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Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

It's been crazy how this round of chemo knocked the stuffing right out of me.  I knew it would be rough but had no idea I would be so incapacitated and sufferingf from so many ailments I lost count.  I thought getting started after all of this time that things would be not as difficult...especially later on in the cycle.

I've had unbelievable night sweats and day sweats....followed by the chills and occasional shakes.  I'm under a blanket most of the time in the hot Texas sun.

Right now, it feels like I'm physically dying...no joke....that's how it feels.

There's been zero quality in 14-days....

I've lost 15 lbs in 14 days on this cycle...not a good sign....even the PA freaked about that.  I had actually lost 10 more the prior six weeks to starting treatment, so I'm shrinking for sure. I've still got alot of reserve....I figure close to 30 more lbs I could lose....provided me break it down by at least 3 months or more.

My appetite has been long gone....can't eat much anymore for the past two months much.....this cycle has now gotten me down to not very much....a small bite or two here....and I drink as much water as I can stand....that is my only lifeline at at this point.

It does not bode well for the future and that's what the PA picked up on....the noticeable weight loss in two weeks time since starting treatment.

Kim and I hare having deeper talks than ever...she is allowing me to express my concerns and talk about end of life things etc. She is listening to me though scared for me to consider no more treatment.

This drug is rough for quite a few of us....it's apparently my krptonite now.  I know there are many things still to do.  I know all about the reductions, infusion lengths etc.  I've been telling many of you that stuff for many years:)

My onc better wise up or I'm on notice with the PA that we will be leaving to find someone with a human touch.  I don't want my feelings mitigated or my reports dismissed, clincial or not.  If I'm telling you about it, then you know damn well that what's happened from my view anyway.

I've had all the standard ride with this drug.  I began intestinal bleeding the past 3 days....I figured it to be the Zaltrap...but the PA said it sounded like my intestinal lining was sloughing up after breaking down from the chemo.  I had forgotten that.....that's what I think it is. But, it's like the dry heaves, you groan and strain and scream for a dropper full of intestinal lining....you pay trhe same pain as if you were crapping out a dump truck worth. 

The cramps and the gas and the pain are unbearable at times.....

I feel bad today (14) still but am up at least and wanted to talk to you a minute while I could....who knows what the next cycle will do to me.  I don't know the adjusted doses yet...we meet before chemo tomorrow for the plan.  And there are on notice for beginning to think outside the box and customizing some kind of treatment that I can live with for now.

I can't live like this....and won't.....

They can control the pain with Dilaudid and Fentanyl....so if I got off chemo, I'm sure I'd feel better soon and could then live out my days with some kind of decency and humanity.

It's not life here at all.....can't even get off the house with all of the associated mess....hard even for appts.

I don't know where we're going yet.....I still can't write like I want to.  Just too sick to put a nice post together.....but I know some are worried so I just wanted you to know what was going on. 

I finished up with Coping/Jessica and sent in the final approval and signed off.....

It is changed somewhat but not too dramatically.  It lacks my flair, LOL!  But it brings Big Billy to life.....the story is titled "The Legend of Big Billy"

Now, wouldn't you know that SOB would become a legend long before me:)  LOL!

Here's a story...haven't told you one in awhile....

The first night we got home from infusion...I felt so bad, I told Kim to drive me back down and I was going to have the pump removed....it was a premonitiion of things to come.  As always....another true story.

I'll try to hang in there.  I thought I had nothing left to teach anyone here.....but this leg of the journey has many thoughts I'd love to express...if I could just get feeling better to do so.  I still might be able to peel the paint off these walls if the drugs would let up.

I swear they are worse than the disease itself.......2 weeks ago, I felt okay enough.....2 weeks later, I feel dead to the world. 

Chemo sucks....and the first lesson I have for this next chapter is how being strong and able to do the things we've done before, may not come as easily the next time....and you just never know. 

My new epiphany is how now (at this late stage of the game) how the KNOWING can seemingly work more against you - than for you. 

And that's because you just know too much....and what it takes.....and the scars from before....which make you hesitant about the future.

