Saturday, yesterday, Josh was discharged from the hospital. His his pain is pretty well controlled, and the fever is bouncing a little but not a lot. I am changing the dressings… and working on the meds schedule. If you’ve ever been in the hospital you know that it’s a challenge to keep the meds straight. We are ensconced in an hotel suite with kitchen, and Joshua had a good night’s sleep for the first night in many days. No news yet about pathology. We are watching daytime TV, eating NY Pizza, life is good.
Celebrate good times!
Sunday, June 28, 2009
Thursday, June 25, 2009
Josh Writes:
I realize that the tone of my account of the past few days differs quite a lot from that of my parents', but this fact just shows once again that we all experience the world differently. It also clearly demonstrates the fact that I am on drugs.
Considering the intensity of the surgery I just went through, I would say that the past few days have gone stunningly well. While it did take too long to find the right combination and dosage of painkillers so that I could be comfortable, ANY time at all would have been too long: pain just sucks for everyone involved, there's no way to gloss over it. In some ways it might be worse for the caregivers than the patient, when the patient doesn't feel any guilt for not being able to make it better, and when he often doesn't remember most of the pain anyway.
Same with the Fever of Unknown Origin. It definitely sucks to be soaking through pillowcase after pillowcase, but while they have to watch me moan, I get to have some pretty amazing hallucinations and other extra-ordinary experiences. For instance, I recently had the pleasure of serving as a medium via whom the spirits of some close family friends communed with their respective recently-deceased relatives. Now folks, all I am saying here is that's what it felt like when I woke up, but nonetheless, it was a pretty interesting experience that I'll bet made my afternoon quite different from everyone else's.
Personally, I think that it's the previously-diagnosed minor pneumonia that is causing the fevers, and that the antibiotics that I am already on will shortly eliminate this worry. In the meantime, my body is bouncing back amazingly well from an incredibly extensive surgery, especially considering that I just lost my spleen, which while not strictly necessary, would under normal circumstances be participating in the current fight with this minor pneumonia, a not-uncommon post-surgical outcome. I am in negligible pain with the help of a relatively small dose of long-acting Oxycontin, with no need so far to take the available fast-acting painkiller. I walked about a mile and a half today, absolutely smoking the competition, if I do say so myself. My cough has disappeared, I am up to 2750ml on the Inspirometer, am enjoying normal food, had a real bowel movement, and spent the day alert and chatting with old friends.
Today was an amazingly good day. Tomorrow will be even better!
Considering the intensity of the surgery I just went through, I would say that the past few days have gone stunningly well. While it did take too long to find the right combination and dosage of painkillers so that I could be comfortable, ANY time at all would have been too long: pain just sucks for everyone involved, there's no way to gloss over it. In some ways it might be worse for the caregivers than the patient, when the patient doesn't feel any guilt for not being able to make it better, and when he often doesn't remember most of the pain anyway.
Same with the Fever of Unknown Origin. It definitely sucks to be soaking through pillowcase after pillowcase, but while they have to watch me moan, I get to have some pretty amazing hallucinations and other extra-ordinary experiences. For instance, I recently had the pleasure of serving as a medium via whom the spirits of some close family friends communed with their respective recently-deceased relatives. Now folks, all I am saying here is that's what it felt like when I woke up, but nonetheless, it was a pretty interesting experience that I'll bet made my afternoon quite different from everyone else's.
Personally, I think that it's the previously-diagnosed minor pneumonia that is causing the fevers, and that the antibiotics that I am already on will shortly eliminate this worry. In the meantime, my body is bouncing back amazingly well from an incredibly extensive surgery, especially considering that I just lost my spleen, which while not strictly necessary, would under normal circumstances be participating in the current fight with this minor pneumonia, a not-uncommon post-surgical outcome. I am in negligible pain with the help of a relatively small dose of long-acting Oxycontin, with no need so far to take the available fast-acting painkiller. I walked about a mile and a half today, absolutely smoking the competition, if I do say so myself. My cough has disappeared, I am up to 2750ml on the Inspirometer, am enjoying normal food, had a real bowel movement, and spent the day alert and chatting with old friends.
Today was an amazingly good day. Tomorrow will be even better!
Thursday 25 June .....Learning to Wait
Still in the woods perhaps, but I don’t want to leave you the impression it’s a trackless wilderness or something. Actually there are quite good objective measures that show continuous improvement in the patient’s condition. Bowel and bladder function returning, physical discomfort is lessening, stamina increasing, walking, reaching, coughing, getting in and out of bed, eating, are all getting easier. But sitting with him from moment to moment can be disturbing, boring, anxious, or fine, depending on the wild swings in apparent condition: sometimes he’s just completely out of it, and within an hour we cn be comfortably walking 14 laps around the floor. White counts and fever are down again this morning, another tube was disconnected (the pain button, no longer needed), but he is completely listless, seemingly overmedicated. He’s decreasing the pain meds again, and we hope to see more liveliness.
