This month is my cancerversary --> its-my-cancerversary.html and for some strange mental reason, I decided to do a bunch of medical shit this month and I am really regretting it and recognizing how I had no idea how deep my PTSD goes after living through a real medical diagnosis and hoping and praying to stay healthy.
So just this month, I did the following:
I am doing the best I can to not think doom and gloom. I know deep down that my thoughts cannot change the results so why should I beat myself up and ruin my holiday season on the unknown. Until it is known, I can keep focusing on being "cured" or NED of being me of being free.
I shared my PTSD on instagram and so many people commiserated and knew what I was talking about (consider following me there @thetimebetweeenis or on twitter @timebetweenis - I am sharing it here with more detail to hopefully help someone else as they learn to navigate this new world in the time between...
I wrote all about being told the day after my last chemotherapy treatment that I would not have a job for the next academic year... I am not alone in losing a job during or after cancer treatment and I hope by being open about what happened to me, it can help others going through it.
I wrote something that is pretty raw, something I tried to glaze over in my Open Letter Blog Post here an-open-letter-to-me.html but found there was more to say about the whole being in active treatment as a breast cancer patient and being told the day after my last chemotherapy that I did not have a job for the following academic year (teacher).
I shared more detail on how this made me feel and how I am shaking it off and moving on to bigger and better things. I have found through this plot twist that I am not the only person this has happened to; in fact many people have reached out to me about losing their jobs or having to leave their jobs due to the affects of cancer.
I hope to move forward on finding a way to help people manage this time in their lives, these blank spaces on their resumes. (And wow, I just realized I have TWO Taylor Swift song references in this post...can you tell I have a preteen daughter?).
If there are any other blogs or websites that would like to have me write something for them, please reach out at firstname.lastname@example.org or find out more at media-me-sharing-my-breast-cancer-plot-twist-and-pinktober.html and here what-it-means-to-say-you-beat-cancer-media-portrayal-of-cancer.html. Please make sure you also check out the article posted below and share away from the What's Next Blog. Thanks! This is what I do in the time between....
365 days ago, I heard the words, "expect the call that is is cancer." - not quite as clean as the more direct, "You have cancer." but it was the first inkling I got that this whole mammogram/ultrasound/biopsy routine was going to be different for me than my usual experiences in the medical realm.
Normally, when I went to doctors and such, I would find out something minor - like the flu, bronchitis, allergy induced asthma or even my blood clotting disorder managing-diagnosis-from-super-woman-to-cancer-patient-in-two-seconds-flat.html. This was something that was more, I guess you can say, earth shattering.
I set up a countdown to this date (because I am a nerd) about 80 days ago. I know that time is what heals or it is what can kill me - you see, when I was first diagnosed I knew nothing about breast cancer and I remained blissfully ignorant for a long time. I remember being triggered by a Facebook post about someone who had died from the disease and it shook me so much I deactivated my account and did not go back until I grew a pair of balls - a new pair of balls that is because in my life I have always been pretty ballsy.
I left the country when I was 21 after being raised to "stay in the gate" by an uber-overprotective dad and grandparents. My mom left the family when I was 13 and almost died when I was 15. I got married despite knowing all I knew about how marriages can suck. I had two children despite helping raise my brothers and knowing that being a parent is one of those things that just does not make sense - my heart no longer resides in my body and all that crap. I present and speak in front of large crowds. I have written books and share them relentlessly because damn, I wrote stuff. None of that mattered though because when I was diagnosed, those reserves of bravery were like puffs of air, they were gone.
Sure some of those things are just normal things that everyone does but for me, they were all acts of bravery of defiance of being balls to the wall brave. Then I got diagnosed with cancer and all I knew was fear and more fear. I could not share my story - I was physically unable to do it. There was a block and it was me.
Once I began sharing, I began learning. I opened my heart and mind to others who have been through this plot twist and learned the hard way that some of them do not make it on-mourning-forbeth.html. Some of them do not get to see their kids grow up. Some of them do not get to even get to the point where they want to have kids. Some of them will never be able to have kids because of their treatments. Everyone has a story and it is not always a happy ending.
