Saturday, 27 September 2014

Surgery Synopsis!

Hello everyone!
Here are my reflections on the events of my surgery!

First off, the surgery went well. They removed the tumor and 3 sentinel nodes. I believe this means that the cancer did not spread to the lymphatic system. However,  I think they also took out the lymph node that they biopsied in the spring just as a precaution. I am in very minimal discomfort and am in great spirits.

5:30 am – my alarm goes off and I decided it was best just not to get out of bed.  I weighed my options and considered what would happen if I just didn’t get out of bed. For me this isn’t a surgery or procedure I want to do, so there is really no good time to go but 5:30 am seems excessive. That said I would rather get it out of the way. I was not the only person who thought I shouldn’t get out of bed. The cat came and lay down on my chest. Which is his version of taking me hostage as he doesn’t generally sit there and also refused to move.  So after a few minutes of cuddles with the kitten I rolled out of bed drew on some eyebrows (not my most even or aesthetic but it could have been worse). Brushed my teeth and crawled into the car. We drove 2 blocks to the hospital where Steve dropped me off and went to find parking. Yes we only drove 2 blocks to city hospital as it was not practical to have me walk home post surgery so we had to drive regardless of the short distance.

Rise and shine!

6:00 am – arrived to admitting with and found a surprising number of other groggy people. I was happy to see that I was in fact not the only person who has chosen to forego makeup.

6:15 am – I made it through admitting for what must be at least the 20th time in the past 8 months and wandered up to day surgery. Where I learnt a few things. A) I got a private room with a beautiful view! Which is pretty fantastic as I figured I would be sharing with six people! This means I could “Cave-ify” the room by drawing the curtains and turning off the lights B) my surgery wasn’t until 1:30 pm. And C) there was more than surgery in store for me, I was going to get a wire inserted into me in a very similar process as the biopsies. And then I was in for a “painful” procedure where they inject radioactive dye into me. Whoop whoop :P, this is great news at 6 am. That said, I realized this would be a great distraction from being hungry.Anyways, I changed into my hospital gown and robe and they let me keep my knee high socks on, which is good because those hospital rooms are chilly! Steve hunkered down in his chair and started working on his laptop. I got comfortable and went to sleep.

7:30 am – the phlebotomist came in and drew blood. Then the nurse came in and started going over a bunch of questions and discharge information. The nurse also put on what I like to think of as “icing” because the way looks when it is put on. It looks  like icing on a cupcake. In reality it is a freezing gel that they use to help offset some of the discomfort of the radioactive dye injections.

8:00 am – I march down to the breast health centre to get the wire placed. I was originally going to be escorted down but I said I was fine to go down on my own and it was unnecessary.  Already changed I went almost straight into the room where I was having the procedure done.  I was really hoping the radiologist would be the one I had had previously as I  really enjoyed her, and of course  she had already established a strong trust from me! Unfortunately it was not her, however I had an equally nice and skilled radiologist in her place. The process starts off with some preliminary ultrasound imaging. Then the doc comes in and they create a sterile field and get to work. As expected (unfortunately not the “usual” for me) the most uncomfortable part of the process is the freezing being inserted. It was pretty quick, the freezing went in and then they stuck a wire into my breast that stuck out about 6 inches. This was pretty comical as it just sort of wiggled like an antenna or guitar string. The wire was very small and it was not in the least uncomfortable. So all in all the procedure went smooth. As something funny has to happen to me no matter how straightforward the procedure this time the lidocaine somehow squirted out the top of the needle and into my face landing mostly on my eye. Luckily my eyes were closed and so it didn’t burn much. I then went for yet another mammogram to ensure the wire was placed in the right spot and then the wire was taped down.  This time I got to sit in the chair, somehow it made the whole experience much more pleasant.
The entire time I was lavished with fresh warm blankets making the experience so much more pleasant. When in doubt get warm blankets, aside from them keeping you warm they just make you more relaxed and cozy.
A gamma ray machine, pretty cool!

