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...
Just an update on my initiative to send out *free* copies of the children's book I wrote for my kids and I to process the whole cancer plot twist that hit me and everyone who loves me.
I say this a lot but cancer does not just hit the patient - it hits the family, the friends, the caregiver (or the person who all of a sudden finds themselves a caregiver like what happened to my husband) . For my kids, they had a tough experience seeing me who did everything for them not be able to do it anymore.
We had an uneasy truce where I had to table a lot of stuff during my treatment. I could not help myself so I definitely could not help them. I could give them the speech that "I am ok." but they aren't dumb and they could see that I was NOT ok.
After I finished all of my treatment, I saw my daughter particularly still struggle as my son just would say everything he felt including the fear that I would die when my daughter did not say anything but instead kept it all inside. My son, though, too was still processing everything. I sat down with them and started writing what would become my children's book "I'm Strong, You're Strong, Everyone is Strong...What We Learned When Mama Got Breast Cancer". I taught myself how to create a children's book layout originally just for them. It was not easy - it took me days and days to figure out how to lay it out and how to find pictures for it and how to self publish it - and I am a published author already and know how to write and publish but this was a whole new ballgame.
Once I published and ordered a few copies, my kids loved reading it and it made me think how it could help other older children also deal with this plot twist of having their mom get cancer.
I have sent away 18 copies of the book, for free, and some have gone as far as Australia, England, New Hampshire, Canada, New York and more. I definitely do not know how much I can afford to print and send but I am working on filing to be a non profit so maybe I can get a grant to continue.
Whenever I see someone post about their kids and how they are managing the fact that mom has cancer, I offer the book and even created a page to collect information to those who want a copy here.
Some of the feedback I have gotten already tells me the book was helpful such as:
This is what I do in the time between...
I want to focus my upcoming #careeraftercancer seminar on the following 3 conversation points (and please read this post to the end for a special request...):
When I think of my “plot twist” of cancer and the different ways it impacted my family, my health, my brain and then way at the bottom of the list is how it impacted me professionally. For some of us though, that professional impact rates higher - I am lucky enough to have made my budget work despite getting laid off from my job the day after my last chemotherapy treatment.
It was in being laid off for the next school year that I finally realized that to this place, I was just a number. I was someone who could easily be replaced and if I were to have (God forbid) dropped dead, the same thing would have happened, obviously. However, seeing it done though I was still alive and kicking and so looking forward to kind of vindicating my name and being my kick ass self the following school year, I finally collapsed in upon myself - all of my bravado, my smiles, my energy that I pulled from goodness knows where to work full time during chemo was usurped, gone and I had to go sick to recover.
Having the time to rest and recover was paramount and I am lucky that I had insurance through my husband and that I could “afford” to be home (I put “afford” in quotes because it is tough and our budget does not have much room for anything) but I digress.
Chemotherapy and just you know, cancer, did a number on my professional abilities and it took until recently for me to even feel as though I could “present” on something. Ok, you guys, I am a presenter - it is kind of what I do and who I am - I began talking in front of strange large groups in college (speech and debate team captain, for the win) - well, actually, I began talking in the womb. My younger brother is only 23 months younger than me and he did not speak until he was about 4-5 years old at which point, we were taking him to specialists and such and when he finally began to talk, everyone wanted to know why it took him so long and he used to say, “I didn’t have to talk - my sister spoke FOR me.”
Well, anyway, after speaking in college, I then became an adjunct professor in 2003 which meant that I could get up and say anything in front of anyone. Just to complete the trifecta, I then became a small business owner where presenting my skills and talents and abilities became even MORE of a thing.
Now, I feel “readier” - like, I still am not 100% “with it” the way I used to be - I can feel that and I also know that I must be kinder to myself and assume that along with the new normal of thinking every fucking headache is cancer that I also must recognize that this is where I am. Even still, though, as “diminished” as I personally feel my capacity is, I can bring something to the table in the form of help to those who do not have the years of experience I do and are feeling lost and unsure of what to do with their careers.
