Tom Faranda's Folly

Follow-up to RICE #2 in-patient chemotherapy - and the future plan

So, I am finished my out-patient and in-patient chemotherapies – the preliminaries! Now I get to gear up for the “high dose chemo” with an autologous stem cell transplant. (By the way the word “autologous” is not in the microsoft word dictionary – I just had to add it.)

See here for the logic of this course of therapy, why the transplant is needed, and how long I may be hospitalized.Tom Faranda's Folly: Latest Meeting with the Lymphoma Guru

However – in the build-up here’s what is happening:

I started today 14 days of injecting myself with an extremely expensive drug called Filgrastim (also called Neupogen) designed to “mobilize stem cells from the bone marrow to allow them to be collected.”  The total cost for this medication is - sit down – over $8,000. And I am administering it to myself in three shots every morning. The insurance company should pick up the whole cost, minus a $40 co-pay. 

On December 6^th I see the transplant Dr. Kew Alrmani, down at Memorial Sloan Kettering in Manhattan.

On the 7^th I get a red blood cell booster shot at the MSK branch in Sleepy Hollow. 

On the 8^th I’ll have a “stem cell collection” starting at 8AM at MSK in Manhattan. Dr. Reich, who will do this, introduced herself to me as the “Vampire Dr.” This takes about four hours – hope I don’t have to go to the bathroom!

On the 12^th I will have CT and PET scans, again at MSK in Manhattan.  I had been having the CT at Phelps and the PET at White Plains hospital but will have these at MSK, unfortunately starting at 4 in the afternoon, so that will be a late one. It’s also Brigid’s birthday!

On the 15^th I will see the Lymphoma Guru, Dr. Zelenetz, who has been the primary guy through this whole thing, determining the course of therapy.

I will probably need several more stem cell collection sessions, since it usually takes about three to get enough cells. (Not always; with luck just one session!)

When I weighed myself Monday night after returning from the 48 hour, two night stay at MSK, I weighed 1661/2, up from 158 Saturday morning before I went in. It’s all fluid from the chemo. Last night I went to the gym, felt good (20 minutes on the bike, good weight session and stretching) and my weight was already down by over three pounds. Of course, I’d been up half the night running to the bathroom to wee. And ditto last night, so I am sure my weight will be down another 2 –3 pounds. The same thing happened after the first RICE in-patient session three weeks earlier.

MSK gve me a bunch of "Patient Information Fact Cards" as well as four brochures to read. I am working my way through them but so far no surprises. I have been prepped really well by the physicians and staff.

Latest read - this past weekend in Sloan Kettering

I put aside Barbara Tuchman’s “The First Salute” which I have been enjoying, since I didn’t feel like schlepping in a heavy hard cover book for the weekend. Instead I did another re-read. This time, John Paul II’s great encyclical “On the Hundredth Anniversary of Rerum Novarum”.

Rerum Novarum was the encyclical letter written in 1891 by Pope Leo XIII on labor and the rights of workers. A very important document in the development of Catholic thinking on these issues.

So JP II took the opportunity of the 100^th anniversary to write this fantastic encyclical (92 pages long, in the small pamphlet sized style these are printed in – it takes about two hours to read carefully), reviewing Church teaching on social justice, private property, the state, and culture. One of the chapters is entitled “the Year 1989” reviewing the fall of communism and what he thinks it means.  And – he is very critical of secular trends and consumerism in the West. 

It was probably the third or fourth time I read this encyclical letter, and it is really one of the great works of John Paul’s pontificate.

Here is a much-quoted section from the letter (the start of section 43, on page 62 of the Daughter’s of St. Paul edition):

The Church has no models to present; models that are real and truly effective can only arise within the framework of different historical situations, through the efforts of all those who responsibly confront concrete problems in all their social, economic, political and cultural aspects, as these interact with one another. For such a task the Church offers her social teaching as an indispensable and ideal orientation, a teaching which, as already mentioned, recognizes the positive value of the market and of enterprise, but which at the same time points out that these must be oriented to the common good. This teaching also recognizes the legitimacy of workers’ efforts to obtain full respect for their dignity and to gain broader areas of participation in the life of industrial enterprises so that, while cooperating with others, and under the direction of others, they can in a certain sense “work for themselves” through the exercise of their intelligence and freedom.

Rugby - All Blacks do the "Grand Slam"

This past Saturday the New Zealand All Blacks completed the “Grand Slam” defeating Scotland, 29-10 at Murrayfield (the Scottish home ground). It was an incredible year for the New Zealand National team – which means an incredible year for the Country of New Zealand, who take enormous pride in their rugby. If you’re interested see here for my comments earlier,  Tom Faranda's Folly: New Zealand 23 - England 19 and here for a good article on their accomplishments this year.A special year for All Blacks - International - RugbyHeaven

NYT article - Link between stress and cancer?

Well, probably not. Here's the article - fair and balanced. this link may only be free for a week. If they ask you to register with the Times, it's free and easy. Is There a Link Between Stress and Cancer? - New York Times

Note - if you cannot access the article, leave a comment and I will email it to you. I archive these articles by cutting and pasting into an email.

