November is caregivers month and wow I have a caregiver — I am laughing hysterical at this because I am the caregiver the guru for everyone in my life - I am
The Mother for so many people, the designated driver since birth, the surrogate for my brothers, the mom of my mom... well you get the idea.
My whole life is about taking care of others - especially of my husband. He had some issues (to put it lightly) and I spent a lot of time doing the heavy lifting for uhm everything and tolerating his inactivity and his inability to meet me half way on life.
I never considered being married forever - I expected that eventually when the kids were older that I would dtmf because he was not with me with me ...
Then I got cancer and damn if this man did not become the partner I always thought he could be - damn if he didn’t come to every appointment and every treatment and do more than I ever thought he could do to keep things “normal” at home during my surgery recovery, chemo and radiation and on and on as I go for follow ups and shots and more he’s at every one - and looking to the new next thing my ovary and fallopian tube removal in a few days he’s ready to ramp back up again.
After my first chemo, he was sitting with me on the bed and I began to cry and say, “I am so upset!” And he was like, “ok, what’s wrong? Are you nauseous?” And I was like, “No, I’m so upset that I can’t divorce you now and it’s not because I have one boob it’s because you stepped
up and you’re helping me so much and now I have to totally revision my future plan of being a single old lady living with cats and dogs!” He cracked up and said, “That is the most romantic thing you have ever said to me.”
Lately I have naturally fallen back into the do it all mode and he has naturally gone back to the laid back not involved mode but we are working on keeping him as a partner for more - and despite how much cancer sucks I am so damn lucky to have met and married this crazy man who loves me and supports me no matter what.
Another grateful day - it was a tie to have this be about my husband or my kids but without him, I would not have them...
Photos from Sophie Mayanne and Behind the Scars - shared via Elle Magazine:
I blogged every day of October last year and this year although I felt I did not do much I did get featured in Elle (thanks Sophie Mayanne and Behind the Scars) and did cut the ribbon at the Making Strides Walk for my city and you know just kept trucking through what was a time of disquiet in my soul and heart...
Now here we are in November - pinktober is over but hopefully some of the lessons remain like how metastatic breast cancer kills 114 people per day but only gets 7% of the money raised for all things “pink” oh and also that breast cancer is not pink or sexy or fun - it, like all cancers and diseases, is a thief, a curse and a constant thorn in the side of all who have ever been told, “you have cancer.”
But on to gratitude- this is the month of my cancerversary - I was diagnosed in November 2016... it feels like it was 2006 though to me - it feels like sooo much has happened in these (almost) 2 years.
I will NEVER thank cancer for anything but I will begin my journey of gratitude today this November 1st on a very important thing — HEALTH.
I am grateful for my health. Now, what did I just say? Health? Me? Someone who probably could not get life insurance if I tried? I’m happy for health?
Well, let me tell you right now my big secret of how I keep smiling every day - I CLAIM my health in my faith, in my heart, in my life, in every aspect of my life I am healthy, I am cured and I believe that until the day that God forbid I am told otherwise.
Despite stage 3 breast cancer and all of its treatments and side effects including a radical right mastectomy, lymph node extraction, 8 rounds of chemo (during which I worked full time and was a mom - kind of - I lost the job but kept the kids so yeah!) and 33 rounds of radiation. From going bald and feeling so ashamed and not wanting anyone to know I was sick to having a blog (or 3) with more than 2000-3000 readers per week and serialization in Cancer Health Magazine website and other sites and news outlets oh and being in Elle with my naked chest out for the world to see - me who wouldn’t wear a bathing suit once I became a mom is now just like hello would you like to see the space where my right tit used to be - sure!!
And of course I also have continued therapies for hormone positive cancer - I went into medically induced menopause in February 2017 at 40 years old - my mom kept her cycle until like 58 so that is 18 years earlier than I should have stopped my cycles and damn does my body know it - so daily anastrazole pills, every 3 month lupron shot and now in a few days a prophylactic removal of ovaries, fallopian tubes (hopefully laproscopic) and a d&c to test the lining of my uterus and other parts, just to be safe.
My 8 year old asked me this morning, “Are you doing this procedure so the cancer does not come back.” I have some freaky smart children but I also balance the fact that they need to have some black and white in their life and not just shades of grey so I believe in my heart and soul that I am healthy. I do a lot - for the kids the house my husband me and my family and the 2 businesses I am running with some clients and everything and just trying to also spend time on me my friends and my creative pursuits.
