I’ve had many thoughts and I’ve had a lot to write about in the last few months…I just never took the time to write. My last post was just after the new year…I was thankful and happy that mom lived to see 2012. I was looking forward to her making it to her 68th birthday in March. But after her birthday, things began to spiral out of control. Brain mets returned and started wrecking havoc and her cognitive abilities diminished. So, I had a lot to write about, but just couldn’t make sense of it to put it all down on paper. It was just jumbled up incoherent spasms of words…not full sentences, but sputters of thoughts and pieces, chunks of nothing. So as much as I wanted to and needed to write, I couldn’t. I was feeling too overwhelmed, too consumed.
I left my house in Birmingham on April 20 and I had no idea when I would return. But I didn’t think I would return in mourning. Every 7-10 days for the past eight months, I traveled five hours one way to help care for my mom. I never doubted what I was supposed to be doing. I never once regretted making that drive or resigning from my job. I never once felt like I needed to be doing something else. For that moment in time, I was a caregiver to the most caring person I’ve ever known.
On May 8, mom and I went on a shopping trip to buy her something to wear to church on Mother’s Day. Forty-eight hours later, my mom never spoke directly to us again, at least not in coherent sentences. Her words were just moans riddled with pain. Mom’s rapid decline took seven days. It took seven days for her body to begin to betray her. Seven days of the unknown, of wondering which day would be her last day, Seven days of watching her struggle to breathe. Seven days of watching her fight through the pain meds just so she could fight to stay with us. Pneumonia had set up shop in mom’s body and wasn’t going anywhere.
Though I wasn’t certain of much during those seven days, I knew that when I sat in her hospital room at 1 a.m., May 17, we were entering into a final goodbye. I knew it. I felt it. Late that night, as mom’s breath became shallow and her temperature had risen to 104 degrees, the nurse came in and asked me if ‘they’ had told me that mom probably wouldn’t make it through the night. I said no, no one had said that. For a split second I was angry…how dare she come in here and tell me when mom would take her last breath. But just as quickly, the anger dissipated and I accepted what I had known all along, that mom had less than 24 hours on this Earth. I had decided that I didn’t want to be there when she took her last breath. And I wasn’t there. I was ok with that. I didn’t think I could personally witness her last moments on Earth. I think she was ok with that also. I didn’t need to be there and I don’t think she wanted me there. I had said everything I needed to say to her. I had plenty of memories to comfort me. So, after talking to the hospice nurse who explained that they would be taking over mom’s care, my dad decided he was going home. He never willingly left the hospital, but at that moment, I think he finally accepted that mom wasn’t coming back to us. So he left. And in some way, I think mom was waiting on dad to accept it. He went home, showered, ate and came back to spend the night at the hospital. This was the night of May 17. When he got back to the hospital, it was my turn to go home and shower and eat. But I knew that the next time I went back to the hospital, my mom wouldn’t be alive. I don’t know how I knew it. Maybe mom told me, in her own way.
That night I fell asleep on the sofa at home and slept soundly, knowing that my dad and his sister were keeping watch over mom at the hospital. I slept peacefully, until I woke up at 3 a.m., May 18. I wasn’t jarred awake, my eyes opened slowly and I felt something, or someone gently shake me. I got up and instead of getting in my bed in my room, I got in my mom’s bed. Turned on the tv, put my head on my mom’s satin pillow case and I drifted back to sleep, peacefully. At 4:45, my cell phone rang. It was my aunt. She told me to come to the hospital. And I knew. She didn’t say why I needed to come. She didn’t need to say why. I didn’t cry, I didn’t rush, I didn’t panic.
What would you do if you knew you only had seven days to be with a loved one? If you knew the exact day and time your loved one would die, what would you do until that time arrived? What would you say? What questions would you ask? WHAT WOULD YOU DO? And, how would you feel on that last day? Would you feel as if you’ve done or said enough?
Even after going through all of that with mom, I’m still not sure what I would do. I’ve learned a lot during this time, but here’s one thing I know for certain…when something traumatic happens in your life you become FOREVER CHANGED. I mean, forever. What you thought you knew the day BEFORE the trauma becomes almost insignificant. What you know and learn AFTER the trauma becomes woven in your mind and it’s almost like an awakening. The clarity is almost soothing. Almost. I learned that one person’s normal is another person’s chaos. I learned that little things really do matter. Mom loved Orbit chewing gum, Vlasic pickles, waffle fries from Chick-Fil-A and a good cup of her beloved Community Coffee. Little things do matter. She loved to laugh at silly shows and enjoyed late-night marathons of Everybody Loves Raymond, Criminal Minds, NCIS and Monk. I LEARNED THAT LITTLE THINGS DO MATTER!