9:00 am So with a fresh warm blanket and Steve in tow I headed over to nuclear medicine.  I went into the room with a gamma ray camera.  This is the same machine that did my bone scan that lit up.  The machine tracks radio isotopes that have been put into the body system. I drank the isotopes for the bone scan but this time they had to inject them. I am quite grateful that the tech and the doctor were both very honest with me and said that the amount of pain felt by the patient seems to vary but in short it won’t be comfortable and I can either squeeze a stress ball or Steve’s hand. I said I thought I would be okay without either. So they got me all set up and prepared for the first injection. I think I failed to mention that these injections go straight into the nipple and there are 4 injections. The doctor described it well. The discomfort is caused by the amount of fluid being injected in a short amount of time, similar to the discomfort of getting an immunization, but instead of going into your arm it goes into a “much more sensitive area”. So with a nod of ascent from me the doctor proceeded with the first injection which was like a bad bee sting. The second one was a bit worse, I’m not quite sure what my face was but Steve stood up pretty quickly and came over and offered his hand to me. I declined as I was “in the zone” and didn’t want to lose that connection. “In the zone” is how a deal with pain management. It’s like “going to your happy place” but just withdrawing into yourself so you are disconnected from the discomfort, there is no beach or anything.  The doctor did  the injections very quickly and it was all over quickly.   I got to lay in the bed a bit longer while waiting for the radioactive dye to travel from my nipple to my lymph nodes. Now of course we’ve discussed that nothing major ever goes wrong but it is me so something small had to happen. This time the needle was not completely attached to the syringe so the radioactive dye dripped out the side and fell onto the bandage holding my wire down.  They did the best they could to clean it up but it did draw out the process a little longer as we had to take a few extra images to ensure the images were showing the drips and nothing else. I however was not opposed to this delay because for some odd reason those super narrow tables are SOOO comfortable for me. I am not lying. I have fallen asleep in them twice and almost did again this time. I also didn’t mind as I knew I was in for a long and hungry wait before my surgery and any distraction from the hunger was a good thing!


my smurf outfit, complete with knee high socks!

10:00 am – so after my  not so comfortable excursion on the main level I wandered back upstairs to my waiting room carefully plotting/planning my next meal. I got upstairs and was prepared to watch Netflix until 1:00 however I slept almost the entire time.

10:30 am – the physiotherapist came in and gave me some post surgery exercises and discussed what to do if I got lymphodema in my arm. She was very friendly and had some great advice!

10:45 am – Doc came up to answer any questions I had as we hadn’t met pre-surgery. Sounds like he was as surprised I was getting surgery today as I was. He said “they must have snuck you in”. LOL! Anyways I really appreciated him coming up and going over things with me between his surgeries! That was pretty thoughtful! The most important info he shared was that I would be under general anaesthetic (completely knocked out) unless I felt strongly against it.  It was good for me to be prepared for general as I have never been put under before and was a bit anxious about not knowing either way, but with my less than consistent experience with local I was on board with the plan of doing general anaesthetic! Doc left and I pretty much slept my way to 1:00 pm.

Steve doing his Steve thing before surgery! What a lovely view out the window!

1:00 pm - I was ready for battle, had my pre-battle bathroom break (any athlete probably knows what I’m talking about, that urge to go to the bathroom right before the competition). We will choc this up to some evolutionary advantage that is just really inconvenient when you play an outdoor sport.


in the OR waiting room. Waiting.

