Today is the first day of classes. I’ve been off for a year and I feel quite rusty. In addition to the changes in instructional design, the university has also changed its Learning Management System (the software we use to deliver our online courses). This adds to the transition.

It is also a time of transition for me from a health perspective. I’m not quite finished my treatments but I will be soon. I have 3 more herceptin treatments. I’m starting to think about what is next. I am reminded about all the mental stressors I had after my first diagnosis. The year after treatment was the hardest for me, because I had to really process my diagnosis, not just from a cognitive perspective but also from an emotional one. That is where I am now.

I’m feeling strong again. In the couple of weeks I’ve done a couple of 3 hour hikes, and I’ve gotten back into VR boxing. I feel strong and that feels good. But my mind is doing its wondering. I ask myself regularly, am I doing what I want to be doing? Am I making the most of the day?

The weather is also playing a role. We are changing seasons. Fall is a nice time here, but it is also a reminder that winter is coming. As summer ends, there is a greater urgency to get outside and enjoy the sun when we have it. That pulls against any other desires I have for my time. I feel guilty when I spend a sunny day inside. I feel like I’m missing an opportunity that is finite.

Perhaps it is the finite that I am feeling. I remember about a week before my mom died, I had the realization that ‘mom hugs’ were finite. When I got up, I went to her and asked for a hug. That was the last mom hug I had. I’m glad that I thought about it and asked for it. Now I’m thinking about my life as finite. There are a finite number of sunny days left, and I should make the most of them.

What does it mean to make the most of a sunny day? I can tell you what it doesn’t mean. It doesn’t mean spending the whole day in front of my computer working on my book or my podcast. Ensuring that my courses are running smoothly is my priority. After that, it is time to get out and enjoy the sunny end of summer days.

Lori was sunflowers.

Lilani was sunshine.

Will the sun shine again?

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I wrote this poem during a writing workshop. The prompt was “Sunshine feels like …”

Immediately sunshine reminded me of Lilani. A ray of light.

Then I thought of Lori, and how her favourite buff and compression sleeves are contain sunflowers.

I miss them both. They were lights in this world.

Cancer treatment is a gift that just keeps on giving … more like an anti-gift keeps on giving.

My latest issue is radiation fibrosis. The area of my collarbone and underarm that was radiated is now tight. I asked a friend who is a physiotherapist about it – she explained it as scar tissue like you get after a severe burn. So I imagine the interior tissue in the areas that were radiated are now scarred causing tightness. To help fix it, I need to do stretches multiple times a day. When I asked my cancer friends about it, I learned that it might never go away. I hate hearing that, and like the lymphedema in my right hand/arm, I’m not going to accept that it might not go away.

I’ve been back from California for a week. I’ve recovered from jet lag and my body is generally feeling good – or it was until I over did it a little. Monday I went for a 3km walk on the beach and then did 30 minutes of virtual boxing. Tuesday I went to an exercise class called ‘Feel da rhythm’ that is like an aerobics class but a lot more fun, but also a great work out. I followed that with a half hour of swimming. By Tuesday night I was exhausted.

The thing is, each one of those activities brings me joy. It isn’t just about the physical exercise, it is also about the joy in doing the thing.

Today is a bit of a rest day from physical stuff. Now that my office is setup (yay), I’m spending more time on my computer doing computer stuff – like writing and preparing to restart my podcast. I really like having my office space back. In some ways, it is the only room I feel isn’t in a sense of chaos.

Today is also chemo day. Infusion number 10 of 18. I’m still a little bummed that I have so many infusions left. However, it isn’t really that big of deal – more of an inconvenience than anything else. Tomorrow will likely also be more of a computer day – because the treatment makes my joints ache a little more than they usually do.

One of the things I’m doing for my mental health is taking a writing workshop. I find the process of writing to the various prompts very therapeutic, and it really helps me think through how I’m feeling on a given topic. Here is a snippet from something I wrote today. The bold is the prompt.

Write about the world restarting, being reborn completely anew…

Spring is a season of rebirth – I was thinking that on my walk this morning. Christmas is the story of birth, but Easter is the story of re-birth.

What is my story of re-birth – I’m in that story now. How do I re-imagine myself? Who am I now …

Cancer again has meant yet another chance at re-birth – of rediscovering who I am and who I want to be. I’m asking myself again what I want to do with the rest of my life.

My first cancer diagnosis taught me to look at each day and ask myself constantly, am I doing what I want to be doing? The answer has generally been yes.

My second diagnosis has reminded me to look at my life all over again. Am I doing what I want to be doing – mostly yes – but more, am I getting what I need from what I’m doing?

I am looking at happiness and joy – and what it means to me now. I am happy when I watch my dog chase after a ball at the beach. She is exuding pure joy at the simple pleasure of the game of fetch.

What can I do to exude that same sense of pure joy? What brings that to me? That is what I am exploring – that is the question that I have not yet found an answer to.

Back in February 2016, I wrote a blog post about forgiving my body. I just re-read it and it still resonates with me.

