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...
This video is a long time coming - from when I first stepped foot in the Evelyn Lauder Breast Center, I knew I was where I belonged. My surgeon treated me like a daughter; my oncologist treats me like a sister; I tried to make one of my chemo nurses my sister in law.
Where you are treated can make a huge difference in just everything about your health and your future. I tell my doctors all the time that I do not worry because I expect them to worry for me. And they do. At Sloan, I was treated like LISA - I was me, everyone loved me and they did not need to love me.
I also was treated quickly - from my first appointment to my surgery it was 11 days. And only that long because my damn right breast was dense and hiding the cancer and I asked for a pet scan.
May you never walk in my shoes but if you do become the 1 in 8 diagnosed with Breast Cancer in your lifetime, pick your SLOAN.
My whole world changed on November 29, 2016. I was diagnosed with cancer and had no idea how the hell that had happened. My mom was crying wishing it was her instead of me. My children did not know yet. My husband was in shock. My dad was just absolutely floored and my brothers were on the floor with him.
I had been running a semi-successful business called The Next Step www.thenextstep1234.com and just accepted my first full time teaching gig - if there could be worse timing for cancer, I did not know if it was possible. I mean a diagnosis of cancer always sucks but getting it during your first full time job in several years is less than ideal.
During my testing, surgery, chemotherapy and even some of my radiation, I spent a lot of time "hiding" - I would not leave the house without a head scarf on or a hat - it had to be a wig of some sort only.
I would not allow people to corner me to talk about it because I did not have anything to share (in my opinion). This is rare because I spend a lot of time talking and sharing in general. I have made an income on my thoughts and opinions on all things professional and collegiate and now here I was speechless. Cancer had robbed my voice. I was hiding and I did not know how else to be.
I looked in the mirror and did not recognize myself. I was bald and missing a boob. For some time, I was swollen and disfigured on the right side of my chest. My mastectomy was to the bone of my chest wall - there is no meat to stop the feeling of bone grating pain when my children want to lean their heads on my right chest.
My focus shifted from inwards to outwards seemingly over night but it was a long drawn out silence. I kept a personal journal during the process of diagnosis to surgery to recovery to treatments. Slowly I started keeping my journal on this blog in June and then finally in July, I went public and matched my name and my alter ego at The Next Step to this site.
Search the blog here: