Merry Christmas & Happy New Year

I've been behind getting my posts updated, so as I sit here for a few minutes before I get dressed to go to work on this Eve of the New Year, I thought I would throw together some photos from our holidays.
We celebrated Christmas Eve at our house this year with a Mexican Food Fiesta-complete with Aunt Kathy's bean recipe.  Missed not having my brothers here, hint hint.  Maybe next year we can all do Christmas together!
 I think the most entertaining event of the night was our annual kid competetion gift.  This year I wrapped up gift cards in two plastic bowls I taped closed with packing tape, then proceeded to cover it with layers and layers and layers and layers of packing paper and packing tape until the gift ball was a little bit bigger than the size of a basketball.  Then we give the kids oven mitts and one minute each to try and get the gift open.  They keep going until the winner is the one who finally figures out the trick to packing tape.  Let's just say it took a few turns, but Parker finally won.  But with much help from the girls who realized that brute force strength was not going to get it open, but to try and find the start and end of the packing tape and peel it away!  Unfortunately I didn't get any photos of it, because I was too busy laughing and videotaping it!

The Hailes, Gunthers and Rawleys Christmas 2012

One of Christmas tress

this is just the gifts from our exchange!

Me, Mom and Kim

Ethan's pile of gifts, and a dog butt

Frankie liked Ethan's dancing sock monkey

Parker loved his new docking station alarm clock

And all his new golf shirts

Haileys new Coach wristlet

And these strange leopard print Sperrys

Merry Christmas from the Rawley crew!

 

The kids were all very happy with their gifts this year, and very thankful and grateful.  I love all my new jewelry-thanks Anthony for hooking a hubby up-and my new Bose headphones so I can start rocking out while working out again!

 



We enjoyed our annual NYE lunch today at Fogo de Chao and this year took my nephew Taylor and my Dad.  It was fabulous as usual-and fun to watch the boys flip their cards over and watch a slew of gauchos show up with their specialities!

My daughter is in Wichita for a NYE Party, the boy is at his cousins-complete with a bottle of Sparkling Red Grape Juice and a mad game of Monopoly.  Brian, the bald kid and the dogs are chillin out watching DVR'd football games, and I'm getting ready to go to work.  So, if you're going out tonight-be safe, don't drink and drive, I would hate for you to cause an accident or get a DUI, but most of all, I would hate to see you on my CT table

.I can reflect on 2012 as a most interesting year for us to say the least. A lot happened, and we had lots of family and friends there to support us. We are looking to pay it forward in 2013. If we've realized one thing this year, it's how forunate we are, and even when things looked at their worst-our laughter and positive attitudes pulled us through.

 I'm as happy and content as I've ever been today and am hoping 2013 continues to bless us.



 

May the New Year bring you much health and happiness!

 

Love,

Brian, Kari

Hailey, Parker, Ethan

Harley, George and Frankie

Tears

As I logged in to type this post, the TV program Face The Nation just ran the photos along with names and ages of the victims of the Sandy Hook Elementary school shooting.  I have purposely stayed off the Internet and FB, and avoided the news this weekend, but in this last 30 seconds of silence I watched.  Out of respect for those innocent victims and their families, I watched and I wept.
From the safety of my bedroom, with my children snuggled in their beds, tears stream down my face and onto the computer.  The words on the screen are blurry from my tears. Now I offer a prayer for those grieving families for some strength, peace and comfort in the days to come.   And prayers of strength for all those exposed to the evil act that happened at that school;  the surviving staff and students, the First Responders-EMS and Police Officers, and the hospital staff who received victims unable to be saved.

Over the last couple of days as I have spoken with friends about this horrific tragedy, voices got quiet, eyes never met, and the conversations were short as heads were bowed and shook. Lumps formed in our throats and tears in our eyes.  As a mom, I don't want to think that this is possible in my children's schools.  But in fact, in reality, it could have happened anywhere.

Times have changed.  The days of tornado drills being ran monthly have given way to "active shooter" drills and "lockdown" drills in our schools.  I can't help but feel helpless to these changes.
As a parent, I want to protect my children, yet I want them to be very aware of the world we live in today.  Which leaves me with that helpless feeling. Worrying about strangers has given way to worrying about guns and drugs in schools.  
 I question how have we gone so wrong as a society?  Are we all so busy that we can't take the time to look out for one another?  Yes, is the answer.  And I am just as guilty as the next person.
Maybe if we all took a little time out of  our busy lives to notice a struggling, sad, disconnected peer, some of these young people wouldn't feel violence is the answer.

I will not debate gun control, mental health issues, God and prayer in school, or any other issues people want to blame this tragic event on.  I will tell you I intend to spend more time with my family getting back to the basics.  Stressing the importance of  treating people with kindness and fairness. Eating dinner together. Turning OFF the TV and the Playstation, the iPhones and the iPads.  I think we have forgotten the importance of time.  The time we give to our children, our spouses, our friends. Our precious time is whittled away from the everyday things like work, and before you know it, that time is gone.  Time is the best gift you can give, especially to your children.  And while those families no longer have time with their loved ones, I will not squander the opportunity I have with mine.  My responsibility as a parent is to grow and foster a contributing, caring, productive member of society, and I promise to spend more time doing just that.

As a police wife, my heart goes out tonight to law enforcement families. 4 LEO's have been killed in the line of duty this weekend.
In Memphis, TN a 9 yr veteran, mother of four, was shot and killed serving a narcotics search warrant on Friday.
In Washington County, Missouri a Sheriff's Deputy for only two months lost his life on Saturday.
And tonight, in Topeka, Kansas,  2 officers were fatally wounded.   At this time the suspect is still at large.
My husband celebrated his 44th birthday this weekend, and I thank God every day he walks through our front door after his shift protecting our city. But the fear is always there.  After 14 years together I never take for granted the time we have together, as each shift could be his last, but I have learned to accept what is, and law enforcement is what he loves and what he does.  

