The story of a Survivor
This special post is the wonderful work of Amy Gesell, a survivor who received treatment at The Breast Place. Amy was kind enough to write about her experience, from her initial diagnosis through her recovery. What we stand to gain from listening to the accounts of survivors is a deeper understanding of how cancer diagnoses affect mental health, how community is an essential aspect of the healing process, and the importance of regular screenings. This Breast Cancer Awareness Month, we wanted to shine a spotlight on some of our incredible survivors. Thank you, Amy, for sharing your story!
"In January of this year, I went to my GP for a “check-in and a check-up” about my physical AND mental health. I’d been unusually moody, short-tempered, was hungry all the time, gaining weight…all things we sort of chalked up to my age (46). Having no solid history on when women in my family begin menopause, I naturally assumed that this was where I was headed.
Also, I’d been having pain in the left side of my chest, which left me wondering if I was headed for heart trouble. But there was also something else…this odd undercurrent that something was definitely NOT okay. I just couldn’t effectively communicate what that feeling was, so I was left stomping around my house, angry and frustrated, which is a complete 180 degree turn from my normal personality.
It was THAT feeling, the one that I couldn’t express, that caused my husband to encourage me to make an appointment with his doctor.
I resisted, initially. We live in a very rural area and it is a major pain to go in to town, get to know a new doctor, etc. Plus, I’d seen a different physician in that town once, years before, who was nice enough, but the follow up was lacking, so I never bothered to go back. Plus, I was sort of raised with this weird distaste for hypochondria. I had a cousin who thought she was dying every time she had a cold…she still thinks that way…and we still make fun of her for it. My point being - my belief was that if you’re not REALLY sick, don’t pester the doctor.
My husband’s encouragement and his concern over my mental health as well as my overall physical health helped me override this aversion to physicians and I agreed that he could make an appointment for me to see his physician, Dr. Gunther Rencken…who has literally turned out to be a life saver.
I walked into Dr. Rencken’s office with notebook and a litany of complaints. He patiently went through them one by one, helping me understand that I wasn’t going crazy. But, when we started to discuss my chest pain, he asked me the most important question of my life:
“When was your last mammogram?”
“Well, I had one last year. And it was normal. Well…normal for me. I mean, the guy called me back for more imaging, at which time he told me that he saw a spot that was probably just scar tissue from a previous lumpectomy of what was a benign tumor.”
And truly, I wasn’t worried at the time. I have fibrocystic breasts and for the whole of my life, had been running to physicians about the latest “lump,” only to discover it was “just a cyst.” I expected this to be the answer to all of my lumps for the rest of my life.
Besides, I’d always read that chest pain was NOT a sign of breast cancer…right?
My new doc then did something unexpected. He asked me to consider allowing him to, since I was already there, give me a breast exam (with a nurse present, of course) and especially the breast that had “the scar tissue.” I agreed and the look on his face as he palpated my left breast woke that little voice that had been begging for my attention for months: something, in fact, was not right.
He tried to reassure me by saying “Look, this could be nothing. It could absolutely be scar tissue. But rather than subject you to another mammogram, I’m going to refer you to a great doctor that specializes in this. Would you be willing to go see her? She is in Charleston, but it will be worth your time.”
I agreed. I received a phone call from Dr. Jennifer Beatty’s office at The Breast Place that very afternoon and they put me on the books ASAP.
A week later, I was in her office, oscillating between fear (OMG, I could have breast cancer) and shame (OMG, I’m making a big deal over nothing.)
Dr. Beatty and her staff did (and still do) everything within their power to alleviate you of any shame or embarrassment you may be feeling.
They also allow you to accept your fear. It’s shocking to realize how powerful you can become when you are given permission and/or the support to look into the face of your fear and say “I feel you.” Because, oddly, the minute you accept that you are afraid, the fear subsides a bit. Your heart rate slows. You breathe deeper.
And I was breathing deeply when Dr. Beatty showed me what she was seeing on my ultrasound.
I was breathing deeply when Dr. Beatty performed a painless (and when I say painless, I mean ZERO pain) needle biopsy.
And I took a deep breath when she personally called me, less than 24 hours later, to tell me that I did, indeed, have invasive ductal carcinoma.
It was really late in the afternoon and my husband was in the shower. I left him a note saying that I was going to the barn. And I did.
I swept, I cleaned the windows in the tack room, I polished the wood on the walls, cleaned some tack and watched the sun touch down on the horizon and wash everything in gold. How could this horrible moment be so beautiful? Not everyone may have this experience, and I’m sorry for that. But truly, the only thing I could do in that moment was be quiet, be gentle, and appreciate the beauty of the sun going down.
