What Is The Truth....

 Things are going well here on the home front. The summer flew by and ended with Hubby and Puddin' running in the Hood 2 Coast relay; he for the 5th time and she for the 2nd time. They have fond memories of it all. What was my role in the whole extravaganza? I made meals for them, got the house ready for the team to crash on the couches and feel refreshed after showers. I also cheered them on at the finish line. Actually it wasn't just I at the finish line. Pippin and The Poet were there too. No wait a minute......they wandered off lost in each others eyes and didn't actually see when the team crossed the finish line. They are oh so very cute together. But that is another story isn't it.

Now Puddin' has finished her 3rd day of school as a senior and is loving the whole thing. She set everything up so that she has half days and gets out at 11am. What teenage girl wouldn't love a schedule like that? Actually she is signed up to take a 2 weekend class on lifeguard certification. Then she plans to work her afternoons at one of the many indoor community center pools we have in the area.

So......
The real reason I set myself down today is because I want to share something. I will probably trip all over myself in effort to find the right words but the point is to eventually get it all out. I won't even go over and over what I write in effort to make it spin and be attractive the way I like it to be. I will just type and publish to get it out of my system.

I have been thinking a lot about Daddy, about San Antonio, about memories, about......about all of it.
It is not that I am not living in the now. I truly have many things to do and find purpose in every day. It is just that my time frame is still all scrambled.  What do I mean by that?  Well, without meaning to, I look at the date and think "last year at this time I was_______" and then fill in the blank with any sort of care giving for Daddy that I did.  Or Hubby and the girls will say, "remember last year when we did_______" and I have to say that I was not a part of that.  Those are just small trickles in a whole sea of trigger examples.

I love my memories. I truly do. They are my treasures that can't be bought for any price but earned by love.
But memories can also be overwhelming.  I have found myself asking God, "When will it be that I don't have to finish sentences with ....I was in Texas?"

I have set down so many times to write family back there and end up staring at my laptop screen lost in memories. I don't pick up their phone calls because while I know the best thing to do is to say "I love you" .....I still don't know what to say.

All of the above I know simply will take time to deal with. I have to give myself grace and patience.

There is another area I have been dancing around that tries to rob me of reason and it wants to be so complicated. That matter is my faith. Before I go any farther I adamantly say No I am not struggling with my faith. God is so real, so true, so alive and I am so grateful.

My struggle comes into play with the amazing things I am learning. Bad things happen because we live in brokenness and it is only by trusting in God that those things truly get fixed. I am learning that sickness is not God's plan. Time and time again I see and hear of people being healed. I see and hear on a regular basis that even doctors have no explanation and can only attribute things to being a miracle. I have even heard recently of people coming back to life because of some one's fortitude to not give up in prayer.

I think it is all so amazing. I think it is all so God and incredible.
But without realizing what is going on in my head, I let the whispers start.
The whispers said, Your daddy died because you didn't have faith enough to heal him. Because of you and your lack of belief your daddy died. You were the example for everyone. You failed them and you failed him.

I knew and do know the truth. Yes God's standard is that we have completeness in Him now. We do not have to struggle so deeply in despair and look forward to that undisclosed time when we are put out of misery and sent to heaven. The truth is that God purposes for us to live heaven on earth. He purposes for us to celebrate each day in victory. That is real victory, not "let's pretend victory". The truth is that God's standard is for everything to be fixed now and when that doesn't happen it is not because something or some one failed. It is because for greater unknown reasons it is the exception to the rule.

I would go through all of that in my head and fight back the whispers. But they would creep in when least expected and wear me down.
I kept hearing God tell me to go back to my journal entries and re-claim the whys of going to Texas. He wanted me to remember all of the miracles, the joys and the memories.
I fought it though. Looking through the memories meant I would have to view the hurts as well and I didn't want that. I kept telling myself that if I just stayed busy and occupied it would sort itself out.
Yeah....that is no way to handle a problem....especially a lie.

This morning I gave in. I had a handful of hours to myself and resolved to look, to make note of and to celebrate.
Oh my goodness there were so many things I had forgotten, so many joys, so many miracles, so much healing.  Yes some things made me cry.  But it was a different cry. It was an embracing and owning cry. If it makes any sense....all I can say is that instead of those memories owning me - I own them.

This afternoon I have a smile and a fresh feeling that I haven't had in a while.
 Daddy was definitely healed. No it was not a complete physical healing. He was healed in his heart, in his identity of who he is in God. Lives were changed, hearts were shared. So much happened that wouldn't have happened any other way. No God did not purpose for Daddy to get cancer. But He sure used it to bring so much unexpected good into the lives of many.

I learned that going through my journal and taking small notes on all of my time there....that brought about 16 pages of miracles and important things that would not have happened if I had not been there. I didn't fail anyone. I did the best that I could.

Thank You God for your truth, for your patience and purpose. Thank You for being always here and there and everywhere at the same time.

The Funeral....

Yesterday was Daddy's funeral service. How appropriate that we were able to make arrangements for it to be on Veteran's Day to honor him. The service was beautiful. I have been to a fair amount of funerals in my life for family and friends but none have ever been as difficult as this was. I was completely unprepared and it took me quite a while before I could walk into the room where Daddy's open casket was. Later, I felt the earth spin under my feet when the honor guard presented me with his flag and as the gun volley rang through the air I could feel it echo in my heart.

I am so very tired and find myself stopping in the midst of the simplest task. We are taking a few days to try and help get some things organized with the house and will fly back home on Monday.

Below are the things my brother and I shared during the service. I am so proud of my brother. Before he shared the poem he had written a few years ago, he gave everyone time to think about their relationships with God and the assurance that they too could have access to the strength and comfort that God generously gave to Daddy in this last year.
Here is the poem he wrote....

My Pop

My Pop you should know that I love you so.
You are my friend, my guardian and mentor.
There are so many gifts you've given to me
that I would like to thank you for...

You showed to me what it is to be
Light hearted but not fully a clown.
You taught me how to ride a bike
And to pick myself up when I've fallen down.

I've inherited your laugh and your love of words,
Your vocabulary and your diction,
And even your knack for pausing mid-sentence
..........
To make sure they are still paying attention.

I've been given your walk, your swagger and strut.
Man I got some teasing on that one.
but I just flash 'em your smile and a raise of the eyebrow
And together we all can laugh some.

All this and more you've passed to your son
To mold me into a good man
And I'm proud to be what you've helped me to be
In your image, the man I am.

Here is what I shared.......

I have been trying for days to figure out what I could possibly say that could sum up the life of my daddy. What could I share with you about his character that you don’t already know? How could I put to words the joy and honor of being his little girl for almost 40 years? Even ample use of a thesaurus doesn’t fully give meaning to his determined and unending devotion. And the wealth that I have owned in my relationship with him I have seen magnified over and over again in each of you.

While it pains my heart so greatly to know that I won’t feel those snuggly cuddly papa bear hugs anymore or hear his voice saying, “Good night angel. I love you.” I know that he is in the most amazing place now and I am so happy for him. He is not hurting and he is surrounding by so much joy and love from the amazing star breather and universe creating God that made all of our lives and relationships possible.

Instead I want to share with you a dream that a friend of mine from back home had just before Daddy passed away. This friend never met my daddy but has faithfully prayed for him as well as all of us since the beginning of his sickness. Here is the dream she saw….

Jody's Home-Going

I saw 2 very large angels with gold wing's that nearly touched the ground. There were 2 large gates with 1 angel in back of each gate. The air was tense, like the feeling at a race before the gun goes off, or your team runs on the field. I could tell the gate angels could hardly wait.

A large group of restless people were a short distance from the angels. I did not hear a sound, but I knew when the Lord said "now", in a normal tone - like saying hello if He first met you.

Each gate angel grabbed their gate and threw it wide open. The crowd roared and ran forward. Every person wanted to be the first to hug, shake hands, or pat Jody on the back.

The crowd was so large those toward the back could not see who had arrived. Then people in front started calling back. It's Jody! It's Jody!! It's Jody!! Jody's Home!! Jody's home!! This is as much as I saw, however I have a very strong feeling the party is still going on.

Eternity...

When I posted my previous update a couple of days ago I received many encouragements and comforts via email. One in particular I want to share here is from a friend back home that said:
This morning just as I woke I "saw" the following "picture." Two angel's with very large wings. Each holding on to very large gates. They were looking down the road, waiting to throw the gates wide open for your father. A crowd in back of them is waiting to welcome him home. (I saw this before I saw your email.)

