11- 8 & 9- 2010  –  Monday & Tuesday Day  +12  & +13  

(Bruce’s Monday blog was lost in computer land somewhere, so tonight Lisa is filling in both days.)

Status: 7.75/10. Life is still a big pain in the mouth – literally.

Events: Monday morning they loaded me up with platelets in anticipation of the surgery to reinsert by Hickman catheter.  The procedure went very smoothly and I got back to the room by mid-afternoon.  There to greet me was physician and Seattle friend Sam Sharar, who was in town for a meeting.  He brought the essentials- newspapers, Sports Illustrated and US magazine! We had a brief visit and he was able to reassure Lisa, still nursing her sore throat at home, that I look good at least.

  Swallowing has now become totally impossible.  I am hooked up to nutrients through my IV, because I cannot eat or drink. The doctors have also increased my pain medication – I still administer it with the push of a button.  Mostly it appears to do little but knock me out for a while.

   Lisa did manage to slip up for a few hours on Tuesday (again wearing a mask and sitting a good distance from me). The first thing she noticed in my room was a loud hissing noise.  That is the sound of two suction devices, similar to what you might find in a dental office.  I use them to suction the saliva build-up from my mouth, because I cannot swallow it.  Unfortunately a side effect from all the irritation in my esophagus and mouth are hiccups.  I’ve had them on and off (mostly on) for two days now.  One of the social workers told me this is not uncommon – yet another thing they don’t tell you until it is upon you.

Comments:  On rounds today my attending doctor commented, “He feels miserable, but looks good on paper.”   At least that’s better than looking bad on paper I suppose.  I am looking forward to the day when I look good on paper, and feel good too.  I know it’ll come – just hope it is sooner rather than later.  For now the days are dragging on slowly – it’s amazing how long the day seems when it is broken up only by naps and nurses. 

Thanks – as always – for all the comments on the blog – that’s a bit of sunshine.

 Best,

-Bruce

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19 Responses to “”

  1. Molly Says:

    Bruce, you are so strong and such a fighter. I am amazed by your strength, courage and positive attitude despite feeling so terrible. Keep fighting, stay strong.

    God Bless.

  2. Donna Hill Howes Says:

    Bruce and Lisa,
    Love and more love to you both….these dark days will soon pass, and like you….I pray the time speeds forward to easier times…..
    XOXO
    Donna

  3. Andrea Tutle Says:

    Tomorrow is 2 weeks out and counting to count up. Are you making notches on a stick or putting x’s on a calender. Though time appears to be moving slowly, it is moving onward. (Oh, this may be an opportunity for a new physics lesson on the space time continuum!) If I were a Freudian, I’d wonder if both you and Lisa are finding all this a bit hard to swallow. I’m praying you are maintaining humor even in the face of bad jokes.

  4. Jill O'Mahony Stewart Says:

    Hanging on every word, every detail of your journey. You are constantly in my thoughts and prayers throughout this ordeal. Love, Jill

  5. bob price Says:

    Bruce, hang in there friend, and keep moving ahead……
    your spirit is wonderfully inspiring, and will pull you through all these dark days. In my lexicon, you’re way past the turn around point……no way to go but ahead, & you’ll soon be out of the storm, with nothing but the memory of the fight & all the braging rights that go with a winner. bob

  6. Alpa and Ken Says:

    Bruce and Lisa, we have all been so spoiled by your blog that going a day without it was nerve-wracking. Shows both how selfish we are and what a gift to all of us your blog is. By the way, Alpa agrees that Us is far superior to People, so your friend Sam apparently made a good choice. Glad you look good on paper — that sounds like good news!

