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.
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.
~~~~~
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!
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