Thursday, July 22, 2010

What Our Bodies Do Behind Our Backs

Roger had the PET scan on Tuesday, and it took much longer than it was supposed to because the computers malfunctioned. He was given the radioactive material at 8:00 am, and then waited for an hour for it to reach maximum scanning density. At 9:00 the tech support discovered that the computers were down. Several problems arose with that scenario, one of which is that the radioactivity starts to degrade after one hour. So, Roger sat in some waiting room for a long time with nothing but People Magazine and Star to read, which he simply could not bring himself to do. The tech support did finally get the computers up and running, but it was one and a half hours past the maximum radioactive density. So, each scan took several minutes longer than it should have. I sat bored to tears in the lobby waiting room, listening to Kenny G do elevator music for a very long time.

On Wednesday the oncologist came into the examining room grinning from ear to ear. We liked that immediately. He often has to deliver very bad news, and we could tell by that smile he was not about to do that. Roger's PET scan was GREAT. There was absolutely no sign of cancer in any of his other organs. I told the doctor that I hoped he wouldn't mind, but I just had to get up and do my happy dance, which I did. So, we just had to deal with the presence of cancer cells in the lymph nodes. Not a good thing, but not Stage 4 cancer. Whew.

Then came the long conversation about how to proceed and the mind-boggling cost of health care in our country. The best medical opinions say that Roger should have chemotherapy because colon cancer recurs 50% of the time within five years. If he were to do the most aggressive therapy, it cuts that risk in half. And, if he were to do that therapy with only Medicare, our out of pocket expense for just the chemo will be $20,000. It's an amazing conversation to have with a doctor and his or her staff. They apprised us of all the ways to cut some of the costs, but it is still a crazy thing to have to think about while you are faced with trying to figure out how to save your own life. Just today I heard that John Boehner said if he were to become Speaker of the House by November's vote, the first thing he would do is repeal the health care bill. Oh really, John? What is your definition of civility?

Roger plans to do the the aggressive chemo treatment. The side effects are pretty intense and overwhelming. What I wonder is this: should it be called a side affect if ABSOLUTELY EVERYONE who takes the treatment gets it? For instance, everyone who takes Leucovorin and Oxaliplatin develops a wild and intense intolerance for cold. You can't put your hands in the refrigerator, walk out into the winter air, step out of the shower on to a cold tile floor, or eat ice cream. (That's just the short list.) If everyone experiences that, that's not a side-effect that is THE EFFECT. Maybe I don't understand what a side-effect is. Aversion to cold may not be the intended effect, but that is the effect. Oh whatever. I hate modern medicine.

Anyway, the alternative (besides doing nothing) is to do an oral medication that has other wacky side effects like causing severe pain and blistering in the palms of your hands and the soles of your feet. It only reduces the recurrence risk by half of the more aggressive treatment. Not likely that Roger plans to choose that one.

This is life at the moment. We're truly ecstatic that we're not dealing with an even worse-case scenario, but we both wish that our bodies gave us more cues and clues about what the hell is going on instead of keeping these secrets from us behind our backs. What kind of evolutionary response is that? Waiting for things to get almost out of hand before there's any clue? STUPID STUPID STUPID.

Roger is recovering quite well from the surgery. He'll be ready for chemo the second week of August. I'm ready too... we're going to kick some ass!

(Photo of squirrel stretched out on our driveway. We find them in this pose quite often. They love all the birdseed. They are happy.)

33 comments:

  1. John B. is a dickhead, but you knew that.

    Interesting rant on side effects -- but yes, what is the technical definition of side effects? Well, I'll tell ya, "Problems that occur when treatment goes beyond the desired effect. Or problems that occur in addition to the desired therapeutic effect." Resource: http://www.medterms.com/script/main/art.asp?articlekey=5489. So it's not the percentage of folks who experience undesired effects. Aren't you glad I told ya?

