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Cachexia

Posted by on October 10, 2012 in Medical Procedures and Other Drugs, My Health Updates - 25 Comments
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Cachexia is a difficult word. It’s pronounced kuh-KEK-see-uh, but you could come up with any number of pronunciations simply looking at the word on a page. It’s an ugly-looking word, too, a hairball of the written word. And it signifies a rather ugly side effect of more advanced cancers. Cachexia is the wasting of muscle and body mass. It is the Steve Jobs effect, when the genius leader of Apple stood on stage during his last months thin beyond gaunt, sunken. It was clear why he had stepped away from the company.

Some mistake cachexia with weight loss. Joggers lose weight. Dieters too. Cachexia, however, is unintentional loss of muscle and mass. Fat, too, if you have it, but cachexia can begin wasting your body before you even notice its presence beneath the fat. The weight loss is a symptom of the proactive degeneration of the body rather than a byproduct of not eating. Indeed, you can eat as much as you want and still fail to contain the dropping pounds. Doctors don’t really understand it, and they don’t know what to do about it. They usually tell you to eat more. Which has a promising logic to it.

The problem is that cachexia brings on an utter lack of interest in eating anything at all. It’s not that food makes you sick or alters your taste buds, as chemotherapy might. It’s just that you have no desire whatsoever to put food in your stomach. You feel full all the time. Think of it this way: You’ve just eaten a normal American dinner: a fully roasted pig — with snout and eyes staring you down — along with bowls of mashed potatoes, huge chunks of bread ripped from the loaf, an entire head of broccoli. Bones and grease slosh at your feet beneath the table. A Big Gulp rests near your plate, a straw with all of its irritating slurping sounds poking from the lid. And then comes desert, a brownie sundae with a small mountain of whipped cream. Even Howard Taft would not be ready to eat again in the next hour. That’s because this is how you feel when you have no appetite. When you are satiated. When you lack hunger. This is cachexia.

Even if you manage to eat despite the lack of desire to do so, you still lose weight. Your body’s metabolism outstrips your caloric intake. You simply can’t eat enough. At first you’re delighted by the doctor’s orders: Eat anything high in calories. Eat ice cream. Grab the cookie jar. That extra cream in the Starbucks? Go for it. Try to eat balanced meals, of course, but when you can’t — just eat. I’ve been told to “graze,” like a cow in a field constantly, absent-mindedly, bowing down and pulling up some turf, grinding the cud with that weird sideways chew.

There has been little research on cachexia because it seems like a minor obstacle in the face of cancer (or other life-threatening diseases). Yet it contributes to a significant loss of energy and increase in fatigue. It turns your body against itself. It occurs in about 50 percent of patients with advanced cancer and is responsible for the death of 20 percent of those individuals. Seems to me a little more research is not unreasonable.

So, yes, I’ve lost some weight. I have no idea how I look to other people. All in all, I’d say I look pretty healthy. (And, in the context of my cancer, I believe I am pretty healthy.) A lot of people seem surprised when they see me, though. “Wow, you look good.” And while I don’t dispute my ravishing masculinity, I think the compliment rises more from an expectation that I would be ashen and sunken-eyed. After all, I am one of those people with “advanced” cancer.

Despite the compliments there are times, usually late at night when everything seems grimmer, when I look at myself in the mirror and see the cachexia instead of myself. I see ribs and collar bones in ways I wasn’t meant to see them. When I was first diagnosed I weighed 165 pounds. At 5’ 10’’ I’ve always been a wiry fellow. Growing up in Georgia and Florida, I participated in the normal sports regimen of the South — football, baseball, football, baseball. And then some football and baseball. Until I was a little older anyway. In high school, my “wiry” frame had the potential of turning into shattered glass going up against 200-pound linebackers. I switched to wrestling, where my size became an advantage. As in boxing, wrestlers take on opponents in set weight classes. As a sophomore, I engaged in epic conflicts of … 120-pounders attacking one another like rabid squirrels.

My historically lean frame, I think, has helped hide the degree of weight and muscle I’ve lost. There is not the shock of a heavier person gone suddenly thin, which emanates weakness and vulnerability and that sunkeness people expect. I have simply gone from skinny to skinny. There is no dramatic visual impact. But I feel it. Today I weigh 125 pounds, a loss of 40 pounds on a man who doesn’t have ten to spare. Wiry is not really the term I’d use any more. I’m embarrassed by the change in my body, to be honest, and do my best to cover it with the clothes I choose.

