Keep me in mind

Originally Posted by fezo

Hey! Just back from Florida. Nice get away and haven't had one of those in three years. Of course I hadn't been away because of my health and this time I go away and right away have a call from the doctor saying my white blood cell count is way low. I let that go but checked in today. They have now pushed off chemo for a week in hope of the white count correcting itself. We'll see what happens if it doesn't. if it does I just restart chemo.

Ah, the fez! The way the word fezo got invented was that when I was mmaybe 12 I tried to sneak a word by my then six year old brother when playing Scrabble for Juniors. The board has little pictures with words around it. One is of a fez. My brother had the right letters for that and played it. I had almost all vowels and no words to make so I threw an o at the end of fez and tried unsuccessfully to convince him it was a word. didn't work but teh word stuck. We've used it for everything - including a band name.

I was playing a few games of online scrabble a little while ago, and on one game...the first letters that came up in the tray were: NCFEZOT!!! lol My turn 1st so I knew "FEZO" wouldn't work lol!

[Peter Bro10]

Hey Fezo, haven't heard from you in a while. What's up? I hope all is well.

Enjoyed the CD. Thanks.

[fezo]

Hey! Here I am.

Just been a bit nuts of late. Last couple of days been nuts under two feet of snow. That doesn't happen much here but we've got it now. It'll melt by Christmas.

On the main health front (as opposed to my scads of chronic ailments) this chemo does the trick. Come New Years it will be 4 months since a transfusion. Never thought I'd see the day. It had been every two weeks! It's nuts on my schedule but does the trick.

More to follow...

Glad to know how well you're doing with the chemo! That's awesome!!

[Patti]

Yeah that is awesome. Good to hear.

We had been shoveling snow here for 3 days in a row. 24th, 25th and 26th! The 2nd day was some heavy stuff! Today, none. Nice break.

[Jesse Joe]

Really good to hear fezo !


We have almost no snow at all here. I miss having a great big snowstorm around Christmas. We will probably get them in March & April, when it's a bummer.

[fezo]

What? Patti gets a day of now snow? Must feel like August.....

We had a doozy of a storm a week ago. About two feet which we only get maybe once every five or more years. It stayed quite a while then the day after Christmas it poured rain all day. In the morning there was nothing but snow in the yard - better than a foot. In the evening it was all gone. The lawn should be good for a long time...

Am still quite holding my own. Maybe now I can start on things like getting the weight down and building some muscle...

[Patti]

'Tis the season to be cold. Hahaha...

Not too bad here. I don't mind the snow as long as it isn't too much too often. It's nice out no matter the season.

Building muscles? Me too. Not to the extreme, but doing ok.

[fezo]

Boy, I had to really hunt down this old topic - which is a VERY good thing!

Just thought I'd catch people up.

late last year they put a port in me - a little gizmo they can hook directly into so they don't have to torture my veins any more. my veins are pretty scarred up but now geting now worse.

Here's the much better part. I've been on a chemo program for a bit over a year. It's 7 days on 21 days off, takes only maybe 40 minutes a shot and hasn't made me nauseous or made any hair fall out that wasn't already falling out. The best part is (drumroll, please) I haven't had anyone else's blood in eleven months! If I make it to September 1 that will be a year!

My numbers would have your doctors putting you in the hospital if you had them but they are fine for someone with what I have and I haven't been in a hospital for nearly a year!

At one point or another I know I'll still have to hit the odd transfusion but it feels great not needing them right now. I should be good for a couple more decades!

[charlene]

wonderful news! keeping my fingers crossed for continued success and good health!
thanks for the update..

[Peter Bro10]

That's great to hear Fezo!
Just curious if you're still playing guitar and/or performing? Enjoyed your album a bunch!
As I learn to play (still very much a beginner) I find it very relaxing to grab my guitar and play/practice... I like to think of it as therapeutic.
Anyhow, you keep on gettin' better.

[fezo]

Not performing much but always playing.

