As of last week, I started back on chemo to try to address the inflammatory breast cancer in my right breast. It came back very quickly off treatment.1 I showed up for my appointment, expecting to get taxol. It was then I was informed, I would have to do the pre-med again – dexamethasone and Benadryl. I complained to the nurses but they said it was mandatory. I went ahead it with it thinking it wouldn’t be too bad and that I would address it The Oncologist™ this week.
Well, I couldn’t have been more wrong. The drug affected me worse than it ever has before. It seems that each time I take it, my reaction to it’s get worse. I spent last week severely depressed, crying, with suicidal ideation. I am clearly having an adverse reaction to this medication. I guess we shall see what happens tomorrow.
Some brutal truths about family have been hitting me this week. I am not sure how one person can have as many supposed family members as I do and yet have not one of them be there for me in this time of crisis.
Let’s start with my adoptive family. Since my mother died1, I have had my adoptive brother and sister. My brother has been largely disowned by the family for many deeds2. Then there is my lovely sister who is doing her level best to decimate my mother’s estate before it can split equally between us. Luckily, there have been some solid people who have intervened and prevented this from happening. My sister is not very bright. She is easily swayed by ugly men who abuse her. We had actually been getting along fairly well until ‘bob’ came on the scene. In that time she went through S400K of her own share and then started misappropriating funds. For sure she took $130K more than required to pay taxes. I was offered ½ of this by ‘bob’ in November of 2016 and then I hear nothing more from them except for threats, intimidation and verbal abuse.3 My mother died almost 4 years ago and I am still waiting for my sister to finalize the estate. My lawyer sent me the ‘accounting’4 from the other side. It was a complete joke. I think she must believe that I am not going to look at it that closely but she’d be wrong. I may not be an accountant or bookkeeper but I know numbers. I have been trained to hone in on things that don’t make sense. At this point, I need the estate done. It has to be done before I die because I cannot leave it to Deb to finish.
Now we’ll move on to the step-family. These would be the children of my step-father, my mother’s second husband. They are all about a decade older than me. They hated my mother as they blame her for breaking up their parent’s marriage.5 From the time they got together, we were treated like 2nd class citizens. Holiday meals consisted of my mother, sister and me cooking and cleaning up after dinner as well as looking after their children.6 I decided to let my step-sister know that I had stage 4 metastatic breast cancer and kind of thought I might get a get well card or something. I received absolutely nothing – not a card, not a phone call, not an email. I simply wouldn’t behave this way. I would have sent at minimum a card and likely would have sent flowers.
As an adoptee, I have spent years thinking about my adoptive family. Of course the only reference point I have for my biological family is me. As a child, I thought my family would be like me – especially my mother. She has now gone out of her way to change her phone number and email address so I can’t call her once a year. Yes, she has taken all of these steps to avoid that one call/email. I tried reaching out to my cousins, they decided to handle the ‘situation.’7 They have also said that ‘no more communication is necessary.’ On my dad’s side things are no better except there is even less communication. I met my father and his wife in January of 2012 and I never heard from them again. I have two ½ brothers. The youngest one reached out to me in January of 2015.8. I never heard from him again despite his statements about wanting to meet and stay in contact. My illness has exposed a potential genetic link.9 However, given the aggressiveness of my cancer, they wanted to offer more genetic testing through a lab in the US. It would cost $300. I wanted them to know so that they would know how to monitor their own health and that of their children. I was completely ignored. I have finally messaged the information to the other brother’s wife as she seems to check social media more often.
Clearly for me, family is not where it’s at. I am not sure why there isn’t one person in any of my families who has not let me down. Yes, my mother left me lots of money. But make no mistake, both Deb and I worked hard for that money10 only to have her fill it in the following summer. You have no idea how hard it is to be surrounded by biological family and to have no contact. I have spent my entire life not looking like any members of my family. I look like my brothers. I look like my father.11 I don’t understand how they could not even be curious about the ½ sister they have in this world.
I know that many of you will say that you have your chosen family – and I am not downplaying the importance of these people in my life. But this is about facing rejection from the very people who are supposed to love you and look after you. Because I was adopted, I spent the first four months of my life at the Grace Hospital12 before being placed. I do believe that this time not attaching to my adoptive mother has had a profound effect on me.
