Epiphany XII: Ring the bell

Good Saturday morning, good pilgrims of The Epiphany Season.

See that woman in the picture above? The one in the white coat, holding flowers? In the picture on the left, she's standing next to her radiation team. She is "ringing the bell," and everyone is celebrating that she has finished this round of radiation.

She looks pretty good, right? Happiness can do that to a person, even though radiation has pretty much whipped her butt. All the other symptoms are manageable, but exhaustion? Well, exhaustion is a particular poison to a child of immigrants.

I remember, once, as a young child, being bored on a Saturday afternoon. I had done all my chores, and we didn't own a TV. It was raining outside so I couldn't ride my bike. My girlfriend, Maureen, had a cold, so I couldn't play with her. (Besides, her mother wouldn't let me in her house because I was a "dirty Portugee" but that's another story for another time.)

So, my grandmother looked at me and said, "What's wrong with you?" And I, (stupid, stupid girl) took a long, sad sigh and then said, "There's nothing to do."

"There's Nothing to do?" she said. "There's NOTHING to DOOOO?" "What do you mean, THERE'S NOTHING TO DOOO?"

And then, she fixed that problem right quick. For the next hour, I polished the "claw legs" under her dining room table, took off the knobs on her Victrola Radio and polished those, and then, I starched and ironed all the purificators for the church.

I never said those words again. Indeed, I don't think I've ever thought those words again. Now I think, "Hmm . .. what else needs to be done?"

This exhaustion shall pass. I am learning a new skill. I am pacing myself. It's one of the hardest things I've ever done in my life. But, I'm learning.

That other picture? Of the woman on the right, ringing the bell? That's a picture of an old dog who is learning new tricks. And, you know, she's not unhappy about it.

She's just happy to be finished with this phase of her treatment. She's also happy because she knows she's got a week to recover before she starts chemotherapy. She's delighted to look forward to feeling more like herself and maybe, just maybe, completing one of the many projects that have been on 'pause'.

It's a good day today. It's a brand new day, today. The page on this chapter of life is waiting to be turned and opened and written upon. It's a great day to be alive. It's a gift to be alive.

And, that would be enough (Dayenu), but there lies the within this day the distinct possibility that I might be able to be part of something good. Something kind. Something noble. Some little thing that will make a small difference on this day in this life for someone.

I am so grateful. And, that gratitude fills me with a sense of joy.

I hope something good happens to you today.

Bom dia.

Epiphany VII: Resources

 

Good Monday morning, good citizens of The Epiphany Season. I have two resources I wanted to make sure to share with you, in case you need them for yourself or someone in your life.

I think they are revelations, "showings," manifestations of God's light in a particular time of darkness.

There are lots of good resources for understanding and living with Breast Cancer which is so important on so many levels, not the least of which is that cancer threatens your life even while it is taking from you or disfiguring a part of your body that defines you, at least externally, as a woman.

The first is "Dr. Susan Love's Breast Book." by Susan M. Love, MD. The NY Times calls it "A de facto bible for breast cancer patients". That has been my exact experience. (PS The latest is the 7th edition.)

Now, I must say that my hospital and the Cancer Center have been excellent in terms of providing written resources. They teach, teach, teach, all the time, which empowers their patients and families. I have a binder **this thick** with resources and information from them which has been very helpful.

And, nothing can touch Dr. Love's Breast Book. It has a "voice," you know? It's not just a sterile, medical manual or a flat, one-dimensional, bullet-point, illustrated "resource sheet". You get the distinct sense that behind every word is a very skilled, highly experienced doctor who wants to ensure you have all the information you need to actively participate in your health care.

One of the nurses at The Breast Center told me that "informed patients are a joy to work with. You not only make our work so much easier, you make it more rewarding." I told her about Dr. Love's book and she couldn't have agreed more.

Dr. Love died of recurrent leukemia in 2003 but she leaves not only this book but the National Breast Cancer Coalition which provides ongoing, invaluable research and resources to women (and men and transpeople) with breast cancer.

If someone you know or love is diagnosed with breast cancer and you want to "do something to help" ask if they have this book. If they don't buy it for them. It's a bit intimidating, so when you give it to them remind them it's not a "novel". You don't sit down one evening in front of the fire to be entertained by it.

