Since I have been home from the hospital, I have gone through my usual routine of being a hermit – or so I thought. Usually after any of my surgeries, I spend a lot of my time recovering quietly. Sure, I will go out the odd time, but always try not to make those times too social. I am never interested in talking to anyone – I just enjoy the peace and quiet. So this time I have been the same way, except I should be starting to turn the corner by now. I have been in a “funk” emotionally for the past few weeks and could not figure out what was wrong. At first I thought it was the recovery process, and then I thought maybe it is the stress of the wedding. Both of those do play a part in the way I am feeling, but they still were not enough. Yesterday I finally broke down and figured it out. I’m entering into a world of unknown. I have been here before, last summer to be exact. I had a successful surgery and entered into the “monitor” stage, only to find out after my first scan that everything was back. So this time I do not have the same delusions in my head that maybe, just maybe, I have finally beat this cancer shit. After my post op this week I just am left to sit around until October when I will have my next scan. It weighs so heavy on my mind.
If you are reading this and wondering how my surgery went, I apologize. I was called by my surgeon 3 weeks ago and told that he had to bump me. There was a patient he had who has a more complicated problem and needed my time slot. So my new surgery date is July 5th. I have been asked a lot, “How do you feel about that?”. Truthfully – I feel fine. I’m confident my surgeon wouldn’t have chosen me to move if he did not think that I would be ok.
The other interesting piece of information I found out recently is that I will no longer have to go back on chemo. During my post operation appointment, Dr. Jay let me know that after my last lung surgery I would be put back on chemo, particularly Oxaliplatin (or Eloxatin). This is the drug that is used in the FolFox treatment. I spoke up faster than he could finish his sentence and let out a big “Hell no”.
If you want to know why I was so fast to react – please refer to my posts in October 2015.
Dr. Jay was quick to respond and let me know that this was the only drug which is proven to work with cancer that has not yet formed a tumour. But my answer was still no. I am one of the rare people whose bodies cannot handle this drug. I told Dr. Jay that my oncologist would back me up but he wasn’t hearing it. I get it – I am known to complain about being on chemo because I hate it. So I assume he just thought this was me being dramatic. Jokes on him.
A few weeks ago I met up again with Dr. Jay and he let me know I was right and he should just listen to me moving forward.
What he did say however is that he had a meeting with my oncologist and THEY decided that I cannot be on FolFox. It does not react well with my body and it would do more harm than good.
So – no more chemo for me this summer. This news is amazing because I really didn’t want to be sick and bald for my wedding in September. I am slightly worried however. I have been off chemo for this long before and just exploded all over again with tumours. So I am being cautiously optimistic. Not one of my doctors is saying, “After this next surgery you will be cancer free and we will never see you again.” Actually what they have said is, “This most likely won’t be the last operation you have – just so you know.”
Every little ache or pain I have, my mind begins to wonder – Is this THAT bad? Should I go see a doctor? I’m always nervous to go to a walk-in or the hospital because when new doctors find out about me, they run every test known to man. Here is a breakdown of my train of thought:
So a little bit of pain in my back is probably just a pulled muscle right? Hold on let me google it…. Ok the organ located in that area is the right kidney…. So is the pain from a muscle or is it my kidneys? Well I’m having no problems in the bathroom so it must just be my muscle….. But it is so close to my liver – maybe it’s just my body healing from the surgery….. Or it is the cancer that jumped from my liver to my kidney….. Ok I will just wait one more day and see if it gets worse.
Here’s another one that also happened this week:
Hmm, my seatbelt is rubbing on my incision site – that’s not comfortable…. Ok where it is has been rubbing for the past few days seems to be irritated – I’ll just hold the belt away from it…. So it’s been a week and the irritation has become larger and now even if my shirt floats by it, I feel like someone is sticking their finger in an open wound – I’ll leave it a few more days…. Hmm my shirt feels wet, oh that’s because it wasn’t swollen it was infected and filled with puss that has seemed to have popped open in the night…. Guess I’ll call the doctor – maybe I should have gone earlier?
I can’t run off to the doctor everytime I have an ache in my body – I would live at the hospital (even though I already feel like I do). However if I leave things and they are something serious, then I am just hurting myself and making things worse. I’m sure I am not the only crazy person out there.
Since my diagnosis I have not participated in any outside program related to cancer. At first I was uncomfortable with the idea of identifying myself with cancer. I am not one to just bring it up and a conversation. Who really wants to hear depressing shit? The only place I have felt truly comfortable saying whatever is on my mind, is in my colon cancer group. There, everyone has the same problems more or less. During one of those meetings the opportunity was presented to volunteer at a local hockey game to promote Colon Cancer Awareness Month. I was intrigued and thought this would be a perfect way to start giving back.
