Last week was a very big event - my son received communion! 3 years ago, my daughter received and it was so important to me as my faith has always been a big part of what makes me me. I brought Sofia to mass as a little baby and then when her brother was born, I brought the two of them to mass all of the time - and it was NOT easy. Waking up early as a mom of 2 kids, I would dress them and drag them to mass for 8am. They would often resist and / or complain. I did it anyway - even chasing my son up and down the aisles.
On Saturday May 5, it was the day. I kept thinking each week, “Ok, I have to get through these next few days…” - it seems every week, there was something else to do, some other event to handle between sports, homework, activities - having young kids and a new 501(c)(3) (on-helping-others-as-a-501c3.html) is fun and challenging as I keep trying to balance my need to write, my need to do more with my very much needed life at home.
A balanced woman is hard to be - it seems the kids school days are getting shorter and shorter and between working out and trying to eventually see my girlfriends and spend time with my husband and extended family, it is hard to balance.
Today is mother’s day and it is fitting that I am getting myself more on the “balance” train and trying to manage the many things I want to do and how.
We took photos together at communion and I have just a few of them. I guess if nothing else, we can all agree that I look hella different from 2015 and 2018 (see below).
To think, my daughter’s communion was exactly 1 year and 6 months before my diagnosis of breast cancer at 39 years old. And then, to also think that last year, I was still undergoing chemotherapy until May 1st. I was lucky that my chemo was a year ago and that I was able to kind of have gone through this “metamorphosis” for my son’s communion but really I am just happy to be here, to have been able to sit at his communion with my own hair and my one boob and just be ME.
It crossed my mind only once during the ceremony - the dreaded, "What if?" and I just pushed it away right quick to live and enjoy the moment and not worry about what cancer might do - if it does God forbid spread or come back or otherwise make my life be in danger. Instead, it was with a deep breathe, that I sat in that church and watched my son receive the body of Christ that I exhaled and said, "No what it's, just TODAY."
I am lucky and focused on trying to do the balance - it is hard. I do know that time goes quickly - well, in a “the days are long but the years are short kind of thing”.
So I try to balance and take care of me and the many goals I want to accomplish with my 501(c)(3) along with enjoying the moments, the moments that continue to fly by and change me from a mom of two babies to a mom of two young kids to someday, God willing, a mom of teens and beyond…
Fitting for mother’s day to share that…
This is what I do in the time between...
PS: Happy Momma's Day again :) XOXO
As I prepare for mother’s day - well, yes, we mothers prepare for our own holidays (we get it) lol. We have to clean the house and organize the events and make sure all of the other mothers are getting cards and/or gifts from the family (read: husband and kids) and more.
As I am getting these things "done", I cannot help but think about all of my past mother’s days and the different ways I focused on all of the wrong things, year after year after year and to forgive myself for it.
When my daughter was born in 2007, I was on maternity leave for 10+ weeks and during that time, I felt (as I guess most of us new mothers do) like I ceased to exist. For most women, maybe, this feeling passes or gets less with time but for me, it did not. I continued to feel as though what ever I needed was not even on the list of things "to do".
I worked full time in NYC and made a big salary and I hated leaving her but I also enjoyed a bit of pretending to be able to attend to my own needs at work for a few hours… but then, things got bad.
My husband got sick and by that first mother’s day, I was just clinging on and hoping, praying for a day where keeping my daughter ALIVE did not rely on me. (And yes, it felt that dramatic - there is no, “the baby will tend to herself” and at the time, I had no help officially available to me beyond certain set times…) I just wanted a day to sleep in - it seemed like such a luxury - to sleep uninterrupted without having to get up and do something for the baby, who I loved more than life itself but my body and mind wanted just one day. One day.
Reader, I did not get it that one day. It seems laughable now but at the time and in coming years, I continually held out hope that that random Sunday in May would be the day I could rest and be "me" without having to run around like a lunatic but eventually, I embraced it and I could see no other way to be so even that one day was not one for me to take off but to keep going …
My first Mother's Day 2008
I took this to the extreme even if help did become available, I was not interested in it. I had become a one woman machine - getting diapers, bottles and whatnot - toilet training, removing the bottle, nutrition, activities, homework, etc etc. I was a dynamo. People marveled to my face, “I do not know how you do it.” To my behind probably something more like, “That woman is a control freak!”
