Time to be Merry

Hiya Everyone!

So I figure I owe you all an apology as I haven’t been on my blog like I would have liked. I have been having a rough time the last couple of weeks. It’s been rather difficult as I am beginning to feel more and more like a cancer patient. Literally I have no energy whatsoever and I am not really eating all that much – my appetite is really off. And my stomach is terribly unsettled.

When I feel like this, I begin to think that this may be my last Christmas and it terrifies me. I feel as if the cancer is winning. And I can’t have that happen.  I have been feeling much more emotional lately. I can’t even make it through that damn “Christmas Shoes” song without balling. And I have been dropping the f-bomb more frequently for some reason too. I guess cancer is making me a bit of a hick. Need to figure out a wiser way to channel all of my rage.

Christmas time is my favourite time of year. I love everything about this season (okay maybe not so much the frigid weather). So it saddens me when I can’t participate in Christmas activities.  No energy for baking or shopping which are two of my favourite past times. My oncologist said I should take a wheelchair with me to the mall but I choose to walk for a bit, then I sit on a bench for a bit, and so on.  I tend to get winded very easily now. How sad is it when here I am sitting on a bench resting while some grandma zooms by me with 50 gifts in hand. Oh well.

Not sure if I updated you all on my current state. So essentially that “polyp” that was removed from my stomach was indeed cancer. Some sort of sarcoma. Go figure. Everyone seemed shocked as this particular cancer is so rare and it’s even unheard of in the Li Fraumeni world so I must truly be some sort of mutant. I lost count……cancer #7?

Anyhow I was booked for a CT scan of the abdomen to see if there is anymore nasty cancer in the stomach to deal with. I had to drink some foul liquid plus I was given some sort of injection on top of contrast dye. Awful. Since that test, I haven’t been the same. Luckily the test didn’t seem to detect more cancer though I will require another endoscopy a couple days before Christmas where the doctor will attempt to see if he can remove or burn the base of the tumor, which is still inside me. Fun stuff.

It’s been quite the bumpy ride but being slightly stubborn I refuse to believe that my expiry date is up soon so I am continuing to be hopeful despite the statistics. But I am not going to lie, it’s been challenging. My oncologist doesn’t think people come out of this when they get to this stage of the disease. But she also doesn’t think I am the typical patient, so who knows what’s in store.

I definitely don’t feel like myself.  I have lost weight as well as muscle and can even feel my bones in certain places. And my poor boobies are suffering too. There are even days where I am so frail and weak that I can actually feel my body breaking down on me. I am desperately trying to reverse this so I can start getting back to feeling healthy again. Hopefully I can still turn it around.

It also makes me feel sad that I can’t really enjoy the season the way I would have liked. I love eating and sharing dinners with friends and family but now eating feels like a chore due to my lack of appetite. And I don’t feel fun. I feel as though I am the sad cancer girl who is depressing to be around. And no one wants to feel like the person that people just pity.

But then the other day it hit me. When you feel lousy and sick you tend to feel angry, depressed, isolated and easily  irritated. However thinking back on all those who lost their lives to this treacherous disease as well as all of the adults and children that are currently in hospital or very sick I become much more thankful.  I have lost people to this disease and I am sure they would be thrilled to be alive. So as frustrated as I may become, I will always be thankful for my life and for everything I do have.

As a society we are so consumed with ourselves and we have such a sense of entitlement as to what we think we deserve. No one takes the time to slow down and appreciate what they have already been given. It i quite easy to take everything for granted and always look to those that have more. But it takes  strength of character to look at those that are less fortunate and be thankful for what we have. We need to look around us and be grateful especially during this season.

Despite the aches and pains, the upset stomach, the lack of energy, the diarrhea, the lack of appetite, the fluid around my lungs, the shortness of breath, and the coughing, I still have so much to be happy about and live for.

So regardless if I am being naive or not, I cannot give up. I have too much to live for. I can still get out of bed and I can still sit and enjoy Christmas carols while I slowly work on some Christmas stuff. I can also still enjoy snuggling up on the sofa and watching Christmas movies or stare at the laser lights that my amazing husband put up to make me feel a bit more festive. I love that man.

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I think the main point I want to make from this post is that for all those brave children and adults battling cancer, especially an advanced or late stage cancer, they cannot give up. It’s rather easy to become obsessed with death when you see yourself slowly deteriorating right before your eyes. You begin to panic that this is it. You begin to recall all those around you that passed away from this disease and  how you are starting to look like what they looked like. And it’s really scary sh@t.

