Living Stops for Nothing

And again, it’s over. But again, it’s just begun.

To summarize the whole situation, I still have cancer. I expected this, so that isn’t an emotional blow, yet in the process of attempting to remove the cancer this time around we had a very successful surgery, “90% successful”, I was told. I don’t know if I was supposed to take that literally, as if we got 90% of the cancer out, or more abruptly, as to just say it went as well as it could have gone without getting everything.

Before

Before

And now we “wait and see”.

I had the heated introperitoeal chemotherapy during the surgery and then five days of infusions through the ports and tubes running around my abdomen over the following days, but now, no more. At least, that was the plan. Now we run through standard checkups and CT scans to keep a close eye on the cancer, to see if it begins to grow out of control again, at which point we would begin the chemo regime again, or if everything remains the same as it did this past year and few months, with almost complete stability. No growth. No regression. 

That’s the short of it and despite being in the throes of post-surgery suffering, I’m feeling pretty good about this whole situation. I feel reinvigorated, renewed, rededicated, aided in part by the relatively free running I squeezed in the last weeks leading up to surgery. Pushing through every day was worth it and I’m ready to keep moving further and further away from chemo and closer and closer to my other physical limitations. I’m also ready to do this with a commitment to “doing it right”, not rushing into it, not neglecting other components of total health and whatever it takes to make another go at it….whatever that IS right now. I’m holding off on stated goals until I’m completely away from surgery, adjusted to a new living schedule and making sure all the pieces fit. 

During.

During.

In the interim, and more important, immediate sense, i’m still at the hospital, recovering at a pace that has truly surprised me…shocked even. I may not have been ravaged by cancer as much going into surgery this time around, but I was consumed by chemo and felt that I was held back from being at my best potential going forward, so I worried about the recovery. I felt weaker. I also worried about the extra chemo treatments and how they would add to the suffering. But I was out of the ICU 6 days later, with minimal complications, feeling stronger every day, already doing hallway laps and feeling as I’m going to get out of here quicker than I imagined. Maybe it’s the muscle memory. Maybe it’s hopeful naivety. Maybe its the coffee talking, but right now, I’m going with it. 

I don’t mean to paint such a pretty picture though. It’s still been incredibly rough. The nights of sleepless boredom, fading in and out of the darkest corners of my subconscious through pain medications, physical frustrations, downright pains. But, maybe i’m just more emotionally equipped to handle the situation, or this does parallel the muscle memory found in running recovery….or, again, maybe it’s just the coffee talking. It isn’t easy either way. I wouldn’t wish this experience on anyone. 

And I’ll just leave it at that right now, because there will still be a lot of waiting and seeing. Waiting to see if recovery stays on this quickened trajectory or waiting to see if the stays stays or grows. That’s where, in part I’ll be placing my focus. Then, on the other hand, I will not be waiting to see what happens with running. I’m going to dedicate myself to running closer to my honest abilities at I sit with patience through everything else. 

Thanks, as always, for helping me get here. 

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Do over

I’m fine…but I wasn’t completely emotionally prepared to be back in the hospital. The last few months have been non-stop, almost up to the point Laura and I fell asleep last night, so the reality that I would be back in the hospital, non-functional, for an extended period of time, never had the chance to sink into my psyche. But here I am. Laying in a hospital bed as the minutes and hours tick away till morning.

I drove to the hospital by myself, meeting my parents in the front lobby, but nothing seemed out of place. I go to this hospital all the time for CT scans, chemo infusions, and follow up appointments. I entered the registration office, but that triggered nothing. I saw another patient with various tubes and mechanical apparatus hooked up to her body, being helped into a wheelchair to be taken to her prep room…but that wasn’t me. We were given directions to the sixth floor, a place I haven’t been since I left after finally being released from the hospital a year ago. Still nothing.

An imposingly tall and stout nurse, but with a happy demeanor, and covered in red scrubs led us away from the registration desk and towards my room.

And then it came back. These lights. This smell. The various machinery sitting lifeless. The bland colors of the hallway. The nurses gathered and chatting at the main desk as they prep for the day. And then my room. It was even the same room as last time, tucked away at the end of the hall, which was a partially welcomed part of this experience as the interruptions are small and the view..well…decent.

The bed sat there ominously, exuding something between welcomed comfort and the despair of permanent rest. I felt resistant to lying down, unready to commit to the horizontal position that I would find myself in for the coming months. I’m unready…but also ready too. Ultimately, it doesn’t matter what I am, surgery comes tomorrow.

I finally relented and lay down, setting up my computer and getting settled in, waiting out the clock. Almost immediately the expected, necessary interruptions from the nurses began. My hospital gown, these long pieces of cloth in desperate need of clasp and aesthetic updates (dear hospital, the 70’s are over…stripes and polka dots are in…and velcro exists) was laid on the bed for me to change into. Questions were asked. My vitals were taken.

“Do you exercise?”
– laughing a bit, knowing what why she asked, “Yes.”
“Are you a runner?”
– “Yes. I am.”
“Do you know why I’m asking?”
– “Yeah, my heart rate?” (it was 45)
“Yeah, do you hear that a lot? I mean…that’s a good thing!”

