Just Another Sunday

Yup, it was a typical Sunday in our household. The morning busyness to get ready for church. A great time reconnecting with people we haven't seen in a while (I've been hiding from their germs really). Lunch, an afternoon nap & Xhevat playing with JR. And an evening filled with (us) building and (Matias) destroying our mega block creations.

My new normal has certain things that from the outside look just down right silly:

- hats or wigs (It's cold without hair which is why I wear hats most often these days... whether they be simple, fancy or silly)

- gloves (of the medical variety are worn for cleaning, changing diapers, cooking & washing dishes... all to avoid getting unnecessary bacteria under my infection prone finger nails)

- sweat pants (I'm really not trying to impress anyone while I'm at home... and sweats are really comfy!)

- Kleenex (While we laugh more than we cry in this household, Kleenex is used for tears, runny noses, spilled milk, etc... and boxes of Kleenex are positioned regularly throughout my household)

Church clothes & jewelry (with the addition of some lunch prep gloves, a knife & a warm toque)... doesn't everyone look like this making Sunday lunch?

Merry Christmas

Ten months ago I did not know if I'd be celebrating Christmas with my family this year. 

I am & are we ever celebrating!

Today I'm especially thankful for the Reason for our hope. I'm painfully aware of the fragility and gift of life and am thankful for our Emmanuel -- God with us.

From our family to yours, merry Christmas!

If I had needed chemo on Christmas Eve

While it didn't happen, I knew that if my chemo was delayed this week that I would need to be getting chemo on Christmas Eve. Weeks ago I got to thinking about how bad it would be to be getting chemo on Christmas Eve -- celebrations with my family would be much more complicated and the chemo room was not where I was wanting to be. This was not the way I wanted to be celebrating... and probably most people in that room wouldn't want to be there either.

But as time went on I knew I didn't want to be a grumpy, Grinch-like patient on the eve of my Reason for joy. So I changed my attitude and prayed that God would make my body ready for chemo whenever He could use me. I wanted to radiate my joy and peace in Him in that chemo room.

Yesterday He did just that. And it was confirmed by my chemo nurse who told me that she didn't believe in coincidences and that a Higher Power had me sitting in that chair at that time to bring joy to the discouraged patient next to me. She called me her Christmas angel.

My plan had been to make up goodie bags for patients and staff and deliver them on Christmas Eve -- a little gift to others to encourage people who needed love and share the joy and hope that Christmas means to me. Even though yesterday wasn't Christmas Eve, some of the presents were handed out and it was so much fun to see the nurses and patients faces!

Below are the notes and contents of the different bags that were made up for the patients and staff:

Note For the Patients

Dear Friend,

 

While I don’t know your story, I am assuming that cancer has touched your life this year because of where you are sitting today. I am so sorry that you’re having to go through this… but I’m glad that you’re able to be here today and I hope that the chemo that you’re receiving will be life-giving with minimal side effects.

Please accept these little gifts for Christmas. I hope they bring a smile to your face, a little warmth to these cold days, and most importantly the knowledge that you’re not alone on this journey.

Merry Christmas & Happy New Year

From Another friend (and her family) who has spent time in the chemo room

 

Christmas Chemo Care Package

(for the patients)

· A little ornament (a little sparkly goodness by which to remember this season)

· A note card (write a note to yourself for Christmas 2014 or to someone who you’ve really appreciated in 2013)

· Tissues (because the holidays can be emotional and hospital tissues are like sandpaper)

· Sudoku and Christmas Carol Pictures (sometimes we need something to occupy our time and distract us while we sit in those comfy chemo chairs)

· Antibacterial hand gel (Christmas holidays + seeing lots of people + lots of opportunities to spread good cheer & germs = a good reason for antibacterial hand gel)

· Tea (to warm you up & soothe your heart on our cold winter evenings)

· Ginger candy & candy cane (to calm nausea)

· Party blower (to toot your horn when you’ve finished chemo before Christmas… celebrate getting out of the chemo room!)

