Jessica - Living with Metastatic Breast Cancer

I cannot believe it but after over a week of pushing, and many letters, my private insurance came through to cover the cost of my treatment. I am once again so grateful for insurance!
My health has been getting worse and worse so I'm so relieved that we can now get something going. I don't have details yet but I'll keep you posted.

I can't thank you enough for all your support.

This is not the kind of exceptional I want to be! Low oxygen and high heat beat. Taking Ben out of the car and getting him to the door of daycare. Argh!

Canadians! Help me spread the word about this ridiculous situation. Long shots sometimes land! Click through the slides for more info and cut and paste text you can use! There's an update in there too!

18 years ago, I started a job at Dawson College. I had spent the years prior finishing my BA and traveling in Eastern and Southern Africa. During that time I had been working at a bar on Crescent Street, but it was time for something a little more... daytime.
I had been working for about 2 weeks and that morning I could not find something to wear, it had been a while since I worked in an office and I had put on 10 pounds, I didn't have time to prepare lunch before I ran out the door.
When lunch break came I crossed the street to the mall, and after buying some clothes, lined up impatiently in the food court, silently cursing how slowly the attendant prepared our orders.
Just as I finished paying I noticed a commotion outside, I pushed my way out of the doors from the second floor food court directly across from the Dawson de Maisonneuve entrance. Someone had been shot on the front steps; must be a drug deal gone wrong, some guy said. Then another said that the shooter had entered the school and my blood chilled. I knew then that this was far more serious.
My cellphone died as the police cars started speeding up the street. The network remained jammed for the rest of the day.
I lived nearby and I watched as the helicopters circled above. I glued myself to the TV to watch my colleagues exit the building as the cops cleared each room, relieved they were alive and feeling guilty that i wasn't with them.
In the end, two people died. The shooter, whose name I will never forget but refuse to use, and Anastasia De Sousa, an 18 year old Dawson student. That no one else died is a testament to police's fast action and the amazing work of the Montreal General Hospital, unfortunately both of which had practice with mass.shootings in schools.
It was an intense return, staff and faculty arrived a day early for a debrief, bullet holes pock marking the walls, with mountains of abandoned personal items. When the students returned, the bullet holes were repaired and lost items organized. It almost seemed normal. It wasn't.
It's a day I, and many others, will never forget. I take today to remember with purpose.

I learned about the theory of love languages about 10 years ago and the idea resonated with me, even if I wasn't fully committed to the whole concept. Originally intended for couples, it was meant to show that people can express love in many ways but if your partner is expressing love in a way you're not accustomed to you may not feel very loved. The theory is everyone has a primary language even if we show them all sometimes.
Recently, I was thinking about Ben, and how I show him love and I realised that my love has no limits. I use all five equally and with compulsion - I can't help but buy a little something for him, or hold his hand while we fall asleep. I'd do anything for him and I will spend hours "rescuing his stuck finger" which gets "stuck" remarkably often. I tell him I love him probably about 25 times a day along with various other versions of the same sentiment.
I know my love is unconditional, and I also know it will grow and stretch to accommodate all of Ben's pointy parts. It's a different sort of love than I've felt before - my other love balloons would sometimes allow the pointy part to burst through, and I would patch it up or I would realise that it wasn't worth saving.
Love is an amazing thing, it doesn't pretend that one type is better than another. The love I've felt for my cats, for my origin family, my husband, my friends, and my son, has been profound in different ways. So too, has the expression of my love and the way others interact with me.
When you're sick, the love comes overwhelmingly in the form of acts of service and people are amazing, so eager to help, to "do things" for me. I love it and am incredibly grateful even though that's probably the hardest thing for me to accept. For me, quality time, has become so much more important but also words of affirmation fall much easier from my mouth. I tell people how much I love them when I can. The depth of grief I've felt has allowed for a deeper love and appreciation.

It's been a tough little while and it's been a little hard to look up but when I do I see love all around and I'm instantly restored. Look for the love, it's there, I promise.