She hooked up a pulse counter to my finger. The machine beeped alarmingly. It repeated.

“Oh, I know…it’s low.” she jokingly scolded the contraption.

My port was then pierced, and blood was drawn while I typed away, trying to finish up some work as soon as possible, to get that off my mind. I’ve been through this before. I don’t feel the need to prepare for pokes, prods and pricks anymore. Nurses do their thing and I do mine.

Another nurse came in, gave me a menu for “clear liquids” and then promptly left. I scanned the offerings, knowing I was going to order nothing.

Vegetable broth. Chicken broth. Ginger ale. Coffee. Diet Gelatin. Etc. Etc. Etc. No thanks.
I convinced my parents to get me a cup of coffee from the hospital Starbucks downstairs…good enough.

The resident to my surgical oncologist then entered, a friendly face and calm demeanor, introducing herself, getting to know me a bit, and explaining the procedure for the day and tomorrow morning. Second verse, same as the first. And that was that.

And here I still sit, becoming slowly acclimated to the coming storm, waiting out the clock, cleaning off my list of obligations, remembering the sights, the smells, the sounds, and pushing away the sense of dread that tries to get inside, forcing me to remember all the discomforts (to put it lightly), unpleasantries and difficulties that began the second I opened my eyes in the ICU just over a year ago.

But I’m ready…enough. It’s going to come and I’m going to meet it head on and I’m going to get past it as soon as possible. I’m not just going to let it come and consume me, then let it pass. I’m going to meet it, and push back. I’m going to force myself to get stronger at every opportunity. I’m going to fill my lungs. I’m going to feed my determination.

But not yet. That time will come. Right now…we wait, go to sleep, then wake up on “the other side”, yet again. And I’m ready. See you then my friends.

Interview with Aaron Edge

(I’m still working on a side project titled, Thumbs Down. Hopes Up., but as the site is getting built, I didn’t want to delay in getting this interview I conducted with Aaron Edge out into the world.)

Aaron is a friend of mine, though I wish we could have met under different circumstances. Our paths crossed after finding ourselves navigating the worlds of disease at about the same time. Aaron is managing the physical and emotional realities of his MS diagnosis while holding desperately to the life he lived before the complications set in, cycling, running, hiking and raging as often as possible. In this interview he details a bit about his experience without pulling punches and with complete honesty. People like Aaron don’t enter your life often. I’m fortunate to have him stumble into mine during my own obstacles, and I hope you all have someone similar in yours.

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Describe your life leading up to diagnosis and how drastically it changed, both physically and emotionally? 

I was at the top of my game, physically. I was ecstatic to leave the heat and the bloody streets and the roaches of a city of no angels. Los Angeles was not for me, and though I met some great people there (and created some interesting music), it was not a healthy environment. I had a killer job at Southern Lord as its art director, but it wasn’t enough to keep me happy in LA. And a curse (which I think I might have) can follow people like a stray, hungry dog that foams at the mouth, ready to sink teeth… my unhappiness was only going to grow. My wife and I packed up everything, moved back to the Northwest (our home) with giant smiles on our faces, for a better quality of life, our friends, our family. The curse followed me, and I was diagnosed with multiple sclerosis on March 6th of last year.

On a daily basis, how prevalent is the pain… how do you manage it emotionally… and how do you find the drive to continue on, seeking value and intensity in living, at this point?

I’m in chronic pain, every minute of every day. To be clear, I wake each day with “lead filled” legs… heavy and stiff. My hands feel as if run over by trucks, my neck can’t be stretched or an shock, electric in description, flows through my whole body with shooting pain. I take 22 pills, per day, some that help with pain, some with sleeping through the night, some as vitamins to help build back up my body’s ability to fight itself from attacking itself. I can no longer play any kind of musical interment, which was about half the joy in my previous life over the last 20+ years. I run and ride half as far, and half as often as I used to. I work at a bike shop, where the pain of hauling around two-wheeled devices is wearing me down. I can’t quit, because I need the dough. I can’t hold out, because I’m totally wearing thin, physically and emotionally. I’m depressed, I see little future honestly. Everything, and I mean even the things, that people don’t talk about in public, is different/worse. The only positivity I have is with my wife, we love to do and experience all the same things. But, love is only one portion of an existence, a human being must be happy with and within themselves. I’m not a happy person any more.

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What are your thoughts on an “afterlife”, and have they been shaped in any way now that you have been forced to face your mortality in a more immediate sense? 

I have none. I make no plans, I have no future. I wake up every day in pain, I go to bed every night in pain. With my wife, I trudge on, but neither of us know where we are going. I put on a mask of positivity for the first year after diagnosis, but I grew tired of the weight. I had become a spokesperson for the perfect survivor of MS. It was a lot of pressure on me to be that guy. When I took off the mask, my skin peeled off with it man. I feel empty and with all nerves exposed…

The experience of living with disease is comprised of an existence that hits all points of the emotional spectrum, from desperation to fear and from hope to accomplishment. What has been the trajectory of your emotional experience and have you felt value in embracing opposite ends of the spectrum?