1:30 pm - Steve and I joined another guy approximately our age (going for a knee surgery) and the porter, together we all took the elevator down to the OR waiting room. We sat down in some REALLY comfortable chairs and proceeded to watch some awful daytime television.  I believe we were watching the Social and they were showing these strange faces they had put together from the faces of good looking actors. It was very odd, but obviously distracting.  I then met a doctor who would be helping Doc Groot with the surgery (I don’t remember his name but appreciate him introducing himself), I met the resident anaesthesiologist and answered some questions for her regarding my medical history, she had a great bedside manner for a resident and I was really impressed. I then saw Dr. Groot and he answered some last minute questions. Then I met the anaesthesiologist and she was also really friendly. Lastly I met one of the nurses and answered a few more questions and then went with her to the OR. I gave Steve a last hug and marched into the OR. The first thing that struck me about going “behind the doors” was that it smelt like the vet college. Somehow this was comforting to me. Then I walked into a very clean and modern looking OR. This was also comforting.  Then I looked around and there were what seems like 10 people in the room, and that’s just over whelming.  But not discomforting as I know everyone has a job.  So I crawl onto the operating bed and get comfortable. Arms stretched out, I find out they won’t be using my port and will be using an IV instead. So far Im not a big fan of IV’s Since the second last time I had an IV I had a vaso-vagal reaction and nearly passed out because the IV was not put in properly and they power injected into my tissues instead. But the anaesthesiologist gave me a good reason to not be using the port so I didn’t make it an issue.
The resident proceeded to get the IV in, when students are learning you expect a certain amount of discomfort  with that aside it all felt fine until they went to flush the line. And that DIDN’T feel fine. I believe I said “NOPE!! That not right, that hurts way too much”, the doc looked at me and checked the IV, gave the clear to proceed and then also said “nope, thats not right”. I look over and it looks like I have a two inch by four inch fluid pocket forming on my wrist. I think it was the fluid from the saline flush and I am not sure what went wrong but I will be perfectly honest at this point I was done with pain after all the additional poking and prodding from the morning and then the practice jabs and readjustments that people who are learning need to take when putting an IV in. Now normally I am really patient with people learning on me and actually suggest to the nurses if someone needs practice to let them use me because I really don’t mind. By this point in my day, this was not the case and the only thing that kept my mouth shut was how nice I remember the resident being and I didn’t want to hurt her feelings as it really wasn’t her fault, I just have bad luck with IV’s.  So a few pokes later they found a new IV site and got things running without too much more discomfort as I just put myself in “the zone” again.  Then they started putting a mask over my face, and then told me it was just oxygen. I’m pretty sure my eyes got as big as saucers when I saw the mask. Which is funny because I’ve seen people get put under before, so I knew what was going on. But it is always different when it’s you and in a different environment.  Once I was breathing okay through the mask they gave me some drugs through the IV that made me feel loopy, sort of like that really drunk, the world is spinning feeling. Being a giant control freak this was comical because I was trying with all my might to fight this feeling. I tried to focus on the voice of the anaesthesiologist who did an amazing job of talking to me through the process. Then they added the sleepy stuff and I also automatically started fighting that feeling as well. I found it funny because my physical reaction was indignation “how dare this try to put me to sleep”, but I had to remind myself not to fight it and voila, I was right out!
 Next thing I know I am waking up in the recovery room. It was really gentle process and aside from waking up with nasal cannula’s in my nose which were really itchy I was perfectly comfortable. They asked me my pain level and gave me some morphine .... I think they gave me a second dose of morphine. I wasn’t an exciting person. I didn’t see unicorns or cry or panic. I just sort of woke up. However there was a girl who was crying. She sounded really upset and for some reason I felt like she was crying because they chopped off her legs (I think this is a combination of the drugs and my stance on when its appropriate to be crying in public). I am pretty sure I asked every nurse attending me if she was okay and if she was in a lot of pain. I was really quite concerned for her. Maybe the extra compassion was from the drugs, because I was very concerned for this girl. Then they gave me some water and I was really happy as it had been 20 + hours since the last time I ate or drank anything. Then I got some apple juice and I was elated!
The one thing that is not great about recovery is that they don’t have family members there to greet you (which I completely understand!!!) but I just wanted to see Steve and had to wait until I got back to my room to see him.  So all in all I had a great experience in recovery. I later found out that I had slept in recovery for about an hour before regaining consciousness. Which means poor Steve was getting a bit stressed as he had already talked to the Dr. and knew I was out of surgery but it was about an hour and half before I came back up (an hour of which I was fast asleep).  Another noteworthy thing that is pretty funny is that your sense of hearing comes back way before your sense of sight so I was really discombobulated for the first bit. I had fuzzy eye sight for quite some time before I could properly see, so I’m sorry if I sent some odd text messages, I really couldn’t see that well.  I also thought I had updated the blog but discovered the next day that instead of publishing it I only saved it as a draft. You will also note, that there is no more time line to this story as from the moment the knocked me out I have no concept of time and was not tracking it like I did pre-op. 

a veritable feast!

