Wednesday, November 30, 2011

Tired and scared and moving soon (day 35)

Good evening.

Nancy is clearing moving into the next phase of her journey here, in several ways. Today she had a lot of physical therapy, including time in the neuro chair by the window, and sitting on the edge of her bed. She's apparently been on the PM valve for most of the day, and she is one tired cookie. When I got here, her first words to me were "they're killing me". I imagine the work with her core muscles and diaphragm are exhausting.

Her voice is a croak, and very soft so I have to lean near to hear her. We also got to talk a little, finally. She has been really paranoid about our relationship, and after I reassured her, she's been very sweet. She's still very fearful of being left alone, for example, she got really frightened when her nurse took her 'lunch' break for an hour last night, and no one came in and checked on her the whole time.

Tomorrow she is going to move to what they call a "step-down" ward, on the 14th floor of Moffitt, 5 floors directly above where she is now. It's a lower level of care than the ICU, so it's a step-up in the sense that Nancy doesn't need the level of critical care she has been getting. But she will need to have someone sitting with her all the time, as she won't have a dedicated nurse. So the hospital will be arranging a 24x7 sitter. All the other things, physical therapy, medications, possible dialysis will continue the same. I believe we can point to this move as the time when Nancy is no longer in critical condition.

This is also a good opportunity to come and visit. Let me know if you plan to come. Several family members will be here tomorrow, and I'll be back in the evening, but Friday morning, and time over the weekend are all open. You don't have to do anything or bring anything, as Nancy is in a sensitized state of existence, like she's been on a long silent retreat. She might want to talk, or not. She might be having physical therapy, or resting. But company would be good., especially if you can hang out for a couple of hours or more.

Got more goodies on my doorstep last night, tangerines and an excellent spicy stew. The six of you who have brought me food are the best, you know who you are. Plus we have housekeeping help every two weeks, and yesterday was the day. So the temple is sparkling clean, and I'm pretty well nourished.


Tuesday, November 29, 2011

A little hoarse... (day 34)


God bless Meg, her nurse today. She pestered the ear-nose-throat crew to get Nancy talking, and they changed her trachea tube, putting a new one in that is same size, but without an inflatable inside collar. This gave her enough extra room that she can apparently talk with the Passy-Muir valve!

I say apparently because I haven't heard it. Second hand reports are that her voice is very hoarse, as vocal cords that haven't seen use in four weeks are getting tested. Nancy was on the valve for a half hour today (plus she got a workout from the physical therapist) so she's pretty tired and quiet tonight. I expect they will put her on the valve a bit longer each day.

Kidneys are Real Good, she apparently put out 1.9 liters (!) of urine yesterday. She has a new attending oncologist, Peter Sayre on two week rotation, a very respectable and senior guy. He confirmed that her cancer is in remission, her infections seem gone, and she will be tapering off the remaining prednisone dose very slowly over a couple of months. From his point of view, they aren't going to be changing much, the idea is to preserve her very gradually-strengthening immune system, and keep the graft/host disease from reappearing.

So Nancy should move to some kind of step-down ward this week, and we're going to be talking about physical therapy a lot for the next month or two.

Just chatted with her night nurse, Sharlene, who has been caring for patients all around Nancy, but not for Nancy herself. Cheerful, upbeat, young, and happy to see Nancy progressing. It's refreshing to get a perspective like that. So easy for me to lose my sense of joy about her improvements.


Monday, November 28, 2011

The power of the pee prayer (day 33)

Good evening, everyone.

Today I get to report... Nancy's kidneys seem to be back to normal :-) Yesterday she cranked out a full liter of urine, and today she is on track to match it. In fact, they are starting her on a diuretic to encourage her body to surrender the rest of her excess fluid -- and they wouldn't do that unless her kidneys were good. I suspect they will cut back on her dialysis, as Nancy's (BUN and creatinine) blood tests are all showing normal values. No further signs of infection, either, as her white blood cell and other counts are pretty normal too.

One of our friends spent the morning here, and encouraged her to work on her breathing and hand exercise. Nancy's comment: "she's bossy!" Then she got visited by physical and speech therapists, who tried her on the Passy-Muir valve again. She still cannot exhale much air past her tracheostomy tube, so she won't' be able to use the valve and talk until the tube is exchanged for a smaller one, or the remaining swelling in her neck subsides. We also had another great nurse today, Robert, who mostly works in an oncology ward at Mt. Zion Hospital. Nice to have someone experienced with cancer patients.

So I'm sitting with a pretty tired girl tonight. We're mostly just doing the ritual of rubbing her sore neck muscles, scratching her head, and moisturizing her hands and feet. No fever or any other kind of problems, so we are a day closer to moving out of the ICU. One of my friends wrote me of her experience of reclaiming her body, after major surgery and a lot of time in the hospital. I shared her note (along with others) with Nancy tonight, and I think the perspective is going to be very helpful. Nancy has a couple of months of reclaiming ahead.

Janet (her sister) is also here with me, and we're hoping Tina (who married us five years ago) can stop by later tonight. Tina's been a great source of support through our entire year.

Tomorrow I'm taking the day off from work to handle a bunch of overdue tasks, legal and financial, get stuff delivered, etc. But I'll be back here in the evening, and I'll continue sending daily notes to you. These notes help me keep a healthy perspective, as well as keeping you all up to date.


Sunday, November 27, 2011

Physical therapy and football (day 32)

Another uneventful day. Thank god :-)

Today we had a few visitors, her sister and a friend from high school days. Her nurse has been pushing her to cough more, take deeper breaths, and build up more strength so she can talk with a valve on her trache tube. Apparently it takes effort to use the valve, and even though Nancy hasn't been able to use one so far, it should be possible for her.

She's also getting coaching to move her feet and hands, to start actively trying to strengthen and push her body. That's the direction towards recovery, and her neurologic function will improve as she uses what she has. I'm picking up some soft rubber balls on my way home, for her to exercise her hands with. If things continue to improve and stay boring, she should move out of the ICU this week.

We watched the Raiders beat Chicago, and again moisturized her hands and feet, something I should just do every time I visit.