Home from Sloan after RICE #2

Well I am back home Monday night. Judy Anderson picked me up this evening. We left Sloan a few minutes to 6 and I was back home by 7 o’clock.

About the only thing that varied from the first RICE session, was that I needed red blood cells. My hemoglobin was down to 7.1. Normal is 12-14, but in chemo patients it does dip down. When it goes below 8, that’s the trigger for the transfusion. So I got the cells this afternoon.

Thanks to Connie, Caroline, Luce, Deirdre and Barbara, on the nursing staff, for taking good care of me. Especially Connie, who was my day nurse on all three days (purgative experience for her!) and gave me a good lesson on the shots I’ve got to give myself over the next two weeks.

When I got home I’d planned on the gym, but realized that I was a bit tired and it would be better to hang around with the boys anyway. Tim and I did take a quick hop to the gym to weigh ourselves. I’d gained eight and a half pounds since Saturday morning before I went to Sloan. It’s almost entirely fluid, from the chemo (same thing happened the first time around) and should be gone in about five days. Same thing can’t be said about Tim, who’s now up to 108 pounds! We have to do something about that. Tim will be nine on Decmenber 9th.

Upcoming schedule is a bit busy as I prepare for the stem cell transplant. Will journal on that tomorrow.

Here's a scary workout routine

Herman Edwards, the 51 year old head coach of the New York Jets, must want to start playing again! (Maybe not a bad idea, considering the way the Jets are playing.) Here's his personal workout routine "Just for my health." He starts it at 5 am and it takes 90 minutes. Edwards is 6'2" and weighs 195 pounds. Plenty of NFL coaches look like they never turn down a meal and haven't run 20 yards in the past 20 years

THE ROUTINE

Monday and Thursday: Run 45 minutes at a seven-minute-mile pace. Upper body: Three to four sets of weights focusing on chest and triceps (bench press; decline bench; pec/dec machine; tricep extensions). Leg extensions and leg curls and 25 sit-ups with a 25-pound ball between sets. Stretch.

Tuesday: Sprint workout. One mile warm-up followed by 16 sprints of 110 meters. Three to four sets focusing on back, biceps, shoulders (military press; upright row; arm curls; lat pull downs). Squats, and 25 sit-ups with a 25-pound ball between sets. Stretch. 

Wednesday and Saturday: 20-minute outdoor run and 20 minutes running backwards on the treadmill, followed by 20 minutes on the stationary bike. Three sets of 10 to 12 reps of pull-ups. Three sets of 15 bar dips; about 150 push-ups, and 25 sit-ups with a 25-pound ball between sets. Stretch.

Friday: One mile warm-up followed by 16 sprints of 110 meters. Three to four sets focusing on back, biceps, shoulders (military press; upright row; arm curls; lat pull downs). Squats. 25 sit-ups with a 25-pound ball between sets. Stretch. Alternate sprint workout: Run hard 30 seconds on the treadmill at an incline of 8.0 then recover 30 seconds. Do 16 repeats.

Sunday: Rest day during the season

In Sloan Kettering for RICE #2

Well, as scheduled I am back for the second (and last) RICE  in-patient chemo. Took the train in, and then grabbed a taxi from Grand Central. I didn’t want anyone to drive me in, because I presumed traffic would be awful.

But the reality was - traffic at least in the city was very light. The taxi driver said business was bad all day. “Look at the streets” he said, and he was right – light traffic and few pedestrians. “Maybe tomorrow will be better,” he concluded. I guess he figures everyone will be returning to NYC tomorrow. I took the 12:27 out of Croton, and walked into Memorial at 1:29.

The routine this afternoon and evening is identical to the first time. Draw blood, sit around and wait, “we need a twelve hour urine.”  I got one of the three RICE drugs (along with other IV meds for nausea) and the IV will now run all night to “hydrate” me. IN fact, the IV will run continuously until late Monday afternoon, as I get the various meds.

I will definitely avoid the tooth brushing with prep H mistake I made the during the first RICE protocol – Tom Faranda's Folly: Midday of RICE, day 2.  - I left the tube home. The only other tube I have besides the travel tube of Crest is Desenex, and it’s a nice, bright yellow!

Here’s a picture, taken by Caroline, the night nurse, around 9PM. I like this picture, because it makes me appear to have more hair than I’ve really got.

Thanksgiving Picture

We had our Thanksgiving meal at the old homestead in Ossining, where my mother, and brother Phil, along with Phil's wife Ann, and their three children (luke, Catherine Sophia, and Gregory) live.

Here's Tim on the left, soon to be nine, and Joe, twelve, with Catherine (turns two in January) in between them, doing her thing. Tim (the football player) is hanging on!

NYT on "Best in Gym"

Here's a kind of interesting article in the NY Times on what "10 experts" feel are the best all-around cardio macines.Best in Gym - New York Times  This link will only be free for another five days or so. After one week the Times archives their articles and you have to pay to see them. You may also have to register with the Times, but registration is free and easy.