I’m learning some additional categories of patience, especially with respect to rhythms of the hospital, of recovery from major surgery, and the extent to which things can be accomplished efficiently in this situation. Improvements can be seen, but nothing happens in a straight line; nurses and doctors respond, each according to their job requirement, but not necessarily as the patient or caregiver wants it to happen. Urgencies are dealt with quickly, but what is truly urgent depends on what you are trained to know.
We’re still waiting for a bunch of reports to try to explain why Josh had fevers and other signs of infection when none could be easily found. Another kind of waiting- for an infection to “declare itself”- so they know what to treat, if anything. Could just be from the spelenectomy, or from the suspected pneumonia, or ..?
And we are also waiting for the big pathology report. The tumor is being sliced and diced and searched for what-all’s in there. Preliminary indications were good- only teratoma and necrotic tissue was found in the first samples. I imagine a guy sitting in a freezer faced with a mountain of thin-sliced mozzarella cheese. And he has to look at every slice under the scope, trying to find the joker.
I’m learning some additional categories of patience, especially with respect to rhythms of the hospital, of recovery from major surgery, and the extent to which things can be accomplished efficiently in this situation. Improvements can be seen, but nothing happens in a straight line; nurses and doctors respond, each according to their job requirement, but not necessarily as the patient or caregiver wants it to happen. Urgencies are dealt with quickly, but what is truly urgent depends on what you are trained to know.
We’re still waiting for a bunch of reports to try to explain why Josh had fevers and other signs of infection when none could be easily found. Another kind of waiting- for an infection to “declare itself”- so they know what to treat, if anything. Could just be from the spelenectomy, or from the suspected pneumonia, or ..?
And we are also waiting for the big pathology report. The tumor is being sliced and diced and searched for what-all’s in there. Preliminary indications were good- only teratoma and necrotic tissue was found in the first samples. I imagine a guy sitting in a freezer faced with a mountain of thin-sliced mozzarella cheese. And he has to look at every slice under the scope, trying to find the joker.
Wednesday, June 24, 2009
Coming along...fevers and chocolate
Tuesday June 23
Well yesterday was eventful after the orgasmic removal of the epidural. We walked, and Josh took a wondrous, glorious, spectacular, spashy shower. Waterwonder.
The pain team gave Joshua control of the oxymorphone dosing, to see how it went over the course of the day. The idea was to establish how much opiate-like substance he would need, in order to change to oral meds.
I was rather leery of this approach since it seemed to me that while the toradol was spectacularly effective,
1. The oxymorphone was not working well at all, (and that maybe it was responsible for the fevers…which may or may not be the case, of course. Except that Daniel ALWAYS has a bad reaction to opiates…and, I can’t tell whether this family information crosses over the pain management team’s threshold for “worth consideration” but they don’t seem to acknowledge this as a possibility. Maybe it’s not worth much. Or maybe it is?)
and
2. I was pretty sure that by the time the situation was clear enough, that the pain management’s A-team would be long gone, and only the lonely, nighttime responders would be left in the hospital. There was nothing to do but go along for the ride...And....
Josh texted me at 1:30 AM to say he was in a lot of pain and had a high fever. I decided to give a call to the head nurse about ‘can we have closer attention from the pain team? And a plan in place by EARLY morning instead of waiting for them to arrive later in the day?’
Josh called in the AM to report he was going for a CT to find out why the fever, and that if they found gunk in his abdomen he might be in interventional radiology when I got there. I took the morning off with Daniel, walked Manhattan, breathed perfectly humidified comforting air.
Josh was back from the CT when we arrived: the initial read, of course is “fine” (which is, I think, the trained response of anyone working in radiology whether it’s “fine,” or not) but we were informed at 6 PM that he has pneumonia, and “just a little effusion…”
So no interventional needles were needed at the moment, the abdomen so far looks good (Yay) and he’s on IV and the pain team HAS changed him to morphine, early in the AM, which DEFINITELY is better from the looks of him.
So that 1:30 AM call was either effective, or redundant, but I am grateful that the pain team made the change EARLY and that Josh is more comfortable and that they have made tweaks thoughout the day. He was definitely more peppy—or is it antic? or fidgety?-- all day—(the antibiotics? the morphine? the recovery? is he sick?)—and his MDs are happy with his progress. He was lapping the floors, asking for this and that, and able to look around him, hold a conversation, and plead for food, back scratches, foot rubs, hand holding, head massages, more food, different food, other food. And, he’s not into kibbles: only wet food. The mouth is really dry.
“Bring pastries! Lemon or almond”
“More water!”
“Odwalla protein smoothie but not that kind you brought yesterday it was too thick, but OK, if you can’t find anything else we’ll water it down!”
“Chicken but not dry chicken. Juicy chicken.”
Meanwhile, he hardly eats much at all. Two Cherries, a couple of grapes. Banana. Lots of water.