I've got some sort of ligament issue with my left ring finger which tightens it up and is moderately painful at times but if I start playing it loosens up pretty quickly. I think that happened when a wave I was trying to ride (body surfing) decided I needed to go somewhere other than what i wanted and it drove fingers first into the sand below....

WOW...glad to know you are managing so well !!!

[formerlylavender]

I was wondering how you were doing. Great news...thanks for the update.

[Jesse Joe]

Really pleased to hear the good news fezo, always thinking of you !

[fezo]

I was happy to see I hadn't posted in here since August. Feeling reasonably well is a very good thing. I managed to break a year with no transfusions and stretched that to 14-1/2 months. OK - now the bad news - the streak ends Thursday and really should have ended last week. My numbers are hideous and I feel lousy.

That said, I am still at work (even as I type) and I think this is merely a bump in the road.

Continued positive vibes of all sorts are always welcomed.

[charlene]

Positive thoughts heading your way...let us know how things go on Thursday..

Char

hi Steve!

I hope you're feeling better by now since having your transfusion. Glad to know you had a good, longer streak before ending up feeling lousy again .

For sure I (and others who have medical challenges that go up and down) know all too well about the 'bumps'.

Also for sure.....I'm sending positive vibes your way!

Pam

[fezo]

Long time no see......

Well, a couple of things are on the front burner now that should more or less resolve these things.

First is that I'm now on an infusion medication to bring down my hideous iron levels. Transfusions add a lot of iron to your blood which is not good. Doesn't have anywhere to go so takes up in internal organs hindering their function. I have about 10X more than I should. So now every evening I set myself up with this syringe attached to a pump attaches into a needle that I get to put into myself. I then hang with that for 12 hours. I'm asleep most of that time and probably reading or watching baseball the rest but I could go out and do things. The pump in its case only makes me look a little like a suicide bomber.... If I wear cargo pants I can slip the pump in a pocket and unless you knew to look for the tubing you wouldn't notice. This is likely to go on for a couple of years.

Meanwhile, the big news is they are setting me up for a bone marrow transplant. It's the only real use of stem cells that's already in common use. They are testing my brothers for a match. I'll have more detail in a week. I'll be in the hospital at least 100 days so get ready to hear from me a lot.... Won't have the world's many distractions for a while. Overall recovery time is said to be about a year but at that point I'll have a whole new blood and immune system.

Stay tuned....

[charlene]

omigosh that's good news to hear- a marrow transplant!! here's hoping your brothers match and you get it done asap..update us as things transpire.
meantime stay away from airports if you're all wired up..

[BILLW]

Good luck fezo - keep us in the loop - at least we can be a distraction for you.

Bill

[Patti]

Hi there Fezo - get well soon.

[fezo]

Thanks, folks.

I'll be in Sloan Kettering. I've been telling people it was the only way I was ever going to get a place on the upper east side....

They'd better have wifi...

[jj]

All the very best and glad to hear there may be a bright light in the offing. I hope a brother matches or perhaps an unrelated match.

I only joined the registry in recent years and hope others do so "someday". Someday is Today
http://www.onematch.ca/

Give blood. Fill out your organ donor card.
You'll sleep well and bounce out of bed each day.
Well I'm still working on the latter. Lol

And most importantly, goodluck with the wifi!!! Take care.

[fezo]

Thanks. I encourage everyone who is not in the registry to get in there. It's only a cheek swab to be tested and now it is becoming common that it is only like donating blood to be a donor! In my case whoever the donor turns out to be they'll just hang out in a chair while they take blood, get the stem cells that they need from it and put the rest back in!

They've grabbed marrow from the bone on me a few times. Trust me, it's a great thing to spare people that experience.

Actually when they do the actual transplant on me it will be like getting a transfusion. Of course prior to that they kill my existing marrow which is apparently quite the lousy experience and, yeah, there's at least three months recover in the hospital but still...

For my Canadian friends follow jj's link. For my American friends try marrow.org For anyone else drop a line in here and I'll find out where to send you!