Posts Tagged ‘Large Cell Neuro Endocrine Carcinoma’

We Need Your Help

There are times in all of our lives when we get to the end of our ropes and need to reach out to others. Personally, it usually takes me reaching the last thread of said rope before I ask for help. I have a tendency of being self-conscious of burdening others around me. Cancer burdens everyone, and I cringe at the thought of it weighing on those who love and support me. Today, that last thread slipped through my grasp and here I am with no other choice but to ask for help.

Let me get you up to date. As you know, this last tumor that we prayed would be benign was in fact malignant. This is my fourth recurrence, and I will be jumping back into treatment soon. My diagnosis is rare. So rare in fact, there is not much knowledge or even funding for research to learn more about it. Large Cell Neuroendocrine Cervical cancer is aggressive and stealthy and won’t take no for an answer. There is, however, one man who has taken on the job of finding out more about my diagnosis and is researching ways to defeat this type of cancer. He is a doctor located at MD Anderson in Houston, and we have spoken regularly about my case. He is always kind and optimistic, and would love to help me navigate the next steps in my fourth journey through treatment. I, too, am itching at the opportunity to meet him.

Fast forward to this week. I have recovered well from surgery, and wear my new scars proudly. I have settled into the swing of daily life and realize I still hate laundry. Why do I think that will ever change? … I digress. We have recently learned that insurance will cover an appointment with the doctor in Houston. Hallelujah. God has intricately worked together nearly every puzzle piece, both big and small. The timing is perfect — absolutely perfect. I have an appointment set at MD Anderson for Tuesday, July 29th. That’s two weeks from yesterday. I am beyond thrilled to have the chance to meet with the only doctor actively teaming alongside me, trying his best to learn more about this disease. My appointments in Houston will consist of several tests, scans, and further research of my case. Everything will be put on the table, and based on his findings, he will recommend what step we should take next. Until I see this doctor, we are shooting in the dark. This appointment is vital to this fourth journey in my fight against cancer.

Without further ado, I’ll get to the point… I need help. Matt and I need your assistance in a larger way than we have before. We are in need of financial provision in order for us to get to my appointment in Houston.

Cancer is expensive. You know that. We know that. Though we recently received a financial gift from Ellen DeGeneres and CoverGirl, it has all been put towards our never-ending bills. The well has run dry again. It’s amazing how quickly that can happen after a few hundred trips to the hospital and thousands of dollars in life-saving treatments. Our insurance recently changed at the first of this month, and we are now required to pay everything out of pocket until we reach our new deductible.

Our deductible is $4,000, which is due up front at the time of the appointment. The great news is that once we reach that deductible, my treatment and testing (including scans) for the rest of the year will be 100% covered by insurance. The bad news is that we don’t have $4,000 nor the rest of the money required for flights, hotels, a rental car, and food for my week-long stay in Texas.

Here’s where you come in. Many of you ask regularly what you can do to help us. Typically meal gift cards are a great way to help during my recovery from surgeries and treatments. However, this time we are needing extra assistance. If you are not in a position to help financially, we completely understand and ask you to pray. Pray for wisdom, direction, protection, and ultimately, provision. If you are able to help financially, below is what we currently need.

  1. $4,000 to cover our deductible and the appointment and tests at MD Anderson
  2. Frequent flyer miles or airline buddy passes to help us book our flights to and from Houston
  3. Hotel points to help us book a room for our stay
  4. Cash to help with any aforementioned area that is not met and unknown expenses that may arise through our travels.

Thank you for allowing me to be open with you. Thank you for allowing me to be vulnerable about our needs. Though asking for help is hard, especially for me, I know that there are so many of our supporters who are just waiting for us to ask.

We have faith that God will provide. He doesn’t lead us to the finish line and expect us to cross it ourselves. He provides from beginning to end. The amount of puzzle pieces that He has already put together has me humbled and in awe at His faithfulness. I know He will figure the rest out.

If you are feeling called or compelled to help us, please let me know. You can reach me directly through email at derailingmydiagnosis@gmail.com. Also, if you have ideas up your sleeve, please share them. We need a team to conquer this hurdle, and are thankful for all of you who surround and support us.

Thank you.

Philippians 4:19 (MSG)

“You can be sure that God will take care of everything you need, His generosity exceeding even yours in the glory that pours from Jesus.”

Sick and Tired of Being Sick and Tired

I have struggled since surgery, both physically and emotionally. This journey that I’m on, though abundant in blessings, is a difficult one. There are great achievements and considerable disappointments.

Ready to head into surgery. (6/14)

Ready to head into surgery. (6/2014)

Surgery last week went well. The doctor was able to remove the entirety of the left adrenal gland and the tumor with good margins. Besides commenting that my insides were “sticky” because of the amount of scar tissue from my three surgeries prior, the procedure (though an hour and a half longer than expected) was smooth. He was able to complete the procedure laparoscopically, allowing my stay in the hospital to be swift. Surgery was on Monday, and by Tuesday night I was walking out the front doors to head home. Though it was a quick stay, it wasn’t an easy one. The majority of my time in the hospital, I was in pain. At times it was excruciating, and I couldn’t help but cry out in agony.

My incisions were not the problem. In fact, though the doctor had to move my stomach, spleen, colon, and other organs out of the way, my insides weren’t even that sore. Gas was the culprit. As is standard in a procedure like mine, they inflate the abdomen with carbon dioxide gas. This allows the surgeons better visibility and to have space to move instruments around. Once surgery is complete, they deflate the abdomen and close the incisions up. Sometimes, not all of the gas is removed. In my case, gas was trapped in my diaphragm, unbeknownst to the medical team. When I woke up, I was in immense shoulder pain. Both of my shoulders felt dislocated and I was entirely confused. What was wrong with my shoulders? Why were they screaming in pain?

