Today is my first "Cancer Survivor Day" - last year on this day, I was still hiding out under my covers going to radiation and pretending like I did not have a story to tell and now here I am, a year later, living this day and dreading it and also focusing on the word "survivor" and despite knowing I could make this post ALL ABOUT my nonprofit initiative and what I can do to help people embrace their survivor life with work training and resume help and whatever, I won't.
(Well, in a way I did because I am a marketing person through and through but it was just an intro - here's the meat of the story).
Sometimes, when I am walking around perpetually smiling and thankful that I am still alive because YES I am a super smile-y happy kind of person now inside and out - before just on the outside ... well while doing this, sometimes, it hits me that there are people all around me that:
A- have no clue I was ever so sick that this was in question and
B-have never experienced "cancer" or an illness that could lead to them wondering these things chief among them the kneejerk"why me..." question.
In the beginning, I thought this way entirely TOO OFTEN to sustain life - I trained my brain to not think this way and to just change my life motto from "things happen for a reason" to "it could always be worse". Inside, I do not think I got cancer for a reason - there is no reason for ANYONE to get cancer. Despite that fact, more and more people of all ages are being diagnosed and either embracing this day or hiding under the covers as I did last year.
Cancer is something that once you have it, you ALWAYS have it - either in the front of your mind in fear or way back in a back file cabinet ready to jump out on a moment's notice. So, I have a headache - is it nothing or is it cancer? So I have a back ache - is it nothing or is it cancer? Cancer is one of the most insidious of diseases - you do not have a clue that it is there sometimes until BAM it is too late. For all of my times that I struggled with this diagnosis, I always was HAPPY that I found it before it had become WORSE.
That does not change the fact that despite my focus on wellness and being in the moment, sometimes, it hits me that I went from a spec on my mammogram in April 2016 to Stage 3A high grade, fast moving cancer by November 2016 with no lump, no family history and no capacity to manage being a cancer patient. I am so lucky it did not spread to my brain, bones, or vital organs. I also know that I have to stay lucky for the rest of my life for it not to rear up and do so - 1 in 8 women are diagnosed with breast cancer and 1 in 3 of those women will become metastatic where the cancer spreads and ultimately die from it or beat the "stats" of 3 years survival rate and live 5, 10, 15, 20 or more years but always in treatment and trying to stay HERE.
I have written in the past how in the blink of an eye you go from worrying about every little thing in your life to realizing just how fucking little those things were and wondering why did you ever spend a moment thinking about them. It happens that fast. And it does not go away - and I embrace THIS as a good thing on this Survivor Sunday. I even have "do I give a f&%k test" that I will write about soon but it focuses on "does this have the capacity to kill me" Y/N if Y worry if N fuck it.
Of course, a really good thing (the best thing even) would be for cancer to be eradicated, cured and that each of us still living in this time between would know that we are GOOD CURED and not worry about the "what ifs".
I mitigate my "what ifs" in a way I never knew before - and a way I could never have done before. My old "what ifs" were the rigid constructs around which I built my life. My rules and living methods were stricter than strict and I could not draw outside of the lines.
My new way of mitigating risks is to just fucking embrace them. Who knows what tomorrow will bring - today I will do what I need to do to "survive". And if that means pouring my soul into my current day and spending it loving my kids (even my husband) and trying to build my nonprofit initiative and working on my small business on the side and NOT thinking about cancer and how fast it enveloped my life, my breast and my lymph nodes well then SO BE IT.
I wish you peace on this day of "cancer survivors" and I hope you feel it in your bones and in your heart. To those of you who have never heard the words, "You have cancer..." you also never learned that the small things are everywhere and worried about and for that I pity you. Ironic, right?
I am sure you pity me - thinking about how I had cancer and maybe you do not understand the disease and you are happy in that and you assume I beat it and why do I continually live it by sharing and talking about it and basing my life on helping others with it... Well, it is what it is. This is me, one boob and all.
I was diagnosed at 39 years old - making me not only the first in my family with cancer but also the dreaded "young" cancer moniker. I do not focus on the negative I spend each day doing
I have been "busy" but also decided to be "unplugged" this Memorial Day Weekend.
Well, as much as I love social media (and I really do) it can be all consuming. It can be the constant itch to check to see who looked at your stuff, who commented on your stuff and whose stuff you can see and love...
