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Talking About Chapter XIV - "The Cure?" - Things I Wanted You to Know Beforehand...

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

The more I thought about this, the more I thought it probably deserved its own thread, since the book post has played itself out and folks may not read it again and see this. I wanted folks to see this, so they would not be blindsided if the book makes it to print and you come across this chapter.

As I said, this book is not all "fluff and puff" and does explore the hard topics on the cancer subject. I felt this one particularly so. You all know that I'm not completely a "smoke up the tail-pipe" type all the time. I believe in many things, but bringing the hard topics out of the shadows and into the light is important and I felt like I had the opportunity to explore this topic and its contents with my book, if by chance it makes it out to the public for consumption.

This is not an excerpt - just me talking about the chapter - it's a good one and I want to save at least one good one:)

TALKING ABOUT Chapter XIV - "The Cure?"

This book was not only about the cancer journey, but also about me searching for answers to the tough cancer questions that I might not post about here on the board, because I did not want to hurt anyone’s feelings or step on their hopes.

As I approach the 7.5 year mark of my own journey, I have many more questions than I have answers.

To that end, I decided to write a chapter that I wanted to talk about here on the board, but just could not pull the trigger to do so. The book allowed me the freedom to pursue my own quest in trying to find out the answer of Why?

“The Cure?” chapter was the end result. You will notice the question mark at the end of the word - cure. I’ve heard so many desperate cries on this board of “the cure is right around the corner” or “when will the cure be here?”

The pain and agony in those voices have haunted me as time has gone by. It has had me thinking more than once about this topic and so I finally figured I had my opportunity to explore this topic and try and seek answers.

Although, all I really found was that I had even more questions than answers – and said so in the chapter.

In the chapter, I raise some good points on why I feel that ‘The Cure’ is not going to come for us – at least, not in the way that we are expecting it too. I believe the future for cancer treatment lies in targeted therapies and improved surgical techniques..

When we think ‘cure’, we are thinking the “blanket effect.” Meaning, that the cure will cure all – all of a certain cancer – and all for ALL cancers.

The term ‘cure’ carries with it the connotation that one size will fit all. But, how can that be? I’m not even talking the financial implications for the cure – I’m just talking about the scientific approach to the cure.

Without giving it all away, I will say that if for no other reason than the same phrase that we bandy around here all day & night – “We All React Differently.”

I may not be the sharpest tool in the shed, but I think I raise some other good points along with this one, on why we will be waiting a long time.

But, if we stumble onto a good therapy that can help some of us in each cancer category, then that would be a good thing that could come of out of the research and testing and why we must continue to try.

Enough about that.

I actually did some research for this chapter, because the other thing that has been bothering me was how it is decided WHICH CANCERS get the majority of the federal booty each year?

Why is one cancer allocated more money than another one? And why is that decision made?

The answer I found made me mad.

Let me preface the next paragraphs with this caveat.

I am for all people with any kind of cancer. I don’t discriminate – if you or your loved one has got any kind of cancer, I’m for you. Plain and simple – end of story.

In no way, is this intended to hurt you or anyone that you know that has any type of cancer. My question was just to know Why?

I found some statistics from the federal government (For 2010), so this is very recent data. It was the source of spending data from the NCI Office of Budget and Finance.

And what I discovered was, there is a huge disparity between the money that is allocated between all of the cancers. And as I said, I was a little upset about it – and I’ll tell you why.

For 2010, the breast cancer group received 631.2 million dollars in federally allocated money – which does not count the private contributions.

For 2010, the colorectal cancer group received 270.4 million dollars in federally allocated money – which does not count the private contributions.

Now, I may be from the old-school, but back when they taught mathematics, if I can still remember how to add and subtract, I see that the difference between the two, amounts to the astronomical sum of 361 million EXTRA allocated in favor of breast cancer.

That’s about 60% more funding for breast cancer versus colorectal cancer – Why?

Lung cancer, which is the #1 killer in the U.S. and the world, received 281.9 million.

However, you slice it up, that’s way over double the amount. And these are just what the federal govt and its associated agencies have designated for distribution.

