Thursday, March 31, 2011

Guest Blogger, My Son Robin

Tonight's post was written by the younger half of my dynamic son duo.  Robin is thirteen and graduates from 8th grade this year.  He is an Honor Roll Student, an accomplished musician, and was affectionately known as "Psycho Baby" by his cousins.  All through this, he was and continues to be a source of comfort, good medicine, and wacky humor for me.  I love you Son.

Hello people!  My name is Robin, although I’d prefer to be the Joker, but Mom didn’t ask me.  Heehee.  I just thought I could tell you my Mom’s whole breast cancer experience -- through my eyes.


When my Mom first drove me down to the bay with my favorite McDonald’s meal and told me she had bad news, I’m not lying when I say the first thing that popped in my mind was that she had cancer of some kind.  Well, I had two thoughts: Cancer or one of our dogs dying.  It was more like a million thoughts were going in my mind at once; I didn’t know what she was going to say.  Even after she told me that my secret assumption was right, I still cried.  It was like a giant bullet called Cancer the Annihilator shot me straight through the brain.  But after she explained everything to me and reassured me, I calmed down and resumed eating my cheeseburger.  It wasn’t that hard after she told me.  I honestly didn’t have any fear that she was in grave danger.  I forced it not to come into my mind.


The hardest thing I had to cope with was probably all the stuff she was going through as part of her treatment.  Chemotherapy.  Radiation…being behind concrete walls with a 4,000 lb. door just to keep in what they were putting into my Mom.  I was afraid that the chemo would somehow go wrong in her body or really hurt her.  Did you know that if chemo drugs are spilled it requires a hazardous material clean-up agency to come in and clean it up like toxic waste?  Whoa.


After I shaved her head, and saw my Mom with no hair, I was shocked.  I eventually got used to it and even grew fond of her new hairstyle, and the brave statement it made - “I went through cancer.  What did you do?”  I did wonder what strangers would think when they saw a bald lady walking across the street.  I knew most would think she was going through cancer treatment, but others might think she’s weird or something.  I didn’t care what they thought though.  Bullets and axes can break my bones but words will never hurt me.  When she was flat chested, it was another thing to get used to, and now I’ve almost forgotten what she used to look like with her long blond hair and big boobs.


I want to tell you, if your Mom or whoever is diagnosed with breast cancer, don’t freak out.  You might be afraid at some point, and wonder what will happen, but the best thing you can do is stand by her side and help her get through it.  To help myself, I told some of my friends, and my favorite English teacher.  My Dad and my brother and I all wore pink ribbon pins for a long time, every day.  Let your Mom explain things to you; some of it will comfort you, other things won’t.  I know if it weren’t for our family, she wouldn’t have made it through.  Any Mom facing breast cancer needs all the support she can get.   I think I helped my Mom the most when I was her gopher for anything she needed, did more around the house, kept her company, and was her Jester!


One thing I learned about my Mom that I hadn’t known before was her spunk.  I knew my Mom had “balls”, but man, this proves it even more.  She walked in the Relay for Life, and has helped a lot of people writing this extremely successful blog of hers.  She went through having a toxic chemical loaded into her, her boobs scooped out, being radiated, and the loss of two of her favorite trademarks about her self, her hair and boobs!  I don’t know anyone else who could have gotten through it better, with such a positive attitude as hers.  I’m really proud of her for that. Even after all of this treatment, prodding and poking, she still came out with a smile on her face.  I know a lot of that was because of me!  And the rest of my family.


This changed me a lot.  I look at my Mom now in a completely different way.  I now see her as the lady who went through nine months of breast cancer treatment. And that lady is my Mom!  When I become a famous marine biologizing author, everyone will say, “Oh, did you know Robin’s Mom had breast cancer? And she wrote this super cool book about it? Let’s go give her five million dollars!” [Son, from your mouth ...]


Most of all, it made me love her more, even though I missed my “fro” when I cut it off for her.  It was the least I could do to show her "You can do it Lady!"




With whatever I have accomplished and however I have failed and whatever is still out there for me, there is no greater thing I will ever do in this life than have, and love, and teach these boys.   






Wednesday, March 30, 2011

Higher Math

Re-planted pots on the front step, cheerful pansy faces, lemon balm and pineapple sage.
The mister setting on the hose, soft rain on spring flowers.
A glass container of tea brews and glistens amber in the afternoon sun.
Doves return to the front yard, every morning, every afternoon.
Petite hands that look like my Mother's stretching for notes on the piano.
Melodies I wrote like a lullaby for me, played over and over again.
A poodle out of her sweater, running around crazy naked.
Two big dog sisters, both heads in my lap, needing snout kisses from Mommy.
Three dedicated lady finches, nesting eggs that will never hatch.  I need to find them a man.
A thirteen year old son who still pats me when he gets in the car after school and asks "How was your day?" and really wants to know.
A Husband who gets pouty if he comes home and I'm not there.
A "grown-ass man" son who still texts ahead to find out what's for dinner.
A most amazing breakfast with a most amazing friend, a spiritual touchstone for me, with hollandaise.
An email from a friend who loves me and hopes we come to visit and is already fluffing pillows in the guest room.
Telling a friend who really needs a friend right now to write down 25 things he is very grateful for, and his Number 23 is an In-N-Out burger.

Maybe the trick in life is all about the right accounting,
recount what's worth counting,
and let go all the rest.

How could I change one thing, knowing it would change everything?
How good life is when you count the good, and stop anticipating the bad that may never happen.

Wouldn't take nothing for my journey now.  Maya Angelou

Tuesday, March 29, 2011

If You Give Somebody a Piece of Your Mind, Are They Supposed to Give It Back?

I got the phone call I was waiting for, from the surgical coordinator for the good Dr.  As it turns out, this lady is also the Office Manager.

She had no idea what she was in for when she called today, but was absolutely clear on the concept by the  time our conversation was over.  If you've ever wanted to vent and beat a dead horse, but did not have the opportunity, I took care of all of us today.  And it felt good.  Real good.

I am scheduled for my hysteroscopy next Monday, and must report to the hospital at 5:30 a.m.  The procedure is scheduled for 7:30 a.m., and will last about an hour.  Thank goodness I will be out when they inflate my uterus like a little puffer fish, take a poke around and some deep sea photos, and bring back a couple of specimens from deep deep in the heart of ...

Speaking of Texas, hello there Sister, you did it!  Made it through your first chemo today!  Take good good care of you and tell Judy and all those church ladies to keep the food coming.

So I have the surgical biopsy next Monday, and then the following Monday is my follow-up and hopefully the pathology results will be in.  In other words, I still have just about two more weeks of waiting before I get an answer about what's the deal with Muffy.

Let me tell you.  I don't plan on spending it the way I did the last two weeks.  This is some of what I learned.

Worry don't change shit.
Do not have any caffeine when all the what ifs running crazy in your brain are already providing more adrenaline than ten Red Bulls drank like shots.
Get exercise, walk, get out, get in nature.
Every day offers gifts, so even when you feel really really scared and have all the doors and windows locked and bolted, you have to find a way to be open enough for the good.  Don't lock out the good.  Don't miss the good because you are so focused on the bad that may never happen.
Keep your brain busy, by keeping your hands busy, doing something that requires focus and attention, like knitting or cooking or painting or playing the piano.
Limbo is not forever, although very uncomfortable during its short life.
Say what you mean.  Mean what you say.  Ask for what you need.  Ask again.  Ask again.  Ask again.

