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 Bear Chase Trail Race 50 mile 2015

The month leading up to the Bear Chase Trail Race 50 mile has been a difficult one. The last race that I ran, I had an altercation with a bike and ended up with a concussion, whiplash and a separated shoulder. It hurt too much to run a whole lot for a couple of weeks following that accident, so my running was sporadic and uninspired. I could not do core or lift weights because of the shoulder, head and neck pain. I had to really rest. I hate resting. Then, the week before the race, two things happened. On Monday, I was throwing up and sick from some bug that I had acquired. On Tuesday, my daughter, Riley’s friend passed away unexpectedly. My heart ached for her. I found myself consumed by her grief. Running suddenly seemed pointless.

I watched Riley grieve and did the best I could to comfort her. But this weekend was also her final high school homecoming. I wanted her to mourn her friend and keep him in her heart. But, I also wanted her to go on with her own life. She needed to go to homecoming and I needed to go run my race.

On race day, I woke up at 1:30 am with my stomach not feeling well again. I have had issues with reflux off and on since my surgery for my pancreas, and so I was feeling bloated, full, a little nauseous and I could not stop burping. Food was not at all appealing. This is not how you want to start a 50 mile race.

My husband, Stephen, was running the 50k. We packed up our stuff and were out the door by 4 am, so we could make it to Denver in time to board the race bus.

On the bus to the race start at 5 am

On the bus to the race start at 5:15 am

We got to the race with about 45 minutes to spare before the start of my race. The 50k started an hour later. We set up shop and chatted with some of the other runners. Finally, we lined up just prior to the gun going off at 6:30.

At the start with my friend Kathy, who was running her first 50k!

At the start with my friend Kathy, who was running her first 50k!

At the start receiving my annual pre-race hug from RD extraordinaire, Ben Reeves

At the start receiving my annual pre-race hug from RD extraordinaire, Ben Reeves

At 6:30 am, the 50 milers and 100kers were off. Right away, I knew I was off my game. A lot of times, I taper and go into a race feeling sluggish and stiff, but then am fine once I warm up. My hips were so tight that I could not run with my normal full range of motion. Add to that the fact that I felt full, bloated, flabby, weak and heavier than my normal racing weight, and it was a rather inauspicious beginning to a very long day of running. I really hoped that those feelings would pass.

The course is four 12.5 mile loops. Some people hate loops, and truthfully I think my favorite courses are out and back or point to point. However, the nice thing with loop courses is you do not need to carry much. I had a small water bottle and that was all I took. I knew there was plenty of aid on the course, and I could access one drop bag at the start/finish area. Traveling lightly is nice in a long race.

My reflux was in full swing, so I kept belching and feeling classy. Then, within the first mile, I had to pee. Badly. My hips were still not moving well. I could not run remotely fast. I was not feeling like myself. I started wondering if I was going to make it 50 miles.

Since I had to pee so badly, I started looking for a place to go. The course was set up slightly differently this year, so I was a little confused as to where we were. I saw that we were going to be headed up a very exposed Mt. Carbon shortly, so I pulled off into the trees quickly. Feeling extremely relieved, I hopped back on the course went up & over Mt. Carbon and soon had to pee again! I went on to pee three times in that first loop. Nothing seemed to be going well. Towards the end of the first loop, two other women and I went off course. After a couple of minutes, we saw another runner and figured out where we needed to be.

I saw Stephen as  I was coming to the Boat Launch aid station! I got very excited because I was not having much fun. We ran together for a bit, thinking that we could maybe finish out his race together, but then the 50k and 50 mile courses split up again. It was fun while it lasted. I started wishing that we had decided to run the same race as a “date run” and that maybe I wasn’t really a competitive person any more. I also thought that while it was nice to have company, I would have DNFd had I kept chatting while running. I just did not have the energy for it.

I had not been able to get any food down and barely drank any water for the entire first loop. It is not good to get behind on eating and drinking so early in a long race, and I knew it. But I was afraid if I ate or drank, I would throw up. I started thinking about quitting the race somewhere early on in that first loop.

Coming through the start/finish after the first lap. Photo courtesy of Ali Smith

Coming through the start/finish after the first lap. Photo courtesy of Ali Smith

After a while, I ran into my friend Kathy, who was running her first 50k. We ran and chatted for a few minutes, but then eventually parted ways, too. My stomach took a turn for the worse as the heat cranked up. I had to stop and walk because I felt like I was going to throw up. If I started puking, I would have to drop. I was having an internal debate. The devil was on one shoulder telling me it was ok to quit. The angel on the side kept telling me, “You don’t quit. You are not a quitter. You have never DNF’d. Suck it up and find a way to finish.”

I kept thinking about quitting. Every mile, I tried to convince myself that it would be ok to drop. I could run three loops. The would be 37.5 miles and technically be an ultra, even if it wasn’t an official race distance. Who cares, anyway? 37.5 miles is a nice distance to run for fun.

