Team Hedgehog

The 9 Levels Of Transit

I’ve been in occupational therapy, and it’s going well. My therapist glanced at the routes offered to get me back home and suggested one. It was a suggestion, not an assignment. I came back the next week with this report.

It took five hours to leave Sugarhouse and get home to West Haven after occupational therapy. I must have missed something life-altering that the fates weren’t ready to reveal. I decided to try a new route the transit app recommended: two vehicles and less walking distance than the three rides I’ve been accustomed to.

I left the clinic feeling somewhat shaky on my feet and with a lingering spikiness on my hands. I wasn’t worried as this is a common occurrence after my appointments. I’d spent an hour ensuring everything was charged; phone, headphones, laptop, and myself with more confidence than when I arrived. I’ve experienced the hard way how miserable the trip can be when at least one of these four is fully drained before arriving at the final station. Not this time, Satan!

Half a block from the clinic, I crossed the street at the light and noticed a few painted rocks on the ground. Oh! Supportive messages that will make my day better? I stepped closer for a better view and one side of my shoe tried walking on sunshine. I fell forward, perfectly in line with the sidewalk, and my knee and palm hit hardest. My back cushioned my laptop’s fall. The soda bottle in one hand and my phone in the other were suddenly not. They were hanging out with my headphones three feet ahead.

After confirming there was no blood and no twisted joints, I stood and looked at where my foot had gone wrong. The soil next to the curb and the sidewalk had faced a miniature landslide. Maybe a larger painted rock used to be there. I think the paintings outgrow their rock and move on to a new one. A rock paint farmer must have noticed the empty one and brought it home for cultivation.

Nothing but my self-esteem lost health points, so I put my podcast back on and finished walking the next block to the first bus stop to wait for the 213 as instructed by the app. Goldfish memory had me convinced I screwed up every time I let the 21 bus with the same destination pass me. Three stifled panics later the 213 showed up, and the app confirmed this time it was the one I wanted.

Soon the app notifies me my stop is next, and my hand cheerfully tugs the signal cord. It leads me to the next stop, kitty-corner from where the 213 let me out. The map and stop list on the app indicate the 455 will take me north on a meandering but uneventful ride, depositing me a block away from my apartment door in about two hours. Two buses drive by testing my ability to see 455 is not on their displays, and I ace it. The third follows the real-time dot on the app and the number on the bus confirms it.

I find a spot in the back to camp out for an hour and casually watch my dot follow the 455 route on the app. The timeline must have had an anomaly because the last stop on the bus never left Salt Lake. The driver let me know I’d gotten on the 4. Where did the 55 go?! He points me to a bus across the street that will get me on track.

Oscar calls to check in with me. I’m convinced the new bus will leave any minute, and maybe dodging cars this close to the intersection instead of using the crosswalk is a good idea. I went the safe way and talked him out of leaving work early to get me to our apartment. I needed to prove to myself I’m an adult and can get out of this mess.

The bus across the street was another 4. The app recommended waiting for the 9 to reach the Frontrunner, the commuter train that does the heavy lifting for each of my trips between West Haven and Salt Lake City. 4 had failed me, and part of me was sure riding it again would cause a glitch in the Matrix. 9 was complicated but seemed possible. The 4s must have been cloning themselves; a third one appeared behind 4 number two.

I debated the Vegas odds on a quartet of 4s while waiting with a few other people for the 9. We became concerned that the 9 would miss us due to the pair of 4s arranged like straight Tetris blocks that were not part of a successful strategy. A glance at the app said not to worry, it was behind by three minutes. Three minutes later we see a bus approaching, and it turns into the other road to leave us abandoned! Oh, no, that’s not the 9. Phew! Two minutes later the 9 arrives, victorious in escaping a pod of other buses blocking its way. Once more I settle in, getting a tour of an unfamiliar Salt Lake neighborhood.

I checked the app periodically to see if a shorter route exists. A blip on the radar! A light rail station four blocks ahead. I can ride the 9 for three of them and easily hop onto the green line for a skip to the Frontrunner and the jump to my eventual station. I got so excited that I nearly forgot my laptop while tensing my legs for the speed walk I’d need them to do. I’m glad that brain cell was doing its job.

The light rail crossing gates were blocking traffic ahead of the green line before I made it to the platform. I spared a second to check the train’s distance would not result in my deletion before dashing over the tracks. I gathered at the edge of the small crowd, started to take a breath of relief, and nearly choked on it as the train slithered to the farthest end of the platform. The green beast lay still long enough for me to reach the doors before closing them cruelly in my face. It ignored how quickly I smashed that “open door” button and lumbered off. It turns out the 9’s five-minute delay would have given me a chance to sit on the bench before the green monster arrived.

Thanks to having a memory wipe nearly every half hour, I forgot what initially tried to prevent a cannon event disaster. The adrenaline numbed any indication from my knee or palm that there was an origin to this suffering. The transit Oracle must have laughed when it said the next option would be over an hour away. It omitted the entrance of my next hero, the blue line. The speakers confirmed that it was safe to come aboard, and I stumbled in my eagerness to find a seat.

The speakers reassured me at each stop that the bench signs outside matched the signs over my shoulder. The unconcerned faces around me signaled all was well. I envied the guy who dozed peacefully in his seat. Salt Lake Central Station was the ultimate point on the timeline, but I couldn’t breathe easier until I was there myself.

The familiar Frontrunner station seemed to say “welcome back” with its suitcases and trunks embedded in boulders. I didn’t bother with the transit app since it had done me dirty. The northbound Frontrunner arrived and ushered me in. I climbed to the upper level where my laptop and I could enjoy a respite while my phone charged. The woman using the other half of the table announced through 95% of the stickers on her laptop that she was a musical theater kid. Choir geek me recognized a potential kinship, but I was trying to focus on making some progress on a research essay two days past promised. Three more paragraphs landed smoothly on my screen before the inevitable happened. My social anxiety strategy had me talking to a stranger.

I stayed with the topic of musicals and let my past enjoyment of them gradually replace my past travel fiascos. Anastasia no longer has Rasputin as the villain, and the ending is different? The VHS was on repeat when I was a kid. You like Newsies and The Sound of Music? They were staples for substitute days; I learned how they ended two years ago. The rebellious spirit of Matilda sounds like it was a wonderful experience for you! I need to see Anastasia. You would love Disney’s Hunchback. It would be epic on Broadway.

The TVA must have taken a lunch break and left me with a false sense of security because the Layton station went from 4th place to last as soon as they got back. Old Reliable was suddenly the only train and was NOT continuing to Ogden. Two buses were waiting for any passengers not headed south towards Salt Lake City and would be taking on the other stops until a full-time replacement could be lined up on the tracks. If the app oracle knew about the delay, it did not believe I was worthy of the information. Passengers scrambled to stash the belongings they thought would be at rest for another twenty minutes.

My musically inclined acquaintance and I stuck close to each other. My mind must have needed something comforting now that chaos returned because it latched onto the musical I’ve seen most and never tired of. Gene Wilder as Willy Wonka and the variations that came after it insulated us until we came upon the scene of the decommissioned Frontrunner. Some fool hadn’t stopped their car before the tracks as it was passing. The train won the fight, but one set of passenger doors was buckled in from the impact. I can’t imagine the fear of the passengers near the door, nor the driver’s state. Still, I took a photo, knowing how unbelievable it was as an addition to my odyssey.

We found open seats close to each other among a bus of lesser-known strangers. I became more sure of the possibility that this was somehow because I’d rolled a natural one on a perception check. Once the bus was moving, I gave the concept a voice and gathered data.

