and in color, none was something I wanted to have happen. No surprise about that. That is closer to death.
The next day seemed gloomy, I did not do much, I did call my host to say what had happened, there was no discussion beyond “wow that is rough.” Nothing would change the plan to close the caretaker’s quarters. There was nothing else to discuss, but my host was willing to take my calls for other topics, like logistics. I did not take the conversation much further.
My next communication was with the urology department, they decided that because of the definitive diagnostics, instead of the cystoscopy and then a surgical procedure, they might as well just do it once and knock me out and do some cutting while they were in there, so I should prepare for a surgical procedure that would require someone (not me, and not a taxicab etc.) to drive me home and to be there for 24 hours to monitor my situation in case of complications. I knew darned well that my host would not be such a candidate. There was no other driver and 24 hour companion available at that time.
This emerging new chapter in my life would require a place for me to recover, and being alone in an old building where I have just been asked to leave by the end of April was not the best place to undertake this recovery. I have no regrets for my choices.
It was when I was speaking with my surgeon about the details of my procedure that I decided to exit Maine before starting any more invasive processes. Really I was desperate to get out of this horrible event no matter what it took. The outcome from these treatments could be easy or there could be complications which would require even more recovery time. I could be fitted with a plastic bag that would replace my bladder, and I would have to learn to live with that. The alternative would be to die after suffering for a long time, with no bladder.
I was able to return to the place I was before I left for Maine, and so here I am back in Ohio. I had to make the drive, which avoiding night driving takes two days, and because there was a huge winter storm I elected to spend more time in a motel on the way, which turned out to be a wise thing to do. I could sort out my situation and endure the storm in the safety of a motel room. I had all my groceries from my Maine kitchen so I was well equipped, plenty to eat while the storm howled. Eating those groceries made more room in my otherwise crowded car. I had to abandon my stuff in Maine as not all would fit in my ride.
The first thing I did upon return to Ohio was I got the medical insurance revised, which was complicated but not relevant to this story otherwise, and was able to wait until I had a new Buckeye urologist. Same predicament, but the drive is over now. Plus I have friends who can drive me home from the surgery.
FLAG The cystoscopy was one of the most horrifying experiences I have ever endured, so let me tell you all about it. First she (lovely nurse) pushed a plastic syringe (no needle just a plunger with a sturdy plastic pointed tip) up my penis, which hurt like the devil but she did it quickly and it was done. The lidocaine was forced up there into my urethra. The most painful part in these procedures has always been proven to be the tip of the patient’s penis, the beginning of the urethra. We waited for the lidocaine to take effect, which I was not physically aware of as far as my sensations, just the recent jab to my ween. The nurse and I were next waiting for ten or fifteen minutes. The doctor insisted I watch the screen, as he sent the probe up through my dick all the way in there, where I was expecting to see an angry pink lump, but it turned out to be a yellow growth that looked like a tree, with waving branches that had what appeared to be strange shapes like leaves. Due to the magic of optical perspective, the tree looked huge, and the bladder looked like a great cavern, wet and flappy. I want to go home now.
My surgical procedure is called a TURB (transurethral resectioning of the bladder) and had two phases a few weeks apart, cutting down the little yellow tree and later going back in to scrape out the roots. The little buggers sometimes succeed in growing back.
FLAG The first part was very difficult, when I woke up the catheter was in place, my bladder had no new sensations, I felt nothing there, nothing unusual that is. My urethra and specifically the tip of my ween was extremely angry with me, that was what I was sensing. The nurse was concerned as the plastic bag at the end of the tube collecting fluids from the general direction of my kidneys contained what appeared to be tomato soup. I was in no other physical distress besides the urethra, specifically the alarming strange pain at the tip of my ween. After what felt like a long time (several hours) with the fluid progressing from tomato soup to a less dense call it dark cherry, to raspberry, to strawberry to strawberry-lemon in color. Eventually, my urine was deemed to be appropriate for progressing me on to the next phase. I did notice that any physical (body) movement seemed to reverse the color changes away from lemon and back into those red fruit medleys. It eventually got better.
I was sent home, of course now I had a driver, and now indeed there is a plastic bag attached to me, with that inflammed tip, you know where. Navigating the delicate action of dressing myself in normal non-hospital clothing was tricky. I figured out that some people live with a catheter all the time, I saw men carrying them in the urology waiting room. I was lucky, I had the darn thing in there and was told to remove it myself in the morning of the next day.
I got home, I took my clothing off and got into bed where I remained for the next night and day, there was no need to get up to pee, but there was a need to get up and drink water, any fluid really but I prefer water. My Ohio host made me a fantastic lunch too.
It was a long day. I waited until midnight, then an extra four minutes, and then I removed the catheter. I am shifting back and forth from present tense to past tense, and see no reason to clarify these chronological details just now. Deal with it, it was strange and not normal. This is happening to me forever.
