1/2 Way of Protocol Nearly Completed - Here's Where I'm At - Sundance Update

Sundanceh
Sundanceh Member Posts: 4,392 Member
edited March 2014 in Colorectal Cancer #1
Well, I’m just about at the end of my rope now, I’m swinging by a thread here. This radiation has beaten me and has me on the ropes – combined with the 5fu pump, I’ve begun to really take a whippin’.

I’m breathing very hard right now, gasping for breath sometimes…and there is pain in the front and back of my lung (pleurisy). Also a tightness and spasming in the back of my lung as well. Not to mention, the fatigue, which has gotten much worse in Week #5 and now Week #6. Nice little burns on the front of back of my body where the radiation beams are reaching. I'm using an emollient called "PRU Tect" which is a generic cream used to soothe the radiation burns.

I’ve done 27 of 30 treatments of what is called IMRT. Here is a quick explanation of what that is:

“IMRT is short for Intensity Modulated Radiation Therapy. The intensity of the radiation in IMRT can be changed during treatment to spare more adjoining normal tissue than is spared during conventional radiation therapy. Because of this an increased dose of radiation can be delivered to the tumor using IMRT. Intensity modulated radiation therapy is a type of conformal radiation, which shapes radiation beams to closely approximate the shape of the tumor.”

So, basically, they “customize” a program for you in which they can “contour” the wave shape of the radiation to match that of the tumor. Think in terms of a “crescent moon” or a “dip in the road.” The radiation would wave shape and go down in the dips to attack that area of the tumor and not just pass over it.

I met with my rad onc today and he said for the first 4-weeks, I was doing well and going strong, but the start of the 5th week, they could see changes.

I’m reminded of a story a few weeks ago in the waiting room. A lady started talking to us and I told her some of my story before they called me back. Kim talked to her during treatment and when I came out, she said the lady called me a “CLYDESDALE.” And also remarked, “That it must take something pretty big to knock a guy like this down.”

I don’t feel like that today….I feel beaten and battered and will have to dig deeply to finish these last 3 treatments. I’ve also been carrying the 5fu pump 24 hours a day, 7 days a week for the entire treatment – the theory is that the “5fu by pump” combined with the radiation gives it a good 1-2 punch and complements the treatment.

The theory behind the 30-treatments is to catch the cancer cells in various stages of it’s life cycle, so that we get a better chance at knocking down as many cancer cells during various stages of their cell growth as we can.

Ok, I can buy off on that, but what a price to pay. The linear accelerator rotates 360 degrees and the table you lie on, can be rotated 180 degrees, so they can get to you from many positions. Currently, they are radiating me in 7 different directions.

You know, the thing I’ve got against radiation is it takes you down, down, and down to the ground. Even when you are feeling your lowest, you still have to merrily get your a$$ up on the treatment table and suck it up. You feel so badly already, like the “living dead” and yet you know you are only going to get worse, before things begin to get better. It’s a cruel, medieval treatment, even with all the advances we’ve made. To destroy the good and hoping to get the bad. “Thank you, sir, can I have another?”

I’ve literally felt the life ebbing out of me each day. There’s not much to do but take it and then get home and go to bed and rest. The waking hours are so painful, that I find my mind wishing for “unconsciousness” or even death sometimes.

Trying to pass 24 hours at this point, is so hard to do with how badly I’ve been feeling. I know I’ve got several weeks after rads are over to begin to feel human again – and there will be many more months of recovery as my lung is a complete mess right now with all of the scar tissue from the DaVinci surgery and the subsequent open thoracotomy and all of this inflammation from the rads treatments.

I’ve found that as the years march on, I find it is getting much harder to do all of these treatments and surgeries – they just keep ringin’ you up – you take as much as they’ll give you, and then some.

Sometimes, I think the radiation is the hardest treatment, because it does not give you any kind of break. Once it gets it’s claws and tentacles into you, it is merciless and continues to take you down, until you have nothing left to give.

I've done 3 different kinds of radiation now in my battle:

1. External Beam Radiation
2. Stereotactic Radiation (CyberKnife)
3. IMRT Conformal Radiation

I think that radiation differs with chemo, because at least with chemo, you can get “some good days” on your weeks of your "off cycle." But radiation puts you down - and keeps you down - and doesn’t let up….and that’s the big difference.

I’ve wanted to quit – I’ve wanted to stop – yet there is that part of me that continues to soldier on. I made myself a promise that I would attack this 3rd recurrence with all of the fire and fury that I can muster. I know it’s a critical battle in the fight for my life, so my attitude has been good and I’ve been a good patient and done what is necessary….but if this continues on much longer…well, we’ll talk about that another time.

