Saturday, September 18, 2010

I have a favor to ask all you lovely readers:

This is a hard request to make, but I have to make it now:

Please don't send me any information about the type of cancer I've got.

TM, I send thanks to you for the links you provided, and I'm not singling you out by any means; I've gotten more information than I knew existed about PLGA. I'm not mad, I'm just overwhelmed.

Right now there is not a damned thing I can do with more information. I realize that this cancer tends to metastasize in rare cases, and that things can really suck when it does. I understand that it sometimes comes back years after treatment. I know that a minority of patients die from it (though I don't intend in the least to be in that minority). All these things are things that the current research re- and re- and re-iterates. This is stuff I knew going in.

And I just. simply. cannot. handle it. Not now. Not when I've got two days before I see the oral surgeon, and then an unknown number of days before I see an oncologist and a head-and-neck surgeon, and not when the future is wide open with a number of possibilities, some of which are only marginally less horrible than others to contemplate.

I can handle being frightened. What I can't handle is sheer, cold terror, and that's what links and papers and abstracts do to me. Even knowing they're out there makes me more upset.

The strangest thing about this whole situation is that it still feels like it's happening to somebody else, even though the first coherent thought in my head this morning was, "I have cancer." I would like to preserve that somebody-else feeling for as long as I can, even if it's only for a couple of days.

Every cancer is as individual as the person it attacks. Remember that if you read about PLGA and get freaked out. Remember that I've always done weird stuff, and that this is no exception. Focus on the positive things that can come out of this, please, for my sake. Send all the good thoughts and prayers and wishes and hip-shakes you can muster, but please, don't send me any more links to the same Institute of Rare Diseases paper.

I am frightened. I feel very alone, notwithstanding the dozens of messages and emails and comments I've gotten in the last sixteen hours. I am scared for my life, and scared for my family, and scared for my friends. I would honestly like nothing better than to wake up and have this all have been the worst dream ever.

Please: this blog is a place where I can come and maybe not be so frightened for a little bit. I'd like it to stay a safe place, and I need your help to do that.

Thank you.


RehabNurse said...

There's never enough time to do all the nothing you want. ~Bill Watterson, Calvin and Hobbes

Go out and do nothing, or whatever strikes your fancy!

You deserve it!

MM9U said...

Be scared. Be worried. Do not think you are alone.

I've spent too much time in hospitals in the last five years, tending to one sick kid or another in my life.

Your blog helps to remind me that the people on the other side of the line are people.

When you start to question it all, just remember that much as I depended on your blog some days to keep me smiling when I walked back into a boy's room, you get to depend on the rest of us. You don't know most of us, may never meet any of us.

You have every right to be scared. You know too much not to be scared. But, trust me on this, you are not alone, I and the rest of your silent readers worry about you.

Jenn said...

I understand completely. My mother refused to read any articles or journals about the stuff when she was diagnosed. Everyone is different why scare yourself? Hang in there, it will get less scary and soon you will be able to laugh again!

Anonymous said...

The Serenity prayer is the only words of wisdom that I could possibly offer - it's what gotten me through all kinds of tight spots and scary spots in my life - and I am not even sure what kind of God I believe in! That, and breathe - helps to keep those ice cold fingers of terror from reaching too deep inside of you and squeezing your heart and lungs to bits. You are in my thoughts and prayers.

Penny Mitchell said...


Anonymous said...

I will do what I can, and leave you with advice from my mama - if anyone asks what they can do for you, be very specific, otherwise you will end up with a freezer full of poundcake! XXX C&L in Atlanta

Anonymous said...

Remind yourself what the "LG" stands for. That isn't some drug company hype, it is doctor talk for "not all that bad", or some such Latin saying.

Yes, it is "the big C", but a lame a$$ed version, and it *is* curable, and it *is not* going to kill you.

Sure, be scared, and know that feeling of being alone that anyone who has been in really deep poo has felt, but then get positive and remember it is "LOW GRADE" as in "Detroit was a low grade football team last year."

This is more of an interruption in your plans, a speed bump than anything else.

Next year at this time you'll look back at all this and wonder why you were so worried.

Hang in there, we're all pulling for you.

Anonymous said...

Serious hug. Wanna take a trip north and get seriously p*ssed on a dock?


bobbie said...

Hearing, and honoring you ~

Remember one thing ~ you are NOT your disease.

Andrea said...


