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What is precision medicine and why does it matter when treating Stage IV breast cancer?

If you’ve already heard of precision medicine, what you’ve read likely fell into one of two camps. One point of view: it’s our ticket to sci fi-style healthcare. On the flipside, it’s an interesting tool, but certainly not the healthcare revolution we’ve been hoping for.

It’s a complicated topic, and we’re just at the very beginning of understanding how precision medicine will change healthcare, and breast cancer treatment in particular. But we do know that the truth isn’t as black and white as Wired’s perspective vs. The Atlantic’s. So, here are four things you need to know about precision medicine, and why it’s especially relevant for metastatic patients.

It’s really about targeted treatments.

The key to precision medicine is data—when doctors can identify exactly what tumour markers are specifically causing someone’s cancer, it’s easier to develop a targeted treatment.

Under our current system, each disease has a “standard of care,” or treatment protocol that is determined by scientific studies and survival stats. (In oncology, each type, stage and grade of the tumor has a standard of care.) There’s a reason medicine works this way—it’s an evidence-based approach where treatments have been studied and proven to work for most people, most of the time. If that first-line treatment doesn’t work for you, there are second- and third-line options that are also based on stats and outcomes.

Precision treatments help make therapy more customized. Doctors can now analyze the genes found in a tumour to look for the mutations that can cause cancer and often prescribe drugs that target cells with that mutation, destroying them and leaving healthy cells alone. Women with stage IV HER2-positive breast cancer, for example, may be prescribed trastuzumab (Herceptin), which binds itself to the HER2 receptors in a tumor cell and blocks them from receiving growth signals, which then slows or even stops the tumor from growing.

When it comes to precision medicine research, breast cancer is one area of healthcare with lots of potential—but it’s still early days.

In the breast cancer world, genetic testing is familiar territory. We already know that women with BRCA1, BRCA2 or PALB2 mutations have a higher risk of developing breast cancer. And targeted treatments, like Herceptin, already exist. But while we’re already pretty far along compared to some other diseases, there’s still far to go. Researchers are currently trying to identify other mutations and, more importantly, the drugs that target them.

Instead, doctors may just need a blood test to determine exactly what medication a person’s cancer will respond to—and what it won’t. This doesn’t mean just fancy new targeted treatments, by the way. A genetic test might reveal that your cancer will respond best to chemotherapy, or a combination of chemo and a targeted drug.

Either way, time is one of a metastatic patient’s most valuable resources, and this approach has the potential to save a lot of time.

Some of the benefits (like progression-free survival and better quality of life) are particularly important for women with metastatic breast cancer.

Precision medicine won’t just improve survival rates for women with metastatic disease. In fact, in the short term, the benefits are likely to be incremental. But those small improvements include an important impact on quality of life, since patients won’t have to try treatments their cancer may or may not respond to—and similarly, won’t have to suffer through side effects for medication that may not.

This might seem like a small victory, but quality of life is particularly important for metastatic patients. They don’t have time to waste—they’re living with a disease that will shorten their lifespans and eventually kill them. But the hope is that targeted therapies can keep their health stable so their focus can stay where it belongs: on spending time with loved ones and their own emotional well-being.

But there’s a serious economic downside to precision medicine, and we have to address it before some women are excluded from the benefits.

Precision drugs are only part of the story, but they’re an important one. Some combination treatments, which combine targeted drugs and chemo, have shown really promising results — one study found pertuzumab (Perjeta), chemotherapy and trastuzumab can extend life by 16 months, a massive amount of time for women with metastatic breast cancer. It’s true: these drugs are expensive. Developing them costs a lot of money, as do the clinical trials that are necessary to get them approved for use in Canada. But to the women with metastatic breast cancer, to whom more time is so valuable, they are also worth the cost.

Up next: we delve into exactly why cancer drugs, from targeted therapies to traditional chemo, are so expensive.


November 17 2009, 12:26 PM

On Friday I had CT scans of pretty much everything but my arms and legs to check the stage of my lumps and bumps as compared to three treatment cycles ago (that’s just over two months ago). We’ll get the results Thursday morning, when I go in for my regular clinic appointment.

