Saturday, October 24, 2009

Oy and Oy and Oy!!

I have been absent (again) due to the various medical events that seem to roll into me like a strong wave. Recovering is harder each time. It was almost comedic.
Restarting Gemcitobin 3 weeks ago was accomplished by commitment, obviously(!), and was dependent on regaining the weight I had lost. Well, I got up to 157.5 lbs and restarted it along with a new drug (for me), Tarceva. I was sick a few times the first week and then after a short visit from my brother I went through 2 1/2 days of constant vomiting - not that I am accusing him of being so nauseating I couldn't help it - but his son had just gotten over a stomach bug several days before and we suspected it might have transferred to me in my weakened state. We stopped the Tarceva, too – in case that was cause, which we are now fairly certain of. Among other things, this is a public apology to my brother Rolf, and to Reece, too. Anyway, the very morning I recovered from that, I literally waterpicked my molar bridge out of my mouth! Bit of a panic. Went to see my great dentist, Dr. Verona (BI), and we decided to leave it out since my teeth have not met, even to say hello, in several months and I can not chew.
But as this was going on, my left shoulder sort of froze - intense pain ensued and still ensues each morning - luckily my mother bought a large moist heating pad, which has taken the edge off. Of course, it severely limits my movement.
Have I complained enough yet?! Through all this we finally got approved for Visiting Nurse Services and I have a home healthcare aid who is great! BUT, of course there is a 'but', the VNS administration is a bloody nightmare. They don't have enough nurses. They keep insisting that our insurance has to send approvals on everything, when we have a coordinator at the insurance company who keeps saying "no you don't" that our contract is different. So we tried for 3 weeks to get extra hours on Tuesday: the insurance said "yes" and VNS said "no we need insurance approval."
Next the VNS Social Worker shows up and says the insurer is cancelling our approval for home health care!!! Of course she is talking out of the wrong end of her body.
So it has been an eventful 3 weeks and I am still weak, underweight, frustrated, and starting to argue with everyone - now via Proloquo a software voice for me to type with because I can't speak clearly enough. So forgive me if I vent "F F F F F F F!!!!!!" That's better. At least the software has a good, RP British accent (mine is Public School British, but it is close enough that my friends find it comforting.
On a good note, I took a walk with a good friend yesterday - here in NYC it was 70 degrees - to the park's entrance 4 blocks away. Good company, lovely weather, a little walk. It was a great day!

11 comments:

  1. Dear Brian:

    Have you and your doctors ever considered a raw food diet to mitigate the effects of your diabetes?

    I have been reviewing this diet and I have concluded that it is logical for diabetics to explore.

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  2. Dear Brian,
    Good to see you posting again! Next time, don't put the Waterpik on full blast--those things are like freaking lasers!

    What would the world do without bureaucracy? We would have so much less to complain about, so much extra free time that we would have to fill with something, and all those people would have to try to look for jobs--which of course they wouldn't find, because there would be no need of red tape winders.

    Are you able to read much, if at all?

    Keep up the fight!
    Best regards,
    Sandy
    www.cloudsinthenightsky.wordpress.com

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  3. I have been checking your blog daily to see if you had posted and I feared the worst. I so glad you are still with us. You have lots of people who are sending you good wishes.

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  4. Glad to read your post. Keep up the fight Brian. You are an inspiration to me and many other.

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  5. Brian, thank you for your blog. I admire your writing and your spirit.

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  6. We are not looking forward to dealing with the US health care "system" when we move back next year. I cannot imagine what a nightmare it has been for you! I'm so sorry you have to deal with this on top of everything else. I hope it all gets straightened out so that you can get the care you need.

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  7. Oy is right! You're displaying remarkable restraint in your complaints. I would indulge, morning to night, with no respite.

    I wish you only the best. Pearls before wine.

    Barbara in Southern California

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  8. Software Voice ?
    Hmmmm, that could provide hours of fun - have you tried all cuss words? I wonder if there are any it WON'T pronounce ?! Can you change the accent ? If so I could see our family trying out how cuss words sound in each "voice mode."

    It's the simple things that get us through. Oddly enough when Ryan has a "SUPER MAD" put on like a cement overcoat the only SURE way I can get him to laugh is to say, very slowly, in a very low register "shiiiii#." I asked Ryan, "Hey. Why is it that you laugh whenever I say shiiiii#?" He giggled (yes, he was giggling - couldn't help himself) "Maybe its because you look like such an idiot saying it." What a sweetie - cough, cough. So, you see, we find cuss words very useful and therapeutic at times. Ryan and The Daughter even found a study that said cussing can lessen the brain's ability to process pain. Hmmmmm, that makes up for all I said during labor and delivery!

    Take care Brian and keep finding ways to conquer no matter what. We are fighting alongside you.

    Love for you,
    Amy and The Patrick family

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  9. I am moved to comment on the stress that the communication of the insurer and Hospital services have put you through. My stomach was tightening as I read your account. And your account is hardly new. There are so many people like that in various offices of public service, that I wonder if there isn't a higher message that comes out of the anguish that they put their victims through? One can't really appreciate this situation unless a) one watches Monty Python, or b) has their own real life experience. Reading about it just doesn't quite get one there in your shoes.

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