Awakening from the Edge

Awakening from the Edge

My mind pinballs while new insights flood in as I count off the days till I start chemotherapy in an attempt to save my life after being diagnosed with triple-negative breast cancer – all massively complicated by 37 years of CRPS.

Since my last sharing, I’ve been wading through the good, the bad and the ugly. But, much to my surprise, the most vibrant feeling that emerges from this health scourge is my steadfast desire to live, to embrace the world I’ve created since my “death” at age 21.

Cynthia Toussaint

Before this epiphany though, I’ve had to stare down a ton of scary.

My PET scan was a nightmare as the contrast dye inflamed my breast and lymph node tumors – and I screamed bloody murder for twelve hours in John’s arms. Tomorrow I’ll undergo an MRI with another dye. No way out and no one knows the outcome. Next week, I’ll have a port implanted which is another hurdle, another chance to reignite “The Suicide Disease.”

For best chance of survival, my doctors want to blast me with chemo, surgery and radiation. But in the words of my CRPS doctor, “any of these treatments could very well destroy your life.” These are my choices.

I’ve come to the hard reality that my cancer is another chronic illness, my lucky number 13 co-morbidity (the first one of the malignant variety.) Let’s face it, if I survive this round, from here on in my life will be all about trying to prevent a recurrence of this most aggressive breast cancer.

Then there’s the mental game. In my thoughts, time has become disturbingly finite. I just got the new iPhone. Will it be the last smartphone I get? As the election season heats up, I wonder if I’ll live to curse the next President. Will I enjoy another Thanksgiving feast? Over the summer I canceled a trip to Iceland to work back east. Did I screw up?

Despite this avalanche of scary, goodness is happening – and I’m holding onto the beauty that is within reach.

A dancer friend in my awesome pilates community led the charge by surprising me with a shaved head in solidarity. After this Greek god’s golden curls were left on a barber’s floor, I was dumbstruck for words of appreciation and love. Others will be donning “The Cynthia Cut” soon.

My Anthropologie personal shopper, a fellow woman in pain, will meet me this holiday weekend to pick out scarves and beanies. And girlfriends are looking into finding me a pretty wig (eh, probably not my style.) My lady friends at the Coco Chanel counter have given me eyebrow drawing tips and cuticle oil for my nails as they’ll likely ridge far more severely than they have from CRPS.

People check in everyday with calls and texts, and each card in the post makes my heart sing. A few strong souls from my past have re-entered to aid in my fight. John’s making lists of who will help with what, including lending ears when we need to vent, ANYTHING, ANYTIME. And they mean it.

John and I have hugely amp’ed our cuddle time which is the best kind of pre-chemo medicine. We retire to bed early these evenings with our rescue kitties, light some candles and he touches my tumor as we send it love. I long ago learned to embrace every part of me as good.

These gifts are rays of light for this woman in pain in her darkest hour. Yep, I’m staring down death, that thing I’d yearned for since forever to deliver me from my misery. Now I find myself stunned with a new awakening.

I’m having dreams about my past that are filled, not just with heart break, but also beauty and gratitude. I’m coming to treasure life again since seemingly losing everything decades ago. Pre-CRPS, the world was at my fingertips, and after it all slipped away, my life has been a steady drip of hardship. But I now see that working through my suffering, making something out of nothing to help others avoid my fate, has given my life great value. The gift of my cancer is realizing I have a life worth living.

Love, not hate. Appreciation, not sorrow. More than ever, I gravitate to comfort those in pain. Today at the pool, a woman in pain was hurt verbally by an aggressive swimmer. She broke down in tears, and I sped through two lanes to get my arms around her with kind words. Any hesitation I might have had to help before no longer exists. There’s an urgency now.

I learned goodness from my mother. She isn’t herself these days as she tussles with advanced dementia. Somehow, someway, Mom’s been calling, asking with her familiar concern how the chemo’s going. I gently remind her that I’ll be starting soon. I think, “Isn’t it a miracle that her loving maternal extinct shines through her topsy-turvy mind?” My mother still leads with her heart.

I want to be like Mom. Though darkness is closing in, I want my heart to be above it all. We women in pain can easily forget life’s goodnesses as we’re understandably wrapped in our suffering. But it shouldn’t take cancer to find our rainbows of gratitude.

