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"The Chemo Wars" - What's the Real Story? *Updated*

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

I did some “old school” arithmetic and by my account, by the time I finish with this treatment schedule, I will have completed (51) rounds of chemo in my journey, not including Avastin.

That number shocked even me - guess I had just lost account as the years have passed…

I liken chemo to NAPALM and am often reminded during treatment, of all the war movies where the jets come swoopin’ in and drop the napalm out of the sky while the other team runs for cover inside their man-made tunnels.

The fury of the napalm (like chemo) is evident as it lays waste to everything in its path, while the enemy just waits it out. And when it’s all over, they come scurrying out of their tunnels and are ready to do battle once more.

And that’s how Cancer really works, isn’t it? It hides and waits, gathers its forces and launches another attack – in our world we call this a RECURRENCE.

And Recurrence, is always where the real battle of Cancer is ultimately won or lost. These are just the facts and if you ‘ve been on the board long, well, we know too many of our friend who we have seen this happen to.

Myself, I’m on the downward slope of Recurrence #3. I can tell you that the battle gets harder not easier. As I close in towards 7-years of hand-to-hand combat, I find it much more difficult both physically and mentally to keep “steppin’ up” and hitting it out of the park.

Perhaps, my body has just grown weary of all the abuse that Cancer has put me through. Mind and body wise, I am a weary traveler on the Long Road of Cancer – I’ve found that there are not too many rest stops along the way. And when you eyeball one, then you better pull over – that’s what they are there for.

I’ve got much more experience than when I started - that’s an Advantage, but I also think it can be a Disadvantage at times, as well. The problem with multiple recurrences, is you are fully aware of what you are going to have to go up against. You could sit down and write the script out yourself for all that you are going to have to go through again. And that pain weighs heavily on both you and your caregiver.

It’s a very long road you are both facing again – this 3rd Tour of Duty for me will be 10-months of hard fighting. That’s a lot of good time gone by the wayside, but with no other choice than to lay down, I went for it yet again. Still in the hopes, that I might get cured, I try and fight on.

But, am I really kidding myself all of these years…now a Stage IV with all of these years of “front-line action?” Could I still really be this naïve? That chapter is still a few more months away, after we wrap up treatment and do the scans, and get the “results” that myself and those that have followed me are waiting for.

Of course, I’m a little more realistic about things now than I was before I started – one would expect to change and grow between Years 1 and Years 7. I certainly see things a lot more clearly now and I have no misgivings as to what still waits before me. All I can do is get up everyday and take a step forward and see where the days go. The meter is running anyway, no matter which way it goes.

I think as the “wear & tear” on my mind and body continues over the years, I constantly am looking for that fine line that defines Curative to Palliative to End of Life.

Where is that line for me?

Where is that line for any of us?

Not even the greatest minds of our times can answer this question for any of us – of course, I find that the most challenging aspect of the disease. When to know WHEN?

As always, TIME will tell us all what we need to know. I just find it aggravating that I was given 7 more years of life and had to give 80% of that time to fighting “just to live.” The numbers really don’t add up for me, but as a stubborn and tenacious Texan, I just don’t know why I keep going sometimes.

Perhaps, it’s because I still have a shot at Cure that acts as the “carrot on the string” and keeps me forever advancing to that goal. And if I don’t make it, then maybe I will be granted at least one period of 6-months or even a year, where I could rest my mind and body and prepare for another fight if Recurrence #4 decided to announce itself. That would be nice – I need a Cyotoxin break so I can see again what’s it like to try and feel good and somewhat human again.

Chemo – it’s the chemical sensation that’s sweeping the nation – every hospital and chemo ward I’ve seen is jammed full – literally standing room only just to get in.

And what a novel approach – we’ll give you “medicine” whose mission is to kill and destroy any living cell that it comes in conact with. Now, that’s real space age technology there – talk about a targeted approach.

I won’t live to see it, but I do hope that there become better ways to attack this problem as the decades roll by – one thing for certain, Cancer is not going away. Someone will always be dealing with it – and let’s hope in the future, it is in a more humane way.

I really don’t fault the medical community – it’s simply all we know to fight with in 2011. It’s just upsetting that we are not further along and we could end all of this needless suffering that so many millions are going through each day of their lives.

Unfortunately, the Cancer Battle, is fought with the premise of ADDITION by SUBTRACTION. Which means we are adding time to our lives, by “subtracting” our organs in surgery, and our cells through brutal radiation and chemotherapy treatments.

Which brings me to another theory I’ve been mulling over. Are we really adding years to our live with treatment? Well, of course we are, but is what we invest in the fight, what we are getting out of it?

Case in point…I will have “invested” 10-months of my time into this latest cancer battle. Let’s say that I live for 10 more months…..what does that represent to me? To me, that’s a DRAW – I gave 10 to get 10, so we’re even. But are we really?

I left behind 5 wedge resections of my right lung – they cut out 2 ribs – they destroyed another 10% of my right lung with radiation treatments that had me on my knees, literally begging for death.

Draw? Well, we can call it that, ‘cause that’s probably the best case scenario for me this time. But as I’m trying to illustrate, we always lose more when we go up against Cancer – we can win some victories, but the costs of those victories are steep and come at a very high price.

And if I’ve invested 10-months and were to only get 6-months before my next recurrence, then my old school math, tells me that I’ve lost. And if it’s anything less than that……

And lastly, I wanted to tackle one of the biggest questions that we are asked advice for everyday up here – and it’s one of the most difficult to answer.

The Question: “Should I do chemo following my surgery?”

Our Answer: Has always been to do what you feel best and what your oncologist and medical team feels is right.