Latest Meeting with the Lymphoma Guru

Brigid and I met with Dr. Zelenetz at 9:30 this morning and he laid out the upcoming plan.

My second and last RICE chemotherapy is this weekend. I will then be injecting myself with Filgrastin, a medication designed to “speed the recovery of white blood cells after chemotherapy has been given”. I will do that for eight days following the chemo.

A few days after the injections are completed I will have my stem cells removed by a Dr. Reich. I met her today (she introduced herself as “The Vampire”). She decided the cells could probably be harvested by IV through my veins – I wouldn’t need a new catheter installed. Dr. Reich wasn’t happy with my left arm, but said it would probably go OK.

My already installed port can’t be used because it only works one way – going in – and they need a system where the blood is taken out, sent through some machine and (I believe) centrifuged to get what they’re looking for – and then returned to me.  So I’ll have large IV’s in both my arms – a blood going out IV, and a blood going back in IV.

The date for this is not settled – but probably around the 8^th or 9^th of December. Around that time I’ll also need CT and PET scans, and I have another meeting scheduled with Dr. Zelenetz on December 14^th.

I am slightly anemic. This certainly contributed to my tiredness in the gym while doing cardio. So I will receive another red blood cell booster shot, Darbepoetin, in two weeks, on Dec. 7^th. I had received this med with my prior chemo’s and this is the first time I will get it outside of a chemo session.

Dr. Zelenetz reviewed the rationale for the stem cell transplant. He said that 99.99% of the cancer cells would have been destroyed by the chemotherapy protocols. It’s the remaining “hardy” cells that are targeted by the one week of “high dose chemo” and “these are the tough cells I’m interested in”. As a side effect, this also destroys my immune system. Hence the need to rejuvenate the immune system by returning my own stem cells to me.

The high dose chemotherapy runs for one week. Then it takes 7 to 10 days for my immune system to be rebuilt. But Dr. Zelenetz reiterated that the hospital stay could be up to four weeks. H was pretty emphatic about that.

The hospitalization date for this is not set. It usually is about two weeks after the stem cells are harvested. This would take us to just before Christmas. I am hoping they'll hold off until just after Christmas!

After our meeting, I received the first part of RICE – the rituxin. As I’ve mentioned, rituxin is supposed to “set up” cancer cells for the chemotherapy. This is the only time I’ve actually gotten an outpatient treatment at Sloan Kettering in NY, and it was the same sort of reasonable experience I’ve had receiving chemo in Sleepy Hollow. I also got an injection of Darbepoetin.

I will never complain. The girl receiving chemotherapy in the lounge chair next to me was 23 years old.

Medical care and medical costs

I got two bills today. One was for almost $22,000 from Memorial Sloan Kettering for my six day stay there. That was in July, for Nephrotic Syndrome. (Digression: this was caused by my lymphoma, and the triggering event for my current chemotherapy.)

The letter with the three page bill said “your insurance carrier has paid $0.00.” And then, please send us a check, we take mastercard, etc, etc.

I called Aetna to see what was up – I knew payments had been delayed, because I’d neglected to send them an update confirming that they were our only medical insurance. 

I got through to a customer service rep quite quickly (at lunchtime on a Monday, that is quite miraculous!) and told “Denise” what I’d received. She laughed and then said, “We sent out a check on 11/17. You owe $500.” I asked her how much Aetna had paid and she said “$10,200.”

So while Memorial Sloan Kettering is not in the Aetna network they do have some sort of “preferred discount” arrangement, which is evidently about 50% of what MSK bills.

This is called “Managed Care.” I always presumed that the in-network cost discount to the insurers was about 40%, so I wasn’t far off on that.

And Aetna had been (very rightly in my opinion) arguing that the sixth day in MSK was unnecessary and they shouldn’t have to pay for it.  I don’t know who won that argument. Itwill be interesting to find out.

The second bill was for my recent PET scan at White Plains hospital, which is a member of the Aetna network.  I had received an earlier bill for $3,300, but it said “we are submitting this to your insurer.”

On the second bill, it said Aetna paid $900, the Aetna “contract discount” was $2,300, and I owed $100.

A reduction from $3,300 to $1,000. That’s a 70% reduction. More “Managed Care.”

This is how providers (hospitals, etc) are currently pricing their “product.” There is a high “retail” price and a lower “wholesale” price, and it seems that very few people pay “retail.” The insurance carriers negotiate their arrangements. If you are poor, the hospitals accept medicaid. The only people who pay “retail” to MSK are wealthy people and celebrities who go there because of it’s worldwide reputation.  In fact the 19^th floor at Sloan Kettering is the “celebrity” floor, with special arrangements for security, privacy, etc.

This is very interesting to me because under the category of “financial advice for business owners”, I am an insurance broker providing medical coverage and employee benefit plans for about two dozen different companies. For several of these client companies we use Aetna.

By the way, the “retail” price for a semi-private room at Sloan Kettering is $1,940 a day. That’s just for the bed and spaghettioes (and the nurses; can’t forget them!). Everything else (Dr’s, medicine, tests, bloodwork, etc, etc, etc) is extra.

