Tom Faranda's Folly

NYT on healthcare costs and providers

The NY Times had two interesting articles today on healthcare costs and healthcare delivery. You can access the articles for free for one week on the Times website. You may have to register, but it's free and easy.

The first article's headline Congress Weighs Big Cuts to Medicaid and Medicare - New York Times sounds scary, and then you find out that the "big cuts" include raising certain co-payments for Medicaid from $3 to $5 (that's three to five), and eliminating 10 billion dollars from the private insurers pig trough. Despite the absurd headline (designed, no doubt, to make Bush - font of all evil - look bad) the piece is quite worth reading.

The second article is on a small but growing trend for physicians to offer "concierge" care. For a Retainer, Lavish Care by 'Boutique Doctors' - New York Times For a yearly retainer, you have more ready access to your physician, the staff is nicer to you, amenities are better, etc. You see, with the extra money going to the Docs, they can afford to have fewer patients and spend more time with those who (can afford to) pay the retainer. And of course the article points out, by quoting Congressman Pete Stark, that "The danger is that if a large number of doctors choose to open up these types of practices, the health care system will become even more inequitable than it is today." An excellent and balanced article.

By the way, the meaning of the term "concierge" is changing. When I see the word, I still think of a guy sitting at a desk in a hotel lobby. But "concierge" seems to have gained a new meaning - as in this Times article - providing upscale service. In the financial services industry you see it more and more used. For example life insurers will send large premium applications (say $10,000 or more in annual premium) to there "concierge underwriting" team. The insurance broker writing the insurance gets quicker and better service.   

An interesting development of the word, brought about by I don't know what.

Latest column by my neighbor, author Sue Konig

We have this very interesting and charming neighbor, Sue Konig. She's a writer and recently published a very witty book, Amazon.com: Books: Why Animals Sleep So Close to the Road (and Other Lies I Tell My Children) which I've been giving as a gift to many of my friends. A nice breezy, funny book.

We share a few things in common, like our children go to the same parochial school (St. Augustine's, on the Ossining, Croton border). Sue writes free lance, & here's her latest column. http://www.nationalreview.com/script/printpage.p?ref=/skonig/konig200510280735.asp It tells the tale of her oldest daughter's first "dance" - in the sixth grade. My son Joe is a year older, so he had his first "dance" last year (Joe's not too interested in girls, but is interested in hanging out).  Anyone who has - or had - junior high school children will find it amusing. Sue tells me the piece was also posted by CBSNews.com, where it will get a bit more exposure then on Tom Faranda's Folly.

I played rugby with Patrick Fitzgerald

UPDATE: Here's my March 7th post, after the Libby decision Tom Faranda's Folly: The Libby case and the prosecutor

       

Yup. The federal prosecutor who indicted "Scooter" Libby, and whose face was all over the newspapers and TV today, played rugby in the late 80’s with my club, OMEX. He played in the back row at wing forward and #8. He was a solid B team player – pretty average athlete, with good skills and good understanding of the game. At the time, OMEX was one of the top ten teams in the Northeast, so he played a very good standard of rugby. Blood, mud, and beer.

       

He was an excellent guy and club member. Quite sociable and enjoyed a few beers. He played for at least four years, but as he gained responsibility in his federal attorney job in New York, we saw less and less of him. I probably haven’t spoken to him in fifteen years. I had a conversation this evening with an attorney and judge – Rich McCord - who also played at that time (good player; big second row). He’d seen Pat in Chicago over the summer and said his personality hadn’t changed.

       

I am happy to vouch for Fitzgerald – a straight shooter and upright guy. Maybe I should get a t-shirt saying "I Played Rugby with Patrick Fitzgerald".

Poor Harriet Miers, Part Deux

On October 14th I posted "Poor Harriet Miers" - the link is here -  http://tomfaranda.typepad.com/folly/2005/10/poor_harriet_mi.html and I said "It seems a certain type of ideological conservative would rather get in a titanic political battle over ideas and agendas - even if it means losing - then simply picking up another chip on the table."

And this seems to be the case. The Ann Coulter-type conservatives are chortling over scuttling Miers. But what will happen with a nominee suitable to Coulter? Remember, she opposed Roberts. 