That disclaimer takes away the guilt in case we were to advice someone one way or the other and it was not the right path to take – that would be hard to live with for any of us.

Of course, the answer is never definitive. But, I did get to the root of this answer with my oncologist recently and I asked him this question. This is from his medical point of view and not just my opinion.

What he feels is right, is if there are NO cancer cells “detectable” then he is against doing chemo for all the obvious reasons, that you are throwing a “big gun” at this problem with no guaranteed resolution and that you are risking “Densensitation” to the chemo’s effectiveness and that over time, cells will change to make the adjustment , and then the chemo will fail.

He feels it is better to have the “Big Gun” chemo in your holster for when it’s really needed.

To further illustrate this point, I want to use my old Friend “Buzzard” as Test Case #1 and “Sundance” as Test Case #2. (Hope you don’t mind, buddy)

“Buzzard” – Test Case #1
Buzz had a lung tumor met that was successfully removed with surgery – he had clear margins all the way around – no “detectable” cancer cells present, so he and his team elected not to do the chemo.

“Sundance” – Test Case #2
I had a 6cm lung met tumor that was embedded into my rib cage and lay very closely to my spine. Surgery removed most of the tumor, including my ribs and the scraping of my chest cavity, but we did not achieve clear margins . Biopsy further revealed that there were cancer cells visibly present and thus we had to go radiation and systemic chemotherapy.

This might help some of you who might be looking down this road in the up and coming future. Any of us would be supportive with whichever route was taken, but this is a medical opinion from a well thought of surgical oncologist and does make for some interesting thinking on this subject.

The other topic we talked about was does Chemo Cure Cancer by Itself?

My onc and I sat down and spoke on this sobering topic – chemo and it’s role in our fights. He explained to me that Chemo in and of itself, will not cure cancer. This is not really news, it has been told to me by several oncologists and medical professionals that I’ve spoken to.

We know that it shrinks tumors, we know that it holds the line for awhile and prevents growth and metastasis, until its effectiveness in our bodies stops.

My onc gave me a good analogy that I wanted to share with you. It went something like if you have a million cancer cells in your body, then chemo has a better chance at catching so many of those during various stages of their growth cycle….but when we multiply that by hundreds of millions or billions of cancer cells, then the task is just too overwhelming for chemo to do by itself. Too many cancer cells at too many different stages of growth and therefore, impossible to eradicate all or most of them.

“The Chemo Wars.” I wish we could get this as more of a TREATMENT option, instead of a LIFESTYLE.

Because, honestly, I don’t know how many more rounds I want to do. I guess we’ll just see how this battle shapes up and then I can think long and hard on the future, depending on what we find out.

I want to thank everyone in advance for taking their time to read this. Many of you are in your first year or first few years of fighting, so it may be hard for you to understand my perspectives at times.

But, I’m speaking from a 7-year perspective and from time to time, I need to talk about the subjects and topics that weigh so heavily on my mind.

Who else can I turn to in my time of need? Who else would really understand where I’m coming from? What’s the point of my journey if I cannot have the free will to express my feelings in an open public forum and to tell you what I’ve felt and learned over that length of time?

I’ve put myself on the other side of my posts and if it were Me reading Me, I would want to know a little about what this guy has found out during his time in the battle. Why has he survived so long? What keeps him going? I’ve tried to show you many sides of myself from strong to fallible and I always like to tackle some of the biggest topics out there and I try and stay as real as I can, while still being very supportive.

I am one of a handful of people in our community who has been fighting this long, which puts me on a pretty short list of folks.

We always pay attention to the NED club and they are given high praise for their accomplishments – and rightfully so. But, I think the Long Term Actively Fighting segment of our community needs recognition as well, because what we are doing, is every bit as important and relevant in this community – I just wanted to stand up for this group and say that.

I certainly don’t want you to fight as long as I did – but if you find yourselves in my shoes, you will know that were those who came before you – that defied the odds – that thumbed their noses to cancer – and lived many years longer than they were given by their “trusted medical staff.”

For those of us about to fight – I SALUTE YOU!!!

-Craig

AnneCan
Posts: 3693
Joined: Oct 2009

What an amazing post. You really bring up some important points + are making me think. All of us in this battle make tough choices -daily/monthly/weekly. I totally admire you + how you have conducted yourself throughout this battle. I know you are a huge inspirational voice on this board. I am glad you are standing up for the Long Term Actively Fighting Segment; this is a group I hold near + dear to my heart + is why I started my thread asking for input from non-NED people. We are all survivors, whether we are wearing the NED tag or not. I respect + envy people who can say they are NED but let's not discount the other "survivors" + what they bring to the party. Be well, Craig.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Craig,

Thanks for posting this.  I was dx'd a little less than a year ago as stage IV due to "distant" lymph node involvement.  12 rounds of chemo, 6 weeks of radiation and one bright red colostomy later and I have no idea of how I am.  I do know that my secondary oncologist at USC Norris has been upfront with me from the start that my treatment was palliative not curative.

Surgery was in January, and I finally got around to seeing my oncologist yesterday.  He wants to start me on Erbitux, and I want to wait.  For some strange reason I would like to have six months or so of normal, or something like it.

If I have no active tumors, what does continuing treatment buy me?  6 months on the back end?  More?  Less?  What do I trade for that?  Do I give up trying to work (and all that brings with it)?  An all expense paid trip to Europe? Most of the things I thought of as my "life" a scant year ago?

And what will the back end look like?  Will I be healthy enough to make the most of it?  Or will it just be one last brutal round of treatments?

