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

HALF DONE CHEMO TREATMENTS!!!!

Hello Friends!

Treatment 4 of 8 ! half done chemo!

Today is an exciting day! It is my fourth of 8 chemo treatments. In other words... I’m half done my chemo treatments!!!! Whoo hoo!!! So that is cause to celebrate!!!! So everyone gets a beer or equally cold and delicious beverage on my behalf! This also means I am switching treatments the next time I go in. So I have a whole new protocol and symptom experience. This is too bad because my body has finally figured this out. To my fellow horse trainers.... chemo treatment 1 your body is like a sensitive young horse at the beginning of training, responding with every possible response, by treatment 4 it knows exactly how to respond to each treatment! It “old hat” and just gets right to work. Also I hate the unknown so while I am excited I am half done I am also apprehensive about the change in program.

get my calories while I can! This edible gift went down pretty easy! Thanks!

Things are pretty exciting around here but it seems it’s always a bit of a roller coaster. So as I had previously announced that one of the chemo drugs I am supposed to take (not covered by Sask

Steve brought me this good during my chemo today!

health) was covered by insurance. Well unfortunately, I got a phone call 2 days ago stating that “there was a mistake” and I am in fact not covered. In fact there wasn’t even an apology made on this “Error”. So needless to say we are pretty upset as I need to take the drug in 3 weeks! It’s pretty hard to jump through all the hoops in 3 months let alone 3 weeks. So at this point we are footed with the bill. Hopefully the Hammer of Steve will make things happen.

In other news I bandaged my arm before showering for the last time yesterday!!! Woohoo!!!! Today I had my stitches removed. And #HardwayAlyssa had stitches that weren’t too keen to depart! The situation is as such... Instead of all the stitches being connected there were three separate stitches. They each had about 7-10 knots in them. I have to admit I have never struggled to get 3 stitches out before. I am by no means an expert but I am also not inexperienced having had 8 sets of stitches over the years (I was an accident prone child/teenager). I was supposed to wait a full 14 days before removing them but I am a really fast healer.  I wasn’t sure how the chemo would affect that so waited 11 days and then took them out. By day 11 my arm was already healing around them. However the stitches did not want to come out. At all. Normally when having stitches removed it takes longer to walk to the cupboard to get the supplies and open the sterile packaging than actually removing the stitches (unless you have 20 +, that would take awhile), however let’s be honest there doesn’t seem to be much normal about my journey so it’s just another funny paving stone. Needless to say the first nurse was unsuccessful so we called over a second nurse. They continued to work on it to no avail. I of course wanted to be helpful so held up the “light source” so they could see the stitches better in my arm. Then they called the third nurse. They tried the delicate way and were quite ingenious in their efforts but those suckers were in for the count. So with some genuine apologies and my assurance that this was by far not the most discomfort I’ve been in so far she had to use a bit of force and just yank them out.  They were super tight and the knots were already embedding in my skin. Then they just didn’t want to pull out. In all honesty we were all laughing about it as it was way more difficult than it should be! I also believe that if I had waited the full 14 days to have them removed they would have had to cut me open to get them out, or let them grow out. So I am glad I had them out today.

unfortunately you cant see their facial expressions!

Today was also my first public chemo treatment! In other words I didn’t have a private room. The experience was good. There was lots of migraine triggers as you can imagine what a room full of 10 IV poles all running and beeping and the 25 people chatting in 10 different conversations would sound like. A really easy solution was to put head phones in! Boom problem solved! It was kind of nice to be in the war room with fellow fighters!

Trying to watch a video on how to give myself a needle. And other reading info...

Another first for me this week what using a port vs . the picc line! I do plan to post a blog discussing the experience and comparing a picc and a port. They both have their advantages but thus far the port wins hands down. In fact I would probably be out cantering in the fields if it wasn’t for my spine! My biggest fear was having to get another needle put in. thus far it has been really tame. But as far as needles go I have to admit the point of the port is to reduce the number of needles I use and right now I am up to getting two needs a month on top of the use of the port... bleh!!! Maybe that is why the port doesn’t hurt, all experiences are relative.  So relative to the needle in the rear the port needle is nothing. Lol!

1) my orchid is still alive! and 2) gorgeous new flowers from some lovely peoples!

