Reaching Bittersweet Maintenance

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Hello Friends,

It always feels difficult to get started on these entries, but once the words begin to come, they do seem to pour out.  Today, I’ll start where I finished last; the lemon-aid stand.  I think we’re all still feeling the joy from that day.  We got up early, wiped the sleepy dust from our eyes and started cleaning, peeling and juicing to make the lemon-lime-strawberry concoction. We couldn’t just have regular ol’ lemonade … it had to be PINK!  We made gallons of it, and it was tasty!  As Jimmy documented every move on video, we somehow opened promptly at 10 o’clock.  It was hot but bearable outside, eased by the cloud-cover overhead.  Customers were ready at the wait, and came in droves throughout the day.

We had special guest appearances by little Kate, who looked positively beautiful, and Toussaint from the ‘Seeing in Believing’ May blog entry!  Neighbors, friends, church members and blog readers came and populated our front and back yards with kids in tow (who generously brought money from their piggy banks).  Our local news even came out to do a story on us, which I’ll try to post soon.  They did a lovely job, and played it at both the 5pm and 10pm news with Lulu lead-ins during the Olympic trials.  We felt our community holding us up once again, and wished we’d had more time to talk to every person who came.  I actually lost my voice by the end of the day!  I’m thrilled to report that with your help, our little 3 1/2-hour lemonade stand raised $1,725.14 for childhood cancer research!  We are planning another one July 15th at our church and, by summer’s end, hope that we can really make a difference in either the H.O.T. unit or the Blood Research Institute.  We’re speaking to people now to find out where the money can best be utilized, and not be lost in the red tape of donationland.

We spent the 4th of July at the hospital, because, ya know we like to spend every holiday there ;-).  We happened to be right next to Bo’s room, and I felt terribly that he had to hear Lu screaming through her shots while he was already having a hard time.  He’s in a torturous pain from mucositis, but got his double-cord transplant successfully after multiple rounds of total body radiation.  Please keep the good juju coming for him that all goes well.

We talked about getting to Maintenance Therapy with the docs, and what it will entail for Lulu.  It’s not as easy breezy as I had hoped, and the conversation left me a bit deflated.  She will start off with a spinal tap with intrathecal chemo, and a lot more chemotherapy to follow.  She will get one chemo drug at home EVERY SINGLE DAY for 20 MONTHS along with others received regularly and intermittently.  She will also get steroids 5 days every month (hear inner scream) and more spinal taps.  Wow.  The good news is that we won’t have to go into the hospital nearly as much as of recent.  If all goes well, she will only go in once/month!  Now that’s huge!  Her beautiful blonde hair will start growing back, and she can go back to school in the fall.  Halle-freakin’-Lulu-ya!!! We have the end date penned into our calendars: March 6, 2014.

On the home front, Lu is still a little spitfire, but showing flashes here and there of her old sweet self.  I’ve sworn to move out when she is between the ages of 12-16, and return after.  I’ll still call, and skype.  – Maybe even have a weekend visit and holidays … just kidding (mostly)!  I really do adore her and she is my little Tinkerbell.  They make ‘em cute for a reason, right?  Jimmy is, well, Jimmy is … hmm, too many words to fit in here.  He’s been working harder than I’ve ever seen him work in my life.  I must track down his swim coaches and thank them, because I truly believe his training in college has prepared him for this both mentally and physically.  You see, Jimmy was a world-ranked distance swimmer, in the 800 and the mile.  Can you even imagine swimming a mile!?!  I’d be happy to jog a mile these days!  I think you’d have to be incredibly tough on all fronts to do this, and do it for years.  So, coach Bob and Jack, thank you.  Sports really do shape a person.

Oh, and I must include his biggest news:  He had a personal dream come true last week!  His favorite band in the entire world is the Foo Fighters, and he got to film them at a live concert!!!  He was just adorably giddy about it, really unlike him who plays it very cool most of the time.  I loved seeing that side of him and he wholly deserved it.  At one point while he was shooting, Dave Grohl almost knocked him over when he came flying up to his camera.  I think Jimmy told me about it at least 5 times.   – Love it!

I’ve been continuing to work part-time on my consulting job, and loving every minute of it.  Thanks Grandpa, for holding down the fort while I’m working at the coffee shop, which the family now knows as my c’office.  I feel like I’m overflowing with pent-up work energy, like a runner crouched in the starting position on the track before the gun is fired.  I’ve needed this outlet, and am so grateful to have it.  It adds balance to me, to Lulu and to the whole family dynamic.  Max has been taking a theater camp, and he too, seems to be bubbling over with enthusiasm.  He’s actually super talkative at the end of the day!  I get to ask him all kinds of questions and actually get a response, well, except when I ask him about girls.  That’s still off limits.  I guess he’s not interested yet (yay!).  On the contrary, Lulu already talks about her little friend Franklin saying things like “Mama, sometimes I fink I wuuuuv him!” followed by a cheeky giggle.

Well, dear Friends, we are getting there.  Wherever ‘there’ is.  Getting to Maintenance, getting to the new normal and whatever that will mean.  I’m hoping the forecast is light on rain, and heavy on rainbows.

Love,

a.l.l. of us

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Unexpected Kudos

Hello Friends,

As I was responding to the comments readers had made on my blog this week, I was delighted and surprised to find this:

“It’s an odd little community of bloggers–those of us on-line writing our mind and heart. And then to stumble upon you and the Grace and courage conveyed … remarkable. I read your blog, because it breaks open my heart each time I do and it reminds me what truly matters in life. As Billy Joel once sang “I have been a fool for lesser things.” I nominated you for the Very Inspiring Blogger Award.  I want you to know that you and Lulu have a wide touch…beyond family and friends…into the internet ethers, inspiring and blessing people like me who bear witness to this sacred dance you do with your daughter. You and Lulu are in my heart and I am grateful to follow your story and to bear witness to its awful tenderness.”  

Stephanie Raffelock  http://callingoftheheart.wordpress.com/

  

Wow.  What a wonderful surprise.  I’d like to thank Stephanie for nominating me for the Very Inspiring Blogger Award.  I didn’t know if my blog would really reach people beyond the cancer story … I just hoped that it would.  The award is truly lovely, but the words from Stephanie are the real trophy to me.  Her writing is soothing yet inspiring, and reminiscent of my mother’s ideology.  I’m so grateful that she found me, and that I found her writing.  I hope you will visit her site often:  www.callingoftheheart.com

To receive this award, I must list 7 interesting things about me, and tell you about some bloggers that inspire me, so here ya go!:

7 Things:

1.  I used to be an opera singer.

2.  I (very) occasionally snort when I laugh.

3.  Between singing jobs, I once did a national tour where I played a dancing Sesame Street-type character.  The costumes were 40lbs, and difficult to see out of.  At one of the shows, I fell off the stage onto the unsuspecting first row of children.  No one was hurt in this horrifying incident :-).

4.  I grew up painfully shy, and although you wouldn’t guess it if you meet me, I still struggle with it.  Now it just comes out as intermittent moments of social awkwardness. Nice, huh?

5.  Mad Men and Smash are my drugs of choice.  I’m totally addicted.  I even dressed up as Joan for Halloween.   I stuffed a padded size F bra into a tight red dress.  Men still stopped me to ask if they were real.    Oy.

6.  I rowed crew for a summer 3 years ago.  I was in the best shape of my life and always long to get back to it.  I loved the peacefulness of being on the water and the camaraderie of the women.  Of course, there was that time this duck took a paddle to the head … He came out of nowhere, I swear!

7.  Having a daughter with cancer has almost wholly cured me of the disease to please.  I find it easier to speak my mind, write, and say no.

Although the rules suggest I nominate 7 bloggers, these days I don’t truthfully keep up with 7.  With that in mind, here are my 4 nominations:

Fancy Feet:  www.heidicave.com

A tragedy turned triumph led this woman to share her message of hope, love and courage with us.  She is currently publishing her first book, based on her blog.

An Inch of Gray: www.aninchofgray.blogspot.com

Thoughtful and self-depracating, Anna See takes us on a visceral ride through her life.

Chase your bliss: www.toussaintmorrison.blogspot.com

If you read my entry “Seeing is Believing”, you will know why I am nominating Toussaint.  His young, raw talent is blossoming into a strong voice that will have an impact on this world.

Glamaross:  www.glamaross.wordpress.com

Sharie Ross found me by chance over the worldwide webs.  I just like her.  She combines glamour with reality and humanity.  She reminds me of the fashion industry I recently worked in, and that motherhood and glamour are not independent of each other.  She is also a cancer survivor, and therefore, in the club.

Thank you to these, and other bloggers whom I have yet to discover.  I’m simply a newborn to this world, but feel excited, connected and supported by it already.  As the award states, you are all “keeping the blogosphere a beautiful place”.

Gratefully,

T. Marie

Seeing is believing

I have two crazy stories to tell you this week.  Crazy good, with crazy-amazing moments …  The first story came out of the blue:  I have to take Lulu into Children’s for bloodwork weekly, and put numbing cream on the insides of both of her arms, to give them a better shot at finding her teeny tiny veins. It’s always traumatic, no matter how much cream and self-talk I teach her.  As we sat in the waiting room last week we were, as usual, surrounded by other children with their parents.  You can tell immediately which are which; the sick from the healthy. Sometimes it’s obvious in the children themselves, but you can always tell by their parents.  Some just cry outwardly, others simply glaze over, lost in their own pain, overwhelm or denial.  The healthy-child parents give these sad, pitiful looks to the rest of us, or avoid eye contact completely.

A robust little girl came over and started speaking really obnoxiously to Lulu.  She kept asking her about her feeding tube, why her hair was gone, poking at her, your basic nightmare.  She wouldn’t give up, and her mom was M.I.A.  She kept trying to touch Lu’s feeding tube, and at one point, she tried to grab it.  Lu was so calm about all of this, but I had a secret desire to take this small child and do more than talk to her!  Down Mama Lion.  Of course, I didn’t act on this fleeting thought, her mom returned and we had a peaceful few moments before going in for the poke.

I started reading a friend’s Caring Bridge, filled with sadness for her, and so much empathy.  I didn’t have time to finish reading it before our names were called, and I brought that energy silently into the lab room.  Lulu started sniffling immediately upon entering, and I sat her in my lap as the nurse came over to do the deed.  The techs there are usually very disconnected,  getting the job done, ignoring all the pain/fear/screaming/hysteria they deal with from these little tykes.  How else could they get through the day?  But our nurse was different, completely present.  As Lulu was obviously terrified, yet trying her very best to be brave, the nurse seemed moved.  She kept saying, “I just feel awful, I just don’t want to do this to her.  I don’t know what it is, but I just don’t want to do this.  I’ve never felt this badly before”.  I could tell she was sincere.  It was as if she could tell how much worse Lulu’s been through, how much worse she has yet to endure, and how this little poke was just one too many insults to her little body.  The blood was drawn, the kleenex came out and as I wiped the rivers of tears and snot from Lu’s face I looked up to see the nurse who also needed a tissue.  We exchanged a look that reached beyond the moment, when you really see someone.  She took Lu by the hands and apologized to her profusely, looking her straight in the eyes.  She apologized over and over again in a heart-wrenchingly touching and surprising way.   As she looked up at me, eyes still brimming with tears, she said she’s been doing this for 24 years and never wants to do it again.  She’s never been so upset, and just doesn’t ever want to poke another child again.  Ever.  I thanked her for not being numb to her job, to us.  I haven’t seen her there since.

The other story came just as unexpectedly.  As you know, Lu and I have been largely sequestered for months, due to low blood counts and susceptibility.  She had been asking me for weeks to go to Alterra, our favorite coffee shop, so she could get hot chocolate.  It seemed like such a wonderfully normal thing to do.  Finally, I just said “let’s do it!”. I actually showered and put a touch of makeup on, threw on some jeans with my favorite jacket and off we went.  She was bubbling with excitement as we stood in line.  The place was packed and I immediately started doubting my decision.  There was no turning back now, though.  We got our goodies and were forced to sit at the, oh no, COMMUNITY table!  Ugh.  Germs everywhere! Ok, let’s just make this snappy and get outta here.

But Lu was actually eating something, her favorite poppyseed bread, a sip of hot chocolate.  Ok, we can stay a couple minutes.  The guy sitting next to her says hello, and Lulu is having a ball playing as I plan an escape-route in my head.  There’s something about this guy next to her, he keeps chiming in on our conversation, wanting to engage somehow.  This is already atypical for us, as we more often encounter the opposite reaction from strangers.  He looks like the usual eastsider:  young, plaid shirt and jeans, but there’s something more there …  Lu must have sensed it too, and after chewing on the broken-off piece of bread for a while, she turns around to the young man and says “do you want some?”  She reaches out, offering this obviously goobed-on-by-sick-girl crumb and the guy takes it, thanking her, and EATS IT!!!  He gave us a beautiful gift in this small but mighty gesture.  My eyes connected with his and there was a strong energetic moment of what I’ll again call “seeing” past our physical selves.  We exchanged first names, and although I wished we could talk more, I have to get Lulu out of there.

The encounter really stuck with me.  I couldn’t shake it.  I just had this strong intuition about it.  I decided on a whim to google him.  His first name was Toussaint and I knew where he was from, how hard could it be?  It proved to be incredibly easy, as if fate had stepped in once again.  I found him within a few minutes.  He had a band, and a blog.  I stopped there.  I knew he would write about us, about Lulu.  I don’t know how, but I just knew.   I started checking the blog every few days until … There it was.  The entry was called “Coffee and Chemo”. Here is the link to the full story: http://www.toussaintmorrison.blogspot.com/2012/04/coffee-chemo.html . You’ll chuckle at his misinterpretation of me (“Jesse”), but I can understand it from his point of view.  He was, however, spot on in his impression of Lulu.  I ended up emailing him, explaining my preoccupation, thanking him, and introducing my family to him and letting him know that Lulu was doing well.  It turns out that his mother works in oncology and had been battling some health issues of her own.  He was very generous in his email, and I think we will forge some kind of friendship from this.  He also writes beautifully, and I’d like to invite you to follow his blog: http://toussaintmorrison.blogspot.com/

I still can’t get over it.  How powerful a moment can be, a small gesture, a little empathy.  How connected we all are, how powerful it is to really SEE someone, and be seen.  Isn’t that what all of us really want and need in this life?

Please reply to this and share your thoughts, or a time when you’ve felt seen.

T. Marie and a.l.l of us