Tuesday, December 9, 2014

Rock Canyon Half-Marathon report

I ran the Rock Canyon Half Marathon today. My husband, Stephen, loves this race and has run it several times. I, on the other hand, have not run Rock Canyon since 1999. I had nothing against the race. Rather, it was more a matter of us having to divide and conquer when the kids were younger. We both love to run but we each picked a couple of races each year and called it good.
I have only a handful of half-marathons under my belt. I honestly had no idea what kind of pace I would be running today. I knew that it would not be easy for me to run this race at a fast (for me) pace. I have been nursing some nagging injuries since I finished the Bear Chase 50 mile race back in September. Of course, there was also that little cancer thing that I dealt with this past year. Between my leg and my lungs, I cannot remember the last time I really was able to run “fast”.
In any event, Steve really wanted to run this half and wanted me to come along, too. I reluctantly allowed him to sign me up. I felt fairly ambivalent about running the half leading up to the race. Then, on Thursday, I woke up feeling sick with a sore throat, cough and overall fatigue. On Friday, my body was aching all over. I wondered if I should bother to go to the race at all, but I knew I would end up running somewhere, whether I went to the race or not. I figured I ought to at least give the half-marathon a shot.
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Friday, December 5, 2014

What was I thinking?

I woke up panic-stricken at 2 am Tuesday morning. I had an overwhelming sense of fear. What on earth had I been thinking the day before? I had been toying around with the idea of signing up for another 100 mile race, which would be my first post-Cancer 100. I had gone back and forth in my mind on which race I really wanted to do, or if I even wanted to do one at all. For the last two months, I had been unable to make a decision on the matter. Monday morning, after yet another run/discussion with my supportive and encouraging husband, I went home and registered for the Bryce Canyon 100.
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http://mypancreasranaway.wordpress.com/2014/12/03/what-was-i-thinking/


Sunday, November 30, 2014

A Week of Giving Thanks

Thanksgiving was this past Thursday. One of the gifts that my cancer diagnosis gave to me was the ability to truly be thankful for small things. In years past, I intellectually knew that Thanksgiving is a day set aside to express thanks and gratitude for the things we have and the people in our lives. This year was truly a different experience for me, though. I have never been so truly, deeply and completely happy to celebrate the small, seemingly mundane moments of life.
In 2013, I had just gotten out of the hospital six days prior to Thanksgiving. On Thanksgiving day, I could not stand up straight. I was hunched over because my incision pulled my abdominal cavity together tightly. It was impossible to hold my body in a fully upright position.
My husband and kids had signed up for the local YMCA Turkey Trot 5k on Thanksgiving day. I insisted on going to watch the race. It was physically difficult to stand up for an hour, but I did not want to miss seeing my kids and husband cross the finish line. As for the rest of the day, I barely remember anything from it. I know we enjoyed a family meal, but I honestly cannot remember any of the details.
This week has been an entirely different experience for all of us.... 
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Monday, November 24, 2014

I Guess I Really Did Have Cancer

I Guess I Really Did Have Cancer

Yesterday marked exactly one year since I found out that I had pancreatic cancer. The date was November 22, 2013. I will never forget the date, in part because it is also my father’s birthday. I still feel badly about delivering that news to my family on my dad’s birthday.
A couple of weeks ago, I sought out a second opinion from another oncologist. This has nothing to do with the care I have received. It has everything to do with my own peace of mind. I really should have sought this opinion last November or December, but my insurance company fought me and denied me so many times that I just gave up. For some reason, I could never shake the feeling that I should have gotten that second opinion. This may sound silly, but there was even a little voice in my head that wondered if the original pathologists had been wrong. Perhaps I never had Pancreatic Cancer after all!
On November 21, 2014, one day shy of the anniversary of my original diagnosis, I heard back from the doctor’s office where I had sought out a second opinion. 
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Tuesday, November 18, 2014

Remembering on My Cancerversary

There are certain moments that you will always remember in your life: your first kiss, your wedding day, the birth of your children. I can add to that otherwise happy list the moment I heard the words “Pancreatic Adenocarcinoma”. November 18 is the day I had surgery one year ago for what turned out to be Pancreatic Adenocarcinoma. I went into the surgery thinking that I had a precancerous lesion. I did, but there was also cancer present. This past year has been an amazing journey.
I remember seeing my primary care doctor and being told I needed some additional testing. I remember the moment when he got the report from my CT scan and we went from laughing and joking to a very sobering conversation. I remember feeling like the air had just left the room. I remember thinking that my then 10-year-old daughter Peyton was in the waiting room and we were headed to a high school cross country meet. I remember wondering how in the world I was going to pretend that everything was good around my children.
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http://mypancreasranaway.wordpress.com/2014/11/18/remembering-on-my-cancerversary/

Saturday, November 15, 2014

Moving Beyond Fear

A new post has been added to my Wordpress site.

Moving Beyond Fear

MOVING BEYOND FEAR

Winter descended upon Colorado in a matter of hours on Monday. I went for a run Monday morning and the temperatures were in the mid 60s. As I finished up, I looked behind me and could see a wall of clouds moving in from the north. The winds
were blowing at gale forces and I was glad I had gotten out to run when I did. I knew the next few days were predicted to be bone chilling, with wind chills below zero. The weather forecasters were not wrong. This week has been bitter cold. Snow began falling Monday afternoon, as the temperatures dipped into the 20s.
After I got done working on Tuesday, I squeezed in a 7 mile run prior to picking up the girls from school. Maybe I am just a little crazy, but I always get excited about the first run in the snow. As winter hangs on into spring, I definitely lose my enthusiasm for running in the snow. But, the first snow excites me every year. So, I ventured out in 16 degree temperatures and was sadly disappointed at the lack on snow on the north side of Colorado Springs. There was a little, and it was pretty, but there wasn’t enough to qualify it as the real first snow run of the year.
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Sunday, November 9, 2014

Moving!

I am in the process of moving my blog. Please follow the link below to my latest post! Let me know what you think of the new format.

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Saturday, November 1, 2014

November is Pancreatic Cancer Awareness month!

November is Pancreatic Cancer Awareness month. November holds an additional significance for me because I was diagnosed with pancreatic cancer on November 18, 2013. I am just a couple of weeks away from my one year anniversary. By making it one year, I will have survived longer than 75% of people who are diagnosed with pancreatic cancer. 