Wednesday
AM: Joshua took ten laps around the floor. Almost a mile. Midday, Joshua looks pasty and lethargic. He is cold and pouring sweat. Not in pain. But feeling lousy. WBC is 29-30. The antibiotics are not doing the trick. More tests: the port, the urine, the blood, the nose. Nothing is certain about what is happening right now… The pain meds are now oral, working fine, and they are going to decrease the dose. He still has the IV for rescue but he’s not pushing the button for pain meds, so that’s a good sign that the orals are working…
It’s evening now, Daniel and I bring Josh a warm chocolate cake with caramel sauce and a crepe filled with hazelnut sauce and fig ice cream. This is the first enthusiastic “meal” he has eaten and every last lick was enjoyed with rolling eyeballs and grunts and moans. This could be called “confectionary color change” as he turns from pale to rosy, really wakes up, and (wonder of wonders….has a productive trip to the bathroom!) He is now out walking, looking pretty spunky and I hear him chatting away with Daniel.
Anyway, if you are contemplating visiting please evaluate the possibility you might infect him or carry infection from him to your loved ones… I repeat: he has pneumonia and an uncontrolled fever with rising white blood cells. So have you been touching children who are notorious carriers? Have a cough you think is “allergies?” Been tumbling in the park picking up cruft? Cleaning your shoes? We would be appreciative if you would become NEUROTIC about hygiene before you plan a visit, and wait a bit. It will be better for everyone involved if you will be patient. Thank you.
And you people praying out there? Whatever you’ve been doing has been much appreciated, and please keep up the good work: we are not out of the woods yet. (Isn’t that a strange turn of phrase? As if the trees and the wolves are more dangerous than hospitals...anyway, we are grateful for the trees the wolves AND all who work in hospitals, equally, as they hold us on this earth)
Monday, June 22, 2009
June 22, 2009 Where'd he go?
The empty bed: Joshua is down in XRay, with a fever and feeling crappy. Apparently he was sleepless and coughing through the night. He comes back, looking peaked. A great saga has occurred overnight: armadillos attacking the earth!!!!
You had to be there....
The pain team arrives, and the duodern/tape removal is so pleasurable that the pain doc comments it sounds pretty orgasmic. We walk to the bathroom, get a urine sample, and I wash his back. Simple pleasures: soap and water.
Fewer tubes! this is progress. The doctors come in and out, they don't have today's bloodwork, but are reporting he is doing better than expected, his WBC (yesterday's) is not elevated nor too low, and Josh is now chipper, now tired. The Integrative Medicine service is here now, giving him a foot massage. Very nice. He is dozing...nice and relaxed.
You had to be there....
The pain team arrives, and the duodern/tape removal is so pleasurable that the pain doc comments it sounds pretty orgasmic. We walk to the bathroom, get a urine sample, and I wash his back. Simple pleasures: soap and water.
Fewer tubes! this is progress. The doctors come in and out, they don't have today's bloodwork, but are reporting he is doing better than expected, his WBC (yesterday's) is not elevated nor too low, and Josh is now chipper, now tired. The Integrative Medicine service is here now, giving him a foot massage. Very nice. He is dozing...nice and relaxed.
June 21, 2009 In and Out of it
On Saturday, Joshua’s hemoglobin was 6. Meaning, not enough blood and oxygen. From moment to moment, Joshua’s face and temperature were changing. Pale blue to subtle yellow, rosy/healthy to ringed circles under the eyes. His eyebrows are gone now, and his eyelids are puffy, his eyes are at half mast much of the time. In some ways I feel distant from this child of mine, I barely affiliate or really recognize him in this state, and yet I’ve seen it so often you’d think I’d find it familiar, which in fact I do. It’s an odd experience, one I’ve had many times professionally. Maybe it’s just a natural human preference for healthiness. I don’t really know. Or maybe it’s just the lack of anything substantive to do or say when breathing is the only useful accompaniment. Joshua is babbling funny nothings, and seeing friends who aren’t here. I am washing his feet. His O2 sat is 80. He is seeing double and amused by the range of ridiculous thoughts and hallucinations. I join his self-amusement with alarm …This kid needs some blood, folks. The blood finally arrived mid-day. Two units did not seem like enough, though.
Sunday: We are on day 4 post op, and Josh is doing much better, can hold a conversation that lasts through two exchanges, and is focusing on stories told by visitors, to some extent. His appearance has stabilized more in the healthy range. (Now his hemoglobin is 8.4, which is still very low. I don’t know why they are skimpy with the blood and the various other components that are also low, like calcium. I guess I am used to the chemotherapy regimens, and MDs who try to normalize what can be normalized asap... so I don’t understand the rationale for not supplying what he needs, especially since he’s been through so much chemo…and just had such a huge surgery…) Anyway, The blood transfusion made a dramatic improvement almost immediately in his pain, his O2 sat, his color, his energy, and his mentation. He is allowed to drink water today, and some dilute juices. The water was most delicious.
The pain meds are controlling pain pretty well: the toredal is the most effective and completely eliminates his pain. But it cannot be administered for more than 5 days, and the effect wears off after 4 hours and he only can have it every eight hours. So the rest of the day is suplemented with self administered oxymorphone IV and a continuous anaesthetic into the spine. This makes him loopy and itchy and more out-of-it and not comfortable. He doesn’t like opiates.