And I do love it - it is a lifeline for me to connect with so many women (and men) who have been through cancer or are going through cancer or love someone going through cancer, whatever their story may be...
I love sharing my story but have had issues making time for blogging because I have been go go go on the nonprofit me (see more here- nonprofit-methe-plan-to-help-others.html) but again, I am drawn back to writing my secrets, my worries and letting them go here...
Despite "disconnecting" this weekend (I did pop on and off here and there) I did spend time redesigning my website and sharing a little bit about the newest book I wrote (a workbook to get back to work after cancer - learn more about my books for #careeraftercancer here - Books & Workbooks). Oh and here I am on Sunday posting to my blog - but this is my therapy, my time to be alone with my thoughts.
And my thoughts are jumbled these last few days. I saw a family member who had been estranged and I was not happy with what I saw and it sent me for a loop - to the point that I had to go to bed like immediately after the visit.
That is the real crazy thing about life after cancer - you feel things more or maybe it is just that you admit things more to yourself - I have trouble figuring out which it is for me. I find myself being tired and going to rest - I know I was always tired but I never went to rest. I am learning how to say, "No" and I say it a lot. I am learning to let go and letting things just fall where they will instead of being the control freak, mom of ALL I surveyed that I was...
That is just it, you know - as a mom, you always have people to take care of - but they are usually little people and then as they grow your parenting changes with their needs and their wants or whatever. I know that I was not changing or letting go until I got cancer - but despite that diagnosis and the healing from the treatments and so on and so forth, I still have this "inkling" to parent the big people I was parenting - and there were a lot of them.
I was faced with something yesterday that normally, I would then have taken control and tried to fix and or manage the people around it to do it and how to do it and yes, controlling is something I am ... Instead, I recognized how much it bothered me, I respected that feeling but I unwrapped my grip on trying to fix it to get it better or to take it on myself.
In doing that, I recognized that my priority, my responsibility, is to my own health and the health and well being of those I am only responsible for - my kids and by default my husband, too. I do not like to group him in with the kids in a bad way but he is in ways like a kid - he is trusting and in need of direction lol ...
So is it just me or do you guys too find that things you once did or tackled or took on are now as impossible as flying? I look back at what I used to do like
-how I never went to bed until everyone in my house was asleep
-how I managed the lives of me and my family to precision detail
-how I managed to work part time / full time / as entrepreneur and teacher and more all while just smiling and thinking about inside how much I was going crazy or how much anxiety I had or how much I feared.
Now, I know I can only handle so much and I pick my battles - because I feel things harder now - if my husband and I have an argument, it bothers me so deeply - trust our entire marriage was an argument before and it never stopped me ... now, I have to make things right - or work with him instead of around him to get things together done instead of always being a lone wolf...
If I argue or disagree with someone else, instead of being like "Basta" and cutting them out, I now try to find the middle ground. I have learned I guess how short life is and how I want to live it - on my terms. I do not in any way let people walk all over me - the exact opposite, in fact - in that I do not walk all over myself anymore. I recognize that I am a person who has to be respected and cared for and loved by ME first and foremost.
Anyone else with me? This is what I do (and think about) in the time between...
As I prepare for mother’s day - well, yes, we mothers prepare for our own holidays (we get it) lol. We have to clean the house and organize the events and make sure all of the other mothers are getting cards and/or gifts from the family (read: husband and kids) and more.
As I am getting these things "done", I cannot help but think about all of my past mother’s days and the different ways I focused on all of the wrong things, year after year after year and to forgive myself for it.
When my daughter was born in 2007, I was on maternity leave for 10+ weeks and during that time, I felt (as I guess most of us new mothers do) like I ceased to exist. For most women, maybe, this feeling passes or gets less with time but for me, it did not. I continued to feel as though what ever I needed was not even on the list of things "to do".
I worked full time in NYC and made a big salary and I hated leaving her but I also enjoyed a bit of pretending to be able to attend to my own needs at work for a few hours… but then, things got bad.
My husband got sick and by that first mother’s day, I was just clinging on and hoping, praying for a day where keeping my daughter ALIVE did not rely on me. (And yes, it felt that dramatic - there is no, “the baby will tend to herself” and at the time, I had no help officially available to me beyond certain set times…) I just wanted a day to sleep in - it seemed like such a luxury - to sleep uninterrupted without having to get up and do something for the baby, who I loved more than life itself but my body and mind wanted just one day. One day.
