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.
Me & Dad at my 2005 wedding :)
So you would think that going on vacation after breast cancer dx and treatment would pale compared to vacations of yesteryear -- but you would be wrong!
Why is this and what is wrong with your writer? Simple - the word for it, I guess, would be “anxiety” - or just “fear” or just “stupidity”. When I think back about all of the things that I worried about when in reality, I had nothing to worry about I really do want to have a flux capacitor to go back in time to kick my own ass.
So summers past getting ready for vacation would boggle my mind - I would pack everyone and panic the whole time, thinking about the ride to wherever we were going and whether or not there would be traffic. Yes, this girl, who lives in the most densely populated area around had an anxiety disorder around being stuck in traffic.
It was something that creeped up on me little by little over the years - my world got smaller and smaller but not overnight - over years. I went from traveling the world, living in other countries and states and even doing the 27 hour flight to Singapore without a thought. It was just “living” and I did a lot of it - I mean, I used to fly to Rome for the WEEKEND. For the weekend! Crazy.
Then, little by little, I got less and less adventurous. I started to really think in terms of “No, I cannot do that!” Before my “real” wedding (after we eloped alone) was my first inkling that I was developing an issue.
All of a sudden, I could not take the subway anymore. I had taken the subway ALL OF THE TIME but now, I got the intense feeling that I would need a bathroom during the times when the train stops and waits - at times this could be 4 minutes or 4 hours (ain’t nothing like the good ole’ MTA). What a weird, random thing to worry about but it consumed me for many years - this fear of needing a bathroom when there was none…
Looking back at when it all began was around the time of my church wedding. I was really worried about my wedding - we had eloped, yes, but had planned an semi old fashioned church wedding with party for a few months after our elopement.
All of a sudden, I was convinced that something bad would happen at my traditional wedding. My dad, who had raised me as a single dad, and my mom were basically still at war even then almost 15 years after divorce and my mom would be at the wedding with her new-ish husband.
My dad had hated the fact that I lived in “sin” with my husband before marriage and I just did not know what would happen at the wedding - would he not be willing to walk me down the aisle? Would he be angry at me? Would my mom do something crazy?
It was all a “loose cannon” opportunity to someone who had been raised hearing ALL OF THE TIME about how my mom’s dad refused to walk her down the aisle and how this meant she had no family and that the marriage was cursed, etc etc. Now, here, was the perfect opportunity (down to the same CHURCH) for history to repeat itself.
My mom was to be my maid of honor - I had been hers more times than I could count (ok, twice, two times, two different marriages) so I figured it was her turn to do the same for me. I had no real “fears” about her doing her job - she had been in enough weddings as a bride to know what to do (lol).
Leading up to the wedding, I knew something was “off” so I went to a therapist (not a new thing for me, I began therapy in high school just through my school and college, too) and walked out when she blamed my fears and anxieties on my childhood and my parents. I do not abide by that - not just because I am a parent myself staring at the precipice of childhood trauma with my cancer diagnosis - but I just feel that anything going on with me in my late 20’s though maybe jiggled into place by a fear around history repeating itself at my wedding is not anyone's FAULT but mine for how I see the world.
(Also, at the time, I struggled with even pinpointing what my issue was - it is only now with present’s 20/20 hindsight that I can figure out what it was…)
Oh and see that picture above of the 5 of us, my "core" family - it was taken in 2005; the last such picture I have of that group is from my college graduation in 1998... so was stress really that much of a surprise?
The wedding went well, my dad walked me down the aisle, crying audibly the whole way - weird as he is not really someone who has even been “emotional” - and the party was awesome but the fear and the nerves did not go away.
Shortly after my wedding, I turned down a travel requirement for my job and told my boss I did not feel comfortable flying for the short term. He looked at me like I was nuts - me, the girl who hopped on the plane to Singapore without saying “boo” who flew to Florida, Ohio, Iowa, Italy etc was asking to sit out the next flight. And the next. And the next.