When I received the information on what we would be speaking about, I discovered it was not so much about colon cancer, but more about promoting a new website entitled “Cancer IQ”. We were encouraged to try it out first. This site asks the user approximately 15 questions, and then identifies what their risk factor is for a specific cancer. I decided to fill out my form based on myself one year ago – before my diagnosis. To my surprise my risk for colon cancer was only 10%. Is this site useful? Absolutely – it brings awareness to the user, and maybe reminds them to go and speak to their healthcare professional about being tested. What this site does not do however is ask the right questions. The biggest sign for colon cancer is all about the way your poop looks. Is it pencil shaped? Is there blood? Is it a solid or a loose movement? These questions would greatly help determine whether or not a person should be concerned. But no – not one single poop question. No wonder I only received a 10% risk factor. Imagine someone like me out there took this? They would pat themselves on the back and go back to sleep. No worries in the world. Wrong.
What does this teach us? Do not take one opinion as the be all end all. If you have concerns, ask around. Each person will provide you with a different piece of the puzzle.
I find it interesting when I speak to people these days, I consistantly hear the word “journey” being used.
“Oh what a journey you have been on this past year”
“I bet you can’t wait until this journey is over with”
“Just think in a years time you can look back at this journey you went on and laugh”
I myself may be guilty in the past of using this word in order to help describe my current situation. The truth of the matter is, this is not a “journey” for me – this is my life. There is no end to this experience. After my lung surgery, when the doctor annouces I am cancer free, that will just be the end of one phase. From everyone on the outside life will go on. Slowly the fact that I had cancer will become just a memory for them. New people will come into my life that will not even know anything I have been through. For someone with cancer however – it never ends. There are side effects from every surgery – phantom pains, scars, etc. – these are things we have to just suck up and deal with because we exchanged them in order to save our lives. Every scan creates a mound of aniexty for the chance we will be told bad news. Every time there is the littest amount of pain in a new area – the thought that our cancer is back will instantly enter our minds. This is no journey, because journies usually have a end point. We cancer survivors forever live in the “for now”. In May when my surgeon enters the room with a big smile on his face, and annouces that I am officially cancer free – inside my head I will be saying, “for now”.
I should be more fucked up. I mean seriously – what kind of a mind fuck is it to be told pretty much you are on deaths door, to all of the sudden having some surgeries, doing some chemo, and then being told – oh wait, never mind, maybe you will have some years ahead. I think I can attribute my sanity to the fact I have always been more focused on other things.
Before my first surgery, my mind was not thinking about my doctor pulling and poking at all of my organs, but was more focused on how many people would prefer a burger over a hot dog at my BBQ. In between my first and second surgery I was not caught up in the horror from the first, but more focused on making sure I was well enough to go to Arcade Fire back to back. During my chemo in the Fall I was not spending day in and day out with thoughts of if it was even working, but more on what course at the University of Toronto I should take in January.
Today my focus is still partly on my health (obviously), but more on my school, my upcoming trip (yep – I am all booked for Punta Cana 3 weeks after my last shot of chemo), and then I am already excited to go back to work (currently aiming for January 2016). All of these things and more, I believe, have contributed to keeping me from becoming a crazy person. I am rarely thinking about the now, but more times than not I am focusing on what is ahead. Do not misinterpret what I am saying here – I LIVE in the now. I do pretty much what I want day in and day out because it makes me happy. I am saying my mind however, is always racing with plans for the next big thing.
I know I have spoken quite a bit about the changes in my body – but I am a girl so obviously this is a major issue for me. When I first learnt I would be on chemo for about a year, I thought like most people do – weight loss central. This however is not the case with all treatments. Yes, there is that stereotypical look of a chemo patient with no hair who looks like skin and bones. Then there are the people whose drugs react in the total opposite way – like myself. My drugs not only cause me to never have a full feeling (that’s right, I can eat for days and never get the sense I have had enough) – but the steroids have also caused some serious ballooning of my body.
The stomach was an obvious stand out at first because, well, it started standing out. Then I noticed my thighs had a few more bumps than normal. The shirts I would try on at the store went from medium to extra large – and even some of those looked too tight. I went from my skinniest after surgery to my heaviest in a matter of months – and there was really not much I could do about it. I knew the steroids were causing my face to swell – but until I did a side-by-side photo – I did not realize how much.
Yes, I understand that gaining weight is much better than losing. I did not expect to be going through this and also look like a supermodel the entire time. As a young female however, our looks are still important to us. Well not even as a young female – I would say as a female in general. Heck, even some men would probably have a tough time with this. The scars I could care less about – but looking in the mirror and seeing back rolls (yep, thats right, I now have back rolls) – was more than shocking to me. If I haven’t said it enough, I am ever so thankful to have such a strong support system. They really come in handy when I am having a “nothing fits me” kind of day. And yes I know at the end of it all, a little weight gain in order to save my life is probably a fair trade off. I think I need to put that into perspective a little more.