I don’t remember the stretcher ride from recovery to my room but I do remember seeing Steve and being out of proportion relieved and excited to see him! It was pretty fantastic! So happily re-united we hung out in my day surgery room. And they brought me some more water and some more juice and removed the nasal cannulas after I pulled them off to itch my face about 100 times (morphine makes me itchy).Then they brought me food.... not only  food, I got cookies, and a bun, and juice and the peice de resistance.... TEA! I was one happy camper! Then they went to take the IV out of my arm and I realized that in addition to the IV in my hand there was an extra IV in my elbow and a pretty good bruise a few inches below it. Not sure the story behind that but now I have 3 IV holes in my arm. oi! Then I went to get dressed to leave. Unfortunately I have gained 30 pounds since my diagnosis, so... when I went to button up the shirt I brought for post surgery... there was no way it was going to happen.  Nope, not the remotest chance of that shirt closing in any way that would resemble modesty (I could only do up the bottom 2 buttons). So on to plan b. Steve carefully helped me get my hoody on and then zipped it up to my chin! He then went and got a wheel chair and wheeled me out of the hospital to the car.  We then went to fill my pain killer prescription and get some grub because I was hungry. Steve knowing me very well had ordered us some pizza. Steve also bought the pharmacist some pizza because she was having a rough day.  Then we went home and I ate my entire half of the pizza and then fell fast asleep. Waking up intermittently to chat with Steve. Later in the evening Steve had an omg moment when we thought I was getting a wicked rash on my face but after he said it was my nose and eyelids I remembered that the anaesthetized people I had seen always had their eyes taped shut and the nose was probably from the oxygen mask etc they had on my face. Basically any and all tape put on me takes a little skin with it right now due to the chemo.  So that panic out of the way I took some pain killers and went back to sleep.

the random bruise and extra IV "hole" on my arm that likely has a boring story, but looks exciting!

The next morning I woke up feeling really good and to date I have not taken any pain killers. I am in just enough discomfort to keep me from doing something “unwise” with my arms. Rehab started as soon as I woke up and I will be going for the prescribed walks and exercises from the physio daily.

I have been very lucky with support from family and friends. One of my besties coming over to eat pizza and cheesecake with me and my EWA family brought me beautiful flowers. I am a truly lucky person to be surrounded by so many wonderful people!

Thursday, 25 September 2014

Post opp... doing great!

Hello!
I'm out of surgery and all went well! I'm on morphine dso I'm in an extra good mood! Thanks for all the support and well wishes!

Monday, 22 September 2014

Surgery Suprises

Hey everyone!

