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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Playing for Keeps

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Most of the time I am involved in the day to day activities of a Masters student. I am a TA, I grade papers, I research, I write papers and of course I look at a lot of art. This is pretty much my ideal career path. I love what I do, more than anything else I have done before.

Then there are days like today, when I take a moment to think about everything that has happened in the past little while. It is these times that I realize that this health stuff is for keeps. That pain or the digestive issue are going to be my constant companions for the rest of my days. For the most part, I am ok with that because – lets face it, I am here, I am able bodied and I have a really good team supporting me. At the same time, it is sobering to realize that the body that I once had will never come back, that this is what is referred to as a “new normal.” I have a really cool scar (took 58 staples to close it after surgery) along and across my abdomen that makes me look like I got into some sort of crazy knife fight and various smaller scars from other procedures and interventions that map out the different incidents and interventions that have happened to me over the past two years, but these marks are just one part of a larger story of what makes up “Me.”

I have to wonder, what my insides look like after so many interventions because much more has been done on the inside than on the outside. Scar tissue, embolizations, RFAs, necrotic tissue, radiation – these are all permanently etched into my organs and my flesh. Each mark having its own history upon my body. Each mark whether visible or not changing me, changing the way my body works, changing how I function. Each scar a reminder of things that went wrong at one point or another, marking moments where my life has been saved.

Oftentimes, people will look at me if I am seated in the metro as if to say that I am taking up the seat of someone who really might need it. Little do they know what I am hiding under my clothes, under my skin. Little do they know what my body and my mind have been through, and is still going through because this chapter of my journey is not even close to being completed.


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Be Positive Mantra

I am understanding more and more how the “just be positive” mantra is really hurtful, especially when one is scared or unsure about what is going on. Hearing someone dismiss those feelings by saying “be positive” really makes one feel like they are doing something wrong when they don’t feel like sunshine and rainbows.

I realize that if I have an off day or two, it will not affect the outcome of any tests, scans or what-have-you. Being dismissed with a “be positive” when trying to convey your feelings to someone is really frustrating and undermines the trust that I might have when talking to certain people about serious matters. I think putting on a fake smile it more detrimental than acknowledging a rough day and letting the wave of frustration/sadness/fear wash past. I think the most important part is to acknowledge these feelings and not squash them down. Our society lately has seemingly become so afraid of things that are not pink and pretty that no one really wants to talk to or approach others who are going through a rough time.

Just because I have feelings other than positivity does not mean that I am inherently negative, in fact I am generally a very positive person. I am beginning to understand the value in not compartmentalizing how I feel all the time, but I am also aware enough to know that I do not want to unpack and set up roots in “negative town.” I know this uncomfortable moment will pass, as they always do and things will look brighter, but sometimes it would be nice to talk to someone who doesn’t dismiss these feelings with a “be positive” or “at least you have ‘x’…”

All this to say that this is a weirdo moment in time containing many more questions than answers. I know that I will eventually get the answers that I am seeking – it is just taking more time than I am feeling comfortable with and “feeling positive” is not always possible when serious things hang in the balance when there are so many other emotions that are being felt at the same time including but not limited to fear, frustration, anxiety – this does not mean that I am not grateful for the wonderful things that are in my life, I am always so very grateful for the wonderful things and I do not see why I need to defend that every time that other emotions come into play.

Sometimes it is not about other emotions at all, sometimes it is just about the reality of circumstances. No matter how much I “think positive” it is not going to drastically change any scan outcomes or whether or not I will get an ‘A’ in a class, or if I will ever be able to safely go to the gym and work-out again. These things are often beyond my control, as much as I hope and wish for that ‘A’ or a clean scan, if positive thinking were the only way to get the things that I want, I would be a millionaire philanthropist who donates time and money to art centres and cancer research. Every time I say something and someone says “think positive” I get angry. I know they mean well, but at the same time, it sort of comes off as a verbal tick – sometimes it is just nice to hear “oh man that sucks” rather than a mantra that is just going to make me feel even more isolated and empty.

