In my head

My therapist says people diagnosed with a terminal disease tend to experience an existential awakening/crisis. Mine has been in full swing for some time now but a short while ago took an extended dark turn. Everyone dies, most people just don’t know how and therefore don’t think of it all day everyday like me.

I recently spent 5 days in the hospital due to a bacterial infection. That whole fever thing I got when we attempted to hike in Shenandoah well it was a bacterial infection of my blood, not a cold or the flu. I have a catheter in my abdomen to help drain fluid I accumulate and the point where that catheter enters my abdomen is an open wound, sounds gross but it’s actually very neat and clean. Well one of my happy outside bacteria got inside through this opening and wreaked havoc. Apparently this sort of thing happens and is normal its just that is usually happens shortly after getting the catheter and is accompanied by crazy intense abdominal pain. I have had my catheter in for 16 months and experienced absolutely no abdominal pain when this infection took hold. So off to the ER I went. I was admitted and spent 5 days on the oncology floor.

5 days with nothing but time to spend in my head. Lots of time. I had my own room full of buttons, tubes, gloves, monitors and all sorts of other hospital stuff. My bed was super sterile, bleached white sheets, vinyl-esque mattress, disposable pillows, all easily cleanable you know in case someone dies in it. This stay was so difficult for me mentally but medically it was pretty straightforward. Bacterial infection of the blood, from a common treatable bacteria, treated with antibiotics, my temp and white blood cells monitored constantly along with multiple blood cultures taken to observe the bacterial progress or lack thereof. Lots of observation, lots of bloodwork and lots of sitting and waiting. I was totally mobile after the first 24ish hours, my meds were administered 3 times a day through my IV so I was not tethered to a pole and could walk around and leave the floor, not that there were many places to go.

Walking around the oncology floor I noticed that my door was the only one without multiple notes and instructions on it and that I was one of 3 people who actually left their room and walked around. Many doors stayed closed always and some when opened had all the lights off, shades drawn and somber family and friends within. Notes on doors mentioned issues with food, weight, bloodwork and some required visitors to wear face masks, gloves and sterile gowns upon entering. These people were dying. I am too and this will someday be me.

And so the downward spiral began. What was the point of anything that I did? I can’t have kids so no genetic legacy for me. All the trips we take, pictures I snap, words I write who will remember any of it when I am gone? And for how long? Why do it? It was not a what is the meaning of life issue but a whats the point to the things I do. To burden the ones I love with memories? I know my family will remember me but life will go on, it just does. My husband will remember me too but in that case life will also go on, he is too young to never move on. I will die, my memory WILL fade. Life will continue to move forward and I just won’t be part of it anymore. I am not going to pass in my sleep. I will most likely be in a morphine coma unable to communicate, on one of those fucking sterile beds, destroying the hearts of the people I love because my body just can’t fight anymore. Welcome to my head.

And so it went for the duration of my stay. I did have moments of get me the hell out of here I have so much stuff to do and see but this time it has been harder to crawl out of the dark. When my medical team finally decided to let me go home it was not without a parting gift. On my last day I was given shiny new tubing in my arm to compliment my abdominal tubing. Joy. This tubing, an IV, allowed me to go home and administer my own meds (awesome) but seriously more tubing is not what I wanted. So now I have what is called a midline, an IV that runs from above my elbow to my armpit in my right arm. Fucking great. I cried when they put it in not because it hurt but because I simply did not want it. I do not want more plastic shit sticking out of me that I have to learn how to use. I don’t want cancer, I don’t want IV’s that last 4-6 weeks, I don’t want fluid in my abdomen, I don’t want meds whose side effects are more cancer. I don’t want this version of my life.

It’s as if two people live in my head and recently the one that just wants to stop functioning is taking over, vocally at least. I learned to use the IV and have to use it 3 times a day for at least 2-4 weeks, I don’t like it one bit. I have sat around a bunch too in my comfy clothes trying to avoid life, contemplating my demise and wondering why I do anything that I do. But there is a tiny voice in my head that knows what matters. It yells ever so quietly to put on pants and get out, see the world, spend as much time with those you love even if ultimately it will end in pain. Make those fucking memories even if you don’t see the point right now.

img_5492-1

Keeping me company in the ER.

 

img_5494

Moms most awesome and delicious chocolate chip cheesecake.

