“Call me,” Stan’s text read. Never a good sign. And so it wasn’t.
Turns out the third time isn’t a charm in my case. And the trend continues that every piece of good news comes with a kick in the teeth. This kick was a surprise though. On this very wide excision operation, where Stan got every bit of tissue in a very wide arc around the original little 6mm tumor, we have finally gotten clear margins! That means there’s no pesky DCIS (the pre-cancer) in the edges of the sample; in fact, there was hardly any DCIS at all. If only the sentence had stopped there.
What the histology found is that in a totally unrelated piece of tissue, 5 cms away from the little 6mm tumor, was a tiny 2.5 mm tumor. Not DCIS. More cancer.
This is very bad. The original 6mm tumor was first spotted before it was a tumor by Carmen on the ultrasound in December and biopsied. Then I found it in July and had it looked at in August. I’ve had numerous ultrasounds, a breast MRI, and a PET scan. Each of these was meant to find every last speck of cancer. But they missed this little lump, too tiny for Stan to even notice as he removed it.
Now it might be that Stan inadvertently stumbled on the last piece of cancer my breast has made, that the rest of the breast is clear, my margins are clear, and I could sail forward into radiotherapy.
Or it might be that 5cms in another direction there’s another tiny lump that lingers. Or two.
“It’s totally possible we got it all and now all that remains ins healthy tissue,” Stan says. “How much risk can you handle?”
So I sat with that question.
If I decide I can’t handle the risk, here’s what happens next. A fourth surgery, longer and more invasive and painful than the others. This time to remove the reconstructed breast, take out the implant, remove all the tissue of any sort that’s left there, remove as much skin as possible, and let it heal flat. And not just flat, Stan warns me, but a bowl—a “hollow deformity” as Stan calls it. Two nights in the hospital. The drain for a week. And a hollow deformity on one side and a breast on the other. A valley and a mountain.
Then radiotherapy a month later.
If I can handle the risk, I keep my beautiful two breasts and head into radiotherapy now.
I went out and explained the situation to the tiny but perfectly formed workshop I’m teaching this week (seven women in my living room for an advanced workshop—what could be a better place for this personal tragedy to unfold?). There were conversations about why and to whom breasts were important. There was excellent listening. Marian said, “You’ll know what the right decision is. You’ll wait and you’ll know.”
At the moment I was so bewildered, so caught between a rock and a hard place, that I could not imagine knowing.
Later, while they worked in groups, Aidan came down to comfort me. He is not afraid, he tells me, because this is finally bad news with out long term medical implications. “I’m totally there for you, Mom, because I know this is horrible for you. It would be horrible for me in your position. But usually when a kid sees his mom crying over a medical result, it means she’s going to die. And I’m just so happy you’re not going to die. That’s the only thing that matters.”
And with his lovely 15 year old manboy arms around me, I knew for certain what I would do. I would have a mountain and a valley, another surgery, another drain. Because the thing that matters is being on top of the planet rather than under it so that these kids can have a mom for as long as I can possibly manage.
So now I am trying to figure out when the next surgery is.
And I am trying to figure out how to make sense of losing a body part. I have a big set of equals in my head here, two breasted= normal; one breasted= mutilated. One breasted=never sexy again. These are big big equals, and they need to change. I intend to be one breasted for as long as possible, and so I need to find a way to find my way to psychological health as I find my way to physical health. I suspect you, Gentle Reader, are in for some entries on breasts and what they mean as I grieve mine and try to figure out what comes next for me. Pray for me.
[Picture is from dawn this morning. They still come, no matter what the news…]
25,000 dawns 
Oh how I wish you did not have to goo through this again Jenny. You are I’ve the hands of a mighty force who knows your decision already, and those of us along for the ride will be here the whole way. Prayers for peace, Katie
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Thank you for sharing this. You are right – being earthside for as long as possible is what matters when you have your precious babies to love and care for, no matter how old they are or how far away they live. You are an amazing example of someone who is a fighter – who is open to the inspiration there is in the world at any given moment to keep you going. We will be praying for you to have strength and persistence on the days where you need it most. Sending big hugs from Atlanta…thank you for being such a source of inspiration to all of us. Your words remind me to cherish every second of every day even when life doesn’t seem cherish-able …
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Hi Jennifer,
Wow.
Reading your blog is so intimate and tender.
I feel my breasts shiver, my heart skip a beat, and an exquisite softening in my throat.
