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.

My Paper Thoughts Without a Computer....

My cousin blessed me with letting me keep her laptop over night again. Here is the the first few pages from my notebook. On paper I don't feel quite so organised with my thoughts but I figured if I transposed AND sorted I would never get anything posted. Please bear with me.

Oh and by the way, if you want to send me emails, I can open short emails with my cell phone.

Let's Begin With My Amazing Family...

(These shots were taken the morning I had to fly back here.)

I've been here 4 days now and everything is a blur. I know the importance of being here but at the same time I miss my family so very much. I have to make a conscious and constant decision to focus on the moment and the task instead of trying to plan out a time frame and outcome beyond what is in front of me.

~~~~~

Let's catch up on the fun I had while home for a short 3 weeks. I already shared about the wedding and our amazing grandchildren.

The following week Hubby and Puddin' ran together in the infamous Hood 2 Coast relay. They did so well and while I tease as to why anyone would be crazy enough to run even a single mile; I actually admire them for their diligence and determination. As their blisters and muscles heal from the torture they are already putting together the roster for next year's team.

The days flew by with visiting family and friends, lunch dates and dinner outings, school shopping, house cleaning and movies on the couch.I cooked up big batches of chili, spaghetti, ham and potato soup, teriyaki chicken and also chicken and broccoli casserole. Then I froze everything into individual servings so my family could cuddle up with a bowl of my love after a big day.

One of the highlights of the trip was when Puddin' passed her drivers permit test. She and I had so much fun that first day driving our imaginary city streets through the sparsely filled parking lot. I know it is crazy to everyone else but I have loved teaching all of our children how to drive. I am going to miss being able to do that with her.

~~~~~

Friday Sept. 17

There is a storm front that has blown in from the gulf. As always

I love the weather....but the dogs are in my lap and on top of each other trying to stay safe from the dreaded thunder.

Daddy is sleeping a lot today. I am so amazed at the progress he has made in such a short time. His mentation is so much better now and he is aware of what he does and says. He still dreams though. we smile big and encouraging with each other when he begins a conversation with me and then says, "never mind. I am dreaming again." Or I tell him he is dreaming and he sighs contentedly knowing I will keep him safe and then he laughs at himself.

Physical therapy and occupational therapy come by 3 & 2 times a week respectively. Wow! He is getting around so well with his walker....sometimes too well. This morning he decided he wanted to try something to eat and I found him in the pantry trying to carry a cereal box under his arm while keeping both hands on his walker. Sigh....it is a tricky line I walk to balance his safety and care without making his mental Independence obsolete.

We had follow up appointments earlier this week with his oncologist and then the orthopedic surgeon. The surgeon is pleased with his healing and the x-rays look great. The only problem is that Daddy's body is choosing to be in the rare 3% of cases where the body wants to lay and extra layer of bone calcium along the incision line. Basically it causes more pain than normal. The doctor says he will keep an eye on things but that as long as he is mobile it shouldn't be too much of an issue. If it progresses drastically then he said they could fix it with surgery. HA! No way are we going through all that again if we can help it. So pray I will.

The oncologist wants to do some lab work and a full CT scan to check for progression of cancer before starting back up on treatment. I’ve been talking with Daddy about the idea of not doing treatment anymore. It is such a hard topic to discuss but he is always faithful to be open and frank about answering my questions. The chemo treatments bring on so many hard side effects with no long term resolution and I can’t imagine him trying to deal with side effects and a feeding pump and a walker with a healing hip. There comes a time when we need to begin asking about quality of life. I am not saying he should quit treatments. I just want him to know that we all support all of his decisions.

~~~~~~

Later

I’ve been sleeping on the couch so I can help Daddy at night. We are adamant that he not use the feeding pump while trying to walk. The reasoning is that if he tripped and broke his hip with 2 good legs while holing that IV pole then he is in more danger of tripping with a sore leg. So, I wake up 4-7 times a night to help him disconnect for various reasons. If I am not right there to supervise then he would either try to hobble around and disconnect himself in the dark or drag the pump behind him. My cousins have both offered to take a turn staying on the couch so I can have a night of uninterrupted sleep.

