I've heard the cliche 'compared to chemo, radiation is a cake-walk' and they're right. That's an apt cliche. I'm not trying to tempt fate by putting the cart before the horse in my thinking, but I think I'll be okay. The effects are apparently similiar to severe sunstroke. It'll probably get a bit worse as treatment progresses. The area getting treated will probably eventually blister and it'll be difficult for me to put on clothes, bras will be impossible and mobility will be compromised. But then treatment will be over and I'll be able to 'get on with it.'
I haven't put on my wig since my birthday, which was over a month ago. I'm not going to say that I regret buying it as it did offer me anonymity when I needed it, but I just don't care now. I go everywhere freely -even to the office- with just my hat and prickly head. My facial hair all but disappeared, and is now coming back. I found a long eyelash yesterday and was pretty pumped about that. My eyebrows look funny as they're mostly non-existent except for a few sporadic hairs that stubbornly clung to my face. Typical of something attached to me I think.
My hair is slowly growing back. Last week it was getting quite bushy, but it looked weird and felt like baby hair as the hair that didn't fall out was a bit longer and finer than the hair that was growing back, so Shawn and I once again shaved it. I want it to start growing back uniform and this act certainly helped. Soon I won't be getting the glances from kids at the mall, or the empathetic stares from seniors; I'll mercifully just be another face in the crowd, albeit a heavier version.
Let's address that: I was on Entertainment Tonight Canada a few weeks ago. I was on TV and the sound bite they used was the exact one I wanted them to. It was me talking about how even when I went to the mammogram office with a requisition from my doctor, they didn't want to give me the mammogram because I was 6 months away from my 30th birthday. I feel that by doing that, I have in a way accomplished one of my goals about being open about my diagnosis and bringing awareness to the fact that when the medical community talks about early detection being our best defence, that it isn't just that easy to take the steps necessary for early prevention. I should be proud of myself that I accomplished that. But unfortunately that feeling is overshadowed by seeing myself on TV. I was told that I would be shot from the chest up, but they included a clip of me walking through a hallway -which was a full body shot. I was overcome with embarrassment and anxiety when I saw myself. I was angry that they used that shot. I didn't need to see myself like that on my big screen TV, seeing that I took up half the screen and I apparently waddle instead of walk. I saw every one of my 50 extra pounds on that screen. I was shocked. I don't think I realized I looked like that. That isn't who I saw when I looked in the mirror. It is now so I don't look in the mirror as much, unless I'm doing so just to feel bad and sorry for myself, which does happen, I'll admit.
Isn't it awful that I have this outlook? That I am so hung up with my own vanity that I have allowed a split second image of my weight gain to overshadow such a powerful message? I think I've taken the reality of gaining weight worse than the reality of a cancer diagnosis. What does that say about my personality and my character? I'm disgusted with myself over this, both in the fact that I've gained all this weight as well as the fact that I succumb to negative thinking about it. It's truly sad, I know.
There are much deeper issues with my weight that I've dealt with my whole life, and I'm not getting into that here, but I'll say that I'm very hard on myself in that facet of my life, and I'd really appreciate if no one who reads this mentions it to me. I'm writing about it to see the words I've written and try to combat these self-deprecating feelings, not because I want to talk about it with anyone. Trust me and believe me when I say hearing others give me positive thinking inspirational messages does nothing more than aggravate me. This is a life long battle I have fought before and only I will help myself through it, which will make the victory that much more meaningful.
I have been really open about not having actively reached out as far as support, but I was contacted about being in a research study group regarding the sexual aspects of life after diagnosis as well as the sociopsychological effects. I was contacted right about the time I started chemo, and I agreed to take part in this study. It would be an hour of my time for one night a week starting in late February. My answers and feedback would impact treatment options going forward after your diagnosis. I was compelled to participate in this study. It would be a group of us sitting around in a circle talking about our issues. I would finally get some treatment for my feelings. I was excited about this and the more I thought about participating, the more positive I became about it. I would get to talk about my issues, and could even use the guise of cancer. What I mean by this is that I had issues before cancer (weight, self-image, etc) but now because of cancer I'd get help with that. There were two parts to the study. Everyone would be sent surveys to fill out over the course of a year. After you sent back the first survey, you would contacted to find out when the study group would start. There would be a small handful of people who would be randomly selected by a computer to participate in the control arm of the study (which means you would still have to agree to fill out the surveys, but you wouldn't get to benefit from the actual participation of the group). I was assured that this was a small percentage and most people obviously got to participate in the group. I just last week received the survey, and spent about an hour early one morning filling it out, checking the boxes that most pertain to my thoughts and feelings. I was crying while filling it out. Some parts just hit a nerve or chord with me. Things I hadn't even thought were affecting me were really bringing about strong emotions in me. Now I'm really looking forward to participating in the study and am really happy that I agreed to do this. I know it'll really help me deal with a lot of my issues, and in a private setting with others who are also going through what I am. I envision the help that I will offer and so positive as I'm sure they'll want to hear what someone my age has to contribute to this line of thinking and will want to engage me as to how I am dealing with these issues. I would assume that my age would be of great benefit to them on this point. Not to say older women don't have sexuality issues, but you get what I'm saying. I finished the survey and put it in the mail, anxiously awaiting the phone call that would instruct me on next steps.