I claim it, I believe it and I am grateful for it - so damn grateful because it could always be worse. So as I sit here smiling and laughing one thing I’m not doing is complaining - I don’t ask “why me?” I ask “why not me” - cancer does not discriminate and it does not care about risk factors and for the 1/3 of us breast cancer patients that become metastatic and for the many diagnosed stage 4 de novo I hope everyone tries to do more in any way they can... me, I’m sharing my story and hoping for awareness campaigns to become cure campaigns instead.
Who’s with me? What do we do next?
It is Halloween and also the end of Breast Cancer Awareness Month (AKA Pinktober).
It was an off month for me - after a month or two of being "off", I am feeling slightly stronger and ready for whatever tomorrow holds again. I have pulled back a bit from being so focused and instead have begun listening to my body and my heart and doing what I want to do to keep me happy instead of what I am expected to do or what I am "making" myself do. I am still focused on my nonprofit and my small business but I am not consumed with it. I am making myself learn the art of balance and also of putting myself first. A big way to do this is to decide to chuck my ovaries. Trick or Treat is definitely a bit of a trick for me!
I have hormone positive breast cancer. As far as I know, I am NED. It will be my two year cancerversary in November <it feels like 8 or more years ago but it was only almost 2>. I asked Sloan during one of my clinical trial appointments if I should consider getting my ovaries out. (Note: Instead of only seeing my medical team once every 6 months, I am here every 3 months with my oncology office and every 6 months with surgeon so I have not yet felt that off the cliff feeling of no more medical appointments most survivors go through).
As a hormone positive breast cancer patient, I get Lupron shots to keep my ovaries off or asleep. These shots are 12 weeks apart (though there is also a monthly option) and the shot is administered at the hospital. Right before my next shot, I find my body going into PMS with cramps, pimples and just the feeling that my period is going to hit again any minute. And let's not talk about the after effects of the shot always in my right butt cheek to keep the pain on the same side so I can sleep on my left - I laugh and suck it up but damn that shot packs quite a punch and some weeks of don't touch my butt pain.
When I had first looked into removing my ovaries, my decision was to wait until the clinical trial (of Ibrance or the Pallas trial) was over (I am on cycle 16 of 24 cycles) but then I went to my yearly for my local gynecologist and got an ultrasound.
This was great but also amazingly scary - I stopped to think about how this was a great idea to know what is inside but also then I stopped and asked him, "Are you doing this because you think something is wrong or just as a precaution." He assured me it was something he does for all of the women in menopause to check their organs. I should have had a monthly cycle until I was about 58 (going by my mom) and instead my cycle was stopped at 40 years old. The body wants to go back to "normal" yet my normal could kill me. (Note: This does not mean that removing my ovaries takes away the cancer recurrence / spread risk that all cancer patients deal with - some folks have one type of cancer like hormone positive and then it comes back as a different type of cancer like maybe Her2 or triple negative etc.)
I am so blessed that I have my children and that preserving my fertility is not something I need to do. Did I want to someday maybe have a third child? In theory maybe but not in reality. I have my hands full as it stands and when my hormone therapy ends in let's say 10 years (as recent research shows more time on hormone meds is better than less), I will be (God willing) 49 and my kids will be 16 and 19 (God willing) - would I add to my family at that point? Not unless I lost my mind because come on, I would be a mom of high school and college aged kids - am I crazy?
During the ultrasound, 2 sebaceous cysts were found - one on each ovary - and I was assured they are fine, normal and nothing to worry about but my mind remembered my mammogram and ultrasound from April 2016 when slight calcification in my milk duct was found and my 3 specialists I met with all told me it was benign with a 98% chance of remaining benign and I realized that waiting to remove my ovaries might not be what I should do.
So yeah, I decided to chuck more body parts. I did not make the decision lightly but once I decided to move forward, it all fell into place. Today, instead of volunteering at my kids' school for Halloween, I am at Sloan for my pre-op testing and meeting with the surgeon. Tuesday, November 6 is the day - not just election day, also the day I will remove my ovaries.
Sometimes I wonder if I am making the right choice but then I recognize that my ovaries have been rendered obsolete already and keeping them is a risk I do not want to take. For many years, I have had bloating, stomach upset and other common symptoms of ovarian cancer (which is dubbed a silent killer because there is no common test for it or testing regiment and the symptoms can be considered regular PMS type symptoms) and I recognize I do not want to hazard any controllable risks in my life.
For me, getting the ovaries out is the best choice - but like all choices it has risks and though I am thrilled I made the decision to be as proactive as possible, I still ask for prayers and support as I go forward with this. I will learn more today about the recovery but from my Google search, it seems I will be unable to drive for a few weeks - which means, for a mom of two kids with crazy schedules, a VACATION - no?