Someone left a little collection of fresh vegetables on our doorstep today, and I'm not sure if they are for me or the buddha. So they're on the altar at the moment :-)


Saturday, November 26, 2011

Steady progress (day 31)


Again, today was all about steady progress, no big news. Nancy continues to look and feel better, is smiling more and talking more. It's still frustrating to read her lips, for both of us. Her medication levels all seem stable, her pulse, blood pressure and temperature are all good, and she's been awake and watching football all afternoon. Apparently, the word for the day is "all" :-)

Marianne put her into the neuro chair again, and we all enjoyed the million-dollar view on the other side of the ICU, looking north over Golden Gate Park, the bay and bridge, and Marin headlands. Nancy had more fluid removal today via the dialysis machine, and no cramping this time. She's dozing now, which is common after she's been on the machine. Marianne is now mixing up her food formula, which goes into a bag and gets delivered by a separate pump at intervals through her feeding tube.

Babbas (Dr. Andreadis) dropped by and commented on how she is continuing to look better each day. He looks happy; she was having a textbook recovery until she got the infection, and I think he takes her recovery personally. I washed her hair today, and spent some time rubbing moisturizer into her hands and feet. The nurse commented that I could be earning $150 an hour doing that professionally, but it's honestly more fun to do Nancy. I can't imagine providing this kind of care for a living.

Janet and I are the only two visitors that Nancy has had since Wednesday. Friends are dropping by tomorrow afternoon and Monday morning, but there is room for more, if you want to come see her. Just drop me a note if you need more information.


Friday, November 25, 2011

Return to spirit (day 30)


Today I'm seeing some of Nancy's spirit. She finally has her head turned to the left side of her body, and she did that herself, so she is consciously stretching. Marianne, one of our favorite nurses, said that she had a good physical therapy session this morning, and is continuing to slowly improve. And perhaps most important, when I got here and started to chat, she said (lip reading here) "Don't talk. Scratch my head."

We're watching the LSU-Arkansas football game on TV, and the dialysis tech just arrived to set her up for a few hours of hemodialysis. Everything else is pretty much the same, normal temperature, good vitals, 400ml of urine per day, no odd cardiac events. Later in the day, Marianne is planning to put her in the neuro chair again for a trip to the window. I'm going to get some disposable washcloths, and wash her hair this afternoon. And try to tend some of the mounting backlog of "paperwork" sitting on my laptop, balance checkbooks, reply to emails, etc.

Someone sent her a very nice orchid that arrived yesterday, but the card was missing, so I have no idea who it came from. If you are on this list, can you please send me a note? Unfortunately, she can't have live plants in her room, so I brought it to the doorway and showed it to her, then took it home for our buddha altar.


Thursday, November 24, 2011

Thankful (day 29)

Happy Thanksgiving, everyone!

I am indeed thankful that Nancy is recovering, and also thankful for all your kind wishes and support. I'm sitting with Nancy now, with the odd combination of meditation music and soundless football on the TV. Nancy had a lot of pain last night, so she's on more painkillers, and has been dozing all day. She hasn't asked for anything, or opened her eyes for more than a few moments.

Her temperature is up a little, to about 100, and her pulse has been steadily on the high side, but there haven't been any blood cultures or test results to suggest an infection is back. She is still on at least two antibiotics, the nafcillin for her original infection, and ciprofloxin (instead of zosyn) for the secondary infection she got a week ago. She is also on two antiviral drugs, ganciclovir and voriconazole. Hard to imagine an infection surviving with all those going. She's getting another unit of blood today, in fact, she's been getting blood and/or platelets several times a week. Her kidneys are still working slowly, making 300-400ml of urine a day. We had another discussion about her trachea tube size, and what would be necessary to allow her to speak. The consensus is that, with everything still going on, they don't want to take the risk of downsizing it yet. But they are going to deflate the internal collar, so that she can continue to move more air past it. As her swelling goes down, maybe she can get to the point that she can speak soon.

I'm more rested after a full night of sleep. Our cat's wake me each morning around 6:30, looking for a can of food, and I simply threw them out of the bedroom today, sacked out, and slept until 8am. I had some fun baking pumpkin pie, and will be going to the family feast around 4pm. I've brought her (Pathways mystery school) candle to take her place at the dinner table.

Just had her cancer doc drop by, Dr. Andreadis, with one of his fellows who has been on top of Nancy's situation ever since she got here. It's always good to see them, and we talked about starting her on an SSRI (antidepressant) to help with her long neurological recovery. Andreadis (we actually call him Babbas, because his first name is unpronounceable) tells me that depression is common at this stage, and actually indicates that her recovery is going well. As Nancy gets better, she's more aware of her current limitations. And of course, she's been staring at the same room for four friggin' weeks.

They also told me that Nancy not only got out of the room in a neuro chair a couple of days ago, but she was able to stand with assistance to get into it. The first time we tried the chair, last Sunday, it was a bed-to-bed transfer. I imagine it felt good for her to be standing, even with the help of two people.

We have much to be thankful for. I hope this note finds you all enjoying a feast with friends and family, thankful for your health and well being.


Wednesday, November 23, 2011

Learning to connect (day 28)

Hello, friends.

Yes, a full lunar month and we are still here. Much better off than a month ago, all things considered.

We had a very quiet, connected visit tonight, as Nancy's recovery proceeds slowly and steadily. We didn't really say much, I mostly just held her hand, and rubbed her shoulders and neck a bit. Some of my friends are very experienced with extended stays in the hospital, and have been giving me good council on how to be with Nancy, what some of her signals may mean. This is enabling me to connect with her really well, without any talking at all.

She did have two more short bradycardia events this morning, which has the entire medical team a bit puzzled. There is no apparent reason, nothing triggers them, but her blood pressure and pulse drop very low for a half-minute at a time. There are some ways that neurosurgery and/or massive infection can trigger this, by effecting the sympathetic and parasympathetic nervous systems, the more automatic part of us that regulates heart rate. It could be temporary. So they are going to keep her in the ICU for at least a few more days.

