Susan Kobayashi

Susan passed peacefully at 5am with the three of us by her side. I am grateful that the kids were there at the end. I am grateful for all the love from the community. Her last words to me were, "I love you," in response to my "I love you." Her last acknowledgment was a smile when I said "I love you." Rest In Peace, my love.

Susan was completely unresponsive today, but we are all going on the assumption that she can still hear us and continue to talk to her. I'm still going through my Google photos year by year with her describing them as she cannot see them. Once in a while, I'll message people photos from years past if they are in them. Early in the morning, Susan's breathing rate was up, and in an effort to make her more comfortable, I administered morphine a couple of times. That seemed to do the trick as she has been breathing normally ever since. I changed her clothes and sheets once late morning, moisturized and massaged her, and am putting a yoga blanket on alternating buttocks to ease the pressure of the skin on her tailbone. Tonight, I moisturized her face with her favorite face cream. I am keeping her mouth moist with mouth swabs given to us by Eithne, her hospice nurse. As Susan is no longer drinking, I can't imagine that it will be much longer. Mina and Kenny are spending the n...

Last night, I pulled the couch next to the hospital bed to sleep such that if she woke up, I'd know, but Susan didn't try to get up. This morning, even though she had been off of medication for almost 24 hours, she was even less responsive: when I said "I love you," she didn't say it back but just smiled; she could only drink from a syringe, and even that wasn't happening later on in the day. In the morning, her breathing became more labored, so now that it was clear that the drugs were not the cause of her incoherence anymore, with the goal of getting her as comfortable as possible, I started administering them (as well as putting her back on oxygen), first Ativan, then morphine, then haldol. Susan's oncologist Dr. Rugo called me after I had texted her about Susan's condition, and she suggested just sticking to the Ativan, so midday, I gave Susan another 0.5mg of it, and that definitely calmed her breathing down to an "acceptable" rate. Dyla...

Susan's confusion and agitation continued even after I administered 2mg of haldol last night, but she did sleep continuously from 2am to 7am. In the morning, her confusion and agitation continued, so I administered some more haldol in addition to morphine as she complained about shortness of breath again. She continued to eat ice chips but has not eaten any solid food since yesterday morning. A hospice aid came to bathe her, and a nurse checked up on Susan suggesting to take her off the haldol to see if she would be less confused. I have not administered any drugs other than the blood thinner Eliquis since early morning, but even though she is no longer agitated, she is restless and is barely speaking now. She is looking afar in a daze. The only words I can coax out of her are "I love you," after I say "I love you" to her and her expression comes out of the daze momentarily. As of tonight, she is no longer wanting ice chips, but is drinking sips of water when of...

Today was the hardest day. It started early with a dose of Ativan which I think triggered confusion and agitation all day. Hospice and Dr. Rabow prescribed haldon which is supposed to address confusion, but higher and higher doses have not had an affect yet. The constant is that Susan is wanting to eat ice chips which addresses hydration, and she is able to urinate. Mina is spending the night so if I am up all night with Susan, she will be able to spell me. This is much worse than her birthday where she was knocked out all day. She is asking for nonsensical things but the ice chips seem to calm her at least temporarily. I know the Ativan was the trigger, but I won’t contemplate anymore about the contribution of her cancer progression and focus on solving the immediate issues, in this case, the confusion, agitation, and not sleeping. 

As noted yesterday, things can change quickly. Susan experienced increasing shortness of breath today, but as opposed to routinely managing it with morphine (and the panic associated with it with Ativan), Susan was reluctant to take either drug for a particular fear: what if they don't work? Susan's fear of not being able to breath is probably the number one issue facing her seeing that she is not in pain from the cancer. With this worrisome development, I contacted Dr. Rabow (Susan's palliative care doctor), and he pushed me to try to convince her to take the medications. With his recommendation, Susan relented, finally taking morphine (again, a very small amount of 2mg since it is not for pain), and I think it helped her to get to sleep.  She fell asleep relatively early but she has been getting up in the middle of the night trying to communicate something but is very foggy. I find that if I sit with her, her mind clears and we can actually start to talk about various thi...

 It is hard to tell what is going on. There are many signs that are pointing to Susan declining: She still isn't eating and drinking enough. She is getting physically weaker. She is still groggy even though the morphine at the current dosing shouldn't be a factor whereas it could be the progression of cancer. Once in a while, she is disoriented. Yet: She is eating a little bit more every day. She thinks she is gaining some muscle back though I don't see it. The grogginess might be from other drugs (Ativan, for example, but she is taking such a small amount when she takes it) as opposed to the cancer. Is it part of some healing process? Her mind is still very sharp even though her speech doesn't point in that direction. Mainly, I wonder about the power of her mind: She was convinced she was dying after getting scan results and experiencing her dire condition in the hospital.  She was convinced she needed oxygen after a panic attack she experienced when left alone in the ...