“Category 5 Shit Storm with No Umbrella”

“Category 5 Shit Storm with No Umbrella”

Navigating CRPS and the bleakest breast cancer dx (Triple Negative) is an impossibly riddled nightmare – and since my last post I’ve gone back and forth about treatment almost nonstop. Feels like I’ve got whiplash from the head-spinning indecision of it all.

My original choice to start with chemo which, if effective, is my best chance for survival didn’t stay on the table for long. Not after I thought about the insanity of poisoning my entire body – a body that has endured CRPS and multiple auto-immune comorbidities for nearly forty years. It doesn’t take a genius to know that throwing gasoline on a fire isn’t going to produce anything good.

So I decided to take the “easy” route and just have surgery. But that ain’t no bed of roses either. I’d probably get through the lumpectomy fairly unscathed as breast tissue has few nerve endings, but the lymph nodes and their embedded area are virtual dynamite kegs for CRPS spread. That, and when I asked my USC oncologist if I had a shot at living with just surgery, she paused pregnantly, before responding with a tepid, barely audible, “maybe.”

At that point I decided to go with no treatment. I’ve fought for life forever and it felt like my run was up. I just couldn’t start the CRPS all over again, and death seemed like a better outcome. I thoughtfully amended my will, re-distributed my belongings and planned my memorial service. Hedging my bet, I also made an appointment for a second opinion at UCLA.

That team was brutal. When I said that chemo was off the table, they basically told me I was toast. The surgeon only advised that I have the tumor removed because due to the aggressiveness of my cancer, the mass would likely break through my breast giving me a horribly, gruesome nightmare of a death.

Cynthia Toussaint

These are the choices left to us women in pain.

When I grimly wrote to a girlfriend, Gigi, a women in pain who works at the NIH and has been doing research for me (more bad news!), about my dilemma, she got back with “Girl, you’re in a category 5 shit storm with no umbrella. Of course, you’re a mess.” The only good news about that right-on-the-money assessment was that I knew I had my next post title.

Despite my lousy prognosis, people’s reactions have been for the most part soul steeling. While planning to undergo chemo at the onset, a former nurse friend insisted she come over once a week to take care of me while giving John a respite. She even showed me her best saving-face technique for out of control retching.

It’s not much of an exaggeration to say that I have a pool full of people at my Y who are worried about and rooting for me. The conversation throughout my swims (which carries into the locker room) revolves around the pros and cons of my cancer treatment choices. These fellow mermaids have become a family to me.

My For Grace colleagues are beyond awesome. I have integrative doctors near and far talking to each other and gifting me with their best advice. Jane Goodall, a For Grace Board member who I love and religiously admire, sent a beautiful message, ending with “You of all people do not deserve this. And I will surely send prayers and thoughts of strength and courage.” Every angel I’ve met through Jane is lighting candles for my cure in Europe.

I’m receiving regular calls, texts, cards, gifts and other check-ins from loved ones – and I’ve been invited to rant and rave when needed. I recently received a card from a wonderful friend who’d given a donation to the Catholic church so that Capuchian Friars throughout the world are praying for me. And yesterday a Jewish friend mentioned that last week in synagogue my name was spoken during the High Holy days. If prayer could heal me, baby, I’d be home free.

And, of course, there’s the love of my life, John, a man who would jump into a volcano before seeing me get hurt.

On the other end of the spectrum, my family continues to disappoint and a couple of friends don’t have the right stuff for my new stroll through the kingdom of the sick. I’ve been wisely advised to cut ties or place distance with those who are toxic. Cancer is a resource-depleting disease, and those who bleed energy have no place in my orbit.

I recently got two pieces of advice that ultimately brought me to a landing on how to move forward. One friend, Alexis, suggested that I let the cancer run its course. She told me the tale of a woman with stage 4 cancer who decided not to fight, but instead fulfilled her ultimate dream of swimming with dolphins. The woman miraculously remitted, or so the legend goes. While listening to her words, I had trouble catching my breath as to me, though not intended, this story implied that my life wasn’t worth fighting for. Alexis’ gift was that I was shocked into a stern reminder of how much I love and value myself.

