Bone Biopsy Complete

Hello everyone!

A huge thanks again to everyone for their support and love. Just a quick update that the bone biopsy went well today! I have spent almost the entire day resting but wanted to let everyone know that we are doing really well and the procedure was far less uncomfortable than predicted! We had great treatment from all staff involved and I've never been so excited about a piece of toast before! I will update more in the near future but for now I'm trying to catch up on my fluid intake!

Regards,

Steve & Alyssa

Moving Targets

Hello everyone!

My army of buzzed blondies! 

I know we have all been waiting for an update. Unfortunately we did not get much of an update. Wednesday started off with a trip to the Cancer Clinic. We started with some blood work and a dressing change. Dressing change days are my favourite as everything is clean and tidy again J The staff there are a lot of fun and we talked about my beautiful charm bracelet and the new charm that I got  Wednesday from a close family friend.

Our serious faces!

After my dressing change we met with Dr. Sami. This was the first time my parents were able to meet Dr. Sami. We reviewed the impact of my first treatment and came up with game plans for some of the minor road bumps I had found.

It's a jungle out there...

When life gets bumpy... get a helmet!

We then discussed the bone scan. The bone scan showed that there is a suspicious lesion in my spine and we will require a bone biopsy. Unfortunately it is not an easily accessible area of my vertebrae and will therefore require a “special” biopsy which takes longer to co-ordinate. However they have me scheduled for Tuesday.  Wow!  It will take another 2-5 days to get the basic results but they are going as fast as they can!  As soon as we have results our doctor will discuss with us what it means and what the new game plan is. Mean while we will continue with treatment as planned for today as the chemo is still somewhat effective for metastasized cancer and will do no harm to my treatment.

On Wednesday evening my sister Shannon and her 2 boys came over and we shaved Nates head and Josh’s Mohawk disappeared! We had a wonderful evening.

if all horses were this easy to clip!

... it was the movie... not my unfinished clip job!

pictures are worth a thousand words... but this picture doesn't do justice!

Thursday I spent the morning on the phone with the EI program. I have to say they sure make things quite difficult to get things going. On the bright side I finally got paid from my job (as some of you know it was a bit of a run around) but am still waiting on an ROE and until then no EI for me. GAH! So frustrating! Fortunately one of our friends who happens to know a thing or two about legal stuff offered his services free of charge; I signed my will and power of attorney as this is something I’ve been neglecting for a number of years. He was incredibly generous with his time and expertise!  Upon arriving home my two cousins Becky and Marla had arrived with a gift from Clan MacDonald! Yet another ubber gift! It was jam packed with awesomeness!!!! Kelly got some rawhide bones, Drizzt got his favourite Temtpations Cookies, and Steve got some pretty great goodies too! So much awesomeness was in the basket that I can’t even begin!  Clan MacDonald has struck again! Opening all those gifts got us pretty hungry and we all went for lunch! After lunch I had a nap and off we went to Mykah and Mikes birthday party!

Clearly we are not related!

Keeping busy during all this waiting has been really helpful in not getting too fixated on any one idea. I also have been blessed with 2 beautiful new charms one from the OHagan family and one from Mike and Roland! Thanks so much everyone! I get to carry your support with me every day!

properly kitted up to fight like a girl!

Wake up call from this crew...
and Josh' surprise shirt! It was all his idea!

So this leads up to Friday. How do you spend your pre-chemo morning? Playing video games and watching  Cloudy with a chance of meatballs 2 with some pretty special guests!  Then mom gave me my “Free Spirit” charm which happens to be a silver stead (horse)!!!  And off to chemo we went. We got there a bit early and the phlebotomy lab(where they take blood samples) was still closed. So we got comfortable and Ashley showed up for a few minutes to cheer me on! Then I went to check in 15 min early for chemo and time started passing slowly. Big shout out to my friends on Snap Chat who kept me entertained. I have misplaced my kindle and burnt through most of my cell’s battery on snapchat. Thanks guys! You kept me smiling! An hour after my treatment was supposed to start my blood work had still not come back. Finally they came out and told me my count was too low to proceed with treatment. What does this mean? In my best attempt at the “short story”... Chemo kills all fast generating cells in the body. This includes the cells in the body that fight infection. About a week after treatment is when your cell count is lowest and then it  slowly builds back up over time and in general my counts should be back near normal ranges by week 3. In other words just in time for my next treatment. 

