142 posts categorized "Cancer"

I Am Back and Ready

Seven years, three months, one week, and one day ago, I lost my Dad, Neil, to a Glioblastoma (GBM). My father was a “man’s man” and, although he was able to scare many of our suitors away, if you made it into his inner circle- a place of unconditional love and support- you would find that the only thing bigger than his brawn was his heart. Ronni found this out in the mid-80’s when a fluke run in with this small town man changed both of their lives forever.

My dad was born in the tiny hamlet of Shickshinny, PA. He spent his childhood there and married the love of his life, Donna, who grew-up across the Susquehanna River in Mocanaqua. He raced cars, chewed tobacco, and he loved walking in the woods. He taught seventh grade science at the high school from where he graduated, and raised his children to be able to identify deciduous trees in February. He lived 2 ½ hours away from New York City, or as we called it, The Big Jabłko, but he lived a life as if it were a world away.

When my Dad met Ronni, or Vern as he called her, our family had just entered a time of enlightenment. We had heard of Vern- a jet setting producer for the likes of Barbara Walters and such, who resided in The West Village- and on Thanksgiving Eve, my Dad drove thirty minutes to the nearest bus station to fetch our holiday guest. Our family Thanksgivings consisted of 30-35 people, all who were close family. The fact that Ronni did not run out the door never to be heard from again still amazes me, and from that weekend on, we were family.

I met Ronni as a child, annoyed her through my teen years, dumbfounded her with my absolute stupidity in my twenties, and became her best friend in my thirties. My forties brought an unconditional, omnipresent love that bonded us deep within our souls. We shared lobster in Maine when times were good, and peanut butter and cucumber sandwiches when they were a bit tighter. We paired $400 bottles of wine with Dominos while watching Netflix in her bed. She taught me how to ride the subway and helped me navigate some of the hardest times of my life.

When my Dad was diagnosed with a GBM, my world was rocked. He was my hero, my rock, my sounding board, and the best Dad a kid could ever have imagined. I watched our Mighty Oak slowly lose his strength, and often not be able to recall the words in his everyday life. I began to grieve before he died. I mourned for small losses everyday throughout his fight and really thought I was going to be ready when he died. In the days that followed his death, I was relieved because my Dad was free. Guilt overwhelmed me. How could I feel more at peace with my Dad gone than I did with him here? In talking to Ronni, she helped me see that I had been caring for the emotions of those around me better than I had been taking care of my own. She urged me to treat myself as I would someone who came to our home to pay their respects. Taking care of myself and being selfish was not only alright, but critical for self-preservation.

Fast forward five years from that day… I was teaching, and during a break, I checked my phone. Two missed calls from Veronica Bennett. It was not Sunday- Sunday morning was our standing phone date- yes we called throughout the week to chat, but TWO missed calls. I called and Ronni told me she had pancreatic cancer. A death sentence. There is much that I can share about the time between that phone call and now, and I will on a much more regular basis now… but for the past month and a half, I needed to be selfish. I needed to process a loss that I knew was going to happen. I thought I was ready, but in the end, I was not. I was not done with our relationship in this life. I miss my Friend so very much. I am so sad.

Ronni Bennett, 1941-2020

Yesterday, at 6:28 PM local time, Veronica "Ronni" Bennett passed away. Ronni bravely documented the aging process, with her Last Great Gift being the documentation of her death. We spoke for sometime yesterday, and throughout our conversation, she circled back to you. It was very important to Ronni that this amazing community continue to have a place to come and discuss this amazing journey we are all in together. Your support and love was a gift that Ronni never could have imagined when she started this blog 16 years ago, and she was forever grateful for each and everyone of you.

We all will feel the pain of this loss for a long time to come, and although 30 years her junior and far from a writer, I will continue to make TGB accessible, and comments are always welcome. I will make many mistakes, I am sure, and please forgive my lack of HTML understanding, but I will get there.

I will leave you with knowing that she was ready. Just before she died, she said, "When you get here, it is really nice. I am not afraid." – Autumn


The Busy-ness of Dying

Except for people who are caregivers to an ageing friend or relative (there are many), we don't know much about getting sick in old age and dying – at least, not in the public sphere.

It has been decades since Americans commonly lived in multi-generational households so we don't see the changes, the work, the anxiety, the worry and even the relatively minor but ongoing irritations of keeping an ailing person's body and soul together until time to leave.

In the United States, we keep most of this stuff private, unmentionable, as though it is not fit for discussion in polite company. Even in what is now, arguably, the worst period of time during our lives, the Americans really do insist on behaving like Good Time Charlies about old age and health.

And that doesn't help anything.

I could apply those thoughts to our current political/virus/POTUS situation, but I would rather be personal today. Although it has been building for awhile, I realized recently that I haven't been this busy since I worked full time.

Hardly an hour passes in each day where there is not a requirement to attend to the treatment or maintenance of my diseases. From comments over the years, I know I am not alone in these procedures so feel free to join in below.

It starts when I wake in the early morning. Sometimes it feels like I can't find the energy to go through the morning readiness ritual. I feel weak, sometimes I think my legs are shaky. They are not, but they feel that way. I work through it.

Wandering slowly into the kitchen, I start the water for coffee, count out the first three pills (two for pain before it appears, one related to breathing). Then I set up the nebulizer – 10 minutes of breathing an infusion that gets my bronchial tubes working.

That finished, coffee is ready and I settle in at the computer to check email, news, the day's to-do list. If taking out the trash and going to the mailbox are on the agenda, I remind myself do it following the 2PM nebulizer treatment – I can walk more easily for a short time then.

Sometimes there is a morning phone call with a friend, always welcome. I drink coffee, think about breakfast and sort out the pills related to food and digestion that need to accompany meals.

Sometimes now, I lie down for half an hour after breakfast, using supplemental oxygen while I rest. By then, it is almost 10AM and time for the next nebulizer treatment.

One morning a week, my hospice nurse comes by to consult with how I'm doing, offer suggestions, order medications and generally have a nice visit. Every two weeks, the social worker comes by one morning.

By then I am alert and active enough to think about writing the next blog post. Or, at least, make some notes for it.

Whatever I'm doing at the desk, in the kitchen, with the paraphernalia of my disease maintenance or household chores, I am careful to keep a tidy area around it all because it takes so long and so much of my reduced energy to clean up if I let it go beyond what mess I can make in about 10 minutes.

Sometime in the morning, I check my supplies of medications to see what is getting low. Hospice supplies them now but I need to track my needs for them.

After the 10AM infusion, I'm ready for some serious blog work or household accounting or some other boring but necessary chores of life. As the time ticks by, I'm keeping an eye on the clock for my noon pain pills followed by lunch.

Eating now has its own complications in terms of appetite and, sometimes, pain. If I get off schedule, I'll not eat at all and after a lifetime of fighting the same excess 10 or 15 pounds, I am now in more danger of too much weight loss. I don't think my thighs have been this small since I was 12.

From somewhere around noon until 4PM is my golden time. I mostly feel good, am pain-free, can feel a decent amount of energy flowing and can get a lot of writing or any other kind of non-physical work done. It's also when I take out trash and check the mail – my short walk of the day.

From then on, I'm slow. I might take a nap. Mostly, I lose track of time during these couple of hours. I might walk back to bedroom and then see that 20 minutes have passed when all I did was pick up a book I left there. I never have any idea what happens to that much time.

Six o'clock brings dinner, more pain and other pills, another nebulizer treatment and I am finished for the day.

It strikes me that this is an incredibly boring inventory of one sick-old-woman's daily life - yet there is plenty I have omitted. There is hardly any time left for me to just be.

One of the larger considerations in recent weeks as the daily chores have increased, is wondering when I make time to consider those end-of-life drugs sitting in a cupboard across the room.

When what seems now so long ago that I decided to take that route to my death, I don't believe I understood how difficult it would be to choose the time – I thought I would just know.

Of course, I wasn't nearly as weak and sick then as I am now. I hadn't even considered that I could feel fatigue so deeply as I do sometimes.

Nevertheless, it is the route I have chosen. There is not an option, like my mother had, to just stay in bed until I expire. There is no me to take care of me in that circumstance as I did for her.

All the medical professionals I have talked with about this, all of whom have been present at patients' use of the drugs, tell me they believe each one chose the right time. For several months I have trusted them in this. Right now, today, I am not so sure I will do that well.

Meanwhile, I am so damned busy.

Canada Issues a Medical Exemption for End-of-Life Psylocybin Use

TGB reader Linda Burdick sent this story from Victoria, British Columbia.

After being diagnosed with incurable cancer, Canadian Laurie Brooks found herself living in a world of anxiety, grief and anger, reports Anna J. James in The Capitol. A trauma therapist friend introduced Brooks to “magic mushrooms” or psilocybin.

