Two or three or four weeks ago, a reader commented that I should not tell anyone about my terminal cancer diagnosis because I would then be identified only by that fact instead of all the other descriptions that could be said of me.
Two assumptions come with that reasoning: (1) that I care if people know I am dying (I do not) and (2) that dying or, at least, talking about it is taboo.
The second item is all too true. In the U.S., we hide dying from friends, neighbors, co-workers, even family sometimes so that death, when it arrives, is a shock to everyone left behind.
Certainly, everyone who finds him/herself in my position has the right to play it out any way they want. But I think keeping it secret does a disservice to the person, to the people who know and care about him or her and to the culture at large.
It makes the great final act of life too much a mystery and more frightening than it needs to be.
Did you know that only about 20 percent of deaths occur at home? That wasn't always so. Until 100 years ago, give or take, most people died in their own bed surrounded by family and loved ones. When the dying was extended, everyone, including the children, were involved in the caregiving.
When I was kid, about half my friends had one or two grandparents living with them. Some were healthy, some were not and it was not uncommon for a friend to tell me that she couldn't go bike-riding that morning because she was taking care of Gran while her mom was shopping.
An ailing grandparent was such a commonplace that we kids accepted it and, when it sometimes happened, the grandparent's death was – well, part of life which, I believe, is as it should be.
We are born, we live, we die. But we too often omit the third act from view.
It is the dying, rather than death itself, I am concerned with, and I become more convinced every day now, as I live with this death sentence, that it is a gift.
A gift of time that allows me to say the things I always ought to have done but too often have not. Of time to remember. Time to wonder at the great unknown. And time to talk. Oh god, yes. To talk and and talk and talk with those who will do so with me, about everything under the sun.
We are doing that here in these pages and your comments, thoughts and stories are enriching my final days.
Even though I have met only a few of you in person, we've been friends of a certain kind for a long time. Imagine how you would feel if, when the time comes, someone posted a note saying I died yesterday of cancer, and you had known nothing about it until then.
Would you feel betrayed? I think I would. Would you wonder why the disease had been kept a secret? I would. And I think I would feel cheated to be able to leave only a note of condolence rather than having had this wonderful conversation we are carrying on now.
No one wants to die but I cannot see the point in pretending my death is not visible on the horizon. In accepting that, I can surrender to life in full, keep moving forward and be as much in the here and now as humanly possible.
Dying is as much a part of living as birth. We should treat it with as much significance and honor it during every last day we have.
EDITORIAL NOTE:Judith Graham, who writes the Navigating Aging column at Kaiser Health News and who I've known for several years, interviewed me about my cancer diagnosis along with my decision to write about it for this blog. It was interesting for me to try to answer her wide-ranging questions as best I could and she pulled it all together in her usual excellent manner.
Oddly, although I wrote today's blog post yesterday before I read Judith's story, they turned out to be sort of companion pieces. You can read Judith's story here.
* * *
One of my oldest blog friends sent an email earlier this week noting:
”...it's heartening to know that you're not going to turn your blog into a 'Watch me die,' fiasco but continue it as a 'Watch me live' play-by-play.”
My thought was then and still is, “Oh god, I hope he's right. I'm not sure.”
In this final life predicament of mine, I'm flying blind. No one is prepared for this and in my case, I am unwilling to read about how others, knowing their approximate expiration date, have navigated the remaining time.
Writing is how I help myself figure out things. I was doing it a long time before there were blogs, even a long time before there was an internet and when I decided to let you, dear readers, in on my cancer diagnosis, I also declared to myself that I would write whatever was on my mind - or as close as I can determine - as if I were writing in one of my old analog journals.
What is new on Time Goes By now is that there will be fewer reported and researched posts. Most will be like this one, conjured from the thoughts and feelings flitting around the synapses of my brain.
These are easier to write, less time consuming and I need the extra hours in a week now. One thing I have learned in this first month is that knowing death is relatively imminent means there is a lot to do to be ready. When not procrastinating, I am busier than before this happened.
My end-of-life documents are long-since prepared and appointments with medical people are arranged for the next couple of months.
But there is homework to do and decisions to be made about palliative care issues and assisted dying, cremation to arrange, many last letters to write, visits with beloved friends, cleaning out my home of what will become useless detritus when I'm gone and much needed quiet time with myself.
Surprises eat up time too – more time, it feels like, than when such things happened “before.”
A week ago, hot water disappeared from my pipes and it was determined that a new water heater was required. Wh-a-a-a-a-t? At this particular moment in my swiftly shortening life, when I have a last chance to ponder my soul's relationship (or not) with the universe, my water heater dies? Before I do? Who thought that was a good idea?
And dear god, have you noticed what it costs to replace a water heater these days? Geez.
A day or two later, while carrying a big bundle of dirty laundry to the washing machine, I tripped on a dragging towel or bed sheet and crashed to the floor, banging my knees and my forehead horribly.
Although I quickly determined that nothing was broken or bleeding, the pain was terrible - throbbing away. I lay on the floor for a bit catching my breath and after a couple of minutes burst into tears – heavy, deep, uncontrollable sobs that went on and on.
My wits were still enough with me that I could tell right away, it being my first cry since this diagnosis, that my weeping was not at all about the pain in my knees and head.
While I lay there and in keeping with my slighlty off-center sense of humor, a cartoon I had seen recently came to mind of a woman lying on her floor. Parodying that awful TV commercial, she says, “Help. I've fallen and can't think of a reason to get up.”
Nor could I. For awhile.
After 15 or 20 minutes that old, impossibly cheerful Jerome Kern/Dorothy Fields song intruded on my misery: “Pick yourself up, dust yourself off and start all over again.” Really? At this point in my life I've turned into that much a Pollyanna?
Today marks four weeks since the doctors told me cancer has reasserted itself and there is no treatment. That news was not a surprise. Although I had been pronounced cancer-free since last January, I knew it was more likely than not to return.
Right now my timeline is squishy. Chemotherapy begun last Wednesday is designed to slow the growth of the new tumors and thereby extend the estimated time during which I will feel healthy before cancer symptoms begin to kick in.
As you might imagine, a lot has been running through my mind, ping-ponging around as I explained in a post last week, on a wide variety of end-of-life-related thoughts and feelings.
Even so, I have found a lot to laugh about in all this. I've always had a well-developed sense of the macabre – so much so that it's been a long while since I've thought of it as black humor. To me it's just funny alongside every other kind of funny. (Unless I'm whistling past the graveyard and don't know it.)
In the interval where I live these days between the belief (shattered now, of course) that I am the one immortal and my ending, there are personal decisions to be made. An important one to work on has been about how I want to spend my final months.
The broad outline is already settled and I will write about that in time. But an issue came up Friday when I was approached about reviewing a book that, the editor wrote in an email, explains what's wrong with how we die these days and what people can do to die in a manner that is better – at least, according to the author, a medical professional who has worked with terminally ill people for some years.
If the book were a general critique of (to borrow an old phrase) “the American way of death,” I might not be as offended even if the title does read as too much a projection of the author's personal preference for end-of-life.
After 25-plus years of studying aging, death and dying I know that no one really understands growing old until they get there themselves. I have unlimited gratitude and admiration for caregivers of all sorts. They are special in ways I cannot match but they do not KNOW about old age in a real sense until it is their time.
Similarly, I have learned now that living with a death sentence cannot be imagined. No one can understand until or unless they are tagged with that verdict.
What puts me off is the evident certainty in the book title (particularly couched in its boomer-generation phrasing) and the description I received that the author knows what values and priorities should define a person's dying days.
Let me be clear about that: There is no right way to die. Equally so, there is no wrong way.
* * *
NOTE:I am not telling you the names of the book and the author for several reasons: I have read only a fairly thorough description of it in an email, it will not be published until next year and it contains information about navigating the medical establishment during one's last weeks or months that could be useful to people who have not researched this as extensively as I have.
