Foot In Mouth

Something new happened to me in one of my groups the other day. I was new to this group at the cancer centre I go to, so I had to introduce myself, and then in turn they all did the same. I am so used to telling people that I haven’t met my story, that I can sum it up in under two minutes. I remember before it would take me so long to tell it, going through every detail. Then I realized that all the details were not needed and I could just skip to the main event. 

I have stage 4 colon cancer, I have had 3 surgeries and 12 rounds of chemo, I am now waiting on a scan coming up to tell me if I am cancer free or not. Actually, that is probably under two minutes. 

The social worker leading the group asked me to explain a little more about my surgeries and chemo. I let everyone know that the first two surgeries were extremely hard, and I am still recovering from them. My abdonimal section will probably never work the same again. I am in discomfort daily. I then explained how I had 4 rounds of chemo, then surgery, then another 9 and had to stop. The chemo was horrible and was hurting me more than it was helping so I chose to stop. 

After my complaining was over, the man next to me introduced himself. He was 33, stage 4 colon cancer as well. Then he went on to say he was diagnosed a year ago, still had not had a single surgery, and as had 26 chemo treatments so far. 

“Shit.” I said out loud. “I should not have been complaining.” He won the poker hand.

You may be wondering how he can have 26 rounds and still be out and about. Well when they give you chemotheraphy in order to help your cancer stay at bay, and know you will be on it for a long time, your dose is not as strong. It is still horrible, don’t get me wrong, but it is not the heavy dose that would happen if they knew the number of rounds you would be having. 

When I asked him who is surgeon was he let me know he didn’t really have one. He met a man when he was first diagnosed who told him he was inoperable, and that was it. He took that response and just moved on. He never got a second opinion……

I quickly grabbed a piece of paper and scribbled down the name and number of my surgeon.

“I’m not saying he will be able to do anything, but he worked miracles on me. The worst he can say is no, and then you are no better off than you are now.”

Last I saw him he had just had a CT scan, and him and his oncologist were speaking about sending it to my surgeon. 

Focused

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.

Body Transformation

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.

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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.

Halfway Point

 

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I am finally on the other side of my chemo treatments! Seven down only five more to go… for now? Had a good chat with my oncologist and he let me know I will get a break (thankfully) – but for how long is still to be determined. Now on to planning my travel life for this summer! My nurses in oncology as well as everyone else I seem to meet have all told me to get out there and start travelling. It sounds perfect to me. All I want is to get away from it all and have some good laughs and see some amazing sights. So the planning has begun! So far on my “to-do” list for 2015 is Las Vegas, New York, Vancouver, Florida, California, and maybe a beach resort getaway. Time to stop worrying about everything I cannot control and focus on what I can. Making valueable use of every moment of every day is my new “full-time job”.

 

Have vs Had

At what point in my journey can I use the phrase “I had cancer”? Is there any specific time that you can switch a “have” to a “had” when you have stage 4? Since the cancer cells in my body are just floating around like dust particles, I wonder if I will ever be able to speak of cancer in a past tense. If I forget about the microscopic cancer cells and just go by what we can see, can I use the term after my first clear scan? Or do I have to wait till that all coveted 5 year mark to finally say, “I had cancer”. Even when that time comes, is that a description I would want to define myself? I am so much more than this disease, but yet it seems to be in the top five of words used to describe myself these days.

Having a “planner” personality it is very difficult to throw all of my papers up in the air and just let life unfold as it may. I am always looking years ahead but now I find myself only being able to plan 3 months at a time. Right now I am not even sure what will happen next month as my next body scan is January 27th. That will determine a yay or nay to surgery on my lung. However if that scan is clear then in February, am I stepping into the “had” zone? Maybe it is when I am off chemo and all I have is scars as evidence of my battle with cancer. Maybe I should stop thinking so much.

Pig In A Blanket

A cold + shaved head + digestive struggles = a blanket wrapped couch potato.

That pretty much sums up my week so far. I’m pretty sure it is the cold that is the main cause of dragging me down – but the head shave this time around has kind of gotten to me. Yesterday I was wearing a hat around the house because I still have a hard time looking in the mirror. What does not help is the chemo feels like it is rotting away my insides. My stomach is constantly distended and I have to do laps around my house to help work any sort of gas through. Ya thats right I said it – gas. Everyone does it so stop being so grossed out. When you add chemo into the mix it makes every single thing you put in your stomach into a gas pile that wants to just live inside and fester forever. I have been forced to sleep on an incline because lying flat kills my stomach. Again gentlemen – my man loves me and I’m taken. Winning!

I am hopeful by weeks end I will exit this pig in a blanket look. It would probably help to start with a pair of pants that are not oversized.

