Day 297 – ‘the vagaries of death’ edition

December 31, 2018When I was diagnosed with Stage 4 metastatic breast cancer, I cried for about 45 days. As I moved through those initial days and had it hammered⁠1 into my head that I was terminal and that this cancer was going to kill me The Oncologist,™ made sure that I knew this. He pretty much mentioned it to me every single appointment.⁠2

I used to think that I would pick a day but it’s more like a space of time. Right now, we are six days away from me dying. As we get closer to the day the more resolute I am in my decision. I’ve had a nice 3-day break from BMs which has reduced my pain levels immensely. But today, I am paying and paying hard. 

Lately, as I think about dying I don’t cry as much. I used to play the whole scenario out in my head⁠3 ending with the doctor asking me if I was ready, to which I reply yes, and I go to sleep. That’s it. This used to make my cry, hard. It would get even worse if I imagine what Deb, Angelina and Joe will have to deal with. Now, when I think about Monday at 3 pm, I am not happy per se, but I am not unhappy. I think I feel relief. I have relief that my death plan will have been executed the way I have thought about. 

Before the cancer diagnosis, I used to worry about growing old without family and how would I cope with that. I worried about becoming more disabled from my autoimmune disease(s) and how this would affect our future care. I worried about how my size was going to affect me as I aged. I already was having difficulty going to grocery stores due to severe degeneration in my lower back, arthritis in my hips and feet.

Emotionally, I feel like I am starting to shut down. I don’t really want to cry anymore, I have done more than I share. I feel like my brain has now stepped in, kicked the emotions to the block and calmed me that it was now in charge. My brain has always been my best asset; it has yet to let me down in a crisis. After my 45 days of crying, I think I had been abandoned by my beautiful linear brain, which for the first time can’t solve the problem. I can’t make this cancer go away, I can’t manipulate it away, I have no control over the situation. The only bit of control I have is when I have my death. 

Make no mistake, death is coming for me hard. Every day I lose something. This week it appears to be my legs which are very shaky every time I stand up. First off it takes me a good minute to contemplate getting up. Once up, I have to stand there for a minute while my legs don’t buckle. The biggest loss for me is one of time time both macro and mini. I have lost at least 20 years⁠4. The mini losses are daily – I need to sleep so much that I lose about 4 hours a day to sleep the 12 hours a night I need. This time is becoming increasingly fleeting.

Ps – if this blog feels all over the place that’s because I wrote it over 3 days.

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1 By The Oncologist™.

2 The Oncologist™ is a prick.

3 I am sure things will go much differently.

4 That’s how old my bio mom is.

Day 295 – the ‘cancer’s gifts’ edition

I know, you probably all think I have lost my mind or taken too many pain meds but that’s not the case. Many of us with cancer can regale you with stories of good friends⁠1 who have let us down horribly. Sometimes people just don’t know what to say or do and sometimes they are just assholes.

I have been truly blessed by the people who have helped my family preparing food, cleaning, doing yard work, building a fence, taking me to chemo and other appointments.⁠2 I have received messages from so many people. Some people wanted to tell me the affect I had on their life and/or something I did for them that they have never forgotten. I learned that people who I thought didn’t like me were actually intimidated by me and they did want to get to know me. So many people have thanked me for the transparency of my blog and the fact that I am willing to take death on and talk about it so openly. 

It is situations like this where social media shines. By connecting people and allowing them to share our lives can be enhanced by others. 

There was one person who definitely beat everyone. One of my former practicum students got on a plane from Australia to see me, stayed here for a day and went back. 

I want everyone to know, regardless of how you helped us out or who messaged and got in touch, I want to say thank you. You have all made what has been the worst thing that has ever happened to me insightful and somewhat bearable. I love you all.

PS: I have decided to change the date back to the 7th. There are far too many moving pieces to change it.

December 27, 2018
The kitchen instead of my office.

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1 Or we think they are friends.

2 I am not listing everyone because I don’t want to inadvertently forget someone.

 

Day 294 – ‘the False Flag of False Hope – or stop telling women to do more chemo all in the name of fighting cancer’

false-flag-headerSince the day I was initially diagnosed with breast cancer⁠1, people began telling me that breast cancer treatment has come a long way and that they just ‘knew’ I would make it because I was a ‘fighter’. Well, fast forward a couple of weeks and we now know that not only is my cancer Stage 4 and metastatic,⁠2 it is also very aggressive. 

Once we knew the status of my cancer, I was regaled with stories of someone’s grandmother’s friend was cured of metastatic breast cancer by eating the freeze-dried vomit of a newborn baby from the old country mixed in with various spider and eel bits and SHE WAS CURED! I am a critical thinker and I believe in medical science and I don’t believe that anyone is going to be cured of metastatic cancer with anything. The very nature of metastatic cancer is that it’s through the body and it’s going to get you, eventually. Once we shut those people down then it was the have you seen this naturopath, osteopath or homeopathist? I am not going to spend time on this post with my thoughts about the three above-named ‘professions’ as this blog is about false hope not deception.

