I wanted to post something new. So much happened so fast, so early on – And now it feels like it’s dragging. I think way too much about my brain and what it’s doing. So much happens and keeps happening. I think I’m at the point that I don’t know if I can breathe – not physically – but just so much.
I waited so long for my post radiation MRI. It was terrible. I’ve had a few before. I thought – no problem. It was a problem. I panicked through the whole thing, but didn’t stop it because I wanted it over and done. It’s two days later and I’m still kind of panicking.
I did start my program at Well-Fit at the University of Waterloo. I want to feel myself again, and the physio program they set up for me – I can already feel it in my muscles. I love that feeling! I’m doing something – I’m fighting.
I’m depressed. Maybe it’s my hormones. Things are changing – I haven’t had a period since August. Maybe it’s just this f*cking thing in my head that I want to kill so bad – and I feel helpless.
Maybe that’s why I haven’t posted for awhile. This is a stupid fight that just pisses me off and I feel so f*cking helpless, no matter how hard I fight – and I’m fighting so f*cking hard!
I named this blog the way I did because I don’t wear a wig or something to cover my head, and people look at my scar – and the bald side of my head – I just always want to say it’s okay to look, and I want to answer their question – “I have brain cancer” – This is life. My life right now. I don’t even know what that means to me – not yet.
I wait for someone to tell me that they’re going to fix this and stop telling me they can’t. I wait – and live. And Christmas is coming – and we got the calendars for the girls – and the music of peace plays. The tree is bright and flickering and Cleo loves it way too much, as usual. So much, so beautiful. I love my life!
We had an interesting day today, that had a bit of a twist. Initially we were planning to go for a bit of a drive – maybe grab lunch – anything to get me out of the house. The week since my radiation finished has been a little tougher than I had hoped. I know I’ll never be my old self – but I’m looking forward to my new self, and I’ve been working hard for that. However, I still tire easily and it takes a little more effort than I thought to keep myself going. I’ve been trying to get out more, and today – I really needed to get out! So we were going to go for that drive, and I changed my mind – Let’s go for a walk. When Steve and I go for walks now-a-days we set destinations, so I can set goals and pace myself. I miss the days of just the two of us walking and walking, and not caring where we were going or worrying about when or how we’d get back. But that’s another story. Today we set a destination – the liquor store – but before you judge – there was a reason that went beyond alcohol. I haven’t had very much to drink since all this started happening. A glass of wine here and there. My favourite drink used to be Forty Creek Whisky. Steve’s a beer drinker, but around the holidays he likes to have his CC. So – it’s snowing around here, and we lit the pine scented candle, and we talked about Christmas – and we realized, our bar is very poorly stocked anymore. People come to visit to bring flowers and give me hugs – Nobody comes for shots and to let loose. We decided to head to the liquor store to make sure we had Forty Creek and CC for Christmas. That’s actually a very sentimental reason – ask anyone that knows us. We set out on our walk. It was so nice to put on a warm coat and hat, and walk in the cold air. When we got to the store, Steve grabbed his CC and I went for my Forty Creek. I was grabbing the bottle and Steve said – “You get a free glass with that. That’ll replace the one you broke”. I broke a glass a couple of days ago, so we thought that was nice how things worked out. Then we walked home. We left the bag on the kitchen floor and went on to other things. Steve eventually decided to put the bottles in the bar – and he opened the box that was on top of the Forty Creek bottle.
This is the box.
And this is the glass that was inside.
Steve showed me and we laughed. For those that don’t know – Hamilton is where I had my brain surgery, and where I had my radiation, and where I will continue with my chemo and any other treatments. We had no idea what the Forty Creek promotion was supposed to be, but Steve saw the “Forty Creek – 29km” sign and figured it had something to do with Forty Creek being so close to Hamilton.
Then we read the back of the box.
35 cities, and I picked up “Hamilton”. Then Steve looked closer at the glass.
This is an outline of Hamilton on Google Maps.
This highlighted area is approximately what appears on the glass.
That’s this section of Hamilton.
This is the route we take to get to my appointments at Hamilton General – and where I ultimately had my brain surgery.
This is the route we took everyday for six weeks to Juravinski Cancer Centre for my radiation, and where I’ll go for any future treatment.
Today was the day of my last radiation treatment. It didn’t go as planned. I forgot my pills, and half way to Hamilton we had to turn around and start over again – which made me late for my appointment. Steph and Haley came with Steve and I. My family. It couldn’t have been better. The drive there – the ringing of the bell – the drive home. And then we all went to a restaurant that none of us had been to before – and we celebrated. Sure, there’s more fight to come – but today – we celebrate!
