On not reading my blog

There are two people I know who won't read my blog. So the good thing is that I can share this musing without fear of embarrassing either of them.

Last month my son turned to me and said, "Ma, I can't read your blog. I tried, but I just can't do it."  There was no need for him to explain; I understood exactly why.  It wasn't, Oh my mom has cancer and reading about it makes me too sad.  I could have been blogging about baking cakes, he'd still feel the same way. It's the voice.  He can't stand the artifice that is a component of any writing. No matter how true or real the expression, the written voice is crafted.  Nor does it matter how many people may say to me, "I really appreciate how honest you are on your blog!" For him, any presentation of me, no matter how genuine, ceases to be truly me because it is an expression.

The other person who can't read my blog is a close friend and colleague. Although he tried to explain to me his reasons, what it comes down to - I think - is, My good friend has cancer and reading about it makes me too sad.

Feeling

Yesterday I asked my sister, "How do you think I should be feeling?"

That's a pretty odd question.  In fact, I don't think that I've ever asked it before.  Why would I?  The answer that I would give to myself before I would even allow myself to ask it would be, "Who cares?"  Who cares how I should be feeling?  And, even more, who cares how anyone thinks I should be feeling?  Even an adored sibling.

But the thing is, yesterday I really wanted to know.  I had just had a meeting with my oncologist; we talked through the results of my latest scans and reviewed the directions for the latest step in my cancer journey.  I felt kind of numb.  Not sad.  Not especially excited to begin.  Not pessimistic.  Not not optimistic.  But not overly optimistic, at least nothing more than my pretty consistent expectation that cancer and I still have many (perhaps many, many) years ahead of us.

So there I was, eating dinner, digging for some feeling or another.  One thing that I recognized is that I'm a bit nervous about starting this drug, because you never know precisely what the side effects will be like.  Then I realized this: I'm going to start taking a drug, and I'm nervous about its side effects. Period.  It's a feeling, and a pretty normal one.  And it doesn't need to carry with it the prefix: I-have-cancer-and-I'm-gonna-die.  

So we ate a fabulous dinner and then we went to a fabulous show and I went home and went to bed. Just like a normal person who happens to have cancer.

Stuff

Shutterfly has offered to send me 101 pictures for free.  I do love pictures. And these are free. The question, of course, is what would I do with them?

I could make collages.

I could put them in frames.

I could shove them in the drawers that are already stuffed with pictures - ones that were taken before all of our pictures were online.

And so now I've spent quite a few minutes trying to decide what I'm going to do with something that I don't own, but that I could own; that I don't need, but that I might want.

Why does Shutterfly want to send me stuff?  And what's wrong with me if I don't want free stuff? My kids are much better at this than I.  For years I have kept their childhood tchochkes (knick-knacks, trinkets), and every so often I try to convince them to take them.  The truth is that they don't want them.  Well, actually, my daughter is happy knowing that her tchochkes are safely tucked away in boxes in our basement, but my son really has no interest in any of them.  (I still have some of his - maybe he'll change.)

Sometimes I have this same struggle when I think about making something - a quilt or a sculpey figurine (the perfect example of a tchochke). There's a responsibility that comes with making things. Something isn't in the world, and then you make it, and it is in the world.

Cancer connection?  I have to be sure to tell my kids that I am not my stuff.  That when I die, they shouldn't worry about not wanting to keep things that I have made or things that I have treasured. The parts of our relationship that they choose to carry forward in their own lives will be totally up to them.

Misnomer

I'm having some regrets about the name of this blog.  Not because if you Google "fuck cancer" you will see how utterly unoriginal it is.  And not because it's awkward to share the name in polite conversation.  But simply because that's often not the way that I feel.

Here are some other names that could have been contenders:

Sigh, Cancer: Often cancer is just an annoying life companion, like a little cousin who insists on following you everywhere.

Oh, right. Cancer: Sometimes I don't really think about having cancer at all, like when I'm teaching, especially.  Then something will come up that reminds me.

Wow, Cancer: Not a big happy "Wow!" like when you get served the most beautiful plate of food at a restaurant (#twfood). But still an awareness that this disease does bring its own gifts (#ilovemyblog).

You Goddam Shitface Fucking Asshole Cancer: That one kind of speaks for itself.

The big C's

Having a cold and cancer simultaneously is practically too much to even write about, but I'm gonna try.

First, there's the alliteration.  Pure poetic cruelty. One of these ailments should have been renamed.

Then there's the way that they're each other's opposite.  It's truly remarkable.  Consider:

Cold: Nobody cares. Honestly. Even the people who act like they care don't really care.
Cancer: Everybody cares. People whom you've never met will hear about you and care.

Cold: Countless over-the-counter remedies, plus some pretty solid ways of avoiding getting one in the first place.
Cancer: Not so much.

