A good day

You know that thing you do where you keep eating all day in hopes that it will settle your queasy tummy? But then it doesn't and you feel like a gross pig cuz you ate all day and just feel full? Ya, that.

This mornig was different: after cereal and time w B at 6:00am I went back to bed til 10:30. Most days I stay awake so I can be available and visible to the kids as their normal morning routine. Today I was just so tired. Weird. Anyway, got up at 10:30, had breakfast (potatoes and eggs as a hash is my go to these days), showered and dressed even! Then I started tidying up the clothing explosion in my bedroom. Hung a whole lotta clothes and tired out my healing shoulder. Then did paperwork all day which stressed a knot in the back of my healing shoulder but was darn pleased to have accomplished so much in one day! Even met my kids at the bus and drove to pick up oldest at a friends' house! Wow!! Big day for me... ready for bed and its only 7:00! lol

So grateful for days that see me off the couch and puttering around here. It feels nice to contribute even though it never feels like enough. Today was a good day. Thank you Lord. I am grateful.

Jesus Calling [excerpt]

Anxiety gains a life of its own, parasitically infesting your mind. Break free from this bondage by affirming your trust in Me and refreshing yourself in My Presence. What goes on in your mind is invisible, undetectable to other people. But I read your thoughts continually, searching for evidence of trust in Me. I rejoice when your mind turns toward Me. Guard your thoughts diligently; good thought-choices will keep you close to Me.

He will have no fear of bad news; his heart is steadfast, trusting in the Lord. ~ Psalms 112:7

Kristin: This doesn't mean I don't worry. It does mean I can leave my worry with God and know that He cares for me. I like that a lot. Today we had our end-of-cycle-one appointment with the oncologist. He was pretty matter-of-fact that my side effects and such were all textbook though he did say "significant" which made me feel like I had done well managing them. Gold star for me, yay Kristin. LOL

Prayer request

Will you please pray that my ribs will align properly, that whatever bones were aggravated by surgery will quietly slide back to proper and happy place. I am having significant discomfort (well, pain... took the heavy meds last night to try and get relief) that comes and goes but the going is less frequent the last two days. It is directly behind my right breast... Feels like a muscle thing. If I could go, it feels like that sharp pain when you need to go to the chiropractor for an adjustment. Radiates up to my neck and when I breathe or cough or move. It is making me grumpy. I can't lean back or lay on my side and I need God to please provide relief. Thank you.

Update (Feb 1): Thank you for praying.  I have had much relief that last few days.  Yesterday I overdid things with hanging up a whole lotta clothes and then doing lots of paperwork/writing and so have a knot in my mid-back.  BUT the pain at my ribs has been gone, good, manageable... I can't actually think of having to 'manage' it, God heard your prayers and answered.  Thank you!!!  Thank you, Lord, for listening and hearing and answering our prayers.  

Week3, day 1: Clinic day

Week 3 means no chemo but lots of appointments. I am so grateful to the awesome booking clerks for stacking appointments rather than dragging hem across the week! Two appointments today (pharmacy and radiology) and one tomorrow (oncologist). The care and organization and keep-on-top-of-it of this BC Cancer Agency is amazing. Really. Don't you find it incredible that the pharmacist meets with you to discuss all meds, any supplements, any protein shake you might be taking to make sure nothing interacts to hurt you? That level of care, thought, planning done on my behalf sure takes a great deal of thinking or "trying to figure this out" off my shoulders and out of my head. I appreciate that a lot! And every doctor, nurse, tech all reads your file and each others' notes each time before you meet. So everyone is working from the same plan and page. Again, what a great deal of thinking out of my mind and onto these trained professionals. I like it. A lot. Teamwork. Nice! Extra eyes. Nice. Great care: such a blessing right here in my own town.

Last night was some harsh rib pain for this chickie. When they moved my rib out of the way to remove my kidney, something chiropractor-required happened... unfortunately, due to the cancer in my shoulder bone, chiro isn't a good idea right now. Ended up sleeping sitting up and leaned over a stack of pillows. Sleepy girl today for sure. Thankful for a kind husband, meds, pillows to stack, nap time!

Prayer: mommy's rampage

Dinner time. Stress on a good day... the bewitching hour. Hard when momma is frustrated with her lack of energy and ability and being-here-ness. Apparently I was snippy... "Don't breathe on the pizza!"... "Every night we need ..."... the usual. Pretty sure most dinners at most houses have elements of this. Tonight, when B (8yrs) prayed for dinner, "... And I pray for mommy's rampage, that you will calm her down and make her shoulder feel better and give money to the poor people so they can have food."

And for me... heaps of guilt. And then for him, heaps of sorrow for hurting my feelings. For everyone, confusion. In fairness, I wasn't even rampaging. In fairness, he later explained that he was trying to explain how I felt to the others around the table. What the hellaballoo is going on around here?! Oh, ya, cancer. Sickness with a dragging-out-too-long-already learning curve. Still figuring things out. Ready to be better now. Now. Please. Now! Oi. Praying for patience for us all. And peace.

Feeling whiny maybe? Sorry. Also trying to just document a bit of the reality of the feelings and emotions here.

Priceless: run in to your arms

My six years old, running on the treadmill, singing, "I run in to your arms, the riches of your love will always be enough... nothing compares to your embrace..."

Thank you, God, for smiles and the hearts of these dear children.

Cold in my nose

You know that cold feeling when you are outside and the air is super chilly and when you inhale it freezes your sinuses? I have that a lot. It's weird.

Today my grade 9 kid is home for exam week. I love lazing around with Kyle, we're watching food and reno shows and just chilling. Love that boy!

Prayers

"... and take the cancer out of mommy and everyone else..." B, 7yrs.

Praying for dinner tonight and most nights. I am so heart-happy to know how our children speak to their Heavenly Father... Like He is right in the room. Accessible. Just as He is. I love that.

Identity confusion

Trying to balance what I have energy for, rationing the day, focusing on being mommy and being me in this family, not able to just get things done. Learning to adjust or do things differently. Such a learning curve. Figuring things out on a playing field that's changed daily depending in chemo or who has what germs. Hugs, no hugs. Connecting without face time. Learning to be okay with new ways of doing things. My goal is to come out of this not having fallen too far off course... allowing the time and unfolding of whatever the new course may look like. Understanding that days and life and all is fluid, the course is ever shifting. That's okay, too.

A good day

Such a good day. It's my Mom's birthday and I am so happy for her to have a lovely, not-caregiver-ing me day. My bro-in-law spent the day blessing us with garage organization. My sis blessed the inside of the house with organization. My other sis cleaned the kitchen and fought cutlery into drawers. Hey, whose birthday is it??? I am just so humbled and overwhelmed by the love and care and sacrifice of others on my family's behalf. Amazing. Thank you all. I am just speechless and do leak happy tears when I think on these things.

Still having the chest discomfort of indigestion. I don't like it, it hurts and it is nerves-making.

Today felt like a fairly normal day... that is a huge gift in itself.

Heartburn

Having an inkling of the tight chest pain-ish feeling today. Hmm. Seems to be the day after the anti-nausea meds are done. Seems to get worse w certain foods. Yay for slushies!

Praying it stays mellow enough and dissipates quickly w the heartburn med I just took.

Jesus Calling [excerpt]

Kristin: I love how she shares God's message. So real, but gently. Like kindness and a soft hug. These words are lovely to me, not just in cancer but in parenting and marriage, and grocery store line-ups, and life. Made me smile this early morning. How amazing that God lined up the author's writing years ago for my morning today! He is bigger.


Excerpt: Give up the illusion that you deserve a problem-free life. Part of you is still hungering for the resolution of all difficulties. This is a false hope! As I told My disciples, in the world you will have trouble. Link your hope not to problem solving in this life but to the promise of an eternity of problem-free life in heaven. Instead of seeking perfection in this fallen world, pour your energy into seeking Me: the Perfect One.

It is possible to enjoy Me and glorify Me in the midst of adverse circumstances. In fact, My Light shines most brightly through believers who trust Me in the dark. That kind of trust is supernatural: a production of My indwelling Spirit. When things seem all wrong, trust Me anyway. I am much less interested in right circumstances than in right responses to whatever comes your way.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
—John 16:33

Even in darkness light dawns for the upright, for the gracious and compassionate and righteous man… He will have no fear of bad news; his heart is steadfast, trusting in the Lord.

