My journey INTO CANCER!
How did we get here? It angers me that we are here but maybe some of you are wondering what this journey was like? Most likely not, so for those just skip this post. It will probably be mostly my incoherent thoughts and rambling. Ok let’s do this:
(There is a visual timeline at the end, so you can skip all of my babbling and get the gist of it)
🎵Law and order dun dun 🎵
I go to my family doctor for my yearly physical. “Turn and cough” he says. I comply uncomfortably. “Everything feels fine, do you have any discomfort?” Emotionally holy shit yes! Otherwise no – everything is fine. I get my results of all the tests “you’re the healthiest guy I’ve met!” Leave happy and go to work. Later that day my football (soccer) team has a match. We win… again. Our team goes on to win the championship and are crowned league champions. We even get t-shirts to prove it! My family even comes to see some games. “Go daddy go!’ Evelyn yells from the sidelines. I love it so much hearing her little voice cheering me on! I have to say life is pretty great at this point. Work is good, I have a beautiful 7 month old (Norah) and a 3year old tantrum machine who is still beautiful and fun (Evelyn) and an amazing wife on maternity leave. Everything is perfect.
I go to Chicago for a conference. If you’re curious it’s about a web CMS product called Liferay. Only 2 days and we had yummy Chicago food too! Honestly Chicago style deep dish pizza is not very good. I get home and I have a slight cough. It’s annoying but I brush it off. December comes around and time to start Christmas shopping! I have a pain in the back of my right calf and I limp a little. I brush it off as muscle soreness from football. The season is over now though. If I walk around a lot or a warm shower it feels way better. I go Christmas shopping with my sister and then we go to lunch at a jerk house. So it turns out the pain is a good sign of DVT (Blood clot) but I hate admitting I’m sick so I ignore it and make up reasons for it. It eventually goes away so I think everything is fine. My cough is getting a little worse now. As I usually do at work everyday I take a walk to my friend Maria’s desk to say hi. I’m coughing and she asks if I’m ok and I reply “probably cancer or some shit” “don’t joke about that” she says. Wow I think about that moment a lot. Of course I know me joking about that had absolutely no effect on the current situation. I’m not superstitious and don’t believe in jinxes.
*fade transition *
Norah turns 1! Time to start taking her to daycare! My little girl is getting so big! I take her and Evelyn to the same amazing daycare: Debbie’s day care near Derry and McLaughlin – amazing place! I’m still coughing and climbing stairs for me is getting harder. I join an indoor soccer league that I hate: it’s a format I’ve never played before where there is no out of bounds. There’s a glass wall on the sides you can bounce the ball off and behind the goal is a wall so if you shoot and miss you can get a rebound and keep firing away. It’s stupid. I run 5 yards and I’m winded and coughing. Something is definitely wrong with me. Now I have a pain when I straighten my left arm. It hurts so much I can barely get Norah out of her car seat and into daycare. I go to a walk in clinic to talk about my cough. They give me antibiotics for the cough and then another doctor thinks my arm pain is cellulitis and give me steroids. The first doctor thinks the one that said I have cellulitis is insane because that’s not something you easily get unless you are hunter in the woods or something.
*slowly pan to snow falling outside my window*
It’s now early February 2016.
I have breakfast before work and then throw up. I brush it off as the antibiotics making me sick. I’m also not sleeping well because I get this strange bubbling feeling in my back and chest and cough and also nauseous a lot. Stephanie drives me to work and the girls to daycare. At work I’m winded after walking 10 steps. What the hell is going on? We get home and I barely eat dinner *red alert!*. The next morning I can barely move and we go to a walk in clinic and I think I have a appendicitis (thanks webmd). The doctor said no and to go home and get some fluids and if I still feel awful to go to the ER. After a couple hours of me feeling awful and not being able to drink or swallow any food I tell Stephanie she has to take me to the hospital. This is no easy task with two kids! I barely make it into the car by myself and Stephanie gets the girls secured. We drive to the hospital and Stephanie is trying to wrangle the kids. I make it to the ER doors and collapse onto a wheel chair. The triage nurse takes my blood pressure: 50/20. Her face turns white and they rush me into a room and an army of doctors swarm in. “Get a crash cart, get an ultrasound, get an IV in him!” I hear Evelyn outside “why are they taking daddy’s clothes off?”. “Sir ‘you have fluid filling around your heart” I yell “I can’t breathe! *gasp* can’t breathe” “sir we to do an emergency procedure and need consent! Someone get his wife! Get consent!” I yell ”I’m giving you consent just fucking do it! Do it!” Bam! They stick a needle into my heart and the fluid starts draining out and I immediately feel better! “So can I go home now?” I ask. They say they are transferring me to CCU (ICU for cardiac scenarios). I had a cardiac temponade. Could have been fatal. Two nurses come in the room, one’s a student nurse. “We have to put in a catheter.” They say. 😳 “wait wait, just so you know it’s really really cold in here!” I say. Y’all know what I mean.
