Friday 28 November 2014

Bird Poop

I can't help but be thankful for my family today.

Last week my dad drove over the mountains just to pick me up so that I could spend the week in Kelowna. That's a lot of driving just to give me some new scenery.

My mom took care of Matias, hosted dance parties with my boy and youngest niece while homeschooling her and cooked up some delicious food for all of us. Oh and did I mention that my mom and dad spent this week with us so that I didn't need to worry about finding babysitters or rides for appointments?

My sister gave up hours of her sleep and a bunch of energy to ensure that my boy was sleeping safely and wouldn't wake up his mama. She also started to teach him about eating rainbows (one bite with various colours of food) which only added to my list of parental "lies" such as Cheerios are "cookies." She must also be a good cook as my boy ate more than was normal for him!

My niece gave up her bedroom for me and it was wonderful to sleep in a big bed by myself. I slept better than usual. She also entertained Matias often.

My nephew would play peekaboo with Matias and would even let him in the office while playing on the computer. The two of them played hide and seek (or rather chase each other around the house).

My other niece gave up her bedroom so that Matias could have his own space to scream, cry & talk at night (while being supervised by my sister). She read him books, chased him around the house, snuggled him (for as long as he allowed it) and also loved on my boy with dance parties.

My brother-in-law scared and loved on my boy with persistence and fun. He took up the challenge of getting my boy to eat vegetables (two peas)... giving him the option of putting the peas up his nose or in his mouth. And he would chase my boy around the house and then throw him up in the air and we'd all hear a nervous giggle and see a great grin on the little one's face (the big guy also was enjoying the sillyness of it all).

And my husband got to do some things he usually doesn't get to do... sleep through the night, watch a movie with a friend and get snuggled by JR (our rather large and not very affectionate dog). Plus, he received an award at work -- Employee of the Month!

Another highlight of the week was that within 24 hours, four of us got haircuts (and I'm one of them!). AND this week I had to buy new bottles of shampoo and conditioner (my last bottle of shampoo/conditioner were given to me in August of 2013!)!

In my medical news, I saw my oncologist this morning. Once again, my neutrophils (immunity) are too low to receive chemo this week. We'll try again next week to see how they are. As well my tumour markers are on the rise... just enough so as no need to panic or change plans right now... but enough to wonder if this chemo is no longer being effective at killing my cancer and I might need to change to a new chemo. I'll get my fourteenth CT in December and we'll see what my cancer is doing in my chest and abdomen.

The news is not horrible but also not great. It's sort of like the bird that pooped on my dad's windshield as we drove home from the Cancer Agency. Four plops of poop to be precise. It's not the end of the world; it just sort of messy to deal with. And for right now, I'm trying to see past the poop and see the beauty of the view beyond the windshield (which coming home from the Cancer Agency meant mountains, harvested fields resting for the winter and a blue sky peaking out from behind the white fluffy clouds).

Yesterday was American Thanksgiving and today is Albanian Flag Day (a BIG holiday for Xhevat, his family and all my Albanian friends)... so tonight we're gonna enjoy life and celebrate with a homemade best-attempt-at-Albanian-food meal! Urime 28. NĂ«ntorin!

Learning to look beyond & enjoy the view.

Some of my favourite Albanian food

My favourite Albanian

And my favourite little boy

Monday 24 November 2014

Enough for Today

Last week was a full week and this week will be a different kind of full.

I was in Kelowna at my sister's place this past week. My dad came down last weekend to pick Matias & me up. My sister's family and parents took care of Matias. Xhevat (at home) and I (in Kelowna) got to rest and sleep at night. Well, I tried anyway.

I've had a tough start to my week today. I met a new doc (a radiation oncologist who specializes in brains) and we were talking about some stereotactic brain radiation for me. Unfortunately although some of my "floaters" have improved, there are still some there... so I'm not a candidate. His words were encouraging in that he said what I looked like on paper was not how I looked in person... but he also said that there were some spots of concern and, of course, the "floaters."

