When Someone Told Me I Had the ‘Good Cancer’

159
159
2

Good and cancer shouldn’t be used in the same sentence, period. Yet I heard it multiple times last summer after being told I had cancer. I sat there in disbelief. Not because I had breast cancer (I have been waiting for that shoe to drop for a while), but because there was absolutely nothing good about having it.

My experience has been that some doctors and medical professionals might use this phrase in an effort to soften the blow. Saying you have the “good cancer” is a way to make you feel better about where you fall on the spectrum of survivability. But for me, being told I had the good cancer diminished the disruption to my life, and the permanent changes to my body, that this disease would bring. While the intentions are good, it is misguided.

Does that mean that my mom had the bad cancer because she eventually died from it? Let’s say for argument’s sake I have a better type of breast cancer than she did. After all, my diagnosis revealed that I was only stage I and although my cancer was invasive, it was relatively small. I also have tubular cancer, which is a slow grower. The chances of it having spread outside the breast were pretty minimal. I was even told I could get away with a lumpectomy and only six weeks of radiation.

I suppose that is all good, but I still wouldn’t say I have the good cancer. For treatment, I elected to have a double mastectomy. Some might say that was a pretty aggressive choice. However when my mom was diagnosed 20 years ago with breast cancer, I was bumped into the high-risk category. Since then, every four months like clockwork, I have been checked. It has been a never-ending cycle of mammograms, ultrasounds and MRIs. In recent years, instead of feeling like I was taking care of myself, I began to dread these appointments. I worried that this would be the time my ticket was pulled.

When my last biopsy came back positive, honestly, I wasn’t surprised. My doctors had been watching that spot for a while. Having this cancer diagnosis finally gave me the permission to put an end to the routine check-ups and the worry that came along with each and every one of them. Choosing a lumpectomy would have still caused me to look over my shoulder. I would have always be waiting for the report to come back telling me I had another tumor. I have sat in the radiology consultation room enough to know that I just wanted to be done.

It has been six months since my life-saving, life-altering surgery. A double mastectomy with immediate reconstruction is no walk in the park. Despite lengthy discussions with my physicians, I was in no way prepared for the way I felt in the weeks and months post-surgery. Cancer wreaks havoc on your whole being, your life and those closest to you. It has no mercy. It doesn’t matter that I have the good cancer.

Recovering has been difficult both physically and mentally but I am healing and adjusting to my new normal. In all likelihood, I will live a long life and die of something other than cancer. That is good, but I will never accept that I had the good cancer. There is just no such thing.

dana freeman the mighty

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

159
159
2

RELATED VIDEOS

JOIN THE CONVERSATION

How I Learned to Stop Being My Son’s Nurse and Start Being His Mom

493
493
11

I’m a nurse and a mother. For many years, I prided myself in keeping the roles separated. Sure, both are caregivers performing tasks… but as a nurse, I distanced myself emotionally from patients. It was a form of self-preservation, a manner of coping that enabled me to help people. I felt like a superhero by day and vulnerable mother by night.

My worlds collided on December 9, 2014. My third son, Donovan Grant, was born with Pierre Robin Sequence. Donovan was briefly placed in my arms before he was taken to the NICU for respiratory distress. I was robbed of my bonding moment.

I quickly transitioned from vulnerable mother into nurse mode and emotionally distanced myself to cope with his diagnosis. I put my game face on and prepared for battle. I became task-oriented and introverted. I avoided contact with friends and family. I turned away visitors and opportunities for “company, a listening ear.”

I said I needed to focus on Donovan’s health, but I was afraid. I feared I would see pity in their eyes. How often had I, as a nurse, done the same when caring for families of special needs children, looking at them with pity? I feared they would see the flaw in my armor.

image1 (1)

I buckled down and consumed myself with Donovan’s biggest hurdle: eating. I obsessed over small volumes. I found a sense of calm in my focused state. I was a great nurse and we were rewarded with an early discharge from NICU in time for the holidays. As the NICU nurse walked us out with Donovan’s apnea and cardiac monitors, I lost it. The wall I had built up began to crumble… reality settled in.

I wasn’t clocking out of a shift; I was taking this patient home. He was my son.

Fast forward to three weeks later when we had our first appointment with Donovan’s craniofacial team. I fully anticipated we would schedule Donovan’s cleft palate repair by 3 months of age, after which he would be “fine” and we could get on with scheduling summer vacations and “normal” family life.

Reality check…

We left the appointment with an open-ended plan to “tweak” Donovan’s feedings and return to the clinic in a month. I cried. I was disappointed. I was confused. I was selfish. I’d invested so much hope in this follow-up. I had been naive. I thought we’d be rewarded with an “end in sight,” a scheduled date I could mark on the calendar as the return to normalcy for our family. January 6th was a memorable day; it was the day I grieved the normalcy that “had been” and realized life would never be the same.