Further, in the 15-year history of this blog, I have made it a rule to write only about books I can unequivocally recommend which is not something I want to change at this late date.
In these circumstances, it would be unfair to me to leave readers only with my personal objections. Hence, no title or author.
* * *
Making a choice about how to die - which is another way of looking at being given a medical death sentence - is highly personal, maybe the most personal act in a lifetime.
So I am going to rely on what I have come to believe from all the decades of study I've done to inform how I spend the remaining time of this last journey.
Most of all, I do not want to be influenced by anyone else's idea of what they believe is a good or right kind of death.
I am being careful to do some things - and just as careful not to do others - to ensure that my death (and the getting there in the interim) is my own. Among those things is not to read other people's advice about how to die.
It has been three weeks since the doctors told me there is no treatment for my cancer and that video above is a pretty close representation of what my mind, since then, has been doing.
It's all over the place skipping from one feeling, thought, idea or notion to another without finishing the previous one. I can go from considering death as the last great adventure to paralyzing fear in a second or two.
Or from pondering the mystery of cancer cells gone awry in a way that is certain to kill themselves by killing me, their host, to wondering how I should now choose the books I read.
From wondering why I can't yet make myself order my cremation (it's not hard to do, for god's sake) to clicking over to YouTube to watch cute kitty videos while worrying that I'm wasting what time I have.
And so on. Random. Purposeless. Unproductive.
There is no instruction book for end of life especially in a culture, the United States, that hides death and dying from everyday life so that we who are near checkout time are on our own with few, if any, examples to call on.
In fact, for all the hundreds of books and thousands of articles, studies and news stories I've read about ageing, death and dying, there is hardly anything written by or for the dying person. Almost all of it is for, by or about the caregiver.
Which is not to take a whit away from the kind, dedicated people who take on that burden privately and professionally. They are special in ways I am not nor could be. But their experience is different from the person doing the dying.
What I have discovered is that little cultural attention is paid to this period of time between dire diagnosis and death. It is fairly easy to find out what the final days, hours, moments of life will be like – at least from the outside. There are many sources.
But no one tells us about navigating the period of time - be it weeks, months, a year or so - when you can no longer fool yourself into believing you will live another 20 years and become one of the ancients.
So I'm making it up as I go along. What most keeps me engaged are friends online and in person. They are my comfort and ease who, depending on distance, have stepped up without being asked, keeping in touch by phone, email, inviting me to lunch and dinner and offering open-ended help now and in the future.
Even as someone who always has needed and still needs more time alone than many others, nothing else keeps my mind from ping-ponging hither and yon as much as close contact with people I love.
Quite a few readers took me at my word in Wednesday's post that you could ask me anything about this new and final journey in my life, and it would be churlish of me not to try to answer.
Please keep in mind that these are one person's answers at a very early point on the road. I might change my mind later or see the issue from a different point of view, and don't forget that there are no right or wrong answers. Each of us has his/her own path.
* * *
“Are you angry about having this cancer? If so, about what/or whom? And how do you handle the anger?”
RONNI: I'm not angry and that might be related to my rejection, when I was first diagnosed last year, of the idea of “fighting” or “beating” cancer but to follow the instruction and direction of medical experts who have much more experience with cancer than I do. Without dismissing such potential causes as smoking, pollution, genetics, radiation, etc., I see cancer as a random occurrence.
Early on, I read about some cancer patients who get hung up on “why me?” My response was “why not me?” Most of my family died of cancer and, 40 percent of all Americans will have some form of cancer during their lives. Knowing all that pretty much eliminates the possibility of anger or blame.
“People have told me that once others find out you're terminal that becomes your identity, so you might not want to lead with that. At what point in conversation does your health status usually come up? I know it's on your mind, but do casual acquaintances need to know and do you want them to?”
RONNI: All kinds of things (that I will discuss in a future blog post) fall away at just about the exact moment the doctor says, “there is no treatment” (which is their common expression for “you're terminal.)”
At least, that is true for me and one of those things that fell away is any concern at all about what any person thinks about me in any regard. How others identify me is not my concern.
Before I published my first blog post about this diagnosis, I told the people I love and feel closest to. I missed three or four but they later read the blog posts and we've since talked about it together.
I also announced it at the next meeting of my current affairs discussion group although three or four had already read the first blog post. These are people I see regularly at our meetings, who had kept the group going during the months I was recovering from surgery last year and are an important part of my life.
In other circumstances, it depends on the nature of the gathering, who is attending, what we're talking about and if it is appropriate to discuss at that time. My point is to not deliberately make it a secret which would inevitably become awkward.
“The wish you expressed...to die 'awake, lucid, not drugged or in pain, is where I always get hung up when I come to thinking about my own dying time. Because so often, when nearing death, to be pain free (or at least pain-bearable) IS, absolutely, to be drugged, not lucid, not awake."
RONNI: Good question. Note that I said I “wish” to die wide awake. Each person's situation is different but if I can arrange to die as I described, it is my first choice. My new palliative care physician tells me that not everyone with cancer experiences pain or, not great pain so maybe I'll be lucky. And if not - well, too bad. The doctor knows my desire in this regard and will work with me.
"Since you are a writer Ronni, how about telling people you are writing/living your final chapter."
RONNI: I think that's what I'm doing at this blog, Katherine. If you mean other people who don't read TGB, I've told them if the subject comes up.
From NANA ROYER:
"I wonder if you're aware of the existence of Death Cafes."
RONNI: Yes, and I wrote about them a few years ago. I had an infuriating experience at my first one that put me off. A woman at my table, no matter what else the rest of us were discussing, promoted her counseling business, handing out flyers and such.
During a break, I complained to one of the organizers who said he would speak with the woman but she continued to tout her business during the second half.
A year or so later, a friend talked me into attending another death cafe in a different town and by god that woman was there – just not at my table. Death cafes ought to be a good thing, getting together in safe places where we can let go of past taboos about discussing death and dying.
"A quick question: Do you think we know we have died?"
RONNI: I have no idea. Does anyone else want to take a whack at that?
"Ronni, how do you deal with your feelings about terminal illness? Do you see a counselor?"
RONNI: Hmmm. Complicated. The short answer is that so far – this is still new to me – I don't “deal” with them or do anything about them. They just are.
Fear is the big one. Three or four or five times a day, it invades my whole body. It feels like each individual cell is quivering with fear. Everything stops for me. Except the fear. More, deeper, heavier than I've ever felt.
And after a couple of minutes it goes away and I can catch my breath again. I've learned now to wait for that.
I don't see a counselor and won't seek one. Everyone deals with their demons in their own way. Mine is to make room to feel whatever I'm feeling, to try to understand it. It can be painful but I haven't died of it yet and I've learned some things about life in general and about myself.
One more: Several readers, on Wednesday, wrote that we are all terminal. That may be so philosophically but believe me, in my case anyway, it has nothing to do with being told there is no treatment and you will die of your disease. Hearing those words has focused my mind in whole new ways that bear no resemblance to “we are all terminal.”
Let me wind up this Q&A session with a note from reader Jackie:
“The best thing that old friends and what few family members are left can do for me - just spend their time with me talking about everything under the sun.”
Oh, yes. The best antidote I have found when I get a bit maudlin about my new circumstance is to spend time with a friend or friends talking, talking, talking. It always leaves me light-hearted.
EDITORIAL NOTE:To name this ship we are on together now for this final journey of mine, it was a close vote among Curiosity, Ronni's Ship of Friends and This End Up. It is the votes sent by email that put This End Up over the top by three votes, and so it is. I'm not sure how we're going to use the name of the boat yet but feel free to offer your suggestions.
* * *
The headline today is my new status: terminally ill. After knowing this for two-and-a-half weeks now, I still don't fully believe it. First of all, I feel as healthy as the best I have ever been. Nothing hurts. I have no symptoms. I can do anything I need to do.
Except for one thing: I have been disabused of that marvelous notion humans have all our lives of being the one immortal: you might die one day, but not me.
