
Since late October, I’ve been re-living the same time last year, the final fifty-six days of Nancy’s life, in the ICU at UCSF. When I went through the experience, I just had to show up each day, fully present, in the parts of me that could function while seeing my beloved on full life support, completely self-aware. Now I’m remembering the horror of it, how I had to negotiate with all my internal scared and young parts that could not deal with the challenge, tucking them away safely before walking into the hospital. It was the most difficult period in my life.
December 4th was the day that we found out that Nancy’s spinal abscess had returned, and that it could not be operated on. It was a decisive day, we all knew somewhere in our hearts that she would not recover without some kind of miracle. I wrote:
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.
As I approach the anniversary of her death, I’m contemplating all of what I have learned and developed because of her, and thinking about what I want to do on the anniversary to memorialize her, celebrate her, and release her. I’m also remembering all my love, encouragement, devotion, fear and pain.
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