"Be curious, not judgmental." A key to great teaching, better relationships, and (I think) real happiness.
Hope Is a Good Breakfast - The Blog
I am a 43-year-old mother of two, diagnosed with triple-positive breast cancer in August 2012. Before my diagnosis, I knew nothing about cancer. This blog is the story of a journey that I never dreamed I would have to take.
Monday, August 21, 2023
Friday, August 18, 2023
Saturday, April 15, 2023
Judy's Poem
This year, I started teaching a writing group at a nursing home. The first day of our group, I sat down with a table full of elderly women who had parked their walkers nearby. I started off light:
Me: I had no idea this would be a group of all women! Where did all of the men go?
93-year-old woman: They're all dead. We outlived them.
Laughter ensued.
Yesterday, I had our April meeting. A woman I will call "Judy" showed up again, mostly because I bumped into her on the way to the meeting room and asked her if she was coming. She clearly hadn't intended to but she pushed her little walker in front of me and off we went.
Judy is in her eighties; her short-term memory is weak. But she told me a story yesterday that I want to write down so that I never forget it.
Judy was in her senior year of college. (She attended night school and worked all day because she could only take business management courses if she attended at night. Women were not welcome into the business classes during the day.) Her mother was very ill and Judy knew that her mother wouldn't live to see her graduate from college.
Judy went to visit her mother. She had written a poem for her mom -- she remembers bits and pieces of the poem still to this day -- and she wanted to share it with her mother before she died. However, Judy's two sisters refused to let her share the poem with her mother. They told Judy that if she shared the poem, their mother would know that she was dying and that they knew it, too. Judy's sisters wanted their mother to be ignorant of this fact. Judy wanted to face it head on.
Judy told me that at some point, she snuck past her sisters and read her mother the poem. Her mother loved it. Judy's smile radiated as she told me about how much her mother loved that poem.
I have been thinking about Judy's story ever since. As I continue to write my novel about the complexities of truth -- the challenges involved in revealing it, and the wave of pain-healing-pain-healing it can activate -- I was particularly moved by Judy's story.
I don't fault her sisters for wanting to protect someone they love, for wanting to hide the painful truth and spare their mother additional pain. I trust that Judy's sisters believed that sometimes, hiding the truth is better for everyone. But I'm like Judy, and have been long before cancer made me face my own mortality. I believe that we all have to start with the truth, as painful as it may be.
I'd imagine that it was devastatingly hard for Judy's mother to know that Judy was aware of her impending loss. A mother's knowledge of her child's pain; damn, it's hard. But the pretending -- the lies that her other daughters told her -- I'd bet that they never really made their mother feel any better. And that's why I admire Judy so much. She faced the truth and shared her love by sneaking in to read that poem. The love-filled pain felt by mother and daughter must have been indescribable, and, at the time, it may have been easier for Judy's sisters to avoid parts of it. But as Judy told me this story, as she recounted how much that poem meant to her mother and even recited parts of her poem to me, I didn't see pain. I saw pride and love. Such pure pride and such pure love.
Love can take on many different forms, and protecting those we love from life's many challenges -- especially the reality of our own mortality -- is certainly one form. But so is Judy's type of love -- the type of love that says, as hard as the truth is, I'm going to face it and hold your hand through it -- that, for me, is a more soul-filling kind.
Friday, October 7, 2022
A Spot and the Soul (Part 2)
For my 40th birthday, all I wanted was to go watch my mom teach a course. She consults on leadership topics and I hadn't seen her teach in years (maybe decades), but since she's the best teacher I've ever met, it was all I wanted. It was March 10, 2020, and we had a date on the calendar when I'd accompany her to a training. Of course, that never happened because COVID happened instead.
Fast forward 2.5 years. I'm 42 now and I had still yet to see my mom teach one of these leadership courses. However, in my year of writing, I have a flexible schedule and I finally got the birthday gift I wanted--I got to attend a training that my mom was doing for a group of nurse leaders at a hospital in the region. The topic of the workshop was TRUST and over the course of two Fridays, I watched in awe as my Mom taught about a topic that I definitely need to learn more about.
As part of the training, my mom has each of the participants complete what's called a "DiSC assessment" of their work styles. Then she does engaging activities in which participants analyze how their work style could influence others (and so much more but that's the gist). I got to do an assessment and I came out right over the line of the D-I. No shocker that I'm not private or even-tempered, but rather direct. Yes, that's very much me.
I couldn't wait for Brian to take the test and when he did, we discovered he's a very solid C. Conscientious. Analytical. Systematic. Reserved. Yes, very him.
I have been thinking about my mom's training ever since. In this year of reflecting on my teaching, I realize that one of the hardest things is establishing trust between student and teacher, student and student, teacher and leader, etc. etc. Trust is so key to a functioning relationship. It kind of seems like the foundation of it all.
