Steps with Determination(s)

There were several developments this week.   First, I got a haircut.  Not a big deal?  Since my last one was in the summer I was looking a bit like a cross between the Great Quillo and Howard Hughes in Vegas without the nails (as a former wrestler I have always kept my nails short). (My God this blog spends an inordinate portion of its writing on personal grooming)  After my last haircut, my former barber -  who owned a one chair shop near our old house in Curtis Park, decided to retire.  He had cut my hair for almost 40 years, precipitously decided to retire at 82. (i think the events were coincidental not causative).  My new barber, who is in the Fair Oaks village, thought that after the new haircut I looked somewhat like Steve McQueen.  If so I want the Mustang from Bullit. The first picture is of one of my favorite chickens in Fair Oaks - which is a rough representation of what my own hair looked like before the haircut. 

On Thursday I had one more acupuncture treatment, My regular acupuncturist was gone and thus his associate was there.  She chose to put the sounds of waves crashing against the shore,   Part of the rhythm of acupuncture is to offer contemplative music,  I find that distracting because it seems to be an endless loop of almost distinct toons.  I keep wishing the music would finish a phrase but it never does.  I found the wave sounds dandy.

Then there was the visit with my Oncologist.   As is the practice I have a visit with him to go over the numbers coming from the most recent blood test and to prep for my next infusion.  I am a numbers guy so I always have a list of questions about the numbers.   He thought things things like my “Mean corpuscular hemoglobin concentration determination” and my “Hematocrit determination” are mostly hunky dory.  (Not a medical term).  Believe it or not, in the spreadsheet I keep to record the numbers, I have put short definitions to remind me of the various meanings of “determinations”.   I feel a bit like an Economist at the WH Economics Council - I think there are 20+ stats to track - but it comes down to four key indicators;  hemocrit determination (volume percentage of red blood cells), lymphocyte percentage (white blood cells), platelet count (blood components that determine clotting) and white blood cell count (which are part of your immune system but which Chemo destroys).

We also discussed next steps. As the cards are today, here is what we know.  I do the fifth infusion on Boxing Day, the day after Christmas.  Then sometime in January I will go back to Stanford for a consultation with the Stanford team - just to see if they concur.  My doctor here thinks two sets of eyes are better than one.   That is refreshing.  Many doctors would not think this step necessary.

At this point there are probably two options - assuming that everything is positive after my sixth infusion and a third pet scan I will be cleared as being in remission.   If there are still signs of the little buggers then I will do two more infusions, delaying my return to Mexico for another six weeks.  Obviously, I would prefer the first option.  Preferences count for little here; I am fully prepared for the  second shot should it be necessary.

This is our first Christmas in the house that we moved into several years ago.  I had forgotten how grey Sacramento is at this time of year.  Friends in SMA say this December has been cold and grey there too.  Last December, it was cold.  You learn that in houses that are primarily stone and which have no central air or heat, it can be cold.   Our house, until the most recent remodel, which was completed last week - had only unvented gas fireplaces - which require you to keep a window open when using - and thus are not really useful for heating a house.   One of the things we did in the remodel was to add a vented gas heater in our bedroom.   But the first two weeks of December in Fair Oaks has been wet and cold.  I know friends in the midwest think cold is 40 or 50 degrees less than I do - but as a native Californian, 35 degrees is cold.

As with all things, there are good signs too.  This morning, as always, Indy and I were out and beat the coming rain. Sacramento is expecting wind and rain and snow at the higher up elevations. Then it started to rain seriously on the way to our 7:30 service.   You might ask why we go that early; for one reason I hate crowds.  For another, Quinlan then goes to her water aerobics class. As we were walking into church (by this time Indy was back in the house and dry) the rain cleared momentarily to be able to see a double rainbow.

I am a big rainbow fan.

One final comment - this morning at St. Paul's San Miguel the knitting ministry, of which Quinlan is a member, offered some prayer shawls for blessing before distribution.   For the last several years Quinlan has been a yarn mule - bringing a special kind of yarn to SMA for her various knitting projects (she is a member of two knitting groups).  One of our friends proposed to include Quinlan in the blessing and thus connected via FaceTime - isn't technology wonderful?