Reader, I did not get it that one day. It seems laughable now but at the time and in coming years, I continually held out hope that that random Sunday in May would be the day I could rest and be "me" without having to run around like a lunatic but eventually, I embraced it and I could see no other way to be so even that one day was not one for me to take off but to keep going …
My first Mother's Day 2008
I took this to the extreme even if help did become available, I was not interested in it. I had become a one woman machine - getting diapers, bottles and whatnot - toilet training, removing the bottle, nutrition, activities, homework, etc etc. I was a dynamo. People marveled to my face, “I do not know how you do it.” To my behind probably something more like, “That woman is a control freak!”
I was in this pattern and ready to continue on it - did not anticipate where I could let go or how. I had no clue. I was a bad friend and definitely someone who was not the best of “support” when it comes to my husband but he also had his demons and issues, towards me… So we can call it a draw.
Then, bam, I was hit with cancer. How in the world would I be able to keep doing what I was doing the soup to nuts of everything with my kids and work full time and survive? The main question I had was on surviving. I struggled with what hospital to go to, mainly because of the kids and my own fear of traffic.
Ultimately, I learned slowly and painfully that the old way was dead. That in order to survive, in order to truly live, I had to let go of being the control freak worry wart mother who did not allow sleepovers or play dates where I could not be present (omg, I hated that version of me but at the time it was all I knew how to be so I forgive that version of me and love her again)...
It helped immensely that my kids WERE 6 and 9 when I was diagnosed and not 2 and 5, though it was still hard for them (and me) and it continues to be hard for them to adjust to this new normal, too (and of course, me, too though it should go without saying - this new normal is one you have to adjust to each day, and it is different each day, too). I say all the time that it is not just the patient who gets cancer but the whole family - friends, too as most of them are close as family…
So on the eve of this Mother’s Day, I think to myself, “the kids are all right” part prayer and part belief in it and most importantly, or just as importantly, I am, too.
I have big ideas for the rest of this year and next - I hesitate to say, "plans" because the truth is we never know what the future holds but I have my ideas... I want to focus on my nonprofit 501(c)(3) career after cancer initiative - I want to travel and spread my training and books around the country and maybe beyond. I have so many stories to tell in my fiction writing, even beyond my first publication in the Visible Ink anthology.
I want to spend time with my kids and family, too - first and foremost and I am going to go easier on myself in terms of my “deadlines” and “planning” as though I am a project manager and this organization is my baby, my project but my kids are on the list, too. And every day, they get a bit older... pretty soon, they will be more and more independent and I know I will miss these days.
But, the big news for me personally and spiritually is my trip in February 2019 back to my second home, Rome. The home I left 20 years ago. Where I grew up. But listen, do not tell my kids yet - they do not know! It’s a trip I am taking without them.
I am not just going to Rome but also to see San Giovanni Rotondo, where Padre Pio is - I feel as though I am being called to go and so I am going. More on that in another post. This is what I do in the time between.
Slideshow of Mother's Day Past :)
PS: Happy Mother's Day to my golden girls in Heaven and of course to my mom who always has my back and yells at me only sometimes and to my mother in law, too, who also has my back. I am a lucky girl & my kids are lucky grandkids!
So the last post got me thinking about the link (if it exists) between childhood trauma and illness. I do NOT blame myself for getting sick - never have and never will. I know there is nothing I could have done differently or can do differently to have changed the fact that I got diagnosed with cancer at 39 years old.
All I can do is move forward with the confidence, the belief that I am “cured” - there is no other way to live or as I put it in my insta stories (why aren't you following me yet?):
I hate to blame parents for anything - I know there are some shite parents out there but really, I was not neglected or beaten or abused. I did however understand too much at too young of an age and really did believe it was my “job” to fix things - I wrote a little about my childhood here but the fact is that I was an adult in a little kid’s body from about 9 years old. I took responsibility for my brothers and also tried to help my parent’s marriage and more. I did not cook or clean, but everything else was on my shoulders.
