So much can happen in a week

Looking back, I realized he sent me a Snapchat Friday, just one day before he died. I don’t know what time, or even what it was of, but he doesn’t Snapchat. Life just moves to fast to stay on top of it all. So much can happen in a week – from a snapchat Friday, to going missing, to being found dead outside his home, to Friday, one week later, being buried outside of his childhood church.

Life just moves so fast.

I think the strangest part of it all, is that no one he’s close to knows who I am. We shared a strong friendship for a couple years, but not one that ever allowed us into each other’s circles. My roommate met him once, but other than that, should the tables be turned, I don’t know that anyone in my life would know who he was either.

I showed up a little before the ceremony, ushers were frantically pulling out chairs in the back entrance for all the people crowding in. I quickly claimed a seat in the very back row, behind the entering groups of his coworkers and fraternity brothers. One usher looked at me and asked, “Just one?” I nodded yes, and he replied, “I have one seat inside, it’s right at the front.” With a breaking face and cracking voice responded, “No, I’d rather sit in the back.” I could barely control myself, I couldn’t imagine being in the center of all the emotions with his family, with an upfront view of him the entire time.

Maybe it was a sign, that through the years I was still important to him and he wanted me up there. That I did fit in amongst the people I’d never gotten a chance to meet.

I just wanted to hide.

I have to question if this is normal, a part of growing old, that people around you die, all the time. In the last two and a half years, I’ve lost 4 friends near or younger than 40: a murder, two cancers, and now a suicide. A coworker announced this same week that he has early stages of Multiple Sclerosis. Is this what’s a head for the ‘lucky’ ones who get old?

The church was full, with cars lining the gravel road up the hill to the church. I thought to myself as my heels dug into the muddy gravel on the chilly walk, “The only time all your family and friends are ever really together is a funerals and weddings.” It’s a tragedy that all these people, all the love and fun stories, are only brought together in these two scenarios. One of which you don’t even get to experience.

I’m angry, as I am when I’m robbed of people I care about too soon. However, I’m driven now, more than ever, to have my party. I don’t like to call attention to myself, but it’s important to gather the people you love. I want to see my people I love while I’m still here.

Please join me on November 20, from 2-4 in Lincoln for my 30th birthday party.

I love you all, let’s celebrate for the sake of life. To force love and happiness into this place where sorrow is constantly at your heels.

Read about my plans for the year I turn 30.

Testing my nerve (damage)

Today I found my first grey hair. At least, I think I did. My hair is too fine to confidently determine. I saw a short strand this morning in the sun, and found the same short piece tonight. Either it’s white, or very very light blonde.

When I saw is this morning, I was ecstatic. “I’m getting old! I’m still having new experiences! I get to live through these changes!” I thought to myself as I drove through traffic, late to work with the windows down listening to Kanye West. I find the irony that this discovery was made while in a moment of feeling like a teenager.

Coincidentally, this monumental discovery was made on the same day I’ve finally mentally committed to the location and date to my 30th birthday. (Sunday, Nov. 20. Stay tuned).

I’m so close to 30! I don’t know that there is really anything between me and my celebration now. Well, other than my poor ability to plan events and actually make these commitments. But ya know, the small stuff.

I’ve also started granting myself gifts. I’m not a huge birthday person, but I’m not holding back this year. I’ve started violin lessons. Ultimately, I want to play fiddle, but need to learn the basics of the instrument before I can hone in on a specific style.

It’s exciting, it’s calming, and I only know two notes.

Admittedly, I’m nervous for how far I can get. For the most part, I’ve accepted that the nerve damage from chemo to my hands and feet have recovered as much as they probably will. I’ve accepted this as my new normal – my feet still regularly tingle, and I honestly don’t know how much I am not feeling in my hands. I know when I’m touching something. Sometimes I can feel textures, often times I can’t.

I’m scared I won’t be able to feel the strings.

