Testing, Testing, 1-2-3

I suppose it goes without saying that with a cancer diagnosis comes a lot of medical tests. So many tests, in fact, that one tends to lose track. When people who need to know ask, I refer them to my medical scribe, er husband, if he’s present, and if he’s not, I say something like “You’ll have to look that up. I can’t remember all of it.” In the latter case, I’m pinning my hopes on there being a reliable detailing of the pokes and scopes and imaging this body of mine has been subject to, floating around out there in the ether, able to be captured by a few taps on a keyboard. Whether or not this is, in fact, the case, those asking have always been satisfied with my redirection, as it were.

Tomorrow is Testing Day. A colonoscopy in fact. The method by which I was first diagnosed more than 12 years ago.

Over the past few weeks I’ve been asked by my therapist, my psychiatrist, and my physical therapist, as well as the occasional friend or family member, if I’m nervous or afraid. And every time my answer has been an almost flippant, “no, I don’t think so”, accompanied by a casual shoulder shrug, mine not theirs.

Well, I’m here to say: Wrong Answer. 

I am (and likely have been, since my “procedure” was scheduled a month or so ago) all of the above and more. I’m nervous, afraid, anxious, terrified, filled with dread, etc. ad infinitum. 

But here’s the thing, I really thought I was fine. Taking it all in stride.

My body has been telling me otherwise and I’ve been, for the most part, ignoring those messages. Until I couldn’t. Yesterday I could no longer stem the flood; my finger in the hole in the dike was no longer adequate.

I felt the pressure building throughout the day (what I should be saying is “throughout the weeks”), but I am just so darn good at ignoring, repressing, BS-ing and basically going about life as if there wasn’t this THING looming on the not so distant horizon.

It’s not pretty, the way this plays out for me. I’ll say up front it involves a lot of swearing and self-pity.

The first red-flag symptom for me is my breath. I have this thing, I’ve had it for 40 years, the World Wide Web calls it Hyperventilation Syndrome and in a nutshell, it feels like I can’t breathe. Alarm bells going off in my brain, “Not Enough Air!!” even though there’s plenty. It doesn’t happen all the time but when it does it can last for months and it’s exhausting. If not due to a serious illness or injury, hyperventilating is almost always holding hands with anxiety. Hmm.

Second red flag: overwhelm. As in, “I have too much to get done”, and/ or, “life is too much for me”. I find it interesting as well as inconvenient that, in DBT (Dialectical Behavior Therapy), overwhelm is included in the list of synonyms for anxiety. Surprise, surprise.

By early evening I was waist deep in compulsive behaviors and, as a result, filled with self-loathing. By bedtime I found myself envious of others and, wanting, more than anything, a life different than the one I have. I warned you, not pretty.

But I’m told that all of it makes sense. To feel fear and not want to. To be reminded- again- that this disease has not only significantly changed my life, but that it can (and has) come back; that, like it or not, a certain amount of vigilance is required. Because, I’m told, people want me here.

This tangle of thoughts and emotion brings me here to this page, attempting to distill life’s complexities down to the reduction of words. And I find I don’t know how to end this… I think, because, like the medical testing, maybe there isn’t an end. That’s not something I can wrap up in some neat little word package. So, 

The End.

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On Reading and Writing

Yesterday I had the privilege of taking a poetry class. And, while it was fun and full of inspiration, I was also reminded of how much I don’t know about the writing craft. The teacher did state, “in order to be better writers, we have to read A LOT.” So there’s one thing I’m doing right!

I’ve loved to read for as long as I can remember. Reading entertains, teaches, creates connection, and it can provide a healthy distraction from the often harsh reality called “Life”.

Today I’d like to share a short list of books I’ve enjoyed recently, and why. These books have enabled me to broaden my horizons, learn and, hopefully, grow.

So without further ado, and in no particular order, here’s the list:

Plant Dreaming Deep by May Sarton. I could say a lot about Ms. Sarton, because she was certainly an interesting person. But in order to keep this post to a practical length, I’ll be somewhat brief. May (Eleanore Marie) was a prolific writer of poetry, fiction and memoir. Possibly what strikes me most about her writing in Plant Dreaming Deep, which is one of several of May’s published journals, is that it’s so, well, interesting. Her writing about writing, gardening, entertaining and being entertained- basically the mundane things of her day-to-day existence, really held my interest and I frequently found myself reading “just one more page.”

Mink River by Brian Doyle. As a reader of The Sun magazine, I became familiar with Mr. Doyle’s work in the form of essay and short story. And I liked what I read. Mink River is rich prose! It is a story of a fictional coastal town in Oregon that is at once realistic and fantastical. I found myself frequently rereading sections, in an effort to take in all the lyrical beauty of his writing. Brian was the master of the short story as well as a deep and often unconventional thinker. Unfortunately, Mr. Doyle was diagnosed with a brain tumor and died within a year of diagnosis. He was 60 years old. Before his diagnosis he wrote “Cancer is to be endured, that’s all”. I couldn’t agree more.

In The Realm of Hungry Ghosts by Gabor Mate. I could go on and on about this book and it’s author, but will, again, attempt to be brief. This man has done hard things well. No, he has done very hard things very well. Hungry Ghosts is a book about addiction that somehow applies to all of us, in my opinion anyway. Dr. Mate spent a few decades in the Portland District in Vancouver B.C.;  an area rife with poverty, addiction and mental illness. His writing tells the hard hitting truth with incredible empathy. He levels the field as he confides about his own addictions (to obsessive purchasing of classical music CDs, among other things). I had the amazing opportunity to hear Dr. Mate speak last year at an addictions conference and was impressed with his seemingly effortless wisdom, but most of all with his humility.

Here If You Need Me by Kate Braestrup. Kate is a phenomenal writer whose memoir certainly held my attention. Her husband Drew, a trooper with the Maine State Police had big plans for a second career. After his retirement from the force he would attend seminary and become a minister. Meanwhile, Kate planned to combine her writing with being a minister’s wife. Then one morning, Drew was killed instantly when a fully loaded box truck smashed into the driver’s side of his cruiser. Kate was left with their four young children (ages 3 through 9) and enough grief to last a lifetime. Then, she makes the extraordinary decision to live out Drew’s dream. She attends seminary and becomes an ordained Unitarian Universalist minister and is hired as chaplain to the Maine Warden Service. One of my favorite lines from the book is: “I can’t make those two realities- what I’ve lost and what I’ve found- fit together in some tidy pattern of divine causality. I just have to hold them on the one hand and on the other, just like that.” I have eager plans to read more of Ms. Braestrups’ work!

So this, my last book to tell you about, blew me away. And I’m not exaggerating. It is (drumroll) Tattoos On The Heart by Gregory Boyle. Boyle is a Jesuit priest and his diocese is Dolores Mission located in what was, at the time, the “gang capital of the world” in East Los Angeles. Boyle’s amazing book recounts over 20 years of living with and loving gang members and their families from the barrio. “G”, as he is called by all who know and love him, writes of both the hilarious and the heartbreaking. His stories had me laughing and crying, often at the same time. I was amazed again and again, at the depth of compassion, grace and unconditional love “G” pours on his parishioners. But please don’t hear me say he paints a prettied up picture of himself or the ministry. He is, above all, painstakingly honest. If you are breathing, you need to read this book! Actually, I highly recommend that you listen to Father Boyle read it (it’s available on Audible) because his voice adds exponentially to the telling. Also, he knows Spanish and I don’t!

Happy reading!

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Praying

I’ve started praying again, thanks to a friend’s gentle encouragement. Mostly I just recite a list of names, offering them into the air, humbly asking for…

There’s the rub, I’m not sure what it is I’m asking for. 

Help, I guess. Maybe it’s okay for it to be that simple. And to continually remind myself that I don’t know what help looks like.

I prayed for almost 50 years and then I stopped. I just couldn’t make it fit: all my asking with all the chaos and pain around me. In me.

In fact, it seemed the more I prayed, the worse things got. So I stopped. Because it felt futile and more than just a little disappointing.

I had been taught that “prayer changes things”. That such change could be wrought if one just prayed often enough, long enough, and in the right way. 

C.S. Lewis said something along the lines of “I pray because I don’t know what else to do.” Even as I write (my paraphrase of) his words, my eyes fill. Because, yes, me too.

So here I am, invoking the name of Jesus over and around and through my simple list of names. No idea, really, if it makes any difference. No expectation of things changing. Certainly no sense of hope in a specific outcome. I try, again, to let go of it all: difference, change, outcome. I try, again, to hold onto just one thing: hope.

Because I don’t know what else to do.

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Awareness Month

It’s October. Pink ribbon month. But no, that’s not my story.

Are there ribbons for colorectal cancer? I should know, but I don’t. 

Earlier this month, I received an email from a blog I follow, informing me that it was World Ostomy Day. “Yay” I thought. Then my almost-nurse-daughter texts, asking “Did you know it’s Ostomy Awareness Month?” Kind of. 

This is a subject I mostly keep quiet about. It’s often easier to talk openly about my journey with mental illness, and that’s HARD to talk about! Because stigma, still.

So why my reticence for this particular subject? Well, I shared my story once and it was met with a comment of disgust. One person, one time. More recently I attended a half-day seminar relating to gynecological cancers and heard the subject shared by two different individuals, again, with disgust.

