Wednesday, July 20, 2011

Leaping Into Thin Air

A Leap Into Thin Air

Our insurance is not wanting to cover the Seattle treatment plan, even though the tests confirm the size and extent of the tumor (!), that it has extended into the soft tissue, and that no one could do the work in Seattle for a number of weeks--critical, critical weeks. The surgeon here wants to get rolling asap because the tumor is close to the growth plate in her leg and the sooner they remove the tumor, the better chance her leg can be saved. Lauren's chest CT also shows spots on her lungs, but they aren't really concerned about those now.

Lauren and I left Hawaii on a red-eye Monday night, despite the lack of insurance thing. The stakes are too high at this point.

Lauren landed in Bellingham, WA, yesterday morning at 6am. My sister-in-law picked us up and drove us to her house in Seattle. It is SO cold, but the extended family went shopping at Goodwill before we got here and we now have some appropriate "summer is like winter" clothes. It's about 58'. Ugh! We crashed for a few hours after we got to Seattle and then had the initial work up at Seattle Childrens Hospital. Lauren is having the biopsy right now to confirm whether it is a ewing sarcoma or an osteo sarcoma. Keep her in your thoughts. She's in surgery now.

The surgeon doing the biopsy is one of the top pediatric specialists in the US for this type of cancer. Honolulu couldn't even do the biopsy for another 3 weeks, much less begin any type of treatment.

Todd and I are weary and emotionally spent, insurance is more than a headache, but most the family is here and/or close. Todd and my mom are at home in Hilo packing us for a year or so. Good thing: Todd may have found a way around the insurance issue. Keep your fingers crossed for us. L will be in the hospital for the bone biopsy today and must stay overnight (possibly 2) to watch for infection, which is common for this type of procedure. Please put extra special thoughts out there for Lauren for the next 72 hours. As tired and spent as I feel (and in pain from the cold with my lupus), I believe it must be 10-fold for Lauren.

Any love, prayers, and words of encouragement we can get right now are a blessing.

Our contact address in Seattle:
Lauren Selden
c/o Kris and Patti Selden
1121 82nd St.
Seattle WA 98103

Sunday, July 17, 2011

The Day I Quit My Life


Today, Sunday, July 17th, 2011, at 8:24 in the morning, I began to quit my life via email.  It had started in my mind the night before.  I posted this to FaceBook at 3:05am:

[Piper Selden] has strength of the soul (or so she hopes).

I'd already sent out the "danger, danger" post about the tumor, so a good number of folks knew what what up.  Folks responded with happy thoughts, well wishes, and a few that said, in essence, have faith and you'll be fine.

I dragged my carcass off the futon a few hours later and got busy with my plans for the day.  Quit everything except my immediate family.  I send an email to my Weight Watchers family.  Strange that I began there.  This was, of course, after I had called my immediate family.  This was after our trip to Oahu, our stay-over with Jill, our medical appointments at Kapiolani Women's and Children's Hospital.  But let me back up a bit.

On July 13th, Lauren and I watched Jaws together.  We were sitting on the couch and she had her legs pulled up to her chest.  I sat next to her and glanced over at her.  I noticed a lump on her left leg, just above her knee.  "What's that?" I asked her.  She didn't know.  It didn't feel right. We made plans to camp out at Dr. Wilson's the next day to check it out.  In the morning, Lauren and I went to feed some cats for a neighbor who's father had passed away on Maui.  We arrived to mayhem, dozens of cats and kittens eating dog food.  It was awful, to say the least.  We spent the day channeling St. Francis and doing good deeds for animals in need.  While I took some of the strays to a friend of mine at a no-kill shelter, Todd took Lauren to the pediatrician.  He ordered an x-ray and said he'd call when he had results.

When Dr. Wilson called, it wasn't good.  A tumor.  But we could wait until Monday to fly to Oahu, he said.  We called my mom first.  Then we called my dad, a doctor in Santa Barbara.  Todd scanned in the x-rays and emailed them.  A buddy of his told us to high-tail it to Oahu immediately.  Not the greatest of news.  We had scans on Friday, July 15th.  The pediatric oncologist gave us the news and I wanted to strangle him within the first two minutes.  He was dismissive, abrupt, and clinical.  Nio warm and fuzzy "Here's your introduction to cancer" talk.  In fact, he must have said the word 'cancer' 40+ times in the 10 minutes he talked to us.  The next bit is a blur to me.  It felt otherworldly, a sight and sound buzzing like the world was moving around me at supersonic speed and I was stuck in molasses.  We got the treatment options.  We looked at the ranking of the Oahu hospital. We looked at others and made the "radical decisions" the medical team warned us not to make.  Todd checked into a flight to Seattle. Lauren and I would fly out on Monday; he would return to Big Island and do what he needed to do to "pack up" our lives for a year or so.  It was really happening.

