Get it together…

"Get it together Paul - we can do this!"

“Get it together Paul – we can do this!”

This has been a rough week, a really rough few days.  I am still working on a positive post, and will finish it as there is so much good for me to write about.  I have so much support, love, help, and care and I have an excellent team of health care professionals working on my cancer.  I know and feel the love and all of the good, but it is hard today.  The last few days have been terrible.  My treatments are not going well, we don’t have a firm plan yet, I am tired, cold and feeling sorry for myself.  And through my whining I keep asking:

"Why is this so complicated?"

“Why is this so complicated?”  Hardware supporting my spine that is causing radiation issues.

On Wednesday I started at UWMC and can only describe it as a disaster.  I was scheduled in the evening and was looking forward to being out relatively early as I had been invited to dinner by a new friend, Pat.  I am not sure if I was the last treatment in the day, if staff were in a hurry, or tired, whatever, there are lots of reasons why things can go wrong, with both complicated technology and busy, technical jobs. Whatever the cause, it went wrong.  To make a long story short, I got “stuck” in the machine.  I learned afterwards that the technicians had not checked that the collimator could clear my body when it moves as the gantry spins around me.  This machine has a multileaf collimator on it, and it can move on the gantry to allow for a volumetric art treatment, allowing the rays to enter me from different angles.  A collimator is essentially an aperture that shapes the radiation beam*. Of course, on equipment like this there are multiple safeties built in, so when the collimator collided with me the machine locked up (not really the collimator but the spring loaded collision ring attached to it).  I was lying on a board with my arms over my head, unable to move and the machine was stuck (I’m sure that’s the technical term).  The technicians re-entered the room and talked about the issue, tried to sort it out, phoned my doctor, and then deliberated some more.  I don’t know if they thought I was deaf or were too caught up in sorting it out that they forgot I was there, or just don’t think it is important to explain what they are doing to patients.  At any rate, they couldn’t finish the treatment, so they took me out of the machine, told me the doctor would talk to me tomorrow and sent me home.  I was tired, cold, burned and covered with tape, bbs and markers.  I know that I should have spoken up, but I was too tired and I am too eager to please.  I did go back and ask if I (or they) could take the tape and markers off and they said to leave them on until the doctor saw me.  I walked out the doors of UWMC into the dark, flagged a cab and headed home.  I didn’t have the energy for dinner and I knew I’d be lousy company.  I just wanted to go home, have a drink, smoke a cigar and cry.

As we crossed the lake I ruled out smoking and drinking alone at the cancer house (not good optics), and as we went down Eastlake I pulled together my courage and stopped at Pat’s apartment, another very good decision.  Pat lives in Boise and is here for a few months for proton therapy.  He has a mate visiting from England, the two of them made dinner for a few friends who live in Seattle, and kindly included me.  The food was incredible and the conversation lively and fun.  I was a listener more than a contributor and soaked in the warmth and the energy.  By dessert I had forgotten about linear accelerators and radiotherapy (these two guys spent the day making chocolate éclairs from scratch. How awesome is that?), a great end to a lousy day.

My day at UWMC on Thursday started with Dr. Tseng explaining what had happened on Wednesday night.  She said she was “miffed’ (she is the sweetest doctor I have ever met, but  apparently can get very angry), apologized (although it was clearly not her fault), clearly explained what had happened (as much as I can understand anyway) and told me that she would ensure that the staff know not to ever talk behind a patient’s back again.  Yikes.  It was not that big of a deal, s@#t happens, but I am glad that I wasn’t imagining that is was handled poorly.  That done, we did a series of plane films to see if we could determine a better plan (we were hoping to avoid the radiation from yet another CT scan), unfortunately we couldn’t get enough information from them so we also did a new scan, number 7.  In order to do the CT scan I drank more barium (what is barium?  I am scared to google it because I am pretty damn sure that it won’t say – “drink daily for optimum health”), waited for it to percolate and got back in the machine.  Both Yolanda and Josh (the great dosimitrist who has been working on my case) were there.  They designed a new belly board that should help spare my frontal organs, I got more tattoos, bbs and markings and they seemed to think that they got the information that they need to build a new plan.

