The Time Between Is
I am working on a trip for just me. Yes, just me. I am going to Mary's Place By the Sea www.marysplacebythesea.org/ which is a retreat location for female cancer patients. My treatment is done but that does not matter (and is it really ever "done" - I am on daily hormone pills, tri-monthly Lupron shot and a clinical trial).
I will be spending the weekend there with a new/old friend - someone who also has dealt with the beast of breast cancer. We will be able to get nutrition guidance, massages (I am not into it but if it something that can help with some post-treatment issues, I am down ) how-to-balance-with-one-boob.html) and also YOGA - my best friend in life is yoga and yet I find it so hard to do my routine. I am still on a cardio kick the-weight-of-a-breast.html.
Is it terrible that I excited about being away from my responsibilities for a bit? I am someone who always gives 100000+% in fact some of my mom girlfriends are still shocked that I let me kids go out without me now. It is something I knew I had to work on and getting hit with breast cancer gave me no choice about it - I had to let go.
In letting go, I realized that I have not been doing anything for me. I mean when cancer treatment is your "thing" you do for YOU and that's it, there might be something wrong with you (or me).
As the trip gets closer (I had requested a trip there over the summer; there is a waiting list), I am getting a teensy bit guilty. Of course, now is the time the kids are realizing what it "could" be like without me as I had to spend a few nights in New York City during my dad's surgery (the-oh-sht-playbook-or-being-my-dads-daughter.html) but that was not at all a relaxing time.
This trip is a way for me to recharge and reconnect with me in a place where I can just be me. I do not have to be wife, sister, daughter, mom - I can just be me. This organization is here for women who go through cancer and the retreat weekend is totally free of cost (I just have to drive to the place and drive home). Meals are included and are plant based so that is a big win for me as I am so focused on my nutrition.
I will be sharing tons from my retreat with photos and videos, too. Keep watching my social media and this blog to find out more about getting away as a mom. I am one of the last people I know to do a trip without kids... I think people are already betting on me cracking but hey I faced cancer and did not crack (much) so I hope I can manage a weekend away to just be me.
This is what I do in the time between...
How to balance with one boob is just the way it was before EXCEPT the little stuff just does not matter anymore and a LOT of it is little stuff.
I, kicking and screaming, actually learned a lot during this plot twist of breast cancer. A lot of the lessons, I think, I would have preferred to live without BUT on a whole, I recognize and understand it could always be worse.
I know the worst thing would be for my babies to grow up without me; for my husband to not have someone like me to kick his ass and still be in his corner no matter what; for my mom to lose her best friend (maybe one of her only friends as she is getting prickly in her old age); for my dad to lose his daughter - the one kid he knows he can always depend on even though I make him crazy, too; for my friends to lose me, the weirdo, who comes up with the strangest things that either crack them up or make them wonder if I am secretly insane.
I am insane. I am someone who always will smile and laugh no matter what because I get it - I always got it I just didn't have it tattooed on my brain until recently. No matter what your troubles are, no matter how bad it seems, it could always be worse. So you just smile, adjust your wig or your pixie cut and your one boobed self (none of which you planned for) and you put your lipstick and earrings on and do what you have to do - and then do 100x's more than what you can do.
Blogging every day this month is tough - it is something I barely have time for as I job search almost full time and manage my household of crazies (myself included). I also have medications to manage and side effects to side step but I just keep rolling with it. I have read some beautiful blogs telling it like it is for those folks who have the right to complain, who have the need to complain and get it out and I feel like I am standing in solidarity with them but I am focused instead on the positive because I just cannot help or change the rest.
I look in the mirror and I love me - all of me, even the missing pieces of me. I have scars, I am hurting but the hurt is nothing compared to what the hurt would be if I could not do this anymore. If I could not be here still ticking still standing no matter what. If you see me and ask me how I am, that is what I tell you, " I am still standing." That is my mantra, my story, my piece of wisdom to kick down to the next generation of women diagnosed.