The second came from Bradley, a gem of a man who broke his neck at 19 and has been a quadriplegic for the last five decades. This one-time cowboy really gets me, and strongly encouraged my fight saying “Cancer’s one more wrinkle on your ride, Cynthia, but it’s still your ride.” After a long pause, he continued, “You’re a thoroughbred, and you’ll run till you die.”

I’m not dead yet. And yesterday I decided that I’m going with the chemo, come what may. Let the CRPS gates of hell open wide. Despite this god awful disease’s every effort to end me, it hasn’t done the deed. After all’s said and done, the only way I know how to live is to stare down fear, strap on my boxing gloves and take another swing.

Nah, I won’t be swimming with dolphins. Instead, I’ll be leaning into a headwind of a category 5 shit storm, with a dazzling, impermeable, indefatigable umbrella of love and support.

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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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catz

RUN FROM THE CURE | The Rick Simpson Story (search it online) CANNABIS as the CURE FOR CANCER and many other diseases.

Cheri Furr

I greatly admire and support you in this arduous journey. You DON’T deserve this, and I will cheer and pray for you as you go through this treatment. Your writing is inspirational, and I sincerely hope you weather this Category 5 “shitstorm” with grace, dignity and survival. As we tell each other, fight to stay alive, and fight through the pain.

Iraida Lopez-King

Cynthia , I just read your ” category 5 storm” blog. As I read, I remember going thru same ordeal. I have had CRPS II for 10 years and, Oh Lord, is a brutal disease. In 2018 I was diagnosed with Invasive breast cancer, Triple Negative, Tumor 3. Yes, my doctors were not encouraging but they created a plan : chemo, mastectomy. As the biopsy results arrived, the radio was included since now I have Metastatic breast cancer. I had 2 types of breast cancer and spread to lymph nodes. At some point during chemo, my doctor wanted to stop. The CRPS had taken over and the pain was out of this world. I requested a break but kept going. You are brave Cynthia, is going to be a hard road, but you’ll cross it. What is going to be the final sign at the end of the road? God is the Only who knows.
On side note, would like for you to find information on the Scramble treatment. It did help tremendously when I did, it was the cancer that brought it back. I’m going for it again at the end of the year, hoping my pain gets some relief. I wish you the best on your journey.

Dearest Cynthia,
Your beauty, intelligence, courage and admiration are absolutely unbelievable. You’ve made my day by saying you are going to fight. I’m going to fly and fight right along with you in spirit. The things you’ve said the past few years have made me stand up and pay attention, as well as the shake the dust off at times, so to speak. Your courage alone is such a beautiful gift from God. You literally give me hope that I can continue to fight the good fight also. Now honey I don’t have cancer but there’s so much else that’s wrong. I keep on keeping on for the sake of Love and a little tiny soul who has no one else. She is my world! You and John will definitely be in my prayers. I pray with faith and have learned that “faith can make all the difference.” The past two years have seemed like absolute hell on Earth but I’ve seen more miracles (not just answered prayers) but downright miracles than I could have ever imagined. Believe me, God is definitely still in that business. I’ve come to believe through my own journey there is a reason for everything. Life is not a bed of roses but it is most definitely worth fighting for. I tell my little one if it wasn’t for the bad times we wouldn’t know what good times are. My prayer is that God send you your miracle, that this won’t be as hard on you as anticipated, that God keep you strong and hold you just as tightly as He possibly can through this next journey. With much love as well as many prayers for you and John both.💞

Denise Bault

God is full of miracles; you are already one of them!

