Wednesday, July 9, 2014
Memorial Service Still to be Determined
Chris has three children who will be collaborating with me and Chris's first wife to arrange for a celebration/memorial sometime in about a month.
Sunday, July 6, 2014
11:11 pm 7.5.14
Chris died last night.
Yesterday, he began to have a mighty struggle with breathlessness and was restless with delirium --the intensity increasing into the evening. His friends from grade school were here and held a long reminiscence in the room with Chris, other friends simply gave him a kiss, and all offered words of encouragement.
Olivia and I had consultations with multiple medical people: hospice folks, a childhood friend who used to be a hospice medical director, a friend hematologist-oncologist, and another friend with expertise in the mechanics of moving seriously ill people. All agreed that our job was to use the provided medications, music, and quiet stroking to keep Chris as comfortable as possible. I cannot say with enough emphasis how much we needed their wisdom, knowledge, compassion, and encouragement to manage a situation that was feeling increasingly out of control and frightening.
Then, suddenly, it was over.
He simply turned in the bed, from his back to his side, and his breathing stopped.
We are now collecting ourselves, crying suddenly, and other times laughing. The emotional dials are still set high. Dinner tonight at a favorite restaurant had the feeling of sacrament as we ordered dishes Chris used to eat and passed them among the 9 of us: Lily, Olivia, Alex, Fathi, JoEllen, David, William, Aunt Helen, and me. Then back home to indulge in the spread of sweets earlier brought by so many friends who were also in pain at the loss of Chris.
It has been 19 months of hope and disappointment, reordering priorities, bearing indignities, and finally giving in to the inexorable. Chris was exhausted and defeated. I am not sure if I am supposed to admit that, but it is true. Fighting cancer can be harsh.
We are planning some sort of celebration of Chris's life, a month or so from now. Plans will need to evolve as we clear our sense of what feels right, what makes sense. I will post more when we know what we want to do.
Yesterday, he began to have a mighty struggle with breathlessness and was restless with delirium --the intensity increasing into the evening. His friends from grade school were here and held a long reminiscence in the room with Chris, other friends simply gave him a kiss, and all offered words of encouragement.
Olivia and I had consultations with multiple medical people: hospice folks, a childhood friend who used to be a hospice medical director, a friend hematologist-oncologist, and another friend with expertise in the mechanics of moving seriously ill people. All agreed that our job was to use the provided medications, music, and quiet stroking to keep Chris as comfortable as possible. I cannot say with enough emphasis how much we needed their wisdom, knowledge, compassion, and encouragement to manage a situation that was feeling increasingly out of control and frightening.
Then, suddenly, it was over.
He simply turned in the bed, from his back to his side, and his breathing stopped.
We are now collecting ourselves, crying suddenly, and other times laughing. The emotional dials are still set high. Dinner tonight at a favorite restaurant had the feeling of sacrament as we ordered dishes Chris used to eat and passed them among the 9 of us: Lily, Olivia, Alex, Fathi, JoEllen, David, William, Aunt Helen, and me. Then back home to indulge in the spread of sweets earlier brought by so many friends who were also in pain at the loss of Chris.
It has been 19 months of hope and disappointment, reordering priorities, bearing indignities, and finally giving in to the inexorable. Chris was exhausted and defeated. I am not sure if I am supposed to admit that, but it is true. Fighting cancer can be harsh.
We are planning some sort of celebration of Chris's life, a month or so from now. Plans will need to evolve as we clear our sense of what feels right, what makes sense. I will post more when we know what we want to do.
Saturday, July 5, 2014
7.4.14
It was midnight, booms of final fireworks intermittently punctuating the quiet of a surprisingly cool Fourth of July night. We were all ready for bed and settling in. Chris in our bed downstairs, Alex in his place upstairs, Cousin David in one guest room and I was in the other. Then, Alex heard commotion from Chris, thought he heard his Dad wandering, and then the sound of a fall.
This was altogether not the day I had expected. What I had planned was to welcome more friends making final visits with Chris, reminiscing, comforting, and sharing food and drink.
Instead, in the early morning, Alex presented me with the frightening sight of his elbow, angry with swelling, and a clearly demarkated central wound with striations of redly pathed infection running up into his armpit. He had a fever and felt terrible.
Friends arrived, hoping for a last visit with Chris, but were instead met with me in full flush of mommy angst: What is happening to Alex? What needs to be done? How can this be happening now? Olivia arrived to manage Chris and I rushed Alex to an immediate care center. He was diagnosed with cellulitis (probably a spider bite?), given an antibiotic shot in the butt and sent home with two oral antibiotics, still feeling sick. We were told to watch him closely because this might be the kind of infection that would require inpatient care.
