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.

First Ixempra yesterday

My oncologist was wavering about giving me the Ixempra for a couple of reasons. She was at the breast cancer conference last week, and heard some anecdotal evidence where folks getting the 3 weeks on, 1 week off dosage (which is new and not yet "approved) had extreme fatigue as well as the usual side effects (nausea, hair loss, peripheral neuropathy). The way they put it was "too tired to blink". She wanted me to go to another treatment with a mixture of 3 drugs, two of which would be delivered 24x7 via a pump and a PICC line. There were a couple of other choices, too, one of which was an oral chemo, but with my tendency to vomit, she thought that was out of the question.
Basically, my view is that quality of life is not as important right now as extension of life. I want this drug to reduce the tumors immediately because that is the biggest threat to me and the size of my liver is in fact causing more quality of life problems right now. So I said, let's try the Ixempra and see how I do with it. So far, so good. I still am having the PICC line installed tomorrow, because they are having more and more problems accessing my veins each time.
On a more positive note, the clavicle infection seems to be clearing up. I have much greater range of movement in my arms/shoulders, and I have resumed the reduction in the fentanyl patch. Originally I was at 200 mcg, spent a while at 150 mcg, and have now moved to 125. I figure that in 5 weeks or so, assuming that everything goes ok, I will be off the patch altogether.

Long time since last post, I know

But I am uncomfortable at the computer, and have not had anything positive to post. Here's an update, in a nutshell...
a) I had a biopsy done of the infected area. They chose not to use any anesthesia for it, so it was excrutiatingly painful. Anyhow, it's a pseudomnas infection & I'm on Cipro for the next month.
b) I have had some progression. My liver tumors have enlarged the liver to the extent that even I can feel it and the stitch is back, inhibiting my ability to breathe deeply or even yawn without pain. The liver enzyme numbers are close to what they were when I was diagnosed in April.
c) I will start a new chemo - Ixempra - if my liver #s are good enough, Navelbine if they are not, and hopefully that will start this week or next.

Doing better all the time

Off the Bactrim & Kytril, tapering off the decadron. My head is much clearer and I am starting to have a little more energy. I do still have the clavicle pain and swelling but I am controlling it ok with the pain meds I have. I have to nap every day and I can't take on more than one or two errands or outings in one day yet, but I am building up to the bat mitzvah and I think I'll be ok for that. I may need to rest in between, and the Alger House has a little lounge upstairs that I may take advantage of from time to time during the event.

So, probably not an infection, but we don't know more

The ct scan came back, and Dr Wetherbee said that there's nothing there that he would see as consistent with an ongoing infection - no pockets of material (pus), no signs of toxins, fever, etc etc. He is going to hook up with my oncologist on Monday to go over his thoughts. Meanwhile, I am to stay on the Bactrim and other meds. The swelling and pain persist but are not so debilitating as they had been, so I figure I'll just live with it for now until we figure out if it's something important or not. Glad it's not an infection, was not looking forward to having to worry about where that was going.

New CT scan tomorrow

Looks like it is infection, Dr Wetherbee is sending me for new imaging study to get a better sense of what's what. I may need some sort of procedure to drain the infection, will know more after tomorrow's scan. Meanwhile, I am staying on the Bactrim, etc.

Infection's back...we think

The swelling & pain are back, have migrated to the right shoulder. I don't know if it's because I was using the arms more, or because we started to "step down" on the pain patches and steroids, which may have been masking the underlying infection, or what. I am going to see an infectious diseases specialist tomorrow, but it looks like I'm going back on the Bactrim. This time, we're not going to let the side effects run my life, so I'll be back on the steroids and kytril. Will post more when I see the new doctor.

Doing great

Here's how things are different from a couple weeks back: I can read (mostly magazines, still) , do my logic puzzles, watch TV without losing track of what's going on, get calls made and get things done. I am eating just fine -- but with the decadron, I have to resist the urge to just pull the chair up to the fridge and settle in for the day!! My mood has been significantly better, and I have been able to be much more present for Alix and Albert. Very happy about all of the above.

Update - good news

I had a brain MRI yesterday to rule out any tumors there that might have been causing the vomiting & some other symptoms. Results back today, no tumors (whew....). Saw the surgeon this morning, looks like the hole in my chest is closing nicely, he doesn't need to see me again until I am ready for a replacement port. Hopefully we can put that off a long while. Next chemo not til the 23rd of October.
So, a good news day! Healthy happy sukkot to all.