So...on top of all this craziness we bought a house. I know the timing seems insane, and frankly it is. We closed on the conditions the day before the scan results came back. I'm still trying to trust my gut but the anxiety is whirling.
The house we live in now is just too small for our family, and as much as I love it, it's time to move on.
Our new house is smack in the suburbs, an idea that previously used to send shivers down my spine, but now I'm kind of banking on the idea of community. I know that one "nests" when they are getting ready to have a baby but I've wondered if there is some sort of biological imperative when death is close.
My current neighbourhood is transient, comprised largely of diplomats, ours and others, with a large number of private schools to match. This was exactly where I wanted to live when that was my life but now I'm craving more stability for Ben. Childhood best friends who live down the street, neighbours who might drop off a meal when Ben and Rafa need it, my neighbours here just aren't so inclined.
On top of that. I want a house that suits us a little better, enough bedrooms for visitors so my family can stay at our house instead of renting something. A garage so the car's not on the street and a mudroom so the dog and my favourite child aren't dragging everything through the house
So, it's crazy to be doing this now, but it feels so important to do. Fingers crossed it's the right decision and that my health holds up to get us there!

+IDC

So, scan results came in. There's been progression; the chemo has stopped working. Honestly, this is another disappointment, no one wants to lose a line of treatment and I'm blowing through them pretty darn quickly.
The fact is my cancer has never responded like typical breast cancer. The neoadjuvant chemo I did while pregnant, designed to shrink the tumors and make surgery easier, didn't really work with me. There was no evidence of any impact on my lymph nodes and my tumors were still large when removed, having shown very little shrinkage.
The cutting edge new medication, approved the same day I met with my oncologist and added to my hormonal treatment, didn't stop the spread. Then I falsely thought everything was in my bones, oligometastatic they called it, one or two sites of spread, no biggie the young Dr said who tucked behind the curtain but whose name I failed to get.
In January, death was imminent, the cancer, with another new name, lymphangitic carcinomatosis, was now in my lungs.
The chemo started again, Taxol every three weeks then one week off. We staved off my demise and I got one good scan, almost 6 months of "progression free survival" as they would say.
Today, we decided to try and get me registered in a clinical trial. For a long time, I have felt this is my biggest hope, it would involve treating my cancer based on some molecular markers instead of it's receptor status (HR+/HER2-).Receptor status isn't working so it's time to be bold.
I'm only mostly terrified but that's to be expected! Once I know more I'll share.

+IDC

I am officially losing my mind over here. My follow up scan to see if I actually have progression and need to change treatments was on Monday. I'm still waiting on results. Now it's a long weekend.
Whatever it is, it is, and I can't change it but boy would I like to know! I've been on steroids for five weeks now and even though I'm tapering off my body doesn't seem to be getting the message. My moon face is round and full and I feel pretty rough. I would really like to know where we are going from here!
On a more fulfilling note I just finished a planning meeting with a group of fascinating cancer researchers where I will play a role as a patient partner. I find the research landscape so fascinating and I love being able to contribute to science that can really make a difference. This project is about discovering some of the ways that cancer might hide only to metastasize years later and could be game changing. If not, science is pushed a little further with each study.
Trying to focus on the positive and now trying to forget the scan results!
Happy weekend everyone.

+IDC

It has been six years since I was lucky enough to visit a pretty magic place , Rapi Nui, known also as Easter Island. I stayed in a little cabin with a woman who lived there full time.
My Portuguese managed to work well enough with the Spanish to get by and I found a local guide that spoke English.
The island truly is incredible, and the Moai are really hard to comprehend. It's in the middle of the ocean and imagining how people made it there is pretty insane. The island itself has beautiful landscapes and amazing diving. Unfortunately, the weather didn't behave when I was there and the port closed. I did get one shore dive in, which was amazing but very rough.
Seeing the Moai was a dream of mine. There are so many amazing places in this world and I'm so lucky to have seen a few. I am grateful that I took advantage when I could. Money can't buy happiness, but it can buy experiences and those last way longer than stuff.

So I've literally written and accidentally deleted this post 4 times. It's aligned with how my life has been a little lately. Kind of terrible. Truth is living in these liminal spaces between scans and results, treatments and side effects and hope or horror, is really really hard. Sometimes you've just gotta drop your guard and feel it. I tend to withdraw during these periods. Lick my wounds, feel sorry for myself, and give a little love and attention to whatever grief I am feeling strongest at the moment.
I realized that I really lost a big part of myself when I stopped being able to make a plan, jump on a plane, and drag myself back at some ungodly hour because the fare was $50 cheaper. In Brasilia I'd travel at least monthly by flying out Friday evening and back Monday before work started.
My son is as big a reason as cancer for why I can't do this anymore and that's a joy, but I can find some middle ground. I need to remember a little more of my before. A big part of that me was a willingness to almost always say yes and a desire to seek out new and different experiences; to make the most of things, and to push myself to get out.
My goal is to reclaim this as much as I can. My old spontaneity definitely requires more energy than I can muster these days but I can and will choose to push just a little bit harder, move just a little but more, and while sounding counterintuitive, plan just a little bit more so I push myself into doing. Let's see how she goes!