Mind you, I am not pretending to be an expert in DiSC (how D of me to even try!). I bring this up because it relates to the nightmare I feel like I'm just waking up from, a nightmare that I am trying to process.
Last week, in the beginning of the nightmare, I wrote the blog prior to this one. I didn't share it on social media so likely no one saw it. That's how I wanted it. But it's here, in all it's teary glory.
Wednesday morning was the day of the follow-up MRI of my chest to see if the spot that they saw on the prior MRI was anything to worry about. I was surprisingly calm on Wednesday, all the way in to Dana-Farber (even before I took the Ativan) and all the way back. I was actually hanging in there pretty well until my willpower ran out and around dinner time, I felt like I was going to lose it.
I was 100% convinced that this was it. The cancer was back. Now mind you, my medical team was VERY clear that this could be nothing. But given my history, they wanted to do the tests to take a closer look at the spot. Given that my dot on the DiSC circle is as far away from the Steadiness part of the pie as possible, it's no surprise that I struggled to be stable.
Let's just say, it was a hard week. I tried to breathe, eat, and sleep. Writing felt impossible, which made me feel completely useless. I went to the darkest of dark places. At one point, I almost threw my phone across the room. See, Brian and I set up a little alert for reasonably priced houses in Maine. Years from now, we hope to retire there so just for fun, we look at the houses that come through. We say we are getting knowledgeable about real estate and maybe, as a C, he's doing that. I'm just dreaming and then writing with the hopes that some day, the Maine house would be possible.
Yesterday, before getting my results, a Zillow house came through that I clicked on. It was in Harpswell and it was adorable. And that's when I lost control of my mind. I don't know that my mind formed full sentences but the thought was clear: I'll be dead before we get to retire together. And that's when I almost threw the phone.
So that was a low point. But there were much higher points of this 8-day nightmare. I learned a lot about myself, the most important being that I am very focused on myself. I guess that makes me selfish but I hate to admit that. It's true though. I focus a lot on how I feel, what I'm doing, what I need. I think as a hypochondriac, the selfishness is also innate, not that it's an excuse.
Also not making excuses (or am I?), probably because I'm a D, without results and a plan, I basically feel like I have no ground underneath me. So I have to prepare myself for the worst. It's the only way I can cope. So I lived 8 days of thinking that my time on this Earth would be limited. Of course, all of our time is limited, it's just that when you think you have metastatic cancer, you can see the horizon of that limit. And once you see that horizon, everything before it looks different. Like everything. Every song, every memory, every plan, every everything. I won't even bother with the examples; there are too many.
So while Brian and most of my sane family and friends waited for my actual results, I just prepared myself. I made some decisions and in retrospect, the process of making those decisions and the decisions themselves were a huge step forward in my growth as a human being.
(You can probably deduce from my tone that the results came back as good. There is a tiny mass that is likely a benign cyst on my chest. They have a good picture of it as a baseline and we will monitor it with another MRI in three months. It's the usual story, and wildly good one all things considered.)
I think I only have the emotional strength to write about one decision today. Last week, I basically realized that when I first had cancer 10 years ago--my kids four- and one- years old, I wanted to do everything I could to give them everything I had. To be their mother--a central figure in their lives. Someone to raise them and teach them and do everything that a parent should do. That first time around, it was all about me, really.
But the last eight days, as I lived my life assuming that cancer was once again on my horizon, I prepared in a different sort of way: I planned to step back. Oh trust me, I'd fight like Hell with every ounce in my being; that's a given. But I've known too many people who've done that and still reached the edge of that horizon. So I decided that if it got to the point in the next several years that death was imminent, I wanted to not matter to the people around me. I wanted my husband to have friends he could golf with anytime (check) and be cute enough to find someone else to retire with (check - but just not to Maine). I wanted my kids to have activities they love, friends they love, family they love, and people who would surround them with joy if I couldn't (all checks). I know you may think I'm the biggest D for DRAMA that you've ever known. But this is how my mind works. I need to make a plan, at least, for how my mind would cope. And this time, it wasn't going to be about me. As long as everyone else would be okay, I would be okay crossing over that horizon.
Now, Brian, well, he actually waits for the results. He held on to the reality that this may be nothing before he decided where I should be buried. Such a thoughtful C. Thank God for him, and he's allowed every single "I told you so" he feels he needs.
