(un)wind: Life After Diagnosis (+ link roundup!)

 I've had quite a few people ask me what I do with my days now that I'm off. Truth is, I actually try not to lie around that much. In the beginning I found it hard to find a reason to get out of bed in the mornings: I wasn't working and my life didn't feel like it had a ton of "purpose". I've tried to abandon that idea and plan and fill my days with fun activities (even something as minor as a trip to Target, or a walk to Starbucks). This last week I haven't been that tired and I wanted to get out and do as many things as possible before my next treatment!

"Learn, laugh, love, smile, cry and dream. Care deeply. Don't hate. Mostly, though, laugh. Share the passion of life's grand adventure"

Can I eat this again?

I love days when Jeff is off. I take advantage by trying to get him to wake up at 6AM with me (he really loves that). We were excited to have a few days that didn't involve hospital visits, so we decorated our apartment for Christmas and had lunch by our place! I thought the quote on my place mat was very fitting.

 Salvation army Christmas concert with my aunt & family! Tradition.

Alas, on Wednesday, I had a rough one. I was tired. I had a sore throat (which I learned Thursday, is a common side effect of the flu shot! Which I had this week. Since my immune system is low, it's actually totally normal for me to get a bit sick from it). I was having some major hot flashes. My body hair started falling out, and then this morning my actual hair started coming out in clumps.

I was so hard on myself yesterday for not going out and crossing a bunch of activities off my to-do list. Instead, I laid in bed and listened to the ENTIRE Serial podcast. All 12 episodes. (Have any of you listened to it? I become obsessed fairly easily with TV shows, but this was the first time I've listened to a podcast. I loved Sarah's voice and diction. I found listening to someone speak totally relaxing. It's now made me super interested in trying out audiobooks!).

 This is what 14 hours in bed looks like. 

 I think part of me may have been nervous for my oncologist appointment which was Thursday afternoon. Thankfully, it's as if the universe knew I needed some GOOD news, and as some of you may know: I got back great news!

1) Since my side effects from the chemo were minimal the first time, it likely means I will have a fairly easy ("easy"..ha) time throughout the rest of the treatments. This means... I may escape chemo without any nausea! Woo. Let's keep our fingers crossed on this one.

2) The biopsy I had done on some lumps in my left breast came back as benign (TMI? If so, Sorry but...). Double woo! This may have an impact on the eventual surgery I choose to have.

3) My oncologist then asked me..so, is it working? I told him I wasn't sure. The tumour still felt fairly large to me. He measured it, and told me he'd have to disagree... that when he originally measured it, it was 10cm, and now it was 8cm. And, if you do the math: 10x10x10 = 1000... 8x8x8=512. This means, despite how I felt... it shrunk quite a bit with only one treatment! He smiled and told me to go  celebrate this Christmas because he couldn't have given me better news.

So, going into the weekend I'm super relieved (and also super in need of a wig). I think our mind gets the best of us sometimes: I tried to make myself feel guilty for not being active when in reality my body is fighting a major battle. Even though I feel better on the outside, my insides are fighting hard for me right now. A bed day may be what the doctor orders every once in awhile and I guess I accept that (I did hear the Real World just started up again... ).

Anyways, I have been spending SO much time clicking around the internet that I thought I'd share some interesting links to make your Saturday (and visit to this blog) all that much more interesting! (also, less cancer related... so much for not making this a cancer blog...)

Weekly (un)Wind:

-  How To Be Powerful, Likeable, and Female: This article talks about my favorite subject(s): women, the workplace, management style, and Jenna Lyons.
- Why Authors Don't Compete: this article by Seth Godin is awesome. "More reading is better than less reading, even if what's getting read isn't ours."
- This etsy shop makes all "miniature" doll sized, diorama friendly (amazingly adorable) accessories. Picture mini Harry Potter, mini Vogue, mini Ouijia board.The detail in them is crazy!
- My best friend is getting married this summer, so I've spent my fair share of time looking at wedding blogs. So far, this wedding is the most unique and fun I've seen yet!
- Also, if you're looking for some good book recommendations, this is Amazon's list of top books you should be reading in your lifetime (dated last February).
- Lastly, I have talked about one of my favorite blogs on here before, but A Beautiful Mess has been great with the holiday inspiration! I am obsessed with this Palm Springs gingerbread house, and these no bake oreo truffles (I just made them...they're amazing and so easy!)

