Can You Repeat That Please?

When someone tells you that you have cancer, but the explanation stops there, it can cause a whole slew of craziness inside of you. On February 7th when the Doctor told me that my lump came back cancerous, my mind went wild – what is it? Has it spread? How bad is it? Did I find it late or early? WHY DID I LEAVE IT FOR A MONTH!?

Those first two and a half weeks were awful, agonizing. Constantly wondering what the hell is going on, thinking that every symptom you feel is the cancer spreading. I’m clearly no doctor (not even a self-proclaimed one) so I don’t know what a swollen or partly swollen lymph node feels like. I kept feeling them and trying to find them (which thinking back, that should have been a sign that they were fine – the fact that I couldn’t even find them). Then the stress. You don’t even realize you’re stressing, but your body sure does. My back was aching all of a sudden, non-stop headaches. You start to think you’re getting sicker by the minute, when actually you’re just under a shit load of stress. It really hit me when I thought about how two days prior I had done a bad ass cycle class and was feeling great, and then 3 days later I’m convincing myself I have full body cancer – ridiculous! It’s almost laughable. But this is what my mind was doing to me, completely torturous.

I couldn’t really say the word “Cancer” for the first while. It was too difficult to say it in relation to myself. Instead I just kept saying “my situation”, or “the C word”, or just avoiding it entirely. Saying things out loud has a powerful effect and makes things all that much more real. Saying it also caused massive confusion in my mind because I felt, looked, and continued to just be myself, yet I now had Breast Cancer – what!? No way, impossible, this makes no sense.

That first day I spent with Mark, who left work to come and meet me at home (our dismissed “game plan” we made if the news was bad – well it was, so game plan Z came to action) and also my sweet sister, RuthAnne, who once hearing the bad news jumped in her car and drove down to Toronto to be with me. That day was a complete daze. It occurred to me that I needed to tell people, so I called who I thought should know first and once I had made about 5 phone calls, with 5 episodes of crying, and 5 times of having to say “Breast Cancer”, I was SPENT. Crying is absolutely the worst. Once you start, you can’t stop, and then when you finally can stop you feel exhausted!! And headaches galore. That certainly didn’t do me any favours that day. Even still, Mark and RuthAnne made the day the best it could be. We started a 1000 piece puzzle and ate some great food. I remember sitting on the couch though and feeling no sense of motivation to participate, talk, smile, nothing. It got me worried that maybe this feeling of sadness was my new reality, which scared me. Am I going to lose myself in this? Am I going to lose the love of life I once had? Is everything going to now need so much effort – even to have fun? That was a sad day.

The identification of being a “Patient”

I thank all of my lucky stars that one of my best friend’s sister works at Princess Margaret Hospital in the Breast Cancer centre and was able to get in touch with me in the first 12 hours of my diagnosis. Of all places she was in the Middle East, travelling for work, but regardless she was calling and emailing the hospital to set me up with an appointment ASAP – incredible right?! She’s an angel. Because of her, I had an appointment with the one of the best surgeons at PMH the very next day, within 24 hours of finding out. Not only that, but I was immediately set up with a team of professionals who I could call and direct questions at. If you can believe it, without her amazing help, I wouldn’t have had my first appointment until an entire week later - ?! Torture.

One of the hardest parts I’ve experienced so far is just having to be a “patient”. Having to be the one that they call out the name for or put a hospital wrist band on. I’m the one who has to put on the ugly (and very large?!) hospital gowns and be the odd one out while I sit next to my boyfriend while he’s fully dressed. I’m also the one that all the information is directed at. How did I get on this side of the table??

One of the things I’ve learned from Deanna’s experience is the importance of listening to any and all information from the Doctors and to pay close attention in the sessions, because getting the chance to speak with them and ask your questions isn’t something you can have at any time you wish. For this reason I made sure I stayed calm and collected and avoided getting emotional during the appointments, taking in everything they said and making sure to jump in whenever they went too fast or needed them to repeat or explain anything. I can’t tell you how many times I said “Can you repeat that please?”, or “so if I’m understanding this correctly, you mean [insert the most English explanation possible]?”.

Don’t try to be the hero and pretend you understand what they’re saying. Always have the courage to cut them off and ask for more information or further explanation. This is the Doctors and nurses bread and butter, but that doesn’t mean it’s yours! Take the time to understand what they’re telling you and also take the time to ask good questions. Sometimes I’d ask a question and I’d get back the answer “Great question, I don’t know if I’ve gotten that one before”. Sometimes (and no offence whatsoever to the care team), I’d ask a question and I’d get back “oh yes, thanks for asking, you’ll need to know that…..”. You can’t get frustrated at them – yes, this is their job, but just like any one of us, we make mistakes and we aren’t perfect! This is a team effort (i.e. you are part of the team) and that’s why you need to be an advocate for yourself and ask the questions, and have things be triple clarified. This is your life!!! Not theirs. You also need to be the consolidator of the information. You’re going to be talking to so many professionals, but you can’t just assume that they’re all talking to each other. Be prepared, have your folders, note book, and pre-written questions, and if you think that some information from one health care professional is worth saying to another – do it! What harm can that have? The last thing you want is to wish you had done or said something when you had the chance. I had already lost 30 days, I wasn’t about to lose any more time!