I received the call two days ago. They had received my survey, thanks for sending that back. She starts talking to me about the control arm, and how I've been randomly selected by a computer to participate in that aspect of the study. I don't immediately get what she's saying, but it eventually becomes clear; I am in the placebo group. This basically means that I'll be helping them by filling out the surveys over the year, but I don't receive the benefit and therapy of being in the group. You've got to be kidding me! Statistically, this was such a small chance, but why did I allow that reasoning into my thinking? Have I not learned that statistics mean little to me in my life and have 'statistically' been piled against me? Yeah, I'm angry and upset over this. But I let out a big sigh and resign to this fact as well. I guess I shouldn't get upset about this as there's obviously nothing I can do about it, but it's the feeling of a carrot being dangled and then yanked away. I didn't get to taste it yet my mouth watered at the site of it.
This way of thinking is most likely why I've lately been absent on this blog. I've taken a little bit of a break from this writing thing for many reasons. One being that I've been back at work and when I pick up my computer it's to do what I get paid for. Another reason is that I haven't needed the outlet quite as much for myself as I'm glazing over the whole radiation aspect of treatment and just barreling through it to get to the finish line. I already have to talk about it every day with family, close friends, or people who ask me about it daily, which is draining enough without me having to visit this blog and also on top of everything write about it.
I can sum it up here. I go to the cancer centre attached to Lakeshore Health Centre in Oshawa every day, Monday to Friday. Shawn drops me off and goes to the coffee shop around the corner to read his paper and wait for me. We do this to save ourselves the parking expense, which is actually more than we originally thought it would be, and this way Shawn is still there for me as he wants to be but not every day sitting around a waiting room and spending a small fortune to house our car for an hour. I swipe my card at the electronic station, I sit down in front of the jigsaw puzzle I've been working on for the past week, a volunteer offers to get me coffee, juice or tea, which I usually decline, and then a radiation therapist comes and gets me. I'm only in the waiting room for a few minutes. The longest so far has been 11 minutes. They take me to my 'pod' and I change, everything from the waist up, take off my boots, put on the gown, put my stuff in a locker and sit down and wait again, pick up a magazine. They come out of the pod and call me in. I jump up on a gurney-type table that has a massive machine attached to it. This room looks like something out of Alien. It's a big sterile room with a huge foreign machine in the centre. There are radioactive warning signs everywhere, there's a big laser beam thingy on the ceiling and when I lie down, it's usually positioned so that the green light is on my forehead, which freaked me out the first time I lay down. I position my right arm above me in the straps they have and tuck my left hand under my butt. Two people hover above me and talk gibberish with their numbers and codes, and then they put a cold gel-like pad over my scar, where the laser will hit. The first time I went through this, I was waiting for a laser beam to shoot out of the device I can see above my head, the one where the green lights shoot out of. I thought that this is where the beam of radioactive light would enter my body from, but this is not the case. I held my breath the first time, but apparently those green lights are simply to align the coordinates and make sure my chest is positioned properly. The machine that twirls around my body is where the radiation comes from. That makes sense, but you fear the worst in these situations and ludicrous scenarios dance upon your conscious thoughts. Of course, simply asking the question is an obvious answer, but not one that occurred to me in the situation. My first day was all about getting it over with, not getting flooded with information. I didn't care, I just wanted to go through the process and see for myself what happened. I was anxious to simply get on with it. It was on my fourth visit that I finally started asking intelligent questions like 'where does the radiation come from?'
The longest part of the process is them setting up the machine so it is positioned correctly. Then they leave the room and the machine whirls around me and feeds radiation into me. I don't see this and I don't feel this. It's similar to getting an xray, except I'm lying down and told repeatedly to stay still. Which is always exactly the time that my nose gets incredibly and unbearably itchy. This process takes all of 7 minutes; 5 minutes to set it up and about 2 once they start process. I change and call Shawn and go wait upstairs for him to come and get me. It's about a 30-40 minute experience from the time I leave the car to the time I get back in it.
This is how it goes every day.
I can't promise to write much more on this forum. One because it simply is too exhausting for me now to have everyone knowing and talking to me about my deepest thoughts. I really felt the need to do that and educate people on what I'm going through, but if I'm going to continue being honest, I'll admit I find it pretty annoying now. I cringe now when my blog is brought up, mostly because people want talk about something so personal that I've written. That wasn't my intent with this. I wanted to inform, not engage. But you can't control that and I took that as part of the process of me writing and posting it publicly. But with all the other issues I'm going through right now, I've felt the need to distance myself from that aspect of my life; this aspect of my life.
I think I've done what I set out to do, which is inform and educate. I thank everyone who has taken an interest in my story, whatever your motivation to do so was. I am now concentrating on getting through radiation without feeling the need to write all about it. I need to eventually concentrate on my own health and perception, and I'll probably write about that, but right now I think that'll be too private to post. I'll owe myself honesty and I can't truthfully say it would be that way if it's on a public forum, and then that would negate the whole therapeutic purpose behind it. Weight is a personal demon for me and one that I find hard to be strong and positive about. I may post that whole process eventually, but only if I'm successful with my efforts! :D
Thanks to all of you who've followed along this quest for self-awareness. I feel that I wrote all this for a purpose. It's certainly not over for me, and know that all of your positive energy is reaching me and propelling me forward so I am able to tackle the next phase of my life, recovery.
Kelly McIvor
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