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To clot, or not to clot... that is the question.

Well, we have surpassed the one year mark since I was diagnosed. It’s been very interesting to think, what was I doing this day last year as it was quite a busy and tumultuous time. It’s been a long road! But Steve and I have been blessed to have the strong support network of our family and friends to pull us through. Now that we’ve completed the “real” chemo, surgery and radiation and are winding down on the herceptin treatments we are in the calm after the storm phase. Psychologically it’s been a bit odd, the best I can relate it to is standing outside after a catastrophic storm where there are branches all over the place, fences down, roofing shingles everywhere and nothing is where you left it etc. but the imminent danger is passed.  You sort of step back, look around and assess the damage and slowly start the clean up. Steve and I have been hard at work “cleaning up” and getting our live’s back to a new normal and it’s been a very busy few months.

One of the first changes was that I started tamofixin in the fall. This drug is intended to prevent the cancer from coming back. Unfortunately the side effects were pretty severe and included edema (Swelling limbs), rashes etc. Not wanting placebo to impact my treatment I did not read the information sheet. Well it turns out I should have. I had about 5 symptoms that indicated you should “Contact your doctor immediately”. Whoops, turns out the hives on my feet weren’t some strange reaction to snow mold but a reaction to the drugs I was on. They had to pull me off the medication and give me a breather and then start again. The second time was not great, but it was better. But boy it makes me all sorts of crazy. Aside from being the typical irish hot head I am a pretty level and reasonable person. That is until I was on tamofixin. I was a walking banshee. I was crying multiple times a day (Sometimes just sitting at my desk at work or watching tv... that mustard commercial is really touching). I would be raging angry, extremely elated and then horribly depressed.   Of course it was pretty hard to differentiate between the emotions from the drug vs the emotion of the trauma of cancer and cancer treatment.  It got to the point where I finally went to the doctor to discuss my options. Not willing to stop taking this drug but also not willing to take more drugs to balance my mood I was basically on my own to deal with the side effects. Luckily as time passed the side effects have leveled off. The most agitating current side effect is the hot flashes and the mood swings. But the hot flashes are kind of funny as one minute I’m freezing and the next I’m sweating. And I walk around in roughly 4 layers at all times.

As many of you know I started riding again in the fall. I had the distinct pleasure of working with a really cool new horse that I was training to go into the “battle of the breeds” at the Saskatchewan Equine Expo.  I was very excited as this horse would have less than 90 days of re-training on it and I really wanted to demo the potential of the breed. The week before the competition I started feeling sharp pain in my arms. It felt as if a blood pressure cuff was on my arm and was pressing tight. Then my arm started swelling, just barely but notable to me. The coloration was also a bit odd. Being a little stubborn I went to the barn and rode. It was pretty uncomfortable and discoloration increased. The next morning the pain came back and then my arm turned “THAT” color. The color that I have really only seen in 2 situations. 1) at the swimming pool when someone was under the water longer than they had intended 2) when I worked at the hospital and saw people having heart attacks. In short, there was not enough oxygen getting to my arm. It was time to stop denying the obvious... I had a blood clot in my arm. Feeling an ambulance was overkill I debated my options a) I could walk 2 blocks to the hospital from my house 2) drive to the hospital myself and 3)pull Steve out of work to fetch me and take me in to the doctor.

-          The scary thing with blood clots is if they move and get into your lungs or brain. The one thing with having a vivid imagination is that I realized how aweful it would be to have a pulmonary embolism while trying to walk to the hospital in -40. I had this vision of me in the snow freezing and being able to see the hospital from the side walk I was on but being unable to reach it. This just freaked me out further. I then turned to driving myself and realized this was also a horrible plan as if anything were to happen I could not only injure myself but put anyone on the roads in danger as well. This left calling Steve home. Steve was in a meeting and had to excuse himself get to his office and then walk to his truck.  Meanwhile I started getting ready to head off the hospital trying not to freak out but really feeling like a ticking bomb.  While I was getting ready our roommate came home. Hearing her come through the door I quickly opened up the entrance to our level and blurted out “can you drive me to the hospital right now”. Now luckily Sarina ,my roommate and one of my best friends, knows me pretty good and my abruptness did not freak her out. After a quick conversation Sarina whisked me off to the hospital all the while doing a fabulous job of keeping me relatively calm as internally I was freaking out, thinking of all the worst case scenario’s. Meanwhile Steve re-directed himself to the Cancer Center to get information as to which hospital was the best to go to/where to go etc. By the time we got to university hospital Steve had determined we should head to the university hospital emerge. Steve was at the doors waiting for me when we got there.

