“Your breast cancer has metastasized to your bones and to your liver.”
How did I get here?
I noticed some fibrous stuff going on in my breast for 6 months. 3 months later, I felt a pea-sized lump. 3 months after that, there was an indentation. The indentation indicated cancer from what I had read (because I was reading a lot at this point). However, I still did not get the necessary primary care physician (PCP) for a mammogram referral until I was forced to by . . .
…pain in my right kidney and an episode of severe fatigue before Thanksgiving 2019. I went to urgent care. A sample test revealed red blood cells in my urine, and I was given a referral to a PCP.
Why don’t I want to go to a PCP? I don’t have the most healthy habits, and quite frankly, I don’t want anyone to tell me to change them. But fine, I’ll go to the recommended PCP and, while I’m there, I’ll ask her about the pea-sized lump in my left breast and the indentation. Time to face that music.
I knew I most likely had breast cancer. I didn’t think it was anything more than one lump (in one breast), Stage 1 for sure, but even so, I’d probably need the full bore of treatment – surgery, chemo, radiation. My new PCP (who turned out to be AWESOME) sent me for mammograms and ultrasounds. But then the mamo and ultrasound folks were looking at my supposedly healthy right breast a second time and were spending a whole bunch of time in my lymph nodes. Yeah, I’ll definitely need the full bore of treatment. No use pretending this could be anything other than cancer.
A flurry of testing and biopsies came next. The sped-up version looked like this:
My PCP checked out the test results and thought it was possible Stage 2. I met with a surgeon who said Stage 3. Cancer in each breast and one lymph node. I had a CT and bone scan and met with an oncologist. My cancer had metastasized. Oh!
Stage 4. It’s “treatable, but not curable.”
That’s a progression of this story I did not imagine. And I imagined a lot. Like what choices would I make regarding mastectomies? How would I handle chemo? What would I do about my hair?
All of that is off the table. I will have endocrine therapy to halt or shrink my many, many tumors.
So, I will die of this, more likely than not. And I don’t think I will be 80 when it happens. But I might be 65 (I’m 60 now). I had planned on retiring at 62 with a pension, 401k, social security, IRA. Hmmm, can I retire this year? Maybe. Four hours after I had gotten the diagnosis, I’d already discussed this retiring idea with my husband and sister because they are my rocks and follow my every thought and find all the positives, but they are also realistic.
My boss is a two-time cancer survivor. He has always joked that I can never retire because of how much he relies on me. I can’t even tell you all the stress he is currently dealing with, and yet he managed to find the room to help me figure this out. We have worked together for over 20 years and have always maintained a strong professional and personal relationship that is invaluable to me.
When I presumed I was Stage 3, I re-read Erin Myers’ blog, The View from the 21st Floor, for the second time, and I re-read Rob McLean’s addendum to her blog about the last weeks of Erin’s life for the fourth time. Rob is a treasured colleague and friend. I also worked with his wife, Erin. I went back to her blog because I wanted to read about someone’s experience with chemo. In the process, I was reminded that she had colon cancer with liver mets, and she died in less than a year at 41.
After my oncologist delivered the news of my diagnosis of metastatic breast cancer, I told her that I re-read a friend’s blog, someone who had died – I didn’t tell her that friend had died within a year… I used to be an actress, and when dealing with an emotional scene, the less you cry, the more the audience will. I guess by me not crying, my audience – the oncologist who had to tell me that I was incurable – cried for me. If I told my oncologist that Erin died within a year, that might have been too hard for her to bear. She was already crying. I didn’t want to make things hard for my oncologist.
Is that weird?
Things are very weird in the cancer world. Doctors and nurses seem so worried for me. I’m all, have you met me? And then I wonder about me. Am I not really dealing with this? Am I in denial and shock that I might have a few years to live? Am I a robot for automatically starting to consider how to retire earlier and how to make sure that Steve has enough money and insurance to live on for what might be decades to come?
Am I weird for thinking a year or five years or ten will be enough?