~~~~~

Sept. 18

It is Saturday morning and I am sitting here on the couch. The Psalms are playing on the mp3 player while Daddy sleeps with a smile on his face. I love these mornings when it’s quiet like this. Before Daddy broke his hip he would blare the t.v. 24 hours a day. Now in the mornings he is beginning to enjoy listening to his Bible audios along with our morning devotions. Then whenever he sits in the sun room to smoke he lets me read to him various books I happen to get my hands on. Before he fell we were reading a book on Heaven by Randy Alcorn. Now we are reading On The Anvil by Max Lucado. As I was packing to come I grabbed an old paperback on my shelf called Hinds Feet On High Places by Hannah Hurnard. It has been years since I have read it but I think he would enjoy the journey it symbolizes. Now I just have to dig up the character voices I used to use when reading to the girls so I can adequately portray the story picture.

~~~~~

Oh my! I just glanced back through what I have written and realized I never shared an important event that happened while back in Portland. Pippin had her teeth fixed by the God. It was like a Holy Spirit orthodontic visit. I know that sounds like a bold statement to make. Let me explain.

Aesthetically her smile is beautiful but for about 6 years now she has been in constant discomfort with her jaw alignment and positioning of her back teeth. From her incisors back on both sides none of her teeth could touch. There was such a gap that she could stick her tongue out those holes and she had to chew her food using only her front teeth. Her jaw was making the popping and locking signs of advancing TMJ. We counseled with 2 dentists and 2 orthodontists to lay out a plan of attack. We have just been waiting for our funds to be in a more fluid state of ability so we could actually pay the huge bills and help her before too much damage was done.

The miracle came while she was at youth camp. The youth had begun a time of spontaneous unplanned worship. One youth started messing around on the piano and pretty soon another picked up the guitar while another began tapping away on the drums and others started to sing. Of all the things they could have been doing with their free time I think it is amazing that they chose to simply sit with God.

Pippin said she wasn’t even praying for her teeth at that time. She was just sitting on the floor completely engrossed in worship. All of a sudden there was a loud pop and a shift….no pain. She felt all around in her mouth with her tongue and then with her fingers and then started to jump up and down when she realized everything was different.

I know it sounds hard to believe. I called our orthodontist so we could get new x-rays done and see if anything looked different. Sadly, with everyone doing their last minute “get ready for school rush” there were no openings for us to go in. But really that doesn’t matter. Even my untrained eye can see that there is a difference in her smile. Her teeth touch….all of them. Her jaw doesn’t pop and she can close her mouth without pushing on the sides with her hands. She even had a small lisp for the first few days as she adjusted to the different way air passed through her mouth and teeth.

God is so very amazing!



~~~~~

Saturday night 10:27pm

Here I sit in my room ready to read and rest for the night. My cousin came in the door with a chai in hand for me and her A Bag on her shoulder.

Daddy has been so in and out of sleep the past couple of days that he forgot she was coming to stay the night. Before she arrived he looked at me and said; “Why is your cousin coming by so late?”
Me: “Just so I can catch up on a bit of sleep.”
Daddy: “Did you tell her you aren’t sleeping because you are so stubborn and insist on being in the room with me?”
Me: “I just love you Daddy and want to keep you safe.”
Daddy: Yeah I know and you are stubborn too.
Me: “Ok yes I am stubborn but I want to keep you safe.” (In my head I heard ‘yeah because you did such a good job keeping him so safe that he broke his hip’….and I had to fight back that stupid thought before continuing.) “Daddy when you are awake you are great and totally aware of what you are doing. But when you are sleeping you don’t always realize what you are doing. It is not a bad thing. We just love you. Please understand.”
Daddy then softened and said, “yeah I know. I do understand and I love you too Honey.”

~~~~~

Monday

It was a rough night for Daddy. He was up and down a lot. I have been keeping a medical journal and writing down everything he does. Now I am wondering if he is beginning to have prostate problems. Something to talk with the doctor about today.

Then in the early morning I realized his feeding pump malfunctioned during the night and consequently his peg tubing was clogged. I worked at it for 2 hours alternating Coca Cola and then using a syringe like a push and pull plunger. When the clog blew I praised God and then started to cry.

Those lying little voices had been whispering untruths in my mind while I worked and they were eroding away my confidence and purpose for being here. Then as I read our morning devotion it was like it was written just for me. It as all about pushing through and standing on the truths I know in my heart and ignoring those discouraging lies.

~~~~~

A Typical Week

Monday: Oncology doctor in the morning. Family practitioner in the afternoon. Plan on each appointment taking at least 3 hours.
Evening is slated for hospice consultation.

Tuesday: Morning is orthopedic appointment for knee synthetic injection.
Bath aide in the afternoon.
Hospice nurse evaluation in the afternoon and a physical therapy home visit.

Wednesday: Morning is medi-port evaluation and picc line dressing change slated for at least 3 hours.
Afternoon is hospice chaplain visit.

Thursday: Morning is hospice social worker visit.
Afternoon is occupational therapy and physical therapy home visits.

Friday: CT Scan in the morning. Slate at least 3 hours.
Afternoon is physical therapy.

Saturday: Occupation therapy home visit.

Sunday: company comes into town.


As you can see, more and more appointments are on the calendar. We are in the process of setting up hospice this week. We have learned that even though Daddy is still taking palliative chemo we can receive hospice support because he is being treated at a base hospital. I don’t personally understand why that would make a difference but I am grateful for the help.

All of the hospice visits have happened quickly. One phone call and everything was activated. Tons of paperwork needed signing from each facet of the field and then there were the strange feelings to deal with. I carefully but purposefully voiced my concerns to our hospice nurse. I can imagine that usually hospice clients are not as alert or healthy as Daddy is and that can make it easy to forget to include him in conversations as the client. All of the different representatives that came by tended to refer to me only for answers and talk over Daddy like he wasn’t even in the room. Even though he is familiar with how everything works after my step mom battled cancer and died almost 3 years ago, this is still a scary new step to take and emotions are in a high wave of adjustment.

I explained all of that and asked that as she builds a relationship with us that she make effort to keep Daddy in the conversations and decisions as much as possible. She really does appear to be a compassionate person and I think that she is going to be a wonderful addition to our family team.

Ok I will stop here for the moment. There is more to share but I must have mercy on what you have time for.

God bless you in all that you do!

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.