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

 

 

 

 

 

 

 

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Cheyenne Mtn Trail Race 50K

I divide a lot of my life into ‘Before’ and ‘After’. We all have plenty of ‘befores’ and ‘afters’ in life, of course. For example, there is before/after marriage and before/after having children. For the past couple of years, it most typically refers to ‘before’ and ‘after’ my pancreatic cancer diagnosis. I last ran the Cheyenne Mountain Trail Race 50k in the ‘Before’ era of my life. It was April 2013, and I was gearing up to run the Vermont 100. I was in great shape and healthy and strong. I had been training hard for months. I ran a 5:48, finishing as fourth female, first master. I was happy and proud. I ran pretty much the entire race and finished feeling good about my fitness and my ability. That was ‘before’.

CM2013 podium

I had some misgivings about returning to a race that I had run in my ultra prime, so to speak, but I love the course, love the Race Directors, Tim Bergsten and Michael Pharis, and enjoy local running events. So, I signed up in January with every intention of training to get into hilly, ultramarathon shape. Unfortunately, a foot injury has kept me off of the hills and family commitments have forced me to cut my runs short. The training just has not been what it should be. I knew that I was physically incapable of turning in a good, competitive race effort, but I knew I could finish the 50 k as a training run.

I am going to subtitle this post as “The Race Where I Carried a Bullmastiff on My Back.” For every ultra I run, Peyton, my 13-year-old, makes me a little good luck charm. I have become superstitious about having my good luck charm. As I was running out the door to the start of the Cheyenne Mountain Trail Race 50k, Steve said to Peyton, “Did you make anything for mommy?” I had forgotten to ask and she had forgotten our tradition, but she did not want to let me down, so she ran off to her room and came back with this:

shrinky dink

It is a shrinky dink. She said enthusiastically, “It kind of looks like Greta!” I believe that it was actually a pug,  but for the sake of providing a sense of meaning, let’s just go with it and call it ‘Greta the Bullmastiff’. I stuffed the Bullmastiff in the back pocket of my new running skirt. Little did I know that I would soon feel like I was carrying an actual mastiff on my back.

The best part of local races is seeing all of the familiar faces out there and also finally getting to meet people I have heard about for a long time. I took a minute to snap a selfie with Kristin who I connected with on Facebook via a mutual friend quite a while back. This was a great way to start my day!

CM with kristen

Meeting Kristin (r) for the first time was a highlight of the race.

The Cheyenne Mountain Trail Races are deceptively hard, in my opinion. While the elevation gain is certainly not the most of any ultra, it is a relentlessly rolling course with plenty of roots and rocks. There are roughly 3600 ft of ascent/descent over the course of the 50k. When I am in shape, like I was in 2013, this course is tough but runnable. This year, with three flat 20 mile long runs under my belt, I knew I would not be able to run the whole thing. However, I also knew that if I didn’t make the jump to hilly long runs now, Run Rabbit Run 100 will not happen in the fall.

I started off running just fine. I was having fun and enjoying myself. I chatted with an amazing guy who is preparing to run his 9th Leadville this summer, along with Hardrock and a bunch of other races. We started talking because he noticed my Project Purple shirt and he had lost his brother to pancreatic cancer. It amazes me that everywhere I go it seems that someone has a connection to the disease.

Mile 8 begins a roughly three-mile stretch of significant uphill. I was hanging with my buddy Tim Gore and his friends at this point. We had switched to hiking and were talking, but my chest started to hurt. I was working way too hard and something did not feel right. I back way off and let them go. At mile 10, I seriously wondered if it was wise for me to continue. I thought, “My first DNF cannot come in a 50k, but I don’t want to be stupid.” I had not eaten anything up til about 10 miles, so I ate a gel and took a salt pill to see if I could right the ship.