There will be a huge donnybrook - virtual blood in the streets with people like Ted Kennedy screaming about the "extreme right wing". And that's not good. People like Coulter would rather fight some ideological pie-in-the-sky battle, even if it means losing (it's probably good for her book sales).

Coulter, et al, would rather lose an ideological battle then win incrementally

A bit more fatigue

A little to my surprise, I did feel a bit more then just the mild fatigue I had felt in the middle of my prior chemo sessions. It was enough for me to leave my office early and take a late afternoon rest. I also decided not to go to the gym.

Still, while it was a little more then "mild" it certainly wasn't crushing. And it is day seven after chemo session, which seems to be right in the "sweet spot" for feeling fatigued.

Tomorrow I will be off to New Jersey, but my business associate/assistant Judy Anderson will do the driving. I expect to be fine by Friday, when I traipse out to Long Island. 

Therapy plan going forward

The plan is coming together. I had my CT scan Monday and PET scan Tuesday. Next Thursday, November 3^rd, I will see the lymphoma guru Dr. Zelenetz at Memorial Sloan Kettering in NYC and he’ll review the scans, bloodwork, etc and (hopefully) tell me everything is going to plan.

The next day I will have the Rituxin protocol at the MSK office next to Phelps. On Saturday the 5^th I’ll be admitted to MSK in Manhattan for the first of three ICE chemotherapy protocols. I will be in for two and a half days, going home Monday afternoon.  ICE has to be administered over three days, and cannot be done on an outpatient basis.

The ICE therapy will be repeated twice more, at two week intervals. For those I hope to go in on Friday and be discharged Sunday afternoon, which is a bit more convenient for me. That would also mean having the Rituxin protocol on the two Thursdays at Phelps. I didn’t know the Rituxin would be continued with the ICE protocol and it’s a bit inconvenient since it means I blow a morning getting the infusion. But Rituxin increases the efficacy of the chemotherapy, so it’s important.

It is now six days since my fourth RCHOP chemotherapy, and I am feeling a little mild fatigue. As with the first three sessions, the fatigue seems to set in from about the 6^th to 10^th days after the chemo infusion. I went to the gym this evening and cut back a tiny bit.

Over the next three days I have to do some traveling on business in the Tri-State area – New Jersey and Long Island – which, should not present a problem, even with the mild chemotherapy fatigue.

We rminded the boys that I'd be going into the hospital for some short stays, and it didn't seem to bother them. They seem to have adjusted well to my therapy. Of course a lot of that is Brigid doing a good job with them!

Follow-up to fourth chemotherapy

Today is the fourth day after my fourth (and last) RCHOP chemo and I feel good. Now I have two scans scheduled to re-stage the lymphoma.

Tomorrow I have a CT scan at Phelps. Of all the procedures I've had this is the one I dislike the most. I've had about five of them. The problem is that the prep for the scan requires drinking about 40 ounces of an evil fluid in the hour before the scan is done. The scan takes about twenty minutes, and then for the next 6 hours or so, you have to stay within about 12 feet of a toilet bowl, as your alimentary canal reacts to the insult. Anyway, that's been my experience. Not pleasant.

The next day I'll have a PET scan at White Plains hospital. This is a pretty easy procedure - you get an injection (an isotope), wait for about an hour and then the scan takes about 45 minutes. The two prior times I had a PET scan I think I dozed off in the machine.

This re-staging is standard, and I expect it will show that the lymphoma has retreated. Certainly all the small nodules I could feel seem to have completely disappeared. No signs of them at all.

I am really quite anxious to get on to the next chemotherapy stage which will be three sessions of "ICE." The start-up for that will depend on how quickly I can get the scan results to Dr. Zelenetz, and see him for an appointment. Hopefully within ten days.

Latest book read "the Doors of the Sea"

Most recent read is “The Doors of the Sea” subtitled, “Where Was God in the Tsunami?” It’s written by an Eastern Orthodox theologian, David Bentley Hart. And it’s a fine work that demands careful reading. I read and then re-read it.  It is short (109 pages), lyrical and literary. The title tells it all. Hart's book is an expansion of an op ed piece he wrote entitled “Tremors of Doubt: What Kind of a God Would Allow a Deadly Tsunami?” that was published in the Wall Street Journal, on the last day of the year in 2004.

