A Path to Summer

It’s been a busy two weeks since my last post, so I thought it a good time to let y’all know what’s going on. After a week or so of waiting for the stent to do its magic, we met with the onc. My billies had fallen to 2.0, still well above “normal” but perhaps in range for some treatment. And, happily, Dr. S felt that we were close enough to try. He recommended a half a dose of straight irinotecan (no chaser), and I could start immediately, if he could squeeze me into the afternoon’s treatment schedule. Of course, I agreed to hang around and, in fact, didn’t even have to wait any longer than if I had been on the schedule – so many thanks to the chemo nurses at MSK for squeezing me in!

Irinotecan has some unpleasant side effects and taking it with poor liver function adds a layer of complexity. The head nurse reviewed the issues with Robbie and me – most of which was the list of side effects you expect from chemo – but she was very firm about one item. I have to take my temperature twice a day and if the reading hits 100.4 degrees, I need to go immediately to MSK’s Urgent Care center (at the main hospital on 68th Street) or to my local emergency room. Irinotecan suppresses your immune system and is cleared from your blood by the liver. If liver function is poor, like mine, then the chemo stays in you and keeps beating up your immune system. To complicate the issue, I have two foreign objects in my body – the mediport leading to my heart and the liver stent – which are places where infections like to gather. In short, the nurse told us that any fever could be “life threatening” and that we needed to have it checked.

The treatment itself went well but after a couple of days, I had an incredible bout of fatigue. I’ve had these from time-to-time in the past. It’s like being a tortoise on downers…everything in slow motion. And then, almost as predicted, my temperature hit 100.4 degrees, although briefly – it dropped to about 100 in an hour or so. I was so exhausted at that point, I refused Rob’s insistence that we go to the ER until morning as I just desperately needed some sleep. We spent the next day at MSK Urgent Care where I checked out okay and was sent home. If my bloodwork had not been good, I would have been admitted and received IV antibiotics. My strength is coming back – feeling better every day – although I again ran a fever at 100.4 Saturday night (which also lowered after an hour or so and again I refused to go to the hospital). And I was fine in the morning.

Yesterday, we saw Dr. S and the results were very good. My billies are down to 1.3 (nearly normal) and all the other bloods look good. I feel quite well and haven’t used any pain killers for several days. As a result, we decided to up the dose to 3/4th the normal amount and I will start a 2-week-on/one-week-off pattern, most likely upping the dose to the full amount at some point. (And, I get next week off!) We discussed the fatigue/fever thing and Dr. S felt that the fatigue might have been from a virus. Fatigue is a side effect of irinotecan but not to the extent that I had it and I had none of the other, more common side effects. Consequently, he thinks the fatigue, coupled with the low grade fever might mean that I was just fighting a virus. He did adjust the 100.4 rule for me to 101 degrees but warned that I must go immediately to Urgent Care at 101. The liver stent can attract an infection very quickly and my condition could get very serious even if I delay only a few hours in seeking treatment. Fair enough.

So, I took treatment yesterday to no ill effect and we will see how the week goes. I’m very glad to have gotten it – and very optimistic about my prognosis - I now have an excellent chance at some sustainable health improvement for some time to come! This is the path we hoped would lead to recovery and it appears to be going very, very well.

Thank you all for your support. And a hundred times thanks to my wonderful Robbie. Today is the first day of Summer and I wish you all a full season of blue skies and cool sea breezes! BB

PS - This post's photo is an original...from Cape Cod a few years ago....mmmm, now I want some clam chowder.....

Still on Course

It’s been a crazy week, but after doing more flips and turns than a drunken stunt pilot, I am on course. I had my liver stent procedure last Friday with the goal of lowering my billirubin level enough to qualify for chemo. Going in, the expectation was that it would take about two weeks to get the full effect. Now, a week later, my billies are down from an initial 6.5 to 4.2 and I will have them tested again next Thursday. If I get about the same amount of further progress, maybe we will be close enough to do something. In the meantime, I am home, just trying to take it easy and avoid any further complications.

