Young Adult Survivorship / FDX

Thursday I had received the call I’ve had marked on my calendar for months. I have been formally added to the First Descents FDX to New Zealand in January 2018! Not many details have been released, other than the description on the site. I will post more information when I have it!

we’re setting our sights on the magnificent mountains and rivers of New Zealand! The name of our game this time around is primarily hiking and kayaking, both on the river and on the sea.


During my oncologist appointments last week, I found myself standing in front of a woman my age who was pregnant. She complimented my purse. Very conscious that we were two of three people in the room under 50 (Blake was on the other side of the room), I asked if she was there for herself or something different.

She was having a C-section tomorrow and needed to do final blood work to make sure things were in line. I eventually asked what her history with cancer was.

Five years ago, they removed a tumor from her ovaries that was larger than any of the kids she’s had. When they found it, everyone thought she was six months pregnant.

We moved from the waiting line, to the infusion waiting room, and gushed so openly and so bluntly about the details of our diagnosis, surgeries, the unpleasant complications, like we were old friends catching up.

I told her that her initial doctor’s recommendation of a hysterectomy, through her journey to being on the eve of her 4th child, gave me hope that I haven’t been robbed of my chance of having kids.

At 1:59, she had to leave the waiting room to run across the street for an OBGYN final check up. This round of appointments lifted my spirits much more than I had anticipated!

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July MRI Results

Hello! I quick post, as I’m battling an ongoing headache (I think the heat is drying me out).

I had my follow-up MRI today. In January, my CT results noted enlarge lymph nodes in my pelvis. My MRI results described no change in size in my node. While I was hoping they would have returned to a normal size, my oncologist assured me it is good news the size hasn’t changed, and that my body might just have larger nodes due to the treatment I’ve received. She felt good enough, in fact, that she will only have me do blood work in January, and is moving my annual CT scan to July.

So this is good news! I can move forward to next July without worry (pending January lab results), and will then be just 6 months shy of my 5-year cancer-free-iversary.

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.

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.

So, what’s next?

On Monday, I had my first CT Scan check-in. Results came back clear, nothing new has grown. My blood clot on my liver has dissolved, and some of the fluid around my initial surgery site had also cleared. I still give myself daily shots to avoid any other clots, but all in all, very good news.

I’ve had a couple people ask me what is coming up next. So, in short, here you go.
-Continue chemo treatments until December 24
-Mid-February I will head to Rochester to have my second surgery
-Late February to early March I will be recovering from that surgery
-Continued frequent observation for recurrence until December 2016
-Continued less-frequent observation until December 2018

Initially, I qualified for a clinical trial which would cut my treatments in half. There is reasonable evidence that just six treatments are as effective as 12. I could have participated in this study, and officially be done with my treatments as of the beginning of October. I elected not to. When I asked my doctor what the benefit of this would be, she responded by saying, “any clinical trial is good for the study of medicine.” This did not satisfy my concern of , ‘what if six isn’t enough?’ so I elected to go on the safer route. So here I am, just five more treatments remaining. If my body continues to weaken and I decide I can’t finish 12, there is some comfort knowing that I might have already endured enough.

After my final treatment, scheduled for December 24, I will continue to be followed up on with tests to make sure nothing has started growing. I left the chart that Mayo provided in Lincoln, but they suggested the most aggressive tracking possible. I think it was something along the lines of blood work every three months, CT scans every six months for three years. Then, blood work every three months and CT scans every year until I hit the magical five-year mark. If nothing has grown in the next five years, I’m considered cured.

Five years. I’ll be 32 on that December 24.

My 30th birthday party will be a blast. I’ll be nearing my 3 years being clear.

My doctor is a little leery of this outline. The three and five year marks are standard, but she’s nervous about the quantity of CT Scans and how that much radiation will affect my body in the long term. For most people with colon cancer, their age doesn’t lend itself to, “What will this mean for me in 40 years?” In my case, it’s a concern. That much radiation may lead to more complications as I get older. Her and I will work to find a outline that we both feel fits me. Too few scans could lead to growth getting out of control, My blood work has rarely been a good indicator of what’s actually going on inside.

After my final round of treatment in December, I will also begin to plan for my second surgery. I have to wait at least one month after my last chemo round for my body to recover. It may be longer, closer to February. I need to make sure my blood levels are back to where they can tolerate surgery and the blood I will loose, as well as my white blood count to fight off any infections. It will also be the dead of winter and the travel to Minnesota might be more troublesome than planned.

