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Tuesday, July 4, 2017

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 


Monday, June 12, 2017

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

Saturday, April 22, 2017

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:

 
     
  

Thursday, February 2, 2017

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

Monday, November 14, 2016

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