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Blessing the Dust (Surprises Part IV)

There is this poem for Ash Wednesday called Blessing the Dust by Jan Richardson from her book called Circle of Grace. She talks about dust and what humans are made from. About how old stars from who knows what galaxy live in our bones. It mesmerizes me and I will post it at the end as her sorrow mixed with hope brings me to tears every time. It was just the thing to soothe my soul this past Ash Wednesday

Also, my own words are not very eloquent right now. There is good advice among writers to write from where you are healed not from where it is still raw and gaping. This thing about which I'm to share is still very raw and gaping which may puzzle you once you read it but there it is.

I saw my oncologist on Wednesday and got some shocking news that they are not recommending the next surgery/hot chemo treatment at this time (what! and yes I argued with her about it and my results for a half hour.) By some miracle my two new lesions they thought were starting baby tumors were benign. More than that all the mucin they sampled (from multiple places but there was a large sample size on my right ovary that was removed) was acellular. After my ovary surgery no one told me it was even a possibility that this could be the result (no one even explained to me the difference between acellular and epithelial mucin) and when they called to book my next oncologist appointment (apparently before all my results were in) I was told to ‘discuss your situation and surgery’.  The only surgery this oncologist does is cyto/hipec. I was told multiple times along the way by several different doctors that new lesions and mucin would mean cyto + hipec. No one told me that there was a chance all that mucin could be acellular instead of epithelial containing. And my CT scan and bloodwork I had done a few weeks after my last surgery came back clear. Anyway I am in MASSIVE shock and grateful to have been a surprise to my oncologist, but also to be fully honest still quite stressed and anxious. My brain feels very holey.

For the first 24 hours after I got the news all I could think about is that my doctor was wrong and that I should get another opinion, trying to get in with another appendix cancer specialist in Calgary. I’m feeling a bit of shame about not feeling all the joy and relief those who love me are feeling. But as someone who loves me said: after five months of some serious ups and downs, two surgeries and many more other minor procedures and tests and appointments it is not surprising my brain and body are having trouble shifting out of fight or flight mode and to give myself grace in that.

Now that it has settled in a few more hours and I’ve had some time to search on pubmed and at look current pathology guidelines (hello type J who deals with anxiety with an attempt at control) I do feel like I am moving more in the direction of accepting this news.

I already have my next scans booked for late September and will continue to have scans for a good many years as there is a 10-30% chance of reoccurance (if so at which point they would give me the cyto/hipec surgery I was expecting to have this spring) but for now they are considering me no evidence of disease (NED).

Now I need to rest and have some time to let my soul settle and breathe and think about what all this means after an insane five months. Also to continue with the healing process; body, mind and spirit.

But first I have to say thank you. I know not all of you believe in God but I do, so I am massively grateful to God's gifts to me in this which have not just been physical healing. Through all of this insane ride I have felt God's presence by my side, even when I feared for the worst I was comforted and loved.  And also thank you to all of you: I have been so blessed through this by other's thoughts, prayers (to all the complete strangers and people who don't know me well praying for me, thank you), healing energy, making me laugh, sending me encouraging messages, information, cards, food, flowers, balloons, and so much more. It is humbling to think about and brings me to tears of gratitude daily at how good all you people are. Truly. To all of you thank you. To the few of you who were witness to my not so graceful parts of this - thank you too for listening to me through snotty tears and rambling incoherent thoughts and anger on my really hard days and standing by my side anyway.

To all of you: Thank you for showing me all the stars blazing in your bones.

 

Blessing the Dust: A Blessing for Ash Wednesday

All those days you felt like dust, like dirt, as if all you had to do was turn your face toward the wind and be scattered to the four corners

or swept away by the smallest breath as insubstantial—

did you not know what the Holy One can do with dust?

This is the day we freely say we are scorched.

This is the hour we are marked by what has made it through the burning.

This is the moment we ask for the blessing that lives within the ancient ashes, that makes its home inside the soil of this sacred earth.

