Cremation today (day 7)

Friends,

I just picked up the message that Nancy will be cremated today at noon. Another step in her journey, and ours.

Tara has many forms in buddhism, and Lama Palden believes that Nancy has an affinity for White Tara, not the more commonly invoked Green Tara.  Oddly enough, the first thankga I was ever attracted to, and meditated upon, is a white Tara image.  I don't know if the image will be helpful for all of you, but I've attached one to this note, so you can see the visualization I'm working with.  I also have a print on her altar.

Nancy comes into my meditations very clearly. It's as though we are sitting together, connected as we did early in our relationship, even having some of the dialog we've needed to have. I've never had such a strong sense of someone's spirit after they have passed. It is reassuring, and also helping me get out of the house, and start to take care of some of the things I have to.  Today I went to the regular Wednesday morning session at Spirit Rock (vipassana buddhist center nearby) and really liked being in the practice there.  This afternoon I will be picking up Nancy's death certificate, so I can start some of the legal activity necessary.  And I have a call from work that I think I have the capacity to answer now. I plan to take another week off before returning, but I also owe it to my co-workers to help them keep the fires under control :-)

I so love being in our home alone. What a gift, that we built this lovely place together. I've only had one visitor since late October when she entered the hospital, and I think I'm finally ready to spend more time with our friends.

Nancy's remains will be transformed to ashes shortly. Again, please hold her in your heart.

Love,

-tdc

Ritual unfolding (day 5)

I'm back home after completing a simple buddhist ritual with Nancy, the Jones family, and our friends Tina and Karla and Sandra. Lama Palden, of Sukhasiddhi, was kind enough to come and bless Nancy's body in preparation for cremation.

Om tare tuttare, ture soha

This morning, I was able to find the beautiful orange and red sari Nancy and I used on many altars, took it to the mortuary, and Nancy has been bathed and wrapped in it. We added roses and incense to her and her wrapping, and had our final moments with her body. Palden-la feels that her spirit is still here (as opposed to traveling the realms and the bardo), and that Nancy seems to finally be able to take in the outpouring of love around her. I, and perhaps all of us, can take some comfort in the fact that our love is felt and received.

For me, the Tara invocation is now the core of my daily practice.  It is an unfamiliar prayer, so I am learning about the Taras and their capacities by doing, not by study. There is a whole visualization that moves through my mind as I meditate, I imagine the realms and the Taras depicted on Tibetan thangka images, open to the nature of the heart-rainbow of Tara, feel how her radiant blessing can move through space and time. I'm also working with the new concept of "dedicating the merit my practice" to Nancy. There is much here that is new, and I feel awkward and compassionate with myself at the same time. It is what it is.  I trust that my learning her is unfolding just as it should.

Mourning is easier with these images and the structure of a daily practice. My feelings and sadness seem to move through me gently and continuously, rather than the throat-lump that has been grabbing me for weeks.

I had a couple of hours of altar construction this morning, which is how I found the sari (it was stored inside the wooden box that was the base of her prior altar :)  I now have a larger altar space set up in the great room in our house, with photos, offerings and most of the objects that visitors brought and contributed to her altar in the hospital. Our wedding rings are there, too.

Another ritual has been assembling all the photos I have of Nancy, and building an album of the best.  If we are linked on Facebook, you can see it at https://www.facebook.com/media/set/?set=a.10150435564201752.351557.713761751&type=1&l=98a2cb7541 I've loved doing this, as the pictures remind me of many happy times we have had, adventures we shared.

It's quiet in our home tonight, as I work on a crab bisque for dinner, feel all kinds of feelings, and admire the slender slice of moon out the window at sunset.

Love,
-tdc

Healing through dreams (day 4)

Warm regards, everyone, this chilly Christmas morning.

I've received so many kind wishes, photos and different forms of support over the last few days that I can barely keep count. Please accept my deep thanks, if I haven't contacted you individually.

I'd like to share with you some of the dreamwork that surrounds this experience, for me and for us as a collective. I beckon my dreams and honor them as divine communication, and am finding some fantastic healing images are coming through.

The night before Nancy passed away, I had this dream:

I'm in a hospital, and I've been there as a patient for a very long time. I'm very weak. Some friends come to visit, and they tell me I can get out; they bring light-colored clothes, help me dress, and start me on a journey out of my room. I follow their instruction, go down the corridor, down an elevator to the ground floor, heading towards the outside. I encounter a few medical staff, who ignore me, and a patient in a hospital gown, who looks at me in pain, as though she is stuck inside her disease process, and recognizes that I am not.

On the ground floor, it gets lighter and lighter as I get closer to the outside, and natural daylight starts to filter in. I go through several unmarked doors to head in the right direction, until I finally open a door to full bright daylight. It's a parking and delivery area behind the hospital, but the light is so bright I can barely open my eyes.

The last words I said to Nancy before she passed were, "I love you, I release you. Now turn towards the light."

Early this morning, another dream came through.

I'm in UCSF hospital, walking through the ICU to visit Nancy. When I get to her darkened room, and slide open the door and the curtain, I do not see her or any of the medical equipment or bed. Instead, I see a row of candles, small lamps and colored lights beginning in the middle of the room and vanishing into the distance and the darkness, like an infinitely-long strand of the best Christmas tree lights you can imagine. All the lights are different, and they are close together, so the lights merge and become a straight line of never-ending color.

I find a lot of comfort in this image. It's so fresh that I can't say anything else yet.

The morning that she passed away, ten minutes after her heart stopped, one of our friends had the following dream, which they have graciously allowed me to share with you.

Nancy Jones and I are in a small rustic wooden structure, something like a cabin on a large lake somewhere. There is a small number of other people there (maybe 10 tops) but no one from outer life. The mood is happy and comfortable but not raucous, joyous or overly celebratory. It feels like a group of friends getting together for no particular reason. Nancy is dressed as she often was when we were in the MS together – white t-shirt and black tights.

