The Time Between Is
A year ago today was my first meeting with my oncologist at Sloan. Before that, on December 29 2016, I had the meeting with my surgical team to go over the results of my pathology. It was overwhelming and although I already knew I had lymph node involvement (we were told as soon as I woke up from my mastectomy on December 16), it did not really compute, you know? I mean, I knew that meant I needed "chemotherapy" but I had not a clue what that meant at all.
Ah, ignorance really is bliss. I knew it was big and I knew it was something I had never ever envisioned myself doing...like ever. I think, though, this is true of all of us no matter our family histories or our backgrounds, "risk factors" or lack thereof, etc. No one expects to be told they have cancer and no one WANTS to get chemotherapy. No one.
I felt my oncologist's pain as she sat with us a year ago today for almost 2 hours (or more maybe) going over all of the ins and outs of what chemotherapy I would be getting, why I was getting it and about the side effects and how to help/manage said side effects. She wrote everything down for me in amazing handwriting, filling pages of information for me. It was an amazing appointment and one that without the written notes she wrote down for me, none of it would have sunk in.
At this point, I was working full time as a teacher, I even went back to work early after my surgery to be back to "normal" as soon as possible. It was a relief to have the cancer out of my body and I knew deep down that this whole chemotherapy thing was going to stop me from being "normal" and I was scared shitless. I had no one really to commiserate with other than my angel, my sherpa, who Sloan connected me with who quite frankly saved my life with these --> tricks-for-treatment.html for chemo.
You see, chemotherapy breaks you down. It strips away your hair, your dignity, your brain, your ability to "do anything" so that your body can ironically heal. It is quite confusing and I know there are a lot of people who are pressured from family and friends to forego chemo and instead to lick a unicorn but really, chemotherapy is one of the best tools out there to hopefully kill cancer cells.
When I began chemo a week after my first meeting with my oncologist, I was prepared and yet totally unprepared. You see, no one knows how their body will respond to these drugs. As someone who rarely took an advil, who didn't drink, who never took drugs, well, this was all uncharted territory for me. (And yes, I know I'm a square... I don't even drink coffee... what a dweeb. I mean, if I knew I was going to spend the big 4-0 getting pumped full of all kinds of shit, I would have imbibed a hell of a lot more.. .or period lol).
I survived chemotherapy and I worked full time during it but I could not do much else. I was not able to care for my children, to cook, to clean, to really move beyond that school bell at 3pm when I went home from work and just became a vegetable.
It was hard as shit. I was told I would have support, that everyone would be there for me but the thing about chemotherapy is that it strips you down to nothing. No matter who is "there" or not, you can barely notice. You are just functioning at the barest minimum. Still, I worked. I got up each morning, put on my wig, my lipstick and went to work. As a teacher, I was exposed to germs, the flu and more. Luckily, I did not run a fever during chemotherapy. I did learn how people can be nasty and heartless. I let it go here --> an-open-letter-to-me.html.
If you are here, at your first oncology meeting where I was a year ago today, you got this. Trust in your self, in your body. Do what you need in order to survive this process. God willing, you will never need to do it again ever. Remember, though, our sisters and brothers for whom chemotherapy is an endless routine to keep them alive. Pray for them. Pray for us, all of us, that a cure will be found. In the meantime, drink lots of water. Rest. Listen to your body and read and share my post about treatment tricks (link below). This is what I do in the time between...
I am pathetically positive. What does this mean? It means that despite my life experiences and recent foray into the world of BREAST CANCER, I am still really really sure I will NOT die of cancer. If this isn't positive thinking, I do not know what is. I was always on the outside a positive person but on the inside, I was the person who prepared for the worst and hoped for the best. This is not positive. This is planning for the inevitable BAD thing and maybe, just maybe manifesting said bad thing with all of the posturing, worrying and planning.
Now, I find myself to more often than not be on the side of expecting the best and planning for the best. This is a radical change for me. I was the person who got Straight A's in college but still knew I failed every test as soon as I put down my pen and handed it in. I was pathetic period.
At this point in my life, I am more informed and more well read on all things "cancer" related and adjacent. I understand, in some ways, my risk for becoming dead from cancer and yet I am incredulous thinking of it. In my heart of hearts, I am convinced that I will not die of cancer. It is quite shocking for me to be in this mindset after a lifetime of being convinced of doom and gloom without even a scratch on my health record. I am the person who got a million dollar life insurance policy for $69/month after all. Health has been my currency, it has been who I am inside. Just always healthy BUT not always happy.