Soon, I met up with Allisa. She was down from Lakewood and she was not feeling particularly well, either. So, we hiked the uphills and ran the downhills. We briefly got separated, but then joined up again at the start of the second loop. Unfortunately, I had to walk hills at the beginning of the second loop that I ran easily the first time around. I was still working way too hard. Finally, we parted ways and she continued on ahead.

The volunteers on the course were a highlight of the day for me, and they were all doing an amazing job of taking care of the runners at the aid stations. It was great seeing so many people I knew out there and hearing them call my name when I rolled in. I seriously needed those wonderful people to uplift  my spirits.

CM 50k

Coming into the Achilles International Aid Station. (Photo courtesy of Denise Flory).

tonia Aid station CM

Photo Courtesy of Tim Bergsten & Pikes Peak Sports.

I was particularly thrilled to see my good friend, Tracey, out on the course. I just love her. She popped up in seemingly the middle of nowhere and made me laugh. She was volunteering for the race after having completed the 10k. I was nowhere near the finish line in this photo, but I was so happy to see Tracey. It was a great excuse to run a few steps with my friend AND to stop to pee. What more can a girl want?

CM 50k tracey

As I ran the remaining miles solo, I listened to music, tried to stay on top of eating and drinking, and continued with my mixture of hiking and running. For quite a while, I felt at peace. I love company, but I also love being alone on the trails. I feel best when I can allow myself to fall into the rhythm of my own body. Once again, I turned things around for a bit, but then the fatigue returned..

Eventually the sun came out and it got very warm.I started losing my mind a bit out there, honestly. I was wearing a vest-style hydration system and I kept forgetting to refill it at aid stations. I just could not remember to check my water supply.  I ran out of water. I made stupid mistakes that I normally would never make. Finally, I closed in on the finish line. I had passed one runner in a late-in-the-game burst of energy and was running as fast as I could when Karen, a volunteer, ran up and said, “There’s a rattlesnake in that bush.” I thought to myself, “I came all of this way to get bit by a freaking rattlesnake. This is how it is going to end, isn’t it?” Karen told me she would stay between me and the snake but I also did not want her to get bit. What a bizarre way to finish a race! Fortunately, neither of us got bit.

CM 50 snake

Photo courtesy of Tim Bergsten

I crossed the finish line somewhere around 6:42 (by my watch. Waiting for official results to be posted). I immediately had to lay down in the shade for a bit after finishing. I talked with a couple of guys who had finished a few minutes ahead of me, then went back to the drop bag area to collect my stuff. I was feeling pretty emotional at that point in time. I knew I was not in shape to run fast today, but I did not expect chest pain and delirium. I wonder if this is some lasting effect from my chemotherapy. I wondered several times on the course why I was still running ultras. Bryce was so amazing last year, but Bear Chase was very rough and CMTR 50k was also quite rough.. I wondered if I could get myself in shape for Run Rabbit Run 100 in the fall. I mourned the loss of the body that could run a 5:48 on this particular course. I doubt that I will ever get that conditioning back.

I spent a couple of minutes talking to Race Director and all-around great guy, Tim Bergsten, at that low moment and let a few tears escape. “My running is so up and down these days and it feels so much harder than it used to be,” I told him. There is really nothing to be said. It just is. There are things I can improve (my fitness), but there are things that are different that will never be the same. This is the ‘After’. The reality is that I had major surgery and poison pumped through my body. It prematurely aged me. My body is changed and I am changed. I want to be gentle and forgiving with myself but I am having a hard time with that because I also really want to kick ass and take names. I am thankful to be here and be able to run at all, but this part of ‘before’ and ‘after’ is emotionally tough to deal with sometimes and makes me question a lot. I often say that if I had to choose, I would choose to go through what I went through because it changed me in a lot of positive ways. However, the lingering physical effects are something I could do without.