In the early afternoon I started treatment # 15.  It is important to note that the only thing I had consumed since Pat’s dinner was barium.  No food, which is okay; no coffee, which is not okay.  Note to the technicians:  Let me have a coffee and we will all be friends.  As we again had new positioning and markings the set-up took longer than normal.  This will seem whiny as I essentially do nothing during the set-up and treatment, but having my arms above my head, face down on a board, not moving for an hour, uncaffienated, sucks.  My margins for breathing during treatment are 5mm on the front of the vertebral body for bladder, 1 cm on sides and 4mm against the spine.  That isn’t a hell of a lot of room to move, so every breath I take scares me.  Did I mention that I had not had a coffee yet?  Two in the afternoon, immobile, scared and uncaffienated; seriously, can this get worse?

After an espresso, I rode the shuttle to SCCA House.  Fatigue has caught up with me this week, and barium and all the other stuff I’m taking keep me near a bathroom (how many good restaurants in Seattle and my diet consists primarily of miralax, sennakot and colace?).  I had outlined a positive post yesterday, and tried to fight the fatigue to write it.  However, I lost and instead cried myself into an afternoon nap.  I had made a reservation for dinner at Cuoco, but woke up at 530 determined to cancel it.  I waivered and fell back sleep until 645, too late to cancel, so I dug deep and walked over to the restaurant, which woke me up.   I met a friend from Kelowna (Stuart) and a colleague of his.   It was a night of wonderful conversation and good food, although I spent too much of it whining about my woes.  I am so glad that I went; it reminded me of all that is good.  Stuart and his wife, Leigh-Ann have put countless hours into the benefit concert that is happening tonight in Kelowna.  They are incredibly generous people and Stuart is a great dinner companion, as is his friend Jim.  They even let me share the cream filled, caramel covered donuts they ordered for dessert.  Éclairs at Pat’s, Tom Douglas’ donuts, why am I still whining?

And here I am at treatment #16.  For my last treatment at ProCure on Tuesday my new friend Jane drove me and took me grocery shopping on the way back.  She is incredibly generous and has been very helpful (although I think the green drink powder she encouraged me to buy at Trader Joe’s will take some getting used to…) but for today’s treatment I am taking the shuttle. It is efficient and I am such terrible company right now.  Today we will treat with the original outline while we wait for the new plan from yesterday’s scans.  Because of Wednesday’s issues my finish date has been pushed back to December 31st.  I wish we could keep going over the weekend, but I also need a break.  Tomorrow, the Metropolitan Opera is presenting the Barber of Seville, and there is an HD simulcast here in Seattle (This takes place in most cities, I go in Kelowna.  Look it up, they are fabulous performances, inexpensive, and depending on your time zone a great way to see Met performances).  Opera and yoga have been my mental escape this week.  I sure hope my neighbors like Peter Grimes; they’ve heard all two hours and 22 minutes of the 1958 Convent Gardens performance three times in the last 24 hours.

I don’t want to be negative.  I know that I have so much to be grateful for, so much to be positive about.  It is all good, but I also just really want to cry.  People in Kelowna are having a concert tonight to support me and my family, dozens of people are playing, organizing, working, attending, contributing, I am so grateful, I need to stop whining and GET IT TOGETHER.  Even Paolo is reminding me of the fighting spirit we had when we were determined to eradicate Gordo (Gordo’s my tumor – long story).  Okay, get my mojo back and go do treatment #16.

Gordo, as Olivia lovingly calls my scar and tumor.

Gordo, as Olivia lovingly calls my scar and tumor.

*please do not assume that any of my technical explanations are accurate.  I likely have misunderstood most of what has been explained to me, and in many cases may just be making up words.

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24 thoughts on “Get it together…

  1. I’m sorry you are having such a rough time with treatment. Hopefully things will get better with the new treatment plan. That is great that the city of Kelowna threw a benefit for you. I just live over in the Vancouver area. Did the Cancer Clinic send you to the US because your cancer is so rare? I’m curious as to how that worked.