It took me four more hours after returning home to screw up the courage to tell my husband. Only two years prior, he’d lost both of his parents to cancer, 12 weeks apart, not knowing until their last days that they had cancer. (His mother, a rare and fast spreading uterine cancer and his father, a tough old Texan who’d had cancer for some time and had simply never shared that fact with his
family.) When I said the word “carcinoma” to him, he grew very pale and asked me what that meant. It took me days to realize that he thought that it meant that I was going to die…and soon. My heart broke for him more than my own. I mean, I love myself and I don’t want to die any time soon and certainly not from THIS, but it was in that moment that I realized that, no matter the outcome, he was going to suffer, too.
Dr. Beatty is a take charge, no b.s. leader and I am convinced that this is why I have fared so well. She and Dr. Rencken had me with orders for CT scans, MRI and bone scans before we made our plan of attack. Once the scans gave us the all clear, we moved forward with the plan of:
Nipple sparing mastectomy of the left breast.
Two weeks healing time (my tumor was really close to the skin, so we wanted some time to get the blood flowing to all the right places) and a replacement implant.
I’d be on the beach by the end of the summer!
But life, as we have already learned, holds lots of surprises for us. The presence of cancer cells were found in one of the lymph nodes removed during my mastectomy…so our plans had to change and another soldier was engaged to help me keep marching forward.
Dr. Beatty worked with Dr. Yannis Bellil, an oncologist in Charleston. We then changed our plan of attack. To use his terminology, we, via mastectomy, had “plucked the dandelion from the green at the Masters Course (golf reference).” Now, we had to cast about to make sure no more dandelions were going to pop up.
I engaged in four sessions of chemotherapy, each delivered three weeks apart.
Some women tough it out and it doesn’t disrupt their lives in the slightest.
Some women have days where they’re bad, but some good.
Some women stay very near a toilet and refuse food and water and have to get fluids administered to them every time they show up for chemo because…well…that’s just how their bodies handle it. (Me. I was that woman.)
To say that chemo was hard on me is an understatement. I don’t know why I didn’t handle it well, but for the three weeks between, I did not eat for two and then ate like Michael Phelps prepping for the Olympics for the third in order to maintain a good weight. I lost weight, but never so much that medical intervention was necessary. Also, I would have odd reactions two weeks in: my lips and eyes would swell as if stung by bees or something. So EXTRA steroids always had to be on hand.
There were days when I thought:
“Yep. You’re dying. This is it. They were wrong. You’re a dead duck.”
And as the chemotherapy dissipated from my system, I’d get strong again and think “What the hell was that? You’re not a dead duck! You’re a roaring tiger! A bucking, Hancock-bred chestnut mare! (Horse people will get that.) You’re FINE.”
And then we’d start all over again.
Speaking of which, I don’t ever WANT to do it again…but looking at the quality of my life right now, I would do it all over again in a heart beat.
Then came radiation! Ahhhhh! Radiation! The longest shortest treatment of one’s cancer life! Every day, I would make the 1.5 hour drive to Charleston, kick back and practically fall asleep as the radiation techs told me to “breathe in, hold it, breathe out.” (Which I still hear in my sleep…) Between my radiation oncologist, Dr. Clay’s, bright and funny attitude and the incredibly kind staff, radiation was a breeze. Costco sized tubs of Aquaphor helped my skin stay pretty unscathed, too. I’ve heard that some women suffer terribly during radiation. I am fortunately not one of those women.
I am what Dr. Rencken promised me.
I am what Dr. Beatty promised me.
I am what Dr. Bellil promised me.
I am what Dr. Clay promised me.
I am what I promised my husband I would be:
I am okay.
Do I have days where the panic hits me and I stress over whether it’s coming back for me?
Do I work myself into a frenzy over things like “toxins” in everything from my water to my cosmetics?
Am I afraid that if I indulge in a full-fat, whole milk vanilla latte, that an army of cancer cells will awaken and attack me once more?
Am I obsessing over how close to perfect my plastic surgeon can make my breasts look after having been through so much trauma?
Absolutely. (And on some days, absolutely not. If it ever came down to “Living Flat vs. Dying with Curves,” I’m choosing living flat. I understand that not everyone will understand that, but it’s my own choice.)
Do I get that awful crushing feeling in my chest when I hear that someone that I even tangentially know has died from breast cancer? Or that I get sick to my stomach when I remember that one of my “cancer buddies” has metastatic breast cancer and there’s nothing anyone can do other than what they’re already doing? Yes, yes, and yes.