Well this post is a lot different than I thought it would be! Not to worry it is nothing serious or negative, just another change of plans. But this post also took me a week longer to write than anticipated, and one thing we have learnt about my journey is that plans can change in an instant.
As you all know, I met with my surgeon on Monday of last week. I hadn’t seen him since my original diagnosis in March and once again I was really impressed with him. He answered questions in a straight forward way and was very understanding and patient with all of my questions! We discussed the benefits and down falls of each of my surgery options. I also found out that we are most likely going to go ahead with radiation regardless of my surgery decision. When I pulled an unhappy face( or said something about being of the understanding I wouldn’t do radiation) my oncologist outlined that they wanted to throw everything they can at this tumour so that it is obliterated.  That appeased my sensibilities in a hurry as that is also my stance on the matter.
When I asked about the surgery date I was told it would be approximately six weeks until my surgery. I told the doc that he should book me in for something so at least I have a date and I will make a decision promptly. We discussed waiting to make my decision until after they have an opportunity to discuss my case at rounds again. They just needed to do some imaging first and of course rounds only happen on Friday and this is Monday. So It would be atleast a week before I make any decisions.
I am not going to go into detail about my different surgery options as I could carry the debate on for pages and pages however the most important thing to note is that my mortality rate (survival) does not change between a lumpectomy (removing the tumour and surrounding area) or a mastectomy (removing the entire breast and nipple and just leaving the skin) however the mastectomy reduces the chance of the cancer returning by roughly 7 %.
So with our minds overwhelmed and buzzing we left our Dr’s appointment and  met with our most fabulous Nurse Navigator who let us know that she had already booked me in for more imaging that afternoon. She also said she would be at rounds on Friday and I could give her a call after for an update. So I returned a few hours later for my THIRD mammogram(my first was at 18, second was right before I was diagnosed)! Blegh! In all reality they aren’t that bad and as a bonus there are no needles involved! I also went for another ultrasound (I lost count where I am at with ultrasounds).  The staff at the breast health centre are fantastic and make sure you are as comfortable as possible, ensuring you have a warm blanket, or two to stay warm in while you are in the super elegant and classy kimono that they give you to wear  ;- ) I also found out that rounds for the week were cancelled as too many people were away from the office and to just call the following Friday after rounds for my update. Since surgery isn’t for another six weeks this was a non issue for me.
The mammogram and ultrasound showed that the tumour had shrunk significantly (I for one couldn’t see it at all on the ultrasound or mammogram) so that was very good news but not unexpected!
So for the past week I have gone back and forth between decisions weighing the pro’s and con’s of my options. Steve and I have had a few conversations on the matter. However I am waiting until I hear what the plan was after rounds before putting too much energy into it. Where I was most fixated was radiation as I was not in any way prepared and lets be honest my biggest concern was, How is this going to affect my ability to get back in the saddle! So I pulled out this fantastic book that was given to me called “the Silver Lining” as well as my Mayo Clinic Breast Cancer book and did some research. It seems like the worst part of it will be that a) I am radioactive and b) it causes fatigue.
The other thing that I discovered this week is that just because I am done chemo, it does not mean that I just suddenly feel better. Now I know this seems logical and really like common sense and that I will have at least a few weeks of discomfort after chemo. But the reality is, that I will be recovering from this for months. My hair isn’t going to just magically sprout back into its regular thickness (Yes, I was prepared to wait for length, but not so much for thickness). It’s not that I don’t understand this, it is just that I did not mentally prepare for it. I was also not prepared for the prolonged recovery time of these last treatments. I saw my goal date of finishing chemo and told myself two weeks after that I would be moving on, however there is still so much more to go (infact another year of chemo infusions every three weeks) that it is not quite time to just move on.  I realize this now but am still very anxious to move on with my life.
Another thing I am anxious for is my eyebrows to return, as drawing them on without a “template” is a lot harder than drawing them on with my transparent but ‘at least still there’ natural eyebrows. I have been planning to take a no eyebrows, no eye lashes, no makeup, no hair picture but I haven’t got to it yet. I also think a cool picture would be to have make up on one side and none on the other as I don’t have eyelashes or eye brows to create normal facial features. An interesting thing about eyelashes. Showering without eyelashes is a bit shocking at first as the water just pelts into your eyes without mercy or warning. This I was not prepared for and elicited a small yelp the first time I went under the shower head. Now it’s all part of the adventure, but I’m ready to have some of my feminine features returned.
So, you’ve read this far and are likely anxiously scimming to find out what big change of plan has occurred. Well I got a call about my surgery date this morning. I was pretty excited as now I can plan my Halloween and months of October/November. Well, much to my shock, my surgery has been slotted in for Wednesday September 24th. Yes, this Wednesday. In fact its so soon most of you will probably read this after my surgery. Whapam! Just like that, surgery. Boom.
After a few stuttering moments, I clarified that I indeed am supposed to be going for surgery and that my surgeon is aware that it is me being slotted in for the surgery. I was told he had scheduled me in himself. That was good enough for me. The next question was “so what surgery am I going in for”, which is kind of a funny question when you think about it. I was told a lumpectomy. Which is perfect as that is the direction I was leaning in anyways.
I will admit that I am slightly disappointed that I might miss pizza and beer(I don’t really drink the beer yet) at aroma’s this week, but  I am pretty excited to get this surgery done and out of the way! I will not have time to sit and stress about making the right decision and before I know it will be writing my post surgery blog.  I am not sure how typing capable I will be after surgery but will attempt to post something along the lines of  “done surgery, in recovery” etc.