He’s been okayed to eat food now. It’s going slow, but his guts are working. He texted me requesting spaghetti and canolis, but at this point I can’t tell whether this is a joke, a sincere desire, or merely poor judgment about what’s the best thing for his digestive system…so I didn’t rush to get the spaghetti and canolis, which was a big disappointment, and Josh accused me of breaking his trust…Daniel says I should remind Joshua that the dog got kibbles twice a day…and that we still have plenty of kibbles at home.
The grandparents June and Jack and Saul came to visit over this weekend: I’m sure Joshua’s color changes and mentation drifts were upsetting, yet Joshua was clearly better on Sunday than on Friday or Saturday, and he was happy to have them in the room, telling stories.
Daniel has come down with some flu, and has STAYED AWAY and not participated so that nobody catches what he’s got. I’m so sorry he spent Father’s Day alone. He deserves some consolation prizes at some point.
This morning (Sunday) before I arrived the docs said Joshua may get out of the hospital on Tuesday or Wednesday. Personally, I’d like to see some normal blood values before he gets discharged. I hope that’s not asking for too much. Any opinions on this, MD friends?
Sunday: We are on day 4 post op, and Josh is doing much better, can hold a conversation that lasts through two exchanges, and is focusing on stories told by visitors, to some extent. His appearance has stabilized more in the healthy range. (Now his hemoglobin is 8.4, which is still very low. I don’t know why they are skimpy with the blood and the various other components that are also low, like calcium. I guess I am used to the chemotherapy regimens, and MDs who try to normalize what can be normalized asap... so I don’t understand the rationale for not supplying what he needs, especially since he’s been through so much chemo…and just had such a huge surgery…) Anyway, The blood transfusion made a dramatic improvement almost immediately in his pain, his O2 sat, his color, his energy, and his mentation. He is allowed to drink water today, and some dilute juices. The water was most delicious.
The pain meds are controlling pain pretty well: the toredal is the most effective and completely eliminates his pain. But it cannot be administered for more than 5 days, and the effect wears off after 4 hours and he only can have it every eight hours. So the rest of the day is suplemented with self administered oxymorphone IV and a continuous anaesthetic into the spine. This makes him loopy and itchy and more out-of-it and not comfortable. He doesn’t like opiates.
He’s been okayed to eat food now. It’s going slow, but his guts are working. He texted me requesting spaghetti and canolis, but at this point I can’t tell whether this is a joke, a sincere desire, or merely poor judgment about what’s the best thing for his digestive system…so I didn’t rush to get the spaghetti and canolis, which was a big disappointment, and Josh accused me of breaking his trust…Daniel says I should remind Joshua that the dog got kibbles twice a day…and that we still have plenty of kibbles at home.
The grandparents June and Jack and Saul came to visit over this weekend: I’m sure Joshua’s color changes and mentation drifts were upsetting, yet Joshua was clearly better on Sunday than on Friday or Saturday, and he was happy to have them in the room, telling stories.
Daniel has come down with some flu, and has STAYED AWAY and not participated so that nobody catches what he’s got. I’m so sorry he spent Father’s Day alone. He deserves some consolation prizes at some point.
This morning (Sunday) before I arrived the docs said Joshua may get out of the hospital on Tuesday or Wednesday. Personally, I’d like to see some normal blood values before he gets discharged. I hope that’s not asking for too much. Any opinions on this, MD friends?
Friday, June 19, 2009
June 19, 2009 Don't look if you are squeamish!
looking down into pelvis
omentum
is that the diapghragm at top?
on the liver
more on liver
So here it is revealed: the dressings were removed this morning...Last night, we changed to a larger room, Daniel reports:
"if you don't ask you don't get... This being New York, it stands to reason the big cancer hospital would have some super-nice room somewhere. Well on one of our circuits with Josh walking around the floor, Cheryl noticed a corner room with wood flooring- not linoleum- being swabbed out. Cheryl swung into action-"because we are expecting a crowd of visitors and our room is too small" (good line). And voila! Joshua gets the corner suite, easily 2 times the size of the former squeezo space. And with clean, see-through windows! Very nice for tomorrow's visitors."
Cheryl writes: The nurses here have been great. But, hospitals are different at night, and if you stay in one as a caregiver, you find the cracks in the system. Fewer, and often, less-experienced staff. Slimmer resources. They expect you to be sleeping. However, if you are in need of help, often night-time is the worst time to expect it. So this it was a rough night: not good enough pain control and long response times. Neither of us got much sleep, and Josh had lot of pain. Finally around 4 AM they got enough control to be helpful.
Here are some problem areas for all hospitals: the call system has no volume control, so Josh's very soft voice can't be heard in the nurses station. This means I talk for him...And, Even though they say they'll come if they get no response, the room is far from the nursing station, and this is not the way to communicate with people who have problems communicating.