My daddy, always watching over others and wanting to never bring extra attention to his own needs, even had his way in his last moments. For hours into the night myself along with my sister and cousin all stayed by his side holding his hands and soothing him as his body worked to keep doing what it was made to do.
At 12:15am in the single 5 minutes that we stepped out of the room and the nurse went to go get something.....that was the time that he decided ok everyone is occupied. Now I can do what I need to do with no fan fare without anyone fussing over me.

My daddy is now at peace and more healthy and happy than he has been in his entire life. There is no more pain, no more sinus problems, no more stomach irritability, no sore nerves, no arthritis, no nothing.
That has all been replaced with God's unceasing never ending joy in a new body that will never age or break. He is immersed in a beautiful forever atmosphere of perfection the likes of which our imaginations can only grasp the concept of in a minuscule reality. He is with his parents and siblings and wife and most importantly he is with the Creator and Artist who fashioned his life out of love and intense devotion for a purpose far beyond this temporary earthly time.

Those who didn't receive a phone call from me please understand and don't be hurt.
Knowing that our time was short I pushed myself in the things I felt mattered most. Now my body is completely depleted from lack of sleep and my feet and ankles are so swollen I can barely walk. My cousin has devotedly stayed by my side to tend to my needs in all the things I have not the strength or thought process for and I am so grateful. My husband and girls will be flying in tonight and other family is on their way as we begin working out details for the next few days.

Thank you for all your prayers over these last many months.
Thank you....

Changes...

So much has changed.
The strength of our minds and what we will ourselves to push through has never been more apparent to me than it is now. It amazes me to look back now and realize just how much Daddy has been pushing himself through with his continual response of "I'm just wonderful".

Wednesday morning at 5am Daddy got up from his chair and in 3 steps he lost the last of his physical strength. With God's help I was able to keep both of us from falling and fen angled him back into his recliner where I balanced him on the edge of his seat for almost 2 hours until my morning help arrived.

Daddy is now comfortable in the bed and I must keep him medicated around the clock for his safety and peace. Once he became weak, Daddy's physical health declined rapidly. In a matter of hours we went from being able to walk outside and carry on short conversations to my own fearing realization that I couldn't not safely provide care for him by myself.

Our amazing angel, our hospice care manager, began the process the yesterday morning of getting around the clock nursing staff in here to help me. I am so grateful. Such a weight has been lifted off of me in knowing it is not my sole responsibility to continuously assess Daddy's vitals and think of every angle of his care. It is such a relief to not have to plan out how to turn him and change him by myself. The nurse here has helped me to adjust his medication and get him into a place where he is more comfortable than he has been in a week.

Despite his lethargy, his body's refusal for nutrition and hydration as well as his lungs becoming more wet by the hour.....he still tries to lift his hand and mumble when I whisper "I love you" in his ear.

My brother is here now and he has been such an amazing support. His presence here has given me the opportunity to relax my mind and not think ten steps ahead. As he laid his luggage on the floor he was asking me to show him how to use the various pieces of medical equipment here so that he could do everything that I had been doing.

I don't like to leave Daddy for very long and I sleep on a chase that I put next to his bed. But having the nurse here last night gave me the opportunity to feel safety in submitting to sleep. Until the nurses arrived with their blessed help I had been administering calming medication every hour with no breaks for 3 days straight and sleeping in 3o minute increments.

Family will be driving in today and Red Cross has made the necessary arrangements to get our youngest brother back here from Iraq.

I don't know what will happen now but I am so grateful for God's hand in keeping us safe and for providing caring and gracious people all around.

The Stirring Spoon...

Last night Daddy fell again. It was a very innocent thing and as we are learning....stuff just happens.
He was outside with a family member and went to lean against a support post but missed it all together. That sent him spinning and he broke his fall on the corner of the house with the middle of his forehead before landing on the ground. He has scuffs on both elbows and both knees as well as a skinned up "beauty spot" on his head about the size of the palm of my hand.
Poor guy.

Hospice came right out and did an assessment for concussion and bandaged him up nicely. I sure am grateful for their 24 hour services. It is such a blessing to have someone just a phone call away while Daddy can stay calm and relax in his recliner. And as an extra benefit, I have been told over and over again that our nurse is the best case manager in the whole division....which I agree. I am so grateful for her professional knowledge as well as her support and encouragement as a friend.

Daddy accepted the bed with ease. Thank you! My cousin came over the morning it was being delivered and explained it to him in a way that appealed to him most...his logic. There are some things that I can get away with getting him to do because I am his daughter. But other things like the bed...he wouldn't have accepted it from me and would have put his foot down in authority. Those things then default to my cousin and she handles it all very well. It was simply a matter of : using his insurance to its fullest advantage. This way we have a bed here that we didn't have to go buy and its available if anyone happens to need a nap.

Plus with it being electric we will use it to do his dressing changes and it will really save on our backs because it can raise in height. Being the loving man that he is, he wanted to do what he could to make us more comfortable. Yesterday after his bath aide left (which was a male aide and they got along wonderfully praise God) I set him up in the bed for clean dressings and he fell asleep for 30 minutes! Yahoo! I will take every milestone we can get and celebrate gladly.

His dreams come and go. Sometimes we are sitting in the bleachers waiting for the ball game to start while others are a dream that rather resembles an old tv show. He even said to me, "I know this sounds like some crazy tv show but I swear to God its the truth. Please believe what I am going to tell you."

Whatever his story is, I have learned to go along with it as best as I can and he will usually refocus or get tired. It stresses him more if we try to argue and explain reality.

This morning was a bit different and he was quite determined with his thought process for over an hour and a half before sleep over took him again. He'd had a fitful night of sleep after his fall and was wound up pretty tight. He was determined that he needed to go find something in the front yard and commented casually that he might just take a quick climb over the fence to go after it. After going through the front door we got all the way next door before I was able to coax him back into the house by using the logic that it was 55 degrees outside and we were in shorts and pjs.
Since he has fallen back asleep I have stood guard over him willing the phone not to ring in disturbance. I am praying he wakes with a calmness and feeling refreshed.

I look at him, this man that is my Daddy and even now I am so grateful to be here. I don't understand all that has happened to him in such a short amount of time but I see he is still in there. Our minds are a powerful thing and he has an amazing memory. It is just that something of a stirring spoon took a twist inside his thoughts and swirled them all together.

He is still my loving and caring Daddy.
I don't know what memory he was entertaining last night but as we were getting ready for sleep he grabbed my hand and said, "I want you to know I saw what you did for that little boy today. You stood ground when no one else would and I admire you for that. You are a very special woman. Tomorrow is going to be another shock wave to tend to but know that I will be there standing beside you. It will be my honor to do so." That sort of stuff makes me want to hug him and never let go.

My brother will be here in 2 days for a weekend visit. I am so grateful he can come. Daddy is really looking forward to it too. When I first told him a couple days ago about the impending visit he welled up with tears. Every day since, he brings it up several times that his son is on his way here and how much he has been looking forward to more time with him.

For now I must get going.
Take care and enjoy your day to its fullest. In all that you do know that you were created with purpose and destiny and fashioned with an everlasting love.

Thank You God for your love and support that never fails and never ends. Your whispers of encouragement in the gentle embraces of a hug and even in the breeze tickling through the trees speak of your amazing presence.

Heart Blessings and Recipes.....

My step brother is spending the night tonight to give me a full night of sleep. Praise God I am so grateful for the help. Daddy was up every half hour last night until about 5am. I never could figure out the right combination of too hot/too cold or too bright/ too dark until he realized himself that he was having a hard time. Then the silent tears on his face told me he needed a hug and a prayer and he was instantly asleep.

When we come to mind this weekend please be praying for us. Even though he is so weak and forgets what he is doing in mid task....he is upset that I ordered a bath aide and insists he can do it all by himself. I haven't even broached the idea that a hospital bed is being delivered on Monday. I am going to have to catch just the right opportunity and phrasing in presenting it to him because he feels that having that bed here is a representation he doesn't want to deal with.

I completely understand that and have held off for a long time because of his feelings but my back is really killing me as I try to do medications and dressing changes stooped over his recliner. A bed will be safer for him too I think. Many times at night when he is disoriented he says to me, "oh by the way miss. Where should I sleep this evening?" I explain that he has preferred his recliner for the last several years and he is happy with that but I sure would love to point him to a real bed.


The above picture was taken a bout a month ago when some of Daddy's special friends were visiting. They sent it to us in the mail the other day along with other pictures and a card full of loving well wishes. The original picture is much better than this one. I just took a cell phone shot of the original so I could share it here.