It is not tough love but it is just reality - if you think you have it bad now at initial diagnosis and you cannot come to terms with having cancer wait until you get to the real hard parts. The hard part is not surgery, in fact, you are lucky if you can get surgery. The hard part is after surgery, beginning and surviving chemotherapy, dealing with job loss or other issues when-god-closes-a-door-he-opens-a-window.html and managing your children's fear of what comes next if-you-are-a-kid-and-your-parent-gets-cancer.html and dealing with the life post cancer but pre-cure. And hoping you will get to the cure part.
If I waited until I felt like me again well - that day may never come. I am this new version of me - and I do not think of it as all bad. I mean, hell, I am down to 145 pounds (holla) and I have not seen a 1 and a 4 on my scale in that order in at least a decade maybe more - the-weight-of-a-breast.html.
Even pre-cancer, if I met my 20 year old self in a time warp or something, we would not have recognized each other. I have made life decisions and grown and lost people along the way that 20 year old me would never understand. I am like an onion, though, because deep down at my core is 20 year old me, is 10 year old me and all of those versions of me are nothing if not resilient and maybe that was all done to prepare me for this new reality the-new-reality-of-life-post-cancer-diagnosis.html.
I cannot complain, though no matter how hard I try. I know I am not naive; I am just someone who was born an old soul, who saw a lot and processed a lot even as a child a-tale-of-two-novembers.html. So do not worry about me - I am over here balanced on one boob and smiling... come join me if you want to hear some crazy stuff. It will be fun, I promise!
This is what I do in the time between.
I live in a "new reality"- I am not one to complain and in fact, I am not much of someone who can sit around feeling sorry for myself either.
Life drew me a card and the card is cancer - it sucks but I often found a way in the past to "hide" behind any raw deal I thought I had and to use it as a "trump" (no pun officially intended) card like, "Of course I could not do that, I am busy with XX!" (XX being anything that was, at the time, seemingly insurmountable, stressful and just all around bad - ha, in retrospect, it was just a minor blip, nothing serious, etc.).
When you hear the words, "It is cancer." everything else stops. You realize you would do anything to have those old problems back and you have a choice, I guess. Your choice is to either face it with all of your fury and smile in the face of this fucked up thing or you can cower and hide and "run" metaphorically into other emotions.
I did not feel I had a "choice" - I just naturally went with the first option - just try and kill me, you stupid cancer, I will kill you and all that. Ultimately, though, I am not stupid - I do know that whichever attitude you choose to take in your cancer plot twist does not mean you are either cured or not. The true thing is that there is no answer as to why 1/3 of breast cancer patients get stage 4 cancer (which is not curable and is a death sentence).
I do not "mind" when people tell me I am a fighter or to keep fighting but I DO. You see, no matter what I do including being positive and smiley and farting rainbows, etc, there is still a chance that I could die from this disease. I could (God forbid) have this "good cancer" (HA!) kill me and there is no crystal ball that I or anyone can use to say "YES/NO/OUTLOOK IS GRIMM".
All my girls who ask me, "Are you okay now?" I love you all and I get it - there is this overarching narrative that "early detection is key" and that "Breast Cancer is fuzzy and the 'good' kind to have" - all of that sounds lovely but my early detection came at Stage 3A - I had no risk factors, warning signs or other indicators that would even lead me to think I could get breast cancer (what-is-your-breast-cancer-risk.html).
I wrote about it for Vice Magazine, too (what-it-means-to-say-you-beat-cancer-media-portrayal-of-cancer.html) that there is this confusion as to what having cancer really means and what it means to "beat" cancer. I plan on beating cancer but ultimately there is not much in my control. For my sisters who wind up metatastic, I get it - there is NOTHING you could have done to avoid it. Cancer is like that - it wants to spread and no matter what even doing operations, chemotherapy and radiation, eating beets only, eating veggies only, stopping smoking, smoking pot, no matter what there is this 1/3 of us that wind up having it spread and if it does then no one did anything to "deserve" it.
