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Tedd? Craig? Phil?

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Just wondering how you all are doing.

I think of you guys often, and hope that there are plenty of bright moments in each day.

I'm sure I'm not the only one here doing that...we miss you!

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Anyone else I've missed??

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

I second your motion AA

m

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

So, all in favor, say AYE!

:)

Iced out down here in TX and couldn't get to my chemo treatment today....was just starting back up again today....low tonight will be 15-degrees:)

Oxy would have been fun on such a cold day:(

I'm hanging in there, Ann.....they just pulled my wound vac a couple of days ago...wound is mostly sealed and we just do a wet-to-dry dressing change until it fills in....not too bad.  I'm down 55 lbs and have gone down 6-7 WAIST SIZES since then....hubba hubba:)  Looking good.

I"m learng to live with cancer pain...much like yourself, I find myself in the world of pain meds I never wanted.....but without them, I'd be screaming, because the pain is so horrendous sometimes.....having cancer in the pleura of the lung really does hurt.....onc concurred.

I think of you often and the type of situations and feelings we share and such...I've missed all of you very much....pain and meds have kept me mostly muted...."who'd have thunk it?" LOL!

I think I'm going to try for a post shortly before I have to do chemo again.....I'd like to talk about living with cancer pain....this is a relative topic and one I've not touched on in the past, so it would be fresh reading.

Take care, my Annie....and thanks for keeping me on a short leash:)

Love/Craig

wolfen's picture
wolfen
Posts: 1321
Joined: Apr 2009

Good to hear from you, my friend. Hope our 3 other friends will respond, also.

Can't even comprehend the horrible pain you must be in. I'm just so sorry. I think your idea of a "pain post" is a good one. You know how much sharing info here helps everyone.

I really understand your remark about never wanting to get on the pain meds. I am the same way about anxiety meds. Have always thought I could just "tough it out". Finally decided, I just couldn't do it anymore. Just so many happenings overwhelming me, so I bit the proverbial bullet...............  Meds help a little, but at least, I am "trendy" now.

Luv Ya,

"Mama" Wolfen

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

 

Ahhh!! There you are!!! :)   It's been too long since I've seen that handsome lion!  :)  Wish you weren't in such pain my friend, and that I could help you in some way...

Hugs to you and Kim (((())))

Cyn

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Please do post if you can, Craig.  You know we like your lengthy pieces, but we are happy to just get a paragraph now and then too.

I'm so sorry about the pain.  It's just grueling to live with it on a daily basis, isn't it?  And what I'm dealing with is nothing compared to what you are going through.  Pain is the unwanted companion who just. won't. shut. up.  It's hard to hear anything else when there is that constant, unrelenting chatter.

But I hope you can hear our voices still, telling you that we love and miss you!

(and we want pics, Mr. Skinny Minny!)

Chelsea71
Posts: 1170
Joined: Sep 2012

Nice to hear from you, Craig.  Have been wondering and worrying about you.  You're tone sounds good though.  Looking forward to a lengthy, inspirational post one of these days.  Thanks for the update.  

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

it's good to see you again, been missing you.  I'm so sorry about the pain, but I'm glad your wound is healing.

luv,

Winter Marie

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

When I saw your post I went over and checked Phil's blog.  He had an update that he had his surgery on 12/3, doctor said it was difficult, but successful. 

Here is wishing you the best Phil and a speedy recovery!

Tina

janderson1964
Posts: 2215
Joined: Oct 2011

What kind of surgery did phil have. I wasn't aware of that.

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Oh I forgot there are two Phil's on the site.  I was referring to Phil in Michigan, Tigers fan. 

Tina

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Overall I'm doing well but large family Christmas party and 2 hr drive today reminded me I'm still recovering. Feeling some pain right now. And a little depressed that I couldn't fully participate in the party. I ended up hiding away for a couple hours (fell asleep) and when I came down I found I missed the kids opening their gifts. 

But really I shouldn't complain. I'm doing really well.

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Being a veteren of holiday surgeries, I know how easy it is to get worn out trying to participate in the holidays.  I'm impressed that you were able to do as much as you did with your surgery only a few weeks ago...you are tough!

