It is Halloween and also the end of Breast Cancer Awareness Month (AKA Pinktober).
It was an off month for me - after a month or two of being "off", I am feeling slightly stronger and ready for whatever tomorrow holds again. I have pulled back a bit from being so focused and instead have begun listening to my body and my heart and doing what I want to do to keep me happy instead of what I am expected to do or what I am "making" myself do. I am still focused on my nonprofit and my small business but I am not consumed with it. I am making myself learn the art of balance and also of putting myself first. A big way to do this is to decide to chuck my ovaries. Trick or Treat is definitely a bit of a trick for me!
I have hormone positive breast cancer. As far as I know, I am NED. It will be my two year cancerversary in November <it feels like 8 or more years ago but it was only almost 2>. I asked Sloan during one of my clinical trial appointments if I should consider getting my ovaries out. (Note: Instead of only seeing my medical team once every 6 months, I am here every 3 months with my oncology office and every 6 months with surgeon so I have not yet felt that off the cliff feeling of no more medical appointments most survivors go through).
As a hormone positive breast cancer patient, I get Lupron shots to keep my ovaries off or asleep. These shots are 12 weeks apart (though there is also a monthly option) and the shot is administered at the hospital. Right before my next shot, I find my body going into PMS with cramps, pimples and just the feeling that my period is going to hit again any minute. And let's not talk about the after effects of the shot always in my right butt cheek to keep the pain on the same side so I can sleep on my left - I laugh and suck it up but damn that shot packs quite a punch and some weeks of don't touch my butt pain.
When I had first looked into removing my ovaries, my decision was to wait until the clinical trial (of Ibrance or the Pallas trial) was over (I am on cycle 16 of 24 cycles) but then I went to my yearly for my local gynecologist and got an ultrasound.
This was great but also amazingly scary - I stopped to think about how this was a great idea to know what is inside but also then I stopped and asked him, "Are you doing this because you think something is wrong or just as a precaution." He assured me it was something he does for all of the women in menopause to check their organs. I should have had a monthly cycle until I was about 58 (going by my mom) and instead my cycle was stopped at 40 years old. The body wants to go back to "normal" yet my normal could kill me. (Note: This does not mean that removing my ovaries takes away the cancer recurrence / spread risk that all cancer patients deal with - some folks have one type of cancer like hormone positive and then it comes back as a different type of cancer like maybe Her2 or triple negative etc.)
I am so blessed that I have my children and that preserving my fertility is not something I need to do. Did I want to someday maybe have a third child? In theory maybe but not in reality. I have my hands full as it stands and when my hormone therapy ends in let's say 10 years (as recent research shows more time on hormone meds is better than less), I will be (God willing) 49 and my kids will be 16 and 19 (God willing) - would I add to my family at that point? Not unless I lost my mind because come on, I would be a mom of high school and college aged kids - am I crazy?
During the ultrasound, 2 sebaceous cysts were found - one on each ovary - and I was assured they are fine, normal and nothing to worry about but my mind remembered my mammogram and ultrasound from April 2016 when slight calcification in my milk duct was found and my 3 specialists I met with all told me it was benign with a 98% chance of remaining benign and I realized that waiting to remove my ovaries might not be what I should do.
So yeah, I decided to chuck more body parts. I did not make the decision lightly but once I decided to move forward, it all fell into place. Today, instead of volunteering at my kids' school for Halloween, I am at Sloan for my pre-op testing and meeting with the surgeon. Tuesday, November 6 is the day - not just election day, also the day I will remove my ovaries.
Sometimes I wonder if I am making the right choice but then I recognize that my ovaries have been rendered obsolete already and keeping them is a risk I do not want to take. For many years, I have had bloating, stomach upset and other common symptoms of ovarian cancer (which is dubbed a silent killer because there is no common test for it or testing regiment and the symptoms can be considered regular PMS type symptoms) and I recognize I do not want to hazard any controllable risks in my life.
For me, getting the ovaries out is the best choice - but like all choices it has risks and though I am thrilled I made the decision to be as proactive as possible, I still ask for prayers and support as I go forward with this. I will learn more today about the recovery but from my Google search, it seems I will be unable to drive for a few weeks - which means, for a mom of two kids with crazy schedules, a VACATION - no?
Here's to medical options and decision makings - may your Halloween be sweet & fun! XOXO Li
40 mph winds and 45 degree temperatures - I warned my team not to come as it was so cold but they all came and more! I am so lucky and blessed to have all these people in my life!
I was part of the committee for the event, my team raised enough money to be in the top 5 (and I didn’t even get the donation from the restaurant that hosted our big night yet - more on that soon) and I got to cut the ribbon to begin the walk!
I have been hard on myself this October - thinking I did not do enough, I did not write enough and all that but looking at this and some other things I will be sharing soon I do not think I did half bad.
Breast Cancer, and cancer in general, sucks and sometimes I do feel that loneliness but not during this walk I was warm and loved and I love in return :). This is life after cancer diagnosis.
I have to say I am so very lucky. And surprised oftentimes of how things work out for the best, without planning it to do so.
I was struggling earlier this month and late September, too. I dreaded October without realizing it - this month, this big month where everything everywhere is about breast cancer (but only ONE DAY about the kind that kills - metastatic breast cancer - smdh)… I had a lot of balls to juggle this month and the recognition that, again, I am not who I was in terms of being able to run, run, run all day long and not take care of me.
