Making the most of an inoperable situation.

It’s been a couple days and I’ve been home recouperating and recovering from the biopsy. The biopsy went well so they tell me. We should have some results in 4-5 days. I’ve been having some double vision and unsteadiness walking. I have a cane that is allowing me to get around easier. This is normal according to Dr Google. I have what is called dilopia. Each passing day seems to leave me in a better physical condition. I’ve been doing more on my own, trying not to rely on my family as much with getting around the house. The first day home was a bit trying. My cats have been my little medical assistants checking on me then leaving me to rest. They’ll come in and make sure I’m ok and then they leave.

It’s Easter Sunday. I sit here reflecting on the past few days and I find myself with a sense of gratitude for my family helping me. My wife has been a rockstar attending to me and my needs. My mom came up and hung out with me yesterday. My in laws have been amazing helping me and just being there with me for support and well wishes. My mom brought up some frozen mini quiche and I had that for breakfast today. It gave me a nice feeling to cook for myself. Little things like just making myself some breakfast help me with self confidence.

When I was in the hospital for the biopsy procedure, there was this big brother overseer robot in the room… I didn’t appreciate that one bit. In fact I hated the watchful eye over me. I understand the purpose of it but there was zero privacy with it. I couldn’t get out of bed so using the urinal in the room with this thing…I felt like it and whoever was on the other side was watching me. I kept calling it a robot perv lol I had to remind myself multiple times of their code of conduct. I didn’t want to get kicked out of the hospital for my own feelings of being watched. But at the same time, how would you feel if your every move was watched by some faceless being on the otherside of a device? I would then page the nurse to unplug it and remove it from the room when I had to relieve myself. 24/7 monitoring. I told my wife if we had to have a private conversation I would then just text her. It was ANNOYING!

I flipped this thing off multiple times haha.

All in all I feel each passing day brings me some more strength and normalcy. I’m finding more confidence each day.

Today a physical therapist is coming to the house to do what I have no idea. My wife made me laugh when she said PT on Easter Sunday?! Yesterday I placed an Instacart order for some fresh fruits and snacks for the week. I haven’t had any frosted flakes in ages so I figured what the heck why not? I know I’ve gained a few pounds with the steroid meds but I need some comfort foods and I’m excited to have some what we call chunk doggin foods. I feel kinda gross not showering the last couple days but I got some no rinse bath wipes from Amazon til I gain more stability and feel I can safely shower. I also ordered a shower chair to help with this. My sister in law is preparing an Easter dinner and they said they’d bring me a plate over. I do not think it would be wise for me to venture out just yet being so unsturdy on my feet.

Like I said earlier, my boys have been checking on me intermittenly throughout each day. The little guy, Chip was a bit standoffish at first with the weird hospital smells etc but he has since warmed back up to me and climbs all over me. I love these little furry beasts so much. The big one seems to love knocking my cane over.

Happy Easter everyone. I’m here and doing well. Just gotta get this vision under control. The last couple days have been trying but I am doing well. I felt like I was in two different bodies at the same time. Today I woke up and felt like I was in just one body. It’s a weird feeling but I’m glad that is over with.

I firmly believe in the power of others. What they bring to you, what they give you in support. Not financial support but with genuine and true supportive conversation and actions.

While I was turning in my Jeep Grand Cherokee at the dealership today I met a wonderful man we’ll call D.
People are thrust into your life without you knowing their back story. Without you knowing anything about them. This guy helped me out so many more ways than you’ll ever know. There are no chance meetings. I feel meeting this gentleman was key to my progress with this disease. I saw a post earlier this morning that said God will speak to you today, will you listen? I shared my story with D and he shared his family story with me. I won’t go into the details but it was a meeting I will cherish for a lifetime.

I was receptive to what was spoken to me. We shared and laughed. I truly feel you can be put into a situation that will mold you for life. This was today. Such positivity and caring from this stranger whom I now call a friend. This guy didn’t have to sit with me but our appointment concluded around 2:15pm. We sat and talked, shared our stories for the next hour. I felt an overwhelming calm when speaking to my new friend. Truly a blessing this guy was to me today. I didn’t think I would ever meet someone like this in today’s appointment turning in a lemon vehicle. It just goes to show you that there are no chance meetings in life. Everything seems to be laid out for you to grasp. It’s all a matter of perspective and if you are receptive to what is ahead of you, it makes the things in the rearview so small.

