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I love participating in charitable walks. I love the idea of masses of people coming together, donating their time and money for a cause that is important to them. I have walked for Huntington’s Disease in honor of my oldest sister’s in-laws who are suffering with the neurological disease that is unfortunately hereditary. I have walked for childhood cancer in honor of one of my student’s baby sister who was diagnosed with kidney cancer at the age of one after an x-ray was looking for pneumonia. I have walked for lung cancer in memory of my mom.

The way I stumbled across the Free to Breathe walk was a Google search one late evening in bed. My mom had been diagnosed a couple of weeks and the idea hit me; I need to form a team in her honor and get people together for lung cancer research and awareness. In two hours, Clan Diane was born. We had our own webpage through Free to Breathe that people could donate and sign up for the team. I couldn’t wait to tell my mom because I knew she would be flattered. I wanted her to see the good out of the ugly cancer that had started to shave time off her life. Due to her illness, we were given an opportunity to raise awareness of lung cancer by telling my mom’s story.

My mom’s boyfriend was able to network with his company co-workers and friends to bring in a lot of money. It was thrilling to log in and check the donation page every day. I became addicted and started to get a little rush, sort of like gambling, every time the number went up. I was a little occupied with my mom’s situation, which took all of my concentration, so I couldn’t really focus on raising money. I was too worried about when her next doctor’s appointment was, where it was, who we were seeing, what floor of the hospital it was on, what time did we need to get there, whether or not she could eat. My mind became numb to everything else except my mom and her needs. It was kind of like a mind vacation from all of my personal needs and it actually felt nice to only focus on my mom, her needs, and our relationship as mother and daughter. Plus, I really loved seeing her every day. It had been seven years since we did that.

The walk was scheduled for end of September so I told myself not to worry about the walk until August. I just couldn’t donate any more of my energy; I was starting to run low. August quickly approached after a long tiresome July in the hospital involving my mom’s emergency surgery on her heart.

During the first week in August, my mom and I sat on the hunter green and maroon floral couch in the sunny living room, mom a little lethargic, I a little wore out. By that time, I quit working a 9-5 job and worked solely on my mom. I was also trying to mentally prepare myself for student teaching which would be starting mid-August. I had no idea how I was going to take care of her, student teach, and advocate for the walk all at the same time; but I knew it would all work out somehow. While we sat there on the couch, heads on each others’ shoulders, my mom picked her head up, looked at me with slatted eyes.
“Are you still doing the walk?”
“Oh yes” I said.
“When is it?”
“September.”
“Hmm” was all she said. I knew she was wondering the same thing, would she make it?

She didn’t make it. My walking in honor of my mom turned into walking in memory of my mom. Now I am the chairman of the Free to Breathe event in Kansas City planning the race/walk for 2012, still in memory of my mom. And yes, Clan Diane will be there with bells on.

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I have always been raised loving music. My dad is a well known musician in our community and surrounding communities. My maternal grandfather was also a well known musician. My dad’s family still owns a music store, repairing stringed instruments.

When the radio is on the car, I’m in control. I love every song on the dial and know every word; old and new.

“Ooh! This is my favorite song! Turn it up!” I yell every time I’m in the car.

“Every song is your favorite song,” my husband reminds me.

Although this may be true, there’s a great explanation for why.

My mom loved her radio and blasted it every time I was with her. We always had “favorite” songs. During one summer in middle school, my mom’s favorite song would come on and the very next song would be mine. It happened several times. We would giggle with joy, crank the volume, and sing our hearts out; windows down and all. The passion for music only grew as I got older.

Since mom has passed, I have been hearing nothing but her favorite songs on the radio. I tell myself its how she connects with me down on earth. I know she has no control over the radio stations and what they play, but it sure seems ironic that all her favorite songs are constantly being played on the radio; or she just had great taste in music.

The most recent song I heard in the car was called “What’s Up” by 4 Non Blondes.

Mom would always belt out, “Hey yea a yeaaa, hey yea a yeaaa, I said hey, what’s going on?!

This song made another appearance while I was driving my mom and my aunt from Texas to a nearby hospital to be with my maternal grandma as she underwent brain surgery to remove a 3.3 cm tumor behind her right eye. My mom was very advanced in her lung cancer at that time and her color was starting to change from an Indian tan to a pasty gray. All worries aside, we headed to the hospital, when “What’s Up” came on the radio. All three of us belted out, “Hey yea a yeaaa, hey yea a yeaaa, I said hey, what’s going on?!” Brought goosebumps to my arms; it was magical.

Although my grandma’s five hour surgery went perfect, my mom’s heart began to race half way through the day. Luckily we were at a hospital, so we just wheeled her down to the ER. It was there they discovered fluid around her heart. Little bits of her 9.9 cm tumor at the top of left lobe was moving and irritating the sac around her heart forming fluid. When she arrived at the ER, her heart rate was 174. The normal is 50-100. They dismissed her from ER after monitoring her for five hours. I put in a 14 hour day that day at the hospital. Head throbbing I brought my mom home to rest.

The next morning, her home health nurse stopped by to drain fluid from a catheter that stuck out in between her ribs on her left side, that drained the fluid from the sac around her lung. The nurse took one look at her and her vitals and called her oncologist. I drove my mom to the ER immediately. It was noon.

I left the ER at midnight when she was finally wheeled to a room. All I could think about was going to bed so I could get back there as soon as possible. I put in a 12 hour day at the hospital.

Due to the exhaustion, I over slept and made it to my mom around 11 am. I walked in, laid my bag down that housed books, magazines and snacks, and walked out straight to the nurses’ station. Something was wrong.

“Can I speak to the nurse for Diane Terry?” I asked the nurse at the desk.

A woman peeks her heard from around the counter, “I am, is there something I can help you with?”

I swallowed my tears and began to describe what I saw. “Is she on some new meds? She is acting really drugged and lethargic. She could barely open her eyes to talk to me. Her breakfast is still there, which shows me she is not eating. Can you just tell me what’s wrong?”

“Well, aside from a high heart rate, her vitals are steady. It may have been from the sleep aid that was given her early this morning.”

It may have been? “Okay, well I don’t think she should have that anymore, because she can’t even function as a person. Just last night she was sitting up in bed talking to me, now she can barely open her eyes.” I left in a flurry and headed back to her room, where I found her just the way I left her; asleep.

I curled up in the chaise lounge with a book and a blanket and tried to read. I read the same pages over and over again because my mind was with my mom, not in the story. I kept thinking about her behavior and how it was so much different than yesterday. Fed up with the nonsense in my mind, I called my dad’s sister-in-law who is a hospice nurse to ask for her advice on what I should do. I felt like the doctors didn’t understand my nervousness.

“Jessie, if it were my mom I wouldn’t leave her side. You need to talk to the nurse about staying the night with her.”

Settled; I was staying the night. I immediately called my mom’s boyfriend and her sister from Texas who was staying with them at the time, to tell them to come stay the night with me, it doesn’t look good.

Because it was the weekend, no one could do an EKG on her to get an idea of what was going on with my mom’s heart. They had received the images taken by the ER at the other hospital and were aware that there was some fluid around her heart.

I didn’t sleep a wink that night. I put together two chairs and some pillows to make me a comfy spot right next to my mom, my head at her feet and my feet at her head. My mom’s boyfriend and her sister from Texas each slept in a chaise lounge that pulled out in a bed. As they snored along with the humming fan, I sat there and stared at her, watching her breathe. Every once in a while she would open her eyes and reach out her hand to me; I would lean up a little to squeeze her cold, long skinny fingers. I swallowed large crocodile tears that tugged on my hangy-down-ball-thingy not wanting to give up the fight.

As she held on to my fingers, she would moan and gently move her head, still not opening her eyes. I felt that something was wrong. I leapt out of my cocoon of blankets and pillows and ran outside into the hall where her heart monitor was posted. Her heart rate had shot up to 161. I ran, not walked, to the nurses’ station to get help. She was already on her way down.

“I paged the on-call doctor, he will be down soon,” she said in a very calm smooth voice; she sensed my anxiety.

The on-call doctor stuck mini circles on her chest with tape, hooked up to a heart monitor that rested on the table next to her. Several times throughout the night, the monitor beeped loudly as her heart rate shot back up to the 160’s and then back down to low 100’s. Mom would moan gently, but never work up. I never slept.

The next day was the busiest and most stressful day I experienced at the hospital with my mom. Running on no sleep, I was beyond drained. I had managed to hold back any emotion in front of my mom. At that point my aunt from Texas called relatives in the surrounding areas to get to the hospital to see my mom, things were not looking good. As the room filled with family, I slipped out for some fresh air.

After the EKG, heart surgeons talked to us about conducting an emergency surgery sometime that day to put a catheter in the sack around her heart to drain the fluid. I was mortified.

“Can we talk in the hall?” I asked them. My mom was a nervous-nelly and did not want to know anything about her condition. I had to sneak around and speak to the doctors away from my mom so as not to worry her. As I listened to them explain the surgery and the severity of her condition, my mom simply covered her face and cried silently, agreeing that she should have the surgery. I sat there in silence fighting back fear and emotion. I was furioius.

When we got to the hall, it all came out. “I don’t think my mom can handle the surgery. She hasn’t eaten in four days and is very weak. Is this really necessary?” I sobbed and shook as they again told me how serious her condition was and that they needed to operate. The conversation got so intense that we had to find a break room where we could discuss the situation in private. I was convinced she would die in surgery. I knew she was getting close to death, and I just wanted her to pass peacefully at the family home in the country where she wanted to pass, and not during heart surgery. At the end of the conversation, I was unclear if they were going to conduct the surgery or not. So I left my mom with family and once again stepped out for fresh air.

