Wednesday, January 15, 2014

Fear....and CLEAR Scans!!!

"Fear, to a great extent, is born of a story we tell ourselves, and so I chose to tell myself a different story from the one women are told. I decided I was safe. I was strong. I was brave. Nothing could vanquish me. Insisting on this story was a form of mind control, but for the most part, it worked. Every time I heard a sound of unknown origin or felt something horrible cohering in my imagination, I pushed it away. I simply did not let myself become afraid. Fear begets fear. Power begets power. I willed myself to beget power. And it wasn't long before I actually wasn't afraid."  ~Cheryl Strayed

I hate ironing. (Geez, I feel like I'm using the word hate a lot these days.). But today when I was ironing my pants this morning while listening to my girls laugh and play while they got ready for the day, it was methodical.  I'd like to say I wasn't stressed or nervous and act like I'm so confident that the scans will be clear...but  there's always that lingering fear.
This is how the morning started.  These were the words I wrote and the one thing that strikes me as I sit here tonight is the word "fear".  The day started with the "5 more minutes" but not from my kids...from me.  After waking up to a slight headache from the subconscious stress that happens in my sleep which makes me clench my teeth together (yes dad, I should have worn my night guard), we start getting ready to face the day.  These days are never much fun and even with the ambien induced slumber the night before, sleep tries to elude me.  Yet, we carry on and face the day with the hopeful certainty that all will go well.  

Since Gabriella wasn't going to have general anesthesia today, she got to start the day with breakfast that daddy made.  It seemed like the start of any other day...chasing the girls around with tooth brushes, clothes, sox and hair brushes...something I will never stop appreciating.  Bridget was off to school (which is something she's not totally excited about these days) and being happily picked up by my friend Sandy to play with her buddies for the rest of the day so Adam and I could focus on G.  The drive up was great and we continued to prepare G for her MRI without anesthesia.  We've been talking to her about it for the last couple of weeks and were pretty confident that she could lie still the whole time.  Check in was easy...everything seemed easy...we had the top notch crew with a fantastic child life specialist and procedure nurse...right up until she handed the IV over to another nurse who thought she could get it in the first shot. I saw the missed IV coming but wasn't able to stop it before it happened. But the second attempt was successful and on we went. G got to pick out a movie (Despicable Me) that they would play in these special goggles and she was pretty excited about that. Adam was able to sit next to her during the procedure and they actually thought she had fallen asleep because she was so still and quiet during the whole thing. They asked her after why she didn't respond to the questions and she said she just wanted to be still. That what she was told and she made sure she complied.

I got the pleasure of visiting with Bill, our Team G Ambassador, who came just to support us.  I didn't realize how much I appreciated the support until we got to talking.  The conversation of "fear" came up and it made me realize how powerful our minds can be.  I realized this when G was first diagnosed and our world was flipped upside down.  I had come home to be with Bridget for the night while Adam stayed at the hospital with Gabriella after she got her port placed.  Driving back the next day, I was overcome with thoughts...incredibly crazy thoughts and thinking what really was reality.  I wasn't sure and couldn't wrap my head around anything that was going on.  My mind kept questioning reality and wandering...but I let it.  I ended up feeling completely panicked and it overcame me.... to the point where I should have probably pulled over and not driven.  But I needed to see my G.  Since that day, I decided to never let my mind and thoughts have that much control over me.  And it hasn't.  It's amazing what is actually true "when you set your mind to it", whatever "it" possible.  I've always had this overwhelming fear of seaweed.  It's kind of funny.  When I was about 7 years old and in Jr Guards at Capitola, our first day out was an ocean swim.  I remember it very clearly.  Not excited about it but confident in my swimming abilities, I went out.  Not too far into the swim, I saw what I thought "a monster".  I knew it was seaweed looming about 4 feet below me but it scared the ever-living daylights out of the point where I was yelling "monster" and climbing onto one of the guards paddle boards to get away from it.  Ever since that day, I have always hated the stuff.  I'm all about swimming "in" it and watching it from a far...but seeing it float on the surface brings me back to that day...that fear I felt.
After having my own children and going through G's treatment, my perspective and outlook has definitely changed.  I'm not as scared any more.  Every day, I overcome a little more and realize that I don't have to fear.  I can control it.  And I've proved it to myself a few times.  I've posted many times on Facebook about the whales right here in the Monterey Bay and going out to see them. So I'm back in the ocean (which I love but have always had a very respectable fear for) in a kayak with my sister and lord knows what swimming around below me searching for the whales.   We spotted them.  The experience of seeing a magnificent whale that was probably about 100 tons... was just incredible.  I'd like to say I was totally fearless...but there's a little worry there which mostly comes from being out in the open ocean with unpredictable wildlife all around....and being a mom with responsibilities and all.  It was an incredible experience and the sea, once again, captured me...but in a good way.  About a month later, I went back out.  This time by myself.  I wanted to capture that incredible moment again.  I wanted to experience the magnificence of seeing the whales and not being afraid.  I ended up paddling right into the middle of a kelp bed...and all of a sudden, I could feel the fear starting to creep up on me seeing that kelp linger below.  I paddled past it pretty quickly but I knew I had to go back.  So I did. I spotted about 10 otters lying around on the kelp and I watched them.  Sitting right in the middle of the kelp bed just watching...and realizing there was nothing to be afraid of.  It was healing.

