That’s me - I kept walking around telling everyone who slowed down by me that I was in the anthology, page 35! Was I beyond proud? Hell yes! What am I talking about?
Well, if you are a patient of Sloan, they have a non profit organization called Visible Ink that is run by Judith Kelman and volunteers who edit and help encourage patients write about ... well whatever they want.
As soon as I learned of the program, I signed up and Judith herself called me to find out all about me and then she linked me with my soulmate -Samantha - the best editor around (imho) and she and I got to work on what I wanted to write. I knew right away it had to be fiction.
Why? Because I always wanted to write fiction but could never do it despite trying for uhm decades. I am a big reader and wanted to publish since I was a kid and even my professional publishing did not satisfy my goal of published writer. Sure I was an author but not a “writer” - there’s a difference and if I have to explain it to you, you will never understand - but if you get it, you know what I mean.
I started writing about a divorced single mom of 1 with one boob - the only things like me are the one boob thing as I am married with 2 kids :).
When I submitted it, I wasn’t sure what would happened, it was 800 words ripped from my soul and a few months later I got the letter saying I had been selected to be part of the anthology!
There is also a chance, if your piece is selected, to be acted out, on stage, by Broadway and off Broadway (and TV) stars but mine - this year- was not picked for that but getting into the anthology at all was a huge honor!
I attended the event with my husband right after our long vacation at Woodloch - I got dressed up and I was nervous and excited. My seats were in the second row and we were absolutely transfixed for the whole show and before when my picture was on the big screen too!
Each piece was acted out much like I did during my days of speech and debate with a black binder and limited movements but with music and dance and singing and more. Oh the singing!! My other most wished talent!
On the way out of the event on to the smorgosbord of wonderful food and drink (all provided for free), I saw someone who looked familiar, though I could not place her. And then, my brain kicked in and I realized it was my favorite (living) author! (Note: My favorite author of all time is Emily Bronte but she is not living anymore - is it creepy that I feel I have to preface my favorite author with the word "living"?)
Adriana Trigiani was there - in the flesh and we hugged and she was so so kind even though my chemobrain robbed me of the names of all of her books. I just read her latest Kiss Carlo and all of her books have been amazing - like Big Stone Gap! If you love books that hit you with love stories, scenery, dialogue and more - like when I read her books, I can see her world in my mind, that is the mark of a true writer, then you must read her work - the link to Amazon is right here .
Visible Ink is a nonprofit that helps heal - by writing our stories, we give pieces of it away - the bad stuff that would eat at our hearts gets out and into the ether. The good pieces become tattooed on our hearts for whatever comes next. The kindness of people who volunteer to do this either editing for hours or practicing a piece to get it just "right" for the writer (and the rest of the audience) - these are amazing things that people do to help us feel whole again.
If you can donate anything to help them continue, it would be amazing and tax deductible - you can click here to donate OR to order the anthology and to read my amazing kind of too personal story (though it is fictionalized, parts of it are real true - too true for my husband's liking... but it is okay, he still loves me)!
This is a tough week for me. I have not been sleeping well and everyone in my family is a "snotmonster" and all congested and coughing (including me).
Of course, this was making me think I should be concerned for me and my health given the whole cancer thing but then I realized that if everyone in my house is doing it, it should be ok, "should be" the operative term.
When I was feeling sorry for myself this morning, something crossed my Facebook feed that made me stop and smack myself. It is the story of a 5 year old girl diagnosed with DiPG the worst kind of brain cancer and given 9-12 months to live. That shook me right up and I am including the link to the YouCaring site so if you can, you will donate something to this family. I do not know them AND I am unemployed but I donated $10. I would have done more, if I could. I know I cannot donate or help every family who is hit with cancer for a child but I will say again that cancer sucks but it is so much worse for a child - give what you can here and if you cannot give, please share the link-> www.youcaring.com/parentsofaveryandyandemilyneill-1047204?fb_action_ids=10214612959054343&fb_action_types=youcaringcom%3Adonate.
Tomorrow I go to Sloan for my yearly mammogram and sonogram on my remaining breast (good old lefty). It is something that has been bothering me subconsciously and I think that is why I have been unable to sleep too well this week like at all. I have been tired and groggy and snotty (not the teenage variety but literal snot) since Monday (and even for some of the weekend, too).
My remaining boob has been prodded and checked at each and every follow up over the last year (with my clinical trial I was seeing my oncologist monthly for a bit and each visit I got manhandled lol going-to-sloan-monthlyor-not-more-about-the-pallas-clinical-trial.html) AND I check it every month on the "feel it on the first" campaign and it all feels ok. Tomorrow, though, is my first mammogram and ultrasound since the big Diagnosis and after that whole cancer plot twist last year, I guess it is normal to be freaked out.
And I think I am kind of freaking out. I mean, I didn't freak out a month ago or even a week ago but I am kind of freaked out now.