At this early stage in lessons, I’m still just learning to hold the instrument and how to move. At some point, I will need to learn how to hold the strings. I never really had the conversation with my instructor, where I told her that 2 years ago I suffered enough nerve damage and loss of touch that it was difficult for me to type, and that I would regularly loose shoes that weren’t strapped to my feet. I’m nervous I won’t be able to tell how many strings I’m touching or where, only that I’m touching something.

But it’s my present to myself. I remember the first night I fell in love with the fiddle – it was at a Trampled by Turtles concert almost five years ago. Their fiddle player is amazing live. Watch this video.

Since then, I’ve had other encounters: I’ve seen this same band several times, and drug my friends to the Nebraska Fiddle Championship (sounds way cooler than it was). My church had a Bluegrass band play one morning in the last month or so, and it ignited my fire.

Also on this first day of my grey hairs and party planning commitment, I received an email regarding an open spot for a 2016 FDX trip. It’s not one that I want to go on, but it was just one additional factor to align towards pushing me to my 30th.

Haven’t read about my big birthday plans? Well, I’m still working on my 30th birthday bucket list, but you can read about my fundraising goal for First Descents.

60 days to go!

Another FD Perspective

In November I turn 30 and approach my halfway point to cancer-free. Help me attend an international First Descents trip by donating to my fundraising page

As I anxiously think about how I am going to provide enough content to keep talking about how much this First Descents trip means to me for three months, and brainstorm creative ways to fundraise for three months, I coincidentally read to the point one in my fellow FD1 camper’s book when describes her Moab experience. (Yes, one of my fellow campers published a biography, how cool is that? Check out The Courage Club, profits will go to help her pay for her continued treatments.)

I can’t help but reflect how similar my experience was similar to what she so eloquently describes –

“On top of that, cancer had stripped away so much of my identity that I no longer knew who I was. I knew Katie-before-cancer; I knew Katie-as-a-cancer-patient; Katie-after-cancer was a totally new person. I couldn’t just pretend that the last year hadn’t happened, but I also didn’t want the rest of my life to be defined by cancer. I was truly and deeply lost for the first time in my life.

It was at this precise moment of feeling confused and overwhelmed that I embarked on a trip with First Descents. First Descents is an outdoor adventure program that offers free, week-long trips of surfing, kayaking or climbing to young adult cancer survivors and fighters. I signed up to go rock climbing with them in Moab, Utah.

Arriving at the airport in Moab, I was a ball of nervous energy. I didn’t know if I’d get along with the other cancer fighters and survivors. I didn’t know if I’d be able to be myself, or even figure out who that self was. And mostly, I was afraid I wasn’t strong enough to get up that rock.

By the end of the first night in Moab, I knew I had nothing to be afraid of when it came to my fellow cancer fighters and survivors. They got me. They got my hang-ups, my fears, my dreams, my aches and my pains. I felt safe and understood around them in a way that I hadn’t since I was diagnosed. They were also fearless and determined. I watched them as they climbed the rocks without hesitation, getting banged up and cut up as they went, just powering onward and upward. They gave me the inspiration to believe that I could do the same.

My first few climbs were exhilarating. My body wasn’t perfect, but it was getting me up those rocks. I wasn’t failing, wasn’t falling; I was reaching the top, to be rewarded with incredible views of the Colorado River against burnt orange sandstones for as far as the eye could see.

It was on the second day, however, that I really discovered the beauty of what First Descents can do for your soul.

I’d decided to tackle what looked like a relatively difficult climb. There was a small ledge halfway up, and I’d consoled myself with the idea that I should be able to climb at least to the ledge, and could turn back there if need be. When I got to the ledge, however, I decided I wanted to go all the way. (Plus, I don’t think my chorus of supporters above and below me would have let me back down so easily.)

So, I started my way up the second half of the the climb. It was difficult, but I was getting creative, finding ways to scoot myself up, scrounging for every inch I could get. It wasn’t until about three feet from the top that I realized my muscles were completely spent. My legs and arms were shaking and I could not, for the life of me, reach the last big hold to pull myself to the top. I took several breaks, letting myself be held by the ropes while I tried to get my body ready to give it a go once again. I would rest, come back, and spend several minutes trying to work my way out, only to have my muscles fail me once again. I was getting increasingly desperate, wishing more and more that I could just quit. I didn’t see how I could possibly overcome this painful and difficult slump I’d gotten myself into.

