Her Story is My Story (3)

She came to Atlanta to visit at the beginning of August. She was tired, but still what I would consider normal. She would nap when Sidney napped. We went to the zoo, had fun lunch dates and went to bed early. She was here for a week.

The counselor at MD Anderson called me in September. My mom had been in the hospital with pneumonia for a week. She never told me. I couldn't go to her living in Atlanta with a baby, and she knew I would try to come. (Children weren't allowed in the hospital for the protection of the patients and their compromised immune systems.)

She never left the hospital.

"Baby, it's over."

We had never talked about what the end was going to look like. Stupid, I know. I had asked my mom if she had filed the power of attorney paperwork when she was at my home in August. She had assured me she had, but that is all we talked about. There was no discussion about "end of life care".

When the counselor asked me when I was prepared to pick my mother up to begin hospice care, I was dumbfounded. I couldn't take care of her! We had just moved to Atlanta four months before. I had a 18 month old baby. I did have a single person in my local support system. I still got lost driving to the grocery store, my child didn't have an emergency contact in her preschool file for goodness sake! I couldn't become a care taker.

My mom had not been entirely honest about the state of her condition. I called my brother, and we had a conference call with a counselor and mom's medical team at MDA. She was showing signs of brain tumor progression- manic, hallucinations, mood shifts. Her pain was substantial due to a tumor in her spinal column. Her mobility was limited.

She was just here in August! I knew that her joints hurt when she walked, so I purchased her the sassiest canes I could find. She said they worked great, helped so much!  How was this the same person we were discussing.

That's how she fought her battle. No one knew how bad it really was. She was always going to beat it. Her brain tumor margins grew, but her lung tumors were smaller. It was always a victory. Cancer was her greatest act.

My brother flew to Houston to get her on a plane to Atlanta and clean out her home in Houston near the hospital. A friend flew with her, I met them at the airport curb, and the friend turned around and flew home. She arrived on a one way ticket with a suitcase, a soft purple lap blanket and her canes. Ready or not, I became her caretaker.

Her Story is My Story (2)

Cancer is scary. It's a word you don't want to think. It's a subject that is difficult to talk about. Cancer is ugly. But sometimes it's not. Sometimes it makes you love harder and see things more clearly. And sometimes, well, sometimes cancer is what it is. A dark, lonely place.

By nature I am a fixer, a problem solver. Growing up, I was often the parent in the relationship with my momma. I became her child when she was very young, and as a mother myself now, I understand a little bit better. As a college student working full time and attending school full time I bought my mom a health insurance policy when I found out she didn't have one. She was someone that, for whatever reason, you wanted to help. I always wanted to save her from a very young age. A cancer diagnosis was no different.

She called in the middle of my 5th period literature class I was teaching to tell me her pathology results. If you are a teacher, especially a middle school teacher, you know that you can not answer your phone in the middle of a lesson. My ringer was never on. That day it was, and when I saw it was her calling in the middle of the day I excused myself to answer in the hallway.

She could barely get the words out. She didn't have to. I knew.

It's one of those moments that I can watch play out. The red student lockers lining the hallway. The industrial greige carpet. My present self wants to remind me to breathe.

Immediately I go into control mode. I've got this. I'll fix you. You have cancer? I'll get you another opinion. I'll fix you. I've got a plan. Or I will.

I'm carrying a child in a high risk pregnancy. You have a class of 30 thirteen year olds behind that door. Pull your shit together. Wipe your eyes. Tell your momma that you are taking care of it. Go back in there and finish that lesson.

I'm really (probably unhealthily) good at taking control of a problem. I like to be in control, which might be a problem. I was going to fix this.

After school let out, I was on the phone with her Abilene oncologist. I needed specifics. I needed to become the expert. It wasn't good. The diagnosis was terminal. I wrote down notes that I don't remember hearing. I remember thanking the doctor for his time, and he told me that he was sorry.

Phone calls were made to Cancer Centers of America and MD Anderson in Houston.  Calls were made to insurance. I was going to fix this.

When she made her initial appointment to the MD Anderson campus in Houston, we thought her tumors were localized in one lobe of her left lung. Localized. Simple.  Remove the lung. After the hours of appointments, we were told that the cancer was metastatic. It was found in her lung, diaphragm, bones, spine and brain. Her doctors were questioning how she was still alive let alone living a normal life.

The game plan was no longer to cure her but to prolong her life. They said 6 months at the most. She went through two courses of full brain radiation, multiple chemo rounds, gamma knife radiation and two experimental studies. She lost her hair, grew some back, lost it again.

She would call me and tell me that she couldn't do it anymore. She was too sick. She was tired. I would tell her that she could quit at any time. No one would blame her. We would understand. She fought hard.

Actually, when I told her she could quit, her response was the same every time.
"Fuck you."
And then she would keep fighting. Until there was nothing left to take into the ring with her.

Her Story is My Story (1)

"Baby, it's over."
"What's over, Momma?"

In the past few months I had grown used to getting panicked random phone calls from her. Many not making sense. "Momma, pull over to the nearest crossroad and tell me the address. I'll get you home." "Momma, I need to know your hospital schedule for the week, so I can make sure you have transportation." "Momma, I'm emailing you your dinner delivery schedule. Please make sure you go to your gate at 5:15 to pick up your dinner. Yes, I know that little diner you like. Yes, I remembered to ask for extra ketchup. Please try to eat something, Momma."

