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...