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

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9 thoughts on “Decisions, decisions. 

  1. Dear Sabrina,

    Your extremely honest & open conversations to share what you are dealing with, is so touching to me. Your strength, determination & love of life is the best way & reminder in how to live our lives!

    Thank you for keeping us updated, as you carefully provide every detail possible.

    I wish your decision would come to you in a dream, but trust your heart, as your loving kindness, will God willing help you.

    With BIG Hugs & Blessings, Always,

    Renee

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  2. Listen to your body, and your spirit…so far you had it under control..
    This is a bigger battle….I know you can do it!!!
    Trust in yourself, trust in God
    Love you

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  3. Dear Sabrina,

    I know you don’t like when people give you advice as they always do to us, cancer girls, but as long as both have seen the ugly face of Mildred, I’m hoping my words won’t sound as annoying as the ones comming from outside cancercworld population, lol. You are an amazing woman, your strength and your determination are an inspiration to me. One good friend of mine did send me a little poem which I found uplifting:

    Live without pretending.
    Talk without offending
    Listen without defending
    Love without depending

    You are a fighter, you don’t only talk the talk but also walk the walk and I’m sure you’ll find the right answer not in your dreams but in your heart and mind. Listen to your intuition which guided you so well untill now. You are at cross roads , may G_d bless you and I hope this hard decissions you have to make right now to become as easy as choosing the next morning outfit…Love you

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  4. Sabrina your writing as always is touching and honest. You are brave and a class act – but truthfully these words don’t do you justice (no pun intended with the reference to law haha). I wish I could help you with this – I don’t know how to come to such a decision, except like the others have said, trust yourself when it comes time to do so. You are no ordinary person Sabrina and that will carry you through! You have my support in every way always – I love you and I am here for you my wonderful friend!

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  5. Sabrina your writing as always is touching and honest. You are brave and a class act, although these words don’t even do you justice (No pun intended with the reference to law haha). I wish I could help you with this – I don’t know how you make such a decision except like the others have said, to trust yourself when the time comes to make a decision. You are no ordinary person Sabrina – and that will see you through! You have my support in everything!

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  6. There are no words… If only your strength, determination, grace and humour could be put into little vials and injected into all of us! Know that you are blanketed under a multitude of prayers and good wishes. May God continue to bless you and keep you. You have beaten the odds in so many ways. Don’t give up.

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  7. Hi Sabrina,
    As always, I am in awe, even as my heart breaks for you. Just keep following your instincts and your gut — you know yourself better than any doctor or test. You are in my thoughts as always, and it sounds like whatever you decide and however you decide it, you have the support and love of a lot of people. You rock.
    With love,
    -Allan

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  8. Sabrina, you are so brave and positive. This is a decision no one should have to make. You have done your research and your positive, resourceful attitude will help you take the right road for you, and know it. xxoo

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