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!

Sunday, April 12, 2015

Day #6 - 30 Day Writing Challenge...Life after Surviving Childhood Cancer

Geezus.  The one day I forget my sunglasses is the one day I find myself walking down the aisle of Nob Hill literally crying.  I walked by a woman with little children of her own and I quickly looked away.  If she only knew.  If only there was a chance that I could protect her from knowing.  Knowing that childhood cancer could strike her at any moment.  I didn't want my girls to see me but Gabriella is so astute when it comes to reading people and I don't think I got away without her noticing.

We had just watched Cinderella in the movie theater.  I needed a distraction away from home and the girls had really wanted to see this movie.  Actually, I did as well.  Damn Disney.  They do it every time.  Tears of happiness...for me, for G and I think a little for B as well. But that might be stretching it.  Cinderella was the first princess movie that Gabriella saw and probably the only one she watched at least 50 times over, at least.  So much of seeing this movie made me think about...well, made me think about her and how far she has come and how far we have all come.  She has been growing up awfully fast these last few weeks (I'm sure it's been longer than that but it seems so recent).  Some of the things that come out of her mouth just take me by surprise.  I have a glimpse what life will be like in a couple of years and I'm getting myself prepared ;-).  Sometimes I want to bust out laughing and her little grownup remarks but have to refrain myself.  She is, in fact, my "sensitive one"...just like her mommy.  Its a laugh of pride and an, "I'm so glad cancer didn't take her so I could witness these moments" kind of laugh.  I don't think she will really understand that kind of laugh until she is a parent herself.

When we got back home, I noticed she was being a little quiet.  I thought, "Oh crap.  She saw me upset and is worried now.  How do I ask her what she is worried about without putting fear in her about tomorrow?".  So I just asked her if she was ok and what was worrying her.  She told me she was worried about the shot thingy (the IV) that she has to get.  Just as she has received an ungodly amount of shots in her little lifetime, I reminded her how brave and strong she truly was.  In the movie, the key was to always be kind...and courageous.  I reminded her that she was one of the bravest people I knew and not to forget that.  Ever.

Just walking into the grocery store today after the movie, I had a moment where I was completely overwhelmed.  Thinking about our journey with Gabriella up to this point is just overwhelming.  And it all hit me at once.  It's hard to even describe.  The stress of scans, the awesome movie I just got to watch with my girls, or the emotion of it all.  It, aka. LIFE, has come full circle from our dark chaotic days of diagnosis and treatment where the only positives lie in taking every moment we could to make it better.  To the treatment ending and the fog clearing.  Sort of.  Right up until those moments when the torture of relapse brings us right back into the uncertainties of cancer.  The moment of panic when our survivor has an ache in her stomach or a funny feeling in her leg.  Believe it or not, that has gotten a little better.  But it's still there.  I sometimes look at her legs (as the doctors always do on her visits) and think, "Ok, is that a normal kid amount of bruising on her legs or is this something that is excessive, which could indicate leukemia, a possible side effect of her treatments".

I'm certain she is going to be just fine.  But, this monster caught me off guard once and prepared me to be a fighter.  I won't let it catch me off guard again.

Wednesday, April 8, 2015

Day #8 - 30 Day Writing Challenge...Life after Surviving Childhood Cancer

I knew it would be hard to get up early on Monday morning so I set my alarm with Kelly Clarkson's "Stronger" to get me going. The infamous video with all the little bald fighters was released shortly after G's diagnosis and it got us through some tough times. It's kinda like our "theme song". 