”Within ten minutes, Brooks felt relief from the weight of her incurable cancer. The stress and depression had lifted. But psilocybin is illegal in Canada under the Controlled Drugs and Substances Act—and has been since 1974.”

(It's up to you but I would read that “ten minutes” part with a grain of salt. Having used magic mushrooms myself for a similar reason, I know it takes longer than that for one's stomach to digest the mushrooms and to feel the effects.)

After her successful use of psilocybin, Brooks worked with a Canadian non-profit organization, TheraPsil, becoming an advocate for the use of the drug in palliative care.

The group helped Brooks, now in remission, petition the Canadian government for an exemption from the law prohibiting the use of psilocybin except in research.

”On August 4, 100 days after submitting the petition, Brooks became one of four Canadians to receive approval from Minister of Health Patty Hajdu to treat end-of-life anxiety with psilocybin.”

That is hardly legalization and it benefits just those four people for now, but it is part of a small-ish trend toward government approval of psilocybin particularly in treatment for end-of-life anxieties.

In July, my U.S. state, Oregon, confirmed that a measure to allow use of psilocybin in a state-regulated environment had qualified to be on the ballot in November.

According to KGW.com, Initiative Petition 34, if passed by voters, will not go into effect for two years, and allows psilocybin to be used in the following manner:

Licenses requirements to provide psilocybin therapy, cultivate psilocybin or own a psilocybin service center

Each therapy recipient goes through a three-step therapy process that includes a screening for risk factors, a supervised therapy administration session and an evaluation afterward to discuss what was learned

Psilocybin can only be taken under supervision at a licensed service center

People cannot leave the center while under the influence of psilocybin

People cannot grow or take psilocybin in their homes

Washington D.C. residents will also be voting on psychedelics in November. Initiative 81, would go much further than Oregon's proposal by decriminalizing psychedelic plants and fungi.

If the measure is passed in D.C., that city will join Denver, Colorado, Santa Cruz, California, and Oakland, California, in recently decriminalizing psychedelic plants and fungi. You can read more about at Washington Post.

Keep in mind that decriminalization is not the same as legalization. Decriminalization removes criminal sanctions but may still impose fines or other penalties. Legalization removes legal prohibitions against using a substance.

There is a growing body of evidence that psilocybin works well at reducing fear and anxiety involved with end of life issues. As explained in the KGW.com story,

”A five-year study conducted by New York University’s medical school, in which 29 cancer patients received a single dose of psilocybin or a placebo and nine psychotherapy sessions, found that psilocybin 'decreased cancer-related existential distress, increased spiritual wellbeing and quality of life, and was associated with improved attitudes towards death.'

“The study also found that more than half a year after treatment 'approximately 60–80% of participants continued with clinically significant reductions in depression or anxiety.'”

That's what I took, a single dose of psilocybin. You can read about that experience here and here.

What is important, I think, is that use of plants with psychedelic qualities are becoming acceptable and legal – however slow governments tend to work on such things.

From time to time I use cannabis to help me sleep longer than the three or four hours I get at night without help. It is legal in Oregon, available to any adult at local dispensaries. The “budmasters” behind the counter I have met all tell me that the majority of their customers are old people who use it for sleep or for various kinds of pain.

If psilocybin can help alleviate anxiety and fears of death as it did for me, I see no reason not to make it available. What do you think?

Is Death With Dignity the Same Thing as Suicide?

Last time on The Alex and Ronni Show, we discussed Oregon's Death with Dignity Act (I prefer the phrase, medical aid in dying or M.A.I.D), and my acquisition of the drugs that will end my life when/if I choose to do so. TGB reader Kate R left this question in the comments:

”I totally understand your whys of controlling when you decide you want to depart. You are fortunate to live in a state that supports this choice. I'm going to throw this in the conversation.

“My husband committed suicide by his own hand after many years of depression etc. I was shocked and not pleasant to witness. How is your choice not considered a form of suicide?”

The short answer is that it is not a “form of suicide”; it IS suicide, condoned and made legal in my case by the state in which I live.

Eight other U.S. states – California, Colorado, Hawaii, Maine, New Jersey, Vermont, Washington state - plus the District of Columbia also have death with dignity laws. In addition, no state law in Montana prohibits a physician from fulfilling a request from a terminally ill, mentally competent patient for medication to end his or her life.

Mostly, states and countries that allow medical aid in dying avoid the word suicide. I have no proof of this but I think they do so (as do I) because certain words are freighted with extra meaning beyond their basic definition, suicide being one of them. So we end up with such phrases as

Death with dignity
Freedom of choice at life's end
Medical aid in dying
Physician assisted dying
Right to die
Self-determined end of suffering

But they all mean suicide – that is, to die by one's own hand. Pains are taken in the words and meaning of the statutes where it is allowed so that the people who acquire the drugs to commit suicide are terminally ill as determined by physicians and are of sound mind.

Additional verbiage in the laws seeks to ensure that no one can be coerced by another person into taking the drugs and my doctor made a point to advise me that in choosing the day to use the medication, I must be physically able to lift the glass to drink from it on my own, without assistance.

A big feature of the medical aid in dying laws in the United States and most other countries is that the patient be terminally ill, usually with fewer than six months to live, according to physicians.

There is a case now in France of a 76-year-old woman who is is not terminally ill campaigning for her right to die just because she wants to.

In 2018, Jacqueline Jencquel, who has been vice president of the pro-assisted suicide organization ADMD (French language site), and a member of the Swiss right-to-die campaign group Exit (French language site), told Vice News:

”What really surprises people is that I'm not dying. In France, to get the right to die, you have to be on your very last legs and screaming in pain.

“We enacted the Léonetti law in 2005. This law was extended in 2016 to allow terminally ill people to be put to sleep with sedatives—to cut short their suffering before death. But it doesn't go far enough. It's a way of not really dealing with the end of life. The idea is to suffer first, then we'll help you bear it until your body just quits.”

Saying that she wanted to see another spring, Ms. Jencquel extended her first self-chosen “exit date” of January 2020 for six more months. Then she extended it again until the end of the year because, she said, she will have a new grandson in November.

“I am not in good health,} she recently told Euronews. “I have osteoporosis, I'm very fragile, and I have a stomach issue. And I know it's not going to get any better”.

“What's this taboo around death? I mean, we're mortal, aren't we? What is an option is the suffering before dying. And I don't really see any purpose and meaning in my life anymore.”

Dr. Vianney Mourman, a palliative care physician at Lariboisière Hospital in Paris, who rejects Jencquel's argument, told Euronews:

“'If she were very sick, and say “I suffer so much and nothing relieves me, by humanity, please help me kill myself.' The speech wouldn't be the same.'

“He insists that only once you've given the way to alleviate the suffering without success you could 'perhaps imagine that assisted suicide could be offered'. But for someone who is not sick and has a future, 'we can't, and we shouldn’t allow it: it's breaking a taboo that puts society at risk,' he reiterates.”

All the above is a wordy response from someone who believes that death with dignity, right to die, physician assisted dying, etc. are just other ways of saying suicide. I don't have trouble with the word but then, I've been reading and thinking about it for many years before I was in a position to consider it for myself.

Now I'm curious to read what you have to say.

If you are looking for more information about assisted suicide, here are three good organizations:

Death With Dignity
Right to Die Europe

Answers to Your Questions About Medical Aid in Dying Drugs

There was a lot of interest in last week's post about the medical-aid-in-dying (M.A.I.D.) drugs that were delivered to me and quite a few questions so I am going to answer them as best I can in this blog post.

If you have additional questions, please leave them in the comments below and I will check throughout the day and respond in the comments.

From Wendl:
”I must add that the first thing I thought when I saw the photo was, 'Uh-oh, how difficult will these caps be to take off when it's time?'”

Ronni: Exactly, Wendl. When the pharmacist asked me the question about child-proof or easy-open caps, I had a sudden vision of myself ready to go, weak, tired or maybe in terrible pain struggling to get the caps off - maybe dropping a bottle in the process and spilling the contents.

A related issue was that I might forget where I stored them. It happens to me all the time in my dotage that I put something in a place I think I am certain to recall and then can't find it later. So I've written down the location of the M.A.I.D. drugs in a notebook I use every day and have told two people where they are.

From Bonnie:
"Just looking at those bottles is scary to me. I would have thought, one, maybe two, but good grief what is in that large bottle? Something to make a cocktail?”

And from Irma:
“4 bottles?? Is there a certain order to it?

Ronni: Yes, there is an order to taking the drugs. The first two are anti-nausea drugs, the others are the M.A.I.D. drugs all taken in a certain sequence with a specific amount of time between each that adds up to a total of an hour.

