Pancreatic Cancer Five Years Later

Five years ago, I locked myself in the bathroom in my bedroom and quietly sobbed to myself, not wanting my husband or daughters to hear me cry.  I was looking for stories of hope following my pancreatic cancer diagnosis but I was not finding anything optimistic. Every blog I found had a very limited number of entries because the authors, once full of life and hope, had all passed away in a matter or weeks or months.

It was surreal. I was so young, healthy and athletic. How could this be my diagnosis? I did not think it was possible for any illness to have such an abysmally low survival rate.

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My last FB post before my surgery for pancreatic cancer in 2013.

Where are the Survivors?

I searched the internet far and wide for information about young, healthy, fit, strong people who beat the odds and survived long-term after a pancreatic cancer diagnosis. I found people like me, who were young, athletic and optimistic about their survival. They all started writing following their diagnoses intending on sharing a story of hope and survival.

Not one of them was still alive at the time I found their blogs.

The one that finally broke me, sending me to find a space where I could cry alone and away from my family, belonged to a young man who was a cyclist. I looked at the sidebar of his blog and saw entries that continued for about three years. I was immediately ecstatic, thinking I had found ‘the one’, the long-term survivor who was able to carry on with his life after pancreatic cancer.

After reading all of the way through every entry, however, I realized that he, too, did not survive. His wife wrote the more recent entries after his passing, keeping his memory alive as she advocated for more pancreatic cancer awareness.

My heart broke for this young couple I did not personally know. I cried for them and I cried for myself and for my family. I was afraid and felt completely isolated and alone. Did anyone actually survive pancreatic cancer? If so, I wondered, where are the survivors and how are they doing?

My Promise

In that moment, I decided I did not want other people to feel as scared and lonely as I did. I made a promise to myself that I would write about my experience so that somewhere down the line, someone facing pancreatic cancer might find me and see that I AM STILL HERE. I survived.

Five Years

On November 18th, I officially hit the five-year cancer-free mark. I have had scares but no recurrences. My oncologist released me from his  care on November 19th, 2018.

I am one of the lucky long-term survivors. I have no idea why I was fortunate enough to survive, but I did. As I have always said, I am not special; I am just lucky.

I wrote the blog for pancreatic cancer charity Project Purple for several years. Through that work, I had the honor of listening to so many people’s pancreatic cancer stories.  Family members have entrusted me with their excruciatingly painful tales of loss and grief. Patients have spoken with me about their health, their fears, their financial woes and many other topics. I hold all of these stories sacred in my heart. Every person, every story matters. You matter.

Through other avenues, I have been fortunate enough to become friends with other pancreatic cancer patients. I now know there are other survivors. Our community is small, but it exists.

Still, I have mourned the loss of way too many whose lives have been cut tragically short. Every single death is personal, leaving me feeling gutted, even after all of this time.

I think about the gravity of this illness and the pain and suffering it brings to so many every single day.

Hope for the Future

Still, there is hope for the future of pancreatic cancer. When I was first diagnosed, the five-year survival rate was 5%. Now, five years later, it has inched its way up to 9%. This is still unacceptably low, but there are reasons to be optimistic. Pancreatic cancer is getting a lot more attention than it was even five years ago, and there is promising research for new treatments and early detection. There is a very long way to go, but the medical and scientific community is working incredibly hard to help patients now and in the future.

My Promise Kept

There are times I wished I had not put my story out so publicly. Cancer and the aftermath is fraught with many physical and emotional challenges. But I have never forgotten that day five years ago when I felt so alone and frightened.

While sharing my own experience, it was extremely important to me that I show the full range of emotions and feelings of my cancer story. While I believe a positive approach to life is helpful, I have always felt that it is unhealthy to deny the full range of human emotion.

One thing I have clearly seen over the past five years is how much difficulty our society has with emotions of fear, anger, and sadness.  No one wants to live in a place of anger or fear for an extended period of time, but those feelings are real for everyone and it is important not to deny their existence. It is appropriate and important to allow yourself to experience feelings and thoughts that are not always positive. If someone comes to you and says, “I am struggling”, please acknowledge and validate the reality of those feelings. It is incredibly isolating to express a moment of vulnerability and have people respond with, “Just think positive!” This applies to many situations in life, not just a cancer battle.

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Dogs provide some of the best comfort.

In any event, I have shared the good moments and some of the not-so-good moments over the last five years. I have done my best to honestly portray many of the important moments in my pancreatic cancer story. Cancer does not just come into your life and leave you an unchanged person. You will never fully be the person you were before cancer. That is the reality but it is not necessarily a negative. I have made some positive changes in my life as a result of having had cancer. I believe my relationship with my husband and my children is deeper and richer than it was before I was sick. I believe I live a more authentic life than I did when I was younger. But still, I mourn the toll this has taken on my body.

My goal with this blog originally was to help a future version of my newly diagnosed self find a long-term survivor. A survivor who has continued to live, laugh, cry and most importantly, love. A survivor who gives the next newly-diagnosed patient the permission to be afraid and to ask for comfort and compassion. A survivor who has dared to attempt some cool stuff post-cancer, but who doesn’t gloss over the difficulties of a very rapidly changed body.

Hopefully someone, somewhere has searched pancreatic cancer stories and found some comfort in my writing.

I am still here. I am alive. These last five years are part of my story, but they are not the end of my story and they are not my only story.

And with that, stay tuned because I still have lots of crazy shit left to do.

 

Finally, today is the last day of November, which is pancreatic cancer awareness month. I I recently recorded this podcast with Dino Verrelli of Project Purple. I talk about my cancer experience as well as running and the lessons I learned during my treatment. Click below to listen to the episode.

 

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Running, Not Running & why I cringe over #NoExcuses

Dear runners and fitness enthusiasts:

I am happy for you that you were able to set and finish goals. I enjoy seeing your ecstatic finish line photos. I even enjoy seeing the pictures of the fabulous places you have trained. But I am begging you to please stop shaming people for not being as physically or emotionally able as you currently appear to be. For the love of God, please stop with the #noexcuses and #nolimits crap. It is damaging and harmful and unfair in ways you may not have ever considered.

