Fuck Cancer

Well, Cancer, here we are. Ten months after my seizure, and now a week removed from what will hopefully be the last time I ever have to ingest poison to cure my body. It's been an intense process, to understate the obvious, and I've been in survival mode until now. First through the radiation, and these past six months through the chemotherapy, using swimming and skiing as my breaths of fresh air, my place to get centered and recharge the batteries of my body, which feels so alive in water and in the woods.

On Sunday morning I threw up a little bit - just once; not all day long like I did on the fourth day of the fifth round of chemo when I ran out of anti-nausea pills and thought I was strong enough to handle the Temodal on my own. But it was enough to send me into a mini-spiral of self-pity and depression, which are unnatural conditions for me. Ever since going into rehab at 19 I've learned to live just for today, to commune with the Great Spirit in sweat lodges and in Nature, and to use all the pursuits that feel good (swimming, hiking, singing, playing guitar) as forms of prayer. My mantra throughout this period of treatment has been: kill the bad, keep the good, give me long life, which I say to myself as I synchronize my breathing in the sauna after every time I swim. I also start and finish each session with Mitakuye Oyasin, the Lakota phrase for All My Relations, which my Micmac sponsor out in California taught me to pronounce as 'me talk, we awesome.'

But on Monday morning I woke feeling empty, energy-less and depressed. Anette and I had talked the night before and she counseled me to call the Kreftforening, which I did promptly at 0900 when they opened. As she was driving our kids to the barnehage I told my story to a woman from the North of Norway, who listened well and gave me good advice. I then picked up the phone again (again, using the tools of recovery) to call a woman who was listed on the brain tumor society's page of people willing to be contacted about their experiences. As I suspected from her area code, she is the mother of a student in 10th grade at my school, and she remembered me from last year's parent meeting. We had a good talk and I got some further perspective on what has happened to me - she has had two operations and been left with epilepsy, even having an attack with her son next to her in bed. Later that day I talked to Jake and Nick, and that helped a bit, but I was still feeling blue.

So, Cancer, you have changed me in ways that recovery never did. If staying clean for 19 years has brought me closer to who I really am, allowing me to pursue all my dreams to the fullest, you have threatened to take all of that from me. You have slowed life down and forced me to live just for today - not in the same liberating way of recovery. I haven't been able to see the future because it's been too far away, too uncertain. Even now, with the next couple of years of immunotherapy as part of this clinical trial, I'm not sure how much to plan, which for a dreamer like me is like a death sentence.

The next several months are full of wonderful things: Olivia and Chris arrive in a week, then in March we're going to Lanzarote for two weeks with Camilla, Mikael and Eric, and my parents will meet us there for the last week of the trip to celebrate my chemotherapy being over. In early April Julia (cancer survivor) Ben and Sophie will visit us, and in late April Nick and Nicole will be here. In May I'm planning to (very carefully) go back to work, and in June Andre and Elise are getting married in Ålesund. Again, Olivia and Chris are coming to babysit the kids so we can enjoy the wedding, and everyone will enjoy the beauty of one of Norway's most spectacular places. Then in July we fly back to the US, where we'll have the barn dance on July 21st and then the Fab Four Reunion in Orlando with our relay on August 1st, which just happens to be our ninth wedding anniversary. In September we'll be heading back for a quick week so I can be one of the best men in Matt's wedding.

Many of these experiences will be the pinnacles of people's lives, and it will be a joy to participate in them, but I need the energy to do so. You have drained me of all my energy, and I just need this week to recharge, which I've already been doing by skiing on Tuesday and swimming yesterday.
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Instead of finishing this post, Anette and I snapped at each other in the morning rush to get the kids to the barnehage, and by the time the car was back in the garage we were both in tears. The day got no better, as we tried both painting and making sweet potato fries to get ourselves out of our funk, and before leaving to pick them up we took a quick walk to Drafnkollen where we ran around in the snow like little kids and felt a bit better.

Dinner turned out to be a chaos like we haven't had for a few weeks, and I was still in a funk even after the kids were in bed. I lay with my head in Anette's lap and tried to work through my self-pity, and when talking about Olivia and how hard this all must be for her, I started crying again. I told Anette how it had been unnatural for me to talk to my folks several times this week without sharing what I was really going through, and she suggested that I call my mom.

I sent her a text and when she didn't answer after a couple of minutes I called her, and fortunately she was able to listen. She too was sitting in the car, having just come home from town, but Dad was inside the farmhouse being interviewed about the Sawkill. I broke down and cried and told her all my worst fears, about them attending my funeral, and how things like that should never happen, but do. I told her that I feel like we're being robbed of the chance to have our 'golden years' as a family, because our kids are so young, and we still have so much we want to do with them. We will be their heroes and their primary source of care and entertainment for at least the next twenty years, and I want to be around - and vigorous enough - to participate fully in their lives. Is this more important than work? I don't even have to answer that question.

So, Cancer, you have brought me to my knees. I began and ended the day in my prayer position from the sweat lodge: on all fours, hips opened as wide as possible like when I swim breaststroke to press my forehead to the ground, synchronizing my breathing to commune with the Great Spirit. This morning was on the third floor, our meditation floor, and this evening before bed it was on the shower floor. It's now 4:30am and I'm writing again, and I do feel better. I can hear Johannes coughing downstairs, which means we'll probably have to take him to the doctor on Monday, or sooner. This weekend should be a blast.
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As I look over my writing now at 10:00am, I am satisfied. Sunniva is taking a nap downstairs and Johannes is practicing his burgeoning language with his mommy. I am happy and have a new resolve to bring everything I have to this race, one day at a time.