The powders are mixed with water or apple juice or whatever liquid I choose.

Oregon law requires that I must do the mixing personally and be able to drink the mix without assistance.

From Kate R:
”Will someone with hospice be with you assuming there is a sequence in taking the drugs? Does this insure a quick death? You've been very frank in sharing your journey Ronnie, so my questions are also very frankly asked.”

From Mary Smythe:
”Can you proceed to just take the drugs (I assume the instructions are there), or do the three people you refer to have to be present as witnesses?”

Ronni: There is no requirement that anyone be with me when I take the drugs but as I noted in the original post about the M.A.I.D. drugs, I do want three people with me – my good friend, my palliative care provider and, probably, my hospice nurse.

According to my doctor and the pharmacist, after drinking the final mixture (the big bottle), I will fall asleep within a couple of minutes. In fact, it is so quick my doctor advised me to be sure I have said my good-byes before I drink the last dose. Death usually takes place a few minutes to an hour later.

From Yellowstone:
”Question now is, what degree of pain will allow you to 'pull the trigger?' Who will be there to decide for you when you can't? What suffering or remorse will we all have once we have lost you?

Ronni: I can't answer your third question, Yellowstone, but I surely hope no TGB readers will suffer or feel remorse. You have no reason for that. I even hope you won't be too sad. Death comes to all of us and we here at TGB have already had a long goodbye.

To your second question, the entire point of the medical-aid-in-dying law is that the patient and only the patient decides when the time is right to take the drugs. In fact, a physician had to certify that I am of sound mind before they could be dispensed. And the reason only I can mix the drugs with liquid and lift the glass to my mouth on my own is to help ensure that I have not been coerced.

Your first question, how will I know when the time is right, is important. I have discussed that with two doctors and a nurse all of whom have been present at patients' deaths by this means.

Each of them have told me that I will know. All of them said that with each person whose death they attended, they believe the patient chose the time well.

I don't believe the timing is about pain necessarily. It might be that I can no longer care for myself, am bed-ridden or can no longer do the things I enjoy like writing this blog.

I'm just going to trust that like all the patients they discussed with me, I too will know when the time has come.

Many commenters on last week's post mentioned my willingness to share what I'm going through. I made that choice soon after diagnosed in 2017 not quite sure, then, that it was the right thing to do.

But now I think it is important and that I have been able to contribute to the conversation around cancer, other ailments of old age and the inevitable end we all face.

That's not common – the conversation - at least not in the United States. Many people refuse to discuss death and dying so that when they are confronted with it – their own or a loved one's – they have no knowledge or understanding or even, I have noticed sometimes, a place to start.

Maybe these pages, ongoing for as long as possible, will help in that regard.

Nine states – California, Colorado, Hawaii, Montana, Maine, New Jersey, Oregon, Vermont, Washington state - and the District of Columbia allow medical aid in dying.

You can find local information by searching “death with dignity” and a state's name. Compassion and Choices is an excellent organization whose website is packed with good information about the subject.

From Tim Hay:
”How can we Thank You? We cannot.”

Ronni: You are right, Tim, you cannot thank me and there is no need. I get as much out of reader comments here as you do so things go both ways. What you can do is continue the conversation elsewhere when it is appropriate.

We need to make death and dying part of living, to not let it continue to be a secret. Medical aid in dying is not for everyone but it should be available to everyone which seems to slowly be happening in the United States.

Keep the conversation going.

Cancer Cures? Do Not Presume

In the past, I've written about fake cancer cures and it is time now to do it again. Except. EXCEPT, this one is not fake. It is a real treatment for pancreatic cancer that is still in development.

In the past few weeks, four or five emails have arrived telling me I should look into this treatment.

It is no surprise that these messages have arrived now. In the same time period there have been several news stories about Jeopardy! host, Alex Trebek, former U.S. Senate Majority Leader, Harry Reid, and their treatment with the drug, Abraxane.

As Michele R. Berman, MD and Mark S. Boguski, MD, PhD wrote at Medpage Today on 28 July 2020,

”Reid was diagnosed with pancreatic cancer in May 2018. He underwent surgery at Johns Hopkins University, followed by chemotherapy and radiation treatments. However, his cancer worsened.

“Fearing he was near death, he got in touch with Patrick Soon-Shiong, MBBCh, inventor of the protein-bound paclitaxel suspension sold as Abraxane. Soon-Shiong was working on a combination treatment that he refers to as a 'triangle offense' for refractory metastatic cancers such as breast, lung, and pancreas.

“Reid became one of four patients in his compassionate use program. Reid traveled from his home near Las Vegas to Soon-Shiong's office in Los Angeles.

“After six months of treatment, no evidence of cancer was found on Reid's scans. A June 2020 article in the Washington Post confirms that Reid is still in remission, nearly two years after his diagnosis.

“Trebek also seems to be showing improvement on the regimen.”

Patrick Soon-Shiong is an intriguing man. The short version from Wikipedia tells us he was born 29 July 1952,

”...is a South African-American transplant surgeon, billionaire businessman, bioscientist, and media proprietor. He is the inventor of the drug Abraxane, which became known for its efficacy against lung, breast, and pancreatic cancer.

“Soon-Shiong is the founder of NantWorks, a network of healthcare, biotech, and artificial intelligence startups; an adjunct professor of surgery and executive director of the Wireless Health Institute at the University of California, Los Angeles; and a visiting professor at Imperial College London and Dartmouth College.

“Soon-Shiong has published more than 100 scientific papers and has more than 230 issued patents worldwide on advancements spanning numerous fields in technology and medicine.

Oh, wait. In his spare time he is the owner and executive chairman of The Los Angeles Times and The San Diego Union-Tribune.

Soon-Shiong's biography isn't really important to what I'm here to say today but I have included this brief excerpt because I didn't expect something so interesting when I was tracking down the information I needed about Reid's and Trebek's pancreatic cancer treatment.

What I really came here to say is that with the arrival of each email telling me I should look into treating my pancreatic cancer with Abraxane, I became angrier and like so many other things in my life, I suspect I'm not alone in my resentment of the intrusion and the assumption I would run right out and get me some.

Just the word, cancer, is fraught – at least in the United States – so much so that when I was a young woman, it was only whispered when a friend or relative was diagnosed. No one said it aloud.

We have gotten away from that in recent years as a few cancers have become treatable or curable, but it is still the number two killer in the U.S. (after heart disease) and is 23.1 percent of all deaths.

This disease doesn't fool around.

Although I am prepared to think that those people who sent the news stories meant well, they have no idea about my pancreatic cancer or, apparently, cancer in general. They don't know that I also have peritoneal cancer, lung cancer and probably a few others by now - it has been on the move in my body at least since early this year.

COPD, diagnosed more than a year ago, throws another complication into the mix. My doctors undoubtedly know about the trials with Abraxane, but no oncologists like telling patients there are no more treatments available and they don't do it on whim.

We all want to live and to do it for as long as possible so it is cruel for know-nothing strangers to forward links to stories based only, as far as I could tell, on the fact that they have the word “pancreatic” in them.

I have worked long and hard over the past three-plus years to come to terms with my cancer and where it is leading. Most of the time I am doing well at that but it is a delicate balance.

Even someone like me who takes pains to always concentrate on what is real and true can, for a moment, be sidetracked into a fairy tale for awhile, and then must claw her way back to sanity.

Did any of the people who sent those emails bother to read the part of those stories explaining that ONLY FOUR PEOPLE are in the COMPASSIONATE USE TRIAL? Did any of them bother to see if those two celebrities have COPD and two other kinds of cancer?

Maybe Abraxane will turn out to be a successful cancer treatment, something new that will give many patients many more years than most can expect now. God, I hope so.

But would you take an unproven COVID-19 vaccine that only four people have been given? I didn't think so.

It's a better idea to help a friend or relative with cancer get through the activities of daily life than tantalize them with a false hope.

My Medical Aid in Dying Drugs

It could not have been a more fitting time for the delivery. My palliative care provider and I were on a video call when they arrived via courier this morning (Tuesday): the medical aid in dying (M.A.I.D.) drugs.

My journey to receipt of this box of lethal drugs began in earnest in May when I spoke via Zoom with a physician at the medical center where I had been treated for cancer and COPD for the past three years. Our conversation began the legal process that culminated in that delivery.

So here they are and it is no small thing to live next to this box of certain death. Not that I would take the drugs on a whim or just because I'm having a bad day. That's not who I am.

But I suspect that more often now I will take up the questions that have both buoyed and bedeviled me from time to time and even, in a couple of cases, made me laugh:

Will I have breakfast on the last morning? If so, how will I choose? Cheerios? Scrambled eggs? Maybe just a muffin with jam? Should I wash the dishes or leave them for someone else?