Lots of tears this weekend.  And lots of prayers.

Home, happy and healthy

Got home Wednesday afternoon about 2:30, and after much to do, no real answers. Which is what I figured.
Lab came by at 0400.
Hospitalist came by at 0730ish. She was very nice and was pretty sure they would discharge me by the afternoon pending a visit with the Cardiologist and some more labs.  My potassium hadn't even come up a point, so they gave me four more of those big yellow pills and she wanted to see if that would help bring it up before she cut me loose.
Dr Brick Rigden, the cardiologist came by around 0900ish, and I loved  him!  He was very curious about me working nights, what my hours are, how many nights a week I work, do I switch back to a normal schedule on my days off, how many patients do I scan a night, and so on and so forth. I think he was trying to find out if I was more stressed out than normal, thus causing the heart rate issues.  Especially when he found out how crazy this year has been for us!  When I explained that I do crazy well, and in fact if things were ever normal around our house, THEN I might have a nervous breakdown.  He laughed.  Oh, if he only knew.
  Anyway- he explained he is sure I had an episode of SVT or supra ventricular tachycardia, and there are 4 main types of SVT and none of which are life threatening, mostly just annoying.  Since we didn't catch the episode on EKG, we don't know what type mine is. Though we do know its not Wolf Parkinson White, even though WPW can run in families and is common in first degree relatives, and my son and sister had it.
 He offered that there are 3 options-
wear a holter monitor and try to catch an event on it-yeah, no thanks, my luck I would wear it and nothing would happen again for a year.
start on a daily beta-blocker-umm, nope again. I hate drugs. Except the good ones. Like Dilaudid.
Go to the cath lab and have it ablated-yeah, definitely not gonna happen.
Dr Rigden agreed with me that just waiting to see if it ever happens again, and it may never, then we would do something.
He did make me promise that if it did happen again while I was at work, I was NOT to go to the ER and get another patient to scan. Guilty. And I was NOT to go to the cafeteria and get a glass of water. Guilty again. ( I thought I could walk and will it away). I was to go to the ER and get an EKG-right then!
He still wanted an echo, just to make sure I didn't have anything structurally wrong with my heart that could have caused it.  Echo was normal except for some mild aortic valve leakage, nothing he would be concerned about unless I was to ever receive more chemo.
Oh, and I was to slow down.
I laughed again.
Not likely, not likely.

On an even better note, I saw Dr Sheehan at the Cancer Center this week, and my lab work has come back great so far. My tumor marker, or CA 27-29 dropped to a 23!!  That's a 17 point drop from my initial one of 40!  It just has to stay below 38 and all is good!  They re-checked my Vitamin D level because I've had some serious tooth achiness recently, and when it was low over the summer, my teeth ached.  However, Dr Sheehan felt like it was still some residual pain from the Taxol I received, even though I haven't had chemo since July!  Ugh!  The Vit D isn't back yet, probably tomorrow, but I've started back up on some anyway, though it doesn't seem to be helping.

Otherwise all is well.  Kids are good, bald kid is fighting a cold now for like 2 weeks, but who isn't?  Hailey has started club volleyball practice and conditioning-gonna be a fun season with these girls!  And Parker has been perfecting his golf swing at the golf academy and in our basement.  The weather has even been decent enough lately that Brian has played a few rounds in the last few weeks.
We got the house all decked out for the holidays, and are getting our pics taken for our Christmas card this weekend.  Can't hardly believe the end of November is tomorrow.  
Stay safe, warm and remember those less fortunate as we begin the busy Christmas countdown.

Thanks for all your thoughts and prayers for all of us this year!  One more month and we can close the book on 2012, welcoming a brand new year full of *hopefully* many less surprises!  

Admitted

And this time it's not the bald kid, it's me.  Cause if it's not one thing with us, it's another...

Long story short, went to work Tuesday night, feeling fine and within 2 hours was in the ER.  Out of the blue my heart started racing and by monitor it was 180-200, and my blood pressure was 157/100. The pressure I started feeling on my chest finally sent me to the ER, that and my co-workers coaxing.
 By then my heart rate had come down to the 130's, but I felt like I couldn't catch my breath.  

Most of my lab work was normal-my magnesium and potassium were low which lead them to believe I was dehydrated. But after 2 bags of fluid, mag and potassium(huge pills by the way-can't believe I choked them down) and two trips to the potty, my heart rate would shoot up to 130 once I changed position from sitting in bed to walking.   My d-dimer was slightly elevated, which can indicate a clot or pulmonary embolus, so I got a CT of my chest too. It was negative for a clot, but showed some atelectasis-or poorly inflated areas of my lung. Which sounds way worse than it is, but enough to warrant some breathing treatments and my own personal spirometer.

So, anywho... I'm chilling out in 1099.1 waiting to see what's in store for me when the attendings arrive-probably an echo. We have a history of Wolf Parkinson White, an electrical heart issue, in our family-Ethan and my sister Kate, so I will be looked at closely for the same type of problem.

Thanks to all the wonderful ER staff who took care of me, and one of my fave ER docs, Dr George.  Thanks to my X-ray peeps for my CT scan and covering my shift and making me laugh. And my sleep deprived husband for sitting by my side, and my other husband Aaron for bringing me some stuff from home.   Love you all!

I'm gonna get some sleep now that lab is done before the day shift rolls in.  Will keep you updated!

Thankful

I awoke Thanksgiving morning to the sounds of the bald kid laughing in his bed, my husband snoring beside me, the dogs racing down the stairs and Hailey and Parker conspiring to see if I would let them make a trip to Dunkin' Donuts.  I lay there for a moment and thought to myself just how much I have to be thankful for.  So much, that there is not enough space to list everything.
As everyone I know, and all the 'thankful' FB posts state-the typical thanks for the things we often take for granted every day-the love of our family and friends, our jobs, the ability to provide for our families, the homes we live in, food we eat, beds we sleep in, and our health.  
But more than that, I'm thankful I have been given the chance this year to see just how precious life is.