Every night, I pray for me and my children to be "happy, healthy and safe" and I have been doing this for over a decade now. It is funny how I always prayed for health but never appreciated it. Despite my glowing health, I was a bundle of anxiety and nerves on a daily basis - nah on a minute to minute basis. Now my health is (I guess) "shit" but yet I am more confident, more comfortable and more focused than ever in my life on the GOOD.
Does this mean I do not worry? Ha, no not at all. I do still worry and it creeps up behind my shoulders whenever I am not looking, this fear, this panic, this feeling of "why does my side hurt - is it cancer?" but when it does show up and hit me, I hit back with this sense of peace, this internal calmness that I have never had before in my life. I credit my faith for this feeling of peace as well as my ability to numb myself with meditation, hypnosis, prayer and good thoughts.
I am treated at the number 2 cancer hospital in the world. I am surrounded by a support system that rocks. My children appear to be "normal" despite the fact that I was at one point not quite sure I would live, however briefly I thought that a child picks up on these thoughts more than you can know. I am back to fighting form and feel (knock on wood) OK. I mean, I am not perfect and never was but all things considered especially when you think about and read the side effects of just a handful of the medication I am currently on NOT to mention the surgery, chemotherapy and radiation I did just this past year, well, I am really lucky.
Being put into menopause and given tons of steroids and chemotherapy led to an immense weight gain. Having a radical mastectomy means that my right side is always a little off and sensitive to pain and pressure as when my son accidentally bumps into my right chest area and I see stars for hours (sometimes days).
The chemotherapy I started a year ago this month leads to tons of side effects that I deal with as best I can. There is chemobrain (this is so real; there are times I feel so off but then times I feel so "normal" but all in all, I lost a bunch of brain cells and it is what it is) and neuropathy (pain and tingling in hands, feet, legs, etc) but it is all manageable because I am still alive.
Every 3 months, I get an injection to stop my ovaries from working as I had a hormone driven type of breast cancer. I have been in medically induced menopause though since after my second chemotherapy in February 2017 so almost one full year without having that monthly reminder of being a woman. My mom did not go into menopause until she was late 50's and I abruptly changed over at 40. I take a daily anti hormone pill that also strips my body of hormones. There are so many side effects to these things on their own and together and yet, knock on wood, I am surviving it.
When I go in for check ups and mammograms or other medical tests, I get PTSD and worry hard. But I survive it. When I hear about my friends losing their battles, I get a feeling of the flu over my body, pain in my extremities and more. My ability to feel emotions and sadness now impact me from my head to my toes whereas before it stayed in my chest and my brain. I worry for my friends who are still dealing with scans and spots and nodules with the overarching fear that the goal of all of our treatment is really not to cure us but to stop disease progression. Cancer wants to progress, it wants to kill, it is its function. Stopping it is what I focus on doing for me and to hopefully help others figure out their plan to do the same.
Despite all of that, I am still sure in my body's ability to heal. Confident in my own jagged, broken down body that it is inherently curing itself along with the doctors' help. I cannot live any other way. To me, this makes me a new and improved version of me but also, deep down, I like to call myself "pathetically positive" or "stupid positive". As a former financial services professional who worked during the subprime mortgage explosion, I derided the big push of all financial services firms hiring "risk managers" or "risk compliance officers" or "chief risk officers" because I knew that people cannot adequately quantify or understand risk. If we did, none of us would get married or have kids. I feel I hired myself to be my own "chief risk officer" with the blinders on to navigate me through this world of broken down health, to get me back to fighting form - like a government bailout but for my own cells and shit.
This is what I do in the time between.
I have lost people to breast cancer a few times already since being diagnosed myself. Most of the folks I have lost, despite never having met in person, are still mourned by me -- I wrote about it here --> on-mourning-forbeth.html. Unfortunately, since Beth's death, a few more women in my social network sphere have died from this beast of breast cancer.
And now, I lost someone I knew in real life, too. I have known Marie D for years. She was the woman who always answered the phone at my mom's job and when she picked up, we would chat for 5-10 minutes about life and stuff. She was always so sweet and really interested in how I was doing, in general, with life, work, kids and stuff. Whenever she saw me, she hugged me and was genuinely happy to see me. She loved seeing my kids and how they grew and grew.
She was diagnosed right before I was or right after - my memory is murky. My mom was so sad because Marie was diagnosed with Stage 4 de novo and we knew already that was not good.