And what does one wear to one's own death, especially when you know you are dressing for the final time? To whom should I look for inspiration? Anne Boleyn? Marie Antoinette? Lady Jane Grey?

Certainly not a convicted American woman in orange prison garb.

People will be here, less than a handful – three seems right. Should I arrange snacks? Wine? At least some wine, I think.

Do you find this morbid? I don't, and it's not like I control the thoughts that pop into my head. There are bigger, more important issues but these will do for the time being.

Every day now I can tell that my life is waning. There are good days and bad. Sunday night I slept no more than two hours and lost most of Monday to fatigue.

Even with a full night's sleep, I tire so easily that my productive time has been reduced to about six or eight hours.

Quite a lot of those hours is taken up with with medical activities - pills and inhalers at certain times, oxygen, nebulizer, managing refills, telephone calls and home visits with the hospice people.

Not that I am complaining. These and other medical professionals prolonged my life way beyond the year expected when I was first diagnosed, and the majority of it was much easier than now.

I have been with people during the last months of their lives and so far I experience fewer difficulties than they did. And don't think I'm not grateful for both the extra time and the terrific medical people who find ways to smooth my way as much as possible.

Because I really, really like being alive.

My job now is to find a way to make peace with dying. I've come a long way toward that goal in the last three years but the arrival of the drugs puts a whole new reality to it.

Until that box was in my hands, M.A.I.D. drugs were mostly theoretical. Now they are fact. In my home. There for my use. Or not. There is no rule saying I must take them. But I suspect the only reason I will not is if I die in my sleep or get hit by a truck.

I thought you might like to see what the drugs look like. Quite ordinary, don't you think? Until you remind yourself what they are for.


And Now, Hospice

As I mentioned a few blog posts ago, you know your time on Earth is winding down when the doctor says you are now eligible for hospice care. He or she makes that determination when your disease is no longer responding to medical attempts to cure it or slow its progress.

(Palliative care includes much of the same comfort care as hospice but also includes continued curative care.)

As of last Friday, I am officially in hospice which consists of an amazingly wide range of care. I will get to that but first, let's cover the most basic nuts-and-bolts questions:

  1. The goal of hospice is to support the highest quality of life possible for whatever time remains.

  2. Hospice care is most commonly provided at the patient's home but is also available at hospitals, nursing homes, assisted living centers and dedicated hospice facilities.

  3. In the United States, people covered by Medicare can receive hospice care if the physician thinks the patient has less than six months to live. Sometimes old people fool the doctors and live longer. Hospice can usually be re-certified for another six months. And another and...

  4. Hospice is generally paid for via Medicare, Medicaid, the U.S. Department of Veterans Affairs and private insurance. Hospice programs differ, but many offer care based on need rather than ability to pay.

I had expected to go to the hospice offices for the introduction to their services, but no. The nurse came to me as will all hospice providers. For the past couple of months I tire more quickly and easily than before so this was a welcome surprise.

We spent the first couple of hours going through the explanatory binder that is my guide to the service and my care. I have a team now. A large team. A registered nurse who is also my case manager; a physician; an aide who is also a certified nursing assistant, can help with light housekeeping, help with laundry and such other tasks as become necessary, and regularly check my vitals and other indicators.

There are also a medical social worker to help with a wide range of personal and practical issues; a non-affiliated spiritual care counselor; volunteers who can provide companionship and various sorts of non-medical help.

There are more but those give you an idea of how comprehensive this hospice is. The nurse made it clear that all of their services are tailored to my specific needs and desires.

But wait. There is even more I would not have thought of. The hospice now takes care of most of my medications, delivered to my door. In my case, half are paid for by hospice now – they buy in bulk with attendant discounts, the nurse explained.

Others are paid for by my Medicare Part D coverage or by me but almost all are delivered on a regular schedule by hospice.

They also supply all needed medical equipment. Recall that it was Friday I met with the nurse for the first time. On Saturday, my new oxygen concentrator was delivered, hospice arranged for the previous one to be picked up next week by that provider, and the delivery person moved the old concentrator and big emergency tanks to a space near the front door so that I wouldn't need to tackle that. (They're heavy.)

I did nothing but stand around and open the door for the delivery man.

This taking over of the arrangements for drugs, oxygen pickup and delivery, and whatever else becomes necessary in the future is a relief to me. In the past two or three months or so, it has become more difficult for me to organize all the little things as their numbers increase. I manage to get them done but it takes a lot of effort, not to mention the annoyances when things go wrong which tire me.

By the way, my new difficulty in organization affects this blog too. You may have noticed that recently there are fewer items in Saturday's Interesting Stuff. That's because over all these years of doing it, I have probably viewed or read at least a dozen videos or stories for each item I publish.

But I'm slower now, I wear out more easily and have trouble keeping track of them – mostly due to a late-age distraction problem. Hence, fewer items on Saturdays.

Getting back to hospice, that binder the nurse left with me has sections on end-of-life legal documents, lists of best-practices in self-care, charts to track medications, home safety tips, a terrific daily journal where I can note emotional well-being, pain level, body responses, etc.

It's not that I need all these things necessarily or yet but they are there when I want to check something, they are smart and they are valuable.

I'm writing most of this on Saturday afternoon. That oxygen delivery man arrived on time, was friendly, made sure I know how to use the equipment and we had a nice time chatting too.

Later in the day, a different nurse from Friday telephoned to see how I am, whether I needed anything and to give me the name of my nurse/case manager who will visit today, Monday.

In the evening on Saturday, the emergency drug kit was delivered. This is kept in the refrigerator so it is immediately available if I have telephoned with an emergency and can help until the appropriate caregiver arrives.

What all of these people did – the nurse who enrolled me on Friday, the oxygen delivery man, the nurse who telephoned with some information I needed, the drug kit delivery person - was repeatedly remind me that if I need anything, from a serious medical problem to just any old question, to call them.

They are available 24/7 and there is always a real, live person, a registered nurse, to answer the phone.

As much as I appreciate every bit of this, it isn't easy for a woman who has always done everything for herself by herself. Unless I am bleeding profusely, I have always thought of it as an imposition on the other person to ask for help. Just recently, an old friend in New York City gave me a kindly lecture on the fact that she and I share that trait and now I need to let it go.

In just these three days, I already feel a relief knowing there are people who can help me with so much and I seem to be going along with them although I'm not completely comfortable yet.

But I'm getting there. Geez, I guess if you live long enough you learn all sorts of new things.

I don't know if this is an exceptional hospice or if all hospice care is as comprehensive and professional and comforting as this one but, as with the doctors and nurses who cared for me during the past three years, I seem to have landed in the best possible place for these last few miles of my journey.

What I do know for sure is that I have never heard about hospice from people who were familiar with it - family members, caregivers and a couple of patients - in anything but superlative terms.

If you have experience with hospice, do let us know about it in the comments below.

When You Stop Chasing the Wind

Saturday was the third anniversary of my Whipple surgery, that 12-plus-hours-long procedure available to about 20 percent pancreatic cancer patients. The procedure involves the removal of part of the pancreas, the entire gall bladder, the duodenum, a portion of the stomach along with a few other bits and pieces.

The five-year survival rate after the Whipple is 20 to 25 percent. Given that the five-year survival rate for all pancreatic cancer patients is under 10 percent, I have been living on golden time.

(I've sometimes wondered why the medical community chose five years for measuring survival rates. Three years with such a dire disease seems pretty good to me.)

The odd thing is that I don't recall noticing the date on the first and second anniversaries. Surely I must have made note of them but who knows. I've discovered during this journey that my mind sometimes has a mind of its own.

On the day I was given my diagnosis, I had no trouble deciding I would not pursue what are politely called “alternative cancer treatments” but should be labeled quackery. (See this report on a 2019 Yale Cancer Center study of alternative cancer treatments.)

My reasoning then was (and still is) that the doctors and nurses who have been treating cancer for years know a whole lot more than I do about what works and what doesn't and that if there were a miracle cure, we would all know about it.

So I put myself in hands of the medical people, followed their instructions carefully and here I am these three years later.

What is far less straightforward and for which there are no doctors and nurses to help, is the question of how to live with a deadly disease day in and day out for whatever time is granted. Shouldn't something change?

For nearly six months after the Whipple I was in recovery mode with energy and physical capabilities severely limited. Without putting a whole lot of thought to it during that time, I continued to write this blog - sitting at a computer doesn't impinge much on one's body – as I gradually regained my strength.

The doctors and particularly the nurses were good at explaining chemotherapy side effects when that treatment was started and except for two or three days after an infusion, life was close to what it had been before cancer (and in 2019, COPD) intruded.

It was then that I began thinking more earnestly about whether I was spending my time in the best possible way. Generally, I've settled for continuing to do the simple things I've attended to each day since I was first made aware of the cancer.

