New Year Update

Happy New Year to all y’all…I hope you had a great holiday season and are getting off to a good start for 2013! I thought I’d post an update before I go back in for Part II of my radiation procedure.

The first procedure went reasonably well. It was a long day at the hospital but no major complications. The first few days after were a bit rocky –including two trips to the ER – but in the end, everything settled down and I have been feeling better every day since. Tuesday, I went for a PET scan and some blood work to make sure I’m in good shape for the procedure tomorrow and to set a baseline for my post-procedure monitoring. When radiation is used in my case, the tumors won’t shrink but rather they will die, or partially die, in place. Therefore, a PET scan is done before and after the procedure to look at the amount of cancer “activity” in the tumors and hence, determine if the procedure worked.

My blood work checked out okay, so I will go back to the hospital tomorrow to have the radioactive microspheres injected into my liver. I am told that this process will be shorter than the last one, which involved mapping the arteries and sealing off the branches that go to places outside the liver. I should come home tomorrow night and then I’ll need to lay low for a week or two. The doctor says that the most common side effect from the radiation is fatigue. He is going to try to do both lobes of my liver in one session which, if he does, will eliminate the need to have a third round. That’s good news to me since I didn’t really enjoy the first one all that much. The downside is that the reason he wants to do both sides at once is that I have a lot of cancer in there and he’s concerned about getting to it quickly enough that I don’t jaundice (and thus would no longer qualify). In any event, I am hopeful that things will go as smoothly as possible and we’ll see some results by the end of the month. I just need to suck it up for one more rough patch.

In the meantime, it has been an enjoyable holiday here. Vicki is home and it sure is fun to have her around. David just celebrated his 17th birthday and passed his driver’s test – so he is now happy to bop on out to the car and go see his bros! Here’s a picture of him just after he passed the test!

Wishing you the best of the New Year! BB



Happy Nuclear Holidays

Okay, I haven’t blogged in three months, so I guess I should provide a brief explanation as to why. The fact is that I was a bit too melancholy about the results of my August scan to find the right words. My late August scan was the first scan after starting Irinotecan, which I eased onto after getting my stent. Normally, a first scan will show that a drug is “effective” if the tumors shrink by 50% or more. That scan showed shrinkage of only about 10%, indicating that the drug wasn’t going to be very powerful for me.

Normally after getting a bad - or in this case not-so-good - medical report, it takes me a couple of days to regroup and focus on the positive path forward. But in August’s case, I just couldn’t seem to do it. I guess my reserve of emotional resilience had run a bit low. I just couldn’t shake off the feeling that the report was a harbinger of bad things to come. So, I kind of laid low all Fall – not being particularly social on a number of fronts. In the meantime, a few events passed without comment – the 4 year anniversary of my cancer diagnosis in early October, the Super Storm Sandy in late October and, most notably, my lovely wife’s 50th birthday! I know, how could I pass up the chance to write about my “old lady”??

But it was a nice Fall nonetheless, with Rob and the kids doing well.

Unfortunately, my premonition that things would get worse medically has been confirmed. I had a scan two weeks ago that shows significant tumor growth in my liver and new metastases to my lungs. The Irinotecan worked only as a brief stop-gap much as the Vectibix did earlier this year. As a result, I have now used up all of the available chemotherapies and am in the end-game.

But providence still gives me a couple of options. There is a newly approved drug for end-game patients with low side effects and some modest ability to prolong life. In addition, there is a radiation therapy which can be both harsher and riskier, but might also provide a more meaningful extension of life. After discussions with my oncologist and the Interventional Radiologist (the surgeon who would do the radiation procedure), we have decided to give the radiation a try.

Since time is not on my side, I will start the process this Friday with an angiogram to map my hepatic artery, close off the portions that go to other organs (outside the liver) and test that the only blood flow left goes towards my reachable tumors. If it can be sealed off as needed, I will return for another angiogram in early January to have radioactive “microspheres” injected, which should lodge themselves in the tumors. I will have that procedure again a couple of weeks later because the protocol is to treat one lobe of the liver at a time (livers have 2 lobes and I have cancer in both).

An angiogram, by the way, is a procedure where a catheter is inserted into an artery in the groin and then threaded up to the doctor’s “worksite”. Normally, I avoid any activity whose explanation starts with the sentence “We’ll insert a large needle into your ______”, if the blank is filled with a word like eyeball or groin. But in this case, I’m making an exception.

Since these procedures will play out over the next 6 to 8 weeks, and issues may or may not arise in innumerable ways, I can’t say how easy or hard it will be. I’ll just hope for the best and take it as it comes. But most importantly, I hope the radiation will work!

