Living With The Invisible
NYC skyline from Central Park
On my recent travels to Toronto and NY I was struck by the dichotomy of my two realities – On the outside I am just another ordinary, healthy looking mom… But the truth, that is invisible to most, is way more complicated.
Breast cancer has changed me. It influences my decisions. It shapes the details of my days. It is on my mind constantly. It is a nagging voice in my head. A terror that comes alive at random moments. Every little pain is a potentially life threatening complication. A constant reminder to choose wisely and live fully.
And yet, all of this goes largely unnoticed by those on the outside looking in. The battle is invisible.
While it is nice to blend in sometimes (and I am beyond grateful that I am as healthy as I am) it also feels a bit incongruent. The outside me who appears to be totally fine and the inner me who is waging a war against death.
A part of me wants people to know the truth. I want people to see my scars. To understand how different my life is now. To know that I am fighting for my life here. I want my struggle to be acknowledged.
It is so weird going about your day-to-day life with these massive internal battles that are invisible to the world around you.
I often walk the streets and wonder who else is living this way? What internal battles are other people dealing with? Could the barista making my coffee have an abusive husband at home? Is the flight attendant dealing with an auto-immune disorder? Was the girl getting on the school bus raped or molested? Is the garbage man battling depression? Did the clerk at the grocery store just go through a miscarriage?
All of us have internal wounds and battles – invisible on the outside but felt deeply on the inside. Trying to face our fears, fight our battles, and heal our wounds is a lifelong practice.
In my own fight I recognize that the hard work I am doing is paying off. The effort I make every minute of every day to live a healthier life and heal my wounds is helping tremendously.
But I also live every day with the knowledge that the median survival time for metastatic breast cancer patients is 3 years. And I’ve already lived one of those years.
I try not to think about my death. I brush away the statistics and try to focus on living. Focus on the potential. Focus on the flip side of the coin that tells of women living for decades. Focus on the possibility of complete remission – despite the odds. Focus on the miracles in life.
Monday I go for next PET scan. I believe in my heart that the scan will show no evidence of disease. I have to stay in the space of hope.
I have also decided that I am going to stop taking the Herceptin. My last dose was at the end of December. I really want to get off the meds so I can give my body a chance to detox and rebalance itself – naturally. I haven’t told me doctor yet. I’m a little nervous about his reaction. But am going to stick to my guns on this one. Just as I did with refusing to take the Tamoxifen or Arimidex to suppress my estrogen.
Recently people have reached out with many questions about my natural regime. What I eat. What exercises I do. The supplements and vitamins I take. The psychological work I am doing. So in the coming weeks I plan to post more in depth explanations of the work that I am doing physically, psychological, spiritually, and environmentally.
It is a heck of a lot of work to live the way I do. But I do feel great. And everyone keeps telling me I look great too.
For me, there is no other option. I want to live. And I will do everything I possibly can to see that happen. I understand that nothing in life comes easily. You gotta work hard to see results. I am ok with that. And I’m willing to do the work.
One day at a time.
Peace. -T
Exploring Central Park with Miss M
Good times with best friends!
Beautiful post and beautiful pictures. You are marvelous!
Love! I can’t wait to hear about what you are doing! And yes the internal battles we are all dealing with, the baggage that we carry changes us and yet very few actually ever know our stories! Thank you for sharing! xoxoxo
Yup…it IS hard to live with an invisible disease.You tend
to think that others just don’t GET it…how can they UNDERSTAND
what it’s like to go through this…but you’re also right in seeing
that everyone has their cross to bear.Honestly,it’s hard work to
stay in that mindset.It’s much easier to wallow,though one friend
of mine pointed out that when I feel like i’m whining,it’s just a
sign that i’m tired of carrying it by myself and maybe I need a
hug.Your courage inspires me,as always.I wish you the very best
news from the PET scan…I will be keeping you in my
thoughts.
Thanks Vicki. I absolutely love your friend’s words… Next time I’m feeling whiny I’ll ask for some help and a great big hug 🙂 Cheers! -T
Marvelous! Absolutely marvelous! Years ago, I wrote a piece
for an international magazine on a similar theme. The vast number
of disabled people (whether by cancer or anything else) look GREAT.