I went backwards: hope, accomplishment, fear and now desperation.

The love you have for your wife is obvious in many of your expressions in social media, but managing a relationship through all this is undoubtedly problematic. What challenges have you two faced since diagnosis and how have you worked through them?

It’s been really, really tough on us… especially for my wife. At least I know what I’m going through, what hurts and when. She just watches me suffer, sees when things are tougher for me, and can only be there for me if needed. After the first year of my diagnoses, things leveled out a bit for us. We finally knew what worked, what didn’t, what to avoid and what things brought me comfort. We were both working, continuing our lives (together and separately), things became almost “normal”. But our normal is a nightmare for me, and on my hands and other things. Any time I get stressed out, my hands immediately hurt worse. Any time I am exited, for the better or worse… more pain comes with it. It’s all about nerves, with MS, everything is connected. It still hurts me to open the door for my wife, carry my share of groceries with her, sometimes I’m not feeling well enough to hike or run with her either. I cancel going out at night with friends, or shows. We are doing our best, and ya know, I can’t think of any other couple that would have made it through a move to/living in Los Angeles + multiple sclerosis. I owe it all to Rachel’s commitment to me, to us. She has fought so hard. She is such a strong, creative, straight-shooting woman, with not a single enemy on the planet.

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Regarding being a “spokesperson for MS”, why do you feel inclined to step away from that, somewhat self-appointed, role? 

Because it’s all such bullshit for me to try and continue it. It helped me get out of bed, to fight. It gave me a reason to live, at first. But, it’s not right for me to try raising that torch now, lighting a way for myself and others in similar situations. I don’t have the strength to do it any more. I don’t have the strength to lift that banner. I’m done trying to be a hero, I’m just a very pissed off human being, a guy in a lot of fucking pain, who is tired of faking a smile. And, I’m not the only person in chronic pain that wants to give up/give in to it.*

*…that said, I must thank everyone who did follow me, hold my hand, give me pushes when I needed them. So many folks bought shirts, records and attended live concerts where proceeds went to help my medical bills. $40K was paid off, a good portion of it because of awesome people around the globe, most I have never even met. That’s incredible and I won’t forget that/them. But, now the focus should be on someone else that needs all the encouragement that I once received. Let’s please find a new poster boy/gal.

I don’t think a lot of people really understand the emotional weight of living with disease, and what “hope” and “fear” mean in this context. Explain what “desperation” feels like…and why “hope” and “accomplishment” have dissipated for you.

Desperation is me wanting to buy a gun, because when it all becomes too much, when I can’t deal with it any more, I’m going to stop fighting. That’s harsh, but true. Not everyone is willing to admit that they think about that. Hope is for people that can’t make change happen for themselves and wish for things to happen or change. Accomplishment is me keeping a job and my marriage together. I believe in “do or don’t” and I don’t believe in “meant to be”, and it’s bullshit to think that I should look to an empty sky and pray to something that isn’t there. That’s time wasted. Also, my disease isn’t a “sign”, I’m not being “tested by God”, it’s a lame disease that wasn’t a gift to me, not a trial, and not a test of faith. Faith is for the weak sheep on this planet. Everyone dies, we know that to be certain, we wait for it to happen, or when we want to clock out, when we would rather not suffer any more, we pull our own plug.

[You obviously caught me in the best of moods here Scott.]

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Do you feel a need to leave behind some sort of legacy when all is said and done (whether that is abbreviated from MS… or a full life by some other manner)… and if so, what is it?

Just this: “That guy Aaron went through hell, and he fought hard. He still ran up a bunch of mountains, he started those hashtags like #furtherfasterforever and #upness and #nevereasyalwaysworthit that help unite a bunch of rad people around the world. He rode a bunch of miles on his bicycle, proving that some intense pain can be ridden through. I still have that orange bottle that he made, and those shirts, that art, and those recordings too. He sure impacted a hell of a lot of people and got them off their own asses.” Or, how about, “I have no idea how I would have reacted and lived with something as terrible as MS. I have no fucking idea what that guy went through.”

You are obviously an individual drawn to extremes in perspective and experience, and I’ve seen this through your drive to keep fighting through MS and motivation to be physically active, seeking literal “upness”, if not emotional. Do you feel it’s that much harder to reconcile your MS diagnosis against your previous physical abilities? 

Much harder. As you know, physical well being is so important in a healthy state of mind too. Just today, my hand pain and “shocks”* became so bad that I turned around from one of my rides, thus reducing my planned milage. Because of that, I felt defeated as I rode home.

*Lhermitte’s sign is an electrical sensation, often strong and very painful, that runs down the back and into the limbs. In many MS patients, it is elicited by bending the head forward (and in my case, also after my body undergoes a hard workout). Imagine getting electrocuted, exactly the same awful feeling.

Does the diagnosis bring you down even further, or compel you to continue seeking as much of your previous life as possible? 

