Monday 29 July 2013

No News is Good News

I've been "silent" online for the last little bit. Life has been full.

An eleven month old boy who is walking & climbing walls (literally). A visit from my parents for the last week. Dinner with my cousin and her family. My bone strengthening infusion. And completing six cycles (24 doses) of chemo!

Lots of things happening. As I've shared before, the protocol for my kind of treatment is 2-6 cycles... but as I've continued to respond and my side effects have been very tolerable, we're planning on continuing more chemo. A CT in another three weeks will let me know what's going on inside.

Back in February when I was diagnosed, my liver was extremely unhappy. One of the ways my liver showed this was by my bloodwork and more specifically my liver enzymes. One of my enzymes was over four times the normal limit; another was over eight times normal. Slowly they have been trending downward.

This past Friday, Xhevat and I had a little celebration when I got the printout of my bloodwork and all of my liver enzymes were within normal limits. And a cheer went up from my amazing nurses as well!

We have so much to be thankful for!

Medically, this month holds a few doctors' appointments, bloodwork & chemo, bone strengthening infusion and a CT.

Thanks to some "extra" weeks of parental leave, we are blessed to be able to have some good family time planned for this next month... time to spend together and make memories. And at the end of our time together, we get to celebrate Matias' first birthday with family & friends!

So thankful for:
- family & family time
- normal liver enzymes
- cancer killing chemo
- nurses and doctors who go beyond treating my physical needs
- prayer & those who pray for us
- Xhevat & Matias (and even JR most days)


What I Have Survived Since Feb 12
(in 61 Appointments)

IVs (successful) x 41
IVs (unsuccessful) x 7
Bloodwork x 38
Biopsies x 12 (I think)

Chemo x 24
Bone strengthening infusion x 6

MRI x 1
CT x 3
Ultrasound x1
Xray x 3

Parking Ticket x almost one

Thursday 18 July 2013

Crawl or Walk

Every day we make choices.

Coffee or water. Cereal or bagel. Shower or pjs. Smile or frown. Crawl or walk.

Yesterday our son decided that he wanted to walk. He'd taken his first steps a while ago but decided that his preferred method of transportation was hands and knees... until yesterday.

With his legs bowed, bottom sticking out and his right hand reaching forward, he tentatively let go of the couch with his left hand and walked to the other couch. Realizing that he safely (and rather quickly) went from one couch to the other, he did it again but this time he aimed for the wide expanse toward the kitchen. Overcome by everything he plopped down on his diaper cushioned bottom. And within seconds he was again up and getting places on his two feet. All that the two of us parents could do was watch with glowing grins of delight and pride. Occasionally we'd clap our hands and exclaim, "Yeah!"  And our boy would look back at us, flap his arms in excitement, squeal with delight, and clap his hands.

On this journey there are many people that are making decisions for or about me... doctors, nurses, government workers, insurance people, friends, family, etc. Some of these decisions are quite significant to me and I have zero control over the outcome.

At times I am unaware of the decisions that are being made. Today I'm painfully aware of a couple of the decisions/outcomes that are in the works. I can plan for possible outcomes and prepare arguments for the decisions that I don't like. I can worry and fret and doubt and fear. 

Like my son's decision to walk, I'm taking some steps of faith today. I don't want to waste my energy or joy crawling. I don't want to be consumed by the "what ifs." I want to enjoy today with my family & friends and live with hope and trust. My mind sometimes wanders and my feet falter and I end up sitting in my despair. But like my son, I determinedly get back up and continue to take these awkward first steps until the fears of my heart are relinquished and I'm able to walk confidently in peace.

(And I can just imagine God in all of his bigness and majesty getting down to my level and cheering for me. And I look back at Him with wide eyes in absolute amazement of what was just accomplished. And with joy and excitement and pride in His eyes, He continues to watch my every step and encourage me.)

Walking!

Saturday 13 July 2013

You Know Who You Are

This past Thursday four friends from work came by to have breakfast with me. Can I just say that Solly's bagels and cinnamon buns are delicious! Thank you for such a yummy delivery!

They also brought an envelope with the proceeds of selling pins at work for "Team Krista." I was told stories of nurses, physicians, RTs, housekeepers, care aides, and more who had given -- most knew me, some didn't. All were incredibly generous!

I don't know each of you who gave... but you know who you are. From the bottom of my heart, thank you. I feel blessed, overwhelmed, loved, supported, and at peace. For those of you who know me, you can picture me with the big grin on my face and my eyes sparkling with joy.

Thank you friends!

Overwhelmingly Blessed

Tuesday 9 July 2013

Why I've Chosen Chemo

"You have cancer."

No one ever wants to hear those words. They're devastating and in an instant life changes. But that's only really the beginning. Countless decisions need to be made after you receive and process this news. Sometimes you're able to take your time and weigh all of your options... and sometimes you just have to act.

When I was taken into the quiet room and told I more than likely had cancer, I had 48 hours to process the news. Between my back pain and day of tests (which aggravated my back pain even more) I was in a great deal of pain. I coped and clung to my family for those two days. Telling my sister and parents, who were all far away, was brutal. And at the end of those two days came a call which confirmed what the images had suggested.

Then came a visit with my oncologist. His recommendation was chemotherapy and that I start the following day. There was no guarantee to that my cancer would respond to the chemotherapy but he felt that my situation was urgent enough that I should start treatment the following morning.