When I think back of it, now having kids around that age who are going through something as traumatic in a way as I did watching my parents marriage crumble and moving around so much and not having a pot to piss in and blah blah blah - I realize that though things happened that were really bad, I did not keep the bad with me. As much as you can blame my future anxiety, cancer diagnosis, my old need for control, etc on my childhood, I refute it, I reject it.
Me & My Kiddos Right Before I Was DX - the last picture of us "pre-cancer"
Through the worst of times, during my childhood and young adulthood, I worried but I knew it would all work out. Or I deluded myself into thinking that. At times when things were darkest - when my grandparents who lived with us and cared for us after my mom left the family - seemed to be ready to give up because of issues with my dad - I still believed it would work out.
When my mom would call me crying because she did not have us with her but at the same time made no move to offer a safe environment, I still believed it would work out.
I wrote everything down, I spoke to a therapist until he tried to do something weird in my book - nothing illegal just WEIRD and then I kept my nose down and kept working, working, working, studying, helping my brothers, calming down the fights, listening to my dad rail about how my mom was a whore, listening to my mom crying about how lonely she was until she met someone new and then all was great….
So when I see my kids struggle at times with my illness and its aftermath, I think back about how I handled things when my world fell apart, multiple times. I just kept going and going and going and kept believing it would all be okay. I let the tragedies, the issues, the pity, the haters flow off my back like a duck with water off its back.
I rolled with things. I had my normalcy, my childhood sweetheart (who I did not marry) and their family who helped provide some stability and before I knew it, I was living in Italy getting my MBA and away from the chaos only to be hit with much, much worse when I came back and lost my grandma who held us all together. But still, I survived and I think about HOW - how did I do it and what can I push down to my kids to help them push through, too and you know avoid the cancer shit. So taking the good pieces and not the "delusion" or the "Type A" stuff...
I guess it would be called “resilience” or “internal fortitude” - the fact that I kept pushing and trying no matter how many times I failed (and continue to fail), witnessed failing and been failed is I guess because I am deep down to my core as positive as possible - maybe insanely so.
After 2 miscarriages, I got my son here by hook or by crook. After stage 3 cancer, I learned how to live. Unfortunately or fortunately so much of how I live and why I live has had to change. I already shared how I need to stop thinking in terms of my children and think about ME because otherwise, I will fall apart. I know that there are things they need that I can no longer provide them 100% - the safety, the stability - it is gone. I need them to find it deep down inside themselves as I did in 1986… and again, God willing, without the cancer.
This is what I do in the time between.
This post is sponsored by Celgene Corporation to review and share information about a new app to help children understand their mother’s breast cancer diagnosis called The Magic Tree. All opinions and thoughts are my own.
When I sat my kids down to tell them I had cancer, it was hard. I didn’t have any resources on how to describe what was going on. I didn’t know how I would handle it, and forget about how to help them handle it.
Of course, as a mom, I had to be stoic and positive that I would beat it and that all would be OK, but that it would take time to get there without really knowing what that “time” meant
I wished there was a way to communicate with them that they could understand. At 9 and 6, they were not yet able to handle terminology or be told to look things up on their own. I was on my own. I just knew that the treatment hospital had suggested I tell them as soon as possible and not let them hear about it by someone else or by innuendo. I got it and know how smart my kids are (all kids now come out smart) but I had no idea how to address this topic.
Celgene came up with an app called The Magic Tree and it is something that I wish had been around when I was diagnosed. It uses child-like explanations, with a glossary, videos and games to help explain a cancer diagnosis. It is a free app available for iPhones and Androids which you can download right now by clicking here The Magic Tree or from the App Store or Google Play Store.
It takes the child and parent through the four different levels. The home where the discussion is centered around “Is it my fault?” is so age appropriate, as most kids blame themselves for everything. The app also offers a library for a child to look things up about cancer. It talks about sharing your feelings a lot. We definitely needed that for one of my kids.
The next level is about “Can you catch cancer?” Again, it reiterates about sharing feelings and understanding that others might say, “Oh cancer, people die,” and that this is not always true. The third level is “What is cancer?”
While I liked it, I did find it a little jarring because it mentions how fast cancer grows and how it can spread to distant places. On the one hand, the activist in me loves this because ⅓ of patients with early stage cancer become stage 4, but it was a bit scary for my kids because they both asked, “Wait, that did not happen with you, did it?” It was good though because it did allow me to explain that my cancer did not spread beyond my lymph nodes. I find it hard, still, to explain to a now 7- and 10-year-old what could happen regarding cancer and me.