So let us be marked not for sorrow. And let us be marked not for shame. Let us be marked not for false humility or for thinking we are less than we are

but for claiming what God can do within the dust, within the dirt, within the stuff of which the world is made and the stars that blaze in our bones and the galaxies that spiral inside the smudge we bear.

—Jan Richardson from Circle of Grace

 

 

 

How are you?

The question I get asked most these days is 'how are you?' I understand, it is what I wonder about people too. I wonder what are you thinking about, what makes your soul sing, have you read anything good? Do you feel like you are living an authentic life, what is really hard right now, how is the weather affecting you and what makes you feel alive? You know, how are you? I'm not sure that is exactly what people mean when they ask me; they may mean something more like how are you physically feeling, or are you going to survive?

So here is my answer: even when you have cancer not much changes. Life goes on in all the regular, beautiful, everyday ways. My kids still wake up needing to eat and learn and be parented. Sometimes I can cherish every second and sometimes I'm just hanging in there until I get an hour with no one talking to me. Aaron and I are still married, we still need to connect with each other and pay our bills and do our jobs, we still love each other very much.

Normal things happen: we went to the symphony and my girls got the flu and we fold laundry and do math and watch soccer games and clean out the chicken coop. My sister had a baby on Valentine's Day, I can't wait to hold her, a miraculous reminder of things carrying on just as they should.

I still like to write and post things on instagram and be in nature and talk to my best friends and laugh and find beauty everyday. I'm tired because I'm often not sleeping and also, oh yeah, maybe the cancer, but otherwise, it is life pretty much as normal and I'm doing okay.

 

And here is also my answer: when you have cancer everything changes. It starts out with your heart being broken. It most likely will be re-broken many times along the way and you have to decide, after you mourn, to pick up from there and move on. It challenges every thought you have ever had about how things are, about how if you do enough, you will succeed, certainly at something as simple and straightforward as keeping yourself healthy.

It makes you look at your very own life and examine every part. Is this really what I want to be doing? Is this how I want to spend my days? Is this how I want to treat people? Is this really important? Important enough to trade my time for?

It makes you wonder, what is this here to teach me? What goodness will come from this?

Cancer makes you say everyday 'I am healing' and at first you only believe it metaphorically. But then with the gift of a magical unicorn lightbeam of a healer and the power of the holy spirit, you realized as you said it two days ago, for the first time, yes, you believe it. You believe it fully, deep in your soul. You are not just going to survive, this is actually healing you.

Cancer makes you wrestle with deciding which of those broken pieces of yourself are worth picking up and salvaging and which needed to be shed off and let go of a long time ago. 

And this too is okay.

 

 

Nitty-Gritty

As a continuation of my last post if you are interested here are the details as to my case - if this is way too much information please skip on - I just logistically need someplace to send people to as at this point I am not taking time to explain my diagnosis to everyone in an attempt to spend as much time healing and with my loved ones as possible. In October I had an appendectomy where they found a low grade appendicital neoplasm in my appendix, not appendicitis as anticipated. This is a type of tumor that spreads via mucin (think mucus) and unfortunately at the time of surgery my tumor had already ruptured my appendix exposing my entire abdominal cavity to the mucin. The surgeon also saw growth on my right ovary but left it in place, unsure as to how the biopsy would come back and also unsure about my reproductive history.

I immediately started (and continue to do) to see holistic practitioners and use many, many holistic type treatments in hopes it would stop any growth and kill any remaining cells. So for all my holistic minded support system please don't think that because I am pursuing onocological treatment I haven't sought out other options and supports. My goal is to live a regular length of life, watch my kids finish growing up and hopefully even hold my grandchildren one day so please know that is where I am operating from.

In November I met with both a gynecologist and oncological surgeon who both agreed that based on my biopsy my right ovary should be removed completely. If all they found during that surgery was the growth on my ovary and the biopsy came back matching the original I would be monitored very closely for at least ten years to make sure no new growths were forming but as far as immediate treatments that would be the end of the road. At that point in time I was worried that the cancer would return at some point but also very positive that at this time there would be no new growth found.

In early January I had a colonoscopy that was all clear which showed good healing on the inside of my colon on the surgery site so that was exceptionally good news.