Well… another week of radiation complete! I’ve been feeling quite a
bit more burned out and exhausted. I don’t feel comfortable in my body
for various reasons. My face and neck are even more swollen now from
the steroid etc. But, only 6 more radiation treatments! It can’t come
soon enough… Then I get my month break and hopefully I have less
pills to take and I can work away at getting to where I desire to be
with my “NEW” self. I crave a semblance of normalcy – to remember what
I used to feel like. Though I know it will always be different now – I
still believe I can find a fresh contentment in myself. I can be even
better! I mean, this whole situation has changed me in so many ways –
physically, mentally, emotionally, psychologically. Going forward my
life and perspective will never be the same. And that is OK. I can BE
and live my life however I choose – it’s all mine to do with what I
In other news, my incredible husband Steve bought me a punching bag
and gloves! (Pic below!) It turns out that having a brain tumour can
really bring about a lot of rage and frustration. Who knew? Lol I’ve
started using it a bit and it’s really freeing! I’m going to add it to
my regular workout routine – which has been a slower process than I
would like. But I’ll get there. 😎
Steve and I did a photo shoot together last week for Halloween. He is
in the shoot too. 😁 I’m so proud of the work we did together! It
wasn’t easy for me with how I was feeling but I so much wanted to do
it. Steve did a gorgeous job with the editing. It’s called “Forever
Ghost”. It’s a love story. I included some of my favs here. My
absolute favourite is the one of us in the crystal ball. It’s a
reminder to me that no matter what happens we will always be together
– forever! 🖤🖤
I’ve been struggling with an update lately. I mean, the basics are easy. So I’ll start with that. I finished my second week of radiation on Friday. It went as well as can be expected. I have a 3 day weekend off from driving to the cancer clinic as it is Thanksgiving for us tomorrow. I do take the chemo pills daily though on the weekends. My head is still uncomfortable or worse most of the time. And a new development is that my legs and knees get severely sore mainly at night and in the early morning. I’ve been trying to be more active but it’s been difficult because of my head pain. Before all of this I was working out for at least 2 hours a day. And now my body is not understanding what’s going on so it’s fighting me I guess, as I attempt to get back into things. Hopefully this part gets better soon. To try and help more with my head pain and the swelling from the radiation, I’m now taking more of the steroid I’ve been on. Unfortunately, this med makes me wired at night so I’m not getting nearly as much sleep as I would like. Also, it makes me feel hungry all of the time which really sucks. I know I have put on a bit of weight which is hard for me, but I suppose it’s better than wasting away. Still, it’s been another struggle. I did hear a little bit about the pathology reporting so far. The cells haven’t changed enough in one particular direction yet to determine the exact type of tumor and it’s grade. But they said they are treating it like it’s the worst – Glioblastoma Multiforme. It just means the treatment remains the same. Also, I have my MRI booked for December 4th. This is the one that will show where things are at after the 6 weeks of radiation/chemo and then the one month off. I’m glad to have a date but at the same time it’s scary…
I know some people want me to be super positive at all times, to be strong, to be a fighter at every moment of the day. I understand it is all well meaning. Of course people don’t want to see me suffering and being down in the dumps. And really, I wouldn’t say I am down in the dumps per se. But I am thinking and feeling A LOT! I want to clear up one thing too – Yes, I had surgery. But it was only to remove a small part of the brain tumor – to debulk it a little bit and also to do a biopsy. I’ve been getting a lot of people saying they hope I’m feeling better. But the reality is that I still have a giant cancerous, incurable brain tumor in my head. Incurable doesn’t mean I’m going to die right now. But I have flat out been told that unless I get taken out in some other way beforehand, this cancer is what is going to get me in the end – whenever that end may be. I’m hoping and praying for at least another 20-30 years. I still believe that can be! I believe in my medical team and the treatment and that they are doing everything they can to “fix” me. I also believe in my God and His power to bring me through this. And I also do believe in myself!
As far as the mental, emotional, psychological side of all this… It’s been REALLY, REALLY hard. I watch my husband and the hurt and helplessness, the fear that he goes through every day. I see it in his eyes so much of the time. I’m afraid too. Afraid of the unknown. I want answers but there aren’t any that anyone can give me as far as an outcome. I see the fear and hurt and not knowing how to deal with this, in my family. Steve, Steph, Haley, my mom and my sister. And I understand it because I watched my mom and sister fight breast cancer. And I’m currently watching my father-in-law also fight cancer.
In case anyone didn’t realize, Steph Dilts, my Pristine bandmate is my husband’s daughter. But she is so much more than that to me! She is my best friend! She came over last night and we worked on music together. It was so amazing! We are going to record a song we had been working on for a while and also do a video. I am excited! But she, like Steve, doesn’t know what to do with what’s happening to me. The reality is that no one really knows what it’s like to be in my body and to feel exactly what I’m going through mentally, emotionally, physically. And I don’t always know what I feel either. From the day I found out I had a mass in my head my life has completely turned upside down. There isn’t really a moment where I forget what is happening to me. I want to feel “normal” again – but I can’t remember what that is now. This stupid brain tumor has taken over my life, my husband’s life, his daughters, my family. We all feel and it’s not super-posi all of the time. It just can’t be. We are going to have our moments – and lots of them! The pictures below are of my family with my husband and his two girls – Steph and Haley. We’ve been a family for going on 18 years. And they mean the absolute world to me! I desire to live and to not see them go through the hurt of losing me. That thought is much more difficult for me than the idea of death itself. Though that is not far from my mind either. It’s difficult not to think about it truthfully.
But – I’m not dead yet and I’m not done! That is how I feel too. I want to continue on in the things I’ve been working at in my life for so long – Music, Modeling, Acting. These have been my passions and I want to create more. But I also feel a pressure that I’m putting on myself – a feeling of needing to “leave” something more on this earth. This mentality has been a struggle for me. I want to just do what I love as best I can and have that be enough. But I also want to not feel guilty about just spending time with my loved ones too and not having to always focus on a “legacy” if you will. I am going to get through this! See – I am still being positive. Don’t worry ;P I just felt I wanted to be more honest and say that it’s not been easy by any means – in so many ways.
If you took the time to read all of this – thank you. 🙂 I know I have so many people praying and rooting for me. Please know that it all means ever so much to me! xoxo