Note For the Chemo Staff

In all honesty, I certainly could have done without getting to know each of you this year… but as I didn’t have a choice in that matter, I am very thankful for the role that each of you have played in my life in 2013. Due in part to your involvement in my life, I’m able to be celebrating Christmas with my family this year (and this is something that I no longer take lightly).

Christmas has always been a special time of year for my family. Together we remember and celebrate the promise that Christmas has brought and the hope for a certain future. This is the reason why I am able to have joy in spite of my innumerable reasons for spending time with you.

Thank you for giving of your time, care & hearts to take care of me (and many others) this Christmas. Thank you for treating me as a patient and a nurse. Thank you for asking about my son and remembering which vein has a valve in it. Thank you for continuing on this journey with me. Merry Christmas!

To many more Christmases in the chemo room!

Krista (Xhevat & Matias)

Christmas Chemo Care Package

(for the staff)

· A little ornament (a little sparkly goodness by which to remember this season)

· A note card (write a note to yourself for Christmas 2014 or to someone who you’ve really appreciated in 2013)

· Tissues (because the holidays can be emotional and hospital tissues are like sandpaper)

· Sudoku and Christmas Carol Pictures (sometimes we need something to occupy our time and distract us while we sit in those comfy chemo chairs)

· Tea (to warm you up & restore your energy on our cold winter evenings)

· Candy cane (to calm your patient induced nausea)

· Biscotti (Cherry Rum // Gingerbread // Orange Raisin Almond)

· Chemo socks (cause sometimes it’s ok not to be too serious)

· Party blower (to toot your horn when you’ve finished chemo before Christmas… celebrate getting out of the chemo room!)

My precious boy helping me pack (or rather unpack) the goodie bags. He put the package of tissues into each of the patient's bags all by himself. While it took a lot longer, we it was a family effort.

Occasionally distracted by what was on TV but still wanting to be a part of the action!

No Room At the Inn

My Monday Morning

After dropping off my grumpy, overtired boy at a friend's home, I head off to the hospital for my morning bloodwork and doctor's appointment.

I receive mixed news.

My neutrophils are high enough to get chemo but not high enough to get my usual dose. I'll need to get some repeat bloodwork tomorrow before chemo.

My CT results aren't in yet... so no news there.

My last bloodwork shows that my tumour markers have gone down considerably (less tumour markers = less cancer). So that is good news.

I ask about my chemo time for tomorrow and am told they can't give it to me yet. This confuses me as I've usually been given chemo times days in advance. I ask a few more questions and find out that they are fully booked for tomorrow and I'm on the waiting list.

I didn't know that such a thing exists. However I know that I really want to get chemo tomorrow. 

After the initial surprise/shock of being on a wait list for chemo, I realize that for me to get an appointment time someone else's chemo will need to be delayed or cancelled. That bothers me as well... as someone else's plans for Christmas will have to be changed.

I tear up on my drive home knowing that it is all beyond my control. I don't know when or if I'll get chemo tomorrow. I don't know when or if or how to arrange for a babysitter for Matias. Selfishly I want chemo. And there's nothing I can do but ask and wait.

It reminds me that there was no room at the inn in Bethlehem. Even with the best of plans in difficult circumstances, so many things are out of our control and all that we can do is ask for Him to provide.

Later Today

When we get home my boy chooses a nap over eating lunch. I'm able to share my mixed news with my sister & a friend. I'm glad to have others on this journey with me.

A little later while talking with my friend, the phone rings and I'm given an appointment time! Not only does that mean I'll be getting chemo tomorrow but I also won't be needing to find a babysitter as Xhevat will be done work!

No room at the inn? It's not a problem for Him. He will find the perfect room. Tonight I'm thankful for the stable.

A Haitian Nativity Scene made of clay and coconut

(photo courtesy of Lemuel Ministries in Haiti http://lemuelministries.blogspot.ca)

Overwhelmed

Matias and his mama have learned something new.

We often have days when we are so overwhelmed that we dissolve into a heap of tears. My tears are usually silent and can be brought on by something as small as a look or thought. Matias' tears, on the other hand, are usually big and dramatic with back arching and limb flailing. They can be brought on by the "wrong" snack or because the large plastic plate doesn't fit into the wrapping paper tube.

