Dec ‘16 - Living A Life Of Miracles Ain't Easy

Dec 9th 2016

I wasn't sure I would post on my blog ever again. For a multitude of reasons, mainly that I didn't feel like I could be honest anymore, and because I've felt so isolated in my diagnosis. I liked to joke around during my year of getting through Stage ||, and I just don't feel like I can joke, or laugh, or smile at the idea of this cancer spreading through my body. I'm void of all jokes.

Something usually happens, though, that makes me change my mind. I read this article from a woman in one of my brain mets support groups. I cried, and was touched, and the whole thing just felt like my story, too.

"Albert Einstein is quoted to have said, “There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”

I’m still choosing to live a life of miracles, but I’m honestly saying that it’s not easy."

I posted in my group and tagged Vickie, saying how much I loved the authenticity and honesty in her article. She didn't respond. This was a bit surprising, as she is pretty active. The article was written on October 3rd. Vickie passed away unexpectedly 11 days later, on October 14th due to complications from her liver mets.

It made me realize how valuable it can be to others to talk about your diagnosis. How much it can mean to others to read that someone else is going through this too. When I start feeling isolated I remember how not alone I am. How many women are living with this disease. How hard it's been to act normal all the time, and how I don't have to live that way. I think the fear I feel keeps me trying to live my life as if nothing is wrong, but the truth is, this isn't going away.

It's a hard life, trying to act like you're normal; when really you've had a raging headache for hours, you started your day by inexplicably throwing up, you've had to (literally) run to the bathroom a few dozen times and you've gotten maybe 3 hours of sleep. Top it off with bald patches that likely will never grow back and an entire closet of clothes that no longer fit you; well, let's just say some days I don't feel like a bundle of joy anymore.

Most days, I push through, do the socializing thing, and when I climb into my bed at the end of the day, I just close my eyes and lie there and finally let go.  No more wig, or pencilled in eyebrows, or bending down with knees that can no longer support me, or things that just don't matter. Just me, Jeff and Mavvy. I think to myself almost every night how no one could understand what I've gone through. What I'm going through. Isolation.

It's been going on like this for a few months now. I kept thinking how I needed to pull myself out. Well, here I am, digging myself out of the premature grave.

I think realizing you need to change is always the first step to solving the problem. The second step is understanding how you're going to get there.

Here's my first step, I guess.

I've had some positive appointments recently: my scans continue to be stable from the neck down and the fact that I don't need to go for chemo weekly anymore (every 3 weeks now, and just a maintenance treatment), has been amazing. My brain scans came back with minimal swelling and all lesions either significantly smaller or not existent.

I have been having inexplicable side effects though - intense nausea that lasts all day long. Most days I can't wake up without being sick, and some nights as well. It is hard to be motivated to do very much when you're constantly feeling sick, but I've managed to push through and had a lovely birthday in Montreal and my apartment is fully decorated for Christmas.

I remember this day as if it was yesterday, still writing this post. I concluded my words didn’t matter enough to finish, and besides, I was too sick - confused - when in one minute I felt incredibly hopeful only to come back to this feeling horribly hopeless. I guess that is my definition of an MBC life....

Not much has changed since December 2016, more failed treatments and more brain radiation. Everything comes back around. 

Sam

What's Comin Will Come (& we'll meet when it does)

    

  

A (lazy) blog post of pictures from the past few months...

        

 

 

        

...finally sharing my beautiful bridal shower & bachelorette...

 

... & of course for those that don't have me on social media... the wedding!

I haven't been able to bring myself to write full updates yet, so here are some pictures! I will say that I have been given stable results in my lungs and my bones (which means I am able to get treatment every three weeks now, versus weekly!), and I am awaiting an MRI on my brain to let me know how the gamma knife procedure worked.

I've been fairly sick and it's been challenging mentally and physically. Every time I have a good day and think I'm finally moving forward, all of a sudden I'm sick again and I take ten steps back. 

My diagnosis is isolating, exhausting, devastating, and demanding. It feels like sometimes it's all I think about; how to get through the next ten minutes, hour, day. Incremental living between scans is draining. Never being able to plan too far ahead is disappointing.

"Healing is not linear"

I am happy - and I am still able to enjoy the little things -  but I can say for sure:

 living this life is not easy.