I bought this shirt to run in:


On the back, it says, "Aiming for the 6%", which is the overall five year survival rate.  It honestly still feels surreal to think that I had Pancreatic Cancer. A lot of this last year feels surreal. But, I have the scars and the pathology report that can quickly bring me back to the reality of it all.

Last Sunday evening there was an event in Denver called the Pancreatic Cancer Action Network Purple Light. This is an event that honors survivors and remembers those who have been lost to Pancreatic Cancer. We met on the capital steps at 5 pm. I got to meet people I had been in communication with via facebook.

Here I am with Karl, who is in charge of media relations in the Denver area. Karl lost his wife to Pancreatic Cancer. 
This is Beth, who is in charge of putting together the Purple Stride. Beth was 5 years old when she lost her mother to Pancreatic Cancer. Her mother was only 37 years old when she passed. Beth is frustrated because the survival statistics have barely changed in the time since she lost her mother.

Just prior to the ceremony beginning, we gathered for a survivor's photo. As you can see, there are only ten of us. We didn't really know one another, but it was a happy occasion to see, talk with and hug others who were part of this very small club. (Photo credit to Beth Corlett)


People sitting on the steps to honor their loved ones.


I have been lucky enough over the past couple of weeks to get to spend time with others who have been impacted by Pancreatic Cancer. First I spent an afternoon with Elli from Project Purple.


Then I got to spend an evening in Denver at the Purple Light event. I cannot express strongly enough how powerful of an experience it is to meet and talk with others who have a connection to this cancer. We all understand what a devastating diagnosis it is, whether we are survivors or family members who have lost a loved one to the disease.  It is the club that none of us asked to join or wants to belong to, but since we are here, we have a strong bond that unites us against a common enemy. 

I hope that November brings as much support and recognition to Pancreatic Cancer that other cancers have received. Too many lives have been lost. Too many families have been torn apart. Too many survivors continue to struggle with guilt for being one of the very few who are fortunate enough to make it. We need more funding, more research dollars and more public support to battle this illness. I will be making a couple of announcements in the coming weeks about things I will be doing to make a difference for the future of Pancreatic Cancer. I am very energized and excited about some upcoming projects that are in the works. Stay tuned and wear your purple!






Sunday, October 26, 2014

Uncertainty

I am betting that most of my readers lost a lot of sleep this week wondering if I signed up for the 100 or not. So, to end the suspense I will just say, no, I did not sign up.  The day after I wrote that blog post, I woke up early in the morning and decided I would look at other races. I cruised some of the ultrarunning calendars and came across another race that sounded beautiful and challenging. I got excited about this particular race in a way that I had not been feeling about the other race. The way I felt drawn to this race made me wonder if the other event just wasn't "the one". Maybe it wasn't the distance I was uncertain about; maybe it was just that particular race. I almost registered right then and there for possibility #2, but I decided to give it a couple of days. There was no sense of urgency with this second race so I had time to ponder it a bit. I was very intrigued by the possibility of this other race, but thinking about the training involved just seemed daunting. Am I really up for the mileage and time commitment? What I decided is that I just needed to stop thinking about racing for at least a couple of weeks. I forbid myself from "race shopping". I didn't want to think about it or talk about it. I just wanted to give it time, to give myself time, to figure out what felt right.

I have never had this issue before. Every time I have signed up for a race, I have been both a little afraid and a lot excited. Right now I feel so uncertain about so many things. I have been through a lot this year, and I am worn out mentally and physically. Running was really hard again this week. I got my port out on Tuesday and have struggled the entire rest of the week with breathing and feeling like my legs are heavy and dead. Is it the anesthesia? Or is it that I am recovering still from running 50 miles four weeks ago? Or is it the trauma of surgery and chemo? Is it just the fact that I cannot seem to get a decent night of sleep? It is likely a combination of everything. I just know that Friday and Saturday, on what should have been very easy runs, I gasped for air and had to walk. Yesterday, I wondered aloud to Steve if maybe I shouldn't have done chemotherapy. If I hadn't, it would have been more of a gamble for recurrence, but maybe I wouldn't feel so crappy right now. I hate to second guess decisions I made months ago, but I can't help but wonder a little bit how things would look for me right now if I had chosen a different path. For now, I need more time to let my mind, body and soul recover. I am sure I will be racing something come next year, but first and foremost, I want to feel good again. Maybe Race #1 wasn't "the one". Maybe Race #2 is...or maybe it is not. Maybe I am just not ready to make a commitment. 

Finally, I want to give a shout out to a special lady I had the pleasure of meeting last weekend. Elli contacted me through my blog several months ago. Elli lost her beloved mother to pancreatic cancer. Elli runs races to raise money for Project Purple. Project Purple is a charity that raises money both for research as well as to help PC patients and their families defray some of the costs associated with this devastating cancer diagnosis. Elli was in Denver last weekend, so we met up for a couple of hours. It was such a gift to meet up with this lovely woman who understands all too well the destruction that comes along with a PC diagnosis. Once again, I am reminded how much good has come out of this crappy diagnosis. I have met some really fabulous people along the way.


You can find out more about Project Purple here:

http://www.run4projectpurple.org

Wednesday, October 22, 2014

My Port is Gone but the Fight Continues

 I got my chemo port, aka Frankenboob, removed yesterday.

Here is the before picture...


I don't have an after picture yet because it is covered in gauze and bandages.

I am very aware of how lucky I am. I saw several nurses yesterday and each one asked what my diagnosis had been. When I replied, "Pancreatic Adenocarcinoma", I got the same response from each of them. It is the response you get from people who are familiar with this disease. Typically, people nod knowingly and say, "Wow." Then they keep nodding quietly, because what else can you say? 

Except I had one really awesome nurse who said, "We almost never do port removals for pancreatic cancer patients." Then I was the one nodding silently, because I know the very grim statistics. Yes, I  know each patient is a statistic of one but I also know that my very small support group of online friends with PC has been rocked by recurrence and loss over a very short period of time. I know one of my friends who is fighting PC had to bring in hospice this week. Another friend lost her mom on the same day my port came out. I have other friends who are actively fighting recurrences or who are trying to figure out why their tumor markers are rising. So I am pleased to have my port out, but the bigger picture is a sobering reminder of how devastating this diagnosis is both for patients and for their families. 

