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...
There comes a time when even the most people pleasers of people pleasers (me , I am their queen, hi nice to meet you) realize it must stop. That giving and giving to people who don’t appreciate it and would only give once to you no matter who they are must be turned down.
It’s hard. Really hard. I learned though that I need to focus on me, my husband and my kids. I need to stay healthy, in fighting form and I can’t do that when I’m bogged down by other stuff.
Some of that other stuff in addition to people pleasing is the run of the mill fear of dying and not keeping my promises.
I promised myself during chemo last year that I would change my ways. That I wouldn’t be a crazy helicopter nah shirt-mom. I wasn’t in the helicopter, I was like in the children’s shirts and not allowing them to be on their own or with others. I promised I would be more focused on what I need in my life. That I would take risks. That I wouldn’t settle for what I thought was being a “good mom” and putting myself last anymore.
And you know, so far, I am doing it little by little. I have learned to let go and let God in ways I never ever thought I could. I am like chill af now as the young kids might say... I do not get ruffled often. I do not panic anymore. I have a routine and a plan for managing most of these types of issues. As someone who always worried about everything I don’t worry anymore. Occasionally I get scared and spooked but I just roll with it by acknowledging the fear letting it sit with me for a few minutes and then dtmf down after the 5 minute mark.
I listen to a hypnosis by Seth Deborah called “victory over cancer” and it’s a great visualization technique to see my body healing or to help my body heal.
I also do mindfulness meditation, a novena every night before bed and exercise or at least walk 10k steps every day.
I eat well and have found that taking 3ml of melantonin helps me sleep like really sleep... like life before kids sleep. I found post surgery, chemo and being put in immediate menopause almost one year ago meant that sleep was now a challenge a real big challenge. I would lay awake for hours, despite being so tired. I wouldn’t dream much. I would wake up too early and not be able to rest again. I was taking 1-2 .5 milligram anxiety pills (have to check the name) from my oncologist every night to try to get sleep. Now, after a half hour of laying down, I am out cold. I get up at like 330 to pee and then boom right back to sleep til 6.
It’s amazing. I was born tired so getting to rest is huge for me.
This weekend, I worked on doing something really new. Both kids slept out and my husband and I took a surprise drive to Atlantic City w place we spent lots of time at before kids. We had a fancy dinner and also met up with an old friend of mine from grammar and high school!
I got home at 2am friends!!! And woke up at 7am because I had to get to my sons basketball game at 9! I am finding it’s ok to balance the different parts of me. I got some good news about some exciting opportunities for me to maybe just maybe be able to use my writing and social media skills as an income generator - more on that soon.
I volunteered to be part of the planning committee for the Making Strides Against Breast Cancer walk for Staten Island and there’s more to that tooo coming soon! And I’m stepping wayyy out of my comfort zone again soon in February a few times - can’t wait to tell you all about that too!! You got to keep reading ;).
I continue to try to exceed expectations on this new normal. I have so many ideas and plans to help others adjust to this “new normal”. I am here and I plan on making the most out of whatever time I have left and I hope it’s a long ass time- what about you?
Today, I did something I have not done for a long time. It is my birthday, so it’s been 365 days since my last one so I guess I do not do that too often… But I went out and had lunch, by myself.
This is something I used to do all of the time, back in the day. I have lived alone in foreign countries, taken 27 hour flights to far flung destinations for work but something I stopped doing abruptly over the last ah 13-15 years is doing things by myself for ME and with ME. It seems weird because I was always a very solitary person who just went off to do my own thing quite often.
Somewhere in becoming “coupled” up for good and having children, I lost this ability to be alone. I was always alone but alone at home and busy or alone at work and busy but now, I am just enjoying my own company and having a good old time spending money I do not have to get some splurge items for this birthday, this birthday that I never doubted I would see - maybe because I am just stupid but I just did not doubt that I would see this birthday in the books and that I will see many, many more - at least past 70, right?
But, the truth is I do not know and as much as I am rah rah and cheerful and positive there are these little nags that sit on my soul - this tiny little doubts that flourish up at the most inopportune times and remind me - remind me that my days might be numbered to an extreme, that there are cells that might remain in me trying to wreck havok and/or cause issues all I can say to that is I AM DOING EVERYTHING I CAN POSSIBLY DO TO NOT HAVE THAT HAPPEN and also, HEY I DO NOT HAVE CONTROL OVER THAT BECAUSE IF I DID, I WOULD NEVER HAVE GOTTEN CANCER IN THE FIRST DAMN PLACE!
Excuse my yelling. Sometimes, there are things that try to take your joy. In the “old” days, I had many, many things that took my joy. Now there is only 1 - it is just the underlying fear of having been sick and the WHAT IF it happens again. So every day, especially on this day, my 41st birthday, I do what I can to exhume it, to get it out and to live my life because it is what it is and it could always be worse.