“We are all going to die,” I remind myself. “Cancer might visit you one day, too.”
The question is, how will we live. Now.
I bow to your listening and to your beautiful man son’s embrace.
Onward on this journey you sail.
I hope there are many pockets of joyous wonder along the way.
After all, mountains and valleys is more true to life than just mountains, no?
So much love and admiration,
Sarah
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Jenny,
This is your old hairdresser, from DC.
I am praying for you.
I have been through loosing my breasts, to cancer. I am still alive and feeling blessed.
If I can be of any help, I am here.
Much love,
Patti
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Wow, Jennifer. Bad that they found one but good that they had fortuitously removed it. CT scans move at 2mm intervals I believe so the small ones sometimes hide in between. It happens a lot. What do your CEA levels say? My hope for you is strength and ultimately health. I pray for you regularly.
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Tears filled my eyes as I read this. I am really sorry for what you must go through. I am also moved by the beauty of your loving embrace with Aidan. Your son is a loving and wise young man. He spoke truth to you. Jennifer, your are a bright light on this planet that needs more light. I thank your for fighting this cancer. I too want you around as long as possible. I wish there were more that I could do to help. I continue to prayerfully send you love and light.
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I was about to reply to you Jennifer and then I saw Bob’s reply and it perfectly encapsulates what I was about to say. Tears, deeply, deeply moved by beautiful Aidan, and the need for you to stick around. Here are some other random thoughts….. In my new role as Commissioner for Equal Opportunity in South Australia, I have an amazing member of my team (a senior manager called Trish) who has suffered from disfigurement, disability and pain every day of her life and yet manages to make an amazing contribution with her incredible life experience, wisdom, compassion and massive intelligence. As I battle with my own significant health challenges and the impending death of my beloved stepmother, Carol, from mesothelioma, I am continuously inspired by you, Trish and Carol. I shared your ‘Prayer’ post with my 82 year-old dad and he then shared it in a beautiful post on his own Facebook page.
Mountains, valleys…they are all beautiful surface structures…..
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Hi Jennifer, I am so sorry that this is the news you were dealt. I understand how Aiden’s words were just what you needed, and immediately you knew what direction to go. I will continue praying for you.
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I wish I had something witty and inspirational to say… nothing seems to cover the enormity of your decision. Ultimately you will know in your heart what the right decision is, difficult yet as it may be. You are in my prayers and I am sending so much love and strength to help you through this extremely tough time.
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Dear Jennifer. I hardly know what to say other than we’re sending you lots of love and support through this next chapter. Your strength, transparency and yes even humor is an inspiration. Trusting the process and energetically holding you.
Steve
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Oh Jennifer, I’m so sorry to hear the latest news of continuing challenges. I hope you know that you will always be beautiful. Your friends and family see that beauty in so many ways. I hope you will see and feel that beauty too!
Thinking of you and sending love and positive energy your way.
Betsy
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Jenny, your writing continues to stun me. I told your dad the other night at dinner, Jenny is the writer I want to be when I grow up. WHERE do you get these eloquent thoughts??
You left out the husband in your equations up there. Betty had both removed 20 years ago and she is still as sexy to me as she always has been.
Before her surgery, she said, “Well, I’ve had these for 40 years. And so I won’t have them for the next 40. That’s fair.”
We love ya,
Hans Petersen
(See the NY Times front page story yesterday “Going Flat.” 10/31/2016
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What beautiful responses to you Jennifer! Mountains and valleys.. textures and a huge array of whites, grays and blacks… relationships in their ordinariness and magnificence. You are surrounded with so many souls deeply grateful for you, your gifts and how you travel on and heal this planet. May this journey of yours be infused by the cradling and gratitude from such a wonderful collective – even bigger than the humans in it… holding whatever is to come from the chapter with a deep abiding song. V
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Jennifer, as we say here, +1 to everything Bob said 🙂 He really did say all the things I was feeling but not able to articulate when I read your post yesterday. And…my mom died from cancer when I was 15. From that perspective, I want to say a resounding +1 to your staying on top of this earth for as long as possible. Your kids need you, and so do the rest of us.
When your post came through yesterday, Anne and I were doing an ITC session for a group, and we both saw it right afterwards. I was so glad I was able to be with someone else who loves you while I took it in. We took a few breaths, and I found myself instantly in your river of light, both pouring love into it and bathing in it, too. Your impact in this world is so much bigger than you know, and the love available for you is, too.
