Monday's Update
First of all, thanks to those who are reading these updates, and sorry for not posting daily. Some days I have been unmotivated or too tired. I am still doing my own note-taking and cliff notes journaling, and I'll try and post when I can.
Dad:
Today has been a very difficult day. I've seen already that each day holds many signs of hope and despair, moments of optimism and fear. Today was maybe the most quintessential example of that thus far. Dad was up early today and seemed as adventurous as he has in days. He ventured across the street on his scooter to one of town's little diners, his first time to go that far to my knowledge. Shortly after he disappeared out the door for his morning trip to the building's side porch (my folks live in a 5-story apartment complex mostly for seniors), he called me in the apartment using the intercom and asked me for $10!?! He zoomed across the street and boldly ordered a biscuit and gravy and drank a chocolate milk. Unfortunately, it apparently all came up just as he finished, and he returned a bit soiled. We are thankful for all our friends at the restaurant, who cleaned him up and comped his meager meal. (One knows everyone in small towns like ours).
However, upon returning, he was as weak and unsteady walking across the room as I have seen him, and it took the help of both Mom and me to just get him the few feet from his chair in the living room to his bed. He was so timid and almost afraid with each step, thrusting his butt backwards and reaching his arms forward, like a child afraid to jump into a pool. Mom wonders if it is more of an emotional reaction to the embarrassment of throwing up his meal at his local coffee haunt in front of some of his friends.
But this evening has been most discouraging. He is almost completely out of sorts and has suddenly taken to wetting the bed, showing no interest in eating, and not being cooperative with some of his treatment because all he wants to do is sleep. Just now, I put some "paper shorts" on Dad to help in case other accidents, yet another example of the uncanny way our roles have reversed from when I was a baby.
Then again, during his final bedtime prep, he definitely said some lucid things, and he remembered what he had for breakfast when I asked (and he remembered throwing it up). It is really hit and miss, but I still think generally he knows what is going on. I imagine his cloudy-headedness is due to the tumors, which the radiation can only stave off for so long. But I'm no doctor.
Mom teared up a bit when we talked about this rough evening, but she continues to be hopeful he'll bounce back. Me, too.
Hospice was here again today, as they will be every Monday, Wednesday, and Friday. We are likely going to have a hospital bed delivered to make Dad more comfortable (and hopefully help Mom get better sleep too).
Other Stuff:
I have been fighting a sickness of my own, one which began as some sniffles after my night on the bus coming home a week ago. This weekend it progressed into a lot of sinus pressure and discomfort, then it moved south and became nausea. Last night it again migrated, this time to my chest. I slept very little, as I had to be sitting up to be able to breathe. So, I made my own visit to the doctor this morning and was diagnosed with a lung infection of some sort, which has affected my voice and throat. Fabulous. Our family doctor prescribed some antibiotics and strong cough medicine, but apparently it will still take a few days of this medication for me to completely beat this thing. I am apparently no threat to my Dad's health, which is great, but as we all know, it is no fun not to be 100%. I feel a bit better tonight after a few doses of meds, and hopefully I'll manage to sleep well. I am really wiped out.
###
Mom remains optimistic about Dad bouncing back, and there is no reason to think he won't, as he is so variable from one hour to the next. We are still extremely grateful that he has no pain. Still, with every downturn is the looming fear that he won't bounce back and that we may have had our last moments of total (or even partial) lucidity. We still have hopes to do some digital recording of his memories and stories, but I worry we'll miss our window.
I've noticed with this roller coaster that sometimes it is so hard to have perspective since change with him is incremental (in the big picture sense). Taking a step back, I realize how we - as his caregivers - downwardly lower our standards for what we think is "good." When I think back to the weekend the interns spent here just a few weeks ago, Dad was asking pointed questions of them and prayed an eloquent prayer of hope and justice over our shared picnic lunch. Days before he had excitedly jaunted all over this area with Mom in the car, scoping out places for us to hike and play. Now, in an eerily imperceptible way, we've arrived at the point of just being thrilled when he shows some awareness or wants to do something other than sleep. Even when I first came home just a week ago, before the scooter was bestowed, he was using his walker effectively and making his way around the building. Now he cannot cross a room and has trouble standing on his own.
