The Return Tour

WARNING:

THIS BLOG MAY CONTAIN GRAPHIC IMAGES AND STRONG LANGUAGE
Please always consult your doctor for medical advice

Sept 15 2022 – Again

It came back.

What… the absolute fuck. Its scarcely been 4 years.. 

The words of my therapist were true.. as time passes.. the fears of recurrence will pass. And pass they did. So much so I had finally felt like it was time to start a family.. my biological clock, my “no I don’t want kids” glockenspiel had finally sprung to life.

We had moved into a nice house, far away from the stressful reaches of condo self-management or shall I say self-presidenting plus management. The perfect nest was ready and with it my decision to go off Tamoxifen for a short amount of time to try to get pregnant. 

3 months to detox.. then 6 months to try, because they didn’t want me off the meds for more than 1 year including pregnancy.. 

OK before you go judging me for going off Tamoxifen, my oncologist already cleared 
it, and I had been on the meds for at least 3.5 years before the 4th year when this stuff came back. 

And after talking to my new oncologist, 
its pretty much determined that Tamoxifen wasn't really working on me, it was too 
weak on its own and probably needed 
aromatase inhibitors too. 
BUT I digress......

I figured if it happened the it would have been something that the Universe would have gifted us. It would have been meant to be. But it seems like life had something completely different in mind for me.

Oh but wait..

What happened in those 4 years after the first cancer diagnosis you ask? Did you find that dream job? Did you become a nun?

(read the origin story here)

In the year following the end of cancer treatment I went into overdrive looking for a different job…. I applied endlessly to one posting after another.. I took multiple online courses, did countless hours of research. I really wanted to work for the United Nations or something to that effect. But it didn’t really work out, and all the while in the back of my head was a nagging limitation: I can’t apply for anything that has no disability insurance cause I’d be bankrupt if my cancer ever came back.

The closest I got was third or second choice candidate in a Data Visualization position for the IEA the International Energy Agency based in Paris… I was so goddamn close.. If I had sold my design sensibilities a little more.. I could have had a very different story to tell you right now.

In my failures I turned my eye back to local initiatives.. I joined a local carbon clean tech accelerator program. I tried a new Team Lead role, I joined a local choir and began performing at fairly well known venues like the Jack Singer. I became a woman philanthropist with the Canadian Red Cross – the Tiffany Circle. I volunteered for the Climate Hub, logistics for the Red Cross, I made even more new friends. Oh! And we got a Corgi puppy, and named him Samwise. The most loyal friend, my literal fur baby.

Annnnnnnnnd then the whole world came crawling to a halt. PANDEMIC hit. Some strange, super contagious flu virus that had a really high death rate.. Planes stopped flying, factories stopped working, the cars stopped, the people stopped.. we all held our breath because we wanted, and had to simply, survive.

People hunkered down in their homes and hoarded of all things… toilet paper. And I hunkered down with them. The only thing keeping us both sane was daily walks outside with our beloved Samwise. As time went on I got used to a “new” normal, one that didn’t involve galavanting around the world chasing dreams. With time.. I found that that long time passion of mine had started to shockingly, wane.

So I continued living my days until…

Aug 19 2022 – Going back in time

It’s been hella long since I’ve had a proper scan. The whole world came to a standstill with Covid 19, and our healthcare system has been strained beyond recognition. Even family doctors were refusing to see patients. But when that too came to an end I decided it was time for a routine checkup. Bloodwork etc the works. I scheduled an appointment with trusty old Dr W.

“Do you feel anything here?” Asked Dr W? Hmmm? I said nope.. nothing at all. “It feels a bit thicker here”

Nope, I doubled down on it.. I do periodic self exams, but all I knew to really look or feel for were lumps.. not.. thick tissue? I had always written that off to old scar tissue, or maybe side effects of radiation.

Okay well, we’ll send you off for ultrasound, mammogram, x-ray, and blood test. All pretty routine. Nothing sounded alarming from my visit with Dr W. But when I read the notes on the requisition, it spelled out something completely different.

Sep 7 2022 – Mayfair, and I know those looks

I’m back at Mayfair.. its ultrasound mammogram day, and I’m here alone again. But this time a bit more confident. But I am nervous because there is something ominous in Dr W’s notes.

”Thickening tissue…. Previous history…”

I get an ultrasound… its taking a familiar amount of time… too long.. half frowns… the technician asks if I want a pelvic ultrasound as well… I guess I’m here already..

While you have that done.. the radiologist will review the images… and I’m sitting in that familiar chair. Waiting a bit too long again.. each passing minute foreshadowing something that was not yet tangible.

The radiologist emerges. This fit looking tiny Asian doctor, around her neck is a cross. The look on her face I also notice. “It doesn’t look like a cyst… when is your next availability for biopsy?” …..

then finally the clincher “I know this isn’t the news you wanted to hear today…” She might as well have just told me to jump into the proverbial coffin right then and there.

I go home.. and I’m once again… crying in that same Yaris. Getting home I share the news with Marc… I’m already convinced.. I already know it is bad news because I was in the room, and I had read it.

Marc was trying to be positive.. “its probably just a lump of fat you know? Don’t worry until the biopsy is done.. “ Doesn’t he sound like Dr W?

Sept 8 2022 – Biopsy Day

I just hate the waiting… I had initially booked a biopsy appointment 4 days after getting that fateful ultrasound.. but the stakes are so much higher now..

I call in to rebook “When’s your next available slot? Tomorrow? OK”
Recurrent cancer has so much many more implications.. If I had it again where, how far has it spread? What did I waste my last 4 years on? How much time do I have left now?

I decided that I didn’t want to wait after all, and called them back for a biopsy today if they could swing it and they did.

I remember my first biopsy to be not so bad.. not that painful… but this time the lumps or lymph nodes in question were in a completely different place… further up and away from my breast towards my armpit.. 

When they told me where it was… I was shocked… super alarmed… Because the first place breast cancer spreads to outside your breast is your lymphatic system. From there.. those little fuckers can hitch-hike their way to distant organs.. mostly lungs, bone, or your brain.

The same fit asian doctor is welding the familiar needle.. alongside another technician who oddly reminded me of an IT tech who I had worked with before..
Same sort of build and nerdy over-enthusiasm at the job at hand.. except that the job at hand was me.

They extract-stab me 3 times.. I feel them despite the freezing, this time seems much more painful than before… and I will feel the bruises for the remainder of the week while I await my sentence.

Sept 21 2022 – Mammogram and Ultrasounds

It was the day of the mammogram today, to be honest it was almost an exercise in nothing..

we had put it off weeks before because I was still trying to get pregnant and they didn’t want to risk any potential fetus. But as it turned out I wasn’t so I was cleared to get the mammogram done.

I’m a pro at this point with the machine… familiar with the pinching… the uncomfortable coldness of the plastic slabs.

If you are a female, please take away one thing even if you don’t make it through the whole blog.

• It’s never too early to Self examine your breasts.. get real familiar with them. Look for any odd lumps painful or not, thickening tissue, discharge. Or even if you just have a weird feeling something is off. Your sense of intuition can be a life saver.

• Get screened, ultrasound or mammograms, even if you think you’re young. They’ve recently lowered the age of mammograms to age 40, which means more and more young women are falling victim to the disease.  

• Catch it early. Don’t be afraid of the process, because if it’s early enough, you could save your breast, your fertility, further systemic treatment all the words that I will be writing below. You don’t want to mess with cancer just cause you can’t wrap your brain around the fact that you have it… is it cliche … but better to be safe than oh so sorry.

Sept 25 2022 – The in-between days and Frasier Crane

Life didn’t stop through all these developments… There was still an important go live at work to accomplish, my brother was visiting from out of town, then a friend… so then I became tour guide and host. Some days I found I could confide and other days not.. because nothing was confirmed yet.

Cancer really is a journey, it usually take weeks to a month to find out what the next step or turn will be. And you never really know if that turn is good or bad.

What’s worst is all the mind games that go on during that time.. while you wait. You wonder, ponder life decisions, do the what ifs.. the denials.. I always found it the worst when I had to tell someone.. and I probably shared the news too fast to too many people. Each time you tell the same story.. it hits you that its your reality.. when maybe you’ve just work so hard to forget it. Then you cry again.. remembering.

To help me get my mind off I found comfort in watching old Frasier series. I had loved watching the show in my teens when everyone else was watching friends.

Not only was the writing hilariously brilliant, there were so many candid and vulnerable moments with various characters and always sound advice. But perhaps the biggest thing you notice is the weaknesses of the brothers themselves. Having many educated years in Ivy League psychiatry did not preclude them from having to deal with their own personal demons.

A few episodes always put my mood back a wholesome and balanced place.

Sept 30 2022 – The Reveal

Dr. W’s office calls me for an appointment for my results.

They want me in right away…. which probably equates to shitty news. This time, I ask Marc to come with me, I will do most things by myself if I can, but this time I have a feeling I will need backup. Or at least not have the memory of going through it alone again. Lone Yaris crying and all…

Cancer the second time doesn’t have the same shock factor as the first time. This time Dr W was much more forthcoming in the news. “They found the same type of cells as before”

Even though its “old news” for everyone else.. your family, your physicians, your technician, your colleagues… people can easily become tapped out of sympathy. Or the simple fact that cancer just is a long term problem that you have to face days.. months years on end.. it simply loses novelty.

This disease, cancer, progresses with no care to your career, family, vacation plans. It just moves on pulling you along for the ride.

We are both welling up in tears.. because both of us truly know what each recurrent diagnosis means.. and it feels like a punch in the face, very different and harder than the last time.

October 5 2022 – The Surgeon

I meet my surgeon Austen again… he was so good and caring last time, and he orders a gamut of tests.. CT, bone, breast MRI full body. Exactly what I would have asked for.. where else could it have been? Or gone.. or snuck off to.

I had by this time planned a small escape from everything so the bone scan was going to happen literally tomorrow. With the CT and breast MRI soon after I return.

But to be honest all I could think of was getting away, to somehow run the hell away from all that was unraveling, to run away from Cancer.

OCT 11-21 2022 – The Reprieve

The first time, you caught me by surprise. The first time, I was reeling in so much shock that it froze me. But the second time. I was ready to run. Seeing my future painted before me, one full of tests.. suffering, unknowns. I knew I needed to get away.

Vacation is always great but you need to plan it out first and that always takes work. I was in dire need of one, not just one to the mountains where I’ve been so many times.. one far away a complete change of scenery.

I had a small trip planned to Vegas in October, but I knew I needed something else for myself. With very little in expectation I booked a vacation to a small island in the Açores, Sao Miguel. No one happened to really be available to join me.. and maybe that was for the best.. Maybe I needed sometime to reflect, decompress and be alone with my thoughts. I needed to make some good memories. some mental places that I could recall and go to during future times of duress.

And it turned out to be such. The most perfect vacation anyone could have asked for. I stood in front of ageless carving and art and cried, hydrangeas lined almost every road. I gasped at every beautiful scene. I met great people and had deep conversations. I was busy yet had time for myself as well.

10 15 2022

I had the most beautiful walk this morning after the breakfast buffet. I don’t know if any other country has made me gasp out loud so often!

I’m glad I took the alternate path today towards the west. It became slightly scary at first, a lone woman going down a quiet dirt road, not quite knowing where it leads…

Well I lied, it goes to a look out point on google maps by this way it sounds more romantic

A ‘quick’ thirteen minute walk but gasps at every turn, the flora to admire, and when it breaks, a breathtaking view of the rocky cliff lined ocean again. I fashioned a handy walking stick out of dried up bamboo-type looking plant and it became my sturdy companion.

No one at my side. So who do I tell? Perhaps just you my mysterious reader. A lifetime of scribbles jotted down in an eclectic and incomplete set of notebooks.

But back to the walk. At one point a darkly-clad man came into view behind me. My thoughts instantly get dark, my pace quickens while I run horrible scenarios through my head. There wasn’t even anywhere to hide. But an open patch in the heavy vegetation opened up and the view made me gasp, life be damned, this view was worth the peril. I stepped to the side to take a video and the lone man passed me by uneventfully.
I had a view, and my silly fears passed with no ill intent.

