These are 2 updates I sent to our friends and family this past week. Since I know some of you among our virtual family are following Ed's progress, I wanted to let you see what has been happening.
Hello Again Everyone:
I am getting lots of emails from folks asking how Ed is doing, so I think it is just easier to send out the big emails again with one message.
So, the first week at home for Ed has been like a roller coaster, as we might have expected. The news of the week has been more pain than experienced in the hospital. I think the 1-10 scale of pain is a bit like the Richter scale, climbing exponentially and not in a direct line. Ed has had a number of the 'Big Ones' this week, usually in the 4th hour of his pain pills when the effect of the pills is wearing off, and it is too soon for the next ones. Each day/night, there have been some pretty major pain attacks. The effect of those and the medicine is that he mostly, at this point, naps off and on, listens to the radio, and occasionally plays for a few minutes on his IPhone. He cannot really concentrate long enough to read or to watch movies.
Every day, we have had a visitor or two (which is the pace I am keeping it at this point), and those visits have been a real plus for him (and me). For those who would like to come by over the next several weeks, mid-day to 4 or 5 seems to be the best period to visit. The 50 or so cards he has received are hanging next to his bed, and he reads every email all of you have sent. Thanks again for all your support.
He has had a prevailing, off-and-on fever. Yesterday, the doctor did blood tests and informed us today that there is an infection, probably around his internal stitches, one of which has come a little loose (which is not all that unusual and will probably heal over itself). He is now on 2 different antibiotics and will have more lab tests of Friday morning to ensure his white blood count has come dramatically down. If not, he will probably be in the hospital again for a couple of days to get antibiotics intravenously, but hopefully that will not be the case.
Ed is eating well, and his ileostomy is performing perfectly. We both are looking at this as a journey that has a definite end (about April 1) and a happy ending (no cancer). So, just like we extend ourselves in hiking up and down rocky, rainy Alps trails, we are trying to see this as just another adventure travel trip.
To all of you, a most happy Thanksgiving. Certainly, we two will be full of thanks for our friends and family, for screening tests, and for each other.
Eddie & Ed
UPDATE SENT 11/28/09:
Good Sunday Morning to All:
I feel like the medical center spokesperson who shows up at the podium with the latest update on some celebrity. Or, maybe I am the script writer for another episode of some TV-medical series. In any case, stuff has happened since we last gathered together in this Internet-virtual room.
Between Tuesday and Friday, Ed got worse by the day. I now know infections are not a good thing. By Thanksgiving dinner, he could barely make it down to dinner (which of course was an amazing spread, if I say so myself ... even if the feast was only for the two of us), and he was pretty much too weak to eat. (That was the first time since coming home from the hospital he had been that way at dinner.) And during that night and the next morning, his body was ejecting the results of an internal abscess that I won't even begin to describe. So it should be no surprise that the Friday morning blood test at our local Kaiser showed the white blood count had not gone down as a result of the two antibiotics he was taking, but had in fact gone up.
By 7 p.m. we were checking into the San Francisco Kaiser hospital again, arriving at the room across from the one we were at before, and feeling very 'deja-vu-iah.' (The nurses all remembered us ... probably for the 4 pounds of Sees Candy we had left them.) The lucky news was that our beloved and trusted surgeon, Dr. Stricker (who had gotten a hair cut and looked quite dapper and cute!) was on call at the hospital all weekend (Thurs. - Sun.) since this was his annual holiday weekend to take such a turn. Yea for us because having him right there has helped this rather sad chapter in our saga take a turn for the better.
After a night on all kinds of drips (antibiotics, pain, etc.) and going back to no food or drink, Ed went for a CAT scan mid-day on Saturday that located and sized the infection. At 3 on Saturday, Ed was back in the operating room under general anaesthesia. There was no cutting this time -- just probing, camera-work, tubing, draining, washing out, etc. More things we should not go into detail about (as if I haven't already, right?).
The doctor then visited with me for almost a half hour, detailing what he had seen, what he liked about what he saw, and what he planned to do. (I love this guy.) Bottom-line, the tissue around the break in the suture is looking very healthy, once all the abscess was removed. The colon that was really stretched to the max to join the sphincter and to replace the now long-gone rectum is looking wonderfully healthy. He placed two flexible tubes up the bottom to the operation spot and will keep them in place for a few days to be sure any new fluid finds its way out quickly. Ed is also on catheterized again for a few days. And the doctor is going to keep him in the hospital for 5-6 days to be sure this infection is licked and does not return.
Latest good news this morning as of an hour ago: The white blood cell count is back to normal, which is pretty amazing to me since it was still twice normal yesterday afternoon. I guess getting out all that infection crap was a good thing!
So, my friends, Ed is feeling MUCH better even if he once again has about a half dozen or more tubes going in and out of him. He will return slowly today to normal food. He will get to see his oldest daughter Shannon every day this week in the evenings since she only lives .25 miles from the hospital. And, he gets to listen to me read to him each night a book of comic essays by Scott Adams (aka "Dilbert") that we have been enjoying during these hospital stays.
A final word for equality:
I cannot tell you how wonderful it has been to be in a state, city and hospital system where not one person has blinked an eye every time I walk in any where with Ed or where I call or show up and say I am his spouse. The doctors, nurses, receptionists, social worker, medical records clerks, etc. have each and every one treated me with respect and as the person who of course should be monitoring and managing Ed's health care. I cannot imagine how much more difficult this whole situation would have been in most of the other states of this 'free' country. In many, I would not have been allowed in most of the offices. I certainly would not be called by the doctor, emailed with the test results, or allowed to ask anyone, any question and get it answered. We must all fight and demand for full equal rights for all our citizens -- especially when it comes to health and life care.
Again, thanks for your interest, care, and prayers/support. You are totally energizing Ed and me.