So, once again I sit back a little stunned at how I have somehow managed to circumvent regular wait times again. As nothing ever goes quite as planned for me I am very happy the “plan b” in this case is a change in schedule for the positive.  We take things as they come!
Lastly I invite anyone planning to attend the Breast Cancer Run for a Cure to join my team, there is a 1km option for those that are not keen to do the full 5 km. I know that I will be on the 1 km loop myself. Registration is $40, and if you register before a certain date your T-shirt will have our team name on the back.
2.       Click “Join Team”
3.       Click “Join as a new participant”
4.       Fill out the registration form
5.       Pay via credit card or paypal
If for any reason that link doesn’t work you can link from the main website
1.       Go to this link: http://www.runforthecure.com/
2.       Click “Join a Team”
3.       Click “Join as a new participant”
4.       If you search team name “left foot” our team “Left Foot’n Right Foot’n” will show up. The team captain is my lovely cousin Becky.
5.       Click “Join Team”
6.       Fill out the registration form
7.       Pay via credit card or paypal
 Please do not be shy joining the team! The more the merrier!
Signing off in excitement and anxious anticipation for the next few days to be over!


Left Foot’n & Right Foot’n ,
Steve and Alyssa



Friday, 12 September 2014

A bit over due!

Hello everyone!




It’s been another busy few weeks here at the Noonan house. One of my best friends came down from Regina for a visit and observed that this whole cancer thing is like a full time job. It’s amazing all of the things that I planned to do that I never had the time and or the energy to get done. But I am very happy to have had the time and the energy to accomplish what I have.



General Update:
I’ve now completed all 8 of 8 chemo therapy treatments. Which means it will take about a week for me to get off the couch and then probably about another month of recovery before I’m myself again. That said the process is not quite done yet.  Our treatment journey remaining is as follows:
  •           Recovery for a few weeks and then surgery (details of which we do not know yet)
  •          We will be doing Hercerptin infusions every 3 weeks for another year. Herceptin is one of the drugs that is currently in the cocktail of chemo’s that I am taking but the side effects are minimal. This means that the port will be staying in my arm for at least another year.
  •       We will be on an anti hormone treatment for another 10 years.
  •        Whatever else the future may bring J


another great day for a float


Part of my treatment causes pain but being in the water helps, so I was able to spend some of the beautiful summer days floating in my sister’s pool with my nephews who ferry me around and treat me like a princess! Tough life! I have been taking T3’s for discomfort caused by the chemo which helps get me through the discomfort. We are still battling ulcers in my throat but determined not to let them overtake me again as that was all kinds of unpleasant.


I’ve been slowly going crazy from not riding so Steve and I went on a nice trail ride out at moonglow  in August. It’s been years since we have gone for a ride together so that was really nice. I have to say I’m pretty lucky to have met a city guy that can ride horses. 


Next week we meet with the surgeon to discuss the post chemo surgery plan. I will admit I am a bit anxious as I thought we would have had this conversation a few weeks ago, and I like to be at least two weeks ahead in my brain.  We are ready to have a plan and move forward into planning our post chemo life! 



