happy donna day …

Alright, Catie, you got me. I’ve been hemming and hawing all day about writing a ‘Donna Day’ post. Why should I blog about a little girl that I never, ever even met? Well, here’s 10 11 reasons why …

1. Cancer fucking sucks. It has taken too many people from my life, and I’m sick of it. If I can write a blog and drum up some more interest in this event then it is a win! Oh, and cancer fucking sucks!

2. Even though I never had the honor of meeting dear, sweet Donna, and I haven’t yet met Mary Tyler Mom, or Moms Who Drink and Swear, I love them all. I secretly stalk MTM because I feel like we have all of these crazy universe connections that may just be made up in my head, but I feel like they are real. She rawks.

3. You know I love a good cause, and an overflowing plate! I’ve already got my business I’m still trying to launch, Rockin’ 4 Robin ’12 that I should be planning, The Robin’s Nest Charitable Fund, and The Dear Robin Project! Oh, and there’s that mom and wife stuff, too!

4. I might actually be driving to Chicago to shave my head if we weren’t already planning to be Colorado bound at that time!

5. Valentine’s day is overrated. We waste A LOT of money on fake love gifts – I know my husband loves me. I mean, come on, he tries to show me just how much he loves me just about every freakin’ night! I don’t need flowers to prove that. We should take all of that carnation money and use it for pediatric cancer research. Just think of how far we’d get with those billions!

6. Here’s a thought … what if everyone that reads my stinky little blog a) shares iton their facebook page and asks their friends to read it, and b) donated their coffee money ($5) or lunch money ($10) or dinner money ($20) for one day to the Big $20k-in-a-Day St. Baldrick’s Fu that Donna’s Good Things is having at Candlelite Chicago.  BECAUSE every dollar donated by February 18th (up to $2,000) is being matched by an Angel! Let’s all to a *little* something to make this better!

7. Gold Ribbons deserve lots and lots of money. Pink ribbons have their month, let gold ribbons have the rest of the year.

8. I am blessed with mostly healthy kids. One autoimmune disorder (which I can only barely handle), so I would like to give a round of applause to the parents that live in cancerville.  You deserve that and SOOOOOO much more. I know, if I had to, I would survive, but I hope I never have to know the struggles you face daily, from watching your child suffer to fighting for your insurance benefits. I cannot. even. imagine. My heart goes out to you. I am so deeply sorry for what you are going through. I wish there was more that I could do. Let me know if I can do anything.

9.  If I wore a wore a wristband with color representing every cancer that has taken someone I love, first of all, my arm would be full, second I would be wearing EVERY color. Purple, teal, gold, pink, pearl, yellow, black …

10. CatieD, you tricked me by putting ‘For Good’ in your blog post. That was the straw that broke the camel’s back. Really? For Good? From Wicked! I’ll explain later. You got me, girl.

11. After reading Donna’s Cancer Story, how could anyone not find the time to share, or a couple of bucks to pitch in and help out Mary Tyler Family in their quest to raise $20k in a day?!?

for the happy,

kj

dear robin …

What is a robin? Just a bird? The first sign of Spring?
 A sign of renewal, an awakening of Earth alerting us of a new beginning?
It could be all of these things.

To me, a Robin is so much more than that. A Robin is power, strength, grace in the face of adversity, an amazing grin that can light up a room, a sneaky giggle, a leader, a believer, a giver, mother, wife, sister, daughter, friend, and most of all a beloved.

Now that her battle is over and she rests peacefully in Heaven, what do we do? Our struggle continues.  We miss her, and it hurts. With broken hearts, we go through the motions of each day telling ourselves “if I just keep busy, it won’t hurt so bad”.  Well, I hate to be the one to tell you, but it will still hurt. It will still hurt until you address all of those grief emotions head on, and if you don’t you will end up just like me … 6 years later, still going through the motions. Putting on a great show and using every last ounce of energy to just hold it all together.

