Kevin here.
Michael is home today, and we're hoping for an uneventful weekend. If you have the desire to stop by and wish him well, call first - he has a lot of sleep to catch up on.
More appointments in a week to check on things like kidney function, and sometime soon he'll get a PET/CT to assess progress of the cancer, but for now, we're just enjoying little things like a real bed and real food.
- Kevin
Friday, May 25, 2012
Wednesday, May 23, 2012
Scanners on full
Kevin here.
Sorry for the intermittent updates. I don't write them at the hospital, preferring to spend my time with Mike when I'm there.
As of Wednesday afternoon, what we know:
Michael is still in the hospital. For those keeping score at home, this marks the 23rd consecutive day of being in a hospital, although there was a brief break last Thursday, where he got to be checked out and spend part of the night at home. Only to come back in on Friday morning to get checked in again.
Which sucks. In a really huge way. I'm not sure I understand how much it sucks to be in that place, where your own body is trying to kill you, and parts of you are failing. Mike described this in a text message last week, during the first leg of this stay:
Several reasons. Fair warning: medical details follow.
He has two infections, or perhaps the same infection in two places. He has an E Coli infection in both urine and blood, indicating that it's fairly serious. The blood part is minor, as these things go - the doctor we talked to today talked about a spectrum of various degrees of blood infection, with some serious shit at the top end. Mike's near the bottom, but this is still something they take seriously, with IV antibiotics for multiple days. He'll also likely have oral antibiotics for multiple days after the IV.
He's also having a lot of trouble breathing, and thus far the doctors aren't seeing something that explains the breathing troubles he's having, so the first of his two scans today was a CAT scan aimed at trying to get an image of his lungs. When we get that, we may know more about the amount of tumor growth, but the real data is on the other side of a PET/CT scan, which the doctors haven't ordered thus far. Being on oxygen all the time sucks for a variety of reasons, but it's better than suffocating.
The second scan was done in Nuclear Medicine, and was a scan aimed at his right kidney, to make sure that the double-j stent they put in almost two weeks ago is still working, because he's not urinating. At all. His "perc neph" which is the drain they installed in his left kidney, also about two weeks ago, is working just fine, and he's pretty much blood-free, which is a very nice change. But still, that's a problem.
He's also retaining a lot of fluid in his legs - a condition called edema - which again, is moderately confusing to the doctors, since there is not currently any clotting going on that would explain the retention of water.
And he's not up and walking, since all of this is going on, and his back still hurts like hell from the degenerative disc condition, and so on.
We're aiming at Friday, because that's when the IV antibiotics will have run their course. Things may change between now and Friday, of course, but from what we know now, it's a good target.
- Kevin
Sorry for the intermittent updates. I don't write them at the hospital, preferring to spend my time with Mike when I'm there.
As of Wednesday afternoon, what we know:
Michael is still in the hospital. For those keeping score at home, this marks the 23rd consecutive day of being in a hospital, although there was a brief break last Thursday, where he got to be checked out and spend part of the night at home. Only to come back in on Friday morning to get checked in again.
Which sucks. In a really huge way. I'm not sure I understand how much it sucks to be in that place, where your own body is trying to kill you, and parts of you are failing. Mike described this in a text message last week, during the first leg of this stay:
...it feels like I'm made of duct tape and cardboard, and they're just trying to patch me up while another bit starts to fail.So, why is he still in the hospital?
Several reasons. Fair warning: medical details follow.
He has two infections, or perhaps the same infection in two places. He has an E Coli infection in both urine and blood, indicating that it's fairly serious. The blood part is minor, as these things go - the doctor we talked to today talked about a spectrum of various degrees of blood infection, with some serious shit at the top end. Mike's near the bottom, but this is still something they take seriously, with IV antibiotics for multiple days. He'll also likely have oral antibiotics for multiple days after the IV.
He's also having a lot of trouble breathing, and thus far the doctors aren't seeing something that explains the breathing troubles he's having, so the first of his two scans today was a CAT scan aimed at trying to get an image of his lungs. When we get that, we may know more about the amount of tumor growth, but the real data is on the other side of a PET/CT scan, which the doctors haven't ordered thus far. Being on oxygen all the time sucks for a variety of reasons, but it's better than suffocating.
