A good week and uncertainty

This week has been a good week overall.  I had a wonderful birthday Sunday with a beautiful and delicious cake as you can see - Jack and Davis were away with their dad so it was Talyn, Tasha, Andrew and Mom and Dad.  The next night mom, dad and I dined at the Keg near their place so that was also great.

Tuesday I had my 5th radiosurgery appointment and also had an appointment with Dr. Voroney.  I had expected to get another schedule of treatments and perhaps find out which of the 5 tumours (there were still remnants of the 2 larger ones that were surgical cut our a few weeks ago) had been treated.  My hope was that he wasn't going so say the one near my brain stem was to difficult to treat or something similar.

I found out instead that every treatment had been hitting multiple tumours and that my treatment Wednesday was my last for now!

So next steps are that I will see Dr Kelly my surgeon in just over a week and then get an MRI late August and see Dr. Voroney shortly after to review and assess next steps.  There is certainly the possibility that I will need to do more treatment or surgery depending on what the scan shows.  And the risk of seizures or other neurological incidents remains.  I can't drive for at least 3 months, and if I have a seizure that changes as well.  


The coming weeks will likely be a bit harder physically than the last week has been - the benefit and the effect of radiosurgery is delayed, so headaches, nausea, and continued tiredness and balance issues are very likely.  Mentally, it will be managing the uncertainty of how effective the surgery and treatments have been and what the 3 month scan will look like.  I also may require some medication for headaches which may affect my brain.  Still many unknowns.

After my treatment yesterday you can see me ringing the "last treatment" bell.  I had rung one similarly after my last herceptin treatment for breast cancer in 2015.  They didn't have such bells while I was doing treatment for leukemia.  I rang it pretty loudly.

I continue to be overwhelmed by everyone's wishes, thoughts, prayers and energy.  It has helped me tremendously while in hospital for the surgery and during the radiosurgery treatments.  I will continue to lean into your bubble of energy as I navigate the next few months.  

Cheers and love,

Tricia

Radiosurgery 101 and Happy May Long

I thought I'd do a post - just had a nap so should have enough energy for a short post.

Between Wednesday and yesterday, mom and I were up to the Tom Baker 3 times in the basement (radiation).   I had four treatments.  Prep was done last week.  Some of you were asking about what the treatment feels like, so I thought I'd share what I can tell you.  What it feels like during the treatment is easier to describe than what how the treatment actually works, and it is again different than how I feel post-treatment.  How it works would require a physicist, radio oncologist and a few very smart technicians.  And none of us would understand it ;)

When they call my name, they lead me into a room where I lay down on a thin mental board.  At the end of a board is a base that was formed for my head last week.  I get my head positioned into the base, and then they put a warm blanket on me.  Then comes my mask, also made last week.  It's made of something that reminds me of silly string from back in the 90s.  But is is hard - not soft.  They tell me we're about to start and then clamp the mask on my face.  It's pretty tight, but luckily I've never been a tiny bit claustrophobic.  Then all the technicians and physicists leave.

I also have an orange ring on my stomach - like you'd play fetch with a dog with - to hold do my hands don't slide.  The machine will shut off if you move too much, so for the next half hour I start my strategies to keep calm and forget I'm getting treatment.  It involves breathing, visualizing - often I swim with turtles and boogeybord in Maui.  There's also the music - I've asked for Jazz - I used to play Jazz piano some will know.  And I know that there will be roughly 7-10 sounds in the half hour so it's another way to measure where I'm at.  I've actually thought a lot about my summer years ago pre-cancer at Jazz Camp in Saskatchewan where as someone who never played Jazz got placed with this group of talented guys who already played in a band together.  It's crazy how your mind helps you when you need it.  So between the music and the breathing and the visualization, I get through the 1/2 hour.  I keep my eyes closed, but I can also feel that my little metal board moves, sometimes it rocks a bit back and forth, I hear some dinging sometimes and on the first day the people were also calling out various numbers - the physics part I think - during some of it.  And then with my eyes closed I also see green and orange light pass by, and hear various different fans or something.  They did tell mom that next week she can watch if she likes.  If she can handle looking at me with the mask clamped on my face I'd love to know if my little board is moving or not.

Once they remove the mask, I pull myself up, find mom in the waiting room an head home. On the first day I had to do 2 and after the first they asked if I wanted a break and I didn't really so we did they second immediately.  The machine has never stopped and after the first day they said I was a rockstar ;)

So that's what it feel like during treatment.  I've got 2 more next week Tuesday and Wednesday and I also see Dr. Voroni, the radio oncologist who I saw last week before we did the mask, on Tuesday before treatment.  I don't know if I have to more beyond Wednesday or not.  I'm letting the experts deal with it.

Post treatment I feel tired.  Very tired.  Kind of heavy.  I also threw up yesterday afterward but luckily mom got me the bucket in time :) So I mainly eat, sleep, drink lots of water and repeat. I've been sleeping mostly at my condo as it's so close to TBCC but sometimes mom and I head to mom and dads for a change of scenery.

Energy running out, so will sign off.  Maybe too much detail but I'm a visual person so now you can imagine me as much as you want while you send all your incredible energy.  Thanks again - it's helped me get through the first 4 and I'm not at all concerned about doing more of it.  Gotta get it done.

Enjoy the May long weekend everyone!  Love Tricia

A quick pic

Just a quick hello to everyone as I will start radiosurgery treatment tomorrow and am really not sure what to expect or when I'll be able to post next. Since my last post I've gained strength and feel as ready as I can for the next stage. My incisions from surgery are healed so I popped in my hair, a little makeup and did a rare selfie. Steroid puffy face and all. Shared below for my amazing supporters. Thanks again to everyone for all the messages, food, love and support. If you can send some extra energy tomorrow that would be awesome.

Cheers

Tricia

Risks and radiosurgery

Another crazy week for more reasons than I will explain. Health highlights include getting my staples and stitches removed, radiosurgery consult w Dr Voroni at TBCC, yet another incredible addition to my specialist team, getting a CT scan and mask made for treatment yesterday. Too complicated to explain but basically I will be doing a lot of radiosurgery or similar treatment that will hit all 5 spots in some way likely next week! Risks are present of course, including seizures and other new things. But as you know I've been navigating risks for a while. So I'm going to follow the lead of the specialists and all I will continue to ask you to do is send me energy, prayers and your love I am so grateful for. Fatigue is pretty significant right now, so virtual support continues to be the best for me to be honest. And while I do love everyone's picture of me being home and about, most of the day I eat, sleep, drink as much water as I can and repeat ;)

Tricia

Bubble Of Love

It is beyond words that I can say I am home. Discharged from neuro; navigating at a slow but steady pace. Eating, drinking (water) and rediscovering the world which became very dark for a while. Someday I'll explain more. Or perhaps not. For now all I can say is life is incredible. As are all of you, my bubble of love and energy.