Cold: You feel like your dying, but you'll be fine.
Cancer: You may feel great, but you're fucking dying.

Hence the utter rottenness of having both. You feel like you're dying, and you are fucking dying. There are remedies available, but not the ones that you truly want and need.  People care about you, but they shouldn't, really, because it's only a cold for chrissakes.

All of that being said, the cold will pass, leaving you with empty Nyquil bottles and tissue boxes. And the cancer will stay, and continue to teach you how to live, if you let it.

Goodbye Termeer

And indeed, it has proven to be just a day - not overly big or small.  

I realize that I don't write that much about my cancer per se.  I just don't find it that interesting. Perhaps if I were a scientist I would be more likely to share the ins and outs of what my cells are up to.  Today, for example, I heard a woman in the next room over speaking with her doctor or nurse, and referring to CDG415 (or something like that).  "Hey!" I thought, "That's my letter/number combination, too!" The major difference was that she sounded like she knew what she was talking about, whereas I don't know whether that's the name of the gene or the drug.  All I know is that it came up in my conversation with Dr. Juric.  The other major difference is that if that is, indeed, the name of the drug, it will not be mine. Which brings us to the topic of today's post...

My trials have ended - at least for now.  We're going back to some good ol' tried and true chemotherapy.  Not the crazy throw-up-lose-your-hair-and-mind kind.  No, this is the new(ish) swallow-a-pill-and-keep-your-hands-and-feet-moisturized kind.

But forgive this post, because even as I write it, I'm already bored.  This trial or that, this chemo or that, etc.  Tomorrow, it's back to philosophizing.


Here's more information on my beloved Termeer Center, which definitely deserves its own post - coming soon, perhaps.

Big Day

Tomorrow will be a day.  Yes, that's certainly true, and hardly worth mentioning.  But I mention it here, because previously I would have said, "Tomorrow will be a big day."  Tomorrow I will meet with my adored Dr. Juric and he will share with me the results of my scans from yesterday.

The thing is, I'm not expecting great results.  Hence, the "big" in "big day."  "Big day" implies that the course of my life will be determined on that day.  "Big day" is like a mini Yom Kippur back when I used to believe that I had to say the name of every single person whom I loved, or else they would not be inscribed in the Book of Life for another year.  "Big day" means that I will leave the hospital in either hope or despair.  But as I sit here, I realize that tomorrow doesn't have to have any more power over me than any other day.

Like most of my very blessed days, tomorrow I will most likely wake up in a house with a person whom I love.  I will have food to eat, clothes to wear, a car to drive, and sick-days to use so that I still get paid even when I'm not working.  I will go to the hospital and find out what my cancer cells are up to.  We will discuss plans for foiling them, as we have been doing all along.  Then I will go home - and possibly get into my bed to recharge, or possibly not.  And so on.

Tomorrow will, in fact, just be a day.  I will have more information than I have today.  I will likely have feelings about that information.  But the me-ness at the center, and the blessings, remain.

A song that sums it up

Thanks, Woody Guthrie, for writing my post for today.
(and you can treat yourself to a listen here while you read the lyrics)

Gonna Get Through This World
Words by Woody Guthrie, 1945, Music by Lisa Gutkin (The Klezmatics), 2003

Well I’m gonna get through this world
The best I can, if I can
And I’m gonna get through this world
And I think I can.

Well I'm gonna work in this world
The best I can, if I can
And I’m gonna work in this world
And I think I can

I’m gonna get through this world
The best I can, if I can
I'm gonna work in this world
The best I can, if I can
I’m gonna get through this world
The best I can.

Well I’m gonna walk in this world
The best I can, if I can
And I’m gonna walk in this world
And I think I can.

I am gonna talk in this world
The best I can, if I can
And I’m gonna talk in this world
And I think I can. And I think I can.

I’m gonna get through this world
The best I can, if I can
I'm gonna work in this world
The best I can, if I can
I’m gonna get through this world
The best I can.

Well, I’m gonna clean up this world
The best I can, if I can
And I’m gonna clean up this world
And I think I can.

I'm gonna leave this world behind
The best I can, if I can
I'm gonna leave this world behind
And I think I can. And I think I can.

I’m gonna clean up this world

The best I can, if I can
I'm gonna leave this world behind
The best I can, if I can
I’m gonna get through this world
The best I can.

The bottom line

I am obsessed with this picture.

It's my daughter, walking on the beach in the Canary Islands.  I love the power of her stride.  I love that she seems to have everything that she needs in that bag.  I love that I don't know where she is walking from, or where she is walking to.  And I love that she clearly knows - even if it's nowhere in particular.  She knows why she is on the earth.  And most of all, I love that she is healthy and strong.