“What’s a movie where multiple obstacles come up to prevent the main character from getting to their goal because of potential consequences of their success?” The other sardines suggested Groundhog Day, Speed (fitting), The Truman Show, and more. I apologized because I irrationally felt like I was that main character. I shared some candy with the man next to me as a formal apology. Humor as a coping mechanism is not limited to cancer survivors, and hilarity ensued.

Something above us made a horrible high-pitched drone. The choir geek identified it as a tritone, and I became determined to think of a song to go with it. During a lull in the sound, it returned with the isolated lower note, confirming I was hearing two that made so much dissonance, like the soundtrack to our bus ride. “Looking Out My Back Door” by CCR was the first and likely not the best, but singing it to myself made the dissonant demon more of a duet.

Our bus reached Roy station. I said goodbye to my latest friend and predictably forgot her name by the time I settled into a bench to wait for the shuttle that would be my concluding voyage. The second bus arrived, and I cheered them on. One passenger wasn’t sure which of the two shuttles to take, and I made a mistake.

Like someone who thinks she can change the bad boy because they’re in love, I opened the transit app. He confirmed the address he needed to get to, and the first shuttle driver let him know it would be the next one. I believed the first shuttle was the same one that got me the last two miles, and it took two miles in the wrong direction to convince me otherwise. Staying on that bus meant I wouldn’t be at Hedgehog Headquarters for another hour at best.

I was over the tests and trials. I got off at the next stop as if that was my plan. I faced my fear and admitted the tools I have are not sufficient to counter the brain damage from chemo. My body isn’t physically or mentally ready for complicated trips or new routes. So I called in one more ally to guarantee the 9th leg would be the last. I ordered an Uber.

The driver got a 30-second summary of the last five hours. He suggested Trains, Planes, and Automobiles. I’ve never seen it, but hearing what John Candy’s character struggles with is a continuation of Home Alone, thus both were saved to the IMDB list.

I made it to my haven three hours later than I’d planned. Poor Ghost had been in his kennel that much longer. I was looking forward to a solid nap. I don’t blame Ghost for peeing on my softest blanket. I can respect an act of protest.

The satisfaction felt in dropping into the chat of Refashioned Hippie’s Tuesday evening YouTube stream washed over me like a bucket of blue Gatorade. I laughed so hard it toned my jawline and gave my abs a workout. There’s something special about contributing Slitherhen to a Harry Clucker story. My years spent observing Oscar’s Call Of Duty games culminated in backseat gaming her through Prop Hunt. Her friends make the chat a lovely place for entendres of all levels and compassion for those in need. By the end of her stream I generated a surplus of endorphins to last the week.

My hands have felt a low and steady spikiness through the day. I had to write down my anticlimactic adventure despite how annoyed my fingertips were with me. The rest of my body will be demanding an apology tomorrow, so why not add my skin’s opinion to the list of grievances? I thought it would be much shorter; that’s what I get for thinking. I didn’t realize the extent of the day’s events could fill up four pages.

Like the rock I read earlier said:
When it rains, look for rainbows.
When it’s dark, look for stars.

Yeah, the saying doesn’t fit, but the rock was the first stumbling block in the journey and deserves to return to the beginning.

Testing, Testing, Is This Thing Working?

I’m trying to do this whole thing using speech to text, because that’s something I have to get used to if I’m going to use technology more. It’s awkward because my writing voice is better than my speaking voice. I can take time with my writing to find the right words, cross something out and add something better back in, and let the words flow naturally. I’ve had to practice most of my life to speak decently enough to be relatively understood. I’ve picked up skills on how to give speeches or long talks in recent years; however, I still have begun those speeches and talks in some form of text whether writing or typed out. See I would go back and change that to read in some form of writing. But you can’t do that when you’re speaking and that’s why I haven’t made any updates on my cancer block ( another typo that should read b l o g and (

I’m just starting a

I tried to start a new p a r a graph and it started a new one. This is going to be tricky.

In May I was granted full Social Security disability status. It’s frustrating because I am just disabled enough to not be able to work and just functional enough to feel like I’m not disabled. How’s of October, as of October I’ve been working on getting my capabilities and limitations updated to determine if I continue using my long-term disability insurance from my work or remove it and have my Social Security disability insurance increased to reflect no additional income. The medical system is so overwhelmed lately that I couldn’t see my primary physician to begin testing until middle of January 2025, roughly 2 months out. I was lucky. Somebody else canceled, and I got the appointment a month sooner than my initial date.

That appointment was today. The 11th of December.

I’ve gotten so used to what I can do with daily adjustments that going through the majority of my body’s limitations within an hour was so deflating. I can tell people what limitations are, but having someone witness them in real time is a reminder, a very immediate reminder that my body is still broken. Granted, it’s still healing, and it’s going to take a long time to heal. I’d rather have a broken but healing body sin ( sin was a verbal typo, but in Spanish is very appropriate) without cancer complicating things.

That’s part of the good news. I have NED status. I have a local charity looking into changing my radiation tattoos into something more meaningful to celebrate once the holidays are over. I’ll cover other ways I’m celebrated or celebrating later, but for now I’m not doing okay with how this morning went.

I forgot the word for camel. One part of the cognitive test was images of three animals on their profiles and all I had to do was say what animal each was. I’m not kid who watched all of the animal shows and can’t get enough of good animal shows. ( The reality shows lately do not count. They don’t have enough animal in them. Clo ) I was so obsessed that I was the kid who wanted to be a vet, volunteered at a local vet to experience the environment and witness what the animals go through and join in in caring for them and seeing the worst of it but also the best of it, and later in life even tried going back to school to start seeing if I could understand enough medical terms and specifics needed to be a vet. At that point I was nowhere near the idea that I was going to be the vet at the zoo, but I would have been happy to be an assistant at a local place who also covered the front desk. Because of other issues that it’s going dinner pan out either. Trying that again, because of other issues that schooling didn’t pan out either.

But I knew the word camel back then. I recognized the word for lion and rhino, so two out of three, yay?

I was asked what date it was. I knew I was a Wednesday and it was December and it was 2024, but I wasn’t sure if it was between the 12th and the 17th, because I knew Christmas was coming up. I have enough plant regularly that I can most of the time keep track of the days of the week such as Sunday morning Monday evening, Thursday evening, for any morning… Friday morning. My calendar has had reminders set up from years ago indicating which weekends the boys are over, but I always have to check the date. I was usually relatively close, maybe one day off, but…. I guess I have a superpower from chemo that lets me travel a week into the future and nobody else knows. Including me.

The sad part is I can’t remember most of the cognitive tests even though it was less than 24 hours ago. There was one where I was instructed to say as many words that I could think of that started with the letter f. I could not include names or numbers. Of course I clarified if swear words were allowed, because I am sure the letter was chosen at random. I could think of plenty of longer words including frustrated but also fantastic, futuristic, fortuitous. I also said four but quickly specified not the number. The speech to text is convinced I said four. The test only took a minute, I think, and I’m sure I repeated at least a couple. I couldn’t tell you what words were repeated and that bothers me. Even speaking without writing something down ahead of time I wouldn’t have repeated significant words like that. There are filler words I’ve used frequently when talking to someone, and maybe when I was really excited about something and felt only one word could describe what I was talking about then I would repeat that word. But, not when I could choose any word I wanted and take as much time as I wanted.

The memory issues are one thing. I had memory issues from the first round and it took some time but eventually they for the most part recovered and didn’t affect daily life. I’m coming up on a year and still dealing with the same extent of chemo brain. Someone can double check me but I don’t think it was this bad last time. I’m pretty sure I was back to work this time. But physically I was doing better on the recovery end, for the most part. Yes it was more damaging in significant ways and in such short periods of time, but I healed up much quicker back then. This time, I made it through all 12 rounds of chemo and 10 rounds of radiation. In other words I successfully completed treatment. So that’s one thing I’m celebrating, another part of the good news.