Can you believe that after all of this is over, I still have my first colonoscopy to look forward to?

Oy vay.

Monday, March 28, 2011

CMBB

So I had the big appointment today, the one that got me about one inch closer to answers I've been looking for since the first of the month.

The good news is I understand why this Lady, the gynecologist, is so popular.  She has a great personality, and instantly makes you feel as if she is listening, she cares, and she's going to take care of business.

The reality is no Doctor can take care of business if they don't have a cracker jack staff.  I think it would be easier to get in to see the President than her, and she must have an incredible patient load if her overflowing waiting room is any indication.  Today Husband and I waited almost an hour to see her, in a cramped waiting room filled with expectant mommies.

I waited a whole week just to have about fifteen minutes with her, obviously anxious and behind like the White Rabbit in Alice in Wonderland, just to have her tell me "Let's get you on my surgical schedule."

No shit.

This is where I'm at right about now folks.  I'm too far in to change horses in the middle of the stream and when I DO HAVE my hysteroscopy, I'm sure she'll do a fine job.  Once all a dat is done, I'm done.  I don't have any intention on staying a patient of that practice.  I know the Good Witch thinks the world of her, but obviously is not aware how poorly her office is run.

I understand how difficult it is these days for Doctors to cover their overhead and outrageous malpractice insurance, especially given the piddly amounts the greedy insurance companies pay them.  I understand they have to overbook to keep afloat.  I understand my Doctor is not my therapist, my Mommy, or my friend.

I am just at a point, in my life, and with my health, that I want things done in a timely and efficient fashion, I want consideration and respect, and I have no tolerance for poor customer service.

Not to mention, I've just spent a year in the fight of my life, and I am one CMBB (Cranky, Menopausal, Boobless Bitch).

Any questions?

Sunday, March 27, 2011

The Adventures of Pancake and Waffle

I have new nicknames for Flopsy and Mopsy.  Mopsy is like a pancake now, flat and soft.  Flopsy is more like a waffle, thicker, and lots of folds for syrup to collect in.  They don't look like twin sisters anymore. 

I recently started a special kind of physical therapy with my lymphedema therapist, Doris, for scar mobilization.  The therapy helps to loosen scar tissue, not just where the incision is, but inside the radiated breast.  I have places inside Flopsy that are hard, knotty and immobile.  The idea is to gently massage these areas to loosen things up prior to reconstruction, and on an ongoing basis to help prevent lymphedema.

Click here for a good explanation on WebMD all about lymphedema, if you need a reminder.

Some of the initial changes to Flopsy have gradually faded in the two months since I completed radiation.  Most of the redness, skin soreness and some of the swelling is gone.  As a side note, the hair under my arms, both of them, has not started to grow back.  Supposedly under the radiated side it never will; not sure why Mopsy's side is hairless but I'm not complaining.

The changes in Flopsy that have remained are increased pore size due to swelling, lots of lumpiness, and my areola and nipple are not as rosy brown as Mopsy.  The color is pinkish with some areas of light gray.  Underneath Flopsy, some of the speckled skin has sloughed off, but I still have some freckling and spots.  I have gently used a washcloth with sugar scrub or salt scrub on the area and it has helped to remove crusty skin.

Doris showed me how to gently massage the areas that are tightest, and how to gently pull and stretch the surface of the skin which helps to loosen scarring, and move lymphatic fluid.  The areas that are lumpy are problem areas because they can block the flow of lymphatic fluid in the breast, and under the arm too.  Doris said it's common in these cases for lymphatic fluid to collect in the breast.  She showed me how to hold Flopsy up and gently squeeze her like an orange, while massaging the surface of my skin towards Mopsy and my right arm pit.  This technique manually helps move lymphatic fluid over to the side that is fully functioning and where no lymph nodes were removed.

I do feel better after the lymphatic massages, and she suggested I have Husband come with me to one of my appointments and she will show him how to do them.  Some of the massaging is not so easy to do on yourself, you need another set of hands.

Doris wants me to get a compression sleeve, but in the meantime, she made me an upper sleeve and lower sleeve out of some tube-like stretchable bandages.  She cut one large piece for my upper arm, and then another piece for my forearm down to my hand, with a small cutout for my thumb to pop through.  She suggested I trying wearing this makeshift sleeve a couple hours at a time to see if it helped.

I tried it and the gentle compression really does work to ease tightness and heaviness in my arm.  The whole idea behind compression is during swelling the skin is stretched so much that it is not a firm surface for the muscles to contract against.  Muscles working and contracting is how lymph is moved through the vessels. (Deep breathing too!)  The compression garment acts like a "new" firm skin surface, the muscles contract and the pressure gets things moving.

Did you know that swimming is also great for lymphedema?  The hydrostatic force of the water acts the same way as a compression sleeve.  I am returning to the pool this week, and I'm really excited about it!  I had no idea it is so helpful for lymphedema, but discovered it while reading about it online.

I continue to do the exercises I've described here before, and use the stretchy exercise band Dean made for me.  Although I sometimes get sore, the more I stretch and move the area, it really helps with the stiffness.

This is an easy to follow guide for exercises after lymph node removal, prepared by the good folks at Ohio State University.  Most of these were taught to me by my physical therapist, but I like having something to refer to and found this guide which is easy to follow.  These same exercises also really help after a BLM, and with upper neck, back and shoulder tension.  Try them!

Lymphedema will always be a concern and something I need to monitor.  As recommended, I plan on ordering a medical bracelet, so in case of an emergency no blood is drawn or blood pressure taken on my left side.  Here's a great link to shop for some attractive medical bracelets!  This is really important for any breast cancer survivor who has had lymph nodes removed.  If you plan on custom engraving the bracelet, just make sure you have the following wording on it "Lymphedema Alert, No blood pressure - No needles into this arm" and make sure the universal medical symbol is on there too.

So there you have it.
The adventures of Pancake and Waffle,
and everything you wanted to know about lymph,
from your favorite nymph.

Saturday, March 26, 2011

Writergirl, Please Report to the Principal's Office, Again

I have placed myself on a well deserved time out today.  Golly gee whiz, I sure have been whiny lately.  I never was good at the waiting, or surprises.  Even the good surprises!  I am such a little creature of habit.  And as you may have observed, some a these habits are not good.  This is how it is for me - it is not the information I fear.  It is the not knowing!  It is the waiting.  I am a doer.  Give me the 4-1-1 and let me get to work, TELL ME WHAT I HAVE TO DO!  Oh dear what a lesson in what I need to work on, ever since this whole who-dee-doo with my uterus started, and the delays in getting answers!

I have spent the last week in a log jam of epic proportions, and let me tell you for your future reference if you are pondering such a log jam yourself, IT DIDN'T DO ME A DAMN BIT A GOOD AND WASTED A PERFECTLY PRECIOUS WEEK.

Mother May I, get a do over please?

No you may not.

Sometimes I have this dilemma about the blog and transparency.  Not so much when I am teaching or inspiring hopefulness or offering practical tips for Cancer Camp.  Very much so when I am stumbling.  Sometimes I am talking to you, but sometimes I need to talk to me.  I have come to feel a deep sense of responsibility to you, especially the Newbies!!  Oh dear, I am so sorry when I am not a pillar of strength and hopefulness and sunshine!