One of my friends also pointed out how my last email sounded weary, and it's true. I am. I left work a little early today for the holiday, and I'm heading home early to bake a pie and go to bed early. I'm looking forward to three full nights of sleep this weekend. Tomorrow I'll be back midday, then I'll be having dinner with Nancy's family. Until then,


Tuesday, November 22, 2011

The word is 'more' (day 28)


Life in the hotel is continuing to improve, bit by bit. Nancy is much more awake today, and was watching TV when I got here. I think the word for the day is "more". More awake, more dialysis, more urine production, more progress. But still no talking and very minimal arm movement. It's pretty clear that she will need a smaller trache tube in order to talk with it in place, and that will probably wait for a few more days. No decision yet on her move out of the ICU, but it will almost certainly happen this week.

I think her spirits are better, she's smiling more. They are removing more of the staples in her surgical wounds tomorrow. And her sister and another friend will be here in the morning.


Monday, November 21, 2011

The 12 days of Nancy (day 27)

Today, Nancy sleeps. Apparently, she's been pretty much out of it all day, and everyone seems to agree that sleep is a good thing. She's finally comfortable enough to sleep soundly, and her healing and recovery will speed up with more of it. Everything continues to improve, except her muscle strength, which can't be evaluated when she's asleep. Her kidney output is steadily increasing, even though she had dialysis again today. Yes, the pee prayers have worked.

I do think she is depressed, and perhaps feeling beaten down and withdrawn after nearly four weeks in the ICU. I took Nancy's sister Janet out to dinner during the nursing shift change, and we had a little time to talk about the whole thing. It's a lot, and I cannot imagine how Nancy feels, unable to move her arms or talk for weeks. On the way home tonight, my restless mind started to catalog everything that Nancy has been through, and it's a pretty horrific list. Even put to music. Now that I've destroyed "The Twelve Days of Christmas" for myself, I might as well share it. The numbers are accurate.

In the year 2011, the fates have given me...
        twelve weeks of steroids
        eleven rounds of dialysis
        ten teams of specialists
        nine cardiac episodes
        eight different catheters
        seven antibiotics
        sixty blood transfusions
        five months in the hospital!
        four major infections
        three rounds of chemo
        two spinal surgeries
        and a stem cell transplant for leukemia!

Oh, ouch. It's far easier to be present with what is today than to try to take in the totality of it all.

There is some more good news. Janet tells me that her oncologist thinks she will move out of the ICU soon, probably before Thanksgiving, possibly even tomorrow. Now that is something I can give thanks for.


(PS - another friend left dinner goodies on my doorstep tonight. I can't tell you how I smile when these things arrive. And I now have enough food to carry me into Thanksgiving. Although the applesauce probably won't last past breakfast :)

Sunday, November 20, 2011

Fever down (day 26)

Update to the update, Nancy's fever dropped this afternoon back to normal ranges. The lab found that the secondary infection was on the IV line (PICC line) in her left arm. As soon as it was removed, her fever started going down.

Steady progress.

Getting out of bed (day 26)

...where it's still around 100°.

Nancy slept well last night, they tell me, as she continues to run a fever. I'd say she continues to look a little better each day, as the swelling goes down. She cranked out about 350ml of urine yesterday, so her kidneys are waking up and going back to work. And she's having ongoing neck pain, getting medication for it.

Today we're watch some football, after a little journey out of the room using a "neuro chair". She's been in here for more than three weeks, and a change of scenery seemed like a good idea. We went out to a window for a while, to watch the large weather, as a Pacific storm comes through. I'm not sure if Nancy thought it was worth the activity and discomfort for a half-hour journey, but I think it was good to move her around.

Her sister-in-law and mother-in-law visited this morning, and I expect her sister will be back later today too. I feel more rested, after watching Cal lose a close game, and getting to bed earlier than usual last night.


Saturday, November 19, 2011

Another infection (day 25)

Hello again, I'm just home from the Hotel, where Nancy's sister Janet is spending the evening with her.

Today, Nancy is running a fever, in the 100-101°F range. This is the secondary infection, for which she is already getting antibiotics. Her doctor is phlegmatic...the good news is that her immune system is working, with a somewhat elevated white blood cell count and the fever. The bad news is she has to go through this, and be uncomfortable. I suppose it's also bad news that she has the infection in the first place, but at this point in the journey, we can't afford to look too far backward or forward. It is what it is.

The news about the infections is pretty good. Her original MSSA infection no longer shows up on her daily blood cultures. The new infection is indeed susceptible to the potent antibiotic mix she is getting. She still takes 30mg of prednisone a day, which damps her immune system response, but apparently that is not stopping her immune system from showing up to take on the bad guys. I think this is the first time since the bone marrow transplant when we can stand back and say, yep, the transplant is working the way we want....two months ago, it was starting to attack her (graft vs. host disease), which was expected but not desired.

She's as comfortable as someone with a fever (who can't really talk or move her arms) can be. Also, she is getting some air past her trache tube, so she should be able to talk soon. We watched some football, talked a bit about her fears, I rubbed her aching back and neck. Another one of our dear friends has gifted me with food this evening, so I have the luxury of doing nothing for a few hours. I plan to watch Cal beat Stanford, my first solo TV in four weeks :-)

Oh, and Nancy's kidneys are picking up the pace. She's making about 20ml of urine an hour now, even with all the dialysis. The nephrology doc said, "see, I told you so."

Now I pray for her fever to break. This is a pretty ancient prayer, our ancestors have asked this for millennia. The altars glow in our house.


Friday, November 18, 2011

Downright perky (day 24)

Good evening!

Ah, an exclamation mark. The news must be better, and indeed, today has been a quiet day, with more steady progress. Nancy just looks and feels better. She had another round of dialysis today, to simply remove more fluid, not to cleanse her blood. So she lost another 2 liters (5 lbs), bringing her four-day total to 11.8 liters. Her hands are still puffy, but not like they were at the beginning of the week. And in all other ways, there are small improvements. She is moving her arms a tiny bit now, flexing her knees more, moving her head and shoulders.

I think she produced about 250ml of urine in the last day, still not much, but reasonable given all the dialysis. She's still on Zosyn along with the nafcillin, and I haven't heard anything from the doctors about her secondary infection. Since they are still using the same antibiotic, it must be a common gram-negative bacillus infection that is not resistant, thank god.

