Tuesday, October 31, 2006

10.31.06 A Rather Rocky Month

Blog at long last: it's good enough for now, after the kind of the days the past two day have been. I need to pass on more info about the restaging, measurements, information for nerds, tales about taking the glyconutrients, and so much more. Here, for now, are just some of the main points. With a Franky Scale around 5 today.

Chemo today from 2 until almost 7 PM. Of course, we were early, which resulted in the longest lobby wait since I’ve had yet. Ten minutes early will get you into your table/room about 45 minutes late. Today’s drug of choice was a new one: oxaliplatin. New potential side-effects like freezing cold hands if you stick your hand in the fridge or freezer, touch a cold beverage, or numbness, tingling, and/or pain at general exposure to cold, then some something like acne — in how it looks — but just the aesthetic part. Like all the chemo drugs there’s a lot to it. Today, too, I got my Lance Armstrong shot in the arm, “darbo,” short for darbopoetin (sp?).

The drug for chemo yesterday was gemcitabine, one we should be quite familiar with since it’s the one drug that has been part of my chemo from day one, kind of the backbone drug. It was such a lovely and welcome experience yesterday evening to know that I had been thrust again into the hell of hot-cold sweats all night long. It’s far more effective than standard insomnia for keeping you really tired. Chemo yesterday was

Before that Sam was here spreading calm and joy, and I hope, enjoying himself to some degree. There will be more details on the weekend, but first, I know it seems like I’ve been lost in space because of the lack of internet connectivity and I wanted to fix that problem. It will take some time to filter through and then read emails from the past two weeks, but I fully intend to.

Markedly increased pain for the past few weeks has been the real story, the answer to those who ask and genuinely want to know “How are you doing?” Parts of many days have been spent simply down, lying on a side, sometimes in bed — though on the floor or a rug is just as good for me, a lot of hours lost in this. And a bit more mental energy than I’d like. Every time it’s a matter of recognizing it (easy), addressing it (bit harder), and then just waiting it out. It’s been to the point of upping the daily dosage, playing lots of catch-up, then I will be seeing a Pain Management Specialist at UW soon — I need to call tomorrow to try and push ahead through the current schedules on the books. All this was the core of my talk with Whiting today during my long, long chemotherapy “session.”

Overall I’ve been lost, help captive, living estranged not only from blogging but from email as well. (Sure, feel free to read into that all the metaphors of your choosing.) So there you have it and here I am. Our signal is strong and we should no longer have any outages. With the apartment nearly ready, it’s become much much more comfortable, and we’re almost there. Knowing where, of course, would always be nice.


spacely said...

I wish you could send some pain over here so I could share it with you. Think really hard and maybe you can do it!!!! I'll be sending some love and comfort soon. A week probably by the time I make it and the mail time. Can't wait to hear of the adventures of mr. sam and spot. Remember who loves you ......MEEEEEEE!!!!!!

Myage said...

Dudeman, I'm sorry the chemo sucks. I saw the pain. I'm pulling for you.

It was a great weekend. The calm and joy were flowing both ways, and I believe I got more out of it than you did. I quote you quite a lot now to people I know in order to pass on some of those pearls of wisdom.

Don't get crazy with the glycos, which I know is always tempting. I'll talk to you soon.

Slarry said...

Nov. 1, 2006

Hey Mr. Jones:
Welcome Back !!!! It was so good to hear your voice and read your
words again. ( sigh of relief ). You were missed--- Mr. Monkey Man.

The rocky month of October-- very fitting, though it was filled with
such great visitors. Nade, Spacely, DZD and family and brother
“spread the joy around” Sam. An amazing group of people.
Maybe someday I will understand why I enjoy and like your friends
more than my own ???? : )

Hate the fact of your having any type of increased episodes
of pain, chills, nausea and restless nights. I HATE CANCER !!!!

This new chemo-- oxaliplatin sounds putrid. The side effects.
You and Ms. K should be getting something in the mail soon
to assist in coping with some of the side effects.
Stepheni tried to keep them .... until she discovered they
were for you guys. She has sticky fingers ....

Spoke with Mr. Sam today-- he said it was like the perfect trip and enjoyed
visiting and talking with you so much. He enjoyed meeting Ms. K
as well---- someday soon I hope to meet her. Geeez.

Take care my brother. Love you so much.
I wonder if you will begin a new interest in cycling now that you have had
the Lance Armstrong shot in the arm ???

Halloween, what a ridiculous Holiday.
What I care about the most is timing--- It is November and you are definitely
still here, Mr. Jones. Living, teaching, coping and loving. Always.
Thanks and gratitude to the disenchanted princess as well.

Love you most.