laydeewinxstudiolo

A Cabinet of Curiosities


Leave a comment

A Couple of Updates

cakeroom-unicorn

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I have also updated my YACC profile which was wildly out of date, the link for the updated profile can be found here: http://www.youngadultcancer.ca/story/samantha-wexler/ so far I have received some really good feedback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

 

 


2 Comments

End of Semester

tumblr_static_tumblr_static_ay3j8293q0gssgws8wwo0oc48_640

Image from Tumblr

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.


Leave a comment

Ode to an Old Friend

love-sparkles

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

 


Leave a comment

Playing for Keeps

182407_10152636954700366_577213506_n

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.


3 Comments

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!


Leave a comment

My Hero

8315472164_3fe6f7704d_z

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.


Leave a comment

All About Me

10390496_10152509475065420_2181168523071649617_n

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!


Leave a comment

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/