We each have our own struggles.

On a particularly difficult day this week when mama's tears were coming all too frequently and mama couldn't handle the back arching, we tried something new. I turned on some Christmas carols (Matias loves music), picked up my child's rigid and wailing body, and together we danced our frustrations and tears into surrender and giggles. And we danced and danced until mama was out of breath.

While not every situation may be drowned out by the music, it is one more way we are learning to face and work through our struggles.

Tomorrow will be my bloodwork and doctor's appointment and I'll find out if chemo will happen on Tuesday. I'll also hopefully find out my CT results. I'm nervous.

The tree has been decorated. The presents are wrapped. The baking is done. The next item on my list is to find out when I get chemo.

(I think my boy and I might need to have a few dance dates today to work through some emotions before I get my results.)

After having a day when I felt emotionally overwhelmed, I received this basket of goodies (and a bunch other things). Then overwhelmed turned into overwhelmingly blessed. Thank you MOMs!

Another gift... a necklace with a bead for each milestone. Here's to many more beads! Thank you friend.

Hunkering Down

The big snowflakes outside certainly have made it easier to get curled up under a blanket and not go outside... not to mention the cold temperatures (and for those of you who think I'm a wimp for calling these temperatures cold, I can tell you about the winter it was so cold my toilet froze up and cracked or when my living room was colder than my freezer or walking to school when it was -50 Celsius with windchill). I understand cold temperatures. I just like being warm... so I'm staying home.

I'm staying home for other reasons too. I really want to get chemo next week and I don't want to get sick (I've heard of too many nasty bugs going around).

Getting chemo around Christmas poses certain challenges:

- trying to organize chemo & other appointments around statutory holidays 

- trying to plan time with family but realizing that all plans might need to be changed depending upon when my body is ready for chemo

- trying to get all extra shopping/baking done when I have my bursts of energy

- coordinating bursts of energy with figuring out when & where to shop so as to minimize my exposure to other people and their germs

- trying not to get caught up in doing things & reminding myself to ponder and treasure this Christmas

Although I've been sleeping better, I'm tiring more easily. I've had a sore throat and cough for six weeks (nothing serious... just irritating more than anything). I have a few mouth sores that aren't healing as quickly as I'd like. My finger nails are still slightly concerning some days (today they're ok). Physio is going well and I'm very close to getting back to my full range of motion in my arms/shoulders. And while I'm feeling well overall, I'm feeling a little weak and vulnerable.

So, I'm choosing to spend most of this week hunkering down at home with my family. I'm living in my pyjamas, taking my multivitamins, drinking lots of tea, drinking my greens supplement (since I LOVE leafy green vegetables... sarcasm intended), washing my hands frequently, etc. I'm doing all that I can do to avoid getting sick and trying to encourage my neutrophils to multiply so that I can get chemo.

On Monday I'll have my bloodwork and doctor's appointment to find out if I'll get chemo on Tuesday.

Should my neutrophils not be high enough on Monday, it will be ok. I'll definitely be disappointed but I know it's not the end of the world. I'll get chemo a week later (on Christmas Eve) & I'll do my best to make that chemo room the place to be on Christmas Eve! This is all a part of His plan and I trust He knows best.

P. S. Thank you to the people who put together the two lovely gift baskets we received last week! I don't know who you are but wanted to let you know that one of the baskets had two things that were on my wish list (one of the things I'd asked my family for and the other thing I hadn't even said I wanted it aloud!). The other basket was filled with treats for the whole family. Thank you especially for thinking of special treats for my husband & son!

Drinking my greens... Yummy!

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

Changes in Plans

My last post had a few... "If this happens, then the plans are for this to happen." And when the first thing doesn't happen, then plans change.

I got up bright and early to go and get my bloodwork done at the hospital. A poke and a miss and another poke later, my blood was in the hands of the lab staff.

Then breakfast at the hospital while I waited for my appointment -- a few minutes to relax, gather my thoughts & write down my questions. My friend and my boy were going to come along for the appointment but since he's been feverish, I didn't think the Cancer Agency was the best place to bring him.

