Monday, March 7, 2016

Restless in Seattle

I know I've been absent from this blog for a while...a long while.  I have to admit, just the thought of coming back here after being away for so long makes me break out into a cold sweat... and even makes me a little nauseated.  There's not much more I can say that I haven't already said.  But something inside me stirred this past weekend.

Adam and I just attended the annual Firefighter Stairclimb.  This is an amazing event done by the The Leukemia Lymphoma Society every year where firefighters across the world come to Seattle to climb 69 flights of stairs in the Columbus Tower .... all while wearing their heavy gear and breathing bottled air... face masks, helmets and all.   This ads up to be about 60 pounds of total weight (not including their body weight ;-)).  The first year we brought Gabriella and Bridget up and the last two years, the girls have stayed at home with grandparents while we've gone to show our camaraderie.  We have consistently submitted honorees including our daughter but this year, we submitted a few more children to be honored..and remembered during the day's event.  LLS posts pictures of these honorees in the stairway while the firefighters embark upon their climb....under 20 minutes for the faster ones and up to, sometimes more than an hour for the slower climbers.... all along encouraging the participants and reminding them that they have willingly chosen to climb in support of those who have not chosen this battle.  It's a somber memory for each and every one of them as they make their way through the stairs.  I am lucky enough (or unlucky...depends how you look at it) as a parent of an honoree to be escorted to the top and watch as these firefighters finish their climb.  And I love being there to cheer Adam and his crew members on.

LLS has a dedication wall so I made my way over to write our honorees on the wall.  I started writing the names of the children we submitted to honor; Gabriella, Samantha, Tianna, Matthew, Lauren, Sofia....then I started to write down the names of the recent children we had come into contact with; Ava, Sofia, Luke, Massy, Giselle.  Then I though, there are all of our inspirations on the Team G website so I continued to write their names down; Nick, Ben, Alex, Aurora, Ahmie, Brooke, Hadlie, Jake, Ginger, Charlie, Carter, Sammuel, Sage, Jalen and Breanna, Taliyah, Pablo, Mya....  And then I got exhausted just thinking of and trying to remember all these names.  There were moments of just feeling overwhelmed and I did my best to take it all in.

Leukemia has hit me especially hard this past few months when my good friend's daughter Samantha was diagnosed.  Then another friend, and another acquaintance, another friend of a friend diagnosed  all within days and months of each other.  It feels like everyone around us is getting diagnosed with cancer...pediatric cancer...which was once so rare in my life.  Even at work, one of the nurses said to me recently, "everyone has cancer".  Yes, I feel this way too, even though that isn't the case.  It is just our lives.  I've done my best the last three years to "work through" some of the stress and the almost impossible journey that we traveled but I've realized I live so much in the present.  It's joyous to be here.  I have my two daughters, I have my families health.  That's all I ever wanted.  Do I have to relive the trauma which was taking my daughter and my family through treatment?  A question that I still ponder and probably always will.

Which brings me back to this blog... this damn blog...this life saving blog.  I haven't yet been able to go back and read it.  No way.  Can't do it.  I end up with a lump in my throat and tears in my eyes.  Sometimes I think I can even tell my story without having tears in my eyes.  But I can't.  Especially not this past weekend.  And I have a survivor.

Always a highlight of our trip...meeting with Dr. Doug Hawkins,
Seattle Children's Hospital and Children's Oncology Group.

As many of you close to me know, I'm currently in a statistics class.  Online.  And it's not always fun. Most of the time, it sucks.  I just applied for the pediatric nurse practitioner program at UCSF but I don't know if I've been accepted yet.  Yes, I will specialize in pediatric oncology and I will continue my journey and mission to fight pediatric cancer, with everything that I have in me.   I ask myself, why the hell am I doing this?  I often think, I could easily slam the computer closed, throw my TI 83 Plus calculator in a drawer and just be done.  Then I look at my children, all those precious children, the ones that have fought, the ones that haven't survived.... all of them.  And I keep going.

Thursday, August 13, 2015

And there it answer.

It took me a while to write this post.

Back during the month of June, some amazing friends pledged to participate in the Tahoe Tough Mudder and raise funds to fight childhood cancer. It. Was. Amazing. Not that I like getting down and dirty (but I really do) but  a chance for a group of friends to come together for a cause more important than getting muddy, jumping into ice cold water and getting shocked...all for fun.

