My Year With a Hot-Ass Whiskey Voice

(Because what better way to start a post then with a smiley muddy dog?) 

I thought I would post a little update since it's been awhile. 

I am very grateful to still be feeling good - some fatigue but mainly feeling like myself. When I say myself, I wonder what I'm referring to - because I definitely don't feel like my old self, but I don't feel terrible  either so I guess this is my new normal. I see a lot of other posts in the support groups I'm a part of, and so many aren't able to lead active lives so  every day I wake up feeling good I remind myself of how grateful I should be. 

I've been on chemo now for about a year and a half. It's the anniversary of the discovery of my brain mets, and I'm happy to report this summer is shaping up to be much more promising then last. 

Back in January, I lost my voice. It slowly faded out until it turned into a 'hot-ass whiskey voice' (as it was referred to by an author at Writersfest). After about 3 weeks it still hadn't come back, and I started to get concerned. Not to mention, it was the hockey playoffs and the Leafs were playing which meant it was very hard to hear me speak whenever we went to a bar. I like to chat so being mute is very annoying and people usually ask "WHAT??" once or twice and then they usually just nod and pretend they heard me. I'm not sure how many times I have been asked "Oh no! Are you sick?" or told "You should take lemon and honey in hot water!"/"I know this Chinese herb man that will concoct you a batch of death that will make your voice come back immediately"/"visualize your vocal chords healing and they will come back to you!!!!!" (Okay, that last one I only got once). 

I feel like it would be inappropriate yet satisfying to just respond with "Nah, it's cancer", but I haven't reached that low yet. 

After a long wait, I was sent to wait for an ENT (Ears, Nose, Throat specialist) and it was about 3 months waiting time. I felt like I was the only one who seemed concerned or felt like this was a little odd, but no one was pushing the appointment so I just kept on navigating my new life as a mute. I thought I may have damaged my throat somehow from throwing up so often, but I wasn't sure. 

I finally saw an ENT in April, where he put a camera through my nose and down my throat (it was terrible). I gagged on the doctor multiple times before he was successful and was able to easily see that my left vocal chord was no longer working. 

His speculation was that it may be from my brain radiation - whenever you treat the brain, there's no telling what you can affect. There didn't appear to be any lesions or tumours near my lungs on my last scan that would be causing something like this, so this seemed like a reasonable explanation.  

From there, I was sent for a catscan of my throat. I'm not sure why this wasn't done earlier - *eyeroll* - but with those results we found the culprit. 

Jeff can explain it better then I do, but basically there are new tumours on my lungs that are growing/blocking/damaging my vocal chords. I guess they were too small to see on any earlier scans but are now visible. 

The cancer was growing and spreading which unfortunately meant that my treatment had failed and my time with Herceptin was over after only one short year. Onto the next one. 

I have since been put onto Kadcyla (or TDM1), which is a drug that was approved only a few years ago but has seen great results with hormone positive breast cancer. There have been inconclusive studies that show that this type of chemotherapy can also cross the blood brain barrier. I am most anxious about progression in my brain, so I was happy to have this as my new alternative. 

As for my throat? We were hopeful the new chemo may speed up the process and the tumours in my lungs may shrink and give me my voice back. It doesn't seem like that's happening (I've had 3 sessions), so I am going to go ahead with a procedure where they insert a needle through your throat and into the vocal chord, giving it a Botox-like treatment. It will plump it up and strengthen it and hopefully my voice will come back. If not there are options for surgery, but that's down the road. 

While the Herceptin was failing, I wasn't sure what was happening in my brain. I've been feeling good so I had been hopeful. My last scan three months ago showed one new spec - too small to be determined as to what it could be. I had another MRI just a few weeks ago, and it showed that while all previously treated lesions were either smaller, stable or completely gone, I actually had 2 new spots and the spec on the last scan had grown. 

So, here we go for round 2 of SRS (stereotactic radio surgery), or brain radiation in plain terms. They seem to think I can get by without steroids which is a major win for me. I'll be at the General hospital tomorrow getting blasted (I like sour cream glaze timbits, if you're around). I can't decide if I should bring Devil Wears Prada or Country Strong. I'm thinking of asking my technician to take a picture of me when I'm all strapped in so stay tuned for that. 

