My Grandpa and I arrive early with donuts. I rush through the door as he flips on the lights and I quickly get to work setting up the coffee station. Before long, the dim room fills with people making small talk and the smell of coffee and smoke. Moments later, my Grandpa motions for us to take a seat in the circle. He opens with a few remarks and the serenity prayer.
Events like this, those with the hauntings of addiction grow deep in my family history. Stories of car accidents involving drunk drivers, calling 9-1-1 after a potential overdose of a family member, attempted suicides with opioid pills, drunk, belligerent family members, arrests, and alcoholic anonymous meetings. I learned from an early age that drugs and alcohol were dangerous.
Not surprisingly, these fears weighed heavily on my decision to consider opioids as a long-term solution to the pain I experienced with my MPNST diagnosis. After one of my surgeries, I spent days in painful agony because I thought I could fight through it. But I couldn't. I could barely move, sleep, or function. So, I reluctantly made the trip to the emergency room where they told me they couldn’t do much for my pain unless there was a reason I needed to be admitted to the hospital. I’d have to talk to my doctor for help, they said. When I tried to explain that I wouldn’t have access to my care team until after the weekend and my doctor's office sent me to the ER, they seemed unsympathetic. What perplexed me most was how they did not feel comfortable releasing me until I agreed that my pain was under control. Huh? As the minutes ticked by and my pain continued, we formalized a plan to get me through the weekend while I waited to talk to my healthcare team.
That week, my healthcare team expanded to include pain management professionals. And after my first appointment, I received a prescription for oxycodone and months later, methadone too. It used opioids to help manage my pain for over a year, but when I was ready, my withdrawal process was carefully planned with the encouragement and support of my pain management team.
During the first days and weeks of each gradual dose tapering, I felt like I couldn’t get comfortable, I couldn’t sleep, and I did not understand how to calm the hyperdrive my brain seemed to be on. I’d stay up until after midnight waiting to be tired enough that my body and mind would just quit so I could finally sleep. Then wake up the next morning exhausted and ready to repeat the same pattern over and over again. It was hard to stay focused on my goal because I didn’t know when I’d be through the storm. I sometimes all but convinced myself it might be better to just stop trying. Just one more day, I told myself. One foot in front of the other. This is temporary. The acute symptoms eventually subsided, but the lingering affects like brain fog, memory loss, and subtle moodiness lingered.
As the weeks and months went on and these lingering symptoms began to subside, my world took on a renewed sense of life. I felt sore again after working out. I felt and experienced joy and laughter and pain and sadness differently. I connected with others in deeper, more meaningful ways. There was a profound difference. One I had not realized I’d lost.
I didn’t know that being free from relying on opioids to manage pain would be better than not, but I had faith and hoped it would. I have less pain than I did before and I can manage it in other ways now.
One of the greatest contributing factors outside of my own determination was the kindness, understanding, and support that I had throughout my journey. Kindness matters. Kindness to yourself. Kindness to our family and friends. Kindness to strangers. And kindness to people whose decisions we don’t agree with. Chose to be kind.
Since it's been a couple of years, I decided to give do a quick timeline...In January 2023 I found a mass in my leg. In June 2023 I had my first operation. Doctors thought I had a non-malignant schwannoma. In late August 2023 I started radiation because the mass turned out to be Malignant Peripheral Nerve Sheath tumor and had grown back after the first surgery. In November 2023, I had a second surgery that, again, did not produce clean margins. So, in December 2023 I had another surgery. Still no clean margins, but they got out what they could, and they thought it would be too risky to operate again. Hopefully since there were only cells left at the margin, it was possible my body could do the rest of the work. Within 7 months my scans showed evidence of a new mass, and in August 2024 we decided to accept the risks and I had operation number 4. Still struck out. So, in January 2025, I did a short round of radiation therapy before starting chemotherapy in February 2025. After 4 months of Chemotherapy, my scans started improving. At that point, we pivoted to a far easier and less aggressive treatment: immunotherapy.
It’s been almost a year on the immunotherapy treatment. The best way to describe how things are going is that they are stable, there have not been new masses, and so I stay the course. Immunotherapy is every three weeks and scans every 2 months or so.
In October/November, I decided it was time to figure out what my body was capable of with all the changes from surgery and treatment. It’s different and feels strange sometimes, but I’m doing it. I have more energy to spend on adventures with friends and family and doing things that bring me joy (browsing bookstore, trying new coffee shops, and spending time in nature). And I’ve been getting things in order so I can start giving back again to my community. Thankfully, life is more about living.
A few Song Suggestions for you:
- “Vision” - Matt Hansen
- “Catch a Fire” - Mat Kearney
- "Blame Texas” - Cody Johnson
- "Sapphire" - Ed Sheeran
- Suggest a book. I am always on the hunt for something new!
- Send me mail!
- Want to visit the Bay Area?
- Donate to my GoFundMe to help me pay for my insurance, medications, procedures, parking, transportation, etc.
- Consider supporting a vendor dedicated to cancer awareness, like DogLove Original Brand
You are welcome to continue to support me on my journey. Some ways you can do that are:
