Category Archives: chondrosarcoma

A rant (please ignore if you don’t want to be offended) (includes swearing) (as usual)

I’ve been told lately that I have a tendency to be harsh and blunt and should be kinder and more gentle. Apparently some people have been offended. I’m contemplating whether the appropriate response is “fuck ’em” or whether I should try to be more … well, more filtered. I’ve never had much of a filter, and of late my filter has gotten perhaps a little too porous.

Losing weight–slowly, painfully, one ounce at a time–seems to have triggered my inner curmudgeon. I hear certain phrases and they trigger an instant internal response. It’s like pressing a button. “I need to go on a diet” or “I should go on a diet” triggers “no, you need to change your life, because what you’re doing now is making you fat and a diet is temporary and you’ll just get fat again when you stop ‘dieting’.” “How did you lose all that weight?” triggers “Move more, eat less.” and if I actually say that, then people say “I want it to be easier than that” and I want to snap. Losing this weight has been hard, and I’ve accumulated opinions about what it takes, and really, I’m pretty sure what worked for me would work for anyone, if you stop making excuses and decide you actually will do it (because that decision is the most crucial step), not just make excuses.

I’m not sure why my weight loss seems to anger other people. My working theory is that I’m taking away a lot of their excuses. After all, I’m sixty. I’ve had cancer. I’m female. I was really overweight. All of that was fine, and no one ever criticized me for the weight–other than the orthopedist who told me I was heading for double knee replacements by sixty (four years ago). Even the doctor who referred me to the nutritionist–the one who told me I’d “be hungry sometimes and that’s just fine”–didn’t actually criticize me. She just wrote “obesity” in the list of medical problems I was facing. But now that I’ve lost almost all the weight I set out to lose (six pounds to go, as of this morning), apparently people are worried that I might have become anorexic (and my filterless brain says “would you like to see my food diaries? no? then please be quiet.“).

I want to snap when I hear excuses that people think are reasons. I want to record their excuses and play them back to them, over and over and over (and then one or two more times), until they realize they are excuses. I had a reason I couldn’t run well, why it hurt to walk, and I had that reason for maybe ten years, and now that I don’t have bone cancer (chondrosarcoma, left distal femur, now considered cured) any more, I’ve spent nine years (nine fucking years, folks) losing weight, getting faster, working on my health–and you want an easy answer and to make excuses? Yeah. You can make excuses all you want, but if you took the energy you put into your excuses and put it into changing your life… well, in a year, you’d be a little further down that path you say you want to follow.

“I wish I could run faster but my knees hurt” is an excuse when it comes out of the mouth of someone who is fifty pounds overweight. My snappish curmudgeonly brain wants to say “Lose weight, try Couch-to-Five-K, and maybe you’ll run faster and I’m pretty sure your knees will hurt less. It worked for me. Or you could try swimming. Something. More exercise than trotting around the ring with your dog.” I try hard to shut up but don’t push me, folks. Really. Following that excuse with other ones about how you don’t have the time or energy or whatever? You’re making excuses. Stop lying to yourself. It’s not just that you’re lying to me, it’s that you’re lying to yourself. Curmudgeon says: “You don’t really want to get more fit–if you really wanted to do it, you’d be doing it, not making excuses.

I don’t know anyone whose dog is competing at the upper levels of agility who has a fat dog. We all know how to keep our dogs at a healthy weight. Many people I know have treadmills for their dogs, to keep the dog fit. We all know what it takes to have a fit, lean dog–and my first thought when someone with a fit, lean dog says “I wish I could lose weight” is that “you should manage your own diet and exercise as carefully as you manage your dog’s diet and exercise. That would work.

Losing weight, getting more fit: summarizing my food and exercise obsessions

I was asked by a new agility friend a few days ago about how I managed to lose weight and get more fit when confronted by the reality of trying to run a big fast dog when I was a slow out-of-shape handler. I wrote a long email summarizing what I’d done; this post is an adaptation of that email, for the benefit of anyone who is bored with the reality of being out of shape.

