Monday, January 31, 2011

Safe in the Fold

I had breakfast with Sisters late this morning.  A group of them who met in a "newly diagnosed" class they attended together, and decided to start meeting outside class.

I met one of them in cyberspace on the Y-Me message board, and when I posted recently asking who was in the bay area because I'd like to start a support group, she responded.  She graciously invited me to attend their first breakfast together, and I was thrilled to.

They are in chemo now.  As you know, my treatment is done.

It did me good to sit at a table with them today; they speak my language.

I do my best for you blessed people that have never walked this path, to try and tell you the story of what it is like.  Sometimes I think I come pretty damn close, keeping in mind that the difference between having cancer and empathizing with someone who has cancer is as wide as

the grand canyon.

There was no canyon for me to shout across today.  I could have whispered.

In fact many times I did not speak at all, just nodded my head.  Nodded my head again.  and again.

This morning, I was safe in the fold, my Sisters and I.  I am grateful they included me, a stranger, who has come out the other side of treatment.

I saw in their tired, fearful, fragile faces a place I have been and made it out of.

There there now, I wanted to say.  There there now.

Nobody should ever have to face and deal and go through the shit we have been through.  No bunny.

Effing cancer.

Every now and then I need to say it again, but it's spitting in the wind.  I didn't mean to rhyme that.   Sheesh.

Cancer sucks.  The big one.

I would never ever wish this on anybody else, and yet

I'm glad I'm not alone.

Safe.

In the fold.

Thank you Tmack for including me.  Thank you.  I saw the tears you held back today.

There there now baby.  There there now.  Live Girl.  That's how you defy all the scary parts.  You hold on as tight as you can and you scream your lungs out and you live.  Live every precious day, and sing as loud as you cry.

Remember what I told you this morning Tmack, what Husband said to me?

http://www.writergirldreams.com/2010/12/funky-tink.html

There there now.  Live.

Sunday, January 30, 2011

It's a Party for Bloggers, and Find me on Facebook (gulp)

Logo2011small

http://awhimsicalbohemian.typepad.com/a_whimsical_bohemian/2010/12/annoucning-the-fifth-and-final-one-world-one-heart-event-.html

I found out about this fabulous cyber party for bloggers on my friend Constance's blog, Rochambeau.  I plan to participate; it sounds like a great way to connect with other bloggers.

I have three affiliations now!

Blogger.
Sisterhood of the Cancerous Breasts (the fictional sorority I created).
Facebook.

I did it.  At the urging (dare I say PUSHING and dragging) of my son Batman, I have created a page for my blog on the social network.

If you are a Facebook member, please say hello, and spread the word to anyone you think may benefit or enjoy my blog.

Have a great Sunday!

Saturday, January 29, 2011

Unless I Need Her

I've been thinking about this since my appointment yesterday, the new routine with The Good Witch.  I'll be seeing her every three months now, unless I need her sooner.  When I was talking to Husband about it tonight, I realized this was something I needed to tell you.  This was another important something to let you know about, another surprise on this path of surprises.  It's something I didn't expect, and nobody warned me about it at Cancer Camp.  I wasn't prepared for it.  It sneaks up on you, but I'm sure is common among cancer patients.

Letting go of your attachment to your oncologist.

She isn't family.
We aren't friends.
She is though as important to me and held in the same high esteem as I imagine the passengers of Flight 1549, the plane that landed on the Hudson, feel about Captain Sully.

I know from interviews I saw, he does not consider himself a hero, just a pilot doing his job.  I believe this is probably how The Good Witch sees herself, that there was nothing heroic or exemplary about what she did for me.  It was all part of her doing her job, the way she does for all her patients.  I don't know what it's like for her when a patient finishes treatment.  She must feel satisfied she did a good job but doesn't spend much time thinking about it given she still has so many other patients needing her care.  I can only tell you how it feels as the patient.

It's hard to let her go.

I am thrilled to be done with treatment, but I feel a little lost without my team, and mostly her.  I know I'll be ok, I have so much support, and if anything comes up, I can just phone in and make an appointment.

I will miss her presence, seeing her fly through the halls, juggling all of us in high heels no less.  I will miss her silence and attention, waiting for me to talk about what was on my mind.  I will miss making her laugh at my cancer material.

I know where she is if I need her.  It's a good thing when I don't need her, she is an oncologist after all.

It's just that

I'm going to miss her.

I already do.

I am her patient.

In my life she is my Captain Sully, and I am only one of her many grateful passengers.

This is what it's like to be a cancer patient in her care.

Friday, January 28, 2011

To The Good Witch then Sliding into Funky Town

I took a trip to funky town today, didn't start out that way, I was happy to be seeing The Good Witch this morning, and my Vonda.  I wrote out subjects I wanted to discuss during my appointment on an index card so I wouldn't forget anything.

It was great to see all the gang at The Cancer Center, and it sure felt good to be waiting in the waiting room for a follow-up visit, not chemo or radiation.  I am on the other side of treatment.  It is still sinking in.

The Good Witch bounded in, and looked as happy to see me as I was to see her.  The beginning of our conversation always starts the same way, I am in a chair, and she is talking to me while washing her hands.  Funny the things you become accustomed to during treatment, the things that become your ordinary.

"I love your hair, it is so cute, and the color is great" she exclaimed, and got up from her chair to take a look, and at the back too.  She patted gently "and it's so soft.  I think you look great in short hair!"

"Just so you know" I said, "so there is no confusion, all this up here" pointing to the white streaks in bangs that are fighting their way back, "this is not gray, it's platinum.  You got that?"

She laughed hysterically.

"I'll make sure the memo gets around" she said.

We jumped right in to my list;, glancing at it I thought it looked more like a grocery list, from hell I suppose.

Gynecologist.
Ringing in my ears.
Neurontin.
Zometa.
What happens now?