But nobody pays “retail”.

Fatigue update and coming week schedule

I finished the first RICE chemotherapy protocol on November 7^th, and now 13 days later, I still feel a bit fatigued at times. Again, nothing dramatic, at times just a bit lethargic.

And I am feeling it in the gym. My weights program is the same as when I started chemo (Sept. 6^th, 2 and a half months ago!), but my cardiovascular capacity is way off. And I don’t need any sophisticated test to figure it out. I get winded a lot quicker then before the RICE therapy. With the RCHOP therapy - the previous chemo protocol - by the time the two weeks had passed between the CHOP's, I was back to normal on the bike and ellyptical trainer. Not with the RICE.

I presume my red blood cell count is down and that’s the cause. On Wednesday I will see the lymphoma guru, Dr. Zelenetz, and find out for sure. Seeing him is part of the schedule for RICE. We meet, he tells me I’m OK (hopefully) and I get the Rituxin treatment (The R in RICE) after the meeting. Then Thursday is Turkey Day. On Saturday, back into Sloan Kettering for the ICE part of RICE, identical to RICE #1 and takes about 48 hours. I will get out Monday afternoon or evening.

As with RICE #1, for RICE #2 one of the staff will take a picture of me (in those spiffy hospital clothes), and I’ll put it on the laptop, and then post it to this journal. Why not? It’s tedious sitting around a hospital with constantly running IV's and posting a picture from a hospital bed gives me a feeling of technological accomplishment (even though it’s very easy). Sounds idiotic (and it is) but also true.

New Zealand 23 - England 19

Looks like I got it just about right last evening on my prediction,  Tom Faranda's Folly: Predicting New Zealand v. England match tomorrow  proving I know more about rugby than baseball  Tom Faranda's Folly: Yankees - this year's team of Destiny?

For more on the game hit this link –

Thursday night "Out with the Boys"

Yesterday had a good day. After an early morning parent-teachers meeting regarding Tim (it could have gone worse) and several hours in my office, I hopped MetroNorth in the early evening to meet up with about 20 ex-rugby playing friends. I’d had two short rests, late in the morning and late in the afternoon.

The rendezvous was at Pete’s Tavern on Irving Place and 17^th St. Really my first social engagement on my own since starting chemo. The place was mobbed (east side, Thursday evening at 7:30, kind of figures) with mostly “kids” in their late twenties, early thirties. My first thought was “A great place for someone with a weakened immune system to hang out.”

I felt fine the whole time. Three glasses of pinot noir, a large plate of pasta, and good cheer with guys I’d known a long time – some (Paul Flanagan and Bob Piazza) who were two years ahead of me at Fairfield, and another (Bill Connolly) who I got to know in 1973 after I’d graduated and started playing with Essex, the rugby club he co-founded.

It would be  boring for most readers to mention the other “luminaries” there, but will give a thank you to Bill Deerin (excellent player! with many games for the Met Union All-Stars at flyhalf) for organizing the night.

So, we all missed Bill Buckley’s 80^th birthday party at the Pierre, but I suspect we had a better time. 

Predicting New Zealand v. England match tomorrow

With my journal prediction track record - see - Tom Faranda's Folly: Yankees - this year's team of Destiny? a hearty display of modesty is in order.

That said, I think the rugby match between New Zealand and England tomorrow will be closer then predicted. This is because: A) The All Blacks appear to be over-confident, B) England is playing at home with 75,000 screaming supporters, and C) the best New Zealand forward (#7 Richard McCaw) has withdrawn from the match due to injury. 

Whereas I had thought New Zealand would win by about 12 points, without McCaw I think it will be around 8. They really appear overconfident. Especially since earlier in the week New Zealand was awarded the hosting of the 2011 World Rugby Cup. They really think their you-know-what is ice cream.

But it's still difficult to see how England could win. Maybe if one of the New Zeland players was sent off for foul play and the England had a man advantage for the whole game? Maybe then. Otherwise it's hard to see them scoring, except through penalty goals.

So Ithink about 28-20 to the All Blacks, with the try count three to one. I am a great fan of New Zealand rugby, so I wouldn't mind seeing them thrash the Poms. Just don't think they will. Still, a win is a win and I think it will go New Zealand's way.

Tenth day after RICE #1

While the chemo fatigue has not totally lifted, it certainly is much lessened. After two days of no gym (time pressures), I went last evening and felt pretty good. Of course, this was after a pretty big nap, having traipsed around Westchester and over to Northern Jersey for most of the day!

The ENT lady, Dr. Zeitlin, has put me on a bigger dose of Augmentin for my sinus infection. The regular dose helped, but the infection is still there – so she upped the dosage for the next ten days. It already – after a day and a half - seems to be effective.

The benefits of exercise

Good article in the Washington Post. A Daily Workout Could Add 4 Years to Life, Study Says

You may have to register to read, but it's free.

My friend Tom McCarthy sent me a book

More on the book in a moment but first a digression – who is Tim McCarthy? Another former rugby player, who I first met in 1981, when I returned from four years living in the Caribbean. I re-joined my NY based rugby club to find Tom had absconded with my first side position.