People often share that my work and determination helped them survive. They tell me not to give up, that my voice has power and resonance, and decision makers are listening. I’m needed, and must forge on with my mission.

Standing at cancer’s welcome mat, I now see that I’ve created beauty in what life has dealt.

Women in pain, during this season of gratitude, let’s rise. Each of us must do what we cannot do every moment of every day. We’re on the hero’s journey and there’s nothing tougher, nothing more elevating. Live a life of service, to others and yourself. Love deeply. Then I promise, no matter what stands in your way, even cancer, you’ll fight on.

Featured image: ID 162034191 © Maria Marganingsih | Dreamstime.com

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Cynthia Toussaint founded For Grace in 2002. It is a Los Angeles-based non-profit organization dedicated to bringing awareness to gender disparity in the treatment of pain. She is also a frequent contributor to the National Pain Report.

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JaneF

I too, suffer with CRPS. I also have endured cancer and treatment, prior to the CRPS. I also have a mother with dementia. I understand….and I KNOW my faith in God, the LOVE of my family and friends; life seen in the smallest of circumstances, such as watching and listening to the birds singing, the beauty of the flowers, grasses, trees, drifting clouds, all of the wonderful things that remind us of God’s beautiful world, will inspire you. May your soul be continually renewed with the life you have and the blessings you still count. I will remember to continue to pray for you. May God Bless You and Strengthen You in Your Journey. Love to you and your faithful love, John.

Maureen M.

Dearest Cynthia, I have made many replies to your posts over the years and think the world of you, your immense strength, your inspirational teachings etc etc! You are a super woman for sure, in spite of all that you suffer. Thank you.
You have always been very blessed with caring support of others and I know that you will be well carried through this new, uninvited and unexpected journey also. You already are 🙂
You are loved. Hold on tight to that love and breathe.
You have had so much burden and I am forever sorry for this cancer to have come your way on top of all else. I know that whatever your outcome…you will survive this too.
You will be in my/our prayers along your way and I’m sure all will be awaiting your next post when you will be feeling up to it.
Let go of your community responsibilities and focus only on yourself and healing your way through this. This fight won’t be easy but you are incredible and will get through it.
God bless you dear one, and John for upholding you through so much.
With love, light, peace and many warm hugs, Maureen M.

Gail Honadle

RED LAWHERN For Members and Associates of the Alliance:

Reminder: The Board of Science Counselors of the National Centers for Injury Prevention and Control in CDC will be meeting December 4-5 in Atlanta. Several patient advocates in ATIP social media and email networks are signed up to speak in the limited time put aside for public comment (45 minutes total, 2 minutes per speaker). We will need to listen to the comments starting 3:05 to 4:05 PM tomorrow, and continuing 10:40 to 10:55 Thursday.

If you are scheduled to speak, here is an outline of points we might make. Please don’t duplicate the points. Listen for earlier speakers who work from this list, and then continue from the list. In two minutes, you can speak about 250 words at an understandable pace.

I have filed a referenced paper with the conference administrators to be attached to meeting minutes.

• Guidelines were not only “misapplied” but factually in error on multiple issues [1]

o Sweeping conclusions were drawn from very weak data or unsupported opinion. [2].

o Rarity of long term trials was falsely conflated to insinuate that opioids are ineffective in the long term. [3]

o Well known genetic factors in opioid metabolism were ignored; these factors invalidate generalization of dose thresholds in effectiveness or risk. [4] [5]

o Real risk of addiction or mortality from prescription opioids was grossly over-magnified and hyped.

o Patient addiction from medical exposure is in fact rare. [6]

• Over prescribing of opioid pain relievers by physicians to their patients did not create America’s public health crisis — and data published by CDC prove it beyond contradiction [7]

o Seniors over age 62 are prescribed opioids for pain six times more often than youth under age 19.

o Youth have overdose mortality six times higher than seniors.

o Overdose mortality among seniors has been relatively stable for 20 years while skyrocketing in youth.

o Prescribing can

Kathleen Justison

Dearest Cynthia, we don’t know each other but in some ways we do. Sisters in chronic pain have our instincts about each other, don’t we?! I’ve been suffering with RSD for 27 yrs.
It’s the season of of love, joy, hope and mostly MIRACLES! You are an inspiration. Use your inspiration to heal thyself!
Must love positive enery and love go out to you!🙏😍💞