I got stuff to do, though, and it should be enough to keep me busy and focused. Finding a job, filing for my charitable company The Time Between Is, Inc (done today, for my birthday gift to me - I also got myself tons of earrings, an echo dot, a new bag, new dress and a belt oh and a pair of jeans - today was a treat yoself day!) and just living life. Tomorrow is birthday breakfast with my best friend forever and of course tonight is all about family. We will meet at a restaurant and have a big dinner and a bigger cake. It is time to go big or go home for me - it has been a long time since I had cake / sugar and stuff so Bring, It. On.
How do you celebrate your birthday after breast cancer? What do you do to make sure nothing steals your joy? How do you quiet your fears?
I am focusing each day on practicing gratitude. I am keeping a journal to jot down a few things each day that have made me happy that day. I am doing this at night to go to sleep with happy thoughts.
Each day in my gratitude journal I write that I am healthy and cancer free. Do I know this is true? No, not really. Do I believe this is true, yes and I will unless God forbid I am told otherwise.
I try to think this way every day but some days, it is hard. Some days, I get a headache that lasts too long and I think, "Oh shit." Some days I get back aches and/or other weird pains and think, "Oh shit."
Sometimes, someone stops to ask me about my experiences, someone who is an acquaintance and means well and I tell my story and for a bit afterwards, I think about how I am a G#D-D@mned super hero that I am cured and still standing and kicking ass and all that - then about an hour later, I am thinking, "Damn, that person does not have cancer, never had cancer, and wow I am sick and so unlucky and blah, blah, blah...."
I do my best to just shake it off, though, and continue thinking positively, not because it will cure me but it sure as hell can't kill me.
On another note, I am at goal weight and have stayed there since mid-November the-weight-of-a-breast.html . I weigh what I did in high school people (137 pounds). Way back when I weighed this amount last, I thought I was HUGE and OVERWEIGHT because I was a typical insane teenager (and I quiver with fear thinking about how soon my kids will be teenagers and think these crazy things but I also look forward to it and plan to be here for it and if I complain then, hit me and remind me how I had / have cancer and shouldn't complain lol).
This is my routine/eating style post integrative medicine doctor meeting at Sloan (integrative-medicine-clinical-trials.html) that led me on the 10 day green smoothie challenge that I believe kick started my metabolism and also taught me how much food I need to eat vs how much I "wanted" to eat.
For instance, pre challenge, for breakfast I used to have a full smoothie with kale, spinach, fruits and water AND a yogurt with granola with dark chocolate and now I just have the smoothie. I am full and not at all hungry and cannot believe how much extra I was eating before versus now.
I eat breakfast 13 hours after I had my dinner; this is some kind of intermittent fasting process that is supposedly good for your body.**
After breakfast, I have my green tea - 2 cups of it, usually in a to go container so I can drink it on the road. A few hours later, I have snacks with me ready to go. I have ziploc bags with apples, unsalted nuts, almonds and rice cakes. Yes, rice cakes. Some people think they taste like cardboard but I love them. I use the whole grain sea salt ones. They are delicious.
For lunch, I have salad or a smoothie or a 1/2 of sandwich (meaning, I go to the deli and get a wrap and it is the size of my ARM so I cut it in half and save it for the next day's lunch). Between lunch and dinner, I have more nuts and fruit again. Dinner is whatever my family eats but we are all trying to eat "clean". I also have like 3 days a week oven roasted veggies to snack on throughout the day, too.
During the day, I am also moving and grooving usually doing at least 10k steps a day with 4k of them as a cardio workout.
As part of my de-stress routine, I listen in the morning to my hypnosis app by Seth Deborah called "Victory over cancer" and I meditate as well. I also pray and think about all of the things I am grateful for, as I mentioned in the beginning of this post.
This is how I try to stay sane and focused and grounded. I cannot worry or wonder every day about what is going on inside my body so instead I smile and zen myself into oblivion while job searching, taking care of the house, kids and puppy oh and husband oh and my dad, too. Can't wait to find that job! Oh and of course, updating this blog and sharing my story, in the time between....
**I am not a doctor so please check all of this information out with your medical team before following along with me.**
I truly do not know what the hell I was thinking to "challenge" myself to blog every day this breast cancer awareness month - my first as someone who has/had breast cancer.
Today is the eve of the last day, I guess and tomorrow is Old Hallow's Eve (?) right? So maybe there is some symmetry to this stupid idea of mine.