Happy Saturday! (Now go listen to Serial if you haven't done so already)

xx

Sam

(fund)Raise: Cancer Awareness

 

Note: If you want to feel amazing about humankind, read on. However, it's going to be a long one. You have been warned! 
When my dad came to me and said that the Ottawa rugby community wanted to start a fundraiser for me, I said no automatically. No questions asked. Fundraisers are for people that can't take care of themselves.

When I went to my first oncologist appointment, Jeff and I started to realize this was getting serious. My doctor outlined all of my side effects: nausea, extreme exhaustion, short of breath, mouth sores, dry skin, hair loss... and you absolutely can. not. get. sick. This is the only life threatening side effect of chemo; your immune system is at an absolute low (chemo stops the regeneration of cells, so it not only kills cancer cells that are rapidly dividing, but it kills all healthy cells as well). A little cold and the dreaded winter flu can be potentially life threatening (Although I have always wanted to take an ambulance ride...kidding mom).

My oncologist then gave me a stack of prescriptions and sent me on my way. There were 4 different anti-nausea meds, a prescription for a wig, anti mouth sore meds, and Neulasta. Throw in some anti-anxiety medication and some sleeping pills and I'm ready for real chemical concoction! Sorry, body.

"Funny" story time:

As mentioned in previous posts, I happen to think I am invincible. In fact, some weeks I found myself working 60-70 hours a week (of my own doing), completely ignoring the e-mails regarding my benefits that were sent out repeatedly in my first month at my work.

Next thing I know, I'm being told I have cancer and I have absolutely no benefits. Being a large company, I can only opt into my benefits in April... every 2 years. Uh oh. 

Long story short: paying $25 a month for benefits that have no limits (meaning they pay for 80% of ALL my prescriptions no matter the cost) is SO WORTH IT. I am so lucky to have some incredible people on my side at my work who moved mountains and made miracles happen: next thing I know I'm signed up for benefits back dating to November 1st. Thank you to the book Gods!

Okay, back to the meds: Neulasta is a shot that I give myself (or in this case, my mom administers to me) after every chemo session (Okay, so not only do I have cancer, get hot flashes from menopausal side effects, but now I have to give myself needles? UGH). Neulasta dramatically increases my white blood cell count, boosting my immune system and reducing the risk of infection. We went to fill the prescription to find out it costs upwards of $2500 (x 6 chemo sessions). Again, thank you benefits. Then I go to shop for wigs, realizing they are also upwards of $1000. Factor in parking at the hospital and that sick leave EI will only kick in at 50% of my pay, and my rent coming out this week... and you can start to slowly see my face turn stark white.

Knowing my dad, he disregarded my message of "NO FUNDRAISING", and his friend Gary Thomas went ahead and set up a youcaring page for me with a goal $2500. I started to see it shared by my family on facebook. Mortified, I told everyone to delete it. I wanted nothing to do with this fundraiser. I hadn't even told all of my family and friends yet!

Then I started to see the amazing outpouring of support on the fundraising page; not only in donations but kind words and thoughts. I started receiving e-mails and facebook messages from other families that have been touched by breast or other forms of cancer, giving me tips and tricks to get through treatments. And next thing I knew, I hit the goal of $2500.

I decided to take to my Facebook and share a link to a blog that I found... it scared me, but also reassured me that I could get through this next year. When searching for others "like me" (that 0.4% of those that get breast cancer at 24) I found Nalie. We have the exact same story: diagnosed at 24, same cancer, varying treatments. We will both have gone through the highest forms of chemo, similar surgeries, and radiation. I found so much comfort watching her videos (comfort meaning I am scared sh*&tless, but atleast know what I'm in for! Knowledge is power). I posted the link to her blog hoping it would help my family and friends understand. Mainly, I wanted everyone to know so when they saw me at the grocery store without hair, it wouldn't be an awkward run-in. Ha.