Normally a head scan wouldn’t be included but I’ve been having some dizzy spells and frankly they’re freaking me out a bit.Despite my best efforts, the words “brain tumour” crept into my mind like sneaky little spiders leaving clingy cobwebs of fear behind. Reassuringly, my oncologist said that the problem is more likely related to circulation (it mostly happens when I stand up or get out of bed) but since I have a pretty good record of reporting symptoms that turn out to be indicators of disease progression, she’s not messing around. She tagged an “urgent” head scan onto my scheduled CT so we can get all the results at the same time.

And so here I am again, trapped in the hope-fear continuum, as I always am whenever I wait for the results of tests like these. No matter what I’m doing – working or buying groceries, talking or typing, listening or laughing – I can feel the almost magnetic tension between the poles of hope and fear. It feels like walking a tightrope, where any slip can hurl me either into terror or wild optimism.

And this time in particular there’s a lot going on, pulling me in both directions. There is the fear that the scans will reveal tumour growth or new spots, possibly in my (gulp) brain. I’ve also noticed pain at the site of my original tumour, the one long-ago removed, and …is that a little lump under my arm??

But before I spiral down into the murky depths of Fearsville, let’s just shake off the slime of terror and foreboding for a moment and give the other end of the spectrum a chance.  Because there is also the lure of hope: pure and shiny and just as powerful a pull as the gravity of fear. And this time, offsetting the whirlpool suck of fear, I have to say hope’s got a pretty good leg-up. This time, I actually believe I have reason to be hopeful – dizzy spells and phantom tumour pain notwithstanding.

Even though I’m superstitious enough to hesitate to blog it out to the universe for fear of jinxing myself, I’ve decided that I will share why I’m leaning toward hope because I also have a cockamamie theory that other people wishing for it too might help to make it come true.  So, here goes: I can feel that the lumps in my neck are getting smaller! Its not just my imagination – my oncologist has on two occasions made a happy/surprised face and a little “Hm!” sound when examining me in the past few weeks.  (She is not the overly effusive type, so for her, I like to think “hm!” is the equivalent of jumping up and down and high-fiving me.)

Anyway, I’ll know on Thursday. In the meantime I’ll walk the tightrope and try not to go completely mad. Although I confess I’m rubbing my shrunken neck lumps like lucky pennies, and giving my brain and under arm lump 800-pound-gorilla status just by dint of the concentration it requires to not think about them.

Luckily, I had a visit with my amazing cancer shrink yesterday, and he says “What-ifs” are strictly off limits.

No matter how positively you spin a What-if, reasons my amazing cancer shrink, it invites its opposite, thereby opening the door to anxiety.

And nobody wants to live in that house, located, as it is, in the reeking swamp of Fearsville. So I just have to stay with what I know, which, right now, is …nothing. Nothing is pretty hard to hold onto – but even if it’s not as great as good news, it’s still better than bad news.

Holding onto nothing… Oh my, my, my. That’s the thing about cancer: you might beat the disease, but you’ll probably go crazy doing it.

Name: Karen

Age: 27

Occupation: Recruitment Advisor

Age when diagnosed with breast cancer: 27

Breast cancer type: Breast Cancer, Hormone Positive/HER-2 positive

Breast cancer stage: IV, metastasized to bone

Treatment: Currently undergoing 9 months of chemo/adjuvant chemotherapy – then TBD

Tell us a fun fact about yourself that has nothing to do with cancer

I love painting! I don’t consider myself a Picasso by any means, but I have several of my paintings hanging in my apartment

What’s your go-to pick-me-up song?

There are quite a few – I have a specific “chemo vibes” playlist that I have on repeat the day before and the morning of chemo rounds. My favourite song on there is Tom Petty’s “Won’t Back Down”

Currently really digging Bruno Mars “What I Like” as well

How did you discover your breast cancer?

I felt the lump myself, and made an appointment right away. It was initially dismissed as an infection, but when antibiotics didn’t do anything and the lump continued to grow rapidly I went back and went through the ultrasound/mammogram/biopsy process.

