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

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

Decisions, decisions. 

We all have decisions to make in life. Some are trivial and some are life-altering. 

I used to worry about what to wear in the morning or what I felt like eating, now I am worrying about how to stay alive. 

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A week ago my entire life came crashing down on me.  

I know many of you have been waiting eagerly to find out what is happening and how my most recent appointment was. Well for starters, I pleaded my case trying to recall some legal training, however unfortunately new evidence was presented that shocked the hell out of me. And yes, a good lawyer should not be surprised by new evidence, but this I couldn’t have prepared for. And who said I was a good lawyer anyway.

So I went in there all gung ho on gamma knife radiosurgery whereby targeted radiation is sent to the tumours while sparing normal cells. This is typically done on fewer metastases (in some cases they will do a few more) and the brain mets have to be on the small side. My mets are on the small side, however I figured the number might pose a problem, as the MRI picked up 10-12 lesions. But I was prepared with my counter argument stating that I would go in as many times as it took to get these things out, I didn’t care how many times I had to go in and get that mask screwed into my skull (yeah the procedure is a bit on the barbaric side). As long as I could get ‘er done!

To my surprise, I found out that the radiation oncologist physically counted 14 lesions, but the craziest part is that I was told there’s probably about 42 mets in there! 42, holy sh$t!! Essentially the specialized MRI they use for gamma knife will inevitably find more mets that could not be seen on my original MRI. So gamma knife radiosurgery would not be their recommendation for me. Their recommendation: whole brain radiation. Yup, that’s right, they want to fry my entire brain. I guess the logic is ‘go big or go home.’

This changed everything. I am basically being told that whole brain radiation, if it works (nothing is guaranteed, right) will be able to get all of the mets, even the microscopic ones not even visible yet. Basically whole brain radiation sterilizes the brain in a sense. The caveat being the side effects of frying your brain and damaging normal tissue and healthy cells in the process. Basically they are going to make me dumb. Not that I was a genius to begin with, but I like my brain just as it is. Cognitive decline is a side effect.

Apparently I am being told that at my age this will not be a problem. I still feel a little uneasy about it. It is my brain, afterall. 

Oh, and then there’s my favouritethe risk of  good old radiation, a secondary cancer. I guess as early as 4-5 years later, a new annoying tumor can show up in my brain,  or anywhere associated with the general area radiated. And let’s be serious, I have Li Fraumeni Syndrome, so I think we all know how that’s going to play out. But I don’t think they believe I will be around for that long, so they figure I won’t have to worry about that consequence materializing. My oncologist basically told me I should plan my funeral and get going on that bucket list. And I get that this might be a realistic approach and that everyone should prepare for their demise at some point; however I don’t care what anyone says, it is much easier to plan a will when you are healthy as opposed to when living with metastatic or terminal cancer. I will decide when I have those conversations with my loved ones. I mean don’t get me wrong, I love planning events, but my funeral is not one of them. Plus, the worst part is that I won’t even get to be there to see everyone and have some food after, that’s my favourite part.

Oh and you lose your hair. Guess I need to start going wig shopping. It does suck, especially when you are constantly being told how nice your hair is, but if I knew this would work and the cancer would never come back, I would rip each strand of hair off my head myself. Seriously.

To complicate matters even further, as if this isn’t bad enough, the main issue is that even though the brain mets may be able to be controlled, in order for them to stay that way, I need to deal with the issue of disease in the rest of my body, my lungs. Up until now I have not had any  conventional treatment, as per the recommendations given to me and the lack of evidence that anything would work. The complementary treatments I have been receiving in the interim, while perhaps not strong enough to stop Mildred altogether, have helped me get this far. Despite that these mets don’t even look typical, they are being classified as osteosarcoma mets. Mildred is a real beeyotch! And essentially they seem to have made their way from the lungs since I had active disease there (although very slow growing) for so long. I wasn’t even told it was a possibility that Mildred would ever travel to my brain when I was first diagnosed which is probably because most people don’t last this long. Well, screw you Mildred, I’m still here!

The average survival time with brain mets is 4 months and radiation can extend it to 9 months, and this is for patients that are in very bad shape to begin with, which the radiation oncologist doesn’t seem to think is the case for me. And then there are the patients who have been living past five years. It’s all a gamble. Like I said in another post, I don’t like math and I don’t like statistics.

As mentioned earlier, although the brain mets must be controlled, so does the rest of the body. Having said this, there are a few treatments I am considering, and I have also decided I need to go out of the country at this point. Yup, I need to hightail it out of here.

Anyway, now I am stuck with the decision of whether to get the whole brain radiation or get the gamna knife on what they see, which will leave some mets in there so then I will have to go back if nothing can control them. Or, if only the DCA would work! But that is still too early to tell. And I don’t know how comfortable I am with waiting. It’s one of those decisions that we just should not have to make in our lives ever. But some people do. I do. I wish it would come to me in a dream or something. That never happens to me.

This decision is making my brain hurt, literally.

What I can tell you is that no matter what, I am going at this full force.

For now I am going to decide on what tea to make myself.

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Heath, love, and making informed decisions.

xo