The good, the bad, and the ugly

Hey, I should die more often! It's a good gig if you can get it. I've been raking in a bounty of cookies, bread, scones, jam...home-made rasperry jam by Chris on home-made bread by Jamie---it doesn't get any better than that.

So, more of the good: After I posted that ``if you stubbed your toe, I want to hear about it'', my friend Allison replied saying ``As a matter of fact I did stub my toe, and I've attached a picture of it''. That cracked me up. She also attached some sayings generated by AI, among which my favorites were:

``Those who cannot answer numbers, cannot manipulate laughter.''

and

``Don't say `I want to travel the world with you'. Say `I am so great'.''

Also, I misspoke when I said I was the only one who liked Jay's Gangnam-style video. What I meant to say was that it is the most popular video in the history of videos. One irate fan of Mr. Foster has already written me to protest. Herr Professor Doctor ``I am so great'' Mitchell regrets the error.

Turning to the realm of innovative technology, yesterday Kaia invented a parachute made of plastic bags and string that comes equipped with a food tray in case you want to enjoy lunch on the way down. I would have no trouble trusting it for jumps of three feet or less. Later I watched her do the butterfly stroke and flip turns at her swim lessons. Like mother, like daughter!

As to the bad: We have cancelled our Oregon vacation for the first week of August. First of all, the drive would be miserable for me. Even driving to the swim lesson was unpleasant. But by far the main reason is that at this point I need to stay close to my UW Med support team. Things could take a sudden turn for the worse at any time.

This brings me to the ugly, which I bring up only because I don't want anyone (including me) to be taken by surprise. When I asked the oncologist for a timeline, what he actually said was ``two months at the outside''. I hope he's wrong, but we all know examples of how fast cancer can act. At a recent wedding the groom's father was in an advanced stage of pancreatic cancer, but he was dancing and seemed to be having a good time. A couple of weeks later he passed away. In my case, I've seen the actual liver scan, and as long as you know that dark represents cancer and light represents healthy cells, you don't need to be an expert to see the situation is bleak. A couple of days ago I got the actual radiologist's report, which is equally grim. It's the classic exponential pattern of cell growth that we use as an example in first-year calculus. My point is that you and I should be prepared for the possibility of quick downward spiral and lights out. To tell you the truth, quick would be good, once it starts in earnest.

A couple of other things in the radiology report piqued my interest in an academic sort of way (in the context of the liver issue, they don't really matter). One is that I have ``massive gallbladder wall edema, likely reactive to metastatic liver disease''. The other is the cryptic remark ``Mosaic groundglass pattern of the lungs, possibly related to patient or

small airways disease''. Say what? Mosaic groundglass? I'll ask the onc just out of curiosity. He's currently on vacation though. The nerve of him!

Oh, a number of people have suggested medical marijuana. In fact some mysteriously appeared on our doormat, presumably delivered by Cheech and Chong (the two geezers have been performing at local casinos recently). I thank them very much for the gesture, but I do need to check with the doc first. Certain drugs (e.g. acetominophen) have to be avoided when you already have compromised liver function. You might think ``what does it matter, under the circumstances?''. But I want to be sure first that it won't make me feel worse.

With that I will say Yay Mariners! for winning the Astros series (and especially the amazing first game), and sign off.

A fabulous day to all!

Moving on

Friends and family have asked what they can do. For Wendy, well, she's not sure herself. She will let you know. For me---I do have a request. I would love to hear from you, but I'd especially love to hear about fun things that you're doing. Vacations, hikes, trips to Bora Bora, funny grandkid stories, kid stories, amusing pet stories, interesting movies you've seen or books you've read, athletic events, parties, theorems you've proved, whatever. Jokes are always good. For instance, I am probably the number-one fan of Jay's legendary sense of humor (I may be the unique person who loved his ``Gangnam Style'' video). Here's one I got from Jay in response to my ``invitation to my funeral'' post. I loved it then, and it still makes me smile now. He said that he too had a dream:

Steve reaches the front of the line at the Pearly Gates. St. Peter looks up from his list and raises an eyebrow.

``Mitchell? Really?''

``Yeah, I'm kinda surprised myself.''

I used to think it would be bad form to go on about how much fun you're having to a dying person, but now that I'm in that position I realize that, at least for me, exactly the opposite is true. I want to hear all about it! The flip side is that I used to think it would be equally bad form to go on about things going wrong in your life. Not so. If you stubbed your toe and feel like venting about it (hey, stubbing a toe can be really painful), I'm happy to listen. I may be dying, but I'm still the same old me. The last thing I want is to spend what time remains being gloomy and doomy or being treated with kid gloves. Please just be yourself; there is no right or wrong thing to say.