Then came the messages and e-mails. Hundreds. Seriously. I woke up to 68 facebook messages the next day, and they just kept coming. I was receiving links to blogs, uplifting videos and quotes. Well wishes from friends from high school, teachers, friends of friends, parents, strangers. They all asked what they could to do help, asking I let them know how I'm doing. 

The Ottawa Rugby community is the most genuine group of people you could choose to know. When I was asked if I was "surprised" at the outpouring of support, I had to think, and said "no". I'm shocked, I'm overwhelmed, but surprised? No. These are people that have helped me move, helped my parents build a restaurant from the ground up; they support each other and are the most loving and sweet people you could meet. Next thing I know, Toronto rugby has shared my page, and the Canadian Rugby website wants to feature my story. Like I said: kind people.

I spoke with my doctors, Jeff, and multiple family members and friends about the idea behind fundraising. So many people want to help, want to give at a time of crisis, but didn't know how. Everyone at the hospital has been adamant about allowing yourself to receive support: remember it, and give it back later. So, I said fine. And then the fundraiser went viral.

As of right now, it has been shared 899 times and we have received $9000. Wow. I've been struggling with how you even begin to say "Thank You". So, in the plainest terms: Thank You. Jeff and I no longer have words to express how grateful we are.

I also have to tell the story about my friend (and possible guardian angel, if you believe in that sort of thing) Katrina. Katrina and I met as co-workers at my last job, and have continued to grow into close friends ever since. She has been one of the most downright hilarious and positive influences in my life. She is the kind of friend that will cry with you... but only for so long, until she gets down to the business of making you feel better. She calls to check in after every appointment. And, after she found out about my diagnosis, started planning events and raising money to help me keep living a "normal" life.

  

  

She held a pay-to-play flip-cup and beer pong tournament. She placed (adorable) donation boxes at her work, her parents work. Her wonderful boyfriend made up flyers and they put them in mailboxes all over the city, planning a major bottle drive. She posted about this bottle drive on lots of local Facebook groups, and the stories of support gave me goosebumps. She had women calling her, saying they did not live in any neighborhoods where they were canvassing, but could they please donate because the cause was close to their hearts. She had people who weren't home, but left money taped to the flyers for when they came by. They are still having people contact them, saying they will save their bottles throughout the holiday season. Katrina had everyone that donated write their names on paper angels for me, and put them all in a photo album for me to look at when times are hard (cue the ugly cries). It is likely the nicest thing anyone has ever done for me. We had a pizza night where Katrina surprised me with the donations, and I was obviously shell-shocked. She had shopped and made me the ultimate care package: cozy socks, nice makeup, comfy sweatpants and sweatshirts: and of course, she isn't going to let me slum it for the next year: she got me a sparkly skirt and beautiful dress because even cancer patients need to dress up and have fun (laughing as I type that).  That, in pair with the donations collected (upwards of $1500), have yet again shown me the kindness of friends and friends of friends and strangers. (How many times can I say "kindness" in one blog post?)

  

While I bawled my eyes out at her generosity, Katrina just said to me: "You didn't ask to get sick. This is what people do when people get sick. I would hope someone would do this for me". Making it seem as if what she did was no big deal.  Because that's the kind of person she is.

So what do you say when friends, family, and strangers show you this sort of generosity? Honestly, Jeff and I are at a loss for words. Thank you will never be enough.

So, instead, this is what I plan to do:

We are going to open a bank account that the funding will go in to. This account will strictly be for medical expenses.

1) This will help cover the medical costs incurred that are not covered by my insurance.

2) This will help me get a fabulous wig and some cute scarves to help keep me super warm this winter!

3) This will allow Jeff and I to continue to independently live in our apartment. This has meant SO much to us. My apartment is the coziest place I have ever lived, and I was so sad at the idea of having to give it up. So, for that, thank you x a million.

4) There will be costs around my surgery, so this will help with all clothing tailored around the surgery that I will have to purchase.

5) Any "ghost" costs, including parking at the hospital, wages lost from my mom taking time off work etc.

6) Lastly, if my genetics test come back positive, this will mean that my family may have to decide to undergo preventative surgeries, where there may be costs to them that are unexpected. This will also help cover this.