A time comes when Nancy wants to leave but, for some reason, she does not want to use the door. Instead, she wants to go through an opening that looks like a small window with no glass in it. It's about maybe 12-15 inches square and is about the height of a decorative window that you might find in a door, maybe 3-4 feet off the ground, but it is in the front wall. I quite frankly don't think she will fit through it and tell her she should use the door but she insists and does get through the window. I also get outside but don't really know how I got there.

Outside there is a small boat, like a rowboat but with a small gas outboard motor. Nancy doesn't know how to handle this boat so I have to teach her how to steer and how to use the twist throttle. We go together in the boat as I teach her how to do this. Although she has never piloted a boat before she picks it up very quickly. We motor over to something that looks like a small breakwater made of concrete that curves over to the shore. I get out of the boat on top of the breakwater and Nancy takes the boat and heads out into the lake.

This person didn't know that Nancy and I were married at the family cabin on a lake in Canada five years ago, and that we intend to scatter her ashes there this summer. It has always been her favorite place in the universe.

Love,

-tdc

Continuing our prayer ritual (day 1)

Hello, my friends and family.

Today has been raw and quiet, as I've wandered our empty home and done small things. I've cooked, cleaned, cried, contemplated, refilled votives, done laundry. I emptied Nancy's enormous prescription tray. Somehow I can look at all the reminders of her life, like her dozens of pairs of shoes, and feel happy, sad, present. But the reminders of her illness are much harder, like a dirty kitchen counter, I want to scrub them away.

I've been reaching into my own buddhist practices, looking for bridging between Nancy and the divine, and just received exactly the email I was longing for. From a friend and zen priest, Reverend Valerie Szymanski:

Here is Tara's Meditation for the Dead (a 49 day prayer) that you chant daily. I will be doing the same.  At the end of 49 days I will close the period with a Memorial Service for Nancy.

From Tara's heart rainbow, light shines forth throughout the six realms and the bardo,
enveloping the deceased one, Nancy Jones, wherever she is,
purifying her karma, and infusing her with Tara's radiant blessing.

Her form becomes brilliant spheres of light and dissolve into Tara's heart-mind,
a realm beyond the cycles of suffering, a realm of absolute purity and bliss.

Meditate in this way during the 49 days after death, dedicating the merit of your practice to the deceased.

Tonight I begin 49 days of mourning and practice, with this prayer at 7pm PST. Please join me as you feel moved to. I am not intending to continue sending updates each day, but it feels like I have more to share. Speaking of sharing, if you have photos of Nancy, I would greatly appreciate copies. I would like to build an on-line photo album for all of us.

Love,
-tdc

She's gone (day 57)

Nancy Adelle Jones passed away peacefully this morning at about 4:30am PST. Tina Benson, Jim and Kathy Jones and I were there all night with her, loving her and holding her in a quiet darkened room.

I don't have any capacity to say more right now. I imagine I will write again soon.

Love,
-tdc

The limits of endurance (day 56)

Good evening.

Even before I got here today, Nancy was deep in conversation with our friend Tina Benson, who married us just over five years ago. Nancy has had enough. Enough treatment, enough hanging on in the face of a hopeless situation, enough discomfort and indignity and medicine and treatment and handling. Babbas Andreadis got here around 5:30, and talked with her and separately with Tina and I. Nancy's choice is clear, to all of us. Those of you who know Nancy well also know how decisive she is.

So we have changed her treatment completely. She's been breathing on her own with pressure support for more than a day, so the change was pretty easy and gentle. She is now medicated to handle all pain and anxiety, and is back on a trache collar, breathing air for herself. She's not getting any more antibiotics. She is dozing, able to hear us,and looks completely relaxed and comfortable as Tina and I sit vigil with her tonight. I've called her family, and I expect they will be visiting soon.

Please pray for her peace, send her your love, remember all that she is, and cherish her. We expect her to slip away sometime soon, perhaps tonight, perhaps tomorrow.or the next day.

I had a white light dream last night, and now I know why. I've told her again how I love her very much, that I chose her. I pray to be fully present for this, and for her to find the love she has always doubted, to join the light I dreamt of. We hold her in our hearts, and wait.

Love,
-tdc

Change in the air (day 55)

It's another fairly quiet night in the hospital. Jim and his wife Kathy are visiting, Nancy is napping, and I'm waiting for her night companion to arrive. Nancy is generally doing well, although she has required some norepinephrine to support her blood pressure, and is still running a mild fever.

The hospital contacted me today, and they are starting to talk about moving her in the future to an LTAC, long-term acute care facility.  The only one that can handle her needs anywhere near us is in Kentfield (other alternatives are San Leandro and Reno!)  Her attending oncologist is against any move at this point, and so am I.  As it turns out, as long as she's on a med to support her blood pressure, she's unlikely to move.  This is not an imminent decision, but I imagine that our insurance company doesn't want to pay for ICU care forever.  This is just the beginning of the outer dance that I'm sure is going to go on as long as Nancy is with us.  I'm sure her care has gone solidly into the seven-figure range at this point.

Babbas Andreadis, her main oncologist all year and a man I sincerely appreciate, wants to meet with us to go over the current state of affairs.  I know Nancy has at least two infections, and the ongoing fever, increasing need for pain medication, and blood pressure support are all concerns.  We are going to try to do that tomorrow at 5pm, and whatever comes out of that meeting may have an impact on our situation too.

The electrolarynx device, which should allow Nancy to communicate better, should arrive at work tomorrow.  I'm hoping to bring that to our meeting, and enable her to talk some about her preferences, her feelings, whatever she wants.  It's been weeks since she could talk at all, except for lip reading, and she has some big things she wants to say.

Love,
-tdc

Restoration (day 54)

I'm sitting with Nancy's brother and sister, Jim and Janet, tonight in her room. Today feels much better than yesterday, on all levels. She is doing better, I'm rested, and I have a solution that should allow her to talk.