As for life updates? I like to keep busy when I'm feeling good and I had such a doozie last summer that I am hoping to make up for it! 

Jeff and I went to Field Trip music festival in Toronto, went on our honeymoon (finally!) in Mexico, helped our friends move into a new house, went to a few Jays games and had some quality pool time. Jeff's grandparents had their 60th wedding anniversary, I attended a baby shower, planned a baby shower, and now my bestie is expecting my new nephew any day now! (#babywatch2017)

You're Welcome. 

I miss my old life sometimes so much that my chest physically hurts and it feels like someone has punched me in the stomach. I feel like I look around constantly wishing I was someone else (more like, I wish this wasn't happening to me). She's probably on her way to work, look at that cute family, I remember when I used to be able to do yoga.

When this happens, I try and remind myself of how great it has been to be free of a schedule and being able to say YES when my nephew asks me to go to his elementary school presentation, YES to a week of sleepovers at my besties new house, YES to impromptu ice cream dates with friends and time spent with family. YES to sleeping in, YES to reading until 3AM, YES to doing whatever I want, whenever I want. This time is so special to me, and I know one day when I may not be feeling the best I will look back on it and smile. 

It's funny because I think some people wait too long to get excited about life and all the opportunities we've been given - I'm constantly overwhelmed yet excited by all the things I want to learn and do - and I bargain regularly, begging; please God, give me more time. I need more time. 

Anyways - for today, that's all I have to say! I promise you a picture of me in a scary radiation face mask in my next update, and until then - wish me luck!! 

xx 

The Missing Piece

 

Today it dawned on me that I have spent so much time forcing myself to accept my life with stage IV cancer that I started to convince myself that this was the end. 

I have spent so much time exploring my mortality, coming to terms with what it means to die, understanding and deciding my thoughts on afterlife. 

I became fixated on the idea that I am terminally ill, that "I have cancer". 

I scoff at those that pray for hope, insisting they're prolonging their pain, not coming to terms with their reality.  Today I saw a girl with cancer say "It is all going to be okay". For some reason, it stuck with me. I think it's the next piece of my puzzle. To come to terms with a harsh reality, make peace with it, and then say "I can still live.." 

I am letting the beauty back in. I am allowing hope, ever-so-slowly, to become part of my life. I am praying for more then days-weeks-months. 

Acceptance. Peace. 

Hope. 

xx

But Today Is Not That Day

 

It's Wednesday, April 12th and I am sitting on the couch, watching my husband play FIFA on the X-Box and Mavvy is snuggled up on the couch. We're probably going to have pizza for dinner. If you were Jeff, you would probably look up and see your wife with a full (albeit short) head of hair, eyes on the computer (are those lashes?), some colour on her face and a smile that might even seem genuine (maybe even a little mischevious, because little does he know, my online shopping cart is full...).

Tonight we're probably going to watch Homeland, and I'll fall asleep listening to Outlander as an audiobook (someone convince me that these 32 hours of my life will be worth it).

One day, I'm going to die.

However, today is not that day.

I realize I left my last post on a bit of a somber note. I remember dreaming of the day I would get to write this post. 

The days in January and February are a blur to me, each one bleeding into the other. This is what stands out:

- Jeff coming home from work one day at 5:30 PM and I was still in bed. All of the lights were off, I cried all day. 
- Going to my parents house, opening the closet door and seeing my old baby blanket. Picking it up, holding it to my face, falling to my knees and sobbing for hours.
- Googling "blogs on depression", "how to overcome depression", "teaching yourself mindfulness", "how to cope with terminal cancer" etc - praying that the internet would heal me.
- Taking the bus to the Ottawa Integrative Cancer Center to go to yoga therapy. Feeling VERY proud I was doing something good for myself. Getting lost. Getting off in the middle of nowhere. The Center calling and telling me "not to bother coming". More crying. 
- Sitting on the couch and trying to watch Jane the Virgin. Thinking I was having a heart attack. Realizing I was having a panic attack. Cry. 
- Sitting on the floor of the cottage, where I vomit for about 25 minutes. I don't have the energy to pull myself up again. Wondering all the why's.

