Will You Come & Celebrate?

It's hard to forget the moment the doctor told me that I had cancer. Many of my other memories about that day swirl around in the blur and emotions of those words. Then came the conversations, phone calls and emails to share the horrible news. My heart just aches remembering those days.

I am almost one year into my cancer journey. A few of my friends have shared some of their feelings about their cancer anniversaries. A common theme is that it can be a very difficult day. I can only guess that I will experience many of the same emotions as my friends.

One of the biggest feelings that we as a family have about this past year's journey is that we have been loved on, prayed for, and supported in incredible ways. And we are so grateful for you!  So we want to celebrate my one year anniversary by having a party in honour of you... each of you who have joined us on this crazy journey.

Will you come and celebrate?

 

 

We would love to celebrate you & celebrate with you!

Please RSVP to celebratingloveandlife@gmail.com.

 

(P.S. If you're reading this, you're invited!)

No Chemo Tuesday

I was supposed to have my last dose of chemo today. But that's not happening. Yesterday, I got my bloodwork done and then went to see my doctor. My neutrophils were critically low again (even lower than last time) and so the plan changed.

Instead of repeating bloodwork today or delaying chemo until next week, my doctor decided that I'm done... i.e. round two of chemo is over.

It definitely came as a surprise but I wasn't as shocked as when round one ended in August. There have been no tears (yet). The way I see it is the path I was on split and now I'm on a new path but still headed in the same direction.

With this round of chemo completed, I can now move forward with some plans. My hair can start growing. My finger nails will hopefully stop aching. I can plan some getaways. I can proceed with my next surgery. I can go to the dentist. I can start putting some dates to some of the things on my "To Do" list.

But this also means that the countdown to my next round of chemo has already begun. During my last break from chemo, I had just ten and a half weeks with surgery in the middle of it. I don't know how long to expect or hope for this time. It isn't anything that is under my or my doctor's control... and so I keep reminding myself that all that I can do is live each day fully and completely (and leave my next round of chemo on the back burner). 

I've started back on the oral medication that I was on in between chemo last time and will be adding a new medication next week. The hope is that these medications will stop my body from creating the food for my cancer cells. While I'd prefer none, I'm ok with a stable amount of cancer cells in me.

Like always, I have mixed emotions. I'm happy about being off chemo & thrilled at the thought of regaining an immune system. I'm looking forward to doing some things I couldn't (or would have been much more difficult) while on chemo. I'll be so happy to not have as many pokes and IVs. Less time in appointments means more time with my family. At the same time, I'm nervous/afraid/a little anxious as to how long it will be until my cancer starts growing again. It's sort of like waiting for the bottom to drop out. It could be weeks, months or years. It's hard to put into words the feeling of expecting/anticipating round three of chemo but not wanting that expectation to control my today. It will be a choice I will have to make daily.

What I Have Survived Since Feb 12

(in 118 Appointments)

IVs (successful) x 55

Bloodwork (successful) x 60

IVs or Bloodwork (unsuccessful) x 10

Biopsies x 13 (I think)

Chemo x 29

Bone strengthening infusion x 12

MRI x 1

CT x 6

Ultrasound x 3

Xray x 5

ECHO x 1

Surgery x 1

Parking Ticket x almost one

Just a Stay At Home Mom

Some days I feel like cancer & being a patient consumes too much of my time and energy. Today has not been one of those days.

I woke up with my husband (at 3:45) and had trouble getting back to sleep. Then I heard crying coming from Matias' room around 6 which was followed by a thud and even louder crying.

It was one of those thuds that you know wasn't good. I found Matias in front of his Pack 'n Play with really big tears rolling down his cheeks. He had managed to climb his feet up the mesh of the Pack 'n Play and climbed over the rail! I have no clue how he landed but he was on his feet when I found him.

After giving him a few cuddles and getting over the shock of what could have happened, I put him back in the Pack 'n Play where he cried for the next hour. I spent that hour curled up on the floor of his bedroom with my pillow & blanket. Just in case I fell asleep and he got out of his bed again, I "slept" in front of the door so at least he couldn't get out of his bedroom. Tired of his crying, he then was put into his crib (even though he hasn't slept well there). Within a couple minutes he'd started to climb the rails of the crib (which could equal an even bigger fall) and got his knee stuck in between the rails. There were even more tears that followed.

We eventually came downstairs. With my glasses on (which I wear ever so rarely), I somehow got a coffee into me and food in front of him. In the next couple hours, my boy:

- found the only two drawers which don't have child locks on them

- played with the knobs on the gas stove

- climbed up the wall by the window to watch JR outside

- climbed up the stove (digging his little toes into the drawer below the oven and using the oven handle as a chin up bar)

- pushed around two bar stools at the same time

- chased around our dog (who weighs four times as much as he does)

- climbed up the bar stools

By the way, none of these things were approved of by me and a lot of correction and redirection was needed.