Running Saved My Life, but I am no Badass

The last two years (really five, but particularly these last two) have been very rough. In 2016, I ran Run Rabbit Run 100. Despite injury, I finished the race hours under the official cutoff time. Oh, the year before that, I ran the Bryce 100 (second female-2015). In 2013, I ran the Vermont 100 (10th female). I was sidetracked from November 2013 until June 2014 for pancreatic cancer surgery and treatment. Through all of the cancer treatment stuff, I kept running. I even ran and finished a 25k with my husband. I was not fast, but I pushed myself so hard I thought I might pass out. In the fall of that year, just 3.5 months after finishing chemo, I finished the Bear Chase 50 mile race.

I was never a badass. Running was never about impressing others. I ran because it was what was in my soul. Running was what connected me to myself. More than once running helped lift me out of a significant depression. I have said many times, “Running has saved my life, both physically and emotionally.” I chased ‘the high’ because it was the natural way of keeping me out of the darkest depths of the lows.

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Taking a moment to enjoy the beauty of the wilderness with Willy

The Reality I Cannot Fully Face

After 21+ years as a runner, unless something changes dramatically and quickly, it may all be coming to an end. I am fighting it, but I am on my way to becoming an ex-runner. Psychologically, I am not quite there yet. I keep hoping I will not have to officially hang it up.

When I find myself looking at race photos or reading a friend’s race report, I often catch myself thinking, “I could totally do that ultra!” I get momentarily excited and then I remember where I am physically. Currently I am lucky if I can string together two flat miles of ‘jogging’ once or twice per week. Some days I am able to walk/jog a bit around the neighborhood. When I go to the mountains, I am now more of a hiker with MAYBE a tiny bit of running thrown in here or there. It is in no way related to a lack of trying, grit, or determination.

None of this has happened by choice. I am not making ‘excuses’. I spent 2016 recovering from injury and then had hip labrum repair surgery in 2017. The surgery went well. I rehabbed just as I was told to do. I started running again. I even hiked/ran in the mountains and was thinking I was totally on the way to a full recovery.

A weird thing happened along the way, however. Just prior to the surgery, I was sick for months. I had fevers and a severe cough that would not go away. I had many days where I could walk my dogs around the neighborhood for a mile or two but then I had to go home and go back to bed.

Following my surgery, other problems cropped up. I could not sleep. I was diagnosed with a neurologically-based sleep disorder. I had no energy. I became dizzy and uncoordinated. I took several bad falls.

 

I even fell on the sidewalk in the neighborhood, breaking my wrist. My occasional migraines turned into an every day occurrence.  I experienced excruciating Occipital Neuralgia.

Pain consumed my body. I had a minor foot injury that became disabling. Then the neck and shoulder pain started. I have pain on the ischial tuberosity on the ‘good’ side of my pelvis. There is wrist pain from the wrist break that will not heal. I have spent a great deal of time and money over the last several months at neurologists and orthopedics doctors. I have a sleep disorder, neurological problems which are not entirely clear and inflammatory arthritis. I am still in the process of trying to get some of this all figured out. But I live with physical pain every single day.

Ex-Runner

I am grieving with the loss of my ability to run even very short distances consistently.  Running was never about the glory of a race. It was certainly not about winning anything, because if it was, I would have thrown in the towel long ago. I never needed pats on the back or kudos from anyone. I did it because I needed it. I needed running to make me feel alive and to keep myself from diving into the depths of depression. Running was the part of me which made me believe in myself. I learned I could do things I never thought possible when I laced up my shoes and hit the trails.

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Summiting Mountains with Willy

For 21-plus years I ran through everything. I ran through pregnancy. I got up at the crack of dawn to run when my kids were babies. I pushed baby joggers for 10+ miles at times. I spent months on end running indoors, bored out of my mind, on a treadmill when that was my only option. I ran with migraines. I ran through cancer and chemotherapy. I ran through divorce and the aftermath of losing and regaining my sense of self. When I met Steve and we started dating, we fell in love as we ran together.

For most of my running life, I ran every single day, rain or shine, whether I felt wonderful or whether I felt like death. I did not make excuses. I pushed myself outside, figuring if I did not feel better after 20 minutes, I could pack it in and go home. But, no matter how badly things were going, I made an attempt to at least start because I knew that often whatever ailed me would disappear after I started.

Then constant, intractable pain entered my life.

Pain changes everything. It changes who you are as a person and how you interact with the world around you. It changes how you see and think about yourself. Intense, long-term chronic pain forces you to alter your life in ways that you never could have previously imagined. Chronic pain literally changes the wiring in your brain. The effects of chronic pain should never be underestimated or dismissed.

#Noexcuses Philosophy does Harm

Since I was always the person who thought I could just mentally tough out anything and work through it, I thought I could just tough my out of my current physical issues. I looked at social media posts of other runners and the #noexcuses or #nolimits people and wondered if I had gotten soft or weak. I thought if I just got out and did it, my pain would fade away and I would be back doing ultras in no time.

I quickly learned I was doing more harm than good to my body. I have never thought of myself as weak or wimpy or a whiner. But the fact that I could not mentally force myself to do things that were now excruciatingly painful sent me even further into an emotional and mental tailspin. I thought I was weak and a failure. If everybody else can get out there and do this, why can’t I?

Sadly, I had to repeat this cycle in my head several times. In fact, I am pretty sure I am STILL somewhat stuck in this cycle.

Heizer with Willy

Shame, Isolation and Loneliness

I cannot meet with my running friends most days. I get very stressed when I make plans because I never know how I will feel when I wake up in the morning. Some days I could probably go for a short jog, but other days, I will struggle to make it 1.5 miles around my neighborhood just so my dog can go to the bathroom.

