We’ll Make It If You Believe

Cancer doesn’t stand a chance now that the Coheed And Cambria family is on Team Hedgehog.

It was a coincidence that we had meet-and-greet tickets to see Coheed And Cambria the night before I started chemo. We’d gotten the tickets months ago. It would be Oscar’s seventh time seeing his favorite band, most of which I’d gone with him, and this was the redo for the tour that we had Vegas tickets . . . in May 2020. We had some making up to do and some extra income to play with, so I insisted he get the upgraded tickets.

When we confirmed the hydra was back we were concerned about what to do with the tickets. It was possible I’d start chemo before the show and might be in too rough of shape to sit in the ADA section. If it came to it, I would have insisted he still go and either sell the other ticket or have someone else go with him. Avoiding either scenario was the only upside of the delayed chemo authorizations.

The concert was wonderful, especially toward the end when I got to dance to “A Disappearing Act” once again, but the show itself was second to what happened before any songs were played.

After we decided what merch we would take home we got in line to meet the band and receive an autograph. I was excited to meet Josh, the drummer. Claudio is fantastic and has magical hair, but every time I see Josh play he seems to be having the time of his life. He’s entertaining to watch and happens to be extremely talented. He’s also the second musician who’s made me forget my own name when asked, not an easy feat. I managed to let him know what I loved about him and apologized for the bugs from last year. It was a surprise to learn that was one of his favorite shows because it was so weird.

We looped back to the end of the line, this time for a photo with the band. I was determined to hold my composure this time and mentally rehearsed what I wanted to say. The practice paid off. Oscar got a picture on his own with them, doing his best to not let his excitement get out of control. Before I joined him for the next shot, I successfully let the band know how much this night meant to us since I was starting chemo the next morning. The photographer got his shot of Oscar and me with the band, and then a shot of me. They let me know how much they wanted nothing but good outcomes and were grateful I could make it.

Oscar and I made our way to a spot as close to the stage as possible and sat on the floor. My legs had been feeling weak most of the day, so I took my moments on the ground when I could get them. We finally met the guys who provided the soundtrack and background of our lives (for example, I walked down the aisle to “2 Is My Favorite 1” ). Suddenly, we heard a concerned person ask us if I was really starting chemo the next day. I thought it was another fan who overheard what I’d told the band. The night elevated when we saw it was Josh himself.

He joined us on the floor (reminded us both how old we were getting when his back complained) and chatted with us about my experience with colon cancer and the latest developments. He offered a hug, and I accepted and can confirm Josh gives Brady-level hugs. I think hugs would have made the pandemic chemo more tolerable. I love that I can get as many hugs as I want this round.

Josh and I share a superpower where we can become instant friends with a total stranger. He took it to heart when I told him to help people get screened for colon cancer, especially if they have a family history of cancer. We swapped stories about the weird things our bodies were doing that had no clear answers for the physicians working with us. He stayed for another 10 or 15 minutes and seemed to forget why he was at that venue until the lights dimmed on the stage, signaling the band was about to come on and perform a song for the VIP ticket holders. Before leaving to join the rest of the band backstage he took down the Team Hedgehog site and again wished all the best for us.

Only after he was gone did Oscar dare to start losing his mind. They say never meet your heroes, but every now and then you find genuinely kind people who happen to be famous.

Josh, if you happen to read this, thank you again for becoming one of our favorite people and letting us know the whole band has our back. Also, tell Claudio I said, “Hello, goodbye, hello, goodbye.”

One of Oscar’s friends gave us his season pass tickets to a Real Salt Lake game two days before I started chemo, so we made a weekend of it. The game was great, even though the ref used a Magic 8 Ball to decide when to use his whistle. I know we were on the jumbotron the first time the crowd sang “Believe”, the team’s battle hymn. Thanks to Taylor for adding to our pre-chemo shenanigans.

