View Full Version : Keep me in mind
Hey! Ortley Beach is only maybe 25 miles from here....
podunklander
07-29-2009, 12:11 AM
Have a great time at the Bruce Hornsby concert tonight, Fezo.
I went to see Marshall Tucker last Saturday night. I actually went and got some autographs. That was the first time in my life I did that. Some brave girl dragged me over to them. Tomorrow night they will be at Joey Harrisons's Surf Club in Ortley Beach, New Jersey.
WOW...Patti :D must have been fun and glad you got to get some autographs!!! Congrats on your 1st time!!!
Hornsby was great - and right up front. Nice night.
He probably played two and a half hours but he's one that's capable of a 20 minute song.... It's no wonder he used to play with the Grateful Dead! Great show. Very good time. It's one in the AM and I'm heading to the hospital in the morning. Time to sleep.
podunklander
07-29-2009, 09:56 PM
Hornsby was great - and right up front. Nice night.
He probably played two and a half hours but he's one that's capable of a 20 minute song.... It's no wonder he used to play with the Grateful Dead! Great show. Very good time. It's one in the AM and I'm heading to the hospital in the morning. Time to sleep.
Oh kewl! Glad you got to go :biggrin:!! How did you make out with the transfusion today?
Did all right. I'm almost up to life-like....
Just an update....
Was at the doc's today and passed the hemoglobin test again. Not a great number but better than last week without someone else's blood for going on four weeks. This is progress.
The folks over at the infusion lab must think I've either moved or died on them. Neither is so.
charlene
08-18-2009, 07:28 PM
Just an update....
Was at the doc's today and passed the hemoglobin test again. Not a great number but better than last week without someone else's blood for going on four weeks. This is progress.
The folks over at the infusion lab must think I've either moved or died on them. Neither is so.
YAY! that's good news on all counts!
Pam was supposed to have some back tests done this week for an emerg.surgery but I see she has deleted her post about it..
Patti
08-18-2009, 09:41 PM
Good update, fezo.
progressomundo.
Peter Bro10
08-20-2009, 10:31 PM
Just an update....
Was at the doc's today and passed the hemoglobin test again. Not a great number but better than last week without someone else's blood for going on four weeks. This is progress.
The folks over at the infusion lab must think I've either moved or died on them. Neither is so.
That's good news... and we'll take all the good news we can get!!!!
--- I'll keep praying for you and your family, Fezo...
Long time no post..... Well, I had a tidbit in geosteve's topic but....
Anyway, here we go. Things continue to be taking a turn for the better but next Tuesday is my first surgery ever. They'll be putting that catheter in me. Goes right into a vein above the heart. Pre-admit tests tomorrow.
Basically should be a piece of cake but I'll feel better about it after it's over. They would have to do this sooner or later since my veins have had it.
Forget the Novocaine - I'm going straight for the knock me out.. Lie down, get comfy, wake up and it's done. I only discovered the wonders of general anesthesia a few years ago and am now a major fan....
Patti
09-29-2009, 10:27 AM
We're thinking about you Steve. Hope all goes well and you recover quickly.
And I'm back. Sore as all get out but otherwise fine.
Doc says no going to work for a week.
It's nap time but I'll be back in before long....
podunklander
09-29-2009, 09:02 PM
And I'm back. Sore as all get out but otherwise fine.
Doc says no going to work for a week.
It's nap time but I'll be back in before long....
glad you're fine! Rest up on your week off!!!!
Thanks.
Oh, my aching self! Now one problem is the procedure which is just under the right side collarbone. Ta add to it they seem to have missed a vein in my chemo yesterday which is OK from an effectiveness standpoint because the medication works whether it's in a vein or not but when it's not right in the vein things swell up an hurt (which is why they do it in the vein) so my right elbow is also swollen and hurts. Then, to go for the trifecta they must have nicked something putting the catheter for the procedure in my right hand and the back of that hurts like the dickens.
Of course if I already had the port neither of those latter two events would have happened...
So it will take a few days for my right side to be back to OK but I can live with that.
OK, how cool is this? It's been long enough since I posted in here that I got bumped off the first page! All right!
That port they put in does the job. It IS pretty annoying to tell you the truth and there is a bump on my right side where it is but it does the job and the incision is healing nicely.
