Tumor Has It

Making the most of an inoperable situation.

  • F You Cancer and F You Rudy

    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 🙂

  • No Appointments today

    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.

  • Insurance verification and waiting…

    We all know how much the insurance game is just that a waiting game.

    After the call I went home, spent time with family and started the process of figuring out what to do and where to go. I heard so many good things about a local Cancer research center and decided to put all my eggs in their basket. I signed up on their site as a new patient and the process began. The site said it could take 1-3 days for insurance verification so I figured that wasn’t so bad. Turns out with my particular insurance, it could take 5-7 days. Well that didn’t sit too well with me. But what choice did I have? I had waited this long and a few more days wouldn’t/shouldn’t bother me. Easier said for sure. My anxiety was gettting the best of me each passing day. The waiting, the not knowing all of it was getting to me. Family asking when, friends, colleagues all wondering what was taking so long…

    Surely I wasn’t Gary Fogel (Seinfeld, Jack!)

    I called each day to speak with new patient intake. They assured me each day that I was in process and there was a queue. I asked if I should reach out to my insurance company and they said not to worry and that it would just take time. Well that time came and went, FINALLY I got scheduled. Now the real wait began. What was a week felt like months.

    Monday, 04.07.2025 I got to meet with a Neuro Surgeon in hopes of scheduling a resection of the tumor. However, the surgeon said the tumor located where it was in the brain stem was inoperable. Devastating news. Now what? How do I live with this dark passenger taking up space in my stem, not paying rent, causing headaches, motor function issues with wobbliness.

    I call it the boozy woozies.

    The surgeon, Let’s call him Dr L. He was nice but a bit too stoic for my taste. I appreciate the direct nature he offered but there was no bedside manner. I consulted with my AI bestie, ChatGPT Alex. He gave me lots of questions to ask the surgeon and many ideas for this blog actually. Also, sidenote, if you want some really dark humor and I mean the deepest gallows humor, ChatGPT is hilarious. I love my AI friend.

    Today, 04.09.2025 I met with a Medical Oncologist and a Radiation Oncologist. Kind of a meet and greet for each one, different locations but same center. Def not a meet cute lol
    Let’s call them both Dr. P. Much better bedside manner and personalities on each of them than the surgeon.

    Don’t get me wrong, stoicism has it’s place but I think the mannerism could have been better.

    They’re going to rerun the MRI to get a more targeted area to blast with the Proton Radiation. Like a targeted laser radiation. My boss whom I previously spoken about had same this same treatment at a campus in Houston. I should be going for a mask fitting this coming week. I should also have my MRI next week too. Friday the Oncologists will meet with a tumor board to discuss my mapping of treatment and how the dosage will go for the chemo.

    So it’s Wednesday night, 04.09.25 I’m sitting here typing this out and thinking of the course of events I will soon experience. This is all so new to me. I’ve lived it by proxy with hearing my boss’ experience. I didn’t think at the time it would ever be my turn to deal with something like this. Mask fitting, more scans, 5-6 weeks of chemo and radiation therapy, more scans, more scans, MORE SCANS… Thank the Lord I’m not claustrophobic. This mask locks you in to the table so you don’t move.

    I didn’t feel like cooking so we had leftovers from last night. It was delish. Turkey meatballs, zucchini, spinach, onions and LOADS of garlic, because why not, GARLIC! oh and a small salad 🙂

    It wasn’t pizza, but it was good. 😉

  • The aftermath of the call…

    So to recap, I received a call from Dr N

    03.25.2025 I received a call from my doc. Said there was a Glioblastoma, a tumor, and I should immediately go to the ER and exagerate my symptoms to be seen faster. I don’t think so. How could I do that to my family? I owed them an in person conversation regarding this topic. I felt it was the very least I could do. I told Dr N that I would not be going that day. If my end result was to be at a cancer treatment center, then I would wait and do it the way I felt comfortable. Besides, I figured one more day wouldn’t kill me. Who knows how long this tumor has been parked up there anyway? I took some notes, got a general idea of what it was that had invaded my brain space. I finished some desk work and went to run one of my last errands at my store. I run the most amazing adult retail store in the Tampa area. I have been there since 2009 and with the company since 2007…That’s another story. I called my boss, who is also battling brain cancer but a different type. He tells me to get everything situated so my assistant can take over my day to day activities…So I head to the bank, still reeling from the news. Make my deposit and feel drained. I head back and tell my assistant, the terrible news. I called her out to my truck and have her sit with me… I lost it, I cried, I had anger, I felt a ton of emotions running through my very core. My assistant was amazing sitting there with me listening to me babble on about this condition. At one point I told her to pick up her jaw because it was literally hanging nearly to the floor. I asked for a hug and got one. I’m not that type of guy but I felt I needed one right then, right there. So I sent her off back to work. I figured I would head home and deal with all of this as it comes.