It was a chance to prove to ourselves that no matter how awful the pain is at that single moment, it's temporary.  It's not like the "cure" that children fighting cancer (or any other illness for that matter) have to endure. It's voluntary.  As our team mate said, "What's the worst that can happen?".  Pain is temporary.  It's something we can always overcome. not. We can win it and we can beat it but it never quite goes away. 

For the last couple of weeks, I've been trying to answer the question, "Why do people have to do such crazy things in order to make a point?  Why do we have to be extreme or partake in extraordinary activities to raise funds for kids fighting cancer?"  I'm no extreme athlete but since Gabriella's been off treatment, I've been brainstorming for ideas to fundraise....Running the Big Sur marathon for charity, riding 50 miles on a bike, dancing around like a crazy person on the street in a cupcake outfit I crazily put together, even trying to spearhead (with the help of my crazy fundraising partner in crime, Bill) a 24 hour ride-a-thon. Sit on a stationary bike and petal for 24 hours....hmmm.  I've even gone to the extent of applying for Survivor, tried to find a partner for Amazing Race (Adam, Alison, any other crazies out there...???), and debated applying for Naked and Afraid.  Anyone seen that show?  HA!  21 days of primal survivor with someone you've never met without food, water and clothes.  How crazy is that?  I'd promise to donate a portion of my winnings to the foundation for pediatric cancer research. That's how much I care.  Is it just me and my preposterous ideas?  Or does it really take that much for someone to raise funds for these kids that are fighting so hard for life. I don't get it.

The death of a child will always rock me to my core. Many times, I've watched these children bravely face their battle. You know when the end is near. You just don't want it to be true. Then there is that update.  "My child has earned their wings". Those words never cease to hit me like a ton of bricks. Like a punch to the gut. Sunday morning after our race, I read this same post about one of our warriors. 

I often wonder if I will ever be in a state of mind where my guns aren't ready to be drawn. Where I won't feel like I have to keep fighting.  I don't know. Is it just a moms sense of protection?  Or is it being a cancer mom?  The other night, I was putting the girls to sleep. The usual bedtime efforts and resistance pursues as I do my best to not get frustrated (and enjoy the moments....which I've proudly gotten better at...most nights). There's this moment of transition after all the tossing, turning, asking for snacks, and asking for water when they actually fall asleep. This same time my mind instantly recognized that they are finally asleep....and a peaceful surge rolls through my body.  I let it take me but only for a moment. Then, I pull back. Back on track. Back to fighting. 
This same things happen with the emotion of it all. An instant comes where I'd like to cry and I'd like to completely break down and feel what I'm feeling. But I push it away. During Gabriella's treatments, I got so tired of being scared, so tired of feeling weak and so very tired of crying. I have to be strong. I HAVE TO BE STRONG. 

I read a blog post from another cancer parent the other day. He talked about dealing with the horror of it all after the fact.  It's always treatment coming to an end when everyone thinks you are finished, done, "congratulations" are order...but it's not like that in the cancer world, especially when it comes to your child.  After things are quiet and treatment is over, it's almost scarier. You get a little lost and the focus of what was so simple (fight for your child's life) gradually gets mumbled and mustered again in the real world. Trying to get back to some type of reality...some type of normalcy. 

Now, someone that I've crossed paths in my life only once had this to say, "I run to raise awareness for different causes. When you feel like the pain is no longer bearable with each step taken, I think of the children and the suffering and pain they endure through abuse, hunger, homeless, etc. Which is what pushes me through. I run because I know that I can make a difference through awareness."
And there it answer. We do it because we can. We do it because we have a choice. Those that fight illness....they don't have a choice. 

Addition to this post: GABRIELLA'S SCANS ARE CLEAR!!!!!!  8/13/15

Thursday, July 30, 2015

Overnight summer camp

Here I am again, sitting in front of a blank screen trying to figure out where the heck do I start.  I know I need to write but its never easy.  Life has a way of constantly changing.  With those changes comes the challenge of adjusting.  There have been so many times where I think to myself, "Great!  I have it all figured out" just to turn around and have the next challenge knocking on my door.  And here we go, trying to figure it out all over again.