On da other hand, this is my typical take care of everyone else behavior.  One of my favorite posts was "It's Not My Job to Blow Sunshine Up Your Ass" and I often need to remind myself of this.  Maybe you still learn something even when I'm stuck.  Like "See this?  Don't do this, CAUSE IT DON'T WORK."

Your Honor, in my defense, most of life is the showing up, right?
Writergirldreams?
Here.
Please write on the chalkboard 100 times -

I was a man riding an ox looking for an ox to ride.

Friday, March 25, 2011

Spring is Sure To Follow


the first David Austin cabbage rose to bloom in the yard so far
It was one of those March days when the sun shines hot and the wind blows cold: when it is summer in the light, and winter in the shade.  ~Charles Dickens

Awake, thou wintry earth -
Fling off thy sadness!
Fair vernal flowers, laugh forth
Your ancient gladness!
~Thomas Blackburn, "An Easter Hymn"

No matter how long the winter, spring is sure to follow. ~Proverb

The day the Lord created hope was probably the same day he created Spring.
~Bern Williams

Thursday, March 24, 2011

Eyes of Violet and Signs of Spring

I met Elizabeth Taylor once, thanks to Husband.

In the early eighties, Macy's in downtown San Francisco had an unveiling you could attend if you purchased a limited edition bottle of Liz's new perfume.  Husband bought one for his Mother and one for me, and we were thrilled to attend the tea she would host.  She graciously came table to table to shake each person's hand in the room, including mine.  She was the most beautiful creature I have ever seen, and I say creature because her beauty and charisma was otherworldly, with eyes of violet just like people said.  Really.  Her eye color was the deepest violet, and she glowed in the lovely silk purple suit she wore.

She was also wearing THE diamond, the one Richard Burton gave her, that looked more like a sparkling ice cube floating in his Scotch.  What a dame.  They just don't make em like that anymore.  The last of an era of real Hollywood movie stars.

We've been drenched the past few days, hard rain and wind that lasted all day today.  I had all kinds of intentions to get out, (Hello Nani, don't worry, I'm ok), but never got out of my slippers.  Poor little Muffin the poodle hates that we force her outside in this weather.  She does her best to walk tiptoe on dainty Ballerina poodle toes to find the perfect spot, then runs like the dickens to get back inside.

I am going through a bit of a funk, intermittently down and angry, then working my way back to center.  I think all this rain may have been my fault, sent to put out the growing fire of my self pity and make large puddles that spit back at me when I stomp my foot in a tantrum.

I just don't want to do the stuff anymore, the stuff still left for me to do, still here in Cancer Camp.

I want to go home.  I want to be normal again.

I want to worry and complain about the normal stuff, like what to make for dinner, and is there enough money in the checking account, and getting ticked cause I backed into the trash and recycle bins because the boys did not put them away.  The normal stuff.  I want to have plans.  I want to go back to work.  I don't want to do any kind of surgery till I'm ready for new boobies.

I feel as if I am in some kind of limbo again, waiting for answers, unable to make a move.  I am terrible at this.  I really am.  I feel stuck.

God?

It's not that I think you owe me something.  I just can't find you right now, or my way.  I don't have a sense of you here with me like I did before.  I thought the storm was over, and now I can't see shore again and feel adrift and without you.

Sometimes it's hard to know the difference between waiting patiently and being stuck.  I am stuck in winter.  A winter in my soul Lord.

I wait inside for Spring.

Tomorrow,
no matter the weather,
outside or in my heart,
I will look for signs of Spring
and You,
and that is where I will find
my hopefulness again.

Wednesday, March 23, 2011

Don't Look

A Sister got her port in today, and starts her chemo next Tuesday.  I reminded her about applying the lidocaine cream to numb the skin over the port, and don't look when they access it.

She assured me she knew, and wasn't planning on looking, since she had already read my blog post describing the needle that fits into the port as a fish hook.

Oh dear.  Poor baby.  I wish I could be there, I would sit with you and keep you company while you are tied to the chair and the magnificent poison pours into your tender heart.  I remembered my usual chemo snack of almonds, a banana and dark chocolate covered blueberries.  Thinking about it now and imagining myself in the green vinyl chemo chair just produced a metallic taste in my mouth.

Oh the brain and thoughts and memories are powerful, ain't they?

315 posts.  That's how many I've written.  Before you know it, it will be Mother's Day again, and I will have accomplished my goal to write daily for one year in the life of a cancer patient.  Hard to believe I am only one month away from the one year anniversary of my diagnosis.

I hope the drama runs out before the Ativan does.

Tuesday, March 22, 2011

Get Up Eight

There are so many layers to this that are really hard.

The first is the cancer itself, the bad feeling in your gut, the waiting, the diagnosis, hearing the words, feeling the fear, gnawing on the what ifs like an animal chewing off its own foot to escape an iron trap.

Then there's the treatment, cancer treatment.  Assault after assault on your body and your spirit and psyche, to become cancer free.  Often at the expense of other areas of your health or physical appearance, the collateral damage of treatment.

As difficult and trying as those are, and they are, there is another constant challenge nobody talks about or prepares you for - the dashing of your expectations, the glitches, the human error and bureaucracy, and the loss of control throughout the process.

Life is chaotic.  So is nature.  Random things happen.  We have no control over our environment, only our thoughts about it.  Our biggest mistake is making any kind of assumption about how things will go, or thinking we have control over any of it.

I think I am doing really well and then some small thing happens that shakes me.  I went to receive my recent biopsy results by myself; Husband had a big meeting he could not miss that day.  I got myself there and braved through those moments waiting for my name to be called, waiting in the exam room, waiting for her to speak and tell me the news.  I did it.  Guts of steel.

A few days later my son had a band competition in a neighboring city about an hour away.  I was going by myself, as I had done many times before.  I had a feeling of absolute panic that morning, getting ready, almost not going, then driving in the rain to get there.  Worried I would be late.  Worried I would not find him.  Worried I would get lost.  Scared.  Just scared, of what I do not know.  It was brutal.  I was doing something I've done many times, but that morning, I was afraid to go out into the world.  The only thing that made me go is the look on my son's face when he sees his Mom is there.  And I was there.  I did it.  Guts of pudding.

I think this panic attack was left over adrenaline from earlier in the week.  My guard was down.  The fear I had been stuffing and keeping at bay revealed itself when I least expected it.

Yesterday when my appointment was cancelled, it shook me hard, and that initially puzzled me.  Surely I have done much harder things than this and waited for far worse.

I realize I am still making assumptions, with every piece of information I get, or whenever I think there is a plan.  I run with it, calculating all the variables like college math.  I had not accounted for the Dr. calling in sick, or her staff not making me a priority to get back on her schedule right away.  I hadn't counted on any of that.  I had a moment of devastation.  Powerless.

Assumptions.  Expectations.  The harder you hold on to them, the more you suffer.  This is such a hard thing to learn but is so classically human, being arrogant in our beliefs that we can defy the chaotic order of things.

I see now that it is a miracle when things go smoothly!  That is not the usual order of things.  Those are the miracles!

You ever look at a skyscraper or a magnificent bridge and see our human arrogance in it?  We all believe we can control and shape and conquer our world.

I am doing my best to lean into the uncertainty, lean into all that I do not have control over, while trying to keep my wits about me.  It's hard.  Really hard.

Sometimes I think I must be doing it all wrong when the glitches and detours and unexpected hits me like a punch in the gut, and down I go.

There there now, I tell myself.  It's ok.