SO....on with the amazing news....Gabriella's SCANS ARE CLEAR!!!!!!!!!!!!!  As a friend said to me today, that news will NEVER get old....never ever!!!!  (And I like to emphasize it with a few exclamation points at the end.  Heck, I could fill this whole page up with exclamation marks!!!!!!)
We met with Dr. Spunt who was taking over Gabriella's care while Dr. Marina was out.  She walked in the room with some apprehension and I was a bit worried.  While we are always expecting good news, we always have to prepare ourselves of the possibilities and don't want to be caught off guard.  She proceeded with the scans G had today and said "everything looks normal".  Just to make sure I heard her correctly, I asked her to repeat it again so I could take every word in.  "Everything looks normal".   We talked about G and how she was doing over all.  The one word we always use to describe her is "amazing".

Ready for her big day. 

Keeping busy as we wait.


Dinner with our awesome friends Sandy and Aaron and their three little girls,
who my girls just adore!  Thanks for dinner guys!  

Right before going to bed, I look around the house that looks like a bomb has gone off and I take a deep breath...and smile.  All I ever want is for my kids to be happy and healthy.  That's all that really matters.  The mess can be cleaned up tomorrow but my family is safe...and I am happy.

THANK YOU EVERYONE FOR ALL OF THE TEXTS, PHONE CALLS AND POSTS TODAY!!  We very much needed the support and were so SO thankful for all of you helping us get through this!  

Tuesday, January 14, 2014

Time to write

I wrote this a few weeks ago...
I've been feeling very compelled to write an update the blog the last few months but as always, time has escaped me.  Keeping up on the blog always kept me up late into the night.  This is when the house is quiet and I can do my best thinking.  Of course the night time hours are when I get my best work done but there are so many other things that have needed my attention.  The emotions and words to describe our story aren't coming to me as easily.   I'm sure it was due to feeling much more vulnerable during G's treatment and I was just able to let it out.   Excepting them was what I needed to get us through.  But sharing these things now just puts me back into that vulnerable position...and I'm not liking the vulnerable feeling.

I often read blogs of other mom's and the journey they are on with their own child.  I know where it comes from...the ability to just write freely about your situation, your feelings and your child.  You don't have your child's health anymore, the one important fact that everyone asks you when you are pregnant..."what do you want?"  I just wanted a healthy baby.  So, what have you got to loose by writing?  I got bored of saying the same thing over and over again and hearing myself say it.  Childhood cancer sucks.  Let me rephrase that...childhood cancer SUCKS.  But it needs to be heard over and over again.  Until we can better this world for children fighting cancer, it needs to be heard.  Some of these stories and blogs are so incredibly painful to read. It just never seems to end for some kids and the battle they fight every day just has to continue.  It's incredibly heartbreaking to read especially for the kids who aren't given a chance.  Can you imagine?  The day your child is diagnosed is the day that you learn you will have to bury your child...your own child.  Sometimes I just can't stand it.  It's not fair.  And every day I look at my girls, my two precious survivor and my sibling survivor, I am so thankful for our story.  This is then where some of the mommy guilt kicks in.  Am I not playing with my kids enough?  Do they need more from me and am I too busy trying to save all the other children while on my laptop?  I don't know.  There are constant questions and always a better answer to them.  I just know that I'm doing the best I can.  But I will always try and do better.  

