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...
So I have been diligent and dedicated to doing all that I can to hopefully make my body as inhospitable to cancer as possible. I do know that it does not mean I am in the "clear" and that I am still very close to being that me who had cancer in my body. As fast as time goes, it goes slow, you know?
Last year at this time I had just completed my second of eight chemotherapy treatments. I was lucky in that I was able to "bounce back" and work and avoid infection and basically did all of my chemos on time (except for a 5 day delay to up my platelet count which, at the time, felt like the end of the freaking world but in retrospect was really not a big deal).
I see now as I am super involved with the community of women (and some men) who go through this plot twist that I was super lucky. There are folks who cannot tolerate chemo (like literally their bodies break down and they wind up in the hospital for days) and there are folks who had infections from their surgeries and there are folks who went in for a simple procedure but found out the cancer had spread and a surgery would not be enough to help them...
At the time, of course, I did not know about these other alternate realities as I was so damn busy hiding from my actual reality. Yes, hiding. I did put on my smile and joke and get through the whole soup to nuts of cancer but I did it as though it was a bad dream that I would wake up from ... of course I realize now that it was not a bad dream BUT that it could always be "worse".
Now, I am in "fighting form" down to my high school weight and I deal with people consistently approaching me with that look. That look that says, "Oh, you are dying." And they ask me, "Are you okay? You look really bony." To which I go, "I am fine, thanks. I weigh what I did in high school and no one ever called me bony then so thanks." Then I will hear, "But are you sure you're okay because you are so thin." To which, again, "Thanks - no one ever told me that before as I still have my tummy and my curves (though just one I guess with the other breast gone... but yes I am ok as far as I know."
It never stops really. People just often do not know what to say or do around cancer survivors in training. It happens to me quite a lot and I chose to let it flow off my back now. I take the pitying looks and think about how much instead I pity THEM. They do not know yet that life is for the living. That nothing is worth getting stressed over. That they are beautiful no matter their shape or size. That even if things really suck right now it is nothing compared to dealing with a life threatening illness for themselves of their loved ones (God forbid). They do not have people who love them unconditionally and who they can IG chat with or call at 2am to share the new world, these new words and experiences we know and go through as cancer soon to be survivors.
I want to take a minute and take my hat off to the women I follow, who I have come to know and love, who are trying to do all that they can to take back their lives from this beast called cancer. I was lucky to have had my children before I was diagnosed with cancer. The type of breast cancer I had is one that makes any future children impossible, which at times, even though I am "older" at 41 is something that makes me think about what my 3rd child might have been like if I had been able to have another. I know I probably would not have had another but I had the choice before. Now, I do not.
My body has been in menopause for a year this month. I take a shot to suppress my ovaries every 3 months and I take a daily hormone inhibitor pill. Still, if I am you know with my husband, I have to use another form of protection JUST IN CASE. As my husband looked at me and I fell pregnant in the past (though struggled with some miscarriages), I have to be very careful as I do not want to be in the position where I fall pregnant and it's my life or theirs.
I follow women who were not lucky enough to have had their children already but still want to start a family. I think they are true heroes. It is not easy to plan and grow your family under normal circumstances and to do it after cancer (or the women who were diagnosed during pregnancy) WOW I want to say God bless and good luck to all of you who are out there building your families for the first or third time behind this wall of "cancer patient".
I spent my son's pregnancy worried and stressed after my miscarriages only for fear he would not make it but to worry also about your OWN health and if you can do it without waking the beast is even scarier. Of course, not all breast cancer is the same. Not all people have hormone positive breast cancer, as I do/did. My cancer was fed from ER/PR (estrogen and progesterine).
So this post is to all the soon to be mama's out there who know what it is like to be bald, to lose a boob, to lose their sense of constancy in this life - may your have tons of baby dust, be fertile and have uneventful pregnancies. May you all hear from your daughter as I did recently from mine that, "MOM, the world does not revolve around you and your ONE BOOB!" -- I mean, I had no idea of that until she told me. May you all hear your son say to you, "Mom, you are boring. Dad is more fun." (Yes, it is true but I am also an adult and my husband is a large child - in the best of ways, I love him dearly but he is just a big kid...)
So here is to us - the parents who know what battle scars look like, who know when to get stressed and when to just let it go. We have been to hell and back and we have no clue that once we have teenagers, it is ALL OVER. Can't wait to get there together!
