2017, you sucked. I am so glad you are (almost) over. This year, I missed out on so much because chemotherapy broke me, radiation burnt me but I also learned so much. I found I could get out there and unmask myself, show my bald head, tell my shame of getting sick of losing my job of being judged as being “too sick” and “not worth it” and showing the world that I am worth something, that even though I got cancer, I am still a person, someone who is not to be pitied or ignored or forgotten.
I watched my children learn the hard way how sometimes life is so unbelievably random and unpredictable. I watched them also learn how people can be so amazing and kind. I saw them worry about me dying and I was also worried about me dying and it is just too much to all be worried about death. I spent time hugging them and reassuring them and just all around trying to believe the hype, too.
I learned that cancer is something that never truly goes away but if you are lucky it will not kill you. I have always known that what does not kill you makes you stronger I almost feel like I did not need this masterclass on this topic but it is what it is and it can always be worse.
Usually, during New Year's Eve in my past, I would cry a little when the clock struck 12 and think about the time that passed and what I did or did not do. This year, I refuse to cry. I am finishing up a year that was spent primarily in treatment for cancer with the extra dollop of joy of being told I did not have a job for next year and other crazy stuff like family member’s health and being a caregiver even though I was not yet fully healed and more.
There are many things I want to focus on for 2018 and the most important thing is to not worry. You see worry is something that does not help anything. It does not change the trajectory of the future, it just ruins today. I am confident that I am healthy and will stay that way but sometimes, I worry. Right now on the cusp of saying goodbye to 2017, I want to promise myself that I will not go down the road of “what ifs”. I have been doing pretty well with not thinking about the possibilities but so many people have been dying of cancer lately and it truly is a disease that is so misunderstood and sometimes, the thought does cross my mind that I could be a victim. I want to think it even less.
I know I need to find my “next step” my new path after the plot twist of cancer. I know this will help me to heal, to feel whole again. I also know I need to continue to doing what I am doing - practicing gratitude, exercising every day, eating super clean, taking vitamins, my clinical trial, my hormone meds, my hypnosis, meditation, and writing. Writing above all. I would love to find a way to use my writing abilities to bring in an actual income. I am working on some things that might help me be able to do this but in the meanwhile it is a way for me to get out how I feel, to make and keep new friends who are also dealing with this crappy thing called cancer and to get out of my head. In writing it down, I theoretically can no longer hold it inside.
In 2018, I want health and wellness (and a cure for cancer). I want to be doing something meaningful in my charity work and also in my career. I want my children to be confident that I am not planning on going anywhere. I want to continue to share my story and hopefully help other cancer patients who feel the way I did know they are not alone. I want to have many years left to travel, to hang out with my friends, to watch my children grow up, to dance with my husband, to make inappropriate jokes and to just enjoy being alive.
I do not want to deal with pettiness and nastiness. I do not want stress. I do not want to worry about what happens if cancer does X or Y or Z. I want to “forget” cancer was in my body and instead focus on what I DID get from this heinous disease. I got the ability to try to live in the moment. To have grit. To show my toughness. I always knew I was tough but now I got my doctorate in it. I hope for all of us to have a healthy 2018 and beyond. For cancer to be a thing of the past.
What do you want to manifest in 2018? How do you manage cancer fears?
My “Poem” for 2017 (this is why I am not a poet...)
2017 I hated you so much
You had to come along and punch me in the gut
In 2016 I lost my boob
because cancer got caught there and made me a fool
after my mastectomy, I thought it would be easy
to get chemotherapy
ha I was so crazy
chemo was brutal
I worked through it full time
with a wig and a smile
I suffered without words
and lost my job with a sucker punch in the nads
after chemo came radiation
for 34 sessions
then I had follow ups and clinical trials, I ain’t playing
I lost 50 pounds
in the hope that I will be
Cancer free forever you see
My kids they were scared
My husband and I were too
Because when cancer is something that happens to you
It screws you right up and scares you to death
I have no intention of giving up yet
I am here for good
With nowhere to go
I am a fighter, a survivor a lucky ass though
At the end of the day no one knows the future
The cancer is something that makes it much clearer
Photo below: Xmas 2016 vs Xmas 2017 - in my mind, I was the same size until I did this side by side comparison (160+ pounds vs 137 pounds)
Nothing is perfect; no one is perfect. Everyone has their shit and everyone has to learn to deal with it. No one gets what exactly that means, though. Except me. I get it and always did. I believe that if we all got together and smacked our problems down on the table like playing cards that we each would still want to leave the table with our own problems and not someone else’s. Everyone has some great sadness in their life - everyone has something that did not work out, or some plan B they had to execute that was not their plan.
