Time to be Merry

Hiya Everyone!

So I figure I owe you all an apology as I haven’t been on my blog like I would have liked. I have been having a rough time the last couple of weeks. It’s been rather difficult as I am beginning to feel more and more like a cancer patient. Literally I have no energy whatsoever and I am not really eating all that much – my appetite is really off. And my stomach is terribly unsettled.

When I feel like this, I begin to think that this may be my last Christmas and it terrifies me. I feel as if the cancer is winning. And I can’t have that happen.  I have been feeling much more emotional lately. I can’t even make it through that damn “Christmas Shoes” song without balling. And I have been dropping the f-bomb more frequently for some reason too. I guess cancer is making me a bit of a hick. Need to figure out a wiser way to channel all of my rage.

Christmas time is my favourite time of year. I love everything about this season (okay maybe not so much the frigid weather). So it saddens me when I can’t participate in Christmas activities.  No energy for baking or shopping which are two of my favourite past times. My oncologist said I should take a wheelchair with me to the mall but I choose to walk for a bit, then I sit on a bench for a bit, and so on.  I tend to get winded very easily now. How sad is it when here I am sitting on a bench resting while some grandma zooms by me with 50 gifts in hand. Oh well.

Not sure if I updated you all on my current state. So essentially that “polyp” that was removed from my stomach was indeed cancer. Some sort of sarcoma. Go figure. Everyone seemed shocked as this particular cancer is so rare and it’s even unheard of in the Li Fraumeni world so I must truly be some sort of mutant. I lost count……cancer #7?

Anyhow I was booked for a CT scan of the abdomen to see if there is anymore nasty cancer in the stomach to deal with. I had to drink some foul liquid plus I was given some sort of injection on top of contrast dye. Awful. Since that test, I haven’t been the same. Luckily the test didn’t seem to detect more cancer though I will require another endoscopy a couple days before Christmas where the doctor will attempt to see if he can remove or burn the base of the tumor, which is still inside me. Fun stuff.

It’s been quite the bumpy ride but being slightly stubborn I refuse to believe that my expiry date is up soon so I am continuing to be hopeful despite the statistics. But I am not going to lie, it’s been challenging. My oncologist doesn’t think people come out of this when they get to this stage of the disease. But she also doesn’t think I am the typical patient, so who knows what’s in store.

I definitely don’t feel like myself.  I have lost weight as well as muscle and can even feel my bones in certain places. And my poor boobies are suffering too. There are even days where I am so frail and weak that I can actually feel my body breaking down on me. I am desperately trying to reverse this so I can start getting back to feeling healthy again. Hopefully I can still turn it around.

It also makes me feel sad that I can’t really enjoy the season the way I would have liked. I love eating and sharing dinners with friends and family but now eating feels like a chore due to my lack of appetite. And I don’t feel fun. I feel as though I am the sad cancer girl who is depressing to be around. And no one wants to feel like the person that people just pity.

But then the other day it hit me. When you feel lousy and sick you tend to feel angry, depressed, isolated and easily  irritated. However thinking back on all those who lost their lives to this treacherous disease as well as all of the adults and children that are currently in hospital or very sick I become much more thankful.  I have lost people to this disease and I am sure they would be thrilled to be alive. So as frustrated as I may become, I will always be thankful for my life and for everything I do have.

As a society we are so consumed with ourselves and we have such a sense of entitlement as to what we think we deserve. No one takes the time to slow down and appreciate what they have already been given. It i quite easy to take everything for granted and always look to those that have more. But it takes  strength of character to look at those that are less fortunate and be thankful for what we have. We need to look around us and be grateful especially during this season.

Despite the aches and pains, the upset stomach, the lack of energy, the diarrhea, the lack of appetite, the fluid around my lungs, the shortness of breath, and the coughing, I still have so much to be happy about and live for.

So regardless if I am being naive or not, I cannot give up. I have too much to live for. I can still get out of bed and I can still sit and enjoy Christmas carols while I slowly work on some Christmas stuff. I can also still enjoy snuggling up on the sofa and watching Christmas movies or stare at the laser lights that my amazing husband put up to make me feel a bit more festive. I love that man.