It has now been six weeks (yes! six weeks!) since my last blood transfusion. I do a lot of chemo but other than the back and forth to get that it's not a huge deal.
I could get used to this.
Jesse Joe
10-16-2009, 09:05 AM
Great to hear fezo, you hang in there my good man. :)
podunklander
10-16-2009, 09:24 PM
OK, how cool is this? It's been long enough since I posted in here that I got bumped off the first page! All right!
That port they put in does the job. It IS pretty annoying to tell you the truth and there is a bump on my right side where it is but it does the job and the incision is healing nicely.
It has now been six weeks (yes! six weeks!) since my last blood transfusion. I do a lot of chemo but other than the back and forth to get that it's not a huge deal.
I could get used to this.
Are you getting a lot of side effects from the chemo? Does the port hurt?
Well 6 weeks! Hope you are able to go even longer :)
Myself, a little improvement and my doc told me to hang in there. He had told me 3-4 months at the end of July (I think?). I'm able to feel hunger pangs again so I'm eating more regularly. Well I did get a chance to talk about it with a biology prof from Brown U after a lecture (about the brain, memory and learning) and he explained the negative feedback-cortisol issue and how that has affected my memory and the hunger thing, etc. I still don't get it :rolleyes: ...he was talking too fast :eek:!
Patti
11-03-2009, 11:17 PM
Fezo,
Have you heard of these hats? I have seen them, but I didn't know what they were called.
Just found out.
http://en.wikipedia.org/wiki/Fez_(hat)
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.
podunklander
11-10-2009, 08:45 PM
Welcome back! Where in FL? Hope your blood count improves and you're feeling ok.
Patti
11-11-2009, 12:05 AM
I hope you had a nice vacation, and, yeah, what she said. 'Wherefore were thou?' They had some unseasonably warm weather in Florida I heard on the weather channel. Now they are getting cooled down.
They had scrabble for juniors when you were 12? I didn't know that. ..... Fez. I used to like playing scrabble at my Grandparents when I was around that age.
So they also copied you guys for the seventies show, ? (kidding). I hadn't heard that name before. When that show first came on tv, I wasn't watching it. A 'seventies' friend told me I reminded him of a girl on the show, so recently had to watch some reruns of it. Last time I saw it, about two weeks ago, Fezo was extremely funny.
I was a trend setter. What can I tell you? :p
We were down in Kissimmee. The younger kids hadn't done Disney yet so I had a walletectomy... I bought tickets that will still give them two more visits so some day I'll do that again.
Would like to get back to Tallahassee. Spent a year there in grad school and liked it a lot. Still have a friend or two up there. Actually has hills - unheard of in Florida.
Patti
11-13-2009, 11:15 PM
In Kissimmee? That's not far from where my bf lives. You had a walletectomy? Wow, I hope it wasn't too painful. I'm sure Carrie and Claire had fun. Are they in 2nd grade?
Your bf is near Kissimmee? That's a bit of a commute!
The empty wallet is all right. Well worth it for the girls' reaction. They are in third grade! The youngest third graders in the class but they are doing fine.
They missed a day of school because we came home on Monday. What I hadn't counted on was they were out for the week before we left with the flu. Heck, on Carrie's last day on the medication she threw up in the rental car! Oy! We managed to make it as good as new - or as good as slightly used...
podunklander
11-18-2009, 07:53 PM
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
12-17-2009, 06:11 PM
Hey Fezo, haven't heard from you in a while. What's up? I hope all is well.
Enjoyed the CD. Thanks.
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...
podunklander
12-22-2009, 03:35 PM
Glad to know how well you're doing with the chemo! That's awesome!!
Patti
12-27-2009, 08:09 PM
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
12-27-2009, 08:48 PM
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.
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
12-28-2009, 10:41 PM
'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.
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
08-07-2010, 03:17 PM
wonderful news! keeping my fingers crossed for continued success and good health!
thanks for the update..
Peter Bro10
08-07-2010, 04:17 PM
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.
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....
podunklander
08-08-2010, 11:56 AM
WOW...glad to know you are managing so well :)!!!
formerlylavender
08-08-2010, 01:35 PM
I was wondering how you were doing. Great news...thanks for the update.
