I’m sick of learning and writing about this monstrous disease.
IMPORTANT NOTE BEFORE WE BEGIN: I am NOT a doctor nor do I pretend to be. All information and opinions are mine and mine alone. Talk to your doc, a REAL doc, to discuss your needs.
Since my diagnosis in 2015, I’ve been trying like hell to run as far away from the beast of breast cancer as fast as I can.
I haven’t gotten very far.
As of this writing, I am in the throes of post-breast cancer hormone-blocker hell.
Can I get an AMEN?
Those of you who have been diagnosed or have walked this path with a family member or friend, know what a hellish, burned to the ground, wasteland I’ve journeyed through.
Your breast cancer passport gets stamped at these ports of entry:
~ Treatment Options (best route may be unclear)
~ The Pit of Treatment
~ The Ladder Out of Treatment
~ Post-Treatment Euphorilandia
~ The Creeping Land Of Wonder-ing Why
~ Pit-Stop of Muddy Clarity
~ End of Treatment Row…maybe…meh…maybe not
To date, I have reached the Pit-Stop of Muddy Clarity.
Oh, my babies, when I started this journey, I had no idea that the majority of my health care providers had no solid answers, no perfected roadmaps, no simple answers for my simple questions.
What I was offered was lots of best-guess information (by no fault of their own – the info I desperately wanted and needed to make sound judgements for my health simply weren’t there).
When one has cancer, one wants answers. You most likely won’t get them.
Biggest lesson I have learned: You’ll be responsible for finding the research that applies to your specific case and even then, you might get it wrong.
My breast cancer remedies thus far have included a core biopsy, 6-rounds of chemotherapy, 20 days of radiation, surgery, one year of an IV-infused biologic drug post surgery, and lastly, hormone-blockers, initially prescribed for 5-years, but as of the latest research will be prolonged for 5 more years, for a total of 10 long hellish years.
Ain’t gonna do it.
I have been through enough.
IMPORTANT NOTE #1: Before anyone wants to convince me otherwise, unless you have actual studies to back-up your opinions, please don’t.
Otherwise, I’m all eyes and ears. I’m basing all of my decisions on actual studies and not just what the health community supports or recommends. My decisions are based on science, mixed with my needs and desires for a life well lived.
IMPORTANT NOTE #2: This is in no way disparaging my team or those who have treated me. This is about what I am comfortable with in my life moving forward.
When I first heard that I had breast cancer, I had no idea how much I was going to learn, or more specifically, how much I would need to learn in order to be my best advocate.
I naively thought the medical community had treatment figured out. What I learned almost immediately was that treatment was ever-evolving and nuanced – meaning most of what I saw was a game of Pin The Tail on The Donkey, with my doc blindfolded and hoping like hell she’d hit her target (my cancer).
It was terrifying.
At that point, I read all I could. I talked to as many folks who would listen. I conferred with many and trusted that the course of treatment for my cancer was the best road to travel.
Treatment Options: Stamp that passport, baby.
Next stop: The Pit of Treatment.
It was barbaric and brutal.
Or, as the title to this post reads: Color Me Annoyed: Most Breast Cancer Remedies Can SUCK IT!
As I continued to travel the road of any breast cancer patient, I was stunned to learn the gold standard treatment offered (nice, how they dress it up), would resemble a Wild Western bar fight, where anything goes. It was if I fell down an alternate reality hole, into a turn of the century torture chamber.
Dear God in heaven. It was 2015 and THIS was the best we had to fight?
It was an awakening.
Fast forward through every horrible treatment beatdown – I had arrived at Post-Treatment Euphorilandia. I made it! Whoop!
That wonderful moment was short lived – I was told I had a year of infusions ahead of me. There was a wonder drug, a biologic, that was going to make my post-treatment life a dream, was going to extend my life, was going to be the end all be all.
Give it too me! What’s one more year?
To be absolutely clear: I was THRILLED that modern medicine, the same machine that had tortured me through treatment, was now offering me a golden ticket to a longer life. More days ahead meant more Garry and Boy and Girl and sweet Sweet E.
Hook me up.
A month or so after I began my year’s journey with my biologic drug, I was informed I needed to take a hormone-blocking drug for 5-years.
I was given the type of drug, an aromatase inhibitor (AI), and quickly began my research.
Holy smokes. The long and scary side-effects list, the stats of women refusing to complete this treatment because the side-effects were intolerable, the idea I needed it for 5-years (now recommended for 10), honestly, pissed me off.
Again: THIS was the best modern medicine can do?
Was my doc serious?
Five-years on a drug that would essentially dump all of my remaining estrogen from my body. Estrogen that I needed post-menopausally for bone and muscle strength, for heart health, for clear cognition (in my job…I needy my cognitionz), and for keeping my cholesterol in check.
