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