Fourth level is “How do you treat breast cancer?” This was very informative about how the cells get out of control and what can be done. The order of treatment was a bit off - chemotherapy, I think, would always be done before radiation and sometimes surgery is not done before chemotherapy and some folks do not get chemo, etc. But, all in all, it was informative and helpful to explain how it goes. Each section talks about the love mom still has for the child and how you can still spend time together no matter what.
Each level also has games to break up the heaviness of the topics, which I (and my kids) liked. I would like to see the mom with a little girl, in addition to the boy and maybe moms that looks like other moms, too. Perhaps future iterations will have different moms/kids for each of the 4 sections? Just a thought to make it more diverse.
All in all, this is a great tool to use for families who have a mom diagnosed with breast cancer. It can help explain tough things for both the mom, family and the kids! Thanks, Celgene!
So I spent time this weekend with scanziety over something that isn’t even a scan nor is it a different thing or out of the ordinary. It is something I do quite often with my clinical trial where I go in every 3 months for CBC blood work - so not even tumor markers- and then I get a physical exam of my remaining breast and my mastectomy side and then I get my next 3 months of trial pills.
There is no rational reason for me to be fearful and thinking that I will be told “that’s not good” - nothing has changed, I haven’t had any weird side effects so thank God about all of that - and yet I am still consumed with this fear that something will happen to ruin our immediate vacation.
I have realized that I am thinking in terms of my kids all of the time - what mother doesn’t I guess - but for this cancer mama there is so much that I have no control over even more so than “normal” moms. What do I mean by that? Well, you see I feel guilty that I got sick. I know I didn’t make myself sick I know I didn’t ask to get sick but it happened and though it did effect me it also effected my kids - sometimes more and more...
So now with this random unnecessary scanziety I know what I have to do. I have to recenter away from how things such as bad Dr news affects my kids and instead just think about me - me the kickass person who said cut the boob off, who sat through 8 rounds of chemo with a smile on my stupid face and worked full time during it too then got laid off then went through radiation and started sharing to help others in so many ways between career after cancer seminars the free kids book and sharing my story period.
I have to think about that because although my kids maybe couldn’t handle any bad news (God forbid) I know I can because I did ... so I have to do some deep breathes and just know no matter what I will go to Sloan and then to my family vacation after. No matter what. This is what I do in the time between.
I realize that each day that passes, I am further and further away from my diagnosis but I also realize that it has only been almost 17 months since I was told, "You have cancer." That is really not a long time but in that time, I have accomplished a lot. I have also failed at a lot and moderately skimmed by on a ton.
Here is my status, for my own mental health and also to remind myself of what is important and how. In these (almost) 17 months, I learned to let go and NOT panic as much as possible. When I was diagnosed, I wanted to immediately get the cancer out, I wanted to know 100% whether or not I would survive and I wanted to be called a "survivor" immediately...I also was sad, depressed and most of all ASHAMED. I could not believe it had happened to me - I could not wrap my head around it nor could I share it so I kept it all stuffed inside.
I also had to learn to embrace a body with only 1 breast - which was easier than I thought it would be but still not exactly "easy". I then had to move into chemotherapy and figure out how to survive during it. I had help though and shared my tips I learned by my sherpa here.
After chemo (during which I worked full time and then lost my job the day after my last chemo) I gave myself just 3 weeks until I started radiation. At my last chemo, though, I got my first Lupron shot and also got my script for the hormone suppression pill Anastrazole. Radiation was 33+ rounds and during it, I had a lot to think about as my oncologist thought I should sign up for the Pallas clinical trial. I was unsure of whether or not to sign up so I focused on taking my hormone pill and getting the kids to school and myself to radiation every day.
I continued radiation until July, at which time I had begun blogging - anonymously- here. Sharing my story felt right, it gave me the outlet and as someone who is a writer, it was a pleasure to do and after a few weeks, I decided to no longer hide behind a fake name and to limit those who knew my illness and went live with a big video and sharing MY story, warts and all here on this blog.