Let’s rewind a few years …

In 2002, I had a 5 month old son and I had just moved to Evansville, 6 hours from my family in Chicago, when my dad was diagnosed with pancreatic cancer. The treatment path he chose was not the one suggested by his world-renowned physicians.  He chose quantity of life over quality.  As he sat in the doctor’s office, he was told that he had 6 months to live with out treatment and would steadily decline and die in about 6 months, but no one knew fo sure how long he would actually live – 3 months, 6, 9, 5 years?  His other choice was to receive insanely toxic (not typically toxic) chemotherapy to reduce his tumor, have a radical Whipple procedure (if the tumor shrunk), and then see what happened.  He chose the chemo.  He lived for an incredibly long time for someone with Stage 4 Pancreatic Cancer – 3 years, but he didn’t really *live*.  He spent his days in bed weakened from the constant vomiting.  My dad had never really been one to sit still, and now that’s all he did. The medications he was on, and there were many of them, wreaked havoc with his vision, so he had trouble reading – another of his favorite pastimes.  It was the most painful thing my family has ever done, watching my father die, right before our eyes. It took a toll on us. There were surgeries and procedures, and weekly trips into Chicago to see the doctors and for treatments. It wore us all out, not just my dad.

Finally, the chemo had done its job! The tumor was small enough, and it could now be removed! We couldn’t be happier! Or could we?  We were all there at the hospital that day for the incredibly long surgery.  The surgery he had that day, a modified Whipple, removed his pancreas, part of his stomach, part of his intestine, bile ducts, part of his liver, and maybe more, it was a big deal.  My mom doesn’t speak Doctor very well, and I wanted to be sure I heard everything he said, and I did. My sister fainted when she saw my dad in the ICU recovery room. “GET HER OUT OF HERE!” I commanded. God dammit! Am I the only one with a fucking brain in this family?!?  My dad had executed a DNR order and came out of surgery on a ventilator.  When he started to wake up, he realized his breathing was being assisted, and he immediately tried to rip the breathing tube out.  I had to calm him down and explain to him that it was just there to make him comfortable. He kept gesturing that he wanted to write something down. I got him a pen and paper. He was lying flat on his back, just out of a 9 hour surgery, on a vent, unable to speak, and desperately trying to tell me something.  All he could do was scribble. Then he looked at me like ‘you got it?’.  I just said to him “I’ll handle it for you, dad.”

Shortly after that, I left the hospital. We were spending the weekend with friends out in the suburbs. I took two xanax on the drive back and drank so much that night, I’m surprised that I didn’t die. The next morning, I was supposed to go back in to the city to see my dad before I headed back to Evansville, and I didn’t. I justified it by saying that he wouldn’t remember anyway.  But you know what? I do. I remember not going, and I still regret it.

After that surgery, he spent 28 days in ICU.  28 days!  For 28 days my mom would drive about 40 miles one way to sit all day with my dad.  Shortly after he came home from the hospital, he had some scans done to see that all the cancer was gone. A day we had waited for for a long time. When I heard the results, I could have SCREAMED. I think I may have.  Since his very large tumor was gone, his body had stopped fighting off the cancer. This had allowed it to pop up all over his body … lungs, liver, kidneys, stomach, intestines, you name it. All that work, all that torture, all that medicine, FOR THIS?  It wasn’t fair!  I was 30 fucking years old and my dad was going to die.  This was some serious bullshit, and I was so MAD!  He kept fighting for a few more months. 

In September of 2005, there was a special walk in Chicago for Pancreatic Cancer Research.  My dad was in the hospital this weekend.  Our whole, big extended family was there, and we Paraded for Papa Gus with pride.  We visited him in the hhospital after the walk, me, Mark, and our 2 boys.  He loved our boys. Ian had just turned 1 at this time, and he’s a red-head. My dad used to always say,”Is it OK if I call him pretty, Kel?”  You can call him anything you want, Dad. Just get better.  That procedure was the beginning of the end for my dad.  When they sent him home a few days later, it was in Hospice Care. My mom called me and said “You need to be here.” I had just seen him a week before, walking down the halls of the hospital, holding my babies, making jokes, laughing, smiling, and now he was semi-conscious lying in the living room in a hospital bed. WTF? I sat there all day and held his hand. Every once in a while he would speak up. You see, the White Sox were in the World Series that year, and every time my mom thought he was asleep, she would turn the game off and put one of her shows on. One time she put the movie ‘Ray’ on, and my dad, who 2 seconds earlier had been snoring, grunted, “Put the damn game back on. I was watching that!”  I left on Monday night.  He died Tuesday, October 4, 2005 at 8:30 PM.  Which just so happens to be my wedding anniversary. I guess he never wanted me to forget the day he died. Oh, and the Sox won the Series that year. Finally!