I was in this pattern and ready to continue on it - did not anticipate where I could let go or how. I had no clue. I was a bad friend and definitely someone who was not the best of “support” when it comes to my husband but he also had his demons and issues, towards me… So we can call it a draw.
Then, bam, I was hit with cancer. How in the world would I be able to keep doing what I was doing the soup to nuts of everything with my kids and work full time and survive? The main question I had was on surviving. I struggled with what hospital to go to, mainly because of the kids and my own fear of traffic.
Ultimately, I learned slowly and painfully that the old way was dead. That in order to survive, in order to truly live, I had to let go of being the control freak worry wart mother who did not allow sleepovers or play dates where I could not be present (omg, I hated that version of me but at the time it was all I knew how to be so I forgive that version of me and love her again)...
It helped immensely that my kids WERE 6 and 9 when I was diagnosed and not 2 and 5, though it was still hard for them (and me) and it continues to be hard for them to adjust to this new normal, too (and of course, me, too though it should go without saying - this new normal is one you have to adjust to each day, and it is different each day, too). I say all the time that it is not just the patient who gets cancer but the whole family - friends, too as most of them are close as family…
So on the eve of this Mother’s Day, I think to myself, “the kids are all right” part prayer and part belief in it and most importantly, or just as importantly, I am, too.
I have big ideas for the rest of this year and next - I hesitate to say, "plans" because the truth is we never know what the future holds but I have my ideas... I want to focus on my nonprofit 501(c)(3) career after cancer initiative - I want to travel and spread my training and books around the country and maybe beyond. I have so many stories to tell in my fiction writing, even beyond my first publication in the Visible Ink anthology.
I want to spend time with my kids and family, too - first and foremost and I am going to go easier on myself in terms of my “deadlines” and “planning” as though I am a project manager and this organization is my baby, my project but my kids are on the list, too. And every day, they get a bit older... pretty soon, they will be more and more independent and I know I will miss these days.
But, the big news for me personally and spiritually is my trip in February 2019 back to my second home, Rome. The home I left 20 years ago. Where I grew up. But listen, do not tell my kids yet - they do not know! It’s a trip I am taking without them.
I am not just going to Rome but also to see San Giovanni Rotondo, where Padre Pio is - I feel as though I am being called to go and so I am going. More on that in another post. This is what I do in the time between.
Slideshow of Mother's Day Past :)
PS: Happy Mother's Day to my golden girls in Heaven and of course to my mom who always has my back and yells at me only sometimes and to my mother in law, too, who also has my back. I am a lucky girl & my kids are lucky grandkids!
Me & Dad at my 2005 wedding :)
So you would think that going on vacation after breast cancer dx and treatment would pale compared to vacations of yesteryear -- but you would be wrong!
Why is this and what is wrong with your writer? Simple - the word for it, I guess, would be “anxiety” - or just “fear” or just “stupidity”. When I think back about all of the things that I worried about when in reality, I had nothing to worry about I really do want to have a flux capacitor to go back in time to kick my own ass.
So summers past getting ready for vacation would boggle my mind - I would pack everyone and panic the whole time, thinking about the ride to wherever we were going and whether or not there would be traffic. Yes, this girl, who lives in the most densely populated area around had an anxiety disorder around being stuck in traffic.
It was something that creeped up on me little by little over the years - my world got smaller and smaller but not overnight - over years. I went from traveling the world, living in other countries and states and even doing the 27 hour flight to Singapore without a thought. It was just “living” and I did a lot of it - I mean, I used to fly to Rome for the WEEKEND. For the weekend! Crazy.
Then, little by little, I got less and less adventurous. I started to really think in terms of “No, I cannot do that!” Before my “real” wedding (after we eloped alone) was my first inkling that I was developing an issue.
All of a sudden, I could not take the subway anymore. I had taken the subway ALL OF THE TIME but now, I got the intense feeling that I would need a bathroom during the times when the train stops and waits - at times this could be 4 minutes or 4 hours (ain’t nothing like the good ole’ MTA). What a weird, random thing to worry about but it consumed me for many years - this fear of needing a bathroom when there was none…
Looking back at when it all began was around the time of my church wedding. I was really worried about my wedding - we had eloped, yes, but had planned an semi old fashioned church wedding with party for a few months after our elopement.