Fortunately for me, I had a friend just a few feet away at the top, and she was not about to let me give up. I finally realized that I just had to dig deep and find the strength to keep going. I took a moment and allowed myself to pull up my most painful memories from the previous year. I thought about all of the physical pain I had endured against my will. I thought about uncomfortably long days spent just trying to survive another round of chemotherapy. I thought about the moments in the hospital recovering from my double mastectomy, and how hard I had to concentrate to live through the pain.

I felt a hard-won resilience coursing through my veins. If I could endure that pain, against my will, then I could endure this pain. I got back on the rock and this time, instead of being afraid of the pain and pulling back from it, I went into it. I allowed myself to really feel the strain in my muscles, to deeply experience the stress on my body. I used my knowledge of my own resilience to move through the pain, to move beyond it, to find those last few inches until my hand could grab onto that last big hold. In a moment of complete and utter relief I grabbed onto the hold and pulled myself up.

I have rarely felt so accomplished in my life. I conquered so much more than just a difficult climb that day.

I found myself through my body on that trip. Before it, I hadn’t understood just how resilient I’d become. Because of what I’d endured mentally and emotionally, I was now physically more capable. I had wondered who I was after cancer. How could I be someone who had cancer but was not defined by it? I found my answer out on that rock. Cancer had shaped me for the better. It had made me a stronger, braver, hardier version of my former self. It had given me this well of emotional, mental and physical resilience that could not be taken from me.” – The Courage Club (Katie A. Campbell)

In November I turn 30 and approach my halfway point to cancer-free. This year will be a celebration of life, but also a new experience I can lean on as the scans and tests continue for at least the next two years. Help me attend an international First Descents trip by donating here: https://support.firstdescents.org/clairej30

Learn more about Katie, and purchase her book The Courage Club.

FDX Announcement

Spoiler alert – check out my fundraising page here – support.firstdescents.org/clairej30

During the last year, I’ve been thinking about attending another First Descents trip. What is First Descents? A group dedicated to giving young adults who have been given a cancer diagnosis a shot at reclaiming their lives. Check out their about page and their pretty kick-ass brand video here.

During the First Descents experience, young adult survivors and fighters are empowered through conquering legitimate outdoor challenges to push their limits and face their fears, and by doing so, they are able to regain the confidence and self-efficacy lost to cancer.

My first year off treatment, I was selected to attend an incredible trip rock climbing in Moab. (Read my blog post recap from 2014, or my facebook photo album). What I find amazing, is that the impact of that adventure has changed me in ways I’m still discovering. So many times in the last two years, I’ve leaned on a First Descents experience to drive who I’ve become now. Things like confidence, exploration, and adventure are now ingrained in me as I balance normal life with an extra layer of grief and anxiety.

So what’s the point?

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Moab 2014

In November I turn 30. During my diagnosis and treatment I focused on my 30th birthday. Being able to visualize a future just three years a head of me gave me peace and grounding while going through treatment. When my entire life felt like it was put on pause and I was confined to bedrest, I set my hopes on turning 30, anticipating that if I was lucky enough to have three more years, I would have a chance to experience so much life I had taken for granted. Knowing I had this time before me gave me more strength and optimism, and I already was planning a celebration of life with the people who had supported me along this path.

In December, I will also celebrate my three-year cancer-free-iversary. However, the stakes continue to get higher as time increases since my last treatment. It will be three years, but it will only have been three years. Regarding my specific stage of diagnosis:

…some 30% to 40% will recur or develop a second bowel cancer. Most residual disease will manifest itself as recurrence within 3 years, and almost all cases will be diagnosed within 5 years of initial diagnosis.

Help me usher in the start of the year I’ve been looking to since I was 25 and held on to while my life was being ripped apart. This will be a celebration of life, but also a new experience I can lean on as the scans and tests continue for at least the next two years. This is my half-way point to being cancer-free.