Would I be better off waiting for the cancer to metastasize somewhere and treating it then, rather than burning out this treatment option where there would be no visible results?

I see these as tough choices, and they require a frank conversation with my oncologist, as well as more testing to see where I, and my alien guest, actually are.

Jaylo969
Posts: 826
Joined: Jan 2010

Once again Craig I want to say I appreciate your honest and heartfelt thoughts. Craig, I wish I could have read this about 15 months ago.You and your Onc discussed this:

<<

Of course, the answer is never definitive. But, I did get to the root of this answer with my oncologist recently and I asked him this question. This is from his medical point of view and not just my opinion.

What he feels is right, is if there are NO cancer cells “detectable” then he is against doing chemo for all the obvious reasons, that you are throwing a “big gun” at this problem with no guaranteed resolution and that you are risking “Densensitation” to the chemo’s effectiveness and that over time, cells will change to make the adjustment , and then the chemo will fail. ">>>

I was dx'd as stage II a/b...large tumor but no apparent spread. I was given the option of chemo as 'preventive' and it was left entirely up to me to make the decision. Had an 80% chance of NO recurrance w/out chemo and went for another 7-8% at the advice of healthcare professional friends who stated that they had seen stage II come back with a vengence.My onc. felt that as young as I am ( not 80 yet) it might be a good idea to try chemo. So, I did chemo ....and I wrote more but I didn't want to discourage anyone else's decisions so I deleted most of my comment.

I think of you often Craig and I do salute you and all the fighters and survivors of this terrible disease. You are all so very gracious.

Thank you Craig! I am pulling for you my friend.

-Pat

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

I write this on behalf of my daughter, Johnnybegood. I'm sure she will post when she is feeling better. Today she is getting her port put back in to start the fight again. Next week she will start the dreaded chemo infusions with the chemo bead treatment on alternate weeks preceding a surgery for the liver and lung mets recently discovered. She had done the mop up chemo after the first surgery, but to no avail. I was not with her during this chemo, but she became deathly ill and yet continued on. As her mother, I must simply tell her "You can not give up". But, when she asks "Is this what the rest of my life will be like?", I have no answer. The only hope is that maybe this time it will work or that in the near future some major breakthrough will take place.

I praise each and every one of you for being strong and withstanding all the torment you have been put through and yet continuing to fight.

Please keep Johnnybegood in your thoughts as she starts this journey again.

Thank You,

Wolfen

OGammy01
Posts: 67
Joined: Oct 2010

Oh my, what great posts these were! I really needed all of them.

Thank You all

Diane

LivinginNH's picture
LivinginNH
Posts: 1302
Joined: Apr 2010

Hey Craig, As usual, you've provided a wonderful thought provoking post. You are quite the soldier against this tenacious disease - and I salute you sir! Luv, Cynthia

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Thank you for sharing this post and your thoughts.

As you may have read about me, after a very short 9 months from orginal dx and 3 months of heavy, debilitating FOLFOX, I have a recurrence in my colon and have been taken off FOLFOX to never have it again due to my reactions being so severe last time that they brought out the crash cart. It just seems so unfair that I would have a recurrence so soon and after putting myself through such brutal treatment. I guess in my case ... no ... chemo does not cure cancer. And now Ive burned out one of my options since I can't ever have FOLFOX again.

Now, I am gearing up for another surgery to remove the new tumor and I am just hoping that this recurrence is not setting the stage for me because I don't know that I could be as noble and inspirational for others as you have been for me.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

You can use me as a lab rat anytime you want buddy...It was my option after talking with my Onc that I do no chemo...I really didn't see the point, she agreed with me.no node involvement, all clear margins, there simply wasn't any reasoning behind it.....You know my new Onc is 35 years old and I did ask her how old she was when I first started talking with her on my first appt. She got kind of a look in her eyes and I told her in no uncertain terms... and I quote.." I want someone who is young enough to not be afraid to be aggressive when necessary and also not be aggressive when not necessary. I also want someone young and with different opinions on what actions should be taken with different cases and not so damn young that they choke when called upon"....I said now young lady, if you meet my requirements then Im all yours....she looked at me and said" don't let this look of youth discourage you from thinking there is no brain behind it"...I gave her a big hug and my journey lies with her now.........
Its a matter of how long with me do I want to live like this...I actually don't think much of dying, but I am realistic as well...Actually last night told the wife that there are a lot of things that are out of my control with this, one is when my ticket will be cashed, but if I get to where I think Im getting close, I want for my children to remember me as I am now, healthy (to their eyes anyway) and strong. When I know that its a matter of time ( and I will know) then my wife knows when I say enough, then whatever shape or condition I am in, then that will be all of it. I will not ever put my family through the misery of watching their daddy fade away.....and I will never ever cause my family to lose all they have because of my illness...you just have to take that one with a grain of salt...my soul purpose is to save enough money to assure they will be ok, and after today I know what needs to be done....sorry about rambling on your post buddy, you just bring a lot of feelings to the top with your insights.....Yours in Hope, Buzz

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I feel the same way about having those I love having to watch me wither away. I myself have already taken steps to make sure that doesn't happen.