I was focused on getting to this year's "cancerversary" because in my heart, it means something. It means that I survived this year, this year when everything changed, when I could not be me, when I lost my hair, my breast, my job, my voice. I survived it and I am still here - I am loud and obnoxious, I use social media, I tweet too much, I post naked photos of my chest, I am here, I am trying to make sense of it all but I do not have all of the answers. No one does. I do not have a crystal ball. I have no clue what the future brings for me or my friends who find themselves to be the 1 in 8 but I do now that sharing and celebrating this tiny little achievement with all of you means something to me.
I was diagnosed a year ago, I went through diagnosis, surgery, chemotherapy, radiation and continued treatments (hormone meds and clinical trial); I went bald, I stayed half flat, I lost my job, I saw what my children went through to see their mom "sick" - really sick; I know what it is like to fear/plan for death, I pray every day that I am here to see my kids grow up, I know that breast cancer can still kill me but I pray and hope that it will not.
I celebrate because it was a year ago, time is passing, I am still here, I share my story and it DOES help others, people are in my life now I never would have met if I did not get cancer, I know more about how to manage life stresses because nothing is as bad as being told you have cancer (God willing, this will be the worst thing that happens in my life; it is not as bad at all as hearing your child God forbid has cancer so I will keep my diagnosis, thank you very much and pray for the families who have to deal with a child getting chemotherapy).
This is what I do in the time between. I originally had wanted to do something big today with decorated cookies and a celebration but instead, I am going to do the exact opposite. I am just going to live like I do every day since those words were told to me - I am going to survive and enjoy my day with my family and just decorate for the holidays knowing and believing there is no cancer in my body. Last year at this time, I could not say that and all of a sudden everything else was in perspective. So, this year, decorating my house without cancer in my body and going to focus on all that I have done in these 365 days and on what I can do today because that is all anyone is "promised" is today.
It is so damn hard to be "woken" up to this world of breast cancer in so many ways. Not just because of the knowledge that life is really short but also because it becomes clear that you are not immortal - that there could be a day when you die from this disease before your "time". No one knows what their "time" is but I guess we always think, pre-cancer, that it is really really far away and not even something to think about because what are the chances that it will happen "soon"?
And what does "soon" mean, anyway? I mean, it is just not something you spend too much time thinking about when balancing life with kids, house, family, jobs, stress of all kinds and even a puppy. And then BAM, you are diagnosed with an illness that could, in theory, be deadly. The dreaded "c" word and no one understands and knows what it is even after surgery, after treatment, after the whole 9-yards, there are still always countless yards to go because end of story is no one knows BUT it could always be worse.
In my opinion, "worse" is to be diagnosed Stage IV from the get-go and it was something I was panicked about, without knowing the correct terms or what it really meant, when I was diagnosed last year. I was so afraid that it had spread, that it was elsewhere in my body that I asked for a pet-scan. I wrote about it before on my blog and the greatest gift I got at that time when everything was so terrible was that I had no signs of cancer anywhere else in my body (or at least not from head to knees).
I think every day about those who were diagnosed Stage IV either first thing or after years in which they thought the cancer was "gone" - being Stage IV means that they will be undergoing treatment for the rest of their lives, that their lives will be ending sooner than they thought full stop as most people do not survive many years with Stage IV, and a lot more of terrible stuff - most importantly is that research dollars do not go to Stage IV.
I am a newbie at this but I am trying to fill the void left by the death of my "friend", Beth Caldwell. I put "friend" in quotes because although I feel she was my friend, in reality, we never met. We never spoke on the phone. We never heard the sound of each other's voice in real time but we connected on social media. I was in awe of what she was doing as a founder of MetUp (metup.org/) as someone, just about my age who was diagnosed as Stage IV at the beginning of her plot twist and she did so much for the community, even for a newbie like me.
It is hard enough to deal with loss but this kind of loss is something that is hard to share, hard to deal with because who can understand that what I mean when I say "friend" - it is something most people who have never dealt with a potential life threatening illness maybe cannot quite understand. I feel her loss, the community feels her loss and we grieve it. We think about what we can do to fill the void.
