Thursday January 31, 2013

Another good night for the Shannon O'Hara Foundation.  We attended the Rochester Century High School girl's hockey game and received a $500 donation from their Blue Line Club.  We saw lots of familiar faces on the ice and in the crowd, and we still love being around the rink.  Thanks to the Panthers and their parents for supporting our cause.

Two weeks from tonight we will give out our first scholarships.  So cool.

Tuesday January 29, 2013

Each day as I lie on that table and receive radiation, I can't help but think about Shannon.  The techs instruct you that to make things go smoothly, you should try and relax.  I find myself wondering how a 12 year old girl was able to do that.

What did she think about each day?  Her homework?  Golf practice?  Her friends?  Boys?  The radiation zapping her brain?  The tumor that would take her life?  I never asked her where her mind went during those 30 days.

So, the way I relax each day for treatment is by spending that time with Shannon.  At least inside my mind, I spend that 20 minutes with my girl.  7 down, 23 to go...

I spent a lot of time today updating the blog site and the foundation website, and that brought lots of Shannon memories, too.  Check out the foundation website when you get a chance as I've added several pages.  One page includes the links to the news stories about Shannon and her legacy.

I couldn't help myself - I watched the KTTC Med City piece again just to hear her voice.  The book title came from her interview that day - wanting to make a difference, Determined to Matter.

There has been a lot of work on the book lately as well.  Scarletta Press is sending it out to reviewers this week, and we are putting together some book launch/book signing events.  Erin and Dan suggested that I probably need to buy some nicer clothes.  I guess they don't think I can wear sweats or mom jeans to these events.  It's still kind of surreal and I still can't quite believe it is happening.

A family member summed it up for me this week.  He was talking about doing something that's out of your comfort zone, something that's a push for you.  He called it a "Shannon thing."  Yes, thinking that I could write a book was a "Shannon thing" for me.  And now talking about it and reading from it for audiences will be another "Shannon thing."

But that's what she knew how to do.  At such a young age, she knew how to seize opportunities and try something new.  She didn't care that everyone else had been playing hockey for years.  She pushed herself and tried something new and it became this incredible part of her life.  That's living.  That's why she loved life, because she saw the possibilities.

As I continue to grieve and cope, that's what I am trying to do, too.  To push myself.  To live life and enjoy it.  So, tomorrow when I'm lying on that table, I'll spend a little time with Shannon, and tell her all about it.

Sunday January 27, 2013

The Shannon Fund is $2600 richer after the first full weekend of Shannon Cup 2013. Incredible.

We fully funded another scholarship selling Shannon stuff during the 14A and 14B Rochester girls' hockey tournaments with just twelve teams filling the brackets.  Next weekend, 26 teams will converge on Graham Arena as 10 and 12 year old girls compete for the Shannon Cup.  We better get another shirt order in ASAP.

Impossible to thank all the volunteers.  You know who you are.  You insisted on handling EVERYTHING and for that Jen and Erin and I are forever grateful.  Next weekend a whole new volunteer list will take shifts behind our Shannon O'Hara Foundation merchandise table.

By the way Girls - Jen O noticed the addition of pink hockey tape on your sticks to go with the lime green for your favorite #9.  Pretty sweet.

We spent a lot of time around the rink this weekend trying to support the Rochester teams and watch as many games we could of The Cannons and The Vipers.  Those are Shannon's buddies and classmates.  Some tears but more laughs as some good Shannon tales were relived.

One of the 14A teams was from Hopkins and it didn't take them long to figure out the Shannon Cup was for the Rochester girl who played on a team that won the Hopkins tournament in November of 2011.  They have a better understanding today why their stands were packed with so many Rochester supporters.  They all bought Shannon cup shirts.

And in between trips to the hockey rink, we drove Erin up to Coon Rapids where the Spartan 7th graders competed in a two-day basketball tournament.  Saturday night was spent with kids running roughshod over a Country Inn & Suites in a Twin Cities suburb.  A table for 24 at Buffalo Wild Wings and lots of laughs at a team dinner.  All about Erin and her friends - our friends.

Jen, Erin and I talked in the dark in our hotel room as we settled in for sleep.  While it will never be the same again, this family of three is having fun and living large.  There's a whole community out there that won't let us forget how much we are loved.  God bless.  That update is all we're capable of tonight :)

Thursday January 24, 2013

It's another chill-you-to-the-bone kind of day here in Rochester.  With my treatment schedule, I am forced to leave the house at least once each day, otherwise I might be tempted to stay home, in my fleece pj's, under the covers. 

