Posts Tagged ‘Neuro Endocrine’

Raising The White Flag

8449255980_9d7c817f2c_z

There are moments when we reach the end of our rope. When no matter how hard we try to hold the pieces in place, everything continues to slip out of our grasp. When we desperately wish for things to go according to plan, just this one time. When we are this close to throwing in the towel.

We don’t realize that in those moments, all we need to do is surrender. Place our pieces on the table, push them over to God, and raise our white flag.

Surrendering is typically the hardest obstacle we face in life. Why is that? Why do we find it so hard to let go of control? Surrendering is not giving up. Surrendering is not admitting defeat. Surrendering is the strongest act of humility and trust. Surrendering is an acknowledgement that we can no longer do it on our own. To surrender is to gain.

Life with cancer has taught me to raise my white flag more often.

I’ve been MIA these past few weeks, and I’d be lying if I said I wasn’t going through something. I was reaching the end of my rope. I was desperately grasping for straws. I was tired, unsure, stressed out, and frustrated. Sometimes I feel like my life is a bulbous onion. Layers and layers piled on top of one another. Each layer a new level made up of the stuff that makes your eyes water. Often too, I feel like a circus performer, trying to balance an innumerable amount of barrels on my head while walking across a tight rope.

We all have periods in our lives when we’re juggling too much already, only to have a few more balls get thrown into the mix, causing all of them to come tumbling down.

My car needed a repair. A repair that would cost us more than the value of the car itself. The only wise decision my husband and I could make was to purchase a new (used) vehicle. Our current lease was up soon, and we had been looking for a rental home for months. Each day we sat in front of the computer, scanning every place we could think of for used cars and rental homes. Nothing. Nothing in our price range. Nothing in our location. Too much mileage. Too expensive. Too much. Too little. Too far. Nothing. I felt defeated. I felt like we would never find what we needed. And amidst the stress of determining our next steps, my dear grandfather passed away. He fought a courageous battle against this disease, and ultimately won. Oh, and my weekly chemotherapy treatments… the cherry on top.

Stress, frustration, exhaustion, and grief all wrapped up into a tear-filled, multilayered onion.

I found myself in the shower one day — naked, alone, and vulnerable. I began to weep. Tears cascaded down my cheeks and spiraled down the drain alongside the water. My pent-up emotions heaved from my heart as I lamented my anguish. Soon, a song began to rise within my spirit. Bubbling up, forcing it’s way through my emotions, and cleansing them upon release.

“I surrender all. I surrender all. All to thee my loving Savior, I surrender all…”

The words flowed out and my arms raised up. In my weakness and vulnerability, I began to worship. God Himself gently placed this hymn that I had not sung for years in my spirit. He was urging me to let go. To give Him my checklist, my worries, and my grief. And in that moment, I did. Before I knew it, the burden was lifted off and I was in complete peace over what my husband and I were facing. The feeling you get when someone you love gives you a great big hug… that’s what happened. Tears of stress transformed into tears of joy and hope.

As if God was saying, “You can’t do this, but I can. Give these tasks to me. I’ll take care of you.” Within one week, we found a car and a home. Upon my surrender, He was faithful.

Have you experienced something similar? I have, many times. Yet in those dark moments, it’s easy to forget His faithfulness. It’s easy to doubt His ability. In our humanness, we believe that we are in control. We think that if we don’t do enough nothing with happen, or if we do, we’ll reap favor. Too often, we lose sight of The One who is ultimately sovereign over our lives. No amount of us “doing” can achieve what He can. We cannot achieve our impossibles. Only God can. And, in order for this to happen, we must surrender our pieces to Him.

Surrendering is scary. Full surrender is handing both your worries and fears as well as your dreams and desires completely over to Jesus. It’s entrusting Him to handle it. It’s relinquishing control over your life. Surrendering is hard, but necessary. After all, His abilities far outweigh our own. Surrendering comes down to trust. Do we trust God?

What do you need to surrender today? I challenge you to raise your white flag.

Mark 14:35-36 (ESV)

“And going a little farther, he fell on the ground and prayed that, if it were possible, the hour might pass from him. And he said, ‘Abba, Father, all things are possible for you. Remove this cup from me. Yet not what I will, but what you will.’”

Photo: Flickr/lundgrenphotography 

“Hi Stephanie, This is Peyton Manning.”

peyton

The Sheriff. 18. PFM.

Peyton Freakin’ Manning.

The Denver Broncos quarterback is referred to by many nicknames. However, after Saturday afternoon, I’d primarily refer to him as genuine, kind, and authentic.

There have been many moments of incredible blessing in my fight against cancer. Abundant and overwhelming amounts of gifts, kind words, and support. The platform to meet with others and share my story. Innumerable opportunities for writing and motivating. Open doors I would have not experienced without this disease barging into my life. Though cancer has brought tremendous grief and loss, it’s also brought with it a wave of encouraging gifts and bright rays of hope.

Through my journey, I have been stripped raw of my previous notions about life. Cancer tends to do that — quickly sloughing off areas that don’t really matter. It cuts down to the marrow and brings an awareness of who we should be and how we should respond to those around us. What car we drive, what house we live in, and how much money we make is trivial in the grand scheme of things. Life is about relationships. Life is about compassion towards each other. Life is about finding joy no matter the circumstance. Life is about uncovering hope and sharing it with those around us.

On Saturday, Matt and I spent time with family. Catching up with his dad and grandparents, chatting about my upcoming season of treatment, and sharing laughter as usual. I’m blessed by his family, and from the moment he brought me home to meet them, they welcomed me with open arms. When I was diagnosed nearly three years ago, they wept with us. They rallied around us and have fervently prayed alongside us for my healing. His grandparents are some of the sweetest people I have ever met. His grandfather, a ninety year old World War II veteran, shared his excitement about his upcoming “honor flight” to visit the memorials in Washington DC. Matt’s grandmother told us how she loves her new iPad and enjoys playing Candy Crush and keeping up to date with her grandkids through Facebook.

Soon, we said goodbye and began the trek back home. Barely ten minutes into the drive, my phone began to ring. Immediately, “No Caller ID” appeared on the screen, and I was left wondering who was on the other end. Considering our adventures through medical bills, I tend to assume it’s someone asking for our money. I answered, “Hi, this is Stephanie,” and was shocked at the voice I heard in response.

“Hi Stephanie, this is Peyton Manning.”

The steady southern drawl behind the five-time NFL MVP and Super Bowl champion was saying my name. Peyton Manning was calling me on my cell phone. Believe me, I’m still in shock. In utter amazement, I asked, “Are you for real!?” only to be answered with a polite, “Yes, it’s Peyton.” Peyton… THE Peyton. Manning. Peyton Freakin’ Manning. Oh my word. My Denver Broncos quarterback was talking to me. He went on to explain that my husband had written him a letter sharing my story and that he wanted to personally reach out to to tell me that he was praying for me and cheering me on. We spoke for a while. He asked about my upcoming treatment, sharing well wishes and telling me to continue to fight strong. He was so nice. Yet nice doesn’t fully describe him. Invested. Peyton was invested in my story, and was genuinely interested in knowing how I was doing.

The conversation came to a close, as the team was heading to San Francisco for the upcoming pre-season game against the 49ers. I thanked Mr. Manning for taking time out of his busy schedule to call me. We said goodbye and hung up. Then, I screamed. I stared at my husband wide-eyed, with the largest grin plastered on my face. I could not believe that Matt had written Peyton Manning, and more-so that Peyton Manning had read his letter and personally responded. I cried tears of happiness and disbelief and asked, “Did that really happen?” more times than I can recall.

The man that you see throwing accurately targeted passes to his receivers is more than a great football player. He is a class-act, devoted to more than just the game. Though meticulously focused on the field, he understands with great awareness the impact he has outside the lines of the gridiron. His life displays compassion, and he has always focused on using his platform as a way to bless others. This was no more apparent to me than during our conversation. This man, with arguably the highest profile job in professional sports and a full schedule both on and off the field, took a moment out of his life to reach out to me and share encouragement.

Though a small gesture to some, the lasting impact our conversation will have on my life is unforgettable. Life is about relationships and those around us. No matter his fame and presence in the National Football League, Peyton Manning gets it. He understands that life is found in bringing joy to others. For that, I am grateful.

Thank you, Peyton.

(As a side note, Peyton Manning played a phenomenal game after our conversation, going 12/14 for 102 yards, 1 touchdown, and a rating of 120.8 in just over one quarter of play in a 34-0 Broncos win. That being said, I’ll gladly assume the position of the good luck charm for the Denver Broncos this season.)

Philippians 2:4 (ESV)

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

Don’t Worry, I’m a Professional

Being a professional is a good thing, right?

I’m no longer a novice, and am far beyond proficient. I’m now an expert at chemotherapy. This upcoming season of treatment will be my fourth go around, after all. In fact, pretty soon I’ll be over the hill with above 50 chemo treatments under my belt. I’m choosing to see this as a positive. I’ve got this chemo happy hour pretty well figured out. Not much can be put past me. Nausea, hair loss, exhaustion, pain, soreness, and aching? No biggie. I’m a pro.

Truth be told, I’m not nervous for my next round of treatment. It could be that I’ve done this for nearly three years and it’s become somewhat of a new “normal” to me or that I have complete peace in my journey knowing that God is sovereign over every detail. Upon learning that I would have to endure more chemotherapy as a result of my latest recurrence, many have asked if I am scared or nervous for this next season. I’m neither. At least, not yet.

I better not be. Happy hour starts next week.

Over these last few days, I’ve had several preparatory conversations with my doctors and nurses in both Houston and Denver. We’re all on the same page, and that in itself is comforting. Our plan goes into effect soon—I will be choosing a recliner in the infusion center next week, and will be ingesting my chemo cocktails in no time.

Each season of treatment is unlike the last, therefore, I’ll be receiving a different type of chemotherapy this time around. Though a self-proclaimed expert in all things chemo, I am still unaware of how this specific prescription will affect me. As a patient, we are given the rundown of possible side effects. Everything from low white blood cells and platelets to extreme tiredness. These are things I should expect with this type of chemo. I may or may not lose my hair… We’re praying for the latter, but won’t be too distraught with the former, however, I do love my curls! Though I won’t know how I’ll react until I receive treatment, I will generally feel as I have felt on chemo these past few years. Gross, tired, and sore.

Side effects may be similar, but the actual regimen called for this time is different than my past experiences. I will be receiving chemo once a week for three weeks in a row, with one week off. I will be doing this six times. Essentially, I will only have one week a month for the next six months where I won’t be getting treatment. It sure does seem like a lot. That equals 18 more sessions, but who’s counting? Yikes.

I’m ready for it. Ready to drive to the hospital every week. Ready to flood my body with copious amounts of poisonous toxins. Ready to feel like crap on a daily basis. Ready to fight. Ready. It’s amazing what you’ll do to try and stay alive.

As always, we will need abundant prayer, support, and encouragement. Remember 10 Ways to Help Someone With Cancer? The tips I provided last year are still very applicable to this journey ahead. We will be needing meals for when I’m feeling too tired, weak, or sick…Though Matt can cook a nice grilled cheese sandwich, his expertise does not reside in the kitchen. He does, however, drive to get take-out far better than anyone I’ve seen before. Gift cards to restaurants help as well. We will need endless support and encouragement, and please keep in mind I am not the only one going through this. My husband is the rock behind the scenes; my guardian standing firmly by my side. He needs as much encouragement as I do. We will also need understanding and grace, as our schedules will firmly revolve around how I am feeling each day. With what you’ve shown us in these last few years, we know you will rally beside us just as strong this time. Thank you for that.

Chemotherapy isn’t fun. It’s not something that I would choose to do had it not been crucial to my recovery. Going through yet another season of treatment doesn’t produce butterflies and rainbows. Instead, it’s brutal and exhausting. Chemo sucks. I love it and I hate it. No matter though, I’m a professional. I’ve got the port to prove it.

Stephanie_Headshot_3

Isaiah 41:10 (ESV)

“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”

Photo: Kimberly Mitiska Photography

Treasures in Texas

MD Anderson Cancer Center

MD Anderson Cancer Center

You know that feeling you get when you’re on your way back home from a trip out of town? The one where, though sad to leave, you are excited to get home and sleep in your own bed? This time I didn’t have it. My trip to Texas was so incredible, I wished I could have stayed longer.

MD Anderson Cancer Center is spectacular. As weird as it may sound, it felt like Disneyland to me. While some may view it as a place where people are dying, I saw it as a place where people are living. The spirit on the campus was breathtaking, and I often had to hold in tears. Walking through the doors of the nation’s greatest center for cancer care was awe-inducing. As if the angels were singing above me, I felt immediately ushered into the community. From the valet attendants and staff, to the doctors and survivors around me, everyone was so kind.

Never did I feel a sense of sadness. Through the view of wheelchairs, bald shiny heads, white coats, and the ever-present ports, I instead felt power, strength, faith, and unwavering hope. We had all shown up that day; a team fighting the same opponent. Arm in arm, mustering up everything within us to defeat cancer. Walking through the halls, I wanted to give everyone passing by a high-five… For all that they have done, and all that they will continue to do.

Among the hope inside it’s walls, MD Anderson is a congregation of camaraderie. A house built to support the strength and determination of people from all over the world. A home to doctors who pour their lives out to help rid our bodies of this disease. A tool for residents and fellows in the shadows of their mentors committed to learning all there is to know about this wretched plague. Survivors. Fighters. Cancer warriors on the front lines. Old and young alike. We were all in it together. Every moment I spent within the campus, I was surrounded by my teammates. My partners in crime. My brothers and sisters facing the same fight I have faced for nearly three years.

There’s something about being aware that everyone around you intimately knows what you are going through. The fears, doubts, and worries are shared. The experiences, surgeries, and treatments are all similar. The prayers, desperation, and pleading is unified. The camaraderie is evident, and though few of us exchanged stories, with a simple meeting of the eyes, we knew. We were walking in similar shoes.

I met with the lead doctor researching my diagnosis, and though I have spoken with him several times over the phone and email, meeting him in person was unlike any encounter I had had before. Upon his entrance into the exam room where I was waiting, I immediately stood up and asked if I could give him a hug. Though a small gesture, It was the least I could do for the one man representing women like me facing such a rare diagnosis. His knowledge astounded me. His passion overflowed. His mission was apparent. He is doing all he can to find a solution to defeat Large (and Small) Cell Neuroendocrine cancer.

After my exam, we sat in an office and went over my case, from diagnosis to the direction of treatment. He told me that he was able to talk for as long or as little as I wanted. This in itself amazed me. He truly is committed to me and my success, and was pouring in whatever I needed while I was there. We spoke about different types of chemotherapy, statistical numbers, the rarity of my specific diagnosis of Large Cell compared to the rare (but more common) Small Cell, the possibility of molecular testing, and maybe even a stem cell transplant.  After our long conversation, we developed a great plan for this fourth adventure. My doctor set up an appointment for a PET scan and contacted the stem cell department to fit me in before I left Houston. I exited his office standing tall and confident in my next steps.

While we are still awaiting results from a few remaining tests, we have chosen a new type of chemotherapy for me to try. After meeting with the stem cell team, we were given a resounding “no” on the idea of a stem cell transplant. There is not enough information to prove that it would be beneficial to my case. Frankly, this is alright by me, as I was simply exploring all of my options and wanted an open door or a closed one, but no in-between. As we expected, my PET scan results came back completely clear and cancer-free. However, though there is no known malignant activity in my body, we must do everything we can to kick it while it’s down. Considering this is my fourth season fighting this stubborn disease, monitoring it is not wise. Therefore, I will be starting a new chemotherapy regimen within the next couple of weeks, and will be back to baldalicious before we know it.

The rest of our trip in Texas was beautiful. The humidity and resounding heat didn’t even bother me! I was too focused on the blessings in my life…The treasures that Texas had to offer. The opportunity to go to MD Anderson. How God worked everything together in His perfect timing. The generosity of those who donated, and the realization that I wouldn’t have been there if it weren’t for my supporters. No matter how hard the trial, blessings continue to come. It’s up to us to see them. Light always overcomes the darkness. Our visit to Houston put a spark in my step and lit a new fire underneath me. I have been refreshed and renewed, ready for this next fight ahead of me.

Whoever said, “Third time’s a charm,” was wrong. I believe four will soon become my lucky number.

Awaiting my PET scan and cancer-free results!

Awaiting a PET scan and cancer-free results!

 2 Corinthians 9:8 (MSG)

“God can pour on the blessings in astonishing ways so that you’re ready for anything and everything, more than just ready to do what needs to be done.”

 

We’re Going to Houston!

We asked and you answered. I am in absolute awe, deeply humbled, and practically speechless at the depth of generosity we have received this past week. As most of you know, we set up a GoFundMe online donation account and were surprised when the financial gifts began pouring in. Each gift, no matter how big or small, has touched us. Every donation sent me into tears of joy and gratitude. For a while, I didn’t know why I even bothered to put on makeup. The tears streamed down my face with each encouraging email, heartfelt prayer, and generous gift.

Within four days, we raised far above our set goal of $10,000. As of today, we have received over $12,000 in donations. This means that we are 100% covered to go to Houston. Our airfare, hotel accommodations, rental car, and deductible is taken care of. All we need to focus on is packing our bags, and I think we can handle that.

I have a confession. In the beginning of last week, I was doubtful. I had no idea how we would get to Houston, let alone how we would be able to pay for any of it. Resting beside my doubt was peace. Is that even possible? Typically, I’d say no. However, this time was different. My flesh doubted that we would have the financial ability to travel and stay in Houston for a week. I was doubtful that all of the moving pieces would come together. A lot of pieces needed to fit cohesively, after all. Yet, my spirit was sure, steady, fearless, and at peace with the impending trip. Like a pendulum, I swayed between doubt and confidence.  In the end, my spirit was telling my flesh, “I told you so.” This friends, is yet another reason to trust your gut. Your spirit is always wiser than your flesh.

There were many times this week after reading your words and seeing the donations pour in, that all I could do was praise God. Often, the only words that escaped my lips were those of thanksgiving. Songs of praise and worship to the One who has been faithful through it all. As I’ve shared, God has shown up every single moment I needed Him. He has never left me high and dry. In moments of desperation, He has arrived with abundant blessings. This moment was no different. When I had no idea how a trip to Houston would be possible, God was there to defeat the impossible. He used you to bless me. And because of your obedience, those blessings completely overflowed my cup. Above and beyond… isn’t that how God usually works?

As if I haven’t cried enough this week. I know I won’t be able to make it through this next part without a tear shed… Thank you doesn’t seem like a sufficient enough way to express our gratitude, but I’ll say it anyway for lack of another expression. Thank you. Thank you for listening to the urging in your spirit. Thank you for obeying the call to give. Thank you for standing firmly beside us and lifting us up when we needed you. Thank you for sharing your encouragement and stories of camaraderie. Thank you for stepping out and making a difference. You truly have made a difference in our lives and have allowed us to see a dream come to reality. Thank you for your selfless donations. Thank you for your sincere prayers and well wishes. Thank you.

Because of you, we are now able to travel the miles to see the doctor who will help us navigate our next step in this fourth battle. Because of you, we are officially going to Houston! In fact, I leave this coming Monday for my Tuesday (7/29) appointment. I could not be more excited. I am thrilled at the reality that I will be meeting the doctor who has helped so many other women with my diagnosis. I can’t wait for this once in a lifetime trip. While in Houston, I’ll be visiting MD Anderson Cancer Center for my appointments. There, I will receive a slew of tests, including a PET scan. In addition, samples of my latest tumor are being sent to Houston where they will undergo molecular testing. This specific test involves the dissection of the tumor to determine its actual makeup, allowing my medical team to create the most beneficial recipe for treatment. In Houston, I will be receiving answers that I’ve long prayed for, and a clear direction of what’s to come.

Matt and I ask that you continue to pray for us as we venture to Houston this coming week. Please pray for safe travels, wisdom, and direction. You may also want to pray for our safety as we try to cope with the horrendous Houston traffic! We are expecting God to do big things while we are in Texas, and ask that you stand beside us in expectancy. God has brought us this far and we have faith that He will bring us through to victory.

Thank you for blessing us.

photo.PNG-2

Luke 18:27 (ESV)

“What is impossible with man is possible with God.”

For further contributions, DONATE HERE!

Photo Credit: Kimberly Mitiska Photography

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.

photo-9

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.”

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.”

422862_915856524442_17293365_n

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.’”

1 2 3 9