So fortunate

Seattle Children's Research Center window sign

Seattle Children’s Research Center window sign

My woes at UWMC continued this afternoon.  I sat, tired and cold, wearing only a hospital gown for more than an hour, waiting for my treatment.  I had stripped down early as I needed to be fitted for a bolus (more on that later).  A nurse noticed my shivering and brought me a blanket, just as my pity party was starting in full force and as a staff member rolled a stretcher down the hall to the doors of the treatment room.  I must have looked puzzled and she said: “Oh, the patient in front of you is a child; he needs to be anesthetized for each treatment so we need a stretcher to take him back to his room.”  A few minutes later they wheeled a very young unconscious boy past me.  The therapists apologized to me for the delay and made short order of readying the room for my session.  I sat in my comfortable chair, in one of the best hospitals in the world, with a good book on my lap and a warm blanket on my shoulders and thought about the devastated family, the terrified child and the outstanding team of therapists, doctors, nurses and caregivers doing everything they could for him.  My self-pity evaporated as I was reminded of how incredibly fortunate I am to be where I am, undergoing what I am and in such great shape, which led me to thinking about Friday night.

Wow.  How else can I express my reaction to the concert in Kelowna on Friday?  Wow.  I was lying in bed in Seattle, exhausted and through the joy of skype watched a crowd of friends, colleagues, and strangers (friends to be) crowd a church to support our family.  I don’t know how many people were there, but it looked like it was standing room only, and it is not a small church.

Olivia said it all so eloquently in her speech:  We are so incredibly fortunate, so blessed.  So fortunate to live in a community that comes together to support and help in a time of need.  The music was beautiful; a huge thank you to the 19 (I think) musicians who gave their time and talent to make the evening magical, to Maestro Rosemary Thompson who MC’d the event and performed, to the many, many people and businesses that donated items to auction, and of course, to the volunteers, led by the gifted Leigh-Ann Yanow who put in so much time and energy.  Thank you, thank you, and thank you.  Thank you.  It lifted my spirits and was a truly outstanding event.

The support from Friday dramatically reduces my stress about the financial toll that this bout has cost us and our ability to weather it, and as importantly, assured me that Olivia and Stella are being well taken care of, surrounded by a loving community.  It reassured me that I can do this.  I am 17 treatments in.  In five weeks I will be going home, in the best health I have been in in a long time.

While we still don’t have a final treatment plan in place, Josh and Yolanda decided to add a bolus to my back for the next treatments.  It is important that we radiate the primary scar on my back and the two drain sites as they have some risk of cancer spread, however this is difficult.  Photon beams hit the skin with about 50% of their final dose and then rapidly increase in intensity.  If we were to radiate at a high enough level to meet the dose required at my skin, the resulting internal dosage would cook my innards, which even I know is not good*.  One solution is to trick the photons into thinking they are hitting the skin earlier so that they ramp up to the final dose (or 80-90% of it) by the time that they actually hit the skin.  The rather low tech solution to this is to lay a one cm thick piece of bolus over the area of my scars which mimics skin.  I think bolus is a medical term for “used yoga mat”, it is a translucent rubbery stuff that they cut out with a box cutter.  Dr. Tseng drew the required shape on my back with a sharpie and Josh cut it out and gave it to the therapists.  I am continually blown away by how innovative humans are.  Incredibly gifted people came up with radiation therapy and designed these complex machines.  Brilliant and trained therapists operate them.  Someone, seeing a problem such as this, said, “Hey, what if we put a chunk of rubber over the skin.”  Brilliant.  While this will ensure that we radiate my incision and drain sites to the desired level it also guarantees that we will burn the skin over a large area of my back.  I’m not five and I’m walking in and out of the room on my own power, I can deal with some skin irritation.

Once I was on the table and had the yoga mat stuff on my back the treatment was smooth and easy.  They pasted some sensors on my skin to measure radiation levels (with all of the  markings, crosshairs, stickers and the sharpie outline of a 10” cross on my back I do attract some attention at yoga), but even so it was my shortest treatment so far.  I have stopped golfing as a meditation and instead am recreating walks that I am familiar with.  It is peaceful, and rhythmic (I was also worried about my golf game improving too rapidly – I birdied four holes in a row and eagled a par five last Tuesday…).  Yesterday I “walked’ from #6 Marlborough Avenue to the beach at Freshwater, a walk that Stella and I did so often in Australia.  I got to the beach with a few minutes to dip my toes in the ocean before treatment ended.  No time to stop in town center for a meat pie or ice cream.