  7. Judy and Larry Says:

    Bruce
    We totally agree with Alpa and Ken….your blog is definitely a gift to all of us. We are all pulling for you and are thankful that, in spite of the way you are feeling, you still have the strength to keep us informed of what you are going through. We hope that the road ahead gets easier for you. We all continue to keep you, Lisa and your family in our thoughts and prayers.
    Keep your sense of humor….
    Judy and Larry

  8. Wendy Says:

    Dear Bruce,
    Daniel and I are really missing you. We hope that mouth starts feeling better soon. Just think of all the lobster you can have when the sores disappear! Reminds us of Tyler….
    Keep the faith!
    Love, Wendy and Daniel

  9. joel steinberg Says:

    We suffered a lot of anxiety when your blog didn’t appear for two days. It’s good to hear you look so good on paper. But one can only imagine how miserable it is to be unable to swallow. Hopefully this will soon pass. Joel and Margaret S.

  10. Rick Davidson Says:

    Hang in there, bucko. We’ll have a giant salad party when you can swallow. Without the chiggers.

  11. Catherine Says:

    Bruce, You are amazing. I have had a cluster of friends diagnosed with cancer in the past week and have shared your blog with them just for some insight. Sharing your experience is really a gift to us all – and has inspired me to use weights again! I pray for your appetite to return and your mouth to heal! Love,
    Catherine

  12. Judie Davidson Says:

    If only days would go by slowly when we are having fun. Your words always remind me to appreciate my good health. So sorry for your miserable mouth. Hugs.

  13. Kathy Shands Says:

    Alpa and Ken & Joel have expressed my sentiments. I was really worried when there was no post yesterday. Glad to hear you are and looking good on paper, although I am sorry that your mouth is so bad you can’t swallow your own saliva. Only you could rate that experience as a 7.75! Hang in there. This too shall pass. and with your great attitude, you will emerge triumphant. Love you. Kathy

  14. Laurie Samuels Says:

    Cyber hugs and kisses…. Hope you are improving VERY soon. Better days ahead! (My personal mantra)
    Laurie

  15. Howard Schoenholtz Says:

    Just finished catching up with about a week’s worth of entries. As I’ve said before (and will say again) you are a remarkable person – writing these with the combined sensibility of a clinician and a patient. It’s the kind of “both sides now” world view that should be required reading for medical students. And for ordinary people looking for a better understanding of this battle. Your courage is awe-inspiring. Those of us on Team BDD are cheering from the sidelines!
    Howard

  16. Bill Israel and Eileen Breslin Says:

    God in heaven, Bruce — you sound as if you’re stuck in a Monty Python movie, can’t swallow, but hiccups, nonetheless. If I could shoot somebody and it would help, I would. Just know we’re saying “aw, shoot” for you, from this angle, at a minimum – and we remain grateful to hear from you and Lisa, as often as you can manage it. Take care. We admire your good spirits, both of you, and want to urge you on. Love, Bill and Eileen

  17. Margot Mahoney Says:

    Bruce – I have to say it sounds miserable, and yet you continue to make us smile through all of it. Hope you can fina few things to smile about in your day, if the hiccups wil allow it. Take the medicine, rest and know that you are not missing anything exciting out here – and mental health experts say it’s good to step away from all the problems of the world for a while anyway. Just turn them off and focus on getting better every day. Love, Margot and David

  18. Sheryl Stolberg Says:

    Greetings from Seoul, Bruce
    Love you.
    Hang in.

  19. Penelope Douglas Says:

    Hey Bruce,
    I like parade magazine too! always have…ever since I was a kid. USA weekend just doesn’t cut it! 🙂 So sorry to hear about your sore mouth! ouch…you’re right about the little “surprises” along the way…the stuff they never tell you about. Look at it this way…if they told you even half of all the things that could or might happen to you…either A…you’d refuse to do it…determining that the cure is worse than the disease or B you’d stress about what was gonna happen…and that wouldn’t have made your mouth or any other part of you feel any better when it did eventually happen. Not a very satisfying answer but know that this too shall pass…and you’ll only have your blog…and your notes to remind of this misery.
    Hang in there!!!

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