Unfortunately, the money going for cancer was something that I couldn't help. It bothers me to this day. See, I was told by the first doctor 9 months ago that I was "just a stage 2 .... no need for chemo ... just go home and live your life". But, Something just didn't seem right to me and so without health insurance, I had to find a way to find out more of what was going on. I am glad that I was able to do that but, now with this damn recurrence, I am questioning whether I'm on that long road that I would have preferrred not to travel and question my decision because I may not be able to make up the money that I've spent that was original destined to go to take care of my children, especially my youngest son who can never work and needs lots of care. I just wanted to do my 12 rounds of FOLFOX and then go on with my life and replenish my bank account. My biggest fear now is that I won't get that chance. Cancer sux

AnneCan
Posts: 3693
Joined: Oct 2009

You already are a huge inspiration to me - you are dealing with so much and with such grace and humour.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

HUGS

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Dear Craig,
I don't take the time. I shoot in look around see something interesting maybe a comment or two and i'm out. I see alot of pain on this board and it scares me. People around me think I'm on too often, but they dont see the knowlege and wisdom here. Nor do they understand the connection of talking with someone else who has been where I am, mentally phisically and spiritually.

I am currently part of the NED club with 5 weeks of post Op chemo to go. I opted for the chemo because I didnt know any better, with no nodes, clear margins, stage one I wouldnt do it again. it's been tough. I didnt want to take any chances. now I see the bills to my insurance company. I know how much the hospital charges for my 4 hours in the chemo lab and the doggy bag I get to take home for two days. It's a business of course they want me to do it. They are not with me through the side effects, the family on the CSN boards are.

I try to be supportive of everyone on this site because I could be in your shoes tomorrow none of us have any guarantee. I dont feel that I know enough about recovery to offer anything other than hope and prayer. Sometimes I need a break from seeing all the pain and loss that is here so I take a few days away from the boards, then something brings me back. The people here are a big family. I have allowed myself to get close to a few but it again scares me. Your story Craig as well as many others cares the **** out of me. I don't want to go through it, I have had enough pain and torchure in one year with my story that the thought of enduring more turns my stomach.

I am glad I took the time to read your post and all the one below yours, you are truly an inspiration to so many here as Im sure you are in your family life as well. My hope for you and everyone suffering with the disease or side effects from treatment is that we find peace of mind. Whether that means acceptance of our fate or fight is an individual thing. The fight goes on in each of us NED or not. The fight to remain sane through it all is sometimes tougher than the physical aspect.

And writing a long post without spell check is damn near impossible for me.

Peace,
Tom

Lovekitties's picture
Lovekitties
Posts: 2942
Joined: Jan 2010

I certainly can't speak with any experience regarding chemo or radiation, as I opted out of both after surgery. For me it was the right choice, but not necessarily the right one for others.

I think that with each decision we must make we weigh the options and possibilities of the day and do our best with feeling good about our choice.

For those like yourself and others here who have had to make those decisions over and over, the cumulative effect can be overwhelming.

Life is an uncertainty for all on the planet, but for those like yourself who fight so hard it seems that there should be some light at the end of the tunnel, not an oncoming train but a life with health and happiness.

Praying that you find both soon.

Hugs,

Marie who loves kitties

Dharma girl
Posts: 40
Joined: Jan 2011

Craig, thank you for the post and for sharing your experiences with us.

My mother had surgery. PET scan and blood work came back ‘clean, NED however, her oncologist wants her to do both chemo and radiation. It seems a little redundant.

You make a good point about only using chemo when you need to bring out the big guns.
I wonder if the body builds a resistance to chemo ? I will defiantly be doing some research to try to find a answer.

Again thanks.

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

As usual, you go right to the heart, Craig. I honestly don't know what I'd do in your shoes, my friend. I realize once again how fortunate I have been in my journey with cancer. There are so many variables, and I think each person has to decide that one for him/herself. I don't believe even family can help with a decision like that but so much, because they're bound to be emotional about the whole deal.

I just pray that you will find a treatment that will keep the BEAST at bay and allow you to have some real quality of life. You've been through too much for so long.

*hugs*
Gail

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Well, I know this was not one of my popular posts, but I felt it had merit to discuss this most delicate topic. With all of the treatments I've done, I'm been ruminating over this subject for many years, but has brought more to light as I've done more treatments and witnessed what has happened to others since I joined the board.

I use to hesitate in posting such material, but found that when I did, there were always some folks who were glad that the topic was brought up - we just had to turn the light on and then it was ok to discuss it.

I always feel like it's best for us to wrap our minds around the heavy issues and deal with our cancers head on - in that way, we take back some of the control of our lives and are better able to deal with subjects such as this one.

Thank you everyone for your input and support and I'd like to add the following:

ANNIE:
Thanks for your compliment last night - I liked this post and thought I did a pretty good job on it - it read well and flowed and contained many good aspects of the topic. It's in the book for sure:) And I do look forward to the day when we can meet if that's ever possible.

BLAKE:
Your points are exactly the reason I opened this post and contain many of the thoughts that have had me thinking - would it be better to take things up front instead of on the back end. I don't have the answer yet, maybe after this round of fighting I will. I certainly what you are saying and I appreciate you stopping in on this post.

KATHY:
My dear Canadian friend and confidant. I was so hoping that you would read this and give me your feedback. I appreciate everything that you had to say. You are doing so well and handling your chemo much better and I applaud you for all that you are doing in your fight. I do hope that when I get to Canada, that I can meet you as well....be a real treat.

PAT:
I wish I had known this 15-months ago too and could have relayed it to you, as well. You're so nice and very supportive of me and have always been in corner no matter what. I wonder about you and hope your life is settling down and you are getting some "Pat Time."

WOLFEN:
Thank you for your compliment on the writing on my post...I appreciate that so much. I certainly will keep Johnnybegood in my thoughts as she picks up her sword and her shield and marches head-long back into the battle.

DIANE:
Glad the post and all the responses were of some benefit and help to you:)

CYNTHIA:
Your continued support means so much to me - tell Rick hello for me!