All of a sudden, I was convinced that something bad would happen at my traditional wedding. My dad, who had raised me as a single dad, and my mom were basically still at war even then almost 15 years after divorce and my mom would be at the wedding with her new-ish husband.
My dad had hated the fact that I lived in “sin” with my husband before marriage and I just did not know what would happen at the wedding - would he not be willing to walk me down the aisle? Would he be angry at me? Would my mom do something crazy?
It was all a “loose cannon” opportunity to someone who had been raised hearing ALL OF THE TIME about how my mom’s dad refused to walk her down the aisle and how this meant she had no family and that the marriage was cursed, etc etc. Now, here, was the perfect opportunity (down to the same CHURCH) for history to repeat itself.
My mom was to be my maid of honor - I had been hers more times than I could count (ok, twice, two times, two different marriages) so I figured it was her turn to do the same for me. I had no real “fears” about her doing her job - she had been in enough weddings as a bride to know what to do (lol).
Leading up to the wedding, I knew something was “off” so I went to a therapist (not a new thing for me, I began therapy in high school just through my school and college, too) and walked out when she blamed my fears and anxieties on my childhood and my parents. I do not abide by that - not just because I am a parent myself staring at the precipice of childhood trauma with my cancer diagnosis - but I just feel that anything going on with me in my late 20’s though maybe jiggled into place by a fear around history repeating itself at my wedding is not anyone's FAULT but mine for how I see the world.
(Also, at the time, I struggled with even pinpointing what my issue was - it is only now with present’s 20/20 hindsight that I can figure out what it was…)
Oh and see that picture above of the 5 of us, my "core" family - it was taken in 2005; the last such picture I have of that group is from my college graduation in 1998... so was stress really that much of a surprise?
The wedding went well, my dad walked me down the aisle, crying audibly the whole way - weird as he is not really someone who has even been “emotional” - and the party was awesome but the fear and the nerves did not go away.
Shortly after my wedding, I turned down a travel requirement for my job and told my boss I did not feel comfortable flying for the short term. He looked at me like I was nuts - me, the girl who hopped on the plane to Singapore without saying “boo” who flew to Florida, Ohio, Iowa, Italy etc was asking to sit out the next flight. And the next. And the next.
This did not go away even when I changed jobs to my big step to being a VP and a big salary. I still had this “issue” - some days, I could not even make myself commute to work and instead worked from home.
It was debilitating and yet, I did not realize it or would not realize it. So vacations past were a hotbed of anxiety, fearing the road trip - me who used to live in Boston and drive to NY on weekends just for fun - could not fathom a trip to Pennsylvania without worrying and fears and being a nut.
So, facing cancer, if it does nothing else for me, made me realize I cannot live in FEAR. Commuting to NYC for my initial appointments, stuck in traffic on the FDR, I looked at my reflection in the cab’s window and said, “You have cancer - you cannot be afraid of anything anymore. Your worst case scenario came true - this is what fear breeds, disease, illness, death. It is OVER.”
And, for some reason, after years of journaling (is that a word?) and worrying and thinking, I felt it let go. When it tries to come back, I remind myself, “I faced cancer, I can face ANYTHING.”
I just wish I had been able to learn this lesson without the potential life threatening illness BUT I non friga nienta because at least I learned it. So if you ever see someone peeing on the side of the road, it’s me and I do not care :). This is what I do in the time between.
A few minutes before walking down the aisle, this is the face of "oh shit, please don't let this be a disaster!"
There are so many things I have had to let go - past hurts, past grudges - things I would normally be able to hold onto for decades are now, all gone. I am transparent or as transparent as I can be by sharing my story and being as authentic as I can in life, love and all matters in between.
Sometimes, though, I have a flashback to when I was going through chemotherapy and it hits me hard in the gut how people can be so cruel, so small minded and so dumb regarding the body's potential to turn on you and how it can happen to anyone, at any time.
I hate to hold stock in karma and the truth is that I wish bad on no one - I do not have time for that. I have made choices and conscious decisions around letting go and probably not pursuing things that if I did pursue might make my finances less grim.
So turn the other cheek is what I did and continue to do but sometimes, I have a flashback or a nightmare and it hits me that there is evil in everyone - that some people exist to be the villain in their own mind and you know what, I pity them. More importantly, I hope that karma skips them - let them continue to live in ignorance and enjoy their healthy bodies, their two boobs or two balls or whatever and let them know that I pray for them - I pray for them to never experience what I did and that though I am broken and battled, I will always be kind, which is more than I can say for them.