She looks downright perky today, telling me that her nurse is great, that I shouldn't squeeze her hand so much, that she wants her head scratched. She still can't talk with the tracheostomy, but is alert enough to enunciate clearly so I can read her lips better. Believe me, it's much harder to read lips when someone is mumbling and half asleep. We're starting to talk about moving her out of the ICU again, in four days or so, if everything continues to go well.

One of our friends left a cooler on our doorstep yesterday, with chili, soup and corn bread. Pretty darn awesome for a late dinner. I'm very grateful.

I was really shaken up by yesterday's cardiac event, but feel much better now that I can see Nancy looking better and better. Also, I've been receiving some wonderful, supportive emails. Thank you all.


Thursday, November 17, 2011

Not boring, dammit (day 23)


Well, today hasn't been so boring. Nancy's daily blood culture results this morning showed that she has a secondary infection in it's early stages, 'gram negative bacilli'. This is something that the doctors are jumping on, of course, but they aren/t particularly alarmed at this point. It could be a common urinary tract infection or something in her intestines or lungs -- this kind of bug is part of the normal "flora", the bacteria on our bodies. Tomorrow morning they will know what kind of bacillus it is, whether it happens to be a resistant strain, etc. In the mean time, she is getting IV Zosyn, an antibiotic combination that is commonly used for this.

One of our friends was here this morning when she got the news about her secondary infection, and she asked our friend to call me. The upshot was, she wanted me to come to the hospital, so I packed up my work computer, and I've been here all afternoon.

She also got more dialysis today, removing another 3 liters of fluid. Again, she is tolerating this well, and her blood pressure has generally been solid. She has lost almost 10 liters of fluid via dialysis in the last three days, a truly amazing amount. The swelling in her body is visibly reduced.

And she had another cardiac event today, the first one since, I don't know, last week perhaps. For about a minute, her heart rate and blood pressure dropped very low, what they call "bradycardia", and she became unresponsive. She bounced back out of it on her own. I was rubbing Nancy's shoulders when it happened, I saw her fade away from full consciousness right as I'm looking at her, and I was the one who called for help even before the machine alarms went off. You can envision this. Patient's husband pops out of her room, sees a nearby ICU doc, and calmly says "doctor, I need your help in here Right Now." I had four people in her room in 20 seconds, as the alarm starts going off. What an up close and personal experience of how fragile our lives are.

We don't know why this happened again; it could be a lasting side-effect of one of the drugs she got last week, it could be related to her surgical recovery, maybe I moved her head the wrong way, it could be something else. But it does mean she's not getting out of the ICU tomorrow. The cardiologists want to watch this, and keep her on the monitor.

Janet has been here with me for the last couple of hours. Nancy has been sleeping a lot this afternoon since the dialysis, which is normal after losing so much fluid. In all other ways, she seems to be doing pretty well, making some urine, but not a anything like full production yet.

I liked dull boring yesterday better. We're not out of the woods yet.


Wednesday, November 16, 2011

No news is good news (day 22)

No news is good news, so they say :-)

Nancy had another day that was uneventful. They did several more hours of dialysis, and pulled 3.8 liters of fluid from her body, which is more than I thought was possible. She tolerated it well, and looks less puffed up because of it. Still little urine production, but that's to be expected with that much dialysis. She is still very weak, still unable to talk with the trache tube in place, still breathing on her own with good steady vital signs.

Her sister Janet is also here this evening, and is staying at their dad's house in Novato for the week. Being a nurse, she is watching everything, commenting, and schmoozing the staff. It's good to have more support. Janet brought a large clock and calendar for Nancy's room, so she can track the day and time easier.

Everything else is fine, although they are still working out her pain management. Nancy has a lot of discomfort in her neck, where there was major surgery, the trache tube, and a catheter. No wonder. She also metabolizes pain killers pretty quickly, so there is an ongoing discussion about how often to give her opiates, and in what form. She slept a lot today, so I expect they will change her medication schedule tonight.


Tuesday, November 15, 2011

Off the respirator (day 21)

Hello again, from the most expensive hotel in San Francisco...

News continues to be good! I had a lengthy chat with her ICU doctor, and we're working towards getting her into a normal medical ward later this week. He thinks that, if everything continues going in the same direction, she might be able to move out of the ICU on Friday or Saturday. Nancy needs to (1) be breathing on her own most of the time, (2) continue to be stable, good blood pressure, etc., and (3) tolerate dialysis without any problems. So far, she is meeting all three criteria :-)

Nancy is off the full respirator, and now has a different machine that simply provides a little pressure support. They were wrapping up her respirator when I got here tonight, and the new machine will be used at night to make life a little easier for her.

She's had two hours of dialysis today, just finishing up in a few minutes. They removed more than 2-1/2 liters of fluid from her (!) without any blood pressure problems. That's a good six pounds.

The doc says that the team believes the infection is pretty well overcome now, which is why they can safely remove so much fluid. She'll be on antibiotics for another four weeks, of course, and her kidneys are still barely working, but everyone expects her kidneys to recover and everything else to continue to improve.

She still cannot talk. After she's been breathing on her own consistently for a few days, they can look at reducing the size of her trache tube, but that is a one-way change, and they won't do that until they are sure she doesn't need respiratory support. In the mean time, the respiratory tech is going to move her in the right direction tomorrow by deflating the trache collar inside her trachea. This will let her get some air past the trache tube, and perhaps give any swelling a chance to subside.

Everyone is pleased with her progress, especially me. She is tired, impatient, experiencing ongoing pain in her neck. And unable to move her arms much yet. So there is plenty of recovery ahead.

Today her sister Janet flew in from Connecticut, and visited this afternoon with her sister-in-law Kathy. Janet will be here for a week or so, and I'm happy she's helping. Other friends dropped by around 6, just before I arrived. She's had a busy day.


Monday, November 14, 2011

Small steps (day 20)

Hi, everyone.

No big news today, just small steps. She is clear, aware, and a little grumpy :-) The first thing she said when I got here tonight is "They're lame. The nurses are all lame." Actually, I think she's had the A-team because she was so critical, and is now getting the B-team. They're not bad, they just aren't quite as attentive and good at anticipating what she needs. For example, her nurse today took the warming blanket off her some hours ago, and with continuous dialysis moving her blood out through a lot of tubing, her core temperature dropped down to about 97°F. She was cold. So I suggested the warming blanket, and the nurse readily agreed.

