Sunday, October 28, 2012

Growing Up With a Pathologist For a Father

Dr. Bob and baby Clara

Growing up with a pathologist for a father…

(Ironically enough, he specializes in OB/GYN and Breast Pathology.)

This week I had one of those conversations that makes me realize my perspective on things is slightly warped due to the fact that I was raised by a pathologist and a nurse.

This weekend was my first time being “in charge” of the finish line at a race for the running club, so I had to get my car loaded up with all of the equipment, this involved a trip to the storage facility.  Since I had never been before and did not know everything I was supposed to get, one of the finish line veterans met

That moment when you realize
you are warped and twisted...
me there and helped me get what I needed.  He showed me how to punch the code in when you enter to get the gate to open and how to open and lock everything up. 

When we exited the facility I was surprised that I had to enter the code in to get the gate to open.  I asked why and he said he didn’t know.  My immediate reply was: “well I guess they need to have a time stamp for the cops, you know, to see if you had enough time to dump a dead body in here and get back out.”


Of course if you were dumping a body you would probably know that entering your code in a place that most likely has security cameras all over the place is not going to let you have an alibi of being across the state…but I obviously had not thought the whole plot through.  The statement did remind me that my train of thought may vary slightly from the average person.

My friends listening to my parents
talk while trying to eat...
I have two older brothers and two older sisters and we were all born between 1965-1971 (my mom’s uterus totally hates her).  My parents met at Bethesda Naval Hospital where they were both active duty naval officers, dad as a doctor, mom as a nurse.  They are super conservative for the most part and place a high value on character and presentation.  Growing up we were always dressed perfectly, pressed perfectly, and had damn well better behave perfectly.

When I try to show the wife something cool
What dad would talk with mom about over dinner, beef stroganoff anyone? Sausage?
As adults none of us has much of a filter about what we say and our parents seem to think this is odd.  We always remind them of typical table conversations growing up.  Dad spent the day cutting up dead bodies and came home and talked about his work over dinner.  Tales of removing the tongue properly during an autopsy, or a new skull saw were not unusual table fodder.  Often times a detailed analysis of smell and texture when someone has died in a fire would be the topic of conversation over a nice steak dinner or perhaps the stomach contents of a person who died of a rare form of intestinal cancer over spaghetti would be the main event, either way, for us, this was actually normal.  Sometimes there would be explosions on aircraft carriers or plane crashes and we got in depth lessons on how to identify dead bodies when there are mass casualties, first you separate body parts by sex…toe nail polish=female foot, hairy hand=male (hopefully).  Needless to say my friends HATED eating at our house when dad a busy day.

Breast Cancer Cells
Pretty...but really bizarre
to have on the wall.
Even some of the tchotchkes we had around our house were somewhat odd.  My dad had a collection of kidney stones and gallstones suspended in acrylic resin…curious.  Some of the artwork in our house was simply photographs of ink stained cancer cells, they are actually pretty…but it’s hard to explain what they are to your friends when you're 7 or 8.

One of my first memories from childhood happened when I was about 2 ½, my mother had a doctor’s appointment at Bethesda Naval where dad was working at the time and he was tasked with watching me for the 30 minutes she was at her appointment.

When my mother returned from her appointment no one knew where I was.  They finally found me in a storage closet, I had opened many plastic containers and was playing with their contents…livers, hearts and kidneys, oh my!  The only reason I even remember the incident is because of my mother’s reaction.  Suffice it to say she did not take kindly to finding her perfectly dressed child playing with the internal organs of dead people.


Oh well, as an adult I get to give dad props for helping with JFK’s autopsy (the bullets are ultimately what killed him is what I have learned), but I also was given a detailed analysis of the trajectory of each bullet and how it travelled through his brain…so if I seem warped, it’s only because I am!

What did your parents do?

Did it warp your personality, or just make you a tad quirky?

Retraining blows....

Retraining blows…

This is my running goal...
I think we have established that my body has been torn up in more ways than most people can fathom but this fall it took another couple of blows.  Since I had Clara and I was completely ‘gutted’ my body created a lot of adhesions throughout my abdomen.  At first it was just a nuisance, I had to follow a careful diet, take a few prescriptions to keep things moving and that worked…for a time anyway.  Over the past two years I wound up spending more than 30 nights in the hospital with small bowel obstructions (SBO) due the adhesions.

This spring I had my best running season ever, in fact I think it was a season of personal bests that I will never beat.  I trained incredibly hard, was in super mental and physical health, and honestly felt ready to do my best at every race.  In fact, when I qualified for Boston I had spent Sunday-Thursday in the hospital with a SBO came home, did a few miles on Friday and Saturday and qualified on Sunday.  In fact my entire running season pretty much followed that same schedule.