The second scan was done in Nuclear Medicine, and was a scan aimed at his right kidney, to make sure that the double-j stent they put in almost two weeks ago is still working, because he's not urinating. At all. His "perc neph" which is the drain they installed in his left kidney, also about two weeks ago, is working just fine, and he's pretty much blood-free, which is a very nice change. But still, that's a problem.
He's also retaining a lot of fluid in his legs - a condition called edema - which again, is moderately confusing to the doctors, since there is not currently any clotting going on that would explain the retention of water.
And he's not up and walking, since all of this is going on, and his back still hurts like hell from the degenerative disc condition, and so on.
We're aiming at Friday, because that's when the IV antibiotics will have run their course. Things may change between now and Friday, of course, but from what we know now, it's a good target.
- Kevin
Sunday, May 20, 2012
Blood work
Kevin again.
We now know the reason for the shakes Michael was having Friday morning: he has an E. Coli infection in his blood. According to the infectious disease doc, this is not surprising given the number of surgeries he had. They actually had pretty much figured this out on Saturday, but at that point all they were sure of was that there was a "gram-negative rod bacillus" in his blood. Bacteria take longer to show up in bloodwork, since you have to culture them -- as the doc said "they have to grow before you can figure out what they are."
We also know that these bacteria are resistant to the antibiotic they gave Michael on Saturday. Boo! But it turns out that the antibiotic they gave him on Friday is the right one. Yay!
The course of action is 7 days of treatment with Rocephin (the new antibiotic), which has to be administered intravenously. Fortunately, that does not mean Michael has to stay in the hospital for 7 days - he can do IV drugs at home, probably with the help of a home health aide. We still don't have an ETA for his release, but we're hoping that tomorrow will bring a consultation with the hospitalist and a plan for getting home.
He's looking good, although still very fatigued and in a lot of pain from his lower back, which is aggravated by lying in a hospital bed. Putting on a pair of sweatpants is enough effort that it leaves him trying to catch his breath, which is worrying.
Once he does get home, he needs to get back in for a PET/CT scan to assess progress of the cancer; that apparently can't be done as part of his hospital stay but needs to be done outpatient after he's released. American healthcare is wonderful, but our insurance system is pretty screwed up.
- Kevin
We now know the reason for the shakes Michael was having Friday morning: he has an E. Coli infection in his blood. According to the infectious disease doc, this is not surprising given the number of surgeries he had. They actually had pretty much figured this out on Saturday, but at that point all they were sure of was that there was a "gram-negative rod bacillus" in his blood. Bacteria take longer to show up in bloodwork, since you have to culture them -- as the doc said "they have to grow before you can figure out what they are."
We also know that these bacteria are resistant to the antibiotic they gave Michael on Saturday. Boo! But it turns out that the antibiotic they gave him on Friday is the right one. Yay!
The course of action is 7 days of treatment with Rocephin (the new antibiotic), which has to be administered intravenously. Fortunately, that does not mean Michael has to stay in the hospital for 7 days - he can do IV drugs at home, probably with the help of a home health aide. We still don't have an ETA for his release, but we're hoping that tomorrow will bring a consultation with the hospitalist and a plan for getting home.
He's looking good, although still very fatigued and in a lot of pain from his lower back, which is aggravated by lying in a hospital bed. Putting on a pair of sweatpants is enough effort that it leaves him trying to catch his breath, which is worrying.
Once he does get home, he needs to get back in for a PET/CT scan to assess progress of the cancer; that apparently can't be done as part of his hospital stay but needs to be done outpatient after he's released. American healthcare is wonderful, but our insurance system is pretty screwed up.
- Kevin
Saturday, May 19, 2012
One step forward, two steps back
Kevin again.
As it turns out, Michael spent less than a day at home. We got him home Thursday afternoon, and he and Jen settled in for a restful evening of mac & cheese and TV watching. He was running a fever, but that's not unusual for someone who's had four surgeries in the past two weeks and whose immune response has been knocked down by chemotherapy and kidney issues. Jen called in, and they removed the cap on his perc neph.
The real problem started about 3am Friday morning, when Michael woke up with problems breathing. He asked Jen to turn up the flow rate on his oxygen, but could not catch his breath, even with the maximum 5 liters/minute that his home unit can deliver. So off to the ER they went, to spend a couple of hours being monitored. Tests showed an elevated white blood cell count, consistent with the mild infection issues noted above, which confirms that suspicion.