Life circumstances can really suck sometimes and Marie had a tough time dealing with the diagnosis and managing her treatment. She stayed local due to reasons that suck - financial and other. You see, even for me, with my husband and family all helping, getting to Sloan multiple times a month for treatment and appointments costs a lot of money. Plus, there are other bills and requirements to get the "best treatment". It is not a level playing field at all and really even with the "best treatment", stage 4 sucks balls and kills left and right.
The last time I spoke to Marie, she called me to talk about her upcoming mastectomy. She had done chemotherapy for months and then was going to go in for the surgery despite the doctors knowing she had spots all over her liver, bones and a few other spots. She and I spoke and I cried and told her I loved her. She was afraid of the surgery and I told her that she already had done the hard part - chemotherapy is so harsh and she had been doing it continually for months and months. I told her all about my surgery and what it was like during and after.
Shortly after her surgery, she took a turn for the worse and then just this week, she died. I feel gutted and also unable to help. I mean, I could not even see her in the hospital - I just could not do it. My mom went and visited and sent her my love but I just could not physically see her so ill and not freak out.
I did freak out anyway. Today was the wake and I just could not go. I woke up feeling off and confused. I dreamt that I was at work again and someone was trying to kill me with a person-hunting dragon and I was climbing high up to get away from it. Subtle, huh? I guess the dragon was cancer and the job thing was due to the issues I had at work an-open-letter-to-me.html before I was terminated...
I am not proud of myself but this is how I had to exercise self care. I get that breast cancer kills. I have seen it from a distance and now more closely, though with a self imposed distance. I am still trying to squint at it from afar and deal with it as a (God forbid) potential outcome for me, my friends, and others who have walked this road as the 1 in 8 but it sucks balls. It really does. I am forever hopeful that it will not end in my untimely demise and that even more so a cure will be developed and work for the 1/3 of us who become stage 4 after having breast cancer.
Bravery is only possible in the face of this because I truly try to stay as positive as possible. I pray for Marie D and her family and friends and I hope they understand why I had to stay away. Cancer sucks.
This is what I do in the time between. Rest in peace, Marie D.
We made it, friends! It is 2018. Many of us are still actively fighting cancer, some of us are done with treatment, some of us are stage 0, stage 1-3, stage 4 but all of us are praying and hoping or wishing for a cure to this disease.
No matter our stage, diagnosis, age, life issues, we all are aware that our life is potentially in trouble or could be lost based on the state of our cells. It is tough to understand and even tougher to get straight answers from medical teams as the fact remains that no one knows. The future is not clear but TODAY is. We are cultivating a life of living in the moment - or at least trying to do it.
I try and fail on a daily basis to keep my thoughts in today, to let things flow off my back and off my mind to stay present in the RIGHT NOW and not the "what if" or "what can". This is not easy for someone who used to be such a control freak, type A personality that everything was planned and then re-planned, everything said to me or about me was taken to heart or caused me to lose sleep or lose my sense of peace.
I have come a long way from this old me but I am still in need of improvement. I am doing all I can to stay as healthy as possible all the while knowing that the future is not promised to anyone. I am focused on doing everything I can to stay healthy while understanding that I have to only think of today. Thinking of tomorrow, a year from now, two years from now, etc is not something I can do without fear. I do not think anyone who has / had cancer can think long term without the constant "what if?" but I want to try to make it much less constant.
When I was filing my paperwork to be a non profit to help cancer patients get back to work, I was thinking about what would happen "what if" and it was making me crazy. I find when I am stressed or perturbed, these thoughts hit me more. When my kids look at me and ask, "Is the cancer gone?" it hits me right in the gut. Of course, I tell them yes but the truth is we just do not know.
I want to manifest for myself this word peace - a life where I live in today and do not ruminate over yesterday nor think about tomorrow. I am focused on finding a job which means I am thinking of the future in terms of being an employee again but I think after all I have been through, I can do this day by day.
What do you do to help yourself live in the moment?
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?
I have noticed lately that there is this huge improvement in the way I just manage life but I will never thank cancer for anything so I am just going to chalk this up to me being this “new and improved retro weight me”.
When I was diagnosed and in the middle of the worst shit anyone with cancer can explain to you I still kept things positive, laughing, smiling and just overall being like, “This sucks, but it could always be worse.” People constantly told me how amazing my attitude was and how they were in awe of how I chose to be and I was always surprised because as I told them it was not a choice; it is just who I am. I have spent a lot of time in my life making lemons out of lemonade, I guess.
