Monday, December 29, 2008

Happy New Year

Just a short post today to let you know that Jed, Nate, and I met up last night in El Paso and are headed to Marfa and on to Big Bend for the rest of this week. The trip has been amazingly easy for me--the hardest part was getting a hundred yards or so from the Van Galder bus outside Union Station in Chicago, through piles of rutted snow, into the station itself. But from there--duck soup! Red caps helped me onto an elevator, down to the very civilized lounge for sleeping car passengers, and then several hours later, onto a little cart which took me and my luggage right to my sleeping car.

Two days later, a red cap/cart took me, relaxed and happy, into LA's Union Station, where my college friend Claire met me. Claire and I, joined by our friend Deborah, spent two fine days mostly sitting around talking--joined by Jed and Nazgol for dinner on Friday as they were driving back to LA from northern California. And on Saturday, Debbie dropped me off at their apartment on her way home to San Diego. We spent the afternoon doing errands, including getting a smashing pair of red jeans--my Chankah gift from Nazgol--shortened. And we watched the sun set over the Pacific--lovely!

And yesterday at about 5:30 AM, Jed and I left for El Paso. He did most of the driving, an amazing feat, though I did take the wheel for an hour or so through Phoenix--the first driving I've done since early December. Glad to see it's a skill you don't lose! Got here in plenty of time to meet Nate's plane--he'd flown from Morocco to Madrid to Chicago to El Paso, with no problems.

So, off we go on our adventure!

Next Monday I will be traveling all day and have no access to the internet, so my next post will likely be on Tuesday, January 6. Have a great week and a happy new year!

Monday, December 22, 2008


Last week, I got three wonderful gifts of a medical sort. First, the follow-up X-ray of my lungs was much improved after the pleurodesis, and the doctors agreed I was not crazy to get on the train tomorrow and head west. Second, they suggested that one of the reasons I was so tired was that I was marginally anemic, or maybe just plain anemic, and marginally in need of more red blood cells. So Friday I had a transfusion, and it has made me more peppy, though certainly not hugely energetic. And third, I learned, also on Friday, that I am still being considered for the Phase 2 study at the University of Chicago. I am to be there on Thursday morning, January 8, to sign the consent form and begin the further screening process. This means leaving Madison on Jan 7, less than two days after I get home from my trip to Clifornia and Texas--I just hope by then the weather has moderated a bit.

Obviously, this is all good news, and the sorts of gifts I can never repay. But it does occur to me that all you healthy people out there can help by going to your nearest blood bank and making a donation. I used to do this regularly as a young adult, and really, it's one of the most rewarding things I've ever done. They treat you like a very special person (which you are), and you know that you're making a really valuable contribution to someone's health.

Now I am in the very strange position of heading out of Madison to see friends and family over the holidays (and my sister Paula's birthday) and not taking a single gift with me. Not even a house gift of Wisconsin cheese or chocolate. I have barely been out of the house since the beginning of the month, and then chiefly on trips back and forth to the hospital and clinics. I haven't driven in weeks. And internet shopping seems particularly heartless to me. I've alerted my family to expecct their Chanukah gifts by Groundhog's Day. Still, it feels weird.

But I have seized on a conversation I had recently with my neighbor Bridget, a self-confessed "ambivalent Catholic," who was describing the priest's message at mass a week or two ago--about how this season is about presence, not presents. It does seem egotistical, if not egomanaical, to suggest that my friends and family shoulde be satisfied with my presence. But I know, from my experience the last couple of weeks, that people's presence is really what it's all about. I have been helped by so many people, in so many ways--from the doctors who made sure I got to my book party, to the hosts of the book party, to friends who brought food and comfort, did laundry, shoveled snow, drove me to the clinic and hospital and also on a little round of errands, helped me prepare for and totally cleaned up after last night's mini-solstice party... these people's help and their simple presence in my life has literally made it possible for me to function and progress beyond "invalid" status. These are the true gifts this season.

As the light grows stronger and the days longer, my wish for all of you is that people are present in your lives, as they have been for me. In the last chapter of Facing Fear, I write about the importance of community. But the chapter is really about the importance of other communities, in other places. I wish I had known, when I was writing that chapter, how much I would come to value my own community, my friends and neighbors. I would have included you all in the book.

Thank you. May you have holidays full of the presence of good friends and family.

Monday, December 15, 2008

Lungs and Friends

Well, friends come first, and I will write about them, but I know a lot of you are waiting for an update on my lungs and hospital stay--so I'll fill you in briefly.

I was in the hospital until Wednesday night. This was a shorter stay than I'd expected, because on Monday, when the surgeons poked around in my chest, they discovered a tumor blocking the bronchus in the right lung. This meant they did not want to (could not?) do pleurodesis to that lung, but instead decided to do something else, like ablate the tumor with a laser, after New Year. I have to say, knowing the difficulty of recovering from pleurodesis to one lung, that I can't imagine what recovering from two such procedures would be like.

