Thursday, August 21, 2008

Reason to live #9: Because I can

Right now, I have no choices about my treatment, or if I will recieve treatment, or about the progression of my diseases. In some ways that is a blessing: where I do not having to weigh up the agony of Chemo versus a statistical percentage. I just went out for a wheel right now, and got frostbite on two fingers, it was 18 degrees C. out. The yellow, corpse white is now a bright red. Linda says over the phone that I might have to stay in a bubble. I said, maybe I should start wearing more of those armwarmers.

But progression aside I still can make choices of how I spend my energy, or what I do, within limits. There are those who can’t.

Collette, who comments here, is spending Sept. 6-7th walking 60K for breast cancer. I don't think she has ever walked 30km in one go. She made a choice.

Breast Cancer is not only the highest risk cancer in women, but 1% of those who get it are men. Yet for men, detection before it has moved to the bone is less frequent. So for those who have breast cancer history in their families, it is not just daughters but sons at risk too. In fact, one of the reasons fatality in men with breast cancer exists is because they are unaware that it can occur.

I know of women who have had breast cancer, because like any woman over the late 20’s I can’t imagine not knowing someone. Which is why Collette and the Weekend Warriors are spending two days walking 60 km. A fundraising choice, and a commitment toward a world where one day we don’t know of a friend or relative who, each week, spent the day before chemo crying. Who vomited, who had insomnia, who had their hair fall out, who had the visual aspects of their body and their identity reshaped for their survival. And those are considered the “lucky” ones.

There isn’t a 60K walk/wheel in my city or I would have joined up (hey, another couple first aid tent to rate!). But I will be doing the Breast Cancer Run in my City in early Oct.

You may be wondering what this has to do with my reasons to live? It is because every day and every choice I make, there are people in hospitals and hospices who do not have those choices. Last night, for the first time, I had to be fed, so yeah Raccoon, I know what that is like, and I’m guessing it doesn’t get any more exciting or dignified. I did insist that I did not actually need to be fed, as I could drop my face in the plate and eat that way. “Like a dog?!” the night worker said in shock, “But that does not give you dignity!”

“Lady,” I said, “After you’ve sucked as many pain pills off the floor as I have, you’ll have no illusions about dignity.”

After the series of seizures, or during, I don’t know exactly, I was able to use the built up fork to stab the food but couldn’t turn my hand or arm. And when I held the fork the other way, I WAS able to bring it to my face: like my forehead, my cheek, my nose, my hair, just not my MOUTH…..let's say the hand and eye coordination didn’t work. But in that, having something taken away, I realized that I still have many choices left, mostly thanks to the care workers who actually DO care about me and people like Linda and Cheryl. During the last few weeks I have woken up in the afternoon paralyzed. But thanks to a new listening system, Linda is able to move, transfer and transport me from my nap area into the study where I can work and communicate.

I live because I can live. I do because I can. And I try when I can’t.

In a few short weeks Collette will start her 60 km walk, and I believe that she will make it. I think it would be nice to drop in to her webpage here and give her a message of support (click on ‘friend’ and donate $10 or more, which is $9 American and 5 pounds UK, all of which is tax deductible – and you can leave your message). There is a list here of where the money goes, though I personally will say that I was hoping for a LOT more money focused toward some sort of new mammogram technique which isn’t so darn painful.

But if she does not finish all 60K this year, that is not what is important, because after all, here in Canada, one of greatest athletes is the one who didn’t finish the race, Terry Fox. It is the dream, the choice, the attempt which matters.

As for me, the following week, I will be participating in the Terry Fox Run, a race which has no winners, no medals, not even an entry fee, just people getting together, raising funds for a world where there are more choices and less cancer. The Terry Fox run is unique not just because he wished to eliminate the competitive nature but because people of bicycles, on roller blades and wheelchairs are welcome. Depending on the city, dogs and even horses (or people on horses) are welcome to participate as well. For those in Victoria with dogs, the run in Central Sannich welcomes dogs, roller bladers, cyclists and wheelchairs. I will be going to Mile Zero which has a 5K and 10K. Geee, I wonder which distance I will pick? It has never been about the medals. It has been about the choices.