Thanks for checking in~AA

jen2012
Posts: 1607
Joined: Aug 2012

Good to see you Craig! Sorry you are having so much pain. My hubby too :( ...it sucks. I hope things turn for the better very soon. We miss you!

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I just came off a lovely round of diarrhea and dehydration.  Got my second hydration this week, was supposed to have chemo this week but because of dehydration and blood work (messed up due to dehydrated) it is delayed until next week.  That way I get chemo the week I fly to Ohio for my daughter's graduation, so a bit upset over that.

i had been given the wrong pills by the pharmacy, in other words pills the oncologist DID NOT prescribe, diarrhea set in, I lost 12 pounds last week (still can't find them as of today they are still missing, LOL). Had to buy new pants to wear today, down from a size 10 to an 8 in a week.

Lesson learned: Do NOT assume the pharmacy double checks as they should, check on the internet for yourself.  If it had not been for Marie "LovesKitties", who looked up the drug when I was complaining on Facebook about my reaction to it, setting the course for me and the pharmacy and the doctor to discover the doctor prescribed the right pills, the pharmacy dispensed the wrong pills, I would have been a lot worse for the wear.  Thank you ever so much Marie!! (I swear I think that wonderful lady must be my guardian angel, as a matter of fact I think she is that for several of us) So everyone double check any new prescriptions.

i never have been dehydrated before or had so much diarrhea, this was my first and hopefully last.

Love at you all,

Winter Marie

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Craig it is a lonely forum without you.  So so sorry you are having to endure more pain but glad the wound is healing.  And Winter Marie....gosh what a round of trouble you have had.  Marie Kitties is a genius......what a girl....she is an internet angel......hoping you feel better soon Winter Marie......yikes skinnieminnies everywhereSmile

mags

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

REALLY IMPORTANT

Always check the label of the bottle my pharmacy includes a description of the pill.  The description includes a shape, color, and both front/back imprint information.  if no description on label...try this AARP Site:  pill-identifier

IF THE PILLS DO NOT MATCH EXACTLY...DO NOT TAKE WITHOUT TALKING TO PHARMACIST AND/OR YOUR DOCTOR.

I do this at the counter before leaving the pharmacy.  Not always appreciated, but, as you have found, a mistake can be really bad.  

Lastly, IMHO mistakes like this should be reported.

Glad you are back on track,

Art

abrub's picture
abrub
Posts: 2098
Joined: Mar 2010

I've used Epocrates (the free version) for years - on my Palm Pilot, and now on my Smart Phone.  It is great for looking up info on meds.  You can also put in the description of your pills, and it will tell you what they are (including lots of generic variants).  I've seen enough pharmacy errors that I double-check everything I get.  (I loved getting eardrops once, with strict instructions and labeled to use in eyes only.  Fortunately, I don't obey blindly or I would have been forever blinded!)

Epocrates has also been useful for me when with the dr.  My surgeon didn't know one of the meds I've used, and when I brought it up on Epocrates, he was fine with prescribing it.  We must be our own advocates!   

Alice

UncleBuddy
Posts: 1019
Joined: Aug 2013

Dispensing the wrong prescription needs to be reported. https://www.ismp.org/orderforms/reporterrortoismp.asp I would also report it to the store. Call the main office.

You don't want to see this happen again and possibly kill someone. I wish you the best!

Lin

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

I have never checked one single prescription....just blindly trust they are doing their job....mags

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

That's very scary...

abrub's picture
abrub
Posts: 2098
Joined: Mar 2010

They messed up my chemo once - giving me the wrong amount of drugs (basing the dose on a person who weighed 60% more than me.)  The intake nurse wrote down my temp (97.6) as my weight in KG, and my first round of Folfox was based on that error.  Once we realized what had happened, I got the specific amounts of each drug I should properly receive, and double-checked all of my chemo bags after that.

