2021 – Good Riddance

It’s been a long minute since I’ve updated you readers on my life’s personal unexpected bumps and deviations. If I thought 2020 and the start to the pandemic was hard, I was certainly in for a surprise with 2021. I know 2021 still has over a month to go, but I’m done with 2021, so I’m writing this now. This is very long.

Scottish highlands

Last December, my boyfriend Chris, went to his doctor about a sore throat that hadn’t improved for a few months. They referred him to an Ear Nose and Throat clinic in Spokane. It took until January to get in, but I remember his phone call after his appointment. He said the doctor sent a small scope down his nose into his throat and what he found looked suspicious and he needed to come back the following day to see a surgeon.

It felt a bit unreal to me. It couldn’t actually be happening again, could it? Chris sounded freaked out. I tried to calm him and reassure him that it was probably nothing serious, but really I was panicking inside too. I accompanied him to that appointment the next day and waited in the car nervously, as that was the Covid protocol at the office. A few minutes later, the doctor’s medical assistant called my cell phone and asked me to come in and she met me in the lobby. That’s when I knew we were dealing with cancer.

They sent the small camera down his nose again and showed me on the video monitor the white ulcerated spot deep at the back of his tongue. They were somewhat casual about the whole thing, like, “Bummer dude,” which frankly I appreciated because it eased my anxiety a little. The friendly male doctor told us he was almost positive it was throat cancer, and there was a good chance it was caused by the HPV virus, which was what we should hope for. HPV positive cancer is much more responsive to radiation and has a good cure rate.

We were leaving to go to Mt. Baker and Bellingham for a few days for my birthday after his appointment, so we stuck with our plans and headed out from there. The whole trip had a somber, anxiety-laced feeling. It was our last few days of being oblivious to what the future may hold. We went snowshoeing and just appreciated the mountains.

Mt Baker snowshoeing

When we returned home, Chris was scheduled for a surgical biopsy at Sacred Heart that week. The surgeon we’d met the last week performed the procedure under anesthesia. Naturally, I cried wandering around the hospital waiting for a call from the surgeon. This all felt way too familiar. Triggering.

anxiety preparing for biopsy surgery

When the surgeon called, I went and met him in the little conference room while Chris was in recovery. It was no huge surprise that the biopsy results showed HPV positive squamous cell carcinoma. It was somewhat good news, because as I mentioned, HPV positive is more curable. We discussed the option of surgery then radiation, or just radiation and possibly chemotherapy. Because of the risks of damaging the voice box, surgery was not recommended.

I should take a moment to talk more about the nature of HPV positive. Prior to this, I was familiar with the concept in terms of cervical cancer. There are a number of strains of Human Papilloma Viruses that are responsible for causing cancers of the cervix. It’s less well known that many of these viruses can also cause oropharyngeal cancers. The vast majority of people will acquire (and usually clear) an HPV infection in their lifetime and never even know it. Some, however, will have the virus for years or decades and not know it, all while it causes mutations to grow cancer.

In younger patients, throat cancers tend to be HPV positive and not related to tobacco or alcohol use. They are also on the rise in younger patients, especially men. I feel like there is little awareness of this, and people don’t really talk about it. The only time I’d heard of someone with throat cancer was Michael Douglas and I never heard HPV mentioned.

How do we prevent this? Well, it’s probably too late for you to do much about it. But you can prevent your children from getting it by getting them vaccinated before they’re sexually active. Gardasil is a vaccine that’s been around since 2006 for the high risk strains of HPV that cause cancer.

A quick detour from the story. Sometime around last December, I was hanging on by thread to my sanity and tolerance for retail pharmacy. Not that the feeling was anything new; I’ve felt like I was stuck on a hamster wheel of misery with my job for a long time. Some days are great; I cry with a patient who lost their spouse, I make someone’s day, I have meaningful interactions, and I’m not drowning in never ending work and stress. Other days, my entire body aches, I cry when I get in my car because the unaccomplished tasks seem never-ending, and the assholes who yell you at you don’t make any amount of money worth it. There have never been enough of the good days to make the bad days feel worth it to me. Some people handle being pulled in a million different directions at once quite well. I probably appear to handle it well even. But in my head, I want to lock myself in the vaccine room and wait till closing time. Or maybe fake a heart attack. Actually, I’ve questioned numerous times whether I’d even have to fake it. I saw a cardiologist for chest pain a couple years ago who asked me if I was avoiding stress. Ha!

