12/16/2016 After my Mastectomy & Lymph Node Extraction
I am a big believer in education. It is partly why I taught college even with the 6 figure salary at my last full time job. Even while pregnant and swollen, I still commuted from midtown office to downtown classroom larger than life to teach.
It is why when I decided to get back to work, I focused on being an educator - especially in college, wrongfully eventually thinking that teaching is teaching is teaching (spoiler alert: it is not). There are differences, some nuanced, some grand. The difference from undergrad student vs the graduate student - big difference, but not surmountable. Online teaching vs in person - ah pros and cons to both. Then, the K-12 life - oh, the dreaded K-12 classroom <insert shudder> with its "the student is always right" mantra and no room for any error - to be a teacher today in K-12 particularly, you must be always right, always calm, never emotional and able to withstand the attacks of parents, media, etc.
Until, of course, you are in the break-room - oh my goodness, the THINGS I have heard in the break-room from teachers, OMG, you would collectively all home-school your children (well, just from the places I had been in the teachers’ rooms at...).
Anyway, I digress … I was the first in my immediate family to receive a Bachelor’s degree and the first in my family to get a Master’s degree. I even began a doctoral program when my daughter was 1 - I do not know what I was thinking, either. After a year and a half, I withdrew and focused on my growing family.
But I never lost my love of learning, my passion for reading and just being well informed about whatever was going on in the world. My husband complains that I know everything but without irony - he is serious. There is no news he can tell me that I did not already know of in some way, shape or form.
I researched everything. When I got weird ailments (like the time my lip blew up to the point that it appeared I did just one restylane injection and balked at the second) or when I was diagnosed as being allergic to “corn” - do you know how much food has CORN in it - it is unfathomable - well, I researched.
When I was diagnosed with cancer, though, my love or interest in learning STOPPED dead. I no longer wanted to research something - I did not want to know what was going on or what could go on. My information stream was now limited to my guru, my contact between both worlds, the only person I knew in real life who had once had cancer and now did not. She kept me calm when I stumbled upon a Facebook post commemorating the life of someone who had died from breast cancer. She supported me when I disabled my Facebook account to avoid finding that fact hitting me again that death was an option.
At that point, though, I was not sharing my story and thus my education was limited. I did not want an education. It was bad enough I was learning words like, “staging”, “cancer cells”, “lymph nodes”, etc. I had no interest in knowing more. I was good at accepting chemotherapy at face value and just saying, crazily or bravely, however you want to consider it, “I am here, start it now if you can!” as a response to my oncologist who seemed to be imploring me to accept the chemo…
When you google my oncologist’s name, you find a blog kept by the now family of someone who was diagnosed too late - or who had already been Stage 4 from the get go (stage 4 “de novo” it is called). I do not know which it was and at the time, I knew even less - I just knew her posts went from talking about appointments to her family’s service for her as she had died. And then I did not understand how but nor did I ask. I knew with my first visit to my oncologist that I would either be cured or if it spread I would be treated but not cured. I did not ask anything.
Slowly, I started to share my story, to go on Twitter and Instagram, to cobble together my tribe. My first real education in “what this shit means” was with the formidable Jo Taylor of https://www.abcdbreastcancersupport.org/. She created an infographic that talks about where breast cancer might spread and what to look out for regarding symptoms. This was eyeopening, along with the understanding that these symptoms had to last at least 2 weeks in mild annoyance level but if incapacitating should be brought to your doctor's attention immediately (in my words or understanding of the whole what to do if you have pains)...
I also found others, people who shared and I learned from and people I shared and they learned from me but through it all, I continue to learn and I continue to think in my mind that I am cured and that no matter what I will not worry because I cannot control it so why should I torture myself … the old me, that would have never been accepted, I would have tortured myself to death..
