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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Hopefully luck is on my side.

Today is St. Patty’s day and I could really use some luck of the Irish.

Because let’s just face it, this is all about luck. 

Cancer doesn’t care how much you fight or how hard you try, either you are lucky or you are not. 

I knew a lot of truly amazing individuals who simply didn’t have luck on their side. 

Right now I don’t feel so lucky. I was dealt a pretty crappy hand and it is starting to feel like the game was rigged right from the beginning. 

But on the other hand, perhaps I was super lucky to have beat five cancers and defied many odds. As far as my oncologist is concerned, she’s pretty shocked that I am still here. Maybe I am pretty lucky. I just hope I didn’t reach my limit.

I have always loved St. Patrick’s day. Although Leprechauns kind of freak me out. I am not Irish, as both my parents are Italian. However I think the Irish and the Italians are pretty similar. For starters, the Irish flag virtually just looks like it started off red, was discoloured by the sun and turned orange. They both start with the letter “I,” and both the Italians and the Irish love food (Guinness is a food, right?). 

Plus, by virtue of marriage, I am partly Irish now anyway. So there.

As such, I am banking on some good old fashioned Irish luck. 

Tomorrow I have an appointment with a brain mets doctor and I will be advocating for myself. Sometimes it is tiring, frustrating and intimidating to advocate on your behalf, but it’s necessary. I know I am looking at whole brain radiation (that is what is going to be suggested), but I will be pushing for Gamma knife or Cyber knife radiosurgery. Sounds pretty friggin scary, I know. Call me crazy, but I would rather not fry my entire brain as a first step though. We will see what ensues. I will be committed and remain strong in my research and beliefs. I will keep you all updated.

I can become entangled in a web of fear, what ifs and worse case scenarios, which will inevitably occur with or without my consent. But for now,  I am simply going to focus on that pot of gold that I hope to find at the end of the rainbow.

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Happy St. Patrick's Day!

Health, love, and leprechauns.

xo

When it rains, it pours.

Nope, I am not referring to the lousy, dreary weather we have had recently. As I type this, the sun is sort of out, so clearly the weather is not the issue.

I am talking about those times when you feel like bad things keep happening, you just can’t seem to catch a break no matter what.

Well this is how cancer patients or those with ailing health tend to feel every time they visit with their oncologist or medical team. The kind of phrases that circulate in the patient’s mind after receiving repeated dismal news usually begin and end with that special four letter word. No, not crap or shit. You get the point.

This is how I feel today. This day deserves a giant WTF?!

Apparently Mildred has taken her cancer party to a whole other level. She’s decided to make life increasingly difficult for me and kicked things up a notch.  It appears as though the cancer has metastasized to my brain, at least that is what the most recent imaging suggests.

Next to being told that they will stop making size five shoes, having cancer go to my brain was the worst thing I could be told.

There are still many questions that remain unanswered and steps to be taken going forward. I am currently in the initial stage of processing the information. I can tell you that things do not look good when you have cancer in the brain, that’s pretty much a no brainer, so lame I know.  However being me and representing a  complete challenge to the entire medical community, I refuse to let numbers and statistics stand in my way. I was never a numbers girl to begin with. Come on, everyone knows that people who don’t like math end up in law school, duh! And plus how much cooler would I be if I could defy the odds and live with cancer in my brain for a long time, or have it go away completely which is statistically impossible. So cool, right?

Now do not think for a second that I am not scared like hell because I absolutely am. I had my meltdown earlier and I am sure there will be plenty more where those came from. But I plan to fight like hell too. That’s what we cancer people do.

It’s not like I am Albert Einstein or Stephen Hawking, but the one thing I feared was to have cancer invade my brain or central nervous system. My cognitive thinking, thought processes, speech, motor skills, and especially my writing. Those are all off limits. There will be a lot of angry people out there if I can no longer write this blog. So despite being upset, scared, sad, confused and totally pissed off, I am also going to fight back. Oh it’s go time!

I have defied odds already, so what’s stopping me now, a little brain cancer, screw you I say!

Well at least they still make size five shoes, right? Perhaps a little leather pick me up is in order. Nothing says “things will be fine” like some new fabulous footwear. Shoe goals people.

Another perfect time to reach into my purse and pull out the good old cancer card. It was getting a little dusty.

In the meantime, now that the rain has stopped, I will wait for my rainbow.

Health, love and rainy days.

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