Friday, September 25, 2009

Downs and Ups

Back again! We, Diane and I, have been through a very rough period both physically and psychologically. My weakness continued and early this week I developed bleeding in my nose and mouth. Luckily that went away - but at the same time I was so week I couldn't stand up. This lead me to become extremely depressed.
We went to see my surgeon to find out about the bleeding and the white fungal type stuff in my trachea's stoma (the hole in my throat.) The news was quite simple - the disease has progressed and the white area is disease with perhaps an superficial infection, and the bleeding was coming from more disease at the back of my mouth & nasal passages.
While this may sound terrible, it was good to know what was going on.
The surgeon suggested I have a "peg" (feeding tube) put in to avoid using my mouth for food. i decided that I didn't want another surgery now and would add the weight orally.
The remarkable thing is that once we'd made the decision and emailed my palliative care doctor about the weakness and depression, we felt we could make a plan with his help.
Add weight with a concerted diet of Carnation Instant Breakfast Very High Calorie cans (560 cal each) mixed with peanut butter, oil, and ice cream. Start taking a stimulant, Ritalin, to make me feel stronger, more energetic, and increase my appetite. And approach my chemo Dr to go back onto chemo to slow the disease again.
Remarkably the next day I was stronger, had a 2700 calorie day, and felt like the extreme depression (almost suicidal) was lifted! Perhaps it was just the little pill - or maybe it's my natural state and I needed help getting there - but my mental transformation is so remarkable that I can hardly believe the thoughts I was having before.
My palliative care doctor, Stewart Fleischman, pointed out that cancer can do that. It can both sap your strength and medicinally create depression.
But it feels great to be back fighting!
Oh! And here's a great little discovery from last night: I can use my wedding ring to open my left eye! i take it and put in right over where my pupil is, which holds the swollen eyelids back allowing me to see out of two eyes at once!! I'll try to find rings that work even better that I can put in both eyes. It may look odd but from inside it makes the world so much brighter!
Of course, I have to tell you that our ginger cat, Poe, was very attentive throughout this whole episode. If I was on the bed, he'd be there. If I was on the couch, he'd be above me on the pillow, and he silently followed me around for several days. Very sweet! So again I say to you " Yes, it's a great day!"

22 comments:

  1. Brian, you absolutely amaze me and make me rethink my own daily irritants. Thank you for your willingness to share your story with everyone.

    I also think it's wonderful that you found such a clever use for your wedding band!

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  2. Fantastic! The matrimonial monocle rocks!

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  3. I am so glad to see you posting again.

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  4. Brian, I was really concerned about you, and so glad to read today's post! Very ingenious use of your wedding ring, and I'm truly happy that it's allowing dual-eye vision for you.

    When I look at you, I see someone who inspires me.
    Sending you positive thoughts -

    Jane

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  5. Brian, I am so very happy that you are back on an upswing.You are such an amazing man and a beautiful inspiration to everyone. Sending much love and light, Sandy.

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  6. I dont have much to add that hasnt been said. I think I will add a reference to your blog on my class blog. I dont know how to make a formal link in the sidebar yet.

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  7. I love the monocle! You should look for something really flashy next, with some shiny stones. Or perhaps mood rings? Then you can just look in the mirror to see how you're going to feel that day.

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  8. Actually, a real monocle would be very cool! And especially with the kilt! so glad you took action--I know I always feel better if I actually DO something, no matter what it is. Hang in there!

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  9. we send love and prayers from Texas. I am so glad that you are feeling a bit better. You are a beautiful, gifted man with so much to say. Thanks for the blog. I agree with everyone- the monocle is great

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  10. Dear Brian,

    I don´t know you but I used to know Diane. She´s a remarkable woman and I can see that she has found herself a truly remarkable man. My heart goes out to you two brave and courageous people!

    Love from Siv in Norway

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  11. Hi Brian:

    I went to high school with Diane and have caught up with her and now with you through facebook. My own husband has been ill of late so I have not been doing much blog reading. I just caught up with your blog today during a little down time (not too much of that with virtual 4 year old twins) and I wanted to wish you all the best in your courageous fight as well as let you know that I take my hat off to you and to Diane. You are two very special people. Keep on keeping on....

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  12. Brian,
    So glad to have you back posting & feeling a bit better! Thank you for what you're doing here. You write with such clarity & beauty.
    And excellent use of the wedding ring!! It's a good look.

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  13. Keep strong Brian!

    Your courage is inspiring.

    Best wishes from Chile.

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  14. Thank you for sharing your essence with us all. I'm going to have a better, more-appreciated day -- out with my internal naysayers and curmudgeonly impulses!

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  15. I think there are special glasses for people with ptosis (droopy eyelids) called a ptosis crutch. Perhaps these can help lift up your lids a bit.

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