Almost Halfway

Olivia arrived on Wednesday afternoon in time to drive me to my 2nd MRI, and I just got the results today - all clear, and all signs show that my body is responding well to the treatment. I went in prepared for the worst and am overjoyed at the result.

Olivia and I spent five glorious days reminiscing about our childhood, reliving memories from the '90s and Halloweens of old, which houses in the neighborhood had been the scariest (the Dantes', the Greenspans') and our most memorable costumes (my green M&M in 6th grade). We also relived the music, as she has brought my acoustic up to Troy and begun playing again. Her elegant fingers have retained their muscle memory from our lessons of so long ago, and we practiced Landslide three days in a row until she got it.

We had long talks about where we've been and where we're going, and how the childhood we shared has shaped who we are today. She and Chris seem very happy together, and can hopefully come back here in February for some hockey and swimming.

In addition to these pictures, I'll let the lyrics of Landslide capture how it all feels these days:

Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

I've been afraid of changing
Because I've built my life around you
But time makes you bolder
Even children get older
And I'm getting older too

40 days done!

Eleven summers ago I got this jersey when three teachers and I took thirteen BHS students to Morelia for what will always one of the highlights of my teaching career. I put it on today to honor Nora Searle's father, who passed away from cancer just two years after our trip. Nora's family invited me over for a dinner at their house that I still remember; she and her two younger sisters were there, and Michael and Julie. Nora was always wise beyond her years, emotionally intelligent and academically assiduous, which is why she was a shoo-in for the trip.

Fast forward to Svensedammen and the first Aktiv for Andre class that Silje, Harald and I had the privilege of leading for three years. Nora Kaalstad was the star of that class, and when I led our Artifact Share (which I brought with me from Berkeley) on a hike in their first week of 8th grade she broke down in tears as she told us what it had been like to witness her mother get sick from - and survive - cancer. Three years later, at graduation, she and her navnesøster (Nora Evertsen) gave the valedictorian speech and moved the crowd, and the principal, to tears.

I've often wondered what it takes to create such emotional intelligence, such big-heartedness, such capacity for empathy, in teenagers. I've even joked with Anette that maybe a child experiencing a parent's cancer is what it takes, so Sunniva and Johannes will definitely turn out to be extraordinary people. Last week Sunniva came with us to the hospital and the radiation team were wonderful in including her and showing her how they're helping me. Norwegians are excellent at putting children first, meeting them on their terms, and we had prepared her beforehand by reading a children's book called De Gode Strålene, with kid-friendly illustrations.

She and Johannes are now in their third day of barnehage, and his adjustment is going very smoothly. Sunniva thinks it's wonderful to have her little brother there with her now, and proudly shouts out to all her friends whenever they meet each other on the playground. Anette and I are very grateful for the barnehage's support, and our parents', in helping us get through these six weeks of treatment. Mormor is going to drive me to the hospital for my final dose of radiation today, and then Anette and I are going out to dinner tomorrow night to celebrate our eight-year wedding anniversary. Fifteen years together, hopefully thirty more to come.

Celebrate we will
For life is short but sweet for certain
Hey! we climb on two by two
To be sure these days continue

Twenty - Ten

So after a machine stop yesterday, today went smoothly and I'm all done with 20 rounds of radiation - yippee! As you can see, I've started to lose hair in the radiation zone, but shaving my head is nothing new for  this swimmer. We're off to the pool now for the 4th time this week, and are really looking forward to the kids coming back home after that. 

This week Senator John McCain was diagnosed with a glioblastoma, and a very inspirational Op-Ed was published in the NYT today by Jessica Morris, a woman with the same diagnosis. Here's to all the members of our unlucky club - let's enjoy life to the fullest, one day at a time. 

Halfway!

This morning we all went swimming together, just like 30 years ago when we first moved to Edgemoor. To mark my 15th day of radiation - the halfway point! - I did a 1500, while they did 1000 each. The shirt I'm wearing is not a coincidental choice - it's 22 years old, from the basketball team Dad coached. 

This surreal situation has allowed Mamina and Bhapu to play the role of parents again, taking excellent care of me this week that we've been alone. Before that, they learned our family routines and helped out with the kids in the early mornings and late afternoons when we needed it most. This week we've had a Norwegian lesson at breakfast every morning, and they're well on their way to becoming 'ekte Drammensere.' 

And with that, I'll sign off with a big 'tusen takk' til mine flotte foreldre❤️

Ro i sjela

Best way to start the new week, with a walk up to the pond. Anette and the kids are leaving Rauland this morning, having spent the night on their way to Haugesund and Vikedal. Mamina and Bhapu will drive me to the hospital this week, and when Anette returns alone on Saturday I'll be halfway through this stage of treatment. 

Two weeks down!

How do you celebrate two weeks of radiation? With a hair cut and ice cream! 

Swim4Life

Who'da thunk it?! My beautiful wife said that she was going to swim this race alongside me, but I never thought she would actually get in the water. Two days in a row, two thousand meters later, we're finished with the first five days of radiation and feeling fantastic. My parents are also swimming every day, and they feel great, too. Do what you love, do what makes you feel like your best self. 😄💪🏊❤️💕

Immunotherapy

  

So this is the final treatment of the day, a half-hour's infusion of Nivo/placebo, which I will get every two weeks for 16 weeks. 

Radiation

  

 

 

So it looks pretty scary, but I couldn't feel a thing. Just 5 minutes or so of whirring and the first round of radiation was over. V-Mat method is used, arcs of targeted radiation around my head with the photons calculated to be most effective where the tumor was removed.