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Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

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 Dick’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

 

John23
Posts: 1832
Joined: Jan 2007

Uhmmmm

 

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

 

Just curious…..

 

Best hopes for you!!!!!

 

John

 

 

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

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...

Chelsea71
Posts: 1170
Joined: Sep 2012

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 

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

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

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

:(   

Dont know what to say except :(

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

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.                  

lauragb
Posts: 368
Joined: Aug 2011

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's picture
LivinginNH
Posts: 1287
Joined: Apr 2010

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's picture
karguy
Posts: 1024
Joined: Apr 2009

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

herdizziness's picture
herdizziness
Posts: 3395
Joined: Apr 2010

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's picture
ron50
Posts: 1279
Joined: Nov 2001

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's picture
Bluejuniata
Posts: 20
Joined: Nov 2012

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's picture
janderson1964
Posts: 1565
Joined: Oct 2011

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.

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

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! 

 

 

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

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's picture
Lovekitties
Posts: 2927
Joined: Jan 2010

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's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

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
 
jen2012
Posts: 1195
Joined: Aug 2012

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.

serenity101's picture
serenity101
Posts: 80
Joined: May 2013

I'm relatively new here, but her quote pretty much says what I was thinking. Good luck on Friday and beyond.

LindaK.
Posts: 312
Joined: Apr 2013

Craig, thank you again for sharing so much with us.  We all care about you and Jessice summed it all up in 3 simple sentences.  Thank you for reaching out to me, you have changed my outlook on life and cancer.  You have influenced and helped so many like me, for that I will be forever grateful.  I will be sending good thoughts to Texas tomorrow while you start your next treatment.  I'm sorry you've had to go through so much and wait so long and then to be disappointed in the treatment plan.  Since I'm always sarcastic, I can't help but say "Let's get this party started"  That's what my husband said right before his first chemo treatment.  Hoping you tolerate this treatment and are feeling better soon!

Love, Linda

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

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

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

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...

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

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...

pluckey's picture
pluckey
Posts: 470
Joined: Jul 2009

I've been away from the board for quite a while- but took a peek to see the old timers...

 

Damn,I am so sorry you ahve to go thru this cancer crap again.

OK Lion, roll up the sleeves and do what you do best - FIGHT

 

(hugs)

 

Peg

herdizziness's picture
herdizziness
Posts: 3395
Joined: Apr 2010

Glad to "see" you, nice pic!

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

Sorry about all that you're dealing with right now.. glad you're off work for some well deserved rest.

maglets's picture
maglets
Posts: 2403
Joined: Jun 2006

ahhhhhh Craig.....here i am dragging my sorry a-se back down from the north to find your news.  Breaks my heart my friend to hear you so down ..praying  I can identify......who knows what fight numero 4 will feel like.......just so so sorry you have to gird up again.....I agree with those who have said get out of work if you can.....toxic environment? who needs it?????

chemobeamosteamo.....here we go again.....sending you love......mags

tootsie1's picture
tootsie1
Posts: 5003
Joined: Feb 2008

Oh, Craig.

 

There have been many reasons for me to be off here for awhile, and I'm sorry I haven't been that much in tough. I HAVE chatted with Kim on facebook. Praying for you, both for peace of mind and for healing. I know all of this seems like a major setback for you! Praying for complete healing!

 

*hugs*

Gail

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

Craig - That just sucks!  Especially since you're in pain with the lung mets.  I hope that the FOLFIRI works for you again.  I'm considering going on it instead of XELIRI because I can tolerate a full dose, although the QOL is not as good.  I hope that you get some relief and quickly so that they will consider targeted treatments.  I'm glad you're taking off work for this, focus on the battle and take time with your family. 

I know we all try to stay positive and support each other, but I'm sitting her going ****, ****, ****.  Just not fair.  I know cancer, and life in general, is not fair, but ****!  Wishing you all the best as you start this latest battle.  You're in my thoughts, Traci

 

hippiechicks's picture
hippiechicks
Posts: 309
Joined: Sep 2012

Dear Craig....

I to have been away from the board for a bit fighting through treatments and such.  I am so sorry to hear you are going back into battle, however, I would like to share with you that duing my last treatment I shared a chemo pod with a fellow soldier who was "filled with tumors all over his lungs, liver and colon".  He is a much older than I .. probably by 40 years, but he is fighting and not giving up as we all are here, listening to his words ... "I am not ready to go anywhere", "I will not give up this fight", "Not now" ... where so inspiring to me.  He is also on my cocktail of Folfiri .. plus leucovorin ... His great news to me was ... all his tumors are GONE in his liver and lungs ... his story gave me chills. He was not even able to walk up his front stairs do to being unable to breath .. but now he can again and is walking and enjoying his life again.  

I have much hope for you .. I know how horrible it is to face recurrence ... but knowing you are not ready to give up and taking time now for YOU is the best thing in the world!!! 

I would like to share with you, I have begun acupuncture for the chemo side affects and I can tell you hands down it is working!! I am not sure your exact location, but there is a network of what is called community acupuncture which is MUCH cheaper (usually sliding scale) giving people such as ourselves more freedom to go as needed and affordable.  I also would like to share I have begun physical therapy to control the muscle and joint pains with much results as well.  I have also discovered through my nutritionalist that LEMONADE works for getting the fluids in .. it cuts through the icky mouth taste .. and my own invention which also works is an orange coolatta with a hint of vanilla bean (tastes like a creamsicle) and works wonders .. get one for every treatment!! Oh, and I do wear sunglasses do to lack of eyelashes and light sensitivity all of the time! Even indoors for the real bright lights. Cool

I wish you the best of luck for your upcoming treatments and hope you are able to find the inner peace and strength for your new battle.

Nana b's picture
Nana b
Posts: 2844
Joined: May 2009

Glad to hear that you are not working and taking time to focus on life   Take care and keep putting one foot in front of the  other.   We have to stick around fior that cancer cure.   Hugs. 

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