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...
My whole life, I have experienced things differently than others. I know a lot of people who fall apart at the drop of a hat and I was always stoic and focused on how to survive the things that happened instead of wallowing in them.
I have had people "pity" me before I got cancer. Pity sucks and I thought I had written before about how it is a useless emotion. I pity you and think how lucky I am to not be you and then moments later I am all pissed off about something not working the way I thought it should. At no point did anyone learn anything, anyone help anyone, or anything positive come out of that experience.
For me, there are times when I am reticent to share my story upon meeting someone new or when talking with folks. I do not know why this is - I am almost ashamed of it but there are some people I can sense off the bat would pity me harrrddd and though I am used to it sometimes I just CANNOT.
As I said, I have experienced pity before being a "motherless" child - through divorce, not death, marrying a cop who had some issues - to put it mildly, having had miscarriages and being broke and well the list goes on... I always have and will continue to hold my head up high despite the drama the pitying looks and all but sometimes I tire of being this "sick person" who is pitied.
You know, I am not sick. I do not *feel* sick aside from being tired but I was always tired even before cancer and its treatments. I know I have written this before but it bears repeating for any newbies reading this - when you are diagnosed with cancer, throw out your experiences of what it is like to go to a doctor. Before cancer, if you do not feel well, you go to your doctor and they make you feel better. During and after cancer, you go to the doctor and you get hit with treatments that make you feel worse, worse, worse than you can imagine.
Then, once you are "done" with all of your active treatment, there are still more things you must do such as hormone therapy and/or ovary suppression and/or clinical trial and/or just hope and pray it never spreads (God forbid) or comes back (also God forbid).
You know you cannot live in the mire or in hiding (trust, I did it for a while and I could not any longer hide but instead went loud and proud by unveiling myself in this blog). Sometimes in telling your story, you feel so empowered like a kick ass warrior women who knows how to manage it all but then you look at the other person who never had to deal with cancer and you envy and worry about wow how much it would have been amazing to go back in time and never to have been told you have cancer...
Now, I know it is hard for me to ever hide this shit as I have only one tit and oh a blog that about 2400-3000 people a WEEK are on and reading; not to mention my Facebook and Twitter accounts that are also kind of broadcasting the fact that I am, in my own mind, a cancer survivor.
However much I call myself a survivor, my doctors at Sloan would not as there is something about a 3-5 year window that needs to be hit before that word is given to you. That being said, I am okay with calling myself a cancer survivor (just recently, though). I was calling myself a survivor in training but I decided to just go for it and promote myself because I do so believe that a bulk of this crap with cancer is mental and physical and luck and out of my control.
When I created my hypnosis script and mixed it with a meditation tune in February, I was so damn happy about it because in my mind it is another layer in my defense - I am hypnotizing myself to believe there is no sign of disease anywhere in my body, plus I am exercising and staying low on the scale to help with risk of recurrence and eating healthy and using only organic crap in my hair, on my face, on my body etc and STILL I know as much as the sun will rise tomorrow that there is still a 30% chance that I could become stage 4 and die from this disease.
I do not know what other people know about these stats, though, when they pity me. I do not know if they know that stage 4 is the only kind of breast cancer people die from or if they just feel bad my hair is so short, my boob is one less or that my kids went through something life changing at such young ages.
I do know that no matter what, I keep sharing my story, meeting more and more people and struggling with my own fatigue to figure out how to execute on even bigger things to help others who have been told "you have cancer". May it never be you or someone you love but if it is, I am here for you.
This is what I do in the time between.
I spent some time after diagnosis and treatment getting bogged down with what I wanted to do to stay as "healthy" as possible. I put "healthy" in quotes because I do not quite know if I will ever be considered such again - I mean, I am NED (no evidence of disease) but since I had cancer in 2016 and was treated in 2017, I guess I just do not know if I can ever be considered "healthy".
In my mind, though, I am healthy. It is the only way to live.
Here are some of the things I do to keep myself focused and sane.
Re hypnosis - I like the Seth Deborah one but I recently saw the trailer for the Heal Documentary about how the body can "heal" itself and I tried to follow what the guy in the trailer said to envision his spine put back together and then it healed without surgery by creating my own hypnosis script to review every part of my body and envision it cancer free. It was challenging to do and it required me to research how to make a script, learn how to mix two different audio files of the hypnosis and the music in the background and also to create the audio of my speech. I guess it can never hurt to try to do more and more to keep my body healthy and well post cancer. If you are interested in my script, email me at firstname.lastname@example.org.