To be reminded to slow down and roll the window down and breathe in the cool night air. 

To listen to the wind blow.

To stare up at the skies on a clear night.

To smell the fresh cut grass and summer rain.

To not take people or my freedoms for granted.

To hug longer and love harder.

I'm thankful I've been given another year to try to figure out how to make a difference in this world.

I'm thankful for the new people brought into my life this year.  And those that have always been there.

I'm thankful for the smiles, the laughter and the tears this year.  Mostly the laughter.

I'm thankful for all of you.

And Modern Family.

And Raul Esparza the sexy DA from Law and Order.  Hotness.  Seriously.

Breast Reconstruction: Step 1 (of many...)

On Monday Brian and I met with the Plastic Surgeon who will be performing and perfecting my new boob surgery.    Her name is Teresa Buescher, she is at KU, board certified and specializes in breast recontruction surgery.  I had the pleasure of listening to her speak at Gilda's Club in October about the different types of reconstruction surgeries she performs and a panel of women were present each who had chosen a different type of surgery. 

Breast Reconstruction surgery is typically done in stages, as mine will be.  I opted not to have tissue expanders placed at the time of my mastectomy, because, well, honestly it wasn't greatly suggested to me by my surgeon.  He felt the most important thing to do was heal and get through chemo and worry about reconstruction later.  I would have to agree, though I know no different at this point, having been without boobs for almost 9 months.  As it turns out, using such a large chunk of my FMLA for my mastectomy and chemo, I wouldn't have quite had enough time to be off and have my job protected had I done it the other way. 

I love Dr Buescher, and Brian was very pleased with her.  We talked about kids, my job, dogs (she has 8!) and the options available to me.  The route I have chosen to take is not any better/worse than what anyone else you know has/had done.  It's what works for us.  That was the wonderful thing about talking to her.  Whatever works for my life.
 We talked pros and cons. 
I have a job that involves lifting and pulling.
 I have a totally dependent child I need to be able to pick up and carry around.  Forever. 
So, like I said above, it may not be the route your mom, sister, bestie, or cousin's neighbor's aunt's Mom followed, it's MINE.  And no, it's not like getting implants placed for breast enhancement, so many of the typical rules for recovery don't apply here.  I encourage you to share your stories of reconstruction with me, after all, alot of what I know I learned from survivors willing to share with me. And I greatly appreciate their honesty and candor about what they did/would have done different. 
 BUT,  (always a but...) if you think about opening the hole in your face and saying to me something along the lines of how what's-her-stick didn't have to be off that long, or have a drain, or had this/that/the other for restrictions, or anything that remotely feels negative, STOP.  Especially if you've never been through it.

I found during chemo that more than one person said to me "My friend/mom/aunt/neighbor/ what's-her-stick didn't take ANY time off during her chemo....."  Well, I did.  And I felt guilty enough about that as it was, even though you may never have been able to tell, as I just nodded and smiled.   It took, takes work to stop feeling guilty still.   Probably always will.  I don't like to let people down. And I don't like to rely on others.  And though I know the people who said those words to me didn't mean it in a nasty way, the perception on my part of what they said when I already felt crappy, only made it worse.  I won't let someone else make me feel that way. 
So, what I'm getting at is simply this; this is MY choice, MY life, MY story. 
Why share it then you ask?  Because maybe you've been in my shoes and spent too much time nodding and smiling at the things people said to you that only make you feel worse about yourself, and this helps you realize you don't have to anymore. 
 OR maybe you are that person who thought sharing the story you heard would help.  It doesn't, it sounds and feels judgemental, even when it's not meant to be. 
And chances are, if you are following my blog, you love me and care about me, like to read what I write and just want to know what route I've chosen, so you can support me. 
Or your a stalker, and I'm ok with that too. 

Anywho....on to surgery!   I have chosen to have tissue expanders placed in preparation for a DIEP Flap procedure.  DIEP stands for Deep Inferior Epigastric Perforators-or the blood vessels in the lower abdomen.  Flap being skin and fat attached to those vessels. 
The first step being the tissue expanders will be placed on January 25th, 2013. The expanders are a sack with a port on it placed under the Pectoralis muscle.  This surgery takes a few hours, and will keep me in the hospital for a few days and maybe have a drain afterward.  I have a small seroma on my right side from my mastectomy which has never gone away-or a small pocket of serous fluid.  This may be what causes me to need a drain post-op, but Dr Buescher feels is not too significant, and doesn't need to be drained prior to having my expanders placed.
 Below is a good picture of what the process looks like from expander to implant.  She will place the expanders with a small amount of saline initially-only about 50cc's.  Then starting at 2 weeks post-op I will make weekly or bi-weekly visits to the office for them to locate the port and fill the expander with 50cc's of saline at each visit.  The expanders do exactly what the name is-expand the tissue and muscle which I  have lying flat against my chest right now.   Recovery time is 2 weeks of no lifting anything greater than 10-15 lbs, and raising nothing above my head.  Then possibly one more week, depending on how I'm doing at the two week point with arm movement and pain control.  

 

 

 





We will fill the expanders until I am happy with the size, then we hold fills for one month allowing maximum stretching of the muscle and skin.  The fills are quick 20 minute in office procedures with little pain afterward, but no restrictions.  This can take 3-6 months to achieve the size I want, but I can keep the expanders in for as long as 2 years.  Though about 8 months is as long as Dr Buescher likes.  But again, we are on MY schedule.   Below is a more accuarate pic of the what the expander looks like, and the card I get to carry while they are in.  They port has metal in it to help in locating it for fills, but also can set off metal detectors.  So, to hopefully prevent from being felt up by any TSA Agents should my boobs set off the metal dectectors at the airport, I will be sure and keep this card handy....

