Click on picture to read Chaco's poems

Thursday, November 11, 2010

Travel On

Time to travel on draws near,
Already missing those so dear,
Her calling voice sometimes unclear;
If you think I forgot you don't fear,
You are always in my heart right here,
Soon together on the road up there,
Family to hold you forever my dear!


Thursday, November 4, 2010

Finding Grace

Lose the me - go inside
Find the self - do not hide
Maverick orb spinning round
Leaving space finding ground
Touch the earth - reaching out
Letting go - come back about
Feel the peace - find the edge
Pull together - drive no wedge
Unworn paths - where they lead
Some are known - some unseen
New found world - ancient place
Searching souls - finding grace


Tuesday, November 2, 2010


I pass the homeless on the street
And look and wonder why
 I walk to dine in your fine home
Then eat but want to cry
I am you see between the two
And pray that when I die
I'm not alone and on some street
With others passing by
So next  time as I walk on pass
And see them in their sty
Unlike before I'll stop and ask
If I can help or try
Each one's a Mom or Dad or Son
Or worse....a Daughter...sigh!
We're just a paycheck or so
From meeting eye to eye

Sunday, October 31, 2010

Sisters Four

I have four sisters I surely like
Each one different, each alike
First came me then sisters two
Add a brother then two more too
Each a beauty and if keeping score
Next more beautiful than the one before
Each unique in their own way
Not one best on a given day
One is funny, one is smart
One is serious, one is not
One is loving, one is kind
One is trying to make up her mind
One is bold, one is meek
One hugs my arm walking down the street
One likes walking, one likes wine
One teaches me yoga from time to time
One likes dogs, one likes cats
One likes horses and cowboy hats
One likes coffee, one likes tea
One likes hiking in the woods with me
They are the best these sisters four
Just not possible to love them more
I'll steal a line which I hope you'll pardon...
" Four different flowers from the same garden"


Tuesday, October 26, 2010

She Was The Music

All I have left of her is this poem
Nothing left but this earth to roam
I have no ties, no love, no home
All I have left of her is this poem

All I have left of her is this rhyme
Nothing left but this marking of time
Wandering to heal this heart of mine
All I have left of her is this rhyme

All I have left of her is this scribe
Nothing left but rough roads to ride
Rough roads without her by my side
All I have left of her is this scribe

A poem is just words without any song
She was the music and I sang along


Thursday, October 21, 2010

Autumn Walk

Acorns crunch beneath my feet
Fall's sheading leaves ankle deep
Swans float by across the pond
Like clouds the angels sit upon
Pause to watch them slowly fall
Leaves of firey colors all
Squirrels scurry here and there
Hiding nuts ahead winter air
Mallards exploding into flight
Protective coves to find by night
Soon these woods cold and bare
Will drift the snow above his lair
Follow tracks up to the den
Beneath the fox sleeps, but then;
He will wake at times and peak
Out to see Spring's promise keep


Wednesday, October 20, 2010


Got a backpack all my own
A laptop and a telephone
On a road to don't know where
In a hurry just to get somewhere
Don't know why it  is I roam
From mountain top to blue sea foam
Someday I might even know
Maybe then I can let it go
Always feeling all alone
Just a dog without a bone
She is gone and won't be back
Her loving arms are all I lack
"Keep keeping on" friends all say
But I know that just won't pay
Tried church and prayer and tears
Tried anger, pain and "I  don't care"
Guess I'll be the vagabond
Drift around till I am found
Maybe one day she will send
To me another love and friend


Thursday, October 14, 2010

A Little Lost Boy

Both a little lost boy and a weary old man
Don't know where I'm going or know who I am
We travelled all over free as the weeds
A couple of gypsies like wind blown seeds
It was more than the time together we spent
It was more than all of the places we went
Like the sun and the moon and the stars up above
You were all of the good I was ever made of
You've gone on a trip and left me behind
I  travel alone now searching to find
My life now feels over and I'm always afraid
Without you alongside me what life can be made
Both a little lost boy and a weary old man
Don't know where I'm going or know who I am


Thursday, September 30, 2010

Life's a Circle

Family ties and my hometown
Like old friends newly found
Roads the same but now fresh ground
Sights anew but familiar sounds
Roots here too but freedom bound
Guess I'll walk again downtown
Wharfs and alleys I must pound
On the trail just like the hound
Something lost and something found
Looking forward yet turned around
Inside out and upside down
Pressing down a thorny crown
The inner smile now a frown
Oh! To be again that clown!
Life's a circle, round and round


Monday, September 20, 2010

Lonely Ranch Road

Scattered my love above a lonely ranch road
Like a promise made and a debt still owed
Released to the winds by two she loved
Free to fly on like the spanish dove
High above that broken heart ranch
High above the tamarack branch
Looking down she will see him ride out
On his favorite mount, the cowboy scout
To check on the fences, the corn and the cows
To check on the water, the field and the plow
If you look in the morning or late in the eve
When the sun is still rising or setting with ease
You will sometimes see them both on that ridge
Between this life and that across a far bridge
One flies to the east on a strong steady wing
One rides to the west where the cowboys still sing

For Sheila and Greg - two truest loves leaving two broken hearts - you both are loved more than ever and will never be forgotten. Please watch over us both!

Thursday, September 16, 2010


When I come to the end of the road
And the sun has set for me
I want no rites in a gloom-filled room.
Why cry for a soul set free?
Miss me a little--but not too long
And not with your head bowed low.
Remember the love that we once shared
Miss me--but let me go.
For this is a journey that we all must take
And each must go alone. It's all a part of the Master's plan
A step on the road to home.
When you are lonely and sick of heart
Go to the friends we know
And bury your sorrows in doing good deeds.
Miss Me - But Let me Go!
--unknown                      aafe+10

Wednesday, September 15, 2010

Feeling like a stray dog....

So many mixed emotions from visiting Mikey and Greg's ranch in Liberal, Kansas I cannot write anything at this time. Extreme happiness, extreme sadness, extreme gratefulness......don't know quite where to begin so I will leave it for a future date and sign off with this Robert  Frost poem and leave it at that.  aafe+10

Where had I heard this wind before
Change like this to a deeper roar?
What would it take my standing there for,
Holding open a restive door,
Looking downhill to a frothy shore?
Summer was past and day was past.
Somber clouds in the west were massed.
Out in the porch's sagging floor
Leaves got up in a coil and hissed,
Blindly struck at my knee and missed.
Something sinister in the tone
Told me my secret must be known:
Word I was in the house alone
Somehow must have gotten abroad,
Word I was in my life alone,
Word I had no one left but God

-Robert Frost

Thursday, September 9, 2010

Off to see the Wizard! <-----click on title to go to OZ

Tomorrow we head out to Liberal, Kansas to visit Mikey and Greg's ranch and farm. This will be a sad reunion. Last Christmas as we all got ready to leave WE CARE HOUSE we all thought we would be back to see each other again. Sheila and I headed off to the Everglades and Mikey abd Greg went home to the ranch after being at WE CARE for almost a year! Little did we know that we would never all meet again. Greg died at home in April. Sheila and I planed to go up and visit them but never made it happen. We both felt terrible about that! Now Sheila is gone and I will go and visit Mikey and see Greg's grave alone. As I was packing things up to take up there I felt overwhelmed with regret, sadness and even anger because Sheila was always right beside me as we packed for a trip. To think of her not there, packing and getting into Farkus for the road trip with me was more than depressing! I put in a CD while I packed and the second song was Neils Young's Harvest Moon! That became our song over the years and I had to go outside and walk around for awhile before I was OK. These weeks without her have not gotten any easier. Mikey and Shane her son and Cody her grandson are harvesting thousands of acres of corn right now and Mikey is helping on the tractor right along with them. I hope that when I get there they have plenty of hard work for me to keep busy at! Mikey and Sheila were very close for the short time we lived together at WE CARE and I am bringing Sheila's little frog candlestick holders that I bought her when we first started going out together. I can think of no one who Sheila would more like to have them, and she would be happy they found a real home. She would not part with them even though we have lived a gypsy lifestyle the last few years! They always reminded me of the whimsical statues of kids playing that we found and she posed with at parks and playgrounds all over the country. All I know is that I have to get away for awhile, stay  busy and figure out what to do with the rest of my life. I am hoping visiting Mikey and helping out on the ranch for a short time will start me in the right direction. I am also bringing her some of her and Greg's belongings left behind at WE CARE last year. After this trip, its a bus ride to New England, a car trip to Michigan and a 2000 mile walk in the spring. If that can't get me back on track, there is no hope.

