Friday, June 29, 2012

What makes a hero? **update**

Ask any hockey fan.  Who is your favorite player and why? You'd hear all kinds of names for all kinds of reasons.  The Minnesota Wild Road Tour came to town yesterday and I would guess some of the names you might hear mentioned could be Justin Falk, Chad Rau, our own Matt Cullen, or Wes Walz. Along with FSN tv announcer Anthony Lapanta, they were all part of the Minnesota Wild Road Tour this year.

I arrived at the parking lot to drop Colton off at 10:15, 45 minutes before the start of the event- and this is the line that had formed already.  The humidity was high, but so was the enthusiasm for the players.  In addition to meeting the players there was a climbing wall and several drawings for an autographed stick and puck.



Matt came right from his morning work out and donned a black Moorhead hat with the orange M on it.













The media interviewed the players before they sat down for autographs.



Then, Moorhead Youth Hockey Association President, Steve Iverson, presented Matt with a photo commemorating his 1,000th game.  Rick took the photo of Matt and created the print for him.  Steve didn't have a microphone so it was hard to hear his speech- but the words "hometown hero," were used. 





You would think NHL hockey players receive prints, photos, gifts, like this all the time.  That somehow they have stacks of memorabilia everywhere.  Perhaps they do.

But in an extremely genuine gesture, Matt called Rick yesterday while driving his boys to soccer.  After signing hundreds of photos, jersey's hats, etc., posing for pictures, answering questions for hours, he thought to call Rick and thank him. 

Matt is an exceptional hockey player.  The kids all admire his NHL career.  Those two things alone make him a stand out.  But to me, his truly distinguishing quality, is Matt's character and the genuine and humble way he conducts himself.  

I see the plastic surgeon today.  I will let you know what she has to say soon!  Thank you for all the emails, prayers, and well wishes!  


Update**

I returned home from meeting with Dr. Antoniuk awhile ago.  She poked and prodded and then re-cauterized the wound and dressed it again- and ouch.  Between the exam and almost back to back cauterizations, I was a bloody mess and am pretty sore. But...

She has a plan! I will go into detail when I can get some of the discomfort under control!  Be back soon! 









Tuesday, June 26, 2012

wound-care

This kind of "wound care" is unorthodox. 

 You certainly don't need a prescription, or even a doctor. 

You just have to show up. 

 Sometimes the best "medicine" for a weary wound, is simply distraction with a healthy dose of sunshine, light, and nature. 

 Oh and Zorbaz pizza-helps-a lot. 

And a friend with a fast boat and a love for fishing. 

The lakes were calling. 

Despite the wound- I feel good. 

 Swimming might be off the table- but boating, sunset watching, and photographing everything- totally hit the spot. 


 

















My Jesus Calling devotion for today: Stay calmly conscious of Me today, no matter what.  Remember that I go with you into the day... Collaborating with Me brings blessings that far outweigh all your troubles.  



Not only did I see the wound care nurse today... but she was thinking maybe Dr. Bouton should take a look again.  Not only was Dr. B available- he came right over.  How is that for timing?  He thinks I need to see a plastic surgeon.  (Friday at 9)

I have three (not very good) options as he sees it:

Skin graft surgery.

Skin flap surgery (muscle and tissue and skin taken from the back- big operation.)

Wound debridement surgery (already tried once.) 

But maybe the plastic surgeon will have an idea?  

Collaborating- is there truly any other way? 

I've been so touched by all of your support- encouragement- and caring... thank you all.  








Saturday, June 23, 2012

What to grab, what to let go


I awoke Friday morning to a wound three times the size it was the day before.  I could be the poster child for "Wounds gone Wild" and there is no celebrating the wild part of it. As I went to find all the supplies to clean and dress the wound, a box showed up on our doorstep.

My new swim suit- made for women with a mastectomy.  I had such hope of wearing it soon.  I believed this time I was healing for good.  I tried it on with the triangle of my bandage sticking out and no skin visible to attach a prosthesis too.  Epic fail, again.  


The more I take in stride, the more I am asked to take in stride.  And yet it has me constantly heart-kneeling with open hands to receive the fullness of His blessings.  Because I don't think we're meant to examine one piece of what is given to us, to the exclusion of all the others.  


