I love you Bretly

This blog has been your words, Bret, and now I’m left to write this post.  I hope that what I write here reflects you.  There are no words.  We had talked about this day, but the reality is so heavy. Since Bret and I met – 13 years and 10 months ago – in our freshmen year in college, we have been inseparable.  Even though we were so very young there was an instant connection and our bond throughout the years has held us together since.  We have often joked that he bought me for a nickel from my dad when I was a wee tike; that he had to come South to pick me up and spent years trying to move me North; that as opposite as we seem, that together we make a complete person.

Bret even wrote on his blog during our final return home from the roadtrip that “we’re inseparable.”  We literally did everything together.  We have traveled the US and abroad, we have gone from poor college students to careers in 3 states and even starting our graduate careers, taking classes together (just like in college), and restoring our historic home together in Rochester.  We have grown so much together over those years, and our relationship has shaped the people we have become.  Bret has imprinted himself on my heart and he is always with me. We recently moved back to our first home and I feel Bret here in so many ways.  His energy is palpable.  Bret’s artistic and engineering talents are all over our home; he has an incredibly creative eye that is unparalleled.  He is wicked smart.  One of our business school classmates once said that Bret, if given enough time, could figure out anything.  And not just any mathematical formula or engineering calculation, but he saw the world in a different light than most of us do.  Last fall before we started our road trip I was upset that our time was limited by cancer.  He said to me: “Look at the leaves changing outside, Shannon.  They will die and fall off the tree soon and in the Spring the cycle will start again.  We are too worried about death and not focused on living.”  His insight and continuing fighting spirit blew me away.  He really lived his motto: “Today is my best day.”  And living we did for the next year!!!  Amazing doesn’t begin to define him; no words do.

As I sit here at his computer, writing on this beautiful blog that he created, my heart is broken.  I don’t have him by my side – we have been separated and I feel like I’ve been cut in half.  Nothing takes the emptiness, the gravity of this loss away.

Even when we have been faced with enormous challenges in the last few months, I am thankful for every moment with this amazing person.   I have learned how to deeply and fully love because of Bret.  This is the ultimate gift and Bret’s eternal legacy.

I love you Bretly, always and forever!!!


To remember Bret and this journey of a lifetime, family and friends are invited to call at Miller Funeral Homes (3325 Winton Rd. S.) on Wednesday, Nov 16th from 4-8pm.  Bret’s service will be private.

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Safe Journeys Bret….Until We Catch Up

“Strength does not come from physical capacity. It comes from an indomitable will.”            – Mahatma Gandhi

Dear family, friends, and all who have been following the adventure,

It is with great sadness that we report that Bret’s journey has taken a new direction. He moved on yesterday morning with Shannon and the rest of the family at his side, at Strong Memorial Hospital, where he had been on inpatient hospice for the past week.

Bret fought like crazy to keep traveling and experiencing new things for as long as he could, but complications of his disease left him bed-bound for the last few months. He continued to talk about getting back on the road as recently as last week even though cancer continued its assault, making him weaker and causing more pain with each passing day. He fought for us to the end.

We’ve been trying to come to grips with what has been happening to Bret for many months, but this was still a difficult day. It’s hard to make sense of how this could happen to someone so vital.  As Bret said, it’s about the journey… not the destination. Bret’s life was a great journey full of adventure as well as generous lessons for the rest of us to follow. For Bret and for ourselves, we’ll be doing our best to “ride in a good direction” and treat every day as our best.

Over the last few months, when he was too ill to get out of bed, Bret was consumed by documentary videos and discussion about all sorts of world problems. He was passionate about so many issues….political deadlock, environmental sustainability, the need for a simpler life. Being around Bret made us want to be more.  He made us all want to “ride in a good direction” and “make today our best day.”

Thank you so much to everyone who sent comments, emails, prayers, and positive thoughts, as well as those who just stopped by. Bret checked his email and the site frequently. It meant a lot to him as well as us to see that his story was heard and made a difference to people.