Now, I must get back to writing my last paper of the semester!


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One year Ago: April 17, 2014

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One year ago today was the single most scary day of my life. It was the day I came very close to bleeding to death, very suddenly. It was the day that my very last paper for my undergraduate degree was due. I had been experiencing some pain for a couple of days and was mentally monitoring it, I knew that if the pain got any worse that I would have to go to the hospital and see what was going on.

That day I was putting the finishing touches on my paper before having to go and hand it in to my professor. As the day progressed, the pain was getting more pronounced so I took a heavier painkiller to be able to muscle through and finish my paper on time. As I was chatting with my husband on his lunch hour, the painkiller just stopped working, as if someone flipped a switch, I told him what was going on and he said that he would come straight home so that we could go to the hospital together. I then emailed my professor and let her know what was going on.

Having to call an ambulance for yourself when in extreme pain is one of the scariest things to have to do. I was hoping that the dispatcher knew that I was being serious and not kidding around or anything like that. Luckily, the ambulance arrived in what felt like an eternity, but I know it was only a few minutes. My husband arrived home shortly thereafter and was able to ride with me.

While in the ER, they brought me to the trauma room and set to work stabilizing me, bags of fluid, blood transfusions, platelet transfusions, they stuck an NG tube in to empty the contents of my stomach, questions, before they brought me for a CT scan they put some defibrillator paddle pads on me (just in case which freaked me out) and then to angio where they finally, and unceremoniously put me under without warning. I remember them wanting me to lay flat on the table for embolization, I kept asking for a painkiller because I knew I would have to stay still for the procedure but was in a lot of pain… anyway the next thing I know they are waking me up two days later in ICU.

In total I was in the hospital for 6 days, final diagnosis: haemorrhagic shock brought on by necrotic tissue slitting open in my liver caused by metastatic disease.

Since then, I have had 5 CT scans, 1 MRI, a right side portal vein embolization, open RFA surgery (58 staples), 10 blood transfusions, 1 embolization because of tumour bleeding after the RFA, 1 8 grey dose of radiotherapy, 1 cardiac ultrasound, 1 PET scan, a closed RFA and multiple blood tests and doctors appointments.

Now, because of all of these procedures it makes reading my scans very complex, so my case has been brought to the tumour board – again- to see if exactly what is going on can be deciphered. I sometimes wish that there was someone I could talk to who would be able to tell me that it is going to be ok, but the truth is, no one knows. The truth is I could bleed again at any time, anywhere.

Through all of this, I have remained a student, graduated with my BFA, started the Masters program (part time) and worked as a TA this semester.

 

 


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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


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Pre-Birthday Thoughts

Every year around this time, I take inventory of where my life is, how far I have come and where I want to go. This year is a little bit different in that I have been seriously questioning whether my voice, my presence, is strong enough. Along with having something rare, I also tend toward the introverted side of life so sharing and being open does not come easy. At the same time, I want to share, I want to be open and let people know that I exist.

Sometimes, I am not sure how to do that, it often feels like people got there before me, or I am too old, or too young, too rare, too experienced and that my voice does not matter or that I am one voice among a constellation of others vying for attention. The notion of being forgotten leaves a mark that can not be erased, what if I do die in the not too distant future; will I be remembered? Will my voice simply fade away? Will anything I have done matter at all? Right now, I am not so sure, and I want to change that, even if my voice is shaky.


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Unicorn in a Strange Land

It is rare that I feel safe, I mean really safe. The kind of feeling you get when you know that everything is going to be ok, when life is stable, when there is a routine. That is not my life, or at least not a large chunk of it anyway. I hope that this will be a safe space to share ideas, laughter, triumphs and the more frustrating aspects of this crazy ride we call life.

Over the last little while, I have been encouraged by several people to share my story. The story of a unicorn in a strange land. This blog will be multifaceted in that it will contain elements from all facets of my life and not simply focus on one area.

To get me started, here is a guest blog that I wrote for the Cancer Knowledge Network: https://cancerkn.com/unicorn-strange-land/