Checking In Before Things Get Under Way…

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

Like a trained circus animal under Barnum & Bailey’s Big Tent, I jumped through every hoop of burning fire they put in my way…

 

Jump higher, they said…..”hold your breath…”

 

Under the Delusion of Control, they gave me rope…they put me behind the wheel and pretended that for awhile, I was actually driving the bus…

 

Ahhh……The Illusion of Control…

 

A lot of time spent….alot of money wasted….alot of bitter in-fighting amongst the dream team….and for what?

 

Chemo!

 

That’s what…

 

I’m so disheartened with this news…I feel betrayed by how I was misled…and right now, feel like the biggest fool in the world. 

 

They never had any other intention other than offering chemo…they only made me feel like I was calling some of the shots.

 

My doc was pissed that the other doc had ordered biopsies…and said he was “in charge” and driving the bus.  Of course, he later included me…

 

He rolled over on the spleen surgery and Oxy for now….if we don’t see response in six-months or less, he wants me to go that way…

 

Well, guess what?

 

In six-months, I just might take my hands off the wheel…I’m still not open to spleen removal just for Oxy for some permanent neuropathy….and then pathological progression  from there. 

 

Then, I’ll really feel cheated…

 

So, right now the plan is Folfiri….what’s new this time will be ZALTRAP. 

 

We’re subbing that for Avastin…

 

Going with the pump again….believe it does work better than Xeloda and with more manageable side effects at least in the way of it hurting my feet…leucovorin as well.

 

 

So many major, life changing decisions are staring me in the face as I prepare to leave this hostile work environment and enter the real-life arena of life and death once more. 

 

I won’t miss the two a-holes I have to sit up here and spend all of my cancer and non-cancer time with…

 

I’ve been wound tighter than ****’s hatband the past couple of years….and have made so many decisions for my dad’s stuff as well as ours….I’m just flat worn-out mentally and need some downtime, even in the worst of times.

 

I guess I’ll be getting to take a lot of naps now…

 

Even the onc’s assistant could see how stressed I was the other day…long story short is because in this world…if you need help…it’s hard to find anyone to take a solution end-to-end….

 

That’s the reader digest version of it…

 

I’m starting treatment back on Friday…..

 

My hopes are to work my way to some sort of surgical or palliative procedure…if for nothing else, than to help ease the pain in my lung.

 

Chemo is not going to work on this area, much less eradicate it….so we need some of radiation intervention as surgery appears to be out…perhaps forever there.

 

For the liver, I would hope for shrinkage, so that we can do some SBRT or TACE or something. 

 

Or this fight is not going to go on very long at all….

 

Geronimo – here we go!

 

 

-Craig

 

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Comments

  • John23
    John23 Member Posts: 2,122
    Uhmmmm

    Uhmmmm

     

    And you won’t give an inexpensive herbal remedy a chance for what reason?

     

    Just curious…..

     

    Best hopes for you!!!!!

     

    John

     

     

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    Will be thinking of you on

    Will be thinking of you on Friday.  Really hoping you breeze through it this time.  I am also pleased that your taking time off work. Hopefully you'll beable to relax and enjoy your free time.  

     

    Chels 

  • Lorikat
    Lorikat Member Posts: 681 Member
    Oh no.

    :(   

    Dont know what to say except :(

  • lauragb
    lauragb Member Posts: 370
    What you're going through
    What you're going through sucks, to put it bluntly. But I am hoping you are working your way into a procedure for knocking things back. Just know that many will be sending out good stuff to you on Friday.
  • LivinginNH
    LivinginNH Member Posts: 1,456
    Oh my, they really have put

    Oh my, they really have put you through the wringer my friend.  But knowing you like I do, I know that you will indeed, plow right through it.  :)

    Luv and big Texas hugs,

    Cyn

  • karguy
    karguy Member Posts: 1,020
    Glad

    Glad your taking time off of work that will help with the stress.Good luck on friday.