Here's to medical options and decision makings - may your Halloween be sweet & fun! XOXO Li
40 mph winds and 45 degree temperatures - I warned my team not to come as it was so cold but they all came and more! I am so lucky and blessed to have all these people in my life!
I was part of the committee for the event, my team raised enough money to be in the top 5 (and I didn’t even get the donation from the restaurant that hosted our big night yet - more on that soon) and I got to cut the ribbon to begin the walk!
I have been hard on myself this October - thinking I did not do enough, I did not write enough and all that but looking at this and some other things I will be sharing soon I do not think I did half bad.
Breast Cancer, and cancer in general, sucks and sometimes I do feel that loneliness but not during this walk I was warm and loved and I love in return :). This is life after cancer diagnosis.
I have to say I am so very lucky. And surprised oftentimes of how things work out for the best, without planning it to do so.
I was struggling earlier this month and late September, too. I dreaded October without realizing it - this month, this big month where everything everywhere is about breast cancer (but only ONE DAY about the kind that kills - metastatic breast cancer - smdh)… I had a lot of balls to juggle this month and the recognition that, again, I am not who I was in terms of being able to run, run, run all day long and not take care of me.
But it is so easy to slip into that, without thinking. That need to be all doing, all controlling - the spaces taken up by those who would / could help long gone as "You are ok now." Even though, now, I am not quite ok - do not think I ever will be able to do what I used to do without ceasing, without caring, without thinking of myself and yet, it is what I have been doing to get by each day of increasingly frenetic activity or running to games, to practice, to appointments - from one "crisis" per child to another <nothing hideous, but trying nonetheless>.
And the back of my mind thinking, "I need to write. I need to advocate. I need to use this platform to share my story, to help others, to do more..." but also knowing that I was kind of burnt out for a few weeks and attempting to regain my equilibrium is not as easy as it once was.
In my house, there is one person who does it all - like you other mama/sister/daughter reading this, it is me. I am in charge of keeping the house clean (despite its and the fellow residents' absolute refusal to help/keep it clean), the cooking, the shopping, the kids (just in general from reminding its shower time to helping with homework to planning weekends and doctors and such not) and also hubby who (God bless him) cannot plan for anything anytime - and when I sit him down to go over the week or the weekend's plans, or ask him to help or what have you, he asks for a list as though I have a list - it is just everything and do what you can.
And of course there is my budget - my woefully, depressing, anemic budget - and the bills that need to be paid and my happiness in having some clients but knowing it is not enough - yet - and that I do not see how I can take more on because now, right now, is when I have drawn the line in the sand.
I stopped taking care of me sometime around 3 months ago - maybe more. I became stretched WAY too thin and forgetting how I need to try to take care of me, to respect my body more, to give myself time to rest -but how? Every day is something else - every week is slammed with appointments, events, things to do and weekends are even worse.
I am still trying to work this out but I know it will involve getting more rest, planning less, and just letting some chips fall where they may. I cannot control it all - I can barely control my body to get myself to sleep well or to have these moments where I remember I am human and not superhuman - that I need to get these kids to have chores and to actually do them, that if my husband needs a list, I need to get him that list, that I need to remember that rest is never a bad thing and I can never get enough of it. And the bills, the budget - f@ck it. It means nothing compared to health and wellness. Sometimes, I forget - even I the posterchild to what is something really bad that can happen if you let stress and running like a lunatic be your life...
Nameste, Life - time to play it on my terms. Who's in? And who can help me figure it out?
It has been almost a month since my last post, writing, anything and I guess it is because I have not felt too "super" lately...
Well, that is not exactly true - I have still had some great times - but I did not want to document them for social media or share them - they were times with my kids and stuff and friends and family... but even with the good, I did have a week or two where I felt off, down, sad, etc then I realized it was time for my Lupron shot and recognized the beginnings of a harsh PMS on its way - can you imagine if your period was stopped in February 2017 and tried to come back like yesterday how you would feel? The emotions flooded me but I got the shot in the butt just in time yesterday to stop those damn ovaries from coming back to life.
Not before the zit started to grow on my cheek, though - damn you hormones!
I have been pretty apathetic about social media, though - maybe because it is "pinktober" and there is so much being shared - last year, I was the one sharing - I did a blog post a day for all 31 days of October. This year, I have been struggling with writer's block or apathy or something for the last few weeks tied into the hormones yes but also a bigger issue... A question, I guess, about what is next, what do I want to do how/ why and all that.