This is what I do in the time between....
I have been writing a bit about my clinical trial here but have not updated in a while. I decided, after careful thought and prayer, to sign up for the Pallas clinical trial back in August. I had just completed all of my "treatment" and was now down to going to see doctors once every 6 months but with surgeon and oncologist, that wound up to be every 4 visits a year as I would go in May and November to oncology and June and December to surgeon. Oh and in between those dates, I go in for my Lupron shot every 3 months, too so that is usually February, May, August, November.
I completed chemotherapy in May 2017 and my last radiation was July of 2017. I saw my oncologist once after chemotherapy only. She recommended at that visit that I consider joining the clinical trial for IMBRANCE (called the Pallas trial). I wrote all about my decision process and how the trial works regarding if you get the pills or not here --> lets-get-clinical-clinical.html and also here --> integrative-medicine-clinical-trials.html.
Getting cancer is almost like a part time job, really. There is so much to do but for many people, there is a "post treatment" funk that is common to all cancer patients, in my opinion. We go from seeing doctors and medical teams every 2 weeks for treatment and bloodwork and then we see everyone much much less. For me, this is not the case but it could have been if I decided not to do the clinical trial.
Yesterday, was my visit to get bloodwork and the next 3 cycles of drugs for the trial. Originally, I was going in every 2 weeks to do bloodwork and then at the 4 week visit picking up the month's pills (see more about that here - going-to-sloan-monthlyor-not-more-about-the-pallas-clinical-trial.html). I last was with oncology in October to do the bloodwork and then I was given the 3 cycles of pills. I am now on the 6th "cylce" or month of Pallas. I have been lucky in that I have not had any noticeable side effects. I do have low blood counts, which is normal for this class of drug.
The trial lasts a total of 24 months. I am happy to be doing my small part in helping test a new class of drug for breast cancer patients. It is an already FDA approved drug for those with stage 4 breast cancer. It is being studied to see if the same effects of cancer killing can be proven in earlier stages. I do this trial in addition to my hormone inhibitor and Lupron ovary shot.
I will update again on how it is going. Did you take part in a clinical trial? How did you find it? This is what I do in the time between.
A year ago today was my first meeting with my oncologist at Sloan. Before that, on December 29 2016, I had the meeting with my surgical team to go over the results of my pathology. It was overwhelming and although I already knew I had lymph node involvement (we were told as soon as I woke up from my mastectomy on December 16), it did not really compute, you know? I mean, I knew that meant I needed "chemotherapy" but I had not a clue what that meant at all.
Ah, ignorance really is bliss. I knew it was big and I knew it was something I had never ever envisioned myself doing...like ever. I think, though, this is true of all of us no matter our family histories or our backgrounds, "risk factors" or lack thereof, etc. No one expects to be told they have cancer and no one WANTS to get chemotherapy. No one.
I felt my oncologist's pain as she sat with us a year ago today for almost 2 hours (or more maybe) going over all of the ins and outs of what chemotherapy I would be getting, why I was getting it and about the side effects and how to help/manage said side effects. She wrote everything down for me in amazing handwriting, filling pages of information for me. It was an amazing appointment and one that without the written notes she wrote down for me, none of it would have sunk in.
At this point, I was working full time as a teacher, I even went back to work early after my surgery to be back to "normal" as soon as possible. It was a relief to have the cancer out of my body and I knew deep down that this whole chemotherapy thing was going to stop me from being "normal" and I was scared shitless. I had no one really to commiserate with other than my angel, my sherpa, who Sloan connected me with who quite frankly saved my life with these --> tricks-for-treatment.html for chemo.
You see, chemotherapy breaks you down. It strips away your hair, your dignity, your brain, your ability to "do anything" so that your body can ironically heal. It is quite confusing and I know there are a lot of people who are pressured from family and friends to forego chemo and instead to lick a unicorn but really, chemotherapy is one of the best tools out there to hopefully kill cancer cells.
When I began chemo a week after my first meeting with my oncologist, I was prepared and yet totally unprepared. You see, no one knows how their body will respond to these drugs. As someone who rarely took an advil, who didn't drink, who never took drugs, well, this was all uncharted territory for me. (And yes, I know I'm a square... I don't even drink coffee... what a dweeb. I mean, if I knew I was going to spend the big 4-0 getting pumped full of all kinds of shit, I would have imbibed a hell of a lot more.. .or period lol).
