Saturday, 19 April 2014

It's a dark day today, but Sunday's coming!

Most days I can push through the pain & emotions of this journey. Today I'm not doing it. I wish I could but it just seems like too much.

I've had a bad headache for way too long. Today I've had nausea & vomiting. My back has been hurting for a while and I've been experiencing some neurological changes. And emotionally I just feel tender and afraid.

I have not found anything to be helping my physical pain and I'm pretty sure that I have allowed that pain to affect me emotionally.

Everything combined drove me to visit the ER today. Triage. Assessment. Bloodwork. CT. Wait.

You know, just another Good Friday.

Then we got the news.

My head CT has shown some abnormalities in my brain -- most likely some new breast cancer metsastes.

Ugh. Xhevat and I cried. We tried to text those who needed to know immediately (but missed people in the shock).

Then we were sent over to RCH and I was admitted. As I looked around the others in the four bed room, I look nothing like the other patients. It scared me. Initial nursing assessment done. I lay my head down for the first time comfortably. Then the doc assesses me. He wants more imaging that won't happen until tomorrow hopefully.

"Do I need to be here or can you give me a overnight pass? I will be back whatever time you want me to be here." And he agreed!

So we're all at home. We picked up Matias from our neighbor's who were so fantastic to watch him (they only have girls clothes in his size). Nicole, my sis, arrived after 1am and now I'm supposed to hurry and rest and go back to my inpatient bed early in the morning.

It's a dark day today, but Sunday's coming.

Not welcome sites to see for me 

They're manly pink monkeys, right?

Monday, 31 March 2014

What I'm Learning from Disney's Frozen

Spoiler Alert :-)

While I'm off chemo, I have bloodwork and an oncologist's appointment every four weeks. And every four weeks I go through the anticipation and fear that I will get bad news & have to go back on chemo. February/March has felt like a repeat of August/September being that we went on vacation, I just had surgery and then my doctor's appointment a few weeks later. I was unprepared last October for the news that I had to go back onto chemo so quickly. The tension and the fear have been pretty all consuming at times... especially last Monday when I got my bloodwork done.

What does the movie Frozen have to do with my cancer & bloodwork? Elsa, the older sister, was born with magical powers inside of her that can create ice and snow. Her ability to instantly create winter injures her younger sister and as a result she & her powers are hidden away from everyone. The more she tries to control her powers and emotions, the stronger they become. Years later and after an outburst where everyone sees her magical powers, she feels that the only way to protect herself & others is to escape by herself and live in her ice palace.

While I don't have any magical powers inside of me, I do have a bunch of cancer in me. And as I let my cancer consume more of my thoughts, emotions & life, I lose joy, control and focus. The trust and faith that I have in my God diminishes. And my fear and insecurities tower around me in my own ice palace. From that place it is hard to feel love and live in what I know is true in my daily life.

At the end of the movie Anna, the younger sister, gives up what she believed was her opportunity to be healed to save Elsa's life. Both of their lives were saved.

Elsa: "You sacrificed yourself for me?"
Anna: "I love you."
Olaf: "An act of true love will thaw a frozen heart."
Elsa: "Love will thaw."

I don't want to live in fear. I want to live in God's peace. He knows I have cancer in me and He can heal me from it if He wants... but He can also use my cancer to teach me and others things that we wouldn't have known otherwise. He sacrificed Himself for me & He loves me. His love has thawed my frozen heart.

In the final scene, Elsa uses her magical powers for good to create a skating rink for the townspeople, a... and even a "personal flurry" for Olaf the snowman. What once caused destruction and death was now being used for good and life. I want God to use my cancer for His good and life. He has sacrificed Himself and His love has melted my frozen, broken & fearful heart. I don't know the ways that He might use my cancer for good, but I'm willing to be used and excited to see good that has & will come from my cancer.

P.S. The fear of what my bloodwork results would be overshadowed much of my last weekend. Today I will go to my doctor and receive them officially. I say "officially" because I was able to get my numbers online last week (all legit) and everything is good. I have more of a functioning immune system, my liver enzymes are all normal & my tumour markers are the lowest that they've been since I started this journey! Joy & relief are wonderful feelings! God is good.

Now go watch the movie (again)!

Just a fun movie to watch (especially for us big kids!)

Sunday, 23 March 2014

What Maui Meant to Me

Vacations are never perfect. Well, at least our vacations aren't.  Matias' carseat was forgotten in the car (which meant a quick trip back to the airport parking lot), the poor little guy got a cold, naps and nights of sleep were frequently interrupted, and there were more than several tears and tantrums.

Even with all of the bumps in the trip, Maui was simply wonderful for a number of reasons.

Maui was a vacation from my cancer diagnosis. No one asked and I did not offer that information. I was simply another tourist. Maui held no continual reminders of my cancer that I have in my home, when I drive down certain streets, when I wear certain clothes, when I eat or avoid certain foods, etc. There were no concerned "How are you doings?" There were, however, the occasional "How are you doings?" after watching our toddler who was full of energy run and run and run.