    From one former cancer patient to another, hang in there even though treatment can seem like a long endless battle.

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    • Hi! It is rough but I think I have it better than 99% of cancer patients… I required proton beam therapy as the tumor was right on my spine. Fortunately it is available in Seattle so I am not too far from home. I hope that all is well with you – thank you for reading and sharing.

      Liked by 1 person

  2. Cry as much as you like Paul! Good for the soul! ( You might hear my father saying ‘Your bladder is too close to your eyeballs’)
    Just keep on writing down all your thoughts and feelings-makes a good read!
    Love prayers and positive thoughts from warm and sunny Freshwater NSW Australia

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  3. Paul, your journey has been filled with ups and downs and it’s only human to experience what you’ve been feeling. You’re blog is so well written filled with true, raw emotions. Thanks for letting us be a part of your journey! We are rooting for you and know you’ll beat this!

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  4. Hi Paul – Thinking of you from San Diego, tonight. In awe of your strength and courage. Stay positive and all of this will be a bump in the road one day in the future. Ramona Gaerin (Yuhasz)

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  5. Keep hanging in there, Paul. We’re going to the concert tonight and there will be a lot of energy coming your way!! Karen and Bert

    Sent from my iPhone

    >

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  6. Paul, I hope you do not mind me reminding you of what I used to say to all of you: “tears are solvent for the soul”, even though I walked around in my old running shirt that said: “Suck it up princess”. I think both you and Paolo have it right! I do not doubt for a minute that you have the resiliency to do this and that it is also tough to do.

    We will have you and your family with us at the concert tonight. Most of the world’s great contemplative leaders say that “love” is the meaning of life. You have somehow managed to attract your fair share of it.

    Liked by 1 person

  7. Paul, I’m sitting in my car watching the freezing rain drop on my windshield. I am waiting to meet your friend Leigh-Ann and help her set up for the silent auction tonight.

    I haven’t met her yet, but I’m looking forward to that in a few minutes.

    Thank you Paul, for being so authentic on this adventure. Thank you for sharing the realness of life as it is, not as you wish it were, but as it is.

    My husband Don and I stand along side of you and your family in prayer and hope for a better tomorrow.

    But for now we want you to know that we care about the realness of life and all that you are going through.

    With support and prayer, and whatever else we can do.

    Upward & onward, lr

    >

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  8. Paul, repeat after me: to cry is human…to suppress tears is foolish. Crying releases tension, reaffirms humanity, and, most of all, anoints the soul. Let the tears flow. Enjoy them. Bless them. They are part of the person we all love.

    Liked by 1 person

  9. Paul, you are incredible and your determination to beat this disease shines through in the tone of your post. Thank you for sharing your journey. I am praying for you.

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  10. Paul,
    We are blessed with the ability to have feelings, including sadness (or some stronger version of the word). Crying is a way to deal with sadness. Crying releases tension from the body & soul, so go for it!

    No excuse for the bad bedside manners, though. I’ve had the radiation machine quit on me in mid treatment but it wasn’t hovering over me when it stopped. Good thing the doctor got wind of your session & did something about it. And don’t worry about trying to please everybody. It is YOUR body!

    Isn’t it great how being around others (in small numbers) can boost the spirit when we’ve had a crappy day? Hang in there & let your spirit be boosted, Paul. You may be hearing from some of the others from our first workshop, who are with me in the mindfulness workshop. We were talking & someone wondered how you were doing, so I reminded them to check your blog. Hope they do write.

    As always, sending you positive healing energy! J

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  11. A little whine is good for your health (or was that “wine”?) Whichever! Whining and crying are like eclairs and donuts. A steady diet of them wouldn’t be good, but once in a while, you just need to indulge without guilt.

    GREAT benefit concert last night BTW.

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  12. Thanks for the update Paul. We continue to think of you daily and are amazed at your strength and perseverance – You Will Do It!
    Thinking of you and your family
    Love Bob and Joan

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