He then climbed up into my lap and just stared into my eyes with a great big grin on his face. Maybe he was wondering about my glasses or maybe he was simply just sharing a special moment with his mama. With that one look all of my tiredness, frustrations and concerns melted away and my heart was overwhelmed by love for my precious son.

I never asked (or wanted) to be a stay at home mom (which is a whole other story). But today despite all that has already happened, it feels so good to not think about cancer and just be a stay at home mom... and wow is this ever tiring!

P.S. Since the writing of this email, my son has pushed the bar stool with me sitting on it, done a chin up on the counter, tried to pull the laundry basket full of clothes off the table... and the list goes on and on. Did I mention that he's only seventeen months old? He has so much energy and fills each day with an incredible amount of joy! I am so thankful to have him in my life.

The Safety Lock for our Door Handle (which really bothers me since green is locked and red is unlocked... to me, green should be open and red should be closed... what do you think?)

What a Weekend!

It has been a full weekend in this household. Xhevat was busy both days in a course so I wanted to make some special memories by getting out of the house.

Three special memories stood out.

The first was a date... with my son. Saturday morning, we woke up with the intent to hit Starbucks for breakfast. We don't normally get out of the house much but this weekend we had the car & could go as far as our energy allowed us. I am so thankful for sweet treats and coffee indulgences (and milk in a sippy cup) that madefor some precious moments together.

My Coffee Date

The second highlight was an outing alone (A dear friend came and babysat; Matias preferred to call it a date and bought her roses). Christine, a friend from a dozen years ago & cancer survivor, had organized an event for young ladies who have/had cancer. The evening's intent was to allow the ladies a moment to feel glamorous. We were escorted to the penthouse of the Fairmont where we were met with hand scrubs, fancy dresses, hair stylists, wig ladies (this was more up my alley... and we had so much fun!), Arbonne makeup artists, Tiffany jewelry (the gentleman blinging us up said every lady had to have a minimum of $100,000 of jewelry on), and a mini photo shoot. Of course there were also food & prizes and gifts beyond belief.

A poignant moment in the evening for me was at the end of my photo shoot. I've taken lots of pictures in the last year but haven't always felt comfortable having pictures taken of me. I haven't felt that I wanted to be remembered as I was looking/feeling. But Saturday night I took the time (and had some amazing resources) to make me feel special... and my heart felt full.

It was less about the hair or makeup or ($100,000+) jewelry or penthouse suite; it was a brief moment where I could unselfishly love on me (and have others love on me). It was a moment of feeling beautiful inside and wanting to commemorate that feeling! For each of us, having cancer was normal. We didn't have to explain our scars & bruises. There was no shame in our long or short hair or our bald & patchy-haired heads. We simply looked and felt beautiful inside & out!

After a delicious sleep on Saturday night, my heart woke up tired but content. And I got to open the gifts that had been so generously been given to us the night before. Some were especially meaningful as they'd been hand selected by some very special ladies. It was just like Christmas morning all over again!

Christine & Me

As I've shared before, I have been trying to avoid unnecessary germs and have struggled with when and where to go out. I've been missing & craving the community of my church. As getting to church on time is usually a challenge for us, it was going to be extra challenging to try and do this without Xhevat's help.

Everything worked out fabulously, we got to church on time and there weren't even any snotty noses in the nursery (yet another blessing)! It was just good to be with people and in a place where my heart and soul are cared for and filled. It was also a personal accomplishment to be this far into my second round of chemo this year and still have the energy & desire to run after my boy.

My Purse's Essentials for Sundays 

My boy and I had a chance to get out and play, we were able to catch up with friends, and we were loved on in some very special ways. We "ended" our weekend's events with a Sunday afternoon nap. My heart is full.

My Chemo Brain (and its rabbit trails)

Tuesday was one of those days for my toddler...

My boy woke up a little earlier than normal and was unusually unhappy throughout the morning. Things just weren't going right for him (and therefore me too). The books didn't play right. The stacking cyclinders were falling when they weren't supposed to. The wall didn't move when he ran into it. The colouring pencils poked him... and the clip board that he was colouring upon misbehaved and therefore got the brunt of his frustrations. 

We tried listening to music and making animal noises, counting fingers and building with blocks. Food and milk were intentionally getting spat upon the floor (much to my child's amusement & dog's delight) and then my boy would play in the leftover saliva from where my dog had eaten the food (mama put a stop to that form of entertainment). Even cartoons on TV weren't able to capture his attention!

So I gave up. I took a couple minutes to escape to the bathroom (while my boy pounded on the door and wailed) and regrouped.

We eventually made it to nap time & after my husband came home I was able to escape out of the house for a quick grocery trip. Our boy's evening was a little better & a friend (not knowing the kind of day we had) brought us over a hot meal.

