New Life and New Body with issues...

[Mopar1973Man]

Well, I'm completed with chemo and all surgeries... This all comes at a cost to me of 8 months of cancer treatment has weakened me quite a bit. I'm slowly working with my body giving myself a chance of pushing a bit and working muscles that haven't worked in 8 months. I'm off all my Big Pharma drugs and my blood pressure is back to normal. No pain meds or anything. I'm back to using my herbs are supplements and managed to keep normal blood pressure now. I'm now without a bladder or prostate I will never have bladder cancer again. 

 

This is a weird one I know people have phantom limb and experience pain and a sense of feeling. How about having a phantom moment thinking I have to urinate? Yup, I had a moment in the morning thinking I needed to pee and get to the bathroom looking down at the bag. Face palm moment knowing that my body doesn't work like that anymore. Yeah, I've had 5 different times feeling like I had to take a leak but nothing there. Try calling to open the bladder and urinate. I more or less get a message back "Printer not available" 

 

I've had one ER visit having a bleed on my stoma and wound up spending the day in the ER. It was my blood thinners and of course, my body just wouldn't heal up with anti-clotting pills and blood thinners. That was a bit scary to wake up and find the tubing full of bloody urine and about a full liter overnight. By the time I was done with the ER my backup mount started to fail because of the wipes they used to clean me up so I had my shirt plugging the hole and drove home to change my mount and bag again. Argh!  Be aware most hospitals do NOT supply any ostomy supplies because of how rare it is to see one of us.

 

I've been learning how to live again. For a while, it was here at home sore from the pain I could feel and then my blood pressure would reflect the other pains I couldn't feel. It's not too bad being the way I am and I can see how people get along with life but I had to build my confidence in handling my bag changes and doing the mounts quickly. Now I'm showering without any appliance on my body just me and my little red stoma poking out on my belly. I shower normally and wash all the sealants off around my stoma. Yup, I'm currently fighting a minor yeast infection around my stoma. The bad part is having an itch under the base mount. Oh, talk about crazy trying to rub or scratch close to the base to stop the itch. 

 

As for my mental state, I'm still a crazy Cummins owner. Seriously, my makeup work and cosplay are getting better as time goes on. It has been a wild ride working with many medical people and at the same time dealing with all the depression that you could be faced with and finding a way to always pull it together and do something wild and make people laugh and smile at what I do. For a very short time, I'm capable of enjoying life with all the medical devices I've had on my body between the pair of bags hooked to my kidneys and now the ostomy and stoma on my body. 

 

 

Something else to throw in there... I met a gal in one of my appointments. On my last ostomy appointment, I was 2 hours early because of worry about road construction but made it early. I was waiting in the hallway by the elevators and started talking to older gal that was waiting for her appointment you have to remember I'm in full makeup and with my spiked collar and concert shirt on. Suzanna came off the elevator and points at me and said, "I remember you from the last visit!". I was very curious what she had to say. Suzanna was the first of anyone to ask me for my phone number because she was truly interested in me for my wild nature and makeup work. We talk every evening and phone calls last for hours talking about all kinds of topics and being very open with each other. We both come from abusive past so neither one of us wants to hurt the other. The crazy part is I wouldn't have met her unless I had my ostomy surgery and went to my appointments in full dress mode with makeup. 

 

So my limitation now is I'm a high hernia risk for life so I cannot lift anything heavy at this point because my belly has a lot of scars where the doctor was pulling my bladder and prostate out then a larger scar under my belly button where he reached in a cut about 9 inches of small intestine where my small and large intestine met. This is brought forward to hook both my kidneys to the right side of my belly. All this healed up well and no issues. Good news! 

 

I'M CANCER FREE !!!!

Now keep in mind I just cheated death TWICE. I will survive this but I'm pretty sure it took a bit out of my lifespan. So I'll admit my life has been forever changed by the two runs of cancer. Its very frustrating to attempt to do some of my old tasks and have issues with the ostomy being in my way or limiting what I can do because currently I have to still be careful of my kidney till I hear bac on my labs if my kidney are improving. 