You’re definitely between a rock and a hard place. Truly sorry for your struggle. I hope the best for you. You always seem so upbeat. I am sending this with gentle effect, my sister had a lumpectomy because the surgeon said that’s what she chose. I have no idea why he didn’t give her better advice. It was less than a year and the cancer returned so there was no choice but to remove both breasts. And they did check one lymph node on each side. With a lumpectomy she did go through chemo. And I would not suggest getting breast implants like my sister did because that blocks images for cancer detection. I don’t mean to get in your business then it just seems like my sister wasn’t given all the information. I just wanted you to have more information than she received. You’re very blessed with all the people you have praying for you and that you have a awesome spouse. That much love has to have a healing effect. May God bless you and heal you.

Plus,

The surgery alone would likely be the cure, providing the surgeon gets “clean margins”
What type of tumor is present?

Chemotherapy would be indicated in the evidence or high probability of metastasis.
Otherwise, many would agree it’s a practice of defensive medicine and sometimes a profit center for the provider.
Still, doesn’t really make it easier for you to know.

If you are premenopausal and have estrogen positive tumor, the chemo will likely destroy ovary function and you will not produce estrogen – and will not be able to be prescribed a hormone replacement therapy. Prepare to be very uncomfortable, mentally and physically.

I’ve seen this with three girl friends over the years. To control discomfort levels, they were prescribed various benzodiazepines, ambien, amitriptyline drugs, muscle relaxers, sedatives of all sorts, gabapentin, SSRI and SNRI meds. This combination led to a number of days in and out of mental health facilities. Many of these drugs are fostered upon chronic pain patients.
These women are educated professionals. They are well now. All negative on chemotherapy.

As a male, I learned of the effect of no estrogen production in females. Similar to testosterone in males. I can see that men are just not capable of, or qualified to exercise authority on women specific issues.

In short, that’s what I learned. Also, you seem to have the “vibes” , the essential spirit, the true power to beat this. Plus the odds are way – way in your favor.

Thanks for all of your posts. They really helped me.

Kris Aaron

I’m very fortunate to be living with a long-term neurological disorder that, as my jewel of a doctor once told me, “Won’t kill you but will make you wish it would.”
Yes, the pain gets bad enough at times that I hope for a cancer diagnosis, but when I read your columns I realize I’m not yet at that stage. Still, I totally understand your choice and empathize with the burden you’re carrying.
While I would choose the dolphins over chemo (in my case, it’s a trip to the Ukraine to hug the lions at an animal sanctuary) each of us has to make our own peace with whatever crisis life throws our way. We learn from each other, and the best we can offer is a hug and a helping hand when the going gets rough.
You’re setting a glorious example, and we’re with you every step of the way, babe!

Alan Edwards

Stick with your original decision. You may actually have a better chance of getting your CRPS treated and the Intractable pain along with the cancer. Pain alone is deadly. The hammer may not fall on opioids for cancer and end-of-life for years- although the CDC and FDA have made it impossible to live like the majority of healthy Americans. A national disgrace.
Pain elimination and control of chemotherapy side-effects would be a huge blessing during your treatment and help your body fight the cancer. I have fought for 51years and am tiring of not being treated when treatments are there but denied by governing bodies. Prayers for you.

Kristen

Cynthia, I will be praying for you.You are very strong and you have so many of us cheering you on during this difficult time.Put those boxing gloves on and keep on fighting.Sending prayers to both you and John.

Wendy Homer

Cynthia,
I have CRPS and I have been reading the National Pain Report for the past two years. Your posts always touch and inspire me. You put into words many of my experiences, thoughts and feelings. Your writing ability is a gift – for all of your readers and to yourself. Hope you will keep on writing and hold onto hope.
My very best wishes,
Wendy

Adam Selene

Hugs and Prayers Cynthia. Be Strong, be yourself.

Cindy Deim

I’m so sorry to hear this. I will be thinking about you. I wish you all the best.

ElizabethR

At twice your age, I’d likely stick with your original decision, but frankly I have no idea what I would do if I were in your totally unenviable situation. In any event I join the legion of thousands in wishing you the very best.

