2025.....
I'm sitting here after reading my post from last year almost dumbfounded about my thoughts at the end. They weren't just thoughts apparently, they were predictions of the year to come.
The year started pretty good. I was getting back into exercise a little, the tournaments were rocking along, I went back on line and met someone right away that was cute and groovy enough to at least hang with a little while, and my weight had stabilized, so when I started having this strange pain in my tailbone area coupled with MASSIVE pain and constipation when going to the bathroom, I wasn't too scared of getting off Zepbound for a while. I assumed those pains and everything else associated with the possible side effects were being caused by that.
I could not have been more wrong.
In late February, after suffering through another couple of months of pain in spite of being off Zepbound, I finally decided I needed to get a colonoscopy. Something Id been putting off since 2020 when my PCP told me it was time to get one. I made the appointment for the middle of March, but ended up having to reschedule it because I couldn't get a ride there and back easily and didn't want to ask my new friend for help. I finally did, and one of them, Suzanne, signed up to take me at the end of April.
I remember the prep being so awful that I told my sister, Elise that I was NEVER doing this again. The next morning Suzanne showed up and took me to my appointment. At this point I was having rectal pain regularly and it was bad enough that I already knew something was wrong in there. I was not prepared at all for what it turned out to be.
When I woke up from the procedure I was met with Suzanne standing there talking to the Dr that had preformed the procedure. I had already given my permission for her to know what was happening in case something went wrong, but I was confused as to why they were standing there in front of me having what looked and sounded to be a very serious discussion about my test. I was still in the process of fully waking up when the Dr blurted out that he had found a large tumor that looked malignant right inside my butthole basically. It was apparently huge, and so malformed that he knew without a test to confirm it that it was bad.
We left there with a print out of some of the pictures from the procedure and an appointment 2 days later to have the scan explained to me. It didn't matter though, because he said it out loud, and from that very moment my life has never been the same.
I have cancer. There it is...I wrote it down so its official.
Not only do I have cancer but I have BIG BAD cancer. Stage 4 colorectal cancer to be precise. Stage 4...meaning its metastasized, meaning its been there unchecked long enough to et really happy and expand into new areas. Specifically my lungs at the time, but now it has also gotten into my liver and tailbone. Its bad, its ruthless, and I didn't know it at the time but its fatal.
Fatal....
What do I even do with that word?
2 days later as scheduled I would be sitting in the Drs office having this explained to me. Going through the weird nasty looking pictures and telling me that its gotten so big it was in an areas close to my sphincter and anus which could possibly mean having to have a colostomy bag procedure. Once he said that I heard very little else. A colostomy bag...I couldn't think of anything worse than having to have that. My life as of that moment would never be the same and as surreal and UNREAL as it was I felt it. I KNEW it inside.
No more dating. No more pinball, no more anything except cancer. What was so weird to me was that other than the pain I was having I didn't feel sick. I didn't feel like I had a fatal disease at all so how bad could it REALLY be?
When I told Elise she immediately went into SAVE HER mode. I was still mad at Beth for being such a drunk fuck up after her life saving procedure that I decided not to tell her just yet. I didn't tell my mom either. I didn't know what the full diagnosis was yet and didn't want to upset her unnecessarily.
I thought about this blog/diary and over the next few days where I would get an MRI and CT scan in the same day under the guise of it being a critical situation, and started to write about what was happening to me but I was so overwhelmed with everything that was happening I put it off.
I stared to write about this on a plane in May because it was...is...so huge I needed to get it out of me, but I didn't know how to start. Also, I think a part of me didn't want to write it down because then it would become real. Well, it became real on its own, and my ability to sit and write about ANYTHINIG disappeared about 3 weeks later.
The plane I was on was taking me to meet my sister, Elise, in Cleveland Ohio where I was going to be seen at one of the best cancer hospitals in the country, The Cleveland Clinic.
Elise was already there for work and so I was on the plane by myself. I remember starting to write about it on my Ipad but I felt self conscience, like the guy next to me or behind me would be looking over my shoulder and see that I was writing about cancer. Then they would look at me with sympathetic but sorry eyes and tell me how sorry they were are about it. I was still not able to even conceive of the full weight of it because the diagnosis that I got didn't give me a stage, or tell me that I was dying, so I assumed that I was going up to Cleveland to find a solution. Treatment that might suck but that would ultimately cure me of this thing and prevent me from having to have an Ostomy.
