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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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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.

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