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.

Day 281

November 28, 2018Well our new family doctor continues her long line of disappointing and substandard care. She refused to fill out the MAiD⁠1 paper work as ‘it’s not something she wants to do in her practice.’ Well isn’t that nice, I didn’t plan to get metastatic cancer in my life but shit happens. She wanted to know why I didn’t want to do chemo anymore⁠2 and besides, it’s pointless as the cancer is just going to come back anyway. She actually said ‘we don’t know that for sure.’ I am beginning to wonder if she’s delusional. She tried to sell me on palliative care and she referred me. She told me that she thought my request was out of character⁠3 and that I was strong and could do this. I told her given my medical history I had no intention of doing anymore. The cellulitis did me in. Going to the hospital every day for IV antibiotics was very hard on me. They traumatized me in the ER with the way they treated my port and the amount of time after it took for it to heal. 

Those of you who know me, know that I don’t Millennials too much. I might make a few jokes here and there but that’s about it. Since getting cancer, I have noticed two things about this generation: no one will pick up a phone to solve a problem quickly and they are more than willing to prescribe painful treatments and procedures without giving it much thought. I am fairly sure that themselves have not had to endure what they recommend for their patients or seen anyone they love go through this stuff.⁠4

I get that doctors cannot be forced into filling out MAiD paper work. However, I think as time marches on health budgets begin to spiral out of control there will be more emphasis put on MAiD as a way to reduce health dollars spent. Does it make sense for me to continue with a very expensive treatment that I don’t want and which is only hurting my quality of life. I think has the baby boomers age, there is going to be even more pressure placed on doctors and the MAiD program in general. After all, we have a right to an assisted death in Canada.

I can’t say enough good things about the MAiD program itself. The staff I have dealt with have been very kind, empathetic and responsive. They readily share information and make sure  you understand how the program works. I am confident that I will get the death I want in their capable hands.

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1 Medical Assistance in Dying

2 Let’s see: diarrhea, neuralgia, nausea, vomiting, fatigue, suicidal ideation…

3 As if she would know.

4 I recognize that this is a big assumption on my part. But I do remember The Oncologist™ recommending I get another colonoscopy. I asked him if he’d ever had one and he said no. I told him I would never have another one after screaming through the last 3.

Day 280 – the ‘there has been much healing’

November 26
We are getting bidets

Well, the weekend is over which means that we are back to having appointments and moving forward with MAiD. I see my family doctor tomorrow, so I will ask for a referral to palliative care. This more for the future as I don’t need much of anything right now. I am not yet sure how far I will let myself deteriorate before I decide to carry through with MAiD. Having never done this or known anyone who has, I really have no road map.⁠1 I remain resolute in my decision. 

I am certainly starting to see decline. I need to sleep a lot and I get tired very easily especially if I have to concentrate on something. I have been trying to make a pattern work and found it a bit difficult and then got very tired. Eating remains an issue. I don’t think all the chemo is out of my system yet. 

My bowel is an interesting character in my body. When something is going on, like the cellulitis, and I am completely overwhelmed, it fucks off for a while. It works but I have no cramping or pain. Almost as soon as the other thing is resolved it’s right back. I woke up in pain yesterday morning 12 hours after my last dose of Keflex. It’s nice to know there are some things you can count on.

What a difference a couple of weeks makes. Here is my leg on Day 1 and Day 15:

My Port Site is on it’s way. It’s still bruised in one spot:

So, things are healed which is a huge relief. I just about have my skinny ankles back. I had a bad fall in June and I still have a bruised knee and fluid in the leg. Deb has been massaging it with my foot on her shoulder every night. This is the same leg that I got cellulitis in.

 

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1 I think because it is so new, there are no groups or forums that have sprung up on the internet.

Day 276 – the ‘when people show you who they are, believe them’ edition

November 21, 2018I had my last appointment⁠1 with The Oncologist™ yesterday. And, he’s back to being the biggest walking asshole around. He has spent the time, since I came into his care, telling me that I am palliative, incurable, etc. So, I opt to apply for Medical Assistance in Dying⁠2. The MAiD coordinator asked me to give him my form and ask him to agree to do the physician’s assessment. He refused. He said he thinks it’s a conflict of interest.⁠3 Then he said he ‘never signed up to do MAiD.’ I asked him about next steps and who would I go to if I need some palliative support. He said MAiD takes care of it.⁠4 I will wait to hear back from MAiD as they will now ask my GP to fill out the paperwork.

When I was first diagnosed, I saw the trailer for Bohemian Rhapsody. My goal became to live long enough to see the movie. We saw it yesterday and completely enjoyed it. And, I ate popcorn for the first time in years!⁠5 I thoroughly enjoyed it. I loved the music. As my friend Joe pointed out you can see his coming demise in the lyrics of some of the songs. There were certain times that I cried while singing.⁠6 

Since I got sick, my death has been a mystery. When, where, how? I feel a great sense of peace and control since starting the MAiD process. I am very relieved. It is also freeing because I don’t have to care about many things. I won’t be here so I don’t care. I am taking as many steps as I can to protect my loved ones and other than that there’s not much else I can do. I am busily crocheting dishcloths⁠7, doing stuff on my computer, listening to music and watching TV. These things make me happy.

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1 Likely.

2 MAiD.

3 Does he get kickbacks from the pharmaceutical industry??

4 This turned out to be a bit of misinformation (I am being generous).

5 Popcorn is really hard on my system. It used to be one of my most favourite foods. I ate it for dinner a lot!

6 We are the Champions was really hard.

7 For Deb.

Day 275 – the ‘MAiD’ edition

November 19, 2018I am sending in my MAiD⁠1 paperwork today after we sign the wills. I will then be assessed and have a 10 day reflection period before I can make my request. It sounds like they have implemented this legislation in a very kind and thoughtful way that is patient-centred – this makes me happy.

I don’t want to go back on to chemo. I am not sure what is available that doesn’t include dexamethasone⁠2. I don’t want to do anymore Taxol as I don’t want any more neuralgia in my right hand. I am not going to do chemo this week as I want my leg to have another week to heal before (if) it is to be assaulted again. 

I do have an appointment next Monday that may change my mind about what I am going to do but I am not hopeful that it will go my way and that I really want to do it. I don’t want to go into any detail here as it’s intensely personal.

I am not sure what will happen once I go off chemo. I don’t know how quickly the tumours will come back. There is also the piece that you have to be of sound mind when the procedure is performed – this makes me not want to wait too long for the cancer to make it to my brain.

Many decisions to be made in the next little bit. I just need to get the process started and have it ready to go for when I am ready to go.

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1 Medical assistance in dying.

2 Gives me suicidal ideation.

Day 274 – the ‘holding my breathe’ edition

November 16, 2018
Tired

We have been monitoring my leg constantly. Any sign of new redness or heat and back we go. So far so good. We are taking pictures daily and things seem to be progressing. I am so concerned about it continuing to improve. I am diligently taking my antibiotics.

 

Not much else right now. I am still very tired and trying to get some strength back before next week. We will have a quiet weekend.