The five year survival rate for pancreatic cancer remains at 6% in the United States. Approximately 75% of PC patients do not make it the first year. According to the SEER website, PC is the 12th most diagnosed cancer in the US, but the fourth leading cause of cancer deaths. It is estimated that 46,420 new cases of pancreatic cancer will be diagnosed this year, with 39,590 people dying from the disease. By contrast, there will be 232,670 new cases of breast cancer diagnosed, with approximately 40,000 deaths. 


If projections hold, pancreatic cancer will become the second leading cause of cancer deaths in the United States in a few years.

http://www.pancan.org/wp-content/uploads/2013/01/incidence_report_2012.pdf

I wonder why the budget for pancreatic cancer research remains so low in comparison to other cancers. Is it because the prognosis is typically so grim that many people deem it as a hopeless situation? I wish people could look at those of us who have battled the PC monster and see us for who we are. While the numbers are not good, we have not lost hope. We have a lot of fight in us. We want and need better tools in our arsenal to battle this beast. We are men and women, young and old. We are daughters and sons. We are sisters and brothers. We are wives and husbands. We are mothers and fathers. We are humans who deserve better. So while I celebrate this little milestone for myself, I am pained by what my "PC family" is forced to endure. Something has to change. Too many amazing people have been lost to this illness. Too many more will be lost after fighting valiantly. We desperately need more funding for research into ways to improve survival rates. Pancreatic cancer fighters deserve better than to be told, "We have a chemotherapy that may give you an additional month of survival, but it will make you incredibly sick in the process." It is time to demand more research dollars for this particularly deadly illness. I know a lot of people who are cynical about "awareness", but with awareness and attention comes money, and that is what we so desperately need.

Friday, October 17, 2014

Choosing My Battles

Tomorrow will mark three weeks since I ran the Bear Chase 50. I am still tired and my legs still do not feel 100%, but I am enjoying getting out and running very slowly with my husband and my friends. The first couple of weeks after I run a big goal race, I get into a little funk. I miss the mood enhancing effects I get from running in and of itself. I also miss seeing all of my running friends while I am forced into taking time to heal. There is often a big emotional let down that comes after a big event passes, because I have spent so much time and energy preparing and focusing on that event. I am left thinking' "Yes, I am happy I just achieved X, but now what?"

Oddly enough, I have found my battle with pancreatic cancer this year has left me in the same place emotionally. I do battle well. When I got my diagnosis confirmed, I focused on exactly what I needed to do to get through the fight. I did experience fear, of course, but I had a goal in mind. I knew what the enemy was and I was at peace with fighting that enemy. When I was engaged actively in the fight, I felt a sense of emotional clarity. I knew what was important. I never doubted my priorities. I experienced the emotional and psychological calmness that comes with absolute focus and certainty that what you are doing is the right and necessary thing.

Now that the cancer battle and my comeback race are over, my goal directed inner voice keeps pushing me to figure out what is next. People keep telling me to "just enjoy" life right now. But part of enjoying life for me is having goals. It gives me a sense of purpose to focus on something. I love the thrill of a challenge. I have a bit of a sensation seeking personality, and channeling that sensation seeking into positive risk is a psychologically healthy thing for me to do. People think running long distances makes me crazy. I think running long distances keeps me sane.

My dilemma is, I am having trouble clarifying what I really want to do next. I am three weeks out from my last race. My body and my mind and still in rest and relaxation mode. I do not want to make a decision about what is next until I am good and ready. However, registration opened up for a race this week that I had planned to do in 2014. The race took place the weekend after I finished chemotherapy, so I did not run it. My intent had been to make it my big goal race for 2015. It is a 100 mile race, so this is not a commitment I can afford to take lightly. 

The day it opened, I felt compelled to sign up. I have wanted to run this race. It means something to me. I have friends who plan to be there. My husband gave me his blessing. But for some reason, I just am not ready to make the commitment. I am not afraid of the distance. I have done it once before and it was challenging but I had a great experience. Rather, I am just not sure if I am ready to take on that big of a commitment right now. I am tired. I am emotional. The answer is not clear to me and I cannot make the decision. If I don't make the decision soon, it will be made for me because these crazy races fill very quickly. Maybe my indecision means something and I should listen to those doubts. However, I also know that a month from now, I may feel fabulous and then be kicking myself if I did not sign up. 

As I was talking to a friend during a run yesterday, we talked about doing something because you want to do it or because you used to want to do it. I am not sure right now which camp I fall into. I like running 50 miles. I think that is my favorite race distance. Running 50 miles is a big time and training commitment, but running a hundred is a completely different animal. I loved the challenge in 2013 and am so thankful I did it, but do I want to do it now? Or is it just something I used to want to do? 

Of course, in the back of my mind, I keep telling myself not to put off doing things I really want to do. I have no guarantees that I will be healthy in 2016. I think I will be, but no one knows for sure. If I really want to do something, I need to make it happen. I hate the saying "Live every day like it is your last", because I think people use that to justify selfish and wreckless behavior. However, I prompt people in my life to think about what they would choose to do if they only had one year left on the planet. Who would you spend that time with? What would you choose to learn? Where would you go? What would you do? Those are questions that we should be asking ourselves routinely, because the answers will change depending on our life circumstances. My life circumstances have certainly changed over the last year and I am still trying to figure out what the lasting impact will be for my own priorities and values. 





















Thursday, October 9, 2014

I am more than my lady parts

I wanted to update readers on my diagnostic mammogram, which was completed on Tuesday. As it turns out, and as I suspected, everything is fine. The radiologist even came in and checked me manually for lumps. What he thinks happened is that the breast was not completely flattened out the first time around on my screening mammogram. 

I had to wait before I wrote anything. I know I was supposed to feel relieved and happy, but instead I just felt really angry. Everyone else was so relieved on my behalf. But having the second test did not make me feel any better, because I already thought I was fine. Then I became more frustrated with myself for not feeling happy or relieved. Why couldn't I feel what I was supposed to feel?

 In truth, I just felt frustration through the whole process. I felt in my heart that my breasts were fine, but I couldn't be sure until I went in for the second test. My husband, kids, parents and friends were all worried. I appreciate caution in the medical community and I know doctors are in a catch 22. If they miss something, they can be sued. However, over testing causes so much fear and anxiety and that is a problem, too. After everything our family has been through, my anger just bubbled to the surface and finally boiled over.