After a couple of hours, things cleared up, and Michael felt okay again, so they went back home... and about 11am, it happened again, after Michael took a nap. So, back to the ER, where he spent the afternoon, before being checked in for observation. So he's back at Abbott, on the oncology observation ward. We're hoping it's just for the weekend, and that we can figure out what's up.
We don't know what's wrong. I guess in a general sense, we do -- he has cancer -- but what's triggering these specific episodes is a mystery. Mom thinks he's having an allergic reaction to his dog, Jen thinks it might be related to the fact that he was actually sleeping on his back and the fluid in his lungs may be pooling differently (in 16 days of hospital time, aside from never getting a full night's sleep, he also had never laid fully flat, due to the nature of the hospital bed. I have no theories, but I think Jen's sounds good. And I think it's worth getting a good air filter and doing a deep cleaning on his house to get rid of pet hair and the like, because even if he's not having an allergic reaction, having lots of particulate matter in the air is bad for people with breathing issues.
Have I mentioned that Jen is the most amazing person I think I've ever met? I am so very glad that Michael and she found one another - true love is a rare and precious thing.
- Kevin
Thursday, May 17, 2012
Home.
Kevin again.
Mike is home. After sixteen days at Abbott, HOME.
We were very glad to say goodbye to the nurses in the Critical Observation Oncology ward, but not because they weren't awesome - they were great. It's just that the hospital isn't someplace you choose to be unless you work there.
Oxygen is down to 2L/minute, and he has a prescription for the portable concentrator, which should give him much greater mobility than carrying tanks. We may test that out tomorrow.
Blood counts are nearly normal, and he's almost entirely free of tubes - one remaining from the "perc neph" but that's supposed to come out Wednesday. He's tired, and he still can't walk very far, but he's up and walking, and home.
If you're feeling the urge to stop by and say hello, give a call first. I think he's got some sleep to catch up on. In a real bed. At home.
- Kevin
Mike is home. After sixteen days at Abbott, HOME.
We were very glad to say goodbye to the nurses in the Critical Observation Oncology ward, but not because they weren't awesome - they were great. It's just that the hospital isn't someplace you choose to be unless you work there.
Oxygen is down to 2L/minute, and he has a prescription for the portable concentrator, which should give him much greater mobility than carrying tanks. We may test that out tomorrow.
Blood counts are nearly normal, and he's almost entirely free of tubes - one remaining from the "perc neph" but that's supposed to come out Wednesday. He's tired, and he still can't walk very far, but he's up and walking, and home.
If you're feeling the urge to stop by and say hello, give a call first. I think he's got some sleep to catch up on. In a real bed. At home.
- Kevin
Saturday, May 12, 2012
Transfusion redux
Kevin again.
Mike did not go home today. He got two transfusions instead, one set of platelets to help with clotting and another unit of whole blood. If you can give blood, please do so - you'll be helping someone who really needs it. The problem currently is that he's still bleeding in his kidneys from the surgeries, and the doctors want to see that stop before they remove the "perc neph" - the percutaneous nephrostomy from the second surgery.
He needs to have 24 hours of mostly clear (or at least mostly blood-free) fluids in the perc neph before they remove it. Which means he's at least a day away from going home, or was as of earlier tonight.
In happier news, we've been dialing back his oxygen, trying to get him down to below 3 liters/minute so he could switch to the portable concentrator. That seems to be going well. We've also asked the nursing staff to get him tested for switching to pulse delivery of oxygen, which would be better in a couple of ways: first, because the portable concentrator can deliver pulses at higher volume than it can a steady flow, and second, because he wouldn't have the steady flow of air drying out his nasal passages.
I have the feeling I wrote that before. Oh well, it's important enough it's worth saying twice if I did.
- Kevin
Mike did not go home today. He got two transfusions instead, one set of platelets to help with clotting and another unit of whole blood. If you can give blood, please do so - you'll be helping someone who really needs it. The problem currently is that he's still bleeding in his kidneys from the surgeries, and the doctors want to see that stop before they remove the "perc neph" - the percutaneous nephrostomy from the second surgery.
He needs to have 24 hours of mostly clear (or at least mostly blood-free) fluids in the perc neph before they remove it. Which means he's at least a day away from going home, or was as of earlier tonight.
