Whoops... I did it again!

Hello everyone! Just a quick update to keep everyone posted. This morning I had another fever so was admitted to the hospital again. Febrile Neutropenia  (low white blood cell count and a fever). It was pretty funny as I was only here a few weeks ago so the nurses at City recognized me and the oncologist here at RUH also recognized me so we were able to joke around right from the get go. I was actually sort of sad I had to leave city because the nurses there are so good and so friendly I didnt want to be transferred, but I had to. They took such good care of me that I had already broke the fever by the time I left and my white blood cell count is a lot higher than the last time I was admitted, so they don’t think I will be here for very long. So hopefully it is only another few days!

Some of you may be curious why exactly I am in the hospital. Basically I am in the hospital because I have no immune system and some how I picked up some sort of infection. As there is no immune system to fight the infection the bodies only response is to get a fever. So, even though I do not have a fever any more I still do not have an adequate immune system to fight the infection. So I stay in isolation to prevent further/future infection and they treat me with antibiotics to fight the current infection and to let my immune system build up before re-introducing me into the wild.

This time I was more prepared and had a hospital bag packed with all the essentials I will need instead of sending Steve on a million trips and i have plans in place to make sure everything runs smoothly. 

I will keep everyone updated as any relevant or exciting news progresses!

Cheers!

Left Foot'n & Right Foot'n,

Steve & Alyssa

My week in Solitary!

-          

Hello Everyone, 

As some of you know this week was a bit of an adventure for Steve and I. Friday evening I was admitted to hospital with a fever and no immune system. I apologize for the delay in posting. I seem to be struggling to write anything coherent lately and this is my third go at writing a post. Anyways here is my best account of events from this week. 

Wednesday I was feeling a bit “off” and had a fever but had taken a Tylenol so I didn't really know what my temperature was. My temperature went down to 99 and stayed around there. Not sure what to do I called the “on-call-ogist” lol (the oncologist on call) and he suggested I stay at home unless my temp gets to 100 and stays there as risk of infection at a hospital is high. Another thing I struggle with is ulcers in my mouth caused by the chemo. The mouth ulcers are like blisters in the back of your throat and this was preventing me from eating or drinking. I slept my fever off, had a dream that my grandpa was curled up on the couch with me. Thursday my temp was all over the map but never really committed to any one temperature. At this point I was unable to eat or drink due to the ulcers in the back of my throat.

-          Friday was the day of the interview and the throat ulcers were very bad. I ended up using the lidocaine mouth wash for the interview and just dug deep and made it happen.  Come Friday afternoon I was very tired and my temperature was stable but high. I felt my temp go up but couldn’t find the thermometer so just went back to sleep. Steve asked what my temp was and I said I had lost the thermometer and promptly received “the look” from him as he went to go discover where I had accidentally hid the thing. We planned to go to the horse races that night but then my temp started to bump up and stay there. This time I did not take a Tylenol. So we were left with the decision to either go to the horse races or go to the hospital. At this point I  started feeling pretty rough so we headed off to hospital.

-          We arrived at city emerge and they had some difficulty accessing my port.  My experience there was really good except for one thing. While working on accessing my port they Dropped their “Sterile field” on the ground, picked it back up and placed it back under my arm to maintain a “sterile” environment. Generally I wouldn’t care but I was coming in with zero immune system and they were poking things straight into my blood system off of this “sterile” field. So that wasn’t ideal but I couldnt bring myself to say anything. 