As most of my blog readers know, I am unemployed right now but when I saw Beth's husband sharing on social media about her death and the organization she helped to fund research for to help others with Stage IV, I donated and set up a small recurring donation in the amount of $10. For those of us who are "early stagers", please understand that 1/3 of us do still run the risk of being diagnosed with Stage IV cancer no matter how pink and fluffy we were during treatment. This shit can still come back and recent research has shown it can even come back 15, 20 years or more later and God forbid it can kill us still. The link to donate in her name is below. When you donate, her family gets cards showing it was done and it is something to make her life be not in vain.
For her children and husband, my heart breaks and I think there but for the grace of God do I go - it could happen to any one of us it could even not be cancer but something else some freak accident but for those of us who have been touched by cancer, we always think it could be cancer.
Beth already inspired me to write one other post about being a mom and having cancer but this post is the most important one for me to write for Beth; do what you can, give what you can to help make breast cancer less of a potential death sentence. To help Stage IV because they "need more".
This is what I do in the time between.
*Read more about Beth here, www.fredhutch.org/en/news/center-news/2017/11/beth-caldwell-impact-metastatic-breast-cancer.html.
Last year, on the day after thanksgiving, I went for my biopsy of the lump my screening mammogram had found, thinking it was just a waste of time and that in my heart of heart it would be benign because how could it not be? I had no history, no lump and no risk factors. The "lump" that was to be biopsied was so small it did not even register during self exams. It was like a small thing, what could it be but the need for me to listen to my doctors and wake up early on a much needed day off from my full time job to go and get this procedure done...
Ha. How wrong I was. That day, the surgeon doing the biopsy told me to expect the call to confirm that it was cancer - she knew by looking at it that it was cancer but would of course tell me to wait for the official word. She did not want me to be shocked when I got the call that Tuesday after Thanksgiving. So I had some time to let the "diagnosis" ruminate before I knew for sure but I just did not even believe her. I was sure it was a mistake but by Tuesday, when the call came in, I knew it was gospel truth.
I spent a year basically in treatment and/or recovering from treatment and as I get closer to my cancerversary, I want to share this video about all that I, yes me, cancer patient, pixied cut, one boobed Lisa, has to be thankful for in my life.
I know that my life will never be the same but you know what, I do not know how much I had before that was "better" - I mean, yes hands down I was healthier but I was not happier. Life is about being happy. It is about giving back. It is about helping others. I have said it before, and I will say it again, I would prefer to have never gotten the cancer card but I got it and now I have to make the best of it -- and damnit, I am ... Check out my video please and continue to share and be a part of my story in any way you want to be - I am so so thankful for each of you! Happy and blessed Thanksgiving to all! Love you, Li
Today, I was inspired to write this post from the sermon at Mass. I have been going to mass throughout this plot twist of cancer; though I did miss some weeks. I did, however, give up on getting my kids to go every week. I would run out on a Sunday night at get the last mass in my town at 7:30pm, the last ditch attempt to getting in that hour of peace.
One week, months ago, I was feeling very anxious - thinking what would happen if the cancer progressed, fearing death and I dragged myself out to mass, though I felt like curling up in bed and crying. That day, the mass was about Jesus curing the lepers and how He cures us and it gave me peace - I get it if this is not your thing - you can find your thing that gives you peace, I pray you do.
Today, both kids came to mass with me and my dad and my mom (which is ironic and funny if you know anything about my family history or just read this a-tale-of-two-novembers.html or this the-oh-sht-playbook-or-being-my-dads-daughter.html) and it was about talents and using your talents the way you are meant to use them.
This got me thinking and hence it got me writing - I always thought my talents were well, I did not know because I always thought of talents as being singing or drawing but in reality your "talent(s)"are your mission - the things you can do better than anyone else or that come easy for you AND that I guess, you enjoy doing.
In that case, my talents include writing, resumes, writing, educating (BUT not less than college aged; I learned this the hard way) and I guess balancing lots of stuff oh and of course being positive.
A former friend of mine had called me "Positivo" before I had anything that I really needed to be positive about to survive. But, being positive has been integral to my life and my survival, in general long before I heard the words, "You have cancer."