As to the flips and turns, I woke from the procedure with three issues – significant pain, a cardiac arrhythmia from the sedative, and some whacked out blood work. So I stayed an extra day in the hospital on a heart monitor and to get new blood work every 6 hours or so. But mostly, I needed the enhanced painkillers. At first they were giving me something which, to my blotto’d mind sounded like “fennel seed” and it worked about that well ( I suppose it was Phenyl-somethingorother) but when they switched to Dilaudid, I became a much happier man! For the most part, things settled and I came home Saturday night. As for the arrhythmia, that never really concerned me much - I felt that I just needed some rest and would be fine.

That plan seemed to work until late Monday night when I started to experience rather severe pain. By 3 a.m. the pain was incredible - I have never felt anything like it – and I’ve only ever said that once before – but that was in 1983 and involved a Swedish hand model and an orange sno-cone – so it was a totally different situation. In any event, Robbie and I went to the urgent care center at Sloan where they did Xrays, new bloodwork, another CT scan and, most importantly, gave me some “D-lord”. All the tests came back in better shape than when I left the hospital Saturday night – and my billies were already down to 3.5 – so I got a prescription for stronger pain meds and came home.

On Thursday, we met with Dr. S and I was quite optimistic that we were on track. To our surprise, my billies rebounded to 4.2, so he did another CT scan and consulted with the surgeon. In the end, it appears that the stent is in the right place and working so perhaps the uptick in billies is just an anomaly. To be cautious, though, I started a course of Cipro (antibiotic) just in case there’s some infection they can’t yet otherwise detect.

In the end, though, I’m still on course, with the billies down and the pain being well regulated. I am optimistic, actually, that this is all just part of the bumpy road that will get me back into therapy.

In the meantime, just for the joy of it, I wrote a good solid spreadsheet to model the economic value of a Credit Shelter Trust since we’re considering adding one to my will. It may sound a bit geeky (or a LOT geeky), but I enjoy financial modeling…even if I don’t have the bod for it that I used to!

In any event, that’s what’s new here. Hoping for an exceedingly dull week to come!! BB

Need a New Path

I had a scan last week to check on the progress of treatment and a meeting with Dr. S at which, I had hoped, to talk about how much longer I might be on Vectibix before getting a break.  But my scan was quite poor and the situation now is entirely different.  Evidently, my Chinese hamster had short legs and he ran out of gas.  My tumors are again growing and, even worse, in the week or so before the meeting, I starting seeing signs of a return of jaundice.  The jaundice was confirmed at our meeting, with a reading of 6 mg/dl.  The acceptable maximum for normal is 1.  I am now in a position very similar to the one I survived last fall.

Unfortunately, Dr. S had an emergency last Thursday so I got the news from a fill-in who was, frankly, pretty pessimistic about my future.  He effectively told us that there isn’t much MSK will be able to do for me.  But we scheduled a meeting with Dr. S on Tuesday and insisted that my scan be sent to the surgical areas for evaluation.  So, after a nervous weekend, Robbie and I met with one of the surgeons on Monday and Dr.S on Tuesday and have put a plan in place.

Since Vectibix has now failed, I have only one drug in the cabinet – irinotecan (pronounced like “I’m in a tea can” if you replace the ‘m’ with an ‘r’.)  However, irinotecan cannot be given to a person with jaundice.  This is the exact issue I had in the fall.  The difference this time is that the major liver blockage I have on the current scan is in a place the surgeons can reach.  So, if they can insert a stent, it is possible that my billirubin level might fall below 2.0 and Dr. S might be able to use some irinotecan.  He is not sure that we can get below 2.0 since the major blockage may not be the only one, but it’s worth a try.  Alternatively, if the stent does not get my billies low enough, Dr. S said that he will search the available experimental drugs or try to “finesse” some small amount of irinotecan, although it would be very harmful to me to take very much.  Overall, it’s a long shot, as this paragraph is full of “Ifs” but at least it is a plan.

The technique they will use for the stent is an endoscopy which is pretty non-invasive.  It involves snaking a tube down your throat, taking a left at the stomach and a right at the duodenum.  Then, staying right at the turnoff for the gall bladder, you arrive at the base of the liver’s main billiary duct.  You can mapquest it, if you like.  The important point is that they won’t need to cut anything and I’ll be home in a day – probably with a sore throat! And a side benefit of the stent, even if it doesn’t extend my life, is the clearing of jaundice symptoms – the worst of which are exhaustion and intense skin itchiness.

My endoscopy will be tomorrow and it will take a week or two to see how low my billies will go. Then we’ll figure out what paths may be available for a return to chemotherapy.