 



 

 

Remember these are in preparation for the DIEP Flap procedure.  Many women do the expanders, then trade out for implants once desired size is achieved.  I am looking at the DIEP Flap, which will take my abdominal fat and tissue and put it in where my new 'breast pockets'  or 'skin envelopes' have been formed.  The DIEP does NOT cut into the abdominal muscles, so I won't have the concern for lifting or carrying Ethan or doing my job, or hernias.  All in all, it's a tummy tuck/boob job combo.  This procedure is quite more intense than the implant exchange-a 12-15 hour surgery and 6 week recovery.  But it is completely autogolous-or means using all my own body parts. If you google it, the pics are kinda freaky, don't say I didn't tell you.  Dr Buescher specializes in this surgery, which makes me very comfortable with my choice.

 As of right now, I am a candidate for the DIEP, but that could change if I lose weight and in turn tissue off my abdomen.  And since it would be late next spring or summer, I may not be a candidate for this particular type of surgery, and instead do an implant exchange.  That is why we are starting with the expanders for now, and will just take it day by day, or fill by fill, boob by boob til I'm happy and ready. 

I'm excited to start this process, as it kind of feels like a new beginning, and end to my year of cancer.

And I'm ready to have boobs again. 

 

And how appropriate to be starting in January....

 

If the world doesn't end on 12/12/12.



Happy Rad Tech Week!

Happy Radiologic Technologist Week to my fellow co-workers and friends!  The pic above shows basically what I do all night.  Though many times it involves straps, lots of tape and often repeating myself over and over again.  A lot like Motherhood. 
I get to see some pretty cool stuff in my job, and having done it for as long as I have-egads-20 years next July-nothing and I repeat NOTHING surprises me.  Ok, almost nothing.

The x-ray below is of a child who ate magnets. Lots of them.  For the record and HIPPA and everyone I know who reads my blog and is freaking out right now-I found this image on Google.
However, having spent 8 years at Children's Mercy-I took a few of these x-rays.   And if you ever want me to tell you how to remove a coin from a child's throat with a foley cath and fluoro, just ask.  If  I've done one coin removal, I've done a bajillion.

 

 

The above pic is a CT Scan of a brain.  An angry one.  That big white thing-a-ma-jig is a bleed in said person's brain.  Again-Google.  This is what I mostly do. 

 Not find bleeds thank goodness-but produce beautiful CT scans of brains. 

And yes, everyone has one, and no, not everyone uses theirs.

 

I thought I would post an X-Ray Top 10 List in honor of my beloved profession, but am having a really hard time with what to call my list. 

 

Top 10 X-Ray Tech Pet Peeves?

Top 10 Dumbest Things an X-Ray Tech Has Ever Heard?

 

But my list requires many more than 10, so I'm just calling it:

 

A Day in the Life of an X-Ray Tech:

 

1.  No, your other left.

 

2.  No, it doesn't taste bad.

 

3.  Yes, I'm going to put that tube in there.

 

4.  No, I can't do a CT Angio with a 22g. 

In the toe.

 

5.  No, there are no cats in here.

 

6.  No, you will not glow in the dark.  Nor will your pee.

 

7.  Yes, your colon will hold ALL of that Barium.

 

8.  Yes, please leave your shoes on while on the table. 

 

9.  I'm sure glad you decided to come in tonight for that headache of 3 years.

 

10.  The gown opens in the back, yes, but it does tie.

 

11.  No, you did not pee on yourself.

 

12.  Yep, that's gonna leave a scar.

 

13.  Yes, undressing means your jeans too.

 

14.  Kinda looks like chocolate milk.

 

15.  Believe me, we do this all day long.

 

16.  I don't read the pictures, I only take them.

 

and my very favorite...

 

drumroll please....

 

I'm a Radiologic Technologist. 

 

Not a Technician. 

 

I don't do nails. 

 

 

I have had the honor to work with some pretty fabulous folks, and X-Ray people are a species all their own.  They know how to work hard, party hard and get the job done.  So if you are a fellow tech pat yourself on the back today from me, and if you know one-tell them how awesome they are. 

 

 For without us....

 

You couldn't be open to trauma.

 

Enough said.

 

 

Love you Rad Techs! 

*and miss you Kristin Saragusa

 

 

Now for some quick Rawley Family updates:

Halloween was fabulous

The bald  kid was Elliot from ET!

 

Brian and I went to the Radiology Halloween Costume party

 



As the Powder Puff Girls and Mojo Jo Jo

 

And remember how I mentioned X-Ray Techs know how to party?  Well, the Radiologists know how to throw a rager, and didn't let us down this year either!  There was a lot of time traveling going on that night, and at least I'm not the only one who can't remember all of it. 

At least I have an excuse.

 I have cancer.

But at least I didn't throw up in my boot.

 

 

Next year, no shots.

 

 

 

 

 

I guess pink IS my new color!

The ER had a surprise Pink Out for me last Friday night!

Everybody wore pink, or a pink something-bandana, scarf, whatever!!  It was such a nice surprise and honor!  It made me tear up when I walked in the lounge and saw all of this:

One of the Docs who planned all of this said some very nice things about me, about how I handled my cancer and worked and always had a smile on my face and made this fight look easy.  Little do they know it was all the support from my family and friends that made it easier!  Going to work on treatment was a nice break to being 'sick', and made me feel productive!  Thanks NKCH ER for all your support and this awesome night!

