Tuesday, October 02, 2007

Atrophy versus 'The best of days'

Sunday was the Victoria 5K for Breast Cancer. The forecast was for heavy rain and 40km an hour winds. We went anyway. Linda and I had a pact; one we made in May when my PT had told me that a) it would be “impossible” for me to do a 5K in the manual chair as I would be too weak and b) that if she heard any more about this kind of self destructive talk maybe she would force me to get the electric wheelchair. Being me, I immediately planned (in secret) to do a 5K race (and a 10K). I told Linda. I did 5K training wheeling, first up to twice a week, then once a week, then once every two weeks, then not at all. Ain’t prophecy a bitch?

So I missed a bunch of 5K’s and 7K’s because they were too far away, or too many hills. I missed the Terry Fox run. But I still had the breast cancer run.

You know someone with breast cancer, or who has had breast cancer; they may not have told you, but you know someone; it is that common. Indeed one of the things I dislike about the public perception of breast cancer is that it is “common” or when someone says, “I have cancer” the thought is; “geez, that’s horrible.” When they continue with breast cancer, the thought is, “That’s lucky!” Yeah, breast cancer is the “good cancer.” Well, I think any time you have to choose how much risk versus how much body part/part identity to cut; it is not “good.” Chemo isn’t good. In the Harpers 2007 article Chemo World, the memoirs of a nurse on a cancer ward tells how the head nurse ended up with cancer and how she got her chemo on Wednesday. And by Saturday she would start feeling fine, and by Monday night, she would start crying. How Chemotherapy is so toxic that for some cancer patients just seeing the nurses coming in with the special suits and chemo drip pump caused a body memory that would start them vomiting before the chemo even hit their system. So yes, lumpectomies, and success rates aside, I don’t think of it as the “good” cancer.

But I wasn’t there that cold and windy morning because of a memory of a friend; I was there because I was incredibly angry and incredibly scared. Nothing like race day to make last minute calls of the bathroom. I was scared that the PT was right, that I was too weak, that I would not finish; that even if I was willing to incur a painful price on my body that even more choices had been taken away and I didn’t even know it yet.

I was in the front of the 5000+ people with Linda behind me, the top runners in front of us and I behind them on the basis that it was far easier for them to run around me than vice versa. I started playing the MP3 player with its heavy beat trance music. If you don’t have the training, then get a machine with enough bass so that you can fake it. And we were off, I was cruising so fast that I am just a blur in the front corner of the picture.

I wish I could explain the overpowering anger that rises when I think of some of the things doctors or occupational therapists or physiotherapists have said. It is usually based around the statements of “This is what you will be like from now on..” or “You can’t do (this or that) anymore…”, “You’ll never do (this or that) anymore….” No, I am not the “plucky” crip who decides she’s going to walk again, climb Mt. Baker, etc. It was me that said, “gee, I seem to be falling down several times EVERY day, maybe there is something I can do where I get around and not end up with so many bruises/hospital trips.”

But after the breast cancer 5K had finished, when I was lying in my bed, unable to move, on painkillers, I faced the wall and if I could have been shaking with rage, I would have been. If I could have smashed plates against that wall, I would have. “WHO ARE YOU? WHO ARE YOU?” I screamed inside, picturing those calm medical faces, “TO TELL ME WHAT I CAN AND CANNOT DO!” In this case, it was less about ego and more about people who, “for my own good”, placed seeds of insecurity, fear and doubt when they could have helped me; or at least had the decency to get out of my way. If medical professionals spend half the time helping dreams instead of crushing them…

The major difference between the training wheeling and the race day 5K is, in training, I am sensible, take a steady pace and rest 30-40 seconds every kilometer or so. When you are in a 5K and there are still over 4000 people behind you and still passing you; I simply don’t have enough common sense willpower to overcome the vanity. So you press on…and on. We went down a hill. I had to brake to stop running into people. “I’m going to pay for this later.” I told Linda. We got to the turn around point. There was a wheelchair porta-potty. They had placed it up behind a curb where there were no curb cuts. I asked Linda for a “hand up” (a move to get over curbs), she bodily lifted my chair over the curb (on adrenaline much Linda?). A bit lighter ala portapotty I started up the hill.