For two days after I got home, I could barely get out of bed. My big adventure on Friday was to walk (once) from my bedroom to the den and the study and back to the bedroom. Anyone who's been on my second floor knows that amounts to maybe a hundred feet. And just motivating myself to do something as simple as put on a clean pair of underpants already set out on my bed took about an hour.

I think, looking back, that some of this had to do with lingering effects of anesthetic, but some also had to do with energy. Finally on Saturday I was able to take a bath and go downstairs. (Down wasn't the problem; the question was could I get back up.) I just stayed down for an hour or so, but yesterday (Sunday) I spent pretty much the entire day downstairs, entertaining a succession of friends who'd come with food, or to shovel snow, or to bring an article about Big Bend, or to do laundry, or to chat. I went upstairs five or six times during the day, and by the last few trips, could go up without stopping to rest. So I'm definitely getting stronger, but very slowly.

Tomorrow's goal is to actually leave the house. I'm still hoping to be getting on a train to LA on the 23rd, but I'm not going to make the final decision until Thursday afternoon, when I have an "after hospitalization" follow-up appointment with the oncologist.

Now, about my remarkable community of friends and neighbors. Obviously, without help, I would have been stuck in bed with no food for 48 hours. Although I'd left the back door unlocked so people could come in even if I was upstairs, the long driveway was snowy and slushy, hard to navigate. I had a lot of dirty clothes--the washer is in the basement, and since my dryer is broken, wet clothes have to be hung on lines. (It's so dry here in the winter that even heavy towels dry overnight.) You get the idea.

Well, the list of people who just figured out what needed to be done, and jumped in to do it, is very long: led by Janet, my next door neighbor Bridget, and Diane, but including many more--Liz, Dave and Kim K, David T, Tracy, Dennis, Robin and Will, Catherine, Jesse Lee, Sandy. And I'm terribly afraid I'm leaving someone (or more than one) out. The farther back I try to remember, the harder it is--effects of anesthesia, I think.

What I can't forget, fortunately, is the truly spectacular book party last Sunday. It was such a warm and wonderful gathering of friends and fans, including several people who were instrumental (whether or not they knew it) to the writing of Facing Fear. Friends had followed my sister Susie's request to bring an amaryllis on her behalf, and they found what has to be the tallest and most flower-full plant in the city of Madison. It's still blooming in my bedroom, after keeping me company at the hospital for half a week.

The memory of the party warmed me through the week, and will continue to buoy my spirits forever. And so will my gratitude to the wonderful people who are helping me get through this difficult time. Thanks so much to everyone!

Monday, December 8, 2008

Hospital Days

Yes, you read that right. I have been comfortably ensconsed in my single room at UW Hospital (views of the Capitol and Lake Mendota, wi-fi, room service meals) since Thursday evening, and I will be here through most of the next week. When I got back from Thanksgiving, I decided that I'd better find out why I was so exhausted and whether the MDs could make it easier for me to breathe. Things had been slowly getting worse--I really should have seen a doc before Thanksgiving, but I didn't want to screw up my trip east, so I just ignored what was going on. But Wednesday, after shopping for chicken soup ingredients and getting my flu shot, I came home to make the soup and had to sit down at the dining room table to cut up the veggies. And then later I had to call the neighbors to ask if they'd wheel the trash cart out to the curb. So I decided I should call the clinic Thursday AM.

The nurse, after consulting briefly with my primary care doc, said I should go directly to the ER. I was kind of surprised--I mean, don't we hear all the time that we should not go to the ER? Well, when I got there (dropped off by my friend Robin), I discovered that I had uttered the magic words: "I'm having trouble breathing." They had me in a wheelchair and whisked into an examining room and hooked up to oxygen within what seemed like seconds, and two teams of docs, first the medical service and then the oncologists, appeared minutes later. Then there was a nebulizer treatment and an x-ray, and then the conclusion that I had a pleural effusion in my left lung--fluid (caused by the tumors) built up in the pleural cavity, which is the space between the lung itself and the membrane that connects the lung to the chest wall. (I am learning so much anatomy! It's really fascinating.)

So the fluid had to be drained, and because they were also concerned about a blood clot that might have formed in the lung, I needed a CT scan. Somewhere in there I asked if I was going to be admitted to the hospital and they said yes. I explained that was all very well, but I needed to be out by Sunday evening because my friends Frank and Dolores Emspak and Janet Zimmerman were hosting a book party for Facing Fear. The on-call oncologists (a resident, a fellow, and the attending) who had been consulting with Dr. Holen, knew about the book and could not have been more helpful and accommodating. They drained 1.2 liters of fluid Thursday evening (which immediately eased my breathing) and also arranged for me to have the CT scan that evening. (Fortunately, there was no blood clot. I still haven't heard anything from U of Chicago about a phase 2 study, and at this point I'm not optimisic, but a blood clot in the lung would have definitely put the kibosh on it.)