It was snowing here in Vancouver on the day we left and Maui's warmth and sun were just refreshing. Even the rain in Maui was refreshing! I wore shorts and a tank top comfortably (and that's pretty significant cause I usually feel cold and am dressed in multiple layers). The only time I was truly cold was when we watched the sunrise from the top of a volcano crater at 10,000 feet.

It was family time... just Xhevat, Matias & me. We enjoyed where we were but also simply enjoyed being together. Dinners were some of my favorite times when we'd bake fresh bread and have cheese and meat & fruit salad with it. As the little guy won't remember the trip, we took LOTS of pictures. He seemed to always fall asleep or have too much energy at very inopportune moments (ask the flight attendants... they'd agree).

One of my favourite times of the day was when we were heading back to our condo. The building was u-shaped and our condo was at the end of the U (with a beautiful ocean view). To get from the elevator to our place, we had to travel down two very straight and long hallways. Getting "home" meant that Matias had probably been strapped in his carseat or stroller for some time so whenever we got to these long hallways we'd set him loose and he would run and run and run the entire length. If he got too tired, he'd crawl.. but within a couple seconds, he'd be back up running. It was so nice to be able to set him loose (safely) without fear of him climbing over the railing on our balcony (or should I say lanai) or running into traffic or destroying store displays or jumping off the boat.

In the midst of the anonymity came an emails of love, support, encouragement & prayers... and even an offer of babysitting while in Maui from a friend from grade school! I felt loved & cared for.

Some might say that Maui was a break from reality... but it wasn't. It was a reminder to me of another way that I can live. Yes, I have cancer, it sucks and it's scary but I can choose whether I want to live with that fear. I am in the process of learning about my fears and what it means to trust... and by no means have I arrived.

What I Have Survived Since Feb 12, 2013
(in 138 Appointments)

IVs (successful) x 58
Bloodwork (successful) x 64
IVs or Bloodwork (unsuccessful) x 10
Biopsies x 13 (I think)

Chemo x 29
Bone strengthening infusion x 14
Injection x 9

MRI x 1
CT x 7
Ultrasound x 3
Xray x 6
ECHO x 1
Surgery x 2

Parking Ticket x almost one

Whale/Dolphin watching in Maui

Date Night in Vancouver at a Whitecaps Game

Road Trip with my Parents to Kelowna

Saturday, 22 March 2014

How Are You?

How are you?

It's a relatively innocent question. Some just ask out of habit or being polite. Others don't know what to say and so this seems like a safe question. Many people truly want to hear the answer. 

It can actually be a really hard question to answer.

How am I? What do you mean? How am I emotionally, physically, spiritually? Are you asking about how I'm recovering from my last surgery? Or how I'm dealing with menopause & tissue expansions? Or the constant pressure that I feel in my liver? Or about the uncertainty if my cancer is growing again?

Or are you asking about me as a mom and how I'm dealing with an energetic 19 month old who doesn't like to sleep and is an agile (and currently unsafe) climber? Or how I'm learning to cope with saying the same thing over and over? Or if I'm ever bored of trains, Mega Bloks, or farm animals?

Are you wanting to know how I'm dealing with my palliative cancer diagnosis? Or with the news that I'm getting too often of others' cancer diagnoses or deaths?

I've chosen to be fairly open about my journey this last year but I also have areas that are too private to share publicly. And while I appreciate the concern and care when I'm asked how I'm doing, my full answer can leave me feeling extremely vulnerable. If I'm trying to answer the question authentically, it's a really difficult and personal question to answer. And it's usually too much to get into in passing... so most of the time I answer that I'm fine or tired.

{If I run into you this week and you ask me how I am:
1. Please don't be offended if I answer fine or tired. It just might not be the time or place to get into a deeper answer.
2. Add the word(s) "today" or "this week" to your question (i.e. How are you today?). I find it much easier to answer this question. It helps me to narrow down my answer and not be as overwhelmed.}

Enjoying the warmer weather

Monday, 10 March 2014

Cost vs. Benefit (continued)

I just have to say that I have a great support group who rallies around me, encourages me, prays for me and is willing to act to get me the best care available. Thank you. It is an honour to be carried by you.

I also want to clarify yesterday's post as I wasn't as clear as I should have been. Below is my convoluted thought process.

I have really good or great relationships with most of my doctors since diagnosis. And the ones that I can't say that about, I simply haven't gotten to know them well enough yet. I may have met them only once or twice and just haven't developed that kind of relationship.

I have approached my relationship with my healthcare professionals as both a patient and a nurse. I am a patient first but I have some knowledge from my background as a nurse. This might mean that I ask different questions or that I prefer answers as they would answer a colleague. Having said that, coming into my cancer diagnosis I have had only a little experience as a patient, very little experience in terms of adult medicine, and even less experience in dealing with cancer.

Medically, I have been given very generous care (both in terms of my options for treatment and in what it has cost the system financially). I believe that when my doctors have said "no" or "not right now" that those answers were with my best interest in mind... even if I didn't like their answer at the time. I also believe that as a patient/nurse, I am able to ask those same or different questions to advocate for myself (even if the answer will remain the same). And I'm ok with the fact that there may be times when our opinions may differ.

