Commitment vs. Devotion

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UncleJerry&AuntDonnainDoorway

I was a child when my uncle Jerry died. I remember him through that lens… they are all fond memories. He was the jokester in our family, always ready with a harmless prank. And they were harmless, that was part of the appeal. You could trust him. He didn’t go too far.

He was a successful businessman and well loved in the community. He died of a massive heart attack at age 44. His funeral is one of the first I ever went to. Watching my grandmother and aunt (his wife) deal with his loss was my first real lesson in grief. There was no crazy wailing, although I’m sure  they wanted to rage out. My aunt was fairly stoic. Not cold, just stunned. My grandmother cried, and I remember a cousin telling me that she heard our grandmother say, “I just want you to open up those big blue eyes and say, ‘Mama’ “ as she stood over his coffin.

If there was a family member who didn’t cherish him, I was unaware of it. He was my mother’s brother, and I guess in some families my aunt might have drifted away, but not in ours. She was a fixture at my grandmother’s house for decades – until my grandmother died.

When I got a little older, my aunt would often include me and my cousins in trips to her beach house. (She was not the only generous family member who did things like this, but this is a story for her.) I learned how to fold a fitted sheet on one of those trips. I ate cauliflower for the first time. I had a sundae with both chocolate AND caramel on it. The best kind of memories were made.

At some point, years after my uncle had died, I asked my aunt why she wasn’t dating. She was so fun and such a vital person. She told me that my uncle was the only one for her, and then said, “Do you remember his laugh?” She had such a great smile on her face when she said that, and I kind of knew then that what they had couldn’t be replaced. She might find a substitute, but she was content with her memories of him.

As it turns out, she never married again. I think she has been happy. At least she always seems that way to me. Her two daughters gave her lots of grandchildren, and she has always remained as active as her circumstances would allow.

I thought of her this morning. Of her relationship and the example she set with how she has lived her life. And it came to me that she was in a devoted relationship with my uncle. So many settle for “committed”, when we should really wait for devotion.

What’s the difference? Well, the dictionary says that committed means “to pledge (oneself) to a position on an issue or question; express (one’s intention, feeling, etc.)”.

By contrast, devoted means, “zealous or ardent in attachment, loyalty, or affection.” (Don’t confuse this with obsession… that’s a whole other story.)

But to me, devotion is when your unconscious thought leads you to care for someone. It’s the way a good parent feels about their child. I am truly blessed to be in a devoted romantic relationship, and people ask about it all the time. I’m not sure what they see, but they can tell it’s different. I struggle to put into words how it feels because it always sounds arrogant, and it is not a boastful thing. However, so many people settle for committed, that I wanted to try and put it to words for you.

• Love is preferring one person’s laugh to everyone else in the world.
• Love is fun. It’s like seeing a blockbuster summer film that no one else has seen yet. It’s so amazing and awesome that you want everyone else to experience it, too.
• Love is taking care of their needs before your own – not because you are being nice, but because they are the first thing on your mind.
• Love is 100% reciprocal. (I used to think that one person always loved more than another, but I don’t believe that anymore.)

• Love is not Ross and Rachel from “Friends”. If one partner is acting like Ross, there is no way that relationship will work long term without the other person being truly miserable.
• Love is not work. I’m probably going to irritate a lot of people with that statement, but I owe it to the young people I know to be honest about this. When you are with the right person, it really isn’t work. I know it sounds corny, but you really want the other person to be happy so much that you find the compromises pretty easily and quickly.
• Love does not control you. It won’t tell you who to choose as friends or how to spend your time. (“Honey-do” lists not withstanding.)
• Love builds you up. I can list a million reasons why I love Richard, but the most shocking thing about our relationship is that he can also list a million reasons about me. We both tell each other those things all the time. I joke that I have to harass him a little just so his ego won’t be too big, but I adore him and he knows it.
• Love isn’t jealous. Not just of another person, but of anything. We don’t worry about each other’s loyalty. We both have healthy relationships with friends of the opposite sex. Neither of us are worried about those relationships because we are devoted to each other.

There are lots of other things that love is or it isn’t. If you have a doubt in your mind, then that probably isn’t the real thing. I know that is harsh. I’m sorry for that. I  know a lot of people in committed relationships who have built happy lives for themselves, but it isn’t the same as being devoted. If you still have that choice in front of you, my wish for you is that you hold out for devoted.

What A Brain Cancer Caregiver Wants You To Know Before You Head to the Polls, aka People You Need to Meet: #45 Kristen Gauly

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Screen Shot 2014-11-03 at 11.14.55 AM

What I wish I knew before my Mom was diagnosed with Glioblastoma Multiforme…

When brain cancer entered my life, I couldn’t have processed or understood at that moment that it was the cancer that keeps on stealing. It stole my Mom’s speech, her movement on the left side, her laugh, her smile, her personality, in short, it took all of her. And then, it came for us.

