Friday, 19 September 2014

Like My First Day

Just after my brain metastases were diagnosed, I lost a lot of strength, feeling, & endurance. The cancer in and around my brain was unpredictable and could do irreversible damage very quickly. Based on how advanced the lesions were in my head and all of the physical side effects that I was having, I think my doctor thought things would go downhill quickly. He said average life expectancy was six months.

I was both shocked and determined. Shocked that things had gotten so bad that quickly. Shocked at the prognosis. Grieving. But yet I was determined to not just allow my diagnosis to wreck my days (determination is my stubbornness put to good use). 

Looking back, we travelled to Kosova when I was at my weakest & most tired. Although I still tire often and can't keep up to Matias as I used to, I'm doing really well. My parents and sister stepped in and have cared for Matias when Xhevat was working. I've had friends and relatives come and visit (physically and through Skype) and did not know if I should be saying "goodbye" or "see you later."

Average life expectancy for me is another month. It's an extremely sobering thought and it seems so surreal based on how I'm feeling. My sister has said that I've been an outlier both in my diagnoses & responses to treatment... and so I hope to be an outlier on the far side of six months.

In fact, I've been feeling so well recently that I encouraged my parents to let me try to take care of my son for the day. They could return home a day earlier than planned. I had plans to see friends. I'd text my husband every hour to let him know things were ok.

The potential unpredictability of my cancer hasn't changed but we have a plan in place, I currently have the strength and it seems like a reasonable plan.

Just saying, I'm really proud of myself. While I was more nervous today than the day I brought my infant son home from the hospital, I did it! I showered, took care of my son, made breakfast and lunch (and dinner is in the crock pot), put in a load of laundry and went on a play date! And then we napped.

I'm still very aware that things could change for the worse rather quickly but I'm ok right now... and so I'm going to live fully today. 

Please keep on praying for us:
- for stable cancer and/or complete healing
- continued strength to get through each day's joys & struggles
- wisdom in knowing if I can care for Matias and when I should get help
- my husband, son and family (my cancer has changed their lives and they need your prayers & support)
- safety for my family as they travel here & home
- living each day with purpose
- gratefulness for being able to care for myself & my boy today

A Benefit of Cancer: my cousin sends fun & yummy gifts from Calgary via my aunt & uncle. I love my family's thoughtfulness! If you need delicious sweets & treats and live in Calgary, let me know cause I know people in the business.

Monday, 15 September 2014

My Day of Rest

It's hard to describe my day yesterday... a whole bunch of new experiences and overall, a great day!

Getting Bigger
We dropped our boy off at Sunday School in the 2s & 3s classroom. It is completely logical that he should be in that room but this was his first time with a lesson, craft, etc. As I haven't had much of an immune system, he hasn't been in any "classes" or such (other than the nursery) that would involve phrases as "criss cross applesauce" or circle time. I'll be learning a whole new language. When I asked how he'd done, I was told he was "full of energy." Yup, that's my boy! He came home with a picture he'd coloured and a list of verses that they'll be focusing on (and that he can memorize). My little boy is growing up! 

Assembly Required
We went off to Ikea in the afternoon & picked up a few things. They say that putting together Ikea furniture can be taxing on a relationship. Although we occasionally disagreed on what the next step was (me with the instruction manual & my husband with his construction intuitiveness), we had a blast! It was great to put together a piece of furniture together... and the final product doesn't look too shabby!

Thee, Thou, Dost

I had the privilege of experiencing Bard on the Beach for the first time last night. A Shakespearean play performed under a big top tent on the beach at sunset. And even better than that, I got to experience it with three friends who were old pros of the Bard on the Beach.

Cymbaline (the name of the play). Seven actors. 30ish characters. An interesting & twisting plot. Amazing acting & quick costume changes. Interaction with the audience. A whole lot of laughter (and caffeine as I was up way past my bedtime). Just a great end to a great day.

Time with God & my church family. Time with family. Time with friends. I couldn't have asked for a better day of rest.

Wednesday, 10 September 2014

Whachoo doon?

was changing my boy's diaper yesterday morning when he looked straight at me and said, "Whachoo doon?" (for those who don't speak my boy's attempt at the English language, he said "What are you doing?"). I couldn't help but let out a little giggle as I was doing what I've done hundreds or possible thousands of times before.

It's really easy to get caught up in the tasks of the day, like changing diapers, and lose sight of why we do what we do each day.

While having lunch with a friend, I had an opportunity to see some of the ways that God is using His story in my life to impact others. When I've had my down days, I've asked Him if He would show me what He's doing. It's been a while since I've asked but yesterday He gave me a glimpse through my friend and a new friend, and it has reminded me of purpose that has come from my cancer.