Gabriella went to camp this week.  Overnight camp.  For 6 nights.  And the camp is about 5 hours away.  Do you hear my anxiety?  I don't think I've been able to catch my breath just yet.  I probably won't until she comes home.  On Sunday.

I miss her terribly.  I try not to think about the fact that her absence could have been our reality.  Yes, that thought comes creeping in and just like a fly, I swat it away as quick as possible.  But doing this isn't allowing me to work through these occasional feelings of sadness, the tears that I feel when hearing about a child's diagnosis or death, and the overcoming feeling of grief and inability to remember what we went through.  I want to cry (and sometimes I do), I want to cry a lot, I want to grieve for that family but I've put up this enormous barricade in order to protect myself.  Keep going.  Keep moving forward.  Keep running ahead of it.  I was never like this before.  I cried about everything.  We were in it (treatment), I would often learn about other child; relapsing; dying.  And I'd cry.  I'd sob.  I remember one day being in complete tears because another little one had relapsed, and I reached out to a "more experienced" cancer mom and asked her, "How do you do this?  How can you make it through the day hearing about yet another child facing cancer."  I realized then that I had to change in order to get through it.  Put up a wall that would only be the tiniest bit penetrable for those dire moments.  And the building commenced.    

I've had the chance to reflect a little in G's absence.  Going through Gabriella's treatments was one of was THE HARDEST THING I'VE EVER DEALT WITH.  A few months ago, a newsletter was sent out asking parents to submit our child's story to create a book on children with cancer.  Any chance I get to share G's story to those wanting to make a difference is a good opportunity to take.  So I let them know I would write something and send it in figuring her story is written down in about 50 places and would be easy to find.  But it wasn't that easy.  It's been told in so many ways with so many evolutions.  I had to write another one.  Thinking this would be easy, I went back to the beginning of this blog to remember.  I only made it through a couple of sentences before slamming the computer shut (gently of course).  I can't do it yet.  I can't go back to process it.  Not yet, but I know I have to eventually.  Shit, sometimes I don't even feel like we went through it.  It's almost surreal because it was too real.  Wait, it was real.

Since I'm that crazy kind of mom, I thought it would be fun to send some packages up for G so she could have little tastes of fun and little memories from home.  It kept me busy so I wouldn't have to think about how much I would miss her, but it was also fun.  I think I got carried away.  

Friday, June 26, 2015

"First" hair cut

Oh wow!  We finally did it. We finally cut G's little locks as she got her first post-treatment hair cut. Oh my. A big milestone in our lives. 

My friend Angela offered to cut Gabriella's hair because she has been talking about getting a bob for a couple of months now. I try not to be the one to tell my kids what to do with their hair, except to make sure they brush it or I'd run around the house chasing them with a brush. But I asked her to wait till after her dance recital and wanted to make sure she was ready. Actually, I wanted to make sure I was ready as well.  

After her treatment ended, her little sprigs on her bald head started growing into beautiful wavy blonde curls and she was able to start kindergarten with a little "pixie" do. So many times people would comment on how cute her haircut was and ask me if I frosted the ends. The thought process in my mind would always come up in the obsurdity that people thought I would take my 5 year old to a salon and have her hair colored...What?  Are you kidding me?  Do I look that vein?  Then I would think to myself, "It's actually not a cut". 

It would always stir up some emotion and I would think about how I was going to respond....should I tell them she had cancer?  Do I feel like explaining the whole story to a stranger?  Do I want to rock this persons world and tell them what my sweet little girl went through the past year?  And depending on my mood, I'd either tell them it was from the sun and be done with it or I'd straight up tell them she had cancer, chemo, lost all her hair and now it's growing back.  Some would be so shocked to hear this and not no what to say except "It's so pretty.  Oh I have to pay for my highlights, haha". And I would think, yes, she payed dearly for those. 

