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01 Apr 13:51

When Cancer Isn’t Just a Bad April Fool’s Joke

by Mandi

My cancer experience- Making Nice in the Midwest

We’ve all done it. Made bad jokes in poor taste. Laughed really hard only to find out what we were laughing at wasn’t a joke. Well, it was April first 2013, and I was sitting in a cold, sterile room at the Cleveland Clinic with my mom and my eight-month-old baby, Lucy. It had been a little over a week since my intense six-hour surgery to remove an extremely rare and aggressive paraganglioma from my carotid artery.  We were waiting to see what else the surgeons had found while they were in there. Hopefully nothing. My neck was the size of a football, I was swollen, sore, and I had trouble taking off my coat, so I just left it on. I was perched awkwardly on the edge of the tall, vinyl patient’s chair, staring across at my mom who was bouncing Lucy on her lap, because I couldn’t.

“Are you nervous?” she asked.

I said I wasn’t. Well, not really, I said. I wondered if I was telling the truth. We waited. The resident surgeon came in and checked my stitches, checked my nerve function, and told me Dr. Scharpf would be in to see me soon. I wanted to yell after him, “Just tell me! Please, just tell me! Am I going to die?” A few minutes later, my surgeon walked through the door, made the obligatory cute baby remarks, and shook my hand as he looked into my eyes, his own reflecting compassion and concern. I think that’s when I knew what he was going to tell me.

I really don’t remember anything he said before it. I only remember straining my neck a bit to look into his eyes when he softly said, “Unfortunately, your tumor was malignant.” He paused. Probably not for dramatic affect, but boy did I feel the drama of that moment. The weight of it.

I couldn’t look at him any more, as he waited for me to respond. So I relaxed my neck and looked ahead at my little baby Lucy. Malignant, eh? I looked into her big brown eyes, and what did she do? She started giggling histerically. Her little baby mouth opened wide and she just laughed! Her cute little face broke out into the biggest, slobbery smile, completely oblivious that her mama had just heard the scariest news of her life. Lucy just laughed. And it was the best comedic timing for the worst April Fool’s joke I’d ever experienced.

So I turned back to the doctor, smiled at the irony of the moment, and asked, “So, now what?”

Her cute little face broke out into the biggest, slobbery smile, completely oblivious that her mama had just heard the scariest news of her life.

I never expected to have cancer in my twenties. Even when they first found my tumor, they had told me it was benign. I used to pray to God to never let me get cancer at a young age, because I wouldn’t be able to handle it. I knew it would make me angry at God, and I wasn’t the kind of person who could fight cancer. I just knew it. Or at least, I thought I knew it.

I was spared from the knowledge of my own cancer, but I was still afraid of this rare, mysteriously tumor in my neck. I had joined a paraganglioma and pheochromocytoma Facebook support group online after finally discovering the group during one of my scary, late night “paraganglioma tumor” Google sessions. I was mostly just really afraid of either not making it through my surgery, or living the rest of my life with a feeding tube or the inability to talk, because of damage that could easily be done to the nerves that were bundled in front of the tumor. My doctor described the tumor resection as cutting out a meatball that’s tangled up in bowl of spaghetti. The red visuals of pasta sauce and tumors didn’t help me feel any better. Because of the support group, though, I connected with other people who had lived through the same surgery, and they all offered me such support and encouragement, and only some of the people I initially talked to were living on feeding tubes or dealing with other side effects or recurring tumors.

But still. The idea of surgery on my carotid artery was super intimidating. I would lay awake at night, staring at Lucy, wondering if she would have to grow up without ever knowing me, with only pictures and stories to communicate her mother’s love for her. I then began thinking about death a lot, and how near it constantly is. People at my church would tell me, “For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you.” But quoting scripture at me didn’t ease my concerns. I believe that we live in a physical world where physical things go wrong regardless of what we do, what plans we make, or what God wants for our lives. Bad things happen as a result of choices other people make for us, poor timing, or weird genes. I thought, what if I’m dead in a year? That might be what my future holds, even if it isn’t God’s plan for me. Telling me “you’ll be okay, God is faithful” certainly didn’t ease my worries, when my mind was going a mile a minute.