The friends who have been sitting with Nancy at night all have feedback and suggestions for making it easier for her to sleep, ways to make her more comfortable. And the medical team has been really good at taking the feedback and turning it into standing orders that should make life easier. For example, instead of moving her every two to four hours (standard protocol to avoid bed sores and pneumonia) they are going to give her a good dose of pain meds at 9pm, reposition her a half-hour later when the pain meds are in effect, then let her sleep until she wakes. She's slept a lot today, and apparently rested pretty well last night too.

And it's a good thing, as her fever is back. She's currently running close to 102°. She's not agitated or trying to talk much, with a fever like that. Her nurse just brought ice packs, and gave her some tylenol, so it should come down some. We don't know if this is the abscess, a new infection, or some neurological effect. I remember a few months ago, when a temperature like this would really have me freaked out. Now, with all we've gone through, I'm just taking it in stride, and trust the medical team to handle it. There is a lot of competence in this ICU, and I never worry about the level of care she gets.

I feel rested after 10 hours of sleep last night, and I'm functioning a lot better too. I was able to get a bunch of bills and things handled this morning, stuff I just couldn't cope with last week. Today was also a good productive day at work.

Our community here is turning out to be amazingly resourceful...one friend with training as a speech pathologist suggested that we should look into electrolarynx technology. This is a hand-held sound device that you press against your throat, allowing someone who can move their lips and tongue to talk. I called the UCSF adult speech therapy department today, and they are arranging a consultation. But in the mean time, I've found some models on line, and am ordering one tonight with overnight shipping. With a little luck, Nancy will be able to talk on Wednesday. She will sound pretty robotic -- the sound these things make is not very human -- but I expect that the ability will be welcome. It's going to take some training and practice to make it work, but I'm sure several of us who are often with her will be happy to figure it out.

There are a number of new folks on this list, so I'm putting my older emails out into a blog, where you can read some of what has been happening up until now. Right now I only go back to late November, but in the next couple of days I will try to get the entire year out. You can see the blog at http://nancyjonesupdate.blogspot.com/

Janet is spending the night with Nancy tonight, and I think we have a full calendar of folks sitting with her over the next two days. More have joined the caregiver list today; I think we're up to nearly 30. I really appreciate this support. It's time to head home for dinner.

Love,
-tdc

Against the wall (day 53)

Greetings from our home, the first time I've been here in the afternoon in more than seven weeks.

Today seems to be "wall day" to me. Nancy is up against hers, and I'm hitting mine. My situation is pretty straightforward, I'm just exhausted, again. Janet (her sister) and Cindy (high school friend) arrived this afternoon, and they graciously offered to stay until Leigh arrives to spend the night. I'll need to hold our prayer circle tonight from a distance, perhaps just as another participant.

Nancy is struggling a lot right now, both yesterday afternoon and today, from when I arrived mid-morning until I left mid-afternoon. She wants to talk, but will not or can not make simple clear requests that I might understand by reading her lips. Rather, she will close her eyes, apparently deep in thought, then open them and speak a sentence, or a paragraph, that I cannot decipher. Over and over, for hours, we've been doing this dance. Some bits I can pick up; she's in pain, she doesn't want to die, get her out of here, where is Janet, when will Jim be here. When I ask her to slow down, go one word at a time so I can repeat and understand, she just won't do it. I did get a clear response once, "Shut the fuck up".

In the face of this, I’m stretching beyond what I know, to find compassion, receptivity, even look for gratitude for what life brings me. I haven’t lost my temper -- yet -- or even lost my sense of calm equilibrium, as I can see how immensely frustrating this is for her.

But even more I see her spirit in motion. Those of you who know her well, know that she is a force of nature, certain in her sense of what is right, stubborn, and slow to change. She wants to live, and that is where she is, who she is, her reality. Our buddhist chaplain resource, Denah Joseph, was kind enough to make her way to the hospital at 11am to visit, and facilitate an hour with her today. Mostly she brings Nancy back to her body, to her feeling, and it helps. And she also observes that what we do in our lives, who we essentially are, plays out as we move thought the end of our lives as well. Nancy may be up against her wall and her attachment to living, all the way to the end, whenever that may be.

I want to celebrate that, not make it wrong. Here are two photos I just got from a friend in her mystery school studies, in 1999, showing her working on a mandala, and the mandala itself. You can see all of who she is through these photos, her juice, her precision, her symbolic connection. The center of the mandala is an Iron Cross.

My internal mantra over the last couple of weeks is from Dogen, a 13th-century buddhist teacher.

I am attentively sustained by the profound presence of all buddhas.

I don’t know why this is my favorite quote in the universe. I just know that it serves for me to chant this inside right now. And yes, my friend the lump is here, right in my throat. Denah also observed that it’s hard to get a lump in your throat when you have a tracheostomy, like Nancy. Perhaps some of what makes it so difficult is the harsh reality of being penetrated at the fifth chakra, the unceasing force of a respirator pushing air into her body. I cannot imagine.

Love,
-tdc

On love and sadness (day 52)

Good evening from Nancy's bedside, where three of us just finished our prayer circle. Tonight I played another Anugama piece, followed by "Chen Rezig" from Gabrielle Roth's Refuge album.

I did bring a hand-made throw for her bed today, some cute socks with a chili pepper pattern, and some silk cloth to dress her. She was happy with the socks and throw, not ready for silk. And tonight her sister Janet brought lavender spray and aromatherapy oil. So the temple has some sensory delights tonight.

It's been a quiet "couples" day, as there have been no single visitors. Two friends from our couples' workshop last year came this morning for several hours, and Nancy's boss/partner from Millican-Jones and her husband are here tonight to stay all night. Nancy and I had the whole afternoon to ourselves, and my experience ranged from stillness through waves of feeling. We didn't talk much, but we did spend some time connecting, even crying together a bit. I have to say, it's really hard to hold a person who cannot move, and is in a hospital bed.