So then was the appointment. First I got to see my favorite nurse who has been a huge help to me throughout this whole process. She'd been off for a bit and it was wonderful to see her again. And then after this came the doctor.

The good news: my liver enzymes are going down (i.e. My liver doesn't appear to be as irritated as it was three weeks ago). This hopefully means that the chemo is working. For this I'm grateful (and it makes two weeks of vomiting on/off seem worth it). I was given a few different suggestions of how to better cope with my nausea & vomiting, sleeplessness, and weight loss. We'll see if those work.

The other news: My neutrophils (the cells that fight infections) are really low... too low in fact to get chemo tomorrow. This is sort of surprising as I've only had one dose of chemo but not really that surprising as I haven't been off chemo for too long and my poor bone marrow has needed a little bit of time to recover.

So chemo is delayed until next week and I don't plan to be puking this week.

Am I disappointed? Not really... nor am I happy. If my body isn't ready for chemo, I can't really do anything about that. I'm glad the chemo appears to be working and I'll get more when my body is ready. In the meantime, I'll rest up.

P.S. Enjoyed another reflexology session tonight. I'm sure gonna miss my reflexologist when she goes back to Haiti!

Chilling with my dear friend

Losing It Again, A Friend & Chemo

Well folks... it's started to happen (again). This time I'm more aware of what's going on and so I can recognize the signs earlier.

I'm losing my hair again.

At first it feels a little itchy like you've worn a hat for too long or you haven't showered in a few too many days. A few strands start to fall out. Then come the incessant pins and needles... which means I'll be shaving my head in the near future. The pins and needles feeling can be downright painful and irritating each time a strand of hair moves. Shaving simply reduces the number of opportunities hair has to move (and makes me feel that I have some sort of control in this crazy process). Then comes the pillow full of hair and, undoubtedly, more tears.

Although I've been through this process before (all too recently I might add), this is still very emotional for me. I was hoping to have my curls back for Christmas. I know that won't be the case. Having no hair makes me look and feel like I'm sick and I don't like looking "sick."

And then there's the thought of this week's chemo. I'm not looking forward to this at all. I've had a lot more nausea and vomiting with this kind of chemo. My appetite hasn't been the greatest. I've lost more weight than I'd like these last few weeks. Sleep has been hard to get and I've been feeling more anxious lately.

The three of us (and our Beast) have spent a little time outside this past week. It's been nice to have a change of scenery but some days it's tiring simply thinking of going out. I don't want to imagine what my days would be like if I didn't have my little bundle of energy keeping me going. He is generally always on the move but lately has been spending part of his day snuggled up in my arms or sitting next to me on the couch. Although he has required a bunch of my energy, I cannot imagine going through my days without him. He's also been a little feverish lately so we've been keeping a closer eye on him and have lost some sleep because of it.

Last night we had a dear friend arrive; she'll be spending the week with us. I can guarantee this week will be filled with laughter, tears, a lot of prayer, some great conversations... and foot rubs/reflexology!

Monday morning will be bloodwork and a doctor's appointment. If my bloodwork is ok, Tuesday will bring another dose of chemo. If my side effects are similar to last time, the following week (or two) will be filled with nausea and vomiting.

Ugh (to chemo's side effects) and blessed to spend a week with my dear friend.

66 Years Old

Eleven years ago a younger, cute guy tried to impress me & pick me up by telling me we had the same birthday. With a raise of my eyebrows and a wry smile, I said "prove it." And he whipped out his ID from his wallet which proved what he'd said.

Today I get to turn 66 with him! That young guy who was full of himself (aka my interpreter) has become my best friend, strong support & overall amazing husband and father. He never knew what he signed up for when we got married but here we are six years later, still madly in love, and clinging to God and each other to get through the next day. I am so thankful he chose me and I am so sorry to have put him through what we've been going through this year.

But today has been about celebrating getting older! A great morning playing with my boy. An afternoon visit with a dear friend. A number of surprise knocks on the door bringing flowers, cake & gifts. Almost had a live lobster show up at the door. Instead we went out for a really nice dinner (just the two of us thanks to two good friends babysitting) and just got to spend some quality time together.

