The Time Between Is
I am focusing each day on practicing gratitude. I am keeping a journal to jot down a few things each day that have made me happy that day. I am doing this at night to go to sleep with happy thoughts.
Each day in my gratitude journal I write that I am healthy and cancer free. Do I know this is true? No, not really. Do I believe this is true, yes and I will unless God forbid I am told otherwise.
I try to think this way every day but some days, it is hard. Some days, I get a headache that lasts too long and I think, "Oh shit." Some days I get back aches and/or other weird pains and think, "Oh shit."
Sometimes, someone stops to ask me about my experiences, someone who is an acquaintance and means well and I tell my story and for a bit afterwards, I think about how I am a G#D-D@mned super hero that I am cured and still standing and kicking ass and all that - then about an hour later, I am thinking, "Damn, that person does not have cancer, never had cancer, and wow I am sick and so unlucky and blah, blah, blah...."
I do my best to just shake it off, though, and continue thinking positively, not because it will cure me but it sure as hell can't kill me.
On another note, I am at goal weight and have stayed there since mid-November the-weight-of-a-breast.html . I weigh what I did in high school people (137 pounds). Way back when I weighed this amount last, I thought I was HUGE and OVERWEIGHT because I was a typical insane teenager (and I quiver with fear thinking about how soon my kids will be teenagers and think these crazy things but I also look forward to it and plan to be here for it and if I complain then, hit me and remind me how I had / have cancer and shouldn't complain lol).
This is my routine/eating style post integrative medicine doctor meeting at Sloan (integrative-medicine-clinical-trials.html) that led me on the 10 day green smoothie challenge that I believe kick started my metabolism and also taught me how much food I need to eat vs how much I "wanted" to eat.
For instance, pre challenge, for breakfast I used to have a full smoothie with kale, spinach, fruits and water AND a yogurt with granola with dark chocolate and now I just have the smoothie. I am full and not at all hungry and cannot believe how much extra I was eating before versus now.
I eat breakfast 13 hours after I had my dinner; this is some kind of intermittent fasting process that is supposedly good for your body.**
After breakfast, I have my green tea - 2 cups of it, usually in a to go container so I can drink it on the road. A few hours later, I have snacks with me ready to go. I have ziploc bags with apples, unsalted nuts, almonds and rice cakes. Yes, rice cakes. Some people think they taste like cardboard but I love them. I use the whole grain sea salt ones. They are delicious.
For lunch, I have salad or a smoothie or a 1/2 of sandwich (meaning, I go to the deli and get a wrap and it is the size of my ARM so I cut it in half and save it for the next day's lunch). Between lunch and dinner, I have more nuts and fruit again. Dinner is whatever my family eats but we are all trying to eat "clean". I also have like 3 days a week oven roasted veggies to snack on throughout the day, too.
During the day, I am also moving and grooving usually doing at least 10k steps a day with 4k of them as a cardio workout.
As part of my de-stress routine, I listen in the morning to my hypnosis app by Seth Deborah called "Victory over cancer" and I meditate as well. I also pray and think about all of the things I am grateful for, as I mentioned in the beginning of this post.
This is how I try to stay sane and focused and grounded. I cannot worry or wonder every day about what is going on inside my body so instead I smile and zen myself into oblivion while job searching, taking care of the house, kids and puppy oh and husband oh and my dad, too. Can't wait to find that job! Oh and of course, updating this blog and sharing my story, in the time between....
**I am not a doctor so please check all of this information out with your medical team before following along with me.**
I want to help others who are faced with the plot twist of cancer and I want to help them the only way I know how - to get them back to work. Right now, I am focused on doing this for myself and it is an all consuming focus. I have finally redone my OWN resume - see it here --> how-to-take-the-next-step-after-cancer.html after spending decades helping others get resume ready through my old small business www.thenextstep1234.com. This resume makeover and help on how to interview are big parts of my "talents" that I was writing about a few weeks ago using-your-talents.html.