All we who have had cancer can do is just focus on the moment - we know the line between health and sick is thinner than the line between love and hate. We know that each day is not a given that the little things are just that, little things. We live scan to scan, mammo to mammo, appointment to appointment trying to make sense of the new world order in which our doctors can make one face, one shake of the head and we can be on the floor and destroyed. Or they can look at us and smile and we can live to die another day…
This is what we do in the time between… we wait, we hope, we pray (if we pray) or we just focus on what we can control (not much) and try to make it through to the 1 year, the 2 year, the 5 year, the 20 year … the natural progression of what we think our lives should go to - maybe 75, 80 for me - that is the goal. To die of anything OTHER than cancer. Because Fuck cancer.
This is what I do in the time between...
At my last "follow up" on April 9, 2018
There are so many things I have had to let go - past hurts, past grudges - things I would normally be able to hold onto for decades are now, all gone. I am transparent or as transparent as I can be by sharing my story and being as authentic as I can in life, love and all matters in between.
Sometimes, though, I have a flashback to when I was going through chemotherapy and it hits me hard in the gut how people can be so cruel, so small minded and so dumb regarding the body's potential to turn on you and how it can happen to anyone, at any time.
I hate to hold stock in karma and the truth is that I wish bad on no one - I do not have time for that. I have made choices and conscious decisions around letting go and probably not pursuing things that if I did pursue might make my finances less grim.
So turn the other cheek is what I did and continue to do but sometimes, I have a flashback or a nightmare and it hits me that there is evil in everyone - that some people exist to be the villain in their own mind and you know what, I pity them. More importantly, I hope that karma skips them - let them continue to live in ignorance and enjoy their healthy bodies, their two boobs or two balls or whatever and let them know that I pray for them - I pray for them to never experience what I did and that though I am broken and battled, I will always be kind, which is more than I can say for them.
This is a tough week for me. I have not been sleeping well and everyone in my family is a "snotmonster" and all congested and coughing (including me).
Of course, this was making me think I should be concerned for me and my health given the whole cancer thing but then I realized that if everyone in my house is doing it, it should be ok, "should be" the operative term.
When I was feeling sorry for myself this morning, something crossed my Facebook feed that made me stop and smack myself. It is the story of a 5 year old girl diagnosed with DiPG the worst kind of brain cancer and given 9-12 months to live. That shook me right up and I am including the link to the YouCaring site so if you can, you will donate something to this family. I do not know them AND I am unemployed but I donated $10. I would have done more, if I could. I know I cannot donate or help every family who is hit with cancer for a child but I will say again that cancer sucks but it is so much worse for a child - give what you can here and if you cannot give, please share the link-> www.youcaring.com/parentsofaveryandyandemilyneill-1047204?fb_action_ids=10214612959054343&fb_action_types=youcaringcom%3Adonate.
Tomorrow I go to Sloan for my yearly mammogram and sonogram on my remaining breast (good old lefty). It is something that has been bothering me subconsciously and I think that is why I have been unable to sleep too well this week like at all. I have been tired and groggy and snotty (not the teenage variety but literal snot) since Monday (and even for some of the weekend, too).
My remaining boob has been prodded and checked at each and every follow up over the last year (with my clinical trial I was seeing my oncologist monthly for a bit and each visit I got manhandled lol going-to-sloan-monthlyor-not-more-about-the-pallas-clinical-trial.html) AND I check it every month on the "feel it on the first" campaign and it all feels ok. Tomorrow, though, is my first mammogram and ultrasound since the big Diagnosis and after that whole cancer plot twist last year, I guess it is normal to be freaked out.
And I think I am kind of freaking out. I mean, I didn't freak out a month ago or even a week ago but I am kind of freaked out now.
I am working hard on putting it all in perspective and seeing that family's story about the young girl being diagnosed definitely is making me put it in perspective and just take a deep breathe, meditate, pray and just deal with whatever it is. I know that my worries today, my freak out right now, is not going to help or even preclude any bad news from potentially happening nor will it make me feel better if/when I get good news, either - it is just a waste of energy to worry right now. I know I need to stay focused and smile but damn today, the day before I go in to sit in that waiting room in that robe waiting to be called and squeezed and prodded, I am freaking out.
