A day of rest

 

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I am determined not to let so much time pass between posts.  Simply because it is much easier for me to stay on top of it if I don’t.  Yesterday I had one of those strange days, they’ve happened before, where I just never really wake up.  I woke up this morning to have coffee, and I had essentially slept for 28 or 29 hours straight.  Or, I guess I should qualify that just a little..  I had slept for 28 or more of the last 33 hours.  I woke up yesterday and had coffee as usual, immediately irrigated, went downstairs to make a couple of pieces of toast, spoke with hill for a moment, and then went back up to the bedroom to answer a few emails (that all took a couple of hours, and to be honest, I slept through some of that irrigation time).  I’m not sure what time it was when I woke up to realize that I was slumped over to one side sitting on the bed and that the computer had long since turned off and fallen off my lap to the other side.  One of those completely uncomfortable positions that you only find yourself in when you are BEYOND tired.   SO.  I put the computer away and lay down.

Woke for a text from my mother.  “I’m at fairway, would you like a baked good of some kind?”

“Why yes!”

Woke some time later for the delivery of said baked good, but fell back to sleep without eating it.

Woke to see Hillary, a vision, “I’m leaving now,  Study group.  Remember to take your 4:00 medication.”

“Whoa, really?  Already?  Don’t go!”

“Baby..   ”

Woke to see Hillary.  Back again!  “What would you like to do about dinner?  Your mom said that they had leftover potato leak soup..”

“Sounds great!”

Woke to Hill sitting by the bed “Dinner’s ready, shall I bring it up to you, or would you like to come down?”

“I can come down.”

I made my way down stairs for just the second time of the day, and found that it was just me and Hill for dinner.  A beautifully set table.  Salad, warm baguette, bowls of soup.  Simple and delightful.  Cleaned up the kitchen and ate some ice cream straight from the container.  Went back upstairs, fed the dog, brushed my teeth, climbed BACK in bed.  Watched an episode of The Good Wife with Hill and went back to sleep.  Slept through the night without incident (except the 4:00 alarm that Hill sets for my medication)..

I can’t explain it.  I don’t know what makes it happen.  But every once in a while, my body demands it.  It simply must have a day of sleeping and it takes it.  No change in the drug regimen.  No previous day full of exhausting behavior.  Just a day of rest.

 

 

Every once in a while lately, I walk past a mirror and realize that I don’t recognize myself.  I’ve developed steroid face!  It’s really unfair.  I feel like hell.  I feel like I’m wasting away.  I should look gaunt! Not hale and hearty!  So.  Here you are.  A little photo montage of fat face Ezra to make up for no pictures of me at all for such a stretch.

 

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98 Replies to “A day of rest”

  1. 2 posts in a week! yay! glad to hear from you so soon. always sending good thoughts your way, even when I don’t see a post. sending hugs to you!

  2. Ha haha love the photos!!!!

    Hey when your body needs that sleep, don’t fight it just go with it!. It really throws you off when you wake up though and you don’t know where you are. Seems to take me a full day to recover just from that so maybe you are the same 😉

  3. Love the photos Ezra, I was feeling verrry sleepy from your post so those were a great wakeup!! We all do typos but after the last couple of posts, I thought you were gonna go somewhere with that leak/leek soup……ha ha Much love to you and your pack, dog bliss you!! XO

  4. Huh, your website now recognises me as ‘Jenny from across the pond.’

    Good to hear from you Ez. I imagine it’s frustrating for you having you body say ‘nope, not today Buddy’ but I think it’s probably best to listen to it.

    And your endless stream of selfies made me smile bigtime.

    <3

  5. Oh, Ezra, you are the best. Thank you for posting. I agree that the combination of soup, especially potato leek, plus baguette, constitutes the perfect meal. A little saffron (my daughter calls it “that good stuff, you know”) makes a nice yellow swirly pattern. Enjoy. Keep us posted.
    Joan

  6. My yoga teacher always says to listen when our body is talking to us. Despite all your slumbering, thanks for making time to share your words and eye-popping selfies with us. I miss your foodie photos and comments so it was refreshing to read of your salad, soup and baguette supper. I will follow your inspiration and serve up the very same for us tonight, here on the west coast. Warmest thoughts for you and Hill.

  7. Honestly all I could think as I was reading that last paragraph was, “B – but, I love those steroids!!” I mean – I LOVE them. Those steroids have done great things. I want to hug those steroids. I want to have those steroids over for dinner. Hard workers. Good eggs, those steroids. I’m a fan. And don’t fool yourself, Ez – that face is ace too:) Always love to see that face. Thanks for the update.

  8. Thank you for the update. I like to call those kind of days “mental health” or “me” days. Everything usually looks better or is easier to cope with after a day of rest. Bless you dear.

  9. Your posts are a gift. Your life is a gift. You are a gift. The world is enhanced with you in it. On Mondays I light a candle to celebrate those that inspire my life as I pray for their being, and you are always included. And I don’t even know you! BIG LOVE from Tahoe Reno! You are beautiful—steroids or no…you are beautiful!