So after a quick tear filled call to my Superman who sat and listened patiently, I laid it down again.  I pour out loss, anguish, uncertainty... and try to make room for peace.  

The wound care nurse sighs when she sees months worth of her diligent efforts, go for naught again.

The only option that has been presented to us as a "maybe" solution, is a skin graft surgery.  A major operation.  Is this "chemo" break meant to help me find a solution to my open incision? 

Each decision carries so many ramifications.  So often we seem to solve one problem only to trigger two more.  

I truly don't know what my next move should be, if any.




A break from chemo, doesn't stack up to a break from all things cancer.  I'm feeling a little adrift, trying to figure out what to grab onto, and what to let go.











Wednesday, June 20, 2012

Leaving a legacy...







Have you ever thought about the kind of legacy you want to leave? How do you want to be remembered?  When your children think of you, what do you want them to tell their children?   



  My blog friend Shari, who also lives with stage iv breast cancer, asked me my thoughts on leaving a legacy and you kind find my post here today. Will you come over and find me? 






Photobucket

Tuesday, June 19, 2012

The best Father's Day gift...



I used this quote from the Fight Like a Girl Club.   But I'm totally gonna talk hockey.  

Summer hockey.


Every time our boys move up within the levels of hockey something gets added.  Speed increases, the game forces quicker decisions, and the ability to gel with new team mates is tested time and again.  

This year, the 2012 Pepsi Cup hockey tournament took place over Father's Day weekend.  One of the newest challenges our kids faced was that of checking which made for some nervous, anxious moments.  Each time a crash was heard along the boards, each time our players either took a body check, or delivered a body check, if they lingered just a moment too long, flattened on the ice, our hearts dropped.  

Would they get up again?  Would they go back in?  

Checking changes the game of hockey.  How were our kids going to respond to this challenge? 

The nerves were in abundance.  Not only were our kids anxious about what they would face in their competition, so were the parents.  Would the other team be bigger size?  If they were from Canada were they more used to checking than we were?  Had the other team developed chemistry from playing together so long?  The unknowns you face are all part of what make AAA hockey a fun summer experience.




Nolan and Carter ready to go... our new jerseys turned out awesome.  


After a closely contested first game, we lost with only a couple of goals separating us.  Our boys came out and played physically aggressive and gritty.  It was a joy to see them relish playing physically in ways they have not previously been allowed to. 

We capped off our night with a barbecue at the Fullmer's house.  They graciously invited our families out to their house where we enjoyed being in a beautiful backyard setting down in the trees.  We ate great food, watched our boys explore through the trees and enjoyed each other's company. 




The newest addition to the team was a new coach.  I know my own two boys have looked up to Jordy Christian since they were 2 and 4.  Nolan invited Jordy to his 5th birthday party, and my boy's adoration of him hasn't wavered for the last 7 years.  

So when we needed a coach, and Jordy mentioned some time ago that he'd love to someday coach the boys- well the timing could not have been more perfect.  Colton even got to be part of the team as a back up goalie.  We knew Carter was solid in net and Colton was just happy to sit on the bench and help with warm ups.   



Saturday paired us with a team from Northern Minnesota that we beat.  And our game late Saturday afternoon?  Well with our team up 11-0, Colton was given the honor of playing the third period of hockey in net after all.    He made two saves and we later heard he was awarded an assist on one of the goals.  He was just so happy he didn't ruin the shut-out for Carter.  

Sunday morning we faced an undefeated team from Manitoba.  This team had beaten many of the opposing teams by a wide margin.  How would we stack up?

Well... we scored... and then they scored.

We scored... they scored.

Goal for goal we matched them, and remained tied at the end of the third period.

After 5 minutes of 4x4 hockey, we were still deadlocked.

The game would be decided in a shootout!

Every hockey player's dream!  

I don't think there was a single Dad feeling "cheated" on the entertainment factor of watching their sons play in a shootout on Father's Day.

They lined up.  One by one they went.  


(only some of these photos are from the shootout- with 1400 pics taken, I was happy Rick edited these for me to use.) 














We scored, they missed.  We missed, they scored.  

Until finally- we scored to go ahead by one,  and our goalie stopped them!  We won! 

We were going to play in the championship game!  

Sunday afternoon, the Moorhead Junior Spuds took on the Reebok Nationals in a re-match of their Friday night game.  We'd lost to them already.