When I wake each morning, that seems to remain so. I lie there looking forward to the day, eager to get going, maybe reviewing a list in my head of things I need or want to do.
It's always been like that but now it doesn't last long enough for me to finish the list, as I am rudely interrupted recalling that I live in a different country now – the land of the terminally ill.
Isn't that a horrible phrase, “terminally ill.” It's too clinical, even industrial. It ignores the humanity of the life that will be extinguished and it sounds so imminent, as if I am already on the first bus out of here - a bus being driven, of course, by the grim reaper, hood in place and scythe in hand.
But that's not true of me. For awhile anyway, I've got some time. None of the doctors and nurses knows exactly how long in my case but, given some chemotherapy, six to eight months before symptoms begin to kick in has been mentioned.
Me? I take the prediction with some caution. The time could be shorter or it could be longer and since there is nothing I can do to affect the timing, the only rational choice for me is to carry on living.
Without, however, losing sight of the impending exit date. To ignore it would be absurd.
On the day I learned of my new status, some decisions came to me immediately. I've mentioned giving up the daily workout I've always despised, and now I get to eat all the ice cream and cheeses – my two favorite foods – as I want.
I explained in an earlier post that I have no bucket list and I am uninterested in them except for this thought that came to me three or four days ago: I want to go somewhere to spend time playing with a whole passel kittens – puppies would work too – you know how they climb all over you and lick your face and squeak and squeal and tumble around and make you laugh like a four-year-old.
Maybe more than once I want to do that before I go. I need to find somewhere near here that will allow it.
Another decision I made right away is that I will not keep my new status a secret. I proactively tell people whom I want to know or who need to know, and I will tell others as needs be.
That can turn out to be tricky.
Indeed, I need to avoid that barren phrase, “terminally ill,” because it sure does push people away. Even without it, few know what to say to a person whose days are officially numbered. Except for some.
Many years ago, when we were decades younger than we are now, a friend and I joked that if either of us ever had a terminal disease, the healthy one would interview the other to death.
As a matter of fact, she and I had a long phone call over the weekend. Sure enough, she asked a lot of questions and among all sorts of other topics, we talked about my new status, my predicament as it were, some of the details and we toyed with some of the unknowables, having a fine ol' time doing it.
Afterward, I was curious about what the internet says about talking with people who are dying.
The Mayo Clinic has a pretty good page about how to be with a loved one who is terminally ill. Some other online advice feels suspect to me: choose your words carefully, don't ask questions, talk about something other than cancer.
Huh? Just speak. I don't care what words you use. Ask any questions at all and god, at this point, certainly talk about cancer and dying all you want. I can't promise my responses will useful because I've never done this before and I'm still learning. But do say what you want to say.
The one big thing I don't want is advice about other treatments, getting second opinions and miracle cures. Too many of those have already arrived over the transom of my email account and so far, I have been polite to the writers.
But after a dozen or more of them, I'm done with politesse. If there were anything that could cure this cancer, the medical people who care for me work at a world-class cancer institute and they would know about it. If there were real miracle cures, believe me, they would not be a secret to anyone.
For as long as I can remember, I have been curious about dying. When I have explained myself through the years, I've said that I want to be awake, lucid, not drugged or in pain because I want to experience the event of dying as clearly as possible. It is the last great mystery of life and I don't want to miss it.
In knowing that, however, what I had never considered is the process of being terminally ill, the path leading up to that death.
This is a wholely different place from how we live before something like this happens. It changes everything. Not, perhaps, the acts of daily life (I don't intend to alter that much). Instead, it shades and colors everything in ways that are new to me.
I'm only just beginning to work with that and try to figure it out.
Before we get to this week's Alex and Ronni Show, let's decide on a name for the boat we are all on during what I now know is the final voyage of my life.
On Monday, reader Genie commented in reference to my choice to continue writing and publishing this blog for as long as I can during the weeks and/or (hopefully) months remaining in my life. ”This morning I imagine you as the captain for this journey,” she wrote.
Then, Tarzana suggested a contest to name the boat:
”I can already think of many possibilities,” she wrote. “Courageous, Hope, Gratitude, Fortitude, Journey's End and so forth. Your loving readers are much cleverer than I so I'd expect some real stunning, even humorous entries.”
More readers left their suggestions and I chose five of them for us to vote on. In alphabetical order, they are:
Ark de Triomphe
Ronni's Ship of Friends
This End Up
There were a lot of other good ones but choices need to be made so here we are.
You may vote by leaving the name you like in the comments below (do not send email; they will not be counted). You don't need to say anything else but you certainly may if you want. Voting ends at midnight Pacific Time on Sunday 21 October and I'll announce the winner on 24 Wednesday 2018.
(Or, you can just count in the comments to figure out the winner for yourself.)
THE ALEX AND RONNI SHOW
On Tuesday, my former husband and I recorded another episode of The Alex and Ronni Show. We spent most of the time discussing my new life predicament. There is a lot of laughing. Which is a good thing.
Following Friday's post, janinsanfran sent this note:
”A friend whose partner has just advanced into hospice care (spinal cancers) wrote this to their friends: 'There is no good way to die. But if we must die, and we all must, may it be with a community as loving, as present, as kind as you.'”
Oh my god, yes. How can I possibly thank this community that has responded to Friday's post about my new cancer with such an outpouring of love and care and concern and humor.
I've always believed you are, each and every one of you, the most special blog readers on the planet and you proved it on Friday and over and over again through the weekend.
You have had me weeping for all the best reasons.
I read each of the hundreds of responses in the comments and dozens of others that arrived via email and Facebook. And then I read them all again.
So let's do this together and see what happens. I made a few notes from all your comments on TGB, Facebook and emails.
In just the third comment to arrive, Genie wrote:
”This morning I imagine you as the captain for this journey. I only hope the ship is large because there are so many of us coming aboard.”
And the rest of you ran with the boat metaphor, adopting it as our preferred means of travel.
Deborah May wishes for the next phase be “full of sunshine and serenity - with calm waters given the number of us on this boat (ocean liner) with you.”
Tarzana thinks we should hold a contest to name this boat we're on:
”I can already think of many possibilities,” she wrote. “Courageous, Hope, Gratitude, Fortitude, Journey's End and so forth. Your loving readers are much cleverer than I so I'd expect some real stunning, even humorous entries.”
Do take a shot at it if you are so inclined (yes, definitely even humorous entries). I'll select four or five and then we can vote.
I learned that there are more of you than I guessed who are cancer survivors or in the throes of treatment or living with the aftermath of this awful disease – or another terrible “disease of age.” I wish with all my might we did not share this.
Of course, I recognize many names in those Friday comments but there are a lot, too, that I've never seen before, first-time commenters. Quite a few of you mentioned that you've been reading TGB since the beginning or near enough – did you know that's 15 years ago now?
I was amazed to read that for some of you, the blog is the first thing you check online each morning. If I'd known that, I would have worked harder at it all these years.
Daria tells us that “a friend nearing the end of her life smiled and said, 'Now I can eat bacon anytime I want!'” Yes! Me too.
I mentioned that I instantly gave up my daily workout and am relieved to not need to worry about dementia anymore. I've since added Facebook. I use FB only as a secondary distribution channel for TGB and I have not the first clue about how to use it. To me, it's functionality appears to be a holy mess and now I have the best reason in the world not to learn it. You guys came up with some other things I don't need to do anymore.
Kathy Zachary said she won't miss flossing when she's dead. Yes. That too. Mary noted that I “won’t see the horror and dismantling of our democracy if trump is re-elected in 2020.”
Good thought but I've been saying since 2015 that I will be pissed off big time if I die before I find out what the demise of the Trump era will be like. Color me pissed.
Marilyn Dalton noted that I don't have to worry about outliving my money. Good point. And Carol Girgis gave me a smile that nearly broke my face, first quoting me, "Now I don't have to worry about dementia" and responding, “Best line I've ever read, written in these circumstances.”
