Posts Tagged ‘breast cancer advice’

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: Yoga Miss

So I didn’t make it to yoga today, like I’d hoped….but not for the reason you might think.

I didn’t go because I was in the company of two amazing friends who’d traveled thousands of miles between them to come visit me and bring me their best wishes of health and support. And I was blown away not just be their clear desire to help me feel better amid this metastatic breast cancer bull sh-t; but also by how wonderful I felt just being in their midst.

Chris, Jen and I grew up together; back in the 1970′s when hanging out meant bell bottoms, Nikes, Danskins and spoons-in-dirt for backyard toys. We had no internet, no cell phones, no texting, no computers–hell, I barely had a bike, since I had to wait for a sibling to outgrow his or hers until I got it.

We did stuff on weekends that was all our own: we made up plays.  We acted out shows.  We did a rousing rendition of “Three Billy Goats Gruff” that knocked the Neighborhood Labor Day Picnic of 1972 on its backside.  We marched in town parades dressed like colonials in 1976. We bought lime rickeys at the Center Dairy Bar and watched “Creature Double Feature” on rainy Saturday afternoons with our hands in front of our faces in case something freaked us out.

We shared schools, snacks, pets and parties. We went trick-or-treating dressed like tigers, gypsies, ghosts and maids. Our parents threw cocktail parties that we went to–because they were out in the collective back yard with the sun shining and we could play and listen and laugh along with the grown ups.

We share memories: I remember the night their grandfather died on Christmas Eve.  I went to the junior prom with Chris–wearing his mother’s dress. I had my first hair style “bun” made my Jen’s mom. And I still can’t watch “Chitty Chitty Bang Bang” because of the creepy child-catcher hide-and-seek game that we made up and played in my parents’ dark basement.

As adults, we grew up and away from each other–only connecting on random home-for-the-holidays when one of us would be out walking and see the other one coming from a distance. The “oh my word, how ARE you?” would open up the back story of our childhood and eventually we’d be talking old school, thrown backwards 2 or 3 decades to the days when knocking on each other’s back doors’ was the beginning of a weekend’s worth of non-electronic adventure.

A few weeks ago when I got Chris’s text I thought I had been mis-texted:  it said, “Jen and I want to come and visit you on April 1.  And this is not a joke!” I looked at the number a few times before I realized it was my old pal, visiting his sister and wanting both of them to come see me.  I couldn’t believe the effort they wanted to make.  I was humbled.  And happy.  And having been down cancer’s road once already I knew enough not to put up a fuss.  ”Yes!”  I quickly typed back.

And so they came.

Which is why I was not in yoga today.  I was not down-dogging myself into a peaceful zen room of hope and love this morning as I face my new cancer battle.  But I was in an equally wonderful place: ensconced in a comfort zone that comes from the good fortune of growing up on a street in a small town with kids whom I always loved to be with and who always loved to be with me…

..and apparently, still do.

 

 

Posted April 3rd, 2013 by
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Ann’s Diary: Isn’t it Ironic

This morning my friend came up to me and said, “I’m pregnant.” My mouth dropped open.

She’s around my age–late 40′s I would guess–and she has two kids almost grown. She wasn’t expecting to be….expecting.  I stood there gaping as she said… “all the nausea I’ve been having?  It’s the pregnancy.” I couldn’t say a word. NOT a word.  Boy was her life about to change…

“April Fools!” she quipped, laughing and rolling her eyes.  ”I’m NOT pregnant!” WHOOAAA did she get me!  I was already buying her a shower gift in my mind–a year’s supply of Geritol and Ibuprofen.

But the April-fooling was not over for me.  I went home after working out to take my usual shower before I headed to Monday chemotherapy for metastatic liver/lung/brain breast cancer. As I shampooed I noticed a tangle in my hair.  When I pulled it to loosen it, the entire clump of hair came off into my hands. My hair is falling out; chemotherapy style.

I am sure I remember doctors telling me  this wouldn’t happen, since this is a lower dose of chemo weekly than I had the first time my hair fell out in 2004. I even texted my husband when out of the shower to ask him and he confirmed that a few doctors had indeed said my hair will thin but not fall out entirely. So I checked with my oncologist but she confirmed it will fall out.  There was no use complaining. I either heard it wrong or she said it wrong. Now it is what it is.

I’m gonna be bald again.

I know losing my hair is not the be-all end-all.  I’ve done it already, I remember.  What I do know is that without hair I will look sick.  And THAT ladies and gentlemen, blows.

The best thing so far in this diagnosis is that I don’t look sick.  People can’t believe I’ve really got cancer.  That is awesome for me.  It lifts me up. It helps me stay strong.  I love being the physical representation of the middle finger to metastatic breast cancer.  Here, you big bully, look at me;  I got this–and YOU DON’T.

But as a bald woman with no eyebrows or eyelashes, I will be unmistakably SICK to the world. Sh-t.

What news to digest on this the National Trick Day of the year. The irony is not lost on me–or my hair.

 

Posted April 1st, 2013 by
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Ann’s Diary: Yoga Fail

I remember the day news anchor Katie Couric looked into the camera on the day she’d returned to work after losing her husband to colon cancer and said something like this:

“And to all of you who endure inconsolable loss and stand gaping as the world keeps moving on without you I say this: I understand.”

That was 15 years ago, and today not only do I remember those words, I live them.

This morning I was ready for yoga.  I haven’t done it since the “big news” of my brain/liver/lung metastatic breast cancer 3 weeks ago–mostly because I haven’t had the time. I was on that treadmill of “what do I do NOW” and busy getting it done. Now that I’ve done the brain radiation, the port, and am on chemotherapy round 2, I was ready this morning to get back to 9 a.m. yoga.