So, I carried the Bullmastiff on my back today. It was hard but I made it. I finished. I went through an incredibly full range of emotions out there. I think I experienced as many low and high points as I have in any 50 or 100 mile race. Those highs and lows are part of what I love about running ultras. There is something so intrinsically rewarding about problem-solving on your feet, digging deep and trying to find a way to turn things around when they are not going your way. I was not proud of my performance yesterday, but today I am very proud that I was able to fix my problems enough to finish.

cm 50 finished

 

 

No Air

I felt secure in my health. Invincible. I knew I was not immortal but I pictured a long, active, healthy life surrounded by people I love. I had a follow-up appointment scheduled with my doctor on a day when my husband had training for his job. He offered to change his training days, but I was so confident all would be fine that I told him not to bother. I would go alone. It would be fine. I would be fine.

As I  waited in the oncologist’s office, I had some mild pre-report jitters, which is normal.. The doctor came in and we engaged in a couple of minutes of idle chit-chat. I was waiting for the words, “Everything is fine. I will see you in three months.” But, instead, he opened his mouth and told me there was a lymph node near the celiac plexus that needed to be biopsied. As we looked through my scans together, he showed me another spot, this one on my liver. He emphasize that both could be nothing. However, he was recommending further testing to be sure.

As I listened to him, I kept a half-smile on my face, because I don’t want to show that I am rattled. But, I can feel the air leaving the room. I have a deja vu. I am back in 2013  when I first heard bad news about a tumor in my body that needed to be checked out further. I feel the same half-smile on my face, nodding in agreement to a voice that sounds a million miles away. No air. I hear the tumor board will discuss my case and let me know what will happen next. I think: I am alone. WHY did I come alone? Because I thought I was fine. I AM fine. But I thought I was fine in 2013, also. I don’t know what is real. I cannot trust my own instincts. I am afraid and so very alone.

I think, ‘What am I going to tell my daughters?’ I cannot tell them everything is fine, but I don’t want them to worry needlessly. After all,  I am going to be fine.

I leave and am, fortunately, able to speak to my husband. He sounds like I feel. A punch to the stomach. Fear. Disbelief. We are both desperate to be together, but are over 100 miles apart. I cry on a bench by the hospital elevator and I don’t care who sees me. I can’t drive. I can’t breathe. He has to return to class. I drag myself downstairs for the ride home but I just can’t do it yet. I sit on another bench and cry for 20 minutes, watching the rain pouring down outside. What am I going to tell my daughters?

Eventually, I pull it together enough to drive home. I talk to my parents. I talk with a couple of very close friends. I get home and sit on the floor, unable to move for 20 minutes. I am so thankful for Sadie, my Boston Terrier, who is licking my face. When my daughters come home, I tell them I need another test, but I do not elaborate. We have too little information. I am scared but I do not want to cause them unnecessary stress. There is no point. It seems cruel. They will know as soon as we know for sure one way or the other, good news or bad.

Sadie on my lap

The doctor calls the next day and says a biopsy is recommended. I vacillate between thinking I am totally fine and feeling fear that comes from seemingly nowhere. It consumes me on a visceral level. It does not seem to be triggered by anything in particular. I can only assume it is a response to the old wounds and fears coming back. One minute I am fine and the next I feel like the earth is swallowing me whole.

I cannot think about possible treatments. In fact, I don’t. I think about the test and just want to get through that. But when Stephen and I start discussing plans we have…races we have signed up for and trips we will take to see family, I become choked up. “But I have PLANS,” I think. “I have so much stuff that I want to do!”

The waiting is the hardest. Neither of us sleep well. We walk around, distracted zombies, trying to go through the motions and fulfill our daily duties and obligations. There is no time to emotionally deal with our personal crisis. We are so busy, we wish we had time to just sit and hold each other. When there is a moment of down time, our thoughts become our own worst enemies.

Steve & Tonia Santa Fe

I have the test. They biopsy enlarged lymph nodes. I go home and I wait and wait and wait. i try to figure out what it means. Why haven’t I heard anything? Is no news good news or does he not want to deliver bad news over the phone? I over analyze.