###
The weekend was relatively good, with a Saturday visit to one of Dad's old employers, a man who has always been a good friend to Dad and very good in his treatment of our family. Dad's Mom and sister visited on Mother's Day, and Dad surprisingly - with no prompting from us - ate a ginger cookie and some cheese danish without problem, the first such food he has had in weeks!?! He HAS always had a weakness for sweets.
###
I used my visit to the family doctor to talk about my Dad, and he reaffirmed our decision to go with hospice, saying that he wouldn't put Dad through the rigors of chemo at this point. Addressing our concern about further testing to confirm what is now just assumption that his cancer has spread elsewhere, our doctor again said that there is no value in further evaluation with his case given the nature of the cancer and the fact it has spread. He said that the prognosis for those with small cell lung cancer has not changed in 60 years. According to him, once it has spread, there is simply little to be done. Of note is that his own mother died of this same thing just 6 weeks from diagnosis. With her, they also did the brain radiation and then hospice care.
###
On the lighter side, I took the afternoon today to go golfing with a friend who was in town. It was nice to get away and take my mind off of things. And actually, I am really happy with my game considering I haven't golfed in about 2 years. I did very well with my drivers and irons, but aside from a few respectable putts, my short game is crap. The pitching wedge will be the end of me.
###
Tomorrow Mom and I were planning on a shopping trip to the "big city" (Erie), which is 60 miles away. The plan is for Grandma to come and sit with Dad for the day, but after his rough evening tonight, Mom is having second thoughts about leaving him for Grandma alone. Grandma did care for my Grandpa for years during the illness that took him from us at Thanksgiving, but I understand Mom's concern. We'll see how Dad is tomorrow.
###
I overheard Mom say to Dad, "Where's my fighting Marine?"
###
Tonight, I told my Dad I love him, and he nodded in response.
Dad:
Today has been a very difficult day. I've seen already that each day holds many signs of hope and despair, moments of optimism and fear. Today was maybe the most quintessential example of that thus far. Dad was up early today and seemed as adventurous as he has in days. He ventured across the street on his scooter to one of town's little diners, his first time to go that far to my knowledge. Shortly after he disappeared out the door for his morning trip to the building's side porch (my folks live in a 5-story apartment complex mostly for seniors), he called me in the apartment using the intercom and asked me for $10!?! He zoomed across the street and boldly ordered a biscuit and gravy and drank a chocolate milk. Unfortunately, it apparently all came up just as he finished, and he returned a bit soiled. We are thankful for all our friends at the restaurant, who cleaned him up and comped his meager meal. (One knows everyone in small towns like ours).
However, upon returning, he was as weak and unsteady walking across the room as I have seen him, and it took the help of both Mom and me to just get him the few feet from his chair in the living room to his bed. He was so timid and almost afraid with each step, thrusting his butt backwards and reaching his arms forward, like a child afraid to jump into a pool. Mom wonders if it is more of an emotional reaction to the embarrassment of throwing up his meal at his local coffee haunt in front of some of his friends.
But this evening has been most discouraging. He is almost completely out of sorts and has suddenly taken to wetting the bed, showing no interest in eating, and not being cooperative with some of his treatment because all he wants to do is sleep. Just now, I put some "paper shorts" on Dad to help in case other accidents, yet another example of the uncanny way our roles have reversed from when I was a baby.
Then again, during his final bedtime prep, he definitely said some lucid things, and he remembered what he had for breakfast when I asked (and he remembered throwing it up). It is really hit and miss, but I still think generally he knows what is going on. I imagine his cloudy-headedness is due to the tumors, which the radiation can only stave off for so long. But I'm no doctor.
Mom teared up a bit when we talked about this rough evening, but she continues to be hopeful he'll bounce back. Me, too.