What went through your head when you received your diagnosis?

I immediately thought about my family and friends – how was I going to tell them? What did this mean for me? How much of my life was I going to miss out on?

What’s the craziest thing someone said to you after being diagnosed with breast cancer?

“At least it’s breast cancer and not something worse” and also “Well, you’re going to get a new pair of boobs!”

Who or what is/was your biggest source of support throughout your experience with cancer?

My family and friends. I have been absolutely blessed with an amazing group of people in my life who have really rallied around me, especially in times of need.

What is/was the most difficult part of being a young woman with breast cancer?

Dating/relationships. It’s hard enough to navigate the dating scene anyway, let alone when you have a diagnoses like cancer, how do you let someone know? Is it fair to bring them into this situation?

What’s something unexpected you learned about yourself as a result of having breast cancer?

That I’m capable of pushing through what seems like the darkest days and continue to be positive and happy – I’ve learned to appreciate what’s important in life and to be grateful for what I do have.

In one sentence, what words of wisdom would you pass on to another young woman who has just been diagnosed with breast cancer?

The diagnosis makes it feel like the world is crashing down all around you, and you don’t know how you’ll ever make it out of the rubble – but fight, fight hard one day at a time. Pull your army in close, educate, and advocate for yourself. Sometimes it can feel like the diagnosis has taken over, and you’re just a shadow of your old self, but don’t let that happen – you’re still YOU!


For more #YWMBC profiles click here.

On March 31, 2017 I attended the Advocacy for Metastatic Breast Cancer (MBC) workshop held by Rethink Breast Cancer.

The room was full of energy, laughs, long sighs, and nodding heads – without knowing no one would ever think all of these women share one thing in common – they had all been diagnosed with a terminal illness – MBC.  It was a day where everyone understood the struggle – the advancements in care and the lags, being heard and ignored, the good and bad days.

Judith Saunders a patient advocate presented on Advocating to Improve the Lives of Women with MBC and oncologist Dr. Rayson, Medical Oncologist from Halifax presented on From the Outside Looking In – Reflections of a Medical Oncologist still learning about MBC.

The day focused around advocacy which lit a fire inside me like no other – that something needs to be done and it needed to be done now. MBC can no longer be ignored – it needs attention, research, funding and ultimately a cure.

The workshop was small and intimate which allowed for lots of sharing – in some way or another I could relate to everything that was being shared – whether it was about the specific needs of MBC patients, how patient values need to be woven into care, ways to motivate MBC specific research, and living well with MBC. Being newly diagnosed with MBC this was all new to me, but I knew I wanted to know more and get more involved. I had so many ideas percolating in my head for days after the workshop; it was a great introduction to the importance of this work. The one message that I took away with me was the importance of having our voices heard by EDUCATING, DEMONSTRATING and ADVOCATING for MBC.



For ways to get involved with Rethink’s Access to Treatment campaigns click HERE.

Name: Adriana Capozzi

Age: 37

Occupation: Hairstylist… currently a stay at home mom of three.

Age when diagnosed with breast cancer: 35 Breast cancer type: er- pr- her2+

Breast cancer stage: Originally stage 3, Now Stage 4 Metastatic breast cancer to my brain.

Treatment: I had day surgery to have a port put into my chest. I had 8 rounds of Chemo every second week. During my last 4, I began Herceptin every 3 weeks for 12 months. I had a bi lateral Mastectomy, followed by 25 rounds of radiation. I have had stereotactic radiation to my brain – a Crainotomy followed by targeted brain radiation.

Tell us a fun fact about yourself that has nothing to do with cancer

I LOVE to travel! Before I was married with children I used to travel a few times a year. I always traveled alone, I loved the excitement I felt entering the airport, not knowing who I would meet or where I would stay. I took a year off and traveled around Southeast Asia and Australia alone. I bought a one way ticket and that’s it! It was an amazing year of finding myself, and stepping out of my comfort zone.

What’s your go-to pick-me-up song?

Right now I’m liking Alessia Cara… Scars to your beautiful is currently a strength song for me. I also love  Lost Boys by Ruth B.

