127 Days

127 Days. From the day her left arm suddenly went limp until the day she passed away my mom lived 127 days. She was my best friend and she was only 59 years old. They think the cancer started in her kidney or her adrenal gland, but we were never really sure. All they were focused on was that it had spread to her brain.

The moment I heard the words “seven tumors in her brain” my life changed forever. I remember the scene like it happened yesterday. I can hear the doctor’s voice in my ear. My mom and I were in the MRI department after hours. They had stayed open late to fit my mom in because her doctor felt she needed to be scanned right away. We had barely gotten her changed from the gown back into her clothes (by this time her left arm and left leg weakness were so severe she couldn’t dress without my help) when the nurse rushed in and said the doctor was on the phone and needed to talk to her. She wheeled my mom into the office and I followed. I watched my mom listen to the doctor on the phone and quietly say “Oh…Oh no. Okay.” I said I wanted to talk to him too, so she handed the phone to me. I can still hear, as plain as day, his voice in my ear saying, “The scan showed she has seven tumors in her brain. You need to go straight to the Emergency Department because it’s after hours and that’s where they will admit her to the hospital. We’re going to do a lot of tests.”

I don’t remember much after that, except sitting at the check-in desk at the Emergency Department while they were talking to the doctor on the phone and sorting out paperwork. I was sitting in a chair and mom was sitting across from me in a wheelchair. I had been holding it together really well all day (about nine hours at this point), not wanting to let mom think I was worried. Wanting her to think I was 100 percent positive that whatever the upcoming battery of tests showed, we would get through it and she would be fine, but exhaustion and the enormity of it all finally caught up with me and tears started rolling down my cheeks. She looked at me, exhausted, and chuckled as she said, “I’ll be alright”. I chuckled back, “I know. I’m just tired. And hungry.”

We were both scared and both trying to reassure each other. That’s how we were. We were a team. It had been mom and I together against the world since I was nine years old. In fact, whenever we heard the Helen Reddy song “You And Me Against The World” on the oldies radio station we’d shout, “It’s our song!” and goofily mimic the opening and closing of the song where Helen and her daughter are talking. We weren’t making fun, we really did think it was our song, but we had to do the voices. Goofy voices was part of our schtick. I’ve heard it on the radio once since mom passed away and that time I cried as I sang along. Now the lyrics, “You and me against the world / Sometimes it feels like you and me against the world / And for all the times we’ve cried I always felt that / God was on our side / And when one of us is gone / And one of us is left to carry on / Then remembering will have to do / Our memories alone will get us through / Think about the days of me and you / You and me against the world” suddenly had an entirely different meaning to me. Sure, I knew someday I would be without my mom, but I thought I’d be in my 70s then. Not 36 years old. My mom even said several times as she was struggling to walk or get in or out of the car, “I didn’t think I’d go through anything like this for at least twenty more years!”

Mom started brain radiation the day after Labor Day. With no use of her left arm (she was left handed) or her left leg, it was a huge undertaking to get ready to leave the house. I helped her put in her contact lenses, put on her makeup, fix her hair, and get dressed. All this took more than two hours, because she needed to rest on and off throughout. Then I had to help her get down a flight of stairs and walk to the car without falling down. This was frustrating on both our parts. She was very independent and didn’t want to need help. I was very protective and didn’t want her to break her neck. I know I said more than once, “Hey! What part of ‘Wait for me to get out of the car and get to your side to help you.’ sounds like ‘Get out and start walking on your own.’?!? Slow down and wait for me!”