I have had my first four radiation treatments and, while the first two days were a little rocky due to scheduling issues, the last two days have been quite routine.  Routine is good.  From here on out my treatments are scheduled for first thing in the morning, which is perfect.   I want to go there, get in, get out, get on with my day. 

Dr. Laack met with me yesterday and showed me what my radiation plan looks like on the computer.  Amazing how they work a plan to attack the affected tissue while keeping the vital organs out of the way.  She showed me the razor thin margins they are dealing with and how they have to come at it from a sharp, low angle on my left side to keep my heart out of the radiation field.  Better to radiate a little back fat than to radiate my heart...

In all seriousness, this is going to be fine.  I'm going to get through it.  For Erin's sake, I want to make it not such a big deal.   Erin sat in the waiting room at Desk R with me a couple of times this week.  Monday she and Dan were both there, but Tuesday it was just me and Erin.  She waited patiently that day, and when I finished she said, "It's kind of freaky to think that everyone in that room has been touched by cancer.  I wonder how many of them have been touched twice?"  By age 11, two of the three people she loves the most have been diagnosed with cancer.  God, I wish I could take away her pain and her worry.

But, all I can do is continue to reassure her that I plan to stick around.  Yes, I am going to the same place as Shannon went for radiation and that makes it seem similar, but my cancer is very treatable and longevity is expected.  Women are diagnosed with this all the time, and they carry on with their lives after a little bump in the road.  That's my plan, too. 

Hopefully the end of the semester today and a no school day tomorrow will give Erin a little boost.  Add to that a busy weekend that includes a basketball tournament and a night in a hotel with her teammates, and I think we're in for a good couple of days.

We also are gearing up for the Shannon Cup hockey tournaments this weekend and next.  We are again leaning on our hockey mom friends to volunteer and fundraise for us, and we're so grateful for their help and support.  When we can, the three of us will be on hand to watch the Rochester teams play.

The Rochester Post Bulletin did a nice write up today about the Shannon Cup and the Shannon O'Hara Foundation.  For those of you who aren't local, you can check it out here:  

Monday January 21, 2013

As I write, Erin and her friend Emily are spending this MLK Day afternoon studying for their upcoming tests this week.  Although, judging from the amount of giggling going on, I'm not sure how productive this study session is!

But, it's good to hear Erin giggle.  She really has such good friends and teammates.  Those basketball teammates are showing how much they care about Smiley by sporting some new colors.  Each girl on the 7th grade Spartan squad is now wearing one green sock and shoelace in memory of Shannon, and one pink sock and shoelace in support of me.

I begin my radiation treatments today, and the six weeks of treatment will take us right through the basketball season.  I will finish treatment on March 1st, and our basketball team will finish it's season at the youth state tournament on March 2nd & 3rd.

These girls and their families have been there with Erin, and us, through all of it.  We can feel the love, and now we have a colorful reminder of their support.

Friday January 18, 2013

It has been a week filled with lots of Shannon moments for all of us.  Funny how that goes.

Some of it is to be expected as the scholarship applications are now in and ready to be reviewed by our Board of Directors.  It will be fun to read the essays and hear about what hockey has meant to each of these kids.  It makes me think about the kind of essay Shannon would have written, and that makes me smile.

The other Shannon moments just happened out of the blue, and we each found ourselves having to deal with feelings and emotions on the fly.

Erin got stuck in the middle of a classroom discussion about fighting with your siblings, and that left her feeling lonely.  She'd give anything for a good fight with Shannon right now.

Also this week, Dan and I each had instances of the dreaded "small talk" where we had to decide whether or not to share our story.

Dan did, I didn't.

Dan was making contact with a new potential customer and, while getting to know her, found out her kid plays hockey.  Not only plays hockey, but plays hockey in Waseca.  Waseca is the sight of the last goal Shannon ever scored.  So, Dan shared his story.  This woman was empathetic, and Dan left feeling good about the exchange, good about remembering Shannon.

My small talk moment came while sitting at the piano studio, waiting for Erin to finish her lesson, and found myself listening to a mother and daughter banter back and forth about entering high school next year.  After one smart ass remark from the girl, I chuckled a bit.  The other mom said "Look, you even made that lady laugh with your attitude.  She must have a 14 year old."  I could feel my stomach tighten as the woman turned to me and asked, "Do you?"  I just said, "No, my daughter's eleven, but I know the teenage type."