OMG! I have to look up to see the street lights at the top a half kilometer away.

It was long and steep and I cranked the music so all I could hear was the bass in my bones telling me when to push. Linda said later that the volunteers where saying all sorts of things, calling me “inspirational” or “heroic” or whatever. I told her I guess we are supposed to work for an equal world where half of them curse me and yell, “Get out of the way, ya freaking slowpoke!” – I’m always a bit unclear on why we shouldn’t want people to encourage us while we drag ourselves up a hill with six inches a push while everyone runs (or walks) on by. News Flash: This IS harder for me than it is for you (with the exception of the woman with arthritis and two canes – but even SHE passed me on the hill).

Twice during the 5K my body starting crying without me; it just does that tear leaking thing when I hit a certain pain level. But don’t worry, that doesn't stop me. I got to the hill top, gave a weak upraised fist of victory to a volunteer, wheeled the corner and as my front caster got caught in a big old pothole, I was flipped out of the chair.

Gee, I used to be proud of my legs. As of today, the atrophy on my legs has passed my knees now and is half way up my thighs. A visible wasting of the flesh, as the lower leg becomes uniformly even. Without calf muscles, without lower leg muscles to give definition it simply becomes a straight tube of flesh encasing a bone. In my case, functional muscle still, and sometimes weight bearing; but not enough to stop the atrophy from progressing up past the knee until now only the mighty quadriceps remain to fight for leg definition. The right leg is hanging tough; Linda says that Epee leg is still giving benefits. When I look, I feel frustration, regret but a deep sense of wrongness. It is one thing having a bit of a pot/belly because you don’t do enough sit-ups or stair-climbing; but legs actually changing shape, wasting away….grrrr. I’ve always wanted to be “top heavy” but I meant bigger boobs!

When the chair flipped me out, I hit and was out for a short time. Linda said she got to practice her first aid by yelling at people to stop crowding around. I think she put me in recovery position. A female doctor and nurse wearing green jackets were there calling 911 when I woke up. We convinced them that wasn’t a fun idea. And I told them in my “I am a very scary determined individual voice” that if they could get me back in the chair I would continue. They found some RCMP officers and I was back up, I re-hooked the oxygen and Linda held my head upright. Thirty second rest. I set MP3 player to “God is a Girl” and I told the nurse, “Catch me when you can” and I was off.

Being in a wheelchair on a rainy day, I was at an eye view with a lot of three and four year olds kids being pushed in covered three wheel jogger units by the modern “hot moms.” Kids find me fascinating. I tend to wave or simply say, “Race you!” (Hey, I know the child-like mind; I have a child-like mind). So for the long straight -this four year old with huge eyes and I raced (I think his mom helped). She told him, “Isn’t she strong.” Is there something inherently wrong that I was using racing a four year old as my motivation for the third kilometer?

Coming back to the university at 3.5K, I felt a familiar, whump, whump, whump. I had felt it in cars, but never on the chair. I stopped and checked. The left tire was flat, flat, FLAT. The nurse had caught up and was calling to see where a van could come to pick me up. People were passing me, and they weren’t even running. I thought about being pushed to the corner and getting picked up. I thought for about 30 seconds. “I’m going on.” I told Linda.

“You sure?”

“How hard can it be?” That’s a secret phrase Linda and I use for, “This is going to be incredibly difficult and painful.”

Jill, the nurse in the green jacket stayed with me the rest of the way. Thank you Jill.

