Peter died tonight, March 15, 2013 at 7.15 pm Eastern Standard Time.
We had a substitute nurse today and she was/is great – very caring, very compassionate, very professional. She gave me some good advice, and not once mentioned the ‘end of life’ phrase. I’d love her to be our hospice nurse, but unfortunately she only works a limited amount of time, and is basically a sub. However, I told her I didn’t want Beth, didn’t like her affect, didn’t like the way she talked about hospice, didn’t like her seemingly rigid point of view. This will be transmitted to the appropriate supervisor and a new nurse appointed. I’ll keep doing this until we get it right. The two we’ve seen thus far are certainly competent, that’s not the issue, but the personality really matters.
We’ve decided that a hospital bed is the best solution for Peter, as he’s so very weak. That arrives today, and fortunately Sarah and Dennis are here to help advise on the best placing for the bed, etc. Peter wants it to be in a position where his large monitor is available on its swing arm, so he can see what he does on his laptop easily. He now has an Asus tablet, which is a really cool device, so he’s quite well-equipped technically – hardy surprising!
(I haven’t brought up the two servers awaiting some TLC, so yes, we’re very well organized electronically).
Back to hospice: they seem to have issues regarding their drug ordering system. As I understand it, they have a new system in place, but not everyone seems to have gotten the message. In our 10 or so days with Duke Hospice, there have been two slip-ups regarding prescriptions, and needless to say, I’ve registered both my complaints and suggestions re improvements. Popularity is not my aim.
So, today will be organizing the new bed, and spending good time with Sarah and Dennis.
While I know we can leave hospice at any time and check back into curative care, I’m in the process of debating the why’s and wherefore’s of this type of decision.
Over the course of Peter’s illness, I’ve developed a healthy skepticism towards most things medical. As I’ve previously stated, it’s so important to question everything, to do your own research, to consider other approaches and options, and that’s what I’m doing now.
Yes, I understand that hospice care is palliative – comfort is the goal, and that’s certainly a laudatory goal. Hospice also means that regular tests, such as blood work, scans, etc., are no longer done, as presumably it’s considered there’s no point, since you’re at ‘end of life’, as they say rather constantly.
Given the data driven nature of Peter (and myself), this doesn’t sit well. For example, Peter has some liver issues, and I said to our hospice nurse that we need to check his liver enzymes. Her answer: well, we don’t do that, we just manage symptoms. Ok, I’ve learned that nurses, while often very knowledgeable, are beholden to the medical hierarchy, and never step out of line. However, I’ve often had talks with nurses in the middle of the night, and strictly off the record, but they’ve frequently seen what they consider to be errors in judgment regarding treatment of a patient. Not surprising, as they’re around much of the time, and the doctor is seldom there. But a hospice nurse is in a very different environment, where doctors exist mainly to prescribe various medications, as requested by the hospice folks, so they see things from quite another perspective, and don’t seem to fall into the hospital-type nurse category.
I’ve already stopped a couple of hospice-given meds for Peter, and will feel free to do so, as Peter’s body responds or doesn’t to this and that. This is in full agreement by Peter – we consult on everything. I inform our hospice nurse of course, but she knows it’s our decision.
So we’re thinking about hospice. Now, Peter needs the comfort care, which is largely anti-nausea meds, and possibly a sleeping aid, but hey, I could ‘prescribe’ those! Joking aside, I truly appreciate what hospice does and the care and thoughtfulness of the people we are working with. And I do understand that anger, denial, all those good words, are common companions in this sort of highly stressful situation. But our minds (Peter’s and mine) are functioning extremely well, and we naturally question and discuss and consider.
I feel quite strongly that there’s something missing, but I don’t as yet know what it is. I’ll continue pondering, and it may be that I’m trying to adjust to a situation and haven’t yet done so, or it may be that there’s something else we can do, and I haven’t identified it yet.
More another time.
We’re a small but close family and everyone is here and/or available for Peter (and me, but Peter is first and foremost). Kristina arrived from San Francisco a few days ago, and has spent a great deal of time being with Peter, talking with him, telling him her plans and listening carefully to his advice and suggestions, which are always spot on.
Jason is here daily, and since he lives 10 minutes away, conversations can be more spaced out, but he too, has been talking so much with Peter. Both understand the very positive influence Peter has had, and will continue to have, on their lives. It’s so important to have these conversations, and to be truly open and forthcoming.