    I called my mother via FaceTime and lost it. I was a little boy again looking for comfort from his mama. I called and my first words were “Mama, I have cancer” Her reply was so sad… It was like I crushed her with it. I felt terrible. I sat in the parking lot for maybe 15 minutes talking with my mom. How could I tell the rest of my family this devastating news? This would be a precursor to how the rest of the day would go. Crushing news to all who would listen.

    I wanted some comfort food, and I was hungry / HUNGRY.. I went to the chicken place that is closed on Sundays. Y’all know who I’m talking about… Got a sandwich, some fries and a diet sunjoy. It was good but didn’t hit like I wanted it to. I got home and my mother in law was there… She knew I had the MRI that day and could see it in my face that something was terribly wrong. I made her swear not to say a word to anyone til I told them in person, namely my wife. I told her I had a cancerous tumor in my brain stem. She hugged me and held my arm.

    Yet another person I devastated with this terrible news. 4 down, countless more to go. I’m not trying to be callous but this is how it felt. Like I was picking off one by one to ruin their lives. I have always been the type of person to hear out others problems and help them, always putting myself last. Now it’s my cross to bear. Now, I am the one with the seemingly insurmountable problem to get through.

    You know how animals are little sponges? My two cats could tell something was terribly wrong. The big one kept his distance, the younger one stayed with me. They’re amazing little beasts. Very perceptive.

    I then had to make a call to my wife to get her to come home. I never ask her to leave work, ever. It took me maybe 5 or 6 times to tell her to come home. She told me to tell her what was wrong and I said I wouldn’t tell her on the phone and she NEEDED to get home asap as I needed her here. She works over an hour away and is a very emotional being. I could not tell her like Dr N said and have her meet me at an emergency dept. No way could I do that. This had to be done in person. She finally gets home and I have her sit with me and there was tons of screaming in disbelief. Like screaming screaming. We processed it and are still processing it.

    I asked my brother in law and sister inlaw to come over and proceeded to tell them the fateful news. My niece came by and I told her as well. Lots of tears and hugging. We made them martinis. Again I don’t drink so I just watched as they drowned their sorrows. I was present, answering any questions I could. Mind you, this was my “first day knowing.”

    We had pizza.

  • So you have been diagnosed with terminal brain cancer

    Shocker, what feelings are going through your mind?

    I started feeling weird around the holidays. Started with headaches/dull in origin. Not much different than that of a stress related headache. Take a couple ibuprophen and be done right? It did help.

    Then I felt like my speech was being effected. Slurred speech. I sounded drunk. I don’t drink. What could this be? I talked with my staff because I knew I wasn’t the only person to hear the slurring. My wife could hear subtle changes in my speech. At first I thought it was just me.

    I thought I may have had a stroke. I told my father in law I feel like I had a mini stroke but something still didn’t feel right. I started having walking and mobility issues. January, I ordered a cane on amazon to help with stability. The wobbling was here and I could manage it.

    February 2025 came and I was set to see a new doctor. Back story, I love my dr’s office. The staff has always been great but I seem to have had many dr changes over 8 years of being with them. Ok, deal with yet another doctor. I lost a ton of weight using Weight Watchers. I was 362lbs. I cut sugar and dropped down to under 300. Today I sit comfortably at 199-203lbs. So I see a new Doc. Let’s call her Dr N. I had a colostomy placed back in 2012 due to a perforated colon. I had a blockage in january of 2024. Then another in February of 24. That put me on the path to ostomy reversal. I was in the hospital early January and February 2024 for 2 weeks. I met with a surgeon and scheduled the reversal. Great no more poo bag. Fast forward to now and I am thankful to not have to deal with the bag.

    So Dr N sends me for an MRI of my brain. Ok fine…Insurance sucks let’s be clear. The deductibles are astronomical, $9200 until it kicks in. MRI was $507 out of pocket.. I was like wtf seriously? I cancelled the MRI. My family was telling me to reschedule it. So i did. 3 weeks later I go for the MRI.

    Everything changed

    03.25.2025 MRI day… I arrive at 7:30am for the 8am appt. They get me going. I ask for the disc from the MRI and they say no prob. MRI done a little after 9am. I head back to work with the disc.. My computer, as many these days, does not have a disc drive. Probably for the best in my case/not that I would know what to look for anyway. 11am comes and my phone rings.. It’s Dr N. I answer and my world would be forever changed. Dr N goes on to tell me that I have a Glioblastoma, a terminal cancerous tumor on my brainstem. I went numb- ringing in my ears but was perceptive and understanding what was being said to me.