Complications...

The repercussions of my illness have been vast. My loved ones and I have been through a lot and have learned allot along the way. Treatments both traditional and alternative have been exhausting, and as new challenges rose up, we have adapted, educated ourselves, made decisions and then attacked with all we have. And happily, we have been largely successful, demonstrated solely by the fact that I am still here counter to all original predictions.

These last couple of months have been a challenge, 1st dealing with the intestinal ulcer and bleeding, which turned out to be just the beginning of a variety of other issues that have emerged just as we were starting to allow thoughts of me having beat this cancer slip into our minds...

It turns out that the location of the original tumor is the cause of all my recent problems. Because it encased a major artery in my gut, it made me inoperable, and now two years later it seems that swelling and scar tissue from the interoperative radiation operation I had last year is constricting the artery and is causing my new problems. The constricted blood flow has caused portal hypertension, meaning a backup of blood and fluids is causing veins in my gut and esophagus to swell to a very large size with the risk of life threatening bleeding. Right now the veins in my esophagus are almost blocking the passage way. I was told by my local GI doctor that my only treatment was to take beta blocker drugs for life that would lower my blood pressure to reduce the risk of bleeding and I had to avoid all physical activity that might raise my blood pressure...No digging in my garden, no carrying anything heavy, no building, no strenuous activity of any kind. As a maker and a teacher this has been a terrible fate to come to terms with. And to make it worse, the drugs cause terrible fatigue, so I have been taking naps all day and can barely teach. These past few weeks have been some of the most challenging of our journey. Really depressing.

We decided to do what we did when I was first diagnosed with this disease: to use all of our powers to find the best people in the field and see if there were any other options that could help or at least ease some of my symptoms so that I could improve my quality of life.

Through my MGH oncologist we met with some liver specialists who discussed my case with the MGH team which includes lots of specialists: my oncologist, surgeon, interventional radiologists, and liver specialists,etc... and we received a call the day they met saying that they think they can put a permanent stent into my portal vein that has the potential to reverse all of these problems.

Things are now moving very quickly. Today I had almost a gallon (8.5 lbs.) of fluid drained from my abdomen (ascites, another side effect), and tomorrow I get another CT scan to make sure that the cancer hasn't returned and to provide a map for the radiologists to figure out how to get the stent in place. (we just had a clean scan in Feb. So we are hopeful that I'll be clear) There are still things that could go wrong or make this not happen, and the procedure will be dangerous due to my issues in that part of my body, but just the fact that the team thinks they can do it and there is a chance to reverse this and give me a more normal life feels like a warm hopeful light has just been turned on inside me.

I'll try and update this page more as things progress...It's been hard to write when there was only darkness...

Today...spring blooms in my garden and also possibilities....