So, round 2 has begun. I had to have the steroids again which pissed me off to no fucking end. I hate them. The side effects are horrible for me.1 We have to do them for 2 more treatments. As if my emotions weren’t already all over the place brace yourselves boys and girls because things could get ugly around these parts. I am not sure what I would do without copious amounts of benzos.2
You know, it occurs to me, that it’s a good thing I was never put in charge of designing torture regimes because I gotta tell you, chemo therapy is about as close to torture as I ever want to get. Not only would I tell you everything you wanted to know3 I would also try to stand on my head4 to avoid having another treatment. It seriously breaks you down.
In other news, my yarn for the shawl has arrived so I am going to start working on it today. This is a little sunshine in my otherwise dark world.
I suspect they are horrible for everyone but not everyone has done a full year on prednisone and is thus more sensitive. ↩︎
I know it’s been quiet around here this past weekend. I am tired and stressed. I start chemo on Tuesday and I am absolutely dreading it. I am doing the same drug, Taxol, and I am worried about the side effects. In particular, I am dreading more neuralgia. I think it can be mitigated by wearing ice mitts and booties – so much fun.
The highlight is that I have been crocheting. This makes me happy. I am still waiting for my yarn to arrive. Hopefully, it will be here soon if it doesn’t get caught up in the postal strike.
We had municipal elections on Saturday. For the first time in my life, I didn’t vote. I just didn’t have the energy. I hate this fucking disease.
I am so frustrated at the state of things with my health. I am back to being on the verge of tears all the time. Crying before breakfast is not a good time let me tell you. Even off chemo, I feel like shit. I look at the women I am meeting in a FB group for metastatic breast cancer who have endured this for years and I feel like I should be able to as well. But I know that I can’t. I am not even sure if I will be able to keep going if I do get the mastectomy. I will try.
Eating is also such a challenge. With the exception of breakfast, I have trouble getting food down and keeping it down. Last week, in particular, was very difficult.1 I have also had very loose bowel movements and my IBS in overdrive which increases my pain. This is all off of chemo! I can only imagine what this week will be like.
My eating difficulties are exacerbated by stomach stapling I had in 1997 and ulcerative colitis. ↩︎
I have an appointment with the surgeon. I am fairly confident that she wouldn’t waste her time seeing me if she isn’t considering doing the surgery. I think my cancer will be much more stable if I can get the mastectomy done. Plus it will really piss off The Oncologist™ if she does the surgery as he says she won’t.
I actually have 2 kinds of cancer. I have the triple negative tumour which has been shrunken down a lot by the Taxol. Then I also have inflammatory cancer in the same breast. It is the inflammatory that started to come back within 2 weeks of being off treatment. Everything else seems stable.1
The next couple of weeks will be busy. Chemo starts again on Tuesday. Then the following week I see The Most Amazing Pain Doctor™ on Tuesday, followed by more chemo. And on the Wednesday I see the surgeon.2
Joe and Sheldon have gone back to Calgary. I fear that Suzie’s hair3 will never be the same after BC humidity. When she arrived she was all poofy and when she left she looked like a she had ringlets like a Portuguese Water Dog. We had a photoshoot with Sheena Staples from Big Air Photography yesterday so look forward to a bunch of new pics of the Swamp monsters along with Suzie and Nanuq.4 We had a great visit with lots of time to just hang out and do our Joe and Chris thing. It was great to see Sheldon and to meet the dogs!
I have no empirical evidence of this – I can only by my symptoms. My lungs feel fine. I don’t need ventolin to go up the stairs. I am not coughing etc. That’s not to say that it hasn’t settled in somewhere else but that’s unlikely at this point as The Oncologist™ said that I had very little cancer in my body at my last CT. ↩︎
She will be anointed with a new name once I get to know her better and based on whether she’ll do the mastectomy. The Oncologist™ doesn’t think she will, hell he didn’t even think she’d give an appointment. ↩︎
I am not used to being in situations I cannot control. I have been controlling situations around me since I was a child – it was a necessity to survive in my adoptive home. Letting my guard down and trusting them generally resulted in emotional abuse. To them, vulnerability was an invitation to cruelty. As a result, I have gone through my life with plans, contingency plans and contingency plans for my contingency plans. My head has always been a very busy place.
Cancer has placed me in a situation where I don’t have control. It doesn’t seem to matter what I try I cannot control what my body is going to do or the decisions The Oncologist™ is going to make. What I can control is my attitude. So, I am going to take some steps to improve my attitude in the hopes that it will help my overall outcomes. Here are some of the steps I am going to take:
Even off of treatment I have been dealing with nausea and vomiting. It’s been so bad lately that I have been subsisting on poached eggs and a couple packages of ritz crackers with cheese. I am going to add in a couple of Ensure to increase my nutrition and calories. I do far better when I am consuming enough calories for my body’s baseline operations.
Now that I have crochet back, I am going to make a beaded shawl for me. I have never made anything for me in the 30+ years I have crocheted. I think it’s time.
I am going to spend more quality time with the dogs. I got Stevie up not he bed today and I got so many nice kisses. Piper is getting older and she is so loyal. She’s never far from me.
