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 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.

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.

YES!

I continue to surprise myself in 2015.

I was accepted to grad school. Even applying was an achievement, considering the steps it required: studying for tests, gathering portfolio pieces, and obtaining recommendations from professors and professionals. I already have done so much in 2015: I am now ordained and have wed some of my best friends, I left the country on a cruise, I’m in the middle of building a garden in my back yard, I’ve discovered my new favorite brewery in Kansas, I’ve been admitted to grad school. I have already planned two big trips across the country with friends.

And I accepted a new job a Swanson Russell.

After Tuesday, I will be leaving the comfort of the Wick alumni center walls and enter the world of advertising agencies. I have never been drawn to demanding lifestyle agencies portray, but surprisingly, I’ve never felt more comfortable about it.

Only two months ago I had a conversation with a friend about the reasons I wouldn’t switch jobs for another three years. Between my health uncertainties, my endless medical bills and deductibles, and being solely responsible for my mortgage, it’s scary to think about stepping out into the unknown.

The events leading up to my acceptance are nothing short of fate, and as I’ve learned, coincidences don’t happen. I believe there are greater forces as work, if you are open to seeing and hearing the signs. From the timing of the first contact with me, to the following weeks of anecdotes driving me to evaluate my professional status, I was continually guided back to this position. I consulted friends who had worked with my future coworkers. Conversations with unknowing colleagues answered questions they didn’t know I had. One in particular was initiated by me sharing an update about my garden. Their response was a story about a patio project he finished, only later realizing he needed to switch jobs for a fresh perspective. I asked if he thought he made the right decision. He answered, ‘with out a doubt.’

These things I thought I’d push off for years are coming so easy to me right now.

A couple of friends know how I’ve been obsessing about a recently purchased CD, spurred by a concert I went to. I will listen to it repeatedly for hours at work, and every trip I take in my car. I realized that the lyrics are echoing my recently found philosophy, with some of my favorite lyrics being: the thought of arriving, kind of feels like dying  |  If we get to see tomorrow, I hope it’s worth all the wait  |  Gathering new strength from sorrow, I’m glad to feel alive  |  construction getting louder, paving over yesterdays  |  I pause and take a breathe and bow and let the chapter end

Not only this, but the title of the CD has become my 2015 mantra: YES! <<check out some videos>>

The very beginning of this year, I was consoling a friend who has been feeling lost in life. My advice was to start saying ‘yes’ to opportunities, and trying things out. Even if he hates it, he is still one step closer to finding what he loves.

Some of the biggest hesitations I still have about switching jobs really boil down to the benefits I receive. Particularly, the retirement plan. After the initial offer, I called my friend to soundboard my thoughts, and realized that I can’t make my decisions on where I visualize myself in 40+ years dictate where I am right now. I reopened this conversation yesterday with her husband, with him echoing this thought: there is so much life you will experience between right now, and in 20 years when I am his age. So say yes, jump in, and start trying it out now.

One of the stories from cancer camp that has stuck with me, was from a friend whose son died of cancer. Two weeks prior, he purchased new climbing shoes. He lived life 100% until it was taken. Sometimes, you have to make choices for yourself, no matter how unorthodox or nonsensical they may be. You do them for you.

Maybe I will learn that I love the agency life. Maybe I will learn how much I hate the agency life, and realize how special my time at the alumni association really was. Either way, I will be making a step to a new perspective on myself, where I came from, and where I’m going. I will be one step closer to finding where I should be.

2012 was my year of tearing myself down and exploring who I am. 2013 was my year of learning to advocate and testing my strength. 2014 was my year of practicing contentment and being at peace with who I am.

2015 is a year of advancing who I can be, and saying ‘yes!’ to new experiences.

Scanxiety Round 1

Semi-exciting news: I’ve decided to get my masters degree from UNL. Although the this is great for obvious reasons, the significance of extends beyond just grad school.

I think back to around February of this year, I don’t remember where I was going, but I was riding in the backseat of my parents car. I was so irritated that they were pushing me to apply to UNL and get my degree. What I was refusing to vocalize, knowing I wouldn’t be able to spit out the one sentence without choking into tears, was that if I only had a couple years left to live, I didn’t want to spend them in a classroom, not being able to indulge in every fun thing that came my way. When I was on my deathbed, I didn’t want to think of the opportunities I missed, and the laughs I said no to, only to be locked up in a room with a textbook.

This summer, both my supervisor and the executive director at my work place left. They were such a strong support system for me. I felt lost in my place of work, and like I had lost a huge support system. As much as I wasn’t ready, this was the first big change I had to deal with since my recovery.

Although a part of me was bitter, another part knew this was just the right time for me to re-evaluate where I was going in the real world. I had to refocus on my mindset from last year: do the best you can with what you’ve got.