Lisa Hess

Cynthia, I have read your book of your fight with CRPS. I have read all of your articles on this site. I understand your fears of the CRPS spreading with Chemo, surgery and probably pretty much any other treatment that is suggested to you. Last spring I was diagnosed with CRPS just to add to the other 7 autoimmune diseases in my body. I have a lot of bone, nerve and muscle diseases including OA, RA and early onset Osteoporosis. I have denied all treatments because of the chance of depleting my immune system more than it already is. It is a very difficult decision, especially not taking Osteoporosis medication because of my damaged spine of which is predicted will begin to fracture soon enough. Always, always follow your instincts of the best you believe will get you through to fight this horrible monster that has invaded your body. Doctors think they know our bodies, but only we, the individual patient, knows our body the best. I wish you success in treatment that it works and don’t give up if the first round doesn’t! You are a fighter, for that there is no doubt. SO, KEEP ON FIGHTING CYNTHIA, WE ARE ALL BEHIND YOU!

Cindy too

I can barely breathe from reading this.
There’s nothing to say other than best of luck.
And it ain’t over til it’s over.
I have a friend who had stage 4 breast cancer for many years, and now is cancer-free.

Billie

A person once had CRPS all over the body (not one inch spaired from pain)
Cancer took over, yet treatment not only killed the cancer it stopped almost all of the pain spread within the body. She gave it all to God heart and soul. For the first time she truly believed.
No matter what you decide know that if you truly believe God will heal you and use you as a vessel to help others.(as it seem you are already someone who helps others) It may seem at times you are at your worst, yet God will pull you through.If it is truly what you want.
You have to truly believe deep in your soul. Have no doughts.Let it all go.
God Bless You . May you be healed In the name of Jesus
Be Strong Prove they are wrong.

I hate to talk science at a time like this, Cynthia, but there’s something weirdly similar about cancer and CRPS.

Both conditions spread aggressively.

Both conditions manage to drag on for the longest time, not actually killing their victim outright, the way an Ebola virus might.

It’s almost as if they both work like parasites with a survival strategy. They do as much damage to you as they can, while you continue to pump blood and oxygen and nutrients to them in the effort to keep yourself alive.

A friend in Sausalito was pitching me a script idea for a movie, “Patient Zero”. It was inspired by the real story of a Navy vet who got exposed to something in a weapons locker fire, that made him sick. He’s guessing it was the depleted uranium in the armor-piercing ammunition. I’m guessing it was the flame retardant that’s added to the plastic explosive in the armor piercing ammunition. We might both be wrong. Point is, the guy developed cancer of the pancreas that’s fatal about 90% of the time. He persuaded a doctor to inject him in the pancreas with cannabis oil. The cancer went into remission. And stayed in remission. He’s been cancer-free several years now. He testified to a Congressional committee about why cannabis must be researched for it’s anti-cancer potential.

It’s good to know you are still in the fight, too. Safe journey, Cynthia!

Thomas Wayne Kidd

You’re I in my prayers and yes prayers are definitely answered. I admire your courage. Thanks for sharing this with us, we appreciate you much. Keep us posted on what’s happening. Your fellow-sufferer Thomas Kidd. God bless you and keep you.

Joseph

Best of luck maam. You seem to have a squad who IS behind you and who truly care.

On a side note, have you looked into using RSO (Rick Simpson Oil)?
If not it might be worth a Google if you dont believe your current options are in your best interest.

I do not have or had cancer, but I strongly believe in the tumor shrinking powers of RSO.

God Bless and be with you.

Amy Lewis

Cynthia, first let me say I’m sorry that you’re going through this. Second, let me tell you that as someone who has been fighting pain for 46 years I understand your hesitancy to knowingly enter this battle but I know you can do this! You are a fighter! Those who say to separate yourself from the negativity of your family are correct. You need all your energy to wage the battle you’re fighting. Let me tell you about my sister and I supporting our brother as he fought for his life against Stage 3 Esophageal cancer with lousy odds of survival in 2015. My sister and I stayed with him for 2 weeks each month and rotated shifts. We both traveled hundreds of miles to my brother to do so. I’m happy to say that he went into remission and against the odds has remained there. You will hear many stories like my brothers. Don’t give up!