During the first night after surgery, I woke up quite loudly. Typically, I internalize pain and am able to breathe through even the most intense discomfort. This pain, however, was on a different level, and I could not contain my screaming like a banshee cries. My husband immediately jolted awake and ran out of the room to grab nurses, doctors, residents… heck, I don’t doubt he would have grabbed the janitor. He was desperate to find someone to help me. To be quite honest, I thought I had a blood clot in my lung. These are extremely dangerous and often can be fatal if not tended to. My right ribcage and shoulder felt as though a fist was trying to push through from the inside out; As though they would explode any minute. It was pain that I had similarly experienced with my first surgery. However, this gas would not be able to naturally escape. It was up high and would not be heading towards an exit. My body had to absorb it over time. The nurses and doctors, (and quite possibly the janitor) ran in and quickly tended to my ailment. Before I knew it, more pain meds began trickling through my IV. Slowly but surely I felt by body relaxing and the pain quieting. I was able to sleep that night, and felt well enough to be discharged the next day.

Once home, I rested peacefully in my own bed. With a memory foam topper, marshmallow-like mattress pad, and divinely fluffy pillows, I didn’t want to be anywhere else. Within two days, I received a call from my doctor. After surgery, as usual, my tumor was turned over to pathology where it would be tested to determine if it was malignant or benign. My doctor called with the news. It was not the news we were desperately hoping and praying for. The tumor was malignant. Neuroendocrine cancer has recurred once again. For a fourth time to be exact… but who’s counting?

I can’t begin to describe the rush of emotions that both my husband and I experience upon receiving this type of news. Though it’s our fourth time learning that cancer has invaded my body, it never gets easier. With my husband at work, and I, alone at home with our dogs, I cried out to God. “Lord, you have to protect me. I can’t keep doing this! Please heal me here on Earth. I’m not ready to die.” Once I told Matt the news, he left work early and came home. Together, we sat on the floor of our bathroom and cried. We prayed and pleaded with God to rid my body of cancer. We prayed for strength, wisdom, and direction moving forward.

Cancer sucks. And recurrences are worse. A real-life version of the film Groundhog Day. A nightmarish merry go round with zombies and evil clowns. One that slowly comes to a halt, but before stopping to allow me to get off, quickly picks up the pace and continues wildly spinning about. I have zero control; All I can do is hang on and pray that the ride stops eventually. Recurrences are truly what nightmares are made of. Once you’ve had cancer, the fear of the disease returning hides in the darkest part of your mind. Though you may not think about it often, it lurks and appears at the first sight of vulnerability.

The truth is, I’m sick and tired of being sick and tired. I’m ready for this seemingly never-ending chapter with cancer to end. I’m ready to move forward with my life, and for Matt and I to step into the greatness that we believe God has for our future. I’m ready to step out of my role as a cancer patient. I’m ready to be a full-time survivor, with cancer a thing of the past. I’m emotionally exhausted, yet I have to continue if I want to survive. I have no choice. I must fight to gain more time here. If I don’t, my end may arrive sooner. Cancer sucks.

Regardless of how defeated Matt and I may feel, we know that God is not defeated. No matter what the news is, God still holds the entire universe in His hands, and not one speck of our lives is unknown to Him. He knew that we would receive these results. He knew that I had a fourth fight in me. He knows. He believes in me. He believes in my future. He believes that, with His help, I can overcome this. So why shouldn’t I believe the same? We place our complete trust in Him. We know that God has purpose in this recurrence, and we cling to the faith that He is stirring up a story so big, we can’t begin to fathom it.

This may sound weird to you… it sounds weird to me sometimes. It is an honor to have this story. It is an honor to be chosen to fight this battle. It’s an honor to have the platform to share of God’s goodness through the darkest pits of despair. It’s an honor to be a cancer patient, and an even greater honor to be a child of God with the knowledge that I will survive, no matter what.

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Psalm 63:1-4, 7-8 (MSG)

“God—you’re my God! I can’t get enough of you! I’ve worked up such hunger and thirst for God, traveling across dry and weary deserts. So here I am in the place of worship, eyes open, drinking in your strength and glory. In your generous love I am really living at last! My lips brim praises like fountains. I bless you every time I take a breath; My arms wave like banners of praise to you… Because you’ve always stood up for me, I’m free to run and play. I hold on to you for dear life, and you hold me steady as a post.”

Comfort in Unfamiliarity

(Guest post by Matt)

I write this blog post at Stephanie’s request while sitting in a vast expanse of a waiting room. This is not the usual waiting room I write from on surgery days. In fact, this isn’t even the usual hospital that I write from. Today’s surgery is taking place at a different location than the others, because today’s surgery is in a different part of Stephanie’s body.

To catch up those who may not know, Stephanie’s most recent CT scan revealed something on or near her left adrenal gland. This comes after months of thinking we were out of the woods with surgeries. After getting the results, Stephanie and I consulted a friend from our church who is a pediatric urologist. This led us to a referral to another doctor, who is regarded as the top adrenal surgeon in the state of Colorado. After meeting with him, the decision was made to get into the operating room soon to remove whatever this mass is. As I write, Stephanie’s patient number is still green on the board in the waiting room, which means that she is currently in the operating room having it removed.