Today I was just below normal ranges. My oncologist was not in so the decision went to the Doctor covering for him. He decided to err on the side of caution and wait till Monday. So we prepped to leave. We decided to take a copy of my blood work, because I like to have copies of everything. While we were waiting for the copy to be made my nurse got a hold of my info and called the doctor back. As she is more familiar with my regular oncologists practices she came out and explained the situation and said that normally they would proceed with treatment but the other doctor was being precautious.  Therefore  I could choose to proceed with my scheduled chemo on Monday or proceed with my scheduled chemo that was 1.5 hrs ago. We chose to bully on and get treatment today. Thank goodness I am a decisive person because these on the spot decisions are tough to make. There were implications, pro/cons etc for both choices. My two major ones symbolize the balance that cancer patients all likely have to face. Treatment/Life balance. If I move my treatment that impacts my scheduled life. It also had implications for my surgical bone biopsy on Tuesday. On the bright side we got a private room as it was so late in the day and it even had a pretty great view. Woot woot!

still have no idea how to get this setting, only my parents can do this.
 but it is fun to have! My scenic view during treatment!

As we were walking out of the house the postal guy delivered this gem! A pink and white broncos hat!

Then we wandered home and had supper. After supper I had a much dreaded shower. Honestly if you have ever tried to bath a cat... that is how much I was trying to avoid it. You see my hair started shedding a few days ago but the intensity got pretty strong today. Showering however makes it much more prevalent. When you shower your pores open up, freeing access for the hair to come out. Now my most interesting challenge is that I have so much damn hair! Even shaved its insane. Honestly we were pulling out clumps of hair today, there was hair everywhere and it clogged up the shower drain! So I had a post chemo shower in which Steve was plucking my head like a chicken... any normal person would be bald. But no... I now look like a freshly hatched bird..... hopefully tomorrow will be better. After emerging from the shower looking like I had just clipped 3 rambunctious horses and covered in little 1 inch hairs we pulled out the lint roller. It started on my arms etc.... and then we discovered it worked great on my hair. So no word of a lie.... Steve lint rolled my head and it worked great!

oh dear.. this is happening.... 

All in all it was a typical day in my treatment.... go in with one plan, come out with another! We just gotta keep rolling with the punches. Lay anchor and ride the storm!  And icecream, we can eat ice cream! Have a great weekend!

in case blizzards weren't tasty enough...
now they come in a waffle cone!

So we just keep left footing and right footing,

Steve & Alyssa

Josh - the super nephew!

Hello everyone!

We have no medical updates today but I do have a great post to share with everyone!

My nephew Josh upon finding out that I was going to lose my hair asked if he could also shave his head. So yesterday at Easter dinner we had a Josh shearing J

Here are some pictures to enjoy of shaving Josh’ s head. We stopped to take a picture of his Mohawk but decided to leave it for a few days J

The first buzz is always the worst buzz!

Wine and clippers, a dangerous combination. Good thing I was drinking tea!

Even Ellie came to watch!

Phew! Shannon is still smiling! 

Unlike horses I can stand directly in front of Josh without fear of getting kicked :)

Josh earning his keep holding the hair gel.

yah! Baldie buddies!!!

I was trying to get a side profile of Josh's mohawk, clearly that didnt work!

The shearing was followed by an intense game of dominoes

Dad, Steve, Nate, Grant, Josh and Heather

a better view of his new do!

Selfie attempt #1

Selfie attempt #2!

Thanks agian to Josh for being such a great nephew and shaving his head to support me! You look awesome buddy!

Battle Plan 2.0

Hello everyone!

Well I will start with the good news! After some more “exploration” regarding how this blogging stuff works I discovered that I was unintentionally making everyone who was trying to comment's life more difficult due to our settings. So I have adjusted the settings and hopefully it should be really easy to comment. You can just comment as Anonymous.

The other good news is that I had an echo cardiogram done and my ejection fraction is 61. The average EF is 58. So my ticker is still strong! Not really a big surprise but it counts as good news J

Unfortunately not all news is good news. I went in for a bone scan on Wednesday to check the spot on my third thoracic vertebrae. Sounds like it lit up the screen. Which isn’t good news, but it is not conclusive news either. So the next step is to get a bone biopsy on my spine. Youch! We all know that’s going to hurt! I’m not particularly fond of getting the test but I do look forward to having it behind me and having definitive answers.

A care package from the Gerstmars in Calgary! Loved it all!!!

If it wasn’t for Steve we probably wouldn’t have any answers at this point but he is so incredibly on top of things we are getting our results faster than my oncologist is reading them.  We called to get a preliminary report (the first radiologist’s opinion). We were told that the test was done but a doctor needed to access them and deliver them. Cue my awesome GP Dr. M.