Last week our hospital's Pink Glove Dance video was published on Medline's site too.  I had been asked to participate, but had no idea I would be featured as much as I was!  Mind you-I had just had knee surgery 2 days prior to this video, so as you notice I'm not dancing around as much as some people-note the bum knee!
  Please go to www.pinkglovedance.com  to watch and vote for North Kansas City Hospital's video.  If we win, our donation will be given to the Jennifer Ireland Foundation.  A foundation honoring a young woman who lost her battle to colon cancer, and now the foundation in her name helps other families in financial difficulties due to cancer.

I know October is Breast Cancer awareness month, and in all the support and PINK  I have seen all over the city, the internet, everywhere this month, I have also seen the negativity about devoting a month and a color to just one form of cancer.  I get it. 
I had a second mother lose her battle to Appendical Cancer-it has no special month and color.
I have a step sister who fought Hodgkin's Lymphoma-no special month and color.
My Mother-in-Law lost her battle to Liver Cancer-no special month or color.
My brother had Thyroid Cancer-again, no special month or color.
An uncle with Testicular Cancer-again, no special month or color.
I could, unfortunately, go on and on.
And prior to my diagnosis-even having a beloved Grandmother lose her battle to breast cancer-I know I didn't own this much pink!
I wish each form of cancer had a month and a color-but more than anything I really wish we didn't have any special cancer months or colors because that ugly disease had been eradicated! 
I think all anyone hopes for is awareness about this terrible illness that takes 40,000 lives a year, not wanting to take away from anyone else's type of cancer.   Awareness that simple things like a self exam or a mammogram could save a woman's life.  It saved mine.

As you know, my cancer was found by my annual mammogram.  But many of you don't know the story behind it.
I had my annual well-woman appointment with my Ob/Gyn Dr Morgan.  Now Dr Morgan has delivered all of my children, did my D&C for one of my miscarriages and helped me through 2 others.  We're pretty close as you can imagine.  We are joking about this, that and what not-who doesn't when your feet are in the stirrups???  He then reminds me I am still 40-but almost 41, and haven't had another mammogram since my baseline at age 35.  Yep, I know.  Go see Donna-Dr Morgan's nurse for forever-and a fellow copper wife-she will make your appointment.  Idle chit chat with Donna while she is on hold with Imaging for Women.  I'm thinking about when on earth I will squeeze (pun intended) a mammo in with the way my schedule is looking for the next few months.
Brian is due to have surgery on his shoulder, I'm working for the next 6 days, Hailey has volleyball, etc. etc. etc.  In the back of my mind I've already put it off til about May.

They can get you in today-in about an hour
Sure, why not?  I drive right by there on my way home and if not today-not gonna happen for several months.

Everything happens for a reason, and we all know the results of that mammogram.
Had they not gotten me in that day, and left it to me to schedule, would I be where I am right now?  I shudder to think. 
AWARENESS.  That's all any of this pink means. 
I can't tell you since my diagnosis how many other survivors I have run into-support groups, work, in public.  And how many of those women say they found a lump-but waited months, one even a year, before getting a mammo.  I'm guessing their lives would be different now too had they been more aware.
And maybe once all these crazy pink ladies-and men-wipe Breast cancer off the face of this planet, they can go to work on another one! 

So, as you can see, Pink is my new color, and probably will be forever.  And though it's not a sisterhood I ever wanted to be a part of, I am, and will fight for a cure for it as long as I'm alive, whether it be October or pink.

Now for some kiddo updates:

Hailey went to Wichita to go to Homecoming with her new beau Jonny, looking gorgeous as ever:

 

 

Parker has been taking golf lessons and is getting very good!

 

 

 

Ethan is finally WELL (knock on wood) and went back to school this week.  He  received a Special Olympics medal AND his new CD 'RED' by the one and only Taylor Swift came in the mail. 

 He's all smiles listening to it as you can see....

 

 

 

 

And the newest baby....well, he's still pretty darn sweet that Frankie...

 

check out his tongue while sleeping on Brian's lap!!

 

 

Discharged!

By the time Brian and I were heading back to town Sunday, Dr Waldman was calling me telling me she thought the bald kid was ready to go home. Though she didn't actually call him the bald kid- she called him that sweet boy of yours.  By the time we got down there, all his paperwork was done, and his nurse was ready to pull his IV and send us on our way. Fastest discharge from The Mercy ever.

Flashback to Friday night....my sister Kate went down to be with him at the hospital, and said he was yet still possessed. If she even looked at him he screamed. All he wanted to do was lie in his bed and rock out to Taylor Swift. Good thing Dad remembered to bring his CDs.  

Then I guess sometime during the night his feeding tube came open and in the yuckiness of his stomach contents they found blood. Surgery was called to do a consult, and they felt he may have had a bleeding ulcer. Hmmmmm. Ok.  So they switched his feeds off and put him on all Pedialyte.
He got another enema, fearing he was still constipated, thus the crummy attitude.

He was weaned down to 1/2 liter of oxygen by nasal cannula on Friday night, and by Saturday night they turned it off, and he stayed above 90 on room air even while sleeping.

Because he got the dose of IVIG on Friday, he won't get his subQ dose at home until weekend after next.   Immunology felt like the parainfluenza virus was the one that hit him hard, and was worse because of his lower IgG.   They may increase his home dose this winter if we start seeing hospitalizations from these viruses.   I'd rather not wait until we have any more hospitalizations, but what do I know??

We are back on Pulmicort twice daily and his nasal spray once a day to help keep the respiratory stuff under control.  It seems to be helping, so we will stick with it!

Dr Waldman was very concerned about his heart rate. I explained that we and Dr Kaine know about his bradycardia, and it really is just Ethan's normal. However he did get down as low as 38 and hovered around 44 for a while. But during those episodes didn't appear to be in any distress, and then would recover and jump back up into the 60's.  Dr Waldman spoke with Dr Kaine himself, and he assured her this was his normal.  But, we are following up with Cardiology in December instead of January now.

