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 ...

Today was kind of a strange day. Susan was not shorter of breath and wasn't taking morphine for it pretty much all day, but she was more groggy and tired. It is hard to assess whether it is again a morphine buildup (it feels like the current 2mg is a buildup dosage) or this is part of the overall decline. Susan is physically weaker each day, but again, is that because of inactivity or the overall decline? Yesterday, it felt like she could go on for weeks or even months this way, but today, not so much. Part of it perhaps was the high of positive interaction with people virtually and in person, but that also is a balance since any interaction is really exhausting. EOL caregiving is such a balancing act. It is excruciating not knowing and trying to keep that glimmer of hope going, one day a time, one step at a time...

It was supposed to be a quiet weekend with just one "scheduled" event. However, with New Years coming up, so many people brought food and stopped by that it was so very busy. Susan and I appreciate all the good will. Note that going forward, Wendy has set up a spreadsheet so that meals will be more-evenly spaced out: https://docs.google.com/spreadsheets/d/1_SWZ1UGyAWCum0_2jOakDXkMQ1CzzgvMWgHa1y-G07I/edit#gid=0 Thanks for all your help. I think that the medication dosing is at a good level now, but it does take some tinkering, especially the morphine and oxygen. I upped the morphine level this weekend, and Susan's speech is a bit slurred and she is having a difficult time, for example, navigating Instacart, but, again, everything is sharp internally. Though exhausting, she said she was "oddly" happy to connect with so many people, virtually and in person. The conflict, of course, exists because of the reason for these more-intense connections. It is hard notice t...

Susan slept on her decision to discontinue the ozone intervention and confirmed it in the morning. The glimpse into "alternative" solutions was difficult. One is desperate to try things, knowing that it is a Hail Mary or worse. I think in the end, Susan is at peace with the decision, and there are no regrets. I can tell that she is still in complete control of her facilities internally even though the input and output is compromised. She is aware of how people are speaking to her and observes how people are reacting to the  current situation in person. She remembers how people are treating her and is very sharp in her analysis when we are conversing and recalling what happened during the day in a quiet moment. Her insights are profound (or, at least, deeper than mine, which many of you will not find surprising). If she can't understand something I say, she lets me know, but when I repeat it, I don't dumb it down, and she gets it. I'm going to assume that this is t...

 I'd like to acknowledge all the kind words and valuable advice I received after my last post. However, I will endeavor to keep this blog about Susan and her experience, not me. Susan had another ozone nebulizer treatment to today but opted out of a second one and also another IV. She is scheduled to have a consultation with the clinic that can administer the ozone IV tomorrow, but she will make a decision as to whether to continue down this ozone path tomorrow. Attempts at this ozone, etc. intervention are bringing the conflicts of interest sharply into focus: hospice is about minimizing risk, managing symptoms, and preparing loved ones for death. This intervention Susan is attempting is risky in her current state, symptoms are tolerated as long as the results are achieved and regardless of any collateral damage: the ends justify the means. I spoke to a hospice doctor around the issue of dehydration/rehydration today, and I came out of the conversation with a better appreciation o...

Today was probably too exhausting for Susan. It started out with a great relaxing Reiki session, but the amount of things we needed to do and plan (and not do) for this intervention was overwhelming. We were trying to get an ozone IV today, but for various reasons, we were not able to secure an appointment (nobody offers mobile service, so if we actually did secure one, Susan would have to travel--we will try it and reassess). Without the ozone IV, Jonathan wanted to book another Myers' Cocktail, etc. IV, even adding an extra liter of fluid since he felt that Susan was still very dehydrated. In consultation with the hospice nurse (with input from the doctor), hospice strongly recommending waiting a day since there is the possibility of Susan's body "leaking" via various effusions, so we had to make a decision with incomplete data. In the end, we decided to postpone the IV until at least tomorrow (depending on if we can secure an ozone IV appointment). We are definitel...

Susan continued to be groggy but not as bad as yesterday. Still, it was alarming how she was in a more dreamlike state instead of being lucid. Upon direction of Dr. Rabow, I have dramatically cut the morphine dosage. Eithne, Susan's hospice nurse checked on her in the afternoon and made it a point to tell me how weak she was, and for me to be prepared for changes either way. She suggested using the bedside commode instead of making Susan go all the way to the bathroom, and that was wise direction. The active treatment started with a Myers' Cocktail IV in the 6pm hour. The liter bag drained very quickly indicating dehydration, something that I'm concerned Susan's hospice care team didn't diagnose. I had reported that Susan was drinking water and urinating, so that might have colored any perceptions. She started feeling better and more alert, I think. IVs are outside of Susan's healer Jonathan Chu's fee, and there will be more to come including the Ozone IV as...

I was able to get Susan to the bathroom last night and this morning, and she has been drinking water throughout the night. She is still groggy and I woke up finding looking at her phone and laptop. Please note that if she responds to you, right now she is not 100% lucid, still groggy from the morphine I think. 