Physically, I feel like every time I make some progress whether that’s strength or stamina or sensation sensitivity touch whatever you want to call the last one dealing with neuropathy, within days it’s like it never happened. I spent so much time in the summer in the pool, because it’s me where else would I be in the summer, and did make a lot of progress stamina wise strengths and even energy. Then winter hit. Lots of other things hit after the pool closed and before winter hit, but that’s another issue.

In March I got new shoes to go to a concert in, and I realized before getting the shoes that all of my other ones were not stable izing. I would go for a walk a mile away and look like I was drunk. I would have to concentrate in order to keep my feet walking relatively straight. After trying on four pairs of shoes, the only ones I felt stable in were a pair of running shoes. They have wider base more cushion, and help keep motivation… No momentum when you are lifting your foot back up to take another step. They worked great for the concert and have been wonderful the rest of the year. But they’re the only shoes that do help me. I’m trying to find a pair of nicer shoes or boots that don’t look like something that just get used to the gym. So far no luck.

Anyway, all that to say that the other part of the initial testing this morning included physical… Tests. Can’t think of another word that I want to use. My doctor checks what I could do with shoes and then had me remove them. I used to dance easily ( poorly to some people’s opinion ) and do yoga even when my strength wasn’t that great and handle standing on one foot for a long minute. I would walk in a straight line toe to toe, sorry toe to heal, for fun and especially on curbs and especially especially to compete with my kids. I couldn’t do that without help today. Even after taking my socks off, when I thought he’d asked me to because that would help my feet better grips floor, My I didn’t have the balance or strength or it’s a new word sense of position in space, to stand on one leg for a second. I can still touch my fingers to my nose with no problem, so that’s a win. My doctor did confirm when a person’s nerves are still healing such as from neuropathy damage, it can affect the body’s sense of position and muscle reaction? Adjustment?

I still dance a little bit, mostly when doing dishes. I have the counter to grab if for some strange reason I lose my balance. I’ll do some stretches while standing in my room, but I have my bed to fall on. I used to dance a lot in the summer. But that was in the pool. I’ve always felt I can do anything in the water.

I danced a lot in the concert in March, but I had to sit out half of the bands. I planned on regulating how much energy I spent on each one, but there was one group I couldn’t help it and lost control because their music is just that good. So I missed out on at least a few I looked forward to, and probably won’t go to any all day festivals until I get all of my strength back.

The last concert I went to I was planning on keeping a spot on the side where I could easily sit and not worry about getting stepped on on accident if I needed to take a break. Oscar managed to get me access to the ADA section. By this time, I’d been granted federal disability status. This is one of those moments I don’t feel disabled enough and had to remind myself that’s what these seats are for, so people with limitations like mine can still enjoy the show. That’s where I met the wonderful people who run ink against cancer. I don’t know how to capitalize the first letter of a word yet and speech to text. I’m so glad Oscar got me those spots because that was the last some 41 tour, and even though I wasn’t in the middle of the pit like I imagined I’d be when we first got the tickets, I still had the energy at the end of the night to sing and dance in my chair and headbang along with Oscar and be a part of such a good crowd. “Fat lip” should never be heard sitting on the side.

There’s more I’m still struggling with, but I’ve been working on this for an hour and I need to go to sleep. So I’m not going to edit this before posting it. Otherwise it’s going to be harder to get used to and someone out there might think I’m dead or in a coma or I don’t know what. So for that person and for my sake this is a new capability. I am going to practice it like a new capability. And that is another piece of good news.

Radiation Prep and Saying I Miss You

We finally have progress on my treatment. I was assigned to the control group for the clinical trial which receives no radiation therapy and a continuation of chemo. It would mean seven or eight rounds and another two to three months. I decided to drop out of the trial and go with radiation treatments in half as much time. I’m anxious to get back to my life.

On February 26ᵗʰ, I met with the radiation oncology team to prepare. We created a mold to fit my upper body and head that I lay in and added four freckle-sized tattoos. These allow the team to line me up in the same position every time. The mold starts out like a small waterbed. I lay on it on the CT scan “bed” while two people held and taped it up. The warm liquid and chemicals inside solidify due to the heat. It’s similar to insulation foam that’s sprayed in houses. Once the mold was ready they gave me my second through fifth tattoos that will help line me up with lasers for additional fine-tuning of my position. I have one on my chest, one just above my belly button, and one on each side. I might turn them into other tattoos later. The nurse suggested constellations. My first thought was the four compass points. We’ll see.

Next, they did a CT scan of my torso. They’ll use this scan to map out ten different paths the radiation machine will follow and the exact location and amounts of radiation applied to the cancer cells. My first treatment is on March 11th. In the meantime, the radiation oncology team will be triple-checking the computer’s plan and making any adjustments. I’ll go for a treatment every weekday for two weeks. The first visit will include a practice run to confirm no kinks need to be worked out, but each treatment appointment after will take less than an hour.

I probably won’t feel side effects until the second week. The biggest one will likely be fatigue, which I’m already dealing with from chemo. The others will be related to dry and sensitive skin around the machine’s target area. I’m not sure if it will be just my chest or if my sides and back could be affected, too. I’ll have to be very careful with my skin. There’s a five percent chance that my throat could become sore and make swallowing painful. After five months of chemo side effects, bring it on.

If you’re curious, I found two videos that explain how it works. This one and this one. There are different types of radiation, and mine is either proton or photon radiation. I’ll double-check which one it is.

In other news, Oscar starts his new job on the 4th. Part of his training will have him in Houston for a week. I’ll be getting most of ‘my treatments without him, so I’ll be leaning on Team Hedgehog more than usual. I’m not worried. I’m just happy his job search is over. It does mean he’s commuting to work again. We’ve been lucky to be working from home together for almost four years. I’ll probably put on Street Fighter Lets Plays in the background to make it less eerie. I’m excited for him and proud of how he never gave up or settled for a position he was not enthusiastic about. I just hope this new company is good to him.

Now that we know he’ll have a regular income again, we can finish settling into our new apartment. My craft supplies have been in boxes since my DIY cabinet doesn’t move well on the thick carpet. I bought some tempered glass chair mats to go under it, and the casters glide just as smoothly as when they were on hardwood flooring. I love how good it looks so far with my supplies arranged on the cabinet shelves. So much better than when they were all in drawers or boxes.

I also got a new bird feeder to hang over our patio. It was something that caught my eye when Rachel and I last did some window shopping. She texted me that night saying she was loaded. I bet it would have been a chemo shopping spree if the circumstances were slightly different. I could tell things were not going to get better for her with the way she would suddenly not remember what she was talking about, or how the conversation would bounce around so much in a short time. I don’t know if she saw her Chiefs win. The last time I heard from her was before halftime. I hope she got to celebrate. A few days later she died, just as she arrived at hospice.

I haven’t gotten the… nerve? guts? strength?… to watch the footage of her funeral. I still haven’t watched Roxy’s either, even though it’s the first tab on my phone’s browser. It hurts so much more losing Rachel. She was my best friend among the other survivors. I get the feeling she was a lot of people’s best friend. I wish her cancer would have given us one more year with her, or at least seven months. We were going to the Sites and Insights retreat in Denver this September. It would have been the first time seeing each other in person.

A nickname from Rachel is a major honor. She called me Jonesy after the cat in the Alien movies. She loved those. I’m not sure (or I can’t remember) how I earned the nickname. Maybe it was related to one of my chemo brain shopping moments when I surprised her with a Budha Xenomorph.

She loved my artwork and gave me the confidence to consider selling crafts. I turned a favorite comic strip of hers into a large plaque and shipped it clear out to Missouri. It made her so happy that she cried. So there are two items I’ve contributed to the eclectic and fantastic collection that filled her room. I can’t help but wonder what her mom will do with all of them. Will Lucy go to the retreat in her place? I hope so. I’d love to give her a hug for taking such wonderful care of Rachel.