This is what I do in the time between. ....
2017, you sucked. I am so glad you are (almost) over. This year, I missed out on so much because chemotherapy broke me, radiation burnt me but I also learned so much. I found I could get out there and unmask myself, show my bald head, tell my shame of getting sick of losing my job of being judged as being “too sick” and “not worth it” and showing the world that I am worth something, that even though I got cancer, I am still a person, someone who is not to be pitied or ignored or forgotten.
I watched my children learn the hard way how sometimes life is so unbelievably random and unpredictable. I watched them also learn how people can be so amazing and kind. I saw them worry about me dying and I was also worried about me dying and it is just too much to all be worried about death. I spent time hugging them and reassuring them and just all around trying to believe the hype, too.
I learned that cancer is something that never truly goes away but if you are lucky it will not kill you. I have always known that what does not kill you makes you stronger I almost feel like I did not need this masterclass on this topic but it is what it is and it can always be worse.
Usually, during New Year's Eve in my past, I would cry a little when the clock struck 12 and think about the time that passed and what I did or did not do. This year, I refuse to cry. I am finishing up a year that was spent primarily in treatment for cancer with the extra dollop of joy of being told I did not have a job for next year and other crazy stuff like family member’s health and being a caregiver even though I was not yet fully healed and more.
There are many things I want to focus on for 2018 and the most important thing is to not worry. You see worry is something that does not help anything. It does not change the trajectory of the future, it just ruins today. I am confident that I am healthy and will stay that way but sometimes, I worry. Right now on the cusp of saying goodbye to 2017, I want to promise myself that I will not go down the road of “what ifs”. I have been doing pretty well with not thinking about the possibilities but so many people have been dying of cancer lately and it truly is a disease that is so misunderstood and sometimes, the thought does cross my mind that I could be a victim. I want to think it even less.
I know I need to find my “next step” my new path after the plot twist of cancer. I know this will help me to heal, to feel whole again. I also know I need to continue to doing what I am doing - practicing gratitude, exercising every day, eating super clean, taking vitamins, my clinical trial, my hormone meds, my hypnosis, meditation, and writing. Writing above all. I would love to find a way to use my writing abilities to bring in an actual income. I am working on some things that might help me be able to do this but in the meanwhile it is a way for me to get out how I feel, to make and keep new friends who are also dealing with this crappy thing called cancer and to get out of my head. In writing it down, I theoretically can no longer hold it inside.
In 2018, I want health and wellness (and a cure for cancer). I want to be doing something meaningful in my charity work and also in my career. I want my children to be confident that I am not planning on going anywhere. I want to continue to share my story and hopefully help other cancer patients who feel the way I did know they are not alone. I want to have many years left to travel, to hang out with my friends, to watch my children grow up, to dance with my husband, to make inappropriate jokes and to just enjoy being alive.
I do not want to deal with pettiness and nastiness. I do not want stress. I do not want to worry about what happens if cancer does X or Y or Z. I want to “forget” cancer was in my body and instead focus on what I DID get from this heinous disease. I got the ability to try to live in the moment. To have grit. To show my toughness. I always knew I was tough but now I got my doctorate in it. I hope for all of us to have a healthy 2018 and beyond. For cancer to be a thing of the past.
What do you want to manifest in 2018? How do you manage cancer fears?
My “Poem” for 2017 (this is why I am not a poet...)
2017 I hated you so much
You had to come along and punch me in the gut
In 2016 I lost my boob
because cancer got caught there and made me a fool
after my mastectomy, I thought it would be easy
to get chemotherapy
ha I was so crazy
chemo was brutal
I worked through it full time
with a wig and a smile
I suffered without words
and lost my job with a sucker punch in the nads
after chemo came radiation
for 34 sessions
then I had follow ups and clinical trials, I ain’t playing
I lost 50 pounds
in the hope that I will be
Cancer free forever you see
My kids they were scared
My husband and I were too
Because when cancer is something that happens to you
It screws you right up and scares you to death
I have no intention of giving up yet
I am here for good
With nowhere to go
I am a fighter, a survivor a lucky ass though
At the end of the day no one knows the future
The cancer is something that makes it much clearer
Photo below: Xmas 2016 vs Xmas 2017 - in my mind, I was the same size until I did this side by side comparison (160+ pounds vs 137 pounds)
Nothing is perfect; no one is perfect. Everyone has their shit and everyone has to learn to deal with it. No one gets what exactly that means, though. Except me. I get it and always did. I believe that if we all got together and smacked our problems down on the table like playing cards that we each would still want to leave the table with our own problems and not someone else’s. Everyone has some great sadness in their life - everyone has something that did not work out, or some plan B they had to execute that was not their plan.