To do this, I need to figure out more about the specifics. I mean helping people get back to work is a huge positive especially after I have been learning more and more about people who have lost their jobs during or after diagnosis/treatment - you can read my unfiltered thoughts on that here --> www.whatnext.com/blog/posts/after-cancer-treatment-how-do-i-get-back-to-being-me,
Not having a job means you do not feel "whole" yet. It means you do not have the necessary distraction from thinking about cancer and death. Most importantly, it means you have financial issues to pay your bills or to have healthcare or to afford your medication. It is a big deal.
I also want to think about how I can use funds that I can perhaps raise to do something for others or for research in addition to this skill I have in my tool house. I am not yet sure how it will come together. It is a priority to me and it is why I upgraded my URL via Weebly from www.thetimebetweenis.weebly.com to www.thetimebetweenis.org and also got the ability to use more programming options for this blog, too. I am looking at different ways to pay homage and to help others.
On a related note regarding the fact that I am currently unemployed, I am still trying not to get triggered when I hear of someone dying from breast cancer. I am trying so damn hard; today I just spoke to a friend of the family whose 47 year old sister just died from breast cancer after an 8 year fight - you do the math, as I did - she was 39 at diagnosis; so was I. It is times like these that I get down and want to cry but I know that will not help and I know that although it does statistically maybe look worse for me that it could happen to anyone and it does happen to anyone - random deaths happen all the time, it is part of what keeps newspapers in business.
All of this pushes me to get busier, because if I stay focused on busy, I have less time to think. Thinking is never good. I was an over thinker in the past and it was never "good". It is especially not "good" now. So I am going to throw myself into a couple of projects to keep myself occupied and therefore out of trouble. They are:
So it is time for me to work on these things and get into gear. Of course, I will always blog - well as long as it continues to connect me to my community, to help me grieve, celebrate, unload and move my needle back to "full" when I am on "empty". It has led to amazing friendships and to different opportunities to share my story (check out my Press & Promotion Page --> www.thetimebetweenis.org/my-story-in-the-press.html.
As always, thanks for reading and especially for reaching out and/or sharing my story. I hope one day this story is just that a fiction that we remember having once existed that "cancer" is eradicated and no longer a mystery to those who die from it.
To my (new) friend's sister, I know you are no longer in pain and that you are at peace. Please help the other women and men who have been dealt the plot twist of breast cancer with your prayers and I will pray for you, too.
I shared this on Insta already (@thetimebetweenis) but wanted to give it it's own post here on my blog.
When you are THE MOM the uber mom who does everything for your family, your kids and maybe sometimes yourself (barely), it is so hard for your kids to see you have to stop, have to slow down. For a kid to learn their parent is "sick" and has "cancer" is really scary - I talk a little about being a parent and a kid in situations where the mom got knocked down here --> a-tale-of-two-novembers.html but there is more to it than even that.
I am a writer and it is how I process things since 1986 (my first diary). My children are also kind of expressive in either art, music and/or writing (they are a mix). I sat with my oldest and created this children's book using an app on my iPhone called LittleStoryCreator and put this together using some personal pictures and our story.
If I do decide to do something with this book, in the hopes of helping other children who are going through watching their mom or caregiver deal with cancer, it will be set up to donate the proceeds to a charity that can physically also help these children.
During chemo, I wished for a camp where my kids could live and be cared for and kind of distracted so they would not see me on the couch looking dull and lifeless so they would not realize all of the things I had to miss and not go to because I just could not swing it and for fear of getting sicker. I also did not want them to see me go bald and to see me look so tired. In a way, now I am glad they saw it because I want them to remember that sometimes we fall down and we get hit with things we did not plan for, expect or want but we have to survive, we have to pick ourselves up, put our wigs on and get out there and do what we have to do to make it, to get to the other side.
