Am I Ready to Accept That My Health Will Keep Declining?

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Am I ready to accept that my health will keep declining?

I often see so many people with chronic illnesses having to ask themselves this question. So should they face this sobering fact and just give up and adapt to their “new normal”?

Miranda Edwards

Having a disease like mine, health decline is inevitable. I have metastatic pheochromocytoma, a rare type of cancer that secretes an overdose of hormones called catecholamines. Each surgery, procedure and treatment takes a toll. Already living with pheochromocytoma cancer has its constant health challenges; it’s plagued me with subsequent adrenal insufficiency, severe post-operative chronic pain, multi-organ removal, extensive physical limitations and daily symptomatic attacks from the tumors. And these are only the major physical detriments.

Did I mention I’m only 25?

After my first surgery at 19 to remove my first dangerous pheochromocytoma benign tumor, I never quite recovered. The damage was too extensive. I underwent a complicated surgery, and it was difficult to come back from that. It becomes more and more challenging to get under control once the procedures start compounding, and you never really feel quite ready to take on the next.

When I took on the unwanted responsibility of living with what I was now told was pheochromocytoma cancer, I knew my health would decline even further, whether or not I wanted to accept that. There’s a certain reality we must possess when entering into these situations for our own well-being. We must have positivity for our survival and for those around us, but we must also be realistic in order to make it through for everyone involved. We can’t mistake realism with negativity.

I often say that I don’t feel I’m fighting cancer; I live with cancer. What I fight for is the ability to continuously mend myself back to health, piece by piece, taking back what this disease has stolen from me.

I fight to recapture the most important parts of my life. I fight to maintain an almost impossible level of positivity — one that is not superficial — and share it with as many other people who are fighting as hard as I am. I fight for hope when the odds allow for absolutely nothing but the opposite.

We fight for our lives, we fight to be able to smile, we fight to choke back the tears that threaten to come pouring out at any moment. We fight for the ability to continue to cope with everything we’re facing, so we can muster up the strength to continue to “live with” these diseases.

As I continue to live with this worsening illness, I have to ask myself like so many others living with chronic illness, “Am I ready to accept that my health will continue to decline?”

I’m here to tell you if your health does decline, be prepared to pick yourself up and press the reset button. Because that’s what it is: a new beginning. It doesn’t come without some devastation, but it isn’t impossible. I’ve had to do it every time; I am still doing it.

Yes, your health may worsen over time when you’re living with a chronic illness. This is why we must view it differently and be prepared to accept the pieces you lose are worth fighting for. Even though I’m physically at my weakest point currently and experiencing more pain than ever, I’m still slowly picking up these pieces.

Despite how badly I feel this time around after my latest procedure, I’m doing everything I can to feel a little better than yesterday. That counts for something to me. That’s part of my reset and my acceptance. What’s yours?

Follow this journey on Pheo VS Fabulous.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

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What Many of Those Inspiring Disability Stories Miss

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I saw this story on ABC News the other day, about a 16-year-old who lost her leg due to leukemia and continues to compete in gymnastics while wearing a prosthetic. It is an inspiring story. All of us face adversity in our lives, and it’s encouraging to know there are those out there who can fight through it.

I know these types of stories can generate strong reactions to some in the disabled community. And I’m starting to see their point. I also have cancer and I’m disabled. I’ve spent a couple years in a wheelchair, and I continue to need a walker and a cane, plus I need to wear braces on both legs. I’ve spent a lot of time over the several past years in intense physical and occupational therapy. I’ve seen others at therapy learning to use their prosthesis, and I can see their pain, frustration and determination. Seeing others struggle at PT has inspired me to push through my own struggles in becoming more independent.

There is something missed in these stories though. One is the cost in money and time when you need physical therapy. Therapy is tough, time-consuming and expensive. Consider prosthetics and braces. They are expensive and can be uncomfortable and painful. Those nice prosthetics you see athletes wear? They’re not usually covered by insurance. You need means to afford them. For those of us with cancer and other chronic illnesses, your body changes all the time. You lose weight, gain weight, age and so on. And that brace you had fitted six months ago? Guess what, it no longer fits, but insurance, (if you’re lucky enough to have insurance), may only allow one set of braces every two years. Then what?

Then consider life as you move into the world with your prosthetic, brace, wheelchair or walker. Yes, in the U.S. we have the American with Disabilities Act. It’s implementation is spotty at best. There are never enough handicap parking spots, and they get often placed in the strangest places. And no one seems to know how to build a proper handicap ramp. I’m fortunate in that I’m able to drive with an unmodified car. Modifying a car for someone is very expensive though. Let’s say you manage to drive to your destination, park and get up the ramp. You then have to deal with the dreaded front door. It’s as if the world only wants you to watch because you’re not invited inside.

