My (perhaps controversial) thoughts as a "newbie" to CA.
What an intense time!
I found a lump on my breast on my birthday--October 31. A fun Halloween party ended with this nice birthday present.
I hadn't had a mammogram in 13 years and know this was risky but the last two I had they called me back and it turned out to be nothing...shadows, etc. But it freaked me out so much I couldn't do it again.
Anyway, here's a lump. Had a mammogram last week and biopsy Monday and here it is Wednesday and I learned from my doctor it's IDC. I think he said no estrogen or--is it progesterone?--anyway, no receptors for either. The lingo is still new to me....
Here's the thing for me.
I'm 72. I have no one dependent on me but my lovely cat, Pantaloon.
I was hoping this would be DCIS and that a lumpectomy and some radiation would do the trick.
But now I think--I see oncology doc Tuesday--it's gonna be more--more than lumpectomy and radiation--more like extensive surgery and radiation and chemo and hormonal also.
I absolutely hate the idea of chemo--there is nothing worse to me than nausea and vomiting. Nothing. Give me aches and pains, strains, cuts, stomach aches, headaches, toothaches, severe stiff neck, groin strain--I can take them in triplicate. But the nausea I suffered after sinus surgery and general anesthesia was the worst I think I've ever known. I literally could not move an inch I was so ill--like the worst food poisoning in the world.
So this evening I've been going over and over things.
And a part of me wants to do---nothing.
To let nature do her thing. Yes, I know this means growth, spread, and death--but that's going to happen anyway.
I look at the tests, the surgery, the meds, the appointments, the destructive reality of radiation, the chemo that's going to shoot my entire body into a (poorly) defensive posture, the floppy old magazines on waiting room tables....
I think of the anxiety, the bland food (which sinus issues can lead to--no sense of smell=no sense of taste=no fun), the hair loss, the irritation, the low moods, the no-energy (but, perhaps, no good rest, either) and that handmaiden to any illness, that infernal guest: patient, inevitable depression.
All that trying for something, battling for something, but living on the knife-edge of Not Knowing If It's Gonna Come Back.
I like the idea of having some control over what's happening--knowing that it's my choice that's leading to my decline and end.
I decided not to have those mammograms, and had 13 years free of that anxiety.
There are worse things than death, and living in the purgatory-like limbo world of Will These Treatments Work That I AM Suffering Through? to me would be--hell. I've lost loved ones and dear friends to cancer over the years--and followed their courses of treatment...
Do I want to go through all that to gain, perhaps, a two-year extension to my life? Or do I want to just accept that--OK--I have a fatal disease?
I paced my living room after speaking with my doctor and thought:
"What if I just look at this as an incurable disease that I will learn to accept and deal with day to day? I've lived a good life and today am energetic and otherwise in good shape. Do I really want to battle at this point? Maybe I'll do better if I treat this diagnosis as if it were no different from ALS, MSA, Parkinson's, Alzheimer's? Maybe I'll find more peace by accepting cancer than from engaging in a war with it?"
I realize that this runs counter to the prevailing thinking, and know that the oncologist is gonna frown at me next week when I discuss this idea with him (if I get up the nerve). I know that there are thousands of sites discussing breast cancer and all that surrounds its treatment and diagnosis, and these are great. But few sites extoll the good that can arise from acceptance.
I want to enjoy the time I have left. To be the one to--let it be. To know that I am turning myself over to nature herself.
(Of course I would undoubtedly be seeing this differently were I younger and my heart and prayers go out to the fighters and the survivors of all ages.)
Who knows what gave me--us--this? They still haven't pinned down what cause the thousands of cancer types that exist. If there were proof-positive treatments--like drilling out decay from a tooth and filling it with a replacement will take care of a cavity--that didn't essentially poison the body in the process that would be a whole different matter entirely. Cancer is so manifold and mysterious a malady they can never promise a cure. Not yet, anyway.
Thanks for being here and letting me run my thoughts by an audience of the interested tonight! Glad I found this site to air them!
I still don't know what I'm gonna do and wonder if these racing thoughts are due to shock and fear. I may turn 180 degrees onto the other side. But for now they give me a sense of peace and calm that I haven't felt since--I felt the lump.
I wish the very best for all of you and would welcome any thoughts or comments you'd like to offer.
