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.
Tuesday, March 6, 2012
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.
Monday, February 20, 2012
Dictated But Not Read
My dad asked me to update his blog. He has been in the ICU for about the past 24 hours, and is about to spend his second night there. His voice, wit and personality have come through beautifully in his blog posts. I cannot emulate those qualities, but I hope to at least accurately convey the ideas he shared with me. If I get some of the ideas wrong, I hope he will soon correct them in a post of his own.
He first asked me to express his deep appreciation for the support he has received from all of you.
He then asked me to share his current status.
Since his last post, his energy had declined. He was given a week of chemo as planned, but then his cell counts became too low to continue. The new plan was to take a week off and then restart. During this time, he was in significant pain (seemingly from the stent, but there was some generalized pain). There were plans for him to have the stent removed on Tuesday and replaced (if necessary) by a smaller stent. The plans were worked out late in the week, but given the long weekend the surgery was scheduled for Tuesday. He was given a 72 hour Fentanyl patch for the pain. My mom changed the patch on Saturday, and a few hours into the second patch, he began to experience shallow, somewhat labored breathing and a drop in alertness. He also had a slight fever in the just under 100 degree range.
My daughter Eva was sleeping over with my mom and dad on Saturday night. As he has done frequently since having the problems leading to the stent, he was sleeping downstairs in a chair. During the early morning hours, after Eva was asleep, my mom heard my dad call for her. She came downstairs and found my dad on the floor with blood everywhere. My dad remembers clearly what happened, and told me today that he had tried to walk to the bathroom but fell. He tried to get up and then fell again, this time hitting his head on the door to the bathroom. While telling the story, he smiled and said "after the second time, I figured I should ask for help." The blood was from the cut on his head. My mom stayed downstairs for the rest of the night, staying awake to keep watch over him. Thankfully, Eva slept through this and only saw a somewhat cleaned up scene when she awoke.
Eva's mom Margaret is my ex-wife, but over the past few years she has become best friends with my current wife Dana and we have been blessed with a strong co-parenting relationship. My mom called me in the morning, before Eva awoke, and after briefly speaking with Dana, we called Margaret. There was a little difficulty reaching her (understandable, she is remarried and has a newborn baby and was probably enjoying the hour or two of sleep her newborn affords her). After a little delay, she got the message and quickly called. She got right in the car and picked up Eva. Eva was well aware that her papa had fallen and was experiencing a turn for the worse, and her mom spent most of the day comforting Eva and crying together with her (Margaret has known my dad for almost 20 years).
I was out of town with Dana and scheduled to come back late Monday. However, it was Sunday and I was going back and forth by phone with my mom as to whether to return early. I told her that the only priority was honoring her wishes and my dad's wishes, and doing what would make things easier for them. She said she did not want me to come back yet, but she would let me know if that changed. She was holding off on calling Dr. Flam because she did not want to wake him so early on a holiday Sunday. I strongly encouraged her to just wake him up (if you're reading this, Dr. Flam, thank you for taking the early call). She did wake him up, but he did not seem to mind. He said to hold off on going to the hospital and just monitor him for changes. I asked my mom to call me immediately when anything changed. I'm afraid I didn't give her quite that much courtesy, though, since I called her a few times just to check in (although to be fair, my cell coverage was spotty so I wanted to make sure she hadn't called and failed to get through).
Some time later that day (probably mid-afternoon, but it is kind of a blur) she called to say she was in the car going to the hospital with my dad and Herb Boro. Basically my dad's temperature had gone to just shy of 101 degrees, which I am told for patients in my dad's condition is a level indicating possible serious problems (as we learned later, probably sepsis). I asked whether I should drive home but my mom said I should hold off. She didn't think things were critical at that point and she said she without a diagnosis of an imminent medical problem, she didn't want me driving home with my wife and two younger daughters at night. I said OK.
