Happy Belated Thanksgiving!

Sorry guys, I am a little late. But better late than never, right?

I just didn’t want to give up the opportunity to wish all of my loyal followers a happy belated thanksgiving. Hopefully you all enjoyed a wonderful weekend with family and delicious food. I certainly did.

In the spirit of the season of gratitude, I wanted to point out some of the things that I am grateful for over the last year.

I am thankful for my adoring and amazing hubby,

I am thankful for my loving and fantastic parents,

I am thankful for my brother who always keeps me on my toes,

I am thankful for my awesome and kindhearted in-laws that rock,

I am thankful for my wonderful family and friends who are always there for me,

I am thankful for the medical system we have access to,

I am thankful for the doctors that won’t give up on me,

I am thankful for my neighbour and my best friend’s mom for making me great little caps to wear since I lost my hair,

I am thankful for my best friend Julie as she comes over and feeds me,

I am thankful for my cousin Sandra and all the mani’s and pedi’s,

I am thankful for all my amazing blog followers,

I am thankful for the kindness and generosity of strangers,

I am thankful for everyone who generously donated towards my treatment,

I am thankful for my friend Sharon for starting a fundraising page for me,

I am thankful for the daughter of a friend of the family who decided to pass on having party favours for her confirmation and instead gave the money to me for my treatment,

I am thankful for chocolate croissants,

I am thankful for my favourite TV shows as they keep my night time TV obsession alive,

I am thankful for delicious food that makes me happy,

I am thankful for the peacefulness and tranquility of the cottage,

I am thankful for fall fashion, I mean who doesn’t love boots and pretty sweaters?

I am thankful to all those that work very hard to make things organic and natural,

I am thankful for being able to share my story publicly,

I am thankful that my brain still functions, well at least kind of,

I am thankful for everything that still works on my body,

But most of all, I am thankful to be alive in order to enjoy another Thanksgiving 🙂

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THANK YOU!

Health, love and gratefulness.
xo

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Looking for Li Fraumeni Peeps

As many of you know, I have been living with Li Fraumeni Syndrome (LFS). It is a rare genetic cancer disorder that predisposes affected individuals to certain cancers over the course of their lifetime. Many, like myself, will be faced with multiple cancers, some even at the same time. Living with LFS can be frightening and isolating. Since the condition is so rare, it is often difficult to find others who share your story. We are a delightfully unique bunch.

I have been bouncing around ideas in that little head of mine to create a LFS group. I would like to hear from individuals with LFS, their affected families and caregivers if they would be interested in such an adventure. Either an online group or a group that meets in person once every month for those in the Toronto/GTA and surrounding areas. 

You can either comment on my blog or reach out to me privately through the contact page on my blog and we can chat via email.

Looking forward to hearing from all of you.

Health, love and mutated genes.

xo

My Romantic Weekend In Emergency

So for our second anniversary, Garrett and I planned a trip away for the weekend. Instead, we ended up spending the weekend in emergency. Very romantic. I was tied up to bags of IVs and could barely move, people were screaming and shouting in the hallways and someone would show up to poke me for blood every so often. Yes, very romantic indeed.  

How did this craziness come about, you might ask? Well I had a fever the night before of 40.1 and apparently when I went to the clinic Friday morning for my usual treatments, my pulse was too high so the girls suggested I go to my family doctor. I quickly was able to see my family doctor who was also frightened by my pulse. He suggested I go to emergency. There I was thinking, okay people but we really have to speed things up here because I have to get ready to go away tonight. Have some last minute things to throw into my suitcase. I was in for quite the shocker.

I gave up on the weekend when I was admitted to the hospital that day. They set me up on their stretcher bed which was crazy uncomfortable to sleep in. But who am I kidding, who can sleep in emergency anyway without narcotics and being knocked out. I spent two nights in emergency before I was transferred to another floor. I ended up spending ten days in the hospital.