 

Edited August 14 by Mopar1973Man

[Mopar1973Man]

I've got a story for all of you to hear. I've got a trick I can only do once in my life and can't do it again. Then I can claim I'm the only male that has managed to do this trick. Back up the train to about the 3rd day after surgery, I was starting to heal up and walk the hospital floor and doing all the little things like PT and OT. My doctor shows up and I'm in the middle of doing my makeup that morning. I asked my doctor to see about removing the tubes from my kidneys. I was tired of sleeping on Lego bricks (the connector). My PT doctor came in and asked me if I had stairs in my house I said yes. We took a walk to the staircase and up and down I went. No problems. The PT doctor saw me in my different wigs and makeup already too. He suggested to switch over to my black and blue wig and do my black and blue makeup. I quickly tweak everything sitting on the edge of the bed. PT doctor sent for my transport downstairs so I could get my tubes pulled out of my kidneys. I got down there the surgeons loved the makeup and the style heck of a conversation piece. My surgeon asked what I wanted to have for anesthetic for the removal of my tubes. I told him I was going to "Raw Dog" them out, meaning no pain meds or anesthetic. The surgeon started on my left side and cut the stitches holding my tubing in place in my back. In one pull it came out quickly and I asked did you get it out and he showed it to me. Never felt a thing, remember no drugs were used. Surgeon move to the right side and stops notifying me that he's got to contact my other surgeon about my stent on the right side. Remember I'm laying on my stoma in the front of my belly as I'm belly down. After about 15 minutes the surgeon returns says it's fine and pulls my right side out. I felt a warm and wet feeling and wasn't sure if I just felt blood. I asked the surgeon, "What was that doc was that blood?" The surgeon replies, "Nope. You just urinated out your back on the right side!" Yup, I was able to urinate out my back because laying on my stoma allowed my kidney to build up a bit of pressure and as the tubing came out the urine just followed the tunnels in my back to the surface. 

 

So... I can say I'm one of the few people if not the only person that can say he could pee out his back and only do it once in my life.  

[Mopar1973Man]

Now to show you some of my daily life. I'm still limited in what I can do. I had Mark grab my arc welder and put it on the ground near my lawn mower. I broke a steel brace for the deck. Now I lay on the ground and managed to weld the brace back up. Yeah, don't judge it was a dirty bird chit weld. Then Mark suggested pulling the 3 blades and sharpening them all. Then by the time I got to mowing. I was noticing my belly getting wet. Sweating? Wet Grass? Nope, I blew my gasket a day early and weeping out my water pump weep hole which is my belly button now.  I wasn't leaking bad but I'll hold up for a bit longer if I'm careful. So here I am mowing the lawn and blotting my belly button with my shirt to finish up so I could change my wafer or as I call it my "mount" or "gasket". 

 