First of all, I'd like to acknowledge all the birthday messages, flowers, food, and cakes that Susan received today. She has been asleep all day and could not acknowledge them herself.   Last night was extremely rough as she could not get to sleep because she was coughing so much. Under the direction of her palliative care doctor Dr. Rabow, I increased the dosage of morphine, but it was not until early this morning that her cough subsided. Dr. Rabow thought perhaps the coughing might be a result of another clot in her lungs. The blood thinner Eliquis that Susan is on does not dissolve clots--rather, it holds them at bay hopefully enough for the body to get rid of clots on their own. The abruptness in which Susan's cough subsided might be an indication that the new clot resolved itself with the coughing if indeed that's what caused the coughing in the first place. The sleep and grogginess were equally as alarming, but even in her half-conscious state, she was hungry and thir...

We have started to create a routine over the last couple of days as all the preparation and setup for home hospice is now complete. I was able to get Susan up to our second floor bathroom and help her with her first shower since her hospital admission, a welcome event, and she is starting to eat a bit more each day.  She is still dependent on oxygen, and, in addition to using a cane to go from the bed to the bathroom, I am now holding her other hand for additional support as we had one scary incident when she almost fell going back to the bed. Tonight has brought another hiccup, though, as her constant cough has returned (it had subsided with the introduction of oxygen at the hospital), so we have increased the morphine and oxygen level, but so far, it is still an issue. As it is pretty clear to us that while hospice is a welcome situation to make Susan as comfortable as possible, nothing is being done to address the cancer which, of course, is by design. With that in mind, she has...

 Two hospice events today: A visit from Susan's social worker, Tasie. A visit from Susan's nurse, Eithne. Tasie was very matter-of-fact and went over many of the logistics including paperwork that needed to be filled out (resuscitation wishes, donation of body to UCSF). By the Bay provides an extensive handbook including a sober EOL description that, while difficult to read, was very important with respect to what to expect especially close family interaction at the end. Being prepared helps everyone involved. Eithne was very warm and empathetic while at the same time very efficient in going over medication, making suggestions, and administering care. For example, she suggested upping the morphine dose for Susan's shortness of breath a certain way and described various drug interactions from experience. I believe Susan is now breathing more easily with the increased dose (not anywhere near dangerous as the requirements for addressing shortness of breath are way below that f...

Again, I'd like to first say how much we appreciate the generosity of the community. We now have more than enough great food to last for a while. Thank you so much. Many people we talked to mentioned wishing they had started hospice sooner than they did. With that advice, we signed up with By the Bay (they have a connection with UCSF) ASAP: -Suzanne, a nurse came late morning with the papers to sign and introduce us to their care. -A hospital bed and bedside commode were delivered in the afternoon. -Meds arrived early evening. Dylan and I rearranged the furniture (twice) to accommodate the hospital bed in the living room. Susan had been sleeping on a couch, and the bed is a great improvement (as to be expected). Hospice takes over everything quickly and efficiently. For example, we had been waiting on a hospital bed since Susan was discharged (hence, the couch sleeping) as opposed to the hospice bed that arrived same-day. There was initially some miscommunication so we were a bit w...

First of all, I'd like to express my gratitude and appreciation to all the support, love, and positive energy you have directed toward Susan. Previously, I mentioned that Susan and her oncologist Dr. Rugo were contemplating a next treatment (FU-5) if Susan were strong enough. Today, I think that there was a mutual decision not to continue with any cancer treatment. Susan's shortness of breath, fatigue, and other associated symptoms are increasing, and her weight loss has been dramatic as she has been eating (and drinking) less and less. Susan's palliative care internist Dr. Rabow prescribed morphine for the shortness of breath, and I think it is helping--she was ate some ice cream a couple of times today (there goes the no dairy/no sugar routine) along with other things. Dr. Rabow and Susan also discussed EOL and hospice (the 2 are not mutually exclusive), and, at this point, we will set up home hospice as soon as we can with the goal of keeping Susan as comfortable as poss...

Susan's health took a turn for the worse last week: She had been short of breath and coughing for the past couple of months, but her shortness of breath became bad enough last Wednesday that we took her to UCSF Mission Bay acute care. They immediately assessed that she needed to be put on oxygen and needed to be admitted (but a bed at UCSF Parnassus). The process was quite a nightmare, but she finally got a bed some 36 hours later. In the meantime, they assessed that she had several blood clots in her lungs and fluid in the area next to her heart. She has started on blood-thinning medicine and they drained the fluid. More serious was the CT scans that showed progression of the cancer in her lungs and liver meaning that the immunotherapy trial in which she was participating was not working. She is now off that treatment and is scheduled to start a different treatment (FU-5) IF she is strong enough. Susan was discharged today, and an oxygen concentrator and several tanks were deliver...

We will use this blog to update people on Susan's health.