  • herdizziness
    herdizziness Member Posts: 3,624
    Craig

    Well it isn't what we all hoped for, but hopefully it will do it's job for your liver and your lung pain will cease I'm hoping (fingers crossed and all that), I can feel for disappointment my friend, but you can and will do this, get through it and keep going on.  I'm betting on surgery being in the future for you.

    I'm hoping this chemo isn't rough on you this time and that it's very doable, tell Big Billy he'll be needed on Friday.  All my thoughts towards this being okay for you will be headed your way on Friday and the ensuing days to come.

    You have my virtual shoulder to lean on anytime you need it my friend.

    Winter Marie

  • ron50
    ron50 Member Posts: 1,723
    G'day Craig
    They forgot the kryptonite. I've been a bit slack of late and haven't kept up to date as much as I should. I'm having a few dramas as well. Had some nerve conductivity test in my lower legs to have the neurologist tell me . yes you have severe neuropathy Your left leg shows no signal ,no I don't know what caused it and no I can't help, that'll be $600.00 thanks goodbye.
    Then I wore the heart monitor for 24 hrs. I have a few ventricular premature ectopic beats. Actually the monitor said I had 10,299 veb's also60 atrial ectopic beats plus one supraventricular tachycardia run. Whatever that all means, I see a heart specialist in a couple of weeks. My gp put forward a thought. I think all of that chemo has finally eroded your internal electrical system and you are shorting out everywhere. Ok. All I can do mate is wish you well ,hope you catch a break and perhaps we might have that drink on the other side.. All the best Ron.
  • Bluejuniata
    Bluejuniata Member Posts: 20
    Leaving my streesful,

    Leaving my streesful, dysfuntional work environment was the best move I ever made. Going to my 'quiet place' to heal, no matter the outcome...the important part was/is that I am taking the time for myself now. Letting go of the day to day anger that eats you up and is SO unimportant. Looking for the simple, joyful moments and really living in the moment which is all anyone has. Admist all the disappointment and BS my wish for you is that you can tap into your 'true self' and try to find peace, serentity and joy in moments throughout  your days...in between all the rest. Sounds pretty 'pollyanna' I know, but it's what I've got to offer because it works for me most days. 

  • janderson1964
    janderson1964 Member Posts: 2,215
    Craig, I think it is time to

    Craig, I think it is time to change your avatar back to the lion with what you are facing. Keep Big Billy close by your side as well. I am glad you are taking time off of work. Screw all that uneeded extra stress form people who cdon't care or understand.

    It's so unfortunate you had to go through all of that testing and time to end up on chemo. I am having a very hard time lately not questioning the medical system. It seems to be so easy for these doctors to order test after test that costs thousands of dollars to come to the same conclusion.

    I don't want to send too negative for the newbies but like you said it is all about keeping it real and it is something they should be aware of.

  • AnnLouise
    AnnLouise Member Posts: 276
    Craig....

    I will be thinking of you Friday. Remember you have all of us on your side, as you have been there for so many. Hope all goes well so you can do the treatment and procedures, you want. Keep us posted and know that you are  not alone. ~Ann.                  

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

    I want to wish you a very successful treatment with great relief of your symptoms and minimal side effect. Spend your time on yourself, your loved ones and your wonderful writing that gives us joy and I know it is your true passion.

    Take care till next time,

    Laz

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

    I am so sorry that you were not given more control or choices regarding treatment.  I know you hate the idea of doing chemo again.

    I wish that we here could offer you more than just our support, but hope that will help you as you start this next leg of the journey.

    If there is anything you need, you know there are those of us ready to do what we can.

    Hugs and love and prayers for success with minimal side effects,

    Marie who loves kitties

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    Craig, I think it is time to

    Craig, I think it is time to change your avatar back to the lion with what you are facing. Keep Big Billy close by your side as well. I am glad you are taking time off of work. Screw all that uneeded extra stress form people who cdon't care or understand.

    It's so unfortunate you had to go through all of that testing and time to end up on chemo. I am having a very hard time lately not questioning the medical system. It seems to be so easy for these doctors to order test after test that costs thousands of dollars to come to the same conclusion.

