12/16/2016 After my Mastectomy & Lymph Node Extraction
I am a big believer in education. It is partly why I taught college even with the 6 figure salary at my last full time job. Even while pregnant and swollen, I still commuted from midtown office to downtown classroom larger than life to teach.
It is why when I decided to get back to work, I focused on being an educator - especially in college, wrongfully eventually thinking that teaching is teaching is teaching (spoiler alert: it is not). There are differences, some nuanced, some grand. The difference from undergrad student vs the graduate student - big difference, but not surmountable. Online teaching vs in person - ah pros and cons to both. Then, the K-12 life - oh, the dreaded K-12 classroom <insert shudder> with its "the student is always right" mantra and no room for any error - to be a teacher today in K-12 particularly, you must be always right, always calm, never emotional and able to withstand the attacks of parents, media, etc.
Until, of course, you are in the break-room - oh my goodness, the THINGS I have heard in the break-room from teachers, OMG, you would collectively all home-school your children (well, just from the places I had been in the teachers’ rooms at...).
Anyway, I digress … I was the first in my immediate family to receive a Bachelor’s degree and the first in my family to get a Master’s degree. I even began a doctoral program when my daughter was 1 - I do not know what I was thinking, either. After a year and a half, I withdrew and focused on my growing family.
But I never lost my love of learning, my passion for reading and just being well informed about whatever was going on in the world. My husband complains that I know everything but without irony - he is serious. There is no news he can tell me that I did not already know of in some way, shape or form.
I researched everything. When I got weird ailments (like the time my lip blew up to the point that it appeared I did just one restylane injection and balked at the second) or when I was diagnosed as being allergic to “corn” - do you know how much food has CORN in it - it is unfathomable - well, I researched.
When I was diagnosed with cancer, though, my love or interest in learning STOPPED dead. I no longer wanted to research something - I did not want to know what was going on or what could go on. My information stream was now limited to my guru, my contact between both worlds, the only person I knew in real life who had once had cancer and now did not. She kept me calm when I stumbled upon a Facebook post commemorating the life of someone who had died from breast cancer. She supported me when I disabled my Facebook account to avoid finding that fact hitting me again that death was an option.
At that point, though, I was not sharing my story and thus my education was limited. I did not want an education. It was bad enough I was learning words like, “staging”, “cancer cells”, “lymph nodes”, etc. I had no interest in knowing more. I was good at accepting chemotherapy at face value and just saying, crazily or bravely, however you want to consider it, “I am here, start it now if you can!” as a response to my oncologist who seemed to be imploring me to accept the chemo…
When you google my oncologist’s name, you find a blog kept by the now family of someone who was diagnosed too late - or who had already been Stage 4 from the get go (stage 4 “de novo” it is called). I do not know which it was and at the time, I knew even less - I just knew her posts went from talking about appointments to her family’s service for her as she had died. And then I did not understand how but nor did I ask. I knew with my first visit to my oncologist that I would either be cured or if it spread I would be treated but not cured. I did not ask anything.
Slowly, I started to share my story, to go on Twitter and Instagram, to cobble together my tribe. My first real education in “what this shit means” was with the formidable Jo Taylor of https://www.abcdbreastcancersupport.org/. She created an infographic that talks about where breast cancer might spread and what to look out for regarding symptoms. This was eyeopening, along with the understanding that these symptoms had to last at least 2 weeks in mild annoyance level but if incapacitating should be brought to your doctor's attention immediately (in my words or understanding of the whole what to do if you have pains)...
I also found others, people who shared and I learned from and people I shared and they learned from me but through it all, I continue to learn and I continue to think in my mind that I am cured and that no matter what I will not worry because I cannot control it so why should I torture myself … the old me, that would have never been accepted, I would have tortured myself to death..