There are of course others: son-in-law, daughter-in-law, siblings (mine and Peter’s), and so on, but the focus right now is on Kristina and Jason.
So, thoughts. This is hard, harder than I could have imagined, should I ever have imagined it. It’s never occurred to me that there is any other option than to give Peter the love and care and relief from outside stresses that he needs right now. In talking with various non-family folks, I’ve found out that it’s quite frequent that spouses or other close family members are unwilling to take on the caretaker role, or perhaps do it reluctantly. I can understand that at one level. But having spent the better part of my life with Peter, and having worked closely with him for more than 30 years, in a way it’s a natural process to move into yet another stage together. I know with absolute certainty that he would do the same for me, should our roles have been reversed.
Peter’s determined to write up his vision for the future in terms of information access, and has started a power point to that effect. We bought him a tablet to make sure he has an easy way to note down ideas and so on. I’m not going to delve into his vision, but suffice to say it’s typical Peter – very far-sighted and visionary on the one hand, but also based in practicality.
The nature of this blog is changing a bit, at least in my head, and the above seems a bit of a random collection, but to me it’s part of a whole, which I hope will become clearer in a while.
So family visits, talks, thoughts, being together, making sense of a life of ideas and carrying them out – these are the sorts of things I’m thinking about as I deal with the day to day aspects of caring for Peter.
So here we are in our apartment, which as everyone says (everyone being family thus far) is ‘us’. We’ve always liked bright open spaces, and we like being downtown, although I haven’t really figured out what constitutes downtown in Durham.
We’ve had a week of Duke hospice services, which included admissions nurses, our nurse, Beth, a social worker, Jan, and suggestions for using a CNA (certified nursing assistant, I think), which we’ll do next week. All are wonderful, caring, thoughtful, and professional folks. They’ve all asked Peter’s goals, which remain the same – to regain as much strength as possible in order to move back into curative drug regimes. We both know this is hard, but we’ll give it our best shot.
How are we? Peter and I were talking the other night, and Peter said he was happy. Now that seems an odd term to use right now, but Peter’s always had the ability to live now, and other than the continuing (but lessening) stomach issues and fatigue, he’s generally all right, and in a good frame of mind. Jason comes over every day, and he and Peter have great talks, ranging from deeply philosophical to the mundane. They’ve always been close, and these times are very important for both of them.
Kristina arrived late Thursday night, and is staying with Jason and Nina. She spent all day with us yesterday, and will do so every day until she returns to San Francisco on Tuesday. She’s a wonderful support for both of us, and she too is very close to Peter, and is a loving daughter full of ideas and actions and plans which Peter loves hearing and making suggestions and comments. Kristina is a very centered person, as is Peter, and it’s a joy to see them interact.
Me, my days involve helping Peter, dealing with all the various mundane issues that arise in any life, and planning for excursions, small and large. Small meaning a 6 block ‘wheel’ to the farmers market, large meaning a trip to England (which we both consider home) should that be possible. Even smaller – making sure that Peter eats enough, and trying to cater to his changing tastes, which do vary within a day as his stomach settles or makes waves. And larger – testing Peter’s walking ability which is a bit better.
More me, I’m happy to be with Peter and to help him in every way I can, and yes, I now count myself officially as a caretaker, because that’s what I do, and will continue to do. And I cherish all the many activities and tasks involved in caretaking, because it helps Peter, or gives him comfort, or relieves him of stress. I’m much less good at taking care of myself, and I know I need to do that if for no other reason than to ensure I’m available for Peter.
Friends and colleagues have been emailing and calling us, since the word has spread about Peter. It’s heartening to hear from so many people. In this situation, life is pretty much reduced to an extremely ill person and the small, but vital world of medical and personal care. Not much else really exists, but having family around, and visits and messages from friends and colleagues makes one think of the wider world and makes one realize that there are a lot of folks out there who think of us, or Peter especially, and who care in many different ways.
And we appreciate each and every thought and prayer and wish and message.
MeIt’s a hard time for everyone, but sharing the burden helps enormously.
It’s been some time since I’ve posted a blog, in fact about two weeks ago. I started to write an entry about 8 or 9 days ago, which was to be called something like ‘and on it goes and on it goes’. I didn’t finish it, and now I’ve trashed it because we’ve had really bad news.
