The Importance of a Hug

I read an article recently about a well known man in the UK who was given a teddy bear when he was 2 yrs old and kept it with him always, even until his death. (http://www.bbc.co.uk/news/magazine-21265701) This warmed my heart as it validated my own love of teddies. My collection includes one that was my mother's, given to me as a small child. She is now over 60 years old.
Over the years I have collected many teddies and one of the most important deciding factors is their "huggability." There is something truly comforting about hugging a teddy bear. It quite simply soothes the soul, well at least it does for me.
Which is why I've been very impressed by The Serious Teddy Bear Company. Their mission is to bring teddies back to adults. Did you know that for some elderly folks in nursing homes, a teddy bear is the only family or comfort they may have? I recently gave over 25 teddies to a nursing home so that those elderly without families to visit had something to love and hug.
My journey with daughter's brain cancer has been very isolating for me but the thing that remains are my teddy bears. I sleep with one every night.
I would cherish the opportunity to win a teddy from The Serious Teddy Bear Company. They truly know the importance of a good hug. (http://bearhugs-theblog.com/win-a-free-hug-sweepstakes/)
Now, go hug a teddy bear!!!

Cancer Can Be A Gift

Yes, you read that right. I said cancer can be a gift. Someone once told me that and I had the same thought as you. “That’s just crazy! How can something so horrible be a gift?” Well, think about it for a minute…

While you’re letting that ruminate, let’s talk about mothers. Now, I love my child more than the air I breathe. She is part of me. When she’s away from me I actually feel her absence. She is an incredible human being. She is, in fact, one of the most incredible human beings I’ve ever encountered in my life and I’m not just saying that because I’m her mother. But, I also know that in the grand scheme of things, we are not special. I don’t love her any more than any other mother loves their child. And we are no different from other families touched by cancer.  My heartache is no greater than Kasey Radford’s mom. My fears are no worse than Taylor Gettinger’s mom. The void in my life when she is gone will be no bigger than the void left in Jackie Oswald’s mother’s world.  So I had to adjust my thinking. Instead of asking “Why me? Why my child?” Well, why NOT me? Why NOT my child? Why NOT our family?

I’m not trying to trivialize our situation, far from it. I’m just trying to process all of this and turn something awful into something more helpful. (I won’t say positive.  I just can’t justify that word right now.)  Along this brain cancer journey, we have encountered many people touched by cancer. Patients, caregivers, families and yes, survivors. Some are still in the fight. Some are no longer walking this earth, leaving behind their loved ones. Spouses, children, brother or sisters, fathers and yes, mothers. A lot of mothers.  I have followed their stories either on Caring Bridge, Facebook or through Imerman Angels. When I found out someone’s child had died, I used to have such guilt because I still had my child and they didn’t. I still do have my child with me. But for how long I do not know.

Which brings me back to…Cancer can be a gift.

There are MANY, MANY mothers that have lost their child(ren) to accidents, suicide, sudden death (such as an aneurysms, SIDS or an undiagnosed heart condition), war and attacks like the Newtown shooting, Boston bombing and 9/11. For these mothers, their child was ripped from them. They started their day off in their normal way, just going about their business only to end their day in shock, despair and unimaginable grief. They may have had a disagreement with their child that morning only to be left with unspoken words or apologies. They may have had plans to take a trip only to be left with unused tickets.  They may not have spoken to their child in years, only to never speak with them again. Heart wrenching. No more hugs, no more kisses, no more cuddles and no more “I love you's.”

But with cancer, while it is no less heart wrenching, there is time. Often not a lot of time, surely not ENOUGH time, but time nonetheless. Time to make memories. Time to say all the “I love you's” that you want.  Time to take all the pictures you can. Time for all the hugs, kisses and cuddles you can get. And yes, time to make arrangements for the inevitable.

The gift of time.  I told my daughter many months ago that while I don’t have a lot to give her like amazing trips of a lifetime or some such, the one thing I could give her was my time. That I have plenty of and it’s all hers, for as long as we have together.

So I'll leave you with one of my favorite quotes "Yesterday is the past, Tomorrow is the future but Today is a Gift. That's why they call it The Present."

All You Need Is Now!