Anything additional and leftover, I can assure you, I will reinvest back into the community. I have been doing intensive research into the CBCF, and due to the complete shock of my diagnosis, I plan to do some work with them regarding breast cancer awareness.

Jeff said to me about a week ago: "Hey! You haven't cried in so long!". And I thought...how can I cry? How can I even be sad? I am surrounded by so much love, so much kindness: from my immediate family all the way to the outreach of complete strangers! While there is so much focus on all the "bad" that is happening out there, I have witnessed an incredible display of selflessness within my own community. People are good. In times of crisis, people reach out with stories of hope. People remind you of their love for you in the most sensational ways. If my life were to end tomorrow (theoretically..because, like I would let that happen), I wouldn't be devastated, I would be so happy. Going into Christmas (and my next treatment) I am so grateful for all the wonderful humans all around me. Love to you all!

xx

Sam

(re)Assess: 24 years young

When I was younger my mom used to tell me I used to ask her "Mama, why am I here?".

That's a pretty loaded question for a small little 5 year old to be wondering, and it's something that has haunted me and excited me for the short 24 years I've been existing here in this world.

I also used to tell my mom that when I was older, I wanted to be an artist. I love to colour and paint and read. Thankfully, I still have those passions as I have the feeling I'm going to need to rely on them in this next upcoming year, as I'm starting to have (more) then a lot of time on my hands.

Let me take a few steps back. Last month, I was diagnosed with breast cancer. I can't even believe I just typed that. Me, who works an ungodly number of hours a week, full social calendar, consistently pushing myself daily until I hit my breaking point... you mean... I have cancer?

I went in to the doctor on my 24th birthday (November 18th will now be so much more then just my sister and I's birthday going forward) after I had found a lump in my chest, and my surgeon told me those dreaded words you just never think you're going to hear. Sam, it came back as a cancer.

It's going to be okay.

You're going to be okay.

Then there was something about leaving my job immediately, losing my hair, losing my fertility, and undergoing major surgery. I stopped listening around then.

What could have possibly caused this to happen to my seemingly healthy 24 year old body? Was it my lifestyle? (Have I been drinking too much diet coke? ...this actually crossed my mind). I just worked a month of overnights, for goodness sake! I am healthy!

   

24th Birthday! My last "hurrah".

For those that are interested, I have Stage II invasive ductal carcinoma (IDC). This means that it's spread to the lymphnodes under my arms. Luckily, it hasn't metastasized to other parts of my body.

Here's how I can try and summarize the last month for you:

So. many. appointments.

So. many. tears.

So. much. information.

It turns out there's a lot to think about when you get cancer. Firstly, when you're the 0.04% of young women that do get diagnosed with breast cancer at my age and have to go through chemo (.04%... I'm really lucky, obviously!), there's a little thing called fertility you have to worry about.

After two weeks of invasive tests, my oncologists and I decided not to pursue fertility treatments. Breast cancer can test positive for progesterone and estrogen, and mine happened to come back positive for both. It was a little too risky to pump my body with any more estrogen to harvest any baby Sam & Jeffy's. The alternative has been to put myself into a menopausal state, by taking a shot of Lupron before every chemo: it completely shuts down my ovaries to protect them from the chemicals. Fortunately, because of my age and health, there is a good chance I will be fertile when my treatments are done, but there is always a chance I won't. Jeff and I spoke about it and decided this was okay (well, not exactly okay, but you know). I always pictured a little blonde baby girl, a little mini-me, but if that isn't what life has planned for me, Jeff and I have lots of love to give to any baby that comes in to our lives down the road. There are options.

Fertility treatment center selfie. Apparently Jeff thinks that's pretty weird.

We're also in the process of getting the rest of my body checked out and OK'd for any further spread of cancer. MRI results are pretty bang on, but you can't be too sure. Tomorrow I have a heart scan, I've had multiple biopsies, and I have been through every kind of CT scan you can imagine. At some point, you feel a loss of control: constantly being poked and prodded and just going through the motions.

So far, so good. My bones are healthy. My ovaries are healthy. My abdomen is healthy. The only concern right now are little nodules on my lungs, but I've been told not to worry about those just yet. We're going to check back in 3 months from now and see what they turn out to be.