At first, I was pumped up, I faced it like a home invader… head on, I wanted to force it out (of my body). But now, it’s worn me down. I’ve started to accept my limitations, but not without the depression that goes with being defeated. I’m extremely against competition between humans, be that sports or otherwise. But, oddly, I found myself pitting myself agains MS. As if I could win, I put on the mask every day, I carried the PMA flag into battle. It has made no difference. I’m just more tired from being in the ring. Every general knows when their army has lost. It’s not easy to loose a fight against your own body though, against my own army. My best assassins have assassinated me.

aaron bike BW

What advice would you give to someone newly diagnosed with MS?

That’s a tough one. I only went to a single MS meeting and it was terrible. I saw many folks in wheelchairs, some were blind and needed handlers, others could barely speak, slurring and rolling their words while spitting. Everyone wanted to complain about their own pain, and tell me how terrible it will get someday for me. Thanx. Many of these folks, at least at this large 200+ meet-up that I attended, seemed to have saved up all their complaints and stories just for me because I was newly diagnosed. I was crowded around and then I was crushed. I never went back. So, I’m not the best proponent of AA-style meet and greets. I also might not go about telling the world about my diagnoses as I did. I’ve always been a very straight-shooter, very public about my feelings and stance on ideas, via my bands, art, etc.. My story was blown up by a few incredible money-raising campaigns for my medical bills and when one of my last recordings was released. I was getting fan email, doing interviews weekly, and it spread all over the internet. Someone else who is newly diagnosed might have trouble with the spotlight that it cast on me. I really have no advise for a newly-diagnosed person. I don’t want to scare them, I don’t want to tell them what they are in for. I don’t want to talk to them at all, actually.

And what advice would you give to supporters?

Rally for them, ask them what they need from you without being overbearing. Find out information on your own, but do not tell them about new studies and cures and wonder drugs. The recently diagnosed has way too much fucking information to digest from their most important source: their neurologist, who has all the correct info, not something you read on line. Ask them politely what is tough for them in while in public. For instance, when my hand pain is at its worst, I constantly rub my hands. It would be awkward to be asked all the time, “hey man, what’s up with yer hands? Ya nervous or something?” That gets really old. It’s also hard for me to carry anything heavy or open doors sometimes. My close friends won’t make a big deal about this in public.

And to care-givers?

Ugh, another crazy hard one to answer. The care-giver that I know is my wife, Rachel. I just asked her, and she replaid, “It’s case by case and a day by day thing. Have patience with the diagnosed person. With Aaron, I kept out of the way and let him come to me when he needed help. I didn’t baby him though. It’s hard to find the balance between giving enough and giving too much.”

Despite all your pain, adversity and emotional struggles, what are the experiences or perspectives that give you moments of relative relief in your days?

Honestly, the only times that I feel relief are:

1.) When I’m sleeping, because that’s my only totally pain-free hours.

2.) When I see someone who is worse off, missing limbs perhaps.

3.) I can’t think of another…

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If you could have known you would have MS early on in your life, how, if at all, would you have lived differently?

I would have joined some band that was incredibly popular, no matter what kind of music (even terrible music), so that I could travel the world while on tour and see as much of this planet as I could. I would have sold out, in my eyes, creatively. But, I would have seen it all. Now, I’m scared to even camp overnight alone. I need particular accommodations, and can’t be too far from bathrooms (people with MS often have bladder issues and worse). I can’t walk in dimly lit rooms, because my sight is miserable in dark situations now (MS effects my optic nerves and my vision gets cloudy) and I might fall or be embarrassed by how I walk, now off-balance. I would have started running and cycling sooner as an adult, or never stopped as I became a teenager. I would have done more activities with my Father, more hiking and skiing. I didn’t do that enough, I didn’t hold onto that connection with him. Perhaps I would have not gotten tattooed, so that the United States Coast Guard would have accepted me when I applied in the late 80s. I would have seen the world that way, perhaps. I would have incredible health insurance and a great salary for myself and Rachel. There’s too many things I guess…

In relation to MS awareness or research, are there any organizations you respect and would suggest people look into if they want to get involved? 

Not a one, I’m not in that loop. I never do research, my neurologist is my only information. I will say that the drug, Gabapentin, brings my pain level of 10 down to about a 6, so I will give that drug a shoot out. The only side effects are drowsiness (that never effected me), weight gain (that certainly did effect me) and depression (which might be effecting me, but I take an antidepressant as well).

So I know you are stepping away from Upness for the reasons you outlined above, and you’ve mentioned working on a new project. Do you want to explain that a little and what you hope to accomplish with it? 

When you and I first started talking, I had an idea in the back of my mind. It was something less positive and more punk. It’s on the back-burner, like so many other things in my life (travel, bands, etc.) until funds, time and stoke are available. I’m just trying to stay afloat right now, no plans, just head above the water while the sharks circle ‘round me.

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Can you give me a rundown of the projects in which you’ve been involved (music, art, etc.)?