I survived chemotherapy and I worked full time during it but I could not do much else. I was not able to care for my children, to cook, to clean, to really move beyond that school bell at 3pm when I went home from work and just became a vegetable.
It was hard as shit. I was told I would have support, that everyone would be there for me but the thing about chemotherapy is that it strips you down to nothing. No matter who is "there" or not, you can barely notice. You are just functioning at the barest minimum. Still, I worked. I got up each morning, put on my wig, my lipstick and went to work. As a teacher, I was exposed to germs, the flu and more. Luckily, I did not run a fever during chemotherapy. I did learn how people can be nasty and heartless. I let it go here --> an-open-letter-to-me.html.
If you are here, at your first oncology meeting where I was a year ago today, you got this. Trust in your self, in your body. Do what you need in order to survive this process. God willing, you will never need to do it again ever. Remember, though, our sisters and brothers for whom chemotherapy is an endless routine to keep them alive. Pray for them. Pray for us, all of us, that a cure will be found. In the meantime, drink lots of water. Rest. Listen to your body and read and share my post about treatment tricks (link below). This is what I do in the time between...
I have noticed lately that there is this huge improvement in the way I just manage life but I will never thank cancer for anything so I am just going to chalk this up to me being this “new and improved retro weight me”.
When I was diagnosed and in the middle of the worst shit anyone with cancer can explain to you I still kept things positive, laughing, smiling and just overall being like, “This sucks, but it could always be worse.” People constantly told me how amazing my attitude was and how they were in awe of how I chose to be and I was always surprised because as I told them it was not a choice; it is just who I am. I have spent a lot of time in my life making lemons out of lemonade, I guess.
I never ever expected to get sick, though. Like really sick. I guess I thought I could keep being SuperWoman forever, keep bottling up my feelings forever, keep moving at the speed of light forever. Now I know those things are not what I want to be, not how I want to live. I want to enjoy life, to be present in the moment and to be more than just “mom” (although it is the best title I ever have had, I know this time is fleeting and that the kids are growing and I am sitting here with many years of being the only caregiver under my belt and it is time to expand the operation).
I hate the idea of people pitying me. I mean, I get it, it sucks to have/had cancer but it can suck more and for people out there who think, “Oh man, I am so sorry for her. I am so happy it is not me.”--> I can just say I used to think this way, too. I used to think this whenever I heard someone else’s bad news. Now, I do not think this way anymore. Instead I think, “What can I do to help that person.” And then I do it.
This is why pity is a useless emotion. It makes you feel as though you “did” something when in reality all you did was think for that moment how much more lucky/blessed/happy you were compared to that person and then a few minutes later, the dog crapped in the house and you forgot all about that other person and how you should be happy you don’t have to deal with what they do.
I think everyone on hearing someone else’s bad news should just be like, “What can I do to help.” instead of internalizing that shit right away and forgetting it.
My superpower is that I know life is precious and worth every god-darn moment and that there are no do-overs. When I accidently pop an extra sudafed, I do not give a shit anymore because I know I have had poison pumped in my veins for fun. I am the person who will try to help you no matter what. However, I, too, have my limits. I have learnt the hard way that being superwoman is not so fun. It means everyone depends on you to do everything and you cannot get a moment to rest.
With my new superpowers, I can figure out what is important and put my energy on that. For me, what is important is love, laughter and the hard work that goes into being a well rounded person. It is hard to balance all of the different pieces of me and the things I want to do. Sometimes, I feel so many emotions at once I cannot manage them all so I need to decompress, meditate, exercise and do what I need to do to take care of me. I can do that all now, too.
I also know that worry and fear are useless. Having all of that fear in my life did not stop anything bad from happening - the bad happened, I got cancer. I know, too, that even though I got cancer that does not mean all I get know is pity and sad faces. I am me, I am irreverant and will tell you all about my fake boob and make totally wildly inappropriate jokes about random things. It is infinitely better to laugh at life than to take it too seriously. There is no “why me” over here just a constant laserlike focus on getting healthy and kicking cancer’s ass one day at a time.
What is your superpower?
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?
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?
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!
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?
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.
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