This afternoon had a tinge of sadness to it, as we just sat and looked at each other. She isn't saying much, but she was awake all day, thoughtful, sometimes with a furrowed brow, sometimes with a sad look. On my side, I am painfully aware of having to let her go, when she is ready, while still holding space for a miracle. The timing is all a big mystery, and I really don't know where she is in her process. So I can only be present, and feel what I feel.

I've had several conversations over the last two days about how powerful this whole journey is for all of us, as a collective group. There are now 160 people on this list. Several have told me how they wait each night for my update, and I feel compelled to write one each night. I get compliments on my writing, which I appreciate of course. But there is something deeper, and I wonder what it is that compels us all.

For me, well, I'm facing the loss of my beloved, the woman I chose. For all of you, she's your friend, your sister, your co-worker, your coach. There is something about Nancy that is spirited, beautiful, engaging. An awful lot of us love her, in all our different ways. The irony is that it's always been hard for her to receive, we've talked many times about how she wrestles with feeling loved.

She is perhaps the most loved, unlovable woman I've ever known. Maybe that resonates us beyond our personal feelings of loss and tragedy and love.

Love,
-tdc

More rest and introspection (day 51)

Hello, friends.

Today started a little dramatically, as Nancy's blood pressure was dropping early this morning. Her abscess can "seed" bacteria elsewhere in her body, where her immune system does it's job...and triggers a fever or a change in her heart rate at the same time. By 8:30am, she seemed back to her normal state, and medically, the day has been pretty quiet ever since.

One of her friends brought the lip reader team back this morning, and we had a couple of visits with them, and with our chaplain. We continue to give her opportunities to ask questions, talk about anything she wishes, but as present and alert as she is, so far she hasn't asked for much or talked about much. Nancy will be talkative for a few minutes at a time, then need to rest for a while. So we haven't had a chance to enter an involved or deep conversation yet. I can see how delicate her state is, so I have to practice being very spacious, not asking too many questions, pulling my energy way back so I'm not intrusive. She has asked for some clothes, and I'm bringing some things we can put on her body tomorrow. We have a really beautiful sari, for example, and if I can find it, it will be on her tomorrow. I'm also going to look for some scents and textures, like rose or lavender oil, perhaps silk materials.

I had a few productive hours at work this afternoon, and we've continued to have a lot of quiet, restful time together in her room. Several friends were here for prayers tonight, all women, seems very appropriate. I played an Anugama track called Meditation Ocean tonight for our ritual time.

Hard to believe it's Friday. I'm as adrift in time as she is.

Love,
-tdc

A slight divergence (day 50)

Hello, everyone.

I'm sitting with Nancy tonight, along with Jim and Kathy (her brother and sister-in-law), right after our 7pm prayer time. That little bit of structure has really pulled us together...I cannot imagine spending time praying with them under other circumstances :-) Nancy's sister was here earlier, and will be back after dinner. Several friends came and sat with her today, another is coming for the night. We seem to be nicely filling the schedule up with folks to sit with Nancy.

Today was my first day back at work since December 5th, so I know less about Nancy's day than usual. All I can say is that she was apparently quite alert and engaged this morning, napped more this afternoon, and seems quiet and thoughtful and present to me since I got here a few hours ago. Tomorrow a friend and our buddhist chaplain are coming with lip reading teams, and I'm hoping she will again have an alert morning, so she can converse, and express and request whatever she needs.

My side of the day was a little surreal. I'm happy to be doing something technical and professional and impersonal on the computer, a welcome change from the intense emotional roller coaster of the last week. But I'm also tracking how it's separating me a bit from Nancy and her process and experience. This is neither good nor bad, just an observation. It did take a few minutes of conscious effort for me to soften and get present when I got to the hospital.

The other surreal part is that my co-workers are generally aware of what has been happening, and a half-dozen of them are getting these updates. The ones who know are being very spacious and supportive, and the ones who don't ask me, of course, how my wife is doing. How in the world can I answer? In some cases, I'll tell them she isn't doing well, show a little tiny bit of the huge well of emotion inside, and they find their warmth and capacity to be with my pain. In other cases, I'll just evade the question. One kind-hearted woman simply told me that she'd heard that my wife was ill, and hoped that she gets better soon. I nodded and smiled, and managed to contain the lump that cheerfully reappears in my throat every chance it gets.

Speaking of the lump, my constant companion, a simple walk today was very emotional. It was crisp, autumn weather, breezy, with red maple leaves falling. After all my time in the hospital, I feel like I've been on retreat, and the beauty of the day was delightful. Then I remembered that Nancy will probably never experience this again, and the lump is there. I nearly started sobbing out on the streets of San Bruno, just walking to the market to get a sandwich.

So there's divergence between Nancy and I, and between the reality I walk through and the one I experience inside. What is real? I've never been so painfully aware of how subjective our experience is, how reality is a state of mind. And I truly wonder what it's like in there, where Nancy is living. Perhaps with the conversations tomorrow, we will know more.

Love,
-tdc

Resting into a new place (day 49)

Good evening, from a quiet room where Nancy is comfortably sleeping.

The palliative care team here at the hospital is continuing to support us in lovely ways. I didn't realize that they were connected to the Zen Hospice Project, which I've known of and respected for many years, and that our chaplain teaches at Spirit Rock (a wonderful large buddhist facility right over the hill from where we live). The intention/structure I've been holding all year, for Nancy's recovery, just does not serve any more. As I let go of my intention, the relief I feel inside is hard to describe. My attachment to her recovery has been a good thing, has served her and us very well, and has been a big weight on my shoulders. Now I have more capacity to start to deal with our outer lives, her final journey, and my own transformation and sorrow.

Today we met with the chaplain, some of the team members, and the lip reading pair for an hour. Nancy has been tired and napping all day, common after dialysis, so she was not very talkative. But the intention of palliative care is clear, and one of the first things we hope is to create an opportunity for Nancy to talk about anything she wishes, request what she needs. The chaplain is arranging another meeting on Friday or Monday to continue the conversation.

