Waking up WITH CANCER!
See that picture of me in the hospital bed with the bandage over my chest? That was taken on Feb 8th 2016. This was not long after I almost died in the emergency room due to excessive fluid around my heart (cardiac tamponade) but before I was officially diagnosed with stage 4 lung cancer. A day later and my life changed forever!
Several friends have since asked me what it’s like dealing with this illness everyday. Questions such as “what do you think about when you wake up in the morning?” or “what’s it like knowing you have cancer, and how you deal with that everyday?”
Well get a cup of coffee, feed the kids, put them to bed or whatever it is you need to do and sit down for what could be prove to be a very boring or interesting view into my morning mindset!
When I was first told I had an aggressive late stage cancer with no cure I didn’t go through the typical five stages of grief (denial, anger, bargaining, depression and acceptance). I pretty much went to acceptance. Certainly I asked if they were 100% sure but after they told me they ran several tests and they were very sure, I pretty much accepted the news. Later I experienced the anger and depression, but never the bargaining and denial. I don’t think I slept well that night, but with all the drugs I was on I did manage to get some shut-eye. This brings me to the topic of this post:
What were my thoughts/reaction upon waking up?
The very first morning I remember waking up and for a moment I thought it was a bad dream, then I slowly came back to reality and starting thinking about my girls. Immediately I starting crying – a lot! Not the uncontrollable sobbing and snot nose kind like when you get dumped or your favourite Game of Thrones direwolf dies, but the silent tears dripping down your cheek kind. I thought about being gone and my kids asking mommy where daddy went, or “I want daddy! I want to play chase with daddy!” Even as I write these words now I think about that and tears are forming. I thought about my wife having to grieve for her awesome husband while having to console the kids and how that could even be possible.
So in the beginning every morning I would wake up and cry. This was before they even had a treatment plan for me. I would wake up, cry, think about what the day could bring:
“Would I die today?”
“What would treatment be like?”
“Would treatment make life unbearable? Would I have to request assisted dying? No! F*ck that, I’m never giving up!”
“I need to walk my girls down the aisle!”
*Start crying again*
“What if we didn’t make it to the ER on time and I died last week? Would that have been easier? What? No! That’s a selfish thought!”
“I’m scared of treatment, I don’t want to do it! Why is there no cure yet?! What have all these ‘run for the cure’ and other events been for?”
The following week I would be sent home and it scared the shit outta me. How could I go home when I’m still so sick? I needed to be in the hospital around professional care! They told me I needed to go home and get stronger in preparation for my big fight! Bigger than Mayweather vs McGregor! (What a dumb idea for a boxing match, but I digress.) So I get home and now I have these oxygen tanks and compressor in my house. There’s a lot of fluid around my lungs and I can’t breathe properly on my own. So now every morning I wake up it goes like this:
“Dammit! I want to go back to sleep. I don’t have to think about reality while sleeping!”
“This oxygen line dries out my nose, great now I have a nosebleed. Is that the cancer killing me, or just a dry nose?”
“My legs really hurt, what is that?” (This turns out to be severe blood clots in my legs. Cancer gives you blood clots too… well shit!)
“My girls are up and running around the house, I want to play with them. I can’t” (Now the crying starts again.)
Eventually while waiting for a treatment plan, I would suffer not one, but TWO pulmonary embolisms! Those blood clots in my legs? Yea they broke off and went to my lungs to try its best to kill me. So back to the ER I go via ambulance this time. I actually thought I was going to die this time. (No life flashing before my eyes or any of that Hollywood stuff though!)
Now back in the ER they ask me to consider signing a DNR. Essentially if anything major happens there will be no attempt to save me. NOPE, didn’t sign that.
I start to get weaker and lose weight. It’s tough to eat when you have oxygen being pumped into your nose at what feels like 2 million PSI. Now they tell me I don’t qualify for any clinical trials because I’m too weak and it would probably kill me. So morning thoughts go like this:
- “Wow, still alive! Didn’t see that coming!”
- “Where are my girls, I miss them but I don’t want them to see me like this.” (Cry some more.)
- “Would there be more bad news today? I don’t see how – everything that could go wrong has gone wrong. Wait no, I’m still alive so not everything I guess.”
- I think about every moment leading up to my hospital stay. “Did I miss a sign or symptom? Had I caught this earlier, could I be cured?!”
- “I didn’t smoke, how the hell do I get lung freaking cancer?!”
- “Did I inhale something when I was in my attic running network cables for my house?” (I asked the doctor, they said no. Just shit luck.)