Moving along, poet Tom Delmore sent a short video by Leonard Cohen who died in 2016 at the age of 81. It is supposed to be about finding his voice but it is also deeply pertinent to what I face now.
May I live up to Cohen's conclusion in these coming final days.
Apparently Leonard Cohen is on others' minds too. Faith sent a Cohen poem about courage which you will find here.
John Brayton left this quotation from Donald Hall's final book, A Carnival of Losses: Notes on Nearing Ninety - new this year and an instant favorite of mine. Hall died earlier this year at age 89:
"I feel the circles grow smaller, and old age is a ceremony of losses, which is on the whole preferable to dying at forty-seven or fifty-two. When I lament and darken over my diminishments, I accomplish nothing. It's better to sit at the window all day, pleased to watch birds, barns, and flowers."
I agree, and thank you Mr. Hall for saying it so well.
What a gift and honor to have so many of you on this new journey with me. With all you here, I think I can get through just about anything.
”...progressive disease,” says the CT scan report, “with new and enlarging multiple metastatic lung nodules and new peritoneal nodules.”
It was Monday morning this week when I heard that statement paraphrased in a meeting with my oncology physician, my nurse and a social worker at the Oregon Health & Sciences University (OHSU), following up on a CT scan from the previous Friday.
Although I was hoping to be wrong, it's not like I wasn't expecting this outcome. Ten days or so earlier, I had seen the chart of a blood test for “tumor markers”. It looks like this:
I don't know what is being measured and we don't need to know. What matters is that the high number on the far left was reported just before my Whipple surgery for pancreatic cancer in June 2017. The next one – at zero – was following the surgery and you can see what has transpired since then, triggering the conclusive CT scan at the end of last week.
The only treatment is chemotherapy which, they tell me, cannot kill the cancer but can slow the growth enough that I might have six or eight months of healthy living before symptoms begin.
The awful irony is that right now I feel terrific, in as excellent health as I was before I was diagnosed with cancer in mid-2017. Even so, the first decision I made about the rest of my life is to stop my daily workout routine. Immediately.
Because I know that regular and fairly heavy exercise goes a long way toward staying healthy in old age, I've been doing that (with the exception of the months of recovery after the surgery) five mornings out of seven for six or seven years - and I despised every moment of it. Now there is no reason and I am relieved.
Another upside is that I don't have to worry about dementia anymore. No more of those little online tests about what are normal memory problems and what are not. Whew. I'm glad to be done with that too.
I'm sure that in the coming days and weeks I'll find some other things I can happily leave behind.
So what should I do with the time left to me? Yeah, yeah, I know – everyone is dying every day but believe me, I now know that it is quite a different thing from that abstract platitude to a closely defined period of time.
I never had a plan for my life. Beyond being a professional ballet dancer for which I turned out to be physically unsuited, I didn't know what I wanted to do when I grew up. I followed my nose as things came into view and had a wonderful career in media production – radio, television, internet - for nearly 50 years.
Only recently did I discover a quotation from entertainer Elton John that well describes how I have lived: “If you let things happen, that is a magical life.”
And so it has been. I've mostly “let things happen” and have rarely been disappointed.
So no bucket list for me – in fact, I actively dislike the entire idea. I already have plenty of memories to recall and anyway, I really like this life I have now.
A young person would certainly find it boring. Each morning, I commute from the bedroom to my computer. As we all can do now, I follow the news and its commentary and other kinds of writing, too, from wonderful writers all over the world online.
There are friends to have lunch and spend time with. Lots of good books to read along with many good movies and TV shows if I want. Not to mention, my current affairs discussion group which has become more important to me than I would have guessed when it began two years ago.
My main daily occupation is this blog and its subject – what it is like to grow old. I've been doing this for about 15 years and still am not tired of it. It feels a lot like the years I was employed – going to work every day doing something that I enjoy.
Five days into my new circumstance now, I have decided to keep doing these things as if I had all the time in the world. That may change in the weeks and months to come and if so, I'll figure out then what is next.
For now, from time to time I will write here about this final journey hoping that what could be taken as overly self-indulgent might, for some readers, be of possible value as another person's way of approaching the end of life.
Another quotation that has helped drive my life is from the British writer, E.M. Forster. I discovered it when I was in my twenties realizing then that it describes perfectly how my mind worked and still works:
”How do I know what I think until I see what I say.”
For me, it takes writing it down (on paper or, these days, on a screen) to know with any clarity what I think and believe. So writing for you is also for me and will help me work out this frightening last mile or two.
I have sometimes said to myself and to others, how hard could dying be? Everyone who has ever lived has done it – even the really dumb ones. But of course, it's not anywhere near that simple, is it?
For the near future, nothing will change here at Time Goes By except that I will more frequently write about heading into the great unknown. If you want to join me, I will be so happy to have you here.
[NOTE:On Tuesday, my former husband Alex Bennett and I, recorded a new episode of The Alex and Ronni Show. It is posted at the bottom of this story.
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As I begin writing this on Thursday morning, everything is fine. It's a normal summer morning - the sun is shining (it will be a scorcher this afternoon), I've had breakfast, am working on another cup of coffee and looking forward to lunch with a friend.
Nothing remarkable is going on.
And that is the point.
There have been a lot of new subscribers to TGB in the past couple of weeks so here is a short recap to bring you up to date:
In June 2017, I was diagnosed with pancreatic cancer, endured a 12-hour Whipple surgery from which it took most of a year to recover including three months of chemotherapy.
An internal bleed developed leading, over months, to many blood transfusions and, eventually, two (much less invasive) surgeries in April that were successful. There has been no bleeding since then but thanks to the chemo and the blood loss, I became severely anemic.
That led to five, weekly, liquid iron infusions that ended three weeks ago.
Okay. That is the bare bones history. It is the hardest thing I have ever been through in my 77 years, and although I went for the treatment, deep down I believed I would be dead by now.
Personal health reporter Jane Brody pointed out in The New York Times earlier this week that pancreatic cancer is rare, accounting for just three percent of all cancers, but is one of the deadliest:
”Although 55,440 cases, affecting 29,200 men and 26,240 women,” writes Brody, “are expected to be diagnosed this year in the United States, 44,330 people will die of it, often within months of diagnosis, making it the fourth leading cause of cancer deaths in this country (after lung, colorectal and breast cancer).”
I ran those numbers. They mean that only 20 percent will survive beyond a few months.
Back in mid-January, after the chemotherapy ended, my Whipple surgeon told me that blood tests had revealed “no current evidence of cancer.” (They are always so meticulously careful with their wording, these cancer doctors.) “Go,” he said waving me toward the door, “and enjoy your life.”
God knows I tried but I didn't feel much like celebrating. Certainly I was relieved but it was tempered with the knowledge that blood tests are not conclusive.
Three weeks later, after reviewing other tests including a CT scan which is more definitive, my oncologist said to me, “There is no sign of the cancer at this time.” (They are always so meticulously careful with their wording, these cancer doctors.)
But I still wasn't ready to throw a party. Smiles on the faces of friends when I told them the scan results were hugely encouraging prompting my own smiles in return. But facts interfered with the joy I believed I should be feeling.
Undoubtedly that reticence was due at least in part to the fact that I knew – and know - pancreatic cancer is resistant to most therapies and it often recurs following surgery either in the pancreas again or another body part.
And even if I had been dancing in the street, there was still the anemia plaguing me which, weeks later, led to the iron infusions.
Thursday morning (today, as I write this), I woke to an email message linking to my online medical records where there were results of blood tests taken on Wednesday. There was also a note from my primary care physician:
”Your lab work looks great!” he wrote. “No signs of anemia and looks like your iron stores are all tanked up.”
And then, THEN – even though the anemia was due to blood loss and chemotherapy, not cancer – I finally felt free to celebrate. I thought my heart might burst as tears of joy spilled into my coffee.
