Playbook for stage xx cancer
It might be cancer. I have two more doctor appointments on Tuesday and maybe even more after that. My mom is coming to Boston to go with me so I am not going alone. My brother comes three days later.
I’m so tired. I think back to how I used try to write blog posts while breastfeeding. I was so tired then, and I still wrote. I am telling myself to just write. Just keep writing.
The hardest thing about cancer — before your life and every life close to you is twisted — is not knowing what to do with the time you might have left.
Here are some things I do know:
If it is cancer, it’s esophageal cancer.
Crap. I’m going to have to write a list. It’s the only way I’m going to get through this post.
4 Ways to Know if it’s Esophageal Cancer! (The last one will really surprise you!)
1. You were bulimic. Esophaguses shouldn’t have junk from our stomach messing with it. Too much mess leaves an cancery residue. This is not medical school, this is listicle school, okay? So cancery residue it is.
2. You stop eating solid foods. This is something that is unintentional, it just sort of happens. I guess I just told myself I really like liquids. Then I thought to myself it’s weird that I can’t eat rice anymore. I tried putting butter on it and I still couldn’t get it down. I ate slower. Smaller bites. I just couldn’t eat rice. And then I had to throw it up to get it out of my throat. But nowhere did it ever occur to me like MY THROAT MIGHT BE FULL OF TUMORS.
3. You cough a lot. I’ve basically been coughing since I got Covid in February 2020. I thought I had long Covid. They told me no it’s probably COPD even though I still don’t know what that is. Then I thought I got Covid like five more times. I started thinking maybe I’m coughing from stress. Maybe it’s psychosomatic. Do you ever hear how people used to explain the weather by making up stories about ancient gods? That was me with making up stories about my cough.
4. You were at the World Trade Center. Yeah. This is a rare cancer that is linked to people who were in cloud of dust when the towers fell. The dust that blinded my eyes and coated my insides. I should probably save this part for my annual 9/11 post but what if I don’t live that long.
Anyway, now I’m thinking about Hubspot, which is the very expensive software I pay for that I can never decide if I’m actually using or not. I think I shouldn’t use it. If I want to sell someting I can just post it on my blog. I can’t stand all the segmenting and the targeting and the A/B testing. It’s so not my style. Plus, it’s probably hard to be selling stuff if I also have to be writing about dying.
At least I need to find out the stage I’m in. Of cancer. Like, do people sell stuff to their email list at stage II but not stage III? Has someone already liveblogged stage IV? I think I might be doing that now, because I looked at what does it feel like when you start dying of esophageal cancer and I feel like that.
I can be flip right now because I cried with Melissa.
I’m trying to stay normal with my kids. I did throw a plate. I mean I don’t want you to think that it’s all fun and games here. Actually I threw two plates, and also a lamp.
When someone someday is writing their dissertation on me, they will feel compelled to compare the lamp throwing incident in Boston with the lamp throwing incident on the farm.
Just forget that, okay? I’m doing it for you. Some things never change. And when it feels like the world is closing in on me and control is slipping away from me that’s when you’ll find me being me, desperately trying to destroy it all first.
You know me. I love porcelain. So I destroy it. That’s a solid reading of my life right there. It’s just too bad that people who live with me also live with divots in the floor.
I know the obvious thing is to not think in terms of dying when no one’s even told me it’s imminent. But I think imminence helps us make good decisions, and I know I can’t afford to waste any of the days I have left.
I’m sorry you’re going through this Penelope, I can only imagine the range of emotions you must be feeling. I hope that it’s not in fact cancer and that if it is it is treatable. Please keep writing. For you, and for us. I don’t comment much because I’m not a person who feels like my opinion necessarily matters or adds to a conversation (or that the effort to write something out is worth it), but I have read your blog for many years now. You are a trailblazer, quirky and intelligent and forward thinking. Sending you love and healing energy.
As an aside- if you do have esophageal cancer- apply for social security disability benefits right away! Esophageal cancer is an instant allowance with diagnostic results https://secure.ssa.gov/poms.nsf/lnx/0423022155
If you have any questions about this feel free to email me. I used to work for disability determinations (I quit to be a stay at home mom! You’d be proud lol)
Rezo por vos” is a beautiful song from Argentinian musicians. I am praying for you.
