Elizabeth Edwards Dies

How sad.  Elizabeth Edwards died today from metastatic breast cancer.  It went to her bones, to her lungs.  That's where mine is, so of course I am feeling so odd.  She isn't me and I am not her.

I have now lived with the recurrence for four years. We are on top of it, wary, always watching.  I don't understand how Elizabeth went from stopping treatment to death in one day.  I don't want to be in treatment until the day I die.  Cancer may get me, but the treatment is what makes me feel the sickest, at least for now.

I applaud every researcher, every budding scientist studying in University and setting their sights on oncology research. 

But really, Mae.  We all will die.  No one gets out of this world alive, do they?  We will all go from different things; cancer is no different from the threat of stroke, heart attack, car accident.  I think cancer just gives you an opportunity to consider death over time.  And perhaps that is a gift, not a curse.

Sleep peacefully Elizabeth.

Hello Again

Haven't posted in a long time.  Getting used to the new drugs.  I'm on Tykerb every day, 5 in the morning on an empty stomach.  Then Xeloda twice a day, 3 each time, with food, and one week on, one week off.  It messes with my appetite, but I have some pills for nausea, so not too bad.  Feel tired a lot, but still working.

But my PET scans showed a lot of improvement.  Less activity in the tumors and they are shrinking.  So that's great!

Not sure how long this will go on.  Doesn't look like it is something I can quit, ,unless it stops working.

Tired, heading for bed.

Thanks for reading.
Mae

Whooo-whooooo!

Well, we have boarded the next train in cancer treatment!

Had a great talk with my Doc with Gerry there, and decided that we would change the course of treatment.  Silly me, I thought you could march into Walgreens and pick it up.  Ha!

Tykerb and Xeloda.  The wonderful pharmacist at Walgreens directed me to the Apothecary Shop and I was able to get both scripts on Friday afternoon.  Tykerb comes only in 250mg size, and I am taking 1250mg at a time, so do the math, 5 large orange pills first thing in the morning with no food in my stomach.

Wait an hour, eat my breakfast, take three large peach colored Xeloda pills.  Repeat the Xeloda 12 hours later, always with food.  I've read through all the side effects.  Sounds just like the disclaimers for every drug advertised on the television these days, so we'll wait and see.  The Doc started me with a more moderate dose to see how I do, and he will step it up if I tolerate it all.

I take the Tykerb every day, and the Xeloda (for now) I take for 14 days, then 7 days off, then start over.  I'll repeate the whole regimen 6 or 8 times.  It's really just oral chemo.  I'm happy I don't have to go sit in the chemo room for it.  But I will see the Doc every 3 weeks.

The cancer is slow, Doc called it 'indolent'.  It's mostly my lungs right now, the left lobe in particular.  Still very very small.  The activity in them is increasing however, and that's what we hope to nip in the bud.  It's a good regimen; many of the other breast cancer metsters have been on this and seen the tumors disappear, so that's what we're hoping for!  Yay!

The Doc pretty much said that what we're doing is like buying time.  And with enough time they'll find something to cure this or knock it out completely, or at least turn it into a chronic disease, one I can live with until I die from something else.  (I'm paraphrasing.)  I can live with that.

In other news, I'm having a blast with a bracelet I'm making right now.  Beautiful dichroic cabachons and all sorts of sparkly beads.  I sold 5 bracelets last week, which is so heartening.  Having fun, relaxing, laughing.

Still Alive!

So this is life

What an odd week this has been. 

Carmen encounter.
News that is less than great.
Television.
Koster encounter.

So Wednesday night we went to a great little party.  Lots of young children and the folks that I share my days with who more and more are becoming so dear to me.  (Sigh.)

On the way home we stopped at a Walgreens.  Gerry went in, I waited in the car.  A car pulled up next to us, and I didn't look, maintaining my 'mean face' to ward off anyone attempting to connect with me.

Gerry comes out and says, Carmen was in there.  She's coming out.  She wants to see you.