All we who have had cancer can do is just focus on the moment - we know the line between health and sick is thinner than the line between love and hate. We know that each day is not a given that the little things are just that, little things. We live scan to scan, mammo to mammo, appointment to appointment trying to make sense of the new world order in which our doctors can make one face, one shake of the head and we can be on the floor and destroyed. Or they can look at us and smile and we can live to die another day…
This is what we do in the time between… we wait, we hope, we pray (if we pray) or we just focus on what we can control (not much) and try to make it through to the 1 year, the 2 year, the 5 year, the 20 year … the natural progression of what we think our lives should go to - maybe 75, 80 for me - that is the goal. To die of anything OTHER than cancer. Because Fuck cancer.
This is what I do in the time between...
At my last "follow up" on April 9, 2018
I do not know what I was waiting for - I never do. I know money is a big issue for me - duh, I share about it alot and without my mother in law’s help, we would have no vacations and probably no house - more on what I feel about that (besides immensely thankful) coming in a future post.
Anyway, when I first was measured for a mastectomy bra in January 2017, I was surprised at how much it looked like a 1950’s lingerie contraption. It was a big bra - lots of thickness to the bands and it was beige and with some lace, to show what I do not know - maybe the cover of the big prosthetic? That is another thing, the prosthetic was a size “9” which I guess means instead of a breast, I had a foot (my shoe size is a 9).
I was religious about wearing the prosthetic and the bra everywhere EXCEPT to chemo. I mean if I was gonna get pumped full of chemicals and toxins and poison, I was going to do it comfortably and without a boob. I wore my post surgical compression bra from Sloan to those appointments and rocked the half flat look - but would not even consider doing that elsewhere.
By the time I lost my job and the summer came, I was like why am I doing this? By August, on a trip to Disney, I ditched the prosthetic and walked around half flat and I have honestly not looked back.
But I did feel discomfort - my bras were now ALL sports bras which is a different kind of “look” and “feel” and I did miss the whole fastening in front and turning it around to the back of bras…
I had known about AnaOno from when I began to share my story in June 2017 but I was hesitant to do anything. Why? Funds, fit, comfort, confusion, etc. I even met the designer and owner, Dana (one of my girl crushes) and was finally “ready” to order. But, remember, no job = broke so I was waiting until my friend Irena told me about the “insurance” option via AnaOno that handles the whole process for you - and she got 4 new bras for a small dollar investment and I was like, “Hmmm. This I think I can swing.” I filled out the form here and they handle everything. Everything.
Angela, my insurance rep, was an “angel” - she got my doctor’s office to issue a prescription, handled my insurance to get pre-approval and then helped me pick the right size. After all was said and done, it would be $200 for 4 bras, including shipping. That is great, except I did not have $200 and would not expect to have it for a month.
I asked Angela if we could wait a month and she said “no problem” I was so happy and relieved. Then, the end of the month came and I was ready except I only had $100 and not $200. I was worried but called and asked if I could split the order and it was no problem AND despite ordering on Monday, I got the bras in 2 days and was ready to bring them to my vacation with me!!
Trying them on was a dream - the material is so soft it is like a warm hug. Despite only having one boob, it sits well on my frame - I do need to weigh it down with the cotton inserts because I am so against putting in a prosthetic on principle but it works just fine with the two little inserts and the left side just goes without anything except my tit.
I feel that I should not have waited so long so I had to share with all of you to not wait - go for it - this company is top to bottom for breast cancer survivors, patients, previvors, survivors, everything - this is NOT AN AD - this is my honest, thoughts of the best bras ever and here are the pics of me in them to prove it!
Thanks, Dana, for being a kick ass advocate and rockstar! This is what I do in the time between....
Before we go any further, check out Beautifulself.org and consider how you can help them (see image below) - this charitable organization is transformative for cancer survivors - more on that in a few:
Photoshoot - 1940's Femme Fetale More below...
Those pictures up there are part of a transforming experience that I undertook just this week in New Jersey with a charitable organization called Beautiful Self. The two ladies who run this are a powerhouse. Michelle and Jillian were true angels - from when I walked in at 8:30am, I knew I was in for the time of my life.
A friend of mine had told me to sign up to take part in this and when I did I had been warned it would be a 6-8 month wait but something opened up and I was able to grab it and go this week instead of months from now. I am so lucky.