And so, much like last fall, I have come face-to-face with the “no more treatment options” scenario but do have a possible path out of it.  I’m hoping for another miracle and a little hope is better than none, I always say. 

May Day Sit-In

I see it’s been a few weeks since my last entry. I’ve had a couple of rounds of treatment since then which went just fine. In the interim, I went to Florida briefly to get my Dad’s car and drive it back. Since I don’t generally have a lot of energy, I split the trip into segments of no more than 4 hours of driving and so, it took about 5 days total to get back to NJ. Along the way, I stumbled across a truckstop with the best fried chicken I’ve ever had – just north of St. George, SC. It called itself a café but, in my book, when you’re attached to a gas station/convenience store, you’re a truck stop. Nonetheless, the fried chicken, mac and cheese and collard green lunch was superb! Good thing the hotel was right next door so I could sleep it off! I also stopped in Richmond for a terrific dinner with my old friends from Genworth - and that was a treat to get caught up with everyone. And, one final stop off in DC for lunch with another former colleague made for an enjoyable trip.

This week’s treatment coincided with the Occupy Wall Street May Day protests in the city. I met Vicki for some lunch before my appointment and decided to walk to treatment which took me, as usual, through Bryant Park, one of OWS’ rally points. They had a pretty good drum circle going, surrounded by protesters who, I suppose, played in their high school marching bands, so it almost had the atmosphere of a college football game tailgate party. Except that the big dancing mascot was the Statue of Liberty. There was also a group dressed in uniforms designed to look like the old Brooklyn Dodgers except the team name was the “Tax Dodgers” and every player wore the same number – “1%”! I thought that was pretty creative. One curiosity, though, was that a large group of protesters apparently had come down Fifth Avenue and turned onto 42nd Street across from the NYC Public Library where it appeared they were being held up by the police – there were a LOT of police, at least 20 or 30 of which were on motorcycles to form a wall keeping the protestors on the sidewalk. In any event, they were sort of corralled right at a Qdoba, which made it appear that they were protesting the fast food chain! I was expecting some pithy chant – maybe “Hey Hey Ho Ho, we don’t need your Burritos!” But I think they were really just being held until the cops could stop traffic enough for the group to cross into the park.

So, that was all the excitement before I held my personal sit-in in the Big Chemo Chair on 53rd Street! Hope you are all well, BB

Cicada Lesson

It has been a busy time here, as I imagine it has been for all of you.  A week ago Saturday, we held the interment service for my father.  The Deacon did a nice job and it was very nice to have my two aunts and a number of cousins from my father’s side join us.  More Birminghams than we’ve ever had in the house!  We talked a lot about family history – much of which was unknown to me before.  And, we discovered that my son David is the only boy of his generation in the rather large Birmingham clan.  So it is up to him to carry on the family name!

And so, we moved on to the busy holiday week, with Passover and Easter just days apart.  Robbie and David made a trip to Richmond, but since I had chemo on Tuesday, I stayed home and made the matzo ball soup and gefilte fish!  And then to round out a busy week, Vicki’s birthday was Monday (19!) so we trekked up to Morningside Heights for dinner with her.  She’s doing really well at school and, for me anyway, her freshman year seems to have just zoomed by.

I got a little reading in while the house was empty, finishing off a biography of J.D. Salinger.  It was quite interesting to get a sense of the man who wrote the quintessential 20^th Century American novel and then became the quintessential American recluse.  I did not know, for instance, that he was a war hero.  He landed at D-Day, fought through the Battle of the Bulge and liberated concentration camps.  In fact, one of his duties was interrogation of prisoners and locals in both France and Germany since he spoke both French and German.  The biographer theorizes that his traumatic war experiences, being so at odds with his elite Upper West Side upbringing, solidified his mission to write about the phoniness and pettiness of American culture.  In any event, a good read, if you like bios – it was just written last year (as you may know, Salinger died at age 91 in 2010). 

Another interesting tidbit I got from the book was that Salinger had a great interest in Zen and Yoga after the war and it quoted a Haiku he particularly liked by the poet Matsuo Basho.  it reads:

Nothing in the song

of the cicada anticipates
how soon it will die.

