Today marks three years since I first heard the words: "you have cancer." Everything in my life changed in an instant. My life became divided into two parts. Before cancer and after cancer. Even after I was given the all clear, and a new bill of health my life never went back to what it was before. This doesn't mean my life wasn't good, but rather I realized how quickly and how easily things can change.
I can still vividly remember sitting in my car after taking a day course pertaining to nursing. I had had a biopsy, and didn't think anything would be wrong especially after all the reassurance I received from my family doctor that this lump had a 99% chance of being benign. As I sat in my car, my phone rang and my doctor told me I had cancer. I honestly have no clue how I managed to drive home as I was a big blubberfest all the way home. The most difficult part to finding out you have cancer is by far telling the people you love. Absolutely everything in your world stops. You become numb to everything, and wonder what the hell was my purpose in this world?
The second time I heard I had cancer this past February basically deflated any hopes I had at beating this disease. This time I was knowledgable about what it meant, even though I wish I didn't know what it really meant. I honestly wondered, if all the plans I had for my future are no longer possible then what the heck am I gonna do?? I don't think I'm a bad person, however I am in no ways perfect either. After all this I have figured out what I am beyond passionate about, and it's metastatic breast cancer awareness and advocacy. More needs to be done to bring awareness to metastatic breast cancer and to push for more funding for research. I am not going to simply have this disease without shedding light on it, and I plan on changing the course of the future as it pertains to this disease, especially in young women. I may be one person, but I won't stop until I accomplish what I want.
Three years ago today my world shattered, but today was a new day. A better day. A day where I've finally realized what I want to do, and figured out what MY purpose is.
“It doesn't matter what you did or where you were...it matters where you are and what you're doing. Get out there! Sing the song in your heart and NEVER let anyone shut you up!!”
― Steve Maraboli, Life, the Truth, and Being Free
Saturday, 27 September 2014
Friday, 19 September 2014
CIBC Run for the Cure
I'm sure most people know that I am doing the CIBC Run for the Cure again this year. However, this year my wonderful bestie created an actual team in my name (team super judit). I personally hate hounding anybody for money, unlike my husband who sent repeated texts to friends to donate until they did, hahaha. Sorry guys if you were one of those people. However, as I sat thinking about it I'm actually pretty desperate. The money from the CIBC Run for the Cure is the biggest single day fundraiser in Canada that contributes all its funds towards research, education, and advocacy initiatives. I've mentioned this before that research is what I am relying on to literally keep me alive.
I am asking anyone reading this to please consider donating. Every penny counts and adds up, and this goes on to benefit anyone affected by breast cancer. Survival rates have significantly increased over the years thanks to events such as this, however there's still far too many people who succumb to this disease. Young and old, mothers and daughters, sisters and wives, and even men. Still more needs to be done to change this. If you want to donate directly to me go to CIBC run for the cure and click on donate. Then under individual write: judit saunders. Click on my name, and voila!! Or, simply click on the following link (if it works):
http://www.runforthecure.com/site/TR/RunfortheCureFY15/PrairiesNWT?px=3929419&pg=personal&fr_id=1851
You can also donate directly to our team; team super judit or donate to any of the amazing people on my team:) If you would like, join our team, the more the merrier. My goal is to bring awareness to metastatic breast cancer, and the bigger team we have the greater chance we have to spread the word while directly funding research.
Thank you to everyone who has already donated as this means more to me then you'll ever know.
"Never forget that you are one of a kind. Never forget that if there weren't any need for you in all your uniqueness to be on this earth, you wouldn't be here in the first place. And never forget, no matter how overwhelming life's challenges and problems seem to be, that one person can make a difference in the world. In fact, it is always because of one person that all the changes that matter in the world come about. So be that one person."
- R. Buckminster Fuller
I am asking anyone reading this to please consider donating. Every penny counts and adds up, and this goes on to benefit anyone affected by breast cancer. Survival rates have significantly increased over the years thanks to events such as this, however there's still far too many people who succumb to this disease. Young and old, mothers and daughters, sisters and wives, and even men. Still more needs to be done to change this. If you want to donate directly to me go to CIBC run for the cure and click on donate. Then under individual write: judit saunders. Click on my name, and voila!! Or, simply click on the following link (if it works):
http://www.runforthecure.com/site/TR/RunfortheCureFY15/PrairiesNWT?px=3929419&pg=personal&fr_id=1851
You can also donate directly to our team; team super judit or donate to any of the amazing people on my team:) If you would like, join our team, the more the merrier. My goal is to bring awareness to metastatic breast cancer, and the bigger team we have the greater chance we have to spread the word while directly funding research.
Thank you to everyone who has already donated as this means more to me then you'll ever know.
"Never forget that you are one of a kind. Never forget that if there weren't any need for you in all your uniqueness to be on this earth, you wouldn't be here in the first place. And never forget, no matter how overwhelming life's challenges and problems seem to be, that one person can make a difference in the world. In fact, it is always because of one person that all the changes that matter in the world come about. So be that one person."
- R. Buckminster Fuller
Wednesday, 17 September 2014
Happy Anniversary!
