Post-Surgery

I tried to write a post-surgery update in the hospital, enabled by the comfortable drugs they give you in their care, but even the relief I felt with their “good stuff” couldn’t combat the overall lack of drive I continue to experience even now. With that said, I think I can squeeze something out.

Let’s first address the big question. Yes, I still have cancer. What this means for the future, I still don’t know, but the surgeons couldn’t get it all once again. So there is that.

I woke up from the surgery in the pretty expected state of mild confusion, then a slow creeping realization of where I was, what was happening, and a huge “Goddamn get this tube out of my throat” awareness. I was intubated in the ICU as I always am, but something was different. I could tell. I was more aware of myself and my surroundings than I have been after previous surgeries. I was almost TOO aware. For when they put in the first chemo infusion, the pain that filled my abdomen was almost unbearable. I was being overfilled, so it felt, and with each liter that poured into my body, the pain only grew. Suddenly, I was having trouble breathing. It was the kind of pain that forces you to take quick short breaths, as anything deeper would only increase the pain I was feeling. I mildly remember the nurses sternly telling me I needed to take deep breaths, and I remember the anger I felt in wanting to punch them in the face for having no idea what I was experiencing. I would have loved to have told them as such, but the tube in my throat left me incommunicative. It’s the worst feeling in the world, to be in such pain and unable to express that to anyone.

The blurring nature of the drugs leaves the details a little muddled, but at some point I was able to communicate that the drugs they gave me to kill the pain, did NOT work. I don’t know if that was after they removed the tube down my throat or, somehow, before. Either way, when I relayed my pain, they hit me with a shot of Dilauded and suddenly the world was a beautiful place again. The relief was instant and I was no longer scared.

From that point on, we eliminated the ineffectual first drug and switched to Dilauded. I still experienced some discomfort with the next four infusions and drains, but it was nothing unbearable anymore. All praise Dilauded.

For whatever reason, the tube down my throat was removed after the first day, which is a new record for me. One of the most immediate signs of my physical degeneration from surgery is my zeroed out lung capacity, which must be compensated for through intubation in the ICU. Usually I was intubated for 3 hellish days, but this time it was out after one. I was so much more alert and my lung capacity felt as strong as it was when I entered surgery, which is one of the greatest silver linings of this experience so far.

Each day I was alert meant another day I avoided the nightmares of Morphine I used to experience. Now it was only the normal pains and frustrations of all the tubes in my body,  unempathetic or socially awkward nurses, and the waves of emotional breakdowns that would leave me in tears as I sat through such uncomfortable days, just psychologically and emotionally pushing against the torture of time. I remember nights where I woke up and immediately looked at the clock, to find it had only passed ten minutes. At some point, however, the ten minutes turned to 30, then to full hours, until I was getting 2 to 3 complete hours of sleep a night.

I was moved out of the ICU on a Saturday, I think, and up to a standard room, where I could then begin to walk the hallways and have more and more tubes removed from my body.

Overall, the experience was pretty similar to everything I had felt in the past, and my recovery was going so well that I got out in record time, leaving the hospital Saturday morning and getting home to rest in bed.

And that’s where the hopeful recovery seems to have stopped. I don’t know what the surgeons did differently this time, if anything, but the pain in my abdomen leads me to believe they were much more aggressive in their approach this time. I’m having incredible pain in eating, drinking, or managing anything that causes gas. Just having a relatively full bladder leaves me writhing in waves of pain that come and go. The mornings are the worst. Not having taken a pill since midnight, the ravages of the surgery are felt most distinctly as soon as I wake. I struggle to sit up straight and make it the few feet to the bathroom to brush my teeth just so I can take my first pill for the day. And mind you, the pain pills you get at home are NOTHING compared to what you get at the hospital. I was so deluded by the relief I felt at the hospital that I imagined going out for a run the first week out, but those delusions were quickly disappeared the first morning I woke up on regular pain meds.

I’m a week out and I still can’t sit up straight. Trips to the bathroom can last 30 to 45 minutes as I struggle against my abdominal muscles and the pain that fills my abdomen. I don’t even have the strength to blow my nose when I wake up in the morning, as just trying sends pointed pains throughout my stomach, and the strength to engage my atrophied muscles is just gone.

And yet, I need to eat. The obvious muscular atrophy becomes even more obvious with each passing day, as t-shirts hang off my bony shoulders, legs and arms are visibly skinny, and my hunched over back has me looking like an old man with scoliosis. But eating causes such incredible pain that I can’t get in the calories or nutrition I need to keep getting better more rapidly. No doubt I AM getting better, but it’s a little too slow for my ambitious nature. Not to mention, there’s only so much yogurt one can eat before it gets a little too repetitive.

But you know what, that’s enough cathartic whining. Today I pushed myself to attend the Winter Run Group I started and that other runners and friends of mine have continued to host in my absence. I took a pill, convinced Laura to drive me to the run, and enjoyed the morning seeing friends I haven’t in awhile. I also pushed myself to walk 2 miles, which seems like a joke, but the previous descriptions hopefully convey otherwise. It wasn’t easy and I actually felt muscular strain and an old focus I often resort to at the end miles of a long run. I had to limit my conversation and just keep moving forward to make it back inside and finally get off my feet. I don’t know if I’m expecting any recovery value from trying to be active, but the psychological aspect of getting back out there definitely felt good.

That’s all in the now though, and the greatest open question for me is what is to come of the future. I have great motivations to start working again, to live free of surgery long enough to get off assistance and back to a stable income, and to ultimately just live closer to my old life again. The details of my cancer, however, are a bit elusive right now. My surgeon is on vacation, so I actually haven’t talked to him since before the operation…at least, I don’t think. I may very well have seen him in the ICU, but my mind hasn’t retained that memory. The story I have of the operation is only broken pieces handed to me by Laura and my family.

I remember something about the surgery went great, even thought it was another 15 hour ordeal, but the cancer remains. I don’t know how much more cancer they removed and where it still remains, but they did remove more. Even more encouragingly, the spots where cancer once resided, and they removed, now look like cancer was never there in the first place. So there was no regrowth or extensive damage.

But the cancer is still there, and I think that means I won’t be going back on systemic chemotherapy treatments. It’s odd to feel relief at this possibility. Going back on systemic chemo meant that they removed all the cancer and they were just making sure no stragglers were left behind, which would have been great, except it would have meant I would have gone back on chemo….and that’s no fun. It’s a weird dynamic to reconcile, to know I won’t be back on chemo, but that’s only because I still have cancer. If that doesn’t convey just how awful that necessary treatment feels, than I don’t know what will.

I also remember talk about a future surgery timeline that may extend 2 to 3 years. One of my realistic best case scenarios going into this surgery was being able to live with this cancer for a number of years without surgery, without the necessary interruption that halts everything I have built in the moment and which prevents me from building so much more on a long term basis. I want nothing more than to just get back to my normal life of expected income and routine. There is a lot of privilege in having a self-directed life, even one enabled by cancer treatments, but that privilege feels less comfortable when you have a child to take care of.

