You never think about the unfathomable things you could encounter in your life. It’s unimaginable, unless you’re immersed. But, when the unfathomable or unimaginable does catch up to you, you have no choice but fathom and imagine. You cannot predict life’s course, no matter how much deep contemplation you invest. It will always surprise you in the end. My life’s course, has been unpredictable at best. I don’t dare dwell on what lies ahead. I believe the choices we make, have the potential for drastic impact, and hope that my past transgressions don’t punish me severely in the future.
If you’ve never been to a cancer treatment hospital, I invite you, no wait, I implore you to go down to one. Do yourself a favor, and have a coffee at one of the coffee shops located within and just sit and watch the people. Even better yet, go to a children’s hospital. This should change you. Perception and perspective are everything, so put yourself into any one of those souls’ shoes and adopt yourself a death sentence or terrible illness/injury, and attach a bumpy ride through it.
For context and as an example, it feels like being thrown into the back of a pickup truck that accelerated to 150 mph instantly. Flying through a rocky and crater filled field in the dark, while wearing a blindfold with hardly a handle to hang on to, you will experience being out of control. The wind whips by so fast that you cannot breathe. The only thing that may quell the panic of breathlessness, is to curl up into a ball and tuck your head tightly into your body. Attempting to catch those desperate gulps of oxygen, to help slow your panicked brain and collect your thoughts, consumes desperate time. You cannot remain curled up, or you simply will not survive. You will do a lot of clinging, to a great many things. You will cling to hope, modern medicine, your convictions, and for many, your faith and God. You will be let down on your journey at some point. You will encounter some or many of the twists and turns that you were scarcely informed of, without any idea the outcome or have any understanding from anyone while going through them.
Not to mention, you will encounter the frustration that comes from the abject denial of your reality, and that there is a refusal to accept that all humans are unique. You will feel alone and you will have questions. Your questions, will either a:) have inadequate answers, or b:) not be answered at all or, c:) will be dismissed, earning you a label of either being difficult or disgruntled when you push for answers. In between all of this, there will be moments of panic filled flailing, while searching for something to hang on to, as you attempt to move toward a perceived ‘safer’ position within that truck bed. Now, if I’ve done an adequate job, you should have the appropriate mindset and I think you’re somewhat ready to try and relate.
This is where I seriously began to learn about letting go of the control I thought I had in my life. I realized, control was some sort of distorted myth, akin to a sparkly colorful unicorn. We are all one degree away from total decimation in any capacity or the complete opposite. One uncontrollable event, no matter the size, can turn your life in any way. I laugh, because there’s so much information, hellbent on helping you to gain control of your life, but they neglect thought on how untamed living truly is. There really isn’t any control over what happens at all. Your path, your journey, is all unique to you. Your choice, may or may not affect the outcome, that’s what makes it interesting. Now, let that film roll play out in your mind, while you are enjoying your beverage and observing the shuffling about, within the death facility of your choosing.
I think many individuals contemplate their mortality and illness at any given moment that they are alive and living in those hellish moments. I know it was a constant thought in Lea’s mind. It should be known, the ride isn’t smooth for everyone, and I also know that not everyone dies that has cancer. As I’m not Lea, and I’ve only had the insight she shared with me into her thought process, I can only imagine what it’s like to live with cancer. If I’m honest, I’m being dismissive of my own thoughts with regard to what I went through with Caelan, so I guess I do have some sort of idea. Anyone who hasn’t had these moments while dealing with an illness, I wish I had your superpower.
We thought it best, that Lea go to the cancer hospital in the area Clem and I live, and move her family closer to it. Having to drive two and a half hours to a fully equipped hospital for treatment wasn’t feasible and knowing about chemotherapy and it’s side effects, coupled with being farther away from such a facility, could be bad news. Especially when you factor in winter driving conditions, and scarce or expensive accommodations in a small city. Chemotherapy is also ordered and concocted on an individual basis (it was for Caelan). Receiving a call from the hospital, the day of or right before treatment because they didn’t receive medications due to weather or other delays from a larger center, wasn’t acceptable either. Having an illness of this magnitude, changed many things for Lea, that most people wouldn’t even have to consider. Talk about an inverted and shaken pickle jar for a life.
Cancer facilities and my observations thereof
When we walked through the huge automatic sliding doors of the hospital for the first time, the unexpected nonchalant nature of the place hit me like a bag of shit being tossed out of the window of a moving vehicle. The atmosphere was almost too casual for me, and that made me realize that there is definitely a problem with this picture. The other thing that struck me that morning; we were the youngest ones there. Don’t get me wrong, as we went along over time, I saw a few young faces. Alarmingly, that number seemed to increase over the two and a half years. I feel that my last statement, should ring some alarm bells. If it doesn’t, maybe you should remove your head from your ass, shake the shit out of your ears and wipe it from your eyes. Sorry, too forward? Not sorry. Now that I have your attention, this is serious, so listen up! I think that we will all be walking this path in some form or another in the future, if we don’t make some changes.