In the mean time, I'm setting up a shared calendar for the people who are coming to sit with Nancy around the clock. As I mentioned yesterday, this really helps Nancy feel safe. Tonight I started sending out the invitations to folks that have volunteered. You can still send me a note if you want to be a part of her core support group. I am asking members to take a 4 hour visit, or an overnight shift staying with her, at least occasionally, as we go forward. I'm continuing to be here from 6 to 9pm each evening, and most of the days on the weekends. Liza Leeds and Lily Kaplan are helping me hold this, and I want to publicly thank them for their kind assistance.

Nancy is continuing to do fine, although upon waking, she sometimes doesn't know where she is, why she can't move or talk, and gets very frightened. Otherwise, she is aware of her situation, shares some of her feelings, and is napping a lot during the day. Tonight we played Krishna Das during the prayer circle, the Heart Full of Soul album. She's always loved kirtan, and especially Krishna Das, whom we've seen live on two occasions.

As I sit here, it strikes me that I'm watching all the same monitors (pulse 93 BP 90/60 SpO2 100 respiration 10 temp 38.0). But the numbers don't mean the same thing. Before they were the critical indicators as she descended into a septic hell, underwent surgeries, survived infections. Now they are mere data. The journey is different now, and the data doesn't matter, except to tell us when the journey has ended. So I hardly pay attention to the monitors any more. Who Nancy is, and what she needs, are far more important. That's the gift of palliative care.

Love,
-tdc

The hardest conversation, part II (day 48)

Today represents a shift, something of a change in direction in Nancy's journey. I can feel it in my bones, even though she has not made any decisions. The texture of our existence is a bit different.

Our meeting this morning helped me understand a few things, and I feel as though part of my load has been lifted. Her doctors made it clear that Nancy doesn't have to choose A or B, like I thought (it's funny how my fears creep in). Outcomes are unknown, it's much easier to just be present. Really, the choice she has is to simply stop any additional medication or procedures. It's easiest to say 'no' to something new, rather than take away some form of support she already has. That decision can come at any time, there is no rush. The respirator support that she has been receiving is not available in the palliative care suites, so we are not going to be moving. Palliative care docs and nurses and a truly lovely buddhist advisor are going to come to her room to help.

The palliative care team all seem to be impressive, compassionate people with a lot of capacity. Part of why I feel lighter is that I can rest into their support along with Nancy. We have another meeting tomorrow morning with them (and the lip readers), to discuss who Nancy is, how we can all support her, and what her desires are. I can feel how we are on a much better track now, rather than trying to make medical decisions with our own resources.

Today Nancy has needed more breathing assistance, and seems to have less sensation in her arms and legs. Her neck is very tender, she's still running a mild fever, and doing well in all other aspects. Even though her kidneys are working great, she needs dialysis every three or four days, and that happened this morning before and during the meeting. We had scheduled a follow-up MRI a few days ago to track the state of her abscess, but on Sunday, Nancy refused to go, and on Monday, her ICU attending doc told us that he wouldn't have ordered it, and it doesn't really help in any way, so Nancy had them drop it. The damage to her spine and nerves is irreversible, barring miracles. Nancy is a quadriplegic, and she will be motionless, with respirator support, for the rest of her days. And...she is completely lucid, making good decisions, feeling sad, frightened, and occasionally smiling.

She decided that she wanted orange juice this morning, so I went and got some, and we gave it in small quantities using a mouth-cleaning sponge on the end of a stick. That got a smile and a wrinkled expression. A small, endearing thing...that's the strongest taste by far that she's experienced in many weeks.

Her niece Kristen stayed with her last night and all morning. I am talking to folks about how to set up a system for people to come and stay with Nancy 24x7, as she really wants company in her room. We don't have the details worked out yet, but the palliative care folks seem helpful and full of practical ideas.

I'll be looking for volunteers to come sit with her for a minimum of four hours at a time, plus someone to stay here each night from 8 or 9pm to about 6am. If you are interested in helping with this, please send me a separate email, as I will create a separate list and calendar (and get help!) to organize it. I'm still planning to be here each day, in the evening, to be with her and to support the 7pm prayer circle. And I'm going to ease my way back into work, as I cannot keep dong 12-hour days in the ICU.

Please continue to pray for Nancy to find peace and clarity and wisdom.

Love,
-tdc

The hardest conversation (day 47)

Hello, friends.

We've been having the deeper conversation today, Nancy, I, and a couple of our friends who are trained therapists and caregivers. Out of respect for Nancy, I'm not going to be too specific, as this is an intensely personal question. What do we do, and what choices do we make, when we know our days are numbered?

To be sure, all of our days are numbered. I have perhaps 5000 or 10,000 or 50 left in my life, who knows. Nancy knows she hasn't all that many. Does she want to be kept alive at all costs as a quadriplegic on a respirator, for example, for maybe a month or two? It's easier to say what we would choose when we are not facing the end of our life, the cycle of incarnation, the face of god. She now has to make choices soon that will impact the rest of her life.

We're exploring options, which depend on choices by the staff, and choices by Nancy. Tomorrow morning we are having another meeting with her ICU attending doctor, and a lip reader.

During our prayer tonight at 7pm, I ask you all to pray for Nancy to find peace and clarity and wisdom.

Love,
-tdc

Winding down a bit (day 46)

Stepping back, I realize that life has been very full for us over the last five days, as Nancy's family and our friends mobilized and relatives flew in from Connecticut. There have been up to a dozen visitors a day, and today things are winding down as her niece and cousin are returning to the east coast. I've had her all to myself for the last two hours, and she's been napping a lot.

She is continuing to do very well with minimal pressure support from the respirator, so she is initiating her own breaths. If this continues, we can start talking about getting her off the respirator and even using the speaking valve again within a few days. That's what I'm praying for.