LORI:
I worry about you and all that you've got going on with your life. Most of us have lost Folfox as a weapon in our arsenal, but Folfiri is still there. I'm so glad that I can mean somthing to you, as your strength and perseverance mean so much to me...want some good things for you and your son.

BUZZARD:
My old compadre:) I will write the book - this morning on the way in, I was thinking about putting you in one of the chapters...the "trash can" theory...look out, Montana might just throw it long, LOL:)

TOM:
Know my story is a little scary for many - but it's important that I tell my story so that others can gleam from that what they will. I fight on and do my best and know that you will also. Semper Fi!

KITTEN MARIE:
Another wonderful supporter to me and I appreciate your good tidings and well wishes for me. Maybe one day I'll realize the fruition of your wishes and get some of the good things too.

DHARMA:
I'm glad that you were able to see some positive in this post - I think about these things and figure someone else might be as well and it's for those that I'm trying to reach. Take care and welcome back to the board.

GRACI:
Know my posts are sometimes a little "strong" but they spring from my inner soul and I have a need to explore the mysteries and myths of cancer - not only for myself but for the community as well. You've always been very supportive and I thank you for that.

GAIL:
Every day that I think about you, I thank the lucky stars that you were spared most of what you have read about here. I would not want that for you or anyone. I've found that are no Oscar awards, balloons, or ribbons for having to endure all of that. I really feel that Cancer is in your rear view mirror and it could not happen to a nicer person.

Take care everyone! Margarita #9 is coming up in 5 days for those still keeping count:)
I'm gearing up for the stretch run.

-Craig

Fight for my love
Posts: 1308
Joined: Jun 2009

Hi my buddy,sorry I am late.I am concentrating a little more on myself right this moment,trying to get a driver's lisence,trying to prepare resume,collecting job hunting information,anyway it's time to do all these things.

It's nice to see your post.You are one of the most intelligent and wisest people I have ever met,and I think you know everything.Sometimes just because we know too much,we have to make harder decisions.No matter what your future chioces are going to be,I will understand and always wish you the best.

In my mind,since my husband's cancer,I have not stopped thinking about cancer even just for one day.I have to admit it is haunting me.I always worry about a lot "what if"s in the future.It seems like every step in life is a challenge.I am learning to live with it.I hope my husband stays NED forever for sure,but deep in my heart there is a lot "what if"s.

Thank you for this heartful post,this post resonates my heart again.Hope you are doing well.Take care.

Kathleen808's picture
Kathleen808
Posts: 2306
Joined: Jan 2009

Craig,
Thank you for sharing. Every time I read one of your posts I learn so much. Since I am not the one with cancer I don't know how it is. You help me understand.
I respect you so much Craig. You are one strong man.

Hugs.

Aloha,
Kathleen

amcp
Posts: 251
Joined: Jan 2009

Craig, you are so gifted in putting this battle into words. You should write a book...it would help so many. Frank, my husband of almost 42 years as you know lost his battle after 4 years of hard hand to hand combat. He went through 4 major surgeries, almost 2 and 1/2 years of chemo and three phase one clinical trials. Seeing what cancer did to him...I question why...we would not let our pet suffer this way...I have no answers. I know that I wish I had just one more day, hour, minute, second to hold his hand, touch his face, look into his eyes. The emptiness is permenant! So maybe the reason he endured so much was for that one more day, hour or minute for us to be together. He did not have to decide to continue fighting...they told him when there was nothing left to try. Home to hospice ...but he still fought. I held his hand as he took his last breath. I am so thankful for every minute we had together. None of us really know if we have another day or another hour, cancer patients realize it better than anyone. I do not know if this helps or even makes sense, but you gave me a wonderful gift. YOu helped to make a fantastic memory...us driving to Nashville singing along with your Christmas CD that you sent us. Laughing and having a great time. I continue to keep you in my thoughts and in my prayers.
Hugs, Anna

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

FFML
I'm glad to see you moving forward with your life; that's good. Your ticket is stamped, you are both so young so go now and get it. You do have much going on. It's always nice to hear from you and seeing you back on one of my posts, thank you for that.

Kathleen
You always have such sweet and kind words for me, but your response really made me feel good. I have a love for the community and as such want to share what I learn. Know the topics are not always easy, but as a teacher, you can certainly understand that as we talk about the different topics - we grown, and we learn. I'm proud to be a part of that here. Aloha to you and Dick!

Anna
I made the cd for folks just like you and Frank. I thought it was a gift of memories, more than a musical cd. In reading your response, I see clearly that I was right in that and the reason I did it was to bring some joy into your lives...I see you and Frank hummin' down the highway singing the songs and it gives me a warm glow deep inside my heart. That's the way I want to remember you both, that frozen image embedded in my memories...you think I made you a memory, but you made a memory for me, by telling me this tale. And memories was the "Reason for the Season."

Graci
Just wanted to say thanks again and I appreciate your encouraging words. You know I like to tackle tough issues for the group and bring them out of the darkness and into the light. Then, we can see what we're up against and that it's ok to talk about this. My role here is to support and help educate anyone I can from what I've learned along the way. Sometimes, it's not the most popular thing to do. But when we RISK NOTHING - we GAIN NOTHING. I'm strong and intense, but still loveable:) I do it because I care about all of you and all of you are my motivation for the hard hitting posts...I'd rather us know about it and wrap our minds around it, rather than to ignore it and pretend it does not exist. It's not easy, but I feel necessary to our survival.

Thank you again, guys, for your participation on this post. It's possible that many more read this, but chose not to comment, or could not because of the subject matter.