    I'm with Roger, if it were me I'd go for the most kick-ass version possible. Of course, a month into treatment he may change his mind! But, we want him around for a good long time -- no remissions for our boy!

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  2. Oh, and BTW, what about UC insurance? Was he covered under your policy? Or does that insurance go out the window when medicare kicks in? So confusing.

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  3. I really did think that's probably what "side effects" are, but still. Unintended effects are still the main effects of some drugs. Pretty tricky use of the language.

    My UC policy stopped covering Roger when he became eligible for Medicare. We never thought he'd get sick because he's really been so healthy. Oy. That policy change probably isn't true for all other UC policy coverage, but only for those of us who have the minimum. La la la.

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  4. ((((( roger ))))))
    ((((( robin ))))))

    the no-spread news is GREAT!

    the not-primary, not-intended effects of chemo SUCK. but the potential alternative sucks worse.

    so, roger will be wearing a jacket, hat, and sox in august, even if it's a berzillion degrees. i think he can handle being a little out of mainstream. ;)

    xoxoxo

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  5. Oh, yes, John B. is most definitely a dickhead!!! You guys are so brave and so upbeat and are such an inspiration to me! I'm amazed at the side effects, but I know both you and Roger are going to kick ass with this whole mess. I'm hanging in there with you, holding good thoughts and all the other useless things, but I do send you much love!! We do indeed want both of your around for a very long time -- definitely no remissions!

    Sylvia

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  6. Your good news out weighs the uckie news. Best of luck and I'm thinking about you both.

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  7. Criminently. Well, you guys are strong, so onward...
    As for f*&%#!g Congress members, it's time to cut their free ride for benefits. And that includes people like Dick Cheney, any past presidents, etc. Make them pay co-pays and for their families, like the rest of us do. Bonehead Boehner and his ilk are way too out of touch with the realities of health care, among many other issues.
    Shit, it makes me so mad.

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  8. Very good news indeed, on the lack of spread. I know you're both ecstatic on that.

    There is so much wrong though, from having to sit and listen to endless Kenny G elevator music to the haggling that must go on because we have such shitty health coverage. Unless you're fabulously wealthy. Bev has called this Cancer World, but here in the US of A it takes on a whole new meaning.

    As always, I'll have you both in mind as Roger embarks on his chemo in a couple of weeks. And I'll curse the John Boehners all the while.

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  9. Ouch, think I pulled a muscle doing my own happy dance here. Great news.
    I'm sure you two will do what it takes to get roger back 100%. Chemo sucks, no doubt, but for now,it is the best course. He will beat this.

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  10. Glad to know the squirrel is not dead. He had his eyes open, but still I wasn't sure. Even gladder to hear the news about Roger. Yes, go kick some ass.

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  11. John Boehner with those strange pale blue-grey eyes looks like a slinking cur that will lunge and bite you as soon as you turn your back. My apologies to the slinking cur.

    Great news!!!! Glad you plan to kick some serious ass. Too bad it isn't Boehner's :)

    And about those 'side' effects. Think of it like a drive-in. The doctor skates up and says, "Would you like some blistered palms along with that Chemo?"

    Lame. Yes. I know. Lame. I'm just so happy for you that I'm plum silly!

    Ha! the word identification is "pilism" ! Even the Comments Fairy is giddy!

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  12. Great news that there are no established mets! Good call on the aggressive approach to chemo. If you're going to fight then you fight to win.
    Keeping good thoughts for your long-term success!

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  13. My wife had colon cancer about 10 or 11 years ago (before she was my wife). She had chemo and radiation, and her side effects were really pretty manageable. We were dating at the time, and she was able to actually go out and eat. Not much, but some. And she has been cancer free ever since. So take heart.

