43 Things

A Girl in the Curl is appreciating the little patch of sunlight shining through the blind

FEAR 5 months ago

constant fear and I haven’t even seen the people at UCSF yet.

I am not afraid of anything they say or do to me now…I’m afraid of the future. The future! Can you understand what that feels like?

I thought I knew all about cancer, having it hit so close to home so many times. Growing up, watching my mother suffer chemo, and radiation, and then when the cancer came back, how much it took out of her. But for all the compassion and empathy I had for my mom and brother, it’s nothing in order to prepare you for what you actually feel when it’s YOU.

“It’s cancer”

For days the words echoed and rang in my ears as if someone had fired a gun near my head.

I never once gave a rats ass about losing my hair, or was afraid of surgery—I know all about that. What keeps me awake when I should be asleep, what makes me break out in a cold sweat, is the fear of what happens AFTER…and when.

When the fuck will it come again?
Will I be here a year from now?
Five?
Ten?

I don’t like the odds.
I dont’ like the rest of my life.

Cancer survivor—fuck those words.
No one survives it indefinitely—unless you play Russian Roulette, or ride a motorcycle without a helmet, it’s eventually going to come back to your door, and maybe, if you’re lucky, you can hand it another IOU and send it away for another little while…but it will eventually come back to collect.

When.
When.
When.

Jul 20, 05:15AM PDT | 20 cheers

Comments:

A Girl in the Curl is appreciating the little patch of sunlight shining through the blind

yeah (sigh)

I want that too, and right now, I don’t know if I’ll ever get there…moments will always be (at best) bittersweet for knowing that no matter how good I ever feel at any given moment, my own body could be mounting an attack.

I’m only sad at the liklihood (because I do love life) that it won’t be as long as I’d hoped, not that I ever had guarantees…but with MS, I was prepared to face a wheelchair, and loss of ability to walk…but never my own mortality.

And, I see people die all the time. As an ICU nurse, some folks just are not going to make it, and you know it…but watching my mom go to cancer, and my brother…those were two horrible, painful and difficult deaths (comparatively)

My mom would say “you’re not even sure about treatments yet and you’re talking death!? you might as well just jump in a grave now because you’re not going to make it with that attitude!” and she’s right…

I think I’m angry at the injustice. I eat well, I work out, I don’t “enjoy” many indulgances…no refined flour, sugar, I avoid chemicals, teflon, aluminum, plastic—all those things in the environment that are supposed to be bad for you; and yet, it did me no good.

I guess that’s what I’m feeling mad at. I might as well have done drugs, and drank, and smoked, and eaten fast food, and so forth, and then at least I’d have the ability to say “I’m going to make some changes” and feel like I was in control of my health. Right now, I feel like: what possibly could I change to protect my health now? There’s nothing left!

Ah well…I’ll know more friday, I guess.

Thanks for the kind words, mahinui!

Jul 22, 11:14AM PDT | Parent | Respond to this 1 cheer

mahinui It's all happening...all of it!

have you read Lance Armstrong's book?

“It’s not About the Bike”??

He was not exactly a booze it up body abuser when he got cancer, and he made substantive dietary changes after he was diagnosed.

I strongly recommend the book to you, as it can only help you find that elusive attitude boost you so need right now.

You have MS too? This is NOT FAIR!

There may be anti-oxidants you can add in- the grocery stores sell acai juice now. I drank that stuff three times a day to get well, and it had a big effect. Also, something called cell food from the health food store. I can actually feel the difference on days I use it versus other days. So now I always use it. Lots and lots of vitamin C.

Research the heck out of your very specific cancer, and pick out those very few things you don’t have in your diet now and add them in. Blue green algae. Extra omega 3s – krill oil. Blueberries by the handful.

There is more left than you know yet. There has to be!!!!

Jul 22, 10:01PM PDT | Thread | Respond to this 1 cheer

A Girl in the Curl is appreciating the little patch of sunlight shining through the blind

Oh, I know...

last night, I went back to work and admitted a patient from the ER that the MDs just couldn’t figure out what was wrong with him. From 3:30 to about 6 we struggled with getting his pressure up, he was on about 12 IVs, 4 to maintain his pressure, one for his acidosis, two for sedation…etc.

