Despite the bad days, there will still be smiles

Hello loyal readers!

I have missed all of you. I have to confess that the fatigue, the overall weakness and the general anger and irritability have kept me away.

I am working on getting myself back in shape, both physically and mentally. Unfortunately cancer and all its nasty side effects do not simply manifest themselves in the physical form, but rather they also wreak havoc on our psyche and mental wellbeing. The gift that just keeps on giving.

What I have realized throughout my long and arduous cancer journey spanning 32 years is that sometimes it’s okay to be pissed off and angry at the world or to want to kill the next healthy person that tells you to be positive and thankful for what you have. It’s okay to vent or cry, this doesn’t mean we are weak. Our bravery and strength is not defined by our happy face or constant smile. It’s much more meaningful than that.  Our courage does not decrease if we don’t aimlessly walk around with a positive attitude at all times. Sometimes life hurts and it’s okay to feel that way. Our strength in facing cancer or hard times is embedded deep within us and it gives us the courage and resilience to move on despite the bad days. A bad day, week or month does not affect our bravery or determination to beat this dreadful disease.

Obviously we need to move past our bad days, our sadness and our anger. However we must do this on our own time. No one can really feel or experience what we are feeling so no one is qualified to fix the issue. No one but us. We have to work through it. Of course the support is always appreciated, but ultimately it is up to us to fix the issue at hand.

And we will. We won’t let cancer win, not to worry.  But the journey will involve crying and homicidal rages every so often.  I’ve been there, done that. It’s completely normal. And truthfully speaking, individuals with cancer or that have gone through extreme difficulty in their lives generally tend to put life into perspective much better than the average person and they are more thankful and appreciative of the good in life.

Now for some light at the end of a dark tunnel, I do not have cancer in my stomach. Booya!! Although given my history and current disease, it was believed to be a cancerous mass, but the biopsy revealed it is not the Big C. It is referred to as a desmoid tumour, and the way it stands currently, there will be no surgery to remove it. Thank the heavens as I was dreading another major surgery.

So you see right now I am focusing on this great news and am extremely thankful. However it doesn’t mean I can’t have a bad day or a rough time every now and then.  That’s just life with metastatic cancer. But for now, I am all smiles 😊

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Health, love and good days.
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


Did you miss me?

Hiya everyone! 

This is just a little update to let you all know that I am still around. So many of you have reached out to me over the last little while, which was extremely touching and inspiring. 

I have had many unexpected circumstances arise as I was about 3/4 through my whole brain radiation treatment. Here I thought things were going just peachy, however not so much. Essentially late Thursday night on April 21st, I noticed my writing was terribly messy, but didn’t think too much of it. On Friday my hand felt very weak and I realized I could not write at all. By Sunday I had lost the total use of my right hand, arm and fingers. It was completely dead weight. I had no idea what on Earth was going on. That was some very scary shit. Pardon my language. 

And it didn’t end there. My right leg started to become heavy and weaker as well, and my speech started to go too. I was slurring my words, couldn’t put a sentence together for the life of me. I have never been so freaked out in my life. It was the most frustrating experience. I knew what I wanted to say but I couldn’t get the words out. And for those of you that know me, I generally am never at a loss for words. I also started losing balance because one side of my body was so weak, and I fell in the bathroom. Luckily I didn’t hit my head or cause too much trauma, just hurt my left knee. And the craziest part is that I didn’t have any symptoms before undergoing radiation. And now this happens.

My radiation oncologist put me on steroids at this point as he figured that there was some swelling but he also suspected the tumor on the left side of my brain (which controls the right side of the body) had grown. I was devastated and super confused. It grew while I was undergoing treatment?! He ordered an MRI to see what was going on. 

The results of the MRI did not show tumor growth at that point but they did show massive swelling especially on the left side of the brain. Okay, so now I could breathe a little.  

The radiation doc said that if it was the swelling only then the steroids would help it go down and I would be regaining the movements and functions I had lost. I have been on the steroids now for over two weeks and I can say with so much excitement that I am regaining the use of my right arm and hand, my right leg doesn’t feel heavy and my speech is pretty much back to normal, which means I can talk up a storm again. I still don’t have the fine motor control in my fingers yet, so I can’t really write or type properly but I am making incredible progress. I have even used my right hand a little to type this 🙂

As for the steroids, they have had some minor side effects so far, the worst is probably the insomnia, given that sleep is super important especially for cancer patients. It has gotten better though. I gained strength on the left side of my body and my appetite is insane. I always had a very healthy appetite but now roids make Sabrina very hungry. Not sure why that sounded like a caveman.

My hair is pretty much gone which took much longer than five days and there are still some stubborn ones and patches that just don’t want to go. Not really enough to do a combover though. 

And there you have it, that’s what has been going on in my life over the last few weeks. I had to keep things interesting right? Now we still don’t know whether the radiation has worked as that will take a couple of months to see the results, but I am hoping, praying, and wishing that it did. Then the next steps are to figure out how to control Mildred, both in the lungs and brain so she doesn’t wreak anymore havoc. She has done enough.

Thank you so much to all of you for the emails, the phone calls, the texts, the packages in the mail, the prayers, and the incredible support. You guys are truly amazing, really. 

Alright I think I have said enough for now. I am going to go eat some more.

Health, love, and eating. 

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