Still, death seems to be such a monumental event that it should require a proportional response. I'm not saying that's true, just that it feels that way sometimes and the intrusion of that thought interrupts the comfort of my routine.

Neurosurgeon Paul Kalanithi came close to saying what I think I am experiencing – or, beginning to experience - in the last entry of the journal he wrote which was published after his 2016 death as When Breath Becomes Air:

”Everyone succumbs to finitude,” he wrote. “I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past.

“The future, instead of the ladder toward goals in life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.”

Since I'm still asking the question now and then, I haven't reached the state of being-here-now that Kalanithi describes. But I think he's right and I also think that if I'd just leave myself alone, I'm heading in that direction and doing just fine.

What It's Like to be Dying: Take Two

Seven months ago, almost to the day, I wrote a blog post titled, What It's Like to Be Dying:

”You could say at this point that death and I are dating,” I wrote then. “I think we've made it to the holding hands stage. We're open to each other.”

That feels true to me for that moment in time. It's different now. What has changed is that doctors have advised me that I have fewer than six months left and since March, I have been living with body pains that while not of the screeching variety, require over-the-counter medication to get me through the day.

I know, we old people who are dying of this or that are supposed to be stoic about it and in general, people would be happier if we didn't remind them of what we are going through, what the outcome will be.

Well, bugger that.

I have always used writing to figure out what I think or believe and at this stage, there is a diminishing number of productive hours in a day. So here we are – an exercise in working out my thoughts and a blog post, all in one.

If you don't already know this, let me be the first to tell you: dying people – either me or any of those whose words about their dying I have read – have no grand insights to pass on to the rest of us. It's not like dying people can peek over the edge of the abyss and describe what's there.

When I can think dispassionately about dying, I understand that it is a law of nature. No one, no living thing escapes.

For many years, I have watched spring lilacs begin to wilt so beautifully it could break your heart, then droop and die – just as beautifully. Tulips and daffodils too, in their time. At the end of his life, my cat Ollie withdrew to a cupboard in the dining room hutch. He chose it on his own; all I did was supply a soft, warm blanket for him to lie on.

Sometime soon now it will be my turn. I'm guessing at this point that I am in the wilting stage. Dying is my daily companion.

It is almost subconscious that I keep an eye on myself, alert to new physical symptoms but more importantly, checking for new thoughts and feelings, wondering if perhaps as time grows shorter that I will find acceptance and (dare I hope?) even joy in letting go.

Two or three times a week, I am caught unaware, suddenly so terribly sad at the prospect of leaving. Life here has been good. Sure, there were difficult times although I see recently how I overplayed some of them to myself. But we do the best we can at the time.

Some days now I'm angry, shaking a metaphorical fist at the universe. I'm fortunate that I've never been a “why me” kind of person but I have a lot of “why now” inside me. Just as the world faces several simultaneous catastrophes like nothing else in my lifetime, I'm expected to go? Now? Really?

Adding them up, there are the physical difficulties, profound sadness, anger – and add in powerlessness.

I have no weapons against the inevitable except my own fortitude (unreliable, these days) and Oregon's Death With Dignity Law. I have always been in favor of it but only in theory. Now it's real and I will soon write a blog post about that.

But for the time being, daily life goes on and the larger amount of it is good – comfortable, interesting, even joyful. Just not every day.

I like living even with the restrictions of my age and health, and our stay-at-home life due to COVID-19. You could say that at this point death and I have had our first few kisses and are moving forward even if it is in fits and starts.

Daily Life When Time is Short

The carpeting in this apartment had needed replacing for awhile. I had been working up to getting it done when I was diagnosed with pancreatic cancer in 2017. Because I did not expect to live more than a year, I couldn't see any good reason to spend a moment of that time or money on carpeting.

Three years later now, they say I'm eligible for hospice (a euphemism for you have fewer than six months left) and however shabby it looks, I really do not care a whit about new carpeting.

Priorities change pretty quickly when the doctors say you don't have long to live.

Some people in my predicament make bucket lists. Two people have even asked me (in jest, I hope, but I can't be sure) if I've started working on mine. Certainly not. And I have always disliked the idea so much I might never forgive screenwriter Justin Zackham for giving us that ubiquitous phrase.

Instead and without putting much thought to it, I simplify daily life. Or, perhaps what I mean is that I have followed new inclinations as they have appeared and continue them if they serve me well enough.

A week or so ago, I was enjoying how comfortable sweat pants are and wondered why I have only one pair. I could use a couple more in different colors, I thought. Then I remembered: Oh, right. I won't be here a whole lot longer so what's the point.

Except when I change the linen, I don't make the bed anymore. You would be surprised how exhausting that is with severe COPD so I skip it now. I don't like seeing an unmade bed when I walk into the room but it's an easy tradeoff to losing my breath and heaving for air.

During my first two or three television jobs on local morning shows in New York City in the 1970s, I was usually the politics and cooking producer. I got to work with such luminaries of the era's culinary world as Julia Child when she was a guest, Craig Claiborne, James Beard once, Burt Wolf and others. I learned a lot from them and enjoyed cooking ever after.

Until now. Not long ago, my interest just dropped away.

It pains me to admit this but after a lot of trial and error and thrown-out food, I rely on the only two frozen meals from the supermarket that I consider edible. They are necessary some evenings when I'm too tired for the effort involved to cook even the simplest dinner.

At this point, I don't worry about healthy food or balanced meals. I'm concerned about the number of calories to keep up my weight and I don't care where they come from. Ice cream plays large part now that the weather is warming up.

Occasionally I use food delivery but it's a habit I never developed BC (before Cancer, COPD, Coronavirus – take your pick) and have not been able to work up an interest now.

As I've discussed here before, until my inclinations lean otherwise, I will continue to write this blog and even though I appear to be slower at it than in the past, it doesn't fill even my much shortened days.

It's not that there is a scarcity of things to do. There is a lot of information to pull together so my affairs are not in too much disarray when I die. I'm not eager for that work, but it needs to be done.

There are books to read, a dozen or more as yet unopened ones, plus the old favorites I would like to at least dip into again if not entirely re-read. But I haven't worked out how to choose. I dither - while time slips away.

There are also the shelves and shelves and shelves of philosophers and other kinds of thinkers, a lifetime's effort to find answers for the big questions. Maybe there are ideas there that would mean something different at age 79 and on the verge of dying than in the prime of life at 20 or 30 or 40. How to choose? Don't look to me for an answer.

A larger number of TGB readers than I would have guessed have asked about making this blog into a book. Just this week, Millie Garfield's son, Steve, emailed with information on how to easily do that online. It's a good idea that I appreciate but I doubt I will find the energy. The smallest things, these days, take more effort than I can muster.

Here are just a few things that make me grateful to be this old and unwell in the 21st century and not the 19th:

Washers and dryers
Stoves and refrigerators
Indoor running hot and cold water
Indoor toilets
Central heating and air conditioning

Think of how hard everyday life would be without them. I never appreciated until now how exhausting getting through each day must have been throughout history until a hundred or so years ago. No wonder people generally died younger than we do.

There must be others of you reading this who are going through similar changes.

TGB Readers and My Youthful Dream

The topics of blog posts here have always followed from my own current interests about ageing. Sometimes a checklist on how to avoid falling, for example, a complaint about misguided politicians threatening Medicare and Social Security or, starting three years ago, what it's like to live with a terminal disease.

Now, I've read your many wonderful responses to Wednesday's post about living with the new-ish knowledge that the end of my earthly journey approaches.

Your kindness about this journal overwhelms me. Modesty leads me to dismiss you who comment here as giving me way too much credit. But. But. There is something else now: you, your attention and your responses have fulfilled a lifelong dream.

Let me explain.

While reading your comments on Wednesday's post (along with others in the near past), I recalled a time back in my teen years when I was hanging out alone in my bedroom one day. Probably I was 15 or 16 years old, getting toward the end of high school, and I was thinking about what I wanted to do with my life.

Doctor, lawyer, Indian chief? Actually, in the mid-1950s, there was not much for a girl to aspire to be except nurse, teacher, office worker and, of course, mother. None excited me. The only thing I actually wanted was to do something that made a positive difference in the world.

But what? I had no idea how I could do that. I continued thinking about it, looking for inspiration that never materialized. And when the thought occasionally popped up during adulthood, I still didn't know. Charitable giving isn't what I ever had in mind about this goal.

After graduation, there was a single imperative, to support myself. One thing led to another and after a few years of going-nowhere office jobs, I ended up with a long and varied media career – radio, television, internet. It was always an interesting way to pay the bills but I never confused it with making a difference in the world.

When paid employment came to an end in 2004, I had already begun this blog to record what I was learning from my spare-time, personal research into old age.