  10. I agree with Andy 110%

    “Your attitude is amazing. Good to see your face. You are an inspiration.”

    Yes you are an inspiration!

    A big hug from Germany!

  11. I echo @ JT (only from frozen Flyover Land),
    You’re a complete stranger to me and yet I literally think of you from time to time and pause to send a good vibe your way. I feel silly to confess but I worry like a mother-hen when you haven’t posted for awhile. So this posting and your silly photos were a comfort and blessing. Sweet dreams to you and yours.

    BTW: When did you teach your eyebrows sign language…? 😉

  12. I like the selfies with the bedhead. You look wonderful and I’m sure that’s strange, because you don’t feel wonderful, or even close. When you say you should look “gaunt”, it gives a real clue as to how you are feeling.
    I hate this helpless feeling; the one where I want to make this all a bad dream for you. You are so strong, kind and selfless, to keep coming here and writing for us. I hope that you are able to feel the love and admiration that I have for you and I’m sure everyone else who comes here, has for you as well. Thanks for thinking of us, when it would be perfectly understandable to only think of yourself.

    Sad Girl Out

  13. Ezra- You have your rightful place on Bobby Earle’s backside! I am not sure his butt is big enough to accommodate your greatness.
    Thanks for posting the new pics; it is always so great to see your face. Eyebrows still rule. Big Big Love to you and Hill.
    Joan

  14. Newcomer……..there was a post on my FB during the Olympics …you were mentioned and your battle. I followed the link and began reading your posts from 2008 every night when I crawled into bed. I found myself going to bed early to read longer. In no time at all i was thinking of your life as I lived my day. I thought about you..your lovely wife …your mom. The food! I see bicycles differently these days. Your posts…your ability to open up and share leaves me with this appreciation for who you must be. Reading about your hopes dreams accomplishments during illness makes me want to do better ..be better…and never forget to live in and appreciate the moment. I want to thank you for the gift you have shared. I’m checking every night to see how the rest of February has been. I see patients every day in my work and I wanted to let you know that I know I was guided to your blog for a reason.

  15. I, too, am a newcomer who was led to your blog when it was mentioned on FB – and I’m so glad to have found it. It took me many hours to read through your 5+ years of entries, and I treasured every single second. I am awed by your courage, candor, wit, and zest for life, and I can’t thank you enough for so selflessly sharing your journey. You are an inspiration and a beautiful, creative soul, and your friends and family are very fortunate to be part of your world. Personally, you have motivated me to revisit my passion for cooking, to appreciate the many things I’ve taken for granted for so long, and to find a video of you dancing (another of my passions). I know it will be epic, because when you do something, you do it right. Peace, love and hugs to you and yours, Ezra.

  16. Ezra,

    I wish I had a fraction of your attitude.
    You are an unreachable example.

    Here all is not ok and I am not showing the character and humor you have.

    My sincerest respect.

    Love

    Sarkis

  17. Note to fellow pill flask owners. Don’t take them through airport security! 🙂 I didn’t give it up though. Left the airport…mailed it home…ran back and caught my plane! Worth the effort!

  18. Hi Ezra,

    I wanted you to know, the world is a better place because of people like you in it.
    I just hope you know how inspiring you are. Thank you for being just the way you are. I wish you well and you are constantly in my thoughts.

    Cheers.

  19. Hi Ezra,
    Checking in here. Thinking about you always. Hope you are feeling well. Love these selfies–enjoy all your photos. How are the custom frames coming along? I can’t wait to frame my three Ezra Caldwell photos. 🙂 All very special. Meanwhile, I’m reading Bobby Earle’s 2014 Dana-Farber Cancer Institute Marathon Challenge Blog. Nice to see that you will be all over his ass! I’ve had the best care at Dana-Farber and I will be sending along a donation for the cause. Looking forward to your next update when you are up for it. Take care. It’s Spring, oh happy day!
    Hugs to you, Hill, and Putney. ♥
    Love, Robin

  20. I hope you and Hill know that even if we have no updates from you, you are still in our thoughts. Sending you peaceful, healing thoughts as this new spring begins.

  21. I’ve mostly been a lurker, but I want to let you know how much I appreciate you sharing your journey so eloquently. Take care and happy spring!

  22. Hi Ezra- what they all said, plus I am thinking of you every day. Hope you get a little Springtime up in NYC.
    Joan

  23. Here is the latest I have heard from another friend: (I too check and in and pray for lovely Ez and Hill everyday. This is from the guy who is running Boston and raising money in honor of Ezra:

    “I got an e-mail from Ezra on Saturday. He’s had a tough couple of weeks. His baseline pain medication has been increased so once he gets acclimated I anticipate a blog update on Teaching Cancer to Cry. I’m running the 2014 Boston Marathon with the Dana-Farber Marathon Challenge team and dedicating it to Ezra so I ping him a few times a week with updates. There was a bit of radio silence over the last couple of weeks with him, so I’m glad he had the energy to write.”