As always, Penelope, your writing is amazing: riveting, heartfelt, and witty – even when focused on a personal, scary situation. Thank you for sharing your talents. I’m praying for you and hopeful that it is good news this week!
I’m sorry you going through this and glad you have in person support. Hopefully it’s good news. The first comment was both kind and helpful.
Writing does seem to help you so I hope you keep going.
I’ve been thinking about you and hoping you were OK. I did not expect this
I’ve been following your work for years, ever since I relocated to the US and began homeschooling my children (one of whom is a cellist). It’s remarkable how one can develop a sense of familiarity with someone simply by reading about their experiences, even without direct interaction. Please continue to keep us updated; let us know what you need right now.
So sorry you’re going through this, hope the news is good, keeping my fingers crossed! 🤞
Hi Penelope,
I’ve also been reading your blog for years probs since 2015 if I had to guess and just wanted to reach out to say if it is Cancer I hope you’re in an early stage and it’s treatable. My partner currently has bladder Cancer, so I know how distressing and scary it is for both you and your loved ones.
I’m also a charity consultant by trade, and I’m currently working with a renowned cancer charity here in the UK – Writing a report on the cancer experiences of women of colour. So if ever you wanted to reach out, please feel free to email me with the DM I’ve provided.
Also kudos to you for continuing to write despite going through this uncertainty. I’ll be keeping you in my prayers and thoughts.
Stay strong xx
I’m so sorry to hear this. I pray, if it is cancer, it is treatable.
Penelope, I really hope that it’s a false alarm and something completely treatable. But if it isn’t, I appreciate your writing no matter how dark, how honest, how raw. And I hope you get the best in-person support that you’ve ever had.
As I read your blog post and learn about the personal information you’ve shared, I sincerely hope and wish for you to have a strong spirit to cope with whatever illness you may be facing. Be brave and resilient, and know that you have the love and support of your loved ones as well as your readers who will cheer you on. Stay strong, stay positive, be courageous, and know that you are surrounded by everyone’s love and support.
Really sorry to hear this health news. We care about you. I hope you will keep writing whatever you want. Sending healing wishes.
Hello Penelope,
I am sorry. You have my condolences in these trying times.
I am fine now. Before that, someone told me, “You’ve had a good run,” and I decided that was true.
Some folks with cancer told me they were not dying of cancer, they were living with cancer.
I hope you keep writing for as long as God grants you time on this earth.
Oh. Wow. I’m sorry, that’s really shit.
Its hard to know what else to say. I hope you and the kids are doing as well as can be expected in times like this.
Thinking of you all.
Hi Penelope
I’m so hoping you don’t have cancer, and as a bladder and pancreas cancer survivor, I have a few immediate thoughts:
1. Yes, go for early Social Security, and if the SSA takes longer than sixty days to process your paperwork, when you call to complain, they will actually give you the phone number of the person who has the paperwork on their desk. Don’t bother calling any SSA numbers before sixty days because they will not answer/call you back/help you out.
2. If you want to find your tribe of esophageal cancer survivors (and we’re called survivors the same day we get our diagnosis), try Instagram. That’s where I found so many vibrant, intelligent, and knowledgeable pancan survivors, and it’s those survivors who have given me useful information. They’ve also broken my heart more than once, but that’s how it goes.
3. Once I received my Stage 4 diagnosis I focused on selling my higher-value items, especially those that I knew my husband would not be able to easily put a price on. I wanted to make my estate easier for him.
4. Any stage of cancer is not just that stage. (Okay, that’s what I believe, not what a doctor will tell you.) I believe that Stage 4 is actually Stage 4A through Stage 4ZZ or 4ZZZ or 4ZZZZ. There is a lot of room to live with cancer.
5. Finally, and having been with you since the Brazen Careerist days, I know this will be hard for you, but maybe don’t over-research this? Maybe go with one recommended surgeon/oncologist, get a second opinion, and then settle into the system? Researching may not bring you the comfort it always has in the past.
Here’s what you’ve got to tell yourself: You’ve got this!
Ana.
I love this advice. The 4A 4Z is a great way to think. And also, the advice to not research: you know me so well. Thank you.