My cancer experience- Making Nice in the Midwest

my cancer story

A friend of mine agreed with my thoughts about how silly it is when people tell you “everything will be fine.” She said, “We don’t know if it will be fine. But there are things we do know.” And then she reminded me of all of these little miracles that I had completely forgotten.

She said, "We don't know if it will be fine. But there are things we do know." And then she reminded me of all of these little miracles that I had completely forgotten.

  1. When I was in the hospital for a mysterious illness with symptoms that mirrored those caused by active paragangliomas, the doctors kept searching for the cause, and ended up discovering this inactive tumor that would have gone undetected. They never did find out what was wrong with me, but I began recovering after the tumor discovery. (You can read a bit about it here.)
  2. Initially they told me the tumor was benign after an investigative biopsy. That caused me to go through my entire pregnancy without stress or worry about having cancer or deciding if I wanted to have cancer treatment during pregnancy.
  3. I had been told by surgeons that I could keep an eye on the carotid body tumor for years, because they are typically slow growing and mine was benign (they didn’t find out it was actually cancerous until after surgery). But Phil was told that he would no longer have a teaching job, and while we asked God why all of these bad things were happening (job insecurity plus lots of hospital bills), we felt like I was being led to have the surgery immediately since we might not ever have such good health insurance again. I would have waited to do the surgery if Phil had that job security, and the aggressive cancer would have spread throughout my body and would have been untreatable by the time it would have been detected in my other organs.

I began to think about these little miracles, and my perspective slowly started to shift. I had been stressed and enduring sleepless nights because everything in my life seemed like it was spinning so out of control. But then I realized I never really had control to begin with. Control is just an illusion, isn’t it? Before that month, we thought Phil had job security, but who really has job security? Nobody. Because we never know what tomorrow holds. I had been bitter about my debilitating sickness back in May- the one that led to my tumor discovery. But it made me realize, the things that we perceive as bad may actually be the perfectly formed pieces of a grander scheme.

my cancer story

What makes us decide something in our life is bad? Because it makes us feel bad? Because it makes us hurt? We think cancer is bad because it makes us sick, and because it makes us sad. So, cancer=bad. But I began to learn that just because something makes me feel bad, doesn’t mean that it is bad for me. My person. My soul. Just like physical training is difficult and painful, but necessary for building an athlete. People say, “Why do bad things happen to good people?” But now I ask myself, why do we see certain situations as bad? Because our personal perspectives limit us. And preparing for this major, uncertain surgery totally destroyed my personal perspective. Little did I know, a cancer diagnosis would push my limits even further and take me to places I had never wanted to go, but would never undo if I was given the chance. 

My perspective also began to change through prayer and reading scriptures. Every day, Phil prayed with me that God would take away my fear and give me peace. That same friend who had reminded me of the ways God was working good through the bad in my life confessed to me the grip that worry and fear had on her life. She gave me a set of notecards with Bible verses that speak peace into her own life. I read verses like Psalm 46 in my friend’s own handwriting, “God is our refuge and strength, an ever-present help in trouble. Therefore, we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. Selah.” We continued praying for peace, my friends asked God to give me peace, and my heart was transformed from fearful to steady and sure. Psalm 55:22 says, “Cast your cares on the Lord and he will sustain you; He will never let the righteous be shaken.”

My cancer experience- Making Nice in the Midwest

my cancer storyFinally the day of surgery came, and they wheeled me down the long, cold hallway, away from my waving family, while I managed to smile and hold back my tears, lest my emotions become contagious and plague them in the waiting room. This was it. There was no more waiting. ”See you soon!” I said, though I thought, I may never see them again. And I thought how sad Phil would be if the doctor’s had to tell him, “We did the best that we could, but…”

 This was it. There was no more waiting. "See you soon!" I said, though I thought, I may never see them again.