      
     

After looking at my above pictures I figured I would include a "real" picture. This is what most of my life looks like. Eyebrow-less and being kissed by the dog (and not pictured, by my loving husband! Still getting used to that one). Oh, and a few episodes of Walking Dead and This is Us may not be pictured as well.

Happy Monday. Thank you as always for wishing me well. xox

Dealing With Grief

When grief weighs on you like your own flesh only more of it, an obesity of grief, you think,

How can a body withstand this?

Then you hold life like a face between your palms, a plain face, no charming smile, no violet eyes, and you say yes

I will take you

I will love you, again.

In the past months since my re-diagnosis in February I had been faring very well. My chemotherapy seemed to be working: all of the wheezing I had in my lungs has completely disappeared, the pain in my arm gone as well. I have been continuing to work, thrive, plan a wedding, and in turn live a very full life.

I was so excited when I had the opportunity to travel for two weeks with Indigo and be a part of our new store launch in Sherway Gardens. Unfortunately, it was in my last days of travel when I started to realize I wasn't quite.. right. I would wake up in the morning very cloudy and confused, stumbling to use the bathroom and banging into the walls. I had a few theories on this; my new wig was soo tight! Maybe I need a break from it. I'll wear my old one today. I think I should wear my glasses: my prescription must have changed. I think I'm still tired from working overnights last week. I think it may be the travel?

I was able to plan my treatments around my travel schedule, so when I returned on the Friday I had chemotherapy first thing. Firstly, I mentioned these debilitating headaches to my oncologist. Unfortunately, they looked at me and gave me a very troubling response. We are going to send you for an MRI right away. I don't think you should be alone. This really isn't normal.

It turned out, it wasn't. 45 minutes later I was sitting in an MRI, and a half hour after that I was receiving my chemo and my oncologist came in to explain to me that nine lesions had been found on my brain.

I was shocked, but somewhere I was prepared. I knew that something wasn't right. But, brain cancer? For some reason, it just felt worse then any other diagnosis could have been.

A radiologist came to see me shortly after where he recommended me for Whole Brain Radiation treatment (WBR). Essentially, due to the excessive number of tumours, they did not feel comfortable just performing stereotactic surgery (laser) and thought they would see best results from the radiation.

I'm part of a few survivor networks out there now whom are extremely opinionated on this WBR business. I wish, in turn, I may have asked more questions. I wish I may have investigated and pushed my options a little further.

I had been told WBR could cause fatigue, headaches and nausea. It wasn't really explained that I could get as sick as I did. We did not talk about many long term side effects, which are rare but very serious. Many oncologists will not treat with WBR, as cognitive ability long term can suffer. For me, we decided to do five treatments over five days. This didn't sound too bad to me, so I agreed. I also like to think I tough things out better then others, apparently. It was within the first 4 treatments, however, I noticed my overall well being and quality of life take a very significant decline. Many women had told me they were able to continue working during this treatment, so I was hopeful, but I guess my intensive headaches going into treatment were detrimental to my health to begin with.

 
                  

What four weeks of my life looked like. Every. Single. Day.

I finished my radiation treatments on May 30th. It's been about 4 weeks now for me, 3 of which where I have not been able to get out of bed at all. My joints would not move, my muscle mass atrophied, my skin broken in a rash, the intensive hunger and  of course the rapid weight gain that the steroids can cause. The heartburn, nausea, and naturally... the headaches. My right hand doesn't seem to be fully responding anymore: I'm super shaky, make mistakes when I'm texting, and my penmanship is so sloppy!

The mask they make you wear for the radiation is pretty tight.....

If you have read my blog, you likely know I like to get on with things. I don't like to dwell, I can usually push myself over the edge and just... keep living. This time, I couldn't. It has genuinely been the first time I can say: If this was my new quality of life, I'm sorry, that is not a life worth living.

In those sort of circumstances, you can really scare yourself. The whole "looking death in the eyes" thing. It makes you wonder where you go, where your personality has gone. The pure survival instincts come out and for me, I was just... not nice. I reclused, became negative, picky, mean, upset, angry and feeling extremely, extremely sorry for myself. I sat in my room for hours, staring into space, not being able to speak or form thoughts. I kept telling Jeff "I'm just not here right now". It was the only way to explain it. I don't know when or how I passed the time.

