A year in my life, from the day I was diagnosed and for the full year after. Walk with me.

Thursday, March 31, 2011

Day Eight The Boneyard

I love my gym.  I belong to a Crossfit gym down town, on the wrong side of the railroad tracks next to the steel fabrication plant and a recycling plant  The pavement is heaved and cracked, potholes are the rule and a steady parade of dumptrucks and semis pass our open garage door.  When it rains, which is often, the rain drips through the corregated tin warehouse roof and washes off the chalky hashmarks that track our AMRAPs.  5:00am finds it full of sweaty, straining, stinking bodies united in support of their own and everyone else's personal best and dying for their first cup of coffee. 

I have belonged to Crossfit gyms before, but each one is different and I love this one.  It's been dubbed The Boneyard and I am comfortable there.  As comfortable as you can be doing Air Squats, Box Jumps, and finding your Max Dead Lift...It is the place that I have chosen to rehab myself after a cascade of injuries this last year.  I am gettiing stronger and shedding pounds slowly, but more importantly I am regaining my chutzpah. 

So far they have managed to keep me from injuring myself, not an easy task as I am a pusher.  I allow them to choose my weights for me, as I would reach just a little farther than is prudent during this slow comeback.  How hard I work within their parameters is entirely my own decision, and I wring every bit of effort from myself.  Why would I do less than everyone else there?  It would be embarrassing. 

Women are the minority, but they are not looked down upon or subjected to condescencion, it simply would not be allowed as one of the owners is a woman and she would kick their ass.  Everyone knows everyone else, newbies are welcomed by the whole.  Help is ever present, encouragement is abundant.  Nirvana.  Leave your ego at the door and push yourself 'till you drop.

I told the female partner Jennie about my diagnosis and how I am determined to make Crossfit a partner in my recovery.  We teared up, discreetly, 'cause we don't want the guys to think we are crybabies.  I think we both realized that I was making an important decision to be, not just a survivor, but a conquerer.  The day I return from my surgery I might just plink an exercise band while everyone else plays Wall Ball, but it will be an important day on the road to recovery.  Chemo will be another thing entirely, but I will still come even if it's just to row and stretch.

The next day I received an email asking me if I would mind that the Boneyard will be walking in the local Joy to Life breast cancer walk in my honor.  I was more than surprised, unexpectedly I felt PROUD.  Very soon after I started receiving emails offering support and prayers.  I really feel their support behind me, solidly.  I know they won't accept less than everything I've got and they'll be there to add a little of their own strength to help me pull through.  There will be no retreat and no surrender.  It would be embarrassing.

Wednesday, March 30, 2011

Day Seven Regaining Control

It felt great to go back to the gym today.  There is something so centering about pain and concentrated effort.  My head is not in the game yet and my hip is still gimpy but I completed the workout.  Hell, I'm just proud of myself for being there, you see Insomnia has been my lover for the past week.  We wrestle each other all night, he can't get enough of me.  He is not a generous lover, taking what he wants and leaving me exhausted.  Bastard.  Getting out of bed at 5:00a.m. is really very hard.  I have to go though.  This is a necessity in my New Normal.

Today I had my MRI to see if my infiltrating cancer has spread past the locations that we initially found.  Thankfully it has not.  My lymph nodes are clear.  Maybe I will sleep tonight.

We have time to think.  Not a lot of time, but some.  Maybe enough to make the right decisions.  I have been feeling out of control lately.  My husband's uncle, a gynecologist in South Carolina, has told us to take a breath and get an education.  I am taking his advice to heart.  It does not suit me at all to feel out of control in this situation.  I am in the saddle after a bad jump, my boots have fallen from the stirrups and my reins have slipped from my hands.  The next jump is just ahead and the horse is still running.  I have to sit deep in the saddle, center myself, regain contact with my horse by calmly gathering my reins.  That is all I can do before this next jump, after that maybe I can search for my stirrups. 

Prioritize, be systematic, know my options, hang on baby cause this next jump is going to be a doozy.