But it is so easy to slip into that, without thinking. That need to be all doing, all controlling - the spaces taken up by those who would / could help long gone as "You are ok now." Even though, now, I am not quite ok - do not think I ever will be able to do what I used to do without ceasing, without caring, without thinking of myself and yet, it is what I have been doing to get by each day of increasingly frenetic activity or running to games, to practice, to appointments - from one "crisis" per child to another <nothing hideous, but trying nonetheless>.
And the back of my mind thinking, "I need to write. I need to advocate. I need to use this platform to share my story, to help others, to do more..." but also knowing that I was kind of burnt out for a few weeks and attempting to regain my equilibrium is not as easy as it once was.
In my house, there is one person who does it all - like you other mama/sister/daughter reading this, it is me. I am in charge of keeping the house clean (despite its and the fellow residents' absolute refusal to help/keep it clean), the cooking, the shopping, the kids (just in general from reminding its shower time to helping with homework to planning weekends and doctors and such not) and also hubby who (God bless him) cannot plan for anything anytime - and when I sit him down to go over the week or the weekend's plans, or ask him to help or what have you, he asks for a list as though I have a list - it is just everything and do what you can.
And of course there is my budget - my woefully, depressing, anemic budget - and the bills that need to be paid and my happiness in having some clients but knowing it is not enough - yet - and that I do not see how I can take more on because now, right now, is when I have drawn the line in the sand.
I stopped taking care of me sometime around 3 months ago - maybe more. I became stretched WAY too thin and forgetting how I need to try to take care of me, to respect my body more, to give myself time to rest -but how? Every day is something else - every week is slammed with appointments, events, things to do and weekends are even worse.
I am still trying to work this out but I know it will involve getting more rest, planning less, and just letting some chips fall where they may. I cannot control it all - I can barely control my body to get myself to sleep well or to have these moments where I remember I am human and not superhuman - that I need to get these kids to have chores and to actually do them, that if my husband needs a list, I need to get him that list, that I need to remember that rest is never a bad thing and I can never get enough of it. And the bills, the budget - f@ck it. It means nothing compared to health and wellness. Sometimes, I forget - even I the posterchild to what is something really bad that can happen if you let stress and running like a lunatic be your life...
Nameste, Life - time to play it on my terms. Who's in? And who can help me figure it out?
It has been almost a month since my last post, writing, anything and I guess it is because I have not felt too "super" lately...
Well, that is not exactly true - I have still had some great times - but I did not want to document them for social media or share them - they were times with my kids and stuff and friends and family... but even with the good, I did have a week or two where I felt off, down, sad, etc then I realized it was time for my Lupron shot and recognized the beginnings of a harsh PMS on its way - can you imagine if your period was stopped in February 2017 and tried to come back like yesterday how you would feel? The emotions flooded me but I got the shot in the butt just in time yesterday to stop those damn ovaries from coming back to life.
Not before the zit started to grow on my cheek, though - damn you hormones!
I have been pretty apathetic about social media, though - maybe because it is "pinktober" and there is so much being shared - last year, I was the one sharing - I did a blog post a day for all 31 days of October. This year, I have been struggling with writer's block or apathy or something for the last few weeks tied into the hormones yes but also a bigger issue... A question, I guess, about what is next, what do I want to do how/ why and all that.
Why this is, I do not know. Things have been moving and grooving for me - I have had a bunch of speaking engagements, interest in my work (with my nonprofit) and I am reminded sometimes through my own ways that writing it down, getting it out and sharing is so helpful for both my own sanity and for others...but still, I was unable to do it until right now.
Why now? I do not know but I guess now is a good as time as any to say, "I'm back, I'm here..." but I guess because it was recently world mental health day and I can say that all of us need to know we are never alone and that our emotions are a part of our lives and need to be heeded.
I know that beyond hormones for me there was also a general apathy and/or maybe depression - which I can barely type because I have never known myself to be "depressed". I am often just ridiculously "happy" and although I have had anxiety in my life, I never often gave in to melancholy or crying in my past... NOT that there is anything wrong with that - because there is not - it just was not me to dwell or linger on bad stuff.
Now, though, after cancer and its treatments and life in general I know it can bring you down and that you should know you can get help, you can do something to help yourself however small and there should not be a stigma about feeling bad, down, depressed, whatever - even for ME the epitome of "go go go".
I had a therapist appointment recently - <Note:I have gone to therapists since I was in high school - yes, I said high school...- living with drama and divorce and stuff made me recognize early on that having someone to speak to was helpful and I went to my high school "counselor" for sessions and then in college continued the practice and have done so ever since.>
With my recent appointment, it had been a while since my last one and I was going over all of the stuff and my therapist was like, "Let's not put so much time between appointments..." and it is true - I had been neglecting my self and my needs and it led to my suffering maybe more than I needed to with my feelings / stress / etc.
I cannot do that again and I hope you won't either - dealing with a chronic illness like cancer is tough and though I laugh a lot, I definitely have been changed by the events in my life - for better and worse.
I am still trying to juggle it all but differently now - I do not want to do too much with any one thing - I want to make a living and help people but not be CONSUMED by it - I do not want to be "famous" - I want instead to help others quietly not LOUDLY with social media documenting my every move - I want to enjoy my children - it hit me recently that within a decade, I will have two college students - no more babies but grown people who can vote and shit and omg that was a big shocker to me.
What about you? What do you want?
Super Mom BC Eradicator - connect with me via the icons above :). Thanks! XOXO LISA (my secret identity ... )