Previously, getting older has not been something I've looked forward to. Now each birthday is a celebration (and an accomplishment of sorts). And getting old together sounds wonderful! 

Hoping to celebrate many more birthdays with you!

Struggling & Sunlight

I've struggled this weekend.

My nausea & vomiting hit its peak. Our son is teething. There hasn't been a lot of sound sleep in this household.

Aside from that I'm trying to accept and understand that my cancer is back & growing. Perhaps being naively optimistic, I wanted to be the miracle story of my cancer's inexplicable reaction to chemo. I'd be able to stay on oral meds for a number of years and I'd have a chance to catch my breath from the whirlwind of becoming a mother and receiving a palliative cancer diagnosis.

Ten and a half weeks was what I got. Two weeks were delays in chemo. Four weeks were "recovery." One was preparing for sugery. And three were recovering from surgery.

It doesn't feel fair.

I can see the beams of light shining through the dark clouds. My dad taking care of Matias last week even though mom had just had surgery. Bags of clothes and bikes dropped off for Matias. A turkey dinner that just needed to be put into the oven. Home grown squash & tomatoes. A bag of goodies for my nausea, liver & incisions. A husband who tirelessly serves his family.  These are some of the bright, shining beams that are piercing my darkness. 

I occasionally feel myself withdrawing. Noise, even laughter & giggles, can reduce me to tears. But I wear a smile cause it helps me cope.

I'm not thankful for cancer. I am, however, thankful for the many lessons learned, reminders of blessings, people I've met, stories I've heard, etc.

A while back I watched Matias sit in front of the window as little bits of dust danced in the rays of the morning sunlight. He would open and close his hands trying to grasp the beams of light. In my darker moments, this is how I feel. I can see the light; I just can't quite hold onto it. I want it in my tightly clenched hands. Instead, I just have to sit in the sunlight and receive the warmth of the rays of light.

It's been a tough weekend but I'm coming out of the darkness.

The Simple Things

Sometimes when our circumstances change, we get to appreciate (and grieve the loss of) the simple things. 

Yesterday was my first full shower in 22 days. I'd done the sponge bath thing and washed my hair in the sink... but yesterday I took a gloriously long shower and did it ever feel good! No drains, no bandages. The last time I took a shower I had breasts.  :-)

The three days since chemo have been up and down. My bloodwork came back showing an even more irritated liver (similar to February's values) and my tumour markers had risen decently in one week. That was quite discouraging.

However, my encouraging news about chemo was that it (and bloodwork) is only once every three weeks! For that I am very thankful. I was instructed that the side effects of nausea and vomiting will be stronger. I've had a decent amount of nausea and only a little vomiting. We'll see how that continues.

Trying to mentally prepare myself for losing my hair which will happen in another 11 days or so. Looking forward to not having to shave & trying to decide if I'll feel more comfortable with my baldness this time around.

So I'm learning to appreciate the simple things: grilled cheese sandwiches, snuggles & kisses from our boy, playing in the dirt, nap time, etc. This weekend for me will be about appreciating the simple things.

Playing in the Dirt

Distractions

At the Cancer Agency. Just got my bloodwork done. Xhevat has joined me for our chemo teach and then chemo at 2:00.

Decided it might be a fun distraction to make a cake for the nurses... here's to Round Two!

My impression of a boxing cake.

Round Two

I spoke with my doctor today. The results of my CT showed that my liver is in worse shape. Although the largest lesion is actually smaller than in August, the overall condition of my liver is not as good as it was.

So tomorrow will bring more chemo for me. It will be a combination of two different kinds of chemo with different side effects than last time... probably more nausea/vomiting, definitely hair loss, and then the other fun stuff like possibly heart failure, bleeding & a bigger risk for infections.

While it has been hard to readjust to the idea of chemo, it has been just as hard to "wait" for the last six days for chemo to resume. I'm ready to get on with this.