The Rawleys spent Sunday night making laundry soap so we could do all our laundry, made some homemade chicken and noodles for dinner,  "bathed" the hospital funk off the baldy, and then hunkered down for our favorite Sunday night shows including the season premiere of The Walking Dead.   We love that show. And it sure helps prep us for the zombie apocalypse.

I have another follow up for my knee tomorrow, and Ethan has a discharge follow up in the Pediatric Care Center.  If all goes well, he's going back to school Wednesday, only to be off Thursday and Friday for teacher inservice days!  Oh well, it will be a short week for him!  Thank goodness Brian is off those days too!

Thanks everyone for helping us out this weekend so Brian and I could still go on our weekend 'date'.  We tried a new restaurant on Friday night-The Vinyards and it was fantastic!  As always lunch at The Avalon was wonderful and more so with our new friends the Satters.  And  Thanks Vuljes for joining us at O'Malleys!  We hope you had a good time!  And thank you to everyone who took care of our little guy this visit. He had a fabulous team and awesome nurses. One of his nurses took care of him when was admitted in March the same day I had my surgery and she remembered him. We realized that we have a friend in common, one also with a child with 18q!  Small, small world!  

Tonight we watched Katy Perry's movie, and Ethan really enjoyed it. 
The blonde singer in his life might just have some competition from a dark haired one. 
Or pink haired.
 Or blue haired. 
Whatever-he sure loved her music and we loved seeing him laugh again!  

TGIF, TGIIF and TGWHGF

Thank Goodness it's Friday-I'm assuming most if you know that one

TGIIF-or Thank Goodness it's Irish Fest-our favorite Fest!

And TGWHGF or Thank Goodness we have GREAT Family!!

Ethan had an ok night on Thursday, but by the time I got down there Friday morning, his happy personality had been overtaken by a demon.   He was not happy.  He's ready to go home.

Silver Team is the service he's on now,and Dr Waldman came in with a plan.
Immunology weighed in, and since his IgG upon admission was 762, they feel it was too low for him, and his immune system was compromised, thus the bad effects from these viruses.  He is getting a 6 hour dose of immunoglobulin as we speak- thank goodness for vascular access getting a new IV for him!

Dr Waldman was highly concerned about his heart rate only being in the 50's all day, and asked Cardiology to consult again.  Since whoever the Card on did not know Ethan, and clearly didn't read his history for the last year, they freaked and are having his Digoxin held and a level drawn. I'm guessing that will be normal since his heart rate has been in the 50's for a year now and Dr Kaine has not been worried.  It's Ethan's normal. 

Stinky got a suppository, and lived up to his nickname shortly after.

He's still on oxygen, but only 1/2 liter by nasal cannula. We thought we would try to wean that today, but once he's off for a minute, he drops to 80's.

All in all he's kind of in a holding pattern of crappiness. And I feel so bad for him. He hasn't had to do this hospital stay stuff for so long, he's forgotten how to deal with it. Not that anyone should ever have to learn, but his coping skills are far from desired. I'm sure he annoyed the heck out of everyone else this morning when he screamed at the top of his lungs for 30 minutes while I tried to wrestle him into submission.   It was like wrestling a howler monkey on crack.  He won.
I came home at 1 to get a nap since I worked last night and hadn't been to sleep.
Brian just got home , and he was sleeping soundly and comfortably, finally.

We have had plans and reservations to go to the Weston Irish Fest for months now, so thanks to my family, we are going.  People can think we are terrible parents, and they can then kiss my behind.  We are leaving him in trustworthy, capable hands and we are only a phone call and a 30 minute drive away.  Brian and I need a break together, and we are taking one.    Of course the forecast is saying thunderstorms and possible tornadic activity. Go figure.
My sister Kate is going down to sit with him tonight, my step-mom Teresa is sitting with him tomorrow, my other sister Kim is going down this weekend too, and my mom is coming to stay with Hailey and Parker.  Like I said TGWHGF!
Bring on the hot cider with schnapps and the coddle!! Slainte!

Thanks everyone for your help, thoughts and prayers!

Miserable baby

Ethan was pretty miserable Wednesday, didn't want to be held or messed with. Just wanted to lay in his bed and listen to Taylor Swift on his iPod.   He threw a good number of temper tantrums complete with biting his oxygen mask and grabbing the tubing and pulling it off his face a few times. I think he was really pissed off that he couldn't squeeze all his fingers though the little hole on the side of the mask and shove them in his mouth!

Not that I blame him in the least bit. Let's see, what did we find out yesterday???

He is, wait, was, constipated.  Good ole molasses enema took care of that.

He's still on 5 liters of 30% oxygen by face mask.

His virus panel was positive for three viruses: parainfluenza virus, rhinovirus, and enterovirus.
Sounds like the bubonic plague, right?  Nope-would only be cold-like symptoms in most people.

He got  more Vancomycin and Rocephin, and thus lost his only IV.
So Vascular Access had to be called to get him a new IV
AND he got stuck once more in his hand and finally his cute little bald head for the BNP.

I might be kinda pissed off too.

Good news?  Echo unchanged from July. BNP normal-no failure. Thus the Cardiology service punted him to Silver Team. Which we are ok with!

Bad news?  Ethan is terribly ill from minor viruses, so they are concerned his immunoglobulin dose is not enough or not working.  Easy fix?  Increase dose right?  Unfortunately we can't because his liver function tests are borderline high and increasing that med is contraindicated in that case.  So back to the drawing board with Immunology has got to happen soon.
They are going to put him on an aggressive asthma action plan to try and stay ahead of the respiratory crap this winter.

In the meantime, they have got to try and wean him off oxygen to get him home, so it will clearly be a few days before he's home.

I will update later today when we know more!

Welcoming fall, good and bad!

It's October, and that time of year again.....

