On being a father: early influences

I'm going to take a break from writing about cancer and death. I want to write down some memories---happy memories, with one exception you'll see below. The posts in the series won't be connected in any way; they will be on completely different topics. (I say ``series'', but this will depend on my ever-dwindling energy level.)

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ON BEING A FATHER: EARLY INFLUENCES

If I were to be asked ``what was your greatest accomplishment in life?'', I would answer without hestitation: Raising my two wonderful daughters, Jessica and Abigail. Needless to say, this was a joint project with my equally wonderful wife Wendy, who I think of as being as close to the perfect mother as a mother could be. Equally obvious is that Jessie and Abby themselves deserve the credit for being who they are today. I do take proud credit for my contribution, however. In this post I want to talk about three things, all dating back to teenage years, that influenced my fathering philosophy.

1. The biggest early influence on my parenting philosophy was my father, via the horrifically bad example that he set. When I was seventeen, I swore a solemn oath that I would never be like my father and that if I had children I would do exactly the opposite of what he did.

My siblings and I felt a combination of fear, loathing and outright hatred toward him. I can remember as far back as age 9 being overjoyed whenever I heard that Dad was going on a long business trip. Two weeks without Dad! It was like Christmas.

When were living in Brussels (I was 13), I founded the ``We hate Dad Club''. For a time we had a system of secret signals to alert the others that Dad was coming.

First of all, he was constantly critical of all of us. You weren't pulling the weeds up by the roots. You weren't sweeping the floor correctly. You missed a spot washing the car. You didn't speak up properly at the dinner table. When I first moved out and was living on my own, I remember a time when I was sweeping the floor and suddenly realized: Hey! I can sweep this floor any damn way I please! I even deliberately missed a spot in the corner just as a symbolic way (admittedly rather juvenile) of getting back at him. He had a way of making the simplest chores a form of torture. To this day I can't stand being criticized.

He was also prone to outbursts of irrational anger. Woe to the child who spilled a glass of milk or accidentally scratched the furniture. He might fly into a rage and berate you for you carelessness and incompetence, even if it was an accident that could just as well have happened to an adult. In a few extreme cases he could be unbelievably awful. Once he was upset with Jan's table manners, and made her eat the rest of her dinner on the floor, out of the dog's dish. Another time Ken was walking around barefoot in his bedroom despite the fact that a number of tacks had gotten scattered over the floor. Dad warned him (sensibly enough) to either pick up the tacks or put on some shoes. He didn't, and sure enough stepped on a tack with a bare foot, with painful results. Now any halfway normal parent would just comfort the child, as the lesson was now learned. Even a gentle form of ``I told you so'' would be appropriate. Dad's reaction was that Ken should have ``stupid'' written on his forehead.

Dad was a dyed-in-the-wool sexist of the old school. A woman's purpose was to get married, and if she worked in the meantime, there were only three suitable jobs: nurse, secretary, and teacher. When Jan was accepted into graduate school, she needed money and out of desperation asked Dad for a small loan. He refused, saying that she was just ``educating herself out of the marriage market''. Clearly no man would marry a woman with a Ph.D. Just as clearly, choosing not to get married at all was inconceivable.

I could continue with such examples indefinitely. I'll mention just two more, much milder in nature but still illustrative of Dad's totally misguided approach to life and to raising a child. On one of the rare occasions that I asked Dad for help with a math problem (I think this was around ninth grade), I was quite puzzled as to why my method hadn't worked, and wanted to find out where I'd gone wrong. Dad's dismissive response, in his characteristically authoritarian tone: ``Let's not look at the WRONG way to do it; let's look at the RIGHT way to do it.'' Utter cluelessness. In mathematics and probably many other fields, some of the most productive learning experiences and greatest moments of enlightenment come from understanding one's mistakes. This is as true for professional mathematicians as it is for ninth graders. Surely even a father who didn't understand this fact would still try to answer a direct question from his child. Not Dad.