JoAnne

God Bless you as you face these hurdles.
Our stories are similar, but l went through chemo with a very unkind (ex)husband.
If you will be getting Neulasta injections after treatment, please remind your Oncologist that CRPS may require a smaller dose. Neulasta is necessary for strong chemo, but my experience at normal dosing was hellacious.
I purchased an expensive wig & scarves in preparation for losing my hair. Little did l know that chemical induced menopause at only 42 would give me a lifetime of hourly hot flashes. I wore the wig once, and even 7 years out l am consistently too warm to consider anything on my head.
My reconstructive surgeon offered me the use of a head cooling machine to minimize hair loss. As a Neonatal ICU RN, l knew these water circulating devices were used to try to minimize brain damage in hypoxic infants. I wore the cooling cap during my chemo & didn’t go completely bald. However, I think it would have worked much better if l cut my hair short prior to starting treatment. Long strands became knotted & there wasn’t perfect contact of the awkward cap & my scalp due to long hair. Perhaps a machine is available for you?
Many prayers for you 🙏

Dave

Thanks for sharing your experiences both inner and outside your body.
A friend of mine was asked a question by a military therapist. If he loved his family why do so many mission’s bringing him close to death. My friend was a bit troubled by this.
He and I deal with PTSD and more. I said some live, love and suffer close to death every day sans tasking in other country’s. Spoke of Queen and Slim the new movie showing how black lives can simply be that way any time.
Same with long term or enough pain. Other countries as he well knows life, death and beauty walk together always.
It’s a normalized quite radical world having room for all lowest this and highest that.
Same time, for me I find my body attachment both strong and light.
Thank You for sharing your view and love from a fairly rare vantage point. The price of admittance to your worldview is emense.

Cynthia, I know how I would normally respond to someone either telling me about their CRPS diagnosis (11 years myself), or cancer (my husband tragically died in 2016, living only 6 weeks post diagnosis as it had already metastasized x 5), however given your new found awakening for purpose in life and wanting to live is certainly inspiring and perhaps (hopefully) may change the perspective for some. However, the key thing I think you thankfully have is the support and love of your husband, admiration and the feeling of being needed by others (still). I am not sure if you were truly one of those of us who genuinely think about suicide;with death being the only thing that will take away this pain. Pain that no one else but another with CRPS can comprehend or empathize with.
Unfortunately, I myself have no real support. I have been estranged from my family for many years now and never do I intend to put myself through having to deal with them along with my CRPS (as well as Fibro, migraines +++++).
A lot of friends that I had fell away when I was no longer working due to my CRPS. I have only one friend ( sister), known since grade 7 who comes to visit me almost every month. The only thing is that she still doesn’t understand my condition; as I am sure most of us have found….Even many doctors do not understand it right?
Living alone without love or support causes my CRPS to get worse. It is now from my hips on down to my toes on both sides. It has also started in my arms the last year or so. Many days I want to stay in bed, the pain is so bad, but I cannot as I have a dog that has needs before mine.
I am glad you sound so invigorated by cancer. Most cannot even fathom reacting that way.
I myself am still on the path to have this condition live up to its informal name once my companion dog leaves this earth in a few more years. That is unless there if a cure or the pain becomes so unbearable that I cannot wait for her.
Good luck Cynthia!!

Wendy Paley

Cynthia, my heart breaks to hear what has happened to you and what you now have in front of you. You are an incredible writer as well as a true philanthropist. You give with your heart and have helped so many people. I have enjoyed reading all of your posts. Life has dealt you a cruel hand, but you have never given up! You are An amazing person and warrior. You will be in my prayers to survive this next battle that life has given you. With love and many hugs. Wendy Paley

Katie Olmstead

Life if finite. That’s everyone’s reality. You, oh powerful woman, and all of us, do well to remember this and live life fully, deeply, with appreciation and in service. This happens to be a favorite quote lately.

I slept and dreamt that life was joy.
I awoke and saw that life was service.
I acted and behold, service was joy. ~Tagore

Cindy too

Breathtaking.

