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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.

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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...

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'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.

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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!

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

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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.

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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....

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

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

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

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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.

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

Char

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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

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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....

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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..
;)

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

Bill :)

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Hi there Fezo - get well soon. :)

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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...

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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.

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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!

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I like the CanadianBlood Donor saying "blood-it's in you to give" fabulous! same goes for marrow and .... organs you no longer need or can spare bits of...lol ...sign up if you think so. the life you save may be your own..

wi-fi - that's a whole nuther matter....
;)

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I joined the registry in 1993 - a year after I lost my beloved aunt/godmother to leukemia. You had to give a blood sample back then. I've never been called though. Been a blood donor since I was about 20 and, timely enough, just added organ donor to my newly issued federal ID! It's such a good feeling after you donate blood just knowing that someone somewhere is getting stronger because of you.

Good luck with everything, fezo.

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We continue to move forward. Three of my brothers match each other but not me. We're still waiting on results of the one other. If that doesn't work it's off to the donor bank.

The doc officially gave me the OK to declare myself disabled and put in for Social Security. I'll be retiring before the end of the year - maybe before Halloween. Came closer to 63 than I might have thought.

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The other brother didn't match either. We're in teh big donor pool now.

To make it bigger go to bethematch.org and get your self tested. The life you save could be mine!

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Hey there, I did join be the match a couple of years ago, and I got a letter in June, of this year saying to contact them right away, because it looked like I was a match for someone. They asked me some medical questions, and said if I didn’t hear back from them within 3 weeks, to just assume that they found another donor. I do have some type of arthritis in my knees, but I am pretty sure it is just from childhood injuries. I wish they would have checked my blood because I think it is pretty healthy. I checked out their website concerning the medical qualifications, and I think I pass. I don’t know who the person is that I could be the match for. I hope he or she is alright. I do want to donate if I can.

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There could be all sorts of reasons they didn't follow up with you. Could be a better match for that person or even just a closer one. You are still in their data bank. If you get a message that you match a 60 year old guy in NJ be ready.....

I'm officially retired with this as of Monday. Going to be a rough patch but once I can get Social Security I'll be OK. I do get a pension.

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Well, the word is they have three perfect matches for me. They'll figure out which is the best. They'll be putting me through a bunch of tests and we are looking at just after Christmas for the transplant. All prayers, positive thoughts and general good vibes are most welcome.

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terrific news! keep us posted when you can and best wishes for a successful transplant.

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OK, what happened to the February posts?

In case someone who wants to know missed it here was the basic post.....

Well, we have a date. March 19. They put me in the hospital and cut me up the first day. Oddly, no cutting for the transplant or anything. This is to put in a catheter they need. I assume it will be like when they put in my port - they knock you out and you wake up with the thing in there. Then they start chemo to knock out the old marrow right away. There goes my hair. If they want it for wig material they can have it. Otherwise I'll give the younger girls my ponytail and let the barber in there shave my head to avoid waiting that out.

Turns out I am a clinical trial of 52 patients. Not the first time I've been a guinea pig. They give me paperwork with this that lists about 8 ways this could kill me but that is stuff they have to say. That part ain't happening, folks.

My donor is identified only as a 57 year old American male. If he can't do it for some reason the backup is a guy from outside the US about the same age. The backup to the backup is a woman that I know nothing about because one of those first two will work. The way they treat this is how I'd want it. The donor and I can't know each other for a year. After that if we both want it then we can. Their reasoning, which I already had decided on independently for the same reason, is that after a year I'm out of the woods. Wouldn't want to go meet the guy and then have it go terribly wrong.

I'll change blood types! I'm AB+ but the donor (either guy) is O+. As the new marrow starts producing it will be O+. It will also have his DNA even though everything else will have my regular old DNA. Amazing.

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Hi Fezo,
I don't know what happened to those posts either. You, me, Char, DSR, all our recent posts on this thread just deleted for why? Also,suddenly some of my other posts and some of my recent PMs were deleted. I sent Char a couple of PMs about it, and she didn't do it, and she said that if it was the owner of corfid, that he would have let her or me know.
Don't know what happened. Maybe some hacker nutcase. Seems a little personal perhaps. Strange, anyway.
I changed my password and email, though I never told anyone my password.
I said some good special prayers for you last night. More on the way.
Patti

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I can't explain what the heck happened to them but I've contacted Florian about it..
hopefully it won't happen anymore..

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FYI - I officially have started a caring bridge site - http://www.caringbridge.org/visit/stevelasala

I had no idea about these folks until one was set up for Jesse Winchester during his cancer ordeal. Glad to see he's back up and running.

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Well, this is it, folks. I go in Sunday and start chemo with the actual transplant happening on the 28th. Here goes....

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Now reporting from the inside. I arrived at Sloan Kettering yesterday. Am set up comfortably as you can when in a room you cannot leave. Two guitars, a mandolin, iPods, computers, etc. I've got three lines feeding six bags going into me but am comfy and listening to stuff I haven't in years for starters. The Kingston Trio at the Hungry i. More than any single piece of vinyl that is the reason I play.

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thre you are! my goodness it sounds like you're all trussed up like a turkey at christmas..lol
nice that you can have your music/guitars and mandolin etc. would it have been easier for the docs/techs to just come to your place?
lol
keep us posted..healing hugs from toronto,
char
i have a friend in TOronto having his first chemo today for colon cancer...

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You are in great hands Fez! Sloan really knows after Transplant care so well!...They really know how best to control graft versus host reactions to get them most benefits with the last harm. God bless you and will keep you in my prayers - Bill

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Fezo, when it comes to endurance and stamina you are an example to us all.

Over the last two days I've gone back read every post on this amazing thread and what you are going through is beyond belief.

The support network you have here on this site has long tentacles and clearly is yet another means of proof just just how powerful music really is, and in this case the music of Gordon Lightfoot in particular.

Whether it be faith in a higher power or any other means to help get you through this please know that it be our wish to see you up and about and hitting on all cylinders once again asap.

RJ.

PS: I'm looking forward to the addition of your recordings to my collection.

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Thanks! I'm looking forward to creating new music once through this. I've still got loads of copies of the old CD for anyone that doesn't have it but it's getting time to be serious again after this.

Well, today is the day! They are separating out the cells as we speak and they'll go in me about four this afternoon and I'll be recovering for a year or so.

I've been updating the caringbridge site as I can.

I'll post this once and don't feel obligated as I treasure all the support I have here but if anyone wants to help out financially my family and friends have set up a fundraiser and the site has a donate button. My insurance is god but there's loads of other expenses. Anyway, the site is http://friendsofstevelasala.org/ Thanks for looking.

Man, I miss my kids! I still ahve the two ten year olds - not that I don't miss the older girls but..... Thanks goodness for Skype. I had never used it until a week ago.

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Cells are in! Ready to roll. Now we just have to build me a new system!

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Lost the hair today.

I'm at the bottom now but today may have been just a little bit better than yesterday. That's how it begins.

Someone had asked for teh direct donate like. Here it is https://www.paypal.com/us/cgi-bin/we...7139403713ca13

Many thanks for all the support.