I’ve been putting a lot of thought into whether the drive to Rochester, MN is worth it, verse just having the second surgery in Omaha. It is a lot less invasive than the initial surgery, but my parents remind me that it is still more complicated than I assume. Right now, every thing in my is setup the way it will be forever. The second stage is just basically reconnecting my small intestines, putting it back in side, and closing me up. No more Bennie the bag. I think of it as being on the same level as a hernia surgery, which are common. However, there is the undoing of the stitching in my abdomen and reconnecting the intestines, in addition to the routine procedure. As my dad put it, “You should dance with the person who brought you to the dance.” Stay with the same surgeon all the way through, until you are finished.

I think the thing I’m most excited for after I get rid of Bennie, is getting back on a highly health-focused routine. I really liked the foods I was eating up to the surgery. It was mostly raw produce, something Bennie struggles with. I also miss running. It just feels awkward now and makes me uncomfortable. I do yoga/Pilates videos at home in conjunction with resistance bands, but sit out on any part that makes me lay on my stomach. It just feels wrong, and makes me feel like a sick person. I avoid the gym due to germs. I avoid any workout that makes me feel too sweaty, as all I can imagine is the bacteria building behind Bennie’s bandage.

I feel icky. I see the distribution of my weight leaving my muscles and settling in my waist. I fit into a size medium pant a couple weeks ago, which made me mad. I miss my leg muscles. I see my face getting puffier from the steroids I’m on.

I miss being normal. Being free to do such little things like eat nothing but fresh foods and go for a run. I feel helpless in that I have to take these pills when I see what they are doing to me.

I can’t wait until March. Five more months. Hoping for time to continue to fly through December, then it’ll just be a waiting game until February.

Insomnia

Here I go – my best and probably not last attempt to put together a cohesive and conclusive post on this vague topic. I’ve been saving ideas, reading articles, and even pulled out my last two weeks of notes from church on the topic. This is apparently the most important thing for me to do at 3am on a Tuesday. I joke that on my off-weeks from treatment, my body shifts to 100% ‘go mode’. It subconsciously is saying, “okay, I know you feel fine now and have so much to do. Go do it, NOW!”

I can’t shake this evolving line of thought. I think most people strive to answer this as well – what makes for a happy life?

I think our society continues to push us to want the best of everything. The most expensive clothes, flashiest cars, hottest spouses, exotic vacations, even best posts for social media. If you can’t say it better than someone else, is it even worth saying? It’s like have all become hyper competitive with everyone we associate with to the most minuscule details.

Last Forth of July, I came to the realization that Americans are offered the promise of freedom… To work as hard as we want. Which is a good thing, but also comes with a burden: if you don’t succeed, it’s your own fault. If you can’t fulfill these ‘best of’ expectations, obviously it’s because you just didn’t do a good enough job at being a person, right? It’s an exhausting concept.

There is this really inspirational TED talk from a woman who came to the US at age 13, and wanted to achieve the American dream of being “really, really happy”. Two decades later she found herself exhausted and miserable. Until, the day she surprised her daughter with blueberry pancakes.

She realized happiness doesn’t revolve around long-term success and big purchases. Happiness is an accumulation of little things you do everyday, but you have to acknowledge their importance to your happiness.

I’ve spent the last week or so thinking about what my blueberry pancake is. I’ve tried to focus on at least one good thing a day an acknowledge it’s importance to making it better. It doesn’t have to be the same thing, but something I can do to indulge myself and feel guilt-free about it, simply because I’m doing it to make me happy.

Honestly, I really love coffee. I love everything about the experience. I have four favorite coffee shops in town. I love stopping in before work. I love settling in for the day with something sweet and hot at my fingertips. I love that it’s so easy to buy an extra for someone else. I love feeling like I’m treating myself every time.

We’ve all read the articles that tell us we could save thousands of dollars a year by cutting out coffee shop trips. Well, I can think of a lot of different ways to blow through a grand that won’t bring me so much pleasure on a daily basis.

I’m beginning to have a deeper understanding of living for each day and appreciating each one for what it is. I think the people who spread ideas like “make each day better than the last” and “only do what you love” are full of crap. Some days are really good, but know that some days have to be really bad. Also, most days are just okay. Okay is good, it means nothing bad happened. Okay is simple. We all need to cut the expectations of having the best and be happy being simpler. An account I follow on twitter preaches “A matter of simply Being.”