I have NEVER dealt with the grief of losing my dad. I just push it away, push it down, push it over, stay busy with other stuff, and I feel like shit. I will never be better if I don’t bring those feelings front and center and deal with them, address them, and put them wherever it is that they belong.  Because sitting in the back of my throat choking me is definitely not where they belong.

The reason the all the info, the TMI, the super long post, is this … when you lose someone, you have to face those feelings, like a car crash, because if you don’t your life will become a car wreck.

OK! Now to lighten things up just for a minute … in the spirit of dealing with feelings, I have launched The Dear Robin Project! Wahoo! You can read more about it in a minute, but what I want to say about it is that when I wrote about Dear Robin, I actually felt like a weight had been lifted off of my chest! A 6-year-old weight.  A weight I probably should have moved quite a while ago.

So, Robin, thanks for helping me deal with those old feelings by hitting your loss head on.  I could not have done this without you! Thank you. Thank you! THANK YOU!  I love you, and I miss you, and I can’t wait to wear tiaras with you again in Heaven!

for the happy,

the one kj

   The Dear Robin Project

On September 10, 2011, my dear friend Robin died.  She had been battling cancer of an unknown origin that impacted her ovaries, bones, and lymphatic system for over 13 months.  She had done everything in her power to rid her body of these awful cells including putting everything in God’s hands, and he did not disappoint her.  Whatever your beliefs are, they are not to be debated here.  Robin was welcomed into Heaven, into God’s open arms, where she was finally freed from her pain.  She was 33, and among the family members she left behind are her husband and her two young daughters ages 3 and almost 5.

Robin was an amazing woman, funny, smart, captivating, mother, wife, daughter, sister, … beloved.  We all have a special memory of her – maybe how we met, or the funniest story she ever told (fly in the mouth, anyone?), or one special memory that no one else would have ever noticed.  Wouldn’t it be lovely if we all got together and wrote these memories down and sent them to her?  Then they could be saved forever for her girls.  What if we put them in a book?  What if we though bigger than just our Robin?

What about the people who never met our Robin.  I bet they have a ‘Robin’ in their lives – someone important to them that died too soon.  Someone they were afraid to say goodbye to because it just hurt too badly.  Maybe their Robin was taken suddenly and there wasn’t a time for goodbye; no last hug, no peck on the cheek, no last squeeze of the hand.

What would you say to your Robin if they were here RIGHT NOW?  I love you.  Thank you.  I’m sorry.  I wish you had not suffered so much.  I would trade places with you for one more day.  Look what I’ve become!  There are many things we all wish that we could have or would have said to our Robin before their life ended.  Not all of us had the opportunity, or maybe we had the opportunity, but we were too frightened or too uncomfortable to share the things that were in our heart.  When we hold on to these thoughts with the idea of ‘I wish I would have told him/her ________’, it can weigh heavy on our hearts.  Let your hearts be lightened by giving yourself this gift of telling your Robin what is in your heart.  

I started this project at Robin’s funeral.  Many of the attendees were very young and had never experienced such a loss.  I had 1,000 cards printed with ‘Dear Robin’ on the top, and I had a sign made instructing people what to do with the cards.  I am going to take those cards along with these ‘Dear Robin’ letters and create a book.  Proceeds from the Dear Robin book will benefit The Robin’s Nest Charitable Fund, a charity started in Robin’s honor and with her help.  The charity, when fully funded, will help those on their journey to conquer cancer with smaller expenses that insurance never covers such as a missing car or mortgage payment, groceries, gas bill, or something even bigger like a trip to Disney for special memories for when dad is gone, or to fly your sister in for what just might be your very last Thanksgiving.

The bottom line is that The Dear Robin Project is all about healing and helping anyone and everyone because we all have a ‘Robin’.

If you know someone who could benefit from writing a Dear Robin letter, please share this with them. It is for everyone!

