There hasn't been much to say. I have been going through that low-spot of nadir, but not nearly as bad as in the past. Instead of sore cheeks I have a sore tongue, and couldn't even eat a banana last week. It is much resolved now. Of course, with the renewed steroids, I haven't crapped in 3 days and getting a little antsy. Pounding the fiber and liquids, and the basketball in my gut will be used at the Celtics victory game on Tuesday.
The chowderheads (Mike B, Jack L) have been getting together for games and cooking great meals - last night was lasagna with ahi-ahi, garlic bread and super fresh salad from Sue's garden. Steaks and rice with salad the game before. As long as we eat well, the Celtics WIN!
Downside of course is with no pooping and lots of eating, I am really sore and can barely move. I am very unmotivated to do anything these days, sleeping very poorly, 4-5 hours thanks to steroids. Dana is improving a little, and looking forward to the end of school.
When I go in to see the doctor today, I will ask him how much travelling I can take on. I am guessing small 3-4 day trips are feasible, as the week I get the chemo isn't bad, but then nadir the following week sucks a little. I will get chemo today and tomorrow. This morning young John and I will do some housecleaning, hah, if he wakes before noon. Really busy days.
It has become very hazy in my head, to see what I am fighting for any more. I never actually feel any better, just degrees of lousy. I bring the dog to the park and scan the hills for all the beauty I can find, and listen to the kids playing, and somehow it is enough for another day. It's as though I had this giant plastic cup when I started in life, and each time I drank from it the rim wore down a little, and so now it is only a small cup but only needs a little joy to sustain me.
HAPPY BIRTHDAY PAT! Man, to be 39 again.
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Hi John and Dana, I do hope you get some GOOD feeling days and that they come more and more.
ReplyDeleteYou have a great way with words John and I can picture what you write. You and Dana and the boys are in my thoughts and I look forward to reading a post from you stating that you're feeling good...and hope you have many more years of them afterwards... Terri Messina
THANKS, JOHN and sorry I can't seem to keep up to the rest of you with this age thing...but nice of you not to mind hosting a little surprise party for me here on your blog, appreciate it.
ReplyDeleteI had to pass Early Bird's house to get to my celebration at the beach, but with this polar bear thing going and all, the protocol is find a virtual setting based in california where we can leave messages. so far it's working, we get along pretty good.
as my grandmother used to say about me and you, we get along but not together.
that probably was and still is partly because I sound like a broken record, but why don't you take it easy once in a while. anybody, even without leukemia, would feel a little unmotivated on no sleep while carrying the ball for the celtics. good you are at least eating to win, but while you're doing the limbo here, couldn't you tone down expectations to match energy? I mean where you gotta get to?
I guess you must get bored. too bad we didn't all have the brains of your dog to just enjoy the park.
thanks again and please, help yourself to the leftover cake and fireballs.
pat
“As long as we eat well, the Celtics WIN! “ Well hell, let the Ho-Spice B-B-Qin begin.
ReplyDeleteGlad to see you feel well enough to give us an update John.
Pat makes a good point about taking it a little easy on yourself. It reminds of something someone said to me a few years ago. It so happened that my regular Saturday morning golf team ended up always getting behind a group of retirees, whom obviously were in no hurry to play fast. One of my golfing partners was always impatient with slow play. It really used to make him crazy if someone was taking too long over a shot or walked too slowly. So we’re behind the retirees one Saturday and they were playing even slower than usual. My impatient partner was showing signs of getting angry and I asked him if he was okay. He said, “You know, these guys in front of us have nowhere to go and all day to get there.” As Pat said, . . .where ya gotta get to?
Take it easy John and keep a goin.
Mac
Earl you seeing this--me and Mac, how we agree, keep each other covered, got each other's back?
ReplyDeletethe reason for all this agreement and harmony should be obvious to you, but in case you need me to point out the obvious:
WE HAVE NEVER MET!!!!
I think the problem is I am not exercising at all, and so the intake is not getting churned. I just stepped off the scale at 158, so that's not good. Where is the food going?
ReplyDeleteI have to find the energy to walk or limp around, so I have been cutting myself too much slack. Would that any of this was easy, but then, Vinnie graduated, so the economy will at least come back.
John The food / calories /protein my be poorly absorbed now due the chemo, and the bmt itself. You also have to consider cancer cachexia which is a rapid loss of mostly lean body mass via gluconeogenisis breakdown of protein/amino acids for production of glucose. I went from 190 lbs to 130lbs two years ago I now weigh a whopping 148. It is difficult to remedy if you check the literature on cancer cachexia. Megace only increases body fat so that is not a helpful solution. I would walk the dogs as much as you can, walk up small hills occasionally, break out the dumbells use low reps for strength. Get out of the house as much as allowed. bill
ReplyDeletethe big thing is, vinny graduated without getting kicked out of graduation. and he made it through awards banquet and got his FFA shovel award, outstanding member 2010 without any incidents. he only got kicked out of prom.
ReplyDeletewas throwing ice cubes out the dunes club window to watch people look up and see where they came from.
but one guy looked up and threw a quarter at his head hard enough to cut a gash in his eyebrow. so he practiced his impulsivity control things, don't throw the glass in my hand, don't jump out the window like a freaking ninja and kick the guy...until the guy started saying it was only a quarter and he threw the glass.
it's nice to see them all grown up, isn't it?
plus to feel so prepared. you know you talked to your kid about drugs, alcohol, unprotected sex in public places.
who knew to say order your soda with no ice. it's always something.
anyway...
all his nice aunts, those polar bears raised by Mary and Crackers, gave him cards made out to Vinny Mancini, Glass I mean Class of 2010.
so John, all those times I ask you, how did your mother do it...?...it wasn't rhetorical question.
by the time the economy fully rebounds he will be at college and hopefully I won't know what is going on.
hope all this blog talk makes you go for a walk so you won't have to hear any more
>>>>>>>mamaP<<<<<<<<<
Hello John,
ReplyDeleteYou have truly been an inspiration to me, my mother was recently diagnosed with T-Cell A.L.L., about 3 weeks ago and she just has returned home from the hospital after her first round of chemotherapy. I wanted some insight and advice on your outlook of your life throughout your journey in beating leukemia. You've beaten it twice and you can DEFINITELY do it again. You have set a great example. I can leave you my email if possible, I am doing everything I can to help her beat this. It would be great to connect with a survivor.
Thank you for your inspiration and god bless,
Sushma