Speaking of God, on the way to the MRI, I opened a book at I had by my bed. It's called Chase the Lion and I got it at the library's book sale for $3. Turns out, the book is far too religious for me but on Wednesday I flipped it open for the first time and the topic on the page was "Faith Defined." I read just that page and it helped. "Sometimes you need to stop praying for something and start praising God as if it has already happened." (85) I had been doing a lot of praying, to powers that others seem to define as "God," so this line caught me. And a light peace came over me. I have a husband I love who is driving me to one of the best cancer hospitals in the world for a test to be sure that I don't have cancer again...a cancer that they have kept away for TEN YEARS! A cancer that, a dear researcher friend told me the night before, has many new options for treatment in the metastatic state (thank you, Selena). Instead of begging God that morning, I thanked my higher powers for the day. And yes, an hour later, I took the Ativan, and yes, eight hours later, I fell apart, but it was progress.
Now, Annabel is almost home from school. Before she arrives, I'm going to take a huge leap that my amazing sister-in-law is helping me take. Lauren texted me the names of therapists who specialize in medical trauma. So to all of you who got to this point and can only think, Get this woman a therapist ASAP, please know, it's next on my list. Because if this last week taught me anything, it's this: (1) Being keenly aware of the horizon is a really hard part about being human, no matter our religion, health, work style, or way we find hope. And (2), I'm one of countless other humans who already know that.
What fear. And what comfort.
Thursday, September 29, 2022
A Spot and the Soul (Part 1)
The technician jokingly called me "fresh" as she rolled me into the MRI tube this past Tuesday afternoon. She was referring to the fact that I was about eight years late in scheduling the MRI that she was about to perform. Truthfully, I had no idea that I was supposed to be going to see my plastic surgeon for MRIs every 2-3 years to check on the implants in my chest.
I hadn't taken an Ativan for this test which was a first for me. I hate confined spaces and sitting still so lying still in a coffin-like tube isn't my idea of a good time. Ativan helps. I only had one pill left, so I figured I'd save it for the next brain MRI in December.
I had some definite moments of panic while the MRI clanged away but I got through it. When I emerged from the machine, cheeks burning red and body freezing, I promised myself to take the Ativan next time. I wondered if the technicians saw anything on the scan but I've learned not to ask them because they don't tell you. Still, I felt a familiar nervous nausea as I changed out of the johnny and back into my clothes.
On the way out, the technician who called me fresh joked again, "See you in ten years!"
"God-willing," I replied, smiling, still sick to my stomach. God-willing.
Yesterday, I took Annabel to Kohl's to look for a dress for a fancy event we are attending as a family on Saturday night. She had a few in hand and was headed to the fitting room when I felt my phone vibrate. It was the plastic surgeon. The implants look fine. But.
My legs immediately turn to jelly when I get results like this. I felt the heat fill me, head to toe.
I don't remember the exact words she used. Hyper-activity. 4mm. Bone. Sternum to be exact. Another test will look more closely.
I thought I was going to throw up. "I'm scared," was all I could eek out. (Thank goodness Annabel is so independent and doesn't need my advice on clothes to decide if she likes or doesn't like them.)
Dr. Chun assured me that these types of things pop up "often." I made her repeat it. Often.
"And are they ever cancer?"
"Very rarely."
"I'm scared."
"I know you are and I'm so sorry to have to do this to you when it could be nothing. But when we see these spots, we have to investigate. I'm so sorry."
I was pacing now, in and out of the clothes racks. A middle-aged woman in a grey sweatshirt with baby blue writing walked by. I almost dove into her arms, ready to tell her everything and ask her to just hold me up. I would have done that were I alone. That poor woman has no idea what she escaped thanks to Kohl's having a limited selection of dresses that Annabel liked. Had she had more to try on, that woman have gotten a dose of a crazy stranger she'd never have forgotten. Knowing Annabel would emerge shortly, I let her pass by.
Brian was teaching a class until 6 p.m. and it was only four. I didn't want to bother him so I called my mom. Of course, she was wonderful. My rock. She asked if she should meet me at Kohl's. I told her I thought I could get home myself. But honestly, I didn't believe it yet.
Annabel emerged. Nothing fit, thank God because I never could have stood in line to pay. It took everything in my power to not share what I was feeling. I had to be a calm, rational version of myself and let me tell you, it would be easier to convince myself that I'm a seahorse than convince myself I'm calm when I'm not. But somehow, I did it.
Annabel immediately knew something was wrong and I told her that the stupid MRI just showed a little spot that they have to look at. She was scared. I told her what the doctor told me. That these types of things "often" pop up on tests. That they are usually nothing. I told her that I was just so frustrated (hence, the approaching tears) because I just really didn't want to go for another test. She seemed to understand that. Still, she was scared and upset. God, I wanted to help her. But I was too scared and upset to do it.
I don't even know how I got us home but somehow, I did. Once there, I ran upstairs to the cabinet and took the last Ativan that I hadn't taken the day prior. I tucked it under my tongue so it'd dissolve faster.