I thank God for this meeting today. D you are an amazing individual and I can feel the love and compassion you had towards me going through my new journey. Thank you so much for taking the time to sit and share with me this afternoon. You didn’t have to do that, you could have just done your job and closed it out. I believe the Lord chose our paths to cross and I am so thankful for this interaction. I can only imagine what others have gone through in a similar situation.

Will you listen? I did and I gained a new friend and an even more open mindset.

Jeremiah 32;27
Behold, I am the Lord, the God of all flesh. Is there anything too hard for me?

Be bold in your actions. Stand firm.

I sit here thinking of the week- how daunting it has been…And it’s only Tuesday. I remind myself of things that have passed. Accomplishments I’ve made. Trials and tribulations I have gone through. This too shall pass enters my mind.

Tomorrow will hopefully be less stress induced. I am surrendering my lemon Jeep Grand Cherokee. It has been a long time coming to get rid of this vehicle. I recently purchased a replacement for that vehicle. Had I known of the incoming diagnosis, I may have gone with something a bit less extravagant. But I love this new Gladiator. It’s always been something I wanted. Rooster, the name I gave to my Gladiator has been a dream truck. I love driving it and clearing my mind of what has come to engulf my thoughts. Intrusive thoughts. Bad thoughts. It keeps me happy. My family keeps me happy. My cats keep me happy and stressed lol. This Jeep keeps me happy (H. Ford) I love that advert. I feel it wholeheartedly.

Back to One Day At A Time. I have learned over the past month that I need to take things one day at a time. It allows for my mind to focus. It keeps me somewhat grounded in the face of this new adversity. Focusing on minor details and getting through each day one day at a time keeps me in line. Keeping my faith and positivity up helps so much. In the past I would take for granted the relationships and the compassion I would overlook. Being in this situation helps keep your mind focused on tasks ahead. Sometimes we can overlook the mundane day to day crap life throws at us. We need to fix our thoughts on what is promised. Life has thrown me some lemons and I have made a zero sugar lemonade.

Take what you will from this. I have gotten a lot closer with friends and family through this trying time. I value relationships much more and love more. I see now, how much people, family and friends have come out of the woods to share their love and compassion. It’s truly a blessing wrapped in a pretty f’d up bow. Getting a diagnosis of this magnitude has been so humbling. I don’t think I’d ever change a thing. Sure I’d love to not have a terminal diagnosis but at the same time, it forces you to cherish the relationships you have and will have. I love more, I feel more and I value the little things much more. Small interactions and big ones. They’re all the same to me now. Not a day passes that I don’t think of how much each person in my life, has mattered to me.

Sunday night 3 of my staff sent me a pic from work holding a sign stating they missed me. I miss them all too. In the past, I viewed myself as just their boss. But to know how much I have impressed you with just kindness and respect means the world to me. KO, AO, AB that meant the world to me. It’s the little things like a pic in a text. These things move mountains when you’re faced with your own mortality.

One Day At A Time. Seems cliche, but if you are ever facing uncertainty, a small phrase like this can keep you focused one the days, weeks and months ahead.

Tonight I made a meatloaf (mom’s recipe) green beans and some mashed potatoes. Comfort food at it’s finest. I loved every bit of it. Then we had some carrot cake. I love that stuff.

Met with the neuro sugeon yesterday. We were at the Cancer Treatment Center yesterday from 10am – 5pm. Long day, especially with my new normal. Started out with an appointment with the Neuro Surgeon, Dr. L. This time the doctor was much more personable and had a much better bedside manner. He met with the tumor board this past Friday. They decided it was more beneficial to do a surgical biopsy of the tumor. The reward of knowing how much to map out treatment outweighed the risk of the biospy. Of course there are risks associated with any surgical aspect. With a tumor in this location, it is generally not advisable to biopsy as the brainstem feeds a wealth of information down to your other parts. Some of the risks would be brainswelling, loss of swallow control, breathing anomalies, and loss of motorfunction. Many docs got together at the tumor board and discussed my situation and they trust that the biospy could give a better case for chemo/radiation treatment. I will trust their capable hands.