When Ann was in Handmaker, there was this amazing caretaker, Carmen.  She took care of this woman, Lillian.  She was a whirlwind of compassion and love and fun.  She ran the Bingo games, and loved up every single poor person in there who longed to go home.  And she wasn't much younger than most of the people in there.  After Ann died, we never went back.  We watch the obituaries for those women/men we came to know.  We helped put bibs on those people, helped them get back to their rooms, talked with them, watched Wheel of Fortune with them.  For 6 months, while Ann suffered.

So there suddenly was Carmen.  A brace is holding her up. She suffers from a pinched nerve.  Still a smoker, still with the hacking cough that you can't believe will ever end well. A fountain of love washing over me as I sat in the Beetle.  Why?  Why that night, at just that time?  How does that happen?  Why is she there in front of me right now?

Friday, my visit to the Doc.  I delayed it a week so I could pay the lower co-pay of $20 instead of $50.  Seems my tumor markers continue to increase, now over 16 which is the cut off point.  Hmmmm.

PET scan to come in July, soon.  It will tell the tale.  If there is progression in my lungs, as I suspect there will be, we will be changing our treatment plan. Probably going on to Tykerb, maybe Xeloda.  This makes me so sad and worried.  Those drugs can mean incredible fatigue, possible nausea and diarrhea. I spent some time documenting my 'plan' for going on disability, not sure how it would all work, but determined to NOT work through chemo a second time.  I have been fighting this for 3.5 years already.  My sense is that I have 5 to 10 years more at the most.  And that's okay.  I just want to make sure that the life I live is full and happy and comfortable...

Sunday morning.  The television we have had for the past 20 years or more refuses to resolve its picture.  There are lines.  We have experienced some reluctance from the TV to make its picture perfect, but today it doesn't come together.  We look at the ads.  I research LCD vs. Plasma vs. LED televisions, and off we go to Sears.  Tonight we are sitting here watching a Samsung 46" TV, have a new DVD player, and will be calling Cox on Tuesday to order up HDTV with a DVR. Helllllooooo 21st Century.  We have a deal with Sears with no interest for 24 months, so that makes it workable.  As I said to Gerry, the world is going to end in 2012, so why worry about debt?

Koster encounter.
We're waiting for noon, when Sears opens, and sitting outside of Sears in the Park Place Mall.  Keith Koster walks by.  He is still himself.  I haven't run into him since 2001 or 2 after I rallied the troops of Desert Voices and reorganized.  I like Keith.  I think he's a creative guy.  Having lived longer, I have a better perspective on life.  There wasn't anything specifically wrong with Keith's leadership, more with the board at the time.  It felt awkward to see him, yet so very nice.  I wanted to apologize, but didn't get there.  Keith, I'm sorry for my arrogance and hubris.  I haven't been able to go back since I stopped being the president  of the board. 

So that's our week.  Or my week.  How am I feeling?  I'm okay.  as I keep saying, I'm still alive, still working, still with a sense of humor and an interest in what's going on around me. 

The longer I live the less I understand the world.
Mae

The longer I live,the less I know about the meaning of life.

A New Course of Treatment

Met with the Doc on the 14th to discuss the results of the PET and MRI's.  My hips and back are fine as far as cancer goes.  It's there, but not active.  They're seeing some bursitis in my hips.  How funny.  I know the first time I heard of bursitis I was probably CERTAIN that it would never happen to me.  And yet, here I am.


We're seeing more (slow) progression in my left lung, as well as something new in a lymph node area behind my chest wall.  I have to emphasize that this is small and slow.  We are NOT talking big panic here!  (Small panic is okay however.)


We decided that I would stay on the Herceptin (the infusion every 4 weeks with virtually no side effects), stay on Aromasin (a tiny pill once daily), and add Tykerb.  Tykerb is taken daily in pill form.  It is considered a chemo, but targets the cancer.  Which, in terms of how this affects me, (which of course is the most important part...) means that I don't lose hair.  There are some nastier side effects but they occur in only about 30% of people who take Tykerb, so we're thinking positive.  And, if it should happen that I'm in the 30%, they have lots of other drugs to handle those side effects.  So, no big deal.

It's funny how easy it is to focus on the possible side effects rather than if it will work or not.  And that is funny - 'odd', not funny - 'ha ha'.