One of our friends sent us a small book and CD set entitled "Graceful Passages", and I read it today. What a wonderful resource. Since she doesn't want to listen to anything, we haven't played the CD yet, but I hope to get to it tomorrow. I'll be here all day again.

The prayer ritual has also been happening for five days, that has anchored the day in some really good ways. We will be entering ritual space in her room again shortly, at 7pm. Tonight it's Sounds of a Tibetan Monastery, as she doesn't want any music. Our friend Sherrie is coming to spend the night, and I have other volunteers lined up for the next few nights. That's a load off my mind. Nancy really rests better when there is someone with her. Come to think of it, I do too.

See you shortly on the inner planes.

Love,
-tdc

A little progress (day 45)

Hi, everyone.

The good news today is that Nancy got back to pressure-supported breathing this morning, and has been doing it all day with no problems. So perhaps we can work back to using a Passy Muir Valve to speak after all :) She's been more alert, communicating as best as she can, and we're all happy to see it.

All visitors today were family, including Nancy's father, who is 89 years old and bound to a wheelchair. It's been something like four weeks since he last made the trip here from Novato, as it takes several people to move him up and down the exterior stairs in their house. Her sister, brother, niece and cousin have been here all afternoon, and her other niece is dropping by late tonight on her way home from college for the weekend.

We had another meeting with one of her doctors, discussing options and future decisions. He suggested that another MRI will let us see what is happening with the abscess, so that's what we're going to do.

Anugama, Sweetness of the Earth, was the sound track for tonight's prayer circle, which was simple and quiet. One of my oldest, er, longest friends is coming over to spend the night with her tonight. And I'm going to be asleep five minutes after I get home.

Love,
-tdc

Somnolence (day 44)

Hello, from the hospital.

Today has been very quiet, as Nancy has been sleeping or dozing nearly the whole day. We've had only a few visitors, plus her sister, brother, niece and cousin, so it hasn't been as tiring as yesterday was. Our friend and neighbor Karen is coming to stay with her tonight, which really helps her sleep. Last night she slept solidly with Sharon keeping watch. It seems important to me that someone is with her all the time now.

The plan was to work Nancy back to using a speaking valve on her trache, but we actually took a step backward today. Yesterday, she was initiating breathing on her own, what they call pressure assisted breathing. Then she went back on full respiratory assist for the night. This morning, the team tried to switch her back to pressure assist, but it was no go. Nancy was not initiating breaths on her own. We will try again tomorrow morning, but it's not a good sign. It's very possible that the nerves that activate her diaphragm have been impacted by the abscess. So we try again tomorrow, and figure out the next step based on her breathing ability.

One of her friends from our mystery school studies came to visit today, and stayed for the 7pm prayer circle. It was lovely to have her participate. She also taught me some acupressure points to work with on Nancy to help with her breathing and general well-being. During the ritual itself, there were several times when Nancy opened her eyes and smiled at us. The music was Anugama, "Healing Earth", and Deuter, "Islands In The Sun".

All medical stuff is doing fine, no new medications, all vitals are perfect. Nancy is motionless and sleeping, with the machines quietly doing their part. I still have a lump in my throat.

Love,
-tdc

A family reunion (day 43)

Tonight is a lightweight report, as I'm needing to get to sleep. I just got home. Another friend is spending the night with her, for which I am very grateful.

Our "big" healing ritual tonight had a lot of people participating, based on the emails I saw. A whole Pathways workshop, a group of buddhist monks, a choir just before practice...and hundreds of friends and family. I wish I could tell you that Nancy was glowing in the dark room or levitating or some such remarkable effect, but in truth...she got itchy about 20 minutes into it. This is not normal, I've never heard her ask to be scratched all over her body, so I take it as a sign that (1) something happened, and (2) it impacted her nervous system, which is in fact where the abscess is. Time will tell. I have complete faith that this is in service to her, and felt a lot of energy moving myself. We will continue doing this each evening at 7pm.

We had visits by about eight family members today, plus a couple of friends and co-workers. So it was a very busy day. This evening, there were six of us in her room, a gross violation of the visiting rules. Nancy's niece and cousin flew out today from Connecticut, so it was a reunion of sorts. She did seem happy to be surrounded by so much family tonight, smiled a good bit, and even asked us to make her laugh.

She spent the day with minimal breathing assist, and was completely comfortable, so tomorrow they will try taking her off of respiratory assist, another step back towards speaking with a Passy-Muir Valve. In all other ways, she is the same, good vital signs, pain managed with narcotics, napping a lot and sleeping reasonably well, cranking out liters of urine. And she is starting to ask more questions, wanting to see her doctor, and try to talk more in general. All good, no matter how you look at it.

Love,
-tdc

Ritual Space (day 42)

Hello, everyone.

What a full day for all of us. The outer world, in the form of my computer, got really busy, and the inner world, in the form of Nancy's room in the ICU, and perhaps Nancy herself, is getting more quiet and grounded.

On the outside, we've had an incredible flurry of email, phone calls, text messages...an outpouring of support and shock and prayer and energy that is really amazing. At 7pm tonight we had our first prayer circle, and Nancy's brother Jim happened to get to her room just before hand. So we broke even more rules, and both stayed in the room during the nursing shift change. The lights were down, the Mahamrityunjaya Mantra (a Hindu prayer for healing) played softly, and the three of us opened and connected as many of you joined us and set your prayers in motion. About half-way through, Nancy had a little breathing distress, we got some help, then held our connection and intention to the end. Jim wrapped it up with a prayer to Jesus. Just lovely. Tomorrow night is the big one, with at least a couple of hundred people participating. I feel grateful for and honored by your collective generosity.