Markers

A marker for me is one of those things we all collect and leave behind which are important enough to either save or to forget to throw away.  The odd thing about these markers is that generations from now - someone may be looking at those markers and trying to decide what type of person you were.

A few years before I retired I began a project which has been in the fits and starts department for now more than a decade.  It will be, if ever finished, a note to our five grandchildren explaining five principles which have guided me for most of my life.  

I was named after a relative who came to California on the Sloop South Carolina in 1849.   The photo is of the receipt that he got for passage (around the horn) for the sum of $250 (almost $8400 in today's dollars).  He left a series of letters but only lasted in Sacramento for about a year, succumbing to a burst appendix.  The letters were intermittent and one aunt spent a long time deciphering the writing so they could be transcribed.

Growing up, my mother's family had an attraction to family stories - my father's not so much.  But both sides collected markers.  When I started to check out the realities of these stories I found that many lacked key details and modified some facts.  For example that Civil War hero that mom's side spoke about (Uncle Billy) was not such a hero. But that got me thinking (obviously when you read the rest of this, not very hard) about doing a book on the five principles which have motivated me in life and then applying both some theory to the principle and some family stories which fit the principle.  I’m pretty sure the readship for such a tome will be quite limited but with E-books that is less of a problem.  There are plenty of characters in my side and Quinlan's side of the family.  The principles are straight forward and I use them frequently if not daily:

• Economic allocation (allowing individual consumer choice) is almost always better than political allocation (allowing politicians or bureaucrats to make choices for you)
• Individual achievement is something we should encourage
• The history of America is exceptional and we should celebrate that unique status
• Life is full of surprise and we should be prepared for them (epiphenomenaltiy is everywhere and likely to be there when you least expect it).
• Values do count, live yours, but do not be so tied to yours that you cannot recognize the value of others

I've done some research on both my ancestors and their stories and on the principles and their origins and am not entirely steadily making progress on defining the five chapters - illustrated with family photos and stories.  

The Jonathan Archer receipt(above) is one of those markers.  It has gotten me to think about my ancestor who went to California on an arduous trip.   His letters, written on thin paper and on both sides are hard to read but tell the story of his progress on the ship and in California. Life in California in 1849-50 was neither simple not pleasant.  There were no PG&E blackouts but there were also no miracle drugs, no internet, no computers, no flights and the food quality was uneven at best.

This week I got what I am sure will be another marker.   Last Friday, I did a PetScan.   On Monday I got the results.   One of my physician friends, after reading the report, said it was about as good as it could be - all indicators are heading in the right direction and several issues in the August scan have been resolved.  Before my fourth infusion on Wednesday I did the usual blood work and again, all the numbers are in the right direction including red blood cells in the normal range for the first time in several months.

But, understanding what I have found in our own family stories, I am also a bit afraid of another potential marker.  In 1972, I was included in the Volume Outstanding Young Men in America. Normally I am skeptical of these kinds of recognitions.   I once had a friend in DC who worked for HEW but signed himself up on the attendance sheet of some interagency meeting as Deputy Assistant Secretary for Aircraft and Sewage and within six months began receiving invitations on Aircraft and Sewage issues.  But I filled it out anyway and was included and got the certificate (suitable for framing).   In 1973, I got a solicitation from H. Pettus Randall III (who I had met in Key Club when I was a Lieutenant Governor) which invited me to nominate an outstanding young man that I knew - so I nominated Alfred F. Katz, who had a PhD I Seafood Processing and he an his wife Susie were active in Zero Population Growth (they, as you may have guessed were our two cats at the time) - and in the 1973 edition Alfred got the Citation. The thing like many honors in our culture was a sham - a way to sell books so that winners could see their names therein.  So not all markers are the same but the one from Sutter is certainly a keeper.

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.

Dogs versus Treadmills

Right before Quinlan and I left DC I began a routine of working out in a gym, owned by a friend across the street from our apartment in Southwest.  That evolved when we got back to California to consider competitive running.   One of my brothers was a good long distance runner in high school and college and for at least one year I ran for my high school cross country and track teams.  Competed is probably not an apt definition - I think I still hold the PVHS record for the slowest 1320 ever recorded.  In my last two years of high school I wrestled - it was much more to my tastes and interests.