For the better part of 24 hours, I vented my frustrations and said a lot of bad words. I wondered why my pancreatic mass had been written off as nothing for so long, while the first hint of anything in breast was treated with such an abundance of caution. I thought back to when it was first recognized that my pancreatic mass was actually potentially bad last year and how  my insurance company continually rejected requests of my doctor's, while simultaneously sending me reminders to get my Pap smear and my mammogram. Oh, the irony! My lady parts are not the only part of my body and they are currently not trying to kill me, but my insurance company seems to think that they are the only parts of me that matters.

After my test, I called my husband at work and let my anger and frustration fly. He was honestly confused and bewildered. He wondered why, after everything I have been through, this scare was the thing that finally brought out my anger. It was just the thing that tipped me over the edge. I held tough for so long, and finally just got furious. I do not like being afraid. I do not like scaring my family. I am more than my breasts and cervix, thank you very much, insurance company and society!

Please make no mistake. I love my lady parts and they have served me well in life. I enjoy having them and do not want anything bad to happen to them. I also love my less sexy but no less important digestive system, of which the pancreas is a really important part. The pancreas helps digest food by making pancreatic enzymes and regulates blood sugar by making insulin. It is a really important organ. In fact, it is kind of two organs in one, so it is pretty amazing! It is no less important to me than my breasts or my vagina. 

So my anger colored everything for 24 hours. I could not sleep. I was upset with my husband for not understanding why I felt the way I did. I was angry in general for being put through days of not being positive I was fine. But then I started thinking about how as much as I do not like feeling scared, I also do not like feeling angry. However much time I have left, whether it is a year or another 45 years, do I want to spend my time being an angry person? I get to choose how I feel about things and the answer is clearly no, I do not want to be an angry person. As simple as that sounds, the anger started to evaporate when I thought about it in terms of being a choice.

This is not to say that feeling angry is all bad. I WAS angry and I really needed to get it out and off of my chest. If we do not allow ourselves to experience our emotions, they will come out eventually and inappropriately. But if I allow that anger to consume me, then ultimately I am allowing circumstances to rob me of my joy. I will not let that happen. I have fought hard to not let cancer win the emotional battle and I am not going to let this scare win now.

So onward and upward. My chemo port was supposed to come out October 7, the day of my second mammogram. Now it is scheduled to come out October 21. That is a day I am looking forward to with great happiness! 




Saturday, October 4, 2014

I think my body is trying to kill me

I am starting to wonder if the cells in my body are conspiring against me. I was supposed to have a nice restful week after my 50 mile race last weekend. As expected, my hamstring has been bothering me, as has a hip flexor. I went for a few short, easy walks this week to loosen up. I also scheduled a couple of doctor appointments because I realize it is important for me not to take my health for granted.

I had a screening mammogram on Monday, had a physical on Wednesday and a port flush on Thursday. I am not an alarmist about things like breast cancer. I do not have any immediate blood relatives with breast cancer, so I have assumed that my risk was pretty low. I also know heart disease remains the number one killer for women. I figured cholesterol and blood pressure checks were a more important part of routine health care in my life.  I went for a baseline mammogram the year I turned 40. I am now 45 and have had three or four mammograms. Honestly, I cannot remember how many times I have gone in for that particular screening, only because I have not been concerned about it. I think I may have skipped one when I was 41 and then went the next two years. I skipped last year because I was dealing with my pancreatic cancer. I figured I should go this year, though I was not concerned about it at all. 

My relaxed attitude towards mammograms changed when I got a call on Thursday saying that I needed to come back for the diagnostic mammogram and an ultrasound because of a spot the radiologist was concerned about. I know there are many, many false positives. I know this very likely to turn out to be nothing. But last year I was completely convinced that the spot on my pancreas was nothing. I wanted to skip follow up testing, until a friend in the medical field convinced me I needed to go in. 

So I felt disbelief when I got the call, and then fear, and then anger. I never, ever got angry after my pancreatic cancer diagnosis. Getting the bad news phone call this time around just made me furious. I told my husband, more than fear, I am just pissed off. I do not want to have to go through this uncertainty again. I do not want my family to feel fear again. I just heard the words "no evidence of disease" at the very end of August. My family's very tenuous sense of security and safety is thrown into doubt once more and it just infuriates me. 

I know this will most likely turn out to be absolutely nothing. My oncologist called to reassure me of the very high false positive rate. But until I hear for certain on Tuesday when I go back in for testing, I just do not know for sure. I have heard from so many women who have been called back for extra screening that turned out to show all was well. Of course, there are many women who got called back and it turned out to actually be cancer. While one missed case of cancer is obviously devastating, the number of false positives concerns me. It seems like many women are going through a whole lot of stress and anxiety over things that show up on their screening tests that turn out to be nothing. I am glad there are diagnostic tests for breast cancer, but I just wonder why the screening process is not more accurate. 

Of course, I am all for screening, and I really wish I had been sent for further testing many years ago when my pancreatic cyst first showed up. That was determined to be nothing of clinical significance, when it turned out that it was actually quite significant. I am hoping that the over abundance of caution given to my mammogram will turn out to be unfounded. Given my recent history, I cannot afford to take anything for granted. So I will have extra testing done on Tuesday and hope that my suspicions are correct and that the mammograper will tell me my breasts look awesome and send me on my way. 

The good news for the week is that according to my physical, I am in great health. I had a heart rate of 43, my cholesterol was excellent, and other than slightly elevated blood glucose, everything was fine. Since I only have part of my pancreas, I will have the blood glucose test repeated to see if this was a one time thing or if it is part of a trend. My hope is that I get good news on Tuesday so I can focus my energy on healing up and getting back to running. Are the cells in my body conspiring to kill me? Of course I do not actually think that, but hopefully I will know for for sure on Tuesday. For now, I will just remind myself that I have already looked the monster in the eyes and fought it off. I can handle whatever gets thrown at me this week.










Sunday, September 28, 2014

Bear Chase 50 mile race report

Yesterday I ran the Bear Chase trail race 50 mile race. I have run this ultra twice before. In 2012, I ran the 50 mile in 8:39, finishing as third female overall. Last year, I ran the new 100k and was first female. This year, as I went through my cancer treatments, I kept it as a goal of mine to be back this year for one of the distances. I was not sure what I would be able to run, but I hoped to run one of the ultras (there are 10k, half marathon, 50k, 50 mile and 100k distances offered at this race). A couple of months ago I decided to go for it and sign up for the 50 mile. My husband, Stephen, and my friend, Vanessa also signed up for the 50k.