News Articles:
We realized that we never posted the links to the news articles that we did in July! So here they are:
The original written article done by CTV national news online.
The Canada AM interview with Ben Mulroney! We had to be there really early! And therefore we had to get up crazy early! I mean even earlier than horse show early! But it was a neat experience. Definitely a terrifying experience.
After our interview with Canada AM, Saskatoon CTV morning news asked us if we would do another interview that morning. We had an hour to kill so we drove around and came back for another interview.
Later that day I ventured over to the hospital where I was admitted to the hospital with Febrile Nutropenia (low white blood cell count and a fever) and spent my week in “solitary”.


Surprise Fundraising:
On top of the go fund me fundraiser there were three surprise fundraisers that were hosted on our behalf. I would like to thank each of these groups.
Monday last week we went up to Regina to meet with some wonderful people who had hosted  a surprise fundraiser for us. Here is a piece that Steve and I wrote to recognize their outstanding work within their organization.
-          “In the health care industry there is an assumed and strived for “patient focused” care; and in this case it also happens to be employee focused. Although we are all cognizant and all strive for improving the patient experience, some people go above and beyond. Alana, Amanda and her team have truly gone above and beyond in making a special experience for the Noonan family. We originally contacted Alana regarding a request for an appeal for a particular oncology medication which was very costly and denied for coverage by our Benefits Plan. Alana was honest and caring and thoroughly investigated the situation. After making inquiries on our behalf she provided us both candid and accurate advice. She then reached out on our behalf to several other interested in an attempt to assist with the financial burden associated with access to this costly medication. During the entire process even if unable to provide positive updates Alana genuinely invested her time and energy in our journey and her sincerity was apparent. Despite her best efforts, coverage for this drug was not approved. 
As a result, Alana, Amanda and the entire 3sHealth Benefits Administration Team then went above and beyond and organized a fundraiser to support us with this financial burden. They rolled up their sleeves, dug deep and hosted a fundraiser amongst the 3sHealth staff.  They successfully raised over $1000 which was a significant contribution towards reaching our goal. This sense of community is exceptional! The Benefits Administration Team really went the extra mile for us and we believe they deserve recognition.”

We had another wonderful surprise when one of the local “horse stores” or what we call tack shops ran a fundraiser for me over  weekend. In addition to the fundraiser they also designed and organized a tshirt as part of the fundraiser. They are really cool and I am really impressed with them and love wearing mine and seeing the support of those around me also wearing them! Greenhawk Saskatoon has always been a strong supporter of equine community, including the sponsoring horse shows and programs in Saskatoon and I was absolutely honored that they put so much work into this! The t-shirts can still be ordered or picked up at the Greenhawk location I believe. If there is someone outside of Saskatoon let me know and I can arrange to mail the shirts to you! It costs about $3 to mail as I have sorted out how to send them as “letter” post. I have to admit I had no idea this was going on and was having a pretty rough day when I found out about it. I was moved to tears and was awkwardly standing in the Dollarama checkout with tears running down my face, I was so moved! Thanks again Greenhawk!








Lastly Steve’s brother Sean had organized another secret fundraiser BBQ at two of the local Rona and Co-op locations. The Mystery Hockey team all pulled together and did an amazing job of hosting the BBQ! We were so touched by this! We were attending a wedding the day of the BBQ and didn’t find out until the day of (it was a big surprise, I thought Sean wanted to announce an engagement or something so I was completely off the scent).  We showed up in full wedding regalia between the ceremony and reception and were really touched with all the hard work that they put in. After the BBQ they presented us with an awesome card and a new hockey jersey for Steve for the winter season. I am looking forward to being back in the Mystery hockey family!


We will try to put another update up by next wednesday after the meeting with the surgeon to keep everyone informed! 
Until then,

Left Foot'n, Right Foot'n

Steve & Alyssa

Sunday, 3 August 2014

Better late than never!

Hey everyone!
Just a quick word to say I was released Friday evening! I keep forgetting to open up the old laptop and write this update as I've been having so much fun enjoying my freedom!

Hope you all had/ are having a great long weekend!

Left Foot'n & Right Foot'n
Steve & Alyssa

Thursday, 31 July 2014

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

Friday, 18 July 2014

My week in Solitary!


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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