My brother, David, and I have been close my whole life. I’ve been blessed beyond measure in that respect. We endured much growing up; both of us faced major obstacles that required full family support to survive. It was always a comfort to know that my Mom, Dad and David would be there to face whatever challenge showed up next. I wish I knew how to prepare to for the day when crisis would result in the death of the leader of the pack. At thirty-six, it’s very difficult to think about how to face the rest of my life without my Mom.

My Mom’s fight with Glioblastoma Multiforme (GBM) was short. It began on Valentine’s Day of 2013 and ended on the afternoon of May 6, 2013. In those eighty-two days, she endured a resection, a stroke three days post resection, and three weeks of physical therapy which kept her from any sort of chemo or radiation. Mom’s left side was completely paralyzed thanks to the stroke, chemo, radiation, continued physical therapy and finally home hospice.

I wish I’d understood the health care system better. I wish I’d known that lack of funding, lack of research and no new treatment was the stark reality for those facing GBM. That death from GBM is the rule, not the exception. I wish I’d known GBM is considered “rare,” and that because it’s such a low priority, it’s considered an undesirable disease to study. I wish I’d known all of these things so I could’ve been prepared, planned ahead, advocated more effectively. But I didn’t.

I wish I knew before cancer that this… IS IT! Of course I know we only get one life; I wish I’d recognized earlier the importance of each day. I wish I’d taken more pictures throughout her life, that I’d spent more time with just her when she wasn’t sick. I wish a million things had been different, but I understand they simply are not. Mostly, I wish I knew how much the death of one family member can change the dynamic of the entire family. We aren’t the same. My Mom was the glue. She held everyone together, carried the Band-Aids and tissues in her purse for emergencies. No one tells you that cancer will change everything. Forever.

I wish I knew how just plain ugly cancer could be. There’s an unwritten rule among GBM folks: Do not compare any other cancer to this. When anyone does so, it is hard not to cringe. I’ve stood beside my dear friend while her Mom conquered ovarian cancer multiple times. GBM is nothing like that. My close friends, especially those who came to see my Mom, learned quickly this was a whole other beast. My Mom had the reasoning ability of a child post-stroke. She could say things that were cruel, such as when she told a friend that I pushed her out of her wheelchair and tried to kill her. Oh how that stung! Long gone was my sweet, smart Mama who loved others so very much. Nothing is quite as humbling as cleaning your Mom during a Depends change or feeding her soup and wiping her mouth.

I wish I knew how much others cared before cancer. People came out of the woodwork when they find out my Mom had GBM. They cooked, cleaned, prayed non-stop, gave gifts, and struggled for words that could possibly make my family feel better. My work family responded in a way you read about in books. They donated money in my Mom’s name to ABTA, covered my butt, and prayed non-stop. They took care of my cat, cleaned my apartment, gave me hugs, and listened when I needed to just spill my heart. My friends did all of this as well, but to see my work family just jump in without being asked told me quite clearly how they felt about me.

I wish I knew about post-cancer, post-funeral aftershock. I was ill-prepared for the after effects of cancer. I didn’t understand that my brain was processing all of these emotions for months after my Mom was gone. I continuously lost items, I forgot what I was doing, would find my keys in the freezer. I found myself continuing to panic with every incoming call and text, and sleep was hard to come by for months. Sometime around the five month mark, I started having nightmares. There are still days—over a year later— when I cannot remember what I’m doing or sleep through the night. While less frequent, the nightmares still love to resurface at the first sign of stress.

Lastly, I wish I’d known that all the things that fell apart did so for a reason. I’m not referring to my Mom’s death; her death is something I’ll never understand.  It is only now that I begin to recognize that sometimes you have to experience extraordinary pain from loss before you decide to change priorities. My Mom was my biggest cheerleader; her cancer helped me see my life much clearer. She was constantly telling us good things would come from her cancer. I’ve made connections with others fighting GBM, begun working to spread smiles through my charitable project for kids with, Brain Cancer Share Your Shirts, and I’ve strived to make my loved ones my top priority everyday. The more I delve into advocating, the more of those “good things” begin to surface.

Brain cancer has not changed my core values or beliefs. However, some parts of my life have been permanently altered. If you ask me which issues are most important to me at the polls in 2014, you’ll find my answers dramatically shifted from those I would have given a year ago. My first priority is now supporting those politicians, regardless of party, who support brain cancer research. It matters. I wasn’t always a major supporter of brain cancer funding, but then again, I wasn’t always a thirty-six year old living without my Mom courtesy of GBM.