I finally could not take it anymore (and neither could my family).  It was hard going to bed at night and not knowing if I would have to make a mad dash for the ER at 2:00 a.m. usually driving myself (not being pregnant and always having a “hospital bag” ready is not normal).  In fact one day I had actually parked my car in Leonardtown to head out for a ten mile run got out went about two miles, got back in the car, headed to the ER and spent 6 nights in the hospital.  This was not how I wanted to live (plus, SBO’s are really really painful).

I went to surgeon after surgeon and I finally found someone I felt comfortable with who could do the procedure laparoscopically at Johns Hopkins.  On August 3rd, 2012 he cured my belly woes and for the first time in over four years I was not nauseous, no more sucking on Zofran every few hours just to hold my cookies.  Perfect.  Unfortunately he found one of my ovaries to be large and ‘unfavorable’ looking.  I had to have it followed up on.

So, I went to Washington Hospital Center’s (WHC) Surgical Oncologist and was told I was too complicated…um, wha…oh shit!

Off to GBMC where WHC referred me…on September 17th, I got the ‘unfavorable’ ovary removed (also laparoscopically) and the recovery has been hideous (I think I am one surgery away from officially being able to use the mens room, shorter lines...SCORE).  I got a massive lung infection of some sort from the intubation and have been struggling to breathe.  So getting back into running has been a trip (and yes, I am still running, I think we have established that I will run through anything).

Me trying to breathe while running...pretty!
Between the two surgeries I had a couple of 45-55 mile weeks and actually did not feel too horrible. After the second surgery running has been a beast.  Yesterday after timing the Costume Caper 5K in Colton’s Point I decided to go for a ten mile run.  It was the first day that I was averaging a marathon pace for most of my run, unfortunately it was only a ten mile run.  As I retrain I am finding that I feel big and clunky when I am trying to gain speed…probably the not breathing thing getting in the way. 

I know I can get back, it’s the time that is killing me.

My friends kept telling me that my body would be so happy with the break from running and I would come back kicking some serious ass.  WRONG. 

What I feel like when
 running since my surgery!
Luckily I have a few running partners who are not afraid to push me a little and who also let me rest and walk when I need a break.  This is the first time that I am doing more partner running rather than solo running and it actually feels amazing.  I still enjoy the solitude and quiet I find when I am out on a long run, but even more I have loved feeling the sense of community and support from other runners. 

Are you a runner?

Which do you prefer, the solo or partner run?

Have you had to retrain?  Any advice, tips?

Tuesday, October 23, 2012

Clara is born and mommy is alive!

First introduction...LOVE!
Every mother has a birth story, sometimes it is the magical two hours of labor and two pushes, others offer a bit more work and turmoil, some are downright painful and others, well others are the kind that horror movie writers steal scream sound bites from (and possibly have actresses look at footage of the mother screaming just to get appropriate facial expressions).

No, I am not going to take you through a blow by blow of my labor and delivery.  I just want to document that I survived my last C-section.

Clara was due on October 26th, 2007 but when I went to get my weekly ultrasound at 36 weeks they discovered that she had a triple nuchal cord (meaning the cord had wrapped itself around her neck two complete times).  My doctor was AWESOME, (from here on she will be referred to as Dr. Awesome) since I had a history of stillbirth due to nuchal cord accidents (cord wrapped around baby’s neck) she decided to admit me for continuous fetal monitoring.  I checked into the hospital on September 27th, almost a full month before her due date.

Unfortunately, Dr. Awesome had already scheduled a vacation to England and left two days after I was admitted and my care was then turned over to her partner, we will call her Dr. A$$hat.  After 5 days of continuous monitoring Clara was remaining healthy but I was tired of being in the hospital so Dr. A$$hat ordered an amniocentesis to see if her lungs had developed enough for delivery.  They were developed but she had also passed her first meconium so it was GO TIME…stat C-section.

Ten Perfectly Long Toes
My beautiful, healthy and amazing girl was born 3:17 p.m. on October 1st, 2007.  10 perfect fingers and 10 very long toes.

After the C-section I never felt ‘right’, they could not give me pain meds or let me sit up because my blood pressure was too low.  The first night was absolute misery, I was in so much pain that I seriously thought I was going to die, but eventually it subsided (Dr. A$$hat said it was gas), useful information would have been that I had a rapidly dropping hemoglobin and hematocrit (she knew it, I did not). 

Dr. A$$hat's general attitude after the surgery.

The next two days were fairly uneventful, I was still in the hospital but I never regained my energy.  This was my third C-section and I knew that things were not quite right but Dr. A$$hat was certain all was well.