Not that I'm attached to hair or my children's hair but Gabriella loosing hers was such a pivotal moment in our journey.  It was the moment where we though, "oh shit. This is really happening". And the moment we knew everyone else in the world would realize what our child was enduring.  It's the commercial you see on TV with the little bald kid and a huge smile on their face asking for donations for children fighting cancer. You know, the one that no one wants to ever think about yet alone experience it first hand. Yeah, that was us. Somewhere back in the early part of this blog is a post about it. Her hair has gotten somewhat long before she was diagnosed and it was beautiful.  Sometime after her first or second treatment, we went to visit friends who were staying at a local resort and took the girls swimming. We were in the hot tub and hair just kept coming out. I was trying to ball it up and push it to the side so the people near us wouldn't know what was happening. I'll never forget looking over at Adam and just knowing we were both feeling the punch in our guts.  When we got home, I took some scissors and chopped it right at her shoulders. More and more continued to come out over the next few days and finally, it was coming out so much that I just continued to pull it until all the long strands were out. My heart just broke into a million pieces on the inside. But I didn't want my girls to know how upsetting it was so we made it "fun" and took a video. G just laughed and Bridgy, not even 2 at the time, picked up the whole wod of hair, realized she didn't like the way it felt, and threw it back on the ground trying to shake all the little pieces from her hands. The "hair fairy" came that night and left the girls a big basket of goodies. And yes, the hair fairy still comes to visit us whenever anyone in the house gets a hair cut...even Ellie the dog. 

Ok, back to today. The girls and I had been looking at some picture of hair cuts and they both found a couple that they really liked. After telling me she was so ready to get a "bob like Laurel's", our neighbor friend, G had said a few days ago that she "wasn't ready yet". So, we looked at more pictures and got her all excited about it.  She was ready.  I was ready. I was actually more excited to not have to chase them around the house with a brush, especially my Bridgy. But she's getting hers cut tomorrow. Ange put her hair in two little pigtails and cut those babies off. Whew. A surge of emotion ran through me and tears crept into my eyes. I'm not sure if it was sadness for all that time she let it grow out and was loosing her little blonde "chemo curl" or happiness because we get a fresh start. I'm thinking it was a little of both but more the latter.  Gabriella suddenly became this little lady, this beautiful little girl who overcame this horrible disease. I LOVE her hair and I am so proud of her!  Thanks Ange!

Seriously, this is the most I've ever written about hair.  Did I mention Ange cut mine too?  And I love it. 

Monday, June 8, 2015

My child didn't die of cancer.....

I wrote this back in April.  Never posted it. Not sure why.  But here it is.

Yet, every day I think about the fight.   I continue to fight because if I can spare just one mother the agony of hearing the words, "your child has cancer" I will continue to fight.  It's not always easy.  Often, I question my intentions and look at my own girls, asking myself, "why are you continuing to fight, why are you not spending every moment with them.  But, that's just not possible nor is it healthy.

There are certain times where it just hits me...thoughts, guilt, happiness, grief....and I just have to update the blog.  I know not many are out there and I'm hoping that more are following our Team G social media pages.  So these writings are more for me, to get the thoughts out.

It's been a big adjustment going back to "normal" life.  But it's not normal.  We still have fears.  We still have follow up scares and follow up scans.  And the task for me is finding the balance of what my heart raise my girls and be with my family, to be a mom, to work, to do it all.  Then there's the part that my other heart wants to fight for childhood cancer, to make it go away, to be a force to recon with.   It's a constant battle between balancing life, love, commitment, hope and all of the above.

I read an article that my friend had posted the other day (yes on FB which has the tendency to suck one in....that definitely needs many checks and balances in order to be a "healthy" balance). It was one about being a mom and having young children...and the sacrifices we make as mothers but the joys that come from those sacrifices.  It's interesting to look back on the generation of our parents...some of them were stay at home moms and others thought, "what the heck...I can have a career...and be a mom".  We were taught to pursue life, pursue opportunity, to get degrees, and all of the above. This is what I teach my children on a daily basis...go get an education, don't settle for less, and go conquer the world....because we can. But, as the article I was reading described, no one tells you that those quests can possibly come at a cost. No one tells you that in order to be successful in business and work that other sacrifices will have to be made. I'm actually glad no one taught me this. I'm actually glad because I am having to learn it for myself. That's the key. To make the discoveries on your own. Then and only then will you know what works best for you and your family. 