Sheila dear I miss you more than I have words to say, this is by far our toughest trail with me lagging far behind you! Please give me the strength to see it to the end, and as Bones says in one of his songs, "please grant me safe passage!"  I love you-aafe+10

Wednesday, September 8, 2010

The jungle, the rock quarry and the haunted forest!

Yesterday I met Rhonda and the kids and after we all had McDonald's pancakes we headed out to Home Depot to get some potting soil. peat moss and pots to repot several plants. When we got there the kids noticed the giant kiddy shopping carts with big plastic cars and dual steering wheels behind the big regular shopping basket. Of course we had to take one for a test ride and as Rhonda talked peat moss and azeallas with the lady in the garden section we went off on an anventure. The kids loved it as we "drove" through the jungle ducking all the ferns and hanging baskets and the stone turtles and frogs in the garden center. We then headed for the rock quarry where they keep all the decorative stone and paving blocks before we got the nerve up to head into the haunted forest, the big grove of potted fruit trees and twenty foot shade trees.The kids squealed as the haunted apple trees "threw rotten apples at us" and Jane had to duck a few times to avoid being hit by one! When we escaped from the haunted forest we headed back inside to the "north pole" in the airconditioning and the cart did a few donuts as we hit several "ice patches"! The kids just couldnt get enough "donuts" so they had to pratice their driving skills with several more before we left for the electrical lighting section where all the lit lights on the ceiling became the stars and moon at night! By this time they were hungry and we stopped by the display of outdoor grills and had some barbeque chicken legs "right off the grill"! After "eating" we had to head back into the jungle and the heat to find Mom. She was still talking with the garden lady and we had to load up the peat moss, new pots and potting soil. It was tough leaving the adventures behind but it was now time to go shopping for some new sneakers for Mazie!

Tuesday, September 7, 2010

A Truely Brave Marine...Semper Fi Pete!

   Saturday I went to see Pete, a friend and fellow Marine who I have failed to stay in touch with for at least a decade. A DECADE! Where did the time go? What was so important to neglect this friendship all these years. Marines are not supposed to act like this. Marines ALWAYS take care of their own! On this score I have been a miserable failure. All I can do now is make sure this does not continue. I have to admit if Pete was not battling cancer I may not have taken the time to see him even now. That is a the sad truth. What does that say about me as a friend, a person? I also have to admit that if I hadn't just lost Sheila, the complete and total love of my life, that I also would still be thinking only of myself and not have even made the effort to stay in touch. I must really re-examine what I thought was important in life. All that matters in life is Family and Friends! There is, in the end....nothing else! I can only go forward from here. I will stay in touch and see Pete and Carla more often. I am praying Pete wins this battle with cancer. I know first hand the absolulte fear, uncertainty and sometimes hopelessness of that hell on earth that is cancer! 
    We met at the Warbirds Air Show and it was just wonderful to see Pete and Carla after so long. They were doing volunteer work in the museum and the concession stand during the air show. We talked of old times, Marine times and these terrible cancer times. I filled them in on Sheila and our fantastic years together and of our adventures. I was wishing so much that they could have got to know her! I met their son Marshall who is going into the Air Force soon. He seemed to be a great young man, squared away and very bright. He will do fantastic in the Air Force and I wish him all the best! Carla's sister Teresa also came out to visit and it was just great to see her again after an even  longer period of time lost! Carla and Teresa are sisters to Jody, another Marine that Pete and I served with in the Corps! It was like being with friends who I have seen constantly all these years! I felt at ease with them all from the start and we walked aimlessly among all the old warbirds and talked and reminised. They will never know how much that meant to me, especially now. I have been feeling so lost and directionless without Sheila and though no one will ever fill her place, at least I  know there are still people I can lean on from time to time and help me through this! The kindness of family, friends (old and not so old) and even strangers that I have just met at church have kept me from just falling completely apart. I do not have the words to express the love and graditude I feel toward them all. I used to think I never needed anyone's help but I have found that I am no more than a scared little boy since losing Sheila. I wish I had her strength! I feel she is still showing me the way! I just have remember to listen for her.....and she will be there!  



Friday, September 3, 2010

Just trying to push on....

The night has a thousand eyes, And the day but one;
Yet the light of the bright world dies, With the dying sun.
The mind has a thousand eyes, And the heart but one;
Yet the light of a whole life dies, When love is done.

                               -Francis W. Bourdillon

Today I got up early and did my pushups and headed to McDonald's for some caffine and the internet connection. Some of the regular seniors are starting to greet me when I find a seat. THAT scares me! I have to get away...soon! I made plans yesterday to go up to Kansas and visit Mikey and Greg and see their ranch and maybe, hopefully I can help them out  with some chores or something. I feel the need to do hard phyical work of some kind. Some soreness, blisters and back breaking  work would take my mind off the real pain, at least for awhile! Speaking of pushups, I told Mikey that since the night Sheila passed away I have been doing pushups in Greg's memory every night before going to sleep. He always did his pushups, even when he was hardly able to get around due to the radiation and chemo. I thought if he could do that every night , what the hell is wrong with me? So I have been doing them every night since.  I have also started doing them in the morning when I get up just for myself. I have to keep active if I am going to get through this. I have discovered that you can't feel sorry for yourself while doing push ups! Tomorrow I plan to go to Lancaster, Texas to the Warbird Air Show to see Pete, a Marine Corps buddy I have not seen in years. He is currently going through radiation and chemo for esophageal cancer and he and his wife are volunteering at the airshow. It will be good to see them again even though they are now fighting this terrible thing. I am just trying to stay very busy and not think too much about my own pain of missing Sheila. She will always be with me and I don't want that ever to change. I just have to learn how to live with myself and remember all the, unbelievable times and places we shared! I will love her always for many reasons but mostly for showing me how to live, enjoy life and become a much better person.                                     aafe+10

Wednesday, September 1, 2010

Just marking time......

Today I brought Farkus the F'ing Focus in to find out what all the new noises were coming from under the hood.  I was hoping it was just wheel bearings or something fairly minor. No luck. After hoofing it up to the nearest McDonald's to wait the verdict, they called after two hours and said all they could find was all the motor mounts were shot and the engine was tilting heavily when the gas was applied. They could get it fixed today but it would be at least 960 dollars! As much as I would like to live without a vehicle it is just not possible, at least not while in Dallas. I promised under my breath that Farkus would be given a Viking funeral one day on the side of some loney highway! I told them to fix it. Then I left McD's and started walking south toward Cowboy Stadium. What to do all day, on foot, in almost 100 degree weather while Farkus tried and succeeded to rob me blind? I walked along the road while impatient people in six lanes of traffic honked and cursed each other in a big damn hurry to get to the next light. I sucked in exhaust fumes as I walked through the light while big mouthed bikers with loud exhausts tried to convince themselves more than anyone else that they were the real deal. Their big fat bellies and bingo wing arms flapping in the wind as they rode off said otherwise! It was hot, I was in a foul mood and I was missing Sheila so much it felt like falling into a deep dark well. I walked a few miles then noticed a Half Price Bookstore we used to visit. I was walking in an area of town where we had stayed in between trips and passing all those familiar places just made me miss her more. I went inside to cool off and kill some time. I browsed all the travel, history, nature and literature shelves and imagined she was looking at all the fiction novels that she loved to read. I got bored, angry or both, I still can't tell which and went back out into the heat. Headed south again I wandered right in front of Cowboy Stadium and thought what an immense catherdral to that egomaniac Jerry Jones. To think of all the homes people were forced out of to build that monstrosity, just to see a bunch of ignorant unmoral (for the most part) millionaires play a game there and all the lemmings that flock there to worship them, well I wiil not type in all the explatives here! I was hoping some of Sheila's good nature and tolerance would find me about now. I continued in the heat to Walmart to cool off again and maybe get a cold drink. I walked aimlessly through the store then just left without a drink. My mood was getting worse. "THIS JUST SUCKS! THIS JUST SUCKS!!" Mikeys words for how she still felt four months after losing Greg was ringing in my ears. I agreed with her. THIS JUST F'ING SUCKS!!!  I started back north toward City Garage even though I knew the car was not even close to being ready. It was really hot now and my heavy daypack was stuck to my back like a giant gluestick!  Another mile or so and I dropped into a Taco we used to go to. I ordered two one dollar burritos and a senior cold drink (they are free) and felt a little better at "gaming" the system for a lousy dollar drink. I got out our bottle of Tabasco brand hot sauce that we got at Avery Island on our last road trip when we toured the Tabasco factory. We always had it in our daypack and it helps when you live off the value menus! After eating quicky, not  liking eating alone now, I left and continued north with heavy traffic right alongside me. So here it is 3:35PM and I am back at the McDonald's I started at early this morning and writing this. I am now thinking if this is what it will be like when I hike north in the spring with Sheila's ashes.......I am in deep, deep trouble! THIS SUCKS!