Why is this picture special to me? Yes, it is of me and my daddy. But I also see something in this picture that I didn't share with anyone when it was taken. For the past few months I have been sure to be the picture taker for people who visit because I know they want something to cherish and hold to. But my last picture with him was back in March when we did The Melting Pot dinner. I had secretly been asking God if I could have a picture taken of him and me but never felt it conducive to the right time in our daily routine.

That is just what happened that day. I was snapping pictures with every one's' cameras and then his/my precious friend said, "Okay now its your turn for a picture." I wanted to cry right then and there with gratefulness but held back and tried to memorize the feel of Daddy's arm around my shoulder. I've had a million hugs from him since then and I cherish each one. But this one was somehow different and I felt like we both knew it.

~~~~~

A couple of days ago my step brother was over for a visit and Daddy was taking a nap. Having an extra person here afforded me the opportunity to do some baking...which is huge therapy for me. I do enjoy meal cooking when I know others will enjoy it but I stress over the tiniest detail in wanting everything to be right....and always end up making way too much. But baking is something like breathing for me. Give me a recipe to bake and focus on and my step suddenly gets lighter.

That day I chose to make almond cranberry biscotti. I know that sounds like a crazy time consuming thing to make given my circumstances right now but I loved every second of it. I figured even if it took me 3 days to do the double baking in between Daddy needing me then that was perfectly okay by me.

I have made this recipe a few times now and though I have many biscotti recipes at home, this one has become my favorite. It is really easy and with having no oil or butter in the ingredients list it makes for a pretty guilt free decadent treat. I am sharing it with you here so you can give it a try and enjoy it too.

Cranberry Almond Biscotti

Ingredients:
2 1/4 cups all purpose flour
1 cup granulated sugar
1 tsp baking powder
1/2 tsp baking soda
1 tsp ground cinnamon
1/2 tsp ground nutmeg
2 large eggs
2 large egg whites
1 TBSP almond or vanilla extract
1 (6oz) package dried cranberries
3/4 cup sliced almonds
optional: 1 bag Hershey's Dark Chocolate Chips (for drizzle and dip coating)

Directions:
- Preheat oven to 325 degrees
- Combine dry ingredients in a medium mixing bowl.
- Whisk together eggs, egg whites and extract in separate bowl
- Add liquids to the dry ingredients and mix with an electric mixer on medium speed (I just use my clean hands so I know for sure when it is all mixed from the bottom.)
- Add cranberries and almonds and mix thoroughly.
- Using a liberal amount of flour on your hands, divide the dough in half on a cookie sheet and shape into logs approximately 14" long and 1 1/2 " wide.
- Bake for 30 minutes.

- Reduce over temperature to 300 degrees.
- Take biscotti bread off cookie sheet and place on cooling rack for about 15 minutes.
- Cut biscotti into 1/2 inch slices and lay on their sides on cookie sheet.
- Bake each side for 10 minutes.

- If you would like to coat with dark chocolate for an extra nice touch (both on the palette and presentation):
- Melt dark chocolate chips in a microwave safe bowl stirring at 30 second intervals to keep from burning. (Usually takes 1 1/2 minutes total)
- Lay wax paper out on the counter.
- You can chocolate your biscotti different ways:
* Dip one end in and then lay on wax paper to harden. This gives a sweet treat while keeping fingers clean while you eat.
* Drizzle by spoon over biscotti that is already standing up on wax paper. Chocolate gets everywhere but it is fun art work.
* Spread chocolate on the bottom of biscotti with a spoon and then stand on wax paper.
- No matter what you choose, let the chocolate set for a few hours and then pull off the wax paper and store in loose covered container.

Makes approximately 2 1/2 dozen.
Also makes a fun gift accompanied with some homemade hot cocoa mix.
(I use empty sterilized old candle jars for putting cocoa mixes in...but that is another recipe to share on another day.) :-)



Enjoy and be blessed in knowing you are so loved.

The White Room...

On the whole....
We have all either had the kids / seen the kids / or been the kids (that incorporates everyone) who would protest at the thought of being tired and not want a nap. Yet when the magical slumber finally overtakes and does it's battery charging, the protester wakes up with a new outlook on life. As we grow and mature in emotion we learn coping skills to listen to our bodies instead of covering up that little voice that says "I don't wanna".

I am learning that this is one of the things that my daddy is losing. As his body and mind get tired; he fidgets, mumbles, arranges imaginary items and slips more into that confused state where all time lines become one.


I wrote the above last night after Daddy had gone through several hours of being tired but not wanting to sleep. Even as he was slumped over in his chair he still wouldn't let me lay back his recliner and kept waking himself up to do imaginary sorting tasks. It is so hard. I feel for him. I can see when reality hits him that he hasn't been his usual self and it scares him to be out of control of his normal behavior. Watching him deteriorate from cancer and chemo...I used to think it was a cruel thing. Now that his short and long term memory is failing I think it is the most horrid thing for a person and their family to have to cope with.

I know that the stories I relate here can be overwhelming and heart breaking to read and imagine. If they get too much to bear, it is okay to not read. I understand. But I want to encourage you to read beyond the pain and continue to see the ways that God is bringing us comfort and showing we are never without Him. With God.....well there is simply no other way I could have the strength to bear all of these heart wrenching months and still find joy in things.

This morning Daddy woke to thinking he was in college and I was one of his fellow peers. While I never pretend to be someone I am not, I do go along with his dreams now because it is less stress and trauma for him. Usually he will simply give up on the dream and commence to enjoying whatever I set us to doing. I convinced him that we didn't need to be in the living room (he called it the lecture hall) and we could instead bundle up to head outside to the patio (he called it the commons smoking area) for a cigarette break.

He marveled over his dogs and was very worried that they would get lost in the yard (he called it the campus) but I assured him we were in a fenced area and they were safe. It was quite a blustery morning and I offered to go back inside to fetch a blanket for his legs much to his thankfulness. I was gone all of maybe 15 seconds.

When I returned with the blanket he looked at me with tears covering his face and said, "What is your name again?"
I pleasantly said, "Oh it's Julie."
Instantly pain, shame and fear became his expression as he threw out his arms to me and blubbered, "Oh Julie my baby girl! My precious angel baby! I didn't know who you were! I am so sorry!" Then he threw the blanket off his legs and patted his lap. "Come on baby. Come sit in your daddy's lap and let me hold you please. Oh my baby. My baby girl."

As careful as I could, I did balance myself into his lap.....because that has been such a wish of mine all these months....the comfort of being in my Daddy's lap one more time.

He switched into protective father mode and ushered us into the house out of the cold, tears still streaming as he marveled over his little girl. I offered him some breakfast and asked what he desired. His response was, "Baby girl anything you want to do for me would be wonderful. Just surprise me."

I walked over and gave him a hug and that brought on a fresh wave of deep soul wailing as he sobbed, "I will take that over anything any time. I am so sorry I wasn't a better father to you. I should have done so much more."

I held his face in my hands and said, "Oh Daddy, You are the best daddy in the world and I am so proud you are mine. I wouldn't change anything."

At that point my cousin walked in for a quick visit after getting off night shift in ICU. I was so grateful she stopped by. Poor thing didn't know what she was walking into but took over for me for a few minutes. She had Daddy tell her about his dream in hopes of being able to shake it off. He said that when I went to get his blanket, some people ushered him into a white room and told him to sit down. Then they all began looking at one another and asking the question, "Do you think he is ready?" "No not just yet." They all looked at him and said, "No you aren't ready yet."

When he told her that part, the tears came fresh as he said, "I wanna be done. When will it be enough?" He grabbed our hands and pleaded, "Please pray with me." We prayed for peace, we prayed for comfort, we prayed for clarity. Then he settled down and went to sleep.

That was all in the first hour or so of the day. The rest of the day has been pretty uneventful for him as far as drama goes. My step sister came over to be with Daddy while I got out for a few hours of reprieve and errands. I met with one of Daddy's work friends for lunch. She is such a sweet young woman who thinks of my daddy as kin to her own in her heart and I thoroughly enjoyed our time together. Afterward I did things like cut my hair, bought our grand daughter her birthday gift and shopped for groceries.

Once I got home I met with the hospice nurse and did our mid week check up. I ordered care for a bath aide to come in three times a week and also for us to have delivery of a hospital bed. Daddy is not going to like that at all but I will have to cross that bridge and tell him eventually. I think at this point it is better to have it here and not use it than to wish we had it and not have it. Our nurse again stressed to me that even though Daddy is confused now, there will come a time soon when it will be more so. She made it clear that whoever needs to see him while he is clear that they really need to do it now.

Physically Daddy is getting around well with his walker and has good strength. Sometimes he even grumbles and rolls his eyes when I catch him trying to walk unsteady without his walker. I am working hard at getting his calories into him every day but so far I have only succeeded in 1000 per day. I can't use the feeding pump anymore because the tubing confuses him so much. His "figure things out by taking it apart" persona wants to do just that when he sees this strange tube coming out of his belly OR when he wakes in a dream state it is simply too much for me to wrestle with as I deal with imagined places and people. So every 1 1/2 hours during the day I bolist his feeding and water into his peg tube via syringes. Before this last round of chemo he was doing 2500 calories per day. Eventually I think this 1000 calories will take a toll on him but I am doing all I can do and don't chide myself for it.

And life is still going on in other areas of my heart as well. Dear Pippin had the wonderful experience of serving jury duty this week. It was quite a journey for her to get the time off work and venture downtown on mass transit to the city courthouse across the river but she did and I just know this has all been one of those milestone growing experiences for her. I am so proud of her.

Puddin, my baby, is about to turn 17 years old in 3 short days. Hubby just had parent teacher conferences last night at her school and heard glowing reviews from all. You gotta know how exciting that is to hear as the mama. She is handling her school schedule with extra zero periods and then social life with being one of the band drummers for youth and singer for adult worship very well. I am proud of her too.

Father God I thank you for your care, your grace, your mercy, your love, your presence and your never ending encouragement. Thank you that even when Daddy was so desperate today he knew that You could make things better. Thank you for clear starry skies tonight and the cool wind that blew today giving me a ticklish reminder of home.

Swirled Together...

I am amazed at how quickly things have changed. Just a few days ago the chemo had robbed so much strength that every step Daddy took was a teetering brink of disaster and I was sure he and I would both end up on the floor even when using his walker and a gait belt. I feared every sound would wake him from a nap and bring about a new barrage of incoherent confusion. I don't know how else to relate it, but it sorely reminded me of when the girls were babies. I slept when they slept. My eyes and ears were in tune to every breath and movement they made to guard over their safety. That is life with my daddy now.

Things are a bit different now. We have started him on a medication cocktail called ABH which is an acronym for Adivan, Benadryl and Haladol. I know using the drug Haladol brings concern for many because of its reputation. Frankly the hair stood up on the back of my neck when our hospice nurse first suggested it. But I have now learned that the combination of the three together offsets those side effects. For us it has become the key element in balance for Daddy.

The ABH is counteracting the agitation and anxiety along with his confusion to a certain extent. The nurse says that over time the chemo treatments have really taken a toll on the cognition firings of his brain. Like I said before, it is how his body has shown over time to handle stress. We are all realizing over time we saw signs that he was pretending and going with the flow when he wasn't sure about things. We attributed it to him waking from a nap or confusing the days because he didn't get out of the house much. It was so much more than that but he didn't want to admit it either.

The ABH is helping to balance that out. Eventually we will need to increase his dosage as things progress. For now his time line is blended with a somewhat manageable mix of past, present and dream images all at the same time. He knows me as his daughter, trusts me to answer all of his questions and do all things for him. At the same time he questions several times a day who's house we are in or when I decided to move away from Phoenix (even though I have never lived there). He will regularly ask me to get his brother George from the next room (who died some 45 years ago) and then, like last night, cry at his own admission that brother Marvin will be the last one alive of all the 6 boys. I have to give him constant directions around the house because he forgets where items as well as rooms are and often thinks we live in a 2 story home instead of a ranch style. Last night when I told him it was a one story home again he sighed, looked me in the eye and said, "Julie, just go ask your mother and she will explain it all so you can understand ok."