As usual, everything ran smoothly. She even got her IV without so much as a whimper of pain. Kudos to our nurse Allen who we've seen at the satellite unit the last few times. But during the scan I had a moment of justified anxiety.  We were stalled for a few minutes and "waiting for the doctors to look over the scans". It was just a little longer than the norm and the tech let me know they needed a few more pictures. Ugh.  My mind started racing with thoughts of "f*ck, is this thing coming back, what is treatment going to be like, what's going to happen to my baby, will we have to move to another state for treatment or will we stay here....on and on and on". If you've ever had an MRI you know how  noisy the machine can be.  Clank...clank... clank.... click click click click click....drk, drk, drk.....  But my thoughts got louder. 
It's never a good sign when they take longer than normal (or at least what we perceive to be a normal exam with our preconceived time frames) and brought me right back to the initial ultrasound where I was told "I can't tell you that information" when asking is that normal size. Then waiting while the tech discussed with the radiologist the perceived results.  The tech must've seen my anxiety (she was in the control room) and came out to let me know that she was pretty sure she overheard the doctors discussing Gabriella's scans looking clear. Ok. That was good enough for me at that moment and my heightened state came back down within mageable perimeters.  Whew, that was scary. We've had many scares along the way and that's just part of this life we live now. They are becoming few and far between, which I will gladly take. 

Adam and I both noticed the girls and their instant cheerful moods. They take so many cues from us as parents that it makes us more and more reinforced of our choice to see the positives through treatment.  "Mom and dad are ok, I'm ok".  They were off the wall happy yesterday evening after a long day at the hospital and the first day of being back at swim lessons.  
I didn't want to hide my feelings from them on Sunday when I was so visibly upset. I just wanted to protect them from the worry we carry as parents. Sometimes that's very difficult to do, especially when you are someone like me who wears their heart on their sleeve. But it is what it is and I will always strive for doing my best. 

Best part about the day:

Day #7 - 30 Day Writing Challenge...Life after Surviving Childhood Cancer

Clear scans. Clear clear scans. That's all for now. 

Day #5 - 30 Day Writing Challenge...Life after Surviving Childhood Cancer

I think scans are hard no matter how far out from treatment you are. I find myself in a state of crazy cleaning, staying up late, trying to satisfy late night cravings more readily than normal and wondering around the house trying to find something more to keep me distracted and keep my mind occupied. It's a good thing I don't keep more sweets around the house especially around now.  There is definitely some stress eating going on although my business keeps me preoccupied. 

The girls and I have been planning on building a fairy garden for a couple of months now. Finally today, after a cleaning rampage through the girls drawers and closets, power washing the outside walkways, realizing why not power wash the side of the house around my new planted garden area then power wash the front entry way of the house until my husband shuts the washer off, we finally got to the fairy garden. They had a definite sense of pride after picking the best spots for the flowers, especially Bridget. Digging, filling soil, bringing it all together was fantastic. Then the OCD kicked in. I had that great idea that was found while skimming through Pinterest and I got stuck on it. Even Gabriella drew out a picture of a fairy house "on stilts" with a "lower deck". So, I sawed, I got the nails out, the hammer, the saw, the drill, the extra pieces of wood and tried to put that thing together just as we both thought it "should" be. The girls lost interest and I ended up getting so frustrated with myself. How do I describe it...when one is so caught up in their mind that the aren't even present anymore. This is me. I have this tendency  to get so wrapped up and absorbed into something that it takes all of my "presence" away. Not sure if it's Gabriella's scans coming up, which I have to believe is part of the reason, or because my mind is still trying to sort itself out...or what.  It is so frustrating. I can't just do something. It has to be insanely done, if it's up to Kristin. 

We ended up with a garden that looked beautiful and that we would work on further. I pulled myself out of my mind, cleaned up, tried not to be irritated with myself which of course comes out in irritation with my family, packed up and we all went to the beach. We spend the afternoon with great cancer parents and their two little girls who one is currently fighting cancer.  The weather was perfect and the girls got to play on the beach while we watched the whales and took the polar bear plunge. Brrr. Wine, pizza, beach, great friends....couldn't ask for more. 

I'll tell you this, being a cancer mom was almost simpler than being a post cancer mom. Our mission was so clear back then. Fight cancer. That's it. Fight Gabriella's cancer with everything we had. And we did. Now, the lines become blurred. Do I work more or should I work less...should I work at all?  Should I just stay at home and raise my survivor and sib as normally as I can? 