January 18 I had my right ovary removed on very short (2 day) notice when I was still expecting another 4-8 week wait. My abdominal pain and nausea had been increasing and I was very positive about getting this surgery out of the way and putting this mess as behind me as possible and hopefully avoiding chemo and further surgeries. 

Unfortunately during surgery there were new lesions (growths) noted on my periteneal lining. This led to another few hard weeks of fear, anger, worry and sadness similar to the first time I learned my tumor wasn't benign. I didn't blog about it because I thought I would spare everyone reading about that all over again ;) If you didn't read it the first time it is the three posts labeled 'Surprises'.

Now I am waiting for another surgery called a cytoreductive surgery plus hyperthermic intraperitoneal chemotherapy (CRS/HIPEC) that is frankly, a doozy. Even on oncology sites (which we can all agree cancer patients are subject to some terrible surgeries) it is refered to as MOAS which stands for Mother of All Surgeries. So yes I am a scared about it. Yet I am very thankful it exists as it has only been used for the last decade. While it is not considered a 'cure' and isn't 100% effective, previously people with Appendix cancer were all considered terminal so overall I am beyond grateful to all the medical professionals who have spent their careers developing it and that my chances of five year survival are high (80% or so) if my surgeon considers my surgery 'complete'. Complete means that they were able to remove all visible evidence of the disease.

I don't have a date for this surgery yet but will update here when I find out. In the meantime if you are a praying/sending energy/light person I would love prayer for first and foremost obviously healing and that growth is stopped! Also prayer for accessing surgery at the perfect time for my case, that I am operated on by the best possible oncological surgeon for my case (there are two in Alberta, one here one in Calgary who perform this surgery), that my surgery can be considered complete, and that I do not have a reoccurance. Also for continuing to feel comfort and peace which even through all this craziness I can say totally truthfully I have felt. For this I am very grateful. Finally for reduced fear, stress and worry not just for me but also for those people who love me as well.

As far as practicals go until I have my next surgery we are kind of just life as much as usual as possible over here and we are doing okay. Emotionally, mentally and physically  there have been many ups and downs already. To say this has been the hardest thing I have done (and it's not done yet) is understating. We are taking it one day at a time trying to encourage and uplift, look for joy and look for hope. We are beyond grateful for all the love and suport we have gotten ❤️

 Picture because I still believe God made the world beautiful. 

Lent is coming

Lent is coming, a month away still but I was asked to contribute a devotional to my church for our Lenten devotional guide. The question asked was 'What is God doing in your life right now?' I almost backed out of writing it as my situation right now is so extreme but in the end decided that even if one other person needed to hear 'I'm not sure' with honesty it would be worth feeling exposed. I expressed my doubts to a friend and she in her wisdom answered 'Highlight reels are for facebook, not for building faith.'

So just in case you need to hear 'I'm not sure what all this is about and that's okay' here it is:

This fall I had an emergency appendectomy that looked textbook heading into surgery. Upon waking up I learned they had found an appendiceal tumor and also some growth on my ovary. Over the next months I was diagnosed, at age of 37, with a rare type of cancer that originates in the appendix.

With literally a one in a million situation occurring in my life, it has been hard to understand what good God intends to come from this. I have felt scared, for my kids, my husband, myself. I have felt angry. I have yelled at God and have cried many times. I think often about the woman who had the faith to reach out and touch Jesus’ cloak for healing and I ask daily for her faith, her certainty in Jesus’ goodness and mercy. Truthfully most days I’m more like an overtired toddler having a breakdown, clinging to Jesus’ leg while he hauls me around. It’s okay I know he doesn’t mind.

It feels vulnerable as a lifelong believer, to admit here, that other than feeling broken down and pushed to my limit, I’m not sure how God is using this.  This too is okay; God is big enough for my uncertainty.  I know that being broken down can lead to greater trust, greater faith, more reliance on God and I try to lean into those promises.

One thing I can say with certainty is I have always felt God’s presence holding me - through every test, all the waiting, the surgeries. Even though I’m not sure where this is headed, I can sometimes see this is all that matters: God is with me, God loves me, and God is good.

