Today I lost my dad. He died this morning at 7:35 am. Thank you for everything dad.
Seeing life slip away can be beautiful. It has a big impact on the willingness for honesty and there’s a dramatic shift towards being authentic. Why pretend anymore? There’s a big difference between having 6 and believing you have 500 and knowing you have 6. When you know you have 6 you’ll enjoy them fully and you’ll not let anyone take any from you.
And I suppose that we all think we have 500 so we float along enjoying some, sharing others, and allowing some to be stolen from us.
Cancer is greedy. It takes more than it’s fair share of the 500. It takes more than what we let others steal. But it gives something in return those who steal do not, it illuminates the end of the timeline. The flash of the terminal diagnosis shines brightly on what you have left so following the path to the end is very easy. You clear your schedule of the stuff that steals any of the time that remains.
You call in your troops and they shield you from the nonsense. The family pick to block obnoxious one on ones, musical chairs to maintain the wall of one between the cancer and the cancer, it’s a play book being written with each visit from someone who never mattered to us and always seemed to cost us energy.
It’s a sad sort of dream team simply because it is needed.
I’ve been left wondering after a well played game why I’m in this situation and what other things have I been letting into my life that share the same root cause.
I really want to be liked by other people. At least I used to want this. I’m not sure it’s worth the cost anymore; not to assume it ever was. I’ve normalized this habit though. I’m more aware of the interactions with people that leave me feeling unsettled than I am about the ones that leave me feeling nothing. In the last 3 years I’ve started to tread away from these types of interactions in favor of ones that leave me feeling good but I still have a tough time telling people to get away from me or just ending “friendships” that never worked.
The new awareness that death comes sooner and that time becomes more valuable as you near the end is forcing the issue about the pointlessness of wanting to be liked by other people. Almost everyone I know now will not be there when I die. The people I am choosing to generate mental friction about are not even aware of it and none of them will be there in the end. Wanting to be liked isn’t working for me anymore so I’m giving up on that habit. It hasn’t been authentic for a long time.
How Doctors Die: It’s Not Like the Rest of Us, But It Should Be by Ken Murray is a very interesting article about how doctors respond to the news that they are terminally ill. It goes into the costs associated with keeping someone alive when their bodies can no longer keep the disease in check – financial, social and suffering costs.
One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.
Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.
But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.
The author recaps a number of stories about doctors who get the news and simply stop working and spend their remaining time doing things they like that make them happy. He feels that for many of them, having seen the suffering caused by futile care for years, the choice to just say “no thanks” is not just easy but the only choice they can make and still do no harm to their patients (in this case themselves).
The article reminded me of doctor Mark Greene in the TV show E.R. He had ended up getting cancer and having a new wife and a young child he fought it and beat it into remission. It did however come back and he made the choice to not fight anymore. It had been hard and he didn’t want to do it again. Dr. Greene spend his dying days in Hawaii with his family and died peaceful in bed.
When I watched the show I remember thinking that it was odd that a doctor would choose not to fight again given that he had been successful the first time. But there was also something that resonated with me that sometimes the distinction that you have a battle to win is simply not true. Even if you are not sick, you will never be new again. Your body has been falling apart since you were born. If you are sick, you will never be cured, even if they cut it out, zap it with radiation and stop the bad cells from dividing. Getting cancer is a one way street and no matter what they do, it can come back. You can fight the toughest battle, but without a new body, the old one has that weakness and the cancer has time on its hands.
There isn’t anything wrong with fighting, there isn’t anything wrong with wanting more time for yourself or your loved ones. There isn’t anything wrong with being grateful for the warning and having the time of your life as it winds down. That’s what a lot of doctors do and I get the feeling it’s what most of my dad’s doctors would do.
And it is really tough to hear anything other than “dead soon” in those words. That is the acute emotional reaction to news of a brain tumor in you or someone you love. But the symptoms of the disease are treated, they go away, the mind returns and you then get to the business of what to do about it.
You cannot predicate the future so the doctors say weeks to months. The doctors that have the tools to do something about it – radiation, chemo or surgery – have more optimistic predictions as they have some power to cut out, kill or retard the tumor cells ability to replicate. The rest of us float in a fog wanting it all to be a dream.