    I don't want to send too negative for the newbies but like you said it is all about keeping it real and it is something they should be aware of.

    Agreed, Jeff...

    Jeff

    I tried to work on Folfiri last time, but was just too much for me anymore.  And working on chemo, gives your employer so many options to go against you...and I don't have the regular sick and medical time to combat it, so I'd be missing quite a bit of work and not being paid for it....and leaving the door open for termination for any reasons they deemed necessary.

    And there goes your insurance, your std, and your ltd...

    I'm a survivor by nature....and I know how to fight...still do.

    And it's an open forum...and class is in session...new need to see it now rather than later....wish I had that perspective over the 9-years I've taken to get my degree in how it works. 

    This one really got me questioning too....I had always stood up for the medical community....stood up for my hospital....stood up for my NCI center...and stood up for all my doctors...at least my surgeons.

    So, yeah, I'm a little bit disillusioned with all of it...

    I guess the premise is to see if I have any pathological response to systemic....then we could think about a targeted approach.  I get that of course.....but with the pain in my lung, I'm not understanding why we can't address that side of the house with something now.  I understand surgery is off the table with liver and lungs.

    It just makes you feel....yeah, like that...

    Part of me just wants to hang it up now....I'm already in rough shape before the first bullet has been fired. 

    This fight feels different, Jeff....it's felt different from the very beginning...both emotionally and physically. 

    We're all seeing how we run - but we cannot hide. 

    In seeing all I've seen, it's hard to convince me now that something is really going to work for any length of time...and it's tough to keep sticking your finger back in the light socket too with chemo/rads...even surgery. 

    That's Enlightenment about the dark side of things associated with treatments and the hopes by which we hang on....

    I just wish I could have been left alone for awhile longer...

    I know that Cancer is not personal - it's just business....

    But, I'm really tired of climbing, Jeff....really tired of reaching for something that isn't there for me. 

    I suppose, initially I will give it a go and see what the path of response or progression will be....and then really begin making plans if things start to lean to one side. 

    I'd like to net another period of remission, so that I could finally use that time in my way for the final days....how many ever there were to be. 

    I won't go quietly though, that's for sure....and you know you'd never expect anything less from me. 

    Live for the both of us, Jeff! 

     

     

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Chelsea71 said:

    Will be thinking of you on

    Will be thinking of you on Friday.  Really hoping you breeze through it this time.  I am also pleased that your taking time off work. Hopefully you'll beable to relax and enjoy your free time.  

     

    Chels 

    Thank you, Chels:)

    It's so nice to see you despite all you're going through...

    I'm just so sorry about everything....if I could change the world, it would be for folks like you:)

    I'm glad to be getting a break out of the pressure cooker of life...it's been getting harder and harder to work everyday....the pain just keeps coming....I'm on 2 meds now and should have been home a long time before now....but you know why I was working...we've talked about this before.

    You just get scared....when someone holds the keys to your financial solvency, plain and simple.

    You're a sweetheart and thanks for stopping in....holding you in thought:)

    Hugs/Craig

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Thanks for your comments...

    Smile

    I got a reply back from the editor...I had sent her an email letting her know to contact me at home after today so I could review and approve the final layout for the magazine story. 

    I think somewhere along the line, I really must have gotten to this gal...

    She sent me something that touched me this morning....and it reaffirms in me the power of the written word...and how you can touch someone you don't even know through your words...and how we can move in concert with one another to make a difference in each other's lives - and the lives of others.   

    Here is what she said and I'm sure she wouldn't mind me sharing.  I had let her know that my cancer had come back once again and to forward all correspondence to my home email.

    From Jessica:"I'm sure your story will touch those in need. I know your positive attitude sure brightens my day. We're rooting for you (and Big Billy)!"

    Anyway, that lubricated my eyes this morning:)

     

    It's nice to be able to reach out and touch folks.....and I'm reminded of what I'll miss the most when I'm gone...and that's my biggest hurt for all that know me.

