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.