All her vitals are still solid, good pulse, blood pressure, temperature. They are taking Nancy off the continuous dialysis now, and will give her the more normal kind of dialysis probably the day after tomorrow, when she needs it. In the mean time, we get to see if her kidneys pick up the work, as she's been making just a little urine. I think they've taken two or three pounds of fluid weight off her with the continuous dialysis.

She still can't speak, but has spent the day breathing on her own. The docs are now putting her on minimal breathing assistance at night, and the more she breathes on her own, the closer she is to getting out of the ICU. She also spent some time with physical therapists today, who had her using a bicycle-type device to exercise her legs. Her grip is strong, and she moves her shoulders and head, but still can barely move her arms.

I'm starting to really drag, I've been yawning all day even after more than 7 hours of sleep. I'm going to shoot for 8 tonight. I think the emotional drain is wearing on me more than I know.


Sunday, November 13, 2011

Losing track of time (day 19)

Heh, I finally forgot how many days we've been here. It is indeed day 19. I think that means it's time to send updates when there is news to report. So I may not write again until Tuesday, if all continues to go well.


On Nov 13, 2011, at 3:11 PM, Tom Childers wrote:

> Everyone,
> Each day when I come here, I look at Nancy, and get an impression. The last few days, my impressions have been steadily positive, as I see Nancy's swelling go down, her pallor improve, and sense her general energy level coming back. It just feels like she is overcoming the infection, or perhaps has overcome it. We seem to be out of the really critical period, and into a time of regeneration, as her strength and speech and physical ability return.
> She's spending more and more time off the respirator each day, and today we tried the Passy-Muir valve again, which would let her speak. Now she can breathe with it in place, so she is able to exhale past her trache tube. But speech is not there yet, perhaps because she still has a size 6 tube. They are discussing a change to a smaller trache tube, which will make speech easier. That would also be an indication that they think she is stable enough and oxygenating well enough that a smaller tube will be fine. A size 4 is the smallest, so the step after that would be removal of the trache entirely.
> The dialysis has been cranked up to remove 25ml of fluid per hour from her body, so she will gradually lose the excess faster. This is also a good sign, as the last time they did this, her blood pressure dropped. Now it's steady. There have been no more issues around her pulse and blood pressure for over two days. She is still making just small quantities of urine, but no one is worried. Tomorrow, they will probably switch back to intermittent dialysis instead of the continuous setup, another positive step.
> Today she has either been completely present (and trying to talk!) or taking a nap. No more periods where she just seems fuzzy or withdrawn. She wanted me to help her write a task list (!) today, but I'm not good at lip reading, and we gave it up after a while. Knowing Nancy, she must be feeling a bit more like herself. I'm amused that this is the first thing she wants to do.
> Her heme-oncologist dropped by to tell me that her tachrolimus level is where they want it. I asked her about the status of Nancy's leukemia, and she assured me that they check the blood cultures for abnormal cells with regularity, and Nancy is still all clear. That's a nice piece of good longer-term hasn't been on my mind much, as she's been facing more immediate problems. Perhaps this is another good sign, that there is room in my awareness to even ask the question.
> What a fine day. The 49ers are even winning :-)
> Love,
> -tdc

Positive impressions (day 18)


Each day when I come here, I look at Nancy, and get an impression. The last few days, my impressions have been steadily positive, as I see Nancy's swelling go down, her pallor improve, and sense her general energy level coming back. It just feels like she is overcoming the infection, or perhaps has overcome it. We seem to be out of the really critical period, and into a time of regeneration, as her strength and speech and physical ability return.

She's spending more and more time off the respirator each day, and today we tried the Passy-Muir valve again, which would let her speak. Now she can breathe with it in place, so she is able to exhale past her trache tube. But speech is not there yet, perhaps because she still has a size 6 tube. They are discussing a change to a smaller trache tube, which will make speech easier. That would also be an indication that they think she is stable enough and oxygenating well enough that a smaller tube will be fine. A size 4 is the smallest, so the step after that would be removal of the trache entirely.

The dialysis has been cranked up to remove 25ml of fluid per hour from her body, so she will gradually lose the excess faster. This is also a good sign, as the last time they did this, her blood pressure dropped. Now it's steady. There have been no more issues around her pulse and blood pressure for over two days. She is still making just small quantities of urine, but no one is worried. Tomorrow, they will probably switch back to intermittent dialysis instead of the continuous setup, another positive step.

Today she has either been completely present (and trying to talk!) or taking a nap. No more periods where she just seems fuzzy or withdrawn. She wanted me to help her write a task list (!) today, but I'm not good at lip reading, and we gave it up after a while. Knowing Nancy, she must be feeling a bit more like herself. I'm amused that this is the first thing she wants to do.

Her heme-oncologist dropped by to tell me that her tachrolimus level is where they want it. I asked her about the status of Nancy's leukemia, and she assured me that they check the blood cultures for abnormal cells with regularity, and Nancy is still all clear. That's a nice piece of good longer-term hasn't been on my mind much, as she's been facing more immediate problems. Perhaps this is another good sign, that there is room in my awareness to even ask the question.

What a fine day. The 49ers are even winning :-)


Steps toward speech (day 18)

Hi, friends.

Again, we have a day of incremental improvement :-) Nancy went off the respirator for most of the day, and was still breathing for herself when I left at 7pm. Since dialysis is ongoing, it's harder to tell if the "pee prayer" is working -- she just isn't making a lot of urine, since the machine is doing much of the work -- but she is making some, and so her kidneys are recovering. All vitals look good, and she hasn't needed much medication to keep her blood pressure up or manage her pain.

We tried fitting her with a Passy-Muir valve (PMV) today, a device that would let her talk with the tracheostomy. She still cannot breath out or speak past her trache tube, and it's not clear why. It might be that she still has swelling in her throat, or it might be that the tube is a bit large, or something else. It's not a problem, except for the fact that she's on an enforced 16-day silence-and-fasting journey, and she would really like to be able to communicate. Tomorrow, she asked that they try it again.