-          I came in a bit tachycardic, most likely due to dehydration from not drinking and eating, and my blood oxygen saturation's were not as high as I would have liked (low 90’s). So they put me on a saline drip wide open and started pumping me with fluids. By this point my primary discomfort was the throat ulcers which had spread across the entire width of my mouth and were extremely painful. Assuming hospitals had a cure for everything I was happy to be there so they would fix them. Unfortunately there was nothing they could really do beyond what I already had which was a lidocaine mouth wash which was about as effective as trying to put out a camp fire with a cup of water.  After a little while my blood work came back and I was told I would be heading to RUH, then I was given some blood thinners and antibiotics. We were given the option to drive ourselves or take a free ambulance ride. I felt it would be a ridiculous use of resources to send me across a bridge in an ambulance (maybe 5 min drive) so we drove ourselves, but the dreaded “mask” was given to me to wear. I hate "the mask" as it makes me look more sick than I feel, and its a bit conspicuous . When we got to emerge at RUH it was PACKED, people were everywhere, EMTs waited in the hallways with patients on stretchers, people sat in chairs with IV poles beside them as there weren’t enough beds, and I get ushered into my own private room. I mean with walls and a door and everything! Now it wasn’t a very big room, and was definitely not fancy, but I appreciated the fact that people were in the hallways and likely would be for some time and I was getting my own room. Some may ask why I got to walk into emerge and not have to wait and got to go straight into my own room. Well in short, if the wrong person breathed on me I could die. You see my neutrophil (type of white blood cell) count was zero, it was so low that the machines could not measure them so they had to do a manual count. This meant that my body had zero defense against any sort of attack. So keeping me “unexposed” was vital. Because of this I was on something called reverse precautions. Which means any one who enters my room had to wear gloves and a mask.

-          Steve was by my side the entire time and ended up spending the night in a chair by my bedside!

By 3:00 on Saturday we finally got the word that we were on the move and were transferred up to the trauma surgery ward (the oncology ward was not a desirable place to be at that time) where I moved into another private room that had a bigger comfier bed (complete with push button recliner etc), a private bathroom and a window!

Steve spent another night in a chair beside me and was incredibly exhausted by Sunday. Eventually I kicked him out of my room and forced him to go home and have a sleep. Saturday at supper I recieved the previous occupants dinner which I was unfortunately unable to eat. So Sunday morning came around and as it was my first official day in that ward I didnt know what time breakfast was. At 8:30 am the nurse came by and noticed I had not recieved breakfast. She found a food services person and informed them they had somehow missed me. By 9:15 they still hadnt come by so she called down and asked for a meal to be brought up to me. 10:00 she called again and then brought me some juice to tide me over.  11:00 am still no food, they indicate to her that it is too close to lunch and no breakfast would be brought to me. At first I accepted this. Then I compromised and demanded jello and ice cream to tide me over. When the food services girl came to deliver the jello and icecream she said "i guess this must be for meds or something", feeling a little bit hangry I believe my words were "no, in fact its because you never gave me breakfast". That was my most insolent moment for the week, but I was pretty frustrated that it was okay to the staff to just not feed me. My nurse was pretty annoyed as all she could really offer me was toast which I was unable to eat. 

  Come Monday I was pretty excited when I found out breakfast was oatmeal! But other than that I still wasn’t eating much as they lunch/supper program I was on included a lot of gravy. Unfortunately for me the salt in the gravy was literally "Salt in a wound" and made it very painful for me to consume. Finally somebody put a req in for me to see a speech pathologist. However, no one told me.  So in walks a stranger telling me he’s from speech pathology. As I had to see a speech pathologist as a kid I was a)confused and b) a bit offended. 

Then he explained he was there to do an examination of my throat and see if there is anything they could do to help me eat. Well! Now we can be friends! So after some discussion we switched me from the “advanced minced diet” to the “soft diet”. He also had the dietitian come up and she informed me that I could be getting up to 3 snacks a day on top of my meals and the same day they started giving me a menu to select my food off of and voila! I was eating again. It took a couple of days before eating wasn’t painful (eating a pudding or jello would put me in tears) but I was getting nutrition in me, which was of immense relief to all involved parties. The thing I have learned with hospital food is that even though it might not always look super appetizing it actually tastes pretty good and what really amazed me was that they could consistently deliver piping hot meals! I don’t know how many patients are in the hospital at any one given time but I ate a LOT of meals there and there were times I actually had to let my meal cool down first. So kudo's to the staff!   

After four days of not even looking outside my door I was officially suffering from cabin fever and decided I was going to make a break for it. So I unhooked my IV pole from the wall put on a mask and emerged from my room. After checking with a nurse I took off on my adventure around the hospital on the hunt for Jello. 

