Making the most of an inoperable situation.

Like any other big life event, this was mentally challenging. Coming home, not a big deal to most. After having constant 24 hour care for the last month, this was so nerve wracking. Would I be able to transition to home life? I was a nervous wreck. I consulted with ChatGPT, and it assured me these feelings were normal to have. I practiced getting in to the car from the wheelchair at the facility. No problem. These things don’t seem like much, but when you have gone from zero use of your legs, it is a huge deal. Discharge date was set for 05/26/2026. My wife worked her tail off getting the house ready for me to come home to. We ended up switching sides of the bed so it was easier for me to go right in straight shot with the walker. No tight turns or narrow paths to navigate. Now we just have to turn the mattress 180 degrees to get the proper feeling of the mattress back on either side.

I have continued my daily routine as I did in therapy. The only thing I don’t do because I don’t have the equipment are the bike exercises and a few other things. You gotta use it or you will lose it. This consists of 1,000 ankle pumps, 250 leg lifts among other things, 5 sit to stand exercises and walking with the walker. Each week I will add more paces to the walk. My legs are still not 100% but I am getting there. My first day at the new facility I could barely walk 3 paces on the parallel bars. My second day I walked twenty. Mind you, I was only at the good rehabilitation facility for 12 days.

I had to put the work in each day because I knew it was going to go by fast. I did not have a day off of therapy the entire time I was there. I needed to make the most of my time with the therapists. Three hours a day, everyday. The time was split between physical therapy and occupational therapy, an hour and a half each. Much better than the maybe, 5-10 minutes a day at the first place. This was no small task. Put the work in, make gains and get home. This was my plan and goal. Goal achieved. I pushed myself daily, more and more each day. My best walk was 70 paces. Again, this may seem like a small jaunt. I had zero use of my legs prior to. I could barely lift my right leg an inch laying down. Now I can lift it 18 inches unassisted. I’d have to use my hand to maneuver and position my right leg. I still have some right side weakness but not like before.

Will my cats welcome me back? Of course they would. I got kisses from my baby boy, Chip. Pancake acknowledged my presence in his own way lol.

Thank you to the staff at the second facility. They pushed me to my limits and I did as well. They believed in me when I doubted myself. I pushed through and accomplished my goals to get me home in a safe manner.

I’m sitting here at home, reflecting over the last week and all I can think of is you did it. Still gotta put in the daily and push.

Thank you for stopping by.
~Bruce

Boy oh boy what a day. I got up early and got ready for the day. Had breakfast and physical therapy was here at 8:30. We did some bike exercises and other things and it ended at 10am. Got some rest and had a small lunch. Pick up was at 11:30am. I was transported for my MRI appt. All good. Got an IV placed and waited for the MRI. Sat and waited to be lifted to the MRI bed. No worries there, they used a hoyer lift to move me to the bed. I still can’t stand without using a walker to stabilize me. So I am moved over to the MRI bed and we begin. Laying flat is so painful after the fractures, plus the hard plastic did not help. An hour goes by and then I am off to an X-Ray appointment. They slide me over to the next bed. This wasn’t too bad. X-Ray didn’t take long at all. Then I am lifted back to my wheelchair and I’m all done. This was about 3:15pm. Long day. I call for transport and I’m expecting a long wait, he was there quick like 15 minutes. Back to the rehabilitation facility.

I’m now sore and in pain from the MRI table/bed. I asked when my therapist was going to be there for afternoon therapy. The CNA said they mostly left for the day. I was scheduled at 2:45pm, this obviously was too late now for therapy as it was now after 4pm. My nurse came in and I asked fof some pain meds. My back was killing me. I took my meds and started to rest. No rest for the wicked, one of the occupational therapists showed up and was ready to take me for therapy. I explained to her how I was feeling and asked if there was any way to either postpone therapy for the day or just do some bed leg exercises. She said that would be fine and we just did some bed exercises. We chatted between exercises about her fondness of Costco and her love of baking sourdough bread. I told her my sister-in-law made a killer jalapeno cheddar loaf, my fav. I finished my therapy and rested.

