I lost control of the message, if I ever had control. Ken and I created a list of people I needed to notify personally. Unfortunately, while I was making those calls and writing those texts, Ken’s loving friends and family were also making calls and writing texts and posts. As such, many of you already know — and for that I’m grateful — but for those of you hurt by a bumpy roll-out of the news, I am so sorry. It’s hard to get bad news and even harder to get it by a side channel.

For those of you who aren’t directly in the path of this kind of news — you suspect but haven’t heard yet — Ken is gone. He died peacefully late Monday evening with me and our three kids at his side. We held his hands and talked to him, telling him how much we loved him, that we’d be okay, that he would be with us forever, as he took his last breath.  

He wasn’t able to speak toward the end. His systems started to crash during the night Friday and Saturday morning his voice was no more than a whisper. By mid-morning, he was answering questions with an eyebrow wiggle and a twinkle in his eye, so much himself that it made us cry and long for him to be okay. At one point, he started to get restless and I asked him if there were too many people in the room. He tried to say something but I couldn’t understand him so I leaned down to put my ear right to his lips. And in a whisper that was barely more than a breath of air, he said his last words to me: “Good all here.”

We decided, after he died, that he had waited for the end of the weekend, for everyone to leave so that he could have just us circled around him. It’s the kind of thing he would do, to bring everyone close but then give us our time with him too. There is very little to be thankful for right now but we are thankful for the gift of family all weekend and the gift of privacy at the end. Again, I mention no names but we are also thankful after he passed for the person who arrived 15 minutes later to help us with the final tasks: cleaning up the room, making an unexpected journey, hugging and comforting each other, silently being there.

Yes, we’re okay, if okay means grieving. Yes, we’ll be okay, if okay means that our lives are irretrievably changed and that we will learn how to be four instead of five. We know that death is part of life and that our sorrow will last the rest of our lives, though it will change as we change.  Today, we have nothing but disturbed dreams of loss and lost hope. Those will pass but for now we need time to grieve. We are deeply private people and your gift to us is that space and time to consider, to cry, to remember.

Ken was also deeply private and outlined his wishes clearly to me which I appreciate fully since this is a time when resilience is low and feelings are easily hurt. Here’s what he requested: No funeral and no viewing of his worn-out body. Instead, he requested that we have a get-together, as I’ve mentioned previously, a celebration of his life.

We’re still in the planning phase. I need to validate the proposed date with some folks. We’re trying to have it before Easter because his youngest son turns 11 the weekend after Easter. I’d rather not connect his dad’s death to our son’s birthday any more than it already is.

Everyone who knew him is welcome to join us at this celebration. I’ll provide the details once they are final. For those of you who cannot attend, please feel free to send me notes and memories. We’ll have something set up to allow them to be shared.

I won’t tell you to “hold your loved ones close” or anything like that. It’s meaningful to some to say that but it’s very difficult to do. Instead, I would suggest to you that you celebrate every day the lovely mundanity of life.

Much love …

Two weeks have passed in a blur — so much time when you are waiting for hope and so little when you have none.

The stents in Ken’s liver actually helped somewhat to improve the flow of bile from his liver. We saw a little improvement in his liver numbers on the Monday after his procedure. The next day, we learned that there was one last treatment option — experimental on colon cancer but well-received for breast cancer. His oncology doctor was excited about it; they agreed to start treatment on Friday. Ken would have to be discharged from the hospital but the care team would provide support to help him regain strength at home. Ken talked about returning to work in mid-April. We were filled with hope and excitement about Friday.

That afternoon, because Ken’s hemoglobin was very low, they gave him a transfusion, the first since he started treatment over a year ago. He was filled with energy and sat up in his hospital bed chatting with family. His color was good and our hearts were full. He went for a brief walk on Wednesday, with the help of a mobility aide. Finally, we had caught our break.

Thursday, he was restless and uncomfortable again. His hemoglobin numbers were dropping so his care team proposed another transfusion. We agreed but for whatever reason it was postponed to Friday, the day we were to leave for home and treatment. I left the hospital at 10 that night to buy some food for Ken’s return home and to prepare our living room for the hospital bed that would arrive on Friday. At 11:30, I got a call from the hospital. Ken had tried to get out of bed by himself and had slipped off the bed onto the floor, not really a fall but frightening as I contemplated having 24 hour responsibility for his safety.

Friday arrived and I hurried to the hospital because we had a full day ahead — discharge, treatment, and then home for the first time in 19 days. I will confess to feeling trepidation about his return home. He could walk once around the nurses’ station with assistance and a walker but he would need to make it through chemo, travel in a car to the house, and climb 4 steps to our house.

Many years ago, my dear mama told me not to worry so much, to “cross that bridge when I come to it.” She was right. I needn’t have worried about those 4 steps to the front door. Cancer is without compassion, having — this whole time — continued its onslaught. When I walked into Ken’s hospital room on Friday, he was in pain and feeling very ill. His liver function was terrible. The care team stopped his fluids, canceled his transfusion and came in to talk about options. The one Ken chose was to be moved to hospice. He recognized what we would not, that his body was failing even as his spirit was fighting to continue.

Ken didn’t “give up” (whatever that means) and tried, even here in hospice, to continue to improve but the cancer has continued too.  So, instead, we have gather around his bed and reminisced about various adventures we’ve had together. He is no longer able to join the conversation but we know he can hear us so we hold his hands and continue the stories.