I’d been shell shocked, and the days that followed only got worse. The ENT called us the next day to check on Donovan. He said he was genuinely concerned and advised that we admit Donovan to the hospital for airway management.

We packed for a weekend getaway. Donovan ended up in the hospital for thirty-five days. The initial intervention was unsuccessful; Donovan needed surgery. Our ENT proposed a procedure that was fairly new and innovative; he said he had discussed Donovan’s case with his mentor after our first meeting. He said when he looked in Donovan’s eyes he saw fear; Donovan couldn’t breathe. He deserved a better quality of life.

I was overwhelmed with fear and guilt. The past three weeks I had been Donovan’s nurse; I’d been task-oriented and emotionally distanced. I felt I’d failed him as a mother. I’d been in denial, too scared to tear the wall down and connect with him. I allowed his condition to obstruct our relationship. I was afraid to feel, afraid to be vulnerable in the face of something I had no control over. I was afraid of his diagnosis. I was afraid to be his mother.

Donovan was on a ventilator for 6 days. For what felt like an eternity of time I sat vigil at his bedside as a mother. I could no longer provide him the nursing care he needed. I jumped headfirst into the tide of emotions. I cried, I questioned, I bargained, I cursed.

I grieved everything that was and everything I had envisioned our future to be. I forgave. I accepted.

The day Donovan came off the vent was like a rebirth for us. Donovan took his first breath, I heard his first cry, and they placed him in my arms. I lived in the moment. I took him all in. I embraced the fear of uncertainty. This time I was ready to battle disability and disease, not as a nurse, but as Donovan’s mother.

image1

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

493
493
11
JOIN THE CONVERSATION

What My Son’s Misdiagnosis Taught Our Family

55
55
2

The day Ezekiel was born, the neonatologist warned us he probably wouldn’t come out breathing. We were going to see him and say goodbye. But to everyone’s surprise, he took his first breath.

His initial diagnosis, based on his brain MRIs before and after he was born, was the severest form of muscular dystrophy. For the past year, we have been on an online forum with parents, especially moms, and have mourned with them the loss of their children who have this diagnosis. We have had this dark cloud over our thoughts for a year and have thought each day that Ezekiel’s life may be his last.

We recently discovered that he was misdiagnosed. We went to a NIH pediatric neurologist who is an expert in different disorders. We also had blood testing done and found the answer. Ezekiel doesn’t even muscular dystrophy. He does have brain issues, but his muscles are normal. The doctor explained that his brain doesn’t send correct information to his muscles on what to do. He also most likely won’t have breathing problems, according to this doctor. We asked the NIH specialist what his life span would be and he said he doesn’t know, but it could be a much longer time than what we had thought for this past year.

trin p ezekiel the mighty

Ezekiel has taught us so much over the past year. If we didn’t experience his birth and life, we wouldn’t have learned to value the frailty, and miracles, of life. We now see suffering people and children much differently… with a truer compassion and empathy. Things that used to concern us are not very worrisome anymore. Much anxiety and fear have left us because we let go of the control we never had in the first place.

If we heard this news 10 months ago, any news would be devastating. This has brought us a new peace. We know he may not live many many years, but we believe that God allowing us more time with him is such a blessing. It may not be a smooth journey, but we believe it’s what God planned for us and we are privileged to walk this path, with his help.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

55
55
2
TOPICS
JOIN THE CONVERSATION

The Scary Moment That Made Me Stop Hiding My Epilepsy

23
23
0

Dear Juvenile Myoclonic Epilepsy (JME),

I don’t know where to start when I begin our story. It’s so personal that sometimes I feel like I’m talking about an old friend more than I’m talking about… well, you.

It took me so long to talk about you at all, that there are still times I don’t even know how to talk about you at all. When you first came to visit me, I didn’t know you were there at all. I just remember the feelings of frustration and extreme irritation, which were completely normal for a 14-year-old girl.

All the doctor’s appointments that were confusing to me, but seemed so completely necessary to everyone else in my life, I tried to keep them a secret. Just like I tried to hide you. I was a child still, not ready to accept that I was changing in yet another way. I only wanted to focus on what I could control, and I definitely had zero control over you and what you were doing with my mind and my body. I ached for some type of normalcy in my life, but you were just not going to allow that to happen.

The doctors diagnosed me with you, but they didn’t know the type until much later. Sleep studies, EEGs, and more tests. Different medications when one didn’t work the right way and my life began to seem like an upside-down merry-go-round. My high school was notified about you and I looked for a hole to crawl into, hiding you from my friends, hoping that my teachers were unaware.