My tumor was estrogen-driven, which means it used estrogen as fuel to grow and reproduce. The idea behind aromatase inhibitors is to ditch all available estrogen in the hopes you don’t have a recurrence.
I did my research and read about women’s suffering on these drugs, so much so the majority of women DO NOT finish the prescribed 5-years.
I read about the high probability of side-effects. I also read that it could cut my rate of recurrence in half, over my lifetime.
I also read that some women on the drug relapse, because some cancer cells mutate and start making their own estrogen, so it’s important to understand that AIs are not a cure, they are a treatment.
Given that my cancer was aggressive, and I wanted to give myself the best odds, I decided to try the drug.
Within three months, I arrived in The Creeping Land Of Wonder-ing Why. Passport stamped.
I started asking questions.
~ Is this the best medicine can do?
~ What are my drug alternatives?
~ Is there a natural remedy?
~ Why are women being dismissed by being told that their symptoms are age-related and not drug-related?
~ Why aren’t researchers taking those of us one the drug seriously when we speak up about the nasty side-effects? (this question was mostly rhetorical on my part)
~ Why would any doctor expect women to finish a five-year course of a drug that basically makes them choose between the trade-off of cancer or heart disease. Of cancer or a broken hip. Of cancer or the equivalent of chemo brain?
THIS IS THE BEST WE CAN DO?!
My doc advised to try and stay on drug for at least two years. Most women stop sometime after that and she understood. She advised that sometimes the side-effects diminish after the three-six month mark.
I stuck with it.
During those months I did see my symptoms diminish. Huzzah!
It wasn’t until I hit month 16 that I realized I would never last another 3.5 years on a drug that was robbing me of my sleep, that was causing me heart palpitations, that was making me forgetful and annoyed at your breathing (yes, yours), that was causing me to feel tired and weak throughout my runs.
The drug that was supposed to extend my life was now robbing me of quality of life.
I had had enough. It was no was to live.
I started going through my old treatment notes (I was a copious detailed note-taker during appointments) and looking at the stats for recurrence of my particular cancer.
I read the latest research studies, which by the way is mostly funded by drug companies – the very drug companies that make the drugs being prescribed.
I vacillated on my daily decisions.
I took my time, I read more, I talked more, I took more notes, I pondered and cried.
I cried like I cried in the beginning of my journey out of frustration and anger that it was up to me to make a decision that would effect the rest of my life and I didn’t know what the hell I was doing, except trying to do the best I could for my health going forward.
I asked people that I trusted, who had no skin in my game, to check my conclusions.
Then, one day, one tumultuous stormy day, I arrived at the Pit-Stop of Muddy Clarity. Stamp that passport.
My decision was to come off the AI after 16 months. To live my life, knowing there are no guarantees.
IMPORTANT NOTE TO REMEMBER: I am NOT a doctor nor do I pretend to be. All information and opinions are mine and mine alone. Talk to your doc, a REAL doc, to discuss your needs.
I discussed my plan with my doc, prior to making this decision and here’s my course of action:
~ While still on hormone-blocker, have labs drawn to check hormone levels. (done)
~ Get off drug for three months. (in process)
~ Consume three tablespoons of flax daily (per this study, it acts as a natural aromatase inhibitor). (in process)
~ Keep journal of symptoms. (in process)
~ At the end of three months, redo labs to check hormone levels.
My doc is not entirely thrilled that I’m off the drug. She would like to see me go at least two years on it, then come off, yet, she is fully supportive of this plan of action.
She has advised that “a break” from the drug for this amount of time (for me) will not be detrimental. I believe her hope is that I get back on it after the three months.
My hope is that my hormone levels are within what the drug offered and enter: End of Treatment Row.
I’m two years post my initial diagnosis and treatment hasn’t changed much.
2017 and breast cancer remedies are still brutal.
~ Chemo poisons in hope of curing.
~ Radiation burns in hope of eradicating.
~ Surgery disfigures, then refigures, but not without significant suffering.
~ Hormone-blocker drugs may offer protection from cancer, yet opens the door to heart disease, bone loss, fractures, and cognitive issues, among many others.
I remain hopeful for a cure. I remain hopeful treatment saved my life. I remain stunned that this brutality is the best we can offer.
Cancer ain’t for the weak, my babies.
God bless the researchers. May they end this madness in our lifetimes.
I hate being annoyed, but the truth still remains: most breast cancer remedies can SUCK IT!
I would love to hear your thoughts and insights. Please share in the comments.
* Disclaimer: All information in this series is based on my personal experience and is not intended to take the place of your doctor’s advice.