Some more Extra Good News!!! And a few grumbles.

We have some really fantastic Janet news! We learned today that she can have her ileostomy and her bowel perforation repaired Tuesday, August 21!

When we are pretty sure that all is well we can then go to the Washington, DC area to see several friends and then back to Turkey. Perhaps about mid October, but we are hesitant to make predictions, since the Roller Coaster Ride keeps changing out plans.

For example, I last updated on August 8th. On Thursday, August 9th Janet had a barium enema, but nowadays they use something else and is not the old barium from the past. This was to confirm that her colon is completely healthy and ready for the reconnection. They seem to call removing the ileostomy and connecting things back up the way they were, ‘a take down.’

Before they do the take down they would like to be quite sure that the entire intestinal system is in really good shape with no surprises. But, as they pumped the barium into the usual place, they took x-rays every little while to watch how the colon was inflating. Unfortunately, when they got to the middle of the transverse colon, they found the leak that they had been unable to find back in February.

Even though having whatever nasty fluid they use now instead of barium, leak out into the abdominal cavity is generally bad news, in this case we consider it good news, as now they know that there really was a leak and exactly where it was. Because, in February, they just could not find it. That is sort of like saying I know I left a time bomb around here somewhere, but I can’t remember where.

We asked the radiologist at the time, “Isn’t that dangerous having the fluid leak out into the abdomen?”

I hope that he misunderstood us, because his answer was that they did not use barium anymore, and this fluid is sterile, and very safe, and there would be no problem. The fluid may be sterile but the inside of her colon it is not, so she got an infection. Much like appendicitis.

The Seattle Cancer Care Alliance has many donors donate very nice things that the patients and their caregivers can enjoy. On Saturday, the 11th, we partook of a very nice two hour sailboat ride on Lake Union, a large lake near the center of Seattle.

Janet had been warned to be sure to report anything that might indicate the beginning of an abdominal infection. Of course, then with the power of suggestion, every little thing in her abdomen caused her to wonder, “Is that the beginning of an abdominal infection?”

Well, on Saturday, as we were walking back to the car from the sailboat ride, we decided that it was time to call the doctor. The consensus was go to the emergency room right away, which we did. We do this with more than the usual trepidation, because this was our fourth time to that Emergency Room, and the first two times left a tremendous amount to be desired. One would always hope that the emergency room of what claims to be one of the very top hospitals in the nation, would do everything perfectly. However, especially on our second visit, I will spare you the details at this time, but in our carefully considered opinion, they really screwed up big time, over and over. The result being that Janet lay there in agony for about seven hours, even though we repeatedly asked them to call the oncology department, because they were expecting us and knew exactly what to do and can start pain management right away. However this did not happen, as I said for about seven hours. That was a long and infuriating episode that I will save for another time.

Fortunately, since that visit many months ago, there has been a major shakeup in the emergency room management, and we were assured that it should never happen again. Even more fortunately, things went extremely well, just like they should have in the first place.

It turned out to be an infection, but caught at the very beginning, and by midnight Janet felt just fine and her temperature was back to normal, but she was on a 10 day regimen of antibiotics. They said that she could go home, but since she had an appointment with her surgeon on Monday at 3:30 PM, they strongly suggested that she stay there in the hospital until that appointment. Since she has insurance now that covers such things, and since that seem to be clearly the safest course of action, she stayed.

On Monday at about 2:30 PM, we decided to leave the room for the last time and walked down to find where we were supposed to meet with the surgeon, since it seemed the instructions of how to find his office were kind of vague, and it is a very large complicated building. I doubt if you can imagine the depth of our surprise to find the receptionist and be told, “Didn’t someone call you to cancel? It says that you are admitted to the hospital and we always automatically cancel appointments when a patient has been admitted to the hospital.”

Our first thought was that this meant that we would have to wait for weeks to get another appointment, and that that was particularly cruel and dangerous, since the very thing that we were seeing the surgeon to have fixed, had turned out to be dangerously defective. Remember the word appendicitis?

Actually when we found the leak, at about 10 AM Thursday morning, our first thought was that perhaps she should be wheeled into the operating room or right away and fix this leak at the very least. The very most being to fix the leak and take down the ileostomy. But, however the establishment decided to seemingly sit on their hands.

You might correctly assume that we have a long list of things that severely disappoint us about the University of Washington medical department.

So, even though the appointment had apparently been canceled for several days as far as the surgeon was concerned, but the hospital were Janet had been staying, in the same building had been telling her for those same several days that the appointment was good. Grrrr!

So, even though the appointment had apparently been canceled for several days and the surgeon had made other plans, he was able to see us for a very few minutes and without giving us any clue as to what he thought of the whole thing, he examined Janet. He and his Chief of Staff asked a lot of questions, and he told us that we would be called within a couple of days to let us know if he would do it. That call finally came a few hours ago and was very good news.

As I said at the beginning they are planning to repair the colon and reverse the ileostomy all in one surgery. As long as we have no new surprises, Janet’s plumbing should be correctly connected by Tuesday afternoon. We will then wait about six weeks to see if there is another bowel obstruction, since that is what has happened in the other two major surgeries that she had. If all is going well, then, and only then, we will try to quickly make plans to go to Washington DC / Baltimore and back to the boat.

So, even though there have been many agonizing hours of wondering what was going to happen, at the moment things look very rosy. Please feel free to send more prayers, good vibrations, whatever it is you do, because we need all the help we can get.

Dave and Janet

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One thought on “Some more Extra Good News!!! And a few grumbles.

  1. Roller coaster is right! I hope this turns into a smooth carrosel ride soon. Having one surgery sounds good, get everything connected and together at one time. We are sending good vibes for your quick recovery of normal function. You both are an inspriation in your handling of all the agravations and disappointments in the treatment of this disease. Clear sailing all the way to Turkey is due for you.

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