Why I Count

It may seem ridiculous to refer to the immensity of a poopy diaper by the number of wipes taken to properly clean off the aforementioned poop (that was a seven wiper diaper!). Or to count the number of police vehicles with their lights on seen on a recent trip to Seattle (6 going, 55 returning... the President had just landed and the I-5 through to downtown was clear!).

It might also seem just as ridiculous to count the number of appointments, IVs and tests I've had. If you've worked or experienced the the oncology world at a hospital for kids, you might know why I do this. Children are given necklaces and a bead is placed upon it for having gone through various tests, procedures, treatments, etc. Each bead represents an accomplishment... a badge of honor... the survival of difficult and sometimes very traumatic experiences. It does not mean that you've had to go those experiences without tears or ugly words or difficulties. It just means you survived and are on the other side of that bump or mountain. But as you look at the necklace and all of the various coloured beads, you realize how much you've endured and how far you've come. It's an expression of the journey and a celebration of things past!

I've worked in pediatrics for a reason. I'm a kid at heart. I like simplicity. I like clarity. I'm very easily distractable. I have a kid brain.

There's no way to quantify how my life has changed since my cancer diagnosis. There's no way to translate the amount of tears I cry into an understanding of my struggles. There's no way to grasp the present joy and anticipatory pain that I experience when I say good night to my husband or little boy with the words "Never forget how much I love you."

I count for this reason.

These are my milestones. This is how I've spent my time these last ten months. This is why mama is sometimes tired and puts on a video rather than playing with the toys. I'm not just sitting at home dwelling on impending doom and death. I'm as active as I can be and actively trying to do things to live a purposeful life. 

Here are some random facts about the things I count. Sometimes an appointment is fifteen minutes, sometimes it's five hours. Most of my IVs have been in my right arm; all 27 doses of chemo in my right hand (this in and of itself is pretty amazing!). And most times, IVs and bloodwork have needed only one poke! Then come the other tests. I'm pretty sure I'm glowing with radioactivity... but then again these tests have made it possible to see what can't be seen when you just look at me.

I'm truly thankful for each of these things listed below & I'm proud of myself for having gone through them. I'm blessed to live in a place where my main expenses are for parking and some medications. I'm a big kid and don't need a necklace (plus as a friend said, "the beads would have to be very small or the necklace very long!"). But my kid brain does need some way to quantify all that's gone on... and this is how my kid brain expresses it.

What I Have Survived Since Feb 12
(in 104 Appointments)

IVs (successful) x 51
IVs or Bloodwork (unsuccessful) x 8
Bloodwork x 54
Biopsies x 13 (I think)

Chemo x 27
Bone strengthening infusion x 10

MRI x 1
CT x 6
Ultrasound x 3
Xray x 5

ECHO x 1

Surgery x 1

Parking Ticket x almost one

Thankful

Today I'm thankful for my doctor and nurse. It is good to know I have two people who take the time to hear my concerns & joys and respond to each of them (I have an amazing medical team of MANY people but today I'm especially thankful for these two individuals).

After a night of interrupted sleep, Matias and I headed off to the hospital for bloodwork, a "coffee" date (I had sips of a chai latte while attempting to feed and entertain my boy), and a doctor's appointment. As usual, Matias shyly smiles at people in waiting rooms, cafeterias, offices, or wherever people will give him attention. If he's not in his stroller (or otherwise restrained), he's running around wherever he can, learning how fast he can run the opposite direction from me and hearing how much his voice can echo in large spaces.

I know he brings me an incredible amount of joy in my day, and while it may require a little more energy and flexibility to bring him along, it is good that he is able to bring a smile to many others' faces.

The beauty of stat bloodwork is that I get to find out the results quickly (something the PICU nurse in me really appreciates). By the time we finished our date, my doctor had my results and shared that it appears my liver continues to be less irritated & my neutrophils are high enough to get chemo tomorrow. I'm thankful for both. A CT next week will let us "see" what chemo is doing to my liver lesions.

So much has changed in the last year and it is often too overwhelming to think of what this next year may bring. Today I'm thankful for my doctor, nurse & bundle of joy/energy. I'm thankful that most of our ornaments bounce and that it is not the end of the world if they break. I'm thankful for the simple and exquisite beauty of white lights. I'm thankful for the hope and promise of Christmas. And I'm thankful that all I can do is take one day at a time.

Still trusting God with my future...

 

Last year: the first ornament on the tree

This year: enamored by white lights

(As promised, the short fundraising video for the Breast Health Clinic at JPOC can be viewed at https://www.youtube.com/watch?v=XvaSSlO0NVE.)

The Fundraiser

As promised, I wanted to share some pictures of this past Friday's event & fundraiser... enjoy! Still waiting on the link to the video... will share it when I get it.

The group raising funds for a new piece of equipment for the Breast Health Clinic

Me & My Date

Two of the nurses who were with me through my day of diagnosis

One of the dancers (who didn't stop moving for whole song... and it was a long song!)