I got impatient for results as this would be my first MRI since stopping the chemo pills. I checked my oncology app and read the report. STABLE!!!! I was ecstatic! Stable, I couldn’t believe it. I had been praying for weeks for a good result. My prayers and my family’s prayers were answered. No mutations, no growthe. Stable! Thank God. I was so happy. I texted my wife immediately. She said she was crying and ruined her makeup, haha. I texted my family with the good news as well. Wonderful!

Thanks for stopping by!
~Bruce

Here’s a frustrating tidbit. Yesterday, I told multiple nurses of my scheduled MRI and X-Ray appointments today. I also let my physical therapist know so they didn’t schedule me for therapy during the appointments. I was told transportation had been arranged as they provide transport to Dr appointments etc. The therapist said she wrote it in the chat, twice. I was told pick up would be at 8am. I got up early, got myself ready, had breakfast and waited. The time came for pick up and I waited. Some time passes, it’s now 8:15am. No pick up. I am getting nervous, I don’t like ever being late. I despise missing appointments. It’s now 8:30am, the time I am scheduled for the MRI. I’ve called to the nurses station now twice. They said transport must be running late. Excuses, excuses. Now it’s 8:45am, I call the medical center to let them know what’s going on. They put me on hold and come back and say they are fully booked and I would have to reschedule. Frustrating! I know it’s not a big deal but that’s not the point. You assured me and told me multiple times that I would be picked up at 8am. I rescheduled the appointment easily. I told the staff I was upset about this. I let my case manager know as well and asked for a print out or confirmation of the newly arranged pick up for the rescheduled appointment. One of the nurses here said he didn’t see it in the chat. Not true. The physical therapist told me today she saw it in the chat. She wasn’t even here yesterday. She saw both chat entries. Now, at least I have confirmation of my pick up printed out. It just sucks that the ball was dropped. The pt/ot had to be rearranged today. That’s not their fault. It’s just annoying. Thanks for letting me vent.

~Bruce

Breakfast was delicious, biscuits and gravy. My favorite. I met with a psychologist. We chatted for a few. No need to continue with him. I missed another virtual appointment with the doc who prescribes my blood thinner. Dang it! Psych ran over that time. Then my physical therapist came in and did an assessment. The hard work was about to begin. She placed my back brace for me, I strapped up and started in. First thing was standing. My legs were weak as could be. I pushed through and locked my knees. I was upright and standing with the walker. I transitioned and pivoted to the wheelchair. We toured the floor on the way to the gym. I got to see where the hard work would happen. We talked a bit about the scope of therapy I’d be receiving. Next, we made our way back to the room. I did some more standing and then did a transition from the wheelchair back to the bed. This took about an hour or so. I had about an hour between appointments and then OT came in. I told her let’s attack this head on and get some work in. She said she wished some of her patients had my drive to do the hard stuff. I said I have a goal, to get home to my family and my kitties. She helped me stand with minimal assistance using the bed rails to push up and grab the walker. Stand for a moment and ease into the wheelchair. I was doing it. Let’s go! We then proceed to the gym. Today’s therapy was with parallel bars. She wheeled me up on the device and we got started. She placed three pads on the ground in a triangle formation. Right, center and left. When she would call out the color, I’d put the corresponding foot on the pad. Center was my choice. I have right side weakness, my tumor is on the left side of my brain stem so it controls the opposite side. This was so difficult. It may sound easy but when you lose function and control it was one of the most difficult things you could imagine. I was pushing through it though. I am a fighter and I have a goal to not be bed bound or stuck in a place. I want to regain my strength. I’ve got to put in the work and that’s exactly what I did. We did that twice. She said we’d do more each day. Then she placed the pads in a row and I would then walk to each one. Don’t shuffle, take actual steps. I said ok, let’s go. I stand back up with minimal assistance and proceed. I did it! Again, you take minor things like this for granted when you can do it on your own. When we got back to the room she told me she was proud of my work done and how I well I did. I broke down and cried. It was hard but they were happy tears. I did it! She asked if I wanted to sit in the chair and look out the window or watch tv and I said don’t think less of me but that really kicked my butt, I kinda want to rest in the bed. She understood completely. We then lined up the wheelchair to do another transition from chair to bed. The hard work was over. I had lunch and rested. Then it was time for a speech therapist to come in and do an assesment. This consisted of a cognitive test, and memory test as well as speaking a few things. She said I was fine with this and wouldn’t need her type of therapy so her time would be split with PT/OT. So that would be an hour and a half with each on 5 days a week. Strong contrast between this place and the dump. I completed my first day of therapy. It was difficult but I powered through it. Mindset is key and the drive to push myself is there. Let’s see what tomorrow will bring. Oh and lunch was parmesan baked white fish. I don’t eat fish. I told myself since I am doing things out of the norm, try it. I ate it and enjoyed it. I ate fish y’all! lol