On October 4th, I woke up at 2:30 a.m., Clara was sound asleep in my arms but I was feeling a lot of pressure so I decided to use the restroom, I gave her a kiss and laid her in the bassinet…it would be a long time before I got to see or hold her again.  I stood up and IMMDIATELY I was in mind boggling, excruciating pain.  I went to the bathroom anyway just to see if it would help, after all, my genius Dr. had said the pain was probably gas.  No such luck.  Eventually I made it back to my bed to ring the nurse…there was no way I pulling the cord in the bathroom (too stubborn).

My amazing nurse (who saved my life) came in and in less than ten minutes had my stats checked, IV started, x-ray ordered, blood drawn and was pushing me down the hall to x-ray.  I could hear Clara crying as I was wheeled away in my bed, screaming in pain.

Her big sisters love her to pieces.
My initial H&H came back at 5 and 18…not completely compatible with life but very indicative of hemorrhage (internal or otherwise).  The Dr. decided to order an x-ray which does not show internal bleeding (she had decided I had an ileus and was just a whiner) and the x-ray was, of course, normal.  It showed that my lungs had partially started to collapse but it was not significant beyond that.

At some point while I was in x-ray the pain got so terrible that I literally had an 'out of body' experience.  The tech kept shoving the film into my back which is exactly where all of the blood had pooled.  My kidneys, liver, bladder and lungs had been displaced by the blood clot and she kept ramming the hard film right in to it.  Eventually it became too much and it was like I was floating in the corner watching it happen to someone else.  Ironically, I have never before believed in the 'out of body' phenomenon and I still am on the fence about it....even though it happened to me.

On the way back from x-ray (which took almost 90 minutes to get decent films since I was unable to move) I informed my nurse that I was going to die.

That got her attention.

My super awesome nurse trying to hang my blood products fast enough to keep my H&H stable.
Dr. A$$hat had said the films were fine, I was fine, she wanted her sleep.  My nurse decided to take my blood three hours earlier than ordered because she could see what was happening.  The nurse also told Dr. A$$hat she could send me for a CT or she would be heading to the ER to get a “real doctor” for me.  While in CT my blood work came back and I was bleeding out (internally) rapidly.  When I returned from CT shit got serious.  Bags of blood were hung, more IV’s were started, I had so many medical staff around my bed it was scary.  At this point I could hardly see, my O² sats were dropping, and I think everyone thought it was over for me.

The charge nurse's feelings about the doctor
shoving the consent form in front of her IV needle.
I will never forget when the Dr. tried to get me to sign the consent form while the charge nurse for the hospital was trying to start my IV.  She kept trying to shove a pen my hand and the nurse kept losing my vein.  The nurse stopped, gave her the dirtiest look I have EVER seen and said "this IV is far more important than your f-ing piece of paper."  Me, ever the peacemaker was all…”I’ll just sign it with my left hand.”

By the time they wheeled me into the OR I honestly did not care if I lived or died I was in that much pain.  I had always thought that I would fight for my life tooth and nail, and I did, but with no blood, no oxygen, and no pain control the struggle seemed futile.  It’s almost like your body knows you cannot use the energy to fight, you have to mentally stay calm and let it do its work…it is far more capable of making good survival choices than you are.

Visiting me in the ICU.
When I woke up in the PACU I was still intubated and panicked.  Nurse Smokey McSmokerson kept trying to calm me down but she just made me glad that something was breathing for me.  I was able to write that I wanted my normal Internal Medicine Group in charge of my care rather than the hospitalists but that was about it.

Eventually they got me settled in the ICU but I still had no clue what had happened and what a long road I was about to travel to recovery. 

Through this I ended up receiving more than 12 units of blood, 7 units of Fresh Frozen Plasma, multiple units of platelets and whatever else they could pump into me.  It was not until my husband was able to come see me and I could write to him “where is my uterus?” that I knew for certain I had a hysterectomy.  Of course, as the daughter of a pathologist I had to know *exactly* where my uterus was and why it was not already enroute to the AFIP...come on people, let's get it together.
Barely alive in the ICU...
but my sweet babies came to see me.

I can remember still being on the ventilator unable to speak and the nurse was counting my staples, 57 straight from my chest to my pelvis.  It took me over a week before I would leave the ICU and almost another week to come home.  They were very good about allowing me liberal visits with my baby (even in the ICU) but it was not the same.  I spent many moments in tears, lots of time in pain, but at the end of it I had the perfect baby I had dreamed about.