Now the real fun begins.
“So we found some abnormalities in your lungs on the x-ray”
uh oh, that can’t be good…
“let’s take you down for a CT scan”
“There was some malignancy in the fluid that came out of your heart”
I see where this is going!
”An oncologist is coming down to see you”
”Wayne, are you a smoker?”
I am not, never was. Yea there was some weed in university, but come on!
”We need to do a bone scan”
Here you drink a mildly radioactive drink then you lay still for about 45 minutes. It sucked. Especially when you really have to cough all the time.
”We are pretty sure you have stage 4 metastatic lung cancer.”
How. The. Shit?! I don’t smoke, I work out, I live a relatively healthy lifestyle. Just a couple months ago the doctor told me I was insanely healthy!
”This is a particularly aggressive cancer, could have started only a couple months ago. It also spread to your bones”
Fine. What do we do now?
”Let’s transfer you up to the oncology ward”
My sister and I go with the porter to a fancy private room in the oncology ward. Hey if you’re dying might as well get the best room you can right? When you check in to the oncology ward they take two swabs of you: one a nasal swab and the other a butt swab. “Don’t mix those up!” I tell the nurse.
I meet my new oncologist and the nurse practitioner for the ward. They are amazing people! Then I meet with a palliative doctor. This is scary but it’s not always about death, they are there to help with symptom management during treatment.
I also ruin multiple vacations. My in-laws were in Hawaii and my mom was in Trinidad! They all fly back immediately. I feel awful, but they love me and want to be there! I really have the best family!
At this point I require supplemental oxygen because there is a lot of fluid around my lungs. I hate it! The air really dries out my nose and makes it hard to eat. Also walking around with the tube attached to your face is annoying.
Now my legs both really hurt. I can’t stretch them out without pain. I complain and they tell me to get out of the bed more and move around. These are actually DVTs in my legs. Really bad ones. They give me a blood thinner every day but its not very much. They refer me to a world class oncologist at Princess Margaret Hospital. I go for a couple appointments and they will like to put me in a phase one trial. Really? A phase one trial is essentially checking to see how much of the drug people can handle, not the actual efficacy of the drug! “Let’s give that guy 10 pills. Did he die? Yea? Give this guy 9 pills!”. That’s how I picture it anyway.
The Brampton doctors say they have amazing trials there and to consider their’s instead. I just want a consensus and a firm plan! They discharge me saying home is the best place for me to get some strength back and get ready for treatment.
So the leg pain is still there. One day I find myself really short of breath. Off to the ER! They do a CT and guess what? I had a pulmonary embolism. They put me on a higher dose of a blood thinner called fragmin and I get to go home. Two days later I’m using the bathroom and suddenly I couldn’t catch my breath. I call Stephanie and turn my oxygen up to max but my oxygen saturation is still below 90. Normal people are 94-100%. I am definitely not normal. We call 911 and they are here in less than 7 minutes! Very impressive. They take me to the hospital right away and the ER doctor tells me to consider a DNR form. SCREW THAT! So I had a secondary pulmonary embolism way worse than the first. That was really close to death!
They put an IVC filter in me to prevent any further clots from moving up to my lungs. They also figure out the proper dosage of my blood thinner.
I get moved to SIMCU. It’s like a step down from the ICU. Now all this drama disqualified me from all the trials. Back to the oncology ward again, swab swab now wait. The doctors tell me chemo could kill me and they don’t want to pursue that course. I’m way too weak to take it. I want treatment dammit! So we push them to do something, anything! They hold an ethics committee meeting to discuss whether it’s even ethical to treat me in this condition. A large board meeting with lots of titles. They decide in the end to do it. They are going to treat this guy:
That guy is so frail and looks like death! Would you give him a cocktail of drugs that could kill him?