I warn people, “I am really, really slow” and even though they say that is OK, I watch them disappear up the trail ahead of me. So I rarely meet anyone anymore. It’s too hard for me and I hate holding people back. The irony in all of this is that even when I was young and relatively fast, I ALWAYS went the pace of the slowest person I was with. ALWAYS. I never left anyone behind and I am really glad that I was instinctively that person. #NoRegrets on that one.

I have isolated myself. I miss hitting the trails with people I love but I cannot trust my body to do what it once did. It’s embarrassing and difficult on every level, but I know I have to just do what I can right now. Some days it might be a 12 mile hike. Some days it is a short walk with my dogs. But it is simply too stressful to try to keep up with people who are faster when I simply am unable to go their pace. And, really, I have found all of this too difficult to explain to people. I am not really sure what to say or how to explain things because I do not fully understand it all myself.

I would love to find an alternative activity that could help me chase the endurance high and feel better about myself. However, swimming and rock climbing are out. Biking is out….I am not sure what could be ‘in’. Nevertheless, I am still tough. I am getting out and doing something, no matter how small, every day. I would love nothing more than to be able to get out and run long, but I do not yet know if that will be a possibility ever again.

Tonia Willly Rosa

Celebrate Yourself while having Empathy for Others

So, dear runners, please know how happy I am for you as I watch your successes and your joy. I used to BE you. I used to be a runner who relished running in the mountains for 6, 10, 12 or even 31 hours and several minutes. It was amazing. I have so many wonderful and fabulous memories from all of the good times and I truly love seeing your happiness.

But, please understand that at some point your body may fail, too.  It could end in an instant or it could be slow decline from injury, illness, aging or all three. The #noexcuses line discounts the very real experiences of so many people. Maybe someone would like to train for a 100 but their job and family circumstances leave them with very little time and energy at the moment. Those aren’t excuses. Those are priorities. Maybe the time will be right at some point for those people, but maybe it won’t ever happen. That’s perfectly OK. I have never looked at people who prioritize other things over running ultras or exercising at the gym as failures, wimps or lacking in discipline or whatever.

Or consider this…maybe someone does not zero body fat and amazing abs because they are sick or pregnant. Or maybe that person is recovering from an eating disorder and they have finally started allowing themselves to enjoy food again. In my opinion, being able to find balance with food is healthier than living with a lifelong obsession over ever morsel that goes into your mouth (speaking as someone who lived with an eating disorder for years).

My concern for and dislike of the #noexcuses mentality is that it is full of judgement without understanding all of the facts or without extending empathy to others. It pushes people to do things they might not be ready for physically or emotionally (I cant tell you how many, “I just finished a 5k and am signing up for a 100 miler” posts I have seen on FB.)  #Noexcuses preys upon people’s insecurities. The message is “I am a badass and you are a weak person with no self-control”. We need to redefine what ‘success’ and ‘badass’ mean.

What does success look like? Maybe it is the guy who quit smoking and just walked a 5k. Maybe it is the woman who has been starving herself for 25 years but has now put on three pounds and stopped weighing herself multiple times per day. Maybe it is the exhausted parent of young children out pushing the double stroller while walking the dog. Maybe it is the person who has always been extremely hard on herself finally giving in to the need to allow herself time to rest and recover and eat a donut.

While I miss the long training runs and the reward of being able to run ultras after months and months of training, that is not the most difficult part in this journey. The hardest thing in the world is thinking I may not be able to get out to see the beautiful wilderness at all at some point. For now, my wish would be to simply hike five miles without pain.

So maybe, eventually, success can be found in the ex-ultrarunner who is very sad at losing her running identity and her place in the running community but who is doing her absolute best every single day to keep moving forward ever so slowly. Hopefully she can accept herself as she is some day, though I doubt the sense of loss and longing will ever be completely gone.

 

#chronicpain

A little jog during a lot of walking in the hills of Colorado

Time and Health

 

These last few years have shown me the precious and fleeting nature of time.  Sure, money makes life easier, but time and health are what we need most. We need time for experiences which give meaning to our lives. We need time to love and give to those who mean the most to us. We need physical and emotional health to be able to create those meaningful relationships and experiences. If you have neither time nor health, you will wish with every fiber of your being you could go back in time and change something, anything, to give yourself more of both.

For the latter part of 2016, I realized that I needed to take a step back from many things so I could take better care of myself. Last year was full of moments in time that were both joyful and emotionally draining. My oldest daughter graduated from high school. When I was diagnosed with cancer, one of my top goals was to live to see my daughter graduate. Luck was on my side. We both made it to this day. I was, of course, proud of all of her accomplishments and reaching this milestone in life. But I also knew it meant my daughter, my friend, would be leaving our home soon.

Growing Up and Leaving Home

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How do you go from holding a tiny helpless baby in your arms to saying goodbye to a young woman who is literally a part of you but also very uniquely and wonderfully her own person? But this is a parent’s job and we have known this all along. We who get to see our children grow and fly the nest are the lucky ones. Not every parent has that privilege.

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And though I heard many times, ‘The high school years go by so quickly!’ I now know in my own heart how true that is. I have 4.5 years left with my younger daughter. I plan to make each one count.

Summer

The summer of 2016 was full of bittersweet moments. I had the pleasure of traveling with Peyton to spend time with my family in New York State.

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I traveled to Montana to spend time with my husband’s family. Steve, Peyton and I spent time enjoying the beauty of Glacier National Park.

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Iceberg Lake

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Moving on to College

Through it all, I knew that our lives were about to significantly change. In August, we brought Riley to college. While I was excited for her to enjoy this next step in life, I felt like a piece of my heart was literally being ripped from my body. It was very apparent that all I wanted was more time with her. I knew we would talk and see each other again, but I knew it would never be the same. She had to adjust to being ‘on her own’ and we would shift to mostly being a group of three on a daily basis. I wonder when will be the first time she tells me she is not coming home for vacation or not coming home for summer. I wonder where she will ultimately end up living.

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Sisters saying good-bye at the end of their summer vacations.

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Saying goodbye to my baby on move in day.

