Waiting for Savasana


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The Rollercoaster of Fear

Gosh, this blog is depressing, isn’t it?  And what a title, eh?

But that is how I’ve felt about all of this from the moment that Radiologist was about to do my surprise biopsy on April Fool’s Day (of all days) and asked me, “Are you ready?”.

Even though I wasn’t I nodded and she stuck the amazingly long needle into me.

It’s been downhill ever since.  Most days I’m ok with that.

You know what freaks me out?  When I do a search online of something like, “When will my eyelashes grow back?” and I end up in some cancer forum and and I’m reading an old thread from like 2007 and someone has written something helpful and their signature reveals a secret history of sorts.  One minute they were the same stage as me and got the same treatment as me and then the next thing they knew, just a couple of months later, they were Stage IV…and then I can see that the person with the helpful advice is gone. I mean, they are really gone.  Long gone.

And that scares the crap out of me.

I have to remind myself that that person isn’t me.  At least not today.  And not tomorrow either.

The rest, I have to leave up to the universe.  Cancer will teach you that you have no control over anything, but at the same time, you really have control over anything you want.

I get to choose everything, even when it feels like there is no choice.

But really THE UNIVERSE is in control.

I know I’m not making sense.

It sounds crazy.  It sounds like I’ve lost my mind but this is a moment of clarity.  Fear and worry will do me no good.  The only thing I can do is take the helpful advice from a long dead woman who walked a road very similar to mine and keep moving as long as I can.

We have an old drawer full of CD’s from the ’90’s.  I’ve been listening to Indigo Girls.  Remember them?  This song “Virginia Woolf” reminds me of how I feel writing this.  I like the idea of a “kind of a telephone line through time”.  I miss the ’90’s.

I could only find this version because the videos of them singing live…umm…anyway, dontcha just love them Indigo Girls?  I do.

I remember I saw them at Lillith Fair with my pal Heather and they were pretty good.

Anyway, I hope this rollercoaster of fear leads to a place of calm.  Today, that is all I can do, think, meditate and hope.

 

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Two Steps Back

Well first, I have to tell you, I think I’ve figured out my Halloween costume.  It’s what I wore yesterday when I went in for a blood draw.  T-shirt, leggings a scarf on my head and a surgical mask because let me tell you, it sure does scare the heck out of people!

Ba-dum-bump!

Monday was a bad day.  A painful day.  I felt terrible.  My hips hurt.  My back hurt.  My gums have been bleeding.  I just felt horrid.

I tried to walk with my husband to pick up the little one from school and didn’t make it to the corner without turning around and going back…crying.

I just hurt all over.

So here I was all excited and feeling powerful because I had signed up for that 15k and the next day, I could barely walk.

My husband made me call the ONC nurse because of all of my symptoms and they called me back, told me they wanted me to get a blood test and see my oncologist the next day.  And then she told me not to worry until it was time to worry.

Umm…I wasn’t worried until you told me that!  What in the world?!

When I got off the phone I was panicked and crying, “They’re not going to give me more chemo tomorrow , are they?!!  They aren’t going to make me have it again tomorrow, are they?!”

Because as you know, the day after Monday is Tuesday and Tuesdays were my chemo days.

And my husband reassured me that they would not give me chemo.  They just wouldn’t.

It took a little while for me to calm down.  Chemo is that bad.  I don’t want it anymore.

So Tuesday morning was my radiation simulation anyway.  We stopped at the lab for the blood work beforehand.  And this lady in front of me practically coughed all over me.  Gross!

Seriously people, cover your coughs!  Were you born in a barn?  Who does that?  Especially to someone wearing a scarf on their head?!

We people of the scarf have compromised immune systems.  For pete’s sake, don’t cough on us!  And it’s just bad manners.

She didn’t even say “Excuse me.”

My husband found a mask for me to wear so I did.

And I gotta tell you, my “costume” scares the poop out of people!  The looks of horror!  I am the person no one wants to be.  Maybe to some, I’m their past; a loved one or friend.  Maybe to some, I’m their future, or the fear of it.  But this is my reality and it terrifies people.

I figured out beforehand that the symptoms I presented to the nurse could be Leukemia.  I was a little worried but I had also been taking Advil and my gums stopped bleeding once I quit taking it, so I had a feeling I was ok.

And I was.  My bloodwork is still all sorts of crazy but no leukemia.  So that’s good.

Later that day I saw my oncologist and she snarked at me a bit for…well…not for being a hypochondriac exactly but for expecting to feel 100% better in the blink of an eye.

I told her it was my husband’s fault, he’s the one who made me call.

