So here we are, the half way mark, well, technically just over. For those of you joining us for the first time a little bit of history... I was diagnosed with Breast Cancer two days before Christmas Eve and now, I am a solid 9 months into the journey with notches on my belt representing 16 weeks of double dose intensive chemo, a bilateral (double) mastectomy with all of the lymph nodes removed on my right side, the beginning of reconstruction (skin expanders) and now, radiation.
Weird that when you write it as one slightly run on sentence, it feels like nothing. Radiation is the last major treatment milestone, and although we still have a long road ahead with a cocktail of drugs, and reconstruction, the longest part right now is the monotonous. daily 45 minute drive to Kitchener for radiation.
Radiation resting buddy...Hugo Willis...
So, let's talk about the radiation plan. Originally it was a cool 3 weeks to zap my right side as an ultra conservative, we got you covered, ending hurrah. This changed when my pathology showed that post-chemo and mastectomy, I had a remaining 3.5 cm of aggressive cancer, 12 cm of DCIS, breast cancer present in the skin, and some areas that did not present clear margins (the cancer was right to the edge of the tissue that had been removed). So, the new plan was 7 weeks of treatment (technically less two days), 5 weeks treating the whole area and 8 treatments focusing directly on the area with no clear margin.
It took a little processing to come to terms with the longer plan, but I knew and still know today why. If there is one thing that has been constant through my journey, it's a deep level of trust and respect for the whole team taking care of me. And speaking of that team, one whole day into treatment I received a call scheduling me to speak to my oncologist two days later.
As a kid I rarely got into trouble at school. Honestly, I could count the number of times on one hand and most of those were due to talking!!! Shocking, I am sure. But that call was akin to being called to the headmaster's (principal's) office with 2 sleeps to wait until I would know why. A friend joked it was that I was going to be asked to do a podcast, and in some way she wasn't wrong, but not in a good way. You see I was being summoned to chat. I use the word summoned but the very approachable, knowledgeable and to-the-point radiation oncologist had won over my heart with her direct and seemingly no nonsense approach to treatment many months back (even before chemotherapy), in the planning stages.
It was the perfect storm of a day with Joel taking Miah to emerg and me heading to the hospital alone. The Doctor sat me down and asked how I was doing? The side effects of radiation are fatigue and irritation/damage to the tissue treated, but it was too early for that.
Everything I had been feeling was the unwinding of emotions from the weekend. We had laid Joel's grandfather to rest (his sudden passing shaking us all) and celebrated the life of an incredible man and family friend who had battled cancer like it was a Leafs-Canadiens Stanley Cup Final. I was sad, tired, and I think without knowing it, a little nervous for treatment. Not exactly the best frame of mind to receive - news!
If I have said it once, I've said it twice, and I've said it a thousand times; expectations can be dangerous! We had already tweaked the plan, so what more could be added? A lot more (at least in my eyes). The doctor, again in the no-nonsense, full transparency mode that I love, shared with me that she had taken my case to medical conference. For those of you who aren't familiar, this means a gathering of respected colleagues and specialists to discuss cases... not an away trip with good snacks and a waterslide! My doctor had raised that given my pathology, and specifically the metastasis to the skin, that she thought I should have the new skin I had grown removed. Bye-bye boobs part two?! Yes, I had heard her correctly but the conference group had disagreed that this was too radical and that instead, a pivot in treatment would take place.
Now, as I mentioned, I was 3 treatments in by this point with NO reference to radiation treatment. I was "wearing" a 3D printed mold over my right side and in my ignorance, I thought this "bolus" was protecting my skin due to the longer course of treatment.
WRONG, the bolus was in fact shortening the focal point of the radiation so that I could have the full dose of radiation brought into my skin. What did this mean? Potential for increased reaction of the skin.
Now on a good day, I have a reduced capacity for information, and as I listened hard and tried to ask intelligent, well thought out questions, my mind was spinning. There was talk about skin not making it, and I wasn't totally sure what that meant. It's actually why I haven't written this until now because understanding the "worst case" is part of an emotional survival technique by now.
For Joel and I, skin not surviving was necrosis and emergency surgery after the mastectomy, but in the world of radiation it is something different. Basically the skin can become damaged and needs to regrow layers. The word "burn" is not one medically used in this situation, but it would be the best I can use as a non-medical person trying to follow along.
The next is fibrosis, and where this may present complications is in reconstruction. I won't be meeting with the plastic surgeon again until after the treatment is complete, so for now. just thinking happy thoughts, doing treatment and asking the universe for the best outcomes.
This all took more than a minute for me to digest. In the moment I reassured the doctor (or maybe more myself) that no matter what, I trusted her that the decision we made would ALWAYS be health #1, aesthetics a firm, not even close, #2. As I recanted this story to a very sensible and logical friend, he said, for the most part, this is nothing you didn't know, and he is correct.
But I think the difference is, you don't always receive the message loud and clear the first time. I had breast cancer. Lots of people have breast cancer. I'm not out to win the "worst breast cancer" competition. I had used words that spoke to the severity. The size of the tumour spoke to the severity. The inoperable spoke to the severity. The pathology and new treatment spoke to the severity, but for the first time, for some reason, the idea that a professional- so accomplished in her own right- would discuss with peers, it hit me.
So what now? Well, as I mentioned, this is a kick ass team. The long and the short is treatment is going on day by day, and when I come to the end, it's another "not really the end". The radiation oncologist usually discharges patients when treatment is complete but she is keeping me for another two years for observation, because at the end of the day, the only real test to see if the cancer has come back is physical examination. I can't have a mammogram, there is nothing to image!
Right now, I am doing ok with treatment. The fatigue is setting in, but I'm doing my best not to show it. The pain from treatment is building with a rawness to the skin. I have a radiation farmer's tan - it looks like I've been driving along with the window down and my boob out! A perfect rectangle... there is also a weird tan on my back. When asking the fab team that treats me daily why it would itch back there they simply responded, "oh yes, perfectly normal, it's where the radiation exits your body!"
Treatment is super simple- raw bit gets Polysporin cream, and others get Glaxalbase. I am not allowed in hot water (hot tub and bath tub are out), and where possible, I have to try and let air get to my underarm. Thank goodness that the radiation has zapped my hair under there as I'm not allowed to shave it!
So three weeks remaining, and no idea what this will all look like at the end. I am taking every day as it comes, and trying to make the most of the boring, repetitive, groundhog day feeling, drives to Kitchener. It's only a season. Izzy and I made Skor cookies for the team for Thanksgiving and are learning their treat weaknesses! I have also (unfortunately) found quiche that dreams are made of a block away at The Bauer Kitchen Café. Caramelized onions and mushrooms together... it really is stuff that dreams are made of! Thank goodness I also started a Living2BAwesome Challenge to hopefully melt away a few of the calories and a lot of the guilt!!! More to come on that one, but it's a medical fact that targeted exercise can help the side effects of the Letrozole (drug that inhibits Estrogen production in my body).
Reading this you are supporting me in a way I can't even begin to explain. So my wish for today- self care comes in lots of forms- so just take a minute to breathe, deeply, slowly and with intent. Enjoy your own company and let your mind be kind to you.
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