I do want to revisit a couple of more serious (but not gloomy!) points that I've written about in earlier posts. The first is the ubiquitous obituary line ``so-and-so died after a long, courageous battle with cancer''. When I see that line, I always picture a person who has suffered through the countless indignities of chemo, radiation, immunotherapy and more, a person who tried literally everything before finally succumbing. A person who would have tried the atezo that I declined, a person who would not have declined the new chemo as I just did. It's impressive, and puts me a little on the defensive. Is stopping all treatment a failure of courage? I like to think it is not. There is a cultural-philosophical issue, namely that in our culture it seems that even dying at 65 (well, I'm going to try for 66!) is a kind of gross injustice to be fought to the bitter end, until finally we are dragged, kicking and screaming, to the other side.

There's a New Yorker cartoon in which a man and the Grim Reaper are sitting on the couch watching TV. The caption: ``All right, just one more episode.''

Sure, I'd like another episode. A whole season would be nice. But death is just a part of life, and for me, there comes a point where it is better to just accept it as gracefully as possible. Dying suddenly of a heart-attack would be simpler and cleaner, but in a way I'm grateful to have had these three years to think about it. That might be the one advantage of dying of cancer.

On the practical side, so to speak, we have a family vacation on the Oregon Coast coming up at the very end of July. Now, although the oncologist said my symptoms were all from the cancer, the timing and the fact that pembro can produce similar symptoms leads me to believe that the pembro at least added to the problem, particularly the fatigue. Since we've stopped the pembro, I'm hoping that I'll get a little window of time where I feel better than I do now. If I were to start that chemo, however, I'd have to start it right away (otherwise there is no point). That would totally ruin the vacation time with still more fatigue, nausea, etc. etc. That makes no sense to me, given the low probability of even modest results. I want to get the most out of every day.

The second point regards accepting death with peace and equanimity, not fear or resentment. This is of course a very personal matter, but I can tell you what works for me. The key is to strip away every layer of egocentrism (there are several), and to put myself into that Big Picture of which I am a microscopically tiny part. First of all, there is nothing special about my death. Everyone dies; that's just the way it is. Furthermore, at least in my case, there is nothing ``unfair'' about it. On the contrary, I've been extraordinarily lucky.

When I say ``everyone dies'', one's first thought is probably of the here and now, and of people---relatives, friends---that one knows, or at the next level, fellow travellers of the 20th and 21st centuries in which we've lived. I like to go further and pick a particular historical or prehistorical period and imagine those who lived and died then. Today for some reason I've been thinking about the first humans to cross the Bering strait into North America, and the innumerable generations that continued the journey to the south. They lived; they died. Just like us. Contemplating this gives me a deep sense of peace. It gives me a feeling of solidarity, if you will, with those people of long ago, and strengthens my belief that death---at my age, at least---should not be viewed as a tragedy.

At the next layer we have the notorious egocentrism of the human species. We like to think that we are special, that we somehow deserve a better fate than a starfish, a hummingbird, or a coyote. No. We are all part of the same amazing Animal Kingdom. And why stop at the animals? A wildflower, a saguaro cactus, a towering redwood---they live; they die. They die because they were born. Then there is the host of plants and animals that are now extinct. The variety of extinct pre-vertebrate marine animals alone is mind-boggling. And all this is just on Planet Earth! We have no idea what else lies out there.

When I put my own life and death in this context, within the infinite beautiful cycle of life and death of all living creatures, in its turn embedded in the vast mysterious fabric of Space-Time, I can feel only awe, wonder, gratitude and a profound peace.

The end is my beginning.

Very bad news, alas

Note: I will write a longer post in the next few days. For now, just the essentials.

The bone scan showed nothing, but the results of the liver scan are very bad. The main tumor has tripled in size, for example, and the satellite lesions have coalesced into larger ones. The oncologist says my symptoms (fatigue, abdominal pain) are definitely due to the cancer and not the pembro.

So the pembro isn't working and will be discontinued. The doc is reluctant to put a number on things, understandably, but says it is very possible that I will die within two months. I will try to beat that number, of course, but it's pretty clear that this is the beginning of the end. We looked at the scans, and the dark areas corresponding to tumor are beginning to overwhelm the light (healthy) parts. Hospice care is now part of the conversation.

The doc mentioned one (and only one) further treatment that could be tried. It is another type of chemo. He wasn't at all enthusiastic about it, and for the first time in the process put doing nothing on the table as an option. My decision at this point is that I'm done with treatment. I'll explain this in more detail in my long post, but the short version is the usual story. The new chemo isn't likely to work, and will make me feel a lot worse.

Don't worry about me. I'm fine, really, and totally at peace with the situation. The one in need of support is my wonderful wife, who is very strong but I'm sure could use that support.

