Friday, June 30, 2017

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. 😄💪🏊❤️💕

Monday, June 26, 2017

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.













Friday, June 23, 2017

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!

Tuesday, June 20, 2017

Makin' Lemonade

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

Monday, June 19, 2017

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.