Draggy

Too drained to sit up for meds. It's a party up in here! [weak smile]

Week 2, Day 3: frenetic energy

I am having a solid 6hrs of sleep each night, waking to pee, then back to bed.  My goal is to stay in bed and not get up and let my brain start whirring too fast.  For the most part I think-doze my way to 7am and then am getting up with my oldest and here for the littles to crawl out of bed.  I like this.  Makes me feel like I'm still the Mom here, at least for the hour in the morning.  I line up their vitamins (which makes me super happy... cancer...eat greens... healthy kids... wisdom of routine...) and give them their hugs (don't tell the germ brigade... hugs are medicine too, so I figure the calculated, masked-if-need-be hug is a good balance!)... and then putter like a mad woman.

I wake up super shakey from the chemo.  Like, I can barely type for the shakes in my arms.  And, having spent the last 1-3hrs laying in bed dozing-thinking, my brain has already hit the ground running long before I allowed my body to start its day.

This morning I made smoothies (pineapple, strawberries, spinach, hemp seeds, protein powder, vit D) for 3/6 of us (thank you Erika for getting that MB part for me... awesome!!!!), made baked omelette thingies from a recipe off Pinterest (hucked eggs, spinach, mushrooms, cheddar in cups for maybe 8 minutes), cleaned up my messes even, fought with a salad that attacked me out of the fridge (thank you Kyle for cleaning that mess up!), and am now drinking my detox water (lemon and cucumbers in water... I hate cucumber but get the chemo out now that it's gone in and eradicated cancer cells...let's keep the white cells fed so they can birth new healthy white cells to soldier me on to cured!)...and the list in my head is going down on my happy yellow notes pad to stop the insanity of the words tumbling around in my chemo-slowed brain!   Phew!   Frenetic energy... frantic, frenzied... 

Makes me laugh at myself.  That's a good start to any day!!!

May your day be sunshine and smiles, accomplishings and resting, too!

Kristin

Update:  So the energy started to wane at 9:30 and was a full crash at 10:00.  I made it to the recliner and couldn't even turn the channel on the tv.  Mom stopped by for a quick minute, I threw soup into the crockpot (craving root vegetables these days?!?!), then dragged myself up to bed at 12:00 for a sleep.  Woke up at 3:00 to try and wake up before the kids came home.  Went to meet them at the bus in my jammies (seriously... that's like a total sin in my books but 'meeting kids at bus' trumped the energy drain it would be to change), and now am sitting here typing with not a whole lot of energy to share.  So... a new schedule for today... will see how the evening pans out with 2/4 going to a birthday party and the other 2 watching hockey with daddy.  Feeling like the post-sleep grumpy was able to relax out of me before the kids got home, so that's really good!  I am happy with just that.

Week 2, day2: grumpy and dull

Lest you think I am happy and chipper all the time... I assure you, I am not.

Still quoting the positive, still cultivating the glass-half-full, but feeling overwhelmed by four children still doing their children-y things and with their childish ways and not feeling any sort of anything but blah. Had a big, hard sleep this afternoon and woke up grumpy. Short-fuse. Just... everything is loud and bugs me.

The second chemo feels... heavier. Like, I am dull. My skin is dull. My hair is dull. My sparkle is harder to lift up to bubble forth. My smile is even ... meh.

And the children still need their mommy. And my husband deserves his wife to lift him up and encourage him as he does alllll the work here.

Some moments in life are less sparkly, that's okay. This is when I start humming "and joy comes in the morning..." as I send the kids to bed!
[smile]

God just brought this across my path... it sums up this moment kind of nicely.  

Week 2, day2: stop to savour the miracles

Just last semester I was wearing a full ice pack to university wrapped in my scarf. I couldn't write a sentence. My note taking was atrocious, nonexistent, and I was always nervous my prof would notice. This morning, waiting for my oatmeal to cook, in the quiet of a sleeping house... perfectly beautiful print. As the list was being written, so too was the wonder being imprinted on my heart. God is here. He is able to do more than I could ask or think. I am so overcome with happy and thankful that this God-of-the-universe is just so very "here" and present in each day. We need to be open to seeing and acknowledging and naming the minutes. Sometimes they quietly sneak up on us, an early morning gift. Sometimes we have to sit in a crying heap in the floor and really count them, loud and angry and grasping. Cultivate it, friends. Cultivate the stopping-and-acknowledging-and-savouring. God's blessings are only limited by our imagination... For He has done great things, we just need to see.

Chemo 2, here we go????

So, still not working when they try and draw blood out through my port. Meds on board... Gotta wait an HOUR (til 10:30) before we can get the hours of chemo going. Good thing mom and I are fairly entertaining!

Hello Good Morning.
It's 5am and I'm up.  Should be sleeping but I think I pulled a muscle in my sharkbite, and then that has caused sharp pain in my right rib cage... from the chemo chair.  They had me lay sideways in that deep recliner and then tip me head-down to try and get the clot to move...and something tweaked.  Yowch.  Too much time sitting and laying around.  Shawn brought the treadmill into the house so I can get moving.  It's cold and sunny but the sidewalks are so slippery that I can't always risk the walking outdoors.  Got up and did some calistenics this morning.  Should be back to sleep so I can be up and out for my 9am appointment.  Curious to see how today unfolds.  Need to go to the chiropractor so bad, no one will risk it.  So, walking and stretching I shall do... and maybe I'll try the WiiFit.  My Wii age is probably 112 yrs old!  lol

Will need to figure out some pillows to stuff into the chemo chair...it's built for taller folks than I but there are lots of pillows and blankies at the hospital so will make myself a little nest.  Last night the Rubik's cube sharp pain came back briefly, I think I was laying too much on my back.  I need a personal nurse... keep forgetting to take my vitamin D and calcium, it's a huge effort to remember to drink the 6-10 glasses of water per day.  Need a sticker chart like in kindergarten, but I'd forget to add the stickers.  My brain is used to juggling a zillion things, and it's taking a long while to adjust to just two or three.  [eye roll]

Mom is taking me to chemo today.  Shawn has so many scheduled things at work that I felt bad asking him to move.  Mom will be a good companion so I'm not worried about that at all... but I will miss my husband.  I just want him with me all the time.  Another new thing...life is more 'two ships passing in the night' with schedules and four kids...and then scary happens and you just want what you want: your spouse. 

Feeling pretty mellow.  Not afraid of the chemo.  Need to work on my facial expression...make it more neutral.  Poor nurses always think I'm scared out of my mind when really I'm just processing and thinking and it furrows my brow.  Today... I will work really hard to process with a more neutral face.  And I'll remember the emla (numbing) cream for my port.  I remembered just one minute before she called my name yesterday...and that sent me to huge fretting.  The nurse brought ice and the humungous stabby needle slid right in.  THANK YOU LORD.  But... now that there are a few hole marks in that little port area... emla!  It just makes my brain relax, takes one thing off the list.

Looking forward to getting more cancer eradicated out of me... go chemo, do your job!!!!

Have started looking forward to the summer...even speaking to the future a little.  It's a weird and difficult thing.  I've always parented with very specific words....our kids can totally pick out a nuance of a promise or punishment based on one word added or left out... they know I only speak what I can deliver on.  Cancer has changed that from my perspective... I still only want to promise what I can deliver on, but... this medical journey is open-ended, no 'cure by' date.  I'm happy to notice that I have referred to camping and summer a few times... that's good progress on the worry and peace front.  I work hard to cultivate a positive attitude, but I also don't want to make sweeping statements or promises that would be broken.  I always want my words to be true.  I think that's why I like the Bible verses and quotes... uplifting, affirming, God's power not my nerves.

The weather has been so sunny and beautiful the last few days... here's hoping that the sky stays bright even though clouds have rolled in.  Suddenly it feels like it should be spring, and yet it's not even February yet!  [smile]  Cabin fever. 

I'm pulling together a few projects to keep myself from feeling like I'm not contributing to the family...sorting paperwork, photos into albums maybe, a little sewing perhaps.  Nothing to huge, but something to keep the days moving forward.  I don't want to become such a sloth that in a year from now, when I'm recovered, I have to work super hard to get out of the slothness... better to keep chugging forward little by little!