As our car drove away, I waved to my daughter until she was out of sight, and then the tears came. I wished I could go back in time so I could hold her little hand, read her bedtime stories and play more games with her. As my daughters grow older and move on to the next phases of their lives, it is these little moments I wish I could experience again, because now all I have are photos and distant memories.

The Importance of Time and Health

We all tend to feel invincible when we are young. We are surprised, shocked even, when we first face our own health crisis. Though it feels like time is endless when we are young, we are mortal, after all. Time does not come to us in unlimited quantities.

Health crises come in different forms. We all know people who have died much too young from an illness. A long, slow protracted death from cancer cells ravaging the body. A sudden, shocking end from a heart attack.

Mental illness robs many of joy and fulfillment in life. It steals time and happiness from people in a more insidious way than a physical illness, but is often no less devastating. If the mental illness is severe enough, it can be deadly.

There are other health problems that may be not as deadly but can be equally destructive. As we age, we find out our bodies or our minds are no longer capable of doing some of the things they used to do. We may be forced to give up things we love to do. Eventually we may find we have problems with basic tasks or mobility. It seems cruel and unfair.

Growing Up and Growing Old

We watch our parents age and realize someday we will have to navigate the world without them. If we are lucky, we still call our parents well into adulthood asking for advice. We wonder why we live so far away now and wish we could go back and right some of the wrongs we feel responsible for.

We wake up one day and see our own wrinkles and gray hair. We experience the failings of our own bodies. Confronted once again with our own mortality, we wish we had more time. We wish we could go back and do the things with our young, healthy bodies that we can no longer do now.

All of this brings me back to time. Spend your time wisely. Spend it doing what is important to you. Spend time with the people who are important to you. This past year was exceptionally difficult at times and I found myself mentally and physically completely drained. I faced many difficulties that I did not want to discuss with others. The personal struggle too real and too raw.

Saying ‘Yes’ to Saying ‘No’

I have always been one who has trouble saying no. I don’t like to disappoint people. I feel like I should be strong enough to ‘do it all’. I spent days volunteering for events and then went home and had to lay in bed the following day because I developed a fever. I smiled and gave to others while taking away from myself and my family. I have always been a giver. I finally realized that what I was giving was physically and emotionally destroying me. I have my own battles that I am not done fighting. I need time and energy to take care of myself and my family.

For years, I spent so much time saying ‘yes’ to other people that I had to say ‘no’ to my own needs. While I do not do New Year’s resolutions, as 2016 moved towards 2017, I knew there was no choice. I needed to pull back and focus on my health and my family.

I have pulled back gradually and I know it was the right decision. I need to make 2017 the year of saying ‘no’ to things which draw my time away from my family and make it more difficult to focus on my own emotional and physical health. For someone who is so used to saying ‘yes’, this is not an easy undertaking. This is not a New Year’s Resolution. It is a gradual, but necessary, process. I have to treat it like my life depends on it, because right now, I feel like it does.

Time and health. Those are the things that matter. You don’t get second chances with either.

 

Run Rabbit Run 100

I had the opportunity to complete the infamous Run Rabbit Run 100 mile race this weekend. The course was both brutal and beautiful. The volunteers were absolutely fantastic. I was challenged, uplifted and beaten down at various points over the course of the race. There were many high and low points over the 31 hours and 19 minutes it took me to finish the race. Ultimately, what I remember most is the purity of the connection to the people on the course. When you are tired and cold and nauseated, you cannot hide who you are. You must be open and be both strong and vulnerable. You must rely on the kindness of friends and strangers to help keep you moving forward. In a world where we can be guarded and jaded, the experience of allowing all of the barriers to slip away and be really present in the moment and open to those around you is unique. When it all comes together, it is refreshing and life-affirming.

I signed up for Run Rabbit Run 100 way back in January, 2016. At the time, I was not really sure why I signed up, but as winter turned into spring, I found myself sinking into a depression. As the weeks and months of training marched on, I realized that spending time running in the mountains was what I needed to save myself. (You can read more about that here: https://mypancreasranaway.wordpress.com/2016/09/01/the-panther-or-the-rabbit/ )

In the past couple of weeks as I stared down a daunting 100-mile mountain race, I felt a familiar mixture of excitement and foreboding. Every time I mentioned what race I was running, people would respond, “Wow, that’s a hard course!” or some version of that sentiment. Looking at the course profile, it isn’t hard to see why Run Rabbit Run has a reputation for difficulty.

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In addition to the long, steep climbs and the significant elevation change, runners face extremely cold temperatures at night time. I had been warned that many people DNF due to hypothermia. I packed so much cold weather gear that my husband asked me if I thought that I was running in Antarctica. I know that anything can happen over the course of a 100 mile race, but I would not drop out due to not packing the right gear.

The race, which has a 36-hour cut-off, started on September 16, 2016. I had assembled a team of three adults and one teenager. My husband, Stephen, would serve as crew chief and would pace me for approximately thirty miles. Laura, who I had been Facebook friends with for years but had never met in person, surprised me by buying a plane ticket so she could come pace/crew me. She has ultra experience, but lives at sea level, so I was not sure how she she would feel with the altitude and elevation gain. She would run either 10 or 14 miles, depending upon how she felt. My friend Larry, who is a very experienced endurance athlete, would therefore do either 20 or 25. Peyton would be on hand to help crew and keep my spirits lifted.

I chose Run Rabbit Run 100 in part due to the race’s proximity to Colorado Springs. I knew we could drive up in a few hours and I figured it would be relatively easy to get people to come help crew and pace. In fact, there was a large contingent of runners from the Springs area, which made for a warm and welcoming environment.

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With Jenny and Denise.

