5 months of ups and downs - January 2012

Friends and Family,

Whew, what a rollercoaster ride these last 5 or so months have been! A lot has happened, and with each “event” occurring within a few weeks of one another, I put off posting to this blog until it became so daunting to actually tell the whole story that I’ve put it off until now.

In late September, I successfully underwent Y90 radioembolization on the right lobe of my liver. A month later, a CT scan showed that the Y90 had pretty much killed all of the new cancer spots in my liver – amazing for it to happen this quickly! It’s hard to say whether the procedure was completely curative, only time can tell that, but the Y90 killed all the new cancer that could be seen with modern techniques. The downside to the procedure has been prolonged, at times sharp pain to my lower right flank/lower back where the right lobe of the liver and right kidney is. This pain came on about a week after the Y90 procedure and hasn’t let up much since. The pain leads to pain medication, which leads to hard to control constipation. I’ve been dealing with constipation for the past 3-4 months with a bout of different medicines.

After a few emergency room visits and guesses at the pain potentially being caused by an inflamed, irradiated gall bladder or kidney stones (both of which have been ruled out for the time being), I started to develop jaundice 3 weeks ago. Jaundice is where your skin and the whites of your eyes turn a hue of “yellow”, not mustard yellow, but certainly not a normal skin tone that can be found at the cosmetics counter! The reason I developed jaundice was because one of my liver counts, bilirubin, began going up above normal levels. Bilirubin is usually excreted through the bile or urine – so when you aren’t peeing or bile is not flowing correctly in the body, bilirubin goes up and you can develop jaundice. The doctors did an ultrasound and looked in detail at the bile ducts in and around my liver to determine if there was any narrowing or blockage that would cause improper flow of bile from my liver. They saw some slight narrowing on the scan, enough to warrant going in to take a look.

So this past Thursday, I had an ERCP procedure where they stuck a camera down my throat, through my stomach and into the upper digestive area so they could see what was going on with the liver bile ducts. They felt there was enough narrowing to warrant placing a short term plastic stent in the bile duct leading from the right lobe of my liver into the digestive tract. Hopefully, this will fix the problem by allowing the bile to flow freely from the liver as needed. Unfortunately, the ERCP has side effects of its own – the most significant being temporary increased pain in the abdomen and liver area and doesn’t cure things over night. It can take up to a week for my body to show any results. The proof of success can be measured via blood tests to check the bilirubin levels. I have the first of those blood tests in the next day or two. I’ll be praying for positive results this week – at least a stabilization of the bilirubin and hopefully a decrease. The bilirubin continuing to rise can lead to liver failure and can be life threatening in the shorter term, so I have stopped all forms of chemo since early January in hopes of not irritating my liver any more so than it already is. I am in good spirits and will continue to fight against these set backs, but the increased bilirubin has made me more concerned than I can remember being lately. Oh and by the way, the 49ers made it all the way to the NFC championships – woo hoo! What a great run, producing the best pro game I have ever seen.

****Update from Tuesday: I wrote the above on Monday but didn’t get around to publishing it. I had a blood test and check in with my doctor today. The results were not what I had hoped or prayed for, as my bilirubin levels have continued to increase since the ERCP procedure. My doctors think I would have at least seen them stabilize or go down if the constricted bile duct (what the ERCP fixed) was in fact the culprit of the increased bilirubin counts. My total bilirubin counts have been raising a couple points over the past 2 weeks at each of the 3 day intervals where I get blood drawn – right now they are around 11.2, with normal being less than 1.5. My oncologist said there really is no bilirubin level where they start to get overly concerned, since it’s all relative to the rest of the liver functions – they have seen levels as high as above 30 in functioning patients. The short answer is they really don’t know what’s causing my bilirubin levels to go up or how to stabilize them at this point in time.

The ray of sunshine from otherwise disappointing results is that the rest of my liver counts are getting better or staying the same. Liver failure would come into play if all counts get worse over time and my liver started shutting down as a result. They are concerned about the continued rise of the bilirubin levels, but are buoyed by the fact the bilirubin counts are the only ones that are getting worse. This is a-typical and they aren’t sure what’s causing it. It could be general radiation damage to the liver, for which I’m taking a combination of high dose antioxidants (Vitamin C & E) as well as pentoxyflline. Pentoxyflline works to improve the blood flow in the body, especially in small blood vessels, by decreasing the viscosity of the blood. It is usually used for pain in the hands and feet, but may be able to help reverse any damage to my liver. The liver is also an amazing organ and could start to "heal" itself over time and stabilize the bilirubin on it's own - let's hope for that :)

At this point, it’s a wait and see game where only time will be able to tell what happens next. My doctors will continue to look for different, progressive ways to help offset the liver damage, but my well being over time is hard to predict at this point. I have to take advantage of each healthy day as it comes and deal with any hurdles that get thrown in my path – and I certainly will do that! I am more tired than usual and have lost a considerable amount of weight in the past 5 months (down to about 120 lbs), although my appetite recently has been very good. If you or any doctors you know have any suggestions on how best to attack radiation induced liver damage or high bilirubin counts, please email immediately with the ideas and I will take them up with my oncologist.

I’ve been slightly overwhelmed by the ups and down of cancer these past few months and have had to really rely on the support of my family and friends, you all! I wouldn’t be continuing the fight without you, seriously. As I promised earlier, I will take each day as it comes, cherish the good days, and will certainly do a better job of updating my blog more regularly.

Take care,

Rhone