The Big C

Well, no reason to beat around the bush - the call from my surgeon today confirmed that I have DCIS, ductal carcinoma in situ, which means cancerous cells were present inside the milk duct.  In situ means "in it's place" which explains that the cancer is contained and not invasive.  This is good.  This is the earliest form of breast cancer, and the most treatable.  If you're going to get breast cancer, this is the one to get!

I joke, but of course, we are all a bit rattled.

The standard course of treatment for this type of cancer is a lumpectomy, which I've already had, plus radiation therapy.  There are some choices to be made, and things to discuss with the doctors, which will happen later this week or early next week.  If radiation is done, it won't start for a few weeks to give the surgical site a chance to heal.

So, that's what we know at this point.

OK, can 2012 end already?  PLEASE?!?!

Happy New Year, everyone.

The waiting game...

Dan and I are up and enjoying a really good cup of coffee on this clear and cold Sunday morning.  My recovery is going smoothly. It's now two days post-op, and I feel better today than I did yesterday, so we're heading in the right direction.  I may even try to wean off the narcotic pain meds today and see if extra strength Tylenol can do the trick.  (Yes, I have an ulterior motive - no alcohol while on narcotics, and I just might need a glass of Chardonnay tonight :)

So, we play the waiting game today and tomorrow until the phone rings.  Dr. Boughey will call as soon as she receives the final pathology report.  We did speak with Dr. Boughey while I was in the recovery room just after surgery, so we gathered a little bit more information on Friday.

Unfortunately, the best case scenario has been ruled out.  The hope was that no more atypical cells would be present in the lumpectomy area, and that would be the extent of the treatment needed.  That's not the case.

They do some preliminary pathology right there in the operating room, and Dr. Boughey explained that those results showed more atypia was present in the area.  Now pathology is doing their extended testing on the tissue, and those are the results that we receive tomorrow.  In simple terms, tomorrow we will hear that this is "almost cancer" but hasn't quite reached that stage, or we will hear that this is DCIS, early stage breast cancer.  Either way, there will be some treatment necessary, but there are still a lot of unknowns for us at this point.  So we wait.

We will try to occupy our minds today by watching the last regular season NFL games.  If the Vikings can beat the Packers, they get into the playoffs.  That makes me think of Shannon and how amped up she'd be for today's game.  She loved watching the Vikes, and she loved hating the Packers!

A year ago today, a hospital bed was delivered to our home.  Shannon was hanging on longer than we anticipated, and it became difficult to keep her comfortable on our regular furniture.  So, we had to do something we didn't want to do, and put her in a hospital bed.  As much as she never wanted to be in a hospital bed, it was absolutely the right decision and it allowed us to keep her comfortable during the final week of her life.

Despite everything else going on for us right now, we are still reminiscing about where we were at a year ago.  There are so many little moments in time from those last days of Shannon's life that will stay with us forever.  Late nights spent holding her hand and talking to her so she knew we were there, and so she knew it was ok to let go.

The best part of today will come this evening - my friend Teri is driving 9 hours from her home in Michigan to spend a couple of days with me.  I haven't seen her since January 10th.  We said goodbye the night of Shannon's funeral, and we just haven't managed to see each other since then.  Her arrival will be a real day brightener.  Girlfriends make the world a better place...

Jen is recovering

Jen is home and resting.  Her lumpectomy went well.  The surgeon - Dr. Judy Boughey - achieved clean margins.

However, pathology is inconclusive so we will wait the weekend to hear.  Dr. Boughey said her pathology team was hedging.  Too close to call for how to classify the affected tissues that were removed Friday morning at Methodist Hospital WFMC.

Care levels continue to be excellent.  Her surgery started at 10:15... she was in recovery at 12:45...released a few minutes after 2:00.  And now home watching Ellen in bed with pain meds to help her doze.

Erin gave her mom the eyeball test - deemed her healthy enough and headed out the door for another sleepover.  That kid can cope.

Thursday December 27, 2012

We've written here before about feeling some obligation with this blog.  We know people care, and those of you who have been along on our journey have brought us so much love and support.  It is truly amazing.

But, sometimes something happens in our lives, and we don't know how to share it with you all.  This latest one is almost too much to take.

