diagnosis | Derailing My Diagnosis

Posts Tagged ‘diagnosis’

19
Jun
2013

Faithful Friends and The First Season

Alongside us on this crazy roller coaster through cancer, two of our dearest friends have been planted. They have joined us at appointments, surgeries, chemo cocktails, and numerous cry sessions. They have held our hands as we have ventured into the unknown, and have triumphed with us in the victories. We have worshiped together, prayed for one another, and celebrated several occasions. God brought this passionate, genuine, selfless couple into our lives at the very beginning of this battle, and we can’t imagine having forged our way through it without them standing firm and rallying beside us.

He is a photographer and life-journalist by hobby. He resembles Jesus not only in his physical appearance, but also in his character. Selfless, compassionate, humble, generous, loving, and prayerful. His laugh is contagious and you’d be lucky to catch it. He is a gentleman. A leader. A father. A Christ-like friend. A true blessing.

She is a dancer. Hip-hop, ballet, contemporary, and jazz. A real-life ballerina. She has a heart of pure gold. She is a friend to hold dear for a lifetime. She speaks encouragement, life, and wisdom. Her gentleness, selflessness, and caring demeanor uplifts and offers strength. She is a mother. A hospitable host. A faithful friend. A prayer warrior. A true blessing.

These two have offered shoulders to cry on, words of encouragement, and a multitude of cries to Jesus upon my behalf for healing. They have documented our journey and brought life to a sometimes dark situation. Through photographs, videos, and sound recordings, they tell our story. They have blessed us more than they could possibly know. Today, we share a taste of what they have captured since diagnosis.

Get your tissues ready. If this video doesn’t move you in some way, you might want to check your pulse. This montage captures a glimpse into this battle. It begins at diagnosis in January of 2012, and ends in August of 2012 on the last day of my first season through treatment. At that time, we thought I beat it entirely. Little did we know, we had another year in the trenches. Through hair loss, weight gain, and several firsts… enjoy.

Stephanie Madsen | Cancer Survivor from Mark Nava on Vimeo.

Proverbs 18:24 (MSG)

“Friends come and friends go, but a true friend sticks by you like family.”

12
Jun
2013

Unexpected Early Results

Yesterday morning, I woke up early and drove to the hospital for my three-month follow-up CT scan. Generally I have a fair share of “scanxiety,” yet that morning was different. Maybe my nerves were suppressed due to the overwhelming congestion in my chest, head, and sinuses, or possibly from the after-effect of two amazing vacations. Regardless, I felt confident, ready, and at peace with whatever the results would show. There still was an undercurrent of suspense as I journeyed my way to the life-changing scan, yet I suppose there always will be with every test I receive. That’s what you get with a diagnosis like mine.

After choking down every last drip of the repugnant “fruit cocktail” that would light up my insides, I waited. And waited. And waited some more… Story of my life.

My name was called and I was then directed to the room where the monstrous machine sat eagerly anticipating my body in its grasp. Before I laid down and surrendered to the process, I uncharacteristically asked the radiation tech to take a picture of me flexing my not-so-strong biceps beside it. Odd, yes. But, for whatever reason, I felt the urge to display my strength to the beast that has been trying to kill me. The tech laughed, the camera clicked, and I positioned myself on the scanning table, ready to be sucked into the machine. All the while, praying fervently that nothing would light up.

The nurses, radiation techs, and I chat frequently throughout the process of these scans. We become friends. I give them the run-down of my diagnosis, the long list of treatment, and the hope for healing that I cling to. Many share well wishes and good vibes, while several others say they will be praying with me for complete healing. After the CT machine was done spinning around my body, I was free to go. And as I said my goodbye’s and thank you’s, I caught a glimpse of my tech behind the computer that displayed the vast pictures of my internal organs. I could’ve sworn she was smiling.

No matter how hard I try not to read the faces of the techs as they instantaneously see the resulting photographs from my scan, I still succumb to curiosity. This time was no different. But did I really see a smile form on her face as she examined the results? Maybe I was fooling myself.

Typically, I wait about a week to receive the phone call from my doctor with results from my scans. However, barely seven hours after I had left the hospital, the number of my doctor’s office appeared on my phone screen. SHUT UP. Why are they calling me so soon? I bet all of my insides lit up, the cancer has spread, and they want to notify me that we must proceed with emergency treatment. Dammit. As I nervously answered the call, my ears began to hear unbelievable news.

“Stephanie, we just received the results from your CT, and I couldn’t wait to call you. The results show that there is no evidence of disease in your body. All of your internal organs look normal and healthy. Your liver is normal. Your kidneys are normal. Your ovary is normal. Your lymph nodes are not swollen and are normal. You are currently cancer-free!”

Even as I relive what happened less than 24 hours ago, I find myself speechless. I am in awe of God’s healing power. I am in awe of His faithfulness. I am in awe of His sovereignty. I am, yet again, cancer-free. And yet again, I am a survivor.

This is the longest I have gone without cancer in my body since diagnosis 18 months ago. I received a clear scan in August of last year, but within days, the beast was growing inside once more, and by November I was starting treatment all over again. In March, I was almost done with my second season of treatment and received my first clear scan. Yet, still actively undergoing chemotherapy treatments, I figured, of course the scan would be clear. After all, the poison was still coursing through my veins. But, my scan yesterday was different. This cancer-free proclamation is more meaningful, because it’s the first scan post-treatment that I have received good news. The way my doctors and I view it is, I have been cancer-free for the past seven months. It breaks down to look something like this:

November 2012 (post mass-removal surgery): Cancer-free CT and PET scan
March 2013 (before completion of chemotherapy): Cancer-free CT scan
June 2013 (post all treatment): Cancer-free CT scan

That’s seven whole months that cancer has not invaded my body, and I am overjoyed! I remain cautiously optimistic, but nevertheless we are celebrating this victory. With every ounce of good news, there are heaping amounts of hope. I have yet to see what my future holds, but I am standing firm and believing that through The Lord’s healing power, I am ultimately healed. I celebrate this victory, and I am humbled by the hands of my Savior. He is GOOD! Continue to pray with me that cancer will no longer take residence in my body, and that the glory of God will reign.

