The routine of radiation involves me getting up and walking to the hospital for my appointment. This week, my appointments have been in the morning. It is a 10-15 minute walk which has reminded me how much I enjoy walking in the morning – even when it is snowy – but especially when the sun it out. I am reminded that I used to walk Cali every morning (around the pond or around the block). Since chemo I have not been doing that walk. Others have taken Cali for walks – so she isn’t missing out – but I’m missing out. During radiation, I’ve decided to get out and walk as much as I can before the fatigue side effect kicks in. So far I’ve been pretty lucky, with minimal side effects. When we are in Halifax I’m walking at least 4km each day.

Today’s treatment got cancelled due to a broken machine. This means we will add a day to next week’s treatment. Fortunately, we had room in our schedule for it. It means this week and next week will both be four treatment weeks. I think the lower frequency is helping reduce the side effects.

Of course my day off treatment isn’t a day of appointments. I had a root canal today – well, the finishing of a root canal that was started a few weeks ago in Bridgewater. Unfortunately, this turned out not to be finished – the doctor put some medicine in that needs to be there for two weeks before he closes the root canal. He mention there was some necrotic tissue that needed to be treated. This means I’ll have to come back to Halifax for a dentist appointment the week after I finish radiation!

On an emotional front, my thoughts lately have turned a little morbid. It started with thinking about this being my last good summer – that has changed – I’m now thinking with a five year time horizon. On the drive up, I asked Scott what he would want to be doing if he only had five years left to live. He changed that a little and asked what he would want to do if I had only five years left to live. The thing is, we have already started planning it. We hope to be camping a lot this summer, and we are living where we want to be living, in a community that we love, close to amazing nature. In many ways, Treehouse Village will be part of our legacy.

When I think about what I would be doing differently, the biggest thing is spending less time dealing with Treehouse renovations. I feel like I need to be selfish now and spend my time walking on beaches or hiking with my puppy – and hopefully my hubby. He is still so intertwined in finishing Treehouse – such that I occasionally get sucked back in – but then I use cancer as my reason for pulling myself back out and doing what I want to be doing rather than what I feel like I should be doing.

Fortunately, what I want to do is often physically better for me. I feel better when I can spend three hours a day exercising.

I want to do some renovation work – especially at our old house. I want to pull up the carpets – I’d love to do it, but I know that if I do I’ll just suffer from back pain. My body doesn’t like the work. It much prefers that I walk or hike, or sit at my computer and type. So, I will need to pull back from renovation work in order to keep my body as physically healthy as I can.

Unfortunately another thing that my body dislikes is standing and therefore cooking. I realized last week that my back was feeling much better – and I attributed that to walking a lot more – but realized on the weekend that part of it is that I’m not cooking. I’m not standing in the kitchen, and standing aggravates my back. I need to find better ways to cook – because I love cooking and we still need to eat – that doesn’t require me to stand so much. I also need to be more aware of the pain coming on and doing something about it before it gets bad. I’m not particularly good at that part.

I am looking forward to camping this summer. Interestingly, I mentioned that to one of the radiation techs and she commented that she goes to the south shore in the summer. That is one of our challenges – it is no nice at home we don’t want to leave it – but we also want to explore more of this beautiful province. This summer, I’m hoping to see more of Cape Breton – and I’m looking forward to visiting folk festivals … then there is our broader travel. I’m going to California in late April, and we are going to Iceland in early June.

I am using the ‘regret test’ when I plan things. That is, I ask myself if I will regret not doing it. The trip to California definitely fits the regret test. I so happens that my planned timing aligns with Lilani’s memorial – which means that I will be able to attend, and I will likely be able to see and hug so many of my friends. It was hard leaving during Covid and not being able to say goodbye. I’m looking forward to proper goodbyes on the trip.

And so, I’m feeling like I will live for five years, but I am only planning until the end of the summer. I do plan to go back to work in September. I’m looking forward to some the changes and challenges in my courses as a result of AI.

It occurred to me when I was typing that AI changes meaning for me. AI in the breast cancer world is aromatase inhibitor – one of the stronger class of estrogen blocking therapies (and one that I will start in the summer). In the context of work, AI is Artificial Intelligence. Generative AI specifically is changing how we go about creating course materials.