May the Lord bless your day.
Kristin

Chemo 2: delay

The good news is that my body is young and healthy and doing its job... identifying and clotting against the port. The delay is that I need some blood unclotter medicine which makes my chemo appointment longer and today is too late in the day. So, we are heading home and will go back tomorrow at 9:00.

Week 2, Day 1: chemo #2

Woke up to sunshine, a good rest, a little nausea, kids getting ready for school, hubby a little stressed to get them to the bus.  I'm really enjoying the 8:20 wake-up... I could sleep through their noises, but why would I want to?!  The last three days I have put my full efforts into making eye contact with the kids lots, hugging when hugs are wanted or needed or even hinted at, making a point to engage them in conversation even as they flit through the room just long enough to sideways-glance check on me.  These children of ours are amazing.  Kind. Thoughtful. Astute. Heart-meltingly sweet.  Tears keep flowing from my happy heart.  They are getting used to that... I've always been a crier when my heart is happiest.  This they know, we have talked about.

Chemo#2.  Told M (daughter, 11yrs) that I had chemo today, she got quiet, contemplative, she's a thinker.  "Why did God make you have cancer?"  "He didn't.  Adam and Eve sinned, sin came into the world, disease is in the world.  God's heart breaks that I have cancer.  He is sad that we are sad.  Our hope is in Him.  God didn't make cancer." "Ya.... "  silent girl, thinking, wondering, wishing this wasn't real, wanting her Mom off the couch, wanting her Mom to be okay... M doesn't like surprises, not knowing when I will be better is too much of an unknown for her.  I get that.  More tears.  She reaches out like this big girl grown up and holds my hand.  A quiet moment with my girl then she's off to school.  Heavy-heart for an 11yrs old.

Yesterday I was in-my-head worried a little about chemo.  The scare with so much pain on Saturday is still something too close in memory.  The nausea sits on my chest, boils when I walk or move around, is like indigestion just waiting to roll forth and knock me over.  Manageable, so long as I don't eat, move, drink, walk.  But manageable... weak smile and an eye roll.  

We are in "day 8-10" right now, these are the days the nurse said my counts would be the most germ-phobic... keep the sneezes and coughing public away.  My counts were very high (good) on Saturday night, am trusting, praying, begging the Lord to keep them that way.  We waiver between letting the kids within 5 feet of me and me grabbing them into a big everyone-hold-your-breath hug.  I can't go without the hugs... it's torture.  And at this point, my counts are high and I think it a calclated risk with the pay-out being 'normal mom time'.  My dear husband just wants me safe and not-exposed.  It's a balancing act: every emotion, every food or drink intake, every everything... it's all a balancing act these days. 

I'm used to balancing life and 4 kids and volunteer stuff and my university courses and friends and and and ... and I'm pretty good at it.  But this... this is so much different.  Thinking on people who have had cancer and survived, hoping to ride their odds, knowing 'odds' aren't actually something I believe in, but thinking about those who cancer took.... the mental aspect of anything is always the big part... here, too.

So... chemo #2.  Am believing for healing.  Am having faith in the meds to keep the nausea down.  Am glad to be eating after 9 weeks of no appetite post-op... even though that then makes me queasy... body needs food to grow strong new cells.  Praying peace, thankful for the help, spending the day with hubby working from home so he can take me to chemo... like having him here so very much.

The sun is shining.  Will go for a walk when the ice melts off the sidewalks, can't slip and fall, have to be careful not to break bones... the frost on the rooftops is gorgeous today.  Rambling.

Kristin

Just keep swimming

Too sunny to stay in, on a little walk with my hubby. Feel the sun on your face today!

ER: chest pain

And here's the dip. After spending the afternoon writhing in pain, and seeing the heartbreak on my husband's face, we made the call to the "on call" after hours oncologist. His instruction was to go to the hospital and be checked for blood clots. Because there is cancer in my lungs, blood clots are a concern. I didn't know that.

We got to the ER, mask on, the isolation room (to keep me safe from germs because I'm on chemo), a heart EEG thing, bloodwork, waiting which gave me a good long nap. The doc ruled out blood clots, we agreed it is esophagus aggravation, expected with chemo. They fed me to induce the pain, then gave me some new meds to add to my daily routine to balance the increased acid that the other meds make. This should help, it's a once daily pill that is typical for chemo and radiation patients.

Five hours later, emotionally and physically exhausted (Shawn and I both) we got home and got to bed. I slept well, he seemed to have slept soundly, too. Emotionally drained today from the "too much real" and scary of cancer yesterday.

The great news is that my white counts are really high!!! The request I have is that you please pray for my lungs with renewed vigour. That the cancer will shrink, that there will be no problems, not even one, that I won't have that horrible pain, that we will have peace.

Our boys were upset that I had to go to the hospital. The last few days all six of us have felt the strain and worry of "chemo has begun". We need God's help, every day and especially extra these days as we fight.

Thank you for your prayers. God is good, He will never leave us or turn from us, we need patience and faith and I ask for peace. For me, my husband, my precious little children, my parents and in-laws, my sisters and their families, my bro-in-law and his fiancé, my closest friends, every person and new friend praying and loving on us.

The last two days were hard with bits of scary. I don't like scary. I'd rather things be easy.

A week of "in awe"

Living in a miracle of use of my arm, pain free, clearer head than have had in months! So grateful for this moment!!! Went into chemo in pain and bad mobility, came home healed and healing already!!!!! Miracles!!!!!

And if you saw my before: after you would be shocked to actually SEE a miracle.

When I was sitting in the chemo chair, feeling myself fade, I knew that it was not something to fear or fight. I knew that my body was powering down, that something important was going on. I let my body sink into the chair and just rested into that moment. Full peace even though I could hear my two nurses brainstorming and calling the oncologist. About half hour or more later I started to need to pee (full bladder from IV for three hours) and was able to open my eyes and sit up. Got wheeled to the bathroom, walked back to my coat, got to the van with Shawn.

When we got home, both of us had a quick dinner and then I asked Shawn to come for a walk. He kind of rolled his tired eyes, knowing that my "walks" only last about 5 houses down the road before I was crumpled and hunched and hobbling home. But, he humoured me. And we walked all the way to the start of our subdivision, back past our house to the next cul de sac and back! I had clear head, energy, could walk upright, no sharkbite pain!

Got home, puttered and watched tv, went to bed.

At my 4:00am up-to-pee is when I noticed the miracle. For six months, I have had no use of my right arm... Can't barely write, can't always lift a glass without supporting the hand with my left hand, no reaching up or out. To get up in the night I would use my left arm to pick up my right hand, pull the right hand across my chest, then pull myself over in a big beached-whale heave onto my left side while then using my left hand to get myself rolled out of bed. Six months. On this morning, I woke up on my back (usual), sat up and got out of bed. !!!!!!!! And I stood there for the briefest few seconds, stunned by the miracle I just lived, knowing it was huge, needing to get to the bathroom. I was in shock the whole way to and from the toilet. Got back to bed and crawled in like an able person, not gingerly setting myself into the pillows in fear of the pain. My port did not sting, my cancer shoulder did not burn, my arm was moving without help!!!!! I fell back asleep with a praise and a sense of wonder on my heart, knowing something big had happened... Just knowing that this was a miracle that only makes sense because it is God.

Wednesday morning I had invited my parents and sisters to go for lunch, if I felt okay. I felt okay! We got to the restaurant and had to wait and hour for the table... I stood out in the sun and waited for the whole hour STANDING!!!! No pain in my sharkbite. Held my own purse!!!!! For an hour!!!! Got our table and sat without pain!!!!

And then, the big reveal: I said look what I can do... Looked my Mom in the eyes... And lifted my right arm up above my head right there in the restaurant!!!! Mom and Dad and Keri and Kori were all stunned I think! Mom has helped me wash, these dear ones have watched me suffer for months, they knew this was HUGE! And then I think I showed them my second party trick... I could INHALE a huge breathe, several in a row even, without coughing to vomit! CLEAR breath!!!! Since Christmas I have not been able to take a full breathe in. Miracles!!!!!!