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I think the main point I want to make from this post is that for all those brave children and adults battling cancer, especially an advanced or late stage cancer, they cannot give up. It’s rather easy to become obsessed with death when you see yourself slowly deteriorating right before your eyes. You begin to panic that this is it. You begin to recall all those around you that passed away from this disease and  how you are starting to look like what they looked like. And it’s really scary sh@t.

I just want all of you to know that no matter what people say, it is really difficult to focus on the good when you feel so bad and so scared. But cancer is no dummy, unfortunately cancer cells are quite intelligent and they will take over, especially if we make it easy for them.  As difficult as it is we have to focus on the positive and this will allow us the opportunity to try to get better. In the end life will play out as it is supposed to. All we can do is try our best. And that is exactly what I am doing.

Health, love and tis the season 🙂
Xo

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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

Stick it to sarcomas!

I'm kicking cancer, yo!

I’m kicking cancer, yo!

Today I am writing to raise awareness for something near and dear to my heart – that rare family of cancers known as sarcoma.

July is deemed Sarcoma Awareness Month. So, let’s raise some awareness for sarcomas.

For starters, sarcoma sucks!

I often consider myself the ‘sarcoma queen.’ I’ve had cancer five times and four out of those five cancers were sarcomas.

What exactly are sarcomas, you might wonder? Well, even if you aren’t wondering, I am going to tell you anyway. Sorry folks, its part and parcel to the whole awareness thing I am going for.

Sarcomas are rare cancers affecting bones and soft tissues. These types of tumors arise from connective tissue — including fat, muscle, blood vessels, deep skin tissues, nerves, bone and cartilage.

Sarcomas affect children, adolescents, and adults; although some types of sarcoma are more common in specific age groups. Despite that sarcomas account for roughly 1% of all cancers diagnosed, in the pediatric world and young adult population, sarcomas account for roughly 15% of cancer diagnoses.

Pretty much every Canadian (unless you have been living under a rock) as well as millions of other individuals around the globe have heard of the very courageous and inspiring Canadian hero, Terry Fox, who became famous for his “Marathon of Hope” run across Canada with one leg in order to raise money for cancer research. Yes, one leg people! However, what most people don’t know about Terry Fox is that the disease that claimed his leg and his life was osteosarcoma. He died from metastatic osteosarcoma.

What an awesome guy!

What an awesome guy!

Now you are probably thinking, hey wait a minute, don’t I (as in yours truly) have osteosarcoma. Yes, I do.

However, for me Oscar the Osteosarcoma originated in the soft tissue of my neck. Therefore, my diagnosis is metastatic extraskeletal osteosarcoma. Essentially, that’s just a fancy way of saying the cancer is in the soft tissue and not the bones. Whatever you want to name it, it sucks.

Due to its rarity, funding for sarcoma research is limited.

To further complicate matters, there are approximately 50 subtypes of sarcoma, making it even much more difficult to hone in on a cure that would be effective for each and every type of sarcoma out there.

Although we have made advancements with respect to sarcomas, we have a ways to go, my friends.

There have been several advancements made in Canada and around the world since the untimely death of Terry Fox, advancements such as limb sparing surgeries as opposed to amputations. However, unfortunately there still remains a lot of work to be done to help those suffering with these types of cancer live long fulfilling lives.

To make matters worse, in many cases sarcomas tend to be quite aggressive buggers and therefore have very high recurrence rates. Many times when the sarcomas recur they are often more aggressive and lethal. In many cases sarcomas metastasize to distant parts of the body, namely the lungs.

Typically primary (localized) sarcomas are treated with surgery, chemotherapy and radiation therapy (which was my case exactly for the rhabdomyosarcoma when I was three years old). Basically, the only way to cure sarcoma is with surgery (and clear margins). Cut the nasty thing out! Surgery seems to be the gold standard for these types of cancer.