You might think the story ends with us going to bed and everything ending well... that would have been nice.

A cranky, crying boy woke us up several times through the night (As a side note, since Christmas holidays our boy has chosen his daddy to be his sole consoler. He refused to be comforted by grandparents, aunts & uncles, cousins... and even his mama... which means that when he's hurt, distraught, upset, etc. I can't do anything to be helpful to the situation. Yup, this is exactly how to make this mama feel worse when she's already down.). It took a while but Xhevat was able to calm him. However, our boy refused to sleep. After another half hour of being awake, he let me cuddle him and eventually fell asleep in my arms... but woke up when I tried to put him back into his crib. And so at 4:30am, he was merrily running around & playing in our bedroom!

As I needed the car for my morning appointment, Matias and I drove Xhevat to work. Exhausted (me, not Matias), I put him back in his crib wide awake. I have no clue how long it took but eventually he fell asleep.

I too went to back to bed... and just to satisfy my brain's itching (and to figure out when I should set my alarm), I checked my calendar to find out my appointment time. It was then I realized that I'd gotten the wrong day for my appointment! My appointment was on Thursday... not Wednesday and I hadn't needed to drive Xhevat to work!

With a tired, frustrated, and itch-satisfied brain, I got a few more hours of desperately needed sleep. I couldn't help but laugh at myself and my mistake. Silly chemo brain.

Our Wednesday was much like our Tuesday. Whether our boy is teething (he had three or four teeth come in over Christmas) or he's going through a growth spurt (he ate two yogurts for his bedtime snack) or he's just out of sorts (why not... I've had my down days lately as well), he's just not quite his normal happy self and needing a little more attention.

Fortunately we saw some sunlight today and all four of us (3 humans and our dog) went for a walk. We didn't go very far but the light and fresh air energized more than our bodies.

My heart feels like it's coming out of the fog and into the sunshine.

Thanks for walking with me and encouraging me through this week's fog. I can see the light.

When JR tries to scavenge Matias' meal leftovers, Matias pushes his way in and claims his territory (and food)

Since learning how to open doors, he's taken up residency in the pantry... here he has learned the sport of yam throwing (he has been able to launch it a few feet across the kitchen!)

A little footprint on my freshly washed floor... a reminder of what (or rather who) is important

Tired

Tonight I'm tired.

Tired of not feeling 100%.

Tired of needing to continually question if I'm helping or hurting my health. Tired of avoiding people & germs. Tired of feeling pulled in different directions. Tired of not feeling able to fulfill dreams and desires.

Tired of IVs and pokes and scans and infusions. Of medications for treatment and other meds to treat the side effects of treatment. Of complications. Of expected and unexpected outcomes. Of checking interactions between treatments. Of normal illnesses which can  be dangerous.

Tired of achy muscles and sore finger nails. Tired of needing to stretch nerves and strengthen muscles I can't feel. Tired of feeling a little winded after going up a flight of stairs. Of not sleeping well. Of needing to shave my head. Of always washing my hands.

Tired of planning life around appointments. Of coordinating services between doctors & health authorities. Tired of cancelling on friends. Tired of not making plans because of potential treatment or not knowing how I will feel.

Tired of not being able to give my husband or my boy all that I want to give. Tired of a messy brain & household. Tired of wanting to do things and not being able to do them. Tired of the emotional roller coaster. Of the reality of facing life & death each day. Tired of things being so complicated.

I don't know if it's just January, the rainy weather, a difficult season or just working through my new reality... there are many reasons why I could be tired tonight... and I'm hopeful that tomorrow will be a better day...

... but for tonight... I went out and got a cheesecake (and some blackberries to make it healthier) and I ate it.

Because of My Husband

I got chemo yesterday because of my husband.

My neutrophils were way too low on my bloodwork from Monday. It was my first critically low value -- not exactly the way that I'd like to get unexpected results. Chemo would not be given with neutrophils as low as this as I would be in too much danger of not being able to fight even simple bacteria and viruses that are normally in/on my body (let alone everyone else's).

Yesterday, the plan changed several times. At various points of the day, bloodwork was scheduled and cancelled, chemo was scheduled and cancelled, I'd received some difficult news & had a friend who had gone through breast cancer coming over. Too much was going on and I just didn't have the energy to speak up for myself.

So my dear husband asked for the phone number and spoke with one of my healthcare team members who agreed to allow me to get my bloodwork done. After a few phone calls in which some miscommunication was clarified, my plans for bloodwork & possibly chemo were set.

A few things happened when I was waiting at the Cancer Agency after getting my bloodwork done. I found out that my bloodwork from the previous day continued to show very decent improvement for my tumor markers. My liver enzymes haven't come down as quickly as I'd like but are still improving. I was also being entertained by a text message conversation with a dear friend which left me smiling and giggling perhaps a little inappropriately with everything going on around me.