My whole life, I have experienced things differently than others. I know a lot of people who fall apart at the drop of a hat and I was always stoic and focused on how to survive the things that happened instead of wallowing in them.
I have had people "pity" me before I got cancer. Pity sucks and I thought I had written before about how it is a useless emotion. I pity you and think how lucky I am to not be you and then moments later I am all pissed off about something not working the way I thought it should. At no point did anyone learn anything, anyone help anyone, or anything positive come out of that experience.
For me, there are times when I am reticent to share my story upon meeting someone new or when talking with folks. I do not know why this is - I am almost ashamed of it but there are some people I can sense off the bat would pity me harrrddd and though I am used to it sometimes I just CANNOT.
As I said, I have experienced pity before being a "motherless" child - through divorce, not death, marrying a cop who had some issues - to put it mildly, having had miscarriages and being broke and well the list goes on... I always have and will continue to hold my head up high despite the drama the pitying looks and all but sometimes I tire of being this "sick person" who is pitied.
You know, I am not sick. I do not *feel* sick aside from being tired but I was always tired even before cancer and its treatments. I know I have written this before but it bears repeating for any newbies reading this - when you are diagnosed with cancer, throw out your experiences of what it is like to go to a doctor. Before cancer, if you do not feel well, you go to your doctor and they make you feel better. During and after cancer, you go to the doctor and you get hit with treatments that make you feel worse, worse, worse than you can imagine.
Then, once you are "done" with all of your active treatment, there are still more things you must do such as hormone therapy and/or ovary suppression and/or clinical trial and/or just hope and pray it never spreads (God forbid) or comes back (also God forbid).
You know you cannot live in the mire or in hiding (trust, I did it for a while and I could not any longer hide but instead went loud and proud by unveiling myself in this blog). Sometimes in telling your story, you feel so empowered like a kick ass warrior women who knows how to manage it all but then you look at the other person who never had to deal with cancer and you envy and worry about wow how much it would have been amazing to go back in time and never to have been told you have cancer...
Now, I know it is hard for me to ever hide this shit as I have only one tit and oh a blog that about 2400-3000 people a WEEK are on and reading; not to mention my Facebook and Twitter accounts that are also kind of broadcasting the fact that I am, in my own mind, a cancer survivor.
However much I call myself a survivor, my doctors at Sloan would not as there is something about a 3-5 year window that needs to be hit before that word is given to you. That being said, I am okay with calling myself a cancer survivor (just recently, though). I was calling myself a survivor in training but I decided to just go for it and promote myself because I do so believe that a bulk of this crap with cancer is mental and physical and luck and out of my control.
When I created my hypnosis script and mixed it with a meditation tune in February, I was so damn happy about it because in my mind it is another layer in my defense - I am hypnotizing myself to believe there is no sign of disease anywhere in my body, plus I am exercising and staying low on the scale to help with risk of recurrence and eating healthy and using only organic crap in my hair, on my face, on my body etc and STILL I know as much as the sun will rise tomorrow that there is still a 30% chance that I could become stage 4 and die from this disease.
I do not know what other people know about these stats, though, when they pity me. I do not know if they know that stage 4 is the only kind of breast cancer people die from or if they just feel bad my hair is so short, my boob is one less or that my kids went through something life changing at such young ages.
I do know that no matter what, I keep sharing my story, meeting more and more people and struggling with my own fatigue to figure out how to execute on even bigger things to help others who have been told "you have cancer". May it never be you or someone you love but if it is, I am here for you.
This is what I do in the time between.
In keeping with my promise to myself, I have been focusing more on self-care and on being kind to myself. What does it mean to be kind to myself? It means I am not beating myself up anymore about things I cannot control or do much about in terms of finances, stamina and just whatever else can come up.
I do want to do so much and I still plan on doing it but in pieces and much less showy. I also am still very active on my Instagram, despite initially thinking I would not be. Insta is really kind of my lifeline, my connection to others who have walked my walk and who can understand how I feel.