This did not go away even when I changed jobs to my big step to being a VP and a big salary. I still had this “issue” - some days, I could not even make myself commute to work and instead worked from home.
It was debilitating and yet, I did not realize it or would not realize it. So vacations past were a hotbed of anxiety, fearing the road trip - me who used to live in Boston and drive to NY on weekends just for fun - could not fathom a trip to Pennsylvania without worrying and fears and being a nut.
So, facing cancer, if it does nothing else for me, made me realize I cannot live in FEAR. Commuting to NYC for my initial appointments, stuck in traffic on the FDR, I looked at my reflection in the cab’s window and said, “You have cancer - you cannot be afraid of anything anymore. Your worst case scenario came true - this is what fear breeds, disease, illness, death. It is OVER.”
And, for some reason, after years of journaling (is that a word?) and worrying and thinking, I felt it let go. When it tries to come back, I remind myself, “I faced cancer, I can face ANYTHING.”
I just wish I had been able to learn this lesson without the potential life threatening illness BUT I non friga nienta because at least I learned it. So if you ever see someone peeing on the side of the road, it’s me and I do not care :). This is what I do in the time between.
A few minutes before walking down the aisle, this is the face of "oh shit, please don't let this be a disaster!"
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.
No matter how much I am happy and smiling and so damn happy to be alive, I do still get down and feel "off". Today is one of those days. I am proud to say these days are few and far between but that is not by "nature" - that is because I actively work hard on it every damn day.
Most days, when I get caught up in all of the things going wrong (and trust, there are a LOT), I hit myself mentally with the memory of how I felt when I was first diagnosed with cancer and going through treatment and how much I wished and prayed for my "old problems" back and force myself to recognize how damn lucky I am that treatment is over and pray that it stays that way...
I try to imagine how it would feel God forbid to be told the worst news - if God forbid the cancer came back or spread - both things I try NOT to remember and worry about but when I get all caught up in petty b.s. I find it helps me to remind myself of what really is a "worst case scenario" and what is just that petty b.s.
That being said, I am only human and I do get upset at times or worried or dare I say it "down". I can not really ever even claim to be "depressed" because I am naturally buoyant by nature and really have never in my life felt something that could clinically be called depression because I am fucking perky and trust me, most people can only handle me after a few cups of coffee.
Today, I am feeling upset about stuff. There is a family issue with one of my siblings, my dad's heart health, my upcoming clinical trial visit at Sloan ... and ding, ding, ding - I know that all of a sudden feeling so upset about everything does have a lot to do with a weird kind of "scanziety".
You see, with my clinical trial, I go every 3 months to get blood work, physical exam (as in my remaining boob and my chest get manhandled big time by the doctor or nurse) and to collect my next 3 months of pills and drug diaries. For some reason, because I have plans for the week (a surprise vacation for me and the fam), I am hard core dreading this follow up despite never even acknowledging them emotionally before. For example, I have been through these clinical trial appointments already 5 times - this is my 6th go round and I never before batted an eye about them. But this one, this one is freaking me out.
As far as I know, there have been no changes - no lumps or bumps aside from what has always been on my scar. I have not had any issues (thank God) with the trial pills - I am done with cycle 8 and aside from my blood showing low WBC, I have been "ok" - I mean I walk 6+ miles per day, I run around after and with my kids and just balance a lot of stuff oh and I survived Spring Break with the kids home and with no hard plans because of, you know, budget issues.
So why am I dreading Monday's appointment? Because in this reptilian piece of my brain is the fear, that little voice that says, "Sure all of your other appointments have been great and you never worried but now this one might NOT be and then you have plans to go away..."
I hate that stupid voice. I know that stupid voice - it is mine. I am telling me to shut up now immediately. That does not mean I will not indulge in a little crying - which is strange that I even feel the "interest" to cry as I do not cry - I cried once after diagnosis and once during chemo. I am just not a crier - there is nothing wrong with crying but I do not often feel the need to do it.
