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!!

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!!!!!

Friday, 1 August 2014

More Tests = More STRESS!!!

This past week has once again been a busy filled, anxiety provoking week. Although I feel good, and have no reason to assume this cancer is any worse there is nillo certainty to this. I watch the reaction of the people who scan me. Are they being nice because I light up like a Christmas tree on the scans, or simply because they're nice? These are the stupid things I pay attention to. My week started with a bone scan. I couldn't imagine it taking longer than the first time I had this done where i ended up being there for over 6hrs because the machine kept breaking. Yup, not even kidding. I thought I was simply having the worst hot flash ever, but in reality it was the machine overheating.

The last time I saw Dr. Webster in June I had some pretty unexpected news that I chose not to tell anyone other than my family and my bestie as I didn't feel the need to say anything to anyone else because there was uncertainty regarding what they saw on the scan. Firstly, the last time I saw Webster I really wasn't expecting anything, at all. However, he told me there was a "spot" that they had seen, but after consulting with other specialists they couldn't identify whether it was cancer. Ummm... Ok. The radiologist actually wrote that it was concerning of an early metastatic deposit. Shit, that was my initial reaction. Chris and I left that appointment a bit confused and worried. I was feeling really good, therefore this news caught us extremely off guard. I am not good at lying, therefore I told the people I was the closest to that I couldn't keep a secret from, even though I utterly hate placing a burden on anyone else, but it was some pretty significant crapola to hide! I was told that they wanted to repeat the scan 6weeks later. Perfect. How on earth I would maintain my sanity for that long was beyond me, therefore our vacation to California couldn't have come at a better time because I needed to escape in any possible capacity I could.

Fast forward to this past week and I just want some answers. In my ideal world, whatever the heck that "spot" was, it would be gone or I would be told it's completely benign. I don't have any symptoms from it, therefore I feel that's a positive sign at least. Therefore, after a bone scan, CT scan, and an MRI, I now patiently wait... Yup, patiently. Well, not really. My follow-up is in a week to go over these scans so I'm trying to consume my time with anything and everything that makes this week go by quickly!! My princess noodle and my love bug are my go to gals!! They definitely take my mind off the uncertainty and STRESS that comes with these tests because I become too busy with them to allow my mind to wonder. Thank goodness to my little people:) To put into perspective why my sweet little ladies put my mind at ease I must share what my love bug said to me the other day. I was heading to a baby shower and she asked me where I was going. I responded by telling her that I was going to a baby shower. She looked a bit puzzled and asked, "is that where you guys give the babies a bath." I couldn't help but laugh as I loved her innocence in regards to having no clue what a baby shower was, too cute:)

Once I meet with Dr. Webster and find out my results I will let everyone know. Fingers crossed the last "spot" will be gone, and I'll be able to have a good laugh about the unnecessary stress I have put myself under. One week to go!! The countdown begins, just six more sleeps to go!!!!

CT day!
Staying hydrated as I am not a fan of the crapola contrast that's not good for the kidneys. Would like to keep the kidneys in stellar shape!
MRI day, that's a thumbs up, NOT the middle finger:)
Hercpetin day July31st. I am a lucky gal as Lexer brought tupperware containers with popsicles and ice! All of which fit into her purse!!! Oh, she also had an ice pack which came in handy when I had a hot flash:) Seriously who actually has a friend as wonderful as lex??? You are one of a kind buddy;)
OK, the next few pics are from Herceptin day. We were dressed to go out for dinner afterwards, however my popsicle started to drip everywhere. Lexer should be a photographer as she captures EVERYTHING!