I left feeling guilty for not acknowledging Shannon.  But, in a quiet piano studio, how do you explain to a stranger that, well, you see, I should have a 14 year old, but, well, she died before she got to go to high school.  So, I said nothing about Shannon, and now this woman thinks I am the mother of only one child.  Wrong...

I guess we all realize that these instances will continue to happen in our lives.  It doesn't matter if it's been a year or ten years, we will always have to decide where and when to share our story.

On a happier note, there's a subtle Shannon tribute is taking place this weekend.  It's Hockey Day Minnesota tomorrow, and the outdoor high school hockey games will take place on Lake Pokegama in Grand Rapids - a really cool venue in a great hockey town.

If you watch the games on TV, just below the flag pole on the goal line, you might see a number 9 painted on the boards.  Thanks, Uncle Jeff...


Sunday January 13, 2013

We have reached the end of another weekend.  Things are fine, my mouth is slowly healing, and, tonight, I feel like writing about Miss Erin. 

We spent the day watching her play basketball and socialize with her friends.  She still lights up our world, and it appears from watching her that she brings happiness to others, too.  Even through her struggles, she inspires us.

Erin is figuring out that, this is it.  This is our life and it's up to us to make the best of it.  If you want to be happy, figure out what makes you happy, and then do it.  Sounds pretty simple, right?  But if Erin can come to terms with that at age 11, she's way ahead of the game.

Erin knows more about the world than I wish she did.  As we've said more than once, she's been through more than any 11 year old should have to endure.  But, you don't get to choose what happens to you, you only get to choose how you react to it.  Erin is learning that, too.  

This is not to diminish the pain of loss she still feels, because it's still present.  It always will be.  But, Erin is coming to accept that, too.  She doesn't want to forget, but she doesn't want to be stuck, either.  So, she's working on it. And we're pretty damn proud of her.  

We continue to find our rhythm as a threesome.  Erin has wanted to hang with Dan and I more lately, and that's been really nice.  Whether it's watching football or the Golden Globes, it's good to be together.  

Tonight I am grateful for Erin.

Thursday January 10, 2012

Shannon's funeral was a year ago today.  One final milestone in our year of firsts.  I can still picture all those kids sitting around the altar and paying their last respects to Shannon.  Looking those kids in the eye as they passed by us and shook our hands inspired us.  We didn't see that coming, and in the aftermath, Dan and I became determined to try and do something to honor Shannon's spirit and continue to connect with kids like those who attended the service that day.

From that inspiration came the idea of the memorial scholarship and, eventually, we started to dream bigger and progressed to creating the foundation in Shannon's memory.

This week has brought the first fruits of that labor.  I have been fielding phone calls and emails as seniors are turning in their scholarship applications.  Each time I go to the mailbox and find another application, it warms my heart.  In the next few weeks, our board of directors will review these applications along with the essays and letters of recommendation.  It will be an exciting day for us when we get to present the checks to our scholarship recipients.  Making something good come from a terrible loss has been our goal, and it will be satisfying to see it come to pass.

I have had two whole days without a doctor's appointment, but my streak ends tomorrow.  I am headed back to oral surgery to finally begin the process of replacing the teeth I loss during last summer's bone infection fiasco.  As an aside, I hope you readers don't think I have Munchausen Syndrome.  I swear, all my ailments are legit.  Also, isn't it a good thing we named this blog "O'Hara Family Blog" since lately it's been all about Jen?!?!  I guess I should have confidence that if you're still reading this, you still care.

Tomorrow I will get three posts put into my gums where the three teeth were removed.  Then those posts have to heal for 3 months or so before I actually get teeth implants placed.  So, it's good I can get this done now and it can heal while I'm going through my radiation.

Hopefully by June 1st I am done with all my appointments, I have new teeth, and I can go a few months without any medical needs.  It's good to have goals...

As for the other members of this family, their lives are more routine than mine!  Erin has two weeks left in the first semester of school.  Second semester she will start a couple of different classes, so that will shake things up a bit.  Basketball is a four day a week commitment right now, and we will be off to another one day tournament this Sunday.

Dan is on the road three weeks in a row here to start the new year.  Even with all his traveling, he has had enough flexibility to be around when I needed him to be.  He was able to attend my consultation appointments for my DCIS treatment, and he'll be here tomorrow when I have yet another oral surgery procedure.  I am grateful for that.