This week has blurred past, I didn't realize I was Friday until yesterday was in full swing. The awe of these miracles keep distracting me. The joy of showing the regular visitors and people delivering food: they who have seen me since the week before surgery are astounded. My 11yrs old daughter keeps commenting how "awake you seem!" We are stunned and astounded and I don't now why I didn't blog this til now. Just soaking in the "living a miracle", forgive me and celebrate this victory?!?! I sure am!!! Every time I get into bed I am shocked. I showered this week and was able to fully wash my own armpits!!!!! Seriously folks six months of crying and frustrated over showering! Remember the temper tantrum chemo morning cuz I couldn't reach my hair cowlic? I came home that night and twisted my hair into a ponytail with no problem!!!!!!! Hello???? Can I get an Amen????

Today is a hard chemo day. I had a Rubik's cube of pain in my chest all night: indigestion is a side effect, this was more than I had expected. Feeling better now, just nauseas. Not horrible enough for meds but makes me wary of opening my mouth to talk or to eat. Hmmm. Today I am missing my daughter's birthday party, to know me is to know that I am a very involved mommy and this is super hard for me to miss. Also, this is only week 1 of cycle 1... More chemo to come, to drag at me, to rest and recouperate from. As I said to Shawn, it's not like a 24 hrs flu, I know this is just the beginning, that's hard.

Right now I am living in the euphoria of knowing God is able, not presuming to know His plan, thrilled to be experiencing such drastic and amazing healing!!! At some point in this journey their may be a dip, I am holding tight to celebrate this moment right now!

Celebrate it with me!!!! Hug your loved ones extra, go for a walk, invite your friend for coffee... That's what I would do on this precious day if I can muster it: spend it with someone I love doing something silly and fun!!!!!

The euphoria of a miracle.... wow, so grateful! Soaking it in, holding it close, feeling it dance around me and tickle my senses.

God is good, all the time.

Week 1, day 5

The most wicked air bubble has taken up residence in my chest... Stabbing pain, need to belch? Didn't sleep. Please pray.
Feels like I've swallowed a Rubik's Cube and its lodged in the middle of my chest.

Friday morning rise and shine

Hello friends! It's only 9:34 and I'm up! What a nice change from the 10:30 and 11:30 mornings I've been having the last few weeks! Yesterday felt like such a normal day, I was so present in my family's lives! What a blessing!

Happy to report that last night's killer heartburn is settled, though I haven't tried to eat my Greek yogurt and apple sauce yet (a little nervous but also hungry... Yay for an appetite!!!). The new side effect this morning is taste: to be expected but my mouth tastes like yucky icky weirdness and here's probably where all the medical team warnings of "avoid your favourite foods on chemo cuz you'll hate them when you are better" comes into effect!!! Oi!
😃 Grateful to have a fridge and local stores with all sorts of variety of foods to try!!!

Have a great day!
Kristin

And here's the yowch...

Wicked heartburn. Whoa momma!

Week 1 meds: accomplished!

Finished my week 1 anti-nausea meds! I am assuming this means we have weathered the major tummy upset days... no one tell me otherwise, deal?!? [smile]

Had a good day. Feeling a little more drained of energy today but still more than the last nine weeks so I am grateful and savouring the moment!

From tomorrow on I am enforcing a major germ-free zone. I think I'll be staying in, I don't know how many outsiders I will allow over, if I could send the kids to school in hazmat suits I totally would! Days 8-10 are the lowest count days if we are going to have them (let's keep praying my numbers and kidney function stay strong/ high!!!), but comment and message and email me, I read and re-read each love and prayer you send!!!!

Mwah! Germ-free air-kisses to you!
Kristin

Week1, day 3

Wahoo! One completed set of chemo meds! Slept thru til 7:00 am!!!! Got out of bed with ease, no huge coughing, feeling good! Praise God for a strong start to the day! I have the shakes, the meds maybe or side effect of chemo? One silver lining side effect of a med was to feel "squirrely", which felt like "energetic" yesterday... I'll take energetic cuz yesterday was also 9weeks post-op and I'm tired of feeling tired! [smile]

Grateful heart, glad to be awake to kiss and cuddle my kids this morning before they leave for school. I even cut veggies for their lunches and got all the vitamins and breakfast organized!!! Wow! I feel ... blessed.

Have a great day my friends!

Week 1, day 2

Feeling quite good today! Praising God for a clear mind, strong body, manageable queasy, an appetite!!!!! Had lunch with my parents and sisters, picked up my chemo list stuff, home now with my kids... even met them at the bus. Silver linings abound. Just feeling grateful today... like, a lot.

Love this quote. What a positive outlook!

Week 1, Day 1: done

Brain is too tired to process right now, but that's not how my mind works. [smile] As you have discovered in this blog, I process and work through my emotions fairly close to, or in, the moment... and externally for you all to witness and read. LOL

Overall today was what I expected: kindness, compassion, not "painful" though I did feel the poke through the emla (numbing cream I applied to the port) and iced skin (just in case the numbing didn't numb enough). Was quiet and contemplative from waking this morning. God's peace was definitely on me and around me... even as I was having a full out temper tantrum primal yell over the stupid cowlic in the back of my hair... which i cannot reach due to the stupid shoulder problems the port exacerbated... and poor Shawn, trying, just has no clue about doing girl hair... I could feel God's peace keeping my tantrum to one big yell and not spiralling bat-crap-crazy out of control. And yes, even in the moment I could see the warped humour in that whole hot mess!

Anyhow... Finally got in the van, got to the lab for blood work, had blood taken, then sat for 45 min to wait for my chemo appointment. I was mellow and just played Boggle on my phone to pass the time. Wasn't feeling chatty at all today. Just quiet. Funny side note, when I am in medical moments I feel like I muster all this energy to answer questions, and yet the nurse is always saying "pardon?" and I need to repeat louder. Apparently my quiet isn't just mental/ emotional but it is physical, too. That's new for me.

Got to my 12:45 appointment (a short walk down the hall from hospital to cancer agency...amazing awesome blessing to be in one building) and then had to wait for another fifteen or so minutes for the blood work to come over (it was late). I didn't mind the wait, it just gave the emla (numbing cream on the port site) longer to work!
Then it was my turn.

At Chemo Teach we were told that my two caregivers could come to hear the info, but only for that first hour cuz space is tight. Sadly, that was misinformation so Mom had to wait in the waiting room while Shawn and I went in. The nurse was incredibly kind and so compassionate. When I cried, she cried with me, assured me how brave I was, told me I was doing good, promised that the nurses were all in this with me all the way. Wow. Wow.
May I ever and always be that kind of friend to the people I meet.

She accessed the port, I whispered, "I'm scared.. of the stab, of the weight of it, mostly of how it might exacerbate my already angry shoulder..." She was so patient and kind, took it slow. Just having someone tolerate my fear moments is the biggest blessing and help in getting through: I know I can, but I need my feelings, my timing, compassion and patience. The Cancer Agency staff are masters of this. Really good people readers. Wow.

Accessing the port was stabby and felt yucky and it did feel a bit sharp and diggy. Not horrific, but not "nothing".

As the saline drip flowed, so too did tears. Silent, sad resolve tears. Then quiet me. Shawn and Mom traded places as we were now an hour in and poor Mom was still outside. First chemo in, Mom at my side, quiet me.

Didn't have chat in me. This is how I do medical hard things: I hide inside and I turn off my thinking. I couldn't even come up with Boggle words. My Mom is fantastic, she has spent a lot of sickbed time with me and just roles with my moods. At one point she was trying to engage me and said, "but I was going I sing for you!" That caused me to laugh! So random! Seriously, so random! "If you sing I've Got A Mansion I'll throw this phone at you.... Reminds me of Grandpa M's funeral!" We had a good laugh. I loved my Grandpa dearly and I actually have all sorts of positive associations with that song and he and grandma singing it in their basement recording studio. They would record and then send 8mm tapes to missionaries in Bolivia! Way cool!

Anyway... The afternoon just rolled along without much ado. With about twenty minutes left in my chemo (2nd chemo in) I started feeling lightheaded, dizzy. As the chemo machine sang the little "I'm done" song, I started to fade. I could feel my colour drain, my body fading, my eyes closing... I was working hard to not pass out. Poor nurses, "she was doing great... What's going on..." It took about an hour and a bit to get some juice in me and cold compresses and eyes back to open and focusing. I hadn't eaten since 8am and so probably needed a sandwich to balance all the hydration! Bad Kristin, I know. But I am just not hungry and time just passes. Nurses and I agreed that I am going to set a timer to eat on a regular schedule. Also, one of the anti-nausea meds will make me ravenous w hunger so that should help!