There are days when the beast which are these diseases and this pain is all over me, there are days when the beast which is the cruel crushing medical system will roll over me. But there will be moments, and minutes, and hours and days when I make choices, when I decide what to do. When I live because I can. I talked to Linda today about how I feel ever more so disconnected to the rest of humanity, that what I feel and experience is so far away from what they imagine, what I of a year ago could imagine. We talked about how it would be if things could be different, and what life would be like if her credit card was all paid up. I immediately said, “Well, if that happened, then I would spent it all on anime and other items that I would promptly give away!” And she laughed and said that is EXACTLY why she is getting a limit like $100 put on the card. I made her laugh. It was just a moment but I made her laugh.

Yes, one day I will have to live in a bubble of sorts, and probably be fed more and more meals. And I wish that one of those choices would allow me to wheel with Collete and Team Weekend Warriors in Toronto. I think doing 60km would be VERY tiring on the arms. But maybe, with friends I wouldn’t notice the pain until LATER.

I live because I can. I live because my grandfather can not. I live because dying is easy, because giving up is easy. I live because spending 7 hours to prepare and then recover from feeding squirrels for 45 minutes is still feeding squirrels. I live because choices can be made. I live because people want to take those choices from me. While I can, I live.

Terry Fox, in the interview in which he ended his run, and then while undergoing treatment set up the Terry Fox Run, said, “I just wish people would realize that anything is possible if you try. Dreams are made if people try.”

19 comments:

Tom P. said...

Beth - the book came today! Thanks so much. I can't wait to start reading it. And Beth got her postcard. I'll send you an email tomorrow.

yanub said...

Good to see you in fighting fettle. I know you can't feel everyday like taking on the world.

And again you show your generous nature. I swear, you are the most considerate person I know of. If only you could bottle it and we could drop it on international troublespots, the world would be a much better place.

Raccoon said...

my father, in 1989, told my family that he had inoperable risk cancer that had spread into his bones. Like you said, men don't get breast cancer, right? Obviously, he'd had it for a while... He died in 1994, missing his second grandchild by four months.

Yeah, isn't being fed fun? And things that you're supposed to be able to hold, like burgers and pizza, popcorn and baby carrots... sipping a cup of tea requires a straw...

And being able to wipe your face with a napkin when you dribble pasta sauce or stew...

SharonMV said...

Dearest, sweet (yes!), fiesty, brave, lovely Elizabeth,
My heart breaks to read about your day yesterday & leaps while reading your blog of today. Your spirit is strong. You said in the letter I received today (yes, you send me postcards & gifts & cards when you are going through so much & being treated so abysmally) that sometimes you feel my hand reaching out for yours in the darkness. Well, here it is, my hand is always extended to you. I have felt yours holding mine in the lonely, darkest of nights. You are not alone. There are many who care for you. We are humans with human feelings ans you are one of us.
It is so difficult when we have to deal with those who have had the human feelings trained out of them. Or who have been taught that the sick, the disabled or people who just need their help & services (& who are probably paying for these services)can be thought of as not real people, not just like them. All so they can do morally questionable things. So insurance companies can make money. so governments can keep costs down. And we have to deal with them while at our weakest.

I say maybe some of us can get together & "tag-team" these people. Set up a network. Having a bad day? badgered by health care agencies, insurance companies. Let's see - sharon's feeling pretty strong today, brain is working - she'll call them & tell them a thing or two. What, EFM's in a fighting mood & can't got to boxing - she has has a few minutes to call that bothersome case manager & give her what for. And we could even recruit some of those able-bodied healthy types who want to help. You know, our fellow humans.

Anyway, I sent you an e-amail a little while ago, before I'd caught up on your blog. But I'll say it here too - thank you for the card, letter & fun stickers decorating the envelope. And I did get my IVIG yesterday. I was up late, but then slept late this am to catch up.

Sharon

Evil Lunch Lady said...

Just a short comment, I'm still reading and sometimes I can't put into words how I feel about you. But know this, your strength gives me strength. I wish I could ship you down here and let the docs here give you a chance. And Chemo?? I must have missed something...

Abby said...

Good reason.

I hope you enjoy the Terry Fox Run x

Neil said...

Beth dear, you are the most "human" pereson I could imagine ever meeting. I've met and talked briefly with several Canadian astronauts, and they're fascinating people with wonderful training and incredible experiences to talk about. But their experiences tend to be positive. You, my dear lady, are seeing some of the worst parts of human behaviour, and you're STILL positive on your good days. No need to ask how you do it, though. I know that on your good days, that's who the real Beth is, and on your bad days, you've no choice.

Definitely wear armwarmers, kiddo. If they help, wear them. Wear whatever you need to whenever you need it, and screw fashion - or rather, create your own fashion trend.