The second incident was much later in life. By age 20 or so I had reconciled with Dad, and we were on friendly terms. He still regularly produced his usual Dad-isms, but I would just ignore them. Moving ahead a decade, we were having dinner at my sister's house in Boston, when Jessie was about two months old. Dad was there too. Jessie was asleep in a little basket upstairs, but close enough of course that Wendy and I would hear her if she started to cry. In the middle of dinner she did start crying, and Wendy and I immediately jumped up to go get her. ``Somebody's going to get spoiled,'' said Dad in his smug sarcastic way, drawing out that last word. As usual, I just rolled my eyes and ignored him, all the while thinking that this one of the most stunning displays of lack of self-awareness I'd ever witnessed. Did he not realize how ridiculous this made him look? Dad, what the hell do you know about raising an infant? Absolutely nothing. As I understand it, he never even held his own children when they were babies. Furthermore, it is not possible to ``spoil'' a two-month old baby. An infant has only one way to communicate, namely to cry. They can't tell you what they need. All they can do is cry, which I think of as the baby saying ``I'm very unhappy and I wish I could tell you why, but I can't.'' You don't know why the baby is crying, and you need to find out, a fact that apparently was lost on Dad. Once when Jessie was five months old or so, she was crying and crying and we could not figure out why. Well, she was wearing an old-fashioned cloth diaper held together with safety pins, and it turned out one of the pins had come undone and was sticking into her leg. We felt terrible. I still feel guilty about it, although Jessie appears to have fully recovered from the traumatic experience.

To sum up, my vow was to be the exact opposite of my own father. Give your children love, compassion and respect. Give them freedom to grow, to learn---including from their own mistakes---and to follow their own dreams. Encourage and support them. If they are girls, given them some extra support to help neutralize the insidious forces of sexism arrayed against them. Most of all, love them.

2. At 17 I read A.S. Neill's ``Summerhill'', which had a major influence on my life. I think I've mentioned Summerhill earlier in this blog, so I'll just give a minimal outline. Neill (1883-1973) was a Scottish educator who founded an unusual boarding school called Summerhill. For us today, the mere concept of sending a child to boarding school is unthinkable, but in Britain at the time it was very common and considered perfectly ``normal''. At Summerhill there was absolutely no requirement to attend class, do homework, or take exams. The school was governed collectively by all students and teachers. At school meetings the vote of a six-year old carried the same weight as the vote of the headmaster, Neill. When visitors expressed skepticism that this could really be true, Neill would invite them to a school meeting where they might see Neill's own proposals voted down by the students. Here at last was the philosophy of freedom to learn and freedom from authority that I'd been looking for.

Thinking about the application of this philosophy, it became clear to me right away that it would be impossible to duplicate the full Summerhill experience elsewhere. First of all, Summerhill was not just a teaching philosophy but a way of life, with the boarding school aspect as an integral part of it. Second, the entire enterprise was heavily dependent on the personality of one man. In later years, as a teacher and as a parent, I would never have said ``let's run all our schools like Summerhill''. It wouldn't work. In the home, raising children, one could use much more of the Summerhill method. In any case, the important thing to me was the spirit of Summerhill. The freedom to learn is just one part of it. Mutual respect is another. Yes, children should respect their parents. But it goes both ways; parent must respect their children. To this day I have kept the spirit of Summerhill within me.

3. In retrospect I consider myself very lucky to have had the experience of baby-sitting the four Hooker children: Cindi (9), Linda (7), Danny (5) and Kim (3). I was fifteen and had never thought of a career in baby-sitting, even at the attractive wage of fifty cents an hour. Jan had been doing it for a while, but at some point had a time conflict or just wanted to move on. So the Hookers (who lived just down the street; Cindi was a friend of Victoria's) asked me at the last minute. For at least a year I would babysit every Thursday evening while the parents went to choir practice, plus the occasional Saturday when they went out on a date. For whatever reason I was a big hit with the kids.

The first thing I learned is how fun and how gratifying it is to be greeted at the door by a little gang of jack-in-the-boxes, bouncing up and down with excitement yelling ``Steve's here! Steve's here!''. Other learning experiences were quite unexpected. On one of my first evenings little Kim went poop by herself on the toilet. But before she flushed it down, she insisted on dragging me into the bathroom to view her creation, as though it were a rare work of art. She was so proud and excited. Now, this kind of thing is not exactly on the radar of a teenage boy; I was quite surprised by it. Little things like this got me to thinking about early child development from a new perspective.

I also learned (this is well-known to all parents) that once you do some funny story or trick, they'll want you to do it every time.

I began an alternative to story-reading at bedtime that the kids dubbed a ``Funny Show''. This involved gathering some of their stuffed animals who then go off on various adventures and misadventures, acted out with the animals and various funny voices. For example, the good animals might defeat the nefarious Dr. Drooley-Trashit by splatting mud in his face, to the great and prolonged hilarity of all. From then on, there was a constant chorus ``Do a Funny Show, do a Funny Show!'' Before long I started running out of good material, but the great thing about little kids is that they're perfectly happy with re-runs, and even seem to prefer repetition.

