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.

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3 responses to “To Know Cancer. To Feel Cancer.

  1. Hi Scott, thanks again for writing and for being so open and honest. I can’t say I know what you’re going through, but for some reason I feel like I have a small inkling of the emotional roller coaster ride with regards to the vague feelings of security being taken away, and being at the mercy of the medical office’s instructions (or lack thereof). I don’t want to insult you either, so I bite my tongue when I want to ask inappropriate questions – because I do not know you, even if it feels like you are talking to me when I read these entries in the privacy of my home, on my computer. So I’ll just commit to typing something along the lines of, “we are here, we are listening, and we are glad you keep writing.” 🙂

    • Thanks so much for the good words and support. Feel free to ask any questions, I really don’t mind. The cancer experience can be so confusing for those who have never been through it, which is why I try to write about it, in part, for the sake of others.

  2. Thank you for sharing. Your writing is so honest and transparent. Please know we are keeping you in our prayers. I’m sorry seems so shallow.

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