The next step in the First Descents path is what is called an FDX Trip – generally an international trip continuing the theme adventure activities. In 2016, the organization took survivors hiking through Thailand and trekking in Africa. I want to do something as equally monumental. To qualify for an FDX trip, I must personally raise at least $2,500 on my fundraising page. 2017 adventures are announced late in 2016, and I want to be prepared to reserve a spot!

From now until my birthday in November I will be working on this goal to kick off my best year yet.

Help me. Donate to my fundraising page here – support.firstdescents.org/clairej30

Donations pay for other young adult cancer survivors to go on their first trip with this group.

My Life in Sprints

The good news about infrequent posts, is that I’m not so emotionally distraught that I don’t need to use posting as an outlet for emotions. I just wanted to post a quick update, as well as some great things going on. Life is about appreciating the good, and not just evaluating during the bad!

After my January scan, my doctor decreased my check-ins to every six months, down from every three. This makes my next test in July. I feel like I’m back in full-sprint mode, trying to do so much in the between six months, during which I try convince myself might not be my last span of normalcy. At work, the joke is that I’ve been splitting many of my large projects into sprints, to help make them more easily digestible. Apparently, I’m doing this in life as well.

So, it’s spring, my favorite time of year. I held a Spring’s Eve party to ring in the best season. All plans in the foreseeable future exist in a time of shorts and t-shirts.

I’m excited for my cousin and her fiancé, along with many family members from across the country, to head to Lincoln for her bridal shower in the next few weeks.

My good friend Jenny and I are heading out to southwest Utah at the end of April, and taking on a couple of huge hikes, including one overnight hike. I hope when people ask how we planned, I hope my first thought isn’t, “well, we talked about poop a lot.”

I try to be open here, so let me explain. As a reminder – I have no colon. At best, I have to go #2.5 five to seven times a day. Nights don’t get excluded from this schedule, neither do trips to remote locations. I have spent the last two years since my surgery, researching, purchasing supplies and preparing myself for responsibly managing my waste on camping trips. This means: “Pooping” in bags, then putting said bag back into my backpack, and hauling around with the rest of my gear. While camping overnight, this means several middle of the night trips spent rummaging for shoes, flashlights and utilities, walking a safe distance from camp while not envisioning a sneak attack by a bear or wolf in the middle of the forest. Meandering back, then still being sleepy enough to fall back asleep, only to do it in another couple hours.

Sounds great, right?

I think the scariest part, is how devastated I would be should something go wrong – honestly thinking about pooping on myself, spilling the waste all over, puncturing the bag, etc. I would be horrified, and ultimately devastated that my life is still so impacted about something as minor as poop. It would be a reminder that I’m not normal, and am now permanently physically incapable in some respects.

The trip will be great, and I’m sure once I conquer this very small detail of the entire trip, I will laugh about how nervous I was and how big I built this up to be.

In May, I’m heading to my same cousin’s bachelorette party in New Orleans. I’m so honored and excited to be sharing in such an important time of her life. In June, I head south again for her wedding. I’m really looking forward to seeing my entire family, in such a happy time of celebration. Sprinkled in between it all are all the small things that make a summer – kayak/fishing trips, gardening, hikes and small town visits, and all the random places my naturalist training is taking me.

This will bring me up to July, where as fate has it, I have no solid plans beyond. Not even a football game marked on my calendar, or a trip to start planning for.

Just another opportunity to pack full of plans to get me through the next sprint to January.

Good-Bye 2015

It’s a little late, but I like to spend some time really thinking through all the experiences that happened in the past year as it closes. I love this practice. It’s incredible how many good things fit into 365 days, but it’s so easy to lose track of some, especially when not all of them can be remembered through photos.

Thanks, everyone, for another year of fun and love!

 

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  • The first of the year 2015, I still had a chest port in. When my scans came in clear, I prepared myself for surgery to have it removed, completing the final step to returning my life to normal.
  • Just one week later, I became ordained and had the honor of legally wedding two of my very good friends.
  • Toward 2015-01-31 14.55.53the end of January I introduced a small group to the Slowdown concert venue in Omaha, a great show by the Cold War Kids!
  • I rounded out January by again attending the duck races. One of Blake’s good friends from Chicago drove in for the event.