In happier news, we've been dialing back his oxygen, trying to get him down to below 3 liters/minute so he could switch to the portable concentrator. That seems to be going well. We've also asked the nursing staff to get him tested for switching to pulse delivery of oxygen, which would be better in a couple of ways: first, because the portable concentrator can deliver pulses at higher volume than it can a steady flow, and second, because he wouldn't have the steady flow of air drying out his nasal passages.
I have the feeling I wrote that before. Oh well, it's important enough it's worth saying twice if I did.
- Kevin
Friday, May 11, 2012
One malt, one walk, one chair
(Title adapted from "One Bourbon, One Scotch, One Beer" by George Thorogood)
Kevin here, catching up on the last couple of days...
Thursday
Mom and I got Mike a vanilla malt, size small - the "Junior" according to the register at Andy's Garage in Midtown Global Market - for lunch Thursday.
He hadn't eaten much of anything on Wednesday - his mouth is sore from the chemo and possibly some of the other drugs, and the oxygen blasting into his nose has dried out his nasal passages and throat, despite the bubbling tank of distilled water it's blasting through. He was also nauseated from the various drugs, which didn't help much.
Mom and I took a walk to Midtown Global Market (henceforth MGM) to have lunch while he napped. It's about a half-mile from Abbott, but there is a skyway that connects the two, so we had an easy walk over across the Greenway. We chose Andy's Garage for lunch, because of the malts. Mike had wanted ice cream the night before, which I failed to deliver for Movie Night. In my defense, I did manage to find buttered noodles.
When we got back with the malt, Mike was awake and sitting up. He managed to eat the whole thing over the span of about 20 minutes, which was very good. We had a good talk before I headed off to watch Alex's baseball game, in which I reminded him that he needs to get out of bed before he can go home. Mom called later to let me know that he did get in a walk and spent about an hour in the chair instead of the bed.
Friday
I just got in a short visit on Friday after work, before he started drooping about 8pm. Ray & I walked over to MGM to pick up food again. I got a malt this time. :)
We picked Mike up some refritos and rice - easy foods to eat, not too spicy, but not bland.
He's off the catheter, and was off the IV as well. Oxygen was down to 3.5, heading to the below-3-liters-per-minute level that would allow him to use a portable system instead of a stationary oxygen concentrator. This would be a good thing.
When I got there, he was up and sitting in the chair, and Jen said he'd been walking around when she got there. He got in another walk today, using the walker but not relying on it.
Saturday release is possible. Here's hoping.
- Kevin
Kevin here, catching up on the last couple of days...
Thursday
Mom and I got Mike a vanilla malt, size small - the "Junior" according to the register at Andy's Garage in Midtown Global Market - for lunch Thursday.
He hadn't eaten much of anything on Wednesday - his mouth is sore from the chemo and possibly some of the other drugs, and the oxygen blasting into his nose has dried out his nasal passages and throat, despite the bubbling tank of distilled water it's blasting through. He was also nauseated from the various drugs, which didn't help much.
Mom and I took a walk to Midtown Global Market (henceforth MGM) to have lunch while he napped. It's about a half-mile from Abbott, but there is a skyway that connects the two, so we had an easy walk over across the Greenway. We chose Andy's Garage for lunch, because of the malts. Mike had wanted ice cream the night before, which I failed to deliver for Movie Night. In my defense, I did manage to find buttered noodles.
When we got back with the malt, Mike was awake and sitting up. He managed to eat the whole thing over the span of about 20 minutes, which was very good. We had a good talk before I headed off to watch Alex's baseball game, in which I reminded him that he needs to get out of bed before he can go home. Mom called later to let me know that he did get in a walk and spent about an hour in the chair instead of the bed.
Friday
I just got in a short visit on Friday after work, before he started drooping about 8pm. Ray & I walked over to MGM to pick up food again. I got a malt this time. :)
We picked Mike up some refritos and rice - easy foods to eat, not too spicy, but not bland.
He's off the catheter, and was off the IV as well. Oxygen was down to 3.5, heading to the below-3-liters-per-minute level that would allow him to use a portable system instead of a stationary oxygen concentrator. This would be a good thing.
When I got there, he was up and sitting in the chair, and Jen said he'd been walking around when she got there. He got in another walk today, using the walker but not relying on it.