Anyways in other news I attended a look good feel good program with Kate my alter ego and best friend (yes she is a real person but still my alter ego). Any ways it was pretty neat and is a wonderful program. And as an added bonus has some pretty fabulous swag! I even got some Hillburg & Burk earrings! And to top it off there were two other baldy bombshells there that were in my age range! That was awesome! So now I have two new facebook friends J

All in all it’s been a pretty solid week!

So till next time let’s keep it up...

Left Foot, Right Foot!

Alyssa!

Summer Fun!

Hello everyone!

Today we have a guest blogger! Everyone say hello to Kaylyn! Kaylyn and I are “chemo tanning” in the back yard today! What is chemo tanning you may ask? Well I’m not supposed to be in direct sun light but it is too nice outside and Dad and Steve have done too good a job of the back yard to not use it on such a gorgeous day!  So Kaylyn and I are stationed in a lounge chair each basking in the warmth of the day in the shade. 

Chemo tanning and blogging! By this point I've scrubbed off all makeup from my face....

Unfortunately we had a massive glitch when my eyes decided to rebel against life and it was all Kaylyn could do to keep me from digging them out of my face! I have never been in so much pain! Apparently my eyes are a little extra sensitive to sunscreen. Or maybe the brand I had is exceptionally bad. But none the less I was literally blinded with pain! Yikes! After a precarious jaunt to the grocery store and me stubbornly insisting I was fine and it was going to go away I finally gave in and we went to the pharmacy where I literally took Benadryl and eye drops before I even paid for them. Let’s just say there were a lot of people staring at the bald girl with a crazy henna tattoo big sun glasses and tears’ streaming down her face.... the pharmacist was lovely and helpful! Ever efficient I was also able to pick up my lupron injection!

So after a nap and a cold cloth over my eyes in the dark we were able to continue on with our chemo tannin.  Kudo’s to Kaylyn for just generally kicking butt and entertaining herself during my “time out”. So we are now lounging in the back yard with my beasts (Kelly and Drizzt) drinking sparkling water and raspberry juice... I call them spritzers. I don’t think that is their name but that is what I call them.

Chemo # 3... done like dinner! 

Anyways, I’ve been MIA for a couple of weeks. My apologies all is going well. I have completed my third treatment and am over the “rough part”. Each treatment seems to hit me a bit harder but all in all treatments go pretty smooth. This go around the sores in the back of my throat got pretty severe. When I started tearing up every time I tried to eat I decided I had to buckle down and get the prescription to help with that. Other than that it was business as usual.

In other news Kaylyn and Drizzt had a breakthrough in their friendship and had another cuddle outside!

creative juices are clearly flowing

One thing that I haven’t shared with you is my activity limitations given to me by my doctor. So as you know they have determined that they don’t think the “spot” on my spine is cancer however they have not concluded anything further. Therefore they don’t know what it is and until they do they must assume my spine is in some way compromised in that spot. Therefore I am on “couch potato” duty. I have been outright banned from the saddle and am not allowed to jog as I am not allowed to jog “aggressively”... but I look like I would be an “aggressive runner” so no jogging, only walking. I got a kick out of that. I have however been cleared to do yoga...but for some reason have not been organized enough to start. Needless to say I am pretty devastated that I can’t ride right now. I have a brand new saddle and some spiffy new stirrups that I am itching to use!  None the less in a few short months I should be cleared to ride. I am pushing for sooner but that may be a pipe dream. Luckily I am blessed with an amazing barn family and have been able to spend entire days immersed in “horseness” at the barn, enough that I almost forget I can’t ride right now.

Some of my students! You guys rock!

This upcoming week is going to be quite busy Monday has me at RUH GETTING MY PORT PUT IN!!! Woot woot! The port is similar to the picc line but is under the skin this means showering will be far less complicated and I can get in my sisters pool. And I may or may not do some wake surfing J this summer, wake boarding will likely be too high impact. Wednesday has me meeting with my oncologist and getting my bloodwork done. This is where I need to instill urgency on two matters 1) I need to get some genetic testing done and 2) they need to sort out my spine stuff and give me a better reason to not get in the saddle than “just in case”.  And Friday is Chemo day #4... this means I will be at my HALF WAY POINT!!!!!!!!!!!!!!!!! So now it’s time to start ruminating on my surgery options. I am pretty excited to be half way done. I will admit I am leery of a whole new set of drugs for treatments 5-8 but also curious to see the difference in side effects. Thus far my eyelashes and eyebrows have hung in there so I’m hoping they stick around for treatments 5-8. More great news one of the drugs that I am supposed to take was not covered by the health care system so I was looking at about $15,000. Luckily the drug companies actually have an entire department that lobbies on behalf of patients to their insurance company for coverage. And the drug is now covered! Hurray! So now I will be going to the fertility clinic to get my lupron injection, the cancer centre for 2 chemo drugs and a private clinic for another chemo drug.