Quickly let me backtrack - we had a wonderful Christmas Day surrounded by our family.  Just as we had hoped, it was filled with laughter and tears and stories about Shannon. Unfortunately, Dan, Erin, and I were dealing with some anxiety brought on by events earlier in the week.

On Friday, December 21st, I had my yearly, routine mammogram.  I've done it every year since turning 40, and it's always been completely normal.

Not this time.

I was told to call back and make an appointment for further imaging.  With the help of friends who have friends who work in breast imaging, I was expedited and got in first thing on Monday morning.  Christmas Eve.  The hope was that further diagnostic mammogram would show the calcification spots that had showed up on the initial mammogram would be benign and I would be sent on my way, see you next year.

But no.

The diagnostic imaging was indeterminate which meant the next step was a needle biopsy to remove these spots and see if we could determine them to be benign.  So, on Christmas Eve, I had a needle biopsy with the hopes that the results we would receive on Wednesday (12/26) would prove to be benign.

No such luck.

Pathology's findings are that these spots are "severe atypical ductal hyperplasia", which is considered a precancerous condition.  But, such a small sample is taken during a needle biopsy, that they can't completely rule out the possibility that this hasn't crossed over into the early stages of cancer, called DCIS (Ductal Carcinoma In Situ).  In order to determine this, surgery will be performed to remove this area where these calcifications were, and check those surrounding tissues to see what is happening with the cells.  

Now, understand, these calcification "spots" are an absolutely tiny, tiny grouping.  The radiologist who read my initial scan was on top of his or her game that day.  There has been much discussion recently about whether women in their 40's need yearly mammograms.  Here's an example when it worked to my advantage.  Whatever this ends up being, it was caught at a very early stage.

So tomorrow morning I will have a lumpectomy done as outpatient surgery.  We will get preliminary findings tomorrow, but will not receive final pathology until Monday.  Another weekend of waiting for results.  Ugh...

The results will show us one of three things:  Best case scenario is that the surgery shows no residual atypia and the only ongoing treatment may be the need to take Tamoxifen (a cancer prevention method used in women who are at risk) and be hyper-vigilant about screening and exams.

The second scenario is that there are residual aytipcal cells in the area and the surgeon will try to get to clean margins.  Ongoing treatment in this case would be determined by me and my doctor.

The third scenario - I'm not going to call it worse case, because there are worse things - is that pathology shows that this has crossed over into DCIS.  The surgeon will work towards clean margins, but if they are unattainable with a lumpectomy, further surgery may be required.  A diagnosis of DCIS would be an instance where radiation therapy could be used as well.

So that's the physical side, the nuts and bolts of it.  As for the emotional side... how much time do you have?

Erin's first reaction was a quivering lip and a look of disbelief as a tear rolled down her face.  Her second reaction was "Mom, you can't die because Dad and I would be screwed without you."  Dan concurred, and we laughed.  I'm taking it as the highest of compliments.

Dan is handling it pretty damn well.  He knows he can't melt down right now, because I need him.  We joked today as we sat in yet another exam room at the World Famous Mayo Clinic - how many times have we done this? Enough already.

As for me, good God, 2012 cannot end soon enough.  Just to recount in case you've forgotten:  an ovary removed in April, a tooth extracted in June, and oral surgery to remove two more teeth in July. That didn't do the trick, so I ended up in the hospital for 5 days with osteomyelitis, had another oral surgery, and then spent the month of August with a PICC line in my arm to administer antibiotics.  In November, I spent time weekly at the clinic as I worked with a therapist to deal with the upcoming anniversaries and holidays that we would be facing.  And now, a routine mammogram leads me to my fourth surgical procedure this year.  I hadn't had general anesthesia since I had my tonsils out while in college 22 years ago, and now four times in one year?  The same year my daughter died?  How is that possible?

I have a lot of choice words I'd like to write, but children may be reading this...

Now, in the grand scheme of things, even the worse case scenario here is not really life threatening.  DCIS has a 99% survival rate.  I really, truly feel I'm going to be ok.  But, for me, it's just one more thing in a year of things.

So, we are all exhausted and hoping we don't have another fight ahead.  But if we do, we know this:  we'll have lots of support, we'll do it together, and we'll manage to laugh about it along the way.

