MRI

So, I had my MRI yesterday, and it was uncomfortable to say the least. I have over 20 MRI's under my belt now, and I'm not claustrophobic. That may be because I have logged so much time in the machines (originally my scans were 60 minutes but now they've cut them to 25 minutes) and I've just learned to "deal" with the machine. I lay on the table, cross my arms over my chest and tuck my elbows in. Kind of like a Mummy. Then I shut my eyes before they put the face mask on because I hate seeing the pure white enveloping me as I am drawn into the MRI machine. Well, yesterday they threw me a curveball. They told me to put my arms down on the top of my legs and placed these thick long foam-rubber things from my shoulder down to my hips and placed me in the machine. Ummm hello? As I could hear the rubber screeching on the sides of the machine and feeling it tighten, I suddenly felt my heart beating faster. I was starting to get claustrophobic. I figured I'd breathe through it, just breathe, and when they bring me out at 15 minutes to inject me with dye before putting me back in I'd ask them about it if it was bothering me that much. It wasn't. I had calmed myself enough with my breathing that I just finished the scan. But afterwards I asked about it. I was informed that some patients let their arms drop when they get in the machine and their arms sit against the machine and it shouldn't, so they are supposed to use these pads. I explained how I am not normally claustrophobic but this really bothered me, and I was told the next time I can let them know and opt for a sheet instead. Thankfully. Because at the very least I'll be having MRI's every 3 months for the next 12 months, and yesterday's MRI was the most unpleasant one I've had thus far. I see my Oncologist on Thursday for my results and I'm hoping for the best. I really do not want to have to do any further treatment. One thing I've learned, however, from reading the book, "Never Leave Your Wingman" is never be afraid to ask for a second opinion. And now, I am not. But let's hope that I don't even need to.

~Tara

My last dose of dexamethasone!

Today was my last dose of dexamethasone. Wahoo! This was the medication I was on for brain swelling due to my radiation treatments, and I'm so glad to be done with it. It had been causing me periodic nausea and indigestion like crazy, but I'm finally done with it. I'm still having the weird loss of appetite issue, but it's not something I'm worrying too much about. I'm still eating, in fact I ate a whole bag of salad for lunch today, lol, so I'm eating. Last week I managed to down a lb of organic strawberries. Mmmm, organic strawberries, My appetite is just changing, and so are my tastes. Perhaps the radiation has something to do with that.

~Tara

Treatment Done!

I completed my cancer treatment yesterday. Yay! I have 28 radiation treatments under my belt, well in my head, and I have the battle wounds to prove it! The burn is pretty bad, but I will be practically bathing in cream now in hopes that it will help. Who knows what will happen with my hair over the next month or so but, meh, it's just hair. You can bet I'll probably be snapping pictures of it and posting here about it, though, if anything interesting happens with it. lol They sent me home with my face mask that I had to wear daily for radiation (see below). What a nice parting gift, eh? So now I wait for my MRI appointment on November 1. But I get to do that at home. In the comfort of my bed. :) I'll miss the nurses at the Lodge, but my bed is a lot comfier, and my kitty shares it with me too. :)

~Tara

Only 1 more treatment!

Tomorrow marks my last radiation treatment in this leg of the journey. I've made it. It started out rough, but I'm here. My stay at the Lodge has been good, the staff friendly and helpful, the patients the same, but the food, well.....it's hospital food. lol I long for the comfort of my bed and being able to stay there and not think of returning here, though. It's a very nice thought. I am eager to return to a proper diet and exercise regimen once my body lets me, but I think some rest is on the table in the near future. What's next? Well appointments, of course. I have my MRI on November 1 and I will meet with my Oncologist on November 17 to see what,if anything, this radiation did, other than leave me half bald. :) Until that time I will keep looking forward.

~Tara

Hello there baldy

Well they say bald is beautiful, but I beg to differ lol.  Boy did I get a shock tonight when I noticed how much hair  I had actually lost during radiation, but I think it's rather the pattern in which it's fallen out. It's just so very odd in the way it's fallen out. I can't describe it, so I've taken some pictures. Side by side. On the left shows you what my head looks like from the back when my hair is combed down. Yes, I have hair, that's the weird thing lol. I got a bob hair cut after I donated 14" of hair and before I went into treatment, and it seems that portion of the hair has stayed put, now everything else has apparently gone south. That's evident by the photo on the right.