When I was diagnosed with breast cancer in 1999, my daughter was not yet five years old.  She didn't really know what to make of my cancer.  None of us really did.  She's very relational though - making sense of things by reaching out to people.  Once we were in line at the supermarket and when it was our turn to check out she turned to me and asked, "Mom, can I tell her?"  "Sure," I said.  She looked at the cashier and said, "My mom has cancer."  She has always known what she needs to do to help herself.

Anyway, the point of this flashback is that at that time, with two young children, I found myself searching for my bottom line.  The condition under which this cancer would really not be acceptable at all.  I assumed that the bottom line was death.  I mean, clearly, that would not work.  I had a five-year-old and an eight-year-old, and I had much more mothering to do.  Plus, their dad and I weren't together anymore, so how could I possibly leave them in the hands of my ex-husband and his wife?

And then I realized that I could.  Of course I could.  It would suck in the hugest way possible.  It would be traumatic.  They would be unbearably sad and confused.  But ultimately they would be fine.

Marriage and Cancer

I'm realizing that I have no idea what it's like to be married to someone with cancer.  I find myself genuinely interested in this question.  I guess I could simply ask my spouse. "Honey, what's it like being married to someone with cancer?" But I don't. To ask would seem either voyeuristic or egotistical. Like, "I assume that you spend every waking moment thinking about MOI and my cancer. So what's that like for you?"

But even if she doesn't spend every waking moment thinking about me, it's still gotta suck pretty badly.  Think about it. When you're married to someone with cancer:

1. Chances are, you're gonna go second. Not fun. Sure, you're alive, but the half-empty bed, setting the table for one when you really just want to eat out of the fridge, all of your couply friends inviting you out. Blech.

2. You have to field all the questions, all the heads tilted in sympathy, all the tsks and sighs and stuff that I don't have to deal with because it might remind me that I have cancer.

3. You have to put up with someone (me) whether she's silent or venting, crying or laughing, not to mention catering to my every whim. "I can't go out for dinner tonight like we planned. Let's just eat the half container of hummus that's in the fridge and watch TV."

4. You're probably just as flummoxed as I am by this fine mess we're in, and I know that, and I'm sorry.

Why (not) me?

Seven reasons why if someone is going to have cancer, it might as well be me:

1. I have access to the best doctors. (Shout out, Dr. Dejan!)

2. I have access to the best nurses. (Shout out, Luis and Ed!)

3. I have access to - and money to pay for - complementary therapies. (Shout out, Elisa and Huang Yu!)

4. I'm surrounded by people who love me.

5. I have a job that allows me to put my wellness first.

6. I have pretty much done what I want to do with my life.  Am I allowed to say that?  Anyway, it's true.  I have touched lives, brought marvelous humans into the world, loved fully, and set things in motion that hopefully will continue after I'm gone.

7. I have a blog.

There are probably lots of other reasons that aren't coming to mind right now.  But think about it - better me than some lonely person with no resources, no support, and who hasn't yet done what she's on this earth to do.

Jokes

Here's an email that my spouse sent to me today:

I decided that what you need is an elephant joke every day, as I believe they are good for something, although I'm not sure what.

Q.  How do you know if there is an elephant on your back during a storm?

A.  You can hear its ears flapping in the wind.

Not sure how I feel about elephant jokes, but I do take great comfort in the fact that there is a person in the world who is sitting around and thinking that I might need one every day.

Feeling a bit blue these days - and uncertain.  But physically I'm feeling as well as I ever have in my life, so if it weren't for all of these hospital visits and hard evidence, I'd be very tempted to conclude that this is just some sort of huge mistake.

"Gina? It's Dr. Juric."

"Yes, Dr. Juric?"

"I have some rather alarming news.  All of your reports, scans, blood work, biopsies - the lot - have belonged to a different Gina Fried.  Her name is Gina Michelle Fried."

"But my name is Gina Michele Fried."

"But with one 'l,' yes?"

"Yes."

"Well the other Gina Michelle Fried - the one with metastatic breast cancer - spells her name with two l's."

"Oh."

"So all of us here at Mass General are very sorry for the mix-up.  We've cancelled the rest of your appointments and scans.  Take care, now."

Click.

"Wait, so..." 

Dial tone.


Wow.  That was fun.

Bed!

When I get home from the hospital, I get into bed.  It doesn't matter what time it is, or what the weather is.  Sometimes I even say to myself, "Gina, go sit on the deck! It's beautiful outside!" Nope. Nothing can keep me from my bed.

Now, to be fair, I am a napper, so getting into bed in the middle of the day is not completely out of the ordinary.  The difference is that this has nothing to do with napping.  I simply need to be under my covers.

What I love about this -- what, habit? practice? reflex? --  is that I can do it!. I don't need to struggle against it, feel bad about it, or - worse - wish that I could do it but can't.  I can and I do.   But I do find myself wondering why - not in a tortured way.  Just in that way that you wonder about questions for the sake of the wondering, without having anything at stake.  I may find an answer, and I may not.

