My 3-Year Scan Results

Wanted to send out a quick post on my CT Scan yesterday. While it wasn’t the good “everything looks great here” conversation that usually happens, I’m trying to keep a rational head.

Several lymph nodes in my pelvic region had increased in size since the last scan. It wasn’t enough to order immediate follow up, but it was concerning enough that they will have me so an MRI in July rather than the standard blood work results.

Sometimes lymph nodes get inflamed when they are fighting an infection or other bad stuff in the budy, so I’m convincing myself that my system is just doing what it’s meant to do to knock out something existing in my body.

From a cancer perspective, often time lymph nodes are the first indicator cancer has spread, as the cancer cells get into the nodes and start growing. So, growing lymph nodes could mean growing cancer.

I’ll simmer on this for a while, if I do start feeling very sick or tired like I’ve experienced in the past, I can ask for a MRI sooner to make sure things aren’t getting out of control.

So, not the best news I was looking for, but nothing life-altering here.

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How You Can Help The Standing Rock Sioux Fight The Dakota Access Pipeline: view the Huffington Posts list. 

I was awake from 2-4 am last night – the second time since Nov. 8 – feeling scared and disheartened for the future climate of the country. The North Dakota Access Pipeline has been weighing heavily on my mind; there’s so much that I should be doing to help but don’t know how.

Does anyone else remember the series of social posts that have moved through our feeds which defended Native Americans earlier this year? Andrew Jackson removed from the $20 due to his actions toward Native Americans, and the sudden out lash at Christopher Columbus Day due to his role in claiming America for white settlers.

These inhumane, unforgivable, and unjust actions are no longer history – they are happening right now. The Access Pipeline a continuation of centuries of European settlers going against their word to Native Americans. Selfishly taking what they want and forgetting their promises. Here’s a USA Today article of the history of this land, the several milestones that have occurred and diminished land promised to this tribe.

I would like to believe that in 2016, our country can respect the promises we’ve made. That we will choose people over profit. Respectability over power.

I look at our upcoming leader, who from what I can tell, is the exact opposite of these qualities. I fear that the outcome of this situation is only a glimpse of the major step backward from the humanitarian progress our country has made. Between the Nazi-like actions and words tied to our president-elect, and this taking and destroying land promised to Native American tribes, I ask again as I had so many times this month, how did we get here?

As we look toward the holiday weekend, please consider the irony of us gathering around to celebrate the settlement of America, as we are continuing to take more and more from the reservations that barely have anything left. As we curl up with our computers or haul armfuls of “good deals”, think about the people sleeping in tents, being soaked in freezing water, fighting for the little they have left as our greed continues to take more. “Our country is so in debt, this will bring jobs”… at what human and moral expense? We look toward thievery to fulfill our “money problems”, on the same day known as the biggest shopping day of the year. Shame on us all.

Consider taking 10-20 minutes out of your day to take action. Click over to their Amazon wish list, which asks for things like gas-masks and mats to sleep on. Make a call to a representative, or simply make a donation.

Read what you can do here – we can all do something.

First Descents Founder Nominated as CNN Hero

CNN is hosting a voting competition for ten selected ‘2016 heroes’. The winner’s charity will receive $100,000.

Brad Ludden, the founder of First Descents, which I am currently fundraising for, is one of those top ten. Here’s an exert of his profile, read the whole story here.

In kayaking, a “first descent” is when someone successfully paddles a section of river that no one has ever paddled before.

By the time Brad Ludden was 18 years old, he had attained close to 100 of them.

“Every time you come around a corner, you’re the first person to see it from that perspective,” said Ludden, now 35. “You feel a lot of personal transformation and growth through that process.”Today, Ludden is giving that life-changing experience to young adults with cancer—helping them face down their fears and realize they’re not alone.

“When you’re a young person with cancer, it’s so isolating,” said Ludden, who watched his own aunt battle cancer when she was 38. “All your friends are getting married, having children, starting jobs and living life. Here you are fighting for yours.”

Read the whole story and vote for Brad here.

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?

2014-moab-fd-3142
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.