Returning to earth

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I need to develop a new napping strategy.  My inability to be out of bed for any length of time is starting to interfere with my very limited engagement schedule.  I’m in bed at 4 o’clock on Saturday afternoon, having spent the entire day here and I could stay in bed for the night, but I need to get up as I’m meeting my parents for dinner in an hour. It has been great to have them in town this week.

Latte art at Vivace - una bella tazza di caffe

Latte art at Vivace – una bella tazza di caffe

Having them here has ensured that I limit my afternoon naps, get out of the house and go for dinner.  While I am still spending too much time in bed, at least I’m not tucked in for the night at 3 o’clock.

I needed the sleep today as I was up all night again; not out of bed, but up.  The nerve pain in my foot seems to be worsening and interferes with my ability to sleep.  I don’t notice it as much in the day, but it wrecks my sleep, so I end up constantly exhausted and napping whenever I can.  I do have a drug that I should take to help with the pain and get me to sleep (amitriptyline) but I am taking so many medications already that I am reluctant to add one more.  I’m taking eight drugs, four of which are to manage effects of other drugs; I need to decrease my meds, not add to them.

Today was to be an opera day, the Met’s HD live broadcast of Die Meistersinger von Nurnberg.  I was looking forward to James Levine’s conducting, but at a six hour running time I know I wouldn’t have made it through it; I haven’t been out of bed that long in three weeks.  There is an encore broadcast in February, maybe I’ll be back on a normal sleep schedule by then and up for a Wagner marathon.  I am really looking forward to January 17 because the live broadcast that day is The Merry Widow with Renee Fleming.  It should be fabulous, I can definitely stay up for three hours and I’ll be seeing it in Kelowna!  If you haven’t been to one of these broadcasts think about taking this one in – they take place in about 3000 theatres around the world – 1pm curtain in New York, so whatever that is in your time zone.  It is great for those of us on the west coast and a very early start to Sunday morning if you are in Sydney.

Opera aside, I need to figure out napping around the Seahawks schedule. Last Sunday I napped for halftime and the 3rd quarter, which worked well, but this is a home game.  After spending today in bed I hope I’m okay to be up for it.  I’ll see my parents off in the morning, go for a long walk (Carabiner Coffee have finished renovating the vw van and it will be in Ballard tomorrow so maybe I will check that out) and then gauge my energy level.  I have an offer of tickets but they are very high up and I really need the TV commentary; while my support is strong my technical football knowledge is about an inch deep.  I know more about the ownership structure and valuation than I do about what happens on the field. So it’s a toss-up, the ticket will be wasted on me if I’m too tired, but I would really like to see a game here, especially a win over the 49ers, which it will be (34-18).  The Rams did not help out on Thursday night.  Seriously, six points, not a single touchdown in the game, what was that?

Twelve radiation treatments left, 29 done, almost the three-quarter mark.  Apparently this is the highest mental stress point for astronauts on long missions.  You are on the home stretch but there is still some serious time to do.  It is when depression sets in.  Okay, so I’m not exactly an astronaut but other than years of training, education and skill development, incredible physical shape, mental discipline, resilience, lightning fast reflexes and perfect eyesight, I could be.  And if I do get out of bed I’m going to mix up some Trader Joe’s Super Green Drink Powder and pretend I’m rehydrating food on the Space Station.

Less than three weeks. Of course I will make it through, but I think that this is going to be my hardest week.  I am experiencing an increase in side effects and I’m alone, but Olivia and Stella will be here next week, and I’m feeling strong.  If I can fight through the fatigue and ensure I am getting enough activity, enough yoga and walking, I will be okay.  Physically I know what is happening and I think I am strong enough mentally (delusions of space travel, a lot of time talking to Paolo while decorating my room for Christmas and feeling bad when I reject suggestions from the Microsoft Word spell checker aside).

Paolo has finished this book, but we still have no idea who it is from.  Did you send it to me through UWMC?  The staff in radiation oncology are curious!

Paolo has finished this book, but we still have no idea who it is from. Did you send it to me through UWMC? The staff in radiation oncology are curious!

I also have a tremendous amount of good reading to do to keep me distracted when I am not being zapped.  My eyesight has dramatically changed since I came to Seattle, so reading is a little challenging but not enough to stop doing it.  Dr. Tseng thinks that this is unrelated to radiation and is because I am getting old, a diagnosis that I reject outright.  In my effort to discredit this preposterous suggestion I discovered that the first listed and second most common side effect (after drowsiness) of gabapentin is blurred vision and my issues started after I dramatically increased my dosage of this drug, so I am going with that.  I’ll see my optometrist when I get home and I am sure that he will either concur with me or else find a gracious and diplomatic way of letting me know that he agrees with Yolanda.  I think I have fifteen books I’d like to get through before I go home, so I need to keep reading but I don’t think it is going to help me follow the ‘hawks if I bring a book to the stadium.