Thanks for stopping by!
~Bruce

A couple weeks ago I was experiencing increased weakness in my legs. Is this general weakness or progression of tumor? I shook it off and kept on. It got worse as the days went on. I had some upper back pain too, lovely. One day I was getting ready and everything was fine. Got my morning bathing routine done and off to watch some news and shows, have breakfast etc. Mom came by and around noon I had to use the restroom. Made my way there and went. On the way back it was increasingly more difficult. I could feel the weakness creeping up. So nervous navigating back to the couch. Then around 3pm I had to go again. I never used the portable potty chair. I did this time. I knew I couldn’t make it to the bathroom, which isn’t far from where I was. I went and could not get up. Legs were checked out. No strength period. I was stuck. I called my father-in-law in to help me. He’s not a weak man. With my mom on my right and FIL on my left, couldn’t get me up. Great. It was scary. I knew I had to do something. Increased back pain, stuck on a potty chair, I called 911. They were there in minutes, I was still stuck. A fire truck and ambulance came. A whole team of big burly men came in. Three of them hoisted me up to stand and navigate back to the couch. I dropped like a sack of rocks. Legs were gone. They took me to a local hospital where I stayed til Friday, this was Monday afternoon. I called my wife and told her to head to the hospital. She was freaking out.

The hospital pumped me up full of pain meds. Lots of constipation would come later. More on this further down. I had an MRI of my spine and it showed more compression fractures in the thorasic spine this time, T7-12 as well as L3, 4, and 5 but too soon for surgical intervention.

Fast forward to Friday and a hospital worker came in to tell me there was nothing more the hospital could do and she was referring me out to a rehabilitation facility. She gave me a list of places that accepted my insurance. Four of them were of the same name just different locations. So I called my wife and we picked one close to her work but far from home. She works an hour and a half away from home. Not ideal but we will make it work. To make matters worse, the lady was pushing me to pick so we only had like what seemed to be about 15 minutes to choose a facility. We pick one. They arrange transport and off we go. When I arrived, there was a noticeable fecal odor. My wife smelled urine when she walked in. Awful. This place was a dump. Drab, dreary and dark. The only thing this place had going for it was a few nice staff members. It was more of an assisted living facility/nursing home than a rehab facility. Little did I know the care and pt/ot I would receive would be less than hoped for. Each weekday I would receive 5-10 minutes of pt/ot each. How can you rehabilitate and expect results? I did more on my own with the little leg kicks and movements in bed than I did with the “therapists.” My wife was not happy when she saw the place. The food was terrible, one CNA even said she wouldn’t feed it to her dog.

The Roommate. I never had to share a room in a “medical” setting before. This guy was a piece of work. I’m basically bedridden at this point. I can’t get up. Legs are checked out. He’d go to the bathroom which was right in front of my bed with the door wide open. Finally, I said Hey man, shut the door, I don’t want to see you take a dump. He was a disgusting person. One night, he came over and shut off what was similar to a cheap hotel air conditioner. Just walked over and shut it completely. Another night he came into my space and went to reach for something on my tray table. I said “hey! get out of my space!” What the heck, guy?! I reported him and told the administrator there were multiple patient conduct infractions with him. I requested to be removed from the situation or him to be. They moved me to a different room. The new roommate had a tracheotomy. Multiple nurses said he was brain dead. The only bad thing about this new room was the sound of the machines. It became like a white noise. I didn’t mind it. Anything was better than being in the room with someone going to rifle through your things while you are asleep.