Anyways, around December, I was telling Chris that I couldn’t work at my job as much anymore and I felt like my life was passing me by and I was stuck. Like I’d missed my calling to do something different with my life but I didn’t really know how to get off this freight train going the wrong way. I cried and asked the universe to provide me with an exit path – a catalyst to help make my decision easier.

Around the same time, something odd happened one day at work. A patient of mine, who I also knew from years ago who was instrumental to me during Mike’s cancer journey, took me aside to tell me God had spoken to him about me that morning. He told me something along the lines of, “God told me to tell you that the world is going to change and you need to save 6 months worth of food.” Now, I have become quite the skeptic and agnostic over the past decade, so I listened politely but with little concern. I was intrigued, thanked him, and puzzled over what it could mean the rest of the afternoon. Was the pandemic going to get way worse? Was I going to lose my job? Was it going to be my health? When I got home, I told Chris and we sorta laughed about it…but also bought an extra frozen mac ‘n’ cheese and some canned beans at Costco each time we went over the next couple months, ya know?

Fast forward to Chris’s cancer diagnosis a couple months later. I knew then I’d have to take time off work. Nobody should have to go through cancer treatment alone. It occurred to me how ironic it was that this seemed to be the catalyst that would change my situation at work and life. And although saving up 6 months worth of food for this event wasn’t necessary, perhaps the prophecy was a metaphor for the next 6 months of hardships that were to come.

The first week of February, we met with the doctor who would be Chris’s radiation oncologist at Cancer Care Northwest. I was flooded with emotion because it was Dr. Fairbanks, who was Mike’s radiation oncologist 10 years ago. I loved Dr. Fairbanks then and I love him now. He is funny, compassionate, tender, and amazing. His medical assistant constantly has to come get him for his next appointment because he takes so long visiting with you and talking about everything. Our first time in his office, I told him he’d treated Mike years ago at Deaconess during some of the worst days before he passed and how much he’d meant to me then. I started crying and he tenderly passed me a box of tissues. He’s been such an amazing doctor throughout Chris’s entire treatment, and he just moved offices last month after Chris was essentially done with his visits there.

Over the next week or two, Chris went through a number of appointments to get ready for treatment. He had a PET scan (which determined the cancer was beginning to infiltrate a lymph node on each side of his neck), he had a port installed, radiation mask fitting, a hearing test, and Covid test. Chris was offered the option to enroll in a clinical trial which would essentially give him the standard of care for his cancer, which we found out would be 7 weeks of radiation and 3 doses of chemotherapy, plus an experimental drug from Galera Therapeutics that would be infused 5 days per week prior to radiation to lessen the side effects of radiation-induced mucositis (inflammation of the mouth and esophagus). Dr Fairbanks said he highly recommended it, so we agreed.

starting chemotherapy

We were told Chris probably wouldn’t start to feel ill until the 3rd week of treatment or later, so I didn’t plan to leave work until that time so I could maximize my time off with him during and immediately after treatment. I went with him to his first treatment on March 1st, which involved an hour infusion of the clinical trial drug, about 10 minutes of radiation to the neck region, and then his first dose of cisplatin infused over a few hours. It was a very long day. By the time we got home, I think we thought we’d made it through the first chemo unscathed, but within an hour Chris was lying on the bathroom floor, pale and clammy. He never felt good again for months.

chemo side effects

He drove himself to treatment the next day, but ended up sleeping in the car in the Walmart parking lot for a while after his appointment. That was the last time he drove himself. We coordinated with friends and family to take him on the days I was working.