I don't receive "no's" very well. When I'm feeling this good, it's hard to hear someone say something isn't an option at this time.

So I have to choose to tell my heart and mind that it will be ok. God has not changed. It's ok to grieve. And right now I'm doing well. 

I sometimes ask when enough is enough. But I know that through all of this God will give me all that I need to get through today.

So I'm asking for complete healing of my floaters, brain spots (he said there were two areas of concern), the cancer in my bones and the cancer in my liver. That's not too much to ask, right? And if He chooses to not heal me, then I'm claiming his promise to help me with all that I need to get through each day.

That's all my heart can share right now.

Perplexus: The brain is still working despite the presence of some cancer cells.

What I Have Survived Since Feb 12, 2013
(in 214 Appointments)

IVs (successful) x 76
Bloodwork (successful) x 80
IVs or Bloodwork (unsuccessful) x 15
Biopsies x 13 (I think)

Chemo x 17 cycles including:
IV Chemo x 29 doses
Oral Chemo x 644 pills

Bone strengthening infusions x 22
Injections x 9
Brain radiation x 5
Other radiation x 3
Tattoos x 6

MRI x 3
CT x 14
Ultrasound x 3
Xray x 7
ECHO x 1
Surgery x 2
Minor surgery x 1

Days in hospital x 9

Parking Ticket x one given incorrectly & almost another one

Tuesday 18 November 2014

Live, Love & Serve Fully

Today I'm tired... but I should be tired. I have an active boy who I'm caring for on my own while Xhevat is at work. I'm cooking and cleaning. I did 5 loads of laundry in one day last week. I've had guests over & gone out to a friend's house (12 of us... six adults, six kids under 6 I believe). I've finished six cycles of my third round of chemo. I've had lots of doctors' appointments and a massage (she said I'd be sore and she was right). I've tried to safeguard my boy's room but he seems to be one step ahead of me some days. These are busy days.

There are a lot of "I's" in the previous paragraph and I couldn't be doing all this without support. So this week I'm also learning to rest and do some things for fun for me. I'm learning to read books to Matias and snuggle with him when he's in the mood. I'm learning what's more important and what can wait.

My dad drove in from Kelowna on Sunday so that after my MRI yesterday, he could drive Matias & me to Kelowna for a "vacation." My family is taking care of Matias, I'm getting time with family or to just rest & Xhevat is getting the opportunity to sleep through the night (he's usually the one getting up with Matias multiple times at night). I am blessed beyond my understanding with the people in my life.

A friend shared a quote from another friend who was quoting someone else (welcome to the complex world we live in):
"When I first found out I had cancer, I didn’t know what to pray for. I didn’t know if I should pray for healing or life or death…. As it evolved, my prayer has become, ‘Lord, let me live until I die.’ By that I mean I want to live, love, and serve fully until death comes. If that prayer is answered, how long really doesn’t matter.” -Thea Bowman

This is how I want to spend my time.


A quiet moment where at least his head was on the mattress. 


Sunday 9 November 2014

Parent Fails

My boy may not eat or sleep well... but I think he has a little more energy than normal! It was bedtime & up the stairs he climbed and ran first into the spare room and then to his parents room. Eventually he ventured into his room. I was sitting next to the closet deciding whether I was going to refold clothes that he had removed from his drawers and close yet again. Parent fail #1.


His diaper was changed. He got into his pjs. His teeth were brushed. And we'd read a story. He seemed to be quieting down and so I silently exited his room.

I was really pleased that he didn't cry or throw himself at the door. It was just so peaceful. The thought that he might have a good sleep even crossed my mind. Parent fail #2.

I had just sat down on our bed's edge when I heard an unfamiliar noise... like an electrical cord scraping the wall. For safety I went to check on him. I opened the door and...

"Xhevat, come here right away."

