Diagnosis: The Worst

Diagnosis: The Worst

I knew from the moment I found out the lump in my breast wasn’t a cyst, that I had cancer. The concerned look in the technician’s eyes and serious tone in the radiologist’s voice tipped their hand. My biggest no-doubter though was having had CRPS for 37 years.

For the past decade or so I’ve said to my partner John on more occasions than I can count that I don’t understand how my catastrophic illness hasn’t given me cancer. “How can an organism that’s been attacking itself with this level of pain and fatigue for almost four decades not end itself?” Well the answer is, it’s doing just that.

I’ve never been a lucky person. Despite that, I felt the Gods were at last on my side when my doctors told me that if this thing was cancer, I’d most likely have the “good kind”, the one they know how to treat and is responsive to targeted therapy. True to form though, post-biopsy, my doctor lowered the boom that I have the worst prognosis – an aggressive Triple Negative malignancy. While not all that surprised, I was devastated.

Cynthia Toussaint

And angry.

I’ve taken care of myself, helped others and braved suffering my entire effing life. I’ve done everything right. And this is my reward?! With a dozen auto-immune diseases and their many co-morbidites, I’ve never asked “why me?”, but now find myself in the “why ALWAYS me?” camp.

There’s no good way to spin breast cancer – and for me it’s a pain-complicated, convoluted nightmare. My oncologist wanted to do surgery right away, but I said hell no because of the possibility of spreading CRPS. So we’ll start with chemotherapy. I have a 50/50 chance that the chemo will be effective – and if my unlucky streak breaks, they’d like to follow with surgery to make sure they get it all. Again, I’ve said no to cutting, and my doctor has agreed to do the least invasive monitoring follow up. Of course this greatly lowers my odds of survival.

For my 50/50 chance, I’ll have the dubious honor of being bald and extremely weak. I’ll be non-stop retching and experience dangerous weight loss. I’ll also have “chemo brain”, the bastard cousin of “fibro fog.” They’re concerned about neuropathy – and God only knows what this is going to do to my CRPS. The cherry on top is that if I miraculously win this round, chances are the cancer will return with a vengeance in two to three years.

Like I said, I’m angry. Really angry. And scared.

My doctors think that my 37 years of CRPS-driven inflammation caused my cancer. I think they’re right, and I’m terrified that my body’s just going to keep producing it no matter the amount of cutting, zapping and tumor-poisoning they give me. At the end of the day, folks, when people say pain doesn’t kill you, they’re wrong. It’s terminal.

I’m waking up in cold sweats fearing the treatment will take my energetic, life-affirming spirit, the one thing my pain couldn’t rob me of. With that loss, I’d be a shell of Cynthia, and my life would be absent of meaning. Also, I don’t trust western medicine AT ALL. I despise the idea of spending my life as a patient in and around clinics, hospitals, doctors and all things medical. That “care” system failed me miserably – and I swore it off forever ago.

So after getting this diagnosis bomb dropped in my lap, I called the least “doctorly” doctors I know, two integrative medicine guys, both who are angels. They gave me excellent advice as how to best prep myself for chemo as a woman with high-impact, persistent pain.

Perhaps the most useful advise I got was when I asked one of these guys, “So how important is the being positive thing that I keep hearing about?” He sort of laughed, took a moment, and responded with, “It’s more healthy to be authentic.” THANK YOU! I don’t know anyone who is positive thinking just after a serious chronic illness diagnosis, let alone cancer. Just like when pain turns our worlds upside down, we must grieve our cancer diagnosis – and I’m nowhere near acceptance.

Despite all of this uninvited darkness, I’m mindful to see the bit of light that has peeked in. One swimming friend is going to shave her head when I lose my hair so we can go through the cue-ball phase together. John and I are going to New Orleans to visit good friends and self-proclaimed “tour guides” the week before my chemo starts – and they’ve offered a wonderful apartment, their treat. Last night a couple chauffeured us to a surprise scrumptious sushi dinner. Unexpected kindness is my new best friend.

A very close colleague who’s lost a number of loves to cancer called the other day. Gary reminded me that I have way too many people to help and good work to do. He ended with, “you’re one tough broad, Cynthia – and you’re going to beat this.”

Man oh man, I want to live. I’ve fought to live my whole life, and this is the fight of my life. Perhaps I’ll catch a break.

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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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Amy E Vogel

Cynthia, I don’t get on here very often because instead of finding encouragement and hope, I read a lot of cries full of misery and hopelessness. Although I can relate, it makes me feel worse.
However, YOU are one of the reasons I keep coming back. You have always been a breath of fresh air. I somehow feel that I know you. We share CRPS, but I feel another bond. I can’t properly relay how much your articles, your words, your life, your advocacy has meant to me! I want to provide encouragement to you but don’t know how. I have started and stopped this reply many times.
I have found some peace on this painful journey. I have found some coping mechanisms. I have even healed some.
I don’t know how much of our personal contact information you can see, as the author, but feel free to reach out any time. I would love to lend a shoulder! You have my ultimate respect, empathy and compassion. I wish you all the wellness in the world, peace, joy, and good health! May you be blessed as you have blessed others.

I pray daily for all of us who suffer daily. I will pray for you and those like yourself who want to continue living in spite of the damage being done to us and the needless pain. I wish you the very best and the strength to continue fighting.
God Bless You!

JaneF

Dearest Cynthia, I too am a victim of CRPS and I’ve survived Uterine Cancer, before the CRPS diagnosis. I remember a writer that had a website, Howard Black, and he gave extensive information regarding CRPS. He too had cancer. I believe you are correct in believing that ongoing, brutal pain robs us of our health and ability to fight off cancer cells. I believe in God and I pray for your healing, strength, and prayerfully, you will still find some joy along your journey.

David W Cole

Cynthia you’ve always been an inspiration to me, to hear of your diagnosis of cancer devastates me. If there’s anybody that can pull through this it’s you. You & I are the same when it comes to luck, if it weren’t for bad luck we’d have no luck at all. Sure seems to me, good people suffer a heck of a lot more than the evil ones do. Just remember there are thousands of us out here that admire you and the work you do to help people. I’ll be praying for your speedy recovery.
DWC

Kris Aaron

Girlfriend, you do what you believe is right for YOU!! I’m behind you 110% for whatever you choose.
I’m very angry this had to happen to someone who has brought us such good information and lifted our spirits with her writing. Cancer sucks!!
I have no suggestions and no recommendations. Just literary hugs for a brave woman.

Cindy Deim

I’m so sorry to hear this. I wish I had some words of wisdom for you. All I can say is, do what is right for you.
I’ll be thinking about you.

Barbara Snow

I am so sorry this has happened to you dear Cynthia. I hope you will beat it. However I pray for someone to tell me that I have cancer. Than at least I know the end is in sight for me. I’m never going to get enough pain medication to live a productive life again. I would greet the end of this life with great joy.

Erin Sullivan

To Marion Brady I have read about Ketamine to help prevent the spread of CRPS. I mentioned it to my doctor, (Kaiser, which I am rapidly losing trust in) He said “OH no! thats for surgery! But in the meantime they have cut my meds by 75% over two months-because of the alledged opioid crisis- and caused many flare ups, icluding the spread of this horrid condition.. I live in California and have had the same doctor for 12 years. Although he has done a lot to help me, as of late he is in fear of “higher ups” revoking his license. I am searching for a new doctor, but so afraid they would cut me off completely. I would love to know more about your doctor. Please email directly at serincath-at-gmail dot com. I would love to learn more about that treatment option, I have read a lot, but not from patients who have tried that modality of treatment. Thanks for that info and spreading the word, especially for Cynthia

Alice Carroll

Cynthia, I’m very sorry to hear of your diagnosis and I realize your angry. This is normal human behavior. My situation is quite similar although I’m 14 years past the same diagnosis of Metaplastic Carcinoma triple-negative breast cancer. My tumor was 5.5 x 2cm. I was told that this is a very aggressive type of cancer. 10 days after first finding the tumor I had a mastectomy, followed by chemo and radiation. No, it wasn’t pleasant but I’m still here!

My advice: Don’t fool around, have the mastectomy! Losing a breast is not like losing an arm, hand or a leg. At our age it’s a cosmetic thing and there are many options for a prosthesis. If I had it to do over I would have had both breasts taken. Chemo: Everyone reacts differently. You may not be nauseous, you may not have “chemo brain” I didn’t. The trade off to losing your hair (I admit that was hard) you’ll get to wear beautiful scarves and you get a much better chance to LIVE! I wanted to fight and kick cancer’s butt! Radiation: I had 35 treatments. They were a breeze, I had a bit of a sunburn. I had great doctors that I could talk to and I thank them for having saved my life. You cannot look at this as a death sentence. You are a great person and an positive influence on many. You’ll get through this. Keep your head up!