It is chance and for me, statistics and chance are things I try to avoid thinking about. We cannot control what the future brings - for me, I just listen to my doctors, stay out of my own head and focus on today because tomorrow is promised to no one.
This is what I do in the time between...
I could go either way on this post - I can talk about the people who pretended to care and then proved they did not care OR I can continue to rise above and be positive...
Being bitchy could get me more readers sharing the dirty laundry of xyz but instead I want to be me and share the good of others - the way you know you are loved in every way not just when all is good and hunky dory.
Many things in life go wrong and there are many many pages and pages that I can write to talk about the wrong things but there are so many things that go right and a big part of what is right in my life are the people who know and love me no matter what.
I am not perfect in any way shape or form - I am a fake extrovert who is really introverted - I love to speak and share and be just me - I love to write I love to be a mom, a friend, a daughter, sister, godmother and I can handle being a wife (sometimes- kidding a little).
What I continually find to be most amazing, besides the friends and family that are in my real life, is the community I am building of people from all around the USA and the world. There are ladies in Ireland, Ohio, Australia and Brooklyn who are real friends to me though we have yet to meet in person.
There are also social media accounts that are here for me like the Compassion that Compels account and website. When my dad was at his worst, I posted a prayer request for him and me and every day sometimes every couple of days I get an email saying someone has prayed for me and I get so uplifted. When I got a phone call from the President of the organization and we chatted for days she prayed with me and over me through the phone and left me in happy tears. I also received a care package with some amazing gifts (see photo below). I was so inspired, I signed up to be a volunteer. This organization gets donations and creates amazing compassion bags for women going through treatment and if you sign up for one in the NYC area, I just might be the person who delivers it - check out their website, here www.compassionathatcompels.org. It is also free to submit a prayer request.
When my dad woke up after 7-8 days of no response in ICU (the-oh-sht-playbook-or-being-my-dads-daughter.html) and was miraculously not in need of rehab or any thing except a little company (he’s hanging out at my house), I knew a big part of it was all of the prayers I asked for and received.
I know there are many people who are not interested in prayer and religion and I get it but for me the faith that we show either through a higher power or just by getting out of bed every morning is a beautiful thing worth celebrating. As I say if we as humans could really understand risk we would never get married Or have children.
Life is hard so do what you can that makes you feel comforted and loved and do the same for others. It makes anything doable even Cancer!
I also received a care package from sharsheret.org/ on being a survivor - and that organization spent almost an hour on the phone with me and we are collaborating on an upcoming blog post. I believe again that religion and faith are a part of our lives no matter what we truly believe.
I get a few of these a day and it brightens up my day
The Compassion That Compels Package "Overcomer"
Sharsheret Booklets & Resources on Living as a Survivor
Some of my teammates - LiLi's Team - #7 in Fundraising
I was so excited to walk at the Making Strides Against Breast Cancer today!
I am so lucky that I was able to get a big team - I have so many wonderful giving and loving friends who were there with me and even more who donated to my walk. I believe in the American Cancer Society and know that with this walk and the money raised (that I helped) goes directly into services and help for my community.
There are people in your life that are there for a season or a reason - some to teach you a lesson and all that mumbo jumbo but the people in my life are the best in the west! I had so many friends new and old walking with me and a few that lagged behind but were there - these are the people who are here for me - my ride or die people. I love them each and everyone and some who were only there in spirit as times are busy for all of us.
When I got sick, I did not realize how many people I had in my corner at first. It hit me over time that some of these folks have been there for me since 1990 when I was upset about my parents divorce or my latest boyfriend and some of them are new from 2012 or 2014 but they are here for me forever and I love them all.
Of course, I cannot forget my mom - she has been there since day 1 obviously and all of this has been so hard for her. Watching me be sick and go bald and see me get stressed and get put through some unnecessary drama well, I cannot imagine as a mom what it must be like to see your kid go through it... She has been amazing and most of my friends love her like she's their idol or their friend.