I don’t fool the doctors, though. My weight is often one of the first things discussed during visits to the oncologists. When I last met with Dr. Collins at Georgetown, he looked me up and down and asked me why I wasn’t holding any food. He would have been delighted if I had come into the examining room holding a turkey leg or ham sandwich. “You should be eating something all the time,” he noted. Grazing, he reaffirmed. Dena volunteered the fact that she had a pop tart in her purse, for that specific purpose. “Why aren’t you eating it?” he turned to me. “He says he doesn’t want to look like a pig when you come into the room,” she ratted me out. Learn the pig. Love the pig. Live the pig … Be the pig.

Some days, though, my appetite comes roaring back and I eat entire meals. Maybe not the roasted pig (I’ve never been able to eat animals that look at me), but a bowl of macaroni and cheese or a shrimp salad sandwich. (My mother brings her Savannah skills to bear on these sandwiches and they are irresistible. Cachexia or not.)

In the way of all things cancer, I am optimistic. I am confident I can gain the weight back. Lately I have been feeling better, some energy is returning and seafood is calling. Today is Dena’s birthday and we are going to Baltimore to stay the night (prior to our meeting with Dr. Hammers at Johns Hopkins tomorrow.) I hear some oysters calling my name. I shall answer them.

  • Bill Bro

    I recall trying to explain this to my dad when he was dealing with CLL a decade or so ago. You’ve made a topic that is difficult to comprehend very understandable. This will be of great benefit to others, Chris.

  • Pat Yovich

    HI Chris and Dena….We still think about all of you and pray for all of you…Can’t even imagine all that you are going (and have gone) through…The best part is your “humour” which you still have…even if it’s NOT all the time (so who cares?)…Your writings are inspiring, as well as informative….Thanks for ALL you do…Thanks to DENA for ALL she does every day and night…And thanks to your kids who are “the joy of your lives” for being there for you…and especially for mom, Linda, who is the “best cook in the world!”
    Love and Continued Prayers.
    Pat and Alan, Pooler

  • Steve

    Hi Chris:
    Thanks for sharing. I was one of the “lucky” ones. I’m praying for u.

  • Cheryl Raduenz

    God Bless you!!!

  • http://www.facebook.com/connie.m.abel Connie Mundy Abel

    Chris, you are never far from my thoughts and prayers as my husband is battling kidney cancer as well. You and Dena continue to be an inspiration to couples like my husband and me, Enjoy your birthday girl and best wishes for an encouraging report from the Doc.

  • Amy Hadley

    My thoughts and prayers will be with you tomorrow (as always). Eat something good in Baltimore tonight and please wish Dena a happy birthday for me

  • Jen Pemberton

    Have a wonderful evening in Baltimore! You are in our prayers Chris Battle! Hope to catch up soon.

  • Shaun Tierney

    Happy birthday dear Dena. I wish I could give you the one thing you want, but I can’t. I hope and pray that Dr. Hammers does tomorrow. Chris, at one point I had also lost over 40 pounds. Twice I went 30+ days without any solid food. Felt exactly like you. Then something clicked and I started wanting to eat again. Gained it all back, plus some. I will pray that something clicks for you soon. Wishing you good news tomorrow.

  • Ellen Howe

    Chris, even though we have not seen each other in the three years since we worked together, I read your every post. & pray for Dena, you & the girls. Stay strong, believe in miracles & keep fighting. You are an inspiration to so many. Fondly, Ellen

  • http://www.facebook.com/profile.php?id=1166779905 Pam Pammy Pamela

    You should make all these entries into a book. Some of the proceeds can go towards finding a cure for kidney cancer, some go to your family. Or…. give it all to your family, I’d still buy it. Great work even though you have to suffer so much in order to write every piece! You are hysterical and I would love to give my parents a copy of your ‘book’. After losing their son (my younger brother) to kidney cancer last year, I think this funny, yet informational journal would be enjoyable to my parents. Since they do not know anything about the internet, a book is more their speed.

  • http://www.facebook.com/mjpattison1 Mary Buys Pattison

    If only by sheer will power YOU could make things better I know you would. And if only by all the prayers of those who care we could make things better, we would. We will all keep trying!

  • Don

    I am having your symptom too. I have renal cell cancer, now missing my right kidney. I was 255 pounds, now 199 pounds and still losing weight. I been pooping it out seems like as fast I put food in. I am concerned like you. I was or still stage 4, but manageable with chemo pills or infusions. Side effects too but I tolerate them, if I learned anything from your blog, I will graze!

  • Dan and Jan Eversole

    Chris and Dena, you are always in our thoughts and prayers. Happy Birthday Dena and we hope for a good report from the doctor.

  • Bonnie

    Chris, I am always uplifted by your unbelievably funny and wonderful explanations of all things in the name of cancer. I am also in awe of your spirit, determination and perseverance as you work through this terrible illness. Thank God for the gift of faith and I know you have that. Recently I read somewhere that our dreams aren’t as good as God’s plan for us.