With our sincerest appreciation,

The Hoefen Family

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Taking the Curves

We have been taking the curves these past few weeks — having good days and bad days (and perhaps more accurately, good hours and bad hours).  Bret is staying on the Sutent drug but at a lower dose, which seems like a better cocktail for treatment of his tumors but it prohibits healing of the large, open wound on his stump.  Our days are spent in bed entertained by documentaries, movies, current events, and great food, when Bret’s stomach is agreeable.  A few months ago, Bret asked his parents to stay with us out here in Pultneyville until…well, indefinitely.  It’s like we’re on the road trip again — Betsy and Jim with us here and Aaron and Ryan joining us when they can.  We don’t know how we can ever thank them enough for this time together and their amazing support.  We also feel like our “ride in a good direction” continues as Bret reads all his blog comments, emails, texts, and cards.  Although Bret’s fatigue doesn’t allow him to post updates or respond personally, he/the Hoefen family continue(s) to be deeply touched by all the support and Bret wanted us to express how much it means to him.

As we continue to reflect back on our journey of a lifetime, I thought I would share some of the curves along the way.

When Bret was diagnosed with cancer, he wanted to get a motorcycle.  But not just any motorcycle, the one he had dreamt about and talked to his brother Aaron about for a long time –a Harley Davidson Fat Bob.  It really is the coolest bike.  The crazy thing was, he had never ridden a motorcycle, but Bret, as with everything he attempts, excelled extremely quickly.  We would start out by taking little trips on the Fat Bob down the road to Burnaps for ice cream.  Ice cream provided the perfect destination…but the ride together, me squeezing Bret tight and him learning how to “take the curves,” provided the perfect journey.  This was just the beginning of our road trip.

Now that it has been over a year since Bret was diagnosed with CCS, I think back on this tumultuous time with both happiness and sadness.  Sadness because I don’t want to ride this road we’re on without holding on tight to Bret, and happiness because these have been some of our “best days.”

People ask us, what was the highlight of your road trip?  Well, for me, the highlight was truly the journey itself.  I have to admit that when Bret wanted to take a road trip across country, I wondered: How would we survive that long in a car together?  Seriously!  We do well for the first couple of hours in a car but then it goes downhill.  But I honestly don’t recall feeling that way once on our trip of a lifetime…this journey wasn’t about getting there; it was about taking the curves (like on Glendora Mountain Rd), taking the back road (seeing the bayous of Louisiana), taking stops along the way to enjoy the view (ahh, the vistas of Gila National Forest in NM), just taking time together (like “watching it get dark” in Key West).

But one of my “best” days was when Bret, Bets, and I were driving down Highway 1 (south of San Francisco), where the curves of the road parallel the contour of the amazing Pacific Coast.  Then “Om Nashi Me” by Edward Sharp started playing…the simple lyrics “I love you, And I love you forever, And I’m loving you now” as we drove the winding road seemed to capture, well, EVERTYTHING!  And I cried out loud to Bret, “We made it Baby!!!!!!” as the tears rolled down my cheeks.  Everything had just led up to this moment.

When I tried to convince Bret we should fly to Alaska instead of driving there in order to make it there in our condition, he said to me: “as cheesy as it is, it’s not about the destination, it’s about the journey.”  Instead of being on the road this summer, as we spend time together here in Pultneyville, I’m reminded of Bret’s blog post in which he said the intent of this blog is to “continue creating stories, building memories, and sharing my adventure”…I would just add “taking the curves.”  I love you forever Bret!

To view video online, go to:  http://vimeo.com/29506912

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Friendship and Laughter

There we were…two miles from the nearest paved roadway… yet at the edge of our property was a driveway going even further back in. There lived the Radell’s in a beautiful home on the hill looking down the valley toward town. Their son, Nick, and our Bret, were born just months apart and became close friends.