Comments
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I think your feelings are entirely valid. I think if I felt that way I would wait to see more details when I had my appointment and I would give it some time to think about it. I would refuse to be rushed into making decisions until I was ready. I might consider doing a lumpectomy only if I were still determined not to do any further treatment. I would also be very up front with the doctor about why I felt the way you do about nausea, etc. and see what they have to say, because there are definitely ways they can much improve your prior experience. I think a lot of women here will tell you that treatment was not nearly as bad as you are envisioning
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Well, for starters, don't get all worked up about chemo - it is doable and not like a 1970s soap opera - I had pretty tough chemo and didn't vomit once, not once and most people on here will agree with me - there are meds out there now to handle that nicely - don't get me wrong - breast cancer certainly isn't a party but it is doable and I think right now you are in shock (as most of us were when diagnosed) - I live alone too (but with my trusty dog Penny) and have no close relatives left so I know something about your thinking process, is there anyone like perhaps a social worker you can talk this over with? It is, of course, your decision and you'll make the right one for you. Sending a hug, S.
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You are right, it is an intense time. And the worst part really is at the beginning when you are bombarded with information & then have to try to make rational decisions in the middle of a tornado of emotions.
What did they say at your appointment yesterday? If you are willing to share, we will try to help you wade through the information and can give you some tips about things that helped us make decisions, and helped us through various treatments as well.
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Hi Trill!
Sorry to see you here, but glad you found us.
When you see the oncology doc, make sure he understands what you're thinking... My experience with oncologists is that they are very open to the various approaches and helping you understand the ramifications. Talking with you about the likelihood of various outcomes & risks if you do this, over doing that. And then allowing you to make the decisions.
You do not have to make the decisions when you are in your appointment! You have time to think and consider your choices. (BC is a slow beast. Talk with your onc., but generally weeks, sometimes even months are fine for you to take to make decisions.)
I'd consider asking his/her office staff in advance if you could record the conversation so that you can really ponder the decisions you'll need to make. It's very hard to hear, comprehend & retain all of the information that an oncologist can throw at you in an initial appointment. If they say no, see if you can find a friend (or possibly a "nurse navigator" from the center the doc works out of) that can be a second set of ears and a notetaker for you.
BTW, my mother (diagnosed at 72) made very different choices (lumpectomy & femara--but no radiation & no chemo) than I did (diagnosed at 48). My Mom's oncologist was perfectly ok with her making decisions that factored her age into her choices.
Once you hear what you can reasonably expect from treatment in 2015/2016 (vs. treatment when your friends were treated) you may well make other decisions. But it's all up to you, and we will support whatever you decide on.
HTH,
LisaAlissa
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Such a scary time diagnosis is. And you were brave to post a potentially controversial thread.
Pursuing no treatment is a valid option. It's a valid option for all of us, really, but we follow doctor recommendations as if they actually have the answers. We hire doctors--they're our employees--and they can make recommendations, but the decision is ours. Don't be afraid to tell them what you think or ask questions you want answers to, though I know it can be intimidating.
I'm 49 and not pursuing conventional treatment beyond surgery (I am using alternative treatments), so I totally understand why you would not want to put yourself through all of that. There are no guarantees with or without treatment. Each person has to decide for themselves how they want their life to be after diagnosis.
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Trill1943,
I have extremely intense nausea after general anesthesia. So much so that I cannot even hold an ice chip down without vomiting for a minimum of 8-10 hours after surgery. No exaggeration. I kept telling people and nobody listened, until an anesthesiologist finally listened, and there IS general anesthesia that they can give you which does NOT cause nausea. During my last surgery (removal of my ovaries), I finally had this particular drug (whatever it was) but when I woke up I did not have any nausea! I would ask for this. My veins did burn when they gave it to me and it was painful for a few seconds but who cares, I had no nausea. I believe the gas they give you through the mask causes the most amount of nausea during the surgery. So, please ask for this other drug for your surgery, if you do decide to have one. It does exist.
As for chemo, I had one of the most intense - dose dense ACT. I will tell you that I had minimal nausea because there are extremely strong anti-nausea medicines now that you can take for the first 4 days of each chemo treatment.
Another story, I had my port placed with absolutely no anesthesia (other than entirely local) only because I knew I would get nausea if they put me in a "twilight" state. I did not want to do that. Best decision ever. I was able to walk away from it in about 30 minutes and eat anything I wanted as opposed to not being able to hold anything down for the rest of the day. I had a wonderful conversation with the interventional radiologist throughout the whole procedure.
Whatever you decide I wish you the absolute best, and I am sorry about the diagnosis.
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Thanks so much for this feedback. It's like handing a grounding wire to my hyperactive brain at this moment! Yes, I need to calm down and let fight-or-flight (which the Let It Be mindset may be springing from...) rest. Take a breath. No--wait--breathe in the FIRST place! Gracias.