I actually think that I am healthy and fine. The logical side thinks I will be OK, but since I thought I was fine prior to my initial diagnosis, that leaves the door slightly open. Wednesday comes and I am supposed to see the doctor. A blizzard arrives, shutting down essentially every major road on the Colorado Front Range and I am stuck at home waiting to see if I will learn any news. I work and play games with my kids, but I am anxious and distracted. Finally, my phone rings and I get the news: I am fine. There is no sign of cancer in the lymph nodes.

There is relief and joy when I tell people, but after two-and-a-half weeks of living in some alternate universe, my own personal little time in hell, I am mentally exhausted. The news comes to me not as a surprise, but as a confirmation. I am fine. I knew it.

Today, as everything sinks in, I celebrate a new day of continued good health with a run. There is air. I can breathe again.

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Two Year Cancerversary

November 18, 2013. That was the day I had surgery for pancreatic cancer. I was one of the lucky ones. I could have surgery. Most people with my diagnosis cannot. Half of my pancreas and my whole spleen were removed and then shortly thereafter I went through 18 rounds of chemo. It was a long road that I have previously chronicled here, but I made it through. Most pancreatic cancer patients do not survive the first year. In fact, 80% do not make it to the one year mark.

When I planned my surgery, I did it strategically. In our house, November is a busy month. Our oldest daughter, my husband and my father all have November birthdays. I remember scheduling my surgery between my daughter’s 16th birthday and my husband and dad’s birthdays. I knew my illness cast a dark cloud over all of our celebrations that year, but I wanted to try to give enough time so that we could celebrate everyone else’s special day.

Last year, as the birthdays and my cancerversary approached, I admit that I thought a lot about my own anniversary. I was excited for the birthdays and so grateful that I got to be there for them, but I thought a great deal about my own anniversary and what it meant to me. I thought about everything that it signified and all of the stuff that we had experienced over that past year.

This year, as my cancerversary has approached, I have been aware of it, but in a significant mental and emotional shift, it has become less important to me. I have been more focused on other stuff in my life: Riley’s 18th birthday, my husband’s 50th birthday, my daddy’s birthday, my work and the race series that I am currently wrapped up in co-directing.

Still, it is an important anniversary and one that bears marking, because so much in our worlds changed two years ago. At this point in time in 2013, our worlds were rocked by my diagnosis. We did not know how much time I would have with my family. I think about the things that I have gotten to take part in over the last two years that I might not have had I not been so fortunate throughout my diagnosis and treatment. There have been birthdays. The girls were 10 and 16 when I was diagnosed. Now they are 12 and 18. Riley is legally an adult. Riley got her driver’s license. The college decision has been made (Go CSU Rams!) There have been homecomings and a prom. For Peyton, there have been karate belts earned, selection for a club volleyball team and a number of other successes in athletic and academic areas. She moved from elementary to middle school as I finished chemotherapy.

With Riley & Peyton on Riley's 18th birthday

With Riley & Peyton on Riley’s 18th birthday

Steve and I celebrated another year of wedded bliss. My family and I took an amazing vacation together, where I also happened to run a 100 mile race.

The family crossing the finish line with me!

The family crossing the finish line with me at the Bryce 100

Goofing around in Bryce Canyon after the race

Goofing around in Bryce Canyon after the race

I ran a full marathon and a half-marathon with Project Purple charity teams.

With Elli & Dino

With Elli & Dino in Lincoln, NE

With Jenny

With Jenny in her home state of NE

Several of the Project Purple Denver team members at the event.

Several of the Project Purple Denver team members at the event.

I ran a 50 mile race this fall at the Bear Chase Trail Race.

Lucky girl getting a hug from both RDs, Ben Reeves (l) and David Manthey (R). Notice the missing glass lens.

Lucky girl getting a hug from both RDs, Ben Reeves (l) and David Manthey (R). Notice the missing glass lens.