Ups and downs

I had chemo last Monday which went ok, and we decided to stop the neurontin, which wasn't doing anything positive and might have been adding to the nausea. Not sure if that was true or not -- have been terribly sick all this week -- but the withdrawal from the neurontin was its own nightmare. Anxiety attacks, insomnia, you name it, on top of constant nausea. According to Ruth, the nausea is not related to the chemo, but if not that, then what? Finally came up with a new combo-- decadron (a steroid) combined with kytril (an anti-nausea pill) which has given me a couple of good days. Fingers still crossed. Weight fluctuating, but at my lowest yesterday, it was 53 lbs from my starting weight in April. Gatorade is my new best friend.
Hair seems to be growing in, unexpectedly. Short thin fuzz, mostly gray. Will try to post more as I feel better.

OK, the "real" Amy is back

Doing SIGNIFICANTLY better the last day or so. Nausea is reduced to occasional queasiness, pain under control, energy level improving. I somehow turned into a totally different person for a while there, which was strange, to say the least. But I think you have the real me back...
I think that next week I am asking for the anti-nausea pre-meds before the chemo, because I was already week from the chemo related nausea before I started on the Bactrim, the combination of which was devastating.
We're working through the remaining details of the bat mitzvah, and I am starting to think this party will actually turn out ok. Of course, none of us have clothes yet, so maybe I should have put "clothing optional" on the invites.....

Not getting to the computer much

The stuff they have me on makes it difficult for me to focus so I'm not online much. I hope the antibiotics are working, but I feel pretty nauseated, weak, dizzy. Down 7 or 8 pounds this week.

Mostly good news

I saw the surgeon on Monday for a checkup and Ruth on Tuesday for chemo. Albert & I stressed to each of them that we want to treat whatever has been causing this pain that I've been having for more than a month, and not just keep taking the pain meds forever. The surgeon suggested that there may be an infection in the clavicle, and Ruth wanted to rule out a tumor, so she sent me for a CT scan on Tuesday. Good news is a) no tumor and b) no bone infection. Either of those would have meant 6 weeks of treatment, either daily radiation or daily IV antibiotics. Ruth and the radiologist are pretty sure that there is an infection in the soft tissue around the clavicle, and she is working with the infectious diseases folks to figure out whether to take a culture (which they do under CT guidance, argghh, more procedures) to determine what the infection is or treat "empirically", and just throw antibiotics at it. Will know more today. Other good news is that the first Gemzar/Carboplatin treatment brought the liver numbers back down to about 1000, from 4000. Good sign.

Catching up

Not too much to report this week... we had painters in all week and all they accomplished was the kitchen & bathroom. There was a lot of plastering needed. It really disrupted our day-to-day lives so we are not sure when we want to schedule the rest of the apartment. We also had intended to get the invitations to the bat mitzvah out already but now it looks like Monday. Arghh. I had lunch on Monday with my "lunch club" from work. It was great to see the crew again, and I can't wait to be able to do this regularly.
On the health front, Albert had a clean PET CT, for which we are grateful. The wound is starting to show signs of closure, and the pain has been pretty manageable. I have to say, though, that my ability to get around and do things is still very much diminished. I'm going to ask Ruth to refer me to another doctor who can address the underlying condition-- maybe a neurologist -- so that I can find out if there's something I can do besides pain control. Maybe there are exercises or massages that will help the inflammation heal faster.

Doing better

I think we may have finally gotten the pain under control (hope I didn't jinx it!) and I've been resting a lot more to try to let the wound heal up. My friends at work threw me a big party on Thursday, there must have been at least 75 people there, and it felt good to be able to say my goodbyes like that. I am a very lucky person to have worked with so many really good people with such big hearts. Haven't left the house much since then.... matter of fact, I think today might have been my first day out. I have to be careful because it's very easy to overdo things and get this pain in my shoulder/chest started up again.

The stitch is back

I probably mentioned at some time that I had a "stitch" in my side off and on for a few months before my cancer diagnosis, that turned out to be the liver tumors. Well, over the last 3 days, it's back. Ruth palpated it yesterday, and yes, my liver is enlarged again. So that's depressing, on top of all the other depressing stuff over the past week. I want to feel like we're moving in the right direction, we started gemzar/carboplatin yesterday directly into the vein in my inner elbow and that went fine. They were worried because gemzar burns some people going in. I didn't experience that. Sick this morning from it, though. I didn't want any heavy duty nausea premeds because I have been having trouble with the pain meds causing constipation and the nausea meds do the same thing - shut down peristalsis. May change my mind for next time if I am doing better in that regard. We also upped the fentanyl patch to 150 mc and will watch for 48 hours; if that doesn't do it, I have a script for 2x100 that I can fill, plus fentanyl lollipops for breakthrough pain. (Ruth told Albert to give me a lollypop if I'm crying, I felt like a four year old!) I have tried to wean myself of the percocet which doesn't control the pain as much as just knock me out and keep me from "regularity".
Also saw Dr. Vine who likes how the canyon in my chest is closing up. I still have to debride it 2-3x a day with the peroxide, and I'll see him in another 2 weeks. We will probably look to install a new port around that time.
Down about 45 pounds so far, luckily I had lots of extra.