The first couple weeks of treatment hit Chris hard. They surgically placed a feeding tube in his stomach because he struggling to eat and maintain his weight due to nausea and taste and appetite loss. That became his sole way of staying alive. He had a little backpack and twice a day we’d fill up the disposable bag with formula and prime the tubing and plug him in for the day or night. I was still working at that time and was incredibly stressed about having to drive to Spokane in the morning somedays and then hurry to work in Colville afterwards, leaving Chris alone to figure out the feeding tube and remember to take all his pills.

cancer fatigue in bed

Finally my Leave of Absence began March 24th. I left work that day truly not knowing if I’d ever be back. The last time I left work for my partner who had cancer, I didn’t come back for a year. Formally, I expected to be gone a minimum of 12 weeks because that’s how long Washington state paid FMLA is (thank gosh our state is so awesome to have that). Cancer Care told Chris he wouldn’t begin to feel better for at least 6 months, but more realistically, a year.

I developed a lot of anxiety and almost a PTSD-like response to the whole situation. I constantly felt a pit in my stomach and my heart raced. At some point during Chris’s treatment, I began my own mental health leave of absence. That gave me more time off to focus on my mental wellbeing, to have the situation improve and my own anxiety improve, as well as to be able to drive him to appointments and help him at home.

After the second dose of chemo in the 4th week, Chris noticed a dramatic hearing loss. He’d had some ringing in his ears and hearing loss after the first dose, but the second dose was incredibly obvious. He went and had a hearing test and saw he’d lost most of his high frequency hearing and it would be permanent. We had to make the decision whether or not to get the third and final dose. I researched all weekend reading every clinical trial I could to determine if a third dose had a significant outcome on survival benefit. We came to the conclusion he’d already had the minimum dose used in many clinical trials and there didn’t seem to be much more than a meager increase in survival rate with a third dose. But more hearing loss would be almost guaranteed. Our clinical trial coordinator and radiology oncologist told us they agreed with our decision, which was comforting.

Hearing loss after cisplatin before and after

I needed to accompany Chris to virtually every appointment because he couldn’t hear what they were saying and I had to be an intermediary. We attempted to get hearing aids at one point, but radiation had caused too much fluid buildup that it blocked the hearing aids from working. So the doctor put a tube in one ear to drain fluid, and after a few months the other side drained on its own. Finally, Chris did get hearing aids a couple months ago and it’s really helped him hear better (and preserve my sanity).

Through the 7 weeks of treatment, Chris had some of the most unpleasant side effects. The skin around his neck was burnt to a crisp and peeling, so when we’d go outside for short little walks, he’d have to wear something to cover it up because any little sun felt like it was scorching him.

neck burn from radiation

He was constantly nauseous and threw up on a daily basis, often multiple times a day and night. Because the throat lining is injured and trying to repair itself, it creates a ton of mucus and phlegm to try and heal. So Chris had to carry around a “spitter” to hack up constant phlegm. He would take a medication to help thin it out and help with dry mouth (radiation kills your salivary glands so you constantly have dry mouth) which would make his nose run and make him drool.

coldness after cancer treatment

He was always (and still is) freezing cold, he had some kidney function issues at one point from the chemo, a UTI another time, possible fungal infection of his tongue and throat another time, hair loss on his face and back of head in a weird pattern giving him a Hitler-esque ‘stache, the outside air burned his throat so he couldn’t really go outside much, he couldn’t drink or eat so he started getting IV hydration every single day.

hair loss from radiation

The last week of radiation, Chris was throwing up so frequently, he was getting anxiety about throwing up and choking to death during radiation each day. Somehow he made it through, and the last day of radiation was April 16th. It was an emotional day, and there were some tears.

Radiation treatmentcertification of completion of cancer treatment

Over the next few weeks, things really didn’t improve with the exception of not having to drive to Spokane at 7am each day. Radiation continues to cook you for a few weeks. Chris wasn’t eating at all, he gagged if he tried to swallow anything. He could get a little water down, but still needed IV hydration each day so he went to the local hospital for a few hours each day for another couple months.

Griffey snuggles

He was still throwing up daily which didn’t seem right. Even 6 weeks after treatment had ended, Chris was still puking each morning. Finally, it got to a point where he was puking up a blackish substance and it would come out of his feeding tube as well. We went to the emergency room that day and it was a good thing we did. He couldn’t stop vomiting when we got there. They did a CT scan and nothing was amiss, and it wasn’t blood, but they diagnosed it as “gastritis” and gave him a dose of Prilosec. He essentially never puked again after that and has been taking Prilosec every morning since. We also switched his feeding tube formula at that point, thinking maybe the old formula was causing some reflux and contributing to the gastritis. Still kind of a mystery why that happened, but we sure wish we’d figured it out sooner. Maybe he would’ve been less miserable throughout the entire treatment.