Another systems problem is monitoring pain control. The pain team makes a recommendation, and instead of just DOING what they recommend, they order it and leave. They leave it up to the nurse to set it up--which usually takes between 1/2 hour to an hour 1/4 to set up because she's got other responsibilities, and by that time the pain has gotten worse, which means that it's harder to control and establish best dosages. Then, if it's not working they have to be called up again and we wait for them to arrive and assess. Another delay...So: Why doesn't the pain team assess, administer, AND monitor? ....They also have a strange formula for deciding how much narcotic you need: the more you hit the button, the more narcotic they think you need, and they reset the rate based on "average atttempted hits". But Josh knows that his button is set to administer not more than every 10 minutes, so he doesn't waste his energy pushing the button...too smart for his own good, but what research led the team to decide unconscious behavior is the best indicator to calculate need? Meanwhile, Josh is looking ragged: blanched and moaning, begging for ativan so he can relax, can't find the button to push, can't move without a lot of pain, and the pain person is "being conservative..." Meanwhile Joshua's muscles are cramping and he is having pain breathing... His O2 sat drops, they decide not to give him more opiates since that inhibits respiration, and instead he gets no more pain meds and just O2 until 4AM. The night passes in misery with shallow breathing...Is this backwards or what?
This morning is better, the A-team is on, the ativan came in a competent dose, a decent nap was had, and post-surgical fever is subsiding with exercise. The pain meds, revised, are working...the blood work is low but good, today's Xray shows some expected and resolving lower lung congestion on the R side, and toradol is on the way. Hooray! A lap around the floor, (shuffle, really) a sleepy stint in the chair, some deep breaths and a few painful coughs producing excellent globs, and Josh is back to bed...Able to drink some water today, hooray! and: The toradol is hooked up! Almost instant relief... And, the foley catheter is removed, one less tube to deal with! He is napping nicely now, looking like himself and taking deeper breaths...
Looking happier.
Thursday, June 18, 2009
June 18, 2009
12:50 PM
Daniel writes:
The long slow road to recovery has begun. The rhythms of the hospital have a certain perverse logic: Make the patient as uncomfortable as possible with the breathing tube so when it comes out the relief is so great that the myriad other insults seem more acceptable. Get him so mad that he breathes on his own. Let the frustration build to distract him from his pain. He's doin' great! (He's ready to bite your head off! But he can't because there's a tube jammed in his throat)
Cheryl writes:
I woke up every two hours to call the Post Anesthesia Care Unit and speak to the chirpy nurse who must have been getting shit all night from Joshua because she was less than informative...each time I called she told me, without being questioned, that they could not take the tube out just yet, maybe in another hour...finally I told her that I was not calling to ask her to remove the breathing tube, I just wanted to know how he was. He was "fine." Blood work fine, pressures fine, urine flowing fine.
In the morning they had (finally) removed the breathing tube and we got the story from Josh, who was too sedated to give us the full brunt of his anger but here is what he reported to me:
the breathing tube was hanging to the right and causing him to gag, which made his stomach muscles clench and that was really painful, so he needed more pain meds, which of course suppressed his breathing. He tried to tell them and they tried to hang the tube up, it but that didn't work, either. So then someone decided he needed an Xray, which they said would come in 20 minutes, but that took over two hours to get in the morning. He finally got them to give him a writing board which said: "Why do I need an Xray? It's stupid, Just get this tube out!"
I can't judge what was stupid and what was smart, but what's past is past, the tube is OUT, and now he was transferred the "liver" floor in Room 1629 (private room! with a view of the 59th St. bridge which you could see if they'd clean the birdshit off the window) and sleeping nicely, and feeling nauseous with an epidural and a PC pump for pain control, and itchy from the pain control. They say the nausea is from the anaesthesia yesterday. And they are going to split the local and the general pain controllers in order to figure out what's itching, and change the meds to oxymorphone.
Josh says "Can I have some underwear?" (Catheters and underpants? Nah.) Maybe later.
And, for those of you interested in hospital flow, the transfer process was exceptional: two men came in and did two jobs at once: cleaned the room and got Joshua ready to transfer: they wiped all touched surfaces, wiped, detached and/ or replaced all cords, wrapped them neatly to where they were going to go, or stay, put the drips and pumps on a pole on the bed, wrapped the medical record in a rubber band, put it at his feet, and brought Josh in the same bed up to the room where he is now. So no physical transfers from bed to bed. And no double staff to do transport, then cleanup. Very efficient and antiseptic and thorough. Pretty quick, too!