We got this news as I was literally stepping out of the shower and I was on Alyssa time, which is “last possible minute time”. So I had my mom call the doctor’s office while I dressed and painted my face J.

It’s not very often my mom uses her “mom” voice but when she does I would recommend just doing what she says. It would seem that the admin assist agreed with my conclusion. I don’t blame the lady either. She was just doing her job. You see, my doctor was all booked up for the day and was leaving in the afternoon. So the first thing she said was “Dr. M--- was not in this afternoon”. Well the problem with us Gerstmars is we are everywhere at once (safety in #’s) and my sister who was standing beside my mom had just happened to have seen Dr M--- an hour ago for an appointment. So, my mom clarified that Dr M was still in her office. The lady confirmed but said we couldn’t speak with her as she was in appointments and the soonest we could see her was the 29^th. Well, let’s just say “Cue mom voice” where my mom politely(truly it was very nice, but its still MOM voice) informed her that that was not going to work and Dr M--- personally delivered me into this world and that if she would be so kind as to deliver the message to the kind doctor , Dr M could decide for herself if she had time.  Of course Dr. M pulled through and made the call and delivered my results to me! Basically just because she is the best GP!

Now, as you all know I always have the most awkward timing. For example I once quit a job in the middle of a jump lesson (and I never answer my phone while in a lesson but they called 3 times so I thought I should answer it). Another time I accepted a job while at the barn and simultaneously the horse I was grooming spooked and started pulling back so I just randomly started saying “easy... easy...whoaa... easy” into the phone much to the confusion of my new boss. I’ve been knocked out cold while on the phone.... bit by a dog while on the phone, now that I think of it I could probably write a short story about all the stupid stuff that’s happened to me while on the phone. So all in all this story isn’t nearly as awkward as those situations. That said, I was at city hall renewing our residential parking permits. I’m standing in line with Ashley trying to decide which lady looks less scary and who we hope to have to go deal with. Let’s be honest it’s not that I’m particularly scared of people but more because it was Ashley and I, and we just do these sorts of things. We are in luck and my “pick” opens up. I take one step forward towards her kiosk and my obnoxious ring tone goes off and is ridiculously loud. I look and see that its Dr M--- and do this wierd “I’m really sorry I have to take this call” face and hand gesture and scurry off to take the call. So Dr. M--- drops the bomb(In what I believe is the most warm and kind way possible), I get off the phone and mom and Ashley are hovering around trying to get results and I’m damned if I’m going to lose my spot with the “nicer” lady. SO I gave some signal the news wasn’t ideal and march off to get our parking passes. The poor lady at this point can tell something not great is going on. I’m texting Steve the news. My cell goes off again, I pass it off to Ashley, Ashley is walking around talking to Steve, and then mom is walking around talking to Steve.  I then realize I don’t have my wallet and am now trying to wave my mom down and then had to have my mother pay for my parking passes. All in all it was a very weird situation. After which I decided to go for a “chicken sammich”.  Ashley’s work was amazing enough to put together a really sweet basket which included a gift certificate for BP’s. So off to BP’s we went.  Dad and Shannon joined us and we had a late lunch. I happened to crush 2 bellini’s (the only drinks I’ve had since chemo) so was feeling jovial. We had a great meal and then went to the Gap where in less than 10 minutes I’d selected 3 shirts and 2 pairs of pants and promptly decided I should leave the store immediately before I spent a lot of money.

As I’ve stated in earlier posts, one of my big hang ups has been having this picc line in my arm. It’s not very decorative and it’s really annoying for showering and worst of all the combination of Picc Line and horses makes me a little queasy. But the picc line and myself are now friends. When I went for a bone scan they used it to inject the dye and I didn’t need to have an IV put in! Win! I didn’t think I cared about having IV’s put in, until I didn’t need one put in.  I have also finally found a relatively easy and sort of fun way to keep it dry. Step one, find the cutest doggy disposal bag (unused) in the dog closet. Cut the end off the bad and then tape the bag around my upper arm. Then get some vet wrap... in any fun color you choose and voila! Water tight arm protection that doesn’t make you feel like a total door knob!  Further more my Grandma and Aunt have knit me what I have dubbed “arm cozies” to hold/hide my picc line. And they are awesome, and I match them with my knit scarves, and toques, and I love them.