The doors closed behind me, and I finally let the tears slide down my face. The man who was transporting me to surgery put his soft hand on my shoulder and assured me in a low, friendly voice, “You’ll be okay, sweetie. It will be over before you know it.”

I sighed a shaky sigh, but the touch of his human hand had broken down the dam I had built up against my emotions, and I just felt even more scared and alone. He told me all of these nice, reassuring things as he wheeled me around turns, over bumps, and through doors. And he even told me God would protect me. I’m not sure if transport people are allowed to tell you that, but I sure was glad he did. I started breathing easier again. He parked me in an alcove next to my surgery room, and I waited there, alone with my thoughts for about a half hour until they finally wheeled me into the OR. I thought, I’m either going to wake up feeling like crap in the ICU, or I’ll wake up and see Jesus face-to-face. And I suddenly felt calm. And I was okay with either scenario. I really was.

There were two surgeons and a room full of nurses, residents, and one anesthesiologist during my surgery. Someone asked another person in the room if my pregnancy test came back, and I interjected with a laugh saying, “It had better come back negative! I don’t think I’m ready for any more surprises!” And then I saw my surgeon, the kind, blue-eyed Dr. Scharpf who proudly wore a Cleveland Browns scrub cap. He was my ENT who would be resecting the tumor from beside my carotid artery while the head of vascular surgery, Dr. Clair, stood by “just in case.” Because I guess you just never know what’s going to happen when cutting out a rare tumor with unknown properties alongside of a carotid artery.

I had an incredibly difficult time coming out of anesthesia after what was only supposed to have been a three-hour procedure, but had turned into an intense six-hour surgery. I was groggy and miserable, and I couldn’t speak, but I had enough of my wits about me to detect the look of concern when Dr. Clair came into my room and told me that he was glad I was awake and that I win the prize for being the most difficult surgery he has ever done. Wow! I thought, should I be honored? Scared? Relieved? Thankful? Then he said they were concerned because of how aggressive the tumor ended up being, but I was a bit too groggy to put two and two together at that point. He said they had sent in the resected tumor to pathology and they would get the results back in a week or so.

My cancer experience- Making Nice in the Midwest

my cancer storyWell, there I sat in the doctor’s office, facing an adorable laughing baby and the ugly reality of cancer. He said malignant. Malignant? Yes, malignant. I had cancer. I didn’t know what stage it was, what treatment I would be receiving, or what my future held, but I had this incredible feeling of peace. I scheduled an appointment with my oncologist (I had my own oncologist? Crazy town!) and went to the cafe to get coffee and treats with my mom and little Lucy.

“Is it weird that I feel relieved?” I asked Mom as I munched on a a chocolate filled, artery clogging, who-gives-a-crap pastry.

“Is it weird that I feel relieved?” she replied, absolutely surprising me.

They had found cancer in my body. But they had found it. It had been found. I would never have to wonder if maybe they had missed it, and it was growing in hidden places inside my body. I don’t know why, but I had this weird peace, and that same peace that God had given me, he had given to my mom and to Phil. I looked around the hospital cafe and wondered if anyone else there had just learned they had cancer. Was anyone there facing death too? There were people from all over the world, all seeking healing and treatment for physical ailments. And I wanted to reach out and touch each of them, somehow transferring some of God’s peace from my heart through my limbs, out from my fingertips and into their own hearts.

But instead I just washed my chocolate pastry down with some coffee and wondered how I was going to tell my family. The timing was incredibly awkward, because after we drove home to Canton from Cleveland, our family had to prepare for my grandma’s calling hours that night. She had just passed away over the weekend. Everyone’s emotions were high. I didn’t want to burden them with my news. But everyone was in the same room. And they were all asking the same questions. 