This is a huge problem, and why I am writing. I have questions. You all should too, and I mean everyone. I feel like I know or know of, more young people who have diseases or conditions or have died, than my parents knew at this age. Actually, despite age, more people in general. Herein lies a prominent question. Is there truly, an increase in people with illness and/or are we simply over diagnosing and over treating? I know we’ve become better at identifying things, but not better at differentiating or understanding these things as of yet. I think there is a combination of factors, that go hand in hand, and have probably answered my own question. But, do other people realize what’s going on? Or, am I correct in thinking that denial and dismissal are playing a huge role? I will continue to mull.
I reiterate, my sister was sick and pursuing a diagnosis, not just getting routinely scanned and stumbling upon it. There’s a difference. Her disease was causing life altering symptoms, which did require treatment. I have been doing plenty of reading these past few years and it has been life altering for me, especially after the roller-coaster I’ve endured. More on that topic another time, but I just wanted to put my observation out there for you to ponder while I tell Lea’s story.
The awkwardness and sadness of the stares from the packed check in/‘concierge’ (they don’t want you to feel doom, nor the gravity of the situation, so let’s make it light and fun, like a hotel) will forever be burned into my mind. They all seemed to ‘know’ and we had yet to acknowledge this ‘know’. We had no idea what to do, so we just got in line, and our adventure in Adult Cancer 101 began.
The people working the front counter, were very helpful. Of course! This is the service industry, is it not?! We were given all we needed to know and the process began by giving all of Lea’s information that ‘defined’ her as a living being within the medical world. All of that information, contained within a credit card like piece of plastic, became her identity within this dysfunctional and barbaric ‘system’. Whenever you set foot in that building, you need to have that card and the number assigned to you, to identify you. I’m surprised the attire they have on site, doesn’t have stripes…jail anyone?
Honestly, that’s how I felt. This industry (where I’m from anyway), herds you down this narrow hallway of ‘standard of care’ one size fits all, which only gets more constrictive as the journey progresses. You continue with hope and with room running so scarce that you can’t turn around, until you get near the end and realize that this isn’t the path you should’ve been forced down. Despite it being the only path, you can no longer turn back. Everything you were lead to believe, was misleading, cruel, and inhumane and for what? This part, hurts me the most. Lea knew this. She never wanted to walk down this path but had no choice near the end. It set in solidly for me, days before her passing.
Navigating the ‘system’
Once checked in, I think Lea had to have a CT scan and x-ray before we got to see an oncologist. I’m terrible, but I deal with heavy shit using sarcasm and dark humor to lighten the load. I know that there is a line and when to stop, but that day, I just wanted my sister to have a moment to forget. So, in ‘Ali fashion’, I started in on the teasing. They told her ‘everything off’, and thought she knew where the gowns were stashed, not so. So I loudly explained for her to come out to the large waiting area naked! No jewelry, no clothing, nothing! She didn’t, but I thought it would’ve been funny! We finally got that sorted out while having a laugh at her expense. I think we laughed so hard we were crying and one joke turned into another and before we knew it, others in the waiting area were laughing too. I have no shame. One of the fond moments I will hold on to forever.
We basically ‘shuffled’ from one place to the next and I think we also ended up doing a massive amount of blood work before we finally got to the holy grail of the place, the oncology consultation area. I love how we are weighed and measured like fish or game before being dressed and presented to these people we call specialists. Maybe there’s some unhealthy obsession about food that we don’t know about? Addiction to perfection and routine perhaps? OCD? Or, role playing? You’re wearing this prison issue gown, that establishes your role as the patient, and I am wearing my nice white lab coat, that establishes my ‘authority’ and ‘expertise’ as a doctor…exertion of dominance?…who knows? Quirky.
Anyway, I will never forget the anxiety I had after they shoved us into one of their tiny little rooms, just waiting for whomever it was that we were to see. I can’t imagine the thoughts rushing through Lea’s mind. I don’t even know if we had a name or a specialty or whatever for the man that breezed through the back door.
He knocks and walks, typical doctor fashion, and extends his hand, says his name and says he’s a radiation oncologist. Ok, wait a second….radiation, already? Lea and I were confused. We thought we were there to learn about what she had and get information. But here’s a radiation oncologist right in front of us, ready to go. Isn’t that something? Speedy service! We should be so lucky?!