Protein, carb, fat... a "balanced" diet! Tonight's dinner.

Other than that there is not much to update on. We hope you guys are enjoying the summer as much as we are!

Left Foot’n and Right Foot’n!

Alyssa & Kaylyn

My Experience with a Bone Biopsy

Hello everyone!

Well these are getting harder and harder to write! And it’s not for lack of inspiration but more lack of having a coherent theme or object of one post when I have about 8 floating around in my head. I am also struggling with the egocentric nature of blogging... so I apologize with the delay!

Last week I was able to share some amazing news with everyone and the response has once again been overwhelming. It was also the first day I truly cried! And I cried for about 5 minutes which is a really long time for me. I was so overwhelmed with a sense of relief and joy that it poured out of me in big gobby tear drops and a gushing nose! I genuinely hate crying... I feel very “uncomposed” that even if I start crying I control it very quickly so five minutes is an extremely long time for me to cry. The other more interesting reaction I had was a sudden onset of extreme back pain in the area of the biopsy.  Man did it hurt! My best guess is that this was a psychosomatic release of stress and tension as the first time I allowed myself to be “exposed” enough to acknowledge the discomfort the biopsy had caused. It took about 4-5 hours for the pain to start to go away, but the reaction was real and marked and therefore very interesting.

A lot of people have asked me what the biopsy was like. So I shall tell you the tale. J

I had a CT scan done which showed something suspicious in my spine.  Because I have copies of most of my images and a really awesome friend who showed me how to use the viewing program I can show you the suspicious area which is pretty cool. So the image that you see below is a side view of my mid section. The top of the image is my neck and the bottom of the image is my torso. Disregard all the organs and tissue and look for the spine.  Once you locate the spine start at the top vertebrae and count down.  It is the third whole vertebrae from the top. As you may notice all of the other vertebrae look pretty white where the 3^rd from the top has a big “grey cloud”. That grey cloud is the suspicious area.  It turns out that it is just a bunch of inflamed tissue. Now I know your next question. Why do you have that much inflamed tissue? The answer is I don’t know but am interested to find out. However, I blame my inability to stay on horses and or the inability to always stay out of their way when on the ground. LOL! In short, I’ve never been so happy to say I was schmucked into by a horse in flight in January, and then I “gracefully” took an unscheduled dismount in February, got conked in the head without my helmet on later in February  etc etc etc J  

This is the real image of my actual spine. All other images are googled and are not actually me!

Anyways when the doctors looked at this image and my understanding of what they said is that it was very likely cancer but they wouldn’t discuss what that means until it is confirmed due to the nature of that discussion. Then the next thing they said is that the location of the tumor (yes they called it a tumor) was very difficult to access and they would need to discuss the best plan of accessing it. They then brought me my scheduled biopsy time told me to take my painkillers before and after (I had permission to take the strong stuff J) and I was on my way.

So the night before my biopsy I packed my “hospital bag” found my missing kindle and then started stressing about not being able to eat or drink anything because clearly that is the most important thing in this situation(oi!).  But in reality it actually was a pretty big deal. You see, I wasn’t going into this biopsy at the top of my game.  As you may remember Wednesday we had to decide whether or not to continue ahead with treatment due to the delay it may cause my “if the biopsy was positive treatment” and we decided to go ahead. Then Friday was a bit of a gong show because my blood counts were lowish and they cancelled and rescheduled my chemo for Monday, and after all of that (about 1.5 past my treatment time) I ended up going ahead with the treatment on Friday.

