My Cancer journey has been simply that, MY journey. Often that can be really hard for folks to process. I can hear you saying "What do I mean by that?"
Well, I think you would be surprised at how often I am told, "my friend didn't do it that way". Although we may have the same diagnosis, it's really important to remember we are all on a different path to recovery.
Speaking of that path, it is time to enter phase 3... When I was diagnosed we knew that there would be 4 big phases of my treatment plan; Chemotherapy, Mastectomy, Radiation, Reconstruction (and I am beginning to learn probably a fifth called Recovery but we will get to that later!). It is time to enter stage 3, Radiation and recently I have been getting 'Radiation Ready'.
One of the craziest things about this journey is the run, stop, run. I mean we race though a phase, a series of tests, a treatment, and then we hit "pause". Pauses are tough. There are the unseen and unknown parts that stir up all of the emotions.
As I have been in a pause phase since my second surgery, I have been working on weird and wonderful stuff, like getting back full range of motion in my shoulders, and building up my energy. For me, this has meant trying to strike a balance between doing enough, and not doing too much.
The unfortunate side effect of the current drug Letrozole is bone and muscle pain. It's a stiffness and soreness I can only equate to the day after you decided to go to the gym and hit it hard. The morning struggle after those squats to lower yourself onto the toilet, and a stumble as you wake up and nothing quite works in unison (I know its not just me that's had those days in the past). It weird, its unseen, it makes me feel really old, it makes me sad, it makes me frustrated.
Small things bug me. Like getting out of the car after a long drive because I'm seized up. That my fingers don't quite bend fully, and that currently, I can't wear my wedding rings. The oncologist assures me, no long term effects and it will stop once I stop taking the drug... in three years! But living with it is like a tiny little rain cloud hanging over me every day.
Like anything, we jump to wanting and needing a solution, and yes, there is one- physical activity. The more I do, the more I move, the better my joints feel and the more tired I get. Fatigue is real.
As I return to a more "normal" look, and more "normal" function, I am constantly reminded we aren't quite there YET. I actually feel quite guilty and worry constantly about the impression others have.
A lot of this is driven by the fact I am off work.
I worry that people question why. Why are you hanging out with Izzy and working in the Hospital Garden if you aren't at work? Why is it you can coach Emily and head to the CNE if you can't work? Why, if your driving Miah to Sick Kids and lunching with friends, aren't you at work? I know this is all in my head, but I think if I am asking the questions aren't others?
But in confidence with a dear work colleague, I shared, for the last 20 years I have professionally learned the skill of smiling outwardly, working a room, and doing my best to bring a welcoming energy and excitement without showing what's going on inside. As I write this, you are maybe getting the feeling that I am experiencing some internal conflict, and folks you don't need a Psych degree to be right on that one!
I suppose what I am trying to say is, what you see isn't always what is truly going on. Not in a fake way. Goodness, that's not my intent, but it is more of a tactic as I fight to feel a little normal, to be a bit more like me, to condition myself to be ready to do all the things I want to do, and love to do.
Life doesn't pause just because I have Cancer and over the last few weeks we have experienced some "didn't see that coming" moments. Although now is not the time, and this is not yet the place to share those in detail, death and despair are part of life. We have had some days where I simply default to "we can't make this shit up", or "man I should try selling the movie rights to this story"!
These cause FEELINGS... now it's no secret that I am British and occasionally that stiff upper lip has come in handy in the past, but right now I feel a little robotic. I am aware that I'm not reacting to big news in the way I once did. I feel like my body has developed a preservation technique and it's a bit of a blessing and a a little bit of a curse too. I have noticed elevated anger in times I wouldn't have in the past. I have noticed simply nodding at big news where previously tears would have most certainly flowed, and I have taken to activities to 'release' my emotions. Hot off the press! We now bake or garden our feelings. Muffins, cookies, mac and cheese, 20 loads of mulch and wheelbarrows full of weeds.
So it feels like the perfect time to share a little recipe. Why? Because I owe it to Lorna and Pam, and chemo brain made me forget it 100 times. So for anyone out there looking to bake their feelings may I recommend these cookies...
This post is titled Radiation Ready, and I feel like I took a little detour getting to the facts but here you go... its almost time.
For those who have been following the story you know I was hit with a little bit of a curve ball when, as a result of my pathology report, I was prescribed 35 radiation sessions, not 15. I have been told, time and time again, that radiation is a walk in the park compared to chemo, and I certainly hope that is the case. If you have read Pathology Results and a New Plan you know why I am very cautious setting expectations, especially as the oncologist has suggested that with 35 treatments I will experience fatigue and potentially skin burning. What I do know I will experience is incredible care which has been a common theme, and it was no different on Tuesday when I went for simulation.
When they first said simulation, I actually thought they said assimilation, and my mind went to a fun place somewhere between Star Trek and Avatar. I resisted a "beam me up Scottie". The radiation department is a well oiled machine of light hearted smiling folks sending you to pods A, B or C. Weird, as I compare it to a fast food restaurant versus fine dining upstairs in chemo. Don't panic! I've always had this warped sense of humour - this is a Katie thing, not a Cancer thing!
I am proud to say that Tuesday was full of firsts. It was the first time I was confident that I could get my hands above my head and leave them in a stretched spot for 15 minutes (my expected treatment time). It was the first time I got a tattoo, and look at me go- 5 of them!
Now, I should add they are the size of a sesame seed, but it's way more badass to leave that fact out.
I was "molded", which sounds daunting, but for me is as simple as resting in my position, hands above head, on a bean bag that gets sucked solid. Full of questions, I was thrilled to know these can be re-inflated and molded and are used for many patients over time. I am not an environmental warrior by any means, but there are times I could cry at the perfectly good things that have to be discarded because they are medical items dispensed to a patient.
Treatment mapping is a combination of protocol and experience, as two amazing technicians laid wire on my scars and taped ball bearings to the spots they would later tattoo. All of this done in expert time, with crafting skills any Pinterest pro would be proud of, laid on a CT machine. You see it is important that A) I fit in the machine with my mold, and B) all of my spots are in the right place. Part of me really wished I could see what they were doing... and then some things are best left to your imagination! We did sneak a couple of pictures along the way.
So now I'm a badass (cough cough), tattooed patient. What next? Let the games begin... My first radiation is Monday, and I am certainly a combination of nervous and excited. You see everything hinges on that day. It's a milestone of reference for the remaining phases, return to work and reconstruction. We certainly still have lots of things to cross off the Cancer treatment list, but for now, planning one final trip to the garden and a batch of cookies before it all begins.
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