Here’s a link to the op ed piece, at opinionjournal.com OpinionJournal - Taste to give you a taste of the book. You may have to register to get on the site - it's easy and free.

The title "The Doors of the Sea" is a loose reference to Job, chapter 38.

On being your own advocate

When I was diagnosed with lymphoma in August 2003, I got plenty of good advice from a number of people who’d dealt with cancer as well as from physician friends.

And the gist of the advice always came down to “you must be your own advocate.” In other words, don’t just hand over the care plan to your physicians and hope for the best.

Be proactive. Because no matter how great the physicians and the institution you are dealing with, and the physicians at Sloan Kettering have been superb, and the institution is top notch, plenty of things can fall through the cracks.

Here’s what I mean:

·         If at all possible, go to all meetings with physicians with your spouse or a good friend who will be able to follow through with you. That’s a second set of set of ears to pick up on anything you might miss. It’s easy to miss stuff the doc says! Have questions written down ahead of time, and then take notes when necessary in your meetings. You are virtually guaranteed to think of something you should have asked your physician 20 minutes after you leave the building. If it’s really important, try to reach his/her office on the phone; otherwise save for the next meeting.

·         Make sure you are dealing with a sub-specialist. He or she will determine the care plan. If you have cancer of the lymph nodes, you want to see someone who only deals with lymphoma. If you have colon cancer, someone who only does colon cancer. Etc, etc. Medicine is so highly specialized that you want to see the sub-specialist. It’s not enough to see an oncologist – you want the oncologist who is 24/7 dealing with your particular cancer. The oncologists at MSK in Sleepy Hollow are general oncologists; that’s why Dr. Wasserheit, referred me to Dr. Zelenetz at MSK in Manhattan. She said, “I am not a specialist in lymphoma” and sent me to the head of lymphoma services.  A couple of my physician buddies had not heard of Dr. Zelenetz, but they checked him out quickly enough and got back to me with the word that he was one of the top lymphoma guys in the world. And it was his opinion that we should adopt a “watchful waiting” approach to my lymphoma – there was no need for therapy until a problem manifested itself. So I got two years treatment free, where a general oncologist would almost certainly have started me on chemo right away. (I need to point out that I also spoke informally with two non-MSK oncologists after seeing Dr. Zelenetz. They agreed with his assessment.)

·         Get copies of all scans, lab reports, physicians reports, etc, etc. Always ask for copies of the actual films if you are having a CT scan, for example. The radiology department can easily make a copy for you at the time they are making the prints for themselves (you may have to sign a simple authorization). It’s a little trickier to go back later for your own copy – more paperwork and possibly a fee. But you are entitled to all these reports and scans – they can’t tell you “no”.

·         On crucial pathology or radiology always try and get second and even third opinions. In my opinion the pathologists and radiologists are the current kings of medicine because they are the people making the diagnosis! Once the diagnosis is made, the care plan protocol is pretty well laid out for the rest of the medical team. But the diagnosis must be spot on, and it frequently is not clear-cut! In my case, the pathology department at Phelps sent the excised lump in my neck to Mount Sinai, where the diagnosis of mantle cell was made. Dr. Wasserheit at MSK (Memorial Sloan Kettering) in Sleepy Hollow assured us that the Mt. Sinai pathologist was “superb”, but I still had slides sent to MSK for another opinion. They concurred with the Mt. Sinai diagnosis that I had mantle cell – the “indolent” version. I always have my CT scans reviewed by a second radiologist (a good friend of mine who along with his partner have been hugely helpful over the past two years!). The radiologist who does the initial reading is very conservative. That sounds good, but you don’t want to have unnecessary tests done for things that aren’t really issues! So I am lucky to have the back up.