This morning he was too agitated to sleep so I gave him some mail to open. I don't mean it to sound bad by saying I did it to occupy him. It is just that his brain needed something to focus on. He can't focus to read what he is opening but he knows the envelopes need to be opened and it calms his need of knowing he is supposed to be doing something.

Physically his strength is returning from the run of chemo. He is more sure footed and I stopped using the gait belt 2 days ago. His strength doesn't last long as we found last night when he wanted a shower. It took us both a hour to complete the task because of needing breaks. I think from here on out I will arrange for a bath aide to come by a few times a week.

Over the weekend my step siblings and cousin came over for a meeting so we could all be sure to be on the same page of understanding. While I know they have their own lives: families, homes and jobs to tend to....I have asked for help. I can't keep watch over Daddy 24 hours a day with no breaks at all and they totally understand. I have asked for a minimum of one day a week to run errands and get away and 2 nights a week to get a full night of sleep with no worries. I also posed to them that while I can sometimes pick up the phone to call for help, I need them to be making most of the effort to check on us. Much of the time my hands are too full to think of grabbing the phone for balance. They understand completely and want to do whatever they can to pitch in and help; not only for my sake but for spending time with Daddy.

There is only one in the family that refuses to come over right now because it is too hard to accept and see Daddy this way. I Know it hurts greatly. I understand and can only pray that God and time will heal the painful reality before the are regrets.

For now that is all I can update you with.
Thank you so much for your faithful consistent prayers and encouragement.
God bless you richly as you go about your day.

One...

One chemo treatment: One dose of chemo has made him so weak that while smoking a cigarette he falls asleep in mid drag and I must be on constant watch to put out burn spots. I know it's bad that he is smoking but muscle memory makes him want it and it is easier to appease than to re-direct him.

One minute: One minute of stepping away to tend to something else and I must pray because it is very likely he will wake up and think he needs to go stand in line for breakfast at the chow hall or something. Yet late at night when his energy is stored up from 20 hours of sleep he doesn't remember that these last weeks have been hell.

One phone call: One phone call from the oncologist said that the chemo is obviously having severe stress effects to his body. He confirmed that all the testing we did a few days ago was indeed negative. The only solution is that there are either small cancer cells in the fluid of his brain OR his body is struggling to process the chemo in his system. That one phone call brings relief to us in the form of validating what we have all been witnessing.

One person in pain: One person has accused me of being too ready to let my only Daddy die because I am home sick and ready to leave Texas. That one said my care is putting him in the grave faster than necessary. It was the one week of grief training that I had 4 years ago that helps me to know those accusations are seeded in the volatile roller coaster of emotional acceptance and so I firmly work at not being a product of my environment and do not engage. I choose to have my environment be a product of me.

One conversation: One conversation between Daddy and I left me explaining what the doctor said. As I said before, Daddy doesn't recall how hard things have been for him. He can't accept that 2 weeks are gone that he can't account for. He thinks he has woken from a simple nap and doesn't understand why the doctor wants to halt treatment.

One dream: One dream makes me wonder if I will get him back at all. He woke at 6am referring to me as the bus driver and kept politely begging me to let him get off the bus so he could go visit his brother in Chatham (9 hours from here). After 20 minutes of explaining and showing him around the house he all of a sudden grabbed my arm and with fear and panic flowing through his eyes began to shake with uncontrollable sobs, "Julie where are we?! I don't understand." At that point I did the only thing I could do. I hugged him and prayed one prayer. I prayed for his clarity, for his peace, for his understanding. He prayed too in between sobs and then calmed down and wanted to go back to sleep.

One cough: One cough woke him from a nap and he asked me to go get his dad. I had to explain to my daddy that his dad is in heaven and has been there since Daddy was 12 years old. Again he cried, "But I want to see him. Please go get him for me." Then he went back to sleep.

One day: One day blends into another. I know I should be utterly exhausted. I probably am but don't recognize it. My one God, my only God, the earth maker and star breather of the universe who promised to never leave us alone, who promised to cry with us and cope with us and be our all in all for every situation in our lives; He infuses me with a constant ribbon of strength like I have never felt before. How can this season of my life be the most horrible thing I have ever experienced and yet the most precious thing I have ever encountered all at the same time?

More Tests....

I am not too sure right now how to start this update but I think that enough things have happened now that it is important to get this out to everyone.

Over the last few weeks, and increasingly in this last week, Daddy has been changing in his ability to be in a coherent state of mental awareness. His dream state has increased and it is getting difficult to talk him back into reality when he gets his mind set on a plan of action. Last week I stepped outside to bring one of the dogs in and came back into find Daddy on the floor. He had jumped up in a sleep state and was trying to accomplish the tasks that his dream told him to do. He was on the floor because he was still hooked to his feeding pump and had tripped and rolled. Nothing was hurt (hip was fine) but I had to call for help to get him off the floor as I explained to him over and over that he wasn't missing an important exam from his college days.

I could go into detail explaining how he recognizes people and then not in the same conversation, has a correct time line and then not in a ten minute window, sleeps so much more and that affects his stability and strength.....but all of the stories would only leave you shaking your head like we are and asking, "What changed so quickly?"

I had him at the hospital yesterday for an oncology check up and the doctor noted enough change in him (finally) that he wanted to admit him for testing. We agreed to the testing but brought Daddy home in the middle of the night instead of admitting him. We know very well that once he is admitted into the hospital for "observation" we will have a hard time getting him back out.

Testing: head CT, blood work, ammonia level, blood sugar, EKG, hidden infections, potassium changes, x-rays.......everything came back normal. There is some talk that it is minutely possible his pain patch is causing this. I disagree. I don't believe that after using the same medications for so long there would be a sudden change like this. I personally believe this has a lot to do with his last chemo treatment. I think that God made our bodies to cope and cope and cope until it can't right itself any longer and then shuts down to the basics as a re-boot (when possible).

Even still, his doctor is pushing chemo treatment. He told me yesterday before tests that if there was a brain lesion found then he would want to stall chemo for the purpose of aggressively radiating the brain lesion and then go back to the chemo regime. I just don't understand that. Daddy is a hospice patient afflicted with stage 4 cancer and has had a firm DNR order for many months. I understand that a physician is obligated to offer paths of choice but why can't he really address his quality of life. Daddy was so much better (going out for errands, joking around, sampling foods) before this last treatment. And yet this doctor treats me like I am the monster trying to rob Daddy by wanting the chemo stopped. If he would only say to Daddy that it is hurting him more than helping him then I know Daddy would listen.

grrrr.....I am venting. I want to fix this but my hands are respectfully tied until Daddy is completely in a state of not making his own decisions. It feels like I am slamming my head against a wall repeatedly.

But right now we are in the stall window of time. Daddy is still very strong physically and has times of being completely here. And when he is here he is totally here and almost doesn't understand our concerns. He doesn't completely accept 100% of what we say is happening. I wonder if this is like when he was sort of out of it from fatigue during rehab and will snap back to himself after a window of rest. I don't have definite information to give family that are not right here to see for themselves and that is hard.

Some are asking how I am doing. Really I am fine. My cousin is completely beside me and we are talking through all decisions together as she defers to my wishes in every situation. She tag teams with me when she is not working to give me some time to actually sleep. I am so grateful for her skills as a nurse to help me wade through all of the medical jargon and ridiculous red tape of a military hospital.

I am grateful for our wonderful hospice nurse that is so patient and encouraging to me. She has even given me her personal number to contact her with which I think is a huge gesture of trust and compassion on her part.

I am grateful for God standing with me in every second of the days and nights. You know that whisper of condemnation I battle all the time that tells me I should have done better with.....(fill in the blank with whatever)? Well when I found Daddy on the floor last week the first thing I heard in my heart was, "Julie this is not your fault. You can't watch him every second of every minute." And I believed it with no questioning. Wouldn't you agree that is a huge blessing of progress for me?

Ha! I am grateful for my new laptop so I can sit here next to Daddy while he sleeps and still be able to let you know what is going on.

I will keep you posted with information as I know more.

Even still, know that every day has purpose and destiny even when it looks clouded with what we don't expect. Have a blessed and wonderful day today and enjoy your times filled with purpose and blessing.

The #1 Rule Is Now Hand Washing....

Between old work buddies and extended family swinging by for visits the house has been hopping. It has been fun to have everyone around and it makes Daddy smile. But all the ins and outs has now taught me to be more of a strict dictator of sorts. The germs really could have come from anywhere. I could have even brought them home from the grocery store. But remembering the one group that whisked by with hugs and kisses.....and then sat on the couch hacking, sharing cough drops and commiserating about their autumn colds and bronchitis issues.... does make me wonder. It makes me wonder what in the world they were thinking. It makes me wonder why I never thought to demand that everyone who walks through the door needs to wash and use sanitizer before touching Daddy.
Shoulda' coulda' woulda' right?

Yesterday Daddy started in with a low grade fever and a sore throat. Phone calls, constant watch on my end, hospice visits; those things all determined last night that we should go to ER and get some lab work done just to be safe. 60 miles of driving and 5 hours of waiting for lab work and assessments got us back home at 2:30am. They decided that his white cell count is still in a good range. The chemo does compromise his immune system but the high cell count means that he can still fight off germs. Here is a big impressive medical word to learn: he is not neutropenic.

So at 3am I had Daddy settled in for the remainder of the night, cleaned up after the dogs and curled up on the couch with a small bowl of cereal for my hungry tummy. Sleep hit quick and merciful.

6am the dogs wanted out....again.

7am Daddy's peg tube site began leaking like crazy again. It is a subject I haven't broached here for the consideration of readers with shaky constitutions but suffice it to say it has caused a deal of concern and fast feet on my end with the unpredictable times it chooses to act up.

7:30am Lil' grandpa Jito dog started up with his altziemers confusion and barking. His little arthritic hips where stumbling him all over the floor and his enlarged heart was making his breathing whistle but he was so happy to see me. By that time I was really feeling the signs of needing sleep. As I tended to him I clearly had a picture in my head of what an excellent torture instrument he would be in a sleep deprivation study. The urge was really strong in me to mix him a yummy bowl of can food and a bottle of benadryl and just tell Daddy his body finally gave out. Sigh....I think the more sick Daddy gets the more he feels for that little fuzzball. It is like they are a representation of each other getting through their days.

Later....
It is now going on 5pm. We had a couple of visits today and that was nice. Hospice came by to check on us. Daddy is very tired. He still has a low grade fever and sore throat. I was kind of feeling stir crazy this morning and asked someone to come sit with him for a couple of hours but they were already tied up. It is okay. A nice long shower washed away much of the blahs and I will get out in the next couple of days.


Father God, even today I thank You. I thank You because I know You are here and each day is filled with Your purpose and destiny. I thank You because You smile and hold me through all of the patches that throw me by not fitting into my own expectations.

Nights and Days

Recent Things That Make Me Smile

Puddin' sent me a text recently that said this; "Guess what! My birthday is on 5th Sunday! That means I get to play drums on my birthday this year! and be at church!! :D "
Her excitement tickles me to no end.

And I am so excited for Pippin. For a couple of years now she has said, "Gosh it would be so fun to get a job at a coffee shop." Well, she just got hired on at a coffee shop down the road from our home. She is officially training to be a barista. That's my girl. Wish I could go in and watch her shine.