As I look for my next step (ha, it never gets old - see www.thenextstep1234.com), I am thinking about the different things I am good at and how those skills and talents can be used in a way to help others and I am just open to it. I know I can do more and that I should do more. I know that I want to create a non profit as soon as I fix my full time situation how-to-take-the-next-step-after-cancer.html.
How do you use your talents? What are your talents?
I have shared before how I ran a small business www.thenextstep1234.com and learned a lot of my social media tricks through that adventure. I use those social media tips and tricks to share my story, to get it out there how to survive with breast cancer. I used press releases many times in my small business to promote the books I had written and my business, too. These press releases were expensive though - I used PR Web and it added up to be quite a chunk of change.
I found a new provider of press releases and wrote one - the photo options did not work but I was able to do the below- check it out:
A tutorial about the different ways to stuff your bra if you opt to not reconstruct after mastectomy oh and also about going flat post breast cancer...
I wanted to showcase the new makeup I got that is in theory safer and let's just say, there is a reason why I have never done this before and probably will never do it again - if you want to pee your pants, check it out below...
So this post is hard for me to write. It is hard sometimes for me to be so damn honest about the reals ins and outs of being a mom, a wife, a cancer something -- because I still just do not know what I am in terms of cancer. Am I a former cancer patient? Am I a cancer patient, present tense? I just do not know.
I do know that last year I was diagnosed and everything changed. I focused on keeping one foot in front of the other, working when I had my job and being as present as I could be for the kids and my family despite the fact that there were times I was scared and I had no voice and I could not understand how/why this happened to me...
As I have said before, I got over the whole pity party as quick as I could. I had help, I had someone who had been through it before who without, I would not have made it. Lori is the name of my sherpa and she is still a part of my life, though we still have yet to meet in person.
When I started at Sloan, I was given the option to join a "patient helpline" program (cannot remember what it was called) and anyway, that day I said, "yes" I was called by Lori. Her first words to me were, "Welcome to the club you never wanted to join!" I remember sitting on the phone with her even though I had to drive from my first consult on Staten Island to go home.
I had yet to even set foot into Sloan but here was this lifeline, someone who had been through it before as I knew no one who had had breast cancer.
She promised me she would be there for me every step of the way and she was and continues to be even now; I was her first patient that she helped through the entire process and she continues to help me and others. She is my sherpa, my angel. She has been there for me at 2am or at 5pm. She is the one who inspired and actually taught me the tips for treatment blog post tricks-for-treatment.html and vlog.
As I continue to navigate this world of "in between" I think about how stressed I can let myself get. My husband has been sick for weeks, my dad is here with me recovering from his near death experience, I have two kids and a dog and myself to care for while job hunting and recovering from the year that "changed it all". I want to say to you reading that you can have gratitude and still be stretched so thin that you just want to yell.
This is how I feel today. I am so damn lucky that I can do the things I need to do and that, theoretically, I am NED (no evidence of disease). I plan to / hope to stay that way. I had a bad experience with a local gastro doctor who did an endoscopy and diagnosed me with like 4 things that would be massive if I had them (and oh I would have some massive symptoms) and in calling the office in fear, I was told by them and the doctor that everyone gets diagnosed with these things. Also, some biopsies were taken but I am assured from a friend who is an endo nurse that these are quite common.
Having been through the cancer workout, I know I need to keep it out of my body, out of all of my other organs at all cost because if I do not, I wind up incurable and just about given a death sentence. The only type of breast cancer people die from is the kind that spreads. So with every test, with every doctors appointment, I open myself up to fear. So instead, I have to focus and think about the good. Think about the lack of control and let it go where it must. Because I cannot control it, truly.
1/3 of all breast cancer patients wind up metatastic regardless of staging. So someone with stage 1 can be "cured" and then wind up with Stage 4. We need funding and I need to think about how I can help with that.
For now, though, I have to remember when I get stressed, when I get overwhelmed, that I have to think about how badly I wanted this "normalcy" back and how much things can change in an instant. God willing, we all stay / get healthy, I find a job to keep busier and life continues to move. I do not want to forget my lessons - I am not in control but I know how to put my fears someplace else. To let them sit someplace else. It is quite "nice" to be able to get overwhelmed and not have it be about death, if you know what I mean?
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