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A Cabinet of Curiosities


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A Couple of Updates

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After a few of weeks of finagling with our insurance company, I finally received my first shipment of stivarga on Monday; which I started yesterday. Other than having to eat a low fat/low calorie breakfast 30 minutes before taking it, there is not much to report as of yet.

My doctor suggested that I start off on the lowest dose (1/4) for a week, then 1/2 the next week, 3/4 the week after and finally see if I can tolerate the full dose by the fourth week. I have heard that few people can tolerate the whole 160mg dose and stay at the 120mg range and do better in terms of side effects. We will see how it goes. I am cautiously optimistic that stivarga will work well for me.

I have to admit that this drug is a lot more sensitive than any other drug I have been on. After opening which I have to note the date on the bottle, if the contents are not taken in a certain amount of time, it must be properly discarded (by bringing it to the pharmacy for them to dispose of) and I have to keep the anti-moisture packet inside the bottle at all times. I have to admit that the bottle itself from a packaging standpoint is really adorable because it is so tiny and square!!

Otherwise, I have been really absorbed in my class this semester. It is so interesting because it examines the intersections of art pieces that were created during the period of the discovery of the New World and how items from the new world found their way into paintings and other art forms that were either brought back to Europe or were created in Europe. This is a point of view that is not often examined in the art history world. I am really glad that I decided to take this class at this time. Bonus – it is being taught by my thesis advisor!

I have also updated my YACC profile which was wildly out of date, the link for the updated profile can be found here: http://www.youngadultcancer.ca/story/samantha-wexler/ so far I have received some really good feedback from the update, so that makes me very happy.

 

 


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Mixed Bag

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Image from: http://data.whicdn.com/images/150510810/superthumb.jpg

Whenever scan time rolls around, all of the familiar feelings of anxiety and stress pop up. I am the type of person who likes to do well on exams and tests, but this is not the type of test that one can study for, nor is it the type of evaluation where if I do poorly, I can request a do-over. Whatever happens, good or bad; I am stuck with the results until the next scan. That is not to say that things can not change in between scans, I just will not know until the next scan. The one thing that I have learned in the past seven years is that everything is constantly changing, nothing is permanent – even if it seems dire in the moment.

I recently had a scan to see how the TACE procedure I had in November did. Overall, the results of the TACE were quite positive. The tumour that was the most concerning shrunk a bit, some grew slightly and others were stable (!)

However, tumours in parts outside of the liver have grown in size and a couple of new ones appeared  which means that now we have to get them under control. In light of this, my oncologist spoke to my husband and I about a couple of options: either go up to 1000mg of Gleevec (which I have never heard anyone do because 800 is already very high) or switch treatments to the third line drug that is approved in Canada called Stivarga. His leaning was towards changing for the time being – so that is what I will be doing in the near future. I am not entirely sure what day, but soon.

It is confusing when getting a mixed bag of results, on one hand I am happy the TACE worked, but on the other hand I feel frustrated about the progression seen in other parts. It sort of left me feeling discombobulated for the better part of the weekend. Not because I am pessimistic, quite the opposite, just because I would like to have had some good news without the added “but…”

The side effects for this drug have been described as unfriendly, but somehow I feel better, perhaps even cautiously optimistic, about this drug than I did about Sutent; which I took in the summertime. Luckily, I have a very good team who have encouraged me to contact them should I have/feel anything concerning. I feel so protected and supported by everyone on my medical team.

In the fall, I started to change how I approached my thinking about living with gist. I had read a comment left on the Stupid Cancer FB page that completely made sense to me, about how cancer cells have forgotten how to behave properly and if you talk to them and tell them that help is on the way you approach your body with love and compassion rather than as a war zone. So, now I am more mindful about how I think, how I talk to myself and when I take my medication I tell my cells that the help they need is on the way. It is funny, but I feel more at peace with myself than I did when I was trying to do battle from within. Now, I can see the benefits of this type of thinking, I will make even more of an effort to be more mindful of my thoughts and talk to my cells more about how to behave to let them know that I am here to help and send them help.

We will see what this new adventure brings… For now, I am loving my class, looking forward to working on my thesis and doing things that “normal people” do.