Going to the hospital means that I have metastatic breast cancer and, as optimistic as I am and as great as I feel, the chances are strong that I will die from this - and probably sooner than I would like to.

Going to the hospital means having stuff done to me.  Needles inserted.  Blood taken.  Chemicals injected.  Sit here.  Lie here.  Follow me.  I smile at strangers who will measure and scan my body because I am so desperate to humanize the situation.

Yesterday, as a man put a needle in my arm, he said, "If only the Palestinians weren't so full of hate!"  Later my spouse asked me what I said in response.  (Side note: Once I went to a new periodontist.  We were chatting before he got started.  He lived in Lexington - as I did at the time - but he sent his kids to Dana Hall.  "Great school!" I said.  "Yeah," he replied.  "The only problem with Dana Hall is that there are so many lesbians."  So there I am, lying back and with a fucking bib on.  Hmmmm. Who has the power in this situation?  But I still managed to say after a hefty pause, "You know, as a lesbian. I'm having trouble with the idea of you treating me."  Sat up.  Took of the bib.  Walked out.  And called my dentist and told him that he had made a horrible referral and that he may want to refer his patients to someone else in the future.)  So back to the hater of "hate-filled" Palestinians.  What did I say? Nothing.  I was tired, hungry from fasting for the past 15 hours, and just waiting for him to shut up and give me my radioactive contrast.

So I guess that's why I get into bed.  Just to undo, restart, regain my everyday-ness.  And sometimes to take a nap.

The Things I Carry

My students are writing essays on what they carry - literally or metaphorically - based on their reading of Tim O'Brien's The Things They Carried.  As they were going around the circle sharing their ideas, I thought to myself, "Well, for sure if I was doing this assignment, I'd write about carrying my cancer."

That got me to thinking - is my cancer really as present as I assume it is?  As I settle in to this new trial, I'm finding it taking more of a back seat to my life.  The thing is, I feel so damn normal! (Except for those days when I sit around with a white bracelet on my wrist and an IV in my arm.)  And, well, of course there's the fact that any time I feel an unusual twinge or pain, I'm convinced that this is the end.  But that doesn't last long.

Most of the time, I'm just going along - just like you.

So maybe it's time to put my cancer down and make room for something I'd rather carry - like a pint of Ben & Jerry's, or an open heart.

Holes

These are some pictures from the Alhambra in Granada.  When I go to the acupuncturist I try to imagine the places where she puts the needles as holes from which toxins and negative energy can easily leave my body, and everything that I need from the Universe can just as easily enter.

This weekend I practiced yoga with a teacher who stresses what she calls a "closed system."  The idea is to lock in the prana - or energy - and build a fire within the body.  The yoga term is "Mula banda" or "root lock."  (Here's a link if you're interested in reading more.)

So - open and closed.  Both are great, and necessary.  I really enjoyed the very audible ujjayi breathing, and picturing the force of all of that energy building within my body and doing...well, whatever yoga energy is meant to do.  Good things, I'm sure.  And I also love lying on that table every week, giving permission to all that is not needed to leave my body, and to all that is needed to enter.

Ommmmm

I'm at a yoga retreat this weekend.  It's marvelous and terrifying at the same time.  That's a lie.  It's not marvelous, though that could still happen.  I'm surrounded by people who can jump from downward dog to lotus in the time it takes me to begin strategizing about how I might get to the front of my mat without putting my knees down.

Where are all of the middle-aged folks who want to do some yoga just because it might feel good for a few days? These people appear to skip middle age altogether.  They magically go from their fabulous lean, muscular, glowing twentysomething selves, directly to their fabulous lean, muscular, glowing, silver-haired sixtysomething selves.

And they're so damn nice!  Why can't they be stuck up or bitchy so that I would have an excuse to hate them beyond pure jealousy??

And that's just the people.  There's also the yoga.  I actually came home last night after the first session to double check the flier for the retreat - Yes, it did say, "This retreat is for EVERYONE!" (Their caps, not mine.)  Everyone?!  Everyone who speaks fluent Sanskrit, knows all of the yoga chants -- no, not just Ommmm, I mean full on call and response chanting of Sanskrit verses.  Oh, and speaking of Ommmm, everyone has a beautiful, resonant Ommmm voice so that the room virtually shakes with their karmic vibrations.  To continue - Everyone who only uses the Sanskrit names of the poses, so that I have to look around to see what hugodashidana (not a real pose) looks like.

You get the picture.

So this morning, before I head in for the next three-hour session, I'm trying to find some equanimity.  I'm just going to do some yoga the best I can.  No - I'm just going to do some yoga that feels good and that will be the most restorative and healing for me.

Wish me luck!  Namaste.