New Years and New Words

Yesterday our whole family wrote down our top ten list from the past year. We have done a family list for five or so years now, we stole the idea from one of our friends all those years back, but this was the first year everyone, even Haven could write their own down. Some things made all of our lists, our new (to us) hot tub, some aspect of our amazing summer vacation to the west coast, the same with our trip to Hawaii last March. Swimming with a pod of wild dolphins is a pretty incredible event for a ten and eight year old to check off their bucket lists. All of my kids have some of their daddies love for adventure in them so cliff diving made all of the kiddos lists and so did doing some pretty challenging hikes. Also some aspect of regular everyday life: being homeschooled, working in the garden, cooking, reading books, each a little different but something ordinary made each list.

At times it feels like 2016 will always be remembered as the year I was diagnosed with cancer and that 2017 will always be the year I deal with the treatment. Yet I know that isn't so. 2016 was the year I found out I had cancer, yes but it was also the year we had the most perfect Christmas and hiked into a volcano. It was the year we started Anahola Board Co in earnest and it was the year Aaron moved his office to home and after covering two territories for almost a year, worked regular hours. Thus we had more down time and more sanity, we had forgotten how comparably easy it is for him to work only one job.

2016 was the year everyone could ski and swim and paddleboard and hike and bike well. It was a year of watching my not baby, babies grow and live, seeing more of who they are emerge, and let me tell you that is one of my most favourite things in existence.

It was the year we had so many full and rich days at home, just living, and talking, and being together, learning, pursuing our passions. It was a year that as parents we got to see our kids thrive at what they love and also push themselves at things that don't come so easily. It was a year we tried to do the same for ourselves.

It was a year of folding laundry and drinking coffee or tea, while the other person cooks (I'm laundry, Aaron's cooking in case you were wondering) and continuing to work on the home we love out here in the country, building a new deck and growing more flowers, mowing the grass and feeding chickens. It was a year of family and friends, laughing and crying. It was a year of many memories.

2016 was good. At times it was exceptionally challenging, not just in our own little blessed life here but obviously also in the world at large where there were much bigger crises than one called cancer. But despite all of this, there was love and it was good.

And now it is 2017. I'm a person who loves resolutions and intentions and one words and all that jam. Perhaps no year has taught me we can do all of that and still have so little control than 2016. Also, perhaps no year has taught me that we can do all of that and it can give us comfort in ways we never expected.

Although I never blogged about it, my words for 2016 were 'It is well with my soul'. The words come from this song.

'When peace, like a river, attendeth my way, When sorrows like sea billows roll; Whatever my lot, Thou hast taught me to say, It is well, it is well with my soul.'

They were in the center of my vision board for 2016 and I can't really explain why at the time, except it was spoken to my soul and so there it went. I cannot tell you how many times looking up at those words helped me this year.

This year I'm keeping it simplish as specific plans are a little more up in the air. My word is 'nurture' and my goals are as follows:

  1. Love well: God, my people, those around me in my own community and the world, myself
  2. Kick cancers behind and enter summer of 2017 (medical timelines permitting) cancer free
  3. Spread some peace in the world
  4. Being open to whatever else comes my way; while praying this involves more jumping off things into water, sunshine and seeing all the miracles of everyday life.

2017 I don't know fully what to expect but I know this: there will be love and it will be good.

Happy New Year and lots of love from us

 

 

 

 

 

Surprises

Life is full of surprises. Some are the best things you could have never imagined like a vivacious daughter named Haven-Kate and eighteen years of partnership and love with a small town boy from Northern Alberta. Things like how much you ended up loving being a mother and how you finally came to peace with needing to write. Things like a small handful of women friends who you love like your very own sister and who love you back better than you ever knew women could.

Some surprises are different, like waking up from an emergency appendectomy to hear they found a tumor and also some things on your ovary. Then over the next while learning that there is a seemingly massive grey area between outright benign and outright malignant. That 'precancer' is a very real thing and who actually knew?