He ended up dying at around 8 am, and his sister had showed up around 6 and contradicted the fact that he denied doing drugs.

he smoked meth daily, and he denied this in the ER and the MDs just couldn’t figure out what was wrong with him.

At about 6 am, his heart rate looked really funky and I called the house doc and said “come look at him” and she said “nah, he’s in Atrial fibrilation, of course his heart rate is irregular”

Well, half an hour later, we were coding him, trying to keep him alive—he ended up dying after a successful code. He wasn’t going to make it.

he was 46.

I thought to myself—how is this fair…this guy just pissed his life away, and here’s me, eating all organic food, and watching what I eat, and how much of it, and how it’s prepared…

Life’s funny some times.

I thought to myself “death is everywhere around me lately”

I should have told you about the guy in the room next door that had a heart attack during a sexual affair he was having at work.

They brought him in and the story was he just collapsed and they heard it and found him down.

Turns out a urine sample we sent was full of semen.

So, these guys are going to the ICU after having sex, and doing drugs…what a crazy way to go, eh?

Thanks for the advice, M.
I have read Lance’s book (I bought it for my mom) and have re-read it in two days time, lately…

He had a very treatable form of cancer, and he was a celebrity, with so many people implementing things for him and such.

He would have died withut treatment for sure (as anyone would) but reading it made me think about his celebrity in that he must have had hundreds of people, doctors who were big fans of his writing him to offer up treatment, etc.

Jul 23, 12:31PM PDT | Thread | Respond to this

Kitty wonders how much Lady M can possibly spit up.

Have you seen Crazy Sexy Cancer?

Jul 23, 12:42PM PDT | Thread | Respond to this

A Girl in the Curl is appreciating the little patch of sunlight shining through the blind

I have

I have to say it seemed rather offensive, and the reviewers are mostly mad at the writer.

To think that most people have to pull on a wig, and throw up at work from chemo because they can’t afford to stay home, and have no medical leave left, and this author is just saying “oh, I went and splurged on a pair of boots” or any other things that most people undergoing treatments could ill-aford, was offensive to some.

One lady wrote that she didn’t have this marvelous boyfriend waiting to do all these marvelous life-affirming thinsgs for her, and so the book made her feel inadequte even in this.

I didn’t think it was all that bad, and the author does have a damned good fighter attitude (which was her point, I think) to not taking things lying down.

Since I’m a nurse, I think I’m well informed, and I know how to research things, and make an informed decision—but I also know the reality (sadly) where most people who get a diagnosis like this don’t.

Not knowing is sometimes better. This is why physicians die of cancer when lay-people live on and on, I think.

I do plan on taking a road trip when I start feeling better, and before I return to work.

My whole life is in the toilet, as far as plans and what I was doing…and it’s going to be hard to get it back. My school probably won’t hold my spot, and getting into another program will be tough, if impossible…so I may be trapped in this miserable job I was about a week or two from resigning from.

Life is so funny sometimes.
Yesterday, I was shopping online for eyebrows.

You read that right. Eyebrows that stick on, like a phoney mustache, because though I was ready for my hair to all fall out, I wasn’t expecting that my eyelashes and eyebrows would do the same.

My insurance won’t cover eyebrows…that’s an out of pocket.

(sigh)

Jul 23, 12:53PM PDT | Thread | Respond to this 1 cheer

You can have mine. - ello

mahinui It's all happening...all of it!

you are sounding a bit more upbeat

I checked your morale-o-meter and it looks like you did notch it up a beat.

Reading Lance’s book, I sort of got that he sought out his own cure. Maybe you are right on the button and he got a lot of offers. Even at that, he still sorted it through. Didn’t he reject the initial recommendations of his doctors and seek treatment from someone who was confident he could bring him out of it?

Jul 23, 04:04PM PDT | Thread | Respond to this

A Girl in the Curl is appreciating the little patch of sunlight shining through the blind

I think so

There were a couple places that he had been seen, and he had to make a decision about treatments.

The place he ended up going to was the one that had the most aggressive treatment, they actually told him they would kill him with chemo, and then bring him back.

It’s all bad, the treatment. You just have to pick which treatment form you feel best about, or least bad, I guess.

Jul 26, 01:47PM PDT | Respond to this 2 cheers

Comments:

yeah (sigh)

have you read Lance Armstrong's book?

Oh, I know...

I have

you are sounding a bit more upbeat

I think so

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