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?
A Post for My Staten Island Sisters About Borough President Oddo's Breast Cancer Screenings
There is more to my story than just girl gets mammogram, girl gets diagnosed, girl gets cured (God willing). I want to use my platform, my network and my words to help others know what their risk is what-is-your-breast-cancer-risk.html and also to be informed enough to make decisions about how to best know their boobs.
Breasts are changing and a big focal point of our lives as women (I wrote about my complicated relationship with my breasts here complicated-history-of-boobs-a-treatise-by-a-breast-cancer-patient.html) and for all of you out there with two healthy breasts may they stay that way forever.
However, 1 in 8 women in their lives will be diagnosed with breast cancer. Most women diagnosed are over 50. I was 39 years old. Upon my diagnosis, when I sat with my gynecologist he informed me that he sees more and more women YOUNGER than me being diagnosed with breast cancer right here on Staten Island (Hi, Dr Prue - I am sharing your amazing self again). The ruling for screening mammograms is now 45 and up - I would have been dead if my first screening was at 45.
There is a stop gap of community based options sponsored by Borough President James Oddo to help any woman get screened when and if she wants (and she SHOULD want...). There is sometimes a resistance to going to get that screening or managing the health insurance labyrinth to get it done - I get it. There is also us as women who are busy doing, doing, doing for others - whether it be our husbands, our kids, our parents, siblings, so on and so on - well you get the idea.
Everyone I told about my diagnosis took the opportunity to "confess" to me that it had been so long since their last mammogram or that they never did a mammogram. Everyone is shocked to hear someone is sick and it hits them but then, they can move on. They can get distracted by life and all of the concerns on their desk, on their life and on their hearts. For those of us who have this diagnosis, it is easier to see with clarity and to prioritize ME - I know I need to practice self care and follow doctor's orders and get treatments and/or surgeries and/or whatever I needed to do to hopefully be cured.
For you, sitting there, you do not know - you are not sure what is going on in your body. I do not think everyone will get breast cancer but if 8 women are reading this right now, 1 of you will be diagnosed.
Please take advantage of things in our community here on Staten Island (which has the highest rate of breast cancer in all of the boroughs of New York) to get screened, to get knowledge and to understand that sometimes breast cancer is not due to hereditary factors (family history has to start somewhere), it does not always show up as a lump in your breast and that understanding your risks is not as simple as checking boxes that say "no risk".
There are free Uber rides to get you to your screening --> find out more here www.silive.com/news/2017/09/free_uber_rides_to_brest_cance.html. There are also days where there are screenings available on Staten Island --> check it out here: www.statenislandusa.com/news/bp-oddo-announces-mammography-screening-dates-for-2017.
Know that having cancer is not a death sentence, it is better to know than to not know and it is also better to have the screening and be "clear" for another year of fun until it is time to be squeezed again. I am here if anyone wants someone to hold their hand through it or needs assistance.
As a breast cancer soon to be survivor, I can tell you that I personally cannot handle when someone calls me "brave" or an "inspiration". I do not feel I was brave because I did not ask to get breast cancer and if given the choice between getting it or not getting it, I would gladly have opted out. Obviously, this was not an option.
I also do not feel like an inspiration though I have been lucky enough to connect with women who are in earlier parts of this process and maybe just maybe I have helped them a tiny bit and that makes me feel so happy.
Instead of those terms, I have decided that I would like to be called "tough". Tough is walking in to your own mastectomy walking-in-to-your-own-mastectomy.html, tough is working full time during 8 rounds of chemotherapy and tough is being a mom (in general - all moms are tough) and doing it with the diagnosis over your head. Oh and tough is probably in my mind because as a child of the 1980's I grew up to "Hangin' Tough" by NKOTB... (duh!)
I have found ways to manage, in the time between. I meditate, I exercise and I live each moment of each day to the best of my ability. Lately, that ability continues to improve and it is how I have found myself ready for my own next step when-god-closes-a-door-he-opens-a-window.html.
A big part of my healing process has been this blog, this unmasking of myself as one of the 1 in 8 women afflicted with this disease. When I got "sick", it was the best I have ever felt in my life. I was running around at warp speed, working full time and juggling all of the various roles and tasks that are in any mom, wife, daughter, sister, employee's life. I was doing it with aplomb - in fact, I could not believe people had complained about "having it all" I had finally found my own way to "have it all".
And then, it all came crashing down and each ball dropped and slid away as the focus became singularly and only ME, myself and I. I went from putting everyone else's needs first to having no ability to do anything about any one else's needs. I demanded help, people demanded to help me - it was a good mix.
I was lucky - so lucky to have been diagnosed. I am not kidding when I tell you I had no symptoms, no lumps, no family history and if not for my screening mammography, I would not be here today.
My children are tougher than tough - they have watched me wilt away, losing each hair on my head (and the rest of my body) and they saw their once vibrant do it all mama reduced to a puddle on the recliner and mainly in my bed. But they also saw me get up every day and go to work. They saw me put that wig on, straighten it and smile on the way.
I kept smiling and smiling to the point that I think most who knew the real story and what I was going through thought I was nuts. There were no chemo rooms as fun as mine. I was out there, loud and proud to most everyone who had no choice but to know - like my chemo nurses, my oncologist, all of Sloan, workmates and family and close friends.
But if I did not know you know you then I hid, I sat back and watched you thinking if you had any idea how go@damn lucky you were to not be bald, to not have cancer, to not deal with the uncertainty that is now a daily part of my and every other cancer patient's life.
Do not pity me though, I found more strength in baring myself to the world in showing my scars and my struggles I have found a new more vibrant toughness that is out and open for everyone to see. My children see it, my husband who has been unwavering in his support sees it and to all of you, I hope you see it, too.
My name is Lisa, I have one boob and I am the toughest broad I know.
My whole world changed on November 29, 2016. I was diagnosed with cancer and had no idea how the hell that had happened. My mom was crying wishing it was her instead of me. My children did not know yet. My husband was in shock. My dad was just absolutely floored and my brothers were on the floor with him.
I had been running a semi-successful business called The Next Step www.thenextstep1234.com and just accepted my first full time teaching gig - if there could be worse timing for cancer, I did not know if it was possible. I mean a diagnosis of cancer always sucks but getting it during your first full time job in several years is less than ideal.
During my testing, surgery, chemotherapy and even some of my radiation, I spent a lot of time "hiding" - I would not leave the house without a head scarf on or a hat - it had to be a wig of some sort only.
I would not allow people to corner me to talk about it because I did not have anything to share (in my opinion). This is rare because I spend a lot of time talking and sharing in general. I have made an income on my thoughts and opinions on all things professional and collegiate and now here I was speechless. Cancer had robbed my voice. I was hiding and I did not know how else to be.
I looked in the mirror and did not recognize myself. I was bald and missing a boob. For some time, I was swollen and disfigured on the right side of my chest. My mastectomy was to the bone of my chest wall - there is no meat to stop the feeling of bone grating pain when my children want to lean their heads on my right chest.
My focus shifted from inwards to outwards seemingly over night but it was a long drawn out silence. I kept a personal journal during the process of diagnosis to surgery to recovery to treatments. Slowly I started keeping my journal on this blog in June and then finally in July, I went public and matched my name and my alter ego at The Next Step to this site.
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