Even at the best institution, it’s easy to have things slide through the cracks. For example, it was only last Thursday that I found out I needed to have CT and PET scans before moving on to the next chemotherapy regime. I called Dr. Zelenetz office to say, “What’s next? I am coming up on my fourth and last session of RCHOP so has the ICE regime (the next chemo protocol) been scheduled?” and the secretary asked me something like “are your scans scheduled?” “Well no, this is the first I’ve heard I need scans.”  So it’s just as well that I called!  So Wednesday before my chemo session, Dr. Caron in Sleepy Hollow wrote the prescriptions for both scans and they are scheduled for this coming Monday and Tuesday.

So Sloan Kettering is great – if someone told me they’ve just been diagnosed with cancer, that’s where I’d tell them to go – but you’ve still got to take responsibility. Be your own advocate!

Anyone reading this, who has been through cancer and has something to add, please do leave it in the comments section. Or any questions leave it in the comments section or email me.

Scientists mad at Dalai Lama - NYT

Some neuroscientists are claiming the Dalai Lama is making unsubstantiated claims (unsubstantiated by their scientific method) for the value of meditaion.

Here's an excerpt. I probably inadvertently violated copyright laws by publishing the picture so don't tell the AP.  The link to the full article is below.

"Next month in Washington, the Dalai Lama is scheduled to speak about the research at the annual meeting of the Society for Neuroscience.

Mel Evans/Associated Press

But 544 brain researchers have signed a petition urging the society to cancel the lecture, because, according to the petition, 'it will highlight a subject with largely unsubstantiated claims and compromised scientific rigor and objectivity.'"

Here's the link - Scientists Bridle at Lecture Plan for Dalai Lama - New York Times You may have to register with the NYT to read the article - it's free and easy to register.

Hussein trial article by John F. Burns in NYT

This is an excellent article, even though it's two days old. Burns is a great writer, I think he's the Times best reporter. Hussein Goes on Trial Wednesday, and Iraqis See a First Accounting - New York Times It sets up the trial. Th NYT may ask you to register with them (if you haven't already) to access the article, but it's free and easy.

My fourth chemo session

Yesterday's outpatient chemotherapy went well. First I saw Dr. Phil Caron, who reviewed the bloodwork and my file and wrote a new prescription for an antibiotic (Bactrim) for my sinus infection. Dr. Carol Wasserheit, who's been doing most of the follow-up in the past 2 years, dropped in to say hi and tell me how good I looked (hahaha).

I was also given prescriptions for another CT scan and PET scan, to enable Dr. Zelenetz (the lymphoma guru) to "re-stage" my lumphoma (I suppose that means seeing the effects ofthe RCHOP chemo). I wasn't aware that I needed these scans until I called Dr. Z's office last Thursday to see what was being scheduled, since RCHOP is now over, and I am to go to a new protocol - ICE - requiring two night stays as an in-patient in MSK in Manhattan.

This brings up an important, VERY IMPORTANT, point - when you have cancer you must be your own advocate. I am going to write about that tonite. It is so important and perhaps I should have written about it already

My CT scan is already scheduled for Phelps on Monday.

The actual chemotherapy took about four and a half hours and was quite easy. In fact I think I dozed off for about half of it. Never even opened the laptop. Did finish a second reading of "The Doors of the Sea", my latest read, which I will write a separate note about. Took a picture of one of the lounge chairs for the chemo patients - no one was in it of course, as well as a picture out the window, and three photos of some of the fish in the aquarium. Found out the name of the strange-looking big yellow fish - a "dog-faced puffer fish" - who was lying on the bottom, looking not too healthy. He'd been swimming around quite well two weeks earlier.

The receptionist said, something like "that fish is sick - don't think he's going to make it." And then she said "the fish over in Radiology are always dying off."  So I said to her "Of course they're dying - they're over in radiology - they're all growing two heads." The two staff members who heard this thought it was a riot. I have found that the smallest joke always gets a good laugh at the Sleepy Hollow branch of MSK. Could be that most of the patients don't joke around when they are there.

So my fourth session finishes my out-patient chemo and now it's on to ICE. I hope the first session will be in two weeks. That was the original plan, but nothing has been scheduled yet. I will have to see Dr. Zelentez first, and it might be tough to get the CT and PET scan results to him in time for the ICE to start in two weeks. We will see.