I continued on pleased as punch and soon saw the tiny sign pointing to Buracao de Sao Pedro, 100 m, exclamation point. The grandeur of the rocky coastline permeated into a million versions of views, each one pleading for your time. I reached the endpoint, a geologic formation that circled down, down into a craggy funnel. And at the bottom you could see and hear the ocean surf beating against the rocks.

Many birds have made it their home, I hoped they were exotic species.. but as I strained my untrained eyes they looked alot like our common house.. or err sea pigeon.

It would be so easy to die here.. step off the sheer ledge into that funnel startling all the birds at once. To end it here in this perfect place and stop the suffering, the long road that may come my way. That is coming my way.

But my trusty stick warned me where the edge was, and I naturally took a step back. My biology would fight to live, if I jumped, I would fight to breathe in the cold salty ocean. My lungs and heart unaware of the slow peril that grows inside me.

So I turn around content to capture this view right now, and return on the same path that brought me here. Back to the hotel, to my balcony, where the sounds of the tide and the ocean lull me into half sleep.

I pack my bags like a good little traveler. Head back to the airport, to come back to the confusing, sad reality I flew away from.

Goodbye Açores for now, goodbye and thank you for everything you’ve shown and shared with me. If life be kind. I will see you again.

From the ocean

Oct 17 2022 – Reality

• Oct 24th Rockyview CT scan 8:45 am
• Oct 25th Tuesday MRI bookings South Campus

Musings: CT scan they inject you with like a hot radioisotope of some sort… I feel like throwing up and peeing my pants at the same time.. thank goodness its short lived. On the plus side the tech loved my boots!

MRI feels like an edm concert gone wrong.. this one takes alot longer.. you do have headphones.. but I think they are tuned to senior citizen setting.. super loud either way. You get and IV for this too.. I got a student and they put it in weird… I can totally feel it.. but I guess this is how we learn right?

NOV 2 2022 – Up

I’m meeting the surgeon today.. we’ll get the results of all our scans..

I’m prepared for the worst news. But hey its alot better than what I’d thought. CT/Bone came back clear. The breast MRI revealed some weird ass tissue about 3.5 cm in size… just hiding there.. it might have been the bridge between my previous cancer lump and where its in now.. 2 lymph nodes… 

The decision? The whole left breast comes out.. Total Mastectomy with a host of lymph nodes that are close.. ALND Auxillary Lymph Node Dissection, 10-40 nodes this time.. Can we pray for clear margins please?

But I’m elated… I’ve been in such dire need of good news in a flood of bad.

NOV 3 2022 – Down

We are celebrating that no distant metastasis has been detected.. but for some reason my happy feels didn’t last a long time. There was still a lot of tissue detected in the left breast.. and maybe it was all the pent up fear from all this time.. but I just am a flood of tears, and inconsolable today.

Nov 22 2022 – Surgery day

It is surgery day. Its time.. I guess it natural to be nervous. 

Things are slightly different than the first time. I do get the same snow patterned smock though. But I get a bed almost upon entry, no long wait in the surgery waiting area. 

I’m not pre-drugged this time.. so I’m much more aware of when I’m being wheeled out. I’m aware of who I’m talking to and it helps the whole process. I think the fact that I’ve been here before.. in surgery, that there’s a higher level of comfort too. It’s a lot less scary than before. 

I’m wheeled to the hallway in front of my operation room, Dr A pops by to say hi, and marks my left shoulder with semi star of sorts. He’s always so nice and empathetic. 

A nurse fumbles through my charts curious to see if she was there for my last surgery in 2018. She’s doesn’t find it and the papers end up scattered on the floor. Oops! Are you good to walk? Why don’t you come on in?

I get to walk myself into the surgery room and plop myself on the surgery table this time.. Highly conscious of the fact that my smock is wide open at the back and that I’m completely au naturel underneath. The anesthesiologist starts my IV, “OK just a little you might start feeling dizzy now” 

Dr A offers to help him, and he responds “Oh you’re so nice” 

Talk of Christmas present shopping fills the room I haven’t even started this year… and I don’t even notice when I pass out. 

When I wake, its not the searing sensation I felt before, but a large soreness, across my chest and left shoulder. I immediately noticed the difference. I feel lighter in a sense.. like a physical relief, and it feels inexplicably nice. Perhaps it’s the residual meds, or maybe I was just glad to be alive. The nurses do the rounds and ask for my pain scale.. most of the time its around 2-3 now versus my 7 please give me drugs 4 years prior. But when it does get more painful, I up it to around 4 or 5, and am rewarded with drugs anyways. 

I’m very conscious by the time I’m moved to the day recovery area. I can’t wait to see Marc again a familiar comforting face. But strange, there is no one there. I wait and I wait.. a porter shows up with some of my belongings. I ask her to check if Marc was in the waiting room.. she kindly checks but no one there. More time passes, I have no idea how long, I pop in and out of sleep. The nurse pops by to see how I’m doing, “any nausea?, pain?” I ask if she could contact my husband. In my mind I’m almost furious now for some reason I’m convinced that he’s gone back to work even though he took the day off.. how can you not be here right now? 

I hear her call him on the phone, so he’ll be coming. Later he tells me he was here already soon after my surgery was done but they had told him to go home not to return until they called him, which they never did… In hindsight they probably didn’t want too many people in the recovery area.. to minimize germs. Makes sense, either way I blamed him for no reason, and when he did finally arrive I corrected my angry narrative and it was all okay. Marital crisis averted. 

I had checked in at about 7:30 am to prep for surgery and its now close to 5 pm. I had been feeling fine in recovery until I went to the bathroom.. one of the check marks of being released I thought. When I got back I started to feel queasy, I let the nurse know and she said she would find some nausea medication. But time passed and it was only getting worse.. Marc let the nurse know that I was ready to hurl. 

I had overheard a conversation she had a while back, how she was on a 15 hour shift and how she’s wasn’t going to go to any great lengths to do anything unnecessary. I had compassion for her, it did sound like a long shift and who knows how many days she’s been on for already. Many of our nurses and medical staff have simply been burnt out over Covid, and now RSV and flu season was ripe upon us. But another part of me was concerned for the patients. 

I motion to Marc to pass me the garbage bin. It’s too late and I heave up the ginger ale I’ve been sipping through the hours. Good thing you stop eating well before surgery, no chunks🙂

The nurse shows up with the barf bin. 

I now have anti nausea medication in my IV and another LPN is showing me how to empty out my drains when I get home. A parting gift of surgery is sometimes an implanted drain system. It works simply through suction, a bulb you squeeze to create suction, then it slowly drains away the fluids that your body creates while trying to heal itself. I get two, oh you shouldn’t have, and get to document how much fluid they are draining every day. When it reaches a small enough amount you head back to have them removed. 

I feel bad but I am barely keeping my eyes open while the LPN is explaining everything. I’d had read all about it before and dunno was just super sleepy. I’m discharged via wheelchair, I don’t even protest at this point I’m so sleepy, and am wheeled all the way to our car in the piercing cold. I’m very thankful to her, I don’t think I’ve ever been wheeled anywhere before but I was glad she did offer to put in all that effort for me. 

NOV 29 2022  – Tiny improvements

Recovery is going fairly well.. some days good some days bad and those ones I’m in bed all day my body hot from the excess fluids from surgery. Man if they hadn’t invented these drains my whole left side would have been swole. Probably with a huge fever too. This is medical advancement folks. If you know a doctor or nurse etc… go give them a hug. 

As I do better my mood improves too. I went through a few days of shock and sadness from the fact that my left breast is now a large flat scar. In those days.. I wrote, and “fixed” the bras I did have… “filling in” the side that is missing… trying to make temporary prothesis myself.. you know to keep busy. And those small, maybe sad efforts did eventually help me to accept my new body. 

This is still me. Imperfect, scarred. But me. 

I still have lots to be thankful for, I can still use my arm.. my mobility hopefully after recovery will be whole again. So what I will have to deal with are, inconveniences I guess. I suppose I’ll have to be extra creative with what I wear.. etc etc. Can we bring ruffles back in 2023?

Dec 1 2022 – Drain fever

After the drains are removed.. I start to feel sick with chills and a low grade fever… I spend another day or so in bed. I try to remember the times by the ocean. 

Dec 4 2022 – Pathology

So AHS implemented this swanky new system for all patients so you could manage appointments, track your meds, and view your pathology reports.

In the era of instant gratification and my own curiosity I found myself looking at the bolded flashy notification that a new report was here. My followup with Dr A was still a good week or so away. Should I look? I was already comfy in bed supposed to wind down for the night.

I took a deep breath to ready myself. Yeah of course I was going to look. I started to pour over the medical lingo and remembering that my pharmacist friend said she only ever looked at the diagnosis line:  Recurrent/metastatic invasive ductile carcinoma

Well that sucks. Literally anytime I see the word metastatic  I have a mini stroke. But I think I know in this case that its regional metastasis (spread) and hopefully not distant….

I keep reading through and I can’t quite figure out if we got clear margins (aka successful surgery)  But I get to the lymph node count, and I stop… They removed 17 lymph nodes and 7 of them had cancer, the next line 5 additional nodes may represent lymph  nodes completely effaced by tumor. What does that mean.. effaced.. I immediately pictured a tumour Pac-Man eating up 5 adjacent lymph nodes..

But that was details.. 7 maybe up to 12 lymph nodes had cancer? I thought we were only looking at two.

I had been watching the latest breast cancer oncology conferences on YouTube and researching the latest developments on hormone positive breast cancer so I knew enough to know.. that this was stage 3 breast cancer. It’s not terminal yet…but it was a whole other stage higher than when I first when into surgery.

I lay emotionally and physically paralyzed in bed, just staring at the ceiling.

DEC 8 2022 – Recovery and friends

During recovery time friends have been visiting me at the house. I was glad for the distraction, and would try to make some tea and put out some snacks to make them feel welcome and comfortable. Hosting was something I grew more and more to enjoy and it was always nice to make small treats for people and to hopefully make them feel a little special.

And of course I knew they wanted to bless me as well. I got an amazing cancer-curated get well gift basket, two in fact, complete with books of hope/prayer, and healthy snacks. People dropped off soup, an encouragement message board, flower arrangements, even groceries. I didn’t necessarily need that much of anything really, my freezer has been bursting at the seams since my dad brought over an ocean’s worth of fish cause he read somewhere that it was healthy, but it was the outreaching of my friends and colleagues that blessed me the most.

Oh, and my colleagues at work even made a sizeable donations to Rethink Cancer and the Canadian Cancer Society! I was floored by the generosity.

The visits and conversations were good for my soul, its nice to catch up about other things in life and not think about cancer for a while, and did a lot to uplift my spirits during hard days.

If you are reading this and you know this was you, thank you.

Your friendship means more than what words can convey.

Dec 10 2022 – A burst of fluids and a burst of tears

I wish I could say surgery recovery is a nice linear progression towards normalcy but its really unpredictable. You never know if it’s a good day where you have good energy maybe even to squeeze in a light workout, or if you’re in bed for hours again cause your body is exhausted. By this time I had thought the worst was pretty much behind me, so was trying to get in better shape to prepare me for the chemo road ahead.

Here and there over the days I would have random fluid leak out from my drain openings (one of them took a bit longer to close).. not like gushing but enough to stain your clothes and drip down the torso.. I would in these cases just try to soak it up with more gauze. Slightly inconvenient but you still could do most of the things you want as long as you’re bandaged up. After one shower before bed though I started to leak through a completely new spot on the surgery incision this time. This had never happened before and I was all of a sudden worried that my stitches were coming apart. I stood shivering by the sink, half from cold and half from shock using gauze after gauze to soak up the fluid coming out… the more I pushed around the area on my chest more liquid would ooze out.. and it would get more red and towards the end thicker.