Rachel probably saved my life, or at least extended it. Learning Rachel’s cancer had spread so severely to her brain was one of the four factors that sent alarms up during my routine CT scan in August.

If I had to pick a favorite moment, it was when she asked what Kale was. She’d bought $45 of vegetables while shopping with chemo brain. She hates vegetables. She bought Kale without knowing what it was. She felt bad because it caused her account to go negative, so she couldn’t afford a gift for me. It made me laugh so hard, which was a gift in itself.

She was about the same age as my mom but felt like a slightly older sister. She was a softie, sassy, and so punk rock. And now she’s gone. I’m going to win this round for her, and then I’m going to make so many wonderful things for strangers that will make them smile and maybe cry. Colon cancer brought her into my life, and I’m grateful for that, but I think Rachel said it best.

Newsworthy

The Good News

The second attempt for my CT scan was problem-free. The results show the lymph node shrunk again from 1.4 cm to 1 cm. The oncologist says ideally it would be .5cm, and it seems like we’re on track to reach that goal. Those kinds of results keep me optimistic when chemo side effects are making life difficult.

The Other Good News

We’re fully moved into our new apartment. I’m grateful that everything was boxed up in time for the movers. The guys at Atlas Moving Company took care of us for the second year in a row. Not only did my grandpa’s desk make it safely, but my craft cabinet also arrived in one piece. I can confirm the caster wheels work just fine after seeing them wheel it out of the old room and into the hallway.

Now my energy and strength are going towards unpacking. I’ve left Oscar in charge of the kitchen since he’s the primary cook. I’ve put all my unread books on a shelf. Yeah, there are enough for a short bookshelf. The box they were in had been my temporary nightstand. I know I have a problem, but there are worse problems to have.

The Rough News

Oscar’s employer (who shall remain nameless) laid off multiple employees, including him. I won’t go into details because I promised not to. They at least gave him a severance that will keep us afloat for about six weeks. I’ve told him he can use the time to make sure I’m okay if he wants to. Or just to take a break since he’s had so much on his shoulders. He’s been applying for new positions since day one. I hope whichever company he joins next will be understanding and flexible so he can continue taking me to my treatments. Part of me worries that was the reason he was one of the group let go.

The Potentially Good News

I was scheduled for chemo on the 29ᵗʰ, but I’d developed a cold the week before. I’d gone to the clinic the day after coughing up bright red flecks of blood which only happened once. We confirmed it wasn’t strep, the flu, or Covid. My symptoms were still active enough that my oncologist decided to hold off on round nine. He let me know my chemo treatments would no longer include the Ood ball with the oxaliplatin, which is great since it’s the culprit causing my neuropathy.

Right now my fingertips feel like something is constantly squeezing them. My feet are more sensitive when I walk, like the Hans Christian Anderson version of The Little Mermaid, only milder than walking on glass. Thanks to an extended recovery from round eight, I can enjoy iced drinks again. I could only tolerate them the last two days of each recent round. It’s less satisfying leaving a soda on the counter until it’s room temperature.

My oncologist also informed me I qualify for a clinical trial now that I’ve finished so many rounds of chemo. He put in a referral, and we met with the radiologist today. She cleared up any apprehensions and myths about the radiation treatment. The treatment is so pinpoint accurate these days that my vocal cords are a very safe distance away from the tracheal lymph node being targeted. It would also mean I’d get my second tattoo. It would be a very small one, almost like a tiny mole, marking where the radiation calibrates. Maybe if I get brave I’ll get a larger tattoo in the same place.

The trial would mean going to Huntsman in Salt Lake every weekday for about ten days. Each day I’d get a fraction of the total radiation treatment. Before I start treatment I’d get scanned to create a computer model of my chest, neck, and head. The radiation team uses the model to calibrate the exact motions of the radiation machine for each visit. They triple-check the data before bringing me back about three weeks after the initial scan. Chemo treatments could continue while doing radiation, but only in a pill form. I’m not up for trying that method again, so it would put chemo on hold during radiation.

There’s a 50/50 chance I’d be randomly selected, but I’m going to apply. I’m benefitting from research done with other patients, and I’ve been waiting for a chance to pay it forward. The study is trying to see if adding radiation treatment after so many rounds of chemo can improve removing the cancer as well as prolonging survival. It could mean less suffering during treatments and better survival rates for patients who are diagnosed after me. I’m hoping to be in the group with the radiation treatment, but even being in the control group without it will provide valuable data.

The Hardest News

I don’t want to write this, but I definitely don’t want to do a video update. At least this way it will be more cathartic.

Silas was having diarrhea the weekend of the 20th. I think we changed his diaper eight times on Saturday alone. Sunday was especially frustrating because I relied so much on Oscar to help clean the pug, floor, and tub from the mess. I broke down sobbing, saying the pug deserved better care than I could give. Oscar did his best to comfort me. Even Ruger came in concerned and checked on me.

Monday morning we called the vet. They set an appointment for Thursday to check his condition and gave us tips on what to add to his food. By Wednesday morning he seemed to be doing better, but the diarrhea returned that night.

Thursday morning we arrived at Ogden Animal Hospital. I’d contacted our pet insurance and asked what was needed to assist in covering euthanasia costs, in the event of a worst-case scenario. We let the vet tech know his symptoms: confusion about where he was, constant pacing as if his pain meds for his back were no longer working, his inability to gain weight with increased feedings, and recent diarrhea. The only positives in checking if it was time were his still present appetite and continuing to be social and seek out attention. The vet tech took him for further examinations, along with instructions for insurance.

Dr. Steve Lemon, who has been caring for Silas since he was a puppy, came in to let us know it was time. We’d done all we could to make his last years as easy as possible. It wasn’t the news I wanted to hear, but the pug didn’t deserve to struggle anymore just to keep him around. They let us hold him and love on him as long as we wanted before prepping him. I thanked him for the adventure and for all the rough and good times he had with me. Oscar thanked him for letting him be there for the second half of his life and teaching him how to be patient. We assured him he was a very good boy and not to be scared. Silas probably heard none of this since he’s deaf, but I hope the feelings got through.

It felt like forever, but at some point we were ready. Dr. Lemon gave him a painkiller to help him relax. I stroked his head and velvet ears as the last injection was given. Seconds later Dr. Lemon confirmed he was gone. I’m grateful Dr. Lemon got to be the one who helped us let him go. Silas was always his favorite pug since he was the healthiest he had ever seen. No offense to the other pugs.

It took a while before we were ready to leave his body. I don’t think I’d ever be fully ready, but seeing him so still was more difficult. As we left the room another couple was waiting with their cat. The woman saw me with the pug’s leash in my hand and no pet to go with it. She offered me a hug, and I accepted. She reminded me of the Rainbow Bridge.

I didn’t tell her, but I no longer believe in an afterlife. However, if it was up to me, only the best of humans would get to see their beloved pets again. Our pets deserve the best people to take care of them. Everyone else would simply stop existing. If that were the case the world would be a much better place. It would be a place where everyone’s lives allow them to have a pet at least once because good people would also want to take care of other people. It’s a silly idea, but that’s the afterlife I would want if I believed in one.

Half an hour later, as we left IFA to get Ghost a round of vaccines, I realized I was still holding onto the leash. It took some effort to let it go.

Once we were home. I spent most of the day watching my YouTube videos that had the pug. It was while watching his 13th birthday that I noticed he was slowing down. His wheelchair allowed him a little more time to be active. At 14-and-a-half years he was showing signs that it was time, but I was in denial. The idea that I’d lose him while dealing with chemo was especially hard to face, but here we are. I feel guilty for being so selfish, but Oscar reminds me of how well I took care of him.