My husband's other uncle has made arrangements for us to consult the best breast cancer physician in the country.  We will call tomorrow and make plans to fly to Houston.

Our cousin in Birmingham does Diep Flap reconstruction.  We will speak to him about doing the surgery up there.

We will speak to a local breast surgeon here and see what he has to say.

I will shore up my ever expanding support group.  I wish I had the energy to write about it today, but I can't do it justice.  Definitely tomorrow.

Things are coming together, not coming apart.

Tuesday, March 29, 2011

Day Six What I Do When I Am Doing Nothing

I haven't cleaned the house in a week.  It smells like 4 dogs, two teenagers, a weeks worth of laundry and a husband.  I feel like a slacker just sitting around and letting this happen.  My Husband says he and the kids will take care of it, and I believe with all of my heart that they have tried.  And failed.  So I file my rusty brain to a dull nib and get at it.

This is how I do housework.  First I clutter bust the house, gathering everything that is out of place and either dumping it in piles in the kids rooms or putting it away. I get all of my cleaning stuff together and attack a room, top to bottom, clockwise, trash goes out and vacuuming and mopping end the job.  After that it's on to the next room. It's a system.  A child could do it, and by that I mean another person's child.  Mine haven't seen this knowledge for the goldmine that it is.

Today I can't get with my system, I am like a marble in a boxcar, rattling around.  Doing a little here and a little there.  Making lists in my head, but none of them have to do with housework.  My list goes like this:

Buy a recliner.  How am I going to be expected to lay flat after a double mastectomy with a reconstruction?
Install a dog door.  4 dogs, 'nuff said.
Find a cleaning woman to help during my recovery.  See above.
Buy men's drawstring pajama bottoms and button front men's shirts.  Only men's have pockets, I don't know why.  I also need camisole with built in bras.  I read that they are helpful in holding the drains.
Find an adoptive home for Martin.  He hates being with other dogs and I won't be able to referee when he stages a throw down.  I also won't be able to clean up after him when he leaves a steaming, vengeful pile in the corner.
Teach my husband to pay the bills.
Put together an organizational system for my medical related paperwork, medication logs, etc.  Maybe a large binder.
Teach Rachel to drive.  She might be able to get her license in April and that would help alot.
Look at breasts.  Pick out a pair.
Purchase a bunch of pillows.  I hear the buckwheat hull type are good for propping your arms.
Make sure we are stocked with supplies for bandaging.
Learn about drains and post operative care.
Designate a photographer
Make an appointment at MD Anderson
Clean the house...

Monday, March 28, 2011

Day Five Stage Three

Anger is a most unsafe emotion.  My mother was an angry, dangerous, vengeful, sometimes violent, depressive, unpredictable woman.  Anger made me freeze when I was little, it's better now that I am older and have developed healthier ways of dealing with strong emotions.  I haven't seen or heard from my family in 15 years, that has encouraged my recovery, necessary because mommy dearest endowed me with all of her menacing skills.  My sainted husband has helped me a lot by being a wonderful example and an even better anger catalyst.  I have practiced my explosions of unhealthy anger on him for years and have finally learned how not to fight dirty, how to listen, how to create something good out of strife and disagreement.  It's been a long road.  I like it much better this way.  He had helped create a better person out of me, bless his battle tested soul.

Today my mother came back to visit in the form of wild, out of control anger.   My inner child is hiding under the bed.

You can talk about anger as a step in the process of grieving, but you cannot understand it until you experience it.  This is not miffed, vexed, cranky or irate; this is violent and dangerous fury.  It is unreasonable and it is mixed in with despair.  It's an emotional parfait. A layer of gall, a layer of hopelessness, a layer of fear, another layer of gall and so on.

I keep cramming it down so it doesn't effect my family.  That can't be healthy, but it seems preferable to being the hissy fit hussy that everyone wants to avoid.

Tomorrow my in laws come home from their trip to New York City.  I had better get myself under control by then because, after we tell them, all hell is going to break loose.  My MRI is scheduled for Wednesday afternoon.  The wheels are rolling faster and faster.  Strength and peace are called for here and they are in very short supply.