After the Neuro Surgeon appointment, they sent me for an MRI of my head and neck, to pin point the location of the tumor and with a plan of biopsy. I was asked what I’d like to listen to and I told the MRI tech what he had on was fine. Some oldschool Michael Jackson… However, he did not play it through the headphones. So I just sat there with the constant humming and whirring of the MRI machine. Not to worry, I can just focus beyond this sound and close my eyes. I really have to say the staff and everyone we’ve met thus far at the Treatment Center had been wonderul and nice to us. It is quite comforting to feel this when you are at a place of such magnitude. Once the MRI was done, we had lunch. Hospital food has come a long way in the past few years. I had a great taco salad. So yummy. The girls all had egg salad sandwiches. My wife, mother and mother in law accompanied me to the all day adventure. After lunch, I had an EKG for preoperative testing. After EKG, I had some bloodwork done, more preop testing. Lots of waiting. All in all it was a good day spent with loved ones. Just physically and mentally draining.

So I go in Thursday for the biopsy. A small hole will be drilled into the base of my skull. The surgeon will then under CT, place a needle biopsy into an exterior location of the tumor and extract some cells. They will then send that off for testing to see what type of cancer cells there are invading my brain space. I’ll be kept overnight for monitoring. Keep sending your positive vibes and prayers. I could use all the love and help I can get. This is not the end, just the beginning.

After it took my pharmacy two days to receive my steroids, I started the increased dosage Saturday. I had trouble sleeping last night. Not so much sleeping but falling asleep. Once I did, I slept thru the night. Normally, since the diagnosis, I take an RSO capsule to aid with falling asleep. The RSO just allows me to drift off into lala land and I fall asleep easily. The steroid just kept my mind active.

I was on a single dose of 4mg once a day. This new dose is 4mg 3x a day. I’ve not noticed any side effects from the steroid or the increased dosage. I do notice I am no longer getting daily headaches since on it. Bonus I suppose.
I will take whatever wins I can get thus far. Small wins are wins. I should probably take the stomach med Protonix, but I’ve not noticed any GI distress as of yet.

Tomorrow I go to the neuro surgeon again for a consult regarding the biopsy the tumor board wants me to get. Kind of a little nervous about that. Not sure what they’ll say. I’ll just take the appointment as it comes- see how it goes. I noticed on my patient portal that they have surgical appointment set for Thursday. I guess it’s a go regardless. It’s on the books.

This coming week seems like it will be a whirlwind. I have multiple appointments with the oncologists and pt/ot/speech therapy, along with a surgical consult and possible biopsy to be performed Thursday. Friday, if all goes well with the biopsy and I’m not left a vegetable, I have the pt/ot/speech therapy in the morning.

Friday afternoon I am supposed to surrender my Jeep Grand Cherokee. I recently won a lemon law buy back situation with FCA/Chrysler. Surrender is for 2pm at a local dealership. Both me and my wife have to be there for surrender. This has been a long time coming. I can’t wait to be rid of this lemon vehicle. It’s been sitting in the driveway untagged, un-insured and waiting on them to finalize payment back to me. Lots going on this week and I can’t wait to be done with the car portion. This should allow me more focus on the treatment and not to have the burden of the lemon vehicle just sitting there collecting the pollen that falls this time of year.

I also received some smoking cessation patches and gum in the mail yesterday. I quit smoking cigs back in 2012 but started vaping then. They say quitting vaping will be more difficult than the cigs but we shall see. I have been supplementing the vape with an air device. No combustion or vape going into my lungs just air. It seems to help but I still crave the nicotine. This was also set up by my oncology team thru the hospital. My quit date is a week from Wednesday. They tell me to continue with the vape until the quit date and try little mini quits in between a week ago and the quit date.

Wish me luck as this week seems like a fresh new hell of appointments to deal with.