OK that is enough thoughts for today. I’ll try to write a little more frequently in the next couple of weeks.

Radiation started this week. So far it has only been two treatments. They go pretty fast. Immediately afterwards I find myself wondering if I’m feeling anything. Can I tell that the invisible beam is attacking part of my body?

We did have a bit of a misunderstanding, for which the radiation oncologist felt bad. I might have just been misremembering. Radiation is on the lymph node chain the goes from my under arm to my neck – that part I knew – but it also covers around the surgical area. She showed us the CT and where the surgical clips were, and the radiation target areas which included the area between the surgical clips. It makes sense, I just somehow didn’t realize it.

Last week I also lost a friend – Lilani – who loved to send me postcards from where ever she was travelling. She loved to send and receive letter mail. She was diagnosed metastatic just at the beginning of covid. She was such a light in this world, I am so sad that she is gone.

I met Lilani at a young survivors support group when I was newly diagnosed. I had just had my head shaved, so had not lost my hair yet. She taught me how to tie a headscarf and commented that wearing dangly earrings was the key to making the headscarf look good. I remember that as if it were yesterday. Myself, Lilani, and Katie were all from south bay, so we carpooled together for that evening support group. Later, after initial treatment, I convinced her to join BAYS – which at the time was hosted at my house. BAYS – Bay Area Young Survivors – is a peer led support group and became my close friend circle. I miss being near all my BAYS friends, and I do hope to get down to California to visit them in the Spring. I need their hugs.

I’m mad at cancer. One of the things I was looking forward to in the fall was a trip to California to see my friends – a trip that was cancelled when my recurrence was found. One of the friends I was looking forward to hugging was Lilani. Cancer took that away from me.

On the drive to Halifax for my first radiation treatment, it occurred to me, the lymph nodes that I’m getting radiated are the same ones where Lilani found her metastatic lump. We had been at a sleep over and she noticed something under her collarbone. And now, I’m getting radiation under my collarbone. It is so triggering.

Radiation also seems to have me crying more often. I don’t know if that is a side effect of the radiation or just a reaction to everything that is happening.

On Thursday we made our way into Halifax for my radiation marking appointment. When I arrived at check in, there was a distinct lack of information. The person at reception showed me where to change and told me where to wait after I was finished changing – however, she didn’t tell me how I needed to change. I decided that I only needed to take my top off, as they were not looking at my lower body.

They brought me into a room with a CT machine, lined me up, put some markings with pen on my body – specifically, under each armpit and one on top and the another on the bottom of my sternum. They put me in the CT, took a few pictures, then put small tattoos in the four spots. Three of the tattoos are generally covered by clothing, but if I were to wear a low cut shirt, you would see the top sternum one. Fortunately, it looks like a dark freckle.

I can see why some breast cancer patients really dislike the radiation tattoos. Now, everytime I look in the mirror I see them. Everytime I shower, I see them. They are a constant reminder of radiation. That being said, I have a lot of scars that are constant reminders and I get used to them. I’m pretty sure I’ll get use to the tattoos as well.

The next step is to wait for a phone call. The CT information goes to the radiation oncologist and she plans out the radiation. When there is availability of the radiation machines, they schedule it. It can start on any day of the week – so although it is 15-sessions, it might not start on a Monday. Typically, patients get about 2-days notice. When the phone call comes, they also schedule accommodations – either Hope Lodge or the Lord Elgin Hotel – depending on what is available. At this point, either works for us.

We also decided to spend Friday Feb 9 in Halifax so we can see JP Cormier and the Nova Scotia Symphony do a Tribute to Gordon Lightfoot. It is a late birthday present.

I’m also still waiting for the head CT. I haven’t received a call about it yet – so I’ll call the doctor’s office tomorrow and mention it. I will also ask them to mention that I have a port, so I need an appointment during the day when there is someone available to access it (if contrast is needed).

Now go on with our lives until we get the phone call. I’ve spending my time doing various sewing projects, exercising, and doing some painting in our new home.