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Tonia, Peyton & Stephen

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At the race start (Photo courtesy of Ann Labosky)

We started up the ski hill promptly at 8 am. The course sends runners straight up Mount Werner, gaining approximately 3,500 feet of elevation in the first 4.4 miles. Even though I did a lot of steep training runs, I had a moment of wondering what in the hell I had signed up for. By the time we reached the top of the hill, I had sweat dripping off of my face. Nevertheless, I knew that we would essentially be headed out on a net downhill for the next several miles. I chose to try not to think too much about what was to come later in the race, instead just opting to enjoy the scenery. I spent some time shaking out the nerves and chatting with people, knowing that it was very early and I had to keep the pace conservative to save energy for the big climbs that would come later in the race.

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Long Lake

The Long Lake aid station is at mile 10.8. I was still feeling good and the trails, which had been crowded up to this point, began to open up. We headed to Fish Creek Falls, a section which starts off with fabulous single track that becomes quite rocky and technical. I was running alone at this point, listening to music and enjoying the scenery.

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My sunglasses were bugging me a bit so I took them off. While I was messing with them, I tripped and fell, hitting both knees on rocks. I had only gone about 12 miles into the race. The hard hit stunned me and I had blood streaming down both legs. I walked for a minute, assessing the damage. Nothing appeared to be broken, so I shuffled back into a run, hoping for the best. From Fish Creek Falls, we ran along a four-mile section of trail back into Steamboat Springs.

Olympian Hall

I came down into the Olympian Hall aid station with a considerable amount of blood and dirt on my legs, but was thrilled to see Steve, Peyton and Laura. After stopping briefly to restock my gels, I moved on and headed up the next section of trail.

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(photos courtesy of Laura Falsone)

Cow Creek

As we moved on towards Cow Creek, the general consensus was, “Wow, this hill didn’t look this big on the course profile!” I spent several miles with a guy who shared some interesting stories from his years of dirt-bagging. Eventually, we parted ways and I ran into two runners I had been talking with earlier. Neither were feeling well at this point. One was injured and the other was sick to her stomach. I tried to give them both a pep talk, reminding them that they would likely feel good, then bad, then good, then bad, for the rest of the race. I think I was also trying to remind myself of that fact, because at this point my left knee, which had taken the brunt of the earlier impact, began to stiffen up. Every step hurt as I made my way down into the Cow Creek aid station. In addition, I had switched water reservoirs in my hydration pack and something had been digging into my back for the entirety of the section. I kept running with one hand between my pack and my back to eliminate any more damage.

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Arriving in Cow Creek with Peyton and Steve (photo courtesy of Laura Falsone)

Larry had made it into Steamboat, and several other local friends were at the aid station waiting for their runners, so Cow Creek felt warm and inviting. Even though I was in a lot of pain and wondering what the future would hold, everyone assured me that I looked strong and was running between a 27 and 28 hour pace. This was ahead of what I thought I could do, so that lifted my spirits. Aside from my knee and back, I felt OK, so I headed back of the aid station feeling hopeful for the rest of the race.

The next segment back to Olympian Hall was a rolling 12-mile section. My knee loosened up and I was able to run quite a bit. The sun was shining and the scenery along the single track was lovely. I was enjoying this section tremendously until my right hip flexor started to tighten up. I tried to adjust and loosen it up, hoping the pain would fade. We ran down the long steep downhill section back into Olympian Hall. Here the plan was to pick Laura up for the four mile uphill road section to the Fish Creek Falls trail head, where I would meet Larry for the night. However, shuttle issues forced a change in plans. Now Larry, who had been mountain biking but not running all summer, would be forced to cover nearly 25 miles with me.

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With Larry, headed off into the night.

I had been warned by many runners to grab warm clothing at Olympian, because as soon as the sun goes down, the mountains get extremely cold. Last year, the temperature on the course had dropped down to 8 degrees. I had been running in shorts and a tank top for hours, but threw on a long-sleeve shirt and grabbed another warm shirt, gloves and tights to put on as it got colder. We ran through town, and within a few minutes, I was hot. I stopped and took off my shirt in what would become the first in a night of many wardrobe changes. We ended up hiking much of the uphill back to the Fish Creek Falls trail head. From there, we headed on another six-mile climb back up to Long Lake.

Friendship and Inspiration

One of the things I love most about running ultras is having the opportunity to talk with people and hear their stories. People open up in a way they might not ever under other circumstances. While the scenery of a race makes the time alone special, the discussions are a big part of what makes the night memorable.

I first met Larry a few years ago when I happened to see him running close to where I live. He had on a Team Crud (Coloradans Running Ultra Distances) shirt, and I was just starting to get into ultras. I stopped him and asked some questions about races and CRUD. He humored me, answering a few of my questions. He probably thought I was a crazy lady, but that’s OK because I am forever thankful for that chance encounter.

I ran a few ultras after that meeting and then was diagnosed with pancreatic cancer. As I struggled to come back to my previous form following surgery and chemo, I stumbled across Larry’s blog. I read a post where he talked about some of his own medical issues. Feeling very much alone at the time, I wrote to him. I did not know if he would remember me, but he wrote back and gave me a pep talk. Even though our issues were different, I finally felt like someone might just understand what I was going through. He encouraged me to be patient and gave me hope that things might be different but they would get better.

During the last couple of years, Larry has been an tremendous source of inspiration to me. He is an incredible athlete who has completed the Leadman series several times, but, more importantly, he is an amazing human being who gives so much to others. Larry coaches a local high school mountain bike team, spends his free time volunteering to maintain local trails and still finds time to crew/pace friends at races throughout Colorado. I followed him as he ran Burning River 100 mile race as a fundraiser for the Akron Children’s Hospital (coverage of this story can be found here:  https://www.akronchildrens.org/cms/sharing_blog/deac461c4d31a0e9/)  Knowing how much slower I am than Larry is, I was extremely humbled and grateful when he said he would pace me at Run Rabbit Run.

Running Through the Night

Larry spent most of the night sharing stories with me. I was so wrapped up in his tales that I temporarily forgot to eat. This led to a blood sugar issue as we headed uphill on the Fish Creek Trail. As we picked our way over rocks and up the climb, Larry watched me stagger and stumble like I was drunk. Because he coaches a type 1 diabetic, he knew exactly how to remedy things. He made me eat a gel every 15 minutes until I started to feel coherent again. This is why I have a pacer. I knew I was in good hands and I am grateful he was there with me.

