Tuesday, 19 August 2014

My Monday

If it's morning, my unwritten rule (to keep my sanity) is to let my boy stay in his room until 8am. If he wakes up earlier, he can play. And of course, if there are extenuating circumstances (cries of pain, lots of kicking, I'm feeling energetic in the morning, etc.) I'll go in and check on him. As my parents are staying with us and my dad wakes up horribly early, he takes the morning shift and gets Matias when he wakes.

Yesterday I woke up to screaming at 6am. He cried on and off for a while. My mom also woke up and tried to get dad to get him. Because my dad was moving too slowly, my mom went to free my boy from the prison of his bedroom... only to find the problem was a poopy diaper.

By that time Matias is in one of his moods where he was not cooperating with a diaper change. Mom carried a half naked boy down two flights of stairs for dad's help. It took two grown adults pinning him down just to get clean diaper on the kid!

He seemed a little off in the morning... just in a bit of an owly mood. We took out new cars and trucks to play on his train track. He ate a good lunch and as I was putting him down for his nap I noticed a smell. As I'd just changed his diaper, I knew it wasn't that. Oh joy. The source of the smell was his morning poop smeared all over his sheets, favourite blanket, and toy. The first two items were thrown in the wash. He cried even more as he tried to fall asleep without his blanket. Waiting for him to fall asleep, I sat in front of his door with toy and disinfectant wipes trying to clean all of the little grooves and indentations of his toy with letter buttons (I even used the pointy end of a screw to get the half dried poop out of the tiny crevasses).

A friend visited in the afternoon. My boy eventually fell asleep but it was a short nap. Still in a slightly off mood but consoled by new cars, we played. He ate nicely with us for dinner and just as we were about to relax for the evening, our kitchen sink gets clogged (two sinks full of murky water & partially garburated food). My two attempts to fix the problem were not successful. Fortunately I have an amazing husband. He removed the trap (getting baptized by the murky water in the process) and finds the culprit. 

To whomever tried to put a straw down my drain, it doesn't work! Next time please use the garbage.

Eventually things get put back together, the floor is mopped, the active boy is on a walk with the grandparents, and we sit down to rest. After the day's unusual events, a beer was in order... but we had none. So we hopped in the car and off to the store we went. We returned and were finally resting on the couch when the active boy and his grandparents returned.

No book, food, car or milk would slow this kid down! An hour past his bedtime (remember he was up at 6am and didn't have a good nap), he was still going strong. We decided to both put him to bed.

Diaper changed. Teeth brushed. Pray together. Not expecting Matias to respond I routinely said, "Matias, can you say... Dear Jesus, thank you." And before I could get any more words out I heard a little voice echo my words saying, "Dear Jesus, atchoo" and the rest of our prayer was said in gibberish. My heart melted.

Way past his bedtime, we went to bed being serenaded by the alphabet song, counting and the sounds of the letters coming from the next room.

As tiresome as some of my Monday's "adventures" were, these are good problems to have. I'm thankful that these problems were my biggest concerns for the day.

Lots of places for poop to hide in this toy!

Saturday, 16 August 2014

Pick Me God

Have you ever wanted something so badly that your heart physically aches when someone else receives what you want?

I've been on this journey for eighteen months. In that time I've heard of and met many people who have been diagnosed with various cancers from stages I to IV. We've shared stories, nurses, dark humour, chemo socks, side effects, fears, joys, and so much more. It is horribly comforting to meet someone who understands. You never want someone to bear a similar burden but yet it's refreshing to be able to confide in someone who is in a similar situation.

The hardest and best news to receive from these friends is that they have finished their treatment and their cancer is in remission. I rejoice with them. I am thrilled that surgery or chemo or radiation or prayers have brought health and healing to their bodies.

But at the same time, I'm grieving deeply. Grieving the loss of someone who is journeying with me. Grieving the fact that they are finished with treatment and I am not. Grieving their health or wellness and my lack of it. Grieving that they get to grow their out and I'm wondering when I'll have to shave it again.

I guess when it comes down to it, I'm jealous. I want what they have. I want to have curable cancer. I don't want to have a palliative diagnosis. I don't want unpredictable brain metastases. I want to be able to dream and plan for Christmas or where I want to vacation next year. I don't want to be dying.

Yet, we're all dying. And in a way, I have it a little easier because I'm aware that my health isn't good and I can prepare for the future. I can write cards and take pictures. I can have intimate conversations and boldly share my heart. I can hurt with others who are hurting with new understanding.

I crave normal and/or stable. I'd love for my biggest problems to be a son who's teething or switching shifts at work or commuting to work (Please understand, I'm not saying that those aren't real or significant problems. I just think I'd rather have those problems).

I'm going to have another CT later this week -- my twelfth CT in the last eighteen months. More anticipation, more anxiety, more radiation. I would love to get the news that they can't find any cancer in me -- my cancer is in remission forever. I'm healed. And there could be no possible human or medical explanation... other than God.

So pick me God... for complete healing (or even just that my cancer is stable). I know I don't deserve it given all that You've done for me. You've told me to ask and so I will. And even though it hurts, I will celebrate with those who get good news. And I will continue to hurt with those who are hurting. Please pick me God.

Trying to fix what's broken

Sunday, 10 August 2014

Oral or IV Chemo

Last week I was asked if it was easier to take chemo orally (a pill) rather than by IV. When I first decided to take oral chemo I thought it would clearly be easier... but over these last nine weeks I've had a chance to think about my choice.

Chemo is still chemo -- nasty medicine with undesirable side effects that's supposed to kill cancer and help me live longer. To me, IV chemo is going to the Cancer Agency once every 1-4 weeks and getting a poke. I sit there for a few hours and chat or sleep (and get as many warm blankets as I want). With oral chemo, I pick up my drugs from the Cancer Agency and then am reminded 28 times in two weeks that I have cancer (but at least with this chemo, my hair has a chance to grow).

I guess at the end of the day, it really doesn't matter to me if I get my chemo orally or by IV; I just want it to work. I'll be having a CT in a couple weeks to find out if my chemo is working (The human body is amazing! Our brains have a barrier that do not easily allow things go from our blood into our brains... that's great when you've got something bad in your blood... but it presents a bit of a challenge when you're taking a medicine which travels through your blood and needs to get through that barrier to work on the bad things trying to grow in and around your brain). 

So I'm praying that this medicine would get through that blood-brain barrier and shrink and destroy the cancer in my brain. My bloodwork and symptoms are suggesting my chemo is working but with the CT we'll get a clearer picture of how my brain and liver mets (and the rest of my cancer) are doing. Other than being tired and a few other side effects, I'm doing quite well. I'm thankful to be finishing cycle three of my chemo drugs today... that's three hundred thirty-six chemo pills consumed. Now for a couple weeks to let my body recover.

The last four pills for cycle three

At the zoo

Feeling chilled in 25 degree weather... good thing I have my homemade toque and new quilt!

Thursday, 31 July 2014

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.

Saturday, 26 July 2014

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.

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