Should I continue to put as great of an effort into fighting child cancer even though there are so many more foundations doing an amazing job who have that emotional need since their child died from cancer...since it takes me away from being "present" with my own family. And then there is graduate school. A combination of me going into a field with great financial rewards, with the potential of some medical practice independence, a larger salary, and a combination of helping helping friends with their basic questions about their kids and assist these children and families through the most difficult times of their lives. I can't wait to be that person but I must find the balance. 

Day #4 - 30 Day Writing Challenge...Life after Surviving Childhood Cancer

Somehow, I lost all of my content today. What I wrote earlier didn't save and it's too late to rewrite. Damn. The woes of technology. I'll write more tomorrow. 
For now, here's something I wrote back in January but never posted. 

"Even though it wasn't that long ago, it was such a different time in my life.  Sometimes it almost doesn't feel like it happened.  Especially when I look at my girl.  

Thank you so much for your words of wisdom.  Of course I still want to be relentless and inspiring!  That is something I never want to loose especially when I have seen the damage that cancer has on children and families.  But I do want to experience being a "normal mom".  It's all about finding a balance right?  I'm almost waiting for the day my girl says "I'm tired of being the cancer kid mom"!  Yes, it is so easy to enjoy the simple things.  That is really something I never want to forget." 

Day #3 - 30 Day Writing Challenge...Life after Surviving Childhood Cancer

Wow, 30 days of writing is no joke. I guess that's why they call it a challenge. 
I'll try to get this out before I fall asleep. More processing today. Is there a day that goes by where someone doesn't process their lives...or is it just anal retentive overly OCD people like myself?  Believe me, I'm working on that.   

I got to go for a long run with a new and becoming close friend of mine today. It's always so helpful to hear another working moms perspective on work and kids. Although I'm barely a working mom, I still consider myself to be a "part time" working mom (maybe a "less than part time working mom" would be more like it) with the actual job where I get paid and the job where my passion currently lies. Not to mention all the mommy duties that we all share as moms. Seriously, I have no idea how a full time working mom does it all. How do you do it all?  To spend quality time with the family as a whole, the kids, the husband, the house and everything that goes along with's no wonder why moms barely have any "me" time. Yet, when there is "me" time, there is sometimes so much guilt that goes along with it and make up time for the messes you come home to that's it's barely worth it.  But, yeah it's still worth it.  Anyway, I'm believing again in that strong word I use so's called "balance". I don't know how to quite get there but I will always strive to somehow get close to it. 

Adam and I got to spend a wonderful evening dining and talking about our next steps into the future...what the foundation will look like, what school will look like, and what our family will look like. Although you never quite know what things will look like until you actually get there. Even then, it can change drastically. You just have to keep working at it. 

Day #2 - 30 Day Writing Challenge...Life after Surviving Childhood Cancer

I was called in to work early today and decided to stay for 12 hours. I don't remember the last time I worked a 12 hour shift even though it's pretty common among nurses these days. Apparently I'm not a common nurse...but I already knew that. I think the last time I worked that long was before Bridget was born. 

Although, 12 hours did take a majority of the day, I did get a chance to think about my future plans with work and my career. I even got to process it a little in my dreams early this morning when I should've been getting up earlier and waking up my daughter for school. I'm such a bad mom when it comes to getting up early but I knew that too. I realized after waking up to my dream I really do enjoy my career as a nurse. 

I got to process my plans for the future and start actually realizing that going back to nurse practitioner school is more and more of a reality rather than a far-fetched dream that I once gave up. I've been wanting to continue with a masters degree ever since I graduated from nursing school....15 years ago. That was always my plan but life happened, marriage happened, children happened, cancer get the picture right?  I always admired pediatric oncology nurses and wondered how the hell they can do their job day after day. I only new a few before this journey and I always admired their chosen specialty.  I really admired the pediatric nurse practitioners we met among our journey as well. Adam said to me once. "That should be you".  It never even crossed my mind to work in this area. Then cancer happen to us. Obviously I can never look at it the same way and now I want to be one of those special souls that takes care of these kids on a daily basis.  