So onward we go, into the second year.  I continue to read about loss and write about our journey and I feel proud that, through it all, we've managed to laugh, to cry, to feel.  I hope this next year brings us a little less pain, and a little more acceptance.

Loss is our legacy.  Insight is our gift.  Memory is our guide. - Hope Edelman

1/9/2013 - Happy Birthday, Papa Harkins!

Happy 70th Birthday to my Dad.  Aging in years, but still young at heart.

Erin, Papa & Shannon - Christmas 2001

Tuesday January 8, 2013

In some ways the "New Year" for this family started on January 7th.  I don't know if it will always feel that way, but it definitely did this year.  We completed a year without Shannon.  All those calendar dates that carry some importance, well, we've navigated them the first time around.  Check.

Now, I don't mean to say that year two will be easier, because living days and weeks and months without her will always be hard, and the pain and feeling of loss will ebb and flow.  But, as the rhythm of the new year reveals itself, we will know that at least, that we have covered this ground once before.

Speaking of ground we've covered before, today was my radiation simulation and planning appointment to prepare for my treatment.  It brought me back to the day they made Shannon's "smile mask".  (If you are relatively new to this blog, go back and read the entry from April 21, 2011 for more info.)

Thankfully, for breast radiation they don't have to make mold or imprint of the body part in question.  But you do have to lay there, topless, for an hour or so as they figure out the radiation field and positioning needed to effectively and safely radiate.  As an aside, I just have to comment here - more people have seen and touched my breast in the last 18 days than in the first 43 years of my life combined!  I am a pretty modest person who you'll find most days in a sweatshirt and mom jeans, so this puts me way out of my comfort zone.

Keeping with that theme, Dan and I had a good chuckle about the body parts I've had worked on over the past year.  If I could name three places I wouldn't want to have procedures done, well, I pretty much nailed it:  One ovary, three teeth, and now this.  I hope the next time I need medical attention, it involves something less intimate like an outer extremity...

So, back to today.  My planning session involved positioning and CT scans to see where my organs are located so they can be avoided when the radiation is being given.  Today also involved learning to do the "breath-hold" technique - a breathing method that I will use each day during radiation.  A physicist was involved in the planning today, running a program to figure out how deep a breath I need to take and hold to keep my heart away from the radiation field.  The physicist monitored my breathing for a period of time today, and figured out the ideal deep breath range to pull my heart back away from the chest wall.  Then, on a little monitor I watch through these special goggles, I can see my breathing monitor go up and down and then they give me a cue to "Hold Your Breath When You Are Ready" Then, I need to breathe deep enough to get my monitor into the "green range" and hold my breath while the radiation is given.  Then, when the radiation beam stops, the little monitor will say "Breathe Normally."  This is how we will do it each day for radiation.  It took some practice, but I was feeling pretty comfortable with it by the end.  The last step was to get my tattoos - four little ink dots that will help them line me up each day for radiation.  Dr. Laack, the dosimetrist and the physicist will now finalize the plan to radiate the field as effectively as possible while avoid the surrounding tissue and internal organs, and then we are ready to go.

If you look at it objectively, it's fascinating stuff.  If I think about what it really means and why I am there holding my breath, it could freak me out.

I am set to begin on January 21st.  I need to remember to take it one day at a time and not think about the fact I have to go do that five days a week for six weeks.

But, I have perspective.  It's pretty hard for me as a well adjusted (in my opinion) 43-year-old woman to bitch and moan about going through something that I watched a 12-year-old girl handle with fortitude and grace.

I know I will get through this.  I had a pretty good role model show me how it's done...

January 6, 2013

January Sixth will always be this family's D-Day.  I'm not sure how we will commemorate it going forward, but today was spent with family, friends and fellow parishioners celebrating 9:30 mass at St. John the Evangelist.  And it just felt right.

Fr. Mahon acknowledged the anniversary and Jen's breast cancer diagnosis but also thoughtfully spoke of other parish families experiencing challenges and triumphs. Jen, Erin and I were proud - once again - to present the gifts for consecration.  Fr. Mahon was sensitive to sharing too much information about us at a public mass but we write a blog that is closing in on a million page views and don't really have too many closely held family secrets.  So why not?

