I had several CT scans over the 18 days they kept me there, and wrote this then after I was home: Ever since the surgery the docs have been worried about a little area that had some fluid build-up they were concerned would become infected. They wanted to put a drain to the area but it was very small and they couldn't reach it. They checked it by CT scan several times in the hospital. Then we did the CT scan to check it again on Thursday night, and the result was the area was now larger, but they could get a drain into it, which they did yesterday afternoon. They were able to ID the bacteria, and I'll be starting two more antibiotics today. They also were able to drain lots of collected fluid off, and we have to empty my collection bulb several times a day. Overall, it's a very positive sign, because everything else was doing just fine.
I was on clear liquids and fed by j-tube for 6 weeks at home. Had solid food for a few days in the hospital, but then when things weren't healing right, they took it away.
I had an appt with my surgeon the day before the JHU clinic. I was complaining of swelling and pain at one site on the incision. He didn't think it was important (hadn't looked at the CT scan done that day), said it might open by itself. The next day at JHU they said it should be opened, and they would do it if I wanted to participate in their trial (which I did). So, a surgical PA who 'loved pus' opened it, and then taught my husband how to pack it each day so it would heal properly - which it did in a week (he's so talented!). And we returned to JHU to start the trrial (radiation + xeloda + tarceva), but by then another infection had popped up around the j-tube site, and I couldn't go on the trial, just did standard of treatment.
We lived in a rental apt in Baltimore for 6 weeks while I had my treatment. The first two weeks were OK – and then the fatigue hit and I did little else but sleep. Not much diarrhea until the very last week – but they eventually admitted that most folks had that reaction. We arrived for treatment on the next to last day with me having run at both ends in the car. George asked for help and they came right out for me with a wheelchair, and got me to a bathroom to clean up, went in search of clothing for me, etc. They were used to it.
In January we headed west for a vacation in California/ Arizona, mainly to visit the Tucson Gem and Mineral Show, an item that had been on my do list for years. We had a great time, I got around very well, I had returned to swimming and was feeling pretty good.
Then we returned and I started Gemsar chemo. I had a lot of side effects, including my hair falling out (not a common one). We stopped in late April and went on our targeted trip to Curacao with son and DIL and grandchild and the other grandparents. Had a wonderful time – enjoyed the snorkeling, but a few weeks after returning was in bad shape with a rare bug that I may have picked up in tropical waters and threw me in the hospital for a few days.
It has really been downhill from there. A CT scan in at about 14 months showed some suspicious pulmonary nodules, and PET and biopsy have confirmed that they are mets. Meanwhile, I have developed pulmonary embolisms, which cause severe shortness of breath and fatigue. They may or may not be cancer related. I am now on a new chemo regimen – xeloda and oxaliplatin. I start my second round tomorrow. Survived the first round reasonably well – doc says if I’m only having a few bouts of the runs a day (and it’s not quite that many, but they usually are incontinent which is darn annoying, and has me wearing diapers.) it’s not that bad. We’ll do another round and then check the scans in January to see how we are doing.
So that's my story as of Dec. 29 2008. E-mail if you want any other info.