My parents and my reaction to
Dr. A$$hat, after they took
another 15 or so tubes of blood from
me...shocker, I had NO bleeding disorder.
She really is an A$$hat!
Dr. A$$hat kept coming in to reassure me that I obviously had a bleeding disorder, none of this was her fault, and since I had just had another major surgery I could bleed out at any moment.  Clearly, this was entirely a case of a botched C-section by an incompetent surgeon, who is no longer delivering babies thank you very much.

My student loan servicer just sent me a birthday card.
My Reaction to Dr. A$$hat!

For Clara’s first birthday party we had a huge blood drive at our church to celebrate the nameless, faceless, blood donors who gave me the gift of my first year with my daughter and an additional year with my first two miracles and my wonderful husband.

Clearly this was the beginning of a journey…there were funny moments, sad moments, and moments so tender and loving that I have come to love and appreciate my family in ways I never thought possible.  My body is still suffering the sequelae from this event, my most recent post hemorrhage surgery was just this past August…but I try with everything I have to be a loving parent, an active parent, I still run and teach aerobics and I REFUSE to stop.  If anyone can appreciate how precious and tenuous life really is, it just might be me.

Leaving the hospital, long before I did.
What has changed your perspective on life?

Have you ever thought about an out of body experience and do you believe in them?

Monday, October 22, 2012

Why do I run?

Cherry Pit Ten Miler
One of my very best race days!
You would actually be surprised by how often I get this question and I never really have just one answer, it usually depends on what day you ask me and where I am in my training.

About seven years ago my sister Kim told me that she was going to run a marathon and I think my response was not your typical congratulatory cheer and shout of encouragement, in fact, it sounded *exactly* like, “What????  Are you stupid or something?  Did mom and dad drop you on your head as an infant and forget to mention it to the rest of us?” 

Clearly I am the bitchy sister.

Kim trained for and ran in many marathons, over time I became more supportive but was secretly cheering my obviously superior IQ (because really, 26.2 miles for fun, I mean that’s just asinine).

Then I got cancer…

Turns out I never ran because I had large (HUGE) breasts.  Deep down I knew that the four bras I had to wear for field hockey and teaching step aerobics dug deep into my shoulders, but I was in shape, I figured I could run if I wanted to, I just did not want to.  The only time I ran was when a team I was playing on lost…then I did laps.  Lots of boobie bouncing, shoulder blistering laps.

Back to the cancer. 

After a double mastectomy and a huge breast reduction (I went from a duckpin bowling ball to about a tennis ball) I was very slow returning to my normal exercise regimen.  I was only allowed to walk and since I had a 7 month old baby girl, she took her morning and afternoon naps in the stroller.  I healed and progressed, eventually I was walking 12-16 miles each day.  Then I got bored, so I started jogging to one mailbox and walking to the next, as I continued to recover the walking portions became much shorter than the jogging portions.

After a year I was going for regular runs.  I still thought a marathon was a ridiculous distance and I was going to just stick to running 7-10 miles a day like any *sane* person would do.  My run became a very necessary part of my day, my personal time, I had been through a lot and needed the one thing a run always offered me, a quiet mind. 

Over time I began running with friends and they told me I was doing quite well but I never really thought about it as a sport, it was honestly my outlet, the only time I was not feeling scared and anxious.  I had not discovered the joy of wine and I had quit smoking years earlier.  It was literally my only vice (not a bad one, right?).

I had a friend encourage me to run the Cherry Blossom Miler in 2010 this was my very first race, I ran it in 1:22:16 and thought nothing of it.  I took it easy, enjoyed the course and loved being surrounded by people who loved running as much as I did.

Overall Female Champion...Lucky Number!
The next weekend however I had an epiphany.  One of the biggest local races we have is the Run for Hospice and I chose to run the 10K, it was just for fun and the whole community is out for this amazing event.  The biggest surprise for me was finishing as the 2nd overall female in the race (only 2nd to my good friend who is one of the fastest female runners I have ever met).  At this point I decided to explore running as a sport rather than just my own personal happy place.

I have continued my running and expanded it in ways that at one time I thought were crazy (now I KNOW they’re crazy) I win some, I lose some, but I always learn a lot.  I know that I am happiest when I am running and that my sister had it all wrong, her mistake was in settling for a marathon.

Why on earth would you run a marathon when there are ULTRA MARATHONS?  This year I qualified for The Boston Marathon and will run it in April.  After that I plan to stick with the smaller, lower key events.  The kind or races where you meet the other runners and learn what their motivation is, how their life and running brought them to this place. 

Since beginning this journey (2 ½ years ago) I have run three 10Ks, two 10 milers, two ½ marathons, five marathons, four 50K’s, a few longer distances which just make me sound crazy, and too many 5K’s to count. 