In the meantime, I wish you all a happy holiday season.  

The End of Summer

This weekend is the quasi-official end of summer and I'm sad to see it go - even though September has always been one of my favorite months.  Despite the troubles of May and June, July and August went swimmingly.  I managed through the treatments with success and, at each "third week" break from chemo, I got out of town - three times to the Cape and once to Maine.  The Maine trip, in particular, was fun as Vicki was able to join us!  She was home all summer but worked two jobs - so we didn't see her much. And now she's back at school so it's just the three of us again. 

 

I'm thankful for a peaceful summer, full of beaches and good reading.  I hope you also found some ease from your usual routine - a chance to re-charge your batteries.  I end, therefore, with the picture above - a photo I took at sunset on a quiet cove in Maine near "The Contented Sole", a restaurant with the most delectable mussels!  And just for fun, another shot below, from Back Cove, south of Damariscotta, Maine.  A typical scene on a beautiful summer day!

 

 

Wisdom

It’s been quite some time since my last post but that is actually because things have been going quite well. I had treatments on July 10 and 17, moving up to full doses and tolerating them quite well. I had to add a dose of Atropine to kill the in-chair reaction to Irinotecan, but that’s pretty minor. And overall, I’m learning how my body reacts to the treatment and hopefully will get better at countering the side effects. (Note: Atropine is a potion made from Deadly Nightshade, Jimson Weed and Mandrake, which I think means that the recipe can be found in the “Muggle’s Guide to Harry Potter.”)

On my off week, Robbie, David and I went back to Cape Cod for a few days and this time, we got to sail a boat much like the one in the picture from my last post! We returned for my next two treatments which were on the 24th and yesterday. So now I have the coming week off and hope to return to the Cape one more time. After all, what better cure is there to one’s ills than cool salt air, sandy beaches and fresh seafood?

In the meantime, I have been catching up on various items of personal business and doing some reading. One thought that I’ve been curious about lately is the definition of, or perhaps better put, the elements of “Wisdom.” It seems a topic akin to Justice Brandeis’ definition of pornography – I can’t define it but I know it when I see it.

Some “academics researchers” define the elements of wise reasoning to be 1) dialecticism — realizing that the world is in flux and the future is likely to change; and 2) intellectual humility — recognizing the limits of one's own knowledge. But this definition would lead to someone making a decision to never plan for the future, as it is both uncertain and one could reasonably feel that s/he lacks sufficient knowledge about it. But taking the (in)action to not attempt to plan for one’s future is surely unwise.

A more recent scholar posits that the 5 crucial aspects of wise reasoning are:

1. Willingness to seek opportunities to resolve conflict
2. Willingness to search for compromise
3. Recognition of the limits of personal knowledge
4. Awareness that more than one perspective on a problem can exist
5. Appreciation of the fact that things may get worse before they get better

This also leaves me flat as it addresses more of a societal philosophy built upon the idea that all individuals should act for the “greater good” of their circle, town, country or world. While I applaud that concept, it seems to me that acting for the “greater good” is but one aspect of wisdom, not the sum of it.

So I ask you, Great Sages, what is wisdom? And to ease the mental strain of thinking about that topic, above is a serene photo from last week’s visit to the Cape! BB

Sailing Into Summer

It’s been quite a while since I’ve posted but that’s all good. I did quite well with my ¾ dose, so much so that Robbie, David and I took a short trip to the Cape during my “off” week. There, we loaded up on the Cape’s three food groups – lobster, clam chowder and ice cream – and I even put on a few pounds! Last week, I did a full dose and it has again gone quite well (and all my numbers look excellent!) So, in short, things have turned around miraculously and I am looking forward to a pleasant summer – as I am sure you all are as well.

One little tidbit for you, though. For the first time, I actually saw a classic NYPD foot chase. While waiting for treatment, Robbie and I took a walk around the neighborhood and, while waiting to cross 54th Street at Lexington Ave in mid-afternoon, we suddenly saw a guy being chased down the street by a second guy, with three uniformed cops shortly behind them. The chaser, who was evidently an undercover cop, tackled the guy about 100 feet up the block from us and the three uniforms pounced on them within seconds. So, after all these years, and the thousands of versions of the classic police chase we’ve see on TV, we witnessed the real thing! Of course, we’ll never know what it was all about; was the undercover on a stakeout? Was he posing as a tourist and got pick-pocketed? Maybe a drug deal? It’s hard to say, but, broad daylight in an extremely safe area of NYC makes me wonder that much more.

In any event, I hope you all had a great 4th of July and have lots of fun planned for the coming months. FYI – the picture is from this trip to the Cape. BB

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