They ran all sorts of tests to determine where the fever and high pulse were coming from. They even shoved something way up my nose to ensure I didn’t have the flu. No flu for me. Seems pretty barbaric though. What was bewildering was that my hemoglobin which had dropped to 76 ended up further dropping to 42 overnight. This is where they figured I was bleeding internally somewhere. But I really didn’t have any symptoms of bleeding or so I thought. When I went to the bathroom my stool was black. And I mean black like tar. For those that are squeamish, sorry. It was one of the most disturbing things I have seen. Anyway, at that point they were considering a gastrointestinal bleed. 

One test I absolutely detest is the endoscopy. Well lucky for me I ended up having 4 of these in 5 days. Apparently the doctor said that was a record for him. He had never scoped the same person 4 times in 5 days. Leave it to me to set the record. They found a blood clot with something at the back of it. The reason to keep shoving this tube down my throat was to determine what was hiding behind the blood clot. Finally, on the fourth time it was determined to be a 4cm polyp hiding out. They thankfully were able to remove the polyp. Just waiting for the results now. The team was great, I must say. Aside from the final scope, they kept me very comfortable. I was essentially knocked out for the first three scopes. I handled the conscious sedation very well. Oh and I also had a colonoscopy while we were at it, go big or go home, right?  My colon was okay. They removed a polyp which was benign. 

The biggest issue with all the scopes was I couldn’t eat. I was on fluids for practically a week. I was starving. When I finally could eat, my throat was killing. Honestly the hospital food was looking very appetizing by that point. And when Garrett bought me a Tim Horton’s croissant, I was in heaven. Although we didn’t enjoy a weekend away, my wonderful mom made cannelloni and brought them to the hospital so Garrett and I could enjoy. 
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Now just when I thought things were settled and the issue was dealt with, we had to deal with the issue of why I was so swollen. Umm perhaps the 4 litres of fluid pumped into me the first day of emergency. I looked like the Goodyear blimp. I thought the floor was thumping when I walked.  Seriously. So this was obviously major fluid retention. However it didn’t quite explain why my left arm and freshly manicured hand were so much larger than my right. Well, to keep things interesting, I ended up with a blood clot in my vein due to a bad IV in that arm. They kept it in too long. Now I am on blood thinners to try to correct the issue. I will be seeing the Thrombosis clinic shortly to determine the anti-coagulant management. What a mess! 

I am just super happy to be home. I thought the longer I remained in hospital, the more they would find issues that needed to be analyzed. I needed to get out of there and just let my body heal. Not to mention sleep for a bit. And to think it all started with a fever.

But for the record, once I am better, that romantic weekend away will happen.

Health, love and emergency rooms.

Xo

Introducing Wanda

When people think about hair loss associated with cancer treatment they think of chemotherapy. People don’t generally make the association between hair loss and radiation treatment. And this assumption is mainly true as radiation treatment to your breasts or leg for example would not cause the hair on your head to fall out. However, it would cause hair loss in the area radiated. And therefore this is why individuals that undergo radiation to the brain will inevitably lose the hair on their head. 

I have now lost my hair twice over the course of my life as a result of cancer treatments. At the age of 3 due to chemotherapy treatments and most recently now due to the whole brain radiation that I underwent in April. 

It sucked then and it sucks now. 

Although it is much more difficult as we grow older. We are so much more attached to our hair and our appearance. Or perhaps I just had an unhealthy obsession with my hair. I loved my hair. It was long, shiny and super healthy. 

For whole brain radiation they say that the week following your last treatment your hair will begin to fall out, and that it takes about five days or so for it to completely fall out. Well, me being the exception to every rule, mine took over 3 weeks to fall out and some hair at the back of my head never actually fell out. I guess my hair is just as stubborn as me in the sense that it keeps fighting and refusing to die. 

I had quite the comb over though.

I went through various hair phases actually, anything ranging from looking like a scary white supremacist to a cute little old man with a little hair at the back and some fuzzies on the sides, and of course, the infamous comb over. Now I am at the point where there are lots of fuzzies on my head.