Strength before a scan! (June 2013)

Psalm 107: 19-22 (MSG Version)

“Then you called out to God in your desperate condition; He got you out in the nick of time. He spoke the word that healed you, that pulled you back from the brink of death. So thank God for His marvelous love, for His miracle mercy to the children he loves; Offer thanksgiving sacrifices, tell the world what He’s done—sing it out!”

29
May
2013

In Tears, There is Strength

Grief: (n) “Keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.”
Loss: (n) “The state or feeling of grief when deprived of someone or something of value.”

These last two weeks have been particularly full of overwhelming emotions. I’m learning that grief is similar to waves in the ocean. It ebbs and flows. One moment I’m fine, and the next I find myself weeping, unsure of the exact reason for tears to fall so easily from my eyes. My own emotions surprise me. They can quickly appear out of nowhere. Take today, for example. All morning I’ve been productive around the house and even got a good workout in. Yet tonight, I find myself feeling somber, sad, and choked up. I struggle to write.

I’m continuing to grieve the loss of the life I once had.

Grief is a process, I’m discovering. It doesn’t happen all at once. Certain moments can trigger tears as effortlessly as they can laughter. Throughout this past year and a half, I’ve cried more times than I can count. I’ve dropped to my knees in heaving, wailing bursts. Tears have been shed in grocery stores, parks, restaurants, and church. Grief does not have a timeline nor a schedule. It doesn’t require a specific location. It can disappear for days, weeks, and months, and reappear at the drop of a hat.

I don’t enjoy crying. Like many others, I was taught to suck it up and be strong. Yet, no matter how hard I try to remain “strong,” I can’t push away the weak feeling that envelops me. I hate to admit it, but right now I’m sad. Having cancer sucks. Fighting cancer sucks, too. It’s exhausting. It’s tiring. It’s stressful. It’s the hardest thing I’ve ever done. I’ve never felt so weak in my life as I have throughout this battle. This is emotionally and physically draining. While I know that there is purpose in my suffering, I can’t help but grieve the immense loss we’ve experienced. I can’t help but grieve the dreams we had imagined for our future.

Through this, I’m understanding that crying and grieving are essential to my healing. And, that in my tears, there is strength.

In moments like these I focus on ~~something~~ someone bigger than this. I cling to the promise that God is sovereign and faithful. He is here grieving the loss alongside me. He allowed this diagnosis so that my story would be bigger than I ever dreamt it could be. Through these tears, I look forward to the future that God has orchestrated, and the blessings He will pour down over my life. Three things remain… My God, my marriage, and my life. Aren’t those the most important after all? Everything that comes next will be a bonus!

Tonight, I cry. Tomorrow I may not. Grief comes and goes. In these tears, there is strength.

Matthew 5:4 (MSG)

“You’re blessed when you feel you’ve lost what is most dear to you. Only then can you be embraced by the One most dear to you.”

13
May
2013

Disease VS Diagnosis

Trusting in something bigger. (May 2013)

I have come to the realization that for the last 16 months I have only faced my disease (cancer), rather than coming head on with my diagnosis. This is not necessarily a bad thing, and for me, it has been beneficial to my fight.

Until two weeks ago, I did not want to know the details of my diagnosis. I knew that I had been diagnosed with a gnarly type of cancer called Large Cell Neuroendocrine Carcinoma of the Cervix, but the statistics did not matter to me. I felt that if I knew the ins and outs of my diagnosis, I would be brought to my knees in debilitating fear. After all, what I had been told already frightened me. “Rare. Poor prognosis. Less than 100 women worldwide have ever been diagnosed. Aggressive. Resistant to treatment. Recurrence is probable.” In fact, this diagnosis is so rare, there is only one doctor with any knowledge about it. And admittedly, he doesn’t know much. Those words gave me a sense of what I was up against, and I wasn’t ready to find out what this beast really was. I knew it’s identity, but didn’t care for it’s traits. Some may call this naive, but I assure you, this was my version of coping. I was protecting myself in the midst of the most weakest moments in my life. Had I learned the cold, hard facts about my diagnosis, I might have been crippled in times that I needed to pick up my shield and stand firm.

Recently, I had an overwhelming sense that I was supposed to know more than just this beast’s name. I felt ready. Thus began my search. Previously, I had been told by several doctors that there really is not much research nor information about the specifics of my diagnosis, and that if I was interested, I could look at studies of lung cancers. Apparently they behaved similarly. However, instead of investigating cancers similar to mine, I wanted to know more about LCCC (Large Cell Carcinoma of the Cervix) specifically. I came across a helpful website created by my fellow “sisters” in this fight and the doctor studying it. Upon entering, I felt nervous, apprehensive, anxious… and ready. As I clicked on the “Education and Information” section, I knew I was turning the key to the door of reality. I began reading. What is it? Who gets it? What are the symptoms? How is it diagnosed and treated? And lastly… what is the prognosis? I paused for a moment and told myself, “Stop reading. You don’t need to know.” Yet as I was repeating these cautionary words, I could not stop my eyes from continuing on through the statistics. By the end of the section, I was relieved it was over. Relieved that I finally knew why my doctor cried after giving me this LCCC diagnosis. Everything that I had been told had been confirmed. This cancer is a jerk. Don’t get me wrong, all cancers are, but this one is the bully in the classroom that won’t give up.

My heart still races as I share this experience. My human flesh is fearful and doubting. I’m not ready to die. I have an overwhelming number of things I still have yet to do here on this Earth. I have dreams, desires, and goals.

