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

Decisions have been made…and I can’t have regrets.

So after a very long and arduous debate with myself essentially, I have decided that I will undergo whole brain radiation. Yup, against my better judgement I am going to give them permission to fry my brain. What am I thinking?

This decision was not an easy one to make by any means, and I tried desperately to find another option. I reached out to many, had various medical professionals look into my case, and I even requested another MRI. Essentially, the verdict was more or less unanimous and the MRI (although they didn’t take pictures of the whole brain, just part of it for some very odd reason) did show slight progression on two lesions as well as some swelling.

There are pros and cons to whole brain radiation in this case, but what it really comes down to is that brain mets are unpredictable and can be quite aggressive in nature and deadly so the fact that even two have slightly grown is a good indicator that I cannot leave some of these guys behind. I need a clean sweep. The biggest concern is whether the radiation will actually work to get rid of all of them.

There are alternative therapies that I will need to stop during the radiation and two weeks after, but there are some things that I can do to both help protect my healthy cells while also making the tumours more sensitive to the radiation. 

Provided the radiation works, once the waiting period is over for supplements and alternative therapies, I will go super hard with trying to protect my healthy cells from mutations and radiation damage, and of course figure out how to control any disease elsewhere in the body. I have been intensely looking into German clinics at the moment. Apparently they have awesome spas in Germany too.

I will find out more tomorrow about the procedure, side effects during and after the radiation, and when and how long I will be put on steroids. Yes, I will be on roids people, which I am not looking forward to, but will most likely need them to control the brain swelling after they give it a nice dose of radiation. Look out, it’s Hulk Sabrina! 

Oh and at the request of my naturopath, I will be switching my diet a bit to a more ketogenic one. Adding tons of healthy fats, some protein, and essentially no carbohydrates (very, very little). I will still be having an insane amount of organic greens, however I am being asked to add some organic chicken and organic fish. I pleaded not to add meat (and remember this is coming from me, a girl who used to want to eat anything that moved, well okay maybe not anything), but I was shut down.  The reason behind this diet change is there has been some promising results on the ketogenic diet helping with malignant brain tumours in general. Essentially, you try to starve the cancer cells of sugar and force the body to fuel on fat (ketones) as opposed to carbs and glucose. Cancer cells seem to only survive on glucose, not ketones. I still will be eating primarily plant based foods, only way more healthy fats and the occasional addition of organic chicken, as I was already eating some fish. We’ll see how it goes.

That’s it for now folks, I will keep you posted.

I am going to have a relaxing evening with my hubby and rest my poor aching brain for a bit 🙂

Health, love and tough choices.

xo