This went on for as long as mom could stand it. I’ve never seen anyone so sick in my life. She couldn’t keep anything down, she only got out of bed to go to the bathroom and to get her there I had to walk behind her holding her up under her arms and helping her walk by kicking first her left leg out in front of her with my left leg, then her right leg one step at a time while she held onto the walls with her right hand. All she wanted to do was sleep. She said it was a kind of exhaustion you cannot even imagine. After awhile I just couldn’t get her to go back for her next treatment. The prospect of all that work to get ready for a bumpy car ride to a place where you were going to be fitted with a mask that conforms to your face and bolts you to the table so you can receive a treatment that makes you miserably exhausted and sick was just too much for her. So, I called and canceled her next appointment, and then the next, and the next. The nurses kept telling me I had to get her to come in. “What was I supposed to do”, I thought, “force her into the car?”. She was a very independent adult who made her own decisions and nobody was going to tell her what to do. Not me and certainly not the doctors. If she didn’t want to go in, she wasn’t going.  She never liked to take any medicines, because her body always reacted strongly even to small doses. So, she wouldn’t take the medicine she was supposed to take to help with the radiation side effects. This only made things worse. I got so frustrated. We argued about it. Then I looked at her lying there in her bed, so miserable, and thought, what am I doing? She is an intelligent, 59 year-old woman, perfectly in her right mind. She is my mom and my best friend in the entire world. I should not be arguing with her. I should be supporting her. No matter what. If she doesn’t want to take any medicine or continue with treatment, then I am behind her 100 percent. I would rather have her as herself for a shorter period of time than have her be miserable for a few extra months. So, we talked about it and I canceled the rest of her treatments. I admired her for her brave decision and told her even at my age, in her situation, I would  follow the same path. Then we set about trying to make things as normal as possible.

The effects of the brain radiation eventually wore off. She was still bedridden, but at least she sounded like herself again. For the time she was still able to be alone as long as she had everything she needed within reach, I went into work half-days. When she needed more constant care, I, thankfully, was able to work from home. I spent the days sitting next to her in her bed while I worked on my laptop and she watched tv. We had a shorthand for when she need things like her water, or a kleenex, or the remote. It got to the point where I would hand her things before she even asked for them. We had always known what each other was thinking without saying it, that’s what made us such a good team at board games, and spending 24 hours a day together only enhanced that telepathy.

She didn’t eat anything more than one miniscule bite of food a day, some days eating nothing at all, for a total of 98 days. I tried to give her food that would interest her, but she said she just wasn’t hungry. Sadly, I watched as her body slowly whittled down to literally skin and bone, and I marveled at how strong she was. When she eventually got to the point where she no longer wanted water either, I knew we were down to just a few days left together. As hard and as scary as it was for me to let go of her, I knew it was time. She was in a horrible amount of physical pain, and I was in a horrible amount of emotional pain watching the person I loved more than anyone else in the world, the person I had seen nearly every single day of my 36 years on this planet, suffer so greatly, yet so bravely. She never wanted to talk about death. She never said, “oh, woe is me”. Not once. We simply lived each day as it came along.

After she passed away I tried to remember the last thing she said to me. Then I remembered the day before she died, during a few moments of clarity amongst what had been hours of confusion and slurred speech, I had asked her if she wanted to try the medicine the nurse had given me to help clear mucus from her throat. I was expecting only a shake of the head to indicate no (she didn’t like medicine, remember), but instead of a shake of the head she made a concentrated effort to speak slowly and clearly, so I could understand her. She said, “Don’t you worry about me. I am juuuust fine.” and she smiled. I knew that message was meant to be about more than just medicine.

As I write this it has been one month since she passed away, December 18, 2012. I’m getting along fine, but in a way it still doesn’t seem real. Every day something will hit me and I’ll pause and say, “I can’t believe my mom is dead.” At first, I probably said it 50 times a day, today I probably only said it 20. I’m sure soon I’ll only say it ten times a day. And that’s progress.

Sometime I think I will write more about her illness. There are some things that I want to remember. There are some things that I don’t want to remember, but at the same time don’t want to forget either. And, there are some things that replay in my mind over and over like a flashback I desperately want to shut off. Then I remember mom is in Heaven, healthy and walking and talking with my Grandpa, her dad, who we both loved and missed so much. God is watching over her and me and that puts us both at peace. We don’t always understand God’s plan, but he has one for each of us. His plan for mom and me was for her to take care of me for 18 years, for us to take care of each other for 18 years, and for me to take care of her for 127 days.