At a recent writing workshop, I reflected again on forgiving my body. Here is what I wrote:

I had forgiven my body for the cancer that grew it – for it trying to kill me. But now I don’t know what to think. Do I need to learn to forgive my body again for growing a new round of breast cancer?

Forgiveness is a form of healing, of letting go of the pain. I think I can do that. I can forgive my body for growing a mutated version cancer that I had over eight years ago. I can thank my body for remaining nimble and not limiting my range of motion, even after radiation, for ensuring that even when I was low on energy, I had enough to go for a short walk with my puppy dog. I can forgive it this time!

But if it happens again, will I still be able to forgive my body? Will my body deserve being forgiven if it keeps bringing cancer back?

My therapist asked me, how much time I spend on “accomplishments” rather than joy. I have been so focused on “doing things” that made me feel like I had accomplished something, that I wasn’t spending any time focusing on things that bring me joy. She encouraged me to try setting up my days so that I have a balance of accomplishments and joy.

What brings me joy? A lot of things, but the problem is that I’m not getting joy from them – or not to the same extent. My happiness emotions are definitely muted, where my sadness emotions are on overdrive.

Things that bring me joy include:

• a bike ride on a warm spring/summer/fall day
• paddle boarding and then swimming on a freshwater lake
• a hike in through interesting natural areas (forests, coastlines)
• a walk on the beach with Cali, watching her run after the ball
• baking for others
• entertaining (e.g., having people over for supper)

Yesterday I had a pretty major sadness meltdown. I started the day with preparing the baseboards in my hubby’s office so that they could be painted. This turned into a much bigger task than I thought as many of the finishing nails were not in all the way, so I had to do a lot of pounding in of nails before I could spackle. It took everything out of me. My body was sore, especially my knees and the tops of my feet from kneeling, but also my back. I was exhausted from the effort, dripping with sweat. When I finished, I took a shower and laid down to watch some TV. Physical effort and exhaustion from such a minor task made me feel really sad. I felt like my body wasn’t letting me do the things I want to do. I was generally feeling sorry for myself, and I was doing a lot of crying. I felt like curling up into a ball and sobbing, which is pretty much what I did, for at least six hours if not longer.

Today I thought more about joy. I had been wanting to get out for a bike ride for a while, but the weather hasn’t quite been ready for it. Having previously reduced the inertia required by ensuring my tires were pumped up, I went out for a ride. I’m not sure how far I rode as my watch died after a couple of minutes of riding. Probably around 20km, which seems impressive until you find out that I was riding my electric bike. Either way, I was out for an hour and enjoyed being on a bike again. I’m looking forward to a time when I’m feeling strong enough to ride my recumbent again. The tires are pumped up and ready for whenever I want to take it for a spin. I just need to feel strong enough for it. It requires quite different muscles to get started. It would be much better on my lymphademia filled arms, but without the electric assist, I will need to do all the work myself!

I also spent some time at the old house digging up plants to bring to the new place. I’ve particularly been enjoying digging up various flower bulbs (mostly tulips and daffodils) and transplanting them to here. Even if they die off this year, there is hope that next spring my garden will be filled with flowers. I am hoping that one day I will look out my windows and see flowers on both sides of the condo.

And then, while making dinner I also made some cookies – almond flour, peanut butter, carrot, chocolate chip cookies. It is a new recipe that I hope turns out. I’d like to give some of them away to show things for some of the work one of my neighbours did to finish up hubby’s office. It is now fully painted and ready for him to start moving his stuff out of my office and into his office. That will make me feel better, as then I will have my own space so I can setup to do my podcast again. I’m thinking of my podcast as a way to get my mind back into instructional design and into what’s happening with AI in that space, so that I’m read to go back to work in the fall.

Today I tried to work on my joy list. My accomplish list is much lower today because I chose to focus on the joy list. I do feel quite a bit better today than I did yesterday.

Tomorrow and Tuesday may need to be more ‘balanced’ days with some accomplishments as well as some joy. I’m hoping most of my time in California (a week) is spent on joy. I’m looking forward to seeing my friends again. We definitely have some joy planned!

I have been diagnosed with breast cancer twice.

In 2014, we had just moved to California. We had no support network. It was just my husband and myself.

This time, we live in a cohousing community and have support from my neighbours.

In 2014, we lived in the South Bay Area near San Jose.

This time, we live in a small town in Nova Scotia Canada.

In 2014, my diagnosis was quick. Within a week of reporting the lump to my doctor I knew what kind of cancer I had (bilateral hormone positive, HER2 negative in both breasts).

This time, it took months to finally get my diagnosis, a lower level of hormone positive and HER2 positive.

In 2014, I knew nothing about breast cancer and had to do a lot of learning.

This time, I knew what things meant and was able to anticipate the recommended treatment options. I knew what to expect.

In 2014, I had to choose where to get treatment.

This time, I already had an oncologist and there was only one surgeon in the small town where I live.