 

Advertisements

Shenandoah Fail

As you can probably surmise from the title I am going to tell you a tale of a failed hike. Its been quite some time since I have picked up my beloved backpack and filled her full of supplies, food, sleeping bag, and some articles of clothing so I was super excited to do that for our hike over Labor Day weekend. Yay! Hike! Woods! Bears! No people or cell service! Super excited here.

Shenandoah National park is about 6 hours from our home so we decided to drive down partway on Thursday night with the plan being to have a short drive Friday morning into the park. We had chosen to do a 30 mile loop in the southern part of Shenandoah having a short hiking day Friday of 4.5 miles to our first campsite. Awesome! Well I woke up feeling kind of yucky Friday, not quite sick but almost maybe. We drove to the park figuring once I got going I would most definitely feel better. I did not feel better and in some fit of oncoming illness/stubbornness I decided let’s do a hike anyway but super short/easy so we at least get to sleep in the backcountry. Brilliant. We talked to a ranger and picked out a 2 mile trek, relatively flat to what he called an “outcropping with a view”, me and this park ranger need to have a serious talk about what one considers a “view” but more on that later.

Since we only had 2 miles to walk we spent a good part of the day driving around the park seeing some of its many overlooks with me fluctuating between “I feel awesome” and “I need an aspirin.”

img_5460

How could I say no to that face?! Sure we should hike 2 miles.

Eventually we decided to hit the trail since well that was the whole point of our trip. By this time I probably should have chosen a nap and some medication but poor decisions are my thing.

 

Initially I actually felt really good, the woods were nice and quite and I was really looking forward to spending the night outside, despite warnings of super high bear activity, in my hammock which I love sleeping in. We started out on a portion of the AT and quickly passed by the hiker hut and outhouse which I have to say is like 5star backpacking because out on the PCT there are no toilets and no huts, totally jealous. Shortly after passing the AT campsite and no more than .5-.6 miles from the road we saw bears!!! A beautiful momma and her cub, I have no pictures because honestly I just wanted to watch so you will have to trust me. They rambled through the woods with little nugget trying to keep up and I was really enjoying this until momma started to turn to head towards us. My husband hates me for this but I just had to make some noise, I like my bears at a distance. They heard and chose to go the other way. Not too long afterwards we found our camp hung our hammocks and decided to walk to this “outcropping with a view” the ranger had mentioned and eat dinner there. Well Mr. Ranger I don’t know what you call a view but when you walk 2 miles in a heavily wooded area to only walk another .2miles to a rock surrounded by more heavily wooded area and if you lay your head on your right shoulder you can see another rock across the way this is not a view sir. I was starting to feel much sicker at this point so maybe that added to my disillusionment with this “view”.

So obviously at some point in this story I get really sick, well here it comes. That night in the hammock I slept like shit! One second I was sweating and so hot I wanted to scream and boom next minute I am shivering so hard my teeth are rattling and I put on all of my clothes all this with a brain splitting headache and leg cramps that were so painful I almost hoped a bear would come over and just have me for a snack. No bear came to my aid and in the brief moments of peace I got I did try to appreciate the gorgeous night sky and the sounds of owls. When morning came I had gotten about 20 minutes of sleep and was really worried that I would not be able to walk out. We still had to walk out! With all our stuff! Shivering like crazy and with every scrap of clothes I had on I was like “I got this, its only 2 miles and the pack is super light”, needless to say I did not have this. Who knows how many steps out of camp we were, I was borderline delirious, I thought I was going to collapse so I had to hand my backpack over to my husband and he had to carry not only his on his back but mine over his chest. That man is my hero, really truly. It was beyond hard for me to hand that damn pack to him because it was my responsibility to carry it, I made him promise that if any people walked by he would immediately drop my pack and stand there like “oh, that pack, I have no idea why its next to me, my badass wife will be right back”. I may have told him to say that too, I was getting more and more fuzzy/delirious so I have no idea. (One couple did walk by and bless his heart the man dropped my pack!)

After what seemed like an eternity we made it back to the car, I may have said something like “give me a bit, I should feel better and maybe we can hike some more later today”. Crazy talk. I got in the car and woke up 6pm-ish somewhere 2 hours west of Shenandoah in front of an RV. I may have eaten some french fries and requested an apple somewhere in there, some super awesome handsome man got me medicine too, I hope it was my husband because I took it.

img_5479

The RV we spent the night in, hubs found it on Airbnb and he is holding me up in this pic.