If any of you want to visit, please text message me to arrange it: 650 380-6080
Cheryl
Daniel writes:
The long slow road to recovery has begun. The rhythms of the hospital have a certain perverse logic: Make the patient as uncomfortable as possible with the breathing tube so when it comes out the relief is so great that the myriad other insults seem more acceptable. Get him so mad that he breathes on his own. Let the frustration build to distract him from his pain. He's doin' great! (He's ready to bite your head off! But he can't because there's a tube jammed in his throat)
Cheryl writes:
I woke up every two hours to call the Post Anesthesia Care Unit and speak to the chirpy nurse who must have been getting shit all night from Joshua because she was less than informative...each time I called she told me, without being questioned, that they could not take the tube out just yet, maybe in another hour...finally I told her that I was not calling to ask her to remove the breathing tube, I just wanted to know how he was. He was "fine." Blood work fine, pressures fine, urine flowing fine.
In the morning they had (finally) removed the breathing tube and we got the story from Josh, who was too sedated to give us the full brunt of his anger but here is what he reported to me:
the breathing tube was hanging to the right and causing him to gag, which made his stomach muscles clench and that was really painful, so he needed more pain meds, which of course suppressed his breathing. He tried to tell them and they tried to hang the tube up, it but that didn't work, either. So then someone decided he needed an Xray, which they said would come in 20 minutes, but that took over two hours to get in the morning. He finally got them to give him a writing board which said: "Why do I need an Xray? It's stupid, Just get this tube out!"
I can't judge what was stupid and what was smart, but what's past is past, the tube is OUT, and now he was transferred the "liver" floor in Room 1629 (private room! with a view of the 59th St. bridge which you could see if they'd clean the birdshit off the window) and sleeping nicely, and feeling nauseous with an epidural and a PC pump for pain control, and itchy from the pain control. They say the nausea is from the anaesthesia yesterday. And they are going to split the local and the general pain controllers in order to figure out what's itching, and change the meds to oxymorphone.
Josh says "Can I have some underwear?" (Catheters and underpants? Nah.) Maybe later.
And, for those of you interested in hospital flow, the transfer process was exceptional: two men came in and did two jobs at once: cleaned the room and got Joshua ready to transfer: they wiped all touched surfaces, wiped, detached and/ or replaced all cords, wrapped them neatly to where they were going to go, or stay, put the drips and pumps on a pole on the bed, wrapped the medical record in a rubber band, put it at his feet, and brought Josh in the same bed up to the room where he is now. So no physical transfers from bed to bed. And no double staff to do transport, then cleanup. Very efficient and antiseptic and thorough. Pretty quick, too!
If any of you want to visit, please text message me to arrange it: 650 380-6080
Cheryl
Wednesday, June 17, 2009
June 17, 2009, The Big Day, Post 6
8:40 PM
We were told that at 6:45 Josh went from the OR to the recovery room. We were just allowed to see him, and he looks JUST FINE. Color good, etc. We tried not to bother him but he woke up anyway and wanted to pull the breathing tube out, of course. His hands and feet were cold so we got the nurse to get him warmed blankets. And, In Celebration, we quietly let him know that the doctors GOT EVERYTHING OUT and that he is going to be just fine. He gave me the triple THUMBS UP, and Then he started to make hand signals, like "call me" or "you call me" or "I'll call you" or "me call me" or "when will you call me" or "will you call the nurse?" or "just call, you idiot." Finally, I understood:
"Do I have your cell phone? Yes Yes Yes, I have your cell phone in my purse!" Phew.
And, just so you know, we were feeling the vibrational sweep of love energy ALL DAY LONG, holding us up, buoying us in your powerful web of care, long distance hugs, and passionate conviction that all will be well. We are so grateful.
And now we are glowing, and having a drink.
We were told that at 6:45 Josh went from the OR to the recovery room. We were just allowed to see him, and he looks JUST FINE. Color good, etc. We tried not to bother him but he woke up anyway and wanted to pull the breathing tube out, of course. His hands and feet were cold so we got the nurse to get him warmed blankets. And, In Celebration, we quietly let him know that the doctors GOT EVERYTHING OUT and that he is going to be just fine. He gave me the triple THUMBS UP, and Then he started to make hand signals, like "call me" or "you call me" or "I'll call you" or "me call me" or "when will you call me" or "will you call the nurse?" or "just call, you idiot." Finally, I understood:
"Do I have your cell phone? Yes Yes Yes, I have your cell phone in my purse!" Phew.
And, just so you know, we were feeling the vibrational sweep of love energy ALL DAY LONG, holding us up, buoying us in your powerful web of care, long distance hugs, and passionate conviction that all will be well. We are so grateful.
And now we are glowing, and having a drink.
June 17, 2009, The Big Day, Post 5
5:21 PM
We just met with Dr Jarnagin, the liver surgeon. Everything went well. All the masses were removed, no blood transfusion is needed as yet, although it may be needed in a day or two. "What did it look like?" "Mozzarella cheese. White. Squishy but firm enough that when we grabbed it, it didn't break." "Was the 'cystic space' behind the liver fluid-filled?" "No, it was solid. The masses were mostly in small bits with no apparent blood supply but it might have gotten it from the liver. It's in the hands of the pathologists now."
So: The gallbladder stayed, the spleen went, a small part of the liver and some of the diaphragm were removed, and repaired. The liver was blue instead of chestnut, which is common for people who've had chemotherapy. Sometimes that resolves, but his liver function is good, which is what counts.