Now this is why I pushed because I was covered in grass clippings and dirt so now I can wash up once and get my hands clean and around my belly. I don't want infections from being dirty or introducing anything to my ostomy by accident. I always wipe down my bathroom counter with a wash rag with a splash of rubbing alcohol. I know my work surface is clean. Now I'm pulling my next wafer out and have to measure a 1-1/8" hole and mark it with a black sharpie. Now with my small scissors and cut just barely on the outside of the marker line. Now peel the backing off. Get my wax ring and place it centered over the wafer hole. Now using my clean fingers mold the wax to the opening of the hole cut in the wafer. Now we put that all aside for the new wafer and sealant. Now get the solvent to release my adhesive on my old wafer pour any liquid on the top and wipe down the right side knowing the left side is blown out. This time it was a single try pulling off the entire wafer in a single pull carefully over the top of my stoma. I took my second pack of solvent and washed all the old sealant off my belly around my stoma. I've got to be super careful the stoma is very delicate and just barely touching the stoma with the solvent wipe will leech just a little bit of blood this is normal and just be slow and careful. Then grab a second washcloth and wash my belly and shave any belly hair around my stoma. Now keep in mind the entire time my bag and wafer are not on me I'm watching my stoma continue leaking urine as my kidneys are still doing their job. This whole process is done over the bathroom sink. Once I'm all clean I will grab my hair dryer and low heat setting holding away from my belly I attempt to dry all my skin and blot up any urine. When I feel I can do the mounting of the wafer it's a quick line up in the mirror so my stoma is centered in the hole. As it is placed the top and bottom are pulled taunt and applied to my skin. For the wings on the left and right of the wafer, I peel the backing and do the same. Now flat palm push fairly firmly and push the wafer against my belly to make the wax ring ooze past my wafer edge and my stoma so my skin is protected from the urine which will give me like a diaper rash. Now take my bag and snap it onto my wafer or mount. The sad part tomorrow is change day and it failed a day early so now I need to make this bag go 5 days to get back to schedule (Monday & Thursday) for my change days.

 

This is all done in about 10 to 15 minutes now. This is why I'm not far from home or I pack my backpack with at least 2 changes of ostomy bags. Like Mark, he's getting used to me cussing and saying "I blew a head gasket". This is now my life I'm getting used to the idea of this little bag hanging on my right side of my belly button barely. I'm constantly patting the right side of my belly checking my bag fill level. When I'm at home I tend to run around with my bag hanging on my belly. Not tucked into my pants since it tends to limit the capacity of my bag since the waist of my pants or shorts will compress on my bag. 

 

Now I got to find some lunch today and eat. Then I gotta hitch up the RV and turn it around to dump my holding tanks and do some cleanup up I wanna go camping! This is the tough part of this new life and new body. I'm so tired of keeping an eye on my body functions some days I need to just throw caution into the wind and live life a bit more free for a few days without medical measurements and worry about my ostomy all the time. This is the other part of healing is getting comfortable with what I have going on.

[IBMobile]

Mike, I think I found your sister.

 

[Mopar1973Man]

[Mopar1973Man]

So my trips back and forth to medical appointments are coming to a end. I'm attempting to get my disability fired up but I've got to play ball with all the different agencies and play by their rules. Social Security limits me on the amount of hours I'm allowed to work my website currently. Then Welfare limits me on how much income I'm allowed to have as well. 

 

As for information, I'm still helping guys with different truck issues. I have to do it where I'm not in public view sadly. 

 

Like I got to run and get a plumbing part today. I'm trying to build my strength up and return to my old self. Sadly I'm still very weak and have issues just holding my 1/2" impact gun in my hand it too heavy to do much work with it yet. My belly I've lost most of my muscles through my abdomen and gained more fat more so. Ugh! Yeah I still weigh the same old 235 pounds but my body fat content is higher. Ugh.

 

I took a break and went camping for 3 days at Smokey Boulder Rd. Yeah, it was great, the simple task of hitching the RV will wear me down and get me huffing and puffing to catch my breathe at times. Not having the endurance I used to have... But I didn't get here overnight it was 8 months of cancer treatments and surgeries that did this and will take me time to recover my strength. 

 

I'm working at smaller and lighter jobs like picking up the loose stones in the yard and cleaning up the yard carefully and slowly. I'm a high-risk hernia patient now. I'm no longer capable of heavy lifting of anything now. Like doing a transmission or clutch job is out of my range of work forever sadly. My endurance last about 4 to 5 hours on average before I'm too tired to work anymore. I still have to monitor my blood pressure since I can't feel pain internally in my back or around my kidneys. When my blood pressure rises I've got to go lay down and let my pain levels back down to get my blood pressure back to normal realm. 