Why this is, I do not know. Things have been moving and grooving for me - I have had a bunch of speaking engagements, interest in my work (with my nonprofit) and I am reminded sometimes through my own ways that writing it down, getting it out and sharing is so helpful for both my own sanity and for others...but still, I was unable to do it until right now.
Why now? I do not know but I guess now is a good as time as any to say, "I'm back, I'm here..." but I guess because it was recently world mental health day and I can say that all of us need to know we are never alone and that our emotions are a part of our lives and need to be heeded.
I know that beyond hormones for me there was also a general apathy and/or maybe depression - which I can barely type because I have never known myself to be "depressed". I am often just ridiculously "happy" and although I have had anxiety in my life, I never often gave in to melancholy or crying in my past... NOT that there is anything wrong with that - because there is not - it just was not me to dwell or linger on bad stuff.
Now, though, after cancer and its treatments and life in general I know it can bring you down and that you should know you can get help, you can do something to help yourself however small and there should not be a stigma about feeling bad, down, depressed, whatever - even for ME the epitome of "go go go".
I had a therapist appointment recently - <Note:I have gone to therapists since I was in high school - yes, I said high school...- living with drama and divorce and stuff made me recognize early on that having someone to speak to was helpful and I went to my high school "counselor" for sessions and then in college continued the practice and have done so ever since.>
With my recent appointment, it had been a while since my last one and I was going over all of the stuff and my therapist was like, "Let's not put so much time between appointments..." and it is true - I had been neglecting my self and my needs and it led to my suffering maybe more than I needed to with my feelings / stress / etc.
I cannot do that again and I hope you won't either - dealing with a chronic illness like cancer is tough and though I laugh a lot, I definitely have been changed by the events in my life - for better and worse.
I am still trying to juggle it all but differently now - I do not want to do too much with any one thing - I want to make a living and help people but not be CONSUMED by it - I do not want to be "famous" - I want instead to help others quietly not LOUDLY with social media documenting my every move - I want to enjoy my children - it hit me recently that within a decade, I will have two college students - no more babies but grown people who can vote and shit and omg that was a big shocker to me.
What about you? What do you want?
This is part 2 of what I wish you knew - you can read part 1 here.
This isn’t complaints, though - far from it - this is my rejoicing - my testament of what it means to be truly sick...
There is beauty in illness - not for when you look in the mirror because in the mirror is hideous disfigurement (at first) until you realize something(s) I wish you knew NOW...
1- Your body is amazing - I love my body more than I ever did in my life and it’s ridiculous because I look like a Monster High Doll - where my right breast was is now a jagged scar line flat across the chest and into the armpit with a hole where the drains were... and yet, I recognize and respect this body - it took me through 2 child births I have a scar from my c-section, acne scars here there and everywhere and teeth that just don’t line up and I can go on and on but I know in my heart that I am beautiful, you are beautiful we ALL are beautiful. No, you don’t need to lose 5 pounds to say it. No, you don’t need to change your face to say it. We are all amazing what we do on a daily basis with these bodies is nothing short of miraculous.
1a -On the subject of bodies I will say that I did have to lose weight - my cancer was hormone driven and a specialist at Sloan told me that hormones hide in fat and that my stomach was just too fatty (best doctor appt everrrrrr not!) he told me a weight I needed to be and I did it... BUT it was hard af. I’m in menopause and if I look at food, it’s over so I had to basically relearn how to feed my body, how to move my body and how to keep it at a certain “number”.
2- I wish you knew that your stress your worries your constant anxiety is not helping you live it is quite literally helping you die. I spent years panicking, anxious and afraid and that was before I was diagnosed with a potentially life threatening illness. I realized that I could continue living that way and probably die like immediately just from a panic attack or I could find a way to stop being a prisoner to worries. You know I am chuckling right now that it took having something to really worry about to teach me to stop worrying. I recognize this is so hard to do but I see you stressed out losing it because of let’s say homework or bills or your friends and I will validate each and every thing but I will say does it change your life radically if any one of those things gets left off your list? Tomorrow when you wake up and the homework isn’t done or the bill isn’t paid yes there are consequences I’m not stupid but will you still have your health? And bam, mic drop. See for me, I can only hope and pray I have my health - as far as I know I’m “ok” but I still very recently was a cancer patient and I would give anything to go back in time to before I heard the words, “you have cancer” and bitch slap myself to death for being such a tool - for worrying so much about stuff that ultimately did not matter (stupid Lisa).