I have been slightly more social of late, too with some parties and events I have attended. That is all great but as we all know, sleep is impacted by the aftereffects and current effects of treatments/medications so I have been more tired and also trying to manage out my time effectively. I want to enjoy more with my kids and focus on all of my blessings - the fact that as far as I know I am NED and that last year at this time, I was just wishing I could survive chemotherapy and be considered "normal" again.
Now, though, is the wisdom that I cannot be "normal" again - though I see myself as still being "me" I am not the me I would have been had my plot twist of cancer not hit me right in the middle of chapter 39 of my book of life. Instead, though, I am starting to love this new me, this creature who knows what to do though I forget often enough that I need to remind me to be nicer to myself, to know what I need to let go of to say fuck it all when my bank account goes red to not fear tomorrow or to think about how to handle tomorrow but instead to enjoy and think about today.
Unfortunately, no one knows what tomorrow will bring but when your yesterdays are full of chemo, surgeries and learning this new vocabulary of cancer, you kind of learn that today is the shit.
So today and yesterday, my kids are home (thanks nor'easter #4 in 4 weeks!) and instead of obsessively planning out my next steps and what I want to do, I have been watching movies, cleaning & laundry (it never ends the cleaning and laundry involved with being a mom/woman/etc) and just enjoying my little people and my family, too.
Wednesday night, I got to fulfill a little dream by being able to walk on a runway for my kids' school. I thought I would be one of many moms walking but I was the only mom who walked. Lately, with my new makeup skills and the use of a makeup artist, i have been feeling glam and fab - but not too big for my britches than to also post photos of me looking ridiculous and spikey!
In between Wednesday night's festivities, I have been home and reading and resting with the kids (or when they are at school, just on my own). That is my solace, my escape - I read and it is like watching movies in my head. I have wanted to write but I have been loathe to get my laptop and start going at it ... today was the first day I had the urge to write.
Last year at this time, I still had 40 days left of chemotherapy treatments... I refuse to get down about anything, though it is a challenge to keep myself focused on the positive...Check out my pics & my video of me on the catwalk and let me know what you think! I had always wanted to model something and this dress was perfect for me and my one boob-situation - you cannot even tell! Some of the women there were telling me how brave I was to model and I was like, "sister, I had a boob cut off, this doesn't take much bravery!" ... This is what I do in the time between...
This blog has been for me and continues to be an online diary, in a lot of ways. I share things that I really did not think I would ever share with more than my own private diary and it does help me put it out and I know it helps others to read it. I am sure I get some looky-lous just showing up to read about stuff they hope to never experience (with 3200+ people this week alone on my blog, how could it not be so) but overall, I think we are all here because we are or we know or love someone with cancer.
I have been very unkind to myself, friends. I have been pushing and stressing and trying to build an empire when I can barely make it through my week. What does this mean? It means I am moving too fast, trying to do too much and I am not really sure to what end.
I want to be an entrepreneur and make my own hours with The Next Step but I do not have the stamina or the mental wherewithal to get it where I want it to be and let's be honest, even pre-cancer me struggled to really get to a point where I could say, yeah, this is a living. It was not a living. It was a constant fight and struggle to get in front of people, to sing for my supper, so to speak and I did it and then got offered a full time job and did not even think twice about walking away from that endeavor.
Now, here I am, battered, bruised and missing a tit - it is just something that although I live for the flexibility, there will not be the financials to justify pushing, clawing and presenting my way through the next 6-8 months to even get somewhere.
Then, I am trying to build so much around career after cancer when as you all know I have yet to find a job period. It almost feels like a bad case of imposter syndrome though I do know I can help others with my background and lessons but just the thought of launching this is giving me such cold feet.
My children's book is my passion but just getting it out there costs money and to be honest, as I have been before, my budget is broke.
Here is where it all comes together - I need to let it go. I cannot change my budget or my financials at this time. I do not have the stamina. I went out dancing like a fiend on Saturday night and then spent yesterday in bed and today I am coming to you from my couch without the energy I needed to do a practice of my first presentation via seminar.
I beat myself up too much, I get too pulled in with trying to be something I do not think I ever was. I have always been the person who needed 8+ hours of sleep, even before cancer. I have always been a bit of a homebody who struggles between being totally outspoken and social and really introverted.
I need to promise myself some stuff.
1- I need to forget about my finances and stop trying to correct them, add to them and/or freak out about it anymore full stop. I spent the other night in my bed so sad thinking about the job/opportunities I just do not think will work out and/or the ways in which I cannot continue balancing it all out and my husband and children came upstairs to hug me and to tell me how much they love me.