~~~~~

Here in Texas
Monday 10/4

Here in Texas I feel like we are in this...state of...transition of...I don't quite know what it is but I know God will get us through it.

Tomorrow Daddy will attempt another round of chemo at a 50% strength level. We did it once in July before he fell and there were side effects. But we figure that was with round after round built up in his system. Now that he has been "clean" for 2 months and he has the medi-port in his chest he feels obligated to try. The doctor says we will do 2 or 3 rounds over the next few weeks and then run a scan to see if the new lesion responds to treatment.

~~~~~

Tuesday 10/5

Our days have been good but the nights seem to creep up with a unique set of problems. As Daddy gains his strength and feel more sure footed he is wanting to assume more independence. The problem is that it doesn't always work out the way he plays it out in his mind before hand.

Last night proved to be a climax of night time trials. I stirred awake to the tap-clicking of little Tia pacing the wooden floor. Evidence of her upset tummy was all over the kitchen. But that didn't faze me at all because my immediate realization was what I saw in the den. Daddy's chair (he sleeps in it) was empty and the walker was next to it and no IV pole in sight. I found Daddy in the sun room getting ready for a cigarette in the dark. He had used that pole, the very same pole he had tripped and broke his hip with, to 'steady' his walk across the room. I was absolutely livid but knew enough to keep my mouth closed for fear of saying/doing something to hurt his heart.

I spent the next 2 hours on the couch praying for God's attitude and words while he settled into a comfortable sleep. I felt frustrated. I've bent over backwards to make things convenient and accessible for him. He knows he is not supposed to walk with that pole but he stubbornly did it anyway. I felt sabotaged.

"No Julie. This is not about you.", God said. "He is your daddy and he is worried about you taking care of yourself. In his mind, what else can he offer and provide you as a parent but a few hours of uninterrupted sleep. Getting up on his own is his way of trying to be a provider. He has been stripped of so much independence and freedom and in some way this is his offering to you."

In the morning we sat quietly together, neither broaching a topic because of the proverbial big elephant in the room between us. Finally I said, "Daddy I know that it has to be so hard for you to not be able to do so many things that you used to do. But please Daddy, please don't walk with that pump." He looked at me and I saw a flash of wanting to argue glint in his eyes. But then he softened and said okay with a sigh.

You know, we can all imagine what we would do and how we would feel in his shoes and I am sure he has thought all kinds of logic through himself over these last several months. But to actually be at these pinnacle points is all together different. After a few minutes he began talking to me about how hard it must be for me to have to clean up after old dogs and a sickly old man all the time and how much easier I had it caring for my husband and 2 teen girls.

Truly it is not often that he lets himself go down a pity type of path and I mentally gave him a "free pass card" before he even finished talking. I know it is only satan wanting to whisper to him that he is a useless waste of time.
With tears in my eyes I looked him square in the face and told him that it is my honor and privilege to be here. Anything and everything I do; whether it is cleaning up puppy potty, watching him sleep in his chair, laundry, medication management or just sitting and talking....it is ALL done 100% out of my love and it is my offering to give. It doesn't matter how anyone else views it.

With that the dam of emotions broke. He held out his arms and cried into my shoulder.

