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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.


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!