Tom was fast and cunning, and when he tackled you, it was important that your major medical be up-to-date. 

Well, I gilded the lily a little bit in that last paragraph.

RICE #1 day eight follow-up

Chemo fatigue is lifting. Sunday afternoon when I went to the gym, things went much better than my Friday visit - when I struggled for 12 minutes on the exercise bike, and did about half my weight program. I rode the bike for 20 minutes - 14 at level nine and 6 at level six - and did my standard stuff on the weight machines (took more then my usual 40-60 seconds between sets, however).  And I felt good Sunday night.

Then on Monday I worked early for about two hours, and then felt zonked out at about 9AM. So I took a rest, and eventually got to the office in the afternoon and felt fine.

Today off to see the ENT doc in the early afternoon - sinus infection better but still a bother. Otherwise a regular work day as we get out paperwork for client RMD's (that's required minimum distributions) from retirement plans and IRA accounts. Pretty pedestrian work, but it's got to be done.

So I think I'm out of first gear and into second, or maybe third. Will see how it goes in the gym later today.

A little more on Peter Drucker

Here is a link to the Wall Street Journal editorial about Peter Drucker. Unfortunately the WSJ is a paid subscriber site, so the link may not work without the secret handshake stuff.  But give it a go, it's worth it.WSJ.com - Drucker on Everything 

And here's another link to an opinionjournal piece on Drucker. It's a selection of writings from various articles he wrote in the Wall Street Journal, going back to 1975. OpinionJournal - Extra  You may have to register to get on this site, but it's free and easy.

The excerpts only give a partial view of the many insights he had into business, management, and the human spirit.

Rugby and New Zealand

If you've read my little bio above, you know that I've had a long attachment to rugby football. In fact I played rugby with a guy who has recently been much in the news.  Tom Faranda's Folly: I played rugby with Patrick Fitzgerald

I understand that most people could care less about rugby, so to avoid tedium, only hit the link just below if you are interested.

The NY GOP

Good article in the NYT this morning about the NY State Republican Party. State G.O.P. Divided by Ideology and Rivalry, Officials Say - New York Times  Of course this is what happens when the guy at the top (Pataki) lacks any core values.

RICE #1 Day six follow-up

Well I certainly don't want to go out and run any sprints, but I think chemo-induced fatigue from last weekend's RICE protocol, may have bottomed out on Thursday-Friday. Friday afternoon I went to the gym. The plan had been to ride the bike for 14 minutes and then do the weight session - modified based on how I felt. On the way over I thought "I'll ride the bike for 12 minutes - it's just a warmup for the weights anyway."

So I started on the bike  - and had to dial down the resistance level from nine (I usually set it at nine or 10 - the top level is 12) to six after three minutes! And a few minutes later to four. I just had no puff at all. It''s like the body could not get out of first gear. I finished the last couple of minutes at level six. Incredible the difference between what I could do on Friday, and what I did last Friday!

The weights went OK - I only did some work on the chest press machine, some abdominal work, the back machine (very important - using this machine the last two years has almost eliminated my chronic low back pain!), and some leg extensions. Eliminated the other stuff. Weight work is easier than cardiovascular work for me right now - I just take longer between sets.

When I got home, I felt better.

Then yesterday morning (Saturday) there was definite improvement. I was in the house the whole morning anad toyed with the idea of going to my office for an hour or so - and then talked myself out of that. Instead I took an afternoon nap.

After the nap, the four of us headed out to a birthday party for my goddaughter, Mary Margaret Brusstar, who will be one year old. When we arrived Laura, the goddmother, and Laura's parents were already there. It was a great evening, with a sit-down dinner (neither my son Tim, nor Mary Margaret's older brother Joe are very good at sit down dinners!) and with Laura charming the pants off my two little boys.  I have known Kathy and Dan Brusstar for about 14 years. In fact I knew Kathy when she was Kathy Thompson and worked part-time for me in Manhattan. She likes to say that her job description with me was answering the phone, typing four words a minute, and reading The Wanderer.

We stayed for about four hours, and I felt fine the whole time. The wine probably helped.

This morning I feel better still, but no way can I go out and do any real physical exertion. I am going to the gym later and will try and improve on Friday's sorry performance.

The Dalai Lama

Today's NY Times had an op ed by the Dalai Lama on the interplay of science and religion.Our Faith in Science - New York Times

Peter Drucker

It's possible that not too many people have heard of Peter Drucker, but he is a very influential business and social management theorist. He died yesterday at the age of  95. Besides working in the business arena, he consulted with many not for profits. Here's his NYT obitiuary, which is worth skimming. Peter F. Drucker, a Pioneer in Social and Management Theory, Is Dead at 95 - New York Times

Nap time

Spent the better part of today in CT, chauffeured around by my assistant/associate Judy Anderson. Decided to take a short cut through Port Chester (how smart was that?), which added half an hour to the trek back, and got stuck behind a fresh accident on the Taconic Parkway.

