A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for April, 2009

New Excerpts to Check out

Hey!  I posted two new excerpts from Grace!   Check em’ out under “excerpts” on the right toolbar!  Will have some more comin’ soon!

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Grace – First Chemo Day Excerpt

“Are we done?” I mumbled indistinguishably.

I opened my eyes as much as I could, the towel over my head obstructing my view. I saw faint, blue blobs, nurses masked by an un-clearable blur. I tried to say a few other things to them, but my mouth was not capable of producing words. It was as if the cable connecting my brain and mouth had been severed, and it became frustrating. I then realized the intense pain in my left arm which radiated all the way up to my shoulder. I saw a strange contraption hooked on at the bend in my elbow, and when someone adjusted it, I grimaced in pain. I wondered where my parents were.  We were done, right? Right?

Suddenly, I heard Dr. Dan’s voice as he reentered. Several nurses flipped me on my left side and began to scrub my lower back, practically my rear end. It hit me. It was not over…I had awakened right in the middle of it. Panicking, I shut my eyes, thinking that I could make myself return to unconsciousness. But when I slammed my eyelids closed, I witnessed something just as scary, I was hallucinating. Just about every possible color flew around in a whirl, making me the dizziest I have ever been. It was a dizziness that, if it was possible to die from dizziness, would have killed me. Also, for an instant, I saw the image of my mom, and I remember crying out to her in my head.

Thinking she was all too real, I screamed, “Mom! Mom! Come back! No, I need you!”

Her loving face was sucked into the spiral of flying colors like a dust mite up into a vacuum. My heart couldn’t take it, I opened my eyes once again, but terror gripped me. It was either the nightmare of all nightmares, or I was a spectator of my own surgery. I thought it was the end, I was almost positive that this was what it felt like to die. I was going insane, and nobody had a clue. Just when I thought I had nothing left, I remembered something. It was a Bible verse that my mom had taught me. She had said it to herself as she was in labor and gave birth to my brothers and I. Not knowing where else to turn, I turned to God.
“I can do all things through Christ who strengthens me,” I whispered internally. “I can do all things through Christ who strengthens me,” I repeated.

And that was it. I knew that no matter how painful or frightening it got, I could do it. I was in awe by how it spoke to me. I told myself that if we can do anything with the Lord’s help, then we should not be afraid of anything. Pain is just pain, and God went through so much more of it for us than I can even imagine. God can do this, it is easy for him, and he lives within me. Therefore, I can do this, no, I will do this. Just as the Spirit of the Lord empowered my soul, the big, long needle pierced my pelvis. The pain was so intense that I let out a bloody yet silent cry inside my head. It was like nothing I had ever experienced…or hope to experience again. And as Dr. Dan harvested my marrow, I talked to myself.

“The Lord is good. He is here with me,” I remember saying.

I pictured Jesus, my savior, taking all of the suffering from me, bearing it all himself. I knew that He would do this for me, and just the thought of it seemed to numb some of the discomfort. I am not sure if I finally returned to sleep or passed out from the pain but, after that, I have no recollection of anything. Maybe even the Lord, with his heavenly, pure anesthesia, heard my prayers.