Bands I’ve been in (alphabetized):

2 Men Dead, Alternate Society (drums)

Anonymous (bass/vox/drums/guitar)

Aurora (bass)

Autumn (guitar/backup vox)

Backside Disaster (guitar)

BFN (drums)

Blood Buddies (drums)

Brothers of the Sonic Cloth (drums/backup vox)

Catalyst (vox)

Christ (guitar/vox)

Day of Lions (drums/samples)

Dwell (drums)

Eshas (drums/guitar/bass)

Flintlock (vox)

Genuine (drums/guitar/bass/vox)

Great Anti-listen (vox)

Grievous (guitar/vox)

Grip (bass)

Hand Be Damned (drums/guitar/bass)

Harbor Island Mutiny (guitar/bass)

Harkonen (vox)

Hauler (guitar/vox)

Hellephant (drums/guitar/bass/vox)

Hellvetika (drums/guitar/bass/vox)

Himsa (guitar/backup vox)

Iamthethorn (guitar/drums/bass/backup vox)

Juxtafunk (bass)

Köra (vocals)

Les Gants (guitar/bass)

Lumbar (drums/guitar/bass/vox)

Mountain of Teeth (guitar/vox)

My Favorite Backpack (drums)

Ohmega (drums/guitar/bass)

Peril on the Sea (guitar/bass/drums/vox)

Potential Idol of Destruction (drums)

Process Black (guitar/bass)

Raw Umber (guitar/bass/drums/vox)

The Red Sect (drums)

Requin (bass/backup vox)

Roareth (guitar)

Rote Hexe (guitar/vox)

Set of Standards (drums)

Spoken Word (drums)

Structure 24 (vox)

Swallowing Swords (guitar/vox)

Swearengen (guiar/vox)

The 6-Minute Heartstop (drums/samples)

The Horde (drums)

They Shall Take Up Serpents (guitar/bass/vox)

Tricycle (drums)

Tsuga (drums/guitar/bass/backup vox)

West of Zero (guitar/bass/vox)

Design clients (alphabetized): 

1-2-3-4 Go! Records, 3 Inches of Blood, 800 Octane, A Chance Without, A Fragile Shade, Acephalix, Advent Records, Aiden, All Hallows Clothing, Alpinist, Anatomy of a Ghost, Anchor Records, Atreyu, Aurora, Backside Disaster, Balaclava, Baptists, Black Breath, Blackcloud, Black Cobra, Blackout Records, Bleeding Through, Bluebird, Bobby Hellfire, Body Graphics Tattoo, Boris, Briz, Brothers of the Sonic Cloth, Brutal Fight, Burning Love, Cascabel, Church burner, Clarity Process, Clifton, Closed Casket, Countdown to Life, Crosstide, Darkest Hour, David Bowie, Day of Less, DC Vegetarian, Dead Again, Dead in the Dirt, Dead Teenager Records, Death By Stereo, Drainland, Drop Six, Drown Mary, Dualesc, Dwell, Eagle Twin, Early Graves, Earth, Eat Your Heart Out, El Cerdo, Emerald City Tattoo, EMI Records, Enter the Race, Everything That Kills, Everything Went Black, Excursion Records, Fall from Grace, Fearless Records, Fight Scene, Figure 4, Fontanelle, From Ashes Rise, Gatsby’s American Dream, Generally Nautical, Go Booking, Golden Saddle Cyclery, Goodfellow Records, Gorilla Mind Society, Harkonen, Heart, Hell Promise, Hell’s Kitchen, Her Candane, High on Fire, Himsa, Ichabod, Inked in Blood, J Shogren, Josh Bragg, JoWood, Lahar, Lebanon, Longshot Records, Mark D., Martyrdöd, Metalblade Records, Microsoft, Middian, Might as Well be Dead, Misantropic, Monster Skateboards, Moth Attack, Mudshark Studios, Myiasis, N.C. Punchout, Neverstop, New Age Records, Nihilist, Noothgrush, Note Farm Records, Nuclear Death Terror, Of Feather and Bone, OFF!, Oiltanker, One Last Thing, Paul Speer, Pelican, Planks, Porkchop Screen Printing, Prosthetic Records, PRSfit, R Styles Records, Rainstorm Records, Rainstorm Studios, Rapid Fire Process, Rat City Rollergirls, Reproacher, Revelation Records, Revenge of Me, Rise Records, Rocketstar Records, Running Wild in Cordova, S2C, SanDisk, Sarabante, Seven Sisters of Sleep, Sewnshut, Shadows Fall, Shamelady, Siris Records, Skarp, Sleep, Southern Lord Records, State of Grace Records, Steve Carter, StonerRock.com, Summon the Crows, Sunn O))), Temperance Records, The Accused, Agony Scene, The Alliance, The Butt Frenchers, The Cassettes, The Cinema, The Escaped, Murder City Devils, The Solo Project, The Vegan Shoe Store, This Time Tomorrow, TKO Records, To See You Broken, Unlovable Inc., Urban Khaos Clothing, Varsity Finish Line, VegNews, Vicci Martinez, Victory Records, Watch it Burn, Weedeater, Winter, Woke Up Falling, Wolfbrigade, Xibalba, YOB, Zeke, Zoroaster

Design website:

www.aaronedge.com

Recent work:

www.aaronedgedesign.blogspot.com

Last musical endeavor:

www.facebook.com/thelumbarendeavor

Final Word

Because I wish to be cremated when dead, the highest honor bestowed to/on me would be an inscription on a park bench along the Wildwood running trail in Forest Park, in Portland, OR. It would read, “This life is black and white, there is only pain and pleasure, with room for nothing in between.” — Aaron D.C. Edge, 1973-20XX

Hopeful Horizons

And suddenly…it’s here.