I tell Marc that I was leaking from my scar, he’s resting in bed looking at his phone, seemingly unbothered at what was happening. I turn back to my leak… I had figured out where most of the liquid was coming from.. and if it wanted to come out so be it.. I kept pushing until the bulged area was flat.. it seemed that that was the most of it..

I added a steri strip this time to the leaky area, and thicker gauze on top of that and taped myself up again. It should be good enough to get through the night. I head to bed but I was fuming. The random leak had caught me completely by surprise and I now realize I do not do good at surprises at all with anything cancer. If you tell me I will have this or that horrible thing happening to me in advance.. okay sure I can deal with it..

But the nature of the surprise.. is just so much more ominous to me because the surprise can take a turn for the worse and not only can you not prepare for these things.. it just taps your coping reserve so much when it was running low anyways. I’m fuming in bed and asked Marc why he didn’t seem concerned, he gets mad and defensive as well, saying he was looking it up on the phone and it said you can’t do much, it was the weekend and we can’t reach out nurse navigator anyways.

I’m unsatisfied by the answer and storm off to the other room, the one where I had been sleeping separately to recover from. There I run through my mind again why I needed to drag him through this at all. Who wants to stay married to a lemon. A stage 3 wife who cant guarantee that she’ll be around  for the next 10 years. Who will no longer be able to provide children, who may very well lose her independence in the later stages of the disease. Why subject him to this and myself to someone that might not care when something like this happens?

In hindsight, I think all I wanted was for him to come over survey the damage and to say something along the lines of “Holy crap! put some pressure on that” just to empathize with me a bit. I did eventually tell him that when he came into the room later to talk. As we explained ourselves back and forth. I blurted out, “If this is too hard, I can just leave, this isn’t going to get any easier“, through my streaming tears I cried out that I was sorry. Sorry to do this to us, sorry to be the one that failed.

Being the mathy-engineer he was, he tearily said that, many people may just wonder why these things happen.. but probability wise, it was bound to happen to someone, he was just so very sorry that it was happening to me, and that he would always stay by my side no matter what.

Dec 11 2022 – Giving and Joy

When recurrence happened, I had to give up everything I had my tentacles in. Things were starting to get interesting at work with a larger focus on climate, and renewable energy. I was going to volunteer data services in hopes that Rachel Notely would get back into power soon. I was still volunteering with the logistics Red Cross group, my philantropy with the Canadian Red Cross Tiffany Circle. My summer dragon boat team was organizing winter workouts… However all of these had to be canceled or withdrawn from because Cancer.

I held onto one thing though, choir. Somehow I knew that staying involved there would give me strength through this year, and more importantly something not cancer to think about. Yea, I missed a ton of practises, but I had online guide tracks, and the music helped to keep me sane. New West always does a Christmas concert at Jack Singer so I made it a personal goal to try to recover enough to be there, even if it was on a stool, or in the audience.

Before all this I had volunteered to help with the Gifts Back arm of the choir. One of the things that drew me to this group in the first place was that they said they sang before at shelters, and hospitals. I loved that aspect and wanted to continue work along the lines. Love through music is something that needs to be shared! With those who are outcast, sick, downtrodden, who may not have the ability to access.

This year the NWSC was trying something for the first time, our normal concert would be on the saturday, and on the sunday, we would have a free concert for the vulnerable in the city, complete with gifts and toys for kids at the end of the performance!

I was still really new to NWSC, but was glad to lend a helping hand in this new endeavour! We had started some talks, and I had started some spreadsheets and tried to reach out to a nonprofit or two.

During good days, I would process demographic counts of how many kids may be showing up from various nonprofits, over an hour or two, here and there, before slumping back into bed, exhausted.

But it was crazy how successful the event turned out. We had over 1000 tickets spoken for, partnering with over 10 local nonprofits, and 800+ gift bags and toys to give away. We even made the local news, (my 4th time btw LOL). Alot of the credit goes to our operations manager who is a literal force of nature. Her dream blessed so many including myself; during these busy and tiring days, it didn’t matter that I was freshly cut, or what I had lost. I remember sitting in bed elated, happy to be giving. Simply blessed just to come along for the ride.

Give, give even when you are hurting, because then you will not hurt as bad. And what else is there really to life anyways, if not to give?

DEC 25 2022 – Christmas blessings

With choir breaking for the holidays I find my worries and anxiety creeping back. I no longer had my trusty distraction, so needed new ones. I turn to Christmas prep. My energy and arm range improves with every day so I put up some Christmas decorations and try to get some gifts wrapped. I simply don’t have the energy or time to finish shopping for everyone I’d like to though…. But another friend said that people would understand and I realized and also hoped it was true. I’ll make it up next year I think to myself

Christmas eve we are able to spend with Marc’s family and that is always a good time. His side of the family is huge while as all of my relatives are still far away in Malaysia, Singapore, or Australia.

Christmas day we spend with my family, it’s a bit muted this year as my brother’s family moved to BC last summer. I do invite other friends though as I never know if there will be friction between Mom and Dad so “buffers” are always a good idea. It all ends up great though.  A flurry of prepping and cooking, rinse and repeat. I usually don’t get to fully enjoy Christmas until Boxing Day really when I can sit back, warm up leftovers and binge watch Christmas classics like “It’s a wonderful life”.

But I never regret the work, and end up doing it every year because the connection is worth it. I realize that it could have been a very diffferent Christmas time this year.. but I’m pretty thankful that my surgery recovery time aligned to allow me to enjoy the holidays.

Dec 27 2022 – Date with a warrior

I hadn’t seen my high school mate for such a long time, maybe 20 years? We were never besties, but I remembered she was a full of life, jet-setting person that followed her passions with no fear. A few months back someone had started a go fund me for her, she had stage 4 cervical cancer.

I was shocked when I saw that…. and decided to reach out via Instagram. She replied and we decided to meet up. We had so much to talk about!

We meet up at a coffee shop. She’s wearing a cute leopard head cover having already lost her hair, and fashionable pearl earrings. I remember her always being a looker, and she hadn’t lost that at all.

We end up chatting and connecting over so many things, life, shared traumas, faith, and of course cancer. I remember feeling the frustration and anger emanating from her as she talked about her cancer experience. The struggles she had at not being heard at all by her doctors during the earlier years of the disease despite having clear symptoms. Having to push, fight, and advocate for her own health, having to always ensure that people were doing the right thing for her, navigating misdiagnosis. All while having to manage the emotional minefield of mortality, and all the crappy things that happen along the way there. I look back at my own treatment history, and realize I’ve been lucky. Lucky to have a good surgeon.. etc, my experience so far hasn’t been as frustrating.

Its such a refreshing conversation, because we both get it.. I don’t have to put up with wry stupid comments like “Oh, it’s not so bad” or “Well, you don’t look sick”. We can call it like it is.

DEC 28 2022 – To poke or not to poke

It’s another appointment day. Today I’m getting an ultrasound, and potential biopsy on my right somewhere. This appointment had caused confusion before because when I found out they wanted to look at my right side? I was like… how many boobs to I need to cut off? One, two? Come on man. We had decided to do only the left because the surgeon wasn’t as concerned about the right? But I have no idea what it is they want to see and why, but I assumed it was somewhere on my right breast or armpit.

We head to Foothills again, down to mammography in the basement. I get in fairly quickly and the technician is very friendly. She reminds me of an older familiar auntie. I’m gowned up and we start the ultrasound. She gels me up, but its not where expect to be looked at…. she’s looking way up on my right clavicle and starts moving up my neck. I’m paralyzed in surprise (remember I don’t like those right?). I remember my fresh conversations with my friend yesterday about how many tumors riddled her lungs and other parts… and its at this point.. that I’m thinking metastasis. That cancer now no longer just can affect my breasts.. now anything is fair game.

The technician disappears from the room to consult the radiologist and I’m left alone on the patient bed. I can’t help the tears that are welling up in my eyes, knowing, remembering. She returns with the radiologist to double check the area. The tears are freely rolling down my face by this point, disappearing behind my ears. I’m so glad I’m wearing a mask, but I’m involuntarily shaking, despite trying to keep as still as possible.

The Radiologist finishes examining and tells me “I don’t see anything to biopsy today, I don’t see anything bad.” The technician reiterates his good news and pats me on the back, “No poking today, Good!” I’m allowed to leave, like a pardon on death row.

I unravel under my mask, and emerge unscathed,

But in the back of my mind.. will be always shadows.

Dec 31 2022 – Oncology university

• ER PR + grade 3 IDC
• Precision medicine, targeted therapies, immunotherapy, ran out of money here….
• CTs: Cryotherapy – hands and feet… head?, Amifostine used with Cisplatin, melantonin, coriolis mushroom, Theracurmin, Vitamin B6
  • Only cold caps really work -20 degrees constantly, use tight gloves/bandages to constrict blood flow to fingers toes especially, do both
• When would treatment start?
• Intermittent fasting DURING DAY OF CHEMO to let the body metabolically process drugs
  • Patients seem to do well
  • https://foodforbreastcancer.com/articles/fasting-during-chemotherapy
• Will order a PET scan and I can decide if I want to do it or not? Slightly more sensitive than CT but take about half million cancer cells to be detected via scans. Treatment philosophies change from Stage 3 to 4. At stage 3 they still try to “cure” you. At stage 4, they work to prolong quality of life.

Adriamycin – thinning then everything

Taxol – sudden hair loss, neuropathy?

Jan 3 2023 -Date with an Oncologist

Once again it’s another high low sort of day. I’m so glad I asked for a new oncologist. Dr F seemed very empathetic and very open minded as well which is nice. Our consult goes really well. We go all the way back to 2018 and the decisions made at that time. Regrets but also understanding for me not choosing to do chemo the first time. For young people, long term permanent side effects can be heart failure, neuropathy (nerve pain) and one of my biggest concerns brain fog.. a loss in mental sharpness that could affect my career. At that time… for what we knew it was still an early stage, at that time the oncodx score allowed for a loophole,  but now she tells me how serious this has become for someone my age, that she thinks cancer is most probably in my bloodstream, hence the importance of doing chemotherapy. As far as chances… chemo may add another 10% to survival and when that course is finished we’d be looking at suppressing my ovaries as well 7% .  The woman in me is strong… estrogen and progesterone markers showing 7/8 or 8/8 (these are marks my mom would be proud of). But these hormones are feeding my cancer.

I’ve already considered all of these factors myself and at this point and with how aggressive this cancer seems to be (to me anyways), I know its time to face the music. At this point never having children will be a reality, and the stakes of not doing chemo seem way too high.

The prescription:

Dose dense AC chemo rounds followed by rounds of Paclitaxel

We start next Thursday.

Jan 3 2023 – The boy the mole the fox and the horse

Jan 4 2023 – Overwhelmed

I’m reeling
Itchy, from the rabid squirrels darting in and out of the nooks and crannies of my mind
On their backs they carry the one hundred and one things I need to do for chemo

I’m anxious 
Sweating in anguish like Jesus in the Garden of Gethsemane
Father if it be your will let this cup pass from me

But I’m not trying to save the world I’m just selfishly trying to live

The cost sounds too high
Like a poorly made, FTX hyped, debacle of a luxury 
Heart failure? Liver damage? Brain fog? Leukemia? 
Exchange it for your life
Because this is the price you may have to pay

I can
Only stand on this deserted island
Waiting to board a ship full of pirates
Her name? “The Red Devil”
She burns through your veins

But may somehow be your Savior

Jan 12 2023 – The heroin addict

It’s come, the first day of chemo. I’ve been running around trying to prep for anything and everything, Cooking up a storm and freezing, juicing ginger lemon kale ice cubes, packing my chemo bag, ipad, ice gloves, ice socks, ice caps, cooler, small snacks, medications, systemic treatment booklet… etc etc.

Our appointment is first thing in the morning and so we are up by 7: 30 ish, I have to take about 3-4 medications about an hour before chemo, 2 anti nausea, one steroid, and my usual others. We had been praying for an awesome RN especially for our first round. Marc joked “what do the subsequent ones become mediocre?” The answer nah, we always want awesome ones.

