Is Driving Scarier Than Cancer?

Today is a day I prayed for, dreamed about, visualized, and mentally willed into creation. It was at a time that today seemed so far away. It was more of a hope and a wish for a future that statistically had little chance of happening. It is the day Emily will get her driver’s license.

In a children’s oncology ward with my 3-year-old hooked up to tubes, IV’s, and broviacs, I would talk about the future. I would visualize the future I was praying for regardless of what the stats told me.

 I vividly remember telling 3-year-old Emily how cancer wasn’t going to be as scary as the day she got her license. I remember laughing and telling her how for “Mommy” that day was going to be waaay scarier! I wanted her to picture her future. To not give up fighting for her life because of the pain of the present.

It was at a time when I knew her will to live was paramount to her survival. 

In full transparency, that day seemed like more of an imaginative place so far in the future I couldn’t even feel it.  Most of the time I just prayed she would live until 7, the age a relapse was unlikely and I could finally resume breathing like a normal human again.

But 17?  Ten years beyond that? It was risky to ask for.

We are told in James 1:6 “But when you ask, you must believe and not doubt.”   The message translates that to, “Ask boldly, believing, without a second thought.”

It was bold to talk about the future as if it was a done deal. It was bold to stand in defiance of the facts.  It was bold to confidently paint a future for a child that she might never see.

I was scared, but I was bold. Bold is from an old English word that means “stout-hearted, brave, confident, strong.”  I believe we can be scared and brave. We can be scared and confident. We can be scared and strong.

Today I am scared and strong. Today I stood in the waiting room just after she passed her driver’s test and went in to get her license. A big sign on the door said parents and instructors had to wait outside. I did a double-take. “Wait, I can’t go in with her?” I had to hand her all of her 6-point identifications and send her off to a government agency without any windows to even see who she was talking to and just wait?!??!  As my mind struggled with this new independence I realized getting her license is more than an answered prayer, it’s a bold step into adulthood.  A world without me standing as her advocate by her side.  A world where she will need to stand boldly on her own.  I fully admit I have struggled with the idea that I might not get to be her college roommate and I might actually have to cross a state line to see my daughter. And that actually might not be every day or just whenever I want. 

How did I foreknow 14 years ago sitting in a hospital bed praying daily for my daughter’s survival that the day she got her license would be scarier?  Not just because she is driving and NJ drivers are insane, aggressive, and think 55 is really code for 95, but because it’s an inch (or giant leap!) into adulthood. At least in the hospital room, I was her voice. Now she gets to speak for herself.  In the hospital room, I made all the decisions. Now she gets to make decisions.   How, in the midst of uncontrollable cancer, did I feel more in control?

So today I am filled with gratefulness and sadness. A strange and confusing combination of emotions that have settled into the pit of my stomach.

Sadness that every day is one day closer to her living a life as a grown-up. Where she will have her own house, her own family, and she will “visit” me and not live with me.  My heart aches even as I write this.

And gratefulness that today is the day that is scarier than cancer. Today is the day we dreamed of, prayed for, and laughed about.

Today is a reminder of just how far we’ve come.

Today is the day my miracle kid got her license.

An Emotional Day and a Great Big THANK YOU!

Today is an emotional and exciting day for me.  On January 2, 2017 I created a Go Fund Me page at the encouragement of some friends and after a lot of prayer.  See, I wanted to write this book. A book I felt God calling me to write, that I really didn’t want to write, but that I knew could help other families facing a childhood cancer diagnosis.

I was still broke and trying to get back on my feet after 6 years going through a domestic violence divorce, Emily’s cancer, and a move across the country to be closer to family. I was rebuilding my business, living paycheck to paycheck, and while I had enough money to cover my bills, I didn’t have the thousands of dollars it was going to take to publish a book.  See, I didn’t just want a book. I wanted one that was beautiful to look at and read, one that had pictures of our journey, and would inspire hope in the reader’s heart. I was going to need an editor, a graphic artist, buy an ISBN number and purchase initial copies to give out.  

We raised almost $4,000 and one of the first people who donated was my daughter’s surgeon. I cried.  People believed in my vision.

Many, many, many people encouraged me to start a nonprofit instead.  I knew that was not God’s plan for me.  See, there’s already a teeny tiny pot of money available for the childhood cancer world. I didn’t want to be sticking my hand in there too. I wanted to be giving to that pot instead. I knew companies like Amazon, Apple and Disney were able to make huge contributions to those very nonprofits because of their businesses. I wanted to be able to do that too. I started by doing lots of Buy one Donate one events and donating books to families and hospitals. I committed to donating a portion of the proceeds from MCF book sales to support nonprofits that make cancer fun for children and their families. 

Now Making Cancer Fun isn’t Amazon or Apple (yet!)  but today marks a significant day. Today marks the day I can give my first real donation. And I am so excited about the nonprofit chosen.

Out of Zion is a free creative arts program for children with medical and special needs. Kosj and Jaymi created this program in honor of their beautiful son Zion, who fought an aggressive brain tumor for one year before crossing over to be with his Creator. Zion loved music and creative arts, always singing along, dancing and exploring any instrument he could get his hands on. Out of Zion was born out of a calling on their family to extend the love, joy and faith that their son embodied. Kosj and Jaymi know first hand what it is like to have a child facing a difficult diagnosis and medical treatment. Their desire is to create a joyful and supportive environment for children and their families who are fighting similar battles while carrying on Zion’s legacy. Through Out of Zion,  Zion continues to inspire and bring hope to children, parents and entire families who need it the most.

Now many of you might not know, but my background is in theatre. At three I wanted to be a ballerina. When I hit 5’8″ at thirteen I decided instead I wanted to be an actress. I went to college, majored in Drama and my first job out of college was with a touring children’s theater.  Out of Zion combines my two loves: making cancer fun for kids and the arts. I can think of no better way to honor God (who I believe was preparing me for making cancer fun from that very first improvisation class) then to support a beautiful, impactful organization, and a family that stands for everything I believe in.

So whether you have purchased my book, shared a post, left a review, or just prayed for me along the way, THANK YOU. Thank you for believing in me and my vision, Thank you for believing FUN is a viable and important coping skill. Thank you for being part of this journey.

This is just the beginning. I have a second exciting product coming out (hopefully this spring!) and it is my prayer each new product will bring more revenue to give back bigger and bigger each time, supporting lots of nonprofits along the way.

So while $300 may not seem like much, for me it’s huge. Like Confucius said, “The man who moves a mountain begins by carrying away small stones.”  This is my small stone.

PS Here’s a peak at the work they do:

It’s a Girl!

Emily doesn’t love me.

At least this is what she tells me on a regular basis.  Followed by she hates me, she never wants to see me again, I’m mean, I’m stupid, and the list goes on.  (Now I could go off on a tangent as to where she hears this kind of talk but I’ll leave that to another blog…)

Coming from a 14 year old I would be mentally & emotionally prepared that this is a string of hormone induced ridiculousness of a teenager exerting their control & independence in the world. But at 4! Nothing has prepared me for the string of hurtfulness and anger bursting forth my 4 year olds mouth.  I secretly wonder if this is pay back for every mean thing I ever said to my mother. If it is, I better fasten my seat belt. Knowing my mouth, I’m in store for a long bumpy ride.