Sunday we started to make a slow trek home realizing that I was done hiking for this weekend. My head felt like it was going to explode, I was dizzy and super scary for me I had blood in my nose and mouth. When you get diagnosed with metastatic cancer you know the end will be ugly you just have no idea WHEN that end will come. My brain spends more time than it should fearing every ache and pain is the end but when I saw blood combined with feeling horrible I wept and shook. Was this it? Would I go straight to the ER when we got home? Was this just a cold/fever or was I kidding myself thinking that? Panic. Fear. More fear. I am not done, I haven’t seen everything on my list yet! I want to live in an RV! I am not ready! Cancer doesn’t care, it does what it wants when it wants and most times I am being dragged along kicking and screaming. The right thing to have done when we got home was to have taken me to the hospital and gotten me checked out but you probably already know that that is not what we did, like I said me and decisions. Well its Thursday and its the first day I feel better, my doctors do always say give it about a week if it doesn’t go away get your butt in the hospital, turns out it was just a cold/fever. I say that with some certainty because my results came in from my recent CT scans and bone scans and all is stable, no cancer advancement. Life will go on at least for another 4 months when my next scans are scheduled.

I did want to get my backpack on at least once this year and even though it was brief I will count that trek into camp. We did see bear and one amazing “view” so not all was lost on this hike and on the way home I did manage to have myself a lushie. 🙂

img_5475

Lushie – a wine slushie.

 

Untitled

Its been close to a year since my last post and I have wanted to write many, many times but somehow convinced myself not to. I am no longer hiking I would say, no longer driving across country, what the heck would I write about especially since I started this blog with the intent of documenting my adventures last summer and those are over. Well I haven’t stopped having adventures and I have been wanting to write so this other voice in my head said why not.

Its also been over a year since I set foot on the PCT and that dang dirt path has changed my life forever. I wake up most every day thinking about the woods and yes I still have the photos on my phone and yes I still look at them often. I woke today with this extra odd pull towards those pictures especially the portion I walked with my cousin, lo and behold today is the 1 year anniversary of us setting foot on the trail to complete my final 50 miles. In 4 days I would be done walking close to 200 miles, not my goal of 460, but all things considered not too shabby.

img_3700

1 year ago today!

I keep saying that this trek changed my life and its hard to explain how it did but it did. Being diagnosed with Stage IV breast cancer definitely rearranged things for me, its what prompted me to do this hike. Put the two together and my priorities, my values, what I know that I love and I want are clear. We learned to live without stuff but most importantly I learned that home is not a physical place for me its where I am most happy and with the people I love the most. And despite saying I hate dirt and long distance hiking having sat on things for a year I may have changed my mind, at least about the hiking, definitely not the dirt. 🙂

The last year has been full of adventures big and small. I turned 40! We went to Norway (in winter!), the Finger Lakes in NY, Montreal, Acadia national park in Maine for my 40th birthday and Texas with my sisters. Interspersed among all these trips were countless visits to the cancer center, some routine but quite a few unplanned. I am still on the medication I began right before the hike, along with various supplements and shots that I take/am given. I also still have that drain in my abdomen which decided to start malfunctioning right around the time we went to Norway. I typically drain 1-2 liters of fluid from my person weekly and the drain got clogged while we were away so I was unable to use it properly on our trip and upon returning home. After multiple visits where I was told all was good they finally listened to me and replaced my drain. I hate talking about this stuff, not because its no fun but more so because I hate to upset people and I don’t want anyone to feel sorry for me. The drain helps so much, I don’t like having it in the slightest but this is my normal now. So after having it replaced which requires minor surgery and sedation, I was sent home and thought all was good. A mere 30ish days later the damn thing broke again! Back I went for multiple check ups and readjustments which I shit you not involve snaking my abdominal cavity with wires. I may have gotten a bit queasy during those. Right before my birthday trip to Acadia I went in and had the drain finally “fixed”, I put that in quotes because they did NOT fix it! I sadly didn’t get to do any of the hikes I had planned due to being burdened with almost 3 liters of fluid in my abdomen but once I returned I got a little aggressive with the doctors and made sure I was heard and things were done right. I am happy to say my drain is back in working order. 🙂 🙂

My life is not always happy photos and epic adventures though. The troubles with my drain had me extremely worried and a bit panicked, did my meds stop working? What would happen next? Was the cancer spreading? Would the procedures hurt? Most sadly though was the news I received while I was in Texas. A friend, a young woman also with metastatic breast cancer whom I met days after I was diagnosed and became fast friends with passed away. I am truly unable to believe she is gone.