3- enjoy every minute - don’t wait to be happy. If you’re unhappy try with all of your might to do at least one thing a day to make you happy. Don’t fool yourself by thinking, “Well at least I’m not Lisa I have two boobs and no cancer why the hell should I listen to her? !” In my opinion, pity for others can just mask what you really feel like inside - I know I did a whole lot of pitying on others in my life thinking, “whew I am so glad that is not me.” And then a few minutes later I was back to the fear worry and unhappiness game of my life.
It’s a hard nut to crack happiness - in my soul deep down I have always been happy but I never did things to make myself happy - I denied myself everything from a night out with the girls to a day to sleep in without the kids - I don’t do that anymore.
4- which brings me to self care. I literally, before cancer, would have stopped being friends with you if you told me I needed to practice self care. I probably would have thought you were trying to sell me something perverted. Now I know what self care means - it means doing for me so I can do for others. As moms or just as women in general, we are the caretakers and we care for everyone and everything. Laundry to be done - guess who does it? Dinner to be made - guess? Lunches to be created from scratch to feed the damn pickiest kids on earth - guess? Cleaning, ironing, boo boo kissing, wrestling referee (damn my kids fight A LOT - yours, too?), bday planning, shopping, your dad needs to go to the dr, your mom needs an X-ray .... you get the idea.
When it comes time do getting our own time it’s never important. Well let me tell you I make it my business now to fulfill my soul each and every day - I do it in weird Lisa ways - I write books, I write blog posts, I run 2 semi-successful businesses and one totally unsuccessful one, I dance with my husband, I cuddle with my kids (if they will let me) and MOST IMPORTANTLY- I pretend I know what I’m talking about when I move my arms like this (inside Gilbert Gottfried joke from a movie my brothers always said they don’t know why people like me but they do and it must be because <insert Gilbert Gottfried voice> “when I move my arms like this people think I know what I’m talking about!” So do things for you find your passion take your nap the kids will survive someone might have to learn how to get themselves a snack omg the HORROR!
5-finally don’t take your health and well being for granted. If someone you know gets sick (ahem me if you know me) try to be a good friend by telling them that one boobs are in style by sharing my shit and by supporting my walk for the American Cancer Society - buy my T-shirt with proceeds going to my walk and just love yourself be kind to yourself and stay well! Also, focus on your health and how you can keep it - know that the whole world of "risk of cancer" is a bunch of bullshit. I had absolutely NO RISK FACTORS in terms of anything that the media tells us (besides from breathing in 9/11 dust and fumes for uhm 2++ years) but anyway, remember that your health is not guaranteed and to be proactive, know your body and if you ever need me for anything, I'm here!
My travel info (from the archives*) *bathroom drawer...
So here we are again, this day, this day that lives on in infamy that is getting longer and longer ago and yet is seared in my mind as if it were yesterday.
I was (am?) a traveler - always going, going, going and I just found my itinerary for my big trip to London and Rome in 2001... I flew to Newark on 9/10/2001 arriving at 430pm. I went home, went to bed and traveled into work the next day for an orientation scheduled for the new hires at my company. I had begun work at Standard & Poor’s (which was then a division of the McGraw Hill Companies) in January 2001 after a brief bout of unemployment.
I loved working Wall Street adjacent and I was so excited to be making $60,000 a year despite having been laid off from work at a ... wait for it... dot-com (most late 1990’s story EVER)... I liked my colleagues and they seemed to embrace me and my “type A / Control Freak” ways. They knew I would be on vacation and then going right to training on 9/11. They had joked that they were so jealous I was going to Europe and that I was young and single enough to do it and I joked back that I would ALWAYS be single (I never wanted to get married) ...
I slept well that night of 9/10. I woke up around 5am and got ready using some of the new things I got from Italy - I always used to stock up my wardrobe on my trips to my second home (I studied for my MBA in Rome and lived there for 11 months - life changing months where I learned a new language, got an advanced degree and FINALLY no longer had a curfew - big things, my friends).
My outfit was a new cream colored skirt with a blazer, matching and a shell top with the shoes that were just the whole point of the outfit - 1940’s styled ankle strapped cream leather shoes with a hard wood bottom and a wedged heel. (Readers, I have chemo brain, I can barely remember what I ate for dinner yesterday but this, this I remember).
I was dropped to the bus stop by my brother (heels=not my thing - I cringed at the thought of walking to the bus about 3 blocks away). He stayed home “sick” or “psychic” or something. My dad and youngest brother were in Texas visiting friends. My mom had just walked out on her job in NYC to find something local to Staten Island.
