Day 299 – the ‘ring theory’

December 14, 2018We were supposed to go to Vancouver for the weekend. However, something niggled with me about my leg. It was feeling very tight and itchy, especially night. I didn’t trust it. I also didn’t really want to go. The closer I get to death the more I find myself pulling inward. I don’t want to go out and having people over is difficult.

Explanation

A great article appeared in Psychology Today I am going to pull the lid off the can that most people with serious/terminal disease face and that is having to console people that we are going to die. This is not at all appropriate. We need you to be strong. I don’t have the energy to or the ability to be your rock while I am dying. If you think of each ring as a group of people the immediate family, extended family, close friends etc.⁠1 At the centre, is the person for whom the even it is happening. So, in my case, I would be the person in the centre, Deb, Angelina and Joe on the next ring etc. The idea of the ring is that people on the outside layers feed comfort in and those on the inside layers get comfort from those around them. The best example I have is when my mother died. My sister’s friend Sharon was then. After my mom died, she kept going over and picking her up and hugging her and dropping her back to the bed saying how nice, generous and thoughtful she was. Now, anyone who know my mother knew that she was none of these things. It disturbed me to no end that she continued to do this. She would throw my mother’s body down and there would be a perceptible bounce. I told Kathy to get Sharon out of there. Sharon was more aggrieved than we were, If were all broken by my mother’s death. The situation above could/would of gone very differently.⁠2

Here is the ring:

Screen Shot 2018-12-17 at 2.11.47 PM

 

To me, this graphic made so much sense. I have often found my self comforting others when something bad had happened to me. Part of this is my personality. I learned to compartmentalize things in my mind so I could get through just about any circumstance without losing it. It was also a necessary skill in my family. I would have to put my tears away until later, much later. 

In Practice

If you know someone who has a family member who is dying offer to make some mears that they can share or use themselves. Volunteer to clean the house. Chances are likely they are spending all their available time with their relative. 

Limit your visits. I had a great visit on Saturday with some friends. But I could barely keep my eyes open. If you want to come over and do something⁠3 then stay as long as you are need. The max I seem to be able to concentrate is about 30 minutes. 

The big problem that happens in this situation its that well-meaning people say call me if there is something they can do. I tried this once over the summer. Not only did they not show up, they didn’t message etc. So make specific offers – “I make the best lasagna. Can I bring a pan over?” The reason I am not going to answer this question is anymore is that it makes me vulnerable. In this case, I thought I had a problem solved and I didn’t. It makes much more work us than is needed.

Conclusion

Know your place in the ring in the situation. Are you a co-worker of someone who’s partner is dying. Unless you’ve become a member of their chosen family, you are way out in the rights and you could take a casserole, mow the lawn, clean the house etc. The ring theory also helps people know where they are located it in the complex experience of grief.

Oh, and in other news, I ave cellulitis again!

 

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1 You can customize your rings.

2 Deb make sure that Sharon is far away from me when I die.

3 Cook, clean etc.

Day 290 – the ‘why I chose MAiD’ edition

December 14, 2018I have received many questions about why I chose MAiD⁠1 to end my life. There are myriad reasons I could quote but I will try to keep it tight.⁠2 

  1. I have already been sick for 13 years with ulcerative colitis. I simply have no energy to fight another disease. 
  2. Chemo therapy was very difficult.⁠3 Chemo on top of ulcerative colitis and IBS made my bowel very unhappy. The pain I went through while on chemo was really bad.
  3. I am prone to weird side effects/outcomes. Once I got cellulitis, I knew it was the beginning of intrusive and painful medical procedures. Just this one visit to the ER resulted in a chlorhexidine burn on my port site where I had to get IV antibiotics for a week.⁠4 They had to use iodine to clean my site for further treatments.
  4. I was developing neuralgia in my right hand. It was annoying after getting carpal tunnel surgery. At least it’s getting better now. I couldn’t do up a button a month ago.
  5. I was diagnosed when it was already too late to do anything to cure my cancer – it had already metastasized to my lungs. 
  6. In addition to the tumour in my right breast, I also have inflammatory breast cancer on that breast. That was the symptom I noticed first that sent me to the doctor.
  7. Even though I was having trouble with my lungs had I pushed it with my doctor they would have found the metastatic tumours and it still would have been too late.
  8. After all the medical stuff I have dealt with in my life, I have serious case of medical PTSD. Every time I had to go in for a scan or treatment my anxiety would skyrocket.
  9. I would rather go off treatment and be aware of enough to enjoy some time with my family before I die.
  10. I really don’t want to whither away and to continue to live in pain where basic mobility is a problem.

tl:dr No one is wiping my ass.