Nothing at all shows of their difficulties. I was delighted with
your thinking about others because it expands your perceptions of
humans as possibly severely disabled by life events that don’t show
at all, but scare their victims half to death. And they, too, LOOK
FINE, just like you do, Terri. Most of us are in a large crowd of
good people who also have huge difficulties. It IS the human
condition we all share. At the very least, realizing this sharpens
our sense of BELONGING to the human group. And that encourages us
to treasure our lives at every possible moment. It gives us
compassion for others in a positive way. And THAT helps US make it
through. At the least, you look good. You feel good. And you’re
thinking well. It makes a world where you feel you can hug somebody
(anybody) nearby and find the person is, in many ways, just like
you. It’s empowering. You ARE going to make it because you’re
strong, because you are doing everything right and you feel good
because of it. BET ON IT! Lee
Thanks Lee! Would have loved to read the piece you wrote 🙂 It reminds me of one of my old social work clients who came back from an AA meeting with the wise observation, “We are all fucked up!”. We spent the session talking about how true this was and how it is our pains and vulnerabilities that ultimately connect us. Once you realize this, you don’t have to try and be perfect anymore. Because you realize no one is. The grass is always greener… All the best to you & yours. – T
“Your comment is awaiting moderation.” WHAT DOES THAT
MEAN???
PS – No idea why your comment was “awaiting moderation”???? It’s never happened before… Hmmmm….
Thank you for sharing this. It is so true about the
internal damage ….when I was born, I spent the first 3 years of
my life in a hospital due to heart and lung problems. My parents
were told to leave me there, and forget because I wouldn’t be
around long (this was the 1950s). Surprise! I’m still here! But it
also was a “surprise” when one of the problem I thought I had in
control this week came back in full roar…the cardiologist asked
how I could still work and live like this. I’ve learned how to have
faith. I’m looking forward to your future postings because one of
the things I’ve never learned to do is take care of my physical
body like I should (eating, exercise, etc.) because I was always
told that I wouldn’t be here. But this week has been another wake
up call that “Surprise, you’re still here and you need to take care
of yourself better.” Thanks for sharing your story.
Wow! These are the stories I love. People beating the odds. Amazing. I believe our bodies are always speaking to us. The fact that one of the problems you thought you had under control just made a surprise comeback says something. Maybe it’s time for a change. I wish you strength and luck in your own journey and hope you stick around for many years to come!
I’m old enough to have seen many medical theories – and yes, that is what they are – disproved. Remember those high, hard tiny baby shoes? “To protect those little ankles?” That was started by a shoe manufacturer. I remember wondering as a child how native kids in warm climates ever learned to walk, then… You are captain of your own ship. Sail on!
wonderfully said , especially regarding other people
& their struggles ……another reason to practice kindness
always : ) …..we all are facing battles everyday …..yours ,
however, are quite large right now …..& you are handling
them with insight, awareness , grace & dignity
!!….keeping you in my thoughts & prayers, terri luanna
<3
Good luck with your scan on Monday. I’ll look forward to reading some positive news next week.
Keeping you in my thoughts and prayers during the upcoming week — and as always, thanks for the beautiful photos. Much love to you all — John
I love your blog Terri. You are so honest about your
emotions. I understand what you mean when you say that you want
your struggle to be acknowledged. That is empathy in a nutshell. No
one has to go through the same experiences in order to acknowledge
another’s emotions. You have it in spades and it shows when you try
to acknowledge that others may be going through difficult times
although not necessarily the same as your own. Please don’t be
nervous about telling your doctor anything. Your doctor can give
you information and even evidence, but the ultimate decision is
yours. No doctor would take away a patient’s right to autonomy. He/
she is there to support you and is honestly on your side. Think of
that side of your team as a crutch, not as a ball and chain.
Regardless of treatment choices, they will help you cross the
finishing line, not hold you back. Best of luck for the PET scan.
Sarah xx
Thank you Sara. Speaking my truth is part of the new me i’m working on. The old me would be too scared of rocking the boat or hurting other people’s feelings to say and do what I needed to do for me. But the new me can totally understand what you’re saying. So far my medical team does seem to be supporting me (even if they don’t agree with me & my choices). I know ultimately we all want the same thing. You’re so right. Hugs back at ya.