copyright by Melinda Marchiano, author of Grace

Grace – First Biopsy Excerpt

     The time had come. I heard the squeaky wheels even before I saw a man with a stretcher pull up to my door. I was relieved and ready, but jittery and procrastinating. I went to the bathroom one more time, funny how we overlook the simple things like going to the restroom before surgery. Realizing how weird the patient ID tag around my wrist looked, I gave in and crawled under the starchy, white sheets on the stretcher. I had made a big step toward grasping the tough reality. Mom and Dad walked along side as I was wheeled up, down, here, there, and everywhere by Joe, a great guy who became my personal driver, if you will. I cracked a smile… it was kind of fun. But my self-pity got in the way. I felt so screwed up. Probably one of the weirdest things is having people stare at you as you roll by. They hesitantly peek, as though they’re expecting a mangled, undistinguishable thing to glide past. They sure did get a surprise when I went by, smiling and waving at them. Yeah, I milked that stretcher ride like Miss Pepperoni in the Parade of Pizza. We pulled up to a humongous door, it splitting as Joe pushed a Paul Bunyan size button mounted on the nearby wall. Once again, a whole new world was revealed. The planet OR. It must have dropped about 15 or 20 degrees when we entered the pre-op area, and I snuggled in deeper under my blankets, trying to shake off the uncomfortable chill. Lying down, I was unable to see the schedule board, but my mom later told me what it read. In big letters, I was written on it like the Catch of the Day, battered, fried, with a side of slaw and unlimited soda refills. Nah, just kidding.

     It said, “Melinda Marchiano– Anterior Mediastinal Mass.”

copyright by Melinda Marchiano, author of Grace

Grace – Oral Contrast Excerpt

     With already one down, I chugged another nauseating bottle of oral contrast. For those of you who are not familiar with this delightful substance, I shall explain it to you. It comes in a clear, glass bottle, one that makes you believe that the milkman just pulled up in his horse and buggy with fresh, ice-cold milk. It reads, “Barium Sulfate,” a.k.a oral contrast. When you glance at the back, as if to read the “nutrition facts,” you are informed that it can interestingly be taken orally, intravenously, or rectally. That made me appreciate the fact that I was drinking it. But, ah, the taste. At first whiff, it emits a vanilla scent, and you are momentarily tricked into thinking it is a sweet, smooth milkshake from your favorite fast food place. But as soon as the foul liquid slides to the back of your mouth, the chalky, bitter taste creeps up and hits you like tax day. Your mouth becomes pasty and dry, along with the glamorous bloating, stomach upset, nausea, dizziness, and loss of appetite. To add a cherry on top of the sundae from hell, you must fast before your scan. I pictured my belly, it screaming for food, but only full of the sloshing, nightmare milkshake. So I had my moments of weakness and crabbiness, and I also directed several hateful comments toward the innocent glass bottle. But I eventually got it down without any choking, gagging, etc.

copyright by Melinda Marchiano, author of Grace

About the Author

 

 

Melinda Marchiano

 

 

 

During the summer of 2007, Melinda was 13 years old. She enjoyed playing the piano, writing stories, developing her kitchen cuisine, and above all… dancing. Since she was old enough to stand on two legs, Melinda has loved dancing. By this time, ballet had become her passion, and she was taking dance classes 5 days a week.

In August of 2007, Melinda began to notice changes in her health. When it was more difficult than usual for her to breathe as our family hiked to the top of Yosemite Falls in June, she thought it was her imagination. But as we traveled northbound in August along winding highway 101 to Uncle Jeff’s in California Redwood Country, there was no mistaking that the curving roads were making her feel awful. She remembers trying to fall asleep while we were staying there, and noticing, for the first time, it was difficult to breathe lying on her back.

By September, Melinda was feeling poorly. She was dizzy, pale, and she was fighting fatigue. We began our weekly, sometimes bi-weekly trips to the doctor. The day we went for her very first appointment, her new doctor suggested that Melinda might be depressed! When I couldn’t hold back my guffaws at the thought of the doctor’s first diagnosis, she then ordered a blood test. I’ll never forget the look on Melinda’ face the morning she had to go for her first “poke” to draw blood; she was terrified.

When October arrived, Melinda had already had so many blood tests that the veins in her arms were beginning to form scar tissue. At this point in time, she was diagnosed with anemia and we were requesting more tests to determine the cause of the anemia. The iron supplements her doctor prescribed made her look and feel even more sick. As her health steadily declined, we kept requesting more diagnostic tests. She had a kidney ultrasound and an echocardiogram, and we even went to see a pediatric hematologist/oncologist who examined Melinda and then assured us that she did not have cancer.

As November rolled around, we were desperate to find out what was wrong with Melinda, so that we could get help for her. By this time, she was barely able to participate in her daily ballet classes because she had no energy. She would become very dizzy, and she had what she called a high-pitched “dolphin cough” when she would exert herself. At our very next appointment with the doctor, we asked for a chest x-ray to check on that cough, and the x-ray came back abnormal. Melinda’s new pediatrician ordered a CT scan, and we finally found what was making Melinda so very sick. She had an enormous mass in her chest that was constricting her airway and also the flow of blood in her body. Dr. Gonzalez was very kind and gentle when she told Melinda and I the results of the CT, and we will always be grateful for the time she gave us alone to hug one another and cry. We had such mixed feelings– we were so happy to find her problem, but at the same time, we now knew that our precious girl would have a huge battle ahead of her to get well.

On November 29th, 2007, we met Dr. Daniel Greenfield at Cottage Hospital. Immediately, we felt confident with his care. The next day, Melinda would have a PET scan and then, soon after, she would need a biopsy. Because the mass was so large, there was a danger of her airway collapsing during surgery and special anesthesia arrangements were made beforehand to assure Melinda’s safety. Unfortunately, the first biopsy did not provide information for a diagnosis, and Melinda had to undergo a second biopsy surgery. On December 18, 2007, Melinda was diagnosed with Hodgkin’s Lymphoma. Finally, we knew exactly what was wrong with her, and now, finally, we could begin an all-out attack on this dreadful enemy that had invaded her body.

Two days after Christmas, Melinda checked in to Cottage Hospital to have surgery for the insertion of her PICC line and to begin her first round of chemotherapy. She had a severe reaction to the anesthesia, and she was still battling the effects of the reaction when the first chemotherapy drugs began pumping into her little veins. This became the most difficult day of Melinda’s life. I remember lying next to her in her hospital bed, holding her hand as she moaned from excruciating stomach pain, and the tears rolled down her cheeks. All I could do was cry with her and tell her, “at 13 years old, you are going to be a cancer survivor.”

January, February and March of 2008 brought chemotherapy rounds 2, 3 and 4. Each round, Melinda would spend 3 days at Cottage Hospital, and she grew to love her nurses who gave her tremendous care. She named them the Blue Chemo Fairies because of the blue, protective gowns and gloves they wear when they administer chemotherapy. One night, Melinda played the piano (“Can’t Help Fallin’ in Love with You”) in the waiting room for her nurses. Another time, she made them a delicious, Valentine’s Day gingerbread house. On her last hospital chemotherapy day, she planned a party in her room and invited all of the nurses. She taped a balloon to her bald head, wore her Goofy gloves, blasted dance music, DANCED, brought cookies she had made from home, and she had games to play like “Pin the Bag of Chemo on the Mass.”

With four months of chemotherapy behind her, April brought 3 weeks of radiation, and daily drives to Santa Barbara. Once again, Melinda brought gratitude to those who treated her. The Cancer Center will most likely never be the same post- Melinda. Each day she would bring her enormous stuffed gorilla named Antonio and he would dress as a different character. Some of his more memorable characters were: super-hero dressed in tights, mask, and cape; biker with leather jacket, bandana, and dark shades; ballerina with tutu, tights, pointe shoes, and tiara; and for the last day, he wore a chef’s outfit while carrying a basket of Melinda’s home baked cookies to thank everyone for their outstanding care.

Throughout Melinda’s illness, she has continued to dance as often as she possibly can… and many times when it really seemed like it should have been impossible. Somehow she was able to perform in the Nutcracker last year while she was recovering from biopsies and while she had a huge mass in her chest that made it difficult for her to breathe. As soon as her blood counts came back up during her rounds of chemotherapy, there Melinda would be, in class at the ballet bar, doing whatever she could with the strength she had that day. She claims that her bald head just helped her be more aerodynamic in the turns!