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1 Medical Assistance in Death

2 Rosie – sorry for the list and the footnotes in the list.

3 I am sure it’s difficult for everyone.

4 Ever had chlorhexidine or alcohol on an open wound? Ya, painful.

Day 289 – the ‘I don’t want to die’ edition

December 13, 2018
Life fucking sucks

I do not want to die. My life was to the point where I was able to do what I wanted to for the first time in my life. I have spent most of my life looking after people like my mother and others in my family. I have had a very rewarding career of service to other people. I have a wife whom I love very much, Angelina basically our surrogate daughter and all my dogs. My life was finally at a point where I could make decisions that benefitted me; I was finally going to have a chance to do what I have always wanted. 

Having advanced cancer makes me want to die. I know what’s ahead of me and I don’t want it. I can see where this is going. Everyday gets harder. I sleep longer, there is less I can do, my pain levels are higher, I have no appetite and a lot of difficulty eating.⁠1 I am now eating about ¼ of what I was at the beginning of the year. 

I know that my death will be devastating for my chosen family. So, this is a choice I am making for me. Much of my life, I have spent being uncomfortable or doing things I didn’t want to do so that I could please other people. I would never tell anyone⁠2 how hard things were for me. Everyone just assumed I didn’t like the theatre or concerts or things like that as I never wanted to go. The bottom line was that I never fit in the seating. I would get bruises rather than trying to get a chair without arms. So many things.

I had always wondered what my death would be like. And now, I know. I will die at home, surrounded by people and dogs who love me. It will be a good death.

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1 Breakfast is really the only meal I can get down with any certainty.

2 I only started telling Deb how hard things were for me after reading Hunger by Roxane Gay.

Day 288 – the ‘daily drudge’ edition

December 12, 2018
Us at the hospital waiting to see the MAiD doctor

It’s not hard to tell that I am sick. Really sick. I am up for only about 8-10 hours a day and I am exhausted. By the end of my day, I am coughing like crazy. I think the tumours are returning with a vengeance. I have no appetite. I can generally eat breakfast but that’s about it. I am finding it more and more difficult to do things like cook or carry things, even getting up the stairs is getting really hard. Mornings are the hardest. I wake up crying almost every day as things get harder.

We are going to spend most of the weekend in Vancouver at the Sheraton Wall Centre so we can connect with people who are in Vancouver and can’t get out to Maple Ridge. I will have my power chair so we are mobile!

 

Day 287 – the ‘January 7, 2019’ edition

December 11, 2018
Practicing radical acceptance

Things are starting to get real now. I now have my MAiD⁠1 date – January 7, 2019. One of the things I often do is reflect back to where I was a year ago. I was tired this time of last year. I’d been going full out for months with the consultation and the conference. I was not particularly happy with my work situation. I really wanted to strike out on my own and become a life coach. I have been coaching and mentoring people for years – probably since I came out of the womb. I finally had the financial resources to be able to take a couple of months off and start building a practice. I intended to do some non-profit consulting and, if I was really desperate, grant-writing.

After my 2 weeks off at Christmas all I could think was that I needed 2 more weeks. I was also having trouble breathing. I thought my lungs had been activated by the forest fire smoke from the summer. I think this was when the cancer was brewing. It would still be 2.5 months before I got the symptom on my breast. I had been to the doctor and told her about the asthma being much worse than it had been in a long time. She had checked my chest but there was no wheezing and that was as far she went. It wouldn’t have mattered anyway, the tumours in my lungs were a metastasis from the main tumour in my breast. It still was too late.

Given that there is not much they can do to treat my cancer⁠2 the side effects are not worth it to me to live a bit longer and sicker. I simply don’t have any fight left in me. I have used it all up. A couple of people have wondered how I can look so well but be eligible to end my life.⁠3 I really wish there was another alternative but there isn’t. I can do it now, under my own steam, or I can suffer and wait for it to come naturally.⁠4 It will take a long fucking time.

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1 Medical Assistance in Dying

2 Triple-negative

3 Why is it that people think they have a right (or that I would care) to comment on my medical decisions. They are made with due care and consideration with those who love me.

4 And given that I gain weight when I can’t eat we may be here for a long time because I have no appetite whatsoever.

Day 286 – the ‘knowing the unknowable’ edition

December 6, 2018The one thing that has been certain about death is that we never knew when it was going to happen. Doctors have been asked, for as long as there have been doctors, how long until s/he/I die? And for all the education and science they have learned they can only give a slightly more educated guess than the priest or internet psychic. The closer someone gets to death the more accurate the predictions become.⁠1

I don’t have a date yet but I will be setting one soon. It will likely be in the first part of January. That allows everyone to enjoy the holiday season without me impacting their plans.⁠2 For me, it’s about having some level of certainty and a date gives me that instead of waiting until the absolute last minute when I really can no longer do this thing called life any longer. We will meet the 2nd assessor on Monday after I have my port flushed.

