So as a December girl, my birthday has always been a great way to celebrate the holidays in overdrive. I used to (before kids) decorate my house and tree right after my birthday (or the day of it) - now of course, we decorate after thanksgiving.
I was diagnosed with breast cancer shortly before my birthday last year - actually almost 2 weeks before my birthday to the day. This year, on my actual birthday, I have to admit, I had tons of mixed emotions. I was of course happy and thinking myself blessed and lucky and all that jazz but I also experienced a lot of fear. A lot of dark thoughts about what could happen and if the worse would happen and I would die before seeing my kids grow up or not have the chance to do my renaissance my new me my unveiling of whatever it is my goals in my new life will be to give back, to do more and all that jazz.
I know I have some PTSD and some other lovely issues to work through but I know it takes time. I do all I can to stay focused and positive but sometimes, of course, I falter - hey, I am only human.
Today is the day I can truly celebrate, though, and stay focused on the prize, which is this moment, today, this exact moment of knowing that one year ago today, I had my surgery. My surgeon took out everything - my mastectomy is quite radical I mean hey my tumor was almost 6cm after all. Also, I lost 25 lymph nodes a year ago today of which 5 were positive for cancer.
When the surgeon spoke to my husband he told him emphatically, "I removed all of the cancer. It is all gone." I posted about that on Instagram today (@thetimebetweenis); from that point on my husband has been convinced that I am cured, that I am cancer free. I live my life to try to believe the same, every moment of every day because if I did not, I would not have any peace. I know that this might not be true as it is not true for 1/3 of breast cancer patients who wind up having cancer spread to other parts of their body and become "terminal" at some point...
I also know that some people have local recurrences and all that jazz. I try instead to be positive and not think about those possibilities, but sometimes like the night of my birthday, those thoughts were taking over and winning which sucked.
I did have an awesome night and was able to not cry - because at one point, at dinner, surrounded by my loved ones, I did want to cry. I think the tears were a mix of self pity and fear and I do not like those feelings not one bit. I am thinking about making a post about how pity is one of the worst emotions and why I think so but for now, I will just say that it was a moment of weakness - which everyone can experience at any time though in the old days, I felt this weak all of the time -- now ,though, I truly do (try to) live in the moment.
I am going to share something now that might make you think I am insane - and if that is the case, it is ok, sometimes, I think I am insane, too (lol).
On the night of my birthday, when my peace was rocked, as I was sleeping one of my children called out to me and said, "Mommy, I am scared!" (This happens sometimes as they were impacted by my cancer plot twist and it is the reason why I worked on the children's book told from "their" perspective - see it here - working-through-the-pain-or-what-your-kids-feel-when-mama-gets-sick.html.
Anyway, when they called out, I wanted to say, "I am scared, too." but I did not of course - I told them, "Everything is ok, there is nothing to be scared of..." then, I quickly fell back to sleep but I was not asleep. Instead, I was bathed in a white light that was so strong and so bright and yet I could look at it without having to shield my eyes. I was in a white bright room and in that room were 2 other people - Mary, the Blessed Virgin and Padre Pio. I have written before about my experiences with Padre Pio here padre-pio-me.html.
This experience was more deep, more profound and even if I created it in my head alone (which I do not believe) it was still something that brought me great peace and made me feel that no matter how much I worry, it does not help and that I should just follow my original gut instincts to "pray, hope and don't worry". There was more that happened during this "vision" or "dream" but I cannot put words to it...
I woke up suddenly because I felt something in my hands. When I opened my eyes, I was holding my green scapular in my hands, tight. I will write more about what a "scapular" is at another time because this post already is turning into a book and I have some living to do today! On this day, the day of my "rebirth" there is no bad feeling or fear - there is just this moment, this moment when last year, we heard the magic words, "All of the cancer is gone." I am going to hold on to that and keep it with me so that I can continue to have my peace, no matter what.
What do you do in the time between to help you cope with the fears, the bad stuff, the PTSD? I would love to know! Thanks!
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.
First picture is at my heaviest on June 24, 2017 178 pounds; middle picture is July 24, 2017 and last photo is from August 2017
I have been posting a lot on Instagram (follow me @thetimebetweenis; I follow back) about my weight journey post breast cancer treatment. It is strange to be sharing so much - I do not know if I will ever get used to it - including the photo of my naked chest...
Anyway, my whole life post puberty I was about 135-137 pounds and almost 5 foot 6 inches. I was never happy with my body. I do not know why - when I look back on pictures even before I went down the road of breast cancer, I do not know what I was complaining about. I looked healthy and curvy. I wanted to be 120 pounds though. HA! (Picture on the left is on the night of my high school ring ceremony when I was a junior in high school.)
I was never a very active person BUT I had a wicked fast metabolism. I would eat so much junk - my house was Entenmann’s Central - my grandma would go to the outlet for the baked goods and load up once a week. I remember trying to weigh less but not really caring enough to eat a vegetable or do any exercise.