You know, if Cancer is not careful, it’s gonna’ start to really Pi$$ me off!

Right now, I score this round of the fight as CANCER=1 vs CRAIG=0

I knew I’d lose this round, the odds are all in the House’s favor here. But I have not shrunk down and I’ll continue to swing away and finish up these last few treatments. I finish up on the 30th – and as a bonus, I’m unloading the PUMP a day before on the 29th. So, say goodbye to “tethering.” I’m always reaching for the durn thing, but I’ll be so thankful to be dropping that off for a few days.

I’ll get an 8-day break and then start back in again with Folfiri – 2 rounds scheduled for December, and then 8 more to start the new year. That’s going to put my 3rd Tour of Duty at 10-months of pretty hard battling. I try not to look too far down the road, as it can sometimes look so overwhelming.

I’ve got more things I want to talk about, but there is not enough room on this post – I’ve been pretty quiet and introspective during this time, just fighting my battle and trying to lend support to the community, if I have something to contribute that might help.

Cancer has certainly got the upper hand with me right now, but it’s a long race – and the race is not always won by the swiftest. Right now, he is throwing his big punches and I’m doing like Ali used to, I’m doing the “Rope-A-Dope” and just taking those blows, until he gets tired of swinging – and then I’m going to throw mine.

So, my Thanksgiving Message to My Cancer is…

“When I get back up – I’m Comin’ – and He11’s Comin’ With Me!”

-Craig
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Comments

  • Lori-S
    Lori-S Member Posts: 1,277
    Craig
    HUGS to you. I'm so sorry that you are feeling down for the count. Thank goodness you are nearly the end of the IMRT. It's got to be a double punch with the rad and the pump. Yuck. I am so proud of you for sticking it out. I can't even imagine. I really should stop complaining bout my chemo. All I can do send you some cyber HUGS and let you know that I am in your corner and thinking of you.
  • pepebcn
    pepebcn Member Posts: 6,331
    Lori-S said:

    Craig
    HUGS to you. I'm so sorry that you are feeling down for the count. Thank goodness you are nearly the end of the IMRT. It's got to be a double punch with the rad and the pump. Yuck. I am so proud of you for sticking it out. I can't even imagine. I really should stop complaining bout my chemo. All I can do send you some cyber HUGS and let you know that I am in your corner and thinking of you.

    Thanks for cheer me up Craig! (joke) Hahahaha!
    I'm in panic right now!LOL.
    Hugs!
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    You are amazing
    Dear Craig,

    Your ability to keep on keeping on through all this boggles the mind. Your so very strong in your determination. I wish there was some way that we here could pass on some healing and strenght to you to help make these last treatment days easier.

    We do miss seeing you here as much as you used to post, but continue to be amazed that you still show up for our party here when you are so beaten up by the treatment.

    I hope that your cancer is getting the message loud and clear that you are not one to give up and it may as well be gone.

    Hugs to you and Kim

    Marie
  • 462lt
    462lt Member Posts: 117

    You are amazing
    Dear Craig,

    Your ability to keep on keeping on through all this boggles the mind. Your so very strong in your determination. I wish there was some way that we here could pass on some healing and strenght to you to help make these last treatment days easier.

    We do miss seeing you here as much as you used to post, but continue to be amazed that you still show up for our party here when you are so beaten up by the treatment.

    I hope that your cancer is getting the message loud and clear that you are not one to give up and it may as well be gone.

    Hugs to you and Kim

    Marie

    OMG
    You are superman. I feel so bad for you. I will be praying for you.
  • pepebcn
    pepebcn Member Posts: 6,331
    462lt said:

    OMG
    You are superman. I feel so bad for you. I will be praying for you.

    Craig how long is going to take to get recovered ?
    Did doctors say anything about?.
    Hugs!
  • dorookie
    dorookie Member Posts: 1,731
    cancer sucks
    I am so sorry your having such a rough time. I remember my radiation days, and till this day I say it was way worse than my two separate rounds of chemo. I can hear the hurt, pain and fear in your words, I truly wish I had some great words of wisdom to say at this point, but I can say is I love you, and I am here if there is anything I can do for you or Kim. Even if you just want to vent or cry, give me a call I believe you have my number, if not I will PM it to you. Yes this beast can hit pretty hard but its not the one that hits the hardest that wins, its the one left standing and I just know it will be you my friend standing when this is all over! Stay strong, know we all love you, and are there for you...God Bless you my friend...