She had a half-dozen visitors today in addition to moi, including two couples that we are close to. Thank you all for coming by to see her. And we watched some college football, normally one of her favorite things. Not a bad day, in fact, a good day. Steady. Progress.


Friday, November 11, 2011

In the right direction (day 17)

Slow steady progress. Some mantras need to be chanted a long time.

Today's mixture of news continues in the right direction. Nancy's been alert all day, her neurological tests are better, she has a little more strength in her hands and moves her feet readily. She can hold her head up. She can't yet move her arms, though. Her respirator is providing minimum assist, and they will try taking her off it again tomorrow, so she is breathing oxygen on her own. When I got here at 6pm, she was trying to communicate, and feeling frustrated again. Which is good. She had a couple of visitors today, and several folks are coming to visit tomorrow, which she's happy about.

Speaking of happy, she actually smiled at me when I got here, for the first time in days. That's a good sign, and it made my day.

Yesterday's urine production was indeed better, 405 ml, but today it's slowed back to a trickle. That may be partially due to the fact that she's been back on continuous dialysis, slowly removing her excess fluid, for 24 hours now. With the dialysis, all kinds of blood chemistry values are improving, BUN, creatinine, etc.

Heart, temperature, other vital signs all continue to be good and stable. Chant the mantra and continue to pray for pee.


Thursday, November 10, 2011

Mixed news and altars (day 16)

Good evening from the hotel, where all is quiet today.

More cautious optimism. Nancy has been sleepy and groggy and pain-medicated a lot today, but the pee-pee prayer seems to be working, as she is consistently making about 20ml per hour of urine. That would be, uh, 480 per day, definitely headed in the right direction. Her face looks less swollen, and her complexion is a little ruddy, probably because she got a couple of units of blood today.

Here is the mixed news for today (I'm getting used to every day bringing some of this, and some of that). Her vitals all look good, her temperature is normal, and there have been no more cardiac surprises. And...she's still on the respirator, still on dialysis (and tolerating it well), still not moving her arms or feeling a lot in her hands, or able to talk yet. The MRI from last night didn't show anything significant, no new abscess, or anything to suggest that she has any kind of a problem in her head. (Almost tossed a joke in here, but somehow I just can't do it :) In fact, they removed the EEG monitor, so that's one less piece of equipment clustered around her.

She's is retaining something close to 40lbs of fluid, so it's important that her kidneys get going. The dialysis is helping, but I'm still praying for her kidneys to pick up their job, and start getting rid of all this edema. Go little gals.

I mentioned my ritual of lighting our home with candles each night when I return around 11pm. Here are pictures of our main altars from last night. The kuan yin is up in the living room/kitchen area, right where I make dinner and sort mail and feed the cats. The buddha is in the entry way on the first floor, the first thing I light when I enter. It is about 30" tall, made of marble, and sits at the exact center of our house. The incense fills the house all evening, and I often sit down there with it, feeling what I need to feel and petting our cats, who follow me throughout the house. This ritual each evening is totally helping me keep my sanity. The candles burn all night.


Wednesday, November 9, 2011

Rollercoaster (day 15)

Hi, everyone, today has been more of a roller coaster.

Overall, I think she's making progress. The scary part is that Nancy's blood pressure nose-dived last night for a few minutes, with her pulse below 40 and barely detectable for a minute or two. This is one of those alarms that brings everyone running ("code blue!"). She was on dialysis at the time, which can be a trigger for low blood pressure. She's now on norepinephrine, a drug to boost her blood pressure, and her vitals have been stable ever since. I asked if this is one of the things that happens when someone is losing a battle with an infection, and her very experienced nurse said, "no, not in my experience". As alarming as this is, no one seems to think it's a particularly bad sign.

Her hands and feet are warm for the first time in days, so more blood is flowing through her periphery. This explains the low blood pressure, and is also a normal body response to infection. Is her body picking up the fight? Is the infection getting worse? No one can say for sure. So much of the complex story is like this, tons of data, little real information. Such an inexact science. But her body temperature is normal.

Because of the alarm, she now has an EEG monitor, electrodes on her head. And she's getting another MRI right now; they are taking a look at her skull to make sure there isn't another abscess somewhere that is impacting her heart function. The cardiologists are investigating, but seem to take it all in stride.

The good news is that her kidneys are picking up the action. I'll just be technical, there is no other way to communicate this. Her urine output was 300 ml on Monday, 300 ml on Tuesday, and 200 ml in the last 12 hours. We are shooting for more like 1200 to 2000 ml per day when they are back to normal. So she's heading in the right direction. Another piece of good news is that the doctors have gotten her immunosuppressive drug level back where it should be. This was causing hallucinations two weeks ago, and was one reason she was originally admitted to the hospital. I think her prednisone dose is getting lowered tomorrow too, which should help.

One of our dear friends has a young daughter who has learned about prayer, and he sent a note today: "the prayer is, please Jesus, let Nancy go pee pee. How can God not answer that prayer?" Perhaps the prayer is working.

She was on a lot of pain meds when I saw her this evening, her neck has been hurting a lot, so she was pretty groggy. I'm waiting until she comes back from the MRI around 9pm.

I can't believe it's been more than two weeks. Please, Jesus, let Nancy go pee pee!


Tuesday, November 8, 2011

Waiting for improvement (day 14)

Hello, friends. Like yesterday, there is little to report on Nancy's progress. She's still needing the support of the respirator most of the time, and dialysis. The antibiotic treatment continues, she's still very frustrated, still can't talk, or move very much. But she's alert, all her vitals look good, and had a couple of visitors today, which she really appreciated.

I'm doing what I can to make her comfortable. And waiting outside right now, while the nursing shift changes. My days now have a curious, 3-way rhythm...I go to work in the morning, come here early in the evening until nine or ten, then back home to the "temple", where I light candles, feed kitties and myself, do some housework and handle bills, and sleep. I'm really grateful for our house, which has been a refuge through all of this.

It's time for her kidneys to pick up the load, for her breathing to strengthen. Her infection needs to continue to subside. Please continue to hold these intentions.


Monday, November 7, 2011

Cautiously optimistic (day 13)

Hello, everyone.