Finally got home, plowed through a bowl of chili with rice (thank you to the friends who provided the dinners that I ate from!) and felt perked up. Until I took the anti-nausea meds... which make me nauseas. They did this morning, they did again tonight. Funny actually!

So, the day was pretty much as I expected, hoping the next few days are okay, too! I really put no expectations on the next days or weeks or months, a blessing that I acknowledge and and am thankful for.

Sidebar: The results of my blood work were very good, the nurse was very happy and commented that they were very good considering I was post-op! Thank you Lord!!! All those prayers for good blood counts and strong immune system and white blood cells... God heard and answered!!! Let's keep praying those numbers high! She said it is even possible to go through chemo with the numbers staying high: I know God is able! He whispered to me the other morning, "I'm bigger than this Kristin"... Again the message, trust me, I've got this. Thank you Lord! The other thing my numbers showed was that my one kidney, hustling to adjust to doing all the work by herself, is doing really well, too! Praise God!!!

And, my oncologist has actually split the one chemo into half today, half next week just to keep things easier on my kidney (that chemo is known to be hard on kidneys)... An answer to prayer for wisdom for my oncologist and medical team. So thankful. I am a thinker and a student and I really find rest in smart choices by the medical team... Who wouldn't! It's just reassuring, you know? So many silver linings in this day.

Feeling fairly nauseas now. Maybe a 4/10... I would take a Gravol if this was just an everyday day. I have an extra med to add against nausea that I'm thinking I will take if sleep doesn't help. No playing tough for this chick! Thankful for meds and the miracles that are medical science.

So, that was the day. I know so many of you were praying and loving me and my family through this day, thank you thank you thank you.

And away we go

chemo day

feeling small and quiet. big mountain before me. I say to this mountain "move" and it shall move.
Matthew 17:20

The night before chemo

Feelings

Up at 3am, coughing and lungs and hungry but can't think what to eat. Finally back to sleep at 6ish, awake at 10am. Feeling emotional. Tears this morning. Several people have commented that they are glad for me or happy or excited to see me start chemo. I understand the sentiment, that it is a show of support to get the chemo in and cancer out. I get that. But I don't feel that way. I feel resolved to go, get it done, there is hope, the chemo will work, the cure is coming... and sad, that today is "the last supper", the eve of "the next months are going to be hard work... It may be years". I don't know, I'm just feeling nervous and scared and like I am being pushed into solitary confinement. Shawn and I had big conversation this weekend about what our plan is if a kid comes home sick from school... Will they go, or me? Will we have a 12' rule that no one comes near mommy without a mask? What about church or other regular life things. We have a long list of questions to ask the chemo nurse, we don't want to be paranoid but we also acknowledge that kids coming home from school are like germ sponges in this "worst flu season". I don't know. Just feeling the feelings and realizing that part of it is just the morning wake-up-and-remember-that-cancer-is-here.

This past weekend was fantastic. Shawn and I met some dear friends for dinner out!!! Then Sunday was lunch at Mom and Dad's with the family. Sunday evening brought a visit with some long time friends who we haven't seen in awhile ... and it was like no time had passed. Connected. Fantastic!

Thank you for the comments and emails and notes that many of you have left. As the days wear on the alone-ness is sometimes harder to fight than I can easily muster against. I cherish knowing that I am connected with friends loving and praying around the world.

Chemo is 12:45 tomorrow.

Jesus Calling

Taken from Jan 12 Jesus Calling devotional:

Let Me prepare you for the day that stretches out before you. I know exactly what this day will contain, whereas you have only vague ideas about it. You would like to see a map, showing all the twists and turns of your journey. You’d feel more prepared if you could somehow visualize what is on the road ahead. However, there is a better way to be prepared for whatever you will encounter today: Spend quality time with Me.

I will not show you what is on the road ahead, but I will thoroughly equip you for the journey. My living Presence is your Companion each step of the way. Stay in continual communication with Me, whispering My Name whenever you need to redirect your thoughts. Thus, you can walk through this day with your focus on Me. My abiding Presence is the best road map available.

The Lord replied, “My Presence will go with you, and I will give you rest.”
—Exodus 33:14

“Remain in me, and I will remain in you. No branch can bear fruit by itself; it must remain in the vine. Neither can you bear fruit unless you remain in me. I am the vine; you are the branches. If a man remains in me and I in him, he will bear much fruit; apart from me you can do nothing. If anyone does not remain in me, he is like a branch that is thrown away and withers; such branches are picked up, thrown into the fire and burned. If you remain in me and my words remain in you, ask whatever you wish, and it will be given you.” John 15

The miracle of music

A certain song, or a song sung a certain way, can be such a mood changer. Tonight I am blessed to have received two incredibly special recordings by two incredibly special people... and peace and love and smiles were the miracle that accompanied these acts of kindness.  I encourage you to share in the comments the link to a song that you find particularly moving... or something that makes you happy or laugh or mellow or peaceful or sure or whatever.  With friends from all over the world I bet there will be some new and interesting songs we hear!!!  May we connect and share and bless each other in some way each day.

I have a boatload of songs on my playlists, here are a few that spring to mind tonight...as you can see, my taste is all over the place, I will spare you the Top 40 and rap that I enjoy.  Oooh, was watching Top 100 "1Hit Wnders" tonight and what a fun walk down memory lane that was!  Anyway, here are a few links for you, remember to share your in the comment section!

This song gets me moving, feeling empowered, lifts me up in a strut-your-stuff sort of way that I love:  Kelly Clarkson: Catch My Breath

This song calms me, this is my 'go to' song for hard moments:  Aaron Schust: For God So Loved The World

This song makes me feel especially romantic and lusty for my husband [wink]: Lady Antebellum: Need You Now

This song gets me pumped and ready to start the day... hmmm, as mornings are a fairly slow-moving thing these days, perhaps I need to get this one set as my alarm...who can resist: Hillsong Kids: This is the day

Sleepy and Dopey and Coughs

What a weird week it has been. My port is much better these eight days after insertion. For some reason the port, which is on the cancer shoulder side, has exacerbated the droning pain that the radiation had finally taken away but it is not nearly as bad... Sort of a dull burning. My lungs are worse these days, I would greatly appreciate prayers for healing and good breathing and calming of the coughing. When I wake and sit up it is about an hour of coughing and clearing my lungs. The coughing is actually to a full gag that panics me that I might actually throw up. So grateful that its only two or three big gags before that settles down. It's just strange. I am sleeping 11 and 12 hours as my "night", trusting my body is using those sleep hours for good!

Tonight I am finding myself very short-tempered. Eek. Not sure what's up, best to keep my mouth shut and myself on the sidelines. Emotions are up and down this week, for the most part I'm okay and not any one big panic or sad or angry or anything... In fact I feel fairly mellow so not sure where the random flows of tears come from. Wondering if I am having some flu shot symptoms with the tired and the achy and such. Who knows. Anything can be cancer or 40 or tired or life.

M is at a sleepover with a BFF and its just me and the menfolk. Friday TV for sure!

Chemo on Tuesday.

Got the call!!!

Chemo: Tuesday, 12:45 for one hour.

I am claiming quick victory that it is only a one hour drip! Chemo can range from 15 minutes to an eight hour day.

Thank you Lord for the miracles of medicine, the work that chemo will do, the healing that you are doing in my body. Thank you for the mental blessing of not waiting anymore for "the chemo call". Thank you that I got to drive today, that it feels kind of "normal" in this moment, that I am so incredibly loved and supported!!!

my new philosophy

"She who sports the port wins."

Seems fair, right?!  I gots to make full use of this situation and get my hubby taking care of himself.  That man puts everyone before himself and I'm sick of it! [wink]

I need a chair

Please pray that I get a chemo spot this week. I am still "the top of the list" but I need to get this started now. For my physical health and mental well-being. Please pray that someone gets gifted tickets to something awesome and shuffles their chemo one day over. Better yet, pray someone a miracle!

