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A Cabinet of Curiosities


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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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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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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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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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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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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