Those of us with terminal cancer have the unremarkable pleasure of figuring out how to live while we are dying; yet lately, I’ve had to put all of my focus into figuring out how to not feel as though I am dying while living.

Since I was diagnosed with metastatic pheochromocytoma a little over a year ago, there have been very few times I’ve felt out of control. Despite the grim future, the poor prognosis, the “palliative” care options, the complicated nature of the disease, I have kept myself distracted by always having a plan. I felt that if I kept ahead of everything, and stayed engrossed in the process, I wouldn’t feel victimized by the illness. I also wouldn’t be able to stop and slow down and really “feel” much of anything. I chose the path of resistance, I thought that by doing this, I would somehow be able to fight this disease.

We don’t ‘fight’ cancer, we live with cancer.

We fight for our lives, we fight to be able to smile, we fight to choke back the tears that threaten to come pouring out at any moment, we fight for the ability to wake up and maintain the impossible level of positivity we possessed when we started.

We fight for the ability to not scream when someone asks us if we are okay, how we are doing, and not break down in that moment because we are unsure whether to answer the way we think we should or just answer honestly.

We fight for the patience to explain ourselves over and over and over again to people when they ask what we have, because our disease is so complex, and so rare, one cannot begin to comprehend we cannot simply answer by saying _______ cancer… because it’s far too complicated, and it deserves awareness, we deserve awareness.

We fight for the strength to continue to cope with everything we are facing so that we can muster up the strength to continue to ‘live with’ whatever you want to call this, cancer.

In the beginning of my diagnosis, I still felt closer to my regular self. I could fake it a little more, it was easier to play the part of ‘normal’, and I could even take part in my own denial. There is always a multi level plan when it comes to cancer, mine went something like this: first we do surgery to remove as much cancer and infected organs possible, then we will do MIBG radioactive therapy to try and kill some of the cancer we cannot remove during surgery, and then later down the line when that is no longer an option and there’s nothing left that we can do, we essentially do chemotherapy and then typically people die. Now mind you every case is individual, that’s why the textbook 1-5 year prognosis is debatable. Some people can live longer, depending on their condition.

See, for the last year and a little while… I’ve had something to say “okay, this is next”, except now that the ‘multi level plan’ is dwindling away, I am feeling a bit like… okay, “what now?”

The fact of the matter is, there has to come a time when I have to start accepting the nature of my illness. I think that I have finally started to ‘feel’ the gravity of my situation vs trying to manage, plan, and control. Over a year has flew by, I’ve already had surgery, I’ve already done MIBG, and of course without these, I’d be dead by now, but that doesn’t mean I feel any better. In fact, my quality of life has gotten significantly worse. I feel very grateful that I am alive, but I still wish the life I have left could be spent living.

That’s the problem with cancer, every single step designed to treat you… will ultimately feel like it’s harming you in ten ways to help you in just one.

Living with death hanging over me constantly, while still trying to smile and stay positive is incredibly difficult. So far I have managed to do so by remaining in the moment, focusing on what’s happening right now. Although I will always hang on to my positivity, because it’s who I am, I would be lying if I didn’t tell you that this is becoming more and more difficult for me.

When you are given a time limit, you think… I’m going to do all of these amazing, incredible things. I will see the world, I will fulfill my wildest dreams, I will check off all of the things on my bucket list. Well what if you had a time limit, and you weren’t even able to do the simplest of things, how can I possibly fulfill my wildest dreams if I cannot even take a shower or climb a fight of stairs in my own home? I don’t want to ever utter those words, it’s not fair, but it’s not fair. You picture yourself being able to at least do what you wish with the time you have left, should you be in this situation, but often it’s so far from that movie-like fantasy. Forget my wildest dreams, at this point… I crave normal, I yearn for normalcy. I just wish for the remainder of my time to be spent with the ability to be normal, to carry out normal tasks, to be able to contribute and feel a sense of pride and accomplishment again.

I resent the fact that I am finally at the stage where I feel discomfort when someone speaks about something in the future, I feel a twinge of uncertainty suddenly. I just want to enjoy the time that I have, but I don’t know how to do that while I am so ill and in pain. I want relief, I have been enduring more and more pain in search of relief… only to find more pain.

All I can think about lately is a special Miranda friendly dream home tucked away in the woods, designed for peace and serenity… with NO STAIRS!, surrounded by nothing but the sound of nature, a porch with a nice cozy chair that I can sip hot tea and just sit and relax… that way if I continue to be able to do nothing, at least nothing could be stress free and fabulous…

Pheo VS Fabulous