In case being bald and wearing a hospital gown that dwarfed me whilst leaving my back exposed wasn’t inconspicuous enough I also happened to have the world’s most obnoxiously loud IV pole! I mean it was obscene! For example the main lobby or “mall” of the hospital is a bustling place. My IV pole was so loud that people would actually just completely stop talking and just stare. When walking down a hallway I had to stop so that someone could continue their phone conversation while passing me in the hallway. It got so bad that Steve and I both resorted to carrying the damn thing around instead of pulling it. Thankfully after informing the right people of this unfortunate IV pole it was replaced first thing the next morning and I had the most beautifully smooth IV pole J The other noteworthy thing about my IV pole and the design of the room I was in is that I could leave the IV pole plugged in when I needed to use the bathroom which was REALLY convenient!

 The rest of my week involved eating food, sleeping, netflix and visiting. On Tuesday night I was taken off of my IV except for when I received my antibiotics via IV. On Wednesday I was completely taken off of IV and put onto oral antibiotics and Thursday my blood counts were finally high enough it was safe to let me out and I was released back into the wild!

I have to say my time in the Trauma Ward was amazing! During this experience I learnt that not all nurses are created equal but boy there sure are a lot of amazing nurses out there and I had a bunch of them! They definitely had the ability to "make or break" the experience and almost every single one of them did a bang up job! So thank you Trauma Ward you guys rock! 

Left Foot Right Foot!

Steve  & Alyssa

Paving the Way

Hello everyone!

Wow! Another crazy week! Things have really built up a bit of steam around here. As you probably know my sister Ashley started a GoFundMe account to help cover the cost of my treatment. I have to say that I am in absolute awe of the rapid response of the community! Things have been moving so fast I am afraid I am missing half of what is happening! But it has been completely awe inspiring. So of course I have to start this blog with a GIANT THANK YOU! Thank you to everyone for your support and your generosity!!!!

Today’s post is about the power of community. There are many communities in our lives and they all vary in significance and relevance during different parts of our life but they create the framework of our support systems. Their relevance in our lives may ebb and tide but they leave lasting footholds in who we are. Something that has given me a lot of “context” or support during this journey is that I am not the first and nor will I be the last woman (or man) to be going through breast cancer, and that I am a new member of this unique warrior community. I do believe that there is not a single person who has not been impacted by breast cancer(or any cancer) in some way. However it is important to remember that all battles are individual and unique. During a conversation with my grandfather I have drawn some interesting parallels to his experiences during the war as to those of mine. The main one being is that at similar ages we were both battling to survive but in very different battles and environments.  I would like to clarify that I fully comprehend that there is a huge difference between fighting cancer and the horrors of war, and that I draw these parallels as life lessons and not direct correlations. 

He enlisted at 17 and spent 5 years overseas. I have the utmost respect for my grandpa!

Something that came up as a theme in one of our discussions is that although there were millions of people affected by the war, each person’s experience was wholly unique to them. This works on such a vast array of levels that I find myself reflecting on this a lot. You can even take two men from the same unit and they can tell you the same story with the same facts however each person’s experience is impacted by their previous experiences, their current state of mind and even their vantage points, aims and goals in the situation can be so extremely different. Then of course there is how you experience a moment in the now and how it can evolve as you relive or remember and how we grow from these experiences. Even with their independent experiences these men formed a strong comradeship between them and supported and protected each other.  In war there are many individuals with many stories, it is their individual strengths that combine together to create the army. It is the same as in the community. It is the combination of individuals all invested in the good of the whole that makes it so strong. We learn from the experiences of those before us and strive to improve the path for those coming behind us. This again parallels to the realities of the world wars. Due to the numbers of casualties first aid practices changed rapidly from the beginning to the end of the war. Each man whether a survivor or a casualty was able to improve the survival rate of those who came behind them. As the lessons learned from those before saved those that followed. This too is the way of the cancer journey. The road has been paved by the experiences of those around us.