It seems nuts to me that overcoming anemia makes more difference to my sense of good health than cancer-free test results earlier this year. I felt the gradual return to more normal energy levels during the five weeks of iron infusions but there had been poor test results for so long I don't think I trusted my own senses.
I haven't forgotten the high incidence of recurring cancer I face but now I can set that aside. That's what I have wanted more than anything – to feel like I did before all this happened.
And now I do. Yes, some bits and pieces are missing. I'm short a gall bladder, a duodenum, part of my stomach and half my pancreas. There are three or four pills I need to take several times a day for the rest of my life to make up for those losses.
But that is nothing compared to this marvelous feeling of well-being and most of all, ordinariness I have now.
U.S. Supreme Court Justice Ruth Bader Ginsburg – “Notorious RBG” – has been a hero of mine for a long time. What I did not know until sometime after my initial diagnosis is, as Jane Brody explains in The Times, Ginsburg
”...had part of her pancreas removed after a routine CT scan revealed a one-centimeter lesion. While that lesion was benign, a smaller tumor the surgeon found was malignant and had not yet spread beyond the pancreas.”
That happened in 2009, when she was – as I was last year – age 76. Justice Ginsburg gives this old woman hope she too can make it at least another nine years cancer-free and even resurrect her pre-cancer goal to live as long as her great aunt Edith, 89.
But it doesn't matter if I don't. The universe gave me this extra time that 80 percent of pancreatic cancer patients don't get. Most of all, right now, I want to wallow in the joy of my return to ordinary health.
* * *
Here is latest episode of The Alex and Ronni Show.
At the bottom of today's story is the latest episode of The Alex and Ronni Show. Some of the conversation relates to this post and - god help us, there's more kitty talk.
* * *
On this date a year ago, I spent 12 hours under anesthesia while a surgeon and his many associates in that room poked around in my wide-open torso removing and/or rearranging several organs or parts thereof with the goal of saving my life.
Here is what I looked like directly after they stapled me back together and then carefully watched over me until I was allowed to go home 11 days later.
My friend and health care proxy Autumn Schoen, who traveled from New Jersey to be with me that week, took the photo at my request – I wanted to know what I looked like after such a formidable and frightening procedure. (Thank god they put you to sleep.)
If you recall, Autumn also did an terrific job of keeping you up to date on my progress with her blog posts (here, here and here) until I could write them again myself.
What the surgeons did that day is called the Whipple Procedure, also known as a pancreaticoduodenectomy. (Yeah, just try to pronounce that.)
Although the surgeon had pulled no punches explaining how difficult it would be for me, particularly the recovery, I still was not prepared for how awful the first couple of months turned out to be.
Getting through that period is the hardest thing I've ever done. Nothing in my life comes close. Many mornings I seriously wished I had rejected the surgery and just let myself die.
Slowly, however, it got better. Before the surgery, I had stocked up on frozen foods since I knew I wouldn't be able to cook for awhile. Friends and neighbors generously shopped for me, cleaned Ollie the cat's litter box, took out the trash, drove me to medical appointments and that's just the daily, practical stuff.
They also were there with moral support through those first couple of hard months and the entire year following, too, as I gradually improved. Except for a couple of remaining small issues, I have designated myself 95 percent recovered.
Even better, several tests over the past five months show I am free of cancer, the doctors say. Since it's pancreatic cancer we're talking about and hardly anyone survives even a year, I must have been Mother Teresa in a past life to have gotten this far.
“This definitely is a grace – defined by Christians as an unearned, unmerited, undeserved favor from god. If like me, god is a tricky concept for you, think of it as the same kind of gift but from the universe.”
It is impossible for me to properly express my gratitude not only to those friends and neighbors who helped at home but to the dozens of doctors, nurses, technicians and the many other kinds of care givers and helpers at Oregon Health & Science University (OHSU) who have been there every step of the way with their unfailing knowledge, expertise, compassion, understanding, encouragement and kindness.
Getting to where I am, however, is not like healing a broken leg - finished and done with after six weeks or so. I am acutely aware that the cancer can return and often does, and that's not easy to live with.
Until a year ago, even with my long-term annoyance at television and radio commercials for prescription drugs, I had no idea how frequent and frightening cancer “cure” commercials are. I don't suppose it occurred to me, pre-diagnosis, that they could apply to my circumstance. That's different now.
These days, I am incapable of ignoring them and cannot bear to hear them. As a result, I have become masterly swift at hitting the mute button when those adverts appear.
Surely I've mentioned several times over this past year that the last thing I have wanted is to become a professional patient. Ha! How naive of me.
Nobody can take up to 20 pills a day, count them out weekly into their little container compartments, keep up with refills so not to run out (somehow, they never need replenishing on the same day or week) and not be reminded several times a day that you will always be a patient now.
I've tried to make jokes about how my doctors, lab attendants, nurses and others at OHSU are now the major part of my social life but it's actually not a joke – I see some of them more frequently than friends and in fact, some have become friends of a kind I don't have a word for. But it is a good thing.
So I've had to make peace with being a professional patient. And I'm getting good at it. When I gave a doctor the daily notes I had made over several weeks tracking the internal bleed (now fixed), he said, “I wish all our patients made lists like this for us.”
Until the cancer diagnosis, I had lived a remarkably healthy life for 75-odd years. The worst that happened was a bad flu every few years and I didn't give my well-being much thought beyond keeping up with exercise fairly regularly and relatively healthy food.
But I'm a different person now. I am not as comfortable in my skin, nor in my mind and I no longer trust my body. Too often a minor pain or twitch leaves me asking myself if it's cancer-related. I need to gird myself before checking each new set of test results online.
When I'm tired toward the end of each day – which is still much earlier in the afternoon than before all this happened - my thoughts turn dark. My more rational self tells me to let it go, just live, enjoy this extra time I've been given and I'm usually able to do that. Until next time, and then I start over.
I don't yet understand the consequences of the changes that have come over me. So much of this year has been – and still is - taken up with the busy-ness of having – or, having had - a terrible disease that there is not always time for usual tasks, let alone complex reflection.
But now that I am better, maybe I can devote some thought to how I am different and what, if anything, it means.
You're reading all this today because so many of you have been here throughout this long, strange trip and because today is a milestone, an anniversary of consequence in my life.
Before writing today's post, I re-read every “cancer post” I've written along with every comment from you, dear readers. You, collectively, have been my daily rock with your constant and continuing support, encouragement and kind responses.
I thank you from the bottom of my heart.
Now, on to the second anniversary.
* * *
Here is latest episode of The Alex and Ronni Show.
Any of you who have been hanging out here, even irregularly, over the past nine months knows that last June I was given one damned, big deal, scary medical diagnosis: pancreatic cancer.
So few people can even be treated for it that survival is almost a fantasy. From time to time over my life, I had wondered what it feels like to be handed a death sentence - particularly so when my parents, several years apart, were each given such news.
When my turn arrived, I still didn't know how it feels. Unreal? Like a mistake had been made? Why don't I feel sick? In the ensuing days, there were undercurrents of fear but mostly, my imagination failed me.
Is it, do you suppose, that we are incapable of imagining our own deaths? Or more to the point, imagining not being here in this world any longer? I have no idea about that.
In the months since then, my body has healed from the extensive surgery, I've gotten through the followup chemotherapy and in an announcement as momentous as the original diagnosis, a month ago, the doctors told me I am cancer free. “Go and live your life,” my surgeon said.
And so I have. Happily. But it is not the life I had before.
There is a shadow now that follows me around. I sense it right behind me, leaning up against me. It is not painful, it doesn't get in my way of moving around and doing what I want and it's not there all the time. Just often enough to be a reminder that I am no longer the healthy woman I was once lucky enough to be.
What I have come to see is that the shadow is a tentativeness, an uncertainty. And it didn't help when the oncologist said the other day that she is adding a “tumor marker” to the list of blood tests I regularly undergo.