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  14. Hugs to you both...Roger has been much on my mind but especially yesterday as I spent 14 hours helping son prepare his house for an attempt to sell it. I swear I heard him laughing at us a few times...

    alan

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  15. That is great news and you two seem to have the right attitude to knock this thing into the past. Unpleasant but it will put it all behind you and the toughest treatment, most likely to succeed is the right one. What irks me is all those who want to limit health care help because how many folks faced with this could simply not afford the best option. It's not right and the country needs to deal with it. Still it is time to rejoice that you can do it and that it is not a worse case scenario.

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  16. I'm always utterly amazed that anyone in the states has to pay for treatment for cancer. How bizarre! When Don was diagnosed, we never saw a bill for anything - not for three difference regimens of chemo - one of which is very expensive - or for the many radiation treatments, or home care and then the week in ICU with 2 nurses just for his care for 24 hours a day. Meanwhile, I have a good friend in the U.S. who ended up in the hole - pretty much forever - paying off a 90K debt incurred to save him from dying of cancer. How can a system expect people to pay for cancer treatments.. even a portion of it. It's just beyond me.
    I think going the extra mile with the more aggressive chemo is a good plan. Yes, there will be some hardships associated with that. I guess I would just caution that, if there is any serious side effect, such as possible heart damage, then I might not take such an aggressive approach. One of Don's chemo regimens caused some serious heart damage - a percentage of people who have that one do suffer permanent heart damage. I think we have to give consideration to long term effects. At one time, doctors just did the chemo hoping it would work. Now, they are usually quite sure it will work, so are looking further ahead to whether you'll suffer much long term stuff. Some things aren't too serious, but some things are (organ damage). The one other thing I would consider in some cases is, if something about the regimen would disqualify you from being eligible for a clinical trial drug later on. Usually, a standard first line drug is fine, but if you get beyond that, that's when you start hitting drugs that will make you ineligible for trial drugs (just something I think everyone should keep in the back of their mind when getting into the whole treatment thing). And yes, as Wayne has mentioned, I think of all of this as visiting Cancer World. When we boarded this space ship, we had no idea that's where we were bound. It's a whole other world than what we're used to, but there are many others making the same voyage.
    One other thing - there are many good drugs to counter side effects such as nausea. Some are expensive, but very good and sometimes useful if you're having more than average problems. Not much need to suffer with side effects too much these days as there are a lot of ways to alleviate them.

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  17. wishing you both lots of good mojo in the upcoming weeks!

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  18. I am glad to hear the good news on the PET scan, and that you are going full-steam ahead on the treatment. Re: medical costs One day the US will get medical coverage like most of the civilized world but until then we can just be grateful for the quality of care that is available.
    Keep dancing my friends!

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  19. Good news and a happy dance here too. DO kick ass, both of you - and beat the wretched disease right back into oblivion where it belongs.

    The stuff that goes along with chemo can be managed for the most part and nausea can be kept to a minimum.

    I've never been able to understand either why oncologists persist in labeling some of the effects of chemo as "side effects". Perhaps they are trying to make light of what we are going through?

    Holding both of you in my thoughts...

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  20. And I've been whining about the cost of Georgie's eye surgery! Thanks for the reminder that there are more difficult things to deal with, and that there are those of us--you two!--who have the courage to deal with them. Congratulations on the clean scan, anyway, and commiserations on the coming weeks of treatment. Thinking of you both, Peter

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  21. I just came across this post today (it was from yesterday?!). Celebratory dance, yes! Kick ass dance--looks like a can can--yes! And kick Boehner's ass dance, I could have danced all night.....

    Second leg of the biathlon is a doozy, I guess. I wish you attitude, and moments of joy, and support and love through the rough spots.

    One of the things that my office mate's wife was told was to hydrate intensively during chemo, to alleviate nausea. She did, and suffered little nausea. It can't hurt to try.

    I take it, it's been hot in your parts? When squirrels sprawl like that, they are trying to cool off. So cute!

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  22. Late to the great news! What a relief.

    More hugs (and WARM thoughts)coming your way!