Career-wise, I figured I have a long way to go. I was beginning to hide behind cancer as a way to not push myself. Life was moving on, and I was trying to stay put.

I know how terrifying it feels to be stuck, helpless with little to no back-up plan. I will not be put in that situation again.

I’m also cleaning out places in my life that don’t make me feel good: people who bring out my bad parts, activities that make me frustrated and angry.

Which leads to another big change in 2015: no more volleyball. When I was in treatment, I missed it so much. All I wanted was to be back on the court. But now, I’m looking around and feel angry that I’m there. Angry when we play bad, angry I’m missing other events, angry it’s not what I remembered.

I’m now reserving my Thursday nights for professional/social activities. I want new friends, I want momentum. I want to be creating my future, not waiting for it to happen to me. I’m beginning to feel stagnant.

As good as it feels to be looking several years out again, a much closer threat looms: my annual CT scan.

I’ve convinced myself that my 3-month blood draws aren’t going to be accurate, because they’ve never been, so I’ve never gotten too worked-up about results. I could justify my CT scans the same way, but they will always be my big marker. I’ve brushed off worries until scan day, but now that day is very close.

January 6 to be exact. In an attempt to distract myself and look beyond, I’ve booked my port removal surgery for the day after on January 7. But, “scanxiety” still looms.

There have already been several nights when I’m just awake enough after my 4am bathroom run that my mind can wander. Usually, I can distract myself enough with a couple hours of netflix or reading and can fall back asleep. Occasionally, I get trapped in my head, anxiety taking over while I smother my sobs into a soaked pillow.

I calm down. I fall back asleep. I wake up and life goes on.

I’m revisiting the techniques I learned last year to calm my nervous and minimize my stress levels. I’m trying to get into a pattern of meditating, though I’m still looking for a decent place to clear my head inside my house. I drink night-time tea immediately if I wake up, while trying very hard not to look at a clock. I’m investing in ‘natural’ and less chemically-offensive cleaning products, and trying to stick to the organic produce. I bought a humidifier, which I can add ‘essential oils’ – anything to make me me feel like I can control what will happen in about a month.

My tactics seem to be working, I’ve been sleeping pretty soundly the last several weeks.

Maybe I shouldn’t have already signed up for the GRE. Maybe I’m just doing every thing I can to convince myself next year will be just as normal. Another motto from 2014: leave no stone unturned at the end of the day. If I find out I still just can’t do grad school, I know I tried. If my Thursday nights turn into a drag, I won’t be stuck in decisions every week.

No more waiting, let’s start doing.

Rock Climbing Collisions

I keep getting asked, “when are you writing your Moab blog?” I know, I’ve been dragging my feet.

There is just no good way to put that week into words. Think of your favorite day, and try assigning words to the things you felt, knowing the reader will never be able to fully feel what you experienced. I would almost feel a distancing of myself from the experience when rereading the words I tied together, focusing on my awkward writing, and failure to select words to properly illustrate the beauty of that week.

None the less, at a minimum, I suppose I owe a summary.

As I eluded – “cancer camp” (we can call it that, you can’t) was amazing! I’ve said several times (including to people while out there) that there probably isn’t a thing I could have changed to make the week better.

I hopped on a train from Amtrak to Grand Junction, spending the majority of the ride next to an older man, a traveling musician. When people asked where he was from, his response was always, “everywhere and nowhere.” We didn’t spend a lot of time in deep conversation, but we became companions, as occasional sightseeing spots were shared and we watched over each others possessions when we occasionally left our seats. We casually sent each other off with well wishes, him not sure what my week had in store. Me not minding I didn’t know his either.

I stayed the night in a hotel in Grand Junction and wandered the town the next morning. I stumbled across a church and attended service, whose theme for the week was, “We no longer have to live at the mercy of past disoriented ideas and narratives,” followed by a verse, ” Do not neglect to show hospitality to strangers, for by doing that some have entertained angels without knowing it” (Hebrews 13:2).

I confessed I had never met anyone that I was meeting to my shuttle driver between the hotel and the airport. I shared with him the purpose of this trip, and he revealed that he too was a cancer survivor, and many other illnesses under his belt. His parting words to me as he unloaded my suitcase from the van, “keep on the fight, and God bless.”

Honestly, I don’t remember much of the first night. “Glazed over faces” was one reference to the campers that night. By the end of night one, all 20 of us were united under one roof – nine ‘campers’, three climbing guides, two program representatives, two chefs, a camp mom and dad, a journalist, and a photographer. We all were given nicknames – and I’m still adjusting to seeing these foreign normal names show up on my feed – except ‘Coconuts’, who finally jumped on the social media bandwagon solely for the reason of staying in touch with us all.