The Truce Is Broken

The most traumatic moment for everyone was the week of the cardiac arrests. However, I still have no memory of it and can only empathize with everyone else. My traumatic moment was the second week of taking the chemo pills and being unable to keep them down, along with my regular medications, knowing each pink pill was about $250 and not covered by insurance because a new year had started and my deductible hadn’t been met, all while not being able to eat anything because 95% of food, drinks, and even most bottled waters tasted like dirt, leaving me weak physically and mentally depressed and anxious (something my regular meds normally help with), and if I can’t keep down these pills the chemo can’t eliminate the last of the cancer cells and it’s game over.

That I remember vividly, to the point where I get nauseous any time I go to pay the bill for those pills more than 2 years later. The best I can do to cope with the missing week is to use my imagination. I was familiar with the idea of anthropomorphizing or personifying an illness. A therapist I worked with introduced me to Internal Family Systems which worked similarly only by taking different pieces of my personality and emotions and making them a character. If you’ve seen Pixar’s “Inside”, you’ve seen this in action.

Using IFS, I wrote down the perspective and response of each piece of what happened that week. For example, Humor had a stand-up routine of how much he could use a vacation, one with room service and constant attention to his every need. Then the audience would interrupt and remind him he enjoyed that very thing.

I made up a new story about that week from my own perspective, adding details Oscar gave me about my medical state compared to the kind of TV I wanted to watch.

The cancer and I had a truce in place. We both were in rough shape and nearly scored a tie when that embolism knocked us out. If I lost, the cancer would by default, so we came up with a plan to both survive. We built a basic framework for the information the doctors needed in order to pause treatment (Paw Patrol). Then we tested multiple strategies and refined the message we wanted to send (WWE, cut a promo). Finally, time to execute, with emphasis on the cute. I was physically feeling twice as old and practiced my new skills to scheme and pull the Respect Your Elders card on everyone (Golden Girls). It worked. Treatment was paused while I recovered. The doctors fell for our combo attack on April 28th and gave me No Evidence of Disease status.

Two years, four months, and 13 days after NED-Day, I realized it was too good to be true. I was naive to think cancer would wait until I was much older to return. That was the deal. It would back off for a few more decades, then I let it return to grow as large and stay as long as it likes. Luckily, I knew its Achilles heel and left an undercover spy behind.

While we were planning, the cancer let me in on its secret. It had a gene that leaves nothing but false negatives on blood tests. The carcinoembryonic antigen, or CEA marker, is always checked for, but the gene would fudge the numbers on the cancer ledgers. One of the first tests done in May 2020 was for these ledgers which included how many resources were being used for each cell. All blood tests for the CEA marker have been negative. This is why our plan was so effective and led to NED-Day.

One day, my body received an SOS. It was a warning, too short for clarity, but vague enough to remind me of a stat that was as steady as my blood pressure. My fellow cancer Avengers . . . and Rachel had lost a couple members recently, some had thought their nemesis defeated and were back at it, and some were dealing with the supervillain version. My scanxiety was higher than usual with the idea that I’d no longer be cheering them on like a sidekick. When my oncologist gave me the all-clear from the August 18th ride through the magnetic donut and blood tests, I let him in on the cancer’s secret.

The younger cancer cells are used to remaining hidden automatically because of the truce, so they’re sloppy about where they set up operations. I thought the spot was scar tissue from strep, pneumonia, and other ongoing super colds, but my oncologist knew it was prime real estate for colon cancer. He’d been watching that particular lymph node after NED-Day and saw it had increased in the last six months.

We set up a sting operation where all of the cells that make up ME go into rest mode. A big shipment of sugar water laced with radiation that goes undetected is released throughout my bloodstream. The greedy younger cancer cells take in all they can shove into their warehouse. Like Batman tech, the sugar water sends out signals when I’m put through the magnetic donut. The lymph node in my trachea lights up like Las Vegas at midnight. The truce ends.