When my primary care doctor, the one who really examined me at the beginning of this journey, expressed her very deep concern about my palpable breast lump, she said, “How are you dealing with this? I would be in a puddle.” Crickets from me. Then she said, “But you probably knew it was cancer, didn’t you?” Yes, I did. I said, “I’ve had so many friends die of cancer or AIDS or from having a heart attack while walking across the street or because they got the flu with no insurance. At a certain point, it’s not ‘why me?’ It’s, ‘why not me?’ She was silent. Eerily silent.
It doesn’t only happen to other people. It happens to you.
I am in touch with many friends who’ve known me since I was a child or a teen or a twenty-something. All of them will tell you I have already lived a very full life, even those who spent only a year or two with me “back in the day.” But, at the same time, after receiving this seriously fucking bad news, I thought about living another full life. I upped my Vitamin D tablets, stopped drinking so much coffee, started weighing myself, cut down my alcohol consumption by 90%, increased my hydration, boosted my exercise by 50%, and changed my eating habits quite drastically. It was surprisingly easy to do all of this. None of these changes may affect my chances, but they will make my life better during these early years.
I told my longtime friend, Coby Goss, about my diagnosis. I was having a hard time figuring out how to tell people. I knew he would be a good vessel to get the word out slowly and casually. He joked that I probably wouldn’t want the word “warrior” to be involved. He was right. He does know me. It’s comforting to know that people know you. I love the word “warrior” and how it can empower people who are struggling with grief or pain, but I also agree with those who want to take the war imagery out of their experience with cancer.
But, if I’m not a warrior, then what am I? The Tumor Ignorer? The woman who thought one little lump was something that could wait for months and would be taken care of by surgery, chemo, and radiation. I read articles about so many things a lump could be that was not cancer. I clung to those things, even after I knew my lump could be nothing but cancer. Yes, I am the Tumor Ignorer. It’s my superpower.
Am I ashamed that certain unhealthy habits may have contributed to this? No. I am relieved that no one thing is the cause. Not even genetics – I had a full work-up. And even though I was forced to address it, there is no way of knowing if I had taken care of it sooner, my outcome would be different. Not a single medical professional I’ve met with has questioned why I didn’t come in sooner. They were probably trained not to blame the patient. Good call, Loyola!
I don’t know how I would feel if I knew there was something I did to make this happen. Like smoking can be directly linked to lung cancer? I like to think I would accept my choices and live with them. I’d like to believe I wouldn’t regret how I’ve lived my life.
I’m on Ibrance and Letrozole, and I am not experiencing any side effects. My blood pressure is now excellent, I’ve lost 28 pounds. I will retire in September – a year earlier than planned. My investments are in the toilet, but we won’t need them until the market bounces back. All manner of adventuresome plans my sister made for me are on hold because of the pandemic. But Steve and I have made the best of our quarantine. We have been on an organization and purging spree. He shops and cooks and cooks and I eat well.
But still . . . I am very sick. I have an advanced and unpredictable disease. It’s hard for me to get that because I feel great. I’ll get it in due time, like many of my dear friends and relatives have. It happened to them. It’s happening to me. So maybe I’ll be crushing you at shuffleboard in the nursing home 20 years hence, or maybe you’ll be remembering me with Steve Rose* over pancakes in three years. Somewhere in between would be just fine. Here’s hoping.
*If you’ve worked in Chicago theatre, you know who Steve Rose is.
62 Comments
Dear Karen,
I’m so sorry to hear of your illness. But I am so inspired to hear of your grit and determination in your writing and description of your life as it is now.
Wishing you the very best, Chloe Leamon
Love to you, Chloe. We had some wonderful and memorable times. Especially The Club! I loved doing that show. We were mere children.