I mean put Beaches on and I will weep hysterically like a baby child. Or, you know, put on Coco and I will be a puddle on the floor. I mean, I have a heart. I just am not the type of person who feels they need to cry unless something is shamelessly playing with my emotions like killing Barbara Hershey or showing a young child how his family dies and needs to be remembered and shit.
So this is what I do in the time between - work out my feelings on this blog and try to force myself to not panic. Should be fun! I will update of course after Monday but not too much as I plan to still be on vacation NO MATTER WHAT!
So check below to see ME - way out of my comfort zone but then again who of us who have been diagnosed with cancer can even remember what a comfort zone is or where it is?
I have already shared some pictures showing my scar on both my instagram and my blog that are (to me) breathtaking and I guess contemplative and some have said it shows that I am “resigned” or “tough”.
I cherish those descriptors and I love it - because as soon as I heard the words “you have cancer” at 39 years old with a husband who hadn’t been “there” for me, 2 kids aged 6 and 9 that took up my whole life force and energy I really did have to get resigned to it ASAP because there was no “no thank you” option.
It was live and growing and I wanted it OUT in any way possible and did not even consider doing a lumpectomy but asked (or demanded ... those who know me know when I want something, I do not take no for an answer) for the mastectomy.
I have shared this before but when I woke up from surgery, I was so scared - not before surgery at all - but afterwards, I was afraid to look at my body - this new body that would be "half". The breast (yes just the one) I used to feed my daughter, the "pillow" both kids had laid their heads on multiple times per night (lol) the weight and feel of the breast - I knew it was gone, I could see the bandages but I would not look at my body for some time.
Then, once I “healed” I began to wear a prosthetic and avoid the half bloated and bald body in the mirror.
I was ashamed and disgusted by how I looked and the fact that I got sick. At some point, though, I realized that I needed to love this body .... this body that survived childbirth (one natural, one c-section) and 2 D&C’s in between as well as cancer and all of its requirements like mastectomy, lymph node removal, 8 rounds of chemo, 33 rounds of radiations, gaining 50-80 pounds, losing the weight, walking my 40 miles per week, etc etc...So I do - I love my body and these special photos by #behindthescars taken by the amazing photographer Sophie Mayanne tell that story.
I look at these 20 pictures and I see a beautiful dare I say “sexy” confident woman who is not half but whole and I share it for you, those of you who find yourselves the 1 in 8 and fear looking in the mirror now that you feel half - to know that someday you will know that you are whole too.
PS: I do feel a bit funny posting these as a 41 (to be 42, God willing) mom of 2 but I do think it’s important to share that breast cancer is not a pretty pink disease but you can still feel pretty and beautiful after being mutilated, poisoned and burnt :).
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 like to be open and up front about my choices and my cancer and what I do to keep my body as inhospitable to cancer as possible and a while back I wrote about my decision to take extra supplements instead of the ones the integrative medical doctor at Sloan advised me to take.
Within the last few weeks or a month, I decided that the supplements were not going to work for me personally anymore. I had my last appointment with the nutritionist in like January and it did feel as though the bloom was off the rose, if you know what I mean.
I was spending upwards of $300+ per month on vitamins and supplements (it was actually more) and about $75-100 per visit. For me, it is worth every penny if I continue to believe in what I was doing. I got the sense at my last appointment that all of the information I had been given and researched on my own were just getting too much into "maybe" territory.
It was like well all of these supplements are probably going out in my urine anyway and I saw no noticeable difference in my blood work in terms of my wbc or vitamin D.
I decided instead to pick and choose some of the items - so I am doing Vitamin C and Melatonin (it helps me to sleep) and then using just the stuff Sloan recommended I take - Turkey Tail, DHA and Probiotic and Vitamin D.
I am still eating only non-processed foods, less meat, as little dairy as possible, lots of fruits and veggies and maintaining my weight at 130-135 pounds. Also, I work on not being stressed because now when I get stressed, it hurts. I also work on meditation, hypnosis and more to keep myself from worrying about things I cannot control.
What about you? Do you use supplements? 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...
Search the blog here: