I once watched the WeatherPort tent I’d been sleeping in fly thirty or forty feet up into the stormy night sky and then land in a lake, angry with giant waves. The feelings of abject horror and fear in those brief heart beats, between gusts, as my only means of shelter in the wilderness disappeared, came back two weeks ago while sitting in a small windowless doctor’s office. The major difference between the awful idea of my only source of protection being ripped right off the top of me while sleeping during a violent Alaskan rainstorm and this moment in the doctor’s office happened to be that in the mountains during the storm I could control some of the circumstances and use what knowledge and tools I had to survive. This felt a little different. In this new sort of storm, the doctor told my wife and I that the series of x-rays and scans leading us to the uncomfortable plastic seats across from her had confirmed the worst possible scenario.
Time slowed. Just as it had when I awoke to the tent flying off. Her speech slowed and became somewhat garbled, an old VHS with a wrinkled ribbon of tape. I barely remember any of her actual words, only really recall the sadness and feelings of empathy and caring energy radiating from her small frame as she explained to us the CT scan confirmed the X-ray. A large tumor lies in the middle of Annette’s chest cavity, and that she needs another CT scan because they are concerned the liver might also have a tumor.
The two of us could have been orbiting in space in that medical office. Our world momentarily imploded. I felt disembodied and I can only imagine how Annette felt. I’ve combined my story of losing the tent in that storm, because I went from a pleasant safe slumber in one of the most peaceful places on the planet to instant chaos, horror, and intense fear for my very existence and in all honesty, the time at the delivery of this news from the doctor felt far worse. We went from a healthy happy family to uncertainty and fear in seconds.
This news came on February 24th. Two days earlier Annette went into the same office to get some meds for a nagging cough. She’d been training for the Tour of Anchorage 40 skate ski race and couldn’t shake a cold. She also kept complaining that she felt out of shape. If you know Annette, she’s never been out of shape. In retrospect, her body was telling her something. Thankfully she listened.
Luck also intervened with her choosing to hit some random urgent care office on a Saturday, because the doctor she met might be part angel. She ordered the initial x-ray and then had a radiologist look at it, and then somehow got Annette in for the first CT, and by Tuesday the second CT. The news Tuesday came as a little relief. The liver did not have a tumor. We could breathe a little more air that day. A PET scan followed on Wednesday, which also confirmed the area of concern remained confined to the area around her thymus. This is a gland in the chest cavity between the heart, lungs, and ribcage. The window of what the tumor might be narrowed; however, the size, cancerous or not, posed a problem.
Friday, that same week, came the first major procedure to get us closer to a diagnosis. They needed a biopsy. This meant four large needle punctures through the sternum area. Ouch. This hurt, and I wasn’t even there for the procedure.
Then came the waiting.
By this point our nerves were frazzled. We’d told a handful of friends, family, and colleagues. We needed help with our kids with school pickups and drop offs to get to all the appointments. We hadn’t told the little beasts anything because we didn’t really know enough ourselves.
Sunday night the doctor’s office called and delivered the news. The biopsy revealed the tumor possessed all the markers for Hodgkin’s lymphoma. Now we had a name and an idea what we face. Though it isn’t hereditary, one of Annette’s close cousins had already been down this road. Similar symptoms. Same diagnosis. He began coaching her and cheer-leading her in preparation for the coming battle.
That second week brought more tests, a meeting with the oncologist, and a bone biopsy. I sat in on the bone biopsy and as painful and brutal as it was, I am proud to say I didn’t pass out. That’s a biopsy they take from the back of the hip. Imagine someone cranking away at your hip bone with a corkscrew and you’re close to what that procedure is all about. We’d wait several more days for results to make sure her bone marrow was cancer free and fortunately that test also revealed positive results.
The oncologist is highly regarded and did his best to put us at ease. In classic Annette fashion she joked with the oncologist, “Let’s get this done. I want this alien out of me.” He cringed at that line, with a smile, and relayed that he’d prefer the standard plan because he didn’t like how the alien came out in the movie with the same name. Hodgkin’s lymphoma is highly treatable and has a fairly scripted treatment of chemotherapy with high survival rates. Still we wanted to get a second opinion, not so much on the diagnosis, but more of a confirmation of the treatment plan and whether or not Annette should seek treatment out of Alaska or even consider being a part of a clinical trial.
