Spaces In Between.

Posted on January 5, 2015

3


20150104_125626It’s Sunday night, it’s quiet at home, and I’m the exhausted. I’m not sure if it was yesterday’s cross country skiing, today’s powder turns at Discovery Basin, or if it’s from tonight’s curling match my friends and I just won at the community ice center. It doesn’t matter which, not yet, because this is exhaustion from living. I’m flat tired from living as much as I could. In a few day’s time the exhaustion will be different, a result of the chemotherapy drugs coursing through my veins. But not tonight.

On Wednesday of this week, I head back to St. James Oncology to begin the final ‘mop-up’ chemo. Four months, every other week, I’m scheduled for a four-hour infusion at the hospital along with and a take-home 48-hour drug pump (similar to the man-purse I had pre-surgery). It’s a different potion, a mix of a couple drugs–officially called Oxaliplatin, but referred to as the cuter sounding ‘FOLFOX.’

This new recipe comes with a new host of possible side effects- queue the fine print- not only your run-of-the-mill nausea, vomiting, diarrhea, and fatigue, but most concerning, neuropathy (tingling numbness, pins-and-needles pain, and hypersensitivity to cold sometimes lasting years). Not only do I get to look forward to that bag of treats, FOLFOX also comes with a possibility of persistent 1472996_10100137014154769_2100375312_nhiccups. I’m not making this stuff up.

The good news is that, as a result of a successful surgery–clear margins and no lymph nodes–my follow-up chemo has been reduced to four months from the previously thought six. Additionally, my Oncologist basically told me that I was on a short leash; if anything feels/seems goofy, he wouldn’t hesitate to reduce dosage, or even stop if necessary.

Goofy… like persistent hiccups, or something.

So in the meantime, I have been living in yet another window of relative normalcy; a space between the dark clouds of this journey through cancer. And trying to make the most of it.

For the most part, my recovery from surgery has been solid, even though I feel like I’m plateauing a bit of late. I have two persistent issues that I’ve dubbed ‘The Bends’ and ‘Chipmunking’ (sometimes referred to as ‘prairie dogging’).

I was warned that my rear-end would likely be the longest lingering pain, and it seems things are shaping up that way. Right off the bat, it was evident that pressures on the area were painful, but I’ve found that when I stand up or sit down (applying and releasing pressure) there is a strange hurt that I feel simultaneously in my bottom and in my stomach. It’s deep in my core, as if my guts are still stretching and trying to reimagine a new life for themselves after 33 years. It’s not a striking pain, nor an ache, but a mixture of both-something I’ve never felt 20141220_115243before… hence the name ‘bends.’ It seems to subside after a few moments after the sit/stand transition; as if my innards have found their temporary home. A dose of ‘ugh’ is about all I have to defend myself against the ‘bends.’

Another symptom I’m discovering as I become more active, is ‘chipmunking.’ I’m pretty open about the sewn-up, solid state of my booty, so those familiar with the term chipmunking, may not quite understand (like when you have to go number 2 so bad it’s peeking out, like a chipmunk or prairie dog emerging from its hole). The more I’m active, the more I get a chipmunk-related sensation at the end of the day. What I suspect is happening, gravity creates constant pressure on my underside from my insides pushing down for a period of time. The pressure causes the still sensitive area to swell, causing achy pains on my tailbone and all those other internal pipes and organs. Frankly, it just feels like I’m carrying around a 25-pound load in my butt; I’m sure seeing me walk looks much like a toddler with a 25-pound load in their diaper.

IMG_2932My stoma has healed well, and has stabilized at a one-inch diameter (now that the swelling has passed). Speaking of 25-pound loads, my colostomy bag has been an adventure in itself.

I awoke on Christmas morning before my alarm, with an itchy sensation around my bag’s seal (the sticky ‘wafer’ on my stomach that attaches the bag to me, and protects my skin from the stoma output). I didn’t think much about it and lightly itched… my fingers became suspiciously gooey. I jumped out of bed and got to the bathroom to notice a vein of poo squirting out the side of the seal. It woke me up pretty quick.