The young woman in the ABC News story appears to have a lot of support from family and friends. I’m fortunate in this as well. I have a support network that provides the motivation and means to get me to my therapy and doctor appointments. But consider why we have these stories. Unfortunately, there are too many children and teens living with leukemia. Why don’t more of these kids have access to these types of prosthetics? Why aren’t more of them at the rehabs that provide the training to learn to become more independent? That’s the tragedy in these stories. The number of people in similar situations is such that we’re not unique or unusual. We’re just your neighbors, school mates and co-workers. We deal with life just as anyone else, with whatever tools and support we have available.

But we need less stories on inspiration and more stories about those obstacles, and on how as a society we can fix these obstacles. We need improved means and access to doctors, medicine, therapy, prosthetics and adaptive tools. Our U.S. health insurance system has to be fixed. We need a 2016 update to the ADA. So whenever you see another story on inspiration, please do something. Donate to your favorite charity, (my favorite is the Jimmy V Foundation). Call someone you know who may be struggling and offer to help. Call your congressperson or senator and ask them to revisit and update the ADA. We all need to inspire each other.

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A Letter to My Mother's Cancer, Liposarcoma

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Liposarcoma is a very rare form of cancer that forms in the fat cells of the abdomen.

Dear Liposarcoma,

When I first heard about music legend David Bowie’s passing from cancer, it broke my heart. Not only because he was a great musical talent, but it was a bone-chilling reminder how lethal cancer can be. It made me think about Mom and her battle with you, too. It’s a stark thought to know if you continued to silently grow, you would have eventually devoured her.

Mom
Justina’s mother.

Liposarcoma, I don’t know where to begin. Your name alone conjures up so many unsettling feelings. So many people have lost their mothers to cancer, it’s overwhelmingly nauseating. Cancer is nothing new to this family. We’ve faced thyroid and skin cancer in the past, and were successful. Unfortunately, you’re in a class all your own.

When I first heard of your presence in Mom, I was angry. Angry at every cell of your existence. It made me sick to think you formed as a Stage 3 tumor in Mom’s womb. The womb where my brothers and I began our existence, our first earthly safe haven.

Like a devastating tsunami, my anger was quickly overtaken by my fear, when Mom was scheduled for emergency hysterectomy surgery on November 30, 2015. As much as Mom tried to assure us how common hysterectomies were, when I learned that she had a 50/50 chance of surviving the surgery, everything inside of me felt like it was going to collapse. As much as others around me told me to have faith, I struggled with my deathly fear of what would happen to her as a result of removing you. My family’s hearts were still struggling with the death of Grandpa in April. We couldn’t handle losing Mom, too.

The day Mom went into surgery, the world felt like it stopped spinning. It felt as though I was in the Twilight Zone, desperately trying to find reality. Nervously, I clung to my cellphone, hoping they could remove you without hurting Mom. The surgery was scheduled to take only two hours. Yet, after two and a half hours, there was no response.  Multiple thoughts started to race through my mind: Did something go wrong? Was there a complication? Is Mom safe? What’s going on? With no response, the next few hours passed at a snail’s pace. I was in a nightmare from which I couldn’t awaken.

Finally, I got the call. After five hours, the surgery was done. Mom made it through the surgery, but with numerous complications and a blood transfusion. Before the surgery, I didn’t realize how fragile Mom had been. It was far more complicated than we realized. Even with the surgeons removing the tumor, like trash left after a parade, you’re still lingering in Mom’s abdomen. To make matters worse, there’s also a suspicious mass in her breast. If that mass is another tumor as a result of you, then Mom’s planned radiation might not be enough.

Liposarcoma, I’m bewildered. I was raised to forgive those whose actions hurt us and those we love. I struggle to forgive you. If you were destroyed, then maybe I could forgive you. But you’re still killing Mom. I hate the pain and suffering you’re causing Mom and our family. However, if I continue to hate you, that hate will consume me. It’s frustrating. Realistically, I can only take you on one day at a time.

There are times I break down under the needless pressure you place on my back. Yet, no amount of tears will cure Mom. None of us will be at peace until every corrupt cell of your existence is destroyed. I realize you’re not going to go away willingly. Although Mom has suffered numerous complications in her recovery, it still hasn’t discouraged her. Seeing her look healthier gives us hope.

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. Check out our Submit a Story page for more about our submission guidelines.