Penelope
Hi Penelope,
I’ve been following you since your Brazen Careerist days too. Back then I was a chemical engineer – 15 years into that career my mom was diagnosed with late-stage ovarian cancer, she moved in with me and I took care of her for 3 years. After she passed away it made me rethink my life path a little, and I ended up going back to school to be a nurse. I’ve been an oncology nurse for a couple of years now, and while I haven’t had cancer myself, I’d say the advice above is superb! I hope its something benign, like EoE…but if it is cancer, an oncologist that you trust and have good conversations with is so important…someone who will present you with options and let you make your own decisions. Most of them follow the same treatment pathways so the main difference between a great oncologist and an average one is how comfortable you feel discussing really serious topics with them. 100% don’t over research it, especially on the prognosis side of things, because everyone is different…more important than the statistics is really tuning into your own body and what it’s telling you. With every health quirk I’ve run into myself, I use Western medicine to start with, and Eastern medicine to get myself off of the Western medicine…that’s not to say I believe one is more effective than the other, but I have spent some time working with a yoga therapist (different than a normal yoga instructor) who has worked wonders for me! Wishing you all the best on Tuesday and all of the days between now and then – the anxiety waiting for answers is rough. Hoping you’re able to find some peaceful moments in your weekend <3
Ana this is really amazing advice. Thank you for sharing.
You’re welcome; I hope you never need to use it.
PENELOPE, I looked up to you and your work and writing for so many years. There were things you said that stood out so profoundly to me… I aspired to someday be like you and to be able to afford your coaching or services from you
Life has really caught up to me.
I am an ENFP who has the PTSD condition from becoming used and abused, abandoned by family during covid.
Time does crazy things to me now. Whole years pass without my understanding. In the back of my mind, I always hoped I’d get myself at the right place and space of mind to deserve your services.
I hope you’ll try immunotherapies and other things of the like watch comedies (laugh so hard) and try to relax the state of all of your cells… encouraging them to be healthy!
I so wish to have the privilege of knowing you, Penelope.
I will pray. I will pray for your life and your extended legacy… !
Checking in daily (or more than daily tbh) for an update. Breast cancer survivor here – from 2009 and doing great. Lots of support/love and a little advice to give if you do have it to deal with. Reach out any time. And please post soon – a lot of us are holding our breaths for you, with love.
You have given so much of yourself for so many years – to the many of us who read but do not comment. Let us give back to you if this turns out to be a time of need. But I am hoping it isn’t.
Dear Penelope, I am very sorry to hear you are poorly! I found an article that sums up how I feel about food as medicine:
https://marypoindextermclaughlin.substack.com/p/freedom-from-foodogma-the-food-wars
“I think this is why both diets have such significant success rates; they’re characterized by strong, focused belief and elevated energetic resonance.”
My husband thinks all plants sing to each other. We just don’t know this world we live in.
But if you can find a route that you feel passionate about, it will work for you because My God do you have focus when you need to!
I have a belief that stress and cortisol exacerbate health issues. So please try making Dr. Davis’s L. Reuteri yogurt, which cuts cortisol by 50%. My sister hates the flavor, but I like it and it slides down beautifully.
I love you and I will try to write more. love from carol
Long, long, long time reader. I had a traumatic brain injury and was due to die. But I internally said fuck that and pulled it through. Life is too short to be lived with regret. Thoughts are that you will pull through as well * hugs *
(Sorry I have aphasia and I am not communicating very well sometimes)
Hi Penelope,
This is terrible news.
I, like so many others, have been with you for years, I think it’s decades, so this hits us hard. You have always been such an outspoken and challenging person. I love the way the norms don’t apply to you and I’m hoping that you’ll find a way out of this one too.
I don’t have any advice for you because this is so far out of my experience but if you have any writing left in you, it’s worth putting down as many thoughts and memories as possible for your children. They might not be so interested now but they always become more interested as they get older.
Sending thoughts and prayers from Australia.
Hi Penelope,
Your writing, as usual, is brave, honest, funny and relatable. I hope you’re able to marshal all the resources it takes to deal with this new challenge. If you can reduce anxiety, consume a good diet, exercise and try to enjoy as much of life as you can, it may help with various aspects. Other than that, carpe diem. And as much luck and grace as I can send your way.
This is a lot to take in. I wish I had something wise to say that would help you feel less anxious.