And so I asked what Lauren needed to make the journey.  Willow, her childhood stuffed rabbit; Skittles, her dog; and me.  Todd was busy on the phone setting things up, talking to relatives.  I sat at the kitchen with my friend Jill and talked about what I needed to do to quit my life.  I wrote a list of all the people I needed to contact.  I mean, how do you quit everything?  I started with Weight Watchers.  I had just days before promised my friend Sandra that I would take over one of her meetings for a few months.  And here I was, going to miss the first meeting.  I sent this email to my WW family:

Aloha Shawndra, Sandra, Michele, et al.  

I will be unable to continue with the Friday meeting in Hilo.  My daughter Lauren was just diagnosed with an aggressive form of bone cancer.  They're talking to us right now about survival rates, metastases, chemotherapy, multiple surgeries, a pain management program, and something that stops me cold: "limb recovery and salvage options." Needless to say, our family is in shock and there is a very good chance that we will be moving to the mainland for treatment, starting as early as this coming week.  Right now everything is up in the air.  We flew to Kapiolani Medical Center Friday morning for a bunch of tests, but Lauren needs one specific test before treatment can begin and there are only a few places in the US that can do it. 

That said, Lauren is such a scrapper and has a passion for life.  I need to be there for her 100% and am dropping everything to support her, including school, my business, our home in Hawaii, and my PhD studies.  We will most likely be in either Los Angeles or Seattle for as long as it takes to complete her treatment--most likely a year or more.  We're not sure about anything right now aside from this: we will be somewhere other than Hawaii by mid-week this coming week for Lauren's big test.   

I'm sorry to have to send this email.  I will miss WW, as well as my friends and support system there.

Piper   

Next, I sent an email to my graduate director and the chair of the English Department at UH Manoa.  I didn't know if or how I would be able to continue with my studies.  To save time, I did a cut/paste and changed pertinent info.  Who doesn't cut corners when life is falling apart around them?

Aloha Professors Carroll, Canham, Lyons, and Sammons,

My daughter Lauren was just diagnosed with an aggressive form of bone cancer.  They're talking to us right now about survival rates, metastases, chemotherapy, multiple surgeries, a pain management program, and something that stops me cold: "limb recovery and salvage options." Needless to say, our family is in shock and there is a very good chance that we will be moving to the mainland for treatment, starting as early as this coming week.  Right now everything is up in the air.  We flew to Kapiolani Medical Center Friday morning for a bunch of tests, but Lauren needs one specific test before treatment can begin and there are only a few places in the US that can do it. 

That said, my daughter is a feisty little thing and I need to be there for her 100%.  I am dropping everything to support her, including our life here in Hawaii.  We will most likely be moving to Los Angeles or Seattle for as long as it takes to complete Lauren's treatment--at least a year.  We're not sure about anything right now aside from this: we will be somewhere other than Hawaii by mid-week this coming week for my daughter's big test.   

This leaves me in a strange place with UH.  I need to cancel my plans for teaching at UH Manoa and UH Hilo.  As for my studies, I have my reading lists for 2 of my 3 areas and will read as I'm able.  I do not want to abandon my plans for a PhD, but I'm not quite sure of anything at the moment.  As odd as this may sound, I would like to formalize the reading list for my Life Writing area so that I can have some type of "plan," even if it's filed away for a later date.  It would give me some measure of comfort to have a goal or motivation for life after we have cleared this monumental hurdle.  All of us are trying very hard to be positive.  Please let me know what I need to do.  I will not be able to teach, so I'll need to pay for my fall tuition.  I'm not sure what else I need to do.  Professor Sammons, will you communicate with the professors on my areas? 

I'm sorry to have to send this email.  I can't believe the number of medical emergencies our family has dealt with in the past two years.  I just can't.    

Best,

Piper 

And next, I sent the email that made my stomach turn over.  I had just sealed the sweetest deal with UH Hilo to teach classes in the fall.  I was so excited, seeing this as my golden opportunity to get a foot in the door at the university of which I hoped to one day teach.  I had the classes down, books ordered (along with the single class at UH Manoa), airline tickets booked with schedules meshing for my perfect life.  Everything was right with the world it seemed.  It was 9:33am on what was to be my last Sunday in Hawaii for who knew how long.  I poured a glass of wine, did a copy/paste, changed more info, and hit the [SEND] button.

Aloha Professors Miller, Panek, and Luangphinith,

My daughter Lauren was just diagnosed with an aggressive form of bone cancer.  They're talking to us right now about survival rates, metastases, chemotherapy, multiple surgeries, a pain management program, and something that stops me cold: "limb recovery and salvage options." Needless to say, our family is in shock and there is a very good chance that we will be moving to the mainland for treatment, beginning this coming week.  Right now everything is up in the air.  We flew to Kapiolani Medical Center Friday morning for a bunch of tests, but Lauren needs one specific test before treatment can begin and there are only a few places in the US that can do it. 

That said, my daughter is a feisty little thing and I need to be there for her 100%.  I am dropping everything to support her, including our life here in Hawaii.  We will be moving to either Los Angeles or Seattle for as long as it takes to complete Lauren's treatment--at least a year.  We're not sure about anything right now aside from this: we will be somewhere other than Hawaii by mid-week this coming week for my daughter's big test.   

This leaves me in a regrettable situation with UH Hilo.  I need to cancel my plans for teaching in the fall, something I've dreamed about doing for years now.  I do not want to abandon my plans for a PhD, but I'm not quite sure of anything at the moment.  What I want to express to you all is how sad I feel about losing this wonderful opportunity to teach at UH Hilo.  I hope that I will be given another opportunity to do so when my family has cleared this monumental hurdle.  Right now we are trying very hard to be positive.   

I'm sorry to have to send this email.  I know that it puts the administration in a scramble to cover my three classes.  Please let me know what, if anything, I can do.    

Best,

Piper

I broke down and cried after I sent that last email.  I cried again.  And again.  I'd come up for air, then sink again.  My face was a puffy, hot mess--the ugly cry.  And then I poured another glass of wine. Right then, I said a little prayer, asking for the Lord to watch over my daughter, my husband and son, and my liver.

Thursday, July 14, 2011

In the Beginning, the WORD Was On FaceBook


Strange, perhaps, but in the interest of having a single and complete log of our journey, I have decided to compile journal entries and emails from the very beginning.  Here's Day 1, a FaceBook post:

"Please keep us in your thoughts. We just found out that our daughter Lauren has a bone tumor on her left leg. We fly to Kapiolani Children's Hospital tomorrow. Universe? No more emergencies, please."

I remember that the kids and I had on our skate gear.  We were getting ready to Malama Park.  It was late in the afternoon, early evening in Hilo.  The sun was still up, but the heat had dissapated.  Perfect skating weather.  Then the phone rang and I saw Todd talking to someone.  After only a minute, he looked at me--through me, really--with a stunned look on his face.  He can't hear and he's trying to concentrate, I thought.

That was just two days after Lauren's birthday.  Our house was full of kids on roller skates, barking dogs, and summer craziness.  "What? ... What?"  Todd says into the phone, one of many competing noises in the house.  Then he motions to me, we move into our bedroom, and he gives me news that will change my life forever.

Lauren had been complaining of knee pain for some time, but she had started roller derby and the kids had been practicing falls to the knees.  All the girls were complaining of knee pain.  And then there was the growth spurt.  I wasn't thinking cancer.  I wasn't thinking tumor.  I was thinking growing, healthy child.  How was I to know what was to come.

Strange that I wrote that because this was my first post of the day.  Strange and eerie bit of foreshadowing:

"‎- wading through shark-infested waters today. So: "Here's to swimming with bowlegged women." --Sam Quint, Jaws"

Wednesday, July 13, 2011

Dragonslayer Diaries



Once upon a time a woman and her daughter met a real live fire-breathing dragon.  That dragon's name was cancer and that woman was me.  This is our story.       




Just days after her 11th birthday, doctors diagnosed my youngest child with Ewing’s sarcoma, a rare and aggressive form of bone cancer.  I became a warrior mother overnight—a Dragonslayer.  And we readied ourselves for battle.  Reader beware: Here there be dragons.