I never ever expected to get sick, though. Like really sick. I guess I thought I could keep being SuperWoman forever, keep bottling up my feelings forever, keep moving at the speed of light forever. Now I know those things are not what I want to be, not how I want to live. I want to enjoy life, to be present in the moment and to be more than just “mom” (although it is the best title I ever have had, I know this time is fleeting and that the kids are growing and I am sitting here with many years of being the only caregiver under my belt and it is time to expand the operation).
I hate the idea of people pitying me. I mean, I get it, it sucks to have/had cancer but it can suck more and for people out there who think, “Oh man, I am so sorry for her. I am so happy it is not me.”--> I can just say I used to think this way, too. I used to think this whenever I heard someone else’s bad news. Now, I do not think this way anymore. Instead I think, “What can I do to help that person.” And then I do it.
This is why pity is a useless emotion. It makes you feel as though you “did” something when in reality all you did was think for that moment how much more lucky/blessed/happy you were compared to that person and then a few minutes later, the dog crapped in the house and you forgot all about that other person and how you should be happy you don’t have to deal with what they do.
I think everyone on hearing someone else’s bad news should just be like, “What can I do to help.” instead of internalizing that shit right away and forgetting it.
My superpower is that I know life is precious and worth every god-darn moment and that there are no do-overs. When I accidently pop an extra sudafed, I do not give a shit anymore because I know I have had poison pumped in my veins for fun. I am the person who will try to help you no matter what. However, I, too, have my limits. I have learnt the hard way that being superwoman is not so fun. It means everyone depends on you to do everything and you cannot get a moment to rest.
With my new superpowers, I can figure out what is important and put my energy on that. For me, what is important is love, laughter and the hard work that goes into being a well rounded person. It is hard to balance all of the different pieces of me and the things I want to do. Sometimes, I feel so many emotions at once I cannot manage them all so I need to decompress, meditate, exercise and do what I need to do to take care of me. I can do that all now, too.
I also know that worry and fear are useless. Having all of that fear in my life did not stop anything bad from happening - the bad happened, I got cancer. I know, too, that even though I got cancer that does not mean all I get know is pity and sad faces. I am me, I am irreverant and will tell you all about my fake boob and make totally wildly inappropriate jokes about random things. It is infinitely better to laugh at life than to take it too seriously. There is no “why me” over here just a constant laserlike focus on getting healthy and kicking cancer’s ass one day at a time.
What is your superpower?
I keep writing this blog post and deleting it and then redoing it. There are things that I guess are better off left unsaid but sometimes in not saying the things, it eats away at you or at me - it eats away at me so I had to write it, feelings be damned.
As this year 2017 draws to a close, I have to believe that the comeback will be bigger than the setback. What do I mean by this? Have you ever met people who have been through the wringer? Like widowed with 3 young kids and needed to make it and turned around and got themselves through school ALONE and became a powerhouse attorney type of comeback?
I know some people who have done these types of things and I just want them all to write a book on how the hell they did it. As I sit here, post breast cancer plot twist having lost my job and trying to work on my own comeback, I want to have some guidance, some roadmap so to speak of how to do this.
I am standing and kicking butt and taking names, applying to jobs, managing my family life with a renewed focus on ME, my husband and my kids. I had been pulled in many different directions lately stemming from the needs of other family members and I had to stand up and say, “NO. Enough. It is now time to do what I need to do for me.”
In my life, I have been the caregiver for many, many people. I have been the person who keeps it all together. Who makes sure everyone feels welcome and well and, well, I am DONE. I am writing this more for me than anyone else so if you are confused already, sorry. This is a note to me to remember that I matter, that my health, well-being, sanity and time are all precious and important. That I am a good person who cannot get lost in being a people please-r. I have 2 children not 10.
I promise to keep putting me first - to stop trying to be the superwoman I have been acting like again. It is so hard to let go of bad habits. It is not my responsibility to care for everyone. I have to be focused on my small family, our home, our life and let the rest go.
This does not make me a bad person - it makes me ME.
My New Year’s Resolutions are unique this year - I did not make any last year except, “Survive” and this year, I want the same thing but with a bit more.
1- Survive - keep on keeping on in my training to be a survivor. Keep exercising, eating right, keeping myself positive and on track.
2- Letting go- know that I cannot hold on to the pain, the hurt or the betrayal but instead need to stay light, lighter than air to do what I need to do.
