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.

Advertisements

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.

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.

Ode to Bennie

Oh, Bennie.

We’ve had quite a few memories together.

Every Exit I take between Lincoln and Kansas city brings back memories of the emergency pit stops you caused. I remember the first time, I had to drive straight from the highway to the hospital, and jenny parked the car and waited in the lobby while I had their nurse specialist evaluate you.

I remember at the bars much later on the night of my benefit, a friend telling me – “I love you so much, I’ll give you a sensual massage around your ostomy bag.”

I remember the video another friend sent from a piano bar. They requested ‘Bennie and the Jets’ and the pianist dedicated it to you from states away.

You planned you timing perfectly to derail my workouts more often than not. Any time attention was being directed away from you, some how you always knew and made sure your presence was not forgotten.

Here’s to you, Bennie – you could always make me uncomfortable, you knew me so well.

You’re time is up, and you know it. You’ve caused me hell all last week. I had to step out of multiple meetings to clean up the mess you were causing.

May you rest in peace, Bennie.

This surgery tomorrow seems like a major chapter that is coming to a close. It’s really not over, but in my mind, it is. Instead of being a daily hassle, I will only really need to do anything every month or so.

I’m free. Normal life – you may resume. Back to normal pants, and gym clothes. I can clear my medical shelving from my guest room and put it back into storage. I can run, and stretch like a normal person. I won’t be paranoid and obsessive.

I can start hitting the gym hard in prep for my trip in May (if I can get my doctor to actually complete the form). I can take over the jobs Zach has done (mostly, anyway. Shoveling is still off limits for a while). I can go back to my fresh diet I really am craving.

Not that the next couple weeks or months won’t be tough.

We met the owner of one of my grandpas favorite restaurants over the weekend. He had colon cancer, and had the same surgery I’m having. “There will be tears,” he warns. “But it will be much better than where you are now.”

He thought about going to mayo, but decided to have the initial surgery closer to home and his family. “I was nicked and almost bled out. They read me my last rights.”

A friend of my grandpas had this same surgery when he was in his 30’s. He must have been one of the first people to ever have it. That was 50 years ago and he is still kicking.

It’s kind of been comforting to run into these people that have walked this same path before me. Signs that it will be fine, and life will go on as normal.

As we left my grandpas, I told him I can recover from this as well as he has been recovering from his recent surgery. “Of course you will, it’s in our blood.”

CT Round One

Today would be my 13th round of chemo, if I was still undergoing treatment.

Today is my first day of freedom.

Yesterday I had my first post-chemo followup. I had my blood checked, and received my third CT scan.

All results came back clear.

I have a small infection in one of my lungs, but is nothing I should be concerned about. In the grand scheme of cancer vs. wellness, the infection isn’t anything to be concerned about.

My last week and half have been my “Chemo Rebellion” week. I’ve had black coffee, alcohol, sushi, and gone to the gym. If I get sick, there’s no worries about missing a chemo appointment.

Well, I got sick. But I don’t mind. It’s been worth it!