But our boys battled back.  Their will and desire to win could not broken by the other team.  

For the second year in a row- the 2012 Pepsi Cup champions for the 2000 Boys' Division- 

was the Moorhead Junior Spuds!  

Nolan's face says it all...









While no trophy was offered this year, I grabbed the one for last year and Jordy and his mom Lisa, and dad Ed, graciously hosted our team at their house afterwards for a celebration.  


Forgive me for what I may have gotten wrong, and know that I probably left things out accidentally. I really hope to capture the "feel" of it for our boys and to document it for them.  

I was proud to see them pick themselves up time and again and keep at it till the very end.

I have no doubt, these are the memories they won't ever forget.  





Wednesday, June 13, 2012

What fills the days and nights...


It breaks your heart. 
 It is designed to break your heart. 
 The game begins in spring, 
when everything else begins again, 
and it blossoms in the summer, 
filling the afternoons and evenings, 
and then as soon as the chill rains come, 
it stops and leaves you to face the fall alone.

 ~A. Bartlett Giamatti, "The Green Fields of the Mind," Yale Alumni Magazine, November 1977





Nolan pitched the first couple of innings of his second game last night.  His coach, Coach Tehran, played baseball with Rick in college.  After facing just a few batters, Coach made a quick trip to the mound.  It  must have worked, Nolan pitched another inning afterwards.


He is growing his mother's long legs.  He has man sized feet, and needs adult sized shoes and pants.  "Growing," is more like "rocketing" in Nolan's case.  



My mom, Mary, came out to watch.  Even with the sun out it was only low 70's and with the wind it was chilly.


The sun was producing some of my favorite kind of light- but I didn't quite get it the way I had hoped.  Plus I spend so much time chatting with friends, I forget I even have the camera with some days.


Nolan and his friend Jacob- trying not to smile, and letting just enough of a smirk through to let me know, those little boys are still in there somewhere.  



I had to dash back to wound care today.  I had a completely scabbed over wound, but when the scab fell off, it left hypertrophic granulation behind, which is way more granulation than I need.  I had to have it cauterized again today.  Sigh.  On the plus side, it could mean the Tamoxifen is kicking in and doing its job.  Cancer at a standstill in other words.  The wound just doesn't register as anything more than a nuisance when you think of it in those terms. 

I even ordered a mastectomy swim suit for the summer... I'm never without hope!







Monday, June 11, 2012

Look good feel better



I have found that definite milestones along the cancer journey turn your attention to the "collateral damage" left in its wake.  My hair had already begun to thin.  I had cut it twice, each time hoping to create some volume of some sort.  Then one day I noticed my eyebrows started to thin and fall out, along with my eyelashes.  Add in the accompanying black circles, and sunken skin below my eyes and  it was a harsh reality to look sometimes, as unwell as I felt.

I had chemo the day before.  But when I asked about the "Look Good Feel Better," program, they told me the once a month session was the next day.  I'd been putting it off, but I could no longer deny I could use some help.

I couldn't have known I'd be the only one in class!  Plus, the woman who helped me purchase my wig is the cosmetologist, Vi, who teaches the make-up application for the class, on your left in the photo.  I was so surprised to walk in and see her there.  Vi is a breast cancer survivor herself and is the perfect person to teach from a place of understanding what it is like.

And the woman to your right is Sandy.  Sandy is a volunteer with a perpetual smile on her face.  She brings the warm blankets, the snacks, the concern and compassion for what you might be feeling during infusion.  On one day when I was struggling to fight off the nausea while still needing something in my stomach, she offered to make toast.  To this day I don't know if it was the toast that tasted so good, or if it was all the love it was made with that really agreed with me.  But Sandy finds a way to serve all of us, and minister to us and always says her goodbyes in the form of a blessing.  The one time my chemo got bumped to a Thursday, I made them go through a lot of extra steps so that I could go back to my regular Tuesdays.

The other incentive for attending the class is in that little red bag above.  It contains make up samples from some very well known companies.  There is Clinque, Estee Lauder, Mac, Nars, Merle Norman, Lancome, etc.  There is everything from cleanser to foundation to eyebrow pencils.  Its several hundred dollars worth of make-up to help us look good, and feel better.  The program is absolutely free, and sponsored by the American Cancer Society.  Every community should have a Look Good Feel Better program and its definitely worth attending it!

