Sunday, November 29, 2009

MORE UPDATES ON ED (Now back in hospital)

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.

SENT 11/24/09:

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.

Much love,
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.

/Eddie

Wednesday, November 18, 2009

Report on Surgery and Recovery Thus Far

I am the ‘E’ Ed refers to often, and the writer of our travelogues, recipes, poems etc. I am his husband who is here to report on his health status. Bottom-line, the surgery for the cancer seems to have been a major success. When, after the six-hour surgery last Friday, I first saw walking toward me a smiling doctor, I said, "You must be exhausted (given the surgery was supposed to be only four hours). He quickly replied, "Actually, I am jazzed! I met in every way all the objectives I had for Ed's surgery. He is going to be great."

So it seems that the doctor and Ed were deemed to have success through the doctor's knowledge and skill; Ed's positive attitude; and all folks’ good wishes, many emails of encouragement from around the world (which Ed read faithfully as I forwarded them to him and even read to him as we waited last Friday for the anesthesiologist), and certainly the many prayers from almost every religious perspective that you, our wide range of global friends, represents. Thanks to all of you for your interest, concern, and love.

Our surgeon believes he removed all the cancer, having been able to take out enough of the rectum as well as the lymph nodes surrounding the tumor hopefully to remove any wandering cancer cells. He hopes and expects that biopsy reports will confirm that the surrounding lymph nodes were cancer-free, which, if true, will indeed mean no chemotherapy or radiation. He was able to do some of the surgery by laparoscopy (aiding recovery), but he did have to do some hand-assisted surgery to suture the large intestine to the sphincter valve. He then did the necessary steps for a temporary (probably two months or so) ileostomy in order to allow the colon to heal thoroughly before being put back to use.

Ed has had this week multiple tubes coming out everywhere. We entered together the prep area last Friday morning at 6:24 a.m. I got to stay with him until 8 a.m., which included a final visit with our incredibly nice surgeon. The surgery began around 10 a.m.. I got a notice at 1:30 that things were going well but would take two hours more than expected. I and Ed's parents saw the surgeon as he came out of the operation about 4:10. I finally welcomed Ed to his large, single hospital room at 8 p.m. He was totally alert, joking, and relatively pain free. We talked a lot. He just then just held my hand for about two hours as nurses came and went constantly. All are extremely gracious and kind with him and are both men and women of every age, color and ethnic background (very San Francisco!).

The last few days have gone remarkably well. Ed has mostly reported the pain level at about a ‘2’ on a 10-point scale. He has been walking around the hallway a couple times a day since the first day after surgery. Slowly and each day, more tubes are coming out of his body. He had nothing to eat or drink the first three days but this morning, he is up to ‘soft foods’ (i.e., cream of wheat, mashed fruit, one piece of white toast). He now knows how and is adept at managing his ileostomy quite well. Overall, he, I and all the doctors/nurses could not be more happy of his progress.

We do expect he will be coming home tomorrow from the Kaiser Hospital in San Francisco. He will then be totally off from work until at least the end of the year or even the middle of January. Sometime in late winter or early spring, he will return to have follow-up surgery and another hospital stay to remove the ilestomy and return him to normal functioning.

Again, thanks for all your support. Look forward soon for Ed to be back to blogging.

Thursday, November 12, 2009

Just what the doctor ordered

Being away for ten days after Ed's diagnosis/prognosis of and for cancer and just prior to his surgery on November 13 was really the best thing that we could have done. The fun we had every minute while in Nashville and Chicago was just what (literally) the doctor ordered.

First, The Theatre and Other Productions/Entertainment
Having the opportunity to sample the theatre of Nashville and Chicago was really special, and we made our way to as many of the known and renowned venues as possible.

We saw five plays, one opera, one comedy show, and one musical revue/show -- not too bad for ten days. And for the theatre, there was only one disappointment with all the others being from excellent to best-of-the-best.

The Lookingglass Theatre Company is a well-known collection of multi-disciplined artists who create and perform original, story-centered theatre that is often physical and may involve water, dance, 'flying,' and other unusual techniques. Having created over 50 world premieres already, the company's latest is “Fedra, Queen of Haiti”, written by company member J. Nicole Brooks, who also stars in the title role. Taking this ancient Greek myth and swirling it into an unspecified future date when Haiti is the dominant power of the world, Brooks and company have created a tale that is in every moment electric, mesmerizing, and progressively chilling. The acting, directing, lighting, set design, and the play itself are all stellar. Ed and I agree that this is among the top five productions of the eighty we have seen this far this year; and we both hope that Berkeley Rep will bring this production to its next season, as they did Lookingglass's Metamorphosis several years ago.