So, I’m back to my question of Why?

The ‘Why’ that I’m looking for is why is the #1 cancer (Lung) and the #2 cancer (Colorectal) is so disproportionately funded than the #3 cancer (Breast)?

Why?

Breast cancer is comparable to Colorectal cancer in the number of diagnosis and the number of mortalities. Some men do get breast cancer, but the percentage is very low.

However, Colorectal cancer affects an equal number of men and women in both the number of cases diagnosed and the mortality rate. It is an equal-opportunity destroyer and is why it ranks as the # 2 killer cancer in the U.S. and the world – behind only lung cancer.

So, why is Colorectal cancer receiving 361 million LESS for our cause?

Why?

I just want to know Why – and What I can do to find a way to get a more even dispersement and awareness for our team.

If we’re talking about the #1 or #2 cancers in the U.S. and the world, the budget for breast cancer #3 should not be double that of the #1 and #2 killing cancers in the U.S. and the world.

Am I missing something?

Now, we all know that colorectal cancer is “not sexy” for all of the obvious reasons. But, why is our cancer out of the limelight and breast cancer is always in the spotlight?

I don’t see any professional sport teams sporting “blue” accessories for 1 game, much less a whole month of games in the National Football League. And not just 1 sports team, but all 32 of them. Instead, they are adorned in pink.

And Major League Baseball was also sporting the pink colors during the playoffs and World Series.

I don’t see any national races for the “blue team”, like we see for the pink squad.

I don’t see any corporate sponsorship lined up behind us promoting awareness for the #2 killing cancer in the world.

Why?

In the chapter, I credit the “Pink Army” for their cause, because they’ve got their act wired tight over there. They are a marketing machine over there. They have the largest federal allocation by a landslide and a half. They lead the way with private funding as well.

They’ve got the Susan G. Kohmen race every year in cities all over the U.S. I believe I saw where there were 262 national races for breast cancer awareness for 2011.

They’ve got the National Football League wearing pink accessories for 4-games every October to bring awareness to their cause. And they are backed by the heaviest corporate sponsorship hitters in the country.

I’m good with all of that. Again, I’m not speaking against ANY cancer, that’s not my point. I just want to know why the #3 cancer is so disproportionately funded than our cancer, which weighs in as the #2 cancer?

Why?

And what can I do about it?

How can I help us get our name out in the national spotlight and bring awareness to colorectal cancer, so that we can receive an equal amount of funding from the govt. each year, for a cancer that equally affects both men and women alike?

What can we do as a collective group to bring about a change in perception of our disease and help promote awareness on more of a national stage?

What and How?

I think this is one of my favorite chapters, because I got to wear a different hat with this writing. It actually sounds sort of intelligent – almost like I didn’t write it, LOL!

I don’t have answers in this chapter, but I do raise several interesting points on the ‘cure’ in general and the other issue I was pursuing on govt allocation of research funds for the various cancers.

You can hate me now, rather than later, but part of this book was the ‘journey of cancer’ and I’ve got a lot of questions and concerns as I approach the midpoint of my 7th year of this stuff.

In the chapter, I offered to help Sharon Osborne’s organization or any other organization where I can bring our cancer out of the shadows – and into light.

I’m hoping that the book will get us a platform where I can use my southern charm to bring this fight to national attention if I can get in a position to be face-to-face with someone who can help our cause.

I’m feeling a transformation taking place inside me as I want to devote the rest of my days to fighting our cancer and giving it the sort of recognition it deserves.

I got to play the role of investigator reporter in this chapter and it was rewarding and comes across in a good way – because that’s the way I meant it. I’m only trying to stand up for all of us here.

I know colon and rectal cancer is not sexy, but I didn’t design us. It’s merely a part of who we are and I can’t change that fact.

A lot of times, I have hesitated to write on the tough themes of cancer. But, I’ve found that by doing so, I drag the hard topic out of the shadows – and into the light, so that we can see it clearly and be less apprehensive about what we are looking at.