 

You have no idea how much not being able to handle my business and work on truck affects me mentally. It absolutely sucks and very depressing. Then not looking forward to more medical visits all the time you are doing this. 3.5 hour drive to Boise to be poked at by a doctor for one reason or another. Running across town to handle Norco Inc for my Ostomy supplies I'll be using forever. How about sitting on my riding lawn mower (zero turn) and have your ostomy bag blow out and soak you in your own urine? Yup this happened twice now. I've even have to be careful standing up if my bag is nearing full. I can catch it between my thigh and squeeze the bag and blow it out over my lap. I've done that too. I'm still learning and still trying to get all this figured out. 

 

My fun stuff... I still enjoying making smiles as I travel back and forth to places. 

 

 

 

Edited August 27 by Mopar1973Man

[Mopar1973Man]

Well I know I need to keep you all updated and what's going on. Life continues for me. I'm starting to learn how to live with my new body. Yeah it going to take a bit of time to learn all the little things and the mistakes I've made so far. I've had some of my mounting wafers fail in weird times and start leaking. I'm getting better at swapping out the old wafer and bag fairly quick. My skin is starting to toughen up to the adhesives and my rash is getting better with time. Still can be a rather delicate process of even keeping me drained out and moving. I tend to cheat as much as possible like being I'm down at the GF place in Nampa right now I'll leave my bag hang out under my shirt which gives my full capacity of the bag. If I tuck it in then I loose part of my capacity and if I wear a seat belt it will possibly blow the bag out or my wafer, 

 

I wound up coming down here to get my ostomy supplies sorted out with Norco so I get my full monthly allotment of wafers, bags, sealant, solvent and other supplies. TNorco kept splitting my order and half was in the beginning of the month and then the rest would come at the end of the month late. Yeah its rather tough to mount a new wafer without the sealant ring, the wafer would leak pretty quickly. 

 

There is other things like me being out and start sweating which could make the sealant ring fail in a short time. I have to keep my belly dry and try not to sweat much if possible other than that I might be changing wafer and bag pretty quickly. 

 

Next step is to visit the Social Security office and and deal with paperwork as well. 

 

Yes my wild side continues. 

Edited September 13 by Mopar1973Man

[Mopar1973Man]

I'm still alive and still battling away at figuring out my new life with an ostomy bag. I even tried to do some shop work yesterday helping Mark a bit but man after being laid up for over 8 months with surgeries and chemo treatments I'm still fragile and have issues with holding even small amounts of weight for any length of time. I am still having issues with my kidneys and need to work at getting my kidney function back to the good realm. Part of my kidney issues could be because of the head cold I had and then I had an issue with food that made me sick. That may be fouling my labs. We will see soon. 

 

Now my race is on to figure out finding enough help and support to get firewood onto the property. Typically I need about 9 to 12 cords to keep the property warm and not freezing. Being my income is extremely limited I can't afford to heat with an electric heat pump for this winter. This is a problem I'll have to visit soon. Beast is going to need a set of wheel joints in the front axle I "think" I can get the job done with a bit of help from friends. 

 

Holloween is coming soon so I've been working on my look. This is the way I went to McCall hospital for my labs and handled my Norco supplies for my ostomy. Still is all I get people that come up to me and give me huge hugs and give me great comments. 

Edited September 19 by Mopar1973Man

[AD25]

I’ve got a buddy living off grid in Michigan with some similar circumstances. My friend and I are planning to get some wood for him soon too. It seems like you have a good community of friends close to you. I’m glad you’re making the most of things and keeping busy. 

[Mopar1973Man]

6 hours ago, AD25 said:

I’ve got a buddy living off grid in Michigan with some similar circumstances. My friend and I are planning to get some wood for him soon too. It seems like you have a good community of friends close to you. I’m glad you’re making the most of things and keeping busy. 

 

Yesterday was a run to Lewiston and get supplies for the house. For me it's very draining to walk all over Walmart then go to Home Depot and walk all over too.

 

Strange enough a nice gent wanted a photo of me. After the photo the fine gent prayed over both Suzanna and myself for help from the Good Lord to aid both of us on our road to recovery.