The return to California got me to try long distance running again.  I eventually evolved to compete in both Marathons and Ultras (more than 26.2 miles).   But then I tore tendons in my ankle and it ended my racing.  I tried competitive cycling, but it was not the same.  One of the delights of running is that you don't need much equipment and you can pretty much do it anywhere.   After the injury I have tried to incorporate aerobic activity into my daily routine.  For the last 30 years that has mostly been in a gym with a treadmill or an elliptical machine. With the advent of the iPad one can dispel the monotony of these kinds of machines.

As mentioned in an earlier post I am currently excluded from my gym because of a compromised immune system, part of the process that chemo is trying to repair.  And while I try to walk every day with Indiana (Mentioned Previously) there are days when he or I don't want to go out for very long. So this week I purchased a Treadmill.  (Author's note this is one area where being penny wise is foolish).   The differences in machines in the commercial grade are mostly on features but many of the home treadmills are terrible.

The purchase got me to thinking about the relative merits of each as an exercise companion.   The value of the dog - or simply walking is that you are in touch with your surroundings.  You get the sun in your face and car fumes.  An additional benefit is that the dog seems to sense when you don't feel like going fast, so he slows down.   The treadmill doesn't care how you feel - it is after all a machine - well calibrated, but unfeeling; an insensitive task master.  But one benefit of the treadmill is that if you don't use it for a day it won't poop in your house.

The first workout I tried on Friday, which was at a level I did in early summer, proved a bit too much.   There is an old rule about aerobic activity - if you can talk when you are doing something you are improving the oxygen efficiency of your body.   There are certainly times for anaerobic activity - especially when training to improve speed.  (Which I am not doing right now.)

So I will have to evaluate when and how to use each over time - Indy certainly does not like to be out in the cold.  This morning at 6 it was in the mid-40s and he was not all that enthusiastic about feeling the wind in his face.  For that matter, nor was I.

This is going to be an ongoing investigation, mostly likely with a mix of options depending on conditions outside, Netflix and Amazon Prime offerings and what strikes my fancy.

Va con dineros

One of the things you learn with this disease is that some days the best thing you can do is create a spreadsheet.   I've kept all my medical bills so far and so have a pretty good record of what things cost - or do I?

As I read the 30+ invoices I have received since I started talking to doctors you see some interesting numbers; each bill has five lines.

1. Amount billed by provider
2. Amount Allowed 
3. Medicare Paid
4. Amount paid by Supplement carrier (in my case Blue Shield)
5. Patient Responsibility.

As someone who has spent a lot of time thinking about cost structures in colleges and universities, I admit to being baffled.   Here are my numbers at this point -

1. Amount billed by providers - $76,641
2. Amount Allowed  - $16,727 (22%)
3. Medicare Paid - $13,366
4. Amount paid by Supplemental Carrier - $3,362
5. Patient responsibility - $1,650

So if the numbers are correct the payment is about 24% of the amount billed.   The most expensive part of my co-payments came on a surgery bill to implant the port - where I will be billed $1,087.   One other thing struck my eye - the rate of payment off the billed amount varied widely.  The highest percentage so far has been over 60% the lowest just .32% of billed amount.

I am not in any way griping about the money I have been asked to pay.  What intrigues me is that rarely in this process have I been presented with a real consumer choice like how much more effective is one procedure over another?  The place where it did show was in a set of blood tests that a physician ordered where I was asked to pay for all of the tests (evidently they are not in the Medicare list of covered services).

I understand discounting in higher education.  Some private colleges and universities offer 50%+ discounts to make their first year classes.   But an almost three quarters discount is hard to comprehend.

I asked my nephew who works in health care consulting and he confirmed that the first number is made up - and that between Medicare and the supplemental carriers the amount paid is based on ultimately negotiated schedules.

Tomorrow I go for the second infusion.  We will see how that goes.

LIMITS

Some might say this is something I should have learned earlier in life but one thing this disease offers you in lessons is there are limits.