Many people have told me in the past that they were glad that I took a stand and had the initiative to stand up and talk about it. All of you that know me, know that I’m not afraid to draw the hard line and take a stand.

…and I never will be.

Annabelle41415's picture
Annabelle41415
Posts: 6652
Joined: Feb 2009

You do bring a lot of issues to the forefront - especially the funding. A lot of it though brings to mind that the squeaky wheel always gets the oil. Saying that, I'm sure that the breast cancer research is and probably was organized by women where this issue would be personal and clear and dear to their heart as, like you said, men do get it, but few. Also, as you mentioned, colorectal cancer can be a very humbling cancer. When you thought you had modesty before having this cancer - that went all out the window the day they stuck their finger up your rear and poked and prodded every inch of you from every angle you never even knew you had. People don't like to bring up such humility because even though you have no modesty left, you would like to think that you have at least some left so it goes unmentioned in detail, or all the pretty little graphics are left out of the conversation. You go for the gusto kiddo and tell it all like it is and how you feel - that is the only way a book can truly be about cancer.

Hugs! Kim

buckeye2
Posts: 428
Joined: Jul 2011

Craig, If you are looking for a teammate in your fight, I'm not doing a thing. Lisa

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

Hey Craig,
Another great read. I have had all these same thoughts and often wondered what I could or should be doing to bring awareness and funding to crc. I just recently had a conversation with a girlfriend of mine and she believes that the lack of awareness is due to the shame associated with crc. My response: "WHAT?" "WHAT ARE YOU TALKING ABOUT?" "WHAT SHAME?" "YOUR KIDDING,RIGHT?" I couldn't understand this but yet I think she has a point. Once upon a time, breast cancer was never talked about because of the shame associated with it and now look how far it has come.CRC deserves the same recognition and funding,as do all cancers. If there is anything I can do to help you bring recognition to our cancer, let me know, I'm sincerely here for you and the cause.
Karen

janie1
Posts: 753
Joined: Apr 2011

Go for it. I just sent an email to my congressman (surgeon, by trade).
I've read that, too, about new and improved targeted therapies and upgraded surgery techniques as the way to treat in the future. Well I'm a little short on time, and I'm hoping the researchers and venture capitalists are hungry, motivated, and not lazy (and F$uk the bureaucracy, too), because I am still hanging on to something darm-n close to the "cure" concept. Keep pressing, my favorite Texan.

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Craig, My sister had breast cancer. I know many who did. BUT, i am so with you on this. I have been bitching the whole breast cancer awareness month. I want them to cure it, however, i feel like the kid in the back of the class, Jumping up and down yelling yoohoo, i am here, can't you see me???? Can't you see US?
Federal funding should be equitable. end of story.
Whatever i can do to help, let me know i will be happy to help.
Love you, my friend,
Judy

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

Yes, I remember you saying that your sister had breast cancer. I know a couple of other lady friends here, who have been through or know someone as well.

That's one of the reasons I was hesitant to talk about it before. I just did not want anyone to think I was against any type of cancer, so I wanted people to understand my position and hear it from me first.

Because, I've built up a good relationship with you guys and you have come to know me, I felt comfortable enough to bring the subject up and hope I wouldn't get clobbered.

I like to look in the shadows with cancer and continue to explore the boundaries of the hard topics with cancer. I remain hopeful that someone will take a chance on me and put me in front of a camera or a microphone.

By the time, I lay the "southern charm" on 'em - they won't know what hit 'em - until long after I'm gone:)

LOL!

Thanks for your continued support, love and friendship, Judy! It does mean very much to me.

-Craig

tanstaafl's picture
tanstaafl
Posts: 1296
Joined: Oct 2010

My view is that we must save ourselves. We will wait until the 12th of never if we only plead. We must adopt and adapt relatively cheap, nontoxic things we already have - special foods and herbs, nutrient supplements, generic drugs.

The countries are broke, the whole system is corrupt, the money flows toward power and favorites, not merit or equitable allotment. Centralized insurance makes making (y)our own choices more difficult, they already have (y)our money. Our doctors, some well intentioned, some co-opted out, haven't the time, resources, training or bent of mind to unravel complex individual opportunities. We have had to execute, one step at a time, as many steps as possible.