But the doctors can’t predict the future so they have to say weeks to months. 5 years is 60 months and there’s a 4% chance of that. They encourage you to get your affairs in order because it’s just good practice and because it forces the family to have the conversations that are easy to avoid otherwise. Being alive in 5 years is a possibility. Being alive in 1 year is a good likelihood. Feeling better than before being diagnosed is an almost certainty with treatment. But the decision to undergo treatment needs to be made and it should be made with some level of understanding of what the treatment is like.
I happened across a site by and about a guy named Ted who was diagnosed with GBM in 2006. An interesting first hand account of what it is like to get treated and to live with a non-growing tumor in your body. I particularly liked a section written by his wife:
Personality Changes: Ted’s attitude had gotten really bad right
before he was diagnosed. He was angry all the time and kept telling
me he had no passion for a cause anymore. Fortunately his anger wasn’t
directed at me. He seemed to be angry at the world but at the same
time he felt numb. He went from the energizer bunny to not wanting to
see anyone or go anywhere. At one point, I asked him what he had
done with my real husband.
The day before he was diagnosed I actually told him I thought he had a
brain tumor. So I wasn’t as shocked as he was when the doctor told us
that he did.
Mood swings: After surgery the doctor predicted mood swings. I was
really concerned. He did have a few, but as he has healed, the mood
swings have virtually disappeared and he has gone back to pre-tumor
behavior. I have him back. It’s wonderful. I will always be
grateful to the surgeon for bringing him back to me.
Having seen a lot of the passion my father had for live disappear over the last 6 months it’s reassuring to read that it is cancer. The foundation of the world shakes when one of your mentors seems to give up hope for anything. It’s nice to know that the hope and passion are still there, they’re just being blocked by a tumor.
Today was the first visit to the Juravinski Cancer Centre in Hamilton for my dad, with my mom, brother and me. This was the first time I had visited a cancer center and the last few weeks are the first time in almost 30 years that I have actually given cancer much of a thought.
I like the center. It’s clean and it was warm and I had the thought that it would be a comfortable temperature in the summer. There is a hospital like feel to the place and there’s no mistaking that you are in a health care facility. Missing though, thankful, was the chaotic semi-shell-shocked movements and anguish you get from the masses in emerge. At a cancer center everyone is there for a reason and everyone inside the building knows it. It’s all about the cancer and the people it’s killing.
The way this place worked today was simple. It’s a clinic and there are a team of doctors and health care providers who are specialized in cancer treatment. Our team had a neurosurgeon and a neurologist because of my dad’s diagnosis of Glioblastoma multiforme or GBM (brain cancer) – I would imagine that they’d have a specific type of surgeon and specialist for different types of cancer – along with an oncologist, 2 radiation doctors and a nurse.
The nurse introduced herself, chatted and collected a detailed health history, current medication, information about how my dad ended up in the hospital, symptoms, and she asked for any imagining that had been performed. She asked if we had any questions and left with the CT and MRI results.
The oncologist was next, he came holding, among other things, a picture of one of my dad’s MRI images. He chatted about about the key stuff – the last 6 weeks and ultimately what the neurosurgeon has said at the hospital 2 weeks ago – GBM, a brain tumor that cannot be removed. This doctor agreed. He showed my dad the MRI and pointed to a thing in the center that doesn’t look like anything else on the page.
He preformed a complete neurological exam and explained the next hour. The team of doctors would meet and review all of the information and then would be available to discuss the opinions on treatment and the prognosis. “Come back to the same room in about 30 minutes.”
He was nice, like the nurse. It sounds silly to say “nice” but that’s what they were. Try walking into a room with a time bomb, hand it off to a family, and still have them think you were nice. It was completely professional and if it hadn’t been for why we were there, I think we would have talked about how nice the whole thing was while we waited to hear what could be done about it.
