Shelter From The Storm

“The wise man in the storm prays to God, not for safety from danger, but deliverance from fear” ~Ralph Waldo Emerson

“If patience is worth anything, it must endure to the end of time. And a living faith will last in the midst of the blackest storm.” ~Mohandas Gandhi

The storm clouds gather on the outer reaches of my mind, a dark sky full of foreboding. I hear the distant rumble of thunder, a warning of danger slowly approaching. The wind begins to whisper, "Run away, run away, before the cold rain comes." I am frozen in fear, unwilling to move forward and unable to go back. There is nowhere to hide and so I will stand and let the rain wash away my tears.

I am sad tonight. I am often sad, too much thinking, too much reading, too much waiting, too much remembering. Has it only been two months? It feels like so much longer than that.

The waiting continues. We are waiting to hear that the donor has passed all the necessary physicals, testing, and questioning. We are waiting for the donor to agree to donate. We are waiting for a time-line to be set in motion. We are waiting to meet with the BMT team, sign consents, and start pre-transplant testing & harvesting of donor marrow. We are waiting for an admission date and the start of the infamous "preparative regimen" and the countdown to Day Zero.

While we wait, Nick has gotten stronger and is feeling better. His appetite has improved and he has been eating as much as possible with a goal of gaining as much weight as he can. Nick has been off to the ocean and out to dinner, reading books, and hanging out with Kate and friends. He is back to driving himself about the countryside and he gave himself a "haircut" today. Nick plans to hit the beach again this week to visit with family. The Chapa's will be in from Chicago and of coarse, we have to go all the way to Ocean City to visit with Uncle Dan & Aunt Cathy, who live only twenty minutes away.

We will skirt the edges of this storm for as long as we can. When we can no longer run, we will seek shelter in the love of family and friends.

Helplessly Hoping

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

~ Emily Dickinson

Bluebird of Happiness

~ You cannot prevent the birds of sadness from passing over your head, but you can prevent their making a nest in your hair ~ Chinese Proverbs

Ironically, I once played the part of the "Bluebird of Happiness." I don't remember any of my lines and my career in theater was short-lived.

There is a nest of baby birds in my old dryer vent. I think they are cute. I hear them chirping through the vent pipe in the ceiling of my unfinished kitchen. Music to my ears. "A bird does not sing because it has an answer. It sings because it has a song."

Nick was a trooper and came through his bone marrow biopsy with "flying" colors. It was a nasty procedure to have done and nasty to watch. Nick recovered quickly and flew the coop to meet up with some sea gulls in Ocean City. Now we wait for results...waiting is for the birds!

"Birds of a feather, flock together." At the Weinberg Cancer Center, the birds flock together for lots of reasons. Seeking care and treatment. Finding comfort in knowing you are not such a "rare" bird after all. Glances and brief nods amongst strangers, in the silence we speak. "I know what you are going through right now. It is happening to me too!" Clipped wings beat against the door of the cage. Will a caged songbird sing?

Three Little Birds ~Bob Marley

Don't worry about a thing
cause every little thing is gonna be alright
don't worry about a thing
every little thing is gonna be alright

Rise up this morning
smiled with the rising sun
three little birds
pitch by my door step
singing sweet songs
of melodies pure and true
saying, this is my message to you:

Let me know if you see any twigs in my hair, won't you?

And Flowers Pick Themselves

Today I thought I might want to get in a hot air balloon and go on a journey through the sky. I am not scared of heights and it moves slowly up and hopefully slowly down. The slowly down part being key! Seems like it would be peaceful looking down at the world from this new vantage point. Like an eagle soaring...feeling the caress of a gentle, cool breeze and finding solace in the quiet of open spaces.

Nick has been at the beach for the weekend...I am happy that he is doing something fun, but, I miss him. He reports in every now and then. He called to say he misses his family sitting with him on the beach. I told Kate to feed him lots of fattening beach food so he can gain some weight. He is going to have a weigh-in when he returns. Then maybe we will all jump into the balloon and fly away...up, up and away, in my beautiful balloon. (Flashback: Fifth Dimension)

who knows if the moon's

who knows if the moon's
a balloon, coming out of a keen city
in the sky--filled with pretty people?
(and if you and i should

get into it, if they
should take me and take you into their balloon,
why then
we'd go up higher with all the pretty people

than houses and steeples and clouds:
go sailing
away and away sailing into a keen
city which nobody's ever visited, where