I am working hard on putting it all in perspective and seeing that family's story about the young girl being diagnosed definitely is making me put it in perspective and just take a deep breathe, meditate, pray and just deal with whatever it is. I know that my worries today, my freak out right now, is not going to help or even preclude any bad news from potentially happening nor will it make me feel better if/when I get good news, either - it is just a waste of energy to worry right now. I know I need to stay focused and smile but damn today, the day before I go in to sit in that waiting room in that robe waiting to be called and squeezed and prodded, I am freaking out.
I hope that I get it out of my system today but between everyone's cold, coughing and congestion (it is like leaky faucets over here, no joke) I just know I need to rest and not think about it. I should instead by thinking, well, it could always be worse so let me just enjoy today, right now, no matter what happens tomorrow, I have this time between and yes, we are all feeling yucky and I am exhausted and not at all ready for tomorrow but I will get it over and done and survive it because that is all I know how to do. It is how I got through chemotherapy just that focus to just get it done knowing it was something I had to do in order to get to "cured" or "healthy".
Did you freak out at your first follow up mammogram and sonogram after breast cancer? How did you deal with it? I know now for next year that I need to take better care of me before these testing dates come up because I do think if I did not feel so yucky and had been able to sleep better, I would not be as freaked out as I am ... (it is like a game of what came first, the chicken or the egg though because I probably did not sleep well because of the worry for the upcoming test...)
What do you think?
So this post is hard for me to write. It is hard sometimes for me to be so damn honest about the reals ins and outs of being a mom, a wife, a cancer something -- because I still just do not know what I am in terms of cancer. Am I a former cancer patient? Am I a cancer patient, present tense? I just do not know.
I do know that last year I was diagnosed and everything changed. I focused on keeping one foot in front of the other, working when I had my job and being as present as I could be for the kids and my family despite the fact that there were times I was scared and I had no voice and I could not understand how/why this happened to me...
As I have said before, I got over the whole pity party as quick as I could. I had help, I had someone who had been through it before who without, I would not have made it. Lori is the name of my sherpa and she is still a part of my life, though we still have yet to meet in person.
When I started at Sloan, I was given the option to join a "patient helpline" program (cannot remember what it was called) and anyway, that day I said, "yes" I was called by Lori. Her first words to me were, "Welcome to the club you never wanted to join!" I remember sitting on the phone with her even though I had to drive from my first consult on Staten Island to go home.
I had yet to even set foot into Sloan but here was this lifeline, someone who had been through it before as I knew no one who had had breast cancer.
She promised me she would be there for me every step of the way and she was and continues to be even now; I was her first patient that she helped through the entire process and she continues to help me and others. She is my sherpa, my angel. She has been there for me at 2am or at 5pm. She is the one who inspired and actually taught me the tips for treatment blog post tricks-for-treatment.html and vlog.
As I continue to navigate this world of "in between" I think about how stressed I can let myself get. My husband has been sick for weeks, my dad is here with me recovering from his near death experience, I have two kids and a dog and myself to care for while job hunting and recovering from the year that "changed it all". I want to say to you reading that you can have gratitude and still be stretched so thin that you just want to yell.
This is how I feel today. I am so damn lucky that I can do the things I need to do and that, theoretically, I am NED (no evidence of disease). I plan to / hope to stay that way. I had a bad experience with a local gastro doctor who did an endoscopy and diagnosed me with like 4 things that would be massive if I had them (and oh I would have some massive symptoms) and in calling the office in fear, I was told by them and the doctor that everyone gets diagnosed with these things. Also, some biopsies were taken but I am assured from a friend who is an endo nurse that these are quite common.
Having been through the cancer workout, I know I need to keep it out of my body, out of all of my other organs at all cost because if I do not, I wind up incurable and just about given a death sentence. The only type of breast cancer people die from is the kind that spreads. So with every test, with every doctors appointment, I open myself up to fear. So instead, I have to focus and think about the good. Think about the lack of control and let it go where it must. Because I cannot control it, truly.
1/3 of all breast cancer patients wind up metatastic regardless of staging. So someone with stage 1 can be "cured" and then wind up with Stage 4. We need funding and I need to think about how I can help with that.
For now, though, I have to remember when I get stressed, when I get overwhelmed, that I have to think about how badly I wanted this "normalcy" back and how much things can change in an instant. God willing, we all stay / get healthy, I find a job to keep busier and life continues to move. I do not want to forget my lessons - I am not in control but I know how to put my fears someplace else. To let them sit someplace else. It is quite "nice" to be able to get overwhelmed and not have it be about death, if you know what I mean?
This video is a long time coming - from when I first stepped foot in the Evelyn Lauder Breast Center, I knew I was where I belonged. My surgeon treated me like a daughter; my oncologist treats me like a sister; I tried to make one of my chemo nurses my sister in law.
Where you are treated can make a huge difference in just everything about your health and your future. I tell my doctors all the time that I do not worry because I expect them to worry for me. And they do. At Sloan, I was treated like LISA - I was me, everyone loved me and they did not need to love me.
I also was treated quickly - from my first appointment to my surgery it was 11 days. And only that long because my damn right breast was dense and hiding the cancer and I asked for a pet scan.
May you never walk in my shoes but if you do become the 1 in 8 diagnosed with Breast Cancer in your lifetime, pick your SLOAN.
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