Monday was a really bad day, Tuesday was exhausting, hopefully, today will be a bit better.

Anyway, I still need to tell you about my port removal and I also need to tell you about the radiation simulation but I am tired so it will have to wait another day.

In the mean-time, don’t cough on anybody.  Ok?


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I couldn’t help myself!

I signed up to do a 15k in January.

marathon_beth_sj_rocknroll

That’s me!  This is what I used to do.  And I loved it.

My husband and son are scolding me.  They say January is too soon.

But there is hot chocolate involved and Run Girls!

I love my Run Girls.

And I can’t be still.

I can’t let this get me.  Studies show that women who have breast cancer and walk for just 30 minutes a day, six days a week, reduce their chance of recurrence by something like 50%.  I read that in “Anticancer” by David Servan-Schreiber.  I am still reading it actually and I highly recommend it for anyone.  Lots of advice for preventing recurrence and preventing GETTING cancer in the first place.

I mean, you can say I had the genetics for this because my biomom had breast cancer last year but I got it 18 YEARS before she did!  It isn’t just heredity people, it is a combination of many things.

This does not contradict my Angelina Jolie rant, however if there are people out there who have done actual research to help me keep this cancer away, I’m going to do my best to follow their advice.

Have you heard of Jane Tomlinson?

She was given six months to live after being diagnosed with Stage 4 breast cancer.  So you know what she decided to do?  Run marathons.  She lived seven more years and started a charity and raised a whole bunch of money to help people.

image from dailymail.co.uk

Wasn’t she beautiful?  Now that is living life.  That is doing it.  Someone should make a Nike commercial about her if they haven’t already.

Right now, I can barely get off my couch.  Yesterday, I actually rolled off the couch onto my hands and knees on the floor and then pushed myself up to stand because I am just that sick and out of shape.

But I refuse to stay this way.  I refuse.

I think I will actually start with a 5k Turkey Trot and move onto that 15k in January.  I may walk the whole thing.  I don’t care.  My friend said the cut off is a 15 minute mile and I think I can do that.

And if they pull me off the course, so what?!  At least I’m out there trying.  Not giving up.  I’m ok as long as I get my hot cocoa at the end.

I won’t give up on life, on love, on friendship and family.  I won’t give up on hope.

I won’t.

I refuse.

And anyway, I am getting pretty bored lying on my couch drinking apple juice.


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Still Recovering

Yesterday because my husband was working, I was needed to walk my youngest child to school.

By myself!

It’s the first time I have done that all school year.

It boggles my mind how some people do dense dose chemo and actually show up for work.  I don’t think I would be able to do it consistently.  And if I did I would be sleeping under my desk!

And there’s no way I could teach children while undergoing dose dense chemo.  No way.  I could maybe show up to greet the kids but even the hugs would hurt me.  I would have to hide in the storage room where they keep the crayons.

Walking to and from the school is about 1/4 mile.  I brought the dog and we were off.

I did ok.  My back and hips hurt progressively more as we walked.  The dog and the boy were ecstatic.  This is all it takes these days for me to make anyone happy,  We dropped him off outside of school because NO DOGS ALLOWED!

I made it back home without crying from pain.  I stumbled a bit.

I took a nap for several hours.

It is a good thing I am unemployed.

Another thing I forgot to say about the steroids is that they make me crazy thirsty.  And water doesn’t taste good.  I drink a great deal of juice in the days and weeks after chemo.  I prefer diluted apple juice.

Well, it happens every time the thirst sets in, I go to the fridge and all my juice has been consumed….by other people.  And no one ever replaces my juice!  No one. It’s just all gone.  Even the orange juice, and I hate orange juice.  And this last time, I admit, I got a bit irked.

I mean, really?!  I do not expect the world to revolve around me at all but we know this is coming.  It’s only eight times we’ve done this already.  Really?!  Where is my juice?

Where is my juice?!

I don’t ask for much.  Believe me, I don’t.

Where is my juice?

I got some shortly after.  And please do not think I am a juice princess but when there is a pattern of me needing lots of juice at a certain time, I think it would be nice to be prepared….before I become a juice monster!

Provided by Slime Juice by yoda

But that is the thing about being the patient, you are at the mercy of those who want to (or have to) help you.

There is a fine line before you, the patient can look like a demanding jerk.  And I try to cross that line as little as possible.

This is me, I’ve been drinking a lot of juice and sleeping a lot and talking a lot and watching a lot of T.V. which kind of drives me crazy.  I am tired all the time.

I can’t drive because I am still on some pain stuff.