It's not how quick you fell.

It's how quick you get back up.

Like the proverb says Fall seven times, get up eight.

I'm up.
 

Monday, March 21, 2011

No More Mr. Nice Guy

I was supposed to meet with the gynecologist today to discuss and schedule my upcoming hysteroscopy.

Didn't happen.

The Dr. was sick.

Understandable.

What really got me was when they called to reschedule, they said her earliest appointment was a week from today.  Are you kidding?

Nope.  I can call back tomorrow and see if they had any cancellations for tomorrow or Thursday, the only other days she is seeing patients this week, but already completely booked.  Otherwise, they will see me next Monday.

I got off the phone and had a little meltdown.

For the regular person, this type of thing would be a bump in the road, or a minor annoyance or irritation.  After the year I've had, I just don't have the patience or the perspective anymore.

I'm done.
I don't want to do this anymore.
I don't care what you people have to do, let's git her done.
Part the sea for me.

Am I almost there?

sigh.

Sunday, March 20, 2011

Some Days Like Sundays Are For Resting

Today was a lazy rainy Sunday, pajamies all day.  That's how we roll in this house sometimes.

Egg in the bread for breakfast.
Bites of watermelon and fresh pineapple.
Chai latte.
College basketball.
Movies from the couch, first this one,  then this one.
Muddy doggy feet.
Kissing doggy faces.
A Husband folding clean towels.

Check this out.  This is cool.  A Sister with a one woman show about being a breast cancer survivor.  She will be in LA at the end of the month.  Click on the link and check it out.

The C Word

Bravo Pam!  Please come to San Francisco!

I hope your Sunday was peaceful and restful, and full of whatever makes you happy.

Saturday, March 19, 2011

Why Not Me?

I get incredible emails and personal messages each week from Sisters who are just discovering my blog.  They are going back to the very beginning and reading from my very first post, Mother's Day 2010.


Many of them are newbies, just diagnosed.  They devour all those early posts, the ones where I am waiting for a diagnosis, the ones where I tell my children their Mama has breast cancer, the ones where my hair first starts to fall out, the ones where I can't sleep and start rambling about all kinds of things that have nothing to do with cancer.


I cry late at night when I read the messages from them and hear their stories, just like mine.  I remember those first few weeks after my diagnosis.  It's so scary.  It's so unbelievable.  I felt so betrayed by my body, and forgotten by God.


This can't be happening.


Am I on a timeout?  I often wondered.  How did this happen to me?  Why did this happen to me?  I'm not one of the sick people.


I see things so differently now.
I admit to my former sense of entitlement, based on delusion and illusion and magical thinking.


The truth is
why not me?


Did I think I was better or safer or luckier or nicer or more blessed?


Cancer doesn't give a shit.  Cancer doesn't care if you are kind to animals, or tithe in church. Cancer doesn't care if you have small children, or are newly married.  Cancer doesn't care if you've just faced some other huge tragedy in your life.  Cancer doesn't care.


You can't really be angry at the cancer I suppose.  It's not personal.  Cancer thinks it is being productive and doing its job.  It does not realize in its proliferation of self that it is killing you.


Some things that happen in life you just can't take personally, even though it is very personal to you.

When you face adversity . . . don't ask: Why does this have to happen to me? Why do I have to suffer this, now? What have I done to cause this? Rather ask: What am I to do? What am I to learn from this experience? What am I to change? Whom am I to help? How can I remember my many blessings in times of trial?  Richard G. Scott


I so appreciate every message from another grateful Sister, thanking me for my open and raw musings about every aspect since diagnosis.  They wonder where I draw my strength and courage from.


That one always cracks me up, cause I have been so scared every step, every procedure, every treatment.  I don't even know how I've done what I've done, given how much I hate the doctor's office and needles and taking medicine and feeling sick.


It must be all your prayers and lifting me up.  "Here comes another one for writergirldreams" the angels must say.


I didn't have some plan or idea about what this blog would be or mean or become.


I just didn't know what else to do,
and hoped someone
would listen.


Now I listen.  To Them.  My Sisters.

I wish I could teach a class for newbies, like a Cancer Camp 101.
Sure, I've got all kinds of insider cancer tips, oh goody,
but mostly all I would do
is hug
and listen.
  

Friday, March 18, 2011

If You Got Cancer, You Gotta Have A Good Witch

My oncologist, otherwise known as the Good Witch, has magical powers, at least over me she does.  When I see her, and when we talk, it's like soothing the colicky baby in me.  She's got the touch.

The scared little girl me calms down, and the grown up me feels as if whatever curveball cancer throws my way, she's going to be right there with me as my batting coach and agent.  I still have to swing, but she gives me direction, encouragement and tries to arrange the best deal possible for me.

"Oh my gosh, look at your hair and your nails, I can't believe how long your hair is already!  You look great.  If it wasn't for the flat chest, you'd never know to look at you, you were a cancer patient.  You look great.  I have some patients who are a year out with little fuzzy hair or still wearing wigs.  I can't get over your hair and look at those nails!"

It was great to see her too.  I gave her all the news, and we went over my ultrasound and biopsy results.  We talked about the benign what ifs, and the possible what ifs I really hate to think about.

Did you know the average uterus is about the size of a lemon?  Really makes you appreciate its stretchability during pregnancy.  So here's a little uterus 101 for you.  The inside of the uterus is lined with what is called the endometrium.  When I had my pelvic ultrasound, one of the things they looked at is that lining; for the purposes of the ultrasound they call it the endometrial stripe.

If an increased thickening of the endometrial stripe is discovered, it may be a result of precancerous or even cancerous cell activity in the uterus.  Obviously, the uterus and the endometrium are very sensitive to hormonal changes, and when a woman menstruates, the endometrial lining is shed if no pregnancy has occurred.  Sometimes if there is an over stimulation or prolonged exposure to estrogen, this abnormal growth of cells can occur.  This condition, called endometrial hyperplasia, or thickening of the endometrium, in itself is not considered cancerous,  It's usually monitored, often treated with hormones, or even lasered out.  Oncologychannel.com estimates that one-third of women with endometrial hyperplasia will later develop endometrial cancer.

You get where I'm going with this?  I am getting the distinct impression that my girly parts are going to join my breasts in NeverNeverLand.

"I mean it's not like you really need them anymore (referring to my ovaries, tubes and lemon),you aren't planning on having any more children, and if there is anything atypical in there at all, as your oncologist, I would recommend you have all of it taken out to reduce your cancer risk.  Let's just let your gynecologist do her part and let's see what we've got there, and if it is something, we'll take the next step and refer you to a gynecologic oncologist.  Even if it looks like it's something that might develop into something, it's better to be cautious."

I started thinking about my goodbye letter to Flopsy and Mopsy.  I never named my uterus, but I may be writing her a letter too.  I could call her Gladys, and my ovaries and tubes could be the Pips.  Sheesh, pretty soon here I may be the fourth girl in this house spayed - Hallie, Cassie, Muffin and Mommy.

I watched for clues on her face, to see if she seemed worried.  I've never played poker with her, so I don't know how good she is at bluffing, but she didn't seem alarmed or like she was hiding cards.  She knows I'm worried, and as Midge would say I'm "an internet whore" devouring information.  I've already started the homework and the Good Witch laughed when I told her the name of the gynecologic oncologist I had already researched is on my health plan.

"Yes, he's the man, an excellent surgeon, I'll be curious to see what you think of him if it comes to that."

