the hyphens that define my life

Support Me Support Them August 25, 2013

Booming loud thunder.  Lightening flashing in the night sky.  House lights flickering.  Rain pouring down. The air cools and smells fresh and clean. I am in a melancholy mood.

Earlier tonight I spoke with my younger sister who filled me in on the details of her trip to Seattle last week while I was in Orange County, CA on a work trip.  My younger sister lives in Flagstaff, AZ and spent last week in Seattle as she volunteered to have her bone marrow harvested in a few weeks to help our ailing older sister who suffers from rare, complicated diseases, from which she has no hope of recovering. 

Our older sister, at the young age of 47, has been offered a glimmer of hope to renewed health through a bone marrow transplant that is scheduled to occur on September 18 with the University of Washington and the Seattle Cancer Center.  She has been sick, in a sickly sense, for a very long time, more than 15 years at my best recollection.  Though I am the worst to ask what is wrong with her because of the complexity of her illness, I do know that she has an immune deficiency that inhibits her ability to fight disease.  In addition, of the 5 IGG levels we all have (did you know that?), my sister lacks A, E & M. She also has a diseased liver, not liver disease, a diseased liver, that is causing all types of issues. At one point, I learned there were only 6 similar cases on the planet. Her prognosis is bleak.  As is, on the medication she is forced to take in order to maintain her current state, she will develop non-hodgkins lymphoma very soon.  A bone marrow transplant is her only hope.

Last spring, we three siblings, my younger brother and sister and I, were screened as viable candidates for bone marrow transplant.  Siblings, I learned through the process, are the best possible source for match.  Who knew.  I was immediately ruled out within 5 minutes of the initial phone call due to my previous cancer history.  My brother was tested but was not a match.  My younger sister turns out to be a perfect match for which we are all thrilled.

Last week, health screenings and additional tests were completed to further ensure that my sisters are an identical match. 

In three weeks, my younger sister will return to Seattle to undergo harvesting of her bone marrow and my older sister will receive the bone marrow via transfusion later that same day. I will be in Seattle at that time, for three days, to help and keep my mom calm and aid in the care of both of my sisters as they recover.  I will stay with my older sister primarily as her body’s reaction to the foreign bone marrow is of biggest concern.  Her body’s reaction to rejection could simply be nausea or it could kill her.

Yikes.  Heavy stuff.

I need you for support.  Please keep my sisters in your prayers and in your thoughts through the next month.  Though the critical time won’t begin until September 18,  emotions, stress and anxiety are already running high.

Thank you.


T-18 Perspective June 1, 2013

Filed under: Life,Quotes — multihyphenatedme @ 7:54 am
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Do you know where you were and what you were doing 6 years ago today?  I do.

My husband was working in Los Angeles. Our two older kids were at school in Kindergarten and 7th grade. The younger two ages 3 and 2 were left with a babysitter as I drove 20 miles from Parks into Flagstaff AZ to to work with a fast wifi connection before runnng errands.  My favorite stop was Late for the Train coffee shop on Milton Road for their many tables, fast wifi and good coffee.  My car was on fumes when I rolled into the parking lot.  I added “get gas” to my list of errands to run later.

After an hour of so, I received a call from the school superintendent to tell me, the school board president, that there was a fatal accident involving three sisters (two of our students and an 18-year-old) of a local Parks family travelling to California around midnight the previous night.  The two small classes (10-15 students in each) involved, 5th and 7th grade, were extremely upset and crisis counselors had been contacted. Inside the coffee shop, I yelled into the phone for information and details.  As I grabbed my computer and stuff, my phone rang again.  This time it was someone (I can’t remember who) explaining that my daughter, as well as the rest of the 7th grade class, was hysterically upset over the tragic loss of their friend and I needed to get on campus as soon as possible.  I explained I was in town and would arrive in 20 minutes.

Everyone in the coffee shop, strangers and those who knew me as a regular alike, stared silently as they witnessed my distress and sensed the urgency to get out of there as quickly as possible.

I ran to my car.  Leaving the parking lot I realized (DAMN) no gas.  I banged on the steering wheel screaming expletives.  I quickly drove to the nearest gas station.  In my haste and stress and delirium, I couldn’t remember what side the gas tank was on, even though I had owned the car many years. I drove around and around the pumps, unable to get the car positioned with the tank next to the pump.  Frustrated and crazed I got out of the car and stretched the pump until it reached around my car to pump gas. Shaking, I only pumped what I needed to get me to the school.

Eighteen miles. Blindly driving.  Crying.  Screaming.  Disbelieving.

Six years later, my friend grieves the loss of her babies. Each year, this is the hardest week of her life, May 31 the hardest day and summer is tough with each girl’s birthday one right after the other in June, July and August.

Yet it was this week that this friend beautifully posted: “someone somewhere is struggling more than you can imagine. be grateful for what you have, how very insufficient it may seem at times. be thankful for those around you. make sure your kids know, WITHOUT A DOUBT that they are loved. that is the greatest legacy we leave our children”.

That’s perspective.

Alohna, Bryanna, Charless, you are remembered,  you are loved.