Yet, with these feelings of fear, my hope is in something much bigger than my diagnosis. Someone exponentially larger than this mere irritant called, cancer.

From the beginning of this journey, I have stood firmly in the statement that statistics are just numbers. They don’t matter. My life and death will not rely on numbers that people have put together, no matter how much or how little their research shows. My life and death are reliant on my Lord. He has the end say. He directs my paths. He declares when the fight is over. Not the doctors. Not a website. Not a percentage. Not a number. I cling to my God’s statistics, and through Him I can be healed, no matter the prognosis. Statistics didn’t matter 16 months ago, so why should they matter now?

Often we get trapped in what the world is telling us. Labels, titles, and diagnoses. We forget who has the first, middle, and last say of our lives. No matter how vast my doctor’s knowledge is, my God’s knowledge is incomparable. Our hope gets caged in the confines of a statistical box. We think that if a doctor tells us something, it must be true. While my intentions are not to undermine the immense research and knowledge that our incredible doctors possess, I’m simply saying there is someone higher than this. Often, in our flesh, we cling to the circumstance. Instead, we should be clinging to the promise. Clinging to The Creator, The Sovereign Director of our lives. Clinging to the hope for something greater than this. And that is what I’m choosing to do. Since diagnosis, I have committed to standing in faith, having hope, and embracing joy. That doesn’t change now that I have read the statistics. If anything, it has concreted my faith, hope, and joy.

Numbers vs God. Guess who wins that battle?

Standing firm in God’s statistics. (May 2013)

Jeremiah 15:5-8 (MSG Version)

“Cursed is the strong one who depends on mere humans, who thinks he can make it on muscle alone and sets God aside as dead weight. He’s like a tumbleweed on the prairie, out of touch with the good earth. He lives rootless and aimless in a land where nothing grows. But blessed is the man who trusts me, God, the woman who sticks with God. They’re like trees replanted in Eden, putting down roots near the rivers— Never a worry through the hottest of summers, never dropping a leaf, serene and calm through droughts, bearing fresh fruit every season.”

06
May
2013

Breaking the Bubble via Dude Ranch

Entry to the ranch. (May 2013)

Am I the only one who feels stuck inside of a bubble oftentimes? Maybe you don’t get out very much, stay inside a small radius of your home, or haven’t experienced as much as you would like to. Perhaps your life doesn’t cross the borders of your comfort level. For me, the diagnosis of cancer has continually tried to envelop me inside of it’s bubble. And sometimes, it’s quite difficult to escape.

With frequent doctors appointments, trips to the hospital, and numerous days where I have been held hostage inside our home by my immune system, it’s often hard to get away. Sometimes no matter how hard we try to penetrate it’s walls, the cancer bubble keeps us contained. With this diagnosis and ensuing battle, finding time, energy, and health to enjoy a vacation has been nearly impossible. Key word: nearly.

Check out the side of that barn! (May 2013)

This past weekend, we hightailed it out of our bubble. We managed to escape it’s walls and fully enjoy a memorable adventure together. I haven’t had chemotherapy in over a month, so I have been feeling pretty good. My energy is still lower than I would like, but I am further along than I was four weeks ago. And yet again, God has placed a blessing in our lives… continual proof that He never leaves us.

Months ago, we received an invitation from a family friend to spend a weekend at Lost Valley Ranch. Until a few weeks ago, we had found it difficult to get away. However, this past weekend we packed our bags, hopped in the car, and drove two hours through the mountains to arrive at our destination, the ranch. The incredibly majestic gem hidden away from everyone and everything. No cell service. No TVs. No internet connection (besides one “hotspot” in the dining hall). Therefore, no texts nor calls, no emails, and no appointments nor reminders. We were away from any distractions, and were able to focus without cancer looming over our heads like an unwelcome thunderstorm.

Heaven on Earth (May 2013)

This getaway ranked high on our list of memorable moments. In fact, we agree that it came quite close to our honeymoon in Cancun. Needless to say, it was a much-needed and long overdue break. And not only a break, but a fun-filled adventure. Something that has forever impacted our lives, and has touched us dearly. Memories we will hold close to our hearts for many years to come.

Lost Valley is a guest ranch; A dude ranch. Genuine cowboys and cowgirls. Horses… more than 100 of them. Ponds and creeks full of gorgeous trout. With multiple acreage, the number of activities to experience is practically limitless. They offer a gamut of activities for all ages, and everyone can be assured to have a fantastic time. The food and cabins are superb, and the staff is one of the best we have ever seen. They aren’t your typical “employees,” but are rather a large global family. One that you immediately feel a part of when you cross over the cattle guard and enter the ranch. It’s apparent that they are passionately focused and determined to be ushers of lifetime memories, and our gratitude for that is immense.

We’re officially in the Family Album! (May 2013)

This weekend we made wonderful friendships, roasted s’mores over campfires, square danced until we dripped with sweat, rode horses for hours, caught seven beautiful rainbow trout while fly-fishing, ate incredible food, saw breathtaking mountain views, caught a rare glimpse of five Bighorn sheep, and laughed until our sides hurt. I was brought to tears a couple of times because my heart was overwhelmed with such joy. This weekend will truly last a lifetime. We have come home feeling refreshed, renewed, and centered. Our getaway proved more than we ever dreamed of, and we so look forward to venturing through the mountains and driving down the nine-mile long “driveway” to the ranch once again.

Lost Valley Ranch is truly anointed. What they offer is priceless, and it’s obvious that God has His hand on their property. So obvious in fact, that during the devastating Hayman Fire of 2002, the ranch was completely protected from the flames. Surrounding all sides are vast miles of dead trees, yet LVR was unharmed. If you need to break through your bubble, I recommend journeying to Lost Valley. If you need to press pause on your daily life, check it out. If you want to harvest memories that won’t soon be forgotten, Lost Valley is the place for you. Trust me.

Hangin’ out at the corral. (May 2013)

With this getaway to Lost Valley Ranch, I learned quite a few things…

I’m a cowgirl at heart… peel back those city-girl layers, and soon you’ll find a boot-wearin’, horseback ridin’, fly fishin’ cowgirl.
Wigs are aroma sponges. Get around anything with a strong scent, and rest assured, you’ll be sportin’ that aroma for a while. I’m still debating whether I want to wash the campfire smell from my locks. It reminds me of the square dancing, s’mores, and riding we delighted in.
Cancer can’t steal memories. So make as many as you can.
Denim on denim is appropriate cowgirl attire.
Southern accents rub off. Pretty soon I was slingin’ cowboy lingo in no time flat.
God continually surrounds us. When you can’t see or feel Him, have faith that He is there. He will always show up and show off.

And last, but not least…

Bubbles are not impenetrable. Break through one and you’ll discover life in an entirely different way.

Horseback riding through the Hayman burn area with our guide, Paul… the London cowboy. (May 2013)

Isaiah 55:12-13 (MSG Version)

“So you’ll go out in joy, you’ll be led into a whole and complete life. The mountains and hills will lead the parade, bursting with song. All the trees of the forest will join the procession, exuberant with applause. No more thistles, but giant sequoias, no more thornbushes, but stately pines. Monuments to me, to God, living and lasting evidence of God.”

23
Apr
2013

Cancer Etiquette

Is there really such a thing as “cancer etiquette?” The answer is a booming “Yes!”

I have been asked frequently about what not to say to someone going through a cancer battle, and have decided to finally take the plunge and address the issue publicly. Fact is, although cancer is becoming more and more prevalent in our world, most people still don’t understand how to properly talk with someone facing this diagnosis. Do you say “You’ll be fine,” “That sucks,” or “How much longer do you have?” No. Yet, while there are many things you should avoid talking about with a cancer patient, there are also phrases that can be beneficial. Everyone handles a cancer diagnosis differently. Family, friends, acquaintances, strangers, and the patient themselves will have emotions greatly differing from one another. Though you may feel right in your feelings, always be mindful, respectful, and considerate for the one on the front lines in the fight for survival.

Disclaimer: While reading these, you might think, “Oh crap! I’ve said that!” but please don’t feel bad. We are all humans and make mistakes. I know that it’s not your intention to offend or hurt me (or fellow cancer warriors) when you say certain things. And personally, I don’t keep a tally when I hear something that rubs me the wrong way. Frankly, my brain is pretty liquified from all the chemo I’ve ingested, and I might not even remember your name, let alone something you might have said months ago! In addition, please hear my sarcasm in some of these tips. I’m not intending to be mean, but only trying to add a little twist of humor. And last but not least, please note that not all of the below “do’s and dont’s” may properly apply to everyone with a cancer diagnosis. When in doubt, use your sense. Before word-vomiting on the person, stop and think first. And, when all else fails, treat them as you would like to be treated…Unless you like pity. Ain’t nobody got time for that.

Don’t offer to help unless you really mean it. Sometimes when you see someone close to you get the news that they have cancer, you think that by offering help, we (the patient) will automatically feel better. Think first. Do you really intend to step out on a limb, interrupt your own schedule, and put yourself aside to lend us a hand? If you are willing to help, by all means, tell us. If not, don’t even bring it up. We won’t be offended. If you would like to help in certain areas (providing meals, running errands, financial support) let us know. Being more specific will benefit everyone involved. And don’t expect us to let you know when we need something. Being sick and asking for help is tiring.
Is that a bad kind? Believe it or not, many people unknowingly ask this question. Unless you don’t know what cancer is, you can assume that all kinds of this disease are bad. Yes, there are diagnoses that have greater survival rates, while others have lower success, but the truth remains: cancer sucks no matter what the diagnosis or prognosis.
You’ll be fine. Do you know this for certain? If not, please don’t throw this into this mix. It will only leave us feeling guilty for being sad. Truth is, no one knows how our story will end…except God. And last time I checked, that wasn’t your name.
Don’t ignore us because we now have cancer. I promise, it’s not contagious. Ignoring us will make us feel diseased and isolated from all you healthy folks.
Know-It-All. Yes, there are numerous sources for information in our world today. But just because you have spent hours on the internet researching cancer does not mean you can now put an “MD” in front of your name. Unless you have gone through the same process as us, you don’t know what it’s like. When you uninvitingly share your vast knowledge, there’s a high likelihood we will feel more scared and alone.
Death Sentence. “Oh wow! My grandmother/uncle/sister died from cancer.” This is not helpful in any way, shape, or form.
I can imagine. Really? You must have a very creative imagination. Fact is, no, you can’t imagine what this is like. Have you ingested poison day after day in hopes that it won’t only kill the good cells but also the bad? Have you laid under laser beams that shoot fire into your body? Didn’t think so. Also, pneumonia/pregnancy/migraines are not even slightly comparable to cancer.
Don’t put pressure on us to change doctors or therapy. You may have good-intentions and you may actually be right, but suggesting that we switch doctors or treatment may cause us anxiety. Be mindful of how you offer input, and try not to push it on us. It’s our body and our decision. What worked for your friend may not work for us.
That sucks. Yes, we know it sucks. Please spare us the reminder.
How much longer do you have? Although you may be very curious about our life expectancy, we may not have the answer. And unless we offer this information willingly, assume that it’s a private subject. After all, how much longer do YOU have?
I don’t know how you do it! This statement is laughable. Sometimes, we don’t know how we do it, either. But when it comes down to it and you have to choose between life and death, I bet you would put your shit-kicker boots on and choose life as well.

Now that you know what NOT to say to us cancer patients… are you worried you have nothing left in your arsenal? While there are the obvious no-no’s, you still have options when conversing with us. Believe it or not, there are things you can say and do that are highly beneficial. And sometimes, it’s not always about offering your words, but rather, offering listening ears.

Reach out. While you’ve learned that ignoring us can be harmful, reaching out can do just the opposite. Sometimes we feel forgotten after a few months and years into our journey. Most people forget and move on with their own lives, leaving us feeling stuck and alone. Simply sending a text message, email, or phone call can change our day drastically.
Give us a pat on the back. It may sound weird, but most of us appreciate physical touch. A hug, handshake, or pat on the back shows us that you are concerned. No, ass-grabbing will not be received well.
Listening ears and strong shoulders. When asking us how we are doing, expect a long answer. Sometimes we might just respond with “I’m fine.” But other times, our responses may be long-winded. There are moments where words of wisdom are not necessary. Sometimes we just want to vent or cry or both. Offer to sit patiently and listen.
Encouragement! You like encouragement don’t you? We are no different, besides being bald, weak, and sick. Most likely we are feeling the worst we ever have in our lives. We could be sad, depressed, anxious, and upset. Though you may not see the emotions from the outside, an inner turmoil might be brewing. Simply sharing that you are excited for us to be a cancer survivor, that we still look so beautiful/handsome, and that you know we are strong enough to get through this will lift our spirits. Our physical bodies may be weak, so offering strength and encouragement can inspire us tremendously.
Ask about treatment with no agenda. Be prepared for scientific terms that you may not be aware of, extensive explanations, and confusing answers. Remember, you don’t have to respond. Sometimes we want to share what we are going through, because more than likely, treatment is at the forefront of our lives.
If you don’t know what to say, tell us. We understand, sometimes we don’t even know what to say about our current circumstance. Coming up with a counterfeit response will be noticed. Be authentic, sometimes words aren’t necessary.
Ask if you can pray for us. While some people may politely say “No thank you,” some of us appreciate and value a prayer…or two, or five, or one hundred.
Admiration. We are trying our hardest to hold on and keep fighting. It’s hard. Reminding us that we are brave, strong, and/or courageous (even though we may feel like none of the above) can help.
I’m sorry. This has potential to be slightly controversial. Sure we can say, “What are you sorry for? It’s not your fault.” But equally, I believe we all know that offering this statement is a generic condolence. Most of us will appreciate your concern.
You’re an inspiration. If we have inspired you or someone you know, please share that with us over and over again. Sometimes we feel like our battle means nothing, and simply knowing that our sufferings are helping others in similar circumstances fills our spirit with gratitude. To know that we are making a difference through our journey to help others through theirs is a blessing.
Sharing is caring. This compliments the previous point. If we have done something that has impacted your life for the better, tell us. If you have shared our story and offered hope to a fellow cancer patient, let us know. Not only will it inspire our fellow peers, but it inspires and motivates us to keep up the fight.
Boring and mundane topics are valuable, too. While, there are many times we do appreciate sharing about treatment, struggles, and the journey, we would also like you to remember that we are living life just like you. In most cases, we still go to the grocery store, travel, cook, and clean our homes. Asking us about daily life outside of our diagnosis helps us all remember we are more than a walking science experiment. Ask us what what our favorite foods are… unless we’re sick from chemo. But you get the idea.

1 Thessalonians 5:13-18 (MSG Version)

“Get along among yourselves, each of you doing your part. Our counsel is that you warn the freeloaders to get a move on. Gently encourage the stragglers, and reach out for the exhausted, pulling them to their feet. Be patient with each person, attentive to individual needs. And be careful that when you get on each other’s nerves you don’t snap at each other. Look for the best in each other, and always do your best to bring it out. Be cheerful no matter what; pray all the time; thank God no matter what happens. This is the way God wants you who belong to Christ Jesus to live.”

12
Apr
2013

Defeated. Triumphant. Confused.

One month before diagnosis. Completely unaware of what was to come. (December 2011)

It’s been about a week since my very last chemotherapy treatment, and I’m feeling different than I expected. Physically, I’ve rebounded a lot quicker this round, and in fact, was at church only three days after chemo (that’s unheard of for me). I’ve continued to get better and better faster than I ever have before. I’m not sure why that is, but I’ll take it. Emotionally, it’s a whole different story.

I expected to be jumping for joy on the last day of sippin’ chemo cocktails. But, boy was I wrong. I cried that night. I was both happy and sad that this chapter was ending. Sad, unsure, nervous, drained, and exhausted. Happy, anxious, excited, and overwhelmed. My emotions poured out through tears staining my cheeks. I felt both defeated and triumphant. Alongside my husband, I was utterly confused… and still am.

Shouldn’t I be over the moon, swimming in glitter, and running through fields proclaiming that I’m cancer-free? Shouldn’t I be thrilled? Shouldn’t I be proud when I receive congratulatory wishes? I don’t know, but this isn’t streamers and confetti like I expected.

I find myself feeling lost. I feel as though I was dropped down in a land I know very little about. I’m unsure of what path to take and where to find the roads leading to the dreams Matt and I have harbored. I can barely put my right foot in front of my left. I’m lost. My job for over a year has been fighting an epic battle against this potentially fatal enemy called cancer. I am a professional cancer warrior. I know the ins, outs, ups, downs, sides, and in-betweens of this journey. I have more medical knowledge than I ever knew I could possess. Although my identity is not in this diagnosis, it has been a huge part of my life for a long time. It’s been my job, my responsibility, my purpose. And now that it is potentially over, I don’t know where to go or what to do next.

The truth remains- I am thankful. I don’t wish to be in this battle any longer. If I have to, I will, but I am desperately praying and exhaustedly believing that this monster will no longer see my body as it’s residence. I want to live. I want to see our dreams come to fruition. I want to move on. As I think on and analyze my feelings, I can’t help but understand that I must accept this as a part of my life’s story. Of course, I continue to know that this has forever changed our future as we saw it, but I suppose, somewhere deep inside of me, I believed that we could pick up and move on. As if all of this was just a chapter, and we could turn the page. As much as I would like to forget about this diagnosis and continue on my merry way like nothing ever happened, I simply cannot. And I will forever bare the scars as a reminder of what will no longer be.

We ushered in 2012 joyfully and expectant. We were taking action and beginning to see our dreams playing out. Our metaphorical bags were packed and we were ready to move forward with plans for the new year. Then only a few short weeks later, our luggage of life was removed from our hands and spilled all over the floor. Dreams, wishes, and hopes were scattered and put on hold. More than a year later, I find myself looking at all the pieces and wondering which dream to pick up first. Which piece of the puzzle will be our next step? Where do we even begin to put this back together again? What is our life going to look like now?

Change is necessary. Without change, growth would not exist. And I want to grow, learn, and thrive. While I sit here viewing the pieces of our life’s puzzle unsure of how to put it all back together, I also know that the responsibility of starting over is not completely on our shoulders. We have someone much bigger and far more powerful to direct our steps. Although our life has been changed forever, our desires, hopes, and wishes still remain. And we will continue to stand firm on the dreams God has placed in our hearts. He put them there for a reason. God places those dreams into our hearts, and we follow stride, developing goals of how to see them become a reality. Sometimes God allows change so that our dreams birth bigger fruit.

Changing the circumstance can often change the size of the dream… and I have a feeling that through this diagnosis our dreams have become exponentially bigger. We dreamed of children, but only expected to have them the “traditional” way. Now, our future story of children is much bigger and far better than we could have ever imagined. We dreamed of making a difference in other people’s lives, but had no clue of how that could happen. God saw that dream, and drastically enlarged the outcome. I knew I dreamed of having a purpose, and because God knew that, He surprised me in making my purpose something so much greater than I ever knew possible.

Although I am still confused and can’t begin to see the picture of our future, I know our dreams will enter the journey at some point. I don’t know when or how, but my God is faithful, and if I can learn to sit in this gap between dreams and fruition, I know rewards are coming.

Looking drained and tired, but equally as excited on the last day of chemotherapy! (March 2013)

Looking drained and tired, but equally as excited on the last day of chemotherapy! (April 2013)

Lamentations 3:25-27 (MSG Version)

“God proves to be good to the man who passionately waits, to the woman who diligently seeks. It’s a good thing to quietly hope, quietly hope for help from God. It’s a good thing when you’re young to stick it out through the hard times.”

20
Mar
2013

Cautiously Optimistic

Scans are scary. And the week before and after are often anxiety-filled whirlwinds.

I received a CT scan a couple of weeks ago. You might remember that directly following my November surgery to remove the softball-sized mass, the tumor was sent to pathology. There, it was cut up into several different pieces and tested with various types of chemotherapy drugs. Results showed that some chemotherapies would work, while others were proven to be ineffective. There’s a catch, though. Three of the drugs shown to effectively eradicate my type of cancer, had already coursed through my body during my first season of treatment. Clearly they worked while swimming through my veins, but once I completed the regimen, the monster came out of hiding and grew once more. One of the drugs proven to be ineffective is what I am currently taking. Apparently several doctors don’t hold tight to the results of these biopsy tests. Therefore, my doctor suggested we stick to this proposed type of chemo and get a scan after four of my six scheduled rounds. So, with these rounds of chemo, it’s been trial and error. Let’s see if it works. If it doesn’t, let’s test something else. The longer I’m in this game, the more I’m learning how common the “trial and error” approach actually is. After all, there are no cures for cancer. I suppose it all really is just a guessing game. Unnerving to say the least.

As always, I was a bit on-edge the week leading up to my scan and the week following, while waiting for results. These scans show exactly what kind of game cancer is playing in my body. It’s not a “pass” or “fail” conclusion. It’s “live” or “die.” Often cancer doesn’t show symptoms and can only be detected through these methods. And considering I was technically prescribed a chemotherapy regimen that pathology showed to be ineffective on my type of cancer, my nerves were shot while awaiting the outcome. I ask for a large dose of grace from my dear husband during these times, as he often gets to experience the roller coaster of emotions that surround these scans. Add being menopausal to the mix, and you’ve got a pretty gnarly version of me. Oh…Menopause. I’ll save that discussion for a completely different post.

Last Thursday , I went in for another dose of chemo cocktails. That morning I knew my doctor would probably discuss the results of the CT scan I had received the week prior (3/8). I felt ready. I was ready. In my heart I was at peace with whatever the outcome. The waiting is the hardest. I just wanted to hear the results…good or bad. Before I was even able to speak with my doctor, my chemotherapy nurse walked over, papers in hand, and opened her mouth to speak. I don’t think I’ve seen my husband so nervous in my life. He was literally at the edge of his seat in anticipation. After a confusing introduction and with all eyes on me at this point, my nurse placed the papers in my hand and asked me to read the bottom line. “Impression: 1. Normal CT of the abdomen and pelvis.” So what? What exactly does that mean? As I asked my nurse these questions, she happily proclaimed that the scan showed no evidence of disease! The sigh of relief that Matt released at that point nearly brought me to tears. Sometimes I don’t realize the enormity of his love for me. At that point it was clearer than ever. What a vivid testament that my husband is in this by my side; From beginning to end. The results don’t just mean something to me. I’m not the only one affected. I know these things, but often I get trapped in my own head. Trapped in my situation. When the truth is, it’s our situation. I’m honored and blessed to have such an incredibly strong, faithful, loyal, and committed partner.

Clear CT scan results! (March 2013)

A “normal” result is a positive one. We are celebrating this news. However, I have received this outcome on a scan before. In August after my first season of treatments, I was also declared “cancer-free,” and you can read about that HERE. My attitude in receiving good news has changed since then. Afterall, I did have a recurrence three months after a similar declaration. Cancer came back after I had excitedly celebrated it being gone. Therefore, we rejoice in this news differently now. While we are very relieved and elated, we are cautiously optimistic. Just because I received a clear scan, doesn’t mean I’m forever done with this beast. And, it was only a CT scan which is localized to one area of the body; Different from a PET scan that tests your entire body for malignancies. We are optimistic and thrilled, yes. But we are cautious. We don’t expect cancer to show itself in my body again, but according to this disease, we can’t throw the idea completely away. I don’t think I’ll be fully able to relax and rejoice until I hit remission…in five years. And even then, it will be hard work to trust that I won’t have to deal with this diagnosis ever again.

Some cancers can be eradicated with surgery. Some with chemotherapy. Some with radiation. I’ve had all three types of treatment several times, and the monster continued to lurk and cause havoc. For now, it is gone. I’ve only got one more chemotherapy session in a couple of weeks and I’m happy. But to blissfully believe that I am forever done with this season would be foolish and naive. Cancer plays dirty. It doesn’t play according to our rules. It has none. However, to counteract that thinking, I believe in a BIG God that performs BIG miracles. The fact that cancer has no rule-book doesn’t mean that it can’t be righteously defeated. Statistics don’t mean a thing to me. My God writes my life, not statistics that some analyst wrote down. No matter how awful this Neuroendocrine carcinoma diagnosis may be, God can erase all of that. He healed people all throughout stories in the Bible, and continues to perform jaw-dropping healings today. I am believing that I will be another testimony of being healed and cured. I have faith that He will permanently remove any malignant particle from my body. I am believing that He has filled every single microscopic cell and that cancer will no longer reside in my life. While I stand cautiously on the results of this scan, I will continue to stand firmly on my foundation…on my God. I will continue to wait for His results.

James 5:10-11 (MSG Version)

“Take the old prophets as your mentors. They put up with anything, went through everything, and never once quit, all the time honoring God. What a gift life is to those who stay the course! You’ve heard, of course, of Job’s staying power, and you know how God brought it all together for him at the end. That’s because God cares, cares right down to the last detail.”

09
Mar
2013

Time Stands Still

Truth

It’s been about two and a half weeks since my last post. I typically write an entry once a week, and have found this to be beneficial for both myself and my readers. I’m sure some of you would love for me to post every single day, but I assure you, my life doesn’t have the abundance of fodder to permit daily rantings. You’ve probably been wondering where I went. Fact is, I went on no exotic vacations. I didn’t travel to a warm beach somewhere and sip margaritas. I didn’t fly to the Big Apple and hop on the subway to see a Broadway show. I’ve been here the whole time. But I’ve been feeling like a cancer patient more and more these last few weeks, and it’s as if time is standing still.

While I am an advocate and promoter of living your life as you would without a diagnosis, it’s been difficult for me recently. Side effects from chemo, emotional roller coasters, and the second-by-second battle of the mind have really put a damper on my life. My diagnosis is getting in the way, and it’s quite the annoyance. I’m actually downright pissed… and irritated… and frustrated… and exhausted… and, and, and.

Chemotherapy is cumulative, therefore, it builds up with each dose. This often makes side effects more prominent as time goes by, and in my case there is truth to that. My brain is being affected. I don’t feel like myself. I’m experiencing more and more “chemo brain.” It interferes with my short-term memory, and makes planning things a big task. Even with as organized as I am, some things have been falling through the cracks. Unless I immediately write in my planner what needs to be done, what appointment has been made, or when I plan on getting together with friends, the information just disappears. For some of you this isn’t odd or unusual, it’s a part of your everyday life. For me, this is the farthest from who I am. I like to be punctual. Lately, that’s a hit or miss. I like to remember to-do’s, plans, and appointments. Again, lately a hit or miss. I’m forgetful and indecisive. My brain isn’t registering things as quickly. For instance, I have forgotten whether or not I had already scheduled my next treatment. I have been nearly an hour late to hang out with family. And, when Matt asks where I’d like to go for date nights, I rarely can offer any suggestions.

I feel stuck. I feel like once cancer barged back into my life, everything froze. This second time beating cancer has been more trying. It’s hard to see everyone else’s lives continue on. Jobs, babies, the purchase of new homes, travel. Healing. Though I am genuinely and sincerely happy to see our friends and family continue on through life and in no way am saying “pity us,” it’s a bittersweet feeling. There are so many things that Matt and I want to do in our lives. We look forward to being parents someday, and I ache for that moment often. We look forward to moving to a different state and buying a home. We look forward to being able to travel (anywhere). But, right now I feel stuck. I know that someday these things will happen, but right now it’s as is our future is in a thick fog.

Fighting cancer is hard. And, often people have no clue how hard it truly is. It’s not only a fight for your life, which is difficult enough. It’s staying strong through multiple treatments. It’s standing firm in faith through scans and tests. It’s a one-on-one spiritual war. It’s all the aforementioned, combined with idiotic insurance agents, overwhelming medical bills, and other life drama. It’s not just a fight. My diagnosis has transformed every moment, every nook and cranny, and every aspect of my life. That’s just a fact.

Many of you hate needles. Many of you hate going to the hospital. Many of you hate feeling sick. Imagine getting poked with needles hundreds of times in a year. Imagine having to rush to the ER whenever you experience an unusual symptom. Imagine throwing up so violently you can’t catch your breath. Imagine the worst pain you’ve experienced and multiply it. Cancer sucks. And it pisses me off.

I’ve been asked several times, “How do you do it?!” Most of the time, internally, I am on the floor in hysterical laughter at this curiosity. The answer is, “I have two choices. Life or death. And I choose life.” In addition, I am thankful I have my faith. Without God, I would be dead already. Without my faith, hope would not exist. Without my Savior, I would be weak. But through Him, I am strong. Although cancer is the hardest battle I’ve fought, I refuse to be anything but victorious. It won’t rob me of my dreams and goals. It won’t steal my life.