Back then, nearly everything written about it was negative. Getting old was mostly made out to be a fate worse than death and one was urged to do everything possible to avoid it or spend a fortune trying to look younger than we were.

For a long time, I was pretty much alone in the blogosphere – or anywhere else - trying to explain how foolish and life-defeating it is to spend up to a third of one's life disliking, even hating the number of one's years.

(That's no longer so. There are encouraging signs of individuals and people who are now called influencers taking a more positive view of age. Which is not to say that there isn't still too much television and internet advertising about how to look young forever. But it is changing. Slowly.)

Reading your comments Wednesday and again on Thursday, I had a revelation. I realized that I need to drop the phony modesty I have harbored through these 16 years and accept that the many people saying similar things about what they take away from this blog must be true.

Listen to just a few of them:

“You’ve inspired me to live fully, absorb losses, treasure surprises, and fume with passion.” (Paula)

“You inspire us to carry on with dignity no matter what misfortune may befall us.” (Ruth Marchese)

“[Y]ou helped me find an approach to aging.” (Mary Jamison)

“YOU are definitely having an impact and a very positive one!” (Rebecca Ann Magalhaes)

“This has helped me in giving workshops and also in living my own truth...” (wisewebwoman)

“Each of us carries something we learned from you, and we will keep sharing that with others.” (Wendl Kornfeld)

“A small plea. I hope your words of wisdom, as also peoples' comments, remain available for solace.” (Mary S)

Yesterday, I decided to believe you all (why would you bother to write such things if you did not believe them?) and in that moment, realized that here in old age, I have finally fulfilled my teenage dream.

I am awed and pleased that you find inspiration in my writings. I don't plan it that way, you know. Before cancer and COPD, I was exploring old age and passing on what I learned.

These past three years (Three years? It has gone by in a flash.), I have written about facing a terminal illness to find out what I think and how I feel in this predicament. In the process I find now that it has been important to you.

(Oh my god, is this my Sally Field moment? Oh well.)

I am thrilled. And weepy. Without you, I would never have understood that you, all of you, made my youthful dream come true. What an extraordinary gift. I am humbled and thank you with all my heart.

* * *

Now a couple of related housekeeping items.

In answer to Mary S's “plea” above. A few months after I was diagnosed, I asked the people at Typepad, the internet company that hosts this blog, what it would cost to purchase five years of hosting so it will be here for at least that long after I die.

They responded immediately, making my account free. They have always been an excellent host, hardly any down time in more than 16 years and excellent customer support via email – usually within an hour or two.

Also. On Wednesday several commenters sounded a bit like they expected TGB to end soon, something I interpreted to be within weeks or a couple of months.

Of course, I have no idea how long I will be here and I do not know how the course of the disease will affect me either physically or emotionally. But for the foreseeable future, I will publish here as usual.

That might seem odd to some – to keep scribbling away while facing the great unknown. But for 16 years, TimeGoesBy has given form and focus to my days. That is still true. So I will keep writing it for as long I can. It's what I do.

Winding Down a Life (or Not) in a Troubled Time

During the president's repugnant Bible photo op Monday evening, it struck me that I will not see the outcome of the extraordinary time we are living in.

They tell me I haven't long to live - “they” being the doctors. But even without the CT scan a couple of months ago, I knew that.

Not counting the pain during recovery from my Whipple surgery in 2017, which was significant, I had no pain until early March this year. Now it is an infrequent good day when random body pains don't intrude.

Mostly, it is the low-level kind of constant pain that grinds down one's energy and mind accompanied, in my case, by the darkest kind of thoughts. To counteract, I use over-the-counter pain killers liberally. They work (if you don't count the two hours it takes for them to kick in), and as to dosage warnings – oh, please. What does it matter now?

Also, my appetite is diminishing. I force myself to eat as much as possible to prevent frailty and it's not easy overcoming the urge to puke halfway through a meal.

Right now, I'm down two pounds from this time last month. (Do you know how hard I had to work at dieting most of my life to lose two pounds?)

Cancer and COPD together are robbing me of energy. I tire so easily that I sometimes need to nap in the afternoon, a time when I am done for the day doing anything that involves effort from body and mind.

Even reading is difficult later in the day. I understand each word but my focus is so weak I lose the thread of paragraphs and even sentences before I get to the end.

Due to my doubly damaged lungs – COPD and cancer – I'm fairly well freaked about COVID-19 so I'm overly careful about distancing, masks and disinfecting anything I bring into the house. Would that other supermarket shoppers cared as much.

It all sounds grim, doesn't it. But it's not. Discounting bleak thoughts when I haven't taken pain pills soon enough, I'm not unhappy and nowhere near miserable.

I'm adapting, as the diseases make necessary, to different living arrangements and I think that generally, most of us are like that. We make do quite well much of the time when circumstances require it.

You may recall that when I was first told I had pancreatic cancer three years ago, I immediately gave up my daily workout, having hated it for many years. Well, I'm back at it.

Those amazing nurses at pulmonary rehab showed me how exercise helps me breathe and I certainly know they're right because now, whenever I skip a day, I pay for it heaving for air if I move faster than a sickly old woman ought.

Last week, I was reminded of some sage advice from Darlene Costner when I quoted her in her birthday blog post about cutting back on housekeeping:

“I no longer care if my house is spotless,” she wrote...”I am aware that I am unable to do the hard work necessary. I shove it onto my list of things that I won’t worry about. Now I am more like Phyllis Diller who joked, 'I clean my house twice a year whether it needs it or not.'”

Me too, now.

The virus has made huge changes in all our lives. And now, following the death of a black man at the hands of white police, there is widespread civil unrest exacerbated by a ignorant, little boy president and his sycophantic, West Wing enablers.

Something big is happening in the United States. We already knew there would be no going back whenever the virus is contained. Now, whatever that new way of being, of living will be complicated by this eruption of often violent clashes and the divisions they are causing.

During the late 1960s and early 1970s, I took part in the civil rights and anti-Vietnam War protests and marches. My health doesn't allow participation this time, but I sure do want to see the eventual outcome, and what follows from that.

This time I won't and I am sorry about that. None of the fear, anger and disruption we are seeing now can be resolved in a few months or even years.

When I cared for my mother during her last several months and talked to my great Aunt Edith every week during the last two years of her life, I watched both of them, little-by-little, lose interest in and let go of the world and its events.

Ever since then, I have hoped their gradual withdrawal is a normal development as death approaches because I don't want to die feeling like I missed the last reel of the film.

As much as I yearn for this disinterest as my days dwindle down, for now I am still very much of this world, following events as closely as any previous time in my life. Curious, curious, curious and full of the can't waits to see how it turns out.

So, I choose to keep going for as long and as fully as I can or want in the time that remains. I choose to rise in the morning, be present each day, be kind to others and especially, to be as honest with myself - and with you in these pages – as I am capable.

Settling Into My End Days – Or Die Trying

(Sorry about that headline; I couldn't resist.)

When the medical people say you are now eligible for hospice and for medical aid in dying (MAID), you know the end of your time on Earth is nigh.

Not that I haven't known of that outcome for these past three years, but when those two services are on offer, any wishful thinking one might have indulged in is wiped away.

A large majority of pancreatic cancer patients – nearly 90 percent - die within a year of diagnosis. With the help of my excellent doctors and nurses, the universe granted me two additional years of golden time most of which, if you don't count chemotherapy side effects, was not too much different from life before cancer.

It got to be almost funny sometimes when whatever new health issue turned up, I couldn't figure out if it was cancer, COPD or old age.

So I have no complaints about the place in life where I have now landed. Except this: what I said above about having known the eventual outcome of my disease from the beginning and the implied acceptance in that statement? Maybe not so much.

I suspect I've been fooling myself or, if I had made peace with my death as I thought I had (with a hefty dose of help from psilocybin), it slipped away while I was enjoying those extra years.

My first clue to that was a bit more than two months ago when a variety of body aches began popping up regularly. It was not long before they became a daily routine. Certainly it occurred to me then that the cancer was on the move but I shoved the thought aside and took another ibuprofen.

The second clue turned up several weeks ago when the oncologist told me on a telephone visit that my recent CT scan was “not bad.” He said it in an uncharacteristically flat tone that told me it actually was not good news.

As I had done in the past, I could have read the visit summary doctors post to my online account within a day of our meeting but I skipped it this time and tried not to think about what he said. That wasn't wildly successful and the pain continued too.

On Tuesday this week, I spent an hour on a video visit with the man who has been my palliative care provider for more than a year. I like him enormously. He is the one who told me I am now eligible for hospice and MAID, and we discussed how that will work in general as we move forward together.

In future now, we will meet every two weeks instead of monthly. I feel safe with him.