THAT is what is important and is what made the tears fall more than the sad thoughts about budgeting and being broke but instead about how much I am loved and how much I have to be here for it.
2- The financial toxicity of cancer is not just something I am going through - everyone who has been diagnosed and gone through something knows it is true. There are costs you cannot budget for and the biggest cost, for me, has been my mental capacity and my stamina (the former is still pretty decent but man it used to be so much more and the latter while always bad is just so much worse it is comical). I do not think I have it in me anymore to rush around to multiple places a day to sing for my supper or even to manage out the ability to have a set schedule of a few days a week.
When I feel terribly about it, which I do, I want to shake myself and remember that is has not even been a year since my last chemotherapy yet (May 1; coming close but not here yet) and that money is only good for things. Health is most important but it is so hard for me to get that when I have things I need to pay for but cannot. I also have things I want to pay for but cannot. I have said before that our budget was often bad once I opted out of full time work in NYC but this past year (almost) since I stopped working due to being laid off it has been the worst ever.
3- I need to stop focusing on sharing and sharing and sharing so much all the time. Although it is wonderful to share for sharing's sake, getting sucked in to doing it for ego and/or for "fame" is something I do not want to do. I want to treasure the relationships I have built, never exploit them and to just enjoy life whatever is left of it.
This means I will scale back on my guest posting, my constant sharing and my self promotion. I do not want to ever make money from cancer PERIOD but I also do not want to trade in my authentic self with something cloying and/or manufactured. This is me, I am half flat, I still want to focus on healing and being out there so much means I have less to give to myself... and that is not acceptable. I will still update my blog but I will use Instagram less and not jump so much as the chance to do X Y or Z for the thought of making myself the face of something. I am just ok being the read end of it or the missing tit of it - not the face, it is not necessary.
4-I need to enjoy the little things more and not think about how to post it and/or share it - ironically as I am sharing this but the fact remains that writing things down and getting it out helps me and if in turn it helps you too that is an amazing byproduct of what is basically my self therapy...
5-Health is most important -putting this last but it should be first. I want to just balance out my sharp edges - my fears, my anxieties now shifting from cancer to bills - it is not acceptable. I survived fucking stage 3 cancer, so what I am struggling financially to hit certain things - I am not alone in this. I am lucky, I have my house, my food in the kitchen and husband, kids and dog, too. Oh and parents, mother in law, friends, brother(s) - only one is speaking to me but that too has to be let go of because I cannot keep it all inside or worry about it.
This is what I am doing in the time between - trying to learn to let go of what is poison and focus on what is good. As I have said before, a bunch of people in a room slap their problems down like playing cards everyone will want to pick up their own problems to leave the room with so I won't stop smiling ... just have to stop worrying.
If you are a breast cancer patient or know one or love one then you might know that there has recently been some new developments around how to stage breast cancer. I had heard of these changes a few months ago but did not have the courage or interest in looking it up - partly out of fear- whenever you google stage 3 cancer (go ahead, I will wait) you see things like “72% 5 year survival rate” and you can sit here and worry about which slot you fall into - the 72 or the 28… so I am very leery of googling anything as I think everyone with any kind of symptoms or illness is because you google and Dr google tells you “that's not good”.
When I heard about the new staging, I also heard that anyone who was already staged would not be re-staged but I am currently not sure if that is still the case. I was spurred on to look into what my new staging would be after seeing an IG friend @mycancerchic (www.instagram.com/mycancerchic) story where she recently presented for an organization (hey anyone need a speaker in the tri-state area, check me out here) and while there met with a surgeon who had the “cheat sheet” so to speak of staging. Anna found out she was now a 2A whereas she had been diagnosed at a higher stage. This got my thinking and moving so last night, I spent a few hours tracking down some resources.
Yes, a few hours. You see, the staging change is recent so a lot of information out there is still on the old information. Plus, I did not want to use just any link, I wanted it to be a trustworthy source.
I am sharing here what I found with instructions of how to re-stage yourself but remember, I am not a doctor so you should consider asking if this even makes sense to do for you and your health. I am a nosy wanna know it all so I had to check it.
I had to use my pathology report (readily accessible on my MYMSK app but for other people might be in a folder you got at your pathology meeting and do not know where it is)... You need that report to figure out the new staging. I found that my “tumor” was a T3, meaning it was larger than 5cm (there is also a T4, I will get into that in a bit). I also had to see what my “N” rating was - this has to do with node involvement and for that I was N2A as I had 5 nodes out of 25 test positive for cancer.
At the time of my surgery, December 2016, this made me stage 3A. I knew, though, even then that if my tumor was 5cm (instead of 5.6cm) and if my node involvement was 4 instead of 5 that I would have been a lower stage. This was disheartening, especially because I was proactive and did yearly mammograms, had no lump, family history, etc and in April 2016 all I had were “microscopic calcifications” that had 98-99% chance of staying benign and my local hospital had spoken about me probably being a stage 0 or 1. Then, bam, stage 3A, what’s up. It is of course just a number and it is infinitely better than stage 3B, 3C or (God forbid) 4 but it was still shocking to have that out of nowhere happen to me. I got over it quick though and went back to smiling and dealing with it.
Now, though, with the new staging guidelines, my T3N2A GRADE 3 (highest grade, of course, just like in college this 4.0 only knows how to do the “best” but in this case, of course, it is the “WORST” as this means my cells were all kinds of fucked up) and with my ER/PR Positive, HER2 Negative information, I am stage 2B.
Not a big difference you think though as Stage 2 only has A and B but the 5 year survival stats for Stage 2 is 93% versus stage 3’s 72%. That is a big fucking difference. Now, as most of you know, I live my life as though I am cured anyway so I do not get bogged down in the potential for disaster BUT of course I have my moments where it hits me that the clock could run out before I hit my last shots, before I get to see my kids grow up, before I am ready to say “OK, I have done it all and am ready to meet my maker.” You know what I mean.
So this is a huge jump and of course, I know that with the re-staging I just did to myself, there is no medicine behind it - as in, I am not sure if I would ever officially be re-staged by my medical team or if this is even valid but in my heart it is something I just know to be true so who cares who confirms it?
So think about it if you re-stage yourself, it might not officially mean anything but it is interesting to see especially for those of us staged within the last few years - I mean, I was staged December 2016 and these new stages came out in December 2017 so it was real recent.
These are the resources I used - you need to go to the Cancer.org site to figure out what your T and N means given these new classifications and then take that information along with your cancer type (hormone, HER2, etc) and Grade (1,2 or 3) and then go to this Komen page and find your “new” stage.
So, what happened? Up or down? Again, please note that I am not a doctor and I do not play one on TV so if you need any help or have questions about what this staging means, ask your doctors and expect them to say it might not apply to you as you were staged before the change.
Thanks!! This is what I do in the time between...
So I do not know if I will post this or not - I just am in a bit of an existential crisis, NBD.
I have spent the last decade of my life being a MOM capital letters needed. I did not have any help and I had to keep pretending I did not want to do anything other than be a mom because I felt I HAD to do it. My golden girls kept telling me to stop and to slow down but did I listen NOOO (my-golden-girls.html).
My husband, bless his heart, has struggled with issues (no nothing as cool as addiction <sarcasm>, just garden variety cray cray) and I was the person in charge of everything at home and the children and even taking care of him, too. We went out to lunch recently and once he removed the sharp knives from the table, he told me that he does not want me to work full time because he is not "ready". My mom, who I have written about here a-tale-of-two-novembers.html is often pressuring me to "think of the children" when she, you know, kind of didn't. And to round out the trifecta, my mother in law who is also kind of "anti-working full time" for me.
I get it, it is coming from love and they partly do not want to see me get sick again and also partly know I do a lot for my kids, the house, my husband and whoever else in my family I wind up helping as I am kind of a surrogate mom for everyone in my life... though I am trying to scale that back BIG TIME taking-back-control.html.
I recently had a job interview (one of like a handful I have been called for despite looking hard for a job since September 2017 but like that is a post for another day worth of bitching...) and I was very excited about it. Now for other reasons, I do not think this job is going to work out but still it was a great fantasy to think about having the support, the infrastructure to go back to being "executive" and having the budget to live on and so on and so forth. BIG BUBBLE POPPED though re no support...
