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)!
Today, I did something I have not done for a long time. It is my birthday, so it’s been 365 days since my last one so I guess I do not do that too often… But I went out and had lunch, by myself.
This is something I used to do all of the time, back in the day. I have lived alone in foreign countries, taken 27 hour flights to far flung destinations for work but something I stopped doing abruptly over the last ah 13-15 years is doing things by myself for ME and with ME. It seems weird because I was always a very solitary person who just went off to do my own thing quite often.
Somewhere in becoming “coupled” up for good and having children, I lost this ability to be alone. I was always alone but alone at home and busy or alone at work and busy but now, I am just enjoying my own company and having a good old time spending money I do not have to get some splurge items for this birthday, this birthday that I never doubted I would see - maybe because I am just stupid but I just did not doubt that I would see this birthday in the books and that I will see many, many more - at least past 70, right?
But, the truth is I do not know and as much as I am rah rah and cheerful and positive there are these little nags that sit on my soul - this tiny little doubts that flourish up at the most inopportune times and remind me - remind me that my days might be numbered to an extreme, that there are cells that might remain in me trying to wreck havok and/or cause issues all I can say to that is I AM DOING EVERYTHING I CAN POSSIBLY DO TO NOT HAVE THAT HAPPEN and also, HEY I DO NOT HAVE CONTROL OVER THAT BECAUSE IF I DID, I WOULD NEVER HAVE GOTTEN CANCER IN THE FIRST DAMN PLACE!
Excuse my yelling. Sometimes, there are things that try to take your joy. In the “old” days, I had many, many things that took my joy. Now there is only 1 - it is just the underlying fear of having been sick and the WHAT IF it happens again. So every day, especially on this day, my 41st birthday, I do what I can to exhume it, to get it out and to live my life because it is what it is and it could always be worse.
I got stuff to do, though, and it should be enough to keep me busy and focused. Finding a job, filing for my charitable company The Time Between Is, Inc (done today, for my birthday gift to me - I also got myself tons of earrings, an echo dot, a new bag, new dress and a belt oh and a pair of jeans - today was a treat yoself day!) and just living life. Tomorrow is birthday breakfast with my best friend forever and of course tonight is all about family. We will meet at a restaurant and have a big dinner and a bigger cake. It is time to go big or go home for me - it has been a long time since I had cake / sugar and stuff so Bring, It. On.
How do you celebrate your birthday after breast cancer? What do you do to make sure nothing steals your joy? How do you quiet your fears?
I am focusing each day on practicing gratitude. I am keeping a journal to jot down a few things each day that have made me happy that day. I am doing this at night to go to sleep with happy thoughts.
Each day in my gratitude journal I write that I am healthy and cancer free. Do I know this is true? No, not really. Do I believe this is true, yes and I will unless God forbid I am told otherwise.
I try to think this way every day but some days, it is hard. Some days, I get a headache that lasts too long and I think, "Oh shit." Some days I get back aches and/or other weird pains and think, "Oh shit."
Sometimes, someone stops to ask me about my experiences, someone who is an acquaintance and means well and I tell my story and for a bit afterwards, I think about how I am a G#D-D@mned super hero that I am cured and still standing and kicking ass and all that - then about an hour later, I am thinking, "Damn, that person does not have cancer, never had cancer, and wow I am sick and so unlucky and blah, blah, blah...."
I do my best to just shake it off, though, and continue thinking positively, not because it will cure me but it sure as hell can't kill me.
On another note, I am at goal weight and have stayed there since mid-November the-weight-of-a-breast.html . I weigh what I did in high school people (137 pounds). Way back when I weighed this amount last, I thought I was HUGE and OVERWEIGHT because I was a typical insane teenager (and I quiver with fear thinking about how soon my kids will be teenagers and think these crazy things but I also look forward to it and plan to be here for it and if I complain then, hit me and remind me how I had / have cancer and shouldn't complain lol).
This is my routine/eating style post integrative medicine doctor meeting at Sloan (integrative-medicine-clinical-trials.html) that led me on the 10 day green smoothie challenge that I believe kick started my metabolism and also taught me how much food I need to eat vs how much I "wanted" to eat.
