Cancer

A diagnosis of cancer affects the entire family.

This is her story.

Two years ago, my sister was diagnosed with stage four breast cancer. 

She was 35 at the time, had a twelve year old son, ten year old daughter, and a three year old daughter. She underwent months of radiation, a double mastectomy and then months of chemotherapy. Six lymph nodes were also affected. 

Just a few of months ago she got the all clear from her oncologist that he didn't need to see her anymore, that she was cancer free. 

She has been having a lot of pain in her hip the last few weeks and finally had a CT scan on Friday. 

It's cancer.

At this point we don't know if it's on the bone or in the bone, if it's metastasized, or if it's a whole new cancer. We know the odds are it has metastasized. We have been hoping and praying that it's a misdiagnosis or just a new cancer that can be treated. Hope for the best and prepare for the worst, I guess.

My sister lives about 3500km away from our family. We do have some family where she is, but no one that is close to her. Her husband's mom died in September and she was really the only family they had. Our mom and our brother live where I do. 

I want so badly to be there, but I just can't right now. We were planning a visit in June but it seems so far away. I want to be there with her right now. She's scared, her husband and kids are scared, I'm scared. She doesn't deserve this. I know that no one deserves cancer, but she really, really doesn't deserve it. She has already been though enough. 

I'm pissed. 

And I'm terrified. 

And I'm so frustrated I can't be there.

The loss of a grandparent is one of the deepest, most profound losses in a person's life.

This is her story.

I ventured out to Starbucks for some hot, tasty coffee. With my school-mode-thinking brain, I drank my coffee deep in thought.

I like coffee. A lot.

One of the reasons I drink coffee - aside from the fact that it has caffeine, and I love caffeine - is that my granny, Ella Mae, drank coffee. A lot. She and my mom (her daughter) woke up early nearly every morning, drank coffee, and talked. This is one of my favorite memories and observations of their relationship. They had such an amazingly strong bond.

My granny lived with us off and on, mostly on, from... I’m not exactly sure what age I was, until her death in April of 1996 at the age of almost 56. I was 10 years old. My memories of her passing are fairly fragmented. Time seems to work like that. The more time passes between a person and an event, the more those memories seem to become fuzzy and fragmented.

I don’t talk much about the days of my granny living with us or watching her wither away due to the chemo and radiation. I think about her quite often, especially when I have my first cup of hot coffee. It hurts more today than it did 17 years ago.

Cancer is an asshole. Cancer is bullshit.

Cancer took my granny at far too young an age. She hadn’t even turned 56. I was 10; my sister had just turned 5, and my brother was just over a year old. My sister has some fond memories of our wonderful granny. My brother? Not so much. He was too young. He only knows what he’s been told. I’m so grateful neither of them remember much, if anything, about her battle with the Cancer. I just wish we could have had more time with her.

I watched Granny lose weight and hair and go between our home, her sister’s home, and the hospital. These are not fully-formed or fond memories. In the last days, it wasn’t my granny talking, at least not much of the time. It was her pain. It was that asshole, Cancer. She fought that bastard for as long as she could. She was strong, but she went home to a far better place than this earthly world. She was and is no longer in pain.

No, I don’t remember those days of her battle with Cancer very well.

I do remember being calm and in shock at the funeral service. I don’t remember crying. None of it felt real. I refused to view her doll-like body lying oh-so-still in the casket because that wasn’t my granny.

My granny was fiery and full of life. She loved her coffee. She hated having her picture taken. She had a tattoo of a single, red rose right above her left knee–that is, if I remember its location correctly. She had dark hair, pale blue eyes, and tanned skin. She loved Sam Elliott, John Wayne, Hawaii Five-O, and Perry Mason. And most of all, she absolutely loved her family.

Each day, I miss her more than the day she left this world. But I know she’s still me with. I see her everywhere, every day.

I see her in my own mom. I see Granny in the ways my mom interacts with her family and friends. I see Granny in my mom’s personality and fiery spirit.

I see her in my sister. Oh, man, is my sister like Granny! That attitude: “Fuck you, I’m me; and if you don’t like it, you can shove it.” I love that!

Certain smells remind me of her. Coffee, especially.

Because of this and so much more, I know she’s still with me.

So, Granny, here’s to you. I love you. I miss you. I remember you. Always.

Part of me feels guilty for having more time with and memories of Granny than my siblings or cousins, but I know that the guilt is unwarranted and unnecessary. She loves us all, and she’d be proud.

Losing a sibling to cancer is one of the toughest challenges a person can face. This is her story.

My sister was always my hero. She was extremely intelligent, talented and beautiful. Standing a full six inches taller than me, I looked up to her in every sense of the phrase.

Our parents split up when I was six and she was nine. From then on, it was the three of us against the world - my mom, my sister and me. Some of my best memories are of the three of us spending time together, talking on my mom's bed. Nothing could stop us!