Reasons Emily does not love me:

• I won’t let her eat a marshmallow for breakfast
• I made her take a bath
• I won’t let her buy Yoplait yogurt at King Soopers. She wants peach yogurt. I point out all the organic, nutritious, non-chemical laden peach yogurts she can have. She wants Yoplait (maybe because the package is pink or maybe because she just wants to torment me) “It’s junk” I say calmly. “You can’t have it.”   “I don’t love you. I want to eat junk. I want to be sick!” she defiantly says with her hands on her hips.
• I make her take her Retinoic Acid pills. And then tell her “No” when she goes to spit them out after only holding them in her mouth & not actually chewing them to get the medicine out.
• I made her wear her coat. It was 54 degrees. Yes, I’m a mean mom.
• I won’t take her for High Tea after she screamed on the top of her lungs in heritage square so loudly the daughter of my friend Anne actually covered her ears. Oh that and she started smacking me for talking to Anne.
• I won’t cook her pancakes at 8:30 at night after I just made a veggie quiche, a Mexican quiche, and two homemade deli style baked sandwiches and cleaned the whole kitchen.
• I won’t leave Aunt Chrissy’s house within the 1^st 15 min of arriving to see my Uncle Frank & Aunt Valentina who I haven’t seen in over 5 years. (after an hour fit I finally was tortured into leaving early anyway)
• I won’t take her to Casa Bonita after she got in the car & started screaming & whining in her words “just because.”
• Every time I won’t take her to Starbucks to buy a strawberry banana $4 smoothie that she takes 2 sips of, a fruit & granola $4 yogurt parfait she takes 2 bites of, a $3 green machine she takes 1 swig of, or a $5 bowl of fruit she chews a half of piece of.
• I make her clean a broviac when she does take a bath. And I scrub the full 15 seconds with the alcohol Cloraprep that burns her skin so it doesn’t get infected (ok this one maybe I understand)
• I cut her toes nails. (although in my defense this is such a fight it is only after they become daggers that literally could impale a person resulting in death if she kicked them)
• I won’t let her eat chocolate cake for dinner.
• I push her Acyclovir anti-virus medicine thru her tube 3x a day. 
• I can’t read her mind to know which song she wants to hear in the car when she sings “if you… dum um um um…you know mom! You know!”
• I tell her she can’t scream every morning when she wakes up just because she wants to.
• I made her put her blood pressure cuff on in the Intensive Care Unit. She screamed “I want my dad” and then told the RN to call him because once he got there he wouldn’t make her put the cuff on.
• I wouldn’t buy her 2 Bernstein bear books, only one, at Tattered Covered and she NEEEDED two and HAD TO HAVE two and when she threw herself on the floor in a fit we left without any books and I carried her 4 blocks down 16^th street mall with her screaming and flailing herself around while everyone we passed starred & I’m sure judged me as to why I couldn’t control my child (well at least the ones who never had kids anyway did)
• I won’t change my plans in the middle of the day to take her to Chuck E Cheese, Mr. Biggs, the Bounce Place, tattered Covered, The Art Workshop, Red Robin, or wherever else she decides on the spur of the moment she just HAS to go to.

 

And the list goes on.

• I make her wear her orthotics.
• I won’t turn the radio up to a blasting level so she can hear it because she refuses to wear her ear jewelry, hearing helpers, hearing aids or whatever other term we’re currently using to make them seem fun.
• I make her brush her teeth. 2 times a day!
• I won’t let her open the car door when she’s having a fit while I’m driving. (Thank you Kwan for showing me how to child lock the doors!)  
• I make her get dressed. In clean clothes.
• I make her wash her face, wash her hair, and wash her hands on a regular basis.
• I make her take her meds, drink her vitamin juice, and flush her IV lines.
• I won’t let her play play dough on the living room carpet without a mat. (She explains her dad lets her play play dough on the glass table over the carpet. I tell her when we have a glass table she can do that here too)

 

Is it because she spent almost a year in the hospital getting catered to 24/7 that she now can’t “deal” with the “real world?” Is it because every time she did get to leave the hospital for a few days at a time we made a big deal to do lots of fun things that now she thinks every day is a “special day” for a special outing, gift, treat, or adventure? Is it because she deals with the same inconsistently every child of divorce likely faces where there are rules at one parent’s house that aren’t at the others? (She reminds me on a regular basis there are no rules at her dad’s. And then every time I tell her “No” she demands I call him and take her there. Now outside of the obvious, I can’t call him because I have a protection order against him because he wants to kill me but I can’t really explain that to a 4 year old. So I just say “I’m sorry Em, that’s not how it works. You’ll see your dad on….” Which just ignites how mean, stupid, & nasty I am and how much she doesn’t love me.  Or is it because this is the cycle of pay back in life? Your parent’s sweet revenge.

 I remember when the Doctor 1^st told me I was having a girl.  NO! I thought! I can’t have a girl. There is only 1 crazy woman in my house. ME! I can’t handle two! I know me. I couldn’t even live with girls in college.  I refused to accept I was having a girl. I picked out a boy’s name, boys clothes, and a generic nursery set. People excitedly would ask the age old “What are you having?”  “The doctors say it’s a girl but I’m having a boy” I would respond. After all, I was sick and my mother was only sick with boys.  My skin was breaking out & my non-scientific study in the skin care market for almost a decade would indicate a boy. And most importantly girls were too mentally and emotionally challenging for me. God wouldn’t give me a girl.  As the doctor pulled her out of my belly in a very unplanned c-section the1st thing I remember asking was “What is it?”  “It’s a girl!” to which my ex husband leaned over and said “Do you believe them now?”

A girl. She was the most beautiful creature I had ever seen. A girl. Pinks & purples. Dresses & bows. A 4 year old with a purse fetish and me, her mom, who would rather pull off my toe nails then go shopping.  A girl. Cliques and sleepovers and cattiness, and BFF’s.  Girl scouts, dance class & gymnastics (oh who am I kidding that kid will be waaay too tall for gymnastics). A girl. A gender that has a rare mutation where a phone can stay attached to their ear for hours and hours, days and even months without discomfort. A girl. Dating and boys and prom dresses and 1^st kisses, and pregnancy and STD’s and date rape.  It’s been said that when boys get mad at each other they just beat each other up. Girls give each other eating disorders.

Of course shouldn’t have been worried. After all, I’m a better mom then my mom. I have it together. I’m more emotionally stable. I am not a product of some crazy 60’s hippy generation. I’m an 80’s baby.  Capitalism, Self Sufficiency, and Success at its finest.  I have read “Love & Logic,” “Babywise,” and “Principles of Success.”  I will run my home and my family with the same ease, efficiency, and effectiveness I have run a $300K+ business. I remind myself I mentor hundreds of women around the country.  I work with women every day!  I have lots of girlfriends who I adore and love!  One little girl can’t be that hard. I will be the model mom. She will always be neatly dressed in well matched clothes & a cute bow in her perfectly groomed hair. My house will never get dirty, my dishes will clean themselves & my laundry will fold & put itself away. My car will not have cheerios, juice boxes and diapers spilling over in the backseat. I will always have a fully stocked diaper/kid bag in my trunk with everything I might ever need or want at my finger tips. Nutritious Organic home cooked meals will miraculously appear on my dinner table every night.  The color coded calendar on my fridge will reflect a life of balance with church time;  personal time for yoga, prayer, friends, and happy hours; work time where I will have more than enough emotional energy & stamina to grow my business to my $1million goal; and a equal balance of activities to nurture a young creative growing mind, play dates, park outings, library programs, nature programs, and seasonal children’s events which  I have carefully selected out of kidspages.org to foster intellect, creativity and physically activity. 

Then, of course, Emily will grow up singing my praises about how blessed and lucky she is God chose me to be her mom (as I remind myself regularly when I am on my knees begging God for grace & patience).

Oh how I wish I lived in my fantasy world.  Where even as I type this I can hear birds singing in the background, a happy dog barking (not that yappy devil dog that lives next door that I want to bunt kick across the cud-a-sac because it barks 15 hours a day when it’s owners leave it outside and they are nowhere to be found) but a cute happy dog. And somehow there is magically a stream flowing in my backyard and fish jumping up to dance.

Back to reality. It’s 5:30 am (which in my world is the middle of the night) and I am wide awake because Emily woke up an hour ago screaming that she wanted  “drish.”  When I couldn’t understand …did she want gold fish? (was she hungry?)  did she want to come lay in my bed? (Maybe she was saying “dred?”) Which just made her angrier until I finally deciphered “my drish” into” my dress…” which really wasn’t a dress at all but my black and white silk shirt that she has recently become attached to “the one you wear ALLLL the time!” she screamed at me (for the record I think I’ve worn it once in the last 4 months.) and then rolled herself up in it and went back to sleep.  And now here I am typing & wondering how did my life get here.

We go to therapy tomorrow at 2pm.  I think we both need it.

I CAN’T HEAR YOU….AND NOW NEITHER CAN EM.

I posted this on Em’s Fan Page 4-22-10 during her Bone Marrow Transplant Workup Tests…..we just got fitted yesterday for her hearing aids …thought this would be an appropriate re-post 🙂

BMT workup Update!

So after 10 days of my daughter’s father refusing to communicate through our attorney’s in regard to Emily’s BMT workup week today we had yet another fiasco. Long story short I took her to the dentist (after a nice confrontation in the hospital hallway…and yes I still have 2 protection orders) and her teeth are fabulous!!! She was scared to go to the dentist. It took a ½ hour for the transport people to figure out how to get 1 kid, 1 wagon, 1 “pole” with a feeding tube and fluids, 1 mom and a gorilla and pig (they were the stuffed animals who made the “cut” this morning and got to go on a trip to the super cool fun dentist) into a van to get her to the dentist.

When we got in the room we decided the x ray machine looked like an ostrich head. I was, of course, jealous it “kissed” her on her nose, chin and cheek and didn’t kiss me! No fair! I said. I told her there was no way she could bite on the black cookie (x-ray film) and hold it in her mouth. I was sure she couldn’t. She grinned and held her bite. Then laughed and laughed that she knew she could do it! We counted gorilla’s teeth… he only had 15 …she had 20…hers were even…his weren’t …even funnier.

Then they said she brushes better than some 7 year olds they’ve seen. (Insert mom pride here!) I have to say it was my 1st time sitting as the parent watching her brush her teeth while the dentist watched her and thinking…come on… do it right kid! Show them I’m a good parent and I’ve taught you to brush your teeth the right way….” …phew …I passed

EKG & Echo’s….results are in ….they are good!

Hearing test. 1st test comes back that her results are off from what they were in December. Ok let’s do more testing. 2nd test. Her ear is healthy so it’s not from the Corona virus she has (yes it’s actually called Corona virus….it’s basically a cold) 3rd test. Emily sits in the chair. Little earphone on her tiny ears. She has to place a toy into the box every time she hears the “bird” chirp in her ear. I see the doctor writing notes. I don’t know what they mean however I’m not thinking it’s good. Not sure why…I mean maybe those circles are good circles.

Then they put the little mini ear phone on her ear bone. I hear the high “beep” tone. I hear it again. And then a 3rd time. Each time louder. Em sits there holding the block waiting to hear the beep. I turn her feeding tube off. It must be that crunch crunch sound it makes as it turns that’s interfering with her being able to hear that beep.

Again, I hear the beep. I hear it a little louder. A little louder. On the 4th one Em puts the block in the box. She doesn’t know she didn’t hear the 1st 3. It’s all a game to her. I put my hand to my mouth. I’m big into energy. I don’t want my sudden fear to “reach” her.

After the “game” is over I look the doctor. I’m holding back tears. She confirms. Emily has suffered “moderate” hearing loss. It’s from her 2 rounds of that awful Cisplatin chemotherapy. It’s known for hearing loss.

Ok I think, so she can’t hear a high pitch. No biggie right. Then the doctor continues. It could get worse. They don’t know if it will, can’t stop it if it does, and can’t reverse this damage that is now permanent. Ok I think, well it won’t get worse. Like everything else I’ll just make up my mind it won’t. I’m not crying. Em can tell I’m rattled. She keeps fusing and won’t sit still. She’s picking up on my energy. She’ll need 2 hearing aids. One of each ear. What?!?!? I’m sorry I must have heard wrong now. What did you just say? How can this be? If we didn’t even know she had hearing loss until your stupid little birdie beeping test then why would she need a hearing aid? Obviously it’s not affecting her day to day. Well, I learn, actually it is. She hears fish…but only hears the “ish.” Because she used to hear the “F” her brain fills in the blank. She is missing sounds and not realizing it. It will help her fill in those gaps. I hate cancer.

Well it can’t be that bad I mean I’ve seen the commercials hearing aids are like little tiny nothings now…no one will see them. Wrong. Kids her age need the big ones that hook behind her ear. She won’t be able to get a small little in the ear kind until she’s 15 or so. Seriously? Isn’t there a surgery or something they can do to fix these little “inner ear hairs???” I mean it’s 2010!!! Nope. Science is working on it. Nothing yet. Maybe in the future. Right now she is stuck with ear jewelry.

Em is now getting upset because she doesn’t understand what we are talking about. “Tell me!” she cries. She always says this to me when she knows we’re talking about treatment for her. How do I explain to her she can’t hear things she thinks she can? After all I just praised her at how fabulous she did at her “beeping” game. I hate cancer. The doctor shows her a picture of an ear …it shows the inner ear. I explain that she has little “hairs’ in her ears that help her hear. I wiggle my fingers to demonstrate the little hairs. I say they hear high beeps [said in a high voice]. And they hear low beeps [said in a low voice] High beeps [high voice] low beeps [low voice]. I ask …”so when we take our GCSF (the white blood stimulator that we inject into her leg after chemo) what does it do?” She knows this answer “wake up!!” she yells….that’s right ….it goes though her body and tells her white blood to WAKE UP! “Well” I explain “your little ear hairs got tired from the chemo. It made them {insert yawn} and fall asleep” {stop wiggling fingers to show they are sleeping}. So we need to wake them up because they can’t hear the high beeps!! So we get ear jewelry that you wear on your ears and it goes into your ear and says “WAKE UP!” {Lift fingers to show hair is now awake} so it goes asleep {drop fingers] and it wakes up {lift fingers}. This makes sense to her but I’m not fully convinced she’s ok with it. I’m not. I hate cancer.

We leave the room and I walk her down the 15 hundred mile wake back to her room. Holding back tears. I don’t want to see her little bald head touting two large hearing aids. I don’t want her to have a visible reminder every day of her life about her cancer. I want to complete her treatment. Be done. And 10 years from now think…that was a life time ago. Not be reminded regularly that I hate cancer. I don’t want people to look at her. My thoughts rush to her in school. I don’t want kids to make fun of her. I don’t want her to be dateless. I don’t want her to be self conscious. To think she is anything less than perfect. I am keenly aware I seem most upset about “what other people will think.” This is odd for me. I don’t usually care what other people think. She doesn’t ever want to grow her hair back and has told me on more than one occasion if it grows back she is cutting it off. So maybe she won’t care she has hearing aids. I do. I wonder what other long term side effects she will have. Will I look back at these effects and wonder if the cure will be worth the quality of life she will have? Or will these “effects” just be such a part of her she won’t know any different “quality of life.” After all she asked the ER RN for her oxyicodone and atavan upon admittance. She knows the words broviac, CAT scan, catheter, chest tube, tumor, BMT, and biopsy. Maybe her world is so different already a hearing aid or two will be nothing.

I get back to the 7th floor. The kid in the room next to Emily is dying. The colors of life are taped to their door. It’s from the chaplain’s bereavement services.

Suddenly a hearing aid doesn’t seem so bad. I think they even come in some cool colors now.

EM HAS EYELASHES

Written 8-6-10

Emily has eyelashes.

It’s funny how something so “normal” seems to strange. I have gotten so used to seeing her without hair that the short rim of dark lashes around her gray/green eyes look odd.

I remember when her hair first fell out.  She had this head full of crazy curly Shirley temple golden brown hair. It was her “signature.” Everywhere we went people would comment on her hair.  When the doctor called me to finally give me the results of her biopsy and confirmed my worst fears…yes it she had cancer. I remember asking her if her hair would fall out.  I was embarrassed I was asking about something so trivial in the same conversation of “yes your child has cancer.” I was afraid she would think I was vain, insensitive, or just nuts.  She actually responded in such a kind and gentle way.  Yes she said – she would lose her hair.  I acknowledged how ridiculous of a question that was.  I remember her saying “No it’s not…it’s the outward sign of her cancer.”I didn’t feel so stupid after that.

I remember the first night they transferred us from the PICU up to the “bear” floor.  I was walking down the hall with my cousin and a teenager was walking in front of us who was completely bald. I remember that tight feeling in my chest. A stark slap of reality. I am on a cancer floor. I have a child with cancer. I will be the mom of a baldy.

 

I remember cutting her hair short.  Curly Q’s all over her head.  And then the hair started to fall out. Everywhere. It was gross. So we cut it again. Shorter.  A pixie cut.  And yet I couldn’t bring myself to shave it.  She sat in my lap as I pulled the pieces out and with a sharp orange scissor. I cropped it close to her head. I cried.  I tried not to. I didn’t want her to cry too.  She didn’t.  “Why are you crying?” she asked me. I just shook my head and tried to hold back the tears.  I put a thick piece of curls in a lab bag. I wanted to save it. The nurses told me her hair – when it grew back – might grow in differently. I wanted to remember what my daughter was before she was a cancer kid. When she was innocent and naive to the medical world. 

When it was all over she sat on the bed and brushed the locks of hair I had cut. That night I laid in the parent bed across the room while she was in her hospital bed and sobbed.  I remember her leaning over her bed — looking squarely at me and saying “Mommy why are you crying? I’m right here.”  It was if God spoke to me through her at that instant and said “She’s not going anywhere.” It’s one of those moments forever captured in a mental picture in my mind.

Now fast forward 9 months and I am so used to seeing her without hair I am not sure how to react watching the small patches that are slowly growing back on her head.  She had short dark eyelashes.  And just tufts of eyebrow patches.  Her hair before her transplant had started to grow back in a dark buzz look even and all over her head. It was different though. It only lasted a few days and I knew it was going to fall out again as I watched the chemo drip into her over 96 hours.  This time though the hair will stay.  There is no more chemo. It’s done.  She has one day left of radiation and then that’s done.  Her hair will grow back and she will look “normal” again.  Her bald head is a badge of courage everywhere she goes. She doesn’t wear hats or scarves or anything. She loves her bald head and keeps reminding me as I check out the new patchy hair growth that she will be shaving it off as it grows back. 

Right now she has the same hair as her dad. Lots of hair in a horseshoes around the back o f her head. And then a 2 inch tuff off the top.  So my ex and my daughter now share the same hair line.  I have asked the doctors’ 3x will it all grow in or are these bald patches permanent? They keep assuring me it will just grow in at different times but eventually will all grow in. I’m not convinced yet.

And at the same time I have to admit her hair growing back scares me.  It’s a reminder that chemo is over and we are onto the next part of her therapy.  Bio therapy.   I just had the consult with her doctors today and have the consent forms sitting in my bag to sign and bring back on Tuesday.  Bio Therapy (also known as immune therapy) lasts 6 months with 5 treatments.  She’ll go into the hospital on a Monday and stay the week. She’ll check out Friday and then have a 3 week break.  She’ll only need to come back to the clinic 1 x the following week and then only if she is sick.  The kids usually do great at home and after September 9^th (her 100^th day past post bone marrow transplant) her mask comes off and she can start to resume a “normal” life.  ‘

Bio therapy is hard. It’s painful. Really painful. The kids are put on a narcotic drip at admission. 2 of the 5 rounds are done in the PICU from the beginning (because so many kids end up being transferred, they just start them there now) Em will be the 3^rd kid at this hospital getting this particular round of therapy. It’s not FDA approved yet. Kids who make it all the way through increase their long term survival rate 15-20%

I am told they will do whatever they have to do to keep her alive to get the drugs into her. Blood pressure meds, ventilators, ART lines, it’s a race against time.  The medicine goes in over 10 hours. If she starts to react they slow it down. It has to be in within 20 hours. Whatever doesn’t make it in in 20 hours is discarded and you start over the next day.  Obviously the more that goes in the higher her cure rate.  I sign a 14 page consent packet.  Pages of side effects.  All scary. A relapse scarier. I sign away.

I should be excited her hair is growing back. It means the end of chemo.  I’m not.  I know chemo. It’s comfortable. I know what to expect. Bio therapy is scary. It’s new territory. The unknown.  And then when it’s over….you wait. The scariest part of all.  You scan. You wait. You scan. You wait. You try to live without fear and you cherish life in a way most people will never understand.  I guess it’s a choice to be grateful or resentful. I’m not sure which choice I’ll make yet.

Those dark patches of hair represent the “real world.” Shampoo, haircuts, and bows. …they are all part of the “real world.” Washing your 4 year olds head with a wash cloth? That is not.  My reality is skewed. The real world is outside the 4 walls of a hospital room.  The real world, where dealing with “life” right now actually feels more overwhelming then dealing with cancer.  Here the nurses are our family.  The cafeteria my kitchen.  The parking lot my garage. It’s my life.  Hair…that’s not my life.

I look at her dark patchy tufts of hair. I wonder what she will look like. The bald child I see now is not the one I brought to the Emergency room almost a year ago. That child didn’t have nightmares of getting poked. That child didn’t have yellow tinged bruises on her legs that never seem to fully go away from week after week of insulfon needles being placed. That child didn’t have a “diamond cut” scar across her belly or holes where chest tubes stayed for months. That child didn’t know how to draw her own blood back out of a central line implanted in her chest or know that when she is “puky” she wants Atavan and when she is in pain she wants Oxycodone. That child didn’t know the difference between an x-ray, a CAT scan and a MIBG scan.  That child didn’t say “what? What?” all the time and didn’t need hearing aids.  That child had hair.

 I will miss kissing her bald head. I will miss that visible reminder that Emily is different.  Her bald head represents her strength to me. Her will to win. Her courage. Hair will make her like every other kid.  And as strange as it sounds I’m glad she’s not. I’m glad she’s a fighter. I’m glad she’s got a “reputation” for being strong willed and being the only 3 year old to pull out her own chest tube. I’m glad she is young enough to hopefully not remember the bad parts and old enough to remember she is a Miracle Kid and she can do anything.  I wonder how having cancer will mold who she will become. How it will shape her destiny in a way that having hair never would have.  Because even after her hair grows back…however it grows back, light, dark, straight, or curly….she will always be my brave, beautiful, bald kid.  

Reality….here we come.

I’M SORRY….

It’s 2am. I log onto facebook (yes I’m addicted) I see the post. One of the families I’ve become close to lost their beautiful daughter to cancer tonight. It had been a LOOONG battle. Reality hits you in the face & a mental battle starts. A mental battle not to let fear win.

Emily has been doing so well it’s easy to “forget” she has cancer. HAD cancer. Well, I guess her doctors would say she still “has” cancer. She is still undergoing cancer treatment for 6 more months. She still is on the “Cancer Kid Roster” and her “Pediatrician” is an Oncologist. So I guess technically she “has” cancer. Her last scan was clear. Her last bone marrow aspirate was clear. I tell her she HAD cancer. She doesn’t anymore. Now we just keep fighting to keep it from coming back.

We’ve been at home 2 weeks. It seems like forever. She’s playing, laughing, and constantly checking the front window to see if our new neighbors are outside with their 2 little girls. Kids she can play with. Every day she asks if “the girls” will be outside. Desperate for children to play with my heart aches at her plead for normalcy. These are the most “normal” two weeks we’ve had in almost 10 months. Well, she still won’t eat and carries around a canvas bag holding the TPN bag that infuses nutrients into her 12 hours a day– keeping her alive intravenously. But her hair is growing back. She hasn’t had an infection in over a month. No more daily temp checks. We’re down to just 7 meds a day. And I’ve gotten used to the “whats?” as we wait on her hearing aids. It’s so easy to think we are in the clear.

And then I read that post at 2am. Another child has died. That’s the 4th in the span of just a few months. And those are only the ones I know. Another beautiful child, who fought and fought and lived the last year of her life in a hospital bed, to lose her battle. A family that prayed, cried, and kept a positive attitude. A mother who lost the baby that she once held in her arms and imagined her future and who she would become.

Reality slaps you in the face at 2am. The scans may be clean but my child has cancer. Cancer kills. Cancer takes dreams and goals and futures without bias. Cancer kills children. Children who fight and win the battles only to lose the war. If the devil created a disease cancer would be it. It quietly kills your spirit before it kills your body. Cancer. I have emotionally detached myself from the word. I am careful what I say. What words I give power too. “Emily is undergoing cancer treatment.” “Emily had a tumor.” “Emily’s scans are clear of cancer.” “Emily will be a person who had cancer.” Emily. My child. The only saving grace from an 8 year abusive marriage. The child who gave me the will to keep going when I was so deep in depression at the end of my marriage I didn’t care about anything, even getting out of bed. Emily, the child who was my reason for putting one foot in front of the other when my world collapsed, her dad was stalking me, and I went to bed each night with my alarm key and cell phone next to my pillow. The child that each day gives me a reason to not give up.

I climb into the toddler bed with her & just hold her and listen to her sleep. Tears streaming and asking God to forgive me for the moments that I get frustrated with her & don’t appreciate every SECOND I have with her. This past week flashes before me.

Getting frustrated that it was 10pm and she STILL wouldn’t go to sleep. That every time I left the room she’d start crying and get of bed.

“Em I told you I was going downstairs to check on my bagel” ~ “ BUT I MISSED YOU!”
“Em I told you I was going to the bathroom” ~ “BUT I NEED YOU!”
“Em I told you I was going to brush my teeth” ~ “BUT I COULDN’T SEE YOU!”
“Em I told you I was going to wash my face” ~ “BUT I DIDN’T WANT YOU TO!”
“Em I told you not to get out of bed!” ~ “BUT I HAD TOO!”

And then the 1 millionth time she said “Mommy??!!???”
and I said, “Em just stop! Don’t’ ask me another question!”

And then finally when I said, “Em, I’m beat I’m going to bed.”
And she asked. “Mommy what if I need to puke can I call you?”
“Yes Em.”
“Will you wake up and hear me?”
“Yes Em.”
“Will you come get me?”
“ Yes Em.”
“Will you get a me a puke bucket?”
“Yes Em, just go to sleep!”
“ Mommy?”
“ Yes Em,?” with mounting exasperation.
“ Will you get me a tissue to wipe my face if I puke?”
“No Em just use your sheets!”

But now it’s 2am. I’m overcome with guilt and begging God to forgive me I wasn’t grateful I was tucking her into her own bed and not a hospital bed.

Forgive me God.

I’m sorry for every time I resent having to get 4 syringes, 2 needles, 2 vitamin vials, blue connectors, saline, a pump, a new battery, tubing that I can never get to connect properly and end up screaming at and wanting to throw across the room, a giant bag of TPN and more alcohol prep pads then I can count. Instead of being grateful that science has created a way to keep my child alive while her stomach has shrunk so small that when she doesn’t eat she gets a hunger pain and when she does eat she still gets pain because her stomach has literally “forgotten” how to eat.

I’m sorry for every time I have to change a diaper and I’m mad she isn’t potty trained anymore after spending almost 9 months in a hospital bed. Instead of being grateful that pee and poop isn’t blood and vomit.

I’m sorry I resent that I can’t take her out to eat, go to pirate’s cove (because yes, I want to go) go to the outdoor summer music concerts (because yes, I want to go) or go on a picnic (still me who wants to go). Instead of being grateful I can sit on the couch, cuddle he,r and read her a book.

I’m sorry I resent watching my checking account dwindle from the cost of gas and having to drive back and forth to the hospital multiple times each week. Or the swipe, swipe of my debit card from all the meals I’ve had to buy at the hospital while we are there. Instead of being grateful I can drive back and forth and that I have a car to do that (instead of the families I see outside the hospital waiting for the bus), grateful I have money and people who’ve helped with gas, and that going back and forth means she’s winning her battle and isn’t in the PICU dying.

I’m sorry I sometimes feel relief even though she is crying hysterically that she has to go stay with her dad. Even when I’ve had to give her 2 business cards with my picture (in case she loses one) and promise multiple times I will call her and go over just as many times when I will pick her up, and have to give her a “mommy kiss” in her palm because a mommy kiss can’t be wiped off, and I watch her cry and ask for “just one more hug,” and then sob as her dad takes her. Because her going means I will have chance to get done what I need done, and sometimes it’s work but sometimes…. it’s just a break with my friends… and that’s when I feel even more guilty. Instead of being grateful that it’s only 10 days a month not 15.

I’m sorry I resent seeing piles and piles of toys scattered all over my family room and remind myself of my vow that I will be grateful for those bags of toys because toys mean Emily’s home with me.

I’m sorry I resent I turned down 3 dates in 2 weeks because I had her with me and I secretly dream of a “normal life” too. Instead of being grateful that she IS my life because without her my life would never be “normal” again.

I’m sorry that as we get closer to the end of treatment I start “planning” again. Setting goals for work and worrying about how I’ll manage Emily and working FT again. Instead of appreciating that I get to juggle work and Em, that daycare isn’t part of that plan, and that she is finally old enough to go with me for almost everything. Reminding myself that school is just around the corner and I need to appreciate this short precious time when she is with me before friends, sports, and homework takeover.

I’m sorry there is a part of me that dreads packing my suitcase this week to have to live back at the hospital. Instead of being grateful that Bio Therapy is available to Emily. Because it only became available nationally just over a year ago and increases her cure rate 15-20%.

I kiss her peach fuzz head. Her hair is growing back dark. The click click of her pump echoes in the dark. I’m grateful that at 5’10” I’m still small enough to fit in her toddler bed with her. I savor this moment just holding her. I can’t imagine my life without her. Without her constant barricade of questions, “mommies!” fits, demands and giggles.

I lay there in a mental war. Fear is attacking every corner of my mind. The 4 kids who have recently died. Their names, their faces, their parents faces, flash in my mind. Cancel. Cancel. I fight back. The colors of life death sign flashes past me. Cancel, I say. A picture of my life without Em fights to gain foothold in my mind. Cancel. Cancel. I refuse to let fear win. After Bio Therapy statistically 6.5 – 7 out of 10 children will never relapse. They will go onto to live their lives cancer free. Since you can’t have ½ a kid I round up to 7. 7 out of 10. Then there are kids who never make it to Bio Therapy. I remind myself of Emily’s Bone Marrow Conference. Her Doctor, standing at the board going over her next level of therapy and saying “if she makes it to Bio Therapy…..” I remember screaming at him in my head “YES she will make it! There is no IF.” And she has. She IS one of those kids. If 7 out of 10 make it why not her? I picture 7 healthy cancer free kids in my mind. I picture Emily as one of the 7. My mantra this year has been “Why not? Why not her?” If someone has to be the statistical 7 why not Emily? She is, after all, my Miracle Kid.

The next morning Emily wakes up asks me when she goes back to the hospital.

“Tomorrow.” I tell her. “We have to plan your party!” I say trying to make it fun. You can see the look of sadness come over her face. She knows what going to the hospital for a week will mean.

“It will be great Em. We can see Nanette, Melissa, Jocelyn, Anna all your favs.” She agrees. Life seems strange without these women, these nurses, who have become our family this year.

“And Emily,” I say (I hold up 5 fingers) “When you are done with this week you have just 4 more to do. Then you’re done with cancer!”

She peers at me and smiles, “Then I can have a normal life?” She asks. “Well, still checkups, but that’s it.”

“Yup, just checkups.” I respond.

“Mommy, will you hold my hand when I have to get the finger poke?” (She knows that checkups mean her broviac implant comes out and then her blood draws will be “finger pokes.”)

“Yes Em, I’ll hold your hand.”

“Ok Mom.” And she snuggles back in.

She reminds me that even after treatment cancer will always be part of her life.

We will never be “cancer free.”

Those regular checks ups will be constant reminders of her strength, her will, her victory…..