I never gave cancer my secret. I knew all the resources I’d have next time. The tech and medicines would be better. I’d be physically and mentally trained to be a tougher opponent. When it came back, it wouldn’t stand a chance. I don’t feel bad for the cancer. It was planning my defeat all along. It just got caught. F&#% cancer.

We’ve done additional tests to confirm it’s just the one lymph node and verified it’s genetically identical to the cancer we found in 2020. The term for it is metastatic colon cancer, meaning it’s moved to another area. It’s not in the upper part of my trachea by my vocal cords, so I’m in less danger of losing my voice. We caught it before it grew as out of control as it was in October 2020. I’ve been on an LOA for a week since dealing with escalated calls from customers upset about a small crack in their vanity is not something I can handle in a healthy way and still keep my job. We have plans on using the Ood ball method for chemo treatment. Once we have the authorization from my insurance I’ll have a start date and a rough schedule for 6 months of chemo and possibly radiation treatment afterward.

I’m optimistic. We’ve already gone through the worst-case scenario with the first round. This time I have better resources, more experience, and less of a worldwide crisis to contend with. Oscar and I will have more help and options for our emotional, physical, and mental health. I’ve kept most of the supplies from before. It doesn’t mean I’m not scared. I’m doing what I can to be ready if the worst-case scenario does strike again. Anger is in full Valkyrie mode, especially if I have to lose my hair a second time. I still have Humor, Creativity, and Curiosity on my side. I’m already referring to the situation as National Lampoon’s Tracheal Vacation.

The only question I have is . . . who’s up for being part of Team Hedgehog this time?

The Story So Far

Previously on Team Hedgehog:

I managed to survive complications from the first two rounds of chemo, specifically two cardiac arrests and a seizure within 24 hours. The third round of chemo with the “Ood ball” was easier on my body, as was having a port implanted for accessing my veins.  My oncologist prioritized recovery before deciding if continuing chemo would be necessary. My homework was physical therapy to learn how to walk and stand up on my own again, and to gain back the 20 lbs of weight I’d lost before the cardiac arrests.  6 weeks later, we tested my blood and performed a CT scan. There was no sign of cancer. April 28th, 2021 was declared my No Evidence of Disease date.

For the last two and a half years I’ve been in “surveillance mode” with CT scans and blood tests every 3 to 6 months. I was on blood thinners for a year before getting the all-clear on my heart. I got permission from my doctor to use a gym’s pool to pick up where physical therapy had left off. I was still relying on a cane and the idea popped into my head one day. It was safer to gradually stand up on the steps with a handrail nearby and fall into the shallow end. After about a month, I was a bit weak but no longer needed my cane.

Fast forward to August 2023. I’d gotten a promotion in March that I’d been working towards since I started in 2017. I’d won four contests for the Halloween costumes I made my family which led me to build my own Dreambox. It’s functional at this point and only the cosmetic details are left. We took a trip out to Vernal with the boys. I managed to make the full hike to see the petroglyphs. I finally got my Office Space moment with that ancient bathroom scale. We immersed ourselves in Van Gogh’s art. Move #30 happened in January when I felt I was ready for it. (It was only four blocks away.) We survived the most snow I’ve seen in my life, including three Januaries.

I found a bald spot in my hair. I experimented with the pixie cut. I gained the majority of it back.

Oscar and I returned to our concert life in spectacular fashion. I’ll leave just the highlights. I caught the guitarist’s pick when we saw The Used. We took a road trip out to California and saw Rammstein, the most expensive fireworks show I’ve ever been to. I saw Alanis Morrisette and Matchbox 20 with my mom, two different shows that were both amazing. Rammstein was overthrown as the biggest concert of my life when we went to the Sick New World Festival in May. High school Stephanie was losing her mind the entire day. It was Oscar’s first time seeing Korn, and it was an honor to be in a crowd worthy of their Adidas gear. It was a dream come true for us both to see System Of A Down. After first seeing the Deftones in 2006 I finally reached my goal of seeing them seven times. I celebrated with the best merch ever and got my first tattoo on the body art bus between bands. This Sunday we’re seeing Coheed & Cambria, this time with meet-and-greet passes.