Every night in a bought of insomnia I re-mourned every loss I have ever felt I had to experience: my loss of fertility and children, my career, my future, my strong body and able mind. I mourned and cried for all of it and I didn't let anyone stop me for a second for feeling bad for myself.

Then, at some point tonight, I started to feel... better.

In fact, the idea that I am sitting here and am not SO ill still feels like somewhat of a ... miracle?

I had a few women message me and say: just wait. It isn't the end. It will pass. As the fog starts to lift, you start to realize this may not be it and start see the other side. Sure, I still can't go to the bathroom by myself without my little sister picking me up off the ground, but I can see straight for once and that hasn't happened in nearly two weeks!

WBR can take up to 6 weeks to work, meaning we need to give it some time. Like when I had radiation to the breast, I burned and peeled for weeks after finishing treatments. My brain will be swollen like a balloon for weeks, and the steroids they have me on are the only things to control that. The Decadron is probably, no definitely, the worst drug I have ever been made to take. I could actually call it inhumane, but my radiologist told me if I suffered a seizure I may have to get a stent from my brain to drain the excessive fluids into my stomach so for now I guess I'd rather avoid that... steroids it is!

The wedding has of course been on my mind every day, and I haven't been able to oversee how sad and unfair it is that my body couldn't wait just one more month. We had weeks where we thought we would have to postpone, and the thought of that was almost more stressful (and sad) then my current situation was! So last week, they sent me for follow up MRI's and scans to see how the swelling in my brain was doing, and if they could lower my dosage of steroids. If they could, I may be able to recover enough to still have our wedding.

So, here's the point where I get to tell you some good news!

I haven't actually had any scans since I started my new treatments back in February. Bones take a bit longer to respond to chemo, so I just scanned my brain and lungs. For the brain, we were primarily looking at the swelling only as it is much too early to tell if the WBR is working. But: surprise! My radiologist said that almost all of the lesions they found actually had been responding already and looked smaller. My lungs were scanned, and some tumours have been resolved, some smaller, some stable. No growth!

Win!

 

The first day I was actually able to walk Mavvy outside by myself!

This means I stay on my chemotherapy of Taxol, Perjeta and Herceptin. I wait my time for the WBR to take full effect, and we see what's left over. They typically don't do "open brain" surgery anymore (atleast...not yet...never say never I guess!), and instead they use lasers and "zap" out anything leftover with a surgery called Gamma Knife. This surgery will probably happen later in the summer. I've heard side effects are minimal, which is awesome.

So... the wedding is on! July 9th, here we come. And if I could lose the chipmunk cheeks from the steroids before then, I would be very grateful!

Some peeks from our engagement session, since some people have been asking to see more :). We weren't sure if we were an "engagement" session type but I am super happy we decided to do them. Perfect memories!

In all seriousness though, there aren't a lot of chemotherapy options that cross the blood brain barrier which makes brain cancer so much scarier. My current treatment won't reach my brain. I could try and switch to a treatment that may, but my current chemo is keeping me so stable from the neck down that I can't chance it. So, it looks like after we take care of the tumours in my brain I have now, we just keep watching it carefully. Hope that the radiation and surgery did it's thing. Hope that I have plenty of time with no evidence of disease left in my brain.


Anyways, that's all the updates I have for today! I had treatment this morning and am feeling pretty tired and zonked out so it's bed time for me (If I can sleep over Jeff yelling at the TV about the NHL draft. Oof!)

xx

Sam

 

(I finished reading Teva Harrison's book In Between Days. She's living with Metastatic Breast Cancer as well, and if you ever want a glimpse into my life, I would highly recommend!)

Living In Dark Places

I thought I had learned alot this past year about fear, mortality, true love, friendship, family - and especially cancer.  Turns out, there is always something more that you can learn and experience - I just wish I didn't have to.

When we talk about cancer, most of the time we use phrases like "You'll beat this!". We call ourself "cancer survivors", or urge our friends to fight, fight, fight! The next few minutes you spend on my blog will hopefully make you rethink this mentality. 