4th chemo session tomorrow

My last outpatient  RCHOP chemotherapy is tomorrow. As with the first two sessions, I feel pretty good now, at the end of the cycle of my third session. Only fly in the ointment is that I've developed a sinus infection. The sinusitis that I seem to never completely shake off, blossomed in the last four days into a full-fledged attack. This despite the fact that I've been on an antibiotic (Bactrim, taken three days a week) the whole time I've been on chemo. Sinus infections have been plaguing me the last few years.

So I spoke to Dr. Zeitlin, the ENT physician I've seen the last few times I had this problem, and I am going to take the Bactrim every day. Will also talk to the oncologist tomorrow about it.   

After the fourth chemo session, it looks like I'll have to have some  scans - CT scan and PET scan - to "re-stage" my lymphoma. This is annoying since it means taking about a half day off for each test. And I was only told this would have to be done last week.

But I do feel pretty good. Despite the sinus infection I was able to do about 45 minutes of cardiovascular work in the gym last evening (bike and the ellyptical trainer) as well as some stretching.

"The Sovereign People of Iraq"

The above is the headline in this morning's NY Times editorial which you can read right here: The Sovereign People of Iraq - New York Times The editorial writer (Gail Collins?) seems a little bit disappointed with the success of the "seriously flwed constitution" voted on in Iraq. Why might that be? Read the editorial and see if you agree.

Dinner with a mantle cell survivor

On Friday evening I had a brief supper and discussion with a Maryknoll priest who in 2000 was diagnosed and treated for the same type of lymphoma that I have. Since I didn’t ask his permission to post this, I am just going to call him Fr. M.

It’s a funny coincidence that my good friend Judy Anderson knew this priest from her days working at Maryknoll. In fact I think she may have taken him a few times to his chemotherapy sessions.

Anyone new to this web journal should probably go and read some of my earlier posts before reading this one - like Chemotherapy Tomorrow  just to get some background.

Father was diagnosed with mantle cell lymphoma – his recollection is that he was told his variety was a more aggressive one. He was treated at Memorial Sloan Kettering, and remembers my lymphoma Doc, Dr. Zelenetz, although that was not his primary lymphoma physician.

Within a month of diagnosis he had started on the same protocol that I am on. He had RCHOP chemo as an outpatient, and then ICE chemo with two night stays in Sloan, and then the stem cell transplant.

What I was most interested in was his experience with the stem cell protocol. Father’s recollection is that he was hospitalized for 28 days. For much of that time he was “sick as a dog” as they bring you “to the brink of death” before bringing you back. Father M seems to have had some trouble with respiratory infections, and was taught to suction himself.

Father’s description of the protocol was approximately this: first they take out some stem cells (presumably from your bone marrow) and then he received three days of radiation. This was news to me, since I was only told that I’d be getting “high dose chemo”. So perhaps they’ve changed the protocol, or simply haven’t given me a full description.  After the radiation came the chemo. The purpose of these is to destroy your immune system – the white blood cell count goes down to literally nothing.

After several days of chemo, and the satisfactory destruction of the immune system, came the great anti-climax of his stay. A nurse walked in with a syringe, pumped the contents into his IV and said, “you’ve just been transplanted” returning his stem cells to him!

The stem cells know what to do. They migrate to the bone marrow and go to work.

Then it was a question of waiting for his white blood cell count to go up. Which Father M described as a long process. There was a graph kept at his bed and each day they would fill in the progress – nothing for several days, then a very slow rise in the graph and then a sudden jump.

As I understand it, the purpose of doing the stem cell transplant, or reload, is the hope that the rejuvenated immune system will do a better job of recognizing and attacking the lymphoma cancer cells, if and when they recur. It seems to work, since the recurrence rate is put off longer for patients who have the transplant, then for those who don’t.

The results for Father M seem to have been good. Since the procedure in 2000 he’s had no recurrence of the mantle cell, although he developed just this year another health problem. It seems that his doctors do not think the new issue is related to either his lymphoma or the procedure.