Process of Diagnosis

First and foremost (and this is no surprise to anyone) – Google is NOT your friend. Coming from a chronic hypochondriac, everything you find on Google needs to be taken with the largest grain of salt. What you’re finding is a mushed up mixture of people’s opinions, incorrect facts, the worst of the worst, you name it. What are you hoping to get out of it anyways? All you’re going to do is 1) confuse yourself and 2) give yourself a heart attack by what you’re going to find. The stress just isn’t worth it. Your spirits are hanging on by a thread at this point, anything could extinguish them. When you’re spirits are gone, you end up in this dark hole of misery – it’s a nasty place. So do yourself a favour and forget Google!

Thanks to all of the funding and research done for Breast Cancer, there is so much detail involved in the diagnosis stage. The only downside though is that means there are A LOT of tests. The first step is the biopsy which takes a sample of the tumour and tests for what they call “Receptors”. These receptors are two Hormones: estrogen and progesterone, as well as a gene protein called HER2. The hormone receptors show whether the tumour is growing off of your hormones, and the gene protein, HER2, tests the duplication rate of the cells. If you are triple negative, that is considered the most aggressive kind because it means something else is driving the cancer, and the only treatment is surgery and Chemotherapy. If you are hormone receptor positive then it provides another opportunity of treatment, hormone therapy. If you are HER2 positive, then there is also additional treatment available, although that version can also be more aggressive.

I had the MRI on February 14th at 8pm, happy Valentine’s Day. The guy on the phone who booked it said “are you OK with this time? Do you have plans that night?”……umm, no? Imagine I went back with “yes, I have plans that I can’t miss because the only time to celebrate love is on February 14th, so can you let me know the next available time for my life saving test?”. I had a biopsy on my birthday….I’m over it. MRI’s are a very strange experience. I won’t get into it, but essentially you have to lay still for upwards of 30-40 minutes (and not in a comfortable position). For anyone who has to have one, just try to take deep breaths and let your mind wonder to kill the time, despite the sound deafening beeping. Fun stuff.

Once all the tests results were back, my diagnosis was Hormone Receptor positive with very strong levels of Estrogen and moderately strong levels of Progesterone. I was HER2 negative (big relief). It also appeared to not have travelled outside my breast, so Lymph nodes showed up clear in the MRI (YAY! – this was a nice victory). I was considered Stage II, as the size of my lump was under 3cm. Women under 30 years of age generally have much larger tumours. This is because 1) they are detected late because why would a women under 30 consider that she’s has Breast Cancer? and 2) younger women have much higher levels of hormones than older women, so the tumours tend to grow fast. For this reason, younger women tend to be treated with chemotherapy right away, prior to surgery, as they tend to be either triple negative receptor test, and/or the tumour can be upwards of 5-7cm in size. Up until my test results had come out, chemo ASAP was the messaging I had received – so you can imagine my head was SPINNING. Within 5 days of my diagnosis I was already having discussions about fertility preservation....(I'll discuss that in a later post).

Thankfully, I had caught the lump relatively early (although it never seems to be early enough). Because of this though, the Doctors decided the best route of action was to do surgery first. What a wave of relief! The day I was told this was the same day I was meeting with the chemo doctor and had I painfully put a list together of all my questions and concerns regarding chemotherapy – a conversation I was not ready to have. It was a great feeling to close the book and put those thoughts on hold for a while, not to mention have more time to mentally prepare for that step. In this process so far, I’ve caught on that there are going to be mini victories, and it’s totally worth celebrating them! You can bet that I had a nice class of wine that night.

The Light Came Back

After the news, I gained a whole new wave of energy. Those two agonizing weeks were behind me and I felt somewhat back to myself. Such a great feeling, it was like a huge weight lifted off my shoulders. I got back to my exercising and did multiple cycle classes along with yoga and Barry’s Bootcamp (death!). I can’t tell you how strange it was to be in the classes and have to remind myself that I, Diana Fraser, have Breast Cancer. Huh? But wait, I’m here killing it in this class – maybe even better than half the people in this room. It occurred to me that in those classes, nobody would have ever guessed that I was going through this – but what also came to me was….if I’m here, then how many other people are disguised like me and in the same struggle. It gives you a new perspective of how true it is that you never know what people are going through. Every day empathy is such an important thing!!

My first yoga class I did after the news was incredibly emotional. The instructor offered the perfect class, exactly the movement and poses that I needed, but she also offered such amazing words at the end. She spoke about “finding your stillness, and let all of your thoughts and worries go”, I’ve heard the words many times before but I never needed them as much as I did in that moment. I cried at the end of the class while doing the final stretches and leading into shavasana. It was a really emotional moment for me. She also said “Thank yourself for coming today” – that, I most certainly did.

After the class, I took a trip to Lululemon. I needed some retail therapy, as much as getting some new yoga gear to keep me motivated. When I got in the store, I had walked in solemnly, not really seeking any interaction, but there was a girl working there who was so friendly. She came right up to me even as much as I was probably giving off counter vibes, and made a few hilarious jokes as well as commenting on how shitty the weather was. To my surprise, her spirit was exactly what I needed and in my head I thanked her for having such positive energy. It goes without saying that every day kindness can have a greater effect on people than you even realize or may never realize – because people like me, who don’t appear on the surface to be struggling, may just need a smile that day or an act of kindness to lift spirits!

I’ll discuss the pre and post-surgery in my next post.