“It was twenty years today” was the famous quote from the Beatles Seargent Pepper’s Lonely Hearts Club Band. My twenty years ago today has a slightly different meaning.

This is the day (2/19/04) that I was released from the hospital…for the second time. I was back in the hospital to have a re-resection I might add.

Two weeks earlier I had the most extraordinary five day stretch of my life (1/31/04-2/04/04). Day four was the day that I had a cancerous brain tumor resected from my head. The surgery was deemed a success.  

This day had been scheduled since the beginning of January after making the appointment with the surgeon, Doctor Ghassan Bejjani.  

Let me explain the five-day period. Day one was the craniotomy…cracking the egg. Day two was motor mapping…testing that all bad and only bad tissue would be removed. Day three the surgeon had another surgery. Day four was the surgery, and day five I was released from the hospital.

Yes, I was released from the ICU to the car to have dinner at home that night. I don’t know if he had that much confidence in me or himself.

It was great to move on and deal with the next step. However, the next step was a step back. I went back to get the staples removed and was told “it’s worse than we thought”.

And that is why I had that second surgery. That original surgery was not quite the success as first thought. But the second one was.

Now I find myself in a different situation. I had chosen to do radiation. I felt that this was my only choice for long-term survival. Then I could deal with the consequences from the long-term effects of not only radiation damage, but from the damage of the surgery itself.

Say 19 years down the road.

We have known that I have been incurring brain damage due to the radiation over time. I have not shown much outward or noticeable signs of this, but I can tell.

Throughout my 20 year-stretch I have had what I would call micro neuro episodes. My neuro oncologist extraordinaire, Doctor Lynne Taylor says to just call them what they are… mini seizures.

During a visit with her several years ago, she had suggested that I begin taking anti-seizure medication. At the time, I did not due to the cost of medication and the infrequency of these events. The severity also seemed to be in check.

A year ago, however, I experienced four of them in only a two-week time period with two of them having a slightly higher impact on my body. I have never lost consciousness and know what is taking place throughout.

I have learned the feelings in my body prior to the event and I am typically completely over them within two hours. Sometimes they are not very intense but occasionally they were, and the overall feeling is that it was time for a change.

I had a visit with Doctor Taylor and began taking anti-seizure medication on 1/21/23 and since then, have been dealing with the repercussions of the events and of the side effects of the medication.

It took some time to get the level of medications figured out, a process I am still working on. But now I have been stable for over four months.

I have looked at it this way…there really isn’t much of a difference between an injury and an acute medical situation…many times it takes four to six weeks to heal or correct itself.

But with a long-term chronic situation…the longer something goes unchecked (19 years) the longer it’s likely to take to correct.

And if we go back to the injury analysis…maybe a young guy would be as good as new in four to six weeks…but I am no longer a young guy.

I do feel young for my age but it’s not the same as actually being young.   

Many of you know what it is like to go from no medications to starting a ‘rest of your life’ daily regimen. It can be problematic getting all the moving parts to align.

I know that I am likely to be ‘playing’ with medications a little bit. But I can even go for a compromise…It would be nice to not address this as an ongoing part of my life.

And I do not underestimate the power of those 20 years in my rear-view mirror.

I am not writing this because I need to get it off my chest. I have already been through that, and it is a good idea even if you write it to yourself.

I am doing it because I feel that others may need to know that they are not alone in their struggles.

Stay strong!

Cheers,

Jack

_{Not Just Another Day!}

_{For most of you … November 2nd, 2003, was just another day. Maybe you watched football on TV…or even went to the game. But even if your team won…I don’t think that you can remember the details of the day as well as I do.}

_{For me…It was not just another day. A group of us were gathering in Seattle for the Seahawks vs. Steelers game when my life changed forever. As I was trying to speak to my friends…I became unable to talk…and I passed out. When I woke up in a hospital bed with a bad headache, I didn’t know why I had passed out…but I vaguely remembered something with my speech… and not being able to talk.}

_{I was introduced to my new reality when a young doctor escorted me down the hall as she told me that I just had seizure. We came to a room full of images. The images were from an MRI of the brain…my brain. As an added bonus…the images revealed that I had something inside my head that didn’t belong there…a tumor.}