I will skip over the my less than stellar prep, other than to say I did the best I could given the circumstances. I have written about it previously, and those interested can scan over my previous blog posts. In the week leading up to the race, I thought about how I felt like I was brand new to ultras. I felt like I still had the same brain, but after my pancreatic cancer surgery and my 18 rounds of chemo, my body was different and there was a big question mark in my brain as to how my body would respond when I really demanded something difficult.

Steve and I picked up Vanessa at 4:20 am and headed up to Morrison, CO. The forecast was a little scary. After some unseasonably cold weather, we were in a heatwave, with temperatures predicted to be in the mid 80s and sunny. It was 66 degrees at 5:15 when we arrived in Morrison. We put our drop bags down in the staging area, took care of last minute business and those of us running the 50 mile and 100k lined up for the 6:30 am start.

Last minute "good byes and good lucks" with Vanessa...
And with my husband, Stephen.

A group of us in front of the porta potties, because that's just what runners do.
From left: Ali, me, Jeff, Christoph and Dan.


At 6:30 am, we were off. The fifty mile race consists of four 12.5 mile loops. When I ran the race two years ago, I finished my first loops in just over two hours each. I knew it was going to be hot, so I wanted to get the first loop done as quickly as I could. I normally go out fairly slowly, but I wanted to bank some time for the inevitable slow down. I saw Heather just as we were starting off, so we chatted and ran the first couple of miles together before eventually splitting up to run our own races.

I felt pretty good on that first loop, running pretty much every step. I got back to the start area in 2:02. I thought, either I am going to hang on and have an amazing finish or I am going to blow up.  I had to spend several minutes at the start area, refilling my supplies before heading back out. On the second loop, runners started spreading out a bit, however, this is when the 50k racers, who started at 7:30 on a different loop, begin to join the people who are running the longer races. Many of these runners are running faster and look a little fresher. This is where my competitive spirit kicks in and I want to chase people down, but I had to remind myself not to be an idiot and just to run my own race.

I felt ok on the second loop. I was running a little more slowly, but more in line with a pace that made sense to my body. I was not pushing myself as hard but had settled into a rhythm. The sun was now up, and even though there was a breeze, I was starting to get a sense of how hot it was going to end up being. I finished my second loop in about 4:15. Slowing a bit, but still thinking I might be able to run a sub 9 hour if things went well. 

I went out on my third loop. This was where I would be getting into unknown territory. My longest run had been a flat 24 miler about two months before the race. While the Bear Chase course is not mountainous, it does roll, notably going up Mount Carbon four times, followed by a long downhill. I lacked hill training and I knew it. It was also getting very hot as we headed into the late morning. I now walked up all of Carbon to save myself for the rolling, exposed nature of the last half of the course. I was running strong on the downhill after Carbon somewhere around mile 30. A gentleman stepped off the trail to let me pass. Something seized up in my hamstring. I thought it popped, but couldn't be sure. I could not run at this point. In fact, I was walking with a significant limp. I thought my race was over and didn't even think I would be able to finish the third loop. I walked, limped, massaged my leg, and tried to dunk it in the creek, but could not bend. I walked up to the next aid station, only to find Stephen there waiting for me. We each grabbed a drink of Coke and moved on walking together. I told him I really did not want to drop, but I did not know if I would physically be able to finish or not. It was at this point that Stephen threw up the Coke he had just drank. My poor husband has been plagued by stomach issues in ultras. We talked about our races and what had gone wrong so far. We alternated between small bits of jogging and longer stretches of walking.

Finally, I was able to run slowly for a consistent stretch and thought perhaps I could get the last loop in and salvage a finish after all. Stephen and I ended up splitting up again, as he told me to go ahead. I got through the start/finish area again somewhere around 7 hrs. My slowest loop by far, but considering how much I had walked, it was not too much of a disaster. I was greeted by Vanessa's husband Andy in the start/finish area. Andy graciously helped refill my water bottle and helped me get my head straight while I tried to face the last loop on my own. Stephen came in while I was still at the staging area, finishing his 50k in 5:58:14. He told me that he had thrown up two more times after we parted ways. I am so proud of my husband for finishing so strong despite the stomach issues that continue to plague him!

I finally got off on my way to the last 12.5 miles. Maybe a third of a mile into my loop, I happened to cross paths with Dimitar, who was running his first 50 mile race. We decided to run together and ended up sharing 6ish miles together until the top of Mount Carbon. I had run on my own for much of the race, and had not been looking to a very long and slow final loop on my own. Finding someone who I could share miles and conversation with made it so much more pleasant to keep going in the face of pain. While we parted ways for the final miles of the race, we ended up leapfrogging and finished within a minute of each other.

Here is a photo of us from the finish.



The final six miles were hard. Every step hurt. I kept pounding salt down my throat, trying to stave off the cramps that now plagued both legs, my arms, my neck, and my back. While you can hide your weaknesses in shorter races, ultras will always expose them. I know the last year has taken a toll on my muscle tone and strength and this is something I really need to work on if I want racing to be remotely pleasant. I wanted to walk desperately, but I really wanted to finish quickly and just be done with it. So, I kept pushing as hard as I could. I briefly thought I could break 9:30, but then I realized it was not going to happen. I knew I could break 10 hours, and did so in 9:34:15. 


I have never been so grateful, thankful and relieved to finish a race. When I finished the Vermont 100 last July, I was ecstatic. Everything hurt, but it was a different kind of pain. I was well trained and had a great race. This time, it was painful and difficult most of the way through. About two miles prior to the finish, I finally let myself think I was going to complete the race, and tears welled up in my eyes. I would not let myself cry until the finish line. As soon as I crossed the finish, and saw Race Director Ben Reeves coming towards me with my medal, I started to cry. 

I finished as fifth female, and second in my Age Group. Here I am with RD, Ben, who gave me my award.




So many emotions welled up at once. I thought about everything I had been through this past year since last year's 100k, and how much it all meant to me. I thought about everyone who had supported me. I thought about the list of cancer survivors I brought along so I could remember them and run in their honor. I thought about how I almost dropped, but did not and fought through to the end. I thought, I may not be 100%, but I have not allowed cancer to beat me nor to define me.