Marion Brady

Dearest Cynthia, I haven’t heard you or anyone say a word about using ketamine before, during and after surgery to prevent a spread. I thought it was a “definite fact” that it prevents spread. I’ve been getting ketamine at USC Dr. Richeimer, head of the Pain Management Center or Clinic. for years for CRPS pain and assumed that if I had to have surgery, I would use it to prevent a spread. Am I wrong? Why no word of it?

Rebecca Harp

Oh Honey, the cause of illness comes from the negative changes that began when sin entered the world. God entered His creation and died so that we can have our personal sin forgiven, which is a cure for our souls. But the damaged earth still affects our bodies and will until the end, when God will restore all things. It hurts me that you are suffering, but the real you inside can be well today. I want you to get physically well, but to die physically as a Christian, though heartbreaking to leave loved ones, is a glorious release into the arms of one’s creator/savior. Your emotions are normal and God does not begrudge you them. He understands. You can tell Him exactly how you feel. If you ask Him to, He’ll hold your heart’s hand every day of your life.This is life’s greatest joy, a relationship with God.The New Testament has so many answers, so much comfort. Find a modern translation. I wish I personally could remove your illnesses. I’d trade places with you if I could. Love and prayer, Becky

Rochelle Odell

I am so very sorry Cynthia. It is a diagnosis a woman never wants to hear. I pray they caught it quick enough to at least halt it from becoming worse. You are in my heart and prayers. Like you I have often wondered would my battle with CRPS now in my 27th year ever cause cancer. Pain is such an evil entity, wielding it’s power over our whole body. You are such a strong person and fighter, you have to overcone this new foe.

Cousin Laurie

Cynthia, so sorry to hear this! We will be thinking of you and cheering you on from the East coast! Much love to you!

Erin Sullivan

Cynthia , I am an RN (retired). I too have crps since age 14 when I was hit by a car and had mutiple compound fractures and in a body cast for six months. that was in 1971. I have been in pain my whole life as well. PLEASE, listen to my story. Almost 5 years ago I was diagnosed with breast cancer. I had the surgery, a lumpectomy not mastectomy. I tried one round of chemo and it nearly killed me. I still went bald, and spent 3 days in hospital trying to keep down anything, but I kept nothing down. I was on an IV the whole time. I felt like I was run over by a truck. So I said no thanks to further chemo. By the way, Chemo was developed for war soldiers who were exposed to sarin gas. Not to treat cancer! Don’t do the chemo! Not until you reconsider all the side effects, and research alternatives, which there are! Big Pharma just doesn’t want you to know about them. Chemo is very lucrative and cancer is “big business for big pharma” I did massive research on this.I did a lot of reading on homeopathic medicine and read books by Paul Stamets, a Mycologist, about healing mushrooms. He was on TED talks. His own Mother was in stage 4 breast cancer and had the surgery, and took Turkey Tail mushrooms. She was in her 70’s and is still alive. No cancer. I made a lot of life style changes , mostly in my diet. Yes I have pain in my breast, but not every day, at all. But I am ALIVE, and chemo kills! Not saves lives. and 75% of the people who do the full round DIE (usually within 6 months.) It’s a horrible agonizing death. You wont find this info on mainstream news or from Pharmaceuticals or even charity orgs., like A.C.S. “They” don’t want us to know that there are alternatives. They need to make their money. And in America, unfortunately that’s what it’s all about. The money. Please don’t despair. I was (and still AM) in your shoes. Look up Paul Stamets, Turkey tail mushrooms, and watch the TED talks with him as the guest. Thinking good thoughts for you

Wendy Paley

Dear Cynthia, even though I do not know you personally, I read all of your posts on this site. You are an incredibly strong and brave woman and certainly this is such a cruel thing that life has handed you. From the bottom of my heart I am so sorry to read this bad news. I will be praying for you every day to beat this cancer and to be able to continue helping so many people as you have always done.

Karen A. Stacy

Listen up kid, we need you❣️

Cindy

Cynthia, I’m so sorry. It’s just another super example of “life isn’t fair”.
You’ve already had more than your share.

I hope this helps – I met a woman a few years ago with Stage 4 breast cancer. We became good friends. A few months ago, she was declared cancer-free. Her oncolygist said that if she were a new patient, he’d send her home with a clean bill of health.

She’s staying on her monthly chemo as a precaution. But she went from Stage 4 to “stage zero”. Total surprise.

So, best of luck. And as horrid as it all is, you are blessed to have a man who loves you and good friends to help you thru this.
Many of us arent’ so lucky, esp after years of chronic pain which have caused people to drop out of our lives.