Today marks my 2year wedding anniversary. I can't believe where the time has gone. We have been together 9years now and I am still so shocked as to how much we have been through in those years. Looking back, when we first started dating I was completely carefree, in university, and had no worries. Everything in my life was quite simple. Our biggest concerns were where we were going for dinner.
In the past three years, after my initial cancer diagnosis, it left me completely stunned, saddened, angry as hell, and made me question just about everything including my relationship. Chris and I were engaged when I was diagnosed and all I could think of was why would he possibly want to stay with me?? I was 26 years old and had cancer. CANCER. This meant hair loss, fatigue, neuropathy, nausea, and potentially death. At this point I definitely wasn't a catch. How many men would run as though they were training for the Olympics to get away from ms-shit-outta-luck cancer chick if they knew their partner had cancer?
I definitely made it hard on him. I felt ashamed and extremely vulnerable. I never would have chosen to be bald, but it happened. Chris never looked at me once as if I was diseased, rather he said he liked my buzz cut because he thought I looked like GI Jane, hahaha. As time went on he never once felt ashamed of me. After I had surgery he didn't look at me any differently. I lost my nails from the chemotherapy but he never said, "you're falling apart, this is too much for me to handle."
He stuck by me through everything. Even when I gave him the option to run for the hills if he couldn't handle it anymore; he stood by me. Once I completed all my treatments I realized what true love really is. It isn't about the carefree fun, but it really is "for better, for worse" and in "sickness and in health." We got married after I finished all my treatments. I had super short hair (a hairstyle I never imagined getting married with) and a totally new hair colour. The radiation burns still present on my chest and visible in all my wedding photos. However, at this point I was just ecstatic to have hair, nails, and my life back. Everything about our wedding day was perfect. It was a new beginning, and I had a glimpse of my own mortality and was so happy to put it behind me and move forward.
One and a half years after getting married, cancer came back. The day we found out we sat in the car in the hospital parking lot and cried. Oddly, it wasn't so much the cancer diagnosis that affected me as much as it was the loss of my future. The loss of fertility and knowing we will never have children hurt the most. I wondered how on earth he would handle this? We wanted a family, and we were on the cusp of starting a family, and once again this stupid disease was back! When I asked Chris he said he didn't care if we never had kids as long as we were together. Now I tried to imagine if he was simply trying to be supportive in saying this, but nope he was completely genuine and it affected me in the utmost positive way.
He has come to every one of my appointments, the majority of my infusions, all my scans and tests, and he has done so willingly. I have never had to beg him to, and he has always known how to talk me through all my fears even though he probably has the same fears as me. As we celebrate our anniversary I do so knowing we have been through more in these past few years then most people go through in a lifetime. We know what is important in life and recognize the fragility of it. I couldn't be happier, and look forward to many more anniversaries to come. I would just like a little less focus on illness and a little more focus on health and happiness. Just a little more of the carefree life we had years ago, without it being just a fleeting moment.
Happy Anniversary babes. Thanks for sticking by me through all my "craptaculously" huge health problems. Probably not the future you envisioned as we seem to be aging a bit more rapidly then we would have liked. However, I have figured out one perk! I think between my crappy cancer and your crappy knee we may qualify for rock star parking, AKA: handicap parking:) I love you.
In the past three years, after my initial cancer diagnosis, it left me completely stunned, saddened, angry as hell, and made me question just about everything including my relationship. Chris and I were engaged when I was diagnosed and all I could think of was why would he possibly want to stay with me?? I was 26 years old and had cancer. CANCER. This meant hair loss, fatigue, neuropathy, nausea, and potentially death. At this point I definitely wasn't a catch. How many men would run as though they were training for the Olympics to get away from ms-shit-outta-luck cancer chick if they knew their partner had cancer?
I definitely made it hard on him. I felt ashamed and extremely vulnerable. I never would have chosen to be bald, but it happened. Chris never looked at me once as if I was diseased, rather he said he liked my buzz cut because he thought I looked like GI Jane, hahaha. As time went on he never once felt ashamed of me. After I had surgery he didn't look at me any differently. I lost my nails from the chemotherapy but he never said, "you're falling apart, this is too much for me to handle."
He stuck by me through everything. Even when I gave him the option to run for the hills if he couldn't handle it anymore; he stood by me. Once I completed all my treatments I realized what true love really is. It isn't about the carefree fun, but it really is "for better, for worse" and in "sickness and in health." We got married after I finished all my treatments. I had super short hair (a hairstyle I never imagined getting married with) and a totally new hair colour. The radiation burns still present on my chest and visible in all my wedding photos. However, at this point I was just ecstatic to have hair, nails, and my life back. Everything about our wedding day was perfect. It was a new beginning, and I had a glimpse of my own mortality and was so happy to put it behind me and move forward.
One and a half years after getting married, cancer came back. The day we found out we sat in the car in the hospital parking lot and cried. Oddly, it wasn't so much the cancer diagnosis that affected me as much as it was the loss of my future. The loss of fertility and knowing we will never have children hurt the most. I wondered how on earth he would handle this? We wanted a family, and we were on the cusp of starting a family, and once again this stupid disease was back! When I asked Chris he said he didn't care if we never had kids as long as we were together. Now I tried to imagine if he was simply trying to be supportive in saying this, but nope he was completely genuine and it affected me in the utmost positive way.