I guess these hairstyles helped to lighten the mood a bit. Additionally they also helped to show me that I might actually rock a pixie cut. Who woulda thought?

To be honest it was tough to see the hair fall out especially since it took so long in my case. However, I have to say that the worst part was the first time I put on my wig. I thought this was going to be fun and make things a little more normal. Instead, it felt anything but normal. 

It was this mop on my head. It felt like a foreign object each time I put it on. Very unnatural. Just looking at it made me upset. What made it worse is that I didn’t feel comfortable touching it or moving it. I was terrified of someone noticing it was a wig or having it fall off my head to end up looking like road kill on the side of the road or something. Plus in order for it to fit properly so that I wouldn’t feel like it was going to fall off, it had to be on the tightest setting. So it was squeezing the heck out of my head. And the absolute worst part is that the wig itself is beautiful. Virgin human hair in all its glory. This made me feel so guilty because I hated wearing it. Bottom line: it isn’t my hair. 

When I am home I typically keep the head bare in order to let the scalp breathe or sometimes I wear a little hat or headscarf. I only put the wig on when I leave the house to go somewhere other than Princess Margaret Hospital.

Well this past weekend I had my cousin’s wedding and although I haven’t really been going out, I did want to be at her wedding.

So I decided that I needed to make the wig my friend. And what better way to do that than giving the wig a name. You all know how much I love naming things, right? So I introduced Wanda to the world.

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Everyone cannot seem to get over how similar the colour is to my natural hair. And I think the more you wear it, the more comfortable you become in it. But it still feels weird.

I am not sure if others undergoing cancer treatments can relate to this, but for some strange reason every time I put Wanda on, I become filled with this overwhelming urge to tell everyone I see (including complete strangers) that I am wearing a wig. No clue why this happens. It’s almost as if I need to find ways to throw in that I am wearing a wig into normal conversations.

Random sales lady: “It’s been so hot outside lately, hasn’t it?”

Me: “Yeah I know. Really makes the wig I am wearing on my head right now feel very warm. You see this wig, right here on my head. Yeah that’s the one.”

This can get uncomfortable for some.

We will see how the hair will grow in. It could grow in a different colour or texture. It can also grow in sparse, in patches or with bald spots. I will be taking tons of vitamins to help strengthen the follicles, but in the end, anything can happen. I will aim to give you guys an update and some visuals on the growth process. Stay tuned!

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Health, love and baldness.
xo

A week of rest, relaxation and murder.

Okay, so you are all probably thinking that the brain mets have totally affected my cognitive abilities, but I assure you the title of this blog is correct.

The reason I have been away from this blog and all of you for so long is because I haven’t been quite feeling myself and I didn’t want to write blog after blog where I just complain and moan and groan about how unfair life is or how angry I am at the world, or how terrible I have been feeling. Not to mention that most days I  didn’t have the energy to even write a blog. I have experienced an incredible amount of fatigue whereby I couldn’t even lift myself off of the couch. And don’t get me started on having to go pee, this was a terrible interruption to my lying down all day and sleeping. Seriously, I was too lazy to go pee. All I wanted to do all day was rest. I didn’t want to do anything, go anywhere  or socialize with family and friends. I would panic if the phone rang or people came over the house.

Then there was the nausea and constant upset stomach, which all of you know I hate. Well it was back with a vengeance. I lost my appetite for most things, I lost weight and I had to force myself to eat during the day. I still struggle with this daily. Things are a tiny bit better some days now, but definitely still not the old Sabrina. I need to get back to that, back to me.

Now I am not so sure what the nausea is caused by. I assumed it was a side effect of the radiation, but of course things are a bit more complicated in my life. I can feel a bump on the right side of my stomach. I had an ultrasound done which found a 2.4 cm lesion in the muscle of my abdominal wall. It never stops with me. I need to have a biopsy done soon to determine exactly what it is. I hope with every fibre of my being that it is benign, but either way, it has to be dealt with. And it might mean more surgery 😦 If I could use a homicidal enraged face emoticon, I would. But all I have access to is this sad face one. Oh well.