Clearly I lost my marbles at some point but it is the one activity that keeps me grounded and is just for me.  I have found my happy place and I am going to run with it.

If you’re a runner, what’s your motivation?

Have you ever thought someone was crazy for doing something and then not only done the stupid thing, but loved it so much that you even took it to the next level of stupid?

Thursday, October 18, 2012

Amazing Grace, I once was lost but now am found, was blind but now I see

Looking just as horrible as every other new mom!
"For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God—not by works, so that no one can boast. For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do" (Ephesians 2:8-10). 

I will be the first to admit that I have led a fairly charmed life.  We all know there were a few crap years scattered in, some extremely life changing events, but honestly, years 1-29 were pretty much some seriously awesome real life perspective for the writers of “Leave it to Beaver” and “The Brady Bunch”.  I cannot tell you how many times Alice the maid (really it was my mom, but Carol Brady did not do a damn thing…it was all Alice) was helping me win a teeter-totter-a-thon or make all the goodies for a lemonade stand.  We are talking Pork Chops and Applesauce here folks.

When my first child was born I simply assumed my good fortune would continue (I think we can insert some sort of foreboding music here), and honestly it did….for a time anyway.
When she was seven weeks old I started to notice that she seemed listless a lot of time and NEVER slept (I clocked it, a grand total of 7 hours in a 24 hour period with 90 minutes being the maximum asleep time).  I was miserable, she was not fussy as long as I held her and rocked her.  Finally I decided to make an appointment with the pediatrician, it was the final appointment of the day and all of the staff had gone home.  He did an extremely thorough examination and I kept waiting to hear the “new mom/idiot” speech but he was oohing and aahing and flashing the otoscope light in her eyes A LOT.  At one point he said, “Well it’s not cataracts”, I’m all WTF???  So with no further ado he said to give her Benadryl and come back in the morning.

Clearly I went home and drank wine, it was a pump and dump kind of night…I vaguely remember it well.

So, the next morning I went back to the pediatrician’ I had skimmed over the events of the previous days’ appointment with my husband and mother but did not let on my true level of concern over:

a.   What I had been seeing with Grace; and

b.      The pediatrician’s response to it.

So again he looked at her, looked at her eyes and said he wanted her to see an ophthalmologist, I was finally done playing games.  I looked at him square in the eye and said, “I need you to tell me right now what you think is wrong.  That is what I deserve, this is my child.”  His response, “I think this child is without sight and I have never said that to a parent before.”  Now that’s a conversation stopper. 

I partially recover, my eyes start welling up and he puts his hand on my shoulder and says, “It’ll be OK mom”.

This was a Friday morning so I left with a referral for a Monday morning ophthalmology appointment.  I called my husband and left the calmest message on his voicemail and then I called my mother and completely LOST MY SHIT.  So I am driving home from just hearing I had a blind child, talking on the phone, and having my very first panic attack.  I am screaming at my mom that the baby is blind and I can’t breathe and she’s all, “where are you?”  I shriek back that I am driving and she points out that perhaps pulling over might be the wise choice.  Moms are so stinking smart.

I finally get home and start harassing my child by playing eye tracking game after eye tracking game…btw, I totally won since she was blind and all.

Luckily I called my neighbor and told her what was going on and she told me to sit tight as she called her friend (an excellent ophthalmologist) who said we should come right away. 

My neighbor came with Grace and I to the appointment and I met one of the sweetest women that afternoon that I will ever have the privilege of knowing; Dr. Kinga Tibold.  She spent almost an hour with Grace and was in complete agreement that this beautiful baby girl could not see, but she also reassured me that she did not see a retinal-blastoma and that the anatomy of the eye looked perfect.  It could be delayed visual maturation, or a host of other problems but at least I had an answer, something to go on.

Such a ham...can you believe she did not get her first 
pair of glasses until 7th grade?
Dr. Tibold was amazing, I think I had met her once or twice at a party but she did not know me at all.  I think as a mother of three girls herself she simply wanted to help and quite frankly, at that moment she was the only person I knew who could.  To top it all off her office did not accept my insurance so I was prepped and ready to write a check and she just waved it off.  Gratis.
I cannot speak for everyone, but these days there are not a lot of people with that level of compassion.  It was like she knew I was experiencing the worst day of my life thus far and she just wanted to make it easier in any way that she possibly could.  From that day forward I have always looked to her as one of the finest physicians I have had the opportunity to work with and will forever trust her judgment, professionally and personally.

The following Tuesday we took Grace to the Wilmer Eye Institute at Johns Hopkins and they agreed completely with Dr. Tibold’s assessment of the situation.  We were many tests away from finding the reason for the blindness but we knew it was not cancer and that was good enough for us.