Heading down into the basement of Tom baker, we are eventually greeted by a tall blonde peppy RN by the name of Karen but she’s nothing like the tiktok ones 🤣 she was amazingly nice!

She’s super informative and walks me through everything, helping me warm up my compress to keep my arm warm so that the veins show. I’m injected with two “red devils” first, Adriamycin, and she monitors my veins as it goes into the IV. This stuff can burn tissue so we want it to be traveling through veins and nothing else. I feel it going in, I had read somewhere that someone thought it felt like wasabi but to me it felt more like peppermint. After the two AC injectables, we we move to the Cyclophosphamide, which is a clear looking mini saline pack type thing.

The whole process takes about 3 hours.. the nurses keep asking me if I have a headache.. I say no but later I remembered I still have the ice caps on my head which probably helped. When I get home I start to feel a bit of a headache. I’m still cold capping a bit, and things are pretty good in the afternoon. I manage my nausea with like 20 gin gin candies.. when it gets worse I try the orange pills, and the god send pickled gingers that my friend made me earlier.

Nausea builds a bit through the evening, but the turning point was when I start to feel pins and needles in my calves.. first the calves.. then my forearms.. and then it builds and builds. It’s like the most intense pins and needles I’ve ever felt.. and it eventually moves up my neck and ears.. my thighs.. knees… This is neuropathy, though, I’d never think it would feel like this. 

When its super bad I go upstairs and lie down or have to rock myself back and forth. I’m thinking is this what heroin addicts go through somewhat during withdrawals. My hands are involuntarily curling in like witches hands. I try to stand and walk around seeing if that may help.. but not very.. I’m no longer stable standing up and it feels like my calves and stomach are simultaneously seizing up.

This continues for a good 7 hours.. I’m sitting up in bed, sometimes some tears running down, hunched over to manage the feeling of nausea. But I’m able to finally rest around 2 am when I noticed that both feelings have subsided. The joy cometh in the morning!! And I was glad as peaches it had.

Jan 20 2023 – Psycho oncology

I had a lovely zoom call with the coordinator from AHS Psychosocial support, I thought I was doing fairly well emotionally but it was just nice to have her affirm all of the emotions and feelings I have having. I had some tears but emerged from the conversation alot more hopeful.

Notes in Dream journaling

• Allow yourself to dream regardless of if it happens or not be fantastical and to work through it in journaling
• Rate in practicality which ones to chase
• Allow yourself to play
• Mindful in play and hobbies not in achieving light but as a way to sense what’s around
• Being resilient you are coping well and using tools well
• Not “strong” but “resilient”
• Allowing feelings Cancer is suffering
• Cancer happens to all, regardless of shape, size, age, merit
• Giving back gives you control

Jan 25 2023 – The  Drugiverse

I’m collecting prescription drugs like a hoarder so during chemo week it’s a small symphonic feat to orchestrate which pill when etc etc.

Doesn’t help that they all have two names like Kleenex and Tissue. I’m finding it hard to get their names right so every time I refer to then while talking to my oncology nurse I end up butchering the name. Wouldn’t it be cool if they were all characters in my cartoon Drugiverse?

INTRODUCING 💊💉🧪💊

Actual Name	Nickname	Pronunciation	Personality
Doxorubicin	Adriamycin	dox-oh-REW-beh-sin	Sassy and seductive killer, she gets her way, her superpower is Persuasion, and she always wears red.
Cyclophosphamide	Cytoxan	sye-klo-FOSS-fuh-mide	One-eyed killer, takes the immune system down with one blow. Talks so much that he may cause headaches
Ondansetron	Zofran	on-DAN-se-tron	One of two dynamic brothers, sworn to fight the injustices of Adriamycin and Cytoxan. Keeps the streets clean from vermin (vomit). For some reason always wears an adult diaper…. must have problems with his bowels
Pregabalin	Lyrica	pree-GAH-ba-lin	Sultry jazz singer, often found in smoky back alley speakeasies. Uncanny ability to soothe nerves with her voice
Dexamethasone	Dexasone	dex-uh-METH-uh-sown	Dexa can always be found at the gym roided up, always beefy and always hungry. Secret power: fighting inflammation
Aprepitant	Emend	a-PRE-pi-tant	The second brother, visual opposite from Zofran, always seen in fancy outerwear and hats. Also helps to keep the streets safe
Pegfilgrastim	Lapelga	peg·​fil·​gras·​tim	Sharp and intelligent brunette, top of her class and arch nemesis of Cytoxan. Long standing boss of white blood cell enterprises.

Jan 26 2023 – Chemo round two

🤢🤢🤢

No crazy nerve pain thank goodness for drugs! But I’m nauseated all night, and it’s another sleepless night. 

Jan 30 – My lovely locks

I had been wearing my amazon special migraine head caps in hopes that it would help minimize hairloss, but I’m not too sure if is working all that well. Depending on your follicles.. hairtype, hairloss may occur quickly or a bit more slowly. Not too sure where mine lie, all I know is my hair is starting to thin out in handfuls. It’s no surprise mind you, the bald head is like the poster image for breast cancer. “Strong” women flaunting their shiny scalps, waving their headscarves and wigs in glory. I thought I’d be waving my pumped arm too in defiance of the disease. Being strong at the loss of my hair but it affected me more than I would like to let on. Maybe if it just fell out with no pain, but I could feel the death of each follicle.. screaming at me the thousand little aches on my head. It was more annoying this way.. a constant reminder 

I love my hair, I love curling it, styling it, I twirl it around my fingers, its a source of tangible comfort. Something I could hide behind, or push away. 

But it has to go soon.. and I’m sad about it, and tired today too. Back to bed perhaps. 

Feb 1 2023 – You make me weak

The second round of chemo made me quite a bit more tired than the first one. I had upped the zofran because my other nausea drug wasn’t working as well but one of the side effects of that drug is 💩 problems i.e. constipation, and I guess I didn’t take enough laxatives to combat it…. so one day…
I fainted in the washroom, completely blacked out and fell. I felt light headed, sweaty, and painful leading up to it.. and my hands and arms had started to curl up uncontrollably like T-rex hands. When I came to, Marc was calling out my name and was trying to sit me up, I remember I was crossed-legged on the washroom floor, barely conscious. I was still T-rexed and super weak and all we could do was pull me face-down onto the bed where I slowly regained full consciousness and feeling back in my arms. I was completely wiped out and just laid in bed for what seemed like quite a long time.

When I was better, I cleaned myself up and surveyed the damage.. there was a cute little indent on the wall where my head had hit. My back was killing me too, I must have fell all weird on it. I had completely freaked Marc out (he said it sounded like a whole cabinet had fell) and even Samwise was barking and sniffing at me the whole time. This was probably one of the lowest moments in a while for me. Not only was it super embarrassing and scary…..it just started off a tearful cascade of “why me.” Why was this happening to me…? Will something weird and scary happen every single round? I still have 14 to go! How am I going to survive this.

A bit later on, a friend calls me to see how I’ve been doing. I start to tell her how my morning went and just started bawling on the phone… it was still way to fresh for me… Somehow, she also pours out the struggles she’s been going through quietly over the last few months and we both just ugly cry to each other. Both grieving in a way, and both trying to console each other at the same time.

My silver lining in these past days have been the visits and conversations with friends and family. It’s been my strength, a way to keep sane, and the reason for continuing to fight.

Feb 15 2023 – The existential nothing

Chemo round 3 and we are hoping that we’ve figured out the “ebbs and flows” of how each cycle goes. By now I know that the first 3 days after chemo I’m fairly afloat energy wise sustained by the steroids that I’m taking, so during these days I try to get a walk in since I have the energy. I always have nausea and the feeling of being “thin” and my limbs feeling like jello these first days, and I’ve started to get some dark age spot discolouration in my face, hands and nails.. something to talk to my nurse next week about perhaps. But day 4-6 just seems to just floor me, its taking longer to recover from each cycle now. During these days I can barely cook a simple breakfast without it exhausting me and the meal train that friends have been bringing are becoming more and more needed.

The fatigue is something altogether different. Not the same as when you’re just tired from the day and you just want to lay down for a nap and usually quickly rejuvenated.. this fatigue seems to come with the numbing of nothingness, where all thoughts go to the silent killing fields to die. Where you just sit after a meal, staring into the wall or the ceiling because that’s all you have energy to do. There is no caloric space for dreams, meditation, reading, self-development these days because all you can do is lie there and wait, with vacant black eyes, waiting….

Waiting for yourself to eventually return.

Feb 23 2023 – Goodbye Red Devil

For every cycle comes the chemo dance. A series of to dos, should do, wish I could do before the infusion day. My chemo days are thursdays….. which usually translates to a listless weekend… Death Valley I’ve now coined it. Where you delve into the depths of nothingness, fatigue, and gasping for breath after you’ve slowly climbed up a flight of stairs. Or waiting for your heart to stop leaping out of your chest when you’re just laying there…

By the time you emerge, you’re just well enough to start the chemo dance again, preparing for the next infusion day.

Mondays are bloodwork days. If I’ve been on the ball, I’ve already scheduled my appointment and I usually only need to wait about 30-40 mins. If somehow they’re already booked up or I couldn’t get a date I get to wait around 2 hours for the next available spot. If I’ve been good.. I would have drank enough water for the technicians to find my veins… If I haven’t I end up pumping my arms when no one is looking, like a crazy person in the chair while I wait for my technician to show up.

Tuesday is meet your oncologist day. This can also take 2.5 hours. You go over how you feel, and any side effects you might have encountered. You ask questions you forgot about last week. You get weighed. They review your bloodwork to make sure you’re fit enough to get blasted again on Thursday. If you have energy after this, you make something, cook something and freeze it for Death Valley days, maybe even get a house chore or two in. If you got ever more spunk, you might get a choir practise in.

By Wednesday its time to hustle. You need to drink 2 L of water today. Make sure your ice packs and ice chips for your mouth are frozen. Maybe do some food prep, and this is they day you start intermittent fasting as well. Because you read on multiple medical journals that this both helps with symptoms of chemo and also helps chemo find those little buggers better too.

Thursday is go day. Pack the cooler, pack your ice water. You go to Tom Baker and watch them slowly inject those two “Red Devils”. You eat ice cubes. Then a 15 min flush, then another hour of Cyclophosphamide, you eat more ice cubes, then another flush for 15 mins. And you’re outta there.

You go home, you’re okay for a little bit but you’re still trying to drink at least 1-2L of ice cold water this time. To try to prevent mouth sores. You brush your teeth with ice cold baking soda salt water, toothpaste takes a break for now, replaced with more baking soda and salt.

You’re nauseous the first night, your nerves start to fire like crazy so you take pregabalin. You take everything else to keep the vomit at bay. You don’t sleep much the first night, so the next day you zonk out.

You’re tracking your calories now.. 500-700 for the next few days, until you stop taking the steroids. If you remember, you take your veggie powder ashwagandha mix in your water.. or soy milk.. To prevent brain fog. You make it to day 3 after chemo, your urine is no longer red from the drugs… and this is when you descend into Death Valley.

This cycle was slightly different though. I went through all the motions but in my mind everything was sunnier because I knew it was the last of the “Red Devil”. This was the last of this type of chemo dance because now I have 3 weeks to recover. To just be me. A break from the dance.

Mar 11 2023 – The temptation of normalcy

I might as well be walking on clouds, I’m so happy to have this 3 week break, by the time I get outta that last Red Devil Death Valley I get a whole week of veritable “almost” normal to myself. A whole week not in bed.. but free to enjoy more walks, more food, and not be completely winded by going up a flight of stairs. I make the most of this week, see friends and family, on the days I wear a wig.. nobody ends up staring at me and it feels even MORE NORMAL and it was oh, so glorious.

Mar 16 2023 – Hello Paclitaxel

The small break feels like it went by so fast. But now I’m ready for the next phase, weekly cycles of this new drug for 12 weeks. I’m a bit apprehensive, with new drugs comes God knows what surprises….

Paclitaxel is known for causing peripheral nerve damage… also may cause rashes.. severe allergic reactions, along with the other better known side effects like hairloss, nausea, vomiting, etc etc etc.