-          After a few hours of mostly waiting and an ultrasound later it was confirmed that I indeed had clots in the port in my arm and I was going to be immediately put on blood thinner called tinzaparin. This meant I was “grounded” again. This psychologically was worse than the pain from the clot. I was one week away from my goal. It was to symbolize me being back at it, it was my coming back celebration! Unfortunately it was not meant to be. So the next day I went back to work and the horse was moved out of the indoor facility and taken for a winter holiday in a lovely pasture outside.

-          It’s an odd life where one day you’re in emerge the next day your back at the office as if nothing happened. Tinzaparin is a bit scary as doctors aren’t able to reverse it. My original plan was “so long as I make it to the hospital they can save me”, to which the doctor outlined that indeed they may only be able to sit there and watch me bleed out as they cant reverse the drug.  He warned me that a simple slip in the kitchen could kill me. This seemed like a scare tactic, but after further investigation it would seem that he wasn’t that far off.  For those of you who know how clutzy and not particularly careful I am you can imagine the.... well you can just imagine.

-          So my first morning on this drug Steve turns to me and suggests that I wear a helmet on my walk to work. He was completely serious. I just started laughing. But he was completely somber in his request as I had to walk a few blocks to work and the sidewalks were typical Saskatoon winter sidewalks. This being one of my favourite stories to tell, I had a friend suggest that I carry a bike tire with me so that it looks like I'm just a cyclist walking down the street. I thought that was a brilliant idea, but will confess I have not tried it!

-          So fast forward a few weeks and I have been successfully bridged off of tinzaparin and onto warfarin. This is not only fantastic that I get to ride but I also don’t need to get a needle every day. I have to say my husband is a king of kings! He gallantly decided I would not be injecting myself and gave me all of my needles. He worked each day to figure out how to make them less painful as the tinzparin burned like a bee sting.  I have to say I am a pretty lucky girl!

-          So I am back on the warfarin and have just started riding again. Just in time to start the outdoor season! Steve has been pretty great at coming out to the stables with me to “keep me company” (ie. Make sure I don’t do anything stupid as I am still a bleeding risk). I enjoy having him around out there as the horse I am working with is still quite precocious and has a serious case of spring fever.

-          

Any ways, I’m sitting here plugged into my IV getting my Herceptin treatment and the Tea Lady has arrived so I best sign off so I get my tea and cookies (another perk to treatment!) .

‘Till next time!

Left Foot’n and Right Foot’n.

Alyssa

Cheers!

Hello everyone!

I just wanted to stop by and say thank you to everyone who has been following this blog! Steve and I are so very grateful to everyone for the support and help that you have all provided!

I finished my radiation treatment a few weeks ago and am just finishing up the worst of the recovery period. My skin in that specific area has come a long way. I like to think of it as a phoenix:  it was on fire, it burnt off, and voila a shiny new skin came bursting out from under all the crispy stuff!  Rarrr!!!

I The great news is that I have been so busy I have not had time to sit down and write. I’m getting back into the groove of regular life. The worst of my side effects are mostly gone and the swelling in my face and throughout my body has gone back down significantly. One of the after affects that I am struggling with right now is to maintain my finger and toe nails (the tips are starting to peel back and off as the chemo killed the nail and it is starting to grow. The trick is to never ever use nail clippers and keep them filed back as short as possible. A nail buffer cleaned up the surface and removed the worst of the ridges and helps with the peeling and a nice top coat clear coat gives it some extra strength while maintaining a clear view of what is going on.  The ridges are kind of neat as they show each of the 8 treatments like rings on a tree.

The great news is my hair is growing in, I have a proper fuzz going on now and it almost looks like I have just shaved my head. I know this now as a) children stare but don’t ask their mothers why I’m bald and b) adults actually stare again as they think I’ve just shaved my head instead of having been sick. It’s a nice change.

Life is slowly starting to find a balance more similar to before. However, it is important to remember that things will never be the same. It’s about building new normal’s for ourselves and moving forward.  One of the things I was most concerned about was getting back into work as statistics show that it can be very difficult to get back into the work place. I can attest to that. It is.  being a head down and charge kind of girl I went back to work a bit early and although I wouldn’t recommend it to many people it was the best thing for me as it was something I had to prove to myself sooner than later. I also believe that cognitively I would not be in the same place as I am now with out the “mental work out” that starting a new job brings. Sometimes the timing is just right as a great new position came available shortly after when I started looking. I have been so lucky to walk into an incredibly supportive environment where I can pop out for treatment and pop back in, or take rest days as necessary. My new work family has been amazing and I cannot be thankful enough.  Not only am I back to work I am also back in the saddle which aside from returning to work is the most significant part of my “previous life” that I had lost during treatment. I have a new project horse that I absolutely adore and am enjoying the progress we are making together.  So between the lovely new horse and the wonderful new workplace I am able to take my future firmly in grip and march forward.