I asked her for a recommendation for a gynecologist, since mine is in the city; at the time I had the boys I worked in the city so it was convenient.  Now I'd like to find someone local.  I told her something isn't right in there, inside muffy.  No, not Muffin the poodle, my muffy, as my mom used to call it.  Something hurts, way in there.  She said it's possible I could have a lingering bacterial infection from when my blood counts were low, or that the mucous tissue may still be agitated from chemo.  It could also be hormone or lack of hormone related.  [I made an appointment for next week when I got home.]

The last couple of weeks, I've been having an intense ringing in my ears.  I don't notice it when there is a lot of activity around me, like the dogs or the boys watching TV, but in the morning when it is very quiet, the high pitched ringing is intense.  Anytime it is very quiet, I hear it.  The Good Witch said it could be a few different things, but is often caused by medications.

"You don't think it's the Sam-e do you?" she asked.  She knows I swear by that stuff.

"Oh shit, it better not be, are you kidding?" She went to look it up and came right back.  "Well I don't see anything about it there, I am wondering if it's the Tamoxifen.  Not a usual side effect but we need to rule it out."

Ok Doc.

"I'd like you to stop taking the Tamoxifen for one week, see if there is any change, and then resume it.  Let me know what happens."  I did notice my blood pressure was up at check-in, and I know that can be a side effect.

I asked her about the drug Neurontin, often prescribed for neuropathy.  She said it's primarily for pain but we could give it a try.  She said common side effects are fatigue and constipation.  "Does it help with balance?" I asked.

"No, primarily pain relief associated with the numbness, tingling and burning."

"I don't really want to start another medicine, I'll give myself more time and see what happens.  I am more worried about the balance and swelling, and if it doesn't help with that, I'll wait."

I told her after my fall I've been a little spooked about falling again but she still thinks the neuropathy is going to resolve itself.  She is not sure what is happening with my right arm, and the numbness through my upper back, neck and shoulders.  Possibly a pinched nerve or some kind of shift after surgery due to hunching forward, or overcompensating with my right.

"Should I continue with more physical therapy?  It did give some immediate relief, but not long term."

"It can't hurt, let's give it a try."  She wrote up the order.

"I remember you saying I'd be getting the Zometa every six months, so am I due now?" [Refer back to my post about "Zometa Flu" and getting an IV of Zometa to protect my bones.]

"Actually I have discontinued that for my patients that were pre-menopausal at the time of diagnosis.  Some recent studies released said it really only made a significant difference for post menopausal women."

Check.  No more Zometa flu.

We discussed what was still happening with my right side, and she suggested if I was really concerned, we could do a brain MRI, just to rule out stroke or tumor, but she really didn't think anything would show up.  She still thinks what is happening with the neuropathy is related to the Taxol, and my upper body and right arm stuff is muscle or spinal related.

"Hell no Doc, I'll be patient, no more tests and poking for awhile, ok?"  She nodded.

"That's fine, let's give it more time, you are still only four months out from chemo and three months out from surgery, with radiation on top of all that.  Let's give it more time."

There was one other thing I wanted to ask her about.  I told her I had not heard from my primary care physician since she gave me my diagnosis.  Was it unreasonable for me to feel a little hurt about that?

She smiled.  I know she gets a kick out of me, and I was interested to hear her answer, from the doctor's point of view.  She got a thoughtful look on her face, and said she'd like to have more contact with her patients too, but the nature of medicine as it is now makes that extremely difficult.  I understood, I know that doctors have to overload the number of patients they take care of to make up for how little the insurance companies pay.

I'll bet this is a common problem.  I still think it's a shame.  It's almost like if you aren't going to see your doctor, you fall off their radar because there are so many other patients to take your place.

We wrapped it up, I don't see her again for three months.  This will be the routine from now on, unless something comes up that I need her sooner.

As I left there I began to feel very tired.  I'm going to miss that Lady and Vonda too.

I ate a light lunch when I got home, then started to feel very melancholy.  I went upstairs and thought I'd lay down awhile.  I sank into my bed, as some of the words like tumor marker and brain MRI, replayed in my head.  I felt really sad but didn't cry, and fell asleep with a poodle curled around my ankles.

Every now and then, I still can't believe I had cancer, and this is part of my story now.

It's still so hard to believe.

Thursday, January 27, 2011

The "C" Word to The "F" Word to the "E" Word to the "P"

Maybe the hokey pokey IS what it's all about.

I am making my way through the alphabet after the "C" word.

I developed a deep appreciation of the "F" word after it, especially when you combine the two.  Effing Cancer.

Now in this next phase, I am beginning to understand the importance of the "E" word.

EXERCISE.

In this couple of weeks since completing treatment, I am learning the distinct difference between surviving and recovery.  I survived my treatments; I am hopeful and confident that the cancer is gone.  I never really understood until now how big the task of recovery FROM TREATMENT.  First, if you're lucky and with a lot of courage, prayers and hard work, you survive the cancer.  The job is not done when the treatment ends.  Now I begin the challenging work to regain the areas of my health that were excellent, but became the collateral damage of treatment.

I couldn't wait to finish those nine long months.  I see now I was missing the subtle hints along the way from The Good Witch and Dr. Lotus that RECOVERY will take as long, or longer, and will be slow and incremental.  I get it now as I discover, the hard way, the balance between pushing, and pushing too hard.  My brain and my body crave the release of a strenuous aerobic walk, and I feel so empowered tramping through my neighborhood and up the hill.  The painful impact on my muscles, healing wounds, and feet is considerable; some nights I can't believe how many different areas of my body hurt.

I am going to switch up my routine for awhile to moderately paced walks on level ground, bypassing the hills.  I've also found my local library a great resource for low impact exercise DVDs, like yoga, and you haven't lived baby until you've done this one:

http://www.amazon.com/Richard-Simmons-Silver-Foxes/dp/B0004Z32ME

Fun aside, the monumental challenge ain't over yet, and it's a party crasher when all I want to do is celebrate and resume my life.