Hunkering down

Over the past few days I've noticed an ever increasing shift inwards.  I'm finding it harder to make polite conversation, I'm not replying to emails (gasp!) and I'm even just barely skimming through Faceboook (shock!).  I'm feeling myself getting more and more quiet, becoming smaller in personality, more inside my head.  Not sure how I feel about this... acceptance that this is part of the processing, understanding that my mind and emotions are playing catch-up to all the fear and change and loss of the past 70ish days, being slowed down by the stinging of the port in my neck and the wicked-sore muscles in my sharkbite region.  Afraid of letting this become a habit, the avoiding of life.  Cancer really is quite the head game.  Journalling big, lovely blog posts...and not able to get them onto the computer because the laptop is too heavy, or it's too much effort to turn it on, or... meh.

Very strange.  I still feel vibrant in myself.  I just feel... that everything is a whole lot of effort.  And also, I'm afraid of germs.  Really afraid.  I do not want to get a cold and end up in the hospital and die. 

I'm sure everything will all even out at some point.  I believe it!  ...don't tell me otherwise.

Right now I'm just feeling... adjusting to this new chapter and waiting for chemo and just...feeling like a salmon at the bottom of the waterfall, waiting for the rain upstream to wash down and give direction and pull to make the jump.

Rambling.

Feeling queasy the last two days.  Flu shot maybe?  Not sure.  My sharkbite has been really sore...the muscles and my ribs are all soooooo hurt-y.  And my cancer-y shoulder has been having the achy annoying pain again... I have enjoyed being painfree for about 2 weeks now and celebrating increased mobility each day.  Really feel the need for chiropractor but can't til the port settles.  And did I mention it's stingy?  That's probably stitches healing?  I don't know.  I can feel the tubing.  It's gross.  I will myself to not think about it several times a day to avoid gweebing way out.

Rambling.

Sleeping well at night.  6-8 hours, then coughing and clearing lungs...sometimes to the point of full gag which startles me and then I have to work through the mental image of suffocating to death.  Head games. Then I eat something ... and am super proud of myself for eating something... then make effort to interact with the kids as they wake up... then back to bed for a nap between 8 and 11 depending on the morning.  More head games... bad Kristin for going back to bed, you should shower and start your day, if you didn't lay around all day you wouldn't be so tired...  and the reality of I. am. tired.   Whatever.  It is what it is.

I feel mellow and I'm okay these days emotionally...though I do find myself very easily crying, or tears rolling down my cheeks and catching me off-guard.  Poor little salmon, just catching her breath before she makes the jump up over the waterfall.  [chuckle]

My littlest came down, all squishy and warm from his bed, and climbed up on me for a morning cuddle.  Best 2 minutes of my day already!!!  My kids are such a huge and awesome blessing, wow do I love them hard.

Last night I drove myself over to Keri and Kori's for a visit.  It was scary to drive after two months of not...but I did it.  And if I wasn't so nervous I would have been squealing with delight as I drove away independantly!!!!  FREEDOM!   Was awesome.  And today, I'm tired and happy to have a driver again.  Baby steps, right.  [smile]

Thankful for the dinners coming each night, and the motivation of good manners and a grateful heart that gets me off the couch and over to the door to connect.  I'm a people person and I don't want to lose that...the dinners really are so much more than 'food'... we are so touched that people would take groceries from their pantry, take time out of their day, make the drive over, send baking or bring a special treat or a card... and that minute or three at the door is a precious connection that brightens my day hugely and energizes me and brings smiles. 

Keep connecting with me... I need the extra motivation to not draw too much into myself right now as I figure out balance each day with whatever emotions and pains and worries and hopes and dreams come my way.  You are awesome!!!!

Have a great day!!!!
Kristin

Relaxin'

Good day. Friend stopped by, port is settling in, shoulder pain is back but manageable, even got out to drive and hang w my sisters. Now, watching tv w my hubby. Nice.

Bored and fabulous!

Today was the first day 'back to school' for the kiddos and 'back to work' for Daddy and 'home alone' for Mommy... and I was bored.  I don't like being here alone all day.  I don't actually prefer to be anywhere alone for the day...except maybe I'd try in Paris... not been to Paris yet.  My love language is definitely 'time spent'.  Anyway... what better opportunity to do some fancy nail art.  Santa brought these nail polish STICKERS for Christmas, how super fun and fancy-schmancy is that!!!  So, I got all gussied up...for my afternoon schnooze.  Cuz I'm fancy like that.   I'm sure my Dad appreciated my effort when he came to visit me this afternoon...thanks for moving the furniture for me, Dad!!! Love you Dad.

Please pray for my Mom, she is valiantly fighting a sinus infection.  We are in serious anti-germs mode at my house and I know it is heartbreaking to her to have to be away from me right now.  She is also my chemo buddy (along with Shawn) and so I super need her to get well quick as I am now at the top of the chemo list ... yay... kinda... yes... YAY!!!   Please, pray that she wakes up tomorrow feeling 100% delivered from any sinus or cold or flu symptoms.  Feel better, Mom.  I need you.  No pressure. Thank you.

Snippet

B, 8yrs: why do you have to have cancer?
Me: it just happens. I don't want it either. how do you feel about that?
B: I don't like it. I wish it would go away.
Me: me too.
C 6yrs: that's jut how God made it.
Me: God didn't make it. Remember in the Bible about Adam and Eve in the garden?
C: oh ya
Me: and God said don't eat the fruit from one tree but they did? Then sin came into the world.
C: God doesn't like cancer either.
Me: nope
B: [starts singing Sunday School Christmas pageant songs... his calm thing]

Herman

Last night was really rough.  Someone was idling in the cul de sac at 3am.  I woke up in pretty big discomfort.  Burning and pulling all around the port bandages area.  Not sure if that's the stitches or what.  The tubing is the worst part for sure.  Where it goes into the jugular vein... owee.  And I couldn't lay back, it hurt.  And I was very grumpy.  Bitchy is more accurate.  I was tired, couldn't sleep.  Hungry, nothing appeals or tastes good.  Needed pain meds, they make me gag.  After an hour Shawn finally got me settled and mellowed and meds in and laying down...and then I had to pee.  And then he got me settled again and another car came into the cul de sac.  His goal today: buying me ear plugs.  We live in a quiet cul de sac, but ... life goes on even if this Momma has cancer-worry-insomnia-crappy-night-discomfort issues.  [eye roll]   Really hoping Herman settles in as soon as today.  And... hooray, I get to have a shower tonight!!!

Family Flu Shot Day: Oi Vey!

Today we had "Family Flu Shots" day... oi.  We have not done flu shots before but the chemo nurse advised strongly and so we did.  Let me tell you, when we told the 8yrs and 6yrs...there was some weeping and gnashing of teeth.  Some of that whinging and ki-yi-ying and generally p-o-ed yelling happened the 15 minutes of freeway driving to the drug store that happened to have 5 shots left.  We got there, we bribed with candy, we filled out paperwork for all 5 (Daddy would have to be responsible to find his own flu shot some other time) and we started the process.

Oh. My. Word.

Hell hath no fury like... a 6yrs old pinned down in a never-taken-a-kid-for-shots Daddy's arms... oh my.  And the Mommy, well I'm on strict orders to "not exert yourself" for 48 hours post-port surgery.  I used my empathy, my reflecting, my instructing-Daddy-whilst-trying-to-calm-son, then my full-out Mommy-stern voice... poor, kind pharmacist commented, "I've had lots of upset kids, but this one is the worst" or something like that.  Way to go son, you've set the bar LOUDLY.

Daddy and I got all four kids through their shots, and then...  Mommy totally chickened out.  Like.  Completely.  I just could.not.submit.to.the.shot.  And... praises to God completely as He popped "there is a mist!!!" into my head.  And so I said, "Hey Daddy, why don't you take my shot and I'll take the mist?" and super compassionate Pharmacist, who knew our cancer situation, said, "Let me check the instructions for adults" to make sure it was okay for me or whatever it is they check... and came back with the mist. 

THANK YOU LORD FOR THE MIST!!!!!   It absorbs the minute it hits your nose, so even if you sneezed it out (which I didn't) it is already absorbed.  Um... hello... if you are afraid of needles, splurge and spend the $26 for the mist.  Easy-peasy!