Shit happens and the real gem of life is learning to take that Plan B and love the hell out of it even if it was never in your plan or thought process. For me, I never ever planned to learn to live with such dignity and grace in the face of such adversity. And I thought I knew adversity and I thought I knew what it meant when someone said, “you don’t know how strong you are until being strong is the only choice you have”. Stupid me.
I have found that when I was weakest and most downtrodden was actually when I was most strong, if that makes sense. Right now, I am nowhere near as strong and tough as I was when I walked into that operating room to get the cancer removed from my body. I was not as strong then as I was when I sat down in the treatment chair for the first round of chemotherapy. I was never even as close to strong as I was when I went from the first 4 rounds to the new chemotherapy drug and not knowing the side effects or issues that would happen. I am not as strong as I was when I sat through 34 radiation treatments. I am not as strong as I was when I put my name in to do the clinical trial (PALLAS)... well, you get the idea. lets-get-clinical-clinical.html
In each of these steps, I have been stronger than I ever thought I could be. I have just kept rolling with it but it is not me alone. I have had support, prayers, faith and more to keep me sane, to keep me smiling, to keep me focused on the prize. The prize is just simple - it is staying alive. It is staying NED as much as possible. It is being cured or whatever is called “cured” for this disease.
It means I have worked hard to change my whole body, what I eat, when I eat and what I do on a daily basis. See, most everyone has “cancer” in their body in the sense that they have an errant cell that wants to do bad things but for the bulk of the population, this errant cell is killed immediately and cannot reproduce. In the words of my nutritionist, Dr Napoli, for cancer to happen it has to be a “perfect storm”. The cell has to be able to do it’s bad work and thrive inside to create the tumor and ultimately spread around.
For me, I was diagnosed after a mammogram showed slight calcification in the duct which was microscopic and not able to be biopsied; it also was 98% chance of staying benign. A few months later, I had “advanced stage” breast cancer with a tumor of 5.6cm and 5/25 lymph nodes positive for cancer. This means there is always the chance that the cancer moved and got someplace else and it also means that whatever is wrong with my body has to be corrected and/or fixed for the just in case’s of cancer.
See, no one is ever truly “cured” of cancer. What it starts in your body, it can always come back. My above referenced nutritionist told me about a conference he attended where it was said that, “85% of cancer patients do not change anything after they are done with treatment.” If this stat is true (and you know what they say about statistics…) that means I am one of the 15% that got myself totally upside down after cancer.
As I have written about a lot on this blog, I read the AntiCancer book learning-about-the-beast-breast-cancer-anti-cancer-book-review.html and that started the seeds of what would ultimately become a total life transformation. See, I was never “obese” but I was up 30, 40 or more pounds from what I had weighed in my “youth” but you see, as a woman who has been pregnant and has children, you just do not think that weight is possible. I looked in the mirror and saw yes a curvier version of me but in no way did I really see me. I saw a woman who still wore a size Medium and just had some extra weight I mean didn’t we all? I am still friends with girls from high school and college and other friends who all say the same thing, we just are not the same body types we were when younger.
Well, then I got cancer and realized there is a big link between excess body weight, hormones and cancer and all that jazz. So I did something I never thought possible and would have smacked you if you suggested it in the past. I weigh 137 pounds, which is what I weighed in high school. It is insane. It is also something very different because in high school, I ate donuts and crap and did not exercise and that was my weight. Now, ha, I have to forgo sugar, exercise daily and fill up on fruits and veggies instead of chips and popcorn.
I am telling you all of this because when I saw my surgeon’s office this December for my 6 month follow up, everyone lost their collective minds and told me I was amazing and that I did the best thing I ever could have done for my health. I am not sure if anyone other than the alternative medicine doctor which I wrote about here integrative-medicine-clinical-trials.html ever told me that unequivocally that weight was so dangerous or if I was told I did not register it.
See, I will do whatever I have to do to keep my body inhospitably to cancer but I will not fall for fads or other crazy things. I am focused on research and proven methods to improve my body and its reaction to rogue cells. To do this, I am working with my nutritionist as well as my doctors at Sloan to balance all of the pieces of health. I no longer eat to just eat. I eat to fuel my body. To help the fight. I do not take a multi-vitamins, I take some supplements that are proven to help my immune system do what it needs to do. I do not let stress, worry and fear into myself (as much as I can not let it, I force it to not be there) and I also exercise and move every day.