Yesterday, the care team said he is crashing and so we’ve begun to stay here around the clock. The kids sleep on the sofas and lounge chair while I sit by his side through the night.

If you want to know what liver failure “looks” like, read on, because that’s what I’m going to share today. If you don’t want to know and you read this anyway, don’t say I didn’t warn you!

Liver failure looks like hope and then heartache, hope and then despair, hope and then sorrow. One day, his ammonia level is down and he’s clear-headed, though very weak. We leave late in the evening, after he’s settled for the night, enthusiastic about the day — he’s going to rally! — and looking forward to the morning.

And then morning comes and he’s groggy and confused, less able to stay alert or hold a conversation. Our euphoria from the prior day dwindles; perhaps today is the beginning of the downward spiral, the end of clarity.  It’s like a seesaw from childhood. One moment, you are dangling in the air, legs swinging, laughing. The next moment, your teeter totter “friend” has jumped off their seat and you’ve come crashing down.

Physically, as his liver failed, his skin has taken on a yellow tinge and the whites of his eyes have become yellow. If you’ve never seen this color change before, at first, it’s hard to recognize. On my olive-skinned husband, it looked initially as though he’d gotten a little sun. In comparison to my very pink Irish skin, his yellow tinge is very apparent.

If you think bodily functions are gross, you won’t appreciate this next part:  his urine is the color of teak wood. It just so happens, due to other cancer complications, that he has a catheter so it’s easy to pay attention to changes in urine color, in the collection bag hanging from the side of the bed.

To keep the ammonia level — and the confusion — down, they give him an orange-colored, corn-syrup-thick liquid called lactulose. Ken says it tastes awful. It also causes horrible diarrhea.

Another symptom of liver failure is his exhaustion and weakness. He literally doesn’t have the strength to get out of bed by himself. Yesterday, we went for a walk around the floor with the mobility aide but we only got a few steps before he needed a walker. Once he had that, though, they had to ask him to slow down!

When he’s alert, his mood is pretty good. He’s more peaceful, most of the time, than he has been through this whole horrible illness. That’s not always the case, though, and as his ammonia level increases, so does his irritability.

The GI doctor did a procedure on Friday to open his bile duct up. They put a camera down his throat, through his stomach, into his intestine, to his bile duct. (Do I sound knowledgeable? I’m actually a really good sponge (or parrot) but I don’t really know what it all means, beyond high school biology.)

Anyway, they were looking for blockages in his bile ducts as well as any stuff that might be clogging things up. The expected 30-minute procedure was more than two hours long. There were blockages everywhere. The doctor could only put in two stents, in the largest bile duct and its right branch. Monday we’ll know if they are going to propose doing more. The bilirubin level continues to rise and he’s terribly confused today so I am not sure their efforts could be defined as successful.

Thank you again for all your thoughts and well-wishes. I have been sharing them with Ken and he’s very appreciative.  Maybe tomorrow I’ll talk about how Ken is dispensing the stuff that is meaningful to him. It’s painful but perhaps it is reassuring to pass on things of personal significance while he can still explain their importance. Take care ….

I wrote a long blog over the weekend, sitting in the hospital room by Ken. Its content isn’t really relevant though, any longer. Over the course of last week, while doctors got his pain under control, Ken’s liver function continued to deteriorate. His liver MRI showed significant cancer throughout, much worse than what we saw in the PET/CT last month.

Increasing ammonia in his blood made him delirious and groggy over the weekend but his care team has succeeded in reducing the ammonia level. We’ve been celebrating some beautiful moments of clarity with him the past two days. Today he even sat up in a chair for about three hours, talking with his daughter and his sister. Later, resting in his bed, he and his younger boy tried to guess the Jeopardy questions on TV.  Todd, they agreed, really deserved his $25,000 winnings.

Today was lovely. It was also temporary. Ken’s liver has failed. We met with the oncologist and the palliative care team this morning to begin the process of moving him to hospice.

He doesn’t want a funeral or to be displayed in a casket. Instead, he asked us to have a get together like we did for his mom.  I’ll update you as I can.

I had another dream and, as I told a friend, although I didn’t completely wake up, I can remember that my dream self caused some sort of accident as I was walking along a sidewalk with a tall-ish dark haired man who was NOT Ken. Although it wasn’t clear in my dream, when I woke up, I felt very strongly that I had permanently maimed Tom Hanks, perhaps even paralyzed him.

Is Betty White next?! How about Sandra Bullock or William H Macy?! If I have to dream of doing terrible things to people, couldn’t I at least dream of maiming or killing someone really horrible?!

ANYWAY … You’ll never guess where we are right now! I’ll give you a clue…ping, ping, ping, ping …[silence]… ping, ping, ping, ping. Did you guess? I’ll bet some of you recognize the echo of heart monitors sounding off across the hospital wing! Yep, we’re back in the hospital again, since Monday. I’m hoping that we’ll be back home by Friday. He’s okay, not feeling great and not sleeping well, but I think that’s at least partially due to … well, being in a hospital.

Our current hospital trip started with a bout of unmanageable pain and sky-rocketing liver function lab results. Since he was admitted, though, the palliative team has changed the pain management strategy. He’s currently on a self-managed medication infusion which is helping some. In addition, he got another spinal MRI and ruled out any metastasis in his spine.  Today he had an ultrasound and an MRI of his liver. We don’t have the results yet but since it’s super late, I think we won’t know more until tomorrow.

I’m heading home shortly. Keep Ken in your thoughts and keep your fingers crossed that I don’t dream-kill anyone else! Much love ….