There are constant reminders of the emotional and traumatic year we went through.  During the year we put our head to the grindstone and did whatever we could to get our family through it.  I can only imagine it's like being a bull in a China shop. But the adrenaline is starting to wear off and I finally started to let my guard down just a little every day (except for scan days).  It's a good thing and it's a hard thing and something that's very hard to describe.  We didn't give ourselves much of a chance to be emotional and think about what we were actually putting our daughter through... and those things are trying to come up.  The thoughts are very real and very painful.  They don't come all at once because I feel if they did I wouldn't want to get out of bed.  They mostly come through when we look at past pictures of Gabriella during treatment.  They come when I look at the scars on her body, the little tips of her hair fried and bleached from chemo, or when she has an "owie" that can throw us into a panic questioning if the cancer could possibly return.  It also comes up when I'm at work, for obvious reasons.  Whenever I hear that my patients have cancer....or anything really... it just reminds me.  Of course, there are so many similarities.  I do my best to realize where its coming from but sometimes I'm not able to separate it.  The other day, I had to draw blood from a power port.  I had so much anxiety about it...and it wasn't even the actual procedure that was making me spin but the flashbacks that I've associated with this procedure. Twice a week, sometimes more, G would get her port accessed for blood work, chemo or anesthesia. I watched every single move her nurses would make and make sure they were doing it had to be the right amount of time for scrubbing her port so she wouldn't get an infection, the right dose of medication and the right chemo...all the way to the right flush with no air bubbles. I'd watch the end of that port like a hawk and make sure it didn't touch anything. If it did, they would need to scrub it for 10-15 more seconds.  All while I was trying to get through the simple task of drawing this patients blood brought me back to those draining days in the hospital.  

I've decided that worrying never did anyone any good and NEVER changed the outcome. So, I've decided to do the best I can to plan for the actual day...the logistics...and let the rest just be.  But I can't help but worry.  

I know she's going to be fine. She is just the picture of beauty and strength. 

This past week, the hospital has kept us busy with the usual...Adam spent hours on the phone making call after call talking with the manager of radiology, the anesthesia department, and our new sarcoma doctor from St. Jude's (since Dr. Marina is having family health to deal with and Dr. Aftandillian is on maternity leave) to make sure things were going to happen when they needed to and how they needed to and jumping to management to ask for the appropriate changes.  It's actually been better, thanks to Adam.  He is so dedicated to straightening these major stressors and inconveniences out so hopefully all families can benefit from a better system.  The "schedulers" basically hand over the phone to their superiors when Adam calls and once again, the answer, "that can't be done" has changed into something that could be worked out.  

The issue this time is to keep Gabriella from needing general anesthesia and coaching her to hold completely still in an MRI machine for about 30 minutes.  She has amazed us this whole time and we have no doubt that she will be able to do it.  BUT, just in case, our doctor planned for anesthesia to standby just in case she couldn't.  We would put her under right away and get the scans done.  This sounded like to ultimate plan, right?  Well, not according to these schedulers...whoever they are.  Anesthesia doesn't "standby" on any cases.  They either do the anesthesia or they don't and this is what we were told along with a cold "sorry" to follow.  If she can't do it without, we will have to come back in 10 days (just because that is the next available day) to have her scanned under anesthesia.  My G is so compliant and I know she will be awesome.  Fingers crossed.

Back to the blog.....

All the thinking and processing made me come to a realization that writing in this blog has been amazingly powerful through this whole experience.  I miss it when I'm not writing but appreciate the fact that life is "more normal".  I know we're "out of the storm" so to say, but this journey is a lifetime.  It doesn't come to an end.   I sometimes wonder who is still out there and I'm so grateful for the messages every so often letting me know that you are still engaged...still following our journey.  I am so thankful for all of the support that surrounds us especially in the stressful moments.  Trust me, I appreciate it all of the time but I'll take it whenever someone remembers the struggles and takes time to acknowledge those.  I just hope I can do the same for others and hope that our words can help someone else in a difficult time.  There is so much more I want to say.  But for now, I must sleep and get read for the day's events.

More to come....