In 1982, I began my journey with five fabulous chaps from England...aka Duran Duran. This new Fab Five took hold of my heart and forever changed not only me but my taste in music. I was not like most "Duranies" though. I wasn't one of these screaming, teenage fans. I was fascinated by these chaps. Simon Le Bon's lyrics had me mesmerized. Their videos excited my imagination. Whenever I ran across other fans that were silly or stupid, I actually considered it disrespectful to the band. How dare they act that way about my boys? While other girls had romantic fantasies about Simon or John, I simply wanted to go sit in some cafe' and have coffee with them. Truth be told, I still do. I'd love to talk photography and art with Nick.

On March 23, 1984, my little 17 year old dream came true. I got tickets to see them in concert. That day didn't start off so good, however. Back in January I had had some fairly serious medical issues and as a result I continued to suffer from bad headaches. My school knew this and I was allowed to take my medication for it should one pop up during the course of a school day. Sure enough, the day of the concert, in Biology class, I started to get a headache. I asked my teacher, which was actually one of the football coaches, if I could go take my medicine. When he refused to allow me to go to the water fountain to take my meds, I mumbled "God, you piss me off!" as I walked back to my desk.  Unfortunately, he heard me and sent me to the principal's office for "cursing." Normally I would have been mortified, but ironically, the only thing I was worried about was my mother not letting me go to the concert. My mom, being my mom, was more angry at the school than at me. So concert bound I was!!!
The concert was so much more than I had dreamed. I had a horrible seat way up in the nosebleed section. But I didn't care. I danced and sang along with my boys. And yes, I got annoyed by the 12 year olds screaming and panting. Again, disrespectful.

Fast forward to 2005. I'm a grown up now and over the course of the past 20 years I had been married (and divorced), had a child, and was generally living life. But I kept up with the boys. I bought some of their CDs over the years. Some of it I liked, some not so much. They had had some "personnel" changes. Andy and Roger had left, and come back. Simon and Nick had formed Arcadia (which I loved!), and John had formed Power Station (which I didn't much care for, but it was John). So when my then boyfriend gave me the new Astronaut CD for my birthday I was delightfully surprised. But I was even more thrilled when I opened my card and found 2 tickets to see my boys in concert later that summer. On August 3, 2005, I saw Duran Duran for the second time in my life. Could it be another dream come true? The 17 year old in me was ecstatic. I sang, I danced and I couldn't stop smiling. The boys looked great and sounded better than ever. Of course, the audience was much different. No 12 year olds (although a few people did bring their kids). We were all grown women now. But something about this group of chaps we loved as girls, still stirred up all those teenage thrills.

Since 2005, my life has taken some very different turns. The short list includes a move back to SC from living in Virginia for 12 years, the break up of a 5 year relationship (yes, the one that took me to the DD concert), my daughter being diagnosed with brain cancer at the age of 19, loss of career, et cetera, et cetera, et cetera.

On Monday, August 13, 2012, as I logged into Facebook for my morning fix, I was alerted that it was in fact a dear friend's birthday. This dear friend was one of the few people that appreciated Duran Duran the way I did. So, as my little "gift" to him, I found the video for "New Moon on Monday" and posted it on his Facebook wall along with my birthday greetings. This act would lead to an entire week of immersion into the world of Duran Duran. I couldn't get enough of them. Some how I stumbled upon DD's website and found out the boys were on tour and would be in Atlanta that coming Sunday (Aug. 19). I was so bummed. What I wouldn't give to see them again. In spite of the disappointment, I spent the week having a renaissance of sorts. My friend and I shared music, videos and interview clips. I thought it was enough but deep down, I was crushed that they were going to be so close and yet so out of reach. On that Friday night, my mom came home from work and said to me "I just hate that you can't go see them. How much are the tickets?" I logged onto TicketMaster and went through the little process of finding the ticket information. Lo and behold, the seat that came up was a truly fantastic seat. (I had been going through this little process all week and had always gotten a crappy seat.) When I showed it to my mom, all she said was "Go get my credit card." OMG!! I was going to see them!!! It didn't really sink in until the next day. I was really and truly going to be seeing Duran Duran for the third time in my life.