So of course there is prolonged drama just getting signed up for the meds, but the wheels are turning.  I'll keep you informed as to how it goes.

And in the meantime, check out my page on Etsy.  www.etsy.com/mysistersbaubles.  Make me happy.

A piece of advice

Don't ever sign up for a PET scan and 2 MRI's in one day.  It's exhausting.

Last PET was October 09.  So I had just a CT scan of the lungs in January, it showed a new tumor, and so here we are in April, having another PET.

But my hip (left) and lower back have been pretty painful for the past 6 months or so.  Thus the MRI.

I'll probably hear on Wednesday or Thursday as to the results.

Just sayin'.
Mae

Happy Birthday to Me!

I'm 58 today!  Yay!  What a nice day I had.  Gerry sang to me when I woke up, I got myself a half-caf vanilla latte at Coffeetimes, Clyde brought me a chocolate cake that said 'Happy Birthday Mae' on it, and all my friends at ATC gathered in the conference room to sing to me and give me the 'traveling birthday decorations'.  I got a huge card that everyone signed, and a marvelous 'Happy Birthday' sign that's connected together with colorful yarn, and a Monkey that spins and sings the Beatles Birthday song.  Went to lunch with one of my favorite new people, Shirley Chann, and Clyde and had a marvelous fish fry at Pastiche.  Finished sending in all the files for the conversion at work and left the office at 4:30.  Smelling baked potato now, anticipating steak Gerry's way with roasted asparagus.

Life is very, very good.

Herceptin, revisited

Well, hello again Herceptin.  This is a chemo that thwarts the growth of blood vessels to tumors.  I took it from February of 2007 through April of 2009.  With lung nodules showing up in July of 2009 and increasing by January of 2010, I am back on it for an indefinite period of time.  Most likely right up until it isn't working anymore, and then we'll try something else.

Herceptin doesn't really have bad side effects, with the exception of starting it up.  The very first time I had it, it gave me a couple of hours of muscle cramping, joint pain, shivers like a heavy fever.  After 10 months off, I had the same reaction Friday.  It's like a bad flu.  Loaded up with lots of blankets, drinking hot tea, comfy flannel jammies....  Rather uncomfortable. 

In some strange way though today, I feel a bit renewed, almost like a sweat lodge, all the toxins out, a little weak in the muscles, but clean.  Spent a big portion of the day with one or the other dog on me, cuddling, using their warmth like a heating pad.  Cold and rainy outside, but that's something amazing when you live in the sunshine all the time.  So, a good day.

Up the Down! Up the Down!

Okay, I'm just sayin'. 

Angie's coming to visit!

Well, her first priority isn't really visiting, but she's here, and we get to have her in our house, and I'm very, very happy.  Angie, if you're reading this, you make me happy.  Shelby, I wish like heck that you were going to be here too, but I will wait til June and enjoy the heck out of you then.  OMG, I used 'heck' twice!  For shame!

Outside the window of the conference room at ATC, we can see when people turn North onto Scott Avenue from 14th Street.  It is one way going South.  Today, a black car did it, moving pretty fast.  I just had to call out 'Up the Down! Up the Down!'.

My colleagues had no idea what I was talking about, but still they 'got it'.  Jenny frowned.  She takes it as a personal affront when people do that.  And they do it a lot.

But here's the happy, happy beauty that I get from 'Up the Down'.

It was a wonderful, funny time in a little car with Angie and Shelby.  We were going against the stream in a parking lot, and I called out the only warning my brain could muster. 

"Up the Down!  Up the Down!"

Lordy, how we laughed.

I do like to laugh.  My nieces identify me with that laugh.  It was perhaps too loud for them when they were younger.  But I do love to laugh.

What a fun and wonderful life I have had so far.  So much laughter.  So much fun.  What will tomorrow bring??????

Keeping an eye on things

Back to Herceptin on Friday.  I like to think that it's no big deal, but I find my mind going to it over and over.  I expect I'll have that 'first time' reaction.  They tell me I've been off of it long enough that it's like starting over.  It's a weird thing, like intense cold and cramping.  I remember being under tons of covers and not being able to get warm.  But it will be okay.  It doesn't last forever.  Gerry is going to take me and pick me up so I don't have to worry about driving.