always
it's
Spring) and everyone's
in love and flowers pick themselves

~E.E. Cummings

Synchronized Swimming

I know it has been a while since I have posted. Things have been busy. Back to work at the studio trying to get all the ducks in a row. (Ducks don't like being in rows much, so it takes a long time to get them to stay there.) Barbara has been running summer camp, while I try to catch up on Quickbooks and work on modifications to my teaching schedule, so I can be available for Nick's BMT whenever we get the final word. We have not heard anything from anyone. Nick's last visit to the "hop" was uneventful and his counts were good. He got his last LP and has spent the week mostly at home with the standard aches and pains. We got a call today from his nurse at the clinic. He has to go in next Tuesday for his first "bone marrow biopsy." Nick and I were both a lot disappointed that this test has thrown a wrench in his plans (once again). Nick had hoped to go to the beach with Kate for a few days, trying to plan his travel between Friday appointments. I think he is still going to try to go for a few days though.

It worries me when Nick tries to travel to far from home as he is still very weak. He continues to lose weight, despite his best efforts to eat. There is just no way for him to eat enough calories to gain weight. His nurse at the clinic said that it was OK if he didn't eat a lot, as long as he keeps hydrated. His appetite that last few days has been better. But, I told Glenn, he is like a baby bird...I have to keep bringing him something to eat every couple hours or so, or he really doesn't think about eating. Sara gives him a hard time and tells him to get off his butt and get himself some food.

I have been trying to encourage him to get up and stretch, take walks or little trips. We went to C-Mart the other day and afterwards, he was very tired and had a huge headache. The other night he went to see a band and drank a cup of coffee and he couldn't sleep and was up half the night. He hasn't been drinking coffee and he forgot about the effects of the caffeine.

I know it has been hard on him. It is just not normal for a guy his age to be lying around on the couch all day! He reads, watches TV and uses the computer a lot. So I guess I am glad he will be getting away for a little bit. He is talking about driving himself to the beach though and that will be the first time he has really driven anywhere in quite a while. We did have a good time watching the Home Run Derby and the All-Star game the past couple nights. Nick also started to teach me how to play Ma-Jong tonight. It was fun. Nick likes to play chess, but, I cannot play chess with him. Chess gives me a headache.

The bone marrow biopsy is being done to determine if his CML has gone back into what is called a "second chronic phase." It is a good thing if he is back in a chronic phase. He will have to have quite a few of these bone marrow biopsies throughout the course of his treatment, as this is the best way to follow his progress. We have not heard anything more about the donor selection process or any timeline; which makes it very difficult to plan anything and also is stressful to all of us. I guess we are all keeping a good face on things as best we can. Having all this time between sort of lulls you into a false sense of "all is wellness." But, Nick's weakened state, his thinning hair and his pale face, are constant reminders that all is not well. As a parent it is so hard not to be able to fix things. I am doing what I can right now to help him physically and emotionally; treading the fine line between concerned Mom and nagging n'er do well.

It seems that I have no happy medium on my own emotional thermostat...I am either blocking all emotions and stressing over inconsequential bullsh*t or I am crying in any number of inappropriate situations. (Like today at the bank with some poor bank lady who was very nice, but, didn't really need to deal with me and my issues!) I have accepted to some extent that we have purchased a ticket on this nasty ride and therefore, we better fasten our seat belts cause it sure as hell is going to be bumpy! Did I mention that I hate bumpy rides of any kind? I am finding it hard to keep an even keel; although, right now, we are all just treading water and hoping our legs don't give out before someone throws us a life preserver. I guess right now we are a lot like those synchronized swimmers. Above the water all is calm, serene, and under control; but, below the surface, our legs are doing some mighty fierce kicking.

Well, I guess I have rambled on enough for one night...had to make up for lost time. Here it is 0315 in the morning. Goodnight John-boy!

P.S. - Wish that was me sitting on the beach.

A Renaissance of Wonder

Glad to be home. The dancers did a great job and held their own against some tough competition. "Ring Them Bells" will now go into retirement. Nick had what we hope was his last lumbar puncture and intrathecal chemo this past Friday. In the meanwhile...