Music – it soothes my soul. I need to devote time every day to listening to music and perhaps playing a game. Music fills my soul and has always been central to my self care and coping. I love nothing better than playing a game and listening to music.
As an introvert, I need to spend some time everyday introverting. I need time by myself.1
I want to spend some time with Deb and Angelina making some memories. We are going to get some professional pictures done. It’s our 15th wedding anniversary tomorrow and we are planning on going into Vancouver for a couple of nights. I have my chair so I can be mobile without pain.
I am going to get our wills and my MAiD paperwork done so that I have it should the need arise. MAiD is really the only power I have in this situation.
Spending time with good friends.
I am not sure how successful I will be. What I do know is that wallowing in self-pity is not good for me. I am pretty head strong so I am fairly confident I can do chemo again. I just got an appointment for the surgeon at the end of the month – if she had no intention of doing surgery, she wouldn’t have approved the appointment as she has received all of my records. Here’s hoping she agrees the breast needs to go.
So, we saw The Oncologist™ today. He is such a fucking asshole. He looked at my hand and went over the report from the surgeon that noted how pleased she was with the outcome on my hand. We talked about a mastectomy and suddenly he had nothing to say about how I wouldn’t heal.1 He has now passed on the responsibility for decision making about a mastectomy to the surgeon. He noted that there have been many situations where he has said a patient shouldn’t have surgery and the surgeon has said yes. However, in my case, he thinks she will decline to perform surgery.
So, I have the green light2 to see the surgeon about a mastectomy. I will have to do another round of chemo regardless in order to calm the inflammatory cancer down on my breast so that if she says yes to the surgery it will be a little easier. I start back on Taxol next Tuesday.
I really don’t understand this man’s ego. Now that he is no longer being the surgery gate keeper, he reminded me that he controls the chemo. I feel like once I dispel his reason for not doing something, he comes up with something else.
The other thing I really don’t understand about how these doctors operate is that no one wants to pick up the phone and talk to one another. Seriously, what is that about? If there was a problem to solve, my old GP would just pick up the phone while you were there and sort it out.
Hopefully, the surgeon agrees to the surgery. Without it, I can’t see how life is tenable being on almost constant chemo or at least that’s my line in the sand.
Prior to this he said he wasn’t a candidate for any surgery because I wouldn’t heal. ↩︎
What is it with doctors and morning appointments? Don’t they know it’s mostly sick people who go see doctors and we don’t want to get up in the morning? There should be screening doctor’s offices to only make the healthy people come in the morning. Afternoons should be reserved for us chronically ill people who don’t get up before noon!
Anyway, all of this to say, I saw the hand specialist today. She said that I had healed in above average time and very well. She was impressed with my range of motion and told me I could do whatever I wanted. I confessed to the early crocheting and she was fine with it as long as it didn’t hurt. Then we went to get my blood work done before I see The Oncologist™ tomorrow.
Given my ‘above average’ healing time, I am going to try to talk him into letting my have a mastectomy. It really is the only way forward I can see dealing with inflammatory breast cancer. I just cannot cope with 3 months on chemo, 1 month off for the rest of my life. It is the inflammatory breast cancer that’s going to make me need treatment sooner. Plus it’s starting to become more painful now. I refuse to be a martyr to cancer.
Coming to terms with my own death is really hard. Whenever I think about it, I start to cry. My head is a jumble of emotions whenever I think about it. In my mind, I do not see me waiting until I have exhausted every treatment. I will be proceeding with the MAiD paperwork. I am hoping to get it witnessed when we go in for our wills. I won’t ask friends to do this for me – it seems like an onerous request. I am off to have a nap because I was up so early this morning.
There are many diseases out there that can take you out. But for some reason, cancer seems to evoke a metaphor of ‘fighting’. You will often read in obituaries that someone fought cancer ‘fought bravely’. When they eventually die, it is often described as them losing their ‘fight’ with cancer. I used to hate this metaphor about cancer. To me, it felt trite and minimized the struggle that people with other diseases endure.1 I would argue that someone with ALS suffers greatly and is every bit as ‘brave’ as someone with cancer. The corollary that goes along with the fighting metaphor is the questioning of why cancer happens to good people. Like somehow we are immune.
It is the ‘fighting’ metaphor I want to talk about today. I am not sure how it evolved. Certainly most of the treatment options offered make the brain override the body. After all, the body is indeed being poisoned by the medication that is pumped into someone with cancer. In that case, the person with cancer is quite literally waging a war with their bodies. Just by getting cancer, our bodies have already betrayed us. Somedays, I get really angry at my right breast for starting a process that is going to kill me. I have done round of chemo and let me tell you it was a fight but not in the usual way people think of it. It’s very hard to go to the hospital every week and to know that your body is being pumped full of poison. This stuff is so toxic that the nurses administering it have to wear an extra gown that is then thrown away at the end of the day. Some chemo can destroy the veins it’s going into and injure the patient.