All of this is swimming in my mind as we walk towards our first infusion. I get a new teaching nurse again. She prattles off the 101 new things that could go wrong during the first infusion. The biggest concern is a strong allergic reaction, so if at anytime, she tells me, I feel anything off, trouble breathing, back pain, chest pain, headache… call her right away.

She is very VERY concerned about using my left arm, side of the surgery, so I offer up my poor right arm which has been poked so much. So much confusion still exists about right side left side. I had heard my surgeon mention many times that it should be fine to use my left, how developing lymphedema (mass swelling) on the left really shouldn’t be triggered or aggravated by these pokes. And I personally wanted to rotate veins to give my right arm a rest but most nurses seem to gravitate towards the right. Lymphedema they say, and usually I end up conceding.

I had been bad… didn’t drink quite enough water so she’s looking at a vein on my hand… tries it.. but it wiggles away. I point out the vein that has been used a few times now on my wrist and she tries that one Success… she says. Yup old faithful vein.

So because I don’t want to lose feeling in my hands and feet permanently, I’m wearing frozen gel gloves on both hands and feet before, during, and after the infusion. I’m also doing ice cubes, I hella don’t want no mouth sores. I like eating wayyy too much.

1.5 hrs later. I have emerged with no crazy allergic reaction. So it’s time to go home and see how it goes.

A few hours pass and I get those hot flashes the nurse mentions, I also surprisingly get a little nauseous, but its no where as bad as the Red Devil. And I notice tingling in my calves… damn, I didn’t have leg gel packs… I look for my trusty nerve pain friend pregabalin.

Mar 27 2023 – Icarus flew to close

By now I’ve had 2 cycles of Paclitaxel under my belt, and whoa what a difference from AC. So far anyways. I do anticipate nausea and some nerve jitters. But there’s NO DEATH VALLEY?!?!?! I can scarcely believe it. Maybe things are too good to be true and stuff just gets worse later. (There’s trusty old pessimistic me)

But for now I’m revelling in the almost normal energy I’m enjoying for the last while. I do more around the house, I walk Samwise more, I see friends, and somewhere along the way…. I almost forget I’m a chemo patient, and I also forgot to wear my mask more.

That’s how I think I got sick anyways, I’ll never know for sure, but I started to do my errands without a mask forgetting that I was immunocompromised. Forgetting I’m still in active treatment, even if it was just for a day, somehow I got sick. It could have been other things, people that visited, friends I saw that might have been incubating something, because no one I saw had symptoms. I had always been careful about that. And we still don’t know what I caught, some viral thing that maybe didnt affect others that much but left me miserable.

It started with chills and aching on saturday night followed by a fever, progressed with nasal congestion, coughing, and even higher fever. I also somehow food poisoned myself I think with way too old soup I shouldn’t have eaten. Or it could have been something else, some stomach bug.. either way I end up fainting again with a wicked stomach ache waking up on another bathroom floor. By the 4th day of fever I was starting to forget my phone number, or what I even did just a few hours ago. I started to have nonsensical thoughts.

I went to emergency twice because we needed to rule out neutropenic fever that maybe caused by chemo. At Rockyview the young blood tech was callous and ended up puncturing through my vein, so I go home with a nice set of bruises. Nobody after the 7 hour wait tells me that I can take medication to manage my fever, and because my systemic treatment booklet on fever says not to… I don’t. Not until day 5 of being sick and as I’m shivering I have absolutely no appetite, so I’m barely eating or drinking. My temperature now is hitting 39 and 40 so we end up going to Foothills emerg where the care seems to be much better. I had taken some meds to be able to make the trip there and when my temperature peaks again at 38.6, a nurse exclaims you have a high fever! YES that’s what I’ve been trying to tell you Here take 1000mg of Tylenol. I can do that?? I could have been doing that this whole time??

Well, because my bloodwork had been cleared by now…. Yes.. yes I could have.

Icarus flew too close to the sun and was burned. And as I burned with fever, I remember thinking how absolutely nothing matters if you are not healthy. I thought about revising my will, cause this sure feels like it could be the end. I remember thinking that this is worse than Death Valley. I would have traded it for another round of the Red Devil, the devil I knew. I remembered that I am still a chemo patient, more vulnerable than usual, a lot weaker than when I first started. That I am not and won’t be anywhere close to a state of “normal” for a while.

This is simply where I have to be for now…

And on day seven. My fever lifts.

Packages

When you are shaking, shivering, cold under cover upon cover
Trying so hard to get warm, but when you are, you burn hot
Too hot, so hot you

Forget who you were '

And while you do the dance again
Package upon package arrives

Your vain attempts to feel alive. 
For a moment that fleeting moment
But you are too weak to open them

You do not even care for them anymore because they are a sorry reflection of your NEED
Your vanity
Your consumption

And you are consumed with fire

All you want is to be well again. To be able to sleep, eat and rest without coughing up a lung. 
What use are your pretty dresses to you now? 
That fresh spring trend, those puffy sleeves and reminisces of the 90s when had something 
you don't now. 
Your health. 

What does privilege buy you now? Does it buy you a green casket?
What do dollars do for you now as you waste away slowly. 
Waiting, waiting, waiting, for life to continue or are you waiting to die? Who would remember you? 

And...

Who would open your packages then. 

Apr 14 2023- Lets get er done

When I’m just well enough to hobble around, we go for the chemo round I missed while sick. I did not want to put off treatment longer than I had to. Lets get this stuff done!

I find my mood directly follows how well I feel, I guess thats a perfectly normal reaction to things. When you feel ill, exhausted, weak sauce, its normal for you mood to dive down into the crapper. You feel defeated, no motivation to do anything cause you really can’t, and you wonder how much longer you’ll be sick, in the valley of the shadow of death. But when things start on the upswing, when I can actually do some chores around the house, some cooking, and go for a walk again even if it killed me, I loved the feeling of getting some semblance of normalcy back. Some sort routine, some sense of getting independence back, that you’re not a patient for a little while at least. That there was hope to get through it all, hope for the future.

I’m now at the halfway point of my chemo and it definitely feels like a milestone, something for me to propel myself forwards at least. You’re halfway there, at this point of the journey, you can start to see the potential light at the end of the long ass tunnel you’ve been in.

Apr 21 2023 – An Injection of life

I’ve been down in the dumps a bit lately to be honest. Now just beyond halfway point of my chemo cycles and a few other treatments in my line of sight I had already been thinking of “when is the next time going to happen”. If you read a few scholarly articles on the stats of people with my state of disease… most of them point to a median of 5 years. My state of disease on paper pretty much has the worst markings… if patient is 40 years of age or younger (check) prognosis is poorer (dammit), if more than 7 lymph nodes are involved, poor prognosis (sigh), if your cancer is ER positive, if you cell grade is greater than 3 (yes and yes), you are at high risk of recurrence. I hit all them all so my median survival years before I hit stage 4 aka terminal is statistically around 5 years.

I guess that makes sense.. I went from stage 2 to 3 in 4 years, so if you plotted my history on a linear graph, 5 years is generous. Five years before I may become terminal. Before I face more treatment, more surgery, potentially high loss of quality of life, waiting breathless and exhausted in whatever state just waiting for the loss of my life.

This is probably very hard to read because who the hell wants to think about their death. It’s highly troubling to be sure.

I know that I need to emotionally address the elephant in the room for myself so I check out a book called Die Wise by Stephen Jenkins. He’s worked many years of his life in palliative care as a social worker, Harvard graduate, so I figured he may have some insights on the whole thing. I’ve yet to get through his whole book but I’ve gleamed some interesting truths from it. One was that we in North America wake up each day thinking we have a right to live another day. Death as a subject is very taboo, we will in any shape or form possible try to extend life, regardless of what that life might look like. We feel like we have a right to a long life, and plan our lives accordingly. Five year, ten year plans, pushing off what we’d really like to do until retirement. Whereas in many parts of the world, especially where living conditions are very tough, every day you wake up to alive, is a gift. So far, it seems like the author advocates for dying well (I’ve yet to get to this part of the book), vs dying badly, and that death is something that as natural as being born in the first place. But the main jist I got so far is that I should focus on living well right now.

Griefwalker a Stephen Jenkins documentary on National Film Board of Canada

I admit I have a problem with this, a big part of me wants to continue the plans I had for long life, work 15 more years, hit retirement and enjoy life then. Continue paying off the mortgage, maybe buy a new car, continue career dreams. If I have a median of 5 before shit hits the fan… my plans need to change and I hate it when my plans change.

It’s also very tough to talk about this with friends and family. Everyone wants you to “get well, get better soon okay” as if all you have is a cold. Newsflash, most people don’t get well from cancer, most types anyways. They just get more time. When I list the stats, they stick their heads in the sand and talk about miracles, and how certain statistical models might not be accurate.

I prefer to think more realistically. I do not want to put my head in the sand, I want to face my truth. Positively and with hope of course.

So I start to think about my plans.. but they naturally turn to end of life kind of things.. like thinking about fine tuning my will, doing research on eco burial sites, how to divide my money so that family is taken care of. Of course all of this just gets me more depressed because innately I want to life a long healthy life. And when I get depressed or bored with life, I turn to my old nemesis, I just end up filling that numbness with more things, more shopping, more TV, and endlessly scrolling through social media.   

I walk around with that cloud over my head until I meet a friend for lunch. She is something like a free bird. Wait, bird would be an understatement. She’s like a phoenix. Ever connected to the spiritual, ever pushing to live a fulfilled life, and curating what she sees and hears around her for the better higher self. We are quite a few years apart in age but despite this we really connected. I was at first intimidated by her success and status, but as we talked and got to know each other more, we found we had more in common. It’s not very often I can really talk and connect with people about the deeper things in life. I can think of 2 or 3 friends I can really do this with. But as we chat over lunch, and as she encourages me to be kind to my inner child, stop judging myself,  push to listen to my true higher self, and just do or don’t do things if I feel like it (not should), I feel that cloud start to dissipate.

I tell her about what I’ve discovered in the book and she fully understands “When its time to go its time to go! God when it’s time just take me, and make it quick.” What a relief I tell her, cause most friends I talk to want me to fight to the bitter end, and I just can’t picture myself living my best life for years or months sedated on some hospital bed or in palliative care. The best life really has to be now, and as I tell her my passions..music, pursuing purpose, giving, creativity, art, and most importantly growing as a person emotionally and spiritually, continuously breaking down past trauma and negativity that holds me back. I’m reminded of the things that really matter to me. How all the things I’ve collected will be left behind, but what I will be the most proud of, if I have ten, five years, or even just a day left, is how far I’ve nurtured my soul and grown as a person. The wisdom I’ve gained, the internal strength, the way I’ve shared with others, and the journey that I’ve come so far on, alone in my quiet musings and self discovery, and with the help of others who reached out when I could not. That is the life that has true meaning, one that is lived.

So live Sylvia. Live well, live full, no matter that you’ve just been stamped with an expiry date.

May 2 2023 – Navigating Death and the fullness of Life

I watched the Griefwalker documentary again for the 3rd time. The first time I watched it with another friend who had stage 4 cancer. The second time, my husband and the third time, with a close friend. Each time we finished the doc we ended up talking for hours on end, exploring the depths of what we just saw. Sharing, debating, pondering, and discovering.

I woke up the next morning wanting to unpack what I had heard into my journal, some major truths I really wanted to understand and settle in my soul:

The real challenge of living when you are faced with dying………….

is How HUMAN you can be in the face of something that seduces you away from being human”

“It derives from HOW you died, not of what” ……..this is what will determine how your family will be after you go

“The table you set will be the food that they eat”

“… and how to LOVE somebody as if its not going to last because its not”

“You must die so that there is life. Death feeds life…….death feeds everything you don’t want to leave behind”

“How do you carry the knowledge that you will die with you every day, Living it everyday, as justice, mercy, compassion. This is what dying is.”