I Am Waiting
by Lawrence Ferlinghetti

I am waiting for my case to come up

and I am waiting

for a rebirth of wonder

and I am waiting for someone

to really discover America

and wail

and I am waiting

for the discovery

Of a new symbolic western frontier

and I am waiting

for the American Eagle

to really spread its wings

and straighten up and fly right

and I am waiting for the Age of Anxiety

to drop dead

and I am waiting

for the war to be fought

which will make the world safe 

for anarchy

and I am waiting for the final withering away

of all governments

and I am perpetually awaiting

a rebirth of wonder

I am waiting for the second coming

And I am waiting

For a religious revival

To sweep thru the state of Arizona

And I am waiting

For the grapes of wrath to stored

And I am waiting

For them to prove

That God is really American

And I am waiting

To see God on television

Piped into church altars

If they can find

The right channel

To tune it in on

And I am waiting 

for the last supper to be served again

and a strange new appetizer

and I am perpetually awaiting

a rebirth of wonder

I am waiting for my number to be called

and I am waiting

for the Salvation Army to take over

and I am waiting

for the meek to be blessed

and inherit the earth

without taxes

and I am waiting

for forests and animals

to reclaim the earth as theirs

and I am waiting

for a way to be devised

to destroy all nationalisms

without killing anybody

and I am waiting 

for linnets and planets to fall like rain

and I am waiting for lovers and weepers

to lie down together again

in a new rebirth of wonder

I am waiting for the great divide to be crossed

and I anxiously waiting

For the secret of eternal life to be discovered

By an obscure practitioner

and I am waiting

for the storms of life

to be over

and I am waiting to set sail for happiness

and I am waiting

for a reconstructed Mayflower

to reach America

with its picture story and TV rights

sold in advance to the natives

and I am waiting

for the lost music to sound again

in the Lost Continent

in a new rebirth of wonder

I am waiting for the day

that maketh all things clear

and I am waiting for retribution

for what America did to Tom Sawyer

and I am waiting

for the American Boy

to take off Beauty's clothes

and get on top of her

and I am waiting

for Alice in Wonderland

to retransmit to me

her total dream of innocence

and I am waiting

for Childe Roland to come

to the final darkest tower

and I am waiting for Aphrodite 

to grow live arms

at a final disarmament conference

in a new rebirth of wonder

I am waiting

to get some intimations

of immortality

by recollecting my early childhood

and I am waiting

for the green mornings to come again

for some strains of unpremeditated art

to shake my typewriter

and I am waiting to write

the great indelible poem

and I am waiting

for the last long rapture

and I am perpetually waiting

for the fleeting lovers on the Grecian Urn

to catch each other at last

and embrace

and I am awaiting

perpetually and forever

a renaissance of wonder

Things Are Not The Same

For those of you who may not know, I am currently in Florida. Despite my need to control all things in my life, I decided to go to Orlando with Barbara and the Gems dancers for the Nationals. I was urged to go by Nick and Glenn and Sarah and Kate and anyone else who thought it might "be good for me." Now I am here with no computer access, so this may be the only post I put up while I am away. I miss my family and I miss Nick so much. As one of my dancers said tonight (she is here without her Mom), "I am so homesick!" I call every day (and night) to check on Nick and make sure that Glenn is holding down the fort. He tells me I must stay at camp and I cannot come home. It is so tempting to jump in a cab and head to the airport and see just how fast they can get me back where I belong. Is this how the soldiers feel when they are deployed for 15 months....trapped, cut-off, and so sad? I know Nick is in capable hands with his Dad, his sister, and his girlfriend, Kate, but, as the "Mom" I just want to be there with him. Even though my logical brain tells me he is fine, my sentimental brain tells me I need a hug from my boy! Anyway, my cell phone alarm just went off to let me know that I need to get off the computer now or I will have to pull a bank robbery just to pay for the minutes I have been on here already. The week cannot end soon enough for me. While I love being here with all of my dancer family, things are not the same as they were and they will never be. I wish my heart was not so sad right now. I try to find joy in the simple things that surround me but, I am better at giving that advice than taking it. Peace to all who continue to pray for Nick. Please call him or come visit. I think he needs some company and well wishes! God(s) bless to all and to all a goodnight.

Haiku II

"With dewdrops dripping,
I wish somehow I could wash
this perishing world."

~Matsuo Basho

Big Wheel Keeps On Turnin'

I am not a ride person....too much of a control freak. Being pregnant with Nick & Sara were the only rides I agreed to get on. Yes, I equate pregnancy with a roller coaster, once you get on you can't get off until the ride is finished. Only on that ride, you get a baby in your arms at the end. So, yeah, I generally hate rides; but, I am a fan of the big wheel. I love being up so high and seeing everything down below and going real slow! And I like the lights too! Makes me happy. Oh and I like to make the gondola tip forward and backward too; which, all my roller coaster ridin' crazies don't seem to enjoy and I don't get that at all. You like dropping from insanely dizzying heights at 1000mph, but you will have a major freak-out if a gondola tips back and forth ever so slightly? That don't make no sense!

Today, we got some good news. While we were down at John's Hopkins, henceforth to be known as "the hop," we got to speak with one of the big wig doctors. He was very nice and the first thing that he shared with us was that the first person that has tested is a full match for Nick's BMT!!!! This is great news and I think we were all in a little bit of shock as Nick, Kate, and I all sort of just stood there and laid there and went....(gulp) OK! They will still be testing some of the other candidates and if there are other matches they will pick the best one. The other variable is that the donor can refuse to donate if they are unavailable or they have changed their mind or whatever. So that is all yet to be decided.