     

    -Craig

     
  • Maxiecat
    Maxiecat Member Posts: 544
    Ugh...Craig!  I thinking of

    Ugh...Craig!  I thinking of you....I hope this new plan gives you what you need to get to treatment for your liver And your lung pain.  You get right up there and drive that bus...run some doctors over in the process if you have to!  Try to take care of yourself with this new chemo regime.I I will be thinking of you on Friday.

    alex

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    John23 said:

    Uhmmmm

    Uhmmmm

     

    And you won’t give an inexpensive herbal remedy a chance for what reason?

     

    Just curious…..

     

    Best hopes for you!!!!!

     

    John

     

     

    John...

    I don't know...

    I watched Jenny go for it...she had wanted to try everything...and we know what happened.  And that wasn't exactly a reassuring endorsement of this product.

    Wish there were more cases to hear from. 

    Alot of times, when things come down to the nut cutting and somebody says WOOPS!.....as people, we tend to err on the side of the guy who wears the white coat....it's been instilled in us since we hit the atmosphere.

    I know for me, if I went to herbs and the Woops time came, somehow I wouldn't feel right.

    Of course, I wouldn't feel right in the WM world either....but I bagged 9-years out of it, which is way more than I should have. 

    I think I'm just getting to that stage of my education where I don't feel that anything is really going to work for me that will put me into any kind of meaningful remissive period. 

    TCM in conjunction with treatment might be viable...and I'll have to start looking at that.

    Thanks...

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Sundanceh said:

    Thanks for your comments...

    Smile

    I got a reply back from the editor...I had sent her an email letting her know to contact me at home after today so I could review and approve the final layout for the magazine story. 

    I think somewhere along the line, I really must have gotten to this gal...

    She sent me something that touched me this morning....and it reaffirms in me the power of the written word...and how you can touch someone you don't even know through your words...and how we can move in concert with one another to make a difference in each other's lives - and the lives of others.   

    Here is what she said and I'm sure she wouldn't mind me sharing.  I had let her know that my cancer had come back once again and to forward all correspondence to my home email.

    From Jessica:"I'm sure your story will touch those in need. I know your positive attitude sure brightens my day. We're rooting for you (and Big Billy)!"

    Anyway, that lubricated my eyes this morning:)

     

    It's nice to be able to reach out and touch folks.....and I'm reminded of what I'll miss the most when I'm gone...and that's my biggest hurt for all that know me.

     

    -Craig

     
    Glad to see the lion is

    Glad to see the lion is back!   What a nice comment from the editor.  Well Craig, you know that you have lots of people pulling from you.  Taking a leave so you can forget work stress is  a good idea.    I know chemo wasn't what you were hoping for, but maybe it'll get you to where you want to be.   I certainly hope so. 

    Hang in there and vent away here as often as you'd like.

  • BusterBrown
    BusterBrown Member Posts: 221
    Craig,
    As you know my cancer

    Craig,

    As you know my cancer returned in April of this year, I have mets in my liver and abdomen wall, and a spot in my pleural. I lost 25 pounds, was as tired as I've ever been, and was starting to think that this was the beginning of the end.  My Onc told me that chemo is my only option. Just what this seasoned veteran of 8.5 years wanted to hear,  the thought of going back on chemo made me crazy. I've already taken 50+ doses and look where its gotten me? Chemo is like shooting yourself in the foot every 2/3 weeks. You walk in the hospital feeling pretty good and you leave the hospital feeling like sh1t! It's just wrong!  It took me a week to come to grips with my reality, I committed to go as hard and long as I can with Folfox.  Today, after 5 doses, I've gained the weight back (no ketogenic diet here, I love food to much), I'm still a little tired, but nothing like I was three months ago, and I'm back at work full time.   Anyways, I'm certain, if it were not for the chemo, I might not be here today.  I understand that my results could change in a few months, but for now, I feel good and feel like I can do battle again.  I hope and pray that you get the similar results! Hang in there...

    Best regards,

    Buster...