One of Nick and Bret’s adventures that I remember most fondly, was the clearing of a trail through the woods between our homes. It was a huge project that kept them hard at work for days, working from morning until night. The trail wound like switchbacks through the woods. We often hiked it for exercise as well as meditation. It was a gorgeous woods with aged trees and low undergrowth. The rays of late afternoon sun, sparkling through those trees, were magical. That trail was such a gift.

There were many, many adventures through the years. Although their paths have taken them in different directions, the friendship has endured. Both Nick and Bret were blessed to find and marry very special ladies. Nick and Jenn have two sweet children and live in New Jersey.

A couple weeks ago in mid-July, Nick and Jenn brought Nick Jr. for a visit with Bret and Shannon in Pultneyville. Jim and I were thrilled to join them. Bret was still able to get up at that point and the visit was set up out on the porch. It was a beautiful day in so many ways.  It was great to reconnect with old friends…better know the new…take turns walking that sweet baby…and share memories. What I best remember about that visit was the beautiful sound of hearty laughter. Genuine, side-spitting laughter cannot be manufactured…it is simply a gift.

Can there be any better medicine?

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                                           Happy Anniversary to a very special couple!

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A Rock and a Very Hard Place

Bret started a new chemo pill called Sutent on June 1. This drug works by depriving the tumors of oxygen and blood supply.  We were all very excited and hopeful when Bret started to see some positive effects of this drug. He noticed that the tumors in his wrists seem to be shrinking – causing less pain and limitation of mobility.  The tumors on his skin surface seemed to liquefy into something more like blisters than tumors. Unfortunately, depriving the tumors of blood and oxygen also deprives his skin of these important nutrients causing his skin to break down. His incision, which was fairly well – healed suddenly started to break apart.

Because of the side effects from the drug, it is administered in a cycle…4 weeks on…2 weeks off… As soon as Bret went on the rest period, the side effects minimized but tumor development returned almost immediately.

Currently, Bret is in the second week of the second 4-week cycle of Sutent.  It is again keeping the tumor development at bay, but his skin has become very problematic. He has a lot of open wounds that are increasingly painful. It has become very difficult if not impossible for him to get out of bed. He is caught between a rock and a hard place.

The best diversion continues to be expanding his awareness of history…current events and a wide array of subjects that come up. He is watching documentaries…movies…specials…etc. His keen interest in everything around him makes our visits wonderfully stimulating. We are constantly discovering new subjects to explore.  Despite his pain and discomfort, Bret continues to keep our heads riding in a good direction.

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Aaron’s visit…as told by Aaron

So, the Nick Tahoe’s experience didn’t quite live up to our high hopes.  I think the recipe changes after midnight and it can only be noticed in a completely sober state (an extra scoop of grease to keep the volume up and the cost down)!  It didn’t matter.  This was my first night home on a week long stretch with my brothers.  The company couldn’t have been any better!

While all three of us brothers moved away to attend Universities up and down the East Coast, I am the only one that hasn’t found a way back home.  This has been difficult for me over the past 9 months.  I have been fortunate to be able to meet Bret on the road several times and also to make it home when adventures were more local, but I would rather spend every minute there.

This trip was planned at the very last minute as Bret and I talked back and forth about where and when to meet.  Would I fly to the West and meet for a Yellowstone adventure?  Well, after trying to make a grand adventure work out, we decided that a little lower key and closer to home sounded pretty good!  I was flying in and out of Rochester and we would travel in the Northeast.

After slowly waking up, still tasting the Garbage Plate, we got packed up and hit the road.  As Bret wasn’t feeling very well, we made a couple attempts to get going, but eventually started making good time heading east.  The first day, we made it to Old Forge, NY in the Adirondack Mountains.  We decided to spend the night in the Volvo in a campground.  It didn’t take long to figure out that the Volvo is great for two, but maybe not for three to sleep!  It got really warm, so we had to open the windows and sunroof.  Then the combat trained mosquitoes launched an all out assault.  We ended up throwing blankets over the windows to keep the bugs out and get a little air flow.  More effective on the bug screening than the air flow!