About a month ago, I found a very small lump under my right armpit - next to the area I had the mastectomy. I am not a very lumpy person, so I thought this was a bit odd and had a biopsy done on the spot right away (learned my lesson from last time! No waiting around!).

I got a call about a week later from my surgeon, who told me it was a recurrence of my cancer. I'm not sure there is anything more shocking you can tell a person they have cancer the first time, but I'll tell you this: telling someone they have cancer for the second time? Meltdown mode.

My surgeon was quick to assure me that even though it was closer to my armpit it was still considered a local reoccurrence, meaning it was still in the breast tissue and was not confirmed to have spread anywhere else. She set me up with CT scan and a bone scan in the meantime though, just to be sure.

The anxiety of waiting for test results is all consuming. Knowing that these results will completely determine your entire life is crippling. I had my tests two weeks ago -  on Thursday, and on Friday I found out my CT scan of my abdomen was clear, but that it looked like I had a fairly bad infection in my lungs.

I called the hospital repeatedly on Monday looking for my bone scan results. Nurses were able to tell me the results were in, but that they weren't able to read them to me over the phone. I got that sinking feeling you get when something is about to go very, very wrong. I never received a call that day, and had to go to bed with the biggest pit in my stomach. I can't even put into words the stress I've felt over these last few weeks.

I received a call the next day from one of my oncologists who had some news for me regarding my scans.

They found cancer in the bones of my right arm: around my elbow and by my right shoulder. Due to this, it was determined that the cancer is also in my lungs: it was not an infection but a recurrence.

I have Stage 4 breast cancer.

I didn't cry on the phone at that time. I don't think I believed it. I went home from work, and told Jeff my news. If I had to determine the most heartbreaking moment of my life, that was it.

There isn't anything you can do to prepare for this. To realize your future as you had previously imagined has completely changed. To know your hopes and dreams for a career will not come to light. Coming to terms that I will likely never have my own children. I may never buy a house, meet my sister's babies, grow old with the love of my life.

I met with my chemotherapy oncologist on Thursday. Arguably it was the second hardest, and  heartbreaking, day of my life. It was the first time I had someone tell me to my face that based on the scans, I was living with Stage 4 breast cancer (For some back story, once a cancer spreads from it's original location - for me, the breast- throughout the rest of the body, it is still considered breast cancer. For me, my breast cancer has metastasized to my lungs and my bones).

My biopsy determined my tumor markers had not changed at all - I am still triple positive (ER, PR, HER2 +). My cancer is still digging all the hormones. The only scary part is that this cancer developed while I was on some pretty strong drugs: Herceptin and Tamoxifen.

My oncologist came up with a treatment plan for me, and I will be starting chemotherapy again on March 15th. I will be on a two week on/one week off treatment plan, where I will be receiving Taxol, Pertuzumab (Perjeta), and Herceptin. These are all new drugs for me, and due to the Taxol, I will lose my hair again about three weeks after my start date.

Symptoms wise, it shouldn't be as intensive as my first round. I will not be getting any Lupron injections (which was what put my body into temporary menopause), and I will not need the Neulasta shot (injection in my stomach after chemo). That means I automatically skip the achey body and hot flashes which is good! I may have flu-like symptoms but we'll just have to see how all of that goes.

The aim of this chemotherapy will be to manage the cancer. There isn't anyway to "beat" Stage 4 cancer. There is no cure. It is something that will need to be treated for the rest of my life.

The hopes are that I respond extremely well to the chemotherapy drugs, and possibly it will shrink the cancer and eliminate it to a point where it can't be seen on the scans any further. That is the ideal for Stage 4 - pretty much a dream. Until then, keeping it managed and from spreading any further is the real intent.

I asked my oncologist not to talk to me about statistics and life expectancies because I just have no interest. I still plan on living a very full life, and I can't imagine having that sort of knowledge would do anything very positive for my mindset. When you look at average life expectancies, it doesn't take into account that there are many developments that have come out in the last few years for those with Stage 4, especially HER2+.

In the meantime, it really puts life into perspective. I had originally decided my wedding would be Summer/Fall 2017. All of a sudden Jeff and I felt very strongly - why wait? It became less about the perfect venue, the most stunning decor, and more about getting to be his wife as soon as possible. We set a date in only 5 months.