So now I am here, in a facility getting virtually zero rehab to get back some strength. I was so embarassed by this place I told my in-laws not to come visit. If it wasn’t for my wife and mother I wouldn’t have had a decent meal over the last few days. Thank you ladies, I really appreciate it. One day shy of two weeks go by and I am happy to report I am in an actual rehabilitation facility. Beit my first day, it’s already a bright beginning. We found a place. A beautiful new facility about a year old. The website says intensive pt/ot 3hrs a day, 5 days a week. I’ve got work to do but I am hopeful it will get me to where I need to be. It took a bit and my wife was getting discouraged. I told her be patient and positive we will get it done. I was asked by the awful place why I wanted to transfer. To save face and be cordial, I told them it was much closer to home and also much closer for my mother to travel. These were not untruths. The bad place dragged their feet sending over the referral to the new spot. I was approved by the M.D. here and just needed insurance approval. Finally, they sent everything over. A day later insurance approved the transfer. I texted with my contact at the new place and transportation was arranged. I’ve been here 6 hours now and can confirm night and day doesn’t even describe the difference in the two facilities. Such a wonderful experience and the real work hasn’t even begun.

I’m settling in today and waiting for my wife to get here from work. She’s going to be surprised at the difference. I’m excited for her to see how different it really is here. So nice. The hard part starts tomorrow. Wish me luck!

~ Thanks for stopping by!
Bruce

Today marks one year since my brain cancer diagnosis. I’ve had numerous rounds of chemotherapy. I did 30 cycles of radiation therapy. I’ve had a brain biopsy, which they voted against at first and then a tumor board approved. I’ve gone from walking with a cane to walking with a walker. It’s been very difficult over the past year with the physical decline. I’ve had two pulmonary embolisms. I’ve had two spinal compression fractures. These are from long term steroid use. Two Kyphoplasty procedures to fuse the fractures back together. I’ve tried lowering my steroids. I started on 12mg a day and am down to 5mg. When I try to go lower the vertigo worsens. I’ve added calcium and vitamin d to my daily meds. I’m staying positive throughout this entire thing.

My wife has been by my side the entire time. I wouldn’t be here today without her. I’m so thankful for her.

Lots of changes physically and mentally. Emotionally I am doing good. There are good days and only a couple of bad ones. The

most difficult part of my day is getting up and out of bed and getting back to bed.

My mother comes up to sit with me some days of the week and help me out. I’m thankful for her as well. My mother in law helps me on the other days.

My cat Chip watches over me and stays with me all day til my wife gets home then it’s all about his mommy.

I wouldn’t be here without the staff at Moffitt and my wife and family. It’s been a rough go but I’m still here. I’m still fighting. I’m still positive.

There’s been no spread of the cancer and I’ve had 3 stable mri’s. I’m no longer on chemo and my next mri is in May.

After last week’s MRI, I had a telemedicine appointment with my medical oncologist. She asked if I was okay going off the chemo. You betcha I am. Three stable MRIs and 6 months of chemo showed no growth or changes to Rudy, my tumor. I’ll repeat MRIs every two to three months for check-ups.

Good news, but Rudy is still looming there in the shadows. I’m not in remission or cancer-free, but I am stable. The chemo takes so much out of you. The worst for me was that the after-effects were lasting longer, like 2 weeks. The fatigue and constipation were the worst.

I was cleaning up a small mess in the bathroom on Friday and wrenched my back again. It’s muscular pain, and it hurts like heck. I got scolded by my wife, saying I should have waited for her to clean up. She already does so much for me that I didn’t want to add to her plate. I should have listened; the pain is terrible but only when up and moving around. Nothing like the fractures, thankfully. Good days and bad.

Thank you for stopping by!
~Bruce

Tuesday was an early appointment day. Had to be there for the next brain MRI at 7:30 am. Traffic was insane at that time, as the MRI facility is near a college campus. We made it just a few minutes behind. We got checked in and called back. I chose to wear clothes I hopefully wouldn’t have to change out of. Luckily, my choice was correct. One facility made me change into a hospital gown on the last one. I had to have my wife help me change in a small room. Not so easy from being in the wheelchair when going out. This facility allowed it. Thank goodness.

So the MRI was done in about 30 minutes, and the techs helped me up. I should have asked them to go easy, as I am still healing from the Kyphoplasty. The log roll method is preferred. The pain was brutal as they helped me sit up. No BLTs—bending, lifting, twisting. I sat up and put my back brace back on. The brace helps with the pressure on my spine. Strapped up and ready to go.