Another surgery is not what we wanted. It’s not what we expected. Nerves get heightened with each surgery that happens. We are both over it, and we never want to have to step foot in a hospital again. But at the same time, we know that God is still good. We are still believing in miracles. We’re believing that whatever this thing is that is on or around her adrenal is benign. As scary as it is, we still have faith.

One of our friends from church told us something a couple weeks ago that still resonates with me. She said that God has provided a stage through Stephanie’s story and, because of that, people are watching. It’s one thing for the miraculous to happen when no one is paying attention, but it’s quite another for God to show off when people are paying attention. That’s what we are believing. We believe that no matter what happens, God will show up and show off to proclaim His name to people who may not know who He is.

Thank you all for your prayers and encouragement. Keep them coming, because there is power in prayer. We’re believing.

Mark 5:36 (ESV)

“Do not fear, only believe.”

Pruning What Doesn’t Belong

A fourth surgery in less than three years? No problem. In fact, I told my doctor if he needed to cut me open from my shoulders to my knees, I wouldn’t care. Just get the job done. Remove what doesn’t belong.

Last week Matt and I drove to a meeting with our newly appointed team member. A urologist, who happens to be the top adrenal surgeon in the state. He’s one of the many doctors on our team who helps navigate and combat this dreaded thing called cancer. I currently have a gynecologic oncologist, radiation oncologist, general oncologist, and now a urologist, among the slew of techs and nurses helping as well. Adding a new doctor to the team is always met with some hesitancy (on my part), as I become comfortable with those who have treated me over the last couple of years. My team of doctors and I have grown as a family. The hospital where I have received 99.9% of my treatment is a second home.

Adding a new doctor is like welcoming a new in-law to the family. Will I like him/her? Is he/she going to be able to keep pace in our conversations? Can I see myself spending hours and hours with this person? Can I place my trust in this person’s hands? As my medical team has become family, it’s quite entertaining to see what role each of them falls into. The one who is like an aunt whom you can cry and laugh with, and tell your darkest secrets to, all the while feeling great comfort. The epitome of a distant uncle who awkwardly hits it to you straight and leaves you hanging mid-air wondering what he’ll say next. The sister figure who has your best interest in heart, but doesn’t mind telling you the truth when you need to hear it. The cousins who greet you and play catch-up for the mere minutes you have to see them. Every person on our team fills a role in our medical family. Each one serves a purpose and is vital in my fight against cancer.

Though we’ve only met my new doctor once (on our four-year wedding anniversary, might I add), I can confidently say that I trust him. Matt and I both do. He is smart, professional, and compassionate and, after our meeting with him, we are ready to move forward in the next step. As I’ve mentioned HERE, I have a tumor on my left adrenal gland. The CT and PET show “activity” in the mass, however, based on its location, there is not 100% certainty that it is malignant. From what our doctor discussed with us, we know that adrenal masses happen and are often completely benign. Of course, based on my history, we have to be cautious. Caution and cancer go hand in hand.

Upon having our conversation, my doctor, husband, and I decided it’s best to proceed with surgery to remove this unlabeled mass. Usually, there is talk about doing a biopsy whenever a spot shows up on my scan, but it’s quickly ruled out. This time was no different. For a minute we passed over the idea of taking a biopsy of this tumor, but the risk of spreading the cells (cancer or not) is too great. IF it happens to be malignant, we don’t want  it to spread and wreak havoc elsewhere in my body. This is a disease you don’t want to piss off. Therefore, I’m going under the knife once again.

This will be my fourth major surgery since diagnosis. At this point, I like to consider myself a professional. I’m not concerned. In fact, I would rather be cut open to remove the entirety of the unknown intruder cells as opposed to just peeking through the door, taking a piece, and testing them. My scan is showing something that shouldn’t be there, and although it may not even be cancerous, I don’t like things where they don’t belong.

Pruning is a must in all areas of our existence. While I have undergone surgery to remove malignant masses in my body, likewise I have undergone metaphorical surgery to remove toxicity out of my life. We often hear certain things being compared to cancer. “He is a cancer in the group. He pulls everyone down with him.” Nothing about cancer has a positive connotation. It is the worst of the worst. It will destroy you from the inside out. Ridding ourselves of cancer and its metaphorical meaning is vital to live a healthy life. We prune gardens, cutting back the weeds to allow flowers to blossom, and likewise we should be pruning our lives.

Is there an area of your life that is so full of weeds, it’s taking over your world? Are the weeds drowning out who you really are? Have you ignored the weeds, hoping that they’ll go away on their own? We must cut back what doesn’t belong and rid ourselves of what shouldn’t take residence in our lives. It could be a toxic relationship, hidden addiction, or unhealthy patterns. We all have areas that need to be pruned.

Just as surgery hurts, pruning hurts as well. Removing what doesn’t belong will cause pain, and that’s often why many people avoid it. But once the weeds are removed, the blossoms can thrive. Though we are believing this mass is not cancer, it still doesn’t belong. Therefore, this coming Monday (6/16), Matt and I will venture into the hospital once more to do some pruning. The doctor believes he can perform the surgery laparoscopically. If this is the case, my recovery will be much easier. We are confident in this process, and are expecting wonderful results.

Please be praying for myself, Matt, and our newly added team of medical staff. While I receive all of the fun parts of surgery (sedation, pain medication, and doting nurses), Matt sits in the wings for hours awaiting the results.

While we prepare for pruning, ask yourself what needs to be pruned in your life?

pruning quote for DMD

John 15:2 (ESV)

“Every branch in me that does not bear fruit he takes away, and every branch that does bear fruit he prunes, that it may bear more fruit.”