By Friday of the second week, she had an access port placed in the front of her left shoulder to be ready for treatment and we were booking tickets to Seattle for a meeting with another oncologist at Fred Hutch’s Cancer Care Alliance. To compound the stress and anxiety already crushing us, the trip to Seattle would put us directly into the current hot zone for Covid-19.
Those who know me may recall that a few years back I published The Raven’s Gift, a novel about a similar situation devastating rural Alaska. The irony was not lost on me, as we debated whether the risk of travel, away from home and our kids in a time of such uncertainty, would be worth the second opinion and the reassurance Annette would be getting the best treatment available.
Seattle felt a bit like a ghost town. We zipped from the airport to my cousin’s house on Mercer Island with ease. Travel through the city a breeze with little traffic. The day of the appointment, to kill time before hand, we walked in the sun, surrounded by green grass, tree blossoms, flowers, and spotted a few hummingbirds zipping around. Had we been there for any other reason that day we might have enjoyed every minute. I’ve been running lately, for stress relief, so I took a long run— the odd guy in a tee shirt and shorts crossing the bridge from the island and back. Forty-five degrees is warm when you’re coming from single digits and a city with three story snow piles everywhere.
I think we both started trembling when we entered the Seattle Cancer Care building. They stopped us at the door and after a series of questions about possible Covid-19 contact, gave us a sticker that said we’d been cleared, and we headed inside.
I recall, as a kid, the first time seeing a cancer patient. I nearly passed out. I must have been in third grade and when I saw my grandpa lying in the hospital bed with tubes going into him, I remember feeling dizzy and then I bolted. I tore the hell out of there. I ran down the hall, to the stairwell, and kept going until I’d hit the parking lot. From that day forward, I’ve done a fairly good job of avoiding hospitals. I don’t think I even visited Annette at work the first ten years of our marriage. Since then I’ve gotten a bit better, but the deeper into Hutch we went the more I felt that old inclination returning. I wanted to run. I’m sure Annette felt the same way.
The oncologist at Hutch provided exactly what we needed. He delivered confirmation and assurance that she was on the right path and an echoing of what her oncologist in Anchorage as well as about a dozen of our other doctor friends have told us. Which is basically: thankfully it’s Hodgkin’s Lymphoma. They say this because the prognosis is good, and this is a cancer that responds well to chemotherapy, and this is a treatment she can receive at home in Anchorage with our family, our pets, and one helluva a support network of friends, family, and colleagues.
Annette will begin her chemotherapy treatments next week. It feels so strange to write those words, but there we are.
When my tent disappeared beneath the waves of Slate Lake, I’d never felt so alone or terrified (you can watch me tell that story at an Arctic Entries event here). I’d be lying if I said I wasn't as terrified now, but in this situation, I know we’re not alone. As I shivered and fought to survive that night, I learned a valuable lesson then that has been a guiding principle in my life and something that will get us through this (and perhaps us all through this pandemic). I find hope in the sparks of love and life I possess today because tomorrow’s warmth and light is not promised. Tomorrow is not some commodity we can bank for a future date, and neither is my love. If anything, I’ve learned to share my heart today, to share my love, and be present and grateful.
[One last note: I know so many of you will read this and want to know how you can help. We appreciate that. Right now I don’t have an answer. This is all so new and we’re still navigating everything. I’ll try to maintain some level of communication here for those who want to know what is going on and how we are doing, as best I can. Thanks for the support and outpouring of love. It means everything to us both. Quyana! Thank you! Gracias! Gunalchéesh! Grazie! ]
Hi Don & Annette, this is Dan Coolidge, your dad's cousin. My wife and I had a similar journey as she was diagnosed with leukemia 5 years ago this month. We had a tough year long battle which included a bone marrow transplant. Thankfully, she is cancer free still. Being a caregiver is a tough job, take care of yourself as you take care of her and the kids. There is a ton of hope! Our thoughts and prayers are with you!
Sorry Don I should have let your know this is Andy Kivela, Stacie's dad in case you didn't know I am the droid you were looking for.
Audrey and I heard from Stacie that Annette was sick so we have been lighting candles and praying for her and your family. I kind of wish you were not such a talented writer because right now I am crying my eyes out. We know that she is a strong woman so give her our love.
Be well, Rearden family, my prayers are with you.
Thank you for using your gift to keep folks in the loop and help Annette with PR; a labor of love. One that helps us all have more insight to where you’re at and keep more love coming your way. Send the kids over once they start driving you crazy today - sledding hill is prime, and we’ve already been exposed to you all.
Hugs - Heather & Paul