Another thing we decided on Wednesday is that I wasn’t going to take my anti-nausea drugs to see if they were triggering my migraines as I suspected. Therefore my only line of defense against the nausea was to drink an obscene amount of water (4 Litres) and always have food in my stomach. Therefore not being able to eat or drink after midnight was in my opinion a rough deal but I promised myself I could eat by lunch. HAH! I was so wrong. So feeling pretty thirsty and hungry I loaded into the car with my pit crew (Steve, Mom and Dad) and we headed to the hospital. We got there went up to admitting  and was then sent to Medical Imaging where they promptly re-directed us up to day surgery (dear lean system... room for improvement). I got to day surgery and they gave me a bed to lay down in which was lovely because at this point I was pretty green around the gills. My biopsy was scheduled for 10 am however you are supposed to arrive by 8:30 am so I had plenty of time to get comfortable. The nurses explained to me as best as possible what was going to happen which included waiting 2 hours with nothing to eat or drink after the procedure.

So we got comfortable and settled in to wait for my turn. The day surgery room I was in had 3 beds. The gentleman in the first bed was quickly whisked away for his appointment. Shortly after an absolutely adorable senior citizen came in with his wife. They were pretty sweet but he got to eat right away and him and his wife discussed his toast and coffee for what felt like at least a half hour which along with the smell of his coffee and toast was my own special kind of torture. It seems silly, I understand, but really I was hungry and thirsty and really nauseas. So 10 am (my appointment time) came, 10 am went. 10:30 came, the nurse popped in to tell me that they were a bit behind. I said not to worry! I know that it’s a good thing to be the person who get’s bumped or delayed because that means you are not the person with the most imminent need.  Due to the nature of my diagnosis I know I have bumped to pretty high on the list myself so it felt good to push over and let someone in front of me! It’s a give and take. Then 11:00 came and went. At this point the nurse brought me a few sips of water because I was getting increasingly nauseous and thirsty.

 Finally around noon someone came to get me and I took a tour on one of the hospital beds down to the CT scan room. It was pretty busy down there. There were 3 beds and a lady in a wheel chair in the waiting room. One of the techs came out and told mom, dad and Steve that they should wait in the main lobby as it was pretty crowded in the CT waiting room. Steve stayed anyways and mom and dad went on their way. Then a guy came in with some EMT’s and had to wait with us shortly after his arrival so at this point the room was more than “pretty crowded”. Then one of the rooms opened up and with some fancy manouvers on those steering the beds there was a clean exit and entrance of the emerg patient into the lab.   Suddenly it was my turn... eek! At this point I will admit I wasn’t feeling too hot but remember thinking... at least I’m not the guy on the stretcher!

The tech that brought us in this time said that Steve could come in to the room with me for a while which was nice. So he came in and explained to me what was going to happen and that the doc would come in and answer any questions and sign consent. At this point I asked if there would be general ( knock you out) or local anaesthetic (like dental freezing). Because up until this point I had no idea whether I was going to be conscious or not.  You see I had decided for this treatment I was going to roll with the punches because, well truth be told... thus far having a mental plan was turning out to be more stressful because the plans kept changing and for a type A control freak thats pretty stressful. SO I was going in blind, hoping that would be less stressful. I found out that there would just be local anaesthetic which was a relief that at least that way the anaesthetic wouldn’t make me more nauseas after waking up.  I wasn’t sure how much more nausea I could take without keeping it together, or more importantly in. Then we met the doctor. I have to say I was impressed. He was very honest, to the point and professional.  Here is what he told us from my perspective.

•           Due to the location of the tumor this is going to be very tricky. In fact we may not be able to go ahead.
•           If we have to cancel I am pretty much SOL, they could try the surgery but the chance of a successful surgery was just as likely.
•       They had to come in from above and down at an angle to get into the vertebral body.
•       The vertebrae rests beside the lung, so there was a chance my lung could be punctured or damaged, this would not be good. But I am in a hospital and they are well equipped and prepared to deal with that event. 
•       They had to go through a  forest of  nerve to get there so there was a risk of nerve damage.
•       There is a chance that the biopsy process can crack the vertebrae. Which as you can assume, is also not very good. 
•       This procedure would take about 30 minutes to get set up and another hour to complete. 
•        He explained that at any point they may have to “abort the mission” but this is my best chance and he would do his best to make this happen for me.

I signed consent then we discussed the use of local aneasthetic. I told him that my experience in the past month leads me to believe I seem to absorb lidocaine like a sponge and I suggested he use as much as possible. He explained that lidocaine was hard on my heart; I explained how I could feel the last half of my first biopsy and felt the stitches going in on the PICC line. We discussed the difference between feeling pressure and feeling the procedure.  We also discussed him taking as many samples as he felt he needed. The more the merrier for me. As I had to do my breast biopsy twice (not due to lack of samples but damaged samples) and would like to avoid doing this one twice.

I then hopped off the bed and onto the table. I am a pretty narrow person so I fit on the table fine! This is a perk because I remember thinking... this is one small table! The cushion on the table is also not really designed for long term comfort. Its a 2 inch mat and I don’t provide much padding myself.  I laid on my stomach and they put a wedge pad under my forehead so my head was perched about 4 inches higher than the bed. Then myself and the tech’s mcguivered some blankets to provide some neck support for me as that wasn’t a position I could hold for an hour and guarantee I wouldn’t cramp up or move. We then tried to figure out what to do with my arms and determined the best place was to have them over my head and crossed sort of like a relaxed diving position and we were ready to roll.

They prepped me for the procedure. And I got another one of those aweful fake tans the health region keeps giving me J. They use a cleaning stick that dyes your skin orange (sort of like betadine for my horsey friends). Then they took the prelim image and did the landmarking where they wanted to go. The Doctor then showed me the image of the vertebrae, where he wanted to go, how he had to get there and just how close he was working to my lung. Let’s just say, I had a lot of trust in this doctor! He gets 10+ points for building rapport in 5 minutes!  

These are not my images. But the black blobs are the lungs. The needle is pretty obvious and the light bulb shaped thing the needle is in is the vertebrae. The angle on mine was a bit different but this gives you an idea.

Another image that shows where they had to go. 

The most painful part of the whole procedure was the freezing going in. And that is because as I have expressed before, I have hypersensitive everything strangely combined with a high pain tolerance. So when it is your job to tell the doctor if you feel any discomfort I have a hard time discerning what is normal and what is bad. You are lying on the table face down and feel a needle traveling through your shoulder and into your vertebrae and then when it gets there you started to feel some discomfort below your neck. And you lay there thinking do I say something or do I not. You don’t want to be a baby, but  he is working blind with a needle in your spine, he can’t see where in my neck the needle is... do you say something? He said to say something? But what do you say... it doesn’t hurt per say but with your neck cocked back and towels surrounding your face and neck conversation is limited. What do you say... ummmm “owe”. Doctor freezes, “what do you feel?”, discomfort right below the spine, more ache, not sharp”. He says “thats just the freezing going in.” And you say “Ok sounds good”. All the while thinking damn I was a baby and said owe when I didn’t need to. Ugh!

 So we moved on. And that my friends was the most painful part. Now I can only describe what I felt as I didn’t see what was going on, my face being buried in wedge pad and a blanket and such not. But I think what happened next was they took a really sharp really strong metal straw and put it in my spine into the location that they were trying to access and it stuck out of my back what I can guess was at least a couple inches. Although there was no pain, it was a little nerve racking as he was pushing through bone so it wasn’t a gentle process. I found myself wiggling my fingers and toes periodically just to ensure they hadn’t cracked the vertebrae and I was paralyzed.  Throughout the entire procedure the doctor stopped and CT scanned to check his location etc. I knew I was in competent and experienced hands. Once “the straw” was in it was pretty smooth sailing for me mentally. I still had lungs and I could wiggle my toes. Win!  

This was what it would have looked like to a spectator, except I was laying face down. The big Donut is the CT. They take a picture to check location. Pull you out. Do procedure. then put you back in to check . Do procedure... etc etc

Inserting the "Straw"

So the next step is to insert what felt like a mini hand auger but I have no idea what it actually was. And voila the first sample was extracted. The doctor was pleased to inform me that we had 1 sample! He asked if I minded going in for another sample.

Ready to extract a sample... I have no idea if this is the equipment they used... but it "felt" like this. I found these images after writing this blog.

bone biopsy sample.(Not mine)

 By this point I was getting pretty sea sick! You see everytime the CT was taken they had to move the table into and out of the CT machine. I am sure that if I was not on Day 4 post chemo which is one of more nauseas days and had I been able to take my medication or eat or drink water I would have been fine. But, alas that was not the case and this was the hardest part of the process. I felt like I was being rammed in and out of the machine with reckless abandon! Is this fair, probably not. But to all my friends who work in the health region, please note that if some one is coming in nauseas those beds are like hell! Lol! It’s kind of funny that the most uncomfortable part of a spine biopsy was the rides in and out of the CT but it was the truth in my case.   That aside a “heck yes take as many samples as you can” was muffled through my neck roll. A few minutes later he happily informed me he had an additional 2 samples from me taking him to 3! At this point he asked if I was okay to continue on for a fourth so that they could test for non cancer stuff as well. I said most definitely.At this point I was pretty relaxed! Honestly I was, no sedatives or anything.Things had gone so well, the doctor was clearly very skilled and it was the first procedure I have been to where there wasn’t any pain involved so I was a happy camper.  The doctor took his 4 ^th sample just as a slow ache was returning to my back, so however much freezing he used was perfect.  Then the extraction proceeded a few more trips in and out of the CT to ensure my lungs were good to go and voila. I got to move. I sat up and had a bad case of the shakes. I seem to get the shakes when I have lidocaine. It’s funny because I think I always look worse than I feel. I moved over to the hospital bed and was whisked off to XRay. We ran into a friend in the medical imaging que and chatted with them for a bit before heading in for another chest XRay. I passed muster and was sent back to my bed and waited for a porter to take me back up to our room. I was able to meet one of Steve’s work friends who I had never met before and he was so kind as to wait with us and chat. I know how busy their days are so really appreciated it!

Another room with view!

It was back up to day surgery for me and I was pretty excited to see that I had the room to myself.  Even better news was that I was allowed to eat and drink relatively shortly after arriving as it had been long enough after his orders. Let me tell you apple juice and toast have never tasted so good! I then spent the next while resting and texting my family and friends letting them know I was okay.

never far from my phone!

Around 4:00 I was given the nod to go home so I stood up to get dressed. And promptly re-seated myself. I stood up again... and decided to reseat myself again. At which point we tried adding some fluids in me (more apple juice! Woot woot!). Unfortunately that wasn’t enough and I was still wobbly like a newborn foal. So Steve ran and fetched one of the wheel chairs to transport me.

Sitting up ready to go home!!!

 I was pretty annoyed but at the same time realized that it was a necessary thing as I knew i wasn’t going to make it all the way to the parking lot without going down. And lets be  realistic, falling after having metal rods jammed through your spine and  4 chunks of bone removed is not an ideal situation. So I had my first trip through the hospital in a wheelchair.

What’s interesting is that although I am bald and was rolling through the hospital in a wheel chair I don’t feel like a “sick person”. I am sure I looked like a sick person but I feel strong and healthy and ready for battle just a little banged up from the lidocaine.

After a few days of “bed rest” ie) me sleeping for awhile and then my parents chasing me around the house trying to get me to sit or lay down I was back at it. The pain in my back was minimal. It wasn’t until a few days later that I remembered I was supposed to be taking advil and Tylenol and whatever pain meds I needed. I had forgot to take them the day of the biopsy and then completely forgot afer the fact. There was a bit of muscle twitching in my shoulder, and my back still aches if I sit or stand for too long, and driving along our beautiful Saskatoon spring roads caused a certain degree of torture but other wise it wasn’t too bad. That said my first biopsy(breast)  had me travelling across the world  and then I spent the day battling the winds at the helm of  40 ft boat.... so.... relatively I was doing a grand job of resting.

My feelings on bone biopsy is that they are another miracle of science! It is amazing what medicine can do! Thanks to the Doctor, and all of the staff at RUH involved in my biopsy, you were all fabulous and made the experience much better!

To top it off, as you know the results came back clear! Which means I do not have cancer in my spine. So I get another kick at the can :D I am now happy we went ahead with the 4^th biopsy sample as it will help determine what is causing the inflamed tissue.

In conclusion the biopsy was much better than I expected and I came out no worse for wear!

Celebrating the good news with the most delicious coconut cheesecake in existence at Alexanders!

So till next time,

Left Foot , Right Foot!

Alyssa & Steve