Silas the pug is still around. He’s definitely feeling like an old man at 14 years old. He’s in diapers, has prescription dog food for his kidneys, his rear legs drag, he’s lost most of his sense of smell (unless it’s popcorn), he’s for sure deaf . . . but he’s still sassy. He has a wheelchair so we can still go on walks. I still get in trouble if I leave the house for more than an hour.

In June 2021, Oscar and I brought home a sweet, playful, talkative, and extremely well-behaved black kitten named Ruger. Based on his coloring and behavior, he’s known as a Bombay cat. Also known as a parlor panther, void boi, and anime cat. He’s Oscar’s cat and will let Oscar hold him like a baby, but he only plays games with me such as fetch and creep’n’sneak.

Both critters are spoiled rotten, of course.

Things have been going well for us. I’ve been crossing things off my Still Alive List and less cautious about why we shouldn’t do something big like drive to California for a concert. The hydra has always been in the back of my mind. I just thought it would wait until I was much older before rearing its ugly heads again.

You’ll Want To See This

I promise I’m excited. It’s been slowly sinking in. We’ve done some celebrating, but I seriously want to do a big party. If it’ll be better to wait for later in the summer after more people have had their chance to get their vaccine, then I’ll wait. Need to find a way to purchase Oscar’s award without him knowing.

We should book them for the party.
The pug celebrating with a new treat.

Kick Start My Heart . . . Twice

Xenomorph? More like Zenomorph.

I’ve purchased a few things from this shop. There are buddhas for every fandom. Go check out muckychris.com to see all the amazingly sacriligious designs. Each one is $10 and they are two inches wide at the base.

What I woke up to a week after the heart attacks.

This is where they put a line through to break up the blood clot that caused the heart attacks. A clot initially started in my leg. Part of it broke off and made it’s way to my heart. This can happen for people who are inactive. Considering the lack of strength I had at the time, I wasn’t exactly running marathons, so I’m not surprised a clot developed.

The bruise is gone. There’s a lump leftover that I’m hoping disappears soon. It’s not as painful as it used to be, but it’s going to be awkward when I’m in a swimsuit for water aerobics.

The pug refused to let me finish my leg exercises. I have no idea what he was pouting over.

Ood Balls and A Doctor Who Spoiler

The chemo ball when it’s first attached compared to the Slave Ood in Doctor Who and a free Ood holding it’s brain like they naturally do. All hooked up and enjoying the much easier infusion. I also understand if you read it “odd” ball instead of “Ood” ball.

The nasty bruise from the second and very poor attempt to access a vein. Me all hooked up to the port with what looked like a large thumb tack in the “button” under my skin.

Not a Silas the pug photo, but a pug related one. The Oatmeal has been a favorite source of laughter lately. This is from his new game called Kitty Letter. Go checkout both.

Change Of Plans

Toastmasters, please go easy with the ah counting.

My veins have been poked and invaded so much lately that they no longer like to behave. One of the nurses was called in to work her magic. She managed to get one in my hand and got me through it without any pain. Kudos to Rebecca in Huntsman Radiology! They gave me the option of trying a third time for a good vein, or going directly into my jugular vein. The second option sounded terrifying, and I’m glad she pulled it off so well.

All the red/orange is just iodine and all that fun stuff.

The purple spot shows where they went into my neck to run the line directly to my heart. There’s a small bump in the green one where my port injection line is. This is where they’ll attach any IV lines from now on. The large scar is where the port was set up. After all this is done, I’m planning on having my hedgehog tattoo by the large scar.

It wouldn’t be a Team Hedgehog post without the pug getting involved. Somehow these two both always find a way to fall asleep next to me.