A Girl in the Curl is making some tough decisions

NOT HAVE CANCER (read all 15 entries…)
FEAR 11 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.



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I've never been where you are.

I don’t have any way to understand how you feel. I don’t have any way to connect with the fears that are now with you every second of the day and night. I read your words and feel some of what you are feeling oozing thru the verbiage, but those are just hints.

And even worse than that is that I can’t do one damned thing to help you. There is nothing I can say, nothing I can do, no example I can give, no encouragement that would mean a fucking thing to you.

You have to ride this ugly roller coaster yourself, and I have to watch. It’s just the way it is.

But I’d hug you hard to me and kiss you on the side of your head and let you tell me how horrid and unfair all this is and not worry about my chest getting wet with your tears…but…really…I can’t do that either, can I?

All I can do, it seems, is sit here and hope for the best for you…and what good does that do you?

I’m so sorry, Chewie.

A Girl in the Curl is making some tough decisions

more than you know

It’s not true you can’t do anything. You’re feeling helpless, like I am, like everyone who knows me does, and for that I feel sorry to worry everyone.

It breaks my heart how much this is for everyone…and my dumping all my self-pity here…that just sucks.

But, I’m awake at night, by myself. My mom did say the nights were the worst, the sleepless nights. The stuff your mind will tell you to scare the crap out of you.

Unc, you’re a fabulous friend, and I do adore you—knowing you’re pulling for me means so much. Thank you.

Virtual tears or real tears, letting me cry them and wipe them for me…that’s huge.

I love ya.

Lisa, don't you DARE apologize...

...for coming here and venting your fear, frustration, anger…anything...with us.

There is really nothing in a brick and mortar fashion that any of us can do for you. But we can listen to you, try and understand what you’re going thru, and at least try to show you we are concerned and love you. It’s what we can do, and it’s little enough.

A Girl in the Curl is making some tough decisions

if you only knew

how touching it is to me, this sincere outpouring of kindness from the 43 community…that’s not nothing, Unc.

I know that it probably feels like nothing, because it costs nothing, but it’s energy will help me, it will. (as an aside, there was a study about people who were prayed for, versus a control group, who were not prayed for, and the prayed for group did better—it’s inexplicable, and the scientists were unable to explain it…the groups were made up of people who were not praying folks…so there might be something to it)

In any case, I feel the love, and I do feel bad about how rotten this news is; I’m not unaware of how heavy it is, and I hate to be a wet blanket.

I just found out my insurance kinda sucks for any hospital stays and “outpatient procedures” so, it was ok for check ups and follow ups and lab analyses…but surgery and hospital visits are going to start adding up…this is how Americans end up losing everything.

for example: I have to pay for 30% of my “out patient procedures” and $500/day for hospital stay up to three days stay (after that, they cover the whole amount)

So already, I’m worried that these things are going to drive my decision when selecting a plan. They may even not cover a mastectomy and reconstruction; looking at it as “elective” if I could have survived by just hacking out the lump and having radiation.

oh, I dunno…I just feel bad ranting on about this…I hate heavy news, even when it’s my own.

Thank you for your amazing support, my dear. It means more than any dollar amount you could imagine.

The fucking insurance companies...

...should be “burnt to the ground.” A more disgusting and reprehensible group of scum bag sonsabitches one would be hard-pressed to find. If ANY industry begs for nationalization, that’s it.

So, Chewie, what’s happening now? Have you begun any sort of treatment yet? I suppose you have. Surgery is on the horizon when?

Jesus, Chewie, my fingers ache just typing this shit!

Mikhail Nikolayevich If Heaven made someone, earth can find some use for them

So

sorry to hear this.

A Girl in the Curl is making some tough decisions

Me too

I was so sure it was absolutely nothing…I wasn’t even nervous.

The results took me completely by surprise—surely, my life can’t be THAT bad, can it?

Oh, it can.
And it hasn’t even really begun yet.

I’m such a chicken (sorry)

Thanks for the support—it’s hard to find words to say that sound ‘good’

hundredwaters moving on, moving up~ spiraling into joy ~

I'm curious

did you feel a lump? did anything show on the mammogram? I have a lump that I’ve been checking for six years now. Six years ago I did a mammogram and ultrasound that were both negative. I’m due for more testing and maybe a needle biopsy. You can imagine that reading your post has sort of frighteningly reminded me I need to keep tabs on this annoying little companion.
In the meantime, I think it is great you are sharing your experience here with this family.

