Amy R. Comeau Aug. 23, 1958 - March 3, 2009

Amy passed away on the Morning of March 3, 2009. She fought a brave and determined battle. In her last week, she was fully alert and aware, and grateful to the many, many people who reached out to her, both through this ongoing narrative of her illness, and her personal and professional lives. She had been almost unaware of the many lives she had touched in a positive way over the years, and was overwhelmed by the many cards, flowers, and messages she received during the previous three weeks, when she was only dimly aware of what was going on about her.

During that last week, Amy's face took on a beautific glow, a look of serenity and happiness. She got to speak to many people on the phone. Toward the end of the week, she said to me, "You know, this is one of the best periods of my life." As Amy's liver function failed, starting Friday night, she declined rapidly. At the end, on Tuesday, she was calm, without pain, in bed at home, surrounded by her family and their love, in the quiet of the early morning.

We will miss her terribly.

Albert Robbins (Amy's Husband)

Where we are

When I started this blog, I intended to keep it up fairly often so that people would have fairly forthright updates on the state of my health, but I’ve become very ambivalent about posting the past few weeks. I have been physically unable to post and even to meaningfully frame my thoughts for posting. Also, the more dire the news, the less I want to talk about it even now.

However, I wanted to resume on a from time-to-time basis because I have come to see how many people have expressed caring and love for me from all directions. Here’s the short version: Earlier this month my liver began to fail with the build-up of bilirubin and other toxins in my blood and it very much looked like my death was imminent within days. Luckily, the doctors in hospice have been very aggressive in treating what they can treat and I turned the corner about a week ago. They began daily drainage of the ascites and have found a way to get the ammonia buildup under control.
Interestingly, I have few to no valid memories for about a three week period of time. The memories I do have are not valid and I have virtually no recollection of much of what transpired. I recently went through the list of people who visited with me around that time period, and the overwhelming memory I have is a flurry of warm and loving hugs, as people left, so it’s clear that as I need some “play-date do-overs”, although I am not quite ready for that yet. I am still undergoing daily procedures to help the healing process along and this means that from time-to-time, as we fix one thing, there’s a hitch in the road (including a recent sprung leak we’ve finally gotten resolved).
Having said all that, the most important thing that I want to convey is that I am apparently a part of extraordinarily loving community. This ranges from an extraordinary team of doctors who value my life almost as much as my own family does to my synagogue, whose members have been bringing dinners every day for since early February, to dozens of folks from my work family who consistently show so much love and affection that I am moved to tears often. And then, of course, there’s my family... So I will try to post to the blog somewhat more often although I can’t promise to be able to do so with any regularity.
You are an extraordinary group of people.

Time for Hospicre

I know that it's almost a month since my last posting, but no news was good news. I know that this posting will sound a little abrupt, but frankly I am still in such a state of shock that I don't have time to make it pretty, or warm, or anything like that.
After a number of doctor meetings,it turns out that my liver is too fragile to go on with the chemo I had been doing or try another variant. So we decidided on chemo break. Currently my liver is failing and hospice has been called in, which we expect to start n the next few days.
This is, of course, hearbreaking for us, and there are things that could make these end weeks or days easier for all three of us. First, weeping on the phone or in person makes it so much harder. If you could get that out of your system beforehand, it is so much easier for us. When you weep, I can't help but do the same, and it takes all the energy out of me. Second, I have one of the best breast oncologists in the world who I trust implicitly. Please don't tell me about the miracle guy in South America, or the third world vitamin or herbs. I can't deal with that and won't.
Also, PLEASE PLEASE let Alix go through things her way. She hates being pitied and would prefer a simple hug. She, too, is having to go through very difficult emotions that she would prefer not to talk about at all.
We do want to see folks and I can see people in short intervals - 15-20 minutes -- Albert is keeping track of my calendar. Sorry if this sounds so demanding but this is the hardest process I'll ever do and I need this help. I know you'll understand.

Happy New Year

Well, I finished my first 3 treatments with Ixempra, and it has gone pretty well. My liver enzyme numbers are down, and I am definitely feeling a little relief from my protruding liver. Let's hope that my next set of scans, which should be in March, show some reduction in the size. The December scans were disappointing, showing growth in all the liver tumors, although one of the bone tumors had disappeared. I am down to 75 mcg of fentanyl, so in about 3 weeks, I should be off that stuff. My hair has not (yet?) fallen out on this drug, and I don't know whether to expect it to, given the reduced dose that I'm on. So far, so good.
We had a nice, quiet New Year's Eve. I expected to sleep through it but woke at around 11:30, so the three of us watched the ball drop starting at 11:59, and then went back to our regular programming....
Wishing everyone a happy, healthy, new year, and resolving to really live this year.