After the third lap, I saw Ali Smith and asked her if she could find me some tums or rolaids or something to help settle my stomach. I grabbed a couple of gels and some salt pills, ate the tums that Angel Ali found for me, and headed back out.

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It was hot and I was not heat acclimated. I have been running with Willy as early as possible because he gets hot quickly. As a consequence, I was not handling the heat well at all. I walked a lot of that third lap, especially the long section by the golf course, which has zero shade. I continued debating quitting. I had picked up my ipod at the start finish to help motivate me for the last two laps of the race. When I dumped water on my head, some of it must have gotten into the ipod. It kept stopping every couple of seconds. I would restart it. It would stop again. I debated throwing it into a drainage ditch. It was infuriating to me but I desperately needed something to take my mind off of the pain I was in.

At each aid station, I packed my bra with ice. I was suffering in the heat. I kept battling waves of nausea. I was afraid if I kept going that I would have to walk the entire final lap. I started trying to play mind games to try to convince myself that I could keep going. I told myself, “You only have 5 more miles to the start/finish. You can make it there. Then you only have to do one more loop!” While I generally feed off of my own internal happiness when I run, I was not feeling particularly happy. I told myself, “You know there are people who would love to see you fail. Don’t give them the satisfaction of throwing in the towel.” After a whole lot of internal dialogue, I found some motivation. I was able to start running again.

Eventually I made it to the start/finish area. I did not allow myself to think of quitting. I had no doubt that I would now finish the race. Steve had finished his 50k about an hour prior and was sitting in a chair, not feeling too well. He had made it to the final mile of race but then threw up four times. This was a bit of a setback, but he managed to finish in just under 6 hours. Ali Smith and RD Ben Reeves came over to help me get my stuff together for the final lap. Race Timer and friend Lonnie Somers of Hallucination Sports announced that I was second female in the 50 mile. I thought, “There is NO way.” But, this lit a fire under my behind. I had to suck up the discomfort and run as much as I could. I ran and caught up to Marianna, whom I had passed going into the start/finish, but who had passed me on the way out. She was ahead of me going up Mt Carbon, but I pulled ahead on the downhill. It was my goal to get as much distance on her as possible, because she had been strong and steady all day. Marianna inspired and motivated me, particularly over the last two laps.

I ran until the Fox Hill aid station, which marks the long exposed section by the golf course. Here I knew I would be mixing in walking and running until returning to the wooded section. My legs were cramping at this point. My ipod kept shutting itself off. I was frustrated but knew I would finish at this point. My goal was to just not get passed. I ran as much as i could and walked when I absolutely had to. I looked behind me to see where Marianna was, an instead saw a new woman behind me. Where the hell did SHE come from? I could not afford to goof off or walk unnecessarily.

About three miles from the finish, my glasses fell off my head and broke. The lens popped out. I briefly tried to fix it but knew that I couldn’t waste time on my glasses. I shoved the lens in my bra since I had no place else to keep it.

I kept moving forward and eventually came up on the finish line. My official time was 9:52, a PW on this course by far (PR is 8:39). But, I had made it. I was so incredibly relieved. I also held on to second place female overall. This was in many ways the hardest day I have ever had on a race course. I usually do not think about quitting. Instead, I spent the entire day thinking about quitting. I had to talk myself into finishing. It took me a while to find reasons to keep going, but I did and I am so glad. I would have been very upset with myself for dropping.

Why was this particular race so difficult? There are many reasons. Since finishing 2nd at the Bryce 100 in June, my training has been completely unfocused. I signed up for a high altitude mountain race and the Bear Chase. My training was not zeroed in one particular course or goal, so I was all over the place. My mental motivation was also somewhat lacking over the last few months, too. I never fully came out of 100 mile recovery mode. I need to drop a couple of pounds to get back to my fighting weight. Some of this was due to lack of discipline but some of it was due to the fact that I still don’t have my half-a-pancreas digestive system figured out. I was getting hypoglycemic, so I was eating more than normal to prevent myself from having scary bonks. I was not heat-trained. I did not taper properly. I ran more than I should have two weeks out, then the final week I ran very little due to my stomach issues and Riley’s friend’s passing. I have a typical protocol that I follow and I did not follow it at all this time around. I will be running the Denver Rock & Roll Half-Marathon with the Project Purple team, but I am going to take a couple of months to focus on recovery and fix all of the things that I did wrong this time around.

I may have run a Personal Worst, but I am so glad that I did not give up.

Crossing the finish line. So happy!

Crossing the finish line. So happy!

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.

With Kathy, who finished her first ultramarathon! So proud of her!

With Kathy, who finished her first ultramarathon! So proud of her!

With Stephen, who had to hold onto my awards because I physically could not do it.

With Stephen, who had to hold onto my awards because I physically could not do it.

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http://www.bearchaserace.com/