Qwik Update
Comments
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Jen:)jen2012 said:Craig - i'm so sorry you are
Craig - i'm so sorry you are in such pain and having such a tough time. I can only hope things turn around soon. Had they been monitoring your CEA? Was it climbing or do they just check once a year.
I can understand why your wife doesn't want to join the FB group (I don't FB either - don't like it!) or here - she's smart. Sometimes I wonder why I come here - it can be really overwhelming and so hard to really come to care about people and watch them suffering. I guess if you can come for information and not get emotionally involved it would be okay, but that is hard to do.
You know you have so many people praying for you and pulling for you - I hope that helps you get through, even a little bit. Don't worry about worrying us - just take care of you and check in when you are up to it. I think we all get nervous when you are quiet, so maybe a quick hi every few days would be nice
In the chemo chair and thinking about what you said...
My life would certainly be a little more empty had I not met you here...you and I kicked **** with Coping...and now we got my 1st article published coming up....and a beautiful chapter in this board's history. Believe me that's worth the price of admission....I took to you and Chels in the recent crop right away.
I wish I did not have to put any of you through this....we were sailing along, but I knew there was trouble....and still it caught me and others by surprise in its timing.
But, I get what you mean...it's hard for me too....
And we do check CEA on regular labs....went down from 98.0 to 92.6 first round...
WE are in the September/October 2013 issue...coming soon...more when I know.
Hugs:)
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Hey Hip...hippiechicks said:Thinking of you today on your
Thinking of you today on your treatment .. hoping some adjustments have been made to make things easier for you.
It is great to hear those numbers have come down on CEA so quick!! Seems like this could be a very very positive step forward!!
I am on Folfiri ... I will tell you .. I have discovered acupuncture for many of these issues really does work!!! At least for me it has. I try to get it just before my treatments ... and I swear it is has really made a huge difference with nausea, fluid build up, heat/cold changes, muscle and bone aches and that foggy head feeling .. I have much more energy after treatments than I did before as well. Do not get me wrong ... the issues are still there .. just less and manageable.
I also found drinking lemonade works!!! I also get hydration along with my infusion .. also a huge help. Also, they cut down both Irinitican and 5FU to a more manageable dose. I am sure being able to drink a good amount of fluid is also helping to push out the toxins. I start drinking it on the way home from the hospital and do not stop for 4 days.
For the vision changes and light sesitivity (which I thought was just from oxy, but apparently not) I wear sunglasses all the time!!!
I really hope you have a bettter time of things soon!!! It is not fair to have to suffer with treatments. They are supposed to help us live a more comfortable longer life .. not ruin what we have left.
I hope to be of some help to you .. certainly not imposing hopefully.
My best to you .. hope your voice was heard with your onc. today!
Not imposing at all...whe we stop listening - we stop learning. Thanks for sharing your tips:)
I drank a few sips of lemonade and it was so good...the other day mouth was burnt up and I could not tolerate....last night, it went down good, just a few sips. Nice change from H2O.
The onc "heard" me alright. This dose cut to 50% for the "teak"...all else the same. It's catching me but infusion is winding down...we'll see how this goes.
Thank you.
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My Annie:)annalexandria said:Craig, you are still a lion, no matter what.
Cancer may be able to attack your body, but it can never damage your spirit. Breaking down and crying is actually a sign of strength, imo...it shows that you are open to the honest emotions that go along with this battle, and releasing them into the universe, where they can dissipate a bit. It's not weak to do that. In fact, I think it's a necessary part of getting through this crap.
I agree with you that the "knowing" makes it even harder. Facing my 2nd chemo, after the first failed, was horrible, knowing what was likely coming. And that's nothing compared to what you've been through. The fact that you have been able to push yourself into this new round of treatment is mind-boggling and says everything about your courage.
You're in my heart as you go through this, Craig. If we could take on your burden and share it amongst all your friends, it would be lightened to the point of non-existence (and you have so many friends here that our individual burdens would be almost nothing as well). If only we could do that...