Merry Christmas 2012

The rituals of Christmas are upon us and we're doing pretty darn good.  Ms. Erin is helping us stay grateful, stay in the present.  Just like any other year she was keyed up to open gifts on Christmas Eve.  Equally enthused to make sure Jen and I opened gifts from her.
Smiley; new phone case and jammies
Jen, Erin and I tried out a new tradition for Christmas Eve and crashed in on some friends as they celebrated.  Just visiting, enjoying some laughs and drinks.  Nothing heavy.  Just nice.  Not so much about what we have been but what we are today.  That felt right.

We returned to our house around 6 to fire up the fondue pot and the three of us enjoyed steak, potatoes, mini-wieners and crab legs. Erin was happy.  

On Christmas Day we will open our home to family (and anyone else brave enough to stop by).  We will likely take time to reflect more on our celebration with Ms. Shannon a year ago.  There will be tears, but there will be even more laughter.  Laughter and love.  Sounds like Christmas!

Saturday December 22, 2012

This week zipped by, and somehow, I didn't manage to find the time to blog.  Time for a "state of the family" update...

We have reached the winter break and with the help of a winter storm this past week, it's going to be a white Christmas.  That winter storm provided Erin with a day off as schools were closed on Thursday, and she was perfectly content to stay home and do nothing all day!

In all seriousness, Erin has soldiered on and is managing to keep her grades up and do what needs doing at school.  She tells us she struggles some days to concentrate and focus - Dan and I know exactly what she means - but she's doing it.  Now, she has 11 days off to sleep in, hang out with friends and family, and recharge her batteries.

Dan had a productive week traveling in North Dakota.  The winter storm missed him up there, so he made it home safely and he, too, is looking for some time at home to recharge his battery.  After the first of the year, things will be very busy for him with new customers coming on board.  Much like Erin, he manages to focus well enough to get the job done.  We are all grateful for that.

As for me, I met with my publishing group again this week.  I'm still amazed at how much goes in to publishing a book.  Things will ramp up starting in February as we work to get some publicity and press in advance of the publication.  We're hoping for exposure in local, Twin Cities, and - cross your fingers - national newspaper and television outlets.  Scarletta Press even tweeted about Determined to Matter yesterday with the hashtag "#mustread".  For those of you on twitter, check it out @ScarlettaPress and please give it a re-tweet.

We continue with our calendar game and there's no escaping this date:  December 22nd last year is the day we packed up our minivan, checked out of St. Jude, and headed on the 12 hour drive home from Memphis.  (There's an untold story from that drive home, but you'll have to wait and read about it in the book.)  We all wanted to be home for the holidays last year, and we made it.  We arrived home to a house decorated for Christmas, complete with a light up sign on the deck that read "I heart Shannon".   Those memories remain so vivid for us.

Shannon's friends are remembering, too, and have been sharing those memories with us.  We received a beautiful Christmas ornament - a hockey skate with wings and Shannon's name written on it in lime green - from one friend, and a touching, hand written letter from another.  Suffice it to say, we're not the only ones recalling last year's holidays and the last of Shannon's days here on earth.

But now it's December 22, 2012 and we are gearing up to see our family on Christmas Day, 2012.  We are hosting - both our families - and everyone who is within driving distance is coming, along with Grandma and Grandpa Harkins flying in from Nevada.  Now, this may sound like a crazy idea to take on the job of hosting 40 people, but we want to be home, and our families want to be together.  It will be a casual, open house style day, and we will laugh and cry and reminisce.

It will definitely be a full circle moment for all of us, but it feels right.

Sunday December 16, 2012

Our rollercoaster ride provided us with a few peaks this weekend.  We are all over the map with our emotions and feelings, but we figure if you all are going to listen to us bitch on our bad days, we should share with you the good.  

Saturday we spent the entire day baking and decorating Christmas cookies.  This is a tradition, and it's something I've always looked forward to each year with my girls.  

It was still fun do with my girl, singular.  

Erin loves baking, and we played Christmas music and made a mess of the kitchen.  We've got a lot to show for our efforts:  dozens of frosted sugar cookies, peanut butter blossom cookies, chocolate dipped pretzels and chocolate covered peanut butter balls. This is dangerous - our will power will be tested around here!   