He has come to every one of my appointments, the majority of my infusions, all my scans and tests, and he has done so willingly. I have never had to beg him to, and he has always known how to talk me through all my fears even though he probably has the same fears as me. As we celebrate our anniversary I do so knowing we have been through more in these past few years then most people go through in a lifetime. We know what is important in life and recognize the fragility of it. I couldn't be happier, and look forward to many more anniversaries to come. I would just like a little less focus on illness and a little more focus on health and happiness. Just a little more of the carefree life we had years ago, without it being just a fleeting moment.
Happy Anniversary babes. Thanks for sticking by me through all my "craptaculously" huge health problems. Probably not the future you envisioned as we seem to be aging a bit more rapidly then we would have liked. However, I have figured out one perk! I think between my crappy cancer and your crappy knee we may qualify for rock star parking, AKA: handicap parking:) I love you.
Monday, 15 September 2014
This Is For My Nursing Peeps!
I pondered whether to even write this blog. I mean there may be people who read this and realize; shit this is about me. Then I thought, heck I want you to know this is about you! More importantly, I want to enact change because as a nurse who is more of a patient now I want other nurses to realize the words you speak may negatively affect the very people you are supposed to advocate and care for.
I can honestly say that in the six years I have been a nurse I have always treated my families with the utmost respect and kindness. Don't get me wrong, that doesn't mean I didn't complain and bitch about certain situations. Let's be real, we don't always agree with the families we deal with but we respect their choices and, for one, I did not become a nurse to argue with people. If I wanted to do that I would have gone into law. I can still remember a shift where the diagnosis of cancer was made in a child. A sweet, young child. This to me, completely and utterly broke my heart because I knew the devastation this family would feel and the arduous treatments this poor child would go through if he survived. My bestie and I, who is also a nurse, tried to accommodate and speak with the family. Our shift was over, but that didn't mean we stopped caring because the clock showed us our shift was over. Then when we were finally ready to leave we sat in the locker room and cried. We both understood each other because both our hearts broke for this sweet and innocent child and his family. I have a conscience and if I would have left without doing anything it would have eaten away at me. Time is precious, and I understand we all have a life outside of work, however there are times and situations where you need to take your eye off the clock and look the families you care for in the eye and hold their hand through some of their darkest moments. I promise those extra five minutes will be remembered and etched in their minds forever, but you will quickly forget about getting home five minutes late.
Now, here comes my rant...
My husband heard a lot of choice words out of my mouth after my last Herceptin infusion. I have nothing but wonderful things to say about the nurses in day medicine at the Tom Baker. I have always been treated with respect and I have always thought they were incredibly kind. Firstly, I do not have a port. I have seen numerous complications related to CVCs. I, personally, don't care how many times I get poked to get treatment. I DON'T want a port. I hydrate like crazy to help my veins "pop" up so they are primed for getting poked. Do my veins always cooperate? Nope, they sure don't! I still DON'T want a port. I have been on a pretty good role lately on getting IVs in on the first attempt. That was until my last Herceptin infusion.
It took six pokes to get an IV. Not ideal, however I know every nurse tried their best and I can't complain about that. It happens. Almost every nurse who tried went on to ask me if I wanted to get a port. Nope I sure don't. I'm knowledgable about CVCs, and guess what I still don't want one. For people who hate getting pokes then these lines seem quite ideal, however like I said before I don't care about getting poked. Now all the nurses who tried were very kind. Then out of nowhere a nurse, whom I have never seen before, yells over to me that I should get a port. At this point, I was getting a little sick of repeating myself but I told her I definitely don't want one right now. She decided to argue why I should get one and how in her twelve years of nursing she has only seen two complications. Well, this is where I was already over it and told her I had been a nurse for half that time and had seen three people die from complications related to their CVCs.
My odds never fall into the majority so the small risk of infection or potential for a clot are not worth it to me right now. I require infusions every three and four weeks. I am not getting blood draws daily or requiring chemotherapy, so to me I don't feel I need it. If she would have stopped talking at this point I would have been fine but she didn't. In case you didn't catch onto the theme as to whether I want a port, I DON'T. Once I told her that I didn't want one she basically told me in her exact words, "well then you may not be able to get treatment, and you won't have a choice but to get a port."
Firstly, I was completely offended! I understand that my infusions happen at the end of the day and people want to go home, but I'm sorry if I may have inconvenienced you. Since the highlight of my life is going to Tom Baker every three weeks for the rest of my life is what I envisioned. This sucks pretty significantly for ME. What bothered me was the way in which she worded it and her attitude delivering it. She did not say this sincerely to me because she felt bad for me getting poked numerous times, but rather because she wanted to go home and I was inconveniencing her. I'm sorry that I wasn't an "easy" patient. I'd hate to hear what you would tell a patient who codes! Would you let them know how much extra work you had to do to resuscitate them, and how much extra charting you had to do? Ha, just imagine what a hard day YOU had. I mean the person who required resuscitation had it easy, right? Would you argue with them when they woke up about why they had to flippin code on your shift?? I know plenty about ports. I am also a fellow nurse. You want to know why I don't want a damn port? Let me explain...