I get asked what motivated me to get into shape and the short answer I give is that I struggled with running Rush. The deeper answer is both simpler and not so simple. Somewhere around there I saw my doctor about my “bilateral knee pain”. I was of course worried that my chondrosarcoma was back; my doctor was blunter. “It’s not cancer; it’s your weight. You’re going to need double knee replacements in a few years. Your menisci are thinning.” I went home and did research; I had a bone graft in the left knee as part of the chondrosarcoma surgery. It’s not really clear how successful a knee replacement would be, without good bone to drill into for the hardware.

So: tell me I may not be able to walk normally in a few years if I don’t lose weight, and guess what? I can lose weight.

It’s been more than three years since then. It’s taken three years–not a few months–to lose about fifty pounds. I’ve approached the project with every bit of my scientific brain trying to influence my eating patterns. I’ve read about what influences eating behaviors and exercise behaviors. I’ve read about getting fit “over fifty” (I’m turning sixty next week!). I’ve tapped into my desire to be competitive. I’ve done everything I can to get there, slowly and steadily. It’s been a lot slower than I’d like, but it beats the alternative.

And at this point my knees don’t hurt, most days.

That’s the summary of why. I also feel the need to mention that I stopped being angry at myself for gaining weight in the first place. It really didn’t help matters, and there was no point. I mean, who cares why I gained weight? I suppose it would matter if I had thyroid problems, but I don’t.

I’ve written before about what I’ve done: two posts that come to mind are two posts from late in 2014.

These two are a pair: the first is about goals, and the second is about measurable behaviors that would lead to those goals. Keep in mind that fundamental rule of training anything with a brainstem (as explained by Karen Pryor in Dont Shoot the Dog): you can’t reward results, you can only reward behaviors.

First.
Second.

This one is recent and discusses why I’m going to Weight Watchers right now.

This one is about the changes Rush has wrought for me.

This one is an early report, when I’d lost about twenty pounds. I’d forgotten that bit about “sometimes you’ll be hungry and oh well, just power through it.” Excellent advice.

Another report from around the same time: people were stopping me at trials to ask what I was doing to lose weight. (Literally: they’d sidle up to me and whisper “how are you losing the weight?” because it’s such a forbidden topic that no one will discuss it publicly. At this point, I think people have figured out that I’ve lost a lot and it’s okay to ask about it. But I still avoid talking about it, because it’s BORING to most people. You’ll notice I’m happy to obsess, however, to those who are interested.)

And another early report, talking about some of the research I’ve done on weight loss theory.

Calorie/food tracking apps:
I’ve used the Fitbit site, MyFitnessPal.com, SparkPeople.com, and the Weight Watchers app. None of them is really great, but they’re all okay. Right now I’m using Weight Watchers because I’m going to meetings as a way of help myself not eat MACH cake at agility trials–I go to a noon Monday meeting and the public shaming has helped. I hate the meetings (YMMV) but it’s one more habit, along with tracking what I eat and how much I exercise. I think MyFitnessPal has the best food database, and SparkPeople sends the best daily motivational email.

Exercise tracking:
I use a Fitbit and have for almost three years. My daily goals are 45 active minutes and 12000 steps…. I also have a runner’s watch (Garmin FR110) because I’ve accidentally become a runner, again. (I was a runner in my 20s. Stopped when I had kids. Hated it when my knees were bad… Discovered the Hoka One One shoes and now enjoy running again. The shoes are no good for agility, so now I have shoes for running, shoes for trail running, and shoes for agility. I spend money on shoes.) I also keep a paper logbook on my desk with a brief summary of my day, exercise/weight/agility training info. It’s maybe a sentence a day but it’s easy to review and I like that.

Books I have found helpful (these are live links, if you decide to use them, I get a tiny commission, as an Amazon associate.):

Karen Pryor Don’t Shoot the Dog (about creating rewardable behaviors and then rewarding them–works for people too) (very helpful in explaining to my husband, family, and friends exactly what I need from them–things like: “please buy me nice soap for my birthday, not chocolate.” “Please go for a bike ride with me instead of inviting me to lunch.”)
Link: Don’t Shoot the Dog!: The New Art of Teaching and Training

Switch by Dan Heath — this is a book about creating change in businesses by approaching things from different angles. It’s pretty geeky/business-oriented, but it helped me think about behaviors instead of abstractions.
link: Switch: How to Change Things When Change Is Hard