I am constantly startled by random beauty in the world.  I'm driving along a city street, and there will be a stand of flowers that makes my heart ache.  I washed Sam this weekend, and now when he lays on me in the sunshine, he smells so wonderful, so fresh and sweet and pure.  I love to look at Josie's face and see her fine, red eyelashes.  She lets me look at her so completely close up.  What an amazing thing to have access to such a fine little animal, right there in our home.  The universe is amazingly beautiful.  Take a close look.

Rainbows

I am so glad that I live in a world where sunlight and rain can create colors in the sky.  The rainbow was incredible.  The sky was dark gray, and the space inside the rainbow was lighter than the space outside.  I could see the colors right down to the lavendar.

While I am certain there is a scientific explanation for the colors, the miracle is that there are colors.

Busy!

I have always thought it is better to be busy than bored.  I still think that.  I am so not bored!

Conversion at work is going okay, the pressure is on, we're in the last 2.5 weeks, then some intense training the first week of March, and on with life. 

The arts are really getting hit hard with this recession.  I get it.  There's no money.  But anybody in the big firms who is still getting their bonus, they really, really, really should share it. 

I think we got in trouble when executives and managers started getting salaries that are so much more, percentage wise, than the regular folks doing the work.  I think it is better for everyone if everyone shares in that wealth.  Really, folks, do you need 3 vacation houses?  Wouldn't one do, and then the people working for you could afford to own their own home?  I know that everyone wants to 'get ahead', but this is ridiculous.  We have to try and spread the wealth around. 

So, you're probably not going to give up that gigunda salary (your management probably wouldn't let you!).  But here's an idea.  Get out and share what you have.  If you have enough, take the rest and spread it around.  Help people who don't have enough to eat, who don't having housing.  And help sustain the arts in your community.  Being able to see live theatre, being able to hear the symphony, watch a ballet, submerge yourself in the drama of opera....in a lot of ways, that is the icing on life.

It's the stuff that grabs your heart, and makes you laugh, makes you cry, makes you Feel! that makes you feel alive.  Don't let that go out of your community.  Don't let that light and that fire go out. 

Please!  Find something that stirs your heart, and support it.  You can't take it with you.  Spend it on beautiful things while you're here!

What is really important?

Having fun.
Telling people how you feel.
Cuddling your puppy.
Being real.

There are very few days that go by without me thinking about my friend Terry.  If there is one thing that I regret, it is losing his friendship.  I don't know anymore if it is all my fault.  Seems hard to imagine that I could have destroyed it all by myself.  But, who knows.

The friendships of our youth are the strongest, even when not logical.  I let few people in anymore.  Some (Angie and Shelby...) sneak in before I know it, and I am glad that they do.  But those friendships forged when we are young can be so strong.  We hadso little, other than our friends, at that time in our life.  We moved each other from apartment to apartment.  We shared cars and food and housing and secrets and our insanity.

My friend Terry accepted me as I was, as I did him.  At least I think so.  I think a great deal about what went wrong, about what changed.  I have a number of theories.  But do any of them matter?
All I know is that our friendship is gone.

As I face my own mortality, I want to make it right between us.  But I'm not sure that is possible.  What a damned shame.

El Nino has Peaked

I am totally enjoying the cool weather....

The fog was low on the mountains, and snow showing on the peaks.  It is a beautiful time here.

Fun.

Oh, living is so fun.

Saw [title of show] tonight.  Ohhhh, how fun.  I laughed so hard.  Wept a little too.  Life is sometimes heart-wrenchingly dear.

Christopher McGovern is wonderful, so funny, so very sweet!  Mark Brady, you hit the jackpot.

I'm a happy girl tonight.

It's Raining, It's Pouring

I am trying to figure out what life is about. 

Saw Our Town for the first time on Sunday, and it really touched me.  Made me want to pay attention to everything, each little twitch.

