My Opioid Story

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

However you have or do decide to support me, I am grateful. 

You are welcome to continue to support me on my journey. Some ways you can do that are: 

HiC-cUP

Let’s talk about hiccups…I’m sure you can summon up a memory when these mischievous tricksters showed their faces in your day?

More recently I’ve been around babies. And one thing I’ve noticed is those little cuties get hiccups A LOT. And I did some research and found that while common, it is not well understood why they get them so often. Heck, it’s not certain why we get them, right!?! So, no surprise there. But I sit there looking at a baby with hiccups and I think, “oh no, how can I help you! Are you okay? Does it hurt? You know because my hiccups HURT.” Then I try saying, “boo” to scare the little nugget, but not scare them. Just a “boo” that makes the tricksters scram but not make baby cry. So far, the hiccups are winning. Does that make me a boo-er? Like someone who is known to scare babies?

The times I have most often had hiccups is after drinking alcohol. And these monsters hurt. I mean hurt. Whole body hurt and when they happen, they sound like devils. But what do you say to that? How do you address a hiccup? … Bless you? Salud? Are you okay? Would you like a glass of water? Can I elevate your feet? You should do a handstand while trying to eat peanut butter. How about we go play (secretly in your head, it’s I’m going to scare the sh*t out of you, but I’ll tell you I’m doing something else).

I remember. Several times. Getting hiccups at my grandmother’s house. And I can’t remember when I tried doing a handstand against the wall (please, ya’ll I wasn’t a cool kid who did cartwheels and flips…I could do a summersault, though, does that count as cool?) while eating peanut butter, but I think it worked. I think getting scared worked too. Oh, and the trick of trying to down too much water hoping your body would forget it needed to be doing the hiccups…I think maybe I just got wet and upset with that one.

Hiccups can be strange.

I think the same word can be use to describe talking to friends or family going through, dare I say a cancer diagnosis, cancer treatment, cancer infusion, cancer blood draw, cancer emergency room visit, cancer surgery, cancer dressing change, cancer maintenance drug, cancer history, cancer history in family, cancer _____ . Cancer. Cancer. Cancer. CANCER. CANCER.

Initially, I intended to provide examples of metaphorical hiccups and create analogies of how hiccups are just speed bumps in the road. Small things. Things not usually remembered or given much thought to because they are there then they are gone.

But I’m venturing into new territory here. Territory I didn’t plan to write about in the first place, but here I am following the voice in my brain. And shifting gears. So keep the hiccup part in your head, but also keep your mind open.

I picked up a book the other day for book club. And usually, I would’ve grabbed it off the shelf at a bookstore, read the back cover, discovered what or if there were other books by the author next to the book I picked up, googled the author, wondered if they had an Instagram, scrolled through. I don’t leave rocks unturned. I read consumer reports. About sunblock. About cars. About mowers (I don’t have a house, or a yard, or need for a mower, but it’s interesting and not too many pages past sunblock). But I did not this time. I just looked at the cute dog on the cover and the girl sitting on her VW van. Read the mystic subtitle and started to read.

A few pages in my sister yelled that dinner was ready. I joined her and talked for a moment about the book I had just picked up and how it seemed like it was about a mystery diagnosis that I thought would lead to a complicated autoimmune disorder diagnosis.

Nope.

The memoir details a journey of a beautiful, strong, and brave young woman’s life before and after a cancer diagnosis. And I would have known that if I had started my research by flipping over the book. I am glad I didn’t, though, I’m not sure I would have read it.

Back to the hiccups…my transitions are terrible this time….but it’s okay!

I don’t’ know what to say to someone with hiccups. Just like I can’t tell you the secret words to comfort me or others who are suffering, who have cancer. I’m not sometimes sure what I need (to hear). I’m stubborn. And I can sometimes keep the hard things to myself. I despise needing help because of my disability, because of my disease, because of my situation. I don’t know how to ask for it sometimes when I do. I’m a walking hiccup.

So what next…Can the strange hiccup feeling go away? I don’t know. But I think we can try.

We can try to be better.
We can try to listen to understand.
We can try to learn to understand.
We can try and stand on our heads against the wall and eat peanut butter until the hiccups go away.
We can try and find someone who has walked a similar path and is willing to share their perspective.
We can try to be there.

I will never ever find a person who says magic things every time. At the same time, there are many of you who may not know when you were magic for me, but you have been magic before. Multiple times. I have no doubt.

I found some of that in the book I picked up. Strangely, it was as if I was talking to her while I was reading the book. It was a special time and a special book.

You never, ever may know how you impact another person. Or how that connection could transcend into the lives of others, but those impacts are imprinted on all of us, those connections do transcend into our lives and those of others, and we can and do change the world. 

…

I’m doing okay. The transition from intense chemotherapy to less intense immunotherapy has surprised me. Like coming off a spiny ride, but still spinning. And while that was happening, I decided it was time to reconsider my pain management plan. That’s been unexpectedly harder than I imagined. And…and…there’s always something else if I wanted to keep going. And yet, I do my best to choose hope.