Missing Patricia A. Gauly today, and always.

With Love and Hope,

Kristen Gauly

Editor’s note: If you would like to learn more about what Kristen is doing in her mom’s memory, check out her Facebook page: https://www.facebook.com/pages/Brain-Cancer-Share-Your-Shirts/160672910806397

People You Need to Meet #38: Clint Murphy

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What I wish I knew before my mom got brain cancer… the value and limits of time.

Last picture with mom

For me, Friday, September 12 was like any other day in the life of a presidential campaign staffer. Working from dawn to dusk, doing everything and anything to push the ball just a touch forward in the task of getting John McCain elected as the next President of the United States. I lived and worked in Tallahassee, FL and was the Deputy Southeast Regional Campaign Manager for McCain for President.

That night, a few campaign staffers and I headed up to Marietta, GA for a GOP Unity Rally on behalf of Senator Saxby Chambliss and the Georgia Republican Party. Nearly a thousand Republican volunteers from throughout the state would be congregating, and it was a perfect time to sign up volunteers, recruit people for coalitions, and generally show the flag on behalf of Senator McCain. I had arranged for the Senator to call in to the rally and express his thanks for their support.

The night before I had talked with my mom, and I got the impression she wasn’t feeling well. During the day on Saturday, I talked with her and again got the distinct impression that something just wasn’t right. She insisted that I call her when I got back to Tallahassee that evening and that I shouldn’t worry.

The event was a success, and we were all excited about having gotten so many people signed up and engaged in the campaign. In the months before, the Obama campaign had placed staff in Georgia and tried hard to make Georgia competitive. With nothing but volunteers and me and my teams’ efforts from Tallahassee, we organized the state, built coalitions, and flexed our muscle via earned media events and scared the Obama staffers out of Georgia and into North Carolina.

I dropped everyone off at their respective homes and was entering the code to get into my apartment complex while I was on the phone with my mom. The sun was setting on what had, for me, largely been a great day. Up until that point, Saturday, September 13 had been a very successful day, and I was excited about the future. For my mom, it would be an entirely different story.

As I spoke to her, mom seemed so calm as she described to me the events of the night before and then, with what seemed to come out of nowhere, she said, “They found a mass in my head.” I believe my initial response was pure disbelief, and when she confirmed for me what she had just said, I immediately started to have a panic attack. I had to hang up the phone because I just needed to scream as loud as I could, something that I had honestly never done and have never done since.

I called back and spoke with my cousin who walked me through the events of the following day, which lead to this grim discovery. On Friday, my mom had noticed that her tongue felt thick. She called her various doctors and sadly, none of them returned her calls. She called my aunt and they decided to go to the emergency room.

Initially, my mom was told that it was likely an allergic reaction to something and she was given a prescription for an EpiPen. While getting the prescription filled at the store, mom had a full seizure and back to the emergency room she and my aunt went. It is then that they performed the CT scan and found the mass.

I wanted to drive back to Savannah right away, but between crying and already being tired, I couldn’t see clearly to do that. I went back to my apartment and began to research everything and anything as it related to brain tumors. Everything I read made me even more upset. Eventually, I went to sleep as I was crying so much I could barely see the computer screen, let alone make sense of anything I was trying to read.

The mass was large, and it had tentacles forming something like a dumbbell in my mom’s brain. The CT and MRI had suggested a Glioblastoma Multiforme Brain Tumor (GBM). A GBM is one of those diagnosis that, by and large, has had very limited hope for a long time. Innovations in treating, let alone curing, GBM have not been forthcoming. Having been so involved in politics, I knew that Senator Ted Kennedy had been recently diagnosed with the same tumor and had successful surgery to remove the tumor. I went to work researching where he went to have that done.

My mother seemed so calm as we sat in the hospital room the night before her biopsy. She wasn’t crying and showed no sign of even being nervous about what might lie in front of us. I on the other hand was a mess. I tried to keep a brave face, but I couldn’t. I was scared, sad, angry, and just about every other emotion you can imagine.

We scrambled to get all the necessary forms completed in advance of the biopsy because I was informed that if the tumor were operable; they’d likely go ahead and remove it at the same time. Worried about what condition my mom would be in afterwards, I didn’t want to leave anything to chance.

It was random chance that my aunt and I were walking down the hall when the surgeon came out of the operating room. He informed us that the tumor was inoperable and that it very much looked like a GBM, but would need the path report to confirm that diagnosis. Based on what he saw, he said he thought my mom had less than 3 months to live. We were dumbstruck and heartbroken. Even writing this now, I can feel that helpless feeling that I felt that day in the hospital. With everything in my being, I felt that those words just couldn’t be true.