To submit your letter, or for more information about The Dear Robin Project, please contact Kelly Johnson at DearRobinLetters@gmail.com. I’m sure there is some sort of legal form that should accompany this that says you are giving me permission to use your letter in my book, but I don’t have that yet, so, until we get that waiver ready, please add a separate paragraph after your letter that says that Kelly Johnson and the Dear Robin Project can use your letter for publication.  Thank you for participating, and I hope you find some peace when you write your letter!

happy to be an ibex …

A paradigm shift. After you get that call you may have a paradigm shift. Big or small, but something shifts.

“Hello, ma’am? This is Dennis with SPOT Rescue Services. We just received a 911 alert from Mark Johnson’s SPOT locator.”

“Are you shitting me?”

“No, ma’am. We don’t joke about these things. Do you know where your husband is?”

“Apparently stuck on the side of a mountain somewhere with his dumbass friends, but you know exactly where he is, don’t you?”

I knew he knew this because a SPOT is a GPS locator/Messenger system that adventurers carry as an extra measure of protection in case of emergency. It has 3 buttons. The first one, when pushed, sends a message to everyone you choose that says “We’re OK, this is where we are … ” then you click on it and a map pops up and it’s all cheery and fun. For the second button, you can program in your own message. Our message is “No Emergency. Send Help.” Looking back, this message is just dumb. If you don’t have an emergency, why the hell do you need help?

The third button, the 911 button, when pushed, activates a series of very interesting events.  It sends a signal to the SPOT Rescue Service Center in Montgomery, Texas (where some amazing and calm men and women work).  Those people then work on calling your emergency contacts that you have entered into their website.  After speaking with your contacts, they call the local authorities, and begin formulating a plan on how to rescue the button pusher.

So, on July 14th, 2011, at 7:15 Colorado time, after much debate, Team Ibex pushed the button.  After speaking with SPOT, I had the extreme pleasure of speaking with a 12 year old sheriff from Chaffee County Colorado. I hope to God I never encounter this man-cub in real life. I know he was ‘just doin’ his job’ by using the last precious hours of daylight searching FOR THE VAN, but we did have GPS coordinates for exactly where the guys were located. Duh. Onward. After asking SPOT to take him off my hands, he was no longer my problem.  Along with my Father-in-Law, we tried to launch a rescue that night, but it just wasn’t in the cards. It wasn’t fair to ask what would turn out to be 18 men to risk their lives to start a rescue at night. We would have to wait until morning. 

My greatest concern was that someone was ill. I mean truly ill, like heart attack ill. In my wildest dreams I couldn’t see this being a terrain issue or a twisted ankle, something that seemed like a minor obstacle to them. I mean a twisted ankle to them would be like a game! “Let’s rig something up and haul him outta here!” is what I could see in my mind. As far as terrain was concerned … they had more than one mountaineering guide with them. But the SPOT is a one way device, and we would have to wait to learn that they were just ‘cliffed out’, a new term for most of us. Basically, they went hiking and ended up in a mountain climbing situation – with no gear.  So, at this time, there were 9 men on the side of Mt. Princeton in Colorado waiting for help and wondering if anyone had heard their ‘call’. There were 9 wives at home and only 1 knew what was happening.

That was the night of the big Harry Potter Premier, and several of us wives were chatting via FB and text while this was all happening. I was in Florida with my boys, and I couldn’t. wouldn’t. didn’t dare say a thing. I really didn’t know anything. What good would it do to have 9 of us scared to death? So I waited. With my cell phone in hand during the entire midnight showing of Harry Potter 7 Part 2, 2,062 miles away from my husband on the side of that mountain. I sat in an aisle seat waiting to hear from SPOT.  What was the final word? Was the State of Colorado willing to fly over with a helicopter and drop a radio down to them just so we could know if everyone was ok?  SERIOUSLY?!? Who. Lives. Like. This?  Sure, Honey, I’ll get you some more popcorn. (!)

Movie ends, run out of theater, get on phone “Any news?” “No. No helicopter.” Sad face. “Ok, I’ll talk to you in a couple hours. Thanks for all you’ve done.” It’s now been about 6 hours since SPOT called me. I’m just tuckered and know I have a big day coming up, yet I can’t sleep. Imagine that.