Also, I need to say this: my cancer was a slow growing type and I probably had it for quite some time before I was diagnosed. I am still not fully recovered from chemo and surgeries, but I still PHYSICALLY feel better than I have in two years. I suspect that the phantom “exhaustion” I was feeling for the two years prior to my diagnosis had something to do with the fact that I had cancer. Maybe. Maybe not.
Oh! And the hair thing? Shit. I thought it was going to break my heart. It didn’t. I may never have “mermaid hair” again, but I didn’t look terrible bald, I didn’t look bad in the “GI Jane stage,” and, frankly, it’s been fun wearing wigs with hats on occasion. (Wigs alone didn’t work for me. They always looked “wiggy.” This may not be the case for everyone!)
If you’re still reading this, here are some things I want you to know:
Yes. I still hate a hypochondriac…but what I think about hypochondriacs isn’t any of your business. IF YOU FEEL OFF, GO SEE YOUR DOCTOR.
If you have a family history of not just breast cancer, but ANY gynecological issues (PPMD, raging PMS, heavy bleeding, fibroids, etc.) ask your physician about what you can do for earlier screenings for breast and other gynecological cancer. Correlation is not causation, but I am convinced that my life-long hormonal issues absolutely have something to do with me being susceptible to the type of cancer I had. If I’m wrong, your doctor can tell you…BUT ASK.
Get to know your breasts. If you have a fibroid issue like I did, ask your physician to help you learn about the difference in the “feel” of a cyst vs. “something else.” And always schedule an appointment if something new pops up. Don’t feel that you’re “a bother.”
DOCTORS WANT TO HELP YOU. And they would love to help you before the situation is dire. So please, don’t forget regular check ups…hell, schedule them on your birthday as one friend of mine does. That way, you never skip it!
I will admit that I have some ways to go before I feel that I can “move on” from this. I’ll be looking into the face of fear every day for at least the next five years before I can breathe easy again. I’m on a hormone blocker, menopause hit me like a ton of bricks, but shockingly, I am not miserable.
And I will never be miserable again.
My doctors went out of their way, they worked hard, they organized, they pulled together, they DROVE ME through the scariest thing that has ever happened to me and by doing so, gave me the power to keep putting one foot in front of the other when I was weak and to swing out with every jab and punch I had when I was strong. I owe it to THEM and to MYSELF to take the life I have left and enjoy it. Despite the occasional fears, control issues and neuroses that pop up, I am still happy. I am healthier every day, and I am alive.
To Be Seen; A Personal Journey
Thanks to our incredible followers and supporters, we have another incredible survivor story that we are very proud to share with you. We hope these words bring you comfort, peace, and hope.
This hasn't been the spring that any of us could have imagined. But, we are still marching on. We are still here for you as you continue to fight your battle, continue to heal, and continue to carry on every day. A few months ago, we shared a survivor story about Savanna James. Her words continue to echo in our hearts and minds, and we hope they have stayed with you. Just a few weeks ago, another survivor story came into our world, and we are very proud to share it with you here today. We want to introduce Michele Wheeler, her story, and her incredible nurse, Jim. Michele has shared this story on her own website, and we are very thankful to her for allowing us to share it with you here today.
To Be Seen
The birthday party was going to be phenomenal. He stood over me explaining how his wife had to bake three cakes - three! - because they invited all the kids in both classes. I lay trapped in tubes and wires and blankets and gowns while his words passed through the air above me. Some people might think they were going overboard for a four-year-old. Other people might. Not anyone in this room of course. Radiologists rule in this room. I stared at the ceiling thinking What in the ---- is happening here? as the masked techs oohed and awed over those cakes and the balloons and the bouncy house. Trapped, I tried to ignore them all as he shoved a needle into my liver to grab the sample that would confirm if I was dying of cancer or not.
That was three years ago. The sample came back hot. Now, I was back in the exact same hospital, the exact same radiology department, for another biopsy. This time, we were looking for mutations that could provide more treatment options. I insisted on a different surgeon, and I got one, but the stench of frosting and the memory of that big fat needle were still very much with me. They told me, back then, that the meds would give me an I-don’t-care feeling, with a little amnesia mixed in. But I remembered. Oh, believe me, I did care.
And so I told them, now, how the baggage from the last liver jab was increasing my anxiety beyond the more “standard” biopsy stress. I’m just barely hanging on here folks, I told them. Please help me out by upping those I-don’t-care meds and skipping the talk about your outstanding personal plans, thanks so much.
Sounds fair, they said. That’s exactly what we’ll do.