 

Then headed over to WinCo for a few food items. Yeah I'm wore out energy wise today but gain ground. Health wise my blood pressure is in check and doing good just out of shape. Even my weight is down 5 pounds and doing better.

Edited September 23 by Mopar1973Man

[Mopar1973Man]

Did a bit of truck driving and got a friend to help get firewood loaded. 

 

 

Yeah Beast is back in action just myself I cannot lift anything heavy yet. I can do light function ls like fueling saws, sharpen chains, etc. Again I don't have the strength to lift nor do I want a hernia from lifting.

[Doubletrouble]

 Is that fresh cut timber or dead fall? Looks pretty green in the pic.

 I need to get out and do the same soon.

[Mopar1973Man]

1 hour ago, Doubletrouble said:

 Is that fresh cut timber or dead fall? Looks pretty green in the pic.

 I need to get out and do the same soon.

Storm fell stuff. Laying over roads.

[Mopar1973Man]

https://www.tiktok.com/t/ZTFyBMhTs/

 

Here you go gang.

[Mopar1973Man]

 

I'm still here. I'm still waking up every morning ready to battle each day. Even though my body is not quite ready for the world of work but I'm trying to figure out how to work with my new body. I'm thankful I've got a few good friends that advocate for me and helped out. I need to call out Mark Hall thank you for being a close friend and helping out get my firewood for the winter. Then Dan Catherman for bringing his Datsun pickup with his fishing pole setup that loaded all the logs on my trailer. Then Einer for helping up in going out and doing the heavy work getting the firewood loaded. 

 

I'm even making attempts to see how much I can do. I had the driver's wheel joint fail last spring. I managed to change it out but took two days getting it done and still not quite right. The wheel joint is fine but my slide pins on the calipers need replacing and the kits were missing the rubber boots. 

 

 

Now to add a bit of good news. I had to endure hell to get to heaven. What do I mean by this. My hell was handling my mother's dialysis, my mother's death @MoparMom, 3 bad relationships. Then hit with bladder cancer both times on 2018 and 2023 Christmas. Then deal with 4 months of chemo. Then a 7-hour surgery to modify my body to no longer have a prostate or bladder which are gone! Now on my trip to Portico West medical building, I ran into Suzanna Lopez and had a few words and got called into my appointment. Now during my appointment, I rescheduled for 2 weeks not the 4 weeks that the doctor wanted. This lined me up to see Suzanna a second time and she came off the elevator and said "I remember you from the last time!" yes this was true. I was decked out in my Black and blue hair and makeup. She got in and sat down and the first thing she asked was for my phone number. Crazy fact Suzanna is the first woman to walk up to me in 53 years to ask me for my phone number. I asked why she was impressed with my makeup and appearance as well as some of my story about my cancer and taking care of my mother.  

 

Suzanna has more or less just stayed with me. She is attempting even right now to sort through all the Social Security documents and getting information dealt with. She has been there for all my medical appointments too. We have already been together already 2 months and have a difficult time when we are separated for a length of time. Suzanna issues are that she was injured in an accident that broke her left ankle and then had issues for most of her life. Now she had her ankle fused and now we are healing together attempting to support each other to work out and get back into shape. 

 

So there you go gang a tidbit of good news. I'm trying to get over the Social Security hurdles and she is being a huge help.

[Mopar1973Man]

https://www.tiktok.com/t/ZTFuhQynP/

 

Another run out to go shopping at Walmart and Winco. Suzanna and ended up skipping Walmart being ive gotta go back to Boise this week for medical with Suzanna. This time I did monochromemakeup and hair and even older folk would smile at me. Still enjoying mymakeup artistry and being out in public.

 

 

This gal walked up to me and commented on my looks Suzanna got her to pose for a photo to add to tiktok. Sadly if you look on the left side of my belly you can see my ostomy starting to swell. Getting time to drain the bag.

 

Edited Monday at 02:12 AM by Mopar1973Man