Saturday release is possible. Here's hoping.
- Kevin
Tuesday, May 08, 2012
Walkies
Kevin again.
Major milestone today was getting in the first walk since the first surgery (for those keeping score at home, we are at two surgeries in this hospital stay of a currently-planned three). The Physical Therapist was an elegant and wiry woman who boasted proudly that she had not had a patient with an exposed backside in more than 20 years. I pointed out that this was quite a streak of not streaking.
Mike's color is much improved, his energy is up, and I'm no longer wondering if he's ever going to get to go home. Which is a good thing. He's down to 4 liters of oxygen per minute, from 6 yesterday (and most of today). The PT prescribed a second walk today, and at least three tomorrow. The idea is to get him on the road to mobility, so when he goes home he's not helpless. I like this line of thinking.
As of today, the plan is for surgery number three on Thursday (I'm guessing early because most of his surgeries have been early - I think hospitals tend to schedule the morning and use the afternoon as buffer to deal with emergencies, but what do I know, I'm no medical professional).
Earliest possible release day is Friday, with Saturday looking more likely to me. Again, not a medical professional.
- Kevin
Major milestone today was getting in the first walk since the first surgery (for those keeping score at home, we are at two surgeries in this hospital stay of a currently-planned three). The Physical Therapist was an elegant and wiry woman who boasted proudly that she had not had a patient with an exposed backside in more than 20 years. I pointed out that this was quite a streak of not streaking.
Mike's color is much improved, his energy is up, and I'm no longer wondering if he's ever going to get to go home. Which is a good thing. He's down to 4 liters of oxygen per minute, from 6 yesterday (and most of today). The PT prescribed a second walk today, and at least three tomorrow. The idea is to get him on the road to mobility, so when he goes home he's not helpless. I like this line of thinking.
As of today, the plan is for surgery number three on Thursday (I'm guessing early because most of his surgeries have been early - I think hospitals tend to schedule the morning and use the afternoon as buffer to deal with emergencies, but what do I know, I'm no medical professional).
Earliest possible release day is Friday, with Saturday looking more likely to me. Again, not a medical professional.
- Kevin
Thursday, May 03, 2012
Out of surgery already
Kevin here again.
Mike had dialysis yesterday - apparently the wide variety of things he's been subjected to have been hard enough on his kidneys that they basically shut down, which is why he's in the hospital. The process for dealing with this is to hook him up to a machine that can filter the crap out of his blood for him, since his kidneys are not living up to their part of the bargain.
Stupid kidneys.
He went into surgery this morning and it finished quickly, which is a probably a Very Good Sign. The purpose of the surgery was to put stents into his kidneys to allow them to function better. He'd been told there were two options - the easy way would be going in through the urethra, but if there was blockage from the cancer in the abdomen, the surgeon might need to get to the kidneys from the back. Which would be a bigger deal.
Jen texted me at 8:20 to tell me Mike was going into surgery, and called at 8:40 to tell me he was out. Sounds like the fast option worked.
Still unknown: recovery time from the surgery, time to get back to normal creatinine levels, time to get back to normal kidney function, effect of all this on various medications, whether this affects the chemotherapy... so much we don't know. But for now, he's out of surgery, which is better than being in it.
- Kevin
Mike had dialysis yesterday - apparently the wide variety of things he's been subjected to have been hard enough on his kidneys that they basically shut down, which is why he's in the hospital. The process for dealing with this is to hook him up to a machine that can filter the crap out of his blood for him, since his kidneys are not living up to their part of the bargain.
Stupid kidneys.
He went into surgery this morning and it finished quickly, which is a probably a Very Good Sign. The purpose of the surgery was to put stents into his kidneys to allow them to function better. He'd been told there were two options - the easy way would be going in through the urethra, but if there was blockage from the cancer in the abdomen, the surgeon might need to get to the kidneys from the back. Which would be a bigger deal.
Jen texted me at 8:20 to tell me Mike was going into surgery, and called at 8:40 to tell me he was out. Sounds like the fast option worked.
Still unknown: recovery time from the surgery, time to get back to normal creatinine levels, time to get back to normal kidney function, effect of all this on various medications, whether this affects the chemotherapy... so much we don't know. But for now, he's out of surgery, which is better than being in it.