In researching Senator Kennedy’s experience with a GBM, I saw that he went to Duke. He had surgery, was getting treatment, and doing relatively well, all things considered. I called Duke, got all the information to get a second opinion, and camped out in front of the path lab waiting on the slides so I could send the package to away in hopes my mom would be accepted as a patient.

There was no way that I could or would accept that my mom had less than 3 months to live, thus I went on a one man campaign to ensure that she got into to see the same surgeon that worked on Senator Kennedy’s tumor. My goal was to give my mom the best chance that there was to ensure she would survive this diagnosis and disease.

My mom’s 3-month diagnosis turned into an incredible 18-month experience. Through all the ups and downs over those 18 months, you might be surprised to know that, aside from the initial conversation about her possible death just before the biopsy, my mom and I only talked about her death one more time.

In February of 2010, mom and I made our final trip to Duke. It was on this trip that we had the final conversation about her possible death and she laid out for me her thoughts, as best she could, on the experience that she had gone through in fighting this tumor.

The doctors informed us that the tumor had started to grow again and that we were running out of options and were likely at the end of the line. Most people at this point would assume that we would have had Hospice assistance, but we didn’t. Even after returning home, we still did not have Hospice.

On the return home, mom shared with me that she had few regrets in life. She would do a few things differently, but all in all, she was pleased with how her life had turned out. She wasn’t angry that she had this tumor, nor was she angry that God was cutting her life short. She felt that it had all happened for a reason and that she was confident that God would use this experience she was going through for something better. She had a few people that she wanted to talk with before her journey was over and, if possible, wanted to make a trip to Hawaii. Her strength and bravery was just amazing. I was in awe.

On the other hand, I was a mess. I spent every moment of my time not spent working or taking care of mom, researching other treatment options, calling medical centers, and sending medical records to get another opinion. Sometimes those calls were so hard that I had to call back because I couldn’t control my crying. I was not prepared at all to lose my mom. I was not ready.

On February 28, my mom fell down and hit her head. She seemed fine and the doctor from Duke spoke with us and suggested that unless she seemed to be in pain that we wait and take her to her primary doctor in the morning. Mom seemed fine the rest of the day and evening, however the next morning she began to go downhill.

That Monday, I still thought we had more time! I spent the morning with her and then ran errands in the afternoon to go ahead and purchase the cemetery plot, send off yet for another 2nd opinion, and then have a conversation with my mom’s nurse at Duke about a possible hospital to hospital transfer. The nurse from Duke was the one who actually told me that we were at the end, and that there weren’t other options or opinions and that what my mom needed now more than ever was to be given permission to die. To acknowledge how hard she fought, but to let her know that it was okay for her to let go.

I returned to the hospital, and together with my family and a couple of my mom’s best friends, we sat there with her. By this time she was in a coma. I asked everyone not to cry or be sad while we were with her. We talked about my mom’s favorite flowers and a tear shed from her eye. The nurse at the hospital told me that this could last just tonight or could go on for some time, but almost as quick as she said that it seemed to come to an end. I told my mom how much I loved her, and how proud I was of her fight. I assured her that she would be going from my arms to the waiting arms of her mother and father, and that all would be okay.

Without notice, mom woke up and looked right at me. She turned her head to look at her sisters and friends and then took her last breath. Her death was both peaceful and beautiful.

When it was over, then I cried. I cried out how much I wish I had done more. I cried at how sorry I was that I hadn’t done more. I cried because while she was at peace with what she had been through, I was not, nor was I even ready. I felt like I needed more time.

—-
Mom Hug

Since my mom’s death, I have gotten involved with the National Brain Tumor Society as the Lead Advocate for Georgia. Additionally, I am a brain tumor caregiver mentor with Immerman Angels. I want to use the experience I went through and the lessons learned to help others going through a similar situation and try my best for the experience my mom went through to be used to help benefit others.

It should be noted that when I read Senator Kennedy’s book, True Compass, he referenced his own desire to share his experience with GBM so that he could offer hope to those who faced a similar diagnosis. Knowing Senator Kennedy’s experience showed me the path to hope for my mom, and for that I am grateful.

52 People You Should Meet: #36 Melissa White

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Sweet, little Adele

Sweet, little Adele

What I wish I had known before our barely toddler got brain cancer…

I’ve always been the kind of person that likes to stay busy, have a hand in everything. I like to do as much at our kid’s school as possible, be involved with our parish, help in our community. I had no idea how much we would need all those people. I had no idea that they would rally around us before we even knew we needed it. I’m thinking back to those first days, weeks, months of Adele’s diagnosis and treatment. If someone had asked what we needed instead of just stepping up and doing it, I don’t think I would have known what to say. If I did have an idea, I would have been too proud to voice it. I do now know what we needed and were blessed with, and I hope it helps other friends and families who want to know how to help.