One of my stress management DVDs from mayo exercised child-like examination. In their example, they took an office pen and just focused on the pen for ten minutes. “Don’t evaluate it, just examine the pen. Notice things about it.” This practice reminded me that as a child in my most desperate ‘OMG I’m so deathly bored’ trials I’d entertain myself by counting things. Particularly one day when my mom was getting her hair cut. I counted the number of nailhead trimmings on an armchair, something I would never have the patience or energy to focus on now.

I’ve found this to be a good practice too slow myself down and remind myself to live in the present. Being able to fully focus on one simple thing without evaluation, whether it’s something physical like a pen or an event like watching tv with my parents on a Friday night, leads to a lot less anxiety. I’m not focusing on having the best pen or best plans, I’m simply appreciating each for what it is.

I’ve decided that happiness is a vague term. An article I read claimed that happiness is too reliant on external forces. The internal feeling is referred to as bliss. Bliss is a state of mind that changes the interpretation of how you experience life. It’s a state of mind that assumes the best in any situation and gives the benefit of the doubt. It’s opening your eyes just a little wider everyday and loving everything you see. Bliss is having joy fulfilling your calling each day, no matter how big or small that calling is.

Bliss is what I’m striving for.

Season Finale of Weeds

I think I was so captivated by Weeds because it is a constant struggle between loss, and moving forward toward what’s best, regardless of the unconventionality of the outcome. Loss of a family member, home, lifestyle, comfortability, familiarity, morals. Never loss of friendship or love, loyalty or strength.

While the show itself becomes pretty outlandish, the underlying battles are very relevant in anyones life. I think it holds true for most people, one of the biggest fears is of sadness and loss. Often it even holds us back from fulfilling goals and making changes to get what we want.

This battle against fear and loss saturates my life right now. It takes strength to stand up and face it. While there’s been some people who have swiftly stepped out, there have been more who have taken a huge step up to be brave for me and be strong for me.

As my dad told me shortly after I returned home from surgery, “I just wish some people could be stronger for you.” I think the people who will drop out the next six months will boil down to just that: they aren’t strong enough to face their fear of some sort of loss with me over the next six months, or maybe they just don’t want to.

A loss of my lifestyle going out on the weekends. A loss of familiarity of my priorities, focus, battles, and leisure changes. A loss of my health and strength as a person. I think a lot of people my age live in a bubble that we are indestructible at this age, and don’t want evidence of anything else. That’s how I was.

I’m well aware of some of the people who have already taken a brave step against these fears. And that’s what I need right now, are people who’s bravery and strength I can tap into when I grow weary.

I know my mom has taken on the weight of so much of my family’s sadness and concern. In the beginning, i told people 60% of my energy is taking care of myself. The other 40% is taking care of other people I care about. I love that so many people care, it’s just consuming to talk with everyone, so please don’t interpret my lack of (timely) response for not caring or being appreciative. My mom has taken a huge chunk of that off my plate to reassure and console the people she can.

My friend Josh who called me three days after surgery and pitched a huge idea to me. While I hadn’t yet realized the gravity of my situation, he had pieced it together and already thought two steps ahead of me to help and support me. That call was probably one of the biggest events that forced me into accepting my situation. The work he’s still doing is incredible that a friend would be able to do so much.

My family who’s been at my beck and call and who’s sent support in so many ways emotionally and financially. I had one aunt who came in from out of state to spend a week with me, another wanting to come into Omaha from out of town to a chemo appointment to understand treatment so she can be my point of contact should something go wrong in Lincoln. My brothers family who is arranging their plans months away around my treatment schedule. Again, I feel like so many people are two steps ahead of me.

My friends, who have kept me so busy the last two weeks I think I’ve only eaten at home twice. The ones who catch me online during my sporadic schedule at night and want to check in to see how I am. They acknowledge the situation, support it and me, but keep me doing the same things I’ve been doing. My activities and capabilities might change, but I’m still me, and that won’t stop during these six months. Kudos to Jenn and Ann for hauling my suitcase across the country this weekend, and for making finding me a chair their #1 priority everywhere we went.

All these people realize the inevitable loss of some form in the immediate future, if not the loss that’s already here. All of them have embraced it, and volunteered to step up and lend me some of their strength.

It is hard for me to accept help. I like to think I’m a strong enough person and i can take care of myself, but thrive when I can be there for those close to me. I saw a quote the other day that really hit me – “Sometimes the helpers need to be helped. In turn, it makes them better helpers.”