A good thing we’d arranged for Judy to drive because, no question, the RICE has slowed me down. After getting back to the house around 3 o’clock, I did not go to my office; just checked my email and decided a short nap was in order.

Guess I needed it – nap-time ran from 3:45 to 6:45! 

And I am going to pass on the gym tonight. And will probably have to take a miss on an early evening engagement tomorrow that I’d love to get to .

First RICE chemo - 48 hour follow-up

When I started on RICE, it was suggested that it was a bit tougher than the prior RCHOP regimen. But if I tolerated RCHOP well, I wouldn’t have too much trouble with RICE.

Well so far RICE does seem to be tougher. This morning, less than 48 hours after finishing RICE, I did feel fatigue, similar to what I’d felt with RCHOP. (for a little information on chemo-related fatigue, see this post Tom Faranda's Folly: Exercise, Cancer and Chemo.) With RCHOP it was about five to ten days after the chemotherapy sessions when I started to feel mild fatigue (this is the period when your cell levels are at their lowest), and then I was fine for the next session. The chemo sessions were two weeks apart.

So it’s possible that I’ll move beyond the mild fatigue stage with RICE and get to uhhh, what? Moderate fatigue perhaps. I only have one more RICE session, and not for another two and a half weeks.

Despite the mild fatigue I did go to the gym. Biked for 20 minutes and then did the weights (with a slight reduction and spent a little more time between sets). I figure, get the sessions in now, so if I can’t do the gym later, I’ll have gotten something in!

And just to be safe, I also got a prescription for Zofran filled (an anti-nausea medicine). Just in case. I had no nausea with RCHOP but want to have something in the house since I have felt a little queasy.

I am going to put up a post looking back on the first ten weeks of chemotherapy  in the next couple of days.

How I voted

Yesterday there was an election in Westchester County, NY for three county-wide offices, as well as judgeships, etc. I voted on two (or was it three?) different lines, and did one write-in. I did not vote on any of the major party lines - Dems or Repugs - and haven't in years. I have differences with the NYS Republican Party, which are dwarfed only by my profound differences with the Dems. The only major party candidate I voted for was Bob Astorino (lost for County Executive), and I voted for him on the Conservative line.   

Here's a very good article from today's NY Times on the Bloomberg mayoral victory Democrats Are Locked Out of City Hall for 4 Straight Terms - New York Times. You may have to register wth the Times to read it, but it's free and easy. Of course, Bloomberg used to be a Democrat. Jumped Parties when the Dems wouldn't let him run for Mayor.

Here's free advice to the Dems, as I quote my own email to a few people this morning:

"I would never vote for Bloomberg in a million years. But unfortunately it seems to me that his political approach, "ultra-progressyve" on social issues like abortion, combined with a free-market  based economic plan, and a practicality when dealing with issues, is the way forward for the Democrats (politically anyway, if all they want to do is win).

Funny that Bloomberg had to jump parties -" 

The vote for NJ Governor broke down this way: General McCllelan 52.7%, Abraham Lincoln 47.3%. Of course that was in 1864. I guess New Jersey's always been a Blue State.

RICE #1 Finished and home from Sloan

I got home this evening at about 6 o'clock. The RICE infusion went well - without a hitch. But it was a bit weird to have a running IV from 4:30 on Saturday to 4:30 on Monday. And most of that time with medicine being infused. Beside getting chemo Saturday into the evening, I was getting chemo from Sunday morning at 11, until almost literally before I left (didn't waste any time getting out of there!). Brigid picked me up and we got out of Dodge pretty quickly, with a smooth ride back to Croton.

Thank  you to Denice, Aimee, Ivana, Colleen, Melissa, and Veronica, who all took good care of me!

Went to the gym at 8 o'clock this evening and had a good session. Want to get in as much gym as I can before the inevitable fatigue slowdown in five to 10 days.

Latest read - "The Secret Identity of the Beloved Disciple"

Is actually a re-read of a book by the title of “The Secret Identity of the Beloved Disciple.” It is about the identity of the author, or at least the source of the fourth Gospel, the Gospel of John. It was written in 1992 by Joseph A. Grassi , and I probably first read it about ten years ago.

I took more time reading the second time around - it’s only 127 pages – and it is a very good book. It does not require any great knowledge of the bible or the New Testament.

The authority behind the fourth Gospel is the mysterious figure of the “Beloved Disciple” and nowhere in the Gospel is he referred to as John. This was a hypothesis offered in later centuries, partially to put the fourth Gospel in the apostolic tradition.

Grassi builds a painstaking case, as he ID’s the “Beloved Disciple” not by name, but rather by his background. The 14 short chapters have titles like “The Role and Community of the Beloved Disciple, The Mother of Jesus and the Beloved Disciple, Disciple of Love and Model of Relationships (this chapter also a fascinating analysis of the role of Mary Magdelene), A Mystical and Creative Genius”.

While coming up with a reasonable case for the Beloved Disciple’s background - and of course that is all it is, a reasonable case, it cannot be proved – Grassi of course is also touching on the importance of the fourth Gospel.