Naievete is the land I wish I could reach back to about now.....there is something in its innocence that allows us to do the things then - that we cannot find the will or the energy to do anymore.

With all my love,

-Craig

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm sorry you are  doing so bad.It's too bad the pain pills don't work,if they did you could maybe sleep the pain off.I can only hope you get better,and keep praying for you.

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

98.0 down to <92.6

always looking for any good thing...

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

.

ron50's picture
ron50
Posts: 1266
Joined: Nov 2001

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.

KathiM's picture
KathiM
Posts: 7871
Joined: Aug 2005

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

MaryCarol5's picture
MaryCarol5
Posts: 95
Joined: May 2013

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

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

More words are coming...

Cool

Lovekitties's picture
Lovekitties
Posts: 2893
Joined: Jan 2010

Have we told you lately how much we love you?  We do for sure! 

Your taking your precious energy to think of us is what you are all about.  You want us to know things.

I sure hope that the docs can get that treatment adjusted so that you can manage it without it draining you so.

Prayers and love and hugs coming your way to help sustain you through this.

Marie who loves kitties

Sonia32's picture
Sonia32
Posts: 1064
Joined: Mar 2009

God damn it, you have freaked me out today. So much so I added your lovely wife to the talk about group on facebook.

I could not get you to join, but thanks to Marie I found out she was on FB, so if we can and she agrees to stay in the group we will support her. Because she will need it, so we can tell her what to do for you, or push you into getting it done bro because I know how stubborn you can get!

Why on earth is the PA of your oncologist giving advice? do you not have a specialist nurse etc??? you need to change oncs fast this is not good at all!

Maybe you can stop chemo until you get your strength back,  then go back on it, bro this is not good at all how you are.

 

Love you loads

You're annoying adopted sis in the uk

 

 

 

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

no voice mail on home phone for too many reasons....won't be activated. may be cancelled or moved to another service even.

kim might not join....she talks to her family through her fb account but has always wanted to steer clear of cancer which is why she does not post  here on csn.  she's got alot going on with work...and now I'm a handful with all the appts.....so if she doesn't join, she doesn't want to because she's got alot going on.  No pressure on her....everyone is strung tight as dick's hat band around here....

My PA is okay...I actually got to at least get my story on record with her instead of fighting my onc....she'll help me I think get my point over that we stay open minded or I'm leaving and/or quitting treatment so I can enjoy some time.

We'll see what the new plan is....and I'm takikng it day to day.

We agreed that the treatments going forward will not be getting better (at standard) than they were for the first one.  So, she gets it...and when I talk, people get it.

I hate feeling like this....makes you so angry because you hurt so bad.

I actually cried out to God last night....and actually cried for several minutes uncontrollably.  Dr. Standley told me that sometimes you have to "cry out" to Him.....so I did.  I begged for healing or at least stength to be the lion I need to be.....and not a down and out fighter.

I don't know His plan, but told Him I can't help people like this.....what is there to learn from me in this state?

Anyway, a mini-purging....lots of emotions bottled up.....

Anyway, think of you guys over there in fb land...I just don't like fb....and don't trust it...so I don't join.....nothing personal. And I can't keep up with too many things anymore anyway.

People always know where to find me.

Stop worrying now...I'll find someplace to pull up....just wish I wasn't facing chemo again tomorrow....so I wanted to talk today before I faded away from the next treatment....

hugs/me

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

I just had the same conversation with a friend of mine about that childish innocence and naïveté when we had no preconceptions, prejudgements about anything and we just absorbed everything the way it was. Well, we grew up my friend. We learned a lot, gathered a lot of information, memories, formed concepts that helped us to get by. But also we loved this. I know you love knowledge, you want to understand. But we got handed something that is very different than anything before. A disease with nearly 100% mortality in the long run.

We cannot go back and wipe the slate clean and start over, wishing we didn't know. We can't wipe out knowledge, memories, good or bad. 

You mentioned you lost a lot of weight in a very short time. you cannot lose that much real weight, it's got to be water loss. So watch dehydration. Just because you fill your stomach with water it doesn't mean that it gets into you blood vessels or into your cells. Replacing electrolytes is just as important, because they keep the water in your system. Otherwise you just pee it out and still left dehydrated. You may even have consider IV hydration on a regular basis.