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How Justin Bieber Helped My Daughter Stay Strong Through Cancer

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From the very first time my daughter, Quinn, and I heard Justin Bieber croon his song “Baby” in 2010, we were Beliebers. We played the song loudly and relentlessly, and to the dismay of the rest of the family, I also sang along passionately to the lyrics.

In 2013, Quinn, who was 7 at the time, was diagnosed with an aggressive brain cancer called a primitive neuroectodermal tumor (PNET). Justin unknowingly became a source of great fortitude for Quinn during her illness. Within days of being told she had cancer, she insisted we immediately fill out a Make-A-Wish Foundation form so she could apply to meet Justin Bieber. Without a second of hesitation, she knew what her one true wish was.

Quinn decorated her hospital room walls with posters of Justin and spent many hours watching his DVDs and listening to his songs.

“There were two special songs that helped me stay strong during my cancer treatments: ‘Believe’ and ‘Be Alright,’” Quinn said. “I told myself over and over again to believe I would get better and that everything would be all right. And it worked.”

The radiotherapy team got on board with Quinn’s obsession and made a giant-sized Justin Bieber poster for her to mark off each radiotherapy treatment she had. They also bought a Justin Bieber CD for Quinn to listen to while she was in the radiotherapy machine.

“When I had radiotherapy, I would get this funny smell in there,” Quinn said. “Whenever I hear ‘All Around the World,’ the smell comes back to me.”

If Quinn vomited from a chemotherapy treatment or got a temperature, she would say, “I’ve got ‘Bieber Fever’ again.”

Roanne Barnes Hautapu’s daughter, Quinn, with Justin Bieber.
Roanne’s daughter, Quinn, with Justin Bieber.

Quinn spent her 8th birthday at the Ronald McDonald House in Auckland, New Zealand. My Canadian friend, Natalie, sent us Justin Bieber-themed party supplies, and Operation Sugar organized a cake.

Within a few days of finally returning home and after months of treatment in another city, Make-A-Wish advised Quinn that she would get to meet Justin and attend his upcoming concert. She had harbored her dream, her wish, steadfastly for many months. It had helped her during some of her sickest days. It had given her a goal, something to look forward to. And now it would finally happen.

The pure unadulterated joy on Quinn’s face when the Make-A-Wish volunteers came to our house with all the details is a moment seared indelibly in my mind. Quinn had believed, and everything was going to be all right.

The day dawned. Quinn made a little photo album to give to Justin depicting his unwitting involvement in her life and wrote him this letter:

Quinn's letter to Justin Bieber.

Justin took it from her respectfully, hugged and kissed her, autographed merchandise and posed for photos. He was such a gentleman — courteous, charming, gently spoken.

Justin Bieber has granted more than 250 wishes through the Make-A-Wish Foundation, according to Today. Pretty impressive for any young man.

The power of a wish.
The power of a dream.
The power of believing it will be all right.

Follow this journey on Facebook at Quinn’s Quest.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. 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. Check out our Submit a Story page for more about our submission guidelines.

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A Letter to Myself on the Day I Found Out My Daughter Had a Tumor

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Right now you’re sitting in between an exam table and a wall. You’re on the floor. Although you can hardly see through your tears, you see the doctor sitting across the room in her chair. Your husband is crouched down over you, holding you. Your little girl is just a few feet from you, playing with a toy, and thankfully, oblivious to what is going on.

The doctor just told you your 16-month-old daughter has a tumor on her spinal cord … there’s a room waiting for you at the children’s hospital … you need to go right away … there will be a neurosurgeon there who will go through the details of surgery … a surgery your daughter will undergo the following morning.

Just like that, your whole world has changed.

As you drive to the children’s hospital, if I could, I would hand you a letter.

Dear You:

I know you’re wondering how this happened. I know you’re certain it’s all a mistake. I know you think it’s impossible; that this must be a dream. And you’re angry. You don’t want to go to the hospital. You don’t want to watch as your baby is wheeled away from you and feel helpless, stuck in a waiting room.

Your daughter’s journey with cancer (yes, I said cancer) will start out with surgeries. There will be two of them. After the second surgery, her tumor will grow back, and it will be then that the oncologist will recommend chemotherapy.

Once again, just like that, your whole world will change.

You will get used to saying cancer, to saying your daughter has cancer. Eventually you’ll be able to say it without pausing before it comes out of your mouth. Your voice won’t crack. It will become part of your everyday vocabulary.

You will be so sad at times you’ll wonder if you’ll ever feel joy again. When you see piles of your daughter’s hair strewn across the couch or her bed, you’ll want to sob uncontrollably. Yet when the last strands of hair finally fall out, you’ll look at her and be in awe of her beauty.