~~~~~

Wednesday 10/6

So far Daddy isn't showing and chemo effects. He has been dabbling more with eating and has been awake a fair amount of the day.
The nights have been broken for me every couple of hours with sick dogs or doing particulars for Daddy. Strangely I don't feel tired. God must be replenishing my sleep.

~~~~~

Friday 10/8

A couple of days ago I stepped out of the house to do a couple of short errands but ended up being longer than expected. The truck started to overheat. I flipped on the heater, rolled down the windows and pulled over to my cousin's house to let him do a quick service while I called Daddy to let him know. By the time I made it back home, Daddy was red faced and teary eyed meeting me at the door with an embrace. I think he was frustrated that his truck didn't 'take care' of me. I think he was worried for my safety since I took longer than expected. I think he is so used to having me around that he really felt the weight of being alone for three hours.

Yesterday I stepped out to finish my errands and it didn't take too long before the truck completely became unusable. I don't know what the small belt is called that broke but it snapped and shot through the fan belt which made the fan belt jump and suck up into the fan housing unit. The tension caused the time worn water pump to blow and then my steering locked up. Once again I called my cousin and he happened to be right around the corner. Daddy called a tow truck for me so we could put it in the shop over night.

Once again Daddy was worried and so apologetic that I had to deal with truck problems. Again he greeted me with big hugs and worry across his face. I laughed and told him that I thought it a grand adventure and saw God through the whole thing. I was on the main road when everything locked up but I was still able to pull around through traffic and into a parking lot around the corner with safety. I think that is really cool and I imagined God's hand holding the steering wheel with me because I was able to turn it and I never panicked. Plus having my cousin right around the corner where he happened to be running errands was more proof of not having to be alone. I told him stuff happens and we have a choice on how we react to it. I thought it was just spice to the day.

So here we are now at Friday night. It has been a full day of friend visits and birthday celebrations. We went out tonight to a burger joint and Daddy was able to eat part of a chicken burger. I did give him a bit of extra morphine before leaving the house to help the evening along but I think it was encouraging that he even wanted to go out and try to be with everyone.

When I look back over the things I have written I sometimes wonder if you tire of what I imagine can seem depressing circumstances. Thank you for letting me share my days with you. I pray that two things always get accomplished. One being that I can sort out my thoughts by journaling. The other important thing I pray is as I ramble on that you see God through our real circumstances. Our days don't always fall together like a little flowery storyboard but no matter what.....we are never alone.

I pray that you have an amazing destiny filled week.
Know that you are so important and loved.

Notebook Scribbles Part 2.....

This will bring you up to date with my notebook scribbles.
Let me just say here.....thank you for your support and care. God bless you.

~~~~~

Wednesday

Back in the beginning of Daddy’s diagnosis, the oncologist told us that there would be a high probability we would get to a higher knowledgeable level than the medical professionals around us concerning Daddy’s care. That warning was so acute today!

I am so looking forward to next week when Daddy’s gets his medi-port placed and the picc line taken out of his arm. Every week we have to be so careful in getting it cleaned and flushed. I am amazed at the varying standards of care given to the task.

Each nurse seems to complain about their predecessors handiwork as they unwrap Daddy’s arm. Then they subsequently do their own wrong things and it scares me. I sat there today watching the nurse touch Daddy’s line with gloves that had also scratched his nose. I also looked on as another chemo patient in an adjacent chair was allowed to flush his own line without prepping with an alcohol pad. He even told the nurse that his dressing was several days old and she didn’t lift a finger.

I wanted to jump up and scream “STOP! Nurses should know the basics in life threatening central line care.” But I have no credentials or title to backup what I know that can put a whole ward of nurses in their place. So instead I went out into the hallway and prayed.

Then I got mad at myself for not speaking up anyway when lives are at risk.

~~~~~

Friday Night

Rain poured today mixed with spurts of liquid sunshine. People ran in panic from covered area to covered area while I wanted to simply sit in the grass and feel the washing.
Am I crazy?

We were up early this morning to do a CT Scan. Poor Daddy tried to stomach what he could of the contrast but it is a cruel irony that an esophageal cancer patient has to drink to run a test and see if there is more cancer. Hopefully we won’t have to wait too long for the results.

The afternoon was slotted for a nurse home visit and physical therapy. Daddy is doing really well with his exercises. He even attempted to put some real weight on on his right side and take a couple of small shuffle steps today.

~~~~~

Saturday Night 9-25-2010

Every day Daddy has more and more strength. I actually felt confident enough to leave him alone for 2 ½ hours today without worry. He ended up sleeping peacefully the whole time I was gone and slept through the medications window I had set out for him….but that is okay. I got him back on schedule after setting the groceries on the counter and away from overly curious doggies.

~~~~~

Another Day

My uncle and aunt drove in today from Louisiana for a visit. The diversity of my heritage cracks me up. My Pacific Rim side wants to tease and laugh in pidgin slang while my NW comfort zone volleys for proper pronunciations. In Oregon I would say, “My aunt (with a tall “a” sound) and uncle are wonderful people.” Then there is my southern Louisiana side that could just as easily belt out, “My aint en uncle is great people ‘cause they come from good stock.”

I got busy and happy in the kitchen preparing for their arrival. I made a huge pot of chicken tortilla soup with all the side fixings: green onions, avocados, tomatoes, sour cream, olives and shredded cheese. Then I cooked up a batch of homemade tortilla chips for us to munch on. Yes I had fun. I love making people smile with a bit of kitchen magic. Of course as always I made way too much but everyone seems excited to eat it again tomorrow when our tummies beg for more food.

This is already turning out to be such a good visit. When they were here last (remember the gumbo?) it was the first time in 18 years that I’d had any contact with them and I was too overwhelmed with emotion to even write my thoughts down here.

Time can play such tricks on our minds and I was very guilty of having an onslaught of feelings I didn’t even know I had. I had to fight off waves of tears the whole time they were here.

Time can play such tricks on our minds and I was very guilty of having an onslaught of feelings I didn’t even know I had. I had to fight off waves of tears the whole time they were here.

Why? Well even though I knew 18 years ago that they loved me and I knew that like my father, they had horrible “keeping in contact” skills….after a few years of no phone calls or response acknowledgement of our family Christmas letters….those mind thoughts started to creep in.

I figured they were supporting my dad after my parents divorced. I thought that I was being punished for choosing to live with my mom instead of my dad. I imagined I was being snubbed for being like, looking like, talking like, and sounding like my mom (all of which I count as some of my finest privileges and qualities.).

But it turned out that they are simply bad communicators. In person they hugged me, marveled at how I’ve grown into such a woman, expressed pride in my family….all of my family, gratefulness for my time with Daddy and asked all kinds of loving questions about my whole family.
Their sincerity instantly broke down all of those ridiculous walls I had fashioned over time.

Then my aunt showed me her current craft project: a scrapbook of the important people in their hearts. My brother and I were dotted through various memory scenes and there were 2 full pages devoted to just us and our growing up milestones.
All that time I thought we were so far from their minds and there we were affixed in their heart treasure book.

Father God, please forgive my small self-centered mind and help me to focus on Your viewpoint of things, of people, of situations.

~~~~~

While on the subject of heart matters and perceptions I want to bring something up. In the past I have occasionally made comment that it is not always so easy to get along with everyone here. TI want you to know that things seem very different now. Basically I think that when I came the first time in January I was a new novelty. It sounds funny to say it that way but it’s the only analogy I can think of. My second trip over the summer was a huge turning point that represented the idea that Daddy’s health was getting worse and he couldn’t be alone. That fact sent many into a panic and I became the focal point of fears and aggression. One even said to me that even though we are family it doesn’t mean that we are like minded and we must work at getting along until this is all over with for Daddy’s sake.