While everything did not go anywhere near perfectly this time around, I had an amazing experience. As I have discussed with other runners, it is not the races that go perfectly that show how tough we are. It is the races that go south, whether we ultimately finish or not, that really show our inner strength. How we handle circumstances when things do not go as planned really reveals so much about ourselves, and also teaches us so much about ourselves. I am still processing things, but one thing I learned while out there yesterday is that while I love competing, I really had a lot of fun when I spent time running with Heather, my husband and with Dimitar. Sometimes pushing the pace all on my own is really fun for me. Yesterday, I had the most fun when I spent time chatting and working with other runners. There is a place for both intense competition and for fun and joyful companionship in running. Neither are wrong and both can be fun, depending upon the goal for the race.

A lot went wrong yesterday. I think I got behind on nutrition, fluid and electrolytes early in the race. I pushed the pace too hard too early. I was not trained to run fast and I could not maintain the pace. The heat was monstrous and small mistakes are magnified when the weather does not cooperate. I should have taken it conservatively from the start. Really, what it boils down to is that I am out of practice and not in the shape I was in before. These are mistakes that can be fixed, but I had to go into damage control late in a long race. That is not fun and is quite demoralizing. I kept pushing the electrolytes and was able to turn things around enough to continue and even run, albeit slowly.

I am so appreciative of everyone who has sent words of support and encouragement as I have endeavored to return to running ultramarathons.  Knowing I had people following me and cheering me on kept me going. I want to send a special thanks to my running partners who have shared many miles with me. Thank you to all of my friends, both long term and new friends. I love you all and am so fortunate to have so many amazingly supportive people in my life. Thank you to my family. My parents, kids and husband all think I am insane but they have supported me unconditionally. They may not always understand why I want to run crazy distances, but they know it is something that makes me feel happy, whole and alive. I am forever indebted to my husband. I am amazed that we ran into each other at a mutually crappy moment yesterday, but we both encouraged and pushed each other. What a wonderful and supportive partnership we enjoy.

Today there is not an inch of my body that does not hurt. I will be spending the day sitting on an ice pack. My hamstring is tight and painful, but hopefully it is just a minor injury that will heal with rest, recovery and some rehab exercises. As for what is next, I will be focusing on making myself stronger physically for the next few months. I still have a long way to go.  

Finally, the finish with Vanessa, who did awesome in her first 50k.


With Stephen. Words cannot adequately explain how much he means to me.









Saturday, September 27, 2014

Race day morning

I am up though not quite ready to go. Today is race day. We will be out the door soon. I am a little nervous. I feel like when I had surgery months ago, I went to sleep as Tonia, in brain and body, but woke up with someone else's body that I have been trying to live in ever since. I will be running 50 miles today with that different body. Whereas I usually had a good sense of how my body would react to certain stresses, I am not sure how this new body will handle today's race. I am not sure how my body will respond to all of the stressors it will face today. My digestive tract is not the same as it once was and running ultras can be a real challenge with digestion is not functioning properly.  It is going to be very hot and I do not handle heat as well as I used to. Nevertheless, I am going to get out on the trail and give it my best shot. I hope my best is good enough for finishing 50 miles while having fun along the way. Will post an update on the other side.

Sunday, September 21, 2014

Unicorns and 50 milers

"Our doubts are traitors, and make us lose the good we oft might win, by fearing to attempt"- William Shakespeare 

Our doubts are traitors. Traitors. Our self doubt sabotages our ability to take chances in life. We all have self doubt. We all have moments of wondering if we are up for a task. Can I pass that class? Can I succeed in that job? Can I climb that mountain? Can I finish that race? More often than not, the answer is yes. I truly believe that we are often our own worst enemies. We allow our doubts about ourselves and what is possible to fill our heads so that we do not even attempt things that we want to try. Soon, we find there is no time left and we wonder why we had not attempted those things we wanted to do. It sounds cliche but failure really is not the worst thing. Not trying is so much worse than never attempting something in the first place. We end up with a life of unfulfilled goals mainly because we merely doubted ourselves so much we were too afraid to even try.

Anyone who runs long distances knows the phrases "taper nutty" or "taper psychosis". I began tapering last weekend and started loosing my mind just a little bit. As I cut back on running, my idle mind has too much energy and it goes to unhelpful places. Running is absolutely essential to my mental and physical well being. It keeps me feeling calm and healthy and well. I know tapering is a key component to a good race, but that cut back in mileage leaves me feeling antsy and amped up. That is actually part of the point. On race day, you want to be antsy, amped up and ready to go so you run faster. However, knowing I am not particularly well trained, and knowing I am not fit, and knowing I have an injured hamstring is not helping my frame of mind. I was lying awake in the middle of the night two nights ago, my muscle literally waking me up with its throbbing, thinking, "Maybe I should be a DNS (did not start)?" 

The race is in six days. A theme over and over in my pre race build up has been my own mind doubting my ability to do this, or my own wondering why I have signed up to do this at all. Privately I have told my friends that I do not know if I will run any more ultramarathons after this 50 mile race. I know it is common to have those thoughts while at the peak of training. But I really have never pondered quitting ultramarathons before. I have said, "maybe not another 100, but I love 50 milers!" I truly do love the fifty mile distance! But I am so tired now that 50 seems really daunting. My enthusiasm has waned. Whereas I used to love nothing more than spending all day out on the trails with people I love, now long runs leave me completely drained rather than energized.

This week, I was finally fully able to fully recognize why it had been so important to me to sign up for this race. It all boils down to wanting running an ultra to be a choice. wanted to choose running ultras, versus my CANCER making that choice for me. am the decision maker, not my illness. 

I remember how truly scared I was going into surgery that I would never be able to run long again. Going into chemotherapy, I did not know what the long term effects would be on my body. I realize that it was important for me to run an ultra NOW as opposed to waiting until next year because no matter how ugly it is, I had to get that first post cancer ultra under my belt. I will not put stuff off that I want to do because I do not know what the future holds. If I never run another ultra again, I am hopeful that it will be because I made the decision that I no longer wanted to run ultras and not because CANCER made that decision for me. In six days, I will be running 50 miles because I still have that choice. 