It’s really a fine, fine, short book, which unfortunately is very difficult to get Amazon.com Used and New The Secret Identity of the Beloved Disciple Joseph A. I give it four stars out of five (I am a very tough marker). The original cost was labeled $7.95, and I suspect I got the book off a discount table for only a couple of bucks!

Midday of RICE, day 2.

An eventful - and funny - AM. First I go into the bathroom to brush my teeth (and pee – the constant IV, you know) with my small traveling tube of Crest. I start brushing and the toothpaste tastes funny – very funny. I thought “how old is this stuff?” And look at the label to find I am brushing my teeth with the small traveling tube of Preparation H (brought along just in case…). Hope that’s the worse thing that happens today.

I went down the hall to get some coffee (along with my “tail”, the IV stand) and met another patient – Josh. We got to talking and I told him about my toothpaste mis-adventure and that I would probably post it. He then told me he’d started his own web journal. He’s actually having the same chemotherapy – ICE – but for a different lymphoma. Josh is 22. When I get the link I will put it here.

Got breakfast, but before I started Dr. Owen O’Connor, the lymphoma attending physician this weekend, dropped in. I remembered him for my July stay and he (he said anyway) remembered me. I told him about the toothpaste adventure and he said “well at least you didn’t put the Crest up your butt” which I hadn’t thought of. On more mundane level, he answered a few questions (including agreeing with Dr. Zelenetz on the dumbbell thing ([see post below]) and then re-started the Bactrim antibiotic. I had gone off it last week when I started the Augmentin for my sinus infection. I will be taking the Bactrim three days a week, prophylactically to prevent chest infections.

I then went down to 10AM Mass on the first floor. Got there at 10:02 and they’d already started. I thought, “this will be a quicky – we’ll be done at 10:30.” (I was off by 13 seconds). There were a total of 13 people at the Mass. I’m sure I recognized two people from going to Mass in July – a woman physician and a lady who takes communion to patients. 13 attendees is an incredible number for an institution with several hundred patients and hundreds more staff on a Sunday. Incredibly bad. Of course “The Church” (or whoever) doesn’t do much of a job of advertising the Mass or time. None of the staff on my floor (where the patients are mostly ambulatory) were sure what time Mass was. When I went to the front desk and asked, the staff was in the process of calling for the time, when I found the schedule on the sheet labeled “Patient Recreation Department.” Priests from the nearby Dominican-staffed parish of St. Catherine’s celebrate the Mass.

So now I’m back, checking my email, while the chemotherapy has just started.  It entails three different drugs and will run for about 27 hours.  So I hope I’ll be discharged around 4 o'clock, Monday afternoon.

More to follow later. I am reading a really fine book by Barbara Tuchman and will post about the latest book I finished a couple of days ago.

The start of RICE

Well I’m in Sloan Kettering as I post this, and finished with the first of three infusions of Eutoposide. This is the E in RICE and I will be getting this all three days I’m here. Tomorrow I get Carboplatin, as well as the start of a 24 hour infusion of Infosfamide. I suppose the 24 hour infusion is the reason RICE can’t be given on an outpatient basis. I will have an IV running continuously from now until I leave late Monday afternoon, even when I’m not actually having the chemo.  I don’t think I’ll be getting much sleep.

            

Evidently RICE attacks cancer cells at a different stage of their reproductive cycle from RCHOP – the little information cards say, “May stop cancer cells from growing by interfering with DNA.” 

I arrived at about 1:30 this afternoon, waited for two hours downstairs in the admitting area until the bed was available and then came up. Earlier today I was able to get in a quick trip to the gym, and then went to see Tim play in his last football game of the year, which started around 10 this morning. (A digression - Tim is in Ossining Little League football, and it is really a good program. He had a great time playing both offensive and defensive line. He is a third grader in the 3^rd-4^th grade grouping and he got plenty of playing time. In one of the games he played every down on offence and defense. It is a tackle football league. Next, CYO basketball!)

Yesterday I received the Rituxin infusion (the R in RICE) at the Phelps satellite center office of Sloan Kettering. No problems with it, and afterwards went to a brief birthday party, watched Tim at his first basketball practice and then went for a really good cardiovascular session in the gym. 

So I was able to get in two trips to the gym between Friday evening and Saturday morning, which I am pleased about. I don’t know how I’ll feel when I get home Monday, or when I will be able to get back to the gym. Hopefully right away but can’t be sure how I’ll react to the RICE.

I am very keen to keep up my fitness work to the absolute extent possible while I am undergoing therapy, including during the stem cell autologenous transplant. This will be difficult, since the hospitalization could be for up to 30 days, and for much of that time I am not going to feel too hot.

I spoke to Dr. Zelenetz about this when I saw him on Thursday. I said, “Through this whole RCHOP chemo I’ve been going to the gym five or six times a week, what can I do when I’m in for the stem cell thing?” He said, “they can supply you with an exercise bike for the room.” So I said, “I’ve been thinking about maybe bringing some dumbbells when I get admitted.” He looked at me like I had a second head growing out of my neck and said “Well I don’t know about that. You’re going to have all sorts of lines running into you… It is a transplant. It’s not a trip to a health spa.”

In hindsight, that was pretty funny.

Me in Room 1235A. Ivana, an RN on the 7am to 7pm shift took this. I don't think I look as bad as this picture has me appearing - and I feel good.

Can't resist posting this of Tim today, having flattened the defender, Lording it over him.

Here's the new hairline

Brigid took this on October 23^rd, about 31 days after she took the picture of me that I’ve used to ID myself on this journal. What a difference a month makes! When Dr. Zelenetz saw me yesterday almost the first thing he said was “You haven’t lost all your hair. Most people look like Telly Sevalas.”

The almost-no-hair look doesn't bother me, but it's good to know it will grow back. And having had a full head of hair, my head does get cold. I've been wearing a pullover cap unless the weather is quite warm, and then I wear a baseball cap.

Good News from Lymphoma Guru

This morning (Thursday) we had our meeting with Dr. Zelenetz, to assess the results of the first chemotherapy protocol and to go over the pending protocol.

The news was very good. I had an inkling that things were going well on Wednesday, when I picked up my CT films and the PET scan report at White Plains hospital. The PET scan report was short and after describing the various places in my body where there was no sign of enlarged nodes, it ended this way:

IMPRESSION             No sign of malignancy            Marked improvement from 7/29/05

After a brief talk and examination from a resident (Dr. Shah) Dr. Zelenetz came in and said something like “things are going very well.” The CT and PET scans were very good. I’d had a good response to RCHOP and that meant we would only need to do two ICE chemo sessions, rather than three. Zelenetz said that in about one-third to one-half of patients, the response to RCHOP is good enough to only require two ICE, rather then the originally planned three sessions and I was in that group.

So I said, “well if there’s no sign of malignancy, what if I just said, Dr., It’s been nice meeting you and I hope we meet again sometime socially…” And he said, “That’s a good question. What if we stopped now? What if we just did six RCHOP sessions? (Note: I think CHOP for six sessions is an old protocol.) Then you could expect to have 15 to 18 months symptom-free and, in a large group, the average life expectancy would be about three years.” I said, “OK no need for further explanation!” 

He then answered a variety of questions we had, like should I get a flu shot (no), what about my sinus infections (the lowered cell levels due to the chemo could be contributing factor), itchy eyes (ditto), minor rashes (ditto again). And we discussed the stem cell protocol that will follow ICE.

So the near term schedule now is to get Rituxin tomorrow at the Sleepy Hollow office (this will kill my Friday morning) and then be admitted to Memorial around mid-day Saturday, and stay until the late afternoon Monday, for the ICE therapy. It is done over the three days and cannot be done on an outpatient basis. And it is actually RICE not ICE (Rituxin + ICE = RICE).

The therapy will be repeated in three weeks, the weekend after Thanksgiving.

Then it will be on to the big therapy the Autologenous (sp?) stem cell transplant.

Tomorrow I will post a bit more, including a picture of me with my new hairline (this is nothing to hold your breath for!) 

Althouse on Judge Alito

Yesterday there was an op ed in the NYT about Alito by Ann Althouse, a Law professor at the University of Wisconsin. Here's the op ed.  Separated at the Bench - New York Times  She has an interesting weblog and has written a bit of commentary on misunderstandings regarding Alito rulings, for instance on the Family Medical Leave Act (FMLA). If you are interested and have a few minutes, she's worth reading. Althouse  A link to her site is also listed on my "blogroll."

As a bonus, to read the reasonable and balanced editorial in yesterday's Washington Post on the Alito nomination, go here: A New Nominee

Short health Update

Fresh from my triumph of figuring out how to post a picture (see the next post and note that if you hit the link that says "continue reading..." it will take you to ... nothing! Don't know how I did that.) here's a brief discussion of current state of my body.

Thirteen days after last chemo and I feel good - except for the sinus infection. Went to see Dr. Zeitlin today (ENT specialist I've been consulting) and she put me on a new antibiotic - augmentin. Actually not new - I have been on it before. We'll see if it does a better job.

The sinusitis does make you feel a bit run down. Road the bike for 24 minutes and lifted weights for the same amount of time tonight. So I don't feel too bad.

One bad thing - in the last two days I probably ate more potato chips and chocolate then I ate in the prior two months. Not good.

On Thursday I see Dr Zelenetz (lymphoma Guru) and get ready for the new chemotherapy regimen that starts this weekend. I hope to write a longer post about the whole prior two month chemo experience on Thursday.   

Hey! I figured out how to post a picture.

How about that! This is my favorite picture of Brigid, Joe (to Brigid's right), and Tim (guy with curly hair) taken in April in Jamaica. The boys had never been to Jamaica and we figured it was time to show them where we'd met and gotten married. We had not been back in 25 years! I took the picture at Dunn's River Falls (that's the background). It was a great trip, which took us back to the town of Mandeville, in the center of the Island, at 2,000 feet in elevation. We were both working there in the late 70's (teaching). We met February 17, 1978, when Brigid crashed a party at my house.