Hospice was here again today, as they will be every Monday, Wednesday, and Friday. We are likely going to have a hospital bed delivered to make Dad more comfortable (and hopefully help Mom get better sleep too).
Other Stuff:
I have been fighting a sickness of my own, one which began as some sniffles after my night on the bus coming home a week ago. This weekend it progressed into a lot of sinus pressure and discomfort, then it moved south and became nausea. Last night it again migrated, this time to my chest. I slept very little, as I had to be sitting up to be able to breathe. So, I made my own visit to the doctor this morning and was diagnosed with a lung infection of some sort, which has affected my voice and throat. Fabulous. Our family doctor prescribed some antibiotics and strong cough medicine, but apparently it will still take a few days of this medication for me to completely beat this thing. I am apparently no threat to my Dad's health, which is great, but as we all know, it is no fun not to be 100%. I feel a bit better tonight after a few doses of meds, and hopefully I'll manage to sleep well. I am really wiped out.
###
Mom remains optimistic about Dad bouncing back, and there is no reason to think he won't, as he is so variable from one hour to the next. We are still extremely grateful that he has no pain. Still, with every downturn is the looming fear that he won't bounce back and that we may have had our last moments of total (or even partial) lucidity. We still have hopes to do some digital recording of his memories and stories, but I worry we'll miss our window.
I've noticed with this roller coaster that sometimes it is so hard to have perspective since change with him is incremental (in the big picture sense). Taking a step back, I realize how we - as his caregivers - downwardly lower our standards for what we think is "good." When I think back to the weekend the interns spent here just a few weeks ago, Dad was asking pointed questions of them and prayed an eloquent prayer of hope and justice over our shared picnic lunch. Days before he had excitedly jaunted all over this area with Mom in the car, scoping out places for us to hike and play. Now, in an eerily imperceptible way, we've arrived at the point of just being thrilled when he shows some awareness or wants to do something other than sleep. Even when I first came home just a week ago, before the scooter was bestowed, he was using his walker effectively and making his way around the building. Now he cannot cross a room and has trouble standing on his own.
###
The weekend was relatively good, with a Saturday visit to one of Dad's old employers, a man who has always been a good friend to Dad and very good in his treatment of our family. Dad's Mom and sister visited on Mother's Day, and Dad surprisingly - with no prompting from us - ate a ginger cookie and some cheese danish without problem, the first such food he has had in weeks!?! He HAS always had a weakness for sweets.
###
I used my visit to the family doctor to talk about my Dad, and he reaffirmed our decision to go with hospice, saying that he wouldn't put Dad through the rigors of chemo at this point. Addressing our concern about further testing to confirm what is now just assumption that his cancer has spread elsewhere, our doctor again said that there is no value in further evaluation with his case given the nature of the cancer and the fact it has spread. He said that the prognosis for those with small cell lung cancer has not changed in 60 years. According to him, once it has spread, there is simply little to be done. Of note is that his own mother died of this same thing just 6 weeks from diagnosis. With her, they also did the brain radiation and then hospice care.
###
On the lighter side, I took the afternoon today to go golfing with a friend who was in town. It was nice to get away and take my mind off of things. And actually, I am really happy with my game considering I haven't golfed in about 2 years. I did very well with my drivers and irons, but aside from a few respectable putts, my short game is crap. The pitching wedge will be the end of me.
###
Tomorrow Mom and I were planning on a shopping trip to the "big city" (Erie), which is 60 miles away. The plan is for Grandma to come and sit with Dad for the day, but after his rough evening tonight, Mom is having second thoughts about leaving him for Grandma alone. Grandma did care for my Grandpa for years during the illness that took him from us at Thanksgiving, but I understand Mom's concern. We'll see how Dad is tomorrow.
###
I overheard Mom say to Dad, "Where's my fighting Marine?"
###
Tonight, I told my Dad I love him, and he nodded in response.
posted by Bob at 10:32 PM
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