It's a godsend for de-mystifying a horrible, frightening process for breast cancer patients and those who love them. Dr. Love's "voice" is clear, sensible, kind, and thoughtful, with an occasional appearance of a very gentle sense of humor. All of those qualities are necessary when you're faced with cancer. This book will help.

The second book is "The Desert Shall Rejoice: Psalms from the Wilderness of Breast Cancer" by Susan E. Goff. Susan Goff is a visual artist, writer, and PS&OBTW, in 2012, became the first woman elected bishop in The Episcopal Diocese of Virginia.

What Bishop Goff has done is chronicle her journey through Breast Cancer with Psalms, tracing the events from the initial screening mammogram, through her treatment, and onto her "cancerversary." As the blurb on the book jacket says, "The Psalms reflect a journey filled with sorrow, laughter, and (mostly) unshakable hope."

I have given a copy of this book to my surgeon, my radiation oncologist, and my medical oncologist. I've also sent a copy to a dear friend - a sister of my heart - who is fighting another form of cancer. Although this is a book about a woman's journey through breast cancer, this is more about the spiritual battle of a very frightening disease than it is about the specific form of it.

Here's a sample:

Psalm Against
“At Least”
Susan E. Goff

O God, when they start a sentence with “At least,”
please silence their tongues.
When they want to encourage me with “At least,”
please mute their voices.
At least they caught it early.
At least the tumor is small.
At least they don’t do radical mastectomies anymore.
At least you are healthy and strong.
At least you’re still young.
At least you’ve got good insurance.
At least you know that God is with you.
At least you’ll only have four infusions.
At least you’ll only have sixteen radiation treatments.
At least.
At least.
At least.

I don’t want at least.
I don’t want any of the least of these.
I don’t want the pittance
the leftovers
the lowest
the minimum.
I want the most of life
and healing
and grace
and love.
I claim the most of all that you intend, O God.
Life abundant. Even here. Even now.

So when they begin their consolation with “At least,”
let me smile kindly,
trust that they intend more,
and claim the most.

If someone you know or love is diagnosed with breast cancer and you want to "do something to help" ask if they have this book. If they don't, buy it for them.

Bishop Susan's voice, like the voice of many ancient psalmists, is one of searing honesty, generous and startling candor, humor - sometimes "gallows" other times irreverent, wisdom that has been born of pain and suffering, prophetic challenge, compassion for herself and others, and, mostly, love. She's also not afraid to drop an "F-bomb" when that's appropriate.

There are many, many other resources for those who are on The Breast Cancer Camino. These are two I have come to cherish. One provides solid, necessary information; the other provides bedrock spirituality and a way to pray, especially when words seem inadequate or impossible to find.

I hope something good happens to you today.

Bom dia.

Epiphany III: Radiation Lessons

 Good Thursday morning, good citizens of The Epiphany Season. The weather could best be described in the words of one of my dear friends with a sense of humor that included an acid tongue, "colder than a step-parent's kiss."

With apologies to all loving, amazing step-parents (myself included). The man had issues, but he made me laugh in that way you know stuff is funny only because it's not supposed to be. He was sort of like a Larson cartoon, you know?

A confession: It's not been an easy morning for me. This is the first day after my first session of radiation.

Fatigue? I thought I was prepared for it. I'm not. It feels like I have a large, cosmic hand pressing heavily on my body, preventing me from doing the things I want/need to do.

Dry mouth? Yeah, more like there's a bale of cotton in there.

I've got a large jar of "Udderly Smooth" cream to deal with the skin dryness/redness, which, thank God, is not a problem. Just ever so slightly itchy but I think that's psychosomatic. It's not a huge problem. At least not yet. Or, hopefully, ever, if this stuff is as good as they say it is.

Nausea? Thank God for Zophran and Mint Tea. And, toast. No butter. Just a very light smear of Bonne Maman Raspberry Preserves.

Joint pain? Thank God for Extra Strength Tylenol.

As the old saying at Dupont went, "Better Living Through Chemistry."

In my abbreviated prayer time this morning, I heard myself say, "Look, God, I don't have time for this. I've got stuff to do."