In my last entry, Peter was still in the SNF, but that ended quickly. On Monday, 25 February, we had a regular appointment with Dan George (oncologist). All was going as it usually does until Peter said he had loss of temperature sensation from about his waist down. Dan’s face dropped – I’ve never seen a medical person look that way. He said clearly there was neurological involvement other than the leg weakness, so Peter must be admitted to the hospital immediately. This time however, we didn’t have to go to the ER, and pretty soon Peter was back in 9300, the oncology ward at Duke. Nina was dispatched to the SNF to get Peter’s things, Jason helped marshal Peter to the floor, I moved the car, etc.
Many visits from various attendings, kidney specialists, oncologists, spine guys happened. Peter had kidney failure once again, but massive IVs arrested that. The best person we saw was an attending, Dr. G. (Tony Galanos), who specializes in palliative care. (For those who don’t know the term, palliative care means comfort, as there is no cure for the cancer, or whatever disease it is). Dr. G. was superb, as were all the nurses and others on 9300.
But then Thursday morning happened: Dan George came by and said that medically there was nothing further that could be done, as Peter’s body is too weak to withstand any more chemo or other attempts to delay and/or arrest the cancer. That’s the news no one wants to hear, but now we’ve heard it. It was a very emotional few hours, and that continues. I called Nina and said she must find a new apartment for us that very day, and she did. Movers were organized, Dr. G. delayed Peter’s discharge from the hospital until Friday, as he still had a fluids IV stuck in him. We spent Friday night at the Washington Duke Inn as the movers couldn’t be organized until Saturday.
We cried, we talked, we planned.
We decided to opt for in home hospice care for Peter. That means that we’re officially enrolled in the Duke Hospice Service, and assigned a medical team, a nurse, a social worker, a nurse assistant, volunteers, and a chaplain. The first few are requirements, but the volunteers and the chaplain are, well, voluntary.
Peter can opt out of hospice should we choose to do this. If he gains strength enough to return to ‘curative’ then he’ll opt out. Some days I think this is possible, other days I’m not at all sure he’ll regain strength.
So that’s the truly bad news. (For everyone I’ve not been in touch with, my apologies, but I’m sure you’ll understand).
We’re in the new apartment, which is in the warehouse district in downtown Durham. It’s a lovely bright space full of exposed brick, very high ceilings, industrial fittings, etc., as befits a converted tobacco warehouse. We’ve seen the nurse, Beth, who is wonderful, social worker arrives tomorrow. Peter’s main issue is his stomach, but Beth is helping sort that out. But extreme fatigue continues, and now Peter is pretty much wheelchair bound, as his legs are so weak, but we’re adapting. He has a walker for when he gains more strength in his legs.
Peter’s medical team consists of Dan George and Dr. G. (see above). Dr. G. is a warm, caring, and extraordinarily sympathetic guy. Remember my saying only young docs are any good? Well, I think that’s true for all specialties except palliative care. Dr. G. is probably mid-fifties or so, and helped us so much that last day in the hospital and over the weekend as well. He wrote out a number of prescriptions, the last of which said Peter – Be Selfish. And that’s what needs to happen.
More in a day or so. Kristina arrives tonight, Jason and Nina have been wonderful, Sarah and Dennis are showing up next week.
It’s been a tumultuous couple of weeks. We had a visit from Peter’s sister Pam, from Port Elizabeth, South Africa (on the Eastern Cape for those who can’t pinpoint PE). We were planning to have her write a ‘guest entry’ on this blog, but that never happened. Suffice it to say that the three of us (sometimes with Jason and Nina) had many enjoyable chats, and Peter and Pam particularly re their shared childhood and so on.
However, the day before Pam left, we took a small drive to Jordan Lake (Pam’s an avid sailor, as is Peter) on a rainy, foggy day. When we arrived, Peter got out of the car and stumbled, which immediately sent up huge red flags for us both. We decided to see if his legs would improve, as fatigue can do strange things as we know, and with Pam’s visit, we’d had an unusually active few days.
The next day, we drove Pam to the airport, and once again, as Peter got out of the car, he stumbled quite badly, so we left Pam to make her way from the parking lot to the airport, and Peter and I sat in the car while I contacted various triage folks at Duke, and of course, the next step was Duke Hospital ER, once again.