When I moved to Italy, I walked like no one’s business but only on weekends. During the week, I had work each day in the office and classes 4 nights a week oh and homework. Living in Italy, I was called “fake skinny” by my friends who put me on a scale during one of our infamous all night study sessions. It was in kilos though so I did not really understand but they both told me their girlfriends did not even weigh ½ of what I did which led me to believe their girlfriends did not get anywhere near a scale around them.
So for me once I returned from Italy and could read my scale I had gained 10 pounds but I am sure it was muscle. No really, I am sure of it. You see, in Europe and basically everywhere except here in the USA portion sizes are “normal”. When you go to an Olive Garden (for example) and order a pasta dish, you are seeing a size of plate that is at least 4x larger than the size of a dish you would order in a restaurant in Italy.
All of that walking and moving when I lived in Italy (I had no car so every errand was done on foot especially my solitary Sunday walks from my apartment near the Vatican to the city center and beyond). Once I returned from living overseas, I went back to my car and driving everywhere so those pounds of muscle became something else.
Then, before I knew it, I gave birth to two children - with my daughter, the scale was in the 200's and everyone thought I was carrying multiples; with my son, I lost weight until the 6th month of pregnancy and at my heaviest right before delivery I was 170-175. I creeped up each year, it seemed, little by little until I was hovering more in the 160-170 range than the 135-145 range even 7 years post the birth of my second child.
It does not sound like a big difference but it is when you think about height. I was never ‘overweight’ but I was definitely heavier than I should have been.
THAT BEING SAID IN NO WAY DO I THINK MY BREAST CANCER WAS CAUSED BY MY WEIGHT. I understand there are “risk factors” to cancer and that people like to think about prevention and how to avoid these diseases but the fact remains that even at my “heaviest” I was nowhere near obese and in fact smaller even than many people in my life - all of whom have never had gotten breast cancer (that I know of).
I have exercised for an hour a day since April 2014. I meditated daily since 2015. I did yoga and other stress reducing exercises. I gave up all processed foods in 2014 when I was misdiagnosed with a corn allergy. There is an idea of “prevention” and “it won’t be me” that does not quite exist. I should have never gotten breast cancer but I did.
Now post cancer and the huge amount of weight gained during treatments, I decided I was ready to get moving. This was something I was not ready to do until after I finished treatment and healed from radiation.
I began slow but stuck with it. The weight began to come off but so slowly. I was eating super clean and not much of anything and moving but my weight froze at 158-160. I could not lose any more. I met with the integrative medicine doctor at Sloan and he recommended that to limit my risk of recurrence I should weigh 147 pounds.
I was incredulous. I was already working out daily, eating so healthy it was ridiculous and I straight out told him I cannot lose anymore - I lost 20 pounds and that is all I can do. He told me to get the book 10 Day Smoothie Challenge by JJ Smith so I got it. (Again, I am very medically compliant).
I began the cleanse on September 12 2017 and did it until September 20 2017. In those 8 days, I dropped 10 pounds. The only reason I stopped was because my dad was being admitted for open heart surgery and I could not get smoothies while I was with him. However, since that smoothie challenge, I have found that I am not as hungry, that I am not interested in eating as much volume and I am keeping the same routine for some parts of my diet plan.
I did the modified cleanse meaning I ate a small lunch. I also snacked on veggies and apples and unsalted nuts throughout the day, as needed. I continued to bring these snacks with me when I was away from the cleanse and away from home. I have been eating healthier and feeling lighter. My weight is now 148 pounds. I am 1 pound away from the “suggested” weight.
I did not do this to get “skinny” - to be honest with you, even when I weighed more I kind of still looked the same. I carry my weight in my stomach so I either look pregnant or I do not. That being said in June when I was at my heaviest, you could see the weight everywhere. I am including photos to show my journey here in this blog.
I hope you, when you are ready, consider getting fit in a healthy way. Make sure it is not too much for you. Do not stress your body during treatment. I have never appreciated just being me before - now I love every inch of me even the inches that used to house my right breast. I hope you can be at peace with your body. I love my body even when I weighed the most. All of this is post cancer though - I was the 16, 26 and 36 year old who was not happy in my own skin and now I am just so damn happy to be alive and my focus is staying that way as long as possible. I know weight is not the key to this but I figure it is never a bad thing to be as fit as possible…
This is what I do in the time between..
Busy times lately trying to get about the business of being a (hoping to be) survivor. It has not yet been a year since my diagnosis and as with everything else, time really does heal all wounds. There are times that I forget about what I have been through (until I look in the mirror).
This was always the goal, to get through it and then to put it in the rear view mirror and get back to the business of living but it does not always work that way. No matter what, cancer is a part of my story, a part of my plot and it is something I have to watch and actively attempt to keep from coming back - or at least, that is how I feel. This feeling is a big part of why I am blogging, too, to keep sharing my thoughts and experiences for others and even just to keep my family and friends informed of this big thing called life with cancer. The main thing behind sharing my story, warts and all, for those who are in this world with me dealing with this disease. I have heard from women in Ireland, Australia and right next door in Brooklyn who have all said they felt the same way and/or that they understood what I am writing about and that is so damn powerful and empowering.