We chatted rather calmly about all of it, not like the house was on fire or anything.  I relaxed because she seemed so relaxed.  She wanted to examine me too, so I took off my shirt and she poked around Flopsy and Mopsy, and under my left arm.

"Any changes as far as lymphedema?" she asked.  "How's that going?"

I told her it feels huge and awful tight to me, but my lymphedema therapist said both arms were slightly smaller, and I see her for a recheck of measurements next week.

She asked me about any menopausal symptoms or Tamoxifen side effects.  Overall I told her I thought I was doing well, except for the continuing feeling that my flora and fauna in my vajayjay still isn't right, although my bacterial cultures from my biopsy came back negative.

"That could be a Tamoxifen side effect.  How's your libido?"

"On fire" I smiled "especially after physical therapy."

"Huh?"

"Well, I have this adorable physical therapist, he's so sweet and handsome, and I feel like an old cougar around him."  Then I meowed for effect. 

She had a good laugh over that one.

"You think I'm evil?"

She grabbed my shoulders with both hands, and laughing, gave me a little shake.  "Of course not.  Ok, you get dressed and let's see, when do I see you next?' and she looked through my file.

There was a soft knock on the exam room door, I was still sitting there half naked, with flat Flopsy and Mopsy out.

"Not yet" she called out "Do not open that door, give us a minute."  I got dressed.

"I have an appointment with the plastic surgeon in mid-April, even though I don't plan on doing the reconstruction for awhile.  Just to talk about it and show her what she's got to work with here.  I'm due to see you in mid-April as well."

"Well, let's you and I meet again for your regular three month check-up after you've seen her, and we can talk about that too, unless you need me sooner.  Don't forget to get your labs done the week before you see me."

We wrapped it up, and she was out the door.

I said my goodbye's to my Vonda, and was on my way.

As I drove home in the rain, I thought about having a whole let less girly parts.

Thank goodness my biggest sex organ is my platinum brain.

Meow.

Thursday, March 17, 2011

Would You Like Whipped Cream on That? Uh huh.

T'aint easy keeping a stiff upper lip.  Not at all.  Not easy showing up for your life, every day, every single day, ready for whatever it presents to you.  Not always easy being present.

I am awake now.  This is the blessing and the curse and the blessing of being awake and accounted for.

You feel things.  You don't numb yourself to them.

You let yourself feel things and think things and see things as they are.  When life calls roll, you raise your hand and say "Here."

After the events of the last week, and then going to physical therapy this morning, when I got home I had a huge physical letdown.  My body relaxed every tense muscle, my shoulders dropped back into place, my neck felt longer.  I feel so sore and achy.  I feel exhausted, like I spent way too much time in the hot tub, without even going in.

Worry and the what ifs are useless, I know this.  Does that stop me from having a brain that works like an actuary, constantly calculating risk?  Hell no.  What helps me though is to continue my practice of seeking balance and peace.  Every time I feel the machine revving up, I head towards what calms me, centers me, reconnects me to spaciousness.

I won't tell you I'm not tired of all this, cause I am, and I ain't outta the woods yet.

Truth is baby, if you are alive, you in the woods too.  You in some kind of woods too.

Every morning
there are people,
perfectly healthy people,
who wake up
not realizing
this is their last day.

You in some kind of woods too baby.  Do sumpthin.

Ask yourself
what would you have done differently
if today
had been your last day?

Wednesday, March 16, 2011

In CancerLand, Negative is a Positive!

Whoop dee who dee do!!!!!!!!!!!!!!!

My pathology from my uterine biopsy came back negative!  Also negative for HPV!  Also negative for 3 different bacteria in my vajayjay.

That's the good news!!!!  Wheeeeeeeeeeeeeeeeee!

The "they" that take care of me are cautiously optimistic and still want to do the surgical biopsy to get a larger sample and make double sure there are no cancer cells hiding deeper.  I understand, with my recent history and all.

I have an appointment next Monday to discuss and schedule the hysteroscopy.  The gynecologist was not in today, the Physician's Assistant gave me the news.  I was relieved to find out that the hysteroscopy, or surgical uterine biopsy, can be done vaginally, they put me to sleep thank goodness, and it's considered an outpatient surgery.  I won't have to stay the night or have my tummy cut!

This is great great news, and even if they do find something lurking deeper, I feel it will have been caught early.  I hope and pray and wish it's much ado about nothing.  I've accepted my position as a breast cancer Diva, I don't wanna add nuttin else, ok Lord?  Puulleease?

Thank you so much for all your prayers and love and messages and emails and visits here to the blog to support me.  It means the world to me, and so often, when my courage and my faith is at their lowest, your presence and support is like a booster shot for me!

Thank you everybody.  Thank you so much!  Wheeeeeeeeeeeeeeeeeeeeeeeeeeeee!

Before I forget, join me in prayer for our brothers and sisters in Japan, and send your money to the Red Cross. Click here.

Tuesday, March 15, 2011

Why Would Somebody Leave a Cake Out in the Rain?

My appointment is at 11:30 tomorrow, at the gynecologist's office.  Biopsy pathology should be in.  Gulp.

Appointment with The Good Witch is on Friday, to discuss whatever the news is.  Double gulp.

I've done fairly well this last week, keeping all the what ifs at bay.  They mostly come at night, after all the boys and doggies in this house are sleeping.  Each night, when the house is quiet, the tension builds, and tonight is the worst.

I did pamper myself today, went to physical therapy even though I thought about canceling right up until I said goodbye to the doggies and locked the front door.  I'm glad I went.  Dean was so cute, I told him about my week since seeing him last Tuesday.  I was touched by the sadness on his face.

"Ok, today, I think we should forgo our usual therapy, I'm going to give you a massage to help with your stress.  I'm going to turn out the lights, and I just want you to relax and try to clear your mind and relax your body."  Yes Master.

He gave me a little pep talk while he massaged my back and neck and head, and I could feel his concern come through his hands into my body.  I'm so glad I went.  I felt a whole lot better when I left and for most of the afternoon.

I decided I needed a little retail therapy, so went to my favorite thrift shop, dashing in the rain to get inside, hoping I would find some cheap treasures.  I lucked out with four great book finds -

The Alchemist, by Paulo Coelho, which I have always wanted to read.
One Thing at a Time (100 Simple Ways to Live Clutter Free Every Day), by Cindy Glovinsky
Why I Wore Lipstick to My Mastectomy, by Geralyn Lucas
Great Songs by the Ladies, a piano book with some of my favorite ballads in it, like MacArthur Park.

After I got home, I read a little from each, and then played and sang MacArthur Park for awhile.

I will take my life into my hands and I will use it, I will win the worship in their eyes, and I will lose it.  I will have the things that I desire and my passion flow like rivers to the sky, and after all the loves of my life, oh after all the loves of my life, I'll be thinking of you and wondering why. 


I've always wondered about the great Jimmy Webb lyrics.  Did you know there is a real MacArthur Park in the city of Angels?  Someone left a cake out in the rain there.  Why would you leave a perfectly good cake in the rain?  It's a great metaphor, a lover's lament.  I love that song.


My fingernails are so long right now, when I play the piano, my nails click on the keys just like my Mom's used to when she played.


I played again tonight, not sure which I needed to hear more, the music or the clicking.