One year ago today I started the final miles of an adventure that would change me forever. That hike along with my cancer diagnosis has made me love harder and want more. I know my time here is finite and sadly I do know how I will pass but until that time comes I plan to see as much as my body will allow me to. This winter I hope, fingers crossed, to see the northern lights and before summer is out I absolutely must get that backpack on and explore some back country and maybe, just maybe (hopefully on the sooner side!!) make my way back to Oregon, back to the PCT. I still have 260 unfinished miles. 🙂

img_5154

The Maine coastline, always beautiful.

My absolute new favorite way to sleep. #hammockcamping

Shortly after 4am atop Cadillac Mountain in Maine waiting for the sun to rise.

Sunrise.

Little did we know the next day we would learn the TX two step

Homemade peach cobbler with homemade peach ice cream from a roadside farm stand in TX

Deep fried beets at East Side Kings

Bahn mi at East Side Kings in Austin, TX

Horchata!!!

BBQ!

Bananarchy, the most amazing food truck in Austin. “There is always money in the banana stand”

Shinrin-yoku

I wrote this one awhile back and just haven’t been able to post, something about not wanting to have this particular adventure come to an official end but its been just over 2 months since our return and closing this will only open another door to another adventure. 🙂

“In every walk with nature one receives far more than he seeks.”- John Muir

During a phone call with my mom while we were out west my father was super eager to speak to me, he had been doing some online research and had something important to tell me. Now my father is not a tech savvy man and I don’t think I have ever seen him use the internet, not once. He carries an old school flip phone which he keeps turned off all the time, logic being he got along just fine before cell phones but will carry one because we make him. Love that man. So I was pretty intrigued when he said he found online information that he wanted to share with me. Turns out my dad had read up on Shinrin-yoku, a japanese terms that means “forest bathing” or less literally -healing through nature. It melted my heart that he did this research and wanted me to know my walk in the woods was bound to do me some good.

Well he was right. Once we got home I contacted my medical team (its so weird to say that), who was super eager to see me not just to hear about the trip but to stab me a bunch with needles, fill me with dyes and take pictures of my insides, they are a weird bunch. After reprimanding me for not seeing an oncologist for 12 weeks they gave me the results of all my tests and the news was amazing! My tumor markers are the lowest they have been in almost 2 years, the numbers were down 50% from what they were prior to our trip. The absolute best news of all – the activity in my bones has ceased!!! Ceased! I get goosebumps writing that and still don’t believe I am able to write that in regards to my health. I know full well that with this disease one minute you are on top of the world and the next you are in the ER but I will take this even if its only for a little while.

One can definitely argue that maybe my new medication finally kicked in, I started it about 6 weeks before we left and it was just barely making a difference, or one can say that maybe, just maybe those woods gave me a gift. To be out there with no iphone, kindle, laptop, facebook, or instagram no emails from work, no junk mail of any sort, no tv and no access to anything is kind of amazing. Our phones were no more than gps devices and cameras, everything I needed to survive was on my back. There was no noise from cars or people, the wind is incredibly loud and scary as are hummingbirds(these guys are loud!) when they are the only sounds you hear, oh and the occasional coyote. Our only worries were water and a campsite for the night and not getting lost which we may have done once. This calm and quit, this super simplified day to day, this lack of stress is what I believe helped me get just a little bit better and to fall madly in love with the woods of the pacific northwest.

I don’t believe this will be my last post or our last adventure as we discovered way to many awesome sights that I have added to my to do list. Angels landing and the Narrows in Zion must be hiked and I discovered that one can see the northern lights in Oregon!!! Plus I still have around 200 miles of the PCT to finish and would love to hike portions of the trail in Washington state. I think I may have caught the hiking bug. 🙂 So I leave you with some more photos from the hike since I still can’t believe I was there and did this crazy thing, along with some from our drive home.