Around dinner time, perhaps a bit later, my mom called saying that my dad was not going to just be admitted, but was going to be sent to either the cardiac ward or the ICU. His heart rate was ranging between 110 and 130 and his blood pressure was way up and down. He had also seen his fever rise to 103 degrees. At this point I was gripped with uncertainty and self-doubt. I could drive home right away, but if things progressed even linearly, he would be unconscious or worse by the time I got there (it was about a 4 hour drive). My mom hadn't slept on Saturday night for more than an hour or two, and was heading into a Sunday night without sleep. My mom said the best thing was for me to rest and return in the morning. I went with her request and decided to try to sleep and drive in very early on Monday morning. My thinking was that the best thing I could do was arrive ready to relieve my mom so she could sleep. If I drove home right away, my mom and I would both be going into Monday with no sleep, and if things continued to worsen, we might both start to have our function impaired by lack of sleep some time in Tuesday's early morning hours.
It was the worst feeling I've ever had going to sleep. I was going to sleep knowing that my dad might pass away before morning. I had two dreams that I can recall that night. In one of them, my dad called to say hi and I stopped him after a few sentences and said "dad, you're ok!". In the other dream, it was morning and my dad had stabilized. I woke up well before the alarm and was gripped by a need to know how my dad was. The phone hadn't gone off during the night, so my worst fears hadn't been realized. I hoped that my dad had stabilized enough that my mom was able to sleep for a few hours. I didn't want to wake her, so I painfully waited for an hour before calling her.
I know that the portion of the story I just told is entirely unlike the other blog entries -- it is told from my perspective, and focuses on the experience of trying to react when a loved one is hurting. It is one thing to say that you should expect to make hard choices, have ambiguous feelings about the choices you make, and force yourself to do what you think, on balance, is best for the well being of your loved ones even if it is hard for you. It is quite another to live the experience. I laid out my decisions, the reasons for them and the ambiguity because even if I got it wrong or others would have done it differently, I think it is important for people caring for people in my dad's situation know that they aren't alone in making decisions that reflect their best guess, based on limited facts, about the right thing to do. Had the worst come to pass while I slept, I would surely have felt guilt that I made the wrong decision. I was lucky, or (I hope) rationally reached the right decision in that I arrived sad but rested and I was able to provide the love and support that my parents both needed after a truly awful night. Caregivers, you are not alone in repeatedly rethinking the decision you made that you thought 60% likely to be the right one. Be guided by your love for others rather than your own needs and at least you can tell yourself "I honored the wishes of my loved ones, and took the path I thought was most likely to do right by them."
I jumped a bit ahead in my effort to keep contiguous the portion of the post about the decision to return sufficiently rested to help rather than return 8 hours earlier. So I'll rewind to Sunday evening. I had held it together really well, talking my mom through some of decisions she faced, trying to figure out the right thing to do, even packing up so I could leave without delay in the morning. Dana had been offering to hug me for hours but I just needed to talk with her, and we talked until I'm sure she was well past the point of exhaustion -- but she is an angel and never let on. I was talking to Dana when mid-sentence I said "I need that hug now", she held me in her arms, and I cried. I wish I was better at crying when I need to, because it really helped. Dana made it safe to cry and I did. I realize now how strange it was that my ex-wife was holding my daughter and crying together about my dad probably at the same time as my current wife was holding me and crying together about my dad. Strange, but in a positive way.
While I was driving home, I talked a couple of times with my mom. She told me of the harrowing night they had. Essentially, she was up with my dad all night. They finally got him settled in the ICU and transfused him with 2 units of whole blood, at which point he improved a bit (the platelets they gave him earlier in the process may have helped, but if they did help, they didn't help enough). They had him on IV antibiotics, and that also helped. She was exhausted, and neither parent had slept that night.