Monday, March 14, 2011

Roses and Thorns and Honey

I made myself laugh today.  After showering and washing my hair, I stood in front of my large bathroom vanity in a towel to blow my hair dry.  About half way through, I looked at myself in the mirror, and laughed out loud.

I was so used to bending at the waist and blowing my long hair dry, I hadn't even realized I was doing that today.  How funny I looked, blowing one inch hair dry, upside down.  Old habits die hard baby.

Speaking of old habits, hello Husband.

Thank you for the lovely bouquet of roses brought home to me, the bottom all wrapped in foil, just like way way back in the day.




When in doubt, add roses.  This is a good thing to know my precious boys.

Life is like licking honey off a thorn.  Susan Lenzkes


Still living.
Still ticking.
Still licking.

How bout u?

Sunday, March 13, 2011

It's Ok Lady, Come On

A Boy wanted his Mama to go to the creek today, to see the rope swing someone left there, and watch him swing.

We headed into the eucalyptus canyon close to home; I wondered if it was a good idea when the sky looked angry and a light rain started to fall.

"Uh oh, we're getting rained on, we better go back" the Mama said.
"It's ok Lady, come on" the Boy said.  Sometimes he calls me Lady.







When you get to the end of your rope, tie a knot and hang on.  Franklin D. Roosevelt


I am hanging on Boy.  It was good you made me go.

It is a sacred, holy place in there, and that is where we worshipped today, you and I.

So peaceful and quiet, except for the creek gurgling, little cheerful birds whistling and the frogs talking back, our footsteps crunching dry bark like potato chips.

While you played, your Mama made this for herself, and anyone else who needed it today.

Saturday, March 12, 2011

Letter to a Sister, A Thimble Full of Hope

Hello Jane Marie,


uh huh, a rollercoaster.  Hold on tight baby.  I am back in a white knuckle place myself. Here's what I can tell you, and need to remind myself of tonight.

Cancer sucks.  Cancer treatment sucks even more.  There is nothing good or nice or profound or redeeming about it.  Nuttin.

but something happened to me along the way.  My heart cracked wide open, I fell to my knees, I did not let my pride keep me from asking for help, and that's when they started to arrive.  All my Sisters.  All my Sisters.  I am now part of a club of the finest, toughest, most loving, fearless funny bitches on the planet.  I hate the cancer, but I'm glad I'm not alone, and these GIRLS ROCK.

In my sickness, other things in me are healing.  In this abyss, I found my greatest strength. and even without my hair and boobs and some days in my bed, my kids saw me greet each day with an open heart and gratitude and usually a joke or two.  We laughed at cancer, made jokes at its expense, all as a way of saying you will never get the best of us, no matter what happens.


I used my cancer as a teachable moment for my boys, one after the other after the other, and I know they learned how to seek balance and self comfort in the midst of grief and tragedy and disappointment.  They have had a front row seat to witness their Mom at her best and at her worst and at her best again.  My children have learned the power of resilience and love, and laughing your ass off in between all the crying.


This cancer crap has given me an opportunity to realize what was always true, my life has an expiration date, nothing is promised to any of us, every day is a gift, the good is for today, and most of what I once thought I could not live without, I never needed in the first place and I let it fall away.  I learned who loved me, and I did not call after those who walked away. I let them go.

I learned that we have no choice over the often cruel and random and chaotic pieces that life throws our way, but we can choose how we arrange and react to the pieces.  Crying and worry takes a lot more energy than laughing and loving.  Worry don't change a thing. Gratitude changes everything.  I'll take a thimble full of hope any day, over a ton of fear.


Whatever you focus on in your life becomes the focus of your life.


You have come to the right place on this message board.  Here among your Sisters.  Just keep going baby.  Expect the unexpected.  Lean into the wind.


and when it gets real scary, we'll be right here.


Your cancer is not the sum of you or your life.  Don't forget that.


Keep going.


I once wrote in my blog when talking about my Sisters, that some of us will make it, and some of us won't.  I don't know what list I'm on, and the last couple days have been dicey for me.  But no matter what happens to me, don't anybody ever say about me "she lost her battle to cancer."


Say this.


I want to love and laugh and sing and live the way that girl did, showing up for her life, every single day, even when the party was rained on. Even when.


Peace to you Jane Marie,


writergirl, that's me.  Nice to meet you.

Friday, March 11, 2011

Aunt Debbie

I tried to keep busy today, cause if my hands are moving, my brain gets involved.  That's how I distract myself.  Not easy though.  Lemme tell you.

Inside my head, there is a little girl running around crazy and wild and frightened.  She is locking all the doors and closing the shutters, turning on all the lights, checking the closets and under the bed, and then she crawls in, deep deep under the covers and waits, hugging a teddy bear and a pink lamb.

I used to whisper this simple prayer.

Let no bad happen.

Now I say,

Let no more bad happen.

My Sisters gathered around me on the message board today, lifted my name up in prayer and used my "there there now" on me.  I love you Sisters.  They wait with me.  They know about the agony of the wait, how it is worse than whatever the answer.

You are silent, dear reader.  No comments the last couple days.  You afraid baby?

Me too.  It's ok.

My sweet nephew Wolfie sent me this photo, with a text that said "You're on my fraternity's prayer wall.  LOVE YOU."





See?  That's me.  I am Aunt Debbie.

That's me.

Thursday, March 10, 2011

Another Bend in the Road, Continued

"The good news is your ovaries and fallopian tubes look fine, and your pap smear was normal as well.  That is all good news.  What we are concerned about is some areas of your uterus that are substantially thicker than the rest.  That is what I am going to biopsy today, the endometrial lining of your uterus."

So I put my feet in the stirrups and got ready for the most dreaded biopsy, way way way up there, where the sun don't shine.  U ever have one, a uterine biopsy?  Let me tell you, it hurts and you feel so vulnerable, all spread open to reveal your orchid parts.

It started with inserting an even bigger speculum, if you can believe it, to open my sacred temple and keep the curtains back during the show.  My cervix, the gatekeeper for my uterus, was dilated.  Once in, pieces of tissue are sucked out or cut out for a sample.  Before they do this, they clamp your cervix with a device called a tenaculum to hold it in place during the procedure.  Your cervix responds with a sharp cramp, like a contraction during labor.

It was my experience that neither the cervix or the uterus take very kindly to any of this, and complain with intense cramping and lower abdominal pain.

She suggested I use slow deep breaths to get through the procedure, like the breathing I learned in Lamaze.  I did the breathing, and tried to focus on my breath and the sound of my breath, while my uterus and cervix fought valiantly against the torture and invasion.

Husband sat beside me, and I thought about the last time I gripped his hand this tight while breathing loudly and rhythmically, with a doctor between my knees.

Husband.

I often wonder what you're thinking.  I often wonder how you feel watching me go through this.

I see you quiet and steady yet shaken, few words, a terrible poker face no matter how hard you try.

I close my eyes, I breath through the pain and discomfort and uncertainty.  Thank God before I left home, I took the ibuprofen and Vitamin A.  Maybe I should have taken Ativan and Vicodin, a little Atta Girl Vicotini.

About ten minutes in, I weep.  She patted me.

"Do you need me to stop?"

"No" I whimpered.  "It's not that, it's just..."

"I know" she said gently, "You've already been through so much, and I'm so sorry you are having to do this too."

I tried not to sniffle and whimper, but the tears burned my face and choked in my throat.  I felt dizzy and sick.  I thought about what the Good Witch said, about taking things one step at a time and not getting ahead of myself.