+IDC

It's never the normal things that pop up and drive me crazy, but cancer and treatment, well mostly treatment, have all these unintended consequences and side effects and together they can really knock me out.
My rheumatologist (new specialist yay!) wanted to see about some modules in my fingers that are painful but come and go. So, in a peak of efficiency I had a left hand ultrasound today and next Monday I have a right hand one. I didn't have the energy to try and fight this one so I'll just go back next week.
Another incredibly annoying and surprising painful side effect I'm rocking right now is a tongue that is too big for my mouth. My tongue constantly pushes against my teeth causing indents and sores. My cheeks are bitten because my teeth have pushed out from the pressure of my tongue.
I've also been back on such a high dose of steroids that I'm really struggling with that right now. Moon face is back, my abdomen is so extended it popped my umbilical hernia repair. Again. It's hard to breathe and move right now, and I'm super irritable. The fatigue is insane. I'm already cutting down now though so hopefully this will clear up kind of quickly!
I'm grateful to be alive. Honestly. These treatments walk a very fine line between killing the cancer and not killing me.
It's just important to also acknowledge some of the neverending consequences. It's sometimes hard to remember why going back to work isn't the right choice or that I am just not capable of the same tasks the way I used to be. It's all a period of adjustment and grief.
Neverending so thanks for holding space for me!

+IDC

It's weird to become used to coming chemo. It's just not natural to pump yourself full with chemicals willing, but I know it's keeping me alive, so I show up and try and be as grateful as possible.
It isn't also easy or smooth. The night before sleep can be tough, and I'm always irritable on the way, which I know means this bothers me more than I can acknowledge at the moment. That's okay. It should. People can find the positive in the situation, and I have had insights and silver linings, but I'd never choose cancer or metastatic cancer.
The woman next to me is ringing the bell today, she is closer to my age than the others. I hope this is her last round of chemo, and I wonder who I might see next week.

Just holding myself tight and sending courage to those in treatment, any type, this beast isn't easy and we're all just dog the best ever can!

We've been in Toronto visiting family for the last couple of days and it's been wonderful and exhausting. Grandma is in town from BC so I have to share the love. We popped over to see siblings, mine and my mom's.

Ben started making the connection about family a couple of months ago. He lists their names and family configurations. Pure excitement in his eyes. Mommy, Daddy, Benji and Gus round out the chorus, our little imperfect family his safest place in the world.

My family has always felt close, even when the distance was far, but we've really cemented things since I came home. Babies do that. Sickness does that. Together? They couldn't resist me! It's been lovely to develop an adult relationship with them. To see us all orient towards different skill sets and make different choices. I mean, I'd really like them to be bullied by their older sister into moving to Ottawa but I've exhausted that plea so I guess I accept their choices.

They say your life flashes you by when you are dying and I had always assumed it was some rapid process as the cells extinguished. It may still be exactly that, but since I reconciled myself to my mortality and to the idea that it might not be that long coming, I have been transported back to episodes in my past often with a vividness that is surprising. I am learning that memories are located along a neural pathway and sometimes they get stuck behind something a little too hard to face so we lose them. I seem to be shaking them loose with family visits and personal therapy work. I do think I'm getting better at facing myself with compassion which heals the pain and allows a more fulsome relationship with my family. I can let go of old patterns. I can reestablish some vulnerability.

Ultimately, the beneficiaries of this will be this next generation of our family who will hopefully form close bonds. I wish that Ben could know the magic of siblings but he'll definitely know the love of an extended family and I couldn't have asked for a better one.