Not quite to peek-a-boo but still super cute!
As the months and weeks followed we learned that Grace had Ocular Motor Apraxia and a Dandy Walker Variant.  We were really given no hope that she would ever see but we were provided with wonderful vision therapists through Maryland School for the Blind and the amazing therapists from the St. Mary’s County School system who are still working with Grace today.  It felt like every week we had an MRI or another specialist appointment but we wanted to do everything possible to achieve the best possible outcome for our sweet girl.  We even took her to see a vestibular eye movement specialist…who knew?

Through all of the testing, poking and prodding, they never actually DID anything to her, no procedures, nothing.  It was discovered that she had a Dandy Walker Variant in her brain that basically had caused the portion of her cerebellum responsible for sight to not develop but everything else was fine.  We even went and saw world famous pediatric neurosurgeon, Dr. Ben Carson at Hopkins many times over the next ten years but he kept shying away from actual surgery.  This was a blessing as we later discovered that surgery would have killed her since her cyst was connected at the fourth ventricle and would have caused her to have a massive brain bleed.

In the midst of all of this I got pregnant with our second daughter and we were ecstatic. When I has pregnant with Grace I imagined nothing less than the perfect child with absolutely no health issues (she really is perfect, LOVE HER) but with the our second daughter all I cared about was a having a child who could see. During my third trimester we drove up to Hopkins to get a special ultrasound because of all of the Malformations that Grace had in her brain. This was the day my life was forever changed because my very perfect baby girl, Sarah, had no heartbeat. We went home and after 50 hours of labor, with almost every conceivable complication, I delivered a very perfect, very much forever asleep, baby girl.

With sadness and grief each day came and went I worked with Grace and helped her learn to navigate her world.  My husband and I were enveloped in such sadness but also an odd sense of hope.  She was clearly a determined child and was just so loveable.  She was at the point that she knew when we were nearby and would giggle and smile. 

One day my sweet girl started playing peek-a-boo with me, at first it honestly did not register.  This was clearly a game we did not play, after 15 months of no vision, playing “now you don’t see me, now you still don’t see me, oh look wait, hey, you still don’t see me….peek-a-boo” was not at the top of our list of therapeutic family fun games.  Suddenly I realized what was happening...Insert light bulb flashing over my head here!!!!  OH MY GOD!!!!

This child had been prayed about around the world.  Could it seriously be like the song…”I once was lost but now am found; was blind but now I see.”  Oh my sweet Amazing Grace.  I of course got so excited that I made the poor child cry, but she could see!

Not perfectly at first, she could not even focus for more than a few seconds, but it was something.  Finally, a little hope. She was about 18 months old before she had any meaningful vision or eye gaze, but we were on our way and so incredibly blessed.  Apparently brain cells are multi-plastic until about age 12 and since she was short a few vision cells, other cells took over and allowed her to see. 

There are still miracles and through faith and prayer we can even see them occur, most are not this obvious and clear but they are there. God is very good to our family and we continue to see His work in our lives as we put our Faith in Him in all things. Once you see His work in your life in such a profound way you realize that God's Grace is the biggest gift you can be given, but one you never deserve.

She is now in the 9th Grade and is in all honors classes, she is hoping to go to the tech center and learn to be a nursing assistant. She would like to continue on to earn a BSN and become a pediatric nurse. She is Grandma’s girl and the two of them are like frick and frack. Our Gracie Hacie has reminded us that miracles do happen…so often we think of miracles as a phenomenon of long ago…a Biblical story or a Guideposts moment.  I am here to tell you that they happen, sometimes to people you know.
Grace was quite the rider,
this is her favorite pony, Jerri.
Today Grace loves all animals, Sugar Gliders
are kind of her new favorite...Kinga...

Cowgirls vs. Cancer

My final day at the ranch, just before the early June snow began.
Francine G. Photography, Breast Casting
“Cowgirl is an attitude, really. A pioneer spirit, a special American brand of courage. The cowgirl faces life head on, lives by her own lights, and makes no excuses. Cowgirls take stands. They speak up. They defend the things they hold dear.”
Dale Evans Rogers, Los Angeles, 1992

Going into the Cowgirls vs. Cancer retreat I read this quote over and over and kept saying to myself “you’re a city girl, born and bred”….but deep down I knew I had it in me…I knew I had faced life head on and shown my own special brand of courage.  For me, getting diagnosed with breast cancer and being told I had to have a double mastectomy was simply the final check on a list of very bad luck. 

