Patience for Patient...

I slowed down a bit this week after the third infusion.  That gave me a reminder to exercise patience - there is that word again.   What follows are some personal reflections on patience and progress.

Boomers grew up in with a naive sense of the direction of progress.  I remember very clearly of DuPont “Better Living through Chemistry” or the exhilaration of JFK saying we would go to the moon or even the first time I went to Disneyland and looked at Tomorrowland. All gave us a sense of the immutability of progress and that all new things were dandy.  But sometime in the 1970s evil old Thomas Malthus re-emerged.

Malthus, you may remember, when trying to influence a parliamentary debate on the poor laws created his famous and fundamentally flawed treatise which argued that human procreation would exceed innovation.  In the 1970s you could see him all about.   Paul Ehrlich claimed in the Population Bomb that the earth would extinguish itself by the turn of the millennium, or at least humanity would be severely challenged,  When challenged by an economist at the University of Maryland - his silly predictions proved to be at best speculation.  

In the 1970s something called the Club of Rome, a group of thinkers who describe themselves as an "organisation of individuals who share a common concern for the future of humanity".  Their 1970s report mirrored many of Ehrlich's conclusions but economists like Robert Solow, to name just one, pointed out the obvious flaws in both the thinking and modeling.   A group of prominent mathematicians ridiculed the model on some fairly esoteric grounds.

Malthus’ work was wrong, in part, because he relied on bad data (evidently Benjamin Franklin gave Malthus US Census data which did not correct for population changes - the US got a lot of people coming here between our first census and when Malthus published his Treatise).  But he was wrong based on two assumptions held y lmost all  Malthusians  - first that something that is evolving can be finished (I am constantly annoyed when people assume that “the science is settled" - good science never is) and as importantly that we won’t be snuck up on by epiphenominality.   That is an awfully long economics word for what a graduate student I had in the 1980s called “Who’d a thunk it?”  Those things in life that happen unexpectedly are always outside the perfect models.

To be fair, some of the caution and thinking on limits that began in the 1970s might have been justified but as someone who believes in the power of markets, the quantity of some in this instance is very limited.

So why is all this philosophy relevant?   As I said at the opening, after my third infusion I slowed down a bit more than I had in the previous two.   That was conditioned on two points of data - one - the fluid weight gain I get when they infuse me with all that stuff did not melt away as it had in earlier infusions.  At the same time my walking on the weekend was a bit slower.

Those two data points were better this morning.  But I was also reminded by Quinlan (you will remember her) that I get some real scientific data starting next week.   The first is a pet scan (discussed in the last note) on the day before Thanksgiving which will give a picture of what is going on inside.  The second is an echocardiogram - which is another piece of data (coming in early December) to give a picture on whether the stress involved in getting rid of my disease has been appropriate.

I was never much of a student of science - so since my joining the Samuel Merritt University Board (SMU) and having this disease I have become more interested.  The image above is of the Canadian doctor, William Osler, who founded the Medical School at Johns Hopkins.   He was the guy who thought it would be a good idea for future doctors to actually have some clinical experience;   A good idea to advance medical practice. 

Soon after I joined the SMU Board of Regents the retired dean of the UC Berkeley School of Public Health recommended that I do some reading on science.   I wondered whether I really needed to being that I took an introductory course in Biology in 1964.   I asked whether things had changed a bit since then.  He indicated that they had.

He recommended two books - Siddhartha Mukherjee - the first (The Gene and Intimate History) gave a layperson’s understanding of gene theory.  But then I found The Emperor of All Maladies: A Biography of Cancer.  In that book Mukherjee gives a detailed history of the treatment of cancer.  

The book gave me two conclusions.  First, progress in the treatment of cancer for the first several hundred years was not continuous.  We went on some fairly bizarre and horrific modes of treatment.   But in the last decade progress has been phenomenal (as opposed to epiphenomenal - although some of the biggest steps forward came through after hard work coupled with good luck).   But second, as Mukerjee mused at the end of the book, the end of cancer may not be in our sight - as we whack one cancer mole - new variations evolve.

So I will wait for the real data.  Patience.

Good Things do NOT come in small packages

One of the things you get used to with many diseases today is some kind of imaging - there are MRIs and Pet Scans (quite frankly I thought it would be wonderful to send my dog to the imaging - but that is not the meaning of the term).  There is also ultrasound.

I will admit it.  I don't like small spaces.  And as I have aged I am less and less willing to be in small spaces.   In our second house (in the late 1970s - which was built in the 1920s) I actually crawled into the space under the house and installed a very early type of wiring for moving sound and video to two locations in the house (Living room and master bedroom).  The space was so small you could not turn and had to scuttle on your back to get from one place to the other.

I have a good friend in Mexico who is a retired Psychologist who has said to me "we can fix that" - but somehow I think I like being idiosyncratic.  So in theaters and airplanes I always pick an aisle seat.  And I am not likely to do anymore crawl space installations.  Luckily our current house was built on a slab.

The first time I had to do an MRI was in Mexico - I had fallen on the street by tripping on a cobblestone late one Friday afternoon.  I went to the hospital in Queretaro and was told I should do an MRI.   The MRI moves you into a small and very noisy place.  (See image above) The whole process takes about 30 minutes - I thought one way to make the process tolerable was to count on my fingers the time - 30X60 = 1800 units.  I tapped them out on my fingers which were at my side.   But even that small amount of movement made my results unreadable.   When I got back to the US I learned that one can take a form of Valium and lose the claustrophobic reaction mostly.   So for all the procedures that required some kind of imaging I simply took a couple of pills and was relaxed enough to be able to get through the procedure.