The day after we found out, we adopted a dog (Maverick) from the SPCA. He is perfect, and also something we had always discussed wanting to do but just never went for it. The time was never right. It seems like finally, the time is now.

Before my treatments start, I have a surgery to remove my tissue expander and put in an implant. This will remove all of the metal from my body so I can finally go for an MRI - which will determine more about the cancer in my bones.

I plan on doing all of my healing from this surgery in Mexico - Jeff, myself and some friends plan on leaving around March 4th. Again, the post cancer trip I never took in October... all of a sudden, the time is now.

It has proven to be really difficult to not let myself live in the dark places. The places of gloom and doom, the "why me", the mourning, grieving for the life I had always imagined. I lived there for a few days and it was very miserable. I didn't eat, or sleep, or do much of... anything. I decided I couldn't live there, in those dark places. My biggest wish is that my family and close friends can do the same.

My new diagnosis has made me question my blog and my writing. The peace I felt from writing has disappeared. My blog can't be that beacon of positivity anymore. It will likely be sad sometimes. I don't know what is "too much" to share. Some of the corners of my mind have very dark, anxious and lonely thoughts. I feel as if I can't half-share what the experience is like; It has to be all or nothing. Unfortunately, I don't know if I'm prepared to share that part of me, and I'm not sure my family and friends are ready to read it. Maybe it is something that we will all grow into with time.

So for now, there's the update. It's out in the open.

If you've messaged me recently and I haven't answered, I'm so sorry. I couldn't talk about it yet. I wasn't ready.

I think enough time has passed though.

Thank you for all of your continued support.

xo

Sam

(Note: I wrote this post a few weeks ago. Mexico was fabulous, and my first treatment is this Tuesday at 8AM!) 

2016: Hair Today, Gone Tomorrow

2015 was a pretty crappy year that sometimes felt never-ending. We had some fun and laughs, but overall I can't say I'm sad to see it go (#smellyalater). I could lament about how I had to do chemotherapy, have a full mastectomy, or endure 25 brutal rounds of radiation but instead, I'm going to talk about my hair.

It seems recently, hair has been on my mind. I have always remembered my dreams pretty vividly - normally they're a reflection of some part of my subconscious mind, likely including the people I stalked on facebook the day before, so it's safe to say they end up being pretty... weird.

The last few weeks though, I've been having crazy recurring dreams though, and they all have to do with my hair!

In my dreams, I "wake up" and realize enough time has passed and I have long hair again! I spend my whole dream running my fingers through my hair and putting it up in a ponytail and taking it out again. It's so vivid if I close my eyes I can actually feel my hair between my fingers.

Now I'm not a dream analyzer or anything, but part of me chooses to believe that this is a metaphor for something bigger then just... hair. I am in such a transitional phase of my life right now. I can't fully be normal yet - whenever I feel normal, I get that cancer-pit in my stomach. I look in the mirror and it reminds me of how much has happened in such a short span of time. I think the "normal" I was forced to deal with this last year - appointments, treatments, surgeries - that I just dealt with, putting my head down, is catching up to me and I realize how not normal everything that happened was. (Why do I feel like I have said this before? Oh? I have? Right... moving on!)

Anyways, the big hair metaphor: Here I am with a short haircut... It's cute, I kind of like it, but I know it's not very "me". I don't feel like myself yet. My short hair isn't something that necessarily bothers me daily, but every once in awhile I catch myself in the mirror and think - who's that girl?

So, a bigger metaphor for my life right now: the transitional phase. I'm happy, I love my life, but I still don't feel like I'm back to normal yet. I know I will move on, and I know it will be different (just like my hair, which is choosing to be brown and my hairstylist said she thinks it will be CURLY!). I'm just not there yet. Neither is this mop on my head.

Anyways, Happy 2015 to all of my family, friends and followers. I love you all and I am so grateful for all of your support this past year. Instead of remembering how shitty this last year was, I choose to remember all of the love that surrounded me, the body that fought for me and helped me to grow strong once again, and for having such a great family to fall back on every time I felt like it was too much.

The only resolution for 2016? Last year I said it was "Get Healthy". This year it's....

(Thanks @gilmansteph for the photo!)

Cheers!

xx

Sam