However the situation becomes troubling when the sarcoma recurs or metastasizes. In these cases the sarcomas become desensitized to standard chemotherapy and radiation therapy, meaning the tumors generally don’t respond well to these treatments. And surgery in these cases is often futile or not even an option. This is why when the sarcoma metastasizes oncologists tend to predict a poor prognosis or chance of survival for their patients.

Ultimately nearly all metastatic sarcoma patients are given a dismal 20% five year survival rate.

Sadly sarcoma has claimed and continues to claim the lives of thousands of individuals, young and old alike.

We must raise awareness towards these rare and poorly researched cancers.

We need to stick it to sarcoma once and for all.

Come on, go out and tell your friends and get the word out. You know you want to.

Love, health, and keeping our connective tissues intact!
xo

Let’s Talk About Mets, Baby

No, I’m not talking about the baseball team, as I am more of a hockey girl. Although I have to say that it’s pretty embarrassing to be a Toronto Maple Leafs fan nowadays. Let’s just put it this way, I think I have a better chance of surviving metastatic cancer than the Leafs have of winning the Stanley Cup anytime soon. I can’t believe I just said that.

Which brings me to the real topic of this blog….metastatic cancer! Something that needs to be talked about and not pushed aside.

In ‘Cancer World’, “mets” refers to metastatic cancer, or metastasis. For instance, I have lung mets. In simple terms, my original cancer has spread to my lungs; it is not lung cancer. Metastatic tumors always start from cancer cells in another part of the body. For me, “Oscar the Osteosarcoma,” originally in my neck, managed to find its way into my lungs, giving birth to “Mildred the Metastases.”

The cancer cells in the new tumor are the same as the cells in the primary tumor. As I mentioned earlier, if the cancer cells go undetected by the immune system, they travel via the blood or lymphatic system to form a new tumor, which is why it’s very important to keep our immune systems strong. Although cancer can spread virtually to almost any place in the body, the most common sites are: bone, brain, lungs, and liver.

There are many factors to consider in why some cancers metastasize and some do not. These factors are: the type of cancer, the grade of the cancer (i.e. higher grade cancer cells are more aggressive, therefore more likely to metastasize), the length of time the cancer has been present, and the cancer cell’s ability to create a blood supply in the new location.

Cancer cells are pretty sophisticated buggers, as it takes a lot of work to spread to a new location and set-up shop there. First, the cells have to break away from the original tumor and travel through the lymphatic system or the bloodstream, then they have to attach themselves to the wall of a blood or lymph vessel, then they need to be able to avoid detection and attack from the immune system, and lastly they need to be able to thrive in the new location they now call home. A tumor in the new location must form its own blood supply in order to survive and grow (this is called angiogenesis).

Seems like a heck of a lot of work, doesn’t it?

This is why it is so difficult to treat metastatic cancer, as these cells have gone through a lot of trouble to find their new home and they are not going to be evicted without putting up a hell of a good fight.

But cancer cells need help to grow, which is why it is so important to keep our bodies very healthy. I can’t stress enough how important our immune system is in all of this. (I’m starting to sound like a broken-record, aren’t I?) If working properly, the immune system can help kick cancer cells to the curb, as opposed to becoming their real estate agent and helping them find a new home.

So why is everyone super freaked out when they hear the words, “your cancer has metastasized?” Well, because pretty much all cancer related deaths are due to metastases. In general, metastatic cancer is incurable and it is rare for someone to live more than 5 years with metastatic cancer, especially in certain areas such as the lungs. Generally, when an organ is involved, the results are not very good, as our organs are vital to our existence. Nearly all metastatic cancer patients are given a pretty grim prognosis or chance of survival (20% seems to be the norm). However, it is important to note that statistics do not reflect reality, as each and everyone one of us is unique.

Some of the factors that indicate a poorer prognosis are the number of metastatic nodules involved, the location of the metastases (for instance, metastases that are concentrated to one area of the organ are easier to resect than those that are pervasive throughout the organ), as well as the number of areas/organs involved (with lung metastases, bilateral metastatic disease, which is the involvement of both lungs is worse than when only one lung is affected).