Sunday, March 27, 2011

Day Four Watching the Hummingbirds

It's hummingbird season here.  I don't know much about them, it's enough for me to watch their irridescent, ruby throated flitting.  In order to attract hummingbirds you have to set out nectar sometimes for two or three seasons.  Word has to spreadthrough the hummingbird media I guess.  After that you shouldn't let them down, you need to commit to setting out the hummingbird buffet each year.  It's an honor really, they are extraordinary creatures.  I no longer set out the nectar and haven't for many years, but the kids and I used to.  We would watch them together from the kitchen window,fascinated.  I miss that.

The kids grew up and I got busier making their time my occupation.  I'm glad I did it, very few women do that anymore, full time mothering.  I don't judge, the choice to stay at home or not to stay at home is difficult and takes great personal sacrifice either way.  Managing my daughter's autism was a full time job that noone could do but me.  She's much better now.  My son too, has become an independent person with his own life. I no longer need to spend my entire day with my kids.  Now I work outside the home.  I no longer drive them everywhere they go and listen to their conversations and arguments.  I miss that.

My husband and I told our children about my diagnosis, giving them the facts and telling them that we would need their support through this treatment period.  Surprisingly they didn't say much of anything.  The tears I had been prepared for didn't come, there were no questions.   I don't know if they are brave or unconcerned, honestly.  Clearly they think I am the kind of woman who is difficult to kill.

Then something extraordinary happened.  My elusive Aspie daughter started coming out of her room, without being asked, to sit with me on the couch.  Close enough so our hips almost touch.  When I reach out to touch her hair she doesn't flinch, she just turns and looks at me, right in my eyes. My son sits across the room, glancing up occasionally and smiling.  He is the first person to get up when I seem to need something.  For the past two days they have hovered there.  Irridescent.  I watch, fascinated.   It's an honor really.

Saturday, March 26, 2011

Day Three, 40 Kids and a Horse

I spent the whole day with my son.  He is, without a doubt the greatest companion anyone could ask for.  Anyone who knows him will tell you so, spending time with him is a pure joy.  First off he is very funny, but not in an overt way, this is more of a dry observant wit.  He has moments of pithiness coated in moments of just pure acceptance.  If every you want to know what it is like to be accepted unconditionally you want to hang out with my son.  People line up to spend the day with this wonderful boy and today I was the lucky one.

We woke up at 6:30 on a Saturday morning to manage a workday at the barn.  My son brought his favorite toy (outside of the riding mower), his power washer.  It was his job to clean the barn aisle and wash racks while I managed 40 Junior High kids from a large local church.  He did not complain once and worked like a Trojan.  So did this group of kids and their accompanying parents and ministers.  At the end of the morning the barn looked like a shiny new penny.

Standing in the flow of all of that energy is exhausting.  It's loud, chaotic, crazy, silly and life affirming.  My pink watch ticked on my wrist and I stood in the middle of the churn, maybe the first time without any expectation or agenda.  I did not think of the next 5 things on the "to do" list.  I just stood.  In the barn, with my son, listening to life and I was happy.  Not tiny happy, big happy. You shouldn't need cancer to have moments like this.

After the flood of giggling hormones re boarded their bus I looked for my boy.  He was soaking wet and grumpy; a warning sign.  Only grumpy when hungry, this is my last warning before a total attitudinal meltdown, he is just like his dad that way.  Though lunch at McDonald's is not a treat for me, but it is a treat for my son and, after this morning, he deserves his Southern Style Chicken Sandwich Combo with an Orange Drink.  I think he ate it in one minute.  There were no crumbs, I was amazed he had a wrapper left.  When I reached down for my small soda it too was gone.  Teenage boys are not to be trusted around food. 

Last thing we needed to do was quickly deliver my mare to my trainer.  After a fall I had last month, my husband and I decided to send my green horse to a trainer for more work under the saddle.  He's right, it's cheaper than a broken hip.  I am happy that I made these arrangements before my diagnosis.  If I hadn't her training would have been left for later, maybe after my recovery.  As it is, she will be ready to help me through my recovery.  I will ride through all of it, on my horse who I love, trained by my dear friend who I love.