But I want you to know, that for those that did or contacted me via PM, that your responses were/are very imporant to me and I thank you for that.

-Craig

Nana b's picture
Nana b
Posts: 2912
Joined: May 2009

Thanks Craig! I don't want to be redundant, all the posts here reflect my deepest feelings as well. I have been fortunate to be part if the NED group since the end of my first cycle of chemo and I do not feel like I deserve ant hip hip Hoorays! You, people like you in treatment for so long are my heroes! It's you that gives me encouragement to face a possible recurrence. I thank you for sharing such inner thoughts; you give us much to think about. Keep writing, it's good for the soul, and good for us!

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Dear Craig, I have been away for a few days, supposedly to have liver resection. Just got back and wanted to catch up before posting my own story... your post and words are amazing and profound. They touched my heart and my mind. I can't add to what all the others have said but did want you to know how much your words mean to me. They could not have come at a better time. Bless you, Joyce

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Nana:
Some of the sweetest works you ever spoken to me, I'm honored. I try to cover as many of the cancer bases as I can....I think it's important to get the message out there, so many we may have never met might be lurking and just reading, but get something out of it that could help him.

Of course, when I write - I write to the community, just like we're all sitting down in the same room together, it's comforting to think of it in terms like that. Thanks for your continued support and friendship.

Joyce
I'm so honored that you feel this way and that my words reached you in such a wonderful way. That's when I know I did good. I like to be able to draw thought and feeling to the surface, where we can get our hands on it - and our minds wrapped around it.

Sometimes, I time a post so right and I'm glad when that happens. I'll receive PMs from folks telling me they were glad I posted material like that + the comments I get on the thread itself.

That's why I stay here - to support and try and help my friends and all members in the community.

Thank you both again!

-Craig

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Craig,

I do so enjoy reading your "from the heart" posts. Sorry I'm just chiming in now- I missed several posts here and there over the past few days, and I unfortunately missed this one until now. When you wrote that you figured you've had chemo 51 times, I thought about how much I've had. In my 3-1/2 year fight, I've only had breaks from chemo that add up to 8 months total- that's even including a recent 2 week break. Diagnosed in 8/07, that means I've had now had 2 yrs and 9 months of non stop chemo. Six of those months have been either just Xeloda or a combo of Avastin and Xeloda. The rest of the time (2 yrs, 3 mos) has been solid time of regular chemo infusions at least every other week of being on Folfox/Avastin 5 months, Folfiri with Avastin and Erbitux 4 months, regular Folfiri and Avastin 12 months (two times of doing the 6 month stint), and I've now been on Gemzar/Avastin/Xeloda or 5FU for a year. Oh- and 2-1/2 months on a combo of interferon and Lovastatin on an experimental treatment in Nashville that didn't work at all for me. Some of my chemo time was on an every other week schedule and sometimes it was 2 weeks on, then one week off. I figure I was getting chemo close to 2/3 of all that time. Must be close to 100 times of getting chemo in all.
It always surprises me now when someone asks when I'll be done with chemo. I guess for now the real answer is either when I die or when I'm cured (or cured enough possibly by natural treatments to go off the chemo and stay on the natural supplements/enzymes). I certainly don't know the actual answer- I still am hopeful that I can beat this. But, knowing that my CEA shoots up big time in even going off the chemo for just 2 weeks, being able to ever actually stop the chemo doesn't sound too likely. Yet, I still remain hopeful and prayerful. Not that I'm not realistic, Craig, it's just that if I really allow myself to say out loud what might happen to me, then I lose hope & fight and would just want to curl up in bed and never leave it. I can't do that for my own sake and for the sake of my family. Also for the sake of others I know who are fighting cancer- I guess a big part of me enjoys "carrying the torch" and showing others that there is HOPE and that LIFE still happens even during ongoing cancer treatment- palliative or for the cure- whatever it may be.
My next scan is a week from today (on St. Patrick's Day) & am I nervous for it? Yes, in a word. I'm worried that even though my CEA has dropped some lately, that the almost 3 months of it rising since my last scan, that the scan results will still show more cancerous growth since my last scan in November (because if anything is turning it around, it wouldn't have had enough time to turn around the damage done while the CEA was rising). I worry about if I can handle the news that I perhaps will get- more tumor growth and perhaps even something spread further. The spread of more tumors is what I worry about the most. During my 3-1/2 years since diagnosis, my tumors in my rectum, liver, and lungs have shrunken, grown again, shrunken, grown again- you get the idea. But nothing has ever spread to any organs or areas beyond what I already had at diagnosis. I am still better off now than I was when I was first diagnosed, so far as the number of tumors I had then. But, as of my last scan, I'm not far off from where I was at diagnosis. My treatment in the last year has more or less just been acting like a "dam wall"- holding things fairly stable, but not making anything shrink or go away. After having "used up" all the FDA approved treatments for colorectal cancer and having done one experimental treatment, and now for the past year having been on a chemo that is not FDA approved for this kind of cancer (Gemzar is normally used for some kinds of breast cancer, kidney cancer, and some forms of lung cancer)- well, there's nothing left that my onc knows to use on me. I've looked into qualifying for clinical trials a few different times now & I can't seem to find anything that I qualify for or that actually is recruiting candidates at the time I need it to be. So, that's what's fueling my worry if this upcoming scan should show growth or anything new- what do I do next?
That's what had me starting in with the naturopathic dr. recently. I thought- my body has really done pretty well with all the chemo poison I've pumped into it. In all these chemo sessions i've had, I've only not been able to get my chemo due to low blood counts two times. Two times of about 100 chemo treatments- that's really pretty amazing! My onc is always amazed by how well my body has held up. I want to further support my immune system with the enzymes and supportive supplements to help my body stay strong and possibly fight this cancer more naturally and with less chemicals.
That's where I'm at right now.