I am one of the lucky ones because not everyone in my position has a choice. I do. So I choose to run 50 miles for now simply because I can. With a disease that often offers grim statistics, I want to be the person that gives someone a reason to be hopeful. I am such a very rare patient. My doctor said he would likely never see another patient like me. I jokingly call myself a unicorn because I am almost a mythical creature in terms of PC. Because I am lucky enough to be a unicorn, and I have a good shot at survival, I feel that I have an obligation to continue to get the word out about pancreatic cancer. I will continue for as long as I am healthy, well and able to do what I can to bring hope for others who have been given this diagnosis, and to raise awareness for this very deadly form of cancer. I have been given a mission and a purpose. 

Photos from my week. Running with fellow Cancer warrior Tori!
 

Running with one of my favorite people on the planet, Tracey. My poor long suffering husband was there, too. He took the picture.


Running with Peyton, who runs sixth grade cross country.


And a photo from her meet. I am such a proud mom because she raised the bar for herself, worked her butt off, reached her goal, and got positive feedback from her coach. Hard work always pays off.



Six more days until my race. Now I have to banish my doubts because they are indeed traitors. I will be the less than graceful unicorn running on behalf of every other person with pancreatic cancer. I am betting on not only finishing but also on winning the "half a pancreas, spleenless, running with a chemo port" division. I am pretty sure that's a thing! I am working on my list of cancer patients/survivors that I will bring with me to the race for inspiration. If there is someone you would like me to include, please contact me! 





Saturday, September 13, 2014

Dedicated to R, who made a difference in my life

This year, on the day of the Boston Marathon, I went in for chemotherapy. On that day, I was wearing my own Boston marathon shirt in solidarity with the people who were running the race the year after the bombing at the finish line. My shirt happened to spark a conversation with another gentleman who was in for chemotherapy also. I had really not talked with any other patients up to this point, but as fate would have it, I met R on this day. Our conversation turned from the marathon to our cancers. I asked what kind of cancer he had and he said, "pancreatic". I couldn't believe it. I had never met anyone with pancreatic cancer to this point before. I told him, "me, too!" This was the beginning of a brief friendship, but a friendship based upon the understanding that we were united by the same diagnosis. Our lives were very different. We were very different people, and yet just by virtue of having been diagnosed with the same form of cancer, we understood certain things about each other. Because there is no support group locally for pancreatic cancer, we became our own support group of two.

We talked that day and exchanged emails and phone numbers. I knew from the start that R was very sick. His cancer had spread already. He was not eligible for potentially curative surgery. I represented best possible case scenario for a patient with pancreatic adenocarcinoma. I also knew that his illness would eventually kill him. We did not say that directly to each other, but we both knew what our diagnoses meant.

We exchanged email messages, and spoke on the phone several times. We sat together a couple of times at treatment so we could talk. His chemotherapy combination was much more toxic than mine. He had very significant issues with side effects. He was in a wheelchair. I continued to run and live my life. I wanted to talk to him and listen to him and to connect with him. He was the only other PC patient I had had the privilege of meeting up to that point. While there was so much that was different about our cases, I felt comfort in talking with R, and in knowing that we both had an understanding of what it feels like to be told you have pancreatic cancer.

I know very little about R's life prior to his diagnosis. I do know that we had many conversations about how getting diagnosed made us love and appreciate everything about our lives so much more. Every moment seemed sweeter. Every day we got to live was a good day. Every experience meant something to us. Time and again, while going through chemotherapy, I have been reminded how people who have been diagnosed with a potentially fatal illness seem grateful for whatever time they have. R, despite the devastating diagnosis and side effects he was experiencing, never once said he was angry or that his circumstances were not fair. He and I only talked about how much we loved our lives.

We spoke not too long ago and I knew it was only a matter or time. I learned yesterday that R passed away. It felt like a punch to the gut, even though I knew it would happen. While his tumors had initially responded to chemotherapy, the regimen had been so tough on his body, he was unable to continue treatments. He took a couple of breaks while I knew him, and I knew this last time he would not be restarting treatment. I had hoped and prayed for a miracle, but I knew he was suffering. I am so sorry there was no miracle to be had for R.

I am so glad I got to meet R and have our brief but meaningful friendship. There have been many days where I felt miserable, but I went out for a walk or a run and thought of him, prayed for him and dedicated my run to him because I knew his journey was much harder than my own. His love of life, and our conversations have stayed with me as a reminder to always love my own. 

I am experiencing survivor's guilt. Why was my cancer found early? Why am I one of the very few "lucky" ones? Why do I get a chance at living a long life when most people with pancreatic cancer do not? I am no more worthy than anyone else who got my diagnosis. With a five year survival rate of 6% for all stages, there are few of us left standing. Why me and not the others? There is no reason, of course, other than luck. I only hope that I can use whatever time I have left to make a difference in some small way. There has to be a reason going forward why I am still here and so many others are not. I will never forget R. He and the countless other PC patients who have not been so fortunate as I have will be a constant reminder to me that I am here for a reason and my time must serve a purpose.

I am scheduled to run 50 miles in two weeks. Every mile of that race will be dedicated to another cancer patient. I am making my list of dedications this weekend. Their struggles are my struggles and I will draw my strength from our shared journey in life. 

Sunday, September 7, 2014

Why am I doing this?

I had some good news this week. First, my chemo port is officially scheduled to come out October 7th. I am looking forward to getting this foreign object removed from my chest. I am grateful that I had it, because it saved my veins, but it really is time for it to go. I also discovered that my hair is starting to fill back in where it had thinned out during treatment. My receding hairline will hopefully blend in with the rest of my hair in a few months.

Life is pretty full and I am enjoying getting back to my regularly scheduled activities. Last weekend, I spent a good portion of my time volunteering with my family for the American Discovery Trail marathon. This was our second year volunteering for this race.  Chatting with other athletes about our mutual passion for the sport brings me joy. The energy and enthusiasm found at races is infectious and I love interacting with runners, whether they are out to win, they are first time participants or they fall somewhere in between.

I worked packet pick up all day Sunday with my daughters, and some other fabulous volunteers, which made it extra fun.


Then the next day, my family and friend Tracey ran aid station #4 at Baptist Rd. 




I had to be out every night this week. I had a board meeting on Tuesday, followed by meetings at both girls' schools Wednesday and Thursday evenings. I put in a few hours volunteering at school. I also supported the youngest runner in our family at her first cross country meet.