I have one tit and a six inch scar across my chest, my eyebrows never grew back to what they looked like pre-chemotherapy, I have constant hot flashes, and I get horrid pain in my sternum whenever the weather changes. The first thing I think about when I wake up in the morning is cancer. The last thing I think about when I go to bed is cancer. I am constantly reminded that I have cancer with every ache and pain. I DON'T need another reminder. Hence, I DON'T want a port. The fact that a nurse would threaten me that I wouldn't get treatment basically disgusted me. I come to Tom Baker for treatment for a disease that will kill me. I have a lot of crap on my plate, and I don't feel I should need to argue with someone who is supposed to care for me.
Next time you choose to argue with a patient maybe you should consider empathizing with them. I'm sorry if I delayed your evening of dancing or your drive to Edmonton, or whatever that was so important to you that you had to make a patient feel like shit. I know I can sleep at night knowing that I always put my patients first. I can probably count on one hand how many times I got to leave work on time, however I always left knowing I did all I could to make my patients as comfortable, and as cared for as possible.
Just as you remember the small acts of kindness, sadly you also remember the snippets of crap that impact you so negatively. I just needed to get this off my chest, and want everyone to know that just because I had one bad interaction does not mean that everyone is like this. In the past three years this is the only negative interaction I've ever had. I'm hoping it'll be the last! In case the message didn't get across I'll give one last reminder: I still DON'T want a port;)
"They may forget your name, but they will never forget how you made them feel"
-Maya Angelou
My forced smile!!
Thursday, 11 September 2014
Slumber Party Weekend!
The other week my bestie thought it would be fun to have a slumber party for our nieces. I, for one, never had a slumber party in my life. As a child, I never had any desire to sleep over at any of my friends houses. Therefore, when Lex brought this idea up I thought why not? I'm now 29years old and I might as well have a slumber party prior to the age of 30! Better late then never.
Firstly, we decided to go to Calaway park. My girlies were a little slow getting ready, hence we were late to Calaway park. I think one of them couldn't find their shoes and their hoodie. I mean the shoe bit was essential, and we eventually left once they were found.
Once there, I think we had 5 little girlies with us. The only thing that was difficult was finding rides where everyone agreed to go on and balancing out who sat with which little person. My "princess noodle," who is nine going on forty, started talking about animals when we were in one of the lines. Anyone who knows me knows that for whatever reason I suck at naming animals. Ok, let's clarify, I know the basics. This means dogs, cats, lions, etc... Don't quiz me on moose and caribou and all that crap because they all look the same to me. Yes, you can laugh out loud, animals are my downfall and after 29years I kind of don't care to figure out the difference. As we were standing in the lineup my princess noodle said that dolphins communicate by making whatever noise she made. JOKINGLY, I told her no they don't they actually communicate via whatever stupid noise I made. Well, that did not go over well with my princess noodle. Initially she just got plain out mad at me, then she turned and cried, whilst telling me she didn't want to sit with me on the ride. Oh shit I thought. I swear she's on the verge of becoming a teenager because she may very well be more emotional then me, and I'm in a medically induced menopause!!! This meant I had a few minutes to tell her I know nothing about how dolphins communicate and that I was sorry, and she was right. We had to get on the ride soon and because of all the kids we had with us we were basing each persons size with who could sit with who. Right before we got on, she got over it, thank goodness!! All this, and we had only been there for about 10 minutes!!
After being at Calaway a couple hours we decided to leave and start our lil girls slumber party. As we left, I realized I had nillo clue where I had parked my car. I asked the girlies, and one said row 12 and the other said 13. Well, one row difference is no biggie so we wandered a bit but eventually found it. It was indeed row 12, thank goodness my 5yr old "love bug" remembers more then me!!!
Once we got to Lex' there was one more little girl that showed up, however one more adult came too! It's like an army, once you become too outnumbered you are doomed, so the addition of one more adult was a godsend. Within the first couple hours one of the kids knocked over a large piece of wood in the garage landing on a box of lightbulbs which shattered. Ok, so we rounded them up to go inside as Lex and I tried to clean up. Then, about four pictures somehow fell off the wall with a couple of them breaking. Ok, it was time for dinner at this point. One of the girlies accidentally also dropped all her ice cream on the floor. Now I love children, but it felt like we were in a natural disaster! It's amazing how little people can do sooooo much destruction in such a short amount of time.
The kids got to have their nails painted and their hair done which they loved. By the time it was bedtime I was tired and so looking forward to it. Initially the little girls would all sleep together, and I had my own room to sleep in. In theory, this was going to be lovely. Then my princess noodle told me she wanted to sleep with me. Fine, it's a big bed. Then my love bug woke up and told me she wanted to sleep with me. Fine I thought. However, I had to sleep in the middle. I told her no because I have hot flashes and this involves the covers coming off and on, however she refused and I didn't want to argue. However, she ended up laying her head on my chest and wrapped her arms around me. Now for anyone experiencing hot flashes you'll know that this is not conducive to sleeping! In fact this is a bit of a nightmare scenario as I just wanted to gently push her head off me and switch positions with her because I was boiling. I literally may have been a fire hazard as I felt so overheated!!!