I had posted like twice on Instagram that I love the 1940's. Once in a story and once in a post. As soon as we got started on my hair and makeup, Jillian confided that I would be getting done up like a 1940's pin up model / movie star and I almost burst into tears. Me, I am not a crier but I was about to be hysterical. It was pre-make up so it was okay to weep!
It might sound corny, but the only way I can explain my day on Tuesday April 17 is to say that it introduced me to my pinup queen, dame, tough, fuck cancer persona.
I knew she was in there - I was writing about how tough I was before and about my golden girls and their tough love but here I was rocking it, smoldering before the cameras like this was my JOB. And who knows, after all of the confidence these pictures hit me with, I might push myself to become a covergirl. I half flat, slightly older, pouchy stomach with scoliosis and lots of body hair but LET'S GO! Anything is possible :). Consider this photo gallery up there my head shots and consider me your model for whatever - mastectomy clothes, underwear, bathing suits, fashion... (as you can tell, I am still on a high).
Something about the way I look in these pictures shows me who I really am.
Something about those 3 pictures captures my soul - something about who I am and what I am.
I know I am a survivor, a "fighter" - I also know I am lucky and hopeful that the conventional treatments PLUS clinical trial PLUS nutrition PLUS exercise PLUS weight loss PLUS "no stress" etc etc will keep working and keep me healthy.
I am a mom and a share-r at times, an oversharer. I walk around trying to think about others while also thinking about myself. More to come on how I want to do this on a larger scale for other people touched by cancer (hint it has something to do with my
#careeraftercancer Work Readiness for Cancer Survivors initiative.
These photos, though, make me look like a freaking movie star. Hey, why not. "I am ready for my close up Mr DeMille..."
This is what I do in the time between.
So check below to see ME - way out of my comfort zone but then again who of us who have been diagnosed with cancer can even remember what a comfort zone is or where it is?
I have already shared some pictures showing my scar on both my instagram and my blog that are (to me) breathtaking and I guess contemplative and some have said it shows that I am “resigned” or “tough”.
I cherish those descriptors and I love it - because as soon as I heard the words “you have cancer” at 39 years old with a husband who hadn’t been “there” for me, 2 kids aged 6 and 9 that took up my whole life force and energy I really did have to get resigned to it ASAP because there was no “no thank you” option.
It was live and growing and I wanted it OUT in any way possible and did not even consider doing a lumpectomy but asked (or demanded ... those who know me know when I want something, I do not take no for an answer) for the mastectomy.
I have shared this before but when I woke up from surgery, I was so scared - not before surgery at all - but afterwards, I was afraid to look at my body - this new body that would be "half". The breast (yes just the one) I used to feed my daughter, the "pillow" both kids had laid their heads on multiple times per night (lol) the weight and feel of the breast - I knew it was gone, I could see the bandages but I would not look at my body for some time.
Then, once I “healed” I began to wear a prosthetic and avoid the half bloated and bald body in the mirror.
I was ashamed and disgusted by how I looked and the fact that I got sick. At some point, though, I realized that I needed to love this body .... this body that survived childbirth (one natural, one c-section) and 2 D&C’s in between as well as cancer and all of its requirements like mastectomy, lymph node removal, 8 rounds of chemo, 33 rounds of radiations, gaining 50-80 pounds, losing the weight, walking my 40 miles per week, etc etc...So I do - I love my body and these special photos by #behindthescars taken by the amazing photographer Sophie Mayanne tell that story.
I look at these 20 pictures and I see a beautiful dare I say “sexy” confident woman who is not half but whole and I share it for you, those of you who find yourselves the 1 in 8 and fear looking in the mirror now that you feel half - to know that someday you will know that you are whole too.
PS: I do feel a bit funny posting these as a 41 (to be 42, God willing) mom of 2 but I do think it’s important to share that breast cancer is not a pretty pink disease but you can still feel pretty and beautiful after being mutilated, poisoned and burnt :).
