Brain, Bones, Liver & Blood

In April when I was diagnosed with brain metastases, I had three tests. Compiling all of those results, I was told I had about nine lesions on my brain plus some floaters. I had a CT last week & got my results this morning. My doctor told me that only one lesion could be seen in my brain and it's much smaller than in April. The CT does not look for floaters so I can't say if there's improvement or not. This is really good news. In terms of treatment (radiation and chemo), these results are abnormally good!

Then came the not as good news that the cancer in my bones has spread and one of my vertebrae is fractured. That could probably explain why my back has been hurting more lately. Basically, pick a bone from my neck to my hips & it has cancer in it. The report says that my bone metastases are unchanged from the last images... so perhaps I missed hearing this news when I got my last results or maybe there were other parts of the results that were more important to focus on. We'll see if some more radiation would be beneficial for my back pain.

My liver... stable! Yay!

My bloodwork... most things normal except my neutrophils are low. This means I'll wait until next week to see if my neutrophil count is up enough to get my next round of chemo.

All in all, I am so thankful for these results. My doctor actually used the word "exception" to describe my response. He said that most people usually decline when diagnosed with brain mets and floaters. I couldn't help but smile 'cause I was wanting to say... I have thousands (and maybe tens of thousands) of people praying for me and I have a big God who is carrying me through the good and the bad.

We've been praying hard for my brain & liver. Please don't stop. Can you please join me in praying for my bones? Healing of bones with cancer, protection for my healthy bones, pain that is manageable.

Plus, I just wanted to congratulate one of my nurses at the Cancer Agency who won an award: the Amgen Award for Innovation in Oncology Patient/Family Education!  Congratulations! I'm so thankful to have you on my team.

Feeling a little jealous of these healthy looking bones (but not jealous of the metal rod up the bum)

Stretch Marks

Stretch marks.

You know what they are. Pregnancy can often be a cause of stretch marks. Growth spurts can also be a cause. And of course, steroids can cause them. They happen when some part of your body grows too quickly and your skin can't stretch/adapt quickly enough. 

I somehow miraculously avoided stretch marks when I was pregnant... but I didn't manage to avoid them with steroids! I have stretch marks in lots of places now... my thighs, my waist, and even my the skin on my face is different.

I have gotten some spiritual stretch marks too. Going from a breastfeeding mom to a palliative cancer patient in a matter of three hours came as quite a shock to me. It was then that I had to decide in whom I was going to give my trust. I felt I could trust my new doctors with treatment plans... although it was difficult to trust them completely as previous medical mistakes had happened. I could trust my family and friends with my emotions and to care for me physically. I learned to trust my church to take care of things I would have been too proud to accept before my diagnosis.

But all of that was not enough. I needed to have my heart firmly trusting in Him and His plan for me. I believe that God hates cancer even more than I do... but I have it and choosing to turn away from God at the lowest point of my life was not an option. The earthquake of this cancer journey has certainly shaken my faith... but instead of causing despair and destruction, the rocks of my faith have shifted and created a foundation that is even more solid.

So even though I have unsightly stretch marks, I can use each little shiny line of skin to remind me of how God is growing me.

He's reminding me to:

- trust Him with my today and tomorrow

- surrender both me & my family to Him

- spend time and have conversations with purpose

- give my body it's best ability to be healthy and trust Him to choose how my body will respond 

- live today fully

- rest in Him

- celebrate

My stretch marks have been earned... not simply something left behind. I'm learning and growing (both figuratively and physically) through my cancer journey... and my body has beautifully ugly stretch marks and scars that remind me of where I've been and where I'm going.

Little Mr. Independent (growing up way too quickly... no stretch marks on him, just bumps and bruises so far)

Picking Blackberries

Two years ago today I was picking blackberries. Blackberries usually aren't that memorable... but they are when you're in labour. 

It was a crazy hot week in August and my plan was to pick the hottest day of the week and go into labour on that day because the hospital has air conditioning (and we don't).

I woke up early that Tuesday morning and knew it was time. With lots of adrenaline, we woke up, had showers, finished packing, and called in to the hospital to let them know we were coming. We had to register in Emerg and when asked my reason for coming to the hospital I said, "I'd like to have a baby today please." The receptionist looked a little shocked and then smiled.

Up the elevator & down the hall we went. It was the end of the night shift and the question they asked me was, "Are you sure you're in labour? You seem to happy to be in labour" (Due to my control freak nature and because the nurse in me was curious, I'd gotten some of the nitrazine paper that the labour/delivery nurses use to see if your water has broken... I'd already checked at home and the strip turned blue! We'd have our boy in our arms in the following 24 hrs).

Everything sort of paused for shift change and then we were moved into our room. My contractions weren't regular or strong but they had to admit me because my water had broken... so I was told to walk. I asked how far I could go. They said however far I could walk and get back in time to be checked in an hour.

Our first hour was spent getting coffee and breakfast at the cafeteria and calling our telephone provider to try and get texting added to our plan so we could communicate with my family who lived four hours away. It was supposed to work immediately. It didn't.

The next hour (after being on hold for a long part of the walk), I called the phone people back and said, "Listen. This was supposed to work last time & didn't. I'm at the hospital and in labour right now and I'd really like to be able to communicate with my family. Can you make that happen?" The customer service person was male and he asked, "you're in labour... right now? Yes ma'am, I'll get that done right away ma'am." Xhevat and I chuckled. And I was able to text.

The following hour we walked a different path and found blackberry bushes. We got a bucket from the nurses and spent the following hour picking blackberries for the nurses. Walking for hours in flip flops was hard on my feet so hospital lunch and a nap were in order. And of course, when I stopped moving, labour stopped as well.

So the afternoon brought some IV meds and getting on with labour. Within about four hours of starting these drugs, I was holding a little baby boy in my arms and Xhevat was beaming with pride.

Not much later I hear a knock at the door and in walked my niece, sister & mom. They had driven the four hours to surprise us (and meet our baby). It was such a special moment. Xhevat beaming. Me sort of dazed & overwhelmed. And our little boy. We started our day as a family of two and ended as a family of three.

That little boy born two years ago has changed my life. He was the fulfillment of some of my hopes, desires and prayers. He has brought so much joy, hope, laughter, tears, frustrations, sleepless nights, liveliness, etc to my life. I really don't know how I would have coped these last 18 months without this little boy waking me up & encouraging me every day. 

Happy second birthday my little boy. You are incredibly special to your mama and daddy and we thank God for your joyful, energetic, celebratory nature. No matter how hard things get, may your life reflect the joy, hope and love that God has given to each of us. We love you dearly.

Meeting our son

Celebrating with some cake

Two

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!

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

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!