Birthday Blues and Gratefullness

 Well I made it a year. 

I don’t know if my life expectancy of 2-5 years includes this past year or not, so this year might be my last I suppose…. I hope!

I’m still in treatment, even though I opted to take out one major ingredient due to the side effects that some with it. The blood tests say it’s doing something. My oncologist says it’s basically the same treatment as before just adding back in the one ingredient that they took out in July last year.

It makes me wonder if they had treated my butt wound efficiently instead of letting it get so bad, so that it would not have been necessary to take that one ingredient out, if the cancer wouldn’t have spread to my liver. 

I guess it doesn’t matter because it is what it is. Moving on…..

I had a really nice birthday this year. Gwenn came to see me for a whole week, and we had a birthday tournament on Saturday the 13th that was the biggest Saturday to date. Also, the Belles (some of them) led by Meri Pyle all dressed up in Elf costumes in honor of my Lord of the Rings theme which was awesome! Unfortunately I was in so much pain I was unable to stay the whole time, and missed the end because I was late for dinner. A nice dinner but too many people to really enjoy seeing everyone and it was also expensive since half the people there didn’t want to split the bill evenly, so I am out about $250. 

The best part I guess was Gwenn being here. It’s amazing how much our friendship has grown in the past 20 years, but this past year has been big. She’s been my champion in many ways during this fight for my life. I wish we lived near each other but that’s unlikely to ever happen so I’ll take what I can get with her visits.

I’d like to visit her as well but traveling for me is hard at best.

Elise took me and Anne to the beach for a few days at the end of April, which was very nice, but it was so quick I was barely getting comfortable before we had to go home, and the plane trips were ok but I think we could have driven and been ok.

I have a trip planned for September to see Alex and Scott in Port St Joe which I will be driving to so I hope my butt will allow it to happen.

I was actually doing pretty well with pain up until the start of this last treatment. I don’t know why it’s different except for the new ingredient, but for whatever reason my pain levels have spiked and it’s gotten to where most days I’m pretty miserable. I don’t want to start taking more pain pills because it’s taken me 6 months to get off the opioids to this point. 

My insurance company is no longer paying for my new non-opioid medication so I’m shelling out $1,000 a month out of the $1,400 I get for disability so my funds are always low. I still spend money on stuff for my 3d prints for trophies and other random crap. I’m still completely debt free though which I am very proud of.

I’ve thought about just letting the credit card go and paying the minimum, but it’s been so long since I’ve had debt I just can’t make myself do it. 

No one but Gwenn thinks I’m going to survive this so no one is thinking about money in the future. I have so little left that the longer I live the more likely I’ll end up having to sell mom’s house and go somewhere that I don’t want to be.

Obviously if - WHEN I survive this and am in remission I would go back to work and hopefully be able to get my photography business going again, but it’s been so long since I touched my cameras I would need to relearn some things I think. Technology has passed me by in many ways and I am basically a dinosaur when it comes to current innovations and techniques. That was sort of happening before my cancer though. My work had all but dried up and my time was spent doing pinball things and taking care of mom.

I’m still doing those things but lord they are hard to keep up with! Most days I am just tired and unmotivated, but even when I am motivated the butt pain keeps me from being able to sit and work on anything, including my writing, which I think about often but as we can see, rarely do anything about it.

I brought my iPad with me to treatment today and was determined to write something down. ANYTHING! 

I have so much to say and I don’t want to leave this world without saying it. 

I suppose only Anne will be able to read it, but at least someone will see my heart pouring out at the end of my life.

The end of my life….its so hard to comprehend. Even through all the pain and suffering I still don’t feel like I am “dying”. I know people get used to their routines, even horrible ones, and I have done the same thing.

My routines include staying close to my bathroom at home due to the randomness of my bowel control, or lack there of, and my going out and social time is pinball one a week. That’s pretty much it. I rarely get anyone visiting or wanting to hang out. I have gone to dinner a couple of times with Tiffany and Alejandra which was nice. I’d like to do that more often it just costs money that I don’t really have.

I’d really like to go on a hike, or be able to swim for exercise, but neither are possible because of my stupid asshole. Plus when I do anything strenuous I start getting winded, then have chest pains and have to lay down. I don’t know if that’s the cancer, the treatment, or me simply being horribly out of shape. Whatever it is, it’s awful, and most of the time I feel like a trapped animal being poked and prodded for some horrible experiment. 

