laydeewinxstudiolo

A Cabinet of Curiosities


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Favourite Christmas Gift


The view from the top of ‘Boob Mountain’

On Christmas Day, we were asked to go around the dinner table and say what our favourite gift was this year. I was the last one at the table so I had a lot of time to reflect on what my favourite gift really was, was it the Selphy printer, the Minnie Mouse charm? And then it came to me, my favourite gift was my health. Let me explain: The weekend before Christmas, some friends invited us to their country home in the eastern townships. We figured it would be an ideal time to go, right after I handed in my last assignment and when my sweety had the weekend off.

So Friday evening we dropped off the naughty-ham (our dog) and after our friends picked us up, we were on our way. When we got to our destination, it was suggested that it might be fun to hike up ‘Boob Mountain’ the next day, we all agreed that a hike sounded like a lot of fun.

Unfortunately, it didn’t occur to me that we’d be hiking on an incline… Our friend lent me a walking pole/stick which really helped a lot. There was a lot more snow on the mountain than we had in the city, in fact, we didn’t have any snow in the city at that point. The scenery of the trees and the snow was so picturesque, it was like being part of a perfect wintery scene. I had to stop a few times to catch my breath (everyone was super cool about the multiple stops), but I kept pressing forward higher and higher up the mountain until eventually, we reached the top. The view was breathtaking!!

Suddenly, I remembered the resident who had upset me so much in the fall by her words and her callousness. I thought of that day, and the juxtaposition of having just hiked up a mountain proving her wrong. I am currently at an intersection in terms of treatment, in January I will find out how well the TACE treatment worked. For now, I am grateful that I was able to hike up ‘mount boob,’ something that I would not have been able to physically do a couple of short months ago. I am someone who is normally very active, walks a lot, takes the stairs instead of elevators, so to not be able to do these things, even for short periods of time is very frustrating. To be able to make it to the top without being overwhelmed and asking to turn back halfway, was a big deal for me.

That was my favourite gift this Christmas.


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TACE

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I recently underwent a TACE procedure to try to shrink the tumours in my liver after the second line treatment (sutent) failed me. At the time, (last week) I could not find anyone who had experienced TACE first hand so I am sharing my experience in hopes that someone who is facing the procedure will not feel so alone and scared as I was. This entry has also been shared on the connect.mayoclinic.org page.

A little bit of history: My primary tumour is in my duodenum and I have multiple mets in both sides of my liver. I also have a bleeding issue where my liver randomly decides to split open and bleed. There is no rhyme or reason to it, and no way to prevent it from happening. It has happened to me 4 times in 2.5 years so it makes treatment options where internal bleeding is a potential side effect a giant no-no for me, thus we have to find alternate solutions. I was supposed to have a liver resection in summer 2014, but when the surgeon got there he decided that my liver “felt funny” and that it would not be safe enough to resect, so they did an open RFA instead.

Fast forward to this fall: There was not really any advanced preparation to do in the weeks before TACE, other than to make sure that my liver was strong enough to withstand the procedure. The procedure was set for November 12 and I went through the usual pre-op “speed dating” session where you get your blood tested (there was an extra, special TACE related blood test that they had to do… ), meet a nurse, meet a doctor, etc… Then I was told they would call me the day before to confirm. They called me Wednesday afternoon to tell me they had a bed for me and that I should admit myself later that afternoon (which was a bit of a problem since no one told me about having to be there before… but my husband and I worked out the kinks and we got there around 8pm.)

The fist thing they make you do is take an antimicrobial shower and put on the gown and any pj pants/slippers etc… you may have brought with you. Then they install (insert?) two IVs one on each arm, take blood pressure, temperature etc… and then they pretty much left me alone until 4:30am when they made me take another antimicrobial shower and then started the IV fluids. They said that they found that TACE works a lot better if your kidneys are functioning really well, so they keep you SUPER hydrated. They also inserted a foley catheter. I was also not allowed to eat/drink anything until MUCH later that day.

Around 8:45 they came to bring me to angio where there was a LOT of waiting around, bring a blanket and socks – it gets chilly. I forgot to wear socks and I regretted it, also bring easy to slip on footwear like crocs, or similar – just because after they remove the catheter you will be going to the washroom a LOT!!