I squeeze in a couple zzz’s and am up at the crack of dawn.  I’m right on the phone with SPOT and the Search and Rescue Coordinator (SAR) and I now know that the SAR team will be heading out in waves. Sentries to find the guys, followed by medical team to make sure everyone is OK, and then the rest of the extraction team, 18 guys in all. The rescue is going to take ALL DAY. I’m not sure if I’m going to make it all day, and I’m not on the mountain. The saving grace was that my in-laws were also traveling in Colorado and were on-site for the rescue. Every once in a while, my FIL would find cell reception and call with an update. It was a VERY long day.

After I had a good handle on what was happening, I had to call the wives of those 9 men. Not an easy task. Some of them were not to pleased that I had not told them the night before – even though I had talked to them about other things. One of them was packed and ready to leave in the 3 minutes we were on the phone! It was a long day for all of them too, and I think now, they are thankful I spared them the extra 12 hours of worrying. We were tough together and are better friends for what we made it through that day. We are Ibex … tough, resilient, quick thinking, strong.

At one point, I spoke to the SAR Commander. A very accomplished military veteran. A hard ass. An old timer. I was asking how the rescue was going to be executed. “Ma’am, once everyone has been cleared as healthy, we will hike them out to the top of the falls. Then everyone will be harnessed in and they will rappel the falls (Agnes Vaille Falls – 300 feet tall) one pitch (rope length) at a time until everyone is safely down. Then they’ll hike out, get debriefed (insert underwear joke here!), and be released.”  My reply was, “Hmmm. So, this rappelling the falls, is this kind of like when your kids act like assholes all day and you reward them by taking them out for ice cream right before bed?”  After a VERY long pause, this extremely serious man in an extremely serious situation giggled and said to me, “Well ma’am, it just might be.”

After all 9 Ibex were safely off the mountain, my FIL called me “They’re down! But you won’t hear from them for a while because they are waiting for all of the rescuers to make it safely down too.” That was the longest part of the day. And the nicest thing anyone has ever done for the Search and Rescue Team. The rescuers could not believe that these guys had waited to make sure that THEY were safe. Of all the rescues they had ever performed, no one had ever waited on them. Ever. Our husbands maybe goofy, and frustrate us at times, but just like our kids, they have manners, dammit! It made me proud to know that in the midst of exhaustion and dehydration and hunger (although none of them are really in danger of starving to death in a day ;) ), they waited.  A girl might have hugged at this point and said “Friends forever!” They probably just shook hands and did that manly head nod thingy. Friends forever.

So many people ask me why I ‘let’ my husband(the one on the right) go to Colorado. Uh, what?  Don’t you let your husband go fishing? You do know his drunk ass could fall off the boat and drown, right? So many people ask me if I will ‘let’ my husband go back to Colorado. YES! In a heartbeat! It is the one place on earth that he and his friends can unwind. They have stressful lives! They need a break! Lay off! So they got stuck on a mountain and had to be rescued. At least they were smart enough to carry a SPOT and be able to be rescued! Besides, if they hadn’t gotten stuck or been rescued, then we wouldn’t have been able to throw a kick ass party and raise a bunch of money to donate back to the SAR team that rescued them!  Plus, now we can differentiate this trip from all the other ones they will be taking over the years to come!

One little random thought … The SPOT is orange, and Mark has this old, orange Patagonia jacket that he just can’t get rid of because he bought it on the day of our first date.  We laugh every time he talks about donating it. It’s never gonna happen.  So, it was just ironic to me that so many people wore orange to the party on saturday night.  If you were there, you probably didn’t notice, but I did.  Things that make you go hmmm.

July 14-15th were tough days for Team Ibex, and because of that we think a little differently now at Casa Johnson. It has been happening slowly. We actually evaluate how important things are to us … friends, financial stuff, clothing, extraneous purchases, etc. Is it good for the end result? Does it feel better if we do A or B? Summer sucked for me, but I can feel fall in the air, and we both LOVE fall. It’s when we fell in love. It’s when we got married.  To fall in love in fall is so wonderful because you get fall every year. If you fall in love at a concert, you might not ever get that again, but we get fall every year! And it makes me happy every year!

for the happy,

the one kj

 

Chaffee County SAR, This Bud’s for You!Team Ibex!