Better than Before: Mastering Habits by Gretchen Rubin (she also wrote a book called The Happiness Project, to which she refers often in this book–not nearly as specific a book)
Since I’ve found a lot of getting fit/losing weight has to do with creating new habits (since the old ones really haven’t worked for me), the idea of deliberately setting out to create better habits is helpful. Some of the ideas in this book are useful, others, not so much.
Link: Better Than Before: Mastering the Habits of Our Everyday Lives

Sugar Salt Fat is about the food industry and is more than a little horrifying. If you need persuading that processed food is not healthy food, this book will do it for you.
Link: Salt Sugar Fat: How the Food Giants Hooked Us

Secrets from the Eating Lab is about the subtle ways you can influence your own food-related behavior to make it easier to lose weight. Stuff like putting the food away, using small plates and bowls, etc. I’ve found a lot of it very helpful.
Link: Secrets from the Eating Lab: The Science of Weight Loss, the Myth of Willpower, and Why You Should Never Diet Again

Still reading? If so, I’ll mention that I’ve started making absolute statements about myself, even if sometimes they’re more about goals than 100% true:
“I never eat processed food.”
“I avoid refined sugar (and artificial sweeteners).” (Both things wreak havoc on my insulin metabolism and create mood and sugar swings that I have trouble managing.)
“I run about 15 miles a week.”
“I walk my dogs three times a day.”
“I always record what I eat.”
“I bring my lunch to trials so I don’t eat the junk from the concession stand.”
“Yes, sometimes I’m hungry. It’s not a big deal.”
“I am losing weight because I enjoy every single bite I eat.” (In other words, I don’t just eat garbage food just because it’s there.)
“I do my hard workout on Wednesdays, when they bar car traffic in the park.”

By making these absolute statements, I a) reinforce the habit, b) make it harder to duck the task, c) present myself as the person I want to be TO MYSELF, instead of tearing myself down.

As for dieting philosophy and what to eat, I know people who are losing weight with paleo, with weight watchers, with Mediterranean diet, etc. I really think it’s key to establish what you’re eating now, what you really enjoy eating–and then reduce the amount about 20% and increase your activity about 20%. If you have any really obvious unhealthy habits, like soda or an evening slice of cake, rationing them is easier than eliminating them. I’m very fond of ice cream, for example. So these days, I can have my ice cream if I bike to the ice cream shop and bike home. French Fries? I can have seven, once or twice a month. Seven turns out to be a real pleasure. It’s enough to enjoy them but not so much I feel disappointed in myself later. One thing I really like a lot about Weight Watchers is the encouragement (through their point-counting system) to eat more fruits and vegetables. That’s helpful for me.

You can tell I’ve obsessed about this a lot. Surprisingly, there’s very little useful research out there, but I’ve found some of it very useful. All the research seems to boil down to: eat less, move more, don’t eat nutritionally altered foods (i.e., foods where a portion of the food has been refined away, such as white rice instead of brown rice, white flour instead of whole wheat, juice instead of whole fruit, etc.). Oh yes, and don’t mess with your sugar metabolism by eating refined sugar or using artificial sweeteners (yes, artificial sweeteners cause insulin to be released).

Going public… (we all have our closets)

My New Year’s resolution this year boils down to “become the handler Rush deserves.” Alternatively, you could think of it as “lose weight, get more fit, pay more attention to my handling and stop being so sloppy.” Or just “lose the fucking weight, damn it.”

When I got Elly (nine years ago!), I thought I was getting a couch-potato, non-shedding, companion dog who would enjoy walks with me. Slow walks, because I had a bad knee. Arthritis, the doctor said. Um, not so much. Elly was an energetic, oh-my-god-teach-me-something-else ball of poodle fire. Two walks a day, and I lost about twenty-five pounds just trying to keep up with her. (I’m not sure how much; I didn’t weigh myself for about five years in there. I just know my doctor was surprised.)

Oh yeah, and she made me teach her agility, too, which meant that I finally made the decision to see a sports medicine doctor, who did an x-ray and then an MRI, and then quickly referred me to an orthopedic oncologist to get my chondrosarcoma removed. Then two years of knee rehab (with another surgery to get my mending plate removed) and I was better than before.