- Kevin
Wednesday, May 02, 2012
Once more into the hospital, dear friends.
Kevin here.
Mike is in the hospital again. He went in under his own power yesterday. His oncologist called Tuesday afternoon, after reviewing some of the bloodwork from the infusion session on Monday, with concerns on high levels of creatinine. This indicates some kind of kidney problem -- as Mike says, "one of the few organs not already involved with the cancer" -- and is worth looking into.
So, to the hospital, for some additional scans of the kidney, and as long as he's there, how about some scans of the chest and an EKG. Waiting for the results and monitoring him means he is (was) there overnight at least. Which is good, because he's really short of breath, and bad, because hospitals are not restful places to be.
I got there about 8pm, as he was off for scans, accompanied by Mom. He eventually made it back to the room, and then Jen showed up and we had a little hangout party until about 11pm when Mike's eyes were starting to droop, and then we sent Jen and Mom home. I stuck around for a while. He was tired but not asleep, and we were waiting for the middle-of-the-night scans recommended by the hospitalist, so I figured some company wouldn't hurt.
Hospitalist is an interesting word. Wikipedia tells me that it dates back to 1996, and is used to describe doctors whose professional focus is on a location of care (hospitals) rather than an organ (podiatrists), a disease (oncologists) or the patient's age (pediatricians). Man, healthcare is complicated.
The hospitalist in question was very nice. She'd clearly read through Mike's charts and background information, and followed up on the specifics of why he was in and the chest pain he had reported to the staff while he was being transported to and from radiology. After some thought (and some medical poking and prodding) she offered a preliminary diagnosis of musculoskeletal pain, caused by his heart working overtime to get oxygen to his body with his low hemoglobin counts. The other options, for those keeping score at home, are heart attack (not likely because of the location and symptoms) or pulmonary embolism (not likely because of the symptoms and the sound of his lungs).
The night nurse, Rosalinda, is really nice. I sometimes wonder why people chose nursing as a profession, but it's clear that she chose it because it means she gets to take care of people. She was even doing it to me. I was fine up until that point, but I started crying after they took him off for scans about 12:30 am and she told me I could listen to him (and go home) or stay if I wanted.
More when we know more.
- Kevin
Mike is in the hospital again. He went in under his own power yesterday. His oncologist called Tuesday afternoon, after reviewing some of the bloodwork from the infusion session on Monday, with concerns on high levels of creatinine. This indicates some kind of kidney problem -- as Mike says, "one of the few organs not already involved with the cancer" -- and is worth looking into.
So, to the hospital, for some additional scans of the kidney, and as long as he's there, how about some scans of the chest and an EKG. Waiting for the results and monitoring him means he is (was) there overnight at least. Which is good, because he's really short of breath, and bad, because hospitals are not restful places to be.
I got there about 8pm, as he was off for scans, accompanied by Mom. He eventually made it back to the room, and then Jen showed up and we had a little hangout party until about 11pm when Mike's eyes were starting to droop, and then we sent Jen and Mom home. I stuck around for a while. He was tired but not asleep, and we were waiting for the middle-of-the-night scans recommended by the hospitalist, so I figured some company wouldn't hurt.
Hospitalist is an interesting word. Wikipedia tells me that it dates back to 1996, and is used to describe doctors whose professional focus is on a location of care (hospitals) rather than an organ (podiatrists), a disease (oncologists) or the patient's age (pediatricians). Man, healthcare is complicated.
The hospitalist in question was very nice. She'd clearly read through Mike's charts and background information, and followed up on the specifics of why he was in and the chest pain he had reported to the staff while he was being transported to and from radiology. After some thought (and some medical poking and prodding) she offered a preliminary diagnosis of musculoskeletal pain, caused by his heart working overtime to get oxygen to his body with his low hemoglobin counts. The other options, for those keeping score at home, are heart attack (not likely because of the location and symptoms) or pulmonary embolism (not likely because of the symptoms and the sound of his lungs).
The night nurse, Rosalinda, is really nice. I sometimes wonder why people chose nursing as a profession, but it's clear that she chose it because it means she gets to take care of people. She was even doing it to me. I was fine up until that point, but I started crying after they took him off for scans about 12:30 am and she told me I could listen to him (and go home) or stay if I wanted.
More when we know more.
- Kevin
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