I prepped my colostomy change toolbox– a routine of spreading out paper towels, adhesive remover, a new bag and scissors, a plastic grocery bag for garbage, stoma powder, skin prep packets–as I danced around the bathroom trying to keep poop away from clothes. The second I began peeling the wafer from my skin, the entire bag immediately dropped into my hands, revealing a perfectly shaped, two-pound poop pancake squished between my stomach and colostomy bag. Somehow during the night, the bag’s seal released and my stoma must have kept pushing poo under, instead of into, the bag.

IMG_2823As I cleaned up, the air and water hitting my skin started to burn. Underneath the shit pie, the enzymes were attacking my skin as I slept, searing skin layers away. A perfectly shaped scarlet circle was seeping (or weeping), an open sore to welcome in the holiday morning. I cleaned and changed my bag as best I could, but within an hour, that too, fell off. My broken skin was juicing so much, the new bag wouldn’t stick. It’s Christmas morning, I have a juicy, poopy, open wound with no ideas on how to proceed, and no access to and professional help I could foresee.

Detective Cassie got on the internet for tips, I doctored my wound. After we put our heads together, it became clear that it was time to channel my inner MacGuyver. I emptied my little drawer of colostomy supplies to see what I had to work with. I remembered my home-nurse say something about a moldable, Play Doh-like sealant material that people used to provide extra sticking power and extra skin protection. I had some of these Eakin Seals from the starter-kit I received in the mail, so I grabbed a couple of the discs that I learned out were originally designed to help burn victims. Jackpot. I molded one to fit snuggly around my stoma and grabbed another to spread over the rest of my vermilion ring.

IMG952690The bag stayed, my output went where it was supposed to, I enjoyed an great Christmas dinner with the family, and three days later I changed bags to see my stomach skin healing. Bullet dodged.

Aside from these growing pains-ones that I anticipate will either heal or I will adapt to (or both)- I have progressed to a point in which I can live again-if for only a short time. I can’t spend a day ripping double-black diamonds, or ticking off as many miles on the xc trails as I normally have, but I’m out there doing it… and regardless of my current aptitude, being able to do them and to do them with Cassie and others I care about, is all that really matters to me.

I anticipate this week, when I take my shirt off in the chemo room again (I suppose I should figure out a new technique… one of those things you have to be aware of as a colostomy user), it will be an interesting moment. I don’t know if I will welcome the drugs that will inevitably help me lead a long, cancer-free life. I don’t know if I’ll be nervous because I have some idea of what’s in store for me. Time will tell, but I don’t believe I will be scared, though… not then.

What is scary to me, is the possibility of seeing people I know sitting in those chairs.

In the time I’ve begun my journey, my next door neighbor was diagnosed with breast cancer. She has undergone a double masectomy and her hair has already fallen victim to the chemo drugs. Seeing her putting up holiday decorations with her kids or mowing the lawn is beautiful; seeing her receive chemotherapy drugs is frightening.

10847985_817719911621738_4941373612577872142_nEven more scary is the possibility of seeing my friend and role model, Dr. Sorini. Dr. Pete is a neurosurgeon in town and, while I was coming home from Iowa, he was diagnosed with brain cancer and underwent a risky surgery. Our paths have crossed numerous times through Mariah’s Challenge and the Butte 100 mountain bike race. Each time I see him, I am always struck by his generosity and the ease at which he shares his genuine nature. Seeing him speak to children about the power they posses to overcome life’s challenges and seeing him stop at the bike race’s aid station is beautiful; seeing him sit in the chemo chair is one of the most scary things I can imagine.

When facing one of the most difficult medical treatments on the planet, these are the things that scare me more than what the treatments will do to my physical self. I worry about others-how my condition affects Cassie, how to help others in a similar situation. I already know what these drugs do, their side effects, and how much fight you have to muster from the depths of your marrow just to feel a sliver of yourself again. No one deserves any of this, but seeing people you know and care about suffering through this is truly heartbreaking. I imagine it’s similar to what Cassie has gone through.

untitledI was so sad to hear about the passing of ESPN announcer Stuart Scott from his cancer. He summed up much of my thoughts on this cold, snowy, and exhausted night:

“You beat cancer by how you live, why you live, and in the manner in which you live.”

And so I live. I try my best to tell my story,  to help, to create, to show up, to ski, to care, and to get myself exhausted in the process… exhaustion as proof of living. Of all the words Mr. Scott has said in his life, these might very well be the most lasting.

Booyah.

 

Advertisements
Posted in: Cancer