Although we still have another six months left to  “ChemoLITE” treatments I believe the biggest events on this journey have past and now we are just writing the epilogue.  Because of this I believe this will be our last official "update" post.  I will leave the page up and when the urge strikes me to write I may write a little more however it will may not be for quite some time as any time not spent at work or at riding is generally spent resting.

We would like to thank each of you for following along and all of your love, support and concern during this crazy turbulent year.  I really struggle with coming with the appropriate words of gratitude as words never seem enough and seem so hollow. So please take our sincerest gratitude and remember that you have made a difference in our journey! Thank you!

As Steve and I are focusing on finishing up the new year, moving forward into the new year with our new beginnings and new outlook on life. We leave you and remind you, when in doubt left foot, right foot... left foot, right foot...

Merry Christmas!!!

 Steve and Alyssa

"Beware the Jabberwock, my son!
  The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
  The frumious Bandersnatch!"

He took his vorpal sword in hand:
  Long time the manxome foe he sought --
So rested he by the Tumtum tree,
  And stood awhile in thought.

And, as in uffish thought he stood,
  The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
  And burbled as it came!

One, two! One, two! And through and through
  The vorpal blade went snicker-snack!
He left it dead, and with its head
  He went galumphing back.

"And, has thou slain the Jabberwock?
  Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!"
  He chortled in his joy.

               ~ Lewis Carroll

Radiation Rundown

Nov 16 2014
Hello everyone,

I hope you are all well. Things are slowly starting to shape back into normalcy for me.  Well, at least a new normal. Radiation is going well for me. My fair skin is already a bit “sun burnt” but I am already a quarter done the process!  It’s pretty neat. I go for treatment every day and thankfully so far at roughly the same time. The staff there are all friendly and are very considerate as I explained to them my challenges with a wonky schedule and they have worked very hard to mitigate the issue.

Radiation treatment is more of an “inconvenience” than anything thus far. A typical treatment takes me to the cancer centre on the bottom level. Its pretty weird, the levels are not congruent. Ground floor of the cancer centre is one level below ground floor of the hospital. If you are on the main level of the hospital you enter the cancer clinic on its second level, I take a flight of stairs down to the main level  cancer centre where I went for chemo treatment wave at the lovely ladies at the front kiosk and then descend another set of stairs to the ground/basement level  where you go for radiation. First stop is at the check in desk where you are given the next days appointment time.  You then wait in the waiting area which has a very odd sense quiet of comradery as you often see the same people there.  Here you quietly wait your turn and hope the tea trolley shows up with tea and cookies... and it nearly always does!  When you get called you take your things to the change area and change. For me,  being the chest is the only part getting radiation I get to leave my pants and shoes on and just remove everything waste up and then put on a gown. It’s an interesting look most of the time. Dress pants and hospital gowns are a comical combo.  You then scurry to stuff your clothing in a locker before you drop your undergarments on the floor as the changing area is co-ed with change stalls. Feeling a bit foolishly mismatched you then sit down and wait for the treatment in front of you to finish. At which point you get to go into a room with a big Xray machine. You undo your gown and take your arms out of the sleeves and hop onto the table. Once in position you don’t move and the radiation therapists start adjusting and landmarking you so that you only get radiation where you are supposed to. They put a bit of sharpy marker over the tattoos so that they are more easily visible. Once you are landmarked they make sure the gown is draped in a more “modest” fashion and leave the room. At which point it’s you, the radio and the x-ray machine.  For myself my arms are stretched above my head and rest of myself is somewhat straight below. You see when they are tugging and pulling and repositioning sometimes you feel very crooked.  Like when you are laying on a blanket and someone pulls it from under you and you lay there thinking... well thats not right. But for this scenario it is right and there is no moving.

So you lay there for 10 minutes lost in whatever thoughts you have for the day just cold enough to not quite be comfortable but not cold enough to be uncomfortable.  But most importantly resisting the urge to sit up and start dancing around or something silly. Honestly, I spend half my time thinking how funny the staff’s face would be when they look at the observation screen and instead of someone laying down on the table statue still and then just having a party on the table.... it would be priceless... but I’m not really one to mess around with treatment so I keep the thought to myself.