While waiting I was also able to hear or take part in several conversations -- two elderly men tenderly reminiscing about wreaking havoc in their radiation treatments (one of the men had just found out that his cancer had gotten much worse and he wasn't sounding very hopeful) and an elderly couple who shared about family (and were both going through cancer treatment). I'd guess that I was the only patient below 65 or 70 in that waiting room but we are each dealing with the fragility of life, cry & tear up often, and will quietly share about the things that bring us joy to our souls.

All the while nurses would pass by & wave as they'd bring their patients into the chemo room or just stop by to talk. Several would ask why I was there because they were aware of Monday's critically low value. And then one came out with a big smile and said that my neutrophils had come up to the minimum number at which I could get chemo!

My precious husband (who'd been anxiously awaiting my news) just happened to call me as the nurse who confirmed my neutrophil count was bringing me into the chemo room. By the excitement I heard in his voice and the screaming from him and my son, they were overjoyed!

With my anti-nauseants, steroids & chemo in, I headed home, made a quick dinner, got a few grocery essentials, and headed out to an evening meeting. I stayed out past my bedtime but went to sleep overjoyed & tired but yet filled with energy.

I got my chemo yesterday because of my husband. I am truly blessed to be called his wife and have him standing next to me and holding me up on this journey. He is amazing & I love him incredibly.

Just after he asked me to marry him... it might not be in focus but reminds me of our joy, love & commitment, and how he has made me feel protected.

Flu Shot or Not

I have been wanting to get my flu shot this year... but it hasn't happened yet.

As I've been getting chemo and my immune system is fragile, I've been told that I can only get the flu shot when I know that my immune system can respond to the vaccination. Yesterday I had planned to get my bloodwork, find out my results and get my vaccination. Unfortunately, my bloodwork showed that my neutrophils were way too low to get it (and may be too low to get chemo this afternoon).

In the past I've received the flu shot to protect myself. I've worked in a place with lots of germs and wanted to protect myself as much as I could from at least a few of the nasty bugs my patients had. As a nurse I also had masks, gowns &/or gloves that were readily available, would wash my hands too many times every shift until my hands dried out & cracked, and could keep "germy" people in isolation rooms.

This year I'm also wanting to protect myself but in a different way and for different reasons. I'm doing my best to avoid germs. I've been trying to "isolate" myself at home a little more and reschedule visits when others aren't feeling well. I shop for groceries and presents when stores will hopefully be emptier. If you're sitting close to me in church, you'll smell my hand sanitizer being used after we shake hands and before communion (and as we're driving home).

My immune system is fragile so I'm asking you to help me protect myself . I want to be able to get chemo so that I can live longer. And I don't want what might be a simple, inconvenient cold for you to become something much more serious and possibly life-threatening for me.

So I have two requests for you:

1. If you've been wanting to get your flu shot and have just been putting it off, please get it. If you're on the fence about the flu shot, let your doctor, pharmacist, public health nurse, etc. address your thoughts and concerns. The internet has lots of information which can be accurate, misleading or inaccurate and may not be the best source for making medical decisions.

2. Whether or not you get a flu shot, please be careful with the germs that you share with others. We all have germs and can be active in stopping their spread. Wash your hands often. Cough into your elbow. If you're sick & germy, please stay home, drink your fluids and take care of yourself (& try to kept your germs to yourself).

Right now I can't get the flu shot to protect myself... but many of you can and all of us can help stop spreading germs. Whether you get the flu shot or not, thank you for doing your part in keeping me & others like me a little healthier.

My Highs and Lows of 2013

- Watching my son accomplish many firsts like crawling, walking, running, first words, first birthday, and many more

- Having my husband become a Canadian citizen

- Too many cancer diagnoses amongst our family and friends

- Feeling continually overwhelmingly loved on and blessed by my family, friends and community

- Having my family move in for a few months to take care of me & my boy

- Not being able care for sick family members

- Becoming a stay at home mom & patient

- Those first CT results after starting chemo of "improvement everywhere"

- Chemo-prayer-apy

- Having access to excellent healthcare close to home

- My team of doctors, nurses & support staff... an amazing group of people I have come to depend upon

- Minimal chemo side effects

- Some alone time at a beautiful resort

- Being "well" enough to be able to have mastectomies

- Needing to start my second round of chemo after only ten and a half weeks off chemo

- No hair for Christmas

- Ending the year with less cancer

- Extra special family vacations in the summer and at Christmas

- My marriage & my family... I can't imagine going through this year without my husband or son (or even my dog)

- Being both alive and very much living life at the end of the year

- Having my faith tested through suffering & learning to depend on God even more

Perspective (Highs and Lows are all about perspective. We choose which we make bigger based on how much of our lives are consumed by the high or low.)