And with a new resolve to lose weight. I lost nineteen more pounds, got stuck, got discouraged, saw a psychologist (“try to relax and be less stressed”–that didn’t work, as far as weight loss went, I promptly put most of the weight back on). Let it go for a while.

Then… Rush. The devil dog who yells at me when I’m too slow, who makes me work my hardest just to end up twenty feet behind.

So… another shot at losing weight. Saw a nutritionist this time. The nutritionist, besides giving me good advice about what to eat, told me “yes, sometimes you will be hungry and you just have to power through it.” After years of being told “if you eat the right things, you shouldn’t be hungry,” this was refreshing. And it’s helped. I am once again down … nineteen pounds, which makes me the lightest I’ve been since I got Elly.

And which means I only have forty or so more pounds to lose.

And I’ve been stuck here for about two months, inching down about a milligram at a time (note the cognitive dissonance of “inching down” and “milligram” in the same sentence–but no one says “millimetering down”). I’m using my Fitbit fanatically; I try to record everything I eat, but the holidays (Thanksgiving, Christmas, New Years, our 29th anniversary) were hellish. Too many cookies, cakes, occasions. Not to mention the nut brittle recipe in Maude Dickinson’s cookbook. (Awesome, by the way. Just wait until we get it republished.)

Cue the devil dog. Rush is so fast! He’s so determined to do his best. How can I let him down by not losing the weight and giving it my best effort to be the handler he deserves? I’m training him to be the best agility dog out there; isn’t it only fair to try to be the best handler?

I hate admitting to the world that I have a problem with food. The funny thing is: it’s got to be obvious to everyone. I mean… people aren’t blind.

Moonstones Elinor Oct. 1, 2003 to September 19, 2012

Elly shows off her ability to fly (photo by Joe Camp)

My Elly died yesterday. I don’t know which of her many physical problems killed her. I’d love to be able to say she was cheerful and full of her characteristic joie de vivre right to the last, but in fact, she wasn’t. Yesterday morning, she woke up vomiting, everything she’d eaten the day before, completely undigested. Her gums were raw and bloody again, and she stood and looked despairingly at her food when I offered her some. When she lay down, she hunched into herself in pain. And we were out of drugs to give her. The prednisone worked for a few days, but when I got to the vet, despite the healthy appetite she’d had on the pred, she’d lost another pound and a half.

None of the possibilities were good, and we made the decision to euthanize her. She’d survived so much, and always so cheerfully, but the dog I saw yesterday was not the dog she’d been. I didn’t struggle with the decision at all, and Paige completely agreed with me.

I first met Elly in the kitchen of her breeder, Kim Koopman (Moonstone Poodles), where she came over and snuggled and chewed on my hands, and wagged her tail, and in general was about the most lovable cream-colored poodle puppy you’ve ever met. I fell for her hard, immediately.

She came home with me a month later, at age 5 months (the delay caused by a long-planned trip), and immediately starting making life both excellent and impossible. She loved to snuggle and it took her only a week to persuade Jay that she belonged on the bed, stretched out next to him, her head on his shoulder. But she chewed everything, she wouldn’t listen, she was distracted by everything. (It didn’t help that I had no real clue how to train a puppy.)

If I didn’t keep her mind active, she made up mischief. I took training class after training class with her, all offered at the Bellevue Humane Society and using the latest idea in training: clicker training/reward-based training. Elly adored clicker training. She loved the challenge of trying to figure out what I wanted. I found I loved training that way. By July, when Jay left to bicycle across the country, being gone for 28 days, I was desperately looking for more things to teach her.

We tried agility. I was lucky enough to stumble into private lessons with Pritamo Kentala, and she gave Elly and me an excellent introduction to agility. Elly loved it, and finally she had enough to keep her brain busy and focused. I loved that there was always something new to train.

Interspersed with training for agility, there were problems. She had a sore shoulder; she developed inflammatory bowel disease (and spent two visits at the vet in intensive care recovering from her episodes before we got it under control). I controlled the IBD with diet, mostly, and the occasional metronidazole prescription. We did x-rays after a particularly bad patch of limping; she had hip dysplasia, and oh-by-the-way, that mole that was biopsied at the same time was a slow-growing skin hemangiosarcoma.

