Saturday, 19 July 2014

Ups and Downs or Downs and Ups

It's been a down & up week. My chemo side effects have carried into my "week off" and just are a bother. And it made me start to wonder whether the chemo was working or not and I started to think of what would be the next steps if it wasn't working and what I'd be willing to do then.

And slowly I spiral downward.

BUT...

I had my bloodwork and doctor's appointment at the end of this week. And I received all good news. My tumour markers are down (that's a good thing) and almost all of my other bloodwork is normal. Other than the tumour markers, it would be difficult to guess that I'm as "sick" as I am from my bloodwork.

I've been hesitant to share my good news (no I'm not pregnant) in case things change. I've mentioned before about the loss of sensation to parts of the lower half of my body. Just after getting radiation and starting this cycle of chemo, my feet, the backs of my legs and my butt started itching. Sometimes itching can mean nerve healing (and it's really annoying because there's nothing you can do to relieve the itching
). I anxiously waited to see if my nerves were healing and I'm really happy to say that I can now feel most of my right foot, a decent part of my left foot, and up both of the backs of my legs including my butt. Now I normally wouldn't share about my butt except for the fact that I found it ironic to have my feeling return in my butt just in time to fall through the chair a couple weeks ago. My butt felt every bit of hitting the concrete (if only it happened when my butt was numb!).

I also had an appointment with a homecare nurse earlier in the week. I have home visits because I'm the palliative care program. It was difficult to discuss end of life preferences like if I want to have CPR performed or if I had a preference to die at home or in the hospital. These are not "new" questions or things that we as a family haven't thought of or discussed as a family. I've had discussions about end of life decisions with my patient's families but it just seems so surreal to be discussing these things about me... especially when I'm feeling so well.

While heaven is where I long to be, I'm struggling with the pain and suffering that will be left behind. And my heart aches for my family and friends. I know that God is more than enough for them but it is just so painful to be making decisions and plans for what will be perhaps the most painful experience in my family's life.

So that's my week! Lots of ups and downs. Daily naps. More time with my husband and boy. A few appointments. Making a video for my family reunion I wish I could be attending. Receiving good news from my oncologist. And dealing with end of life decisions.

That's enough for one week. I'm done.


What I Have Survived Since Feb 12, 2013
(in 188 Appointments)

IVs (successful) x 69
Bloodwork (successful) x 73
IVs or Bloodwork (unsuccessful) x 18
Biopsies x 13 (I think)

Chemo x 13 cycles including:
IV Chemo x 29 doses
Oral Chemo x 224 pills

Bone strengthening infusions x 18
Injections x 9
Brain radiation x 5
Other radiation x 2
Tattoos x 6

MRI x 2
CT x 11
Ultrasound x 3
Xray x 6
ECHO x 1
Surgery x 2
Minor surgery x 1

Days in hospital x 9

Parking Ticket x 1 (which was given incorrectly) & almost another one

A new way to ride in the cart... at least he has his seatbelt on!

A new way to eat goldfish crackers... look mom, no hands (he was sucking them up)!

Tuesday, 15 July 2014

Rest & A Party

I didn't know how stressed my body was. That's what my husband said as we were driving back to pick up our boy. There was no secret location... just a relaxing place called Sparkling Hill near Vernon. I had been there last year to rest and write some cards to my family. As soon as I got there, I knew I wanted to come back with Xhevat.

It was strange (a good kind of strange) to be only the two of us. We ate dinner with no thrown food or food that was threatened to be thrown (Zabb in Kelowna has amazing Thai food). Then a quick drive out to what seems like the middle of nowhere and we pulled up to the resort. Xhevat wasn't so sure about the valet parking but his uncertainties were quickly forgotten as we walked around the beautiful hotel.

Sparkling Hill has Swarovski crystals everywhere... including in lights, in a "fireplace" with coloured lights, reflecting on the ceiling, etc. and this is just all in your room. Then comes the spa. This time I/we chose not to do any of the "extras" (like massages or pedicures) but just enjoy the pools, hot tub and a dozen spa rooms that varied in scent, humidity & temperature. It was just incredibly relaxing and refreshing.

I had no revelations or poignant moments... just pure enjoyment of spending time with my husband with no schedules or interruptions.

And then we returned to Kelowna, picked up our boy (who I don't think noticed that we had been gone for two days and had thoroughly enjoyed being spoiled by his grandparents) and went to my sister's where the preparations for the party began.

My sister & I had not prepped or organized a party together. We each had our lists and items we'd prepared ahead of time and last minute preparations that needed to be completed. It was incredibly fun to work together with her and her kids who all helped prep, cook, clean, babysit, etc. We each did whatever was needed. And honestly, we had a blast even before the party started! 

My sister has said that she has had sympathy pains (like your husband gets when you're pregnant many) from my chemo/cancer this past year. I got to experience that in reverse when she got some whipped cream on her finger and I instinctively licked my own finger to get rid of the whipped cream (it didn't work)!

Then a few hours later mom & dad and their friends arrived! I think throughout the night there were just over sixty people that came. It was wonderful celebrating my parents' 70th birthdays! My parents, especially my mom, is usually hosting the parties and celebrating others and I really enjoyed the role reversal. It was also great meeting some of my parents' friends who've been praying for and supporting our family through our challenges. A very special evening and a very special week indeed!

One of the Swarovski crystal chandeliers

Enjoying the view with floor to ceiling windows in our room

Gorgeous sunsets

And in the daytime...

And then there was the party... a 70 candle birthday card (it was too dangerous lighting them all so we put them on a card)

Some of my Parents' Friends

Some of the Food

More Friends

Monday, 7 July 2014

Packing

I somehow need to organize and pack three suitcases tonight. Mine, Matias', and party stuff... you thought I was going to say Xhevat's, didn't you? Nope. He is more than capable of packing his own suitcase.

This week Xhevat and I will celebrate our seventh anniversary. It's hard to believe all that has happened in these last seven years. It hasn't been an easy first seven years of marriage but I am honoured that he chose me and I have the privilege of being called his wife. To celebrate, we will be dropping off our boy with family and getting a little vacation with just the two of us... I am already so thankful for our time we will have together.

And then later this week, we'll be celebrating mom's and dad's 70th birthday with their friends! One of my parents has already turned 70 and the other one will turn 70 next month (I won't divulge who is older/younger). So far including our family, we have just over fifty people coming. It's in our genes to love celebrating and hosting. So the baking has begun! The aromas coming from the oven are delicious! Inside our house is 28.5 degrees Celsius (that's 83 degrees Fahrenheit) from all of the baking... and every window is open! It's a small price to pay for home baking.

Other than that, not much new on this end. Chemo continues (I'm half way through the chemo part of cycle 2). I'm doing decently well with the side effects so far. The top two side effects of this chemo are diarrhea (you know you wanted to know that) and troubles with the skin of your hands and feet (redness, pain, dryness, cracking, etc). The dryness also affects the rest of my skin and so I use 15 pumps of a heavy duty lotion when I get out of the shower to maintain some sort of skin hydration. And then I add additional lotion as needed to hands and feet throughout the day. Sometimes I even need to wear socks or flip flops inside to soften the impact of normal walking in the house. But I'm doing well (I think). The side effects from radiation have gone ok as well. I've had some site tenderness and discomfort but generally all has been well. No increased pain, no skin reactions/burns, maybe a little bit of extra fatigue, but doing well overall. I'm feeling stronger overall but still try and get a daily nap.

I'll be purposefully out of touch for the next few days. I want to engage as fully as possible with my husband and family. Enjoy the break from my blog and I'll enjoy making memories with my husband and family!

P.S. Just to add a little humour to this entry... Xhevat tried to tickle my foot while I was lying down on the couch. Haha! The joke's on him. I don't have feeling on that part of my foot! 

Seven years ago. If I knew then all that we would have gone through these last seven years, I'd still say "I do." I can't imagine life without you Xhevat.

Tuesday, 1 July 2014

Happy Birthday Canada

Today I'm thankful for my country's medical system. It's certainly not perfect and it has made mistakes that have affected my life greatly... but when those mistakes were discovered, people moved. And they moved quickly! From initial assessment (including MRI, ultrasounds, biopsies, CT, X-ray, and bloodwork) to receiving pathology results was only 50 hours and I met my oncologist 3 hours later. Then it was only 19 hours (a sleepless night) until I started chemo.