Tuesday, August 31, 2010

Toesocks blazes a new trail for me?

Yesterday was one of the most painful and miserable days I have had since losing Toesocks. I know I am going to miss her forever and that pain will never go away, nor will my love for her. Yesterday though was all about feeling sorry for myself and that cannot continue, she would  never have tolerated it! I woke up this morning determined to sort out some kind of plan to keep me going. Toesocks would have wanted me to keep having adventures, enjoy every minute of life and be a good and honest person. Somehow I am going to do just that. She will always be right beside me in spirit and show me the way, if I only pay attention. Today I brought Farkus in for service that is overdue and because of some strange noises coming from under the hood (I think Farkus is also grieving) they made an appointment for 9AM tomorrow morning. So now Farkus will get straightened out. The next step is to help Dan do some projects around his place. He is repainting the room I am staying in and last night I tried to finish that work up. Next he is having new carpet installed in the room, so I will stay there until they come out and install it. The next thing is to visit Mikey on their ranch in Kansas and bring her some of her and Greg's things that were left behind last Christmas at the WE CARE HOUSE. They went home for Christmas last year as did Josh and Letha, while Sheila and I headed off to the Everglades and Florida. Mikey and Greg never made it  back, he continued to lose ground  and passed away at home four months ago. We all thought we would see each other back at WE CARE after the holidays, we never got to say goodbye! Sheila and I always wanted to visit their ranch and see them again. Sadly that never happened. So I will make it up there and see Mikey and Greg's ranch, his grave there and bring their left behind items to them. Mikey also requested I bring her some little thing of Sheila's that she could have to remember her. They were like sisters and best friends as soon as they met, which to me was no surprise....Sheila was like that with everyone she ever met! Then when I get back from Kansas I plan to hop on a slow bus to New England and visit all my sister's there. Sheila always wanted to take a cross country bus trip and we never got to do that either. She thought we would meet an entirely different type of people on a bus as we did on the trail, the train and other adventures and she wanted to experience it all! I also like the idea of just getting on the bus alone, not having to think about driving and watch the country side and cities just go by the  window. Also it will not get anywhere in a hurry and I can just look out the window and be with my thoughts about Sheila and think. That is something I need to do. After wearing out my welcome with all my sisters I will board another slow bus back to Texas and my brothers place and get ready to ride with Rhonda, John and all the kids to Michigan at Thankgiving. There we will again celebrate her life, Thanksgiving, her birthday and bury most of her ashes there at the family cemetary. We plan to have a marker stone engraved with two hikers helping one another up a mountain and the words that she said whenever anyone asked her how she was doing....."Practically perfect in every way".  Next up will be our thru-hike of the Appalachian Trail. She didn't like that fact that we were reduced to just section hikers after her broken leg in 2008  and leukemia in 2009. I plan to carry the last of her ashes the entire 2175 miles from Springer Mountain, Georgia to Mt. Katahdin, Maine and leave the last of her on the summit! She loved that idea and we talked about it on the night before she died. We will walk together again with spring all the way to Maine in one hike and she WILL be an AT THRU-HIKER!!

Monday, August 30, 2010

First night at brother Dan's

"Like one, that on a lonesome road
 Doth walk in fear and dread,
 And having once turned round walks on,
 And turns no more his head;
 Because he knows, a frightful fiend
 Doth close behind him tread"
  Woke up today at my brother's place in Avarado, Texas. I am so grateful he is giving me a place to land until I figure out what to do. Yesterday we had an unbelievable celebration of Sheila's life at Rhonda's church. Everyone was so friendly and the love they all shared for Sheila was truly overwhelming. The room was filled with table after table of framed pictures of Sheila's amazing life, along with her hiking gear, toesocks, sandals and other mementos of her. I think now the intense pain, and shock of losing her is being replaced by an even more cold hard lifelong fact, and that is how am I going to continue without her. She was my whole world and entire life. She changed me in so many ways for the better that I cannot imagine life withour her. I am totally lost as for direction, purpose and love of life now. The only thing that keeps me going is trying to do what I know she would want me to do. I don't know how long that will carry me. In the end I still have to wrap my head and heart around going through the rest of my life without her. That one thought is too painful to even consider right now. I plan to help on some projects around Dan's house then I think I will take a bus trip alone somewhere. Sheila and I made this blog to..."explore-dream-discover", but now I am afraid it will be ....."wander-work-wonder".  Wander with no direction, Work at finding a purpose, Wonder how to go on without her.  Life without that even possible?

Saturday, August 28, 2010

Today we move to Dan's

We leave the We Care cancer house for the last time! It will be good to leave the area and the nearby cancer center, hospital and funeral home (all just down the street one block) We will move to Dan and Yolonda's and try to figure out what to do and where to go from there. Everything we own in this world is packed up in Farkus and looks like we are just starting out on another adventure. Part of me wishes we were headed to a nice simple place somewhere in Virginia with the Shenandoah Mountains nearby.  In time I know she will show me the way home!

Thursday, August 26, 2010

No words will come but an old poem I have read several times lately...

This is one of my all time favorite poems that I cut out of a book on the history of the Boston Marathon. My mother gave me the book back in the early 90's when I was running marathons and triathalons. It tells of a marathoner who was taken suddenly in the prime of his life and I thought it always captured the true spirit of the marathon and the special people it takes to be dedicated to a pursuit like the great Boston race. In these last few days it has brought tears to my eyes because it is reminds me of Sheila's own champion spirit, how she lived her life and how dear she was to all who met her.     aafe+10

                   Pat Dengis

Ah, little we thought as he hurried past
That the die of fate was already cast
And that he was running his final race
Though the hue of health was upon his face:
As he swept in view with a gallant zeal
And answered the challenger at his heel
It was plain to see by his twisted grin
He was claimed by all though he might not win.

How he liked to run in the wind and rain
With a boundless vim he could not restrain
Though never the laurel of brief renown
Might his brow adorn with a victor's crown
And his heart was seared with a mighty thirst
That could not be stayed till he entered first
But the Fates stepped in and they flogged his pride
Till he lost his pace and he stood denied.

O' the shot shall herald a braver start
But it shall not liven that stiffened heart

For the span of life is a thinning thread
And the conquered and conquerer soon are read:
But to those who dream in the haunts of yore
And to those whose senses are quick to score
He'll come sweeping down like a hurricane
With the gods that were in his swirling train.

                                               --Fred Griffin

Monday, August 23, 2010

Still no words to write but a very comforting letter from an AT friend

       I recieved this letter today, it was the only thing in our mailbox, which made it that much nicer.

Chaco & Toesocks,

    We only met briefly for 2 days over 2 years ago. It was Trail Days in Damascus.
I have no idea why you both stuck in my mind. I met hundreds of people that year.
I've followed your trials and your adventures in your facebook posts and on your blog.
I didn't post comments often, but I loved seeing your pictures and reading about
your travels and adventures.
    Now Toesocks is on the ulitmate adventure. It's the one trip I think we are all
preparing for in one way or another.
   Now I am at a loss for words; for what to say next. I  only hope that I can start that
final trail with her spirit and joy.
                                                         Forever in my memory-
                                                        To Sheila (Toesocks) Black
                                                                                        Connie Cockrell

Friday, August 20, 2010

She Is In a Better Place

She is in a better place
Only happiness on her face
She hikes the wooded trails
With a body no longer frail
She climbs the mountain tops
In bounds and leaps and hops
She paddles the pristene lakes
Cleaving a ribboned wake
She has not a single care
Her body it will not wear
She owns the sun and stars
The moon as it shines afar
I will see her in every tree
And know she smiles at me
I will feel her in every wind
As a kiss upon my skin
When rain comes pounding down
My tears will not be found
I will hold her in the dark
 Pressed firmly against my heart
She remains my guiding light
Ever always in my sight
When my own trail comes to end
She'll be waiting for me then
With open arms we'll meet
Forever more to keep