Most older sisters don't like their little sisters tagging along, but she never seemed to mind. I spent so much time with her and her friends that they all started calling me their little sister! By the time she was a senior in high school (I was a freshman), we were really close. People never believed us when we'd tell them that we were sisters - we always got along so well!

We stayed as close as we could over the years even as life brought us in different directions. She got a degree and began her teaching career. I got married, busily helping to raise two step-sons.

After she was married, we found ourselves on common ground again. Infertility isn't fun for anyone - now we were both dealing with it. Eventually, I adopted a little girl, and my sweet sister was her doting aunt. She came out to see her toddler niece in the summer of 2006.

I remember that she had a cold when she visited.

She'd been sick a lot over the previous months.

Turns out they weren't colds.

A few days before Christmas in 2006, she and I were on the phone. She mentioned that she'd been having a hard time breathing. She told me that she "was so winded that she'd would have to stop and catch her breath halfway up her stairs."

The next day, she and her husband planned to board a plane to spend Christmas with his parents. Instead of the airport, her husband insisted upon taking her to the hospital.

She was diagnosed with pneumonia... but the x-rays showed something in her lung. Scary, but family members consulted the Internet and found a type of pneumonia that included a mass in the lungs. A biopsy of the lung mass was ordered, but the lab was closed for Christmas. Since she didn't have any family history of cancer, the doctors weren't worried.

Christmas in the hospital is not fun, but she made the most of it.

I will never forget December 28, 2006.

The lab results were in.

Mom and I cried as she told me my sister had cancer.

She was 33.

Stage 4.

Non-Smoker.

Lung Cancer.

Because it was such a rare cancer and she was such an unusual case, she became a guinea pig. The doctors tried many different types of experimental drugs.

She took medications to treat the cancer, then medications to control the side effects of her cancer medications, and more medications to treat THOSE side effects. Then, of course, there was chemo.

She took a medical leave from teaching the semester after her diagnosis. Being away from her students was so hard on her. Since she wasn't able to have children of her own, her students were everything to her. She did her best to stay busy, but she was so bored; she couldn't do it much longer.

The next fall, she went back to work, using a wig and scarves to cover her bald head. But the wig was hot and the scarves were a hassle, so she decided she'd be herself with her students.

She bravely walked into that classroom and talked to her students about what she was going through. They loved her for it. Many of those kids felt they could go to her with their personal problems as she'd been so open with them. Her fellow teachers watched out for her and were quick to send her home on the days she was too sick.

The roller coaster was constant.

Sometimes she felt great. Sometimes she felt horrible. Her cat had to be banned when she'd had her chemo treatments because he was getting sick from the chemicals coming out of her pores. Eventually, the cancer spread to her bones.

After the first year passed, things started looking up. The tumor in her lung was shrinking! She flew to the treatment center in Houston, Texas to meet with the specialist there.

She was told her cancer was incurable but manageable. The medications she was using were working and she could stay on them for years.

YEARS!

For the first time since her cancer diagnosis, a doctor - A SPECIALIST - was saying YEARS! We breathed a collective sigh of relief.

A month later, she developed a strange rash.

We didn't know then that the rash, it was the third type of cancer in her body.

Friday, May 23rd, 2008.

She was at work, but was very pale, struggling for air. The other teachers insisted that she go home. She had a doctor's appointment already scheduled that day, and during the appointment she was admitted to the hospital.

I called every day to check on her.

Tuesday, May 27th, my phone rang.

My brother-in-law said I needed to get on a plane and fly out immediately. Many frantic phone calls later, I had a plane ticket and was on my way to the airport. My biggest fear was that something would happen while I was in the air and had my phone turned off. I prayed all day long that she'd wait until I got there.

I finally made it to the airport in the early afternoon. I sat by her side, holding her hand. The doctors had put her in a drug-induced coma so she would feel no pain. There was nothing else to be done.

Just hours after I arrived, her doctor and her husband made the decision to let her go. I held her hand while she took her last breath in this world.

She was only 35 years old.

Through it all, she fought; she was a warrior!

She refused to let cancer stop her from living her life. I eventually learned that she had specifically requested not to be told what her "timeline" was; the "you have ___ time to live." She didn't want to be held back by that.

Turns out, the doctors had originally gave her six months to live. But my warrior sister, she pushed herself and fought her way to 18 months! Even at the very end, she was still fighting.

She's been gone more than four years, and I still look up to her. She's passed the Ultimate Test - the challenge to be a good person. She blessed the lives of her family, her friends, and her students. She no longer has worries of the world, the daily struggles we all deal with. She is no longer in pain.

Now she sings with the angels as she watches over our family. She reminds me to be a good person so someday, someday I can be with her again.

Recovery.

Such a simple word with such a variety of implications, not a one of them simple. 

This month, the Band is focusing upon recovery- from anything. Part of getting through the traumas, the addictions, the mental illnesses is to focus on the light at the end of the proverbial tunnel and focus upon new coping mechanisms, new ways of life, and recovery.