Don't get me wrong. The shadow, reinforced now with my knowledge of the tumor marker, is not debilitating and I am certainly not sad or distressed or gloomy. But it does have an effect almost daily. I don't mean to make more of this than is there but it is a regular reminder than the cancer might recur - in my pancreas again or somewhere else.
Or it might not. But I don't seem to be able to ignore the possibility and I sure would like to. Isn't there an old saying about not buying trouble?
All of you were so wonderfully supportive during my surgical recovery and following treatment.
As so many of you mentioned about others' comments here, it helped me a lot to know what you have gone through and how you have handled your own serious health issues. Now I wonder if you can help again.
Do you understand what I'm trying to explain about the shadow? Have you experienced it? Did you want to set it aside as much as I do and enjoy the time you have been granted free of care and concern?
If so, how did you make peace with that shadow of uncertainty?
”...the thing is, once something goes wrong, forever after you know that something CAN go wrong. Up until then, we're all blessed with kind of an ignorant sense of invincibility...
“None of us know what's going to hit us out of the blue, or when, but once we get winged by something, I think, we are all a little bit more fearful...
“The passage of time helps, and with enough time, we regain some of that feeling of invincibility.
Think of today's post as an extension, a follow-up to Wednesday's which was little more than a jump-start for the many thoughtful, useful and inspiring reader comments about what comes after recovery from a serious disease.
The quotation above is one of them, left by TGB reader Patty-in-New-York who nailed my pre-cancer sense of invincibility. Until that diagnosis last June, I thought I understood what it is like to face a life-threatening illness.
Wrong. I didn't have a clue.
The long weeks of recovery from surgery taught me about disability. About giving over my independence to the kind people who helped me during that time with the everyday, ordinary necessities of living. About constraints on the physical things I could do. And about how those new limitations gave me a smaller world view than I had before or want to have.
Isn't it interesting how, when the doctor hands you a terrible diagnosis or an outside force, an accident for example, leaves you with a broken hip or worse, you are plunged into the world of the sick in no more than a minute, but it can take weeks and months after you have healed to recover your place in the world of the healthy.
Or, as Patty-in-New-York suggests, you arrive at a different kind of normal. I doubt I will ever feel invincible again but since I wrote Wednesday's post (on Tuesday), I received an unexpected boost toward whatever my new normal will be.
On Wednesday morning, I met with the surgeon who performed the Whipple Procedure on me in June. As regular readers know, on Monday this week, a CT scan had matched earlier blood tests in showing my body to be clean of cancer.
A good-sized part of me had never expected that and as I mentioned on Wednesday, I wanted to celebrate but somehow wasn't feeling it. That changed when the surgeon told me in person, face-to-face, that there is no cancer, “Go live your life,” he said.
Although I didn't know it until that moment, it was important to me to hear that sentence out loud, not in a written scan analysis. To be reminded again that the remarkable doctor who, with his great knowledge of pancreatic cancer and his excellent surgical team, spent 12 hours on his feet last June, 12 hours that saved my life.
After meeting with him, I wept and I rejoiced and I had lunch with a friend and then I went home and celebrated by dancing to Joe Cocker singing live in a 1992 concert, Cry Me a River.
It will take a little more time but now I know I'm going to be just fine.
We don't much think about – or, perhaps, it is I who has not done so – who we are. What descriptions we have of ourselves accumulate, I think, over our lifetimes and we hardly notice it happening: doctor, lawyer, Indian chief, mother, father, brother, sister, fat, skinny, young, old, married, single and so on.
For example, since in the United States we mostly identify ourselves with what we are paid money to do, I am a former radio producer, TV producer, internet news managing editor, New Yorker morphed now into a retiree who blogs about what it's like to be old and who, way near the top of the list, thinks of herself as healthy.
No more. Last June, “cancer patient” was added to my list of personal descriptors, something I see in retrospect was an easier change to make than I would have thought.
All it takes is a massive surgery and lengthy recovery period accompanied by pain, pills and doctor visits to self-identify as a sick person Or, at minimum, no longer healthy.
I didn't see it coming, didn't even notice, consciously, that the switch had happened until this week. One way I suspect that happens is the medical checklist.
When you have a serious ongoing disease, you are asked to fill out a lot of forms. They are mostly identical and involve checking yes or no on long, long lists of diseases, conditions and symptoms. I've checked off no in all of them all my life. And then eight months ago, I had to check yes on cancer.
I was not healthy anymore. As I may have related to you in the past, a more light-hearted take on the issue was spoken by my primary care physician: “Ronni,” he said, “except for the cancer, you're very healthy.”
Riiiiight – and other than that, Mrs. Lincoln, how did you enjoy the play. That doctor and I have had several good laughs about his bon mot gone awry.
Who we are in our minds, in our bones, affects how we understand ourselves, present ourselves to the world and informs many of the choices we make. Cancer patient is not what I want to be part of my self-image but it happened.
Then, this week, another change took place. On Monday, I had a CT scan, a more definitive test for cancer cells than the test I told you about a couple of weeks ago. Like that first test, this one came back with the best news any cancer patient can hope for:
“CT looks good,” wrote my medical oncologist in her test results analysis. “There is no sign of the cancer at this time.”
That's two tests two weeks apart with the same great, good news. Only a tiny minority of pancreatic cancer patients get this far so I should be ecstatic.
How come I'm not, then?
Intellectually, I'm over the moon but the the thought lacks the emotional joy I expected, the urge to dance around the house, for example, to Joe Cocker's Cry Me a River at full volume.
Instead, even if I am not shrugging off the news, my mind slipped straight into anticipation of the apprehension I felt this time as I waited for the test results that will be repeated every four months or so when they continue to check for cancer. What is the matter with me?
Here's what I think happened:
That added definition of sickly person crept up on me so quietly I hardly noticed it these past months. Even as I have felt increasingly better physically, the daily pills, the chemo treatments, the blood tests, the transfusions along with the many doctors, nurses and other healthcare providers all became silent markers of my new status which I internalized without any thought, made part of my self-image.
While I wasn't paying attention, I became a different person than I have known for my 76 years, someone identified by a terrible disease, and I suspect I am not alone in this phenomenon.
Major life events, good and bad, are stressors that can alter our self-image. There is even a scale for it called the Holmes-Rahe Life Stress Inventory on which my recent life event, “Major personal injury or illness,” is listed at number six out of 43 items.
Since Monday when I received the good test news and recognized that I wasn't feeling like a kid on Christmas morning, I realized I need another change in self-image – from sickly to healthy again or, perhaps, in the more familiar vernacular of the cancer world, survivor.
It may take awhile to make the switch back, but at least I am doing it consciously this time instead of it sneaking up on me while I wasn't paying attention.
Does this resonate with you? Have major life events changed your sense of yourself? For better or worse?
At first, I wrote this post with a long and winding introduction to the news – this great big fat good news - but that doesn't seem fair so I'm redoing it and adding what had been intro material as an addendum below. Here is the news:
On Friday, my Whipple Procedure surgeon said that the many tests given during my hospital stay 10 days ago showed – and I quote - “no current evidence of cancer”.
Just for fun, let's repeat that: no current evidence of cancer. Isn't that amazing.
One of the surgeon's nurses who I've come to know a bit relayed his statement to me via phone message and added, “so go celebrate.”
I started with a good cry. When I tapped the phone off, the tears just flowed on their own. There turns out to be a nice symmetry too: the day after this overwhelming and unexpected news was given to me – that is, 20 January – was the seven-month anniversary of the Whipple surgery last June.
This definitely is a grace – defined by Christians as an unearned, unmerited, undeserved favor from god. If like me, god is a tricky concept for you, think of it as the same kind of gift but from the universe.
It is a grace because it's a big deal and I certainly did nothing to cause it. The doctors and nurses and other healthcare people at OHSU did all the work – the surgery, help with recovery, chemotherapy, hand-holding, question answering, etc.