We get his ashes in an urn in a couple of weeks, along with a blue glass tile featuring his paw print. I want to do something special for him, but I have no idea what.

Ruger has been particularly cuddly every night. I don’t know if he understands that Silas isn’t coming back home. Ghost only knew him for about a month and doesn’t seem affected. I’m glad to have both critters.

Brady was right. They do help with grieving a pet. It’s hard knowing one day I’ll have to let them go, too. For now, I’ll do my best to take care of them and hopefully be worthy of meeting them at the Rainbow Bridge.

Love you tons, pug monster.

LG_LLNR ACNF3 N4 MAM0 DEH0 DEL0 ID0 DP0 ADP0 BS0 DS0 DEP-758413312 IN0.0 LMBP-730186860 FC-1438013440

In The Words of the Sage Jovi

“Woah we’re halfway there.”

Round seven of chemo is history, and round eight is almost over. They’ve both been on the higher difficulty, but I’m still surviving. Neuropathy has been the biggest thorn in my side. Okay, not my side but my lips, throat, mouth in general, nose, eyes, and fingers. Winter is in full effect and does not care about chemo side effects.

On January 5ᵗʰ I was scheduled for my second CT scan to see if the cancer had any changes. It was the first time in my nearly four years of cancer experience that I had any issues with a scan. We had to drive through a storm which caused us to arrive thirty minutes late. The scan itself was still an hour later, but the contrast drink needed to be started an hour and a half before the scan. I thought this would mean we had to reschedule, but there was an alternative contrast I could drink in less time. They brought out a large bottle of clear liquid and gave me a flavor packet of my choice. Just one problem. It had to be refrigerated before use.

The 8ᵗʰ infusion was only two days before the scan on a Wednesday because the usual Monday was on New Year’s Day. My cold sensitivity was still high. I tried my best. They wrapped a towel around it so I could hold it. We found a long straw so I could bypass my lips with each sip. I tried
taking two sips before swallowing to speed up the process, but the second sip was too cold. After twenty minutes I’d only lowered the drink level by maybe a centimeter. I was fighting back tears because they would only add to the pain when they touched my eyes.

The person who would be doing the scan came out to check on me. She must have seen the frustration and anxiety on my face because she immediately suggested rescheduling. She
managed to make an appointment a week later and returned with two bottles of regular contrast. She confirmed I could leave them on the counter to avoid any cold issues and marked out the times to drink each portion so I could start before I arrived.

I talked with my oncology team yesterday. My new scan date is tomorrow. We may or may not add radiation therapy depending on the results. I don’t know how radiation works so I’m nervous about it. I’ve found a few videos on YouTube to check out since understanding a thing eases the fear in my case. My dreams have been a little more tense because of the fear. We talked about rescheduling round nine from the 15ᵗʰ to the 22nd to wait for the scan results and give me more time to recover while I move into our new apartment. If we keep it as is (and nothing goes wrong) I’ll have no more infusions after February. We have until the end of January to move out
and are taking advantage of the three weeks’ overlap in leases to move a little as we go. Round nine is still set for the 15ᵗʰ at my request since the move won’t be done for a while.

That’s right. We’re in the middle of a move. On the list of things to do during chemo, I would not recommend it. Zero out of 1000. The last place was a major improvement compared to our first apartment, but there were a few issues that weren’t going to go away if we stayed another year. I’m not happy about moving ever, but our newest apartment has enough to ease the transition.

The new apartment has smaller bedrooms but two full bathrooms instead of one. Both bathtubs are larger than the one at our last place, so you can bet I’m making the master look as relaxing as possible. I plan on recharging a lot there. The apartment complex includes a year-round hot tub. I’m going to find a way to enjoy it before I’m done with chemo. It may mean bundling up
and making a mad dash to the 24-hour gym next to it before my neuropathy gets too angry. It may mean wrapping a towel around my face like a mummy to prevent exposure to the cold air.
We’ll see. The pool and the gym will be key to gaining my strength back.

Kudos to Brady and Patrick for helping move our bed, couch, and a few other big things so we could start living in the new place immediately. Seeing you two and Oscar joke around somehow gave me extra energy from laughing so much. You distracted me from feeling like I wasn’t doing enough and boosted Oscar’s spirits immensely. It was a crazy day, but you made it wonderful. I will still die on the “Oscar has been amazing at packing the majority of the time so I can focus on recovery” hill. Feel free to tease him about almost everything else.

Meet the newest member of House Mendez: Ghost, aka Ghostie, aka Ghost Malone. He’s a four-month-old French bulldog gifted to us by Oscar’s parents last month who breed them. He came with the name, given to him by a toddler who probably had Halloween on her mind since another puppy was named Spider.

Shortly after we took him home, Oscar came down with a nasty cold. Usually, it’s me who takes care of him when he’s sick, but because we couldn’t risk me catching it we had to split the old apartment in two. We’d set up a baby gate to keep the puppy separate from the pug and cat until they were more used to this rambunctious baby. For a week I hung out in my room with only the pug and cat for company. Oscar used what energy he had to train Ghost, work, and function with a cold. I pet that dawg as much as I safely could, but after a week Ghost clearly bonded with Oscar more. The puppy leaps off my lap as soon as Oscar comes back home. Lately, Ghost gets away with cuddling on the couch with me more than Oscar allows, primarily because he’s not housebroken. The move set us back a bit in potty training, but he’s improving on other behaviors.

Rager is no longer fluffing up and swatting when he sees Ghost, but he’s got middle-child syndrome now. We haven’t brought him to the new place just yet. He was difficult to move last time when we tried doing it the same day the movers took the majority of our things. So we’re taking it slow. He has a calming pheromone plug-in that is supposed to improve his mood over time. We check in on him once or twice a day when we pick up smaller boxes to bring to the new apartment. We do our best to cuddle him and spoil him with extra treats, but it’s hard to leave him alone. I keep reminding myself he did fine when we’d gone on vacation for a week while someone visited twice a day to feed him.

Then there’s the old man. Silas hit a new geriatric milestone last month. I give him teeth cleaning treats regularly, but after almost 15 years they’ve gotten to where they need removal. He also had a potential tumor on his leg. He lost about ten teeth and the tumor during surgery just before New Year’s. He transitioned from regular kibble in water to soft meat chunks in gravy once the kidney care prescription cans arrived. He’s proved to be a messy eater, and Ghost is a big fan of cleaning up whatever scraps I miss.

After a few days in the new place with Silas, I made a realization. Almost six months ago he started waking up suddenly, breathing heavily and looking around like he needed confirmation of where he was. Later he started getting out of bed in the middle of the night and walking around the room before I finally led him back to bed.

When we got Ghost, these wanderings became more common but extended down to the
kitchen and back. We were leaving our bedroom door cracked to give Ruger more access since he’d lost the living room on the other side of the baby gate. The pug would nose the door open and pace back and forth for ten to twenty minutes if we didn’t stop him. The new place has an island in the kitchen area. Now he paces in the hallway and makes laps around the island. This is what got me curious.

These are signs of dementia or another form of cognitive decline in dogs. It’s a display of anxiety in a dog that doesn’t quite know where they are. I confirmed with a vet assistant this is likely what Silas is dealing with. It doesn’t mean it’s time to let him go since there are treatment options to help ease the anxiety.

Silas has been a big part of my time with cancer and all the other crazy things I’ve gone through since 2009. Recently, he’s gone mostly deaf, started losing vision in his remaining eye with possible cataracts, lost a few pounds due to deteriorating muscle in his rear legs, and tolerated a couple of fused vertebrae causing an arch in his back. He’s still sassy if I leave home for too long and gets just as excited when it’s time to eat. I don’t know how much longer I have the bestest of bois, but I’m glad he’s still here to help me through this.