Then there are the anti-smoking ads. The ads in the US were rescinded after The United Ostomy Association of America responded with anger and cried “discrimination”; understandably since many of us with ostomies -perhaps most- have not smoked. Therefore, we’d rather not be the literal poster child for anti-smoking campaigns. I believe the ads in Canada are still running, with the hope that a “disgusting” picture of a full ostomy bag will convince the youth of that country to refrain from cigarettes. Maybe it will. And maybe it’s worth it if it does.

But it makes me uncomfortable. It has been suggested to me that my uneasiness about the ads stems directly from my difficulty in accepting my ownership of an osotmy. Perhaps.

Something I’ve learned is, in this culture, we don’t like to talk about poop. It seems the public is much more at ease discussing any other topic about the human body.

Another thing I’ve added to my “things I thought I’d never need to know” collection: people with Inflammatory Bowel Disease (think Crohns and Ulcerative Colitis) willingly accept their ostomies because surgery has, in a large sense, given them their lives back. However, those whose ostomies are placed because of cancer or as the result of an emergency surgery, are known to struggle  accepting this new way of digesting food and doing life. The latter has certainly been true for me.

A struggle. Perhaps in the future I will write more about the challenge of living with an ostomy. Perhaps.

For now (assuming I publish this post), I will continue on this path of sharing my real life (mostly) without glossing over the hard realities therein .

Thank you for reading this. I feel, somehow, apologetic for writing it. The text feels stilted, awkward even. Yet, perhaps what you’ve read here will serve in some way.

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Some Days Are Just Hard

I’ve been dealing with some “cancer and treatment side effects” for the last 2 years and this past summer was particularly challenging. Gradually, my life was becoming defined, more and more, by pain. August and September were brimming with appointments; efforts to stem this tide that wanted to take over my body. And I do think there has been progress. But in the past 4 days I have experienced what I surmise to be setbacks.

Today, those setbacks have me moody and sullen. Fortunately, there’s no one around to enjoy the pleasure of my company! 

So, what brings me here, to this page, writing about my woes? I guess I want to remind myself that I am not alone in this, and I want to remind you, reader, that you are not alone in whatever challenges life has brought your way. 

I have come to believe that in shared suffering, in the shared suffering of humanity, we find connection and community. And that gives me hope, even on bleak days like today. This is why I choose to show up on this blog with all the authenticity I can conjure. That, and I’m tired of trying to pretend I’ve got a handle on things. I don’t.

So I will take the next step. I will show up for my appointments. I will treat myself kindly. Because some days are just hard.

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Indonesia

What words?

Such devastation, death, despair. My heart hurts. The pain and suffering in the world seems too hard to bear. What can we, what should we do? No, what can I, what should I do?

There’s no simple answer of course. That seems to be the way of things. 

The things that come to mind, those things I can do, seem so inadequate, trite almost. Yet I will continue to act when and where I can and trust that it all matters. Trust that every kind word and smile and act and gesture does indeed make a difference. Trust that every loving thought and each heartfelt prayer counts. Because, if not, then I too must give way to despair. And that I refuse to do.

So here, humbly, I will list a few things on my heart’s “to do” list:

Love those I’ve been given to love. No matter what.

Listen, intentionally, with my heart.

Stay present (to me this means, hang in there without trying to fix).

Share my authentic self with others. It’s beyond time to drop the pretense and find connection in our common human struggles.

Be kind. I know we hear this a lot these days (rightly so, in my opinion), but I think kindness is perhaps needed now more than ever. And all kindness counts, no matter how seemingly insignificant. Trust that.

Withhold judgment. A challenge, I know. But this simple intention has been life changing for me. 

Of course this isn’t an extensive list, I’m sure you could add your own “to do’s”. So I invite you to do just that in the Comments section. I truly would love to hear from you!

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Technical Difficulties; Please Stand By

I had big plans to write a few posts this weekend but I’m too distracted by the aesthetics of my blog! Remember (if you read my post about my intentions for writing) how I claimed the aesthetics weren’t a primary concern? Yeah well.

I signed in on Thursday and saw what I imagine you see: social media icons before and after each post. Aarrgghh! I cannot get them removed. Not yet anyway. And it frustrates me because it goes straight to “what will people think?”. To me, it looks like I’m that little girl of years ago, the one who still lives inside me, jumping up and down and yelling, “Please share my blog!!”.

And I don’t want to look like that needy little girl. But I am that needy little girl. However, I rarely yell; it’s not my M.O. 

So, I will try to get those dang icons removed (and fix their layout on the home page), but in the meantime, I will write and you, if you want, can follow or share, or both!

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