Of course throughout our baking day, my mind wandered to last year's feeble attempt to keep up this tradition:  Erin and I baked cookies in Memphis with Grandma, while Shannon was vomiting in the other room.

But my mind also wandered to happier memories when the girls were younger and they wanted to "help" with the Christmas baking.  Their "help" sometimes resulted in inaccurate measurements or eggshells ending up in the mix, and you could count on frosting and sprinkles ending up everywhere.  All part of the fun, and such good memories.

Today we went to church, caught up on homework and laundry, and then attended Erin's winter piano recital.  Erin does love learning to play music, and she's got a good vibe with her teacher, Glenna.  

Erin played a rousing rendition Rudolph the Red Nose Reindeer.  She looked poised and mature up there, and we told her we are proud of her.  Erin rolled her eyes and teased us that we'd be proud of her even if she sucked.  We scolded her that she shouldn't talk like that, but she rolled her eyes again and said that's how 7th graders talk.  (By the way, she didn't suck...)  

We got to spend a lot of time with Erin this weekend, and it was nice.  I think that's what she wanted, too, and Dan and I are up for that.

So there was something good in each day.  In all our sadness, it's helpful to recognize those moments that feel good.  A little peace amidst the chaos.

A busy week ahead for all of us.  One day at a time...

Saturday December 15, 2012

Going to take a crack at getting some thoughts out.  I am struggling this week to make sense of it all.

This was a tough week even before the news broke of the shootings in Newtown CT.  Now I am really having a tough time shaking the images in my mind of the terror, the shock, the mass grieving that is taking place today.  I can't watch the news.  I am not stable enough at this time to try to absorb the horror or to piece together a political opinion.  Wait, I've got a couple; if you sell weapons (legally or illegally), how can you not look in the eye of your customer and ask "what do you have in mind here fella?"  And if the Second Amendment of our Constitution was written when there were assault rifles and automatic weapons would it include the same protections?  Of course, most of us want to fit the blame into a tidy little box and move on.  It's really complicated.

Prayers that we have reached a tipping point.  Prayers for these 28 families who are going to be struggling to ever feel Christmas joy again.  Prayers that the anger can be diagnosed sooner.

One-at-a-time, Jen, Erin and I have each taken the time to assess our mental condition and the results have been the same; we are fragile, we are survivors of a nightmare and we need help.  Acceptance of this condition is hard.  I have to remind myself asking for help is not a sign of weakness.

I traveled through some airports this week and had time to listen to my music with my headphones on with the busy world bustling by all around me (think O'Hare H terminal).  The combination of music and memories of Shannon and the people in our lives opened a faucet of tears. People looking into my eyes had to be wondering "what's his problem?".  I made no attempt to hide my tears.  I didn't care.

Also this week, I watched the Sandy Relief concert from New York with performances from Bruce, Pink Floyd (Roger Waters), The Who, The Stones, Billy Joel... those were my peeps.  Each performed songs attached to so many memories of a carefree youth.  And at the same time they were playing to raise money for people who have lost everything.  I know I tend to quickly move on from tragedy but there is still major suffering on the Jersey coast, parts of NY.

For this family, our daily reflections include a one-year-ago-today look back.  A year ago today, Shannon was being pushed around the St. Jude Children's Research Hospital campus in a wheelchair for blood draws.   Still an active participant in a clinical trial.  Still hopeful.  Still alive.

I'm not sure how I can tie it all together.  I can't.  It's messy.  But we all know someone that has suffered tremendous loss in their lives.  Just remember, they are still living with that loss everyday.  You may have moved on but they never will.

OK, that's pretty heavy-duty.  Just an awareness I live with today.  I think I am grateful for that awareness.

Tuesday December 11, 2012

Erin and I attended the Mayo-JM girls basketball game tonight at the John Marshall gymnasium.  Some of the best times of my high school years were spent in that gym.  Can it be 25 years ago?  Back then, the JM-Mayo game was the biggest of the year. (Yes, to us it was JM-Mayo, but now I find myself calling it Mayo-JM!)  Anyway, it reminded me of a simpler time and good memories for me.

