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.