    Know that I think about you and Dena EVERY single day in prayer and feel blessed that our paths have crossed. Thanks for for your honesty and fabulous sense of humor. Happy Happy Birthday to Dena! She is most definitely your angel on earth.
    Love,
    Bonnie Walsh

  • Mick and Sue

    Hope you find some good fattening oysters!! Love to you both!

  • Karen in Ottawa Canada

    happy birthday to dena and thanks for explaining this in terms that are understandable – and with your wit in full working order. i so look forward to your posts and always smile as I read – which is a great gift you’re giving me on a regular basis. thoughts and best wishes to you for your doc appt tomorrow. hope the baltimore folks aren’t rioting in the streets after that great Yankee 12th inning tonight!

  • Minnie Kriek

    Hi there, Happy birthday Dena. Many years ago, before 1994, (a watershed year in our neck of the woods) you would have had a holiday on your birthday, Kruger Day. A day in which we celebrated the birthday of a cantankerous old man Paul Kruger who thought he could cock a snoot at the British Empire and I believe you are just riveted by this info!!!
    I hope the oysters were delicious and the news from the doctors will be a further boost to your journey of weight gain.
    Best wishes
    Minnie

  • Margo – Palm City, Florida

    …another terrific post packed with information and that ever-present touch of “Battle humor.” You are a gifted writer, Chris. As much as I hate doing so, I guess many of us must thank kidney cancer for introducing us to you! You, Dena and the girls inspire so many of us!
    My prayers travel with you and Dena to Baltimore today. Praying her birthday present comes in the shape of positive news on your scans. Safe travels!

  • Teresa Shehada

    Hi Chris, I’m one of those people whom you have never met. I can’t tell you how often I think of you and your family. Many prayers are sent your way. God bless you and continue to give you strength. You are incredible and your determination awes me. Keep on keeping on.

  • Kim Larkin

    As I read this I am headed home from Duke and you all have been consistently on my mind. Thank you for sharing your spirit, your heart, your good andbad times with us in a way that never fails to leave me with even more hope.

  • Neil B. Feldman

    Chris, I have only recently found your inspiring blog and have not yet read all your entries. I had my left kidney removed in May 2010 (Chromophobe cell type – 10.5cm tumor fully encased in the kidney) and was deemed “cancer free” at that time. Did the usual CT scans every 4 months since then.
    Mets were found on my sacrum (base of spine) and left femur (thigh) this past July…

    I am now in the second week of my second cycle of taking Sutent (50mg
    with 4wks on/2wks off). But so far I have no side effects. Not even a
    slight bit of fatigue. I believe there is major a reason for this, although I realize everyone’s “mileage may vary”.

    As soon as I discovered that my cancer had returned – and after being
    “cancer-free” for 2+ years – I immediately changed my diet.

    I went almost totally vegan – absolutely no meat (with the exception
    of fish and seafood) and no diary products. I also began taking an
    intense regime of over 15 natural
    anti-inflammatory/anti-cancer/dietary/hormonal supplements. Details of
    this kind of approach are outlined in the book “Life Over Cancer” by Dr.
    Keith I. Block. I highly recommend reading it. It is invaluable.

    I can also add one other anecdotal testimonial about using appropriate supplements
    and changing diet. Before I started taking the supplements I was in
    constant pain. I was walking with a slight limp and I could not walk up
    the stairs “normally” (I could only manage one step at a time). I
    could only control a constant dull, throbbing pain in my left thigh by
    taking the maximum dosage of Ibuprofen (400mg) every 6 hours. And even
    that would fail occasionally. (Of course this was not good for my one
    kidney either). However, a few days after I began following the
    supplement regime the pain started to recede. In a few days I was able
    to stop taking any Ibuprofen at all. I became completely pain-free and
    have been ever since. That was almost 3 months ago. Incidentally, I reside in the Rockville area and would be happy to explain more.

    I do apologize if this is territory you have already explored.

    • Mary

      I’m sure Chris knows about this –it seems he has researched everything. However I appreciate your advise. I too have Chromophobe RCC and had right kidney removed 2009. I would love to know more detail about the supplements you are taking. I too have muscle pain –not to the extent you did but my life would be so much better if I could get rid of it in a safe way. If you want to email me off Chris’ page do so at marysuarez@frontiernet.net
      I will look for this book. Thanks.

    • Dena

      Thanks Neil — it’s always so great to hear about things that have worked well for others. We’ve read a lot of books about diet, lifestyle changes and supplements – but we’ll look at the book you recommended as well. Has your doctor prescribed a biophosphonate such as zometa or xgeva for your bone mets? If not, I’d ask about it! We’ll be keeping you in our thoughts — thanks for following the blog!

  • Mary

    I’m routing for you to hang in there. Go for those oysters –how about lobster with lots of butter?

    • Mary

      OPPS!!!! I MEANT “ROOTING”

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