We went to the garden on olives last night for dinner, I had some lasagna and a free take home meal of spaghetti and meatsauce. It was delish. Tonight we had the spaghetti meatsauce and some salad.

Your furry little face. The way you look at me.
How you beg for attention- like you are starving for it.
When I used to walk in from a long day at work, the way you met me at the door. Walked me in and our evening began. You waited for me all day and I missed you terribly. We had our routine after work. Now my days are consumed with phone calls from medical professionals, visions of you checking on me to see me as I am now. Do you honestly know what is happening? I don’t think you can handle the weight of it.

I keep myself focused on this newness. I try to shelter you and your brother from it. Your human mom knows more than you ever will. More than you can even comprehend. But I want you to know. I want you to know all of my darkness, my light, my love. I want you to feel what I feel without feeling what I feel.

How can you impart this magnitude on a furry little being? Why would I want to? What would this accomplish? It would bring me closer to you. Is that selfish of me? Am I mental for feeling this way? I love my boys, I just want them to know.

By Pancake and Chip, as told to the Tall One

PANCAKE: We’ve noticed some changes around here. There’s more sitting. More napping. More staring out windows like we’re in a French film. The Tall One—our human—has been going through something he calls “glioblastoma,” which we assume is some kind of new food he’s hoarding and not sharing. Rude.

CHIP: It sounds like attacking shadows, and knocking things off shelves. But let’s stay focused.

PANCAKE: Right. The point is: the energy in the house is different now. Softer. Slower. There are more quiet moments where we all just… exist together. It’s kind of beautiful. I like to rub up against the Tall One and purr so hard my whole body vibrates. It’s my way of saying, “Hey. I’m here. You’re not alone.”

CHIP: I do this to make sure he’s still with us. It’s a vital service. I’m basically a medical professional.

PANCAKE: We don’t understand everything, but we do know this: love is loud. It shows up in the small things. Like a gentle scritch behind the ears. Or a human pausing mid-tear to smile at your weird little loaf pose. Or letting you have the softest blanket even though it was definitely not meant for you.

CHIP: Also: food. Love is food. Give us more food.

PANCAKE: In conclusion, we—the cats—are on the case. We’re here to supervise naps, monitor emotional levels, and occasionally run on the wheel at 2 a.m. because the ghosts said so.

CHIP: Stay cozy. Stay weird. Stay loved.

PANCAKE: We’ve got you, Tall One

There’s this strange, quiet warping of time that happens after a diagnosis. The clocks still tick, the sun still rises, the cats still scream for breakfast like they haven’t eaten in 84 years—but something in the air feels different. Like I’m walking through a dream that knows it’s being dreamed. Lately, I’ve been thinking a lot about the shape of my days. Not the hours, not the schedule I’ve long since stopped pretending I’m “keeping busy” but the actual shape. The contours of what a day means now. The soft edges of mornings with my wife, the gentle absurdity of Chip climbing into a box he’s already chewed through, the small rituals that anchor me when everything else is spinning. It’s funny what sticks and what slides away. Before, there was a constant forward pressure. Stuff to do. Bills to pay. Cars to curse at. Now, everything’s… quieter. Not in a bad way. More like a stillness. A kind of calm you only get when you’ve been forced to stop pretending you’re invincible. There are things I miss already. Not because they’re gone—most of them aren’t—but because I know they won’t always be here. Or I won’t. I’m not being morbid; I’m just being honest. That’s the trick with this kind of thing: you start getting very, very good at honesty. Mostly with yourself. Like: yes, this sucks. It super sucks. It’s absurd and unfair and maddening. But also: life’s still happening. Good moments are still good. A really cold glass of iced tea? Still slaps. Pancake’s slow blink. Still magic. My wife’s laugh? Still the best sound I know. It turns out there’s a kind of freedom in the narrowing. When the big plans fall away, there’s more room for the little things. And maybe that’s the point. Maybe we spend too much of our lives looking at the horizon and not enough time noticing the flowers growing through the cracks right in front of us. I don’t have some grand takeaway. I’m not here to inspire you with a Ted Talk voice and a PowerPoint slide titled “10 Lessons from Brain Cancer.” I’m just here. Still here. Living the day I’ve got. Letting it shape me back. And for now, that’s enough.