These are all things that I both needed and wanted to do. But as my energy level fell off a cliff this week, and I thought about this race that I had signed up for, I wondered why I had not signed up for a race of a shorter distance. My doubts took the form of a question, "What the hell was I thinking signing up for a 50 mile race that takes place three months after the end of my cancer treatments?" My training has not at all gone according to plan. I am getting miles in, but I haven't been able to follow any sort of program. My long runs are not as long nor as hilly as I would like. I hurt my hamstring in NY and the injury continues to inhibit my ability to attempt any sort of speed workouts. My long runs have left my feet and legs throbbing and I have felt completely drained after finishing them. As the doubts crept in this week, I wondered can I really do this? Why do I want to do this?

Then I thought back over everything I have been through, from the surgery and recovey to the chemotherapy. I remember wondering when I went in for surgery if I would ever be able to run long again. Through chemotherapy, it was always my goal to come back and train for an ultra. I thought about it every single week during treatment. I wanted to come back to as close to my former self as possible, and that is exactly why I signed up for an ultra. I have nothing to prove to anyone but I have a lot I still want to prove to myself. Maybe I bit off more than I could chew at this point in time. But for now, I am glad I signed up for another ultra. I am glad I tackled something that was a goal through my cancer treatments, because I know I would have been disappointed in myself if I had not at least made the attempt. So while nothing has gone optimally, and I have still been so very tired, and I am nowhere near as fit as I once was, I have not let my doubts or fears dictate whether I at least attempt to reach my goals.  Maybe I will be successful. Maybe this time around I will fail. Either way, I learn something new about myself through the process of training and daring to toe the line despite my fears. 















Sunday, August 31, 2014

Living With Intention

Here is what I learned this week: I am much better able to handle being the patient than the worried wife. We had a scare with my husband this week that forced him to take only his second sick day in the 12+ years we have been together. I do not want to go into details because that is his personal business, but we ended up spending most of Thursday at the doctor's office and then waiting for testing. Early in the day, I was concerned by the sudden onset of his symptoms. I jumped into action, making phone calls and coming up with a plan of action. Throw a problem at me and I want to take charge and fix it. While I was almost certain the symptoms were brought about by something fairly benign, as I raced around to pick up kids and attend sports meetings, I thought, "well, what if it is something serious? What then?" That fear was so much worse than anything I have felt for myself over the last year. I can handle anything that happens to me, but I cannot bear the thought of my husband or children being sick or suffering. We do not have clear answers yet as to what happened. There will be follow up with a specialist, but is symptoms have improved over the last few days. 

I remember early on in the process of my diagnosis, Stephen saying that he would rather go through my surgery and treatment in my place. I had an instantaneous almost angry reaction of, "NO WAY! Don't even say that!" Not that we had any choice in the matter, of course, but when you love someone deeply, you really would take pain on their behalf. On Thursday, I found myself in that same exact spot, but with our roles reversed. I found myself engaging in silent prayer and bargaining, "Please do not let anything be wrong with him. I could not face the world without him." It is true, I would rather it be me. I can handle anything, except the thought of seeing him or the kids suffer or losing them. I am pretty confident he is fine and is going to be ok, but this was frightening and emotionally draining. Seeing my husband or children sick or hurt is my kryptonite.

On Friday, while still exhausted from the emotional upheaval of the previous day, I got up and ran long. I have a race I am training for after all. I also had an appointment with my oncologist in the afternoon and I needed to get out of my own head for a while. So I hit the trail for a therapeutic long run of 23+ miles. I would have liked to have run farther, but I ran out of time. I shared some miles with my husband, and ran some alone. Along the way, we saw this mama and her babies, who still had their spots. We had to stop and snap a picture. 


I squeezed in the most mileage I could before running home to shower and change. Without going into too many details, the appointment went well and I currently have "no evidence of disease". Obviously, this is exactly what you want. It is really good news. But Stephen and I left the appointment still feeling a bit uneasy and not entirely reassured. I have been referring to what I feel as "cautiously optimistic". I am not jumping up and down nor am I celebrating...yet. The doctor said it is completely normal to have emotional distress related to testing and follow up appointments, and that I may never feel completely confident again. He also said that with every hiccup I may fear the cancer has returned. I know so far, this has not been the case for me. Whenever I have a GI issue, I just assume it is my new body still trying to figure things out. I truly do not interpret every little twinge as something bad. I do wonder, though, is anything lurking in there that will not cause symptoms until it is too late? There is nothing I can do about that unease except go to my follow up appointments and hope for the best. I will not live in fear but I also will not take my health for granted.

I wish I felt like screaming from the rooftops that I am cancer free, but I just do not feel ready to do that. All I know is that for today, the radiologist did not see any signs of cancer. And so I will do the things I want to and am able to for today. I do not know at what point I will feel confident. In a year? Or two? Or five?  While on a run, I started thinking about what I would do if I knew I had one year to live. How would I spend my time? Who would I choose to be with? I do not think these things because I believe I only have a year, but because I used to assume my time was nearly infinite. Now I make no assumptions of that sort. Maybe if we all knew we only had a year left to live, our lives would look and feel exactly like they do now. Or maybe they would be entirely different. 

I am trying to make very conscious decisions about what I take on. I like to help and do things for others. But I read something recently that reminded me that every time we agree to take one thing on we will have to say no to something else. No matter what, our time is not infinite. Now I am trying to ask myself before I say "yes" to things, is this really how I want to spend my time? If I were going to die in a year, would I be happy that I chose to do this or would I be angry about having wasted my time? This is a constant exercise in learning not to be a people pleaser but in learning to do what is really important for me and my family. It is a daily challenge to make each decision very consciously, but I think it is really important for my own mental well being.

So I continue to run and train and spend time with people I love. This week, I ran with Jenny, Debby, Tracey and my husband. They are all people who I love dearly and I am grateful for every opportunity that I get to be with them. 

This is Tracey and I at Spruce Mountain Open space.



I ran back to back long runs Friday and Saturday. Friday was a 23 mile run and on Saturday, Stephen and I ran 18.5.



We have a couple more weeks of long runs and then we have to taper for our races. Spending time running together is our quiet way of celebrating the good news we received this week. Running has taken on the feeling of a sacred ritual that binds us together as we struggle against obstacles and challenges, both in life and on the trails. Every run is both ritual and celebration. This is how we choose to spend our time together, and I have never regretted a single run we have shared.