I am still walking as much as I can outside of the room.  Fatigue is catching up with me fast and I need to stay ahead of it.  I dug deep on Sunday to not spend all day in bed.  Once Marshawn Lynch made his spectacular third quarter carry and a Seahawks victory was assured I walked downtown and then up Capitol Hill.  This is such a beautiful city with so many diverse neighborhoods.  The dozens of independent coffeehouses, bars, shops and restaurants reminded me that Small Shop Saturday is coming up, so go out and support your independent shop owners.  These are our neighbors, friends and soccer coaches who get up every day to unlock the front door and invite us to share their dreams.  They are hardworking, resilient and maybe foolish men and women who are the backbone of our downtowns and neighborhoods.  Ensure that they benefit from some of your holiday spending.  They create community by sharing their wares and opening their doors to us.  If I was at home I would be stopping at Mosaic Books, Wink I Wear, Kelowna Cycle, Bella Vita Boutique and Lakehouse.  Here, I will walk up to Elliott Bay Books and back down to Pike St. Press.

My brother, Mark, will have to join me on the walk.  He might not be buying books here but there are plenty of places he can get a locally brewed beer along the way, including this one:

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Mark’s coming out for Thanksgiving, and we will have a great time.  If you know him I needn’t say any more; if not, you only need to know that he is always the life of the party, even when he’s alone.  There is no situation that he can’t find humor in and no one too down for him to cheer them up.  I am readying my stomach muscles for the laughter.

In addition to Mark’s company, I have so much to give thanks for on Thursday.  I’ll be almost half way through radiation, I have so many people supporting me, I have met so many incredible people along this journey, and there are crazy talented people working to make me chordoma free in just a few more weeks.  I am the luckiest guy around.

*if someone can explain the difference in usage between “dose” and “dosage” I would be grateful!

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9 thoughts on “So fortunate

  1. Wow, this is so inspiring! You’re contagious with your determination, resilience and gratitude and I learn a lot from your experience.
    I do hope more people who may be in the same journey, have access to your blog, and benefit from it.
    I’m happy to follow the treatment progressing successfully.
    Enjoy Thanksgiving with your brother!

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  2. Lyle and I were so amazed (though not surprised!) by the incredible turnout on Friday night. It was truly a packed house, even with the first snowfall of season! We had two elderly women sit next to us, and they turned to Lyle and asked “So, who is this ‘Paul’?” I didn’t get a chance to find out how they heard about the concert – perhaps they were church goers – but it was really special to see that people were attending and donating who didn’t even know your family!

    Thinking of you daily, and sending warm thoughts and support from here at home. Enjoy American Thanksgiving!

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  3. I didn’t know you were skyping . I would have waved.
    Paul, I’m the husband of one of Olivia’s “senior” students. I was really touched by the night. Great music, great mutual support. Lots of positive vibs went around the room and off to you. We donated some wine but saved the best one for you and O to enjoy at home.

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  4. I kind of forgot about the American Thanksgiving thing. I went on the airline website today to select my seat. There was only one unselected seat left on the plane so I didn’t bother hitting the select button. Busiest travel day of the year and I’m flying into a US city. If I remember right there is a brewpub in the airport.

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  5. So pleased you are back in Freshwater God’s own country. You will be back one day for the meat pie and icecream!
    Am so proud of the way you are handling all the challenges.
    Love prayers and positive thoughts from afar!

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  6. Paul,

    So glad to hear that you are feeling much more uplifted! It sounds like the concert was a real success. It’s great to have family, friends & colleagues who are caring & supportive. You deserve all that love & caring, Paul.

    I can relate to what you said about seeing the little kid in the hospital. We have lots for which we are thankful but sometimes, it takes us seeing someone else in a tough spot to realize it. I pray for the child & the parents that all goes well.

    Innovation & thinking outside the box was a discussion at one of our earlier mindfulness workshops. Aren’t we fortunate to have individuals who think differently & can come up with the skin simulating yoga mats for therapy? Do you feel it worked?

    Lisa, Glen, Stan, Sandi & I spent a wonderful 5 hours in silence, practicing the tools of our mindfulness workshop with most of our class, last Sunday. Well, David talked us through a lot of the day but there were times when all was quiet & one could feel the energy of being a collective one, trying to be mindful & relaxed. We all felt this was a good experience (even though some felt it was hard to focus for that long without verbalizing) & feel a bit saddened that Thurs. will be our last gathering.

    As much as Seattle sounds wonderful, hurry back to us after your treatments, Paul. We’d love to hear about your experiences & to see your smiling face, again! Sending you positive, healing energy. J

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  7. Mark will be such good company for Paul……

    As little kids , they were inseparable. I’ve many images of them playing together by the hour, Mark & Paul engaged in some mischief together and both of them howling with laughter. I may even owe them some of my good health:

    On one of my frequent stops at the acreage in Red Deer, I was greeted by Mark and Paul at the door. Parents were both out- just the kids at home. The boys ( about 11 – 13 yrs old.) saw a pack of cigarettes sticking out of my purse. They grabbed it and systematically broke every single cigarette into tiny little bits. They were giggling so hard, they could barely finish, but finish they did , while I stared on dumbfounded. They were quite pleased with themselves and declared unabashedly that they were merely looking out for my health. Really, boys.
    That memory would probably still have them rolling on the floor in fits of laughter.

    I don’t smoke anymore.

    Have a good visit boys! ox

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