I hope that I get it out of my system today but between everyone's cold, coughing and congestion (it is like leaky faucets over here, no joke) I just know I need to rest and not think about it. I should instead by thinking, well, it could always be worse so let me just enjoy today, right now, no matter what happens tomorrow, I have this time between and yes, we are all feeling yucky and I am exhausted and not at all ready for tomorrow but I will get it over and done and survive it because that is all I know how to do. It is how I got through chemotherapy just that focus to just get it done knowing it was something I had to do in order to get to "cured" or "healthy".
Did you freak out at your first follow up mammogram and sonogram after breast cancer? How did you deal with it? I know now for next year that I need to take better care of me before these testing dates come up because I do think if I did not feel so yucky and had been able to sleep better, I would not be as freaked out as I am ... (it is like a game of what came first, the chicken or the egg though because I probably did not sleep well because of the worry for the upcoming test...)
What do you think?
URGHHHH - I am in such a bad mood right now! (That I am reading this and writing it really like a teenager... sorry for that, I had to VENT and with my last name being Vento, you would think I would be used to this...) My bad mood, though, it has to go away - I have to come to grips with the things that are bothering me.
1- No one picks up after themselves -- this is getting ridiculous. I have 4 other people and a puppy in this house and not one of them picks up a dang thing. Yeah, that's right, I am calling out my puppy. Just because he is so cute does not mean he is exempt!
2-No one cleans. This is just something that makes me crazy - everyone has eyes and can see the kitchen is a mess, the bathrooms need scrubbing, the groceries need to be put away and organized but yet, I am the only one who does it. My husband knows I want a clean house for my birthday tomorrow but I guess it is coming after I clean it -- URGH!!
3-My oncologist does not agree with my supplements. This is a big one and probably the trigger as to why 1 and 2 bother me so damn much today. I met with Sloan's integrative medical doctor months ago and was kind of left wanting more. The appointment was fairly brief, I was given 4 supplements to take that I think everyone who meets with him is given and I was told to lose my belly fat.
I lost my belly fat and then some and now I wanted to explore other ways in which I can keep my body as inhospitable to cancer cells as possible. No matter what, even though I did my surgery, chemo and radiation, this does not mean I am "cured". It does not mean that I will never get sick again or God forbid die before my time due to the word "cancer".
I believe in doing anything and everything I can to avoid this happening to me to my family and just in general because I am not done skootching the shit out of everyone in my life yet. I sent over the list of vitamins and supplements the nutritionist and I decided on - and read, he and I decided on them. I had done my research and knew something and he knew a whole lot more than me. Before setting me up with said vitamins and supplements, he met with me for an hour and a half, sent me for very specific blood work and then after the results were in (3 weeks later), we met again for an hour and reviewed where my blood is "lacking" and what this means on a genetic, cellular and cancer-hating level.
My oncologist's office called today to say that she does not approve of me taking these supplements except for the few prescribed by the integrative medical doctor at Sloan integrative-medicine-clinical-trials.html. I would never criticize Sloan - I love them and think they saved my life. However, they are known to be traditional and not as forward facing as maybe other hospitals.
I hate to feel as though I am gambling with my future, my health but really that is what life is - life is a gamble. One never knows what will happen in the future. I was not given things that are "radical" or "unproven"; I was given supplements like Vitamin D, Magnesium, Vitamin C and some other items which I will write more about later when my brain calms down.
All I want for my birthday (tomorrow) is a clean house and some further conviction in what I want to do to treat my WHOLE BODY not just the breast that got me into this mess and is now gone. How can I keep my whole body as inhospitable to cancer cells as possible both through modern, western medicine, nutrition, supplements, what I eat, how I manage stress and all that all the while knowing that everything can be futile that there is still that unexplained 1/3 of early stagers who wind up with stage IV cancer.
It is a continuum both health and life. We make choices and we have no idea what the end result will be and I felt the same uncertainty and worry when I decided to sign up for the clinical trial through my hospital and yet when I found out I got the pill and not the study arm without medication, I was at peace lets-get-clinical-clinical.html.