Jesse Joe
08-08-2010, 06:17 PM
Really pleased to hear the good news fezo, always thinking of you ! :)
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
11-17-2010, 08:37 AM
Positive thoughts heading your way...let us know how things go on Thursday..
Char
podunklander
11-21-2010, 01:26 PM
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
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
08-01-2011, 11:10 AM
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
08-01-2011, 01:58 PM
Good luck fezo - keep us in the loop - at least we can be a distraction for you.
Bill :)
Patti
08-01-2011, 05:46 PM
Hi there Fezo - get well soon. :)
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...
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.
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!
charlene
08-03-2011, 08:47 PM
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.
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....
;)
formerlylavender
08-04-2011, 12:57 PM
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.
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.
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.
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!
Patti
10-01-2011, 06:14 PM
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.
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.
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.
charlene
11-29-2011, 01:05 PM
terrific news! keep us posted when you can and best wishes for a successful transplant.
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.
Patti
02-22-2012, 02:51 AM
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
charlene
02-22-2012, 08:26 AM
I can't explain what the heck happened to them but I've contacted Florian about it..
hopefully it won't happen anymore..
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.
Well, this is it, folks. I go in Sunday and start chemo with the actual transplant happening on the 28th. Here goes....
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.
charlene
03-19-2012, 12:20 PM
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...
talbot10
03-24-2012, 10:27 AM
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.
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
lighthead2toe
03-25-2012, 11:27 AM
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.
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.
Cells are in! Ready to roll. Now we just have to build me a new system!
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/webscr?cmd=_flow&SESSION=t1LhQ1FKm0WRkzmXQC9nIHhSF141d3Gkw32Duld3rA cjhGgThtxHqSSEJIC&dispatch=5885d80a13c0db1f8e263663d3faee8dcbcd55a50 598f04d927139403713ca13
Many thanks for all the support.
charlene
04-01-2012, 08:16 PM
It's just hair..when it comes back in there's liable to be a surprise! I know someone whose straight light brown hair came in with the most wonderful waves and curls and a deep brunette colour..he was 12 and is now 44 with 4 boys and a fulltime job as an anaesthesiologist. 32 years ago he told his docs at sick kids in toronto that he'd be a doctor when he grew up..and it's just what he did! of course with 4 boys there's a lot of gray in his hair now...lol
We're all thinking about you and sending healing thoughts and prayers your way...stay strong and positive..
talbot10
04-02-2012, 01:02 AM
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/webscr?cmd=_flow&SESSION=t1LhQ1FKm0WRkzmXQC9nIHhSF141d3Gkw32Duld3rA cjhGgThtxHqSSEJIC&dispatch=5885d80a13c0db1f8e263663d3faee8dcbcd55a50 598f04d927139403713ca13
Many thanks for all the support.
Hi Fez,
You are in a great hospital but you are right. Learn all you can about the side effects of bone marrow transplant and be very focused on both liver and Lungs. Make sure your doctors very shortly after the transplant give you regular lung pulmonary function tests (PFT). If you do have issues you want to get it early and get treated. That said, always keep in mind that bone marrow transplants can and does cure blood diseases. Keep the faith my friend. Please join this group if you have not yet. It is light in the darkeness and there are many people that can help you. - Bill
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Well, I am now a month post-transplant and getting better every day. That couple of weeks after they do the chemo are hideous but it improves greatly after that.
What I had was a bone marrow stem cell with t cell depletion transplant. They gave me 7 million stem cells from the donor but nne of his t cells. The downside of this is it up to a year or even longer to build up a full set of t cells which run the immune system. The upside is it eliminates graft vs. host issues. I'm a clinical trial so this is new even for Sloan. I'm always that way medically....
Patti
05-04-2012, 01:51 PM
Thanks for the new update, Fezo. Glad you're feeling better!
I wonder if your donor is a Lightfoot fan.
Now that's a good question! In a year maybe I can ask him.
Well, I'm a day short of two months post-transplant but here we go.....
I'm doing great! I feel fabulous and look pretty good considering my hair isn't back yet.... The doctor has to keep reminding me that I'm not as well as I feel. I have to build a whole new immune system - as well as a new GI system. The chemo just takes everything out of you but it slowly comes back. The immune system will take a year to get back to normal which results in wacky diet and having to be nuts about avoiding infection but I feel good, I'm playing up a storm (having little else to do) and my inflammatory issues and fibromyalgia are gone because those were autoimmune issues and I don't have that immune system anymore!