 

My biopsy buddies!

Last Tuesday, I started my chemotherapy treatments (I'll write a whole post later down the road on Canada's incredible healthcare system and all of the amazing doctors and nurses I've met along the way). I'm being administered FEC chemo (click the link to read all of the fun side effects that I'm going to be facing). Did you know that only 10% of people actually get intensive nausea from chemo? This was the biggest shock to me! I was picturing movies like Stepmom and 50/50 and torturing myself thinking of the effects it would have on my body. With this first round of chemo, I'm almost a week out, and the worst of my side effects (so far) were heartburn and just feeling a little..weird. My scalp hurts and my bones hurt. I get headaches often. I'm very tired and I get short of breath easily.

The chemo diet.

There's also something they call chemo brain and it's definitely a thing. I think my blog "(un)Organized Mind" has a whole new meaning now that I've been diagnosed with cancer! I couldn't really string sentences together, my text messages didn't make a whole lot of sense and I don't really remember the first few days fully. I fully expect my side effects to worsen as my treatments go forward, but as of right now, it is definitely Sam: 1 Cancer: 0.

With the FEC treatment, I go in once every 21 days for chemo. This means that my next chemo treatment is going to be on December 23rd...Merry Christmas to me? I keep trying to tell myself that a year of my life isn't a lot to sacrifice in the long run: this time next year I am going to have the biggest birthday party and the best Christmas to make up for it.

My chemo is being administered intravenously, and thankfully they've invented a little thing called a portocath so I can stop getting so many darn needles! It's a small incision and device that's put into my chest, and I can get all bloodwork and treatment through the port. Unfortunately, I had it done the morning before my chemo and it is extremely sore right now. Again, a minor pain in the grand scale, but I would definitely love for my body to speed up with the healing process!

Yikes. Portocath surgery.

What no one tells you the worst side effect (for me anyways) is going stir crazy and anxious. I can't sleep (I wake up at 4AM daily), I can't watch TV, I can't read. I'm so anxious all the time! I guess that's normal and something I'll learn to manage, but going from being so busy to not even having to set an alarm in the mornings has made me quite the Nervous Nelly.   

My hair is still holding on for now, but it will undoubtedly fall out by Christmas so I'm just counting down the days at this point. Jeff's dad has set me up with his shaver so I can be ready to just buzz it at the first sight of hair loss (recommended to me by a good friend, shaving it all off can be empowering rather then seeing it all fall out sporadically!). I keep saying "I'm over it" when it comes to my hair but I'm sure it is going to be quite shocking when it happens. Right now I don't look "sick", but without hair, I know it will start to become very real, very quickly.

Pink hair - because, why not?

So, those are my updates! I will need to dedicate a separate post to detail the events that have taken place over the past two weeks (re: fundraising) but to everyone who has sent me all of their well wishes and donations: your support has overwhelmed me and I don't think I can ever say thank you enough. I feel like I owe it to everyone to give you the updates you deserve on how I'm doing, but more importantly, hope that if there is anyone else diagnosed (young or old) with any kind of cancer, breast or not, that you reach out to me because I know how lonely you may feel. I felt (feel) the same way.

"Deep breaths"

I guess if I'm going to end this post, it's going to be with this: my family and I keep saying "you never think this sort of thing is going to happen to you". Just remember: we aren't invincible. You always take advantage of your health until you don't have it anymore. I was the picture of health before being diagnosed. Anything can happen, to anyone, at any age.

I can't lie though, it's pretty scary looking into this next year, knowing I'm about to put myself through hell. I'm trying to tell myself that the answer to "Why am I here?" is that I'm meant to fight this battle, I'm strong enough to beat this, and something good will come of it. I don't know what "it" is yet, but I'm hoping something (anything) will present itself to me.

How I am going to try to remember myself.

I'm going to try to avoid making this a "cancer blog" because that's so not me. But, I am definitely interested in keeping in touch with everyone I love and this is my easiest way of communication (nothing like cancer to show you how loved you are! ;) ) so check this space if you want to follow along with what I'm up to. In addition, please reach out to me in the comments, find me on facebook, or e-mail me. I'd be MORE then happy to hear from you!!

xx

Sam