Friday, October 29, 2010

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

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)

- 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.

Thursday, October 28, 2010

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.

Wednesday, October 27, 2010

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.

Saturday, October 23, 2010


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?

Wednesday, October 20, 2010

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.

Monday, October 18, 2010

Would You Believe It's Been 21 Years?....

Thursday, October 14, was like any other day for me for the most part. I did things around the house and took care of Daddy. Tia needed a trip to the vet clinic and that gave me a new round of doggie meds to add to the daily routine. I made a quick dinner so that my sister and niece could come over for a visit. A few times I thought about the fact that it was our wedding anniversary but told myself to focus on the task at hand. Hubby sent me nice text messages throughout the day and recorded a goofy sing song video on his phone for me and that gave me a good laugh.

As I closed up the house for the night I heard my phone going off with a call from Hubby but my hands were full with syringes and tubes so I let it ring. Then the house phone rang and I thought, " bless his heart he is persistent today."

He said, "Hi honey. I just wanted to talk to you one more time for real before the day is over. I have a problem though and was wondering if you could help me with it. See, I think every married couple should kiss at least once on their anniversary. Would you please open the door for me and let me in?"

Yes for real! He had secretly made plans a month ago to surprise me. I was in shock! God bless him. He has set up surprises for me many times in all our years together and I have feigned the wool being pulled over my eyes because it was the effort that was special. But wow! This is what it feels like to really be surprised.

Hubby had even made arrangements for my cousins to stay with Daddy so we could get away. He told me to pack a bag because he had a road trip in mind and reservations waiting for us. He knew I had been missing the breeze and serenity of the beach so this was our hotel room view in Corpus Christi.

Oh my goodness what a relaxing time. I let my hair down and felt the tension roll off and away from my shoulders as I sat listening to the warm waters of the Gulf and did some beach combing for seashell treasures.

We spent the next day driving around and laughing at ourselves getting lost numerous times as we wound around the Gulf islands of Mustang and Arnasas. All too soon it was time to head back into San Antonio. My cousins insisted that we not rush home so we spent the following evening walking the River Walk downtown. We rode a tour boat and threw snacks to the resident ducks. Then we grabbed a dinner table next to the water and feasted on the local cuisine.

It was such a wonderful weekend, a weekend that I will treasure for a long time.
Yesterday I took Hubby to the airport and we had to say an all too quick goodbye. All the same, I feel rejuvenated and more focused on the tasks at hand. I am so grateful for the blessings of each day.

And guess what? I am typing this on my brand new laptop that Hubby brought for me!
Yes I am one spoiled lady.

Tuesday, October 12, 2010

Me Time and God Time....

My cousin came over last night to give me a much needed break. I never thought I would get to a point where I would call and ask for time off of giving Daddy care but the sleep deprivation thing was really getting to me.

I used the time to run a few errands before stores closed and then tended to a quick birthday craft project before taking a muscle relaxant and snuggling up to my pillow. God is so cool! It hadn't rained here in a while but as my head hit the pillow a thunderstorm rolled through. Was it solely for the purpose of giving me a comfort sound to drift off to sleep with? No, but I sure did enjoy it.

After a restful sleep I sprang up this morning and went shopping. As you can see from the picture of my fingers and goofy lil' toes above, I ended up at the spa for a tipped manicure and pedicure. I tried out the pedicure with the paraffin soak and wow oh wow it was nice. It was my second ever pedicure and I have to say I am really liking the special treat. I never used to like having my feet touched before. Not even my husband could touch my feet without panicked threats leaving my lips. I think it was because I had serious control and trust issues. I am learning with God's help that I don't have to be that way.
Hmmm did my round about thoughts actually just hint to the idea that with God's help I can now enjoy a pedicure? That is too funny.

When I got home, my cousin had been dealing with trying to unplug Daddy's peg tube again. Daddy had gotten disconnected earlier in the day and forgot to flush with water. She worked on it for hours and I worked on it into the evening with no progress. As you may remember, if we can't get it undone the solution is going to the hospital for a replacement procedure. Yuck!

Poor Daddy was getting so stressed and frustrated. Finally I looked at him and said, "I have been praying in my head but we need to pray out loud." I grabbed his hand and prayed, "God You know the hassles we are dealing with. Please fix this tube problem for us." Pretty soon my cousin gave it one more try and BAM! the plug dissipated!

We whooped and hollered around the house. I praised God and Daddy trembled with gratefulness as I hugged him.

I think he needed that. I have been noticing lately a shift in his thinking at being more depressed than positive. I am not saying that God plugged his tube in the first place. Stuff happens and God fixes it. What I am saying is that he got a hugging reminder tonight that...
God is still here.
He still listens.
He still cares.

I just had to share that with you before doing my evening chores.
Thank you for your encouragements, your comments, your supportive prayers and friendship.
God bless you this week with the hug of knowing you are so very important.

Sunday, October 10, 2010

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.

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.

Friday, October 8, 2010

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 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.