    HUGS
    Beth
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    pepebcn said:

    Craig how long is going to take to get recovered ?
    Did doctors say anything about?.
    Hugs!

    Talked to Him Today...
    It will take several weeks to begin to recover from the fatigue and general bad feeling - after the LAST treatment.

    Internal healing of the lung will take many, many months - it's going to be hard to gauge. There is a huge amount of inflammation up there from the treatments.

    CT scan in about 3 months to get a new baseline of what the lungs look like, but he told me it will really be hard to determine if the area treated has any remaining cancer cells left.

    Just watch and wait....just tryin' to kee it real for you, man. I don't believe in sugar coating things all the time - from time to time, I "bring it."

    I know you are going to hurt as I do, none of us are strong enough to resist the rads effects - just goes with the territory. Time will help us recover. Hope for the best for you.

    -Craig
  • colonblender
    colonblender Member Posts: 12
    hi,my husband had colon
    hi,my husband had colon cancer recection for stage 1 colon cancer about 15 months ago evry thing went well and we thought we were done with it having just to do follow ups but cea started rising ang a month and half ago they found one lesion in his liver and it took us really down he had liver surgery and started chemo since(1st round doone last week end)he is really down and i have been telling him all about you to give him the strengh( been reading the blog )we need you strong to keep going .

    thank you
  • colonblender
    colonblender Member Posts: 12
    hi,my husband had colon
    hi,my husband had colon cancer recection for stage 1 colon cancer about 15 months ago evry thing went well and we thought we were done with it having just to do follow ups but cea started rising ang a month and half ago they found one lesion in his liver and it took us really down he had liver surgery and started chemo since(1st round doone last week end)he is really down and i have been telling him all about you to give him the strengh( been reading the blog )we need you strong to keep going .

    thank you
  • AnneCan
    AnneCan Member Posts: 3,673
    So sorry Craig!
    I am so sorry you are feeling so crummy. You will win the WAR. I am so proud of you! You have gone places where no one has gone before, + continue to be a huge inspiration for me + so many others. I am glad you are almost done the radiation. Hang on to that thread; it will get better.
  • bruins1971
    bruins1971 Member Posts: 227
    HOLY COW
    Where to start except to say that I am sorry that your are going through such a tough time. It makes what I am going through seem small. I have stage 4 but I have not had to have any radiation just colon surgery followed by 5 rounds of chemo then liver surgery followed by another 7 rounds of chemo of which I only have 3 left. Then it's the million dollar question... Am I cancer free and if so for how long. I hope and pray it's forever but there is no way of knowing this. Right now I am just enjoying each and every day I am given. I pray that you will see some easier times come your way soon as you have already lived your hell here on Earth. Take care and thank you very much for sharing your story it's so wonderful to see people helping one another on this site.
  • CanadaSue
    CanadaSue Member Posts: 339
    So sorry you are having a rough time
    Craig,

    So sorry to hear yu are having a rough time, but remember the end is in sight!
    I know you can make it! You have such a fighting spirit, and you can beat this!

    You have picked everyone of us up at one time or another, now sit back and feel
    the energy that everyone is sending your way!

    Take care my friend, you and Kim are always in my thoughts!

    Hugs,

    Sue
  • Jaylo969
    Jaylo969 Member Posts: 824
    Craig
    Thank you for posting this and keeping it real. I admire your strength and endurance. You have fought like he11 for a long time and knowing you, that is still your plan. It is okay to feel weak and tired sometimes.Who wouldn't, having gone through what you have gone through?

    I was at the onc's office yesterday and the monthly hospital magazine was sitting on a chair. I picked it up and the first thing I saw on it was the proud message that my hospital now has 3 DaVinci's. The only hospital is this state that has access to that many.Well, of course I thought of my friend Craig immediately!

    Rest for now Craig. And when you get back up have he11 ready & waitin' to come with you.

    -Pat
  • C Dixon
    C Dixon Member Posts: 201
    Sundanceh said:

    Talked to Him Today...
    It will take several weeks to begin to recover from the fatigue and general bad feeling - after the LAST treatment.

    Internal healing of the lung will take many, many months - it's going to be hard to gauge. There is a huge amount of inflammation up there from the treatments.

    CT scan in about 3 months to get a new baseline of what the lungs look like, but he told me it will really be hard to determine if the area treated has any remaining cancer cells left.

    Just watch and wait....just tryin' to kee it real for you, man. I don't believe in sugar coating things all the time - from time to time, I "bring it."

    I know you are going to hurt as I do, none of us are strong enough to resist the rads effects - just goes with the territory. Time will help us recover. Hope for the best for you.