I ran a mountain race with my husband and friends.

Breck Crest with my honey

Breck Crest with my honey

With Debby, my friend since I moved to CO in 1999!

With Debby, my friend since I moved to CO in 1999!

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I race directed a charity 5k for Project Purple and continued working with our local club, the Pikes Peak Road Runners.

Having fun after the race!

Having fun after the Project Purple 5k!

With my PPRR Fall Series crew

With my PPRR Fall Series crew

We gained a new family member when we adopted Willy in January.

Our newest family member, Willy

Our newest family member, Willy

And last week, we said good-bye to the Grand Dame, Greta, who passed away..

She was a natural beauty

Greta, the Bullmastiff

I got to spend time with our wonderful extended family back east over the summer, which is something I never, ever take for granted.

Through all of this, I have met so many amazing and wonderful people that I simply cannot name them all. I do hope they all know the positive impact they have had on my life.

I often think in long-term thoughts now, which is something I did not always feel that I could or should do. I wonder what college will be like for Riley and what high school will be like for Peyton. I wonder what new adventures are on the horizon for Steve and me as our kids grow and prepare to move on to live their own lives independent of us..

Not everything is easy or joyous, of course. You never get through cancer without any long-term repercussions. I saw an endocrinologist recently and  we agreed that it was time to try a medication to help stabilize my blood sugar levels, which have been all over the place. I have not felt like my normally energetic self for a while now and I am hoping that this will help return me to where I used to be. I am still trying to make peace with this recent turn of events. I would never have been in this position if I had not had half of my pancreas taken out. While I know that I am so very lucky to be here, I am also frustrated by how I have been feeling. If pancreatic cancer had not chosen me, I would not be facing the health issues that I am facing now.

All of the above being said, I know that pancreatic cancer gave me many gifts, too. One of those gifts is the gift of friendship from so many people I would not have otherwise met. I will relay one story now because it demonstrates to me the serendipity of life. In September, I was running the Bear Chase 50 mile race. I was wearing my Project Purple shirt which says “Survivor/Running with half a pancreas” on the back. I passed a woman who was running the 50k (different courses that converge over time) and she asked me, “Why are you running with half a pancreas?” I told her my story and she told me that she was a type 1 diabetic. We chatted a bit, but eventually parted ways. I had hoped that I would see her again after the race was over, but I did not.

Three weeks later, I was working the Project Purple booth at the Denver Rock ‘n’ Roll marathon expo. Guess who stopped by?

With my new friend, Jen.

With my new friend, Jen.

Jen and I were meant to meet. I believe that fully in my heart. As it turns out, she had a friend who was battling pancreatic cancer. Sadly, her friend passed away shortly after we met in Denver; another tragic loss to this dreadful disease.

When I met with the endocrinologist a couple of weeks later, he told me to make friends with Type 1 diabetic athletes. I believe we met because we both needed each other at this point in our lives. She needed to see someone living beyond PC and I needed to meet someone who could show me that distance running and diabetes can co-exist. It all seems overwhelming right now but I know that I will figure it all out in time.

So much has happened in the past two years. I am so grateful that I am still here. I have been given the gift of more time with my family, and I have been given the gift of new and meaningful friendships. This year I look forward to seeing my eldest graduate from high school and go off to college, and to seeing my youngest enter her teenage years. Even though it has not always been easy, I am excited to see what year three brings!

You can read last year’s cancerversary remembrance here:

https://mypancreasranaway.wordpress.com/2014/11/18/remembering-on-my-cancerversary/

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.

Project Purple Denver Marathon & Half Marathon

I started this blog nearly two years ago when I was diagnosed with pancreatic cancer. I went searching the internet for blogs written by other young, athletic PC survivors and was devastated because it seemed that all of the others out there “like me” had passed away. I remember locking myself in the bathroom and crying one day when I found yet one more blog of someone who had passed away too soon from pancreatic cancer. That is when I decided to write about my experience. I wanted to be here, living a good life, healthy and strong, so that when someone else “like me” came along, they would have at least one long-term survivor who could provide some hope. This weekend, I found hope and inspiration in a whole new venue.