God bless you Toesocks, how I love and miss you so!   aafe+10

Thursday, August 19, 2010

A Poem, a Picture, a Teddy Bear and a Pin

Today I saw Toesock's for the last time. Her body was at the funeral home before being cremated as she wished. She wanted no service of any kind or public viewing but they gave Rhonda, John and me  private time with her. I had dressed earlier this morning in our AT hiking atttire, complete with our trademark toesocks and sandals and walked to the funeral home to arrive an hour early. She would have loved that I walked there. I wanted to spend the most time with her as possible. I was let into the private room and there was Toesocks looking as beautiful as ever. She looked like she was just sleeping peacefully and had on her hiking clothes as well. I do not have words to describe how I felt as all the emotions of her death, together with the absolute relief of knowing she would no longer be facing any more treatments or sufferings, and all the memories of our great adventures and love went back and forth through my head and heart. She has been my entire world! In her right hand she was clutching four yellow roses at her chest. Her other arm was at her side and the hand looked relaxed with the fingers slightly pointing ahead as if to say, "onward" and reminded me of how she balanced her trekking poles lightly there when not needed walking on a level trail. I knew she was safely in heaven with a healthy body again, stalking high lonesome trails, climbing majestic peaks and paddling her kayak through pristene waters. I placed in her shirt pocket her favorite picture of us, Mikey's tiny pink cancer awareness teddy bear that she carried on her backpack, my sister Carol's alzheimers awarenes pin she also carried on her pack, a poem she wrote to me years ago that I just found agan this morning and a note from me. Saying a final goodbye to my best friend, deepest truest love of my life and whole world was breaking my heart! Toesocks you changed my life and taught me how to really live.  I will never forget any moment we shared nor will my love for you ever fade away!!     "AAFE+10"

Wednesday, August 18, 2010

Toesocks, I love you!

Toesocks, when I wrote this poem you were only away a few days. How am I ever going to get over your leaving me forever?  You were my whole life, truest deepest love, best friend and adventure partner!! This unbearable pain of missing you is just beginning! Toesocks I love you now and I will love you forever!

Missing You

I miss your shoulders
and your soft lips
Your laughing eyes
and your kiss
Your loving arms
around my waist
Our quiet talks
and your face
I miss your touch
upon my skin
I miss your ear
to whisper in
But most of all
I miss my heart
When you left
you took that part
To love you more
I need it back
To fill this void
deep and black
So don't delay
Please return
Remove this hurt
and ease this burn
You are my life
Please hurry back
I love you so
Sheila Black

Monday, August 16, 2010

4PM Update

Dr Plump (thats what is written in the nurses board) came in to see us. He is a pumlinary/cardiac specialist and he is consulting with Dr. Vignale and Dr. DiStephano about gettting Sheila's heart functions back on track. He went through all her history and agrees with the other doctors that Sheila had shown no outward signs of this coming on. He is going to follow her closely with the other doctors to get her heart back on track. She has not vomitted since this morning and is keeping down the sodium polystyrene they gave her to help lower her potasium levels. She is drinking some ginger ale from time to time and sleeping for short little naps but is restless.

2PM Update

The Cardiologist (Dr. Vignale ....mispelled in last post) has called in a pulminary specialist to help sort out Sheila's heart problem. His name is Dr. Plump. We have not seen him yet. Sheila's blood pressure while still not reading at all on the regular cuff method sometimes is measuring 100 /65 as best they can tell using the doppler method. She feels slightly better but very sleepy. Dr. DiStephano (oncologist) just stopped in for the first time and said that her bone marrow biopsy still showed lukemia blast in her marrow. He said they cannot start anymore chemo until they can sort out her heart problem. He also said though the type of chemo she completed weeks ago, while more powerful than anything she had in the past, and can cause these types of problems, he is surprised that it has happened with only one round of this type of chemo. So as before this heart problem has to be sorted out before we worry about any lukemia treatments. This is what really stinks about the whole process.....the treatment is sometimes worse than the disease it is supposed to control/cure!

11:54 update

Cardiologist, Dr. Mackelhanny just in again. Her blood pressure now up to 91/61 and he said things starting to head in right direction. Just need to fine tune meds and get pressure up and blood acidity down but it now looks like right combo of drugs for her is in place.

News from the Cardiologist

The Cardiologist just left and told me they are adjusting Sheila's IVs. The electrocadiogram showed him that her heart is weaked as a whole as opposed to just an area of the heart. With just one area weakened it could lead to heart attack. With the whole heart in a weaked condition the problem is low blood pressure and acidocous in her extremities. As the heart tries to take care of the body's core, less blood is being pumped into her legs and arms and therefore acid build up occurs. They will change her meds to control this and try and get her blood pressure up aslo. I asked him what could have caused this because she has never had any heart problems and he said it could be any number of things, leukemia, chemo, meds..etc. They are having a tough time drawing the blood they need for test because her left arm cannot be used due to breast cancer 22 years ago and lymphnodes were removed from that arm. They also cannot use her right arm due to the Picc Line and because she had veins removed from that arm due to an IV needle infection back in New York last year. The cardiologist  just got the OK from Dr. DiStephano to use her left arm for blood  pressure monitoring and right now her pressure is 85 over 53. The plan right now is just to get her blood pressure up and the acid level in her blood lowered.   NOTE: The cardiologist just came back into our room to explain things to us. The CCU is full up and he has had his hands full. The plan like I just said is to get the right meds and dosages to  get her blood pressure up and the acidity in her blood lowered. He explained that he cannot know what caused this but many chemo drugs are heart toxic and "can" cause this problem. i asked hime why now after chemo was stopped almost a month ago and he explained that many times the chemo damage to the heart can be delayed. I asked if this is permanent damage to the heart. He said there is no set answer but many people due get ful heart function back after awhile and there are other drugs they can use to help her heart rebound. He also said Dr. DeStephano will have more answers for chemo related questions and problems. Right now they should be able to get the pressure up and the acidity down, it's just finding which of the many kids of drugs works for herr and fine tuning it as we go. Overall it's good to at least hear they have it narrowed down and a plan in place and working. SIDE NOTE: Many people have called our cell phone but I cannot use it in the CCU and there are no phones in the rooms either. I will keep Ulonda up to date by phone and she can call the rest of Sheila's family. I will also try and put all updates here as I get them from the doctors.

Sunday, August 15, 2010

Back in the hospital, this time to the Cardiac Care Unit

Last night (Saturday) about 4AM Sheila was vomitting and short of breath. We went right over to the Emergency Room and they put her on oxygen and took blood to find out what was wrong. She had been feeling more run down the last few days and though her blood work at the Cancer Center showed good blood counts, something was not right. The blood samples came back that she had acute anemia. They also did chest xrays and sent her up to the CCU (cardiac care unit) where we are right now. They ran alls kinds of other tests to see how her heart is doing and they still do not have a good answwer at this time. They gave her one unit of whole blood and her counts are starting to look good again. She has an elelvated heart rate and that could be due to anemia though. The cardiologist was in just before I returned to her room and told her his feelinng at this time is that he does not thing that the root problem is her heart, that something else is affecting it and they are runninng more tests. He is in contact with Dr. DiStephano and we should no more tomorrow when he comes by. They are also giving her some medications to protect her heart from stress until they determine the cause of all this. Right now (9:14PM Sunday) she is feeling better than when we got here and even ate some of her lunch and dinner.  Not much more can be said, we just have to wait and see what the doctors can find out and do about all this. That last round of chemo is twice as potent as anything she had in the past and they had to test her heart before giving it to her. That round ended over 3 weeks ago so I don't know what to think about all this developing now. I have many questions when I see Dr. DiStephano tomorrow.

Monday, August 2, 2010

Waiting in line for platelets

We are back at the hospital. We spent all day yesterday in the house because we didn't know how Sheila's white counts were doing. This morning we went to the ACC for lab work and to see the doctor. Good was her white counts were now up to 6500 and that's right at the begining of "normal". We could now at least go outside and to a restaurant if we wanted. The bad new was that her platelets were still low and she needed a transfusion. So off to the hospital it was for us. When we got here we found that the hospital had a new procedure and that we were to go to admissions first and do al the paperwork over from scratch. Now we will have to go through this routiine everytime we come here. Also when we got up to the blood room they also had a new routine of not even ordering the platelets or blood until the patient arrived. So here it is one and a half hours later and we are just sitting here still waiting on the platelets to arrive!

Friday, July 30, 2010

New poem written over a rough couple days

This Trail is Too Tough

We climbed up Roan Mountain, trees bent and all froze
Till forced to retreat and thaw out our numb toes
Howling north winds uprooted pines from the duff
But the trail we now take is proving too tough

We paddled kayaks in rain through the Misty Fjords
Among Orca with dorsals the size of surfboards
At night bears in our camp tried to raid the foodstuff
But the trail we now take is proving too tough

We hiked in the night over Baked Oven Knob
On wracked knees and sore feet, coarse as corn cobs
Up that Appalachian Trail you might have heard of
But this trail we now take is proving too tough

We camped with the alligators in the vast Everglades
With panthers and snakes and mosquitoes in spades
We froze in chickees till we had quite enough
But this trail we now take is proving too tough

We trekked in the desert, up  mountains, through trees
Baked in the sun then froze by the breeze
Sunburned and bug bit we laughed, “that’s not so rough!”
But this trail we now take is proving too tough

Twenty miles each day, with just bread left to sup
We’re long distance hikers, and we'll never give up
This trail we will beat in the end you will see
It is tough but we’re tougher; Toesox and me!