3- Work - find my next step, my perfect job/income generating plan to make my life work to be able to stop having so much free time but to balance it with my kids and family.
4-Health - See, survive is for me, health is for the other members of my family. Remove all sugar, get us all on a work out routine, stop my husband from smoking and other destructive habits (sugar, no exercise, etc).
What do you want to do for the upcoming year? What did you find were things you had to let go to survive? What do you know about your comeback? What is your comeback?
So yesterday was The Big Squeeze time-for-the-big-squeeze.html and those of you who follow me on insta or twitter (what are you waiting for if you don't @thetimebetweenis and @timebetweenis, respectively) know I was given the "Negative Mammogram" (or cancer free news) for my left breast! YEAH!
I did not realize HOW freaked out I was about this damn test until the day before (as I posted about in the blog post about it on 12/20 to try to manage the emotions). However, in retrospect, I do realize I had been freaked out about this appointment for at least 2 weeks, if not more. The stress came out in other ways as I was in total denial about it. I mean, this is the new me, I practice gratitude, nothing bothers me, I am tough as shit and all that malarkey. OMG this cannot be. I cannot hide how I feel from myself so in thinking about how I shared about the other feelings of PTSD I experienced with the other testing I decided to do this quarter (because I am stupid - seriously, read this -> all-about-the-ptsd-post-breast-cancer.html) I am going to lay out my plan for how to manage these appointments in the future to help me overcome my insanity.
Some of the things I noticed before the big appointment...
Before the big day on 12/21, I had been obsessively "hiding" in my phone and Kindle to the point that my eyes were hurting. I find that after traumatic events or other weird things that have happened to me in the past, I become focused on always "distracting" myself and it is never a good thing. I love to read but to be reading until my eyes hurt is not a normal thing. In fact, it was hard for me to read books honestly and that is my favorite thing ever so I was just constantly starting and restarting books and not really reading.
Also, my sleep pattern was disrupted and although in all honesty I do find it harder to fall asleep post cancer treatment (this whole life after treatment thing deserves it's own post - note to self), I can normally sleep at some point. The past two weeks, I had trouble falling to sleep and also felt at a bunch of points that my eyes were just closed but I was awake. I also was apparently snappy and irritable with my husband and my dad. I mean, I often yell at my husband - I love him but we are exact opposites - but apparently, I was really in mega-bitch mode.
There were other subtle things like I found myself uninterested in eating and in preparing food. My appetite was gone and I guess I was just listless and not myself.
What I plan to do about it or why I plan to do anything at all...
Now, I know writing this and following it are going to be two entirely different things and I also know that no matter what, I will experience scanziety and/or fear during testing, and or other weird stuff that my body may decide to do that makes me worry like coughing too long and/or hip pain and/or anything that makes me go "Hmmmmmmmm....is that cancer?" SO as my big fuck you to cancer and the fact that I am at heart a nerd / project management professional (I have a certificate and everything, seriously, from the Project Management Institute and I am putting this bad boy to work right now), here is my "plan" on dealing with the SCANZIETY that happens before a medical appointment.
My Plan to follow whenever I have a big appointment related to CANCER:
1- TALK about my feelings - not just write them in the blog and expect everyone in my life to KNOW what I feel because they must read my blog.
I got this feeling standing in line at Five Below the other day that no one on line behind me would "know" I was a cancer patient - I no longer am bald and wearing a wig that might not "pass" as real hair, I no longer walk around with the pallor and fear of diagnosis permeating off my skin BUT the truth remains that I am still different and just like people do not know it by looking at me, my friends and family will not know how I am feeling if I do not communicate. *I found myself also pulling back from communicating with friends and stalk texting them because I did not want to mention my big appointment. When I was sharing stuff online too I was already pushed past my comfort zone because I was like DAMN what happens if I get bad news?
2- Practice self care A LOT before these appointments.
I had stopped doing the things that help me deal with big things -or that help the new me because the old me would have been MUCH MUCH worse than I was prior to this big test - I mean that instead of being oblivious to my inner turmoil as I was, I would have been all over it day and night obsessing over it meanwhile for this experience I was clueless how bad I was until the night before the big test. Self care includes exercise, meditation, girls nights, Yoga, buying new bathing suits (seriously, send help I am obsessed and have brought FOUR bathing suits and guys, it is winter and I am not going on a trip...) - you get the idea.
