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.

Thursday, 30 October 2014

Disappointed

I got my CT results today. They weren't bad and they weren't great. I had hoped for great. I still only have one lesion on my brain but it has grown a bit... so it's not stable.

I've been offered to have more imaging and a referral to see if I'm a candidate for another type of radiation (which would also have its potential benefits and risks).

As my cancer is not stable (there's still some growing in my brain), I still can't drive. My doctor is so considerate and felt badly for having to say no. It is good to have compassionate people on my team.

I'm disappointed but I have to remember the big picture. Half of the people who have my diagnosis have already died. I still have a really good quality of life. The growth of my brain lesion was minimal. I'm doing well & my hope hasn't changed. 

I've actually had a pretty decent week. With God's help, I haven't spiralled downward in anticipation of getting these results. It's not the news that I wanted to receive but it's also not horrible. I'm thankful that there aren't more spots of cancer on my brain... but was really hoping and praying for less.

Wednesday, 22 October 2014

Taking Off the Stickers

I've known that fear would be sticking to my heart both this week and next week and I've been praying that it wouldn't take over my heart.

After our birthday & the six month mark, I've gone into a busy two weeks. Seven appointments that will culminate with a possible change to my driving status and/or another round of chemo. I'd love both.

On Monday when my throat first started hurting, I was concerned but knew there wasn't much I could do other than drinking fluids and getting some rest. Tuesday I was exhausted. I somehow managed to need five naps throughout the day (one is normal; five is crazy) and still slept 8+ hours at night. Fortunately Matias was having a relatively calm day yesterday and we both managed.

However when Xhevat got home from work, I was done. My headache got significantly worse, I had no appetite and I eventually threw up. Vomiting scared me more than anything. The last time I puked was when I was diagnosed with brain mets. Had my brain met(s) increased in size or number? Had I simply stretched or compressed some parts of my neck the day before? Or maybe it was just my cold symptoms? Was this the beginning of the end? Should I go to Emerg and see if there was something to do? Should I try and wait it out?

I just sat on the couch with tears streaming down my face.

I decided to speak with the oncologist on call (Yes, us cancer patients have a wonderful number we can call 24 hours of the day and we can talk with an oncologist who can answer questions. Thank you doctors, nurses, et al who work at all hours of the day).

The doctor and I talked through things and decided to wait a bit to see how things would continue. In the meantime he suggested some medication.

Because I wasn't sure how I'd be doing, I asked Xhevat if he'd stay with me today. I needed him for his emotional strength and support (Did I mention how thankful I am for him?).

Fortunately no symptoms got worse overnight and we continued on with the plan of getting spinal radiation today... so I should be feeling more back pain and discomfort and possibly have esophageal pain over the next few weeks... yeah! Oh the things we do to try and live comfortably longer!

And do you know what was the worst part of today?!?!! Taking those silly stickers off! All seven of them! And just to make it even worse, Xhevat peeled off the last one super slowly and made me say "I love you" so that he'd just pull it off quicker. I gladly (and quickly I might add) gave in and told him what he wanted to hear (Did I mention how thankful I am for him?).

I know that I'm struggling with fear right now. When triggers (like new symptoms or the unknown results of future scans) appear, I have to keep on reminding myself of the truth. My hope hasn't changed, nor has my God. The removal of stickers or fears are going to hurt... no matter how quickly or slowly they're removed. It's a process because there are always going to more stickers added. Whether they're removed quickly or slowly, there will eventually be an end to the pain and I will get rid of all of my stickers. Until then... with the help of others, I'll keep on getting rid of my stickers.

The sticker marks after they were oh so lovingly removed (the marks have nothing to do with radiation).

Monday, 20 October 2014

The Mark of the Cross

Today starts a busy two weeks for me. It started earlier today with a radiation planning session. By the end of next week I'll have had seven appointments ranging from radiation to a CT to bloodwork. My mind is already racing.

In my case, the radiation planning session is basically getting the best picture of the area where the cancer is causing pain/damage. With a few marks and more detailed picture, they can focus the zap of radiation in the right place. I had Xhevat mark a couple spots on my back that were more painful and then at today's appointment I got a few more marks. Fortunately, these marks were only made by markers and not tattoos. The clear, circular stickers are there to ensure the marks won't fade when I shower. I was told that I can't lose the center mark of the cross... how true, how true.

This is going to be a marathon of appointments for me and I'm starting it off with a sore throat & runny nose. Can you pray specifically for energy, endurance and an immune system to fight my cold and still get chemo next week? And that I'll never lose the mark of the cross.

A professional did this... not my toddler.