Of course the obstacles and the hurdles make the decision that much more difficult. The time (and timing although I've learned there's never a good time for any of it), the money, the ability to get a job when I'm done, time away from my's all playing a big role in this decision process. 

It brings up another huge question in my mind...the foundation we started to fight childhood cancer. I constantly have to remind myself that we are doing a good thing. I love it even more when other remind me of this. But I often question my capabilities for continuation and if there are other ways I can best benefit the childhood cancer community. After all, I'm just a passionate mom who's daughter survived childhood cancer.  
I didn't get a degree in non-profits. I didn't get a degree in marketing or business management.  And that is the basics of what it takes to run a foundation....that is, when the emotional crisis is over.  Maybe I went about it all wrong. Maybe I started the organization under the wrong assumptions. 

Let's be honest. The immediate need is gone. The crowds have dwindled and they have left the stadium. Gabriella is healed and it is perceived that the fight is over. But it's not. It's not for us and it is especially not for the 46 children who were diagnosed today with cancer. It's about them. I don't know how to get that point across anymore besides giving every single ounce of me 100 times more. And I can't do that. It's not balanced. It takes away from my life with my family. It takes away from time with my Survivor....the one life I fought so hard to keep. 

I see other families who've started foundations and the need is there. They are kicking ass in the fundraising arena. And I love seeing it. Love seeing the money go to research and to the immediate needs of families. Yes, of course I wanted to be the one who played a bigger role, but these kids are worth way more than my pride. I will take my Survivor and run. 

Day #1 - 30 Day Writing Challenge.....Life after Surviving Childhood Cancer

I've been debating the challenge of this writing experiment for days now.  The battle in my mind is going on like a war zone and I can't stand it anymore.  I was debating whether I wanted to make myself vulnerable again.  Debated whether I wanted to possibly be judged.  But I'm putting all of that aside.  I'm going to do what I know how to do best....write.  I think the breaking point for me was today's visit to the doctor with Bridget.  It took me right back to the day that I first discovered Gabriella's tumor, although I didn't know it was cancer at the time.

After G's treatments were finished, we wanted to "start over" in the world of our daughters' pediatricians.  Find a new doctor....try to recreate memories of good visits at the pediatrician...just get away from the beginning of our journey through (essentially) hell.  We were finished with the treatments at Packard and needed a doc for regular check-ups.  As it was, we somewhat neglected Bridget's visits for her "well child" check ups as we were so bombarded with doctors, hospitals, appointments, and all that just one more appointment might have put us over the edge and we knew Bridget was pretty healthy.  With a mom who sometimes thinks she's a doctor, not via degree but via years of experience and an otoscope and stethoscope in hand and a dad who is a paramedic, we had the basic needs covered.  We found Dr. Walker through a friend and started to see her in Capitola.  Yes, a fresh start.  It was good.  Relieving.  Just about two years into our visits, she let us know that she would be starting up at PAMF...where our journey began.  It was a very hard decision to return there but we knew how great of a doctor she was and wanted to continue with her.

I didn't realize how hard today would hit me.  Driving up to the clinic for an actual appointment started giving me this uncomfortable feeling.  It was like something bad was going to happen. I honestly can't remember going there since the whole diagnosis happened but today was different.  Bridget and I walked into the clinic, checked in and waited a few minutes while being entertained by a young mom trying to put her very young misbehaving 2 year old on a time out while her baby was crawling around on the floor.  I did't envy her position.  I was never a great mom with little babies but somehow we all managed to survive.   Once we got called back, I started feeling more anxious remembering the last time we were there was the day after I noticed Gabriella's mass for an appointment.  As we were walking down the hall, I thought to myself, "oh god, please don't put us in the same room" and what do you know, we ended up in the same damn room.  I remembered the walls, the little shelf of books on the floor in the same position, the bulletin board of christmas cards to the left of the exam table where G sat and the two chairs to the left where my mom sat with Bridget, only 20 months old.  Anxiety continued to creep through my skin and I had to hold back tears.  I didn't want Bridget to know how I was feeling because this visit was about her and her big stepping stone in life getting ready to start kindergarten.  So I had to compose myself as best I could.  And that I did.  Dr. Walker walked in and it was like a fresh start.  Bridget was amazing.  Truly amazing and I'm so proud of the little lady she's becoming.   Then I just had to mention to Dr. Walker that this was the original room we were in.  She shares the same exam room as our previous pediatrician.  Go figure.  She was very understanding and is so compassionate about the situation.   That is why we followed her back to PAMF.  Back to the place where our terrifying journey all started.