A year ago I wasn’t thinking about working in the health care industry and now that’s all I read about, that’s all I can think about. AFTER mom began to lose her cognitive skills I started reading everything I could on brain mets and symptoms…and now I’m fascinated by behavioral neuroscience psychology and how cancer destroys not only the body, but also the mind. Mom could remember EVERY name of every student she taught going back to 1965, but she couldn’t write the day’s date…numbers were confusing and scary. Remembering generations of names was easy, writing out a check for a bill was not. Watching her go through that was difficult. Do all cancer patients go through this, I wondered. And if they do, are these patients surrounded with empathetic and supportive loved ones? My mind started racing with ideas and plans and thoughts of how I could help patients like my mom. This is someone who was THE most organized person on the planet, who never forgot where she put something, who earned a degree in biology and a master’s in counseling. But after the brain mets she didn’t know the difference between the washing machine and the dishwasher or the telephone and the tv remote.
How in the world did this happen? How did we get to this point? And what could I do about it now?
Am I mad that mom didn’t get a chance to participate in a clinical trial that other lung cancer patients participated in? Yes and no. Yes, because if anyone deserved to be a part of a trial it was my mom…someone who respected medicine and research and made it a daily part of our lives. That’s why her addiction to tobacco was such a dichotomy…how can someone who believed in living right and eating right, pollute her body by smoking cigarettes? As I mentioned in a previous post, she began smoking when BIG TOBACCO posted reps on her college campus and they gave out FREE cigarettes. A scientific person by nature, mom KNEW tobacco was bad, but how do you stop an addiction? There weren’t any cessation programs back then. Smoking wasn’t something she WANTED to do. She just didn’t know how to stop doing it. BUT, add to that, the fact that we lived in a paper mill town and my mom’s school where she taught was in the middle of cotton fields. Breathing in pesticides being sprayed by crop dusters was a common occurrence. Mom worked there for 38 years! Our little area of the state is like cancer alley. In retrospect, it could have been a combination of many factors that contributed to mom’s lung cancer. We’ll never know.
But I digress. She deserved to be a part of a trial. But we’re from a small town and there aren’t many doctors there who were recommending trials. I often wondered if they knew about the many trials that existed. Mom went to UAB Hospital in Birmingham in the fall of 2011 and they wanted to examine her original cells to determine if she had the gene, a marker that would identify her particular kind of lung cancer. Researchers had developed a new drug that for this particular gene and the FDA had recently approved the drug. But…mom’s biopsy was never sent from the original lab to the hospital in Birmingham. Or maybe it was never requested?? Who knows? At first I was mad. Mom was disappointed because she wanted to keep fighting. I was reading about all of these trials and I was certain that if mom lived in Nashville or Houston or Cleveland, she would have been a part of a trial. Her circumstances were interesting because she hadn’t smoked for almost 13 years prior to her diagnosis and she had been exposed the the elements I mentioned above. She was into natural herbs and vitamins and believed in supplements (doesn’t matter if they work or not, she BELIEVED in them). So yeah, I was mad because she would have LOVED to contribute to research and she would have loved to help others figure out how to fight this awful disease.
But eventually my anger subsided. Mainly because I truly believe that if being a part of a trial was supposed to happen, God would have made it so. And also because mom wasn’t mad about it, so why should I be upset? So now I have accepted that she played the role that God laid out for her, nothing more or less. She lived (and died) exactly the way God intended.
Now, it’s up to me to continue the legacy. I hope to be able to assist with research or contribute what I’ve learned in this short time. Mom played her part, now it’s time for me to play mine. What I learned from mom is that we go through difficult times because we need to make a change or we need to improve in certain areas of our lives. I had become comfortable in my career in college athletics, but was I making an impact? Was I doing what God had intended for me to do?
No doubt I’m a changed person because of mom’s lung cancer. I was always a compassionate person, but I’m even more compassionate now and I’m even more sympathetic to life’s small challenges. I miss mom every day. But, I think right now she’s looking down and smiling because she knows that she made an impact. She knows now that all of my efforts will be focused on changing the landscape of cancer. Because of my mom, fighting cancer and helping others fight cancer now takes on a whole new meaning.
When something negative or devastating happens in your life, do you ball up in a corner and hide or do you stand up and fight? I’m standing up to fight, like mom. That’s what she would want me to do. Thanks to my mom, I have found my voice again.