The thing is, I don't look in the mirror at the back of my head, and with hair brushed down over the back of my head I didn't really realize that it was balding. I thought it was only thinning. I found out tonight that I was wrong. lol Well I have only 2 radiation treatments left, however, the effects of the radiation can last for up to 1 month after I stop treatment, so I may end up totally bald yet. Who knows. I keep telling myself though that this look is happening just in time for Halloween. Now that I see exactly what "the look" is, I think I need to pick up a goalie mask and a machete.

Happy Halloween everyone.

~Tara

The Potpourri Post

You've already guessed it, this one's going to be all over the place, but I'm starting with one very important thing: ONLY 2 more treatments left! I will be staying at the Lodge Monday night to make things easier and heading home Tuesday after my radiation to be home for the next 4 weeks while I await my MRI appointment. To say I'm excited would be an understatement. I saw my Oncologist on Friday, and he seemed to be happy with how my radiation has gone, ya know, after the chemo conundrum. I will start weaning off of my dexamethasone (for brain swelling) this Thursday, and if all goes well, that means I will be off of that by Oct 10. That would be awesome. So I tried a Peppermint Mocha Latte experiment yesterday. Damn you, seizures. I paid for it for hours. I won't lie though, it was totally worth it.

My husband and I go mall-walking (maybe I drag him with me?) either way, lol, When we do there seem to be 2 spots we'll end up sitting for a drink in the food court that has good wifi reception. Apparently, these have become "our spots", but not just to us, but also to people that work within the food court that see us there. lol We were there yesterday and I just wanted a slice of pizza, so I decided to get a slice at Pizza Pizza and split it with Feral. Well, the girl working there, who always has a smile on her face when I pass, seemed happy to see me. She is about my age, said she hasn't seen my husband and I "at our spots" lol. She said she's looked a few times and noticed we weren't there over the last few weeks, so we talked. And we ended up talking about nutrition. She was adamant about a healthy Vegetarian, or largely vegetarian lifestyle after my treatment was done, understanding how hard it is to eat even remotely healthy while at the mercy of hospital food. She suggested juicing, as well, which is something I considered before going into treatment, too. But the funniest thing was when she said, "and none of this. You can't eat here. You have to look out for yourself.". lol She's right, though. White flour is about as bad as white sugar and all of the other things I should be avoiding. I just thought it was funny she was telling me not to eat there. lol She's a very sweet girl and I had a very nice conversation with her. Some of her sage advice/knowledge  also included to surround yourself with only happy people and positive things. And that God gave you 2 ears for a reason. :) She also adores watching I Love Lucy. No wonder I like her so much. :)

Lastly, I finally picked up my book on the weekend that I'm hoping will be an inspiration to me; Never Leave Your Wingman, by Dionne and Graham Warner. I first saw Dionne on TV earlier this year. She is Canadian, and just a beautiful lady. The epitome of INSPIRATION. So I don't understate their amazing story, this is how the back of the book reads: "Upon hearing a diagnosis of liver cancer in 2001, Dionne Warner said to her then-fiance, "You don't have to marry me." Her fiance, an experienced pilot, replied without hesitation: "You never leave your wingman." Since then, Graham and Dionne Warner, now a seven-time cancer survivor, have battled the disease together - with humour, costumes, courage and hope. Never Leave Your Wingman is an inspiring true story and a lesson in love."

I have only heard of her story and am already inspired by the fact that she is a 7 time cancer survivor.

~Tara

November 17th

That's the day I find out whether all of this has been worth it. Well, whether it's done it's job. I have my MRI on November 1st and I will meet with my Oncologist on November 17th for the results to see what, if anything, the radiation has done. So I don't know about anyone else, but I can't think of a better Christmas gift than to hear my Oncologist tell me that my cancer treatment worked! *fingers crossed*

~Tara

Only 7 more treatments!