It was not long before I began to share about #careeraftercancer and tie in some content around job hunts and also about being a MOM with cancer. In early August, we went on a big trip to Disney (work for parents lol). Also in August, I signed up for the clinical trial and got the drug. Being on a stage 4 drug to see if it could help "early stagers" means that no matter what, my body is not yet back to "normal" - my blood counts are low and there are other effects of this trial plus the Lupron shot plus the hormone suppression pill.
Then, it was September and my dad had to get emergency heart surgery, which meant that I had to step up and do what I could to help him. I did not do as much as one sibling but I was the force behind the scenes and on the scene, too, when my dad would not wake up and I had to fight and be in the doctors and nurses faces to figure out what was going on.
Then, when he was released he came to stay at my house, which meant I was taking care of him - bringing him to doctors, helping him adjust to his new reality and more. It was tough as I had just completed treatments in July and here it was October and I had my dad staying with me and was helping him get better.
During this time, I met with the alternative medicine doctor at Sloan and learned that I needed to lose weight. I began a big fitness and dietary change and eventually dropped down to my high school weight. I also made plans and went away without my kids and also learned to be Lisa and not just "mom".
Before I knew it, I wrote and self published the children's book and began to promote it to give it away for free. I launched more content and wrote for other websites all about my story and also signed up to be a model for Behind the Scars and to be a
Goddess and also had personal photos done with my family.
Throughout this time, I worked hard to find work or to get organized to manage my budget and get things straight. I continue to do that but without the stress - as I have to realize and recognize that the past (almost) 17 months has been insanely busy.
In writing this down, I guess I have to admit that it does make sense that I would be tired. I have done a lot and I continue to push myself within kinder limits to enjoy life, to be present in the moment more and to forgo worry and fear as much as humanly possible.
This is what I do in the time between....
I faced cancer the way I have faced other traumatic issues in my life - with a strong attitude that hid my fears and shored up my defenses from anyone or anything upsetting me or getting into my walls.
You know, I read a book recently that had a main character talking about how bad things happened and then it would mean the rest of their life should be "clear sailing" because they used up all the bad stuff... This made me jump a little because yes, I have had some things happen in my life before I hit like 33 that you think would have used up all of my "bad luck".
Again, I do not really believe in "luck" - I believe we make our own luck and one thing I definitely believe now, post breast cancer, is that we can work on manifesting the positive, the good or at least put a spotlight on it and obscure the rest.
When people told me, during my cancer diagnosis and treatments, that I was "brave", I wanted to punch them. I did not have a choice but to do what I was told to do by my doctors. Instead, I settled on being "tough" but now I think it goes beyond that and goes into being "bravura" which is more "cleverness" and "skill" than brave.
At first, when I started building out this website from the blog to include the children's book and the career after cancer initiative, it crossed my mind, "Why am I doing this - what if I die?" - so even though I am so "positive", I do still sometimes succumb to the fear.
The way I manage it is to keep moving forward and to keep thinking about how I can help others with my perspective, my passion and my experiences. Cancer does not define me but it did put a lot of things into focus for me that used to be unclear. I know now what I want to do with the time I have left and that is to help others and to enjoy my life, my kids and my husband, family and friends.
I am not doing this to be "famous" - in fact, I think that would suck (though I would LOVE to be able to "swipe up" in my Instagram stories so if I could get to 20k followers there, that would be great - ha). I just want to keep pushing my bravura and keep myself focused on how to help others in anyway I can while enjoying life and all it has to offer.
This is what I do in the time between...
What is it all about? Life, love, relationships, fun, etc... what is it that we all want to be/ do? For me, sometimes, it is to shirk off my responsibilities (of which there are many) and be on my own and just write and/or enjoy my time - time without cleaning, feeding, caring, loving, etc etc...
As a mom, I guess I should feel badly about that - but I do not. My kids are amazing little people but they are draining and still unsure in the grand scheme of things if this new mommy, this one who has only one boob and less patience, is here for good or if I will die or if the other, rounder more singularly focused mom will show back up one day.
I feel for them, I really do - especially because I know what issues can be fraught within a mother/child relationship. I know that they see me as being the ultimate caregiver and that there is not anyone else in the house or the land who can compare to what I do and how I do it. I know they know that the extracurricular, the events, activities, etc are all somehow orchestrated by me and that I ultimately am the captain of their ship/lives/etc.