….and my gratefulness.

IS THAT GRIEF I FEEL?

WRITTEN 7-1-10

Today Emily was discharged from BMT. (Bone Marrow Transplant) It was a day of mixed emotions. Fear…leaving the “safety” and “sterility” of the hospital. The safety to 4 hour vitals, twice a day doctor checks and huge PRECAUTION signs outside her door warning everyone to gown up, mask up and keep germs away from her.  In the “real world” no one wears a mask or a gown or really comprehends that their small cold which is more of a nuisance to them can be fatal to her.

And yet it was a day of Freedom.  With 4^th of July almost here we celebrated a different kind of “Freedom” party today! With Red, White and Blue pony tails, hats, lies, and necklaces. We sang “I’m Free, I’m Free,I’m bustin’ out of BMT! woo woo woo. I’m Free, I’m Free, that’s right I’m Emily! woo woo woo woo.” Celebrating her crossing a major milestone in her cancer treatment.

We checked into Brent’s place. An apartment like setting just down the street from the hospital. We will be staying here for awhile. We are the 1^st family they have taken that lives less than 60 miles away. Usually Brent’s place is reserved for out of town families. Our”situation” though has landed us here.  Emily will stay at one place and Rob and I will go back and forth. She will be “sheltered” from the outside world, at least temporarily.  At our conference with her PA he advised us to keep her in a “bubble,” She can’t leave the apartment without her thick blue air filtering mask on. That means she can’t eat in public. No picnics and no restaurants. For a mom who’s favorite past time is eating out this was hard to stomach.  “But she loves picnics” I said. If she is away from crowds and people can she at least lower her mask and take a bite? I try to negotiate knowing that one the “goals” Emily has been working so hard for is to leave BMT and go on picnics again.  The PA looks at me. The 1^st 100 days are the most critical in her recovery. I’ve heard the stories of kids who breeze thru BMT only to come back with a yeast or fungal infection. They are deadly. Emily is almost to day 30.

 “It’s 70 days or the rest of her life. I’d err on the side of caution. No picnics.” He says.

Point taken.

Em sits on the couch not talking. She’s mad. This isn’t “home.” This is a strange apartment. Sterile and unfamiliar. She wants to go home. She’s worked so hard to get through her BMT. And this is her reward?  I know how she feels. I’m unpacking our bags. Trying to put things away. This isn’t home. This stinks. I want to be home. In my bed. My kitchen. My Stuff.  If I feel this way at 33 could I really expect my barely 4 year old to feel differently.

I bribe her with a “tour” of the place. The game room, the video room, the family area, the playground. She tugs on me. She wants to go outside and play.  It’s warm. The sun is setting and it couldn’t’ be a more picturesque time to be outside. I left my phone upstairs.  Can I make it through 30 minutes of playing outside without my electric leash? The same kid who hasn’t walked further then her hospital bed to the bathroom without crying is now hobbling around the playground. We are the only ones outside. She sits on a green tractor while I push her around. She checks out the super cool child size hand crafted wooden play house, but then decides it has bugs inside and she’s outa there. She doesn’t talk. Her mask covers most of her face. She points for me to pick up the basket ball hoop.  She shoots two times and makes both baskets. I’m impressed. Do I have a budding basketball superstar? I would have said she’d be tall enough (I’m 5’10 her dad’s 6’3) but who knows after radiation she might be short…5’7! She systematically makes her way thru each section of the playground.

As I watch her I am suddenly overcome with sadness.  How many moms take their kids every day to the playground? I know those kids don’t appreciate it the way Emily does. Something so “normal” so “mundane” to other kids is HUGE to her. To be outside playing on a playground, hobbling walk and all, is such an exceptional experience for her. I am strangely overcome with this feeling I can’t describe. And suddenly it hits me…. grief. The realization of how much childhood she has lost because of her cancer. This will be our 8^th month of cancer treatment. In some ways it feels like 3. To say 8 months sounds so long. Then again, my life BC (before cancer) seems so hard to remember. She has about another 8 months to go. She’ll be almost 5 when she’s done. 3 ½ – 5 …time that will just be gone. 

I’m grateful for her age.  That hopefully she won’t remember too much. That she isn’t missing her friends, school, her activities.  And yet, her pre-school years are so vastly different then other children. She isn’t going to the park, the zoo, or nursery school. She isn’t getting to sleep in or just play in her home all day. She doesn’t go to birthday parties or even get to have a birthday party with other kids. She can’t get dirty or play in the pool.  She knows words like Broviac, Heparin, and TPN. She draws back her own blood & pukes in the tub.  I hate cancer. It’s stolen her childhood. It’s stolen my precious time with my precious child. I want her to be “normal.” To have to console her because she fell and scrapped her knee at the park, not because I just held her down while she screamed “mommy make them stop” as a Dr shoved a nose tube down her.  I want to cuddle with her and watch a movie and have popcorn and it not be in a hospital bed. I want to take her to the children’s museum, casa Bonita, and Pirates cove.  I want our days to be ones that don’t involved doctor visits, daily temperature checks, and a 2 hour bed time routine of line care, feed tubing, fluid pump, mouth care, & medication.  I want to take her to get her pictures done, and to the beach, and get her a kitten.  I want to argue with her about staying up past her bedtime not refusing to take the plate of syringes she needs to swallow every morning.

Today is the 1^st day I feel like I’ve lost something. Something precious and something I will never recover. I feel so guilty. What I have lost is nothing to what Emily has had to go through. I watched her today lying on the radiation table. Her screaming, as she got her 4^th nose tube in 2 months (she keeps puking them up) She say No! Wait until my med kicks in, Mommy make them wait” then she cries, then I cr, then she screams, and then I close my eyes and pray while I hold her down. 

 And yet watching her on the playground is what makes then me sad.  I remind myself Emily will be stronger than any kid I know. That she will have an advantage in life simply because she has had to overcome so much at an early age. That God has plans bigger than I can fathom for her and that her strength and will to fight will serve her the rest of her days. That mastering the “sharing circle” in nursery school is nothing compared to kickin’ cancer’s butt.

She’s standing in front of the big white steering wheel on the playground. She looks at me. Her eyes get wide. She puts her hand to left ear. She shakes her head and then her butt.   
“What Em?” I ask “What do you hear?”

 I can’t see her face under her mask but the gleam in her gray/green eyes gives it away. 

“You hear someone screaming?” I ask. “Someone screaming NO! NO! NO! ?  Someone who is mad you are on the playground?  Is that someone Stupid Tumor?”

She nods happily and shakes her head in a Na Na Na Na Boo Boo” way, nodding in the direction of “Stupid Tumor.”

It’s in that moment I’m reminded of one of my favorite quote,s “The Human Spirit is stronger than anything that can happen to it.”

I  think Emily and me….

we’ll be ok.

ONE GOOD THING ABOUT HAVING THE RUG PULLED OUT FROM UNDER YA….EVERYONE KNOWS YOU’RE SITTING ON THE FLOOR

I am a happy person. Truly I am.

 I wonder why this is? If you look at my life some could argue I have very little to be happy about.  I lost my marriage and found out the man I spent 8 years with was a pathological liar and was finally arrested for assaulting me.  During the year that followed I learned that everything (and I mean everything!) he ever told me was a lie (jobs, friends, drug use, alcohol use, right down to the college he claimed he went to that’s printed in my wedding announcement…he made it up).  Then after I got divorced he didn’t pay the taxes, the debt, sign off on the title of our (now my) house (well it was always my house…I bought it and I was the only one on the mortgage but that’s for a different rant)  Anyway the list goes on.  I was struggling half way across the country from my family,  trying to pay bills, deal with the marital debt he left me with, take care of a house that needed more work then I have time for, and handle a 3 year old who was being physically and emotionally abused and was in therapy.  I was trying to piece my life back together and 9 months later my now 3 ½ year old was diagnosed with advanced cancer.  Since then I have moved into Children’s Hospital. Watched my business continue to slide downward, been subjected to severe control and power abuse with her father, watched my bank account dwindle, worry about how to pay bills , not have time (or the mental reserve) to get my act together and get back to work. And spend 100% of my energy cheering this kid through chemo, surgery, and now a bone marrow transplant. 

I would say it could be argued I just “put on a happy face.”

And yet that’s not true. It is a happy face. I am happy.

I am happy 7 months later Emily is still fighting cancer! She is HERE to fight her cancer. She has made it thru 6 rounds of chemo, 2 chest tubes, lung surgery, an 8 hour tumor removal surgery, and a bone marrow transplant.  She is 4 days into her 14 day radiation. I am happy she is a fighter and no one has told us to go home stop fighting.

I am happy I have a family who hates my ex more than I do. Ok seriously now. I am happy because I have a family that is willing to stand by me, help me out financially, and encourage me to keep fighting for my daughter’s safety.

I am happy that for 12 years I have been in a pink bubble called Mary Kay. Where I have learned to set goals, control my attitude, smile at everyone I meet, and be supported by the most incredible integrity Faith filled women on this planet.

I am happy that this is a season in my life. That it’s not forever. And that both Emily and I will be stronger people on the other side.

I am happy because now I have perspective. I went out the other night with a couple and the guy stormed off mad.  Who knows what they were arguing about.  They’ve been on and off for as long as I remember.  I am happy that I no longer need drama in my life. That my perspective has been changed forever. That it’s ok to disagree, even argue, it’s not ok to bring drama into your relationships. That I see the need for drama as a form of manipulation and insecurity. That I can pick and choose who I want in my life and I have the confidence to say “no thanks” when it comes to drama.

I am happy because my kid is fantastic.  She sticks my hand in her warm bath water and then when I’m pretending not to look she puts it under the cold water running from the faucet. And then when I pretend to be shocked and horrified she squeals in laughter – a laugh that makes me laugh.

I am happy because when I got to sleep at night in the pull out hospital bed next to Emily and I say “Emmie I love you” she says “Mommy I love you”

I am happy because in her bath yesterday she told me “Mommy I love you a million gazillion, bazillion, migillion, cadillion, pazillion” I told her I loved her that much plus 100. She said “I love you that much plus 1000”

I am happy because even though I’m no longer Top 10 in Colorado in Mary Kay. (right now I don’t think they even have a spot for where I am!)  I still have the skills and experience to rebuild where I was. My “stat reports” may have changed but I have not changed.

I am happy because Debbie Segal believes with more conviction then anyone I know that Emily will be ok. And Every time I am scared all I need to do is talk to her for 5 minutes and I’m ok

I am happy because no matter how bad things are I can always go dancing with Jaime and all will be right (or at least avoided for the moment)

I am happy because even with everything with my ex I would go back and do it all again just to have my daughter – even if she does have to fight thru her cancer

I am happy because 7 months ago Emily would cry on the door when I would leave. I was working like a crazy person trying to get my life back together. I was stressed and tired and just depressed.  I would tell my therapist I felt so unconnected. I would sit with Emily and she would just want to play and I wouldn’t know how to just be present with her and play. I felt numb.  My mind 1000 miles away filled with fear and worry and then guilt for not being able to just play. I would hold a toy in my hand and just look at it. And because of her cancer I now know how to play again.  Cancer gave me a chance to just be with her. To play with her. To laugh and be silly.  It gave me my relationship back with my daughter

I am happy because I am not alone. I value the people in my life more than the things in my life. Everything I have lost is material. Everything I have gained is priceless. I don’t get frustrated sitting in traffic anymore. I don’t feel like I need to defend or explain myself to people. I don’t care about the small things and I finally “get” the title of the book Don’t Sweat the Small Stuff…and it’s all Small stuff.  I see the world differently. I value the “temporariness,” that in a blink life will pass me by. I used to live in the future.  I will be happy “when”…when I’m married…when I am a sales director…when I have a baby…when I get a pink caddy.  Without even realizing it in the last 8 months that has changed. I am no longer happy when. I am happy now. Cancer forces me to not think “when” because I don’t know what the future holds.  Ironic that this is my life now. I am a planner. Emily was 2 and told me she wanted to rip the color coded calendar I had made us off the fridge. It broke my heart. Now I can’t plan more than a week at a time because you just don’t know where you’ll be. Will we be in the Hospital or home? With an infection? Without?  In recovery? In crisis? There is no planning with cancer. I am happy I don’t have to plan.

I am happy because it’s sunny. I live in a hepa filtered room. I am happy every time I walk outside and take deep breath and am grateful for the sun and the air and the breeze.

I am happy for sushi, and bagels from Jordyn, and tequila. I am happy that I grew up in NJ and I will forever have a better appreciation for good food then the natives who live here in Colorado (or the Midwesterners who migrated here…the worst! Basically should just lump them with the English)

I am happy when I get to put on stiletto sandals – even when I get strange looks from the Doctors. It reminds me I have a life outside of these four walls and eventually Em and I will be back in it

I am happy for Video chat and that Emily can see my sister who loves her more than anything and Emily loves her back just as much.

I am happy for music. I believe God created music because he wants us to sing.  I sing in the car. Alone, or with people. And when Em is in the car we sing together. Music makes my soul happy.

I am happy I don’t have to live up to expectations anymore. One good thing about having the rug pulled out from under ya….everyone knows you’re sitting on the floor.  I don’t have to pretend I have it all together. That it’s better than it is. I can just be happy and ok with the crisis that is around me

I am happy that I am no longer married. No matter how bad things are now I am free. I am not being manipulated, controlled, or brainwashed by someone who needs a psyche ward instead of a spot in my bed. I am happy I only have 1 child to take care of now, not 2

I am happy that I will never date someone who I would have to get up if my kitchen was on fire.

I am happy I listened to that annoying little voice in my head that said “call Paul” last fall. I argued with it for weeks. Talk about eating humble pie. But I did. And he’s great. And I’m happy he’s part of my life.

I am happy Erin Rose, Cory Johnson, Jamie Roberts, Savannah Murdock, & Devon Kerns are people I get to have in my energy field

I am happy that 6 years ago after being in CO 2 weeks I saw an ad to audition for the Bovine Metropolis Theater and met Denise, and Eric and they just make Denver a better place to live.  

I am happy because I have the most amazing Mary Kay director sisters ~ Deb S, Meara B, Shari S, Yvette A, Pam L, Vanessa M, Sentra H Susan M, Elizabeth M, Sally Ann Q, Suzy K, Lise C, Maryann C, Alexa T, Ronnie K, Kathy P, Tracy G, Judi R, Kelly J, Piper P, Kathy P, Wilma D, and all the others I’m forgetting to add

I am happy Chris Gallegos cracks me up and makes me feel like a million bucks

I am happy Jordyn has the best bed, best Stromboli, best bagels, best hug, and best heart and I am lucky enough to have him in my life

I am happy because Bethany, Jon and Becky and Alyssa are 4 people who have hearts bigger than Santa

I am happy because Brad is my man angel

I wonder why I’m happy. Is it a genetic pre-disposition? Is it 12 years of MK attitude training that it’s an actual choice? Is it the whole Zen Buddhist minimalistic theory…you take away the material and you realize what you really have? What makes someone happy and someone sad? When my marriage was falling apart (oh that, and my ex was threatening to kill me) I was diagnosed with situational anxiety and depression. I kept thinking “what’s wrong with me???” *note to self..there is nothing wrong with you, you were married to a crazy person, you have a perfect child, it was still worth it*  I find it strange that at that point in my life – when I had a healthy child, choices (I mean I could have filed for divorce) and still had a solid business…I was depressed. Now I have a child with cancer, less choices (Per-CO law I’m stuck here till Em is 18 or my ex dies, whichever comes sooner), and have lost much of what I built in my business. Yet now, I’m happy. Really in my soul happy. Different then stressed. I’m still stressed beyond belief. Stressed about the pile of bills on my desk. Stressed that my judicial review will not be accepted and my alcoholic ex husband will still be allowed to administer medication s to our cancer baby.  Stressed that my mother is coming back from NJ, moving back into my house, and has no plans to actually leave. Stressed that my car program is “up” in Mary Kay and for the first time in 10 years I have to “work” to earn a car. Stressed that I don’t have anyone to facilitate exchanges when Emily is discharged and her dad is going to hang our parenting plan over my head. Yet before stressed = unhappiness to me. Stressed made me depressed. Now stress, yes, it’s part of my life. And yes, it’s there and yes, I’m happy anyway. 

My happiness isn’t linked to the stress or lack thereof in my life. My happiness isn’t linked to an event or an achievement or an amount in my bank account.  My happiness isn’t linked to a relationship, a holiday, an accolade, or a vacation. My happiness if found in the mundane. In giving my 4 year old a bath. In pushing her on a swing. In that moment right before I fall asleep and think she’s made it another day. (and grateful I have too.)  In that moment when the Dr is telling me how much her orthotics are going to cost every year out of pocket and I’m grateful that I’m already calculating what that will be by the time she is 18.  In BBQ’s, snuggling, Ice cream, giggling, dancing in the elevator and then in the clinic waiting room to Beyonce’s “Single Ladies.” Even grocery shopping. These are the moments that make me happy.

So now,

I’m happy.

Should I say “Thanks Cancer?”

Well Ok even I’m not that Happy.

PERSPECTIVE

Perspective.

It’s a funny thing.

We all have it.

We all have it differently.

I’m walking into the hospital today. Pulling a wagon filled with my “stuff” for the next few days here. As I was driving here it was 80 degrees. A beautiful, sunny, perfect Colorado day.  I was feeling resentful of having to go back to “live” at the hospital. Now I’m not an outdoors person and yet I was strangely wishing I could escape for a day in the mountains to just hike around (those of you who know me read “hike” and now need to be resuscitated).  Yet I pictured driving (ok well someone else driving) up into the mountains, leaving Denver, and all the stresses of my life behind. If even just for an afternoon.  I realize I’m jealous that others are on “VACATION” mode. Boating, going to Water World (my fav place in co) BBQing, and just enjoying the beautiful state we live in.

My mind however, is not on vacation; instead it’s heavy with worry. I had just left the bank after cashing in some bonds to put money into my checking account. Driving here, I was the on the phone with my mortgage company trying to work out a modification on my loan.  I then had to call my health insurance company to see if they received my check (I had sent it 3 weeks ago and assumed it had cleared by now. However, I’m working on being “proactive” in my life vs. “reactive” so I’m feeling good about myself for calling to confirm they have it – rather than work in crisis next week if they didn’t get it and my policy was canceled.) I find out they just got it (3 weeks late?!?!) and it’s posting today. Crap. I thought that money was already out of my account. Crap Crap I hope that check doesn’t bounce.  I’m thinking of all of this, worrying about finishing my month end, already planning how I’m going to book my Wednesday night class which I “need,” avoiding calling to reschedule my Dr’s appointment that I missed this AM, and feeling that pressure on my chest that feels like someone is stepping on it (an all too familiar feeling these past 2 years) and then I walk into the Children’s Hospital.  A feeling of anger for having to leave the beautiful weather and enter back into the life of the hepa filter vacuums stirs. I walk down the hall. I glance to my left.

Perspective.

A little girl no more than 2 is standing on a couch peering into the fish tank.  Her mom stands with her. I wonder for a minute why she is here. Fish tanks are the standard parent practice of “my kid has cabin fever and I need something to amuse them with.” How long had she been here? All of a sudden I’m sad for her. This child who should be outside enjoying this beautiful weather is here. In the same Hepa Filter vacuum I’m complaining about.  She should be in a park, at a picnic, or at least home with her toys and yet here she is.

 As I sit here and type I’m watching a mom pulling a baby dressed in a hospital gown laying in a wagon kicking his little fists in the air. A teenager in a bathrobe just walked by on the way to the cafeteria. I wonder if she missed her prom. Her graduation. Why is she here?  Kids come by with their poles attached to lines and lines.  In wheelchairs, some with limbs, some without. A teenage girl walks down the hall with her parents on either side. On leg is gone completely and she has a prosthetic all the way up her thigh. The other leg is there down to her knee and the prosthetic is attached to her knee joint. Even with her metal legs her walking is awkward and jerky.  (and I worried if my hair didn’t come out “just right” when I was 16)  Kids walk by with masks on their face. A reminder that the world itself, their home, can kill them.  A mom sits just a few chairs down from me. Her 1 year old is running around with her hospital bracelet on her wrist. She sits on her computer. I wonder if she’s researching. Looking for answers, treatments, cures.  You can always tell the new families on the Oncology floor. They’re the ones on the computers devouring every site they can find on cancer. Looking for answers. Looking for miracles. Looking for someone who will say “I can stop your kid from dying.”

A feeling washes over me. Is it a feeling of peace? A feeling of calmness? Or perhaps it’s a feeling of perspective?

Perspective that I appreciate that I’ll be heading upstairs to hang on the 7^th floor with the person I love most in the world. I appreciate that I have right now, this moment, today, with her, and she is doing well.

Perceptive that all my worries are fleeting. Nothing last forever. And money is just money. You can always make more. Perspective that what money can’t buy, love, is flowing in abundance in my life. Perspective that I have it pretty good.

As I’m sitting here I watch Brandon, Emily’s BMT (Bone Marrow Transplant) PA (Physicians Assistant), walk down the hall.  He is a childhood Cancer survivor.  He had leukemia as a child and received a Bone Marrow Transplant during the course of his treatment. Worse them Emily because he needed a donor (Em could use her own stem cells drastically reducing a lot of the complications these children go through.)  He talks from 1^st hand experience.  How the Vitamin D Supplement that Emily spits out really is disgusting.  How mucasitis – the sores that run from the inside of your mouth down thru you to your bottom- feels like burring.   That you hair grows back and yup it’s different.   He’s one of the people I hold onto tightly because they represent victory to me. A reminder that cancer can be stage in your life, but doesn’t need to BE your life. A reminder of the saying “this too shall pass.” 

What I love about Brandon is that you’d never know he had cancer.   And yet, he has an air about him. I noticed it from the moment I met him.  He’s young. Too young to have “air.” I’ve never been able to put my finger on just what it is. He walks with a certain “laid backness”. He talks with a certain self assertiveness unexpected in someone his age.  Very matter of fact. A certain energy that says “this is who I am, this is what it’s about, and that’s that.”  I try to imagine anything in the world shaking him. Rattling him. Or even angering him.  I can’t. Even his walk seems to say scream “I take it all in stride!”  It’s hard to decipher. It’s not a cocky confidence, it’s not an arrogance. it’s something else……

Maybe….

it’s perspective.

YOU & YOUR FRICKIN’ HEADACHE

I got a text from a guy I really like…

“Another Frickin headache today 😦 How are you?”

I didn’t respond. I couldn’t think of one non-confrontational thing to say.  He had a migraine the night before. I get that. I get migraines. Horrible. I have to lie in a dark room. My stomach is riveted with nausea. Noises feel like hammers on my head. Headaches hurt.

And yet this text is from someone who knows me. Knows I’m spending my night on the 7th floor Oncology Department at Children’s Hospital.  Your headache needs a “frickin?”

I wanted to text back….

“You don’t have cancer stop complaining”

“I’ll trade you for cancer”

“There’s a young boy next door who can’t go home because they are draining fluid out of his brain with an exterior shunt and he keeps getting fungus infections…I bet he has a headache too”

“The baby on the other side of us with Down Syndrome and Leukemia has been up all night..I bet her mom has a headache”

“Probably not the best person to text this to for sympathy..you know cancer and all…”

What I really wanted to say is WHY? WHY? WHY? would you fill my day with your negativity?  How do I balance being sympathetic (headaches stink) with my complete new zero tolerance for complaining. 

(Want to read more? Read the full post by clicking on MAKING CANCER FUN)