I've "debuted" my hair at church this past weekend. It will be gone in a few weeks again so I thought this would show it off. I was loved on and prayed for by many. It was one of my most difficult times at church. I could sing, 

"Be my guide, God of Abraham

Lead me by Your hand

You are strong & wise

I want to trust in You and in all I do

bring you honor and praise."

I found it very difficult to sing, "I'm alive and well. Your Spirit lives within me." I'm certainly alive and I know I have His Spirit living in me... but my heart is struggling to be well. 

I had tears streaming down my cheeks for most of the service as I tried to form the words with my voice that are imprinted in my soul.

It's a struggle... but we all have struggles and there are so many others whose struggles are much more difficult and painful. We need each other. I am so blessed to have thousands of people praying for me & cheering me on.

Thank you PCC for holding up my tear stained face and bringing me before our Father when I don't feel like I can take another step.

I'm heading into Round Two of this journey. This past weekend I was sharing with a friend that I just wanted Tuesday to come. Bring it on chemo 'cause we've got some cancer to kill! Her response to my cancer was "Let's get ready to rumble!" So on to Round Two we go!

P.S. I'm thrilled to report that I got my second drain out today. I was told that average length of days for the drain to remain in is 3-5 days. My first drain came out on day 13 and my second (and last) drain came out on day 19! Glad they've served their purpose; happy to move on. Very thankful for a nurse who fit me into her full schedule even with a sick call! And it was even better to find out we used to attend the same church! It's a small world.

Heading into Round Two of Chemo

Readjusting

I've finished my eighth appointment of the week -- four appointments with specialists, four tests/procedures. I don't really want to think about how much we've paid in parking. Friday's last appointment ended with Matias making a ruckus in the waiting room of the Cancer Agency and entertaining many who walked by. He even got to meet the therapy dog again and was all smiles!

I saw some of my chemo nurses and they asked how I was doing. With tears in my eyes, I shared my events of the week and that pending the results of my CT, my oncologist has tentatively booked me in for chemo starting on Tuesday.

These are some of the things that I'm grieving: no hair for Christmas, gonna lose my eyebrows & eyelashes again (although I am looking forward to not having to shave armpits & legs soon), weekly bloodwork & chemo appointments, who knows what will happen with my finger nails, gonna have to push our family trip to Kosova back a little, delay in the completion of my reconstruction, etc.

This is a setback. My response to my last chemo was unusually positive and my response to my oral medications after chemo were unusually negative. And so we continue not knowing what my response will be next... probably new chemo, new side effects, new everything.

This news has hit me really hard. It has been good to have family here as a help & distraction. Helping with math homework is sort of refreshing when thinking of the big picture. Only one more appointment & a phone call with another doctor before chemo. I hope to also get my last drain removed on Monday... and then I will very happily be able to take a shower! It's been too long.

Unpacking my chemo bin.

Potentially Bad News

Waiting for the good news to turn bad is difficult. Unfortunately I haven't had to wait too long to receive some potentially bad news.

I saw my general surgeon this morning. She reviewed my pathology results from my mastectomies. We knew the tumour on my left breast was large and that it had spread to my lymph nodes... no surprises there. What was surprising was that my cancer had also spread to my right breast... multiple microscopic cancerous metasteses. This wasn't what we'd expected to hear but that was just the start of the bad news.

Then off to my oncologist. He hadn't seen the pathology results but reviewed them and delivered potentially worse news. My tumour markers up significantly. Elevated tumour markers are substances in my blood which could suggest my cancer is becoming more active again. Then again, it could simply be a false high reading because of my recent surgery or many other reasons.

My oncologist is concerned.

So he's ordered a bunch of tests and appointments again... bloodwork (done), X-ray (done), Dermatology appointment (my nail is infected yet again... Friday), CT (Friday), ECHO (Saturday)... all added to this week's schedule (I thought I only had one appointment -- with my plastic surgeon -- left for the week).

Depending upon the results of these tests, it could mean:

- no change to anything

- changing my oral medications

- radiation

- surgery

- cancellation of surgery (planned for Oct. 24)

- chemotherapy

I'm overwhelmed and shaken up right now. We've known that bad news would come eventually but I certainly didn't expect it this quickly. I'm torn... wanting to be supportive of my mom as she has her surgery tomorrow but my thoughts keep on coming back to me.

