I have decided to update here to make it easier for everyone to keep track of Beth's progress. I will try to post regularly so check back. I have sent this to the people she asked me to update as well as others I thought of but please feel free to share with any of Beth's friends or family. The most recent is at the top. Allison
Beth died yesterday, late in the afternoon. It seemed that she just transitioned from sleeping to death. She was with family and it was peaceful. Thanks everyone for all the love and support.
We transferred Beth into inpatient hospice. She has not been that responsive most of today and we felt it was more peaceful and less disruptive to keep her in the same place. She was able to nod and shake her head in response to things today but not say anything. I took the phone around the house so she could see Blake, Ron, the pets, and the garden, which I think she liked. Lann, Erin, Jessie, and Charles came up in the morning, and then Laura, Richard, and Stacy came in the afternoon. Jennifer has been there most of the day as usual, with Ross also visiting. They have set up a Zoom so I can stay in the room on video.
As planned, they removed the dialysis and the big tube going into her neck today. She only has an IV for pain and anxiety medication now. Whenever she frowns or moves in a way that indicates discomfort, pain, or agitation, or if she is taking “hungry” breaths, the nurse will give extra medicine. I am advocating for them to just keep giving her a lot of medicine even without the indications. Someone is always with her, talking to her or holding her hand or smoothing her hair. I don’t have words for the gratitude I’m feeling right now, especially for Lann and Jennifer who have tirelessly stayed at her side morning to night, gathered information, advocated, made sure I was there for any conversation, and kept me updated moment by moment.
The various teams and doctors have all given different estimates for how long we have now. The palliative and hospice people, who should know this part well, think she will pass soon, but can’t narrow it down more than saying within the next 24 hours, although it could be within a couple hours, or possibly several days. But they all say that without the kidney support and based on what they’ve seen today, her awareness and consciousness has already begun to dim and will continue to decline.
When she was more aware, we read everyone’s messages, told her who sent their love, and just reminded her of all the people who were thinking of her and who loved her.
We stopped everything except the dialysis. It seems the kidneys will not recover anyway, the damage is too much (so if she made it out of this part, she’d most likely have to stay on dialysis). There is a possibility that she can come home for a few days with hospice care. When the doctors and palliative care team were there they discussed that plan and Beth said she did want to come home and was willing to endure the dialysis one extra day so we can make it happen. A hospice nurse is supposed to come and evaluate her tomorrow and then tell us how to move forward. In the meantime, though, Beth seemed to decompensate more, although it could be the atavan or whatever they gave her to make her more comfortable. If she is not aware of being home, or us, I don’t know if it makes sense to do it. We are stopping the dialysis tomorrow regardless of what happens with hospice, as that is what she wants. Once that is off, they estimate she will be lethargic and unable to interact within 24-48 hours.
At times she is as pragmatic and astute as ever. When talking to her brother and Jennifer, she said something like “why am I having to say goodbye so many times? In the movies they just say goodbye once and that’s it.” Later when I was on with her via facetime and told her that my aunt was sending her love, she asked me who else she needed to say goodbye to. We have been regularly updating her with everyone’s good wishes and love.
Currently Beth is more alert and is very adamant she wants to stop treatment. She spoke with her brother who is in Europe to say goodbye. We are waiting to discuss with doctors but I think that is what will happen today.
They have paused the chemo while they do the dialysis and stabilize her. The treatment for the reduction of white blood cells worked very well and the number is now too low, which is apparently typical. That is good as I believe her pain was caused by the high number. She is still out of it. Her oncologist called me the other day and said that although Beth’s body is responding in some ways, it is also weakening and she feels without meaningful improvement in the next couple days, we should stop all treatment.
When I spoke to her in the morning, she was out of it but knew who I was and understood what I was telling her about the house, the pets, Blake, etc. She seemed calm. Later when I spoke to her she was more distressed and annoyed, telling me to make them stop everything right now. She said the same thing to the doctors but then asked to watch TV and said she wanted to find out what was happening in the US and China. CNN seemed to calm her down. She says she is not in any pain. But she is very unhappy. We will respect her wishes and we can stop treatment at any time, but want to make sure she makes the decision when she is as aware and in her right mind as possible (while understanding that may not happen and we may have to assess on our own). I am in constant communication with family.
We have a close family friend who is a doctor and knows Beth’s case well. He feels it is not time to “throw in the towel,” that other than the heart issues (which haven’t killed her yet), the complications are common for this cancer and its treatment and he still feels there’s a strong chance she can come out of it and respond well to outpatient chemo. He has been to see her and the ct scan etc. It feels hard to believe that, though, and less so with every passing day.
One of the doctors explained that if we stop the dialysis and other interventions, her kidneys would likely stop functioning again and she would die peacefully within days. They would focus on making her as comfortable as possible, but because of the kidneys not filtering properly without the dialysis, she would likely not be able to interact with us or be aware of what was going on around her.
