Posts Tagged ‘San Francisco’

Ann’s Diary: About Being Bald

To all my people:

When I wrote ‘pink tips’ it was to help a person dealing with cancer: my fifty tips on what helped get me through.  Since it was published two years ago I’ve been told that there’s another category of folks who get something out of ‘pink tips’: everyone else.

Whether you are  dealing with disease, a friend of the person dealing with any disease, or whether you are dealing with something traumatic of your own that has nothing to do with disease, people tell me ‘pink tips‘ helps. Cool deal. I am humbled, and honored.

Going through my latest hell of losing my hair to the chemotherapy associated with metastatic breast cancer in brain/liver/lung, I flipped through my own book this week.  I know I wrote the thing but honestly I’m going through hell and I need some help.  This Ann Murray Paige lady might know something I’ve forgotten.

Sure enough, ‘pink tip’ no. 47 stared me in the face. GPS Yourself.  What that means is find out where you are in your mind on any given day and go from there. In trauma, some days you’ll be down and out, other days you’ll come out swinging. Find out whether you’re sinking or swinging and help yourself get through it.

So I did. And here’s what you need to know about me this days: I am bald, and I hate it.

I don’t love being bald.  I have to be bald.  I resent being bald.  It’s not a “new do” or a cool fashion style.  It’s a robbery.

To see me bald,  you may feel like you have to make me feel better about it all. But you don’t. I want you to treat me the way you always do–like amazing, fantastic, supportive, kick-ass friends who know I’m riding this bucking bronco and holding on for dear life and that it may look easy but it’s hard as hell.

There’s more. I will be a bit off center for a while as I get used to all this bull shit.  And I just want you to be aware of what’s happening so that I don’t mistakenly confuse, insult or otherwise hurt your feelings. I have been getting a lot of “You’re beautiful bald!” and “You have the best-shaped head EVER!” Thanks, but right now I would rather have a healthy body and hair than a good-looking skull.

To everyone in my corner: I love you and I do not hold anything against anyone who gaffs or says something inappropriate as they reach for anything to say. I know this is awkward for all of us.  I get that.

But if you see me around with my hairless head covered in a cancer chapeau with my ears sticking out a-la “Herbie-doesn’t-like-to-make-toys,” just give me a hug.

That’s what I need right now.

Posted April 6th, 2013 by
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Ann’s Diary: Boston Irish

So here’s something I didn’t think I’d be saying today: I have cancer in my brain and in my liver.

I can hardly believe it. I went for a scan last week and there it was. My doctor was stunned about the brain.  I’d been having some trouble with my lungs so that wasn’t a surprise that it showed up a little bigger there….but the liver?

The brain?

WTF?

Gang, all I can tell you is this: I am pissed off. And I am originally from Boston, Massachusetts and I am of Irish decent.  Are you getting me?  (Or as said in “Southie”, do ya folly me?) When you’re Boston Irish and you’re mad and you’re ready to fight, you don’t lose; the other guy does.

I’ll write more when I can find the words.  For now, just send up your best most positive most strengthening thoughts, prayers and love to me.

It will make all the difference in my Boston-Irish-fighting cancer world.

Posted March 6th, 2013 by
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Ann’s Diary: Red Carpet Evening

Many of my friends watched The Oscars.  I didn’t, and I don’t.  I used to watch when I knew what the movies were and who the celebrities are–but lately I never see movies and I don’t watch any television and I have no idea who’s on the cover of People Magazine.

Cancer ruined it for me.  There; easy to blame someone who’s not in the room–or can’t defend itself.  Finally I can pull a fast one on cancer–Lord knows it’s pulled a fast one on me.

What I mean by “cancer ruined it for me” is that ever since I got sick, I can’t watch anything over-the-top. For example: I can’t see people murdered–even fake people, like in CSI; or lied to, cheated, disillusioned, kidnapped, drowned–and God forbid anybody is dying of a disease. I also can’t watch “reality” television, people pretending to survive in the jungle, celebrity “news” and the like–basically anything that reeks of excess: money, glamour, violence, sadness, suspense or fear. Maybe because I have enough of those last three in my world as it is, and the other stuff just doesn’t do anything for me.

And I don’t think this is natural or normal for someone with metastatic disease—I assume many fighters watch fantasy, “reality”, the Oscars, whatever–and are just fine.  And good for them. I think I’m the freak. Something like the Oscars, while much of it smoke and mirrors, is all good fun.  And that line makes me think of the Wicked Witch when she told Dorothy, all in good time, my pretty, all in good time…

And maybe all in good time I’ll care about watching the Oscars again. And the movies. Or reading books where someone has something horrible happen to them and has to dig themselves out of an emotional-wreck of a hole. But not now. Not today. And likely not tomorrow.  Maybe I just will never again be able to watch someone else’s fairytale life while I’m living such a nightmare.

On Oscar night I did not see anybody get their just rewards for work well done on the silver screen. I didn’t see any pretty gowns or gorgeous tuxedos, and there was no red carpet for anyone to walk in my world. But I did something fun just the same. I snuggled up with my daughter  in my bed and we read a book. No high drama, no good outfits and no high heels–no lights, camera or action, either.

But to the Academy of Ann, it was an award-winning night just the same.

Posted March 6th, 2013 by
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Ann’s Diary: You Think Boobs Mean Beauty? Think Again.

So don’t stop believing, sisters–

Ann Murray Paige – FIT House Member of the Month! from Ara Arbabzadeh on Vimeo.

Posted January 26th, 2012 by
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Ann’s Diary: Great Labs

Fresh off my high from attending The Global Leaders Healthcare Forum in SF yesterday, I woke up to an email from my doctor;

SUBJECT: Great Labs

Yes!  My tumor markers, which went up in November, have continued to go down.  This time by about 10 points–which wouldn’t be such a big deal except that they’d shot up 50 points last fall and I was floored and depressed during the holidays.  Now they’ve gone back down, about 40 points last month, and today–about 10 more points–if  you do that Math–and please do because I s*ck at Math–this means I’ve gotten back what I ‘lost’ around Thanksgiving time and I’m back on the “Beat Cancer’s Butt” trail.

What’s the reason?  The cause?  I don’t know–I really don’t.  Yet I have to assume that the drug Zometa is at the heart of it.  That’s the drug I get dripped into me each month at the Chemotherapy Infusion Center at the hospital–but technically Zometa isn’t chemo.  It’s a bone strengthener.  I’d stopped it in October due to a side effect and that next month my tumor markers shot up.

So why is it helping me?  Who knows.  It could be that it sends out some message as it’s strengthening my bones against any infiltration of the breast cancer now pounding my left lung, saying “and don’t go over there, either.”  Either way, it’s working for me–this patient, this mother, daughter, wife, sister, cousin, friend–it’s apparently keeping me alive.

Which brings me back to the health conference I blogged from yesterday, and the big global healthcare question I took away from it all:  what happens when the price of a drug is deemed too expensive to keep on the shelf, yet that same drug is deemed critical to keeping someone alive for a few months, a few years, or more?  Who gets to decided what the cut-off day is for the financial effectiveness versus the human one?

We don’t know yet–though for the uninsured that day has already come.  Yet for the rest of us–those who have insurance, pay our bills, etc.–we are potentially in that same “can I get the meds?” boat if one day an entity bigger than we are decides that a drug is ‘too expensive’ to give out.  Let’s take Zometa for example:  what if….

I don’t know.  I just know that we’d all  best be paying attention to who, what, where, and when they–whomever they are–decide.

Posted January 11th, 2012 by
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