Sending big hugs,
Linda
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Hi Jennifer
Sending you love and a big hug as you gather strength from all who know and love you.
Your friend
Jane
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Jenny,
I love you and wish that I could provide some words of wisdom for the continued road ahead. The only thing that I can provide though is my love and prayers. A couple who we have become friends with through Addie’s daycare class are artists and do a lot of really cool things with sounds and the world around them. Right now they are doing this sound installation in Philadelphia that is created with the dawn, so I thought you would be interested. I plan to go this week before it ends and will send loving prayers and meditation your way.
Here is the explanation:
Each morning a sound will rise with the sun at dawn and play from the rooftop of Tindley Temple. The start time of the sound
will change each morning in order to synchronize with the sunrise, based on real-time astronomical data. This sound art installation is
a project of artists/composers Mendi + Keith Obadike. It was inspired by a song composed by the Rev. Charles Albert Tindley, containing the enduring lyrics “By and by, when the morning
comes . . .”. Sonic Migration (Morning) is a meditation on the longing for spiritual and political redemption present both at the peak of the Great Migration and today.
————-
Why This Song?
The verses to the song “By and By” describe life as tempestuous, dark, and full of sorrow, but the refrain introduces the idea of morning as a time in the future when life’s troubles will be alleviated. This song illustrates not only Tindley’s spiritual concerns, but perhaps the political and social challenges of the Great Migration. Our work “Sonic Migrations (Morning)” reorganizes the melody and chords from this work as a way to meditate on the imagined morning and its implication for today.”
——–
The Sounds
The primary sounds in the installation are vocals supported by flutes,bells, contrabass, and the sustained sound of a harmonium. Permutations on a slowed-down version of the melodic refrain from the song “We’ll Understand it Better By and By” build up and swell over approximately 15 minutes in sync with the sunrise. The melody is broken down into fragments. According to the artists “It’s like looking at the refrain ‘when the morning comes’ under a microscope.”
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Dear Jennifer
Survive! Live! Yes, indeed, that is the brave decision, and Aidan is so right, having you still breathing means so much more than the alternative. We all age and our bodies change, but the connections between us can be deepened rather than lessened from our life struggles.
I am excited for you, that you have this option, that you will breathe in the air of many more dawns, that will be more opportunities for our paths to cross again. Life is risk. You have allowed hope to be stronger than despair, and you have available the amazing resilience and wisdom that comes from all these wonderful people in your life. It is brilliant that you have chosen, for your eyes will continue to sparkle and your mouth will find many more smiles. Thank you for sharing, dear friend!
love and smiles, and so looking forward to seeing you again.
🙂 Maurice
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Not until I heard this news did I realize I just couldn’t believe the results of this latest surgery would be anything but totally successful. Now for a personal experience. All my 11,12, and 13 year old friends were wearing bras.I had no reason to get one,though of course I did and was so pleased to have the straps show through thin blouses. Mom,(Grandma),would reassure me that one day my breasts would develop. Years later,as I was shopping for my wedding dress with Mom and undressed in the dressing room,Mom said:”Oh Patty, it never happened,did it?” Even after having children,basically nothing.Mom said what I have done all these years.”You can always put them on.” My bra drawer is proof of that. I certainly understand my situation is far different from yours,yet Neither you nor I will need to deal with the aging problem of breasts sagging down to our hips! Your gift of expression is helping countless others.God bless your suffering and your ability to help families dealing with this dreadful disease.
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My darling Jenny… so sad to read your devastating news. There are so many people from so many places that read your inspirational words. I feel very inept to comment. We will lift you up in prayer and wrap you in love from across the miles. We want you to grow old, too…
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My tears at this news mingle with the ever present Seattle rain today. May they mix with the tears of all of us loving you and water a beautiful garden that you get to enjoy for many decades to come. In love and appreciation for the beauty and power of your words and your spirit.
Yarrow
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Dearest Jennifer – I too join with all your other beloveds around the world to encircle you with light, love and holding. Like you and everyone else who has written on this blog, I was deeply sad and shocked to read this news. And yet in the midst of this scary and disappointing result, I’m also feeling gratitude – for the amazing community of people who love you so dearly and for their outpouring of support to you; for your exquisite writing about this experience, which is such a gift to all of us; and for your wise surgeon who took such a wide margin that he found these other cells. And so I join with all the other dear ones in your community of support to express my love and holding as you prepare your body and heart for this next operation.
All my love
Janet
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