As I continually repeat my thoughts on hindsight, I think of myself as quite the idiot. I should’ve listened to my gut or ‘sixth’ sense and acknowledged what it was telling me outright. It’s not as if the clues and hints I’d picked up along the way told me otherwise. My kid had a biopsy, there was no wait and see time period there and they’d just finished a PET scan, all within a week. I’m pretty sure they wouldn’t have done a biopsy and PET scan if they didn’t think it was cancer. It doesn’t take a genius to figure that one out.
We had mixed signals from the pediatric oncology clinic compared to the surgeon and the pediatrician. I understand that they don’t want to say anything until there’s concrete evidence, but when the gauntlet has been run and they say it’s still yet to be determined, to me, that is lying. And that kind of deception, isn’t repaired easily. In fact, how many relationships come back from that?
All I’m saying, is that it doesn’t matter what the scenario is, lying is lying. It causes some very intense feelings and reinforces the need to protect oneself, a survival mechanism. It is human nature after all. Unfortunately, the journey we were about to partake in, included the pediatric oncology unit extensively. Lying, at the beginning of a relationship, fails to form trusting bonds, does it not?
With that, we were expected to place all of our trust in them to make the right decisions in the care of our daughter. For me, this was difficult. Remember what I said earlier about trust being earned? Well these folks don’t think that way. It’s automatically expected, without question. If you don’t, well…there are consequences, big ones, that don’t affect them. Doesn’t that make you feel all warm and cozy inside?
Choose your donkey wisely
Deep down, I knew. I knew it most definitely. I have a little background in investigation and the things I gathered along the way, confirmed it early on. A small part of me wanted to buy into the tiny speck of comforting thought that it wasn’t, but my instincts told me otherwise and grossly overshadowed it. I will never let anyone talk me into ignoring my instincts, ever. If my instincts turn out to be wrong, I’d rather be prepared for the worst, no matter the cost, and dependent upon the circumstance of course.
I’d rather look like an ‘ass’ for being over prepared than the ‘ass’ that isn’t. I think it’s much better to have your ass covered at certain times, don’t you? You never want to be caught with your pants down, I think most will agree on that. Yes, there are many types and kinds of ‘asses’, so choose wisely.
As soon as the phone rang, Clem was up instantly to grab it. He sat down at our kitchen table before answering. Outside, we had a lawn maintenance person in our yard aerating, that just happened to knock on the door minutes earlier and was busy working away making holes in my lawn, leaving turd like plugs all over the place. I was sitting on the couch in the living room, suddenly feeling the instant flood of dread fill my body at the sound of the ringing phone. To this very day, I still jump out of my skin every time the phone rings.
As Clem answered, everything fell silent. I could hear Clem talking, but nothing was registering. Clem scribbled away on a piece of paper in front of him, repeating what he was writing as the pediatrician said it. I don’t know if he said it aloud for me to hear or to say it in confirmation.
Words I wish I never heard
All I remember hearing were the words malignant, cancer, Anaplastic Large Cell Non-Hodgkin’s Lymphoma.
That was the truck that hit me.
Floor…couldn’t be found. Air…nothing to breathe.
A weightless, airless, vacuum where time stood completely still and I felt like I was actively dying. While I was sitting, I felt like I was falling. Nothing to grab on to for support, just an uncontrollable, fearful falling. Believe me, when you finally hit the bottom, your body reflexively makes you gasp for air in an attempt to restart itself. It isn’t a pleasant feeling. The air isn’t refreshing, and your heart beats furiously to make up for all the ones it missed when it stopped beating.
We knew, but we didn’t. There’s just something about hearing it and being confirmed for some bizarre reason that does this. My mind denied my own thoughts and reasoning but accepted willingly from others, weird.
Clem eventually hung up the phone. We finally had the answer we’d been desperately holding out for. It wasn’t the answer we’d hoped, but it was an answer nonetheless. Our life had completely stopped up until this point, and as the world continued to turn, it dragged us along while we waited. In that moment, everything we’d put on hold, felt like it rushed in and caught up to us. The emotions I’d expected to feel, were completely the opposite. It wasn’t like finding a missing object and feeling the victory of its discovery, or the ‘ah ha’ moment of solving a mystery.
It was plainly, pure dread.
Caelan had a type of cancer called Anaplastic Large Cell Non-Hodgkin’s Lymphoma, confirmed by the biopsy and reported to us by the pediatrician. He’d been watching for the biopsy results all week. He didn’t hesitate in letting us know when he did, and for that, I am grateful.
The dread I’d felt prior to this moment, felt like it had dissipated somewhat over the week, and it suddenly reared its ugly head again at hearing the bad news. Maybe, I’d just become familiar with feeling it constantly and only became aware of it when it flared, I’m not certain. I can say that the life and wind was knocked out of me at the same time in that instant and I felt the most hopeless and helpless I’d ever felt in my entire life. I struggled with wrapping my head around it and instantly rejected the reality outright. This wasn’t my life, this wasn’t how it was supposed to be. Why? Why Caelan?
