Monday, June 16, 2008

Cancer: Big Business

Ok, so I thought that maybe a blog of my own would help me vent things going on in my head, and not monopolize Tami's Blog, not that I wont keep helping her update, but my feelings can tend to be a little "stronger" and I tend to get a little angry about things I see as we have been going thru this journey. So to start of I want to give everyone some food for thought. Is the cure for Cancer a high priority for the people currently in the field treating people like Tami? I compare it to the Oil industry, the fact that oil and what we use it for, all the different things and how important it is to us, and how Oil companies can make such huge profits off of it. The fact that it only makes sense to find an alternate fuel source and that there is enough brilliant people out there, that with the proper funding could surely come up with something better. I mean NASA researches fuel sources for long journeys in space, certainly some of the stuff they have stumbled across might not get me to the next galaxy, but could probably propel my car to the corner store. You hear about all tis stuff in development and even when they do release something a little better, its priced so high us normal people couldn't afford it anyways.

Ok so money keeps oil alive, so what stops us from curing cancer. Is it that elusive? Or do we focus on treatment and not cures. I will use Mayo as my example, I am sure that they have done wonderful things for a good many people. So people may or may not agree with the things I am about to say.

The first thing you notice when you walk into Mayo is the building, what an incredible building, beautiful landscaping and architecture. Surely millions of dollars, possible donated, possible raised, I dunno, I am sure I could research how they afforded such an incredible building. Anyways, walking thru the Gonda Building I find myself wondering is all this needed. who is this impressing? I wonder how this aids and comforts a person facing a battle against Cancer? Dont get me wrong ok, I mean in the treatment and care you want a person to be comfortable and be in a positive environment, but really, look at this picture, would anyone have preferred a simpler design and the extra money put into research? Do a search for "gonda mayo" to see more images.

Again, I am sure I could go hunt for facts and figures and I am sure Mayo puts major cash into research. But then I am reminded about my visit to them. Lets paint the scene, Tami has Cancer, who do we go to? Duh, Mayo, they are the best right? They will give Tami the best care possible. I have good insurance, Mayo accepts that, we are in good hands. Tami went up with her sisters before me, I had spent my vacation on the previous stay in the hospital, if you don't know the story, just look at the early posts on Tami's blog. So before I even get there, they are already telling her stuff they don't know, how long she might live, how long they can give her with this and that. They, Mayo, all mighty Mayo, doesn't even know what kind of Cancer for sure. They aren't positive on a course of Chemo, they make an educated guess. They do limited testing, no more than we got in Bloomington. I ask about a PET Scan, no we know how bad it is, the PET scan wouldn't do us any good. No biopsies of the Liver, they could do a CT/Biopsy, but no, they already know everything they need to know, well except what type of cancer for sure, and how extensive, oh and how to treat it for sure.

Now at this time, we still hold Mayo in high regard, I mean its still Mayo the almighty, and if they tell me this is it, then I bought it, because they have a big shiny building, and all the best toys. Looking back now, from what we know, we have to ask, why no OctreoScan? I mean one of the possibilities was that it was a neuroendocrine type tumor, what is this scan for? Neuroendocrine type tumors. How much time and pain would we have saved had they done this? Prognosis, Tami asked Dr. Benson how long she might have, or how long she could go on Chemo or how long whatever. What did Dr. Benson say? He doesn't know, why? Because he is a human being, he is a Doctor, he isn't god, or a fortune teller, he cant predict how Tami will respond to the drugs, how things will go. Sure, he could have given us guesses, odds, statistics. But he didn't. Mayo, Dr Bible, Dr Gomez here in Bloomington, they all felt like they could see the future, draw a road map for Tami's life. Truth is they cant, and they are so very wrong for trying to do so. I was devastated when I left Mayo, I thought there was a good chance I could be alone Christmas, that I could lose my wife so soon. Someone might say, hey, she made it longer than they said, be happy. I say they shouldn't have been guessing or predicting, they are Doctors, speak of what you know, respect what you dont.

Ok, so have I gotten off track with my Mayo rant, no. Let me tie it together. Half assed (in my opinion) efforts on the part of people like the Doctors we dealt with at Mayo and here in Bloomington make me wonder if they are more concerned about collecting their huge sums of cash for Chemo treatments (Tami's first was right about $25,000). If someone cured Cancer, what would that shiny building be for? The drug companies, all the cancer centers, all the people working in the field, what would they do. Don't get me wrong either, there are a lot of caring people in the cancer treatment field, honest hard working people. Dr Benson and his staff have been incredible so far, but as you go up the ladder, like the oil companies, you have to wonder, are they trying that hard to put themselves out of work?

5 comments:

Anonymous said...

I know someone who has traveled from Toronto to the Mayo clinic and paid out of their own pocket for their advice, and were quite disappointed with them. I think the expectations are too high. But I do agree that their reputation probably puts more donations into their pockets than other research organizations, and yes, when there is money flowing in, the architects do go wild. Pity.

As for cancer research money going all to the right places -- not happening. I remember reading somewhere that the boards of directors of cancer charities (the ones that decide where the money is spent) are from drug companies, so you can imagine what they focus on. The best example is DCA -- a cheap non-patentable chemical that an Alberta university researcher has shown to be effective in shrinking certain tumors in rats. You'd think the cancer society would jump head over heels to fund trials of his research? Nope... the drug companies can't make money on it.
(http://thedcasite.com/index.html)
The other potential life saver, thermal therapy (http://www.thermaltherapy.org/) is also not high on the list of research grants except when it's combined with drugs.
Yes, you have all the reasons to be maddeningly frustrated.

Kristi said...

Norm,

I stumbled across your blog on Tami's and I hope you don't mind me nosing around...it's nice to know what's going on in your head, as I am sure we share similarities in our feelings and frustrations. It's nice to know what you are thinking.

See you guys soon!
Kristi (and the fam)

PS...Korban has a new trick, you have to see it!

Kristi said...

Norm, you are probably sick of hearing from me, but I was checking out Tami's blog since you guys didn't take our calls this weekend, and happened to notice her "flag" wish...I was cruising around on the internet and found the below link, thought you might want to check it out!

dreamfoundation.com

Hope all is well, we love you guys!
Kristi and the fam

Anonymous said...

People who have been touched and helped, paid for the building. No govt funds or anything. All donations. Mayo is also a teaching hospital and yes every cancer is not known or curable. I am going through that now but the care and timing of what they found and updated reseach has saved my life (at least for now). Go to http://www.mayo.edu/ and do research for yourself. Mayo also offered free classes, on on being positive, and that really has belped. Also do not be afraid to ask questions they work for you.

Norm said...

It doesn't really matter how they got the money, its how they used it, if you can admit they actually needed such a fancy building, well then I am not sure about the worlds priorities. I would rather get treatment out of a garage than Mayo's building if I knew that all the money went towards research and finding an actual cure.

And thanks for the info on Mayo, but we found someone that is actually helping Tami, so I dont need to waste my time up in that big shiny building again. She has already surpassed their prognosis.