Although I don’t want to do much these days, I did want to get away from everything and everyone for a while. Fortunately for me my in laws have a cottage where I can do exactly that. Just to be surrounded by nature, peace and tranquility, and to have some time alone. I truly love it there. We will try to get away as much as possible over the summer. Our first visit was this past week.

I still felt my usual nausea and tiredness up there, but it was different. Perhaps it is the fresh air, perhaps it is the sheer peacefulness of the lake, or perhaps it’s just being far enough away from my usual routine and life in general. 

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So amazing!

So now that I have talked about rest and relaxation, I will talk about the murder, as I am sure all of you are curious. 

We had to kill a mouse while we were up there. Eeeeeeeew, right?!

One night we noticed the garbage had a hole in it, so the following day we decided to put a mouse trap in effect. However, to our surprise, the trap did indeed trap our little trespasser, but it didn’t kill it. So we were forced to do the dirty work. It literally was a scene from a comedy to see Garrett and I try to rationalize our actions. Although mice creep me out (I think it’s the tail that freaks me out), I didn’t want to have to kill one. And neither did Garrett. So, like murderers, we began to justify our actions.” Just think about it”, I told Garrett. “What about if this is a serial killer mouse? Think of all the mice we are saving by killing the serial killer mouse.” It definitely couldn’t have been the Gandhi or Buddha mouse, spreading peace to all because a nice, honest mouse would not have broken into our home nor would it have engaged in any obscenities there (the bugger poohed everywhere). In a short period of time, we had become vigilantes protecting property and fighting for justice for all, keeping everyone safe from the actions of this horrible criminal mouse. We were no longer murderers. We could sleep at night now. However, I confess we killed a lot of mosquitoes while up there too. Oh come on, don’t judge us, they had it coming. We are still good people, I swear.

So this is what I have been up to the last little while. I am praying that things will improve. Looking forward to getting back up to the cottage again for some more rest and relaxation, and hopefully no more murders.

Health, love, and cottage life.

xo


Three days down, seven more to go.

And the countdown is on.

Thought I would update you all on how I am doing during my whole brain radiation. I have had three days of frying my brain and seven more to go.

The actual procedure itself is painless. You don’t feel a thing and it lasts about a minute. However there’s this really weird smell of burnt plastic in the room when the radiation comes on. I thought I was going crazy but it turns out almost everyone comments on the smell. Kids think it smells like farts. 

Another peculiar thing is that you must keep your eyes open during the zapping. Of course I had to ask why, and I was told that it is to protect my lens. Cataracts could be an issue down the road. But they said that blinking was okay. Well, you know me, I have to defy the conventions. So literally I kept my eyes open the entire time without blinking when I found out this information on the second day of treatment. The girl said “wow, I have never seen someone go that long without blinking before, that’s impressive, but you know you can blink, right?” Yup, I do.

I kinda looked like this:
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On day one of radiation I had a bit of a headache and that was it. Naturally, I figured it couldn’t be that easy. Day two and three brought on more headaches and some nausea, which I absolutely hate. Just imagine that when I had major abdominal surgery where I underwent the removal of two organs (my uterus and right kidney) I refused the epidural as well as taking minimal amounts of pain medication just to avoid nausea as much as I could. I did the same thing for my neck surgery too. That time I had the pain management team come in and scold me about four times, saying I needed the pain meds. The nurses were all in awe of my high pain tolerance and the fact that I was hardly pushing the pain pump. One day I hadn’t pushed it once. This paints a nice picture of how much I hate nausea and not eating.

Fortunately I have been able to control the nausea with ginger and ginger gravol. However I must say that a ketogenic diet is very difficult to do while on radiation treatment. Just the thought of meat and fish and a high fat diet makes me sick right now. All I am craving is carbs: bread, pasta, crackers, you name it. Garrett had a croissant the other day and I thought I was going to die of carb envy. Watching them eat bread at dinner, I literally feel like yanking it from them and imagining how good it would taste. Visions of carbohydrates floating in my head. My mom, who is awesome, has made me some organic chicken soup, and I have been good with that. I am good with smoothies and green juices, but my appetite is definitely not normal and not as ketogenic-like as it should be. After the radiation is over I will go at that full force.