Yesterday, we made a plan to go to ULTA because I need an actual eyebrow pencil or eyebrow kit because the eyeliner I have been using is too easy to smudge now that my brows are bald.  I was excited to go.  We never made it.  I fell asleep before I could even get my shoes on.

I might go down to SoCal next week to visit family including my new baby niece (!!!).  But I’m not sure I will be up for it.  I’m sitting here in pain just from typing.

I’m also having weird breathing issues.  Nothing too serious but it’s a little scary.  I have a hard time catching my breath.

I have other things to write about like my port removal and my newfound love/hate of wigs, but I am tired.  I think I am going back to bed.


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Roids!

Ugh!  Steroids are the worst.

They keep you standing up and they keep the pain away for a bit but other than that, not much fun.

My firstmom said that when she was coming down off of the steroids she would get weepy.  I have not had that so far.

I’m just edgy.  And I think too much.

I get a bit aggressive while on steroids.  For instance, the other day, I had to meet my plastic surgeon at the actual plastic surgery center rather than the breast center.  The plastics center is a bit more posh  even though it is just around the corner from the breast center.  Well, that day I was wearing my pink wig and as hubby and I were walking to the car this snotty elderly lady walking into the fancy plastic surgery center gave me the old side-eye of derision.  I think she even threw in an eyeroll.

Whatever.

I smiled and said, “I finished chemo yesterday, what’s your problem?”

I really did.

And she stiffened her shoulders and ignored me.

Aggressive?  Me?  Perhaps.

Roids.

I wonder if that nice lady got plastics to remove the stick from her tush. Pink wig or no I’m still cuter.

Whatevs.

See, I’m still ‘roid ragin’.

This weekend I got the ‘roid swell.  That is the worst.  I get huge!  I inflate.  I always worry it is going to be permanent.

The doctor gave me some stuff to help with the swelling but it doesn’t seem to work much.  It just takes time.

I am very uncomfortable. And hideous.

Whatevs.

It’s the last time.

I took my last dose of steroids yesterday.  The pain started to set in last night.  It got pretty bad.  Bone crushing fun.

The dog slept in the crook of my arm all night.  She is quite the therapy dog without any training.  How do they know to be so good to us?

This time has been easier only because I know it is the last.  It still hurts.  But this is the last time I have to do this and it’s a good thing because I think if I had to do anymore all my nails would be gone and my skin would peel off. I am just fried.  FRIED.

My eyebrows are officially finito.  I lost my bottom row of eyelashes the morning after this last treatment and now my top lashes are almost gone too.  It’s crazy what this has done to me externally.

I just hope the chemo did it’s job inside.

And the ‘ROIDS!  THE ‘ROIDS!  They make my mind sharp but my body swollen and dull.  They make it so I can’t sleep but they exhaust me.  They make me think too much if I let them.  But this time around, I’ve actually figure out some stuff.

I am so glad to be done with these ‘roids.

I get my port out on Wednesday and then the real fun begins.

The journey continues.


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Useful Hobbies

In January of 2012, I bought a sewing machine.  It was a viking Emerald 183.  It looked like this:

Courtesy of Husqvarna Viking

It was ok.  I learned a lot with it.  I made napkins and pillowcases and a cute skirt.  I made some pajamas for my son’s Build-a-Bear.  I made bags for my friends on their birthdays.  I made coffee cozies as a fundraiser for the Leukemia and Lymphoma Society.  I had a lot of fun with that machine.  I didn’t love it though.  It skipped stitches and it got stuck hemming jeans and it squawked at me a lot.  It groaned through many of the tasks I gave it.  And it would not sew minkee fabric evenly no matter what I did. My dealer who is awesome, offered me one year to trade in the machine for it’s full value.  The Emerald was actually discontinued but Gordon at Viking Sewing Center honored our agreement and accepted my trade-in anyway.  Gordon rocks.  He’s been in business since 1965 and it shows.  This is not a commercial.  I just like doing business with good people.  Anyway, the minute January of this year rolled around I traded up to this:

IMG_1406

It’s my lovely machine.  My Husqvarna Viking Opal 670.  It is everything my Emerald wasn’t and I love it.  Before I use it, sometimes I hug it.  I love it so, so very much.  It sews like a dream.  Like butter.  The stitches are beautiful.  It never squawks at me.  And it has so many features.

My favorite feature is the built in scissors.  I push a button and it cuts my threads and pulls them through to the back side of my project.  It’s not a do or die feature but I just think it’s cool.

It is the perfect machine for me and my skill level which is still very much novice.