Emergency room visit

So with the vomiting under control, it was time to really work on learning how to eat again. Chris had a barium swallow test where speech pathologists had him swallow different foods with barium on it and watch his swallow mechanism on an x-ray. Thankfully his swallow was functioning fairly normally. Many people have a malfunctioning epiglottis after radiation that causes them to aspirate their food and choke or get pneumonia. Chris began trying to eat little things like watermelon and increase his water intake. He went to speech therapy a couple times per week where they taught him swallow exercises to prevent the swallow muscles from developing fibrosis from scar tissue and lack of use. She also pushed him to try crackers and bread, despite his assumption that he’d choke and die. I was like a proud mother watching my toddler eat a graham cracker for the first time.

Barium swallow test

Another complication of radiation is damage to the lymph nodes and a disruption of lymphatic drainage in the head and neck. Chris was getting swelling around his neck, so he started seeing a speech pathologist who taught us lymphatic drainage massage techniques. We’d spent about 45 minutes per night trying to help the lymph drain out of his neck. Then he’d put on this pad under his neck and a wrap to hold it in place. It looked ridiculous.

lymph compression wrap

Finally his insurance approved this cool lymphatic drainage vest that compresses his head, neck, and chest in a rhythm to mimic the massage. He used that daily for a while. The lymph buildup seems to have gotten better the last couple months on its own.

lymphatic drainage machine

Shortly after treatment ended, Chris developed a new side effect we weren’t expecting. One of the toxicities of the chemotherapy drug, cisplatin, is nerve damage. So Chris’s hands and feet began to feel numb, tingly, and achey. Chris can’t feel things normally with his hands, can’t grip things the same, and can’t feel the bottom of his feet and they hurt. If he walks for more than a few minutes, they hurt. If he wears socks, he gets this uncomfortable sensation that the socks are bunched up around the bottom of his feet, even though they aren’t. So he wore flip flops until it snowed basically. Chris recently finished a few months of acupuncture treatment for this but it didn’t resolve the symptoms, although perhaps gave him a bit of feeling back in his hands.

Acupuncture

When we were told this was possibly a permanent side effect, we reached out to a Cancer Care Northwest social worker and asked about resources for cancer patients who exhausted their paid FMLA but couldn’t go back to work yet, if ever. She referred us to lawyers in Spokane who often work with cases like ours to apply for social security disability. We’d never even considered Chris may become disabled from this and not be able to go back to work, but it was seeming more impossible as time went on. The lawyers were amazing and did all the paperwork for us and told us to expect a long waiting period, followed by a denial, followed by an appeal and another long waiting period. It could be a year to get an approval if at all.

By some miracle, Chris got a call just a couple months later saying he was approved on the first try. I don’t know how we got so lucky, but it took a huge weight off me in terms of having to go back to work as much as I’d been working previously. I had already decided I needed to reduce my hours prior to all this, but Chris not working would’ve made that pretty tough. Chris was more saddened by the disability approval than relieved. It felt like a final goodbye to a job he’d really enjoyed for 20+ years that kept him active and using his brain, not to mention a lower limited income going forward.

Summer was spent with short walks in the neighborhood, bike rides around the golf course, lymphatic massages in the evenings on the patio, occasional visits to the lake after the sun wasn’t so high in the sky, lots of watermelon, and hours spent trying to eat new and different foods and up the calorie intake.

bike riding with dog basketbike ridinglake days deer lake

I was able to get away for a quick Priest Lake camp trip, a backpacking trip with my mom, and a few paddle boards. Chris felt good enough to go to the Gorge Labor Day Weekend to see Dave Matthews and Allen Stone, and we even went for a little overnight trip to Winthrop with Griffey.