There are no guarantees, however, that any of this will work as ⅓ of cancer patients regardless of initial staging become metatastic but I will continue to do it anyway because it cannot hurt.
What do you do to help keep your fears of cancer returning away? What do you do to try to not get progression of your disease? How do you keep your body as healthy as possible?
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?
I keep writing this blog post and deleting it and then redoing it. There are things that I guess are better off left unsaid but sometimes in not saying the things, it eats away at you or at me - it eats away at me so I had to write it, feelings be damned.
As this year 2017 draws to a close, I have to believe that the comeback will be bigger than the setback. What do I mean by this? Have you ever met people who have been through the wringer? Like widowed with 3 young kids and needed to make it and turned around and got themselves through school ALONE and became a powerhouse attorney type of comeback?
I know some people who have done these types of things and I just want them all to write a book on how the hell they did it. As I sit here, post breast cancer plot twist having lost my job and trying to work on my own comeback, I want to have some guidance, some roadmap so to speak of how to do this.
I am standing and kicking butt and taking names, applying to jobs, managing my family life with a renewed focus on ME, my husband and my kids. I had been pulled in many different directions lately stemming from the needs of other family members and I had to stand up and say, “NO. Enough. It is now time to do what I need to do for me.”
In my life, I have been the caregiver for many, many people. I have been the person who keeps it all together. Who makes sure everyone feels welcome and well and, well, I am DONE. I am writing this more for me than anyone else so if you are confused already, sorry. This is a note to me to remember that I matter, that my health, well-being, sanity and time are all precious and important. That I am a good person who cannot get lost in being a people please-r. I have 2 children not 10.
I promise to keep putting me first - to stop trying to be the superwoman I have been acting like again. It is so hard to let go of bad habits. It is not my responsibility to care for everyone. I have to be focused on my small family, our home, our life and let the rest go.
This does not make me a bad person - it makes me ME.
My New Year’s Resolutions are unique this year - I did not make any last year except, “Survive” and this year, I want the same thing but with a bit more.
1- Survive - keep on keeping on in my training to be a survivor. Keep exercising, eating right, keeping myself positive and on track.
2- Letting go- know that I cannot hold on to the pain, the hurt or the betrayal but instead need to stay light, lighter than air to do what I need to do.
3- Work - find my next step, my perfect job/income generating plan to make my life work to be able to stop having so much free time but to balance it with my kids and family.
4-Health - See, survive is for me, health is for the other members of my family. Remove all sugar, get us all on a work out routine, stop my husband from smoking and other destructive habits (sugar, no exercise, etc).
What do you want to do for the upcoming year? What did you find were things you had to let go to survive? What do you know about your comeback? What is your comeback?
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?
I am and have always been what we call an “old soul”. What does that mean? It basically means that if the movie is black and white and has a song and dance routine, I am sold. It means if the choice is between staying in and reading or going out and dancing, I’ll be reading. It means that I spent a lot of time growing up with older people and for a while my “crew” included a bunch of 70-90 year old ladies who were the shit, end of story.
Over the last year, I lost my crew of ladies who were there for me all the time, any time. Who I could call up to complain to or to cry with and who always got it and always told me the same thing, “When are you going to take care of you, lady? When are you going to rest? You run around like a chicken without a head.”
On one hand, I am glad they passed before I got sick so they did not have to worry about it for me - but, on the other hand, I missed them a lot during this cancer plot twist and also just in general.
My aunt Jean was my grandma’s best friend and then she became mine. I lost my grandma when I was 23; it was my first real loss. My grandma kind of raised me and she took care of everyone and everything for all of us. She could cook like a big time chef and was just so damn proud of her kids and grandchildren it was crazy.
My grandma and aunt Jean would often be in my kitchen, drinking coffee and talking about everything -- aunt Jean had a mouth on her that would literally scandalize every living and dead truck driver / sailor ever since the beginning of time END OF STORY. Every kid in my family learned every bad word from her AND called her “aunt”; though she truly had no relation to us but she was there from before we could remember.
Every pair of shoes I ever owned for big events from baptism to when I got married were bought for me by aunt Jean. She always sent me the first birthday card and it always had something in it. She would beat my husband into shape anytime she was over. I would pick her up and take her to visit her children, who ALL predeceased her, at the cemetery. She was a strong ass lady who lost her husband young and never looked at another man.