Some of my besties I met through my mom way back in 1998-1999. These are just some of the people who are there for me and I hope they know I am here for them. Thank you also to all of my Facebook and LinkedIn friends and family who helped me smash my goal - as I said, this organization does so much for local folks and something like 400 women are diagnosed on Staten Island with breast cancer per year. When I took that survivor picture, I felt so in awe - I know I am not even one year out from this crappy plot twist but I feel like I am a survivor and I will do anything in my power to stay that way while praying for those who cannot be cured and those who are newly diagnosed...
Cancer is a bitch, but as we all know, I can be bitchier :)... This is what I do in the time between.
Still cannot believe I was able to raise so much $$$$ Thanks to all who donated! XOXO
LiLi's Team (Missing Some Stragglers) :)
Do you think I had on enough pink?
Team Raised SO Much - #7 out of all the teams :) LUCKY NUMBER 7
One of the pics of the "survivors" who walked - we are all survivors no matter what xoxo
I never thought I would ever share stories about my tits, my boobs, my naked body. (Check media-me-sharing-my-breast-cancer-plot-twist-and-pinktober.html and MATE.)
I never thought I would get breast cancer (what-is-your-breast-cancer-risk.html) and I have learned most of all that it is not a sign of weakness to ask for help (who-is-on-your-team.html). It is not a sign of failure when your body betrays you (an-open-letter-to-me.html).
Most importantly, I have learned that sharing my story and being so OUT THERE is weirdly enough very healing and very empowering. It is healing to me and trust me after the year I have had, I need to be healed. It also is empowering for me to hear from others who are going through it, who need to see someone who has been through it and so I let that person be me - warts and all.
I am not perfect but I am tough. I did not fear anything once I got through chemotherapy. I realized that if I am willing to do anything to stay alive, that means I need to start living. I need to let go of the shit and only keep the good. I know it sounds cliche but you have to be as positive as possible WHILE also recognizing that this sucks.
I am by nature an optimist - I am infuriatingly chipper almost every day from like birth. In high school, when I slept over my best friend's house she would threaten me with bodily harm if I continued to smile and chatter when she was still half asleep (sorry girl - decades later but you know...).
So what you see is what you get with me - I am cheerful to a fault and I do not do well with being fed bs. You either love me or you tolerate me - there is no other reaction. And now that I got the mic (thankfully I am not singing) but now that I got the mic, I do not want to stop sharing because someone out there is reading this and maybe they were just diagnosed and they are scared and afraid. I was that once, too. All of the positive attitude potention in the world goes out the window when you are told you have "cancer". It knocks you down but you cannot stay down. You have to get up, keep smiling, put that wig on, put that lipstick on and go for your own Academy Award.
Do not care about the weight or the hair or the missing boob(s) until treatment is done - than you will need hings to do in the time between as you wait to God willing be cured or to just there to be a cure - something has to give and what you have to give is just being you however that is - you are special, you are beautiful and you had cancer but cancer NEVER had you.
This is what I do in the time between...
I am still focusing on this unknown - this new me that is trying to balance and figure out my own next step after being an "expert" at helping others do this it is new for me. To be using my own skills and talents on me is bizarre.
I saw this article from NPR and it resonated with me so much www.npr.org/sections/health-shots/2014/04/30/308269057/cancer-plus-chemo-might-put-your-job-at-risk.
Chemotherapy was the biggest challenge for me. I had to stop being a "mom" - I was tired and gave all I had left to my job as a teacher. I could not be around my kids when they were sick and I was so tired and bald and just blah that it was tough to do anything beyond what I chose to do. I chose to pour whatever I had into my job and I alluded to my experiences in my open letter to myself an-open-letter-to-me.html and here, too when-god-closes-a-door-he-opens-a-window.html.