 

 

Caregiving: A Perspective From Both Sides of The Coin

(As featured on Cancer Knowledge Network)

Most of you know me as the writer in our family. Little do you know, my husband is talented in written form as well. Recently, Matt and I were asked to co-write an article for a Canadian publication. We were invited to share our perspectives on caregiving and the vital role it plays in one’s journey through cancer. I was, and still am amazed at my husband’s words. They have touched my soul, just as I know they will yours…

Stephanie (Survivor):

A cancer diagnosis never affects just the person afflicted with the disease. Though the doctor found a malignant tumor growing inside of me, she might as well have told my husband that he had one growing inside of him as well.

In June of 2010, I walked down the red-carpeted aisle of an old, spacious, and magnificent cathedral to marry my best friend. From our second date, I knew he was the one I would spend the rest of my life with. We shared laughter, adventure, and innumerable conversations. He stole my heart and has protected it from the moment it entered his grasp. Within weeks of meeting each other, we fell in love and began planning our future – when we would have children, where we would live and raise our family, even the color of paint we would choose for the walls of our dream home. We had life figured out and were valiantly prepared to take on the world together, hand in hand.

One and a half years later our plans were derailed. At the age of 25, I was diagnosed with a rare and aggressive form of cancer. It was as if the canvas we had sketched our dreams on was wiped clean. The plans we had set forth were redefined and put on hold. We soon entered into the gates of Cancerland and were quickly thrust into an unknown arena. Decisions had to be made, and treatment began immediately.

Through multiple surgeries and treatments, recurrences, and cancer-free scans, my husband has stood firmly by my side in every moment. He has courageously taken the role as my caregiver, and has sacrificially offered to help with my countless needs. Not many realize that I am not the only one in this fight. My husband is firmly planted next to me on the front lines. When I rested in hospital recliners receiving treatments, Matt sat on the uncomfortable chairs beside me without complaint. When I was weak and pitifully sick, he would assure me and rub my back in comfort. When I had moments of depression and couldn’t battle fearful thoughts, he would encourage and pray for me. He shaved his head when I lost my hair so I wouldn’t feel alone. At my weakest, my husband mustered up strength and bravery to help me through. All without second guessing or complaint.

I’ve often shared that the role of a caregiver is equally as important as the patient fighting cancer. Though I was the one ingesting toxins to battle the disease within me, my husband fought just as hard behind the scenes, making sure I could withstand the fight. He has sacrificed so much just to care for me. His patience, concern, encouragement, compassion, and love have altered the way I fight cancer. I am stronger with him beside me.

He is my guardian. We fight this disease together.

Matt (Caregiver):

Have you ever seen the movie The Bodyguard?

Kevin Costner is a total badass in that movie. I watched it a lot when I was a kid. He ran around, protecting Whitney Houston from stalkers and bullets. He was a hero. I wanted to be a hero.

I can’t say I was fully prepared when my life started to parallel that story. My wife was diagnosed with a rare and aggressive form of cancer over two years ago. When we got the news, I knew that the roller coaster ride would soon commence. Life would never be what it once was, nor would it play out in the way I had intended. Instead of buying a house, a car, and having kids, we would be shuttling off to surgeries, chemotherapy treatments and radiation appointments, all the while keeping track of our mileage in hopes of writing the expense off on our taxes.

Let’s face it; in reality, I’m not fending off over-obsessed fans or valiantly diving in front of bullets (thank the Lord). My role is more concealed. Instead of being front and center, I’m like the Kevin Costner waiting in the wings, keeping an ever-watchful eye on everything that’s going on. And unlike Kevin Costner, there’s not a whole lot I could do except be there. I can’t make the disease go away. I can pray, and I can be there whenever my wife needs me. When my wife was sick in the middle of the night, I was awake with her. When she was too weak to get out of bed on her own strength, I helped her up. When all she could or wanted to do was lay on the couch, that’s all I did, too. I instantly became a professional chauffeur, personal assistant, and expert dog taker-outer. If I wasn’t at home or at the hospital, I was at the pharmacy, standing off to the side while the staff gathered up the hundreds of dollars worth of home injections and pills that I didn’t have the capacity to afford. As a caregiver, you do whatever it takes.

In those times, I’d often think back to the day I married Stephanie. “For richer or poorer… In sickness and in health.”

So this is what that meant. This is what I meant.

Being a caregiver is not a glamorous gig. As a caregiver, you hold down the fort. Your partner is down, and it’s all on you now: the house, the kids (or, in our case, the dogs), the money, the bills, making sure your family is fed, that they have a roof over their heads, clothes on their backs… and the whole “giving care” part. That’s your job now. Your job is no longer just your job. You will lose sleep. You will not be able to do some of the things you used to enjoy. You will sacrifice your own health to ensure the health of your loved one. And you will need never-ending amounts of grace and forgiveness.

You will do all of this, and you will likely not be recognized for any of it. You will feel left out. You’re in the wings, remember? When things go bad, prayers and support are 99.9% directed at your loved one. When things go well, congratulations and well-wishes will also be 99.9% directed at your loved one.

You’re the unsung hero, the bodyguard. Stay out of the way and save the day.

Often times, my wife gets told that she is someone’s hero. Nearly every day, she hears that from someone. People lavish her with praise, saying she inspires them. They want to make sure that Stephanie knows how much she means to them.

For me, my wife is the one telling me that I’m her hero. When she is everyone else’s hero, I’m hers. She sees what I do, the sacrifices I’ve made to make her as comfortable as possible as she fights the hardest fight of her life. She appreciates me. That’s awesome. That being said, if you know someone who is a caregiver, tell them how you feel about them. Do you appreciate them? Tell them. It’s amazing what encouragement can do. For every person you know who is faced with cancer or some other life-altering affliction, there is also someone in their corner who, if you’re honest with yourself, you likely have never noticed.