How did you discover your breast Cancer?

I found a lump one day while getting dressed. I remember my heart sinking and i instantly knew it wasn’t right. I went immediately to the drs and was sent for an ultrasound. They told me it wasn’t breast cancer. Three months later I had another follow up and found out the lump was cancer. What went through your head when you received your diagnosis? When they gave me the news, I already knew it in my heart. I remember walking out of the ultra sound and the technicians giving me the sad look. I was devastated. I remember thinking it had to be wrong. I was pregnant with twins and I was terrified what it all meant.

What’s the craziest thing someone said to you after being diagnosed with breast cancer?

Oh gosh, there are a few! People often say to me, “ but you don’t look sick.” “ at least you get a boob job.’’ “ but your gaining weight?”

Who or what is/was your biggest source of support throughout your experience with cancer?

Support is something I have struggled with. I have a wonderful husband and wonderful children, that have always been there for me and by my side, but I have to say I have found the most support from women in my situation all around the world ( online fb groups) They understand my feelings, and can always give me some insight to what worked for them.

What is/was the most difficult part of being a young woman with breast cancer?

For me, being metastatic, I find it extremely hard fitting in. I don’t look sick, but I am. I have three young children ( 3,4,7) and I have an extremely hard time living in the future. Hearing everyone around me plan for the year ahead is hard. I’m learning to live in the now, and enjoy today.


What’s something unexpected you learned about yourself as a result of having breast cancer?

I am a lot stronger mentally than I ever thought. Sometimes I wonder how I’m not siting in bed crying all day. Its been a long, hard two years. My mind is powerful, and I have learnt how to embrace the sad, and then throw it away and move forward. It took me some time but I am in a great place now.

In one sentence, what words of wisdom would you pass on to another young woman who has just been diagnosed with breast cancer?

Live in Today, worrying about tomorrow won’t change anything, cry when you feel sad, give yourself that, but don’t let cancer take away who you are, and all the happiness around you.


For more #YWMBC profiles click here.

August 26, 2009 3:35pm

Yesterday was one of those great days: In the afternoon I met my niece, who is perfect and amazing – just a miracle of life wrapped up like the world’s most beautiful burrito in my arms – and in the evening I ate lobster with a friend who always makes me laugh and inspires me, having herself recently kicked cancer’s a**.  Needless to say I slept soundly.  Smugly, even.

Alas, this morning I came screeching back into cold hard reality at full-speed – right back into the routine that somehow never becomes routine:

  • 9 a.m. needle to the port in my chest – check
  • Extraction of 6 colour-coded vials of blood – check
  • ECG – check
  • IV fluids & drugs for about 2 hours – check
  • Review bloodwork results with my nurse: all counts low, especially platelets. Am instructed to rest as much as possible, and to avoid getting any deep cuts or gashes. Cancel my sword-fighting plans this weekend – uh, check

This evening I’m scheduled for my first CT scan since beginning the clinical trial. They’ll scan everything from head to pelvis, looking for any sign of further metastasis (please, no more) and of course, measuring the growth of the ol’ neck lumps (please, no more than 20%).

I’ve already choked back half the gigantic bucket of nasty chalk-juice, which, by the way, some jerk had the audacity to brand “E-Z CAT” – probably a relative of the jerk who came up with branding Fox News “fair and balanced.”  Now I shall proceed to eat everything in sight before fasting begins.  Then I’ll nap, if I can possibly quiet my mind, and later my husband will take me back to the hospital for the freaky sci-fi space capsule scan.

And then?

Well, then we just wait. Probably until Monday. We wait and try to enjoy our weekend as much as possible, hopefully avoiding “deep cuts and gashes” or any manner of flesh-wound, and also trying not to think too much about the results.  This of course is like trying not to breathe too much.

I really want to stay positive and only think of good things (my family, my new niece, lobster dinners) but the truth is I’m terrified.  Still, if there is something to know, I’d rather know it.  Can’t fight it if you don’t know it’s there, right?  And maybe there just won’t be any surprises.  Maybe the test drug is working, in spite of seemingly enlarged neck lumps, which yes I have stopped touching all the time.  Mostly.