WWII first aid kid

In my case I have been repeatedly told that there are no accurate statistics as there are simply not enough women may age to have the numbers to create them. So in short my road is more of a feable goat path. But never fear I happen to have been an avid hiker in my youth and I have ran up and down many a goat (cattle) path with no serious harm (I’ve rolled on a cactus or two, and was once terrorized by an angry lone heffer). I don’t mind taking a road not so traveled. The good news is, I get to help create the statistics. When I was in elementary school I had a teacher who would release us to the world on Friday afternoons with the ominous words “Don’t Become a Statistic”. I love this saying, because no matter how hard you try, you fall into the statistic... if you’re not in the 25% that do, you must be in the 75% that don’t. So I always took it to mean, “fall on the right side of the statistics”. I know I am not alone, and I know that there are those before me and those around me. And I owe it to those behind me and those in front of me to fight like hell to create positive statistics.

one of my favourite child hood hiking trails the "Sandcastles"

I am very lucky to be embraced

within so many strong and supportive communities. And with the help of everyone am able to take this drug regardless of the “coverage” issues. I am equally grateful for the fact that this drug is even available for me to take. However throughout this journey I have expressed concern about those that are not blessed with the supports that I have. What about the single parents who have to focus their energy on raising their families amid the treatments, or new Canadians that are just learning the basics of the language let alone the intricacies of all of the forms and bureaucracy that are involved in this battle. I am so lucky to be able to go ahead with this treatment, but that doesn’t mean I should sit back and ignore those that are not as lucky as I am. Moving ahead with this is about creating an opportunity for everyone to have access to this drug.

I understand that there is a system in place and drugs need to be researched. I whole heartedly agree with this process as it is important to ensure patient safety and ensure best practice. However, currently research exists; both of the Oncologists I have seen agree that the evidence supports a significant benefit to me taking this drug. If it was simply a matter of the drug being so new that they were still in the process of approving I would not be as concerned. However the message that we have essentially been told is, we are not looking into it because the company hasn’t requested us to yet. In other words, we are sitting here and can do nothing until this drug use has been applied for. I agree that this process should be in place, but I disagree that everyone’s hands are tied. More can be done, more should be done.  This process is long enough as it is when it is running smoothly. However this drug has hit a standstill and as it stands my understanding is that it could be years before the use of this drug is approved for stage 2 cancers in Canada.  And years is lives. I feel that we owe it to those who have fought the battle before us to pave the way for those to come, the best that we can.

I have to admit. It was a really tough decision to “go public” with this. Writing a blog for family and friends is one thing, going on the news is wholly another. Going on the news bald, well that’s plain terrifying! (It’s a good thing I got a hair cut yesterday and buzzed off all my “ghost hairs”). As many of you know, we decided to go ahead with this treatment regardless of funding due to the immense support of our family and friends. Going public has been about impacting the lives of those coming up behind us and that is where I gain my strength and energy to move ahead with this. Although it is a worthy cause, it has been both exhausting and daunting. But I have a saying and that is “I run on will power”. If something is important, you find the energy. And although I may not have my normal amount of energy I will have enough to see this journey through. Am I terrified? Yes! I have only done phone interviews so far and I am an absolute nervous wreck during them. Those of you that know me, know I am a nervous talker, so that makes me even more nervous.  However, I have another term that I use with confidence issues and that is “Fake it till you make it”. In different situations in my life I have been asked “why aren’t you scared” or told “you look so confident”, when in all reality I am scared out of my mind, so I guess what I’m trying to say is... eek I’m so nervous! Please don’t judge me!  (See that nervous talking bit there). Back on track here, I know that this journey is going to take a lot energy when energy is a bit of a rare commodity, but in the end I believe it is worth the fight!  Because in the end we hope to make a difference! Because ultimately that is what communities do for each other! We fight for those that cannot fight! We stick together and leave the world a better place behind us!

So we sign off today with gracious resolve to take the gift of opportunity you have given us and share it to pave a better path for those that are to follow!!!

LEFT FOOT! RIGHT FOOT!

Alyssa & Steve

Battle for Coverage

Hello everyone! It’s been another busy few weeks in our household. Steve has been working tirelessly trying to push down barriers just to talk to some of the powers that be. So the big topic of discussion that is going on right now is the coverage for one of the drugs that I am supposed to be taking. It’s a pretty complicated situation but I am going to do my best to explain it.  I apologize if it is a bit disjointed or hard to follow. I just finished a fresh chemo treatment on Friday and am still pretty beat down from it, however I felt it was important to get something out!  Please stay tuned as I hope to get another post up in the next few days.