Saw the Doc today.  We decided that I'll start on Herceptin again.  Have to have an Echocardiogram before I start to make sure my heart is doing okay.  Hoping that the Herceptin will stop the growth of tumors in my lungs. Talking with the Doc is surreal.  He looks at me and sees that I am moving towards dying, and his goal is to give me the best life possible on that journey.  I just feel alive, right now.  Can't conceive of dying.  Give me a treatment that will stop this progression, and I can live forever, right?  But we talk about his plan, how he wants certain treatments in his 'back pocket' if and when we need them.  Don't really want to start using Tykerb yet, cause we might need it in the future.  Don't want to go to systemic, cytoxin chemo.  We might need that somewhere down the road, when everything else stops working.

What???

I refuse to live in that future possibility.  I am alive right now.  Nothing is wrong right now.  I am alive.  We'll deal with the other, when and if it comes.

In the meantime, great news.  I will go to Minneapolis and Milwaukee in June and see people I love.  Yay!

Thank you for letting me share these words with you, scary as they might be.

The Track Coach

It is funny to me how some things have stuck in my head, since so many other events, moments, movies, etc., have just disappeared. 

So this morning, I get up thinking about this latest challenge with cancer, not freaked out or anything, it is just on my mind.  And then I remember something the track coach said once, back in high school. 

"Don't slow down when you see the finish line." 

I remember at the time marveling over that, turning it over in my mind, having a private little 'a-ha' moment at 15. 

I loved running the hurdles and was fairly good at it for a fat girl.  I liked the rythmn of it.  "Step-step-over, step-step-over". 

But I would slow down in that run between the last hurdle and the finish line.  I would see the finish line and think "Ahhhh, relief, I get to stop". 

So I imagine that I needed that little moment, that thought, this morning.  Just my brain and my soul trying to take care of me.

Keep running kid.  Jump the hurdles.  Don't slow don't when you see the finish line.

Damned Cancer

So, I kind of freaked out this morning.  I decided I couldn't wait until the 27th to talk to someone about what is going on in my lungs.  God bless Jon Schwartz.  He called and we talked. 

The bottom line, he says to me, "Do you hear any high anxiety in my voice?"  It's still very small, we don't have confirmation that it is even cancer.  It is indeed suspicious.  But radiation isn't an option...I have been radiated there before.  Biopsy, not an option, still too small.  So maybe we wait, do PET scans, watch.  Or maybe we go back on Herceptin.  That's kind of my vote. 

He said, several times, I don't want to do systemic chemo because of the impact on your quality of life.  I find myself with a dry cough that sometimes gets the best of me.  My left lung hurts.  We talk about what we want to do.  I have no grand and lofty goals....should I have some?  ?Does it matter?  Will it matter?

Not Great News, But Still Alive~

Today I had a CT Scan.  Or maybe a CAT scan.  They keep saying one or the other.

It was very quick compared to a PET scan.  And Kristine called with the results this afternoon.

Okay, so.  The nodule in my lung that we saw before, has increased in size and activity.  And there's a new one that cropped up in the last 3 months, and is now 4mm in size. 

I have an appointment on the 27th to talk to the Doc and see what the next treatment is.  I wish I had never stopped the Herceptin. Did I bring this on myself by stopping that?

I don't want a toxic chemo....please, no. 
I've got a really busy next week, so I'm glad I don't have to worry about this til the 27th. 
And then, I look at these poor, poor people in Haiti.  What on earth am I afraid of?

Doctors and tests and service in America

I have said this for years.  Some of you have probably heard me say this.

I despair for the future.  Service in America is only going to go down from here. 

When I encounter excellent service, I am so thrilled.  But so often, I am subjected to neglectful service.

My doctor's scheduler really doesn't give a darn about whether or not I'm taken care of.  I ask her to give a message to people and she doesn't. 

I don't think I'm being a prima donna, I really don't.  I just want a decent response.  some little bit of attention.

Phoenix and Back

Drove to Phoenix and back yesterday.  No serious delays or problems.