Priest Lake paddle boardingbacking packing with mom Goat Rocks Wildernesswinthrop washington in the fall

Chris decided to sell his boat because it just didn’t make sense to be making a payment on something we couldn’t use for more than a year. It was bittersweet because Chris loved that boat so much, but some of our best friends in the Carpenter family bought it, so we were still able to enjoy the boat a few times this summer. Chris even waterproofed his feeding tube to wake surf once, even though it exhausted him.

waterproofing PEG tube wake surfing

I decided to fulfill a longtime dream and buy a cargo van to turn into a camper van. I’d been saving as much money as possible the entire previous year for this endeavor, thanks to the pandemic. In June, I finally reserved a 2021 Mercedes Sprinter 170″ wheelbase from Seattle and Chris and I flew over to pick it up and drive it home when it arrived in August. I’d made friends with an amazing van conversion/builder on Instagram via a van-lifer that I’ve followed for a long time. He flew up from California in September and stayed with us for a couple days. We took him to some favorite local sites. Then he drove our van to southern California where he’s been working on the build the last couple months. He’s estimating that it should be done early next month, so we’re in the deciding stage of how we’ll go pick it up.

Mercedes sprinter van 170 wheelbase sleeping on the beach Cle Elum lake

A few months ago, Chris developed a new onset shoulder pain in both shoulders. It kind of came out of nowhere and is extremely painful. He’s had x-rays, an MRI, and is trying Physical Therapy, acupuncture, as well as massage when he can afford it – insurance only covers a small portion unfortunately, and that’s what seemed to give him the most relief; go figure. His range of motion in his shoulders is 30% what it used to be and the pain bothers him all day and all night. If it wasn’t for that, he’d actually be feeling pretty decent right now.

Chris gets exhausted very easily, has the shoulder pain, nerve damage in his hands and feet, still has hearing problems even with the hearing aids, and still has a feeding tube. Getting the feeding tube out has been the number one goal since treatment ended, but it just keeps getting pushed out because he can’t increase his weight or even maintain it without the tube formula. To eat a bowl of yogurt, granola, and banana each morning takes him sometimes hours. When we try to go out to a restaurant, I order way too much and he can only eat a few bites. One bite can sometimes take 5 minutes to get down. Bread is pretty much a no go. Things don’t taste right, he has persistent dry mouth, and it takes forever to eat. We don’t know if the eating difficulties will last forever, but it’s pretty guaranteed that eating will never be the same, which is quite sad when so much of your joy has been eating around the world for the past 10 years.

As far as the cancer goes, Dr Fairbanks gave Chris a clean bill of health at the 3 month and 6 month follow up PET and MRI scans. What a relief. He’ll still have to have regular scans as well as scopes down his throat to make sure there is no reoccurrence. I read reoccurrences are more likely to occur in the first 1-2 years so he’ll be watched very closely for a while.

An update on me. I had been hoping to get a hysterectomy for the past year or so because of fibroids, adenomyosis, and persistent pain. I kept putting it off out of nervousness and convenience. Finally since I was already off work, it felt like the right time to do it. I was scheduled for surgery in October, but then it was cancelled due to rising Covid cases in the hospital. Suddenly, it made sense to go back to work for a bit. I was mentally in a much better place with Chris done with treatment and slowly getting better, I actually felt a little excited to go back and see my coworkers and patients I’d left so abruptly before.

My intention was to go back full time until I got called to reschedule my surgery or the van was done and we could go travel a bit. I wasn’t expecting the hospital to call so soon, but they called me two weeks into my time back at work and rescheduled me for November. So once again, I had to leave Walmart pharmacy in a bit of a pickle trying to cover my shifts and restart a leave of absence.

hysterectomy surgery

Monday this last week was my surgery. It wasn’t pleasant for the first few days, but by the end of the week, I was feeling much better and excited to have this behind me and hopefully have less discomfort going forward. Losing my uterus has never been an emotionally difficult decision for me; I decided years ago I didn’t want to have kids of my own. I still have my ovaries so no issues with hormones. Hopefully the next 6 weeks I can take it easy and recovery smoothly. We’re still considering how we’ll go pick up the van soon too and make a slow trip home in it before I have to go back to work.

My hope is my return to work will be different than before. I plan to be hourly, and serve as more of a fill-in relief pharmacist than a staff pharmacist going forward. That has always been my goal and life is too short to wait any longer. We’ll spend some big chunks of time being nomadic van-lifers over the next year or so. Griffey is going to be 17 in less than a week, so I’m hoping he can still enjoy the hippy van life as a senior for a while.