A little flirtatious dance number (as best as I could translate from Punjabi)

Some traditional singing, strumming & drumming

After the program & 10pm dinner, the music & dancing started (and continued way past my bedtime!)

What are Your Plans for Christmas?

It's a natural question this time of year. I usually pause. And then I answer that we plan to see family but don't know exactly how/when/if that will be a possibility. More than likely, it depends on when I'll be getting chemo.

[That is somewhat the story of my life right now. I'm able to plan this week and perhaps some of next week but everything can change very quickly. Chemo depends on my neutrophils. Outings depend on how we're feeling. Babysitters are dependent upon availability and if there is sickness in their houses. Appointments are my constant but how many and how often are out of my control.

None of these things are inherently bad... it just means that plans are held loosely and when things come together, we seize the opportunities! And I'm learning to plan in pencil (or rather in the electronic world of edit & delete).]

If this cycle goes well and my neutrophils are high enough, chemo will be the week before Christmas... if not, chemo will be on Christmas Eve (right in the middle of my husband's week off). I'd prefer to have chemo the week before Christmas but as with everything in my life right now, I submit my plans to the One who knows what He's doing. And if I'm supposed to be in that chemo chair on Christmas Eve, then so be it and we'll have a fabulous time! We'll make it a Christmas Eve that those nurses and patients won't soon forget!

While the tree may not have a single Christmas present underneath it... I'm eagerly anticipating family, time away, and being reminded of my Christ at the beginning of Christmas.

What a Week!

It's been quite the week! After coming off a very relaxing long weekend, it's been a busy week for me mentally.

This past Wednesday I had the opportunity to share my experience with fourth year nursing students at TWU. I presented a patient as a case study and asked them what they knew about the patient. I then told them I was that patient and shared my story. As I was speaking to my potential future nurses, I wanted to share my story through the nurses I have met on my journey and how they have impacted my journey. I shared about my colleagues, labour/delivery nurses, public health nurse, nurse navigator, and my many chemo nurses. I also shared two lists of things that I have found helpful or not so helpful on my journey.

I then asked them (again) what they knew about the patient. As nurses and Believers, I encouraged them to not see patients as a diagnosis or list of tasks/duties to accomplish. Rather I encouraged them to live out the life and hope that we have in our hearts as we come alongside our patients and their needs.

It was wonderfully strange to be back in the classroom in which I was learning to become a nurse. It was also an unexpected blessing & encouragement to meet a friend and daughter of two of the nurses that I'd mentioned in my story! 

Then on Friday I was asked to attend the fundraising event for which last week's video was made. A friend of mine joined me for this evening of fun and cross cultural experiences. The group hosting the event was an East Indian ladies' group. The food was fabulous, the crowd was lively, the entertainment included singing and dancing from preteens to senior citizens. The room was filled with the delicious aromas, colourful saris, bright lights, energetic music, and the constant din of happy conversations. And I got to take this all in with my dear friend, newly made friends (cancer survivors), and two nurses and a doctor (and her daughter) from the Breast Health Clinic. My story was shared not only in the short video clip but also several more times through the evening in conversation. And when asked how I could be so positive, all I could say is that my faith and my hope are what give me the joy to get through each day.

I went home physically and emotionally tired but thrilled for these opportunities.

Back at home, we've had some sickness ("just" colds & flus) going through our house over the last couple weeks... first Matias, then my mom, my dad and now Xhevat... very selfishly, I really don't want to get sick. So we're sticking close to home & trying not to share any germs or have them shared with us. I'll still be going out for appointments and having some (healthy) friends over but we're trying to keep things simple to regain our health.

Friday Evening's Adventures

(more pictures to follow)

An Unexpected Weekend Away

It is hard to plan in advance with constantly changing chemo times & extra appointments being added. With this new chemo I haven't learned when I'll be feeling enough to be active or when I'm just going to need to rest.

Due to an unexpectedly good week with minimal side effects, a long weekend, and an offer of a friend's place, the three of us managed to escape to Whistler for the weekend (and JR enjoyed playing at his doggy hotel).

Although we drove up at Matias' bedtime, he didn't enjoy the trip up very much and screamed the entire way. This certainly made me wonder if we'd made a good decision to take a snotty-nosed boy on a weekend away. Of course once we arrived in Whistler (now way past his bedtime) he was back into high energy mode and didn't want to fall asleep. We felt as though we lost a few brain cells with all of the screaming.

Waking up to a warm cup of coffee and the snow outside was just wonderful! It drizzled the entire day Saturday so we spend most of it indoors relaxing & watching movies. Sunday, on the other hand, was sunny & crisp! Matias' favorite part of the day included making the snow crunch by stomping it down & running in the opposite direction we were going.

We feel refreshed & so very thankful for a weekend away. A weekend without thinking or talking about cancer. No one knew our story. I actually fit in wearing a toque. We were just your average tourists.

Sometimes anonymity is really a blessing.

