Qwik Update

Sundanceh
Sundanceh Member Posts: 4,392 Member
edited August 2013 in Colorectal Cancer #1

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

«1

Comments

  • karguy
    karguy Member Posts: 1,020
    I'm sorry

    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
    Sundanceh Member Posts: 4,392 Member
    CEA did drop....

    98.0 down to <92.6

    always looking for any good thing...

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    ---

    .

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Craig

    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

  • ron50
    ron50 Member Posts: 1,723 Member
    Sundanceh 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.
  • Sonia32
    Sonia32 Member Posts: 1,071
    Bro activate your voice mail on your house ph!

    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

     

     

     

  • lp1964
    lp1964 Member Posts: 1,239 Member
    Dear Craig,

    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 

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Sonia32 said:

    Bro activate your voice mail on your house ph!

    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

     

     

     

    Now Sis

    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 ****'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

  • Maxiecat
    Maxiecat Member Posts: 544
    Your spirit, your fighting

    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
    mukamom Member Posts: 402
    Maxiecat said:

    Your spirit, your fighting

    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

    Oh, Craig

    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
    thxmiker Member Posts: 1,278
    We are sending our thoughts

    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
    PhillieG Member Posts: 4,866
    Gregg

    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
    Aud Member Posts: 479
    Oh Craig

    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.

     

  • MaryCarol5
    MaryCarol5 Member Posts: 102
    Sundanceh 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

  • johnnybegood
    johnnybegood Member Posts: 1,117
    Aud said:

    Oh Craig

    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.

     

    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

  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    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

    Craig .... sure hope you get

    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!!!  

  • jen2012
    jen2012 Member Posts: 1,607 Member
    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 :)

  • LindaK.
    LindaK. Member Posts: 506 Member
    Thanks

    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
    annalexandria Member Posts: 2,571
    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

  • hippiechicks
    hippiechicks Member Posts: 509
    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!