Cancer pain. 

Cancer pain manifests itself in various ways. Today I will deal with the physical pain.

The Big C is sometimes referred to as painless, in that you may have some nasty tumor growing inside of you and you don’t even know as there is no pain and there are no symptoms. Now while this holds true in many cases, which can be why cancer is so difficult to detect until it is very late in the game, it is not always the case. 

Sometimes cancer can be very painful. Typically when cancer metastasizes to the bones it can be excruciatingly painful. Additionally some cancers themselves are so large or they may impact tissues and organs in the body, therefore rendering them extremely painful.

I am lucky (which seems to be an interesting choice of words given the multiple cancers) that most of my cancers were not painful nor were they caught too late. I usually found some sort of bump in the early stages. This was both due to my mom and I’s surveillance (literally my mom would periodcally come up to me and molest me just to make sure there were no new bumps) as well as thanks to the screening as a result of the Li Fraumeni. 

However there have been times when cancer was painful for me. When I first found Oscar the Osteosarcoma on my neck I had a small bump as well as the pain of a stiff or pulled muscle. Now I have previously written a post on the negligence of the doctor that visited me, who basically would not order an MRI as it was probably ‘just a stiff neck.’ Yeah whatever lady. Thanks for nothing. Then the bump grew to the point where I almost looked like a two-headed monster and the pain was terrible. I was articling at the time and I couldn’t even hold up my neck by the end of the day. 

Aside from being poked and prodded, and of course the countless cancer surgeries which were no walk in the park, the only other cancer pain I have experienced is with respect to my lungs and the insane lung episodes I have every so often. Just the other night I experienced another one of these episodes.

I have no idea what sparks these or causes them which is frustrating because I have no way to predict when they will occur or more importantly, how to control them. They just show up without warning. When they occur I am pretty much immobilized, I cannot move or breathe. I just take very shallow, short breaths. It literally feels like a truck ran over my chest and crushed every bone on the left side of my chest as well as collapsed my left lung. It’s excruciating pain on the left side while the right side remains unaffected. They usually last a couple of hours before the pain begins to subside. And lately they are lasting longer and longer. No one seems to know what exactly causes them. The only theory suggested is perhaps the tumor on the lining of the lung is growing. 

During these episodes, given that I cannot move or breathe, I think to myself that I will try meditatating the pain away. Not so easy to meditate when you cannot really breathe. Our breath is kinda crucial to meditative states. I also think of the philosophy where you imagine yourself well and send healing energy to the affected area. Yeah, also not genius in the midst of one of these spasms. So then my mind naturally wonders to that dark place. Where all I can think of is “holy shit this hurts.” “Please show me the jackass who thinks pain is an illusion controlled by our mind because I need to beat this person senselessly, till he feels the pain of course.” 

When I slowly begin to regain a touch of movement so that it doesn’t feel like all of my bones are shattered and I can take more shallow breaths than I could an hour ago, I leave my dark place and try to rest or hopefully fall asleep. Unfortunately these episodes last a very long time and take days before you feel real improvement. And the last two episodes seem to have left a lasting impact as they never really disappeared altogether. When I take deep breaths in I can still feel a soreness or pain in my left lung. But I will take this over having more frequent episodes, that’s for sure.

So there you have it, cancer can and does hurt. And it can be much worse than what I have experienced. And sometimes it doesn’t hurt. So ladies get your boobies checked, men get your junk checked too!  And seriously whoever tells you that the pain isn’t really there needs a good ass-kicking to set things straight. 

Till next time guys.

Health, love and getting through the night pain free.

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Date night.


xo

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

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