So many are bittersweet. Like learning to trust just the tiniest amount and how to wait well as medical people sort out their opinion of what is happening. Like how to find hope. Surprises like learning your body is a vital part of you and not just a tool. I could write much more on that. Surprises like taking help and telling your real life people what a mess you are.

These are surprises that serve well and you wish you didn't need a crisis to learn them better.

Then there are the just plain ugly surprises, like how badly you want to be well, because there is real shit to do in this world and so things like cancer and surgeries should fuck off so you can get on with it. And also you don't want to worry so, so much about not being here to see your babies grow all the way up.

Some are perhaps predictable like how even though the world seems to be such a mess you still see God's beloved everywhere getting on with doing the next right thing and loving their people so, so well.

Predictable like how even if you aren't sure how this (or anything) will specifically turn out you can still believe - God is good, God is good, All the time God is good.

Read Surprises Part II here

Summer flow

July for us was full of sports and camps and in most ways our days were much more on par with a school schedule than they were a summer schedule. We packed lunches and had multiple pick ups and drop offs at multiple places on any given day. We hurried to bed after getting home from evening practice (after the day training or camp) because we had to get up early the next day. We did lots of laundry and driving and ate a lot of take out and spent not much time at home. I was pretty tired by the end of this and was needing a break and summer vacation of my own. We turned down a few more options for activities for the kids because I wanted some weeks where we didn't have to be certain places at certain times. I strongly believe in allowing my kids to be their own selves and pursue their own passions but I also strongly believe in family connection and periods of rest.

So we had a few weeks to just hang out at home before we left on our family camping trip. We didn't go anywhere much except for occasional visits to the outdoor pool and the library and biking in the river valley. We didn't do much besides book reading and taking care of the garden and yard and eating meals outside together on the deck.

We camped in the mountains with Aarons's family with zero cell service and the kids played and fished and whittled while the grown ups detoxed from our smart phones. 

My parents came to visit and we played games and watched Olympics and slept in and ate a copious amount of delicious peaches fresh from their orchard. 

Summer is my very favourite and it is home to some precious childhood memories. I remember lazy mornings and lots of time to read and bike and swim and really do whatever you want to a certain extent. I remember camping trips and bare feet and ice cream and zero urgency. 

As my kids get older and their worlds continue to expand I want to allow that for my family for at least a few windows of time a year.  Time for us all to fully relax and settle and just be. Time for everyone to strengthen connections. Time to get good and bored enough to discover something about yourself or your family or life or love that you didn’t know before.

I worked with the kids

I wrote this post almost four years ago and never published it. Today while reading through my drafts I found it and didn't even remember writing it or why (unlike most of my other drafts which were pretty terrible) I didn't publish it. My best guess is I wanted something more poignant and was dissatisfied with the ending. Four years later it speaks to me in ways I couldn't have imagined then; about change and progress and beauty. About who I am . Perhaps just as important I want to remember that day, that season when my oldest was seven and I still had a preschooler and a baby and how lovely life was. And how lovely life is.

So here it is:

October 2012

 

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I worked with the kids much of the day splitting and stacking our wood mountain. We don't have to heat our house with wood (we have a gas furnace) but burning a fire in the stove on winter days adds a different sort of cozy to our house. So days when we are home in the fall and winter we keep a toasty fire burning. (And I love that burning deadfall reduces our carbon footprint.) It is that time of year for us when we are finishing all the outdoor jobs. Last weekend Aaron finished the new chicken coop and run, we dug up the carrots and beets from the garden and raked all the leaves to save for mulch for next summer's garden. We are getting everything ready for winter. Today Aaron was tiling our backsplash in the kitchen, just one more step in our long list of our do it ourselves kitchen renno.

IMG_1412

We love to spend some days like this and it is one of the reasons we moved to the country. Real, hard work that leaves you tired in a good way and with a sense of accomplishment that can't be gained any other way. Wood to burn over the winter, something concrete. Seven year old boys who help the most and feel really proud over their accomplishments in this real task, so unlike a video game or book. Noticing he grew so much since we did this job last fall that he could reach all the way to the top of the wood pile this year, remembering that last year he couldn't do the top four rows. This year he is strong enough to work the wood splitter.