Matias & the Bears

Enjoying Whistler

Opportunities

One of the things I've been praying for on this journey is for there to be purpose from my cancer for me and others.

For many years I've wanted to be working overseas as a nurse and for a time I was able to do that. Right now both of these have been put on hold. For the current moment, my role is being a wife, stay-at-home mom and patient. But I want to do more... and I've been praying for more.

Let me share with you about two special opportunities I have. One was to be in a promotional video to raise funds for a piece of equipment for the Breast Health Clinic at JPOC. I was asked to share my story to put a face to the need. This video shoot happened the day before yesterday.

I'm looking forward to my second opportunity as well. Next week I've been asked to share my story to nursing students at TWU. The desire here is to share my personal experience of what has been helpful (or not) along the way so that as future healthcare providers, they can provide more competent care through the journey (their words... not mine).

These are just a couple of the opportunities that have come my way & I am thrilled! Especially now, I want to be used & I'm thankful for these opportunities.

On a side note, chemo went well. I got my red chemo injected. Since you all can't be seated beside me watching this, I thought I'd include a picture... the red is my chemo... NOT blood. Cool, huh? As well, I'm happily reporting that nausea so far has been minimal & I've had no vomiting. For this I'm thankful. Thank you for continuing to keep us all in your prayers.

Getting Chemo

Peeing Red

Tomorrow I'm going to be peeing red... that's right... peeing red! It's one of the side effects of my chemo which I'm happy to say that I'll be receiving tomorrow.  My neutrophils are at a totally acceptable (actually normal) level to receive chemo... much, much higher than last week!

And on top of that, my liver enzymes appear to be stable in comparison with last week... which means that waiting an extra week to get chemo hasn't been bad for my liver.

Thank you for praying with me for this! And I'm thankful for how He chose to answer our prayers.

I've shared earlier that I've been struggling with some anxiety and I think my anxiety has been affecting how I've been sleeping and the amount of nausea/vomiting I've had. So I've changed a few things in my life (added a couple extra medications) and have been trying to surrender my worries, fears, plans, etc. to the One who is in control.

So tomorrow I have two appointments... one with a dietician and another for chemo. I'm looking forward to seeing some familiar chemo nurses and getting chemo. And as far as the side effects go, I'm hopeful that they won't be as strong or long lasting as last time. We'll see.

Thank you for continuing with me on this journey.

What I Have Survived Since Feb 12
(in 93 Appointments)

IVs (successful) x 48
IVs or Bloodwork (unsuccessful) x 7
Bloodwork x 52
Biopsies x 13 (I think)

Chemo x 25
Bone strengthening infusion x 9

MRI x 1
CT x 5
Ultrasound x 2
Xray x 4

ECHO x 1

Surgery x 1

Parking Ticket x almost one

Ginger for Nausea

Stage IV

It's hit me hard this week that I've got stage IV cancer. I've had a wonderful week and I feel good about where my heart is... I also am reminded that this isn't my first time getting chemo and my body hasn't had much recovery/rest time between treatments.

On Monday I found out my neutrophils were too low to receive chemo. I asked my doctor about a specific medication that could help increase the number of neutrophils I have and was told that it wasn't covered for people with stage IV cancer (and it's quite expensive).

It's hard to hear that because I have a IV in my diagnosis that I don't have certain treatment options... but then again, I've been told no before for various things (physio, massage, mastectomies) and the no has turned into a yes.

I can feel the inner youngest child gleefully coming out in me when the yes happens. :-)

But I also know that this answer might stay a no because on paper my situation doesn't look very good. And as much as I don't like that answer, I've been on the other side as the healthcare professional and understand that there needs to be guidelines for palliative treatment.

The rest of my week was filled with quality time with a dear friend. We managed to get out of the house for church, multiple grocery shopping trips & ice cream at the beach. We also had lots of time to talk about life and death and what's going on in our hearts.

In saying goodbye or see you later or whatever you want to call it, I was reminded that this could truly be a goodbye for us. I know that it's easy to say that any of us could die at any time and we should live life that way. That's a great thought... but realistically we rarely do that. In many ways knowing that I have stage IV cancer makes things easier because I have the opportunity to talk about many difficult subjects. I know my cancer can kill me and I am choosing to live my life with the hope I have in Jesus.

So I'm caught between knowing that I have a lot of cancer in me but yet also knowing that I'm fully alive and living right now.

I really would like to get chemo on Tuesday. Based on last week's bloodwork, it appears the chemo is working... and so even if it means fatigue & nausea/vomiting, I want it. To get chemo means my neutrophils need to be high enough. And I believe that even without the medicine, God has the power to make those numbers be what they need to be. Please join me in praying this way.

The potentially scarier thing to me is that if I can only get chemo every four weeks I want my chemo to still be effective against the growth of my cancer. Again I have no control over this and pray that my cancer gets kicked back a bunch so that my liver can live healthier.

So again this week I'm continuing to entrust my life, my neutrophils and my liver into His care.

A Beautiful Necklace I Was Given Today