Research Funding Is Vital

I have many thoughts about how our leaders prioritize funding initiatives in our federal budget.  And much of what I think might seem like ‘common sense’ when it comes to maintaining funding for items that affect health care, while others may think health care spending takes a back seat to defense spending. At the risk of taking any kind of political stand, I’ll just say that I’m always about taking care of the people and their IMMEDIATE needs first.  Day-to-day living.  The link below is to an article written by a couple of months ago by an Atlanta oncologist who asks our law makers not to cut back on the cancer fight.

How do we convince the law makers that maintaing funding for cancer research is critical and necessary for medical advancement and the opportunity to live longer lives?

Research funding vital | Atlanta Forward.

This Q &A is with the former head of the National Institute of Health (NIH) and he explains where the funding dollars go…

My holiday weakness??? Guess…

Santa made me do it…first Reese’s chocolate covered trees, now these! Chocoholic Anonymous send help!!! 

I use the holidays as an ‘excuse’ to eat these. It works right??

sujaggirl on Instagram.

MD Anderson Cancer Center Launches Unprecedented Moon Shots Program

UT MD Anderson Cancer Center Launches Unprecedented Moon Shots Program – MD Anderson Cancer Center.

Wow. This is an aggressive and ambitious approach. Good for them!

The Comfort of Coffee

I know, coffee has caffeine.  But for me, coffee has always been a ‘soothing’ beverage.  I don’t ‘need’ it coursing in my veins to get me going in the morning. What I do need is the smell of coffee brewing. SMELLS SO GOOD!  I think that’s all that there is to it for me. The smell.  See, growing up, my mom and her mom always had coffee in the house, COMMUNITY COFFEE to be exact. That’s the brand we folks from Louisiana grew up on.  

Before these fancy brewers, it was just a jar of instant coffee granules and hot water boiling in a “tea” pot.

The smell reminds me of childhood.

Of brisk fall mornings getting ready for school and knowing mom was making grits for breakfast. And knowing that I was gonna have toast and COFFEE.  Yep, I drank coffee as a kid. Probably explains a lot about me now! But it also reminds me of hot and sticky summers spent at my “Mo-mo’s” house deep in strawberry country in south Louisiana.  She lived at the back corner of a country road, as in not paved. Dirt and rocks.  In front of her house was, of course, a strawberry patch.  I don’t think I realized how good we had it.  Life was slow and easy.  No cable (three local channels, well, a couple more if count the stations we would get out of New Orleans) and definitely no internet or cell phones.  It was comforting.

So when I brew coffee in my cute red and black brewing machine, it’s not really what’s IN the cup. It’s the memories that come with SMELLING what’s in the cup. Sometimes I don’t even finish a full cup. I don’t need to because all I needed to do is smell it to flashback to my great memories of childhood.

I probably had a cup of Community right before this photo was snapped way back in 1976!

Cancer treatment can’t stop bride’s dream wedding

Sharing an inspirational and emotional story about a friend of mine that I’ve known since she was one of my interns when I was working at the NCAA many years ago. She has always been so bright and compassionate and always optimistic.   She has approached her illness with all of those traits and more.  She was such a beautiful bride.  God bless you Maria.  Just wanted to share.  

Cancer treatment can’t stop bride’s dream wedding | Video | abc11.com.

BEING IN THE RIGHT PLACE

I’m typing this through tears…uncontrollable sobs.  I’m such a baby. I don’t know Robin Roberts of Good Morning America personally (though I met her a few times several years ago through work events), but after hearing about her mom passing away late last night I felt like my heart would explode.  My heart is so heavy for her.  It’s only been three and a half months since my mom passed and the pain is as fresh as if it happened yesterday.  So I KNOW her pain.  Add to that, Robin is a breast cancer survivor and she is about to undergo a bone marrow transplant because she has MDS (myelodplastic syndrome, a rare blood and bone marrow disease). And now she is mourning the death of her mom.  Can you imagine what she must be going through?  But through it all she has maintained such grace and joy.

 I think what is so wonderful about the love of God is that He puts us in places where we need to be at the time we need to be there.  Robin left her GMA hosting duties a day earlier to travel to Mississippi to be with her mom who had recently fallen ill.  Somehow Robin knew that her mom didn’t have much time.  She just knew.  Just like I knew when my mom would take her last breath.  God is amazing.  Though it hurts to hear about death and dying, it is comforting to know that God prepares us even when we don’t think we’re ready.  Hurricane Isaac had left Robin’s hometown of Pass Christian flooded.  But that didn’t stop her.  God cleared a path so Robin could get to her mom and hold her hand before she passed away.  Isn’t that amazing?  I just shouted when I heard that she made home ‘just in time’.  God does things like that.  But now her family is dealing with the aftermath of Isaac and their mother’s death.

 Last September, almost a year ago, I decided at the spur of the moment that I needed to drive home to be with my mom.  Two nights prior to that decision, I couldn’t sleep.  I was restless and I was feeling helpless.  Yes, I had recently started a new job, but at that time it wasn’t important to me. What was important was getting home to Louisiana and being there for mom.  Something wasn’t right; it just didn’t feel right.  Mom had been slurring her speech and sounded out of sorts, confused. I was so glad that I had made the decision to go home.  God knew I needed to be there.  A day after I arrived home, we admitted mom to the hospital. She was extremely dehydrated and her blood sugar levels were through the roof; so high that the number didn’t even register on the glucose meter.  After a few long days, mom eventually got better.  All the while I knew that God had put me in the right place at the right time. 