To be completely honest, I’m not scared. What exactly is there to be scared of? It’s not like I have a choice really. I’m going to lie down, be put under, and wait to come back up. Everything else is out of my hands. Sure, there is the fear of not “coming back up”, but if I don’t…I won’t know it. So what do I have to be afraid of? I have no control over the situation, so it’s not my responsibility. That, lies in the hands of my capable surgeon…so it’s HE who should be scared, but for the sake of those I love, I hope he’s not. I’m sure he’s not. I trust him and expect relatively positive news upon coming back up…whenever that is. I never kept track of how long I was under last time…all I know is that by this time next week, my breaths will be taken by machines. And when I wake up, I’ll seemingly be more tubes than I am human, like some sort of sci-fi humanoctopus-like creature. But I’m not scared.

I’m not even scared about the discomfort that follows the surgery. I may be a bit concerned, hoping not to undergo some of the unpleasant procedures that followed my previous surgery, but that’s only concerning…not scary.

In part, I’m not scared, because I have hopeful horizons to look forward to. There is the horizon free of cancer (a long shot, admittedly). There is also the horizon free of chemotherapy, which is a beautiful vision. As detailed in a previous post, we ARE going to pursue a “wait and see” strategy, where we leave chemo out of the equation and see if the chemo stays stagnant. Through that strategy, I’ll be able to run towards a hopeful horizon. Literally. Running. Running towards it.

So I’m not scared, because I’m looking past the surgery, past the hospital stay, past the discomfort, past the months of recovery, and towards that time where I’ll get to run again. I’m looking towards that point where I am free to get stronger and stronger, faster and faster….back to the person I used to be. And I’m driven there by the small taste of that I’ve felt these past few weeks, where I’ve been taken off the drugs leading up to surgery, which has allowed my body to let loose.

And damn it feels good. Periodically, I’ve felt these moments where my body has “flipped the switch” as I like to call it….where running becomes so repetitive that every part of the body that resisted finally relents, and a switch is flipped, the body turns on, and running becomes superhuman. It’s indescribable, but well known by those who do experience the distinct sensation.

Still, it’s odd sometimes. Off these drugs, the past few weeks, I’ve been running more and more. 50 miles a week. 60 miles a week. 10 miles each day. Faster and faster. The body has turned around so quickly as the drugs dissipate from my body..but then….it all comes to an end. Even now, so close to surgery, I catch myself thinking, “I have cancer?” My legs turn over smoothly, my breathing stays rhythmic, and I sense my pace increasing even as the miles pile up. And it’s all going to come to an end…quite abruptly. Like running off the edge of a cliff. If it wasn’t for the damage chemo has done to my body, the blisters forming on my feet, the neuropathy causing pain from compensated form, the wall of shortened breath from depleted red blood cells…I would be the marathon training runner I once was just over a year ago.

But I’m not.

I’m still the cancer patient running off the edge of a cliff. I’m the runner going into surgery in 6 days, to wake up a destroyed physical being, hoping to bounce back as quickly as possible. In the meantime, however, I’m holding on to this delusion…for the next 6 days anyways. Still…it hurts.

I attended a well populated Tuesday night Personal Best Training practice (a spectator, as I had already run in the morning) and read the workout for the evening….a tune up for the race this Saturday. I felt the excitement and anticipation from all the runners. I joined in on the race discussions, laughed with friends, and felt pulled deep into the experience…but unable to immerse myself completely. I needed to meet back up with Laura after her run, but that wasn’t the only reason I chose not to watch the actual workout. That inability to take part dug too deep. I want to be a part of all that again…so much, and the physical strength I’ve built up to this point tells me that doing so can be part of my reality again. Just being back in that training environment lit another fire under me. I’m not done. I’m ready to, again, do whatever it takes to reach my physical limits. Distance. Strength. Speed. Rest. All of it. But as I make these gains (albeit, slowly), I also know I’ll be knocked back to square one before I can really start to even test myself.

6 more days.

But there are still those horizons, and I can still see them from here. I can see the smallest efforts after surgery, the shuffling down the hallway rolling my IV rack with me, the walks on the treadmill, the painfully slow jogs, the increasingly longer bike rides, the short runs, the longer runs….and then onward from there. Stronger. Faster. UNRESTRICTED. Towards a hopeful horizon.

I’m not scared. I have nothing to be afraid of. I, however, have plenty to look forward to. Meet me on the horizon.