So here I stand, in New York City today, Valentine's Day, because I needed a shot in the arse (my Lupron shot to keep my ovaries off) and I am now in an office that I can use for the day on Wall Street, my old haunting grounds - where I worked when I was young and free and focused and driven and wanted to be the CEO of a major company. That seems like another version of Lisa long gone...
This me, (hi!) is very much alive and in flux and also in this weird world of "in between" I believe I am cured but I have no proof of it - it is just something I believe in my heart until I am told otherwise (God willing never). Let's be real, anything can happen over the next 2, 5, 10 or even 20 years but I will not let this bitch of breast cancer fuck me up anymore than it has. I have scars mentally, physically, emotionally but I am ready to bounce them and to keep living to keep trying to do more.... but I am still confused over what that means.
I do know my budget is in shambles and real talk, we are broker than broke. BUT also another real talk confession, we have been this way since I stopped working full time in New York City in 2009. What makes it worse now is that, quite frankly, I do not want to have ANY stress in my life and finances, particularly when they are broken, are stressful.
I also see these women owning it, walking around in their matching bags and shoes and I lust after it, I really do. I wish I could be those women - I am sure of them many are moms, some are also the 1 in 8 who have dealt with breast cancer, but I do not know if that is where I need to be, either.
I am someplace in between (pun intended), I want to assert myself, be kick ass again, make the dollar bills BUT at what cost - what am I willing to give up? My kids just got used to the fact that I won't die (they have no other option but to think this way, too) do I want to uproot them further by going to a full time job and not seeing them except on weekends? I KNOW other people do it and they are amazing and making big and huge trade offs daily (I remember, I did it for 2 years after my daughter was born) but for me particularly, I do not want stress in my life - so which is the most stress? Having to scrimp and save to pay bills or to have the finances on point and instead miss your kids?
I know women can have it all and they can balance but I do not know how to do it or if I want to do it... It is a choice, always a choice. I did not choose to get cancer but I can now choose how my life post cancer will be... Now can you tell me what that should be? Thanks! :) XOXO Li
I keep writing this blog post and deleting it and then redoing it. There are things that I guess are better off left unsaid but sometimes in not saying the things, it eats away at you or at me - it eats away at me so I had to write it, feelings be damned.
As this year 2017 draws to a close, I have to believe that the comeback will be bigger than the setback. What do I mean by this? Have you ever met people who have been through the wringer? Like widowed with 3 young kids and needed to make it and turned around and got themselves through school ALONE and became a powerhouse attorney type of comeback?
I know some people who have done these types of things and I just want them all to write a book on how the hell they did it. As I sit here, post breast cancer plot twist having lost my job and trying to work on my own comeback, I want to have some guidance, some roadmap so to speak of how to do this.
I am standing and kicking butt and taking names, applying to jobs, managing my family life with a renewed focus on ME, my husband and my kids. I had been pulled in many different directions lately stemming from the needs of other family members and I had to stand up and say, “NO. Enough. It is now time to do what I need to do for me.”
In my life, I have been the caregiver for many, many people. I have been the person who keeps it all together. Who makes sure everyone feels welcome and well and, well, I am DONE. I am writing this more for me than anyone else so if you are confused already, sorry. This is a note to me to remember that I matter, that my health, well-being, sanity and time are all precious and important. That I am a good person who cannot get lost in being a people please-r. I have 2 children not 10.
I promise to keep putting me first - to stop trying to be the superwoman I have been acting like again. It is so hard to let go of bad habits. It is not my responsibility to care for everyone. I have to be focused on my small family, our home, our life and let the rest go.
This does not make me a bad person - it makes me ME.
My New Year’s Resolutions are unique this year - I did not make any last year except, “Survive” and this year, I want the same thing but with a bit more.
1- Survive - keep on keeping on in my training to be a survivor. Keep exercising, eating right, keeping myself positive and on track.
2- Letting go- know that I cannot hold on to the pain, the hurt or the betrayal but instead need to stay light, lighter than air to do what I need to do.
3- Work - find my next step, my perfect job/income generating plan to make my life work to be able to stop having so much free time but to balance it with my kids and family.
4-Health - See, survive is for me, health is for the other members of my family. Remove all sugar, get us all on a work out routine, stop my husband from smoking and other destructive habits (sugar, no exercise, etc).
What do you want to do for the upcoming year? What did you find were things you had to let go to survive? What do you know about your comeback? What is your comeback?
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