So, The Band, how are YOU recovering? What are you recovering from? How are some ways you cope while recovering?

Part of my recovery and healing has been helping others. I suppose every person who reads, writes, volunteers and comments here on Band Back Together is familiar with this concept as that's what we're doing every day.

An extremist, I've taken it a step further and made it my occupation, so I'm blessed enough to take a paycheck home for helping others.

I've been in full-time ministry for six years, and a chaplain for the past four. Mostly, that means I seek God with other people, listen to their stories, as we all try to heal together with His/Her help.

I want to share one of those stories here:

She was a fragile arm and peeking eyes, a nest of hair on her pillow.

"I'm Joannie, I'm a chaplain, here. Remember me?" I said, as she nodded and wiped tears from her eyes. The slight arm brushed the tangled hair a bit and tears spilled. I sat down close to her and she said, "I'm so scared."

"I would be scared, too. Right now, they are just testing for cancer, they don't know it's cancer yet - but I would be scared, too," I said.

"I feel like a little girl," she sobbed.

I smoothed her sweaty hair back from her face. I felt so helpless; wordless.

"It's okay to be scared. It's a scary thing to hear," I said.

"I did this to myself," she cried. "I'm so scared that God is mad at me. When I was younger... when I was younger, I took a page of the Bible and used it to roll a ... cigarette with."

"Oh, honey," I laughed as I took her hand, "He's a big God. He can handle that one."

"I wasn't as good a person as I should have been, you know?" she said through tears.

"I do know, because no one is. He's the Creator, He's the only perfect One. He loves us anyway and forgives us for all of these things."

"I just think that if I have cancer it's because of what I done to myself, because I wasn't a good person," she said crying and crying.

Fiercely, I said, "That is not true. You listen to me. Bad things happen to good people. Good things happen to bad people. Life is a series of ups and downs, light and dark, joys and sufferings. You did not do this to yourself. This just happened."

She held my eyes with hers, held my hand with hers and we prayed. We prayed that He would shower His love on her and that she would feel His forgiveness and mercy. We prayed against cancer, we prayed for healing and for peace and for comfort.

"I love you," she said to me and my eyes opened with tears of their own. "I love you and I don't even know you," she said.

"I love you, too," I said as I cried with her.

I spend my days praying for the sick, praying for healing, praying for their comfort, for their strength, for God's peace to infiltrate their hearts, for doctors and nurses, for family member's courage.

At bedsides, I seek God as one who should know God. I seek Him or Her as urgently and desperately as those for whom I pray. I speak as one who knows, but I seek humbly as one who doesn't. I speak of the light as one who lives in it, but I live as one who can see it only in the darkness; one who has hope.

In this journey, I am grateful that my Creator has given me these opportunities to serve as I seek, to serve my brothers and sisters who seek alongside me.

I am grateful that as we seek, we know we are not alone.

My niece is turning thirteen in one month. Normally this would be a great birthday filled with fun, friends, and laughter. Instead, Lilian is stuck in her bed on hospice. 

Two years ago she had some leg pain. Of course her parents thought it was just growing pains, who wouldn't? One day she woke up and couldn't walk. Phoenix Children's hospital was her home for the next week. After days of painful tests, they found a mass. Not just one mass, multiple masses.

Lily was diagnosed with stage 4 alveolar rhabdomyosarcoma. Not only was this a horribly aggressive and nasty cancer, it had spread from her foot all the way up to her chest and had attached to her bones. The cancer had been eating away her spine and hip. She was eleven years old.

Immediately they started chemotherapy. They used the most aggressive treatments there are. They implanted a port into her chest so her veins wouldn't disintegrate. She wasn't depressed or really even scared. She was most upset that she was going to lose her beautiful hair. 

After months of this treatment, scans showed the cancer shrinking from the chemo. After a year, she was cancer free. Lily was officially in remission. Much celebration was had. 

Three months later she had another routine scan, there was a new large mass next to her thyroid. Her cancer was back, and it was more aggressive. Since they had used so many types of chemo last time, they wouldn't work this time. They would just make her sick again and maybe give her another year. 

Her parents made the decision to just let her live. They weren't going to torture her with more rounds of drugs that wouldn't even help her. 

They started a juicing diet; no meat, preservatives, all organic diet. She looked so healthy and strong.

Now she is declining. She can't breathe, she has no energy. She can't get out of her bed. 

This beautiful little artist, so independent and strong is dying. This shouldn't happen to a child. 

I haven't seen her in a few months; I can't watch her like that. I need to go see her and spend time with her, but that will make me face that this is real. She may not make it to her thirteenth birthday. 

This should NOT happen to a fucking child. I sit here holding my newborn baby girl, and I hurt for her. I hurt for her parents. 

After these two years Lily finally complained about something. She said she's tired of being sick. My heart hurts.