I'll give my scan report in another week plus a couple of days, when I've gotten the report back (and no, I won't wait for my onc to give me the news- I'll march myself down to the hospital records room the very next afternoon and request a copy of my scan report myself- I always like to know ahead of time so I can digest the news- good or bad- then I'm ready to talk "business" with my onc with a logical head on my shoulds and the emotions then don't get in the way).

Onward and forward everyone...!

Lisa

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

Craig I am in my 9th month of diagnoses. Each of the chemos, radiation, surgeries, changes in chemos I have been through made me feel like a freak experiment and think (as I walk around my house or drive to the store, etc) at times that I must be sleeping a nightmare and will wake up eventually. The times I had no idea what to expect, I came here. I realize it was the experience that each person went through that was explained to me and we are all different with our reactions and recoveries, but I just want you to know how important and supportive that is. You are soo important in my battle!!Everything you share gives me perspective. And I really really really think perspective is important in that it shows options and possibilities. It just says it is what it is.

Love and hugs to you! Gail

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

Hi Craig,
Ive been on the downlow for a while but under the reccomendation of a great, wise and wonderful man, Im reading your post. As usual you are the writer of all writers, and I wished that I could express myself the way that you do. As for the chemo wars, yup we all can just totally relate to it. Like Buzzard said you should write a book, I think that is an excellent idea and you are so very capable of such a task. I had decided to take a year of no chemo and instead did three rfa's and I had just completed stereotactic radiation at UW in Washington. I am now faced with the possibility of further mets, my cea is jumping to new highs and am scheduled for a pet scan next week. I am taking in the realization of doing chemo once again and I hate the idea. We are damned if we do and damned if we dont. (just my opinion) But I had the luxury of a whole year off the grid and got to enjoy life to the fullest, but again must move back to the reality of it all. I look to you for your strength, just reading your posts have encouraged me and gave so many of us hope and answered many of our questions without asking. Hang in there, I know you will because you are definitely a survivor and one of the strongest people I know. Much love to you and Kim.......
Donna

SueRelays
Posts: 489
Joined: Dec 2009

LOVE EVERY WORD CRAIG!!! Especially the AC/DC SALUTE :)!!!

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Donna
How nice to hear from you again and thanks for taking time to read my post and comment. I'm hoping that you will get things back under control, but a year off from this mess, must have felt pretty good. I'm sorry you are back in it as so many of us, recurrences are never easy and that's the problem fighting systemic disease. But, I'm pulling for you and hope you are OK out in Hawaii - saw the tsnumani news and am worried about you.

Sue
Always good to see you again and thanks for the kind words and for taking the time to read my post. Hope all is well with you:)

-Craig

ron50's picture
ron50
Posts: 1288
Joined: Nov 2001

I am and will always be one of lifes accidendal tourists. You talk about how many sessions of chemo that you have had,and it seems enormous. I have to admit that I had cancer in the days when they used to throw the kitchen sink at it. I think they may have used the kitchen sink to mix the chemo. There were no ports or pumps ,chemo went in via canula in the back of the hand.I had 48 weekly sessions of it. It was funny I would react badly each week and feel crook enough to die but my blood counts stayed on an even normal line. It failed to kill me and I suspect it did kill the cancer along with what the surgeon removed. So now here I am a couple of months into my 14th year of survival,still cancer free. Now instead of fighting cancer I fight the long term side effects of cancer and chemo. I asked my onc if my problems are directly related to chemo. His slant on it is that they are weaknesses and problems I would have eventually faced,chemo has simply hastened their onset. I have been on four different drugs,all immuno-suppressants.for various serious auto-immune problems. They are less pleasant than chemo. That is something I never thought I would say. I am on anti-biots again at the monment for the latest legacy of immuno- suppressants ,another tooth bites the dust with an abcess ,that will be number nine since cancer. My latest drug,arava, has just done a job on my liver ,so they are waiting for things to settle before trying imuran. It is a front line organ transplant drug. I have decided not to go there. I will go back to non steroidal anti-inflammatories. They will destroy my damaged kidneys but at least i may have some quality of life. Chemo wars is a very acurate description. Ron.

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

I've followed your story and read your posts - you were an early pioneer....my onc talked me to the other day about a guy that started with Levamsole (spelling wrong) but it reminded of the drug I think you started with - out in in the bathtub.

Your long term effects have always struck a chord with me and I wonder if I make it, will I be in similar shape as the things you have gone through.

I admire your strength and you fought a great battle - I know you've paid the price, I feel the "bill" mounting for me as I try and wrap my battle up - heading towards 7th year of fighting....too long.

Thanks for posting on this thread - I continue to think about how you're doing and how you're handling things...I appreciate your input.

G'day, Ron!

-Craig

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

I salute you :)
Janine

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

Your post was very eloquent and heartfelt, as usual, and it brought tears to my eyes. I can only imagine how miserable it has to be. How tired and sick, and sick and tired you must feel. I've been to the point of wishing for death, and it is not a nice place to be.

