So here I am, a year and 9 months post diagnosis and still writing and talking about what it means to be diagnosed with cancer...
Some of you might kindly wonder why I’m still writing and talking about these things now and not just putting it behind me and moving on...
Some of you might rudely think I’m just stuck and need to get over myself and come to think of it you’re sick of seeing my body out there as an example of living after cancer...
Whatever it is you think I learned the hard way not to give a good dang about it. No offense please.
The idea is that God gave me the ability to write, to tell my story, to use my voice and shout it out and no matter what I don’t feel the time has come for me to sit down and shut up already.
Would it be easier for my kids if I shut up and stopped sharing? Well, since they see me everyday markedly different than I was before, no I don’t think so. No matter what even if I had reconstructed my right breast I would still look different and feel different too - my kids are used to popping (and I mistyped that at first as pooping lol that’s true too) in on me all the time despite locking doors and being private they can still and have still at times found me mid clothing change or in a wardrobe mishap (it doesn’t just happen to celebrities check out my pics from my luau we hosted and you can peep my scar instead of a boob).
I’m not ashamed of my scars or my body (anymore). I love myself from head to toe and I know there are many women out there and men too who have or haven’t been hit with the cancer stick and don’t appreciate or love themselves. It’s an epidemic and it’s also something that can’t be helped I guess.
You see there are things I wish you knew about yourself that you just probably can’t know unless you get hit with the cancer stick and trust me I will never thank cancer for nothing but I did learn some stuff and as an educator since, well, birth, learning is my favorite thing to do -
So here are some things I wish you knew:
1- Your body is your friend - love yourself, appreciate your body for not failing you, for being strong and carrying you through your days and nights as you work, love and live.
2- Don’t pity me because I got sick - but DO understand how quick the line between health and sickly can be crossed and just remember to always know what you need to be well and that no matter what there isn’t a guarantee you’ll never get sick.
3- Don’t sweat the small stuff - and it's all small! Seriously, I see you all worried about what someone thinks of you or something equally small and inconsequential from my seat in my Chemo chair history and all I can say is that you are wasting your time, wasting your health on something that ultimately doesn’t matter. The only things that matter to me are A) am I helping others? and B) am I a good mom/wife/friend etc?
We all, deep down, crave a meaningful life with relationships and love but what we do is posture around like that doesn’t matter and fret about every little thing (I know I did). And yes it’s in that order because I do believe I was a great mom always though I wasn’t a good wife or friend but that’s ok I learned the hard way how important that is - helping others is really in my opinion the currency of life...
4- Know your worth and don’t squander your time, attention and health on stuff that doesn’t matter in the long run. Find something you enjoy doing no matter how small no matter how silly it seems and do it - try not to worry about bills they will always be there but do try to find something that will fulfill you.
5- Do not stress - stress is the absolute worst thing for your health your body and everything around you - I used to stress and worry about everything then I got stage 3 cancer and now when I should, you know, be worried I realize the futility of worry -
it did nothing to keep me well to get me well or anything and that brings me to my last lesson today...
6 - Don’t ever think “it can’t be me” -- it can be you - risk analysis and or thinking in terms of never are a big way to lead to disaster - I thought it would never be me but I did my screening mammograms anyway - imagine if I didn’t - I would probably be dead.
Every day is a gift live in the moment and know who has your back and always keep them close.
This is what I do in the time between.
I 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....
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 :).
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!
So yesterday was The Big Squeeze time-for-the-big-squeeze.html and those of you who follow me on insta or twitter (what are you waiting for if you don't @thetimebetweenis and @timebetweenis, respectively) know I was given the "Negative Mammogram" (or cancer free news) for my left breast! YEAH!
I did not realize HOW freaked out I was about this damn test until the day before (as I posted about in the blog post about it on 12/20 to try to manage the emotions). However, in retrospect, I do realize I had been freaked out about this appointment for at least 2 weeks, if not more. The stress came out in other ways as I was in total denial about it. I mean, this is the new me, I practice gratitude, nothing bothers me, I am tough as shit and all that malarkey. OMG this cannot be. I cannot hide how I feel from myself so in thinking about how I shared about the other feelings of PTSD I experienced with the other testing I decided to do this quarter (because I am stupid - seriously, read this -> all-about-the-ptsd-post-breast-cancer.html) I am going to lay out my plan for how to manage these appointments in the future to help me overcome my insanity.