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  23. Nice squirrel picture. They sure look like cute little creatures, but they can be bad. My mother said that while she went to town, the dogs were locked up so the squirrels threw most of the pears out of the tree.

    I'm so happy that the PET scan came back so well. Yay! Hopefully, the side effects from the aggressive treatment won't affect Roger too much.

    Healthcare cost is ridiculous, but it has been for years and years. Back when I worked for healthcare, I was astonished how quickly a bill could balloon. Your portion will be large. I wonder if they will allow for an interest free monthly payment plan. I remember setting up payment plans of $25. a month (temporarily) on balances of $10,000. as long as the person completed a financial statement and set up payment plans with our facility. It always amazed me that people would send in payments but not contact us to set it up. Some would say, "I'm sending in payments, you can't do anything to me!" Unfortunately, if they didn't verbally (by phone or in person)set up a payplan, the bill would continue through to collection agency. Of course, that gave them bad credit, and the collection agencies called them. I'm glad I no longer work that job.

    Since our "representitives" in government get good healthcare as a matter of course, it doesn't bother a lot of them that so many people are uninsured or underinsured.

    I hope all goes well from here on out!

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  24. Delighted and hugely relieved about the scan results. Less pleased about the chemo. I can't help wondering: where does the $20k go? What's the actual cost of producing and administering the drug? The stink of profiteering and protection of privilege hangs about this.

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  25. "What kind of evolutionary response is that? Waiting for things to get almost out of hand before there's any clue?" That's describing not only our bodies but some of our Senators and Representatives as well!

    I'm glad Roger is opting for the max. I would do exactly the same. I'll be with you in spirit all the way.

    Be sure to take your iPod or a good book no matter how short they say the wait will be. Even if you can't concentrate and really enjoy them, they are far better than the alternatives.

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  26. Great news, although chemo sucks.

    But, ya'll will get through it in the positive way you continue to move through your lives.

    Wishing you both well, always!

    Fuck JB
    and all that are like him ; (

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  27. Keep the faith, my friends.

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  28. I love your kickass spirit and the thought of you doing the happy dance.

    Roger has the best partner to get him through this.
    That would be you, of course.

    Great point about the "side" effects. Spot on!

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  29. You both have been in my thoughts. I'll just keep sending love your way, along with everyone else.

    Sobering to hear your most recent experiences with modern medicine and what bev wrote about health care in Canada compared to the U.S.

    Still, it's good to be in this crowd of happy dancers. There is healing in that.

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  30. Cancer is expensive isn't it. I hate cancer..........

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  31. The good news and the happy dance are the main thing, and they bring joy to all of us. But thanks for using your trials to suggest some important questions--like what happens to sick people who can't scare up twenty thousand dollars?

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  32. Wonderful post, and wonderful news. Still a lot of lifting to do, but certainly buoyed by hope!

    Our health care system, and the flow of money through the system and out of everyone's pockets, is a total disgrace. Had I known this before I went to med school...

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  33. Hi there! I;ve been thinking about you and wondering how treatments etc were going...so very happy to hear that the organs are clear, that your attitude is stalwart and bold, and that you are taking time to see the butterflies! As for the cost of treatment, I think it's ludicrous! I paid $0.00 for a lumpectomy, 6 weeks of daily radiation,and 5 years of prescibed daily medicine worth approx. $10,000, plus bi-annual check ups with the oncologists, assorted blood tests and ultra sounds and mammograms. Zero $$. So I am totally amazed !!! when I hear people saying that a socialized health care system is going to make them kill their grannies and other such ignorant statements that are fueled by the insurance companies who stand to lose the most amount of money.Maybe I misunderstand...perhaps the economic benefits of encouraging a fast food, no exercise, lots of TV nation that ultimately requires lots of medical attention and expensive pharmaceuticals is worth
    bankrupting the lower and middle classes. (and how come every time I visit your blog I end up ranting???)
    Be well and stay strong!Susan

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