1 In January of 2015
2 Many of which I won’t go into now but include ripping family members off, fighting with others etc. For all intents and purposes he is a criminal psycopath and if you come into contact with him he will charm you out of everything you own.
3 He once threatened to come and ‘punch my husband in his face.’
4 If you could call it that.
5 In actuality what happened was that their mother kicked Bill out of the house.
6 I can remember one of them having a son who, at two years of age, kept wandering into the kitchen and almost burned himself on the stove.
7 I was actually referred to as the ‘situation.’
8 Ironically on the day my mother died.
9 One of my genes had some variants which were not considered serious.
10 Just ask Deb about the pond they asked her to build with a pickaxe through rock and clay in Radium.
11 Other’s see resemblance to my mother but I don’t.
I think it’s time for a change of pace here at Dispatches from The Swamp. Yes, I still have cancer and it sucks, The Oncologist™ remains an asshole and I am miserable. But I thought it was time for some pop culture mostly in the form of TV and music.
Here we go:
Parts Unknown (Mostly on Netflix) – The is Anthony Bourdain’s show from CNN. Prior to his death, my only exposure to Bourdain had been on Top Chef1. On that show, he made pointed, sarcastic comments to the contestants so this was my overall impression of him. I basically thought he was an asshole and I suspected that this would carry on to his show. After his suicide, I became curious about his show. Immediately, I was struck by the tone. It was clear that Bourdain was there to tell other people’s stories and, more importantly, he completely gets out of the way of the evolving story. Food is always a part of the show with Bourdain showing off the region’s most famous/cultural dishes. I think the episode I have been most struck by is his one on Massachusetts. This is where Bourdain got his start in kitchens and where he used his first bag of heroin. Again, the show does show some of the food of the region but spends far more time on the burgeoning opioid crisis in Season 4 – which broadcast in 2014. I highly recommend this show which is part food, culture, ethnography, travelogue and memoir. Plus, he will eat anything and proclaim it good.
Leah Remini’s Scientology exposé – on A&E. I have read a fair number of books on Scientology and I am blown away by the information about the church that is revealed in each episode. Remini was a parishioner, her partner on the show, Mike Rinder, was, for all intents and purposes, a Scientology enforcer. Part of what makes this show excellent is that Remini holds Rinder’s feet to the fire when he uses watery terms like ‘Scientology told me to do it.’ She makes it very clear that it was him, following the policies laid out by L. Ron Hubbard. I don’t know what this series will accomplish in terms of bringing down Scientology2 But it is compelling television and very well done.
Victoria – if you like the Crown then you will love Victoria. Jenna Coleman as Victoria has to fight off so all sorts of intrigue of her scheming relatives to remove her from the throne or at least influence her. This is a time of history I don’t know much about and I find this series very well down. Where The Crown is constrained and muted, Victoria is alive and takes all sorts of twists and turns. It is broadcasted on PBS but I have only ever found it on iTunes. There are 2 seasons out now and I highly recommend it.
Brandi Carlile – My friend Joe introduced me to this artist when he was here the last time. Now normally, Joe and I do not connect on music. We never have and in fact there are many stories of the two of us travelling and not being able to agree on music. I liked my folk music, preferably slightly off key and he liked sleek, well-produced, female singers.3 She reminds me a bit of Lucinda Williams. Thus far my favourite songs are “The Mother and “Most of All.” She’s relieved 7 albums. Her style is folk with a little country twang. I love her.
Abigail Lapell – is a Canadian singer-songwriter who has put out 2 albums. She is a folk singer. I highly recommend her 2nd album. The stand out song for me is Night Bird and Morning Bird.
Right now, the main bright spots in my world are tv and my beloved crocheting. I have started my shawl4 and it’s making me very happy. I am hoping to have it done in time to wear it for some time this winter. This is literally the first thing I am actually making for me. So even in all the bleak there is a ray of peace and hope.
I confess to watching all seasons except for season 12 which, for some inexplicable reason, is not available on iTunes. This annoys me. ↩︎
Although if anyone can do it, Remini is going to be the one. ↩︎
Joe, if you disagree please jump in on the comments! ↩︎
The carpal tunnel surgery fixed that part of my hand but now I have neuralgia in my right hand in my thumb and first 2 fingers. This doesn’t really affect my crocheting until I’ve been at it for a couple of hours. I ignore it. ↩︎
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. ↩︎