And, I heard God say, right back, "You'll have a whole lot less time if you don't do radiation right now."

Turns out, God is a very skilled debater. In fairness, She has had eons of experience, and with folks a lot more intelligent than me.

Oh, I argue with God all the time. My favorite form of confession, borrowed a long time ago from Anne Lamott, usually begins, "Look, we both know what we've got on our hands here."

I am impatient. It's not my only flaw but it manifests itself consistently enough to emerge as my major character defect. I console myself by thinking that impatience is often a byproduct of passion which has been the energy I need to do the work of the Gospel.

So, you know, it's pretty much a wash. Except for times like these, when the way I'm feeling outweighs the need to just get on with it.

This is when the wonderful Epiphany gift of resilience comes in handy. I've discovered that I have this quality. Turns out, I've had it all along. It was hiding on the underside of impatience.

If you imagine impatience as having a form, say, a rock, and you spend the energy to pick it up and turn it over and look under it, what you find there is resilience.

I learned that nifty little psychological trick from one of my many therapists over the years. I think that one was the one I was with the longest - long enough to have built what I call the Elizabeth Kaeton Memorial Deck on her house.

We were dealing with my anger - another byproduct of passion. After she pointed out that every major spiritual leader in all of the major religious writings has at least one recorded episode of anger, I started to settle in to listen to what she had to say.

That's when she told me that if I imagined anger as a rock and spent the energy to lift it up and look under it, what I would find there is something that mattered very, very much. And, if I worked on that thing - the thing that really mattered to me - I would be better able to manage my anger.

She was right. Of course. Which was why I kept coming back to see her even though there were times when I thought I'd have to promise my firstborn grandchild to her to pay off my bill.

I'll have more to say about the spirituality of resilience but not today. I'll have to do that when I'm feeling. . . well . . . more resilient. But, I'll say this: It is not only a character trait, but there is a deep spirituality to resilience that I'm learning in my conversations and confessions with God.

I'm going to go back to snuggling with my puppies. Right now, Ms. Olivia has attached her spine to the side of my left leg and Mr. Eliot has attached himself to my left hip. Every now and again, Ms. Olivia lifts her head and casts me a worried look. When she's satisfied that I'm okay, she sighs deeply and returns to her snuggle position.

They make me smile. Which is the best medicine of all.

My next radiation session is tomorrow - Friday. There's a Nor'easter scheduled to land sometime late Friday into Saturday.

It will be a perfect weekend to recover. Ms. Conroy will stop at Panera and get some Autumn Squash Soup and some Creamy Tomato Soup. My Greek friend, Penelope, mailed a package of wonderful homemade Greek treats, including some Greek bread which will be fabulous with the soup.

She also made some Baklavah and Almond Cookies. Greek medicine. And, thanks to one of my dearest friends whose spirit of generosity and kindness always takes my breath away, I also have one container of Trader Joe's Coffee Blast Coffee Ice Cream - the best damn ice cream anywhere in the world. It's strong medicine, too.

Not the same as Jewish penicillin but I don't have a cold, I have cancer. A girl's gotta do what a girl's gotta do.

Did I mention that the greatest gift of all of this is my Ms. Conroy, AKA "Nurse Jane Fuzzy-Wuzzy"? I am so deeply grateful, it makes me weep.

I hope something good happens to you today.

Bom dia.

Out of the Blue

Good Monday morning, comrades on The Way as well as all those who are tagging along because you're curious.

Thanksgiving week seems to be a good time to have this conversation. It's not an easy one to have. I've been debating whether or not to even have it, so I'll start with you where it began with me: Out of the Blue.

My mother used that expression a lot. Things were always happening "out of the blue". Someone said something "out of the blue". As a kid, I never really understood it until she said, "It just fell from the sky."

That's pretty much the way it has been for me, recently. I'll get to the bottom line and we'll go from there.

I have breast cancer. Aggressive. Invasive. Ductal. Early stage.

My prognosis is very good.

My particular story has a very important message about the extra steps women (and the few, rare men who also get breast cancer) ought to take to ensure the earliest possible diagnosis and intervention.

