My Wife

I have had a lot of trouble over the last few days framing my response to my beautiful wife’s death. Obviously it’s something that is hard to comprehend, but it’s something that has been a long time coming. Amanda and I had no real delusions that she would find a cure in Texas, but what we did hope for was more time. We hoped that she could find treatments that could potentially prolong her relative wellness long enough for science and medicine to overcome her sub-type. Her only fear was of dying in Texas, away from Alastair, her parents, and from me. It sickens me that her worst fear was realized, but I have taken some comfort from the fact that she held her father’s hand as she lost consciousness for the last time.

I have cried. Boy have I ever cried. Seeing her so lifeless in the ICU—hooked to a ventilator but long since gone–was the single most horrible thing I had ever seen in my life, and during the interminable wait for the “comfort care” orders (those that would end her physical life), I was a train-wreck. I couldn’t even take comfort in the presence of her parents. I sat in the hall and watched for the nurse and just sobbed. Two strangers stopped and offered their support, along with Amanda’s nurse. When they told us to come in, that the removal of life-support was complete, I rushed to her side and whispered over and over for her to just rest. I held her hand, I watched her pulse slow from 130 to 30, and I loved her furiously.

I cried for the next hour, left in the room with her body and waiting for the off-shift administrator to come tell us what steps needed to be taken next, and felt completely empty walking back to the room. I cried off and on all the next day, and when I tried to explain to Alastair what it meant that Mommy had died.

I cry a little bit every time he asks me when she’s coming back, and every time I realize some minute aspect of our life-rituals has to change. In the weeks before her death, we finally got Skype working between the house and her hotel in Texas. Every night before bed we would call Mommy on the “computer phone” and pray with her. Tonight he asked if she has her computer phone.

But I’ve been deeply inspired, too. The outpouring of love, both virtual and physical, has been enough to offset a great deal of that pain. Cards have begun to arrive, as well as food, but what has really moved me is reading the online dedications from the Pajiba community. I have read them all, and while I have not been a frequent visitor to the site, I feel like a part of the family. Amanda exposed herself on Pajiba and her blog in ways that most don’t. In fact, she exposed herself in ways that would mortify privacy experts. But we decided from the start that her journey could help others find courage, strength, and healing. We also decided not to pull any punches, as our blogs would stand as a future history, undiluted, of what horrors she would go through. What amazed us both is that so many people actually read those posts. All of them. Her story became a lightning rod of hope and healing energy, and she was soon added to prayer lists the world over. People we’d never met were sending flowers (the first of which, received only 4 days after her initial admission, brought buckets o’ tears), books, movies, music, cards, apple-cakes, clothing, and *ahem* electronic devices. She cherished every single thing she received, and kept a very carefully organized folder of Amazon packing lists to write thank you notes.

I thought at first that I would not be able to read Pajiba’s dedication to Amanda, but the farther I read, the more the tears turned to laughs.

We never dwelt long on the subject of her “final wishes”, but she did outline a few:
1. Cremation. She frequently told me that if I didn’t cremate her, she’d come back to haunt me.
2. A New Orleans style funeral. Ultimately never serious about this one, what she wanted was a dignified sobriety to start off the mourning, but then a party to celebrate her life. Gotcha covered, babe.
3. Alastair to remember his mommy. And we’re going to work awfully hard to make sure that gets handled correctly.

My wife never thought she mattered. She always felt that her lack of an individually exceptional skill meant that she was destined to be forgotten, passed by, and generally ignored. It was an insecurity that she battled right up until those first flowers arrived at St. Mary’s. For your kind words, I thank you. For your love, I am indebted to you. For 15 years with my soul-mate, I am coming to realize there is no response. I feel like my soul has been attacked with a melon-baller, and I imagine that will continue for a long time. And for Alastair, just keep praying. He’s too young to really understand, and fortunately Amanda had already been away for the last month, so there’s no huge and immediate lifestyle change to cause him panic.

I miss her tremendously. She was so smart, witty, and sassy. She was also pigheaded and refused to accept new elements of her disease were actually symptoms. We argued endlessly over whether or not she should tell her doctors about her ear-pains, persistent indigestion, never-ending menstruation, avocado-sized (and shaped) bruises, and finally her leg pain. She refused to be hospitalized more than once when running dangerously high fevers. Hell, I almost had to drag her to the hospital last spring to get this all started, even though she was losing her vision and had nearly collapsed in the shower.

Yet for all of it I was fortunate to have that year with her. Undiagnosed, leukemia can kill within 3 months. She had already been experiencing symptoms for 7!

People have already placed blame for her death on her decision to go to Texas. Please don’t make the mistake of thinking that way. Amanda was fiercely determined to be in control of her destiny, and staying in Richmond meant palliative care. Houston offered hope and possibility. She knew the risks, but she also knew the potential rewards.

And if she had not died Wednesday, her condition would only have gotten worse. The pain and swelling in her feet were from hemostasis, which meant the blood was pooling and no longer flowing properly. We both realized the ultimate outcome of that would be gangrene and amputation, and the doctors later told us that her internal organs would have soon begun shutting down, leaving her without any sense of dignity and trapped in an ever-worsening body. She was, quite simply, very lucky to have gone the way she did.

And we were all blessed to have her for as long as we did. So say we all.

The Last 24 Hours

Not my last 24 hours: Amanda's.

Tuesday night, before Alastair went to bed, we had our last Skype call. Alastair and Amanda had a great time praying, and I went and fetched the kitties for Amanda to see.

A couple hours later (probably around 11:15 EDT), she called me, and we talked for about 15 minutes. The conversation was lighthearted, upbeat, and fairly mundane: she wanted me to return to Texas on Friday, we chatted about BSG (she had The Cable at MDAnderson and got to see the finale), and she told me she was feeling pretty well.

At some point in the night, she started experiencing dizziness and apparently vomited. By the time her dad got there in the morning, she was sitting in the bathroom with her head in her hands and very out of sorts. The staff helped her back to bed, where she sounded very groggy and couldn't get comfortable.

She raised her hand, and her father took it. They held hands for several minutes while she faded away.

A medical team rushed in and could not bring her around. They rushed her to the ICU where she was intubated, and had Ed notify me and Leigh to get on a plane.

A CAT scan was performed at some point and revealed she had bleeding on her brain. Her platelet counts had gotten so low that her blood vessels simply failed, and the bleeding put pressure near her brain stem, cutting off vital functions.

We arrived in Texas 5 hours later, and after almost 90 minutes of waiting were taken to her.

Her body was still functioning, but Amanda had long since left. It took over an hour to get the doctors to sign orders to remove life support, and once they did, she died almost instantly (10:15p).

Her parents and I were by her side.

Manda's not sick any more.

---

For those who are curious, I will leave her blog up. I might disable further comments, but I imagine I'll ultimately merge her posts and mine, cut it to PDF, and make it available to anyone who really wants to revel in all that pain.

My Baby's Gone