Lastly I want to share that we booked tickets to go see Cavalia-Oddesseo in Calgary and I’m pretty much over the moon about it. It was a bit of a gong show booking the tickets, complete with me in full blown distress, and Steve and Kate saving the day and we have great tickets!

my phone is more discombobulated that I am

This post is extremely scattered and harried. But it’s a pretty clear depiction of the way my day and brain have been thus far. We will keep you posted as soon as we get more information, even if it’s just a short line or two to update everyone.

Happy Easter,

Left Foot, Right Foot

Steve & Alyssa

1 week under our belts!

Good afternoon everyone!

I hope everyone has been able to enjoy this fine weather we are having! I know it has been an immense pleasure of mine to watch the snow melt away! It’s been another entertaining week. There have been ups and downs and all sorts of weird things which I will try to include.

Last we talked my body was working to sort out the discomfort of chemo. Lots of people have been asking how I feel etc. Truth be told half the time I don’t know as it is always changing. The best “overall” way to describe my reaction to chemo may be a bit melodramatic and indicative to my relatively young age however, please note, it’s not indicative of my lifestyle.   But chemo is like a really bad hang over. When you feel really sick and shut down your whole body feels ill, this is not how I generally feel. Instead your body feels full of life and energy but full of toxic “stuff” and you just want to get it out. If I can just get rid of the chemicals I would feel fine. My body was constantly trying to “deal with the stuff” and has been quite frustrated that it can’t just filter out the chemical.  I give my body huge credit as it has tried everything and will not give up fighting the chemicals and feel “ill” instead it feels “invaded”.  I have made a rule to always walk somewhere every day. Whether it’s to take the dog to the river or to wander down 4 houses to city perks, I must get out of the house.

  Monday rolled around and I was told that for some people this day would be one of the worst in the cycle. So, I was determined to conquer the day. The morning started off by sleeping in and a nice breakfast followed by a walk with my parents and my dog. We walked for about an hour and I really enjoyed myself. We walked the river and I was teaching my mom how to walk my dog “properly”. Soon my mom was marching around with Kelly tight to her hip, focused and no tension on the leash! I was so proud! We got home and had a lovely lunch. Steve came home for lunch and brought yet another amazing gift from the HR family. Their generosity is astounding!  My friend Kate showed up to help me get ready for the rest of the day. An old friend of mine is a very talented amateur photographer and offered to do some photos of me and “my hair”. It was such an amazing gift.  Kate also offered the use of her beautiful steed Henry. Henry is a very special horse to me as he was the first horse I trained after being off riding for a year due to an injury. I worked with Henry for almost three years and he became one of those “special” horses that I connected with very closely. 

I am so lucky that my best friend bought him as he even now remains a part of my life J  Kate and Jessie were amazing and treated me like a princess all afternoon. I was a bit distraught over breaking some of the rules like going into the bridle paths without a helmet but as Kate says “you get to play the cancer card every so often, this is that time”. So off I ventured into the woods with my mighty steed and photographers in tow. It was a truly amazing afternoon! After arriving home, and crawling into bed for about 10 minutes Steve proposed we go for pizza. Never one to miss an opportunity to eat pizza I lumbered out of bed and off we went for pizza (and a scoop of ice cream) with our traditional Wednesday night pizza buddy Reis. It was delicious.

I am very lucky that I seem to have no problem eating. In fact I may possibly love food more than I did before. What is interesting is that my taste buds are changing and food tastes quite different.  For example I tried eating a smoked oyster yesterday. Now I didn’t enjoy the oyster but it didn’t send me into a fit of abhorrence at the first scent of it and that is a big change.  Another funny thing with me and food is my new found obsession with chicken sandwiches. I crave them all day almost everyday, it’s quite funny!

Anyways Monday was a wonderful day but it might have been a bit too much as the next day my lymphatic system rebelled with a vengeance. For 2 days I was “all gunked up”. I felt aweful and disgusting and was getting what I called pockets of silly putty all over my body. At this point all I wanted was an oil change. I just wanted to go to the hospital hook up to an IV and have them fix me. There was so much gunk and nowhere for it to go. I had to increase my water intake to around 4 liters. 4 liters is A LOT of water! But it started to work and the gunk started to disappear and now I am not full of silly putty so I feel much better.  Just in case though I am still drinking 3-4 liters a day.

Tuesday evening brought a visit from my UWL girls who have been absolutely amazing. They are two exceptionally beautiful people. Their kindness and compassion for people is what makes them so good at what they do! Sometimes even when we’ve only known people a few months they impact who we are as people. These two girls have done that. I am a better person from knowing them and they have taught me so much! Girls, I still play the grateful game (typically by myself) almost every day! These two lovely ladies got me the most beautiful gift as well!  An engraved jewelry box with a gorgeous bracelet engraved “left foot”, and “right foot” on either side. They uplifted me on one of my toughest days yet.