For instance, pre challenge, for breakfast I used to have a full smoothie with kale, spinach, fruits and water AND a yogurt with granola with dark chocolate and now I just have the smoothie. I am full and not at all hungry and cannot believe how much extra I was eating before versus now.
I eat breakfast 13 hours after I had my dinner; this is some kind of intermittent fasting process that is supposedly good for your body.**
After breakfast, I have my green tea - 2 cups of it, usually in a to go container so I can drink it on the road. A few hours later, I have snacks with me ready to go. I have ziploc bags with apples, unsalted nuts, almonds and rice cakes. Yes, rice cakes. Some people think they taste like cardboard but I love them. I use the whole grain sea salt ones. They are delicious.
For lunch, I have salad or a smoothie or a 1/2 of sandwich (meaning, I go to the deli and get a wrap and it is the size of my ARM so I cut it in half and save it for the next day's lunch). Between lunch and dinner, I have more nuts and fruit again. Dinner is whatever my family eats but we are all trying to eat "clean". I also have like 3 days a week oven roasted veggies to snack on throughout the day, too.
During the day, I am also moving and grooving usually doing at least 10k steps a day with 4k of them as a cardio workout.
As part of my de-stress routine, I listen in the morning to my hypnosis app by Seth Deborah called "Victory over cancer" and I meditate as well. I also pray and think about all of the things I am grateful for, as I mentioned in the beginning of this post.
This is how I try to stay sane and focused and grounded. I cannot worry or wonder every day about what is going on inside my body so instead I smile and zen myself into oblivion while job searching, taking care of the house, kids and puppy oh and husband oh and my dad, too. Can't wait to find that job! Oh and of course, updating this blog and sharing my story, in the time between....
**I am not a doctor so please check all of this information out with your medical team before following along with me.**
I shared this on Insta already (@thetimebetweenis) but wanted to give it it's own post here on my blog.
When you are THE MOM the uber mom who does everything for your family, your kids and maybe sometimes yourself (barely), it is so hard for your kids to see you have to stop, have to slow down. For a kid to learn their parent is "sick" and has "cancer" is really scary - I talk a little about being a parent and a kid in situations where the mom got knocked down here --> a-tale-of-two-novembers.html but there is more to it than even that.
I am a writer and it is how I process things since 1986 (my first diary). My children are also kind of expressive in either art, music and/or writing (they are a mix). I sat with my oldest and created this children's book using an app on my iPhone called LittleStoryCreator and put this together using some personal pictures and our story.
If I do decide to do something with this book, in the hopes of helping other children who are going through watching their mom or caregiver deal with cancer, it will be set up to donate the proceeds to a charity that can physically also help these children.
During chemo, I wished for a camp where my kids could live and be cared for and kind of distracted so they would not see me on the couch looking dull and lifeless so they would not realize all of the things I had to miss and not go to because I just could not swing it and for fear of getting sicker. I also did not want them to see me go bald and to see me look so tired. In a way, now I am glad they saw it because I want them to remember that sometimes we fall down and we get hit with things we did not plan for, expect or want but we have to survive, we have to pick ourselves up, put our wigs on and get out there and do what we have to do to make it, to get to the other side.
I hope and pray every day that 1) they never have to go through anything like this and 2) that I am fully on the other side and done with it. No matter what, though, we know we survived and we did it as a family. This book, this story, tells that from the perspective of a 6 and 9 year old who's first and only question upon hearing I had cancer was, "Are you going to die?"
Let me know your thoughts about the little snippet up above and if you want to see or hear more, let me know. This is what I do in the time between.
I have always dreamed of being a writer. Not just a "writer" but an "author". I was able to get myself to "author" status but it was impossible for me to write fiction. Always had been.
Check out my published books here -->
www.amazon.com/Lisa-Vento-Nielsen/e/B01BYRZ8W2/ref=sr_ntt_srch_lnk_1?qid=1508515269&sr=8-1. Everything was done quickly for those books and focused on my "expertise" of college, career readiness and entrepreneurship (as I have shared before, one of my previous plot twists was as an entrepreneur - check me out at www.thenextstep1234.com.