Hey, are you still interested in doing one of those "distract me" topic posts? Cause I would love to hear about your take on Scotch, and how you choose what you drink. I just had an 18 year old Macallan single malt and it was heavenly. And I never drink scotch. Shit, I hardly ever drink anyway.

Thanks for being gracious enough to share your story with us. I feel really honored to be "let in" to all these gory details. This is what strikes me as so brave.

Anonymous said...

I'm so sorry - when you wrote earlier that you were perhaps going to research, but didn't know where to look... I'm so sorry I misunderstood.

messymimi said...

There is enough misinformation out there to choke an elephant, and since I don't know the difference, I wouldn't think of doing such a thing.

It's okay to be scared, too. I've been scared for my life more than once, and you can recover from it.

Jo said...

Anon at 9:11 am, please don't be sorry. I'm glad I got those links; I just probably shouldn't have looked at them first thing this morning. Later, when I have company and am feeling braver, I'll look again.

It comes and goes, the terror, and I never know when it's going to hit.

Crazed Nitwit said...

surreal as a Dali painting. know the feeling in different way. Hugs.

Anonymous said...

Hi Jo,

I've been reading your blog since I was a new nurse. I find your stories funny and inspiring as a nurse and medical student.Stay strong, you will beat this. Thank you for sharing your stories. :)

Anonymous said...

I can hardly imagine the terror. I'm not so good with words in writing here, but I am thinking of you.

TM (was me earlier, sorry, forgot to say)

Lurkette said...

With every post I identify with you a bit more. I also did not want information on my kind of cancer at the beginning. Later on, I became an expert, but at my pace, in my own time.

Good on you for asking for what you want on need. You rock!

Hugs, light and positive energy from Jerusalem. I'd offer the hip shaking, too, but seriously - you wouldn't want to see that.

Anonymous said...

sending you much love.

Anonymous said...

Never ever Google. Trust me. I am a nurse. Google will make you sick, will make you see the darkest side possible. You know this, right.

Am lighting a Cat'lic candle for you, or maybe a sneezing cat.

GuitarGirlRN said...


sam said...

I've "grown up" as a nurse these past 3 years with you/your advice. Stay strong, keep laughing (even if it hurts) and remember you are not defined by your disease. Thank you for all that you've done for my nursing practice/my life. Now go take care of yourself

Celeste said...

You know, I totally agree with this approach. The thing about cancer is that it seems pretty spelled out what to do about it; there are cancer doctors and cancer centers. It's not like some other things you can't even get diagnosed (BTDT) without going to the ends of the earth. I feel like if it ever happens to me, I will declare Dr. Google off-limits on my team and just deal with the local talent. From what I can tell, these people specialize in trying to find the treatment that will maximize your chances and minimize what you need to do to get them. I want to believe that these are the experts in cost-benefit ratios. I think even one of them who is looking right at you is better than 10 of them anywhere else.

Hugs to you, dear Jo.

greydogs said...

jo, sending you peace.
the terror is so lonely, but know we are all here with you, holding you up.

Carolyn RN in IA said...

I love coming here to read your blog, I have for close to 2 years now. I'm sorry to hear this has happened, I just finished tx for breast ca. I'll send ya a hip shake I guess hehehe, and I don't see anything wrong with a freezerful of poundcake! :)

Anonymous said...

I will try whenever possible to leave comments that are mostly irreverent and/or of the random and absurd. You may take the unicorns, hearts, rainbows and hugz as a given. Decide now what to say to those who meaning well, hint that x y or z diet, religion or lack of wheatgrass enemas is evidence of you fucking yourself over and by extension- them. It's astonishing how much blame the victim goes on (in general)with a cancer dx. You may have to be impolite. E in LA

Sunflower RN said...

Hi Jo,

I have been following your trails through this. Know that you have my best wishes through this journey. I know that I am a crappy patient, the kind of person that the nurses daydream about shoving out of the window. I don't think there is a nurse out there that isn't a bad patient. But despite that, we all do what needs to be done on our own terms. I got myself discharge early because I felt I could take better care of myself at home. You do what you need to do and stick to your guns.


shrimplate said...

I just heard "The Sorcerer's Apprentice" on the radio: Mickey smashes the broom and it metastasizes into hundreds of maniacal water-carriers until The Sorcerer sets things right again.

It is a parable of cancer.

You are *not* Mickey Mouse.


danielle said...

I wish I could be there with you to hold your hand - or whatever you need - at your appt and after...