Then they started figuring out how to proceed with the next steps, while still getting me to the book party. There are apparently three options for pleural effusions: repeated draining (not an especially painful procedure, but has to be done frequently because the fluid builds up rapidly); a permanent drain; or a surgical procedure called pleurodesis. This last is preferred for people expected to live longer than three months, according to a website I was checking for the spelling of the name. Pleurodesis is very strange, I think. The surgeon totally drains the fluid (even after they took 1.2 liters out, there was still more--it's too dangerous to take it all out at once). Then they blow (?) sterile talc and/or maybe antibiotics into the cavity, causing inflammation and scarring. Apparently if there's no space for the fluid to go, the tumor cells just don't produce any! I'd love to know who figured that out, and how they did it.

The thoracic surgeon prefers to do this procedure in an operating room, although I guess that's not essential. I told him (well, them--fellow and attending) that my goal was to go to LA on Dec 25, so they decided to try to find an OR on Monday morning. And they did! Working with the oncologists and my desire to go to the book party, everyone agreed that I could be in the hospital until Sunday morning, have a day pass, and then come back Sunday evening to be ready to go this morning. (Full disclosure: I'm actually writing this on Saturday evening, to be "published" on Monday. I suspect that the painkillers and anesthesia I'll be subject to would not generate a very coherent post.)

Today they will also put a drain in my right lung cavity, which has less fluid, but still some, and on Wednesday, they will blow talc into that cavity through the tube, which they will then remove. I think I will be in the hospital until some time Friday.

I asked the surgeon if I could fly on the 25th, and was actually delighted when he hesitated a little, giving me an excuse and permission to take Amtrak from Chicago and spring for a roommette! I actually love trains, and I will get to LA (if the train's on time) 12 hours earlier than I would have by plane--I think this is grand! After I spend a couple of days with my friend Claire, Jed and I will drive to El Paso to meet Nate, and we will have our Texas adventure--their gift for my (last September) birthday.

I know it sounds odd, but I think things couldn't be much better. I have had to give up the idea of the traditional big solstice party, since there are only ten days or so between getting out of the hospital and leaving for LA. But I'm still going to make latkes (fresh, not frozen) on the 21st, which is the first night of Chanukah as well as the solstice for the many friends and neighbors who've helped turn the past week, which could have been so dark, into a splendid display of light--running errands, visiting me, shoveling, and even doing my laundry! Not just odd--even sappy, because who could ask for anything more?

Monday, December 1, 2008

Thanksgiving Report

Well, it's still Monday--and I did warn you that I might not gt to this post until evening. I got home about noon today, after a wonderful Thanksgiving weekend at my sister's in DC. Jed, Nazgol, and Nate were also there; Meghan stayed behind in Bogota to show the Colombians how to cook turkey. (Not really! I think she found it a little daunting to figure out how to visit her mom's and dad's families as well as Nate's in one four or five day trip to the US. Not to mention expensive.)

On Thursday, the six of us (Susie and Bob, Jed, Nazgol, Nate, and I) were joined for dinner by my aunt, who took the train from Philadelphia for the day, and five good friends of Bob's and Susie's, who have been at many other Thanksgivings. Nate was the youngest in our party, but the age range extended upward from 30, past my aunt, who is 83, to Dinah, 98, the mother of Bob's best friend Hank, whom he's known since grade school. A very lively crew, and everyone with every marble intact.

The highlight of the day, however, was Jed and Nazgol's announcement of their engagement! They will be married in LA on Labor Day I definitely have a new goal!

Friday, Susie introduced us to SpaWorld, a Korean mega-spa in suburban Virginia. (Actually, Jed had been there for a bachelor party some months ago, and raved about it.) I was a bit apprehensive about this, thinking the humidity might make breathing pretty difficult for me. But the humidity didn't bother me, and anyway, SpaWorld offers a lot more than humidity and hot baths. There's the "poultice room," a huge area with mats on heated tile floors where people hang out and eat Korean food and make little forays into the surrounding saunas, each with a different feature. The only one I tried--not being a big sauna fan, ever--was one with a thick layer of marble-sized clay balls to dig into or lie on. Fun! We stayed at SpaWorld for something like six hours, and I don't remember ever being more relaxed. And on the way home, we stopped at Nazgol's uncle's house and had take-out Iranian food with him, his wife, and their two very smart sons who were about to celebrate their 7th and 9th birthdays.

Nazgol stayed at her uncle's for the rest of the weekend; the rest of us returned to Susie's and on Saturday we tried to see "Milk" as our traditional Thanksgiving weekend movie, but it was sold out. Instead, we opted for "Slumdog Millionaire." I'd read a bad review of it, and resisted going, but I really enjoyed it, and I think the others did, too.

Other weekend activities for me were pretty much confined to sitting on the couch or in the dining room reading, and seeing my old friend and housemate Julie who lives near Susie and came over for tea yesterday. I skipped the traditional Rock Creek Park walk--not enough stamina or breath.

Now that I'm home, I'm turning my attention to getting ready for my annual solstice party, which I will again host with the help of my good friends Janet and Diane. They are coming over on Thursday to help address invitations, so today's task involved getting the address list together and getting the invitation ready to duplicate--which helps explain why it took a while to get to this post.

Still haven't heard from Chicago, but I imagine I will before I write another post. Stay tuned.