It doesn't work like that.  I've got a long way to go.

I remind myself to be grateful for the small wins every day, and thought of the Lao Tzu proverb The journey of a thousand miles begins with a single step.

Step.  When what you long to do is run, or even better, fly.

I guess I need to skip ahead to the "P" word.

Patience.

Wednesday, January 26, 2011

Touchstones


As they grew up, most of their childhood toys were donated, or given away to friends.

Some things, from when they were little boys, I could not let go of.

This was one.


A castle, given to eldest son, then passed down by him to his little brother.

All kinds of wishes and dreams and fables were told about this castle.

Magical creatures thrived here in this tiny kingdom.

Unicorns and dragons and fairies.

I remember there was always a princess, and my boys always gave her blond hair like Mommy, and there was a prince with a shield and a sword.

I set the castle out in the garden, next to the gurgling jar fountain.  The snow-in-summer plant invaded, reminding me of Sleeping Beauty when a forest of briar guarded a sleeping kingdom.

What does this have to do with breast cancer, you ask?

It's just that sometimes, you need touchstones to remind you, that you are still you,

of the life you once led,

once upon a time,

long before anybody ever said to you,

You have cancer.

Tuesday, January 25, 2011

Keep the Faith

If a blade of grass can grow in a concrete walk and a fir tree in the side of a mountain cliff, a human being empowered with an invincible faith can survive all odds the world can throw against his tortured soul.  Robert Schuller

I think this is a very nice quote about the power of faith, in the highest expression of itself.

It must really be something to have that kind of faith, the kind that can move mountains, with a big huge choir singing in the background.

My faith is not invincible.

There are moments when my faith is fragile and delicate and fleeting, like a hummingbird.

This though, for me, is the real beauty of faith.

It does not have to be invincible to survive the odds.

Faith is so powerful, that even faith hanging on by a thread, is enough.

Every day I walk a neighborhood I've lived in twenty years,

with these new eyes
and this new heart
carried on these tired heavy feet.

Everywhere
every day
I see the signs meant for me.

Keep the faith.

God is near.

Monday, January 24, 2011

Trail of Crumbs

I thought it was cute that my Duncle Dody said that when I walk in the forest, I should leave a trail of crumbs like Hansel and Gretel so if I fall or something again, you would be able to find me.

I stayed on sidewalks today, walking through the subdivisions next to ours, past all kinds of neat track homes, each with their own little touch in yards that otherwise would have looked the same.  There are flags and fountains, lawn ornaments and flower beds, and mini vans with car seats parked in driveways.

I saw a bumper sticker on one of them today that I thought I must tell you about.

What if the Hokey Pokey IS what it's all about?

Like most subdivisions, most of the neighborhoods are deserted, left for the day by commuters who won't return till dinner.  The occasional car passes, but I rarely see anyone while out on my walk of the side streets.

I begin with my headset on, to get revved up, shuffling songs I've downloaded on my nano Ipod.

Then for most of the walk, I take the headset off so I can listen to what's around me.
Happy busy birds.
Breezes tickling wind chimes.
Bare drooping branches of willow trees making percussion, like a brush on a drum when jazz is played.

The sun was hot on my face as tears spilled into the corner of my lip, and I could taste their saltiness like the ocean.

There are aches and grief and stress and fear that my body has been carrying for me, and with each step, I release a few, falling off me, littering the sidewalks.

When I was in treatment, I was focused on getting through it and getting it done. I couldn't completely process the magnitude of this while trying to accomplish the magnitude of treatment.  I couldn't allow myself the fullest expression of the grief or hurt or fear or disbelief as it transpired.

In the quiet and the hindsight of these solitary walks, I am processing now, debriefing after this mission, working through it and letting it go.

I don't need to worry about dropping little crumbs.  You will find me if you follow the trail I'm leaving behind, the memories and the milestones, the glory and the glitches, neatly folded like origami, falling out of my pockets, or kissed and thrown into the air like when you release a dove.

On the street, on the sidewalk, in the gutters, hanging from trees, pieces of my journey, I am leaving behind.

Look for them and follow.  That is how you will find me.  Unwrap some, this is what you will see and hear.

You have cancer Debbie.
How do I tell my children?
Your tumor is 5 cm.
You are Stage III.
You can count on your treatment taking the next year of your life.
We will need to remove your left breast, you may want to consider removing both.
Your lymph nodes are involved.
You will need five months of chemotherapy.
You will lose your hair.
Your port is tangled up inside you, we need to do surgery again and put another one in.
Your second port is getting infected, it needs to come out.
Your PICC line has failed.
You will need six weeks of radiation.

There is a reason I push so hard and walk so long each day.

I have to.

I need to release my body of all this baggage carried in its obedient duty to me.  All the months it stored these thoughts and feelings and reality in muscles and tissue and cells, taking over when my brain was overloaded with the gravity of cancer.

Thank you for all the times you came here to listen,
and still do now,
following my trail of the things I leave behind.
I follow the trail,
the one you left for me in case I forgot how to get back home
from this place I have been.

There were many nights
I would have given up,
if not for the candle in the window
you lit each night for me.

Sunday, January 23, 2011

Is It Hot in Here?

So after dinner this evening, I was playing the piano, and started to feel very warm.  I ignored it.  Grabbed a book, started to read.  Warmer.  Not much later, my heart was racing, my cheeks felt hot, my chest felt hot, and my stomach a little nauseated.

What the hell?

I can't be flashing already, I only started the Tamoxifen this week.  Come on, are you kidding me?

I went into the bathroom to take a look at myself in the mirror.  Yup.  Rose red cheeks.

Oh my gosh.  I am flashing.

Huh?