In 2005, long after being diagnosed with you and finally given the type for quite a few years, I was on my way to the hospital in an ambulance in a state far from my family. They didn’t know I was on my way there and they wouldn’t know until I was out and back to where I was staying.

That woke me up: being far from my family, and having one of your appearances. I hated you for so long; I hid you from the world. Then I realized if I kept on like I was, that you could do far more than just “embarrass” me a little to someone who was uneducated about you. I finally found a better doctor, moved back to where my family was, and got medication that would help me properly. Since then, I haven’t had but a few minor appearances from you. But I know you’re still there.

suzette gorrell the mighty

You’ve been with me for 22 years now, almost 23, and I’ve learned a lot about you and from you.

Thank you for allowing me to do all I have with you. While I could do a lot without you, I do plenty with you as a part of who I am. Let’s keep our relationship just the way it is now. I’ll do my part, and you stay just how you have been.

No rearing up to remind me you’re there… I can feel you there.

Sincerely,

Suzi

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

23
23
0
JOIN THE CONVERSATION

When I Hear That My Daughter’s Apraxia Will Never Go Away

2k
2k
11

Hello apraxia. Hello global apraxia.

It’s hard to believe we’ve never talked, especially since I’ve certainly done my fair share of talking about you. When I gazed into my new baby girl’s eyes, and laughed along happily to her hearty giggles, I had no idea then that you were there, lurking in the shadows.

The day I discovered you were behind the delayed motor milestones and the lack of speech, I cried heavy tears and felt a weight I don’t think I quite have shaken yet. You certainly brought your A-game, global apraxia. I hate to admit I have felt defeated by you before.

However, you never managed to crush a small little girl’s determination, attitude, resilience and perseverance.

We are told you will never go away. Anything requiring a motor plan will always take “more repetition than most.” Oh, how many times have we heard that? I hated you once. I hated watching my baby girl struggle to speak, to jump, to ride her bike, to drink without choking. In fact I still hate you as I continue to see her struggle to dress herself, feed herself, and write her name. In fact, I don’t think I’ll ever quite forgive you when I think about the day she almost drowned.

Mostly though, I feel sorry for you.

laura smith daughter the mighty

You have no more power here in this house, because my little girl has shown she can beat you time and time again. She is a hero who wins daily, weekly, and monthly battles, and that winning is something you will never know.

Bet you didn’t expect something so strong to come out of something so small, did you? Well, we actually have that in common. My daughter’s bravery took me by surprise, too.

Because of your stubbornness, we only grow stronger and more confident, knowing that any obstacle in our way can be defeated with faith, tenacity, and an unrelenting positive attitude.

This post originally appeared on SLP Mommy of Apraxia.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

2k
2k
11
TOPICS
JOIN THE CONVERSATION

How I Persevered When Mental Illness Made Me Feel Unworthy of Love

149
149
1

Dear mental illnesses,

You almost took my life. Several times. I wanted to leave this world because of you, Depression. You, Bipolar Disorder, caused my moods to shift so violently that I’d be happy and on top of the world in the morning and suicidal by night.

You made me feel like I couldn’t handle you. Your control made me to believe I was a piece of trash, unworthy of love and happiness. I believed you for a long time — too long.

Borderline Personality Disorder, you were such a horrible nemesis that, for so long, I didn’t even want to admit that I had you. I hated you and what you made me feel and do. You created so much anger in me. You made me feel worthless, fearful, hopeless, dangerous and suicidal. I was out of control and loud, and I didn’t want to listen to anyone or try to do well. I couldn’t.

Anxiety, you told me I would never be happy with another woman. You’d wake me up in a panic nearly every morning with thoughts of wanting to kill myself because of who I am. You screamed at me that God would never love me if I loved my soulmate. I couldn’t eat. I felt nauseous and sick because of you overwhelming my thoughts and body with your lies.

But when I met her, my whole life changed.

IMG_0962

She loves me like no one else ever has or ever could. Thanks to her love and the help of the people I let into my life, I am no longer just surviving — I am thriving.

You all still linger, and I will always have to keep you at bay and remember to take care of myself, but I am handling all of you far better than I ever thought possible. I’ve learned that love truly does conquer all. I’ve learned that you will not defeat me. You will no longer tell me I’m unworthy or hopeless.

I know now that I can have hope. I do have hope. I’m living well with all of you! I’m happy and healthy now, and I will do whatever I need to do to make sure you’re out of my life for good. I will win!

Sincerely not yours,

Megan

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

149
149
1
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.