June 2014 archive

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.”

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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