_{The feelings associated with this announcement are difficult to explain…shock and disbelief are a good place to start. Eventually these emotions were followed by denial…resignation…and eventually…resolve.}

_{I was actually fortunate that I had the seizure to alert me of the tumor’s existence- I may be alive because of it! There is a good chance that without that moment in time, I may have lived with an unknown tumor until it was too late.}

_{Every time that I reflect back to this part of my life, I pass by many pit-stops along the way. I can’t simply jump to the beginning of my journey without visiting some of the memories associated with this moment in time.}

_{I remember the uncertain path that I was to follow to get where I am today. It was hard to imagine that I would still be here today…16 years later. But I did imagine…and I decided that that my best course of action was to manifest success.}

_{I went through three different surgeries…direct placement chemotherapy…and finally radiation. It was time to begin my post treatment life…to see a future. I celebrated my last day of radiation, June 3rd, 2004, by going backcountry skiing. Not only was it great fun…it represented living my life as if nothing had changed.}

_{As I moved forward, I would see periodic news stories about a high-profile person like politicians, sport stars, and rock stars being diagnosed with this insidious disease. I became closer to them because of this connection…and followed their stories. It’s not that I liked them more than I had before. It’s simply that we now had an unwanted kinship. I still have a highly personal reaction when I hear the news of a celebrity or someone in our community is diagnosed.}

_{Treatment is not highly successful and every time someone falls…it has an effect on me. There are certainly success stories…and this also has an effect on me. When I first asked myself ‘is this survivor’s guilt’? I came to the realization that it was survivor’s relief…and even survivor’s disbelief. I learned to move past any feelings of guilt. They did not die in order for me to keep living… I am simply a fortunate survivor.}

_{So I take this day to think about all of those who have been diagnosed with brain tumors since that day…and I share my story for those who may follow me in this journey. When we acknowledge the survivor’s…we give reason for hope.}

_{It may seem odd to celebrate the anniversary of this moment in time. But this was the beginning of my new reality…and my path forward. It is my intention to celebrate this path forward for years to come!} 

Thank you to all who donated to SOE in honor of Lillian “Dolly” Ganster who passed on August 10^th. Dolly was the mother of SOE founder Jack Ganster and instilled a love of the outdoors in Jack at a very early age. She will be greatly missed, but each SOE outing will be a tribute to this amazing woman.

We truly want to thank all of you for support, both thoughtfulness and with donations. As one gifting person said, ‘In memory of Dolly Ganster and all of the love that she brought into this world.’

SOE has received over $1,000 from family and friends…for our family and friends program. Even in her passing, she was giving.

Thanks, again to all those who contributed.

Jack and Dolly enjoy a laugh when she delivered many delicious calories during his 1985 Appalachian Trail Thru-Hike

Since 2007, the University of Pittsburgh Medical Center has been publishing a micro-magazine called Headway. The magazine is directed towards news on advances in the prevention, detection, and treatment of head and neck cancers. Part educational, part informative and part inspirational. I was asked to contribute my ‘Becoming a Survivor’ story. I am honored to be featured on page two in the Summer 2020 publication.

https://hillmanresearch.upmc.edu/wp-content/uploads/Headway-Summer-2020.pdf?fbclid=IwAR3KZ73HMNGDLv2cNxyDZtsFMGO5aTYpAEk4gVhx9rfsgXmss_brNaDaD5U

For most of you … November 2^nd, 2003 was just another day. Maybe you watched football on TV…or even went to the game. But even if your team won…I don’t think that you can remember the details of the day as well as I do.

For me…It was not just another day. A group of us were gathering in Seattle for the Seahawks vs. Steelers game when my life changed forever. As I was trying to speak to my friends…I  became unable to talk…and I passed out.

When I woke up in a hospital bed with a bad headache I didn’t know why I had passed out…but I vaguely remembered something with my speech…and not being able to talk.

I was introduced to my new reality when a young doctor escorted me down the hall as she told me that I just had seizure. We came to a room full of images. The images were from an MRI of the brain…my brain. As an added bonus…the images revealed that I had something inside my head that didn’t belong there…a tumor.