All I did was follow their instructions to the best of my ability.
And then there are all of you – the wonderful TGB readers who every day have left encouraging notes, stories, prayers and thoughts. Can anyone prove they don't work? I can't, and they helped keep me going especially on the most difficult days.
Friends and neighbors belong on this list too – the people who have served as chauffeurs to and from the doctors, shoppers before I could drive again after the surgery, cat care when I couldn't bend to clean the litter box, among so much more including unending moral support.
Thank you seems too puny but it is deeply heartfelt.
Even with this great good news, however, there is more medical stuff to come. As I mentioned last Monday, I have a small, internal bleed that, if it does not heal on its own, will require surgery which will be extensive enough to result in a recovery period almost as difficult as the Whipple. What helps make it tolerable for me is that it is a mechanical problem – sort of a loose connection – unrelated to pancreatic cancer.
The decision about the surgery will be made in early February.
Unfortunately, I can't just relegate this bout of cancer to a minor interruption in life and get on with everything else. Tests will be needed every few months for as long as I live to check for any recurrence or new cancer. Too bad about that but after these past seven months, I'm pretty sure I can manage it without too much anxiety.
As the old song says, “whatever will be, will be,” but for today, let's imagine I've shipped off a bottle of champagne to every one of you and together let's toast the universe, its occasional gifts and my incredible, great, good luck.
Thank you all so much for helping me through this ordeal. You are the best.
Here's something I didn't know about cancer and I'll bet you didn't know either until now:
”...the lifetime probability of being diagnosed with the disease is slightly higher for men than for women, with adult height accounting for about a third of the difference. Studies have shown that taller people have a greater risk of cancer.
Hmmph. Being only 5 feet, two inches tall didn't help me.
It's still a great little factoid to have and it is from a story in the Washington Post about the annual report from the American Cancer Society - this year titled Cancer Facts and Figures 2018.
You're probably not surprised to know that since I was diagnosed with pancreatic cancer last June, I've become more interested in cancer generally so I've been looking at news stories more carefully.
The disease, in its many forms, has been frustratingly difficult to treat, let alone cure – physicians have been trying to do so since at least 2500 BC. In the four-plus millennia that have followed, science has been able to reduce the incidences of many childhood diseases, of tuberculosis and of small pox, for example, to almost none.
But cancer, the number two killer in the United States, continues to be intractable.
Even so and as excruciatingly slow as it is, there has been positive change. The Post again:
”Overall, the cancer death rate has dropped from 215.1 per 100,000 population in 1991 to 158.6 per 100,000 in 2015.
“The nation's overall cancer death rate declined 1.7 percent in 2015, the latest indication of steady, long-term progress against the disease, according to a new report by the American Cancer Society.
“Over nearly a quarter-century, the mortality rate has fallen 26 percent, resulting in almost 2.4 million fewer deaths than if peak rates had continued...
“Even so, an estimated 609,000 people are expected to die of the ailment this year, while 1.74 million will be diagnosed with it.
Here is a chart of the number deaths from certain cancers expected during 2018:
After heart disease, cancer is the second leading cause of death overall in the U.S. but there are disparities of varying degrees among racial and age groups. As the Post notes, the 2015 mortality rate was 14 percent higher in blacks than white, but was 33 percent at its peak in 1993. However,
”...that trend masks significant disparities among age groups. Among people 65 and older, the death rate for blacks was 7 percent higher than for whites, a smaller disparity that likely reflects the effects of Medicare's universal health-care access.
“Among Americans younger than 65, the mortality rate was almost a third higher among blacks than whites — with even larger disparities in many states.”
Eventually, cancer affects just about everyone in the United States. Forty percent of Americans will, in their lifetimes, be diagnosed with one form of the disease or another making it almost impossible for anyone but a hermit to not have a relative, friend or neighbor who is afflicted.
In my case, both my parents died of cancer – breast and liver for my mother; liver and pancreatic for my father. Although I'm grateful to have been extraordinarily healthy throughout my 76 years until the diagnosis, it's hard to see how I could escape the family fate especially since I smoked for many years.
When I underwent a simultaneous endoscopy and colonoscopy last week to determine the details of an internal bleed, I was asked – as I had been just prior to my Whipple surgery in June – to give permission for the doctors to remove some small pieces of tissue for study.
Of course, I agreed both times. It's the least I can do to help researchers coax this “emperor of all maladies” to give up its horrible secrets.
The full report from the American Cancer Society, Cancer Facts and Figures 2018, is available here.
In a repeat from last November, I appeared at the clinic for my Wednesday chemotherapy infusion last week but when the usual blood tests came back, my red cell count was too low for treatment.
The infusion was canceled and like last time, the tram took me from the waterfront campus to the OHSU hospital up on the hill for an overnight transfusion of blood. Two units this time instead of four.
And because I now have an internal bleed, a whole lot of tests:
combined colonoscopy (including the infamous prep)/endoscopy
There were probably other tests I've overlooked. Later, to help combat the anemia, an infusion of liquid iron which, the doctor informed me, looks pretty much like motor oil – and so it does.
I've been home since Friday evening, mostly sleeping due to the truth of the old hospital joke about it being nowhere to get any rest.
As I've mentioned here before, the staff at every level at OHSU is excellent. This time there were more doctors than in the past – maybe eight or ten or more - each with his/her area of expertise in regard to the internal bleed that needs to be dealt with.
All of them and the nurses, the CNAs and everyone else who attends to patients, are smart, knowledgeable in their areas of expertise, kind, caring and just plain nice people.
Next steps are that this week, I have a bunch of medical appointments to see what the decisions or choices may be.
Meanwhile, I have some new medications to take and what an awkward schedule they require. There is one I must take an hour before each meal, another to take 30 minutes before breakfast and dinner but not lunch, a couple that cannot be taken in combination with certain others and so on.
I'm working off a brand-new, home-made chart to keep it all straight.
Remember way back when I said I would not allow myself to become a professional patient? What a crock. The pill schedule alone ensures that I need to be aware of time and medications all day every day.
The doctors tell me the bleed, small that it is, is at the site of a connection between hoses (or whatever other body part) made during the Whipple precedure in June. If my interpretation is correct this is, essentially, a mechanical problem not a cancer issue. I'll know more later this week.
This all came out of nowhere for me. You see, I thought for the time-being, my job was, to the degree possible, to withstand the side effects of chemo until it was done in March.
I didn't count on an all new, out-of-the-blue medical event. There is not much difference at my end (as opposed to the doctors') between this and being hit by a truck in terms of how it interrupts my life.
But that thought also is a reminder that to extent possible, I must go on living as I choose. I can complain about the pill schedule, about being tired too much, about additional medical appointments and about the next unexpected medical intrusion but there is no point in letting them take over my life completely. That would be a terrible mistake.
As far as I know, pancreatic cancer is random. It might have been you, but this time it's me and there is no point in being miserable about something I can't change. Just live. And laugh. And make the best of what I have.
I know that sounds like I've gone all Pollyanna on you but is there another choice? I don't think so.
* * *
About two weeks ago here, I told you about a book of essays, No Time to Spare, by Ursula K. Le Guin. A few days later, TGB reader Lynn Lawrence emailed to ask for my snailmail address to send me a book.
It arrived within a couple of days - the Le Guin book. Lynn had missed my posting about it but had read an excerpt somewhere else and thought it was perfect for me. So we decided together via email, that I would offer another book giveaway – just one this time and do thank Lynn for it if you win..
We'll do it the same way as always with giveaways here:
Just tell me in the comments below that, “Yes, I want to win the book.” Or, you could say, “Me, me, me.” or anything else that indicates your interest.
The winner (you can live in any country) is selected by an online random number generator and I will have your email addresses from the comment form. I will then email the winner to get your snailmail addresses to send off the book.
The contest will remain open through 12 midnight Pacific Time on Tuesday 16 January 2018, and the winner will be announced on Friday morning's regular post, 19 January 2018.