In the midst of all the silly puttiness I received a phone call to come to the hospital in 2 days to get a port put in as there was a cancellation. I said I would be there but wanted to make sure the doctor knew that I was going to be at peak immuno-compromisation. So off I went for my port insertion on Thursday. I was so glad that Jessie had taken pictures on Monday and we hadn’t cancelled as it we wouldn’t have been able to do the pictures between this and the loss of my hair. I was pretty anxious as this is one of the things I have struggled with the most however a port (inserted under the skin) is way better than a Picc line which dangles out of your arm. When I got to the vascular lab I was greeted by the sight of the one person I had been secretly wishing would be there. This is a lady who I worked with at the Cath Lab and her skill, professionalism and combination of kindness and frankness put her in a very high place in my esteem! So seeing her was an amazing gift and was instantly re-assuring. I also found out that I had the opportunity to take part in a study. This makes me excited as I am a huge nerd and so far have not been able to “give back to science” by being part of research. So into the lab I went. It was quite neat as it is set up very similar to the cath lab so being on the other side was an odd experience. However I saw lot’s of familiar and friendly faces. Then I opened my big mouth! When signing consent I pursued the issue of my immune system. I just wanted to make sure I got anti-biotics or something or that they cleaned me up twice or whatever needed to be done. The doctor called my oncologist and they decided that they should wait till I am better situated before the port goes in and that they would just put a Picc line in. GAH!!!!  I was so frustrated. I wasted a spot for someone to get a port put in, I didn’t get a port put in and now I have tubes dangling out of my arm. GRRR! Anyways I am sorry to all who were inconvenienced by this! So my dreams of riding in the next few weeks are shattered unfortunately.  This makes Mondays ride even more magical so thank you ladies!

Lots of people ask questions about the picc line I will try to answer a few. 1) Were you sedated? No I was not sedated or under anaesthetic for getting the picc line in. It is quite easy and mostly pain free. Unfortunately when they put the freezing in the arm they hit a nerve and I had shooting tingling ice pain travel into my fore-arm and fingers and then intermittent pain in my forearm. But I’m fairly confident that was just because they were working really close to a nerve and it was just a stroke of bad luck on my part and of course I was too silly to ask for more freezing when he stitched it in so I felt most of that. When he noticed my “Silent scream” he added more freezing. 2) Does it hurt? No, not really. It’s about the same discomfort level as getting a set of stitches. So I had some limited range of motion but it is already back to 97% mobility and is itchy. 3) what is it for? It is a tube that runs from my arm to my heart to make administering chemo easier. Please feel free to ask any other questions and I will try to answer them.  

So Thursday I had a Picc line put in. Friday I had an echocardiogram scheduled at 11:15 to get some baseline images of my heart. Three of the drugs I’m taking affect the function of my heart so they will be monitoring this closely. Friday morning at 7:36 am my phone rings and it’s the hospital. They would like me to be at admitting by 8:15 if possible. So I scrambled out of bed and Steve drove me to the hospital while I called my parents to let them know my appointment had been changed. The echocardiogram went well, it’s like getting an ultrasound so it was a pretty relaxing morning. I then had coffee with a friend who works at RUH and then went home to put on my game face because at 11:30 I had an appointment to shave my head.

thanks for the great shirt Kate!

All in all It’s been a roller coaster of a week and although nothing went quite according the schedule or as planned all the pieces fell together and it seems that everything happened just the way it needed to.

Saturday ended off the week in a really exceptional way. My barn family gifted me with an exquisite Tiffany’s necklace. Yes, the real deal, diamonds and white gold in a horse shoe!!! I was told some of the horses tried to donate their shoes but they decided they wouldn’t hang as nicely on my neck J  They videotaped my reaction, it was priceless... and more amazingly, I was speechless. Along with this beautiful gift the entire Moonglow team wrote me journal notes in a beautiful journal! When I took the book home and read them I cried. I was so moved by so many! I am incredibly grateful to have my first cancer tears be tears of joy and gratitude! And that is the greatest gift that my Moonglow family

has given me. I am so blessed to have those hoofprints on my heart.

There is something about the outside of a horse that is good for the inside of a man
Winston Churchill
 candid moment with Flair captured by Jessie

I need to sign off now as in case you didn’t think Steve was amazing enough, check out the breakfast he just made me!

Left Foot’n & Right Foot’n,

Steve & Alyssa