A Girl in the Curl is making some tough decisions

please

PUSH to get that lump checked!
Only because of my mom having died a few yars ago of breast cancer did anyone check it out—I kept hearing “it seems like nothing…it’s probably nothing…I’m not impressed…likely nothing” but because of this family history, I’m here, talking about cancer and not “lump that I live with.”

I was sure it was nothing, it was painful, especially just before my menstural cycle, so I knew it was hormonal, and because it was painful, I thought—it’s not cancer; cancer isn’t painful.

Well, there you go…never say never.

I have a smallish lump that I noticed about a year ago, and should have had it checked then, but putting it off and appointments being always a month away, and so forth (plus, me working nights and having hard time scheduling) all pushed this forward. I wish I had had this looked at a year ago.

Mammogram and ultrasound showed lump, but they were suspicious because it didn’t look “cyst-like” what that means, I’ve no idea, so they did the biopsy.

I wish I could turn the clock back now and I’d say not even do the biopsy (there’s a danger of somemthing called “seeding” where cancer cells are loosed among healthy tissue. For example, during sugery, a surgeon will remove the lump using one set of instruments, and then switch to clean tools, because they found that cancer cells were sticking to the surgical instruments, and those cells would be reintroduced into remaining healthy tissue, and a new tumor would start…hence “seeding”) SO I wish that I had just had the lumpectomy instead of doing the biopsy…the procedure might have (though they deny it, even though I asked before the biopsy) introduced cells as it pushed thru the lump and into healthy tissue.

it keeps me up at night, now. I wish I’d just had the lump taken out.

Good luck to you—please get this looked at ASAP…the more time goes by the worse your prognosis is if it is something to worry about. The worse the surgery is, and the worse the chemo etc…so I hear.

LL has an empty space beside her, where Matty belongs.

((((((((((((((((HUGS))))))))))))))))

Benji is very happy

Lisa.

This is the bravest most honest thing I have ever had the honour to read.

I have just spent ages trying to put down what I want to say, and I keep deleting it, not that it matters, you know where I am.

A Girl in the Curl is making some tough decisions

I know, Benji

you don’t have to say anything…I know.

I’m just ranting—part of the problem of being awake all night, and scared witless. I just write whatever I’m thinking (sigh)

It’s an abyss right now in my head.

hundredwaters moving on, moving up~ spiraling into joy ~

go ahead and rant

it seems appropriate right now!

mahinui aloha from the Big Island

Is it true anger at the disease

is part of the cure?

or part of the process?

When I read your words, I’m angry too. And I want you to love the rest of your life. So I am sending you strong wishes for thousands of truly excellent days ahead. Summery sweet days of ocean waves and light breezes, feeling good inside your skin.

No more cancer.

A Girl in the Curl is making some tough decisions

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!

mahinui aloha from the Big Island

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!!!!

A Girl in the Curl is making some tough decisions

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.

Have you seen Crazy Sexy Cancer?

mahinui aloha from the Big Island

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?

calypte desperately seeking sparkle

you can't live like that

You survive. You’re here. You didn’t get hit by a bus on your way to work, y’know?

I’ve been here for 10 years, had another brush, and then another 6 years since. I could be here for another 30, 40… or get hit by that bus next week. It’s all a gamble, but you just have to enjoy the meantime – and that applies to everyone, survivor or otherwise.

(((((((((hugs)))))))

A Girl in the Curl is making some tough decisions

I know

And I’m very sorry—I don’t mean to undermine or scare other survivors or their survivorship.

My own mom would probably have raised her voice if she heard me talking like this (she never raised her voice)

You can’t live like that. It’s true. I think, being a nurse, and having had this happen to my mom and brother, I have skipped the first year or two of what most people diagnosed go thru, and went right to the year anniversary—the “now what?” and “when?” stage.

Nothing I read definatively tells me anything—meta analyses of studies done on longevity, prognoses, diets, treatments, pre-emptive measures, everything…and nothing is directly pointing me to “cure”

I guess I’m just in the anger/self-pity stage of grief…I’m dying for friday to come so I can go to UCSF and talk to someone…I’m going crazy just trapped in my own head.

