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

Wednesday, 11 February 2015

Back in Emerg

Krista, Xhevat and I (Nicole) flew back to Canada today (earlier than planned).  We came straight to the ER and are still here.  Please pray for Krista as she struggles with new and scary symptoms.

Monday, 9 February 2015

Purely Painful Delight

At Animal Kingdom we watched two shows and I experienced two poignant moments.

The first show was the Lion King. Matias was totally enamoured. He danced, clapped, laughed and squealed his way through the show. Other than wiggling to the music, he never tried to get off his uncle's lap (being still is a rare event for our boy). I sang at the top of my lungs through all the songs I remembered, reminisced with the sensations of flame throwers, and was caught off guard by the song "The Circle of Life." Tears, smiles, sorrows & joy.

Then came more sitting in a wheelchair feeling sorry for myself as everyone else ran around going on rides.

Another last minute decision was to made to watch a second show. Finding Nemo. And another character parent who'd died. This time, I watched the father/son relationship and cried. And this time I also asked to hold my son through the show as he'd done so well the first time. He sat completely still on my lap for 45 min! I'm pretty sure its been almost a year since that's happened. I just snuggled him in and kissed his head as often as I could... and cried and laughed.

My legs don't have much meat or fat on them and it hurt to have him sit on me... but no amount of pain could have stopped me in that moment. Purely painful delight.

The boy's dinosaur eating his uncle's nose.

The light & heat of the flame throwers

Snuggling the boy during the show.

Friday, 6 February 2015

The BOO Awards!

The last 24hrs have either been a series of comedic errors and/or us needing to learn to push through challenges.

I'd like to present the following Boo Awards brought to you by the Princess Bride. If our challenges weren't enough while we were travelling, they were topped off by:

- To the airlines for an inability to even check us in advance (unless we paid extra -- we'd already spent more than 4 hours on the phone with them the days prior walking through online confirmation, connections, disabilities, seating - we'd to prefer to refer to this as supportive parenting and not helicopter parenting
- To the ice on the plane that you caused the missed us to miss our flight (there was ice on the first plane of the day. It was de-iced, everything backed up & then literally we watched them lock the gate on our final flight as it pulled away from the gate): did you missread our boarding passes and not know we were not at our destination?
- the porters who didn't understand what a broken spine means when going over bumps in wheelchairs
- multiple mobility devices repeatedly lost or misplaced or not where they should be as promised
- seatbelt airbags fitting through the car seat places for seatbelts
- new hotel arrangements to be booked and food not available while travelling as things generally are not open at airports after 9pm or before 4am... oh did I mention that you're also in an unknown city
- it was colder in TX than at home (below freezing... and we're Canadians!)
- when the question you're asked after travelling the entire day was "would you like your wake up call at 3:30am?"
- a big fat zero number of pretzels, cookies, chocolates, milk, stickers, or notice given to my well behaved boy during flights by staff (their job is not to praise me or my boy but there's a way of saying we don't serve milk to children over two that is not ok with this mama)

On the other hand, there were some pretty stellar moments in my day as well.

The Wesley Award for the day went to Enoch, our driver, who tried to get us to our gate in time (a few minutes and a few passengers who got honked at as they didn't move) with a man who by all means genuinely cares and is hurting today.

Honourable mentions go to a friend from church (who listened to my heart on the first leg of our journey) & the shuttle bus driver (who brought his van to the hotel and a rolling office chair to his bus so that I could get from the hotel to the airport and back more easily).

Always faithful is my husband who scooped me up in his arms and carried me when I couldn't get into the shuttle bus. That's right ladies... my husband put his arms literally behind behind my neck and knees and I am swept off my feet. He supports my decisions even if he doesn't fully agree and cares for our son in a way that I cannot. He also balances the moments by helping me get off the floor or toilet. We're keeping it real.

Our boy was actually commented on  by another traveller by saying how he well behaved during the longer flight. Way to go son! Keeping making good choices!

And to my parents who are crazier than me but solid enough to support a trotting toddler, carry-ons, carseat, walker for their daughter, etc. on long, unpredictable journeys. Their faith and stamina have and still led me.

And to the Tim Horton's sandwich that fed my steroid munchies? 'Nuff said.

We have arrived & are happy to be here together.

A boo award for you

And some fresh hand-picked Florida strawberries for the others

My walker, his car seat and our son -- all mobility devices!

Thursday, 5 February 2015


We as a family have been experiencing some harder times lately -- physically, emotionally, and spiritually. Each member of our family has been processing the effects of my cancer in a different way at different times. We're also processing this from different cultures, personalities, and needs. And we are very thankful to have each other.

It is normal to process things differently.

Visually seeing my physical and emotional weakness is difficult for both me and my family. I usually don't lack motivation or feist and that is especially difficult for me.

We are wondering if we are also experiencing spiritual attacks.

On another note, we are hoping to go on a family vacation. It is not an ideal time but we're combining a few things and this is it. So we are trying to work out the complexities, fears, joys, details, etc. of the "Happiest Place in the World."

Would you pray for us?
- Stability or improvement in my health
- Safety and no "episodes" while travelling
- Clear, open, honest communication amongst family
- the details would work themselves out with as little stress as possible
- healed relationships
- rest & peace

We are so incredibly blessed to have each other.

Trying out a new place to rest & pla (not mommy approved).