I love to run and I love to race. Perhaps even more, I love to help others find their love of running. I spent this weekend in Denver drawing inspiration from an amazing group of runners. Almost a year ago, I became involved with pancreatic cancer charity Project Purple. Since Project Purple is a charity that runs to beat pancreatic cancer, it was a perfect fit. What better way could I bring my two passions of pancreatic cancer advocacy/fundraising and running together? Since I became involved, I fundraised through Project Purple’s Pioneer Program, with the Bryce 100 being my goal race for the year. I directed a 5k race this past April in Colorado Springs. This weekend, I was in Denver for the Rock n Roll marathon and half-marathon with our newest Project Purple team. If you love to run and you want to become inspired, run with a team for a cause. You will find other people who are united by the same passion and who are willing to dig deep to make big things happen.

Dino and I worked at the Expo all day Friday and Saturday. There is nothing I like better than to spend the day with a bunch of runners. I love working race expos and races.I especially loved meeting the people who came by and wanted to tell me stories about how pancreatic cancer has touched their lives. While it is heartbreaking to hear how many people have been impacted, it is a gift to be able to tell others that there are organizations that are committed to helping change the future of pancreatic cancer.

Expo booth set up and ready to go.

Expo booth set up and ready to go.

On Saturday, Marathon Goddess Julie Weiss and equally awesome Project Purple runner Shawn Veronese came by to help at the Expo.

Julie, Dino and Shawn

Julie, Dino and Shawn

We showed Julie’s movie, Spirit of the Marathon 2 at a team event Saturday night and enjoyed some time together relaxing before the big race the next day.

Several of the Project Purple Denver team members at the event.

Several of the Project Purple Denver team members at the event.

When I stood in front of the room Saturday night, it literally took my breath away. I have such a sense of gratitude towards all of our runners. I have been told that by surviving, I provide inspiration for them, but really, it is these people who inspire me. Most of the people on the team have family members who are currently fighting pancreatic cancer or they have lost a loved one to pancreatic cancer. I had several friends who joined us just because they are my friends and they wanted to support my cause. Whatever their reasons for joining, they really provide me with a sense of hope for the future, and not just for pancreatic cancer, but for humanity. These are people who wanted to give of themselves. They wanted to train hard, raise money and run to help others. They want to make the world a better place for other people. It gives me goosebumps just thinking about how amazing they all are.

We had a team of 25 runners who came together from the east coast, the west coast and several places in between. The half-marathoners started out on a wave start at 7:15 am. The marathoners were bussed out to their start. The gun went off for them at 8 am. For the half, we had perfect weather conditions most of the way. The temps were in the 50s and overcast. The course was scenic through downtown Denver. There were a lot of runners running the half and since I spend a lot of time running the trails, I forget how fun it is to run in a crowd in a city. I particularly enjoyed the points on the course which were out-and-backs, as I loved seeing other teammates in their purple singlets. We all high-fived or yelled encouragement to one another out on the course.

I had several people ask me how my race was. The weekend really wasn’t about my race, and part of me wishes I had not even signed up to run so that I could have watched every runner come in to the finish. My recap of the race will be very brief. I liked the half course very much. I am not fully recovered from the Bear Chase Trail race 50 three weeks earlier, but I ran as comfortably as I could, enjoying the crowds, music and sights. I finished 13th in my AG of 463 with a finish time of 1:49:52. Several runners asked me how my race went and I told them, “It was fine” or “It was OK”. After the fact, I thought about it, and hope that it didn’t sound like I was disappointed in any way. Truthfully, I just didn’t care about my race. I cared about THEIR races. I wanted to talk about their experiences.