What I do not feel is at peace. As I look back today at the early days of this journey, I am surprised at what now seems like arrogance in thinking something akin to, “I've got this. I can handle my end of days.”

Yeah. Right.

I've spent some of the time since the Tuesday video visit talking with a handful of friends I am totally comfortable with but trying not to lean on them too hard.

Most strongly, what I feel now is sad. So achingly sad at the thought of leaving. To make it even more poignant, this is a most beautiful spring season here. I could be convinced that that is just because I've become a short timer but what difference does the reason make. I'm still sad.

Could I be at the beginning of working my way through Elisabeth Kubler-Ross's five (or is it seven?) stages of grief? Obviously – see above – I've had time with denial. Some unfocused anger has erupted. Just this week, the effin' ants returned to the bathroom. The whole outdoors isn't enough for them?

It could be that I am too pragmatic to bother with the bargaining stage of grief but who knows. I'd like to skip the depression stage too and go straight to acceptance.

I was so certain I had this end of life stuff under control. It's going to be awhile.

Follow-Up on Monday's Death With Dignity Post

There is so much love in your responses to Monday's post about medical aid in dying. It goes both ways, you know.

Your comments are like an injection of strength for me. When I falter about all this death and dying stuff – as regularly happens - I think about your belief in me and I can find my way forward again completing the circle of this remarkable community you and I have developed.

It is both of us, you know, that makes this work.

Reading through all your caring, kind and understanding comments on Monday's post several times brought some questions to mind – or rather, some answers to questions you did and did not not ask but are lurking there if you pay attention.

Not for the first time, you mentioned my generosity in writing about real and scary stuff here. Funny. I have never thought of it as generous. Mostly, when it comes up, I wonder if I'm being self-indulgent.

Since I was a little girl, I have kept – if haphazardly so – journals about my life and whatever else interests me. Writing has always been how I sort out difficult events, thoughts, ideas.

I was so grateful when decades ago I ran across this quotation from British novelist E.M. Forster: “How can I tell what I think until I see what say?” Yes, I thought then, exactly. That's why I do all this scribbling. And it is what I have come to do with the blog.

In your comments, there is a suggestion or two I can't locate right now that I might stop writing this blog. Not yet, my friends, not yet. I still have a lot to figure out and will want your help along the way.

That's it for today. I know this is short and doesn't really go anywhere but it's the best I can do today and I'll explain on Friday.

Thank you all for your always interesting and thoughtful responses.

Oregon's Death With Dignity Law and Me

Last week, I spent the better part of an hour in a video meeting with a physician at the medical center where I have been treated for pancreatic cancer and COPD for the past three years.

The reason for our conversation was Oregon's Death With Dignity law or, as the doctor referred to it and which phrase I much prefer, Medical Aid in Dying.

Oregon was the first U.S. state, in 1994, to enact such a statute and it went into effect in 1997. Since then, seven more states and the District of Columbia have adopted similar statutes.

• California (End of Life Option Act; approved in 2015, in effect from 2016)
• Colorado (End of Life Options Act; 2016)
• District of Columbia (D.C. Death with Dignity Act; 2016/2017)
• Hawaii (Our Care, Our Choice Act; 2018/2019)
• Maine (Death with Dignity Act; 2019)
• New Jersey (Aid in Dying for the Terminally Ill Act; 2019)
• Oregon (Death with Dignity Act; 1994/1997)
• Vermont (Patient Choice and Control at the End of Life Act; 2013)
• Washington (Death with Dignity Act; 2008)

Here is a map of the United States showing the status of each state in regard to this kind of legislation:


According to the Oregon Death With Dignity annual report as quoted at the Death With Dignity website,

”In 2019, 112 Oregon physicians wrote 290 prescriptions to dying Oregonians who qualified for the Act; 188 people died using the medications obtained under the law.”

The 102 people with prescriptions in 2019 who did not take the prescribed drugs may have died without using them or may yet take them. Some people, I am told, like the feeling of control in having the drugs handy.

The up-front requirements to use the law are that the patient be at least 18 years old, a resident of Oregon, capable of making and articulating healthcare decisions and diagnosed with a terminal illness that will lead to death within six months.

There are several additional hoops to maneuver but they are not too onerous. First, the person must verbally request the drugs from the attending physician on two occasions, at least 15 days apart.

The attending physician and a consulting physician must agree on the diagnosis and the prognosis.

In addition to those two verbal requests 15 days apart, the patient must complete a written request form that requires two witness signatures. One witness may not be a relative or a physician who treats the person.

The doctor I spoke with Thursday helpfully told me that for $7, a UPS store will witness the document. I thought this odd, even kind of funny at first but I can understand that a relative or friend – and certainly an acquaintance – might not want to be part of such a request.

If either of the two physician feels the patient's judgment is impaired, the patient must be referred for a psychological examination.

From what I can tell, pharmacists can refuse to fill prescriptions for these lethal drugs. The doctor told me there is one pharmacy in Portland that does fill them. The price, he said, is about $700. Private insurance may pay the cost. Medicare does not.

A doctor need not be present when the patient takes the drug although he or she may be there if the patient asks. However, only the patient can administer the medication.

The drugs, the doctor told me, come in a bottle to which apple juice is added. The drugs cause no pain. The patient feels woozy almost immediately upon drinking the mixture, he said, and will fall into coma in four to five minutes. Death comes usually in 30 minutes to two hours. Rarely, it can be longer.

The patient can rescind the request for the drugs at any point in the process. There is, of course, no requirement that the drugs be used.

* * *

I'm writing this because I thought you might be interested and, having had the conversation only a few days ago, it is fresh in my mind now. You may have noticed that throughout, I have referred to “the patient” and not to I or me.

That is because it is hard to talk about my own death this way. (Or in any way, I suppose.) I thought, having understood from the diagnosis three years ago that I would eventually die of this cancer, I had it under control, that I accepted the eventuality and had made peace with it.

Apparently this is not so. Yet.

The question has come up now because, as I reported not long ago, the cancer in my lung is growing and due to the additional diagnosis of COPD, my immune system is too damaged for more chemotherapy that otherwise – in theory - could slow the cancer's growth.

Now, with the coronavirus that attacks lungs, chemotherapy is even moreso not an option.

So I contemplate my death a bit more urgently now. I am making peace with the fact that I will never have all the bits and pieces of my life in good order for the dear, dear friend who will be stuck with sorting it all out when I am gone. She says to me, don't worry about it. I'm trying.

My question to myself right now is how to live in the time remaining. And I do mean, live. But also, that is not to deny what is happening to me. The disease, doing what it must, marches forward even into its own oblivion. As do I.

Dying is part of living and I doubt that is something that will slip my mind. So maybe I need to find a balance.

Is there a place where life and death and meaning at least intersect if not each become part of a whole? Not that anyone has ever been able to define the meaning of life.

Undoubtedly, I'll have more to say later. Meanwhile, if you want more information about Death With Dignity laws, here are a couple of links to get you started:

Oregon Death With Dignity website
Death With Dignity National Center website

For individual state laws, search “death with dignity” and the state's name.

Cancer Pain

In the past two months or so, for the first time since I was diagnosed with pancreatic cancer in mid-2017, I live with pain. Until now, I have been incredibly lucky that the only big discomfort I have experienced was during recovery from the Whipple procedure.

Some years BC (before cancer), while I was stuck in bed with the last and worst flu I recall having, my big toe, just one big toe, hurt so badly, so deeply banging away at me, that I imagined finding someone, anyone, who would whack it off with a machete. The amputation, I reasoned in the depths of my fever swamp, couldn't possibly hurt more.

These new pains come with the territory of cancer. I call them body pains and several scatter themselves around my torso and back, rearranged in different places on different days.

As the nurses taught me when I was recovering from the Whipple, alternating acetaminophen with ibuprofen every six or eight hours takes care of pain with a reduced chance of injury to liver or other organs that might occur using only one of the drugs.

Although it takes about two hours to kick in, it works for me. And I don't need it every day. Two or three and, sometimes, four times a week, I'm pain free until evening.

The thing about pain that is not of the pounding, big-toe variety is how wearing it is. It's not that you lie curled in bed whimpering. It's that it grinds you down and after a few hours you feel as exhausted as if you've run a marathon.

Thank the gods for acetaminophen and ibuprofen.

A couple of weeks ago when I mentioned these pains to the oncologist, he did not need to go into a detailed explanation of what was happening to me. I knew I had entered a new, later phase of the disease when he said he could prescribe an opioid for me.

My only experience with that kind of drug was more than half a century ago when I was in my early twenties. After a couple of days of unending abdominal pain that nothing would help, my doctor sent me to the hospital, tests were done and still, no one knew why I hurt so much.