Anyway, on with the dragon hunt.  Again.

August 6, 2009 10:35pm

My neck lumps are growing.  Or at least the one on the side is.  There are two, one deep in the neck right around the scar where they biopsied the original lump, and another one poking out at the side. They used to be lymph nodes and are now tumours, and frankly they scare the hell out of me so I touch them all the time to see what they’re up to.  Evidently they’re up to no good.

 Problem is, yesterday I found out that if my tumours grow by more than 20% I’m off the clinical trial. Finis. Apparently 20% growth means that my body is not responding to the study drug and in a clinical trial if your body isn’t responding, it’s sayonara study subject, next please.

 When I found out about the 20% growth cap, the internal panic-valve immediately opened and the inner freak-out commenced.  Off the study?  No more tumour-targeted miracle drugs to precipitate cellular suicide? No more sci-fi magic potion??  It would be too overwhelming a disappointment to contemplate, or even to be able to call a “disappointment” without grossly understating what it would do to me psychologically.

 I know there are other options, like chemo, radiation and possibly even surgery –  all of which I have previously had, and in spite of which my cancer metastasized.  The bottom line is that I’ve put so much faith in this study and been so excited to be a test subject for this new generation of cancer drugs, that going back to more conventional treatments might feel a little like trading smart bombs for mustard gas.  Whether that’s a warped perception (wouldn’t be my first) borne of mistrust and frustration that the cancer metastasized is a question for another day.  Today I’m about 20% more concerned with just staying on this study because, whatever the treatment is, I just don’t want to be declared “unresponsive” again.  It terrifies me.

 So these bumps have got to stop growing — or, preferably, start shrinking. They just have to. Any suggestions?  I’ll do anything.  Rub voodoo salves on them, drink yak urine, hold crystals up to my neck, whatever, I’m all ears.  And neck bumps.

We all have different ways of doing things, so if you are interested, keep reading to see what I try to do everyday that makes me feel better physically and emotionally while facing a pretty tricky and life threatening disease.

  7:30 AM 


Morning Cocktail

My morning starts with a shot of lemon and ginger – no vodka 🙂 They (whoever they are) believe there are so many health benefits by drinking a glass of lemon water first thing in the morning – alkalinizes and cleanses your liver, so I say why not concentrate it and just make it a full on shot with freshly squeezed lemon juice.  I also add freshly grated ginger, because they say that is really good for you as well.

  8:00 AM 


Tea Time

Next I drink  a cup of dandelion root tea.  They say this actually kills cancer cells.  It doesn’t taste horrible, so I say why not?!  Again, I’m going to refer to the never seen group of ‘they’, so feel free to look this stuff up yourself and see if this works for you.

These first things are all happening while I get my son’s breakfast ready – a delicious warm waffle with maple syrup and to make me feel like I am offering him a healthy meal, I also make sure he eats a full fruit.

  10:00 AM 


Rebounding (not the relationship kind)

After walking him to school, I walk back home (that counts as some exercise, correct?) and rebound on a small trampoline for 15 minutes, while watching the Food Network or Blue Jays in 30.  Rebounding apparently gets your lymph system moving.  This system doesn’t have a pump like our circulatory system does so we need to do some sort of exercise to get your lymph moving and therefore improving your immune system.  They say rebounding is one of the best ways to do this.

  10:30 AM 


A Yoga Quickie

Next I do some very simple yoga for about 10 – 15.  I find it relaxing and easily stretches me out.  My favorite pose is Shavasana – you know the one where you get to just lie there 😉

  11:00 AM 


Dry brushing (not my teeth or hair)

After that, I dry brush (look up on youtube how to do this).  This is another great way to get your lymph system moving – plus your skin becomes so soft!

  11:30 AM


Sauna treatment

I’m very lucky to have a near infrared sauna in my house, so I hop in there for 20 minutes.  They say these rays penetrate your skin somewhat and can kill cancer cells.  As someone who is always cold, I just love going in there to warm up, but after 20 minutes, I am drenching in sweat!  Thank goodness I don’t have much hair (thank you chemo) or my head would melt!!