There was also talk of “involution”, which I’m kind of over hearing. The oncologist often puts a positive spin on my situation and talks about other patients experiencing involution, where the body’s immune system goes into overdrive and takes care of the remaining tumors on it’s own. That’s a nice potential, but I’ve been hearing this since the first surgery, with no evidence of involution, not to mention were talking about cancer and the law of averages. Involution is rare. Very rare. It’s probably not even worth mentioning unless you’ve been taught to coach positivity. If the body involutes, then we’ll find out on scans, otherwise, let’s just not worry about it. That’s how I’d like to handle it anyways, because the potential of going back on chemo is probably far greater than the potential for involution.

At this point, I don’t know what lies ahead. I’ll only know that when my oncologist returns from vacation and I have my first follow up. It’s then I’ll be able to ask how much progression they made during the operation, how many years I have of surgery free living and if I have the agency to roll the dice again and wait it out. I don’t know, just the consideration of rolling the dice scares me a little, because it sounds like an unconscious tiring of surgery, of not wanting to continue through this insanely difficult ordeal. Maybe I don’t wanna do this again. Maybe I just want to let the process carry itself out. Maybe I’m losing perspective. I don’t know, but this has never been and never will be easy.

For now, I’m just laying low, trying to wait out the pain and discomfort, cutting back on pills to avoid becoming dependent, and anticipating the follow up with my oncologist so I can get a better picture of what happened and what is going to happen. Unfortunately, there is little else I CAN do.

Hold The Door Open.

I’m not the type of person that wants to make friends through cancer. I didn’t feel compelled to bond with others in the experience, join support groups, or fly the flag. For reasons I’ve touched on more throughly in other posts, I just didn’t want the identity of cancer. I felt no compulsion to fly a flag handed to me instead of one I picked up. I’m just not the type of person who wants to make friends through cancer, in part because I sure as hell don’t want to lose friends to cancer all the same. Sentiment is nice, if hardly practical, so when I made friends with Denver Hutt, it had nothing to do with shrugging my shoulders against the circumstance and just saying, “Oh well, I guess I’ll tolerate this fellow patient.”

I had met Denver completely outside of cancer in both our lives. My employment situation had taken a sudden turn for the worse and as I scrambled to find work while my savings disappeared to child support payments, we were connected by the small town in a big city dynamic that is Indianapolis. The Executive Director of The Speakeasy and by some unknown social media connection, emails were exchanged and she promised to put out requests into her network. Then just a few days later our paths crossed at a coffee shop where I often worked in the morning and which sat across the street from her house. Quick, casual and official introductions were made, but we went about our ways, mine leading into my diagnosis just a few weeks later.

I took a photo of the chemotherapy clinic I would get to know with too much familiarity, posted it on social media to a growing list of friends deeply concerned about my well being, when a text suddenly came through.

“Psssst…I’m next door.”

My mind instantly went to worst case scenarios as it tends to do. She has cancer? Has she had it? Did she just get it?

I pressed her with questions and she explained they weren’t sure what was going on, but it might be pneumonia, a case so bad she had cracked multiple ribs in more strenuous coughing fits. They were running more tests and although they didn’t know what was going on, that is hardly a sign of encouragement in these sorts of situations. She asked for privacy with the information and I agreed, because just like that were friends that can only be formed in very certain terms of crisis and desperation.

The tests, of course, ultimately shows cancer as the culprit, but right off the bat her situation was unique and rife with problems. The dynamics of her case were so complex and varied that she was pointed directly to the head oncologists in their respective fields. She was the anomaly of anomalies. But I feared that wasn’t the hopeful kind of anomaly to be. Denver would have disagreed, vehemently, to my face, as she sometimes did. I liked her fire even though I got burned a couple times.

We made time to catch up on our health situations (me pausing design work and Denver getting discussion in between the rapid fire meetings she was always hosting at the coffee shops where I would work) as our non-cancer lives rarely intersected. She visited me in the hospital after my first surgery, bringing a box of Operation game brand band-aids, which sits in my “cancer box” with everything else. We continued to meet on schedule if time passed too long without a chance encounter, and our friendship expanded into territories most rarely get.

I realize now that although I’m not the type of person who wants to make friends through cancer, it’s because even people who have cancer can hardly relate. There is an obvious age discrepancy between a relative baby such as myself, in the cancer community, and the rest of the cancer demographic. I’m 39, but I’m treated like I’m 14. A different sort of pity and “what happened” comprises the tone in all the questioning. Denver was only 28 when she died.

A large part of our friendship solidified not because we had cancer, but because we now had to make serious choices in our lives afforded only to the young, and we essentially needed to make them immediately. I was relieved to hear her mirror my thoughts in our conversations, to know that the private issues I was considering were more universal than personal, but to us, they were also tainted with the very real threat of abbreviated mortality. We couldn’t talk about love in the same way others our age do. Our considerations of kids could only carry much more significant risk and reward. Our maneuvering for employment and stability, against the threatened need to live all out, felt almost sinister.

And somehow, I was the more fortunate one in our circumstance. Despite our impossibly unique connection and similarities, the 10 years I experienced beyond hers helped answer some questions more definitively. At the very least, I created an amazing child and will not miss out on a significant portion of that experience, come what may.

Denver had a greater fire in her than me. She was more blunt than I had ever experienced before, and I get the feeling this was not dictated by the immediacy of cancer. I respected that, and although my care for one of her abrupt health changes had me choosing words unwisely, which afforded me something of a period of shunning, I took it as a sign of our genuine friendship.

More than all the discussions we shared, the questions we bounced back and forth, the life considerations we tried to hash out together, the greatest part of our friendship was the comfort I had in knowing that I wasn’t going this alone. I know I’ll be ok to go it alone. And I know I have so many in my life who are making sure I don’t go it alone, but there was something different about the friendship I had with Denver, that it wasn’t just the unique perspective our relative youth afforded us in this crisis, but the comfort I had knowing that when things got sad, when the motivation waned, when the fire died down, that she had experienced the same and if needed, I could always call to meet up at a coffee shop, which although consistently ended in tears for her, I knew was important. I knew it was some way of us saying, I’m still here too.

Laura walked over to my bedside in the ICU and said through choked words, “Is it ok to give you bad news in the hospital?”, her way of saying that something was terribly wrong and I needed to know, no matter how unideal the situation might be.

“Denver died last night.”

Maybe I was fortunate to be emotionally clouded by so many drugs, distracted by having to manage my own pain, or even hearing a bit about “the writing on the wall” from a friend and even Denver herself just a week prior. I didn’t have much of a reaction. I figured this day would come. I gathered some more of the specifics and let the information pass through me, filing it for consideration later.