Dave

I don’t have much to say except there’s such strength and courage in reading your post.
My heart breaks hearing the outpouring of love and support for your journey. For that I’m glad. I’m grateful to hear of a man’s desire to protect you if only he could. As a guy that’s my primary instinct and position.
I’ve learned my own stern lessons as I continue on.
I don’t consider deserve has anything to do with these circumstances. I’ve learned life does as it will at times.
I’m grateful your cowboy friend still has his boots on. This is how I gain courage from another.
Keep your left up, is age old advice in boxing.
I can hear in your words your left is up and with a heart still open to love.

Maureen M.

Dear Cynthia, You are incredible. You are beautiful. You are brave. You have always had immense support in your world…if even at times it didn’t seem like it.
After reading your last post I knew that those who know and love you best would supremely rally around you.
You have done so much for others and deserve all this love coming your way. Let it be your nutrition.
You have been handed some (more) difficult cards to deal with and I am saddened by that.
After reading this new post…I believe that I too would’ve made the same decision as you.
I have a strong breast cancer family history and have been forced to wonder at times what I would do if faced with the diagnosis.
As tough as it will get, please try your best to keep ‘positive for healing’. Try to keep stress from fueling your cancer. So many breast cancer women before you have left many lessons and strength to draw on.
Let God, prayers and the healers of the world influence your disease and treatment.
You are strong and have overcome very much. Hang on to your inner strength, for it will be challenged but never lost.
Blessings to you and John during this time and always.
John…you too are being tested. Hang on tight and take reprieves as needed. You are an amazing human being. With peace and prayers for you both, Maureen M.

Cynthia

Wow, what a story. I always enjoy your posts, so full of emotion. And I will be praying for you everyday. You seem like just a wonderful person. Do you know joni eareckson tada’s work and writing? She just went through stage 3 breast cancer, she’s paraplegic with a little use of her hands. And anne graham lotz is going through it too (Billy Graham’s daughter), she’s lovely and wise. Such beautiful women, all of you….praying for you….sorry your burden is so heavy. I’m 72, live with horrible back pain, sciatica, nondiabetic neuropathy both legs….I suspect another shoe will drop , as it has for you. Hard to know how I will do. I’ll worry about it later…much love to you, cynthia….

Alex Stephens

Cynthia, God’s speed girl! The road you walk is fraught with pitfalls. CRPS can try all it wants, but if it hasn’t done you in during your 40 year battle then nothing will. I to have the lovely disease, for over 20 years now. I’ve been at deaths doorstep a couple of times and I am forever reminded of Ian Flemmings introduction to a James Bond novel – “You only live twice…once when you are born, and once when you look death in the face”. For me that old Chinese proverb means a great deal. Like you, I have looked death in the face, but those of us with CRPS long term must be like cats – 9 lives. Keep staring the old man down girl, it is just another wrinkle in your ride. Be the thoroughbred Cynthia, ride til you die! Best of luck in your next fight!

Pamela Aylor

I have lifted you up in prayer Cynthia! May God guide you and protect you on your journey

Bless you, my dear lady. Prayers for strength, comfort, and peace as you go forward with any and every treatment you choose. Lord, have mercy

Virginia Null

Oh, honey, never give up hope. With God everything is in Jesus’ hands, and we know He is the Great Physician. God knows, dear, not doctors. I’m sharing with you God’s grace. He knows the whole situation, Cynthia. Try. Try the best you can, with all your heart, even if you feel like you’re not being true-just try this; give it all to Jesus. Even tho He knows it all, just tell Him everything from your heart: the anger, the pain, the why me, all the everythings, like you would the very last chance you had. Then ask Him what you want, and why. Then surrender it all to Him. And I’m praying for you. Just try it? You’ve got nothing to lose, and everything to gain. God loves you, and He feels your pain. Believe it. He gives you His grace. With all my love, Virginia

Alanna Wilgus

Have you seen a naturopath?
Supplement with Quercitin, Fisetin and a healthy diet. I am also praying for you.