"Just a couple more minutes to go, then I need to cauterize the areas I cut to stop the bleeding.  Once I make sure the bleeding has stopped, we will be done.  I was able to get a good sample."

I felt the burn and the sting.  Even after it was done, and all instruments of torture were removed, I was still deep breathing.  The cramping stopped, my body relaxed, another hurdle jumped.

"It will take about a week to get the results.  Let's get you scheduled to see me next Wednesday, and we'll go from there.  You may have some cramping this evening, and some spotting the next few days.  Don't be alarmed if the blood looks rusty; I used some iodine to sterilize the area.  I recommend you take more ibuprofen the next day or two, and get some rest."

"Do you have any pads?" I asked.  "I got rid of all that stuff."

"Sure" and she opened a drawer and handed me one.  She gave me an empathetic look and small smile.  "I'll see you next week, and if I hear anything sooner, I'll call you" then she left the room.

I stepped down from the table and Husband handed me my panties and pants. I put the pad inside my panties, and got dressed.

I looked at him, and thought about us as happy teenagers.  He was such a sweet lovesick thoughtful boy, and would often bring me a rose to school, the bottom of the stem wrapped in foil.  He would present it with pride and hopefulness.

He does not realize that his reliable presence through all of this, is as if he is still handing me roses.

Their petals are scattered at my feet, and soak up my tears.

Now, we wait.

Wednesday, March 9, 2011

Another Bend in the Road, Part One


You may remember this photo I took while on a walk through my neighborhood.  It makes me peaceful thinking about that day, how good I was feeling, and what a great walk it was after so many days of rain and gray weather.

I stopped for a moment there, looking at the bend in the road, and it wasn't long after I discovered this quote I posted recently.

A bend in the road is not the end of the road, as long as you make the turn.  Unknown


I have come to another bend in the road, dear reader, and struggled very hard today to make the turn.  It happened this morning when I received a call from my gynecologist's office to let me know there was something of concern on the ultrasound of my uterus.  A suspicious something on the transvaginal railroad.  She'd like to biopsy it.  Today.


I said no, well, I thought about it.  The scared little girl in me who has had it with cancer camp wanted to say no and run like hell.  And I can run like hell now without my fat bunnies.


"Ok" I whimpered.  She told me to take at least 600-800 mg of Ibuprofen prior to the procedure, which she said will be uncomfortable and hurt, and will result in some cramping and bleeding.


I did her one better, digging a leftover bottle of Vitamin A (Ativan) out of my chemo bag of tricks.  For breakfast this morning I had a banana, 800 mg of ibuprofen, and one Vitamin A.


I put the phone down.  I looked around the room.  It wasn't a dream.  I was awake.  I'm having a biopsy today.  For something completely unrelated to breast cancer.


Deep breath.  Deep breath.

I emailed the Good Witch right after the phone call, told her the news, wanted her in the loop, but mostly her reassurance.  She got right back to me, reminding me not to get ahead of myself, and we need to take this one step at a time.  First step is the biopsy and results.  She asked me to make an appointment with her a week from Friday, everything should be in by then.  She will get her own copies and we will discuss this face to face, just like we always do.

Hang in there, we don't even know what it is yet...or even if it is anything.


Ok Doc, Ok.  I'll try.  She's my Good Witch.  I listen to her.


Next I messaged Husband, who wasn't even at work yet.  I would need him today.  He messaged back quickly saying he'd leave work at noon so he could go with me.

I almost called Dr. Lotus.  I wanted to hear her voice, I knew she would talk me down from this emotional ledge I was on.  I hesitated.  I didn't want to bother her and I didn't want to bawl like a baby on the phone.  I didn't make the call.

I wanted to talk to my peeps, Vonda and KareBear and Kitty...  I didn't make those calls.  I figured I'd be in there soon enough.

I sent out a few text messages to Midge and my brother Ronald and The Senator.  I wanted to call Duncle Dody, but wasn't ready to speak of this.  That is one of the great things about texting.  You can deliver the message without having to say the words out loud.


I got showered and gave Muffy a good scrubbing since she would be the center attraction today.  I got dressed, took my meds, and was ready for whenever Husband would arrive.  Now I could have a good cry, and I did.  I lay on my bed and hugged a willing concerned scruffy poodle. She always licks my port scar whenever I'm wearing a shirt that exposes it.  I cried.  She licked.

There there now Mommy.  I don't know what's the matter, but let me lick your owie and make you better.

I could not believe I was going in for a biopsy today.  I am on the diagnosis train again.  This is unbelievable.  How in the hell did this happen?  This can't happen like this!

I started thinking about my post of just last night.  My great little metaphor about when cancer is in one hand, how you have to find the courage to look into the other hand and receive what is offered to you, make the journey.

Can some bunny tell me, what if you have cancer in both hands?

What if after almost one year of treatment and still recovering and healing, you receive a whole new cancer diagnosis?

Talk to me God.  Send me courage.  I ain't got but maybe an ounce left.  Maybe a thimble.  Maybe just a whisper.  Talk to me.

Help me Lord, lean into the turn.

Tuesday, March 8, 2011

In My Other Hand

There is continued adjusting to this phase of self.  I realize this is my transition body.  It won't always look this way.

It is though, the body I live in now.

I get compliments on my hair frequently.  Even strangers talk to me about it, giving compliments like "I love your sassy haircut."  They think I've gone all Pink or Hallie Berry or something.  Thank you, I say, I earned this hair and I tell em how. 

I notice when I spill food while eating now, it drops onto my lap.  My breasts no longer provide a shelf for drips of salsa or mustard or egg yolk.  I am not using Spray and Wash on my t-shirts and blouses now, and I'm sure Husband misses the fun of pointing out the spots midway through a meal.

I don't feel like a girly girl right now, although I am enjoying my Barbra Streisand fingernails.  I feel a bit like a tomboy with the super short hair and no boobies, and diminishing estrogen.

I am beginning to understand Mother Nature's use of estrogen, keeping us soft and accommodating, gentle and compromising, during the child-bearing, child-raising years.  Estrogen adds a filter and a buffer, like rose colored glasses and a network censor.  Estrogen encourages selflessness and patience with the opposite sex and in general.  Estrogen is a peacekeeper.

No boobs, no big pageant hair, and no estrogen? Isn't that three out of four of the ingredients needed to make explosives at home or start a revolution?  I hope Homeland Security is not monitoring this blog now.


I miss my boobies, day to day.  I miss their flounce and their bounce.  I miss their buoyant effect and their effect on boys.  I miss stuffing them into a bra, and making all the necessary adjustments.  I miss them tumbling out of a bra at night.  I miss them kindly hiding my view of my Pooh Bear tummy. 

I am transitioning from former blond brain who frequently never made her own priority list, to platinum estrogen-less brain who is now at the top of her own list. 

"Yes" used to fall from my lips without consulting with me first.  I am getting very good at "No" or "That doesn't work for me" or "This is what I'd like to do."

I'm not afraid to stick up for myself or you not liking my answer.  I ain't worried about messing up the hair, or boobs knocking me out if I have to give chase.

Fame is a vapor, popularity an accident, and riches take wings. Only one thing endures and that is character.  Horace Greeley


I've graduated from vapor to granite Horace.

Let me tell you something important I learned.

If you are diagnosed with cancer,
you will stare into your hand
and mourn all you will lose
and fear you will lose.

The miracle happens
when you look in your other hand.