I loved reading this. Is that weird? I am definitely jealous of the people you refer to who know you so well (that used to be me? I think). They are pretty lucky. All my love ❤️
Oh, yes, of course it is you. One incredible year (1991) when we did Beyond Therapy and Richard III. And we were about to do The Fantasticks when I was struck down by pneumonia. I think you had to drive me home from rehearsal because I was so sick. You were familiar enough with me by then that you knew if I was feeling that poorly, something serious must be wrong with me. I was never sick! I’m making up for lost time these days.
This is what it is to live life without regret. I don’t know that I’ve ever read a story of a cancer diagnosis that is so moving, yet so utterly unsentimental. Thank you for this honest account of what so many people will go through.
Much love to you lady.
Oh fuck. Karen, I’m gutted. I will be sending you every wish of strength and mighty health and miracles. Look only forward and at the present, drink up the present. The world cannot lose a vital, creative spirit like yours. xxx
Hi,
We certainly don’t know each other well, though we have met and know a whole lot of the same people, and I’ve had plenty of opportunity to admire your work and hear others do the same, including Erin and Rob and Steve at various times. So I write from that odd, acquaintance space. Just to say that this is a phenomenal bit of human/superhuman, clear-eyed, self-appraisal/presentation/statement of ongoing purpose. I hope doing it gives you something back, because setting words down always has done that for me, and yours are a huge gift to the rest of us. Here’s hoping, indeed. All the hopes, going out to you and yours.
Where words flow so eloquently from you, I find myself unable to find the real words I wish to express….I am saddened at this but so grateful that we met up in Chicago last year at this time…you cross my mind more frequently than you might imagine and I want you to know that will continue til the end of my days. My love and prayers for time that is filled with all you want.
You cross my mind all the time too, Dribs. Seeing you after so long and still feeling that connection? We had some times, some wonderful times. Nothing on the horizon will compare to those times, but some more beers together in Chicago? Hell, yeah.
Karen, Thank you for sharing your journey. You and I were in.many of the classes in junior and senior high school. You were adventurous and funny, and always comfortable in your own skin. Congratulations on choosing your own path and sharing your story to inspire others. I hope that you journal your experience for yourself and maybe for your family and friends. I am a big believer in prayer, so please know that you have one more prayer warrior on your team. God Bless, Deb Przywara Myatt
Thank you, Debbie! I l am enjoying this time connecting with supportive and encouraging friends I’ve had since forever .
Now I can’t get Steve Rose out my head.
Roll with it, Johnny.
Beautifully honest. Big-big love to you.
I can’t reply to what you’ve written just now, as beautifully written as it is. I can’t absorb it. All I can say right now is, I love you, Karen.
Fuck fuck fuck fuck. I fucking hate cancer. I hate that you’re such a good writer and have shared your feelings so well. I hate every word of this posting.
You win the award for the most “fucks” in a comment! I look forward to eating your cooking once again and general hanging.
Karen,
I am sending my love. I am floored at your courage and marvel at your letter.
Stay determined. I am wishing you all the very best. XO
This was beautifully written and took my breath away.
Because it’s happening to me too.
I am sending you so much love.
Jeri Lynn
Dear Karen,
I love you. I’ve not seen you in years, in forevuh!, but I just love you. Thank you for sharing your journey with humor and humanity. May you live life fully – with the bounty of your dinner plate, may you be surrounded by great love & light, and remember : we once performed together wearing balls on our heads that children normally bounce on playgrounds. Hey-oh-hey-oh-hey-oh!
Kevin xoxo
PS : Hi to Steve, should he remember me. Should he not, hi anyway.
Goddammit. Fuck cancer. I hope you feel great for a hundred years.
Thank you for your words, Karen. And for your everything, in fact. Love to you and Steve.
Dear Karen:
Oh fuck. I’m remembering…Phantom Tollbooth at Lifeline and all the attendant laughter and partying. Beauty, scathing quick wit, tenderness, walking in time.
I think about you often with Steve and all your pups. Thanks for sharing your story of where you are right now.