Then there was the tile fixed to the previously blank (and dirty) wall. Haven-Kate when she saw Aaron's results said 'You made the kitchen beautiful daddy.' (Yes, she is only just two.) She was filled with surprise and awe at the change of what had happened while we were outside.

On days like today I am thankful for that wood from our own forest, for the food from our own garden, for the work my husband did on the house himself. For how everyone helped and felt proud to contribute. So often it feels like our life is so the same, when I am longing to make changes, but days like today I can see the differences. On days like today I am thankful for progress.

IMG_1454

(Also I have never once regretted taking too many pictures of my family in regular old daily life action. But I have regretted taking too few. Time to get out my real camera again.)

 

 

Summer is for...

My husband built me a new desk as one of the final projects in our house renovation. It sits right in front of a window overlooking one of the original apple trees on our forty year old property. Two weeks ago the tree started to bloom. It is a stunning thing - it looks gorgeous yes, but more than that it is the smell - delicate and sweet. When you stand under it you can feel the way the whole tree is absolutely alive with hundreds of bees buzzing among the blossoms. Apple Blossoms

This picture isn't from this year. I kept meaning to get a shot but didn't get my camera out in time. A rain storm we really needed washed them away before I anticipated in the midst of an overfilled week. This picture isn't from last year either because last year I was depressed and reeling from death. It's a quick one I snapped on my phone from the year before and all three of my kiddos are there, enjoying the gift of the blooms and the rain showers, tinier than it seems they ever were.

Two years can go by just like that. I've been told and I've seen it myself, the truth that days (especially if they are dark) can drag on and on and on. Yet somehow I was just rocking my last baby under the stars and now she is about to be five.

I haven't written much here the past year but it feels like it is time again. Time to bring some presence back to this place where I like to reflect about love and life and God and belovedness.

One way I'm going to ease myself in without feeling a need to be too serious or too wordy is a summer series. I'm calling it 'Summer is for...'  Just a photo or two with a few words. A chance to capture a few moments of gratitude and a few memories for the future hopefully once a week or so because summer is for savouring.

Summer is for biking in the middle of the day under gorgeous skies just because it is fun and we have nothing else to do.

Blue Sky Biking

Summer is for reading bedtime stories in the gazebo while the sun goes down.

Summer is for little girls with pink toenails.

Gazebo Reading

Summer is for new life.

(If you blog or instagram I'd love to see what you are using your summer for too.)

Hope

Emily Dickinson wrote: "Hope is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -"

Today is the first Sunday of advent in my faith tradition. Advent is thought of as a time to spend preparing ourselves for the birth of Jesus - the four weeks before Christmas. It's a time of new beginning. Each week has a word associated with it and the first week is always hope.

For a few months I've been listening most days to this podcast called Pray As You Go. It's not for everyone (in many season's it wouldn't have been for me) but right now the contemplative, liturgical style is giving me peace and connection. It always has the same format: song, scripture reading, questions for contemplating, scripture reading again, song and benediction.

This morning's podcast for the first Sunday in advent started with a traditional song asking for Jesus coming and calling on Jesus during the hard and dark times in life. The reading was Mark 13:33-37 which is a parable about being awake not asleep when Jesus comes. They had us ponder what kind of a year we have had. What stands out. What does Jesus want me to wake up to? What do I need more of and what do I need less of?

When I thought about what stood out to me this year the words the words came fast: depression, death, injustice, anxiety, survival, coping, irritability. Ambivalence. Heaviness.

All this to say - I disagree with Ms. Dickinson. Hope has feathers but it's singing can also be stopped.

I haven't written much here because depression being new to me took me months to figure out and then several more months where I was trying to dig myself out and recover. Months where I mostly felt myself but had a few low periods again too. And let's face it, it's hard for me to be vulnerable in my day to day life, never mind on the internet.

But it's advent and I believe in hope, even when I can't feel it beating or singing. I'm questing for hope this week as part of my advent pondering. And I'm writing about depression linked with my advent journey because this year I can't separate the two.

'The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under it's roof.' Barbara Kingsolver, Animal Dreams