Making the most of an inoperable situation.

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

This year has been a whirlwind, and it’s only January. I spent 5 days in the hospital again. This time was for the last Kyphoplasty.

I had shortness of breath on this last visit. I could barely go 5-10 paces without nearly hyperventilating. It was so difficult. It would take me 15-20 minutes to catch my breath. A surgical nurse saw this and fought for me to have some chest CT/X-rays. They saw two pulmonary embolisms in my lungs. They were massive and scary. They also found a clot in my left leg. I’ve been put on blood thinners. They removed the embolisms through my groin. I’m so thankful this nurse stood her ground and didn’t let it go. This could have been the end of me if not treated and removed.

I was in a PCU, Patient Care Unit. They said it was like a step down from ICU, same floor, just slightly less monitoring. I was there a couple of days. Then they moved me to a regular room. I went in on a Wednesday for the 2nd kyphoplasty. I was discharged the following Monday. My feet were so swollen I could not get my slip-on shoes on. I went home in the grippy socks. The foot swelling has gone down.

Being on the blood thinner, Eloquis, I bruise so easily. I take it twice a day. It’s wild seeing it. I have to be super careful. My wife has been by my side each day taking care of me. While she’s working, my mother has come up to stay with me. I was a fall risk and an injury risk in the hospital. I still get nervous walking to the bathroom. I am using the walker as before.

I’ve taken a step back at work and released the reins a bit. Not my choosing, but it’s better for me to focus on my health at this time. I’m thankful I can still work remotely. I’m thankful I still am employed.

Below are the embolisms they removed. My O2 sats were down to 82. Now they’re back to normal at 95-99.

I had some super light Physical Therapy yesterday. Today my back is sore but not like when I fractured the two vertabrae. It feels more like muscular pain. I can get up and down without assistance. When I had the fractures that was a no go. Next week is filled with appointments. I’m not really looking forward to it but we will push through. Please keep your prayers and positive vibes flowing, I could really use them.

Last time I checked in, I had just had a Kyphoplasty. It seemed to have healed well. I went for a post-surgery X-ray today. It showed another fracture, but this time it was L1. The first Kyphoplasty looks good according to the neuro team. The past couple of days, I have had some pain above the L2 area. It was difficult getting in and out of bed. Pain is returning. Not pleasant.

Tomorrow is Friday; I have blood work and another MRI to get a better picture of what is going on before the next surgery next week. I messaged my oncology team to see about canceling next week’s blood work since they could see it from tomorrow’s blood work. They told me yes and to hold off on chemo for the next couple of weeks since I’m having another surgery. I’m feeling frustrated, annoyed, and upset. I hope this isn’t an ongoing issue I will keep having to have surgeries. The nurse practitioner at the neurosurgeon’s office said it should not be this way going forward. It happens, but it’s rare. Lucky me.

Thanks for stopping by!
~Bruce

The past few weeks have been very trying physically. I started noticing some tightness in my back. This lasted about 10-12 days and got progressively worse as the days went on. I started to have lots of pain standing. Sitting was no joke either. Getting out of bed was difficult. I had some leftover oxcodone 5mg from the biopsy in April. I rationed them out to once per day in the morning to get me through. They did nothing to relieve the pain. I was eating acetaminophen like candy. I had to have my wife help me out of bed, on and off the toilet, help with bathing, help with everything. Finally on Christmas Eve, I told my wife I need to go to the ER and we should call 911. The ambulance came and whisked me away to a local hospital. They gave me morphine for the pain and fentanyl. The ER doc ordered a CT scan of my spine. Turns out, I had a 30% burst compression fracture of my L2 spine. I spent Christmas Eve, Christmas Day and the day after in the hospital. I went home that Friday night, still with lots of pain.

I had a neuro surgical consult that Monday with a surgeon. He suggested I have a Kyphoplasty. This procedure takes about an hour. They make a small incision on my back, inject bone cement into the affected vertabrae. This is supposed to give immediate relief from pain and pressure on the spine. At first I was thinking no way, no how. The surgeon gave a look like why wouldn’t you want this. I agreed and we got scheduled two days later, New Years Eve. The surgery went well. I had immediate relief from the pain and pressure on my spine. I’m getting around the house much better than before. I still am dependent on the walker. I have a back brace from the hospital. The healing time is about 3-6 months. In just 3 days, I can move much more easily. I wear my back brace all day. I take it off at bedtime. The brace helps a lot too. It keeps my spine straight. Since the procedure, I haven’t had to have too much help getting in and out of bed, getting up off the couch, getting on and off the toilet. I am still very nervous about things like this but I’m pushing myself to be more independent. I still ask for help when needed but it’s much less than before.

I am so appreciative of the help I’ve gotten over the last few weeks. My wife has been there every step of the way. My mother has come up to help before and after the surgery. I couldn’t even pick up my undies on my own before hand. Now I can do it all on my own. It’s been brutal. I’ve had a lot of depression during the painful parts. Those dark clouds have lifted. I’m much more stable mentally since the surgery. It sucked. I feel like a burden at times but I know my family has gathered around me to keep me going.

I missed Christmas Eve and Christmas Day with family while I was in the hospital. Then after the surgery, I missed New Years Eve celebrations with family. I really didn’t miss too much and I didn’t really feel it would be wise to stay up that late anyway. They were just another day. Today is Saturday, January 3rd. I feel much better. I feel some independence with getting up. I feel the love and support from my family. I thank the staff and the surgeon at the hospital. I thank God daily for the relief the procedure has brought me. They told me no bathing or showering for 3 days. I can’t do that. I sponge bathed each day. Today, my wife washed my back to get the iodine or betadine whatever they scrub you with before surgery. She cleaned the site. Minimal blood drops on the cloth. No infection oozing out. I think we are on a good path.