Gail Honadle

I rise with you, I’ve lost both my parents to Lung Cancer found too late to treat. How do you miss Cancer when you are getting X Rays every 3 months at the VA? At least they had Pain Meds back then. Several of my cousin’s have had Breast Cancer, it runs in the male line for them, as 2 of my aunts married 2 brothers who carried the gene. They all get gene tested early.

My Niece is dying slowly of the severe form of Lupus, along with Lymes, Jacksonian tremors, FMS, trashed liver, kidneys and lungs. She is fighting a divorce so the Piece of [edit] she married won’t harm her children. Her 14 yr old has Early onset Duchene MD. And he is his abusive father’s favorite target. Guy is both a drunk and a DOPE addict.

May GOD give you strength. In Christ name, amen.

Rose Montgomery

It’s so hard to know what to say — you are so amazing, the world needs you (How’s THAT for more responsibility!) Sending love and healing thoughts your way.

Kristen

Cynthia,You are so brave and your positivity is an inspiration to so many even during one of you toughest fights.I have been following your Journey from when you announced this news and my heart goes out to you.You are a fighter and your determination to to kick Cancer in the **** .I am a Cancer survior but as they say in remission and when I first heard the C word my life felt like it crumbled.I had a great support system and knew ultimately I had to make the choice to fight through it or not.I choose to fight on top of my other Chronic pain issues. So happy you have such a wonderful support system and John the love of your life is there for you and will help guide you you .Beauty comes from within and no matter what you will always be a beautiful person inside and out.Never give up Cynthia, we are all here for you through the good days and not so good! Sending hugs and Blessings your way!

Donna

I love reading your articles. I pray that you will be writing for a long time to come. Thank you.

Your writing remains eloquent and your courage inspiring! My thoughts and prayers are with you.

Michael Kastner

Cynthia..,, I have followed your glorious writings for a while now and always learn so much from your kind and wise soul.
Of course my heart goes out to you as you face the biggest battle of your life. Your life.
You inspire so many. You teach so many. You love so many. And so deeply
My prayers, along with those if many will be heard by the good Lord above and you will conquer this evil demon that has entered your body
Cynthia, May you find some comfort in the fact that you indeed live your truth, goals and dreams.
You touch the hearts of so many that truly care so much that the energies of all of the outpouring of love will indeed help you survive. Will you be different?? Physically, of course. But in mind and soul the only differences that you will undergo is getting stronger and loving deeper
You are one amazing person Cynthia.
May you come through this challenge with as little pain as possible and continue your journey here on earth spreading joy, love, empathy and education to all who are lucky enough to cross your path
You’ve got this Cynthia!! I’m so sad that it such a difficult road and journey for you. But in my heart of hearts I truly believe your missions in life will continue for a long, long time.
May you be Blessed with Comfort in knowing your strengths will help you through your most difficult days.
And you and John will grow old together. Bless John too.
My best regards, respects and love from my heart to yours
Michael Kastner
California’s Northern Coast
💜😇💗😇❤️😇

Pam

Oh Cynthia! You are such a beautiful soul, and I am filled with gratitude for everything you have done for us women in pain!! I also am filled with deep sadness with all you have gone through and, your treacherous ‘treatments’ ahead!! I will keep you in my thoughts and prayers, as you start on this most difficult journey ahead! Your sheer determination to get through ‘this’ as well as, your very strong will to live! Sending love and light to you! Pam❤️

Beautiful, moving and filled with hope and wisdom. Thank you for sharing and best to you into your treatment.

Judie Plumley

I am in this fight with you. Mine turned out to be adenocarcinoma lung cancer that spread to my eye, node, bones, a muscle in my leg and brain. I have had 2 gamma knife surgeries to kill the cancer in my brain.
Right now, my pain is mostly manageable and all I feel is thankful.
My first symptom of my cancer was losing the vision in my eye. If that had not happened, I would not know I have cancer. If this had happened in 2010, I would be dead in 6 months.
God, as we understand Him, must have something in store for us.
I am so thankful I have decent care and Palliative Care who takes care of my pain now. I am on Ketruda, as immunotherapy is the only thing that will work on my cancer.
My love to you. I am mentally holding your hand.

Judie Plumley