On the inside, I'm watching Nancy go somewhere profound. We're not talking, as she isn't saying much. It's as though she is resting into herself, not needed a lot from me or anyone else, except for us to help keep her comfortable. There was a steady stream of visitors today, and for the most part, Nancy didn't try to talk, often just dozed. I'm trying to just be in service, holding my own need to connect with my wife or express what I'm feeling, and doing my best to create sacred space for her. One dear friend brought a thangka of Chen Rezig this morning, a welcome and beautiful addition to the room. There are more altar objects and a lovely hand-drawn card. I've put together a collection of healing mantras and meditation music that is playing in her room tonight, while another friend stays and keeps her company. Even as I get to live in our temple at home, lighting candles as usual, Nancy is held by her own ritual space and all of our prayers.

Medically, she is much the same. She's running a mild fever, breathing with minimal assistance for most of the day, more assistance at night. Vital signs are fine. Her pain medication is effective, and she's alert and responsive when she wants to be, and inside of herself with her eyes closed otherwise. Her ICU doctor this week is a woman of considerable capacity and compassion, and I feel like the resource I need are showing up, the places I need to go are being signposted. Thank you, all of you who have offered wisdom today. And thank you for dinner, which showed up like a late night miracle :-)

Love,
-tdc

Our worst fears (day 41)

Good evening, after a long day.

I wish I had a good way to say this. Her team of doctors tells us that Nancy will not recover from this illness. As I mentioned a couple of days ago, the abscess is so large that it is inoperable, and we're already doing everything possible medically. The doctors made it clear that even a perfectly healthy person with an epidural infection like this would not be able to beat it. They also confirmed that, without the significant pain medications she is now getting every two hours, she would be in agonizing discomfort.

Nancy took in the explanations during the meeting without question or comment, I asked a few questions to understand all the possible future paths for her, and she has been quietly processing all of this ever since early this afternoon. We had a lip reading expert here about an hour after the meeting. All Nancy wanted to say to Janet, Jim and I was, "I love you all so very much". We've all been in quiet thought, tears, and somber discussion ever since.

We've had several gracious visitors, but now I'm the only one here with her. Janet stayed last night, so she is exhausted, and Jim is working tomorrow. I got little sleep last night, and feel deeply sad, emotionally exhausted, and tender to both her and myself. I've had a big lump in my throat all day. Occasionally, my thoughts wander to the future, for her and for me, and I keep bringing myself back to the present. I can't handle too much more right now.

So now we get to pray for a miracle, and prepare for the most difficult initiation, one we all must face one day. Nancy (and I) have some difficult decisions to make over the next few days. Do we keep her on assisted breathing? What do we do if her heart stops, or if she gets pneumonia? She knows we will have to discuss this soon, but is not ready.

In the mean time, Nancy seems to have some acceptance of the situation. She told us last Friday that she was getting worse, that she was going to die. I think she has known far more about her situation than the rest of us. Not surprising.

She is comfortable, not wanting to talk or hear music, resting a lot and sleeping in short bursts. She is also still running a 101° fever, with an elevated pulse rate, just as you would expect with a big infection. It is silent in the temple tonight, with only the quiet rhythm of the assisted breathing machine and whirr of the fan in her air bed. And the soft click of keys on my laptop.

Love,
-tdc

Building community (day 40)

Good evening, from our home in Fairfax.

Today has felt resolute and quiet to me, and that's what I see in Nancy as well. On one level, we are all preparing for a meeting tomorrow afternoon with representatives from all the specialized medical teams. Jim and Janet and Nancy and I, with her oncologist, a neurosurgeon, the ICCU attending, a nurse practitioner, an amazing social worker, and probably a handful of others. On another level, it seems like we are all turning towards each other, to deal with all of this.

Medically, today was pretty uneventful, with no changes. Nancy was breathing on her own through the whole day, and started feeling very anxious and a bit short of breath around 8, when she switched back to assisted breathing. She immediately started relaxing, and was dozing within a quarter hour. I was at the hospital at her request this morning at 8, and back after work at 6pm. Much of what I do there is tend to small comforts for her, rub her shoulders, comb her hair, etc. Sometimes I read your notes to her.

It's been a day of community on many levels. Today I got about 50 emails, which I'm still absorbing. Nancy got a half-dozen visitors, which she thoroughly enjoyed. Janet is staying with her in her room tonight, to help ease her anxiety when she's alone. Jim and Kathy were there this evening, and Jim and I went out to hunt down an appliance light bulb at 9pm. Two guys on an unlikely quest in a Mini Cooper. Saturday, Jim had brought a family Christmas decoration -- a small ceramic tree with colored lights -- to adorn her room, and it was a cheerful presence until the bulb burned out. Now it's back in action. Whatever Nancy Wants, Nancy Gets :-)

My gut sense is that tomorrow's meeting is going to shift things in some way, but I don't know how. Today, we all agree, we are all holding the intention that she will overcome this infection.

Love,
-tdc

The Mozart Wait (day 39)

Hi, everyone.

We are now facing the biggest mountain of all. Her two-month infection has turned into an abscess that seems to span most of her cervical and thoracic vertebrae, half of her back. It's inoperable, it's too big. Medical treatment is limited. The team of doctors switched antibiotics Friday, to meropenem and vancomycin, the big guns. The immunosuppressive drugs that prevent graft/host disease are dialed down to minimums, tachrolimus is below the therapeutic level, and prednisone is down to 10mg today. They will reduce the prednisone again in a day or two, but 5mg is pretty much the minimum to avoid an adrenal system crash that would also cripple her immune system. It's a tightrope. Her immune system must rally to beat this.

The odds of Nancy beating this are not good. Nancy doesn't want to die, she's scared, I'm scared, and we're digging deep. Her brother, sister and I all had extensive talks with her ICU attending and oncology attending today, and we're putting together a meeting in a couple of days with the whole team.

That being said, some other parts of the journey are going well, and I believe in the power of all of our intention and prayer. There are a lot of us petitioning for her recovery, I'm giving her reiki each day, and lighting our altars each night. Her kidneys are working well, putting out something over four liters of urine each day. I didn't even know they could do that. She's been breathing on her own all day today, although she'll get some breathing assistance tonight to help her rest. Her lungs have cleared of fluid, and she hasn't been coughing up anything at all today. Her secondary inflection has cleared, and she has no more indication of any stomach problems. All her vital signs look good, though her pulse has been consistently high, around 100-105. She has almost no fever. She's resting comfortably, and sleeping more than half the time since 3am this morning.