Some of the things I noticed before the big appointment...
Before the big day on 12/21, I had been obsessively "hiding" in my phone and Kindle to the point that my eyes were hurting. I find that after traumatic events or other weird things that have happened to me in the past, I become focused on always "distracting" myself and it is never a good thing. I love to read but to be reading until my eyes hurt is not a normal thing. In fact, it was hard for me to read books honestly and that is my favorite thing ever so I was just constantly starting and restarting books and not really reading.
Also, my sleep pattern was disrupted and although in all honesty I do find it harder to fall asleep post cancer treatment (this whole life after treatment thing deserves it's own post - note to self), I can normally sleep at some point. The past two weeks, I had trouble falling to sleep and also felt at a bunch of points that my eyes were just closed but I was awake. I also was apparently snappy and irritable with my husband and my dad. I mean, I often yell at my husband - I love him but we are exact opposites - but apparently, I was really in mega-bitch mode.
There were other subtle things like I found myself uninterested in eating and in preparing food. My appetite was gone and I guess I was just listless and not myself.
What I plan to do about it or why I plan to do anything at all...
Now, I know writing this and following it are going to be two entirely different things and I also know that no matter what, I will experience scanziety and/or fear during testing, and or other weird stuff that my body may decide to do that makes me worry like coughing too long and/or hip pain and/or anything that makes me go "Hmmmmmmmm....is that cancer?" SO as my big fuck you to cancer and the fact that I am at heart a nerd / project management professional (I have a certificate and everything, seriously, from the Project Management Institute and I am putting this bad boy to work right now), here is my "plan" on dealing with the SCANZIETY that happens before a medical appointment.
My Plan to follow whenever I have a big appointment related to CANCER:
1- TALK about my feelings - not just write them in the blog and expect everyone in my life to KNOW what I feel because they must read my blog.
I got this feeling standing in line at Five Below the other day that no one on line behind me would "know" I was a cancer patient - I no longer am bald and wearing a wig that might not "pass" as real hair, I no longer walk around with the pallor and fear of diagnosis permeating off my skin BUT the truth remains that I am still different and just like people do not know it by looking at me, my friends and family will not know how I am feeling if I do not communicate. *I found myself also pulling back from communicating with friends and stalk texting them because I did not want to mention my big appointment. When I was sharing stuff online too I was already pushed past my comfort zone because I was like DAMN what happens if I get bad news?
2- Practice self care A LOT before these appointments.
I had stopped doing the things that help me deal with big things -or that help the new me because the old me would have been MUCH MUCH worse than I was prior to this big test - I mean that instead of being oblivious to my inner turmoil as I was, I would have been all over it day and night obsessing over it meanwhile for this experience I was clueless how bad I was until the night before the big test. Self care includes exercise, meditation, girls nights, Yoga, buying new bathing suits (seriously, send help I am obsessed and have brought FOUR bathing suits and guys, it is winter and I am not going on a trip...) - you get the idea.
3-Remember that if I can survive getting diagnosed, losing my breast like bye felicia without any issue, undergoing 8 rounds of chemo, going bald, losing all of my hair, getting "laid off" the day after my last chemotherapy, 34 rounds of radiation AND then deciding to SHARE all of that publicly without flinching and maybe helping others in the process means that I am TRULY TOUGH and that I can handle whatever comes next. I cannot let fear guide me and make these events ruin the time I have in my life, no matter what.
I was hit with a bug, we all were actually snotmonsters, and I kept pushing myself to do more. I could not sit out on things knowing that last year at this time, everything was so hard for my family. Well, I made it harder by not listening to my body and taking a damn seat and skipping MORE stuff. When I look at my camera roll I am shocked at how much I did this month despite not feeling well AT ALL.
5-Trust God or something bigger than YOU.
I know a lot of people do not have religious faith but for me, this is most important, though I am putting it last. I know bad things happen to people all of the time but if I can just believe a little bit more that there is a plan for everything and though I do believe life is like a Choose Your Own Adventure book because we do make our own choices that if I trust in something bigger than me, in my faith, in my religious experiences and my decision to pray, hope and don't worry then maybe, just maybe I will not get so goshdarn "sick" over appointments and such.