Things are looking up!
charlene
05-27-2012, 09:07 PM
omigosh you sound wonderful! I am so happy that things are turning out so well for you. It's so amazing that your ailments prior to transfusion are gone..just like that...ain't science/medicine fabulous?
keep on truckin and let us know how things are...
Keeping on keeping on.
Going home for a long weekend tomorrow and back to NYC on Sunday late.
Less than a month I get to go home to stay and continue to recover for another 9 months or so....
Get to watch the kids play softball tomorrow night. Last day of school. One of them officially pulled all A's for the year - something she set out to do. The other one had all A's and one B - always social studies. I don't think she likes that one....
Oh, I have been remiss in keeping you posted.
Right after they sent me home (July11) I started to develop and awful headache. It turns out my toxoplasmosis, which generally affects the retina (which is why I have a blind eye) andfor which I am now generally on a medication to keep it from recurring, came back. I had to be off the preventative medication for a bit and it grabbed its opportunity. This time it settled in my brain, causing a load of pain and swelling of the brain that came close to killing me. BAck to the hospital in isolation for the two longest weeks of my life.
The good news is we are almost doen with the treatment and I'll go back on the preventative and they are optimistic about the future. And I'm back home.
Still heave months to go on teh blood front but things are doing what they are supposed to do.
niffer
09-03-2012, 09:59 AM
It has been such an incredibly long haul for you. I wish you nothing but the best from here on :)
charlene
09-03-2012, 11:10 AM
Being home will make a big difference - what a time you've had.
Take care and keep us posted..
BILLW
09-05-2012, 08:24 PM
Hang in there man - we're all thinking of you...
Peace be with you,
Bill :)
Well, this has been a long time coming, but here we go...
When we last left our hero he'd barely escaped the second hospital trip...
Well, the news is I'm back on the right medication to keep the toxoplasmosis at bay. For way more information than you need to know about this try http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/?utm_source=FB1013_03
Meanwhile on the blood front news is generally good but one insanely frustrating exception. All your usual measures are goo - red cells, white cells, hemoglobin, platelets. The problem is my t cells and b cells. They are lagging way behind and these are what really runs the immune system. T cells detect things that shouldn't be there and somehow communicate this to the b cells which create the proper antigen. My b cells are low but getting there. My t cells are awful.
The result of all this is that 2-1/2 years down the road I'm still considered disabled (In January of 16 I'll go from disabled to Social Security but that's just a technicality. I'm out of the work force and bound to stay this way). I have a bunch of restrictions of which I follow most. Can't swim or walk in the woods. I'm supposed to have all meat cooked well but that's a terrible thing to do to beef.
All that said, I feel fine other than being bored silly. Never realized how much social activity went on at work. Out of about a dozen patients who were my circle of friends while recovering at Hope Lodge NYC for four months there are only three still standing. I'm close with the one and keep in touch with the other. I suspect I'll live to be an old Steve.
All of this I owe to a guy named Carl in Kiel, WI who got himself in the bone marrow data base and happened to be one of only 3 perfect matches in the world-wide data base. Have met him a couple of times and we stay in touch.
For any of you under 60 (leaves me out but they don't want mine anyway) go to marrow.org and they will send you a test kit - just a q tip to do a cheek swab with and send it back in the provided return box. The odds are 300-1 you'll never get called but if you do you can save a life. That's what Carl, who had been a complete stranger, did for me. I know there are more than 3 people with a 10 for 10 HLA (what they check for match compatibility) out there. They just aren't in the data bank.
And if called, they take stem cells NOT actual marrow!
There's more but that should be plenty for now.
Hey, just an update. I'm still not quite to the goal of being 100% back but am rounding third and heading for home.
I'll know a little more in a week but I'm betting on around Christmas.
The only thing driving me nuts now is this is the fourth summer with not being allowed in the water. I live 5 miles from the ocean and the water is in the upper 70s. Were it not for the sharks and Portuguese Mans of Wars hanging out (which comes with the unusually warm water) I'd take my chances and not tell doc. But if the head to airlift me with a shark on my leg I don't think I could face doc....
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