We spent the next four days climbing, consoling, confiding, and celebrating. “Casual” conversation topics kicked off when Coconuts realized that poop schedules would be the least personal of the things we would share with each other during the week. Micro families formed around roommates, vanmates, and regions we originated from (I was the loner in this category, the only one not from a coast). We each told our stories as we felt comfortable, showing our scars, giggling over life after cancer, and learning about the journeys we had all taken and what still lies ahead. We were from all stages in life – I was the second youngest, with other singles, spouses and moms. I think I will always remember the conversation on the back patio the last day – it seems like everything was left on the table. So honest. So brave.

Climbing was much more fun than I predicted. I’m very jealous of everyone who was able to return to places… not flat. This is the description of the third google search result for ‘rock climbing Nebraska’:

“Welcome to Nebraska’s page at RC.com. Nebraska has been blessed with flatness. Unfortunately there is not much natural rock to conquer, but we do have some indoor gyms. If you are on your way through the state or watching our exciting football team, then check out some of those indoor gyms to keep you in shape. Keep climbing high!”

The second day of climbing, I had my a-ha moment, the one where I could feel myself falling for the adrenaline of pushing myself further than I thought. I could trust my feet to support my body only by gripping onto ledges only about 1/3 inch wide, and didn’t mind the tips of my fingers burning from clinging to any minor crevice. On day three of climbing, I wanted it all; I climbed until we had to leave. The last day we did a multi-pitch climb, finishing at approx. 350ft from the base, and finishing with a 180ft free rappel. I was later told by one of the guides, “you were really scared. We hadn’t seen anything like that from you all week!”

So many lessons were learned for each person, whether it was to trust other people to catch you when you fall, or in my case, to trust myself to be in control. We all agreed that the mixture of conversation and climbing was a complimentary combination of vulnerability and power. The journalist, Peanut, shared that she had emailed home a few days in and asked her mom, “what have I been doing with my life the last 27 years?”

So what does it all mean? What am I taking away from this?

I rode back with one of the campers to Denver to meet Blake. Though all the tears from saying good bye to everyone at the cabin and then the airport was over, I couldn’t help but think about all the other people I’ve said ‘good bye’ to recently. The good news is that most of them have been choices, either on my end or theirs.

In the last four months, I’ve said good bye to three of my closest constants at work, all of which had been there the entire duration of my job. My supervisors last day at work was my last day at camp, which I am happy worked the way we did. Neither of us are criers or ones to get too emotional, but it was really tough the last two weeks.

I said good bye to my grandma. She had been suffering from Alzheimer’s for almost 10 years. It was time, but I was still caught off guard by how hard it was.

Friends moving out of town, getting married, having kids. All different ways I’m saying good bye, not necessarily to them, but to the way of life I had with them.

I’ve recently been thinking of life as a timeline of intense bright flashes from other people colliding with us (Jupiter’s love for astronomy must be rubbing off on me), which is measured by the strength of impact, not necessarily of longevity. Eventually the flashes dim out and are replaced by another series of impacts and flashes. It doesn’t matter when or why people leave our lives, it doesn’t affect how long their glow stays with us. I will never forget these parting words from my executive director – appreciate every day you get to spend with people around you. You never know when that will change.

A blog recently surfaced and gained a lot of attention in the cancer community, regarding “dying with dignity.” While everyone else is scanning for celebrity gossip and sports updates, these are the things that fill my newsfeeds. The article details a young female who will use medical resources to end her life Nov. 1. She is using these months as an awareness drive to bring to light her struggles to gain ownership of her remaining time on Earth. She explains, “I’ve discussed with many experts how I would die from it, and it’s a terrible, terrible way to die. Being able to choose to go with dignity is less terrifying.”

I couldn’t help but think back to a conversation we had the last night at camp. One of the girls, who was diagnosed with the exact same cancer and staging I was, had recurred in her lungs. For those of you new to my situation, that’s basically the end of the line. As she painfully shared, “I wanted to have a career by now, I can’t die while I’m at this job…” She finally put so bluntly her and my worst fears, “I don’t want to drown in my own fluids, and the doctors said that’s what’s going to happen.”

Of everyone in the group, she’s been one of the few to not stay connected. Has her bright flash already dimmed? Did she say her final, “good bye” to us, moving on to her next collision? That was almost three weeks ago, and I’ve already met so many new people… the cycle continues. Never forgotten, but already dimmed.

When I got home from Utah, I unpacked a bookmark I forgot I found on a train. I jotted a quick note, explaining I had found it in my seat in Lincoln, and addressed it to the person whose address was on a sticker on the back of the cloth. Last Thursday, I opened a letter than man wrote me back. He explained that he lost this bookmark, after his book disappeared from his seat when he left to grab a snack. The bookmark belonged to his late father. He, his brother, and his son were traveling across the country together. He concluded, “Never expected such kindness from a total stranger, of course, reaffirming our faith in America and our many unknown neighbors.”

It’s the strength of the collision that determines the brightness of the flash.