Beth has been out of it, slipping into a kind of delirium that may be due to the kidneys not functioning. They have decided to start dialysis. When she is aware, she is annoyed that she is still alive. Even before she slipped into this state, she didn’t really believe she was going to get better and wanted to avoid any suffering. The doctors have been optimistic, though, saying if we can get through this part there is a good chance she can go back to her life for a while. The chemo drug for her mutation is taken as a pill, from home. I’ve been telling her this, but because her current condition is so miserable, she doesn’t see it changing and doesn’t want to be in it any longer.
They will start the dialysis shortly, first giving more platelets. They also found a small bleed in her brain that they think was spontaneous and watching it but not too worried. She’s still really out of it and won’t/can’t take medication. She said she thought she was dead and wondered why she wasn’t. I really hope if she makes it through this part that she doesn’t remember it.
My cousin Jennifer from Australia has taken over from Lann who has been at Beth’s side for the last four days. Beth also had a video call with her brother David and sister in law Gailyn. David’s children Laura and Richard have visited, but it’s hard to say how much Beth was aware of at that point.
Last night Beth and I talked on the phone for close to an hour. (I cannot be at the hospital because Blake, Ron, and I have covid, although none of us is that sick.) At first she was depressed and hopeless and wanted this to all be over, but then we started talking about other things and I think she felt a little better.
The news has been up and down. The drug to bring down the white cells is working very well, they have reduced from a high of 119 now to 17, which is great. Her body seems to want to recover from the cancer, but there are these other hiccups along the way.
This morning Beth was very lethargic and her heart rate was up again. They gave medicine which brought it down. Kidney function has worsened the last couple of days so the lethargy could be the result of not filtering toxins and meds. She did start to feel better and was alert and has been able to talk to Lann who is there, and me on the phone. But at the end of our conversation, she was less aware, more out of it. They have said that both kidney injury and delirium are common with this kind of cancer/ treatment, especially in someone older. She still knows where she is and what’s going on, but slipping into these sort of reveries, where she talks about things that we don’t understand. They moved her bed so it faces the window, actually a view of fraternity row. They are hoping this will be better soon, but if not she may have to have dialysis. This is not a decision we have to make right now, as they are hopeful it will resolve. But if she does need it, they can do it in the hospital and then if it needs to be ongoing, she can decide if she would want to continue it at home. It feels premature to me to even talk about that, but they want us to be prepared. She said we’ll know in the next 2-3 days if the kidneys are improving. They are also doing a brain ct scan today because of the lethargy.
On May 10th, Beth had a routine blood test and when the results came back, it showed an elevated white blood cell count. The following week, her doctor repeated the test and the number had doubled. When those results came back, Beth’s doctor told us to go to the ER, that she would likely need a bone marrow biopsy to see what was going on. At this point, her doctor suspected a slow-growing leukemia not uncommon in older people, with a high likelihood of responding to outpatient targeted treatment. She said Beth may have to stay in hospital for 2-4 days.
After arriving in the ER, Beth quickly developed pain in the chest and back. It accelerated very quickly and became severe, not responding to regular pain meds. They did the biopsy and other tests and eventually moved her to the hematology / oncology unit where they started treatment. They discovered that instead of the slower leukemia, her diagnosis was actually acute myeloid leukemia, a more aggressive cancer of the blood. They think the pain was because of the rapid increase in white blood cells. She went from having 20(?) at the first lab to 40 at the second to a high of 119 in the hospital.
Over the first few days there have been ongoing complications with her heart, blood pressure, infection, and sepsis. A few nights ago they moved her to a MICU room so they could better monitor and stabilize these other issues.
For a couple of days she was in very intense pain that wasn’t responding to pain medication. Fortunately that subsided and she hasn’t needed much pain medication in the last few days. They think it was the reduction of the white blood cells that helped with the pain.
She has been feeling fed up and hopeless, but I know that was influenced a lot by the pain. She is also very weak and vulnerable, she’s unable to do anything for herself, and that is taking a toll on her mental health since she is typically so independent. On Sunday Lann, Erin, and Jessie came down and I think that cheered her up.
We’ve learned that this type of cancer and treatment is typically very rocky at the beginning, with a non-linear healing path. However, they have more recent targeted drugs for the mutation that she has (“FLT3”) and the oncologist told us that if Beth can get through this part, she expects her to be feeling a lot better within a couple of weeks. She said it’s not like 5 or 10 years ago when this kind of cancer for someone Beth’s age would be very hopeless.
But we have to get her to that point first, and it feels like every time there’s progress, something happens and she backslides. This has obviously affected her mood and outlook, but we are really trying to keep her hopeful and optimistic. We all know and she’s made it clear again that a long drawn-out miserable decline is not an acceptable option.
I’m sorry to share such sad news. It all happened so quickly, it has been overwhelming. She was planning to go out to an art show with a friend when she woke up on Wednesday, and then we ended up in the hospital instead. She had been feeling okay, a little more fatigued but not anything she felt was serious.