I miss my life. I mean the life I had in Decatur. I miss my little house. I miss Beth. 

I was missing my Decatur life long before I got this shit though. I probably should never have moved to Marietta, but I do love it here. I’ve always liked the area more than Decatur, and my life with the pinball community is far different than it was down there. I highly doubt that I would be doing anything with leadership or tournaments if I’d stayed there. I guess I’ll never know so it’s pointless to dwell on it.

I do a lot of that….dwelling on things…I can’t seem to break that habit and “let it go”(thank you Anne) and I find myself constantly looking backwards instead of forwards. That is something that I have always done, and it’s never really been helpful to me. I suppose it’s ok to look back at mistakes if your goal is to never make those mistakes again, and I have definitely done that, but I also get lost in the fantasy of “what if”. 

What if I’d decided to rent my little house instead of sell it? Would Ted Waters, the man who bought my house and died from falling off the front stoop and freezing to death be alive? Would I have been able to keep it up and even make improvements along the way, all the while paying off the mortgage and making a little income on the side? Would I have been able to go back to it after mom died, or even now, with this diagnosis, be able to go back home and live easier in a smaller house that’s all on one floor?

What if I had not gotten back together with Ray in 2019…or even 2022? Would I have met my mate? Someone that might have actually moved in with me and really shared my life? Would I have even moved? Would Beth have gotten better and stayed sober after her transplant with me still down the street to see her every day? 

What if I’d finished my drone education and actually gotten my license? Would I be making money even now in this condition? Would I have changed career paths and focused on drone work, or simply added it to my photo services, making my business bigger and better? 

What if I’d farmed out extra work, much like the company that I started doing real estate work with, making my business grow and not having to worry about people doing video taking it away from me?

What if I’d been able to have the skin removal surgery in my 30,s when I lost all that weight before? How much different would my life have been if I’d had 10 more years… younger years… to better myself and get my head right? Would I have been married and had a family?

What if I’d gotten the colonoscopy that my PCP recommend in 2020 when I turned 50? Would I have had cancer at all or just polyps? Or maybe caught it so much earlier that it could have been treated and me be free of it?

I wonder about these things and so much more. It’s a lot of thoughts taking up space in my head and heart that I can’t do anything about but I can’t seem to stop doing it.

The choices I made in my life brought me to where I am right now. Broke, no company anymore, no love, few people that I truly trust to call friends, unsure about the future with or without cancer, sitting in a hospital waiting for my chemo treatment to start. 

Seems like I made some bad choices. 

I’m trying to correct that now as much as I can, but I feel like I’m selfish and lazy most days because I’m always tired and in some sort of pain, so I rarely want to do much of anything except drink and play pinball. I can’t even do that as much as I’d like to. I don’t even get to enjoy the machines in my basement much because I can’t sit down comfortably in the basement, or I’m too tired to traverse the stairs. 

I guess I don’t have much of a life, but I’d still like to keep what I have.

I am grateful for the people I do have in my life, even if I’m suspicious of their real intentions. I play the game with caution and try not to say the wrong thing or do something that will piss anyone off. 

I need these people. 

Some would say, and did say this past weekend, that I have a lot of people that care about me. The huge tournament…the ladies that made such an effort to dress up in costumes…hell, they even made me a cake with my image on it as an Elf! It really was fantastic, and I am very happy that I was able to at least be there for part of the day. And that’s just the ones that live in Marietta. My Decatur people came up and went to dinner with me, and I think would have stayed longer or done more with me if the tournament hadn’t interfered with the entire day.

I’m being stupid…why would I not just be grateful and accept that they do really like me and there is no hidden agenda? Well, one person who I haven’t seen or heard from in a long time makes me suspicious. Holly. The lady that was my champion last year, turned out to be the polar opposite of what she was presenting to me. The helpful, kind, person was really telling people in the background that I was treating her like a minion and complaining about all the things I asked her to do, which was all bullshit. 

I put my trust in her and was bitch slapped, so that reinforced any doubt I had about people’s intentions and real feelings about me. 

I still can’t include everyone in that group, but I just feel like I don’t have any real friends, as in people I can sit down and really talk to. I feel like if I express certain things it’s just going to be discussed behind my back and make me look like a horrible person, or just ungrateful. 