If you've been following my blog, you know how much/many chemo, bloodwork, CTs, MRIs, radiation, nights of hospitalization, doctor's appointments, etc. I've had. With my immediate family's resources, we could not have afforded this treatment. Instead we've ended up paying for parking and some extra medications. We are grateful that we only have these as our bills... and that I haven had to buy the $60 mouthwash yet.

So Canada, for all of the taxes, potholes, speed bumps, parking tickets, red tape, construction, etc., I gladly thank you because without the hundreds of thousands of dollars you have spent on my life these last 17 months, I wouldn't be here celebrating with you. Thank you BC & Canada and Happy Birthday Canada!

Out Celebrating Today

A Fall That Was NOT My Fault:
Yesterday the fabric on our zero gravity chair ripped sending me (and more specifically my butt) plunging downward onto the concrete below. My face was spared this time, but my back, butt and elbows took the brunt of my fall. I might look really awkward in the picture and it's because after getting over the shock and then laughing so hard, I had to contemplate how to get out. I pulled one leg into the ripped frame (at which point I decided we had to document this moment with a picture) and somehow managed to contort my other leg to get it inside the frame. Xhevat then freed from my zero gravity jail by lifting it's twisted frame drove my head. Just another adventure in the life of the Krasniqi's! And you are certainly are allowed to laugh and enjoy this unfortunate event at my expense. :-)

Saturday, 28 June 2014

Little Accomplishments

It's been a tough road since Easter and my brain mets diagnosis. Physically it's been especially challenging but I have made improvements. Some of these limitations have been caused by the actual tumours, some have been caused by the radiation, some have been caused by the steroids, and some have not been able to be explained. In their own way, each may have cause my physical challenges, but also each could be the reason why I've improved. I can always blame God for these improvements as well. :-)

Below are some changes that have happened physically... I like to call them my little accomplishments.

- speaking without sounding like I'm drunk
- going to the bathroom by myself (and not needing assistance to pull down my pants or get back up to standing)
- while we're on the bathroom theme, successfully squatting while using a public restroom (and avoiding all those icky toilet germs!)
- not needing to sit down when I take a shower... I have the power and endurance to stand!
- standing up from my bed without having to push off with my hands and repositioning myself in bed with greater ease
- getting tattooed (and only telling my husband & parents afterward... and they didn't even disapprove!)
- getting into a car, van or SUV and not having to lift my legs into the vehicle with my hands
- walking up the stairs at the end of the day just holding onto the railings for extra security and not to needing to pull my body up another step (update: two nights ago for the first time I walked up the stairs without holding on to anything... this is me taking chances and living on the wild side)
- I even recently "stepped" over the locked baby gate without going through the gate itself
- meals... I love cooking and can still cook... It just takes me a little longer to move around (but I'm certainly not quite up to housecleaning or changing poopy diapers... I gotta use my cancer card for something, right? :-)
- picking up my boy and playing with him (although I'm really cautious about this and still get other people to do this the majority of the time... especially if there are stairs involved)
- I can't quite get off my steroids yet but I'm almost there (and am really hoping to be able to get off them if my brain can handle it)
- I've been getting better sleep lately (especially when my boy sleeps). After more than 14 weeks of a headache, steroids and just the stress of everything, it is good to go to sleep at night and wake up at a reasonable hour in the morning. I'm certainly grateful for better rest.

While I've certainly had some increased strength and energy physically, it's been hard in other ways. Xhevat and I woke up early today to watch his sister's wedding on Skype. We were supposed to have been there but our plans had to change and we had to go earlier. It's tough not being with family today.

Thursday was a good day. My boy called me Mama, it does not matter that it was raining or that I was wearing a toque and am wrapped up in a blanket. As well, Xhevat has started a month of Compassionate Leave. It will be good to make some memories while I'm still feeling this well.



One of my six tattoos: The person tattooing me exclaimed midway through tattooing me, "Wow you tattoo really easily." What's that supposed to mean? Are my blue dots bigger than normal? Maybe they're just darker. I'll just take it as a compliment cause I don't know any better. And I'll definitely remember to tell my next tattoo artist before they start.

Wednesday, 25 June 2014

I've Missed You

I miss my church family. I haven't been at our home church for the last couple weeks as I was in Kelowna. When I was last there, I was getting out of the building as quickly as I could with tears of shame and embarrassment running down my cheeks.