We had 3 appointments all in one day that started out with me getting scoped in the office of the surgical oncologist. A humiliating and painful procedure at best. It told her that yes, the tumor was very big and very close to the sphincter and anus, which we had been told was going to cause me to have that horrible operation, but she seemed confident that it would not be necessary and that after having some treatment to shrink the tumor, she might be able to remove that section of intestine / colon without having to take the sphincter or anus thereby saving me from the ostomy procedure. We both left that appointment feeing a bit hopeful for the first time in 2 weeks since the nightmare began.
The next one was with the radiation oncologist. This is where we decided that a treatment of intensive radiation specifically targeted at the tumor in the rectum (the lung nodules were too small to "zap") would be the first thing to do and made an appointment to return in another week for 5 days during which time I would receive treatment daily. They did all the prep needed for it, told me of the risks of side effects which included rectal incontinence, rectal burns, and a host of other very unpleasant things, none of which I thought would happen to me because the risk was "small".
This would be proved to be so very wrong its scary, but I'm getting ahead of myself.
Again, we left that appointment , heading to the final one with the chemo oncologist, feeling very good about the way it was going.
So, here we are in the last appointment. The Dr was explaining the chemo regime he thought would be best which was the first thing I didn't understand or expect after the last 2 appointments had gone so well. I was hearing him say I needed to be on chemo for a number of days every other week, hooked up to a pump that I would then take home with me for 2 additional days, and that this would be the regime that I would have to follow FOR THE REST OF MY LIFE.
The REST OF MY LIFE??? What? Surely not...I didn't understand. It was Elise that finally got him to dumb it down for me. I'm not sure that she was prepared to hear what he told us either, even though I think she was getting a much clearer picture of what was actually being said to us than I was.
How long I had to live. That's what we were actually talking about in "Dr code." I still didn't understand. I thought we had just come from 2 Drs that had told us with great confidence that they had answers that were going to not only treat this but cure it. Sure the road getting there would be hard but it was doable. I didn't understand, or maybe I just COULDNT understand.
When you are being told that you have 1 year or less to live without treatment, and 3-5 years to live even with treatment...treatment that is debilitating in itself, you don't really hear it right away. But there it was all the same. That was my real diagnosis. The treatments were there to get me to that 5 year maximum and to hopefully lessen the pain that I was having so that my "quality of life" would be as good as possible.
My Quality Of Life....I've heard that phrase so many times now it rings in my head daily, especially now that I actually have those nasty side effects that we were told about from the radiation. Evidently I got ALL of them, plus a nasty wound the size of my hand covering my butthole and even going inside it, that up until about a month ago was not healing at all, causing massive pain to the point that I'm now on enough opioids to anesthetize a whale, and keeping me from doing pretty much everything except laying in my bed. Not sitting, laying, because I couldn't ...still cant...sit down in a normal chair without pain. This wound got so bad that every Dr that saw it would tell me they had never seen anything like it, including the radiation Dr at the Cleveland Clinic.
Again...getting ahead of myself...there is so much to say I don't think Ill get it all out before I have to stop writing today.
When we left Cleveland I came home in a cloud of sadness unlike I have ever experienced. We were about to go into summer. I had to get a port installed in my body to be able to administer chemo right away because it was/is such an aggressive cancer I HAD to start chemo ASAP. I HAD to get on the schedule at Emory NOW NOW NOW! I HAD to do these things NOW because my life was on the line, but all I kept thinking about was my "Quality of Life".
What kind of quality would I have hooked up to a bag of poison every other week? It was the end of May, and the side effects of the radiation were starting to show through...when I say show through I mean literally through as in that beam burned me straight through and out my butthole.
I didn't want to start ANYTHING, and after the radiation was starting to get bad, was seriously considering not doing anything else. No chemo at all. I didn't feel like I was dying and was afraid if I wasted this precious time where I did feel OK then decided to stop later if it became too much, I would have wasted the last chance I had to do anything while my body still felt half way normal.