I wear wigs and wiglets when I am out and about but at home, I wear soft cottony stretch knit hats.  My favorite is currently lost.  This makes me very sad especially since I spent $25 on it.  It’s made out of t-shirt fabric and has three seams.  $25?  I could do better for cheaper.

So I bought some knit fabric of my own and have been experimenting with sewing my own hats.  It keeps me busy.  And it’s fun.  My latest creation I modeled after a baby hat we purchased at The Gap for my son in 2001.  I am wearing it right now (my new creation, not the baby hat).  It cost me $2 total to make and I cut it out free hand.

I love my hobby.

But you know what else I love?  Sewing machines.  I love them.  They fascinate me.  They can do so much and they can be simple like the mechanical machine I bought my son for his birthday to extremely complex like a fancy pants (I could never afford) Bernina that costs $14K.

IMG_1443

You know how people like power tools?  That’s how I feel about sewing machines.  Viking, Bernina, Pfaff, Elna, Janome, White, Singer, Babylock, Brother.  Vintage, modern.  I don’t care.  I love them.  Is that weird?

I guess it’s weird, but it’s my new obsession.  If you tell me you sew even a little, I’m going to ask you about your machine.  I’m going to look that machine up online.  I’m going to research it and read reviews about it.  And it makes me so happy.

That is weird, right.  It’s weird.  But I do not care.  I need happy in my life.  I need calm.  And sewing machines are my new thing.

You’ve got to find what makes you happy.  What makes you happy?  And furthermore, what kind of sewing machine lives at your house?


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You Never Have to Eat a Poop Sandwich

This is important.

Oh and by the way.  Last chemo went well.  I got through it.  My husband and my mother aka my birth mother were with me.  It seems the bell was lost so husband found a bell sound on his phone.  He turned up the volume and I pushed the button.

Chemo is done.

Woot!

So I am currently pumped up on steroids and painkillers.  I am doing ok.

The day before yesterday, someone tried to give me a poop sandwich via email.

People have tried to give me poop sandwiches in the past and they are always surprised because here is the thing.  I won’t eat a poop sandwich.  Never.  Not even if you try to feed it to me on a pretty plate.  Not even if you just say, “Here’s a poop sandwich, eat up!”

No thanks.  I won’t do it.  Never have done it unless it was forced on me.  And sometimes when i was smaller and weaker, it was forced on me.  But I’ve got to tell you, it hasn’t happened in a long, long time.

And it infuriates people.  It really does.

It must be so frustrating to make someone a poop sandwich and be rejected especially with all the starving people all over the world.  But guess what?  Even starving people don’t eat poop sandwiches.

I’ve been reading a lot of Ticht Nhat Hanh and he talks a great deal about watering the right seeds in each other.  He also speaks about how in many relationships, we don’t water the right seeds in each other.  We water the seeds of anger and hurt and betrayal and rage and jealousy.  We have to learn to water the right seeds in each other to have prosperous relationships.

We have to water the seed of love and compassion and care in each other.  Think of the powerful relationships we can have when we do this.  It’s a win-win every time!

I am proud to say that my husband and I for whatever reason are really good at this.  We always have been.  We give each other a great deal of balance.  We are in many ways each other’s Yin and Yang.  He calms me and nurtures me and I in turn bring a lot of energy to our relationship. I am so grateful for that man.  And you know what?  My relationship with him helped me grow as a person in my relationships with others.

Am I perfect at this relationship thing.  Heck no!  I am human and I am flawed and sometimes I am too honest and too emotional and to bitchy and what have you but I am trying.  Every single day.

I can’t tell you how many times this summer I have asked my boys if they are watering the right seeds in each other.  They roll their eyes at me but it has made a difference.  And all because of a very wise Buddhist monk who writes really informative books.

But what do we do with the people who repeatedly refuse to water our seeds?  Who try to feed us poop sandwiches at every turn?

I’ve decided to love them anyway but from afar.

I have stage 3c cancer and I do not have room in my life for people who obviously do not have my best interest at heart.

And I can’t change anyone.  I can only change my reactions to them.

And to tell you the truth, I just don’t have time for B.S. and lies anymore.  I don’t have time for people who for whatever reason don’t feel compelled to even try to meet me half way.

But I am here.  With all my flaws. Ready to be loved.  Hoping to be understood and treated with compassion.  But people we all have to be realists in this.  Ain’t nobody ever has to eat a poop sandwich.  Not even if it has your favorite Dijon mustard on it.  Not even if it is served on the prettiest china.  Not even if the person giving it to you tells you they love you.  Because there is nothing loving in a poop sandwich.  Nothing.

Because it’s poop.  And no one ever has to eat that.