Then I thought about the dinner I made tonight.  Shrimp with basmati rice, and zucchini, broccoli and cauliflower, sauteed with coconut oil and curry.

"Is curry a stimulant?" I thought.

I looked it up and found all kinds of articles about certain foods that may trigger a hot flash, and curry was mentioned in several of them.  Everyone is different, and you may need to keep track of your own responses, but here are some of the common foods to be aware of.

Food That May Trigger a Hot Flash
Spicy foods, including chili and curry.
Refined Sugar.
Caffeine.
Alcohol.
Hot drinks.

Tips to Cool Down Or Avoid a Hot Flash
A cool drink or shower.
Avoid the sauna, hot tub or even a hot shower.
Wear cool, loose fitting clothing.
Keep your rooms cool, open a window, have a fan blowing to circulate the air.  At night, keep your bedroom cool.
Acupuncture.
Deep breathing.
Yoga.
A No. 209 gin martini, stirred, chilled glass, olives, served by Josh Morrow, in a towel.

http://www.fanpix.net/gallery/joshua-morrow-pictures.htm

Ok, you caught me.

That last one goes in the "Guaranteed to Trigger a Hot Flash" column.

Saturday, January 22, 2011

Baby Your Radiated Skin and Body, Baby

It's a week after finishing radiation, and although the pain and burning is better, I am still tending it like a newborn.

I did try the Lindi cream, but my skin is still too sensitive and although it moisturized the areas I applied it to, it stung.  I would recommend the Lindi cream during chemo, when extreme dryness of the skin, especially the face, is a huge side effect.  During radiation, Miaderm was great, but at this point while my skin is still really reacting, Aquaphor has worked the best to sooth my skin, moisturize, and calm the burn.

http://aquaphorhealing.com/

I slather it on like butter cream frosting, and then put on a very soft cotton, loose fitting shirt.  It's messy but it feels good.  This also works great on your feet, if they are dry or your heels are cracking.  Slather on the Aquaphor all over your feet before bed, put some socks on, and you won't believe your feet in the morning.  Same principle for the radiation burns.

I continue to take ibuprofen for the discomfort, today a bit more cause I'm so sore from the fall yesterday.  I don't think I've taken a fall like that since I was a kid.  I have aches to keep my aches company.

Just as a reminder, be very gentle with your skin during and especially AFTER radiation.  I was so surprised how my skin continued to react in the days after treatment was finished.

No hot baths.  No extreme temperatures.
Wear loose fitting clothing.
Moisturize, very gently, with Miaderm and/or Aquaphor throughout the day.  I apply a generous amount each time, and a little extra at night.
Don't forget your neck, under your arm, under your breast, and your shoulder if you have been instructed to do so.  Part of my treatment did have a beam that exited out my shoulder; this is common.
Try not to scratch your skin, even when it feels really itchy.
A cool damp washcloth really helps relieve the burning.
Stay very hydrated, it's like moisturizing from the inside.
Rest.  Rest often.
Do not use any lotions, creams or perfumes on your radiated areas.
Use a very mild soap, like Dove, or none at all.  I have found a cool shower really helps relieve my skin's discomfort, and I only vigorously soap up other parts of my body, not the radiated parts.
Use your hand to wash your radiated parts, even a washcloth can be too rough.

It's so exciting to be done with treatment, but even a week later, the care for my radiated areas continues.

I didn't walk today.  I was too sore from yesterday.  I'll get back on the horsey tomorrow.  On flat ground.  Muffinless.

One other thing, I made a special trip to Whole Foods market to purchase Nutiva Coconut Oil, and Coconut Manna.  I've included a link about these.

https://store.nutiva.com/coconut-oil/

https://store.nutiva.com/coconut-manna/

I no longer use soybean oil, canola, vegetable oil, or any other highly processed oil.  I also don't use margarine or any butter substitute.

This is it for me -

Olive Oil.
Coconut Oil.
Butter.
In moderation, at the top of the pyramid.  The base of my food pyramid is now fruits and vegetables.

Eat as many one ingredient foods as you can.  I am already seeing and feeling the difference in my skin, hair, nails, and healthy glow.

Not that glow!

Glow Girl has been reassigned to the witness protection program and now lives a quiet life somewhere in the Bay area with her Husband and two sons.

Her BEAM ON days are over.

Friday, January 21, 2011

If A Lady Falls in the Forest...

video


I don't know if you could hear me on the video, but yes, Muffy and I took a big fall today, and almost rolled down a hill like a big pink snowball.  I can't even really tell you how it happened.  It was a complete surprise.

I live in a neighborhood that weaves in and out of canyons of eucalyptus, right next to a large strait of water.  I took Muffy with me today, and decided to go the back way on a trail I haven't been on, but I knew it dumped out across the street from the marina.

The eucalyptus trees are dense and tall, the trail completely shaded.  It's so quiet in there, the sound of my footsteps and her paw steps were like the crunching in a Doritos commercial.  Muffy was a little spooked.

Right before I fell, there was a creaking sound and something hitting the ground, like a large branch had fallen.  Muffy darted, I looked left, and the next thing I know, I was going down on my right side.  My foot wasn't there.

I hit hard, breaking my fall with my right hand and right hip.  For a minute, since we were on a decline and I fell with such momentum, I thought we might roll down the hill, pink sweater over pink sweater.

We didn't.

I sat there a minute, humbled like Humpty Dumpty, and Muffy jumped in my lap like Humpty Dumpty's puppy.

"Shit" I said out loud, disturbing the grace under hundred year old trees.  Muffin looked up at me as if to say "Are we resting Mama?  Can we go now?  This place is scary, and I got my sweater dirty."

I brushed myself off and got all the leaves and stickers off of Muffy's fur and sweater, and we were on our way again.  The hill leveled off and we walked into the sunshine next to a creek, and that's where I shot the video from my phone, not long after the fall.