Once you’ve run the gamut above the ‘fighters’ come in. These are well-meaning people who know women who have made it many years living with Metastatic Breast Cancer (MBC). They have done all the chemos, radiation, surgery etc. They know so much about this stuff that they could be oncologists. So on these brave women⁠3 trudge to chemo rooms where they are hooked up to toxic poisons that cause all sorts of side effects that make them sicker than if they just let the cancer take them. They suffer side effects that make their bones weak and break. They live with low blood counts that make them tired⁠4 with foggy thinking. 

Women new to the new metastatic scene. I entered at stage 4 so I haven’t had the years trying to beat a curable cancer. My first indication that anything was wrong was a met. I knew one other woman who had been fighting metastatic disease for 6 years. I am not going to delineate the way cancer destroyed her body as it could identify someone. But trust me, it was not pretty. A couple of weeks ago I was reading a post from a woman whose doctor had told her she death was closing in. Instead of supporting this woman to have a good death, that she has fucking earned, they were encouraging her to keep on ‘fighting’ and asking her if she had tried X and Y therapy. I was enraged! Why are we are we as a society so focused on what medical science can do that we accept any and all treatments offered? Simply put, we don’t have to. We have a right to a dignified death and in my opinion that happens long before someone has gone through 30 rounds of chemo.⁠5

The one thing that no one wants to talk about is the cost. If every woman with advanced breast cancer did every treatment on offer like smorgasbord, the health care system would very quickly go bankrupt. Oncologists need to take their eyes off whatever metric they are measured by and look at the well being of their patients. I know that The Oncologist™ did not do that. He was actually shocked that I wasn’t going to take his poison and once I no longer wanted chemo he wanted nothing more to do with me.⁠6

I have chosen MAiD.⁠7 Of all the people I dealt with the MAiD team have been amazing.⁠8 I have chosen MAiD to end my life. I am not advocating others choose this path. There are myriad reasons why MAiD is not an option for someone.⁠9 People who choose MAiD seem to be a pretty committed bunch. I asked my 2nd assessor⁠10 how many people have backed out at the last moment. She said of the 15 she’s done, none have backed out. I think this speaks volumes of the need for MAiD even though it is still quite controversial in the medical and wider communities.

If you are or know someone with advanced breast cancer please think twice before regaling them with stories of weird cures and dubious ‘professionals’. All these things are going to do is relieve them of some cash from their wallets while doing nothing for their cancers. 

I am so ready for my MAiD death. I no longer cry when I think of my family going on without me. There is nothing I can do about it. I am hopeful they will be ok and if not, they will figure it out. I am not the only one with good ideas. I have many friends who will help look out for Deb and Angelina. I have loved and been loved – what more could a woman ask for?

NB – we need some men to develop metastatic breast cancer on the regular and it will be cured without a question.

December 26, 2018

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1 A 2mm, triple-negative tumour in my right breast.

2 30 tumours in my lungs.

3 And, while, yes men can get breast cancer it’s still primarily a women’s disease. Men would not be asked to suffer like this. Things are so good for prostate cancer that most men die with it not of it. Men would not be asked to endure painful chemo treatment in succession. Big pharma would have been all over it. I am not playing the feminist card here and pointing out how women are let down by our medical system. It’s simply the truth. Personally, I am still waiting for women’s Viagra. I don’t think I will make it.

4 Personally, I haven’t had a red blood cell count higher than 100 in 5 years. That’s mostly from ulcerative colitis not cancer but chemo knocked more of them out.

5 My experience is that a round of chemo is 12 treatments over 3 months.

6 I lie. He was concerned about the maintenance of my port and to make sure I got it flushed monthly.

7 Medically Assisted Death

8 MAiD is a choice we have. It is one of many choices of treatment that terminally ill people have in Canada.

9 Religion, personal belief, insurance policies…

10 The doctor who will administer the medications to end life.

Day 293 – the ‘life sucks’ edition

I am sorry to have neglected the blog for the last bit. I have been working on a bigger piece that is taking longer than I thought.

I am also likely moving my MAiD date up from January 7. My pain levels have increased by about 50% some days and it’s getting to be unbearable. Mostly, I am really tired and I am so ready to go. Cancer is one mother fucker of a disease. It robs you of so many things – everyday is something else. Right now, it’s good hours in a day. I have gone from 4 to about 2 where I can concentrate on doing things. We are not sure what the date will be yet.

I am having increased trouble eating. It takes me a very, very long time to get anything down and the things I can eat are decreasing. Swiss Chalet is still my go to when I can eat or when I haven’t eaten much solid in a couple of days. Mashed potatoes, corn and gravy is the food of the gods for me. I am still able to my poached eggs on toast for breakfast that I share with the dogs.