I didn’t really know what was to come of her passing. She was pretty adamant that wasn’t going to happen, and I wasn’t about to discount her drive to make it so. I guess she wore off on me in that way, in that was the one worst-case scenario my mind didn’t jump to. “What would it be like without Denver going through this too?”

It’s lonely.

That’s all I can say. I won’t have an impossibly organic connection to someone like her again and the opportunities to hear my life and death considerations reverberate back to me from her own consciousness is gone. That comforting, shared moment has come and gone and in a way, I face this with one less person to consider the experience.

It’s going to be lonely without Denver around, knowing our chance coffee shop encounters are of the past, but as with all our friends who have had their lightswitch of consciousness abruptly flipped, we know it’s the remembrance of their spirit with which we continue forward, and the last thing Denver would ever accept from any of us is dejected resignation. She would demand we do something good and probably unreservedly scold us to our faces if we didn’t comply.

She ended her last blog post with the most simple and practical of advice that is only right to share again. I get the feeling she had the sense this might be her final parting post, which makes the advice that much more pertinent.

“I will ask that you smile at strangers more this week. Be kind simply because you are a kind person. Judge a little less. Hold the door open.”

I know first hand she practiced what she preached, in part because she was on the receiving end of some pretty selfish cruelty when her coughing fits were met with uncaring hostility from a public with no idea what she was experiencing. I loved her idea to create a button to wear that said, “Don’t worry, it’s not contagious, it’s cancer,” but I also know she was not one to pick up the identity flag either. She wanted to be acknowledged only for her acts as an individual, and so for all those that knew her, do consider being kind, judging a little less, and for goodness sake…HOLD THE DOOR OPEN!

It’s gonna be lonely without you Denver.

This is the New Year

I stopped marking New Year’s Day as a life reset, an arbitrary time line to think back on the past year and make plans for the future. As a person who seems to always be scheming and planning for the future, while looking to the past for mistakes and successes, I never felt the drive to make resolutions or put any degree of importance in planning my life in a haphazard last second fashion dictated by cultural pressure to do so. The experiences and lessons of my life are on a continuous timeline, a trajectory that is rarely broken by moments that demand resets or slates wiped clean.

But I had never felt the, quite literal, physical reset that takes place during my treatment surgeries. I had never had my slate wiped so clean it was as if it had never been written on in the first place. These surgeries have now come in such succession with a similar erasing effect to my life, that it actually does feel like a reset, and it gives me that odd perspective of putting all the time between them in perspective, to think back on and take perspective from, to look ahead and figure out how I’m going to write on the slate from day one. In effect, these surgeries have become my New Year’s Day.

Tonight, then, is something of my personal New Year’s Eve, as I admit myself into the hospital at 7am tomorrow morning to begin pre-surgery preparations that will officially begin Tuesday morning. And when that process is all said and done, I’ll wake up into that nightmarish world of Morphine, disorientation, a body destroyed and weakening, pain and misery…and start into something of a new life again. Literally, I’ll be starting over.

But first, I have almost a year and a half to reflect upon, which I’ve been trying to do these past few days, surprised at just how much has happened in this latest time between surgeries. So much has happened, and so significantly, that my perception of the past year has become muddied, and I regret almost forgetting or not appreciating each experience as it unfolded into the next.

There was finding myself on the cover of Runner’s World just a month after my last operation. There was the Cape Cod Ragnar with my teammates on Strong Hearts Vegan Power. There was the Ultra Benefit Run for Family Reach. There was my training towards a competitive half that hit my goal of going 1:20. There was the sudden pacing role to 3:05 in the Monumental Marathon. And those are just a small handful of the running accomplishments I managed to build during this period. This doesn’t count all the friendships created, the charity money raised, the adventures I’ve had with Laura, the exponentially growing relationship with my son, and the many projects I’ve fostered and begun leading into this next pseudo-new year. To dwell on each would take more time that I have to devote and probably lead to a continuous memory stream I’ve inadvertently suppressed. Suffice to say, I’m thoroughly satisfied with what I’ve made with my time this past year and a half.

The continuous thread of these experiences, however, is running. And of everything I’ve devoted my efforts to this past year, getting stronger from surgery and measuring that progression through my running fitness has been my proudest accomplishment. It’s worth detailing to me.

I explicitly remember the first time Laura and I went to our local trail system after surgery, so she could continue her training towards the Monumental Half Marathon and I could spend some needed time in the woods, if only  just walking the trails. Of course, I ended up testing my body against the terrain and completed a tenuous jog / walk effort that felt so wonderful and left me wanting more.

From there I gently increased efforts when I felt the ability to do so, sometimes setting the incline high on the treadmill and walking until my lungs threatened to give out. It was as encouraging as it was embarrassing, but I knew it was a necessity to build myself back up.

Until finally I found my way back outdoors, when the weather had turned towards winter, and I could attempt incredibly slow and weakened runs around a 3 mile loop of our downtown canal. Each day I started with a weakness in my body that felt like I had just completed a 20 mile hard effort, but I was just beginning. I struggled to lift my legs and my torso hung over my abdomen in a slump. I shuffled through a 9:30 to 10:00 minute pace, while still feeling my heart rate push itself into rapid beating that demanded I start walking to calm back down. I could complete 3 miles with a handful of relatively demoralizing walk breaks interspersed, almost as inadvertent intervals.

Over the next month though, I continued the consistency and slowly, very slowly, I could complete the 3 miles without walking, then extended the distance to 5 miles. Even then, I approached 6 miles as if it was a new long run distance, unsure I could complete the distance without sitting down to recover my ability to keep going back to the car. With measured patience though, I pushed at the distance and week after week I could look back and see progression. I could see my strength coming back, my form becoming taller, my paces dropping. 9:30 became 9:00 became 8:00. I was getting somewhere, no matter how relatively frustrating compared to my past.

That’s when I started actually training again, looking for that moment when I could firmly say I had “Flipped the switch” and my body was cooperating with my ambitions. I pushed harder and harder, felt my body getting stronger, touched on moments that felt like my past self, and entered into the Spring as a compromised, but legitimate runner.

That’s when I let loose. Mileage crept back into my base of 10 miles a day, leading into the expected routine of speed workouts and long runs, and I knew I had found the runner I had been since before diagnosis. I knew I was strong and capable again, even if it was all going to come to an end again. But it wasn’t the time to dwell on that reality yet.

That began my ambitions towards the ultra run, that although didn’t go so well, went pretty damn amazing considering. Then came the Runner’s World Half where I hit my 1:20 goal and felt that distinct race environment that feels so much a part of my being. And finally, I found myself leading a handful of runners to Boston Qualifiers in the Monumental Marathon, pulling them into a 3:05 marathon.

