Passing into the infinite, Howard Niederman, my dad

Sad news- Cheryl’s dad Howard Niederman died Sunday morning…he was 93 and enjoyed every moment that was available to enjoy. He knew we loved him and were sorry that he had lived such a constricted life in the end. He had a great smile and a sense of humor in the darkest of circumstances, and his wonderful caregivers went beyond compassion to give him comfort. We were already in reflection mode due to the advent of Rosh Hashana starting Friday night, and all of the family members enjoyed some time with him on Friday and Saturday afternoon singing Hebrew songs and telling him stories. Daniel got his oldest son Rick on the phone to talk to him: by Saturday Dad could not speak, but he kissed us, and all the beings he loved, goodbye. He died at sunrise. We spent the day in his presence, telling stories and singing him songs, till the picker-uppers came for his body.

Family is gathering, and we’re having a remembrance and celebration tomorrow, Wednesday at 11:00 AM. Please come to our home if you would like to participate.

Thursday is Daniel's birthday, his cousin Zak gets married Saturday and next Monday is Yom Kippur. Talk about 10 days of awe and reflection. We are squeezed between the infinite and the infinitessimal. Well, here’s from us to you and yours: L'shana tova. Onward with optimism. L’Chayim!

We’ve had a few nice days of recovery, lovely weather drawing us out on very long jaw-dropping walks through the wonders of New York City: the Rivers, the Fireworks, the Parks, the Buildings, the Taxis, the Rooftops, the Theaters, the Shopping, and certainly the People!

While Josh needed to walk slowly and take rest breaks, and eat tiny meals, we had a lovely look around, entertained by many friends.

Joshua’s abdominal port—which blessedly was not needed-- was surgically removed on Wednesday, and we planned to fly home Friday, and to celebrate nearly the end of this period. Yet, we’re not really “done.”

There are some abdominal (incisional) wounds that have to be packed and dressed twice a day-- so we are not quite free of the drawers of medical supplies and pills...
But Happily the fentanyl patches are really effective for pain control.

And so it seemed that we were at least on the home stretch, and despite today’s report—below—we still think we are on the home stretch…
and…
announcing….
new EYEBROWS!! Yeah!
new BEARD HAIRS!! Yeah!

Alas.
Instead of going to the airport,
Joshua developed an overnight fever, diarrhea, vomited once, and we are back in MSKCC Urgent Care.
Draws, drips, tests, smears, and pills.
Colored liquids that light up scans.

Beepers
And by midmorning many many people waiting for Urgent Care.
Good thing we arrived at the crack of dawn. Those poor people in the hallway…and only ONE obvious bathroom??? Sheesh. While Josh was doubled over the toilet there was a moaning woman rattling the door entreating “Please let me in!” I had to inform her we were in the middle of an event that would take some time. So Sorry.

Some tests came back: C diff is confirmed so far, with a CT scan confirming inflammed colon, and the good news that the pneumonia is resolved.

It took all day, but Josh didn’t need to be admitted (phew) and we came back to the hotel, to “drink fluids” and take temperature and rest. Josh konked out.

So Josh had a rough and painful night, and now he’s noddy, moany, drinking fluids, sleeping for long stretches, breathing, and I suppose hoping not to wake up to go to the bathroom again.

Swallowing gatorade, Joshua said,
"Tastes like soccer."

It will be several days before I try to make airline reservations again…
and now I'm off to my temporarily highest calling: buying flexible straws.

SPRUNG

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!

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!

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.

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…” His white count is up to 14 or 15.

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)

 

 

 

 

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.