Dark Days Of Chemo

Days 4 through 6 are guaranteed to be miserable. My energy is sapped. My strength is good enough to go between my bed and the couch, or the couch to the car. My appetite is a joke.

Usually, nothing much happens. I watch an absurd amount of TV and YouTube. I remind myself (and so does Oscar) to eat at least a little at a time and drink as much as I can. Edibles again make that part easier. I nap. A lot. Only the pug and cat outdo me in that department. The cat shows off how much better he sleeps under blankets than me.

We had two Thanksgiving dinners, one with Oscar’s family and the other with mine. I could eat a full plate each night only because I used an edible. Edibles also help my mood. I hated being unable to do much more than sit in one spot. The depression associated with it was kept at bay so I could simply enjoy being there in the first place.

Unfortunately, this is also the weekend the boys stay with us. They are amazingly understanding for their age and help keep the apartment clean. I wish they could see me on the opposite weekend when I’m closer to normal. I promise I don’t use them for child labor. They do make the weekend easier in many other ways, and I think they give Oscar a boost.

Surviving the three-day boss fight unlocks an achievement for each round of chemo. However, it seems like after four rounds I triggered New Game Plus and the difficulty increases. Sunday used to be when my stats increased from 5% to 60%, and Monday buffed me to at least 90%. I’m starting round 6 tomorrow. I didn’t feel at 60% until this past Tuesday. I have two factors that might be the culprits.

It’s now winter in Northern Utah. I know it’s not the winter solstice according to the calendar. Here it starts once you see the face in Mt. Ben Lomond.

Chemo in fall came with the option of going outside and doing things with family, or simply walking around. Now I have to limit how long I stay out. I feel like the little brother in “A Christmas Story” when I’m covered in layers of clothing. An invitation to an outdoor event must come with a snowsuit, a heated motorcycle helmet, and the option to trade for a future date of my choice. I can barely tolerate winter on a normal day. Chemo makes me double down on borderline hibernation.

Not going outside means no higher impact physical activities which means I don’t sweat out the chemo. (Not sure if that’s how it works, but it’s a theory.) It takes more time for the chemo to leave my body which means I feel the side effects longer. I do have a gym membership, but gym clothing requires even more layers to survive the trip there and back without shocks from the cold.

Factor two: it’s simply the cumulative effects from previous rounds. My body has to work a little harder each round to recover. I’ve just noticed the difference this time.

I’ve found a solution for factor one. I already have a desk with an adjustable height. I’ve ordered a small treadmill that can easily fit under my bed desk. I can pull up a movie on my laptop and spend 30 minutes on the treadmill without worrying about the weather. I hope this covers not only factor one but also helps me reduce the cumulative effects in factor two.

I’m almost at the halfway mark. This part of chemo is where I get scared, depressed, and angry. This is why I have anxiety about starting another round. I hope we don’t get three Januarys in a row like last year. I’m hoping for an early spring. I hope I survive the next seven rounds of chemo. I hope radiation treatment is not needed. I hope cancer doesn’t financially ruin us this time or in the future. I hope we can figure out why colon cancer is becoming more common in younger people. I hope I won’t need a cane or walker. I hope I’ll get to meet The Avengers . . . and Spike.

All I can do is hope.

Pug Drama and Four Rounds Later

You’d think I’d have more posts two months in with all this free time. One, I was never good at regular deadlines which is the only reason I didn’t go into journalism for a living. Two, on good days I want to be up and moving, not on the computer. Three, on bad days I don’t feel like doing much of anything and have little energy to focus.

Before we get into my news, you need to share in my trauma. It has a good outcome, but Oscar and I can’t be the only ones dealing with this. You’ve benefitted from pictures of Silas the pug, so come along in the latest episode of the old man’s body doing old dog things. I’ll spare you pictures, but it looked like something from an Alien movie or Cthulu-esque tentacles were growing from inside his jowls. There’s also a bump that’s grown on one of his legs. Naturally, we’re immediately thinking it’s cancer. Silas would think dealing with cancer is the best way to show solidarity.

We took him to the vet and had it checked out. They said the thing in his mouth is normal for older dogs. The bump does appear to be a tumor. They recommended removing it along with a bunch of his teeth which are in pretty rough shape – and also likely the cause of his nasty breath. I’m grateful that whatever is going on in his mouth is to be expected. Oscar and I were assuming the worst-case scenario; we can’t afford cancer treatment for both the pug and me.

Silas continues causing panic attacks when we shake his leg or poke him or tug on his tail and he STILL doesn’t wake up. I’m hoping for another year or two with the menace, but I’ll take what I can get.

I’ve gone through four chemo treatments so far. The side effects of the fourth one have lasted longer than usual. I’m hoping it’s a fluke. I have a theory that it’s because I haven’t had something getting me out of the house and active early in the second week like I have the first three. If that’s the case, I need to find somewhere to go for a few hours on Sunday and get moving. It has to be indoors since the colder weather will not play nice with my neuropathy. Feel free to send suggestions. I can confirm walking in the mall led to retail therapy, so something a bit less expensive would be preferable.

Finishing four rounds meant it was time for a new CT scan to see if there had been any progress, and mine was scheduled for October 15th. Scanxiety came along with the usual “it’s gotten larger” and “another lymph node has it now” and “the last two months have been a waste and we’ll have to try something else that won’t be as easy”. It was cute hearing Oscar remind me when to drink the contrast cocktail. I’m a pro at CT scans after the last three years of regular follow-ups, but I let him remove the protective seal from the bottle as a way to support me. Normally I just stab a hole with my car key and use the straw.

The abdomen and pelvis scan results came back quickly and with no concerns. I had to wait out the night before seeing the chest scan results in my chart.

“There are a few small pulmonary nodules unchanged 8/18/2023, such as a 3 mm solid pulmonary nodule abutting the superior aspect of the right oblique fissure (3/115). No new or enlarging pulmonary nodules.”

“Decreased size of the enlarged right inferior paratracheal lymph node, previously demonstrating hypermetabolic activity on PET CT 9/5/2023, currently measuring 17 x 14 mm, previously 22 x 19 mm on 8/18/2023. Remaining mediastinal and hilar lymph nodes are unchanged such as a right superior paratracheal lymph node measuring 8 mm in short axis (2/26). No new or enlarging lymph nodes. Small hiatal hernia.”

The short answer: It’s working! It’s 43% smaller if I’ve done my math right. The other lymph nodes have no indications they’ll become a problem.

I’ve never heard of a hiatal hernia before, so I had to do a little digging. It’s when the upper part of the stomach pushes through the diaphragm. Normally the muscle tissue separating the two organs prevents this, but if the muscle tissue is weakened it can result in a hiatal hernia. A small one like mine doesn’t usually warrant much concern, but my oncologist says it is a lifetime deal. If it gets larger I’ll need surgery to correct it. It’s likely what’s causing my heartburn to be so much more of a problem. It means I have to keep up on anti-acids, avoid eating before bedtime, and other dietary habits. The oncologist said it’s not uncommon to see. I guess it’s one of those things that comes with getting older. Happy 38th birthday! Here’s something new to deal with! Love, your body.

I’m so glad it’s working this well. They said if it keeps going this smoothly they can take the Oxaliplatin out of the cocktail. That’s the one that damages the DNA of cells and stops it from being copied and is part of the infusion at Huntsman. They mentioned radiation might still be involved after all 12 rounds are finished. I’ll deal with that once we get past the next CT scan after round 8.

Now I have to decide what I want to do to celebrate!

Halloween and Chemo Day 2 and 3

Around the same time as when I got the news that Lupus came back, I would normally be ramping up Halloween costumes for my family. The thought of going to the same intense levels as my previous award-winning pieces while dealing with chemo, and not knowing how chemo would affect me, was heartbreaking. I told the boys and Oscar they should reuse old pieces that would need minor adjustments or get something pre-made at the thrift shop. I’m so glad they talked me out of it.