I'm thankful to have had my sister with me today through these appointments. I'm thankful for the spunky boy who charms hospital staff. I'm thankful for my husband who so desperately wants to fix it all. I'm thankful for my nieces and nephews who prepared lunch for me. I'm thankful for supportive parents who hurt with me from far away.

I'm thankful for each of you who have prayed for me. And I want to ask you to keep on praying for me and us. We really need it still and it would be great to have some good news come out of this week's tests.

Through this entire situation I firmly believe that although my circumstances have changed drastically, my God has not. And so no matter how much my circumstances shake me, I am choosing to dig deeper in my trust in Him.

My Chemo Bin

(socks, wigs, hats, etc... do I pack it away or will I need to be using it again soon?)

M-Day (Mastectomy day)

Five days I woke up in the morning with my own breasts. At the end of the day I went to sleep with new ones. This is my story.

Nerves and nightmares had gotten the better of me the week prior to surgery so I'd helped myself sleep with a little medication. If it hadn't been enough to deal with the thought of loosing my breasts, leaving my baby in the care of my family topped everything off.

My loving husband fixed me a coffee that I couldn't drink. I sat and sort of pouted while he had his breakfast. I was allowed clear fluids... so I had to live vicariously through that glass of juice. The rest of my morning consisted of a long shower (it would be a while until I could scrub down again), packing my bag (if there were complications and I ended up in hospital, I wanted a few comfort items) and tying up loose ends.

At 10:30, we arrived at JPOC with my photo ID/health card in hand. I was told to bring it so that they could verify my identity. My irrational mind said,"Right... cause lots of other young ladies would want to steal my identity and have their breasts chopped off!"

I changed into the bag of hospital blues and greens that I was given making sure to do up the gowns in the appropriate directions (again... that wouldn't matter once I was on the table) and sat and waited for the nurse to call my name.

Having mastectomies and a stage IV diagnosis has given me a few perks. One of them was that I didn't have to return to the waiting room with the others in their hospital blues & greens; instead I was allowed to remain in my curtained off lounge chair area.

My IV was started by a special nurse and one by one I got to see the people who would be present in the OR. 

- The OR nurse... yup, I'm still Krista. Yes, that's my signature. Yes, that's the surgery I'm having done. 

- My plastic surgeon (never thought I'd have a plastic surgeon)... I sat still while he drew on my chest with a purple marker and took a pre-surgery photo. Tried a little humour but it didn't work out so well. P.S. It's a little awkward to have a man draw on your bare chest and take photos while your husband sits and watches.

- My general surgeon... she was the one who diagnosed me and has been an advocate in being able to have this surgery. Took another look at the purple marker lines and extended them a bit with her green marker.

- Anesthesiologist: the guy who was going to give me the good drugs so that I would be breathing but not waking up through the procedure.

And when all of this was finished, back to the OR nurse. I gave my husband a chance to say goodbye, a quick hug and kiss for me, and a long walk past the Restricted Access signs to the "Penthouse Suite" OR according to the nurse -- a beautifully, big expanse of a room with lots of windows and natural light and bustling people in their OR greens. I chose not to process big windows + breast surgery at that time.

Following instructions, I lay down on the table and made sure my two requests were voiced prior to going to sleep:

1. To my Anesthesiologist: please tape my eyes shut carefully... it's been a while since my eyelashes have been this full (even if they're short) and I'd hate to have them torn off carelessly with your pieces of tape.

2. To the OR nurse: can you please remind the General Surgeon to take a picture of my tumour? I don't want a picture of my breasts in a bowl. I just want to see the tumour that has tried to kill me.

A couple injections later and I'm asleep.

I wake up in the recovery room in pain. After a little pain medication and a quick clean up from the pink soap, I'm wheeled back to where I started my day. This time instead of a comfy chair I'm on a hard gurney.

My memory at this point isn't quite as clear as pre-op. I was very thankful to have my husband (one very relieved man) by my side. He'd been keeping people updated and waiting anxiously to see me. He could finally see I was ok... sore, but ok.