I'm nearing the end of my radiation and I'm entering the final countdown. Well, I have one full week and then 2 days of treatment, but I'm entering that final stretch, I can almost taste it! I just want to return to some normalcy, I guess that's all I can hope for. Some routine, oh, and a comfortable bed. lol I want to be able to return to my pre-treatment vegetarian diet, which at the mercy of hospital food has not happened, though I have been flopping between hospital food/gluten free while there,  but when in Rome....... I am happy to say, though, that during my last 4 or so weeks of treatments, my weight hasn't changed, not a bit, which is a good thing. I am actually considering a 75% vegetarian diet after treatment, with a 1 meat dish a week kind of deal. Some people do meatless Mondays, I'm thinking of doing a Meat Monday type of thing. I don't know yet. But if I do, I will be grabbing my meat from The Valli Girls, here in the city. If you are going to eat meat, you can't get your meat any more natural and the way it's meant to be than from here. It is certainly more expensive, but most things healthier are. But your health should definitely be worth it. I know that we want to start back at the gym, but I, of course, want to give my body the time it needs to rest and heal before I start back there again. I also want to wait until my MRI results come back in November before we start paying out membership fees, just in case we have to put it on hold again! But let's hope the treatment worked and that's not the case! Though we will certainly be out walking as much as possible, I certainly love the weather around this time of year! And hey, now is the time all the Halloween and Christmas stuff is out so I can shop, too. :) Only 7 more treatments left, and I'm already looking forward to what I'm going to be doing shortly afterwards. That's gotta be a good thing. Right?

~Tara

Back to the grind

Tomorrow I head back to Hamilton for another week of radiation, I also will be taking my Oncologist's advice and stopping by patient assessment afterwards. I can't shake this ear ache/pain and I'm also having other symptoms with it, so I figure it will be best to just stop by there and have them take a look at me. I've been feeling quite nauseated today and been having sharp pains around my lungs when I breathe in. Oh, yay. What a great time to catch something. lol Though it could explain the massive ear ache I've been experiencing for days, not to mention this chill I can't kick. I've had the fireplace on for 2 days now, cuddled under my sherpa and I'm still cold. I had to go to the pharmacy today and I had to bundle up with my winter gloves on. Grrr. Oh, well. Like I said, I'll stop by PA tomorrow and get checked out, they are really good and thorough. And after this week is finished I will only have 7 days left of treatment!

~Tara

Coffee Seizures

So, my seizures started acting up again, and I'm not happy about it. My Oncologist warned that during radiation it could happen, and joy, oh joy, it did. But the trigger is the kicker. Coffee. Not drinking coffee, but smelling it. I mean, where can you go and not be around someone that is drinking coffee? They started again last Saturday when I was out to breakfast with my Husband and my Mom, and I've had a few every day but one in between. I saw my neurologist yesterday and informed him of this, thinking it was odd that a smell could set them off. Apparently, it's not. And apparently coffee is actually a common seizure trigger. Who'd have thunk it? lol He is increasing my dosage of one of my anti-seizure medications I am on, and I'm hoping that works, only time will tell. He also asked about why I stopped the chemo, and I informed him, and he agreed with my decision. It is nice to have a Dr I respect in my corner, say to me, "if the gene sequence isn't there, it's not worth putting your body through that". Bingo. He gets it. And I think most people who don't opt for the knee jerk reaction get it too. Sadly though I guess there won't be any peppermint mocha lattes in my future. :(

~Tara

1/2 way through treatment!

Yesterday, Thursday September 11, 2014, marked halfway through my radiation treatment! 14 radiation treatments down, 14 more to go! The hair is falling out, the ringing in my right ear is insanely loud, I have sharp shooting pains in my right ear and my head is itchy and tender, but, but..... I'm halfway to the end of this! The fatigue has also started to hit me, but being the stubborn one I am I try to not nap lol, I really should listen to my body more and give in and nap when I need to. Maybe I'll work on that over the next 2 weeks?

~Tara

Hair loss & MRI

So my hair is falling out, something the Dr's were split on whether would occur or not. Well it's happening. lol My head has been very tender and very itchy, and my pillow has had many hairs spread upon it, not to mention the traumatizing hair washes, or just when I touch my head. But the neat thing is that I ended up getting a graduated bob haircut before I came in for treatment, and so it is kind of acting as a comb over at the moment. lol But below is a picture of the baldness that has started on the right side of my head and is sneaking around the back. Just in time for Halloween! Oh, and my first MRI is November 1, 2014. That's when we'll find out if all of this has actually worked. Fingers crossed.