Wednesday, July 28, 2010

Blood counts up, all cultures negative, fever gone, appetitte restored!!

Today Sheila is feeling much better and has gone without a fever for 24 hours. Her white count is rising and is now 400 or .04 depending on how they phrase it.  I know Dr. DiStephano told me it was 600 yesterday but when the nurse told me that today it is 400, I had her pull up the last few days and it has gone from 0 to 100 to 300 and then today its 400. So it is still slowly going steadily up. Once it gets going it will start doubling each day until it reaches a "normal" range of 5000 to 10,000. All the bacterial cultures came back negative including the cut off tip of the old PICC LINE. Then we have to look forward to another round of chemo. So just what kind of infection she has/had is still up in the air. The bottom line is it looked liked Sheila has kicked this thing and is on the mend. Hopefully we will get out of here in a few days ( I know they need the rooms) and join me at our new We Care House. Hopefully Mr. Scabby Head will not stop by with a midnight casserole though!!

Tuesday, July 27, 2010

A new house, a bum, a gun and a neutropenic room for Sheila

Late yesterday Sheila was moved to a neutropenic room. This is a private room with double doors and it's own air filtration system to emliminate any chance of Sheila getting exposed to any nasty hospital infection. Everyone entering the room is required to santitize their hands before and after leaving. I am glad we are in this room for another reason. Theroo......a fantastic nurse we met last year when we where in here for a month. She is from Shri Lanka and is just an unbelievably great nurse and really nice to Sheila. Sheila ran another fever last night but it came right back down and today she is feeling pretty good considering what she has been through. This morning she had her usual Cheerios, Ensure and orange juice and finished all of it. A little improvement each day I can live with!
 Last night I left the hospital to get  things settled into our new We Care House. It is only one block from the hospital. When I was getting ready to go to sleep I heard a knock at the door. I thought it might be Carol, the owner, but it was late and I decided to look through the peephole to see. There on the doorstep was a very scroungy looking guy with a skinhead haircut, homemade tattoos and scabs and/or scars all over the back of his noggin. He would not face the door but kept his back turned away and was looking up and down the street. He knocked again then got on his cell phone.  I knew Mr. Scabby Head was not likely the neighborhood Welcome Wagon, here to bring me a late night casserole! I watched him through the peephole. He hung up his cell phone. He stared back at me this time through the peephole. Using the remote I turned on the living room TV and turned the sound up a notch. He knocked again as I looked through the peephole. I didn't know if he could see or hear the TV so I turned on a light that I knew he could see from the front door. Now he knew someone was home.  I could see the street but only my car was out there, he had not driven here as far as I could tell. He did not leave. Was he talking to his buddies around the corner waiting on him? This started to feel like a home invasion robbery in the making, at least that was my thought. If he was just looking for an unoccupied house to burgle why was he still standing there watching the street. He knew someone was home. Maybe he thought just an old lady and her sick husband, that was here the previous night and all last week. Maybe he had been watching them come and go. Scabby Head was in for the surprise of his, so far short life , if he took this to the next level. He seemed to be thinking it over, at least this is what was going through my head just two feet from his on the other side of the door. I tried to think of a legitimate reason he would be knocking on the door so late. I thought...ok, a census taker and had to stiffle a laugh. I was not overly concerned about all this, he was still at least on the outside......and...... I had a good was right where it my hand. I had made sure I had taken it out of storage after the last We Care House was broken into while we were at the cancer center. That was not going to happen again at least not while I was home! Good....Tony Tattoo was leaving now, headed down the walk to the street. But wait....he hangs a quick right and walks right along the front of the house staying in the shadows of the trees and bushes overgrown against the house. I watch his crater filled full moon of a head slowly go by the three living room windows. Does he not think he is being watched? Maybe he doesn't care. Maybe he has help. Does he not think someone may be calling 911? I briefly think of doing so then reason takes hold. Better to keep a close eye on Pus Pate here to see what he is up to. I go into the bedroom and watch him go by those two windows. He does not test any windows. Maybe he already knows they are locked? Has this dirtbag been here before? He turns the corner of the house and I watch Bandaid Brain disappear into the darkness. I cannot see him anymore. Our rooms are just on the front side of this 3 unit remodeled old house. The unit behind us is still unfinished and unoccupied. I know better than to go outside in the dark with a gun and try to find him. I wait a while, nothing happens, I assume he has moved on to other misadventures. Then I go to turn in, the shower can wait till morning. But sheets for the bed, Carol has taken them to launder because the last guests didn't bother. I dig out my sleeping bag, throw it on the bed and sleep like the dead..........with my brother's Smith and Wesson Airlight and his Wilson Combat D2 knife taking the first watch.

Monday, July 26, 2010

Dr DiStephano just came in for a visit....

and he said that they will get the infection under control and that some of the symptoms Shelia is having are directly related to the powerful chemo and are to be expected. Right now she has four bags of fluids/antifungal/antibiotics flowing into her and they aare completely new and much more powerful than the previous days. Alot of the misery, besides having this infection are directly related to her blood counts bottoming out because of the chemo. The process now is to let her body, with help from these powerful new antibiotics, bebound and build back new white and red cells and platelets. Later today if a nutrapenic room becomes available we will move into it. This kind of rooms have a double door to enter and an independant air filter system to keep and germs away from her as she builds up an immune system. I should be moving all our stuff into the new house later today and will be able to walk back and forth from the hospital as it is just a block away. There is also a full living and kitchen area that will be nice after living in Carol's remodeling project, confined to our one rooma and hot plate. I like camping but not like that!!

All nighter at the hospital and moving today

Was a rough night ....with Sheila running temps up and down, many blood samples to the lab, all her meds changed, put her on oxygen and looking at a possible fungus infection in her lungs. Between fevers she was actually feeling pretty good though and they still dont know what excactly is causing the infection. It is now 4:55AM and sometime today they will transfer her to a nutrapenic room with less chance of anything getting in to infect her. I am sure Dr. DiStephano will be in sometime today and hopefully with his help and maybe the lab results coming in they can sort all this out. Also sometime today I will be moving all our stuff into a different We Care House that Carol has and it is very close to the hospital. Sheila got very little, and I did not get any sleep last night and it's going to be a long day. Between the fevers all night, the nurses coming in every half hour for something and the delirious old man across the hall yelling out over and over and over, "IS ANYOOOOONNNNNEEEEE THEEEERRRREEEEEEE!!!!???" and " I DON"T KNOW WHERE TO PUT THE FIRECRACKERS!!!!" I feel like a hungover drunk who spent the night in the tank.

Sunday, July 25, 2010

Doctor stopped in, temp spiking again to 102.1

The weekend duty doctor just came by to check on Sheila and the nurse was also in taking vitals. Sheila's temp is back up to 102.1 and they are giving her Tylenol. They are also giving her more platelets. The doctor said that the results of the catscan came back and they show two spots on her lungs but they cannot compare those results with her ones from Dr. DiStephano until tomorrow to see if  those spots were there before. They are also going to have a gastronologist and a lung specialist check her out. They are both on the floor working the weekend but they do not know if they will get to Sheila before tomorrow. The hospital is full,  with people waiting on rooms having to be kept in ER until a room is avaiable. The doctor said that even with all the chemo and other drugs and changing out the Picc tht she should not be running fevers. She said they have to make sure it is not a fungus type infection as that would require differnet meds, so they are looking at that. Sheila will not be getting out of here today, thats for sure. Hopefully tomorrow being Monday her doctor will be in to see these doctors and maybe give us better info on whats going on. She never felt sick until all this "treatment" started again.

More blood,platelets,potasium,antibiotics

Today we have not seen the doctor as of yet. They are still running all the above untis into her to try and get things "topped off". I think the fever has subsided but they have not taken her temp in a while. Her stomach is what is bothering her the most and I am guessing/hopeing that it is only due to al the powerful chemo she has gotten. Last night they ran three sets of blood samples for testing and took a catscan of her chest. They did a chest xray just the day before so I don't know what they are looking for now. Hoping to hear some good news later today when the doctor checks in on her.