I actually know of someone who died waiting for a consultation for cancer. If I remember, it was a few weeks, if not almost 2 months waiting for a call. This individual was quite ill by the time they found out it was cancer. I understand, that many cancers aren’t discovered until late anyway, so this could essentially be a moot point, but I find Canadian ‘health care’ very unpredictable and inconsistent.
If you’re sick, just get in this line over here and we’ll be with you at our earliest convenience. Not sure if they cherry pick, or how that lottery is done, but I can tell you that I think many die or worsen while waiting and often, things are not taken as seriously as they should. And the flip side, sometimes you get in so fast, you have to wonder the motivation behind it. While no system has been perfected…yet, this one is still extremely flawed despite what many people think, and the factors that influence it are exceptionally vast. More on that later.
Anyway, I think it registered that we were completely uninformed and he’d asked if we knew Lea had lung cancer and that it was in fact stage 4. We said we were waiting for an official diagnosis and explanation of stage, because after the bronchoscopy, the guy couldn’t say and wasn’t willing to either. Unless, Lea drove the two and a half hours back to see him a week or so following the biopsy. The small town doctor didn’t give much detail as well, so we were a bit clueless. Don’t ask, don’t tell policy here. Really helpful, and so much better for our sanity. Thank you healthcare, for mind fucking us, so you can have the upper hand in shifting us to your standard of care treatments without question. I salute you, masters of Risk, or maybe Monopoly is your game?
We should’ve known better (we accept that this instance was our responsibility and learned a valuable lesson), and requested copies of Lea’s information beforehand. As we went forward, we had times that they gave the copies willingly, and other times they’d conveniently forget. We made sure we got what we needed every time thereafter. You’d think they’d make sure you had your information period, but that’s not so. I prefer being prepared before getting in front of someone and not wasting time. If these professionals truly want better for their patients, they might try working on their communication skills. For some reason, I’m skeptical of any sincerity on doctors wanting what’s best for patients, I wonder why?
The oncologist asked if Lea was having trouble breathing, to which she said no. He looked shocked and said, something to the effect of there being an 8 to 10 centimeter tumor in her lung at that moment. I think we both looked like we just ate a bag of pissy scorpions. He went on to say that it had spread to her liver and her kidneys as well. Spots all over. Just call her Perdita and avoid Cruella de Vil. Holy plot change! I’m sure we had the look of ‘dumb’ etched across our faces due to the silence that followed. He finally stood up, and asked us to follow him through that secret back door so we could look at her imaging. Finally!! The mystery was about to be revealed!
Behind the scenes was busy and chaotic. The oncologist pulled a wheeled chair over for Lea to sit on, while he punched in whatever he needed to pull up her file. In front us, a computer screen displayed a picture of her lung and the tumor. It cast an ominous bright white light that distinguished itself stoically amidst the grey and black colors of the x-ray. Lea sat, looking sadly at the huge mass. He explained that their measuring wasn’t completely accurate (he demonstrated with a ruler), but by his estimate of about 8 – 10 cm, it was the size of a grapefruit (here we go with fruit again). He left us for a moment, and said to take the time we needed to peruse the films and digest. We sat in silence for a moment, then simultaneously looked back at one another and blurted out “holy shit” in unison. Lea just put her head down, shook it in defeat (my dad has the exact same mannerism) and got up from the monitor. Time to face the music.
We filed back into the tiny room, and the oncologist followed a short time later. He re-stated that he was there to offer palliative radiation, if she was having difficulty breathing. Palliative. I wasn’t expecting that word right off the bat, and I had no idea nor understanding of what it meant at that time. We asked about treatment, and he seemed shocked to learn that we hadn’t spoken to anyone else yet. I can’t remember, but I think he arranged for us to see the medical oncologist the next day. I can see why we saw him first, but it may have been better if he’d known that we were a bit clueless before we met him.
We thanked him for getting us up to speed, and left without making any arrangements for radiation. He told us that if there were any breathing issues, they could radiate it to help alleviate symptoms. My sister and I knew we needed to do some reading and make some decisions. I think, in hindsight Lea was probably having breathing issues, but didn’t really give it much weight. I remember she couldn’t sleep at night, not just because she was still nursing her one year old, but because she also had to sit upright to try and quell the coughing. We still weren’t given a specific name to this beast as of yet, it was still only known generically as lung cancer.
We left the facility shortly thereafter. Most of our day was spent at the hospital and we were exhausted in ways we never thought possible, both of our minds still whizzing. As time passed, on the drive, I saw the fire burning in Lea. She finally looked over at me, and basically said to get my boots on, cause WE were about to kick the shit out of her cancer. I informed her, that I hadn’t yet removed my boots from Caelan’s battle, and that I’d happily keep them on for her too. They were 1-0, and ready to go. I loved her fight style; the dirtier, the better. The girl had guts and heart. A true warrior.