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How Cancer Can Change On You In a Week's Time

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Well, I've slipped off the slippery slope, folks:(

The operation has just about worn out and run it's course apparently...the pain has ramped up exponentially this past week.  It's hard to breathe, hard to talk, hard to walk, hard to sit, hard to lay down and hard to sleep.  For 13 months I've dealt with 24 hour a day pain non-stop mind bending at times pain.  That may be hard for you to understand.  You really have to live it to have an appreciation for it.  I've got zero quality of life at this point.  Without this pain my cancer fight would be measurably better.  I've simply got too much to battle.  It's a world war inside my body as I'm fighting multiple fronts and enemies.

Things got so bad Friday that I could barely make the drive to the hospital.  After we got there, the pain was so bad that I left the waiting room and went in the back and asked a nurse for a room so that I could lay down and wait to be called for treatment.  She was so nice she found me a room, offered me a blanket and then went down and told Infusion where I was...pretty cool.  They are so nice to me.

Trial is still ongoing but it's just reporting now....my operation here still looks to be 2 months away...by that time I'll be crippled and unable to go to appts.

Anyway, Friday we told my nurse I was in pain and fortunately he contacted my NP, who consulted with my regular onc.  They are going to talk to a thoracic surgeon to see if they can offer anything to help me.  The talk is of fusing a couple of bones together perhaps.  If we're candidates I would find more out with the consult at that time.

Dear friends, there are times when I wish "I could turn out the lights.". And yet I fight on...I must get out of this pain and I'm fighting as hard as I ever have.

How many more surgeries?

I don't know...I've had 13 surgeries under my belt already.  My body has take 10 years of this and I'm getting tired.  Cancer really got me this time.  But, still here giving it Hell...

So, if I drop off it's pain related, will try to check in when I can

Things may move quick; they could tell I was in alot of pain...the NP was stroking my hand she could see I was barely dialed in.  I barely made treatment the other day.  Other than appts I'm currently mostly bedridden; stuck in a room and in a bed, yet grateful They are there. 

I'll keep trying (HARD).

Love to you all...

-Craig

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

Keep fighting on my friend, still 'giving it hell' after everything you've been through is flat out courageous. I'm sending you good energy, you're a hero.

Easyflip/Richard

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Ready to receive good energy.....

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Oh my friend.  I am so very sorry you are suffering so much.   my heart is heavy knowing you are in pain.  You remain in my prayers and my thoughts Craig. 

Aloha,

Kathleen

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Thinking of you as well:)

Craig

UncleBuddy
Posts: 1019
Joined: Aug 2013

my heart breaks for you. I am so sorry that you are in so much pain. I hope there is more they can do for you. Please, don't worry about us here. Take care of yourself. Hugs!

Lin

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

I can feel your pain in your post. Praying as I type that you get relief and things get better. :, (

Love you bro

 

Lovekitties's picture
Lovekitties
Posts: 3332
Joined: Jan 2010

No one who knows you would doubt that you are giving your all to overcome these issues.

Is there any way that they can put you in the hospital and give you more pain meds to allow you more comfort until they can do more for long term pain control?

You are constantly in our thoughts and prayers.

Hugs and love,

Marie who loves kitties

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

For alerting the FB troops:)

Nice to see you once again.

I'm already at max pain relif, dangerously high ao hospital has nothing additional to add.

Besides, the chemical battle is a losing one and I need more direct intervention.  Something has got to help.

Love/Craig

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

 

My Dearest friend,  I barely know what to say...  :(  How very sorry I am to hear that you're still in such pain after that operation.  I had hoped it would provide you with a good measure of relief, but maybe the next one will do the trick.  My thoughts are with you daily, I just wish I could do something to help with your pain....  :(

Love ya buddy,

Cyn

 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Maybe the next one will help.....

Nice to have gift to reach outnwhile I still can....things change so quickly.

Thanks for being there:)

Hugs/Craig

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

I know that I could not fight as hard, and I admire your strength. 

I pray that you will know the best path to take from here and that as you try to find more strength, your Doctor's can find a way to ease your pain. 

Blessings!

SUE - TRUBRIT

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Just thanks, Sue...

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Much love to you ...and to Kim. Holding you close in my heart as it breaks open hearing of the great pain and struggle for you. I pray for rest and comfort for you my friend. 

Ride on, Leslie

 

 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

As Wolf Brand chili once said....It's been too long....

-c

Joy1216's picture
Joy1216
Posts: 293
Joined: Mar 2006

I'm praying for pain relief.  What a struggle you've been having but yet you hang in there.  You are an inspiration to all!

Joy

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I really don't know how you've done it all these years.  It takes a special kind of courage to get through a war that never seems to end.

You chose a good symbol for your avatar.

I so hope they can find something for you that helps with this pain.  I know from my own experience with much less pain that enduring this on a daily basis is exhausting and depressing.

Big hugs coming your way, buddy~AA

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Honestly I don't know how either...