It is overwhelming for them and for me. It is also making them want more from their dad who God bless him is only able to do what he can do. I knew from the get-go that he was no Mr Mom and although he stepped up amazingly so during my illness, that time has passed.
All things considered, I had spent many years contemplating divorce and being a single parent as most times, I did feel as though I was one anyway. Now, with my new perspective and interest in expanding my role from just "mom" to you know, "Lisa", it is still hard to get others to play nice and handle the otherness of being the caregiver, even for a little while.
I have started letting my kids sleep out, something the old me would have never ever done. It is a luxury for me as we do still struggle with the bedtime routine and getting everyone settled so Morpheus can come and take me away - and as a breast cancer survivor, it is even harder to get that much needed rest.
I am realizing how much I had been depriving myself before I got cancer - how much I put myself lower than last and did not think I mattered at all besides being the person to clean up and take care of everyone. I do not want to be that person anymore but I still have to fill those roles so it is a very hard dichotomy in my soul and in my life.
If I had more help at home, I might be less tired and less irritable (occasionally). I might be more able to manage the grand ideas and schemes I have in my mind that could help our accounts go from negative to positive. I might but then I might not.
I might just use the time to sneak away as I did now just to write down the things that are inside my soul, that bother me, that make me want to spend this time, writing it out, getting it out of my head so I can then go back downstairs to the cleaning, the feeding, the caring, the "mom" role that I cannot bring myself to reject or to hate as my life really is contained within these walls - if my kids are ok, I am ok...
At times, though, I recognize they are not "ok" they are still scarred, still scared and waiting for someone, anyone to convince them that all will be all right and I see my own childhood traumas and scars in them... This makes me feel even worse - and guilty no matter how much my analytical brain knows that I did not cause my own cancer and that therefore, none of this could be my "fault", I still feel guilty. I think being a mom is full of guilt and pure love of self and others but it is mainly, at times, guilt.
Guilt at being the one who has to put the quash on any big plans - I am currently dreading the upcoming spring break because too little money + two little children + 10 days off = DISASTER no matter how many ways I try to spell it. I have to get on planning play dates and other low cost alternatives to the potential of having to drag them out every day to tire them out when the weather is crap and the finances are even crappier.
Yes, though I promise myself to let go of the finances that does not mean than everything is suddenly free.
So I continue this tightrope of not giving in, not falling into the despair of feeling defeated - I have gotten this far and as long as I do not need chemo this week or this year or this decade then fuck the rest. Though, I am hiding in my room for a few hours more if I can - shhhh, don't tell anyone.
This is what I do in the time between...
Just an update on my initiative to send out *free* copies of the children's book I wrote for my kids and I to process the whole cancer plot twist that hit me and everyone who loves me.
I say this a lot but cancer does not just hit the patient - it hits the family, the friends, the caregiver (or the person who all of a sudden finds themselves a caregiver like what happened to my husband) . For my kids, they had a tough experience seeing me who did everything for them not be able to do it anymore.
We had an uneasy truce where I had to table a lot of stuff during my treatment. I could not help myself so I definitely could not help them. I could give them the speech that "I am ok." but they aren't dumb and they could see that I was NOT ok.
After I finished all of my treatment, I saw my daughter particularly still struggle as my son just would say everything he felt including the fear that I would die when my daughter did not say anything but instead kept it all inside. My son, though, too was still processing everything. I sat down with them and started writing what would become my children's book "I'm Strong, You're Strong, Everyone is Strong...What We Learned When Mama Got Breast Cancer". I taught myself how to create a children's book layout originally just for them. It was not easy - it took me days and days to figure out how to lay it out and how to find pictures for it and how to self publish it - and I am a published author already and know how to write and publish but this was a whole new ballgame.
Once I published and ordered a few copies, my kids loved reading it and it made me think how it could help other older children also deal with this plot twist of having their mom get cancer.
I have sent away 18 copies of the book, for free, and some have gone as far as Australia, England, New Hampshire, Canada, New York and more. I definitely do not know how much I can afford to print and send but I am working on filing to be a non profit so maybe I can get a grant to continue.
Whenever I see someone post about their kids and how they are managing the fact that mom has cancer, I offer the book and even created a page to collect information to those who want a copy here.
Some of the feedback I have gotten already tells me the book was helpful such as:
This is what I do in the time between...
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