The demon has a name
We finally had a name for our demon, and now we just needed the missing piece as to how big it was. Was it going to be puppy sized with some chewing and potty training challenges or an aggressive dragon sized beast with vicious and dangerous tendencies? Maybe a combination of both? Puppy sized ferociousness? We could always hope. Clem and I sat for a moment to collect ourselves and allow the news to sink in.
We’d been through some shit before, nothing like this, but we’d vowed to remain together and get through it the best way we knew how. I’m not going to lie, we’d had some shitty days, but this was a new kind of day entirely. Being committed to getting through together was never going to be a complete walk in the park on a beautifully sunny, perfect and carefree day every single day.
We were willing to do whatever it took to make it out intact. As we’d promised each other years earlier, in sickness and in health, the same applied on the days of each of our children’s birth. A silent vow never uttered aloud, but instantly sworn the moment we’d laid eyes on both of our newborn children.
We’d all like to think that we will never see the day when our walk in the park is at its worst. It varies as to what causes our parks to assume its most unthinkable, horrible state. We can’t judge because we are all different and affected differently by a multitude of things, so there’s no map or pamphlet to tell you what to do or how to handle it. You just have to keep walking, do the best that you can and hope your park returns to a more familiar or easily traversed state.
Some of our worst park scenarios consisted of torrential downpours with tsunami like flooding, being enshrouded in constant, blinding darkness causing us both to become separated, lost and completely alone. Think of it being full of death and suffering, while immersed in subarctic temperatures and feeling completely helpless. It’s not a fun thing to think about, but most of us will wander through a park that isn’t ideal at some time in our lives. We all have unique ways of getting through that park, and I think that that is what’s most inspiring to me about every human being. I made a catchy little Dr. Seuss like phrase about that…
There’s more than just one way to make it through, you just have to find the way that works best for you.Me…as in Ali
I know! Cheesy, right?
The end of our ‘normal’
So much for a normal, laid back weekend at home. We had half of the information we were looking for and now my mind was taking me down the absolute worst case scenario path. Could Lymphoma move that fast? How long had that lump actually been there before Caelan noticed it? Was it going to be stage 3 or 4? Was Caelan going to survive? Was I? Were we?
The mind is a wonderful and crazy organ, and I struggled to try and rein it in. I’m usually a rational person, but I must admit, irrationality can easily become you. Especially when you feel like you’re sitting in a tiny rowboat on an unpredictable and sometimes merciless, wide open ocean. I had zero control over what was about to happen and no clue as to what to expect.
Being at the mercy of life happens to someone every second of every day. Many choose to place a mask of stoicism over their natural face during these times. We don’t realize that in seeing this mask, we are protected by the veil of deception. This leads most of us to comfortably accept denial of the realities of the facets of life and that they won’t or can’t affect us, nor that terribly. We underestimate other’s struggles immensely, until they become our own.
Society and its rejection of reality
Don’t get me wrong, realities catch up eventually in one way or another, sadly. Although we cannot live in fear every waking moment, maybe acknowledging that an arduous and trying time can eventually befall each of us at any given moment, would allow us to be more accepting of what life truly is. I think this would further our compassion and empathy for one another.
I believe we can only get better over time with acceptance and understanding, but when will we ever start? Maybe we should start with recognizing that sometimes ‘stoic’ people are donning a mask, solely based on the fact that it’s what society accepts and demands to see because many can’t handle the ugly truths of life. It doesn’t align with the fake, shallow, beautiful ‘reality’ that society deems acceptable, so they try and cover it up.
We need to understand that the struggles are real and sometimes very dirty and hideously ugly, and that that is true reality. Beauty is a part of that as well, so don’t cover it up. We fail to realize, that the reactions and feelings surrounding it are human and shouldn’t be concealed. I refuse to wear the mask and lie to others about my reality.
I’m just going to say this, if you’re going through some shit, it’s okay to react and wear your feelings like a normal human being. There’s no need to put on a mask of bravery if you’re not feeling it, just to appease and provide a false sense of comfort for others. Be your real self and be honest with yourself. Your future healing depends on it. It’s one thing to mislead others but wholly another to lie to yourself.
Our days of ignorant bliss and the false sense of security that accompanied it, ended that day. A new life was beginning to emerge. This wasn’t a story I’d choose for anyone, especially my young daughter, but sometimes we simply have no choice but go through what life sets in front of us.
The path of this new life was about to be laid, and the decision as to how we would navigate it, was short to follow. If only we’d had a crystal ball or a money back guarantee to make this choice easier. Unfortunately, real life doesn’t work that way and honestly, that would make it really cheap now, wouldn’t it?
And so it began. Like the fashionista, I am not (I’m more of a functional type gal), it was time to take off my comfy worn in running shoes and consider what boots to wear, combat or hikers? Shit kickers or the long, winding mountainous road boots? We were about to discover a path not taken by many and one that I’d love to see demolished in the near future because I think we can.