While I was outside, my sisters arrived with my paternal grandma carrying pizza, sheet cake, cookies, and veggies. These are my half-sisters as I am my mom’s only child. We ate as I described what happened after the EKG. They agreed with me that this was a far too risky operation.

After I fueled up, I walked into my mom’s room to find her being prepped for surgery. I was beyond shocked.

“What? MOM! Really? You agreed to the surgery?!” I voiced my emotion for the first time in two months, since the doctors found the tumor.

“Well, Jessie! What do you want me to do?! Give up?! I’m not ready to die! I’m having the surgery!” My mom screamed at me the best she could, finally voicing her emotion since she arrived at the hospital four days ago. I sat in the chaise lounge, arms folded, tears rolling down my cheeks, and I pouted.

I followed her down as they wheeled her to the surgery floor. I sat in the waiting room choking back tears, imagining how pitiful I must look. Make-up cried off, bags the size of suitcases, hair a greasy disheveled mess. I was heart-broken and numb.

They finally called me back to sit with her as they prepped and got her ready for surgery. I just sat in silence in a chair so close to the head of the bed, my mom couldn’t see me. I cried silently, angry at her for doing the surgery. At that point I had been at the hospital for 28 hours and was not thinking clearly. I wasn’t taking into account that mom should at least attempt the surgery and have faith that she would pull through.

My mom tried to remain perky as they asked her questions and talked to her once again about the surgery.

“You don’t think I should do this do you?” She asked me in a hushed voice.

“No, mom I don’t. I have a bad feeling you won’t make it through. You already can’t breathe and they want to put you fully under for this surgery. It’s not like the other one for your catheter, this one you are fully under.” I started crying hysterically.

“Oh doodlebug.” My mom cooed as she held my hand.

The surgeon defended me and told my mom there were great risks and it was normal for me to have this fear. As they wheeled her out of the room and down the hall, we held hands and locked eyes until I couldn’t go any further. I don’t know who was crying harder, me or my mom.

The waiting room slowly emptied as I slept on a hard stained couch. When I awoke, my husband, pastor, and my mom’s boyfriend were with me. We tried to carry on conversations, but the effort wasn’t there. After a couple of hours, they came to get me; she had pulled through but was going straight to ICU for monitoring.

The nurse that led me to the ICU was the same nurse that had helped my mom through all her surgeries she had within the past month. She was a middle aged woman with short silver hair that was just coming back from her stint of breast cancer. She had won her battle, and worked everyday helping others fight theirs.

Before opening the door to ICU she took my hand, looked me dead in the eye and said, “Your mom is very sick sweet heart.”

“I know,” I mumbled, through wet lips, salty from tears. “I just don’t want anyone to sugar coat anything anymore. It seems all these doctors tell me what they think I want to hear. But I don’t want to hear sugar coated lies, I want to know the truth.” I told her trying to sound confident.

“She has a few weeks Hun, she’s very sick.”

“What about chemo?” I asked, alarmed that my mom would never be given the chance to even fight her cancer with chemo.

“She’s too weak for chemo. Her body won’t respond to it like it should. I’m sorry.” We hugged and she led me through to my mom.

Her bed was large and up high. The whole back of the bed was attached to tubes and monitors that were lined above her head, hanging from the ceiling. It was like an outer space sleigh. The ceiling was painted in an undersea scene. I felt like I was there because I kept her a bubbling sound, like a fish tank. I sat next to my sleeping mom and investigated what I saw. I had become a pro at looking at the medical equipment in order to get an idea at what the numbers meant. I had discovered what her normal numbers were for pulse, heart rate, oxygen level, and blood pressure. I watched those monitors like a soap opera memorizing every change and fluctuation. Her numbers were not the best. I also noticed a large, about the size of a quarter sea-green tube that ran out from under her gown and blanket, to a gentle vacuum at the foot of her bed. The water bubbled and made a gentle vacuum that drained the bloody red fluid from her heart. That’s where the undersea bubbles came from.

I grabbed her hand and she opened her eyes.

“You did it mom, you made it through!” I said calmly and full of tears.

“Mmmm,” was all she could say as she fell asleep.

I barreled out of there and allowed my other family members along with my pastor to come in and see her. She was more awake for them and was able to talk to them a little. My husband said she was adorable because she really didn’t make sense. She looked like a little girl in her dad’s big bed.

I asked her later if she remembered seeing pastor.

“I remember looking at his eyes, and I think I told him I loved him,” she laughed. She remained playful and cute throughout her journey with lung cancer.

That night ended just before the sunset, giving me a 32 hour stint at the hospital; my longest. My husband and I laid in bed and watched old black and white movies. Our drained minds couldn’t handle anything with a confusing plot or fast moving pictures; the simpler the better.

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