Cancer comes with an offering
of a spiritual journey,
if you are willing to take it,
if you have the courage
to look into the other hand and see it there.

Listen real close to this next thing.

How blessed are those
who see the blessings
and take the journey
offered precious every day,
without ever having to hold cancer
in the other hand.


 

Monday, March 7, 2011

By Day, One Way, By Night, Another

My subconscious has not updated its files.

When I dream, I am my old self, long hair with fat bunnies, all working parts, and nothing that aches or hurts or is numb.  When I wake some mornings, before I open my eyes, there is a moment where I am still the self in the dream.

I open my eyes.

I wiggle the toes of my right foot.

I raise my left arm and extend into my farthest reach.

I lift up my nightie to peek at my chest.

And then I realize,

the other was a dream.

Saturday, March 5, 2011

Working Out the Kinks

I had a good wrap up to my end of the week appointments, starting with physical therapy on Thursday.  I met with Doris first, my lymphedema therapist.  She took measurements of various places on both my arms and hands so she could compare them to the measurements we took late last year.  I was happy and surprised to hear that both arms, and hands, were slightly smaller, only by a centimeter or two here and there, but smaller.  It's very strange, my upper left arm feels huge and very puffy, but it measured smaller than it was before.

I talked with her, as Dr. Lotus recommended, about massage techniques for Flopsy to help loosen the scar tissue that was a result of radiation.  Doris said we don't want to rough her up too much just yet, but in two or three weeks we can start a type of physical therapy called scar mobilization.

Right after my appointment with her, I met with Dean.  He focused on the vertebra between my shoulder blades, T3, and up into the base of my neck, T1 and T2. He explained that when the muscles there are tight it pulls on the vertebra, causing them to protrude.  He said it's common after a BLM to hunch forward, shoulders raise, and head pulls forward too.  All of that puts lots of extra stress on T1-T3.  I think I have the double whammy of having had large breasts prior to getting the BLM.  I know I was getting a little hump from carrying those big girls around.  It was confirmed when Dean was massaging T3, it really feels like it pokes out when he massages that area.

Dean said I'm still young enough that with massage and posture correction, we can get the spine to pull back some and straighten up.  He showed me all kinds of exercises to do, and how to make a great little exercise tool with tennis balls.  You put two tennis balls together and wrap them with athletic tape, and you get this thing that looks like a dog toy.  You lay on it, right where T2 or T3 is, and it puts pressure on the muscles, but not the spine.  It's almost like giving yourself a deep tissue massage.  I'm going to try it, plus I love a good craft project.

Physical therapy is one of those things that hurts so good.  I usually feel sore and a little light headed or even dizzy after a session, but so much better the next day.  Dean knows I want to return to work in mid-April or so, and he thinks we can make good progress over the next month.  Come on foot!

In the aftermath of the BLM and lymph node removal, I am beginning to understand it's not just the removal of your breasts and surgical scars you need to recover from.  It's also all the affects this has on your muscles, nerves, and spine.  I think the physical therapy is really going to help, and from there, I will be going into the Cancer Wellness program at the same location.  I'm looking forward to learning a weight training routine for myself; I think it will be important for my upper body strength, and maintaining flexibility, especially in my left arm.

I notice that if I don't work my left arm and shoulder, it really tightens up and either gets painful or extremely numb.  The lymphedema risk will always be there for me, and it's something that I will always have to monitor.  I do plan on getting fitted with a compression glove and sleeve for the left arm, as recommended, but not till after I've lost some weight.  It's not really necessary right now unless I will be flying, which I don't have plans to do anytime soon.

My week finished with a Friday meeting at the Cancer Center with KareBear, the oncology nurse navigator for the Cancer Center, who just completed ninety days on the new job.  Congratulations!  We met to discuss volunteer opportunities for me at the Center, and she loved the idea I had for teaching a writing/journaling class for breast cancer patients.  The class would focus on writing and journaling your way through breast cancer treatment, and how to use a blog to keep your family and friends informed.  She thought it would be great if we could also create a monthly support and writing group for breast cancer patients.  I am very excited about this.  We left it that I would write an outline and proposal for the 2 hour class, meet with her again in two weeks, and then we will go from there to see about getting it scheduled, hopefully this summer.

I am very happy that the Cancer Center where I received treatment is actively trying to create support programs on site for their breast cancer patients.  With all the great care that I received there, I think the one thing that needs improving and development are the other parts of treatment that have more to do with the mind/body connection.  Not to mention the "Sister" connection.  I think really good things are going to happen there, and I hope I can be a part of that.

I shared with KareBear that I was feeling unsure of how I might be received or perceived, given that I'm not an RN or a therapist.  She reassured me I have major credibility as somebody who has gone through it.  I have to agree with that, and I so appreciate how much she values my opinion and experiences.  I think that every Cancer Center should have some kind of mechanism or focus group to get patient input and suggestions on how to improve care and service, cause the truth is, nobody knows this like we do.

Ask us what we need, ask us what would make it better, how you can do it better, and we will tell you.

Just ask us.


    

Friday, March 4, 2011

Bloopers and Just Damn Funny

I've got some funny stuff to share with you, the first one courtesy of the medical center where I received treatment.  A letter was just received stating:

Dear Ms. Clay,
Our records indicate that based on your screening mammogram performed on April 7, 2010, it is time to schedule a routine screening mammogram.  This is especially important because a personal history of breast cancer is sometimes associated with an increased risk of developing breast cancer.


Dear Medical Center,
My records and my flat chest indicate that I no longer have breasts.  Thank you so much, I'll get right on that.


How bout this one, I really got a kick out of it.  It was shared by my friend WagonWifeDesigns, after her best friend took a ride on the transvaginal railroad:


This girl can make anyone laugh about anything, especially when she is nervous. She had to go for the internal ultra sound and this is what she said to the tech when she was finished."Doesn't this mean you have to buy me dinner?


Damn.  I wish I had thought of that.  I will file it though for future use.  Thank you Debra for sending it, and thank you Sue for saying it.


This next one also had me laughing out loud, from my friend M1 (hello MeShell my belle, a reply is forthcoming), forgive me for sharing this, but I HAD TO SISTER, IT WAS TOO DAMN FUNNY:



BTW, in hopes of making you smile, you inspired my husband to name my tits..... as a nod to your hilarious practice.  He has dubbed them "perky and quirky".  Quirky is the left one, since she is causing all this fuss right now.  He said "quirky isn't a bad thing... it just means she's different, and since you are different, it's all good.  But if she tries to kill you down the road, she's outta here... and if you come back BRCA positive... perky may have to join her if you are okay with that."   I told him I'm okay with that.  It will suck and I will cry and I will deal with the loss... and then we will replace them with bionic boobies.  Robo-boobs.  We have the technology (insert pictures of Lindsay Wagner jumping up on building roofs here)......
I cannot tell you how hard I laughed at this, and was deeply touched too!  Well hello there Perky and Quirky, nice to meet you.  I love love loved that!!!


Robo-boobs?!!  That is freakin funny and I'm stealin that too.  I pray and wish and hope that worse does not come to worse, but if it does honey, there's a T-shirt for that.  It says:


Yes, these are fake.  My real ones tried to kill me.


Life is funny, id-in-it?


I'd be crying my eyes out,


'cept I'm too busy laughing my ass off.


Does this post make my butt look smaller?

Related Posts Plugin for WordPress, Blogger...
Site Meter