I didn’t used to lay it out that way. I let uncertainty and fear overwhelm me into passive obedience. Because certainly all those nurses and doctors had been through whichever procedure far more times than I have. But after years of cancering, and too many appointments left feeling undervalued, I’ve matured into the realization that I am, in fact, an expert in Me. More so, I’ve come to appreciate how much doctors and techs really do want to get it right and telling them how I want it just makes it easier for everyone.
Does it actually need to be said that you shouldn’t talk about your kid’s happy party during a terminal illness reveal? And honest feedback, the part of me that gets angry every time I see a birthday cake, would readily join you in hanging up that first surgeon.
But the part of me that needs to let go of that anger remembers that not everyone has experienced the sharp side of the needle. And so yes, it does need to be said.
It needs to be said because maybe he was trying to distract me by talking about that party. And maybe it would have worked if he just would have said first, I am sorry that this is happening to you. Then I could have said, Tell me everything about that bouncy house.
My med guy came, Jim, came in then to introduce himself. He managed to strike up small talk that seemed well placed, asking me about my kids a bit, surface questions, with just enough about his own kids to keep the conversation going. He was gentle. He let me know that I’d get my I-don’t-care meds after just a little more prep.
He wheeled me into the biopsy room, and that prep got very active. There were at least another five masked techs hooking me up to wires and hoses. The radiologist came up then and reached across me to adjust the monitor he would use to look for a sampleable tumor with ultrasound. When he started pushing down with the wand on my stomach, just below my ribs, I told him, “Can you move that screen so I can’t see it, please?” As he did, I closed my eyes and said, “And no comments about the size of the tumors either, please.”
I could still feel constant motion around me, and then a quiet voice from just behind me, Jim, “Michele, I’m going to give you some of that anti-nausea medication now, okay?” I nodded, thinking but what about the I-don’t-care meds? Not wanting to sound like a junkie, I tried to be patient.
But I could feel it coming. Like the vibration on train tracks before any sound of the engine, before any hint of smoke coming from its stacks. I kept my eyes closed and wondered which would arrive first: the panic attack or the I-don’t-care meds.
Panic did. And I fought with it to speak, managing only, “I could. Now. The I don’t. Don’t care. Meds. I need them cuz I think I might run. I’m gonna…” I raised my hand just a bit to the radiologist, “So with the wand. It. The. Could you. Wait. Please?” He took it off my stomach and the room got very still. I kept my eyes closed to find the words, and finally managed, in a whisper, “I’m going to have a panic attack. I’m just about to and I need that anxiety medicine right now.”
With that, the radiologist patted my arm gently once, and let me know he’d wait outside until the meds kicked in. The rest of the staff left as well. But Jim stayed. He interrupted the quiet only to give me brief updates. I’m delivering those meds now, Michele. And then a few moments later, They should start working really soon.
It was more like I started leaking than crying. The tears just slipped easily from the corners of my eyes. With all the tubes and wires and blankets and gown twisted around me, I was helpless to do anything but let them fall. But I said nothing, because I thought asking for tear wiping was taking it a bit too far.
I didn’t have to ask. Before those tears reached my ears, I felt a tissue on either side of my face as Jim gently wiped them up. And yes, the tenderness of that did make me squeak out a few more tears. But it was far fewer than it would have been, had those tears fallen unnoticed and been left to soak my hair.
Thank you, I said.
You’re welcome, said Jim. And for the next few minutes, I lied there, leaking tears, and Jim sat behind me, wiping them up.
The meds finally kicked in, enough so that we could carry on with the procedure, but they didn’t erase the reality that put me there. I leaked, intermittently through the whole thing. One click. Two clicks. Tears slipped from my eyes as little bits of cancer and liver were pulled from under my ribs. I kept dripping while I counted three… four... five. I think it was Jim that kept wiping the sides of my face as I silently cried. I don’t know. I kept my eyes closed the whole time. But I do know that not one tear passed an ear, and that was an enormous comfort.
Because still wrapped in blankets and trapped in illness, I felt seen.
Thank you so much, Michele, for sharing your incredibly brave story. Our hearts were with you through every written word and will continue to be as you continue your journey. Thank you for lifting up the people in your journey, like Jim, who has helped you through it all. Thank you for sharing with us the need and the right you have to ask for what you need in every step of your treatment and beyond. You are an incredible warrior. Thank you for sharing this with us.
To learn more about Michele, read more incredible stories like this one, and to follow her journey check out her website by following the link below!
We would be honored to hear and share YOUR story too. We want to share your experiences to help to continue inspiring others just like Savanna and Michele have. If you would like to share, email us your story and a photo of yourself to email@example.com and you may be featured on our social media or in an upcoming blog post.