It's Friday evening as I write this and I'm just now home from the two nights in the hospital. Cancer related, of course.
It was due to a repeat performance of November when I had extremely low red blood cell count. This time, more blood transfusions, plus an internal bleed that involved the necessity of a couple of procedures to figure out where it is and the cause.
I'll explain more next week but now I just need to go to bed. As I'm sure any of you who have been there know that there is no such thing as sleep in a hospital.
One thing for Celia Andrews and Yvonne Behrens-Waldbaum who each won a copy of Malcolm Nance's book: Yvonne blogs at Aging Us.
I didn't get the books in the mail before going to the hospital and probably won't get to the post office until early next week but I'll mail them as soon as possible.
There is so much email piled up that I may not be able to respond to it all. My apologies but there is only so much time in life. Thank you for your patience. I'm fine and be back to my usual self on the blog by Monday.
When I began chemotherapy in September, six months of treatment sounded like an eternity, not something I needed to think about for a long time.
Instead, I reasoned, just show up once a week for the infusion, take the oral chemo at home daily as prescribed and find out in March 2018 what good, if any, it had done.
Like some other new experiences I have encountered since the June diagnosis of pancreatic cancer, things are not necessarily as easy or as obvious as they were BD (before diagnosis).
First, there was no forgetting. During the day or two leading up to each weekly visit to the chemo clinic, the questions rolled around in my head: Is this working? What will be the outcome in March? Is pancreatic cancer painful toward the end? Will I still be here at the end of 2018? Or not? And so on.
Generally, I have been able to, as they say, hold my shit together when I am with other people. Alone, however, I've been known to pull off the road or street I'm driving on to wipe away the tears at my unknown future.
According to different sources, between five and nine percent of people diagnosed with pancreatic cancer are still alive five years later.
(I am not unaware that at my age, 76, I could be dead of all sorts of other things by 2022, but pancreatic adenocarcinoma – the type I and about 85 percent of all pancreatic patients have – is one of the top four or five deadliest cancers so I cannot go around fooling myself about my predicament.)
But there have been questions I haven't asked, places I have not wanted to go or, more truthfully, have not be able to make myself face. One of those, through these three months of chemo so far, is to ask what is the range of possible outcomes from the surgery and now, chemo?
What is there, I have wondered between “Congratulations, no detectible cancer” and “Sorry, it didn't work”? I have not been able to say those words yet.
Until Wednesday this week.
It wasn't on my written list of topics for the medical oncologist. It just popped out toward the end after she had given my other four or five questions positive reponses.
As I felt tears welling up, I also managed to mention that I have a growing terror of what she will tell me in March, and I had only half jokingly been considering asking to keep up the weekly chemo sessions into an indefinite future so the question would never come up.
But my mouth had got ahead my fear and there was the question floating in large letters in the air between us.
The doctor repeated what she said a few minutes earlier, that even with my huge drop in red blood cells last month requiring an overnight stay in hospital to transfuse four units of blood, I am doing well with the treatment.
She believes, she said, based on knowledge and clinical experience, that there is an 85-to-90 percent chance of not finding detectible cancer in March.
Then my tears broke through. Tears of relief.
One of the things they don't teach you in life is what to do when, for example, you are presented with a terrible diagnosis and death looms. After many months of suffering uncomfortable sitting, I finally decided a few weeks ago to buy a new desk chair. But then, wondered I, what difference does it make if I'm not going to live much longer.
I wavered for a few weeks – go head and buy. No, don't bother. But my neck hurt at the end of each day at the desk so I reluctantly bought the chair.
Yesterday morning, after having slept happily on the doctor's prediction, I easily bought a pair of silk pants I've been putting off for months for the same reason as the desk chair. Now I know differently: so what if I die before wearing them more than once; it's not like the price broke my bank.
Yes, I know. Statistics cannot reveal individual outcome, and even the best professionals' predictions can be wrong for all kinds of reasons.
Nevertheless, I was cheered by her answer and more importantly, understood finally that I must go on living - in all ways - until I can't any more from whatever cause, and if that means a new pair of white silk pants, go for it.
After my meeting with the doctor, as the nurse was preparing my infusion, she told me the story of another patient, a man in his 70s, who was in the chemo clinic for treatment of lung cancer.
He told her that 10 years previously he had been successfully treated for melanoma and that 35 years ago he had had the Whipple Procedure. The nurse told me she couldn't figure out if he was lucky or incredibly unlucky.
To me, however, the man's 35-year-old Whipple is what stuck in my mind. I wonder if, even through fear and tears, we are all supreme optimists until the very end.
It was a magnificently clear day Wednesday so I could see Mt. Hood out the windows of my treatment room. That doesn't happen much in winter so I took it as an omen. Whether of good fortune or the black cat variety, we'll need to wait until March.
It is not difficult to understand that a diagnosis of cancer – in my case, pancreatic – might produce an existential crisis or, at least, a renewed look at what you have supposed these many years is the meaning of your life, and of the choices you have made.
This struck me with force last week when one of my physicians suggested I take an antidepressant.
The doctor's idea was not without cause. It's not going too far to say that for several days I had found myself mired in a slough of despond, trying to wade through a bunch of negative thoughts that bubbled up unbidden.
The worst was the notion of my unprovable belief that the chemotherapy is not working. So what is the point, thought I, of struggling through it. I also spent some time wondering such things as how incapacitated I might become if/when the disease progresses and I tried out various scenarios of how I would die and...
Well, you get the idea.
The doctor recommended sertaline, generic Zoloft, that he said would help lift the evident depression I was experiencing. I told him I'd do some homework, think about it and get back to him.
It is not an easy drug. As all the reputable medical websites explain, it is used to treat depression, obsessive-compulsive disorder, panic disorder, anxiety disorders, post-traumatic stress disorder (PTSD), and premenstrual dysphoric disorder (PMDD).
The many potential side effects cannot be dismissed without serious consideration:
⚫ Skin rash or hives (with or without fever or joint pain); difficulty breathing; swelling of your face, lips, tongue, or throat require emergency attention.
⚫ Such symptoms as anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself should be reported to one's physician right away.
⚫ Not to mention agitation, hallucinations, fever, sweating, shivering, fast heart rate, muscle stiffness, twitching, loss of coordination, nausea, vomiting, or diarrhea.
There are worse. I will spare you.
The thing about moods, I have noticed in my going-on eight decades, is that they change. Sometimes for obvious reasons, sometimes not so clear.
Mood is closely related to happiness or lack thereof and there have been a lot of books and magazine articles in the past few years about how to achieve happiness. My point of view has always been that one cannot know happiness and probably not even just a buoyant mood without having experienced negative feelings.
Happiness is not a goal in my world, it is a byproduct. The feeling arises when I've been doing something pleasurable or fulfilling or achieved something I have worked hard for.
Happiness cannot be forced any more than depression can be. To me, they are opposite sides of the same coin and I have often welcomed unhappiness or depression or melancholy because those feelings are as crucial to understanding one's self and one's world as discovering what gives you pleasure, i.e. happiness or contentment.
And so I do not want a false or drugged happiness. Especially with the possibility of those side effects; I already live with the same or similar ones from the chemotherapy.
For many years before I was confronted six months ago with the reality of an immanent death sentence, I have always thought – and still do - that I want to be lucid when I die and not in pain. I want to experience the process with as much attention and clarity as possible - the last great adventure of earthly life.
Only half joking, my plan had been to live as long as my great Aunt Edith did (89) or her sister, my grandmother, 92. That's probably not a good bet now. But that doesn't change what I have always intended in the waning years of my life, particularly, the final weeks and months:
I want to feel all the emotions that go with the winding down, that go with knowing that death is no longer theoretical. I want to watch myself make peace – if that is what happens, or not - with existence as I experienced it, with its ending and with the single event that equalizes us all.
No matter how it feels to go through that final phase of life, I want to be certain they are my feelings and not imposed by a drug.