I learned something else during that drive that completely surprised me: People don't normally have a copy of their advance medical directive document available. The doctors had asked if there was an advance medical directive, and in the middle of the night my mom was only able to say "yes, at the lawyer's office". Indeed, my dad's was at his lawyer's office (along with mine). We had all made the mistake of not making sure our loved ones had copies of our advance medical directive available. I don't know why I didn't realize that illnesses don't always strike when law firms are open, and that even keeping a single copy in one person's file cabinet doesn't mean that the person who will need it can get it. Luckily, the will was done by the same firm where a terrific person, lawyer, and friend works (Ken Price). I emailed the three lawyers I knew well at that firm, and despite the pretty early hour got a prompt reply from Ken. Of course (as I should have known after doing that whole law school/bar exam thing), the complication was that my mom was the person named to make medical decisions, so only she could approve the release of the document. Ken had the document scanned to a PDF and emailed it to my mom. She forwarded it to me and I printed it when I got home. Lessons here? Give copies of your advance medical directive to anybody who might need it, and realize that even if you have terrific, responsive lawyers they might be ethically limited in their ability to rapidly get you a copy.
I got in the car, copy of the advance medical directive in hand, and drove to the hospital. My mom was home resting and eating a meal. When I got there, I walked in and held my dad's hand. It had only been 24 hours since that first call, but it felt like I had spent a month on the trek there. I didn't let go of his hand for what seemed like an hour (likely about a minute), and in that moment he was my daddy and I was his little boy. I wished with all my heart for my daddy to be better. I looked up, told him I love him, and took a seat next to him.
He had beard stubble, was thinner than when I last saw him, but his eyes were alive. Not just literally alive, but *** alive *** in the way that all humans recognize as the sign that somebody is really there, ready to engage with the world. His body was suffering, but he was still very much himself. I suspect I had been breathing for the minutes leading up to that realization, but I felt like like it was the first time I exhaled all day.
We spent hours talking or just sitting with each other. My mom arrived, and the three of us just talked and enjoyed each other. As you can guess from his blog entries, my dad doesn't keep that much secret. My dad wasn't able to drink easily, and his mouth was very dry. As a result, his voice was crackly and quiet. He turns to me and says "Gary, I've got something I want to say to you". My mom kind of looked up and asked him "is this something I should be here for". He said "no, just Gary". I thought, "this is like one of those moments in the movies where the patriarch leans over and in a weak but firm voice and shares something of great importance." My mom walked out and I leaned in to hear every word. My dad looked in my eyes and said "so here is what I want you to write on my blog...." He proceeded to lay out his thoughts. At first I thought that this was one of those funny moments in a really tense setting where you've misunderstood a fundamental thing. But then it dawned on me that this blog has been an amazing resource to those suffering with similar afflictions, to his family and friends who get to see his wit and learn new things about him with each entry, and to himself in a cathartic way. So it was in fact a moment of immense importance for us -- he had entrusted me with writing an entry in a document of true importance in his life. He shared what I wrote below, but (to again take things out of sequence), we did share some intimate thoughts outside of the blog before my mom returned.
So this blog entry is very much dictated but not read. I listened carefully to what he said, and this is my best shot at conveying it.
He told me that he was very depressed last night, feeling that there wasn't hope for him. But today he has a ray of hope. He said his brain function "is not that great right now", but he is more optimistic based on the fact that we don't yet know if the chemo worked, and it may well have worked. He then laid out two scenarios:
The optimistic scenario: The chemo worked. In a few days he finds out that it worked and the stent comes out, he goes home, he has a chance to beat this thing.
The pessimistic scenario: The chemo didn't work. In a few days he finds out that it did not work and there is not much hope.
He says that everything is based on whether the chemo worked. I then asked him whether there was a third scenario, a middle ground where the chemo didn't work, but he feels better for a time. He doesn't get more chemo, but with pain management he is able to go home and enjoy some quality time before he passes away. He agreed that the middle ground scenario was possible and agreed that I should add it to his blog entry.
As for his current status, his blood pressure is still relatively low (88/50 earlier, but when I left it was around 80/50). I believe his ability to concentrate was cycling with drops in blood pressure, but that might just have been coincidental (he hasn't slept a reasonable amount in couple of days so there are plenty of reasons he might have trouble concentrating). They gave him IV steroids just before I left to try to raise his blood pressure. The risk is a secondary fungal infection, but they said that his blood pressure was just too low and they could control the risk with anti-fungals.