It was a beautiful day - “Indian summer” we used to call it. Sunny, no clouds, warm but not oppressively warm just pleasantly warm. I was so excited to get to this training and meet people from all over the world that were also new hires that year at the company. As we exited the tunnel, the bus driver’s small radio was talking about a plane hitting the World Trade Center and we all scoffed about some yuppie with a two seater accidentally landing in a building while we hoped no one was hurt.
I was one of the first ones who knew anything was going on as when I signed in to my training, I asked the desk if they had heard about the plane going into the WTC and they all looked at me like I was smoking something.
Our training was held in Midtown and it began with big floor to ceiling tv screens talking about all of the great things our company does when all of a sudden, everyone stopped talking. The screens switched to news and we all stood in shock as we watched a second plane hit into the other tower as the first tower was in flames. We were just absolutely shocked.
Immediately, the training was canceled and we were told to evacuate the building - that really no building especially not a high rise one like the one we were in, like the ones ALL OVER MANHATTAN, were safe.
We huddled in the hallway for a bit and all tried to use our phones - I had folks with me from Canada, France, Australia - all of whom had no way of letting their families know where exactly their building was - even my European friends I had just visited were in a panic (though I would not learn this until 12+ hours later) not knowing if I was at 55 Water Street or in a training in the WTC or what. I finally got through to my mom and told her I was “ok” but that I had no idea if or how I would get home then I told her the phone numbers of every person around me and begged her to keep trying them to tell the families their loved one was ok. My mom spent hours until she got through to every number.
I found a desk phone and called my dad in Texas (I was not getting long distance on my funky flip phone / current paper weight). I will never forget my dad’s voice as I told him, “I am in the city, we are under attack.” And he said, “What do you want me to do? I cannot help you - I am in Texas!” - this from the man who helped / did everything all the time for us - I realized I was officially an adult and responsible to get my own ass home in one piece, preferably.
Do you know that no one under the age of 17 years old even remembers this day? Do you know that for those of us who were there, physically there, we can never forget.
I found two colleagues from my local office, I will call them Joe and Pat. We decided to band together to try to get home - one lived in Staten Island (like me, the other New Jersey. As soon as we left the building, NY1 was there asking to interview us - I gave an interview that I know is played every year but that I HAVE NEVER WATCHED.
At the time, there was no way to get information period. Cell phones were useless, there were no smart phones, there were no iPads in our bags to check out what was going on - we were all “blind” in that we just did not know if or when the next thing was going to happen. We all walked looking up and we just kept walking. We tried to get hotel rooms, ha. We were way too late. There were none available. We went down by the west side because we heard there were ferries running to go around the island but there were about tens of thousands of people there. We then went uptown by Central Park to look for lodging. Finally, one friend, Joe decided to walk over the Brooklyn Bridge. I was not sure that would get me anywhere as we were hearing all of the bridges and tunnels were closed and the ferry wasn’t running either.
The fighter jets that flew overhead every few hours just added to our paranoia and fear. Me and those gorgeous heels walked the entirety of Manhattan, almost. Pat and I made it to Penn Station and his train was running to get him to New Jersey- he offered to harbor me at his house for the night with his family but I turned him down - I wanted to get home. I wanted to get back to some kind of normal that I knew already did not exist anymore.
I was 24 years old. I was scared and I was in the midst of the biggest attack on US Soil since Pearl Harbor AND I was wearing big high heels (worst decision EVER).
I began to walk south - a path I knew very well as I often walked from midtown downtown - it is an amazing way to people watch (which I love to do) and just stop in to stores and be free after a lifetime of curfews and rules... This time, I just marched alongside other stricken folks, everyone just in shock or crying or trying to be together - we were all together in this - though we did not try to document it - there were no selfies, no camera phones, no insta stories- it was just the connection in person amongst other shocked people.
I made it down to Canal Street - and the amazing first responders were there blocking off the road. I did not know it but my husband was down there - I had not even met him yet, though, but he was a first responder and was there basically all of the time for over 6-9 months. I am thankful at least that I did not have him to worry about specifically - I worried about all of the boys in blue, the firemen with their plans to rescue and the medical hospitals waiting for patients - I did not know yet that the influx of patients they expected would not come.
I found a church giving out water and sat on a pew and prayed. I prayed because I did not know what else to do when something kind of nudged me to go outside. I found a nice corner near the church and sat down out there to get some air, to think, to be alone when a bus stopped in front of me, opened the door and said, “Where do you need to go?” I said, “Staten Island.” He said, “Jump in.” And in that bus were the most ragtag group of souls, each of us just staring into space, absolutely unable to process what was happening. We went over the Brooklyn Bridge and we could see our missing towers, flaming smoke and silence.