Here is my new motto: if there is an "easiest" or "pain-less" version, I'm doing it.  Why spend extra energy on any thing that will freak me out.  Example, I have given my pharmacist a blanket rule (on my file) to give me the smallest version of any meds... I am having trouble with choking, coughing and gagging on pills especially and some meds are just difficult and so I delay taking them until too late (too much pain or whatever)... hello... as one kind mother-of-a-cancer-survivor shared with my sis... if the first thing doesn't work, ask for something else because there ARE options and don't waste energy where you don't need to.  Best advice, thank you... I feel released to not have to be tough in the area of meds and medicine.  Work smarter, not harder, right!?!! Right!

And so, we are all flu-fortified and they all enjoyed their fancy ice cream treat at the place that mixes gummy bears into cotton candy ice cream, I ate half a sandwich at the Tim Hrtons, and now we are resting.  I am not eating much.  Food is not appealing.  Shawn is becoming a nag.  I'm good with sipping things through a straw so warmed water and those yogurt drinks or smoothies are always a good option.

Herman (what I've named my port, in case you missed yesterday) is settling in but his long creepy rubber tubing tail is definitely an aggravation in my jugular vein if I move my neck, swallow, lift my chin or... stupid Kristin... bump the entire area of bandages.  Why the heck do I keep bumping that stupid area??!  Cuz I didn't have on my trusty scarf.  I am a huge fan of wrapping long, light, super wide scarves around my neck... I'm actually known among my friends for having quite the scarf collection.  LOL.  ANYWAY,  today I went without because I wanted to kids to SEE the bandages and REMEMBER not to hug aggressively or flop down next to me...and then I kept bumping my own owie.  Doh!  So... on went the safety scarf and I haven't bumped into myself in the last hour.  Yes... I'm a braniac.  That's me. 

Did you know that if you muck about and fiddle with the port it could flip upside down (hard plastic side up) and then it can't be used (cuz the squishy peirce-able... [shudder] side is not just under the skin).   Um... not touching that thing... it is sore.  Not unbearable but definitely still adjusting.  Apparently my body is growing tissue around it (which could make a Kristin FREAK about the one-day eventual removal of said port... but .... rainbows, unicorns, grape popsicles... squirrel... not thinking about that).... anyway.   Port is okay.  Tube thingy that goes up towards my shoulder and then around into my artery at the jugular and down towards my heart is hurty annoying but not killer painful.

And that's the update for tonight.

Love you, my BlogFriends.  I really do.  I appreciate you, your comments, your kindnesses, your prayers and your thoughts.   Thank you.
Kristin

Port: inserted

This was me about 10 minutes after waking up from my port insertion.  So glad it was over, so incredibly grateful that I slept through the procedure.  God is good, really really good, all the time!

I woke at 4am this morning (toilet) and then there were so many vehicles coming and going and running their engines to warm up from that point til about 7am that I could not sleep.  And my back was sore, and my nerves were a little high though not unwieldy.  And I finally fell asleep at about 8am and was awakened at 9am and then layed in bed watching tv til 10am because I just did not want to start this day.  Finally got motivated, got the kids motivated, got Shawn motivated and everyone into the van.  Got to Mom and Dad's to drop kids for the day, couldn't even make eye contact, the sheer effort to get myself willingly to the appointment was all I could do.  It seems silly to you maybe, but this is my process and there is definitely a pattern as I sort through emotions and realities of parenthood and logistics of four kids and a husband and the feelings of confusion, shock that this is really happening, knowing that I believe the port is the right choice and wondering why I'm so freaked about it, wondering if I will wake up claustrophobic with this thing permanently in me and beyond my control for months or even years.  All just too much.  I shut everything out.  It may look like I am in denial, I am not, I am filtering and processing in small chunks because all at once would send me to the heavy drugs and the psychiatric ward, I honestly couldn't handle it all in one swoop.

Got to the hospital a little early, tears flowing down my face, why did I bother trying to look less pathetic by adding mascara?  Shawn prayed.  Tears flowing down my face, my husband pleading to our Lord on my behalf, on our behalf, for our kids and our extended family and friends.

Got signed in, got sent over to Intervention Radiology.  Nurse met us at the door.  Me in a quiet voice, "I'm freaking out".  Her, "You're freaking out?  We'll take it nice and slow."  Got into the blue gown, once again.  Climbed into the bed, resisting the warm blanket because I wasn't ready to submit to the process yet.  Nurse came over to take my info, "Has anyone explained to you about the procedure?"  Me so quiet, "No, no one has told me anything, I don't know what's going on.  I am freaking out."

She will explain it, she will tell me what is happening, she explains that the port is a good thing and I will be so glad for it, that every nurse agrees they would have it, "but I've never had one..." that's always the qualifier than loses her a few points in my book.  "The last five people I spoke to said it was horrible... " I said with tears streaming as the doctor came to assess.  "Don't listen to hear-say, we have patients who don't even feel a thing...the worst part is the pinch of anesthetic...only as bad as the dentist..."  My thought, "It never hurts at my dentist..." and the doctor drops a point or two but I appreciate his effort.  Young guy, very nice, very patient to hear my concerns and explain the procedure.  And then we wait.  Two hours behind because of an emergency procedure.  I was praying for whoever that was.

Nice nurse turns the lights down, closes my curtains, brings more warm blankets and tells me to fall asleep.  Me, "I don't want to sleep yet, I want to sleep on the table..."  Her, "you will."

And then there is a bag of antibiotics added to my IV and the guy comes to wheel me out to the surgery room.  Kisses to Shawn, calm to me... nurses join us and start setting up the sterile stuff.  My nurse is here with meds, she explains that they will make me sleepy, dopey and happy... "Snow White is here," she says.  "I just want to sleep through it, that's my only goal for the day." Tears start, I can feel a big cry pushing to break forth, my nurse comes and tells me that she sees how strong I am, that I can do this, my mind reaches out to God's peace, I am able to reel in the emotions, still my body so as not to upset the work being done.  They create a tent, scary with a hole at my neck, she gives me a little tiny bit of Snow White to help me calm... the doctor enters, and I fall asleep.  I didn't feel even the pinching, burning of the freezing.  I woke up almost 2 hours later.  This photo was taken around 4pm... we left the hospital fifteen minutes later.

My neck feels tight and my upper chest where they punctured the juggler and also where they inserted the port.  At first I couldn't sit upright, happily it was just the bandage taped in a way that pulled.  Tonight I am feeling a little sore, not unbearable, definitely exhausted.  I am so grateful for your prayers.  I am so very incredibly thankful that God granted me sleep through the procedure.  I have named my port Herman.  The name came to me in the quiet hour before my surgery.  Seems like an invited guest rather than a threat.  The nurses thought that was funny and called it Herman during set up.   I really had a calm about me all morning.  I felt all my feelings, I processed through the information and where I was with it all.  The nurse commented to me three separate times that I seem like a strong woman, that she can see me processing things which is so excellent and so many people never get around to that part.  I appreciated her kind words, not taking away from my need to cry, but supporting that tears are part of the process and validating this huge thing that is cancer.   A hard day, but a good day.  So many silver linings that were just the air around us.

Port procedure

My 12:00 is delayed. IV in and waiting another hour. I'm ok. Tired but want to sleep on table so keeping eyes open. Nerves are managed in this moment.

nerves

sigh

Sitting here on the eve of another big dose of reality.  Not loving it.  Reality, in this case, bites.

I don't want the port.  Is it too late to change my mind?  Fear is irrational.  But it's fear.  And mostly I'm just grossed out about the whole thing.  Praying really hard that it's not as gross as I think it is going to be.  Can't believe what a total wuss I am being about something so minor.  I wasn't nearly as freaked out about my kidney surgery.  Maybe that's why I'm so freaked about this.  I don't want to be cut again.  I don't want another scar, or two.  I wasn't at all prepared for how hard post-op and recovery would be.  How could I be, everything happened so quickly and I'd never had surgery before.  When I go for procedures I tend to dissociate.  The room is like a sphere, round and gooey like a fish egg.  There is no noise, no air moving, no focus.  I put everything I can into focusing on the words of the hospital staff before me.  I am disconnected from my body, just me...just a face with words and thoughts.  I see my hands in my lap, fidgeting and wringing, I see my feet and the heavy shoes so far away.  Shawn is near but hard to see.  I am alone in the moment.  Somewhere in my heart I know that God is there but the responsibility to act on my behalf is fully on me...and I'm just working hard to not bolt running from the room.  Not scared, just not wanting to be there.  It's an impossible moment made possible because it just is what it is and it just has to be.