Lung Tumour

It is hard sometimes to sleep when your brain will not shut off. Since I am such a planner with life, it has been hard to sit back and let things just play out. Two days after my last operation I had a chest CT to check on the progress of my liver regeneration. During this CT they discovered a small tumour on the upper side of my left lung. My doctors then went back in my scans and discovered there was a small glimpse of it on my original scans from April. At first I was annoyed of course. How was this missed? Then I came to terms with the fact that they were so overwhelmed by what my liver was showing, they were not looking any place else. They did however give me another CT in May for the sole purpose to check if I had cancer any where else. I already had two treatments of chemo under my belt at this point, and my surgeon let me know I was clear. Conclusion? My lung tumour shrunk enough after two treatments that it disappeared from the scan. Sounds amazing right? Well to me, not so much. From when they decided I was going to have my first surgery, to when I was able to go back on chemo after my second surgery, three months had passed. Three whole months without chemo. That little tumour was persistent and came right on back after the poison was out of my system. This is what worried me. What happens if after six scans the tumour is shrunk enough that they do not feel the need to operate? At this point I feel like I am a pro when it comes to surgery. I would rather have them get in there and remove the sucker with good margins, then leave it and hope that it just never comes back. With my mind racing around this topic I knew I needed to have a phone call with my surgeon. I explained my thoughts towards everything and here is what he had to say:

“I know this must be tough for you. You have been through so much and I understand why you would want the piece of mind. However, the tumour on your lung is very small and does not worry me. What does worry me is all the other cancer cells I think are in your body. Those microscope cells are what we need to focus on. If we have surgery now, you will be off chemo for 6 weeks, then we would operate, then you have to recover for another 6 weeks. That is too long to be off treatment again. I have asked you to trust me many times, and so far your trust in me has paid off. So I ask for you to continue with that trust. In January we will have another scan and reassess your lung tumour. Until then stay strong and fight through the chemo. With your liver being much weaker than before, I am not surprised this is taking a bigger tole on you. Do not worry and keep going.”

That is obviously not word for word, but pretty much bang on to what he had to say. A quick 5 minute phone call instantly calmed me down. Yes, the cancer that we cannot see in my body scares me. Yes, every chemo treatment so far has sucked, and I am sure will continue to suck. But the fight must continue. I have to trust in my doctors that they know what is best for me. I’ve gone from inoperable to operable in less than 6 months, so I am becoming more and more positive that I can truly beat this.

Chemo Sucks

Well I can finally say I understand what chemo is really like. It started at around 12:00pm yesterday when I began to feel the full discomfort from the drugs. I was hot and cold at the same time and extremely nauseous. Thankfully I had a good friend by my side who consoled me while I shed a few tears (or a lot, but who’s counting). Coming home it only got worse. The nausea persisted and even made me physically ill throughout the night. If this adventure couldn’t get any more fun, I received a call today from my nurse that my oncologist is putting me back on the daily injections for white blood cells. Oh, and they are refusing to provide me with and at home nurse even though I explained in detail how bad my anxiety was last time.

This next step in my journey I can already tell will not be fun. Who would have thought after two invasive surgeries that it could get any harder. I know the overall thought is – it has to get a little harder in order to be better on the other side. But that is easier said when you are healthy and don’t feel like shit. So those happy people who I know are saying it to be nice – can screw off for now. Sorry.

Before

Dealing with my pain daily has become normal for me. Who ever thought I would say that? I feel like I have not been myself since July 20th, the day before my first surgery. All of the shit I went through during my hospital stays and all the days in-between really changed me. Obviously I will never be the exact same person I was back in early April 2014, but I would like to at least get back to the person on July 20th. Before I knew how scary life really can be. Before I knew what death looked like. Before I became used to being stabbed with a needle multiple times a day. Before I became comfortable just lifting up my gown to whoever came in that resembled a health practitioner. Before I knew what withdrawal feels like coming off of a pain medication. Before I knew how many days my body could go without eating.

My surgeon is amazed by how “well” I am doing. He says my fallen appetite is normal and most patients of liver surgery lose up to 25% of their body weight – so my 10-15 pounds is nothing. My first surgery was invasive, but he let me know my second was 500x more invasive, and I should lower my expectations on recovery. That is easier said than done. The way I feel in my head does not match the way my body is responding. “How bad do I really have to pee?” – I question this about every hour. That involves sitting up, walking to the washroom, and trying my best to sit on something not even close to comfortable. You try sitting on a toilet without using your abs. Near impossible.

Chemo is starting again in 2 weeks. A new friend appeared on my upper left lung that I now have to tackle. My body is not as strong as it was the first time I was on chemo, but my blood work looks good so back into the stadium I go. Bottoms up to the chemo cocktail.

The Many Faces of Jamie

 

Now that I have been off chemo since June, all of the chemicals are right out of my system. What does this mean? Hair growth – and I was just getting used to never having to shave. My head hair is not sparse, and is growing in quite thick. I look less like a cancer patient and more like a girl who just chose to cut her hair short. I still wear my wig for more public outings like a nice restaurant date. I look at it like an accessory. Yes, you can go out with no jewellery on and still look nice – but do you not feel that extra dolled up once you have bling’d yourself out? That is how I feel about my wigs. I am confident in public without them, but I feel that extra special when I am wearing one.

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The one thing that is really getting on my nerves now is when I am asked for ID. I have always loved going to the casino, but since my diagnosis I find I am going more often. It seems to be the only place where my brain shuts off completely, and all I think about is what machine I should sit at next. A full mind vacation. (Do not worry. I have discussed this with my therapist and she said it is perfectly healthy.) So as you can imagine I am now being asked for ID more than usual. Every single time I am now, it is a long process. I guess I look extremely different without hair? (I beg to differ). Honestly, there are moments after countless signature signing that I am tempted to just lift of my shirt, show them my wound, and ask them “Now do you believe me?”. I know it is there job but come ooonnnn. Next time I go I might just wear a wig. When they ask me to remove my glasses, maybe my hand gets caught a shifts my hair back. Give them a good scare. I would love to be asked to remove my wig in public. Oh the words I would have for that guard.