After a few hours of broken sleep, we were on the road again heading toward Vermont.  Soon after driving out of Old Forge, we noticed a sign on the side of a barn advertising Sea-Plane Rides.  How could we not turn around and inquire?  We decided to go up for a 15 minute ride and then decide whether we would extend to 30 minutes.

What an amazing feeling taking off from a calm mountain lake with beautiful early summer views all around us!  Then the turbulence started.  I can handle the bumps on big commercial jets, but the rising pockets of warm air were throwing us back and forth in this small Cesna fitted with pontoons.  It didn’t take long for Bret and I to look at each other and decide that 15 minutes would be more than enough!  Even while clinging to the seats with white knuckles, what an amazing experience!

After landing safely back on the water, we were back on the road.  We continued northeast where we were going to catch the ferry across Lake Champlain into Burlington, Vermont.  This ended up being a bigger challenge than we had expected.  The first two ferry docks were under water due to recent heavy rains.  Fortunately, the last and most northerly was open and running.  We made it safely into Burlington where we decided that a Marriott would probably help us get a better night of sleep!  Before calling it a night, how could we come through the home of Ben & Jerry’s and not grab a pint or two?

     On the third day, our destination was Mount Washington in New Hampshire.  After crossing out of Vermont into New Hampshire, it was time to find some lunch.  At this point most of our driving was in public State Park lands, so restaurants had been hard to come by.  Then, in a small distance between parks, we passed through the small town of Conway.  We noticed a Boar’s Head sign in front of a small café so we decided to stop.

Once we entered the front door, we saw that there were several people standing in an attached dining room.  When we inquired about what was going on, the woman behind the counter informed us that Newt Gingrich was giving a campaign speech.  While none of us are Gingrich supporters, we couldn’t resist the chance to see him so close and personal.  After several pictures, an autograph and a hand shake, I might just have to vote for him!  Okay, that might be pushing it, but still an amazing coincidence that we happened to stop at such a random spot and have this experience.

By early afternoon we were at the base of Mount Washington, the highest point in the Northeastern United States.  Mount Washington is most renowned for two things; being the earliest and most noteworthy drivable mountain peak and having the highest recorded wind speeds on the surface of the earth.  As we pulled through the entrance gate, the attendant informed us that visibility was poor, but we didn’t come all this way to not make it to the top!

At about mile 1, we pulled around a curve in the road to find a black bear in the road.  It quickly entered into the edge of the woods as we approached.  We were excited to get a good photo, so Bret was going to jump out of the car and chase the bear to get closer.  Being the protective type, Shannon replied “No Bret, Aaron will do it!”  Thanks Shannon!  Now I know where we stand!

After a hairy ride up the mountain with narrow cliff-hanging roads, switch backs and steep inclines, we made it to the top.  Sure enough, you couldn’t see more than about 8 feet in front of you.  It was chilly, very windy and extremely foggy!  After a quick walk around, we headed back down about a hundred feet to get below the thick clouds.  We stayed there a while and enjoyed the amazing view!

The following morning, we were on the road and making great time on the highways heading back to Bret and Shannon’s house.  During the drive, we started making plans with Mom, Dad and Ryan to have a family adventure in the Rochester area the following day.

In the morning, we all met in the bay area where we took a shuttle ride to a kayak launch.  We each jumped in a kayak and paddled down the river for a few hours.  It was a great experience on a mild early summer afternoon.  What a great way to spend my last day in Rochester with the family!

More on the kayaking adventure in our next blog…

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Those of us with brothers…sisters…cousins know a bond that transcends all the little squabbles of childhood and beyond.  The love of a sibling is just one of those priceless things that we can count on in life. How we delight in watching our grandchildren (Bret and Shannon’s nieces and nephews) forge those relationships,  knowing how important they will be for the rest of their lives.

In 1975, when we found the perfect house for our “back to the earth move”, our realtor/ family friend expressed serious concern. She was certain that our children would suffer  socialization deficits by moving them so far from town.   In actuality, our children became each others best friends. They had no choice but to enjoy each others companionship. What great times they had and what great friends they became!