It was at this point that the temperature seemed to plummet. I was shaking, my toes went numb and I knew I needed to get changed immediately. I plopped down on the side of a swampy section of single track and pulled off my shorts. Larry, ever the gentleman, looked the other way as he dug through his pack for a jacket. Several runners came through as I was changing and asked if we were OK. This was a reasonable question, as we had recently seen several runners throwing up along the side of the trail. I just laughed and said, “Yes, I am just getting naked…You’re welcome.”

We headed up a long uphill section that took us back to Long Lake and then to the high point on the course at Summit Lake.I was once again freezing. I grabbed warmer tights, stepped about a foot away from a crowd at the aid and changed again. I just did not have the energy to be modest at this point. I started joking that it was goal to flash every runner on the course. We headed down a 2100 foot drop into the Dry Lake Aid Station, where I would be picking up Laura for a ten-mile section. Once again, my knee started to stiffen up. I was running when I could and hiking when I had to. It was frustrating, but I maintained my sense of humor about it. As it turned out, Larry didn’t have to worry about not having run much over the summer. I told him I wouldn’t break any speed records and I as right.

We got into Dry Lake, where we met Steve and Laura. I gave Larry a big hug and told him to get some sleep. Laura and I headed off onto a section that featured several bridges and most likely would have been beautiful during the daytime hours. Fortunately for us, there was a bright spectacular full moon and very few clouds in the sky. It was a beautiful crisp night and we chatted, alternating walking and running through this out-and-back section that was fairly crowded. We got to the Spring Creek aid station, got a bite to eat and then headed back to Dry Lake.

Heading to the Finish

When we arrived back in Dry Lake, Stephen was ready to get me to the finish line. We had roughly 30 miles to go at this point. I had just gone uphill for 4.5 miles and we were facing another 8 mile climb back to Summit Lake. I knew we would be hiking most of this and was fine with that. I was tired but my spirits were still high. We laughed and joked as we made our way up the jeep road. The moon went down and the sky began to lighten. I knew 27 and 28 hour finish times were long gone. I also knew that a sub-30 was pretty much out of the question. Normally, I would be upset to slow down as much as I did, but I honestly did not care one bit. My knee and groin had been hurting and my back hurt where my pack had rubbed it raw. I knew, however, that i had more than enough time to walk it in to the finish line if I had to.

tonia-running-at-rrr

When we finally got to the Summit aid station at mile 81.5, I was looking forward to jogging downhill for a bit. As I started to run, however, my right ankle hurt so badly that I immediately had to stop.I tried to jog again and just couldn’t do it. I felt the ankle and determined that it was probably just an angry tendon, so I resigned myself to walking. We walked back to the Long Lake aid station for the third time. I changed my clothes once again, putting on shorts in preparation for warmer temperatures.

The rolling but mostly uphill section to Mount Werner seemed infinitely longer than it actually was. I was getting passed by plenty of people but I did not give a second thought to attempting to chase anyone down. All I wanted to do was finish. I did not want to injure myself but I knew if I kept walking I would cross the finish line with minimal damage to my body. We rolled quickly through the aid station and then hit the 6.4 mile road that would take us to the finish line.

My husband is an amazing man who not only supports me in theory as I tackle these adventures, he is always there with me as I take those final steps to the finish line. Throughout the last miles of the race, I asked him to talk to me, but I could only give one word answers. This was the first time in my life that I ever got sleepy during a race. I became frustrated when I found out that he had told me I had 12 miles to go, but it was really 12.8 miles (Hey, it MATTERS!) Despite the fact that I was exhausted, I would never take my exhaustion out on my husband. He is the man who stands metaphorically and physically with me as I struggle through the most difficult times in my life.He is my rock and my hero and I come away from these races feeling more in love and connected to him than ever.

Dropping back down 3500 feet over the stretch felt painful and cruel. Many people remarked that they were unable to run at this point, and I was definitely in this camp. It was hot and I was hurting. Even Stephen was hurting at this point and wondering where the finish line was. Finally, we saw it.

finish-rrr

Peyton ran out to meet us and I gave Larry a hug as we made it down the road. I was completely spent physically but emotionally ecstatic. We got to the grassy section before the finish line and pathetically jogged over it.

finish-peyton

I got my 100 miler buckle and a beer mug for my efforts, finishing in 31:19. This was my slowest 100 mile finish by nearly five hours, yet I was not remotely disappointed with my finish time or placement. I was simply ecstatic that I finished the race and, despite some aches and pains, had a truly spectacular time.

rrr-finish

finish-chair

crew-rrr

tracey-megan-tonia-rrr

It was so wonderful to be greeted at the finish line by two of my favorite female runners, Tracey & Meghan.

After the race, we went back to the condo we had rented. I was so exhausted I could barely keep my eyes open. I was also too sore to sleep, so that made for an interesting night. When I awoke at 3 am the next morning, I was in a state of deep emotional happiness and gratitude. Yes, I was proud of my finish, but more importantly, I was filled with intense appreciation for all of the people who had supported me along the way. There is something so uniquely special about running through the night with people. I find that people become the essence of who they truly are over those long nighttime miles. We talk about things that we might never discuss under different circumstances. The stories, the images, and the memories will stick with me forever.

