Welcome to Seattle

Welcome to the next phase of my journey.  I’m in Seattle and undergoing radiation.  This week has been busy, emotional and exhausting, and I’ve been carried through it by the support I have received from family, friends, health care professionals and strangers.  I am two treatments in now and counting down the days until I am finished.  It looks like December 30th will be my end date, and now that we have turned over into November it doesn’t seem that far away.  I have added a countdown calendar to this site so that I can watch the days tick off until I go home.

Much of this week has been spent in additional diagnostics and treatment planning appointments.  A week ago I saw my surgeon in Vancouver, where we did another set of x-rays, confirming that the pins and rods in my back are securely set in the bones that they are screwed into.  One of the highest risks of my radiation is bone fracture or decay (osteoradionecrosis).  While unlikely, if this was to occur at a site where my hardware is secured it would be problematic (to put it mildly).  Unfortunately, osteoradionecrosis can occur up to year or more after radiation so I will need to monitor this for a while.

My radiation oncologist has recommended adding a photon radiation regimen into my plan, which has delayed the start of treatment.  A major reason for coming to Seattle and the ProCure centre was to avoid photon radiation, however, my hardware, a combination of titanium and chromium is making this much harder.  Apparently we know how protons react to titanium and to chromium but it is more difficult to accurately determine how they will react to an alloy. In addition, the hardware will decrease the protons efficiency in radiating close to the tumor site.  In order to get a high enough radiation dosage in these areas we would need to treat with a dose that would lead to an “unacceptable high dosage to the normal organ structures”.  Yeah, that’s not good.  So, we are adding in photon radiation as it doesn’t react to the hardware and will make it easier to achieve the desired dosage in those areas with less impact on surrounding organs.  Of course, photon radiation comes with a much wider range of side effects.  In addition, photon radiation is not at the same hospital, and is on different equipment, so new CT scans are needed.  And, of course, in the States, new treatment at a different facility meant new financial issues.

But, I’m here and it’s underway.  My parents drove me down on Monday and stayed with me for the week to get me to treatments and help navigate this process.  momanddadleaving271014A HUGE thank you to them for all of their help!!  Seven hours of driving on a beautiful fall day got us to the Seattle Cancer Care Alliance House and checked in.  I am very happy to be here. The staff are so accommodating and there are a number of amenities available on site.  While I am able to stay on my own in a motel, hotel or an apartment for right now, as my side effects kick in this may not be the case and it will be good to be here.  By being here, I am meeting other patients who are going through the same or similar things.  The ProCure Center is also working hard to help me make connections.  They have a dinner for patients every Tuesday which I went to this week with my parents.  It was a chance to meet others and ask questions.  I feel a bit like I am becoming part of a cancer community.

Much as it is great to be joining a new community here, it was very difficult saying goodbye in Kelowna on Monday morning.  It is easier to be away knowing that so many people are supporting me at home and wishing me well, however, when I said good bye to Stella Sunday night it was very tough and driving away Monday was emotional.  The night before we left there was a Hallowe’en party at Summerhill Winery with proceeds to support me; knowing that my former colleagues were thinking about me and supporting me lifted my spirits for the trip down.  All week emails, indications of support and help kept coming in, making it easier.  I am tired, really tired, which I think is anxiety, fear, and emotion (although all the barium sulphate I drank this week can’t be good either) and the messages of support gave me the energy to move forward.  I have only been gone a few days but I miss home a lot; my family, friends and my darn cat.  At least skype and text make it easier to be connected (although the cat will not accept my skype invitation).

On Thursday I had my first proton treatment.   Here is my traveling companion, Paolo, testing out the bed.  20141031_193345My sister in law gave me Paolo while I was recovering from Surgery.  He has been with me through recovery and came down here to support me (bringing with him Tasha and her family’s love and support).  The treatment was very long as they had to adjust the bed and set up alignments for future treatment.  After that I did a new contrast CT scan.  The current positioning that we have provides a very large dose of radiation to my bowels and we are trying to see if having my bladder either full or empty will move my organs enough to spare this.

University of Washington Medical Center is a massive enterprise with multiple campuses.  It is one of the top ranked hospitals in the US for cancer care and treatment.  On Friday I checked in at UWMC to organize my photon radiation care.  After the mandatory blood draw I went through a battery of paperwork to arrange for finances and cover the hospital and its staff in every possible way from lawsuits.  I met with Dr. Tseng (she works at UWMC on Fridays so I have continuity of care with her).  We went through why we are adding photon treatment and the side effects.  I’ll spare you the details but suffice to say that phrases like “this will require exceeding the maximum recommended radiation dosage to the large bowel” and “we are trying to spare your kidneys and bladder” are not encouraging.  Following this I had my sixth CT scan, led by a technician in a court jester uniform (really? I am supposed to trust you with radiating my lower abdominal organs when you are dressed like that?).  I drank more barium sulphate and a litre of water and was on the table for fifteen minutes or so while there was yet another discussion about whether my bladder should be full or empty.  This scan should be the final piece that Dr Tseng and the dosimitrists need to finalize my treatment plan.

My time at UWMC was followed by my second proton treatment.  The staff at ProCure work very hard to make you feel comfortable. While it should be relaxing – “just lie still and don’t move.” – it is anxiety inducing.  The bed is hard, the equipment is loud, there is clanging as the apertures are changed and you can hear the cyclotron whirring as they charge the proton.  In addition, if this is so safe, if the proton just radiates particular cells and not the rest of me, how come just as they zap me the technicians leave the room, close huge, heavy doors and hide in another room?20141031_193416

This journey has started. Two of 41 treatments down.  I feel good.  I went to a yoga class at Bikram Seattle, I’m walking a lot, and I did some weights on Thursday morning.  I need to be active.  Studies on prostate patients show a direct inverse relationship between activity and fatigue during radiation; the more active patients are the less fatigue they experience.

Thank you for reading this.  I will keep these shorter and more frequent as I go forward.  It is really helpful for me to know that I have others with me.  The support and encouragement that I have received is simply amazing.  Thank you for all of your kindness.

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20 thoughts on “Welcome to Seattle

  1. Thank you for sharing your story. I can’t even imagine what you are going through but you write about it with such detail and hope, that I can feel what you are going through. You have a positive spirit and your words will no doubt help others going through this. Bless you!

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  2. Well well well our Halloween Proton! Thankfully this new phase of treatment has begun and we so value your postings and helping us make sense of this complicated treatment 🙂 Keep the humor coming and and our hugs and love for the tears, We love you and I’ll work with O and S to develop Pippa’s skyping skills. It’s a new week! xo

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  3. Paul, your were so courageous through this crazy last week. Hopefully because you are doing this treating chordoma will get better for others.

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  4. Hi Paul – just checking up on you 🙂 It was so great to see you at the wedding (I’ve got a great picture to send you!). Sending you lots of love and good vibes!

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  5. We are thinking of you Paul as you continue on this very difficult journey.We appreciate receiving the updates regarding your progress and look forward to seeing you in Kelowna in 2015.
    Love Joan and Bob

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  6. Paul just put yourself back on that surfboard, or sitting on Freshie Beach or on Manly Ferry on Boxing day! Lots of love prayers and positive thoughts from afar!

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  7. Your super-human courage is an inspiration to all. I sincerely doubt that I could face any of the hurdles you have surmounted knowing the even tougher challenges to come. We are proud of you and proud to call you “me mate”!

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  8. Hi Paul

    I am impressed by your courage and how you look at tomorrow. With that kind of positive thinking you WILL get better. I am thinking of you every day, if there is anything I can do for you let me know .
    Please take care and we will see you soon again.

    Klaas

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