Lots o' love from your librarian friend~AA
You just make me smile!
"ROAR!!!!"
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Hey Gal (J)johnnybegood said:hey guy
im really sorry that things are not really going the way YOU would have wanted it to go but i guess we just have to roll with the punches that we so dearly hate.im facing my own demons looks like i will be going down the irritatecan road MAYBE in the next few months.dont know yet just cant wrap my head around that one just yet.so listen up you are the one who has turned me to the Dr. stanley channel let me tell you he is spot on ,tell it like it is,i love his words about Him.so wish mama would tune in to him too.just keep praying to Him for strength and He will give it too you,He has given it to me so many times and i know you have gotten to that place where all things are possible thru Him.just put one foot in front of the other and we will be walking right beside you(((HUGS)))...Godbless...johnnybegood
I'm so glad you are watching Dr. Stanley...the man is brilliant....wish I could teach like he does...when he was younger, he was a different type of speaker, but very, very powerful. Now he is sage and full of wisdom and he teaches more. His delivery and tone are different but he is still very effective. He has taugh me many things and is responsible for the recent changes in my life this year.
The other night when I finally "cried out", I asked how I could help people if I don't survive this?
Seeing real life changes through your story that you just told me is a living testimony of how change does occur. It pleases me no end:)
That's real life changes put into action right there.
You know how fond I am of you and "Mama." Deeper than that of course:)
I'm going to try and hang on, Sis....thank you both for letting me get to know you better...and of course our outlaw, Big Billy:)
Love/Craig
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Thanks MC!MaryCarol5 said:You have moved into first
You have moved into first place in my daily (actually mulit daily) thoughts and prayers. I hope and pray that you get maximum results from your treatment and that this suffering will lead you to many more years to wow us all with your words.
Love and hugs to you and your wife!
MC
More words are coming...
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SOOOO glad you wereSundanceh said:Hey Hip...
Not imposing at all...whe we stop listening - we stop learning. Thanks for sharing your tips:)
I drank a few sips of lemonade and it was so good...the other day mouth was burnt up and I could not tolerate....last night, it went down good, just a few sips. Nice change from H2O.
The onc "heard" me alright. This dose cut to 50% for the "teak"...all else the same. It's catching me but infusion is winding down...we'll see how this goes.
Thank you.
SOOOO glad you were heard!!! Best to you these next few days ... my mouth sores last several days also ... gross is what I call them!! Usually accompanied my a lovely sore throat and swollen tongue. My treatment for that is Italian Ice and a wonderful invention I have discovered ... orange coolatta with a bit of vanilla bean .. it tastes just like a creamsicle and kicks that nansty taste ... also start that on infusion day! I also feel like I deserve it ... LOL! Sending lots of support to you!!
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Hugs!
I wish this wasn't so hard on you and hope and pray the adjusted dosage can be effective while increasing your quality of life. You are so right, it gets harder with each recurrance. You think you know how you're going to react but each time things are different. It is amazing how quickly I can forget some of the effects.
Praying for you, Traci
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Sorry for the hard timesSundanceh said:Thanks!!!
I appreciate the love and support of this community!
Craig,
I am so sorry you are having a bad time. The adjustment on the chemo seemed better for you.
I agree with all the talk about hydration. What is also good is 1/2 Tea / 1/2 lemonade. Tastes good and you actually want to drink it. Don't drink it too cold.
I send my prayers for you daily. This suffering is terrible. Continue to work with your Onc on chemo adjustments until they get it right.
love and prayers!
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Wow
I am so sorry that you are having such a difficult time. I am in awe of everyone's strength and determination on this site. It helps me, as well as my brother, to see others who are able to keep on going with all the roadblocks they face. I will keep you and all the others on this site in my prayers.