Father M was a delightful guy to talk to – he was ordained in 1976 and spent many years in Bolivia, Chile, and Peru. He went to Peru after his lymphoma treatment. So he clearly made a good recovery.

I was not surprised by his description of his stem cell treatment experience. Obviously when you are having toxic chemicals poured into you, and your immune system is destroyed – that’s going to produce some shaky days. I’m not a rocket scientist but I’d already figured that out.

Poor Harriet Miers

Is this lady being clobbered, or what? And by her own side! It seems a certain type of ideological conservative would rather get in a titanic political battle over ideas and agendas - even if it means losing - then simply picking up another chip on the table.

The New York Times had an interesting op ed today by Michael Scully, a former Presidential speechwriter, in which he skewers certain conservative critics of Miers. The article is here:The Harriet Miers I Know - New York Times   The link should be free for the next seven days, although the Times may ask you to register. It costs nothing to register.

I'd like to see an non-judge practicing attorney named to the Supreme Court - it would give Court members another perspective. Here's hoping Miers comes up aces in her Senate Judicial Committee hearings, making Buchanan, Coulter, Kristol, etc, look as petty as they are.

Yeah, that's me

The picture of me to the left was taken on September 23rd by Brigid with a Fuji digital camera. The "backdrop" is the aluminum siding on the back of the house. Still not sure how I got the picture on there - I was on the control panel page, hit a few buttons, and almost randomly chose the picture. And two minutes later, there I was!

And that's my real hair, which is almost all gone now!

Exercise, Cancer and Chemo

A month ago – on September 13^th Sloan Kettering had a conference entitled Cancer and Exercise. It was videoconferenced to their satellite offices, and I attended at the Sleepy Hollow offices. A rehabilitative medicine physician and an RN who is also a certified personal trainer gave the presentations.

It was interesting – good but without any dramatic insights. As expected, they encouraged exercise while you are undergoing therapy – either radiation or chemo. They set pretty basic standards – three to five days a week, cardiovascular work and some strength work.  Each individual was different, and had to determine their own intensity levels, etc.

The rehab medicine doc made a couple of points, which I didn’t know. He said that fatigue related to chemotherapy, which most people suffer from to one degree or another is typically not relieved by rest. I found that very interesting. He also said that fatigue is typically worse four to five days after treatment “at the nadir of cell count.” I have found I feel the worst from about day seven to ten. I am currently at day eight after chemo session #3, and I am suffering from a little fatigue. However I did go to the gym tonight. I cut back a bit – rode the exercise bike for 14 minutes to warm up, and then lifted weights (actually used weight machines – I rarely use free weights these days) for about 25 minutes.

In the past six weeks I’ve found that when I am a little bit fatigued and go to the gym for an abbreviated workout, I feel much better afterwards. Tomorrow I will try and do 40-50 minutes of cardiovascular work (on the bike and an elliptical trainer) along with 10 or 15 minutes of stretching.

The “fatigue” thing is kind of funny and difficult to describe. It’s not like you’re tired or rundown, or exhausted. It’s more your body telling you something’s not quite right (a bit like the feeling you have with a concussion) and you can’t get out of second gear.

The RN / personal trainer aimed her part of the talk at people who maybe were a bit older than I, and hadn’t exercised in years. So her game plan wasn’t that useful (doing housework was good, deep breathing was good, walking with your arms pumping was wonderful, etc). However she also made some interesting points. She said if you keep exercising during treatment, your exercise performance will drop 50% and post-treatment it (your exercise performance)  will take two to three months to build back up. If you stop exercising during treatment, your exercise performance will drop to zero, and it will take six to nine months to build back up.

So far my exercise performance hasn’t dropped at all – but I’ve only had three chemo sessions. So we’ll see what happens over the next three plus months, as my therapy will run into January. But my plan is to continue exercising, five or six days a week.

Note – the gym I use is three minutes from my house and five minutes from my office. That helps a lot!

Yanks Mojo Fizzles

OK. When your marquee player - the highest paid man in the game - bats 133 for the whole series, and your #5 hitter leaves eight men on base in the decisive game, you've got troubles.

So I missed the boat with my Sept 20th post, Yankees - this year's team of Destiny?