She was four and a half then. The stats say that a dog with skin hemangiosarcoma has about a 50-to-70 percent chance of surviving a year.

At seven, she had an episode of hemorrhagic gastroenteritis. I went to the vet sure she’d never come home. There was blood everywhere and she was so sick. In fact, she came home the next day, happy and cheerful. (In fact, she was cheerful when she arrived at the vet that day, sick as she was. She greeted everyone at the vet as if they were her best friend, usually. Not yesterday. Yesterday she just lay on the couch and thumped her tail gently.)

We were not particularly successful with agility. Her injuries (caused by her poor structure) and her illnesses meant that we took long breaks for healing. In the end, she had her Open titles in AKC (OJP, OAP, OFP), her Novice Versatility and her Regular Elite in NADAC, and her CL-1 and Level 2 Standard in CPE. She retired herself from agility about a year ago, taking the first obstacle and then walking tiredly to her leash. She went to a few trials after that, where she greeted her human friends happily and enthusiastically, and persuaded them all to massage her shoulders. (She could persuade perfect strangers to massage her shoulders. I timed her once: less than ten seconds for a guy she met out at the Delta.)

Elly made me love agility. When she was focused, she was so much fun to run! We Q’d and took first on our very first run in our very first trial. She was just two. It was months before she Q’d again; Elly was a master of intermittent rewards. Later, when I fell and hurt my knee and it just wasn’t healing, the agility community encouraged me to see a sports medicine specialist, who took my pain seriously (after years of being told “some arthritis is normal at your age”). It was chondrosarcoma, and it was caught early enough that the surgery to remove the bone cancer was completely successful.

Elly may have saved my life; sadly, I couldn’t save hers. I will miss her deeply.

A comment on my chondrosarcoma

When I was diagnosed with probable chondrosarcoma just over five years ago, I madly scanned the internet looking for more information, stories from “survivors”, details of rehab, anything I could find. There was then, and continues to be, pretty much nothing about chondrosarcoma on the internet. It’s a very rare bone cancer (about 2900 adult bone cancers are diagnosed each year in the US, with about 3/5ths of them in men–and chondrosarcoma represents about 1/3rd of those bone cancers, more or less:link here). The only treatment is surgery (the ACS notes that “most cases do not require amputation”). Five year survival is about 80%, although my surgeon told me that all of his patients are cured, an attitude I quite liked then and continue to like now. I think a lot of the survival rate depends on the age of the patient, as I was relatively young, relatively healthy, and my cancer was caught relatively early.

As chondrosarcomas go, I was pretty lucky. It was caught early enough that it could be treated without amputation, just a removal and a bone graft. A plate was used to stabilize the weak bone and I had it removed a year and a half after my surgery. I was determined to do agility at the same pace after the surgery as before the surgery, and to that end, I pursued rehabilitation ruthlessly. I was fortunate to find several physical therapists who believed that running reasonably fast was a reasonable goal. It helped that my surgeon took the time to figure out how to do minimal muscle damage, although I have realized lately that there are still a few things that I’m working around.

This is the part where I thank Elly, my oldest standard poodle, for her role in catching my chondrosarcoma early. When I fell while doing agility–a dog sport to which Elly introduced me and which I immediately adored–and the pain in my knee just didn’t get better, even after weeks of babying it, I didn’t just let it go with the “arthritis” diagnosis of my primary doctor; I went and saw a sports medicine specialist (someone who had fixed the knees of another agility competitor), who did an x-ray and sent me for an MRI. He called me as I was driving home from the MRI to tell me I probably had bone cancer (not something you should tell someone who is driving, but I survived that) and that I had an appointment with the orthopedic oncologist surgeon the next week. Two weeks after that, I had the surgery. Thank you, Elly, and thanks to the entire agility community for helping make my recovery successful.

A NADAC weekend and good news from the oncologist

Dancer and Elly and I spent the weekend in Lynden, WA (near the Canadian border) just soaking up the particular atmosphere that is NADAC agility. Dancer just lights up when we get to an agility trial, and this weekend was more brilliant than ever.