Then there are the side effects which vary from drug to drug. I have lost most of my hair.2 My nose would bleed every day and form new scabs that would eventually come off – wash, rinse, repeat. This was quite painful. I had serious diarrhea, which given the status of my colon increased my pain levels by about 50%. I thought I knew fatigue from my years of being sick with ulcerative colitis. Chemo causes a whole different level that demanded daily naps. I was good for about 4 hours before I needed to sleep. I was weak, dizzy, and nauseous. It was a very long 12 weeks.
So, what about the cancer patients who choose not to fight as society seems to think they should? I am seriously considering not doing more chemo unless The Oncologist™ agrees to a mastectomy. Less than 1 month off of chemo and the inflammatory cancer in my right breast is getting worse. It doesn’t hurt yet, but that’s coming. So far The Oncologist™ has said no to a mastectomy because I am palliative and he’s worried about how I would heal. So, as far as I am concerned, I am likely to make the decision to not do anymore chemo. I may change my mind at a later date.
So here is my question – if I choose to avail myself of Medical Assistance in Dying (MAiD). Does that make less of a fighter or perhaps a coward because I am choosing to not to engage in a fight I can’t win. I have a triple-negative tumour which means the 3 main front line treatments are not available to me. I know there are cancer cells all over my body and that removing my breast will not be curative, however, if I have a mastectomy, the inflammatory part of the cancer would be gone. This might mean that I could go longer in between treatments until I run out of options. I am not prepared to do chemo round after chemo round with only a month off in between. If that’s what my life is going to be – I don’t want it.
I have decided to get the MAiD process started. I will fill out the paperwork in the next couple of weeks so that when I am ready for that option, it will be available. If that makes me not a fighter, I am ok with it. I am going to go out on my terms.
I volunteered at an AIDS hospice in the 90s – the patients there fought every bit as hard and endured a great deal of pain both emotional and physical. Many had been abandoned by their families and really had no one who came to visit and to care for them. ↩︎
I don’t really care about it but some people do. ↩︎
Note – I do talk about my death in this post. Just in case you’d rather skip it.
I have really been enjoying these days where I am feeling relatively well. I am still tired most of the time but it’s not the bone-crushing fatigue I had while I was doing chemo. I can stay awake for about 12 hours before I get super tired. I am sleeping really well and that makes me happy.
I have been listening to a lot of music. It’s like I am trying to stuff as much self-care as I can over the next few days. I see The Oncologist™ on Tuesday and I fear I will end up back in chemo. It’s not my first choice. I would rather wait and enjoy the next couple of months. He may not give me much of a choice though.
This whole notion of facing your own mortality much much sooner than you had anticipated is a tad stressful to say the least. There are so many factors to consider:
I am terrified of becoming so dependent on other people that I can’t wipe my own ass.
If I were to choose to die at a time and place of my choosing1 will my friends and family be upset with me.
I feel guilty for not wanting to fight as others I know have. I just don’t think I have it in me. I could find it, I am sure. I am a tough woman but I am not going to round after round of chemo particularly if I can’t get a mastectomy. At this point it’s the inflammatory breast cancer that’s causing the biggest issues. As long as it remains on my body. I will continue to need almost constant chemo. If this is my future – I don’t want it.
I am torn because there are things I want to see. As poisonous as politics are right now, it’s an exciting for a political historian.
I feel like I am not supposed to be done. I had plans dammit. I was going to do different things, take some courses, crochet, become a life coach. And now all of that is in jeopardy.
I feel like the best years of my life are being stolen. I am digging my 50s. I feel (mostly) comfortable in my own skin, I feel like I know shit, and I love my ‘telling it like it is’ style. I feel like I am just getting started.
Some days I feel like I have come to terms with having metastatic breast cancer. Other days, not so much. I have denial, anger and depression down to a science. I see glimpses of acceptance.
In a way, I feel like medically assisted death has complicated this situation for me. I am really attracted to this idea. Perhaps because it’s the only thing I can control – the time and day of my death.
My head is a busy place these days – full of questions and uncertainties. I cycle through all the options all the time and nothing feels right.
I am an avid CBC listener. On most days, the CBC fills the space in my office with great radio content. If I am not listening to the CBC live, I can often be found trolling their podcasts. In short, I am a fan. However, I have a big complaint and it has to do with the legalization of marijuana.
I swear to god that the CBC thinks the world is going to end on October 17 when pot becomes legal. They have dedicated so many segments to everything from youth and marijuana to your grandparents getting their stone on. They have devoted a full week to marijuana coverage. They have examined what happens when youth use marijuana and what it might do to their brains1, they have looked at pot regulations in the US in states where it is legal, how to spot pot impaired drivers etc.
If there is anything the government should be concerned about is the patchwork of access to legal pot. In provinces where access is limited in the beginning, there will still be a fair number of people accessing marijuana on the black market which is precisely what legalization is supposed to accomplish. The government will also be foregoing the taxes they could have collected on that sale.
Then there is the whole question of edibles. Not legalizing edibles means that the blackmarket will continue on which means that the government will not be regulating what goes into edibles, who can buy them and ensuring a safer system for those who use edibles?
The media paranoia about legal pot is rivalling that of when Equal Marriage was enacted. I remember Ralph Klein musing, when Equal Marriage became law, that the sun will come up tomorrow. I predict the same.