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Thanks for your understanding thoughts. I do have a supportive group of friends and see a social worker weekly--and she's great. I live in a building full of senior citizens and my therapist works with them and she gave me this October Time magazine about the latest thinking on over-treatment. But that's directed at DCIS more than ICD.
Will sort it out....eventually...
To Penny and Pantaloon!
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Thanks for your words!
Well, my doctor called me today with the path results. He read out some things I know nothing about but I do recall that he said nix for estrogen and the other hormone receptors. I asked him what that meant and he said it relates to types of chemo that would be chosen. At that point I froze. The old chemo hatred thingy.
I'd love your help--anything would do me good, especially from such a knowledgeable and generous base of gals with this same disease or who know lots about it.
I'll get back to you on the site as things progress. Thanks again and--
Onward!
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Hi back to you! Thanks so much for your very understanding and helpful words. I've calmed down a bit since I aired my thoughts here a few hours ago--and also finally got something to eat. I might be able to wrangle out of my stuff a device that will record. I hear that Dr Friedman's nurse is very good, so maybe she could help me with the information I know he's gonna send my way. And I almost always feel I have to make a decision there on the spot--but I know now I don't have to do that. Am gonna run by him how I feel.
I'm glad to hear that your mom also elected to have less done....
Will get back to all of you really great people down the road....and thanks again...
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Thanks for writing. I'm glad to get your perspective on what has to be one of the most intense happenings a life could experience --followed by all the various treatments, or no treatments, that have to be made...
I just found myself today settling into a peaceful place when I recalled my cousin, who's suffering from Multiple System Atrophy--an incurable and ultimately fatal neurological disease they thought was Parkinson's for a long time and is similar--and how she and her family are calm within the storm of it, so much because it's an admittedly fatal disease.
But cancer is different--and the treatments are in their own way seductive, luring you to them as though they are cure-alls. When, of course, they aren't--nor do any doctors promise.
After spending hours with my cousin, I thought: It's not the Fatal about it that's hard to bear, it's the Hope. Hope for a cure one day. Hope for a remedy....
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I do appreciate all this information! Wow, you have tackled the problem head-on. When I had sinus surgery I was not only nauseous after, but as soon as I came to in the Recovery Room I thrashed around on the table like a snake caught on a rake! It was horrible! And the nausea and general misery persisted after my friend came and got me and I literally staggered back to my apartment. I think that because the surgery was 3 and a half hours long and I had to be out for that long had a lot to do with my problem. But I've always had a bad reaction to anesthesia.
I'll remember all your advice.
Thanks again!
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TRill1943 - You don't have to make a decision today. Tell your oncologist all of this. Ask him/her how much difference each additional treatment will make in your prognosis. If you are estrogen and progesterone negative you won't need the hormonals. If the IDC tumor is really small, chemo might not make that much difference, and I didn't get sick to my stomach once during chemo, the anti nausea drugs these days are amazing, food did taste really crappy though. Make a list of your concerns, maybe even print out your post above and ask him to address these issues. At first it's really overwhelming - but this site is a great place to get info and support! God bless you, Linda
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Hi--
I'm new to this site and went ahead and responded to all of your generous responses one by one--where it said Post a Reply--and then hit Submit. I see that my responses to you individually all show up at the bottom. I'm sorry I didn't individualize by putting your names with my responses. I hope you can sort them and from now on I'll know better. Trill
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Hi LindaKR--
Really appreciate your perspective and words of counsel.
I think that's a good idea--to print out my initial post and let him read it.
And I didn't know what the receptor thingy meant but now do.
I'm so glad to have connected with this site--after scrolling through a Googled twenty!
Thanks again! Bless you, too! Trill
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It's the best site, I also belong to some FaceBook groups that have been very helpful and supportive.
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Trill, one thing to consider is that surgery, if they can get clean margins, and no node involvement, is about 70-75% curative. please think long and hard about doing at least the surgery.
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A couple thoughts:
* get a notebook & start writing down your questions, write their answers down as they give them (I used two different color pens so I, for sure, wouldn't miss any of my questions).
* if you have a friend who could come with & help you listen, that might be helpful too
* get a contact number or email of someone in the doctor's office who you can get a hold of with questions or concerns between appointments
* get a copy of all your tests, reports etc.
* some things you will want to know for sure as you are making your decisions are: what stage are you? what grade is your tumor? are you node positive or negative? What is your HER2 status? All these will factor into your oncologists treatment recommendations along with your hormone status.
* Chemo surely is not fun but with the really precise dosage and very good anti-nausea drugs, most people do not get sick like they did in the past. I just felt 'off', but never nauseated or incapacitated.