This trip has brought on a whole new set of emotions. Even though I was gone for a short three weeks, it was enough time for people to try and fill my shoes. I don’t mean that smug in any way. It is just that when I walked off the plane I was greeted with warmth and tenderness and gratefulness. That tone hasn’t changed at all. I don’t feel like the conversation changes or stalls when I enter the room. I don’t detect anything fake or forced and the hugs are real and lingering. Those things didn’t have to change for me to be here but I am so grateful that they did.

~~~~~

Thursday Sept. 30th

We successfully got through Daddy’s medi-port procedure yesterday. Gosh it is so nice to have that line out of his arm. While he was in procedure, I went upstairs to talk with his oncology doctor and share some insight with him. I wanted him to know that Daddy has thoughts and concerns beyond what they doctor hears in the office. Those visits go by so quick and it is easy to get passed over.

I wanted him to know that 2 major things happen. The first is that because Daddy just retired from the medical profession, he knows first hand that the easy going patient gets more care. It is sad but it is a fact. The second thing is that with 26 years of military training under his belt it is so easy to see that rank on the doctor’s collar and only say yes sir to all questions asked. I told him that there is going to come a time when as a doctor he will need to guide conversation with my dad. I asked him to look beyond the initial yes sir answer and really seek his desires for treatment. Eventually he may want to quit treatment and he will need his doctor to say that choosing his quality of life over length of life is an ok thing to do.

He was quick to want to leave the conversation with me but he promised he understood.
At least I know I voiced what I felt needed to be said.

We also picked up the CT results while at the hospital. We haven’t talked with the doctor about them yet but did look it over ourselves and again with our hospice nurse in the afternoon.
It shows that in the 2 months of not having treatment the masses we knew of have grown only a little. But there are numerous new spots in the lobes of his liver and other areas that have been labeled as a watch.

Daddy and I talked about it all today and considered the next steps to take. He would like to try the treatment at 50% and see if he gets an onslaught of side effects. He did do it once before at 50% but it was with several treatments built up in his system so maybe this time will be different. He did tell me that he doesn’t want to drag things out and that he has already had more time than he had hoped for.

What will happen from here? Only God knows. And we trust that He will take care of everything with grace and mercy and even miracles.

Short Story Here....

I am alive and all is well I promise!
I know you must be really worried with a whole month gone by and nay a word from me. Believe me I have been crawling the walls with wanting get on here and post.
Right after I arrived back in San Antonio my dad's computer crashed and it is still not fixed. Ugh! I am writing my thoughts in a notepad but.......oh my gosh it is so not the same! I hope to share it all with you but I confess it will take a bit to transpose it all.

So how am I here tonight? Well my cousin brought me over her laptop and cell phone for the night so I could check my mail and do some internet shopping for Daddy. Now if time could just stand still so I could tell you everything right? But that won't work so.......

Super Short Story here......
Daddy is doing so amazingly well with rehab and we are finishing up the last of the therapy home visits. We have had tons of doctor appointments on the calendar and then we crash on the couch at the end of each day with a sigh. We did a CT scan last Friday to see if there has been progression with the cancer but we don't know any results yet. We signed on with hospice last week so that we could get some much needed help and support and it has already proven to be a good decision.

In other news my mom is finally free of that vac pac she carried around for almost 3 months (it seems) to heal from surgery. Yahoo and praise God!
Hubby and girls are doing great. Puddin is having a ton of fun with her junior year of school and I am so very glad. Pippin is in the process of being hired on at a coffee shop down the road from home and she is thrilled. Hubby is working hard at work and is doing a great job at keeping the house and persons in it in harmony.

I don't know when I will be able to share more but I hope it will be soon.
I will be transposing all of my messy handwriting notebooks writings here and after the above quick update you may find it tedious and redundant. To that all I can say is the promise God gives that to everything there is a season. :-)

Thank you so much for your encouragement and prayers.
I konw there are those who are praying and reading here that don't leave a comment and that is totally fine. I am grateful for you and I understand for I am a silent reader to many also. But may I just say here specifically to Janine ....you are an amazing joy. Thank you for being such a support to me.

God bless your week with purpose and destiny that makes you breathe with thankfulness for knowing you are so very much loved and valued.

Waiting To Exhale....

It has been such a long weekend.
It turned out that Daddy had a bad reaction as the anesthesia began wearing off. Apparently there are times when the flood of anesthesia that is built up in a person's system can cause a temporary form of confusion and disorientation.

His doctors held back a little bit on his pain medication thinking that it would help him in his clarity and get passed the anesthetic hump. But in retrospect I think holding back the pain meds put him into a state of delirium. He was in so much pain that he became unable to communicate and babbled incoherently. Severe dementia set in quickly.

Daddy became severely agitated. He was combative and hostile and didn't know who I was. We took turns sitting vigil over him to try and bring comfort and safety. He was so panicked that he had to be restrained after pulling tubes out and then even with me right next to him he pulled out his feeding tube from his stomach.

While all of that was going on we couldn't get him out of bed and post operative pneumonia set in. His resting heart rate was 130 all weekend and he was without nutrition since he first fell and I had disconnected him last Tuesday night.

Through it all I tried desperately hard to focus on each moment and not think of anything else but last night was a breaking point for me.
Daddy had slowly calmed down throughout the day with round the clock morphine and 2 units of blood being administered to a more restful sleep and then about 8pm he open his eyes for a moment and I could tell he actually knew who I was. His chin trembled as he whispered "pain" and pointed to his j-tube site on his stomach. His nurse was right there with another dose of merciful medication and he drifted off to sleep.

As I held his hand other things transpired around us that still makes me sick to my stomach. The charge nurse and room nurse were working over Daddy's bedside and conversing with one another about life beyond work. One looked at the other and with a loud booming voice said, "Well you know my philosophy. You work hard, life is rough and then you die." Oh my goodness! I know and understand it is easy to get callous and forget to be professional at times but wow that was so inappropriate. Here they were leaning over a man diagnosed with stage 4b cancer and a broken hip and they are making sarcastic ignorant comments about life.

I was too horrified to even confront the situation. I just kept looking at Daddy's hand as I blinked back tears. Then later through a phone conversation I felt beat up and chastised after being told that I had held back incorrectly an important medication that I thought Daddy was allergic to.

I know it was wrong and lies were seeping in with the mounting fatigue but I couldn't fight back the thoughts that I made a mistake with the medication and it could mean the difference in the pneumonia winning, that he had pulled out his tube on my watch and was on day 4 of not having a drop of nutrition because I didn't catch him fast enough, that he fell in my care in the first place.

I couldn't fight anymore. The doctor had ordered an aid to sit with Daddy for the night, so I kissed his forehead and made my way to the car before breaking down. I cried, I hyperventilated, I screamed and beat on the steering wheel till I could no longer feel my hands, I cried until sound no longer came out anymore and I was spent before I was able to drive home. Then a fresh wave hit me in the driveway and I started all over again. After a fitful few hours of sleep I got myself ready for the day and headed back to the hospital.

Then the miracle happened. Daddy opened his eyes and smiled at me. Recognition and relief washed over him as clear as if I were reading the words tattooed on him in black and white. Then he started crying and whispering "I love you so much" over and over again. Throughout the day he carried on complete conversations with me and others who came by. I re-oriented his memory and hung pictures of family by his bedside. He participated in physical therapy, used his spectrometer, and even ate some applesauce.

His feeding tube was replaced today and we were able to start up his nutrition right away.
When I left tonight he was too weak to hold anything but he could speak clear and strong for anything he needed. He felt it very important to stress that I must not change my plans in going back for the wedding. He was adamant that the wedding is too important to miss and oh how I love him for that. Even in his pain and nightmare weekend he is still thinking of what is important to others.
I was able to pray with him tonight and he heard and agreed with every ounce of it before telling me to get a good night sleep.

I am very much looking forward to seeing him even better tomorrow after a night of sleep.....
and then maybe I can exhale.

Compression Fracture....

Tuesday at 11pm I ran through all of my normal bed time things: medications for the dogs and one last romp outside. (Conguito killed another cat that night. Goodness I wish those Ferrel cats would stay out of the yard. He turns into such a possessed animal when a cat is in his cross hairs. It's awful.) Then I did Daddy's night medication cocktail and set up his morning dose so I wouldn't have to use my brain first thing in the morning. I also set his feeding pump to run the night. Took out the trash and loaded the dish washer. Shut off the tv and flipped light switches. Then I stood in the kitchen so that lil' grandpa Jito could focus on my feet until he fell asleep. (Because he has Alzheimer's he gets disoriented and scared and that makes him pace and bark incessantly. You may think it is an awful thing to say but between that and his congestive heart condition I have been so tempted to slip 20 Benadryl into his medication plate. But it is so not my place to make a decision like that.)