My first daughter was born blind, my second daughter was born asleep, we were blessed with another daughter on our third try, but our fourth daughter also died before being born.  When I was pregnant with my last child I prayed each day for a living, breathing baby…I was heard, she was born perfect, healthy and beautiful. However, I immediately started to hemorrhage internally and it went undiagnosed until I had almost died, over 20 units of blood products were used to save my life, but it was too late to save my uterus.  My baby went home two weeks before I did and even though there was pure joy in this perfect new life, there was also a lot of recovery, both physical and emotional.
Needless to say when I was diagnosed with cancer seven months later I was completely broadsided.

My first day at the ranch, I felt like I belonged in the Athleta
catalog, given my outfit and beautiful scenery.
All through my surgeries and treatment I was literally on autopilot.  I never once let myself feel anything emotional connected to my cancer or my breasts, I barely had the energy and emotion to give love to my husband and children….most of my heart was simply broken.  I felt like the physical pain and mental anguish in my life would never end, all I had experienced for 8 years was loss after loss.  

One of the hardest things for me was that I lived far away from my close friends and family. We live in a small town and I had to travel 1 ½ hours each way for all of my treatment; I felt isolated and alone.  There were no young breast cancer survivors near us and it was hard to be around women my age listening to them talk about their seemingly perfect lives.   What could I add to the conversation?  Nipple reconstruction options or perhaps the benefits of pr/er + cancer over the triple negative kind.  I think they were more interested in paint colors than 50 hours of labor for a stillbirth and I completely understood, but it left me adrift.

As I healed I began to run, I started with slow short distances and morphed into a powerful distance runner, the problem was I was mimicking a horse, when presented with the flight or fight response I was fleeing, as fast as I could.  Running was my escape from reality but when I would stop I was unable to deal with all of the horrible events up to and including my cancer.  Eventually I learned to completely disassociate myself from all that had happened in an effort to simply survive each day and take care of my family.  This put me distinctly into the category of “surviving” rather than “thriving”.

The deer participated in our morning meditation.
Enter Montana, Cowgirls vs. Cancer and Margaret Burns Vap.  My sister nominated me for this award and she started my healing process with her essay, reading how highly she thought of me and my indomitable spirit gave me hope.  A hope I had not felt in a very long time.  Margaret and her mighty crew put together a weekend with a lot of love and thoughtfulness.  From the moment our first group yoga session began until the moment I tearfully left the Double T River Ranch I felt support, comfort and kinship. 

This was the first quiet and reflective time I had experienced since my diagnosis.  It was amazing to be able to connect with women who had heard the same words I had, “you have breast cancer”. 

Janice, what can I say?  She is perhaps
one of the kindest people I will know.
While on our retreat we were pampered beyond measure, as a stay at home mom of three and part time fitness instructor I was not prepared for organic gourmet meals each day by Chef Kate.  Taking care of children is an amazing job but it has no pause button.  THIS was my pause button.  It let me honor my body, honor how it changed…in some ways much weaker, in others stronger.  Even the deer cooperated.  As we came out of morning meditation they quietly crossed the river reminding us of the majestic beauty that is Montana.

 Janice and Ron gently and kindly taught us to ride our horses, Ron was even kind enough to turn a blind eye if you gave his horse a kiss and a hug.  While riding I was reminded that if I wanted to succeed in riding or in life I had to be the one in control, each move I made the horse naturally responded to.  Learning to make the right move/choice can be hard, but it is always successful.  Janice, with her beautiful face and kind smile reminded to me to stay calm (the running joke was my “unusual” energy level, read:spastic).  Ron and I had long talks and his wisdom and understatement will forever take me back to Montana when I need to find my calm in the storm.

Ron IS the calm in the storm.  Quietly hilarious and
infinitely perceptive, my friend.
My story would be lacking in so many areas if I did not mention Jessica, Addie and Vi.  Jessica taught us to meditate, to find comfort and peace with a still mind…this has never been achieved in my life.  Addie donated the use of the ranch and brought a smile to my face each time she walked into the room…a true ginger and even a birthday double.  Vi helped to release us from tension with massages designed with the breast cancer survivor in mind.  Each detail so tailored to our specific needs from beginning to end, God Bless Margaret.

Margaret Burns Vap, the beautiful face behind the concept.
Horses, yoga, and breast cancer.
Simply Genius!
Margaret and her team are selfless and generous, the type you may only experience once in a lifetime.  The love and compassion they brought to the retreat was genuine.  Each time they give of their time and their hearts to us, the survivors, they risk forming a relationship with someone who has a higher than average risk of dying.  They give us unconditional love, support and opportunities for growth and healing, before, during and after the retreat.  Margaret’s knowledge of yoga and gentle approach to teaching it were perfect for the novice to advanced yogini, her investment in our entire experience takes benevolence to new heights.

