If I’m being honest…this sucks. This really really really sucks. But if I’m being honest…I’m doing pretty good. Very good actually. But again, if I’m being honest, this really sucks. And, if you want, I can keep going back and forth like this, because that’s really the honest truth. This situation really sucks, but I’ve found a way to make the most of it. And that is what I want to continuously reiterate in my blog, Facebook posts, instagram images and real life conversations, that the reality of living with disease is never one or the other. It’s a spectrum of good vs. bad, or juggling both at the same time. But it’s very rarely one or the other, depending on how you choose to view it.
It’s kind of like the weather. It can be cold outside…very cold, like we had this winter, but that doesn’t mean you have to hate it. You can choose to enjoy it, enduring the sting of the air, while you wait for the seasons to change and the warmth to take over. Living with disease isn’t much different. It is understanding that the situation isn’t ideal, but knowing that you can choose to make the most of it until it either runs its course or you find yourself on the other side of desperation.
What I really have trouble tolerating are the absolutes. The always positive affirmations. Or the always negative darkness. Living with disease (or adversity) isn’t an all or none prospect. It’s why I cringe at the unceasing flood of inspirational messages in social media, the photos of mountain tops and empty phrases written in bold, encased in boxes, telling you to LIVE YOUR DREAMS! LOVE YOUR LIFE! LIVE AS IF EVERY DAY IS YOUR LAST! Sure, yes, do that…but with temperance, with perspective, with the knowledge that the other side of the spectrum is necessary as well. Why not, EMBRACE YOUR ANGER! RAGE AGAINST THE OPPOSITIONS! PUT YOUR HEAD DOWN AND WAIT! Because the reality lies somewhere in the middle, in the fluctuating circumstances of our existence. It’s ok to hide in the shadows for awhile. There is nothing wrong with you. And it’s ok to be joyful in the light, even through the obstacles of disease. There is nothing wrong with you.
It is the reality of those of us facing down disease, living everyday with the knowledge that we are both whole and yet broken. It is also what those on the “other side” must understand, that we may look ok…but in an undeniable way, we aren’t. And yet, that even though we aren’t ok, we are also quite good. There is a very wide spectrum in the diseased state that can’t be avoided and it’s important that we express every part of it and that it is understood by others. It’s not easy, for both of us, I know.
I went in to the oncology office this week for my scheduled chemo treatment, a somewhat disturbingly routine affair at this point. So routine that I forgot I had a CT scan the week before and I would find out what the latest results of my prognosis were. Admittedly, I’m less concerned with what’s happening inside me now that the second HIPEC surgery is scheduled for August, but still, I was mildly embarrassed when my medical oncologist said,
“You had a scan last week and the results are the same. There is no new cancer growth, and maybe it looks a little better if anything.”
I was also a little surprised that I didn’t have much of a reaction to that news either, mainly because I knew it wasn’t going to change my chemo schedule and I would still have to endure all the side effects of the process, the “thumbs down” part of this experience.
But then I mentioned the pain I was experiencing in my mouth, which I learned was an expanding pus-filled abscess most likely caused by bacteria build up and a lowered immune system due to continuous chemotherapy. Thanks cancer. Surprisingly, my oncologist called off the chemo treatment for the day and rescheduled it for two weeks later, wanting to avoid any drug interaction or further complications with the treatment I was scheduling to receive to remedy the problem. I’m going in to have some skin cut away and stitched up tomorrow, which I’m dreading to the utmost extent. But, it has to be done.
We then talked about my physical activity some more, how much I was running and cycling, etc. With his usual disassociated banter, he joked about how fast I was running and why I didn’t run slower. I told him the quicker I ran, the quicker I finished and could get off my feet. I explained I can really only get in about 4 or 5 miles comfortably and 6 or 7 if I push through the pain, to which he inquired if I was going to run the mini-marathon (13.1 miles) this coming weekend….as if he didn’t even hear what I just said. I explained again that I’m lucky to get in 6 miles…
“But, can’t you just run slower?” he asked.
– “Well…no, I still have trouble with my feet. They are still a mess.”
“Yes, but if you just trotted along, couldn’t you finish?”
And we went back and forth a little more on this, when I realized he was either really bad at sarcasm or simply doesn’t understand what hand and foot syndrome is really like and how debilitating it can be. I couldn’t help but feel a little frustrated. Does he not know or not care what his patients have to endure? Does he really not know? And if the doctors don’t even understand how awful this situation can be, what about everyone else?
This is what compels me to continue being as honest about my situation as I can be, so that other cancer patients don’t feel so alone and the non-diseased have a greater picture of what we have to endure and overcome. I try my best not to be so “woe is me” and whine and complain away my issues, but I also don’t want to hide them from anyone. They are my reality, just as my successes are as well. I hope I’m still painting a complete picture, showing that we can overcome our physical complications and live our lives as best we can, but also giving us room to back off and rest and hide in the shadows when it gives us comfort or we feel we have no other choice.
Last week I ran, a lot, relative to what my physical level has been. I was excited and motivated and felt I could continue on, but knowing that I would have to take a break at the end of my pill week as the side effects from chemo built to an apex. And they did. I woke up Monday morning and almost fell over walking to the bathroom, the skin on my right foot so worn and sensitive that each step felt like the skin was going to tear in two and bleed all over the floor. On top of that, the pain in my mouth was growing and growing. The next day, when I’m usually recovered and ready to run again, I was useless. It was only Wednesday that, after my abscess ruptured Tuesday night, and the hand and foot syndrome subsided, I was able to get in a run on the treadmill. A powerful 6 mile progression run that started at 7:30 and ended at an encouraging 6:18 pace. I was excited again and ready to go at it some more, but today the wear and tear on my feet from the run had me limping in pain all day, knocked back down again…the back and forth of my efforts against my chemo mimicking the reality of my life.
I can be great and able and yet worn and broken…at the same time. And that’s ok. As much as that sucks, that’s ok, because that’s the reality of my existence and I accept that. I don’t accept that I have to be cowered in the corner, waiting away the death creeping in, and all the same, I don’t accept that I have to be a warrior of positivity, shouting inspirational phrases and being a superhero for cancer patients. I don’t. And no one does. All I have to do is be honest and genuine, and diseased or not, that’s all I hope everyone else can be too.
I hate my situation. I hate that it’s not a guarantee that I will see my son graduate 8th grade or high school. I hate that I may not get to build all the experiences I wish for with Laura. I hate that I may not be able to test my uninhibited running abilities again after the drugs have permanently flushed from my body. I would trade all the good I’ve discovered through this experience to have never begun cancering in the first place.
But I love my situation. I would not want to lose the friends I’ve found through all this. I would not want to have not met Laura or shown my son what is possible in the face of adversity. I’ve been able to grow in so many ways that I’m not sure I would have discovered without facing this down so concretely, but if I’m being honest…
This still sucks. It really really sucks. But this is good. This is really really good.
Ultimately, this is just honest. This is reality. This is the spectrum of living. This is putting my thumbs down as the expression of just how shitty this is, but keeping my hopes up knowing that I’m still here to experience it all. I hope you understand this dichotomy and I hope you embrace your own. No matter the physical circumstances of our existence, how we maneuver through them is all that matters. I believe honesty and an embracing of all our emotional capabilities is the best course. That has, for me at least, kept me from emotionally losing it through it all.
Thumbs down. Hopes up.