Some food at the cafeteria / lounge that had a piano but no singer. The family chats back and forth about stuff. I’m looking around and starting to feel strange because as I look at each group of people I’m trying to guess which one of them has cancer. If you haven’t played this game, you don’t really win when you guess correctly. There’s a table of 3 people, one is dying, the two that aren’t are going to be grieving their asses off soon. You can’t guess who is who without looking at their faces and when you do, you see a 21 year old son with his mom and grandmother, mom’s in a wheelchair because she has cancer. I felt rage deep inside that made me want to wreck something for what’s about to happen to this poor kid. I suddenly wonder what type of cancer killed the cafeteria singer and as I do, my eyes meet Des’ and he’s just seen the kids future too. I glace away towards my dad unwittingly winning another round of the stupid game my brain is playing.
We head back to the room and the doctor returns. He presents the treatment options. The tumor cannot be removed so my dad will never be cured. If he wants to fight it, they’ll remove as much of the tumor mass as they can, give a course of radiation and chemo, some recovery time and then more radiation and chemo. He’s free to do nothing about it, and that isn’t an unreasonable choice. The nurse and doctor spoke candidly about GBM and what’s in store when you battle it. Your life lengthens by months. But they have to open your skull and cut pieces of tumor out while avoiding causing serious brain injury. The goal of this is to create enough space for the swelling caused by the radiation and chemo to fill without causing cognitive impairments.
The fight is brain surgery, then radiation and chemicals to kill cells. Give the body some time to recover from all of the trauma and go at it again.
It’s reasonable to say no thank you because it can be a rough ride, with no guarantee of doing much. And there are no halfway measure. You’re 100% into the fight or you are not. It’s becomes a philosophical issue more than a problem to be solved by science because with cancer, the science isn’t strong enough to offer guarantees. You throw the kitchen sink into the battle or you don’t. Either way, you are now dying from something.
The team of doctors came in and answered all of our questions. They removed the shame from making any choice while offering 100% of their focus to fill their piece of the treatment puzzle. Again, it was really professional and the conversation was honest and caring. The time-lines are estimates, the tumor is serious, the treatment is not a cure and it can be rough. Consider your options and we’ll talk next week. After the thank yous and the goodbyes we head home and they go to meet their next round potential soldiers in the fight against cancer; which is good because these are the type of people you would fight for and they are also the type of people you would not feel bad saying no to. They made it clear that there is only one right choice and that just happens to be the one that my dad will make.
I’m not sure if I’ll ever be back to the Juravinski Cancer Centre in Hamilton. Right now that’s up to someone else. But if I go back it won’t be with a sense of trepidation or fear because my dad would be in good hands there.
I have never really enjoyed sleeping in the afternoon. For one thing, waking up the second time is tougher. For another, the quality of sleep isn’t of a very good quality for me. But the main reason why I’m not a fan of afternoon naps is because of the hypnagogia phase of this type of sleep. This state always kind of bothered me because the imagery of dreams doesn’t tend to happen here and you get a raw stream of clear pictures and dialogue about EXACTLY what your brain is processing.
A couple of weeks ago, a Tuesday afternoon, I had a dream were I was telling someone that my uncle Kevin (oldest brother on my dad’s side) “had gotten it from exposure” in reference to his cancer. In the dream I was attempting to create a logical difference between my uncle and my father. As I drifted awake I became aware that I could hear my parents talking in the computer room. I wasn’t able to make out what they were saying, but the tones of their voices was causing me to come awake with a touch of anxiety. “Are you having a stroke?” I hear my mom say. “No” in a soft relaxed tone is my fathers reply. I’m now standing looking at my mom and dad. I ask my dad how he’s feeling, go through the stroke check list and there’s nothing alarming. He’s fine. His thinking is seems a little off, but not really. It’s tough to tell to be honest. A few days later, after returning from the doctor with my brother, there’s a change to his medication for his heart rate and a “there seems to be something I’m not getting” from the doctor. The next day he improves so the crisis ends.
Sunday my dad is thinking a lot more clearly but his stomach hurt. Monday he’s tired and not feeling so good. It looks like a stomach flu, a fair possibility. I take an afternoon nap. Out for a short while I wake-up hearing my mom say “we need to take your dad to emerge”. And off we go.