When I say "stupid" it is with a smile - I love to write but as I am working on this daily blog post, I am also working on my first novel i-am-writing.html and looking for a new job when-god-closes-a-door-he-opens-a-window.html oh and I went away on my own for the first time in over a decade to focus on ME being-a-woman-or-how-a-local-charitable-organization-marys-place-by-the-sea-has-boots-on-the-ground-toes-in-the-sand-helping-women-cancer-patients.html.
I recognize that my words help others - my website unique visitors count shows me that on a daily basis and the folks who do reach out to me solidify that what I am doing "matters" or "helps" the other 1 in 8 women who are facing a diagnosis of breast cancer,
As I write this, 67 people have been on my blog TODAY and 1495 this week. Words have power and sharing my story helps me manage it and deal with it. I will not lie, though - as much as I smile and focus on today, there are fears. Fears that my cancer will come back, fear that it will become terminal (by spreading to other organs or metastasizing). Last night, when I returned from my weekend away at Mary's Place by the Sea, I felt thrumming with emotions. I had uncovered so many things about me and how I feel and what I feel that it was like too much - sensory overload. I had tears coming and part of it was from the fear - the fear that I will die before my time.
I want to tell you it is easy to move past these fears but it is not. However, once you realize that YOU are still HERE you have to shake it off (in the words of the immortal Taylor Swift). I let those fears and tears fall, then I said, "Pray, hope and don't worry!" because that is my mantra, it is what works for me. The truth is, no one knows what the future brings and I say this to myself over and over again. It just hit me hard in the gut, though, that I would have cancer. That I would be in a situation where I was truly, honestly "sick" after really being one of the healthiest people I know.
Why was I so healthy way back when - because I did listen to my body. When I was tired or run down, I stayed home and did not put on my low cut shirts and go out to flirt and party. When I felt icky, I missed a day from work and rested in bed. I was born old - I say this all the time and it's true. Even this weekend with my new friends at Mary's Place by the Sea, at dinner I was like, "Whoa, it's 8:15pm, I got to go to bed!" Everyone made fun of me (in a sweet way but I can take it, I have been teased about this stuff for years!) and I was one of the first (and youngest) ones to get to bed.
I experienced so many emotions this weekend but no fear until I got home - I let it hit me that of the other guests with breast cancer, mine was the most advanced stage AND I was the youngest. Statistically speaking, this is sobering. As 1/3 of breast cancer patients wind up with stage 4, I allowed the fear in to think wow, it would be me in this situation. I pray and hope and not worry about it because if I give in to the fear, then I am already dead, right.
So, I experienced my emotions and then I let them go. I cannot harbor them. I must be who I am - I am the person who smiles and laughs in life's hardships. I am the person who gets up every morning and when my feet hit the ground the Devil goes "Oh shit, she's up! RUN!" I am strong, I am healthy (all things considered) and I will take my cancer and deal with it because that is what I do.
I will love more and be nicer to my husband and I will never forget the lesson that I must make time for me and my life and to be present in it and enjoy the people who are in it who love me (and I love them).
And all things considered, I will focus on the good. The good is that my cancer WAS caught, I was still considered "early stage" and that I can do what I need to do and the rest, is not up to me. It is up to something else - I keep following my doctor's advice and LIVE each day because that is all any of us could do.
But seriously, fuck cancer and fuck 31 day blogging challenges. This is what I do and think in the time between.
Before cancer, when I would go to get my hair done, I would always have one request of the stylist and that was, "Please do not cut my hair too short because then I look like my brothers."
I never appreciated my hair until I lost it all during chemo. I had hair that lived its own life. It did not behave in any way shape or form. It grew out instead of down so I could not grow it past my shoulders. When blown out straight (beaten into submission), it would go to the middle of my back.
I would go through phases of growing it out as long as it could go and then cutting it as short as possible while avoiding looking like my brothers.
I mentioned in a previous post that I opted against and hair saving technique (the cold cap) during chemo because of this hate/hate relationship I had with my hair. Do I regret it? Ah, a little. Now, though, I have this short buzz cut going on and once I have the ummph to get myself organized with my contacts, makeup and sunglasses, I think I could make it work.
For now though, with 4 days left of radiation, my skin burns like the sun and I cannot wear anything other than big t-shirts to help my skin not feel like it is falling off and to try to hide the fact that I only have one boob.
At times, I do forget all of this process the diagnosis, the surgery, the chemotherapy but then I catch sight of myself in the mirror and it's like whoa, who is that. Lately, though, I am starting to recognize this woman in the mirror. I am a fighter, a survivor, someone who did not care about anything except beating cancer. I will continue to be this way long after my crazy hair grows in.
Even though I look like my brothers more than I ever thought possible, I am still a girl. I am still someone who can be considered "beautiful" even though I am heavier than I have been while not pregnant (yeah Taxol and the required steroids will lead to weight gain) and lacking a breast.