Time may feel like it’s standing still for my husband and I right now, but one day, the hands on the clock will move once more. However, in the deepest part of my spirit, I know that time isn’t standing still at all. Every day and every moment in this journey is a day and a moment closer to our future. And although I can’t always see how God is working, I know that He is. I’m thankful that he didn’t punch out on His time card, and that He is still moving the pieces in my life.

You know what I look forward to the most? Being a cancer survivor. Looking back and being able to say, “It makes sense. I see how that journey fit together. I see what God was doing.” Until then, I fight to the finish, no matter how hard. Because, after all, I only have two choices.

Psalm 37:5-7 (MSG Version)

“Open up before God, keep nothing back;
he’ll do whatever needs to be done:
He’ll validate your life in the clear light of day
and stamp you with approval at high noon.

Quiet down before God,
be prayerful before him…”

14
Feb
2013

In Sickness and In Health

Today is either a Happy Valentines Day or Singles Awareness Day. For both parties: those who have found their forever love, and those who are still searching for it… Share your heart with those you care about, regardless of your relationship status.

Blessed. (June 2010)

While February 14th is a made-up holiday that our country feels obligated to spend money on chocolates and gifts, Matt and I still enjoy celebrating this day in some way. I challenge each of you to do the same. Don’t get me wrong, though. I’m not suggesting that you go out and spend money that you may or may not have on someone you may or may not truly love. My challenge to you is simply sharing your heart to those in your life who mean something to you. Write a letter. Make a phone call. Send a text. We’ve all heard it several times, “You never know what day is your last…”, and it’s the truth. My husband and I take this sentiment to heart. And frankly, this began well before my diagnosis. We never leave a conversation over the phone without saying, “I love you.” We never walk out of the house without saying, “I love you.” And it may sound weird, but we always end an argument by saying, “I love you.” We don’t want our last conversation to be one that we haven’t shared our love for one another. Every single day, I know how much my husband loves and cares for me, and he knows how much I love and care for him. There will never be a moment that either of us questions that. I encourage you to live in the same way. You don’t have to have a spouse in order to share your heart. Do you care about a friend? Tell them. Do you appreciate your family? Tell them. Do you adore your spouse with every fiber in your being? Tell them.

Love and adoration. (June 2010)

This will be Matt and my 5th time celebrating this “holiday” together, yet he is my valentine every single day. I adore this man. He has guarded, honored, loved, and tended to my heart since I gave it to him in 2008. He has loved me unconditionally no matter how much I may complain, no matter what my body looks like, and no matter what I do or don’t do. His love for me is selfless. He is the leader of our family, the calm in many of our storms, and the strong rock that I can lean upon. His character is outstanding and deserves applaud. He is level-headed, compassionate, strong, loyal, patient, and he finds a way to make me laugh every day. He treats me better than I often deserve. He makes sacrifices in order to assure that we are happy. He works his butt off to provide for our family. He is my best friend. The one I laugh and cry with, the one I share secrets with, and the one person who has never left my side. From before diagnosis through this very day, he has remained steadfast and faithful to our vows. This diagnosis has only brought us closer together, and has grown our love and affection for one another in ways I never knew possible. My diagnosis is scary, let’s face it. And although he has the chance to run away and find a healthy and fertile woman, he doesn’t. Because I am his woman. This journey has never been an easy one, and it often gets harder each day, however, we have committed to be in this adventure together, and no disease will ever change that. He is truly the man of my dreams. The man I always dreamed about and prayed for, but never imagined marrying. I am eternally blessed.

This morning, I reflect on the vows we promised each other more than two and a half years ago. They remain the same today and forevermore…

Vows. (June 5, 2010)

“You are my best friend. Today I give myself to you in marriage, in the presence of God, family, and friends. I promise to stand by your side in sickness and in health, in joy and in sorrow, as well as through the good times and the bad. When life seems easy and when it seems hard. When our love is simple and when it is an effort. I promise to love you without reservation, comfort you in times of distress, encourage you to achieve all of your goals, laugh with you and cry with you. I promise to cherish you and always hold you in the highest regard. I look forward to raising our family and building our relationship under the care and guidance of God. These things I give to you today, and all the days of our life. I love you.”

Matt, I adore you. Thank you for standing by me through the easy times, and the most recent difficult times. Thank you for being my guardian. Thank you for continuing to take care of me, and making sure that I am alright. Thank you for firmly planting yourself by my side through this diagnosis and the slew of surgeries, treatments, and hospital visits. Thank you for believing that I am still beautiful, and thank you even more for telling me every day. Thank you for being the servant-like leader that God has called you to be, and for guiding us on the path that He has prepared for us. Thank you for your never-ending encouragement. Thank you for your unconditional love. Thank you for providing for us, and doing whatever it takes to keep us afloat. Thank you for the many sacrifices you make to ensure that we are happy. Thank you for your unwavering patience, your listening ears, and your words of wisdom. Thank you for continuing to put up with me. Thank you for believing in my healing and sharing that you are proud of me. Thank you for praying with and for me. Thank you for protecting me with strong and gentle hands. Thank you for never giving up.

Swoon! (June 2010)

I honor you. I respect you. I’m proud of you. And, I love you. I always have and always will…LINABEW.

1 Corinthians 13:4-8 (The Message)

“Love never gives up.
Love cares more for others than for self.
Love doesn’t want what it doesn’t have.
Love doesn’t strut,
Doesn’t have a swelled head,
Doesn’t force itself on others,
Isn’t always ‘me first,’
Doesn’t fly off the handle,
Doesn’t keep score of the sins of others,
Doesn’t revel when others grovel,
Takes pleasure in the flowering of truth,
Puts up with anything,
Trusts God always,
Always looks for the best,
Never looks back,
But keeps going to the end.

Love never dies…”

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