The process is in full motion, so it may be as soon as early August that Nick will begin his pre-testing and his preparative regimen. We were told we will have at least a month's notice, as there are so many aspects of the BMT that have to be coordinated on many levels. Once the bone marrow is harvested, it must be transfused within 72 hours. Usually, a date for the actual BMT (infusion of the donor marrow into Nick) will be set. That becomes Day Zero - Nick's new birthday (hey...I was just thinking that his real due date was August 20th, now wouldn't that be ironic. He was three weeks overdue, that his how he ended up being born on Sept. 11th).

They then count backwards from Day Zero...so all his prep happens on Day -14...day -13....day -12 etc. and you count down until Day 0 is reached. I hope this is making sense to everyone. It is great news, but, let's not get to excited just yet. The doctors make the BMT sound like a walk in the park and everything I read makes it sound like anything but, so I hope the truth is somewhere in between.

I think Nick is taking things in stride and he is asking good questions and staying positive. He still wants to go to the beach, but, he has one more LP to go, next Friday. We are hoping that he will feel much better by the end of the following week. The spinal headaches and the nausea from the chemo are keeping him from being as active and eating like he wants to...his appetite is Ok and all things considered he is doing pretty well.

And now for my pubic service announcements:
Please take a moment to remember all of the soldiers deployed around the world in service to our country, particularly those in Iraq and Afghanistan. They need to know we are with them and support them each and every day! If you really support the troops try to find a concrete way to show that you do!

Also, if you want to do something to help in general...consider giving blood! Supply is low and demand is always high at this time of year. Lately, when we go to clinic, they are always short of platlets and those needing transfusions have to wait until they can find platlets for them.

"You cannot do a kindness too soon, for you never know how soon it will be too late."
~Ralph Waldo Emerson

My Heart Seems To Wait

Here is a song I heard recently that I really liked. It is by an artist name Leeland Mooring. The song is titled, "Brighter Days." The name of the album is Opposite Way. I'd put it on my playlist, but, it is not available yet. You can find it on itunes. We are off to John's Hopkins this morning. So I best get some shut eye.

Time keeps moving on
Through the sunshine and the storm
And my dreams are set in stone
And someday I’ll be who I want to be
For now I’ll wait
For the sun to shine again
And for now I’ll wait
For the rain to pass away

And I’m looking for the brighter days
When all my hurts seem to fade away
I’m looking for the brighter days to come my way

Faces come and faces go
But none seem to look my way
And walls have stood and walls have fallen
But my heart seems to wait
For now I’ll sit at the end of the road
And for now I’ll wait
At the end of the pathway

I’ll see the sun one day shine upon me
I’ll see the sun one day
And watch the nighttime turn to morning
But for now it all comes back around

Blog On - Part Two

Now you see it, now you don't! City Girl's (Lt. G's fiance) blog content is gone now too! Her first post was there as of 0200 1-July-08. Now it is just a blank page with the title "Kaboom." Big Brother hit the delete button....again.

Blog On

Just wanted everyone to know that Lt. G's blog is GONE!!! He was ordered by his chain-of-command to DELETE it! His fiance was able to get his domain name so if you go to his blog, you will now find her updates on what is going on with Lt. G and his men.

This news comes on the heels of a NEWSWEEK article from the June 30th issue that talks about the therapeutic value of blogging (like I didn't know that already). To quote from the article, written by Jessica Bennett, "Writing is an effort of the brain to communicate for comfort," says
Harvard neurologist Alice Flaherty. "Diaries are a form of that communication, but, removed. Blogging gets you closer to that sympathetic audience, and that's what makes it therapeutic."

So by all means US ARMY....let's take away the opportunity for our soldiers to get this sh*t off their chests and get some support from a bunch of people in cyberspace who actually do care about what happens to them!!!

Yes, I am stirring up trouble. Don't mess with my soldiers! Don't they have enough on their plate with fighting wars, and PTSD, and losing limbs and increased suicide rates and losing their friends and their marriages because they have been stop-lossed or extended so many times that they haven't been home long enough to change their underwear before they are sent back!

Soldiers on their second, third and even fourth deployments have been in Iraq or Afghanistan for so long that they don't know what it is to exist outside of a war zone. So God forbid we should let them write down a thought or two about what is actually requiring them to be on the job there for the last five years.

It is late and I can rant no more. Medicinal bloggers....BLOG ON!