When I'm awake enough to know a little of what was going on I get a chance to look down. Under the warmed blankets is a pinkish, purplish binder -- basically a corset or really tight tube top enclosed by Velcro. Underneath my binder I have bandages which the nurses occasionally are checking on -- hi stranger! Want to take a look at my cleavage no longer? And underneath the bandages I have two drains which helps my body not have to deal with blood or fluids that would otherwise just gather at my wound site. I also have tissue expander/implants that have replaced where my breast tissue and tumour once were.

My goal at that moment was simple: to have no complicatons & get home in time for Survivor. While this may seem to be completely silly, that was my goal.

After some very uncomfortable moments, a failed attempt to get dressed and having my drains emptied a couple times, Xhevat finally gets me into the wheelchair to take me home. A quick stop at the doors to surgical daycare and some vomiting didn't stop me from achieving my goal. And after some more vomiting, I settled into my couch to watch my TV show. My body had other plans & I fell asleep.

I've had five days of recovering. My binder is still on & drains are still in. I had pain but was thankful for pain meds. And on that note, I apparently would not be a good junkie. I have learned that my body likes to be nauseated and vomit from even the weaker narcotics. After 48hrs of not tolerating much by mouth, I decide to switch to trusty over-the-counter products. My nausea goes away and I'm able to regain an appetite (fried rice was my craving Sat night). 

Another perk of being a stage IV is that a home care nurse came to check my wounds yesterday. And I had a chance to see myself without my binder on. It was a little emotional but didn't look as bad as I'd thought.

I've learned that my emotions are much like my chest right now. Wounded. Bruised. Tender. Numb. Needing an emotional binder to be supported & held together. For the first time in over a year, I have no large cancerous tumour on my breast. I am thrilled by this. But I have been hurt in the process and its going to take some time for my emotions to heal.

In my comfy chair before surgery

What do you bring to a friend who's just had mastectomies? A boob cake, of course! (I have the best friends!)

Like Daughter, Like Mother

Had a decent night. Up frequently but stayed on top of pain meds. Have vomited a number of times & having difficulty trying to keep anything down. Managed a walk to the mailbox.

I've been asking for prayer for my family this past week. Last week my mom found out that she has breast cancer as well. It was caught early but will still require some difficult decisions to be made about treatment.

I have an amazing family that has been carrying me through these last seven months. We will continue to so for my mom but really could use your prayers as well.

Thanks!

The ladies of my family (except one niece)

Home

Surgery done. Just got home. In a decent amount of pain. Resting...

Staff were great &  have an amazing husband!

My new "bed" for the next while.

Wednesday's Surgery

My surgery is scheduled for Wednesday at 12:30 (te Merkuren ne oren 2130 ne Kosove) at JPOC. I have to be there a couple hours before the surgery to get prepped.

Even though it is quite an extensive surgery (so I'm told anyway), it is done on an outpatient basis. If there are no complications, I'll be back at home in the evening. If there are complications, I'll be admitted to SMH.

My recliner is ready to be my "home" for the next few days. I have button up pjs and shirts as it will be difficult to lift my arms. I'm going through my plethora of medications to find my pain & nausea pills (although I'm not sure if I'll be able to open the child safety caps). I hope that wearing my chemo socks for surgery and recovery won't spoil the spirit of my chemo socks (I think the originator of the sock idea would approve).

I'd appreciate your continued prayers for:

- me: as I go through this next chapter of treatment and recovery

- Xhevat: as he takes care of me, works, is away from his son and is carrying a heavy burden as a husband and father

- Matias: as he's away from home & parents (and loving his time with his cousins, aunt & uncle, and grandparents)

- Family in Kelowna & Kosova: who are far away, concerned for us and hurting with us

- Volunteers, janitors, instrument cleaners, unit clerks, nurses, surgeons & others we'll be encountering tomorrow: each of these people will make an impact in my surgery & recovery... but each of these people have joys and concerns going on in their lives as well. Please join me in praying for what is on their hearts and minds.