I currently am fighting an aggressive form of breast cancer which means it likes to grow and it likes to grow fast. This meant that even though the doctors are treating the cancer, often times it can grow faster than the treatment can counteract it. Due to my age this “speed” is increased. Up until a few years ago this was some pretty scary news. Then this really neat drug was introduced called Herceptin. Herceptin is a drug that specifically attaches itself to the cancer cell to block it from growing. It has dramatically increased the survival rate of Her2 positive cancer patients. Herceptin is approved by the Canadian powers that be and I had my first treatment of it on Friday. The drug that is not covered is a close relative of Herceptin and does the exact same thing but on different receptors in the cell. In other words, herceptin “closes the front door” on cell growth and this new drug pertuzamab  “closes the back door”. Now this is where things get a little confusing.

The drug not covered is called Perjeta (generic name; Pertuzumab). During clinical trials, this drug has proven an increase in effectiveness when administered in conjunction with Herceptin as well as other drugs (which are covered and will be administered to me by the Sask Cancer Agency). Basically by including this drug, I have an 18% increased chance the cancer will completely disappear with chemo prior to the surgery. In short using this drug with Herceptin greatly increases my odds of kicking cancers ass!

Pertuzamab is approved in Canada for metastized cancers (cancer that has spread from its original source such as breast cancer that spreads to liver or bone) but not for non metastized cancers (cancer that is only in primary location such as breast cancer in the breast). The reason that it has not been approved yet is that the drug company has not requested approval for the use of this drug for stage 2 breast cancer in Canada. However they did apply for it in the United States and it has been readily available to stage 2 breast cancer patients in the US for almost a year.  Luckily I am able to take this medication as an “off label” use which means I can take it but the federal government, provincial government and the drug insurance company all claim it is not their responsibility to pay for this drug which foots Steve and I with the bill.

The Federal Government has been deflecting the blame on the Saskatchewan Government indicating each province is left to its own discretion in determining which drugs are and are not covered; this includes coverage for “off label drugs”. Additionally the Federal Government cannot approve a drug for which approval has not been applied for.  

The PAN Oncology Drug Review Committee is a national committee designed to review the efficacy of cancer drugs within Canada relative to several factors including drug costs. The Saskatchewan Ministry of Health has indicated since a PAN review has not been completed they’re unable to assess this drug and are therefore unable to provide financial coverage. Interestingly the same Provincial Health Care System has no issues providing us access to this drug which is not without its potential serious side effects as our Medical Oncologist believes the benefit to my health will far exceed any side effects.  Additionally, for a drug to be reviewed by the PAN Committee it must first be approved by Health Canada for this subset of use. Roche, the drug company who has successfully applied for this exact use in the United States has clammed up and won’t tell us why they haven’t applied to have this drug approved in Canada and we’ve been shunted to corporate relations who have not responded to our questions.

In short we are standing in a circle of involved parties who all have both index fingers pointing at someone else deflecting responsibility.

So we have been madly trying to fight to get this drug covered within the 3 weeks that we had notice that it would not be covered. Unfortunately we have not been successful. However Steve and I would like to ensure that we get the ball rolling for those that come behind me. To our knowledge I am one of, if not the first stage 2 breast cancer patients to be taking this drug in Saskatoon. And if I am going to blaze the trail I’m bringing a flame thrower.... lets open this path up to save lives!!! Because in my opinion it is ridiculous that this drug is sitting out there and people can’t take it. How many lives are being impacted by lack of access to this drug? Breast cancer is the 2^nd leading cause of death to Canadian women and 20-30% of breast cancer patients are Her2+ ... I’m no mathematician but that’s a lot of ladies! So it’s time to get the ball rolling. I’ not sure how we are going to achieve this but I’m German/Austrian, Scottish and Irish, that makes me a special kind of stubborn J which makes me specially equipped for this campaign. Rawr!

At this point Steve and I have exhausted all formal processes in getting this drug covered. The way things look now it will be impossible for me to have this drug covered given the current systemic barriers. However, we have now been in contact with the media to see if they can help get the ball rolling on large scale change to have this drug available to all Canadians who would benefit from it as this has now become our primary goal!

I think it’s important to state how overwhelming everyone’s generosity and support have been thus far! With your support almost half of the cost of my first treatment has already been covered! Thank you so much!

http://www.gofundme.com/AlyssaStrong