Now I am sitting here post treatment and this is the time - the time between - when you hope and pray you are cured but the God's honest truth is that we (all of us touched by this disease) just do not know. We can only plan for what is in front of us though - living with "what ifs" is just a stupid way to live.
So I stay focused and ready - I did my resume, I have my interview clothes ready and my answers to the questions are polished and ready to go. What questions you say? Well, common interview questions like these:
Potential Interview Question: "What have you been doing since your last position ended?"
Answer: "I have been focusing on finding a position that will allow me to use my strengths of communication, writing and project management - like the one at your place XX..."
Potential Interview Questions: "Why did you stop working at your last job?"
Answer: "I was laid off due to economic issues."
Legally, you know, I cannot be asked about my health during an interview - none of us who are getting back into the workforce can be asked but it is a part of our lives, a part of our career stories and sometimes we might inadvertently leave a clue or a hint as to why we now have this new perspective on life and our career. It came out during my first interview post cancer treatment last month. I am looking for something very specifically tailored to this "new me" this "post cancer" me.
My interview was with a person who knows me in real life and by default knew or heard about my illness but still I could not help but bring it up as a catalyst for change that I think I might need to include in my interviews because it provides a way to tie in the different pieces of me. From Executive to Educator to Entrepreneur to "ex" teacher - how do I make my story resonate for the right job so I can get hired and avoid being looked over because of my (past?) illness?
This is it, though, the new world is that many many people are diagnosed with cancer. We are still ready, willing and able to work. We get a raw deal (and I am never one to complain) but we give it our all during chemotherapy and guess what, that "all" is not good enough. It cannot be - by definition, chemotherapy breaks you down from inside out to kill cancer cells. I am still someone who can "take over the world" - my career path changed so drastically when I had kids I went from wanting to be CEO of a major company to wanting to be a teacher locally.
I got that local teaching job and it was the hardest job I have ever had in no small part because I was undergoing treatment for cancer during my first year as a full time grade school teacher. Also because of the amount of work all teachers have to do on a daily basis. I have this perspective of having done it and failed because I was undergoing cancer treatment but every other teacher I have either worked with or met are all super stressed and they are doing it without chemotherapy.
So for this new next step, I think I want to go back to Corporate. I think I am ready to be in a large organization and to have the ability to hit the ground slowly and then spread my wings and fly. I lost years in corporate by focusing on my family and my entrepreneurial pursuits - I definitely do not want to become a workaholic but not working leads to too much time for thinking and for most of us but particularly for people who have had been diagnosed with cancer, too much thinking is never a good thing. So here is to new beginnings and keeping busy!
I began this post with a video - it is hard for me to handle the fact that my illness impacted my kids. I also am learning the hard way that the only way I can survive is to take care of me, too. As a caregiver of so many, it can be hard to make time for myself.
My first peer support meeting will be held this Saturday and I will be posting in general about how it goes. Having children while you are diagnosed with cancer is hard but it is not impossible. I have had to adjust so many things about my parenting style and about communication with the kids. My son is more open and will talk about his stuff but my daughter is less so. I have had to learn how to manage them in different ways and also to help them understand that "cancer" is not a death sentence.
To all the moms out there or caregivers who get diagnosed with cancer, I got your back.
This is what I do in the time between...
I talk a lot about having taken many different paths in my life paths-of-life-how-plot-twists-are-really-new-paths.html and how it affected me am-i-me.html and I am considering the ways in which having experienced breast cancer and deciding to be so public about it can and will continue to affect my future.
As an unemployed person looking for my next step, I know that having been so public about this disease could make me someone who is considered a bad fit for an open job. That does not stop me, though. I will not stop sharing because I have so much to say and I know that the fact that I was a breast cancer patient is not something that really will ever be a "was" - it is and it will be something that no matter how small the risk becomes or how many years out I get will always affect ME in many ways.
Sharing on this blog has opened me up to so many people who are going through the disease and also has helped me educate those who are lucky enough to not have cancer understand what having this diagnosis means. Particularly during this month of pinktober where everything is pink and fuzzy and booby to be me, strong, tough and boobless, is an important part of why I am here writing and sharing every day this month and why I will continue to share in the future.