It starts with a monthly BSE (Breast Self Exam), although, in my case, it was so early that I didn't feel anything. It includes an annual mammography but now there's an additional step.

On July 10h, I dutifully went and had an annual mammography. For the past few years, I've followed the advice for "a woman my age with 'Dense Breasts'" and have gotten 3-D mammography. I am very grateful that my insurance pays for that version.

Well, until the man with the worm in his brain consults with the Oz Man and they agree with the two men who are going to help cut government spending.

Please note: About half of women over 40 have dense breasts. Please also note that the American College of Obstetricians and Gynecologists (ACOG) does not recommend extra screenings for women with dense breasts and no other risk factors. I had no other risk factors, except one maternal aunt who developed breast cancer in her mid-80s.

Eight or nine days later, my results came in the mail. Nothing unusual. "Normal," it said, noting the "dense breasts"

So, I filed the report and went on with my life, as one does. At 8:30, Monday morning, August 26th, my phone rang. It was my PCP (Primary Care Physician). "Hey, Elizabeth," she said, "I was just going through some charts and I'm wondering if you got your mammography report."

"Yeah, sure," I said. "It was normal. I mean, yeah, of course it was. I filed it. I can find it for you, if you want. Is there a problem?"

"Did you get the radiologist report?" she asked.

"No," said I, "Why?"

"So, it's not normal," she said as, right out of the blue, I felt something hit my stomach. "Well, there's something there, so I'm going to order another mammography, this time of the right breast only, along with an ultrasound. Let's get right on this, ok?"

"I'm on this," I said and listened as she said, "You know, I don't
know why I read the radiology reports. I almost never read them, but, I dunno, I just felt like, with yours, I should. I guess, in your business, you'd call that 'God', right?"

"Ummm, I think even in your business, you'd call that 'God'."

(See also: Right out of the blue)

"Right," she said. "Just go get that mammography and ultrasound and we'll both sleep better."

The first appointment I could get was on the 10th of September, two weeks later and two months after my mammography.

The technician was having difficulty with the ultrasound so she called in the radiologist, himself. Nice man. He smiled when he came in. He frowned during the ultrasound. Ten very long minutes later, I told him that, in my experience, it was never a good thing when doctors frown, especially during a procedure.

He said, "I'm not sure what I'm looking at here - and, you know, it may not be anything - but I'm going to advise that your doctor orders a biopsy."

All the way home, I kept hearing " . . . it may not be anything." It became a life rope I hung onto which helped me feel like I wasn't slipping slowly off the end of the earth and into The Blue.

Twenty days later, on the 30th of September, I had a biopsy. They put in a little clip on the "growth" (that's what they called it then) so that "future mammographies will show the clip so we know it's there and can measure it."

Sounded reasonable. I told her my story and why I was there and asked her 'how does this happen?"

She was quite chipper. "Oh, you know, it could have been the radiologist. Some of them have .... accents . . . which can be hard to understand. Or, it could have been the transcriptionist. Or, sometimes, you know, it's the machine.

"Look," I said, cutting through her cheery tone, trying to be polite, "I cherish the diversity and inclusion in this country. I am thrilled that other countries send us their brightest and best. But, you know, if it's a matter of accents, maybe some remedial language skills are in order. And, if it's the technician, perhaps another in-service or two?"

Suddenly, her cheerfulness touched a place in my Azorean Portuguese blood and I could feel anger begin to rise. I heard myself lower my voice the way my mother did when she was angry, and through clenched teeth I said, "But if it's the machine, then for God's sake, get another goddamn machine."

And then, because I'm of good immigrant stock who was carefully taught my place, especially in the presence of a very fair, very blonde, woman who put a capital C in Caucasian, I apologized for "sounding angry. I'm just anxious."

And she, for her part, immediately looked up my report and said, "You know, it's still here. In your chart. And, it still says, 'normal'. I'm going to report this to my manager. I'll be right back."

Suddenly, people in white lab coats were in my room, asking questions and apologizing and assuring me that "this is going to go to the highest level" and "this will be addressed."

On Friday, October 4th, around 4:30 PM, Ms. Conroy and I were sitting in our chairs, checking emails and such. A little notice popped up. "Oh," said I, "there's a message in my portal from the hospital. I wonder if that could be my pathology report."