What the hell is that saying about "you only get as much as you can handle"? I call BS.
Still, we got through the rest of the afternoon and evening, kind of tired and spent.
Thursday, July 3, 2014
Emotional Fireworks
Olivia jumped on a plane Monday after I gave her the news and endured a genuinely horrible set of flights/redirect flights from Duluth caused by summer storms, resulting in bilious turbulence and delays.
Lily arrived today, only after her own set of cancelled/rescheduled flights because of a hurricane up the eastern seaboard. (I think it was harder for her to get here than I know).
With Olivia and Lily and Alex, Chris had all his children here, all day, and I think this means everything to him.
Jo Ellen came early, followed shortly by Aunt Helen. They brought shared histories and memories that no one else can possibly appreciate. With the kids, they brought bedrock love.
Many friends have come over these last two days. So many good friends from far and wide. The house has been animated with conversation, food, and drink. Chris participated actively and then passively, finally took a 4 hour nap, but then joined us again in the evening.
More tomorrow, as folks are sort of spanning their visits out, to keep the bustle manageable.
The tumult has felt like a celebration, a validation of Chris's importance to people over the course of his life. And I am struck with wonder at it all. There's not much more that can be done now. But this feels right.
Lily arrived today, only after her own set of cancelled/rescheduled flights because of a hurricane up the eastern seaboard. (I think it was harder for her to get here than I know).
With Olivia and Lily and Alex, Chris had all his children here, all day, and I think this means everything to him.
Jo Ellen came early, followed shortly by Aunt Helen. They brought shared histories and memories that no one else can possibly appreciate. With the kids, they brought bedrock love.
Many friends have come over these last two days. So many good friends from far and wide. The house has been animated with conversation, food, and drink. Chris participated actively and then passively, finally took a 4 hour nap, but then joined us again in the evening.
More tomorrow, as folks are sort of spanning their visits out, to keep the bustle manageable.
The tumult has felt like a celebration, a validation of Chris's importance to people over the course of his life. And I am struck with wonder at it all. There's not much more that can be done now. But this feels right.
Tuesday, July 1, 2014
Sad news
Yesterday, the oncologist told us that Chris has 2 weeks to live.
We have him at home and hospice care started yesterday. He is more alert in the morning and tends to become tired easily, but he is willing to have folks come to visit for short stays.
If you want to stop by, noon and onward will be best. Late afternoon and evenings are not good as he is tired by then.
It has been a long road and Chris says he is tired of it. Our wish is to make him as comfortable and feel as loved as possible in the time remaining to us.
=======================================
Thursday, June 26, 2014
Perhaps I misunderstood
It is 10:42 pm and the oncologist has not called. Maybe I misunderstood his last email about talking with us tonight. He did say Thursday or Friday evening. But I replied that Thursday is best. I don't know.
Maybe his plane is grounded somewhere (he said he would be traveling) or maybe some other eventuality interfered with calling.
Chris and I do know that Penn is not likely to happen anymore. The signs of aspergilliosis are convincing (it is a definite rule-out for the trial) and Chris says that he doesn't think he can withstand the treatment of the trial.
We have already talked about these being the last months of his life. Chris is resolved and quite sober about this happening. He is tired of being sick and tired of transfusions.
Chris got two units of red blood today, which is unusual since they usually just give one at a time. The difference in his energy and alertness was dramatic. He went from seeming desperately ill this morning to engaged and almost perky this afternoon. Going from one extreme to a relative other is hard to absorb. It is like saying hello and goodbye, over and over.
Maybe his plane is grounded somewhere (he said he would be traveling) or maybe some other eventuality interfered with calling.
Chris and I do know that Penn is not likely to happen anymore. The signs of aspergilliosis are convincing (it is a definite rule-out for the trial) and Chris says that he doesn't think he can withstand the treatment of the trial.
We have already talked about these being the last months of his life. Chris is resolved and quite sober about this happening. He is tired of being sick and tired of transfusions.
Chris got two units of red blood today, which is unusual since they usually just give one at a time. The difference in his energy and alertness was dramatic. He went from seeming desperately ill this morning to engaged and almost perky this afternoon. Going from one extreme to a relative other is hard to absorb. It is like saying hello and goodbye, over and over.
Wednesday, June 25, 2014
More news Thursday night
Oncologist says he will call us Thursday evening with results and planning.
It is hard to wait, patience has never been easy.
It is hard to wait, patience has never been easy.
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