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!

One year Ago: April 17, 2014

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.

 

 

My Hero

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.

All About Me

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!

Creature of Habit #HAWMC

Image credit: http://www.supermatchalatte.com

April 4:

The only habit that comes to mind at the moment is that every morning I make myself a matcha latte. I didn’t think it was a habit until a couple of weeks ago when I went on a retreat and didn’t have access to matcha (and forgot to bring mine along with me) and I really missed it! I always feel like I am doing something good for my body when I drink matcha in the morning because the drink contains so many health benefits. I also love the ceremonial aspect to making matcha, even though most days I have breakfast alone, it makes me feel fancy.

Good Samaritan #HAWMC

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.

The Key to Happiness

April 2:

I think the key to happiness is being with people who you love and who love you, spending time with them not worrying about what’s next. Being in the moment. I also think that we need to find the thing that we love and do it, either as a job or as a hobby. Whether it is teaching, writing, helping people, creating works of art, swimming or just watching a good movie.

We tend to be focused on results and productivity when we really should be more focused on the things that make us happy. We have one life, this is not a dress rehearsal and so many people squander their time on anger, resentment and grudges for no good reason.

I also believe that happiness is a choice, in any given moment, we can choose to be happy or we can choose to be angry and miserable. That is not to say that we need to be happy all the time. We definitely need to add some other emotions in the mix when we feel them so we can appreciate the emotions that feel good. It would get boring feeling happy 24/7!

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

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.

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/