* Try to keep an open mind when you talk to your doctor. Find out all the facts, find out your odds with and without various treatment options, get a second opinion if you need to. And this next is just a personal observation, but if you are in good health otherwise, 72 is NOT old! You could potentially have many good and interesting years (decades even) of life post-treatment.....just a thought.
Sending my best wishes to you during this hard, hard time!
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and one other thing, I did chemo and never had any nausea, zip! And I never took anything other than what they gave me for infusions and the steroids two days before and two days after. And not all chemo is the same, some are easier to do
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LindaKR--I wish I knew how to operate facebook--but it always is so busy with things. I still revert to email--and sites like this that run smoothly and aren't too cluttered. Maybe if I can summon the courage to tackle IDC I can tackle FB... Trill
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Dear Italychick--Will do. I've been reading a bit and think surgery sounds a good move at this point...it's really the other stuff that bothers me...you know? Trill
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Dear Ruthbru--Such wonderful tips and guidelines. I need to write all this down!
Tomorrow I go to the radiology people who did the mammograms before the biopsy, during, and after it--for the CD disc of all of them that the onco doc has asked for.
I think my regular doc got the path report and was reading some of it to me today, although when I earlier called back Advance radiology for the biopsy results she only said cancer--no more, even though I asked for details. So I guess they wanted my regular doctor to go into it with me.
How do I get that path report to the onco doc? Advance Rad is at one hospital, regular doc and onco doc at one two blocks away that I wanted to go to for mammo but they couldn't get me in till the 17th. Didn't want to wait that long. Well, if it was faxed to my regular doctor, who's at the same hospital as the oncologist, then it could be made available also to him.
I go to Advance tomorrow if I can summon the presence of mind. Or Friday. Will ask about path results when I get mammo CD.
Oh, God. This day.
How will I sleep?
My doctor gave me Traxadone, which hits me like a Mack truck and leaves me wrapped up, groggy, in a mass of sheets the next day, out of this world..
I know 72 isn't old. My kitty needs me.
Thanks for being there.
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Yes I do. All the treatment scared the crap out of me. I had negative er and pr, and they told me I had no choice but to do chemo. Looking back, with great surgical margins and no node involvement, I will always wonder how much chemo helped. I have grandkids though, and I wanted every fighting chance to be here to see them grow.
I think the least treatment should be surgical removal. They could get it all out with a lumpectomy, and then you can decide on everything else after surgery. It takes at least four weeks to heal from surgery before any further treatment would be contemplated. 72 is young by today's standards. I am 53, and if mine comes back, I think I would probably just have the breast removed and not do reconstruction. My great aunt Josie had a tumor similar to mine removed at my age, and she lived to be 99. There are still a lot of years ahead of you to live.
Not trying to put any pressure on you. I found the lumpectomy surgery to be no big deal at all
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Thanks Italychick--I think I'm gonna print out all of these posts and keep them with me!!
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Trill, the absolute worst time to make treatment decisions--one way or the other--is in the few days after diagnosis. It’s a punch to the gut, a screeching halt to what we all thought would be forward progress in life, and all you know is that you’ll be making a hard turn instead--but will it be left or right? The one turn it can’t be, as much as we would wish it, is a U-ey. There’s no hopping backwards over that break in time.
I concur with others here that if you are unsure about which way (and whether) to proceed about treatment, it would be wiser to consult a medical oncologist first rather than a breast surgeon. At 64, knowing the estimated size, grade and profile of the tumor, I was definitely sure I’d have surgery, but not sure whether mastectomy or breast-conservation. I had no idea what lay ahead after that, but because I’m only a tad younger than you and have some comorbidities, I was very fearful of chemo. So my first stop was the breast surgeon, and she referred me to the medical oncologist for a post-op appointment once the surgical path report was in and they knew more about the tumor. She also was able to assure me that for a tumor of my stage, lumpectomy + radiation had the same survival rate as mastectomy--and that prophylactic mastectomy isn’t always indicated if the tumor is small, in an “opportune” location, the breast is larger, diagnosis is later in life, and there’s neither genetic mutation nor family history. (I know I’m in the minority around here in feeling that absent any exigencies and high-recurrence-risk factors that a bmx for me would be overkill. I also hate surgery, and a lumpectomy is shorter with a faster recovery).