Let's talk about my b***s for a bit.... and scars... and surgeries! If you've known me for a while then you know in February, 2023 I had a preventative mastectomy and double reconstruction. To do this, we used a technique called DIEP Flap. That means they took the skin and excess fat from my lower belly to create what looks like breasts. There is no breast tissue left after a mastectomy so implants don't often work and while the surgery is very intense there are frequently fewer complications in the future.
I had my left mastectomy right after giving birth to Ben. It was because of the cancer left in that breast so we took everything, including the skin and the ni**le and I was left flat. Then I had radiation. This tightens everything up and sticks everything together, so your body on that side might never be quite the same. When we did my other side, we kept my skin and my ni**le. It looks much more natural.
I'll let you in on a little secret. When they take your skin from your belly, it does not match your chest. Or it didn't match mine. The pale white, fuzzy tummy skin, was crisscrossed with stretch marks. The result of my pregnancy. The fat they took was from that too. Hormone suppression a couple of weeks after giving birth is a cruel beast.
The jagged marks on my left breast were almost star shaped and they peaked out of the shirts I wore making me feel ugly when I caught the sight. The edge under my armpit puckering, making me cringe. I am glad I had the reconstruction, it made me feel more whole again, but I'm amazed at the confidence the tattoo gives me. I can't see the scars. At all.
The massive incision across my abdomen remains as do the drain holes, innocuous looking but hiding a long cording painful scar. I take pictures because I realise I haven't, my left side before the tattoo now only a memory without. The last 3 years have morphed my relationship with what's on my chest but I have no shame showing off the work of art on what my son now calls my belly with a giggle, as good a description as any and much more truthful!

From chemo to another scan! This one isn't my normal CT scan. It's a bone scan ordered by my radiation oncologist to get a sense of my bone lesions and to try and see if we can radiate some pain. My last CT scan indicated that my rib pain had been from a break that was healing. This will clear that up and give me a good idea of what's going on with my bone metastasis.
Bone scans are a bit of a pain. They involve an injection from nuclear medicine about 3 hours before the scan. My alarm didn't go off this morning so I was late for my 7:45 am injection but I managed to salvage the day.
I'm back now waiting for the actual scan and listening to the conversation in the waiting room between a Kurdish woman and French Canadians trying to ask about each other and understand the answers English. I want to jump in and translate, but I won't. I was worried at the onset that I might be witnessing an interaction that would go bad, but I needn't have worried. It was a lovely attempt at connection. The francophone thought his upstairs neighbour might have come from where she was from and she clearly struggled to explain the Kurdish ethnic group in English. He didn't know where Syria was and she couldn't situate it. They smiled and laughed and then returned to their respective company.
Hospital spaces are filled with a reflection of the population and sometimes an easygoing but difficult conversation can remind you of the goodness of people.

+IDC

It's so nice to see so many new faces! I was so honoured to be featured in , a nice reminder that there is still life with MBC. I tried to make a timeline post, but oh my goodness, the last 4 years of life have been insane. It's a little overwhelming but still to come. In the meantime, I continue to be a busy person, with a young son, a hyper dog, house projects and a husband who is new to Canada. Documenting all these things helps me process the whole experience so I came to Instagram.

I just had a conversation with my chemo nurse who also has a three year old. The little flash of envy comes over me, but truth is, I don't know any differently, I've always only been a mom with cancer. My son doesn't see me any differently than any other mother. He climbs on me, insists on being carried and grabs my hand to pull me to anything he finds interesting. He's a regular almost 3 year old in that regard. My momma brain just won't let me ignore him or set limitations on this love so my energy reserves definitely go that way. Honestly, I've always been a bit of a mind over matter person (see marathon post 😂) so it feels normal and nice.

My family tells me I need more rest, but I want to do what I can when I can. I don't know what's best or not, but my rhythm of "go all out and then crash" is working well enough. I'm taking whatever I can when I can!

All in all, I'm feeling good. Loving the tattoo and not seeing my scars. I'm happy with the decisions I made with my oncologist, even though it makes me nervous. The next CT scan is scheduled in August and we'll know more after that point but I'm happy to stick to the Taxol for now.

Happy Thursday all!