As for the headaches, they pretty much last all day. I have this really annoying pain on one side of my head and eye. I take Tylenol every so often.

Luckily though I met with the radiation oncologist and he said that given how I am managing things right now, that I should not need steroids. That is exciting! I may not be Hulk Sabrina after all. Although I think Bruce Banner turned into the Hulk due to radiation and a lot of anger. I have the radiation thing under my belt already and I am becoming quite enraged every time someone eats a breadstick, so who knows, She-Hulk may be on her way.

And then there’s the hair thing. So I should start losing it a couple of days after my last treatment. I know my hair doesn’t define me, although I do love it because it’s really pretty. I think the hardest part about losing it is that it now forces me to look at my reflection every day and see a sick person staring back. This is the most troubling part. For the past two years I have had an incurable cancer but I never once felt or looked sick. It is extremely difficult to look in the mirror at a bald head due to cancer treatments and not see yourself as ill. I do have my sassy wig which I will be getting styled on Saturday, however it is a subconscious feeling that I have to shake off.

As long as the radiation works (since sarcomas tend to be radiation resistant buggers, of course they do, since that would just be too easy) then everything else will slowly start falling into place. 

For now I am going to try and enjoy the gorgeous weather. Tomorrow will be day four.

Health, love, and counting down the days.
xo

Trying to make the best of it

Remember those times when you are getting ready for a big event and you are super excited, with butterflies in your stomach, and you just can’t sleep the night before? Well anticipating whole brain radiation is sorta like this only not in a good way. 

Tomorrow is my first treatment. 

Typically whole brain radiation treatment is done over the course of five days, but they are going to do it over 10 days for me, as smaller doses over a longer period helps to minimize adverse effects. I think I bugged them so much with all my questions that they were like “alright woman, we’ll do it over 10 days, just leave us alone already.”

Usual side effects during radiation are headaches, nausea (which I detest), fatigue,  brain swelling which will cause me to say or do weird things, and appetite changes. And then there are side effects post radiation as well. Not to mention the steroid side effects, which if all goes peachy, I might not have to be on any according to my radiation oncologist.

Now leading up to this big event, I went in on Friday for my planning CT scan as well as my mask. Yup, I get a mask out of the whole thing. Yay me!

The mask process is quite weird as they start off with this sheet of material with lots of holes in it so you can breathe when they smother it over your face and the water in it makes pliable. So then they contour your face to it while it hardens. Then they remove it and cut out two holes for your eyes and put it back on for proper fitting. The girl said to think of it as getting a facial. Perhaps if I were Jason or Freddy Krueger then it might be a really good facial. I’ve had better. Although the two girls making the mask were super nice and very friendly. Made the process easier. When I am all done, the mask is mine to keep. Was thinking it might be good to have a “trash the mask day” or perhaps it might be good as a Halloween costume. Always thinking ahead.

Here I am with my funky Jason mask . 
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Additionally due to the fact that radiation is super toxic and nasty, all of my hair will be falling out as well. Cancer is the gift that just keeps on giving.

So I went wig shopping! 

I tried on a few just to have fun with the whole thing. Not so sure how fun it will be when my hair begins to fall out in clumps, but I will manage.

I love my hair. When it’s clean it’s shiny, soft and nice. But I have to say some of these wigs felt better than my own locks. I was going to go funky with a new colour, but I might be wearing this thing for a while, so I opted for a more natural look. But I get to highlight, cut and style it still. So I won’t be revealing my new look just yet. In the meantime you can check these out so you can have a good laugh at my expense. 

Enjoy!

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Like I said, we just have to make the best of it. The more I psych myself up for this, the better it will be for me and hopefully the effectiveness of the treatment. I just need this to work.

I will let everyone know how the first session goes.

Health, love, and wigs.

Xo