My mom was on my porch in minutes. We knew we had to make some calls and by some miracle, I made them. To my oncology team to ask them to weigh in on next steps. To my PCP to order more Ativan. I paced. With Annabel in the other room, I cried.
I had to get her out of the house so I could freak out and then collect my thoughts (it's a two-step process). I tried to walk her over to the field hockey game but as we got close, she started to cry and said she just wanted to go home. No! I thought to myself. I'm supposed to get you to this game with your friends so I can go home and fall apart. I need to go fall apart! But she didn't want to go to the game.
And then something happened. In my most self-centered state, something came over me that told me, Do this for her. Do what you think you can't do FOR HER. And because of that voice--the voice of love, I guess--I did it. I shed a tiny part of the burden I was so selfishly bearing, just enough to hug her and make a joke. We laughed about how annoying medical tests were, about how pouty I was being. We walked home, lighter, me, Annabel, and my Mom.
My sister-in-law is an incredible nurse practitioner and later last night, she gave me the hope I needed to hang on to some version of sanity. She assured me that these types of things pop up all the time. That it could be nothing. That it could be nothing. That it could be nothing.
By the time Teddy and Brian got home, I had gotten myself to a much more stable place. The night went on as usual. Homework. Dinner (for those who could eat). Television. Bedtime. I even slept. Yes, I took another 0.5mg of Ativan, but still.
This morning I took a walk with a dear friend, someone who knows more than I do how fucking scary this all is. (Remember: swearing allowed when scared shitless.) She knows the depths of this type of fear, and while it comforts me to have that company, it breaks my heart, too. No one should know this type of fear. (Okay, maybe I'd wish it on just a few people but those ones are basically the devil's spawn, and even then, I'd probably cave and want them spared, too.)
I know that this could be nothing. I have had these scares before. So why am I writing? Because writing is my lifeboat.
Speaking of lifeboats, I just finished reading, Stranger in a Lifeboat by Mitch Albom (yes, the "Tuesdays-with-Morrie-guy"). That book. Wow. It shook me to my core. I won't ruin it for you but I'll say this.
I know it's easier for people who love us to watch us face an obstacle and say, "You'll be okay! It could be nothing!" That's the way they hope and I would never take that away from them. But for me, it's not enough. I know this could be nothing. But I also know it could be something. Cancer, again. I have to be able to say that to myself. To type it. To read it on the screen. Of course, the rational ones around me will say, "What are the chances!? Don't worry until there is something to worry about!" And I love that you think that way. I wish I could think that way.
But something happened to me in these last ten years, and it wasn't just the shock of my own cancer. Today or any day, my hope is no longer founded on the thought of maybe it won't come back. There's always a part of me that assumes it will. I was just too young, too (otherwise) healthy, too shocked to think of it any other way. Plus, the nightmares. Oh the nightmares. They are there at least every week. They show me--with cinematic detail--what could happen. And, of course, there are the scares--like this one. The little glimpses into the "what if?" The pure Hell of those glimpses.
And so I need to ground my hope in something deeper. I need to believe that if this spot on my sternum does turn out to be metastasized cancer, that they could do something about it. That there would be a surgery or a procedure or a medicine. That there would be a plan of action, and then, action.
But I'm not done yet. Do you want to know how really, truly crazy I am? (It's a lot, brace yourself.) I actually need even more hope than that (a hope-hog, right?!). I need to have the hope that if they didn't have a plan, or if the plans eventually ran out, that the universe would somehow still be loving and fair. What does that look like? (Oh the tears.) Breathe. It looks like last night. My mom taking Annabel to McDonalds. Teddy coming home from a golf match and doing his homework. Brian teaching and coaching. It means me, absent, still somehow able to show them how much I love them.
There is a page in Mitch Albom's Stranger in the Lifeboat that reads (without giving away any surprises, hence the multiple ellipses):
"When someone passes, Benjamin, people always ask, 'Why did God take them?' A better question would be 'Why did God give them to us?' What did we do to deserve their love, their joy, the sweet moments we shared? Did you have such moments with Annabelle?" [The character's name is Annabelle, like my Annabel.)] …
"Those moments are a gift. But their end is not punishment. … Beginnings and endings are earthly ideas. … Feeling loss is part of why you are on Earth. Through it, you appreciate the gift of human existence, and you learn to cherish the world[.] … But the human form is not permanent. It was never meant to be. That gift belongs to the soul." (page 241-242)
My deepest fear and my deepest hope lies in the "not permanence" of us all. So yes, the spot on my sternum could be nothing. But if it's something, I will still find hope in modern medicine, in the resilience of the human spirit, and ultimately, in my faith that soul continues on in a way no earthly being could ever understand.