Little girl in hospital bed drinking a beverage

Once again, just like that, your whole world will change.

You will be stronger than you ever thought you could be. You won’t cry every time the nurse comes to prepare your child for chemo. You will want to; every single time you will want to. But instead, you’ll do whatever you can to keep your baby happy. You’ll surprise her with a new package of stickers or a little carton of chocolate milk, you’ll flip through the TV stations searching for her favorite cartoon, and you’ll lie in bed with her and watch as her chest rises and falls with each breath. And in those quiet moments, when she is resting, that is when you’ll let your tears flow.

You will have to try to explain a lot of really complicated stuff to your toddler. Things you don’t even want to know about. Yet, when she looks at you wondering what is going on, all you really have to do is hug her and kiss her forehead and reassure her that she’s going to be OK. Right now, that’s really all she needs to know.

At this moment, as hard as it seems, the next couple of years will also be filled with so much happiness and laughter. And there will be so many times when your heart will dance with joy. It will dance with joy when the MRIs show a stable tumor, when her blood counts are good, when her hair starts to grow back or when you go to the grocery store and can’t help but smile as she pushes around a little cart while wearing a pink tutu. Try to find moments in each day that make your heart dance. And if you’re having a tough time, let your daughter show you how she can dance with her shadow. Trust me, it will be these moments that get you through.

There will be many times when you’ll wish it was all over … one day it will be. Eventually, chemo will end. And on that last treatment day, you will watch as your daughter blows bubbles, dances in the dark with the nurses (which will become part of her chemo day routine) and smiles for you as you take a picture of her holding a sign declaring it’s her final day of chemo.

Little girl holding sign that says "Today... I finished cancer treatment"

And again, just like that, your whole world will change.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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. Check out our Submit a Story page for more about our submission guidelines.

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5 ‘Supportive’ Things Not to Say to Someone With a Terminally Ill Relative

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People mean well. When you have a relative with a terminal illness, you depend on family and friends to lean on and support you. Sometimes, those people say things that are ultimately unhelpful, primarily because they are at a loss and want to say something. What follows are five things that were said to me when my mother had brain cancer that were actually more damaging than supportive, even though I know my friends and family said them with the best intentions.

girl wearing sports jersey with arm around mom
Kara and her mom.

1.  “You’re so strong.”

When my mom was dying of brain cancer, I had so many well-intentioned friends and family members tell me I was so strong, if anyone could handle it I could, and that I was the strongest person they knew. The truth was, I didn’t want to be strong. I wanted to break down, to tell someone how I really felt. I wanted to not have to be the strong one for once; I wanted to be able to lean on someone for support and strength instead of generating it on my own. Instead, I wish someone had said, “You don’t have to be so strong all the time. It’s OK to break down. I’ll be there for you to lean on.”

2. “It’s going to be OK.”

No, it’s not. The prognosis is bleak, and living in denial is maddening. Well-meaning friends and relatives may have wanted to reassure themselves, as well as me, that things would turn out OK. But I knew they wouldn’t. I was losing my mom, and nothing would ever be OK about that. Instead you can say, “What is happening is unfair and not OK. I’m here if you want to talk.”

3. “At least she…”

Can still think clearly. Can still walk. Doesn’t have XYZ-type cancer. I think this type of talk is invalidating. Everyone has their own journey, with ups and downs, highs and lows. There is no need to compare my journey with the journey of someone else. I know you might be trying to look on the bright side, but that is diminishing my own experience. Instead you can say, “I’m so sorry that she is suffering. This must be really hard. How can I help?”

woman on bed with her daughter
Kara and her mom.

4. “Everything happens for a reason.”

The last thing I want to hear as someone with a terminally ill relative is that everything happens for a reason. Because while I watch the hair loss, the loss of mobility, the incontinence, the suffering — I really don’t believe there is a good reason for this to be happening. It sucks, plain and simple. Instead you can say, “It is terrible that this is happening. Life can be brutal and unfair. I am here to listen.”

5. “Well, we all have to go sometime. It’s all in God’s plan.”

I didn’t want to hear it was time for my loved one to leave the planet. In fact, hearing that it’s God’s plan can leave me with a feeling of anger or resentment towards God for “choosing” for them to suffer. Hearing we all have to go sometime doesn’t make it easier when that time is upon me. Everyone’s journey of grief is different, and the fact that we all have to go sometime does not mitigate my pain. Instead you can say, “If you want to talk about how it feels losing someone you love, I am here to listen.”

What people need most when a loved one is terminally ill is your presence and support. Sometimes, just a long hug or a listening ear is what the person needs most. You don’t always have to say something; just being there is enough.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

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