Consider this.  Last night we went to our younger grandson's baseball game (The Fair Oaks Mudhens are, at this point, in Fall Ball, undefeated.   And when you get to 11 years old the players actually have pretty good base running sense.   So the games are fun.   Last night was a Fall night for Sacramento so I brought a warm Fleece and a blanket.   Even though it remained in the 60s - I found I was cold even with all that extra clothing.  Not uncomfortable, but cold.  Also after sitting out there for a couple of hours I came home a little tired.   Yesterday was a good day and I had a lot of energy to do things - but after sitting in the relative cold - I was done for the day.

Tonight our older Grandson is playing in Woodland about 45 minutes away from us.   We thought about going to the game.   He is having a superb senior year - tonight in the first several minutes of the game he had already racked up a couple of tackles and a fumble recovery.   We love watching him play and hope that some Division 1 team will give him a shot next year.   (Did I say he is also a good student and a terrific older brother?).   (Linebacker and highlight films available.)


But technology came to our rescue.   Our son and his family live in an area of Sacramento called Orangevale - and through a livestream called Orangevale Live you can see the games in real time.  Orangevale Live is a Facebook area with lots of local videos including the Casa Roble football games.  Since 4K video is now inexpensive and light - a person can take a hand held to the game and shoot it for those of us who could not get to the game. The livestream also has insets when a member of the team does something good like a tackle or a fumble recovery (Did I mention he wants to play Division 1 football next year?). With SMS to our son - it was almost like being there.  

At the half Casa was way ahead of Woodland - but it is a real joy to watch the game from home.   And to begin to understand that even without my disease I could think about not believing I am 25.

Needles and Lists

About a week before my second infusion (October 23)  I have devolved into a routine.   Since the first one I have begun to understand that energy levels diminish after the infusion and then recover - so I am in a recover mode at this point.  That allows me to walk a bit more - listening to a book on Howard Zinn the fraud historian who wrote the "People's History of the United States" which distorts almost everything in American history.   But the routine has also allowed me to do some more searching on the Internet about my disease.

You cannot be sure about the level of energy on any day - so some times I spend part of the day simply working at my computer and walking with Indy very slowly.   On better days I walk more and spend less time at the computer.

Our pharmacy is Walmart and they are good about sending reminders to refill prescriptions.   This morning when picking up one I had a nausea one also which I chose not to fill - the copay was more than $300 (made me a bit nauseous just looking at the price).

Last week I found an article about Acupuncture and Lymphoma and today I visited an acupuncturist in Fair Oaks.   The literature suggests that these sessions could have two beneficial effects - reducing bone pain and improving both my immunity and my energy levels.   I've been to two previous acupuncturists but I liked this guy better than the other two.  He is a lot less new age than the other two. Treatments are an odd experience - you lie down on a table and he sticks pins in you at various median points in the body.  You then nap for about 50 minutes.   You repeat those treatments about every 10 days.  The first experience was positive.

But then there are the lists.   Lots of my support group have made suggestions about diet, sleep, fun things to do, books I might like and lots of other things.   I read them and then try to categorize them - hence the lists.  I've gotten some dynamite recipes including a yellow tomato soup with pesto.  That is supposed to appeal to people who have lost their appetites.  (Which, thankfully I have not done.)

One other gift I have gotten - as most of you know I chair the board of Samuel Merritt University - a month ago I decided to step aside temporarily in part because we are in the middle of a capital project of major proportions.   The interim chair is the a physician who does not have a propensity toward financial issues - so I agreed to continue to participate in meetings related to finance issues, by phone.   The project is about the biggest thing SMU (not the one in Texas) has done in its 110 year history.  But the total cost is huge. ($310 million)  We need to find a new campus because our current Oakland one is undergoing some major changes for the hospital center that houses us.  By the way if any readers have an extra $50 or $100 million to contribute to the new campus - please contact me directly.