Right now, Dr Scheinfeld, the urologist, is feeling around the retroperitoneal area to see if there are any masses that are residual from the RPLND, and he has not found anything yet. Dr Scheinfeld will also close Joshua up. We are staying in the waiting room near the Post Anaesthesia Care Unit, where Josh will be carefully monitored all night. He'll be here at least one night, maybe two. We'll get to see him in a couple of hours.
So far, this has gone as well as possible. We are happy, relieved, and not out of the woods yet but getting there.
I have the honor to publish, for the very first time, an ode to spleen, by Sarah Meyer:
Departure
To Josh's spleen, betwixt, between
The liver and the colon,
We here forewarn that Thursday morn'
You'll find that you've been stolen.
But please, dear spleen, remain serene,
O King of things lymphatic,
Our praise for you and all you do
Has always been emphatic.
You've done your part, like lungs and heart
To keep our dear Josh healthy.
But soon, anon, you'll be withdrawn
By surgeons, skilled and stealthy.
We've always seen, departing spleen,
Your obvious potential, but--
The time's at hand to understand
You're simply nonessential.
Yet be at peace as we release
You from your carnal dwelling.
And contemplate how grand, how great's
The tale you'll soon be telling--
Of how you firmly dealt with germs
And fought off each infection,
Of how you met with old kismet,
And faced the last resection.
And so, goodbye, as the surgeons tie
A knot in the final suture,
As we turn our eyes to the gold sunrise
Of a bright, yet spleenless, future.
We just met with Dr Jarnagin, the liver surgeon. Everything went well. All the masses were removed, no blood transfusion is needed as yet, although it may be needed in a day or two. "What did it look like?" "Mozzarella cheese. White. Squishy but firm enough that when we grabbed it, it didn't break." "Was the 'cystic space' behind the liver fluid-filled?" "No, it was solid. The masses were mostly in small bits with no apparent blood supply but it might have gotten it from the liver. It's in the hands of the pathologists now."
So: The gallbladder stayed, the spleen went, a small part of the liver and some of the diaphragm were removed, and repaired. The liver was blue instead of chestnut, which is common for people who've had chemotherapy. Sometimes that resolves, but his liver function is good, which is what counts.
Right now, Dr Scheinfeld, the urologist, is feeling around the retroperitoneal area to see if there are any masses that are residual from the RPLND, and he has not found anything yet. Dr Scheinfeld will also close Joshua up. We are staying in the waiting room near the Post Anaesthesia Care Unit, where Josh will be carefully monitored all night. He'll be here at least one night, maybe two. We'll get to see him in a couple of hours.
So far, this has gone as well as possible. We are happy, relieved, and not out of the woods yet but getting there.
I have the honor to publish, for the very first time, an ode to spleen, by Sarah Meyer:
Departure
To Josh's spleen, betwixt, between
The liver and the colon,
We here forewarn that Thursday morn'
You'll find that you've been stolen.
But please, dear spleen, remain serene,
O King of things lymphatic,
Our praise for you and all you do
Has always been emphatic.
You've done your part, like lungs and heart
To keep our dear Josh healthy.
But soon, anon, you'll be withdrawn
By surgeons, skilled and stealthy.
We've always seen, departing spleen,
Your obvious potential, but--
The time's at hand to understand
You're simply nonessential.
Yet be at peace as we release
You from your carnal dwelling.
And contemplate how grand, how great's
The tale you'll soon be telling--
Of how you firmly dealt with germs
And fought off each infection,
Of how you met with old kismet,
And faced the last resection.
And so, goodbye, as the surgeons tie
A knot in the final suture,
As we turn our eyes to the gold sunrise
Of a bright, yet spleenless, future.
June 17, 2009, The Big Day, Post 4
It's 2:53 PM and we just met with Dr Barakat, who reported that he was able to remove everything he was responsible for, without difficulty. He feels the effort was very successful, and that he left no residual masses. He went first because they weren't sure what the abdominal area would entail, and they were pretty sure about the liver area, that it could be successfully dealt with.
I asked what the masses looked like, or felt like. He said they were mostly soft fleshy masses that most resembled sarcoma, and there was one hard mass around the ileum and the cecum which could not be detached, so an ileocecal resection and reattachment was done. They sent that part for frozen section analysis. He did not have to create an ostomy (an intestinal tube through the abdominal wall). He removed the omentum, (the fat flap which makes a beer belly) which was laced with the stuff. The mass in the lower pelvis just "came out." He peeled it off the colon, he peeled it off the bladder. The mass was adherent to the peritoneum, so the mass and the peritoneal layer it was adherent to was removed. He said the pelvis is now "empty." He placed a port for potential chemotherapy into the abdominal cavity, which can be removed at any time.
He said "I'm a gynecologist, but Dr Bosl called this one right: I do this type of surgery all the time and although I've never worked on this type of cancer this type of surgery was not unusual for me." And he looked very relieved, as are we.