Cooler weather
Sweatshirts and flannel jammies
Hot cocoa and apple cider
Weston Irish Fest
Irish car bombs and Seth drinks ( hot apple cider and cinnamon Schnapps-yum!)
Halloween
Hospital stays
And new this October- a newly licensed driver in our house!

Yep, Hailey got her license this week, and has tried to think of any and every excuse to leave the house.  I could really work that to my advantage.
 Need groceries?  Hailey. 
Need gas?  Hailey.
Need prescriptions picked up?  Hailey.
Brothers need a ride somewhere? Hailey.

We'll see how long the newness lasts at that rate!

I'm sure most of you know by now that Ethan was admitted to Children's Mercy on Tuesday evening. He's been on a slow decline for a couple of weeks now, all finally came to a head and here we are 4 Sutherland Room 5.   His sats are crappy-he was 86 on admission. They got him 92 on 5 liters of oxygen by face mask, so they tried switching him to a nasal cannula, but he kept dropping to high 70's with 5 liters.  So they went  back to a face mask, but at 8 liters couldn't keep him above 87.  Respiratory came in and decided to switch him to a different mask called a Venturi mask that delivers 40% oxygen, still on 6 liters, but hanging at 96. This mask helps tell how much oxygen he is truly requiring, as it mixes oxygen with the regular air we breathe. And I may be completely wrong on that explanation-it's how I understood it. I'm an RT, but not that kind!  Since Ethan is a mouth breather, it makes it difficult to tell how much he really is needing.

They drew blood cultures, and then gave him a dose of Rocephin and Vancomycin-antibiotics.  Transport team mentioned they were starting right off with the big guns for him!  Yeah, we can't afford to mess around.  Blood culture results won't start showing up for 12-24 hours, depending on if there is an infection brewing.

Immunology has been consulted tonight. They had no suggestions at this point, but will get involved if needed as labs come back.

X-rays of chest and abdomen were taken. No big pneumonia on the chest. So concerning for high O2 need and fever of 102.  No results on abdomen films yet.

Labs show sed rate elevated-which is an inflammatory marker indicating a process of some type going on. White count NOT elevated, so kind of confusing.

They think he is having febrile seizures, as he seems to have these funky quivers of his legs. Or they think it could  be shivering from being cold, but having a fever. His hands and feet are mottled and cold and blue.  So even with the fever they have piled on the warm blankets.

One of the nurses at CMH North knows Ethan well, and said she knew he was sick when she stuck him, and no one had to hold him down.  Only 3 sticks to get blood and an IV, and only one more for cultures.   At one point they were talking about getting access by way of IO if needed. Glad we didn't have to do that!   IO means intraosseous, where immediate access is gained by injecting directly into the bone marrow. This is obtained by putting the needle right into the leg below the knee cap. I say needle, but it's much more than a regular IV needle. Google it-it's creepy looking. And painful looking.  Again- glad we didn't have to go that route!  They are keeping him on the antibiotic doses, and he's getting his second dose of Rocephin now-which clearly burns going in by the reaction I'm getting. And he will get another dose of Vanc in the am. Hoping the little hand IV he has holds out
for these heavy duty drugs!    

The big question in the back of my mind, and I think the team's mind is the million dollar one. Is his leaking new pulmonary valve the culprit here??  This is the same crap we went through a year ago before finding out he was in heart failure and being admitted to the ICU-after 3 separate admissions just like this.  I have asked for his BNP-Brain Natriuretic Peptide to be drawn, but the residents on tonight are punting that decision to the attendings in the a.m.  Don't think I'm letting that one go. It's the one test last year that gave us a definitive answer he was in failure. On a scale of 1-10 in kids- his was markedly elevated at 3300. I don't want it to get that bad if we can help it.   

I may have to pull out the pitiful cancer card to get my way if needed. 

If not, I'll try throwing myself on the floor kicking and screaming.  

This same post will be on his carepage for those of you who check that too!  

Gotta go, sats dropping again, getting a roomful of concerned nurses.  More later. 

Sweet 16....is that really possible?

My beautiful Hailey Jayne turned 16 on Sunday!

These are the cookies our friend Michelle made her. Some are tie-dye, some are little VW bugs, some are the number 16 and some are her name.  ALL were delicious because they didn't last long around here. !Michelle also made her a yummy white cake. No, it didn't last long either! 
This is my dear friend Sarah- who was there the day Hailey was born-or I should say through the entire two days of labor and eventual c-section

We had a small family party at home, and our social bug 16 year old left us to go to Worlds of Fun Halloween Haunt with her cousin and his friend who came in town from Wichita.   Oh well, I guess I better get used to it!
We are enrolling her in a drivers class next week because having Brian and I teach her is going ok but she needs the class. I have been paying waaaay more attention to my mad driving skills since working with her, and that's about all I can say about them. Mad. And in watching others drive too I've come to the realization more people should have taken a class.  It's actually kinda scary. And scares me to send my baby out there on the road.  And it's not like we live in a small town, there will be highway driving for her almost everywhere she goes. Oh, I meant to say autobahn driving, cause I don't think anyone drives the speed limit anymore. Though I will admit some hypocrisy there, I used to be a terrible speed demon.  I've learned to slow down and appreciate the ride more, in more ways than just driving.

Parker so enjoyed playing with the marching band at Staley Friday night.   This is a pic Teresa sent me. She and my Dad went to hear him!  Said he was in step the whole time. He's being recruited for the high school band for next year, and his band teacher is talking about switching him to a different saxophone.  Can you find P?  Front row. Second from the left!

This is our newest family addition. Frankie.  He is an 8 week old English Bulldog. And yes, we are crazy and no Williams you still can't have George!