I launched my first free webinar today sharing a little bit about how I plan on helping YOU (yes you) get back to whatever it is your "new" normal is - I have been sharing more and more via other websites about what it means to pick up the pieces after cancer drops a nuke in your life to figure out how to get "work ready" again and one piece I am really proud of is this one that I wrote for What Next Cancer's Blog which has been shared over 200 times already - help me share it more by clicking here ->
What I love about that post, besides the prose and my turns of phrases (seriously, I was ON FIRE) but also that it has been updated to include a link directly to the webinar I worked on and launched yesterday.
Let me tell you about the webinar filming - I had aspirations to go into NYC and use my available office space to film it and be "uber professional" BUT life got in the way. I have been being kinder to myself and trying to give myself time to recoup and heal in so many more ways than just being restful and mindful of my new abilities and such.
So instead of being all high powered Lisa, I used my kids' playroom to film and my dog made an appearance but everything flowed the way I wanted it to and I was proud of it despite it not being "100% corporate level" because that is not me - I am more laid back and personable and just ME. Like, I can help but I do not want to be "this is my business model" because it is not. It is just me trying to help others in a way I know how by saying, honestly, hey, I do not know how to accomplish this yet EITHER but I do know a lot of stuff about it because I used to be an "expert" and this is what I DO know.
I am embedding the video of the webinar playback below and will also update my main page on #careeraftercancer with it to help people be able to view it without having to login, etc.
This is what I do in the time between...
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.
One of the worst things I have ever had to do is tell my kids I had cancer. As a parent, you just know you cannot show fear. It is funnily enough why I thought I never wanted to have kids - I used to fly to Italy for the weekend and would always look at moms with young children and feel so bad for them because when the plane hit turbulence, they could not show fear without freaking the fuck out of their kids. I could, though, because I was just a party of 1 thanks so much.
In fact, this summer, we flew as a family for the first time (not only was I against flying with children but I also could not afford to do it anyway so win, win…) well we finally went to Disney and thankfully, the plane ride was pretty smooth and no children were frightened on the flight. Though, all things considered, a thing like a bumpy plane ride is not something that can scare my kids. Or me, for that matter.
We faced something much, much scarier with me being diagnosed with cancer and though we present it as though it is over (and I guess it is), I still have that voice way down deep in my head that says, “What if…” but my soul and heart says, “No way!”
Obviously, no one can see the future and breast cancer and any cancer really is something that is never just “done” - no matter what, I carry with me this tiny fear and these big “issues” in terms of medications, ovary suppression, menopause, reduced cognitive abilities, fatigue etc etc but if you read my past blogs and know me at all, I think you know I am leery to ever complain. I just do. I don’t complain.
However, if I am being totally honest, my body and mind and experiences are no longer the same as it once was as it maybe could have been but I am still here, G*@damnit, so I cannot really give a fuck about it.
Instead, I just live. I live differently, but I was always a little different anyway. When I found out about magichour.org, I was intrigued but also not sure if I should sign up. They offer free photoshoots for patients, people in need, etc. I am a mom and my kids are now 10 and 7 so we have had professional photos done in the past. My daughter’s communion 3 years ago was the last time, though, that we did so.
When I look at those and other photos we have, I do not recognize myself in them, like at all.
This new post cancer me has chiseled out and become someone who I guess I used to know - my low high school weight, my cropped out hair, my wariness behind my eyes, my posture, oh and missing a freakin boob all make these old photos dated and all pre-cancer.
So, signing up for this when I was still swollen with excess weight, bald and not really sure how to look at myself in the mirror was not easy but I did it anyway. I thought it would help to have new memories, new professional photos of who mom is - this mom, not the old one who had pros and cons to her but the biggest pro of course was what I never appreciated - my health.
When my application was received, we got word that a local photographer was being contacted to connect with us. That local photographer was Jessica (I wrote about our shoot here).
The photos are amazing full stop. They show a family anew - this family, where the husband and wife actually appreciate and show love to one another and where the children know mom is not a superhero per se but a tough broad and even the loyal pup gets in on the action... See more below ->
PS: Don't tell my dad I am posing half naked on the internet - thanks bye!
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...
I had hands down the time of my life last night. It seems crazy because I already had an awesome life changing experience on Sunday and on Monday afternoon - read more about my topless shenanigans here -> why-no-i-am-not-an-exhibitionist-but.html.