Her hair was always perfectly coiffed in a blonde chignon and her makeup was always on point. Every finger wore a ring and earrings and necklaces were also used and sparkling. Her clothes were always pristine as was her 3 bedroom railroad room apartment on the 3rd floor in Park Slope where she lived for over 55-60 years and where she independently lived, cleaned and went up and down those 3 flights of stairs until she was 91.
She lost her husband when she was still in her 40’s and then right after that her youngest daughter died. Her son died years later and her oldest child died on mother’s day suddenly and without warning many years later. I would take her to the cemetery and she would visit with them and say, “I think God forgot about me but I live for my ‘kids’.” I was her “kid”, my kids were her “kids”- everyone were her “kids” and she thought of us and took care of us and I tried to do the same for her.
She passed away when I got my first full time job in over several years and I just felt that I could not take off to go to the funeral though I went to the wake. She was 93 and I guess that God remembered her and I hope she is in heaven with her husband and children and also watching over me and my family as she did when she was here. In life, she and I were together a lot so I forgave myself for not going to the funeral. I know she would have understood and I can still hear her in my head telling me to rest and relax when I try to do too much but it is a lot more colorful than that with some “f” bombs and such. She is definitely one of my guardian angels.
My other "golden girl" is someone that came into my life kind of by accident. My mom married her son and she became a step-grandma to me and step great grandma to my kids. No one could ever say anything bad about Roe - she was just the best lady you ever did meet. She was strong, too.
She adopted her 3 children before it was “trendy” to do so and when it was actually “easier” to get young local children to love and care for - but to these kids, she wasn’t their “adoptive” mother, she was their mother, full stop. She was always chatting and vivacious - she would take one look at me and go, “Why don’t you slow down, lady? You need to take care of YOU! What happens if you fall down?” I think her Irish eyes could see the future.
She passed away right around my diagnosis; in fact, I missed her wake because I was meeting with my gyno to go over my “official” breast cancer diagnosis. When I found out I was “officially” with cancer, my mom and my mother in law and my dad and my brother were all at Roe’s wake and believe it or not they all came together even though my mom and dad are totally the old school of divorce where it was all the other ones fault and all that crapola - but they were all crying together and came to my house and then my mom, husband and I went to my doctor while everyone stayed home with the kids doing a tremendous job of “Oh what, nothing is wrong, everything is GREAT!” all teeth smiles and more.
I often think about Roe and her sage advice, along with my aunt Jean. I had friends my age who would run over to come sit with Roe and aunt Jean whenever I was having an event or a big dinner. They were ladies who had some big shit happen to them. Roe lost her husband in the 70’s and she too never looked at another man. They both were all about family and also the voice of reason to try to tell me to calm down, to take it easy and I NEVER EVER LISTENED. But I am listening now and it is their voices in my head when I know it is time to calm down and sit and take care of me.
One night, in the midst of chemotherapy and working full time, I had a dream and in it, Roe was there - we were at a party, a wedding of some kind and I looked at her and said, “How are you here? You’re in heaven.” Her answer to me was, and I quote, “I was bored so I came to visit.” That is just Roe - she would do whatever she wanted and ask permission never- my aunt Jean was like that, too. The next morning, I mentioned to my mom the dream I had and how Roe was just being Roe and she burst out crying and I was surprised but she told me, “Lisa, last night, I was telling Mick <her husband> how much I wish Roe was still here to help you go through what you are doing with chemotherapy and shit and then you dreamed of her! She listened to me!”
One of the last times I took aunt Jean out to do her errands and to the cemetery, she wanted to go into a deli to return something she had brought that was not needed. I went in for her as her legs were not doing too great. When I came out to tell her the story did not take returns, aunt Jean went gangsta. “Let me out of this car, I am going to f*@### kill him, that motherf*@#DDS, I will kick him to death with my good leg!” I just sat there laughing and holding her back while my kids put their hands over their ears as they were used to this from years and years of being with aunt Jean in the car. I just know I have some (well a lot) of her spunk and fight in me and I think she is lending it to me from heaven.
Both of these women loved my kids as though they were their great grandchildren. It was amazing to have so much love and so many women to fulfill the missing of their great grandparents. Not a day goes by when I do not think of them and how much fun they must be having in Heaven. I am sure there are a lot of new vivid vocabulary being learned by all the angels and saints, though. May they rest in peace and may perpetual light shine upon them.
What do you think? Do you have any special family members that you know helped you from heaven during your cancer plot twist?
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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