My CAncer path
Even though some of us have been diagnosed with the same category or type of cancer, the experience is very different and unique for everybody.
This is mine.
My mom died of cancer when she was 37 years young. I was about the same age I was when I was diagnosed with cancer (38 years young) and when I asked and researched how long I would live, the average life expectancy was 4.5 to 5 years. But really it was unknown given the risk of the first surgery and the increased reoccurrence of cancer due to the radiation treatments I received as well as the trauma of ongoing surgeries.
I was told the risk of having radiation treatments would increase my chance of getting cancer again by 1,400%, but the "mop-up" work that it did (i.e. to catch anything the surgery might have missed) was important.
- My first major surgery was 14 hours.
- The surgery was nothing short of horrific. The procedure they did was called a bi-lateral mandibular swing, They cut through your jaw, down through your throat and around both sides of your the neck, they peel your face off, crack the (left) jaw and swing open half of your face. After they have removed (margined) the cancerous bad stuff, they rebuild your throat using parts of your left forearm. They also rebuild your arm using a part of your thigh.
- After the surgery I spent ten days with very little sleep, trying to "train" the new muscle tissues from my arm to swallow. Every time you swallow the mucus, blood and tissue – the sensation feels like ‘I’m going to die,’ because you’re actually choking yourself swallowing all that stuff. But it's part of the training program that will hopefully allow a better quality of life down the road. (Thankfully it worked).
- 249 permanent staples where also placed in my face to hold it together, a titanium plate fused across my lower jaw (where it was cut through). 88 lymph nodes where also removed on both sides of my neck.
- I woke up in an intensive care burn unit then transfer to a specialized respiratory unit. It was really scary being hooked up to tubes and trying to breath through a tracheotomy.
- My three boys visit me 3 days after surgery. They didn’t recognize me because I look like a monster due to all the swelling and tubes hanging off my head and neck. When Cooper, our youngest boy (he was seven) looked at me, he turned “every color of the rainbow” and almost passed out. It takes the boys about 6 months to be able to look at me normally, kinda of like to make sure it's me they are looking at.
- Radiation treatments to follow in five weeks. I'm told that it will be as harsh it not worse than the surgery. It was.
Surgery Side Effects:
- Tremendous swelling and the pain associated.
- Complete absence of normal sleep during my hospital stay due to breathing and other complications. I was afraid of not waking up due to choking in my tracheotomy, so didn’t fall into a meanignfull sleep for the first ten days.
- Need for constant injections of pain medications (morphine) and antibiotics to control infection.
- Speech was impossible while my tracheotomy tube was inserted, after it’s removal (day 8) simple communication was possible.
- Limited swallowing abilities came back within the first 14 days of surgery.
- Dental complications may require future treatments to the jaw area utilizing a hyperbolic chamber (intense oxygen) to restore lost blood flow in the jaw bone.
Radiation Experience: I didn’t do too well, still not fully recovered – I never will be, the damage is permanent.
Prior to the radiation treatment I had to have another surgery to remove some teeth with metal fillings that they forget to remove during the first major 14 hour surgery. (the metal fillings interfere with the radiation treatments) This was an upsetting, painful experience that could have been avoided – especially given that I was trying to recover from the first surgery.
- Seven weeks of radiation treatments.
- Radiation burns to my flesh and associated pain.
- Dramatic weight-loss, over 70 lbs.
- Difficulty in swallowing: inability to eat solids / swallowing liquids hurts: like I was “drinking or swallowing knives”.
- Stiffness in all effected areas / 24 hour a day pain.
- No taste for a while, no desire or ability to eat without a lot of mental preparation/ritual.
- Fatigue loss of energy.
- Loss of saliva.
- Hospitalized for part of June and most of July at the Cross Cancer Institute. I was placed on the 3rd floor one bed down from the Palliative Care Unit. Many of my friends who visited me didn’t want me to suffer anymore and couldn’t understand why a human being would have to go through this. They honestly wanted me to “rest in peace” and pass on. It was described as going through “hell”.