What are your go to plans / ideas on how to manage scanziety and all that comes with being a cancer patient?
So as a December girl, my birthday has always been a great way to celebrate the holidays in overdrive. I used to (before kids) decorate my house and tree right after my birthday (or the day of it) - now of course, we decorate after thanksgiving.
I was diagnosed with breast cancer shortly before my birthday last year - actually almost 2 weeks before my birthday to the day. This year, on my actual birthday, I have to admit, I had tons of mixed emotions. I was of course happy and thinking myself blessed and lucky and all that jazz but I also experienced a lot of fear. A lot of dark thoughts about what could happen and if the worse would happen and I would die before seeing my kids grow up or not have the chance to do my renaissance my new me my unveiling of whatever it is my goals in my new life will be to give back, to do more and all that jazz.
I know I have some PTSD and some other lovely issues to work through but I know it takes time. I do all I can to stay focused and positive but sometimes, of course, I falter - hey, I am only human.
Today is the day I can truly celebrate, though, and stay focused on the prize, which is this moment, today, this exact moment of knowing that one year ago today, I had my surgery. My surgeon took out everything - my mastectomy is quite radical I mean hey my tumor was almost 6cm after all. Also, I lost 25 lymph nodes a year ago today of which 5 were positive for cancer.
When the surgeon spoke to my husband he told him emphatically, "I removed all of the cancer. It is all gone." I posted about that on Instagram today (@thetimebetweenis); from that point on my husband has been convinced that I am cured, that I am cancer free. I live my life to try to believe the same, every moment of every day because if I did not, I would not have any peace. I know that this might not be true as it is not true for 1/3 of breast cancer patients who wind up having cancer spread to other parts of their body and become "terminal" at some point...
I also know that some people have local recurrences and all that jazz. I try instead to be positive and not think about those possibilities, but sometimes like the night of my birthday, those thoughts were taking over and winning which sucked.
I did have an awesome night and was able to not cry - because at one point, at dinner, surrounded by my loved ones, I did want to cry. I think the tears were a mix of self pity and fear and I do not like those feelings not one bit. I am thinking about making a post about how pity is one of the worst emotions and why I think so but for now, I will just say that it was a moment of weakness - which everyone can experience at any time though in the old days, I felt this weak all of the time -- now ,though, I truly do (try to) live in the moment.
I am going to share something now that might make you think I am insane - and if that is the case, it is ok, sometimes, I think I am insane, too (lol).
On the night of my birthday, when my peace was rocked, as I was sleeping one of my children called out to me and said, "Mommy, I am scared!" (This happens sometimes as they were impacted by my cancer plot twist and it is the reason why I worked on the children's book told from "their" perspective - see it here - working-through-the-pain-or-what-your-kids-feel-when-mama-gets-sick.html.
Anyway, when they called out, I wanted to say, "I am scared, too." but I did not of course - I told them, "Everything is ok, there is nothing to be scared of..." then, I quickly fell back to sleep but I was not asleep. Instead, I was bathed in a white light that was so strong and so bright and yet I could look at it without having to shield my eyes. I was in a white bright room and in that room were 2 other people - Mary, the Blessed Virgin and Padre Pio. I have written before about my experiences with Padre Pio here padre-pio-me.html.
This experience was more deep, more profound and even if I created it in my head alone (which I do not believe) it was still something that brought me great peace and made me feel that no matter how much I worry, it does not help and that I should just follow my original gut instincts to "pray, hope and don't worry". There was more that happened during this "vision" or "dream" but I cannot put words to it...
I woke up suddenly because I felt something in my hands. When I opened my eyes, I was holding my green scapular in my hands, tight. I will write more about what a "scapular" is at another time because this post already is turning into a book and I have some living to do today! On this day, the day of my "rebirth" there is no bad feeling or fear - there is just this moment, this moment when last year, we heard the magic words, "All of the cancer is gone." I am going to hold on to that and keep it with me so that I can continue to have my peace, no matter what.
What do you do in the time between to help you cope with the fears, the bad stuff, the PTSD? I would love to know! Thanks!
It is true I am more buoyant even with one boob. I spend a lot of time trying to re-condition my brain and my I guess reptilian ways. I used to be the person who would hold a grudge, replay the day and who said what when and what I should have said would keep me up at night.