Let’s start with just how debilitating it can be to have a sick kid; a “really sick, possibly won’t make” it kid. It was literally all I could do to roll out of bed. I probably functioned on about 50% of my brain during the worst times, the chemo, waiting on those crucial MRI’s. Nothing extra was happening, lots of McDonald’s was consumed, and we limped along. The worry was physically and mentally exhausting. I had no idea how much worry could knock a person down. Thankfully, I had given up all of my volunteer duties and part time work as soon as Adele got sick. I gave myself permission to focus solely on her and our family being together. Our world narrowed in a big way to the most critical, most important things and everything else had to go, at least for a while.

The best thing anyone did, and continue to do, is pray for Adele. I’ll never forget someone’s message “when you are too tired to pray, I’m praying.” That was, and still is, incredibly comforting. I did have times where there was nothing left, and I was so thankful for the folks out there praying for Adele. To this day, prayer holds us up. We’ve received several relics and medals that we keep near Adele (she has relics of St. Benedict, Gianna and Gerard under her crib sheet). She also has a miraculous medal under there. You can’t really put a chain around a toddler’s neck so sleeping with them (safely) was the next best thing.

Food was probably second best on the list of things folks did. Our kids would have eaten chicken nuggets every night if it wasn’t for our amazing parish, friends, and even strangers. Even better, everyone brought tons of food, so even though we only got a few meals each week, there was plenty of food. Don’t give someone your dishes, please use a foil pan that they can throw away. The last thing they need is to worry about returning your Pyrex. Some of my favorite meals were the snacky ones where we could just grab bits here and there. Also awesome was the meal that could be eaten or frozen. Sometimes we were either out of town or needed to eat other food first. The ability to freeze a meal and pull it out later was wonderful.

Another huge blessing was a family that single handedly took over our lawn care. Honestly, we probably never would have remembered to mow. Even if we did remember, we were tired or gone or just wanted to be together as a family. This goes for the other every day tasks of life too. Go fold laundry or pool cash together with friends and send someone to clean house. We were blessed with a couple different friends who gifted us housecleaning, and it was amazing. The sheets never would have gotten changed otherwise. When you spend an hour or two on someone’s every day work, you are gifting them an hour or two. That time is so precious.

Don’t ask to mow, just show up and do it. I always felt guilty saying yes to help, and I was so busy during hospital stays that I couldn’t keep up with texts, calls and emails. When I did have a minute, there was no cell service or I just didn’t have the energy. Just drop off a meal, or just take a Coke to the hospital. And then go home. I know that sounds mean, but it takes a lot of extra energy to entertain a visitor. Like I said, this is my experience, everyone is different. There were a few, very low maintenance visitors that were very helpful and without them Peter and I would have lost our minds.

Please don’t stop emailing or texting; just don’t expect a response. We had a very busy, social life before cancer struck, and I felt very isolated at times. Even if I didn’t reply, I loved reading the emails and messages. It meant a lot that folks were thinking about and praying for us. A lot of times the message was exactly what we needed right then too, like the friend praying when we were too tired. I know you don’t know what to say, just “Hi, I’m praying” is good.

Our parish, friends and family raised cash for us and created a non-profit fund for Adele at a local bank. This was a huge Godsend that we didn’t even realize would need and continue to need. Medical costs of course are huge, and then all the extras like travel costs, extra eating out when you don’t have the energy to plan a meal, things you didn’t realize you would need (like the time our one week hospital stay turned into 3 weeks.) We have been so blessed with financial support, and it made a huge, huge difference in our stress level. Not having to worry about missing bills or not having gas money was and is a major blessing. It’s also so good for our hearts and souls to see all the folks pouring out their love to Adele in such a tangible way.

We had a core of consistent hospital visitors that kept us fed and sane, and they rank right up there in the top three best things folks did for us. The guys brought food that didn’t come from the cafeteria; they were helpful, and they didn’t care if we hadn’t showered for four days. They would even hold Adele (who was sometimes screaming because she felt like crap and just wanted Mommy or Daddy.) They didn’t require anything from us, and they filled our tanks so we could make it another day. Being in the hospital is rough, being there and watching your child suffer is almost unbearable.

My husband reminded me how much our friends and family stepped up to help with our three big kids while Adele was in the hospital. There is no way we would have stayed sane, and Peter could have kept working without all the help. Peter’s work has been amazing as well, God is definitely guiding us.

We, well, mostly Adele, got “stuff” as well, along the way. Some of it was very needed, like the Basket of Hope we got after brain surgery in St. Louis. She was feeling better, getting bored, and that came at the perfect time. Others mentioned items like quarters for laundry and vending machines, stamps and stationary, actual mail (this was especially nice for our big kids, several thoughtful folks sent them letters and items.) Someone else to send thank you notes on behalf of the recipient – I could not keep up with thank you notes. We were literally in the hospital for almost 6 months with little breaks in between.