But driving there, I got in a tiff with someone. Then I got bad news about stuff on the homefront. NOT medical. But personal stuff–you know, in the running-of-the-house-and-family category that encompasses but is not limited to bills, kids grades, broken appliances, etc.  Or as I like to call it, the” we-know-it-doesn’t-matter-in-the-scheme-of-things-but-day-to-day-you-can’t-avoid-it-in-real-life”–

until you get a diagnosis like mine and that entire category of life blows up.  Paying off a credit card bill is not as important to me now as planning a family vacation–which puts yet one more emotional divider between me and the non-sick world.

So back to yoga–

there I was, trying to get into the class, but dealing with this “day-to-day” junk that was important and not important at the very same time. The yoga instructor said “grow your breath” but mine stuck in my throat.  She said “jump to the top of the mat” and my feet dragged like logs. “Think of someone you need to forgive” but there were too many choices in my head and I was the biggest one. Then I started feeling sorry for myself. That is the classic sign for me to abort the mission. If I’m going down that road I know I’m losing ground. I rolled up my mat and left the class. No yoga today.

I had prepared myself for possibly leaving yoga but not for emotional reasons. I thought the chemo might make it tough to stand the high heat in there. But It was heat of another kind–the unexpected–”the head trip of life as a woman who may or may not see her kids graduate high school”–that’s another way to put it–that got me. I drove away cursing.  I had so wanted to do yoga.

But as Katie Couric so prolifically said to “me” all those years ago, regardless of my situation life will go on around me–even as my world spins in and out of control.  Some days I’ll handle that motion, and other days I won’t.

Here’s one thing I know: there’s a yoga class next Wednesday at 9 a.m. with my name all over it.

Posted March 27th, 2013 by
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Ann’s Diary: Advice From An Angel

I was just sitting at the grave of my friends’ son who died slipping off a ski lift chair just a year or so ago. He was 7.

I was at the cemetery because I’ve been feeling over the last 5 days that way too many people in my immediate world are assuming I’m going to die from this latest twist in my metastatic breast cancer battle; in my lungs but also now in my liver and brain.

In the 5 days since I found out this news I’ve had my ups and downs, picking at the flower of fear like the daisy you hope will tell you someone likes you: “He loves me, he loves me not, he loves me, he loves me not” or in my case, “I’ll live, I’ll die, I’ll live, I’ll die..” For me, I always land on the good petal–the one where I do well with treatment and look forward to Christmas dinner with my family and friends.

But over the last 24 hours I’ve been knocked to the emotional floor by folks who are my friends who are thinking the bad petal is the given: that I’m not gonna do this.  That I am gonna die–Like soon. As if I’ve already been through the treatment and it’s failed. I gotta tell you, they’re freaking me out.

So why did I go to a graveyard?

Because whenever I walk across the dewy grass to the cemetery spot where JH was laid to rest in December of 2011, I feel a strange sensation that’s both horrible and comforting: I feel like he understands my position.  Who else but a little child stolen from life after only 7 years could, if he were here, look at me and say “believe me, Mrs. Paige, I get it.  This stinks. Makes no sense. I get you.”

In my mind  if not in my soul, right now I desperately need to be with someone who knows life isn’t fair and doesn’t need to say that to me: he represents it.  And somehow for me when I stand there and weep to his gravestone– a gorgeous block-shaped, buffed, black piece of marble with the etchings of a bear and skis on it, I feel supported in my confusion by a little angel who in the 7? 10? seconds it likely took for his life to fall from the sky may have very well felt the exact way I do: “What the heck is going on?”

I actually spoke those words out loud today as I stood rearranging the flowers by his carved name, crying fearful tears. I was mumbling like mad, “Do these  people around me know something I don’t? Am I a fool to believe I can do this?” I could see his little face captured in his last school photo smiling to me like “Yeah, who knows. Isn’t this rich? Who would have thought life would put us here like this?”

I can’t define it any more than to say that having someone–even in spirit–make me feel like I’m not crazy, nor am I dead (yet)– lent me relief that I desperately needed.  And JH knows more than my feeble brain can tell me because I’m still just a human while he’s now part of God’s world—the Infinite Universe- where man and Science and Journals of Medicine don’t hold the answers to why people die.

Now JH knows why we die, when we die–the “real” reasons, not the “because the meds didn’t work” or “because he ate too much fried food”. Or my favorite, the “everything-happens-for-a-reason” earthly bullshit answer everyone gives when they have no other explanation of the frightening realites of how cruel life can be.  Let’s face it, everything happens for a reason until your 2nd grader falls to his death skiing on a blue-skyed, bright sunny day:  after that, nothing makes sense or happens for a reason in this world ever again.

I don’t want anyone to be standing at my grave weeping to me in a year; but at the same time I have to realize that I have no control over that. And thought hard to swallow I have no control over  what people are saying and fearing about my cancer now. I do know this: that may be their reality, but I can’t let it be mine.

What I do have control over is my attitude. I’ll have good days and bad days, that I realize. But I control one thing and one thing only: my outlook.

As I left JH today, I kissed my hand and laid it on top of  his gravestone. And I couldn’t stop myself, still frightened and insecure about my future, to out loud ask him one more thing–  ”Is it over for me, is this it, is this the end?”

Like a whisper in my ear I felt an answer inside me that I had been feeling a few days ago but recent fear had squashed it down to nothing:

“Who knows. Nothing’s a guarantee. No one knows yes, no one knows no.” As I took one last look at that bear and skis on JH’s gravestone I heard one last thing: “But what else can you do but try?”

 

 

 

Posted March 10th, 2013 by
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