Knowing when you are going to die is kind of an odd sensation. There are a few things I need to do and I just keep procrastinating. I have always worked best under a tight deadline. Deb and Angelina have just gone to make the beginning of the funeral arrangements. Apparently, if the death is anticipated then the paramedics can be skipped and the funeral home people can just come and get me. Much less stressful on the day for everyone involved.

I feel better having a ball park of when it’s going to happen. Our Christmas plans remain in place and all is good.

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1 Of course if you keep saying it will happen tomorrow, you will inevitably be correct and you will be able to say that you knew it all the way along.

2 Apparently doctors need vacations too.

Day 285 – the ‘why I hate emotion’ edition

Up until now, for the most part I have focused on the logistics of dying. Wills, forms, and so many decisions to make. Much of this stuff is relatively easy for me. I am an administrator at heart and nothing makes me happier than seeing a pile of paper that I have processed.[1] When I worked for the ministry, I would take other people’s stubs[2] and plow my way through them. I totally enjoyed it.
Then there’s the emotional piece of it. I am not so good with the emotional part of life. There are many reasons for this, particularly stemming back to my early life. I was left too languish at the Grace Hospital for 4 months until was adopted. Memories of my early life are sparse.
I remember one night my dad cooked us corn pancakes, sausages and bread fried in the sausage fat. My mother got so mad at him because it was such a horrible meal. We didn’t really understand but it was shortly after that meal that my father left. He didn’t go too far away.[3]
Single motherhood did not suit my mother. It was hard. But she put on a brave face and she went to work every day to support us. I never say my mother miss a day of work. I attribute my work ethic to her. It was the 1970s and single parents were just starting to become more common. The problem through this part of my childhood was that I was responsible for a lot of stuff: making sure the house was tidy, dinner was on its etc. If any of these things were not done she would explode into an emotional rage. I would try to fix it and I would end up on the receiving end of her rage of emotional and sometimes physical abuse. As a seven year old child, I was left trying to figure out what would work and what wouldn’t. How could I please her? Give her what she wanted? Sometimes I would get it right, others not so much. I would try to reason her or explain why something was not done or ready on time or why the house was a mess. Invariably, she would yell at me and I would cry and I would be verbally abused for being ‘weak.’
The age of seven was a very bad time for me. In addition to my mother divorcing my father, I was sexually abused by my brother who was 7 years older.[4] Luckily for me, he would later be arrested and be given a federal prison sentence.[5]
I am telling you all of this as it helps to explain why I avoid emotion. I have determined that it’s pretty much impossible to go through cancer and dying without bringing in emotion.[6] Not only there is emotion but there is also my almost constant need to please people. I don’t want to upset anyone by the day I choose. We have been doing a lot of talking and crying as we all try to figure out the best way to manage this process.
I am feeling quite guilty about going before Deb. It was always our plan that Deb would go first given her MS. This is really having to cause a massive shift in thinking as to what the future looks like.
In terms of MAiD itself, I am not afraid to die. The only emotion I really have attached to it is saying good bye to those I love. I feel bad for the pain my leaving is going to bring them but there isn’t anything I can do. Dragging out my suffering dying is not going to lessen any of the pain. In fact, it will likely make it worse. There will be logistics to be sorted out between now and the day it happens.
What I do know is that in my life I have loved and been loved. I think that is one of the measures of a good life.


[1] I know, I am weird.
[2] With their permission and blessings.
[3] It was walking distance.
[4] He was ‘practicing’ on me for his girlfriends he told me.
[5] Which, in Canada, is 2 years + a day.
[6] Trust me, if there is a way, I would have found it.

Day 284 – the ‘part 2: MAiD’

Part 2 MAiD

MAiD or Medical Assistance in Dying is BC’s implementation of the Federal law that gives Canadians the right to a medically assisted death under a number of criteria:

  1. You must be experiencing intolerable suffering due to a grievous and irremediable (incurable) medical condition.
  2. You have to have made a voluntary request, in writing, to end your life.
  3. They are in an advanced state of decline that cannot be reversed.
  4. That illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and cannot be relieved under conditions that they consider acceptable.
  5. Their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time they have remaining.

There is more here at their website.

I meet all the criteria and I have had the first assessment today. The 2nd assessment will happen closer to the date that I choose to die. 

I have to commend the MAiD team members at Surrey Memorial who manage this system. It cannot be easy to find doctors to to do the assessments and carry out the procedures. Today we had a doctor come to our home to do the assessment. She was great. She also explained how it happens. They use 4 drugs total. Mostly what I will know, is falling asleep.⁠1 They can also use my port which is a relief because getting an IV in me can be difficult.

I am so very grateful that there is an option like this available. I think many people fear death. Having a measure of control over the how and the when is comforting. Now, the big question is: how will I know when the time has come? I suspect it will be the same way that I know with the dogs – I will just know.