My focus is, of course, to be cancer free and I guess "cured". I was told that breast cancer that is Stage 0-3 is curable; stage 4 is not. I want to be cured but I also know that really it is not something I can control. I understand that cancer is a wily bitch of a disease. I know that I can be no evidence of disease as I was post surgery but still have things going on that I do not know about. The human body is a mystery, even our own bodies.
I am now so open about my experiences with the disease that I am building a community of people who are also dealing with their cancer plot twists and I am no longer hiding from the facts that cancer does, at times, kill. I am learning of people who have done everything "right" and still did not get to be a survivor. I am doing all I can to not fall into that category but I do know it also takes miracles, faith and luck. Yes, luck.
Most people are walking around with the potential of cancer in their bodies but not everyone gets cancer. I wrote about this in my review of the AntiCancer book --> learning-about-the-beast-breast-cancer-anti-cancer-book-review.html. So for those of us who do get cancer, it is like entering an alternate universe where your doctors have to hurt you to heal you and the question, "Am I ok now?" is most often answered with a "Well, for right now, we do not see any evidence of disease BUT..."
To help with this "but", I am doing the PALLAS worldwide clinical trial (more here lets-get-clinical-clinical.html). As I have written before, this drug is FDA approved for Stage 4 breast cancer - it turns off the proteins that drive cancer and comes with a whole slew of potential side effects, such as low blood counts. I take the drug for 21 days a month; 7 days off and then the next cycle begins. My body and blood counts have been in the words of my oncologist, "Perfect." on the trial. Some folks need to get the equivalent of the Neulasta shot we did post chemo to increase our blood counts. I did not need that shot so yeah! At this point, I am at day 15 of the drug and my counts are probably going up again now (they did seem low at my last blood work on 9/12 but oncologist said "perfect" so that is what I will accept as truth).
To help with the other BUTT (that of my weight and fitness plans), I will also share about my visit with the integrative medicine doctor at Sloan Dr Deng-
I also have written about changing my eating and exercise habits to help get fit. Breast cancer loves fat cells, I am learning. Many people have asked me about my "clean" eating and I wanted to share about it along with the alternative medicine doctor's appointment I had at Sloan.
Once I finished treatment, I stopped eating meat, dairy and processed foods. I added in more vegetables, lean protein with fish and chicken (all antibiotic free and organic) and I added in soy milk and soy yogurt. I learned from Dr Deng that I should avoid soy in large quantities as it also has hormones. I can have a soy yogurt but not add in extra soy milk with it.
With these dietary changes I also experienced an increase in grocery costs. Holy moly it is expensive to eat "well". Also, I was not seeing a change in my weight with the small amount of foods I was eating. I would have a smoothie in the morning, wheat pasta and fish for lunch and a salad for dinner with nuts during the day for snacks and a soy yogurt. That was it. Along with that, I was doing about an hour of cardio a day almost 5 miles total of movement per day. And with that, I was stuck at a 22 pound weight loss and no more. Really those 22 pounds were a fight but once I lost it, the scale was not moving anymore.
When I met with Dr Deng we discussed a bunch of stuff around terrain, herbs, supplements, diet and lowering my risk of recurrence. He was happy I knew as much as I did from my research so he did not have to cover basics. When he examined me, he said right away that I have to work on my waist line. My waist line has always been an issue - I look perpetually pregnant if I am being honest and I looked this way even before I even actually was ever pregnant.
He suggested that I drop just 10 more pounds. Ha. 10 more pounds when 22 was so hard to lose?? It seems impossible. For the longest time, I have been making smoothies in the mornings for breakfast with kale, spinach, orange, banana, strawberries and mixed berries with water and having that WITH a carb like a whole wheat bagel and/or whole grain english muffin. Dr Deng suggested I expand on these smoothies by doing the 10 day smoothie challenge using the book by JJ Smith. I got the book yesterday and began the cleanse last night.
Why? 1) I am vain and would love to weigh close to what I weighed in high school - who wouldn't? 2) I am nothing but in love with a challenge - oh breast cancer and 2 kids and working - let's do it! So now I am going to attempt to do the smoothie challenge but with a few modifications. I will be eating food at lunch time. I cannot get over not chewing. With the smoothie plan you can have nuts, fruit and veggies in small portion sizes but I am also going to include lunch.
So today, I had my smoothie mentioned above along with a handful of almonds. At lunch time, I had an apple. Then I had a 1/2 whole wheat pita wrap with chicken salad. I had a handful of nuts and now I am having my dinner, which is another smoothie.
I have no clue if this will help or not but I am looking forward to working on abs - on finding abs first and then actually having them. Anything I can do to keep my risk as low as possible is what I will do and along with that, I will try not to get too obsessive because at the end of the day, I am not in control. I am praying and hoping I will be cured but it is not truly all in my hands - only part of it.
What are you trying to do post breast cancer to regain a sense of control? I will let you know if I can maintain this smoothie challenge...
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