They confirmed that he had sepsis. Blood drawn yesterday was cultured and showed gram positive cocci in clusters. They continue to give him antibiotics, although they're going to monitor his renal function since the antibiotics can create renal function issues.
It turns out that the ICU has a rule that between 7:00 (am and pm) and 8:30 (am and pm, respectively), no visitors can be present. This is to allow the staff to brief each other more effectively during the shift change. We were sent home at 7:00 pm, and my dad indicated that we should come back in the morning. I asked the nurse to call me if he thought that my being there overnight would improve the treatment outlook, and he promised he would. He hasn't called yet, and assuming I don't get a call I'll return to the hospital after the morning shift change.
My dad remains cognitively strong, and the observation he made about his "brain function" being "not that great now", I'm convinced that it is due to difficulty remaining fully awake. When he does focus in, he's sharp as ever. His hands shake when he reaches for things. He is not getting IV nutrition, but he is on a liquid diet and has no desire to eat it. They probably put him back on IV nutrition tomorrow. His temperature is more or less normal (perhaps slightly high, like 99.2 or so). The nurse was laying out the treatment plan for the next few days, which is a signal that at this point the nurse is thinking things are improving.
I hope that my dad is well enough to post for himself soon, but while we wait for that I will do my best to take his dictation.
I know I led off with this, but it is important enough to repeat: My dad is truly appreciative of all of the support.
He has his iPhone with him and is reading email at times when his concentration is good. He may not have time or the concentration to reply to emails, but rest assured that they are reaching him.
-- Gary Shuster
He first asked me to express his deep appreciation for the support he has received from all of you.
He then asked me to share his current status.
Since his last post, his energy had declined. He was given a week of chemo as planned, but then his cell counts became too low to continue. The new plan was to take a week off and then restart. During this time, he was in significant pain (seemingly from the stent, but there was some generalized pain). There were plans for him to have the stent removed on Tuesday and replaced (if necessary) by a smaller stent. The plans were worked out late in the week, but given the long weekend the surgery was scheduled for Tuesday. He was given a 72 hour Fentanyl patch for the pain. My mom changed the patch on Saturday, and a few hours into the second patch, he began to experience shallow, somewhat labored breathing and a drop in alertness. He also had a slight fever in the just under 100 degree range.
My daughter Eva was sleeping over with my mom and dad on Saturday night. As he has done frequently since having the problems leading to the stent, he was sleeping downstairs in a chair. During the early morning hours, after Eva was asleep, my mom heard my dad call for her. She came downstairs and found my dad on the floor with blood everywhere. My dad remembers clearly what happened, and told me today that he had tried to walk to the bathroom but fell. He tried to get up and then fell again, this time hitting his head on the door to the bathroom. While telling the story, he smiled and said "after the second time, I figured I should ask for help." The blood was from the cut on his head. My mom stayed downstairs for the rest of the night, staying awake to keep watch over him. Thankfully, Eva slept through this and only saw a somewhat cleaned up scene when she awoke.
Eva's mom Margaret is my ex-wife, but over the past few years she has become best friends with my current wife Dana and we have been blessed with a strong co-parenting relationship. My mom called me in the morning, before Eva awoke, and after briefly speaking with Dana, we called Margaret. There was a little difficulty reaching her (understandable, she is remarried and has a newborn baby and was probably enjoying the hour or two of sleep her newborn affords her). After a little delay, she got the message and quickly called. She got right in the car and picked up Eva. Eva was well aware that her papa had fallen and was experiencing a turn for the worse, and her mom spent most of the day comforting Eva and crying together with her (Margaret has known my dad for almost 20 years).