You can't trust anyone with your life.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I had never been prescribed lomotil before so had no idea what the generic name or the pill looked like, so the pill did match the prescription it wasn't a matter of putting the pill in the wrong bottle but a completely different prescription then what was prescribed.  My husband questioned the pharmacist's assistant, who supposedly looked up the prescription, wrote it down and told him yes this is what the doctor prescribed, so since he had questioned and I had just had chemo, we didn't question any further.  I thought the never ending diarrhea was the worst side effect I had suffered was from the chemo, not the wrong prescription.  Marie looked it up and said that was not a generic for lomotil but an entirely different prescription, which led to the pharmacy mistake. I quit taking the prescription and diarrhea went away, my husband has asked me at some point during this while I was sitting on the throne if I was okay, I told him no, I was just waiting for my intestines to fall out.

So my suggestion is, if you get GENERIC medication, make sure to look it up so that you can be sure it's the generic of what was actually prescribed. and not something else entirely.

Winter Marie

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I really hope you report that to the pharmacy!  That's actually dangerous!

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Yes we did, they took back the wrong pills ($190.00 for 30 pills) refunded our money and gave us the right prescription for free. And then called every day for 5 days straight apologizing.

Winter Marie

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Obvioulsy I've been absent from here for a while. Mostly due to politics and partly just needed a break. Thanks for thinking of me. I think of all of you and the journey we are on.

I had to have my 6th RFA last Tuesday, Dec 3rd, and it went well. BUT when I had radiation back in April of this year the radiation did some damage to my right lung. I don't recall the exact name that they gave the condition but it caused some inflammation in my lung and because of that I have reduced lung function. I noticed over the summer months. It's gotten better over time but I doubt that I'll ever regain it all. Not to mention that I've had 3 lung wedge resections as well as the 6 ablations, a plumonary emboli (blood clot) in Sept, as well as who knows how many rounds of chemo (400?) over the close to 10 years I've been in the game.

After Tuesday's ablation the Dr who did this procedure called me and asked how I felt. I wasn't breathing as well as prior to the procedure and I was getting winded easily. He suggestesd I get an x-ray to rule out a collasped lung so I did that on Thursday. Well that turned into an all day event where they also did a CT scan. The good news is that it ruled out any lung issues other than wear and tear on it.

I'm scheduled to go back on chemo (Erbitux and Irrinotecan) this week until they take me off of it. I'm not looking forward to it since I've been on a break since April of this year but I had a very nice break and this is what I need to do. It will be interesting if the side effects are any less since I've done about 7 years of that combo. 

One thing that was interesting was how many of the doctors that I just saw when I was in there were very impressed with my resume. You never konw what you'll get or how you will react to treatments...

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I didn't realize you had been at it for so long.  I hope the chemo isn't too hard on you.  I wish they could come up with something that could kick cancer's butt without kicking ours in the process.

And I'll bet those docs were impressed with your resume.  If they knew how much you manage to get done while keeping up your cancer-related skills, they'd be even more impressed!

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

AA - Thanks for posting this string. It's so good to see the responses and learning what's happening with everyone.

PhilleG... 10 years. Dude, you're my idol.  Thanks for sharing and keep up the battle. UdaMan!  I've been on that Erbitux + Irenotecan combo for a couple months, and it took my CEA from 55 down to 25.  Happy for that.    You mentioned that you stayed away from CSN because of Politcs... can you or do you mind expanding on that?  I don't get on here as much as before, as my wife tells me... "it brings you down".  I get so sad to see the continuous bad news. It feels like the same stuff every six months and it makes me so made that so many poeple are in this battle.  So, within your 10 years... you've been stage IV since the beginning, right?  Keep up the battle.  and thanks for being a good example for the rest of us to know that it IS possible to make it past five years!

hope everyone is doing well.

joe

 

Cathleen Mary
Posts: 827
Joined: May 2011

 

WOW!  These are the wisdom figures. I bow to all of your courage, perseverance, and hope.

Hugs,

CM

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

It had to do with local elections and how the town I live in consists of 4 villages and 2 cultures. Our town board does everything the 1 community who keeps them in office wants at the expense of the remaining 3 communities.