Shit happens and the real gem of life is learning to take that Plan B and love the hell out of it even if it was never in your plan or thought process. For me, I never ever planned to learn to live with such dignity and grace in the face of such adversity. And I thought I knew adversity and I thought I knew what it meant when someone said, “you don’t know how strong you are until being strong is the only choice you have”. Stupid me.
I have found that when I was weakest and most downtrodden was actually when I was most strong, if that makes sense. Right now, I am nowhere near as strong and tough as I was when I walked into that operating room to get the cancer removed from my body. I was not as strong then as I was when I sat down in the treatment chair for the first round of chemotherapy. I was never even as close to strong as I was when I went from the first 4 rounds to the new chemotherapy drug and not knowing the side effects or issues that would happen. I am not as strong as I was when I sat through 34 radiation treatments. I am not as strong as I was when I put my name in to do the clinical trial (PALLAS)... well, you get the idea. lets-get-clinical-clinical.html
In each of these steps, I have been stronger than I ever thought I could be. I have just kept rolling with it but it is not me alone. I have had support, prayers, faith and more to keep me sane, to keep me smiling, to keep me focused on the prize. The prize is just simple - it is staying alive. It is staying NED as much as possible. It is being cured or whatever is called “cured” for this disease.
It means I have worked hard to change my whole body, what I eat, when I eat and what I do on a daily basis. See, most everyone has “cancer” in their body in the sense that they have an errant cell that wants to do bad things but for the bulk of the population, this errant cell is killed immediately and cannot reproduce. In the words of my nutritionist, Dr Napoli, for cancer to happen it has to be a “perfect storm”. The cell has to be able to do it’s bad work and thrive inside to create the tumor and ultimately spread around.
For me, I was diagnosed after a mammogram showed slight calcification in the duct which was microscopic and not able to be biopsied; it also was 98% chance of staying benign. A few months later, I had “advanced stage” breast cancer with a tumor of 5.6cm and 5/25 lymph nodes positive for cancer. This means there is always the chance that the cancer moved and got someplace else and it also means that whatever is wrong with my body has to be corrected and/or fixed for the just in case’s of cancer.
See, no one is ever truly “cured” of cancer. What it starts in your body, it can always come back. My above referenced nutritionist told me about a conference he attended where it was said that, “85% of cancer patients do not change anything after they are done with treatment.” If this stat is true (and you know what they say about statistics…) that means I am one of the 15% that got myself totally upside down after cancer.
As I have written about a lot on this blog, I read the AntiCancer book learning-about-the-beast-breast-cancer-anti-cancer-book-review.html and that started the seeds of what would ultimately become a total life transformation. See, I was never “obese” but I was up 30, 40 or more pounds from what I had weighed in my “youth” but you see, as a woman who has been pregnant and has children, you just do not think that weight is possible. I looked in the mirror and saw yes a curvier version of me but in no way did I really see me. I saw a woman who still wore a size Medium and just had some extra weight I mean didn’t we all? I am still friends with girls from high school and college and other friends who all say the same thing, we just are not the same body types we were when younger.
Well, then I got cancer and realized there is a big link between excess body weight, hormones and cancer and all that jazz. So I did something I never thought possible and would have smacked you if you suggested it in the past. I weigh 137 pounds, which is what I weighed in high school. It is insane. It is also something very different because in high school, I ate donuts and crap and did not exercise and that was my weight. Now, ha, I have to forgo sugar, exercise daily and fill up on fruits and veggies instead of chips and popcorn.
I am telling you all of this because when I saw my surgeon’s office this December for my 6 month follow up, everyone lost their collective minds and told me I was amazing and that I did the best thing I ever could have done for my health. I am not sure if anyone other than the alternative medicine doctor which I wrote about here integrative-medicine-clinical-trials.html ever told me that unequivocally that weight was so dangerous or if I was told I did not register it.
