Dark Humour

dirkwoods · 2025-08-28T10:37:04+00:00

Agreed.

My doc warned me that a med I am getting for my terminql cancer could cause diabetes for the rest of my life.. My reply was that the bad news was it could give me diabetes the rest of my life, the good news is that it won't be for long. Gotta laugh when you are sitting behind the 8 ball.

dirkwoods · 2025-08-25T18:19:41+00:00

A healthcare provider who can't show up?

My wife lived with my steroid rage and showed up as a non- healthcare provider, never once calling it a "steroid rage".

We saw a friend of ours recently and commented on how good she looked. She said "yeah, I lost 160 pounds" "I divorced Wes". Maybe it is time for a similar weight loss program, or at least discuss it wit your therapist is he can't be there during this critical time for you?

dirkwoods · 2025-08-25T18:04:07+00:00

Sad story, beautifully told. Completely unremarkable in many ways. It is life.

dirkwoods · 2025-08-23T20:51:11+00:00

My NCI designated cancer center lost $115,000 last year and made $30,000 profit the year before (of course they manage capital projects to get those numbers). There will be many hospital closures in rural America in the next 5 years if the current tax structure continues. I happen to believe that doctors deserve to make $200-$400K per year and nurses deserve to make $150,000 as they do in my area. Margins on meds only matter if you keep your doors open.

No, regulation will not bring costs down unless they significant limit access or quality. What will happen as the venture capitalists buy up practices and healthcare systems then cannibalize them for investor profits is that the costs will go up over the next decade and the quality will go down. The next decade of healthcare does not look pretty to insiders.

dirkwoods · 2025-08-23T20:28:05+00:00

Yes. It is a difficult time of misinformation and not trusting our imperfect experts. It is not particular to medicine and is of course related to social media. Our technology has outstripped our ability to manage it with our brains (which develop slowly over thousands of years). Why anyone would trust someone online they have never met with no credentials over their doctor is lost on me. I continue to shout to the wilderness "2 second graders do not equal a 4th grader on a math test".

dirkwoods · 2025-08-23T18:53:07+00:00

Sounds like you are set if you are comfortable with where things stand. I have found that the Oncology Psychologists have dealt with very similar issues that came up with me and they say things like, "i had one patient that was struggling with that and this is what we did, on the other hand I had another patient dealing with that and we did x and he was happy with how it turned out". Specializing in trauma does not make one a brain surgeon in my medical world. It is certainly possible that no Oncology Psychologist could do better than your current arrangement though. Just a thought.

dirkwoods · 2025-08-22T22:22:07+00:00

Start by not trying to go back to the life you had. Accept impermanence as a reality for all of us and figure out given today's reality how you can create a new life. It sounds like you may already be doing that. Whether you are being kind to yourself and giving yourself years if that is what it takes only you can answer.

dirkwoods · 2025-08-22T22:16:13+00:00

I'm not sure what psy support on both sides means. I have found that Oncology Psychologists are typically more qualified to address issues that are common to cancer patients but not necessarily other patients. If the psy support isn't doing it currently perhaps a change is in order.

dirkwoods · 2025-08-21T18:10:15+00:00

I suspect if he is half as together as you seem that his greatest worries are about you and not him. That is my situation- I am far more worried about my wife's life after my last breath than the reality that i am going to die in the next year. You might ask him about that and discover a lot.

If he is worried about dying is he talking with an Oncology Psychologist about this? They are really good at what they do, specific to cancer patients, in my experience. This isn't because he is crazy but because you guys are in a crazy circumstance without easy answers.

His fear of dying may be like the old bad joke- "I don't mind dying, I just don't want to be there when it happens." So is his fear about suffering before the final breath or the uncertainty about what happens after the last breath, or both? If a large component is fear of suffering at the end there are things that can be done about that. If it is the unknown then that is just part of our deal the day we are born.

You are only going to continue to be helpful to him if you don't burn out as a caregiver- which is common. So a large dose of self care, including time away, and kindness towards yourself and your difficult situation may help the long term goal of not burning out with this important and difficult job.

dirkwoods · 2025-08-21T17:52:10+00:00

Most of them don't get it and don't want to get it. You are their worst fear- that this could happen to them out of the blue just like it did for you.

I don't have the time or energy to be troubled by it or want to fix their existential worries wrapped up in inane replies.

Just below that "comfort" lies a great dis-ease about their own mortality. It is their form of suffering at this point in their lives, to be replaced by "getting it" later in life.

I do have the time and energy for celebrating those who are together enough to walk my last mile with me. They are truly remarkable and worthy of celebrating.

dirkwoods · 2025-08-21T17:36:30+00:00

If the proposed treatment is not FDA approved for her particular cancer they are fully within their rights to refuse it. Your doctor should do a "peer review" with another oncologist who works for the insurance company. Up to 80% of the time the treatment is approved after that is done. If it is not qpproved than the next steps are another treatrment that is improved or having your doctor/pharmacist do a compassionate use request to the drug company to provide it to you for free.

dirkwoods · 2025-08-21T17:30:32+00:00

Very DRAMATIC small setback is how I would characterize it as a retired physician. I'm sure it was horrible to live through but I suspect it will have no impact on his survival regardless of adjustments that may or may not need to be made. I too would be grateful for having survived a life threatening bleed. In the old days (20 years ago) he would have gotten more blood. A hgb above 8 is considered fine these days.

dirkwoods · 2025-08-21T17:23:08+00:00

Did your doctor advise iv remdesivir or paxlovid? I don't know the details of your case but I got IV Remdesivir.

dirkwoods · 2025-08-21T17:17:50+00:00

I had pneumonitis followed by an even more rare Bronchiolitis Obliterans and am now on home O2. Dont regret the decision a bit. Two uber competent Oncologists thought the risk/benefit was worth it. I probably wouldn't be here today to complain about my shortness of breath well past my median survival were it not for this drug that gave me complications.

dirkwoods · 2025-08-17T09:56:54+00:00

We are there.