Right now, I am looking for peace - the ability to be at one with my decisions. That these supplements and vitamins that I am supposed to take for only 3 more weeks (total of 4 weeks; one is done already) will not harm me and will instead help me.
I also hope for a clean house tomorrow, to shake my cold, to experience joy and gratitude right now and tomorrow for the passing of a year that was one hell of a freaking year and to all good things ahead.
Deep breathes and all that -this is what I do in the time between.
Do you take additional supplements in addition to your oncologist "approved" medication? You can check out my About Me page to see what else I am on... About Me.
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.**
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...
What I posted on Instagram about December 2017 vs 2016; follow me @thetimebetweenis or on Twitter @timebetweenis
I have always loved December. It is my birth month, after all, and the holidays and even getting only one gift as a kid instead of two since birthday was so close to Christmas was not enough to ruin it. I also met my husband in December and sometimes that is something I celebrate and sometimes.... welll.....just kidding - at the end of the day, as I wrote here on this blog, he is a good man and I am lucky to have met him in-sickness-and-in-health.html.
Now, of course, after my breast cancer plot twist, I have even more reason to be in love with December. My birthday is December 13th and on that day last year, my big 4-0 birthday, I was getting a pet scan, which I found out the next day was all clear (best birthday gift ever) and then three days later, I had my surgery.
After the operation, when I was snoozing off the anesthesia, my surgeon called my husband and told him, "All of the cancer is gone; I removed all of it." I guess now December 16th is the day of my re-birth. I will NEVER thank cancer but without it, I would not have become this improved version of me that I am today.
In the past, I worried about everything. I was not truly happy in my life no matter what. I would focus on the negatives and be so stressed and tired and not give a shit about taking care of me. I was the LAST person on the list for anything in my mind. I judged other people for taking care of themselves and for that, my silent judging, I am sorry. I held myself up to a standard that did not exist as I wrote about in my Open Letter to me an-open-letter-to-me.html.
I wrote about my PTSD and all of the medical tests I subjected myself to recently all-about-the-ptsd-post-breast-cancer.html and wanted to update that on December 1, I got my final report back for the endoscopy and everything that was biopsied was benign! I spent time worrying over those 3 weeks of waiting but nothing near to what I would have done before I walked the walk of a breast cancer patient. I did not let it take my joy, I did not let it take my sleep and I did not let it take my peace.
This month, I go and see my surgeon on the anniversary date of when my husband and I met. We went 16 years ago now on a Thursday night in December that feels like a lifetime ago. He was still on the job and working 12-24 hour shifts down at "ground zero" as we met the December after 9/11. We made it work, somehow, and next year is our 13th year of marriage. So on 12/21 when we are at Sloan for my mammogram, ultrasound of the remaining breast and my follow up with the surgeon on the mastectomy site I want to also celebrate us somehow...
Instead of worrying about these upcoming tests and visits, I am instead going to focus on the joy- the joy of being "cancer free" at least as far as I know :) and I want to keep it that way. Last year at this time, I was not cancer free and it really put everything in perspective.
I am still here, I am standing and this is what I do in the time between. I also decided as an early birthday gift to myself of upgrading my Weebly website to streamline the URL to just www.thetimebetweenis.org and also to add in the Search bar (really for me so I can find stuff easily...
Happy December to all of you - I wish you peace and happiness always and great health!
This month is my cancerversary --> its-my-cancerversary.html and for some strange mental reason, I decided to do a bunch of medical shit this month and I am really regretting it and recognizing how I had no idea how deep my PTSD goes after living through a real medical diagnosis and hoping and praying to stay healthy.
So just this month, I did the following:
I am doing the best I can to not think doom and gloom. I know deep down that my thoughts cannot change the results so why should I beat myself up and ruin my holiday season on the unknown. Until it is known, I can keep focusing on being "cured" or NED of being me of being free.
I shared my PTSD on instagram and so many people commiserated and knew what I was talking about (consider following me there @thetimebetweeenis or on twitter @timebetweenis - I am sharing it here with more detail to hopefully help someone else as they learn to navigate this new world in the time between...