There were also sibling packs from the hospital and other folks that helped our big kids not feel so left out. This really depends on the age of the siblings though, it might not be so helpful for smaller kids. We did get a little overwhelmed with toys and blankies at one point, so temper your toy shopping. I will say that twice we got two big grab bags, those were the best. It was lots of random stuff, mostly one time use and/or disposable, for mommy, daddy and Adele. It was a great distraction and time filler and it was great stuff like gum, little snacks, bottled water and bubbles. All excellent items that we wouldn’t have to pack up when we eventually went home.

Speaking of going home, kids on chemo are must more susceptible to germs so things like Clorox wipes and Purell are always nice. That housecleaning comes in nice here too. You don’t realize the level of clean you have to obtain until your kids immune system is completely wiped out and a germ normal folks encounter every day could send them right back to the hospital.

In summary, prayer is number one. Pray, pray, pray. Just knowing people cared about us and didn’t forget us was so important. And then just the regular every day stuff we all do with barely a thought like eating and home maintenance. Time is a huge blessing, anything you can do to give a family more time together is huge. And it probably doesn’t even cost you any money. Stuff is just extra, little stuff that won’t create more work (i.e. finding a place to put or pack it).

Thank you Jesus for all the folks you sent our way, for all the folks you continue to send our way. You’ve blessed us abundantly. Please bless others in need the same way. Please grant Adele complete healing from cancer and many, many, many years with us on Earth. Jesus, we trust in you.

Editor’s Note: If you would like to keep up with little Adele and her journey, you can follow Melissa’s blog here: http://workinprogress-melissa.blogspot.com/?m=1

In Memory of Pauline Jones Elmore

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Today is my grandmother’s birthday. She would have been 96 today, but she passed away in March. She’s one of the few people in my life who died that was truly ready to go. I had the opportunity to visit her a few months before her death, and she told me she was ready. What faith it is to be at a point where you can say, “Lord, I’m ready.”
She had outlived two husbands, two sons, and several grandchildren and great grandchildren. But she also left behind many other children and grandchildren who miss her greatly. She doesn’t have an official obituary on the web, so today I thought I’d offer up this little reminder of a life well lived.
Rest in Peace, Pauline Johnson Jones Elmore. Wife to Kenny Jones and Austin Elmore. Mother to Carolyn, David, Troy, Jerry, Charlotte, and James. She was a true matriarch of our family and she will be forever missed.
In Memory of Pauline Jones Elmore
July 25, 1918 – March 5, 2014

People You Need To Meet: #14 Stacie Guirguis

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Basil bfore_after

December 24th, 2006. Our son was only 4 months old. A normal annual physical, landed the love of my life in the ER. After a urine test and some blood drawn, he was asked to go for an MRI of the brain because for some reason his PH Levels had sky rocketed. With not an ounce of fear, he did this and before the MRI was complete, they sent him to the ER. He had no symptoms. NOT ONE.

Four hours later, after many faces of many doctors, nurses; after many “I am so sorry you are going through this”, “what a young couple”; a doctor…very tall in stature, calming, yet gracious face holds out his hands for mine, but not wanting any comfort, I put mine in my pocket.

“You have a brain tumor. Two, actually. One the size of a melon in the left frontal lobe of your brain, The other on your brain stem.”

Silence. My legs became weak. My head heavy. My heart stopped. What? “Ma’am, I am so sorry. Your husband has brain cancer.”

Basil lived graciously with brain cancer for 6 years. His first craniotomy was grade 2, his third proved to be the deadly GBM. Offered only 15 months to live, he never believed ONCE he was going to die. But he passed away only 14 months later, as I lay next to him, spooning the man I said I would grow old with. His last breath was an exhale…and as I waited for that inhale, I felt his presence leave. Forever 38. He left behind two beautiful sons. Evan was 6, and Shane just barely 2. Rest in Peace my love. 5.31.2012

 

“What I wish I knew before my husband was diagnosed with cancer.”

Faith. It comes and goes. I prayed and prayed. At times, as much as I prayed is as much as my faith was tested. Sometimes I would walk away from it. Sometimes I would submerge myself in it. Sometimes I would hide behind it. Faith can mean so much and so little at the same time, if you have no belief that there is a bigger and better out there. Every time I lost my “faith”, I was reminded that I had 2 little blessings I called my sons and I was grounded again.

