No news is….

I’ll start with the good news – my CT scan (which is 18 months since my last surgery) was clean. This means the radiologists at Mt. Auburn did not see any visible tumor or changes since my last scan. This is a milestone – the longest I have gone between end of treatment and recurrence is 18 months. Since this last time I did not do any treatment other than surgery, the countdown began as of March 2006. We won’t go so far as to say “tumor free” but things are headed in the right direction.

I have the best intentions. I have written at least a half dozen posts for this blog over the past 2 months though none have made it out of my brain. By now I’m certain I’ve lost much of my audience, but I know you’ll be back. I planned to post an update when I had something new to tell you. I was waiting for the Sandostatin injections to kick and get things under control. I wanted to be able to tell you that I was now under 10 bathroom visits per day, that I no longer needed to seek out Kaopectate caplets, that I didn’t need to worry about having to take liquid opium on a plane with me to the Bahamas, that I was able to get on a plane to the Bahamas with food in my belly and no concerns about window or aisle seat. I could go on, but I think perhaps you may be getting the picture.

I’ve been on the Sandostatin injections for almost 3 months now and am now on the maximum dose which means three injections a day and there has been no noticeable improvement. I still have to take Kaopectate, codeine and DTO with each meal. I have had some good days when it seemed like maybe I was making progress but these were usually followed by a day spent entirely in the bathroom. The only change I made that seems to help a little is cutting back on my liquids. Instead of 60 or 80 ounces of Vitamin Water® I try to keep it down to 30 or 40 and walk the fine line between being healthy and being dehydrated and I’ve succeeded in avoiding any trips to the ER.

I saw Dr. LaMont a few weeks ago and we talked about my situation at length. He is frustrated that nothing seems to be working and that he can’t think of anything else to try. I have tried everything he could think of, except TPN (IV feeding). I told him that’s just not an option. It would mean I would not have to eat by mouth and that I would get all of my nutrients etc from overnight feedings. I could eat during the day but I’d suffer with my current consequences, so what is the point? It really wouldn’t be an improvement of my lifestyle because I still couldn’t travel and I’d be sleep deprived to boot. Basically he said that I have Short Bowel Syndrome, diagnosed by ruling out every other conceivable reason for 15+ trips to the bathroom per day. We don’t know exactly how many feet of small intestine that I have left, but Dr. Nauta last estimated it was somewhere between 4 and 6feet, but the only way to know for certain is to measure it by hand, which isn’t an option until my next surgery. I have operative reports for all of my surgeries, but they don’t all contain the exact measurements of what was removed. It doesn’t really matter because even if it is “officially” diagnosed as Short Bowel Syndrome, there is no other treatment or medication option other than what I have done, but I would like to be able to put a label on my condition. “I have SBS caused by PMP, so I take DTO….”

A few days after my appointment Dr. LaMont left a message that he wanted to talk to me about some ideas he had. After a bit of phone tag and a 2 week vacation (on his part) we connected. I got my hopes up, thinking he had come up with another test to run, or another drug to try. But no, all he wanted was for me to run a bunch of blood tests because he is concerned of the effects this chronic diarrhea is having on the rest of my body. He knows I am tested regularly for my tumor markers and cancer cells, but he had me run a bunch of other tests – potassium, vitamin D, carotene, etc. Bone density is just one of the problems he is afraid I am going to experience from the lack of nutrients. Fortunately it was time for my quarterly check up with Dr. Lange so I had the nurses at Mt. Auburn run these tests for Dr. LaMont.

Besides this blood work, I had my quarterly CT scan. Barium…yummm. That stuff just never gets any tastier and my body just never seems to adapt to it. The funny thing is that I know several people who have PMP who cannot take the barium because it stays in their intestines and causes bowel blockages. Me, I have the opposite problem – I have to take 15 ounces the night before and 15 ounces the morning of my test, with no other food or drink in between. Needless to say I’m quite cranky by the time the test is over – I’ve been going to the bathroom all night yet I haven’t been able to eat or drink. This time I had Pat get me a bagel and water and be in the waiting room after my scan. I also talked with the tech who agreed that given the reaction I have to the barium; I can skip the night before drink before my next scan. Yay!!

Dr. Lange was pleased with my CT result – though as usual neither of us is doing a happy dance. The blood tests Dr. Lamont ordered were all fine which means I am not malnourished and I seem to be absorbing enough nutrients. However, my tumor markers rose a bit more. These are 4 tests that are supposed to indicate presence of tumor in the blood – even though PMP doesn’t spread through the blood, these markers have been accurate. They’ve been on a slow rise since my last surgery, but since there is no tumor visible on the scan there isn’t anything we can or will do. They have never returned to normal levels since my initial diagnosis, and while these markers are labeled “high” they aren’t in a danger zone yet. We debated sending the scans and blood markers to one of the PMP specialists, but after further discussion we decided against this. Even if they were able to spot something on the scan that they team at Mt. Auburn missed, there is nothing to be done unless the tumors cause some sort of interference. So we’ll continue with the watch and see and re-scan in 4 months.

And I promise to write more often – even if I have nothing to say. Next week I see Dr. LaMont again and maybe he’ll have some good news or something new for me to try. I am getting antsy and feeling the need to travel, especially since Pat just spent 2 weeks in Shanghai without me!!!

Posted by jean at September 5, 2007 10:18 PM