~Tara

The impact of this disease

Being around the cancer centre for 5 days a week not only makes me face the reality of my situation a lot more than if I just went in for treatment daily and left right after, but you also see the reality of the disease in other people and the impact it has as well, daily. I have my radiation daily in 20B, that's my radiation room. There is a small waiting room outside of it with about 6 or so chairs, and it's generally the same group of people sitting there either awaiting their radiation treatments, or awaiting their spouses/person they are with that is in treatment. There is a gentleman that is having treatment (about 40) who has a brain tumour. He is on temodal, the chemo drug I am not compatible with, and while he has been in his treatments I have struck up conversations many times with his wife. It's interesting, names aren't something you learn around there, but cancer stories, life stories, etc, you do.

Anyways, on this past Friday, she asked how my treatment was going, and so I informed her of my decision, and asked how her husband's treatment was going, because up until that time she had said he was having no nausea with his chemo. He still wasn't, but the fatigue was starting to hit him, and he wasn't himself. He was dragging, he was starting to look like a cancer patient and was needing to be wheeled in a wheelchair around the cancer centre to his appointments. I asked if they had any kids; that was the trigger question. She started crying and couldn't stop, as she cried through her words, telling me her daughters were 15 and 8, and how angry they were at cancer and they just wanted it to "go away!" She then apologized and said, "I'm sorry, I really shouldn't be doing this to you." As we shared some tears, I said, "it's ok, I really understand. I oftentimes think it's easier for the person that is going through the cancer than it is for those around them. People don't understand that just because someone has cancer, it isn't just that 1 person that suffers. Your whole family does." She just needed someone to listen to her, and I was happy to. Her husband's radiation and chemotherapy ends on September 24, and he'll have his first MRI soon after. I'm hoping for the best for him, for them. This disease is awful, but I think the uncertainty of it is even moreso.

~TF

My decision to stop chemotherapy

I finally had a look at my MRI, the first time in the 4 years I've been going to the cancer centre (points go to Dr.. Torres). He even printed it out with the full MRI results for me to have in hand. Now, that's all medical jargon, so it means nothing, but the fact he did so means a lot. When viewing the MRI's side by side from July 2013 and July 2014, there is a part of my brain at the right temporal lobe that is plump. That is where the cells are. That's the thing. There is no distinctive mass wrapped up within my brain at the moment, but activity within the brain tissue itself. This is signaling activity of progression. But here's the other thing.

I mentioned in 2010 that I was told I wasn't compatible with the chemo drug. That's not entirely accurate, what is accurate is that my tumour is not compatible with the drug. Confused yet? Yeah, me too. So, all malignant tumours have receptors, and these receptors are what chemotherapy drugs are aimed at, or at least what the Drs hope are going to grab the drugs to kill them in their tracks. My particular tumour doesn't have the receptors that attracts/catches (in laymans terms) the temadol. So, by taking the temadol, it's kind of a craps shoot, I'm hoping that some of the chemotherapy will be picked up by the tumour while it's running through my entire body.

Dr. Torres says he hopes that the chemotherapy would help, but of course he can't make any guarantees (no Dr can when it comes to cancer therapy anyways). However, as sick as I was last week is as sick as I would be for the entire course of treatment due to the fact that this is how my body is reacting to the "ping back" from a receptor that just doesn't like the chemotherapy being tossed it's way. If the proper gene sequence was there, the tumour would act as a sponge and I probably wouldn't have any issues, unfortunately though it's not the case.

He did say I can opt in to chemotherapy at any time if I wanted to, but to me it seems like more of a gamble than I'm willing to make. I can't be laid up and completely dehydrated for weeks on end to try and get through this treatment, a treatment that because my tumour isn't compatible to the drug, I don't even know if there is going to be any end benefit. In the short 1 week I was on temodal, I was in the ER twice to be treated for dehydration, among other things, caused by the chemotherapy.

I said to my husband the thing that really sucks is that if 5 years down the road my tumour returns people can say, "well you didn't try the chemo, see!", but if I did chemo it would end up simply being, "well cancer sucks".

Yeah cancer really sucks. And I hate it with a passion. I'm trying to make the best decisions for myself with what I have, but I can't continue admitting myself to the hospital because I'm reacting to a chemotherapy drug in one way or another that I'm not fully compatible with.