As I ran towards this surgery and the opportunities to push my progressions ticked away with each day that neared, I knew I had to just focus on staying strong for the reset that was to come. Of course, there is that part of me that so much wants to see how far I can keep taking this progression, how much faster I can get, how many more new running frontiers I can find…but that’s not my reality. My reality is making the most of each period of time I have between surgeries, and I’m more than satisfied with what I built during this one.

It was amazing to feel my body go from a limp noodle to a strong, swift mechanism capable of finding it’s way into 6:45 / mile 10 milers at conversation pace, to feeling the fear and adrenaline that marks competitive racing, to experience that race distance degeneration when you’ve held your abilities all the way to the finish line with nothing left to spare, to simply finding the ability to lay into a run when you feel the energy demands it.

I know some people might still harbor that suggestive reservation for me, thinking that maybe I should take it easy, or at least back off during these times between surgery. I mean, cancer and the ravages of the operation are enough to endure, right? So why add more adversity and obstacles. I get it, but I don’t agree. I can’t do anything about surgery or cancer. Those are battles to fight for other people, my surgeons and oncologists. I just have to endure those. My battles are what come after, and the only way I know how to fight those battles and make the most of my situation is to run them out, to take the effects of surgery and reverse them to my benefit.

I never lose sight of what is about to happen, and there is a part of each run that knows what is to come and is carried out with the intent to build against the ravages just a little bit more. Because, honestly, tomorrow is when my new year starts, when my body is erased, and this is what is to come.

My muscles will atrophy as I lay in bed for weeks. I’m unable to eat appropriate foods and nutrition not supplied by an IV drip, so I slowly waste away before I can take control of my diet again. My abdominal muscles are literally cut in half and it’s unreal they manage to fuse themselves back together. The chemotherapy destroys every cell, good and bad, throughout my body. The processes of my organs must adjust and readapt as they are shut down, or completely removed, necessitating all kinds of unpleasantness. And there are the ravages of the medicines and treatments themselves. My tastebuds become hypersensitive and the only palatable foods are bland and tasteless. My eyesight periodically goes blurry and doubles over on itself for over a week. The morphine creates hallucinations and draws me into a world that flips between only nightmares while I sleep into a reality that isn’t much different then back again, over and over until I’ve lost sense of time and space. My sleep patterns completely flip so I’m up all night and sleep during the day until they slowly readjust. The pain pills only work for so long and I count down the minutes until I can take another, seeking just enough relief to not become addicted. Sitting up from a lying position in the morning to just walk 10 feet for yogurt and then back is a significant effort that leaves me motionless for most of the morning. And..

Well…on and on.

I’m a shell of my former self…but then there is running. There is something to get back to. There is the knowledge of progression, of stressing the body, of understanding and FEELING strength develop. There are markers through pacing and distance that are undeniable measures of progress. But it’s not just about that reversal of what surgery has done to me, but actually enjoying the experience of using my body and being in the world in a way I can relate, in a way I understand, in a way that defines my existence and happiness. The only difference with running post-diagnosis and pre-diagnosis is the added benefit to overcoming surgery. In the end, I still do it (against some people’s wishes) because I deeply enjoy it.

This is why the majority of the experiences that defined this last period between surgeries consisted primarily of running. There is little else to say about that.

I can only say my New Year starts the moment I wake up from surgery, in a state that is hard to imagine being worse than it is. The benefit, of course, is that it can only get better. I’ll be destroyed, undoubtedly, but I also know, and proved this last year and a half, that we can get strong again. If I have any resolution for this New Year…it’s that.

See you on the roads and trails next Spring.

No Words. Only Actions.

This post will probably fail in every way, because I’m struggling to find the right words to express the gratitude I hold for my family of friends, who came through in the best, most necessary, most unexpected way this morning.

I dropped Laura off at work – right after I was lamenting about the continued financial difficulty I’m navigating in the face of cancer treatments, not making rent each month and having to swallow my pride and borrow money from her, harboring the embarrassment and frustration of not being able to provide for my son’s needs, or even contribute to something as simple as going to the movies or buying dinner – and as she was getting out of the car she barely veiled her mischevious excitement through a stifled smile when she quickly blurted out,

“Check your email between 9 and 10 today!”

Completely unsure what that meant, I went about my morning as usual, knocking out a 10 mile run, shoving breakfast in my mouth on the way to the coffee shop, then setting up and getting to work in an attempt to tie up all loose ends before surgery renders me useless on Tuesday.

Then all of a sudden an email notification popped up, something about Paypal.

I opened it to see a donation made directly to me, an amount of which immediately lifted an emotional weight that has been so pressing, so relentless, so frightening, that it felt physical. I stared at the donation amount for a bit, trying to process what this meant for all my current financial worries and then after experiencing this incredible weight lifting from my shoulders, I felt…embarrassed, humbled, inadequate, and worried.

But in the best way possible.

I felt all these emotions, because I have been quietly struggling through unavoidable financial restrictions for many months now, of which countless cancer patients must experience, because no matter how physically well we may be doing, the financial burden and restrictions to work (whether to stay eligible for aid or other reasons) are crippling. I’ve heard stories where upper middle class families turned into welfare recipients over night. I’ve heard stories of individuals denied treatment at the check-in counter when payments couldn’t be processed. I’ve heard so many difficult stories of previous security and comfort wiped away in the face of cancer’s financial burdens. And although I’ve been staying on top of my burdens, they have periodically slipped again and again as I wait for each surgery to allow me to work without restriction as I have in the past.

But I don’t mean to dwell on a “woe is me” story.

I just want to convey how incredibly important this donation is to my emotional stability right now, and all those feelings I expressed above, the embarrassment, humility, and worry, are not an extension of ingratitude, but rather a different kind of concern, of being unable to reciprocate this unbelievable gesture. I know I won’t be able to convey how appreciative I am that these individuals came together and compromised their own financial state to support mine. I do NOT take that lightly.

To give credit where credit is due, two good friends of mine from the Strong Hearts Vegan Power running team, of which I am a part, facilitated this benefit on my behalf without my knowledge. They put out a call to the team and solicited donations to help support me as an individual, and I continue to be without words for this effort.

For those that don’t know our story, the SHVP team formed around a Ragnar Relay a couple years ago, during which we realized we had developed an incredible community and tool of vegan advocacy. From there the community of friends grew and grew and…well…continues to grow. Our team, turned community, turned solid family of friends now probably numbers 50+. Through these friendships we have supported our individual endeavors outside the team and I’ve been both floored by the generosity shown to others and inspired to become a more generous and empathetic person myself, through the example of their efforts as a team and individuals. Without reservation I can say I’ve never been part of a better group of individuals than SHVP.

But I expect nothing from them aside from reciprocated friendship and amusing Facebook banter. So as this donation now rests in my hands, I have the responsibility to use it as effectively as possible to manage my life while this next cancer treatment renders me relatively useless, but, even more so, to also continue this manner of reciprocation back to them and to others to my complete ability. This is the best burden I can ever imagine shouldering.