After a quick brunch together with family , Jen, Erin and I said our goodbyes and came home to chill together.  Just the nuclear fam.  Some NFL playoff football, some Food Channel Celebrity Cook Off and some time together.  Lovely.  Comfortable and fun.

And while Jen and I have chosen to journal quite publicly over the past 21 months, Ms. Erin has mostly been private with her thoughts and grieving.  That is until today when she offered the following to her Facebook friends - and today Erin Irene O'Hara posts for all of us:

"One year ago you went to heaven. One year ago we realized how much we would miss you. One year ago you lost your hardest battle. Everyday you are somehow remembered. We still go to the rinks and see your friends fighting like you used to. We would all give everything to have you back over there. I remember going out and playing in the snow. Our sledding and snowmen. You were my best friend and I was yours. I miss hearing you yell at the vikings on tv. I miss watching you play hockey. I miss us making fun of each other. I miss the late nights watching disney. I miss us fighting like normal sisters. I miss watching good luck charlie together. I miss never being bored with you. I miss your imagination. But most of all, I miss you. I love you Shannon Anne O'Hara. You were our left wing, 4 10" fighter. ♥"

Friday January 4, 2013

Yesterday was a day of information overload as Dan and I sat through three appointments that helped us understand DCIS, what it means now, and what it means going forward.  We also gathered information about all possible treatment options, and made our choices that will chart the course ahead.

While the expected outcome is completely different, there were some eery similarities to those early days after diagnosis with Shannon, when we bounced from appointment to appointment, our heads spinning with thoughts and feelings and information.

After weighing my options, the course of treatment I've chosen going forward is to follow the lumpectomy I've already had with radiation therapy for 6 weeks.  It's a numbers game, and I want to do what I can to reduce the risk of recurrence.  I'm young - by breast cancer standards - so radiation therapy (RT) is a way of choosing to be proactive with prevention.  To me, that outweighs the risks of RT.  So that's that.  When I will start treatment is yet to be pinpointed exactly, but hopefully by the end of January.

I feel comfortable with the choice I've made, and I will fire up to endure the daily trips to Desk R at Mayo Clinic.  I warned Dr. Laack and the staff there that they shouldn't expect me to be as cheery as Shannon was on a daily basis!

It was good to see Dr. Laack and we talked at length about Shannon.  We actually talked with Dr. Pruthi about Shannon as well.  Both these women have sons who play tennis and hockey and it's one of the things we love about this town - you often find yourself in a giant venn diagram of overlapping circles.  Familiarity can bring compassion and I feel I am in very good hands.  And both these women kick ass at their jobs, too.  That doesn't hurt my comfort level, either.

So, that's the short version of the four hours we spent at the WFMC yesterday.

Now, we've reached another Friday - the 52nd Friday in life without Shannon.  We will stay busy tomorrow with a basketball tournament all day and a Vikings/Packers playoff game to watch at night.

Sunday, on the 6th of January, we will attend mass at St. John's at 9:30 am to mark the anniversary date.  We've almost done it, navigating the first year.  Honoring and remembering her, living in the moment as best we can, and peeking ahead when it feels right.

Wednesday January 2, 2013

Today was back to the routine.  After 11 days of sleeping in, Erin was none to eager to hop on that bus at 6:45am.  But she did it.

Dan had it worse, having to leave on New Year's Day to be in position in Milwaukee for early morning meetings today.  Off and running again, same as it ever was.

I spent my time healing, resting, and thinking.

Tomorrow I will have appointments with Dr. Pruthi in the breast clinic, my surgeon, Dr. Boughey, and a radiation consult with Dr. Laack.  Yes, Shannon's radiation oncologist, Dr. Laack.  This is my choice to see her - I trust her, and there is a comfort level already established.  That outweighs the painful memories for me.  No question.

So, more information will be gathered tomorrow.  Knowledge is power.

Erin was not wanting to do her homework this afternoon, and she looked at me and said, "Why does our life suck so much?"  Ouch.  And, by the way, Erin says suck whenever she wants to these days!

But, much like getting on the school bus, Erin managed to do her homework as well.  Then it was off to piano and, with the Christmas carols behind us, time to pick a new song to master.

Erin chose "Tomorrow" from the musical, Annie.  Girl after my own heart.  She came home and immediately started practicing it.  Today ended better than it started.

When you are singing Broadway show tunes, life doesn't suck.

When I'm stuck with a day 
that's gray 
and lonely 
I just stick out my chin 
and grin 
and say
The sun will come out