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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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


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, 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