The feelings associated with this announcement are difficult to explain…shock and disbelief are a good place to start. Eventually these emotions were followed by denial…resignation…and eventually…resolve.

I was actually fortunate that I had the seizure to alert me of the tumor’s existence- I may be alive because of it! There is a good chance that without that moment in time, I may have lived with an unknown tumor until it was too late.

Every time that I reflect back to this part of my life, I pass by many pit-stops along the way. I can’t simply jump to the beginning of my journey without visiting some of the memories associated with this moment in time.

I remember the uncertain path that I was to follow to get where I am today. It was hard to imagine that I would still be here today…16 years later. But I did imagine…and I decided that that my best course of action was to manifest success.

I went through three different surgeries…direct placement chemo therapy…and finally radiation. It was time to begin my post treatment life…to see a future. I celebrated my last day of radiation, June 3^rd, 2004, by going backcountry skiing. Not only was it great fun…it represented living my life as if nothing had changed.

As I moved forward I would see periodic news stories about a high profile person like politicians, sport stars, and rock stars being diagnosed with this insidious disease. I became closer to them because of this connection…and followed their stories. It’s not that I liked them more than I had before. It’s simply that we now had an unwanted kinship.

I still have a highly personal reaction when I hear the news of a celebrity or someone in our community is diagnosed. Treatment is not highly successful and every time someone falls…it has an effect on me. There are certainly success stories…and this also has an effect on me.

When I first asked myself ‘is this survivor’s guilt’? I came to the realization that it was survivor’s relief…and even survivor’s disbelief. I learned to move past any feelings of guilt. They did not die in order for me to keep living… I am simply a fortunate survivor.

So I take this day to think about all of those who have been diagnosed with brain tumors since that day…and I share my story for those who may follow me in this journey. When we acknowledge the survivor’s…we give reason for hope.

It may seem odd to celebrate the anniversary of this moment in time. But this was the beginning of my new reality…and my path forward. It is my intention to celebrate this path forward for years to come.

The Crown Jewel of the Olympics

The grandeur of the mountains is evident throughout the entire 923,000 acres of Olympic National Park. The most spectacular example of all is Mount Olympus and the Hoh River Valley.

The moment I saw some old photos of this remote, glacier-covered peak, I knew that I wanted to climb it. I was a back country skier living in Vermont at the time, and the images of year- round snow and sharp rugged peaks drew me in like a moth to a flame.

Blue Glacier, Olympic National Park

…Continue Reading Mount Olympus

I sometimes find myself tangled-up in my to do list. I can’t seem to get out of my own way. Even now…13 years after finishing radiation following brain surgery(s)…I get stuck in neutral.  Yes…this last sentence holds clues to some percentage of my problem. It is difficult to go through this sort of treatment regiment without some sort of brain damage.

All cancer treatments…all drugs…have side effects. Radiation and Chemotherapy are known to effect a brains’ ability to function at the highest of levels. We were not all dealt the same hand at the beginning of our life…and we are not playing with the same cards once we’ve been diagnosed. We do what we can. And with some effort…to the best of our abilities.

The transition from being newly diagnosed…then treated…then waiting to see a response…takes it’s toll. In these past 13 years I had plenty of ups and downs. Getting bogged down is a side effect of my life as a brain cancer survivor. So I take baby steps when necessary.

I have come up with a mantra of sorts. It’s kind of like mindful breathing. With my breathing…I can take a moment to slow down and breathe purposefully…feeling my body doing the simple task that we constantly take for granted. And why not? We’ve been doing it all our life…even before we knew we were alive.

But with consciousness comes added responsibility. As young adults we learn…it’s time to justify our existence…to make our own mark on the world. As cancer survivors…we don’t need to build anything for the world to come see…or win the Nobel Prize. We just need to do…what we need to do…to move forward.

DO SOMETHING!

DO SOMETHING MORE THAN NOTHING

DO SOMETHING TO GET MOVING

DO SOMETHING TO MOVE FORWARD

DO SOMETHING THAT ACHIEVES A TASK

DO SOMETHING PHYSICAL

DO SOMETHING CREATIVE

DO SOMETHING THAT YOU LIKE

DO SOMETHING THAT MOTIVATES YOU

DO SOMETHING THAT HELPS YOU

 DO SOMETHING THAT HELPS OTHERS

DO SOMETHING THAT INSPIRES YOU

DO SOMETHING THAT INSPIRES OTHERS

DO SOMETHING THAT MAKES YOU FEEL GOOD

Don’t expect to manage all of these at once…but there are many possible combinations. Give it a try. Do something!