Now Dr Jarnagin is working. Dr Barakat predicts his job will also be not too difficult.
I asked what the masses looked like, or felt like. He said they were mostly soft fleshy masses that most resembled sarcoma, and there was one hard mass around the ileum and the cecum which could not be detached, so an ileocecal resection and reattachment was done. They sent that part for frozen section analysis. He did not have to create an ostomy (an intestinal tube through the abdominal wall). He removed the omentum, (the fat flap which makes a beer belly) which was laced with the stuff. The mass in the lower pelvis just "came out." He peeled it off the colon, he peeled it off the bladder. The mass was adherent to the peritoneum, so the mass and the peritoneal layer it was adherent to was removed. He said the pelvis is now "empty." He placed a port for potential chemotherapy into the abdominal cavity, which can be removed at any time.
He said "I'm a gynecologist, but Dr Bosl called this one right: I do this type of surgery all the time and although I've never worked on this type of cancer this type of surgery was not unusual for me." And he looked very relieved, as are we.
Now Dr Jarnagin is working. Dr Barakat predicts his job will also be not too difficult.
June 17, 2009, The Big Day, Post 3
Post 1 apparently evaporated.
1:30 PM. The Update nurse reports that the abdominal masses are coming out well and that Dr Barakat thinks they will all be coming out. The order of operation was reversed for some reason, and the liver surgeon, who was scheduled to work first, will come in after the abdominal masses are out...
1:30 PM. The Update nurse reports that the abdominal masses are coming out well and that Dr Barakat thinks they will all be coming out. The order of operation was reversed for some reason, and the liver surgeon, who was scheduled to work first, will come in after the abdominal masses are out...
June 17, 2009, The Big Day, Post 1
Celebrating summer, the birds chirped all night. Here in NY it must be their only opportunity to be heard above the traffic.
In the morning, The Sun Rose, we got up, and gratefully accepted an avalanche of wonderful wishes from friends and family far and wide. We arrived at 7 as instructed, and waited around as usual... In the pre-0p room we quietly sang Beatles songs (Revolution) (I Will), and our family's song, a Mozart round. (Bona Nox, but we don't know the words...we just do dum dum dum)
Then Joshua and Daniel took power naps.
Just now, 10:11 AM, Josh is getting the epidural installed by a doc who does 12 a day, every day for four years....I check to make sure nobody is a novice.
The organization at MSKCC is very reassuring: plenty of systems to keep family members informed and connected to what is happening, so far.
In the morning, The Sun Rose, we got up, and gratefully accepted an avalanche of wonderful wishes from friends and family far and wide. We arrived at 7 as instructed, and waited around as usual... In the pre-0p room we quietly sang Beatles songs (Revolution) (I Will), and our family's song, a Mozart round. (Bona Nox, but we don't know the words...we just do dum dum dum)
Then Joshua and Daniel took power naps.
Just now, 10:11 AM, Josh is getting the epidural installed by a doc who does 12 a day, every day for four years....I check to make sure nobody is a novice.
The organization at MSKCC is very reassuring: plenty of systems to keep family members informed and connected to what is happening, so far.
June 17, 2009, The Big Day, Post 2
The OR surgical reporting system here is so far working.
Josh went into surgery at 11:05, they started at 11:39, and we registered with the waiting room: they took my cell phone number, made sure I had a beeper with a two mile radius and a return phone number to call, so if we went out they could contact us, and we grabbed a bite to eat and sat down in the waiting room.
The information nurse and her nurse educator buddy came through at 12:15 and spoke to every person waiting for a loved one: their job is to give updates from the OR. Nice people, feeling us out for needs, being proactive, and taking feedback. Listening. They are expecting that the surgery will take 7 hours or so. We are hoping that they use the full seven hours because we think that will mean they were able to remove what they went in for. If the surgery is much shorter, it means they couldn't get it all, or decided not to...So for us, we are hoping to hear that they have not closed too soon. Or we are hoping to hear that our fantasy has come true: that when the incision was made, the tumors LEAPED out of the abdomen ONTO the pathology tray and sliced themselves up, harikari style...
Josh went into surgery at 11:05, they started at 11:39, and we registered with the waiting room: they took my cell phone number, made sure I had a beeper with a two mile radius and a return phone number to call, so if we went out they could contact us, and we grabbed a bite to eat and sat down in the waiting room.
The information nurse and her nurse educator buddy came through at 12:15 and spoke to every person waiting for a loved one: their job is to give updates from the OR. Nice people, feeling us out for needs, being proactive, and taking feedback. Listening. They are expecting that the surgery will take 7 hours or so. We are hoping that they use the full seven hours because we think that will mean they were able to remove what they went in for. If the surgery is much shorter, it means they couldn't get it all, or decided not to...So for us, we are hoping to hear that they have not closed too soon. Or we are hoping to hear that our fantasy has come true: that when the incision was made, the tumors LEAPED out of the abdomen ONTO the pathology tray and sliced themselves up, harikari style...
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