Larry, Laura, Jaclyn and Diane all finished ahead of me. Sadly, I did not get pictures of Larry or Laura, but I got photos of the rest of the runners. I crossed the finish line and ran into Rene, who got a couple of pictures for me.

At the finish.

At the finish.

With Diane, who finished ahead of me.

With Diane, who finished ahead of me.

Right after the finish, I jogged back to my hotel to check out, and then jogged back to the Project Purple race tent so that I could watch the runners come in. After the two-hour mark for the half-marathon, the clouds burned off and the temperatures started to climb. It would ultimately get brutally warm later in the day.

We had very experienced runners on our team and we had several people who were completing half-marathons and full marathons for the first time. We had some PRs, and we had some people who struggled with the heat and/or the altitude. I was so proud of each and every one of them. I was proud of them for putting in the training prior to the race. I was proud of them for how hard they worked to raise money. I was proud of them for finishing their races. Every person on the team crossed that finish line. I am exceptionally proud of each and every one of our runners, for the speedsters to the ones who had to dig deep in the remaining minutes of the race.

There is a saying, “If you want to change your life, run a marathon.” I would argue that supporting other runners also changes your life. It feels good to run for a cause. It gives purpose to those countless training runs. It also feels so good to celebrate other runners’ successes. I enjoy that as much, if not more, than my own finishes.

One moment stands out for me: I was hugging the members of family who recently lost a loved one and was told, “Thank you for all you are doing. You give us hope.” I cannot explain how much I appreciated those simply and kind words. That is a moment I will never, ever forget. No matter what you do, find something you are passionate about and find a way to give back. Surround yourself by people who inspire you. Make the world a better place for someone else. That is my definition of success in life.

Diane, me, JoAnne

Diane, me, JoAnne

With Jaclyn

With Jaclyn

With Vanessa

With Vanessa

With Faby

With Faby

With Marisa

With Marisa

With my middle school/high school friend, Lynn

With my middle school/high school friend, Lynn

With Julie Weiss and Shawn Veronese

With Julie Weiss and Shawn Veronese

With Matt, who ran a marathon PR!

With Matt, who ran a marathon PR!

Kristina and Eric.

Kristina and Eric.

Boomer & Felicia

Boomer & Felicia

Marshall & Kelley

Marshall & Kelley

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Carolyn and Colleen

Carolyn and Colleen

Paige, Julie & Lisa

Paige, Julie & Lisa

Phil & Kristen

Phil & Kristen

Alisa & Kim Lindsay

Alisa & Kim Lindsay

Kim, finishing her first ever marathon, finishing for Dixie, her mom, who passed away from PC two years ago.

Kim, finishing her first ever marathon, finishing for Dixie, her mom, who passed away from PC two years ago.

Thanks again to all of these fabulous people. I am incredibly grateful to have been a part of this team.

The team has raised almost $25,000. If you would like to make a donation, you may do so at the link below.

https://www.crowdrise.com/fundraise-and-volunteer/the-team/RocknRollDenver

The Love Affair

Our family spent the last two weeks in upstate NY visiting our relatives. Last year, I felt almost desperate to get there shortly after completing chemotherapy. At that point in time, I still was not feeling completely confident about my future and I had a strong need to see and touch my family. This year, still feeling strong and healthy following my recent 100 mile race, I looked forward to seeing my family not out of desperation, but out of the simple desire to see the people I love. We had a wonderful time relaxing, getting away from the stresses of our daily lives, and reconnecting with our families and friends.

Hair blowing wildly in the wind on the Lake Champlain Ferry

Hair blowing wildly in the wind on the Lake Champlain Ferry

Today is my two month anniversary from having completed the Bryce 100. Since the race, I have had plenty of people tell me that I no longer have to do ultras anymore. However, a funny thing has happened since Bryce. I seemed to have remembered how much I love running and racing. In the lead up to Bryce, I kept telling everyone I knew that I would never run another 100. I meant it with complete sincerity. I was tired and worried. I was afraid that some nagging pains I was experiencing would become serious injuries. I thought that maybe I had not put in enough miles in training. I was concerned that perhaps my heart was not completely into finishing 100 miles.

