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. 

Chemotherapy

 

So these little pills, in combination with radiation and immunotherapy, are supposed to cure me. I take them on an empty stomach one hour before radiation; thirty minutes after taking an anti-nausea pill. The treatment is a triple threat - chemo, radio and immuno. We found out this morning that I was accepted into a clinical trial for Nivolumab, the drug that has revolutionized melanoma treatment. 

The Stage II clinical trial is arranged by Bristol Mayers Squibb. Lab Corp Ctr for Molecular Biology confirmed the results that the doctors in Oslo had gotten; that I have the MGMT mutation that should make my body more receptive to the Nivo. Of the 15 patients in Norway who are participating in this trial, I am only the 4th with the MGMT mutation.

Camping!

  

Treatment now delayed until Monday, so one more weekend of normalcy. Told Sunniva today that I have cancer, and she was fine with it; just wanted to keep playing and was happy to accompany us to the hospital one day to see how the doctors take good care of me. Third summer in a row we've gone camping, and that is indeed something to be proud of!

Makin' Lemonade

 

When the hospital gives you lemons, make lemonade😉💪☀️

The Race Begins

 

On April 25 I woke up early (0530) with Johannes, got in the shower with him to kill time, and then went upstairs, ready for the morning routine. An hour or so later, Anette woke up and noticed that it was eerily quiet. She came upstairs and found me on the couch with my work clothes on, unresponsive. Johannes was crawling around happily - and then the seizure hit. 

Anette called 113 immediately, and stayed on the phone with them while getting advice and instructions. By the time the ambulance came, Sunniva was awake and saw the two EMTs come inside to help me. This has made a big impression on her, and she keeps asking about it. 

That day was a Tuesday, and I was supposed to compete in my fourth straight Marienlyst Open on the  following Sunday - so much for that! It ended up with a four-day hospital stay (Sunniva and Anette visited me on Thursday evening) and a diagnosis of a brain tumor, glioblastoma, which is (was) malignant and had caused the seizure.

I was still in a fog when I came home on Friday, but well enough to function and perform most of my daily Daddy duties. Anette's folks had stayed with us all that week, and then André and Elise came to stay with us from Monday night to Thursday (mostly to help with barnehage drop-off and pick-up, as I am not allowed to drive for a six month period after my seizure). 

On Friday, May 5, we got the news that my operation would be on Monday, May 15, but we still managed to celebrate Sunniva's 4th birthday in a good way despite a bout of sadness in the middle of the day. My folks and Olivia and Chris then bought their plane tickets so that they could be here for the operation and convalescence. 

They arrived on Friday, May 12, after a serious delay and layover in Lisbon. Chris arrived the next evening, just in time for the Eurovision finale, which Portugal won for the first time in 50 years. We laughed our asses off at the ridiculousness of it all, which was the very best medicine in a surreal situation. 

On May 15, Anette and I drove very early to Oslo, where I was scheduled for brain surgery to be performed by two of the world's experts, Pål Rønning and Awais Mughal, a second-generation Punjabi fully trilingual and multiculturally sensitive; he even took time to explain everything in English - and a bit of Urdu! - to my parents. 

Long story short, the last thing I remember was the nurses putting a mask over my nose and mouth and taking a couple of constricted breaths before everything went black. Several hours later I woke up with a hole in my brain, 33 staples in a half-moon shape on my skull and a bloody bandage on top of my head. 

The first couple of days after the surgery I could barely speak, only managing monosyllabic responses to questions posed by my parents and Anette. Then my head swelled up like a balloon, and my eyes swelled shut. On Thursday I was transferred to Drammen hospital, and on Friday I came back home. Sunniva said I looked 'rar,' which is how she learned the word 'weird.'

By Sunday I was brave enough to post these pix to our BCC Boys group chat, and now it's four weeks later and I'm back to normal. I've done 3000m in the pool this week, and am ready for the next phase of this race, the biggest and most important of my life.