I wasn't able to relax. Ever. My mind never let me have a moment of peace. The only times I felt I could escape was when I was sleeping.

I never thought anything could actually be worse then the physical side effects that I had from cancer. That, however, was before I had been diagnosed with severe depression and anxiety.

Here are a few things I learned firsthand while going through this.

1) People don't understand mental health.

2) Mental health is not recognized with the same severity as any other illness.

I remember talking to my mom on the phone one day, through muffled sobs, saying over and over: "W-w-w-w-hy doesn't a-a-a-nyone want to h-h-h-elp meeeeee!!".

I had called the phycho-social department of the Queensway hospital. I called the Ottawa Integrative Cancer Center. Friends gave me the names of this therapist and that therapist, try this person, try that person. I called them all. I e-mailed them in follow up. I didn't get any answers.

The benefit of the hospital is that it is free, but the wait times to see a phychiatrist at the Queensway was about 8 weeks. Even then, she can't see you regularly. 

The OICC didn't have any availability. Their therapists were fully booked.

I never heard back from the General, or the multiple other practitioners I tried to reach.

At this point, I was getting desperate. I didn't know what to do. I called the Queensway and told them I URGENTLY needed care. No, I wasn't physically ill, I answered. I need to talk to someone. I'm desperate.

They called me and I spoke to the social worker (not sure that is the right term for her - maybe she was just a counsellor?) that they have readily available. I poured my heart and guts out in that room. At the end, she looks at me and says: I'm SO sorry for you *patronizing voice*. Dr Wilson is fairly busy. She has about a 6 week waiting period. I can book you in for a consultation with her in about a month and a half?

After telling this woman my story - darkest thoughts, raw emotions - I knew I reeked of desperation and I needed urgent care. I wasn't in a good head space. With her response, I cried and became VERY upset. I said - I can't wait 6 weeks. I need help. I need help now.

She looked at me again and said - "Oh. I'm so sorry. I didn't realize it was quite so bad."

I'll never forget someone looking me in the eye.  

Not. So. Bad.

Not.
So.
Bad.

I didn't realize it was quite so bad.  

I mean. Not to feel sorry for myself, but if you heard my story would you think it was NOT. SO. BAD? 

It was here I not only started to feel sorry for myself, but for anyone that has tried to reach out desperately for help with their mental health.

If I, a terminal stage IV cancer patient, can't find the resources to have someone help me. I don't know who can. 

I left that appointment feeling defeated. When you're so stuck in your own thoughts, it really seems as if it is never going to get any better. I remember vomiting one morning and texting a friend saying, I hope this thing takes me soon. I was serious.

The OICC called me a few days later and said: our phychologist has agreed to take you on at her private practice.

I wasn't sure what that meant but all I said is "when" and "where". 

I spoke with Jennifer soon after and was able to meet her at her Glebe practice. Unlike the social worker at the hospital, she started off by speaking to me. This was a relationship, I slowly learned. A conversation. She asked me questions. She made meaningful remarks. She validated all of my feelings. Then, at the end, she hugged me.

I left that appointment and felt like I saw the sun for the first time. There is something to be said about dumping your baggage on someone else's porch. Someone who doesn't know you. Someone whom you don't feel burdened speaking to. Someone who won't judge those thoughts in the somber corners of your mind. One session doesn't fix everything, but I think that this was the start of healing for me.

I made an appointment to see my family doctor at her recommendation. While I have incredible, brilliant oncologists, they were not cutting it when it came to my mental health. I had suffered for far too long, and my mental health was not a priority to them. 

Dr. D has been the doctor in my family since my sister and I were children. When I was diagnosed with Stage IV, we had a misunderstanding, and in turn, I stopped going to see her. This time, though, I needed someone who knew me and my history. I needed someone to prescribe me some drugs. 