He gets a CT scan, there’s something in his brain that shouldn’t be there so he’s transferred to Trillium Health Sciences (Queensway / Hurontario) Mississauga’s neurosurgery department for an MRI to find out what it may be. It’s around 11:30 am Wednesday when he gets back from the MRI. He’s sleeping and his vitals are normal. I take a some time to research brain tumors on the internet.
Turns out brain cancer as a primary tumor is rare. Most brain cancers are a result of a cancer spreading from a different part of the body. Brain cancer as a primary tumor is rare in people above 70. There is a genetic link, but that accounts for 5% of it. My uncles bone cancer was the result of exposure at work. My dream from the week before was starting to settle very unpleasantly on what was suddenly become a new reality that was hard to understand and manage.
When the neurosurgeon gathered around the family at 5:40 pm and said glioma my heart sank.
Now what does this all mean? The hypnagogia phase is a possible gift of insight for a lot of people. What I did with the information that I was given the week before the cancer diagnosis is sort of a mystery. I didn’t say to anyone “my dad has cancer.” You don’t say that unless it’s true and I didn’t want to be right about what I had felt in the dream. I did pay more attention to his movement and the things he said, but other than the stomach pain he was improving. To the best of my knowledge, I hadn’t considered the possibility of my father having cancer before that nap. But the thought had been present and working on my brain for 8 days before the doctor said it.
The family is stunned. My dad is 68, hasn’t been a smoker in years, rarely worked with PVC (the only chemical conclusively linked to glioma), is active and healthy, and has always had a fantastic brain – a natural problem finder and solver, an ongoing learner and an articulate communicator. It just strikes me as a little unfair that everything about him is still in great working order, that he’s taken care of himself, his body and his mind and now as he begins to enjoy his retirement his genetic code presents this new challenge.
I’m not sure when I’ll take another afternoon nap, I suppose when I need some more of that hard hitting unfiltered clarity that my conscious mind can’t seem to draw out.
Inspired by Chris Brown’s What I Learned At SST, here is part 1 of my list of the top things that I took out of my time there:
- Talent is obvious but training is necessary. You can tell an athlete by watching them move and you can predict performance based on how a person performs certain tasks. While their gift may be sufficient to help them get pretty far in sport, they need training to achieve the highest level. If a person does not have talent, they are fighting an uphill battle to make their mark; drive can make up for the talent gap, it just doesn’t happen very often.
- Drive is a shared characteristic among high performance athletes. Regardless of talent, all athletes who want to perform at a high level are incredibly driven. Most of the athletes at SST had exceptionally high drive and this made working with them a breeze. They did everything they were told, they applied the coaching suggestions whenever they could and they pushed themselves to improve. There were a few that required more motivation and it was fairly obvious to the coaching team that these individuals would not enjoy the same level of success as most of the others. Watching elite athletes train made me feel more comfortable with my own training style as I enjoy working-out with a lot of intensity.
- A trained body adapts to changes in training very quickly. Larry, the owner, would say that an athlete should never do the same hamstring workout more than once every 4 weeks. His mentor Charles Poliquin says that the body adapts to a particular workout after 6 times. Both of these points of view come from working with elite level athlete so one should keep their training and skill level in mind when they are designing their own program; but the essence of what they are saying applies to everyone. No matter what you do, the body will adapt to it in an attempt to make it very easy and cost effective. This is why people need to change their programs frequently in terms of reps, sets, movement speeds and movement patterns. The more trained you are, the more frequently you need to change things up.
- A good base of structural balance should be achieved before proceeding to loaded resistance training. Seems obvious but most people including myself don’t go about it this way. Instead we work on building muscle and only start to fix the imbalances once the injuries start. The fact of the matter is that someone who is well balanced will have much better movement patterns which will result in fewer injuries than someone who isn’t balanced.
- People make working at a job either fun or work. Work is what we do to make money that frees us from having to make and grow everything we consume. It’s a necessary evil in life. However, how we engage work and the level of satisfaction we get out if it is impacted a lot by other people. This is not to say that we don’t choose our own attitude. I’m just saying that it is easier to say happy when those around us are happy. The dark cloud will bring down the moral of a successful organization faster than anything while a failing company that has happy workers will be a fun place to work.
Part 2 will be coming in a few days so stop back and check it out.