They keep testing my cancer and find a ROS1 mutation! They can use a targeted therapy drug that’s more effective than chemo! On the same day at the same time we start the first round of chemo and at the same time a Thoracic surgeon jams a needle into my chest to drain the fluid and let me breathe better. That actually works and I start feeling better. The new drug comes in and I start taking it and tolerating it well even though I’m still not eating properly. They discover another cavity in my chest with fluid that the first tube can’t get to. So in goes another chest tube. I’m starting to look like I’m in the matrix now!
I start to feel much better and they discharge me! I get to go home to this:
I start getting better and an entire year goes by!
*family fun montage*
Kids’ birthday parties, Severn lodge family vacation, my birthday, another Christmas celebration at our house, Trinidad!!, I coach Evelyn’s soccer team to win the season and second place in the championships!
My right leg gets this weird twitch where my big toe curls itself over and over and then my foot feels kind of numb after making it tricky to walk. What the hell was that? Ah well everyone gets twitches sometimes. It happens again next week, I think it’s from long term use of some of the drugs I’m on. That’s me refusing to admit something could be very wrong again.
My right leg quivers and twitches a lot. Not sure what triggers it. I tell my palliative doctor and they run some tests but nothing definitive shows up and they put me back on a drug I stopped to see if it helps. I convince myself it does and continue with my ignorance.
No changes but I still carry on.
I’m seriously considering going back to work! FNF has been an amazing company to me and I really want to go back! I also really like my coworkers. It’s a thing!
So I’m an idiot: go see a doctor!
Not trying to scare you, but don’t ignore symptoms of something you think might be serious! Really. Don’t.
I get these headaches at night and feel slightly nauseous in the mornings. I go for lunch at Seafood City with my homegirl Maria! I think I’m going to throw up and can’t really eat. Lunch was a failure even though the food looked really yummy! I love Filipino food!
The next day I wake up with a massive headache and I throw up. Stephanie calls it, we are going to the ER as something is definitely wrong. Too many things added up. They decide to do a head CT scan.
There are innumerable tumors in my head. One of them so large that it’s pushing my brain stem down my spine. Another one on my motor cortex causing the leg issues. This is serious and they admit me to the oncology ward. Swab swab.
They tell me that while the current drug was working well it does not penetrate the blood/brain barrier. There’s a new one that does and I should start that as soon as possible. Also now I will start high dose steroids to bring the swelling in the brain down to reduce the pressure in my brain.
They also want to remove that big tumor that’s pushing on my brain stem. I get referred to an amazing neurosurgeon at Trillium and he does a bang up job of removing that tumor (or most of it) without killing or disabling me.
Ignore the scrappy facial hair!
I spend a couple more days at Trillium, with the surgery being a success they send me home in time for Halloween to see my girls!
I get to go home to this:
Everything seems to be going fine. I have an appointment with my oncologist on the 22nd but then on the 24th I could barely walk. Then I had an MRI and the results showed everything got worse. This really knocked the wind out of me. I was so excited. So the new plan is radiation. Back to the steroid because you need the swelling reduced before starting. Also, another new drug, which is in trials in the States, but has received Breakthrough Treatment designation.
We start radiation the 4th and it ends on the 8th. Before every session I take an anti-nausea pill and then start the treatment.
What’s it like? Well first they fashion you a molded mask for your face to immobilize your head during treatment.
The actual treatment is painless and lasts less than 10 minutes, only 3 of which something is actually happening! (Some guys might find that familiar, wait what?)
You just lay there and lights flash around you. When I get home I’m usually very tired and sometimes it’s a little queasy. I barely eat much any more and loose weight. I weigh 162lbs when I used to weigh 205lbs at the start of November. Cancer is a GREAT weight loss program!
Radiation therapy is now over.
Time to go home and let it do it’s thing. It takes 1 month for peak response. Now we start weaning off the steroid but oh shit we do it too fast and I end up back in the ER after throwing up all day on the 14th. I go into the ER on the 14th and don’t get admitted until the 15th. Longest wait ever!
Back to the oncology ward. Swab swab. They hydrate me and just generally give me IV drugs. It was just like a little hotel vacation for 3 days.