I just want all of you to know that no matter what people say, it is really difficult to focus on the good when you feel so bad and so scared. But cancer is no dummy, unfortunately cancer cells are quite intelligent and they will take over, especially if we make it easy for them.  As difficult as it is we have to focus on the positive and this will allow us the opportunity to try to get better. In the end life will play out as it is supposed to. All we can do is try our best. And that is exactly what I am doing.

Health, love and tis the season 🙂
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

Roller coaster

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The emotional ups and downs. You are angry, sad, bitter, frustrated, disillusioned and completely drained. But then you are happy, hopeful, appreciative and thankful to be surrounded by the simplicity in life.

The physical ups and downs. You are riddled with pain, aches, nausea, unwanted side effects leaving you a little less like yourself each and every time. Then there are the good days when your body is working properly, your immune system is on your side, and the pain is gone. 

The psychological ups and downs. You have thoughts of fear, isolation, uncertainty, and being detached from reality. Then come the days or moments when you feel connected to your life and loved ones again. You begin to see clearly even if shortlived. 

This is the roller coaster that is cancer.

I have struggled with this ride my entire life.

Even in a 24 hour span you may feel a myriad of emotions, physical changes, and thoughts that leave you questioning everything. You may feel nauseous with the constant ups and downs, leaving your stomach all tied up and falling prey to the twists and turns.

A couple of weeks ago very good friends of the family got tickets for Garrett and I to watch a hockey game.   They had two sets of tickets: reds and platinum club. For those of you that have never been to the Air Canada Centre, reds are pretty good seats, but platinum club is insane. You can practically see the player’s nose hairs. Okay, maybe that’s a bit exaggerated. They gave us the platinum club seats. That is just how selfless and awesome these people are. 

We were two rows behind the goalie. This is the closest I have ever sat to watch the Leafs lose. 

We sat so close to the ice that I had to keep my scarf on the entire game, which ended up being useful because when we were on television as well as on the giant screen at the game, it was much easier to spot us. Surrounded by suits, mainly lawyers and bankers taking clients to the game, there we were having a great old time cheering and enjoying our twenty dollar beer and popcorn, and my six dollar water. 

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How cool are we?

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So close!

As per usual, the last 15 minutes of the game was fantastic. They almost tied it.

You are probably thinking why would I bring up the Leafs game in this post. No, it’s not because watching the Leafs is equivalent to having cancer, although it can make you feel nauseous at times. It’s a little more complicated than that.

It is because as we were about to leave the club lounge to make our way to our fantastic seats, I received a phone message from my oncologist. I had asked her to check up on my last CT scan because they had mentioned sclerotic bone lesions and I wanted to know what this was about. I review all of my CT scans with great precision, it is like I am reading a contract. 

Anyhow, her reply suggested that she did not know whether these lesions were bone metastases. Whiskey Tango Foxtrot?! Pardon?! I just thought maybe my bones were deteriorating or something (which is also not really a good thing), not that there could be a chance that miserable Mildred could find her way to my bones to wreak further chaos. I wanted to throw my phone across the room, but at the risk of getting kicked out of the ACC, I played it cool.

So folks this is a long winded example of the cancer roller coaster. I was having a great day, minus the back pain. I was on a date with my hubby watching my beloved Leafs in the best seats I have ever had thanks to the generosity of wonderful people, and the next day I was going to be on the runway, but in the midst of this, CANCER. I was way up but cancer wanted to bring me crashing down. I decided that I wasn’t going to let it, at least not for the next couple of days. I was going to blissfully remain up and not come down until I was good and ready.

I was supposed to undergo a bone scan to get a better idea of what was going on, however I opted against it. I didn’t see the point really since my treatment options were going to remain the same regardless, so why would I add to the radiation burden already on my body. I decided we could track it with the next CT scan perhaps. Sometimes we have to make these types of decisions and logically weigh our options.

And sometimes life is awesome, you are walking runways, eating takeout as a treat, going on fun dates, feeling like King (or Queen) of the world like my boy Leonardo in Titanic, until of course he dies at the end (sorry for the spoiler, but everyone saw that movie), and other times there is cancer. 

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Just another hill along the way.

So until then, I am going to strap myself into the seat of this roller coaster, hope for the best, hang on for dear life and pray that I don’t fall off the tracks.

Enjoy the ride.

Health, love, and twists and turns.

xo