1am my head hit the pillow. That is how my evenings typically go and I fall asleep without much effort at all.

3:15am I awoke to a crash and Daddy yelling for me. He had gotten tripped over his own feet while getting out of his recliner and couldn't move. After untangling the pump from around his body and moving furniture around we managed to get him standing up but he couldn't put any weight at all in his right leg. It took some firm suggestions on my part but he finally relented and let me call for an ambulance.

4 hours went by in ER and loads of doctors in and out of his room. We did x-rays and found he has a compression fracture in the neck of his femur. Then they sent in an orthopedic oncologist in. It never occurred to me that there would be a specialty like that but I think it is an amazing thing of God that even though it is a rare specialty they would have a doctor like that right at our hospital.

That doctor's concern was that the cancer had settled into the bone. A compression fracture in that area happening from a simple trip fall to the floor is a pretty difficult thing to accomplish and he said the bone in that joint looked like powdered chalk in the x-rays. So we set up for a detailed PET scan and MRI to figure if the cancer has spread beyond the 4 basic points we have been concentrating on. We spent all day processing that thought and wrapping our brains around it. The other thing we did was work feverishly on managing Daddy's pain level. He was beside himself until about 7pm before his body truly started obeying the narcotics.

9:30pm the doctor called Daddy's room with the test results from the PET scan. Praise God! It is not cancer in the hip bone! So it must be that these months of chemo treatment has caused stress and degredation in his bones. Other tests will tell us if there is anything else to worry about.

10pm I left the hospital, took my cousin home, played with the 5 dogs and dispensed evening meds and then hit my pillow at midnight. I woke at 7 this morning in the exact same position.

When I go in this morning I am hoping to have the rest of the results and more of a game plan in mind. The last I heard they were talking about a partial hip replacement tomorrow afternoon.

I have to confess that I was very nervous how things were going to play out yesterday. For Daddy, I knew the doctors would care well for him. My concern lay in being kept in the loop. Even though I am living here and being his care provider, I am not his point of contact nor do I have power of attorney. Daddy set things up months ago for my cousin and step brother both to have those in their names. It is logical. They are both nurses and they live here. Now that I am here I know Daddy doesn't want to hurt any one's feelings and push them away by changing things into my name.

Honestly I worried about being patronized and told to go home and rest. I worried that the doctors would tell me I am not privileged to be in counsel. I worried that big heavy fire security doors with the "authorized personal only" sign would close in my face with me on the wrong side. I could handle the trauma of the fall but I couldn't handle the thought of being shut out.

None of that nature happened though and I am so grateful.
Thank you God for Your grace and mercy.

It's interesting. On Tuesday during the day Daddy got a spurt of energy at home and was moving around like I haven't seen him move in months. He all of a sudden was determined to do some things in his office. He did a stack of birthday cards and bill paying and organizing. While I was watching him I was reminded for some reason of the nesting instinct that a pregnant woman gets before labor sets in. His was on a mission and nothing could stop him. Now I understand why. While I know it certainly wasn't God's will for Daddy to have a broken hip, He did make it so that he didn't lay in that hospital bed frustrated over things not tended to.

Time for me to get going to the hospital.
Thank you for your prayers and encouragement.
I am so grateful for you!
Be blessed immensely!

Emotions Can't Always Be Trusted....

(Our backyard. Texas has never had such green grass but the rain has been a blessing in many ways.)

A few days ago we were swamped with a rain front and I simply couldn't help myself. While all the fuzzy dogs cowered inside, I stood outside in the rain and closed my eyes to let the cool water washed over meas the billions of drops fell in sheets at a time. My heartbeat slowed and my breathing fell into soft rhythm. It was a welcomed relief to the storms raging in my heart.
I doubt I will be able to adequately convey here the fronts that have been brewing inside me but I promise to be open and as painfully transparent as possible.

While I know that I am not alone: God is ever with me, friends and family back home are praying for me, and I have seen time and again that God creates encounters of prayer and encouragement whenever I go; the feeling of being alone can still feel extremely magnified at times.

Yes there is family here but it isn't the same. Most are busy with living and too scared to look at Daddy's declining health so they don't come over at all. One that does come maybe once a week does so with "baggage" and "borrowing needs". Then as I get a hug goodbye I am given a pat on the cheek and with one single breath proclaims, "You are so easy to read. I see you have something on your mind and I sure would love to know what it is. Well have a good week." And the door closes.
It is okay. It is all the reach out that person can do.

A couple of others have encouraged me for months to learn the layout of the road system (which I must say is the dumbest most confusing road layout I have ever driven. There is no logic or pattern to get anywhere...at all) but then as I have successfully learned how to navigate the basics they have been hurt and offended that I can be self sufficient. They feel un-needed and there is an underlying unspoken panic that says I am replacing them.
It is okay. Being providers is how they are able to deal with their levels of cope and grief.

Daddy is a quiet enabler. For example, I have learned that when we are 30 minutes late in being picked up for a doctor appointment he doesn't say anything. He smiles and makes small talk and then creates excuses at the check in counter about the imaginary traffic we encountered along the way. I asked him recently why he doesn't address the issue. His reply was that he didn't want anyone to feel bad or think that they are not important anymore. While I could reason and talk my way around that type of thinking pretty easily, the bottom line is that it is his choice and he doesn't want to create pain for anyone.

So I will respect that and do nothing. These patterns were set into play long before I arrived and it is not for me to create tension. (And I'd like to acknowledge here that I am not condemning or putting anyone down. I am simply trying to explain the technicalities of living in a place not of my own. )

It has taken me a while to come to this conclusion though. As with most things, it takes me a while to muddle through and figure out the direction God wants me to point in. That is partly because the spinning static in my mind makes too much noise for me to remember to stop and hear and partly also because I dig my heels in the ground and want to argue.

As the lives of my growing children are changing and adapting to me not being at home, as daily things happen to my husband, family, and friends that I can never have as a personal memory; I have wanted to stomp my feet and shake my finger in protest at what I have considered to be the injustice here. "Can you even consider what I have put on hold and given up to be here and help? Do you not see and understand even a portion of the sacrifice?"

And then God reminded me that somewhere along the way I switched my dependence to those around me for my security, my well being and my identity instead of focusing on Him to be my all sufficiency. Having my family and friends around as encouragement in daily living is a fringe benefit but He is supposed to be my all in all.

Yes I miss the beauty and comforts of home. I miss the corny jokes of my girls and their friends that remind me to look beyond the obvious and take joy in the simplest of things. I miss seeing that look in my husband's eyes that says I am beautiful. I miss my church home. Every week that I go to my sister's church I purpose to reach out and introduce myself to people even though my information cards have never been answered in all the time I have been here and it reminds me acutely how special my church at home is to strive to make sure no one feels alone. I miss my dog. Some would say that is ridiculous, especially when I am surrounded by 5 here, but God put that lil' guy in my life to answer a need and heal something in my heart that I thought could never be healed. In so doing, I am irrevocably attached to him and want nothing more than to curl up on the floor with him and not let go. I miss being able to be in the same room with my mom and laugh so hard over the simplest thing that I can't breathe.

But God has put me here for now for a reason and that has to remain my focus. When I close my eyes I can see His angels of encouragement holding up my arms and He is right next to me whispering in my ear that I am not alone.

So, those are the main things that I have been trying to come to terms with. I have sat down so many times to try and write it out but ended up shaking my head futilely to a blank screen. I realized that I was even not wanting to talk on the phone with calls from home because I couldn't explain and I felt empty. Now I am pulling out of it and I am so grateful.

I should update you on other things as well.

* Daddy started chemo on Wednesday. For this round we chose to do the IV drip only and dose it at 50%. This form of chemo builds in his system and hangs on for a long time. Now that it is day 4 he is beginning to feel the effects. The hot zone on the inside of his mouth has returned and he is quite fatigued but that is all. While we would love for there to be no symptoms at all, we are grateful that these are easy to manage and pray that the other effects stay away.

* I talked with my mom a couple of nights ago and she is still having a time of it after her surgery. Her incision is still infected and refuses to close even though it has been a month. It turns out that her surgeon gave incorrect care instructions for healing and now they are going to have to re-open her incision to adequately get rid of the infection and promote healing. Goodness how many times I have shouted gratefulness in my heart that her longtime childhood friend is there visiting and helps her to laugh away the frustrations.

* In three weeks I will be flying out to our eldest daughter's wedding and then staying in Portland for 3 weeks. Yes I am very anxious.



Thank you for your prayers and encouragement. Thank you for "listening" and understanding.
I pray for you to have a blessed and destiny filled week and that you realize just how important and cherished you are.