Numb. I was numb for almost 6 years. Numb was all I could feel. It was like a blanket that held me together, one that I wish I could have seen before I lost my husband. Being numb, hardened my marriage yet broke the intimacy; it shrunk my faith and suffocated my fears. Numb also protected me and provided my life with a pre-conceived strength I thought I had during those 6 cancer filled years.

Friends. I needed them. Family. I need them more.   My family was taken care of while I nursed my husband in his now infancy stage –washing him, hold his head up for food, while I sang him his favorite songs, terribly…while I brushed his teeth and cleaned his messes. Family and friends came. They provided smiles for my children, they made sure food was on the table and that homework was done. My house was clean and my dog was let out. Family and friends, see your darkness, they feel your pain and without asking know your weakness. They just showed up. I love them and owe them more than a “thank you” will ever encompass.

 

Lessons to pass on:

Let go. Let go of the things that weigh you down. Trust life. Sometimes answers are not what we need.

Breathe. Really breathe, though. Take a deep breath and remember that blessings surround us daily.

Smile. My husband always said. No matter what smile. Even if you aren’t happy. Smile. Smile at a stranger, a passerby, it confuses people, and it feels good.

Stop comparing. In hindsight, I would always ask, “Why me?” My friends aren’t going through this. Why me? Why? Because shit happens. Work with the time we have. Every moment is a gift. Some people aren’t even given time.

Love endlessly.

Hug more.

Sing in the shower, even if your kids tell you that you sound like a man.

Dance. I mean really dance. Like you think you can dance.

Have a drink. A stiff one or a favorite one, yummy one at least once a week 😉

Have compassion.

Hold your husband’s hand. That simple gesture sparks something irreversible every time you do it. And it’s always an irreversible good spark.

Always say I LOVE YOU.

Never, ever go to bed angry.

I have been a widow for almost two years. I wish I said I love you to him more. I wish I held his hands more and remembered his scent. Nothing prepares you for cancer. Nothing. It’s a journey that takes its toll and manages to change you. My heart breaks daily for my boys who will probably forget how their dad held them, how their dad hugged them and told them how much he loved them. His legacy lives on through them…it’s a continual gift my husband has left me behind.

Finally. Be GRATEFUL and show grace. Gratitude carries you through, and grace is your guide.

Cancer. Brain Cancer. Death. “What I wish I knew before my husband was diagnosed with cancer.”—I wish I knew a cure. I will love you forever, Basil. Always and forever 38.

Editor’s note: Stacie was kind enough to share pics of Basil, and we decided to show him before brain cancer and a few weeks before he died. To me, his eyes tell a story none of us could put into words.

 

52 People You Need To Meet: #10 Karen Simonds

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There are many things that I wish I’d known before my brother, Jon, and my husband, Andy, were diagnosed with GBM brain cancer. First, because I think of this all the time, I really wish I’d learned to skip rocks from my brother. He tried to teach me so many times, and it was the last outdoor activity I did with him before he died. When he showed me, I could do it. On my own, not so much. My last truly happy memory of my brother was when we were on the Sacramento River with his kids and mine. We had a really good time even though he was having difficulty walking. We shared memories of our childhood and all the fun times we’d had on that river. I wish I could skip rocks.

The second thing I wish I knew before my husband was diagnosed was not to form opinions so quickly. I remember thinking when my brother was so sick that there were so many people around (hello – I was one of them!) and that I didn’t know them so therefore, who were they? Well, now that my husband is bedridden, we cherish the close friends, from all aspects of our lives, who stop by. It may be his work friends; it may be our daughters’ friends who grew up with us; it may be a school friend of mine, but all of them are equally important and none of them are “family.”

I wish I’d known to cherish, truly cherish, the little things. There was the coffee my husband made and delivered to me every day while I was still in bed. There were the hikes he took us on and the “secret adventures” he planned. There were camping trips and picnics. There were the gifts of a mountain bike, fly rod and kayak . All of which I adore and none of which I realized how very much I actually wanted. Now that he isn’t able to participate in these activities it breaks my heart that I didn’t stop and soak in every moment.

I wish I’d known that it is okay to accept help from friends. It’s taken me a long, long time to get this lesson. People want to help. I would want to help. Ask for help. It’s okay, and people are more than willing to give their time and talents to help a family in need. Some of the most incredible gifts have been things I would have never thought of. There was the shoveled driveway, the Christmas lights that came down, the money given for prom dresses just because the giver thought our girls deserved extra special dresses, the counseling sessions that were miraculously paid for, the case of wine that showed up, the cards, the phone calls from people from our past, friends that showed up on our front door, the school counselors helping the girls, all gifts from the heart. It’s been incredible and so very hard to accept with grace.