I was out of town with Dana and scheduled to come back late Monday. However, it was Sunday and I was going back and forth by phone with my mom as to whether to return early. I told her that the only priority was honoring her wishes and my dad's wishes, and doing what would make things easier for them. She said she did not want me to come back yet, but she would let me know if that changed. She was holding off on calling Dr. Flam because she did not want to wake him so early on a holiday Sunday. I strongly encouraged her to just wake him up (if you're reading this, Dr. Flam, thank you for taking the early call). She did wake him up, but he did not seem to mind. He said to hold off on going to the hospital and just monitor him for changes. I asked my mom to call me immediately when anything changed. I'm afraid I didn't give her quite that much courtesy, though, since I called her a few times just to check in (although to be fair, my cell coverage was spotty so I wanted to make sure she hadn't called and failed to get through).
Some time later that day (probably mid-afternoon, but it is kind of a blur) she called to say she was in the car going to the hospital with my dad and Herb Boro. Basically my dad's temperature had gone to just shy of 101 degrees, which I am told for patients in my dad's condition is a level indicating possible serious problems (as we learned later, probably sepsis). I asked whether I should drive home but my mom said I should hold off. She didn't think things were critical at that point and she said she without a diagnosis of an imminent medical problem, she didn't want me driving home with my wife and two younger daughters at night. I said OK.
Around dinner time, perhaps a bit later, my mom called saying that my dad was not going to just be admitted, but was going to be sent to either the cardiac ward or the ICU. His heart rate was ranging between 110 and 130 and his blood pressure was way up and down. He had also seen his fever rise to 103 degrees. At this point I was gripped with uncertainty and self-doubt. I could drive home right away, but if things progressed even linearly, he would be unconscious or worse by the time I got there (it was about a 4 hour drive). My mom hadn't slept on Saturday night for more than an hour or two, and was heading into a Sunday night without sleep. My mom said the best thing was for me to rest and return in the morning. I went with her request and decided to try to sleep and drive in very early on Monday morning. My thinking was that the best thing I could do was arrive ready to relieve my mom so she could sleep. If I drove home right away, my mom and I would both be going into Monday with no sleep, and if things continued to worsen, we might both start to have our function impaired by lack of sleep some time in Tuesday's early morning hours.
It was the worst feeling I've ever had going to sleep. I was going to sleep knowing that my dad might pass away before morning. I had two dreams that I can recall that night. In one of them, my dad called to say hi and I stopped him after a few sentences and said "dad, you're ok!". In the other dream, it was morning and my dad had stabilized. I woke up well before the alarm and was gripped by a need to know how my dad was. The phone hadn't gone off during the night, so my worst fears hadn't been realized. I hoped that my dad had stabilized enough that my mom was able to sleep for a few hours. I didn't want to wake her, so I painfully waited for an hour before calling her.
I know that the portion of the story I just told is entirely unlike the other blog entries -- it is told from my perspective, and focuses on the experience of trying to react when a loved one is hurting. It is one thing to say that you should expect to make hard choices, have ambiguous feelings about the choices you make, and force yourself to do what you think, on balance, is best for the well being of your loved ones even if it is hard for you. It is quite another to live the experience. I laid out my decisions, the reasons for them and the ambiguity because even if I got it wrong or others would have done it differently, I think it is important for people caring for people in my dad's situation know that they aren't alone in making decisions that reflect their best guess, based on limited facts, about the right thing to do. Had the worst come to pass while I slept, I would surely have felt guilt that I made the wrong decision. I was lucky, or (I hope) rationally reached the right decision in that I arrived sad but rested and I was able to provide the love and support that my parents both needed after a truly awful night. Caregivers, you are not alone in repeatedly rethinking the decision you made that you thought 60% likely to be the right one. Be guided by your love for others rather than your own needs and at least you can tell yourself "I honored the wishes of my loved ones, and took the path I thought was most likely to do right by them."
I jumped a bit ahead in my effort to keep contiguous the portion of the post about the decision to return sufficiently rested to help rather than return 8 hours earlier. So I'll rewind to Sunday evening. I had held it together really well, talking my mom through some of decisions she faced, trying to figure out the right thing to do, even packing up so I could leave without delay in the morning. Dana had been offering to hug me for hours but I just needed to talk with her, and we talked until I'm sure she was well past the point of exhaustion -- but she is an angel and never let on. I was talking to Dana when mid-sentence I said "I need that hug now", she held me in her arms, and I cried. I wish I was better at crying when I need to, because it really helped. Dana made it safe to cry and I did. I realize now how strange it was that my ex-wife was holding my daughter and crying together about my dad probably at the same time as my current wife was holding me and crying together about my dad. Strange, but in a positive way.
While I was driving home, I talked a couple of times with my mom. She told me of the harrowing night they had. Essentially, she was up with my dad all night. They finally got him settled in the ICU and transfused him with 2 units of whole blood, at which point he improved a bit (the platelets they gave him earlier in the process may have helped, but if they did help, they didn't help enough). They had him on IV antibiotics, and that also helped. She was exhausted, and neither parent had slept that night.
I learned something else during that drive that completely surprised me: People don't normally have a copy of their advance medical directive document available. The doctors had asked if there was an advance medical directive, and in the middle of the night my mom was only able to say "yes, at the lawyer's office". Indeed, my dad's was at his lawyer's office (along with mine). We had all made the mistake of not making sure our loved ones had copies of our advance medical directive available. I don't know why I didn't realize that illnesses don't always strike when law firms are open, and that even keeping a single copy in one person's file cabinet doesn't mean that the person who will need it can get it. Luckily, the will was done by the same firm where a terrific person, lawyer, and friend works (Ken Price). I emailed the three lawyers I knew well at that firm, and despite the pretty early hour got a prompt reply from Ken. Of course (as I should have known after doing that whole law school/bar exam thing), the complication was that my mom was the person named to make medical decisions, so only she could approve the release of the document. Ken had the document scanned to a PDF and emailed it to my mom. She forwarded it to me and I printed it when I got home. Lessons here? Give copies of your advance medical directive to anybody who might need it, and realize that even if you have terrific, responsive lawyers they might be ethically limited in their ability to rapidly get you a copy.
I got in the car, copy of the advance medical directive in hand, and drove to the hospital. My mom was home resting and eating a meal. When I got there, I walked in and held my dad's hand. It had only been 24 hours since that first call, but it felt like I had spent a month on the trek there. I didn't let go of his hand for what seemed like an hour (likely about a minute), and in that moment he was my daddy and I was his little boy. I wished with all my heart for my daddy to be better. I looked up, told him I love him, and took a seat next to him.
He had beard stubble, was thinner than when I last saw him, but his eyes were alive. Not just literally alive, but *** alive *** in the way that all humans recognize as the sign that somebody is really there, ready to engage with the world. His body was suffering, but he was still very much himself. I suspect I had been breathing for the minutes leading up to that realization, but I felt like like it was the first time I exhaled all day.
We spent hours talking or just sitting with each other. My mom arrived, and the three of us just talked and enjoyed each other. As you can guess from his blog entries, my dad doesn't keep that much secret. My dad wasn't able to drink easily, and his mouth was very dry. As a result, his voice was crackly and quiet. He turns to me and says "Gary, I've got something I want to say to you". My mom kind of looked up and asked him "is this something I should be here for". He said "no, just Gary". I thought, "this is like one of those moments in the movies where the patriarch leans over and in a weak but firm voice and shares something of great importance." My mom walked out and I leaned in to hear every word. My dad looked in my eyes and said "so here is what I want you to write on my blog...." He proceeded to lay out his thoughts. At first I thought that this was one of those funny moments in a really tense setting where you've misunderstood a fundamental thing. But then it dawned on me that this blog has been an amazing resource to those suffering with similar afflictions, to his family and friends who get to see his wit and learn new things about him with each entry, and to himself in a cathartic way. So it was in fact a moment of immense importance for us -- he had entrusted me with writing an entry in a document of true importance in his life. He shared what I wrote below, but (to again take things out of sequence), we did share some intimate thoughts outside of the blog before my mom returned.
So this blog entry is very much dictated but not read. I listened carefully to what he said, and this is my best shot at conveying it.
He told me that he was very depressed last night, feeling that there wasn't hope for him. But today he has a ray of hope. He said his brain function "is not that great right now", but he is more optimistic based on the fact that we don't yet know if the chemo worked, and it may well have worked. He then laid out two scenarios:
The optimistic scenario: The chemo worked. In a few days he finds out that it worked and the stent comes out, he goes home, he has a chance to beat this thing.
The pessimistic scenario: The chemo didn't work. In a few days he finds out that it did not work and there is not much hope.
He says that everything is based on whether the chemo worked. I then asked him whether there was a third scenario, a middle ground where the chemo didn't work, but he feels better for a time. He doesn't get more chemo, but with pain management he is able to go home and enjoy some quality time before he passes away. He agreed that the middle ground scenario was possible and agreed that I should add it to his blog entry.
As for his current status, his blood pressure is still relatively low (88/50 earlier, but when I left it was around 80/50). I believe his ability to concentrate was cycling with drops in blood pressure, but that might just have been coincidental (he hasn't slept a reasonable amount in couple of days so there are plenty of reasons he might have trouble concentrating). They gave him IV steroids just before I left to try to raise his blood pressure. The risk is a secondary fungal infection, but they said that his blood pressure was just too low and they could control the risk with anti-fungals.
They confirmed that he had sepsis. Blood drawn yesterday was cultured and showed gram positive cocci in clusters. They continue to give him antibiotics, although they're going to monitor his renal function since the antibiotics can create renal function issues.
It turns out that the ICU has a rule that between 7:00 (am and pm) and 8:30 (am and pm, respectively), no visitors can be present. This is to allow the staff to brief each other more effectively during the shift change. We were sent home at 7:00 pm, and my dad indicated that we should come back in the morning. I asked the nurse to call me if he thought that my being there overnight would improve the treatment outlook, and he promised he would. He hasn't called yet, and assuming I don't get a call I'll return to the hospital after the morning shift change.
My dad remains cognitively strong, and the observation he made about his "brain function" being "not that great now", I'm convinced that it is due to difficulty remaining fully awake. When he does focus in, he's sharp as ever. His hands shake when he reaches for things. He is not getting IV nutrition, but he is on a liquid diet and has no desire to eat it. They probably put him back on IV nutrition tomorrow. His temperature is more or less normal (perhaps slightly high, like 99.2 or so). The nurse was laying out the treatment plan for the next few days, which is a signal that at this point the nurse is thinking things are improving.
I hope that my dad is well enough to post for himself soon, but while we wait for that I will do my best to take his dictation.
I know I led off with this, but it is important enough to repeat: My dad is truly appreciative of all of the support.
He has his iPhone with him and is reading email at times when his concentration is good. He may not have time or the concentration to reply to emails, but rest assured that they are reaching him.
-- Gary Shuster
Sunday, February 12, 2012
Another "The Short of It"
Because I still am not up to writing "The Long Of It"
I have been home since last Wednesday when the Topotican was started, as a continuous drip. I am able to swallow with the stent, albeit not without pain. The pain has been controlled with Vicodin needing less and less, but still needing it at bedtime. I am sleeping better, but not well. At night and at other times as needed, Marinol was prescribed. It is basically synthetic marijuana, supposedly without the psychotropic effects but with the anti nausea properties. So far, it does make me drowsy and does reduce nausea.
Although I am able to eat, I have no desire to do so. I have to force myself to eat food, and I am still on the TPN. I have not had a bowel movement in about a week, but I do pass gas. Sometimes I burp up feculent gas.
Listening to the Grammies tonight, I notice that my hearing is again deteriorating. I am also noting more neuropathy in my feet.
I continue to have shortness of breath and coughing while trying to speak.
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.
I hope to have the energy to post again, likely Wednesday after I see Dr. Flam.
Goodbye Whitney.
We will always love you. YouTubeVideo
I have been home since last Wednesday when the Topotican was started, as a continuous drip. I am able to swallow with the stent, albeit not without pain. The pain has been controlled with Vicodin needing less and less, but still needing it at bedtime. I am sleeping better, but not well. At night and at other times as needed, Marinol was prescribed. It is basically synthetic marijuana, supposedly without the psychotropic effects but with the anti nausea properties. So far, it does make me drowsy and does reduce nausea.
Although I am able to eat, I have no desire to do so. I have to force myself to eat food, and I am still on the TPN. I have not had a bowel movement in about a week, but I do pass gas. Sometimes I burp up feculent gas.
Listening to the Grammies tonight, I notice that my hearing is again deteriorating. I am also noting more neuropathy in my feet.
I continue to have shortness of breath and coughing while trying to speak.
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.
I hope to have the energy to post again, likely Wednesday after I see Dr. Flam.
Goodbye Whitney.
We will always love you. YouTubeVideo
Monday, February 6, 2012
Too sick to post much
I can't put coherent thoughts together to post. Today, I will see Dr Flam and decide whether to start Topotecan today or delay a few days. The stent is working but I have no desire to eat. Lots of pain, but getting better. Nausea. No desire to eat even though the food goes down. Still on IV nutrition.
Thursday, February 2, 2012
The Short Of It
Last night, I did have a fairly decent nights sleep, for me. At least I was able to sleep in bed, and not in a chair. The IV feeding ran during the night. However, today, the Boost Plus is not going down easily.
I had my visit with Dr. Flam yesterday afternoon. We had conversations with Dr. Nghiem and Dr. Lewis during this visit. Dr. Flam wants me to start chemotherapy again and made a compelling case for it. He wanted me to begin as soon as today and felt that that would open my esophagus so I could begin eating again. However it would take some time for this and I am in too much distress to wait for this. Dr. Nghiem suggested injecting the esophagus tumor with Beta Interferon endoscopically and then giving radiation to the area of 8 Gy. The second mass near the gastrohepatic ligament might also be treated in similar fashion. However, my esophagus has already had 56 Gy and this is getting close to the maximum. We decided to hold that approach for the time being. I did not want to have any more cisplatin as I want to preserve my hearing and my peripheral neuropathy has not improved and at times is quite uncomfortable.
The plan now is as follows.
Tomorrow, Dr. Lewis will insert a removable stent. Stent Review Article On Monday I will begin chemotherapy with a drug called Topotecan. Information about Topotecan
The drug will be administered by continuous infusion for 5 days, and repeated after 2 weeks off. I don't know how many cycles will be used, presumably this depends on the response.
The drug is available to be taken orally. Perhaps after the first cycle, if my swallowing function has improved, I will be able to do that. More on Topotecan
Nobody discussed the response rate with me, but it seems to be in the 25-40% range, with only rare complete remissions.
I had my visit with Dr. Flam yesterday afternoon. We had conversations with Dr. Nghiem and Dr. Lewis during this visit. Dr. Flam wants me to start chemotherapy again and made a compelling case for it. He wanted me to begin as soon as today and felt that that would open my esophagus so I could begin eating again. However it would take some time for this and I am in too much distress to wait for this. Dr. Nghiem suggested injecting the esophagus tumor with Beta Interferon endoscopically and then giving radiation to the area of 8 Gy. The second mass near the gastrohepatic ligament might also be treated in similar fashion. However, my esophagus has already had 56 Gy and this is getting close to the maximum. We decided to hold that approach for the time being. I did not want to have any more cisplatin as I want to preserve my hearing and my peripheral neuropathy has not improved and at times is quite uncomfortable.
The plan now is as follows.
Tomorrow, Dr. Lewis will insert a removable stent. Stent Review Article On Monday I will begin chemotherapy with a drug called Topotecan. Information about Topotecan
The drug will be administered by continuous infusion for 5 days, and repeated after 2 weeks off. I don't know how many cycles will be used, presumably this depends on the response.
The drug is available to be taken orally. Perhaps after the first cycle, if my swallowing function has improved, I will be able to do that. More on Topotecan
Nobody discussed the response rate with me, but it seems to be in the 25-40% range, with only rare complete remissions.
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