Sandy Auriene Sullivan

Good luck!
Seek another opinion on removing breasts!

My sister has non aggressive double breast cancer.

She’s opting for a double mastectomy in a few weeks.

My brother has been end stage since November 2016.
Surgery held cancer off for 13yrs.

Chemotherapy otoh is not only incredibly painful it’s weakened him while making the end of his life a misery!

Cancer often reoccurring years later as we’ve seen in our brothers very aggressive cancer that has convinced my sister for such drastic surgery.

I too will have a double performed if my genetic testing comes back positive.

And, I have CRPS….
Only thing helping me are my choice in shoes. Dumped enclosed shoes for the podiatrist recommended Birkenstock.
Foot was swollen now its normal size and able to stand/walk more than 30yrs ago (b4 CRPS)

Wendy

Cynthia,
Thank you so much for courageously speaking your truth. I also have CRPS and have read many of your posts. Your words have always been helpul, understanding, inspiring and validating. You give so much to so many. I pray all that good energy comes back to you in the form of love, support and healing.
It never hurts to believe in miracles.
Wendy H

Dear Beautiful Cynthia, I’m so very sorry to hear of your news. You are such a special soul, inside and out! I have prayed to God that he will bring you through this and your outcome will be stronger than ever. Not that someone else’s story should make us feel better although I would like to share someone else’s story with you. Several years ago a friend of mine was diagnosed with the worst case of breast cancer possible. It came out of the blue. She had a double mastectomy, lost her hair and her husband but not her will to live. Today she is alive and very well, she’s also been on billboards for breast cancer awareness in our town. She went through a deep dark time as one could possibly imagine. At one point she told herself she could either give in to this or fight like hell. She chose the latter. She’s now stronger than ever and will tell anyone that if she had to do it all over again, she wouldn’t change one little thing. God gave her a brand-new husband who is absolutely amazing. The one that walked off and left her all alone of course wishes now he would have stayed by her side. She was a lovely person before but now she is so much more! The sheer joy and gratitude in her eyes and her heart shine for all to see, whether they know her story or not. I along with many other people will be holding you up in prayer and carrying the faith for you. May God be with you on this journey and bring you through!💞

ElizabethR

Life is definitely NOT fair! You, of all people, didn’t deserve this after all you’ve done for the cause of those living with pain. I’m a lot older than you are (82+) so not sure I’d elect to fight if I were in your shoes. It’s a very personal choice. Being non-religious, prayer isn’t part of my repertoire, but I sincerely hope that your extraordinarily bad “luck” takes a huge turn for the better.

Kristen

Cynthia,I’m sorry about your diagnosis.I also had Cancer and beat it and while it may kick you in the ass excuse my language Kick it right back. Your a fighter and you will come out strong! Sending Prayers and strength your way! You are not alone,we are all here for you.Blessings to you John and your Family.💚

Michelle Miller

Cynthia, I’m sorry to hear about your illness. I’m like you a CRPS and Metastatic breast cancer patient. I have accepted the fact and try to have a good day every day . Hope you get better soon.

Laurie

Don’t let them take the rest of your life, Cynthia, just don’t.
You’ve fought all your life, like I have, for some support…THEY will not support you.
The ONLY way to beat cancer is to get the immune system to recognize it as an invader, because the cells have your same DNA, the T-cells everyone imagines marching to eat it up just aren’t in the game.
You need to at least bring up targeted gene therapy if you want to live. Of course, it’ll rob you blind, but so will the cut, burn and poison route.
US doctors generally do not know a thing about this therapy. I wish I could give you some of my luck but I’m fresh out.
Nonetheless, I wish you all the luck in then world!
You are a brave woman!

Joey W

Wow! I’m so sorry for your double whammy. As a 7yr crps sufferer, I can understand all your concerns. You are a true fighter, keep that fighters spirit!! Never stop!!!

Maureen M.

Cynthia, I am deeply sorry to hear about your diagnosis. I have been reading your posts and website for 5 yrs. And yes, Gary is right, you are one tough broad! I consider myself one also re: my own diseases and handling life with them and I have no idea how I would handle what has been given to you now.
Please know this, if ‘positive vibes’ and ‘love’ can help at all…you will be on overload!
And that is a great thing. You have soooo many people out there sending their love and care.
You personally have an incredible in-person community surrounding you (which is once again evident with those who are already showing there love with dinner, your friend willing to shave her head, the New Orleans trip etc), and you have awesome John and so therefore hang on to those blessings!! They will feed your spirit along the way.
Many of us do not have an ounce of what you have around you.
I know that this is incredibly difficult but I also know that you survive this.
There will be so many prayers offered to God for your treatment and recovery so never forget that either. He is our Great Physician.
Keep strong buckaroo! You’ve got this. One day at a time.
With love and care, Maureen M.