College presidents are known to have "edifice" complexes.   The best example in my experience came from a friend who was a Santa Clara graduate.  BT Collins was all sorts of things in California- the original leader of the California Conservation Corps, an investment banker, State Treasurer, and a member of the Assembly.   He was also a disabled war veteran - he wore a prosthetic leg and an old fashioned hook on one hand.  (indeed in one note he wrote to me he signed it as Captain Hook).   BT was always grateful because the Jesuits recognized his potential and encouraged him, after military service, to attend college and then law school.   One of his mentors was Fr. Paul Locatelli - at BTs funeral Paul expressed admiration because in all the jobs he held after college BT sent 10% of whatever he was making to the University.   When they rehabbed the law school Fr, Locatelli asked BT if he wanted to fund a capital project.   BT said of course - "let me do the urinals - it is where I did my best thinking in law school."

One of my Stanford doctors described me as "analytical" - so the lists I guess make sense.  But even if that were not there it would still be a way to organize those days when I don't have energy.

More on the First Infusion

Two Steps

Yesterday I completed my first session of Chemo.   I went home and took my Prednisone (which is the P in R-chop).  Today I went in for a booster shot to build my white blood cell count - part of what the therapy tries to do is to break down and rebuild your white count.  So the shot today is precautionary - they don't want that count to get to dangerous levels.  The more I see this process it is fitted to the patient but not exact - so they are constantly measuring and adjusting to see what works.

I gained a little weight (that was from the Prednisone and all the fluids I took in) - last night as a result of all that I slept better than I had for a month or so.  When I walked Indy this morning I felt like a weight had been lifted from my chest.

Tonight, my lead doctor called in to see how things had gone.   The followup on my team is amazing - this afternoon I got a call from the lead nurse.

As I understand the cycle a couple of days after I finish the round of Prednisone - my energy levels will regress to where they were and then gradually build up again to when I have the second infusion on the 23rd.

Indiana has become my pace dog - when I feel crappy he finds lots more reasons to slow down and sniff for stuff or mark territory - when I feel stronger - he matches my pace.  He is the canine part of the team.

First Treatment

Response to Anticipation

Today was my first day of Chemo.  It was a long one - it started at 8 AM.  They took a series of blood tests (in essence to see baselines especially on white cells) and then started with the Rtoximab - which takes about three hours to infuse.   They use a special needle to pierce the Port and then let the bag drip in until it is done.

Evidently, by now, they understand that pushing toxic materials into someone will cause nausea - so they seemed extra protective of making sure that did not happen.   They did two separate infusions to guard against and evidently the Prednisone also helps as does an oral prescription to use at will.

Last night when I had the final meeting with my Hematologist in Sacramento (before the procedure) his nurse recommended eating a "hearty" breakfast.   I did one of Emily's famous (mint, ginger, banana, date and almond milk - with some blackberries thrown in) smoothies and two whole grain waffles.  That seemed odd to me but evidently the new advice seems to be spot on.

One thing which struck me was the diversity of the crowd.  That should not be surprising in California.  But the mix of people in the clinic was diverse on age, ethnicity and gender and all sorts of other variables.   One of the youngest patients was brought in by his father (I think he was about 20 - and he seemed depressed).  He ultimately never looked at anyone in the clinic.  Others were chatty.  One person next to me was finishing his round of Chemo today.  There are several rooms and the morning session was full to the brim.  Oddly, I got some consolation from seeing the crowd - there were a whole lot of people who looked in worse shape than I - and a couple of looked better.  (Including the guy whose final treatment was today).

The drip is a gravity feed except for a couple which were forced in.  The whole process was painless. They have recommended a topical ointment to use before the next port infusion to ease pain - I am not sure I will use it - I have had so many needles stuck in me over the last several months that I am almost immune.

It was also recommended that I bring a couple of things - water - need about 3 liters a day around the treatment plus snacks and ice chips - one of the chemicals (Cytoxan) has some pretty nasty effects including mouth sores so they recommended the ice chips.   For some reason I could not get my iPad movies to play correctly.  I will work on that before I have to go in for a long day near the end of October.

One other comment about this process at this point.   Dr. Advani (the Stanford Specialist) commented to me last Wednesday that I was a very analytical person.   I have appreciated that with each specialist I am now using from nurses to doctors - they spend a lot of time explaining things and then responding to questions.