I saw through my Instagram lifeline (seriously, if you have breast cancer or support someone who does and you are NOT on Instagram you need to close this blog RIGHT NOW and sign up for Instagram and start by following me @thetimebetweenis and I will hook you up but good!). If you are on Instagram and need a friend, follow me, too.
Ok, are you back now? Thanks for connecting:).
So, I saw on Instagram that there was a BREASTIE event in my city (of New York) through an amazing woman's Instagram page Paige_Previvor (follow her, too, like NOW, please). What is a "breastie" event - it is indescribable. It is finding your tribe, it is finding people who get you across age, across background, across everything.
I attended last night, at 7pm (almost my bed time, yeah I am a wild woman like that), and it changed my life. Honestly. I now have 35+ new best friends (hi breasties!) and I love them all.
It was held at The Little Beet and it was FREE. I had gotten my tickets and then canceled my attendance because hello, I am unemployed right now and broke and Paige reached out to me to say "Why did you cancel?" and I told her (no shame in my game), "I am broke right now, I do not think I can afford the event." and she said, "COME - all of my events are FREE!" and I was like, wow, ok, I can afford free.
My only investment was my red dress that was $15 from Amazon.com because I was not going to my first Galentines event without wearing red and nothing I own fits me because I have to be a skinny bitch to continue to survive (more on that in a future post).
I tend to appear to others as a very extroverted person but in reality I am a mix of extrovert and introvert. Going to a dinner without knowing anyone in real life has in the past been a challenge for me. I assumed I would be older than most of the attendees and I just did not know if I would feel that I fit in. I often do not fit in - I tend to be too much extroverted or too much introverted in social situations and occasionally make faux pas that would make you cringe and cry for me... Hey, it happens.
I walked in last night with low expectations because that is how I roll. I would like to go back in time and bitch slap myself. I had one of the best nights of my life full stop. It was amazing, welcoming and warm. I did not notice too much that some of the girls were young enough to be born by me (hey, I am turning 42 this year) and were stunning like models and should be on the cover of Vogue because all I noticed was how much we were holding each other up and supporting each other and just overall being awesome.
I have so many photos to share and I just want to say that having the opportunity to meet these women and share my story with them (because a bunch of us got the chance to stand up and talk about "whatever we wanted" and I just spoke from my heart and felt so much love for it that I am punch drunk still today from it) and to make what I think will be true in real life friendships. If you are in the New York area or wherever these events are held in other cities, I urge you to leave your social anxiety and fears to the side and come on out, be embraced, be loved, be fondled (maybe) and let your inner goddess flag fly. You are beautiful, you are whole and any decision you have made about your health, your body, your life is the right true one (thanks Ally).
I met so many amazing women last night, but I want to take a moment to also spotlight someone who is a personal hero to me- the founder of AnaOno, Dana - please check out the work she does for the breast cancer community and the metatastic community she is amazing and I was so blessed to meet her and spend time with her - find out more about what she does for breast cancer patients of all stages for undergarments, bathing suits, and more here --> www.anaono.com/ . If you know someone who needs a mastectomy preventative or otherwise and you want to help support them, buy them this - www.anaono.com/products/miena-robe-with-drain-belt. I had just written about how hard it was for me to miss the AnaOno fashion show as so many of my inspirational women that I follow and learn from and then boom, Dana was at this event and I got to meet her anyway!
I could write books about all of the women I met and fell in love with - so fitting it was Galentine's Day. Paige, her mom, Ally, Dana, Tish, and MORE... See photos for more spotlights.
Also, important to note is that for these events, everyone is included - previvors, survivors, BRCA positive, BRCA negative, breast cancer, no breast cancer, cancer, no cancer... well, you get the idea.
This is what I do in the time between...
So I have been diligent and dedicated to doing all that I can to hopefully make my body as inhospitable to cancer as possible. I do know that it does not mean I am in the "clear" and that I am still very close to being that me who had cancer in my body. As fast as time goes, it goes slow, you know?