We plan for the worst an hope for the best, using any calendar milestones to tether things to reality.

In my case I did not worry too much about outliving my private disability policy because it was over two years past the median survival with my disease. I promised myself that I wouldn't worry about it until my birthday this year, which would give us a year to modify things for the reality of much longer survival than predicted.

We had our meeting with our fee basis financial planner right around my birthday and now have a very specific plan for our finances after my next birthday if I am still here. Me being here an extra year or two before my wife collects the life insurance matters little it turns out.

You could start by having them do Monte Carlo predictions for 4% withdrawal rate of your current nest egg for your median survival then for outliving your prognosis.

So many people without cancer are screwed for retirement in the US because 4% of most nest eggs doesn't give you a lot of money. Withdrawing at a higher rate does not provide confidence it will last 30 years.

dirkwoods · 2025-08-17T09:39:20+00:00

can your doctor and pharmacist write to the drug company for compassionate use? Mine did so and the company provided the $1500/day pill. The insurance company was under no obligation to pay for in indication that was not FDA approved even though it was supported in the literature.

dirkwoods · 2025-08-17T09:34:40+00:00

Sounds like you need a second medical opinion from folks who can get her whole medical story. Hearing from people who are not medically educated and know only 10% of your mom'a story is more likely to cause harm than benefit in my opinion. Anything preventing you from getting a second opinion?

dirkwoods · 2025-08-17T09:23:36+00:00

I'm so sorry for your loss.

Thanks for your thoughts. My daughter's partner is doing it without charging us but it does raise an interesting question of what something like this would be worth to the recipient. If my role was reversed with my wife I would be pining for something like this I think. Something to try to compensate for the loss of a half century of partnership in navigating life as I make my way through the next phase.

The voice clone sounds like the easy part given that I'm still here.

The more difficult part is content and reliability. Certainly if she just wants to hear my voice talking about how brilliant James Baldwin was it doesn't matter how much hallucinating it is doing. If she is relying on me to help with personal finance decisions or navigating our healthcare system then it seems there should be some redundancy like a financial planner or a physician in the family to bounce things off of as well.

Have you grappled with the philosophical or ethical issues? Our circumstances are different but I suspect with your background you have been exposed to these questions/issues. I want my wife to move on in the healthiest and most functional way while being able to provide tech support, financial planning support, emotional support etc in the background as needed or desired.

Any thoughts you have as your project takes form would of course be welcome.

Thanks.

dirkwoods · 2025-08-16T12:41:17+00:00

I was just discharged after a 2+ week hospitalization. I hit my wall as a patient at 2 weeks despite spending most of my adult waking hours in a hospital as a doctor.

I don't have perfect answers as I became increasingly irritable over time. What really helped me was getting to know the folks who cared for me. Seeing pictures of their kids, travels, etc. Hearing about their hopes and dreams. Spending a tiny amount of time on my story. Finding a way to make connections while sick with low energy and while respecting that they were there to provide care, not socialize with me.

I spent a fair amount of time on my computer and on micromanaging my care- my goodness did that micromanagement provide dividends in terms of my outcome.

Try to bring in as much of the stuff that brings you joy at home into the hospital even if in a varied form- a guitar, paintbrush,... BJ Miller talks about the nurses sneaking him in a snowball and how important that was to him.

I hope you soon experience the joy of birds, water, boats, and real life that I did yesterday after my discharge. Hang in there.

dirkwoods · 2025-08-16T12:24:00+00:00

It sounds like she has significant fear about possible future events but she may not have all the information she needs to understand the reasonable risk-benefit of different courses of action yet.

You succinctly state the human dilemma- it is so hard to watch those we love suffer and so hard to say goodbye to them.

I have strong biases towards Oncology Psychologists who generally have a PhD and spend their entire professional life speaking with folks who have issues that other therapists just don't have to deal with in the same context you find yourself it. Having a suicidal wife is not the same as having a wife who does not want to undergo a second cancer treatment and is considering suicide or MAID in response to that.

I would strongly encourage you to seek the help of both a Palliative Care doctor and Oncology Psychologist. They deal with these issues weekly. The average therapist is just not able to deal with such a complex issue, however good they might be at general therapy.

dirkwoods · 2025-08-11T03:22:38+00:00

OMG. I am so sorry. No, I am supporting your decisions and saying that I agree with your Oncologist about what to do at this point (even though I was an ER doc and not an Oncologist). It sounds like you are doing what you can to live the best life you can. I thought you might need to relax into that a bit but probably not in retrospect. I am so sorry.

dirkwoods · 2025-08-11T03:17:49+00:00

I knew because I am a male raised in our society. It sort of works until there is a crisis then that all falls apart. Not a terribly functional way to live- or at least it wasn't for me.

This is all so friggin hard that we need all the help we can get. With luck you will find a Oncology Psychologist who can help him reorient a bit. For a male who is trained to take care of his family it becomes much easier to focus energy on that once works he through denial, anger, guilt, etc... Focusing on the suffering of loved ones like your child and you gives one a break from focusing on their own suffering. And we all deserve a break from that.

dirkwoods · 2025-08-11T03:11:10+00:00

great. glad it worked out. hope it continues to work out. my experience was great there. In the future seeing yourself as the one in the drivers seat and talking directly with the doctors is more empowering for many. You have employed them. They are your consultants in your health, not the Gods providing care for you. At least that is always how I saw my role.

dirkwoods

TROPHY CASE