Lin
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strengthUncleBuddy said:Wow
I am so sorry that you are having such a difficult time. I am in awe of everyone's strength and determination on this site. It helps me, as well as my brother, to see others who are able to keep on going with all the roadblocks they face. I will keep you and all the others on this site in my prayers.
Lin
Craig, you were one of the first people who offered me support in 2009. I admire your words, honesty and strength. Breaks my heart to hear how this chemo is bringing you down. You are one of the most amazing people i have ever known. Your words are so full of feeling and so real. Did you ever get that book published? I may not post much, but please now that you are always in my thoughts. Hugs
Petrina
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strengthUncleBuddy said:Wow
I am so sorry that you are having such a difficult time. I am in awe of everyone's strength and determination on this site. It helps me, as well as my brother, to see others who are able to keep on going with all the roadblocks they face. I will keep you and all the others on this site in my prayers.
Lin
Craig, you were one of the first people who offered me support in 2009. I admire your words, honesty and strength. Breaks my heart to hear how this chemo is bringing you down. You are one of the most amazing people i have ever known. Your words are so full of feeling and so real. Did you ever get that book published? I may not post much, but please now that you are always in my thoughts. Hugs
Petrina
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Hey buddy, How are you doing?
Hey buddy, How are you doing? I just wanted to let you know that you and Kim are in my thoughts. I'm looking forward to reading your article in Coping - just remember to save me a copy!
Stay strong dear.
Luv ya,
Cyn
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Craig
I was sad to read that you are feeling sick and "down in the dumps". Hope you manage to stop losing weight. I lost a lot of weight very quickly and the Onc and nurses forced me to drink 4 Ensure Plus bottles a day to stop losing. It worked. Lost fifty pounds very quickly but stopped losing when I drank that stuff. I know you know about all that stuff. I really wish I could "beam" strength to you. You are such an inspiration to eveyone and you have so many people praying for you. I wish you strength and hope.
I send you a warm hug.
Deena
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Hi craigSundanceh said:Thanks!!!
I appreciate the love and support of this community!
remember u are neverHi craig
remember u are never alone. Tkyou for sharing. U are such a witness to many! "Well done good and faithful servant". Praying Gods peace for u above all. He holds u in the palm of His hand. So glad CEA is dropping! Luv and sunshine to you
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I could not agree more....ron50 said:When cliches become real
G'day mate,
You are really living in that zone between the rock and the hard place. When I am talking to doctors I try to get across to them that I perceive my life as being lived on a tightrope. What ever drug they wish to put me on the first question I ask ' Is it likely to knock me off the rope?' . My kidney specialist told me it would be ok to take an anti-inflammatory every second day to ease the pain of the arthritis and spondylititis. After a week my ankles were like tree trunks and I had to take twice the number of diuretics just so I would not drown in my sleep. Docs don't seem to realise how hard it is to get back on that rope. It has taken a few months to get there. My gp wants me to take an anti-depressant. I had to draw his attention to the drugs interactions and side effects.. Don't take it if you have kidney disease it causes oedema. We discussed it and I refused to take it. He thought it would be ok and I didn't , so I am not going there.
After nine years plus for you and nearly sixteen for me , we know what our bodies are doing and what they can and cannot take. Doctors have a hard time getting their heads around that. After a certain time the no pain no gain idea just does not work. I hope you can guide your doctors to delivering a treatment that can give you some hope without hurting. All the best . Ron.Darling Craig.....and Ron....
It's the details (side effects) that sneak up and grab you....sigh.....
I am sitting here, sending all sorts of comfort your way, Craig! I wish I had that magic wand that made Ron's tightrope into a 10-lane superhighway!!!
Hugs to you both (and, if it's ok....I'll keep one for myself!)
Hugs, Kathi
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Just letting you know
I have not posted much in the last year....always lurking though.
You have been in my thoughts a lot. You have been so kind to
so many people. It just breaks my heart that the cancer has come
back on you and so many others. Just letting you know I care and
hope the best for you.
Linda0
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