See, I will do whatever I have to do to keep my body inhospitably to cancer but I will not fall for fads or other crazy things. I am focused on research and proven methods to improve my body and its reaction to rogue cells. To do this, I am working with my nutritionist as well as my doctors at Sloan to balance all of the pieces of health. I no longer eat to just eat. I eat to fuel my body. To help the fight. I do not take a multi-vitamins, I take some supplements that are proven to help my immune system do what it needs to do. I do not let stress, worry and fear into myself (as much as I can not let it, I force it to not be there) and I also exercise and move every day.
There are no guarantees, however, that any of this will work as ⅓ of cancer patients regardless of initial staging become metatastic but I will continue to do it anyway because it cannot hurt.
What do you do to help keep your fears of cancer returning away? What do you do to try to not get progression of your disease? How do you keep your body as healthy as possible?
URGHHHH - I am in such a bad mood right now! (That I am reading this and writing it really like a teenager... sorry for that, I had to VENT and with my last name being Vento, you would think I would be used to this...) My bad mood, though, it has to go away - I have to come to grips with the things that are bothering me.
1- No one picks up after themselves -- this is getting ridiculous. I have 4 other people and a puppy in this house and not one of them picks up a dang thing. Yeah, that's right, I am calling out my puppy. Just because he is so cute does not mean he is exempt!
2-No one cleans. This is just something that makes me crazy - everyone has eyes and can see the kitchen is a mess, the bathrooms need scrubbing, the groceries need to be put away and organized but yet, I am the only one who does it. My husband knows I want a clean house for my birthday tomorrow but I guess it is coming after I clean it -- URGH!!
3-My oncologist does not agree with my supplements. This is a big one and probably the trigger as to why 1 and 2 bother me so damn much today. I met with Sloan's integrative medical doctor months ago and was kind of left wanting more. The appointment was fairly brief, I was given 4 supplements to take that I think everyone who meets with him is given and I was told to lose my belly fat.
I lost my belly fat and then some and now I wanted to explore other ways in which I can keep my body as inhospitable to cancer cells as possible. No matter what, even though I did my surgery, chemo and radiation, this does not mean I am "cured". It does not mean that I will never get sick again or God forbid die before my time due to the word "cancer".
I believe in doing anything and everything I can to avoid this happening to me to my family and just in general because I am not done skootching the shit out of everyone in my life yet. I sent over the list of vitamins and supplements the nutritionist and I decided on - and read, he and I decided on them. I had done my research and knew something and he knew a whole lot more than me. Before setting me up with said vitamins and supplements, he met with me for an hour and a half, sent me for very specific blood work and then after the results were in (3 weeks later), we met again for an hour and reviewed where my blood is "lacking" and what this means on a genetic, cellular and cancer-hating level.
My oncologist's office called today to say that she does not approve of me taking these supplements except for the few prescribed by the integrative medical doctor at Sloan integrative-medicine-clinical-trials.html. I would never criticize Sloan - I love them and think they saved my life. However, they are known to be traditional and not as forward facing as maybe other hospitals.
I hate to feel as though I am gambling with my future, my health but really that is what life is - life is a gamble. One never knows what will happen in the future. I was not given things that are "radical" or "unproven"; I was given supplements like Vitamin D, Magnesium, Vitamin C and some other items which I will write more about later when my brain calms down.
All I want for my birthday (tomorrow) is a clean house and some further conviction in what I want to do to treat my WHOLE BODY not just the breast that got me into this mess and is now gone. How can I keep my whole body as inhospitable to cancer cells as possible both through modern, western medicine, nutrition, supplements, what I eat, how I manage stress and all that all the while knowing that everything can be futile that there is still that unexplained 1/3 of early stagers who wind up with stage IV cancer.
It is a continuum both health and life. We make choices and we have no idea what the end result will be and I felt the same uncertainty and worry when I decided to sign up for the clinical trial through my hospital and yet when I found out I got the pill and not the study arm without medication, I was at peace lets-get-clinical-clinical.html.
Right now, I am looking for peace - the ability to be at one with my decisions. That these supplements and vitamins that I am supposed to take for only 3 more weeks (total of 4 weeks; one is done already) will not harm me and will instead help me.
I also hope for a clean house tomorrow, to shake my cold, to experience joy and gratitude right now and tomorrow for the passing of a year that was one hell of a freaking year and to all good things ahead.
Deep breathes and all that -this is what I do in the time between.
Do you take additional supplements in addition to your oncologist "approved" medication? You can check out my About Me page to see what else I am on... About Me.
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