I hope and pray every day that 1) they never have to go through anything like this and 2) that I am fully on the other side and done with it. No matter what, though, we know we survived and we did it as a family. This book, this story, tells that from the perspective of a 6 and 9 year old who's first and only question upon hearing I had cancer was, "Are you going to die?"
Let me know your thoughts about the little snippet up above and if you want to see or hear more, let me know. This is what I do in the time between.
It is true I am more buoyant even with one boob. I spend a lot of time trying to re-condition my brain and my I guess reptilian ways. I used to be the person who would hold a grudge, replay the day and who said what when and what I should have said would keep me up at night.
Now, I am actively trying each and every damn day to just continue to rise above. To not fall for the pettiness, the silliness, the stupidity when I can just enjoy my life every damn day - NO MATTER WHAT.
This is a big thing, this "no matter what". It means when another mom says something I consider 'unkind' to my kid, I have to just let it go. It means when someone is not as nice to me as I think I am to them, I have to just let it go. It means that when family members are acting a fool (collectively), I have to just let it go.
It is harder to do than I am making it sound. It can hurt when someone you think is in your "crew" shows that they are not. It can be hard when a relationship dynamic changes from being girlfriends to being just like "hey" and man when I was younger these are the things that made me crazy.
I know now that not everyone has to like me. I know now that I don't have to like everyone. I also know that I am not here for big vendettas and clearing the air because I want to live above the air. I am in my space, my world where last year the ability to do what I did this weekend (and every weekend since chemotherapy ended just over 7 months ago) seemed like a miracle, a dream, something I would never be able to do again. But yet, I am doing it.
I am kicking ass and taking names in terms of my life, my health and how I want my world to be. I am job hunting, I am focused on being the good for those who are good for me. I am focused on my kids and family but I am totally now down to taking care of ME first and getting away, doing things with the girls, my girls.
As I posted on Instagram (see below), I lived through what remains in most people's bad dreams. I am a monster high doll with scars and things where my breast used to be. I am here to live and enjoy, to work and do what I can with the time I have left as we ALL have only so much time left because no one has lived forever in this world. I am prayful and fun, focused and relaxed. I am me, I am proud and I am the 1 in 8.
This is what I do in the time between...
What I posted on Instagram about December 2017 vs 2016; follow me @thetimebetweenis or on Twitter @timebetweenis
I have always loved December. It is my birth month, after all, and the holidays and even getting only one gift as a kid instead of two since birthday was so close to Christmas was not enough to ruin it. I also met my husband in December and sometimes that is something I celebrate and sometimes.... welll.....just kidding - at the end of the day, as I wrote here on this blog, he is a good man and I am lucky to have met him in-sickness-and-in-health.html.
Now, of course, after my breast cancer plot twist, I have even more reason to be in love with December. My birthday is December 13th and on that day last year, my big 4-0 birthday, I was getting a pet scan, which I found out the next day was all clear (best birthday gift ever) and then three days later, I had my surgery.
After the operation, when I was snoozing off the anesthesia, my surgeon called my husband and told him, "All of the cancer is gone; I removed all of it." I guess now December 16th is the day of my re-birth. I will NEVER thank cancer but without it, I would not have become this improved version of me that I am today.
In the past, I worried about everything. I was not truly happy in my life no matter what. I would focus on the negatives and be so stressed and tired and not give a shit about taking care of me. I was the LAST person on the list for anything in my mind. I judged other people for taking care of themselves and for that, my silent judging, I am sorry. I held myself up to a standard that did not exist as I wrote about in my Open Letter to me an-open-letter-to-me.html.
I wrote about my PTSD and all of the medical tests I subjected myself to recently all-about-the-ptsd-post-breast-cancer.html and wanted to update that on December 1, I got my final report back for the endoscopy and everything that was biopsied was benign! I spent time worrying over those 3 weeks of waiting but nothing near to what I would have done before I walked the walk of a breast cancer patient. I did not let it take my joy, I did not let it take my sleep and I did not let it take my peace.
This month, I go and see my surgeon on the anniversary date of when my husband and I met. We went 16 years ago now on a Thursday night in December that feels like a lifetime ago. He was still on the job and working 12-24 hour shifts down at "ground zero" as we met the December after 9/11. We made it work, somehow, and next year is our 13th year of marriage. So on 12/21 when we are at Sloan for my mammogram, ultrasound of the remaining breast and my follow up with the surgeon on the mastectomy site.
Instead of worrying about these upcoming tests and visits, I am instead going to focus on the job - the joy of being "cancer free" at least as far as I know :) and I want to keep it that way. Last year at this time, I was not cancer free and it really put everything in perspective.
I am still here, I am standing and this is what I do in the time between. I also decided as an early birthday gift to myself of upgrading my Weebly website to streamline the URL to just www.thetimebetweenis.org and also to add in the Search bar (really for me so I can find stuff easily...
Happy December to all of you - I wish you peace and happiness always and great health!
This month is my cancerversary --> its-my-cancerversary.html and for some strange mental reason, I decided to do a bunch of medical shit this month and I am really regretting it and recognizing how I had no idea how deep my PTSD goes after living through a real medical diagnosis and hoping and praying to stay healthy.
So just this month, I did the following:
I am doing the best I can to not think doom and gloom. I know deep down that my thoughts cannot change the results so why should I beat myself up and ruin my holiday season on the unknown. Until it is known, I can keep focusing on being "cured" or NED of being me of being free.
I shared my PTSD on instagram and so many people commiserated and knew what I was talking about (consider following me there @thetimebetweeenis or on twitter @timebetweenis - I am sharing it here with more detail to hopefully help someone else as they learn to navigate this new world in the time between...
I wrote all about being told the day after my last chemotherapy treatment that I would not have a job for the next academic year... I am not alone in losing a job during or after cancer treatment and I hope by being open about what happened to me, it can help others going through it.
I wrote something that is pretty raw, something I tried to glaze over in my Open Letter Blog Post here an-open-letter-to-me.html but found there was more to say about the whole being in active treatment as a breast cancer patient and being told the day after my last chemotherapy that I did not have a job for the following academic year (teacher).
I shared more detail on how this made me feel and how I am shaking it off and moving on to bigger and better things. I have found through this plot twist that I am not the only person this has happened to; in fact many people have reached out to me about losing their jobs or having to leave their jobs due to the affects of cancer.
I hope to move forward on finding a way to help people manage this time in their lives, these blank spaces on their resumes. (And wow, I just realized I have TWO Taylor Swift song references in this post...can you tell I have a preteen daughter?).
If there are any other blogs or websites that would like to have me write something for them, please reach out at email@example.com or find out more at media-me-sharing-my-breast-cancer-plot-twist-and-pinktober.html and here what-it-means-to-say-you-beat-cancer-media-portrayal-of-cancer.html. Please make sure you also check out the article posted below and share away from the What's Next Blog. Thanks! This is what I do in the time between....
365 days ago, I heard the words, "expect the call that is is cancer." - not quite as clean as the more direct, "You have cancer." but it was the first inkling I got that this whole mammogram/ultrasound/biopsy routine was going to be different for me than my usual experiences in the medical realm.
Normally, when I went to doctors and such, I would find out something minor - like the flu, bronchitis, allergy induced asthma or even my blood clotting disorder managing-diagnosis-from-super-woman-to-cancer-patient-in-two-seconds-flat.html. This was something that was more, I guess you can say, earth shattering.
I set up a countdown to this date (because I am a nerd) about 80 days ago. I know that time is what heals or it is what can kill me - you see, when I was first diagnosed I knew nothing about breast cancer and I remained blissfully ignorant for a long time. I remember being triggered by a Facebook post about someone who had died from the disease and it shook me so much I deactivated my account and did not go back until I grew a pair of balls - a new pair of balls that is because in my life I have always been pretty ballsy.
I left the country when I was 21 after being raised to "stay in the gate" by an uber-overprotective dad and grandparents. My mom left the family when I was 13 and almost died when I was 15. I got married despite knowing all I knew about how marriages can suck. I had two children despite helping raise my brothers and knowing that being a parent is one of those things that just does not make sense - my heart no longer resides in my body and all that crap. I present and speak in front of large crowds. I have written books and share them relentlessly because damn, I wrote stuff. None of that mattered though because when I was diagnosed, those reserves of bravery were like puffs of air, they were gone.
Sure some of those things are just normal things that everyone does but for me, they were all acts of bravery of defiance of being balls to the wall brave. Then I got diagnosed with cancer and all I knew was fear and more fear. I could not share my story - I was physically unable to do it. There was a block and it was me.
Once I began sharing, I began learning. I opened my heart and mind to others who have been through this plot twist and learned the hard way that some of them do not make it on-mourning-forbeth.html. Some of them do not get to see their kids grow up. Some of them do not get to even get to the point where they want to have kids. Some of them will never be able to have kids because of their treatments. Everyone has a story and it is not always a happy ending.
I was focused on getting to this year's "cancerversary" because in my heart, it means something. It means that I survived this year, this year when everything changed, when I could not be me, when I lost my hair, my breast, my job, my voice. I survived it and I am still here - I am loud and obnoxious, I use social media, I tweet too much, I post naked photos of my chest, I am here, I am trying to make sense of it all but I do not have all of the answers. No one does. I do not have a crystal ball. I have no clue what the future brings for me or my friends who find themselves to be the 1 in 8 but I do now that sharing and celebrating this tiny little achievement with all of you means something to me.
I was diagnosed a year ago, I went through diagnosis, surgery, chemotherapy, radiation and continued treatments (hormone meds and clinical trial); I went bald, I stayed half flat, I lost my job, I saw what my children went through to see their mom "sick" - really sick; I know what it is like to fear/plan for death, I pray every day that I am here to see my kids grow up, I know that breast cancer can still kill me but I pray and hope that it will not.
I celebrate because it was a year ago, time is passing, I am still here, I share my story and it DOES help others, people are in my life now I never would have met if I did not get cancer, I know more about how to manage life stresses because nothing is as bad as being told you have cancer (God willing, this will be the worst thing that happens in my life; it is not as bad at all as hearing your child God forbid has cancer so I will keep my diagnosis, thank you very much and pray for the families who have to deal with a child getting chemotherapy).
This is what I do in the time between. I originally had wanted to do something big today with decorated cookies and a celebration but instead, I am going to do the exact opposite. I am just going to live like I do every day since those words were told to me - I am going to survive and enjoy my day with my family and just decorate for the holidays knowing and believing there is no cancer in my body. Last year at this time, I could not say that and all of a sudden everything else was in perspective. So, this year, decorating my house without cancer in my body and going to focus on all that I have done in these 365 days and on what I can do today because that is all anyone is "promised" is today.
It is so damn hard to be "woken" up to this world of breast cancer in so many ways. Not just because of the knowledge that life is really short but also because it becomes clear that you are not immortal - that there could be a day when you die from this disease before your "time". No one knows what their "time" is but I guess we always think, pre-cancer, that it is really really far away and not even something to think about because what are the chances that it will happen "soon"?
And what does "soon" mean, anyway? I mean, it is just not something you spend too much time thinking about when balancing life with kids, house, family, jobs, stress of all kinds and even a puppy. And then BAM, you are diagnosed with an illness that could, in theory, be deadly. The dreaded "c" word and no one understands and knows what it is even after surgery, after treatment, after the whole 9-yards, there are still always countless yards to go because end of story is no one knows BUT it could always be worse.
In my opinion, "worse" is to be diagnosed Stage IV from the get-go and it was something I was panicked about, without knowing the correct terms or what it really meant, when I was diagnosed last year. I was so afraid that it had spread, that it was elsewhere in my body that I asked for a pet-scan. I wrote about it before on my blog and the greatest gift I got at that time when everything was so terrible was that I had no signs of cancer anywhere else in my body (or at least not from head to knees).
I think every day about those who were diagnosed Stage IV either first thing or after years in which they thought the cancer was "gone" - being Stage IV means that they will be undergoing treatment for the rest of their lives, that their lives will be ending sooner than they thought full stop as most people do not survive many years with Stage IV, and a lot more of terrible stuff - most importantly is that research dollars do not go to Stage IV.
I am a newbie at this but I am trying to fill the void left by the death of my "friend", Beth Caldwell. I put "friend" in quotes because although I feel she was my friend, in reality, we never met. We never spoke on the phone. We never heard the sound of each other's voice in real time but we connected on social media. I was in awe of what she was doing as a founder of MetUp (metup.org/) as someone, just about my age who was diagnosed as Stage IV at the beginning of her plot twist and she did so much for the community, even for a newbie like me.
It is hard enough to deal with loss but this kind of loss is something that is hard to share, hard to deal with because who can understand that what I mean when I say "friend" - it is something most people who have never dealt with a potential life threatening illness maybe cannot quite understand. I feel her loss, the community feels her loss and we grieve it. We think about what we can do to fill the void.
As most of my blog readers know, I am unemployed right now but when I saw Beth's husband sharing on social media about her death and the organization she helped to fund research for to help others with Stage IV, I donated and set up a small recurring donation in the amount of $10. For those of us who are "early stagers", please understand that 1/3 of us do still run the risk of being diagnosed with Stage IV cancer no matter how pink and fluffy we were during treatment. This shit can still come back and recent research has shown it can even come back 15, 20 years or more later and God forbid it can kill us still. The link to donate in her name is below. When you donate, her family gets cards showing it was done and it is something to make her life be not in vain.
For her children and husband, my heart breaks and I think there but for the grace of God do I go - it could happen to any one of us it could even not be cancer but something else some freak accident but for those of us who have been touched by cancer, we always think it could be cancer.
Beth already inspired me to write one other post about being a mom and having cancer but this post is the most important one for me to write for Beth; do what you can, give what you can to help make breast cancer less of a potential death sentence. To help Stage IV because they "need more".
This is what I do in the time between.
*Read more about Beth here, www.fredhutch.org/en/news/center-news/2017/11/beth-caldwell-impact-metastatic-breast-cancer.html.
Last year, on the day after thanksgiving, I went for my biopsy of the lump my screening mammogram had found, thinking it was just a waste of time and that in my heart of heart it would be benign because how could it not be? I had no history, no lump and no risk factors. The "lump" that was to be biopsied was so small it did not even register during self exams. It was like a small thing, what could it be but the need for me to listen to my doctors and wake up early on a much needed day off from my full time job to go and get this procedure done...
Ha. How wrong I was. That day, the surgeon doing the biopsy told me to expect the call to confirm that it was cancer - she knew by looking at it that it was cancer but would of course tell me to wait for the official word. She did not want me to be shocked when I got the call that Tuesday after Thanksgiving. So I had some time to let the "diagnosis" ruminate before I knew for sure but I just did not even believe her. I was sure it was a mistake but by Tuesday, when the call came in, I knew it was gospel truth.
I spent a year basically in treatment and/or recovering from treatment and as I get closer to my cancerversary, I want to share this video about all that I, yes me, cancer patient, pixied cut, one boobed Lisa, has to be thankful for in my life.
I know that my life will never be the same but you know what, I do not know how much I had before that was "better" - I mean, yes hands down I was healthier but I was not happier. Life is about being happy. It is about giving back. It is about helping others. I have said it before, and I will say it again, I would prefer to have never gotten the cancer card but I got it and now I have to make the best of it -- and damnit, I am ... Check out my video please and continue to share and be a part of my story in any way you want to be - I am so so thankful for each of you! Happy and blessed Thanksgiving to all! Love you, Li
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