- My care included 24 hour a day pain medication, monitoring, nutritional guidance and support, occupational physiotherapy & psychological support.
- I learn that my disability pay is reduced from 66% of my salary to less than 20% because the underwriting insurance company “lost or mis-filed a piece of paper” that entitled me to my full benefits. I don't have the energy to call a lawyer to fight a big insurance company.
- I can’t even pay for morphine or other medication I need, let alone feed the boys. Celebrating special days like Christmas is tough, so are birthdays.
- From 2003 – 2012 we live week-to-week, sometimes day-to-day and I’m broke most of the time and can’t work often due to the interruptions of ongoing surgeries. I rely on Nick, my common law wife to be a constant source of income and support. I borrow money and receive gifts ("pennies from heaven") from friends; family and even a few doctors helped me out.
- Struggling financially I refuse to give up and continue doing some charity work in the community, hoping and praying that somehow things will be o.k. at the end of every month. Helping others gives me some self-worth, strength and a reason to live.
- I participated in a few clinical trials (Dr Margie McNeily) that test the efficacy of exercise and strength building as a means to reduce traumatic pain that head and neck patients experience as a result of the surgery and radiation. Because the neck muscles have been severely compromised by surgery and radiation (damaged, misaligned, etc,) we often experience dramatic cramping that feels like you are having a heart attack in your neck.
- These cramps occur with more frequency when you are stressed out, often 2-3 times or more per week. You are thrown into uncontrollable and debilitating seizures with a sharp pain that shoots through your neck and up to your brain. You can't move or breath and if feels like you're going to die. It is especially tough when it occurs in front of other people in social settings.
- After participating regularly in the clinical trial and experiencing a big improvement to the reduction of these seizures, I commit myself to a life long fitness regime to improve quality of life as well as to avoid the obvious pain. It also helps with my mental health and improves breathing complications.
More Bad Shit: How many times can you actually go through hell? Seriously.
I lost my disability pay completely. I went back to work for a short while (less than 3 months) and then had to deal with more surgeries (eight of them). I learn later on that >95% of people who experience what I have – never return to work. Far greater than 50% of us die within 5 years. I wish I would have known this before I permanently lost my disability pay, which is what happens when you return to work if only for a brief time.
My loss of saliva is permanent. The day I went off of morphine – it completely disappeared. The Saligin pills and clinical trial failed and was suppose to be 89% effective. It wasn’t.
Morphine withdrawals where not fun. I can’t even move off the coach to get some food when I’m hungry or physically get out of bed. The nightmares are horrible and the loss of control of your body is devastating.
Over the course of four (4) years my jawbone deteriorates and I lose all of my teeth. My facial appearance starts to change, I look and feel like “hell” on most days, old tired and not well. Without teeth impacting my jawbone, it will eventually deteriorate, quality of life parameters would diminish, nutritional needs would suffer and the risk of cancer cachexia and the like would threaten my life. So a long-term maxillofacial reconstruction process begins to prevent this from happening.
- Eight (8) more reconstructive and maxillofacial surgeries and countless procedures are required over the course of seven years to deal with my deteriorating jaw, head and neck area. I am lucky to live in Edmotnon where we have the best team of head and neck doctors, maxillofacial reconstructive surgeons and caregivers (iRSM clinic and U of A) in the world.
- HBO Treatments 3.5 hours a day. Each surgery requires a min of 10 pre and 10 post “dives” for each surgery. Sometimes we did a 20/10 protocol. They help with healing from the surgeries but take up most of the day. In total I spent over 180 days in a tank over the course of 6 years.
- I experience difficulty speaking. Speaking takes a great deal of energy and concentration given the removal of core throat muscles and structure, part of my tongue as well as the total loss of salvia and teeth. Sometimes people think I’m drunk or just got out of bed.
- Irregular sleep patterns due to dry mouth and loss of saliva. Because I drink over 30 glasses of water everyday, I usually wake up every 30 minutes to an hour at night to go to the bathroom.