Thank goodness Batman came to my rescue again, well not right away.  He was helping a friend, but would give me a ride up our hill when he was done.

Muffin and I had some time to kill.  We went to the marina, and relaxed under palm trees in the incredible weather we've had this week.  We watched ducks land on their butts, skidding across the surface of sparkling water.  Then we dropped in at my lab to say hello to my Lab Lady.  Hello Lady.  That was fun today, coming to visit you and not even getting poked!!  Thank you for the cool drink for both of us, and a place to rest until son number one came to take Mama home.

Body aches tonight.
Ego is bruised.

Fall seven times, stand up eight.  Japanese proverb

I'm getting pretty good at the getting up after the fall.

Practice makes perfect.

Thursday, January 20, 2011

Come With Me On My Walk Today

I have new walking shoes and I love them.  My other shoes were too heavy in feet that feel like bricks.  Walking in them was like clomping in snow shoes through wet muddy snow.

My new shoes are so light weight and have such bounce to them I feel like Tigger!

They are "Skechers Tone Ups."  Here's the link.

http://www.skechers.com/style/11751/tone-ups-fitness-ready-set/ccaq

I have discovered that a 30 minute walk is not long enough to achieve maximum stress relief, muscle warm-up and purging of a blond brain.  All of the good stuff starts to happen at 31 minutes and continues the last half of the hour.

In the beginning of my walk I am distracted, very aware that I am walking, my brain is cluttered and my body is tight.  As the walk progresses, at least 20-30 minutes in, good starts to happen.

My body relaxes.  My brain empties.  My breathing is deeper, and I feel a sense of calm.  I release what I carry.

I walked through my neighborhood, down the hill, and to the marina just below my house.  I had arranged with Batman to pick me up so I wouldn't have to trek up the hill as if I was going for the summit at Everest.

Come with me.

First you will need some breakfast.













One hour every day.  I will give this to myself.

What do you need to do for you?

Wednesday, January 19, 2011

Where's My Estrogen and Where's My Coffee?

Now that I've finished the part of my cancer treatment designed to kill that bitch, I've graduated to the next phase to prevent it from coming back.

I started Tamoxifen today, filled my prescription at my local grocery store, and will be taking one pill daily each morning, for the next three to five years.  With my prescription plan, the cost for a month is a $10 copay.

Tamoxifen has been used for over 25 years to fight tumor growth and recurrence in women diagnosed with breast cancer.  How does it work?  Some types of breast cancer (like mine) are hormone positive, meaning the cancer cells need estrogen as fuel.  Tamoxifen blocks the use of estrogen by those cells, basically shutting down the factory that allowed my cancer to grow and multiply and spread.

Amongst my Sisters, the drug is commonly referred to as "the devil pill" because of its side effects.  Yikes.

The most common are menopause-like symptoms such as hot flashes, vaginal dryness, leg cramps, and joint pain.  There are some risks associated with Tamoxifen, including blood clots, stroke, heart disease, uterine cancer and cataracts.  It is believed though that the benefits for breast cancer patients far outweigh the risks.

Chemo threw me into menopause, and not long after my last period ended several months ago, I started to feel the effects.  The changes were dramatic.  I started experiencing hot flashes, insomnia, mood swings, and lots of melancholy.

I have previously mentioned I take a supplement called Sam-e (Sammy).  I started because I heard it helped with neuropathy.  It didn't do much for mine, but the effects on my mood and uber menopausal symptoms have been impressive.  It only took about two weeks to notice a substantial difference.  Since starting Sammy several months ago, I haven't had a hot flash since, my moods are balanced, and I have not experienced the extreme PMS-like melancholy and irritability that were dogging me.

I take two 200 mg Sammy pills each day, in the morning, about 30 minutes before breakfast, as recommended.  It is safe to take a larger dose, which I am considering now that I've started Tamoxifen.

I highly recommend Sam-e; it's made by several different companies but I like Nature made products.  Here's the link for you.

http://www.sam-e.com/

I've recommended it to a couple of friends, who also had the same positive, dramatic results.  I purchase mine at Costco, but it's even available at Target and CVS.

My radiated sites are still causing discomfort, some pain, and lots of burning and itching.  I am moisturizing frequently with the Lindi cream I was given as a sample, and lots of Aquaphor.  I'm also taking some ibuprofen.  My arm pit really bothers me, as well as a small area above my nipple on Flopsy, and a small patch on my neck.  All of these areas are red, burning, itchy and tender.  Flopsy's nipple is beginning to get some color back, not quite rosy but getting there slowly.

There's just one more thing I have to confess is now part of my morning routine.  I am absolutely addicted to my new Keurig coffee maker.  You know, the brewer that uses K-cups to make one delicious cup of coffee, hot tea, or cocoa at a time.  Oh man.  I love that thing.  I have always enjoyed coffee but didn't drink much, not wanting to make a whole pot when I was the only one in the house having some.  This little machine is great, and it's fun trying all the flavors.  It's so easy and you don't have to deal with all the mess of coffee grounds and filters.  I love it!

http://www.keurig.com/10percentoff?cm_mmc=msn-_-brand-_-keyword-_-keurig&crcat=WSP-Brand~brand&crsource=msn&crkw=keurig

Sure feels great to be on the flip side of my cancer treatment.  You have no idea.  Well, unless you are part of my sorority, and in that case Sista, I am preaching to the choir.

Whichever you are,
part of the choir or not,
thanks for coming,
thanks for listening,
and thanks for continuing this journey with me.

Tomorrow is show and tell day here on the blog, all about the new walking shoes I got.

They are the bomb!!!!!!!!!!!!!!!!!!!

Tuesday, January 18, 2011

Sneaky Ass Radiation, and Stubborn Donkeygirl Rides Again

First of all, let me say, I look like a damn gnome in my end of treatment photo.  Second of all, remember that wish I made for no more thorns, just roses?