Collette: a 60K walk? I applaud you! And knowing several women who have had breast cancer, I'll be with you in spirit that weekend.

Zen hugs all 'round, and Beth, I'm thinking of you as I prepare to walk to work in 12 degrees and rain. Just what the farmers are hoping to avoid for a few weeks!
Neil

Anna said...

Welcome back.
Feels like I am going blind in one eye:) Stuck the mascara brush in my eye AHHHH.
Anyway. Welcome back.

KateJ said...

When I first visited Canada in 1988 I made a trip across the Rockies, during which my uncle told me about Terry Fox. There's a mountain named after him, isn't there? I hadn't heard about him before that and was really impressed. I'd forgotten about him since then... but you prompted me to read up his full story. Now that's someone worth calling a hero. As are you, Beth, as are you.

Dawn Allenbach said...

You're my fricking hero, you know that?

Gaina said...

Oh yeah baby - Elizabeth FUCKING McClung is BACK!! :D

At least you have a nightworker who does actually *care* about your dignity so that's one good thing I suppose!

I am totally with you on the 'reasons to live' thing. Even if you don't have a terminal illness, it still applies. It's just my personal attitude that the lights WILL go out one day, so you should have as much fun and as many colourful experiences between now and then as possible!

Judith said...

I like your 9 reasons so far! This one is close to my heart - living because we can, trying mad things because we can, climbing it because it's there!
Cool post!

SharonMV said...

Dear Beth,
been thinking about you today. Hope you are OK. Having a little fun maybe? a postcard or two? I'm going to re-read this most recent blog, as I didn't have time to process it all last night.

Kudos to Collette! good luck with your walk next month.

Sharon

Lisa Moon said...

Ahh, yes, dignity. Means so many different things to different people... and funny how life can challenge your definitions in ways you never dreamed possible.

Dignity seems most present to me in your determination. How you eat, speak, communicate or get around does not dictate your dignity.

Glad to hear that worker at least considers dignity, but she might be surprised at what really gives us dignity and what takes it away.

Funny, when I was injured myself, it was working with adults with developmental disabilities. One might assume that there are many spaces there where there is no dignity. Wiping someone's bum and helping them eat is not only *not* undignified for them (when done correctly and with the right attitude), but for me, as their worker. In fact, everyday I was blessed with more clear examples of dignity, human spirit and gosh-darned determinedness than I have ever encountered. I felt honestly PRIVILEGED to be of assistance and that is the memory I keep of that time: the privilege of learning and of another perspective.

Hmm, perhaps instead of feeling sad at my circumstances (limited ability to walk/stand for long) I should think of myself as similar to an injured soldier; proud to have fought the good fight, with the battle scars to prove it!

See? There's another perspective... and it makes me feel happy now, so thank you for this post and the chance to comment!! :)

FridaWrites said...

Don't forget: Reason to Live: Because We Love You!

Laura said...

Go Collette go! I've had my brush with breast cancer. Thanks for walking!

Hugs and ice packs,
Laura

Elizabeth McClung said...

Tom P.: I'm really glad, I hope that Beth enjoys the postcard. Thanks for letting me know.

Yanub: I don't think I am in as much fighting feetle as I would hope to be, this is somewhere between "What must be done." and "Make choices while I still have them to make."

Thanks though.

Raccoon: I'm very sorry about your father, and I have often lobbied to spread awareness for male breast cancer simply because it seemed that the more pink ribbon events were held, the less anyone would talk about men and breast cancer. I am sorry for your loss.

Yeah, I guess there is a whole world of fun with feeding ahead of me.

SharonMV: Sharon, I am glad you recieved the letter in a time when you sounded like you needed it most. I feel myself drifting away, unable to communicate what this experience is like, because this is the part no one wants to talk about; the body taking control, or rather losing control, the choices taken away....

I do need hands in the darkness, and I am glad to have yours. And I am glad you have mine.

I am trying to set up a "medical/health/hassle" team because stress makes me make phone calls and lowers my oxygen, raises my pain and stress and triggers seizures. Everytime I have a seizure, more of my brain dies.

I am very glad you got the IVIG, I just wish they didn't put you into such turmoil every time.

Evil Lunch Lady: Thanks, I am quickly leaving the part where I can shipped anywhere, or rather I am quickly entering the part where I can be shipped anywhere. Macabre humor.