So today when you're doing your routine tasks that seem monotonous, meaningless or even painful, know that He can use what you're doing to change a heart. And if you can't see what He's doing... ask Him... "Whachoo doon?" You never know, He just might tell you.

Thursday, 4 September 2014

Bottoms Up

It's an odd feeling to want and even crave chemo. Last week my neutrophils were too low to receive chemo. This week they were still on the low side and I wasn't sure whether it would be possible to start my fourth cycle of chemo today.

Getting your results early can be both a blessing and a trial. Last week I got my CT results the day before my appointment. The CT results were mostly very good news (but also added a few questions to my list). I slept fine the night before my appointment and was totally at peace (and even a little excited) going into my doctor's office.

Yesterday evening I got my blood results online. My neutrophils had not come up very much... and my mind started to whirl. What was protocol for this chemo? Could I get chemo with that number of neutrophils? Could I repeat bloodwork today and maybe they'd come up enough? Is there anything I can do to try and get my neuts up this next week? Would my doctor suggest waiting another week or would he take me off chemo completely and that would be the end of this round?

So many questions. And no answers.

And all that you can do at night when the lights go off and you're supposed to be lying still and your brain is jumping from one thought to another is worry. Let's just say that I'm glad to have had a sleeping pill and an app that helps put me to sleep.

I wake up this morning to happy toddler sounds. My mind starts to wander and I try to reel it back in. I thought I'd busy myself by finding some videos to put on a USB for Matias to watch. On that USB I found the video I'd made earlier this summer about my bracelet and all those that are praying and caring for me. After watching that video (almost in tears), I was watching some clips from Veggie Tales (for Matias, of course). The two ones that stuck out to me were "The Thankfulness Song" and "Hope's Song."

I was still anxiously about the call from the Cancer Agency but felt more peace from Him and trust in Him while waiting. A few hours later the phone rang. My neutrophils were low (that was old news to me) and so I'd be receiving chemo at a reduced dose. Fantastic! I get chemo today!  I'll be their most grateful chemo patient!

I've had a really good week... just was surprised by my bloodwork results. I'll share more about my wonderful week a little later.  Today I'm very grateful for my chemo and for my doctor and his knowledge of what is best for me. More importantly than my doctor, I'm thankful that God knows what is best for more than just my cancer and He is in control of everything... even my neutrophils!

P.S. Had a chance to visit Children's ICU today (where I last worked before maternity leave). It was great seeing so many faces that I hadn't seen in months or maybe years. Everyone was so welcoming and caring. It's hard to believe that it's been two years since working there. I miss you (and even work some days).

What I Have Survived Since Feb 12, 2013
(in 196 Appointments)

IVs (successful) x 71
Bloodwork (successful) x 77
IVs or Bloodwork (unsuccessful) x 11
Biopsies x 13 (I think)

Chemo x 14 cycles including:
IV Chemo x 29 doses
Oral Chemo x 308 pills

Bone strengthening infusions x 19
Injections x 9
Brain radiation x 5
Other radiation x 2
Tattoos x 6

MRI x 2
CT x 12
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

Bottoms Up! Yay!

My nieces & nephew wanted to celebrate me getting chemo today with a Chemo Cake! How thoughtful! (I just think they wanted ice cream cake)

Monday, 1 September 2014

Rare Response & Symptoms

As per my normal self, this palliative care patient (me) just isn't following the rules. I am not responding normally to chemo (my response has been much better than anticipated) and while I do have my moments, I certainly do not look like I'm dying. As I was sharing with my oncologist, one of my rare symptoms of this disease is having the urge to host parties with large groups of people and celebrate.

This past Saturday, we had almost thirty people over to our house to celebrate our boy turning two. Nearly every person invited had babysat M at one point or another through these last eighteen months. They had loved on him, taught him things and blessed us incredibly in the process. For each of you, we are very grateful!

And so we celebrated with "Tt is for two" and a flashcard theme since our little guy is very much into learning right now. The house was decorated with "Tt is for..." flash cards with pictures of Our boy doing/involved with/playing with/etc.:
- truck
- tires
- tumbling (why doesn't everyone want to stand on their head on the couch?)
- tug of war (another M was trying to take his blanket and he was not impressed)
- tantrum 
- trouble (there were several of these: M climbing shelves, in the dishwasher, writing on himself with a pen
- tasting (the sand in Maui)
- twosome (JR & M in JR's kennel)

And because of who I am, the food had to start with the letter "t" as well. We had truck sandwiches, tacos, trifle, etc. Occasionally we had to make an exception with stuffed Tomatoes or sTrawberries on a skewer. We had fun!

