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.

Day 279 – the ‘I can do that’ issue

November 24, 2018
This is all the hair I have left

Growing up in my adoptive family required that I learn very quickly about how to survive. My family was very chaotic, emotionally driven. You never knew when one of them⁠1 would fly off the handle and attack verbally, sometimes physically. As a child, as most children, I was trying to get my mother’s approval. At seven years old, I overheard a conversation between her and my great-grandmother. My mother was divorcing my father and she was telling my great-grandmother that she would be ok because she had me – her Rock of Gibraltar.⁠2 After my dad left, my predicament became apparent.

As a single mother, in 1972, my mother couldn’t afford after school care for me and my sister – so that became my responsibility. I had to start dinner, make sure the house was tidy and try to control my wild sister.⁠3 We had neighbours could call on if there was an emergency. But that was it, I was on my own.

At a young age, I learned to come up with contingency plans. My sister was extremely uncooperative and often made a huge mess and I would have to clean it up. I would need to have everything in place for when my mother came home. Trying to get my sister to keep the house neat was nigh on impossible. I would bribe and threaten her all the time to get her to clean up after herself. It never happened. If my mom came home and the house was a mess – there was hell to pay. My sister thought it was quite funny. I was the only one upset. This went on for several years.

I learned very quickly that if I was going to survive, I was going to have to do it on my own and thus the contingency plans began. I could, in a matter of seconds, assess a situation and come up with several different solutions. This became a life-long habit. I always had many different solutions should certain things happen. Some of the things I would think about were: what would happen if I lost my job, failed out of university, got in trouble etc. I also had a hyper-sense of fair. This led me to be an excellent advocate for those clients with complicated problems.

I can remember being in staff meetings and the group being presented with a problem. I would quickly go through the problem in my head, see the pitfalls, contingencies etc., and then give a solution. Invariably, my solution would be shot down. Two hours later, my solution would be adopted.

Right now, I have no contingency plans taking up space in my head. I have started a process.⁠4 This is a process that I don’t control and that other people are going to take care of for me. I know that I have done the best I can to leave my family in good financial condition. I had hoped to work for the next decade, at least part-time, so they will need to do that. I am not worried about them. They are smart and resourceful. I have the support of those around me and I feel so at peace with my decision. Everyday it’s get stronger.

I am not working. My mind is empty of work related tasks of things I need to remember to do. This is such a blessing. There were nights my mind couldn’t stop. I solved a lot of problems at 3 am in my life. Now, I am not solving problems in my sleep. Since I made the decision to pursue MAiD, I am not trying to get surgeries or do other things to prolong my life. Instead, I can do what I want to do – things that make me happy. Like today, Stevie who will rarely stay on the bed for more than 5 minutes stayed for a couple of hours and I got baby bubba kisses. This made me so happy. I think I am really, for the first time, enjoying life. It seems counter-intuitive that this is the time I would be happy, and content. 

I am ultimately not afraid of death – particularly a MAiD death. I will go to sleep. I can do that. 

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1 Mostly my mother, grandmother and sister.

2 At seven, I had no idea what it meant but I knew it was a compliment.

3 My sister was not adopted. She is 2 years younger than me.

4 #MAiD – Medical Assistance in Dying

Day 278 – the ‘calmness’ edition

I am feeling a strange calmness and peace in my body and mind. Since making my decision to pursue MAiD,⁠1 I feel like I am finally doing something for me. I am not forcing myself into contortions that are unacceptable to me. No more swallowing or ignoring my symptoms and my pain to prove something to someone. 

I am not sure where things are with MAiD. As of the last email, the MAiD coordinator was going to see if my GP would fill out the physician’s assessment after The Oncologist™⁠2 If she won’t do it, they will find someone else. I am hopefully that she will do it. I still have 6 days in my ‘reflection’ period.

Looking back over my life, I have been pleasing other people, at the expense of myself, consistently. I could list all of the things I have done it would be boring. In my adoptive family, being thin was the valued commodity, not intelligence. The only thing I ever had was my brain and I used it to try to gain my adoptive mother’s approval. I never could. She would be outwardly proud to other people about my educational/career accomplishments but to me all she would talk about was my weight. If I didn’t get a job she would say it was because I was fat. Given that of her 3 children, I was the only one who finished high school, graduated from university not only once but twice, and he worked for 30 years. My brother has almost always been unemployed as has my sister. 

I spent 5 years working in a place where I was bullied. I was sick, so sick, yet I drove in barely able to keep my eyes open due to fatigue from ulcerative colitis. I was hospitalized numerous times due to ignoring my ulcerative colitis symptoms. I do wonder what impact that behaviour had on me and developing cancer. 

But now? I feel free. I am much more relaxed. I am content to carry on as long as things are going well. I am crocheting and watching TV, playing computer games and listening to music and writing when I want. 

November 23, 2018
Me at the dentist, blew a crown

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1 Medical Assistance in Dying

2 If you want to read some truly scathing physician reviews check him out on Rate my MD. Email me privately for his name. If I know you, I will give it to you. Ignore the good ones. Those are clearly farmed.

Day 273 – the ‘ordeal is over’ edition

Well, all I can say is the ordeal is over. I am going to bullet this:

  • I ended up at the ER last Friday with cellulitis. 
  • My experience in the ER was harrowing. They managed to destroy my port site which will take months to heal.
  • I have been out of the house everyday for 7 days. I am exhausted.
  • I am off the IV antibiotics and on to oral. God willing and the creek don’t rise⁠1, the Keflex will kill the rest of the infection.
  • I had several days where all I did was vomit most food I ate. It was not fun

That’s about all I have to say about the last several days. It’s been hell all I have to say. I have been in tears almost every day. I appreciate good nurses.They are the under-appreciated and probably most knowledgeable members of the medical teams.⁠2 The nurses in Medical Daycare at Ridge Meadows have very patiently cleaned my port site with iodine instead of alcohol or Chlorhexidine. They have carefully put the Cavalon on that protects my skin from the adhesives I am allergic too. They have been most gentle and caring. I am grateful.

November 15, 2018
Exhausted but alive

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1 Not sure why, but it’s my new saying.

2 Most nurses anyway, except the one who killed my port site.