Now, I am actively trying each and every damn day to just continue to rise above. To not fall for the pettiness, the silliness, the stupidity when I can just enjoy my life every damn day - NO MATTER WHAT.
This is a big thing, this "no matter what". It means when another mom says something I consider 'unkind' to my kid, I have to just let it go. It means when someone is not as nice to me as I think I am to them, I have to just let it go. It means that when family members are acting a fool (collectively), I have to just let it go.
It is harder to do than I am making it sound. It can hurt when someone you think is in your "crew" shows that they are not. It can be hard when a relationship dynamic changes from being girlfriends to being just like "hey" and man when I was younger these are the things that made me crazy.
I know now that not everyone has to like me. I know now that I don't have to like everyone. I also know that I am not here for big vendettas and clearing the air because I want to live above the air. I am in my space, my world where last year the ability to do what I did this weekend (and every weekend since chemotherapy ended just over 7 months ago) seemed like a miracle, a dream, something I would never be able to do again. But yet, I am doing it.
I am kicking ass and taking names in terms of my life, my health and how I want my world to be. I am job hunting, I am focused on being the good for those who are good for me. I am focused on my kids and family but I am totally now down to taking care of ME first and getting away, doing things with the girls, my girls.
As I posted on Instagram (see below), I lived through what remains in most people's bad dreams. I am a monster high doll with scars and things where my breast used to be. I am here to live and enjoy, to work and do what I can with the time I have left as we ALL have only so much time left because no one has lived forever in this world. I am prayful and fun, focused and relaxed. I am me, I am proud and I am the 1 in 8.
This is what I do in the time between...
A tutorial about the different ways to stuff your bra if you opt to not reconstruct after mastectomy oh and also about going flat post breast cancer...
As everyone knows who follows me on social media, I only have one boob. I wrote about my complicated relationship with my breasts here complicated-history-of-boobs-a-treatise-by-a-breast-cancer-patient.html and wrote about my decision to not reconstruct here to-reconstruct-or-not-to-reconstruct-that-is-the-question.html.
I did not reconstruct and I have no interest whatsoever in reconstructing. I walk around mostly with just the one breast but there are some issues. Paramount is the issue of being lopsided. It is uncomfortable to wear a support garment ALL of the time. So without one, the left breast just hangs out uncomfortably while my right side is free. So I continue to put my pressure on my left side, I notice my shoulder curving in on the right side to compensate for the unbalance.
When I was diagnosed and operated on, my main focus was on getting the cancer out of my body. I also refused to google or share my story at that time. There is a lot I could have learned if I had just been able to break free of my own shame and fear. Mainly fear with a dollop of shame.
I think I would have requested a bilateral mastectomy right away. I remember, though, vaguely, it being discussed as having little or no benefit to remove both breasts and that mastectomy does not cure breast cancer and some other tidbits. I was not thinking clearly though so I could be wrong.
I realized shortly after my connection with social media and other women who have experienced the breast cancer plot twist that I want to be flat. I know, it is insane. The same girl who did, "I must, I must, I must increase my bust" wants to be flat.
This December is my one year post op for my original mastectomy and I feel as though I am "healed" enough on the right side to remove the left breast. Funnily enough, my husband is upset about me wanting to remove lefty.
Obviously, it is not his choice but I find it odd that he would be so supportive of me losing righty and not reconstructing it and now have qualms about losing the left one and being totally flat. I can still, if I chose, pretend to have breasts (which is what I did way back when with socks and tissues) but this time with the inserts that are cheap, light and available on Amazon - www.amazon.com/gp/product/B071L816NB/ref=oh_aui_detailpage_o07_s00?ie=UTF8&th=1 (and no that is not an affiliate link - so feel free to buy it and not assume I am promoting it to get anything in return).
I will keep you posted on what happens when I ask for the left one to be removed. I am just hoping it is not going to be because I NEED to remove it - just prophylactically and to have an even body - so that I can dress how I want and be comfortable without being half jiggly.
This is what I do in the time between....
For the 1 in 8 women diagnosed with breast cancer, for the person who is told every 2 minutes that they have breast cancer, here is my video on what a mastectomy was really like and what it is like to only have one breast.
If you want to know more, reach out to me on social media or email. This is what I do in the time between...
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