Love,
Maggie
Ps: now I can’t stop thinking of Steve Rose…🤪
I am killing myself right now trying to remember a word you said during that show. A French word where you deployed the extra syllable with impeccable timing. Martie Sanders and I have found ourselves at gatherings through the years. People ask how we know each other. “Oh, we played the Princesses of Rhyme and Reason in an adaptation of the Phantom Tollbooth.” Everyone immediately figures out which one of us was Rhyme and which was Reason. I’m going for a blend of the two in the future.
Macabre. That was the word. Phew! Glad I came up with that before I tried to go to sleep tonight.
Karen! I’m in Southern Illinois shouting up north to you that I love you! Your warmth, grace, and humor shine through your message to us. Thank you for sharing it! You have never been far from my thoughts but now you will be closer than ever. I root you on! Time to blow up the TV?
Gigi! I heard your shouting and I felt it. I was also reminded that Blow Up Your TV is a great fucking song.
I’m smiling. My brave wonderful friend!
Karen, Thanks for sharing this courage, this clarity, this weirdness, this strength, this you. I know you better now, and feel honored. I wish you wholeness and healing and lots of laughs in the middle of whatthefuck, as many as you need.
Cheers for all you are!
Karen, would it be obnoxious of me to give you possible things to blame this on? How about the damn fire escape at Porter? Or some invisible residue in the ambulance? Or the mud in the dressing tent after a rain? I know we haven’t been in touch much but I love you and I’m here if you ever need me.
That damn fire escape! It caused a lot of problems. But the tent and my beautiful 1963 Cadillace ambulance? Hard to believe they caused anything but treasured memories.
Kruegs —
Looking it square in the face – I would not expect anything less from you. I wish you love and good fortune all the days of your life despite this fucking road block. You will always be a wonder to me. Love you always. Xoxo Toby.
Tobes! I remember when you played Pachelbel’s Canon for me in your dorm room. I had never heard it before. Hmm, I might want to put that music on again. Love to you!
Kruegs —
Looking it straight in the eye – I would expect nothing less from you, old girl. May you be filled with love and joy all the days Of your life despite this fucking snow hook. My love to you now and always – xoxo Toby
Thank you for writing this (and honestly, for all the things you’ve written through the years). The clarity and strength that anyone can see in you, shines through in this piece.
We love you.
Krueger- how can we be 60? Weren’t we just 16 and Aides — Luke’s Cool Hands… I hope you make a trip to the Berkshires… to revisit some of those amazing CCC memories. There’s a warm bed and open arms waiting for you to come back and visit… sending you love… “my friend, I will remember you, think of you, pray for you. And when another day is through, I’ll still be friends with you…”
Karen – your writing is so beautiful. I’m sad to hear this news, but so glad to share this planet with you. Much love to you and Steve.
Wow. that was really honest and powerful.
We are people of the theatre, and thus we’re used to the idea that people whom we adore come in & out of our lives. You are one I’ve repeatedly meant to connect with again. We’ve only seen one another very few times over the last several years, but each time has made me wonder that I don’t schedule occasions with you more often.
This is excruciating news, and you know me: I have a great deal of trouble NOT crying, so no worries, I am & will be doing so for you, but I also send you the vibrations of miraculous …well, not healing, so I won’t play that silly game, but… the tenacity I recall from the center of your being that will surely be saying, “Nah, not done yet.” You are clearly & bravely charting your exit, and -like you- I believe it can be longer than the experts almost need to say.
I hope to see you when doors are opened for me to do so.
The world needs you in it a whole Hell of a lot longer, so to your cancer in such a rush, I say, slow down, smell the roses, and NAMASTE, MOTHERFUCKER. <3 <3 <3
You and I both flooded the stage with tears during Brad’s final appearance of Wonderful Tennessee. Perhaps it wasn’t our most disciplined acting performance, but there was no stopping us. I’m good with that. Namaste motherfucker, indeed.
Lough Derg…
People went there to be cured?
To remember again – to be reminded.
To remember what?
To be in touch again – to attest.
In touch with what?