After the last couple of days, I wasn't sure we'd be going out tonight, but Erin was up for trying to socialize a bit, and she sat with her teammates and they dreamed about the future, imagining themselves out there playing one day.  Those dreams have been hard to come by lately.

The three of us are finding these days difficult, and it's taking some extra work to persevere.  Erin couldn't make it to basketball practice last night.  Just. Couldn't.  And we told her "it's ok".  She told me through her tears, "I can't be Smiley tonight."  I told her she never has to fake that for someone else's benefit, but that's her instinct.  Make others comfortable.  That's what we do.  But sometimes, we're just not up for it.  Erin is missing her sister in the worst way lately.  The first snowfall triggered so many memories of happier times spent playing together, sledding in the back yard and building snow forts.

So we are all feeling it intensely right now, and we are all needing help to get through it - from each other, from our family and friends, and from professionals.  Erin and I were joking that it's too bad Mayo Clinic Psychiatry doesn't have a buy one get one free deal.  Or a family punch card where the 10th appointment is free.  Now, this may strike some of you as sick humor, but we've got to keep laughing, even if it's at our own expense!

We are doing what we can each day, trying to look ahead and dream, and at the same time, just trying to survive these days.  These dates on the calendar remind us of where we were a year ago: Shannon in decline, and our family in crisis.

The holidays are always a reminder of the year that has passed, and this year has had so much pain in it for all of us.  And I don't mean just the three of us.  I mean all of you who have shared in this journey.  We know that Shannon not being here has left a void in many lives.

We've been debating about Christmas cards.  Should we send one?  What would it say?  What picture would we use?  How will we ever take a picture again that accurately represents our family?  Still undecided on that one.  You might get a New Year's card from us this year.  Or maybe I'll be ready by St. Patrick's Day.  Who knows...

And yet, as we get to the end of this year and we're trying to take stock of things, we can see the love we've gained, the awareness we've gained, and we know we are better people for what we've been through.  We're better people for having had Shannon in our lives, and the desire to honor her memory is the reason I know we will right our ship and carry on.  There is really no other option.

"When everything is dark, when we are surrounded by despairing voices, when we do not see any exits, then we can find salvation in a remembered love, a love which is not simply a recollection of a bygone past but a living force which sustains us in the present.  Through memory, love transcends the limits of time and offers hope at any moment in our lives." - Henri Nouwen

Sunday December 9, 2012

A cozy good morning from our winter wonderland.  The season's first snowfall is underway; brown grass has been replaced by fresh white everywhere.  Not a major event in Rochester MN - maybe a couple, three inches by days end - but north and west of here its on-like-Donkey-Kong.  Almost 50 years of living in Minnesota and I still get a thrill out of the season's first snowfall.

Erin and sleepover pal Lexie are up early out playing in the snow.  Inside, warm and smelling of fresh coffee (loving this Trader Joe's New Mexico Pinon), Christmas tree and home.  Feeling grateful.

Feeling grateful maybe because Jen and I saw Flight last night.  Denzel's character Whip Whitaker portrays addiction so completely it made me angry, frustrated, "why can't he just stop?"   The writer of Flight's screenplay had a clear understanding of the disease.  Maybe that's why my sense of gratitude is heightened this morning.  A powerful film, no doubt.

Jen's roller-coaster week took another dip Saturday.  She was supposed to be on a girls weekend in Michigan.  But Jen's pal Teri called just a few hours before departure, so sick she was barely able to scratch out the words "I'm sick".  File that cancellation under the "out-of-our-control"column.

Things out-of-our control.  God's will.  Acceptance.  Got it.  No confusion here.  Now stop.

Instead of flying to Michigan, Jen hung with me and Erin at the Mayo 9th grade boys basketball game.  These are Shannon's class of 2016 mates and they are honoring her with her #9 on the back of their team warm ups.

Maybe, that's why I'm grateful today.  You people won't let us forget.

Wednesday December 5, 2012

A year ago today, we headed to Memphis, TN.  That's one of those days that's like a photograph in my mind.  Shannon was wearing her airbrushed hockey hat with her name on it, and a nervous smile.  We arrived in an unfamiliar place, and we were scared. We felt we had to go, and I can admit now, it was the first time in our journey where I felt desperate.