A beautiful appaloosa mare, bright colored Bay with a frost blanket.  She is a delight, but always an appaloosa.  Appy owners will know what I am talking about here.  They are the image of smart and stubborn.  Whey they learn a new behavior it requires time, not because they don't understand (they do), but but because they have to agree.  My horse doesn't agree that trailering is something that she should do.  I have been feeding her in the trailer for a couple of days so that loading day would go according to plan.  When the time comes to load I put her food in the trailer, walked her up and she acts like she had never done this before.  No way Jose.

My son and I spent two hours trying everything we knew to get that horse in the trailer and nothing worked.  We had to call my friend and trainer to come and help.  Eventually, between the three of us we got her loaded, transported, and unloaded.  Her mind was blown.  What an upsetting thing it is to find yourself transported from your familiar existence, to a place that is unfamiliar.  Where you don't know what is going to happen next and who you are going to have to deal with.  You don't know if you are going to survive, life is turned upside down and you are petrified with fear. 

Be brave my little horse.  We will be courageous together.

Friday, March 25, 2011

Diagnosis and a Pink Watch

I love a Doctor who sits on the sofa next to your chairs.  It is such a formidable distance to span when they sit behind their desks.  That barrier must protect them from the psychic overflow splashing out of their Visitor chairs.  It's an act of bravery and compassion to choose the exposure of the sofa.  It says "I am with you to help you wade through your shock and misery."  "I am not afraid to show you how I really feel in the face of what you are feeling right now."  "Don't be afraid, I am here."

Dr. C was professional, knowledgeable and human.  She treated us with dignity and like partners, answering our questions without any condescension.  Stage 2 invasive lobular carcinoma.  Prognosis "good."  I really wanted to hear "excellent."

I had a list of questions to ask about the tumors, turns out they will have to be addressed to my oncologist after my MRI.  Hopefully it hasn't spread, and I don't think it has.  We took images of my lymph nodes and they looked completely clear.  The tumors are small, she is still amazed that I could feel them.

Looks like a double of mastectomy with a tram flap.  Is it wrong that I am excited about a tummy tuck and big girl titties?  I am going to be HOT. 

And I am going to live.

When I first held my children after I gave birth I was disappointed that I didn't feel the instant overwhelming love that I had imagined.  That came later and was indeed overwhelming.  I just needed time.  So I guess I shouldn't be shocked that I didn't get that "survivor" feeling right away either.  I felt so weak and vulnerable.  My husband was my rock and my island of solitude and I felt so needy.  Not like a Survivor at all.  The vortex of cancer was sucking my in and I couldn't even dog paddle.  That is changing now.  I feel my old self ebbing back, the shock of the first punch is wearing off and I am ready to finish this bar fight.  Damn it, I am 48 years young, I have two teenage kids, I ride horses, I lift weights, I love living.  Fuck you cancer, you are going down.

At least I think you are.

On the way home my husband and I stopped for ice cream.  I am a "one scoop in a cup" kind of girl, but today I ordered two scoops on a waffle cone.  I need my tummy for my new boobs.  After we stopped at a friends jewelry store and my husband bought me a $300.00 Reactor watch with a pink mother of pearl face.  The most expensive watch I have ever owned was a Seiko, bought on sale, but he knew I needed a bullet proof, Wonder woman bracelet.  For this, super hero powers are called for.

I love it, and intend to wear it every day.

Tonight we will tell the kids.  I will fill them with hope and optimism, but first I need a martini.

Thursday, March 24, 2011

Day One

I will always remember the moment my fingers hit the speed bump in my left breast.  I was showering and just trying to recover from the same respiratory infection everyone else in this town has.  You know the one that starts in the back of your throat like a warning shot.  Moving immediately and deliberately into your head before rolling like a tsunami of mucous into your chest.  I couldn't speak or breathe and the steam from the hot water was so wonderful.