Morning came, and it was time to go home. The girls had a blast and I had my first slumber party, AKA: let's-try-not-to-break-
I'm ecstatic my nieces had a great time, and I got to hang with some of my great friends. However, the next day I did resort to my "leafy, green, medicinal herb" and I had my own slumber party with me, myself, and I!!
Firstly, we decided to go to Calaway park. My girlies were a little slow getting ready, hence we were late to Calaway park. I think one of them couldn't find their shoes and their hoodie. I mean the shoe bit was essential, and we eventually left once they were found.
Once there, I think we had 5 little girlies with us. The only thing that was difficult was finding rides where everyone agreed to go on and balancing out who sat with which little person. My "princess noodle," who is nine going on forty, started talking about animals when we were in one of the lines. Anyone who knows me knows that for whatever reason I suck at naming animals. Ok, let's clarify, I know the basics. This means dogs, cats, lions, etc... Don't quiz me on moose and caribou and all that crap because they all look the same to me. Yes, you can laugh out loud, animals are my downfall and after 29years I kind of don't care to figure out the difference. As we were standing in the lineup my princess noodle said that dolphins communicate by making whatever noise she made. JOKINGLY, I told her no they don't they actually communicate via whatever stupid noise I made. Well, that did not go over well with my princess noodle. Initially she just got plain out mad at me, then she turned and cried, whilst telling me she didn't want to sit with me on the ride. Oh shit I thought. I swear she's on the verge of becoming a teenager because she may very well be more emotional then me, and I'm in a medically induced menopause!!! This meant I had a few minutes to tell her I know nothing about how dolphins communicate and that I was sorry, and she was right. We had to get on the ride soon and because of all the kids we had with us we were basing each persons size with who could sit with who. Right before we got on, she got over it, thank goodness!! All this, and we had only been there for about 10 minutes!!
After being at Calaway a couple hours we decided to leave and start our lil girls slumber party. As we left, I realized I had nillo clue where I had parked my car. I asked the girlies, and one said row 12 and the other said 13. Well, one row difference is no biggie so we wandered a bit but eventually found it. It was indeed row 12, thank goodness my 5yr old "love bug" remembers more then me!!!
Once we got to Lex' there was one more little girl that showed up, however one more adult came too! It's like an army, once you become too outnumbered you are doomed, so the addition of one more adult was a godsend. Within the first couple hours one of the kids knocked over a large piece of wood in the garage landing on a box of lightbulbs which shattered. Ok, so we rounded them up to go inside as Lex and I tried to clean up. Then, about four pictures somehow fell off the wall with a couple of them breaking. Ok, it was time for dinner at this point. One of the girlies accidentally also dropped all her ice cream on the floor. Now I love children, but it felt like we were in a natural disaster! It's amazing how little people can do sooooo much destruction in such a short amount of time.
The kids got to have their nails painted and their hair done which they loved. By the time it was bedtime I was tired and so looking forward to it. Initially the little girls would all sleep together, and I had my own room to sleep in. In theory, this was going to be lovely. Then my princess noodle told me she wanted to sleep with me. Fine, it's a big bed. Then my love bug woke up and told me she wanted to sleep with me. Fine I thought. However, I had to sleep in the middle. I told her no because I have hot flashes and this involves the covers coming off and on, however she refused and I didn't want to argue. However, she ended up laying her head on my chest and wrapped her arms around me. Now for anyone experiencing hot flashes you'll know that this is not conducive to sleeping! In fact this is a bit of a nightmare scenario as I just wanted to gently push her head off me and switch positions with her because I was boiling. I literally may have been a fire hazard as I felt so overheated!!!
Morning came, and it was time to go home. The girls had a blast and I had my first slumber party, AKA: let's-try-not-to-break-
I'm ecstatic my nieces had a great time, and I got to hang with some of my great friends. However, the next day I did resort to my "leafy, green, medicinal herb" and I had my own slumber party with me, myself, and I!!
This was after our dolphin discussion:)
Me and my love bug!
All the little girlies. Cute as can be!
Lexer and I
If only they actually would have fallen asleep!!!
This is off topic, but that's just how my mind works, but thanks again Megs for the oreo ice cream sandwich at my last Zometa infusion:)
Saturday, 23 August 2014
What a Week!
My goodness the last week was busy to say the least. It started on Tuesday when Chris had his consult with ortho in the morning. Going into it I knew I had my consult with the neuro radiation onc in the afternoon, and then I would have radiosurgery the next day on Wednesday.
When we went for Chris' appointment the doctor told us he could do the surgery the next day. Wait, what? Honestly, how often do people have a consult with ortho only to be told they would operate the next day? It would have been lovely, except for the fact that I was to have this darn radiosurgery the next day. When he initially told us the surgery would be the next day we both just laughed because we thought he was joking. Nope, he was pretty serious. Thank goodness for our parents because we couldn't have done it without them! My mom became our driver and Chris' parents kindly took our dog so we would have one less thing to worry about. I'm so appreciative for having such a wonderful family.