I don't have a lot to report today, not much has changed. Yesterday she was off the ventilator, breathing on her own for more than 10 hours, but today it's been less. Her kidney function is still very weak, she still cannot talk or move her arms. She's been sleepy a lot today. It feels like Nancy is resting more, still kind of depressed and frustrated that her recovery is so slow. It's hard to be patient, hard for me, certainly harder for her.

Her ICU doctor says he is "cautiously optimistic", a better phrase than we were hearing a week ago. He reassures me that this kind of recovery is going to have ups and downs, the thing to look for is small, gradual improvements. And we're seeing that.

She didn't have any visitors today, but two friends are planning to come tomorrow afternoon. I'm back at work pretty full-time, after burning up all my sick time over the last 2-1/2 weeks. I'm going to try to move my schedule around so I can come see her earlier each evening.


Sunday, November 6, 2011

The mantra (day 12)

Slow, steady progress. It's a mantra.

Today has been really frustrating for Nancy, she has said so repeatedly. She still can't talk, but she's mouthing words often. She's got more strength in her legs, still barely able to move her hands. And she's holding her head up on occasion. Some parts of the day have been really uncomfortable, with a lot of pain in her back and neck. She's been breathing on her own for nearly the whole day.

We've had a lot of visitors, her niece, brother, father, several friends...I think there were a total of eight. We watched some football, spent time trying to find comfortable positions for her by moving pillows, had some good conversations, got her to smile. At one point, we tried putting a Passy-Muir valve on her tracheostomy so she could talk, but her throat and neck still seems to be too swollen for that to work. Soon it will, and some of the frustration will be gone.

The neurologists are happy with her progress, and repeat that it will be weeks, perhaps many weeks before she has her strength back. Kidney function is about the same, maybe a little better. Oncologists are happy too, as almost all of her GVHD symptoms are gone. Yesterday, the dialysis removed a lot of fluid, so she isn't as puffy today. And the swelling on her neck is going down some each day.

She got really angry with me yesterday, and expressed a lot of frustration...and this is all good. They don't want passive patients in the ICU, she wants to get out of here, and that is really a good thing.


Saturday, November 5, 2011

About the ICU (day 11)

Good morning from the hotel :-)

Nancy is sleeping this morning, with little change from yesterday. All vital numbers are good, although she is back on the respirator. Her nurse tells me that her oxygen levels were dropping a bit, and they think all the edema (extra fluid) in her body is creating some congestion around her lungs. So she is getting another few hours of dialysis later today, as they try to help her body get rid of some of the fluid. Otherwise, she looks good, her color is good, and the swelling in her cheek (parotitis) is down a bit. We are still waiting for her kidneys to wake up, although there is a little urine in the bag each hour. She is on three antibiotics, an antiviral, prednisone, IV saline and electrolytes, tachrolimus, hydrocortisone cream, occasional pain medications, and a feeding tube in her nose. Hard to believe she is comfortable, but she says she is fine.

I should tell you a little about the place, this ICU. It's pretty amazing how good the quality of care is. The unit is L-shaped, like one big room with a desk and entrance at the crook of the L. There are 16 rooms, positioned all around the periphery, eight at either end. Outside each room is a computer workstation with a large chart spread in front, at bar height with a roll-around stool, carts and equipment positioned as needed. So it's very easy for any individual or piece of equipment to get to any of the beds in a few seconds, and all of Nancy's data, days of history are right there for everyone to access.

Nurses work 12-1/2 hour shifts, with a half-hour overlap for briefing, and are responsible for one patient for their entire shift. They have ALL been excellent: sharp, knowledgeable, they know what is going on, why, welcome my observations and questions, treat us both with kindness and compassion. The ICU doctors are similarly on top of things, and the entire staff seems to work together really well. Some commute from places like Sacramento or Modesto. They all seem to be in the 30-50 age range, and like being able to focus completely on one patient for their shift. Almost every other kind of unit in the hospital assigns nurses to multiple patients, as you would expect.

It's intense. The patients who come here are critical, so there are alarms going off, little storms of activity when something serious happens. I don't think they've lost a patient while I've been here, but I'm sure it happens regularly. The forces of Vishnu and Shiva are very present, as some actions are completely about preservation, and some require penetration, some form of destruction to create life. I could never put a catheter into someone's neck, suction phlegm out of a tube deep in their chest when they are struggling to breathe. Or perhaps I could, I'm just doing what I have to do every day we are here, and if I had to take uncomfortable action to save a life, I imagine I would rise in the moment.

Those of you who have done voice dialog or "parts work", read Hal & Sidra Stone's books, will appreciate the splits I sit in every day. This is a place that demands solid interior this, I mean that I have to negotiate and manage the parts of myself every time I step in. Child voices are in safe places, except for the one that looks upon the miracles in wonder. My fear of losing Nancy is ever present, so we bring him along with clear understanding that he does not get to run the show while I am in the ICU. The medical dude inside has grown quickly, can assess the monitors, IV pumps and respirator and urine bag in a few seconds while looking Nancy's pallor and breathing. I'm surprised at how grounded and calm this part of me is, and can feel the pull to be that, to be a nurse or a doctor. He is the one who runs the show most of the time right now, and he is good with the staff, putting them at ease, respecting them, doing what he can to make everyone as effective around me as possible. There is the reiki initiate, who helps manage the energy in the room, brings healing energy to Nancy, calls on resources I scarcely understand.

And then there just me, personal and feeling, loving Nancy, wondering what kind of relationship we will have as she recovers. I long for my partner, and reach for the patience and capacity to hold all of this in the coming weeks and months.

* * * *

Little gifts continue to delight. My engineering group at work sent flowers yesterday, so I came home at midnight to a lovely vase of roses and a note by the front door. Another friend made a rice bag compress for Nancy, that can be heated in a microwave and used to relieve aches and pains...and I cannot bring it into the ICU, because it's not sterile, dammit.

Nancy had a few friends and family visiting yesterday, and visitors are fine in ones and twos. She is in Moffitt Hospital 9ICU (505 Parnassus, on the 9th floor). 8am to 7pm are the best visiting hours. Come if you would like to be with her, talk to her, read to her. Hopefully her breathing equipment will be changed soon so she can converse, but right now, she's communicating mostly with her eyes, with nods and shakes of her head, with a squeeze of her hand. If you want to give me a call first, my cell number is 415 272-3565.