3-Remember that if I can survive getting diagnosed, losing my breast like bye felicia without any issue, undergoing 8 rounds of chemo, going bald, losing all of my hair, getting "laid off" the day after my last chemotherapy, 34 rounds of radiation AND then deciding to SHARE all of that publicly without flinching and maybe helping others in the process means that I am TRULY TOUGH and that I can handle whatever comes next. I cannot let fear guide me and make these events ruin the time I have in my life, no matter what.
I was hit with a bug, we all were actually snotmonsters, and I kept pushing myself to do more. I could not sit out on things knowing that last year at this time, everything was so hard for my family. Well, I made it harder by not listening to my body and taking a damn seat and skipping MORE stuff. When I look at my camera roll I am shocked at how much I did this month despite not feeling well AT ALL.
5-Trust God or something bigger than YOU.
I know a lot of people do not have religious faith but for me, this is most important, though I am putting it last. I know bad things happen to people all of the time but if I can just believe a little bit more that there is a plan for everything and though I do believe life is like a Choose Your Own Adventure book because we do make our own choices that if I trust in something bigger than me, in my faith, in my religious experiences and my decision to pray, hope and don't worry then maybe, just maybe I will not get so goshdarn "sick" over appointments and such.
What are your go to plans / ideas on how to manage scanziety and all that comes with being a cancer patient?
This is a tough week for me. I have not been sleeping well and everyone in my family is a "snotmonster" and all congested and coughing (including me).
Of course, this was making me think I should be concerned for me and my health given the whole cancer thing but then I realized that if everyone in my house is doing it, it should be ok, "should be" the operative term.
When I was feeling sorry for myself this morning, something crossed my Facebook feed that made me stop and smack myself. It is the story of a 5 year old girl diagnosed with DiPG the worst kind of brain cancer and given 9-12 months to live. That shook me right up and I am including the link to the YouCaring site so if you can, you will donate something to this family. I do not know them AND I am unemployed but I donated $10. I would have done more, if I could. I know I cannot donate or help every family who is hit with cancer for a child but I will say again that cancer sucks but it is so much worse for a child - give what you can here and if you cannot give, please share the link-> www.youcaring.com/parentsofaveryandyandemilyneill-1047204?fb_action_ids=10214612959054343&fb_action_types=youcaringcom%3Adonate.
Tomorrow I go to Sloan for my yearly mammogram and sonogram on my remaining breast (good old lefty). It is something that has been bothering me subconsciously and I think that is why I have been unable to sleep too well this week like at all. I have been tired and groggy and snotty (not the teenage variety but literal snot) since Monday (and even for some of the weekend, too).
My remaining boob has been prodded and checked at each and every follow up over the last year (with my clinical trial I was seeing my oncologist monthly for a bit and each visit I got manhandled lol going-to-sloan-monthlyor-not-more-about-the-pallas-clinical-trial.html) AND I check it every month on the "feel it on the first" campaign and it all feels ok. Tomorrow, though, is my first mammogram and ultrasound since the big Diagnosis and after that whole cancer plot twist last year, I guess it is normal to be freaked out.
And I think I am kind of freaking out. I mean, I didn't freak out a month ago or even a week ago but I am kind of freaked out now.
I am working hard on putting it all in perspective and seeing that family's story about the young girl being diagnosed definitely is making me put it in perspective and just take a deep breathe, meditate, pray and just deal with whatever it is. I know that my worries today, my freak out right now, is not going to help or even preclude any bad news from potentially happening nor will it make me feel better if/when I get good news, either - it is just a waste of energy to worry right now. I know I need to stay focused and smile but damn today, the day before I go in to sit in that waiting room in that robe waiting to be called and squeezed and prodded, I am freaking out.
I hope that I get it out of my system today but between everyone's cold, coughing and congestion (it is like leaky faucets over here, no joke) I just know I need to rest and not think about it. I should instead by thinking, well, it could always be worse so let me just enjoy today, right now, no matter what happens tomorrow, I have this time between and yes, we are all feeling yucky and I am exhausted and not at all ready for tomorrow but I will get it over and done and survive it because that is all I know how to do. It is how I got through chemotherapy just that focus to just get it done knowing it was something I had to do in order to get to "cured" or "healthy".
Did you freak out at your first follow up mammogram and sonogram after breast cancer? How did you deal with it? I know now for next year that I need to take better care of me before these testing dates come up because I do think if I did not feel so yucky and had been able to sleep better, I would not be as freaked out as I am ... (it is like a game of what came first, the chicken or the egg though because I probably did not sleep well because of the worry for the upcoming test...)
What do you think?
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