It's probably just a little weird how much I enjoy my car.  It's a little bit of a guilty pleasure I guess.  After years of being the one who drove the Fiero and the BMW's, I don't think G is truly happy in the 'family car', a Ford Taurus Station Wagon.  I was theoretically supposed to drive it, and she was going to get a used convertible once I sold my 1995 Toyota Pickup Truck.  But when it came down to it, I just couldn't let the truck go for some reason, and then, by the time I was ready to sell it, (and truthfully, even before that) I just didn't want to drive the station wagon.  I thought I would.  I thought it was a good solution for us.  I didn't want the open bed truck any more because I was always being asked to haul things.  The wagon fit all the supplies I would need to go to an art show or fair with my things.  But by this point I was driving to a job each day, and I just couldn't see myself in that car.  When I was working for ourselves, I didn't drive the truck on a regular basis.  I remember even asking G if we could both 'share' the smaller car depending on who was going somewhere on any particular day.  The wagon would be the utility vehicle, the 'second' vehicle.  I couldn't do it on a daily basis.

So in December of 06, I wanted a Beetle.  She wanted a convertible.  We bought this baby blue, grey rag top.  It is my sanctuary in many ways.  My music, my radio station.  I now drive us to the fun things we do together. 

The drive to and from Phoenix was like extended therapy yesterday.

USB Ports

Computers have changed a lot since I was a girl.

Oh, who am I kidding.  We didn't have computers when I was a girl. 

That sounds funny.  As though I'm no longer a girl.  Does that make me a boy?

I think that all of the USB ports are no longer functioning.  That's gonna suck.

Busy week ahead.  I'll be on the road to Phoenix and back twice, Monday and Friday.  As much as I really hate that drive, there is something sweet about it because I love my car.  I'll pick out some good music today and get it in the car so I have lots to listen to.  Sometimes I just stay on NPR, my window to the world.  So mind expanding.  It's like all the hippies from the day who took LSD figured out how to get the same mind expanding feeling, just with information.  Sorry NPR, I'm sure that wasn't what you intended.

So, just to wrap things up on the doctor front, no one ever called about trying a different test.  And the new prescription did come in the mail.

However.  The prior drug, Femara, I had a prescription for 90 days supply.  That cost me $87.50.  The Aromasin prescription was written for a 30 day supply.  That cost me $87.50.  So I check online and sure enough, if they had written it for a 90 day supply, it would have been (drum roll....) $87.50!

I guess it is too much to ask that they (doctor) look at what I was doing in the past and figure I'd still like to do the 90 day supply.  Surely they are familiar with meds by mail that cost way less when you do 90 days instead of 30.  Or maybe if they looked at it and just weren't sure what I would like, they would call me back and ask.  I was carrying the phone in my pocked all day last Monday waiting for the 'other' call, so I could have very easily helped them out. 

So I wrote to the Meds company online and explained what the doctor had done and that I would not pay $87.50 for only 30 days when I could get 90 days for the same price.  I tried to call and leave a message for the doctors, but of course they aren't open on Saturday.  Nor do they provide an option to leave a message for anyone. 

So tomorrow morning, as I am on the road to Phoenix, I will call them and ask what the heck they were thinking.  And ask them to fix it.  And I'll carry my phone around with me all day, hoping that they'll answer me, but I won't even put it on 'manner mode' cause I'm sure they'll never call.  And the other thing with the tests?  I won't even mention it.  But the Doc is getting an earful on the 11th when I see him.

Okay, okay.  "Bitter!  Party of One!"

Sorry for all the bitching.
Mae

Happy Agitated New Year

We spent a wonderful evening, shared fondue, sipped a nice wine, watched the ball drop in Times Square (hokey, but a tradition). 

So why did I toss and turn all night, feeling agitated?

I come from a long line of worriers.  My father was a worrier.  He worried himself to death.  Was sure he had some fatal disease.  Turned out he did.  When they diagnosed him, he was completely vindicated and at peace.  He died the next day.  Of course, he was sure about that fatal disease most of his life...and eventually, that's bound to come true, even if it's "natural causes".  Life, if you think about it, is fatal.

In the past, I have seriously worried about how much I worry. Hasn't been so bad lately though.  So last night was a little unsettling.  I'll spend the day trying to shake the feelings of doom.  Or maybe just the next ten minutes.

Happy 2010.  Here's to Love, family, good friends, health and prosperity.  (Not necessarily in that order at any given time throughout the year.)