The journey continues…
Thank you to everyone who donated and shared my GoFundMe for 2024. Hitting the goal of $10,000 helped me tremendously with medical bills as I battled cancer and the complications that arose after surgery.
I want to provide a full update on where I am now and why your gratitude would be incredibly helpful for 2025…
In August of 2024, 2 surgeons (Dr. Ravi Rajaram & Dr. Anthony Estrera) removed a malignant glomus tumor (pictured in my cover photo) from my esophagus. This was an incredibly rare form of sarcoma that only a handful of people have ever had to deal with throughout history. Without much prior literature to base their game-plan on, the two doctors were still able to go in, reconstruct my aorta and perform a full esophagectomy to remove the mass.
Leading up to this surgery I was on a feeding tube since January, had multiple infections in my tube sight, and I’d undergone 4 rounds of AIM chemotherapy. After my August surgery many more issues arose. There were issues reconnecting my stomach to my new esophagus. A bad infection occurred and led to a large fistula (hole) in my chest that connected to my esophagus. During the surgery the doctors removed my lat muscle and used it to protect my newly grafted aorta. They also shaved down my clavicle, broke a rib and put in roughly 6-8 chest tubes. The left side of my body has now been left with severe nerve pain/damage. The pain is always there but it is managed by daily medication.
In November 2024 I started Proton Therapy radiation to help keep my cancer from coming back. After 9 of my 28 treatments, I had to stop therapy due to pericardial heart pains. The pains were similar to that of a heart attack, and I was rushed to the hospital on 3 separate occasions. On the third hospital visit the cardiologist said it’s important we do an emergency pericardial effusion. They went in and drained over 600 cc’s of fluid from around my heart (almost 2 coke cans worth of fluid).
That brings us to where I am today, the challenges I am facing and where I could greatly use your help…
Most recent scans show that my heart is free of any fluids. They’ve got me on a four week plan of steroids and anti-inflammatory meds to keep the pericarditis away, along with a new drug (Rilonacept) as a backup plan if I end up needing it. The fistula in my chest has decreased to around 4mm in size but may never close at all. Surgeons have tried twice now to install a fistula plug. The best possible outcome was that my body would heal around the plug and in a few months I’d finally be able to start eating and drinking outside of a feeding tube. It looks as though the plug has fallen out for a second time, in which case I will need plastic surgery to fix the leak. Plastics is a very invasive procedure, from what doctors have told me, and I’d like to avoid it unless it’s my only option.
Besides the fistula and pericarditis, I’ve also lost the ability to use my fingers on my left hand. It started during my pericardial hospitalization when a nurse put two IV’s into my left arm. We’re assuming he hit a nerve, and it’s caused my fingers to be immobile. If I focus and strain very hard, I’m able open my hand and close my hand, but I can’t control my fingers whatsoever. Doctors haven’t provided any explanation nor the slightest bit of a solution. We’ve bought a “robotic glove” and muscle stimulator in hopes it will help me regain mobility.
In addition to those issues, my doctors have also found a new nodule on my lungs they’re deeming “suspicious for metastases” (meaning potential for cancer that’s moved from my original location to this new one). The nodule as of November 2024 measured 4mm. Roughly a month later it’s measuring 8mm. I’ve been informed they normally can’t biopsy it until it reaches 10-15mm in size. Some doctors are hopeful that it’s inflammation and not cancer, and we obviously hope for the same. I’ll be getting updated scans early February and if the nodule has grown then they will potentially try and biopsy it.
Outside of the many new scans and procedures I’m looking to undergo in 2025, I’m also expected to visit my primary surgeon every 3 months for a follow up & CT scan.
For those that don’t know, all of my surgeries, scans, visits, etc are conducted in Houston, TX at MD Anderson’s Cancer Center. The medical bills I’ll accrue for 2025 are quite large and the travel expenses to fly from KY to TX multiple times a year are just as burdensome. For full transparency, I have been on disability since the beginning of this journey and only make 60% of my pay. I can’t tell you how helpful it would be to raise a sum of money similar to what we raised this year. I promise to fight this till my very last breath. While fighting, I’m also doing everything I can to try and keep my family and I out of medical debt. That’s where your generosity would be graciously welcomed.
I was hopeful that I could leave these hardships in 2024, but there’s still more challenges to face and battles to win.
If you are unable to donate I completely understand. Just sharing this GoFundMe is a huge help in itself. This year I received donations from people I’ve never met in my life and that’s due to your willingness to share my story.
Feel free to message me on Facebook or Instagram. This year I’ve spent a good amount of time on my phone, in hospital beds. Reading your positive messages of encouragement do genuinely help. Again, thank you ahead of time for anyone that’s able to donate or just share this story. I will try to make updates here and on social media every week or so. I love you all. God bless.
UPDATE 02/04/2025
It’s been a challenging past 24 hrs. I have 3 major health issues, and so here are the updates to where I’m at on all three:
1. I had my bronchoscopy yesterday. The preliminary results do show at least one of the lung nodules to appear to be cancerous. Full biopsy showing what type and how we’ll deal with it will result in 3-5 days. I’m praying that because we’ve caught this early, the doctors are able to go in with ablations (or whatever other technique they prefer) and kill this cancer before it becomes a bigger problem.
2. Plastic surgery will be scheduled asap on my fistula. It will be another big procedure and I’ll likely be in the hospital for over a week or so. Ideally we get it scheduled soon, it goes well, and I can finally get back to eating and drinking again.
3. Pericarditis. I am battling with insurance to be approved for a medication called Arcalyst that could essentially save my life and keep my heart healthy long term. My cardiologist at MD Anderson is willing to appeal insurance’s denial of the medication and we’re hopeful the decision is overturned quickly.
Battling a new round of cancer will prove to not only be physically and mentally challenging but also financially. Please continue to share my GoFundMe if you don’t mind. I’m adjusting the goal up a little, only because with the new diagnosis I am expecting the cost of everything to go up, more visits to TX to see my docs, conduct scans, cover procedures & prescription costs, etc.
I greatly appreciate everyone who has helped and continues to share my story.