I made it home that night, around 9 or 10pm and was inundated with emails, phone messages and lots of hugs. I smelt funny so I took a shower, wanted to throw out those damn heels but I kept them anyway. I responded to my messages and went to bed...
By the following Monday 9/16, I was back in downtown NYC, back to my offices in 55 Water Street. The ferry was the only option to get there. It looked like the skyline had been demolished. The flames and smoke continued to billow. The floors all around my walk to the office were covered in thick grey ash and dirt as were the cars and the buildings. My desk was covered, too. The smell was immense and unforgettable. ...
15 years later, I got cancer - first person in my family, no genetic component. I was encouraged through sharing my story on my blog by a high school friend to apply for the WTC Health Program and I did. It took over a year but just this summer, I received my official designation as a SURVIVOR of the ATTACKS. This grants me additional health coverage - things that cost me out of pocket with a high copay now should be processed through this additional insurance. And more - I have extra monitoring now and the possibility to be covered for anything that comes up later and could be attributed to the blast zone location where I worked over 10 hours a day from 9/16/2001 until I moved over to another location in 2004 ...
When I got my certification letter, I wept. Sunday at mass, when the priest spoke about 9/11 in his homily and mentioned all of the names on the wall of the dead in the museum and the many who continue to die from 9/11 related illnesses, I wept. I do not want my name on any wall like that unless I am already 95 and ready to go...
Today is a hard day for me. It is the memories, the thoughts, the validation, the love, the sadness, the immense feeling of, “but I am lucky” - so many people did not make it home that day, so many people continue to not make it home and gosh darn it , I am home, I am here. For as long as I am here, I will do good with the time I have left - I will help others, I will enjoy my kids, love my husband, deal with my extended family lol and just try to be ALIVE in every moment.
What is your plans for your time you have left? Let’s make it count together!
Last year's post about this day is here
Part 1 is what I wish you knew about how I experience the disease; part 2 is about what I wish I could teach you - the "good" that I learned... watch this space for more.
I have lots of friends...
I have lots of acquaintances...
I have folks I love fiercely...
I have folks I fight with fiercely...
I’m a mom balancing 2 kids one husband a puppy 3 businesses and a house and all that entails - I guess I can stop at “wife and mom” because we ALL know that means
Wellll, you get the idea.
Sometimes I get lonely. I have survivor friends from literalllly all over the world - someone from Guatemala (hi, Misch), someone in Ireland (love my Ro), someone in Florida (Amberrrrr) and even Queens (Vicky and Irene)... and the list goes on like Ohio Kelsey and if I forgot you know I love you xoxo
Local I have some amazing people too (Deb and Deb, Colleen, Gerri) ...
And then I have the mom club - the folks I love so much who I trust with my kids to do anything go anyplace but who sometimes I can get paranoid and think omg they don’t get me...
Or why did I joke like that about having one boob and that’s why I didn’t help my son with his homework more...
Or they don’t "like me"... And honestly, I am used to people not liking me. I spent a decade and change just being super focused on my home life only and not interested in being a good friend or being a well-rounded person...and even now, I am ok with it BUT I know I need these folks and I like to think that maybe, they need me, too.
I am still the girl I used to be awkward and unsure of myself in social situations and unclear how to make and keep friends lol. Sad but true.
Now more than ever I need friends -and I do think I add value and can help others, even those who have never been told, "you have cancer".
And I’m so lucky for the ones that I know put up with me and my idiosyncrasies and the fact that sometimes I feel there are two camps of people who make up my social circle.
Those who think I should be over it and maybe think I use it as an excuse for everything I do wrong or that I should stop talking about it because obviously I’m “fine”... I know the gossip train always goes around the station and I’m guilty of jumping on it too at times - though less now - I just don’t have the time. But I think there is not enough education about what cancer and it’s continued treatments entail for anyone who is unlucky enough to get this disease so consider this my crash course for those of you in this camp...
(The other camp is below...)
I never complain -
That is one thing I will boast about - I just have never been a complainer it doesn’t help me it doesn’t make anyone get it and to me it’s wasted energy but if I were to complain this is what I would tell you my friends who God willing will never "get it":
1- I often have pain in my right side it comes and goes it is from the tightness of the mastectomy operation they took all of my skin and cut it out then pulled it super tight and thankfully left me flat, as per my request (some women are left with "dog ears" or extra skin despite asking to be left flat - this is horrendous and I will write more about it at a future time). My right shoulder hurts on and off from the weight distribution being off between left and right side.