These little creatures come visit!
They tell me that the issue was tapering off too fast so we are back to fulll dose! 16mg a day of steroids really mess you up. Causes GERD like issues and blood glucose spikes. So I have to take a ton of insulin like a type 2 diabetic. I measure my blood glucose 4 times a day. By poking my finger. I’m sorry actual diabetics, I know you all suffer your pain in silence while I whine like a petulant child. You guys are tough!
All this time I’m still waiting for my new drugs so nothing is treating the rest of my cancer. Only the radiation is doing it’s thing. (Which it is by the way!) But there has been some new growth in my lungs while we wait. The oncologist says that’s it’s a small growth and she’s overall happy with the scan.
MY NEW DRUGS ARE HERE AND I TOOK MY FIRST DOSE!
So there were many kind people that asked how we were doing financially with me not working. Some wanted to start a gofundme page to help us. That was overly kind! The truth is both of our companies are AMAZING in the way they treat their employees! When I was first admitted and diagnosed the president of our company visited me with more of the executive team and told me whatever I need to help just ask. These weren’t empty generic corporate promises, he truly meant them because so far he has more than stood by his word! Now I’m long term disability through my insurance. For this first you apply for CPP disability and then my insurer (manulife) pays me the balance of the maximum I can receive. Essentially I end up with around 70% of my salary which really isn’t bad. (I’m not bragging or tooting my own horn, but I’m happy with it. Just buy less shit)
As for Stephanie she’s doing alright for herself (the family). So we’re ok. Thanks for the concern though people, I’ll be sure to ask for donations when we do. Wait! You guys have brought us SO MUCH FOOD, it’s priceless!
The only one financial scare we had was my drug costs $10k a bottle or one month. My insurance company did not approve it at first. Both of our amazing HR reps for our respective companies got on the phone and worked some magic with them and in the end it was fully covered! Really unless you’re a millionaire, who can afford that? That’s $120,000 a year!
Some might be wondering how we managed this huge change to our lives. Well it wasn’t easy, but so many family members pitched in to help! Also Stephanie’s company is fantastic. They are so patient and understanding with her. She takes me to all of my appointments and takes care of the kids. A simply amazing woman! She also cuts the lawn and bbqs!
So in spite of it all there was a lot of good in the last year and half or so. First the outpouring of support was truly overwhelming! The world is currently pretty crappy, but you guys showed so much kindness it really made me cry. It’s amazing! One day I will get better and we will chill, so hold me to my word please!
My coworkers are spectacular. They all pitched in and bought presents for my family and I! That was insanely generous. Wow just thinking about it makes me tear up! Thank you all so so much, from the bottom of my heart! So many of you brought me food as well.
Also Stephanie’s friends (I consider my friends too, though some may disagree 😁) were so amazing and helpful to us. They are also amazing people! Seriously. All. Of. Them. I won’t list them all because they should know who they are and each other.
A couple great vacations:
All of this plus being there for my girls’ birthdays! I started cooking dinners for the family everyday and picking the girls up from daycare. I was almost normal! I really want that back.
I also start experimenting with the sous vide cooking method with masssive success!
I also met my dad and wrote a Facebook post about it. I’ll just quote it here:
“So while visiting Tobago I met my dad. Now I have to admit I was a stubborn ass. I had too much resentment in my heart and I refused to talk to or acknowledge him. I learned that he organized the hotel rooms for everyone and I still didn’t even say anything. He went out and got my family groceries for my kids and family and even brought us good rum! Yet I was still a stubborn jerk. After our trip was over I decided to go shake his hand and say thank you because it’s the polite thing to do. I always tell my girls that the most important thing in the world is to be kind and I didn’t do that myself. Now they didn’t even get to meet their grandpa on my side.
As I shook his hand and then walked away all I could think about is I wanted to give him a big hug. Go have a beer and talk to him. It’s something I think about very often now. So badly want to get better, go back to Tobago and give him a giant hug and have a meal and beer or two with him!
Life is too fickle to hate. I know that all too well now! I just want to love, I know it sounds sappy but no. I really really want this. I have no recollection of ever using the word “dad” and I really want that!
Bruce Wayne Hart I’m determined to come back and eat, drink and hang out with you!”
And now a timeline, so you could have pretty much skipped all of that incoherent rubbish I wrote…