Next on my list, after my third infusion, is a series of tests which include a Pet-Scan and an Ultrasound.   Both will give my medical team and idea of whether the Chemo is working.  All of the indicators seem to be positive from energy level (one friend said my cantankerous nature has re-evolved) and blood work.    I did the third infusion yesterday - and it went well.  I usually take an iPad to the infusion - and yesterday I watched Mutiny on the Bounty - the Brando version.  It is long and Brando throughout the film looks like he has been affected by a severe bout of foppishness.   The movie ends, a bit more than 3 hours after it started with Brando saving the sextant and then getting burned in fire and then the death scene with all the melodrama he could muster.   The true story of the bounty is much more interesting (https://en.wikipedia.org/wiki/Mutiny_on_the_Bounty).

A Brief followup on Comb overs

The responses to the post on of loss of hair were wonderful.  Thank you.   Many of you came up with suggestions that I would not thought of.  The choices, while not infinite, were varied.  For example, one friend suggested a Russian Silver Fox hat.  The idea got my vote for style points - just not my style.  I declined in part because the model looked a lot like Arnold Schwarzenegger, who at one point reprised a role as Governor of California.   I always thought his portrayal of Kindergarten Cop was much more suited to his talents - without any slur to kindergarten teachers. 

There were several proposals for knitted caps and many of those looked elegant but those might have limited applicability due to the climate of California. You can actually see people in knitted caps (what the Navy calls watch caps) at all times of the year.   One person suggested I was not "ghetto" enough to do a do rag - I think that is accurate.  Then there was the suggestion from Quinlan that I get a pirate's hat.   We hunted around and found a picture taken at a wedding several years ago which showed why the pirate's hat proposal was a bit off.

I had an appointment with my lead doctor yesterday and he said, based on the data, that things are progressing well.  I can testify to having more energy and getting back to be able to do things I could not do in August.  I have a third infusion (out of six) next Wednesday and then will do an ultrasound and pet scan to confirm what is actually happening.

Then finally there was the surprise.   Someone, anon I think, sent me a wonderful knitted American Flag knitted cap which lights up - it has a lot of twinkling lights in the cap which are powered by a USB driven charger.   Thank you very much Anon - I will be wearing it when I walk Indy at night.

Comb overs

One of the unintended consequences of all that stuff buzzing through your body when you are doing chemo is loss of hair.   I've spoken with a couple of cancer patients who claimed that theirs came out quickly.  Others suggest a gradual process.  In my own case hair loss has been gradual.  Although about a week after my first infusion, I was taking a shower and washed my hair and saw a clump of my hair in my hand.   For the next couple of days my pillow looked like I was shedding.   

Then it slowed down - my hair turned a bit whiter and what I noticed was that the widows peaks I've always had grew a bit more intense AND on the sides it grew a lot thinner.   I was amazed even with that there was a lot of hair left.  According to one source the average head of hair has something in the range of 100,000 follicles and you normally lose about 100 hairs a day. So getting it all might take some time.   When it begins to look ratty I will probably shave my head.

I began to read up on the linkage of hair loss with chemo.  It turns out one company claims that if you cool your scalp down significantly you will stop the hair loss - they claim the hat (basically a gel filled hat you wear during the infusion which has been frozen) shrinks down the follicles and thus no chemo enters.   The testimonials seem to be mixed.  So I think I am not going for that solution.

At some point I suspect my hair will be gone.   That does not bother me.  Friends who have had the same problem found that  hair (mostly) recovers after the end of chemo.   But there is an interim problem - being a former long distance runner I can testify that when running in weather below about 60 degrees, it is a good idea to keep your head warm.  So I always ran in the winter with a navy watch cap or the equivalent.   With that in mind I am looking for something to cover my head while I am WH (without hair).

The picture at the top is of a football skull cap - with an American Flag design. Patriotic, but I do not want to make a political statement - either for or against MAGA.   As you look on the Internet - these things have a wide range of options - some have ties in the back - some do not.  My oldest grandson wears one when he plays football (Named this week as one (I believe the one) of the best defensive linebackers in his league) - he seems to favor either Black or White and without the ties.   His goes under his helmet.   These things look a lot like an old fashioned DO-RAG - which is closer to the ones with the ties in the back.

I have a strange history with skull caps/do-rags  - related to the major skull cap influences in my life; George Nagy and the Pirates of the Caribbean.   George Nagy was a Hungarian mechanic who escaped his native country in 1956 and lost an eye in the uprising.  He was the guy who taught me carburation.  In college, one of my hobbies (brought on by the kind of cars I bought) was trading cars. For about 2 years I arbed cars, mostly British, with George, who had a small shop in Santa Monica.  British cars at the time had two characteristics - Lucas Electrical systems (from the guys who invented darkness) and SU carbs (which were devilish to adjust).   When I got a Morris Minor - George taught me how to adjust the SUs.  Normally you would use a vacuum gauge to check adjustment on the twin carburetors - George could do it by just listening AND instead of taking 5 minutes - which it would take me - he got it done almost instantly.    George never seemed to change clothes including his black (I think it was not originally that color) Dunlop cap.   As to the Pirates, in one of the scenes on the ride there is a guy who is wearing a do-rag while sacking New Orleans.   I am not sure why that image always comes to mind but it does.

Quinlan bought me  the LA Dodgers Watch Cap (which I honestly thought might be useful in the prep up to the WS - alas wait til next year, yet again...)when I go out in the early morning or late evening - and that keeps my ears warm too.  But during the day I think I need something different.  The ones worn while running were knitted.  Not the look I am going for.

So I am soliciting some help - for ideas - what kind of cap should I get?  Explain your choice.   If I get a really innovative suggestion I might even pop for a modest prize.