“Being grateful for the things that don’t benefit you at all…”

“Grief recognizes that Life must end. Its what you do, its a skill…”

“The twin of Grief is Praise of Life, and loving Life……these two exist as a toast to the living”

Griefwalker Tim Wilson 2008

Jun 5 2023 – Procrastination station

I’m at the beginning of the week to the very last chemo treatment. You’d think I’d be elated, joyous and happy about slowly starting to grow my hair back.. discoloration in my nails growing out, being able to eat sushi and oysters again ha!, not feeling weak sauce all the time, etc. But for the last few weeks, even though I was doing physically well and gaining weight, my mind was an anxious manic squirrel; desperately trying to gather all of the nuts.

You see, even though I thought I did some good work confronting my preconceptions and fear on death and dying, the truth was it still needed a lot of work. The thought of my cancer becoming terminal within the next 5 years then going through a bunch of shitty treatment again before dying was a mammoth on my mind. With it was coupled my frustrations of not seemingly achieving my perceived life’s purposes, it put me back into a downward spiral again. “Unhook Sylvia! Unhook!” – see photo for therapy tactic I guess I will try, but I’m super preoccupied in naming the beast first.

But back to the nuts. When you are still on the chemo road.. you’re preoccupied with surviving it. You’re thinking about fasting, needles, rashes, losing eyebrows, not fainting, et cetera et cetera . But when the end of that road is near.. all of a sudden everything you pushed back in your mind; all of that fear of recurrence now that I’m not getting drugs every few weeks will the cancer start growing again?, the pressures of making the best of the time you have left what did I even do with my life, to achieve, to experience, to wonder before the end, who you even are anymore when you look so strange in the mirror, all of that comes flooding back. Not like my journey is fully over either, I still have radiation coming, and new! hopefully improved hormone therapy and drugs that will banish estrogen in your body and potentially your life spirit as well. (I’m already getting hot flashes now all the time and can’t sleep well. OH, and if your ovaries weren’t killed off by chemo we’ll give you drugs to suppress them as well. You see? Even my writing resembles the nuts.

But why are you complaining Sylvia? The last two cycles were so good and the high intravenous vitamin C infusions you paid for helps your fatigue ALOT. You live in a relative land of luxury and can enjoy every creature comfort. Because I’m hella SCARED. I’m stuck between the Rock of Side effects while I fearfully live out “more time” and the hard place of DEATH.

I’m still working through the audio book of Die Wise, the last chapter I listened to the author describes our inability to let go of life as something that is arrogant. A perpetuation of the fallacy of the right to immortality. He’s right, absolutely right. My desire to cling to this life feeds my fear of losing it. When I’m able to reconcile and realize that death comes for us all and that it’s OKAY to die, I find a fleeting peace to the experimental disharmonious soundtrack of enduring anxiety. And that’s the whole point, why have more time if that whole time you’re just a slave to worry, anxiety, sadness and regret? If you’re paying the price of side effects you might as well make it worth it, and be free of all of that. Being free. It’s still something I’m working on, and what I’ve discovered is that anything that is good and true, takes work. Time and good old hard work. I’ll eventually get there. I hope.

Jul 11 2023 – Gain and Loss

Stretched and thin again
Full of insecurity, frustration, silent agony
The type that crawls under your skin as you feign strength and grace
All that is but now running on fumes
The same fumes poisoning mother Earth
She burns and throws down ping pong-sized ice balls
Is She too feeling that same agony?

Pieces, pieces of me that are lost in every treatment, striving to find them all after every odessy
Reaching out to friends and family
Flying, driving, running, miles away to get lost in a simple innocence
Imagining that childlike laughter

Driving further to experience another friends pursuit in extended kindness
And finally arriving
At that sweet intended haven
A refuge for the mind, body, soul

To be caressed by the sounds of ocean waves and seduced by the moonlit projections on the sea
Perimenopausal symptoms softening, sprouts on your head re-emerging
Are you satiated? With your punctuated adventure and countless hours of car karoke?
As you burn hot
Then run cold

Hot
Cold

Hot…

Cold…. 

To gain
and then to lose

• Fairy god-onco promised that your hair will grow back, yes the tiny chia pet is starting up, I look like a peach
• We’re putting your ovaries to sleep now… monthly, injections to start.. monitor bloodwork for hormonal levels – more poking. OR you can remove your ovaries altogether… yay…
• Will be starting your on Anastrozole.. which blocks your fat cells from creating estrogen. But after we monitor your symptoms on Leuprolide, we’ll inject you today. Side effects may include, itching, pain at the site, hot flushes, decrease in sexual desire and impotence, breast tenderness, increase in bone pain. Please God none of them please…
• Radiation Onco says we need to blast you again in the same area but larger… to catch rogue cancer cells that might have migrated through your lymph nodes 5 weeks daily. Side effects may include redness, increase in lymphedema, Not that please, brachial plexus… aka loss of arm function, heart risk, secondary cancer risk, breathing problems.

I’m accepting it all because thats all I have the strength to do but I’m filled with apprehension and exhaustion. I’m going to roll that treatment dice again in exchange for a few more years. Let’s see how lucky I may or may not be. But I AM TIRED. How much more, how much longer? How many more pieces of me will I find after this? How many more pieces of me can I lose?

July 26 2023 – Hot Girl Summer

I’m about to start radiation and even though I’ve been here before.. I’m filled with a ton more apprehension. Having days of half sleep, waking up in a ball of heaty rage when a hot flash comes on 5, 6, 10 times a day maybe more, I don’t count, I’m already tired. I’m mentally struggling with the reality that these heat turrets might be my new “normal”, and now I hear from my rehab oncology therapist that Lymphedema may be coming. 

What is Lymphedema you say? Well thats when a portion of your body can’t handle the normal sewage plumbing because you had 17 lymph nodes removed. Lymphedema doesn’t operate within nice logical guidelines, its the Wild West buckaroo that rears its head randomly. If you have in cut in the wrong place, if you get too hot, if you have too much pressure on it, and when you have too many lymph nodes removed, this increases your chances of getting it. Once you have it.. its for life, no cure.. kinda like Cancer HA HA. What does this mean for me? That my left arm can swell up.. alot… and with that a host of other unwanted symptomatic hooligans. Another souvenir you never wanted. 

My rehab girl was super nice. She told me to set healthy boundaries, don’t rush the healing process cause all the “nonsense” we put you through, you still have residuals in your body for up to a year. Take a nap when you need to, don’t try to push past the fatigue.. but don’t do nothing either! Stay active… this tricky balance of self care and pushing yourself. But she also made a face when I told her how many nodes I had removed.. “Radiation will probably trigger Lymphedema for you… I don’t want to sugar coat it.” Inside I caught my breath. I had irrationally been very accepting of pretty much everything along this circus ride, but Lymphedema was not one of them. My one positive hold out, I had always said to myself “No, I’m not getting that” my secret deal with the Universe.. not this.. not this. We do a few checks, “Look at both hands, start at the knuckles, can you see all the bumps? Then your wrist bone, is there a little divet there? And now your elbow…. ahh you see how it’s a but puffy there? ” Hearing what she said.. threw that all into the incinerator.  

At this point I’m really in the depths of the deep meaning of the word Journey or Marathon. I feel like Frodo in the hot confusing approach to Mount Doom, hot and exhausted, losing my sense of direction, losing sense of reality at times. Bound to this Evil ring of Cancer, will I be able to let it go? Will it even let go of me?

I’m in this twisted medical obstacle course.. and at each challenge I feel like I leave something behind or pick up something up I never wanted. Where is the end?  God, when does it end?

Jul 28 2023 – Sanity Check

At this point we interrupt my regular scheduled complaining for a moment of levity. Because without moments of life, laughter, and perspective I would have launched off a deep end somewhere. Are all my days emotional turmoil? NO, who the heck can live like that? 

I make a point to seek out friends, work on my fitness, dance, crack jokes when I can. The dragon boat team had a bbq and we ate good food, I taught them to play Kubb who knew chucking wood blocks around would be so much fun, and as the night darkened after a spectacular sunset, we settled around a fire, playing heads up. I had so forgotten how good it was to be outside looking at the beautiful mystery of fire. And as the faint stars started to appear I looked up and felt a simple and pure happiness. Its moments like this I wish I can hold onto forever. 

A Good List: 

• My hair has started growing, I can now pull off a super edgy punk rock, “I choose to buzz off my hair” vs “Cancer took my hair from me” look
• I feel much stronger now, I can do a normal workout without dying, and walk Samwise without dying
• I’m enjoying learning about all the different mindfulness techniques and methods with my therapist, I have tons of reading and homework from her
• I love driving my Mini Cooper SE, feels good to be 100% electric
• I have a new perspective on how to integrate a butt ton more veggies in my cooking from the Hollyhock retreat. www.hollyhock.ca
• I’ve realized, I will never “go back” to normal or “recover” I have become a new version of me… and have license to redefine and discover all that newness. 

Radiation starts next Tuesday. 

Aug 11 2023 – Summer riding

Radiation is flying by, I now have 9 treatments under my belt. In re-reading my old blog I wished I had taken more detailed notes other than “seems great” so that I would have had more to go off of. First week I had a multitude of super itchy attacks.. but I had been slathering on the glaxalbase cream like no body’s business.. I don’t remember this last time.. but then again its been 4 years.

Radiation treatment itself is usually super quick. You walk into the spaceship portal where the atmosphere no longer protects you. Lay down chest bare on the little bed, where the helpful little aliens prod and push you a little to the left, a little to the right, muttering numbers, taping breathhold boxes to your chest. And then they run away, the faint beeping sounds their retreat from the coming onslaught of rays.

There’s a crisp backlit photograph of a sunny summer sky on the ceiling above, complete with tree foliage and … is that a dragonfly up there? … for you to stare at as your mind to races with countless thoughts, while you await your instructions. Some days those thoughts are sparse, some days you’re contemplating how you’re here again, some days you just want to get out right now, other days you’re grooving in your mind to the song playing through the intercom for the day. Careless whisper? Hahah, oldie but goodie.

It always reminds me of driving for some reason. Wind blowing in your before treatment hair, going fast, the sounds of your motor revving, listening to the golden rock hits while the sun sears your skin.

My second week was surprisingly and mercifully mild. The itching had calmed down, and either I’m getting used to the hot flashes are they are actually getting milder, perhaps I’ve mastered the subconscious art of removing my bedsheets in the middle of the night. Either way, I’m sleeping a bit better, naps help, and I still try to be as active as I can until the fatigue catches me. As of now, I’m running fast enough to win, I’m outpacing it. Hopefully when it catches me it won’t get me for down for too long.

Aug 23 2023 – The Birthday

I see you, I see me
Floating above the nonsense
Carried on the wind of song

This is where I’ve always met you

Borne soul to the pitches of encapsulating melody
You tell the story, I’ll sing it
Depths of my sorry turning into a note so loud it screams

But You understand
and in that brief moment I know as well
Rhetoric falls to the background
and somehow I see you
How long has it been? 
Can I even be here? 
I push back my shame so that I can linger just a while longer

The sky reveals itself and I see blue
Blue in its truth and in my tears
As they unravel from me

“Why cant you see you, as I see? 

Large strong wings stretch from my back and I strain to the sky

“You’ve hidden them under your armour” 

And the rain pours from my face

Its my birthday today, and a million and half thoughts have already gone by. I’m outside on my balcony, tea in hand, peaceful guitar medley playing. I’m blessed with a hundred birthday messages ping there goes another one.

Every time I’m able to make it out here I’m blessed. It almost feels like a Hollyhock retreat morning, I can recall the tranquil morning sounds of the sea, the colourful breakfast, and hushed rustles and clinking of the kitchen lodge as you claim your tea.

My sounds this morning are cars, lawn mower and airplane, but oh well. Its offset by my playlist and chilly dewy air. I’m grateful for the rain today, I know the grasses and plants are grateful. Perhaps the squawking magpie is grateful too.

41, what a year, definitely not one I envisioned or planned for. But let’s not go there today.