Speaking of "looking good," I had to laugh at Nolan.  To me this is quintessential "boy" reasoning.  When school is in session he is so good about getting up and showering.  But he was a little frustrated that mom still insisted on a shower in the morning when it was summer vacation.  The past few days, while I've seen Nolan get in the shower and come back out with clean shorts and t-shirt on, his hair doesn't have that squeaky clean appearance to it.  Assuming he might be ready for a new shampoo that could clean his hair better I asked him about it.  Completely exasperated with me he said, "Oh mom, you said I needed to get in the shower everyday, you did NOT say I had to wash my hair or use soap every day!"

Ha!  Will I ever learn?








Thursday, June 7, 2012

Chasing down normal


Normal day,
let me be aware of the treasure you are.
Let me learn from you, love you,
bless you before you depart.
Let me not pass by in quest
of some rare and perfect tomorrow.
Let me hold you while I may,
for it may not always be so.
One day I shall dig my nails into the earth,
or bury my face in the pillow,
or stretch myself taut,
or raise my hands to the sky and want,
more than all the world, your return.

Mary Jean Iron















I've decided coming off chemo is a little bit like losing a job. All of the trips to Roger Maris, the clinic, the lab, the infusion center kept me heavily scheduled.  Anticipating the 2-4 days of down time after each treatment kept me hovering somewhere between the my home mini-pharmacy and bed. Then there were those few days in between when I felt the urgency to accomplish everything and then some while I felt good.  


So now I've been set loose.  Freed from the heavy schedule of cancer.  And after 15 months of having my entire existence revolve around that schedule... I hardly know what to do with myself.  


I feel as though I am straddling two worlds. The cancer hasn't changed.  My prognosis- well statistically it still stinks.  But I have never let the statistics try to define me.  It doesn't mean those numbers don't hover over threatening at times to descend upon me and smother me.  I'm just learning to live fully in my moments, in spite of  the cancer. 


But what is different, is that we're not peeking in on the cancer as much.  We're not poking, prodding, mapping and sizing as much.  We simply don't know, and aren't try to know right now.  We're trusting.  I'm trusting.  Both in him, my doctor and Him, my Father.  I have to keep stepping forward in faith, even when I can't see.  Especially when I can't see.  


And what I can't see now?  Is what "normal" looks like.  I have such new eyes, I doubt my life will ever really go back to pre-diagnosis.  But in this reprieve I've been given, life can certainly take on a new flavor.  A new direction.  A semblance of old, with a dash of new sprinkled in.  


My faith grown out of the hard and uncertain, shapeshifting into a faith for the every day.  


It probably looks a lot like last night.  I know it felt right.  Sitting in the stands with friends, the golden rays of the sunshine streaming through the dust of the ball field.  Watching our 9 year old sons smack the ball around, attempt double plays, and spit sunflower seeds.


Normal

















































Monday, June 4, 2012

Every summer has a story...

I wonder what the "story" of our summer will be? We have a busy schedule, but life can't really be scheduled... its the moments surrounding all of the schedule that often are filled with the most life. So we dipped our toes into the shallow end this weekend. We went to Rick's Mom and Dad's lake. We spent Saturday with his mom's brother Don, his wife Cathie, and their youngest daughter Jen. Regretfully, I didn't take any photos at that time.
























 But we all sat on the porch with the sun streaming in, talking... 

 We ate home made ice cream... 

 The boys used their manners... mostly. 

 In between raindrops the boys went out in the boat and caught fish worthy of keeping.

We had a camp fire and made s'mores.

I went to bed early, slept hard and awoke to geese calling overhead early...

I borrowed Grandpa's camera and got some pics.  

And the world slowed.  

My phone stayed (mostly) in one spot.

I didn't go online.

I did read a book.

Nolan, Rick and Crosby took naps. 

And all around us, nature played.  

The hummingbirds darted in and about the trees.  

The blue jays played hide and seek with me and my lens.  

The squirrels chased all over the yard.  

Crosby turned 1!  

Our summer story has begun... 

I dipped my toes in and the longing to dive all the way in stirred... 

What will your summer story be? 




When you get lucky

When you get lucky

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