Last year at this time I had just completed my second of eight chemotherapy treatments. I was lucky in that I was able to "bounce back" and work and avoid infection and basically did all of my chemos on time (except for a 5 day delay to up my platelet count which, at the time, felt like the end of the freaking world but in retrospect was really not a big deal).
I see now as I am super involved with the community of women (and some men) who go through this plot twist that I was super lucky. There are folks who cannot tolerate chemo (like literally their bodies break down and they wind up in the hospital for days) and there are folks who had infections from their surgeries and there are folks who went in for a simple procedure but found out the cancer had spread and a surgery would not be enough to help them...
At the time, of course, I did not know about these other alternate realities as I was so damn busy hiding from my actual reality. Yes, hiding. I did put on my smile and joke and get through the whole soup to nuts of cancer but I did it as though it was a bad dream that I would wake up from ... of course I realize now that it was not a bad dream BUT that it could always be "worse".
Now, I am in "fighting form" down to my high school weight and I deal with people consistently approaching me with that look. That look that says, "Oh, you are dying." And they ask me, "Are you okay? You look really bony." To which I go, "I am fine, thanks. I weigh what I did in high school and no one ever called me bony then so thanks." Then I will hear, "But are you sure you're okay because you are so thin." To which, again, "Thanks - no one ever told me that before as I still have my tummy and my curves (though just one I guess with the other breast gone... but yes I am ok as far as I know."
It never stops really. People just often do not know what to say or do around cancer survivors in training. It happens to me quite a lot and I chose to let it flow off my back now. I take the pitying looks and think about how much instead I pity THEM. They do not know yet that life is for the living. That nothing is worth getting stressed over. That they are beautiful no matter their shape or size. That even if things really suck right now it is nothing compared to dealing with a life threatening illness for themselves of their loved ones (God forbid). They do not have people who love them unconditionally and who they can IG chat with or call at 2am to share the new world, these new words and experiences we know and go through as cancer soon to be survivors.
I want to take a minute and take my hat off to the women I follow, who I have come to know and love, who are trying to do all that they can to take back their lives from this beast called cancer. I was lucky to have had my children before I was diagnosed with cancer. The type of breast cancer I had is one that makes any future children impossible, which at times, even though I am "older" at 41 is something that makes me think about what my 3rd child might have been like if I had been able to have another. I know I probably would not have had another but I had the choice before. Now, I do not.
My body has been in menopause for a year this month. I take a shot to suppress my ovaries every 3 months and I take a daily hormone inhibitor pill. Still, if I am you know with my husband, I have to use another form of protection JUST IN CASE. As my husband looked at me and I fell pregnant in the past (though struggled with some miscarriages), I have to be very careful as I do not want to be in the position where I fall pregnant and it's my life or theirs.
I follow women who were not lucky enough to have had their children already but still want to start a family. I think they are true heroes. It is not easy to plan and grow your family under normal circumstances and to do it after cancer (or the women who were diagnosed during pregnancy) WOW I want to say God bless and good luck to all of you who are out there building your families for the first or third time behind this wall of "cancer patient".
I spent my son's pregnancy worried and stressed after my miscarriages only for fear he would not make it but to worry also about your OWN health and if you can do it without waking the beast is even scarier. Of course, not all breast cancer is the same. Not all people have hormone positive breast cancer, as I do/did. My cancer was fed from ER/PR (estrogen and progesterine).
So this post is to all the soon to be mama's out there who know what it is like to be bald, to lose a boob, to lose their sense of constancy in this life - may your have tons of baby dust, be fertile and have uneventful pregnancies. May you all hear from your daughter as I did recently from mine that, "MOM, the world does not revolve around you and your ONE BOOB!" -- I mean, I had no idea of that until she told me. May you all hear your son say to you, "Mom, you are boring. Dad is more fun." (Yes, it is true but I am also an adult and my husband is a large child - in the best of ways, I love him dearly but he is just a big kid...)
So here is to us - the parents who know what battle scars look like, who know when to get stressed and when to just let it go. We have been to hell and back and we have no clue that once we have teenagers, it is ALL OVER. Can't wait to get there together!
This is what I do in the time between....
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