Now, though, I am working on fiction and for the first time in my life, I am able to write about characters and trying to get dialogue right but I have a coach this time so I am confident I will be able to do this. I am working with the Visible Ink program through Memorial Sloan Kettering and my coach's name is Samantha (though I call her "Sam"). She has been instrumental in getting me writing again. I did NANOWRIMO one time years ago and I just wrote and wrote and wrote 50k words (I won - I got a t-shirt) but none of it was usable. It was all just writing to write.
Now, I have a chapter outline for 20 chapters, my preface is done and my first chapter, too. I know where the story will go roughly speaking but I am finding the voices of the characters and just so running with it. I want to write a book about a one-boobed woman finding love to fill the gap I noticed in my guilty pleasure of reading all kinds of crazy books stress-reducing-pastimes.html.
For me, reading books is like watching a movie. I do not watch much television at all because I prefer to envision things my way. So if a book is great and then a movie comes out based on the book, I am always disappointed. I am one of the only people I know who read during labor for my daughter (my son was a c-section so I could not read in the OR) and read before my mastectomy and during chemo. I love to read more than anything. In fact, one of my goals if I get back to work sooner rather than later is to create a reading nook for me a space in my attic where I can sit and lounge and read. That will be for when I do not have to "adult".
HA! When is that?
So this is what I do in the time between and you can bet your last dollar that I will be posting some information on what I am writing soon. I am including a snippet here -- let me know what you think?
Anyone who knows me knows that I live to write. I have kept a diary since I am 9 years old and I still have them upstairs in my draw - book after book after book filled with nonsense, writings that probably should have been burned before my then 9 year old daughter found them. As she sat at the eve of her 10th birthday, we spent a few hours looking at my diary from that exact same age - her thoughts -that I was really weird and strange as a child. Cannot say that I blame her for those thoughts.
As I got older, I moved away from writing all the time to only recording when I was mad, upset, sad or some other negative emotion. Then, I got to a point where I did want to be "positive" so I started a private LiveJournal to document living with two children - it took me time and grief to have that second child so once I got over it, I wanted to document all of the things that made me smile instead of focusing on the things that made me cry.
When I was 38, I decided to get out there and launch a small business called The Next Step focusing on helping people figure out how to be college and career ready. I started a blog www.thenextstep1234.com/blog and was so inspired that I wrote and self-published 4 books. (I have mentioned before but I love to write and once I wrote the first one, the other 3 just wrote themselves.) I have my own Amazon author page, which has been a dream of mine since i ordered my first book on Amazon in 1999 - check it out here--> www.amazon.com/Lisa-Vento-Nielsen/e/B01BYRZ8W2/ref=sr_ntt_srch_lnk_1?qid=1503847844&sr=8-1.
I have not sold a lot of books at all - the truth is that I have been the number 1 buyer of my books and have given more away for free than I care to count. My idea behind the books was never to make money but to promote my business and my skills to clients and for that, it did work well.
Now, though, I am working on a very different kind of book. The kind of book that makes you (me) cringe more than I want to and that I am kind of afraid to write -the book about ME and my life and my experiences as just "me" pre-cancer and post-cancer. I was always a type A person - driven, driven, driven always able to juggle multiple things and focused on the big picture, which actually caused me more anxiety I think than being myopic and only focused on part of the picture.
When I was running my business, I was so invested that when I saw someone else getting press or some similar business getting work when I was not, it would bother me so much but I just focused on making myself think I was just "driven". Then, I was hired to be a full time teacher and walked away from running my business full time against my husband's wishes - he thought I should stick with my business. Three months later, I was diagnosed with breast cancer.
I wish I could say that I was superwoman and able to survive and thrive during cancer treatment but the truth is, I could not even recognize myself in the mirror or in my soul. I was not me (so I thought) I was broken and I struggled so damn much. But I was ME - just a "me" I never knew before - someone who could not care for her children, who could not "wow" my employers or myself - someone who really had some big lessons to learn about how to live.
During that time, I carved out time to do what I love to do - write and linked below is the prologue to my story - the story of going from Type A to Type C.
It is the most raw writing I have done to date - I would love to know what you think of it and if it is something I should keep working on - my idea is to self publish this book and have it included alongside my "professional" books when I tried to be "superwoman" not to diminish me or my story but to show me forever and ever that who I truly am inside is someone who is human and who just wants to survive.
The Time Between Is, INC is a 501(c)(3) corporation - help us reach our goals of launching #balanceaftercancer
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