I want so say to them, again and again (and am doing so here), that I am so inexpressibly grateful for this donation, that you all are amazing individuals and as a team we’re like an actual Voltron of veganism, destroying stereotypes, exploitation, and apathy wherever we may find them. And when I despair of the world, and find little solace in any action I take, I can look to our example and know that whatever horridness the world continues to create, it’s not of our doing. This donation is a small example of the power we both contain and share.

And to reiterate, it would be an offense to simply express my gratitude to you all and leave it at that. This is both irresponsible and insulting to your action. What will only matter is that I use this donation as responsibly as possible and then reproduce this action to the best of my abilities going forward, so I’ll promise that to you now, that whatever personal compromise or sacrifice you made to support me, I’ll find a way to reciprocate.

I want you to know, all of you, what a donation like this does for me and does for others. While I’m unable to not only work, but to simply breathe on my own, I can’t create the funds that pay the mortgage, pay the utilities, buy food, etc. These aren’t the extravagances and excesses of our lives, but the basic necessities of survival. Without these, what does one have? How does one survive? And financial support will allow me to cover all these for a few months, letting my body heal, adapting to the unforeseen physical complications of such an incredibly extensive surgery that destroys my body, robs me of any creative inspiration or even the drive to complete the most basic tasks. A donation like this allows me to focus on recovery, to find the time to build my body back up, to get stronger and stronger in order to work again, to be creatively inspired, to find my way out of dark emotional places and back to positivity. This donation will also allow me to retain some sense of dignity in providing for my son, who is currently in need of dental work, of which I have struggled to provide. This donation will allow me to help in that regard, and that benefit to my emotional state is immeasurable. This donation will also help me dig myself out of some unavoidable holes of debt I incurred this past year, setting me up for more stability past surgery.

Out of appropriate discretion, I will spare you of financial details, but suffice to say this donation is less about the number and more about the emotional comfort you have afforded me by helping me pay for both the necessities of living and the integrity and responsibility I try to maintain for my son. There are no expressions of gratitude worthy enough to reciprocate.

As I navigate these last few days before this third surgery, I’ll be thinking how best to reciprocate to you all in action, how to equalize your gesture in kind and towards others. For now, I can promise you that this enables me to more quickly become physically able, physically strong, and back to running with you in the future. And when that happens, I’ll express all this again face to face.

With fingers crossed, I’ll enter this surgery with the measured hope that when I wake up, I’ll be that much further away from more treatment and that much closer to the financial stability of self-reliant work, knowing that in the interim, you have taken care of me and my needs until then.

“Thank you” sounds like an insult to the gratitude I feel towards you.

Come What May

Ok…..deep breath.

I drove my son and I to the appointment with my oncologist this morning, navigating roads through a windshield smeared with a rain so cold it verged on freezing into snow. The wind shook the car, turned pedestrian umbrellas into catchers rather than deflectors, and seemingly tried to prevent us from actually entering the hospital once we parked and walked, leaning forward just to stay upright, into the entrance doors. I would like to say that was the most difficult part of our day, but the warmth of the waiting room interior was a deceptive comfort to the information I would soon be given.

August and I sat relatively silent in the exam room, when the crack of the door internally jolted me, and my smiling oncologist walked in. My startling conveyed more about the suppressed tension I held in my body than I was acknowledging. We shook hands, moved through our typical friendly small talk, and then quickly got down to business.

I relayed the pains I was feeling again and said, somewhat cautiously,

“No disrespect to your practice, but when I looked online, I’m pretty confident I have an enlarged spleen by the symptoms I’m feeling.”

He countered immediately,

“Well you definitely DON’T have an enlarged spleen…”

and then went on to explain the results of the MRI more in depth, then the secondary tests we did for amylase and some other measurement that escapes me right now. Everything looked great. He reiterated that tumor growth was still relatively stable, and any growth they could detect was negligible.

But there was that significant, seemingly increasing, pain that prevents me from eating fully, comfortably, or even move throughout the day with ease. Something, I knew, was more than just difficult. Something was wrong.

In hindsight, I got the sense he knew what was going on prior to our discussion, but wanted more confirmation before he gave a specific diagnosis, rightfully, scientifically, so. He pulled out a diagram of a stomach, liver, gallbladder, and then drew in the spleen, areas of tumor growth difficulty, some arteries, and began explaining.

To be honest, I won’t try to recreate the exact processes going on in my body, but his speculation is that I had formed a number of gallstones in my gall bladder, that were causing significant discomfort and potential blockages around my stomach. He then considered the potential of the gallstones working in concert with tumor pressure near the spleen, around the stomach, and finally discussed the systemic workings of the pancreas and a potential problem there related to blood flow, compressed arteries and some how that relating to the gallstones. Honestly…I don’t know…the inner workings of the body are complex.

August messed around with Minecraft on his iPad and listened in from time to time while the oncologist started talking treatment specifics.

He wanted to give me an ultrasound to look into the idea of gallstones as the primary consideration for my pain, which he referenced on the diagram he showed me, drawing all sorts of relationships through lines and circles and notes. In the end, it looked like he had drawn out a play for the last push to win the Super Bowl.

“Ok, we’ll send the spleen around right, drop back into the gallstones, sever off the pancreas line, then throw a hail mary into the liver, and…touchdown!”

Well, not really, but you know what I’m saying.

What he really said was, “I need to make a compromise with you.”

See, my oncologist is leaving the country for a conference and vacation with his family. This is part of the reason they pushed back my surgery another couple of months, which although sounds kinda crazy and insensitive, the plus side is that they were able to push my surgery back precisely because I was doing so well…until I wasn’t. But up until now, I had no cause for immediate concern, with no tumor growth, no life-threatening difficulties, no nothing really.

I told him I understood his need to go on vacation.

“Look, I completely understand you actually have a life outside of your work and you need to do what you need for your family. I hold no frustration against you for that. And if all I had to do was deal with the pain until the surgery, I would, but my concern is that my difficulty in eating is going to lead to decreased weight and strength, which I know isn’t good for the surgery or recovery.”

He agreed, completely. He said I was right to have these concerns and this is the reason he wants to compromise for me.

He said he is going to push my surgery date forward, and he will do the surgery, but he won’t be there for my recovery. One of the other doctors that works with him and performs the same extensive HIPEC surgery is going to assist the operation, but he won’t be there for the recovery. I saw no reason for concern, but he assured me that he trusts the other doctors.

The bigger problem he said, is the surgery itself. HIPEC is so extensive and can involve so many complications that many doctors aren’t doing it anymore. There is even difficulty in convincing new doctors to enter into the procedure, which I’m aware of as the number of oncologists that will actually perform the operation are problematically small. I’m beyond fortunate that my oncologist is here, in my state, in my city. The only other reputable oncologists for the HIPEC operation of which I’m aware are in Pittsburgh and the UK. He even let on that he isn’t taking anymore patients for this surgery, because of it’s intensive, difficult nature.

