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