Anyone who knows me on this board knows my feelings on chemo, and your description of it is pretty close to how i feel about it. The biggest reason why i opted out of doing chemo this time, even after my onc highly recommended i do it, is because i couldn't see the point in dropping a nuclear bomb on a civil war; Everyone loses. I know how controversial this is; there are people who swear their chemo cured them. I'm not someone who could disagree with them. Maybe it did? All i know is that it didn't cure me, so i tried something else. When that didn't work, i tried something else, and then one day, my scans started coming up clear. I found what worked for me, and i believe we all can. Craig, if chemo isn't working for you, please try something else. I hate so much to hear that you're suffering. That's no way to live, but i don't think you need to give up, either. If you continue on this path, you will give up. I mean, how much torture can a person endure before they fold? You're such a strong person, and you've endured more than most could, but everyone has their limit, and it sounds like you're approaching yours.

You deserve to be healthy, and to feel good.

This is my two cents, and i risk the terrible backlash this reply may cause because i care very much about you. You're one of the most inspirational and thoughtful people on this board.

Much love,
Krista

P.S. Lisa D., you're a tremendous inspiration, too. I don't know how you're doing it, but you look amazing!

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

My friend do you wonder maybe a little why it took me so long so respond to this post?
So many thoughts you put forth, little joys, little sadness's, little philosophy, all about life.
How does one respond?
As for the NED and the soon approaching NED (I think I'm there, but that jinx thing stops me from saying so)no high praise for accomplishments, I did nothing to accomplish that, sure I did chemo, so did everyone else, sure I had surgery, so have most, did I do anything different? No, so no high praise for accomplishment, a happy dance or two, a congrats, but I didn't do anything different. And even maybe I didn't fight as hard, there are others that had to fight harder, hell, I breezed through it, so what, I was supposed to die, I didn't. Do I deserve high praise for that? No. Do I get a happy dance, HELL YES!!!!
The praise goes to those like you, who have suffered so, and continue to do so, and yet you are here giving us ENCOURAGEMENT, HOPE and your LOVE. You give us advise, help us along.
Hell, Clift, Kerry, a certain person named Craig, Jennie, Loris, Gracies, Kathys, Nanas, Lisas, so many I can't mention all, have been here, helping me along the way. When I was in the pit of despair? Who was there? Hmmmm??? Always, everyone of you, there for us rising minions of newbies. I think without you all, I would have been long gone.
And my friend, I'm with you every step that you take in winning this fight for life, through your treatments, everyone you go through I think about you, I think about you each and every day.
You've made a difference and shall continue to do so.
For all that fight and continue to do so, I salute US!!!
Winter Marie

Wenchie
Posts: 88
Joined: Apr 2009

Craig:
I'm speechless; this post is a work of art. I'm 5 years into this hell and all I can say is that cancer is a very lonely disease. I constantly feel as though others, family included, just have no clue. With your permission, I would like to copy and past your post to a few friends/family. Often times, like today, I just want to throw in the towel and then words from an old friend echo in my mind..."what if I give up today, and a cure is found tomorrow?". Sadly, she had metastatic breast cancer and was an MDAnderson clinical trial participant for Taxol many moons ago. In the end, she had no evidence of disease but passed away from sepsis due to a ruptured intestine. Geez, we just never know what tomorrow will bring. Once again, thank you for your brilliant writing and for bringing me to tears on this Wednesday night. You are a gem and I would love to meet you one day in person.

bigCrandy
Posts: 75
Joined: Sep 2008

Bravo, Craig, Bravo. Your short story is right on. I've been doing chemo for the last 4 years, I've had 66 treatments, that's counting 20 of Avastin only. I'm stage 4 with lung mets also. I haven't had lung surgery or radiation and hope I never will. You are a true warrior and also an inspiration to all of us dealing with cancer on a regular basis(not being NED). You said everything that I have been feeling lately concerning whether or not is it worth it and when do we draw the line. Fortunately for me, the chemo seems to work when I'm on it and doesn't when I'm not, which is not too often. I'm still able to work full time as a landscaper except when on the pump. Right now I'm on my second folfox regimen that was my first chemo 4 years ago. I hated it then and I hate it now. We've ran out of what else to do, I've had them all. Maybe next will be clinical trials or maybe my onc will mix and match the 7 or 8 colon cancer drugs out there. I will continue the insanity as long as I can physically handle the wear and tear that chemo does to our bodies, plus the fact that my family thinks I should be on some type of chemo even if the scans don't show any cancer. I guess I'm a "Chemo Junkie". Thanks again Craig for a very well written piece on the continuous use of chemotherapy when it does not kill the cancer. You nailed it buddy, take care and God Bless, Randy

janderson1964's picture
janderson1964
Posts: 1621
Joined: Oct 2011

Craig thanks for leading me to this link. I decided to respond to this rather than the Big Billy post so it will bump up to the top. It is such a great post that I think it should be readily availble to read for any newcomers that might be interested. As always you seem to be experiencing so many of the same thoughts/emotions that I am experiencing. I think sometimes the decision making procees is one of the most brutal parts of fighting this disease since the "experts" have no clear answers.

You are so right about the price we have to pay for fighting. I keep thinking about all of the surgeries/chemo/scans, blood clots as a result and all of the pills that I am taking to help the side effects. I think I take more medications than my 87 year old father and I am still only 47. I keep thinking that if by some miracle I do beat this one day what other problems will arise or another type of cancer from all of the treatments/scans.

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Yes a great post.
Thanks for bringing it back, I missed it the 1st time.

Longing for the day I can say NED as i'm heading into 2nd yr of this nightmare.

belindahill's picture
belindahill
Posts: 142
Joined: Jan 2011

Hi, what a read, we are just beginning. Thank you for your post.

druidshadow's picture
druidshadow
Posts: 85
Joined: Feb 2012

thank you Craig for that inspirational post, i am not sure i have with will to as long as you have esp. if time being sick out ways the the time i get to enjoy my family.
just my thoughts
john

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