After that, I obviously shower – nothing cancer related to this, just trying to practice proper hygiene 🙂

  12:00 PM


#ChemoMonday(not to be confused with #MotivationMonday, #MusicMonday or #MossMonday)

If it is a Monday I then head to the hospital for blood work and if all is good, I get my chemo.  I get it every week for three week and then I get an off week.  I have been on this chemo for almost a year and for those of us with metastatic breast cancer, we stay on a treatment as long as it is working.  While we continue to live on this Earth, we are never done with treatment.

  3:00 PM



In the afternoon, I go and grab a green juice from my local Raw restaurant. It has kale, celery. cucumber, lemon, parsley, and romaine lettuce.  I have acquired a taste for this, as I’m sure many of you are reading this and thinking “how can you drink that?!”  Actually if you get a lot of lemon in it, it is actually tasty!

  3:15 PM


More meds…

Oh yes – I can’t forget all the pills I take throughout the day – some are from my oncologist including calcium and vitamin D and a bunch of others from my naturopath.  I keep them both informed on what I am taking to make sure no interactions.

  3:30 (and 2-4-7)



It is now time to pick up my son, either take him home, to swimming or piano lessons.  Usually piano and swimming involves some sort of protest, but I can’t give in even though many times I also want to just go home and turn the TV on – even if it means watching Bubble Guppies or Alvin and the Chipmunks.

Then it is your typical evening as a parent to a 4 year old: make and eat dinner, a little time for play, and then get ready for bed (bath, brush teeth, put PJs on, which surprisingly takes a long time when you have a boy who likes to run up and down the hall in his birthday suit, read story and then my son, who is a diva, likes his back and head scratched followed by his hands rubbed.  I actually love this moment with him and just feel calm and at peace for those last 10 minutes of his day.

  10:00 PM


Bedtime Routine

Once I say good night to him, I may tidy up or I may just say eff it and sit on the couch.  But my day is still not done – I take an injection of mistletoe.  This is subscribed by naturopath and apparently improves your immune system.

I then take cannabis oil.  I know controversial, but this helps me sleep and may have anti-cancer properties, so again, why not!

Then good night!  I turn on my cancer killing guided imagery and somewhere in between the 20 minute recording, I fall asleep 🙂

I have to be honest, I don’t do all of this every day, as I get sick of doing these things. I may get in a slump for a few days, but then I get back in the groove.  This may not be for everyone or anyone at all, but it makes me feel better and I think even if none of this stuff is working, if I feel better mentally, it just means I am in a better place for  my husband and son for as along as I am here on this Earth.  Remember we aren’t stamped with an expiration date like a carton of milk, so I say, why not get myself into a position where I feel as good as I can for as long as I can.

-Michelle Riccio

You can hear more from Michelle on her blog here or watch her video on metastatic cancer here.

Imagine being 36 and being told you have breast cancer. It has already moved out of the breast and started spreading through your bones. When you are first diagnosed with any kind of disease, the first thing that happens is information overload. You’re alone, scared, and overwhelmed by all of the new information you’re being given because there is too much of everything coming at you at once.

It’s terminal but you haven’t been told this yet. It seems the only thing the doctors want to discuss with you at this point is what you want to happen with your end of life care.

Do you want to be resuscitated if you go into cardiac arrest? Do you want us to do CPR and chest compressions? Do you want us to defibrillate you and shock your heart? Do you want to be put on life support if it is needed? Do you want to be DNR and for us to just let you go so that you can pass away? What exactly do you want us to do? At this point, no one has told you exactly how bad the cancer is or what your prognosis is for survival. They don’t even tell you it was Stage IV in the beginning. They told you they were still trying to stage the cancer and you don’t really have any other information about your disease. All you know right now is pain. How do you make any of these decisions when you don’t even know you are dying?

