The events of the past 6 weeks or so have brought me close to death but failed to do me in. Although my head is not as clear as it was, I will attempt to recount my brushes with the grim reaper.
About 5 11/2 weeks ago, sleeping on my recliner, I needed to get up, for some reason. I was sedated with a phentonyl patch. I remember losing my balance, getting up and then falling head first into the glass door to the back of the house. Helped back onto the recliner, I slept the night, with a lump the size of a lemon on my forehead. Herb Boro called Judy the next morning and asked if there was anything he could do. He came to the house and immediately he and Judy took me to the hospital.
I was admitted with no platelets and no white blood cells, low hemoglobin. A CT scan showed no intracranial bleeding but I am sure I had a concussion. A blood culture revealed Staph Aureus, but not the antibiotic resistant type. My port had to be removed and I went on vein destroying IV nutrition. Every venipuncture was agony.
I had blood transfusions, platelet transfusions, drugs to encourage WBC production, labs, regular blood sugar measurements with oversized lancets, insulin.
After 2 weeks I was ready to go home, but my esophageal stent had been removed and I could not swallow. The day after discharge, I was back for a PEG tube and stent replacement.
I was home again, relatively comfortable for about 2 weeks when my heart rate went up to 180. No chest pain or other symptoms. In Dr Flam's office, he diagnosed atrial fibrillation and converted me to sinus rhythm with drugs.
Today, I saw Dr. Dale Merrill, an old colleague and cardiologist who confirmed I am on the right track.
Biopsies of my esophagus showed Merkel Cell cancer, but the repeat biopsy at the time of insertion of the smaller recent stent showed a lattice of connective tissue without living Merkel cells. Dr Lewis thinks it is an optimistic sigh that the Topotican worked. Dr Flam thinks it is an artifact of crushed cells.
Probably I will have a follow-up PET scan in the next 2 weeks to learn more.
So, after lying in my hospital bed conjuring up methods to hasten my demise, I now have room for optimism.
Tonight, I plan to briefly appear at the Lady Antebellum concert at the Save Mart Center.
I hope to be alive to celebrate 50 years of marriage to Judy, who has been a rock in support of me.
Wednesday, March 28, 2012
Monday, March 12, 2012
Ignoring the Sword of Damocles
Dad wrote a post a little more than a year ago asking "Is This What it is Like to be on Death Row?" He posited that "in a way, my situation is similar to that of somebody on death row. Merkel cell cancer is the executioner. Dr Nghiem is my defense attorney. He is appealing my sentence to higher courts." It was an apt analogy then, and intervening events have unfortunately brought another level of accuracy to the analogy. A year ago (even a few months ago), dad could forget he was on death row for long stretches of time. He could play with his grandchildren, dine and go on cruises with his wife, play bridge, and work. By contrast, a death row inmate may forget from time to time that he is on death row, but he remains imprisoned, unable to enjoy even a moment of normal life. The physical impact of the cancer is now making it harder to enjoy normal life.
My dad isn't a lawyer, so I doubt the distinction was intended, but when he wrote about death row, he said that he is "appealing my sentence to higher courts." Until now, we were hoping his conviction would be overturned, eliminating any accompanying sentence. I'd still love to see a full cure, but at this point we're through most or all of the appeal and a lengthy stay of the sentence pending appeal would be a welcome outcome on its own. The battle isn't over yet, but the most promising appeals of the conviction are behind us. I'm sure every death row inmate listens until the last second for the phone to ring with a pardon from the governor or a stay from the Supreme Court, and sometimes it does.
Hope remains, but as it diminishes we cross into another problem and another legal analogy: The chilling effect. At some point, the death row inmate in my dad's example may stop studying for the GED, stop learning new skills, and toward the end may even refuse to start a book so lengthy he might not finish it before his scheduled execution date.
While we wait, hoping for a stay from the Supreme Court of medical progress and treatment outcomes, dad battles daily with the question of how to spend the time he knows he has, regardless of treatment outcomes. Unlike the death row inmate, dad is home from the hospital, released from the confines of the death chamber's anteroom. He is free for now, but some of the trappings of his sentence remain -- a PEG feeding tube, weakness, and pain. All of the trappings can, for now, be managed (the pain with Vicodin, the weakness with physical therapy). The knowledge of his situation, however, is not quite so simple to manage.
Thurgood Marshall wrote in a dissenting Supreme Court opinion "That this Court will ultimately vindicate [somebody] ... is of little consequence - for the value of a sword of Damocles is that it hangs - not that it drops."
Our challenge is to find moments we can ignore the Sword of Damocles. The Sword of Damocles is a sword, suspended by a single hair, hanging above a ruler's throne, casting such a pall that the ruler soon begs to cede the throne (see footnote 1 below for a more detailed description).
In the days following dad's diagnosis, we understood Merkel Cell Carcinoma to be so deadly and aggressive that it seemed a Sword of Damocles, destruction a hair's breadth away. I struggled to accept that there was nothing to be done, but that was not in my nature. I found the MCC Google Group. George, and soon others in the group, reached out. Dr. Nghiem got involved. We soon realized that the sword may be hanging, but by something far more robust than a hair. Indeed, it was by no means certain that the sword could not be removed. Nearly two years later, the rope holding the sword may be fraying, but dad and the family have enjoyed birthdays, vacations, and good times even in the shadow of the threat.
Unfortunately, the chilling effect of the threat is settling in. I can't imagine what passes through dad's mind, but I know pain keeps him awake many nights. I doubt even he knows whether it is physical pain or emotional pain that is behind the insomnia. He does not feel up to having visitors, updating this blog, or engaging in anything that requires extended concentration. His cognition seems fine, but the weight of his circumstances surely makes concentration a hard task.
My oldest daughter, Eva, has visited him a few times. He spent a few minutes with 4 year old Sara yesterday. Sara said "I wish you could feel better."
The question is whether dad can feel better. Physically, it seems on balance that he does feel better. There is new pain on the left side under the lung (pleural pain), but it is somewhat less than the now-discontinued posterior mediastinal pain was. Dad is still using a walker for infrequent walks, but he is now sitting in a chair regularly, which wasn't happening last week. Dad is engaging in discussions more frequently, but he is becoming short of breath more quickly than before. His voice has been raspy and almost godfather-like since his stent replacement surgery. Dad is refusing most food and water by mouth, but he getting nutrition via a PEG tube.
Physical improvement aside, the sword still hangs, and the chill it casts has become quite strong. Other than those who die young and suddenly, the Sword of Damocles will one day hang over each of us. That dad has enjoyed nearly every day since his diagnosis is a testament to his strength. That he is having trouble enjoying the early days of his release from the hospital is not surprising.
He is scheduled to see Dr. Flam again on Friday, March 23. They will likely schedule a PET scan at that point. Dad saw no point in doing a PET scan earlier -- if it was good news and the chemo worked, he wouldn't be strong enough for another round yet anyhow. If it was bad news, learning it earlier wouldn't be helpful either. The esophageal biopsy that was done in conjunction with the removal of the original stent showed dead and dying tumor cells, so there is some objective evidence that the chemo worked. The closure of the esophagus after removal of the first stent and the new pain are of concern to dad. So we live with a couple of weeks of uncertainty. There is some thought that the left pleural pain may be pneumonia-related, so there may be some intervening diagnostic tests.
I wish there was some positive note I could conclude on, but it eludes me. It was three weeks ago yesterday that my dad went to the ICU, and so it has been three weeks since the reality of what is going on has solidified. If dad gets to feeling well enough to have some normal days, I'm sure he will take advantage of them. The appeals aren't yet exhausted either, and nobody refuses a pardon.
Footnotes:
1. From Wikipedia's description of the Sword of Damocles: The Damocles of the anecdote was an obsequious courtier in the court of Dionysius II of Syracuse, a fourth century BC tyrant of Syracuse, Italy. Pandering to his king, Damocles exclaimed that, as a great man of power and authority surrounded by magnificence, Dionysius was truly extremely fortunate. Dionysius then offered to switch places with Damocles, so that Damocles could taste that very fortune first hand. Damocles quickly and eagerly accepted the King's proposal. Damocles sat down in the king's throne surrounded by every luxury, but Dionysius arranged that a huge sword should hang above the throne, held at the pommel only by a single hair of a horse's tail. Damocles finally begged the tyrant that he be allowed to depart, because he no longer wanted to be so fortunate. Dionysius had successfully conveyed a sense of the constant fear in which the great man lives. Cicero uses this story as the last in a series of contrasting examples for reaching the conclusion he had been moving towards in this fifth Disputation, in which the theme is that virtue is sufficient for living a happy life.
My dad isn't a lawyer, so I doubt the distinction was intended, but when he wrote about death row, he said that he is "appealing my sentence to higher courts." Until now, we were hoping his conviction would be overturned, eliminating any accompanying sentence. I'd still love to see a full cure, but at this point we're through most or all of the appeal and a lengthy stay of the sentence pending appeal would be a welcome outcome on its own. The battle isn't over yet, but the most promising appeals of the conviction are behind us. I'm sure every death row inmate listens until the last second for the phone to ring with a pardon from the governor or a stay from the Supreme Court, and sometimes it does.
Hope remains, but as it diminishes we cross into another problem and another legal analogy: The chilling effect. At some point, the death row inmate in my dad's example may stop studying for the GED, stop learning new skills, and toward the end may even refuse to start a book so lengthy he might not finish it before his scheduled execution date.
While we wait, hoping for a stay from the Supreme Court of medical progress and treatment outcomes, dad battles daily with the question of how to spend the time he knows he has, regardless of treatment outcomes. Unlike the death row inmate, dad is home from the hospital, released from the confines of the death chamber's anteroom. He is free for now, but some of the trappings of his sentence remain -- a PEG feeding tube, weakness, and pain. All of the trappings can, for now, be managed (the pain with Vicodin, the weakness with physical therapy). The knowledge of his situation, however, is not quite so simple to manage.
Thurgood Marshall wrote in a dissenting Supreme Court opinion "That this Court will ultimately vindicate [somebody] ... is of little consequence - for the value of a sword of Damocles is that it hangs - not that it drops."
Our challenge is to find moments we can ignore the Sword of Damocles. The Sword of Damocles is a sword, suspended by a single hair, hanging above a ruler's throne, casting such a pall that the ruler soon begs to cede the throne (see footnote 1 below for a more detailed description).
Cicero says of the Sword of Damocles, "Does not Dionysius seem to have made it sufficiently clear that there can be nothing happy for the person over whom some fear always looms?"
In the days following dad's diagnosis, we understood Merkel Cell Carcinoma to be so deadly and aggressive that it seemed a Sword of Damocles, destruction a hair's breadth away. I struggled to accept that there was nothing to be done, but that was not in my nature. I found the MCC Google Group. George, and soon others in the group, reached out. Dr. Nghiem got involved. We soon realized that the sword may be hanging, but by something far more robust than a hair. Indeed, it was by no means certain that the sword could not be removed. Nearly two years later, the rope holding the sword may be fraying, but dad and the family have enjoyed birthdays, vacations, and good times even in the shadow of the threat.
Unfortunately, the chilling effect of the threat is settling in. I can't imagine what passes through dad's mind, but I know pain keeps him awake many nights. I doubt even he knows whether it is physical pain or emotional pain that is behind the insomnia. He does not feel up to having visitors, updating this blog, or engaging in anything that requires extended concentration. His cognition seems fine, but the weight of his circumstances surely makes concentration a hard task.
My oldest daughter, Eva, has visited him a few times. He spent a few minutes with 4 year old Sara yesterday. Sara said "I wish you could feel better."
The question is whether dad can feel better. Physically, it seems on balance that he does feel better. There is new pain on the left side under the lung (pleural pain), but it is somewhat less than the now-discontinued posterior mediastinal pain was. Dad is still using a walker for infrequent walks, but he is now sitting in a chair regularly, which wasn't happening last week. Dad is engaging in discussions more frequently, but he is becoming short of breath more quickly than before. His voice has been raspy and almost godfather-like since his stent replacement surgery. Dad is refusing most food and water by mouth, but he getting nutrition via a PEG tube.
Physical improvement aside, the sword still hangs, and the chill it casts has become quite strong. Other than those who die young and suddenly, the Sword of Damocles will one day hang over each of us. That dad has enjoyed nearly every day since his diagnosis is a testament to his strength. That he is having trouble enjoying the early days of his release from the hospital is not surprising.
He is scheduled to see Dr. Flam again on Friday, March 23. They will likely schedule a PET scan at that point. Dad saw no point in doing a PET scan earlier -- if it was good news and the chemo worked, he wouldn't be strong enough for another round yet anyhow. If it was bad news, learning it earlier wouldn't be helpful either. The esophageal biopsy that was done in conjunction with the removal of the original stent showed dead and dying tumor cells, so there is some objective evidence that the chemo worked. The closure of the esophagus after removal of the first stent and the new pain are of concern to dad. So we live with a couple of weeks of uncertainty. There is some thought that the left pleural pain may be pneumonia-related, so there may be some intervening diagnostic tests.
I wish there was some positive note I could conclude on, but it eludes me. It was three weeks ago yesterday that my dad went to the ICU, and so it has been three weeks since the reality of what is going on has solidified. If dad gets to feeling well enough to have some normal days, I'm sure he will take advantage of them. The appeals aren't yet exhausted either, and nobody refuses a pardon.
Footnotes:
1. From Wikipedia's description of the Sword of Damocles: The Damocles of the anecdote was an obsequious courtier in the court of Dionysius II of Syracuse, a fourth century BC tyrant of Syracuse, Italy. Pandering to his king, Damocles exclaimed that, as a great man of power and authority surrounded by magnificence, Dionysius was truly extremely fortunate. Dionysius then offered to switch places with Damocles, so that Damocles could taste that very fortune first hand. Damocles quickly and eagerly accepted the King's proposal. Damocles sat down in the king's throne surrounded by every luxury, but Dionysius arranged that a huge sword should hang above the throne, held at the pommel only by a single hair of a horse's tail. Damocles finally begged the tyrant that he be allowed to depart, because he no longer wanted to be so fortunate. Dionysius had successfully conveyed a sense of the constant fear in which the great man lives. Cicero uses this story as the last in a series of contrasting examples for reaching the conclusion he had been moving towards in this fifth Disputation, in which the theme is that virtue is sufficient for living a happy life.
Tuesday, March 6, 2012
Two Steps Forward, One Step Back
Dr. Flam signed my dad's discharge papers early yesterday morning, and he was discharged mid-afternoon yesterday.
After the stent was removed, my dad actually enjoyed chicken noodle soup. He put away quite a few lemon yogurts and bowls of cream of wheat. His eating was less enthusiastic yesterday, but I wrote that off to jitters about going home. Last night he said he had no appetite, but managed to eat some soup and a lemon yogurt. I didn't see the pattern, but in retrospect, it was an echo of the earlier pattern that preceded acute esophagus issues.
This morning started as a really normal day for me. Amid the buzz of my three daughters getting ready for school, I called my parents around 8:00 am to see how dad's night went. Me: "Hey, mom, how did dad do last night?" Mom: "I can't talk. I'm on the other line with Dr. Lewis." Me: "Is everything OK?" Mom: "No, he can't swallow again, he's going to the hospital. I'll call you back in a minute."
I wanted to cry, and I did tear up, but that is all I had time for. It was time for the team to pull together. The day went from normal to high gear.
My youngest brother, Michael, helped my mom get my dad ready to go to the hospital. In the meantime, my other brother, Brian, was still recovering from his Saturday surgery. Brian wasn't feeling great. In the midst of it all, my mom had to go to the doctor. To top it off, my youngest daughter, Bel, stopped getting ready for school and started complaining she didn't feel good. She was off to the doctor. I had a regularly scheduled doctor's appointment.
My dad was scheduled to have a PEG feeding tube and a new (smaller) stent put in at noon, and was supposed to be at the hospital for 10:30. So the morning went like this:
8:45 My wife, Dana, took Sara to school
8:45 I took Eva to school
9:00 I went to Home Depot to buy a wireless doorbell for dad to use as a call button (press downstairs, rings upstairs)
9:15 Mom went to the doctor
9:40 I went to the doctor
9:45 Mom drops off an antibiotics prescription at CVS, they say they can't fill it fast enough so she can get home in time to take dad to the hospital.
10:00 Michael had arranged to have a supplier come over and evaluate whether a chair lift can be installed on the staircase. Michael handles the visit, but it doesn't look like it is going to be something that makes sense to do.
10:10 My wife Dana volunteers to pick up my mom's prescription at CVS and take it to the hospital.
10:15 I pull up at my parents' house as they're putting my dad in the car
10:16 Youngest brother Michael drives my dad's car to the hospital; I drive my car to the hospital; my mom drives my dad in her car to the hospital. Turns out we actually needed the flexibility of multiple cars, so lack of carpooling was good
10:30 Shuster caravan arrives at hospital
10:45 Dana arrives with the prescription. CVS gave her my dad's prescription, not my mom's. My mom needs those antibiotics. Dana heads back to CVS to get the prescription. Dana doesn't complain at all, which is more than I could have pulled off.
11:15 Dana arrives with the correct prescription. We discuss registering Sara (our middle daughter) for Kindergarten, which apparently requires camping out at the school by 6:00 a.m. tomorrow in order to avoid getting assigned to a school all the way across town. We realize that we have a problem because Bel's doctor appointment is 2:00 pm and we won't have a free person to pick up my oldest daughter Eva at 3:05 p.m. Dana calls Margaret (Eva's mom, my ex-wife) and she cancels her doctor's appointment so Eva can take the school bus to her house. I'm super-thankful for a very functional blended family.
11:45 Dad is having pain and gets a painkiller via IV (the IV went it without much difficulty, a good thing)
12:00 Dad is taken to the endoscopy suite, then a bit later to radiology where the procedure will be done.
12:05 We all talk with Dr. Lewis. Michael, mom and I are sent to the waiting room.
12:10 We wait.
1:00 Dr. Lewis gets us, and tells us the procedure went well. He walks us back to where dad is. We ask him what the biopsy results were from the sample he took on Friday when removing the stent, and he said he didn't have them yet, but that Dr. Flam would have them. Mom puts in a call to Dr. Flam asking for them.
1:10 Michael goes home to keep an eye on Brian. Mom and I wait for dad to wake up.
1:30 Dad wakes up, we visit with him, he's barely awake. We go back to the waiting room so he can sleep.
2:00 Dana takes Bel to the doctor. Dual ear infection. Dana's third trip to the pharmacy is underway.
2:00 Mom and I are shown a really bad video of a woman with "flock of seagulls" hair explaining (incorrectly, it turns out) how to use a feeding tube. There are 20 minutes I'm never getting back.
2:30 Dad is ready to go, mom goes to get the car. Dad tells me that he has a vague recollection of fighting the doctor's efforts to get the tube in. That probably explains the extra anesthetic he got and the longer than expected groggy period.
3:00 Nurse helps dad get into the car.
3:15 We arrive at my parents' house. (I think I might have gotten about 30 minutes off on this schedule, since 3:15 seems earlier than it really happened).
3:30 Dad is in his bed, exhausted.
3:35 Dad is scheduled to see Dr. Flam at 8:30 tomorrow, but we think today's events probably make that appointment unnecessary. Mom calls Dr. Flam again asking for biopsy results and whether he needs to go to his appointment.
4:00 First Super Tuesday results come in. Dad turns it on and watches for a few minutes, then naps.
4:55 Mom places third call to Dr. Flam, and he's already on the exchange. So we still don't know if we have biopsy results or an appointment tomorrow.
5:30 In the ironic moment of the day, I get a call from St. Agnes billing about a bill I got and apparently didn't pay quickly enough -- because I was too busy caring for my dad as a St. Agnes inpatient. The message said to call them back and that they were open until 6:00 p.m. I called back right away, but it turns out that they were only open until 3:00 p.m. Very annoying.
6:00 Dad is settled. He has some pain related to the PEG, but he seems OK. I head to the store to get dinner.
Dad wants to have a few days without a doctor or hospital visit, and we will try to accomplish that. Today we had one doctor visit for each generation (my mom, myself, and my daughter) -- plus my dad's outpatient procedure.
My wife has been great. My oldest daughter, Eva, has been a terrific help. My youngest daughters have been solid. My youngest brother took control of what needed to be controlled. My middle brother soldiered through his discomfort. My ex wife helped. My mom was amazing, fighting through her infection. There is no substitute for a family that pulls together. My dad must have done something right because he built the framework for all of this since becoming a parent in 1967.
I'm tired just looking at the list of what happened today. I wish there was some witty closing sentence I could use, but I have to recycle the one thing I said today that got my dad to smile. While we were waiting for Dr. Lewis, I told my dad "you know, just three more of these surgeries and the fourth one is free." It was nice to see him smile.
After the stent was removed, my dad actually enjoyed chicken noodle soup. He put away quite a few lemon yogurts and bowls of cream of wheat. His eating was less enthusiastic yesterday, but I wrote that off to jitters about going home. Last night he said he had no appetite, but managed to eat some soup and a lemon yogurt. I didn't see the pattern, but in retrospect, it was an echo of the earlier pattern that preceded acute esophagus issues.
This morning started as a really normal day for me. Amid the buzz of my three daughters getting ready for school, I called my parents around 8:00 am to see how dad's night went. Me: "Hey, mom, how did dad do last night?" Mom: "I can't talk. I'm on the other line with Dr. Lewis." Me: "Is everything OK?" Mom: "No, he can't swallow again, he's going to the hospital. I'll call you back in a minute."
I wanted to cry, and I did tear up, but that is all I had time for. It was time for the team to pull together. The day went from normal to high gear.
My youngest brother, Michael, helped my mom get my dad ready to go to the hospital. In the meantime, my other brother, Brian, was still recovering from his Saturday surgery. Brian wasn't feeling great. In the midst of it all, my mom had to go to the doctor. To top it off, my youngest daughter, Bel, stopped getting ready for school and started complaining she didn't feel good. She was off to the doctor. I had a regularly scheduled doctor's appointment.
My dad was scheduled to have a PEG feeding tube and a new (smaller) stent put in at noon, and was supposed to be at the hospital for 10:30. So the morning went like this:
8:45 My wife, Dana, took Sara to school
8:45 I took Eva to school
9:00 I went to Home Depot to buy a wireless doorbell for dad to use as a call button (press downstairs, rings upstairs)
9:15 Mom went to the doctor
9:40 I went to the doctor
9:45 Mom drops off an antibiotics prescription at CVS, they say they can't fill it fast enough so she can get home in time to take dad to the hospital.
10:00 Michael had arranged to have a supplier come over and evaluate whether a chair lift can be installed on the staircase. Michael handles the visit, but it doesn't look like it is going to be something that makes sense to do.
10:10 My wife Dana volunteers to pick up my mom's prescription at CVS and take it to the hospital.
10:15 I pull up at my parents' house as they're putting my dad in the car
10:16 Youngest brother Michael drives my dad's car to the hospital; I drive my car to the hospital; my mom drives my dad in her car to the hospital. Turns out we actually needed the flexibility of multiple cars, so lack of carpooling was good
10:30 Shuster caravan arrives at hospital
10:45 Dana arrives with the prescription. CVS gave her my dad's prescription, not my mom's. My mom needs those antibiotics. Dana heads back to CVS to get the prescription. Dana doesn't complain at all, which is more than I could have pulled off.
11:15 Dana arrives with the correct prescription. We discuss registering Sara (our middle daughter) for Kindergarten, which apparently requires camping out at the school by 6:00 a.m. tomorrow in order to avoid getting assigned to a school all the way across town. We realize that we have a problem because Bel's doctor appointment is 2:00 pm and we won't have a free person to pick up my oldest daughter Eva at 3:05 p.m. Dana calls Margaret (Eva's mom, my ex-wife) and she cancels her doctor's appointment so Eva can take the school bus to her house. I'm super-thankful for a very functional blended family.
11:45 Dad is having pain and gets a painkiller via IV (the IV went it without much difficulty, a good thing)
12:00 Dad is taken to the endoscopy suite, then a bit later to radiology where the procedure will be done.
12:05 We all talk with Dr. Lewis. Michael, mom and I are sent to the waiting room.
12:10 We wait.
1:00 Dr. Lewis gets us, and tells us the procedure went well. He walks us back to where dad is. We ask him what the biopsy results were from the sample he took on Friday when removing the stent, and he said he didn't have them yet, but that Dr. Flam would have them. Mom puts in a call to Dr. Flam asking for them.
1:10 Michael goes home to keep an eye on Brian. Mom and I wait for dad to wake up.
1:30 Dad wakes up, we visit with him, he's barely awake. We go back to the waiting room so he can sleep.
2:00 Dana takes Bel to the doctor. Dual ear infection. Dana's third trip to the pharmacy is underway.
2:00 Mom and I are shown a really bad video of a woman with "flock of seagulls" hair explaining (incorrectly, it turns out) how to use a feeding tube. There are 20 minutes I'm never getting back.
2:30 Dad is ready to go, mom goes to get the car. Dad tells me that he has a vague recollection of fighting the doctor's efforts to get the tube in. That probably explains the extra anesthetic he got and the longer than expected groggy period.
3:00 Nurse helps dad get into the car.
3:15 We arrive at my parents' house. (I think I might have gotten about 30 minutes off on this schedule, since 3:15 seems earlier than it really happened).
3:30 Dad is in his bed, exhausted.
3:35 Dad is scheduled to see Dr. Flam at 8:30 tomorrow, but we think today's events probably make that appointment unnecessary. Mom calls Dr. Flam again asking for biopsy results and whether he needs to go to his appointment.
4:00 First Super Tuesday results come in. Dad turns it on and watches for a few minutes, then naps.
4:55 Mom places third call to Dr. Flam, and he's already on the exchange. So we still don't know if we have biopsy results or an appointment tomorrow.
5:30 In the ironic moment of the day, I get a call from St. Agnes billing about a bill I got and apparently didn't pay quickly enough -- because I was too busy caring for my dad as a St. Agnes inpatient. The message said to call them back and that they were open until 6:00 p.m. I called back right away, but it turns out that they were only open until 3:00 p.m. Very annoying.
6:00 Dad is settled. He has some pain related to the PEG, but he seems OK. I head to the store to get dinner.
Dad wants to have a few days without a doctor or hospital visit, and we will try to accomplish that. Today we had one doctor visit for each generation (my mom, myself, and my daughter) -- plus my dad's outpatient procedure.
My wife has been great. My oldest daughter, Eva, has been a terrific help. My youngest daughters have been solid. My youngest brother took control of what needed to be controlled. My middle brother soldiered through his discomfort. My ex wife helped. My mom was amazing, fighting through her infection. There is no substitute for a family that pulls together. My dad must have done something right because he built the framework for all of this since becoming a parent in 1967.
I'm tired just looking at the list of what happened today. I wish there was some witty closing sentence I could use, but I have to recycle the one thing I said today that got my dad to smile. While we were waiting for Dr. Lewis, I told my dad "you know, just three more of these surgeries and the fourth one is free." It was nice to see him smile.
Monday, March 5, 2012
There's No Place Like Home
Last night dad said he was hoping to go home on Tuesday or Wednesday. I told him that it lined up pretty well with my guess that he would be going home by around Thursday. As it turns out, we were both wrong: Dr. Flam just signed the discharge papers.
Doc Dave is going home today.
It is such great news. There are dozens of little details that we will need to take care of in the next few hours and days, but they all seem trivially easy compared to the battle my dad just waged and won.
Dad's war with Merkel Cell Carcinoma continues, and every battle he fights shows his courage and serves as an example and inspiration to me. It should come as no surprise that we discussed how to proceed with dignity and comfort should this battle have gone badly, and dad's ability to initiate that blunt and difficult discussion speaks to his inner strength.
I realize I paid very good attention to how my dad interacted with my grandfather when my grandfather was ill, because I had a rich reservoir of observations to model my care taking behavior on. When I face a serious illness, as we all eventually do, I now have a heroic fighter to model my response to illness on as well.
There is a story they used to tell students on their first day at Harvard Law, and I suspect I'll tell it a bit wrong. My recollection is this: Two hunters are sleeping in their tent in the woods. An enormous bear comes crashing through the forest and roars. One hunter starts putting on his shoes. The other, still barefoot, says "Why are putting on shoes? You can't outrun the bear!" The first hunter says "I don't need to outrun the bear. I just need to outrun you."
Of interest is that my dad considered himself stage IV on November 24, 2010. According to his post last year, he had only about a 25% chance of being alive today, and some people in fact do outrun and eventually survive the bear. Every new day that my dad outruns the MCC is a victory we will celebrate.
On a practical note, my dad is surely going to be exhausted for the next few days and will be very unlikely to take visitors or phone calls. The transition from hospital to home is one that we will all need to focus on.
Doc Dave is going home today.
It is such great news. There are dozens of little details that we will need to take care of in the next few hours and days, but they all seem trivially easy compared to the battle my dad just waged and won.
Dad's war with Merkel Cell Carcinoma continues, and every battle he fights shows his courage and serves as an example and inspiration to me. It should come as no surprise that we discussed how to proceed with dignity and comfort should this battle have gone badly, and dad's ability to initiate that blunt and difficult discussion speaks to his inner strength.
I realize I paid very good attention to how my dad interacted with my grandfather when my grandfather was ill, because I had a rich reservoir of observations to model my care taking behavior on. When I face a serious illness, as we all eventually do, I now have a heroic fighter to model my response to illness on as well.
There is a story they used to tell students on their first day at Harvard Law, and I suspect I'll tell it a bit wrong. My recollection is this: Two hunters are sleeping in their tent in the woods. An enormous bear comes crashing through the forest and roars. One hunter starts putting on his shoes. The other, still barefoot, says "Why are putting on shoes? You can't outrun the bear!" The first hunter says "I don't need to outrun the bear. I just need to outrun you."
Of interest is that my dad considered himself stage IV on November 24, 2010. According to his post last year, he had only about a 25% chance of being alive today, and some people in fact do outrun and eventually survive the bear. Every new day that my dad outruns the MCC is a victory we will celebrate.
On a practical note, my dad is surely going to be exhausted for the next few days and will be very unlikely to take visitors or phone calls. The transition from hospital to home is one that we will all need to focus on.
Friday, March 2, 2012
It's Heavy
My dad has spent the last 12 nights in the hospital. The urgency of the first days has given way to a different world where the hours, days, nights, even weeks seem to run together.
As much as we try to empathize with others, we never really know what they are feeling or thinking. I do know what my dad has seen, heard, and had done to him since coming to the hospital. I've taken a photograph of the view my dad has had continuously for the past ten days. We've taken time to decorate the wall for him with the pictures we think he would most like.
On the left is a group shot (taken on the cruise in December). On the right is a grid of photos, arranged as follows:
[Eva] [Sara] [Sammie]
[Bel] [Eli]
[Family] [Rocky]
Eva is my oldest daughter (now 11); Sara is my middle daughter (now 4); Sammie is my brother's daughter (turned 4 a few days ago); Bel is my youngest daughter (now 2); Eli is my brother's son (now 1). Rocky is my parents' golden doodle. Along the bottom of the photo is a banner my 2 and 4 year olds made for him.
I've spent more time with my father in the past two weeks than in any other two week period since I was a child living at home. Over the years, we've talked work, family, and politics, but this is only the second time I can remember that every conversation and moment of silence we shared has been either about a single emotionally important event (in this case, dad's illness) or discussed with an unspoken awareness that we're not discussing that event.
The tenor is captured well by a conversation we had a week ago. My dad was lying in the bed, covered with quite a few sheets. He was shuffling his feet a bit, then stopped, looked over, and said "It's heavy." I leaned in and asked "what's heavy? The blankets?" His response was "no, it's heavy, the stuff I'm thinking about." I asked if he wanted to discuss it, and he said "not now".
His dry wit still shows. A few days later, he was having a tough night, and I said "I'm sorry, dad. I know this isn't how you would have wanted to spend your evening." Without pause, he said "evenings".
Last night my dad said I could update his blog going forward, so I'm putting up this post to bring the blog up to date with what has gone on over the past two weeks. First off, a technical note: I found the long URL for this blog made it nearly impossible to get people to remember how to find my dad's blog. Rather than keep telling them to "search Google for mcc and shuster", I created a new URL that redirects to it: http://mcc.shuster.com/ The blog continues to be hosted on the old URL, but http://mcc.shuster.com/ takes you there.
Since I last updated the blog with the post "Dictated But Not Read", there have been a lot of changes, but the bottom line is that my dad's immediate condition is improved and we have no definitive data on what is going on with the cancer.
The initial issue with sepsis was probably caused by compromise to the immune system as a complication from the chemo with Topotecan. My dad's last blog post before going to the ER noted the various side effects of the Topotican, but noted that "With that parade of complaints, I am still optimistic that this drug, the Topo will kill enough tumor to allow me a remission, where I can have some snippets of normal life." Nothing in the time between then and now has worsened the chances of that optimistic outcome.
While I don't have the blood counts from before he was hospitalized, I do have the counts for the last several days:
2/26/12 2/27/12 2/28/12 2/29/12 3/01/12 3/02/12
WBC count 0.3 0.4 0.5 1.3 2.6 7.1
Platelet 12.0 105.0 76.0 38.0 31.0 27.0
RBC count 3.09 3.10 3.01 2.93 2.75 2.65
Hemoglobin 9.6 9.5 9.2 9.2 8.5 8.2
Neutrophil 0.10 0.10 0.30 1.10 2.30 6.70
Normal ranges:
WBC count 4.5-11.0 K/mcL
Platelet 150-400 K/mcL
RBC count 4.70-6.10 M/mcL
Hemoglobin 14.0-18.0 g/dL
Neutrophil 2.60-8.20 K/mcL
Dad was hospitalized on Feb. 19, so a week after his hospitalization, his counts had not yet recovered. His immune system (apparently Neutrophil is a key thing) was essentially non-functional until 10 days after hospital admission, and not normal until 12 days after admission. His blood (taken upon admission) was positive for gram positive cocci in clusters, and eventually cultured to show presence of a particular strain of staph. He was given broad antibiotic coverage initially, then the coverage was reduced to target the identified strain of bacteria. After he developed a new fever, his coverage was again broadened.
Dad was moved out of the ICU around midnight on Feb. 23. He was moved into a regular room with neutropenic isolation because of the compromised immune system. This meant lots of hand washing and wearing a mask. Note to caregivers: Do not try to drink hot tea with a mask on -- I did it twice before I realized I should just not bring drinks into the room.
Because it was unclear what the initial source of staph was, and because of concern that the port was either the cause of the infection or had become infected, the port was removed on Feb. 26.
His heart rate went from 80 to 90 around Feb. 26, then from 90 to 100 on Feb. 27. On Feb. 28, he stayed awake from mid-afternoon more or less all night. Around 2:30 am he developed sinus tach at 120 beats per minute, and around 3:00 am he developed atrial fibrillation at around 140 beats per minute. When dad heard that, he said "oh shit". Some say doctors make the worst patients, but I think it must be scariest for doctors when they are patients. They know exactly what they should be scared of.
At that point, I called my mom and let her know what was going on. I intended to let her know to come in early, but of course she instead decided to come in immediately.
They gave him an IV medication to restore normal rhythm, and his heart rhythm became normal and his rate dropped back to around 102 to 105 beats per minute. The rate became normal shortly thereafter. On top of everything else, his pain from the stent was spiking at that moment. His temperature went from 38.1 to 37.7 back to 38.4 that night. By the morning, his fever was down to 99.7 (yes, I'm aware that switching between centigrade and Fahrenheit is confusing) and his pulse was 89.
His antibiotic coverage was broadened, and his temperature returned to normal (or a bit below normal actually). By February 29, his immune system had recovered enough to discontinue the isolation precautions. Finally, I can sit next to him and smile without having a mask covering it all up.
On the morning on March 1, after a few days of rainy, cloudy weather, the sun rose to a beautiful purple sky that quickly transitioned to blue. There were some clouds, but they were distant on the horizon. It was an unexpected but wonderful metaphor.
There has been a lot of difficulty with IV lines. After the port was removed, he needed to get PPN (the weaker version of TPN, IV nutrition) in a regular IV line. This irritated his veins. Same thing with some of the antibiotics. He needed three IV lines at one point, but then one went bad. He was suspecting it would go bad, and one night after starting the PPN in that IV line, he experienced a profound hot flush, lasting for about 5 minutes. They pulled that IV. Another IV went bad later that day. They put in a new line. The new line and the third "old" line went bad today. He currently has only a single line. There is an open question about whether or when they will put in a central line, such as a "PIC" line.
The pain from the stent has been continuous. He had the stent removed at 3:00 p.m. today, March 2. The removal went very well. His esophagus was fully open. The doctor reported seeing material that had the appearance of necrotic tumor. He took a biopsy, and results of the biopsy should be available either Saturday or Monday. The esophagus remaining fully open and the observation of potentially necrotic tumor are both positive signs. The stent removal was just a few hours ago, so we don't yet know whether the esophagus will remain fully open.
I leave it to my dad to discuss his feelings about all of this, and I hope he will resume blogging soon. I can say that he has experienced some days when he is very positive, and some days when he is very negative, and those feelings do not always correlate to how well he is doing physically. There is a lot of uncertainty -- will his esophagus remain open? Will his esophageal neuro-muscular function be good? Will he be able to eat enough to get off of IV nutrition? When will he get a PET scan? What will it show? What will the biopsy show? What will it be like to go home? How much care will he want? If the tumor did shrink, what would another round of chemo be like? Of course, there are also the important big picture questions.
Dad is still groggy from the anesthetic, but he reports a reduction in pain after removal of the stent.
Tonight my mom is staying at St. Agnes with dad. My middle brother, Brian, goes in for surgery tomorrow afternoon (Saturday). It is surgery for something causing esophageal issues. My youngest brother, Michael, arrives tomorrow evening. I expect to spend tomorrow night with my dad, and my mom expects to spend tomorrow night with Brian. That is a whole lot of activity in a short period of time. Thankfully, my wife has been amazing about watching the kids so I am free to be there for my dad.
Dad isn't yet feeling up to having visitors or taking calls. He greatly appreciates all of the friendship and support.
As much as we try to empathize with others, we never really know what they are feeling or thinking. I do know what my dad has seen, heard, and had done to him since coming to the hospital. I've taken a photograph of the view my dad has had continuously for the past ten days. We've taken time to decorate the wall for him with the pictures we think he would most like.
The view from my dad's hospital bed.
On the left is a group shot (taken on the cruise in December). On the right is a grid of photos, arranged as follows:
[Eva] [Sara] [Sammie]
[Bel] [Eli]
[Family] [Rocky]
Eva is my oldest daughter (now 11); Sara is my middle daughter (now 4); Sammie is my brother's daughter (turned 4 a few days ago); Bel is my youngest daughter (now 2); Eli is my brother's son (now 1). Rocky is my parents' golden doodle. Along the bottom of the photo is a banner my 2 and 4 year olds made for him.
I've spent more time with my father in the past two weeks than in any other two week period since I was a child living at home. Over the years, we've talked work, family, and politics, but this is only the second time I can remember that every conversation and moment of silence we shared has been either about a single emotionally important event (in this case, dad's illness) or discussed with an unspoken awareness that we're not discussing that event.
The tenor is captured well by a conversation we had a week ago. My dad was lying in the bed, covered with quite a few sheets. He was shuffling his feet a bit, then stopped, looked over, and said "It's heavy." I leaned in and asked "what's heavy? The blankets?" His response was "no, it's heavy, the stuff I'm thinking about." I asked if he wanted to discuss it, and he said "not now".
His dry wit still shows. A few days later, he was having a tough night, and I said "I'm sorry, dad. I know this isn't how you would have wanted to spend your evening." Without pause, he said "evenings".
Last night my dad said I could update his blog going forward, so I'm putting up this post to bring the blog up to date with what has gone on over the past two weeks. First off, a technical note: I found the long URL for this blog made it nearly impossible to get people to remember how to find my dad's blog. Rather than keep telling them to "search Google for mcc and shuster", I created a new URL that redirects to it: http://mcc.shuster.com/ The blog continues to be hosted on the old URL, but http://mcc.shuster.com/ takes you there.
Since I last updated the blog with the post "Dictated But Not Read", there have been a lot of changes, but the bottom line is that my dad's immediate condition is improved and we have no definitive data on what is going on with the cancer.
The initial issue with sepsis was probably caused by compromise to the immune system as a complication from the chemo with Topotecan. My dad's last blog post before going to the ER noted the various side effects of the Topotican, but noted that "With that parade of complaints, I am still optimistic that this drug, the Topo will kill enough tumor to allow me a remission, where I can have some snippets of normal life." Nothing in the time between then and now has worsened the chances of that optimistic outcome.
While I don't have the blood counts from before he was hospitalized, I do have the counts for the last several days:
2/26/12 2/27/12 2/28/12 2/29/12 3/01/12 3/02/12
WBC count 0.3 0.4 0.5 1.3 2.6 7.1
Platelet 12.0 105.0 76.0 38.0 31.0 27.0
RBC count 3.09 3.10 3.01 2.93 2.75 2.65
Hemoglobin 9.6 9.5 9.2 9.2 8.5 8.2
Neutrophil 0.10 0.10 0.30 1.10 2.30 6.70
Normal ranges:
WBC count 4.5-11.0 K/mcL
Platelet 150-400 K/mcL
RBC count 4.70-6.10 M/mcL
Hemoglobin 14.0-18.0 g/dL
Neutrophil 2.60-8.20 K/mcL
Dad was hospitalized on Feb. 19, so a week after his hospitalization, his counts had not yet recovered. His immune system (apparently Neutrophil is a key thing) was essentially non-functional until 10 days after hospital admission, and not normal until 12 days after admission. His blood (taken upon admission) was positive for gram positive cocci in clusters, and eventually cultured to show presence of a particular strain of staph. He was given broad antibiotic coverage initially, then the coverage was reduced to target the identified strain of bacteria. After he developed a new fever, his coverage was again broadened.
Dad was moved out of the ICU around midnight on Feb. 23. He was moved into a regular room with neutropenic isolation because of the compromised immune system. This meant lots of hand washing and wearing a mask. Note to caregivers: Do not try to drink hot tea with a mask on -- I did it twice before I realized I should just not bring drinks into the room.
Because it was unclear what the initial source of staph was, and because of concern that the port was either the cause of the infection or had become infected, the port was removed on Feb. 26.
His heart rate went from 80 to 90 around Feb. 26, then from 90 to 100 on Feb. 27. On Feb. 28, he stayed awake from mid-afternoon more or less all night. Around 2:30 am he developed sinus tach at 120 beats per minute, and around 3:00 am he developed atrial fibrillation at around 140 beats per minute. When dad heard that, he said "oh shit". Some say doctors make the worst patients, but I think it must be scariest for doctors when they are patients. They know exactly what they should be scared of.
At that point, I called my mom and let her know what was going on. I intended to let her know to come in early, but of course she instead decided to come in immediately.
They gave him an IV medication to restore normal rhythm, and his heart rhythm became normal and his rate dropped back to around 102 to 105 beats per minute. The rate became normal shortly thereafter. On top of everything else, his pain from the stent was spiking at that moment. His temperature went from 38.1 to 37.7 back to 38.4 that night. By the morning, his fever was down to 99.7 (yes, I'm aware that switching between centigrade and Fahrenheit is confusing) and his pulse was 89.
His antibiotic coverage was broadened, and his temperature returned to normal (or a bit below normal actually). By February 29, his immune system had recovered enough to discontinue the isolation precautions. Finally, I can sit next to him and smile without having a mask covering it all up.
On the morning on March 1, after a few days of rainy, cloudy weather, the sun rose to a beautiful purple sky that quickly transitioned to blue. There were some clouds, but they were distant on the horizon. It was an unexpected but wonderful metaphor.
There has been a lot of difficulty with IV lines. After the port was removed, he needed to get PPN (the weaker version of TPN, IV nutrition) in a regular IV line. This irritated his veins. Same thing with some of the antibiotics. He needed three IV lines at one point, but then one went bad. He was suspecting it would go bad, and one night after starting the PPN in that IV line, he experienced a profound hot flush, lasting for about 5 minutes. They pulled that IV. Another IV went bad later that day. They put in a new line. The new line and the third "old" line went bad today. He currently has only a single line. There is an open question about whether or when they will put in a central line, such as a "PIC" line.
The pain from the stent has been continuous. He had the stent removed at 3:00 p.m. today, March 2. The removal went very well. His esophagus was fully open. The doctor reported seeing material that had the appearance of necrotic tumor. He took a biopsy, and results of the biopsy should be available either Saturday or Monday. The esophagus remaining fully open and the observation of potentially necrotic tumor are both positive signs. The stent removal was just a few hours ago, so we don't yet know whether the esophagus will remain fully open.
I leave it to my dad to discuss his feelings about all of this, and I hope he will resume blogging soon. I can say that he has experienced some days when he is very positive, and some days when he is very negative, and those feelings do not always correlate to how well he is doing physically. There is a lot of uncertainty -- will his esophagus remain open? Will his esophageal neuro-muscular function be good? Will he be able to eat enough to get off of IV nutrition? When will he get a PET scan? What will it show? What will the biopsy show? What will it be like to go home? How much care will he want? If the tumor did shrink, what would another round of chemo be like? Of course, there are also the important big picture questions.
Dad is still groggy from the anesthetic, but he reports a reduction in pain after removal of the stent.
Tonight my mom is staying at St. Agnes with dad. My middle brother, Brian, goes in for surgery tomorrow afternoon (Saturday). It is surgery for something causing esophageal issues. My youngest brother, Michael, arrives tomorrow evening. I expect to spend tomorrow night with my dad, and my mom expects to spend tomorrow night with Brian. That is a whole lot of activity in a short period of time. Thankfully, my wife has been amazing about watching the kids so I am free to be there for my dad.
Dad isn't yet feeling up to having visitors or taking calls. He greatly appreciates all of the friendship and support.
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