Tonight I have ...nervous energy.  Can't focus.  Mind keeps wandering and I just don't know what to do with myself.  I'm not scared.  Just...  not sure how I would define what I feel.

So tonight I will continue to ask for God to let His peace fall over me like flakes of snow fluttering down and blanketing everything with quiet.  I will pray that God is preparing the medical team for me with wisdom and excellence, that He will blanket the OR with peace and success and wisdom and discernment and quick and easy surgery and recovery.  And I just keep praying.  What else can I do.

sigh. shrug.  one more step to cancer-free.  that's good. sad face

Thankful

 Thankful for...

... friends who sat with me on the dark days after my diagnosis, who have sat with me since, who are texting and checking in, who leave meals in my freezer, who have cleaned my house even though I grumbled and insisted they shouldn't, who have prayed and petitioned on my behalf before God, who have connected with my husband to see if he needs any extra help, who have chauffeured me and carried my purse and coat cuz I can't, who have taken my kids under wing when I could not.  I could not imagine how much this journey would be less bearable if it weren't for all this constant kindness and tangible reminding of how much I am valued and loved and cared for.  Such a priceless gift.  My heart is bursting with love and gratefulness to each of you.  Thank you.  I am so just proud of how awesome you are... and so very proud of myself for having picked such an incredible and stellar group of friends over all these years.  So very glad God brought us together, looking forward to the laughs and silliness and shopping and giggles and food and fun and milestones that our friendship will keep bringing.

... meals in my freezer or delivered to my door, by item or by gift card... it is astounding to me that I can still not stand long enough to make a meal on my own.  Without the generosity and planning of so very many wonderful people my kids would have spent the last 62 dinners eating Cheerios and toast.  I had no idea how big an impact one meal could have.  I am honestly just blown away by the many, many meals that have been provided for us and I am so very grateful.  Shawn is also so very grateful because the last thing the poor guy wants to be doing is figuring out dinner while I am past out sleeping and the kids are clammering for his attention when he walks in the door at 6pm.  Thank you... so many of you drive clear across town... I am just humbled by your thoughtfulness.

... prayers of family and friends and strangers alike.  I covet the prayers, I am shored up by them, supported, hugged, cared for, encouraged, strengthened.  I am greedy for your prayers, please don't stop.  God is listening, He is answering.  The peace I have had these last weeks passes all understanding...that's God, that's Him answering your many prayers.  I am so grateful.

To each of you who have loved on me in any way... you may think 'oh, it's just a little thing' but to me, it is huge.  Thank you.

Patience

Today I am waiting for 'the phone call'... still on that cancellation list to start my chemo.  Still hoping that the booking clerks, in all their juggling amazingness, will find a way to squeeze me in with the 150 other patients that got bumped due to the stat holidays over Christmas and New Year.  I wasn't bumped, but because they were I am still waiting.  And that's okay. Did you know that every day there are 50 patients that go through the chemo room?  FIFTY!!!  And, likely, many of those dear ones have to drive a really long distance, no matter how sick or icky they feel, to get to their medicine.  I am so very grateful to live in a town with such a huge cancer center.  So thankful!

Each day that I wait to start chemo I am more recovered from my surgery and radiation.  That's how I'm looking at it... but I do jump every time the phone rings, scrambling to get to the call display before the kids do, hoping and fretting at once, wondering when the chemo room will call.

Practicing my patience... I am not a very patient patient.  [eye roll]  I do feel that my strength is renewing, every-so-slowly, each day I do feel closer to recovered than I did 7 weeks ago!!! [wink]

Isaiah 40:31
But those who wait on the LORD shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint. 

New King James version 

Some of my family members are even less patient patients than I am... pray peace for them as they wait for this show to 'get on the road', too!  I've said it before, I'll say it again... cancer came to our entire family on October 29th.  That's a lot of people whose years have been hijacked in some way or another.  I really struggle with feeling bad about that... not guilt so much, there is no way I even remotely 'did this'... but... it's just a lot of lives thrown off kilter.  Alternately, it's a lot of lives included on the adventure in God's greatness, right?!?!  RIGHT!  

I told son4 about the port and explained chemo to him... when I told him about the port he made a vomit-y face... that cracked me up!  Thanks kid, I feel a little that way myself, too!  Kids are good medicine!

New year.

A new year.  New. year.

The hiatus of last week has turned to the reality of what this new year will bring. 

My hope, my dream, my resolve, my pleading request... to be cancer free.  I don't want to be palliative.  I want to be curative.  When you come to the BC Cancer Agency you are either/or... curative meaning they can take out the cancer and you're fixed, palliative meaning we can't quick-cure you but our goal is quality of life including remission.  Remission is great and all, I want to be cured.

Woke up with cancer on my mind, weighing down my spirit. 01-01-13  Stood in the shower sobbing, no tears could break forth and give me that emotional cleanse that I needed.  A trend, crying in the shower.  I guess it's the alone with my thoughts, no kids or noises or interruptions.  Alone with my scars, alone with the smooth and beautiful skin that will soon be stabbed and threaded and scarred by a port.  Trying to make peace with the port.

The year feels hijacked.  I'm not overly emotional about it...it feels healthy-emotional, trying more so to wrap my head around it.  At least a piece of it.  Not sure whether I am to make peace with my captor ...I guess that's what remission will look like.  Or do I fight, even to the death.  I don't want to do that... what if I lose. 

My kids are upstairs wrestling on my bed.  It's the squeals and giggles one millisecond before someone gets hurt.  There's Daddy, separating the herd, one millisecond soon enough. 

Feeling really tired today.  January 1.  My resolution is to purpose more fun into our lives.  Like, stupid fun.  Like, I want to be the mom who puts silly toothpicks in her kids' sandwiches for school.  Jokes and notes and silliness.  And celebrating.  Not big and lavish but purposeful.  I was already feeling this desire before cancer came, now it is my one resolution for this new year.  Today that seems like an achievable resolution.  Anything else just pales in comparison to 'this is the year I need to beat cancer out of me... and submit to the medicine that can beat it out of me...and rest up and recover from work of getting cancer out of me'. 

Depressing post.  May you be insulated against my sad-overwhelm-ed-thinking-ness.  Being real.  Need you to keep praying.  I really rely on the knowledge that you are praying.  God hears.  God was heartbroken and crying right with me when I showered.  He loves me, He is sad when I am sad.  I am so glad to know this awesome God.  I want you to know Him, too. 

We are headed to my parents to play games and just hang out.  I'm exhausted.  I am motivated by the reality that chemo means I will be more susceptible to germs and will have to learn to be okay with missing stuff these next months.  I'm not missing out on seeing everyone today.

It is, indeed a HAPPY NEW YEAR... the year is still 365 days of potential and adventure and hopes and dreams and learnings and growings and laughter and joy and silly antics of my kids and love to be given and received.   I am anticipating chemo to start within the next three days.  My port insertion is Friday, I am silently freqked out about that...silent in that I feel peace, but I am so grossed out and aprehensive and claustrophobic and afraid they will have to dig around and I will be awake-ish and then it will be in me for a long time and and and.  The chemo is medicine, medicine is good, I will take my medicine because it will work.  I accept the fatigue ...as much as a girl can accept something she hasn't experienced yet... I trust the expensive anti-nausea meds will work.  I will relish the week 3/no chemo week.

Just feeling a heaviness today.  It's a new year and that is awesome... just hard to know that I'm going to have to be of courage and be brave and do hard things for a while yet.  I'd rather be doing other stuff. [weak smile]

May YOUR year be awesome!  May MY year be awesome!  May our families and friends have years full of joy and laughter, peace and love, adventure and smiles... I want that for all of us because a good time for all is just a good time for all of us!!! [big smile]

HAPPY NEW YEAR... welcome 2013... we look forward to your many silver linings and God's many blessings that He already has planned for us!!!
Kristin