I spent a lot of time in my life needing to be rewarded and/or doing things for the purpose of benefiting ME or my family. Not very humble, I know.
This year, I have been able to experience a complete change in my drive and emotions. I went from wanting to be, "Hi, I am Lisa and I am the person to rock this / that etc..." to "Hi, I am Lisa- how can I help others?" From my trip to Italy and feeling that I need to help others and be able to move someplace where I can afford to be focused on others and not on my bottom line (check out my house, it is for sale, want to buy it?) to my trip to Tennessee with Compassion That Compel's Repurpose Conference and seeing again first hand how much people need survivorship help for the life after cancer.
Before my trip to Europe, I was stuck on just one free online course and trying like heck to figure out a way to monetize my nonprofit and to be able to make it into a career. What I learned instead and was inspired to do is to live a life of service and to make the offerings free, to focus instead on giving and giving instead of a strategy for taking - for me, personally. I was able to launch 5 more classes and an online writer's workshop - ALL FOR FREE and not the kind of free that is 30 minutes of "fluff" and 20 minutes of a pitch to get you to spend money on the REAL class but actual REAL CLASSES with REAL LESSONS and ALL FOR FREE.
With over 15 years' experience creating curriculum and teaching online and in person the offerings available here are lesson based education with easy bite-sized courses with actionable next steps to implement these new learnings in your life immediately. Check out the services and learning programs offered below and check out the press release here.
The nonprofit website is balanceaftercancer.org; online learning program can also be reached at bacfonlinelearning.org.
I have been very remiss in updating about my clinical trial experience taking Ibrance the stage 4 breast cancer drug despite being an “early stager” (Stage 3A with old staging, 2B with “new” standards of staging – no I was not restaged but I did research it and like to bring up the differences of the staging guidelines in the timeframe of a year and change from my initial dx).
At this point, I am almost done with the trial – which is just mind boggling to me. So, as we know from my experiences on my pilgrimage, I believe I am cured by Saint Padre Pio who continues to advocate and heal people. While on my pilgrimage many things became clear to me, including the decision to continue with the trial despite I guess having some say, “Why not drop all the drugs and just live” but I will continue with my hormone suppressor and my clinical trial anyway because it cannot hurt and the trial is almost over...
I am currently in month 21 and almost 1/3 of the way done with this month. There are just 24 months in total. Despite the side effects being multiple pages long, I have been quite lucky and have tolerated the drug at full dose all of these months. I just want to keep knocking on wood and saying thank God.
If I run fever, I need to go to hospital. I have taken 2 trips over these last 21 months for full complete bloodwork, chest xrays and the works just to be sure the fever was not caused by an underlying infection that my body could not fight due to the suppressed immune system that is part and parcel with an inhibitor pill like Ibrance. I am actively thanking God right now that I was able to go to Europe and continue to live without having to go to the hospital – I hope this streak can continue til the trial ends (prayers welcomed to help me do that!).
I also have found that I am tired but I do not truly know if this is from the meds or just my normal tiredness as I think I was born tired. Through the trial, I have had multiple follow ups – much more than the normal “life after cancer” routine. I have had appointments in the beginning of the process every 2 weeks – blood work one visit, oncologist appointment the next 2 week session with pills being given to me for the month only.
By month 3, this changed to once every 3 months with bloodwork and oncology visit combined. In addition to these appointments, I also needed to do my 3 month Lupron shots (until I removed my ovaries in November 2018) and of course that appointment never lined up with the clinical appointments so it meant 2 visits every 3 months AND surgical follow up every 6 months (which I just graduated from this past December; though I still have my yearly mammo and ultrasound on the remaining breast each December).
So my post cancer treatment phase has still been full of appointments, checks and that connection to the hospital and staff. There was no abrupt break up so to speak. For some, this might be a terrible thing but I felt it helped me cope and continue to move forward before I had confirmation that I was cured to believe that I was anyway.
The decision to sign up for a clinical trial is not easy; there are risks for everything we do in terms of health and wellness even before we become cancer patients. Just taking a Tylenol comes with tons of warnings and side effects that my surgeon pointed out to me that if we read the warnings, we would not even take that for a headache. Were you offered a trial? Did you decide to take part?
Since my Ibrance trial, I have also taken part in the Fit2Thrive study which measured and encouraged physical activity for cancer survivors, a study on intimate relationships and fertility post cancer (obviously, the fertility was not a requirement for me as I was lucky enough to have children before hormone positive cancer) and also a recently acquired hereditary study where I will be rescreened for genetic components for cancer despite already having done a screening in 2016; so many things change that it is important that I get another chance to have this screening done.
So did you take a trial or sign up for a study? Why or why not?
Photos from Sophie Mayanne and Behind the Scars - shared via Elle Magazine:
I blogged every day of October last year and this year although I felt I did not do much I did get featured in Elle (thanks Sophie Mayanne and Behind the Scars) and did cut the ribbon at the Making Strides Walk for my city and you know just kept trucking through what was a time of disquiet in my soul and heart...
Now here we are in November - pinktober is over but hopefully some of the lessons remain like how metastatic breast cancer kills 114 people per day but only gets 7% of the money raised for all things “pink” oh and also that breast cancer is not pink or sexy or fun - it, like all cancers and diseases, is a thief, a curse and a constant thorn in the side of all who have ever been told, “you have cancer.”
But on to gratitude- this is the month of my cancerversary - I was diagnosed in November 2016... it feels like it was 2006 though to me - it feels like sooo much has happened in these (almost) 2 years.
I will NEVER thank cancer for anything but I will begin my journey of gratitude today this November 1st on a very important thing — HEALTH.