Thank you for stopping by!
~Bruce

What a morning! I have had some back spasms over the last few days, and this day was the worst. I almost rescheduled my MRI appointment. My wife pushed me through. It was so difficult to just get out of bed. My lower back would seize up and cause me to collapse back into bed. My wife helped me up and into the bathroom to get ready. We were about a half hour late to the appointment. I called ahead to let them know we were running behind, and the receptionist said to hurry up to get there. I wore some clothes that didn’t have any metal, the same as last time, so I would not have to change into the MRI gown and pants. The MRI went well. I had to have some help sitting up. It was so painful that I let out a big scream. My wife heard and came running. We got help loading me into the car. I asked the tech to come home with us to help me in.

Results:
The MRI was stable. Yay! The doctor said she was happy with the result. She also told me my tumor was unmethylated. I wish they would have told us sooner. Some new study in Europe showed that 6 months of chemo would be sufficient in this case. Does that mean I’m finished with chemo? She said I could go on for another 6 months of treatment with the SOC. I’m still not sure about it.

Back pain:
I got up today with a little less pain, but it’s still there. Yesterday was the worst of the worst. My wife helped me get bathed and cleaned up. I’m having issues sitting and bending. I needed some help getting up off the toilet and getting my undies and shorts up. It’s very difficult with the bending. Little things we take for granted. I can do this cancer thing no problem; throw in some back spasms, and it’s awful. But we press through. I gotta do this. My wife stayed home with me yesterday. My mother is coming today to help me out. It hasn’t been easy the last couple days, but I’ll get through it. I keep telling myself to push through and do this; you got it, big boy. I have to be able to do things on my own. My wife can’t take off every day during this. I had a few leftover pain meds from surgery last year. I took one last night, and it seemed to lessen the pain. I took another this morning around 4:30 to get ahead of the pain of movement. I hope it will work well for me today.

Be grateful for the help you get and take nothing for granted.

Thanks for stopping by!
~Bruce

Not sure what’s going on. I know he doesn’t celebrate Thanksgiving or Christmas. I haven’t had PT in about 2-3 weeks. No texts for appointments. Last week I was canceled due to double booking. Today I just did my exercises on my own as I have for the last couple of weeks. You’d think if he was getting paid per patient he’d be more apt to contact me and get an appointment on the books. Not the case. Oh well, I have a good memory and I can do it myself. If I don’t hear from them tonight, I will just call the company myself and take care of it.

I’m also about to start my next round of chemo. I’m due to start on Sunday. My specialty pharmacy doesn’t have my meds available to refill. I mean, there are no refills available on my app to order. I let my nurse know yesterday, and she said she would wait until my latest lab work, today, to see how my levels were, etc. I hate doing things last minute. I know I don’t have to be exact with the date, but I do like to maintain a schedule. I hope it works itself out. Don’t get me wrong, chemo sucks. I’m not looking forward to it. It’s one of the least favorite things in my life right now. But I do want things to go without a hitch.

I’ve had some good days lately. I’ve been teaching my wife how to cook some recipes, and she’s nailing it. We meal prep on Sundays for the week, that way when she gets home from work, she does not have to cook a full meal. This week we made a couple of things. One was a Spanish-style pork stew with hominy, mirepoix, potatoes, and seasonings. It’s been delicious. The other thing we prepped, which we are having tonight, is a copycat Carrabba’s style sausage and lentil soup. Also very delish. Quick heat up, easy clean up, and quick preparation.

My boy Chip has been staying with me most of the day. Pancake doesn’t bother; he just comes in, eats, and leaves. Chip is my baby boy. He stays either right beside me or watches over me from his tower.

A few weeks ago, our soundbar in the bedroom went out. Normally I could troubleshoot it and fix it, but my vertigo and balance issues won’t allow me to. So my wife to the rescue. She’s not tech-savvy or an audio tech. That’s my wheelhouse. This issue caused the TV not to have any sound. So just turn up the TV speaker volume, right? Wrong. It wouldn’t work. The remote on the Vizio TV is so basic there was no menu button to access it. There is a way to hard reset the TV sound, but walking my wife through that seemed difficult with blind button presses. And to make things worse, the power cord for the TV fell out from the back of it. So she had to feel around blindly for where the power cable feeds in. Finally, we got that working. Now on to the soundbar. We ended up having to reset the router. So unplug and plug right back in. With the Sonos Beam soundbar, it’s all app-based, so I needed to be able to sign in. No such luck without the router reset. Fixed that, signed in. Now with the soundbar mount, the device is screwed into the mount. Great idea until you have to reconnect it. You have to pull the power cord and hit an arc button. It’s close mounted to the wall. So I had a good idea: flip the switch to kill the power on the power strip and then press the arc button. Same thing, right? It worked! We have working sound in the bedroom again.

Next neglected issue. My boy Chip, when he was a baby, knocked off a surround sound speaker in our TV room. Loose speaker wire and a broken mount have been staring at me for years. I ordered a knockoff replacement mount from Amazon. It was the exact same mount as the Rocketfish mount I originally used. I Frankensteined it together with a piece I needed and talked my wife through mounting it. She did great. She had to rewire a banana clip and mount the speaker back to the mount with an Allen key. Again, not her wheelhouse, but she freaking nailed it.

So that’s the update. Thank you for stopping by!
~Bruce