So now it’s 8 days later. Peter was in the hospital for 7 days, and was discharged yesterday (Thursday) to an acute rehab facility in north Durham. So here’s what happened: Peter had severe dehydration, despite our constant efforts re drinking and eating. The diagnosis was kidney failure, although that didn’t actually happen. Many IVs of saline solution and many days later, Peter’s no longer dehydrated, although there’s a constant danger of that. The radiation burn on his throat, which while greatly lessened, still causes him problems in drinking and eating, and clearly that had a greater effect than we had thought. Another issue, which caused the leg weakness, is a swelling on C3 (cervical vertebra), which is worrying, but hasn’t led to a compression or fracture. It took 4 days and many scans, etc., for this to be both discovered and determined. Of course, spine guys (as I call all neurosurgeons, male or female) showed up in their usual less than affable selves, speech therapy people provided swallowing help for Peter (we never knew there were so many ways to swallow), oncologists of course, physical therapy types, and a constant stream of other medical types. We were once again on the oncology ward at Duke, and I stayed 24 hours a day with Peter except for what we thought would be the last night.
And why wasn’t it? Well, Peter had a ‘collapsed fall’ the morning of the presumed discharge, so it was decided that rather than go home, Peter really needed intensive physical therapy in order to regain strength and balance, caused by the problems in his spine. So another night, and then ambulance to the SNF (sniff), or Skilled Nursing Facility. Peter’s on his second night there, and after a very rocky start on Thursday night and Friday morning, he’s ok there, and I’m ok with his being there.
Rocky because said facility missed his meds, and a few other sloppy things, but I raised holy hell with them this morning, occasioning a grand meeting with all the top brass there, and my making many demands, all of which thus far are being met. Demands – a private room, meticulous attention to the meds, including their timing, no snarkiness from the staff (for example, one staff member commenting in Peter’s presence that they had too many folks with neck braces), and so on. I’ve given them a deadline to continue to meet every demand in every detail, or we would move Peter to another facility (arrangements already in place). I have everyone’s cell phone, so does Peter, and I’m sure things will go smoothly from now on.
On the bright side, most of the staff there are genuinely caring people, and the physical therapy is top notch, which is what Peter needs. You know Peter: as soon as he met a piece of equipment and was given a time and a goal to meet, he exceeded it, which made him feel a whole lot better. His days will be spent doing physical and occupational therapy (I now understand the difference – OT involves ‘living’ issues, such as making sure Peter can handle general day to day activities with ease, or with accommodations, depending on his mobility). Well, we don’t know how long he’ll be at the SNF, but we’re confident he’ll emerge from it stronger and with less danger of leg and arm weaknesses.
Neck brace: because C3 is involved, his neck is possibly unstable, so a brace is a precaution until we see spine guys at Duke in a couple of weeks, and a decision is made re keeping it on or not – it’s not uncomfortable, although it does rather resemble a modified Darth Vader.
So it’s been rather frantic. And as if the above hasn’t been sufficient, we have to move, because Peter will not be able to handle the stairs to our apartment for a long time. I’ve made arrangements (it seems as if that’s a continuing activity) to move temporarily into a condo hotel near Duke, which is very nice, and is acceptable both to the Duke and SNF medical teams. I’ll start looking for a new ‘permanent’ place shortly. Sigh…
Last night and this morning Peter had a fairly serious bout with depression, one of the very few he’s had throughout the nearly 4 year history of cancer. He’s feeling better now, still not completely over it, but the PT and his victory over the machine, helped enormously.
I don’t think I have any messages to impart, other than that we’re going through an especially tough time, and the onion of the disease keeps on revealing new layers, and all we want is to put back a few layers. Well, I’m lousy at analogies and that sort of thing, but you get the picture.
More in a while.
I came across a blog by an oncologist discussing the cost of Abiraterone (a chemo drug which Peter had, but which failed after 4 months). A patient of his had an enormous copay for the drug, something like $2300/month. I’m all too aware of this sort of pricing, but thankfully (in a weird way) Peter is over 65 and therefore subject to Medicare A and B. However, in a bizarre move by the Congress at some point in the past, Medicare does not cover the cost of prescription drugs (no doubt fueled by the pharma lobbies). This has been going on for some years, and there are a series of quite baroque procedures (not to mention expense) for getting adequate drug prescription coverage.