But the post did have a question mark!

Baseball is a funny game, and hope springs eternal. (Hey! In the space of nine words I managed to get in two cliches! Not bad for a beginner.)

Third chemotherapy session

My third chemotherapy session was last Tuesday, the 4^th of October. So far, again not much in the way of side effects. I was able to have good gym sessions since then, and will go again later today.

I do have some numbness in the tips of my fingers. Dr. Chia (the MSK oncologist I saw on Tuesday) suggested taking vitamin B-6, which I have started. I also had a rash, mostly on my back, and there was a slight concern about it being a reaction to one of the meds. But it seems to have gone away.

On Wednesday morning I went down to MSK in Manhattan for my appointment with Dr. Nikolaides, one of the kidney docs whose been following my Nephrotic Syndrome. I got down to Sloan Kettering, through the appointment, and back home in record-breaking time, proving once again that every day should be a Jewish holiday. Which was good, since Paul’s wake was that afternoon.

The news was good – she had the bloodwork from the prior day and said that when Wednesday’s results were in there was a good chance we’d be lowering the meds I was on. And that was the case – on Friday she called and said there was “no protein in my urine to speak of” and that my cholesterol was down to “about 150” (Nephrotic Syndrome raises your cholesterol – mine had gone up to 400 in July) and I could discontinue the cozaar and lipitor. So all in all, excellent news.

I gave Dr. Nicolaides a gift when I saw her – a small book entitled “The Doors to the Sea”. My last visit to her six weeks earlier, I’d mentioned that I was already working on a book list for myself for the stem cell hospitalization session after chemo ended, and she asked me what I’d be reading.

“The Doors to the Sea” is an essay by an Orthodox theologian with the subtitle “Where was God in the Tsunami?” It’s kind of an interesting coincidence that I had been reading it when the personal tsunami of my brother’s death occurred. Dr. Nicolaides had told me she is Greek Orthodox, so I figured I’d give her a copy. She seemed to appreciate it. 

So as far as my chemotherapy, thing are going well. 

New Journaling Service

As you can see, I’ve moved my web journal service over to Typepad. Or rather, my brother Phil moved it over after I complained that Bloggerspot was a little too complicated to use. Bloggerspot is actually pretty easy to use (and free), but Typepad is idiot-proof, which is what I need.

So suddenly I got an email from Typepad that I’d started with them – Phil did the whole thing, including paying for the first year. Or he says he paid; we’ll see. The cost is pretty nominal anyway; about 6 bucks a month.

Paul's Last Rites

My brother Paul’s wake was Wednesday and the funeral Thursday. Thanks to the many friends who made the wake, the funeral, or who contacted us by phone, email, etc. And a special thanks to the boat-mates of Paul, from his crew days at Cornell, who made the Wednesday evening wake.

Tony Johnson came from Ithaca.
Dewey Shay came from NYC.
Bob Tapscott came from Boston.
And Pat Hancock came from Poughkeepsie, and also attended the Thursday morning Mass of the Resurrection.

My family appreciated the efforts you made to honor Paul with your appearance. And I learned a bit about how these crews actually function – which I never knew (Like the cox doesn’t sit at the back going “stroke, stroke”). These four lads were all very athletic 6+ footers – looked like rugby #8’s! - and I had a few good laughs today thinking about my 5’3” (on his tall days) brother at the back of the skiff yapping away while they provided the grunt!

And also, John Donahue, Paul's friend from high school with whom he was out of touch for 25 years. Not long ago, they were reunited when a mutual friend ran into our nephew Paul Faranda and within a month John flew from Connecticut to Texas for a happy visit. They remained in contact until Paul's death. John was at the funeral and wake, and shared some great memories. So a terrible and painful few days, eased by the knowledge that Paul was loved and admired by many people.

Paul Faranda, 1958-2005

 

Four days ago, Wednesday, September 28th, we got the news that my brother Paul had died. He’d missed his dialysis appointment and when they went looking for him, they found his body in the bathroom. He was 47.