"substance wise" I think we already have 95% of what we need chemically (foods, plant and mushroom extracts, nutrient supplements) to handle stage II, III, Iva and many IVb. What's needed are knowledge, cheap diagnostic tests, mostly already available, plus more biomarkers upfront between initial diagnosis and surgery. Like cimetidine, many cheap things we just don't about, yet. Live tumor cell testing can be informative even with expensive biologicals to guide generic drugs and nutrient choices - the success of single target drugs and combos can also help choose generics and nutrients that modulate similar targets.

The time to start is day #1 for new patients, and to find doctors with ability and long term commitment to more plain medications, with advanced knowledge. We have to take charge, educate ourselves as much as possible, to spend carefully from the start with informed intelligence, need to create our own anonymized public records and cooperate enough to find ways forward. We're doing some of that here.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

Just think of how those with pancreatic cancer or even worse, those with very rare cancers must feel. They get Mr Jack $hit...
The squeaky tumor gets the funding, PLUS since so many people have breast, colon, or lung cancer they get the funding which in turn helps the pharmaceutical industry which in turns pays the lobbyists who buy the congressmen and congresswomen to make sure the money is not divided fairly. And that's the way the system (dys)functions...

Farrah Fawcett's cancer was overshadowed by Michael Jackson's drug addiction, and just how many times can we see Katie Couric's Colon?

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

Pancreatic cancer had more funding than colorectal cancer did. The numbers that are diagnosed are not as high as the top 3, but the mortality rate is very high.

Past #4, the distribution gets substantially less for the other cancers as well. So, I agree with you that if you had one of the other cancers, that the funding is inadequate at best.

Of course, I bring up the point in the chapter on what would be an equitable system? Would we look at it by the numbers that are diagnosed versus another cancer that had lesser numbers?

And I don't have the answer on how things should work, though I'm interested. Still, the fact remains that our cancer weighs in at #2 for a good reason. We get alot of people diagnosed and we lose alot of our folks to the disease. That's why we're in the #2 slot.

I think the numbers are skewed, but I do understand that anything in this world is driven by money and the lobbyists who promote that cause.

I want to get us back on the radar though...maybe we can give Katie C. a rest and show 'em my back side. After all, wouldn't be the first time, I've dropped my pants and showed my *** - either physically or figuratively:)

LOL!

Actually, I dropped 'em in front of my new colorectal surgeon and his PA yesterday at lunch - I've got a surgery scheduled for 12-30-11 to roto-root some of the inside plumbing:)

It's good to see you, Phil. I've been meaning to catch up but have been on the medical and dental treadmill trying to patch myself back together to go another year:) I'm glad that things are going well for you and thanks so much for stopping by and talking. I miss that.

Take care, bud!

-Craig

eibod
Posts: 160
Joined: Mar 2011

Hi Craig, this was an interesting and informative read. I truly hope your book gets some
attention. Sorry to hear you are having surgery tomorrow. Hope all goes well.
Take care, Brenda

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

The surgery is actually 30-days away - on the 30th of December:)

I've had my brain MRI'd - that came back clear with no masses or anything unusual.

I've been busy setting up appointments to get a 'scope done a week before the surgery.

And over the holidays, I was stricken with terrible tooth pain that nixed the holiday and the w/end that followed.

So, I've been in to see them this past Monday....going back today for more work....and right before the scope and the surgery, to get more done. Starting right away in 2012, I'll be getting more work done to get me back up to par.....chemo prevented me from doing dental work and the scopes and surgery had to be delayed from chemo as well.

It's gonna' be a whirlwind as the year winds down to an end:)

It takes alot of "mechanics" to keep Team Sundance on the road to health, LOL!

Nice to see you and thank you for your post - I'm glad you liked it.

-Craig

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

YOU are awesome.... well said.. Petrina

laurettas
Posts: 372
Joined: May 2011

Craig, if you want to see another major imbalance in funding, look at Aids research vs cancer research per death from each. It is astounding the difference.

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