So that being said I am working on finding a job post cancer AND trying to share these lessons with those of you who are going through it, too. I think the most important thing is to have an awesome resume and to know how to answer interview questions. Your health information is top secret classified information and no one should be able to ask you detailed questions about your health or what if anything will happen in your future.
I am considering taking my entrepreneurial path (www.thenextstep1234.com) and turning it into a not for profit to help those who like me find their plot twist falling off a cliff with cancer. I am learning my own way now - as I go for interviews with my uber pixie cut and my fake boob attached to my bra and as I manage other side effects (but still smiling) plus the overwhelming piece of "what if?" I still have to rock it and hopefully will be posting more about lessons for those of you also in my shoes. Keeping busy and being a productive member of society are key for me to feel truly "back".
So this is what I do in the time between... Stay posted as I continue to balance being a mom, cancer (soon to be) survivor, unemployed, once entrepreneur ex teacher ex educator -- or just Lisa for short...
I was asked by Andrea Falls, who is working with the American Red Cross and Popular Genius, if I would be willing to help advocate for platelet donations and I was thrilled to help share my voice. I wanted to start this a few weeks ago but as most of you who follow me on Insta know (and if you do not follow me, why not? I am @thetimebetweenis) my dad went in for a “simple” open heart surgery to correct a valve prolapse and wound up being unconscious for almost 9 days; I also blogged about it here .the-oh-sht-playbook-or-being-my-dads-daughter.html.
In that time, I was slammed and unable to really focus on anything beyond my own blogging (which to me is really just being open and sharing my journal with all of you) and my advocacy to help people remember to do their mammograms and such - like this post: i-am-a-know-your-boobs-advocate.html.
While dad was in the hospital, ironically, he needed a platelet infusion! I could not believe how my I guess "advocacy" work was tying in to my real life. Then I remembered that as a cancer patient, I came close to needed a platelet infusion myself. How did I forget? Ladies and gentlemen, welcome to "chemo brain" - when things become foggy and you struggle to remember certain stuff that used to be like snap in your mind no problem.
I will take you back now to March 29, 2017, when I went in for what was to be my 6th chemotherapy (4 AC were done; this was to be my 2nd Taxol). Early in the am I took a bunch of steroid pills and then a few hours before my scheduled infusion, I took the other half. In spite of being all ready to get the chemo mentally I was turned away because my platelets were too low.
At the time, it was really one of the worst things that could have happened to me at that moment. I had my wall count of days showcasing how many days of chemo I had left and having to ADD to that wall count was so hard. My kids could not wait for me to be “back” and they knew I would not be “back” until chemo was over.
My "Chemo Wall" of sticky notes - taken after I had to ADD days back on which was at the time so terrible
More About Platelet Donation and #Sleevesupforbreastcancer
I worried and worked hard to raise my counts using these web resources (as in Googling, "How do I raise my platelet count") and eating lots of meat and greens. When I went back on Monday, my counts were great and I could have the chemotherapy and it was like the best day ever and I learned to just smile and be so happy for each session; if I could get the drugs I was that much closer to being done.
If my counts had not gone up I probably would have needed a platelet infusion. I see lots of my social media friends share about their platelet infusions and how important that are to help them stay healthy enough for chemotherapy or just healthy in general.
Platelets are used within 5 days; after that, they go bad. This is different than the regular blood donations and are collected differently than a blood donation, too. I am including some information about how it is done below. If you are willing and able, please consider donating platelets for those of us who might need them - cancer patients, surgery patients and other injured or ill people. Follow my social media for more about #sleevesupforbreastcancer - but remember these platelets can be used for many sick or ill people.
I am focusing on breast cancer patients because hello I am one but as it happened with my dad it is also for our loved ones who don’t have cancer but need platelets to get stabilized. This is what I do in the time between....