Thanks for the kind words and support, Calypte. I especially appreciate that you’ve been there, and have done well—I need as many of those examples as I can find.

heaveemetal If you could make a difference in someones life...would you?

:(...

All the love I can send your way Lisa…

A Girl in the Curl is making some tough decisions

Thanks, Heav

:(

I know how much this is going to be stirring you in the beginning.

Cancer is something I have been surrounded with in my life.

I think, as tragic as it is, it brings out the most phenomenal qualities in a person.

I think you will be just fine.

I really do.

Todd Schoonover Should really be sleeping now.

You Amaze Me

I am so saddened that this has entered your life. I applaud you for your honesty and your openness about what is going on. If there’s anything I can do, just tell me.

A Girl in the Curl is making some tough decisions

Thanks, Todd

I really just need to vent, I guess. I struggled with not saying anything, but then everyone would think I was in school, moving ahead with my life, and I will in fact be very sick, and struggling thru this—I’ll need all the honesty I can muster in order to be able to vent…

I appreciate the kind words.
Thank you.

Waynesworld likes summertime...

{{{{{{{Girl}}}}}}}

Thinking about you today.

I know that the

wild energy here is exactly what your body will harness in its healing. Let ‘er rip, m’dear, and know there’s a bunch of us out here whose tongues may be tied but whose hearts are silently articulating love for you.

praying for your health & peace of mind.

(This comment was deleted.)

A Girl in the Curl is making some tough decisions

Thanks, Shelly

I wish I were a tough broad!
it’s all talk :(

(This comment was deleted.)

A Girl in the Curl is making some tough decisions

Kicking ass...

taking names…

Kicking ass…
Taking names….

Got it.

Thanks Shelly ;)

I second the notion...

that Shelly and Unc and others have shared. You have friends here. We care. You, of all people, know the value of these friendships. It can change the course of your history to unload some of that burden here.

At least you’re not going through this at Bard Hall.

humor is the best medicine, I was told … but not by an internist

{{hugs}}

A Girl in the Curl is making some tough decisions

Hahah!

Thanks, Bill.
I thought that too—it could always be worse, I could be in New York.

The sad thing, is that I had sent the deposit on the studio apartment in the Georgian for fall.

Definitely a step up from Bard. maybe several steps!

Now, even my plane ticket is going to go to waste…and I’ve got boxes full of stuff I was packing to send…and I was only a few weeks from resigning…

(sob!)

I wish I was there to remind you

how much you hated being an Architect so that at least we could laugh at something.

I’m a darned good ship driver, a pretty good cook, a fair pistol shot and can type most thing with out looking at the keyboard, but I don’t have a really good answer for you now.

Perhaps knowing we’re thinking about you and the struggle you’re going through is some help. Otherwise, I’m back to my plan B: something with pesto sauce and a cheap chianti.

And a guy in a funny (peculiar) sweater to serve it.

A Girl in the Curl is making some tough decisions

Thanks, Bill

:)

Jessy is having computer problems.

Girl in the Curl . . .

so very sorry to read this. I can only imagine the fear of the cancer coming back to haunt you sometime later.

But there are people for whom that second or third grim visitation never happens. My grandmother was a 22-year cancer survivor when she died of a heart attack. I have a friend who must be . . . just guessing here . . . a 30-year cancer survivor.

I devoutly hope that this will be the case for you, too.

I am also hoping that your insurance will cover breast reconstruction and whatever else you need.

I am not much of a praying person, Girl in the Curl, but for what it’s worth, I am praying for you.

A Girl in the Curl is making some tough decisions

Thanks, Jessy

I would be happy to die of a heart attack in my old age! I watched my own mom and brother go of cancer, and it’s not a pretty, easy death.

I won’t be having a mastectomy, but rather just the lump removed. This is my own decision since it’s small enough, I can chose to do this—if it were more advacned I wouldn’t have the choice.

For a while, I just wanted to get rid of my breasts thinking they were ticking time-bombs, but really, I think of them now as canaries in the coal mine…I’d rather have the cancer return to the breast and be treatable (with yearly mammograms and close monitoring) than have no breasts and have it come back in the chest wall, the surgical scar, or the lungs etc…it can and has happened to people from what I’ve been reading.

It’s the drugs that scare me and I haven’t decided about yet.

Thanks so much for the encouragement…I love to hear those long survival stories—my own mom lived 27 years, so I know it’s possible.

Thanks again :)


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