Saturday, July 24, 2010

The doctor says.......another night in the hospital

The doctor came in the room awhile ago and said Sheila's chest x-ray looked OK but there was a little spot of fluid on her lung. She is also still running a temp of 101.2 so she will stay in the hospital one more night and see if things improve. They are keeping her IV full of fuids and antibiotics.

A different day, same hospital

We are still at the hospital, last night after all her treatments they recommended that Sheila spend the night because she was spiking another fever. They also said her blood oxygen levels were still low. The nurse said that she thought maybe Sheila needed more whole blood but she had just received two units of whole blood and another one of platelets. The doctor on call at the hospital put her on oxygen overnight and gave her more fuilds to help flush out her system. They also took another chest x-ray and we have not heard back about that yet. So now we just sit here and wait to see what they will do next. Sheila feels pretty good and had a breakfast of Cheerios again. She ate some fish at dinner last night but still does not feel much like eating. We are hoping they will let us out of here, but she will still have to get her fluids and nupergen injection for the day, eitther here or at the ancer Center. Justing waiting to see whats next.

Friday, July 23, 2010

Temp just hits 103 but.......

the nurses here said that is not unusual after replacing the Picc line. They took it again a few minutes ago and it was 102.7 so at least it stopped increasing. They also had the x-ray results and the new Picc is good. They already have antibiotics going into her and fluids will be next and whole blood is on the way. I just gave her a couple Tylenol and that should help lower her fever.  I am glad we are doing this at the hospital and not the ACC. I am also glad Sheila ate some soup and least it makes ME feel better!

PICC line in, X-ray done...wating on results.

About an hour ago they put the new Picc Line in Sheila's arm and took out the old one, cutting off the end of the old to send it to the lab for a culture to see if, and/or what kind of bacteria may have infected it. They think this is what had been causing her fevers every night. They also took an x-ray of her chest to make sure the new line is installed properly and can be used to transfuse the blood, platelets and antibiotics that she needs. We are now waiting on the results of that x-ray so they can start the blood transfusion. A few of the nurses here remember Sheila from last time she was in the hospital and came in for a short visit. The nurses on this cancer ward are just fantastic and though the nurses at the Arlington Cancer Center are good they cannot compare with the professionals here at the hospital. It is now 2:45PM and hopefully we will not be here too much longer. I am hoping that in a couple of hours we will be on our way back to the house. The lunch that came for Sheila was hospital spaghetti and she wanted no part of it so I ate it! They did bring her some manderin orange slices and hot chicken noodle soup and she ate that very well. I think she will feel much better once they get some whole red blood back into her!

There's a man out on the roof wearing a surgical mask.......

and he's working on the air condensers.  If you have not guessed yet we are finally at the hospital. We were told yesterday at the ACC that the hospital would call us last night and tell us what time to be there. Big one called! This morning we got up early and headed back to the Cancer Center (the ACC). When we got there they had us wait a short time until they located our "orders", the magic envelope of papers that would let us be admitted into the hospital. We drove the short distance to the hospital, about one block and I dropped Sheila at the front entrance as I went to look for a parking space in the high rise parking lot. When I got the car parked I found Sheila in Admitting and a nice young lady offered to wheel Sheila up to the third floor to her room. We had only gone about ten steps when this "nice young lady" handed Sheila off to a hospital volunteer at the front desk and told him to take her up to room 3216. After repeating to him at least a half dozen times......"NO.... ROOM 3216!" I think he understood where to take us. The volunteer was about 85 years old and for his age was probably in very good shape, but, I didn't see how he was going to push her  wheelchair down the length of the hall never mind up to the third floor. He still seemed  confused as he led the way leaning on the chair as much as pushing it down the hallway! He managed to get her onto the elevator and up to the third floor and made it to the nurse's station. After turning in her papers at the desk he pushed her down the last hall toward her room. When he got closer to her room he kept repeating her room number over and over as her rolled right on past it. We both had to tell him, "RIGHT HERE!" After hesitating and doulble checking himself he did get us to the room OK. I am glad people like him still volunteer at the hospital but I don't think pushing people in wheelchairs was the smartest thing to let this guy do. I hope he found his way back down to his desk at the front entrance!
  Right now we are settled into room 3216 and Sheila had a bowl of Cheerios which she said was fantastic! She still has not been able to eat. Last night we went to Shlotzkies because she wanted soup but only managed to have about a third of a cup. Now we are waiting for all the work to begin.......two units of whole blood, one unit of platelets, take out her Pic-Line and hopefully install a new one (this is still up in the air), give her antibiotics and fluids in an IV and her nupergen shot in her stomach. Looks like a long day here!

Thursday, July 22, 2010

Hospital today maybe,, if not definately tomorrow.

Back at infusion today after lab and doctor. They are giving Sheila fluids and antibiotics. The doctor was going to do a bone marrow today but decided that her counts still have not "bottomed out" and will do it tomorrow. The hospital today has no outpatient room left so they will most likely send us to the hospital in the morning. The doctor seems to think that her daily bouts of fever are due to her Pic-line and he wants it changed also. This has to be done at the hospital. So now it looks like the trip to the hospital will include changing the Pic-line, gettiing platelets, getting whole blood, bone marrow biopsy, antibiotics and fluids. It will be a long day and may include and overnight stay depending if we have to go later today or in the morning. Sheila is feeling the best she has felt in several days and today we even split a breakfast of Chiliquelles and Fuzzy's Tacos before driving to the ACC. At the house last night Carol and her handyman came and tore out the closet in our bathroom in preperation for a new door into the laundry room. We have been without laundry access since she moved her grand-daughter into the main part of the We Care House. We were supposed to move to another house on the 20th but the people staying there are nott leaving now until this weekend. I guess we will move over there this weekend. Then at least we will have a full kitchen,living and laundry room for ourselves! Also it is just .03 miles to the ACC and hospital. Maybe we can even walk to it when Sheila feels better!?

Wednesday, July 21, 2010

Time to get out the hair clippers

We are at the ACC right now, Sheila is in getting her infusion of antibiotics and fluids and I am back in the waiting area. Since they remodeled the cancer center there are hardly any seats in the infusion area for family. So sometimes I can sit in a patients chair if it is unoccupied but I dont like doing that. Patients should not have to worry about some healthy person taking their seat or asking them to move.  She still cannot eat anything. I am hoping today we can get over this hump and she will start feeling better. I will have to cut her hair off tonight as it started to come out yesterday while she was in the shower. I was starting to think she would not lose her hair but being that the last round of chemo was twice as strong as anything she has had, I should have known better. Today we stopped for our usual McD's before the ACC and we got her a smottie to try but she could not even get that down. She said everything tastes like an old cotton Tshirt and also she has no saliva to help her eat. She is trying to drink alot of water but constantly sipping at a water bottle I am not sure she gets enough fluids that way. We wer also supposed to move to a new We Care House close to the ACC and hospital because Carol is remodeling the house we are in. I think there are still people in the new place so I don't know when we will move. I am not moving Sheila if she still feels bad though, carol can just wwait on the remodel. We are supposed to see the doctor after her infusion so I hope he has some encouraging word about her labs that were also done today. He said last week that he wanted to do a bone marrow but I don't think that will happen today.

Monday, July 19, 2010


   A few hours after leaving the ACC Sheila started shivering under the covers of the bed. Added two more blankets. Still shivering. Add a down sleeping bag on top of all the blankets. A little less shivering. Temp 101.7. Give her two Advill (dont have Tylenol) More time under blankets and she is sweating now. Temp 102.8. Shit! Strip off all the covers. Apply cold wet face cloths to her legs and head. Turn all fans on her. Temp 102.1. Time to go get some Tylenol. Run off to CVS. Return, she takes a couple Tylenol. Apply fresh cold wet face clothes to head, stomach and thighs. Temp now 100.1. Good! Fever is breaking! Another half an hour and she is feeling better and temps come down to 99.5. Now to find something good for her to eat. Boston Market chicken soup and cornbread and chocolate cake. Go to pick that up and also a turkey/green bean/new potoato dinner for me.  Return back to house and she is feeling much better and eats some of her soup and cornbread. She does not want the chocolate cake but I volunteer to force it down myself! Nothing like a nice relaxing evening around the We Care House. Just took her temp again and it's 97.8 .Hoping tomorrow is a much easier day for us both!

