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
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?
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!
So here I am, a year and 9 months post diagnosis and still writing and talking about what it means to be diagnosed with cancer...
Some of you might kindly wonder why I’m still writing and talking about these things now and not just putting it behind me and moving on...
Some of you might rudely think I’m just stuck and need to get over myself and come to think of it you’re sick of seeing my body out there as an example of living after cancer...
Whatever it is you think I learned the hard way not to give a good dang about it. No offense please.
The idea is that God gave me the ability to write, to tell my story, to use my voice and shout it out and no matter what I don’t feel the time has come for me to sit down and shut up already.
Would it be easier for my kids if I shut up and stopped sharing? Well, since they see me everyday markedly different than I was before, no I don’t think so. No matter what even if I had reconstructed my right breast I would still look different and feel different too - my kids are used to popping (and I mistyped that at first as pooping lol that’s true too) in on me all the time despite locking doors and being private they can still and have still at times found me mid clothing change or in a wardrobe mishap (it doesn’t just happen to celebrities check out my pics from my luau we hosted and you can peep my scar instead of a boob).
I’m not ashamed of my scars or my body (anymore). I love myself from head to toe and I know there are many women out there and men too who have or haven’t been hit with the cancer stick and don’t appreciate or love themselves. It’s an epidemic and it’s also something that can’t be helped I guess.
You see there are things I wish you knew about yourself that you just probably can’t know unless you get hit with the cancer stick and trust me I will never thank cancer for nothing but I did learn some stuff and as an educator since, well, birth, learning is my favorite thing to do -
So here are some things I wish you knew:
1- Your body is your friend - love yourself, appreciate your body for not failing you, for being strong and carrying you through your days and nights as you work, love and live.
2- Don’t pity me because I got sick - but DO understand how quick the line between health and sickly can be crossed and just remember to always know what you need to be well and that no matter what there isn’t a guarantee you’ll never get sick.
3- Don’t sweat the small stuff - and it's all small! Seriously, I see you all worried about what someone thinks of you or something equally small and inconsequential from my seat in my Chemo chair history and all I can say is that you are wasting your time, wasting your health on something that ultimately doesn’t matter. The only things that matter to me are A) am I helping others? and B) am I a good mom/wife/friend etc?
We all, deep down, crave a meaningful life with relationships and love but what we do is posture around like that doesn’t matter and fret about every little thing (I know I did). And yes it’s in that order because I do believe I was a great mom always though I wasn’t a good wife or friend but that’s ok I learned the hard way how important that is - helping others is really in my opinion the currency of life...
4- Know your worth and don’t squander your time, attention and health on stuff that doesn’t matter in the long run. Find something you enjoy doing no matter how small no matter how silly it seems and do it - try not to worry about bills they will always be there but do try to find something that will fulfill you.
5- Do not stress - stress is the absolute worst thing for your health your body and everything around you - I used to stress and worry about everything then I got stage 3 cancer and now when I should, you know, be worried I realize the futility of worry -
it did nothing to keep me well to get me well or anything and that brings me to my last lesson today...
6 - Don’t ever think “it can’t be me” -- it can be you - risk analysis and or thinking in terms of never are a big way to lead to disaster - I thought it would never be me but I did my screening mammograms anyway - imagine if I didn’t - I would probably be dead.
Every day is a gift live in the moment and know who has your back and always keep them close.
This is what I do in the time between.
I am a unicorn. I had breast cancer in my right breast and I cut it off. Well, not me, my surgeon. I knew right away I did not want to reconstruct. I wanted to just get the cancer out and be able to "bounce" back to my "normal life" as soon as possible.
For me, normal meant being one boobed. I had no idea what that really meant, though, and I spent time hiding it with a prosthetic and now I just free boob it - there's only one of them but I am still ME and I pose topless now to share my feeling of being in my skin, body positive and confident... If only I could have felt that way even with the other boob but better late than never!
Welcome to my blog all about survival, being a mom, being a breast cancer survivor and the art of BALANCE.
I was blogging about life, love and being one boobed over at The Time Between Is but found that site to be better equipped to sharing the survival tactics through the nonprofit I founded called Career After Cancer. This site will be where I share my truth - my unvarnished story of balancing on one boob.
If you are also in this with me, welcome to the club no one ever wanted to join. I hope instead you are just here to partake in the voyeurism of how a modern day Type A personality learned to let go and live within the confines of this thing called "NED" where you technically will always have cancer and you try, just the same, to be the mom you once were while recognizing all of the stupid good that came out of being told, "you have cancer".
And screw me because I never would thank cancer for ANYTHING and in fact, I wish every day that I and anyone else with this disease would ALL never have gotten it and that it could be eradicated off the face of the earth - so this is my open letter, my space to be and share all that I wish people would understand if you have perfect health, embrace it, know your risks though and do not be a jerk to those of us in the cancer community who struggle scan to scan, appointment to appointment and just want to be here to embrace our kids or have kids or just to be alive.
Thanks, your friendly neighborhood superhero, cancer mom.