In October Dr. Tseng carefully outlined the potential side effects of my radiation, and unfortunately she is being proven accurate (redeeming her after the ridiculous ageing assertion).  My bowels, which were alternating between no activity and constant activity have decided to land on the side of constant activity, which makes it hard to be too far from the house.  Fortunately, the nausea that came up last week (pun intended) seems to be leveling off and is manageable.  The burn on my back has worsened, which Yolanda wants.  It is important that we are getting enough radiation to the scar site, which is a high risk area for metastasis.  On Thursday we added another layer of bolus which will ensure the radiation is at 100% when it hits my skin.  Apparently the skin burning is cumulative so it will increase dramatically over these last sessions and will continue to increase for a week or so after I am done, a little going away present from the Synergy C team at UWMC.

Other than the skin issue, I am really expecting to be 100% within a few weeks of going home. Activity will defeat the fatigue and the bowel problems will sort themselves out.  Long term, I don’t know what the issues might be.  Very little is known about the effects of proton beam therapy (pbt) and chordoma itself is poorly understood.  I have agreed to participate in two research studies, one for the University of Washington and Seattle Cancer Care Alliance, together with the Proton Collaborative Group in Indiana which is a lifetime tracking review of pbt patients in an attempt to learn more about the long term effects of pbt.  I have also entered into a tumor tissue banking and research project with the National Institute of Health and the Chordoma Foundation in an effort to learn more about chordoma.  I am impressed with the work of this relatively new foundation in funding research, seed projects and awards to stimulate research into this rare cancer.  They are also on the forefront of patient education, holding conferences to bring patients together to learn about and influence research and to discuss treatment options.  I will do anything I can to help further understanding and to make it easier for others with this disease to understand it and get proper help.

While chordoma is rare and not well understood, I feel like I am getting the best care possible and that I have a very good chance of leaving Seattle cancer free.  Of course I will need to monitor myself for recurrence or metastasis for a long time but I am optimistic that I am done with it.  I am going home the healthiest that I have been.  My challenge now is to maintain the good that has come of this, stay active, eat well, be vigilant about monitoring and hold onto the really positive changes that I have experienced, being more empathetic, caring and kind.  I am a much calmer person than I was six months ago, much more present and focused.  I don’t want to lose this when I return to life on earth.

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7 thoughts on “Returning to earth

  1. Paul,
    It’s been very interesting, following your blog & it’s been very informative. Hang in there, Paul! You can do it! Who knows, you may have material for writing a book, not necessarily about cancer or PBT… maybe something around your insights or feelings.

    It’s hard to believe that you’ve been in Seattle long enough for you to be 3/4ths of the way through your therapy. However, it’s also great that you are close to being finished. Sending you positive, healing energy for you poor back & for getting you out of bed!

    I’ll wave to you as we fly over on our way to San Fran to visit Don’s cousin, who has her own health issues. Enjoy your visit with your mom & dad. J

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  2. Paul,
    Die Meistersinger Von Nurnberg at Live at the Met was fabulous! It’s my new favourite opera. You forgot to mention another benefit of watching/listening to Live at the Met in our Kelowna Famous Players Theatre is that we have a special dispensation to bring in non-theatre food and eat it while watching the opera. I dashed out to buy some sort of sushi/sashimi combo which I ate in the dark with chopsticks while watching the third act. The chop-stick-load of wasabi taught me that there is a down-side to eating in the dark.

    If you’re still in astronaut mode, you might want to add An Astronaut’s Guide to Life on Earth by Chris Hadfield to your growing list of books to read when you’re awake enough. You’ll probably find more similarities between your current reality and life in space.

    I’m looking forward to your upcoming time with Olivia and Stella because Tom and I get to care for Pippa while they’re gone. Pippa will probably hunker down on you, when you return, and make you never want to get up! Her purr may disrupt your sleep though:)

    I enjoy your posts, Paul, and marvel how you manage to keep your sense of humour and gratitude. Your cancer-free future is right around the corner now. Just a few more blocks down Misery Street! Your own bed, the people you love most and your amazing Pippa will be waiting for you.

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  3. I love your sense of humor, Paul! If you can keep that going, you’ll do well. Not sure if you have heard of Norman Cousins(I think that’s the right name) but he claims he cured his cancer with humor and laughter. There’s a book, I think. It’s also so nice to read your blog and see correct grammar! Love and prayers to you and yours. Auntie Linda/Uncle Fred

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  4. Paul, I am sorry to tell you that the odds are that Yolanda is right about the eyes. I can clearly remember the day when my eyes betrayed me and the cost of my eye prescriptions went up to pay for bifocals. I was planning to skip that part of aging but it was not to be.

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