Uh duh?

Hello.

Hello girl.

Who ever heard of roses without thorns?  They just don't make em that way.  That's why they're such a good metaphor.

Third of all, hi, how you doing?  You still with me?  How bout my secret fan club?

Well, just when I was getting all cocky about finishing radiation, and how well I did, and how well my skin held out,

ouch.  ouch.  ouch.

Did you know some people don't really experience their skin crying uncle until after treatment is over?

Shazam.

My arm pit is peeling and raw, and so so tender.  My poor little Flopsy's nipple turned white as a turnip, and looked like she might shrivel up and die.  I mean no color, no color whatsoever.  You ever seen an albino nipple?  Oh geez, is that PC?

Yesterday I called to talk to the radiation nurse and tell her HELP!  She said she'd tell Dr. Lotus all my stuff and then call me back.  She did, and I was scheduled to see Dr. Lotus today.

I felt a little stupid already back in there when I only finished last Friday.

Hi.

It's me.

My armpit is on fire and my nipple needs CPR.  Can you help?

Dr. Lotus came in the exam room and reassured me this was not out of the range of normal. She was glad I called, and made sure to emphasize that I should never hesitate to call.  I have to admit, I was happy to see her.  I didn't get to see her my last day of treatment so in a weird way, I was happy I was there.

She checked everything out, and I told her about what I'd been experiencing.

Lots of burning.  Lots of redness.  Itchiness.  Tenderness.  Pain.  Peeling.  Browning up.  Oozing.  and this nipple, will you look at this nipple Doc?

After the Wizard worked so hard to save Flopsy's nipple, I got a little worried there about her.

Dr. Lotus listened, reassured, and left for a moment to get me some things to help.  One of the things I will be trying, they just received some samples, is a cooling gel, and a lotion, called Lindi cream.

http://www.lindiskin.com/

Dr. didn't think I needed a prescription at this point, and wanted me to try the Lindi samples, and give her feedback.  I heard mention of Lindi cream on the NOS message board, where all my lovely Sisters and I cyberchat about issues relating to breast cancer.  [I've come back in to this post to edit this mention.  The Network of Strength "NOS" website has returned to its original name of "Y-me."  Here is the link below.  Of all the breast cancer message boards, this one is by far the best, with a community of supporting, caring, funny, responsive women.]

http://www.y-me.org/

I told Dr. Lotus about my big walk over the weekend, and she looked at me like "Are you crazy?  What about resting and giving yourself time to heal did you not get?"  Well, she didn't say any of that, but it was all over her face.

I don't know, I just feel like, ok, I finished treatment, time to whip my ass into shape and get back to work.  I talked to her about feeling as if I needed to give my job an update on where I am, and Dr. Lotus said she'd be happy to write a letter.

She usually recommends her radiation patients take at least 6-8 weeks off work following completion of radiation treatments, and that doesn't even count the fact that I had a very lengthy course of chemo and BLM prior to radiation.

She really made me laugh when she said "Maybe, I really need to be writing the letter to you..."

I laughed so hard, and so did she.

In other words,

settle your ass down writergirl, you aren't recovering from a cold here baby, you've just finished nine grueling months of cancer treatment, your body still has some substantial side effects and you need to chill, heal and

rest.

Ok.

My bad.

Therefore, I will be RELENTLESS in my commitment to rest and heal and let things unfold, as they will.

Ouch.  Dang.  My armpit and booby hurts.

Beware that sneaky ass radiation.  Just when you think you're home free,

BAM.  You ain't all that stubborn girl.

Ok, my Body.

I'm listening.

I give.

Deep breath.

Monday, January 17, 2011

Self Portraits

Nine months of treatment.  Here we go.


Diagnosis.

first chemo





cut my own hair, starting to lose it

last night of hair




cancer Buddha


my favorite scarf

last chemo after two failed ports and failed PICC


first wig, aaaahh, I had hair again

My free wig from ACS, saucy red!

My Jennifer Anniston wig!



fuzzy wuzzy coming in

last chemo

5 months of chemo took their toll, and saved my life



just completed radiation


Five months chemo May 2010 - September 2010.
BLM and lymph node removal, October 2010.
Six weeks radiation, November 2010 - mid January 2011.

Can I go home now?

Update:  From Stage 3 to cancer free!  Almost three years out!  Wheeeeeeeeee!









Sunday, January 16, 2011

Writergirldreams? Here.

It is starting to get real for me, I am done with my cancer treatment.  Yes, I need to get the results of my CT scan, and that will decide when or if I start on Tamoxifen.  Other than that, I won't be seeing The Good Witch for a month, and I don't have a follow-up with Dr. Lotus for six weeks.

I've been cut loose.

I'm not really sure what to do with myself.

I keep thinking I'll be going to the Cancer Center this week for my usual schedule around 10 a.m., and then I have to remind myself, no, I don't need to do that anymore, and no, I won't be going.  I've chased my tail several times like this today.

I decided to take a walk, and it was the longest and most strenuous one I've taken in months.  I really pushed myself.  A couple of times I almost called Husband and said "Pick me up.  I went too far.  I don't think I can make it home."

I didn't make the call.  I kept pushing.  Although my body wanted to stop, my brain was urging me on.  Maybe you saw me, all bundled up in my pink hoody, long pink scarf wrapped around and around my neck, and my head covered in one of the cute little hats Kimberly's Mama made for me.  The pink and purple one with a small crocheted flower at my temple.

It was cold and foggy, and the moist air filled my lungs as I panted through my neighborhood, going farther and farther.  When it was time to head for home, and up the hill that had been much easier coming down, I wondered "What were you thinking Girl, what were you thinking?"  My right foot chimed in "Yeah, what were you thinking?"