Almost as stellar of a production is currently at the Goodman Theatre, another award-winning theatre of Chicago that sends productions regularly to New York. The world-premiere “High Holidays”, written by Chicagoan Alan Gross, is -- in my opinion -- the Jewish version of “August, Osage County”. A family of four (two brothers and their parents) approach the bar mitzvah of the ill-prepared, younger son as we, the audience, enter their home three weeks before the big date. Soon, every audience member present is suffering from aching sides from laughing so much; but like “August, OC”, the comedy gets darker and darker along the way, and coalitions form and dissolve among the four members of this 'loving' family. Again, we would love to see a collaborative effort of perhaps SF Playhouse and SF Jewish Theatre bring this well-written play to the Bay Area. It is funny, edgy, and totally engaging.

We sought out our third winning play in Chicago not because of the venue/company's fame (as we did the two above) but because we wanted to see a new musical (“The Glorious Ones”) by two of our favorite writers/composers, Tom Flaherty and Pam Ahrens (“Ragtime”, “Once Upon this Island”, “Schoolhouse Rock”). The fact that the production was being done in a house of 26 seats by the unknown (to us, that is) BoHo (Bohemian) Theatre Ensemble almost caused us to pass this one by; but how happy we are that we did not. This tale, based on a book by the same name, is a story about a roaming, Italian busker company in the late 1500s. The story is intriguing; the music, grabbing; and the acting by this set of community players, outstanding. All seven voices in this production could fill a hall twenty times the size of this barely living-room-size venue. With piano and violin accompaniment and a simple but highly effective set, this was our biggest surprise of the entire trip. We would love to see TheatreWorks take this one on, even though there are a few scenes more bawdy than TW usually does. (SF Playhouse would also be another possibility for a Bay Area production.)

In Nashville, we were treated to the opening stop of an extensive national tour of Minneapolis' Guthrie Theatre's “Little House of the Prairie: The Musical”. Now before anyone chuckles or rolls his/her eyes, let me assure you this is a very well-written book by Rachel Sheinkin (“25th Annual Putnam County Spelling Bee”) and music by Oscar-winning Rachel Portman (Emma, Cider House Rules, Chocolat among many others). I read all nine of the Laura Ingalls Wilder books twice in elementary school and then once again to my boys as they were growing up. I and my ex watched all ten years of the television show, so I was totally primed for this production. Melissa Gilbert, who plays Laura throughout the television series, plays "Ma" here (along with two of her children in the ensemble). That is a real treat, except Melissa cannot really sing. Fortunately, she does not have to very much; and many of the songs go to the three Ingalls girls and to Laura's nemesis Nelly Olson, all of whom are portrayed by young actresses with incredible, top-notched voices (as is the very cute actor playing Laura's husband-to-be, Alonzo). The book of the musical captures very accurately the key events of the later years of the girls' growing up in South Dakota. This is a fun musical to catch as it travels across America (and skips Broadway altogether, at least at this point).

OK, there was a major disappointment. We were most excited to be going to the Broadway-producing machine, the Steppenwolf Theatre (of “August, Osage County” fame). We saw yet another world premiere, “Fake”, also written and directed by a company member, Eric Simonson. The play retells a somewhat true story about the discovery of an ancient skull in 1912 and the exploration in 1953 to determine if the original skull (considered one of the most important archaeological finds to-date at the time) was authentic or not. The play ping-pongs between the two time periods; and the audience subsequently nods to sleep as the plays talks them to death, confuses them as to which actor is which in which time period, and as the story just drags and drags when it is supposed to be, we think, an enticing mystery. Rarely have we ever heard from a sold-out audience such a tepid and short response, both at intermission and at the end. Hopefully, this play dies a natural death after this production; but I have a suspicion this is exactly the type of play that we will someday soon see at ACT in San Francisco, since that house seems to pride itself on bad picks of new plays.