Part of the reason it is so difficult is that I haven't gone back "there".  Wherever "there" is, I have been afraid to go back there.  It's too close still.  Too painful.  And I have a survivor.  I will never pretend to even grasp the pain that a grieving parent has.  I have my daughter (both of them) to relish in every minute of the "now".  Maybe I am just trying to grasp all of what is now and what is normal but I still don't think I'll ever know what that word means.  Every once in a while, I will glance at it to read a paragraph of this blog and think to myself, "did I really write this?".  The words are so pronounced and the writing is so impassioned.  I don't recognize it to be my own.  To read it is to relive it.  And I'm not ready to do that yet.  

January 24th, 2012.    


Gabriella's scans are coming up next Monday.  I'm not as anxious as I used to be...or am I.  Maybe I'm trying to hold my anxiety back.  But in my mind, its totally not working.  I'm all over the place.  It's again, like there is a war in my head.  She'll be fine.  Then she tells me before bed the other night that she "feels like there's something in her stomach and it's hard to take a deep breath".  Whoa child. You can't say these kinds of things to mommy right before scan time.  I'm frantic in my head feeling her stomach at the same time trying to get more information from her as I calmly reassure her that we have scans next Monday and we will be able to see anything on the inside that shouldn't be there.  Ugh.

Sunday, February 22, 2015


Ok, it's March and this post is now a month overdue. I've been meaning to write for weeks now but as soon as my "January gloom" wears off I'm back at it again. But this is good. It's different. It's a good different. I can breathe. I can relax a little bit more. I can do a better job of balancing my time between my family, my work, the foundation and everything else. 
It feels great. 

What is it about January?  Is there such a thing called "post holiday blues"?  The same thing seems to happen every January.  After the holidays, birthdays, and all the events, it all seems to comes crashing down, momentarily of course. I always think I'm going to "relax" in January....but I don't think I know how to do that without feeling like I'm not doing enough.  As soon as February rolls around, the gloom wears off and life starts happening again. 

For those of you who know me well, know that I can be up-and-down with my feelings between wanting to be "normal speed" and "super speed" (for lack of a better way to describe it). For those who read my blog every so often, or the ones I happen to vent to on a "normal speed" day, there's always those times when all I want is to just be.  And those days I'll write about it.  I'm always going to have my days where I don't want to do this anymore. We all have those days. But the fact will always remain... this is my passion and passion is not something you can lose easily.  It's passion for my kids that drives me to be a better mom. It's passion for my husband that drives me to be a better wife. And it's passion for children fighting cancer that drives me to continue this mission. 

As I've mentioned before it's a balancing act every day every week even every hour. We must find those things in life that we are passionate about and use those to guide us and drive us we also have to find a healthy balance.  Isn't that what life is about?  So much of my work as a critical care nurse is also about balance. Balancing fluids, balancing medications, balancing the function of the body.  I realized I can apply this theory to all realms of life and thing will turn out pretty darn good. 

The girls are just amazing. They're doing so well in school, their activities and life in general. At Gabriella's first parent teacher conference for first grade, it was the week of our most recent scans in December. Needless to say it was a long restless week. Gabriella's teachers reported that she was doing so well in school that it brought tears to my eyes. And more tears and more tears. And they were happy tears. Tears of joy that my little girl has overcome so much such a short period of time. And all things that were revealed that week brought pure joy at that moment. Even thinking about it now makes my eyes well up. I'm always saying how it takes me a lot to cry these days but there's a difference between a sad cry and a joyous cry. These days joyous cries are easy to come by… And that is good. 

