Day 301 – The End

Well, this is it. It’s January 7 and it’s time to say goodbye. In just under 3 hours, a doctor will help me to leave this body behind and go wherever it is we go.

I have always had a very intuitive relationship with my body. Sometimes when I’d been having a lot of trouble with my colon, it will stop in the face of something bigger. When I got cellulitis, I had no colon issues for 3 weeks.

Now, I am coughing like crazy and my colon is calm although quite achy at times.

So, my friends, I want to thank you for reading the blog and commenting. I am so pleased that many of you got so much out of it. It was not my intention to start a cancer blog.

Regardless in 90 minutes the doctor will arrive and we shall begin the end.

Deb, Angelina, Joe, Rosie – I love you deeply.

Everyone else who helped us out, your generosity will not be forgotten.

Day 300 – the ‘pull the plug’ edition

I cannot believe it is the day before I am going to die. I am relieved because things are getting harder but it is going to be so hard to say goodbye to my chosen family. For someone who has had four sets of parents, one set of step-parents and two ½ brothers, I have no traditional family. My chosen family more than takes up the slack.

I’ve been reflecting on my death for the last couple of months. Deb asked me if I was scared and I am not, at all. MAiD has done such a great job explaining the process there is nothing to fear.

I don’t really have much to say that I haven’t already said. Ultimately, if I had a choice, I would choose to have a treatable breast cancer. Unfortunately, that was not to be my fate. I entered the game being many points behind with only a minute to go. I used up my time and I wasn’t able to score all the points. 

I want to thank everyone for all the help – whether it was over the summer, bringing us food etc. It has all been immensely appreciated. Thank you.

And, I think that’s it. Unless something else comes up.

Day 299 – the ‘more miscellany’ edition

Well, it’s another blog where I don’t have to craft full paragraphs:

1. Don’t trust people who don’t like dogs. 
2. If your dog doesn’t like someone there is usually a reason. Stevie disliked this one person every time she saw him. We though she was just being shy.^⁠1 She never stopped barking at them no longer how long they visited.
3. Death is something we all have to face at some point in time. All of the secrecy that surrounds death only leads to fear and confusion. I think if we can somehow normalize death – talking about the process more openly instead of in hushed/shamed tones, particularly around children. This only serves to confuse and make them fearful.^⁠2 
4. As we know, there are as many and varied ways as there are human beings to die. The thing is we are all going to do it. Very rarely, do we have an opportunity to say goodbye to our loved ones in a deliberate and loving way. Instead of waiting until I could barely function, waiting for death, choosing to take control with MAiD has made me feel so much more positive about the whole thing.^⁠3
5. Today, I am having the pleasure to listen to one of my oldest friends cooking and baking while they laugh and have a great time. I knew they would like each other. It is so heartening to see that this is much more of a celebration of me than it is about death. We all know what’s going to happen on Monday.
6. I feel good about Monday. I know that I have no other options and that to continue to do chemo will just make me sicker. Sometimes when I look at those women who have been fighting for years, I have to remember that many of them started with lower stages. I am mentioning this because although many of you think I am brave for doing MAiD, I think I am not at all brave. I am avoiding all of the unpleasantness that comes with the advanced decline of death. I am not into someone wiping my ass.
7. In many ways I am still reeling from the diagnosis. My year turned out so much differently than I had envisioned last January. We were on track until about mid-March. I have barely accepted the cancer let alone the death part. I am fearful it will enter my brain. I am already somewhat concerned about my balance. 
8. As much as I don’t want to die, I am also quite accepting of the fact now. My life has been hell physically for well over a decade. I have always had issues with my weight and they have been compounded by my other illnesses. Not having to face another summer, or Christmas or deal with the hard parts of life, I am happy to be checking out. Again not that I would choose to go now however, I am accepting, and, in some ways, I am relieved. The best part is that I don’t have to pack a bag.
9. MAiD sent a couple of nurses yesterday to make sure that they could access my port. There was a bit of trouble but I was able to point out one of the edges out and it was fine. I think one of them was a bit nervous so I tried to keep her calm by letting her continue to try. She got it. So all should be fine.
10. Now, I am running away from my computer to spend time with my guests who are cooking!

¹ She would of course take treats from him because stomach.

² I know, I’m not a parent but I did work with teenagers for almost a decade.

³ Again, I don’t want to die. My cancer has other ideas.

Day 298 the ‘last days’ edition

Writing has been difficult over the last several days. I am not really sure what’s happening with that so I will do a more miscellany post:

1. I want to thank so many of you for your kind words and telling me what I have meant to you or how I affected your life. Many of these are people with whom I have had a casual connection: Facebook, friends of friends etc. Then there are the people I know IRL. Wow, some of you have completely blown me away with what I have meant to you. I so appreciate the time you took to write to me. I have read every single message. 
2. I was thinking this morning about how MAiD can completely changes the dying experience. Instead of days and nights long vigils and wondering if this is the time or should I fly home and all the stress that goes with having a terminal loved one. By the time the death vigil starts the sick person is likely bedridden and everyone is trying to keep everything quiet. Instead, I am up to conversation^⁠1, I can eat some with everyone, and we can laugh. This to me is a far better death experience than I could have imagined. We’re not there yet but it’s close.
3. I am looking forward to Monday and I am looking forward to dying. This in no way means that I want to die but it seems I don’t get a choice in the matter so I am going to embrace it. I am looking forward to being out of pain completely. Things are not getting better in this body and it’s only a matter of time where I would be confined to bed. So, I feel like I have picked the best time, made the best choices I could in incredibly trying circumstances.
4. Speaking of MAiD, I am so grateful to this program and the women^⁠2 who seem to be making it work while some of their colleagues take stands against MAiD. As usual, women lead the way in caring and compassion and we are almost always at the vanguard of progress. It is women who will save us from ourselves. 
5. The port nurses just left. They had a little trouble but we muddled through it together. They need to make sure that they can access the port in time for the doctor Monday.

That’s it for now. I will try to blog one more time before Monday.

¹ After at least 12 hours of sleep though so I don’t’ have to nap.

² I am not going to say it’s only women doing the work to support our right to die on the ground. But I will say that I have only come into contact with women.

Day 297 – ‘the vagaries of death’ edition

When 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 hammered^⁠1 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 head^⁠3 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 years^⁠4. 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.

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 friends^⁠1 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 7^th. There are far too many moving pieces to change it.

The kitchen instead of my office.

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’

Since the day I was initially diagnosed with breast cancer^⁠1, 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 women^⁠3 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 tired^⁠4 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 2^nd assessor^⁠10 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.

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.

Day 292 – the ‘FOMO’ edition

As 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 

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

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.

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