In addition to the above plays and musicals, we were lucky enough to get balcony tickets to the Lyric Opera of Chicago (often considered to be the second-best opera house in America behind NY's Met) to see Verdi's “Ernani”. Certainly this production met and exceeded all our expectations from this acclaimed opera company. The massive stage was littered by several dozen chorus members, all sumptuously costumed and re-costumed a number for times during the elaborate show. The leads were all vocally outstanding as well as being great actors. The most amazing thing for us was the acoustical excellence of this massive, very long hall. The audience is much further back than in the similarly sized (seating-wise) SF Opera house, but the quality of sound (at least in the first balcony) was perhaps the best we have ever experienced here or in Europe.

We also attended, due to its decades-old reputation, the Second City Comedy Club in Chicago. While it was fun to be there, we found the evening to be only mildly entertaining. We came away feeling like this production much like the current Saturday Night Live, is only a faint shadow of its former self of the 1960/70s when Gilda Radner, John Belushi and friends reigned there.

In Nashville, we spent Saturday night at the longest-running live radio show (84 years), the Grand Ole Opry. Even for only slight country music fans, the evening was a real winner for us. The show is divided into four 30-minute segments (with lots of live commercials on stage throughout). Each segment is hosted by a Opry member (to which each person is elected for life), usually a star of past years. That person does two numbers and a few jokes, followed by two other performers who do one number each, and capped by the half-hour's marquee performer, who comes out with full ensemble for two numbers. So, in the two hours, the audience sees and hears on the massive stage 16 performers/groups along with back-up singers and a country band/orchestra in the background. We will definitely go again, even if we did have to sit in fairly uncomfortable church-like pews, a remnant of the early days in the original Opry setting.

And The Museums and Art/Architecture
In Nashville, we went to the beautiful, art-deco Frist Center for Contemporary and Modern Art, set in the former, vast, main post office of Nashville. This museum of rotating exhibits is worth a side trip to see if in the vicinity. Among other exhibits, we saw ”Georgia O'Keefe and Friends”, the third extensive set of her art we have seen in the past couple of months. We also spent 1.5 hours at the Country Music Hall of Fame and Museum, a high-tech wonder that needed much more time for real exploration. We will return there and spend a half day to learn (and hear/see on video and in listening pods) the history of country music. By the way, Nashville is totally a great place to visit for a couple of days, and the Broadway Ave. district running into the Cumberland River is full of nightclubs, restaurants, museums, and sports facilities -- many new as of the '90s and beyond.

In Chicago, we spent the good part of a day at the Art Institute of Chicago where one runs constantly into almost every (it seems) famous painting/statue from the 19th and 20th centuries that has been seen in art books, art history classes, and art posters. The new wing, dedicated largely to architecture and design, is a good reason to return for those who have already been to the Institute in the past. But our real love of Chicago blossomed in the out--of-doors throughout the downtown region. The hours and hours we spent walking the streets and the Millennium Park gawking at outdoor art (Picasso, Miro, Calder, Chagall among many others) and at the gorgeous and awe-inspiring buildings were our most fun of the trip, in many regards. The best 2 hours we spent were on The First Lady on a boat tour on the Chicago River, guided by a member of the Chicago Architecture Foundation. The lecture and stories about the scores of buildings we passed were a real highlight of the ten days.

Finally, the Nightlife
Yes, we did play, too. As always, we spent nights in Nashville at our favorite nightclub, Tribe, where gays, lesbians and their friends gather in a series of large, upscale bars and rooms for socializing and dancing. We spent a really fun Halloween night there, dressed as sailors (me in white, he in blue) and saw some of the most creative costumes I think either of us has ever seen. (Actually, this is only the second time we have gone out on Halloween in the past 7 years, so we are not the best judges of what folks are doing these days in terms of dressing up.)

In Chicago, we purposely stayed in Boystown, near Wrigley Field and within the Lakeview district, where most of the gay venues of Chicago reside (bars, dance clubs, restaurants, retail stores). Our favorite three where we frequented until the wee hours of several mornings were Sidetrack (where supposedly more vodka is sold than anywhere else in the USA), Roscoe's, and Cocktail -- all fun and very nicely appointed. The mild, even warm temperatures while we were in Chicago assured that Halstad Street (the Castro Street of Chicago) was packed on the weekend, as were all its establishments.
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