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

 

 

 

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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.

 

 

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So…

(Originally written for facebook)

I’ve got some not awesome news and that is that I have cancer. I haven’t been very public about this yet as I wasn’t sure until recently where this was headed (and hoping it would just be a little blip) so I wasn’t feeling the desire to make it ‘facebook public’ so to speak. The world feels a little crazy right now and the last thing I would want to do is add to people’s feelings of overwhelm or take away from anything else currently going on. Instead my intention is to hopefully increase compassion and connection for whatever is going on in your own life. I tend to have a lot of thoughts about this right now so if you are interested here are some of them.

As it has become apparent this won’t be the little blip I hoped, I still debated about keeping this very quiet and asking people not to share but there were two issues with that. The first very practical one is my husband is not a private person and a part of how he lives is being very open. Therefore I want to be somewhat open here too so people who know both of us aren’t only hearing things from him and people who I am close to but he isn’t aren’t left in the dark.

The second issue is that we live in an interesting time of facebook and instagram and all other sorts of social media. Overall truly I love social media – often I think it spreads joy and hope and connection and provides a place to get some empathy or learn about something new, support a cause you are passionate about or heck, even just good suggestions for what to read next.

However, I am getting closer to forty and as I have aged this has become a life truth: hard things happen to everyone. Everyone you know has either recently had or is having or will in the future be having a hard time. This is just a part of life, there aren’t any exceptions I have observed, just as I believe joyful things happen to everyone as well, if we can have the eyes to see them.

Now social media doesn’t always make it look that way because hard things are often very private, as private or more private than the things that bring us the utmost joy. Here is why: perhaps your hard time has to do with your child or your partner or your sibling. Perhaps it has to do with finances or health issues we find embarrassment around or our childhoods. Maybe it is something you feel shame about so isn’t safe to put out there for everyone’s input. These are things we can talk to our most inner circle about but they are not things most of us talk about online. Because they aren’t just ours to tell and most of the people in our online worlds don’t need to be privy to the details. The details cannot make sense outside of a close relationship context or it just simply isn’t a safe subject to open up. Maybe we think that because our hard times seem easy compared to others they don’t count so we keep quiet. This of course is utter crap, hardness is not a contest and empathy, as a woman I love says, is not a nine piece pie. There is enough to go around. So because of our respect and concern for others involved (including our very own selves) in our hard stories, they often don’t show up on social media and we are stuck in a place where it may appear that so few of us are actually ever having hard times.

In fact the hard things can sometimes be so absent from social media that we can sometimes start to think we are the only ones going through struggles or at least the struggles that aren’t on the nightly news. We can sometimes even start to feel jealous and angry and resentful of people who look like they have it all together.

So I decided to share as a reminder that whether it is out there on social media or not, if you are having a hard time you are not alone. You are loved. You are cared for. I hope you have people taking good care of you. You are not the only one with shit blowing up everywhere and living with fear and worry alongside any joy and hope. I know you care about things outside yourself and want to change the world to be a better place, no matter how much energy you have to give to that right now or not.

If you are not having a hard time right at this very instant, I hope this will be a reminder to be compassionate to others because we can’t be sure of what they have going on. A reminder that while lots of us have good lives, none of us have perfect lives. A reminder to be gracious to others because we are all still learning and stress often causes us to not do things to the standard which we would prefer. To be happy and celebrate as much as possible other’s healthy boundaries or joys or celebrations that they do share because who knows what else they have gone through, aside from what you are seeing.

As for me I have appendix cancer (one in a million so likely you haven’t heard of it or known anyone with it before.) If you are interested in the more nitty gritty details of that I wrote a post of the history and where things are at currently on my blog: http://www.leahcolbeck.com  Otherwise I’m super grateful that I know so many people who believe in taking good care of the people around them – whether we know of any hardship they may be having or not because this is what the world needs. I will also say in advance I appreciate all the love and prayers and am so thankful for that.


Photo because I still believe God made this world so beautiful and full of love.

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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. 

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