Today is guitar music as you stare into the grey-blue muted sky. Wistfully looking at your pear tree, laden with a small bounty whispering “I’m almost ready”

What a year

That voice again. I’m in that quiet sort of waiting mode. An internal stance I’ve taken so many times. Silent, almost frozen, like I’m holding my inner emotional breath. Kind of like a warrior; legs braced, eyes alert, armour on. Looking forward, stoic, quiet. Not giving anything away, not showing any pain.

I take this stance and look for signs of a clear sky, waiting for what is battering the soul (conflict, trauma, uncertainty, cancer) to pass.

The force from the storms gather in your chest, your back, your neck, tensing, constricting. I look up, stretch, and let it out in a series of deep exhales. It will be over soon?

A rose’s life can be short. Unfurling quicker than you wanted. Spectacular and fragrant for sheer moments. And when the petals start to fall, are you less beautiful than you were? Those who see you will know that you still are.

That failure is not ugly.

That faltering is a nuance of your journey.

The scars are a mark of the Warrior. Badges of a growing wisdom. And now, let’s go for radiation.

Nov 28 2023 – Picking up the pieces? How about finding them first

It’s been a while now after active treatment has been finished. I wish I would have great news to report, like “oh, everything’s peachy now”, but the time after cancer treatment is probably most accurately described as a side quest of figuring out what everything physical, emotional, and spiritual means again.

You’re not longer being pelted by cosmic rays or Chernobyl cocktails but now your body is in a few months state of : “What the hell was that man?”

And you are no longer who you were at the start of this journey

Don’t get me wrong. Getting outta active treatment is like a get out of jail card. Nothing beats that initial feeling of relief and surge of happiness… what is that feeling? … oh! Hope. When I first felt the initial swells of upbeat-ness my first reaction was to beat that feeling back down. Hey, hope is costly… It might lead to a huge catastrophic well of disappointment later. But I learned in talking to my therapist later that I should welcome the good feelings with the bad. Bathe in it while it’s there because, thats really what living life is; feeling and embracing all, not straddling the comfort zones of repression.

But let me describe the body reactions. A nurse told me that some effects of treatment may be in the body for a year after! YIKES! I already knew of some; after radiation my arm range decreased and it was increasingly more painful to move it around normally. Apparently the radiation may cause the pectoral muscle to tighten, and I still had a few chords hanging on from surgery. The cure? Stretch it more, strength exercises everyday, and really lean into the pain. My scar is still stuck to my chest so more attention needed there as well. Guess my plans of getting a cool, redemptive “I made it” sort of tattoo need to wait.

Ahh, you have class 1 lymphedema, so let’s get some compression sleeves for you, wear it every day and watch your arm for swelling.

Hot flashes? They are milder but continue and wake me multiple times through the night. At least the joint stiffness and toe tingling seemed to have abated.

Ohh and the new addition, I didn’t notice it too much at first but a steady building allergic reaction to something. At first my eyes started itching.. and I thought that was because I was burying my face into Samwise at times for hugs. Then it slowly spread until the crescendo of hot itchy unbearable splotches started showing up on my neck, scalp, arms, and body. On second thought, it might be the anastrozole I’m allergic to. It was the only “new” treatment that I started, and the only thing that kind of made sense. So I’m now on a 2 week detox to see, after which I can choose to restart the drug again… or try another one.

Ohhh drugs…ouuuu treatment. I get one thing, and maybe always a few others come along for the ride.

I’m now at the point where I’m starting to think about returning to work, and the giant transition that will be. Am I anxious, yeah, hell yeah. Does my brain even still work? Can I handle all that screen time again? What does it all even mean? Here we go…

I had completely low moment last night. Samwise sprained his back leg badly, and his shrieks are like daggers into my heart. Layer upon layer of worry, itching, flash, grind down on my being, and I end up in tears at night. I feel a weariness I can’t describe, the culmination of every sorrow and heartbreak rendering me fully resigned. Ready for the permanent silence where it all just becomes quiet. But hey… FEEL it. Feel that emotion because it means you’re alive.

Those are the woes but there have been great moments too. Part of my survival strategy throughout chemo was to plan a celebratory trip to Japan at the end of it all. It would do 2 things:

• One, give me something other than Cancer to focus on
• Two, Give me an end goal to help me get through the rough days.
• Three, give something different for Marc and I to talk about

So during good days, I let my inner OCD planner thrive. I sought and imagined places, sights, tastes to see and experience. Orchestrating a trip of a lifetime (YES IT WAS ALLOWED).

It’s a weird giant messy bag of emotions that comes with the end of treatment. One of them is this SHEER panic to do everything NOW. Travel now! Everywhere and anyhow! Manifest your life purpose now! Get all your hobbies back now! Get back to your previous strength now! Exercise now! See things now! Live your best life now! Get back to NORMAL now!

One, because the next time it happens, you’re stage four. Two, because you’ve just put your whole identity and life on hold for more than a year, and have spent wayyy too much time in bed or on a couch than you’ve ever wanted to.

But as you see new places, things, people, and frantically grab at everything that was stolen from you this year, you always come back to that nagging reality, and I’ve mentioned it before but saying it once doesn’t mean you’ve fully realized it;

That normal is not what it was, when you first started.

That you WILL NEVER BE THE SAME AGAIN

That there is both HUGE loss and gain in this statement.

That time is needed to grieve what has been lost.

That time is needed to be thankful for what you did gain.

That somehow, at some point, you will be okay with the definition of “Normal” and what that actually means for you

2024 – Continuance and opening a can of worms

There’s ALOT to catch up on here. I guess quite a few months have passed.

In that time I was the bestest of squirrels. Trying to stay busy and make Christmas happen again though I felt the opposite of Christmas magic. I was down, low for quite a while… trying to navigate what life would even look or feel like again. What to make of it, what to change, why to continue on. Why?

I was mentally preparing myself for return to work, I had signed up for Wellspring’s class – Return to work, and also a mindfulness one, I was ready to make the efforts to reclaim normalcy. In fact, I was desperate for normalcy, Despite what I wrote in my last blog post. HA, I should take my own advice from time to time.

Trying to get back to a normal routine of waking up earlier, this was hard, which relapsed with periodic allergic spells. Being flattened by fatigue, itchy tearing of the flesh, and wheezy when the spells got me. Stopping, starting, and ruling out potential triggers to those allergies. Was it my facial oils, my supplements? Mold in the house? Samwise??? These are not just the sniffles by the way, when it cycles it hits HARD. And when I realized it was triggering breathing problems… I kicked into high gear. I’m usually fairly patient with our healthcare, after sending multiple messages on AHS connect and calls with the nurse. I called again; I needed an appointment with MY Oncologist NOW, not a student, not another resident… I’d like to see MY actual Oncologist please. What the heck was happening? Aren’t I supposed to be better??

Well that finally did it, I got my appointment in short order. I had started to document the days I was sick, going back to my photos, realizing my allergic reactions may have started way back in the summer… where I had mentioned I was suuuuper itchy. But that didn’t happen the first time I had radiation. WOW, put that in your pipe and smoke it Sherlock. That maybe it started with my itching constantly dry eyes. I scoured through my calendar, pictures, journal notes, looking for my own noted references to “itching”. Yeah… yeah my eyes were dry and crusty in September… then more rashes in Oct, Nov, Dec…. The symptoms seem to cycle, like a ghost period?? Wait, noooooooo, no way. Strangely, my leuprolide injections were also monthly, and only recently switched to 3 months. Is that why I thought it was better? Because it coincided with the time I went off anastrozole?

I sat back in my chair, trying to grapple with it, was it the injection? I subconsciously wished it wasn’t, that was one drug I didn’t want to have a complication with. The oral drugs, yeah there’s replacements, options, 3 in fact. Anastrozole, Exemestane, Letrazole. I have never heard of an alternate Leuprolide. Bah, maybe it wasn’t it. We’ll see what Dr. F has to say.

Jan 23 2024 – Aha Dear Watson

I’ve never been more excited for an Oncologist appointment. They’ll figure it out right? Maybe I can get more drugs… or something for my breathing.

It’s always a long wait in the reception hallway of oncology. It’s actually the same place I wait to see my radiation oncologist, my rehab guy for lymphedema, and my medical oncologist Dr F. I always liked her, we seem to have the same train of thought, and her decisions made sense to me. But back to the wait; always a little awkward, always the youngest one there. When I was doing chemo I was conscious of my bald head, and couldn’t help myself to compare the headscarves in the room. I had more hair today, long enough to pass for a courageous haircut. To the untrained eye, today I was a blonde pixie by choice, and not by unfortunate circumstance.

“Sylvia Leong?” Yes, that’s me. I got up with gusto. I was weighed, ouu need to watch that again then escorted to a room I’ve seen so many times. There, we took my temperature, blood pressure, and blood O2, all very routine. This time, everything was good. I had an older nurse today, as my regular one was on maternity leave. I was glad for her, she seemed kind and experienced, not easily flustered and angry as the last stand in I had.

“So you’ve been having some reactions?” We prattled on about what had been happening, I showed her some pictures of my rashes, and then it was time to wait for the doctor.

Knock Knock

“Yes” I said. “Hi, I’m Dr A. I’m a resident fellow working with Dr F today…..My background is actually surgery….” blah blah. When will I get to see Dr F????! This was my 5th appointment with her and I haven’t seen her in months.

Dr A seems fairly quick on the uptake as I once again rehash my symptoms and whole medical journey this year. I show him the pictures, and share that I don’t think its the current drugs I’m on yadda yadda. He steps out of the room to confer with Dr F.

It’s funny how that works, I can hear a large portion of the mumblings after they close the door. Its like the telephone game (the one with the chord and receiver for you young-ins). The nurse repeats what I say to the doc and briefs them before they come in to ask you the same thing. I can hear Dr F and Dr A go at it behind the door. The ouu’s and ahhs, and maybe’s and what ifs, and “ohhh that’s interesting”. It sounds like work, I mean like easily one of the meetings I would have at work. Perhaps my symptoms are interesting, some sort of case study, I’m a puzzle, patient 1234 that needs to be solved.

Knock Knock

Dr F enters the room. OMG yay!

“Ohh how are you? You look good! How are you hands and feet? Do you feel any tingling?” I tell her that its been a while since I’ve seen her and that my hands and feet are pretty good. “See!” She exclaims to Dr A. “Intermittent fasting, we will discuss.” She turns back to me, “I didn’t destroy you too much with chemo right? Ohhh good. Now these reactions…”

It’s now the 3 of us sleuthing in this room. I say that I don’t think that its exemestane, as one of the options is to try the 3rd oral drug. Apparently a referral to an immunologist may take months so we need to try to figure out whats going on within Dr F’s powers. We all somehow think it could be a reaction to a carrier in the leuprolide drug. They ask my opinion and I say I think it could be possible, a quick glance over to Dr A and he’s nodding in medical agreement. “Well that’s easy!” exclaims Dr F. “We’ll remove your ovaries!” My eyebrows shoot up. EASY FOR YOU TO SAY YOU STILL HAVE YOURS!

“Its alot easier than your breast surgery don’t worry” My eyebrows are frozen in shock. “You didnt want kids did you?” She prompted. I said I thought that I couldn’t because: chemo. That was a whole odyssey of conversations and worms that I had thrown into the vault of I guess it aint happening a looooong time ago. “Welll, sometimes ovaries can come back” she quipped. And with that my vault cracked wiiiide open.

My mind is still reeling as a plan formulates around me. “So what are we doing then? “ I asked. “Stop exemestane for a month and see if the symptoms persist for a month and touch base then?” Yes, and in the meantime I can take as much claritin as I need, we can give you steroids etc etc. The doctors seem pleased and walk out of the room.

I gather my stuff and rush out towards the stairway, I had been stuck in that room for 2 hours and wanted nothing but to get the heck out, completely forgetting my prescriptions. Tears start rolling down my cheeks as I descend down the stairs and grapple with the final loss of what I unknowingly had started to desire in the last few years. Children.