"Baby, it's over."
"What's over, Momma?"
"They are dismissing me. There's nothing left to do."
"What does that mean, Momma?"
"It means I'm going to die. I'm done."

Over the last two years we knew she was going to die. Two years prior she was time stamped with a six month expiration date. Two years later she was done. There were no more trials to apply to be a part of, no more experimentals, no more Avastin and esophageal blisters. No more first thing in the morning phone calls holding my breath hoping that she answers so I knew she hadn't died over night.

When she was first diagnosed, I was pregnant with her first grandchild, a grandchild that she wasn't supposed to have given my health issues. For the first trimester of my pregnancy, she was cancer free in theory. We didn't know. We didn't know for what her doctors at MD Anderson think was at least 15 years. To say she was excited to be a grandma was quite the understatement. She was that lady who carried around the ultrasound picture of the chicken nugget blob and showed the grocery store checkout clerk. By the time she was diagnosed in my second trimester with neuro endocrine carcinoid tumors, I was just praying that she lived long enough to meet my child.

They said six months at the most. Clearly her medical team didn't know who they were treating. This lady was frustratingly stubborn and charmingly hard headed. She wanted to meet her grandchild, so she was going to meet her grandchild.  And she did.

Today I Can't Hear Her Laugh

Some people don't like to acknowledge a date of death.  I get it, trust me.  October 29 is a weird day.  My goal this year was to not be sad.  I have a few years under my belt.  But then today, I couldn't hear her laugh when I thought of her.  And I'm trying so very hard.  I can hear her try to read a menu at a Mexican food restaurant using her Yankee accent, even though she had lived in Texas since 1983.  I can even think of her smell and still know what it was like.  But I forgot her laugh.  She had a great laugh, I remember that.  I hope it comes back to me.  Sidney will never know her laugh or have memories to forget, but she really likes to hear stories about my mom.  And, I don't want to forget.

I've started writing them down, so I remember.  Stories and little things- her favorite color of lipstick, the way she could peel an apple in one long strand of peel, the recipes she used.  I want to remember, and I want Sidney to know.

So, my friends, here's where I need your help.  If you knew her, or knew of her, or just made an observation from her picture, could you write it down for me.  Because I don't want to forget.  And, on October 29 I would like to honor her.  xo

damn it.

two in one week.  two friends were taken by cancer within the last week.  two friends completely unrelated in circles to one another died.  from cancer.  in the last week.  damn it.  i will never understand.  i rejoice in the success stories.  in the winners circle.  for the lucky ones.  i am faint to use the word "blessed".  because i don't think my mother or bob or becky were not "blessed".  it is the luck of the draw.  and i don't know how you pull the golden ticket.  i wish with all of my heart that i did.  instead of doling out advice on how to rid the esophageal tract of chemo blisters or recipes to increase white blood cell counts or where to buy the warmest, yet still stylish, millinery for bald cancer heads... i wish i could hand out the lucky numbers for the cancer lottery.  but i don't have them.  and i don't understand.  and it's days like these... two in one week... that i would really like to know why.  tomorrow i will go back to giving cancer advice.  real advice, like what do you do when they can't stop vomiting blood (watch the color carefully). or whom do i call when insurance says they won't pay (i've numbers for you to call).  or my mom is stubborn and won't let me drive her to oncology appointments but she isn't safe to drive (i've got your back on that one too.)  but for now, damn it.  damn it all. 

You've Gotta Have a Villiage

Because here's the thing, y'all. Let me let you in on a little secret: this parenting gig is no joke... And there's no manual. You need a hope, a prayer and a Villiage. My Momma Villiage saves my rear all of the time. They are a group of beautiful faces and even more lovely hearts. They come bathe your kid when you are literally crawling across the floor over piles of (clean, thankfully) laundry because you are clumsy and broke your toes. They drop off a kind note and a mani/pedi gift certificate when the volunteer position you took on becomes a full time job. They send a funny text message that makes you laugh and cry at the same time, because you're knee deep in kid and dog puke and you can't have a drink because it is only 9 am. You need a Villiage. When your kid wakes up with newly discovered sensory issues and won't wear underwear, you need a Villiage. When your kid seems to be having an allergic reaction to a chicken and you can't administer an antihistamine while holding your other goldfish toting baby, you need a Villiage. When it all just becomes too much, you need a Villiage. When no one else wants to hold Merv the Rooster and his five inch claws, you need a Villiage. It's good to sit back and know that we are all in this together. That no matter what, we are a Villiage. xxoo

i miss her.

Sometimes I miss her so much I can taste it. Like every part of me misses her so much that my senses overload and I get dizzy and can taste the ache of wanting her here. I miss her all of the time, but every once in awhile I miss her that much. It's usually in the quiet times, like now, when I'm slumber partying with my tiny girl and I just want her to know how funny and smart and fun and lovely her granddaughter is. Because I know they would've adored each other.  

Once I went and read her charts from MD Anderson, and over and over it was written that the patient was not afraid of dying. That her biggest regret was knowing her grandchild would never know her. So she had to keep trying. Experiment after trial after experiment until there was nothing left to try. I threw the charts away. 

Here's a neat thing about being a grandparent. In a way you get a second chance. She wasn't the perfect parent, but I know she loved me. And I know, even without saying, that she deserved her do over. She would have made an amazing grandmother. 

Right now I can taste it. I miss her so very much. And why do I share something like this? Because it keeps her real. Because I know that there are friends out there who absolutely get it and they need to hear a 'me too'. That most days you are ok, but some days you are not- even after two years. And that's ok too.