So yeah, there is cause for concern in relation to the recovery. He conveyed a story about a patient who had the HIPEC operation, successfully, and the oncologist had to leave, but then an infection or similar problem arose and the patient died..or well, as he put it, “It didn’t end well”…while he was away, which he feels terrible about.

So that’s the compromise…the surgery will be performed by my oncologist, but I’ll be in the hands of his trusted colleagues for the recovery. Considering what I was about to find out…it’s not really a compromise at all. I’ll take it.

We left into the exam room and walked to another small room for the ultrasound. Spoiler alert, I’m not pregnant! August watched the computer monitor as he rubbed the cold jelly around my abdomen, looking into various organs, measuring tumors, and trying to get a definitive sense of what was going on. He was absolutely great with August, having him come to the screen and explaining the entire process, answering all of his 9 year old questions and making jokes all the same. And August had me beaming the proud dad with his insightful questions and understanding. At one point the doctor said in surprise,

“Wow. You understand this better than my residents!”

Very quickly in the procedure his concerns were confirmed. The gallstones were readily visible in the ultrasound, of which couldn’t be detected in the MRI, and this led to a number of other concerns, the worst being pancreatitis. Again, I’m not going to labor into the details of the relation between the two, but I could tell the concern was real and relatively immediate.

Then it was Auggie’s turn for an ultra sound…no, really. He had August get up on the table, rolled the device around his stomach, and took a handful of screenshots to print out and give as one of the most unique souvenirs I can imagine. I was so grateful he engaged with August in this way, relieving any unexpressed fears he might be harboring about the whole situation, or at least distracting him from tedious adult medical practice boredom.

We began talking about what he saw, namely the problem of pancreatitis, which I could tell escalated the response to my pains. I still don’t know how the process plays out, but my pains are increasing warning signs towards pancreatitis, which is life threatening. From what I could gather, there is no option to wait two months for surgery, which is why we’ve scheduled the surgery for January 12th, two weeks from today.

It’s hard to say I’m relieved about that, but in a way, it’s good to know we’ll get this inevitable process on and I can move to the next period of life where I might be getting away from this yet again….might.

I don’t know, I’ve long stopped expecting a plan. I mean, you’re moving along with cancer like everything is just a mental exercise towards the physical surgery, and then BAM, you’re being told you’re actually residing in a place of high risk for a life threatening sickness that can pounce quite quickly. Who knew? Obviously, I didn’t.

I pryed him with a few more questions about pancreatitis specifically. Can it come on suddenly? I mean, does it just take me out right away? What can I do to not aggravate the situation? And so on.

He didn’t belabor the point, but I could tell through his expression and seriousness that it can be bad, like real bad, like real quick. I mean, from my web research, I don’t think you just drop dead walking to the mailbox, but it’s nothing you wanna stick around and wait out either.

Which is why I found it somewhat amusing that the scheduler asked me, “Is January 12th ok?” As if I had a choice. I looked pensively and said, “Let me think. January 12th? Well..I mean…it’s not like I have a choice I think. Of course, I’m just thinking about who I might need to tell. But yeah, January 12th. That’s fine.”

August and I took our ultrasound photos, gathered our coats, and walked out of the office, into the hallway, and back into the biting, cold rain and wind. And I walked back into an entirely new consideration for my time ahead, of which I can’t even really imagine anymore…again.

Oh…and I forgot. Chemo. Shit. Did I forget or am trying not to remember?

The best case scenario for surgery will most likely require post-operative chemotherapy, as in systemic chemo, as in back to that horrendous life I had to live for a year after my first surgery, with the side effects that completely ruined me.

The best case scenario involves the doctor removing my gall bladder (a guarantee this time), a possible spleenectomy (and temporary colostomy bag…hopefully temporary), and complete removal of all remaining tumors. Considering the tumors are tucked behind my spleen, behind my stomach, and in other difficult to reach areas, complete removal isn’t a definitive, it’s just a hope. But if they are removed, that pretty much ensures systemic chemotherapy for a while, which will help eradicate the “stragglers”, or the little cancer cells that can’t be detected, but will inevitably grow back into tumorous masses. My tumors are enough and tough enough right now that systemic cancer can’t do anything to them, while the surgery can, but if we get rid of all them, then systemic chemo steps in to finish the job. That is, somehow, the best case scenario.

And right now I don’t have the energy to consider what that means for my life after surgery. I’m not even imagining now. With two weeks to surgery, I don’t even really have the time. I need to be with August this week, then double up on work focus and get my loose ends tied before going back into the hospital.

And that’s that. This feels familiar, and that feels disconcerting.

And THAT’S cancer. This crazy shifting of comfort levels, of moving through your days as if nothing is happening inside you, even if only because you can’t feel it, until, well, you can feel it. It’s 180’s when everything was moving dead ahead. It’s having no floor beneath you when you thought you were on solid ground.

And then it’s adapting. It’s coming to terms with no degree of routine or expectation, and only THAT being your expectation. With that realization comes a certain readiness, a cat in pounce mode, an always being on your toes sort of defensive posture, where you steel yourself against what seems to be an inevitable attack on your body, your psyche, your emotional stability, and ultimately your life. So you prepare for anything to happen, and when it eventually does, you adapt. You readjust and keep moving forward, as much as is in your control, to keep your emotional life together. To keep your financial life together. And then to keep your physical life together. Those seem to be the only simplistic battles worth fighting anymore. We tend to whittle away the excess, the petty problems, the extraneous considerations, the abstract absurdities of shopping malls, celebrity culture, diet fads, and Facebook arguments, until we are left with the ultimate battle of reward versus risk.

Well, that’s how I tend to navigate the world anyways, in part because I want to, and in part because cancer has compelled me to.

So I’m back here again. Not just entering surgery to manage the cancer, but entering it abruptly to avoid some manner of dying. And yet, here’s the good news, I can still run for the next two weeks. And August is here for one more week, so if you’ll excuse me, I have some more non-cancerous living to get back to. And then, chance and surgical skill willing,  I have more life to get back to living…come what may.

Biology Always Wins

I had committed to writing more creatively again, as I felt I had gotten away from the practice, whether relate to running or cancer. I seemed to have gotten mired in squeezing out blog posts in between jobs, rushed and semi-frantic, while also detailing the physical mundanities of cancer and running rather than the general experience and considerations. I had committed to doing so, and then I felt a pain in my side.

It wasn’t an abrupt pain, but slowly built over the past few weeks, until I had been sufficiently drug back into the physical reality of cancer again, necessitating a great deal of hypothesizing what was going on inside my body, scouring the web for any reliable correlation of symptoms, and probably annoying Laura by thinking out loud about what was happening inside me throughout the day.