I like it very much myself.  It might strike one as a bit morbid, but I find it inspirational.  The Cicada sings long and loud for all its short life.  Living it to the fullest without recognition of its brevity.  That’s a good philosophy.  And so, I leave you with that thought – live loudly, fully and without hesitation!

Turning 50

No, not that turning 50 – not ‘til December, actually. This week, I had my 50th chemo treatment and, like a birthday, I think of it as a milestone. It was the usual fare other than the addition of a dose of magnesium. Who knew we need magnesium? I know – all you smart medical/health people do – but I didn’t. And evidently, I was below the proper level so I got a bonus half hour in the chair. By the way, taking IV magnesium gives you a hot flash that lasts a couple of hours but I was assured by the nurse that it wasn’t just menopause.

So now that I have my metal back (I know, terrible pun), I can move on to ruminating on the big 5-0. I have many friends who in the last couple of years, or within the next year, have/will hit the half century mark and many of them accept it with a bit of resignation. But perhaps this comparison would help: having 50 chemos is a good thing. It means that I’m still here. It means I still have the opportunity to do things that are meaningful to me and to my family. I can still learn and grow as a person. Turning 50 years old can be viewed the same way. You are here, leading a meaningful life, helping your friends and family, learning new things, accomplishing goals. And, as a bonus, you have the experience of the last 50 years to give you more wisdom and perspective.

If you ponder for a moment the idea that most people will live a relatively healthy life into their 70’s and many well beyond, then turning fifty simply signifies that you have somewhere in the neighborhood of 20 to 30 more years to learn and grow and contribute. Twenty or thirty years!!! Imagine what you would say to a twenty year old about all the things they could do before they turn forty…then apply that logic to yourself and go for it! So, fifty chemos or 50 years, it doesn’t matter – they are both an opportunity and a gift - it just depends on your frame of mind.

And to commemorate the combination of age and opportunity, I bequeath you this photo of the “Terra Nova” – a fishing trawler from Provincetown, MA. She’s a bit long in the tooth but goes out every day in search of a big catch. And I’m sure her crew prefers the joy of trawling the seas to sitting on the dock wishing for a better (younger) boat! BB

Things past and present

I haven’t had a lot blogging mojo lately so hence, it’s been quiet.  My father’s passing has made it a busy time, for as much as he tried to simplify things, settling up all the accounts and such has been a lot of work.   My brother and I made another trip to Florida last month to take care of a number of things that could  best be  done there – transferring the car title, visiting the tax assessor, the lawyer, the condo association, various insurance agents, etc.  It’s all on track but, like I said, very time consuming.

My father had made arrangements to have himself cremated and I brought his remains home on the plane.  We are going to have a family gathering for a small ceremony at the end of the month and we will inter him in a plot not far from mine.  Once we do that, I think I’ll feel a bit more like moving on.  In the meantime, to distract myself from the mundane paperwork of the estate, I spent some time looking into the family history on Dad’s side of the family.  His mother was orphaned as a young child and raised by an older brother.  I had always kind of wondered what the story was behind that.  It turns out that I found a wealth of information in a database of old New York newspapers (and with the help of some of my mother’s prodigious genealogy skills).  Of course, answering one question often just leads to another so now I understand how genealogists can become so obsessive about it!  FYI - the orphan story is that her Mom died of kidney failure in 1909 (at age 48) and Dad of food poisoning (bad clam chowder) at age 49 in 1910.  My grandmother was 6 at the time, with older siblings who were 11, 15, 18 and 22. It’s also quite a trip to read some of the articles in these old newspapers – the ones I read are from the 1850’s to about 1920.  For example, there was a piece on a woman who was convicted in 1889, and fined $25, for being “a common scold and a nuisance.”  The judge lectured her and told her that some of her neighbors were just as bad!  Can you imagine being convicted of “being a nuisance!”

On the health front, I have had three rounds of chemo and one CT scan since I last blogged.  The treatments are going well and my scan looked very good.  I had some significant pain problems in January and February for which I was taking more oxycodone than normal, but those have abated.  David suggested that perhaps, instead of “growing pains” I was having “shrinking pains” from the treatment.  In any event, I’m doing very well.  The treatment this week was the 49^th of my career as a cancer patient.  I wonder if they’ll give me a merit badge next time for my 50^th!

I hope you are all doing well and thank you to everyone who sent condolences….here’s a picture of Dad with his Mom – Grandma Agnes – in 1938…BB