The chair pulled so hard to the left that I just used the left hand to push and the right to brake, in order to keep the chair in line. I didn’t know that Linda was behind me the whole time with her hands just inches from the handles ready to grab hold if I lost control (see picture). She said later that I kept hitting the orange cones that separated the lanes. I don’t remember because wheeling isn’t like running. When you run a 10K, you can get to the point where you are running on habit; where you are running beyond what you can run and once you stop and walk, you simply won’t be able to run again. There is no instinct in pushing a wheelchair with a flat tire in the rain where a soaked glove has to try and find traction. If I did not concentrate every second on the single concept of PUSH, then a mental lapse of only 5 or 6 seconds would bring me to a halt.

At 4.5K a woman yelled (as encouragement) "It's all for the Cure!" (as Linda said later, "I had no idea what she was talking about, whatever reason we had started the race, where we were mentally at 4.5km had NOTHING to do with ‘the cure.’").

Oddly in all the 5000+ participants I was the only self propelling manual wheelchair. There was an electric wheelchair, I could see it in the distance, and I was gaining.

By the time we reached the finish line, it wasn’t there anymore. I kept asking, “Have we reached it? Can you see it?” We weren’t in the front pack or the second pack, or the seniors, or even the seniors walking a very old dog pack. We were in the “There’s still people coming in?” pack. Eventually Linda had to come around in front of me and say, “We’ve passed it” so that I would stop pushing. When I tell people I did the Breast Cancer 5K they ask, “What was your time?”

I reply, “Hell.” They are confused. I don’t know how else to explain it.

We collected our fruit and yogurt and cookies. I missed getting a “door prize” by one number; I was 4991 and 4990 won a prize. Grrrr. By the time we got in the ride home, I was slurring into non-understandable. One word Linda could understand: Marathon. The Victoria Marathon is next week. She was not amused. She put me to bed. The next day, when I woke up, the wheel to my wheelchair was gone.

No, she was getting it repaired.

“The best of days” I told Linda when I finished the race. She understood. It wasn’t about succeeding or overcoming or “plugging on.” It was something we had wanted to do together; reminded each other over the months to incite the other to exercise. It was cold and early but we were there. It rained and I got a flat but she was there and I was there and we were there together at the end. It was the best of days.


kathz said...

Stunning! Well done!

Thinking about what it means, and the strength and determination it takes to wheel a chair uphill, I don't think I could have done it, even in good health - those chairs are heavy, aren;t they? (I'm so bad at steering that, when I'm tired, I'm capable of crashing a shopping trolley in a supermarket aisle.) I hope you're recovering from it all now - and that you've found time for celebration.

I've seen/heard about the effects of chemo on friends - very nasty indeed. It takes determination and courage to face it. I'm glad you mentioned that.

Casdok said...

Good on you!!!

Ruth said...

If medical professionals spend half the time helping dreams instead of crushing them…

Totally agree with you on this one and loved reading about the race. I completely understand and am so glad you did the race....by the way your time - sure call it Hell but also - it's a Personal Best.....awesome awesome awesome...

KateJ said...

You are truly amazing, and so is Linda. A genuine dynamic duo.
I'm sending a cheque to the Breast Cancer appeal over here (UK), as I guess it would be too tricky to send sponsorship to Canada. I don't believe anyone who actually had someone close to them get breast cancer would ever see it as a 'good' cancer. Years ago I lost a dear friend to breast cancer. An amazing woman, a scientist, and mother of a young son. A huge loss to everyone who knew her.

Sara said...

Right on. In the immortal words of Monty Python and the Holy Grail (maybe my favorite movie, ever), "Not dead yet."

Not by a longshot.

Elizabeth McClung said...

Thank you everyone, I attempted to give context and viewpoint to my 5K, and now I try to get through each day on less pain pills (you play...you PAY!).

Kathz: My chair is only about 24lbs with all the gear on, I however am considerably heavier. I would like to celebrate - any suggestions?

Casdok: Thanks! I'm a praise whore: more more!

Ruth: Thank you for saying Personal Best and challenging me to view it, and myself again.

KateJ: Thank you for your contribution, and I am sorry about your friend. I am always at fear that Linda will get Breast Cancer, but so far all good (I help her check for lumps regularly) - she is a great friend and partner and the fact that what might be seen as a bad time is, for both of us, a good memory doing something we wanted to do together proves that (I hope?).