What's fair is fair and what's unfair is unfair. There's a very powerful bloc voting group who dictates much of what happens in New York State. A new political party was formed in my town that consisted of a Democrat, a Republican, and an Independent to try to unite the citizens and get some representation on our town board. Unfortunately, we fell about 700 votes short. We doubled the numbers of voters who usually vote in elections yet over 5000 registered voters did not feel that their future was important enough. It didn't help that the Board of Elections (BOE) didn't supply nearly enough ballots to the 3 communities (55% of registered voters - over 3000 ballots had to be hand written and then counted) while the 1 community got ballots amounting to 103% of the registered voters.

WTF????

I came on board with them back in March or April and did all of the website work as well as much of the design of flyers and political signs. It was very rewarding in many ways but the voter apathy part pissses me off. In many ways I understand the frustration that people feel with politicians but on a local level your vote really does matter and we don't deal with any National issues like guns, abortion, gay rights, who is President or any of that. It's more about seeing that everyone follows the zoning rules, pays their taxes, doesn't get reduced rates on road paving or snow plowing in exchange for paying a councilman's house off that was in foreclosure (yes, it actually happened on the 1 day the councilman was "Acting Supervisor") and what most people would feel are normal things that taxpayers pay.

Unfortunately, it's not normal up here. It took the BOE until early December to certify the results. We are now looking into annexing into another town before we are swallowed up tax-wise by the other community. Only in America Laughing 

(links removed by greta, CSN administrator)

 

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Dude, I hate to be the one to break it to you, but that's some wonky math they got going there...

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Vote often... Buses were coming up from Brooklyn all day too. They're basically untouchable and they're not shy about it.

LindaK.
Posts: 490
Joined: Apr 2013

Wow, this is amazing.  I had heard about this happening in school districts at a conference I went to in Albany in November and see it is happening to town and village government.  This is quite disturbing.  The median age of the town is 13.2?  That will fill up the schools and virtually make them religious schools funded by NYS.  40% of the residents get food stamps?  Wow, they sure know how to live off "the man"  I can sense your frustration and commend you for trying to stand up for what is right.  Keep up the fight!

Linda

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

They do have their own schools but what's becoming a very big issue is caring for special needs children. Proportionally the community has a much higher rate of special needs children (another story). They do school their own children at a cost of $125,000 per child. The cost of educating a special needs child outside of their community in public school is $42,000 per child. Now that more of the residents are moving into areas covered by the public education system, the taxpayers will now have to foot the bill for each special needs child.

There's another issue going on where the ACLU is suing that community to get access to records for the segregated park they recently built but the community is ignoring it. A commonly used tactic. And, if that's not enough, they are actively working to tap into the large water pipeline even though they do not have the proper permits. If I didn't live up here and someone told me about this stuff I wouldn't believe it.

If you really want to blow your mind Google East Ramapo School District...

LindaK.
Posts: 490
Joined: Apr 2013

I just read some of the NY Magazine article from April, 2013.  I don't understand why they are doing this.  Is it some sort of pay-back to American schools?  I can't believe NYSUT (the NYS teachers union) isn't screaming about this to all NYS taxpayers and Gov. Cuomo.  What they are doing to the students left in East Ramapo is criminal.  What happened to all the NYS standards forced on so many other schools?  I would think these districts would be on top of the lists of failing schools.  Closing schools and then selling the buildings to their own is also not right.  I guess I'm pretty naive about all this.  It sounds so crazy.  How can you stand it?

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

[Content removed by site administrator] 

 

jen2012
Posts: 1607
Joined: Aug 2012

Damn...I hate cancer. This is just not fair.

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks Ann.

 I have no words that I haven't already said a hundred times.  

bailee2012
Posts: 61
Joined: Jul 2012

This breaks my heart.  I really don't know how much more of this I can bare.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

that we can't post personal info about other members.  My mistake!  For those who would like to know how Tedd is doing, you can check Facebook or his Caringbridge site.

And this may affect our ability to post obituaries, I'm not sure.  I've asked the mod who contacted me about that, so will see what she says.

Personally, I am going to make sure my husband has my log-in info for CSN, so if something happens to me, he can come here and let you all know.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

which admin was this?  Seriously, this ticks me off!

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Don't be upset!  I'm pretty sure it's in the TOS that we not use members' real names, even if that member has used his or her name on the forum (as Tedd did).  It was my mistake.

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