This is why I urge everyone to take a stand against metastatic cancer! It’s critical that cancer patients (especially those facing a stage 4 diagnosis) and their caregivers educate themselves on their choices and options. They must advocate for their health and well-being. To put it bluntly, no one cares as much about your health as you do. It’s that simple. You need to be the champion of your cause.

Although I think it is important for anyone facing an illness or health condition to be an informed patient, I find this to be especially true in cases where the medical system and conventional medicine doesn’t seem to offer many options or much hope.

Enter in the metastatic cancer diagnosis…

Having had the bad luck of facing multiple cancer diagnoses, I have seen the various sides of the cancer coin. I have been the glorified first-stage cancer patient – the patient whereby all doctors flock to your side and offer countless options and assurances (making you feel secure and confident about your treatment plan).

Then we turn to the fourth-stage cancer patient – the black sheep of the cancer world. This is the patient the medical system walks away from, in a way. This patient represents everything that doctors fear; a patient that in many cases will not survive; a patient whose treatment is unclear and uncertain (ultimately representing a shot in the dark).

Let me be very clear, medical professionals do not purposefully walk away from these patients, it happens in a more subtle and unintended way. It is natural for all doctors to want to save all of their patients, but with metastatic disease, this becomes increasingly difficult. It’s almost as if this distance between the doctor and the patient is needed as a coping mechanism for the doctor. The closer a patient is to death, the harder it becomes for the doctor to face this patient and their grim prognosis.

The metastatic cancer patient represents everything that is wrong in ‘Cancer World.’ These patients allow doctors to face all of the failures and shortcomings of oncology and the medical system. Everything doctors have spent countless years studying in medical school is generally not enough to save the majority of patients with metastatic disease. These patients are not an easy-fix. There are no certainties with these patients. And in many cases, treatment options simply do not exist for this group.

This is why it is so important for these patients to take an ACTIVE role in their care. Ask all the questions you want to (no matter how many), do your research on your options, trust your gut and intuition, have faith, ensure you feel comfortable with your medical professionals and treatment plan, and most importantly, do whatever feels right for you. Additionally, if feasible, it is often beneficial to have an integrative approach to your care – one that combines traditional and non-traditional treatment options.

But what about the “Miracle” survivors?

Despite these grueling statistics, there are also the “miracle” metastatic survivors!  (You are probably thinking, finally, there is a glimmer of hope here.) Remember, there is always some light at the end of every tunnel. These are the spontaneous or unexpected remission cases, those individuals who have defied all the odds and survived their metastatic cancer (even when everyone thought they wouldn’t). Not everyone is fortunate enough to be a part of this group, however. For those that are though, how did they do it? This is precisely what I have been researching over the last several months.

So, who are these “miracle” survivors? They are ordinary people like you and I. These individuals either refuse conventional medicine, or they try conventional medicine and when it no longer works they then switch to alternative treatments, or they use both conventional and non-conventional treatments at the same time.

Sometimes a person responds extremely well to conventional medicine and their cancer goes into remission, but many times in the case of metastatic cancer, conventional medicine is not always an option.

Sometimes these “miracle survivors” survive due to sheer luck (their cancer just goes away), leaving medical and non-medical professionals alike completely baffled.

And sometimes these individuals survive due to a combination of factors such as: diet/nutritional and lifestyle changes, vitamins and supplements, spirituality, meditation, alternative medicine, a positive outlook, and a strong support system.

We are not truly able to comprehend why some people heal from their cancer in these unexpected ways and some do not. However, we are able to make a conscious effort to try and include some of these factors mentioned above in order to try to shift the odds of survival in our favour. And we are certainly able to fight for our health at every cost.

Despite the odds, others have survived, and so can you!

In future blog posts, I will expand on these factors mentioned above and how I am incorporating them into my metastatic cancer battle plan. I will offer my experiences, tips, and updates along the way.

Onwards and upwards! xoxo