It’s the end of January 2015 and I’ve finally been transferred to the Cross Cancer Institute to start my chemo treatment. The resident doctor shows up to my room the first night I’m there to check me over and prescribe my drugs for the evening. One of the first things he wants to talk about is my end of life care. [pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]I’m high, alone, and scared because at this point I’m not really certain what is going on and it seems like yet again all the Dr wants to do is discuss what I want to happen right before I die.[/pullquote]

All I can think is that this Dr thinks I’m going to die in my sleep and I’m not going to make it until morning. I’m so afraid to sleep because I fear that every time I close my eyes it will be the last time and there is so much stuff I’ve left undone or unsaid in my life.

I’ve learned through these experiences that some stuff needs to be dealt with immediately and others can be put off for a later date. It’s been 18 months since my diagnosis and the cancer has spread into my brain and my last bone scan is showing that the cancer in my bones may be starting to become active again. If this is the case, the cancer could start to spread to the other organs soon and I’ve got some major decisions to make about my Personal Directive and Living Will. I’ve had a chance to think about things and talk to my family doctor about the realities of my health and medical condition. I’ve been able to make informed decisions about what I think would be best if it all comes down to making these decisions. We were able to have a good honest discussion about what my current condition is and what are some of the possibilities I can expect at the end if I do go into cardiac arrest or need to think about life support. I made some decisions about my end of life care last year but to be honest I’ve been procrastinating making anymore of these decisions because they are so final.

I have for the most part accepted that I’m dying but completing these documents makes death a reality for me.

What are the first thoughts that go through your head after you’ve been told you are dying? It certainly isn’t how you are going to pick the person that may end up being the most important person in your life.

Just to clarify, I’m 37 years old, I’m single and I live alone with my lovely cat Aurora. I have no spouse that can make these decisions for me so I need to choose another family member to be my next of kin. It will be either my mother or my brother. I know it’s going to be a hard decision for me to pick one of them but it’s a very important decision and I need to choose wisely. I have to take my best interests into account as well as the best interests of the person I choose. [pullquote align=”left” cite=”” link=”” color=”” class=”” size=””]They have to be able to live with any decision that they make when it comes to the end of my life and that decision will ultimately result in my death.[/pullquote]

My mother had to make end of life decisions with her sister in 2007 when her mother, my grandmother, was at the end of her life and died. I know to this day my mom struggles with the decision that they made and has a hard time forgiving herself. Her best friend and sister was diagnosed with liver cancer in 2013 and ended up dying on my birthday in December 2013. My father was diagnosed with Chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL) in October of 2014. He has since been diagnosed with congestive heart failure.

I was diagnosed with my cancer a few months later in January 2015. My mom is still struggling with the grief for her sister and hasn’t had a chance to properly grieve her because she has had to be so involved in my treatment and care. She already has a lot going on in her life without potentially having to put this on her as well.

A parent isn’t supposed to outlive their children and I don’t know if she would be able to let me go and be able to live with her decision even knowing that it would be the best for me in the end and it is ultimately what I would have wanted.

My brother is the other person that I trust to make my end of life decisions. I trust that any decision he makes would be what we’ve discussed and what I want to happen. We can discuss and prepare as much as we can for what might happen at the end of my life but there is only so much a person can predict.

James is 39 and with him being the same age, I know that if he has to make a decision about something that we haven’t had a chance to discuss that he would be able to make an educated decision based on what he would want to happen to him and the quality of life he’d want right now. I know that he would be able to follow through with my end of life plans but like my mother I don’t want him to have to live the rest of his life knowing that he might have made the decision to let his little sister die.[/pullquote]

I decided last year that he was the best choice and would be my next of kin but it was and continues to be a hard decision.

I struggle all the time knowing that if it does come down to it in the end, he’ll have to live with whatever happens and I truly don’t know if I want that but I really don’t have any other options because someone has to be there to support me and make decisions about my life if I’m not able to.

All said and done, I don’t know what the end of my life will be like. I could very well just pass away in my sleep and no decisions will have to be made by my family. I don’t know how bad I’ll be or what my state of mind will be.[pullquote align=”left” cite=”” link=”” color=”” class=”” size=””] I need to be realistic and take all things into consideration so that in the end the decisions about my death is a little easier on me and my family. [/pullquote]

All I want my person to have to do is act on my wishes and hopefully it will ease the burden on them knowing that it was what I wanted in the end and this person will become the most important person in my life.