 

Fast forwarding just a bit to September, 2008, Melinda has been dancing 6 days a week at the Academy of Dance in San Luis Obispo. Our family is filled with overflowing gratitude to everyone who has helped Melinda. To Dr. Dan Greenfield, Dr. Irma Gonzalez, Nurse Pam, Child Life Specialist Jaynie, the outstanding staff at Cottage Hospital, the Teddy Bear Pediatric Cancer Foundation, The Academy of Dance dancers and teachers, and to our loving family and friends, we thank God for your gifts to us. Each time we see Melinda dance, we’ll remember what you did for her, and we will forever and ever be grateful for what you have done for us.

Photos

My "what I used to look like" look!

My "what I used to look like" look!

This is me dancing between chemo and radiation.  I'm tired, nauseous, and light-headed....but dancing!

This is me dancing between chemo and radiation. I'm tired, nauseous, and light-headed....but dancing!

Antonio, my stuffed gorilla, came with me every day to radiation dressed differently.  Here he is sporting his Cottage Hospital shirt.

Antonio, my stuffed gorilla, came with me every day to radiation dressed differently. Here he is sporting his Cottage Hospital shirt.

Me and the crew from the clinic (from left to right)  Nancy (a.k.a. Zippy), Nurse Pam, Me, Dr. Dan, and Robin

Me and the crew from the clinic (from left to right) Nancy (a.k.a. Zippy), Nurse Pam, Me, Dr. Dan, and Robin

Great Aunt Phyllis and I, fellow cancer survivors with hair sproutin'!

Great Aunt Phyllis and I, fellow cancer survivors with hair sproutin'!

A girl from dance sorta "dared" me to come in the next day with a mohawk.......I did.

A girl from dance sorta "dared" me to come in the next day with a mohawk.......I did.

2008 Arroyo Grande Relay for Life

2008 Arroyo Grande Relay for Life

Just a few of the luminaria bags that lit the Relay track in memory or in honor of someone who battled cancer.

Just a few of the luminaria bags that lit the Relay track in memory or in honor of someone who battled cancer.

I spoke at the Teddy Bear Cancer Foundation Luncheon in October 2008.

I spoke at the Teddy Bear Cancer Foundation Luncheon in October 2008.

I was Marie in the Civic Ballet of San Luis Obispo's Nutcracker in December 2008.

I was Marie in the Civic Ballet of San Luis Obispo's Nutcracker in December 2008.

Photos

These Disney gloves got a lot of use, and they also created many smiles and laughs.

These Disney gloves got a lot of use, and they also created many smiles and laughs.

My fourth and final round, I played "Can't Help Fallin' in Love With You".  There was a piano on the adult floor, and I played for some of the pediatric nurses.

My fourth and final round, I played "Can't Help Fallin' in Love With You". There was a piano on the adult floor, and I played for some of the pediatric nurses.

Nurse Cyndi kisses my bald head before my very last hospital chemo.

Nurse Cyndi kisses my bald head before my very last hospital chemo.

Me and Ricco (my IV pump) get decorated for my last hospital chemo party!

Me and Ricco (my IV pump) get decorated for my last hospital chemo party!

So many "Melinda supporters" came to the party!

So many "Melinda supporters" came to the party!

I had to go back for one last outpatient day of chemo, and to celebrate, I went with a Hawiian theme.

I had to go back for one last outpatient day of chemo, and to celebrate, I went with a Hawiian theme.

This is me and my doctor, Dr. Dan, the greatest guy eva!

This is me and my doctor, Dr. Dan, the greatest guy eva!

One extremely boring day, I discovered stuffed animal wigs+mom's camera=fun!

One extremely boring day, I discovered stuffed animal wigs+mom's camera=fun!

My redhead look

My redhead look

My "the sun will come out tomorrow" look

My "the sun will come out tomorrow" look

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