Monday, 23 March 2015

Living Gifts

Over the past couple of month especially, you have been exceptionally generous with meals, cards & messages, visits, gifts, prayers and much, much more. We have been blessed not because of the objects we've received but because of your hearts of generosity, love, and encouragement. It's because of your character demonstrated in our lives.

It doesn't matter who you are... friend, family, stranger, co-worker, neighbour, church family, married to me... I'm thankful to God for you. 

Please know that if I haven't seen you when you've come or I've cancelled, it's me.

Thank you for being who you are and for being a blessing to me. You've given my heart life.

Some living gifts... lobsters!

Thursday, 19 March 2015

Days Lost

Around the time of my seizures I've recently learned that I lost days of my memories. I was "awake" for parts of them and making sense. I posted a blog entry and was interactive with others. Some moments I can recall -- like saying "don't call 911" but there are also times like travelling back from Florida that I remember nothing (sorry Jim... you're forgettable).

My brain just isn't what it once was.

At first I thought it was just minutes or hours, and then after asking questions I realized it was days. It's scary realizing that you've been active but have no recollection of anything.

Just another day in my life.

Spending more time in bed

Friday, 13 March 2015

Bad Days & A Better One

I feel like I'm a remnant of what I once was. I've been torn and reduced to lesser portions of me. I'm weak, needing to rely on others for the basics of life and being unstable medically. Emotionally I'm fragile and lacking motivation to do anything and everything except for eating a lot and still not gaining weight. I've learned there are hours and possibly days I have little to no memory of around my seizures. It's disturbing.

Having said that my family thinks I'm stronger this week than last. I have been trying to find my motivation, purpose and feist (which if you know me is not something I'm usually needing to find). I'm trying to regulate my pain medication and accept the advice I usually gave to others (it's ok/better to take pain meds when needed; don't just tough it out and think you'll be better for it).


I'm reliving life as a child and learning something new. With family, I'll be baking a friend's wedding cake and learning how to make fondant and gum paste flowers and decorations -- something I've never done before and should be able to do safely from home.

And then there's being read to. I could write a whole entry on this (and still might). As kids my dad would read stories to us going to bed. I was a very good sleeper and would fall asleep by the second paragraph. Dad asked if he could read his favourite  story to me again -- Narnia: the Lion, the Witch & the Wardrobe. So together we are each day. Me, lying in my hospital bed in our home's office and him slightly reclining, in the office chair beside my bed. This time I fight to stay awake.

It has been a good day today.

This is my arm today. I've got purple spotted leopard print bruising on my arms, thighs, ankles & feet. Gotta love the effects of medications -- which ones (chemo, my steroids, etc.) I do not know but apparently it's normal!

Although not this book, I finally got through "Are You My Mother?" successfully. It's interesting how the stories take on different meanings depending on what's going on in your life.

Saturday, 7 March 2015

Priorities

I thought I had a week with only one appointment. That hasn't happened. I just want to breathe. I'm not suffocating, just treading water. But I'm thankful. I couldn't be doing this without help: the meals every evening, rides to appointments, babysitting, and just listening and praying for us.

I could continue on and on about people and how precious they are to me these days. My sister's graduating class got the news of a tragically unexpected death of a classmate this week. She leaves behind a husband and three small children.

None of us know what today will bring. As I've been given time to prepare for my death, I want to try to use it wisely. Although I'll need time with God, my family and to rest, I'll also want to spend time with you. Please be patient with me as I figure these priorities out.

Every moment of life and time are precious. Grow & invest as much as possible.

Reading in my hospital bed at home

Thursday, 19 February 2015

Looking at Life in a New Way

Xhevat and I got some difficult news this week. I am now being taken care of by the palliative care team. There is no longer anything that can be done by radiation to help in my care. And we need to make decisions as to whether continuing with chemo will be beneficial or just more side effects.

I should have seen this coming but I didn't see it this quickly. Physically I've declined. I take longer to do things and require assistance. I have a walker, raised toilet seat, shower chair, and wheel chair. A hospital bed will be coming shortly. I miss my ability to go to the bathroom by myself. My dad's "solution" was that I should wear adult diapers when I was travelling. I'm not there.

I have no clue what the future will bring. I do not know if God will choose healing here on earth or death. I do not know when... but I do look forward to heaven.

Looking at life in a new way

Sunday, 15 February 2015

Valentine's Day

Two years ago, I met my oncologist and got really bad news. Last year I hosted a party celebrating life and love. I wanted to celebrate the people in my life who have made an impact. This year I've got some family with me and I'm keeping the party quiet.

A trip to Florida last week to the "Happiest Place in the World" turned into a very different experience which was cut short. I had a seizure. Our best action was to get back to BC. Three of the ten of us returned and drove straight to the hospital from the airport where I was admitted. I spent a night in Emerg (had an MRI) and another night on the oncology unit. Just as we were to be discharged (and literally being transferred to the wheelchair), I had a second seizure... so back to bed for me.

After a few hours of recovery, we decided it was time to go home. And that's where we are now.

We are all very tired. If little things could have gone wrong, they did. We are all relatively unscathed but weary and emotional. It seems that stressful situations (people, noise, making big decisions, etc.) overwhelm me so I'm asking that communications be kept to email or Facebook. No visitors at this time please.

Since I didn't go on rides at Disney World, I created my personal roller in ER!

Thursday, 12 February 2015

Grounded at YVR & very thankful

Tuesday, Xhevat witnessed what we believe was me having a seizure. It wasn't long or violent and he was able to do all that we'd talked about doing if it ever happened. Within moments I was conscious and speaking coherently and orientated x3.

And so the nurse in me questioned him. Length of seizure, arm/eye/head positioning, meds given, noises I made, if I slept afterward & for how long, etc. This was incredibly scary for each of us.

We're also aware of travel insurance (or my lack thereof it) and what health challenges that might bring. So for three of us, our trip is over and we're home. We'll hopefully get to see my doctor soon.

The earliest flights we could get home was for yesterday.  My sister, husband and I travelled back then.  The remaining will return later. Oh what an adventure this trip has been!

I called my oncologist immediately upon return and he suggested I go to Emerg, so I'm lying here in Emerg, just had an MRI and am being monitored.  I haven't had any new symptoms.

Please pray specifically for the safe return of my family, that my cancer has not progressed, and pray against fear of the unknown.

Updated Feb. 12, 2015
What I Have Survived Since Feb 12, 2013
(in 260 Appointments)

IVs (successful) x 88
Bloodwork (successful) x 87
IVs or Bloodwork (unsuccessful) x 20
Biopsies x 13 (I think)

Chemo x 18 cycles including:
IV Chemo x 29 doses
Oral Chemo x 792 pills

Bone strengthening infusion x 25
Injections x 12
Brain radiation x 15
Other radiation x 3
Tattoos x 6

MRI x 6
CT x 17
Ultrasound x 3
Xray x 9
ECHO x 1
Surgery x 2
Minor surgery x 1

Days in hospital x 9
ER visits x 3

Parking Ticket x one given incorrectly & almost another one

Coming Hoe
C