Sara: No way, onward!

Sober @ Sundown said...

Your determination is simply amazing. And, your relationship is with Linda is covetable (in a good sense).

cheryl gilson said...

Good for you for not letting the doctors set your limitations and for going for the 5K. Not dead yet indeed!

Keep kicking arse and taking names!

Wheelchair Dancer said...

You go, girl!

Burn them wheels; flip a fist at the medical world!



rachelcreative said...

What a marvellous maniac you are :-)

A true kick ass kind of girl.

tornwordo said...

Gosh that was just so moving. I was riveted. Now that it's been a few days, has the rehab time been worth it? I hope so, and I hope this doesn't make you grimace, but all I can think to say is how inspirational that was.

GayProf said...

Good for you! I know you are tired of the pain medication, but that might have inspired me more if I knew they were waiting for me.

em said...

In the battle between atrophy and best of days, best of days wins!

When I read you all I can do is think of how fierce you are. I don't think I have ever thought to use that word about anyone else.

Elizabeth McClung said...

Sober: Thanks, no matter what happens, I know that I have led a charmed life because it was with Linda.

cheryl: Ug, onward, now the trick is knowing how bad it is going to be and DOING IT AGAIN! hahahaha!

Wheelchair Dancer: You should know, you're one of the people whose playbook I stole to copy.

Rachelcreative: kick ass...haul ass - I take what I can get.

Tornwordo: I can use my left arm again and tonight was my first time off painkillers. But was it worth it - totally! I hurt no one but myself, and I enjoyed it. Wait, that didn't come out right.

Gayprof: pain meds and ice cream, two of the world's great motivators (you notice I didn't go to the gym either).

em: thanks, I like that, "fierce", It sounds so much better than say..obsessive psycho.

Ms. Pet said...

"Yeah!" *picks up pink feather fans and treats you to naked fan dance.* Only for special occasions don't you know! *wiggle, wiggle*

Sometimes, people telling us we won't ever walk again, or won't be able to run etc. can be just what we need to get our RAGE ON. LOL I have a saying "OUT YOUR RAGE." That I've used many of an occasion.

I was told by experts when I was around twenty, that they were unsure if I would ever be able to have regular adult friendships let alone romantic relationships due to the degree of abuse, especially the psycho-sexual abuse I suffered in my first twenty years. I too reacted to this and other "you can't, " with a "F*ck YOU!" attitude. People have now told me that it was my Anger that saved me from being one more statistic in a psych ward or prison where, truth be told, the statistical probability of me ending up in one of those places was extremely high. I was lucky as it was my first therapist who taught me to "get angry," to rise up and fight back, and to use that anger as a creative force, as a force of protection and empowerment.

Your post and description were wonderful. I'm so glad you focused on sharing the RAGE that drove you as people, especially women, need to be told and shown repeatedly that Anger is not a BAD emotion, but energy, power that if channeled and directed positively can power us to amazing "heights."

I am so proud of you. Not because you finished the race but because you STARTED IT in the face of overwhelming societal pressure that said, "you can't.' Now, if only, they would stop telling us what we can't do when we know we can AND listen to us and accept when we say we can't do something instead of telling us we can! LOL That drives me just as crazy! When they treat ability issues as if they are simply "low self esteem,' and start doing the "of course you can! You just have to believe in yourself!" kind of behavior. Hello? It's my body, my mind, etc. perhaps I actually know what I need, what I'm capable of doing and what I"m not! *grrrrr* LOL

Such an amazing post!And one of those "memory making," days for sure!*blush* sorry for the length, but you know me! Short, sweet and focused is not an easy one for me!

elizabeth said...

You freakin rock. (I would have worn some seriously freaky high heels though - if that had been me) All kidding aside though, you're quite the tough cookie and I'm really proud of you!!! And Linda kicks ass too.

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