But I digress – what I found out from this blog is that there is something called oral parity. Now I knew from my research that chemo drugs administered through infusion, and therefore done in a clinic or similar, are covered both by Medicare and private insurers, under a reasonable copay situation. An oral parity law has been enacted in 19 states thus far, with quite a few considering such legislation. This means that pill-based chemo drugs (such as the Abiraterone mentioned above, and the Xtandi drug Peter takes) will be treated on the same basis as the infusion-based drugs. Looking at the map of states which enacted legislation, and those which are considering it, it’s interesting (and unfortunately predictable) to note that those states seemingly avoiding the whole issue tend to be the most conservative ones, including our current home state of North Carolina.
However, I’ve joined the discussion group to help promote oral parity nation-wide which is Patients Equal Access Coalition, or EEAC. The blogging oncologist is Dr. Craig Hildreth, and the blog is in cancernetwork.com, for anyone who is interested. By the way, he calls himself the happy oncologist.
So that’s today’s news. And the message here is to read everything. Sure it’s ok to dismiss the vast majority of what’s out there, but occasionally a gem emerges in a the goop. However, this particular blog is in an authoritative site, but I normally have gone right by the happy oncologist.
Meanwhile, we’re very much enjoying a visit from Pam Millar, Peter’s sister, who flew for around 24 hours, with an elapsed time of 34 hours to get here from Port Elizabeth, South Africa. More on the visit in the next post.
It seems there’s an unending amount of learning to do when dealing with a very serious disease. Although we’ve been trying hard to stuff Peter with calories, and he’s more or less maintaining his weight, he’s become quite dehydrated. This is largely because his radiation-induced very sore throat makes it really difficult to swallow. We’ve tried all sorts of things, magic mouthwash, lozenges, painkillers, but nothing has been truly successful.
So yesterday’s visit with the radiation oncologist led to an IV infusion of saline and dextrose. The initial intent of the appointment was to discuss radiation procedures and Peter’s thoughts on the matter. Note: everyone who knows Peter at all will recognize that Peter will always come up with a change, possibly an improvement, a new angle on something, and wants to discuss it – he’s still Peter!
Well, we never did discuss that, as Brian Czito (radonc doc) focused immediately on Peter’s condition, the side effects, how he’s coping, etc. Several hours later, we emerged from Duke after the infusion, and with Peter feeling somewhat better. Brian emphasized that we could return anytime for another infusion in the radonc clinic, and we almost certainly will in the next day or two. And coincidentally, the sore throat is improving. Brian said it would likely do so around the time of our appointment, and more or less on schedule it did!
So here’s the lesson: hydration is so very important. Dehydration can increase fatigue, and generally raise havoc with the body. And someone in Peter’s condition can get dehydrated extremely quickly. We monitor his pulse rate regularly, which is a leading indicator for dehydration, and indeed Peter’s pulse rate has been quite high, and his blood pressure quite low – the body copes in ways which seem strange to a lay person, and possibly to an expert as well I’d bet.
So everything related to Peter’s condition is on a very high alert status. We both watch everything, but sure enough, while we knew Peter was dehydrated, we didn’t think to ask for IV help. Yes, it had been mentioned before, but now it’s in the active arsenal, so to speak. All the docs we’ve seen (and there have been many, including of course Dan George and now Brian Czito has emerged as an important figure) have all spoken out strongly on both the need for Peter’s physical rehabilitation and their belief that he can achieve this, which is enormously encouraging.
I think I need some tools. There are disease issues, side effects issues, weight issues, hydration issues, physical strength issues, and the ever present state of mind issues. The interaction between all these things is extremely complex, needless to say, and I spend a huge amount of time trying to put together the meaning of x pain or x symptom, and every new piece of information adds both to the complexity and also to the possible linking together and further understanding. As I tell all the docs, they’re the medical experts, but I’m the Peter expert. I’m also a very good problem-solver, and will gnaw on a piece of information until I can get it sorted out, if indeed it can be. There are a couple of things I’m gnawing on now, which I’ll report in due course. And, in a true gnawing manner, I’ll badger (!) the docs with my observations and thoughts until they take notice or give me satisfactory information.
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The big trip through cancer 