- “Maybe it was second hand smoke? I’ve been around a lot of smokers in my younger days! What’s the point in figuring out the cause, we’re here now.”
The doctors have a big meeting to discuss giving me chemotherapy. They say I’m too weak and it will kill me most likely. I say just friggin do it. What’s the worst that can happen?
The doctors find a mutation in my cancer, there’s a targeted treatment they want to try! There’s hope!! Also they bring in therapy dogs!! Look how cute those puppies are!! They say they want to drain the fluid from my lungs. BOOM! In goes a needle into my chest from under my arm. Ouch, but I already had a needle jammed into my heart, this is nothing. At the same time they are hooking me up to a chemo I.V. I start doing better and they send me home. They also put me on morphine, an anti-depressant, anti-anxiety, a blood thinning injection, a drug to empty my stomach contents more quickly so I don’t get nausea and a laxative because morphine can seriously back you up. I can’t say with 100% certainty, but I’m pretty sure it’s easier to push out a baby. 🙂
Now my morning thoughts are like as follows:
- “Wow I’m tired.”
- “Oh yea, cancer… FML.”
- “Time for shot to my stomach, yay.”
- “I just want to go back to sleep, being awake is too sad.”
- “Get up and try to talk to your kids, stop being a shitty dad!”
- “I can’t move, I just want to sleep. GET UP, GET UP!”
As time goes on, I start doing a lot better. I gain some weight back (ok ok, a lot of weight back! Happy?!) and I’m breathing without supplemental oxygen. I’m stronger and I’m able to move about more easily. As time goes on, I’m able to prepare dinners for the family and pick up my girls from day care and play with them a lot! Fast forward to today and I’m doing pretty well all things considered, but there are still those thoughts when you wake up.
- “I still have cancer. This sucks.”
- “Time for my POST. (Power on self test)” (I’m like the coolest nerd in the world!)
- “Ok, my back sort of hurts, did I sleep funny or is this the cancer?”
- “I feel sort of sick, is this a regular cold or is this the cancer?!”
- “What else feels funny? My leg hurts, but it does’t feel like that blood clot feeling, something else must be going on.”
Then I get my daily shot of blood thinners. These are very small needles, but my entire stomach is bruised and tender. The doctor says it’s best to administer it to the part of your body with the most fat; my stomach is the clear winner. The girls are usually up and like to lay on the bed with me and cuddle me while telling me “it’s ok daddy, it’s ok.” This actually makes it a lot better – they’re so sweet! Every now and then Evelyn will ask if I still have cancer and tells me she doesn’t like when I was in the hospital. I tell her “I do still have cancer but daddy is doing much better.” I don’t show it, but on the inside I am bawling my eyes out. She should not have to think about these things! She should just concentrate on being a kid and having fun! They leave for daycare and I just lay there and cry. It was a lot worse in the beginning but now I don’t cry that often – I still do, but not often. Some other morning thoughts:
- “I’m very tired but I can’t fall back asleep.”
- “I can’t stop thinking about this stupid cancer.”
- “I’ll just browse Facebook and my phone and secretly judge people. That will take my mind off of it!”
- “Oh look a cute picture of someone’s kid! Wait, that kid’s car seat is not strapped up tight enough!! What are you doing?! I should say something! Nah, delete that comment, I will just cause a scene!”
- “Oh look, someone is posting an article about secret cancer cures being hidden by big pharma. *I roll my eyes so hard* Please don’t send me some miracle cure article crap!”
- “Hmm a facebook memory of when I was healthy and had hair, those were the days!”
- “Oh, someone is posting condolences about someone who died. Yup, that person died of cancer… great…”
- I turn off the phone and just lay there trying to convince myself to get up and start the day. It really is hard to not think about the fact you’re dying. I’ve convinced myself that I’m going to beat this. I’M NOT DYING! Well not anytime soon anyway.
- “Just keep living Wayne. Hang on, they will find a cure or some better treatment. You can do this!”
Just look at how many reasons I have to keep surviving! (People call me a fighter and tell me how proud they are of me, but really I just take the drugs they prescribe and hope for the best.)
Also there are some days where I can go the entire day without even thinking about the fact that I am sick. Those are the really good days! So it’s not all bad!
Thank you for always being there!
For all those going through a similar struggle and need someone to talk to, I’m here. I pretty open about my condition and no topic is off limits!
You are a very brave person and a real fighter and this is what is needed to get better. Your family is very lucky to have you and don’t you worry, you will walk your girls down the aisle.