I’d wish I had known what a difficult job it is to research treatments and clinical trials and alternative nutritional information. I would have been reading these books a long time ago and changing my family’s diet (even though we eat quite well!) years ago. It’s important to stay on top of new treatments so that you are able to question your doctors and understand your options. I assumed that this was something I didn’t have to worry about because the doctors would do it (and in our case, they did) but that’s not always true.

I’ve always had a lot of respect for medical professionals, but now, they are my heroes. Really. From the first doctors and nurses we had here in Boise to those at MD Anderson and UC San Francisco, we have hit the jackpot. These people are amazingly kind, compassionate, and skilled. Oh, and underpaid. Coming from an elementary school teacher, that’s saying something! However, what I wish I had known and what I now tell others, is that when all else fails, go with your gut and ask lots of questions. It helps to bring someone along to take notes. We always, from the very first appointment, had someone to take notes. They know who they are and they are invaluable.

Another thing I wish I had known is how very much I despise the statement, “God only gives you what you can handle.” Really? Because I’m kind of at my limit and so are my parents, Andy’s mom, his brother, and our kids. Don’t say that. Ever. I know people mean well but that just might cause me to reach out and scratch some eyes out. I. Can’t. Handle. Any. More. The end.

I wish I had known that my brother and my husband were/are absolutely amazing human beings who never for one second deserved this and who both fought this so bravely. Of course, I always loved both of them, but I really wish I had realized what absolutely amazing people they were/are. Both of them put their family first and during the brain cancer years, always, always supported other people with the disease – even when they were barely hanging on themselves. Both of them cared more about others, and both of them said they wouldn’t have changed a thing. Crazy. I would have changed a lot of things if I could. I guess that’s why it’s not my time yet. I haven’t learned true compassion, and I haven’t learned to skip rocks.

 

Saying goodbye

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This blog series we’re doing, 52 People You need to meet, was designed to introduce you to people living through the extraordinary circumstances that brain cancer introduces to life. Today, however, I want to introduce you to someone that you will never meet. You won’t meet her because she passed away this morning, and outside of my parents, was the largest single influence on my life.

Her name was Pauline Jones Elmore, and she was my maternal grandmother. “Miss Polly” to those who knew her about town, she was at once classy and supremely humble. Generous to a fault, she gave more of herself than anyone I’ve ever known – and I know some generous folks. She didn’t want an announcement in the paper, but she didn’t mention social media, so I’m going to write my own tribute to her here, knowing that any words will fail miserably in comparison to the woman.

When I was little, too young to remember, her first husband died. They had six wonderful kids, and my grandfather is remembered warmly by the family. When I was still small, she remarried the only man I remember as a grandfather, and he made such an impression that I named my daughter after him. My grandmother have us the gift of these wonderful men in our lives. Through her parental guidance, she also gave us the gifts of a close family with aunts, uncles, and cousins who are people I am proud to call my family.

Her open door – to family or strangers- taught me a lot about how to treat people in this world. Too often I worry that my house isn’t clean enough (hers was always spotless) or that i don’t have anything to offer (she always had food at the ready – and a candy bar or two if you knew where to look). I’m sure she worked hard to make her home welcoming, but it was mostly welcoming because of her. Over the years, various family members lived with her as get navigated a rough patch of life, and she was far more gracious about it than I think I would have been.

She loved music, and frequently surprised me with her choices. She wore colorful clothes in her prime, always with the perfect matching accessories. She liked to travel, but I think she likes being home more.

At her house, you could count on family dropping by, more food than any group of people should eat, and one or more spoiled dogs. When I was a kid, I remember her going to McDonald’s to get the dog a cheeseburger, and then almost as an aside, asking if I wanted one too.

I also remember one day, in the parking lot of that same McDonald’s, when she parked the car after going through the drive-thru for our food. I asked her if something was wrong, and she pointed to an old man walking down the street. He had on a long brown coat, and he looked pretty dirty. She said, “I’ve seen that man before, and I don’t think he has anywhere to stay. It’s gonna get cold tonight, and I’m gonna go give him some money so he can get a hotel room.” She took every bit of cash out of her wallet to give to him. That’s who my grandmother was in a nutshell.

She outlived two husbands, two of her children, and a few of her grandchildren. She was a pilar of strength showing that life goes on even after loss. She had faced death many times, and I know that she was ready for her own. That makes it slightly easier, but I don’t like the idea of a world without her.

Everything I am, I owe to her. (Yes, my parents did a great job, but without her, my mom wouldn’t even exist.) Even if I live as long as she did, I will never do half as much good for this world.

So today, on this day that she left earth to reunite with her loved ones in Heaven, I wanted to introduce you to my grandmother.

PS: The pic is of my two kids and “MawMaw”. David, I’m sure, was there waiting to give her a big hug when she reached Heaven’s gates. Austin will be here with me, carrying forward their legacy.