It's a crappy situation. It's hard enough sometimes to pick whether you the chocolate or the vanilla cake, but it's even harder when faced with whether the cancer treatment you are picking is suppose to buy you 7 or 11 years. Well that's how it was put anyways.

Studies are showing that if you undergo radiation only that you have a life expectancy rate of 7 years, whereas those that pick radiation and chemo have a life expectancy rate of 11. Cold hard facts my Dr says. Well, I've come to be at peace with my decision of radiation only regardless of facts. I will live a clean lifestyle going forward, knowing the effects that sugar, flour, etc, plays on the proliferation of cancer cells. I will try to be as positive and as stress free as possible as well, believing that the decision I made is the right one for me.

And I have made the choice to not defend my decision to anyone, nor will I argue it to anyone. I get that people might not understand why I wouldn't take "all treatments available to me", but until you are standing in the shoes and dealing with the situation first hand, you really truly just can't understand it all. I just hope people can respect my decision to nix the chemo and go forward with radiation alone.

When I felt something on my tongue the other morning and opened my mouth to see, I saw the huge scar on my tongue from the chemo burn I got on Aug 21st from my first incident with the chemo pill. I thought to myself, "if this is how I'm reacting to the chemo, if my body is rejecting it, and this is how it's leaving scars on my tongue, what's it doing to the rest of me?" It just solidified my decision to stop taking a drug that I/my tumour, is not fully compatible with.

I hope that people can understand and respect my decision.  Because it isn't up for discussion.

~Tara

Long weekend seemed short

So I was in the ER again yesterday but I knew I would be. When I left Hamilton Friday my Oncologist said if I still wasn't feeling well with another issue I'm dealing with (I will leave full disclosure out here) lol to go to my local ER. So I did. Now, I'm impressed on how quickly I was seen. I arrived at 1:15pm at the ER and by 2:10pm I was assessed, in a room and already had full blood work done, xrays and CT Scan. Then it was the waiting game on results. Of course I also got 3 more bags of saline in me which just seems to instantly make me feel better. Thankfully my results all came back showing good and/or as expected and I left with what I needed to cope through the next few days. But I'm telling you, this chemotherapy is a bitch. I'm not going to lie.

I see Dr. Torres tomorrow to discuss the chemotherapy. I have many questions and I want some firm answers to my questions before I make any decisions either way, so we'll see. Ultimately though it is my decision whether I want to continue with the chemotherapy or not and I hope that if I decided not to, that even if people didn't understand why I didn't, that they'd at least respect my choice.

I didn't get much of a long weekend to enjoy since I was in the ER, but since it was a long weekend it means I'm heading into a short week of treatment. Yay! That means I only have 4 radiation treatments this week, 1 lab appointment and 1 radiation review appointment with my Oncologist. So hopefully it also means I'm feeling better this week and I'm mobile, unlike last, and I can get out and do stuff!

~Tara

Challenging week

To say this week has been a very long week is an understatement. Challenging is more like it. It all started with the continued vomiting, I couldn't even keep water down. It got so bad that I was not only vomiting up the anti nauseant medication I was taking but just looking at a pill I had to take would make me gag. By Wednesday I had no clue how I'd get through the week. I asked my Husband to get me some Glucerna, thinking I could get some liquid nourishment into me. It was a wonderful thought while it lasted. Anything that went in was coming right back out. I couldn't take it. If I sat up or stood up I felt like I was going to throw up, and most often I did. So I was spending 18-20 hr's a day in bed. If I wasn't at an appointment, I was in bed. My stomach was never fully settled but it felt less queasy this way. A problem to that was that my head was started to hurt because of all of the pressure I was putting on it. *sighs* Not to mention I ended up missing radiation sessions due to vomiting.

I was so ready to just pack it in. I was walking to my appointments with my "barf bucket" in hand, I literally looked like the walking dead and I felt even worse. I know the Chemo is kicking my ass, severely. And so I really want to stop that portion of the treatment, but I have been chasing that Dr down to speak to him to have my questions addressed to see if we can work on it or whether I'm just ending it. I saw my Oncologist yesterday for an assessment and he sent me right over to the E.R. I spent 10 hrs there to be told I was severely dehydrated and get several litres of IV pumped into me, including some amazing anti nauseant. I left with a few prescriptions and back to see my Oncologist today. Though I gotta say, having all of that liquid in my body has allowed me to feel a lot better. I feel like I can actually function today for the first time in over a week. AND I actually had real food and it stayed where it's suppose to!