    And from another pal who stays in touch with him,
    “I spoke to him on the phone for a while yesterday. He’s got good days and bad. He’s coping with a new level of pain meds, but optimistic he’ll get back to normal in a few days. The house is chaotic with visitors, and we hope he gets more peace when his wife gets back in town. He’s eager to feel well again, and able to get back into the shop.”

    Ezra was such an inspiration to me during my chemo. I read his blog and followed his chosen path while I was doing the same out here in the high sierra mountains. I am hoping that he is able to read our updates and find strength in all the love here. I carry my little pill flask, number 56, and squeeze it and hope it sends hugs to our lovely friend (that I have never had the honor of meeting in person)

    LOVE TO YOU EZRA! I will post the boston runner’s donation page. Give a little. Give a lot.

    Inside the box of my pill flask it says BIG LOVE! xoxoxo

  24. Here is the website again to support our Boston Runner in honor of Ezra! (he has also posted it here in his blog and I don’t know if anyone even reads this far down the list in the comments..I actually do…)

    http://www.rundfmc.org/faf/donorReg/donorPledge.asp?ievent=1078599&supid=394706547

    So Ezra/Hill/Pugs….if you close your eyes, I hope you can see the love and light being sent from the special mountains out here in Nevada. You are such a present to us…and a reminder to stay present. Today is a gift! BIG LOVE

  25. Thanx JT for the update =) Thinking about you Ezra, Hill & PutPutButt….. sending all the positive sunshine spring filled vibes I can from AZ…..Hoping your meds are getting more balanced!~ much LUV M

  26. Thank you.
    You have no idea who I am, except that I’m somebody in f*****ng Bogota Colombia who is healthy and profoundly inspired by your example and mettle.
    I’m 53 about to be 54 with a 6 year old for whom I want to be around forever, only your story keeps reminding me how fragile it all is and brings me back to earth.
    Ezra, I know my thoughts or words make no difference, your illness will continue on relentlessly to its ultimate conclusion, we will all get there some day, but it’s just that your courage and profound sensibility makes it such that to some like I every day is just that more precious.
    This is the first time I write you, who knows, you just might never read this, but all the same your struggle has touched some like I very deeply.
    Your legacy will live with many, and should many live like you.

  27. Wish you all the best Ezra and Hill. Your photos and your writings have been such an inspiration over the years. Thank you for sharing your story. The bright parts and the darker ones.

    Thanks JT for the update.

  28. Just saw a picture of a white pibble girl and she reminded me of Putney… which made me think of you and Hill as well. Big love from NoDak, where we’re about to have 5-8 inches of snow dumped on us to celebrate the arrival of Spring. I’m so glad you’re seeing the seasons change again. <3

  29. Ezra, A friend of mine introduced me to your blog about two years ago when I was going through chemo. I may have over-done it by reading about one years worth of entries in a single sitting. It took me a while to come back. About six months after my last treatment (late 2012) I timidly snuck back to see how my new brain would handle your medicine. I hope you understand on the deepest level what your blog has done for the souls of the group no one wants to belong to but are somehow grateful they do.

    As you know, the actual words from friends, family, and admirers don’t really matter but only that something was said. You are eloquent, I am not. But to sum it up in one word I would just say “ThankYou.”

  30. Check in at least once a day….think of you all the time.

    Wearing my FastBoy jersey today, and as always, got pill flask # 63 in my pocket.

    SPP

  31. JT….thank you.
    Bobby….GOOD LUCK with your run.
    EZRA….(((((((((((((((((((((((((((((((((((((((BIG LOVE)))))))))))))))))))))))))))))))))))))))))))))

    Sad Girl Out

  32. Hey man Just checking in to say you and Hill are in our daily thoughts and that we hope you are getting on top of the pain, stay strong like i know you will and keep the fight up
    sending love from the UK
    D&G xxx

  33. Just saw the 4/5 photos on ezracaldwell.com. As always beautiful and amazingly expressive work. Thanks for getting those up. My thoughts are with you and Hillary. Paul

  34. Good Day Ezra! Very nice to see your new photography. So sorry you have not been well, I hope these signs of your pictures are your return to feeling better. You are in my thoughts every day and I’m relieved to hear about any news here. Hope to get in to see Bobby Earle run Dana-Farber Marathon Challenge. He runs for you–we are all with you every step of the way.

    Much Love ♥ Robin

  35. Good morning Ezra,
    Thanks for putting up the new photos. It is good to see your face. I hope you are feeling as well as possible.
    Another helping of Big Love to you, Hill and Putney,
    Joan

  36. From Bobby Earle’s blog post of today, 4/11:
    Like me, you’re on pins and needles waiting for his next blog posting (which I was told yesterday by Ezra that he is working on at the moment).

  37. From Bobby Earle’s blog post of today, 4/11:
    Like me, you’re on pins and needles waiting for his next blog posting (which I was told yesterday by Ezra that he is working on at the moment).