On one of my good days, I gathered all the supplies from the thrift shop and craft store. I ordered the other pieces too complicated to make. Since the northern Utah weather was not going to cooperate there were some last-minute modifications to turn tropical-style characters snow-ready. Also, I checked the manga for the snow locations. They’re STILL wearing sandals and shorts. Couldn’t even find a version where they were wearing enough to keep us warm and be lore accurate. I really tried. You know the details in a costume mean a lot to me.

Two days before Halloween, and the day before the boys want to wear their costumes to school, we go into workshop mode. Neuropathy was still acting up and meant I couldn’t go outside in the cool air to spray paint the green and grey sash for Noah’s character. He caught on quick after a demonstration from me and did a wonderful job. Once It was dry I was able to use my sewing machine to quickly put it together, including three slots for his swords to fit. The hair and makeup were also easy for my hands to do this year, especially with the red wig I found at the thrift shop. My fingers were able to stitch on the red ribbons for two hats, but it was Oscar’s ingenuity that figured out the leather straps to keep them on if the wind acted up. Oscar also gets full credit for how good his bandana looks and cutting up a red button-up to become a vest with Charlie. The remaining pieces could almost work for a future costume.

The final results are definitely worthy to go on our family photos wall with the other Halloween costumes. I couldn’t be more proud of these three for how much they stepped up to continue one of our few family traditions in such a difficult situation.

The boys have been enjoying One Piece lately which is where the theme came from. For comparison:

Silas the pug has a wheelchair this year, so he got to join in for trick-or-treating around our block as Zero. Ruger didn’t handle having a bell on his collar, so no costumes for him. Instead, I found pajamas that match him.

I’m grateful that Halloween landed on a Tuesday and on the second week of my chemo cycle. I wish the weather had behaved more, and not just so our costumes could be more accurate. Any sooner, and we wouldn’t have been able to go to our usual houses because of all the hills. By the end of our trek, I was outwalking Oscar and the boys. Normally, Oscar and I hold back and let the kids take pieces of candy from a bucket left outside, but we got into our characters and acted like porch pirates this time.

I dressed up in part of my Trunks costume for the October 23rd infusion day aka Round 3. My hair’s gotten longer, and I don’t have a short blue wig available to complete the look, but nobody confused me for Bulma, so it worked.

I spent some time decorating the chemo fanny pack. Sticking with charms since they’re relatively easy to attach. They’re also noisy which means I can’t accidentally startle people anymore. It happens more than you’d think and I feel like a jerk every time. I need to sew on the chains. The safety pins aren’t quite cutting it.

Day Two: I’m a little shaky in the morning but relatively okay. The pregnancy pillow kept me comfortable and on my side, so there were no issues with the Ood Ball. My appetite is okay but I have to be careful and avoid any cold food. I have wooden utensils that prevent any metal from giving me that unpleasant shock that comes with neuropathy.

The tape and bandages on my port prevent me from taking a shower, so I use alternatives like waterless soap and dry shampoo to become presentable. It also means another day of button-up shirts. Not a problem lately. My flannel shirts fit right in once October hits.

I’m able to work on my to-do list and take full advantage of it, whether it’s something on the computer, errands in the car, or household chores. I keep going until a nap becomes necessary. No complaints. I’m the best at napping. It’s inevitable since I’m not sleeping a full 8 hours straight at night.

Day Three: The day is split in two. During the first half, I have to take care of any tasks I’ve put off. Usually, this means laundry, cleaning, and general housekeeping. It might include shopping or returns. If there’s something on my to-do list that needs me to be physically active, it’s crunch time. I have to eat a decent-sized meal, or what my appetite will allow.

Once I’ve had the Ood Ball attached for 48 hours, it’s time for the second half. By now my heart has pumped the last of my infusion into my body and the ball is deflated. Oscar uses the kit from the infusion room and a sharps box to safely remove and discard the bandages, ball, and IV line.

Within an hour of removal, I feel weak, shaky, and nauseous. I don’t mess around with nausea after the 2021 experience, so I take one of the two nausea pills I’ve been prescribed. Neuropathy is still going strong with cold sensitivity. I’m grateful that our current apartment has a fireplace. Oscar and the boys might be overheating, but they tolerate the fireplace adding that extra warmth so my toes and fingers don’t hurt. Another hour later, I’m extremely sleepy. It feels almost like fatigue, but it’s not painful.

If I have a chance during the second half, I grab a full shower, wash my hair, and change into clothes that don’t have a zipper or buttons in front. Sometimes the exhaustion kicks in too quickly and the shower has to wait for another day. Washing my hair has become less of a priority after the third round of chemo. It’s been thinning so much that brushing and combing it adds frustration and sadness to the situation. This would typically be at least three months’ worth, but it’s only two days of hair from my brushes and comb.

Day Three is generally mental, emotional, and physical preparation for the second half of the first week which is the hardest part of my chemo cycle. Stay tuned.

Natural Anthem and Day One of Chemo

I’m sitting next to a fire pit while a fountain with a lion head runs by a vine-covered wall. It’s this little oasis in Hollywood a few blocks from the stars on the sidewalks. Our hotel was remodeled after old-school movie magic, and I have the honor of using J. Garland’s room for a few days. While it’s nowhere near as large and grand as the Sahara or the black pyramid in Vegas, it’s perfect for me.

My body is back on the upswing after the second round of chemo. I’ve been meticulously tracking any side effects and, so far, the pattern is continuing. Maybe later I’ll post a graph showing how they appear in a two-week cycle. For now, the fire feels nice, the fountain has a decent rhythm, and I want to hug whoever planned the black and white decor to go with all the green California vegetation.

Hollywood Hideaway
Giant Bird Of Paradise
Giant Bird Of Paradise (Base)
Giant Bird Of Paradise (Top)
Leopard Plant
Date Palm with friut
Kashmir Cypress

Oscar’s asleep in the room. He hasn’t let me drive once the entire trip, but I’m going to insist I get to do a good chunk of the drive back to Ogden. I can’t blame him. My energy levels on the first weekend have been low. The idea of falling asleep at the wheel is maybe silly but still a mild instigator of anxiety. Since he let me take a few naps along the way, I’m fine with letting him snooze.

Why Hollywood? No, Capitol Records didn’t find the video of Ty and me doing “What Does The Fox Say” and offered to sign us. This trip was one of those big plans we made when I still had No Evidence of Disease. Death Cab For Cutie is doing a concert of their album “Transatlantacism” front to back tomorrow night. The Postal Service, Death Cab’s side project, will be playing their only album “Give Up” front to back in the same show. Nostalgia played a big part in why we wanted to go.

Those albums were frequently in play while I was trying to survive my first year in Phoenix, away from any family and friends. They were mellow like lo-fi is famous for today, but something I could sing to. They kept me grounded. I didn’t have access to my meds at the time.

Remember, in 2004 no longer being on my mom’s insurance meant major depressive disorder was a pre-existing condition. In those days I only needed one prescription, but a month’s supply was not affordable for a college student working at a Jiffy Lube. If I was dealing with cancer back then, it would have been game over because of the lack of insurance access, not due to treatment options.

End of rant, but you can see why these bands were part of my coping mechanisms. “Such Great Heights” had a flavor of rebellion and victory. “Expo ’86” was how it felt getting a daily dose of Lexapro to last a week. It’s about relationships ending for most people, but it’s a metaphor for survival to me.

This concert is one way I’m honoring the 19-year-old Stephanie who had good days some of the time and “spiraled” on day seven, who suffered through the hours until the next dose finally kicked in, who was at the mercy of new friends to keep a roof over her head… You get the idea. If you think I’m strong now and seem to be handling a cancer diagnosis unusually well, it’s because I’ve been through worse and had practice.