It’s hard to pinpoint exactly when the first sign of a more serious issue was felt, but while going through sufficient run training, any little issue in the body is often ignored as it can usually be related to training stresses, disappearing in a day or so. This pain, located on the side of my abdomen and tucked under my rib cage, didn’t go away. It came and went throughout the day, but tended to increase in intensity when it did show itself. I did what I often do with running stresses, I evaluated the trends.

First, it didn’t really hang around in the morning. I could feel it at the beginning of my runs when I took deep inhales, but it subsided by the time the run was over. Then, after eating my daily bowl of oatmeal, I could definitely feel the pain as the food moved through the first portion of my digestive tract. As it passed by the problematic area, the pain would heighten and then slowly disappear, until I tried to eat again later in the day.

Then, as a week or two went by, I noticed the pain becoming more and more pointed, especially after eating in the morning and then lingering towards lunch. I didn’t instantly cry cancer, but I started going through the considerations again. I mean, anytime I feel an aberration in my physical state, I no longer think much but cancer. It’s essentially impossible. And couple the pain with my abdominal area, and what else could it be?

But I was waiting for my MRI results, so there was no point in really evaluating the situation until I heard back. But, of course, I didn’t hear back (as relayed in the previous post). And the pain increased yet again. By this point, I could tell something was definitely out of the ordinary and the degree of pain had reached something of a fight or flight degree, where no matter what hopeful distractions I offered to myself, I felt more and more compelled to seek help.

The patterns continued. I could run in the morning with minimal issue, then as soon as I had breakfast, I was in trouble. The pain had me wincing and clenching my fists. I tried not to bother Laura with my discomfort, but it was too obvious to just let pass without reassurance. Then, as the day wore on and I continued to eat normally, the pain barely subsided, and breathing became more and more difficult right after meals. I would hold my breath until each spasm or shock of pain filled my side, sometimes radiating around my back, and finally surging into my shoulder of all places. Sleeping at night was difficult as I struggled to find a position that didn’t aggravate the discomfort. Couple the restless nights with unpredictable bathroom visits and I was drug back to my days of pre-diagnosis.

Again, I couldn’t help but cry cancer, though after finally getting results from my MRI back, which didn’t show any significant tumor growth, I didn’t know what else could be the case. I had a follow up scheduled with my oncologist so he could physically examine me as we waited for more blood test results to come back, wondering if my digestive enzymes were in crisis and causing the pain.

With a trip to North Carolina for Xmas and a visit with my son scheduled, there was no option to stay home and be close to the emergency room should things get really out of control. Laura and I drove to her parents and went about everything as usual, but that night the little food I ate, despite the deep hunger I should have been feeling, but didn’t, spiked everything to a new level of pain. I went off by myself to ride out the intensity, wondering if I should have stayed home, and figured out contingency plans should I end up in a North Carolina emergency room. After some considerable time, I was able to handle the pain and managed some sense of normalcy within spasms, at which point I took to the internet.

Looking through images of human biology I narrowed the location down the to the spleen, then looking up “spleen pain”, or something like that, I came across a pretty exact description of the pain, an amateur diagnosis solidified by the description of pain radiating into the shoulder. Without an official diagnosis given yet, I’m 95% to 99% sure I have an enlarged spleen.

Essentially, what is happening, is that for a number of reasons I can’t determine at this point, but can be related to cancer processes, my spleen is enlarged, so whenever I eat, any food moving through digestive tract is getting backed up or pushed by and into the spleen, causing significant pain. Obviously, there are many other concerns to this. Does the spleen keep enlarging? Why is it enlarging? What happens if it ruptures? How quickly am I going to lose weight now that I’m barely hungry? When I do eat, which foods cause the least amount of pain and can I get enough calories to remain stable? And on and on.

Further research shows that an enlarged spleen can be caused by cancer spreading or from overworking to fight anti-bodies or expel blood cells. These are all cancer related causes, but there is no way for me to tell what’s going on from just my own assessment. All I can do is be careful with eating, while actually trying to eat as the sensation of being neither hungry or full is quite awkward, and wait for the appointment with my oncologist…then who knows what.

Will he determine I just need to wait it out for 2 months? Will he prescribe an immediate spleenectomy? Are there pills for this?

I don’t know, but I am relieved to be home and waiting out the next xmas day with my son until I can get a plan of action.

But in the meantime, my comfort has been shaken once again, dragging me abruptly back into the world of cancer, where before I was just running along, literally, into my next surgery where I could pretend I’d be so much further away from 180’s like this.

I’m not the normal cancer patient…I keep telling myself. My cancer is rare. It grows abnormally. I’m succeeding in ways other cases have not. I’m thriving in ways others haven’t. So it’s easy to get lulled into this somewhat delusional state that I’m just living with cancer, or just living with the yearly interruption of necessary surgery, instead of walking on eggshells that many patients find themselves doing, wondering when the other shoe is going to drop.

I’ve been there, barely thinking past the next two months, really unsure what to expect no matter how good things are going, and as I’ve expressed before, that’s an emotionally dangerous place to be. It’s a setup for a terrible letdown, where the hopeful expectations lead to an even darker disappointment. I try to continue walking that line, but as run training gets better and better, that precarious hope creeps in without me even realizing it.

Then all of a sudden I feel a pain in my side, and I’m suddenly jerked back into the world of cancer, of not just knowing, but directly feeling the precarious nature of our complex biologies, where things go awry, where things fall apart, where expectations of how we want to operate disappear at each meal.

I remember that I’m never safe. That I’m a different person than I was 3 years ago and I can no longer get comfortable again, no matter how comfortable I feel, that nothing is going to be as it once was. And I’m ok with that, when I remember it. Biology will always win, and it’s probably better that way. The success is in staying humble to our tenuous bodies, to doing our best at every opportunity, knowing forces beyond our control may conspire against us without warning.

So even with surgery 2 months away (again, I hope), the immediacy of my body’s crisis has risen yet again, and I have to duck and move, readjust, and run that course of a fulfilling, strong, and stable life in the face of a cancer that never lets me rest.

But hey, at least I’m running.

To Know Cancer. To Feel Cancer.

Writing has always been something of a catharsis for me, so when cancer hit, I needed to write often, allowing me to formulate my thoughts on everything that was happening. And a lot was happening. But over time, as I adjusted to chemotherapy treatments, surgery, recovery, and all the considerations that come with managing cancer, I started writing about it less. It’s not that it went away or anything…wouldn’t that be nice…but that I simply adjusted, and my life became about living with cancer more than living against it.