So, on Sunday, August 19, 2012, I made the 5 hour drive to Atlanta's Chastain Park. I was ready! I had my ticket, enough money to get a t-shirt, my camera and a rain poncho...just in case. I wasn't sure the camera was actually allowed but I brought it anyway. I never take chances. This time, there was no way I was going to leave without pictures. As fate would have it, as we were all waiting for the gates to open, the sky opened up and the rain came down. Anyone that knows me, knows that rain is one of my worst enemies. It can take my hair from fab to flat in 2 seconds and I was having a great hair day. I wanted to look good. But as the rain came down, I just didn't care. I was at a Duran Duran concert. Nothing was going to bring me down. I donned the rain poncho and carried on.

As the music started and the boys took the stage, the rain stopped. And in that instant, my 17 year old self resurfaced. She had a blast. She got the pictures she wanted. She sang. She danced. And when Simon gave the intro to "Ordinary World" explaining that this song was the band's gift to those going through difficult times, she cried. Each tear was my way of letting go of all the stress and hardship of the last few years. It was as if I was the only one standing there and Simon was talking to me and letting me know he understood. I will never listen to that song the same way ever again.

A lot of people in my life don't understand this love affair I have with Duran Duran. It isn't an infatuation. It's an admiration for a band that has brought me so much joy for 30 years. Those that scoffed at them in the 80's, are now singing their praises. Say what you will about Duran Duran, but they have stood the test of time. They are still relevant. And they are still bringing great music to the world and to generations, old and new.

I don't know if I will ever get to see them in concert again but I will always be a fan. And yes, I still want to simply sit in a cafe', drink coffee and have a nice chat with the boys. THAT would be the ultimate dream come true. But for today, all I need is now.

God's Little Lifelines

I hadn't realized it had been so long since I last wrote on my blog. I've been so caught up in dealing with the unemployment appeal, going to NIH with Rebecca, finding a job, and trying to relocate, I kind of forgot about myself. I forgot to let myself write about what was going on in my life. Sometimes I think we get so caught up in living life, we forget to experience it. Writing is the thing I have found that lets me do just that.

Lately I've started to feel kind of numb to this whole "my child has brain cancer" thing. I want my life to be normal again. I want to not be angry. I want to not cry at stupid times. I want to plan ahead. I want to have a day (an hour even) where I don't think about it. My life is now defined by the milestones we reach. I'm not sure what life was before November 5, 2009. I find myself saying things like "let's see, it was before her first surgery" or "when she was getting radiation" or "on our 3rd trip to NIH." It reminds me a lot of when I was a Navy wife and everything was measured by deployments.

The day I heard the words "the radiologist thinks it's a brain tumor" I only remember my arms going cold and the look on my child's face. That look will forever be burned into my memory. The next day, I emailed 5-6 of my closest friends. Women I knew to be prayer warriors. My faith had become quite literally the size of a mustard seed and I needed some reinforcements. I cried the whole time I typed the email because as I read the words on the monitor, it was becoming more and more real. We didn't know anything at that point other than there was something in her brain and that life would never be the same again.  I have had some of the darkest moments of my entire life in this last year. Moments I didn't think I would survive and yet I always woke up the next morning, breathed in, breathed out and then dealt with the tasks of that particular day.

One of the most difficult things I have had to deal with since this began is being around my former husband and his family. When I divorced him, I knew I would have to continue parenting with him but all along I always thought once she was 18, I would never really have to have much contact with him again. I'm not going to go into a bunch of in-law bashing but suffice it to say, a lot of damage was done many years ago to my self esteem by these people and I have come quite a long way since the divorce. I'm a very different person since that time and I like who I am now. I'm proud of the job I've done raising my daughter. They have not taken an active role in her life over the years. So to have to spend time with these people, celebrate Christmas last year with them, host them at the rental home during her radiation therapy, has nearly driven me mad. I did have a revelation at one point during their visit to Charleston...I don't HAVE to care what they think of me any more and it's not my responsibility to entertain them. It was quite liberating.

The other thing that has nearly destroyed me during this time is the financial devastation. I am the only one most negatively effected financially. Even before I lost my job in July, I had lost a lot of money from having to take so much time off. I have had to deplete my IRA, and sell a good bit of my jewelry. These are the things no one tells you about when your child has cancer and that's not something you can ever prepare yourself for. There have been people, Angels really, that have helped me, given me gift cards and even cleaned my house.