When I asked her for them, she actually said "I'm surprised it took this long". 

About 4 weeks later, I was able to see the psychiatrist at the Queensway. Seeing a phychiatrist as well as a psychologist was important to me, because a phychiatrist is able to evaluate and prescribe medication. As I nervously read a pamphlet on "How To Treat Nausea", a petite woman with a small frame and glasses comes out to get me. I'm always so blown away by unassuming women that hold magical superpowers up their sleeves. My phychiatrist not only listened to my story and took notes the entire time (even if all she was writing was blahblahblah, it made what I said feel important), she stopped me every time I talked about any physical ailment I had. Nausea, insomnia, acid reflux. All things that everyone else had left me to deal with on my own, all things that every one of my other doctors brushed off to the side as a "cancer side effect". She wanted to know why, when, how often all these things occurred. I left her office with some medication to try and a brighter overall outlook on life. I felt like someone had actually listened to me.

 

I started taking half of this seemingly tiny and worthless pill. She told me I may benefit from it due to its side effects; increased appetite and decreased nausea. Three days later, my nausea had disappeared. After throwing up every single day for over 5 months, I woke up and felt...normal. With the nausea gone, I was able to start to eat again. I was even hungry! By eating, I had more energy! I could stay awake for a day without having a nap, I could watch TV past 9 o'clock! Since I wasn't napping during the day, I was able to fall asleep at a normal time!

And with that, the cycle was broken. I started feeling like a functioning human being again. I started having desires to leave my apartment, regained interest in hobbies and activities I used to enjoy, and had energy to follow through with social activities. 

After my last set of scans came back inconclusive ("well it looks like it could be worse, but we're not sure" is basically what I heard), I started thinking about how this is the most normal I have felt since I was diagnosed with breast cancer. I looked at Jeff and said - we need to go on a fucking vacation.

So, a week later we found ourselves on a plane to Mexico. I didn't tell any of my doctors, I don't have any travel insurance - all of that was a future Sam problem. I was going to go to Mexico with my husband and take a well-deserved honeymoon.

One day, I am going to die.

Thankfully, it was not that day.

I've started thinking long-term again. Planning things. Having something to look forward to has been my key to moving forward. I used to feel like I couldn't - shouldn't - plan anything, in fear that I may not be well enough to attend. 

I can't attribute everything to my phychologist and phychiatrist, because naturally, the medication likely altered those brain chemicals and started sending me happy vibes. Yet, talking to someone - someone not in my inner circle - someone that was unbiased, didn't know me, someone I didn't feel like I was burdening with my sharing: that made the difference. Realizing I have a reason to be sad; my suffering is justifiable. I have a reason to be mad; my loss is indescribable. I can continue to be these things, but I have to make peace with them. I need to make peace with my cancer. I am trying so hard. 

Since returning home I guess I could say I have a renewed outlook on life. I don't like the way that sounds very cliche, but I feel it so strongly, this shift in my attitude. In the words of Shonda Rhimes, I'm living my year of Yes. In the words of Sheryl Sandberg, "I'm living as if I only have one year. Who can argue with that?". I want to redecorate and redesign my apartment, I bought tickets to two music festivals this summer, went to Montreal for a girls weekend and saw John Mayer. I've even allowed myself to dream about being able to see my best friends baby walk and talk for the first time. I want to see all the movies, listen to all the music, see all the people.

I know that this all sounds really positive, and I really wanted to share and emphasize that part of my recovery. I'm so lucky to have been granted this feeling of normalcy. I don't know how long it will last but I plan to enjoy it. 

That being said, it isn't to say that I don't feel sad anymore. In fact, I think I have been exploring all these complicated thoughts about life and mortality on such a deep level, that I feel more then I ever have. The feeling of loss and grief is so deep inside me now that it doesn't always make me cry anymore. It's just a dull ache, a reminder that this life was not what I had planned. 

When I feel it bubbling to the top, I try to confront it and not force it back down. I try to accept that this is normal and these intense feelings do not last. Sometimes, though, it does mean having a good cry. 

