Thursday, September 30, 2010

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.



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.

1 comment:

  1. Hi my sweet Julie ~
    As always, I am so blessed to be able to peek into your life and stand in awe at how you have and continue to handle things. You are so honest with your humanness ~ a quality that I have seen few have or even be willing to share with such grace and mercy. WOW! You have given your daddy all he could ever have hoped for, and more, I’m sure. I know he smiles out loud and in his heart for all the love and more love and more love you have so graciously shared with him. And I know you would do it again in a heart beat. What a pure blessing. But, can you just imagine how much more our Father God must be smiling. Close your eyes and catch just a glimpse………….Ahhhhhhhhhhhhhhhhhh. Good, huh?
    I could just picture you wanting to sit in the rain while everyone else wanted to run for cover. Sweet rain. Let it pour from heaven! Father wash this new man clean, in the blood of Jesus’ rain………We wrote a song called Sweet rain. I’ll have to let you listen to it some time. Love Cuzin Wen


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