So Monday we met with the Neurosurgeon. He told me my case was inoperable, not even safe to do a biopsy.
Today, the doctors met with a Tumor Board. They discussed my case and recommended that I have a biopsy to further allow them to map out my treatment for chemo and radiation therapy.

I was taken by surprise. I thought it wasn’t advisable to have a biopsy done as it could lead to further damage or possibly cause some cancerous cells to migrate to other parts of the brain. I was fine with just leaving the mass alone and trying treatment without upsetting my dark passenger. Now you want to possibly awaken the dragon? Honestly, I don’t know what to think. Maybe in the grand scheme of things this is ok. Maybe many heads on this are better than the one surgeon. I will trust the process, but I’m at a loss because you literally just told me this wasn’t happening!

Ok I get it, it’s just another consult coming up on Monday. I will have questions. I hope you have answers. Be nice Bruce. Listen and take it all in. These are the things I have been telling myself today. When the scheduler called me today, I didn’t want to think about a biopsy or any dark thoughts that came to light. But here we are, mind racing, wondering what this all meant.

We just got back from dinner and I’m sitting here writing. What’s next for me? What fresh hell will I navigate this week? Are there many more curve balls headed my way? Head down, step into the swing. You got this big boy.

So you wanna know who Rudy is? Rudy is the name I gave my tumor. No one likes a Rudy, I certainly don’t know any that leave a positive image in my mind. So yeah Fuck You Rudy and Fuck Cancer.

This shit is for the birds. I’m staying positive throughout this. What choice do I have? I have to for my sanity and my families sake. People outside looking in will say you’ve got this, you’ll crush it. I believe wholeheartedly I will get through this but at the same time, it really fucking sucks. I see my own physical decline. I see the looks I get when I walk. Even tonight at the restaurant, I could see people looking at me with a four legged cane probably wondering what is going on with me etc. I feel the eyes of others judging me. I was never bothered by this before but now that it happens, I feel it. A lot.

More calls today, more check ins from the treatment center. I was watching a killer show on Max today, The Pitt. Great medical drama. Between the calls I paused and would go back after each call. It was good to keep my mind clear between the madness of the nurses and staff. I did some work this morning, processing orders/invoices. Chatted with my assistant. Entered a new lingerie order. Felt normal, albeit my new normal.

Normal, that’s a concept. Have you thought about your normal? I know what mine is currently and what it used to be. I have had many different normals in my life. Getting a colostomy was a normal, living with said ostomy was a normal. Getting it reversed was a normal. I adapt and conquer. Accept your new normal and move on. Because that’s what we’re supposed to do as good human beings right? How many normals have you had to deal with? How many times do you just pivot and move on? Acceptance is a virtue. It’s hard as shit to accept this many normals.

I will adapt. I will conquer. I will move on.

Tonight we had our normal (there’s that word again) Friday night dinner. Spicy Chicken sandwich, fries and a diet sun joy. It was delicious. I kinda want some ice cream 🙂

I can breathe, relax and not think about the diagnosis for a day or two. Well I thought that was the case. The cancer center called me multiple times today. Social worker calls, MRI Scheduling, Mental health check calls.
LET ME REST PLEASE. My mom came over and I worked remotely. Entered a purchase order, placed a couple of more orders for some product replenishment. Boring but fun stuff.

In a previous post I mentioned I run an adult store in the Tampa area. I started with this company in 2007 as a weekend clerk to pay for a new car. A shitty little Toyota hatchback. It was nice, I was 27 and it was my first new car. They certainly don’t price them like that anymore. Under $10k cheap payment, cheap insurance. I needed more income at the time to supplement this purchase. I knew my brother worked for a good company and some amazing bosses. I threw my hat in and got the job. Retail, adult, yikes! Completely different than what I expected. But it was like home. I felt a sense of peace at this store. The friendships and coworkers I had were amazing. Some of them I still chat with to this day. Most have moved on. Months past and I found myself being asked to head an ebay site for the owners to sell DVD. Transitioned to that position fine. Did this for about a year, still with the X company, then they asked me to head up surveillance as the old guy who did this retired and eventually passed away. Another year goes by and I find a certain location in Tampa had some theft. I investigated and finally caught them in the act. Was told to head out there and take over immediately. This was near midnight on a Monday. Waited for the owners to show up and the change in management took place.