I spent the summer training for this race, often alone in the mountains for hours, trying to work my way through my own issues. Over those 31 hours and 19 minutes, I was grateful to be there in the midst of the outstanding scenery and to feel fully alive. I am thankful for the opportunity to dig deep, to work through the problems and to connect with other human beings. When people have asked me why I do ultras, I have often said it is because I enjoy the challenge. While this is completely true, more than anything, I embrace the chance to learn about not only myself but those who are around me. I am forever grateful for the selflessness of others, for friendship, for the shared stories, for love and for the opportunity to fully be my perfectly flawed self. After struggling for months with my own inner demons, a 103+ mile trek through the mountains of Colorado finally brought me the sense of connection to others I desperately needed

Finally, I had the opportunity to work with Paul Nelson and his amazing crew, John Uibel, Marina Polonsky and Shawn Brown, at Run Rabbit Run.

film-crew

They are putting together a documentary about the race and they chose to feature me as a ‘human interest’ story. They followed several elite runners as well as a few of us regular folks. I am honored to be a part of this project and am pleased that they chose to feature a variety of runners. Look for this to be coming out by the end of 2016!

https://www.facebook.com/paulmichaelnelsonphoto/?fref=ts

The Panther or the Rabbit

I last posted at the end of April, 2016, following a disappointing finish at the Cheyenne Mountain 50 K.  Throughout the spring and summer, I had plenty to say but simply could not give voice to my thoughts. These last few months have been filled with change, uncertainty, beginnings and endings. As the numerous stressors mounted, many of which I am choosing to keep private, I felt my suit of armor cracking. And so it was after several months of facing an ongoing series of challenges, I found myself staring over a literal and metaphorical abyss, facing an existential depression, wondering, “Why did I survive my cancer? Why am I here?”

Depression

After being told by so many  for so long that I was ‘strong’, I at first failed to heed the warnings. A bad day. A bad week. A stressful month. Finally, I could no longer avoid or ignore the reality. It felt like I was being stalked by a stealth black panther. At first, there was a sense that ‘something’ was lurking in the background. Then I could see glimpses of it, far off between the trees. It drew closer, watching and waiting, until finally it pounced, knocking me to the ground, with claws drawn and jaws wide open. Would it snap my neck? Would it rip my heart out? Would I, could I, fight back?

To the outside world, all was fine. I kept up appearances and took care of all of my responsibilities. But my contact with most people dwindled. Instead of reaching out, or calling for help, I moved more deeply into dark recesses of my inner world as I tried to make sense of what I thinking and feeling.

Finding a Way Out

In January, 2016, I signed up for the Run Rabbit Run 100 mile race. Located in Steamboat Springs, CO, the race is actually over 100 miles. The website says that it features about 20,000 feet or ascent and descent. In other words, it is quite challenging. After my 50k in April, I not only considered not running the 100, I contemplated never racing again. My foot had hurt for months. Maybe I was too old to keep running ultras. After facing cancer, surgery and chemotherapy, maybe I just needed to give myself a break and take it easy. Or maybe the truth was that I just no longer cared or had the drive to train. I specifically remember being out with my husband on what was supposed to be a flat 20-mile run. I had thrown in the towel and was walking down the trail saying, “I think I am done, not just for today but for good.”

My emotional state was chipping away at my physical well-being. Once an every day runner, I was now even questioning that part of my identity. I could jog a few short, flat miles, but I had lost my interest in going farther or faster.I had been dealing with foot pain and endocrine issues. Running just did not feel fun anymore. I always swore that when I stopped having fun, I would move on to a new activity.

Embarrassed and ashamed of feeling as I did, I kept my thoughts between my husband and myself. I have since learned that it is very, very common for cancer survivors (and survivors of other significant medical conditions) to go through a period of depression following their illnesses. We put everything we have into fighting for so long, that when the clear and present danger passes, the bottom can fall out on everything else. I felt frustrated with myself. I was alive and OK. Why did I feel the way I was feeling?

Running

As I questioned my own life, and struggled to make sense of who I was at this point in my life, I decided that I had to at least make a decision on something simple. Was I still a runner or not? Would I train for Run Rabbit Run 100, or would I close the door on the ultra chapter of my life?

A brief conversation with a friend helped point me in the direction I needed to go. She was discussing someone in her life who was facing a goal that would take sacrifice and work. She did not think this person would be able to reach her goal. The reason? “She isn’t willing to suffer.” The conversation quickly moved on to something else, but I came back to the line many, many times in recent months. I wondered, “Was I willing to suffer to try to reach a goal?” If I could endure the suffering, then maybe I could embrace the physical pain while I worked through my emotional pain.

I knew the only way I could answer this question was to go hit the hills.

north slope

Running Ultras

In April I wanted to quit racing. Within a couple of weeks, I fully committed myself to training for Run Rabbit Run 100. I felt that I needed it desperately. My life, physical and my mental health depended on it.

 

I have finished two other 100 mile races. The first time around, I just wanted to see if I could do it. The second time around, it was a very public experience. I wanted to have a big comeback from pancreatic cancer. I raised money for charity and wrote a lot about the training process. This time around, my journey to running 100+miles has been deeply personal. I have spent hours alone on the trails trying to discover just how much I am willing to suffer and endure. That probably does not sound fun, and it often isn’t. Was I trying to run from something? Was I trying to run to something? Was I trying to make the physical pain feel as intense as the emotional pain felt? The answer to all of these questions is yes.

elk

Along the way, I found that even when it felt like the world was cracking, shifting and imploding around me, I could eventually find peace in being alone, pushing myself, feeling my heart exploding out of my chest, and feeling my muscles and lungs burning. I kept myself alive and moving forward, with each challenging step.

As I learned during my battle with pancreatic cancer, sometimes it is the most difficult battles that we face that bring the deepest sense of meaning to our lives. Sometimes the battles take place in the public sphere. Sometimes those battles are internal, away from even our closest friends and family.

7 bridges

The hardest part of an ultra endurance event is usually not the race itself, but the training process. When you sign up, you commit to train and make sacrifices towards reaching your goal for months at a time. With each ultramarathon training cycle, I have learned something new about myself. This time around, I am redefining what ‘strength’ means to me personally. I am not afraid of suffering and sacrifice. In fact, there is a deep sense of satisfaction that comes through incredibly physically and emotionally demanding hard work. I needed to spend days, weeks, even months, exploring my own ability to endure, even embrace, suffering. In life, after all, we will suffer. Sometimes it seems like we have to endure way more than our fair share of suffering. But that is life. We all will face hardship and must learn how to endure pain. As I pushed myself, I knew if I could endure, I could survive not only the difficult trails, but what I was facing in my life.