Many of you have had really different experiences of church. For some of you, it's a Christmas and Easter thing. For others, you might never have entered the door just because. Some of you hold different beliefs and going to church would be unnecessary to you. And others of you may have been to church but have been hurt and carry deep wounds by the people of the church.

I'd like to share a little of my experience of church as an adult. The building is often referred to as the church whereas it really is the group of people that join together as they journey and grow in their relationship with God (and I'll admit that I sometimes use both definitions). I've been a part of my church since '97. I started attending this particular church because my roommate knew people and I had a vehicle so I was the driver. And I'm still going seventeen years later (yes, I'm that old).

Our church first met in a school gymnasium and I helped lead a youth drama team in the hallways of the school. A few years later we moved into an old, converted mushroom factory in the industrial area of Cloverdale... and that is where we still meet today. This is not your typical church.

Our church (the people) is not perfect. We are a group of people who make mistakes but are striving to be more like Jesus every day. Sometimes our mistakes are small and go unnoticed. Sometimes our mistakes are big and the ramifications of those mistakes have caused great division in our church. Going through those great moments of hurt has caused both division and unity in our church. And I believe that it has been up to the individual (whether they stayed at the church or left) if they chose to grow in their relationship with God or allowed human mistakes to separate them from God and the church. And if people found another place to grow in God, that is good. Personally, my greatest heart wounds have come from people who have been a part of the church and I know that I have caused deep hurts to those within the church. Again, we're not perfect.

Since getting diagnosed with cancer, my relationship with my church has changed. I was involved in my church before my diagnosis (my focus was being on a team that looks at serving the needs of others and sharing about Jesus both within our community and around the world). But instead of being the one leading and serving, my church was now doing this for me. We had meals brought to our home, rides to appointments, babysitting for Matias, special gifts, gift baskets, things dropped off at the door, and monetary gifts. Our church even took a special offering to cover our trip to Kosova last month (we had intended on paying for this ourselves last year when we'd first planned on taking Matias to Kosova but our church wanted to bless on us by helping us out this way... this has been especially humbling).

More importantly than any of this, our church has supported us through prayer & encouragement. I cannot tell you the number of times when I've been feeling low, lonely or was starting to spiral downward and I received an email, phone call or visit that just made my day. Other days I had people who would cry and mourn with me and allow me to be sad. And all through this journey we have had people supporting us and carrying us when we just didn't have the strength.

I've said it before and I'll say it again, going to Sunday's church service is the hardest time of the week for me. I feel most vulnerable there. When I'm on chemo (like now), there are a lot of germs that Xhevat, Matias and I can be exposed to. But that's not the vulnerability that's the most difficult. Between the worship songs (which when you really listen to the words often talk about difficulties, dying, and heaven), the message or sermon (which often just hits me to the core of what I want to be learning and being but am struggling to become), and the people (who just love us so much and hurt with us greatly), I feel both incredibly raw and gently soothed.

We usually try to sit at or close to the back of the church. It is a place that you can escape less noticed if needed. It's also a place that you're not noticed as much when you're crying (tissues are always kept in my purse). The second to last row is actually better than the last row. It's less likely that people can hug or touch you from behind when you're trying to stay away from unnecessary germs (because you don't have an immune system) or just need a place to be present but also at times to hide a little.

Now that you know my seating strategy for the church service, I want to let you know that the people that sit in those seats around me have amazed and overwhelmed me. They have come around our family with love, prayers and concern. We have made new friends by sitting at the back of the church. They've asked some tough questions and laughed with us. They've been with me when I've been strong and when I've fallen flat on my face (I can laugh about it now).

I cannot thank you enough Pacific Community Church. Thank you for not being perfect because I fit in much better that way. Thank you for accepting me, loving me, serving me and for being the hands and feet of Jesus in my life. I'm looking forward to walking this journey with you & growing in our relationships with God with you. See you on Sunday! I've missed you.

www.pacificcommunity.ca

Sunday, 22 June 2014

22 Months

My boy is twenty-two months old and has he ever changed from the little six and a half pound boy I first met. The evening I first met him he was placed on my chest and Xhevat and I were overwhelmed with joy and amazement by this little human being who was entrusted to us. Not too much later we were surprised by a knock on the hospital room door and in walked my niece then my sister and then my mom. They had driven down from Kelowna to surprise us when they heard I was in labour. They were there when Xhevat first held our son. The pride, joy and smile that this little boy brought to his daddy the first time he held him still brings tears to my eyes.