It is a privilege to even think in terms of career though and I know it - many of our sisters and brothers who get cancer cannot spend time looking for the job for them or even risking taking time off of the jobs that they do have as there is no safety net for most people. However, I do think this type of webinar and training could be helpful for anyone - even those who do not have any choice in the matter because at the end of the day, not only do our bodies fail us but oftentimes our bosses, colleagues also fail us and we all need a Plan B.
Would you be interested in taking part in my pilot webinar? I plan on doing one on my own to see how it goes then doing one for others as a test to get feedback and to see if it is considered ”launch ready”. Email me at firstname.lastname@example.org to sign up for the pilot / test one! Thank!
So I wrote about how I am not an exhibitionist already here why-no-i-am-not-an-exhibitionist-but.html but now I know you won’t believe me as I had the honor of meeting London based photographer Sophie Mayanne who is famed for her project “Behind the Scars”. She has photographed someone I consider my girl crush, Deborah James (or Bowel Babe on Instagram who seriously I cannot get enough of her Instagram stories and photos you must follow her immediately if you do not already and also follow Sophie, too).
Well, it was through Deborah and on Instagram that I first noticed Sophie and her work. She tastefully captures folks with various scars, some from cancer, some from burns, some from surgeries, some from self cutting - she is a master at getting to the essence of a person and telling their story to a large audience and really embracing the idea of loving the skin you are in.
For me, this is huge. I really am lucky to have not had body issues ever in my life - aside from when I was a teenager and hated myself but all of the other girls I knew did, too so it seemed “normal”. I thought I was heavy and really just stewed about it for a bit in grammar and early high school but then didn’t give a f$&k anymore and still ate my donuts and junk food but still maintained my 135 pound weight.
I slowly crept up which I talk about here the-weight-of-a-breast.html but I did not register it because my clothing size was the same. Despite pregnancies which led to stretch marks (my daughter - I was over 200+ pounds with her and everyone thought I had twins or triplets but no, it was just her) and then with my son's pregnancy during which I did not gain much weight but instead got another mark on my body. He would not flip so his head was by my heart the entire pregnancy (fun, NOT). He was a c section birth, which resulted in my first real scar across my pubic bone line below my underwear. This scar looked like a smile and just began to fade within the last few years.
For years after his birth, that scar hurt and bothered me physically - like it hurt. I would put vitamin e on it, when I remembered, but it just was not that big of a deal to me and it was really hidden. Then, a few years later, I had a cyst growing under my skin that needed to be removed from my right hip bone. At my follow up visit, the doctor offered a cream that would be really expensive because insurance did not cover it but would remove the scar and I remember telling him, “I am not a bikini model, I do not think this scar matters.”
He was taken aback; I am working on a post about my weird sense of humor soon. Fast forward just a few years from that minor cyst removal to my breast cancer plot twist. I knew right away in my heart that a mastectomy would be needed. I do not know why I knew this - I mean I could not feel the lump and there was some confusion over how large my tumor was and all that but I just knew it would need to be radical. I did not know how radical until I woke up from surgery and learned the tumor was 5.6 cm and 5/25 lymph nodes were positive for cancer. My surgeon knew I wanted to stay flat (I already wrote about that experience here being-flat-fabulous-or-half-flat-and-half-fabulous.html). My surgeon did a great job of keeping the skin flat and just the line of the scar across my chest. I still had issues looking at my naked body at first. I ballooned during chemotherapy and radiation and that did not help my body image. Oh and I was bald for that all, too.
Then, my hair started to grow back and I learned how important it was for me to get fit (integrative medicine) and started to do all I could to melt the weight off (by sweating and cursing but whatevs) and then I started to not mind looking in the mirror. I began to leave my prosthetic in the closet and embracing my body.
That all being said, I was not sure what that meant to anyone ELSE until I started following Sophie and seeing her Behind the Scars photos. I realized that there are many women who have had this surgery to you know save their lives and that some of them are miserable or feel unsexy or weird and I do not feel that way at all. I feel like, this is just me now.