Something happens though when you push through the pain.  Something happens when you are working every muscle and breathing hard.  Something happens when your body is telling you "no" but your brain is saying "oh yes you will, oh yes you will."  My spirit held out and my body gave in, and I felt such a release of tension through my neck and shoulders and upper back.  My feet and legs were aching and complaining, but I didn't listen, my upper body and brain felt so good.

I felt something I hadn't felt in a long time, other than a sweat!  Like I was taking something back.  Or maybe claiming something.  Embracing yes instead of accepting no.

I don't know how to describe it to you.

I remembered the red wristband that held the key to locker number three in the radiation waiting room, and that I had taken a picture of it resting on my lap.





That was it.  How I felt.  The word I was looking for.  What I wanted to describe to you.

RELENTLESS.

Relentless in my commitment to myself.
Relentless in my commitment to my health.
Relentless to work this body so I can return to work.

I've already learned RESILIENT.  I got my training in cancer boot camp, and proved myself amazingly resilient.

Now I'm ready to get tough and do what's next.

Relentless.

This is how you live.  and love.  and breath.  and move your body.  and fight like a girl.

Relentless.

Saturday, January 15, 2011

Leap

We must walk consciously only part way toward our goal, and then leap in the dark to our success.  Henry David Thoreau

It was strange going to radiation, knowing it was my last one.  I felt so many things, relief, joy, apprehension, and knowing I would miss the familiar faces who took care of me.

The lotus flower blooms most beautifully from the deepest and thickest mud.  Buddhist proverb

Thank you Dr. Lotus, for all the things you did to take such good care of me, for all the time you spent answering my questions, explaining the math and science to me, and mostly for being open and proactive to the concerns of a patient who was feeling fragile and tired towards the end of treatment.  You were the lotus flower for me in that deep and thick mud of radiation and finishing treatment.  Thank you for all the times after answering my questions, you often said again "Is there anything else you'd like to ask or talk about, or would like me to explain to you?"

Thank you.

and of course, all the ladies of the radiation team, especially "R and R."  I will miss your faces, your humor, and your music selection in the radiation room.  Especially Kool and the Gang, singing Celebrate, right after I received my last boost.  One of the "R's" revealed she is pregnant.

"How wonderful" I exclaimed.  "How will they monitor baby in here?"

In addition to the monitor she wears on her badge to detect her exposure to radiation, she lifted her shirt to show me a small one clipped to her waistband, on a tummy that was just beginning to show.

I will miss you "R and R," your sweetness and your rhythm together.  I will miss you both.

I was presented with some parting gifts, a small quilt with pink ribbon patches made for all patients finishing treatment, and of all things, a diploma, with the following declaration:

Having completed the prescribed course of Radiation Therapy, with a high order of proficiency in the Art of being Determined, Cheerful, Tolerant in all orders given, and Outstanding in High Courage.  It is recognized by our staff as an Honorable Achievement, and we would like to congratulate you on a job well done.

It was signed by all of the radiation staff and Dr Lotus too.

Oh and the day before, I received my first Girl Scout Badge in some 45 years, from the Oncology Nurse Navigator.  It's a rainbow, and what they call a bridging award, celebrating a girl's transition from one leadership level to the next.  In my case, she said, to mark the transition I am making from cancer patient to survivor.

The morning there flew by, and when I finished, I had to stop to see Vonda and Kitty, since they were such a huge part of my treatment, and it would not have seemed complete without hugging them both.  Mission accomplished.  I wish that was the end of my day, but the CT scan was still to be done.

Just after leaving the Cancer Center, Husband texted he was taking the afternoon off to accompany me to the hospital.  I was relieved to know he'd be there waiting for me after finishing the scan.  I knew it wasn't going to be easy.

I had a couple hours to kill, so I went home, had a small lunch and tried to relax.  Dr. Lotus called to followup on the scheduling of the scan, since I had not seen her that morning at radiation.  I told her yes, it had been scheduled for that afternoon, and I really appreciated her checking in to make sure.  She also said I could check in with her early next week to see if the results were in, since The Good Witch is not in that office until Friday of each week.

It wasn't long before Husband arrived home just in time for us to leave.  He drove to the hospital, and when my name was called at the Admissions Desk, the same cheerful clerk who helped me on several other occasions was there again.

"Well, you look just wonderful, look at all your hair!" she said excitedly.  "I have seen every variation of you, from your original Goldilocks hair, to you in a scarf with no hair, to you in a wig, and now look at you with your spiky, cute hair!  You have worn each one well" she said kindly.

It was nice to hear, and took my mind off what was coming my way.

I checked into the imaging department and asked "Is Wayne here today?"

"Yes, yes he is."

I was relieved.  It wasn't long before I was called in, by a very nice fellow, but not Wayne.  He asked me to change into a gown, and take my necklaces off.  I had seen this guy before, very nice, but I was hoping for Wayne who had helped me through several prior procedures and always seemed to find a vein when others couldn't.

"Will Wayne be starting my IV today?" I asked.

"Well, he's busy with another patient right now and I don't know for how long, so let's give it a try and we'll see what we have here."

He was very sweet, distracting me with chit chat as he searched for a vein.

"Do you have any dogs?"

Not seeing anything that looked promising in my upper arm, he started searching my hand.  I felt myself break into a sweat.

Please, please dear veins, please cooperate today, pulleeaaze.  I pleaded with my body.

"Ok here we go, get ready for the stick."

Gosh damn.  That gosh damn stick.  Get ready for the stick.  I hate the stick.  I effing hate the stick.  I took a deep breath, and felt my face get hot and my eyes water up as the large needle went into my hand.  When they start moving it around inside the vein, it hurts like hell, it burns like hell, and I know it's a sure sign there is no blood to be found.

I cursed like a sailor inside my head, in between thoughts of "I can't do this anymore.  I just can't do this anymore.  I can't."

He pulled the needle out.

"Did I hurt you?  I'm sorry."

A tear slid down the side of my face and into my ear.