A Long Scary Day at the ACC

Well today we went to the Cancer Center to have lab work, get Sheila's nupergen shot and see the doctor. Sheila has not been eating at all and started vomiting last night. She has had no appetite and can''t keep anything down. When she went in to the lab area to have her blood drawn they could not get enough blood due to her shaking and weakness. They brought her upstairs to the infusion center to see if they could draw more blood through her Pic-line. When they got that done and I  got her a warmed blanket out of the warmer her shaking finaly stopped. I was sure they would end up sending her over to the hospital for red blood because she was so weak and pale. This is the worse I have seen her while not in the hospital. It turned out after seeing the doctor and getting her labs back that her blood counts were still down but not enough to cause these symptoms. She is just dehydrated and weak form lack of food. They gave her some fluids through an IV along with something for her stomach and more antibiotics (she also had a slight fever) and she is feeling a little better now. When she was in infusion I went over to Dairy Queen and got her a cheeseburger and smoothie-like drink and she managed to eat some of it. Right now we are back at the house and she is resting. She did have half a cup of chocolate pudding and some more of her smoootie drink. Tomorrow we only have her nupergen shot on the schedule. I hope she is feeling better tommrrow. I plan to get her a good dinnner somewhere later if she thinks she can handle it.

Sunday, July 18, 2010

Sunday at the ACC

We just got back from going to the ACC for Sheila's daily nupergen injection. Even on Sunday there are lots of people there for infusions and other treatments. We quickly got in and out because all she needed was a shot. Sheila has been feeling very run down and has not been eating much at all the last few days. Yesterday she said she wanted a "real" meal so we went to Cheddars but when the food came she could not eat it. Last night about  10:30 I went out to Arby's and she managed to eat about half of a  roast beef sandwich. Today she has not had anything. I went to Walmart to fill anothe prescription for her and picke dup two six packs of Ensure nutrion drinks. I hope whe will be able to get them down. She had not vomitrf once since this round of chemo started and though the pack was taken off on Thursday she still had upset stomach but has not vomited at all, so I guess that is good. That last prescription is for her upset stomach and I hope it works. Tomorrow we have lab and the doctor and I am hoping that her lack of energy is just from low red cells and maybe she just needs a transfusion on whole blood. We will know more tomorrow when the doctor sees her. I do know that she will have a bone marrow biopsy done on Wednesday.

Saturday, July 17, 2010

Easy Dat at the ACC

Today all we had to go into the Cancer Center for was Sheila's daily nepurgen injection and to draw blood for the lab. Tomorrow we go in for the shot only, then Monday back to see the doctor. He has said that on Wednesday she will have a bone marrow biopsy done.

Friday, July 16, 2010

Platelets at the Hospital Today

We kind of knew we would be making a trip to the hospital for a transfusion of platelets today. After getting her nupergen shot and blood work done at the Cancer Canter this morning we saw the doctor and sure enough he sent us to the hospital for platelets.  The doctor also gave her a prescription for the upset stomach she has been having. The plan now is to let her recop her blood counts after this round of chemo and then hit her with another round to get this into remission. The round Sheila just finished was twice as potent as the last time they put it in remission so I hope this does the trick!

Thursday, July 15, 2010

Chemo Backpack GONE!!

We just got back from the ACC with NO chemo pack! Shiela's counts are all bottoming out, meaning no platelets, white cells (immune system) and red cells declining also. Now she has to go into the clinic everday at least until the 29th for a nupergen shot, this is supposed to boost her white cell recovery. We have to see the doctor also tomorrow and I am  guessing we will be visiting the hospital for a transfusion of platelets.

Day 8.0 Chemo Pack to Come Off at 3PM Today

Well this morning we went to the ACC to have more blood work done and get Sheila's nupergen shot to help her white count climb back up. We have to go back at 3PM to have her chemo pack taken off after running for 7 full days now. Then tomorrow we have to go see her doctor and find out the blood work results and what treatments come next.

Wednesday, July 14, 2010

Day 7.5 Chemo Pack to Come off Tomorrow

Today we had to go to the ACC just for Sheila's blood work. They  took six vials of blood and sent us home. I don't know why they took that many, but when we got home they called and want her to come in tomorrow for more blood to be drawn. They are going to add yet another antibiotic also. Tomorrow afternoon the chemo pack is supposed to come off. I think they are going to check her blood again tomorrow to see if she need platelets. So the plan is now to go into the ACC early tomorrow and wait for the chemo pack to run out later in the day. That way if she need platelets we will not be looking at going over to the hospital lare in the day trying to get a tranfusion of platelets. We have been through that before and sat at the hospital until midnight!

Tuesday, July 13, 2010

Day 6.5 IHOP, Chips and TV

Today we had no appointments or treatments at the ACC so we slept late. 1030AM late! Too late for the McDonald's Value Menu breakfast. We went to IHOP  instead and split a pancakes, eggs and  sauasge meal and then got strawberry stuffed french toast for dessert! Then it was back to the house to do nothing at all. Yeah I  know...whats new! We had checked the movie listings thinking we might go see a matinee but nothing even anything half way decent was showing. So we now sit at the house watching TV movies, Sheila eating chips and me making tea. She still has her backpack and that will run until Thursday when they should take it off. After that I think what the doctor will do is let her counts bottom out then give her blood time to rebound and hit her with another round of chemo. Friday we go back to see the doctor and have lab work.

Monday, July 12, 2010

Day 5.5 Add Anti-Virals/Biotics

Today we saw the doctor after having lab work done. Everything still going to plan. No more blood thinning injections, just keep taking blood thinning pills and add  a prescription for antibiotics and antivirals. The backpack chemo should run until Thurday or Friday and we have more lab on Wednesday and another doctor visit on Friday. Sheila's white cell count is now about 60% and will drop to zero in the next week or so, hence all the antibiotics. Thats about it for now, just a daily routine of going to the Cancar Center and handing around the WE CARE HOUSE. Speaking of the WE CARE HOUSE, we will be moving to another house on the 20th or there abouts. Carol remodeled another home she bought and this one is only 3/10ths of a mile  from the Cancer Center and hospital and has more room for us, so that will be nice I guess.

Friday, July 9, 2010

Day 2.5 - Another trip to the Hospital

Another long day at the Arlington Cancer Center and the hospital, but at least now we are back on schedule with Sheila's chemo. Today after waiting to see the doctor he sent us over to the hospital so that they could put some dye in her Pic-Line and X-ray it to see if it was blocked or if the blockage was just in the vein. It turned out that the vein itself is blocked  but the line it still OK. Knowing that, they reconnected the chemo backpack, did the infusion for the other kind of chemo (red colored), gave her a blood thinning injection and sent us home. Today was the last day for the infusion of red chemo and her backpack will run until next Friday. We have to go back to the ACC Saturday and Sunday for blood thinning injections and then see the doctor on Monday. Its been a trying couple of days of treatments.

Thursday, July 8, 2010

Day 1.5 Chemo Halted Due to Blood Clot

It is 8:30 PM and we just got back from the ACC and the WalMart Pharmacy. Today all we had scheduled was infusion (chemo through her Pic-Line) and a check of the 168 hour Backpack chemo that was scheduled to run continuously until next Thurday. Sheila noticed her right arm was swollen and hurting this morning and when they saw it at the ACC they said she needed to go to Radiology and have a sonogram done to make sure the vein was still clear before they could do the infusion. Well it turned out after being sent back and forth between departments and having the sonagram done, that her right arm where the Pic-Line is installed was blocked by a clot. So after a conference with her nurse and doctor it was decided to take the backpack chemo out oof her port and stop chemo for tonight. She was given her infusion chemo as usual because that is given through an IV stuck in her other arm each day. She was also given a blood thining injection and a prescription for an oral blood thinner. Tomorrow morning at 11AM we have to see Dr. DiStephano and find out what is going to happen from here.

Wednesday, July 7, 2010

Day 1 with Toesocks Chemo Pack

Today we went to the ACC for Sheila's new round of chemo to start. They first had to flush her Pic-Line that has been in for a week and of course it was clogged and a couple of shots of Heprin would not even fix the blockage. They had to call for another chemical, I think was called Activase and that did the trick after about a hour's time. Then she had to have an infusion of chemo at the ACC and also a backpack of another chemo to run for seven days. We now have to go back for two more days of infusion at the ACC and then we are off with only her backpack running until it runs out next Thursday. We also have an apppointment with Dr. DiStephano next Wednesday. So we are officially off backpacking until next Thursday! Happy Trails!

Tuesday, July 6, 2010

Chemo to start in the morning from square one!