Whenever I’m with certain people that I REALLY want to be able to call my friends, I find myself editing my thoughts and feelings to make sure that they align with whoever I’m with. I don’t lie to them, but I also don’t share my complete feelings either. 

I don’t know…at this point in my life I really should be focusing my health and happiness in every way possible, and I know that the people closest to me do really care, I guess I just have a hard time believing it when I get wind of some conversation they had about a pinball thing that involves me in a negative way. 

I still run the Belles, and I’m still the state representative for the women’s division. It had been suggested to me, however, that it might be time to pass the torch. This is what really bothers me because pinball, and these tournaments are all I have to look forward to, and leading them makes me feel like I have a purpose. A real place in the community that’s important, and if I give that up I’ll just disappear.

Last year when I was unable to go to pinball or run anything other people took over and new folks showed up. Some of those new people stopped coming to the women’s tournaments after I took it back over. I don’t know if it’s because of me or some other reason, but I highly suspect that there were some pretty harsh words that came from Holly to whoever would listen. These new ladies, not knowing me at all, only got their information from Holly, or worse, some of them didn’t even know I existed. When I started running things again I had to explain who I was which felt really weird and awkward. It’s not that I expected anyone to be singing my praises the whole time I was gone, but it did feel like I was just erased. 

That feeling is what I am the most afraid of if I step down from any of the things I am in charge of. All the effort, all the time, money, and energy not to mention that I love it, would just be gone. Like I am already dead.

This time last year I was in the hospital, and shortly after I came home I was given an award for my commitment and love of the gaming community at the Southern Fried Game Expo. I wonder sometimes if that was only given to me because of my cancer, and if that was supposed to be my exit from it all. 

I can’t seem to just accept that people do like me and want to be my friend. Anything good that comes my way I hold in suspicion. It’s sad really. I can’t enjoy the good parts. I am trying though. I hope I can get there before I die from this awful disease. 

This disease…fuck it IS awful. I read posts from other people going through the same thing and all I can think is, “ at least you can sit in a chair and don’t have shit leaking out of your ass 24/7”

I regret getting the radiation last year. I almost didn’t. I have no idea what would have happened if I’d just done the chemo and not that as far as the actual cancer goes, but I do know that my situation would be a lot easier to deal with. My pain and difficulty with anything social is directly because of the radiation side effects. Even if I was cured of the cancer tomorrow I’m stuck with those forever and there is no possible way anyone can understand what it’s like to have to deal with this literal “shit” every day.

I got the cancer that steals your life AND your dignity.

I know I need to focus more on being grateful for what I do have but it’s so fucking hard to do that when your balled up in pain and having to attend to shit coming out of your deformed asshole. 

I will end this very depressing post with thoughts of gratitude though.

I am grateful that I am not as bad off as I was this time last year pain wise and wound wise.

I am grateful that I am able to go to pinball once or twice a week.

I am grateful for the ladies that show up to play every week, even when it seems like they are annoyed with staying past 9:00pm

I am grateful that my mom is still with me in the house even though it makes my life a little harder, it also makes it better.

I’m grateful my puppies are doing well and seem happy.

I’m grateful that the treatment I’m doing seems to be working at least partially, which I hope will extend my life a little.

I’m grateful that Anne lives in Georgia again and that I can see her more often than I used to.

I’m grateful for Jennifer and Julie for coming to see me and rekindling our long friendship that was kind of ignored for a while.

I’m grateful for Tiffany, Alex and Katie for being the real pinball friends I have up here.

I’m grateful for Meredith Morgan for being the person I can talk to about all my “shit”

I’m grateful for Meredith Pyle for steering me through my paranoia, and being able to deliver messages from others that seem to not be able to tell me in person.

I’m grateful for Gwenn coming to visit me and being so patient with me when she does.

I’m grateful for Elise for all her concern and trying to help even though she knows deep down there’s nothing she can do.

I’m grateful for Marie, Margaret and Stella for being so much help to me and mom at home.

I’m grateful for Mr. Steele, who has driven me countless times to and from chemo, as well as carted my mom around all over the place when I can’t get out of bed.

I’m grateful for the poison currently being pumped into my body which is helping me stay here a bit longer, hopefully to create more things to be grateful for.

I have a lot to be grateful for and I know it. I want to start LIVING like I know it.