Based on my permanent “sleep deprivation program”, my concentration, focus and motivation to do basic things is highly compromised. So I make art, which puts me in a deep meditative state, which also saves us the cost of pain medications. I have inconsistent success selling art and am lucky to sell 4 to 5 pieces a year, but am able to donate my art to help various charities and causes. This makes me feel like I have some self-worth.
Every time I try a new start up idea or business venture they fail due to interruptions of ongoing surgeries and procedures as well as burning out from trying to just do day-to-day normal activities while healing. The accumulated effect of sleep deprivation also translates into at least "one lost day a week" where I am completely dysfunctional. Doing normal things like trying to drive a car or write a coherent sentence are impossible.
I often feel disconnected to the outside world, socially isolated and depressed. From time to time I get invited to speak to groups of medical students, doctors, healthcare givers, cancer survivors and families and at charity fundraisers. Despite the challenges with speech it also helps with my negative mental state and provides hope for others facing cancer. It also helps to get me out of the house.
The New "Normal"
The social impacts of surviving head and neck cancer can be devastating. While surviving this type of cancer can clearly be defined as success, it is often just the beginning of a long and painful journey.
I always remind myself that I get a chance to live and there are people and especially children in this world who have far greater challenges and hardships then most could ever imagine.
Treatment and side effects for this type of cancer leaves patients with severe long-term issues. Eating or speaking becomes difficult or impossible. Indeed I’ve been medically classified with a long term disability in both regards. We also become isolated. We lose our jobs. Our families can break apart.
The physical pain of cancer will never be gone. The emotional pain is worse.
Not even the strongest of medications can help with the isolation you feel as a result of treatment and the long term battle to try and be “normal”.
Despite all I try to do to keep my mental health “boat floating” i.e. the workout routine, the community giving, the positive outlook and connection to others, I often feel like I’m losing the battle. I have days where I just want all of it to end. I know what losing all hope feels like.
I think we can blame it on the superman t-shirt. It was my fault for not knowing my limits and maybe trying too hard to be normal. It's ok to be strong and resilient and put up a good fight, but it’s even more ok to recognize your weaknesses and maybe even how vulnerable you really are.
Anyway, here’s my new “normal”
I have Dysphagia (swallowing impairment) which is a complex medical condition with potentially serious consequences including malnutrition, dehydration, airway obstruction and pneumonia, reduced rehabilitative potential, quality of life and social isolation.
- I have a constant choking pain, like someone glued a thick rubber band around my neck or someone is trying to slowly choke you to death. This sensation will never go away, its maddening at times, however I have developed coping mechanisms like making art and working out in a group like community settings which temporarily distracts me from the pain.
- Constant knife-like pain in my right throat every time I swallow. It temporarily went away a year ago but it's back again. This sucks because it's just one more thing to throw on the pile – the pain is so bad it also keeps me up at night.
- Seizures and cramps in the neck (as noted in the above paragraphs)
- Severe sleep deprivation. Yep 14 years of unhealthy sleep patterns have really bad side effects. (as noted in the above paragraphs)
- Loss of confidence and self esteem because it’s really hard to do “normal” stuff and function when you’re super tired all the time. (I believe this actually makes me a better artist because you can’t think– you just “do”)
- Catch 22 choking situation. I need to chew/eat food to keep the jaw bone healthy but it’s a constant source of stress knowing that I can choke if I’m not careful. We’ve had many 911 situations and it can be anything like soft pasta or a piece of spinach that shaped and stuck itself to my epiglottis. When this happens you can't breath at all. It's a terrifying experience. My wife Nick has seen me first hand deal with these life threatening choking episodes. It feels like a electrical string running up your legs into your heart and gut. You have zero control. Your breathing just stops and your only thought is – will I live?
- Speech. I still often struggle with speech especially when I'm tired.
- Financial pressure.
- Mental health challenges from dealing with all of the above plus some other crazy shit too painful to write here.
How to overcome the above? Just keep moving my body/working out, connecting with others and making art. It's also very helpful when I create or get involved in mid to long term projects, especially projects that have a purpose to help others in need. This "forces" you to be held accountable for their completion and also reminds you that there will always be others who have far greater challenges than you.