Once I was finally in the actual procedure room, I climbed upon a really narrow table and they covered me until the prep person came. They had a lot of IV bags full of antibiotics, the chemo, anti-inflammatories, and morphene that they were prepping for later use. I asked about them all and they were super nice when they explained them all to me. So the prep person came and prepped the table of tools that they would be using and then prepped me. Be prepared to be shaved down *there* if you are not already. Then they put on disinfectant and a very large blue paper cloth that covered me from my neck to my ankles (I am also 5’8″ so I imagine it would cover a less tall person completely.) The person who was doing the actual procedure came in and explained that they were going to give me a local anesthetic and that they were going to put a hole in my leg to my femoral artery where they were going to place a catheter that would go up to my liver, then they “park” the catheter and inject the chemo and the other IVs mentioned previously, directly into my liver. They said the longest part of the procedure was the actual infusion. There were moments when he was going up the artery that he asked me to hold my breath. I was not sedated per se, but I was experiencing some back pain so they gave me a little morphene to take the edge off which made me very compliant.

When the infusions were over they removed the catheter and bandaged me up (I have a 1/4″ incision, not even enough for a stitch.) Afterwards, you are not allowed to move your leg for about 6.5 hours just in case you should open up the wound and start bleeding from the femoral artery – no bueno. They kept up with the anti-inflammtories, anti-nausea, and pain killers the whole time I was there so I felt pretty good, albeit sleep deprived. I was there from Wednesday 8pm until Friday around noon. The procedure itself didn’t feel like anything. But there is a big concern about pain and nausea afterwards, so they take care of you very well to make sure none of those things happen.

Now, I still have some pain, but honestly I have not been sitting around resting either, I have been going out and doing stuff. As a Masters student, it is necessary to keep moving. I am not sure how I would feel if I took a few days to rest, maybe the same, maybe better. I am not sure.

Follow up includes, 4 blood tests at specific intervals and then a CT scan in January to see how things are shrinking and then we will discuss doing the other side. They chose the left side this time because that is where my largest tumour is/was.

Laydeewinx


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All About Me

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April 5:

April 5th is also my birthday so it is a pretty big day!
I think my greatest accomplishment in the past five years is returning to university, post diagnosis and completing my Bachelor of Fine Arts (with distinction) and then getting into the Masters program. This is something I have wanted to do for a VERY long time but put it off as something that I might do in the future, if I had enough money. Truthfully, being an art historian/historian is the only thing I ever wanted to do since I was a little girl. I have always loved ancient civilizations, archaeology, anthropology, architecture and all things pertaining to art. Why I did not choose this path to begin with will always be a mystery to me. But, I am here now and I really feel that I belong in this field.

I have also been published several times in peer reviewed journals as an undergrad and in the Masters program. Even though some things are quite challenging, like the class on Settler Colonial Art History that I took this semester, I really love what I do – I just wish I had gotten here sooner!


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Creature of Habit #HAWMC

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Image credit: http://www.supermatchalatte.com

April 4:

The only habit that comes to mind at the moment is that every morning I make myself a matcha latte. I didn’t think it was a habit until a couple of weeks ago when I went on a retreat and didn’t have access to matcha (and forgot to bring mine along with me) and I really missed it! I always feel like I am doing something good for my body when I drink matcha in the morning because the drink contains so many health benefits. I also love the ceremonial aspect to making matcha, even though most days I have breakfast alone, it makes me feel fancy.


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The Key to Happiness

April 2:

I think the key to happiness is being with people who you love and who love you, spending time with them not worrying about what’s next. Being in the moment. I also think that we need to find the thing that we love and do it, either as a job or as a hobby. Whether it is teaching, writing, helping people, creating works of art, swimming or just watching a good movie.

We tend to be focused on results and productivity when we really should be more focused on the things that make us happy. We have one life, this is not a dress rehearsal and so many people squander their time on anger, resentment and grudges for no good reason.

I also believe that happiness is a choice, in any given moment, we can choose to be happy or we can choose to be angry and miserable. That is not to say that we need to be happy all the time. We definitely need to add some other emotions in the mix when we feel them so we can appreciate the emotions that feel good. It would get boring feeling happy 24/7!


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WEGO Health Activist Writer’s Month Challenge #HAWMC

I joined the WEGO Health Activist Writer’s Challenge which will give me a topic prompt every day for the month of April. Since I am a couple of days behind, I am going to try and catch up by posting a couple of prompts per day.

April 1: Selfie

Sam Selfie