Hiking the final 50 miles.

The final 50 miles. Insane views of Mt. Rainer and Mt. St. Helens in the distance.

I miss these views of Mt. Hood.

Good morning Mt. Hood, how I miss these views.

IMG_4623

I think there is magic in these woods...

I think there is magic in these woods…

I swear I am using the phone as a gps! :)

I swear I am using the phone as a gps! 🙂

Mosquitoes are the worst.

Mosquitoes are the worst.

Camping with my husband vs.....

Camping with my husband vs…..

IMG_1169

camping with my cousin. Note the clothes line in the background. 🙂

We couldn't help ourselves! :) :)

We couldn’t help ourselves! 🙂 🙂

Nevada. A whole lot of land and road.

Nevada. A whole lot of land and road.

Zion, with me for scale. We don't have a single photo that properly captures the epic scale and beauty of this place.

Zion, with me for scale. We don’t have a single photo that properly captures the epic scale and beauty of this place.

Bryce canyon.

Bryce canyon.

The Grand Tetons.

The Grand Tetons.

Driving through Yellowstone at 5:45am.

Driving through Yellowstone at 5:45am.

The sun rising over Old Faithful.

The sun rising over Old Faithful.

A field full of bison.

A field full of bison.

The Badlands.

The Badlands.

IMG_5032

The Badlands.

Pictures fixed

A few of you pointed out to me that the pics I was posting were all stretched out and funky, thank you for letting me know! I have hopefully fixed them all so they look normal. All my posting was done with my phone and they looked fine on here so my sincerest apologies for the wonky pictures. 🙂

We are still processing our return to real life and going through all our photos, there will be more posts to come. 🙂 Thank you to everyone who has been following and supporting!

 

Always classy, boxed wine and olives in Yellowstone.


 

The Badlands


    

    

Home

This post has been rattling around in my head for days and I just couldn’t bring myself to write. It’s the end of an incredible adventure and the return to reality, neither of which I want. This place, these woods, the people, I am enamoured with it all and am questioning where home is. 

The last 50 miles of the hike went by way to fast, it’s only been a few days but it seems like a distant memory. We forded 2 rivers in one day, ate lunch while cooling our feet in the gentle flow of another, saw countless waterfalls and even got to walk behind one!! I accidentally set off our S.O.S button (I may have done this twice, it is under debate),saved my granola and wet wipes from what I hope was a large squirrel outside our tent one night, almost lost my campshoe down a waterfall and just barely avoided a meltdown after a long day of going uphill. 

I don’t think I am ready yet to process the hike mostly because I just can’t believe it’s over. Not only did I see beauty, I felt it. It infiltrated my being. I want to yell out to everyone get out, take that trip, see that sight, DO NOT WAIT. Bills, jobs, responsibilities, they will always be there in some way or another. Your health, your one beautiful life may not. 

In the meantime we head east on our way home.  

 

Sunset at Timberline Lodge


 

Two Polacks about to hit the trail, maybe not a good idea…


   

  

My cousin somewhere behind that backpack

Our Polish flag tent 🙂


 

Mt. Hood

  

River fording!

Mt. Hood

  

    

50 more miles

We are back in civilization for just about 3 days to relax and prep for the last leg of this hike. My husband will be passing the torch to my cousin who will join me for the stretch from Timberline Lodge to Cascade Locks. 

Super excited for this last stretch but it will be so bittersweet. I have learned that I am not a huge fan of long distance hiking, I have a pretty low dirtiness threshold, but I love wild wilderness. These woods out here are like nothing I have ever experienced. Their beauty unmatched. Turning a corner to view the Sisters fighting the tears and knee shakes when I realized I made it. Climbing thousands of feet to see as far as Mt. Shasta in CA, cooling off in an unexpected stream and the zen like silence of just you walking through the woods. These are a few of the things that will stay with me. As will the multiple meltdowns, one during which I may have laid down on the trail…., the unrelenting mosquitoes or as we call it the 7 levels of hell and the dirt! OMG the dirt!!

Until Monday we will relax, imbibe and enjoy. The perfect prep for my last 50 miles. 🙂

 

Skippers

  

A glacial stream

  

Lovely flowers


 

These were so soft

  

  

  
   
    
   
 

Trying to stay clean, it is a losing battle