    -Craig

    Hi Craig,
    That last week is

    Hi Craig,

    That last week is really hard and I found the first week off to be the worst. It will be nice for you not to have the pump. I hate the pump. Why didn't they give you Xeloda? I suppose that is a moot point now.

    I know you can do it. You are strong. I hope you are really resting for the 23 hours you are not there. I had the same thing you are having. The machine wurrs all around. I only got six shots though, not sure there is much difference. My table didn't move around but I had a mold I had to lay in. Mine was to the liver not lung and I can still feel the inflammation on it. I didn't get any burns though.

    3 more.........you will make it........you will feel better.

    Fondly,

    Catherine
  • LOUSWIFT
    LOUSWIFT Member Posts: 371
    the fight
    Craig find something important to you more important than cancer or the damage to you its done or the why; the how much can I take; the why should I not give up? For me its my Grand daughters 3 yrs old; 18 months and one four months away from being born and me seeing her. I focus on them to draw my strength from them and away from cancer. True cancer sucks and the treatments are worst but there is nothing in this world like the hug of a grand daughter who doesn't even know why she loves you but unconditionally does anyway! I hope you have something like that to grab onto. Cancer can kill me but I still win because when I get worn down I take the count and I get back up and I will until I can't anymore. I know why I do it. I do this like so many before us and those yet to come who may through their suffering lead to a vaccine or a cure so that my grand daughters may know about cancer only by reading about it in a history book. You have been knocked down many more times than most. Yet when the dust clears there you are still standing and clinching your fists. Cancer must be craping its pants facing people like you! Lou
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Our strong teddy bear
    My dear Craig,

    It hurts me so much to read of your pain. You're always the big, strong teddy bear for all of us here, and I know you feel the "responsibility" of trying to be the strong one for us all the time. I just want you to lie down quietly and rest and think about all the good things in life. And know that we love you, we admire you, we pray for you, and we give you permission to scream or cry when you need to. Be strong when you can, and when you can't, here's my hand. Please take it and know that you mean the world to all of us.

    *hugs*
    Gail
  • Crow71
    Crow71 Member Posts: 679
    Rope-A-Dope
    Dude - quit yer bichin'
    Seriously - You may be swinging by a thread, but that rope ain't around your neck. This treatment is brutal, and carrying that **** pump around is awful. But you can take it. You can do it. You know you can. And when you come out swinging, you will be victorious.

    I was going to write a post tonight about how messed up the skin around my stoma has gotten and how much it stings. But after reading this I think I'll skip it.

    You are tough as nails. Stay strong and focussed.

    I hope you have some Thanksgiving happiness.

    Roger
  • Kerry S
    Kerry S Member Posts: 606
    The worst for me
    The worst for me when I had the chemo/rad was being on the john late at night and while in the pain zone, then hearing the damn pump push more of that crap into me. It really does do the job on the old body. They burned most of the skin right off my tail bone.

    Be prepared for a lot of good old percocet. (get the 500s not the 320s) I learned to let it dissolve in water first then swig it down after swishing it in your mouth. I does not taste bad and works on you faster that way. Hang in there. If an old SOB like me can survive it, you sure as hell can. I dropped from 185 to 155 thru that hell.

    Now when it is all over, go into the woods and cut 5 cords of firewood. It will build you right back up. I really hated that damn pump.

    Kerry
  • soccermom13
    soccermom13 Member Posts: 224
    Craig - you are one amazing person. You have given me so much encouragement and took the time to send words of joy to me when you were feeling so crappy. I hate this disease and what it does to all our friends on this board and more. Please know that you are included in my prayers. Happy Thanksgiving to you and your family. Shanna
  • msccolon
    msccolon Member Posts: 1,917
    sorry you are so down
    This post really hits home just how much cancer SUCKS!!!!!!! You are strong and have battled hard, and I don't doubt will continue to battle hard. However, that doesn't change the fact that sometimes we just want to cry UNCLE!!!!! When we are in pain and feeling like crap, we can't help but wonder if it really is worth it all. When you've been in the fight as long as we have and have put on the battle gear as many times as we have, it gets harder and harder to do. I agree with the post about finding something to focus on that makes it worth the fight. That's all we can do; fight until the battle is no longer worth the collateral damage. I'm facing radiation for the first time, and I won't lie; I'm nervous. I don't doubt that I will enter that fight, and I'm sure I will find the strength somewhere to battle on, but it still scares me. You WILL get back up, and heaven help your cancer when you do. Until then, remember that you have a bunch of people rooting for you.
    mary