Abby: I think I will, Terry Fox was remarkable simply by doing what he wanted to do, dispite the fact that amputees "don't do that" and "that's impossible" and everything else. He has always been my role model.

Neil: I DO have positive life experiences too, I was at the falling of the Berlin Wall, I've been to the arctic sea, been inside a forest fire, greeted Lords, been friends of Dukes and Duchesses (deposed), worked with major movie studios on what books to put in their backdrops, and then seen my work on film, hiked 1000 miles, biked more than that in one summer, and held more jobs and done more degrees than worth recounting. This is just another adventure; sometimes you have a BAD train trip, and then the next day something magical happens - like walking in on the last day of Carnival in Venice (as happened).

Yes, wearing more arm warmers - is that official Medieval medicine man orders?

I have NEVER heard farmers in the prairies talk about "perfect weather", "Perfect price", "perfect crop" or anything else good - When I got together with Linda I couldn't understand how a farmer could have 10 straight years where each was worse than ever before and still be in business, I guess that is just farming.

Anna: Ironically, I am wearing the patch more and more as every seizure throws off my left eye, so I can't see out of that eye. Once the pain goes down, how about a nice stylish eyepatch?

KateJ: Thanks very much for your reading and your work, and yes, I think we all need heroes, and the fact that Terry had pouts, swore, wouldn't speak to his best friend and told people NOT to jog with him as "I AM going as fast as I can and seeing people lightly jogging doesn't encourage me." only makes him more real, more human, more my hero.

Dawn: Oh no, but I have no INTEREST in crossing Canada using one arm? Do I still qualify?

Gaina: For me I realized that as each week and month goes by, I will have less and less choice, I will have less and less control over things. So I can either take change of those choices I have - or do nothing, which is a choice in itself. I choose to live, because I still can. When that choice is taken away, well, then the game is over. But until then, as long as there are choices, I choose to choose, if you know what I mean.

Judith: Thanks, I left myself rather exposed on this post and I think maybe I left too many connections unspoken. This is not the way the West is used to talking. No one wants to admit they have limitations, no one will admit they will get old. I ran marathons in my youth for a reason - it hurt then, and I bet it hurts MORE when you are 55-65!

Sharon: I am glad that the treatment seems to be helping you. I am very glad.

Lisa: I completely agree, for many people to not burp or fart or speak with the right accent and use the right finger when drinking tea is DIGNITY, to hold oneself with comportment. Once you have conditions which cause you to burp and fart and slur and not be able to use keys in the door, you can either hide away or.....change your view, I guess.

I am glad you feel happy, for me, I feel a sadness and frustration that so many people have disabilities and yet so few are educated on how to percieve dignity or even people with dignity. I would not see your limit in abilities to walk or stand as a loss of dignity, unless you happen to be God (You'd tell me if you are, right?). In fact, I'd probably be the one embarressing you by going, "Geez, give up a seat someone!" because I see your face getting paler or limbs trembling. Of course, some things, things I am used to are easy. To be in a wheelchair embarressed me at first, now I LIKE embarressing others who are unconfortable around me and it. But seizures, I ask people with tears in my eyes to please leave, when obviously they can't, as I stop breathing, because for once, I DON'T want everyone to have these memories of me flailing around, of me drooling, of me staring out blankly. I will outgrow that, but for now, I have to accept that THAT curtain is open and THAT choice is gone. Thank you for your comments, which helped me express mine.

Laura: Thanks, I think what collette is doing is a great thing, committing to changing the world, 1 km at a time. Just because there may not be a brand new world at the end, doesn't make the commitment any less.

Neil said...

Armwarmers are only sensible, dar. No need to be medieval about it. Actually, I do modern first aid, because fighters and other attendees at medieval events can be hurt. We arent' allowed to cause blood to flow (it's supposed to be stopped with fist aid, not started), and leeches are definitely out. Unless they're the gummy kind; those are allowable. "No,no, don't try to swallow it whole; you have to chew it thoroughly for the medicine to work."

Just got home from a surprise birthday party for a friend. Music was played, beer was drunk, and fun was had, but now it's time for sleep. Except that oldest son is stying the night (having been with us at the party) and his girlfriend is appparently here, s he's outside chatting - and it's 4 degrees. Silly bugger; why doesn't he bring her in out of the cold?

Zen hugs for you and Linda, and foul thought for VIHA and Beacon,
Neil

Dawn Allenbach said...

Of course you still qualify. You have many super-gimp qualities.