This morning we went to have Sheila's lab work and to see Dr. DiStephano. Her blood work is now starting to show the luekemia is back and so chemo is to start in the morning. Her MUGA scan showed her heart was ok to start this aggressive chemo and so tomorrow she will start two kinds of treatment at the same time. One type of chemo will be infused daily through the port in her arm and given at the ACC (Arlington Cancer Center) and another will also start tomorrow attached to her through a backpack setup and run for five days. The idea is to kick this thing right back into remission. When that round is complete we go back next Wednesday to see the doctor and do more blood work then more chemo. We know this routine well and it looks like our days will now be spent going back to the ACC everyday. Just hoping this next remission will be longer than the last!

Thursday, June 24, 2010

The Waiting Game Begins Again

We have been back in Dallas for a few days now and are staying at the WE CARE HOUSE in Arlington for now. This is the place we stayed last time Sheila had to have chemo treatments. Yesterday we went to the Arlington Cancer Center and had her lab work and bone marrow biopsy done all over again since the lab botched her last biospy before we left to drive north to the Appalachian Trail. It was heartbreaking not to be able to get back on the AT after getting so close. only to turn around and drive 1500 mile back to Texas. We tried to have a good time on the drive back and followed the coast to see some new sights and the oil slicked beaches of the Gulf, but with a new worry hanging over our heads it was difficult to make the best of it. We are supposed to hear from Dr. DiStefano tomorrow for some preliminary results, then the final vedict in about 8 more days. So we are stuck here in limbo waiting.

Sunday, June 20, 2010

Cafe Du Monde New Orleans

Yesterday morning we left Slidell, LA and headed for New Orleans. Toesocks just had to have a Cafe Au Lait and Beignets at Cafe Du Monde on Decater Street in the French Quarter. Being Saturday we knew it would be a packed house and being late June we also knew it would be a sauna down in the French Quarter. So off we headed about 1030 AM as the temps climbed to about 92 degrees. The original Cafe Du Monde was started in the French Market in 1862. It is still open 24 hours a day everyday except Christmas and whenever an occasional hurricane passes through! The dark roasted coffee with hickory is served black or Au Lait, meaning mixed half and half with hot milk. Beignets are french style donuts covered with a thick layer of powered sugar. They also serve iced Cafe Au Lait and so Toesocks and I ordered one of each and three beignets. We normaly shy away from fancy tea and coffee shops and go for plain DD or McDonald's but this is one place you just cannot pass by. The place was just jammed packed with hot sweaty people, the few empty tables that people were scrambling for were still covered with powdered sugar and dirty napkins and coffee cups from the previous customers and it ws every man for himself to get a table. There was a long line going down the street but we just went right into this open air cafe and luckily found a still dirty table that we promptly grabbed for ourselves! We still do not know why there was a  line as it was clearly seat yourself. Maybe these were all people on their first visit to NOLA? After we had our iced and hot cafe' and beignets we decided to walk around Jackson Square and also a block or two to see street performers and artists. Again it was jam packed with people spilling into the street from the densely crowded sidewalks as we pushed our way through the masses and into a bookstore to cool off. Inside Toesocks found a kid's book by a local author that was autographed and was about a giraffe that visits New Orleans. She has been collecting these signed children books almost everywhere we travel for her Grandaughter Maize. She must have quite acollection by now. When the crowd and the heat got to be too much we went and found Farkus waiting down by the waterfront and headed off to check out Avery Island next.

 Cafe Du Monde
Jackson Park

Buggy Tours of French Quarter

Artist's work and bike

Saturday, June 19, 2010

Apalachicola, Florida to the Mobile Bay Ferry

Well I have lost track of the days as we continue on our quest to drive from Virginia to Texas sticking as close to the coast as possible and only using the interstate when we need a cheap motel for the night. After leaving Jekyll Island, Georgia we continued on to Jacksonville, Florida for the night before we headed west to the Gulf. I wondered how bad the oil spill was going to be and if we would see any unspoiled beaches along the way. First we had to get across the north of Florida and that meant getting on I-10 and just doing 70MPH while seeing nothing but malls, fast food and billboards. We hate the interstate! We were both tired and in no big hurry so we stopped for the night in Madison, Florida with the idea the motels would be cheaper than in Pensacola, and we were right. Thunderstorms with flashes of lightning all the way at least gave us something to look at in instead of the urban sprawl and the traffic. The next morning we set off for Pensacola and the Gulf Coast. We set the GPS for the roads right along the coast and headed to Gulf Shores, Alabama right beside the water. pelicans flew right alongside the car as we passed over bridge after bridge. We thought we saw protesters as we breezed through downdown Pensacola but gave it no thought until we started seeing all the work camps and buses of temp workers heading to and from all the beaches. We stopped in Perdido Key just long enough to buy some postcards and a sticker for Farkus' roof box then passed right through Gulf Shores, Alabama on a narrow spit of land that would take us to Fort Morgan and the ferry that would get us across Mobile Bay. The beaches were closed and flying double red flags as we passed through Orange Beach and we started noticing that there were no tourists around at all! All the resorts and motel parking lots were full of work crews and heavy equipment for people cleaning up the beaches. As far as we could tell the beaches were not all covered with oil and looked pretty good to us. We saw none of the oil booms that we watched on TV everynight. When we reached the ferry landing we were lucky to get in the second line of cars on the marked  loading spots so we knew we would fit on the first ferry to arrive. The temp had to be one hundred degrees and we gathered with all the other waiting passengers in the shade of one of the massive oaks near the shore. Offshore there were lots of oil or gas platforms and alarms seemed to be going off on the one nearest to the ferry landing. No one seemed concerned though. The ferry showed up right on time and we drove Farkus onto his first ferry ride. Farkus had been running great the whole trip and we thought he might like the treat of a new oil change and a ferry ride! The ride was about 40 minutes to the other side and it was nice and breezy as we walked around the ferry. One the other side we checked out anothe old fort but decline the tour charge and continuted on to Pascagula, Mississippi.  Again we hugged the shore along US90 and drove through Biloxi and Gulfport, Long Beach and Pass Christian. Here we started noticing not only oil booms but miles and miles of beachfront houselots for sale with nothing on them but empty slabs. Hurricane Katrina!! Five years later and all you ever hear of was New Orleans. Biloxi and Gulfport looked like they had almost been wiped off the map as well and now five years later they are just now fixing the beaches, parking lots, sidewlaks and roads. A big number of houses are ...well...just gone! Last night we again got on I-10 to find a cheap motel and stayed in Slidell, Louisiana just north east of New Orleans.

Toesocks looking for hermitcrabs on Carrabelle Beach

Hermits in the tide pools

Shopping in Apalachicola, Florida

The Mobile Bay Ferry

Thursday, June 17, 2010

Hardeeville, SC to Jekyll Island, GA

"live with intention. walk to the edge. listen hard. practice wellness. play with abandon. laugh. choose with no regret. continue to learn. appreciate your friends. do what you love. live as if this is all there is!"

-Mary Anne Radmacher

Yesterday we left Hardeeville, South Carolina and headed back to the coast on 17 toward  Savannah Georgia. On the way we stumbled upon the smallest church in the USA. It was right alongside the road set back in the woods, surrounded by towering spanish moss covered oaks. We almost missed it, but Toesock's sharp eye spotted it and she said, "Hey,  did you see that?". We turned right around and were soon glad that we did. It was no bigger than a garden shed , about 10 x 15 feet and was built in 1949 by a local grocer named Agnes Harper. She had limited  funds and was told by the locals that she could not afford the kind of chapel that would do justice to God. She did it anyways and wrote the deed in the name of Jesus Christ and invited everyone to her bargin sized house of prayer. Mrs. Harper installed stain glass windows from England and the folding chairs (pews) have fold away knee rests. There is even a  glass star in the roof that lets the light in.

Toesocks in a church and it was'nt stuck by lightning!
Toesocks leaving a donation
After we visited the church we headed south on 17 hugging the coast and avoiding anything that looked like a freeway toward Savannah, Georgia. After driving on some very small backroads we came to a slightly larger road but still not what I would call a freeway and soon were on the beautiful Sidney Lanier Bridge just before the causeway to Jekyll Island. We had never heard of Jekyll Island and even though it was near 100 degrees and  very humid we decided to check it out. We soon came to a Visitor's Center and found out that the island used to be a sort of Millionaires Club back in the 19 century with plantations and a fort. It now was a tourist stop with nice beaches, historic buildings and the Georgia Sea Turtle Center. We had a good long  walk on the beach and I even went in for a dip. Then we checked out a book store that was housed in the old Infirmary and the incredible sea turtle hospital.


Toesocks finds a Horsehoe crab

Inside the turtle hospital
Turtle in Surgery

Turtle in rehab tank-
note patches on shell

                                                                    Loggerheads still nesting on island