Whatever it is we desire but can’t express. What is beyond Language.
The inexpressible. The ineffable.
‘Remembering becomes a synonym for healing’
Wonderful Tennessee (1995)
Bless you.
Brad. See my reply to Ms. Cury’s post. Are you trying to make me drop buckets of tears again? I went to Ireland last September. I went to Donegal.
Karen, Shittyassratfuck, as John Howard used to say. This news and the way you have delivered it here are breathtaking. I’m sending you love and am grateful to have been in your orbit for a little while.
Karen, I haven’t seen you since camp days but you still have that spark and I can see your shit-eating grin that says “I’m gonna find the humor in this”- and to echo Amy, Open the door and come on in, I’m so glad to see you my friend. … If you can make it back to the Berkshires, a raucous reunion awaits you. Peace to you and Steve.
Thank you for your honesty and being brave enough to share this with us. I have always looked up to you as a strong women and talented artist. Sending all my love to you & Steve.
Fuck cancer and the fucking horse it rode in on.
“And the horse it rode in on.” I snorted my beer. Maria, I look forward to seeing you out and about and at the Moon, soon!
Karen, I’m sending you and Steve all the love in the world. Your words are so powerful and I’m so grateful you shared them with us all. It sounds like you’ve got plenty of support already, but seeing as I’m on the board of directors of a breast cancer foundation I’d be remiss not to mention that if you need anything at all – connections with and/or resources from the breast cancer community, I hope you won’t hesitate to reach out. I’m also sending you all huge virtual hugs.
Dear Karen,
Thank you for your candor. Thinking of you and Steve.
Missing you both, Karen, and sending all the light and love that I can. Reminding us all to live life like you mean it….
Thanks, Peter! I remember you telling me, after the opening of Old Man and the Sea, “you made my wife into an athlete.” Well, it wasn’t me, it was the process. I don’t do push-ups anymore, but I do plank. A ton of great memories from that show. Love to youse guys.
Not surprising so wonderfully written. I haven’t heard a Beatles song in 40+ years without thinking about you. Wishing you all the best in your journey ahead!
Stuart! You are definitely one of those people who can attest that I crammed a ton of life into a few short years “back in the day.” I’ve been thinking of how we made the most of a one-month teacher’s strike. But at least we got a graduation at the end of it, even if it was late. Sorry for all of the students who are missing the milestones.
My sweet. My dolphin:
So hard to express what I’m feeling—I want the physical, the hand on the arm, the look in the eye, the tight embrace—but none of that is happening to anyone these days. Your writing is clear-eyed and evocative and so quintessentially you, and I know you’re going to live the hell out of the rest of your life. And no one knows how long that will be—my 76-year-old mother got a diagnosis of Stage 4 Uterine in 2013, it wended its way to her liver and urethra, but she’s doing really well on fulvestrant with no side effects and has kept the cancer at bay. She’s tenacious, and so are you. Love to you and Steve.
Laugh at tree beer in America, my dear friend. I will send you more near nonsense and love soon, to the best of my unreliable abilities. You are wonderful; you fill (ful) me with wonder.
Karen, this just luminous. I’m speechless. I will be thinking about you with a lot of love. I know you have become a fine actress, but to me you are always Snoopy. Abbraccio. ~ Bert
Snoopy loves Lucy!
I would like to applaued you for putting your personal story out there for the world to see, and to see how your handling it with such grace and acceptance. You are an extrodinary woman who’s zest for life is inspiring, even through this unfair illness that you were dealt. Thank you again. Will be praying for you.
Dear Cousin Karen,
I love this story and I ❤️ you.
//Lynne
This piece makes me comforted, hopeful, mournful and aching. As usual and as expected, you give clarity to even the most difficult of situations. Thank you, Karen
I’m trying to Act like I didn’t just read this.
However, I did.
I’m glad you kept the name
Darling, you are by far one of the bravest and most interesting people i have ever know.
hugs, hopes and prayers
j