Though it has not always been easy, my countless miles on the trail have been a much-needed time of learning and reflection. In times when I felt alone and lonely, I found peace, contentment and a sense of self-reliance on the Colorado trails. I did not find a quick fix to any of the issues I was trying to sort out. Instead, I found that sometimes what we need is not a solution or a quick-fix but trust and patience in ourselves and the process. Gradually, the laughter and joy began to emerge again. I learned that I can look out into the abyss and question my purpose but that does not mean that I will disappear into the depths and darkness.

dawn

 

 

 

 

 

 

 

Link to UltraRunning Magazing Article

 

Just wanted to link to an article that I wrote for UltraRunning magazine. This article is about a woman who is an inspiration to me. Junko Kazukawa is a woman that I had the pleasure of running with in 2013 at the Bear Chase Trail Race. In 2015, she did something that no one else has ever done before: she completed the Leadwoman series AND the Grand slam of ultrarunning in the same year. She is also a two-time breast cancer survivor. Most importantly, Junko is an all-around good human being. Read her story here:

http://www.ultrarunning.com/featured/junko-kazukawa-grand-slammer-leadwoman-2x-cancer-survivor/

Junko Grand Slam awards

Don’t Ever Get Sick: Insurance company woes

I recently received an explanation of benefits form from my insurance company showing that it would not pay my most recent oncology appointment. They did pay for part of the blood tests the oncologist ordered, but they refused to pay for the other blood tests. I am nearly two years out from my pancreatic cancer diagnosis. I have seen the same in-network oncologist all of the way through my treatment. This is just the latest in a long line of refusals as I have gone through this process of cancer diagnosis, treatment and recovery. It is cruel to treat patients the way I and so many others have been treated. Here is a look at some of the highlights from the past year.

In 2013, I switched doctors because my old primary care doctor was completely unresponsive to my complaints. My new doctor was fabulous and ordered some tests to determine why I was having some symptoms which concerned me. As we learned that I had a pancreatic tumor of some kind that needed to be removed, I started researching pancreatic surgeries. I learned that the mortality and morbidity rate for these surgeries continues to be much higher at hospitals that are considered to be low-volume for these procedures. I determined that study after study has recommended that patients have these surgeries only at high volume hospitals. Kaiser has none of the top PC facilities in my network. I found a highly regarded PC surgeon just one hour away. My primary care doctor did a lot of work seeking approval for me to see this noted surgeon, but my insurance company refused to allow me to go. My primary’s office fought this for a while, but the clock was ticking. My GI doctor said the tumor needed to come out ASAP. I did not have time to fight. I gave up and had surgery locally. In essence, Kaiser was willing to allow me to have surgery with no regard to potential outcome and without regard to the clinical evidence that high volume hospitals are safest for patients.

Prior to my surgery, the GI doctor thought the tumor was pre-malignant. When the tumor came out, part of it was found to be adenocarcinoma. I have always wondered if it was cancer all along or did it just become cancerous while we waited and fought with my insurance company?

Following my surgery, Kaiser would not allow me to go out of network to a pancreatic cancer oncology specialist. I received a message from a Kaiser rep telling me that she was not aware of any PC oncology specialists. There ARE PC specialists in this country. There are a couple of PC specialists an hour from my home, but they would not have been covered. When you go to a PC specialty facility, they give patients access to GI doctors, endocrinologists, and dietitians as part of a team treatment plan. Finally, two years after surgery, I have an appointment with an endocrinologist. I am beyond grateful for it, but wish I had not had to wait this long.

I saw and continue to see the same local oncologist. He ordered a PET scan. That was rejected. My oncologist made a referral to another specialist for an issue that has developed following treatment. That was also rejected.

Shortly after getting home from the hospital, as I was in the middle of a flurry of rejections for my pancreatic cancer treatment, I got a letter from kaiser reminding me that I needed a mammogram and a pap smear. While I agree that those tests are important, I resented the fact that my lady parts seemed to be of more importance to my insurance company than my pancreas, which was currently trying to kill me.

My OB/GYN ordered a breast MRI. That was rejected. It was appealed and rejected again.

Following my abdominal surgery, I developed some back issues. The body tends to become weak after being cut straight down the middle. I started seeing  a physical therapist. Even though I have had visits authorized, Kaiser has rejected payment on every single claim. I have called at least 8 times now, and each time I have been told, “We will pay this.” I have documented these calls along with reference numbers each and every time. Within a week, I get another EOB where payment is refused. If they did not want to pay for Physical Therapy, they should have rejected it out of hand, rather than authorize the visits and then refuse payment each and every time.

Yesterday, I got another PT rejection notice. In the same envelope, I got a notice of the refusal to pay my oncologist and for some of the labs. I called Kaiser again. The rep had no idea why the oncology appointment was rejected. She said there was absolutely no reason for it. Then she saw the list of PT rejections and thought that maybe the oncology appointment was rejected because they were just rejecting ALL of my services.

I have been exceedingly polite, but I have lost all patience with my insurance company. The powers that be demonstrated early on in this journey that they had no regard for actual medical science when I requested a surgeon that was out of network. What this comes down to is greed and a total disregard for patients AND for their doctor’s expertise. When you are dealing with an illness where the survival rate is 6%, there is no margin for error. Patients should be granted the leeway to go to specialized facilities. In fairness, the Kaiser representatives have all been polite and they seem to be doing their best to be helpful. I do not know who or how payments and authorizations are determined, but it seems that the new normal is simply to reject EVERYTHING out of hand.

There is a lot more to this story. I have a stack of rejection forms in a binder that I started back when this journey began in 2013. Kaiser was great when I was healthy. They are fine when all you need is a physical and a flu shot. Heaven help anyone who has them for an insurance company if they actually become seriously ill. When will this madness end? This is part of the gift of cancer. Not only do you have to fight for your life. Apparently you are sentenced to a lifetime of fighting for insurance benefits that you have paid for during the all of those years of good health.