What an odd and heartwrenching time it’s been of late…
My father-in-law passed away on January 17th. Just before his 77th birthday, which would have been on the 19th. As I’ve mentioned in previous posts – he was sick for a while – he had cancer as well. We got to the hospital just after he passed. I felt odd and sad that I couldn’t say goodbye one last time. But really, it wouldn’t have been how I hoped or imagined. So what I remember now is the previous time I saw him in the hospital – a few days earlier – when he told me that he always saw me more as his daughter than daughter-in-law. It meant the world to me. He was a beautiful, special, kind, wonderful man. And it breaks my heart everytime I remember that I won’t be able to see or talk to him in this life. It breaks my heart to see how it’s affected my husband, his daughters and the rest of the family. He was always there when anyone in the family needed him – including me. He even walked me down the aisle when I married his son, because I asked. I remember him being so nervous. It was cute. 🙂 Here is another photo of us on that day. I will forever miss his presence, his voice, his smile. Until we meet again…
Apparently it is World Cancer Day – As far as that goes for me – I saw my oncologist today and he said my platelet count is very low. Just about at the point of requiring a blood transfusion. I have to go back to the clinic on Wednesday for more bloodwork, to see if my platelet count is on the rise or going down. I was supposed to be starting my next round of chemo but I have to wait to see how things go. I hope and pray that I’ll be able to start it still this week.
Admittedly, I’ve been thinking a lot about death lately. With the passing of my father-in-law, it became more real to me. Over the past little while I’ve focused more on it. But I don’t want that to be my focus. I want to live! I believe I will, for a long time yet. Because, why not?
A few weeks back I decided to take some pics of how I was feeling. They may seem rather dark. But that’s just how I feel sometimes. My hair isn’t really growing and I have a giant scar now. But this is me – for now anyway. For World Cancer Day I wanted to share in visual form what I sometimes feel like. But I am looking to the future too and intend on doing more photo shoots that show the other side of me. It’s just taking me some time to get there. 🙂
Steph and I are also planning to record a couple of original songs in the near future. The one is called Beautiful. I wrote it about someone I love deeply that has always had a hard time seeing themself as such – inside and out. It’s something that so many people – myself included – struggle with. Something that I especially struggle with now. It’s a song of love and encouragement. I’m excited for us to finally record and share it!
The last update I did – other than my Christmas song – was almost a month ago. And it was a good day. If I’m honest – there’s been some good and bad since then. I want to be honest, so here’s the good and the bad. To start – the increase in my chemo dosage really sucked. More tired, more nauseous – and I actually missed a couple of days at the rehab gym because of it – which does not help with my current goals.
I also got a phone call on December 21st from the genetics clinic. Because of my family history, and my current situation – they felt there was a 90% chance that I inherited Li-Fraumeni Syndrome, so I was tested. My mother has it, and it was passed on to my sister, and in turn passed on to one of my nieces. I always felt that I would be different. What this means is that I have a predisposition to a wide range of certain, often rare, cancers. This is because of a mutation in a tumour suppressor gene (TP53) – meaning that my body is lacking the ability to prevent malignant tumours from developing. I am highly susceptible to developing multiple cancers in my lifetime. I never really wanted to know what my chances were of getting cancer, but I figured that once I beat this brain cancer – I wanted to stay on top of anything else – so I got tested… and I failed. Knowing I have the gene doesn’t make it easier – it’s actually made it more difficult mentally. But, I start to get tested frequently for signs of other cancers, and the survival rate of early detection is remarkable. I already knew that this type of brain cancer meant a fight for the rest of my life – but now the fear of other cancers hanging over me… I like to live to live. I am not going to let this take away from my life. It might be tough to deal with mentally right now, but my life is NOT going to be about cancer and death!
I had a great Christmas, and there was a lot of family around. My father-in-law was there – that was especially moving. His cancer diagnosis came shortly before mine. They say mine is “incurable”, but his – there’s nothing more they can do. I watch him, and he watches me – and we both feel powerless to help each other – but the love, we can feel. We ask the same questions about life and death. Sometimes he’ll talk about his fears, and his hopes – and then he’ll just suddenly ask me how I’m doing. And he’ll hold my hand and help me to be strong, and not afraid. One of the greatest men I’ve ever known.
That may have sounded more bad than good – but that’s just the way it sounds if you don’t read between the lines. There is hope – and love – and strength. There are family and friends – dreams and desires.
This is kind of an outtake from my appearance in the movie ChristmaZ. I was asked to sing a lullaby – and I remembered this one that my mom used to sing to me. It seems right – right now.
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!
Getting used to my new self. I’m not there yet – but I’m on my way.