I think that because I can speak with my doctors in an open and honest way that they will occasionally ask me questions that might otherwise come off as offensive... such as the question that was recently asked of me about cost vs. benefit. To give more context  to his question, it was with regards to my breast reconstruction and how they get approval for funding to do surgeries such as mine. Another example was asked by another doctor just after my mastectomies. It was something to the effect of asking if I was content with my decision around my mastectomies even though I needed to restart chemo so quickly afterward. Again I answered yes.  I really appreciate and respect the fact that my healthcare team and I are able to have these kind of conversations.

As a human being and child of God, I know and do not question my worth (and neither do I believe that anyone else is questioning that).

In terms of my health, it is always important to consider the cost vs. benefit (or risk vs. reward). For example, my last surgery. Some of the potential costs/risks include: surgery itself (anaesthetic, bleeding, blood clots, infection, etc.), menopause side effects (hot flashes, night sweats, insomnia, etc.), inability to have more children, lifting restrictions post-op, time to recover, etc. And then there are the potential benefits/rewards: less hormones (less food for my cancer), future cancer (less ability to develop a new cancer which is related to my breast cancer), less cancer (at the beginning of all of this I had breast cancer metastases on my ovaries... by getting rid of my ovaries, I got rid of some more cancer), etc. For my situation, I felt that the potential benefits clearly outweighed the cost of having the surgery.

We live in a time where there are many people wanting or needing access to healthcare. This may be because people are living longer, are living less healthy lives, are living with diseases longer or many other reasons. No matter what the reason, it costs a lot financially.

Healthcare professionals need to make wise decisions about the way they spend their time and resources. And I applaud them for doing that. I want resources to be available for me or others when needed and not simply frivolously wasted on unnecessary procedures or treatments. I believe my healthcare team is doing this to the best of their abilities (even if I don't like their answers at times).

More than likely there will come a day when the "cost" of treatment will outweigh the "benefit" of treatment for me. When that time comes, I hope my heart will be at peace and I will get to enjoy those that are dearest to me.

I am reminded that it is not about how long I live, but who is living in me and how I live for Him.

Sunday, 9 March 2014

Cost vs. Benefit

Since diagnosis, I've asked many questions in terms of what my options were for treatment. Most of my questions were answered with a "no" or "not right now" at first and over the course of the last year many of these answers have turned into "yes." For this I am so grateful.

A few weeks ago one of my doctors said something to the effect of "cases like yours come up often when we talk in terms of funding." In other words, a lot of money spent has been spent on your treatment and care which might be viewed as extravagant or unnecessary as the medical goal is not to cure your cancer. With regards to one of the procedures he asked me, "do you think it was worth it?"

While I don't have a bill that would show me how much has been my care this past year has cost, I know the number is very high (and probably higher than I could afford if I had to pay for it on my own). 

On the other hand, I try not to cost the system unnecessarily. I ask/push to go home after surgery (for many reasons) including the fact that unless I'm having complications, it's cheaper for me to go home to recover. I ask for the least amount of medication to be given to me because I know how much it costs and I don't want it to be wasted. I'm fully capable of giving myself an injection and I ask to do so rather than going into an office and having a doctor or nurse administer it (even if it's the biggest needle I've ever given anyone in my life!).

I know that I'm currently a "burden" to the healthcare system (and I don't like that feeling)... but I certainly feel that I'm a worthy burden. It's not because of who I am or because of what I've contributed to the healthcare system or even because of what I might be able to give back to the system in the future. I'm young, healthy (other than my cancer) & feisty. My cancer is currently responding to treatment and I have a really good quality of life.

And my answer to my doctor's question as to if I think the procedure was worth it is an "absolutely yes!" I am very grateful that I live in a place where I have options for treatment and am not overwhelmed financially to be able to receive it. I've had to make some really tough decisions about treatment and surgeries which impact me now and in the future... and my heart is at peace with the decisions I've made.

Thank you for continuing to carry me.

366 days ago I visited a salon and had my curls cut off. It's hard to think that I might never have those curls again. My boy has his mama's curls and they are so beautiful! I live vicariously through them.

Another creative cake from a dear friend wishing my ovaries farewell!

Wednesday, 5 March 2014

I'm Home

The important things went as planned yesterday. The plans for babysitters (for me & Matias), time of OR, to be admitted or discharged, etc. changed.

All in all, my surgery is done. I learned my neutrophils are back to a normal range. I asked for (and received) some really cool pictures of my insides. I left the hospital with 7 more holes poked into me (IV x 1, bloodwork x 2, surgical stabs x 4).

I slept through surgery (obviously), on the car ride home and basically the whole time since I came home... that's about 17 hours. Today is a new day.

Thank you for praying for me. Please continue to pray for a quick recovery with not too much pain and no complications.

I picked out some special socks to wear yesterday. They had cow spots on them. They reminded me of a dear friend whose mom passed away due to breast cancer. Her mom was not only amazingly kind and loving but also a strong and fierce woman of God. Kids shouldn't have to lose their moms to breast cancer. So yesterday I wanted to honour my friend, Matias, and all the other kids who journey with their moms through breast cancer.

My boy might not like to wear socks... but I sure do!