Friday night was Regular and Hoopers. Regular is the basic kind of agility with all the obstacles (although NADAC doesn’t have the teeter). Both girls had fast runs but missed contacts. In Hoopers, though, they really shined! Hoopers is a strategy and handling game where the handler has to design a course through a series of handling tests, and complete it within a limited period of time. Dancer took first in her class (20+ dogs) with the fastest time of all the dogs in the entire Hoopers group, 25.98 seconds. Elly was almost as fast, at 27.19 seconds.

Saturday, there were issues with contacts… so no Regular Qs and no Touch N Go Qs. And an absolutely beautiful off-course in Jumpers by Dancer… BUT! BUT! Weavers was great. Weavers is a course of tunnels, hoops, and (in Novice) three sets of six weave poles. Dancer ran faster in Weavers than she has ever done before, doing the three sets of poles and the 126 yards (a football field AND the endzones) in 27.74 seconds for third place (14 seconds under qualifying time). Elly did the same course in 33.08 seconds (and also Qd).

(I just realized that was Dancer’s Outstanding Novice Weavers title!)

In Tunnelers (all tunnels!), Dancer was really flying, despite it being the last of six runs that day. She did the 127 yard course in 23.12 seconds, for 5.5 yards/second. That was almost 10% faster than her previous best of 5.2 yps.

Dancer’s last Q came on Sunday in Open Jumpers, where she saved me from embarrassment even though I almost sent her over the wrong jump–she came back around, did the right jump, and ran so fast that we managed to Q anyway, running 32.56 seconds over the 139 yards–qualifying time was 32.71 seconds, so you can tell it was a bit of a squeaker. It’s hard to make course time in NADAC if you make mistakes!

Monday morning I left the girls with Cat (the Northwest’s finest poodle sitter!) while I saw my doctor for a checkup on my bone cancer. Slightly more than two years after my surgery, it is gone, the holes from getting the plate removed are healing well, and I had the pleasure of hearing my oncologist tell me that I’m cured and I don’t need to see him anymore. A perfect finish to a great weekend!

Knee News is Good News

I saw my surgeon Monday for a post-plate-removal checkup. Healing is uneventful, come back in June for your annual checkup to make sure you’re still cured. This is good news. I am feeling very little pain, walking with almost no limp. Dr. Sorensen tells me he found a bursa–a fluid-filled sac–caused by the plate, and that the resulting bursitis is what caused the pain I was feeling.

He also reminded me that if I overdid it, fell and broke my leg, he’d have to put the plate back in. That’ll make sure I behave for another month.

Plate Removed…

I had the hardware removed from my femur Thursday the 8th. My doctor told me it would be a faster recovery this time. I sort of believed him. But today I actually feel pretty good, and it’s been seven and a half hours since my last pain pill. I am using my cane, but more because I promised I would… The risk of fracturing the weakened bone is fairly high.

The surgery went smoothly. One very interesting experience.

They used a femoral nerve block and a spinal block for anesthesia (and an amnesiac for during). When they were putting in the spinal, they had some difficulty penetrating the back–they were being very gentle, and backing off every time I said it hurt, and I finally had to say “oh get it over with”–and then they penetrated a group of nerves, and I felt an entire nerve network fire, from top to tip, in a spreading pulse. Looking it up, I assume they stimulated the saphenous nerve, judging by the path I felt.

(They hit it twice.)

Of course it was wildly painful, but so quickly that it was over before I could react, except for the sort-of-tingly feeling that remained afterwards that let me analyze the path.

It was quite fascinating, as weird as that sounds, because it made me completely aware of how the nerve works. There was a distinct time interval from top to bottom, although it was very fast, I’d say microseconds. Definitely not instantaneous. I think they were startled by the fact that I found it more interesting than painful after it was over (since it made me shriek when it happened).

Sometimes it’s helpful to be a gnurd.

New Year’s Resolution

I have only ONE New Year’s resolution.

I will walk without a limp. Now, this may seem like a simple resolution, but it really isn’t. First, I’m having the surgery to get the plate out. Some recovery there. Then, I have to get strong afterwards. Lots of work involved in that. I’ll even admit I’d like to lose some weight to make it easier.

My plan for agility this year: Run gracefully [see: no limp, above], give early and clear cues, and make sure my dogs are having as much fun as I am.