In the afternoon I went for my consult. Firstly, I had radiation over two years ago to my chest and it was fairly straightforward. This time I was referred for radiosurgery which is radiation, but it's very high dose and precise. I mean 200 beams aimed at my head. Hmm.. that's slightly stressful because your brain is not exactly a place where you want small errors to occur. When I met with the nurse at the radiosurgery clinic I felt completely at ease. She was one of those people I felt like I had known for years, and had an amazing ability to make you feel like everything was going to be ok. She told us that I would need to be back the next morning by 7:30 to have a CT so that they could map everything out and then come back in the afternoon. The only problem with this was that Chris had to be at the private clinic for surgery by 7am and I wanted to be there prior to him having surgery. She told me how they have a fairly tight schedule and typically they can't adjust times, but that she would go talk to the people at CT and see if they could adjust it. Sure enough she came back and told me it would be no problem, and to just come back as soon as I had Chris sorted out. Now I know this may seem like something minor but it meant a lot. When we were already stressed and trying to sort out how we were going to get things done this news allowed us to breathe. Suddenly by being the patient I realized that it's the small things nurses do that can really make all the difference in the world.
After meeting with the resident and the radiation doctor they made the face mask which they would use during treatment to keep my head from moving. Firstly, the resident was nice, but very cut and dry. I don't know, but having someone tell me that my cancer seems to be very aggressive, and I'll likely have more "spots" pop up and whole brain radiation may be an option later on didn't sit well with me. I am very knowledgable about my disease and when you have metastatic cancer you want to have small victories. I don't want to feel completely hopeless, and to me this was just another hurdle to deal with and then move on. Now I can completely see how some people are just so much better at disclosing information. Dr. Webster has never made me feel like I was shit outta luck. I was actually happy when this resident stopped talking because I didn't care to hear any more of what he had to say. Don't get me wrong, he was nice but I really didn't care for his delivery. The actual radiation oncologist did tell me that on the bright side if there's a spot you want to get cancer in the brain that this was it! Since the location was far enough away from my optic nerve and brainstem I didn't need to get a head frame, yaaaay!! With a head frame they literally drill screws into your head, while being awake! I was ecstatic about not getting screwed in the head!
After we met with the radiation doctor, I met with the radiation techs who made the face mask. Essentially they heat up this mask which they then put on your face, and then push ice packs on it to help mould it to your face.
The next day, we went to this surgical clinic to drop Chris off. As I waited for him to go in, I was once again reminded as to why I left the adult world. The man in the bed next to Chris whined about utterly everything and this was pre-op!!! I had a pretty good guess as to how this man would be post-op. Once Chris was ready to go in I left with my mom to Tom Baker. Once there, I got an IV and went for a CT. This CT they did with the face mask. Once they put the mask on you can't open your eyes or move your head at all. For me, there's something kind of panicky about this. Obviously I didn't vocalize this, but to not be able to move or see makes you feel pretty vulnerable. I must say the radiation techs, the people in CT, and everyone else who was there were amazing. They talked me through everything, and were so kind.
Once the mapping was done I went back to the surgical clinic where Chris was already all done. Unfortunately, what was supposed to be a simple knee scope was slightly more complicated and Chris was told that he was non weight bearing for six weeks!! Now, the man in the bed next to Chris did create some entertainment for us as I had expected and I really did feel for his nurse. As soon as he got wheeled back he immediately started telling the nurse that he needed Percocet because he was in pain, "a warm blankie" (yup that's a direct quote), then he needed help to pee because he needed to void immediately. Ok, then I heard the nurse telling him that his new BP meds he was on may need to be tweaked because his BP was high. Once the nurse walked away, the man told his relative about how his BP meds may need to be increased because his pressure was still high. To this, his relative tells him, "well then maybe you should just pop two or three of those pills then." Chris and I just looked at each other in horror and it took every ounce of effort to not walk over there and tell him please don't try and adjust your BP meds based on trial and error.
Once Chris was ready to leave, my mom and I took him home and I went back to Tom Baker for radiation. Once there I took an Ativan, which I have never had in my life, because I just wanted to be relaxed. The pressure of knowing how much radiation was going to be directed at my brain was slightly stressful and I didn't want any possibility of flinching. Once the mask was on they explained that between each set of radiation they would do a scan to make sure I was still in position, and they are crazy precise when they do your brain, thank goodness. With this radiation the bed also moved, and kind of felt like a ride. We didn't go to Disneyland and I guess this would be as close as I would come. There was even part of the floor that would retract into the ground and all I could think of was that cirque du soleil show; O, because the ground retracts and fills with water. Everyone knows what I'm talking about, right?? I assure you I am still sane! Halfway through my lovely nurse came in and held my hand and talked to me. The entire experience was much better than I had anticipated. The staff at the radiosurgery clinic from my lovely nurse, to the techs, and everyone I came in contact with were absolutely amazing!! They didn't need to go out of their way to accommodate me, my nurse didn't need to come in and hold my hand, the lady in the waiting room didn't need to go speak with my mom and make her feel more at ease, however they did. I am completely grateful to all of them for everything they did, and for making this entire process so bearable. It isn't until you are completely vulnerable that you realize how much the little things people do really mean, and for that I am forever grateful.