My day was spent marching endlessly in the therapeutic riding facility where I work.  I love what I do and rarely look at the clock, this day was an exception.  On top of the freezing temperatures, fatigue, coughing and headache one of the horses, Dallas had punched me in the chest, hard.  A pony sized bay gelding with a cantankerous attitude, he is famous for eating his handlers and walking out of the mount.  You have to stand in front of him like a door and be brave enough not to flinch, only then will he leave you alone.  This test of fortitude and dominance is often a learned skill, and I had a new tasty volunteer leading,  She was dancing to get away from him and he was having a ball making her jerk like a puppet.  I took his head to show her the technique and he made a fool out of me by driving his head into my chest.  There's alot of muscle in a horses neck and, if he had wanted to, I would have been sitting on the ground.  As it was I was just bruised and cross.

I was pressing into my sore sternum.  The shower's heat soothing my sore tissues, my fingers moved up and through my right breast, making circles when I found an abused intercostal space, combing through the inflamed tissue and bringing relief...blessed relief.  I moved automatically to the left breast and relief turned to shock.

Thickening.  A plane of it with a nodule in the middle.  It hurt.  It was not a lymph node.  I was a massage therapist for over 10 years, and I knew what I was feeling was not anything I had felt before.  I could not pull my fingers off.  I was frozen.  Over a period of several minutes the voice of denial got louder and finally screamed: "It's a bruise you silly heifer!  You were punched in the chest by a horse, what did you think you would find?" 

Absolutely, I knew that voice for what it was, but I waited hopefully for that "bruise" to disappear.  A month later it was still there.  I made an appointment for a mammogram.  I had to wait two months.  For two months my hand kept it's vigil on my left breast.  I was a walking Pledge of Allegiance. Indivisible.  Under G.d.

Yesterday I had my mammogram, followed by an ultrasound.   We saw two growths, close together with fingers.  Each less than a cm.  The Doctor couldn't believe I had felt them.  She says, with almost perfect certainty, we are looking at a malignancy.  I wasn't surprised.  I wasn't anything. I made my appointment (the next day per my physician) for 8:00 am the next morning.  Today.

My husband came with me.  He waited in the lobby with my purse while I disrobed and laid on the table.  I didn't know what to expect, so for any readers who are curious here's how it goes:  The technician/nurse exposes your breast and cleans it several times after laying a sterile field.  She locates the lesion(s) using ultrasound and calls in the Doctor.  The physician asks me to close my eyes at this point.  She says that if any of the anesthetic splashes into your eyes it will burn, "better to be safe" she says.  I think it's so you can't see the giant needles she is going to pull out and go into a mindless panic.  I've seen the needles before.  I close my eyes.  She injects the breast with an anesthetic to numb it.  The needle is moved progressively deeper into the breast tissue but just a little at a time and the spreading numbness makes it only a little uncomfortable...not bad. 

The Physician makes a small incision and inserts a large hollow (obviously) needle up to and into the body of the lesion.  I felt nothing at all.  Samples are taken by inserting a grabber thingy and pulling a trigger.  There is an audible pop and a burst of pain.  She took 8 samples.  I don't know if that's a lot, I didn't ask.  I laid on the table and breathed deeply and spoke to the Doctor about Yoga.  A passion for both of us.  It helped.  Still, by the end of the procedure I was done and trembling.  Partly from shock and partly from the autonomic effect of the anesthetic. 

I don't want to do it again, but if I had to I know it wouldn't kill me.  Right now I am on ice...happily.

Lane helped me out to the car.  I was followed by knowing, sympathetic glances as I walked through the lobby of the Cancer Center and out the door...but not for long.  I have resolved to learn everyone's name.  Lori was my xray tech today.  Her son is having trouble at school.  He's super smart and super bored.  My daughter is the same way.  I resolved to find her a math tutor in her area.

Tomorrow afternoon we go back for the findings.  I have to write down my questions, I won't remember them all.  Lane will be there to hear the answers and remember.  He said the sweetest thing today.  I said "This is not going to be a walk in the park."  He answered "No, it's going to be a hike, but I'll be here to carry your pack."