It's these types of kindnesses that I have come to call God's Little Lifelines. There have been times I felt like I was just ready to give up. Sometimes I feel like I can't breathe. I will admit, I'm tired. I'm very, very tired. It's like I'm treading water and about to drown, but just when I'm ready to stop treading water and go under it's like God says "I know you're tired. I know you're ready to give up. But just hold on a little longer. Just hang in there. I'm still here. Don't give up." And then something happens...a check for just the right amount comes in the mail, a phone call from an old friend comes and lifts my spirits, I get an email from someone about a potential job to apply for, a song comes on the radio that speaks to me or a friend on Facebook makes me laugh so hard I about wet my pants and for that brief moment I allow myself to forget.

I've learned not to expect the lifelines but I definitely recognize them more easily now. I think it's important in situations like this to recognize blessings, look for things to be thankful for, and to ALWAYS remember, it could be worse.

So in this season of thanks, I will say, I am thankful for my child, my family, my friends, my faith, my dogs, really good pillows, comfortable shoes, good fitting jeans, good food, a roof over my head, and ALL of His little lifelines thrown my way in the last year.

My "WOW" moment in Washington DC

I just got back from another whirlwind trip to Washington DC.  This visit was a follow up to NIH for an appointment with Dr. Howard Fine, Rebecca's neuro-oncologist. We found out that the "stuff" they took out of her brain last month was mostly necrotic tissue but there were in fact some live active tumor cells that  showed signs of aggression.  Given that these cells withstood radiation and 3 rounds of Temodar, Dr. Fine has determined that they are resistant little boogers and it is time for a change of strategy.  Rebecca will be enrolling in a Phase II clinical trial for the drug Sutent. This is not a chemo drug per se. It is an anti-angiogenesis drug, or a "smart" cancer drug. This drug blocks the tumor cells from forming new blood vessels and essentially cuts off the tumor's "food" supply. Sutent is FDA approved for kidney and gastro cancers and this trial will help determine it's efficacy in treating brain cancer, specifically high grade gliomas like Rebecca's.  Dr. Fine explained that the standard next step for someone in Rebecca's situation would be Avastin, another anti-angiogenesis drug, however if we start Avastin first we eliminate the possibility of ever trying Sutent. Kind of a no brainer really (no pun intended). Why would we purposefully rule out a form of treatment? I guess some folks are hesitant to try clinical trials but we look at it as a prime opportunity and not so much a risk.

So my "WOW" moment, you're wondering...The Washington National Cathedral.  Please understand I have travelled extensively in Europe and lived in Italy for 3 years. It's pretty hard to WOW me in this country. I've seen ALOT of cathedrals. I've been to the Vatican. It was hard to realize at first that I was actually in the U.S.  The Gothic style was breathtaking and the stained glass windows...WOW! The really incredible part of the Cathedral is that everywhere there are little details that the architects, builders and planners, purposefully put there.  There is even a carving of Darth Vader on the northwest tower! While I was there I learned that most Gothic cathedrals have a theme to the carvings on the west entrances that depict the Last Judgment.  The National Cathedral's theme in the carvings of the west entrance is of Creation of Humankind, and the Creation of Night and Day. It's quite simply one of the most positive places I have been to in a very long time. It's an Episcopal church but it welcomes people of all faiths, it opens its doors to all. How cool is that?

It's been a long time since something in this country WOW'd me.

Champion of My Heart

Let me introduce to you my heart dog, Riley. He is my Zen Master and my shadow. This is the essay I wrote for him for the Potomac PWC Club's Picnic. It was a special category called:

THE CHAMPION OF MY HEART

In 2001, I found myself in a place I never thought I would be—facing divorce. Not only was I faced with this devastation, I had to give up my dog in order to move. Thankfully, my parents took my Pekingese, Gizmo, for me. A few months after he went to their house, my mother informed me I would not be getting him back as they had fallen in love with him. I waited a few years but my life had a huge hole in it without a dog. I had always had dogs growing up and now it just felt empty. I did some extensive research and decided I would look into getting a Pembroke Welsh Corgi. I had always loved these dogs and their clown like appearance. Plus, the Queen of England has Corgis!