When Sophie mentioned on Instagram that she was traveling to NYC and looking for models, I signed up immediately. She was so amazing she even accommodated my practically last minute change so I could still see my daughter’s basketball playoff game! Meeting her and posing for her was empowering still because I do believe it will help others to see me smiling and happy despite my scars or maybe because of my scars - like the saying goes my scars just prove I was stronger than what tried to kill me.
After that photo shoot, my husband and I had a date night in New York City in Little Italy. It was lovely and a great night out but doing all of that last weekend meant this weekend was all about SELF CARE.
How do you try to help others deal with their new reality? Do you love your body?
I feel sometimes like this blog is focused on the same topics over and over again - not in a bad way just in a way that I do think at times I can be repetitive. The topics I share on are so important and in a way helping other women who are also the 1 in 8 so I am committed to continue sharing.
I am someone who is tenacious and I do not give up easily, if at all. I have fought for many things in my life before I was told “you have cancer” so it was not really that big of a deal to focus and get things done in a way that was like “befitting” my fuck it all attitude.
You see, I am irreverent and funny and sometimes just weird but one thing I am not is overly emotional. I am kind of an ice princess and keep my feelings locked away deep down. Why do I do this? I do not know. It is just the way I am.
Maybe because I have seen some shit. Nothing as bad as maybe others have seen but still, I was an adult way before I was 18. I was, I think, born an adult. So I just forced my way through cancer the way I forced myself through some other life experiences. With my eyes open and cringing all the way while keeping it all close to my chest.
Then, I started sharing my story and a lot of things changed for me. I became more open to my emotions, more involved with my story and my authentic self. I am someone who always has tried to help others in ways big and small and now I find myself wanting to help people in even bigger ways.
One of my biggest flaws (and trust, I have a bunch) is that I want to do EVERYTHING at once. I want to rock out my ideas into full blown execution mode right away and as someone who spent 10+ years as a project manager planning and executing on multi million dollar projects and who is licensed in project management (seriously, there is such a thing - it is called the PMP - Project Management Professional and I have been one since 2004!) I should know better that things like this, initiatives, launch and promotion etc do not happen overnight. So why then am I all over myself to get these ideas and stuff out there like yesterday.
I know I can help people and I know how to do it and why I am doing it but I need to lay off myself on the insane timeline I have in my head. My focus is on rolling out content specifically for our cancer survivor (and thriver) community for building their careers after cancer. This is my big pitch to fulfilling a need that I do not think is quite met yet even with the various resources already in existence. Oh and I will be offering this training for FREE.
Here is why I think I should do this:
1- My experience is more specific in that I have been a career expert, having written books on being entrepreneurial in your job search, career readiness and having provided training, seminars and helping individual clients that the next step in their careers. I have another blog all about careers (check it out at thenextstep1234.com/blog). Oh and it is more specific also because I have been trying to get back into a career post cancer and it is all so recent.
2- I have the platform and technical know how to share my message beyond the written word - I mean, the books I have are all helpful but not really specific around our issues of having new bodies, new hair, new perspectives and needs post cancer. I know how to present and how to teach having been an educator since 2003 - I can break down lessons into easy pieces and launch training via the web using video that feels like one on one help.
3-I can also provide one on one help to really work through the issues of confidence, preparedness and career planning that are so unique to our needs.
That #3 is so important - those topics of confidence, preparedness and career planning are the subtopics of my first webinar - I have created the slides already!
Next, I need to record a test run to see if I really know what I want to say. DO not laugh but I had to re-read the books I wrote because I feel like I am so far removed from what I wrote (even though it was just early 2016 that I wrote and published the books- a lot has happened since then - mainly chemo).
So I am just plugging along and thinking and trying to be kind to myself and my new priorities - I want to be able to still have my “me” time - exercising, resting and recovering while also finding work and building out this outreach capability utilizing my skills and talents to help us all get our career after cancer game on point.
What do you think? For more info, check out my page on this initiative here -> Work Readiness for Cancer Survivors.
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