“Did you get your pathology report?” “How did your doctor’s visit go?” “Did you get good news?” I shifted my eyes to Phil. He shifted his eyes to me. I shifted my eyes to my mom. And then the hard part began.

My cancer experience- Making Nice in the Midwest

Telling people I had cancer was the hardest part of my experience. But oddly, it at times was also the most gratifying. I’m not one to open up easily about how I really feel inside, or what God is doing in my heart. But I felt vulnerable, and wondered if I was going through this for a reason. And there was also the freakish peace that never left me through the course of my treatment and recovery. So, as my family and friends’ eyes welled up with tears, I was able to embrace them and comfort them saying,  ”I’m okay! I’m really okay. I promise. Don’t be sad. I don’t know what will happen, but it will be okay.”

I think people thought I was putting on a brave face. But I am telling you, I have never seen a sick person healed, I’ve never seen the Red Sea parted, and I’ve never seen a person raised from the dead, but I did witness a miracle in my own heart when I had prayed all of those sleepless nights for peace from God, and then he gave it to me. And it didn’t stop there. As many cancer patients know, a lot of good can come from that dreaded diagnosis. Your priorities, which may have been lop-sided and careening out of control, begin to rearrange themselves as you realize what is important in life, and what isn’t. You’ve got cancer, sure. But in the meantime- there’s life! Life is meant to be enjoyed, not to be simply endured or grasped tightly with fear. Every day is a gift, and cancer was the reminder of the brevity of life and the urgency to seek higher things and enjoy simple pleasures.

my cancer story

Not every day was joyful, though, and not every moment was filled with that divine peace. Lucy was learning to make funny noises and communicate her affection to me, and I dreaded the thought of maybe having to leave that behind. We didn’t know how progressive my cancer was, and while I was waiting for the results of my full body scan, one of the members of my paraganglioma support group passed away. And then, a day later, another woman’s life was taken by the tumors that had spread throughout her body. She was young like me. She had a little child, like me. And my heart ached so powerfully and deeply. And I battled fear. And I prayed to God. Oh, how we prayed to God. I read those Bible verses over and over again. “For God has not given us the spirit of fear, but of power, and of love, and of a sound mind.” (2 Timothy 1:7) “For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you.” (Isaiah 41:13)

My cancer experience- Making Nice in the Midwest

We were all so, so relieved when the full body scans couldn’t detect any more cancer in my body, and I went into my radiation treatment feeling hopeful, though a little anxious about the side effects. People in my church family told me they were praying for me, and I knew they were, because I could feel it! But more than that, those friends and family selflessly helped us get through the exhausting days where I couldn’t take a shower, much less cook, so they would bring us food to eat, clean my toilets, and wash poopy diapers. And when the bills came in, we even had people ask us how much more we needed before they were paid off! Cards came in the mail, and my beautiful friend organized an online fund where my blog friends contributed to help pay for some of my cancer treatment meds that helped make me less miserable during the days when my mouth was full of big, bleeding sores and my neck was on fire with literal burns from radiation. Yes, I felt sore, I felt tired, and I felt bad for myself sometimes. But most of all, I felt loved. I felt peace, and I felt like I had this amazing new perspective on life and couldn’t wait to get out there and just delight in life.

My cancer experience- Making Nice in the Midwest

So here I am, you guys. It’s been exactly one year since Lucy’s outburst of laughter in light of my cancer diagnosis, and I can look back on that day fondly. What a blessing to have that little babe laughing her way through my cancer treatment, reminding me of all the things I have to be thankful for and enjoy, even in the face of death, doom, and despair. Sometimes I feel like it’s cheap for me to say how amazing my cancer experience was, because I survived, and I am healed. But you guys, it was hard. It was really, really difficult. Through it all, God revealed himself to me because I sought him in the darkness that I felt. He took something I thought was a curse and turned it into a blessing. I’ll never be the same.

 

The post When Cancer Isn’t Just a Bad April Fool’s Joke appeared first on Making Nice in the Midwest.

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