I am so touched by comments here from your readers. Such an outpouring of love and great information. I too am a long time reader (since Brazen Career days), Penelope, and my heart is with you too. You are originally and authentically yourself, courageously so, and you’ve long inspired me to do the same. Waiting for diagnosis is hard. I’ve been there, and what has helped me is to remember that cancer survival rates have increased significantly in the last 20 years. Oncologists have more tools in their toolbox than ever. Anyway, I like the advice to watch a lot of funny movies this week. Also, get outside and BE in Nature. Sending hope and prayers…
This sucks. When my sister got pregnant easily while I was still dealing with infertility, I threw all our bread plates against a cement brick wall. Like frisbees. Zing, zing, zing. Autistic here. Not sure how to relate other than to share stories. Hoping good things for you.
Sorry to hear this, I really hope it’s not cancer. Something tells me though, that’s not your concern as much as if it is, what about your boys…. You got this, no doubt!! However, you’re really more worried for your children
I’m so sorry to hear this. I really wish you could catch a break. It seems like life just keeps hanging you one curve ball after another and you always take it with such grace. I’m praying for you.
I love you Penelope. You’ve contributed so much to my understanding of my self and my life for such a long time. Thanks for hanging in there. I’ll miss you if you go away.
I am so sorry, Penelope. I hope the plate smashing helps. I think they have businesses for that now! But in all seriousness, I hope you’re okay. I’m glad your brother is coming.
I hope you get answers soon P.
I found your blog in my twenties. I’m 36 now, you guided me through kids, career, divorce, autism and creative writing.
This absolutely sucks. You don’t need this, no one needs this. I’m sorry.
If you ever want to chat about how best (and most authentically) to use your CRM, let me know. 💖
Congrats on getting the care you need.
Hi Penelope. I’m so sorry you’re going through this. A relative of mine had esophageal cancer when she was 78. She had an endoscopy the same day she saw her doctor. They told her what it might be but they had to confirm it through testing., which they did. This was 23 years ago and I’m sure they’ve made many advances since then. I also wouldn’t use Dr. Google too much to research this. Each person is different and the numbers they put out there don’t factor in will to live, attitude, religious and philosophical beliefs that can all have a big impact et. I did find this article about an approach they use at Sloane Kettering that might be useful. https://www.mskcc.org/news/breakthrough-people-facing-gastric-and-esophageal Hang in there! Sandy
“The hardest thing about cancer — before your life and every life close to you is twisted — is not knowing what to do with the time you might have left.”
Concur. I’m dying from squamous cell carcinoma, originally of the tongue, and a clinical-trial drug is keeping me alive—but I don’t know for how long: https://jakeseliger.com/2023/12/19/what-if-things-go-right-with-the-carcinoma-treatment-how-long-we-expect-to-live-affects-how-we-live/.
Hi Penelope, I really, REALLY hope that’s not the case. I just wanted to add we’re all rooting for you, and that you are really important for us – even if we just know each other virtually. I don’t have advices to give, I can just send you a warm hug.
Sending hugs and I hope you feel the warm snugglies from the comments section!
I’m thinking of you and wishing you well wherever this path leads-
Xo
I’m hoping for an update. Again, so sorry you are going through this.
Hi Penelope, I’m a longtime fan and former client of yours, too. I was diagnosed with cancer last year, so I empathize – this period of time before you know what’s really going on and before you know much of a plan – is the worst. I hope it’s not actually cancer, but even if it is, one nice thing is that you will get a nurse navigator to explain everything and do all the planning and appointment scheduling for you. Plus, the scientific advances made in the last five years (thanks to the COVID vaccine research) are absolutely amazing. There are lots of new drugs released each year, and even better ones are in trial right now. Even cancer vaccines! So any statistics you see online are probably out of date/inaccurate. I’m sending all my positive energy your way.
any updates?
Thank you for sharing this with us. I check in once in a while to see what you are up to and what you are thinking about and did not expect this.
Goodish news on her Patreon. She has ‘oddities ‘ showing up on her lungs rather than cancer. I’m sure she will post about it here soon. Patreon posts tend to be shorter
Let me add my best wishes for you and your family.
I’m so relieved that you don’t have cancer!
Last year, my dermatologist did a whole-body exam and found a strange-looking growth on my back.
Right then, I started worrying.
She had me come back for a “punch biopsy” and sent the sample out to be tested.
It turned out to be just an unusual but harmless growth.
I found that waiting for results was tough–I couldn’t take a break from worrying.
As Dr. Pimple Popper on TV says, “Skin can do some crazy things!”