And don't forget: It's a beautiful world!

Get out of jail free

My big scan day was much shorter than expected. They were able to eliminate some of the down time, and I was only there from 11 to 3.

Beth the Nuclear Medicine technician takes me back to put in an IV and injects me with weapons-grade plutonium. Then she hands me a small orange piece of paper with something scribbled on it. ``This is your get-out-of-jail-free card,'' she says. If you set off a radiation detector in the next three days and homeland security asks you ``Are you carrying radioactive material?'', you can say, why yes sir I am, in my body, and show them this." I guess I'll be glowing in the dark for a while.

I also had to fill out a form that asked, among other things, whether I'd ever had a bad fall. Well now, back in 1972 I had a rather long one. This led to a pleasant conversation about Yosemite, concussions, and the fact she was formerly on a Search and Rescue Team. When she was a kid in 1969, Beth's parents took her to Yosemite and to Haight-Ashbury. Those were the days. Well, we'll see you back here at 2, says Beth.

Then on to the CT-scan, same-old same-old, except that the IV is already in. Drink the KoolAid. Enter the spinning vortex of the Intergalactic Wormhole Transporter. Hear the voice: Breathe in. Hold your breath. Breathe.

Back for the bone scan at 2. I wasn't worried about the ``lying motionless for one to two hours'', because if I've learned anything in my hospital experience it's that you have to go straight to the source for reliable information. You can't believe the patient information brochure, or a receptionist, or even a radiologist. In this instance, you need to talk to a technician who actually administers the scans. So I called Nuclear Medicine a couple of weeks ago, and talked to in sequence a receptionist, a radiologist and a technician. All were very nice and very helpful, but it's the technician who has the real scoop. Oh, don't worry, she said. There are plenty of opportunities to go the bathroom, and the longest continuous scan is no more than 25 minutes.

Not only that, but Mark, the technician who did my scan, announced at the start that ``we want your bladder as EMPTY as possible''. Can do, sir, can do!

The bone scanner is an impressive, gargantuan device. It has two huge semi-circular arcs behind that rotate two rectangular gamma-ray devices through 360 degrees so as to scan from any desired angle. ``Airport rules,'' says Mark, ``all metal objects in the tray.'' My arms are held to my side with a wide strap and feet held together with a big rubber band. ``The first scan is 20 minutes.Just lie still and breathe normally. Most people take a nap.'' It turns out that the arrangement is very comfortable. I did briefly doze off, and would have been fine with forty minutes. There is a short break and then a five minute head-scan, to see if any brain material is still there I guess. The photos are then sent to the radiologists to see if they're satisfactory. That was about fifteen minutes, still lying comfortably on the ``bed'' (minus straps and bands). In fact I asked Mark if I could stay another hour or so to nap, but that was not deemed an appropriate use of resources.

I'll get the results of both scans tomorrow. Meanwhile, my pembro symptoms have gotten worse. The fatigue has gotten much worse, to the point that I find it intolerable. Numerous naps and lie-downs per day. If I'm lucky I can get two hours of work done.

Going on walks is non-negotiable, but it's gotten a lot harder, with shortness of breath on hills that I was cruising up effortlessly before the treatment. If it keeps up like this, I will seriously consider stopping the treatment regardless of the scan results. I doubt the bone scan will show anything; that clavicle pain went away completely a few days after I talked to the onc. But I am having increasing right-side abdominal pain, which I don't think I can be explained by muscle strain and the like.

Well, enough complaining. To help make it more endurable, I came up with a brilliant idea. According to the Mad Dog Code of Honor, watching television in the morning is strictly prohibited. Well, okay, I make the occasional exception when the Seahawks are playing on the east coast. But it really it is a very poor use of time, especially for a morning person like me. One consequence of the Code is that I have never been able to watch Wimbledon live, except for one time when I happened to be in England.

Then it occured to me: if ever there was a time I could justify it, this is it. If I get up at 6:30, I'm typically having my first nap by 9 and not getting much done anyway. So a little Wimbledon, why not? I have officially given myself permission, and if anyone has a problem with that, we'll have to take it outside.

In conclusion, here's a Kaia story I recently heard from Jessie. Why Kaia was thinking about this in July, I don't know, but she came to Jessie asking whether Santa Claus was real. ``What do you think?'' Jessie replied. ``I think it's you and Daddy.'' At which point Jessie confessed the truth, and was relieved that Kaia was not upset by this. In fact Kaia had decided it's the same with the Easter Bunny and the Tooth Fairy: ``There's a pattern there.'' However, Jessie requested that Kaia not say anything yet to Finley. Kaia was okay with this, but said:

``I'm worried about Finley. What if when he's a Daddy he still doesn't know? He won't know to put the presents under the tree.''