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!!

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"
                      -stcoleridge-
                    
  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 Toesocks.............is that even possible?

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!

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

"Fear knocked on the door, Faith answered. No one was there." aafe+10

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

No words will come, only emptiness, pain and tears (aafe+10)

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

-yfp-


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

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"

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

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.

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.

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!

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!

-yfp-

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!!

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 handgun......and.......it was right where it belonged....in 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 wait....no 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.

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!!