There was my boy... very happily sitting in the middle drawer of his three drawer dresser and throwing all of the clothes out of the drawer (parent fail #3). I wish I'd taken a picture. I'm guessing he opened the first drawer and used it to climb up to the second drawer! Fortunately our boy is light and his dresser was attached to the wall... but knew we had to at least temporarily fix the dresser situation immediately.

Tape was our solution... no, we didn't tape up our kid. We taped up the dresser!


Dad and I were quite proud of our taping. And that only lasted about 15 seconds as Matias proudly started peeling it off (parent fail #3).


And since Home Depot wasn't open Xhevat and I put on yet more layers of tape in a different pattern (shoulda use duct tape) and two white vertical child  locks because one my wasn't quite long enough. (Potenal parent fail #4)


Only time will tell if we have succeded or if we'll be sharing parent fail #5 with you tomorrow. 

Sleep well my little boy. Sleep well so your parents can sleep as well.

Saturday 8 November 2014

Walking Away

Just over six months ago I walked into the Red Cross on my dad's arm. I had a physiotherapist's requisition for a walker, shower chair and one other thing that I can't remember (either raised toilet seat or wheelchair). Awkwardly I admitted that the equipment was for me (and not my dad). I only accepted the walker as my pride couldn't stand the thought of needing the other two pieces of equipment at that time. My dad, overcome with emotion, stepped out while I was finishing up the paperwork (After all, it's not very often that you drive your 35 year old daughter to get a walker). 

When I was finished and since he'd managed to park in the farthest parking space, my dad tried to help me by pushing the walker out to the vehicle. I had to sadly remind him that the reason why we got it was to help me walk.

From there we went to Costco and all of a sudden my cancer (which had been really easy to "hide" in the past) became very visible. I received curious, pitying looks from older people. Younger kids stared. I was almost hit by a number of carts and always seemed to be in the way. People would tail me and then whiz by me as they were in a rush. Although I didn't look sick, my walker and my lack of speed walking drew much attention (well, it felt that way anyway) especially when I didn't seem to walk fast enough for drivers at crosswalks.

For the next while we struggled to fit a walker and stroller into our vehicle (it even travelled with us on our trip to Europe). If it was only a shorter distance I'd just hold onto my husband's arm. I felt much less conspicuous with the stroller and so I'd try to push our boy in his stroller.

Today we went back to the Red Cross. My sparkly cobalt blue walker went back to its home to help others. I may need it again someday far in the future... but for today, I'm ok and I'm walking away. 

My boy & my walker (when I was in hospital in April)

Saturday 1 November 2014

Off the Spectrum

Yesterday was a better day. I had a good appointment with my oncologist. As far as I'm aware, he was completely up to date on what my radiation oncologist had said to me the afternoon before... but he's a smart man. He asked some questions and let me "share my news" with him. All the while he was assessing how I was taking the news and if I was clear what the news meant in terms of treatment. I am so thankful that I have a team of people who lovingly care for me.

My medical team celebrates the good news and genuinely hurts when they share hard news. I am blessed to have them in my life. This particular doctor has seen me at my lowest and reminded me again yesterday how far off the spectrum I am (in a really good way).

So last night we celebrated two friends in our lives (and one of their birthdays) who have been beside us for many years. It was a wonderful distraction and reminder of the important things and people in life. And how important it is to live life fully each day.

And then today (in my uniquely odd way), I took a look through my CT images.  I went back to my images on Feb 2013 and looked at pictures of my very spotted liver and my innumerable lesions. And then I looked at August 2014's images (I'll have to wait until Wednesday to see last week's images). My liver looks remarkably different. It feels like it's been an incredibly long journey, but I've come a long way.

Today my encouragement came from looking at my CTs. It may sound like an odd way to be encouraged, but remember... it's me we're talking about and I'm off the spectrum in terms of normal.

My enlarged liver spotted with innumerable cancerous lesions. Feb 2013 (the big, massive triangular object is my liver; the whiter object towards top right is my heart).

My much less spotted, smaller & happier liver. August 2014.