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End of Semester

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As with every end of semester, I am once again feeling inadequate in my ability to write in a proper academic voice and question whether I really belong in academia or not. It seems from my perspective that everyone is so far ahead of me – joining groups, applying for funding, getting to speak at conferences, and just generally seeming more ‘with it’ than I actually feel. Apparently, this is normal when being a graduate student who is pursuing a career in academia.

On the other hand, I need to reflect at how far I have come this semester. I missed the first two weeks of school because I was hospitalized with not one but two internal bleeds, my platelets had completely dropped out and, to top it all off my liver was very unhappy causing me to be jaundiced for a couple of weeks. During my hospitalization, I had two procedures to stop the bleeding, 3 platelet transfusions and 5 blood transfusions. I was also told that the drug that I had been switched to only a short time before was not working and it was discontinued. I was then put back on the original drug I was on and sent to radiology and a liver specialist to discuss TACE – and with that I entered uncharted territory medically speaking. I am a unicorn of unicorns.

During the semester, at times I would have up to three hospital appointments per week – every week, as well as a couple of procedures tossed in for good measure. Keeping up has been a challenge because as an art historian, there is a ton of reading and writing about what had been read. Having so many appointments was not only time consuming, but also very distracting because everything that happens in the appointments had to be processed and assimilated, as well as recovery times from the procedures to contend with.

When people talk about grad school being the hardest thing they have ever done, I wonder what they would say about what I went through this semester… When I feel like I am failing or not good enough because I am not part of the executive committee of an academic group, or because I missed the deadline to apply for government funding; I need to remind myself of everything I have lived through and that the most important part is that I am here, living, loving, studying. Everything else is chocolate sauce.


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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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What is Wrong with Being Whimsical? 

  

  

It is no secret that I am different. I think differently, I dress differently, I am usually on the opposite end of any kind of debate, not always by choice but sometimes by circumstance. And of course I have to be medically different which can be very isolating because no one ever really knows what to say because either they don’t remember what I have or they just don’t understand it at all.

So it comes as no surprise that my thesis topic would be completely different from everyone else, both in subject matter and theme. While everyone is learning more about Aborigonal rights and post colonial issues, looking at art through a feminist or LGBTQQ lens, or focusing on an artist or place that particularly moved them – I am going back in history to examine a mythical creature as depicted in art through to the journals of explorers of the  New World. 

At first I thought my topic was awesome because it was so different, but then I started to feel somewhat socially irresponsible that I was not looking at something that would have more of a contemporary impact. In fact, I started to feel embarrassed about my topic. I had a bit of a rough start to the summer and ended up not working on my thesis very much at all. I even started doubting whether I should return to the masters program or not.

For the past little while, I have, through various means, been trying to motivate myself to want to go back. Then, I found this meme with a quote by Stan Lee which I have added to the top of this entry. It made me think about my thesis topic and how it was ok to be whimsical and entertain my audience, because other parts of my life are so very serious that sometimes I need a break to focus on something different, something that will transport me somewhere else, a different time and place – even for a little while.

As Mr Lee says: “Entertainment is one of the most important things in people’s lives… I feel that if you are able to entertain people, you are doing a good thing.” 

… and so I ask myself: Why can’t I be the authority on unicorns and mythical beasts? Why should that be embarrassing? There are still a couple of weeks before school starts again, but I am feeling a bit more confident in my chosen topic. 
If nothing else – it will be memorable! 


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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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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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Good Samaritan #HAWMC

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April 3:

One of the kindest acts that I can think of is from las summer. Right after my surgery, on the day that I was being released, my parents were supposed to come and visit me, but decided that they would not since I was going home. They had previously offered to bring me home, but for some reason they changed their mind that day. This meant that I had no way to get home other than the bus. This was not a prospect that I was really looking forward to since I was severely jaundiced and had 58 staples holding my abdomen together.

My cousin caught wind of what was going on and contacted my husband and I and stated that she was coming straight away (from across town) to bring me home. This was not planned, she basically dropped everything at a moment’s notice to be there for me. Not only did she bring us home, but she also brought bags of groceries and food that she and her neighbour had put together for us. I will never forget her kindness and generosity.


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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/