laydeewinxstudiolo

A Cabinet of Curiosities


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Interstitial Spaces

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I know it has been forever since I wrote anything here… well that is sort of untrue, it has been forever since I published anything here. I have a bunch of half-written posts that I will probably never complete.

Why am I writing here again? I think the biggest reason is because I am lost and I need a venue to sort out these feelings and emotions that are just overflowing. This is my last semester as a Masters student, I have fulfilled all of the requirements to graduate except completing the thesis part, which I am currently working on.

The thing is, I have no idea what is next. I applied for the Ph.D. program in the Humanities department but thus far, I have not heard anything back from them. I think I have felt every single emotion there is – all the way down to feeling worthless and like my life has no meaning because of not hearing back yet – which isn’t healthy by any far stretch. That world is so cut-throat and competitive that one tends to lose sight of the real world. Somewhat like when I worked at Freestyle, everything was so small and cloistered, you are so busy that you do’t have time to stop and look around you.

This needs to be a very important lesson for me, I am not my grades, I am not my pieces of paper. If I don’t get in I have a very good plan ‘B’ that I have talked about and will put in place. I am valuable, I am worthy, I do have something to contribute. I just need to remember that and get out of the tower more.


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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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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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Ode to an Old Friend

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You go by different names – gleevec, imatinib, imatinib mesylate; and have many nicknames – orange bullet, magic bullet, lucky charms just to name a few.

We have known each other for six-and-a-half years now. You have been with me every single day for all of that time, in my thoughts, in my heart – I am so very grateful that you have been there, loyal, steadfast and true.

We knew each other’s quirks and patterns. I knew how to keep you calm and you knew how to keep alive. But now it is time that our paths need to part. Our relationship is no longer as effective as it once was, though that is not to say that we can not revisit each other in the future.

It has only been a day and a half but I miss you already. It is strange how my habits and patterns revolved so heavily around you, every meal, every snack, every outing with you in mind… always omnipresent. You became a ubiquitous part of my life and my daily routine and I thank you for that time, the time that we shared together – even if it was rough sometimes.

I have been told that I need to make a new acquaintance, one that I have been leery of for a long time, one whom I understand is not nearly as kind as you were.

I wish I could stay with you, that was the plan – what went wrong?!

Thank you Gleevec, for giving me six-and-a-half wonderful years. In those years I completed my BFA, started my Masters, travelled a little, learned a lot about myself, met some wonderful people and most importantly had a lot of cuddle time with my love.

Sutent and I will meet on Thursday, and I really hope it is not a dramatic relationship!

Ever hopeful, ever dream-chasing,
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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My Hero

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April 6:

I have a few people that inspire me and who are the most special people to me in the universe. Here they are in no particular order:

My husband: he is one of the best people I have met in my life. He is kind, funny, cuddly, tall, handsome, loving and just plain fun to hang around. He never talks ill of anyone, and lives life with such gusto and zeal. I am very lucky to be his wife, his best friend, and the nutella to his peanut butter.

My grandmother: My grandmother lived with us when I was growing up so I got to spend a lot of time with her while my parents were out doing whatever it is that they did when they would go out. She taught me how to be strong, how to cuddle, and when to walk away from a fight.

My film animation teacher at Dawson: “David” We met by chance one semester after one of the classes that I had chosen did not fit the criteria of what I had left to take for my DEC. Oh boy! What an amazing and wonderful chance meeting that was! Our teacher/student relationship blossomed into a very long term friendship. The type of friendship where we would talk for hours about anything and everything. So many of my memories involve David, and so much of what I do, see, experience, reminds me of him.  I saw David for the last time in July in the same spot he always was, doing his crossword. He died in October. I still always look for him when I pass by his “spot.”  I miss him terribly.

The Chair of the Art History Department: This amazing lady is soft spoken, super intelligent and oh so strong. She is one of the kindest people you will ever meet, but she is also firm and fair. She is the type of person that I aspire to be like. Beautiful inside and out.

My oncology team: These are a bunch of the most amazing people. From my pivot nurse, to my oncologist, to my surgeon(s), all the people on the tumour board, all of the radiologists these people are true heroes who work so hard to help me (and the rest of their people) be well and feel well. Without them, I would not be here.

All of my Life Raft Group gister-sisters and brothers and everyone else I have met through this journey. For how classy, upbeat, kind, driven, and all around inspirational they all are in the face of such a scary disease.

Our dog Ludwig: For being a pest, a cuddle-puss, and jester. I can not imagine life without him!

Sarah Brightman: her music is sublime, so etherial and it makes everything better. She is also a fellow DreamChaser. I hope to meet her one day!

John Ritter: My idol.