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
We only have so much time and yet...
The little things still chafe. The stresses, the worries, the thoughts of not enjoying the moment because the moment is just too much.
I balance so many things on my one boob - a budget that never meets up where it should, a family that just keeps moving one way when I want them to go the other … a new school year pressing down on us when I did not get enough of summer yet. I did not get enough.
I see people constantly getting bad news. News that their cancer is back or that it is incurable. People who are dying left and right. And it is almost October - the month of pink when everyone says, "Breast cancer..." but no one quite gets it.
I live in this time of in between - this world of I do not know - someone who once could only live in the world of certainties and knowledge, I now live in the world of what I do not know can't hurt me... yet.
And yet …
I am NED (as far as I know). That means that there is no evidence of disease in my body - I was given those words back in December 2016 after my mastectomy and lymph node extraction, despite having 5 / 25 lymph nodes test positive for cancer - I had a pet scan a few days before my mastectomy so I guess that was how they knew to say NED. I did chemo scared to death til a nurse told me kindly, "this is just being done as an extra - all of your cancer is gone."
No one really knows, though. Every time I open up my Facebook or my Instagram, there is more bad news. More friends and acquaintances and people I do not even know but feel I do through the blue screen, the small squares, getting bad news, facing death, kissing their kids and not knowing if it is the last time or now. And I am crying. Crying for them - for their children, for their unborn children, for their friends and families. And I know I cannot spiral - I cannot go down the road of "what if" or "how will it happen" I can only live in the moment. The moment of suspended time where as far as I know I am ok - but the what if is still there - I run from it but it follows me like a bad stalker.
The story of Rachel Bland, I can share - she is someone who shared her story even in the moments before her death at 40 years old, leaving behind a 3 year old son and family and friends. She is - was - a journalist and was part of a podcast out of the BBC that two of my insta "friends" are on (I put friends in quotes because although I feel I know them and maybe they know me, it is in the world of square boxes not in real life...) She was diagnosed with breast cancer that had spread to the nodes and in April 2018 was told it had returned in the opposite side of her body and chest... yesterday, she died. In 5 months she went from recurrence to incurable to death.
That is just the story I feel comfortable sharing because she was so vocal about cancer and what was happening to her body and what ultimately took her from this earth.
As a mom, it hurts me so much to think about the what ifs. But not just as a mom - as a person. All that I want to do - all that I am doing, the people who count on me, who love me , who hate me, who tolerate me, who can't stand me - every thing in relation to me in the orbit of this "post"-cancer apocalypse.
I try to keep in mind that life changes on a dime for everyone but sometimes as I straddle the worlds between "health" and "sick", I see it is not the same for all. Despite all of my fears, anxieties and worries before diagnosis, I never really thought of the "what if I am not here anymore..." It was not until Cancer that mortality hit me in the arse - hard.
So I let it out, I write it down and I try to get back to living. I have spent the last days of summer away on vacation, enjoying life AND working- it seems being busy is the best way to suppress the negatives. Now, as I face getting kids back to school tomorrow, back to routine, I just have to stay in the world of "TODAY" and not "what if".
How do you handle the world of what if? What do you do to help yourself not go down the road of negativity? Today, I will cry, just now, before the kids wake up and need my attention, before my conference calls are scheduled, as I work on various projects, I will weep. It might help... Does it help?
This is "life after cancer" … XOXO Supermom
Super Mom BC Eradicator - connect with me via the icons above :). Thanks! XOXO LISA (my secret identity ... )