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

Craig,

Sometimes finding our inner Billie is a challenge!  We are sending our thoughts and prayers for your inner strength to keep fighting the Dragon we all call cancer.  Please know many people are thinking about you and sending you strength.

 

Best Always,  mike

toyfox's picture
toyfox
Posts: 158
Joined: Apr 2011

I hope something is found to take care of you pain.
You have been in my thoughts and prayers for awhile.
Linda

 

 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Smile

Bless you, Linda...

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

It's been a long time since I've posted here, Craig. Like many others who've bailed out over the years, the influx of losses took their toll on me and when you're fighting an illness that is particularly stress agravated, pulling away from such immense grief becomes a necessity in order to heal. I have continued to follow you through your wife's posts and through the posts some of our friends on Facebook have made to update us all about you. Today, the message from Marie sounded urgent and it inspired me to send you my own message of encouragement and hope.  

I have not been anywhere near what you've been through. In fact, I'm fairly sure no one else in the world has either. You have a strength unlike any i've ever seen or heard of. I've read stories about people who survived months at sea; nearly starved and thirsted to death with the sun beating them into submission day after day, yet they still survived. I see your challenge with cancer in the same way as far as what the human spirit can endure even when the body is screaming that it's had enough. That spirit can go on as long as there is hope in the heart and a glimmer of light on the horizon, of which there always is. 

One thing I can definitely understand about pain is how it has a keen knack of altering our perception on whether or not we want to continue breathing. I've had that kind of pain, and when it finally ended I not only had a new lease on life, but my relationship with pain as a whole changed entirely. I still live with pain as a constant in my life, but I've learned how to both mentally and physically manage it. I've even been able to find contentment through it at times. When it gets worse than I can handle, I have back-ups for it. I'm pretty sure you've experienced this same thing time and time again in your past dealings with pain, so remember those times, and that they passed. as this time will pass, too. Carry on till your surgery and the healing process of that, and then go into plan mode so you can heal from it and come back stronger than before. You have all the tools you need to do it again; I mean how many times have we seen you do it before?! You'll get the upper hand on it one day, and then it will simply be gone. Just don't cry when you miss all the high octane excitement it brought to your life! You can always take up base jumping or mountain climbing to make up for the loss of thrills. lol.

Hang in there, dear, and know that you're always in my thoughts,

Krista   

 

 

 

 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

My nurses have been using that word strength.  Guess I don't know any better:)

Thanks for atopping out to see me it's good to see you.

-Craig

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Ah, my gentleman cowboy....I am sending all the good vibes I can....and warm hugs....

 

Love you with all of my heart....

 

Hugs, Kathi

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

I am sending all the strength and good positive energy. Living with pain is so difficult and you've handled it so well. I hope the pain will lessen. It's such a hard place to see people in pain and not be able to help. I'm certain that the friends you've made here would all jump in and take some pain to help you. Hoping words can help in some little way. 

 

Yolanda

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

This is a wonderful community over the years...great friends and good people:)

I'm blessed there.  Nice to meet you and thanks for your posts.

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Craig,

Sorry to hear about your pain ridden life.  Things can become good as fast as they go south to bad.  My wish is that you will have a change to fairer winds.

Prayers of comfort and a way off the slippery slope,

Art

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Craig,

thank you for sharing and showing us all how to fight this ugly disease. You are truly inspirational. Wishing you light, love, and relief!

Sincerely,

Phil

Annabelle41415's picture
Annabelle41415
Posts: 6249
Joined: Feb 2009

I'm so sorry that you are going through all this once again.  You are a trooper but you and your body can only take so much.  No matter how many people tell you that your are brave, strong and been through hell and back again it doesn't make any difference as you are the one going through all this personal turmoil.  Please let people know that you are feeling bad and admitting it here is a step in the right direction.  Get someone or some organization to help you deal with this.  If you need pallative care then best opt for it.  It's not a bad thing, only a solution to helping you dealing with the pain you are in.  You have been through so much and my heart aches for you and only want you to feel better.  Wishing for the best.

Love to you as well and big, big hugs!  Kim

jen2012
Posts: 1607
Joined: Aug 2012

Oh Craig,  your post is heartbreaking. i hate that you are in such pain.  we live in an unfair world and it makes me so angry.  My mom, like you I suspect, has never done anything to hurt anyone.  She is so giving and loving and yet like you is suffering in horrible pain all day, every day.  It makes me want to scream.  It's unbelievable to me that they can't find the right mix of drugs to stop the pain.  

if you are able, keep trying with pain mgt people.   maybe you will hit on one that has some trick up their sleeve that helps you.  

You are in my heart and thoughts throughout the days, even when you aren't able to visit with us. I hope you find relief from the pain soon.

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Hi craig, screw hugs, I want to send you large doses of morphine.  I feel helpless right now. I don't know what to say. Hang in there just seems like useless words.  I can't believe they made you sit and wait and didn't find an immediate solution. Helen

marbleotis's picture
marbleotis
Posts: 700
Joined: Mar 2012

Craig - you are our hero.