When I moved to Port Angeles, Washington in 1991 I carried the memories of witnessing game two of the Stanley Cup Finals. This was the game that Mario Lemieux made the iconic goal against the Minnesota North Stars that changed the series and lifted Mario into legendary status with his performance. What we saw as impossible to achieve…he brought to reality via pure will and creativity.

In 1993 he was living his life as the hero and savior of Penguins Hockey after leading his team to back-to-back Stanley Cups Titles. He was having another strong year, crushing the scoring competition with his incredible play.

Then…he was diagnosed with Hodgkin’s Disease…Cancer. Although it is a less problematic type of cancer…with a five-year survival rate today of 81 percent…it is still cancer. With treatments that included radiation.

On March 2^nd, 1993, Mario finished radiation and booked a charter flight in order to play that night in Philadelphia. He scored a goal and assisted on another. Amazing…

In November of 2003 I had a seizure to alert me to the fact that I had something inside my head that didn’t belong there, a brain tumor. With my confidence in the medical facilities in Pittsburgh and the support of my family, I chose to have surgery there.

After hearing ‘it’s worse than we thought’ in regard to the level of concern the tumor presented, I opted for an advised second surgery. Everything went well and I am thankful for the level of care that I received.

I received my radiation treatments when I returned home to Washington. As my treatments were wrapping up, I remembered Mario’s story and thought about the possibility of using it for motivation.

It was in that tradition that I chose to do… what I wish I did as well as Mario played hockey…ski. We typically have snow in June, and I thought ‘why not?’.  With this inspiration I skied the afternoon of my last day of radiation with several friends…and had a blast.  On June 3^rd I was able to ski on the 13th anniversary…a yearly tradition. (conditions permitting)

At the bottom of the run…Klahanie Ridge. It was like skiing inside a ping-pong ball…but hey…it was skiing.

Mario went on to do all he could to keep the Penguins in Pittsburgh as part owner and now they have the most successful team in the league. (Five Cups!) He also created the Mario Lemieux Foundation. He is now 22 years cancer free and devotes much of his time at the Foundation raising funds for to help reach the ultimate goal: a cure for cancer.

His approach to hand that he was dealt again motivated me. I have been a lifetime fan of using the natural world as my playground and sanctuary. I had years of experience in outdoor recreation and leading others to expand their appreciation of our natural world.

With this history I created Survivor’s Outdoor Experience. Our programming is directed towards the ultimate goal of giving participants strength, hope and a sense of the future.

It is a personal journey to fight this disease known as cancer and we all have our path. Mario used winning the scoring title as his motivation (he did win it) and I used it to get back to normal as mine. With the inspiration of his story.

Thanks & Congrats, Mario.

This year I added a bonus day and went to Mt. Angeles on 6/4/17

Mount Angeles

A Survivor’s Journey

As a person who has spent the last ten years willing to share my experience about life after diagnosis, it’s still difficult to simply say “I am a cancer survivor.”  So much goes into this statement.

It’s been an incredible journey and I have seen and experienced so much during this period in my life-a period that almost seemed out of reach.

At the time, I was strong and healthy, Lance Armstrong was still a hero, and the Livestrong Foundation was just gaining traction. Since then, I’ve attended a conference at their headquarters in Austin, Texas, started my own program (Survivor’s Outdoor Experience) and have witnessed Mr. Armstrong’s meteoric fall from grace.

As much as I deplore this man’s constant flippant denials and bully-style behavior, I can totally relate with him about how rewarding it is to help others through simply surviving against the odds-the most basic form of leading by example.

This is why share my story. It goes beyond this simple idea of outlasting the disease- I felt like I would, but I still feel like it’s a temporary victory. Even though it’s been ten years and multiple MRI exams later and all the evidence suggests that I should declare victory. …Continue Reading My 10 Year Journey