Originally published July 21st, 2015 here.

Cathy was 37 when she was diagnosed with metastatic cancer in 2015 just after completing her Master’s Degree. She is chronicling her journey on her blog Is My Cancer Affecting your Ears?  

July 22, 2009 7:08 PM

Since my first day on the clinical study was a long one, so shall be this post: 

  • Arrive at hospital 10 am (very civilized)
  • Go to blood lab and have seven vials of blood extracted. Lab technician sings He Ain’t Heavy He’s my Brother (“The road is looooong….”) I think this is perfect. Have been humming it all day.
  • Go up to top floor of hospital and am welcomed, weighed & moved into my room: window view East, wireless connection from my bed, very nice accommodations, service excellent.  (Americans have no idea what they’re missing.)
  • Clinical trial nurse (her name is Naz) goes over some questions with me, I answer hers, she answers mine. She is not rushing me, she explains everything.
  • Oncologist (her name is Dr. Elser) comes to give me a physical exam & ask/answer more questions. Again, everything is explained, nothing is rushed.  I like these women.
  • I go for a chest x-ray because I have a little cough (this clinical study stuff is a hypochondriac’s dream!)
  • Naz hooks up my ECG leads and proceeds to do 4 or 5 ECGs, about 10 minutes apart. All are normal. This is our baseline.
  • I eat some hospital food (the low point of my day)
  • Naz sets up an IV in my arm for the administration of flushes & drugs (Panobinostat, followed by Herceptin.)
  • We are GO for drugs.
  • Naz accesses my port to take blood samples. There are seven (or eight?) vials to be filled with my blood today. This is after the seven vials taken this morning.(No wonder I dreamt of vampires last night. Specifically, of a really glamourous, wealthy vampire couple in their fifties, kind of like that couple in the old TV show Hart to Hart, except slightly less goofy and with much darker pastimes.)
  • Friends Michelle and Angelique arrive bearing my favourite chips, trashy magazines, candy, novels by my favourite writer, little French cakes, Thai food, tidbits of gossip and lots of really good energy (the high point of my day)
  • Friend Carol (who recently completed participation in a clinical study herself) drops by to visit, bringing yet more gloriously trashy magazines!
  • Naz pops in periodically throughout this little salon of visitors to switch IV bags and make sure I’m feeling ok. (I am laughing my head off and eating treats, clearly feeling ok.  Maybe she wants to make sure I’m not overdoing it.  Or that I don’t secretly want these people to leave. I feel that Naz would make it happen if I gave her the signal: people would be briskly and professionally ushered out the door and into the elevator before they knew what was happening. I am growing very attached to Naz.)
  • My IV is finished.
  • As my friends take their leave I start to feel dizzy. Crashing from candy-and-cake-induced sugar high? Abject sorrow at their departure?  No: side effect of study drug. 
  • Naz is all over my blood pressure, repeatedly checking it, notifying my oncologist, and hooking me back up to the IV with a bag of saline.
  • Dizziness abates, blood pressure normalizes.
  • Blood tests & ECGs resume, and will continue hourly until 10:20 pm.
  • I blog.
  • Uh oh blood pressure down again. More IV fluids. I am SO HYDRATED!
  • I blog.
  • Blood pressure levels out.
  • My husband is coming soon, bringing a supper prepared by our dear friends who have a fantastic gourmet food shop and catering business.  These are good people to know at any time, but given that powdered mash potatoes and suspicious-looking meatloaf just landed on my table, I’m especially grateful to them right now. 

After supper I want my husband to climb into this bed beside me and read for a while. Even though we frequently battle over the far more expansive real estate of our bed at home, there’s something nice about someone being squished up beside you in a hospital bed.  As long as it’s someone you love. Not just a random orderly. Or, god forbid, another patient.

Dashing husband has arrived, bearing outrageously delicous-smelling food!  Double hooray!!