The book I read was Between Two Kingdoms by Suleika Jaroud. That is my book suggestion for you all. It will help you be better, understand better, listen better, learn to understand, be there, see a new perspective, and 

And some jams for you:

1. Love Yourself – Betty Who
2. Salt Then Sour Then Sweet – Sara Bareilles, Brandi Carlile
3. Everything is Peaceful Love – Bon Iver (Fun fact, I saw one of his concerts at the Hollywood Bowl; And also saw Spence from Criminal Minds there…I did…I swear)
4. Travelin Soldier – Cody Johnson (I know, I know...the (Dixie) Chicks version is original and incredible AND this one is so good too. Give it a chance!)

You are always welcome to continue to support me on my journey in any way you choose. Some ways you can help me are:

1. Provide me with book suggestions (think historical fiction and nonfiction)
2. Send me mail! (I just found out about this cool website where you can sign up to send and receive postcards (from) around the world, it’s called Postcrossing). 
3. Want to visit the Bay Area?
4. Donate to my GoFundMe to help me pay for my insurance, medications, procedures, parking, transportation, etc. (and THANK YOU to all who have and continue to help in this way)
5. Consider supporting a vendor dedicated to cancer awareness, like DogLove Original Brand

Last little thing before I go....do you believe in signs...I believe in signs...Anyhow, the song that inspired the name of my blog so long ago came on just as I was finishing this up. Magic, people, magic. 

Full Circle

When I was about six years old, and my parents asked me to decide on a color/theme for my room. I choose what most kids would choose: A neon green Christmas room!!!  

Maybe you guessed a pink unicorn room? And you weren’t far off, that was how the bedroom next door to mine was decorated. 

 

Fast forward and I’m now falling asleep in a pastel/muted neon green room. Nothing much to do with Christmas. Well, there are the boho twine star ornaments hanging on my linen ladder. In my defense, however, they go with the décor, so can you really say we’re back to where I started?

 

When I was young, I also spent hours gardening with my mom, sisters, and friends at that old house. And now, after many years I’m back to gardening. Not the same house, but I do live with my sister in the not so loud green “Christmas” room. 

 

Back then, next to gardening, I’d spend significant portions of time in and out of appointments and scans and tests and who knows what the hell else having to do with my health. And what do you know, I”m back at it. 

 

Do you remember, as a kid, when you would go somewhere and you’d fall asleep in the car and wake up the next morning still in the clothes from yesterday? Reminds me of the days when I was going through chemo when I would go to sleep in my clothes and on occasion not change until the next evening. I didn’t have the energy to change. Sometimes my energy was so depleted, I barely managed to eat and shower. 

 

I wish every day to be able to switch that part of to a house full of animals part. 

 

Can you imagine 9 puppies, 3-4 dogs, 3 cats, multiple kittens, mice, salamanders, rabbits, hamsters, the stranger’s dog who would swim down the river and came to our house for a visit all under one roof!?  Oh wait, I forgot to mention my family who took care of all those animals and the neighborhood kids who were in and out of our house too. And that’s probably not even half of the animals and people passing through the doors of my childhood home. 

 

I don’t have the statistics, and for the most part, I don’t want to know them. But I bet the Neuroblastoma and MPNST cancers have similar statistics. And similar facts. But those I can summarize for you. Hard to treat. Best to catch early. Whack-a-mole with what works for each person with regard to some pieces of the puzzle. The treatments themselves are risk factors for developing additional cancers down the road. Genetic markers can be determined, but to some extent we’re not able to determine yet how those affect treatment. Most drugs worth pursuing are still in the trial phase and while it is clear they are helpful, you might not have access to them. You should pursue this course of treatment, but there are no guarantees. Oh, you pursued that course of treatment that was not supposed to work, but it did. 

 

Another thing I know for certain that comes back full circle is that I don’t back down from a challenge and I always put up a fight. 

... 

 

I’ve been reminded recently of how great the medicine of laughter is for me amidst the ups and downs of this full circle journey. And my favorite thing to make me laugh right now is Amy Poehler’s Podcast: Good Hang. Not surprisingly, I laughed almost the entire time when Jack Black was the guest. And I love how there is this part of every episode where Amy asks about what makes her guest laugh. Some memorable ones: early years American Idol auditions where the person auditioning thought they were good and they were not and the Debbie Downer SNL skit with Lindsey Lohan. 

 

My message to you, while some things in life do come full circle. And some of those things can bring us down, I encourage you to chase down something that makes you laugh.

 

…

In the past few months, I’ve stopped chemo and started Immunotherapy. My most recent scans didn’t show significant improvement from the improvement we saw with chemo, but there wasn’t anything trending in the other direction. I’ve had no side effects with the immunotherapy, and I’ve been feeling good and getting stronger. I have scans coming up and we’ll see where I am at then. 

 

You are always welcome to continue to support me on my journey in any way you choose. Some ways you can help me are: 

• Book suggestions (think historical fiction and nonfiction)
• Send me mail! (I just found out about this cool website where you can sign up to send and receive postcards (from) around the world)
• Donate to my GoFundMe to help me pay for my insurance, medications, procedures, parking, transportation, etc. (and THANK YOU to all who have and continue to help in this way)
• Song Suggestions (“Devils in the Canyon” by The Strike is something I like right now)
• Know any good jokes? (Why did the Chicken cross the playground? A: To get to the other slide)
• Consider supporting a vendor dedicated to cancer awareness (Autumn Collection just released *hint*hint*)