After everything was done and I went back home I was pleasantly surprised by dinner on my doorstep by one of my amazing friends, Ashley (yes I feel people should get credit for the good things they do because it really did mean the world to me). As well, Lex had also dropped some things off that I needed and made my life so much simpler. Thanks to the well wishes from all my friends as well because it did mean a lot:) Overall, we made it through relatively seamlessly and now we are moving on, another obstacle overcome. What a week!!
When we went for Chris' appointment the doctor told us he could do the surgery the next day. Wait, what? Honestly, how often do people have a consult with ortho only to be told they would operate the next day? It would have been lovely, except for the fact that I was to have this darn radiosurgery the next day. When he initially told us the surgery would be the next day we both just laughed because we thought he was joking. Nope, he was pretty serious. Thank goodness for our parents because we couldn't have done it without them! My mom became our driver and Chris' parents kindly took our dog so we would have one less thing to worry about. I'm so appreciative for having such a wonderful family.
In the afternoon I went for my consult. Firstly, I had radiation over two years ago to my chest and it was fairly straightforward. This time I was referred for radiosurgery which is radiation, but it's very high dose and precise. I mean 200 beams aimed at my head. Hmm.. that's slightly stressful because your brain is not exactly a place where you want small errors to occur. When I met with the nurse at the radiosurgery clinic I felt completely at ease. She was one of those people I felt like I had known for years, and had an amazing ability to make you feel like everything was going to be ok. She told us that I would need to be back the next morning by 7:30 to have a CT so that they could map everything out and then come back in the afternoon. The only problem with this was that Chris had to be at the private clinic for surgery by 7am and I wanted to be there prior to him having surgery. She told me how they have a fairly tight schedule and typically they can't adjust times, but that she would go talk to the people at CT and see if they could adjust it. Sure enough she came back and told me it would be no problem, and to just come back as soon as I had Chris sorted out. Now I know this may seem like something minor but it meant a lot. When we were already stressed and trying to sort out how we were going to get things done this news allowed us to breathe. Suddenly by being the patient I realized that it's the small things nurses do that can really make all the difference in the world.
After meeting with the resident and the radiation doctor they made the face mask which they would use during treatment to keep my head from moving. Firstly, the resident was nice, but very cut and dry. I don't know, but having someone tell me that my cancer seems to be very aggressive, and I'll likely have more "spots" pop up and whole brain radiation may be an option later on didn't sit well with me. I am very knowledgable about my disease and when you have metastatic cancer you want to have small victories. I don't want to feel completely hopeless, and to me this was just another hurdle to deal with and then move on. Now I can completely see how some people are just so much better at disclosing information. Dr. Webster has never made me feel like I was shit outta luck. I was actually happy when this resident stopped talking because I didn't care to hear any more of what he had to say. Don't get me wrong, he was nice but I really didn't care for his delivery. The actual radiation oncologist did tell me that on the bright side if there's a spot you want to get cancer in the brain that this was it! Since the location was far enough away from my optic nerve and brainstem I didn't need to get a head frame, yaaaay!! With a head frame they literally drill screws into your head, while being awake! I was ecstatic about not getting screwed in the head!
After we met with the radiation doctor, I met with the radiation techs who made the face mask. Essentially they heat up this mask which they then put on your face, and then push ice packs on it to help mould it to your face.
The next day, we went to this surgical clinic to drop Chris off. As I waited for him to go in, I was once again reminded as to why I left the adult world. The man in the bed next to Chris whined about utterly everything and this was pre-op!!! I had a pretty good guess as to how this man would be post-op. Once Chris was ready to go in I left with my mom to Tom Baker. Once there, I got an IV and went for a CT. This CT they did with the face mask. Once they put the mask on you can't open your eyes or move your head at all. For me, there's something kind of panicky about this. Obviously I didn't vocalize this, but to not be able to move or see makes you feel pretty vulnerable. I must say the radiation techs, the people in CT, and everyone else who was there were amazing. They talked me through everything, and were so kind.
Once the mapping was done I went back to the surgical clinic where Chris was already all done. Unfortunately, what was supposed to be a simple knee scope was slightly more complicated and Chris was told that he was non weight bearing for six weeks!! Now, the man in the bed next to Chris did create some entertainment for us as I had expected and I really did feel for his nurse. As soon as he got wheeled back he immediately started telling the nurse that he needed Percocet because he was in pain, "a warm blankie" (yup that's a direct quote), then he needed help to pee because he needed to void immediately. Ok, then I heard the nurse telling him that his new BP meds he was on may need to be tweaked because his BP was high. Once the nurse walked away, the man told his relative about how his BP meds may need to be increased because his pressure was still high. To this, his relative tells him, "well then maybe you should just pop two or three of those pills then." Chris and I just looked at each other in horror and it took every ounce of effort to not walk over there and tell him please don't try and adjust your BP meds based on trial and error.