Feb 1 2024 – For Connie

Here

Sitting at the coffee shop you wanted to visit. 
I just got your memorial invitation
What bittersweet timing
.
Celebration
I’m supposed to rejoice at the life you led
And I’m floored, inspired, speechless

But I’m also so very SAD
that you are gone

Are you perfect and whole now? 
Free of suffering? 
With your long black hair flowing 
Down your back again
Joking with the angels
Enjoying haute couture and dining with 
the Divine?

I hope so
But for the moment Grief clouds 
what joy I might have
Because the depths of my being is wrecked

I only wish we had more time
You told me this with tears in your eyes

And I’m so sorry you had to suffer
I’m so sorry you are gone. 
Why am I still here. 

I am 
Sorry

https://mygrief.ca/

https://www.centerforloss.com/

April 11 2024 – Missing You

I’m sitting here, at a coffee shop, trembling still from the breath test that I just took. I’m trying to console myself with a soy latte and sesame seed cookie. Need Energy now.

Normal has still been very elusive for me. It’s a completely new benchmark. Every the task of setting that new level to aspire to has been tough. I debated closing the chapter on this blog because.. you know.. isn’t it all over now? The majors at least, surgery, chemo, radiation, hormone therapy. That’s all they can offer for now. That’s where most well-written cancer books end.

Well.. apparently we’re applying for immunotherapy too on compassionate grounds, because my ki-67 levels tested too low to be covered by AB health. But maybe somewhere out there some billionaire pharmaceutical C-suite god has a shred of empathy for this post-cancer apocalyptic me. Another drug… if I’m lucky, to add to the regimen.

Post malignant me. I have mini sweat turrets – remnants of the hot flashes that continue. I have a semi-constant itchy scalp and right eyelid. The allergies continue. Sometimes if I laugh too hard, a bass string vibrates from the depth of my lung. Normal breathing seems like 80-90% of what it used to be. When I wake up, I hobble around like an 80 yr old for about 10 mins. Waiting for my joints to limber up, my hands are stiff with a touch of almost pain.

Maybe all of this reads horribly, but you know what, I can live with all of that, happily even. ALL my post cancer battle scars. Along with that looong flat one across my chest.

But what I miss the most.

Is Energy.

I miss, being able to “go at it” for 8 hrs a day, and then go do “fun life” in the evenings after. I miss, motivation, that initial gusto to chase after all the things I left about 2 yrs ago. I almost miss being able to look at a screen for more than 7 hours though its absolutely horrible for you. I miss being able to do a 1 hr walk with my dog AND do a 30 min workout in the same day.

I miss not dreading to go to sleep at night because what did I even do in the day? I miss morning optimism.

I went back to work, gradually, only 2 days shorter hours for now. And I forgot how much energy thinking takes. For the most part I remember all of it, the issues, the projects, the software, the strategic roadmap even. What I forgot, was how much energy troubleshooting takes. Where I used to thrive in my old work role. Some days I wonder, I wonder can I do this?

YA ya can.

Maybe in time. Go Slower.

BUT I’m impatient. My 1 million curated plans for the week, month, year, might need to wait. And it kills me that they have to. I’ve been waiting my whole life for something to happen, waiting 1.5 years to get over the hurdles of cancer treatment and after all of this I’m STILL waiting. I’m scared I’ll still be waiting while being swept away by Mr Reaper.

I’m not in critical condition by any stretch physically, which is nice, but I feel the last dregs of my spirit slipping away. Lost in the pressures of my own goals, beat down by the immobility of others. Burnt out with the imaginary consequences of what ifs. Decision paralysis.

I think I’m in trouble.

It’s timely that I meet with my therapist this friday. Maybe this is a good time for a mini breath thing. ⬇️

Apr 22 2024 – The Backpack

Unbeknownst to myself, I had been gathering a subconscious load during treatment.

As I suddenly let go of all my hobbies, goals, aspirations, identities, I threw them into a backpack marked “LATER”. This was the load, one that I very much expected to lift back up again, after treatment.

Once I’m better, I’ll pick it up again.

So as the days, months, year passed, every time I encountered a form of cancer loss, I put it into that backpack. LATER, I’ll get it back, later.

I will get strong again, work out again. I’ll eat better again, I’ll do even more creative graphics, I’ll figure out my ultimate job/role, I’ll find a place where I’ll thrive. I’ll dance again, I’ll live fully again. I’ll go out with my friends again, I’ll move my left arm with no pain again,

Into that backpack.

Every instance, time, tear, every cancellation, disappointment, I stealthily passed from my right to my left (so as to not be detected), and shoved it into that backpack. Why? Because it represented HOPE.

Whatever I couldn’t do at the time, I consoled myself with you’ll do it later; when you get to the end of treatment, when you get your energy back, when you have hair again.

And so, when I got to the perceived end of treatments, I was like LET’S Goooooooo.

While still grappling with symptoms, I said, “Screw it! I’m not waiting anymore! Don’t you see this backpack here?? It’s screaming to be lifted and taken places. To Mount Everest! There is absolutely NO time to waste because don’t you know? My time is precious.”

And so, with my Claritin, Allegra, Benadryl, Blexten, 4000 IU of Vitamin D, Turkey Tail, Intravenous Curcumin, Calcium, Melatonin, Leuprolide and Exemestane, a side quest of gradual return to work program prove you’re still smart ok?, I threw on the backpack and started sprinting.

In my mind’s eye, I would only get stronger, rising strength to strength, conquering loss after loss, systematically reclaiming ALL and I mean ALL that was lost.

Because that would have signified that Cancer did not win. That I had SURVIVED at a pace and level that any overbearing results-orientated tiger mother would have praised.

Something, that even I would have been proud of.

But as I strained with every fibre of my being, pushing, pulling, screaming, trying to stand; I could not even get the thing off the ground.

I saw myself, laying there. Hot, breathless, itchy, my vacant eyes watching the sounds, colours, and textures of life pass me by.

In the moment that I realized, I no longer cared to be a part of a world that kept passing me by; an existence of watching from the outside. I was tired of being tired, was done trying everything, and was done.

How low can valleys go?

I thought I hit the lowest low a few weeks back, but I’ve been in this crevasse for a while.

I have a newer friend of sorts. She’s not all there at first glance sometimes, she seems foolish in the romance department, and her driving skills make me involuntarily clench my fists, but she’s someone who cried with me on more than one occasion, whose sage advice shone so brightly for me I almost thought I saw a halo.

She stared at me intently across the table, and in her accented english, told me that she was watching me from afar, going through my cancer journey. She told me that to be able to write about my experiences, experiencing the trauma first hand, then experiencing it again when putting it on paper, then maybe even a third or fourth time upon revision, was a huge accomplishment in itself.

My gut reaction was to say, “Oh no, its so therapeutic for me to write about it, its really nothing”. But this time I let her words sink into me, deep into my dying fetal spirit. I let those words hold me, and lift me out from the crushing weight of the sum of my cumulative survived expectation. She might have not realized it at the time, how long I was treading water for. How close to the edge I was.

I get obsessed with perfection and expectation more than I should. But it’s the sincerity of raw imperfection of Love, her love, that saved me that day.

Jul 30 2024 – The marathon continues

I’m tired. Beyond tired. Just tired. I heard it somewhere, where I don’t remember anymore. Someone said its at the end of cancer treatment that things are the worst. I heard it, vaguely registered in it my head and thought I understood that statement. I didn’t.

Not until I got there myself. All the big hurdles were finished, surgery, chemo radiation, ongoing hormone therapy. I had paced myself for these, just enough steam to reach that finish line, only to discover the line was pushed out further, and further. Yeah. All the biggies were done, you rang that bell even. Hooray. Now get back to life. Live life to the MAX.

But you’re reeling from shell shock. Now every minor health thing has a price tag. A few days of cold or flu and I’m in the valleys of depression. I’m barely treading water with my multitude of pills, supplements, appointments. Doing everything to ride the line, stay alive, eat right, meditate, be less stressed, exercise, all of that slipping under the increasing weight of work deadlines. I cant explain this depth.

You dont get to see your oncologist much anymore, maybe another fill in doctor or a student. My psychosocial therapist wanted to wrap things up, but didn’t most probably because I had a new drug protocol on the horizon as well as another surgery. (A gamble to fix my allergies by removing my ovaries). Very quickly, the supports fall by the wayside, because you’re done. You’re done formal treatment so out you go. Good luck. We’ll monitor you for new lumps.

Someone asked me “if I’m living life to the MAX these days”. I never replied. In my mind, I went on this lengthy explanation, what would you do? Blow all your money, travel the world, party hardy? And then what? What is your legacy? Do you have money to leave your loved ones, would you have gotten meaning from all that enjoyment? What do you do after that is all done, say like in a month or two. What is there left? Remember, Cancer means dying slowly, so like if you blow it all, how you gonna eat the next month? What if you last another 5 years?

I have no desire to travel if I can’t share it with people I care about. I don’t want to talk if the conversation has no meaning. I dont want to slave if there is nothing left to admire when I’m done. I’m finding the treasures are in the moments I deeply connect with people. The smiles and giggles from my nephews. Feet jokes with my brother and in laws. When I have the energy I try to find things I can make a positive change in. But some days, most days, I’m treading water, and right now I dont know how to swim.

Nov 14 2024 – Distracted Bag Lifting

It has been a whirlwind of bumpy starts, stops, and starts again. I’m now the whirlwind squirrel; picking a nut and taking a bite and throwing one away and picking up another nut, licking that one and chucking that away for the first nut. All the nuts again, in a different way, trying to find that elusive nut, that original golden one that I had before all of this. The perceived normal nut, the one that was me, the one that was free of disease. One of these nuts was the vacation nut. An exotic asian taste, full of adventure, food, a break from abemacciclib and its embarrassing side effects.

You know its a good vacation when you forgot what day it is. After a way too jam packed week and a half, I finally have a moment to write.

A slow vacation this has not been, but it has been a good one. Our first stop was Kyoto, then Naha, Motobu, Fukuoka, Beppu, Yufuin, and now Kurokawa at the Okyakuya onsen. I’m sitting comfortably in a yukata at a Japanese table in a traditional room; tatami mats and all. The futon has been rolled out thoughtfully, and I’m reminiscing the luxurious meal we’ve just had. Basashi. – horse sashimi… not too sure I’ll do that again, not the taste so much as moral qualms. But the rest, sashimi, delicate and careful appetizers, fish, tempura, miso soup and rice, mmm picked veggies.

I went for a dip in the onsen after the meal, completing the women’s circuit of relaxation for today. My favourite was the largest onsen. It was outdoors, I wished I could have seen the trees fully but I guess that would have meant that they could see me fully too. In my nakedness, scarred and tattooed, imperfection in Japanese standards. But in this water, everyone is equal.

I suspended myself on two long bamboo rods, and let the heat cook my sore feet and calves. I embraced the heat ebbing back and forth with the pulses of hot spring water, letting it lift my weight. Forgetting that I didn’t know to swim, I pretended to fly in the suspension of water. It was in this moment I knew that I needed to write again.

I moved to sit in the shallower end, watching the steam gently rise and curl around the yellow gleaming lights. Swirling around the shapes and edges of the rocks who have known the time of lifetimes.

I sat there in full contentment, my mind then wanders to where I have been almost a full year ago. I was also in Japan, apres chemo. My virgin hair was sprouting then, today, I have a cute highlighted bob. Its taken this long to grow mid-cheek. I’ve also put on quite a bit of weight since then, “You need to watch your cholesterol” — my backup oncologist had said.

I have been trying to lift that backpack:

hurdle after hurdle,

exhaust upon exhaust

loss upon loss

flash after flash

ache, after ache

baggy clothing and prosthesis

where is my coffee and tea?

Why am I so tired?

you would never know.

pick out nice clothes

stuff the left side

rouge to my cheeks and muster up the energy to smile.

SMILE

you would never see, you would never guess

what I’ve been through

and now I fool myself

Systematically

Ignore all of the above. LIFT that bag.

I’m the actor now, of fine health.

What symptoms? and RUN, you don’t have much time left!

RUN

Not the same, limping

Don’t look too close. You won’t see it.

RUN.