Now as I continue my journey I am not alone.  I have women I know I can relate to, they share my struggles, we shared an amazing weekend and I will consider them friends for a lifetime.

May these hands stay healthy, strong and happy.
Larry Stanley
When I look at the picture of our hands on Dude I can identify whose is whose and intimately know their story.  Two of us cradled our infant children as we dealt with chemo and drains. Three held the hands of friends and family as they battled this horrible disease at such a young age.  One held onto her husband as she bravely faced her treatments and managed to nurture a camp full of boys in the process. 

These could be the hands of anyone, but they are not.  These strong hands belong to invincible women that are still impacting my life and lifting my spirit.  These are the hands of women who continue to work, love, inspire and hope.  They are hands that tremble with each follow up appointment and clap and hold tight to loved ones when the news is good.  They are also the hands that hold tissues when the news is not as good.  Either way, they are the hands of women I have come to love.  Myself included.


Tuesday, October 16, 2012

My story...condensed

Me today, happy healthy and strong.

Before I was diagnosed with breast cancer, I knew I was a survivor.
On October 1st, 2007, we joyously welcomed our third daughter, Clara Elizabeth, into our family.  The C-section went smoothly and we were looking forward to a speedy recovery.  Things did not go as planned.  Sixty hours after her birth, barely alive, I was rushed into surgery to evacuate a massive retroperitoneal hemorrhage, so large it had displaced my kidneys and bladder and had even caused my lungs to collapse. 

Barely alive after multiple blood transfusions.  At least I'm off the ventilator!
I woke up in the ICU on a ventilator, 57 staples running from my chest all the way down, minus a uterus, and a long way from recovery.  My baby, along with my dreams of a large family went home two weeks before I did.  It took an amazing nurse, many generous blood donors, extremely supportive friends and family, and a lot of inner strength to begin healing.

This was the end of a long journey for my husband and me.  Our first daughter was born blind (our Amazing Grace who can now see), our second daughter was born asleep; we were blessed with Ella in our third pregnancy, but lost another daughter on our fourth try.  We were physically and mentally exhausted.

When Clara was 7 months old I decided it was time to get a physical, with a family history of breast cancer this always included a mammogram even though I was only 36. 
Obviously I would not be writing this essay if the results had come back clean and clear.  After 7 months of constant medical appointments dealing with the aftermath of a horrific birth experience I was about to fight for my life one more time and I was not sure I was prepared for battle.
In life it is so amazing how quickly our perspective can change. 

As I went through the normal battery of diagnostic testing we were thrilled at how BLESSED I was to have DCIS.  Since both of my breasts were scattered with DCIS coming to terms with a double mastectomy proved to be very difficult for me.  My breasts were how I fed and comforted my babies.  Clara was only 7 months old and I had just lost my uterus, could I really stand to lose all my female parts in under a year?  Would I ever feel like a woman again?  Would a love of shoes be all that separated me from the boys? 

Again, after almost dying in child birth and then getting a double mastectomy less than a year later I found myself proclaiming how BLESSED I was, negative nodes!!!!  Perspective is an amazing thing.

As I began to heal from yet another major surgery I started walking daily. Clara took her morning and afternoon naps in the stroller as I pushed my way back to health.  After several months I began jogging between mailboxes….this was a MIRACLE!  Having developed large breasts in the 6th grade I had literally never been able to run, I could teach step aerobics and spinning all day long, but the repetitive motion of running was too hard on my breasts and back. 

As my body regained its muscular strength, I was regaining my inner strength.  I am a longtime group fitness instructor and have had the opportunity to help so many women as they heal from breast cancer treatments.  I am able to listen and relate to their struggles as I teach them to exercise slowly and safely.  Each time I get another survivor physically ready to return to their normal lives I feel like I have beaten cancer one more time.  Our minds heal so much more quickly when we are moving.

Our bodies can overcome so much and with enough work, passion and dedication it is possible to come back and be as strong as or even stronger than before.  We are often surrounded by people with excuses or an “I can’t” attitude, being a warrior against breast cancer shows us that obstacles are meant to hurdled, cleared or completely obliterated! 

Having never run before cancer, I have now completed five marathons (even qualifying for the Boston Marathon by ten minutes), many 50Ks, and other (even longer) distance races.  I was the first place survivor at the 5K Komen Race for the Cure in Maryland last year...tears of joy streaming down my face as I crossed the finish line, completely decked out in a pink tutu! 
Life is good and I am happy to say how incredibly BLESSED I have been! 

My husband Mike and three daughters were at the finish line when I qualified for Boston, these are my true blessings.