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 spell...Mommy.....help 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!

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.

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:

https://instagram.com/p/1cfzF7tzh_/

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"....lol!  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 that....it'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 often....it'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 happened...you 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 family...it'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.    

Today

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.