Time with Family & Friends

It's been a busy couple of weeks here. We enjoyed five days with my family at Sun Peaks. Because it was often rainy during our time there, we had lots of time to play board games, talk, go on walks (silly family... I did not do that), hot tub in the rain and just be together. On our last day we took the ski lift up to the top of the hill and had a picnic (only a little rain that day). We wanted to get a little walk in and hiked part of the way up the ski hill. I was definitely out of breath but I did it! That was definitely my favourite non-family part of the trip -- being able to accomplish something physically when my body isn't as strong as it was. The favourite family memory was playing board games in the evening with everyone from grandpa to my youngest niece (Matias tried to play but we usually wanted him to be in bed to play with less distractions).

Going up the ski lift

Peaking out the back of the stroller and yet he somehow is still strapped in... I really love this kid!

Playing in a stream while on our hike

The day after we got home from Sun Peaks, we had five guests arrive from California -- my former roommate from university, her husband, son & parents! It was so much fun to see them and hang out. We even got to reminisce with another dorm mate from university! Who would have thought that sixteen years later we'd be pushing strollers beside each other with our boys.

Playing with my roommate's son

Getting to know Each Other... and our Original JR (the stuffed animal)

Sixteen years ago we were in the same dorm

These last two weeks have been a wonderful break from my cancer world. Every once in a while though, I had an appointment where I had to list my side effects & discuss treatment options. It's then that I'm pulled back into the reality of my situation. I have cancer.

I make plans for the future not knowing if I'll be alive to enjoy them. I have friends and family who come and visit and I don't know if I'm saying goodbye or see you later. I go shopping and don't know whether I should buy some things or not based on my life expectancy (I'm still working on the same bottle of shampoo that I started when my hair was first coming in last August). 

All of these thoughts and emotions get jumbled up inside me and so when my boy puts his hand on the top of my head and says "hair," I start to cry.

I don't know where this blog entry is going. I think I've had such a busy and wonderful time with family and friends that my brain is starting to process things again. Will I see them again? Will we go on another trip with them again? What size of clothes fit my body this week? Should I buy more of a certain item? Do I really need it? How much more chemo & radiation am I going to get? The questions are never ending.

I still have hope and pray for complete healing and I trust whatever He chooses. I'm just struggling with the here and now of today.

My latest side effect -- peeling feet! Hence the many pumps of lotion.

The Gift

My family and I were supposed to be attending our family reunion in North Carolina this weekend.  Unfortunately there were lots of reasons why I couldn't go... we didn't know how I'd be feeling, my doctor wasn't very keen on me travelling while on chemo, etc. Instead my parents and sister's family spent these last five days on a vacation together a little closer to home.

But... back to the family reunion. My aunt asked me if I'd share a little something about what I've been learning on my cancer journey... specifically the importance of family. Since I couldn't share personally, I put together a little video.

(Many pictures were stolen from Facebook.  I apologize if I didn't get everyone in or if I didn't get the best picture of you or your family. Next time, please post pictures that you'd like for me to steal for a video.  Thanks!  :-) )

As well, for some unknown reason (to me), my video is not uploading here... so feel free to watch it at the following link.

http://youtu.be/7btOWf6WjMk

The bracelet my sister gave me for Christmas.

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)!

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

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.

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. :-)