What a different boy he is now! He's almost twenty-four pounds of rough and tumble energy! He prefers to run rather than walk or sit still. He loves to be the center of attention and whether it is a room full of family or crowds on bleachers at a softball game, he will make sure everyone is cheering and clapping their hands.

He can say mama and daddy but he still does not call us those (or any other) names. He loves to imitate in gibberish & can belt out anything from grandpa's classical music to singing along with the radio to Disney's Frozen score or the Little Einstein's theme song. While he may not say a lot of words or sentences, he knows the alphabet, colours, shapes and can count to ten. This last week he's learned the sounds that the letters of the alphabet make. Wherever he goes, he will point out what he knows. If we're grocery shopping, he'll pick out letters or numbers on signage or packaging. Today at McDonald's he saw the golden arches and kept on saying "mmmm" (the sound that the letter "m" makes).

He will run and play and laugh until he's exhausted. He doesn't mind getting dirty or splashing in his kiddie water toy. When he gets to the playground, he loves to climb as high as he can and would walk off a high edge without fear (more than a little scary for his mama) but yet will be totally enraptured by a pebble or twig. He also loved buckling his belts (stroller, high chair, car seat) and we are thankful he has not yet learned how to unbuckle his belts.

And you never know until you put him to bed whether it will be a easy or difficult. Some nights he goes to sleep with no difficulties and other nights he wails and thrashes until you wonder whether he'll end up injuring himself. My sister can attest to being awakened a dozen times one night and the next night he sleeps through the night (other than the occasional mid-sleep outpouring of gibberish).

He's gotten a little "touchier" lately (which I'm really enjoying). Now sometimes being touchier involves actually being still and cuddling in next to me but much of the time it just involves being in closer proximity to me. This might mean he's getting tickled (which he loves and after he escapes, he comes back for more) or it might mean he's climbing and rolling all over me while I'm lying on the couch or it might mean that in his energetic state that he just rams his little body into mine (I bruise more easily than him right now).

With his new knowledge of his numbers and letters, I've been able to help him learn his letter sounds and more using flashcards. This is definitely something I can do and is well within my energy levels and physical capabilities. And most of the time, he loves it... and so do I!

He is oblivious to what is going on in my life and gives me such absolute joy, sleepless nights, pure love, too many diapers, innocence, pain & bruises (when he gets upset, sometimes he thrashes his body... just this week he was upset and back arching off the netting of both sides of the pack n play... there was no part of his body that was touching the bottom of the pack n play), and just an amazing reason to get up each morning to see his eyes light up when he sees me and see his smile and hear his squeal. God is good. 

I am so glad that I'm able to do this. And I wonder if perhaps God is allowing some of these neurons to fire in his brain at this time in order that I can see it and be a part of it. Whatever the case, I'm thankful. I'm thankful to be a part of my boy's life today and I'm thankful that I have gotten an opportunity to be as involved in his life as I have. I'm so thankful to have had him in my life every day of these last twenty-two months and pray that I have many more months (and years) of making more memories with my boy and his daddy.

P.S. My little one & I have arrived back at home after our week at my sister's. It is good to have the three of us back together (we've missed our husband/daddy). Had a wonderful & restful time there with family (I know my sister will miss us but not the poopy diapers or being awakened multiple times at night)! Made some special memories... dinners at my parents, seeing two sets of my aunts and uncles, watching my boy play with his cousins, homeschooling, soccer games (niece's, nephew's and World Cup), frozen yogurt, family movie night (the Lego movie), lunch with just my sister, conversations... I could go on and on. It was a special time for which I'm thankful.

Tomorrow I have radiation on my spine (to decrease some of my discomfort) and bloodwork. Tuesday I see my oncologist and Wednesday, if all things go as planned I start Round 3, Cycle 2 of chemo. Praying for not too many side effects from radiation, that my bloodwork will show that my chemo is working, that my neutrophils would be high enough to get chemo, for regaining more physical strength, and that my symptoms would be stable so that I'd be able to get off my steroids. This last week has been good & I'm hopeful that this week will be just as good.

Meeting him for the first time

A selfie taken by my boy these days