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I have also updated my YACC profile which was wildly out of date, the link for the updated profile can be found here: http://www.youngadultcancer.ca/story/samantha-wexler/ so far I have received some really good feedback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