When Bret received the phone call that his ankle problem was CCS, he turned immediately to his brothers. Many times physically, but always emotionally, they have been right by his side. Recently, the news that the tumors were again spreading had Aaron making flight arrangements and Ryan ready to pick him up.

The three brothers, and of course Shannon, started the visit with a late night “snack” which Bret wrote about below.

With my brother Aaron coming into town late Monday night, I spent the day resting in bed saving my energy so that we could go pick him up from the airport.  At midnight on our way to the airport, we stopped to pick up Ryan.  Then when Aaron finally arrived at the airport at 12:30 we headed to the only reasonable place at such a late hour, Nick Tahoe’s, for the authentic garbage plate.  When I saw the pool of grease at the bottom of my styrofoam container, I wasn’t even remotely interested in digging too deep into my dish.  I polished off the burgers on top, and welcomed the ridicule from my brothers who worked their way through the then congealed spoonfuls of grease.  Ryan is trying to see the patient side of cardiology.  Such a great night having both brothers together again!!

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Steel Magnolia (Urban Dictionary: A southern woman who is strong and independent, yet feminine)

Posted June 14 by Jim and Betsy

In Bret’s “My Story” section, he introduced us to his, “amazing wife Shannon”. Throughout the year, it must have become clear to any reader just how accurate that description is.  Shannon truly is amazing. The smile is for real and it is always in readiness. She captivates everyone she meets with her gracious southern charm. How we all love her! And how obviously Bret loves her. Aunt Shannon has a special touch with her neices and nephews, who adore her and Uncle Bret.

As Bret’s parents, we are grateful beyond words that he has Shannon by his side. There is no one on the planet that could give him the kind of support that Shannon so eagerly provides. She never leaves his side.When Jim asked her once how she holds everything together so well despite the situation, she reminded him  that is why southern women are referred to as steel magnolias. Oh, yeah…

Her steel structure has a lot of support.  All those people who are important to her have become precious to us. She has  loving, understanding, supportive parents…sister…family. Rich and Ed, her bosses, are unbelievably considerate…as well as JLag, HP, and all Bret and Shannon’s incredible neighbors and friends. We are so grateful for all.

Bret and Shannon continue their immersion  in history and pleasure in debate. Last night, following a movie on Henry VIII, we had a great discussion about parallels between contemporary life and 14th century religion and politics.  We rarely have closure… the discussions are always to be continued…as is this blog!

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Guest Post

This entry is being posted by Betsy / Bret’s Mom. I have Bret’s permission to be a guest blogger.

This has been a particularly difficult phase of our CCS journey. After Bret’s truly remarkable adaptation to life with one leg, we all assumed and hoped that he would have a period of relative normalcy…some time to travel and enjoy life without the anchor that his leg had become. It was a supremely cruel blow when tumors surfaced within weeks. It comes as a surprise to none that he needs time to put thoughts of his situation out of reach when he is able. Blogging is just not possible right now.

I want to thank all of you for your amazing support. It continues to mean so much. Bret reads all his comments and e-mails. We all draw from the power of shared love and concern.

Currently, Bret finds comfort in relaxing in his home. The weather could not be sweeter. He and Shannon are enjoying that gentle lake breeze and summer sounds coming through their windows. He has been watching biographies…historical programs…and documentaries about our world challenges. The latest program that captured his attention is a documentary called Blind Spot. It is an eye-opener that we all recommend watching. We have wonderful thought-provoking critiques after these programs and contemplate the significant changes we could make based on what we learn.

Because of the tumors in his arm and spine, Bret is cautious about doing too much physical exertion. Even the use of his crutches could be aggravating the tumors in his arm and spine. However Bret and Shannon have enjoyed some special times that I will share if my “guest artist permit” is extended.

In the meantime, I want to stress our appreciation to all Bret’s readers for the humor, insights, prayers, love and support. For those who read but prefer not to comment, we have felt your presence.

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