I was in a limbo kinda shit-uation. This was 02.09.2009 After about 30 days I was wanting to go back to my other job at surveillance and I asked if I could/the commute wasn’t terrible but it was far to me. St Pete to Tampa, 8am-8pm then 10pm-2am. Long hours for sure. Back at it again in the morning. I was drained. They told me if I liked my team and enjoyed the change of pace to stay there. I was just supposed to be an interim manager til they found someone but I was kicking ass in this new position. I didn’t expect it but I felt like this was a good choice. I could eventually lower my hours and not have to have multiple jobs. Great! The location I took over was in major debt, theft was high and the morale of the staff was at an all time low. Time to clean house and fill it with product and more productive people. One by one they either quit or were let go. This happens, it’s normal in a change of leadership. I never had a staff before, I never had this much responsibility.
I LOVED IT.

Power does not corrupt absolutely. I told myself to always treat my staff with respect and have an open mindset, be mindful of feelings and concerns everyone had. I did this. It was working well. Of course you will have the bad employee who can’t be counseled or helped. Move on and replace. No need for the negative energy to spread. I’ve been at this location since 2009.

Around late March of 2012 my fiance/soon to be wife’s father was ill and passing. She went to NY to be with him near his final days. We FaceTimed one night and I told her I was having stomach problems. I was plagued with diverticulitis since 1999. I figured it was another flare up. Not to worry, this too will pass. It did not. She flew home a day or two later and I was still in major pain. Turns out, my sigmoid colon had perforated and had spilled out into my abdomen. I was grey, sweating through all my clothes. The sheets on the bed were changed multiple times. We went to an urgent care center and my blood pressure plummeted to 60/40. The surgeon performed an emergency surgery to place a colostomy and remove 7 inches of the colon. They placed me in a medically induced coma for about a week for my body to recover. Then on to ICU for another week. One of the nurses told my wife that I had my age on my side and by the grace of God I’d pull through. I was 32, not yet married and my beautiful soon to be bride was there by my side the whole time. She’s still here for me and with me.

How do I live with a colostomy bag. It was embarrassing at first and I tried to hide it. Living with one of these is no joke. Hernias develop, weight was gained. Sense of self worth was low and noisy sounds were uncontrollable. I would excuse myself and my “bag farts” all the time. Eventually I found humor in it and dealt with it. One time while shopping in a grocery store the bag made a loud sound and I said to an elderly woman passing by EXCUSE YOU Ma’am. Thinking back the lady probably thought I was nuts for blaming her for the gassy sound but to me, at the time, it was hilarious. I dropped a bunch of weight by cutting sugar and fatty foods, started using WW to track meals and lost a ton more weight. January and February of 2024 brought on challenges and intestinal blockages which put me on a path to reversing the ostomy. I’m so glad I did. This past year with out it was amazing. I could be normal again.

My transition back to work was fine after the reversal. My bosses were cool with me easing back in. My staff understood and my assistant, let’s call her A, would light a candle for me and my health. (She still does this from time to time with my new diagnosis) It was so nice to see such love and support from my staff and coworkers. I truly felt it. I would tire easily and told myself you just had a major stomach surgery, take your time. I did. I had one complication with fluid build up in my abdomen and it landed me back in the hospital for about a week. No problem, they took care of it and me. Went home and went back to work. Slowly but surely I was gaining a sense of my new normal and I was bag free!

I feel like I was put on the path without a bag to handle this new diagnosis. I honestly don’t know how I’d manage dealing with an ostomy and brain cancer at the same time especially with the motor function decline and the boozy woozies. Lately I’ve been having some right side weakness and dragging my right leg. Not so much dragging but not walking properly.

My mom brought me a donut today, it was awesome.