A Paused Life

There are 47 days until my third surgery.

I’ve counted them, but I’m not simply counting them down, not only because I’ve got a few things planned for this space of time, but also because I don’t care to dwell on the precarious void of an uncertain future that follows the surgery. I don’t want to consider the near horror of waking up in the ICU after days of unconsciousness, tubes running down my throat, preventing me from expressing the pain and fear I experience, and I don’t want to consider the period of inability and uncertainty that marks anything after October 27th. There is nothing after surgery, if only because nothing is guaranteed.

I don’t know how I’ll respond to the necessary, invasive procedure. I don’t know if my body will remember and recover or suffer trauma and shut down. I’ve also learned not to guess.

It’s an important part of the cancer experience that I wish the recently diagnosed were told right away, to never expect the plan to go as you’re told. I remember how the first surgery was supposed to be a pretty simple affair, where the cancer would be removed and I’d be on my way, only to wake up in a nightmare with a vague explanation of how things were much worse than imagined and soon I’d be on chemotherapy. When the chemotherapy schedule was marked out at 12 treatments, I still easily recall the absolute, total dejection I felt when at the eleventh treatment, it was explained that chemotherapy was just going to be my life into the future, a verbal punch to the stomach. Then in a more hopeful turn of events, the life of endless chemotherapy was suddenly halted with the scheduling of a second surgery to try and get the rest of my cancer out and then get on with my life. Yet, here I sit, 47 days out from the third surgery and feeling that increasing sense of pause, of abbreviated action, of being unable to place my efforts in the short term or the long.

And this is getting really old, because being in a place where you’re unable to act and unable to plan is essentially no place at all. It’s not a place where you can plan for long term stability and it’s not “living as if every day is your last.” It’s neither of those. It’s being on pause, ever shifting between conflicting desires to make the most of the moment, without sacrificing the stability of the future.

Throw the unavoidable burden of financial comfort into the mix and the frustration increases exponentially with each passing month.

For the past two years I felt somewhat invigorated by this challenge to make the most of my life through cancer, to do what is necessary to thrive despite the various challenges, physical and emotional, I might encounter. I adapted to not being able to run like I used to. I adapted to the physical degenerations of chemotherapy. I adapted to the financial stress of not being able to work full-time. I adapted to the emotional frustrations of my past life, now intensified through the immediacy of cancer. But living like this isn’t sustainable. The waxing and waning of frustrations and victories gets tiring and my overall level of emotional stability feels like it’s increasingly slipping towards the negative.

I just don’t want this. I want to be over it, past it, whatever. In the past I’ve stopped myself from imagining what it would be like to have a NEC (No Evidence of Cancer) diagnosis from my oncologist, because I was fully engaged in the moment, able to continue on with a, “Ok, what’s next” sort of approach, but recently I slipped and allowed myself the pleasure. I don’t know, maybe I was actually in a good, hopeful mood. Maybe I had too much coffee. Maybe it’s a subconscious telling of my increasing frustration, pushing these cathartic thoughts to the surface in order to bolster some of the general weakening. I don’t know where it came from, but that idea that imagining that I was past cancer felt good, so good, almost too good. I don’t want to continue dealing with the extended disappointment.

The odd thing is, it’s not even the cancer. The threat of dying or significant discomfort seems such a thing of the past. Despite any compromised ability I have right now, I’ve made peace with that. It’s the forced pause of my life that is really beginning to wear on me.

Because of the need to remain on seriously subsidized health care, I’m not able to work full time. I’m not even really able to work part-time. I manage to get by…barely. But I do, and I’m not saying this for a “poor baby” response, but to just address the reality of my frustration, because this is the increasingly frustrating dynamic to having a life on pause. I can’t work to the extent that I need to, because I need to remain on fully covered health care that will take care of my various cancer needs, namely the surgery that amounts to a quarter of a million dollars each procedure. That is simply crippling and there is no way around it.

But I WANT to work. I WANT to plan for my future. I WANT to be able to take care of my son again, to the extent that I did in the past, but what waits after surgery is a blank space of complete uncertainty. Recently, I’ve had people mention things that I’ll be doing after surgery or suggesting ways to move forward and I can’t help but internally think, “Well, thanks for the vote of confidence, but do you know what I experience.”? Of course, they don’t really.

I could paint a more positive, hopeful picture of what I’ll be doing after surgery, and whatever I might allow in my private moments, I don’t express outwardly for all the reasons stated above. I don’t want to be let down, but more so, the reality is that I just can’t predict what is to come, no matter how much I want to get back to my old life of predictable routine, of sustainable income, of the possibility of being closer to my son, of building on the life with Laura, of doing all those little things that people tend to take for granted or view with accumulated disdain and annoyance. I’m not saying my pre-cancer life was the greatest, or that I haven’t created new opportunities for my future with this forced downtime, but there are some basic comforts that you don’t appreciate until they are taken from you.

It’s becoming increasingly difficult to keep struggling each month, to find ways to get by without jeopardizing the healthcare that allows for my treatments, but above all, to maintain a general sense of positivity when I find it hard to plan for both the present or the future. It’s weird, but the reality that cancer itself is the problem tends to be during those initial or final moments, when I’m increasingly coming to understand that the worst of it is the life you can’t find to live, because it’s been paused by the uncertainty of the future.

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6 responses to “A Paused Life

  1. I ran across your blog looking for inspiration on adopting a vegan diet, because of my own health issues (possible multiple sclerosis – I’ve had issues walking for almost 5 years now – no one can tell me why) and because some of my best friends have had cancer very recently (*more than on friend)…

    I just want to wish you luck in your journey. The interruption in life and not being able to do things that you want to do because of an illness is probably one of the most frustrating things one has to deal with.

    I don’t have advice, but just wanted to reach out to let you know that you are not alone.

    May you be blessed with peace and happiness, and especially good health.

    ~Dawn

    • Thanks for the good words Dawn. I hope you find some information and a plan of action regarding your own physical frustrations.

  2. I just want to say that I think your ability to express your experience, and your fears helps me to deal with my own struggles, and I read this today just when I needed it. Thank you. Thinking of you, and wish you all the goodness.

    Lynda

  3. Thanks for putting all this out there and for telling your story! What an amazing journey, unfotunately you gotta take the bad with the good. You have an amazing attitude and deal with the bad way better than most of us ever could. Hoping your next surgery goes as smoothly as possible, will be thinking about you. keep on rockin’

  4. Pingback: The End of Summer Big Fat List of YES: Highly recommended reading from August and September 2015.

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