I send you love and good thoughts. 

janderson1964
Posts: 2215
Joined: Oct 2011

Craig it hurts me to hear about your ongoning issues with pain. I am always praying that the doctors will be able to give you some relief. I am however glad to see you using your new tablet. I am always glad to hear your voice and see the lion.

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Craig my heart aches for you. You have given and still give somuch strength and courage to all of us. We all wish that we could make the pain stop or at the least bearable. I pray for that every day. You know how much we all care for you, our feisty lion.

im afraid to even hug you when you are in so much pain. Please extend my love to Kim, seeing you suffer so must  be hard on her too.

much love being send your way, Marjan

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Craig, don't know which doctors around Dallas are experienced with IV vitamin C but our CAM doctor uses it frequently for pancreatic cancer pain relief.  Basically since pain is mediated by an oxidative process,  IV vit C's antioxidant aspect neutralizes it.  Renw got cancer and chemotherapy pain relief this way for the day.   Combined with other things like xeloda, menaquinone4 and/methylcobalamin and the LEF style supplements, it might help slow the cancer process itself down.  We have to push the "everything" part pretty diligently to reverse CEA and CA19-9 rises.

Here's one clinical cancer experience with IVC. http://orthomolecular.org/library/jom/1996/articles/1996-v11n02-p080.shtml  The limitations would be 5-7x per week for continuity on pain relief, out-of-pocket payment, and maintaining potassium-magnesium balances (cheap).  Infusion cost is overcome by dedicated supplie(r)s, i.e. (y)our own infusion nurse and supplies at home.  The opiate withdrawal is silenced by the vitamin C.

 

 

Fucc
Posts: 92
Joined: Sep 2012

Craig,

I haven't been online for a while and don't post often, but I do read your posts and have been following you.  I am so saddened to hear that after so many years you are in such pain.  I'm sending you positive thoughts and love, which in and of itself can be healing.  I don't know if this has been mentioned, or if you would be open to it, but you can try some medical marijuana to help with the pain.  

Carmen xoxo

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Craig - I wish they could find you some relief.  It's got to be awful to be in pain that way.  We understand if you can't post as often as you'd like.  Kow that we are thinking of you and praying that things will get better.  Take care of yourself, Traci

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

Sweet Craig

I am amazed at the will you have shown time and time again to all of here. So p.o.'d you are dealing with this crap.

You are THE baddest, fiercest warrior on the planet.

 

((hugs))

 

Peggy

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

I wish that there was a magic wand to help you. I have been struggling with pain from ankylosing spondylitis and psoriatic arthritis. I have run the gammit of the regular pain relief and they started me on a drug called Targin. It is a combo of oxycodone and naloxone. Naloxone is an opiate antagonist and the idea of adding it to the oxy is to stop people getting high and to stop Opiate induced constipation. It has worked to stop pain and I don't get high but man do i get bunged up. It is no fun and I have been told by my gp to take at lest two dolcolax with every targin so that it does not shut down motilty. I have to use several sachets of movicol between doses. It is working after a fashion tho I dread eating and have trouble knowing what to eat. Ihave lost 22 lbs since I started targin. I am still in trouble with my kidneys , they peaked in Jan this year when I was losing over seven grams of protein a day. I was put on cyclosporin and have come down to around two grams a day. Unfortunately cyclo is a constipating agent as well.. Wishing you well. Ron.

TheLadySkye's picture
TheLadySkye
Posts: 195
Joined: Oct 2013

Sending love and prayers to you.  Praying for miracles and that the pain subsides and...

*just hugs you to pieces - but carefully - so I dont make anything else hurt*

amcp
Posts: 251
Joined: Jan 2009

Dearest Craig I  don't post often.  I do check on you.  Most of the ones I kept up with have passed like my husband., but I often check on you to see how you are.  I am praying for you to have the strength, courage, and determination to with stand this pain.  I am also praying that something or somehow they can relieve your pain or make it at least manageable.  I am so deeply sorry for your suffering.  I know with all the prayers  that are being said for you that they will be answered.  Know that you are loved, admired, respected, appreciated, and looked up to.  You have done so much to help not only me but so many others.  Will pray for you daily and will check back on you.

Love ya

Anna

dorookie
Posts: 1736
Joined: Jul 2007

So good to see you are still giving the beast a run for its money! You are my HERO, I'm so sorry to hear you are fighting such pain, I too have pain everyday and can totally relate to what you are saying.  I can't believe they can't control your pain, there are so many pills or patches can't they give you something!!!!! It just upsets me so, your comfort should be their priority....

 

keeping you in my prayers

love to you and Kim

 

HUGS

Beth

PhillieG's picture
PhillieG
Posts: 4891
Joined: May 2005

Hang in there buddy!

ketziah35
Posts: 1154
Joined: Jun 2010

i struggle to respond to your post today. I am so angry at cancer for affecting the nicest people I know. I pray for you and remember that I know you have faith, but you also have the heart of a lion.

 

luv ktz 

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