Tomorrow is a shorter appointment and then a follow up on the 10.  This seems like a very well monitored process.  The second session of infusion is scheduled for the 23rd.

Anticipation.  

As we learned in Gone with the Wind - tomorrow is another day.  On Wednesday I start Chemo.  The first appointment takes about six hours.   I am not sure what to expect.  The nurses give you some instructions and then they start pumping stuff into you.

I was told to bring a blanket and something to entertain me - so I will have two iPads with a bunch of movies preloaded.   I will ask have some snacks - they said good idea after a "hearty" breakfast.  I did some pretty politically correct snacks - dehydrated banana slices, sesame ginger cookies and Creme Brûlée Almonds.   Plus water and ice chips.

I have spoken with friends who have had Chemo and they have a wide variety of responses many have gotten through the process with a couple of bumps.

I will give you a post impression when I am done.  And then perhaps record the expected drop in energy when the White Count drops over the next couple of days.

I had a good talk with the Stanford Fellow.   We did a Petscan on Friday last to see if there had been any deterioration since July when I had the first Petscan.  There has been some deterioration so they have, with the concurrence of Dr. Lalchandani, to go from RBustamine to RChop.


The bracelet was a gift from my oldest brother Dan who spent a career as a doctor.   It is pretty elegant and may even have some therapeutic value.   Like the Waterford bowl - it was very much appreciated.

The regime at this point is to do a total of six treatments ending in Mid-January - no flying and no booze until then.  As one friend said - at least they don't cut out coffee!

On the trail of Lymphoma– (Early October, 2019)

This space has been redesignated.   I originally thought I would use it for putting down some thoughts on the state of higher education – as an addition to my consulting practice.  And some of that may still be present in my personal website.  But things have taken a turn.    In the late Spring, after we returned from San Miguel de Allende, I began to go through a series of tests for Anemia.  In the space of a couple of months – I was poked and prodded by a couple of different kinds of physicians.   I had so many blood tests that at one point in July my right vein looked like I was a heroin addict.   In addition, I had a Catscan, 2 Petscans, a Colonoscopy and Endoscopy, a MUGGA and an ultrasound and even a lymph biopsy.

My symptoms are pretty simple – I fatigue easily and doing all sorts of simple tasks is more complex than it was a year ago.

All came to the conclusion that I had developed some form of Lymphoma (there are lots of types).   At the end of September I got an infusion port installed in the anticipation that I would begin chemo-therapy.  Also at the end of September I went to the Stanford Lymphoma Clinic for an evaluation by their world class specialists.   My two days at Stanford were amazing.  The two doctors I met with and the other members of the care team were excellent.

The definition of what type of lymphoma I have influences the type of treatment I will get.  Both the Sacramento and Stanford team came down to two variations – R-CHOP (which is made up of a monoclonal antibody -Rituximab (Rituxan), three other chemicals (cyclophosphamide,doxorubicin hydrochloride and vincristine (Oncovin, Vincasar PFS) plus a steroid – prednisolone) and RB (Rituximab, Bendamustine) which is considered to be a bit more gentle.

The second Pet Scan I had at the end of September confirmed that I was a better candidate for R-CHOP.   In the next few days I will begin to get infusions – which at this point are supposed to be six sessions (one every three weeks).  At the end of the first couple of rounds they will do a recheck to see if the medicine is helping to regress my symptoms.

One of the things I am enormously grateful for at this point is a large and diffuse support network in the US and in Mexico.  It is truly gratifying to hear support from a wide range of friends and associates.   Last week, after Stanford, our daughter compiled notes and sent it to a list of more than 50 people.  I am wary of overwhelming those friends with details.   So I thought it would be a good idea to set up this URL in my site and then simply send it to all the people on the list – if you want to follow my progress – I will try to post a couple of times a week – so simply bookmark the URL and check in.   Comments are always welcome.

One other comment – one thing a disease like this offers you is a better understanding of gratitude.   My sister Nancy recently presented me with a Waterford container with a series of thoughts and prayers which she had collected from many of the friends I know.  Each was transcribed on origami paper.  I keep it near me in my office at home.