Several medications proved useless so I was then given morphine. It was fascinating. I have no idea what happens to other people but for me, it did nothing for the pain. It did not get anywhere near even taking off the edge.

Instead, I just didn't care. I still recall lying in that bed thinking, “Oh, wow, that is the worst pain I have ever felt. What color is it? I wondered. Does it move from here to there and back? Or does it stay in one place? Is it round or maybe square? If I poke that place, will it hurt more?” And so on.

From time to time, there were some strange-looking pink animals up near the ceiling of my room, but mostly I was fascinated with how much I hurt, feeling only curiosity as though I were studying it in someone else, trying to figure out its properties.

I've forgotten other details but eventually, they took away the morphine, the pain subsided and no one ever knew what was wrong.

When I was caring for my mother when she was dying of liver and breast cancer, she occasionally asked for one of her pain pills. One day she seemed to be in enough pain that I asked if she wanted to try the liquid morphine the doctor had left with us.

“Oh, no,” she said. “I don't want to get addicted.”

Eventually, I convinced that in her condition she was unlikely to run down the block and rob the candy store, and we were able to control her pain until she had a hallucinatory experience and refused to go there again. She died soon after that.

When I had recovered sufficiently from the Whipple surgery, the nurses in the oncology clinic at the medical center taught me how to use the medications I would need to take for the rest of my life and how I needed to eat now that a bunch of my organs had been removed.

At that time, aside from some remaining, minor pain related to the surgery that would soon dissipate, I felt almost like a normal person. But one nurse explained that should there be pain at a future date, the center has an entire department devoted to pain control that I could rely on.

So when the oncologist asked me if I wanted him to prescribe an opioid, I declined. Given my own and my mother's experience, I'll wait until I need it.

I mention all this because when I made the decision three years ago to write about this cancer journey, I promised myself that if I would do it at all, I would always be honest, that I would not omit the hard parts and I would not sugarcoat it.

Sometimes I have a bad pain day. Usually that results when I think, in the morning, that it's not so bad and I can do without the acetaminophen or ibuprofen. Wrong! If it hurts in the morning, it always gets worse. But I'm a slow learner and still sometimes try to get through the day without the drugs. It never works.

Please keep in mind, that this is a report, not a request for advice. What I like about what happens in the comments on this blog is that often, many of you have thoughtful responses that relate to living with the circumstances we are stuck with. I believe that is valuable for all of us and I greatly appreciate it.

“You are an Anomaly” Said the Oncologist

What an amazing amount of loving kindness you all left in the comments of last Monday's post. There are not good enough words to say how much you all mean to me. The best I can do is, thank you.

* * *

After several minutes of pleasantries at the beginning of our tele-medicine conversation, the oncologist told me that my most recent CT scan is “not bad.”

Not bad in the sense that although the cancer has increased in my lung since the previous most recent scan, the growth has been slow. This is surprising, he said, because I have had no chemotherapy (meant, in my case, to slow cancer growth) for a year.

And, apparently, it is enough of a surprise to classify me as an anomaly – an outcome that is not what is expected with my type of cancer and treatment. Don't let that fool you, though. The cancer continues to do what cancer does – grow and spread.

For now, said the doctor, additional chemotherapy is not recommended due to COVID-19's propensity to attack lungs and my impaired immune system. Of course, the chemo clinic takes every precaution against infection but nothing is perfect and I am more susceptible than people without lung or breathing difficulty. So no chemo and I am not certain that if it were recommended I would do it again.

What I didn't tell you in last Monday's post where I announced my week-long hiatus, is that the largest part of the reason for that downtime last week was to keep my anxiety to myself. It's always that way for me: pretty much full-time mental paralysis waiting to discuss a CT-scan with the doctor.

You might recall this paragraph from a week ago:

”And in recent weeks, what I believe to be late(r)-stage cancer symptoms: increased fatigue, body pains...waning appetite, weight loss and a golf-ball-sized growth I discovered four days ago on an inner thigh.”

The waning appetite had already begun to turn itself around when I spoke with the oncologist on Wednesday and the weight loss is righting itself too.

As to the body pains, the doctor said he could prescribe an opioid but I will wait. So far, over-the-counter medication is working and in the past seven or eight days, I have had almost as many pain-free days as painful ones.

So there you are – the cancer is on the move, although not too quickly. Appetite and weight are back to what is normal for me. Pain is controllable. And – oh yes, that golf-ball-sized growth in my groin.

Not cancer. I had to see a doctor in person to deal with what is called, she told me, Bartholin Gland Cyst. I was her second case of it that day.

It is relatively common and usually treated with an antibiotic and/or drainage of the cyst. I've opted for door number one for now and so far it is down to less than half its largest size.

So, that turned out to be a minor distraction compared to the daily upkeep of cancer and COPD.

There is no missing the fact that I am slowing down. Although the heavy fatigue I mentioned last week has morphed into lighter fatigue, there are those pesky pains. When there are none, I spend the day on alert, waiting for one to stab me here or ache there.

I am trying to stop doing that, with no discernible success yet.

You would think by now that I would have this living-with-a-terminal-disease stuff down pat. But no. My body keeps coming up with new ways to get at me, and my mind seems to have a mind of it own – dragging me around to check out some of the darker corridors of my thoughts.

Nevertheless, living is still good most of the time, and I'm not ready to trade it for anything else – especially now that I am officially an anomaly.

Trying to Make a Respite From and For Myself

Following a diagnostic procedure the day before, on 1 June 2017, a surgeon stood in my hospital room and told me I had pancreatic cancer.

Oof. I wouldn't wish that moment on anyone.

I had no illusions about the disease. My father had died of it and I knew that although few people get it (compared to breast or lung or prostate cancer), most of them die within a year or so.

A week later in a meeting with that surgeon and an oncologist, I was told that I was a good candidate for surgery because the lesion was located at one end of my pancreas and I was in excellent physical shape despite my 76 years.

They didn't pull any punches about what that surgery – called the Whipple Procedure – involves. In addition to removing a whole lot of one's innards (half the pancreas, the entire duodenum and gall bladder, a portion of the stomach and some other, smaller bits and pieces), all the connectors among organs would be rearranged and after more than 12 hours in surgery, it would be up to six months before I was completely recovered.

However, it would give me more months of life than I would have without the surgery.

A funny thing happens when you hear something like that: I found out how much more deeply I care about being alive than I'd ever thought about before.

As I've mentioned here, I made the choice right away to follow instructions of my surgeon and other physicians as closely as possible and let them run the show because they had so much more experience at this than I did or do.

That strategy has worked well for me. In June it will be three years since the surgery and although I've now also been diagnosed with COPD, pulmonary rehab gave me good tools to use to live as well as possible with that.

Here's why I'm doing this recap today: I've felt good or good enough for so long that I would like to experience – make that RE-experience - normal life, life before cancer. Because for the most part that's how I feel.

Yes, my energy is way below what it was pre-cancer and by mid-afternoon, I'm done for anything much more taxing then a book or movie. Residual pain, mostly minor, and some other physical artifacts get in the way sometimes but they are not debilitating.

Pills, inhalers and diet requirements need daily attention. And when I forget my new circumstance and walk at my previous speed, COPD forcefully reminds me that is no longer possible, as I heave to catch my breath.

Then there are the medical appointments. In person check-ups and check-ins, blood draws, port flushes, scans and more. I know all the doctors, RNs, technicians, schedulers and medical assistants quite well now. I think of them as friends but I wouldn't mind less time dealing with cancer and COPD.

If you've been hanging around here since this journey began, you know how I railed against becoming a “professional patient,” but that's what I've been now for a long time and it's not going to change.

I'm not complaining about the facts of all this which, under the circumstances, keep me rolling along quite well. And with a little practice, as new needs came about, I've folded them into daily routine not too much different from brushing my teeth.

But it's been long time and I'm tired now of accommodating cancer and COPD. I'm tired of so much of what I do every day being related to two deadly diseases. I'm tired of wondering if every twitch is a sign that the end is nigh.

Please don't think that I am wishing to die – far from it. Nor am I slipping into fantasy.

What I want is to figure out a way of being, of carving out a space to live in that doesn't always include disease at the edge – and forefront, too - of my consciousness.

Sometimes the wish comes to me as empty space and time, when cancer and COPD take a nap for awhile and leave me as I was before all this happened. A mini-vacation. Maybe even a whole day of it now and then.

Don't get me wrong. I am acutely aware of how lucky I am. Most people with my cancer are dead long before now. But I wish I could figure out how to make a respite for myself, some time to pretend – nay, forget - for a little while that this didn't happen to me.

Am I asking too much? I think I can't be alone in wanting this and that I can continue to be the realist that I am while taking a little vacation. I just haven't figured out how to do it yet.