Posting a quick note to say that Hugh and I are headed back to MD Anderson Cancer Center tomorrow. We learned only a day ago that the tumors have returned - again - and surgery is scheduled for Thursday. Stupid tumors!

We know very little at this point, other than we need to get them out and move forward, but I'll post again when I have more information.

Hugh won't be online for awhile, but I will, and I always read him all your notes. So feel free to communicate to him through here.

We're accepting any and all positive thoughts and prayers!

The Girl

Well the day finally arrived. Hugh had surgery today. We (Hugh, me and our daughter) came to the hospital at noon. At 10:00 pm two of us finally got back to our room. Hugh came through surgery just fine. There were two tumors and both were removed. One had begun to invade the colon, so a small portion of the colon was removed with the tumor. It sounds bad, but it's still going to be an easier recovery than the last surgery.

He should be able to eat again within a week (yaaay!) and he'll be in the hospital for about 5-7 days. Then we can fly home for the rest of his recuperation.

The doc looked around and found no other tumors, but he did remove some extra tissue that could be scar tissue from the last surgery (he said there was a lot). If any of it turns out to be desmoids, well then, they're already removed. Everything is going to pathology.

Our daughter and I grabbed a little to eat, had a bottle of wine (very therapeutic) and I'm back in the overnight recovery section to sit up all night with Hugh (he's sleeping). Ah, what we do for love.

We"re relieved, happy and watchful. It was an excellent result and we expect him to be very well for the near future. We won't kid ourselves, these may grow back again, but in the meantime, we expect to have a great quality of life and many fabulous photographs!

Here's the latest from MD Anderson. The tumor board met today and we then met with the doctor again.

Their radiologist says there are 2 tumors, not 6, based on the scans they saw. Our understanding is that they have all the scans, up to and including the most recent ones done at UCSF, so this was major news. Even bigger news is that they believe the existing tumors do NOT include the one at the site of the last tumor, which was going to be the "dicey" one to remove. They feel the tumors they see are very remove-able. In fact, they say that they don't even expect to need a plastic surgeon to do repair work on Hugh's abdomen (as the UCSF surgeon suggested) because they don't think the surgery will be that bad.

Of course they advise that no one can be 100% positive of anything until they are inside, but they feel strongly that these tumors can be easily removed and should be. We agree and have scheduled a date. Hugh will have surgery - at MD Anderson - on Sept. 23, 2008. We expect to stay in Houston for a week or so and then return home for the rest of his recovery.

We spent an hour in a Patient/Family Orientation presentation today and found the support systems and patient services here to be exceptional. In fact, we've already made a reservation at the Rotary International House that is attached (physically) to the hospital for our stay when we return. No shuttle buses, parking issues, etc. I'll be able to go back and forth anytime to Hugh's room from mine, get food 24/7, sit in the library, have a drink at the bar (!) or virtually anything else that we may need. You must be a patient (or family) to be allowed to get a room at the Rotary House, so everyone there is "on the same page" in dealing with a serious issue. We had dinner there tonight. Everything is designed around the patient and their families.

Tomorrow we're touring the lab and seeing the research being done on these tumors. Another advantage of surgery here is that Hugh's tumors will go directly to the lab - without freezing - for use in research. We've donated money (as have you) to [link], now we're going to donate tissue too.

We'll be home tomorrow night to start our regimen of good diet and lots of exercise to be ready for surgery.

I know you've been wondering what's happening here in Texas. Hugh got a nasty cold before we left and it seems to be getting better, but we're babying him to make sure. The hospital listened to his lungs yesterday and said he's OK, so at least he hasn't gotten bronchitis (yet).

We're doing OK here. What a complex! We saw our doc yesterday and as we thought from meeting him briefly in NJ, we like him a lot. We asked him everything we wanted to know and he was very helpful in answering in a direct and fully informed way. The doc at UCSF gave some of the same answers, but didn't explain them so that I understood why he felt that way and so I was never comfortable with the answers.

We talked about chemo and he said that the side effects from the chemo are ongoing and long lasting, some are damaging to other parts of the body and while it is effective in some of the people, it is not something we want to do as long as the tumors are operable. The UCSF doc said chemo wasn't worth it at all with these tumors and that's when he lost me. I've read lots of folks on the listserv who have had good response from chemo. But since these tumors ARE operable, at least from the 85% they can see on scans, it is worth having surgery. He also told us that it wouldn't be the same surgery as last time in that they do not expect to cut the intestines, reconnect and have stomach drains when he leaves the hospital. So all of that was reassuring.

In fact, he said that if Hugh continues to have more tumors, and it's very possible, that we could expect him to have an excellent quality of life - just as he is now - even if he has to go have surgeries again and again every 3-4 years. It's do-able. He even told us about a woman who had 13 surgeries over many, many years and THEN, hers just stopped recurring. That's the way these things are.

But he really made me feel so much better and I think Hugh as well, although he had already gotten to the recurring surgeries part and was OK with it. Hugh's case is being presented to the tumor board this afternoon and we're going back to the hospital to hear what they think. Prior to the board meeting, their top radiologist will review all of the CT scans from the very beginning and the pathology dept. will report on the tissue we had forwarded before we came. So we'll see what they recommend.

I think at this point that we're just deciding where & when to have the surgery. The doctor said we have 6-9 months to have the surgery because these are growing so slowly, but we'll do it this year since we've already met all of our out-of-pocket expenses for insurance already. As to where - we can go to UCSF, MD Anderson, or even Mass General or Sloan Kettering or UCLA, but all the others require more travel and consults and we're with one of the country's best experts right here. So at this point we're leaning toward having the surgery here because we're so impressed with the whole place and trust this doctor so much. (Anyone want to buy a photograph?)

Tomorrow morning we're visiting the lab where our doctor's wife is the lead researcher for DTRF trying to find a cause and a cure. She wants to show us the lab and her research. Her assistant even offered to come to the hotel and pick us up! They've been so nice.

So that's it for now. Hotel for hanging out, hospital for lots and lots of waiting, but home tomorrow night - yaay! My brother, sister-in-law & 21-yr old nephew will be here this weekend from Portland. Couldn't be better timing for something great to look forward to. Our oldest grandson started first grade yesterday. We called him and he told us about it and then said, "That's all I remember, is that OK?" LOL! Can't wait to see my kidlets and my fur kids!

I'm so excited that I launched my new business website today.

[link]

I love what I do and am thrilled to help others succeed!

On a personal note, the hubby and I visited with EmbersFromAshes this weekend and had a great dinner and much fun hanging out together.

Now we're off to Houston in the morning and our consult at MD Anderson. I'll post more info after our return.