Standing in Danny's doorway, about to turn out the light, I tried to settle him down a bit by singing some verses from the then-current ``Mr. Spaceman'' by the Byrds. (Those of a certain age might remember the chorus: ``Hey, Mr. Spaceman, won't you please take me along, I won't do anything wrong''. It's a catchy tune.) Naturally, from then on it became obligatory. ``Sing Mr. Spaceman!'' No doubt it was partly just a stalling tactic, but he did seem to really enjoy it. Finally the light would go out, I'd close the door and breathe a sigh of relief, only to hear a plaintive little voice from Linda's room: ``Ste-eve...I'm thirsty''.

I gained experience in dealing with the many trials and tribulations of the little ones. Danny was quite nearsighted, and needed glasses to be able to watch TV. One day his favorite program---a cartoon involving dinosaurs, as I recall---was about to come on and he couldn't find his glasses. The poor little guy was distraught, pleading with me in heart-rending tones ``Steve, find my glasses''. The key is to be sympathetic, but at the same time remain calm. Danny, I have no idea where your glasses are. Can you help me find them? Can you think of where you last saw them? We did find them, just in time, and a terrible tragedy was thus averted.

On another occasion we were all watching an enjoyable cartoon movie called ``Gay Purree''. It features various cats living in Paris, including a male and female kitty who are in love. They somehow become separated in the big city, and are unable to find each other. I was startled to find Linda crawling up onto my lap, sobbing inconsolably: ``Steve, will they ever see each other again?'' I held her in my arms and reassured her that yes, I was quite certain that they would. I remember this incident vividly, not just because it surprised me but because I discovered how rewarding it is to comfort a distressed child and transform tears into smiles.

Like just about all children, the Hooker kids did have their moments as exasperating, misbehaving little delinquents. Putting them to bed could be very difficult, and certainly tried my patience on a number of occasions. When I was desperate, I would resort to threatening to call their parents. If the behaviour persisted I would pick up the phone and start dialing random numbers, provoking a panicked chorus of ``Nooooo! Puhleeeez! Don't, we're getting in bed!'' It was pretty funny really.

Needless to say, baby-sitting once or twice a week is in no way comparable to actual parenting. But it did give me some practical experience. It had a big influence on me, partly in subliminal ways that only later came to the surface. I discovered that I really liked small children. It opened my eyes to the joys and complications of child-rearing. It gave me an up-close look at how those high-sounding principles of love, compassion and respect were going to be sorely tested at times. Still, in a small way, I did actually love the little guys.

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All of these things had a major influence on my thinking about fatherhood. But when it came to the real thing, when our beautiful daughters were born in 1982 and 1984, there was a new factor that dwarfed all others: my wonderful wife Wendy. We worked extremely well as a parenting team. Just look at the results, and I rest my case. Even today we still sometimes look at Abigail and Jessica, pat each other on the back, do a couple of high-fives and say to each other: Didn't we do GREAT?

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.''

Infusion no. 2 and other diversions

I had a triple appointment yesterday (three and a half hours, with breaks): blood draw, then the oncologist, then infusion. The oncologist meeting is to go over the results of the blood draw and to discuss any side-effects I may be having. The levels of a certain enzyme associated with the liver are again high, even higher than they were before. As to side-effects, the concerns I expressed in previous posts were certainly overblown (I must sheepishly admit, baa baa). The most prominent of these is fatigue---more on this below---but there doesn't seem to be anything you can do about it. I've had some stomach upset too, but not too bad. Then you start wondering: gosh, I'm out of breath walking up this hill; is it the pembro or am I just out of shape? However, when I mentioned to the onc that I'd done a nine-mile Father's Day hike with Jessie, he kind of laughed and said he wouldn't worry about out-of-breathness.

The other new development is that I've been having various pains on the right side of the abdomen. My theory is that these are due to too much tossing the grandkids around and/or some of my blackberry hacking, both of which could stress rarely-used muscles. But since the right side is where the liver is, it seemed a good precaution to mention it to the onc. In particular, I've been having some weird pain in and around the right clavicle. The onc suggested two possible cancer-related explanations: First, the tumor in the liver could be pressing on the bottom of the diaphragm, which can cause pain---so-called ``referred pain''---in a completely different area such as the clavicle. Second is the worst-case scenario of cancer spreading to the bones. For that reason he wants me to have a bone scan.