Where I am (was) staying is a room I rented from my Ohio host, a mom who has two teen daughters, the eldest of which prefers to live with their divorced dad, the younger one has the room next to mine and she spends lots of time with the divorced dad as well as keeping a very busy social schedule. So she is gone much of the time, and was gone for the day of my surgery and subsequent recovery. She returned at that exact same midnight when this is happening. Why that moment?
FLAG To remove the catheter, one must first deflate the balloon that holds the thing in place. That device allows for the free passage of urine from the kidneys through the bladder and then out into the catheter. When the balloon is deflated the fluid that was in there comes out, so I was in the bathtub, hoping I was doing this correctly. There was some (not much but enough to notice) blood when the catheter came out, so the otherwise normally white tub was a little bit of a gorey mess. I realized I would need to put the catheter itself into an appropriate container, and I had a nice big appropriately sized plastic bag that would work perfectly.
However it was in my bedroom, so I had to walk from the bathroom to my bedroom, passing the door of my teen neighbor. It was at this exact moment, with me reacting to the unfamiliar discomfort of activity in my urethra and that little bit of blood in the tub, that she returned. I was determined to get that plastic bag so I could resolve the situation and then wash the tub and be done with this bizarre and disturbing situation. She knew nothing of what I was doing, as teen daughters are very busy with their own lives and are not always informed of what is going on in the life of the renter, that would be me. I uttered a mantra of expressing my apologies and sorrow at being in this situation, while at the same time she refrained from screaming very very loudly, but she did express her alarm at a naked man in her path to her room. The scream was just enough, not too much.
The next morning I was told by her mom that the daughter did not want clarification and that I should never bring up this topic for discussion. That is the situation remaining to this day. After the catheter came out it hurt like hell but gradually it got better. It may never be back to normal again. Cancer does things like that, some effects are much worse.
FLAG I had to learn to pee again, something that is very important to survival. At first the situation could best be described as incontinence, I had no control but luckily the volume of urine was managable, not a flood. I went through my entire wardrobe of underwear. I had no idea of what to expect, never having done this before.
FLAG AGAIN A word about the catheter’s presence in the installed state. That inflated stablizing balloon fills the bladder and causes a sensation of urinary urgency. I felt the strong and overwhelming need to pee constantly, while the actual flow continued all by itself, dripping into the plastic bag shaped container which I was advised to keep lower than my bladder so as to work with gravity to direct the flow through the tube and into the containing plastic vessel. I was expecting the presence of the catheter to negate all forms of the sense of urinary urgency, but that was not the case, it was extremely uncomfortable.
The second part of the TURB procedure went more easily, as a bonus I came home without the catheter this time. My incontinence quickly vanished, but there is a well known natural reaction by the urethra, and that is burning pain. I do not go into the family bathroom (my choice not discussed with anyone here) I instead have a urinal, a plastic bottle with an appropriate opening where I place my penis and negotiate with that muscle that holds the urethra shut until it is time to release the urine. Did I mention it burns? This is worth emphasizing, in my opinion.
That is not too gross, is it? Should I have flagged that part?
FLAG The burning has subsided but the flow is not the way it used to be, is this forever? I need to stand with the urinal in place sometimes for ten or fifteen minutes as I negotiate the painful burning, and then the flow ranges from dribbling, to partial stream that sprays all around (without the urinal I would soak my clothing the floor and the walls) but most of the time the stream is normal, except that it will abruptly stop.
FLAG I assume they sent the little yellow tree to The Lab, but I deduce from a comment from the doctor that sometimes there are fragments which can impede the natural flow of things. The stream can be inconsistent, with spontaneous pauses followed by a burst which sprays, and that might come from those stray bits or from some other kind of chunks in the urine itself.
Next I begin an infusion process, as I write this I have completed the surgery and had a consultation where this next phase was described. The duration was presented as a three year process consisting of visits where the catheter is installed and a potion sent up in there to wash and marinade the bladder interior, causing my natural immune system to create a reaction to the fluid as well as any subsequent tumor growths.
FLAG I was told that for three years every two weeks I would come in for this treatment, remaining with the catheter installed for the infusion. This would be necessary to keep the critters from returning. However, the most recent consultation revealed new details.
I will have six of these treatments, there will be no sustained exposure to a catheter, and the whole thing will conclude before December (this is September as I write this). I will report at 9AM and:
FLAG The fluid will be introduced up the urethra, I will lie there in four positions, face up, to the side, face down and to the other side. Then I will pee and go home, as there is no anesthesia I will have to drive myself. The part about the introduction up the urethra is why this paragraph is flagged, anything going into my penis is unnatural and grotesque beyond imagination, and I have a heck of an imagination.
I am one lucky puppy, to do this they had to make no new holes. I will have to have a cystoscopic examination from time to time for the rest of my life to keep track of what is going on in there. Most cancer treatments are much more invasive and painful. I am getting of easy SO FAR.
As we all know, cancer comes back much of the time, and tends to migrate to new places.
My journey has only just begun. My friend who is in his 80s had bladder cancer which migrated to his lungs, creating a much more invasive and painful situation.