I still struggle constantly with these choices.  I think for any mom that having another part of life separate from your children makes  At the end of the day when I go to tuck my girls in, after all the "mommy, mommy, mommy, mommy" I hear most of the time that makes me want to pull my hair out by the end of the day (but that I appreciate and will always cherish), putting them to bed seeing the transition from "omg....please please go to bed" to "these children are so incredibly special and adorable"....there is no comparison.  

Sometimes but very seldomly, I look back on the posts I've written, thinking to myself "who is this person?".  It's me.  It was me.  Fighting my daughters cancer.  Fighting for her life.  It's not easy to read the posts I once wrote.  Often I will start reading, then look away because it's too much.  I'm not ready to go back there yet.  I'm not ready to process it all.   I'm to into the present and enjoy the moments that are here, now.  Then I think, do I really need to re-live it all?  I just did.  I was just there and I'm really enjoying not being there.  It felt like a lifetime ago.  I'm not ready to go back.
So, this is me.  Staying busy.  Staying on top of things.  Staying ahead of those random moments of my anxiety and stress.  Trying anyway.  Hmmm, maybe it is good to process.   

Day #10 - 30 Day Writing Challenge...Life after Surviving Childhood Cancer

Apparently I suck at writing challenges J.  So, back to the business of life!  All is amazing in our life.  Gabriella is reading like a champ and Bridget is getting ready for kindergarten!  At this point, we are all getting ready for summer and that should be a blast.

I'll write more soon.

Sunday, April 19, 2015

Day #9 - 30 Day Writing Challenge...Life after Surviving Childhood Cancer

The other day I sat down to write and got interrupted.  Then I tried again and ended up being too sleepy to write.  Again I thought about it....and decided that I'd rather veg on the couch and check out.  I've been thinking about what I'm going to write next because there's been so much going through my head this week.  Then I realize it's just been a really long week.  With scans on Monday, I can just write the rest of the week off.  At least, that's my excuse.  I think it's a pretty good one so I'll go with it.

I've been trying to direct my focus more these days.  Knowing that I need to write (at least that's what I'm challenging myself to do) and hoping that some clarity will come through this writing process has driven me to prioritize.  I realize that I just can't do it all.  Wow, that's even hard to write.  I thought I could and I wanted to.  I've even tried.  But I think that's what makes me so crazy, scattered, irritable....I just end up getting frustrated with myself.  Huh, what a concept.  My friends, my husband, my mom and everyone around me tell me I do too much.  I just laugh at them and say "whatever" sarcastically.  They know me too well.  I do it because I can and I want to.  Now, I'm realizing more and more that I can't...and I don't want to.  I'm selling myself short because when life is this chaotic, I sell myself short on other aspects.

Just yesterday, I was with Bridget since she doesn't go to school on Friday mornings.  After breakfast for her and coffee for me, I just wanted to get 30 minutes in of "emailing".  I think that was the impossible mission for the day.  "Mommy, look at this...Mommy what is this....mommy, how do you me get dressed.....".  That 30 minutes never quite happened.  I actually didn't get as frustrated as I sometimes would have and just embraced the moment.  It can wait.  It can all wait because what is more beautiful and special than witnessing my little 4 year old (almost 5) mentally preparing herself for kindergarten, going over numbers and letters and being so proud of herself for knowing.  I thought, WOW.  She is so ready.  Heck, I'm ready too but in a different way.  These moments are going to be few and far between, so I'll be damned if I'm going to let my own compulsion overcome my chance of just "being" with my girl.  It doesn't happen often and most of the time the girls play really well together.  But it will be in the blink of an eye when both of my girls are doing their own school work, off with friends and not want to be around mom and dad much anymore.  (Well, most of the time, we're not going to give them too many of those options ;-))

So, I've decided.  Instead of trying to do everything at all moments of the day, I'm going to "let it ride".  Fundraising, work, organization, school (although that might come sooner than later), these things will all be there and ready for me when I'm ready for them.  But my family and my girls won't always be.

I'm sure I'll find another crazy thing to do or try, but I'm hoping I can just experience it....not be compulsive over it, which I am well aware is my personality.

My baby G's own creation of a book of desserts.  I just love it and am glowing with mamma pride.
The sentence she wrote about herself is "The author once had cancer.  She is a survivor now.
How proud I am of both my girls.

Here's to Letting it Ride!