Well as it turned out, I went through wit it, starting the first week of June. The first session was awful. I was in so much pain in my rectum I could not even stand or walk when I got to the cancer center in Midtown. My friend Tiffany took me to that first session. She sat there looking helpless while I was wailing and crying in pain.
They finally hooked me up and sent me home after what seemed like the longest day ever, and I still didnt know what was causing the pain so I just assumed it was something to do with the cancer itself. WRONG - the radiation.
The next week was my birthday and Id been getting progressively worse, so finally on my actual birthday I got a call from my assigned oncologist (which I did NOT care for at all) who told me I needed to pack a bag and check myself into the oncology urgent care unit at Emory Winship Midtown. I started to bawl. I started to panic. I started to just give up.
I didn't give up though. I went. So happy birthday to me, I got to be in the hospital on my birthday and ended up staying there a week.
Things would just get worse from there. All summer my wound festered and finally went narcotic after no one could fined a solution other than having ostomy surgery (which I flatly refused and now I'm SO glad I did) until finally after ASKING to be put in touch with wound care and seeing their hyperbaric treatment pods and asking what they were for, was recommended to receive hyperbaric treatment for the wound.
It was the end of September, and after trying to do both chemo and the hyperbaric treatment at the same time, decided that the wound was NEVER going to heal if I was actively doing chemo...something that again I had to deduce myself because no Dr was telling me this...decided to stop the cancer chemo treatment and focus on healing this horrible wound that kept me in my house and bed all summer long. I couldn't even go swimming. I couldn't go for a walk. I couldn't do ANYTHING. There simply was zero Quality of Life.
Its now the last day of the year. At the beginning of December I had an MRI and CT scan to see where the cancer was. At the time Id been off chemo for 2 months. Now it has been 3. The scans were not good news. The cancer is now in my liver and Sacrum (tailbone). There were 2 spots on my liver and a "suspicious" spot on the tailbone plus more growth in my lungs. 2 months...that's all, and that's how much it had already spread. I'm sure it has spread more now, and truthfully I have been putting off starting chemo again in spite of knowing that because my wound is SO CLOSE to being healed and I'm afraid if I start again before it does that I'll be right back where I was before. Regardless, I know if I want to see anything close to 5 years I have to start again, so Monday January 5th is the day.
I was supposed to start yesterday, but asked to change it and now I am about to stop writing to go get in the shower as I have New Years Eve plans.
Its with the same people as last year, the same house, but with more friends that I've made through pinball coming this time.
There's so much I need to say about these people. These WONDERFUL people that have been so supportive of me through this. I have truly made some life long connections and even though I had some rough spots with a couple of them over the summer, its still an incredible gift that I have these people in my life.
One person in particular I must say something about is Gwenn. Our friendship was always a miracle under the circumstances, but I am SO glad to have her in my life. She is truly a blessing and a gift. And my sister, Elise the only one I have left now because Beth died in July...(yes Beth is gone, which is another whole post by itself that I will definitely get to). Elise has always come to my rescue. Always. I wish I had been closer to her over the years but if this horrible disease has given me one positive thing its her. We are closer now than we have ever been and I am so grateful for her. I have not treated her well over the years. My jealousy of her incredible life has gotten in my way in the past I think. Seeing her sacrifice so much these past 7 months just to try and save me is something I cant describe. Its just incredible. I love these people, and even though I may not ever have the real love of a man in my world I can say without a doubt that I finally know what it feels like to be truly loved. THAT is Quality of Life.
These people ARE my QUALITY OF LIFE. So I'm going now to get ready but I know I wont neglect this dairy anymore. There is a lot more I need to say and I need to say it NOW while I still can. Death is a very real scenario for me now and, if I don't pay attention to it its going to grab me and I'm simply not done yet.
Every year I try to project what I want to make of the coming year. I am at a loss right now except to say I want to LIVE and I want my QUALIT OF LIFE to improve. I want pinball back. I want my friends back. I want my life back even if its always attached to a chemo pump. I am not done yet...I am NOT DONE YET!!
I AM NOT DONE YET!!!