I felt absolutely no anxiety. Indeed, I felt pretty confident that this was going to be a benign cyst or a calcification. I didn't even get upset as I normally would in having to set up the new portal with just the right password and then tried to figure out where to find the path report.

It was all good. Until it wasn't.

And so it was that, right then and there, in the comfort and relative safety of my wonderful, overstuffed chair, there in my living room with a wonderful view outside the windows of my sunroom, with my Beloved sitting right next to me, that I read my pathology report.

And, just like that, right out of the blue, my new identity fell right out of the sky and into the very middle of the middle of who I am.

I have breast cancer. Aggressive. Invasive. Ductal. Early stage.

I am a breast cancer patient. At 4:45 PM on a Friday afternoon when all the clinics and doctor's offices had closed and no one would be available until Monday morning.

It was quite a weekend. We were both in shock. I remember Ms. Conroy calling what seemed like half the medical and nursing universe, getting ideas for referrals and next steps.

I called together my spiritual posse, telling them the news and getting on various prayer lists. I called my rector who was pastorally brilliant, as always. He called one of his daughters who is a resident physician for advice.

It was also T-minus 7 days to my pilgrimage to Greece. Do I cancel? Do I go? How can I go? I'm a cancer patient.

Most of the rest of that w/e was - is, still - a blur of questions with answers that had to wait and confusion and anxiety.

I do remember that at 8 AM on Monday morning, I called for an appointment. I told them my story (you betcha I did) and got an appointment with the head surgeon of the Breast Cancer Unit the very next day at 3 PM.

She was wonderful. Brilliant. Highly educated and trained. Experienced. Skilled. Compassionate. Kind. Took her time. Listened. Answered. Was outraged by my story. "This WILL be addressed," she said, "This makes us ALL look bad."

"And yes, of course, you will go to Greece. I won't be able to operate until November 4th. Which is better, do you think, to sit around your house wringing your hands for a month, or going to Greece and expanding your mind and taking care of your heart and your spirit?"

See what I mean?

On October 31st, just back from Greece, I had a very minor pre-operative procedure called "the insertion of a savi scout" into the tumor, which allows the surgeon to wave a wand over the breast which causes the savi scout to light up so that the surgeon can find the tumor and remove it and, if she deems fit, to remove only the tissue necessary, making it minimally invasive and less destructive to the integrity of the rest of the breast.

A big change from the days of "Slash. Burn. Poison."

On November 4th, the day before the election, I had a "segmented mastectomy," which means that the mutilation of the breast was as minimal as possible.

I've joked with some of my friends that I'm planning to have the scar tattooed. I think we've decided on a lovely, feminine scroll that will read, "Bad-assed woman".

It's no longer a joke. As soon as the radiation and chemotherapy are complete and it's safe to do, it's as good as done.

My prognosis is good. I'm feeling stronger every day. I'm no longer on pain meds that make me feel and sound goofy. I still have a bit of anesthesia brain and it's frustrating and annoying to have to reach for words but this, too, shall pass. I've been to Greece and back and no one will ever take those memories.

So, I told you all of that to say this: A monthly BSE is not enough. An annual mammography is not enough. Please make sure that you ask for a copy of the radiologist's report AND make a special request that your PCP or ordering physician reads it AND that someone from the office puts her remarks on your patient portal.

If my PCP had not ... "decided"... to read my report that Monday morning in her office, this would be a very different story.

I'll keep you posted as I move through this journey. I would only ask that you please not tell "social media horror stories". I know they're out there. I don't need to hear them. Seriously.

I've not told you my treatment care plan because, well, I see my radiation and medical oncologists the first week of December. I'll know more then. Even so, please refrain from giving me advice. I know you mean well, but honestly, I'm in good hands.

Oh, and one more thing: Please don't send me a private message on FaceBook. I rarely go over there unless you are an old friend or relative and that's how we communicate. Please? Thank you.

I feel deeply blessed and so amazingly grateful. And, if my story can help to change another person's story, well, let's give all thanks and praise to God who drops things right out of the blue and into the middle of the middle of our lives.

I hope something good happens to you today.

Bom dia.