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