I almost forgot to mention I had my knee scope done Tuesday and  Dr Thomas cleaned up the meniscus tear nicely.  He said my arthritis is terrible and since there is no fixing that, he was surprised my other knee hadn't bothered me yet. So I'm hanging out at home with the remote, ice and pain meds for the next 24 hours. I'm supposed to get up and start walking on it tomorrow, but honestly I've been up and down our stairs three times so far. Not too bad, just a little slow.  Off work for one week, my follow up is next Tuesday, and I'm hoping to be able to go back to work that night!

As soon as they give me the green light-I'll be getting my workouts back on!  My goal is to be down 75 lbs by the Policeman's Ball 2013 the RIGHT way. Diet and exercise!  Right James?  Got it!! 


FYI I may be a cranky hot mess for the next 5 months.

 You have been warned. 

I couldn't make this s*** up if I tried!

Yep. Total drama.  All the time around here anymore.
Remember my knee injury/pain from last year?  Well, after about 2 weeks back at work, the pain was back with a vengeance.  It's not too terribly bad just walking on it, but going up or down stairs was not happening.  Since I've done anti-inflammatories, ice, icy hot like burning smelly stuff you rub on those aching body parts, rest (well, at least while I was on chemo anyway) my doctor decided it was time for an MRI.  I apparently have a torn medial meniscus, joint effusion, bony edema and osteoarthritis.

In non-medical speak: crappy knee.
I am, however, hearing that having the tear in the cartilage cleaned up is a miraculous fix, and recovery is pretty quick. Since I just managed to get my PTO hours back in the double digits, it will be nice to not have to use it all with another surgery.   I'm seeing an orthopedic surgeon on Monday the 10th, and hoping I leave there with a surgery date.

I had my "end of treatment" appointment with my fab NP Jennifer and got lots of information. My CA27-29, which is the tumor marker we will check every three months for the first two years was 40. 0-38 is normal with 0 not being any better than 38. My 40 was not surprising to them since it was drawn 4 weeks post chemo. It needs to stay in that general area, and no further testing will be done. Should it jump to say 60 they would probably order a CT or PET Scan or Bone Scan. Until then, and hopefully never, no unnecessary radiation.
 The CA27-29 is not known for being 100% accurate, as no tumor marker really is. However, since my cancer was so highly estrogen receptive, this test is very sensitive to changes in the body.  So in my case if that number does go crazy high, it's more than likely I have a recurrence.
Again-not gonna happen.  Just sharing all my new education.

My vitamin D was back within normal limits, so I just have to take a small daily dose instead of a weekly dose of a bajillion units.

My echo (ultrasound of my heart) showed my ejection fraction is now 55, whereas prior to chemo it was 60.   Again, not surprising, as the Adriamycin is known for its cardiotoxicity.  Not terrible, still within normal limits. Just have to take some Fish Oil Omega-3 and be "heart healthy" and it could improve. Not being able to walk, or do a lunge, or squat, or a push up because of my knee pain is crimping my heart healthy goals.

Also interestingly enough, all the latest trend with eating healthy by way of soy milk and products is not good for me. Since my cancer was highly estrogen receptive, I am actually supposed to avoid soy. 
Drats. And I was craving me a soy burger and soy milkshake. Never. 


Did I mention I almost ripped my pinky toe off byway of the bathroom door?  Lovely, huh?  This is the morning after I did it, two days later the bruise spread all across the base of my piggies and up my mid foot. At least I had just had a pedi. 

Oh, and my hair is growing like crazy.  My eyebrows were non existent, and then BAM one day I have a patchy unibrow. They are hard to pluck because they are baby fine. 

VvMy eyelashes kinda did the same thing. But I must say they seem to be growing back nice and thick, which I'm more than happy with 

And this was just about 3 weeks ago. 

I also walked the Race for the Cure on August 12th with lots of wonderful friends and co-workers! 
 I didn't break any records, but I did walk the whole 5K. 





Everyone else is doing ok around here.  Back in school, arguing about homework and that 20 minutes of reading is actually 20 full minutes.  Not 5 minutes. 

Parker will be playing in the pre-game band performance before Staley's home game next Friday the 14th.  He is playing the saxophone again this year, and he is excited learning the national anthem and the Staley fight song! 

Hailey is playing on a semi-competitive fall volleyball team, and her games start that night too.  She has also already signed for a competitive club team for 2013 because the coach saw her at one of her practices and liked her style.  She is also getting some private lessons to improve on some of her skills and hitting.  In just two hour-long sessions she has learned more about technique and body placement and serving than she did in the previous 3 years of club ball.  She is hitting the ball hard now, and knows how to place it.  Her hitting approach has always been a challenge, and she's doing awesome with that!  She also learned two new serves, and is consistently putting up placed serves!  We are excited for club season this year! 

Oh, and she turns *egads* 16 in 10 days...where did the time go???  And is loving learning to drive.  Let's just say Brian is much better taking her out to practice than I am, I'm kind of a nervous wreck.  But she does really well in her cute little car.  I'm going to be sad when she gets her license and I have to give it back to her.....

Ethan is back in school and doing well so far.  A few crummy days.  His allergies and asthma are really acting up with this weather.  He's had a couple days of fevers, difficulty breathing and purplish black feet.  But we saw Pulmonology a week ago and she didn't seem concerned, so we just keep plugging away.  This is a pic from Ethan's summer school teacher Ms Kristi.  He holds the American flag every morning for the pledge of allegience!  We are so proud of our little guy!!  And I love seeing these pics, because he doesn't do this stuff at home with us, so I was beginning to wonder if they were just making it up at school?!?!?

And this is him sitting unassisted for 4 whole minutes! Go Ethan!!

Please include the Robert Barenklau family in your prayers.  His family was the other recipient of the Guns-N-Hoses bike ride.  He recently learned his cancer has returned and his in his lungs. They are a very nice family, and this just sucks-cause there is no other way to say it.  Keep your chin up Robert-you can fight this and have lots of people supporting you!!