She's sleeping now, in a quiet darkened room, as the chaos of the daily nursing shift change swirls outside. Mozart has been on the iPod player all day, as Janet, Jim and I take turns being with her. Her nephew Andrew and sister-in-law Kathy were here this morning also. As a side note, her dad came home from his week in the Novato hospital today, which helps ease the collective stress in the Jones clan.

Settle in, this is going to take days or weeks to resolve. I've learned that love is not a transient sensation of the body, love is a state of being, as durable as a galaxy.

Love,
-tdc

Two steps back (day 38)

Good evening, my dear friends.

News today is not good, in fact, it's scary. The MRI scan last night showed that Nancy's spinal abscesses have never cleared, and in fact have expanded. Even though she's been on all the right antibiotics all through this, and fought off two secondary infections, the main problem that put her into the ICU is still there. And it's getting worse.

The neurological team says that she is weaker than she was a week ago, which is why they did the MRI last night. They added a CAT scan of her head this afternoon, but I haven't heard back on the radiologist report yet.

She is aware that she can't move as much. We're both worried and scared. We're meeting with several of the doctors in the morning.

Love,
-tdc

Back to the ICU (day 37)

Well. Things are better since this morning. So I guess this is a day of progress, after a day where we lost a little ground. As my friend George said today, two steps forward, one step back.

Nancy has a UTI, a urinary tract infection, which is another common side effect of being in bed for weeks without potty access. Again, she has 'gram negative rods', again, they're doing a new antibiotic, again, she's responding nicely. She has a mild fever right now, and has been dozing a lot all day, but she's also responsive, with the usual request for a head massage. So the theory is that this infection, along with her exercise a couple of days ago, just pushed her a little over the edge. She is on a mild respiratory boost at the moment, and everyone expects that she will be back to breathing on her own within a day or two. This time, we need to take the physical therapy and usage of the Passy-Muir valve a little slower. The magic word today is "again"; we've seen all this before, although the infection is in a different place.

The ICCU (intensive cardiac care unit) on Moffitt 10 is different than 9ICU where we spent so many weeks. And much the same. Competent nurses, state of the art equipment. But it's quieter here, as the oxygen equipment doesn't make a continuous hissing sound. The main sound is her bed, an air bed with a fan running all the time. Every so often we hear the blood pressure cuff inflate, then there is a beep from the monitor as it figures out her numbers. Pulse 107 BP 99/56, SpO2 100, respiration 13, temp 37.8.

She is sleeping at the moment, prepped to go for an MRI scan of her spine to make sure there is no new abscess. She won't be back until 11 or midnight, so I'll be heading home shortly, as soon as she is taken out of here.

Love,
-tdc

Back to ICU (early day 37)

Over the last six hours, Nancy has been having increasing difficulty breathing. I don't know why, or even what the doctors might be speculating. So she just transferred back to an ICU, this time it's the Intensive Cardiac Care Unit on the 10th floor of Moffitt.

They've switched her back to a trache tube with an inflatable cuff, so that she can get breathing assistance. That's all I know so far, and I'll send an update when I know more.

I think it's time for more prayers.

Love,
-tdc

Out of the ICU (day 36)

It's a good thing I didn't send this at my usual time. It was a pretty quiet day until 8pm, with Nancy sleeping a lot after all her physical therapy yesterday. They didn't have a bed available in 14 Moffitt for her to move to, so she was staying in the ICU, and getting anxious. Then a room opened up, and boom, we spent a couple of hours preparing and then transferring her to the 14th floor. We're here, and she's finally resting.

Yes, Nancy is out of the ICU, after five weeks to the day (her first day in the hospital was on 11-Long, the heme-oncology ward).

She was getting short of breath before the move, so the PM valve is off to let her breathe easier. Some pain and anxiety medications have helped also. Stepping back and looking at the whole picture, I'd say that she got worked pretty hard yesterday by the physical therapy and the new breathing arrangement with the valve, and it set her back slightly. So delicate is her recovery, still. Sleep is the best thing.

Her new room is private, and she has a 24x7 sitter, a nursing assistant who can call a nurse and do minor things for her. I am hoping that this will be reassuring for her, to have someone with her in the room all the time. It's also quieter, although the NA tonight, Shanelle, is a bit of a chatterbox :-)

When I was leaving last night at 11, the family therapist and counselor for the unit greeted me, and we had a conversation about Nancy's future recovery. She'll eventually be spending time in a physical therapy center, which seems to be a lightweight residential medical facility dedicated to physical rehabilitation. The therapist suggested that I could start looking into various options now (here is an example), so that when Nancy is ready to leave the hospital, we will be all set up. It's rather wonderful that wisdom and resource seems to arrive when I need it...I haven't even thought about Nancy's extended recovery, although I know I can't give her 24x7 care. It's good to have some idea of what it will look like.

What a late night. Heading home now.

Love,
-tdc

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.

Love,
-tdc

A little hoarse... (day 34)

Everyone,

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.

Love,
-tdc

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.

Love,
-tdc

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 :-)

Love,
-tdc

Steady progress (day 31)

Everyone,

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.

Love,
-tdc

Return to spirit (day 30)

Hello!

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.

Love,
-tdc

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.

Love,
-tdc

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,

Love,
-tdc

The word is 'more' (day 28)

Everyone,

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.

Love,

-tdc

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.

Love,
-tdc

(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 :)

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.

-tdc

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.

Love,

-tdc

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.

Love,

-tdc

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.

Love,

-tdc

Not boring, dammit (day 23)

Everyone,

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.

Love,

-tdc

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.

Love,

-tdc

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.

Love,

-tdc