Mostly life sucks at the moment. My highlights are watching an Australian series A place Called Home and crocheting dish cloths. I am also still listening to music and playing computer games when I am not filling out form after form to transfer my accounts to Deb. I have never seen so much paperwork. Dying is definitely paperwork intensive.

We are looking forward to a nice Christmas Day with some friends from Vancouver and a prime rib. Merry Christmas.

December 24, 2018

Day 292 – the ‘FOMO’ edition

December 22, 2018As we get closer to January 7, the date of my MAiD procedure, I am finding that I am increasingly ready to go. My initial date that I wanted and that wouldn’t work was December 18. I was ready on December 18. My mind is almost always flooded with thoughts of dying. When something comes up that bugs me, I just let it go now because I am not going to be here and I don’t care. 

What does get me though is all the things I am going to miss out on. I don’t get to watch my friends’ children to grow up.⁠1 I did get to mostly see Heather’s M grow up and N partially. Jennifer’s M has grown up to be a thoughtful and intelligent young woman and S is well on his way.⁠2 As a woman who never had children, I have been able to live vicariously through my mother friends.

The other things that I have FOMO about are mostly politics/pop culture:

  1. I don’t get to see season 3 of The Handmaid’s tale.
  2. Will enough Republicans come together to impeach Trump.
  3. Will JT be re-elected?⁠3 And if so, by how much of a margin? Andrew Scheer doesn’t stand a chance with his permanent grin that makes people not take him seriously, and Jasmeet Singh doesn’t quite have the chops yet to take on a Trudeau who was nursed at the political table. There is nothing he does without being several steps ahead, politically, than his opponents. Just ask Rachel Notley.

Then there are the things that I need to be rid of:

  1. Pain – which has increased by 50% in the last week. I am going into week 2 needing breakthrough medication at least 3-4 times a day. 
  2. Coughing – I am sure the tumours are back in my lungs. I am coughing but not yet short of breath. I am using my inhalers a few times a day.
  3. I am very unstable on my feet. When I stand up, I have to wait for a moment to get my legs under me.
  4. I am tired of being exhausted and anxious. I am tired of sleeping 12-14 hours a day,

The things I am enjoying:

  1. Crocheting – I am so happy to have it back. Right now I am making as many dishcloths as I can. It gives me the opportunity to use new patters and colours. Plus they are really quick.
  2. Watching TV.
  3. Playing games on my computer and listening to music.
  4. Eating when I am can.

There are many things I feel bad about but over which I have no control. As an atheist I don’t believe anything happens to us when we die. We don’t go to heaven, hell or purgatory we just cease to exist. I feel bad for my family, especially my wife, Angelina and Joe who are going to mourn my passing. I know there are lots of people who are going to grieve my death.⁠4 I wish there was something I could do to ease the pain that I know is coming. I am trying to fill them up before I did. I hate to leave my dogs behind but I know they will looked after very well. 

One other thing about MAiD is that I wish people would stop questioning my choice. I get admonished to not be so negative. There could be a cure on January 8 but I will be dead. There will be no cure any time soon. I simply cannot carry as I am. Very soon, I will bed-ridden and unable to wipe my ass. This is not acceptable to me. I even had an ER doctor question my decision and ask if I was really ready to go on January 8. I am ready. Don’t get me wrong, it’s going to be one of the hardest tings I ever have to do when I give the instructions to go ahead.⁠5 

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1 I keep waiting for the day that Lisa and Oliver realize that B is smatter than them. I think like will be easier then for them!

2 If I have forgotten anyone please let me know and blame the cancer brain.

3 I believe he will win without any difficulties.

4 I know. I keep hearing from them. LOL.

5 I am so done. After 13 years of ulcerative colitis and now cancer, I can’t do anymore and nor should I be expected to live this painful, sick existence any longer.

Day 291

December 21, 2018
Exhausted

Well, things have been a clusterfuck here The Swamp. I got cellulitis again. Yesterday we had a huge storm and our power went out for 36 hours. I stayed at a hotel last night because our generator is dead and I need my CPAP. The power outage we were in was very large. BC Hydro generally goes after the large outages first. The longest we waited was when there was a tree down on the tree form at the corner. It affected 15 people and we waited 4 days.

I have been feeling really shitty lately. I can feel tumours coming back in my lungs. I am coughing a bit here and there.⁠1 I am feeling exhausted most of the time. 

Facing your mortality is so difficult. As is typical for me, I keep trying to find a way to solve this problem but I can’t seem to come up with one. There is really nothing to be done but for me to take more chemo and feel even worse. This is not what I want and so I am going ahead with MAiD. 

There is lots more going on in my head but I am too tired to put it in to words.

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1 Power outages and disruptions to my routine don’t really help.

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!