Two is still the age that the parties are for the big people. And I certainly had fun... so job well done me! The highlight of the evening for me was singing happy birthday. M was happily clapping, singing and shouting as we sang to him. When it came time to blow out the candles, he was able to do it with ease just like we had practised. He especially enjoyed repeatedly sticking his fingers into the sponginess of the fondant.

After all was said and done and the last dishes were washed (thank you friends), we could relax and celebrate more of my family's birthdays and an anniversary with just the ten of us. 

One of my requests for my family this summer was to have family pictures taken. I wanted to have some visual reminders of our family as a whole. I've had to rely on my family a lot this year and I am so very thankful for each of them.

It's been a good week.
The Ten of Us
(courtesy of my friend Wendy of Ciao Bella Photography)

Friday, 29 August 2014

Brain, Bones, Liver & Blood

In April when I was diagnosed with brain metastases, I had three tests. Compiling all of those results, I was told I had about nine lesions on my brain plus some floaters. I had a CT last week & got my results this morning. My doctor told me that only one lesion could be seen in my brain and it's much smaller than in April. The CT does not look for floaters so I can't say if there's improvement or not. This is really good news. In terms of treatment (radiation and chemo), these results are abnormally good!

Then came the not as good news that the cancer in my bones has spread and one of my vertebrae is fractured. That could probably explain why my back has been hurting more lately. Basically, pick a bone from my neck to my hips & it has cancer in it. The report says that my bone metastases are unchanged from the last images... so perhaps I missed hearing this news when I got my last results or maybe there were other parts of the results that were more important to focus on. We'll see if some more radiation would be beneficial for my back pain.

My liver... stable! Yay!

My bloodwork... most things normal except my neutrophils are low. This means I'll wait until next week to see if my neutrophil count is up enough to get my next round of chemo.

All in all, I am so thankful for these results. My doctor actually used the word "exception" to describe my response. He said that most people usually decline when diagnosed with brain mets and floaters. I couldn't help but smile 'cause I was wanting to say... I have thousands (and maybe tens of thousands) of people praying for me and I have a big God who is carrying me through the good and the bad.

We've been praying hard for my brain & liver. Please don't stop. Can you please join me in praying for my bones? Healing of bones with cancer, protection for my healthy bones, pain that is manageable.

Plus, I just wanted to congratulate one of my nurses at the Cancer Agency who won an award: the Amgen Award for Innovation in Oncology Patient/Family Education!  Congratulations! I'm so thankful to have you on my team.

Feeling a little jealous of these healthy looking bones (but not jealous of the metal rod up the bum)

Wednesday, 27 August 2014

Stretch Marks

Stretch marks.

You know what they are. Pregnancy can often be a cause of stretch marks. Growth spurts can also be a cause. And of course, steroids can cause them. They happen when some part of your body grows too quickly and your skin can't stretch/adapt quickly enough. 

I somehow miraculously avoided stretch marks when I was pregnant... but I didn't manage to avoid them with steroids! I have stretch marks in lots of places now... my thighs, my waist, and even my the skin on my face is different.

I have gotten some spiritual stretch marks too. Going from a breastfeeding mom to a palliative cancer patient in a matter of three hours came as quite a shock to me. It was then that I had to decide in whom I was going to give my trust. I felt I could trust my new doctors with treatment plans... although it was difficult to trust them completely as previous medical mistakes had happened. I could trust my family and friends with my emotions and to care for me physically. I learned to trust my church to take care of things I would have been too proud to accept before my diagnosis.

But all of that was not enough. I needed to have my heart firmly trusting in Him and His plan for me. I believe that God hates cancer even more than I do... but I have it and choosing to turn away from God at the lowest point of my life was not an option. The earthquake of this cancer journey has certainly shaken my faith... but instead of causing despair and destruction, the rocks of my faith have shifted and created a foundation that is even more solid.

So even though I have unsightly stretch marks, I can use each little shiny line of skin to remind me of how God is growing me.

He's reminding me to:
- trust Him with my today and tomorrow
- surrender both me & my family to Him
- spend time and have conversations with purpose
- give my body it's best ability to be healthy and trust Him to choose how my body will respond 
- live today fully
- rest in Him
- celebrate

My stretch marks have been earned... not simply something left behind. I'm learning and growing (both figuratively and physically) through my cancer journey... and my body has beautifully ugly stretch marks and scars that remind me of where I've been and where I'm going.

Little Mr. Independent (growing up way too quickly... no stretch marks on him, just bumps and bruises so far)