One thing I have learnt in this journey is how to stay still and not move. It’s not something people really talk about or mention but I think it’s a skill every cancer patient learns. Luckily, I had some previous training about resisting the urge to scratch your nose or rub your eyes etc which is really the hardest part of not moving. It’s the cessation of subconscious movements. Or in other words, making subconscious movement conscious.  But nothing is as motivating as when you have a metal rod poking out your spine, a man sliding a tube into your heart via the superior vena cava, or highly potent xrays shooting at you.  Anyways, the ten minutes comes and goes differently every day. Some days it seems longer than others. One thing I can attest to is to not have caffeine before having to lay perfectly still for ten minutes, it’s an excruciating process. At least for me, think squirrel on red bull when its me on caffeine.  So I lay there inwardly vibrating counting down each minute as if it were an hour. After your ten minutes you get to sit up and put your gown on more properly and then walk thirty feet and go change. This part seems like such waste of energy, until I think about walking through the hallway with my hands holding up my gown. Nope! Not going to happen, so I climb back into the thing which takes longer to tie up behind your head than it does to walk  to the change area get changed and waddle your way back up two flights of stairs and back to the rest of your day.

The side effects of the radiation are not very bad. The main one being fatigue. Fighting fatigue is not abnormal for me so so far, it has not been too bad, however I have been warned the worst is yet to come. I was on a drug called Tamoxifin for nearly a month when I finally read the info sheet on it and discovered  I should probably talk to a doctor as the list of side effects I was having which preclude “contact your doctor” was longer than the list of side effects I wasn’t having. Whoops, so after a few days of waiting to hear back I was taken off of tamoxifin for two weeks to see if the side effects will subside. Ugh!  Coming onto and off of drugs is less than pleasant. But better safe than sorry.

Then on Friday I had a “double duty” day where I went for my Herceptin treatment (infusion on 2^nd floor cancer clinic) and then another waddle down the stairs to radiation. I will admit to feeling quite discombobulated but not really worse for wear. This treatment was the first infusion I have attended on my own. I read a book and chatted with a lady who was having her last infusion that day! It was really nice, we bonded over reading and our growing cynical sense of humour.  As my strength returns more and more the effects of the herceptin treatment become more pronounced as they are no longer my “normal state”. I struggle a bit with that, peripheral edema (swelling) and what i call digestive hell  are the two worst effects. One suddenly learns to ensure you know exactly where the nearest bathroom is at all times. It makes going in public a bit difficult if I have to eat. But there seems to be about an hour delay so as long as I don’t forget I can plan ahead.... the trick being, not forgetting.

In other exciting news one of my best friends has moved into our basement sweet and she is helping me focus on healthy lifestyle choices. For example she motivated my butt out of bed and to the gym where we did an “Arms day” and some cardio. It was my first time back in the gym and more excitingly my first time running again. I couldn’t run for long, or very hard but I could stretch my runners legs a bit. Unfortunately the neuropathy in my feet has not completely gone and I was a bit terrified my foot would just quit working. Luckily I never shot off the back of the treadmill into the wall which was a giant fear! No one wants to be the person that wipes out on the treadmill. But you definitely don’t want to be the bald girl who wipes out on the treadmill.... I got stared at enough as it was. But all in all I survived the gym with my dignity intact and was able to walk the next day so I deem it a success.

The past three weeks I have taken off from coaching and have been able to rest some. Yesterday was moving day for our barn and we hauled over the first half of the team and got ourselves settled in. Today I am back at it and will start up coaching twice a week again. I look forward to it and the entire indoor season as my latest project horse has arrived and I am anxious to get to work on him.

In summary I am anxious to move forward.  Unfortunately recovery (and hair growth) takes longer than we always first expect, but we take one step at a time and enjoy the opportunity to be in recovery!

So taking every day as a gift I leave you to your wintery Sunday!

Left Foot’n and Right Foot’n

Steve  & Alyssa

To Surgery or Not To Surgery

Hello everyone,

So the latest update is that I am now not going for surgery and will start radiation treatment in the next two weeks.

Let’s just say these past two weeks have been very stressful. I met with my medical oncologist last Wednesday which is where I was told I would need to go for more surgery but he was going to confer with the rest of the medical team.  So I spent the weekend getting my feet back under me after that blow.

Monday morning I received a phone call from the doctor who had done my surgery. He let me know that the surgery went really well and the pathology showed a narrow margin but as it was along my chest wall they could not go any further to widen the margin.  (Margin being the amount of cancer free tissue on the edges of the tissue removed). At this point I was royally confused and expressed my confusion as I had been told on Wednesday that I would need to go for more surgery.  The surgeon also expressed his confusion at this and said he would look into it. At this point I called Steve, who called over to the clinic to seek clarification and was rather abruptly told that I would be discussed at rounds the upcoming Friday as the Doctor had just told me. I would like to clarify that in fact the doctor had not told me that. He said he was going to talk to some colleagues casually and get their opinion before moving forward to a full rounds discussion.  However I realized that calling that person back would not be productive as I was feeling emotional and did not want to speak with someone who was rude as I did not feel I could be polite to them.

So then I decided to contact the medical oncologist who had told me that I would be going for surgery in the previous week to see if he had spoke  with the rest of the medical team. I left a message for his nurse to call me back. After waiting a few hours for a response I did not know what to do as my stress level was all over the place. My response to my distress and confusion was anger. I was so frustrated about getting one message then another and after having fallen through the cracks when it came to booking appointments (another frustration i will not delve into)I decided to head over to the cancer clinic for some answers. So I went over and asked for someone to come speak with me for 5 minutes about what exactly is going on as I did not want to wait until Friday for them to maybe discuss me at rounds.  After waiting for over an hour someone was sent down to tell me I could come back on Wednesday to talk with the Dr. I asked if it would be possible to talk to someone before then. I didn’t need a full appointment I just needed to be updated with exactly was going on.  After some more time my nurse came down and put me in a room to see the doctor. I think she was very frustrated with me. Which I completely understand as they were very busy seeing other patients. However, I also needed answers and was not comfortable in further delays.

So feeling a little sheepish but determined I waited to see my doctor. When he came he was very good and did not make me feel rushed at all. Even though I knew he was! IT’s very impressive how doctors and nurses can do that! Anyways he told me that he had been able to speak with the radiation doctor but not the surgeon and that the radiation doctor suggested we go for more surgery. However he needed to talk to the surgeon yet. I clarified that I would be going for some form of surgery whether it was a full mastectomy or just another lumpectomy. However the most important clarification was that this was not a big rush  as they were not concerned that cancer was left behind. If any was it would be microscopic levels. So leaving with some sort of answer I still felt very anxious but some semblance of order was restored.

Wednesday I receive a phone call that was booking me to meet with the radiation doctor on Friday. I met with him on Friday and was told that I will not be going for surgery as there was nothing more that could be done surgically.  He then explained that mastectomy has a comparable survival rate as a lumpectomy with radiation so my survival rate was not going to change. I asked him if he had any concerns moving forward without a mastectomy and he said no. So that was surprising and happy news for me.  So I asked how soon we could get started. Well, that day. Sort of. He went and checked to see if they had room for me to go get “landmarked”. I went down and got “landmarked” (my term not theirs). This means I have three tiny tattoo dots on my torso so that they can ensure an accurate placement of the radiation.

So radiation will start Thursday of next week. The exact number of treatments is unclear.

Until next time,

Left Foot’n and Right Foot’n

Steve and Alyssa

Post Op... or Pre Op...

Hello everyone!!!

I hope you are all are having a beautiful  weekend!

This is going to be a quick blog as I have been out enjoying the fantastic weather and am quit tired for my efforts. I am recovering remarkably quickly and feel very little discomfort. I went on  beautiful ride to day and even ventured into a bit of trot and then things got really exciting and a went for a wee bit of a canter! It felt great to have the wind whistle in my ears again... well lets be honest I wasn’t going that fast , but it felt great since it has been 8 months since the last time I cantered!

So my recovery almost complete I found out on Wednesday that I will be going for more surgery to do a mastectomy on the left breast. Boo urns! But it is what it is. I knew going in that I may need to go back for more surgery by taking the “less is more” route.  I just personally wasn’t planning on it being so soon. The reason I am going for more surgery is that the lump that they removed was not just one big lump but was many little spots and some were still live cancer cells. This means that they are not sure that they got it all as there is no way to check if anything was left behind. So they will be going back in and taking the rest out. Hopefully reconstruction can happen in a timely manner and I have a few more months until bikini season.

I will post more information and maybe a more detailed account of the last few weeks once I have a clearer picture of what exactly is going on.

Until then, we take one step at a time.

Left Foot’n and Right Foot’n

Steve & Alyssa

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 20^th 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!

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!

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 24^th. 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.

1.       Go to this link: http://www.runforthecure.com/site/TR/RunfortheCureFY15/PrairiesNWT/1246275873?pg=team&fr_id=1857&team_id=84046

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

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.

http://www.ctvnews.ca/health/life-saving-treatment-off-limits-to-saskatchewan-breast-cancer-patient-1.1907505

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.

http://canadaam.ctvnews.ca/video?clipId=396487&playlistId=1.1909227&binId=1.815911&playlistPageNum=1

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.

http://saskatoon.ctvnews.ca/video?clipId=396531

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

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

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