I hope I didn't bore you with something that you already know.

im going through Folfox too and getting pink discharge from the butt. Probably dying cells of intestinal cells and hopefully mainly cancer cells.

sending a ton of love and support,

Laz 

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Your spirit, your fighting spirit shines through in your post.  Wether or not you think you are helping people...rest assured...you are.  You have shared so much of what you are going through...in such a real and personal way.  I hope they can get this chemo straightened out for you... You should not have to suffer like this.  I hope you can get the appetite thing under control...you need to keep up your strength.  Have you lightened your load a little... I remember you were talking about leaving work.

palex

mukamom's picture
mukamom
Posts: 357
Joined: Oct 2010

My heart aches for you and Kim.  It saddens me so to listen to your "dis-spirit" (I made that word up).  Remember Kerry S.  Additude, Additude, Additude.  Mind, Body, and Spirit. ROAR like the lion you are and make them listen. 

 

Pulling for you

 

Angela and Robert

thxmiker's picture
thxmiker
Posts: 1201
Joined: Oct 2010

We are sending our thoughts and prayers for you to find some strength.  We will throw in some good vibes also!

 

Best Always,  mike

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

I'm sorry to read that things aren't going well. You've been through the ringer for sure. Have you tried MaryJane for appetite enhancement at all or even to help you just feel better?

Thank you for finding the time to update us all...
Bob
:-)

Aud's picture
Aud
Posts: 476
Joined: Oct 2009

I am again so sorry you are having to go through this.  I hope and pray that things turn around for you and you are feeling better and gaining strength somehow. 

You are in my thoughts and prayers.

 

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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

smokeyjoe
Posts: 1428
Joined: Feb 2011

Craig .... sure hope you get this sorted out with your onc. before your next treatment ,   don't know how flexible or openminded he is to trying something similar to what Kathryn is doing ....  tweeking things, eliminitating some things so you are still getting benefit without the horrid side effects.    CEA drop is good a good sign already .... just have to find the right dose!!!  

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

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

jen2012
Posts: 1186
Joined: Aug 2012

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 :)

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

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 ass 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:)

 

LindaK.
Posts: 301
Joined: Apr 2013

for letting us know how you're doing, even if it is to share your pain and misery.  I'm so sorry you are going through so much, it's amazing what a body can do.  I hope they were able to make some adjustments to your chemo today (if you got it at all) to give you some relief.

Wishing you better days....

Linda

annalexandria's picture
annalexandria
Posts: 2182
Joined: Oct 2011

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

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

You just make me smile!

"ROAR!!!!"

hippiechicks
Posts: 302
Joined: Sep 2012

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!

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

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.

hippiechicks
Posts: 302
Joined: Sep 2012

Cool  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!!

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

I appreciate the love and support of this community!

marbleotis's picture
marbleotis
Posts: 475
Joined: Mar 2012

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!

Hooley's picture
Hooley
Posts: 149
Joined: Aug 2012

Hi 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 

traci43's picture
traci43
Posts: 418
Joined: Jul 2007

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

Chelsea71
Posts: 1168
Joined: Sep 2012

Hi Craig,

I'm really hoping this last treatment goes easier. I wish it didn't have to be so difficult for you. Make sure you eat! Please update us only once you feel up to it. Will be thinking about you.

Chels

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

i am so sorry that you are going thru such a horrible time. It amazes me how you could even post! Thank you for posting. You are always in my prayers but i will be praying extra hard for you.

hugs

judy

UncleBuddy
Posts: 521
Joined: Aug 2013

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

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

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

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

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

LivinginNH's picture
LivinginNH
Posts: 1269
Joined: Apr 2010

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

Deena11
Posts: 193
Joined: Nov 2012

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

 

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

I'm so sorry you're having such a tough time.  My heart goes out to you.  Is there anything I can do?  You have helped me so many times over the past few years - would love to give it back. 

toyfox's picture
toyfox
Posts: 146
Joined: Apr 2011

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.
Linda

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