So, when I have one of these spells, I try and remember my new mantra 

One day I'm going to die, and I am so happy that today (or tomorrow, or likely the next) is not that day. 

 

xx

Sam

A small gallery with some life updates:

 

     

  

The State of Things

I've been struggling.

In fact, it's probably more accurate to say, I am struggling.

In 2015, I spent a year of my life trying to beat cancer. I always had hope. Hope, I always knew, is what will always get you through the toughest of times.

I was in remission for only a few months when, one day in my office, I got the dreaded call. The one that told me the cancer was back. Not only was it back, but this time, it was incurable.

It's been almost a year since my re-diagnosis. The hardest year of my life. I struggled greatly, suffered greatly, and most times, privately. From the outside I think I did a good job at pulling myself together but on the inside I feel all rotten. 

I remember my last "normal" day. Sitting on the deck with friends, wondering what Whole Brain Radiation would do to me. Enjoying the sunshine. Watching the dogs play. May 2016, and I haven't felt quite right ever since.

It's been nine months now. I've spent the better part of the last 4 months getting sick every morning, sleeping my days away. I would wake up, go to work, sleep the rest of the afternoon. Have dinner with Jeff, go back to bed and then do it all again.

This January, I knew I was coming up on my one year "cancerversary" of living with metastatic breast cancer. Knowing median survival rates, I knew that time wasn't always going to be on my side. I wondered, if this was the last year of my life, is this how I want to spend it?

The answer, as you probably guessed, was no. I took a leave of absence from my work at the beginning of January. My "retirement", as a friend put it. I wasn't sure what I would do with my time, but I figured it would be filled with friends, books, long walks and getting the chance to finally do all the things I love.

The first week of January came around, the hustle of the Christmas season over. Everyone was going back to work, and here I was, at home. I spent a year off during my first bout with breast cancer, but here's the main difference: back then I saw an end. Back then I had hope. Now, I wasn't sure what I had. I had an indefinite amount of time ahead of me, with no structure or purpose to my days.

This month, I've spent a lot of time lying in bed. I think, well I could get up, but what's the point? Everything I was doing to fill my days seemed just that: wasting time until the inevitable was going to come. I am waiting to die. 

I catch my mind wandering to the dark places. Often it will be a holiday or a joyous occasion and I'll think, is this the last time I'll experience this? When someone is planning an event in the future, my immediate wonder is - will I be here for that? I get sad thinking about all of the books, music and movies I'm going to miss out on. The milestone moments that are so special that I won't be present for. 

These are heavy thoughts. These aren't things I ever wanted to say aloud, or share with anyone. I've kept them in for a long time. Day after day, the anxiety to get up and live "normally" became harder. Just getting out of the house was difficult.

I wear a number of hats. I'm a daughter, a sister, a wife, a friend. I didn't realize that one of the hats I wore though, my working hat, gave me so much purpose. I placed a lot of value in my work. It showed me I am still moving forward, accomplishing something. I don't have my work to occupy my mind and time anymore. It had been a crutch, something I could dedicate myself to. It stopped me from truly accepting my reality. I allowed it to take up every corner of my mind, so that nothing else could surface.

I don't have an answer or any wisdom to share today. It would be easy not to post this and wait until I'm on the other side. I debated it. These raw feelings aren't easy to confront, much less talk about. They are real, though. Cancer can be seen as purely medical side effects. Yet there is another side of cancer, the mental battle, that is proving to be equally as difficult. I haven't overcome my bout with anxiety and depression but if there is a positive side of this, it's that I know I don't want to feel this way anymore.

I know I'm ready to find a new normal. I know it involves acceptance, gratitude, and self-worth. I'm just not sure how to get there. I'm ready to not only enjoy my time but to feel like I deserve it. I'm ready to feel worthy of this life, worthy of a sense of purpose. I am not just here to die.

Anyways, that is where I've been and where I'm at. Thank you to everyone who loves me and supports me every day. I owe everything to you (except Mavvy. I need to keep him).

xx

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!)