Denise Bault

My thoughts and prayers are with you as you continue this very unfair journey! May God Bless you and keep you in His loving arms….

Gina

Your post today has me in tears. I’m SO sorry. No one deserves a cancer diagnosis, but someone like you, who has been living in pain for so many years, should have to get a diagnosis like this. I will keep you in my prayers. I hope you’ll continue to keep us posted as much as possible, although I can certainly understand if you must take a little time off to take care of yourself. Just give us a “head’s up” so we know you’re doing this–otherwise we may worry even more. Good luck Cynthia.

Theresa L. Negrete

Cynthia you’re helping me and I’m sure, many, many more. Thank you! 💖🌹 Many times I have difficulty putting my thoughts down. You’re a voice for the voiceless! You’re in my prayers! 🙏🙏🙏

Lisa Hess

Cynthia, I am so sorry to hear of this dreadful diagnosis! I’ve read your book and follow all of your posts. Your friend is right! You are a fighter and you will beat this. My prayers are with you on this journey. Keep your head up high!

Thomas Kidd

I am so sorry! I will recommend my Redeemer Jesus Christ. He is mankind’s only hope. I will be praying for you healing. If you are not a child of God I also pray that you would seek Him. You are in my prayers.

JoDawn

With you always, sis, no matter what. ❤️❤️❤️❤️❤️

Dena C

Cynthia, your words and experiences are always profoundly wise and encouraging. To so publicly live your life all the good and all the bad is incredibly brave. It sounds like you have a wonderful support network and very lovely people who truly love, care and respect you and your decisions. Enjoy them. Love them back with all you have. Most importantly allow them to help you wherever you need. It may be the only way someone can give back to you, a woman who has shown so much strength and integrity. It is times like these we need to allow others to carry us and our burdens as we become weak and unsure of what is ahead. You have helped so many people see themselves beyond a diagnosis and given us hope, let us return the same to you. Best wishes and many prayers for all you do today, tomorrow and always.

Barbara Mills

Sending up a prayer for you Cynthia – you are indeed a strong woman who has beaten a lot and I hope you beat this too. God Bless You and your family as well.

Dianne M

I’m sorry about your recent diagnosis. I can relate with waiting for the inevitable. I too have had inflammation (unmeasured on tests) for around 19 years. How long can it hold off? I’m actually going through exploratory surgery very soon and having repeat scans on my lungs for a few nodules found earlier this year. A small focus seen in my breast (possibly nothing) but I’ve been feeling my strength sap out of me on a faster scale over the last year with a sudden drop in weight, extreme fatigue different from my normal fatigue and a whole host of other new issues that have plagued me over this last year.
Maybe I’ll have an answer to those soon. I too, wouldn’t be shocked if it’s the ugly C word. I’m also terrified of chemo as I multiple chemical sensitivities and avoided chemo like drugs for my UC and chose a different route instead. Prayers that your journey is easy on you and things go in your favor. You’ve fought this long, what’s a little more, right? Sigh… Take care. Hugs to you.

Nanci Strunk

Dear Cynthia, I sincerely hope and pray that you succeed in your fight. A pain filled life is not what anyone wants and unfortunately I did it to myself by breaking my back at 15. It was a stupid childish prank but I am grateful to be here and walking. I hope that all goes well for you and your family. It is a terrible disease. Keep smiling, somehow when people smile back it seems sometimes ok. Will be thinking of you. Nanci

Alanna Wilgus

People always say “All we can do now is pray.” I beg to differ. The first thing we should do is pray. I will be praying for you every single day. It is a very powerful thing. I hope you can join me.

Kristin

You are a absolutely breathtaking. I am sending all the good vibes I can in hopes that you kick cancer right in the dick! (Pardon my French but I mean come on it has to have a penis right? Sorry fellas I love ya but if you were a chick you would totally get it) I dont pretend to know what you are going through but just know I stand beside you and cheer you on with love.

Jeannah

I am SO very sorry! Wishing you all the very best of outcomes and comfort for your heart and soul Dear Cynthia <3 I have sworn to my family if I got cancer I would be doing Rick Simpson oil. Please look into it. There is a website and Facebook group where there are many success stories as well. Rick doesn't sell it but on his website tells you exactly how to make it yourself.