As I wrote less about cancer, I felt compelled to write a little more about other subjects, but the motivation to do so often waned as nothing seemed to compare anymore. The importance I once held for so much has been tempered, almost humbled, by the greater consideration of living a valuable life in a potentially shortened timeline. Of course, it’s not that I ever DIDNT try to live a valuable, exciting life, but getting distracted from doing so became less a reality in the face of dying.

There’s something really great about being forced to more directly face one’s mortality, to derive the most from every experience created, but there is the other side of the sword where life’s more basic routines seem so mundane as to be worthless. It’s hard to reconcile the boredom and insults of our forced existence when you know they may all come to an end sooner than you had planned. I find drawn to ignore so much absurd excess and eschew easy comfort for the value of adversity and struggle.

And on one hand I love the idea of drawing the blood from every moment, but I’m also not sure this is an emotionally stable or sustainable way to go through life in our current context. What I do know, is that I benefited from facing cancer by living as fully as possible, no matter how physically compromised I was, and yet, at the same time I craved getting my old life back where my work routine was normalized, income was expected, future plans could be made and built upon. I wanted some sense of a non-cancer life, even if it meant going through those petty grievances and daily boredoms once again.

It even felt like I was getting there, living with cancer more than against it. I felt like I was on the verge of building my life back to where it once was. I had a third surgery scheduled and although I wasn’t looking forward to waking up into a nightmare world of confusion and pain, I was looking past it to more long term hopes and the possibilty of years and years without surgery interrupting my plans.

But then the surgery got delayed two months due to a State insurance change. And although I made the most of those two months, as the next surgery neared, I prepared again…and then it got delayed again, for reasons that have shaken my trust in the consideration of my oncologist’s practice. But I chose to put my head down and just get to the next surgery date and try to focus on what was to come after, that hopeful future, on the trajectory of a cancer-free life. Or at least a cancer-minimized life.

But here I am, writing about cancer again. Because although I had been cruising through the past year and a half feeling not the hint of cancer growth, and even though I had surgery on the schedule to deal with what was left inside of me…it’s back.

I mean, it was never gone, but the constant physical reminder that I had cancer was never an issue. I feel the damage done from a year and a half of chemo. I feel the damage done from two surgeries. But I had never felt cancer. I had never felt the problems that caused me so much confusion almost three years ago, until this past month.

I can’t even say when I started feeling it, but there is a very specific spot in my side that started hurting, primarily when I ate full portions or too quickly. I tried to adjust, but the pain persisted, and over the past two weeks it has gotten worse. The mornings aren’t too bad, but I wake with a mild sensation in my side letting me know that something is going on. Where I initially thought it might be a muscle strain from so much hill training, the sensation didn’t subside, and gets noticeably worse after I eat. After each run in the morning I have my oatmeal and coffee, which skyrockets the pain as the food tries to pass through that area of the intestinal tract. Then I can pretty much count on discomfort throughout the day in various states, always heightened by eating. Similar to what I felt just before diagnosis the first time.

When I go to bed, I now have to find comfortable positions on my side so as to not aggravate the pain, compressing the organs inside of me onto the growth…or whatever it is. I’m reminded again of the incredible discomfort and problems I had sleeping just before diagnosis, when my crowded abdomen gave me no relief.

It’s not as bad as it was the first time…but it’s not NOT bad either.

I can’t help but know this is cancer. A tumor growth? Compressed and compacted cancer fluid?

And in that questioning is another great frustration. I had a pre-op MRI scan two weeks ago, and then received the call that my surgery was delayed. The new pain I was feeling two weeks ago wasn’t a concern as I was going into surgery no matter what, but now I’m faced with 2 more months of…whatever is going on with me, and that’s concerning. The frustration, however, is that I still don’t know what my scans showed. The follow up appointment has been cancelled, and when I call to get the results from my scan, to tell my doctor that I have a significant, concerning pain in my side, I get nothing. I get a voice mailbox and no return calls, even when they are promised, even when I know the employee I’m to talk to is there. And honestly, the excessive workload of the oncologists’s office acknowledged, this is still unacceptable. If this pain is something unrelated to cancer, I still should be told. If no cancer growth is shown on the MRI, I should be told. If only because I’M A PATIENT DEALING WITH THE EMOTIONAL WEIGHT OF FACING MY OWN MORTALITY….I should be told.

This is the root of that shaken trust I had for my oncologist and his office, of which I’m at their complete mercy. To put it bluntly, again, if this is cancer, and I’m going to have to deal with this pain, potentially increasing, for the next two months…I SHOULD BE TOLD.

So I keep calling and build to harassing. The next step might involve going directly to the office, once my dejection of feeling cancer again turns to frustration and resentment.

I’m off track.

I’m writing because cancer is back (never left). Because I can feel it again, and the emotional safety net I had of running and running and running and not worrying about it is gone again. I feel myself being pulled back to the emotional state I had to manage during the first year of treatment, the fears of mortality, the wondering about what might happen the next year, the concrete realization that my cancer isn’t so different from the cancers that have killed my friends with little warning. This isn’t to imply that cancer will take my life in a matter of months…it won’t (right?), but that I’m not ever far away from it so as to be living with it, managing it, instead of fearing it.

I won’t go as far as saying I’m fearing it, if only because I know the options are still there to beat it back again. But there is always the unknowing medical protocols. When do they say, “There is nothing more we can do.” How do they determine, “This isn’t going to help anymore.” At what point do they throw their hands up and explain, “It’s out of our hands.”

I don’t know, and although I’m not there yet, I’ve begun harboring these thoughts again, which I’ve so comfortably kept tucked away as I went about my life, running, training, building, planning.

And that’s the worst part about cancer. You think it’s gone, or at least securely compartmentalized somewhere that you don’t have to worry about it…until it’s not. Until it’s back, directing everything you do, dictating your life once again.

Which is why I’m here writing again, far away from life’s mundanity and petty critiques. But here no less. I’ll spare the greater perspective of being here for now, but to simply say, as much as cancer is here, then so am I. The difference being, that not only do I KNOW cancer is here, now I FEEL it again.

Life goes on, and I’ll stick to the trail I’ve been cutting from day one, letting the doctor’s decide when I’ll finally have to diverge and deal with this head on.

UPDATE: After calling again today, I received a call from my oncologist. The report he gave over the phone sounds similar to past reports, which is good…sort of. There has been very little progression of tumor growth, though some of my markers went up a bit, and I’m still a little anemic (time to get more molasses). He’s confused as to the pain I’m feeling and has scheduled another blood test for tomorrow, then a follow up next week to examine me directly. As of now, I’m no wiser as to this pain, if it’s cancer related or something else, though I can’t imagine what else might be causing this. I’m not encouraged that he couldn’t give me an answer straight away, but I’m not saying it’s a fault of his. Hopefully the in-person examination will give me an idea of what’s going on and I’ll just keep monitoring the progression of pain leading into the surgery if nothing else is to come of it. I’m at least relieved that I talked to my oncologist and have a brief follow up.