I am grateful for my health. Now, what did I just say? Health? Me? Someone who probably could not get life insurance if I tried? I’m happy for health?
Well, let me tell you right now my big secret of how I keep smiling every day - I CLAIM my health in my faith, in my heart, in my life, in every aspect of my life I am healthy, I am cured and I believe that until the day that God forbid I am told otherwise.
Despite stage 3 breast cancer and all of its treatments and side effects including a radical right mastectomy, lymph node extraction, 8 rounds of chemo (during which I worked full time and was a mom - kind of - I lost the job but kept the kids so yeah!) and 33 rounds of radiation. From going bald and feeling so ashamed and not wanting anyone to know I was sick to having a blog (or 3) with more than 2000-3000 readers per week and serialization in Cancer Health Magazine website and other sites and news outlets oh and being in Elle with my naked chest out for the world to see - me who wouldn’t wear a bathing suit once I became a mom is now just like hello would you like to see the space where my right tit used to be - sure!!
And of course I also have continued therapies for hormone positive cancer - I went into medically induced menopause in February 2017 at 40 years old - my mom kept her cycle until like 58 so that is 18 years earlier than I should have stopped my cycles and damn does my body know it - so daily anastrazole pills, every 3 month lupron shot and now in a few days a prophylactic removal of ovaries, fallopian tubes (hopefully laproscopic) and a d&c to test the lining of my uterus and other parts, just to be safe.
My 8 year old asked me this morning, “Are you doing this procedure so the cancer does not come back.” I have some freaky smart children but I also balance the fact that they need to have some black and white in their life and not just shades of grey so I believe in my heart and soul that I am healthy. I do a lot - for the kids the house my husband me and my family and the 2 businesses I am running with some clients and everything and just trying to also spend time on me my friends and my creative pursuits.
I claim it, I believe it and I am grateful for it - so damn grateful because it could always be worse. So as I sit here smiling and laughing one thing I’m not doing is complaining - I don’t ask “why me?” I ask “why not me” - cancer does not discriminate and it does not care about risk factors and for the 1/3 of us breast cancer patients that become metastatic and for the many diagnosed stage 4 de novo I hope everyone tries to do more in any way they can... me, I’m sharing my story and hoping for awareness campaigns to become cure campaigns instead.
Who’s with me? What do we do next?
We only have so much time and yet...
The little things still chafe. The stresses, the worries, the thoughts of not enjoying the moment because the moment is just too much.
I balance so many things on my one boob - a budget that never meets up where it should, a family that just keeps moving one way when I want them to go the other … a new school year pressing down on us when I did not get enough of summer yet. I did not get enough.
I see people constantly getting bad news. News that their cancer is back or that it is incurable. People who are dying left and right. And it is almost October - the month of pink when everyone says, "Breast cancer..." but no one quite gets it.
I live in this time of in between - this world of I do not know - someone who once could only live in the world of certainties and knowledge, I now live in the world of what I do not know can't hurt me... yet.
And yet …
I am NED (as far as I know). That means that there is no evidence of disease in my body - I was given those words back in December 2016 after my mastectomy and lymph node extraction, despite having 5 / 25 lymph nodes test positive for cancer - I had a pet scan a few days before my mastectomy so I guess that was how they knew to say NED. I did chemo scared to death til a nurse told me kindly, "this is just being done as an extra - all of your cancer is gone."
No one really knows, though. Every time I open up my Facebook or my Instagram, there is more bad news. More friends and acquaintances and people I do not even know but feel I do through the blue screen, the small squares, getting bad news, facing death, kissing their kids and not knowing if it is the last time or now. And I am crying. Crying for them - for their children, for their unborn children, for their friends and families. And I know I cannot spiral - I cannot go down the road of "what if" or "how will it happen" I can only live in the moment. The moment of suspended time where as far as I know I am ok - but the what if is still there - I run from it but it follows me like a bad stalker.
The story of Rachel Bland, I can share - she is someone who shared her story even in the moments before her death at 40 years old, leaving behind a 3 year old son and family and friends. She is - was - a journalist and was part of a podcast out of the BBC that two of my insta "friends" are on (I put friends in quotes because although I feel I know them and maybe they know me, it is in the world of square boxes not in real life...) She was diagnosed with breast cancer that had spread to the nodes and in April 2018 was told it had returned in the opposite side of her body and chest... yesterday, she died. In 5 months she went from recurrence to incurable to death.
That is just the story I feel comfortable sharing because she was so vocal about cancer and what was happening to her body and what ultimately took her from this earth.
As a mom, it hurts me so much to think about the what ifs. But not just as a mom - as a person. All that I want to do - all that I am doing, the people who count on me, who love me , who hate me, who tolerate me, who can't stand me - every thing in relation to me in the orbit of this "post"-cancer apocalypse.
I try to keep in mind that life changes on a dime for everyone but sometimes as I straddle the worlds between "health" and "sick", I see it is not the same for all. Despite all of my fears, anxieties and worries before diagnosis, I never really thought of the "what if I am not here anymore..." It was not until Cancer that mortality hit me in the arse - hard.
So I let it out, I write it down and I try to get back to living. I have spent the last days of summer away on vacation, enjoying life AND working- it seems being busy is the best way to suppress the negatives. Now, as I face getting kids back to school tomorrow, back to routine, I just have to stay in the world of "TODAY" and not "what if".
How do you handle the world of what if? What do you do to help yourself not go down the road of negativity? Today, I will cry, just now, before the kids wake up and need my attention, before my conference calls are scheduled, as I work on various projects, I will weep. It might help... Does it help?
This is "life after cancer" … XOXO Supermom
Super Mom BC Eradicator - connect with me via the icons above :). Thanks! XOXO LISA (my secret identity ... )