In the summer of 2003, after putting feelers out with breeders to no result, I found an ad in the local paper for a little female. I called and made arrangements to go and meet this little girl. When I arrived the lady told me her name was Roxanne and she had been rescued by a friend of her daughter. She explained that Roxanne had been tied up outside because the family didn’t know how to “handle her.” I asked the lady about her and she told me she was just the nicest little dog but the lady had developed allergies and could not keep Roxanne. After a few minutes, Roxanne jumped up on the couch next to me and looked at me as if to say, “Where have you been? I’ve been waiting for you.” I took her home with me right then and she was perfect from the start. She had some slight behavior “issues” I contributed to the abuse and neglect of her past but she was my faithful sidekick and went everywhere with me. She was my first Pembroke Welsh Corgi and she started my love affair with this breed. 

In late 2005, Roxanne developed seizures. At first I didn’t know what had happened to her. She would go frigid, make this horrible vocalization that sounded like screaming and then lose control of her bladder. I took her to the vet many, many times but after months of trying every treatment I could come across, the vet told me he thought it was a lesion on her central nervous system and the best thing for Roxanne was to her put down. Losing Roxanne left a huge hole in my heart. She was devoted to me and so very obedient; I couldn’t have asked for a better friend.  

My grief overwhelmed me and I just could not think of how I could get through this tremendous heartache. I contacted a local breeder and we talked for a good while. She helped me understand that only another dog could fill the hole in my heart. She said that Roxanne would not have wanted me to be so sad. She referred me to another breeder upstate. When I finally worked up the courage to call this breeder she was very kind and talked to me about Roxanne. She also told me she thought another dog would be the best way to turn my grief into joy, to take all that love and give it to another. 

That breeder didn’t have any young adults available at the time but referred me to a breeder in Pennsylvania who had a thirteen-month-old male available. I contacted this breeder and she told me she had been “running on” with him but that he had developed an elbow problem that would disqualify him in the show ring. He would never be a Champion. Well, after hearing about this dog I knew I had to meet him. A week later I arranged to go up to Pennsylvania to meet her and her special boy. When I got to her house this big goofy gorgeous male Corgi greeted me. He was so happy and smiling! I was completely taken aback by his magnificence. I asked him if he wanted to come live at the beach, and he just looked at me as if to say, “Let’s go!"

His name was “Micah.” But I saw in him a valiant spirit and changed his name to Riley, which means “valiant.” Riley has this incredible way of looking at me, almost as if he is just going to start talking. He is a very smart and obedient boy. And he is very devoted to me. Riley has an innocence about him that is so heart warming. And he doesn’t mind at all that I have so much love to give. He is always ready to play and be as close to me as he can. We went through obedience training and he took right to it. He is so joyous and carefree that he reminds me not to take life too seriously. My family keeps telling me how magnificent looking he is, but I know that the most magnificent thing about Riley is his valiant spirit. 

2007 was a very tumultuous year for him and me. I went through some personal trials, and he had to have surgery on his left leg. Although he was on strict crate rest during his recuperation, he never stopped being the happy, goofy Prince I love. Through it all he remained just as devoted as ever. That smile of his brings me joy that I cannot describe. He is now fully recovered from his surgery and we have a stronger bond than ever. 

I rescued Roxanne, but Riley rescued me. The hole in my heart is healed, and while Corgard Valiant Renard Roux will never be a champion in the show ring, he will always be the Champion of my Heart.

Somewhere in the Middle

This is my first blog attempt. I started a Caring Bridge site last fall after my daughter was diagnosed with a brain tumor. I discovered something about myself. I am a fairly decent writer and I actually do have stuff to say. So after a lot of thought, here goes. This will most likely just be ramblings from me. This brain tumor journey has been quite the experience. But I also love to tell stories about my two corgis.

As I was trying to think of a name for this blog thingy, it occurred to me that I am "somewhere in the middle." I am 43 years old (kind of middle-aged), I am the sandwich generation (in between my mother and my daughter) and my career, while not all that long seems to have reached a midway point (more than a secretary but still not a very experienced paralegal).  Hence, Crossroads. I thank Freddie Skipper for the name. It's genius really.

So here I stand. At the crossroads...