Twenty-one weeks later & I have less cancer than when I started.

So why did I choose chemo? Given my profession, I definitely lean toward evidence based treatment. I prefer knowing that the treatment protocol has been tested and tweaked and tested again. The chemo that I'm on has been around for a number of years and its effectiveness and side effects are well documented. Almost always, side effects suck (except the ones which make shaving necessary much less frequently)... but if it's working, then it's worth it and I need to see the bigger picture.

There are many other alternative treatment options available as well. I certainly believe that a healthy lifestyle is important. I know that I could be eating more fruits and vegetables and exercising more regularly. And there are lots of other nutrition plans, supplements, etc. that are available which might be beneficial. Acupuncture or acupressure are also options. And the list goes on and on.

I have received numerous suggestions of diet, supplement and lifestyle changes that I could make in order to improve my outcome. These suggestions have come from people that love and care for me an want the best for me. While I may not have responsed to each of you individually, I have looked into most of the suggestions to see how they work and if incorporating other forms of treatments could be beneficial. I've even tried some forms of treatment I have never tried before!

At the end of the day, we each make decisions that we feel would be most beneficial to our own situation. For me, prayer is essential as my faith is the core of my being. Thank you to each one of you who have joined me in prayer. Even though we were unsure if my cancer would be responsive to this type of chemo, I also chose chemotherapy. Fortunately I haven't had too many horrible side effects. Some of them are cumulative and so the longer I'm on chemo, the more side effects I will experience... and the less cancer I'll have. I'm trying to make some dietary changes (hence leafy green vegetables in my fridge) and with the encouragement and support of my husband, I've walked more frequently this year than I have in years!

So for better or worse, that's where I'm at. Things may change as time goes on... but this is where I'm at today.

P.S. If you feel led to share information about other treatment options, please continue to bring them to my attention. I believe that they come from caring hearts and I will to listen to your suggestions.


How I feel about my cancer diagnosis most days.

Sunday 7 July 2013

Six Years Ago

Sleep hadn't come easily. I woke up early and had my shower while the power and water were on. A quick trip to the city to get my hair done and then back to my apartment to finish getting ready. My aunt and my mom had spent hours sewing. My sister and I improvised when the cake didn't turn out as planned. My dad was going to be my chauffeur. Thirteen of my family and friends had come a long way to witness this day & celebrate!

The sun was shining intensely in the cloudless sky. The shade of the trees and the slight breeze brought some relief. We started late but it didn't matter to me... the only thing that mattered to me was that I was going to be his.

Walking toward him, I tripped a little but was steadied by my dad. Then the Word, supper and promises were shared in each other's languages. And the words were declared (oops we had to wait for it to be said in English as well) that we were husband and wife.

The Kiss. Joy. Relief. Anticipation. Blessed. The Unknown. Confidence in knowing that we would be beside each other through life's journey.

These last six years have brought us joys and challenges of many kinds: family emergencies, a job that didn't pay, a big move, new jobs, a new culture, a house, a dog, the miracle of our boy, cancer.

I have been honored to be beside my best friend through it all. He is the rock to my emotional storms. His love is unwavering. He sacrifices daily to take care of us.

These last few months have continued affirm the vows we made. Together we've received devastating news. He has brought me to God. He has cared for our son day and night. He has held my hand, taken my temperature, given me medication, brought me food, supported me when I had difficulty moving. He helped me shave my locks & pick out new curls. He has made me feel beautiful no matter how I look. With God's strength, he is leading our family through these difficult days.

I am blessed to be your wife and I'm so thankful to have you as my husband. I can't imagine life without you. Happy anniversary my love.




Thursday 4 July 2013

Pity Party

I spent the end of last week and the beginning of this week having a pity party.  The weather was HOT (it got up to 29.5 degrees inside our house) and I was trying to wrap my head around another twelve weeks of chemo.

Logically if the chemo is working and I'm not having many side effects, more chemo is fantastic... but my heart was feeling differently. It felt like I was just shy of finishing a marathon and another 8 miles was added to the course. With an additional 8 weeks (12 more weeks total), more than likely I will lose the rest of my eyelashes & eyebrows and maybe a finger nail or two with the way things are looking, it will be fall before I'm done, I won't have hair for Christmas, and I just want a Friday without steroids, Benadryl or toxic infusions!

Things hit a low when our family was going to go out and I couldn't fit into any of my shorts or capris (thank you steroids, fatigue, chemo side effects, etc for each contributing to my weight gain).

But then I got a call from a nurse asking if  I wanted to add another appointment to my schedule. Not knowing what had been going on through my weekend, the nurse reminded me of how well I am responding and that there are more treatment options available now than when we started.

I tell myself that I need to be thankful and I start thinking of things to be thankful for... thankful for life and breath and purpose... thankful I'm doing so well... thankful for less cancer... thankful for options... thankful for the support of my husband, family and friends... thankful for a little boy who repeated "Mama" for the first time today... thankful for the warm, sunny days... thankful for the cooling breeze from the fan... thankful for retail therapy (and new capris & shorts)... thankful for this moment... thankful for God.

"All we have to decide is what to do with the time that is given us." J. R. R. Tolkien 


My boy is thankful that he can fit two soothers in his mouth when he wakes up from his nap