Soon, we may be more broke than we have been in years, but I’m embracing it. I’d rather be broke and happy making memories, than mentally and physically exhausted and tormented by “what-ifs” each day. It’s never too late to change how you live your life – until it is. I can make some money on the road with my blog, social media, and photography work which is something I truly love and enjoy doing. I’m keeping my options and expectations open.

If you’ve made it this far, wow. Sorry that turned out so long. Thanks for reading! I would love and appreciate if you’d support this blog by using affiliate links for things like Amazon Purchases or Booking.com hotel or car rental bookings which are highlighted here. I also have signed up with a new ad network on my website so you may notice a few more ads. I realize they are annoying, but it helps provide a small income. Feel free to share our Airbnb listing with people who may be visiting Chewelah. Looking for some art prints for your wall? Please have a look at my printshop. All those things help greatly! We love you and thank you endlessly!

Jessica, Chris, and Griffey

“And then there’s the most dangerous risk of all – the risk of spending your life not doing what you want on the bet that you can buy yourself the freedom to do it later. ” – Randy Komisar

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22 thoughts on “2021 – Good Riddance

  1. Sharon Moore-Fogo

    What a journey. Love, light and peace to you both. Continued prayers for health and healing. May your blessings multiply and your challenges disappear. Hugs to you both!

    Reply
  2. Don and John

    Wow. Quite a story for sure , you guys will move forward and be better than ever. It is hard at first living on less but more rewarding than ever also . Being free more and not tied to a (job) where you could be replaced the next week is nice also . Love you both you have always both been so kind and upbeat to be around . Get in the ban as soon as you can and explore and see some country. Life is better on the road (for us anyway lol ). Happy travels and hope to see you sometime soon .

    Reply
  3. Jason B. Miller

    Life should not be so hard sometimes. For what ever reason your not alone with bad luck. Just when I get one injury under control, I get hit with a worse one, but keep smiling, and enjoying this crazy ride called life. It’s the good days that make the bad days worth powering through.

    Reply
    1. Jessica Carpenter Post author

      Yes, life can be rough. Peaks and valleys, and I guess the valleys make me more grateful for the peaks. Sorry about your continued injuries. Physical discomfort and pain sure can make life difficult. I hope you can recover and feel better soon! Thanks so much for your comment and well wishes!

      Reply
  4. Sean Orr

    Tell Chris I am thinking of him, tell him to get better and better everyday. He is strong, full of life and still young so get out here and see the world. I always enjoy seeing the travel stories. If he ever needs anything let me know!

    Reply
  5. Cathy Field

    Jessica and Chris thank you so much for sharing your story with us. Hugs to both of you and I am praying for your recovery.
    Love you my friend.

    Reply
    1. Jessica Carpenter Post author

      Thank you Tami! I truly believe this is part of my purpose on this planet. I can’t fathom someone going through this kind of thing alone. So glad to be a part of Chris’s journey and to ease some of the awfulness of it all.

      Reply
  6. Mike Sacco

    You should be the poster child for resilience. Not many have to walk the paths you’ve walked Jessica and you’ve done so with honesty and grace. I love you for that.

    Reply
    1. Jessica Carpenter Post author

      Appreciate that so much, Mike. Definitely didn’t mean to be the poster child, but honored to be the person who gets to be there for someone I love going through something so difficult. It must be part of my purpose. Love you back!

      Reply
  7. Priyanka

    I admire your resilience and fighter spirit Jessica! You are such an inspiration. Sending you both lots of healing thoughts. If your journey from So Cal allows a stop in the Bay Area, I would love to see you!

    Reply
  8. Vickie Nussbaum

    Jessica, please know that you and Chris have been in our thoughts and prayers. Wishing you both health and wonderful travels ahead. I love following your adventures….

    Reply
  9. Vickie Nussbaum

    Jessica, please know that you and Chris have been in our thoughts and prayers. So glad that these extremely rough months are behind you both. Wishing you both health and wonderful travels ahead. I love following your adventures….

    Reply

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