So I show up to my radiation appointment and they asked if I took my Temodal. "No. I'm not taking anymore Chemotherapy until I have a face to face with Dr. Torres". I was told that I needed permission from my Radiation Oncologist that I could have my radiation without having taken my chemo before they'd do it. Ummm are you serious? lol I don't want to take the chemo and you're telling me I need a Dr's note to go ahead with the other portion of the treatment? Whatever. So I went to that clinic earlier today and spoke to my Oncologist and he's cool with it. He knows where I'm sitting with everything, how my experience has been so incredibly horrible, and how I want some solid answers from the other Dr before another ounce of poison goes into my body.

It's the start of a long weekend, so I have 3 nice days to rest at home and just enjoy not being around a medical facility, poked, prodded, or worrying about treatment. And that's exactly what I intend to do.

~Tara

First new combination seems to have worked!

Well, it seems to have at least stayed down. And right now that's a huge victory for me! I took the newest anti nausea medication last night, 1 hr before the chemo pill, and went to bed about 1 hr later. I managed to sleep about 10 hrs before my cat woke me up today and so far *knock wood*, my stomach is feeling ok. I mean it's a bit "meh", but nothing I can't handle. And the best part is I was able to have 2 slices of lightly toasted bread for breakfast and everything has seemingly stayed where I left it. This is very encouraging. I am a bit worried about the next 24 hours or so though. I take my next dose tonight at around 10 pm and then the next dose at around 9am tomorrow morning, I'm not too sure how taking 2 doses so close together will work with my body but I guess I will see. Mon-Sat dosing is pretty even as my radiation appointments allow me at least 24 hrs between chemo pills and I don't have radiation on the weekend so I take my pills later. However, taking my pill later on a Sunday and having to take it early on the Monday means I take them kind of close together those 2 days. I will see how it goes.

~Tara

What a difference a few years can make.

So, I haven't put my thoughts down here for quite a number of years, and that's because everything was going so well. No news is good news, right? Well, I was in observation since my 2010 surgery until my latest MRI results came back in July with news that my tumour was starting to grow again. As things did last time around, they have progressed very fast. I am in radiation therapy and chemotherapy treatment to treat my brain cancer.

Right now, I am staying at the Lodge connected to the cancer centre for my radiation times which are Monday-Friday, and I come home on the weekends. I am currently on the Chemotherapy pill, Temodal, 7 days a week and so it allows me to take it while at the lodge and while at home on the weekends. That chemotherapy pill. That little itty bitty pill. Who knew it could pack the punch it does? I started radiation to the brain on August 20, 2014 and I started (or tried to) chemotherapy on August 21, 2014. It didn't go so well. I took my first dose as per instructions, on an empty stomach 1 hr before radiation. Radiation went fine, and then I had 1/2 a sandwich. Silly me. That set me off on an intense vomiting session of almost 12 hrs straight. At one point I was just bringing up pure chemotherapy. It was burning every inch of the way, up from my stomach, into my throat, out my mouth, etc. I couldn't believe how intense the pain was. I literally cried every time I vomited. I had my husband with me, and we worked really well in tandem. The minute I shot up out of bed, he ran for the kleenex and glass of water at my bedside. I proceeded to vomit and cry and when I'd be done I'd wipe my tears, wipe my face and rinse my mouth. He'd either put his gloves on to dispose of the toxic mess or get someone else to dispose of it. We made a pretty good team.

The next day, I skipped chemotherapy and met with my Oncologist to discuss what happened. I also discovered that my lips were red and raw, and I had chemo burns on my tongue from the drug coming back up. Not fun. My Oncologist gave me a steroid to take, and I now am using a different anti nauseant 1 hr before the pills. My worst fear is my head being bolted to the radiation table (yes it's bolted) and going into a vomiting fit. Where does it go? I'm stuck in a hardened mesh mask and I can't talk or move. It's not a pleasant thought, so I want to get this nausea under control. Tonight was my first chemo dose with that new pill, so here's hoping it works! I'll let you all know if it does, but I really am hoping that it works with my body. I've been told that this chemotherapy drug is well tolerated by most people, so I hope it's just a matter of figuring out what will work best to keep me from vomiting.

~Tara