 

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  • The beginning of February, I boarded with my parents on a  7-day cruise down the coast of Mexico, stopping in Cozumel, Belize, and the Cayman Islands. We did a lot of activities – swimming with dolphins, exploring ancient ruins, snorkeling beaches, – I got to check of a bucket list item and held a baby sea turtle! One of my favorite things was waking up every morning to room service coffee, and watching the sun come up over the ocean from our room balcony.2015-02-22 10.11.11-1
  • My gift to Blake last year was ‘adopting’ the red pandas at the Lincoln Zoo. At the end of February, him and I attended a personal meet and great with them!
  • One HUGE goal I accomplished was paying of my student loans. Now on to my mortgage!

 

MARCH

  • I was inspired after attending an acoustic Jason Mraz show at the Orpheum with Nina. I soon after, I adopted his album title as my motto for 2015 – YES!
  • Blake and I took a shot at starting our garden vegetables inside. 2015-03-28 12.52.51-1While they produced little, I loved my little plant babies to the point I put a heating pad on them.
  • I said farewell to winter while down in Kansas City with Zach and my brother’s family. I found my new favorite brewery on this trip – the Weston Brewery, which also houses the world’s largest ball of string.

 

APRIL

  • I celebrated accepting a new job. While it was a difficult decision, I looked forward to a new challenge in my career.2015-05-25 19.33.17
  • Zamboni fiasco.
  • Between jobs, I took just a handful of days to repaint my house. Despite a few rain delays, with help from Blake and his parents, I finished it on time.

 

MAY 

  • 2015-06-17 20.18.37-2Blake and I created a vegetable garden. It took several weekends of ripping out existing landscape, renting a sod cutter, cutting and staining fenceposts, and preparing soil.
  • I spent a weekend visiting with my Aunt Indigo from Arcata, CA and my Aunt Julie from Fayetteville, AR. We spent time looking at art galleries and sipping coffee in downtown Omaha.
  • At the end of May, I volunteered at the Tour de Cure for diabetes in Ashland. I was so grateful to be able to help a friend who had helped me so much!

 

JUNE

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  • A small group of former coworkers road tripped down to Starkville, MI to celebrate Sarah getting married. We stopped at so many roadside attractions along the way!2015-06-13 14.38.53 HDR-2-edit
  • My good friend Neil married his match, and Blake and I attended their beautiful events! Suzanne and Mike, who I wed in January, also officially hosted their celebratory reception. June was the month of love!
  • Ironically, I visited the Sheldon Art Gallery only after I stopped working at the University. Hot temperatures shortened Blake and my outing and we instead lunched downtown.Screen Shot 2016-01-10 at 8.28.37 AM
  • My friend Jenny turned 30! She invited me along on her celebration of touring vineyards in the area.

 

JULY

  • 2015-07-18 11.14.33I walked the halls of Millard South for our 10-year high school reunion. I was mostly interested in seeing the building and how it’s changed in 10 years. I found out that not much has!
  • 2015-07-10 08.19.11My friend Amanda invited myself and my mother along for a mother-daughter kayak trip down the Loop River. I fell in love and bought my own later this month!

 

AUGUST2015-08-27 06.18.52

  • I went on my first Swanson Russell work trip to Providence, RI. Because the trip was short, I woke up early to see as much of the town as I could before heading home.
  • The group that celebrated in Starkville gathered one last time for lunch before bidding Sarah goodbye as she moved to Seattle to pursue advancing her degree.
  • 2015-08-29 11.47.31-edit.jpgThe end of August was spent in Kansas City visiting Austin, Katy and Charlotte. We stopped at the world’s largest baseball, the Weston Brewery, and played Top Golf.