2-I am in menopause which means my whole body is off. I should have continued my periods until about 56 (going by my mom) - instead mine stopped at 40 via medical acts to turn it off - so nothing natural here. My cancer was hormone positive which means the cancer was fed by my hormones of progesterone and estrogen. I am now stripped of these hormones which actually do many things for our bodies that most of us take for granted despite hating the monthly "curse".
First and foremost is sleep. Sleep is a thing of the past for me - in order for me to fall asleep I have to run 5 miles, unwind for 3 hours, take a sleeping pill or an Ativan and lay down and keep my fingers crossed it works. With 2 kids who come in and out the slightest upset from them and I’m up and can’t sleep. Period.
Then there’s the whole my body no longer has moisture and I get a lot of issues around skin that rubs together and enough said on that but you will often find me with a hot pack on my crotch...
Also, weight is a big issue - hormones are stored in fat so I MUST keep my weight and belly fat as low as possible, which for a carb loving, junk food junkie, has been a hard thing for me as I now am a "skinny bitch" at 128-132 pounds to best help my ability to NOT have the cancer come back (which, ultimately, no one knows if it will help anyway but it is considered a good thing to do, so I do it, I would do anything to be "healthy" and die of something other than cancer.)
3- fear of recurrence or spread - this is a big one but I’m not letting it be number 1. No matter how much I smile and joke and be nuts (and maybe make you consider taking 3 steps away from me) there is no guarantee that I’m ok - let’s face it there’s no guarantee that any of us are ok but I see the dichotomy a lot clearer now - you can worry about anything you can think hard about your problems and then - hopefully-sleep at night - I literally cannot. My problem is that cancer might spread or come back (God forbid).
No one who has had cancer is ever cured.
The word “cured” is a lie. Once cancer is in your body despite surgeries and chemo and radiation and all that if it can find a place if it can hide out enough it can get strong and come back.
Recurrence means it is back in the same location. Despite cutting off my breast and removing alllll of it and the skin and the tissue there could God forbid still be a piece of cancer there somewhere that wants to grow and since it was there before it knows how to do it.
Spreading of cancer though is worse - it would mean it floated elsewhere as it did get into my lymph nodes (5 out of 25) and therefore could have spread throughout the lymphatic system (hence the 8 round of chemo I did to hopefully kill it) - so if it were to spread again God forbid to any other organ it would be a death sentence for me. It would be metastatic and the stats on that are 3-5 years ... let’s see my daughter would be 16 and son would be 13 — at the high end ... see why I say God forbid a lot.
4- I chose to be on a clinical trial which lowers my immune system and makes me
Susceptible to illnesses that would need to be checked in hospital. So I literally cannot get run down. If I run a fever I have to pack a bag and go to the hospital and be checked out and if I’m not cleared to be released I would have to stay for
5- The whole chemo brain is real and I really often cringe at what comes out of my mouth and how it might be perceived and how there are things now that go over my head in a whole new way - I always had no common sense but now it’s so much worse. I try not to get too wrapped up in it because I often assume my real friends will get it and those who aren’t real friends will just consider it another weird thing about me - and that’s ok - but I do occasionally worry about my real friends getting fed up with it.
6- I am consumed by my work - I am proud of it and want to share but don’t know how and it causes me to be confused about how to act in some situations - what I do is to me meaningful work it makes my soul happy and yet it also means I live amongst cancer and disease and you know what, it’s not easy but it’s a big part of my life now to help others who are still fighting (though we are all fighting in our lives, even you my friends who never had cancer - may it always be so - we are all fighting battles we each know nothing about)…
And in conclusion, cancer is a world of crap and it puts pressure on everyone in your life - including you all my sweet lovely friends and I hope this post isn’t going to alienate you or make you into the other camp of friends the ones who look at me constantly with pity and say “are you ok” multiple times per hour.
You’re probably thinking, "Well, what does she expect after this post I just want to ask her if she’s ok over and over again..." Or, "OMG get over it, Lee." - wherever you are on the spectrum, I love you. The middle ground, for all of us, is just to be kind - none of us know what battles the other is fighting.
I just happen to have a platform and an immense need to share to get it out so I do not keep it in and have even LESS sleep than normal...
You don’t have to like me, you don’t have to be my friend but just learn something about what it means to be a cancer “survivor” what it means to be a mom a small business owner a wife a daughter a sister and a friend who also has been faced down by something that if it could would erase my existence from this world.
And that’s when I say it again fuck cancer!
It is not all fear and worry over here for me.
There is also joy and celebrations.
Despite having budget concerns and my whole "what if" issues (like almost every cancer survivor I know - that ish is expensive) there is also some wins.
What are your certainties?
XOXO - Supermom