Henri's Blog

I am sorry to let you all know that Henri passed away peacefully on Saturday afternoon. His parents and I and Mona were with him, as was our wonderful hospice nurse Chris. Henri had been sleeping continuously since about Thursday, and he was not in any pain when he went.

A casual wake is planned for Sunday, September 6, from 10 am to 8 pm at our home. Anyone is welcome to drive or fly here if you want, sign the guestbook, hang out, tell stories, whatever. Friends from our Phoenix days are encouraged to wait a few weeks, since Mona and I will be flying down for a similar wake at Juan and Michelle Trujillo's house. Details on that will follow.

Henri's cremains will be split between a lovely local cemetary's cremation garden and his home country of Lebanon.

What can you do? If you feel compelled to give money or flowers, I encourage you to send a donation to Whatcom Hospice, which has been a wonderful resource for us for the last few weeks, and will continue to follow up with us for another year. They have a foundation to help pay for the things they don't cover, like certain medications and supplies, for patients who can't afford them. And they are raising money to build an inpatient facility for people who, unlike Henri, don't have a big comfortable home and a family with the time and energy to be caregivers. Or, consider giving to your local hospice. Or if you have a charity in mind that you think Henri would want to support that's fine too.

Here's what else you can do: help me to be Henri's personal historian, on Mona's behalf. Go into your attic (actual or virtual) and find all your old pictures of Henri. Send me a CD and hardcopies. Write down the stories you remember... not mushy stuff just about how great he was, but things that will really help Mona understand what kind of a man Henri was. Give her clues as to what it would have been like to know him.

(I remember once he was riding to work at Cisco on his BMW motorcycle, and he got pulled over for going about 90 mph on the freeway and crossing about 4 lanes of traffic and the gore point without signaling. Then he couldn't produce his registration OR proof of insurance. Somehow he ended up getting a warning, and chatting amiably with the police officer about bikes. I wondered if later the cop was shaking his head to clear it, and asking himself if he might have just met a Jedi master. Henri always had this effect on police.)

There is no hurry on the pictures and stories. Please take your time. I know it might hurt.

-jill

Henri has started with hospice. There's not too much I want to say about that right now except that he and I have always known when something was right, and this feels like the right thing.

Bed and other miscellaneous equipment gets delivered today. They are sending a social worker to help with paperwork, and some kind of spiritual counselor person, and later we'll get the acupuncturist and maybe a massage therapist. They even have a notary who will come out to the house, which is nice. We'll try to keep you posted.

-jill

So, kids, it's time to shift paradigms a bit. I am in charge of band-aid ripping, so it falls to me.

Many of you have been wondering how the bowel stent is going. It has definitely helped Henri clear his backlog and start eating better. He hasn't been able to gain weight, though, and in fact he is still losing a little bit. He is down in the 122 lb range -- about 60 lb down from last fall before he got sick. Low weight means he has a high cancer load and the cancer is eating all the nutrients that the rest of his body should be getting, and it also means he is not strong enough right now for chemo. So, without speculating on probabilities, here are some possible future scenarios:

1. Best case scenario. Henri continues to recover from radiation, and the radiation continues to shrink the primary tumor (it takes a couple of months to see the full effect). He feels less tired and eats better and gains weight. He gains enough weight to start intensive chemo again, not with the drugs he was on before (we have pretty much killed all the cells that were receptive to that combo), but with some other drug combo. Tumors shrink and stop spreading, and eventually the remains of the primary tumor can be surgically excised. Henri dies of a head injury from skiing into a tree at age 85.

2. Good case scenario (probably more likely than #1). Henri continues to recover from radiation, and the radiation continues to shrink the primary tumor. He gains a little bit of weight and goes on a less-intensive chemo (like Tarceva + Xeloda). The goal of this combo would be to slow or maybe stop the growth of the tumors. Side effects from Tarceva are mild and tolerable (most people get a bad rash on the face). Henri slowly gains weight and strength and eventually goes on a more intensive chemo.

3. Worst case scenario. Maybe not worst, but bad anyway. Henri cannot gain enough weight and strength to go on chemo, or he tries Tarceva but it is not tolerable, especially considering that it is unlikely to help much. We sign up with hospice and agree not to seek further curative treatment. They bring us equipment and drugs and so on, so that Henri can stay at home and be comfortable for the remainder of his life.

We met with a hospice nurse this week, who was very nice and answered all our questions. If it becomes clear that curative treatments have failed, hospice seems like a very nice service. Apparently we have a good hospice here.

OK, so you may feel a little bit blindsided by this post. If it makes you feel any better, we feel a little blindsided too. We're still trying to work through how we came to be at this point, but of course it doesn't really matter. Maybe in a year or two this story will have a little more shape and make more sense. Right now it's a little bit like a bright light that you can't look directly at.

Henri has been very tired, but he and I appreciate your positive messages.

-jill

Henri had a colonoscopy yesterday, and they placed a bowel stent. Actually, it wasn't much of a colonoscopy, since his blockage is very near the end of the colon, and the camera wouldn't fit through it. The stent immediately expanded on either side of the blockage and will take a couple of days to fully expand in the middle. So, within a couple of days he should be able to start working through his backlog. Henri thinks he has been really feeling the blockage for at least a few weeks, although he thinks it has been there and causing problems for longer than that.

The procedure went smoothly, and although they had planned to keep him overnight in the hospital, he ended up coming home last night.

So, short term he will of course lose some weight, although only from his belly, which has been pretty distended. As long as no other blockages show up, he should be able to get down to eating lots of good, fatty foods, and pack some weight back on. He needs to gain weight in order to tolerate serious chemo. In the meantime he will be starting a new chemo regimen, with a new drug, soon.

-jill

Last Wednesday, Henri's oncologist Dr Lin popped in on Henri's appointment with his palliative care nurse and became concerned about Henri's continued weight loss. Since cancer cells burn a lot of calories, he was concerned that the cancer may be growing and/or spreading despite the radiation therapy. A CT scan on Friday confirmed his suspicions. Henri's primary tumor has grown slightly, the liver tumors have grown and more have appeared, and new tumors have shown up on Henri's bowel.

This was the calculated risk involved in stopping chemo for radiation therapy -- that it may or may not help the primary tumor shrink, and that it would not be treating the metastases at all. It is still too early to say whether the radiation will end up having shrunk the primary (it takes a couple of months to see the full effect), but right now we cannot let the metastases continue to grow. We know that chemo works so we are going back to that as soon as possible.

The new tumors may be constricting Henri's bowels, which could help explain his bloating and intestinal pain. He will be seeing his GI doctor, Dr Saunders, this week (we hope) and may be having a colonoscopy to determine whether the bowel is constricted and whether a bowel stent might be indicated.

He will also be seeing Dr Lin Tuesday to determine a course of chemo. We are optimistic that as he recovers from radiation he will start to feel better and more energetic, and that when he starts chemo again his tumors will start shrinking again, as they did before.

Radiation has been a pretty rough ride, and it's disappointing that it didn't work, but on the other hand it's nice to have it over with (a week early). It was a good experiment but we probably won't be trying it again for a while.

-jill