December 3, 2018

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1 It’s exactly how I thought it would go.

Day 283 – the ‘quest for knowledge’ edition

December 2, 2018
Still tired

I have been getting a lot of feedback from people about how open I am about having and dying from cancer.⁠1 They wonder what it ‘feels’ like. Or they wonder about chemo side effects. When they find out that I intend to use MAiD⁠2 the questions really start. So, I thought I would break it down and answer any questions posted in the comments.

What does it feel like to have cancer

Before I knew I had cancer I was really battling fatigue.⁠3 I was having a lot of trouble breathing.⁠4 I would find that by the end of the day my legs would be really weak and getting up to let the dogs out was very difficult. I believed it was my asthma. I went to the doctor to get a stronger inhaler. She listened to my chest and said everything sounded fine. I attributed the breathing issues to the damage done by the smoke from the forest fires.

I was also having existential crises. I was wondering why we bother doing all this stuff? What’s it for? I would look at children and wonder how they could possibly learn everything they will need to survive in this world. 

Now that I am off chemo and back to a person who has cancer – I am really tired. I am still completely clear of the chemo. It’s hard to explain the fatigue. Some days I feel like I am moving through concrete and can’t keep my eyes open. I do a lot of things with my eyes closed. Every thing I have to do costs me energy. I am fortunate to have my wife and Angelina who go out of their way to make sure that I don’t have to do anything that isn’t absolutely necessary.

Inside, though, I feel like I am losing parts of me because of this fucking disease. My fatigue level limits what I can do. Leaving the house is becoming more difficult. As I do less and less there goes another part. I can’t work. I barely have the energy for a visit with someone. It’s a disease of loss.

Chemotherapy

Anyone who has ever had chemo will tell you horrible it is – they are not lying. This was one of the most brutal medical treatments I went through. Off the top of my head, here are the side effects I dealt with:

1. Vomiting and diarrhea.

2. Weight gain and loss – if I was able to eat I lost weight, and if I was unable to eat I gained weight. It made no sense to me.

3. Nose sores – I would get these scabs in my nose that would come out once or twice a day and my nose would bleed until they formed again.

4. Nausea and lack of appetite.

5. Hair loss – including my eyelashes. I mourn my eye lashes the most.

6. Things tasting funny.

7. Pizza – apparently on Taxol you lose a food. My food loss has been pizza. 

8. Even more fatigue – especially as the treatment went on.

9. Needing assistance for many tasks of daily living.

Chemo is not a walk in the park. I suspect the chemo I had was not as bad as others – for this I am grateful.

….stay tuned for part 2 on MAiD

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1 I didn’t set out to write a ‘cancer’ blog. As far as I am concerned the best has already been done. Check out the fabulous blog, written by Derek K. Miller, Penmachine for a great blog on many topics – including cancer.

2 Medical Assistance in Dying

3 I was needing to sleep about 12 hours a night.

4 Thirty tumours in your lungs will do that to you.

Day 282 – the ‘moving forward with MAiD’ edition

December 1, 2018
In pain today.

As time is moving on, I am becoming aware of its fleeting nature. I am feeling quite confident that MAiD be a reality for me.⁠1 Even though my 2 doctors⁠2 refused to fill out the paperwork, MAiD has physicians they contract with for assessments. They have arranged for someone to come on Monday which is very quick. 

As I move along the MAiD process, I am trying to figure out what I am going to do when I get the green light.⁠3 Once I know I can make the call, it will take about 2-3 days to have it done. I am not sure what’s going to cause me to decide but I will know it when the time comes. As I get closer, they will send a second assessor who will make the final call and carry out the procedure.

Right now, my pain levels are really high. It’s the cycle of my colon. I had a nice break (while I had cellulitis) from colon pain but now I pay. It’s a very deep pain that nothing much seems to touch. My pyoderma gangrenosum scar is also bloated along with the p’eau d’orange around it. It becomes very uncomfortable.

I have been sick with a virus for the last several days. I had a really sore throat and I find it so annoying. I am starting to feel better now thankfully. I hate having a virus. 

Knowing that my life is going to end soon is a very strange feeling. In many ways, I will be relieved of a body that has caused me a great deal of pain and limited what I could do physically. I will be happy to be rid of the anxiety I have had for my whole life. I am sad that I am going to make the people I love sad. I wish there was something I could for them to ease their path. I know that it’s going to be brutal for them. I am confident that our friends and chosen family will hold them and help them through this horrible time. I wish I could take their pain with me.

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1 I am seeing the doctor on Monday.

2 My GP said “I have decided that MAiD will not be a part of my practice.” Could she also decide that treating people with mental illness is not part of her practice as well? She doesn’t have to agree with my choice

3 I will not even entertain not being being approved.