I am almost ready to go out and about without a wig. I am almost ready to be brave enough to show people who do not know me that I was fighting something. I am proud of me - the real me, the me without hair to hide behind (especially missed with the zit that is growing on my forehead that needs hiding) and without the curves that I knew so well. Most of my wardrobe has to be redone because my well worn tank tops are too low, too small to handle the new foundation garments that hold the prosthetic boob. Not to mention that cleavage is not existent now on the right side, which makes my old clothes unsuitable for my new life, my new body.
Having experienced pregnancy, I know what it is like to not recognize your body, to not be able to see your feet but I did not know what it would be like to never get something back. After delivery of the child, you get your body back in a way (though it is never really the same as it was before kids, you still have all your parts). With cancer, my body is now modified beyond what I recognize. As someone who grew boobs at 10 years old, I now start my 4th decade with just one boob. I am ready to kick butt as the new Amazon - as someone with the rough and tumble buzz cut and the new clothes needed to wear my armor. I do not need a breast back to feel whole but I could definitely use my hair!
What I think about in the time between...
I spend about 90% of my time convinced I will beat this and be cured - actually if I am being honest, I kind of spend that 90% of my time thinking I already beat this and am cured.
But there is always that tiny bit of doubt - that little bit of fear - if I am not going to be cured or (God forbid) worse.
I do my best to focus on the positives in life - always have and most people who have been with my on this journey either friends, nurses, doctors or radiation techs all comment on my smiling ways and how much I laugh about this process. The loss of the breast, the ultimate decision not to divorce my husband in a few years, the baldness - it has all been something for me to make jokes about to make people laugh even down to the guess what I got for my 40th birthday? (Punchline - cancer!)
I never liked to read the news before because all the tidbits of death and destruction made me anxious but now it has the opposite effect - it forces me to understand that life really is unpredictable and if I spend too much of my time panicking about cancer ending my life then my life is already over.
So I allot just a few minutes every couple of days to think about the "what if..." worst case scenarios but I try to counteract that immediately with my faith, my belief in my doctors and my general all around wonderful family history of health and my own, too - despite this breast cancer issue I have always been healthy as a horse and an early to bed early to rise type of person.
But now I want more than that. I don't want to miss out on things that I used to cower away from either due to anxious thoughts or other silliness - I want to be a real friend again and do social things, I want to stay up late and not always be so dang responsible all the time. I have been responsible forever - always the first one home from the bars or the designated drivers and before that helping care for my brothers and managing my parents divorce etc etc.
Today was an off day, though. I read about Joe Biden's work for cancer and the article mentioned how cancer is so tricky and hides and attacks and all that jazz and it made me feel defeated. I started to think if this is all known about this disease will my body be smart enough to cure itself with the doctors cures and all the other things I will also do once radiation is over?
And then I remembered, this is no way to think. I have to just enjoy my life and forget all about the disease. My oncologist told me at one of my last visits to do just that. She said, "Once your chemo and radiation is over, just forget about this and continue that way unless I tell you otherwise." And I am taking that to heart.
That is what I will do in addition to some other tweaks and changes I am making to diet and exercise once I am totally done with treatments. I have 9 radiations left so that time is coming soon.
What do you do to keep the bad thoughts at bay? Any ideas on diet and exercise to keep the cancer away?
The "secret" of life is just simply not to think too much, not to plan too much and just to enjoy each day.
The stories of those who survived and beat cancer are inspiration; the stories of the other outcome are things that you try to avoid hearing about. It seems part of people's interaction with you knowing you are fighting cancer is to tell you either of someone who beat it (I do not mind hearing those stories) or they want to tell you about someone who lost their battle (I do not want to hear these stories).
I think most people have no clue what it is like to be facing a life threatening illness and the radical treatments to eradicate the disease from your body. I think these people who have never dealt with such a diagnosis cannot be expected to know what to say or do for those who are fighting.
I try to just go day by day and deal with the issues at hand instead of making myself crazy with plans and back up plans for the future. I do not know what tomorrow holds but truly none of us do - we just have to enjoy today.
My goal each day is just to do that - to enjoy the fact that I do not need to go to sleep at 3pm due to chemotherapy, to enjoy the sunburn from my daily radiation treatments and to stay focused on the fact that my body is that of a warrior. My one boob and my hair growing in (slowly but growing nonetheless) is just proof of the war I have fought to stay here to beat this disease and make it never show its face here again.
I am already dreaming of my tattoo that will say, "Cancer picked a fight with the wrong bitch!" but in Italian so it will be more "classy" - it will be more like "Cancro ha scelto un lotto con la donna (troia) sbagliato" - though troia is really a more derogatory term than bitch it is hard to translate "bitch"... it will have to do.
This is what I do during the time between.
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