All Systems Stop

This morning I met with my surgical oncologist to follow up about my latest CT scan and solidify plans for the operation going down in 2 weeks. I assumed the CT scan would show little to no change in tumor growth and that we would be pressing forward with the surgery as scheduled, so I was a little surprised to hear him offer me an option. Now, I’ve learned over the past year that no schedule is set in stone and to always expect changes, but after having made the appointment for surgery, get the vaccinations and go through all the little details leading up to the operation, I was definitely a little surprised that I was being offered the option to back out of surgery completely. The reason for this option to withdrawal is rooted in the confusion of both my type of cancer and my positive physical progress since the last surgery.

With each unchanging scan, my oncologists are encouraged and yet confused as to why I’m doing so well. They can point to the benefit of the HIPEC surgery, of course, but they can’t fully admit that chemotherapy is causing this stagnation. They both admit that patients in situations similar to mine “rarely ever” respond to the chemotherapy treatment and the tumors continue to grow, but for some reason that just isn’t the case with me…but they don’t know why. Both oncologists have said, “SOMETHING is working, we just don’t know what.” And so that leaves them in what they’ve also said is “unchartered territory”, and subsequently a plan of action that isn’t marked by defined outcomes. They aren’t sure what they are doing is working or not. That means NOT having surgery is an option.

Not having surgery performed means we would be in a “wait and see” scenario. Because this cancer is so slow growing, we would wait and wait and wait to see if it starts to reproduce rapidly and out of control, necessitating more chemotherapy and, ultimately, another surgery. However, we can also do the same AFTER a second surgery. What the oncologist could tell me with much greater certainty is that my type of cancer has a very high recurrence rate and the likelihood that it will come back even after surgery or waiting it out, is significantly high. I knew this and was prepared for it.

In the meantime, he is encouraged that I am “non-symptomatic”, meaning the cancer itself isn’t causing complications for me. I’m not experiencing intestinal blockages or other organ failures. The only thing that is taking away from my quality of life at this point is the chemotherapy. So the only thing I wanted to know in today’s meeting is if AFTER surgery, will I have to go back on chemotherapy? That is what I undeniably DON’T want. If cancer comes back, or if cancer starts to grow and cause complications…fine…we’ll deal with that. That’s expected. But if I can go a year or two or 5 or 10 without chemotherapy…then I’ll live with cancer. Screw it…I’ll enter the “fastest cancer patient alive” category if I have to. And should cancer come back, THEN we’ll deal with it.

Fortunately, my oncologist didn’t disagree. He also felt that a life without chemo would be best and that my medical oncologist will most likely agree that we should try the “wait and see” approach after surgery. To reaffirm my confidence in this approach, I outright told him that if we have to “experiment” through this process, I’m completely on board. Ultimately, what do I have to lose? If, by chance, chemo is NOT actually keeping my cancer at bay and it’s something else, than I want to try take that chance. And if we find out that, for whatever reason, I am responding to the chemo….then we go back on it. It’s that simple.

That still leaves the consideration about the immediate surgery on the table though and I had to make that decision. It didn’t take me long to decide, however, and before he left the room I committed to carrying through with the operation. Basically, I still fully expect cancer to come back sometime down the line and I can only hope that it’s VERY FAR down the line, but time…and strength…is truly of the essence here. Let’s say I wait out the cancer at this point and see if it comes back, only to have it cause severe complications in 5 or 10 years, that means my body is most likely 5 or 10 years compromised. I don’t want to risk undergoing this extensive surgery on compromised terrain. I’ve been building up and trying my best to prepare for this surgery, to make sure i’m ready to recover as quickly as possible, and so I feel my best bet is to undergo the operation as soon as possible, with a body that is as primed as it can be in this state, in the hopes that recovery will be quickened, cancer will be minimized and I can spend the next 5, 10, 15, etc. years free from complication and chemotherapy.

And then if I have to do it again…then I do it again.

But for now, I’m relying on developed strength and the hope that this surgery will offer me a chemo-free life much further into the future.

I want to run freely again. I want to go through the surgery, recover, avoid chemotherapy and slowly build until I’m running unhindered for as long as I possibly can, reaching for goals set previous to diagnosis and seeing how close I can get to them…one more time.

And that’s the plan. Despite the options he gave, my surgical oncologist agreed with my perspective, felt now was the best time to do surgery and promised he would do his best to get as much of the cancer out as possible…and then we’ll wait and see. I’ll go through CT scans every so often in order to keep tabs on the growth, but as it stands, we are not going to pursue chemo treatment after surgery (aside from the treatment that is part of the surgery itself). But hey…plans change.

To give some specifics, the surgery is the same as last time. A debulking process with the HIPEC treatment, possible spleenectomy, possible bowel and colon resection and partial stomach removal. The additional fun, however, (aside from the potential organ removals) will be a few days of continuous chemotherapy drips through 5 tubes left within my abdominal cavity. Then follows the long, unpleasant process of recovery.

With a hopeful trajectory.

Now it’s one week of vacation with my son, one more week of preparation leading up to the More Fire Run and then all systems go…or stop…whichever makes the most sense.

Needs and Necessity

A friend recently informed me that her mother was diagnosed with a form of cancer and wanted to know, from the patient’s perspective, what is most needed in a situation like this. I remember right after my own diagnosis many people coming forward and asking what I needed, but everything happened so quickly that I didn’t know how to answer. Turns out, there were needs, but I just didn’t know what they were. Those needs were to arise later, after surgery. In the moment, however, I didn’t really need anything I thought. I was physically able, mostly, and just had to run out the clock until surgery, occupying myself with one thing or another. Soon, though, I did need something. Time, space and freedom. I needed the time to figure out what just happened to me, what was going to come and how to handle it all. I needed the space to sit with myself, to sort through my thoughts (often through this blog) and pull from all my previous experiences to find my way through the emotional darkness of it all and find stable ground. Most importantly, I needed the freedom to handle things my own way. I DIDN’T need advice. I DIDN’T need “cures”, “god”, or anything else people wanted to hoist upon me in the moment. What I needed was complete acceptance towards my own way handling my diagnosis. That was all before I got split in two though.

After surgery, I needed much more. I needed the food others cooked for me. I needed comfortable space to lie and recover. I needed, surprisingly, a LOT of quiet. Just normal conversation felt abrasive and I could only withstand about an hour of it before I needed to retreat to my own sort of sensory deprivation environment. But then, I started to get better, and yet, still needed that same sense of freedom to find my way through the stresses. The dynamics of the cancer experience are so continuously shifting that I needed that freedom to adjust and compensate for all the changes. I didn’t need a rigid path of recovery or expectations placed upon the timeline of my life. I didn’t need to get a job as soon as possible, or push myself physically, or anything that others felt I needed. I needed to be comfortable with every decision I made.

And this is what I told my friend, “Ask her what she needs.” Because it may be nothing, or it may be a lot, but it must be trusted that the patient knows best.

Now, in my situation, again counting down the days to my coming surgery, I need that same freedom to prepare..in my own way. And right now, my preparation involves running…as much as possible. Others have expressed their concern with my physical efforts, pushing myself and stressing my systems while cancer and chemo still enact their deteriorating processes on my body. From the outside, I understand why others feel rest is best…but I think they are wrong, on a number of levels. Cancer and chemo are about weakening the body and so it’s a strong body, a “strong terrain”, that is needed to fight back, against both. Then there is the complete destruction that is the surgery I will undergo, and the last thing I want is a weakened body that will deteriorate quicker, with less muscle to waste, with compromised systems that can be ravaged by weeks of passive rest, and a terrain ripe for infection.

And that’s why I’m running right now. I’m trying to get as strong as I possibly can, through the way I know best. I want to be as primed as I can before I’m completely wiped out, knowing that I did everything in my power to hold off the deterioration, to gain even one more day of reserved strength, so that when I’m able to get up and moving again, the recovery will come that much quicker.

“Use it or lose it” is often repeated in running culture, because that’s how the body works. We push and push and push for physical progression, running day after day, week after week, month after month, year after year to reach our individual goals, but the ratio of building to breaking isn’t fair, and as soon as we go sedentary, so do our bodies. Within just a couple weeks all that work we built to the point starts to slip away, and by three weeks we’ve lost a significant portion of that work. A month off and it feels like starting all over again. There is a lot of truth to the “use it or lose it” sentiment, but recovering after so much time off comes back quickly as well. Our body remembers.

And so I’m counting on my body to remember. I’m counting on my body to remember what it is to recover after surgery, and I’m doing that through physical progression, through running. The last thing I need to do is rest. Pretty soon I’ll be resting for weeks and months, weakening and weakening until I get start making forward progress again.

I leave Friday for Ocean City, New Jersey, my own running mecca (out of circumstantial necessity), where I run the boards every summer. I absolutely love it. Last year I wasn’t strong enough to run and resorted to riding my bike up and down the coast, but this year I’m strong again…strong enough, and so I want to make the most of it. This is marathon for the year. This is what I feel like I’ve been working towards, to again experience the joy and exhaustion of early morning runs along the boards next to the beach, with no other care but to finish the distance. And if everything goes well, I hope to get in one 20 miler to finish the week, as a last hurrah, before I come home and prepare for surgery, to not run for months and months and months. Ugh.

I know some would not like me to press myself so much. I know some want me to rest, to relax, to prepare for surgery by…well…preparing for surgery, I guess. But here’s the thing…that’s not what I NEED.

I know what I need and right now I need to run. For more reasons than just physical strength, I need to run more than anything else right now. So that’s what I’m going to do.

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Speaking of running, the More Fire Run will be held on Sunday, August 10th (the day before I go in for surgery). It would be awesome if as many of my friends (that’s you) could come out and join in on the fun that day. Click the image at the top right to get the details.

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Finally, when I get knocked out by anesthesia on the morning of the 12th, I’ll be out for days. Some of those days I’ll be kept alive by machines, but when I come to, it would be awesome to see what running fun I missed. If you feel so moved, feel free to hashtag #morefirerun on your running photos that day, so I can wake to images of friends out enjoying life and give me something to escape to instead of focusing on the hospital environment. Thanks.

Stuart Scott’s Jimmy V Perseverance Award Speech

I don’t need to say anything else…I can just replay this again and again.