We weren’t sure if I’d be in any shape to take a long trip. If we didn’t have seats and it was standing view only, we would have canceled. Thankfully, the second two-week pattern matches the first, and I’ll likely be 100% in energy and 80% in strength. I’ll get to experience my husband and I, his ex-wife and mother of my stepsons, and her new husband enjoying a night out together, and not because the boys are there. It’s something I hoped would eventually happen when my relationship with Oscar got serious. I always wanted that for my family when I was a kid. I’m grateful to know she and Oscar are supportive of each other. He can use all the support in the world right now.

You’re probably annoyed that I STILL haven’t given an update on chemo treatment. I’ve been busy getting plans in place if Worst Case Scenario happens again. This vacation has forced me to sit and reflect for a moment since everything I need to work on is 700 miles away. Again, this outdoor lounge is very conducive.

Chemo treatments run in a two-week cycle. (See previous post details.) It’s different for everyone, so this is just how my body is handling it. (Has anyone made a video game showing what it’s like to deal with cancer? Difficulty levels and handicaps like no insurance to start a new game?)

Day One: We arrive to Huntsman an hour or two before I’m typically functional. I get my port accessed and my blood is tested to confirm my numbers are fine. I meet with someone on my oncology team to go over how I’m feeling, any side effects I’ve noticed, and a general Q and A. Based on our conversation we might include extras in my cocktail like IV therapy for dehydration issues, making the infusion easier to recover from. Then Oscar and I hang out in the infusion room for a few hours while all the IV bags finish dripping in.

Within the first hour of the main IV drip neuropathy begins. This affects my cold sensitivity in the nerves in my fingertips, toes, nose, and mouth. For now, it’s tolerable, but winter weather will complicate things. Some people describe a choking sensation if they touch or taste something too cold. For me, it’s like an electric shock.

The infusion room at Farmington had access to Netflix, but this one has some cable channels for entertainment. Usually, I watch Futurama or nature shows. I learned we can bring consoles and DVD players to connect to the TV. Game on.

I’ll grab a nap if I struggled to sleep the night before. Visitors are welcome. I appreciate them because they keep us distracted while we deal with the hospital environment. It’s a good environment, and the patients are taken care of, but it’s not a spa day.

My bladder decides it’s bored about an hour before the infusion is complete. Multiple bathroom trips usually indicate it’s almost time to head home. The only tricky part is making sure all the IV lines and cords don’t get tangled or fall as I cart them back and forth.

The final beeps notify the nurse I’m ready to go. I’m released from the IV drip lines and connected to a new Ood Ball. We make sure my bandage dressings are secure and note the time on the labels. I put on my fanny pack and the Ood Ball is placed carefully inside along with most of its line.

We pack up all our supplies and head out to the valet station. Once we’re back in the car, I pre-emptively take one of two kinds of anti-nausea meds. It’s the next of the infusion side effects and the one that scares me the most. Remember, it was the inability to keep down the chemo pills, food, or drinks that caused so much damage last time. I don’t even try to wait it out.

Once home, I might grab a nap or stay semi-productive. If I’m up for it, I have doctor’s orders to walk for 30 minutes daily. My energy and strength are usually about 90% once the Ood Ball is attached, and I prefer to take full advantage of it. Oscar often plays Magic with his friends Monday nights. Since I’m not working and have some time to kill, I like going with him. I’m not that great at the game, but hanging out while they play and talk trash is enough for me.

Bedtime means making sure I have button-up pajamas to secure the line to my port and don’t roll over in my sleep. The Ood Ball rests near my waist in the fanny pack, allowing me to sleep on my side like normal. If I roll over it could cause issues with the Ood Ball, so I have a new pregnancy pillow to prevent it. (Ads and YouTube have been sending me pregnancy advice ever since I researched it.) It’s also a good replacement for the body pillow Oscar wore out a year ago, so it was worth the investment.

One of the annoying side effects has been sleeping for no more than four hours at a time, even with the help of sleep aids like melatonin or ZQuil. I’m grateful for short-term disability and access to a leave of absence. I am in no physical or mental state to work the next morning.

Stay tuned for Day 2.

Chemo 101 Refresher

The Ood Ball (also known as the Holy Hand Grenade) is back! Why would I be so excited about having this thing attached to me for 48 hours? Because it’s not the pink pills from before that caused so much trauma/drama for us last time. Also, that fanny pack holding the Ood Ball is a great accessory these days.

Time for a quick vocabulary lesson, starting with my chemo cocktail. My treatment is known as FOLFOX + Beva.

FOL: Folinic Acid: Reduces side effects and adds protection to healthy cells
F: Fluorouracil (aka 5-FU) (aka 5-F$@# yoU): Causes cancer cells to starve to death. It takes thymine out of the cell’s diet, but scientists are still figuring out why cells die without thymine.
OX: Oxaliplatin: Sticks to the cancer cell and prevents it from making copies of itself.
Beva: Bevacizumab (aka Avastin, Zirabev, Mvasi) (aka Beelzebub): Prevents new blood vessels connecting to cancer cells. New blood vessels allow cancer to metastasize (move to other parts of your body). Beelzebub wasn’t a part of my previous Ood cocktail because it was still in the original organ.

It looks like algebra, so let’s do some factoring to cover the duration. Just remember Please Excuse My Dear Aunt Sally. [(Beva x 30 minutes) + (FOL + OX) x 2 hours] + F x 48 hours I also get a small pill (that isn’t pink) of 5-FU before the infusion.

Now we can talk about balls. Medical pros refer to them as elastomeric pumps or balloon pumps, but patients come up with the best nicknames. (In putting this together, I realized for the first time that the Holy Hand Grenade is made out of a small coconut. The more you know!)

Original Size (From 2021)
12 Hours Later
Ood From Doctor Who
Monty Python & The Holy Grail

Mine is about the size of a softball when it’s first attached and holds 5-FU. It’s more effective when it’s injected very slowly, milliliters at a time. It’s fully deflated after 48 hours. Chemo balls allow patients to finish infusions anywhere rather than being stuck at the hospital until it’s complete. It’s also a win for oncology teams since it frees up space and time to help even more patients.

My favorite part is how the medicine gets from the ball or IV drip to my body. My veins were miserable after the two rounds of pink pills. Trying to attach a line the traditional way only led to bruises. Nurses today have issues finding a good vein in my wrists or hands which means they still haven’t recovered. This is why chemo patients often have what’s called a port.

Imagine the squeaky part of a squeaky toy being surgically placed under your skin and connected to a vein close to your heart. It acts as a reservoir that a needle and IV line can connect directly to. Medicine can be injected into the port and blood can be drawn from it. Anything a regular IV line can do it can do better.

Going home with the Ood Ball doesn’t mean I wheel an IV drip everywhere. Once it’s connected to my port, the ball sits in a fanny pack on my waist while my heart does all the work, pumping it into my bloodstream slowly and steadily.

It can be awkward for some people and takes some getting used to, but mine has never given me issues. The one downside is the upkeep. Every month I have to get it flushed with saline and heparin to prevent infection and clotting. Ports require a special kind of needle that your neighborhood clinic doesn’t keep in stock. They have to be flushed every time they’re accessed and disconnected, so each needle comes with a full kit including the saline and heparin syringes, gloves, and disinfectant supplies. If you have large hands, the kit only has one size. (Poor Greg. He tried his best even while his hands lost circulation.) I’ve used it a handful of times for CT scans and one surgery between April 2021 and July 2023. Personally, I love it, but it’s not a great long-term option for everyone.

Knowing how things work, especially where medical concerns are involved, reduces my anxiety. Learning just these basics has made living with cancer more interesting and less terrifying. What’s that phrase? Know thy enemy?