Bridget is an amazing little beauty herself. I thought Adam was the stubborn one in the family. Then I met Bridget when she turned 3 years old. Watch out world. This little strong minded soul has an agenda and timeframe all her own. Strong-willed, kindhearted, and very independent are the keywords that describe my Bridget.  No matter how much she challenges me in everyday life, I wouldn't change her for anything.  

We just returned from a trip to Seattle and before that, a huge donation was made to Lucile Packard for T Cell immunotherapy in honor of our warrior Sofia!  It feels so amazing to know that every dollar we raise goes to kickin' cancer's ass!  And that feels incredible! I'll write more about it later. 

Friday, January 16, 2015

Losing "her"

Different. Things are different. Life is different. That person that I was not even two years ago. She's slipping out of my hands. She's starting to blend back into society. Starting to worry about what everyone thinks and worry about things that used to not matter. That person that made me so strong. The person that gave me the strength to move ten thousand cars at one time....where is she going?  The writing came from such a magnificent place. A place where I never have gone before and a place that made me feel so vulnerable. I'm having trouble getting there again. I can't seem to find the right words or the right thoughts to straighten myself out. But I'm not sure I want to go there again. 

I am happy, so happy that I experienced this person I could be. I only wish it could have come about in another way. But I feel as if every day that goes by, she starts drifting further and further away. What was it?  What was the power I felt when Gabriella was going through treatment that I don't feel now?  It's an incredible strength you find when all that matters is saving that little life you created. Nothing else mattered. Nothing. I didn't care about what they said, didn't care about breaking the rules, didn't care about being anything but what I was....a fighter; a fighter for my daughter. It was so freeing. It focused me into being someone with one goal. The most important goal of my life.  Nothing else mattered. 

Now, life is changing. Life has changed. It's been almost two years. I am tired. I don't have the adrenaline or the anxiety that pushed me so incredibly hard through a year of madness. I'm drifting away from it. And I don't want to. Don't get me wrong, I wouldn't give up my daughters health or happiness for anything. It's me. I was fighting a war and nothing else mattered but winning that war. Now, I'm here continuing to fight with half the energy I had then. 

During Gabriella's treatment, I met so many children. So many kids fighting cancer that touched my life and affected me like I never knew they could. I followed their stories on social media, I messaged the parents, we kept in contact and I'd know every important moment in their lives. We would celebrate the highs and share tears in the lows. Now... I can't keep up.  There are too many god damned stories to follow. I don't have that kind of bandwidth. I thought I did. Maybe I'm just realizing now that I'm only human.  I struggle with it. I struggle that I can't be there and be that person I was.  I struggle that my life has been sucked into this world of pediatric cancer that has now completely overwhelmed me.....and I feel like I HAVE TO KEEP FIGHTING.  But I'm tired. Maybe it's just today because I'm sure tomorrow I'll jump right back into it.

It's been a constant stream of viruses this season.  One sickness after another. That will wear one down and I am worn down.  I used the be the kind of mom that when my kids would get sick, I wouldn't worry too much about it. I wasn't the kind of mom that took their temperature every 5 minutes or lost a lot of sleep over colds.  (I had babies and I was already loosing sleep.)  If they were warm, I'd feel their head and give them Tylenol.  If they had a cough, I'd turn the humidifier on and that was that. 

These days when Gabriella gets sick, I can feel every fiber of my being fighting that constant state of panic and anxiety we were in through treatment. I have to talk myself down every time I see her uncomfortable. It triggers. It triggers everything.  Adam and I have those moments when we look at each other and I can tell he's feeling it too.  Just a moment of an exchanged reassurance and we move on to clean up whatever vomit is on the ground, start a breathing treatment or give meds for a fever.  I know he realizes where it's coming from as well. 

I'm a restless soul. And when I can't keep up with it or give myself a moment to stop, I get frustrated, sometimes sad. 

Life is full of change. Any mom will know you will experience so much through motherhood. 
Even through pediatric cancer, there are times where a mom must embrace them, grow and be inspired through them all. 
Be inspired.