All of those worries ended up being completely unfounded. Instead, while I was out on the course, I remembered how much I just love to compete. I love to run, but I had forgotten how much I love the thrill of hunting down other runners, and of pushing myself to see what I am actually capable of accomplishing. I have never been an elite runner. I have no idea what that experience is like. But as a slightly better than average runner, I still get incredibly fired up over testing my limits. I love pushing myself as hard as I can to see how my body and mind will respond. It makes me feel completely alive.

I have run many races since I started running in 1998. I remember the thrill of crossing the finish line at my first marathon. I could not wait to do it all over again, and so I ran my second marathon just seven weeks later. I remember the first time I ran a 5k and a 10k at an all out effort. I was not sure if I could sustain the pace without passing out or throwing up, but I did and I was so proud of myself for giving everything I had. I remember the excitement of running the Boston Marathon, which to this day is the only big city marathon I have ever competed in.

Boston Marathon 2000

Boston Marathon 2000

I remember the joy of finishing my first ultra, a 50k. I remember the apprehension leading up to my first 50 mile race, and then the elation as I crossed the finish line. I remember the incredible pride I felt after finishing my first 100 mile race, as I experienced the payoff of months and months of hard work and dedication. This year, I returned to road marathons in Lincoln, Nebraska. I had not run a road marathon since 2007, and as I ran through crowds of people, I remembered exactly why I fell in love with marathons so many years ago. I returned to 100s this year, in Bryce, and my love affair with trails and ultras was reignited.

But racing is never easy. On numerous occasions, I have engaged in an internal battle with myself. There have been several races where I have wondered if I would be able to finish what I had started. During one trail race that had gone poorly almost from the start, I sat in a mud bank and debated about whether I could go on. I decided that I could. Nothing was broken, and I was not in physical danger. I was just having a bad day. I am tremendously proud of those race finishes that I really had to fight for.

Every distance I have chosen to run over the course of my lifetime has proven to be a challenge in a very different way. Every race has been hard and painful and wonderful and beautiful all at the same time. I have never regretted having shown up to run a race. Each experience has been unique and has taught me something new about myself. That is the beauty in running. Every outing provides a new challenge. Each distance is hard in its own way. No two racing experiences are alike. Just thinking about facing those difficulties gives me a jolt of mental excitement. I love it all: the competition, the challenge, chasing down other runners, and trying to fight off those who are attempting to beat me. Perhaps most of all, I love battling against my own demons.

When I finished Vermont, I thought I had officially closed the book on running 100s. Then I got cancer. It became an important part of my psychological recovery to push those boundaries again.I am still so happy about my experience at the Bryce 100. Part of me wondered if my experience at Vermont was a fluke. My second 100 mile finish made it all feel more legitimate in some way. More importantly, my time at Bryce reminded me how much I enjoy the whole race experience. In the lead up to Bryce, I often felt tired and I had some nagging aches and pains. I think I was not yet 100% following my battle with pancreatic cancer. I hope I have finally officially turned the corner on the road to a full comeback. More often than not these days, I am excited to go out and run. That feeling was often lacking a few months ago.

Vermont 100 finish, 2013

Vermont 100 finish, 2013

Like all long-term love affairs, feelings will wax and wane over the years. The secret is to learn to be patient and weather the difficult times. I am thankful that I have never given up over the times that running was less fun. These days, whether I am running up in the mountains or am pushing for a long flat steady-state run, I have rediscovered the fun and joy. I have three completely different races coming up in the next three months and I am very excited for each of them. Beyond that, I am really looking forward to finding out what new adventure the 100 mile lottery gods have in store for me in 2016. 

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