In 2014, I did chemo first.

This time, I had surgery to remove the cancer before I knew exactly what kind of cancer it was.

In 2014, I had access to several different support groups.

This time, there isn’t a support group. I had to reach out to find an online healing circle which isn’t quite the same as having a local support group.

In 2014, I had to bring my own food to chemo.

This time, they fed me during chemo.

In 2014, I went to a large chemo centre where the warm blankets are hospital blankets.

This time, I’m in a small chemo centre where the warm blankets are fleece or knitted blankets in a variety of different colours.

In 2014, I did not need radiation as my nodes were negative and I had a double mastectomy.

This time, the cancer was in my lymph nodes, so radiation was required.

In 2014, I did a what felt like a lot of chemo (4 rounds of AC, 12 rounds of T but ended early at 9 rounds).

This time, chemo was shorter (4 rounds of TC), but I am also doing Herceptin every three weeks for a year.

In 2014, I was obsessed with what was happening with my hair – both in the process of losing it and the process of it growing back.

This time, I didn’t really care. I had some fun with my neighbours colouring and styling it before it fell out.

In 2014, I lost ALL my hair.

This time, I didn’t get to a point where I lost all of my hair.

In 2014, my husband came with me to all my appointments.

This time, the chemo centre is so small there is no place for him to be, so I went alone.

In 2014, it was a half hour drive to the chemo centre.

This time, it is a 5 minute drive to the chemo centre.

Both times, I felt like I was getting the care I needed. I’m glad my initial treatment was in California, and I’m glad that this treatment has been in Canada. I feel like in both cases I was in the right place.

I wasn’t sure what to write about anxiety. It is really difficult to explain.

For me, it becomes a compulsion to be doing something, which is why I’ve had a hard time taking a rest. I feel like I need to be doing something all the time, otherwise I’ll spiral down. If I can keep my mind occupied, then it doesn’t have a chance to spiral.

It means that I’m overly sensitive and often on the verge of tears. It can be something trivial that sets me off.

The other day at the grocery store I ran into someone from boxing. She asked how I was doing. Physically I’m doing great, so I often say I’m doing well. I told her that I missed boxing but it is unlikely I’ll be back anytime soon because of my lymphedema. That brought me to tears. I held them off long enough to get checked out, but was crying when I got into the car. It is hard to explain, but I miss the camaraderie at the club.

Physically, I’m feeling strong again. I walked 4 km on Crescent Beach on Saturday. I don’t remember the last time I could walk the full length of the beach – it was before treatment. Unfortunately, after that I crashed and spent the evening sleeping. Maybe I was pushing it.

I went swimming today for the first time since chemo. It was nice to get back in the pool. I actually swam more than 500m, which is more than I expected for my first time out in months. Yesterday, I started the day with a boxing routine on my Quest (virtual reality boxing). I felt great doing it, but my normal exercise rush wasn’t there – or it was muted – as was my rush from being in the pool. Exercise usually makes me feel really good, especially when it is strenuous – but I’m not getting that same feeling. The feeling is muted.

I remember the struggle and the breakthroughs from the last time I went through this. I’m not having the same anxiety – in that it doesn’t feel the same. I’m numb to the fear, which is what I had the last time. I’m not numb to the loss. Loss weighs heavily. Boxing is one of the losses. The rest of me feels like things should be normal. I don’t have the same mental losses – the loss of innocence, the loss of physical body parts. There isn’t as much loss this time – I didn’t even lose all my hair!

I am super sensitive to not being (or the sense of not being) appreciated for all the work that I’ve done. It is so demotivating when someone wants to just throw it away without acknowledgement of the past work. I’m also afraid that my work won’t be as rewarding next semester as it has been in the past.

With the end of active treatment comes the anxiety and depression that I have been suppressing throughout. The fatigue from radiation has me worried about depression. The nightmares make me concerned about PTSD, and the crying, well, that is the only way I can cope right now.

I was reminded of a concept I learned at Commonweal about ‘fantasy future’. That is, we all have a future that we fantasize about, and in reality, that future never turns out exactly how we imagined it. But we cling to some form of fantasy future – and then cancer comes, and it shatters that fantasy. You need to mourn the loss of the fantasy future. The fantasy itself is what is shattered – that is what needs mourning.

Today, I am sad. I hope that the radiation fatigue is what is causing these swells of emotion.

I’m also thinking a lot about the future. One future is that I don’t get cancer again, but there is another that weighs heavily on my shoulders, which is a future where the cancer does come back. It weighs heavily on me that my parents died young. With each year that passes, I get closer to the age my mother was when she died. It doesn’t give me much hope for living a long life.

I need to remind myself that for this week, and maybe next, I’m still feeling the side effects of radiation. Being tired and fatigued causes me to spiral downward. Once the radiation fatigue passes, I hope that I will be doing better. I will still be mourning my fantasy future, but I won’t be doing it from a place of tiredness, which I know makes my depressive symptoms much worse.