 

SEPTEMBER 

  • 2015-09-22 12.56.00I spent most of September doing things I love – kayaking on the weekends, biking to work, and I even found my favorite tree to eat lunch under during week days.
  • The Hozier concert at Pioneers Park was spectacular. What made it better was rocking out with so many people close to me.
  • I traveled to Dallas to see my cousin Kelsey 2015-09-05 12.15.10and meet her fiancé Brent. We had so much fun eating a ton of food, visiting breweries, walking public gardens, and doing many things Texany.

 

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  • Zach and I visited our friend Nick in Boston. We explored the city, drove out to the very tip and spent the day in Providence Town, went whale watching, had our Tarot Cards read in Salem, and ate lots of seafood!2015-10-05 12.26.59
  • My father and I spent my blood work day exploring Omaha. We took a cold tour through Laurentzin Gardens, and stopped at the chapel overlooking the interstate.
  • Blake and I drove to Nebraska City and walked the Tree Adventure. We (I) hope to evolve this day into an ongoing blog/website. Stay tuned!
  • I completed by Nebraska Master Naturalist core training. I had been looking forward to this since the beginning of the year.

 

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  • Took my parents and Blake to the annual Husker game. It ended up being the comeback game of the season! I also went to a couple basketball games with Aunt Margie.
  • I hit a second financial goal of the year: building my emergency fund to the minimum of the standard 3-months of savings.
  • My brother and his family hosted a great thanksgiving. I saw much of my family I see once a year if lucky. It was great to spend so much time with everyone!

 

DECEMBER

  • I watched the Husker Volleyball team play at home in the sweet 16, before they went on to win the national championship.
  • Preparing for Christmas was very relaxing this year. Everything from decorating to find gifts was much more enjoyable. I spent a lot of time during the holiday reading and putting my mind at ease.

Tis’ The Season

It snowed last night – a White Christmas. It feels like Christmas traditions are being fulfilled, including my insomnia. Not nearly as bad as years past, but here I am at 4:30 am. A head full of thoughts, and doing my best to off-load the weight.

There seems to be two options for surviving cancer: acknowledge it daily and be grateful, or ignore it for as long as you can. I feel like I’ve chosen the latter.

There are two options for surviving the holidays with cancer: allow yourself to be distracted entirely, or let it loom over your head. I still don’t know yet which I’ve chosen. This is only my second holiday season post-treatment. Tomorrow will be my second cancer-free-anniversary.

While what happened to me will always affect who I am, I won’t let it own me. I remember at the beginning, I read a story of someone who viewed cancer as “something bad that happened this one time” and then their life moved on. I clung to that philosophy through treatment – that some day I would look back at this as an event in my life sandwiched between so many others. I don’t know if I yet can look back, but I have moved on.

At the same time, it’s extremely difficult to swallow that life is average again after such a traumatic event. Applying the diagnosis of PTSD to survivors is common, and it makes you such a raw and genuine person. As I continue to settle back to normal life, it’s a little unnerving to feel that appreciation for life grow distant. Rather than focusing on how incredibly lucky we all are to be here, the tiny pain points in life are beginning to grab hold of me again.

I remember when I was going through treatment how excited I was when I was able to go to work. The first time I was outside in below 30-degree temperature for more than 15 minutes I was elated.

I tried to apply so much meaning and purpose to being diagnosed with cancer, to give myself strength to get through it. It seemed like the phrase “everything happens for a reason” was on repeat. As I grow distant from the experience and revert back to a ‘normal’ lifestyle of hamburgers, avoiding the gym, and less meditation, a part of my soul screams out “you didn’t learn a damn thing.” From my perspective now, I still can’t tell if it’s all bullshit.

I spent 20 minutes in bed this morning looking for a picture I swear I took of my chest when I was plugged into chemo. I wish I had taken more pictures of the bad stuff, of how distorted my body had become. Does anyone really want a photo of a colostomy bag? Of my ring of bruises from my self-injections of blood thinners? Of the giant needle I pulled out of my chest every two weeks?

I do.

So here’s my attempt to start documenting what’s left. To keep it all still relevant, the only things I have left of the remaining ugly: My scars, unfiltered.

Happy second anniversary to me.