 As for Robin, she has so much faith and love surrounding her that I know she will make it through. But I also know just how hard this journey will be for her.  After she celebrates the life of her mom, she will then have to fight to go through the bone marrow transplant…without her mom by her side. Whew!  Cancer, MDS and death.  What is God doing? I guess He’s trying to bring us closer to him. I suppose he wants us to continue leaning on him.  As hard as it might be, leaning on our faith is what we must do when confronted with challenging situations.  I miss my mom every single day. I talk out loud to her all day long (you don’t realize how much you miss someone until you can’t pick up the phone and call them).  But I know she’s up there in Heaven taking care of me and guiding me to make the right the decisions and do the right thing.  I sometimes throw myself a pity party, but it doesn’t last long because I know mom wouldn’t want me to be there.

 So today, even if you are faced with some daunting circumstances, show some faith and know that God has you in the right place at the right time even when it’s hard. So be still and listen.

Cursing Grief

Grief is a bitch. It is relentless. It grabs a hold of your heart and it twists it until it’s dry.

Grief is a coward.
Grief is a bastard.
Grief is full of sh^&

Grief is a muthaf^*%$

Damn you grief. Kiss my ass.

Now replace grief with lung cancer.

What I Learned From Mom’s Lung Cancer

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.

The last 50 days have been a blur. My mom, Lillie McCarter Conway, died on May 18th. Her fight with lung cancer is over. Her struggle to survive is a struggle no more.

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.

Embracing the Blogging World…One Fearless, Inspirational Story at a Time.

What a view - Birmingham, Alabama

I’ve only been blogging since September 2011, but in that short period of time, I’ve been on a cross-country trip from Canada to California, I’ve learned how to make Tangerine-Pistachio Sticky Buns (haven’t made them, but at least I have the recipe!) and Brandy Spiked Chocolate Eggnog Cake —woooo lawd! (haven’t made that either, but my mouth is watering at the thought).   I’ve watch the sun set in Denmark (beee-u-tiful) and I’ve learned that there is some awesome architecture in Seattle, especially the city’s main library.

 I’ve shed tears over the death of strangers I’ve never met, whose lives were cut short by cancer.  I’ve read about folks who are anxious about job interviews because they’ve been out of the job market for 20 years.  And what about those budding entrepreneurs who start a business with nothing but an idea and an internet connection?  All of their stories are inspiring on so many levels.

I’ve experienced all of this through the words of folks I’ve never met.  Most of them I’m pretty sure I would hang out with or at least meet for margaritas or dessert as most of the blogs I end up reading are written by those who love good books, Mexican food, chocolate and good tequila. Most of my friends love good, soul-tickling, rib-sticking food and those are the folks I tend to gravitate towards out here in the blogging world.   Who out here in ‘blog land’ doesn’t love reading great books and looking for a bargain deal on cute sofa in IKEA or a colorful abstract throw or comforter?

A few of my interests

Many of us deal with the same issues and admit the same fears. I’m afraid of seeing my mom’s health decline because of this stupid, stupid cancer and I fear what will happen when it happens.  And almost all of us are trying to figure out how to deal with clutter, live a healthy life, find time to exercise and set attainable goals.  The Living4Bliss blog (Saundra Johnson) gives us pearls of positive, uplifting wisdom that provides practical advice for handling life’s sometimes unpredictable challenges.  Through her I’m learning that all we really need has been in ‘us’ all along.

More than anything I’ve learned that at the very core of who we are lies the essence of what makes us the same.  We may not all have the same religious beliefs or speak the same native language. But what we have in common, (the need to learn and grow, be prosperous and excel and the desire to love and share happiness) is what makes us the same.  That’s why we are out here baring our soul and sharing our fears with strangers.  How else would you explain it?

I love the Harlem Renaissance

This time last year I would have never shared these feelings with strangers. But my mom’s illness and the overwhelming desire to express my feelings and reach out to others going through the same thing trumps fear.

And I refuse to let fear win. 

Bloggers are fearless.  Bloggers and the lives they live are real, honest and raw.  And I’m proud to be a part of this community. I have finally learned how to embrace this world.

If you’re a blogger, why did you start a blog and what have you learned? Would you do it all over again?  If you knew then what you know now, what would you do differently?

Just Because

The colorful flowers in this post are from my boyfriend Van. He decided to surprise me the other night with flowers and dinner with friends.  He said that lately he thought I’d been a little sad.  And I guess he was right even though I didn’t think I was showing it.  For two days he text my friends about the location and the time all while keeping me in the dark.  He worked hard to pull it off because, well,  if you know me, you know I ask a LOT of questions!  Even though I was a tad bit suspicious, they still got me.  I needed that time with my friends LaShanda and Rod at ONE of my favorite restaurants, Firebirds Wood Fired Grill in Hoover, Ala.  To Van, the flowers were nothing special, but to me it was the meaning behind them.  Though I’m staying positive about my mom’s health, sometimes it gets the best of me.  

Remember that sometimes it’s the small things that make a person feel better.  A quick phone call or a an email of support even when you don’t know what to do or say.  The small things mean the most.

 And in case you’re wondering, the food at Firebirds was excellent as usual.  I got the Cilantro Grilled Chicken with smoked tomato jack cheese sauce, LaShanda had the BBQ Grilled Chicken Salad, Van had the Pecan Crusted Trout and Rod had the juicy cheeseburger.  A great time was had by all!

Pecan Crusted Trout ~ Courtesy Firebirds

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