Once Chris was ready to leave, my mom and I took him home and I went back to Tom Baker for radiation. Once there I took an Ativan, which I have never had in my life, because I just wanted to be relaxed. The pressure of knowing how much radiation was going to be directed at my brain was slightly stressful and I didn't want any possibility of flinching. Once the mask was on they explained that between each set of radiation they would do a scan to make sure I was still in position, and they are crazy precise when they do your brain, thank goodness. With this radiation the bed also moved, and kind of felt like a ride. We didn't go to Disneyland and I guess this would be as close as I would come. There was even part of the floor that would retract into the ground and all I could think of was that cirque du soleil show; O, because the ground retracts and fills with water. Everyone knows what I'm talking about, right?? I assure you I am still sane! Halfway through my lovely nurse came in and held my hand and talked to me. The entire experience was much better than I had anticipated. The staff at the radiosurgery clinic from my lovely nurse, to the techs, and everyone I came in contact with were absolutely amazing!! They didn't need to go out of their way to accommodate me, my nurse didn't need to come in and hold my hand, the lady in the waiting room didn't need to go speak with my mom and make her feel more at ease, however they did. I am completely grateful to all of them for everything they did, and for making this entire process so bearable. It isn't until you are completely vulnerable that you realize how much the little things people do really mean, and for that I am forever grateful.
After everything was done and I went back home I was pleasantly surprised by dinner on my doorstep by one of my amazing friends, Ashley (yes I feel people should get credit for the good things they do because it really did mean the world to me). As well, Lex had also dropped some things off that I needed and made my life so much simpler. Thanks to the well wishes from all my friends as well because it did mean a lot:) Overall, we made it through relatively seamlessly and now we are moving on, another obstacle overcome. What a week!!
The next Three pics show the making of the radiation mask and the final product
So the part that went over my nose got stuck when they pulled it off, and then I was left with a lovely bruise on my nose. They did tell me that that has never happened before! The lovely nurse did mention that I could sue them for this, hahaha
Chris pre-op
My week ended with my usual Herceptin infusion
Thursday, 7 August 2014
Results Are...
"Whoever said that winning isn't everything obviously never had cancer"
Author unknown
I managed to maintain my sanity this past week! The news I got from my appointment wasn't the greatest, but not the worst, I think? I was told that the meds seem to be working at keeping things stable in my bones which was a major thumbs up as I am very happy with treatments that cause relatively few, and manageable, side effects. Now the part that's the thumbs down is that "questionable spot" is indeed cancer; crap. So this damn spot is small to begin with, but grew 3mm in less than 3months, and ultimately it's in a place where if I were to leave it for 6months it would cause significant problems. The cancer decided to take up residence in the left frontal lobe of my brain. Ya, really not a place I wanted to have it, but it's there, so now what?
This is something I need to treat because unfortunately all the meds that I take now, none of them cross over the blood brain barrier, hence the cancer could set up quite a large residence. I'm not down with that. The brain has always fascinated me but this blood brain barrier has pissed me off because it allowed this bloody cancer in!!! Come on body do your flippin job already!!! I feel like my defence system is pretty lackadaisical, let's just let some cancer in here and there, why not. Grrrrr! Body this is CANCER, it's trying to kill you, so let's ramp it up!!!
Now I get to wait for a consult with a neuro radiation oncologist. I was told hopefully within a week because I will most likely have stereotactic radiosurgery. This is NOT surgery, but rather a very targeted, high dose form of radiation. I was also given the option of potentially switching to an oral chemo which slightly crosses the blood brain barrier, but it's effectiveness isn't great. For me, the treatments I am receiving for my systemic disease is working, therefore why change it over to something that will affect my quality of life? Things are stable from the neck down, and because this is a solitary met I feel strongly about this precise radiation. I've seen way too many people want as much treatment as possible right off the get go. This NEVER turns out well when you have METASTATIC cancer. Cancer changes and mutates and I want options if this cancer progresses. It's easy to immediately want to get the cancer out whether it be with surgery or kill it with chemo but this knee jerk reaction doesn't always have the best outcome. Your body can handle so much, therefore I want to be as conservative as possible with treatments, as long as my body cooperates (hint hint to my damn body to help out here).
Metastatic cancer is one f*ck*n bumpy ride! I found after this appointment I oddly didn't cry or feel like I was on a downward spiral. I've realized that this is MY life, and whether I like it or not I have no control over it. I just wanted to find out what we were going to do about this one, and knowing that there was something that could be done was perfect. I am very aware that things could be so much worse. It's a solitary met, and that doesn't happen often, therefore I may have won the brain mets lottery as there's only a single mass!!! I guess I'll learn more about everything after I meet with the specialist. Until then I'm going to keep on enjoying myself because I am not going to let this dictate every aspect of my life. Yes it sucks, but there's a bigger picture, and the only time you really lose is when you allow cancer to take away your happiness. That's not happening. Don't get me wrong not every day is sunshine and roses, but I would say 95% of the time it actually is. If you're stressed about something, sit down and think about it because odds are you're wasting your time with minuscule crapola. Look at the bigger picture and stop your whining, no offence, but I have zero desire to listen to it:) Be happy and count your blessings because you may have more than you realize;)
My lovely little people:)
I have the best friends in the world!!!!!
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