Blame it on the rain…

Actually that should be sun. Blame it on the sun. We have had an absolutely beautiful month of May here in the northeast, which has led to me spending much of my free time outside in the yard, in the garden. I’ve discovered that I enjoy gardening. And I’ve got lots of dirt to play in. My dad came east to help me get me started – which actually meant he did all the hard prep work and I watched and took notes. Together we made several trips to the nursery, picked out lots of low maintenance plantings, and planted. And planted. And watered. And mulched. I discovered that I may not have a black thumb after all and digging in the dirt is a great way to relax.

Now onto the medical update. I had my quarterly CT scan, blood work and appointment with Dr. Lange in April. We did 2 separate scans, a chest CT in early April because of some pain I was experiencing, then the abdominal scan at the end of the month. There was no sign of new growth on either scan. We have not yet figured out the cause of the chest pain, so we’ll watch and wait. The abdominal scan showed no change since January. There are 2 approved radiologists who will do all the reads of my scans going forward. Dr. Lange and I are still debating the merits of sending the scans to one of the specialists to read since Mt.Auburn’s team has not been successful at identifying these tumors before they cause me problems. However since I’m feeling fine and having no difficulties, I think for now we will leave well enough alone.

My tumor markers are a slightly different story. They continue to rise. Not huge amounts, but it’s still the wrong direction. We’d rather see them drop or not change at all. Not much we can do about this except continue to monitor which is what we will be doing.

We had our usual appointment with Dr. Lange. We both know that this is my “danger zone”. All of my recurrences have happened by 15 months after last treatment and I am approaching that timeframe. So to avoid talking about this touchy subject, we discussed my ongoing bathroom issues. The chronic diarrhea that continues to plague me, sends me running 5 minutes after ingesting food, and basically rules my life. He is stumped, but he did make a suggestion.

He found me a new gastroenterologist. I was hoping to find a doctor outside of Boston to avoid the 3 hour doctor appointment (1 hour drive each way to/from Boston, plus 1 hour in the appointment.) but this new doctor is at Beth Israel. His name is Dr. Lamont. Dr. Lange gave him my basic background. I called him on Friday to set up an appointment, he squeezed me in the following Monday and by that Thursday I already had some answers.

Pat and I were very impressed with Dr. Lamont. He spent an hour with us, listened to what we had to say, asked us questions, asked me to explain appendiceal cancer and my surgeries, made suggestions, and expected us to ask him questions. He was impressed, not intimidated by our knowledge and research and is more than willing to take on a challenge like me. We devised a simple plan – first test me for all the run of the mill issues, typical causes for diarrhea, check for bacteria, etc. Much of this was done by simple blood tests; others required a little more participation from me. Dr. Lamont told me to call him that Thursday for the results of my tests. I did and he returned my call within 30 minutes. Amazing….

I tested negative for everything. I have no parasites, no bacteria, no salmonella, and no c-diff, nothing in my system that shouldn’t be there. The bacteria that I have are in just the right quantities – no bacterial overgrowth. This really wasn’t surprising to either of us, but we wanted to make certain we covered all of our bases. We were hoping that perhaps my problems could be resolved with some antibiotics, but that was not to be. So, by process of elimination we have diagnosed me with “Short Bowel Syndrome”, which basically means I do not have enough small intestine left to process food as it goes through my system. There is not enough colon left to drain out the liquid from food as I digest it, hence the diarrhea. There really is no way to resolve this. The best we can hope for is to find a way to control it.

The plan for now is to continue my current medication regiment and try adding in some additional medications or supplements. So this month it’s my usual – Kaopectate (though we are trying to find a replacement for this as I run out of my supply), codeine, dto, and apple pectin with the addition of probiotics. These are “good” bacteria, which can be found in some yogurts, but also can be taken in pill form. I am currently taking these in pill form twice a day.

If probiotics don’t work, the next thing we will try is Sandostatin. This was the injectible that I used back when I was on Erbitux. It worked OK when I was on Erbitux, but we think perhaps it might work better without the Erbitux. It would mean twice a day injections for awhile and lots of black and blues. But that would be a small price to pay if it worked.

For now I’ll continue with the probiotics until my next appointment with Dr. Lamont which is sometime in early June. And my next CT scan and blood work aren’t until August. I’ll be back long before then.

Posted by gasbarro at May 31, 2007 10:26 PM