Friday, November 4, 2011

Slow steady progress (day 10)

Slow steady progress. All the vital things, pulse, breathing, blood pressure, are great. No more cardiac monitor alarms, thank god. She is still fully awake and present and spirited. For example, she didn't want me to go home last night, and I finally just had to push back so I could get some sleep. She is still comfortable, not in any pain, and spent the night listening to Mozart on her iPhone.

Today Nancy is off the continuous dialysis, getting regular dialysis once every day or two instead. This is progress, as continuous dialysis is something they only do for really critical patients. Her kidneys are starting to work again, although they aren't anywhere close to normal operation. The surgical drains have been removed, and neither operation seems to have any complications Later today or tomorrow, her breathing equipment will be switched so she can talk; right now, the tracheostomy tube is just letting her breathe, and it needs some kind of valve in order for her to talk. I think all of this indicates she is beating the infection, but she is still retaining a ton of fluid, and I think full kidney operation will be a big milestone.

The neurologists keep checking her, and she doesn't have the strength yet to raise her arms or legs, or fully open her hands. Since both abscesses were on the spinal cord, they tell me that it may take her months to fully regain her strength. There is a lot of physical therapy in her future. She also has about six weeks of IV antibiotics ahead, although she may not need to stay in the hospital for all of that.

I'm at work now, for the first time in a week, and will be back to visit this evening. I've gotten some remarkable, lovely emails from some of you (there are about 115 people on this list!) and one friend sent a Jewish care package, chicken soup and challah were on my doorstep when I got home last night. We both feel loved and well-supported.


Thursday, November 3, 2011

Fully awake and present (day 9)


Good news, Nancy is improving today! She is fully awake and present, saying things like "I love you" and "thank you" to me and her doctors. She can't talk yet, because of the tracheostomy, but she is trying to communicate. We're getting an alphabet board, so I can figure out what she wants to say.

Her strength is better, she can move her fingers and toes and arms and legs better. She is breathing on her own since about 9am. Also, her kidneys seem to be coming back, and she's starting to make urine again.

There is a gland in her neck that has gotten infected on one side, making her look like a chipmunk, but the doctors are not particularly worried about it.

She's not out of the woods yet, but her odds are a lot better. I can't tell you how relieved I feel. There are a bunch of doctors who've come by to check her out, her neurosurgeons, kidney specialist, the ICU docs, and they are all smiling. We've been looking into each other's eyes and smiling a lot, and I feel all goofy with relief. I'm reading your emails to her, and have been telling her all that has been happening to her. Her memory of the last few days seems pretty hazy, which is probably just as well.

Keep the "cards and letters" coming, and I'll read them to her. Love,


Wednesday, November 2, 2011

Out of surgery (end of day 8)

Good evening, everyone.

Nancy came back from surgery about an hour ago, and is resting in the ICU. The five-hour surgery went well, the neurosurgen Dr. Mummaneni said he's done everything he can do. The second abscess is drained, so now it's all up to her immune system and the antibiotics. She now has an incision and drain on her neck as well as the middle of her back, and has a tracheostomy, a breathing tube inserted through her neck, so she doesn't have it going down her throat any more. That has got to be a lot more comfortable.

She is clearly pretty exhausted by all this, only responding with weak nods when I ask her questions. She is not saying anything yet, although she should be strong enough to talk soon. She wanted to be warmer, so we have the warming blanket back on her, and she seemed glad to see Jim and Kathy (her brother and sister-in-law) and Cindy and Trish, close friends from high-school days. Now I'm staying with her for a while, before I go home to cats, a little dinner, and some much-needed sleep.

Nancy wanted me to talk to her, so I've read her some of the notes you have been sending today. We both appreciate all your wishes and support.

I'll be back with an update in the morning.


Neck surgery (day 8)

Hello, from the ICU...

Nancy just left for her second surgery, and will be in the operating room for three or four hours. This should be the last operation, and will drain her second spinal abscess, located at her C2 vertebra.

She was groggy this morning, but not in pain, not needing anything. I told her how much we all love her, relaying messages from her brother, sister, niece, and some close friends. All her vitals were fine all morning. The echocardiogram did not show any signs of infection in her heart valves, which is very good news. There were signs of some small abscesses in her heart muscle, but those should clear up along with the infection if and when her antibiotics start winning the war.

Our hope of course is that draining the abscess will push her over the edge toward recovery. We are looking for her blood pressure to climb, for her to be breathing well on her own, and ultimately, for her kidneys to start working again. But I want to be honest, her recovery is very much a 50/50 proposition according to her doctors.

So I'm praying for a perfect, effective surgery with no complications, for her safe return from the OR in about four hours, for her complete recovery. Prayer is starting to feel like an overused word for me -- is that all I can do? I've been able to bring reiki, to remind her that I love her, I choose her, I need her and want her recovery. And then there are the higher powers, the deep mysteries, the archetypal healers with ancient knowledge...I ask their attention, their assistance, their loving kindness to bring Nancy through all of this. Her spirit is great, and so is the challenge. We all ask their help.


Tuesday, November 1, 2011

Awake and responsive (day 7)

Nancy is off the anesthetics today, so she is awake and can nod yes and no. So I've been reading some of your lovely emails to her, and bringing her up to date on the day and time, and what has been happening to her. She didn't know she'd had surgery, and doesn't really remember much of the last few days, as far as I can tell. This is the first time in three days that she's been able to look me in the eye and I can see her.

She's not in any pain, although she still has bursts of atrial fibrillation, so she is getting pain meds. She still has the breathing tube, the dialysis catheter, the feeding tube, the foley catheter...and her kidneys are still out of action.

Now the neurosurgeons are looking at the second abscess, at vertebra C2 right under her skull. We may have more surgery tomorrow to drain this last abscess. I should know more later today.

By the way, I've gotten a dozen to forty responses to each of my emails, so it's been hard to reply to everyone. I do read them all, and really appreciate all your offers of support. I'll call as I think of things that would help.