Where are you being treated (“treated” meaning including diagnosis, consultation and planning)? I would urge you, if it’s at a smaller community hospital--especially in a small town--to seek a second opinion at a major university-affiliated hospital with a comprehensive breast health program and cancer center. In a small hospital your surgeon is likelier to be a general surgeon, not a breast cancer specialist (and he or she may also be the one performing biopsies, rather than a radiologist with special expertise in breast disorders). Your surgeon, no matter who, won’t get any “do-overs:” you want the appropriate procedure for you done correctly the first time, with the most up-to-date knowledge and techniques. It’s worth the drive (or flight) to get that. Adjuvant (post-op) treatments can be done closer to home.
But only you have the final say as to what’s right for you. Your medical oncologist can tell you the pros and cons of chemo; if your tumor’s not only hormone-receptor-negative but also HER2+, there are targeted biologics such as Herceptin available to you. And once you do decide on the type of surgery (assuming you decide in favor of surgery), you still don’t have to decide on which if any further treatments you want until the pathology report is in on the tumor, nodes, and margins. It’s not unheard of for an initial biopsy to over-or-under-estimate the size of the tumor, as well as its grade, receptor and genetic profile. Mine turned out to be larger than estimated--though still “small”--but slower-growing.
When, after my lumpectomy, I met with my oncologist for the first time and told her why I was leery of chemo, she laughed and told me not to get ahead of myself--rather, she first wanted to know all about me: where and with whom I live, what I do, what I love to do, what matters most to me. All of that has bearing on what to do going forward. She told me that there were all sorts of things they do nowadays to improve immune response and prevent nausea and neuropathy--but that I would likely not need chemo due to my age and the surgical path report. (She also ordered the OncotypeDX test to further determine that--but it’s ordered only for small estrogen+ tumors without lymph node involvement and with clear margins). A really good medical oncologist, since she or he will be leading your treatment team, needs to know as much about you as possible in order to treat you as a whole person rather than a tumor.
It’s up to you to assess what is most important to you, especially how you feel about what if anything you still want to achieve in life and who (human or animal) depends on and loves you. Life as you know it will change--but maybe not as much as you fear it will. Do let us know what you learn from your care team and how you will proceed--whichever way you turn.
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Wow--good stuff to know. So being negative estrogen and p receptors means chemo....hmmmm...
Well, right now 72 feels like 92. Hey, I've survived 20 years post diagnosis in a few hours! Hah!
Gracias. Trill
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ChiSandy's post is great, lots of good information in there! I second, get all the data. And breathe! And move forward one step at a time, otherwise it seems so overwhelming
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Trill, sorry that you have to join our group but as you can see there are many helpful lovingwomen on here. I too think you should at least consider having the surgery making sure that you go over all your past bad experiences with anesthesiologist so they can help with that.
Mkinoly, chemo may or may not be part of my treatment but I was wondering what type of alternative treatments you are using?
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I can't say for 100% that negative receptors mean chemo, but it did for me. You could come back as grade 1, which is slow growing and not as affected by chemo. It's really hard at this point for you to know since you don't have all the data available yet.
Just try not to let your focus be on chemo. there are lots of horror stories out there, but honestly, people with issues tend to be more vocal. Chemo never stopped me from living my life, working, exercising, watching grandkids, anything. Was I impacted? Yes, definitely. But nothing like I expected at all. Four months of kind of crummy, and now it ended almost six months ago and I don't even remember what it felt like anymore.
Get all the data, and don't let people push you until you are comfortable. My doctors said that by the time mine was discovered it had probably been there for 5-7 years, and the time from diagnosis to surgery for me was almost eight weeks. Get an opinion, get a second one, and then go with what you feel best. I got four opinions before I was ready to make a decision.
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True story, Trill:
A week after my diagnosis I was still in a fear-fog. Finally got a surgery date, had my pre-op labs and flu/pneumonia shots. Was feeling tired (especially my arms, from the vaccines). But I had committed to attending a meet-and-greet down in the Loop hosted by my songwriters’ organization for the vice-president of the largest online retailer of independent recordings. I took an Uber, nursed a Virgin Mary or two (had just learned I’d have to cut waaay back on alcohol). I sat there, sipping, asking questions, trying to make small talk--but my brain kept playing the endless tape loop: “cancer---I have cancer---I’m going under the knife.....” Afterwards, it was a nice night so rather than calling for an Uber or hailing a cab back home, I walked a few blocks to the subway instead. Rode, disembarked, emerged from the station a few blocks from home, and began to cross the first street.
But as soon as I made it across the street, I froze in my tracks. There, on the sidewalk, block-printed in chalk, was this message:
JUST BREATHE. IT’S GOING TO BE OK. HOPE IS ALL AROUND.
Who could have known what I was facing, or that I would pass that way at that moment?
Every time I have a crisis or complication since then. I repeat that as a mantra. It works. (Even made it the chorus of a song I’m working on).
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