While our time in Memphis was filled with so many sad days, I am grateful that we got exposure to St. Jude Children's Research Hospital.  I contend that anyone who is treated there, even if it's only for 17 days, is changed by the experience.  Part of our mission going forward is to support St. Jude through our foundation.  Shannon wanted to make a difference, and we will continue to work towards that goal.

We have reached this season of anniversaries for us.  The next month will be a tough one, but we continue to find strength by sharing memories and stories, by sharing Shannon with others.

Last night, Shannon was everywhere.

She was on the minds of the Mayo and JM/Lourdes girls hockey players who sported lime green ribbons in their hair, and lime green tape on their shin pads and their sticks.

Shannon's friend Taylor shared memories of Shannon and let the crowd know about the kind of spirit Shannon had.  Taylor has known Shannon since kindergarten.  Not a dry eye in the room after that one.

Shannon was on the minds of her former teammates, coaches, and friends who were there.  She was on the minds of the Rochester youth hockey community who showed up to hear us speak and share our message.  People bought t-shirts and bracelets and helmet stickers and helped us raise over $3000 for the Shannon O'Hara Foundation.  Amazing.

Hell, Shannon was even on the zamboni!  Literally.  A tribute to her and her picture now adorn the Graham Arena zamboni.  She must be laughing about that one...

Erin was on people's minds, too.  Her basketball teammates came out to support her as we walked on the ice to speak to the crowd.  Some of these girls never really knew Shannon, but they know Smiley, and they were there for her.  Erin stood proudly as we talked about her sister, and carried herself with a confidence beyond her years.

Tomorrow marks 11 months without Shannon.  The days are moving quickly now, and the memories of a year ago are painful.  But the memories shared last night were happy ones.  Every time we gear up to go speak, I have a teeny tiny panic attack about doing it.  But then when I get there and see my friends supporting us, and I see Shannon's friends honoring her, I remember why I want to do it:  I can't bring her back, but I can carry her spirit forward...

Sunday December 2, 2012

It has been a whirlwind weekend and Sunday night has come much too quickly.  Dan and I spent 14 hours traveling on Friday, had 12 hours at home, and then Saturday morning we were on the road to Mankato for a two day basketball tournament.  Two games Saturday, one night in the Best Western, and two games again on Sunday.

Smiley played a lot of minutes this weekend and even made a great move to the basket for a left handed layup today.  She enjoys the tournaments, but it's as much about the time with friends as it is about the basketball.  When you are an only child, it's good to have teammates.  Shannon's buddy Anna was also along for the weekend to watch her little sisters play.  Erin and Anna have a sweet big sis/little sis vibe, and this picture Dan took of them is so damn cute I have to share:

Now, we will settle in for a busy week ahead.  The calendar has turned to December, and that brings us full circle in some ways.  A year ago, we knew that Shannon's condition was deteriorating, and we made the decision to go to Memphis and try and take part in the clinical trail at St. Jude.

A year ago this coming Tuesday, Shannon skated for the last time.  Ever.  December 4th.  The universe is a strange place - Tuesday night will be at Graham Arena again, this time as a part of the Mayo vs. JM/Lourdes Girls Hockey game being played in memory of Shannon.  Full circle.  We will speak briefly to share our message and our mission, and then we will watch Shannon's friends out there on the ice.

Dan and I have spent a lot of time together this past week and we've spent some of that time sharing and reflecting.  Here are some of the things we think we know:

- We're not so good at small talk anymore.  Meeting new people and getting to know someone is always going to be a challenge from here on out.  Our story of who we are has an element of sadness, no way around that.  

- We still like being together and we enjoy each other's company.  Dan and I are a team.  Thank God for that.

- We are so lucky to have Erin, and when we are away from her, we can't wait to be back together.  In many ways, she's our leader now.

-  We still like to laugh and we laughed a lot this weekend.  Sometimes it's gallows humor, but if we didn't laugh, we'd go crazy.  

-  We can tell stories about Shannon endlessly.  It seems to be coming up more often and more easily these days.  Thank God we have people who will listen.

So, the holiday season is here.  We are treading lightly on these days.  We are not alone, as the holidays are a tough time for many people. We aim for kindness with ourselves, and we try to take each day, and each memory, one at a time.

"Be kind, for everyone you meet is fighting a hard battle." - Plato