This is tragic and heartbreaking. We are all crushed. But it is not surprising. My brother was sick from the age of three onwards, suffering from congenital kidney disease and juvenile diabetes. In 1962 and 1963 he spent many months in New York Hospital, and my parents would return from the hospital and say, “we don’t know if Paul is coming home.”

My brother Jim and I have vivid memories of the night we spent with my parents friends – Paul and June Dennis and their family in Ossining - while they took Paul to the New York Hospital emergency room. He was being treated for kidney disease in Westchester but he had not been diagnosed as a diabetic. So to build him up, at the recommendation of physicians, we were merrily loading him up with high calorie meals. And he was getting sicker and sicker.

He was diagnosed with severe diabetes at New York Hospital and in the space of a bit over a year, spent about eight months there. Jim and I also have vivid memories of us standing along the East River (New York Hospital fronts the East River and FDR Drive) watching the barges go by, while Mom and Dad visited Paul. This was over forty years ago, and children were not allowed to visit hospital floors (infections, you know). It was pretty boring to stand out there, and then for a few minutes Paul and my parents would be at an eighth floor window, waving to us like maniacs, while we waved back.

You don’t realize it when you are eleven years old, but the whole ordeal must have been horrific for my parents – a very ill four year old hospitalized 35 miles away, and two other boys at home, who you are trying to construct a normal life for.

So ultimately Paul had one damaged kidney, a ureterostomy (the ureter that runs from the kidney to the bladder is instead routed to the surface of his right flank and he wore an “appliance” to catch the constantly draining urine), and diabetes requiring insulin and constant blood sugar monitoring.

Now fast forward fifteen or so years and Paul is graduating from Cornell University, having spent four years on their rowing team as a coxswain! Pretty good going!

The coxswain is the little guy who sits at the back of the skiff, steering it, and setting the tempo (“stroke, stroke”) while everyone else is pulling on the oars. Typical Faranda – do all the talking while everyone else does the heavy lifting. One of Paul’s prize possessions is the Harvard jersey he lifted in 1980 when Cornell beat Harvard for the first time in almost 20 years in a dual race.

Soon after graduating from the School of Hotel Administration, Paul moved to Texas and went to work in the hotel industry. He gradually gravitated to the accounting end of things.

Paul was very careful about taking care of himself, since his health was a constant issue. He was fastidious about his diet, his blood sugar levels and his consultations with kidney specialists. He was self-effacing and never wanted to be a burden to anyone.

Now diabetes can affect the circulatory and renal systems, and by 1993 Paul needed to go on dialysis. He also started having trouble with his vision. He was on dialysis until 1998 when he underwent a kidney and pancreas transplant. They also re-hooked his ureter to a re-fashioned bladder (a loop of bowel) so for a while he could pee like the rest of us – for the first time since he was three.

The transplanted kidney failed in 2001 and he went back on dialysis. Then in 2004 the transplanted kidney developed a tumor.

Paul was back in New York this past June and July for about six weeks. His health had clearly gone downhill – I felt he’d aged tremendously. However he had a great time while he was here, going to his 25th college reunion – my brother Phil took him up - as well as to a big family reunion my Uncle Bud puts on every July. So it was a great trip for him.

I am sure Paul’s biggest regret was that he’d never married and had a family. It just never worked out for him. It would have been great if he’d had children. He was a fun Uncle to his nephews. (When I suggested to my mother yesterday that my son Tim shared some of Paul’s mischievous impulses, she blanched.) I think in the last year or two Paul realized that the marriage opportunity window was closing, and he sometimes became a bit down about that.

All in all, a courageous man, filled with grace and humor. And hope. A person of great hope. When people have remarked to me that I seem to be handling my lymphoma situation well, I have always said – “This is nothing, let me tell you about my brother Paul.”

I spoke to Paul twice in the last two weeks, first when he called me up to see how my chemo was going, and then the Thursday before he died, when I called him to find out how he was planning to ride out the hurricane. He said “It wont be a problem, I am going to stay here (he lived in Round Rock, a suburb of Austin) and I’ve got my dialysis scheduled for Friday and Monday.” And as we signed off he said what he always said, “Love ya.”

My brother Jim summed up Paul exactly right Wednesday night when he said, “He led a noble life.”