No one is meant to fight alone.

Philippians 2:4 (ESV)

“Let each of you look not only to his own interests, but also to the interests of others.”

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Complicated Results and Abundant Faith

It’s that time of the year again. My three month follow up scan has arrived. If you follow me on Instagram, Facebook, or Twitter, you know that I laid on the hard, metal table one week ago. The results are in…

There’s a spot on my left adrenal gland.

Before you begin jumping to conclusions, let me explain. We aren’t positive that this lesion is even cancer. This is a spot that has lit up on the last few of my scans, and first made it’s appearance in October. Since then, I’ve had several rounds of chemotherapy. Throughout it all, this unknown mass has remained. It has grown slightly in size over the last seven months, but doesn’t seem to be affecting my body’s function.

When I was first told of the news, I didn’t even know what an adrenal gland was. One of our close friends is a doctor in this field and was able to explain to us in non-medical terms what we were dealing with. The adrenal gland is essentially a hat on top of the kidney. It’s purpose is to produce hormones such as stress and adrenaline. Each kidney gets it’s own adrenal gland, so, naturally we all have two. This lesion could potentially be one of three things.

  1. A benign non-functioning tumor. In which case, it’s a mass that serves no purpose and isn’t affecting my adrenal function.
  2. A benign functioning tumor. This is a tumor that is releasing it’s own hormones like stress and adrenaline.
  3. A malignant tumor. Also known as, cancer.

Of course, we won’t definitively know what this spot is until it is biopsied and sent to a pathologist. However, based on my history in Cancerland, we can conjure up an idea of what it may or may not be. Most likely we can rule out it being a benign functioning tumor. If this were the case, I would be experiencing symptoms like heart racing and bloodshot eyes, which I’m not. It would be obvious if this mass was functioning on it’s own, and from what we can see, it’s not doing much.

There is a chance that this could be another recurrence. However, taking my history of malignancies into account, although this lesion has grown, it has not increased as rapidly as my other recurrent tumors. If you recall, my first recurrence was a softball-sized tumor that developed within three months. That mass grew rapidly and aggressively and even began affecting my hormonal functions. In addition to the difference in growth, my body has proven to respond very well to chemotherapy. If this were a malignancy it would be quizzical to have had no response to treatment. For these reasons and more, we believe this is not a malignant tumor.

This leaves the possibility of it being a simple mass that serves no purpose other than to annoy us by showing up around my left kidney. A little pest that has chosen to, for whatever reason, hang out on my adrenal gland. Matt and I strongly believe that a non-functioning tumor is what’s lurking inside of me.

We have abundant faith that this is not cancer.

Arguments can be made for both sides — malignant and benign. Yes, based on these last two years, an unknown mass can lead many to immediately think cancer. However, just as likely, it could be something completely unrelated. Not everything inside of me has to be marked by this disease.

Regardless of what this lesion is, it will need to be removed. Cancer or not, I don’t need something harassing my adrenal gland. Therefore, I will have surgery at some point. Honestly, I am not fazed in the slightest. I’ve already been through three major surgeries in the last couple of years. I’m familiar with the process and recovery. I know all too well about the discomfort and pain. Surgery no longer scares me. I trust that God has my life in His hands; Just as He orchestrated what has been, He orchestrates what will be.

This morning I venture back into the hospital to lay on another hard table while a loud spinning machine takes several images of my insides. This scan will be a full body PET scan and will show all of my internal organs, including my brain. Compared to the CT scans that I receive every three months, a PET goes deeper in it’s imaging and is far more comprehensive. We may or may not learn more information from this scan. This step is necessary to make sure there are no other masses growing elsewhere in my body.

Next week a new doctor will be added to our team, and we will meet with him to discuss surgery. He will go over the hundreds of documents that have chronicled my medical journey and review each scan image that has been taken. He officially has a new patient that comes baring a lot of medical baggage, and it’ll be interesting to hear his opinion on my case.

For now, we hope and pray. As I mentioned, Matt and I are not fearful, but full of abundant faith. We aren’t anxious, nervous, or even the slightest bit afraid. Standing in faith, we believe this growing lesion is not cancer. We believe that I am still cancer free and will remain so for the rest of my life. We believe that the chapter of cancer has closed and we are entering in to the next season of our lives. We are not only believing, but declaring this. God is so mighty in His power, we are calling upon Him to perform a miracle. He beckons us to have faith, to knock so He can answer, and to trust in Him. Therefore, while believing and trusting in Him, we are asking that this mass that has shown itself on my scans for seven months, will not appear on my PET scan. We are praying that whatever this spot is, will vanish. I actually laugh as I pray, because I can picture my team of doctors jaw-dropped as they read the report and view the images, and see the once 2.6cm mass completely gone.

So, while I don’t have the best news to share, I don’t have the worst news either. The results from my CT scan are merely a speed bump on the journey. This is a moment that the enemy is attempting to lead us to question God. I know he is asking us, “Are you sure you’re healed?” He wants to lead us down the path of emotional and spiritual destruction, but we stand against it. We aren’t entertaining the thoughts and fears that try to creep in. We won’t open a door until God tells us to. For now, we are firm in our faith, and believe in healing. We ask that you would stand with us and believe for a cancer free report.

Luke 8:50 (ESV)

“But Jesus on hearing this answered him, ‘Do not fear; only believe, and she will be well.'”

A Big Thank You

Every week I receive emails from readers sharing how I’ve helped them through their own journeys. Readers that tell me how inspiring, raw, authentic, and brave I am to share my story so openly. Men and women alike express to me their own struggles, spurred on by the openness in mine. Emails stating my writing is unique, clear, true, and often humorous. With every one of these emails, letters, comments, and notes, I am amazed… and grateful.

I’ve always been a writer. Not paid. Not professionally. In fact, I didn’t even go to school for writing. From my adolescent years, I’ve always kept journals — Jotting down my thoughts and emotions as a way to express my life. I’d pass notes in school to dear friends, pour out my teenage heart in puppy-love letters to old high school boyfriends, and send apology notes to my parents in attempts to say, “I’m sorry.” As my husband and I started dating, I kept a journal specifically for him, sharing my dreams and goals for our future. On our wedding day, I gave him this journal and invited him to begin writing our story with me. Writing has been buried within my soul long before I can remember.

A word is the deepest, most powerful and expressive way to convey thought. Words can inspire and help, or hurt and destroy. Words are a delicate tool that we have been gifted, and heed should be taken when using them.

As I’ve grown, writing has presented itself boldly on the forefront of my life. Upon diagnosis, I was called so strongly to share my journey that I don’t think I could have chosen not to. I was meant to write. At the time, I had no understanding of why. No reasons for sharing my little journey through life and cancer. No idea of what publicizing this story would do for me and for others. I obeyed that calling, if only for the fact that I could update friends and family on the latest additions in my treatment. After all, writing on a public blog was significantly easier than spending six hours on the phone like I did the day I was diagnosed.

Little did I know what was to come from an act of obedience. While it’s been natural for me to express my heart in words, it hasn’t always been easy sharing my largest struggle publicly. There have been times when I didn’t feel comfortable sharing how sick I felt. Times when I was fearful of what my readers would think of me if I told them I felt defeated. Moments of uncertainty in sharing my heart on the loss of my fertility. Moments when I didn’t want to write about cancer at all. And great sadness as I’ve had to share of my past recurrences with this dreaded disease. Yet, no matter how hard it has been, it’s been equally as rewarding.

… Because of you, the reader. My support team. The ones who have followed my journey from the beginning and have trusted my process. Those of you who have rallied around me, encouraging me from miles away. Those of you who have cried in your homes for me and for the many others fighting cancer. Those of you who have held my hand and prayed fervently for my healing. The many that I have yet to meet, who are actively standing and believing alongside me. And those who are fighting a battle similar to mine, sharing your stories with me through emails.

Thank you.

Not one of your comments, emails, notes, and even tweets go unnoticed. I read every single one, and try my hardest to respond to them all. I am touched that you take the time out of your busy lives to stop and read my words. To check in with me and see how I’m doing. To pray and encourage me through the high and low points. To notice my husband who is fighting equally as hard beside me. I am humbled that you would find interest in my story, in my process, and in my journey.

Of the hundreds of emails I receive, there are quite a few that stand out and affirm my decision for being so open. A man in Germany explained that he has never been able to put into words what he felt through treatment until he read my posts. A woman who has been struggling with the loss of her daughter finds encouragement through what I write about. A man once shared with me that after the tragic and unexpected passing of his loved one, he physically hadn’t been able to get off the couch until he read my story. Parents have written to me expressing their loss of a child. Women share feelings about their own loss of fertility, and the encouragement and camaraderie that my raw emotions gave them. Many express that, through the words of this blog, they have found their strength and identity in who they are beyond cancer.

Hearing that my willingness to be open about my fight with cancer is encouraging people from across the world, inspires me greatly. The encouragement you receive from me is equally received by me from you. When you write and share what you have learned through your own story, you bless me. When you tell me that you are encouraged to be more than just another statistic, you bless me. When you stand in agreement and believe with me that your diagnosis does not define you, you bless me. When you read my story and keep up with the latest twist in my roller coaster of life, you bless me. When you share my story with your friend or family who is struggling, you bless me. When you celebrate with me in the great times, and weep with me in the dark times, you bless me.

Thank you for following my story, and for inviting me into your homes through your TVs, computers, and radios. Thank you for being patient and understanding of me when I pour out the hidden places of my heart. Thank you for rallying beside my husband and I as we enter into new seasons in life.

Thank you. I look forward to what’s to come!

DMD Thank You

1 Thessalonians 5:11 (MSG)

“So speak encouraging words to one another. Build up hope so you’ll all be together in this, no one left out, no one left behind. I know you’re already doing this; just keep on doing it.”

The Shadow of Cancer

Cancer has the potential to affect every detail in my life. It can sink into the nooks and crannies, and infiltrate the depths of my existence. It can wedge itself where it doesn’t belong. Cancer is capable of lurking in the very DNA of my own shadow.

Before this disease, I was fairly carefree. Decisions were made based on what my husband and I felt was best for our lives. While living within the “God filter,” there were no other major factors to be taken into consideration. After all, we were young and healthy. It was (at the time) just the three of us: Matt and I, and our pup, Scout. I chuckle as I recall our main concern being who would take care of our dog when we went out of town. Or saving up enough money to spend on Matt’s annual eye appointment and subsequent contacts and eyeglasses purchase. Oh, the simple life.

Upon entering the gates of Cancerland, every thought, decision, and action was then funneled through an additional filter. Cancer. Could I get on an airplane to see my brother graduate college? Only if my white blood cells were high enough to withstand the amount of germs in the air from strangers around me. Could I go on a date with my husband? Only if I was feeling well enough to leave the house, and that was usually not until the second week after a chemotherapy treatment. Could I take a hot shower? Only if I wanted my skin to fall off. (Remember my Hand and Foot Syndrome?) Could I skip some medication? Not unless I wanted to spend hours heaving pathetically over the toilet.

Friends and family soon became aware that any plan we made was only tentative and not set-in-stone. I cancelled on more people than I care to admit. If only it was because I didn’t want to hang out with them. Unfortunately, it was my cancer shadow. The one that followed me everywhere, and still tries to make an appearance on my life as a survivor. Plans were changed, relationships faltered, and life got complicated. With every decision, cancer had to be acknowledged. I couldn’t live carefree. It was no longer just our little family of three. We soon were filtering our lives through the cancer sieve.

Personal and intimate details of our lives weren’t even safe against the shadow. When will we have children? It depends on how long I am cancer free. How will we have children? Unless by immaculate conception, it would be impossible to carry a child with no lady parts. Should we purchase a house? Only if we are willing to take the risk of a recurrence, leaving us unable to pay for said home. Will I have hair by the time I’m a bridesmaid in one of my best friend’s wedding? Depends on how long I’ve been out of chemo.

Nothing was free from the looming dark shadow of cancer. Not even my mind. When I was first diagnosed, I became hypersensitive to the words, “death,” “die,” and “kill.” Hearing, “I would kill for a fill in the blank,” would leave me emotionally reeling. Or, “I could curl up and die,” would often leave my eyes pooled with tears. “I feel like death,” would send me straight to thoughts of my own demise. I would change the TV channel, listen to a different song, or politely excuse myself from a conversation if such words were spoken in my presence. Receiving news about a loved one passing away would instantaneously cause me anxiety and fear. Was I afraid of death per say? No; I know where I’m going. However, I surely didn’t want anything to do with dying just yet.

The shadow of cancer lurks in every vulnerable place of my mind. It’s hiding behind moments of greatness, waiting for me to slip up and fall. It’s whispering and teasing me and attempting to remind me that I can not forget about it. Just like cancer, its shadow is equally as damaging. It takes all that’s within me and more to stop the acknowledgment of my cancer shadow. Cancer doesn’t define me and, though it’s been a large part of my life, it’s not who I am.

We all have shadows. Shadows of our past. Shadows of shame and regret. Shadows of missed opportunities, closed doors, and misfortune. None of us are exempt from having a shadow. Too often many of us are consistently looking at our shadow, as if it’s going to change. We can’t erase what’s done, but we can walk with our eyes forward. Rather than screening our decisions and actions through our past filters, let’s instead push everything through our God filters. Our past comes and goes, but God is never-changing.

What is your shadow? What filter are you living through?

Philippians 4:8 (ESV)

“…Whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.”

Dream to Reality: Chatting with Ellen DeGeneres

A dream was birthed from the conception of my diagnosis. I had a far-fetched aspiration to go to The Ellen DeGeneres Show. Never once did I think this dream would become a reality. In fact, had you told me that my name would be spoken by the woman herself, I would have probably laughed at you. Sitting next to Ellen and having a conversation with her? Ya right. Out of the millions of viewers that tune into her show daily, who was I to stand out in the sea of inspirational stories?

I have tuned in to The Ellen DeGeneres Show for years. Her candid humor, contagious spirit, and positive message are infectious. She offers uplifting perspective, guttural laughter, and the latest updates on celebrity news. Her generous nature is apparent on every show, as she honors a wide array of everyday heroes. Never once have I watched an episode that I haven’t both laughed and cried in. She’s that good. Throughout my seasons of cancer treatments, Ellen DeGeneres has always been a ray of sunshine in the midst of my dark days. No matter how sick, gross, or pathetic I felt, her show was the perfect remedy. Laughter truly is the best medicine, and Ellen has a doctorate in spreading happiness.

I do not enter contests. I have never won anything. I’ve purchased two lottery tickets in my life and was unsuccessful. However, a few months ago, I serendipitously came across a CoverGirl contest that The Ellen DeGeneres Show was hosting. Ellen herself is an Easy, Breezy, Beautiful CoverGirl and the two joined hands in the recent #bombshelling movement. Among the many variations of the term, bombshelling simply means, “the act of being a bombshell; embracing your inner diva.” The contest invited people to share a selfie and their own inspirational story.

The selfie I sent in to The Ellen Show Without a second thought, I quickly snapped a photo of myself. No wig; Bald in all it’s glory. Light makeup, and a cute chevron scarf. I then drafted a summary of my adventures and lessons through cancer and submitted my entry. Not thinking twice. Quite skeptical in fact, I figured I would never hear back. I don’t win anything, after all. My husband, Matt arrived home from work, and I nonchalantly mentioned that my entry was forging its way among the thousands of others. His response was far from noteworthy, and my news didn’t evoke more than a shoulder shrug. He was all too familiar with my contest history, or lack thereof.

We continued our daily life, and I didn’t give the CoverGirl bombshelling contest much thought. Months later, to my complete and utter shock, I received a phone call from the show. They had sifted through entries and wanted to hear more about my story. At the moment, I couldn’t believe it was happening. A few phone conversations later, and we were invited to sit in the audience at one of Ellen’s tapings. The smile cemented on my face stretched from ear to ear. I could not contain my excitement. Matt and I were elated. My dream was coming true! Ellen Artist Entry Before we knew it, the whirlwind of anticipation and enthusiasm had swept us up and we were walking through the doors of The Ellen Show studio. I felt like a kid in a candy store — grinning and giggling as I was unsure of what to look at, what to take in, and in awe at the wonders of the studio itself. Matt and I found our seats and with the rest of the audience on all sides, were welcomed into a massive dance party. If you have watched Ellen, you know that her show is widely centered around dancing. She moves and grooves. The audience gets jiggy wit’ it. Her guests bust a move. It’s a party, and no one is left out. Halfway through the show, my cheeks were in full-on workout mode from the smile that remained plastered on my face. The energy of being in a studio, clapping, dancing, and laughing with hundreds of others is unparalleled. Happiness was spread like wildfire.

Just as the last segment was underway, Ellen began sharing that she was a CoverGirl. At that point, I firmly grabbed Matt’s leg, and I’m sure my eyes grew twice their original size. With the next blink of my eyelids, a familiar photo was displayed on the back screen. A bald woman, with light makeup and a chevron scarf. Wait, What? I think that’s me. Oh, yes. That’s definitely me. Time jolted forward faster than the speed of light. I heard my name. I heard Ellen say my name. She wanted me to come down to the stage. Is this a joke? Is this real life? Surprisingly, I made it down the steps and onto the stage without tripping and embarrassing myself. I wasn’t however, free from the sight of the camera catching my ugly cry.

After hugging Ellen (yes, I hugged Ellen DeGeneres!), I sat down and chatted with her. The cameras captured my fairly composed responses to her questions, though inside I was a deer in the headlights. We’ve all experienced moments where our dream transforms into a reality, and this was mine. As if having a conversation with Ellen wasn’t enough, she surprised me with a check on behalf of CoverGirl to the tune of ten thousand dollars. At that point, I was astonished, amazed, and flabbergasted. Meeting Ellen DeGeneres, hugging, laughing, and sharing conversation with her would have been enough. However, in true “Ellen style,” she and CoverGirl so generously gifted Matt and I an amount that will help chip away the medical debt that has been accrued from such an arduous journey these past two years.

Copyright: The Ellen DeGeneres Show

Copyright: The Ellen DeGeneres Show

Gratitude doesn’t articulate the depth of thankfulness that my husband and I have experienced. As I stated in an after-show interview, there would never be enough “Thank You’s” to Ellen and CoverGirl for the gift and opportunity they have given me. To be recognized for my message that bald is beautiful is an overwhelming honor. We will forever be grateful for what Ellen and CoverGirl have done for our family.

The response from our surprise on The Ellen DeGeneres Show has been incredible and humbling. The posts on Ellen’s Facebook page and Instagram have received over 90,000 “likes,” and hundreds of comments. What has inspired and humbled me the most are the women who are posting pictures of themselves without wigs on in the comments. To know that my story is touching so many others, is breathtaking. It makes my fight worth it. Thank you all for tuning in and sharing such an exciting moment with us.

Dreams do come true.

CoverGirl Bombshell Shows that Bald is Beautiful
on Yahoo! Shine

Philippians 4:19 (MSG)

“You can be sure that God will take care of everything you need, his generosity exceeding even yours in the glory that pours from Jesus.”

Badge of Honor

_MG_8052Losing hair in an already difficult situation is like rubbing salt in an open wound. As if struggling to survive each day through treatments, medications, and poisonous elixirs isn’t enough, going through it bald is the proverbial cherry on top.

_MG_8040When I first lost my hair, I was unsure about venturing out into the public without something covering my smooth, hairless scalp. I remember the first time I stepped out of the house sporting my new look. As freeing as it felt, I also noticed the amount of unwanted stares I began to receive. The questions, curiosities, and expressions of pity in the eyes of strangers were tangible. I felt uncomfortable and embarrassed, but most of all, I was vulnerable. At times I wanted to boldly announce, “I have cancer, alright? Stop staring at me!”

_MG_8089I’ve been baldalicious for the greater part of two years, and have now learned to view it differently than I did in the beginning. My perspective has changed and a pride has emerged in the once desolate space of vulnerability. I am proud to be bald because being bald means I am a survivor. Being bald means I am still here. Still fighting. Still alive! Instead of viewing myself as a patient, I view myself as a strong warrior. Now, when out in public without a wig, I walk with my head high. I have nothing to be embarrassed about. Nothing to hide.

_MG_9187One month after my final chemotherapy treatment, I developed a longing to document my beautiful baldness. As illustrated as my journey has been, there was one thing missing — a gallery highlighting my bald head. I wanted my badge of honor on display, in a way that highlighted the fierce survivorship that I so often feel.

_MG_8133As usual, God’s timing is always perfect; Recently I was invited to be the subject in a photo shoot. After discussing my vision for the session, Kimberly met my husband and I at a park and we got to work. I was inspired to showcase the beauty in baldness, and brought along a headpiece that I put together. This photo shoot was such a special, intimate, and celebratory moment in time. Kimberly is a phenomenal photographer, warm and friendly face, and develops an atmosphere of comfort that is so needed in a shoot like this one. What she produced stunned me. She captured my vision to a “t,” and I will forever be grateful to have visual representations of the beauty in my baldness. I hope you enjoy them as much as I do.

_MG_9208Bald should be celebrated, not hidden away in embarrassment. If you are bald from the effects of your courageous fight through cancer, embrace it! It is your badge of honor. You are beautiful! After all, we are survivors … our bald heads say so.

_MG_8101

Isaiah 12:5 (MSG)

“Sing praise-songs to God. He’s done it all! Let the whole earth know what he’s done!”

PHOTO CREDIT: KIMBERLY MITISKA PHOTOGRAPHY

 

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