+IDC

My social standing was not stellar in elementary school and less than stable in high school. Then early adulthood and higher learning was definitely full of awkward moments. Despite that I managed to make the most outstanding gems as friends, back then and ever since. .
The nature of my life, and honestly of my personality, has meant I tend to make big changes and so I often "collect" friends from all of these stages in life. I absolutely love it when they seamlessly meld, a testament to their characters.
My tattoo was done in Montreal so it was a bit of a homecoming,, this time with my mother in tow. I felt the same the last time I was in town but this trip confirmed it. You can never go home again. The city has changed beyond my recognition, the select suburb where I grew up didn't have much canvas left, but the totality of the West Island? Unrecognizable.
What never changes? The ease of the conversation amongst old friends who despite taking different paths in life fall into the conversation as if not a day has passed. Something just hits different with friends who have known you in your youth. Mostly, they call you out even when you have cancer. You've weathered it all. So the sting was acute but entirely merited when someone said "you suck at messages Jessica" and the entire table agreed. Mea culpa. I've apologized once but managed to keep on keeping on.
Truth is, I often reply in my head so many times but fail to get that on paper. The other thing is I really struggle with is figuring out where the message is after I've read it... Whatsapp? Messenger? Insta? SMS? Email? FB comments? Which account?!?!? We definitely did not pick sides here in Canada. I swear everywhere else in the world other than us and the United States only exists on whatsapp. Alas, I won't change the world but it sure does make me laugh. I mean I get it, our data was insanely expensive, but it's not now... We can grow!
If someone mentions snap or anything more recent than that you are officially too cool for my capacity 🤣
All this to say my heart is full, the way it can be only when it's touched some kindred spirits, new and old.
And I promise to work on my messaging.

Less angry. Promise. I met my oncologist yesterday, just before coming to Montreal for my tattoo (to be revealed shortly!). He's not convinced we should switch treatments since the growth is minimal and I'm anxious to lose a line of treatment so I agreed.
The scan reflected mild progression and a fractured rib (I knew that pain was weird!), also weird though is that the cancer hasn't spread in both lungs, only in one, which is unusual so we're going to put me back on steroids and run the scan again, hoping that it gets better. If I feel worse as we go then we'll reasses.
I'm happy with the approach, even if it is scary, so we'll wait and see what happens! I'm feeling good and have a good feeling so that's what I'm going on this time.
Moon-face and general all over weight gain to follow but that heart will still be beating and the lungs will still be breathing so I'll take the puffiness even if I don't love it.

Thanks for all the concern and shared anger! I really appreciate all the support.

+IDC

I got angry again today. It wasn't about the underlying issue that sparked the match. It never is, is it? But the match burns the dam and the barage can't be held back. "I don't care about the neighbours hearing me" and in that moment it is true at least; I stomp, I slam, and I yell; I try and protect my anger. The ember burning inside. As I am experiencing this I am trying out a different response. I am reminding myself I am deserving of compassion.
My mother is here. She's the best; My husband is trying very hard; Ben is in his barnacle summer; and Gus is just somehow always underfoot. The phone is dinging and the sun is so hot. My temper matches.
It's not the little things. The scan is back. There's progression. The cancer is bigger. I had been having symptoms but I had hoped I'd be wrong. F**k cancer. F**k F**k F**k.
The mental load of keeping my house together and the actual state of my brain are not compatible, less so when the trauma raises it's ugly head. I was not pleasant to be around and so, as to be expected mom and Rafa, backed off and I retreated into a corner to try and swallow it all back in. Until I stopped, still angry, realizing that this was why I felt my anger was shameful. No one weathered the storm with me.
I said as much to my mom, when I found her, and she took the brave step of standing there while I ranted and raved. At first about the small stuff, things that have a source of blame, it quickly turned to the real heartbreak at hand. My son's not even three. F**k cancer. My husband is suffering. I'm suffering. I can't imagine my mom's burden. F**k cancer. The steam suputtered and my shoulders dropped. The tears came. What would have been one more layer of rage, was left a p**f of smoke, and our hug sealed the hole in my heart.
My goal is not to continue regular adult meltdowns but having this extra tool in my kit feels so good. Anger is part of this experience, at least for me, and I'd do way better embracing rather than fighting it. I felt the physical release of it leaving my body today and my body already has too much on her plate.

More on the scan to come. I need to process it. I'm still better than I was in January...

Still waiting... Forever waiting! So i got lost in Google Photo memories.
Four years ago, in the middle of the pandemic, Rafael and I finally fled our apartment for an open air adventure. We ended up in Cristalina, a city in Brazil with one of the highest concentrations of gemstones and apparently cotton fields. It was a great day. I cannot believe it was only four years ago and I am floored when I think that six months later I'd be pregnant with Ben and three months after that I'd find my cancer. You never know what the future holds!