The saying, "The pen is mightier than the sword." is something I have heard my whole life and I believe in it strongly. I write because it is something that connects me to others and it helps me expunge things that should not be held anymore.
I never understood the true power of writing though until I began to share my breast cancer reality check. I challenged myself to blog every day for this, my first "pinktober". I had been blogging intermittently from June just when the "mood" hit - and it hit often but not ever daily.
I spoke about this in terms of when I ran my own business, I blogged every day and about many different topics to establish myself as an "expert". Now, I am just sharing what is on my soul that connects my story to so many others - so many damn others who were just walking around living their lives and then BAM - CANCER.
Blogging every day and sharing my story in ways more intimately, less showy and really just being ME unabashedly and unashamedly. I got cancer and I lost my voice. I was cowed. I was treated differently by people because I allowed it to happen. I did not know yet I was an Amazon who can topple people's misconceptions about disease and life. I am a mom, I am a wife, daughter, sister, friend and now I am also an advocate.
Know your breasts, get your screening mammograms and if you are going to donate to a cause, watch where you donate - make sure it is an organization that will help your local community or the people who need our donations most - the Stage 4 Breast Cancer patients for whom there is no cure.
This laptop is my pen, my social media is my sword and I am out there sharing and free - and ready to keep on going through this month to show the true side of what breast cancer has been like for me.
This is what I do in the time between.
I live in a "new reality"- I am not one to complain and in fact, I am not much of someone who can sit around feeling sorry for myself either.
Life drew me a card and the card is cancer - it sucks but I often found a way in the past to "hide" behind any raw deal I thought I had and to use it as a "trump" (no pun officially intended) card like, "Of course I could not do that, I am busy with XX!" (XX being anything that was, at the time, seemingly insurmountable, stressful and just all around bad - ha, in retrospect, it was just a minor blip, nothing serious, etc.).
When you hear the words, "It is cancer." everything else stops. You realize you would do anything to have those old problems back and you have a choice, I guess. Your choice is to either face it with all of your fury and smile in the face of this fucked up thing or you can cower and hide and "run" metaphorically into other emotions.
I did not feel I had a "choice" - I just naturally went with the first option - just try and kill me, you stupid cancer, I will kill you and all that. Ultimately, though, I am not stupid - I do know that whichever attitude you choose to take in your cancer plot twist does not mean you are either cured or not. The true thing is that there is no answer as to why 1/3 of breast cancer patients get stage 4 cancer (which is not curable and is a death sentence).
I do not "mind" when people tell me I am a fighter or to keep fighting but I DO. You see, no matter what I do including being positive and smiley and farting rainbows, etc, there is still a chance that I could die from this disease. I could (God forbid) have this "good cancer" (HA!) kill me and there is no crystal ball that I or anyone can use to say "YES/NO/OUTLOOK IS GRIMM".
All my girls who ask me, "Are you okay now?" I love you all and I get it - there is this overarching narrative that "early detection is key" and that "Breast Cancer is fuzzy and the 'good' kind to have" - all of that sounds lovely but my early detection came at Stage 3A - I had no risk factors, warning signs or other indicators that would even lead me to think I could get breast cancer (what-is-your-breast-cancer-risk.html).
I wrote about it for Vice Magazine, too (what-it-means-to-say-you-beat-cancer-media-portrayal-of-cancer.html) that there is this confusion as to what having cancer really means and what it means to "beat" cancer. I plan on beating cancer but ultimately there is not much in my control. For my sisters who wind up metatastic, I get it - there is NOTHING you could have done to avoid it. Cancer is like that - it wants to spread and no matter what even doing operations, chemotherapy and radiation, eating beets only, eating veggies only, stopping smoking, smoking pot, no matter what there is this 1/3 of us that wind up having it spread and if it does then no one did anything to "deserve" it.
It is chance and for me, statistics and chance are things I try to avoid thinking about. We cannot control what the future brings - for me, I just listen to my doctors, stay out of my own head and focus on today because tomorrow is promised to no one.
This is what I do in the time between...
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