My patient portal sends reports before I see the ordering physician. So I read it. Scanxiety—remember that term? The MRI report was there! No growth, no changes, no angiogenesis, no hydrocephalus. All STABLE! Another stable MRI! I’ll take it! Of course, we would like to see Rudy shrinking, but stable is good—great even. I haven’t been on chemo since December. My last dose was the 11th of December. Since the fractures, my oncologist hasn’t ordered any chemo. One thing at a time to focus on.

I have a Zoom appointment with Dr. P. tomorrow, Thursday at 3 pm, to go over the results. I’m not looking forward to more chemo. It makes me so constipated and weak. I’m already in a weakened state. It’s been nice not having it.

I had some OT today. I have not been able to do the PT as of late with the fractures and healing from that. My PT guy is very understanding of this. OT showed me some seated resistance exercises just using my muscles and breathing. It actually makes me sweat. I accidentally sat a little too hard and fast after one standing exercise. He wasn’t too happy, and I assured him this wasn’t how I normally sit down. My legs got weak. He showed me some lift chairs, and I told him we couldn’t do those at this time with our kitties.

My youngest kitty, Chip, has been frequently going behind the reclining sofa for what reason I don’t know. Ever since the last hospital stay, Chip has been with me all day and night. He must sense something. I love that he has been with me all day and night in here, but it would be nice to see him. He does come out when a visitor comes by or the OT guy. Today, Chip came out from behind the sofa and watched as my OT guy showed me the exercises. When he was leaving, he went to pet Chip, and he rolled over, exposing his belly. Complete trust. Cats will not give their bellies to just anyone. They read the person and choose whether or not to expose themselves in that manner. The belly is a very sensitive and vulnerable area to them. I told the OT guy this was huge for them, and Chip trusts him. Then Chip let him pet the belly. What a good boy. I was so proud of him lol. Any way, that’s today’s update.

Thank you for stopping by!
~Bruce

I went for X-rays to check for another fracture. Luckily, there were no new fractures. It was all muscular pain/spasms.

I have an MRI of my brain scheduled for Tuesday. I have not been on chemo since 12/11. No chemo since the surgeries and hospital stays. I will probably get started back on it soon. Hopefully, the MRI will be stable or show some more shrinkage of the tumor. Not sure what next week will bring. I also have an internal medicine appointment with the doctor who prescribed the blood thinner for the embolisms and DVT in my leg. I wear my brace daily whenever I am up and moving around until I go to bed. When I am seated, I am allowed to loosen it.

Keep your prayers and positive thoughts coming, please. I could use them.

Thank you for stopping by.
~Bruce

This weekend, my back has progressively gotten more painful each day. I hope I don’t need another Kyphoplasty. I messaged my neurosurgeon’s office Sunday night. They messaged me back this morning. I let them know about the increasing pain. It’s not where I have had the other two procedures; it’s just above the area. I’m hoping it’s just muscular pain, but with my luck lately, who knows?

My PT messaged me to schedule. It’s not wise at the moment to continue PT until we see what the X-rays show. I’m scheduled for two on Thursday.

I had a Zoom call with my PCP today. She said I was akin to a superhero with everything I’m going through and how I am handling it all: multiple back procedures, multiple procedures, pulmonary embolisms, and DVT in my leg. 2026 has been a lot to deal with. Keep your head up; power through it. That’s been a recurrent theme over the past year. She recommended I start on a Vitamin D regimen to my daily pill intake to strengthen my bones. I’ll get right on that. I don’t want any more fractures; it’s not cute, as they say.

The pain. The pain. The pain. As long as I am seated or lying down or reclined in a certain position, the pain level is low—like maybe a 3-4. If I try to stand or put any kind of pressure on my spine, it jumps to like a 9-10 on the pain scale. It’s awful. I use my back brace all day, from the time I get up till bedtime. When I am seated, I can loosen the brace.

Today my mom came up to sit with me. It gets so lonely. One thing they don’t tell you about is the loneliness. I keep my outlook positive, but it can be difficult when you are going through this. I miss my daily activities.

We meal-prepped some American Goulash last night for the week’s dinners. I chopped some onion and tomato. That made me feel good. Being able to help my wife meal prep keeps my mind going. I chatted with my brother-in-law for a bit today. He was curious about how I was doing. His koi fish pond froze over in New York. He has things to keep it warm for them, but the surface froze over.

Thanks for stopping by!
~Bruce