"It's ok" I said softly while thinking "Yes, you effing hurt me, where the hell is Wayne and don't you know this is my very last day and I am tired of this shit and I can't do this anymore.  I want Wayne...  Wah."

"I'm going to go see how Wayne is doing, and we'll just wait for him, ok?  Don't move, ok?"

I guess my thoughts were telegraphed by my face like a frying pan to his.  He was gone for several minutes, and as I lay there, it was as if all the months of treatment flashed through my brain.  All the shit that hurt, the feeling sick, the fatigue, the chemo, the ports, the PICC, the surgery, what have you done to Flopsy and Mopsy, the swelling, the sticks, the pokes, the veins that could not be found or would not relinquish their property.

I swear to God, and I mean you God, I don't know how I did it and why did I have to in the first place.  I really don't know how I did it.  Please oh please oh please Lord, and I thought of Paul, in the Bible, when he asks God three times, please remove this thorn  from me, and God answers My grace is sufficient for you, for power is perfected in weakness. (2 Corinthians, 12:7)

Grace.  Power is perfected in weakness.  I lay on that table, looking up at the ceiling tiles, so fragile, so broken, and yet,

so broken open.

Broken open and unbreakable.

The door opened and there was an Angel.

"Well, hello there Lady..."

It was Wayne, to my rescue.

"Hi" I said softly, relieved.

"Well now, let's take a look here" and he felt around my arm.  "Hold on, I'm not taking any chances" and he went to another part of the room and wheeled over a mini ultrasound machine.  "Let's get some gel on you and KNOW where a vein is before I start poking around on you Lady."

I exhaled as if I hadn't in months.

"H-m-m-m, let's see here, nope, nope, wait a minute, I think we've got one, let's see, yes, that looks good.  The problem with you Lady is your veins are so tiny, and so deep!  But we are in business now."

He cleaned the gel off me, rubbed in some alcohol, and said "You ready?"

I nodded.

I felt the hard stick and the burn, and him taping off the IV.  "Ok, you're all set, take care of yourself" and out the door he flew before I could even thank him.

I could tell 2nd string guy felt bad, I looked away.

"Ok, get ready for the feeling of..."

Before he could finish the sentence, I felt it, a very warm fluid flushing and quickly traveling through my body, up my arm, across my chest, swirling around my stomach, and then filling my bladder like a toxic hot chocolate.  It was wicked.

"Ok, we're ready, now this will only take a minute" and he was right.  A couple of deep breaths, hold the breath, in and out of the giant white donut, and I was done.

"You take anything before you came here?"

"Um, my vitamins."

"What time?"

"I guess around 11:30 ish."

"What you take?"

"Um, a vitamin D, krill oil, um, why, will it make a difference?"

"That's ok, no."

Huh?

As he removed the IV from my arm, he spoke.  "How long have you been in treatment?"

"Nine months, I just finished today."

"I noticed your Relay for Life bracelet.  Did you go to one?"

"Yes I did, this last summer."

"Which one?"

"The one for Vallejo-Benicia."

"My son was there too, he said a few words, he had leukemia.  That is a three and a half year treatment."

Three and a half years?  Whoa.

"I'm sorry to hear that, how is he doing?"

"He's doing great."

I nodded.

He suggested I pee as soon as I changed back into my clothes, and I should drink lots of fluids the rest of the day to clear the iodine based contrast out of my system.  He helped me up from the table, and showed me back to the dressing room.

"Take care of yourself."

I nodded again.

I took the gown off and looked at myself in the mirror and spoke in my head.

No more thorns God.

Just roses.

Lots of roses.

Roses.

Friday, January 14, 2011

Glow Girl. Live Long and Prosper.

I walked into this room for the last time today.
This is the door that keeps inside what was aimed at me.





33 treatments of this.
Say hello to my little friend.

When this sign flashed,my super powers were received.


Glow Girl.

Thursday, January 13, 2011

This Is What It Looks Like

Poison, cut and burn.  Chemo.  Surgery.  Radiation.

Here's what the burn portion of the program looks like.  I wanted to post a photo of Flopsy with the effects of radiation, but Husband wouldn't have it.  So, you'll have to settle for a photo of my lovely armpit and raised arm.  Bet you never thought you'd see that.







My skin is tender, weepy and swollen.  In the top photo you can see my scar from where my lymph nodes were removed.

The same type of reaction is on Flopsy; the swelling and variations of red and purple and browned skin.  All the radiated areas of my skin feel much warmer than non-radiated skin.

My skin never peeled or became an open sore.  This is considered very good.  I credit the frequent use of Miaderm cream and Aquaphor, right after treatment and throughout the day, and staying very hydrated.

One more treatment to go, and then I've graduated from poison, cut and burn.  Couldn't happen soon enough, I'm ready to make like Sleeping Beauty and sleep one hundred years.

Just so I could go out with a bang, my CT scan has been scheduled for tomorrow afternoon.

Oh goody.

So there you have it.

This is what it looks like.  The burn portion of the program.

Check.

Wednesday, January 12, 2011

31 Treatments Done, 2 To Go

I pick a locker.  Usually number three.  Middle row, farthest left.



I open it.  A neatly folded gown waits for me.




I change inside the dressing room, taking everything off the top. I tie up the gown, so it can open in the front.  I grab a blanket from the warmer; they smell of warm baby formula to me.




I take my place in the radiation patient room, and wait for them to call me for a  little "R and R."  I take my blanket with me when it's time to go.




They take me in to the vault, past the heavy door.  I lay on a hard table covered with a white sheet, and they give me a cushion for under my knees and feet, and spread my blanket over me.  They tuck my feet into another warm blanket and try to get me as comfortable as possible.  I open my gown and they flatten Flopsy into position, taping her down, then taping me down to the table.




I focus on the light box above me.

I pray for blue skies ahead.

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