Personally I think this is all a very expensive wild-goose chase; I'm guessing it's just some kind of muscle or ligament tear resulting from carrying around garbage cans filled with heavy weeds. On the other hand, I've had so many blood draws, CT-scans and infusions that I'm getting bored with them, and it will be interesting to undergo a new test administered by Nuclear Medicine (that's really the name of the department!). They inject you with something, I think radioactive waste from the Hanford Reservation, then you sit around for three hours to let it fully circulate (into your bones, I guess). After that they scan in some way. It will be interesting to see. Oh, I just got some new information: For the scan part you're supposed to drink lots of liquids and then lie flat on your back without moving for one to two hours. Yeah, right. I could also walk upside down on the ceiling while juggling seven hedgehogs and playing Rachmaninoff piano sonatas on the kazoo.

By the way, I was wrong about the first infusion being a half-dose. I was sure that's what they told me, but I was certainly pleased to learn that the second dose is the same as the first. Tom and Dana were there this time. Alway fun to see them.

Back to the fatigue: Sometimes I feel like I need to lie down every two hours. But I did the 9-mile hike, and of course remain true to my motto: If you don't feel like going out for a walk, you should immediately go out for a walk. Today for instance I did a double-hiller in the park. Although I felt fine during it, by the time I got back to the house I felt ready to collapse. I've discovered though, my motto notwithstanding, that it's best not to fight it too much. It seems ridiculous to lie down for a nap when I just had one two hours before, but it makes the fatigue manageable. Surprisingly, I'm even getting some good work done. Although I've been a total has-been in research the last few years, I'm actually writing a paper with my student (``The Duflot filtration in equivariant topology'', if you were dying to know). We'll probably submit it to a top journal such as Quilter's Corner or The Bass-Fishing Almanac. In any case, it's nice to feel I'm doing something again, modest though it may be.

The most exciting recent event was Mikayla Weissman's wedding. I could write a whole blog about that, but I'm running out of steam and will just say: Beautiful wedding. Beautiful bride. Amazing family. Amazing friends. Wonderful!

Pembro report: so far, so good!

My first pembro infusion was a non-event, as I more or less expected. I hope it continues to be uneventful!

Both of my previous Nurse Practicioners have moved on to other jobs, including alas Sarah the opera fan. The new one, Lisa, is not an opera fan (which surprised me because I thought this was a prerequisite for working in the urology clinic). Lisa has experience with pembro, although mostly with melanoma and lung cancer. She was very positive about pembro being a low-impact treatment. According to her, the most common side-effects in order of frequency are (1) fatigue, (2) dry, itchy skin, and (3) diarrhea. Many patients, she says, continue whatever they were doing before with no problems. Excellent! I can return to my plan of one-upping Alex Honnold, who's gotten a lot of press for his recent free-solo of the ``Freerider'' route on El Capitan. Oh come on, he rehearsed the route with a rope multiple times before going ropeless, and took four hours to do it. And it's only 5.12D, what's the big deal? My plan is to do it on-sight, at night, in under forty minutes.

The immunotherapy infusions are shorter and simpler than the chemo. First I go to the urology clinic where Deanna ``accesses'' my chestport and takes out a couple of gallons of blood for testing. Or maybe it was three teaspoons, something like that. At the first withdrawal she remarked ``oh, this is old blood''. Excuse me? Whose blood are you calling old! It's an hour 30 min. appointment, and although it doesn't take quite that long, it has to be done as a sterile procedure and that drags it out a bit.

Up in 8th floor southeast, I was disappointed not to see any of the old gang besides Rose. Tom, Dana, Glen, et. al. were all off travelling or otherwise enjoying themselves, the nerve! My infusion nurse was a new one (new to me, I mean) named Alyson. She's about my age, I think, and just got back from a bicycle vacation in Italy, in the region around Torino that we visited last September. She even speaks a little Italian, so that was fun. Like me, her first foreign language was French. After college she worked as a nanny in Paris for a while, and told me this story: In the US she often donated blood. Afterwards they give you a few crackers and a cup of orange juice. She thought ``why not donate blood in France as well''? So she did, and afterwards got a complete lunch with choice of red or white wine, followed by a sugar cube dipped in cognac.

The infusion part of the appointment was under two hours. They start you with a half-dose, then in three weeks decide if you can tolerate a full dose. So far, so good...

Had a great time at the Mariners' game last Sunday. Of course, it's always fun to be with the Brown family, but also we had great seats and it was a good game (2-run homer by Cruz, spectacular catch in left field by Powell...). It amazes me what a long attention span Kaia and Finley have for these games. For some time now they've both known how to read the scoreboard, and Finley keeps up a running commentary: ``It's looking good, guys! Runners on the corners, only one out, two balls and no strikes!''

In any case, there really isn't that much to report. No news is good news!