Tuesday, June 29, 2004

I'm sitting at a window overlooking the old Brooklyn area of Oakland. It isn't a glamorous view, although if you squint you can see the mountains on the other side of the SF bay. I am fond of the jumble of eclectic architecture , interesting color choices, and the Parkway Theater sign.

I may live in L.A. most of the time, but Oakland is home. I cooked breakfast for one of my sons this morning before he had to go to class, and one of the main projects for the next month is to make this little condo into more of a home, and less of a storage bin. Mostly that involves throwing out boxes of stuff that I have not needed in two years (if I'd needed it, I'd have unpacked it.)

I am scheduled for a weekend at Etz Chaim in Merced, CA, and for a lifecycle event this month, and I have a bunch of studying to do. It's going to be a busy, quiet month.

There are so many movies out that I want to see: Control Room, Fahrenheit 9/11, Saved!, Spiderman 2, and some others I don't recall right now. Some things I am just as happy to see on video, but others I want to see on the big screen.

I want to see Fahrenheit 9/11 at the Grand Lake Theater in Oakland. Allen Michaan, the owner of the theater, is an opinionated East Bay guy who likes to use the theater marquee as a medium for ranting about the misbehavior of the Bush Administration. I cannot think of anywhere in the world I'd rather see that movie. It's a grand old moviehouse, too, and one with lots of good memories for me: I've been going to movies there since 1986.

Lots to do. I'm going to do an hour of grammar, and then clean out the bedroom!

Saturday, June 26, 2004


Shavua tov! [Good week!]

I wrote that the final day of the Interseminary Institute was to be a surprise. It was, in fact, several surprises.

The most striking experience of the day, for me, was an exercise in the ICU [Intensive Care Unit]. We were divided into two teams, each with its own scenario to role play. Our team was directed to choose a person to be the "patient," and then designate the other team members as family members. I volunteered to be the patient, so I took off my shoes and climbed into the ICU bed. Those places do not look the same when one is horizontal, I discovered. Then the "doctor" (actually an ICU nurse) came in to inform me and my "family" that I had had a bone marrow transplant after a long struggle with cancer, that it had gone well but that now I had had so much trouble breathing that they'd brought me over from the BMU [Bone Marrow Unit] to ICU. I was going to be put on a ventilator, and the staff needed to know if I and my family had discussed how far I wanted the hospital to go in prolonging my life, should my condition deteriorate. I would not be able to talk, once the tube was in my throat, so this was my last chance to give them directions about my care, and possibly (if all did not go well) my last chance to speak with them. Oh, and since I am already struggling to breathe, it is difficult for me to say more than a few words at a time.

Oy, gevalt.

I was myself, a 49 year old woman. My "mother," my "son," and my "husband" were with me. All of them were desperate for me not to die. I was sick and tired from months and months of increasingly aggressive cancer treatment, fatigue and nausea and mouth sores and goodness knows what else. My "mother" was very vocal, very talkative, not wanting to hear anything about me dying. The student playing her laid a very genuine feeling guilt trip on me about how I should not give up, that I couldn't die before her. She kept interrupting everyone in her desperation. My "son" (who looked remarkably like my real-life son, Jamie) didn't want me to die, either. He looked miserable. My poor "husband" couldn't get a word in edgewise. I couldn't say more than three words in a breath, and felt overwhelmed and guilty and scared (just how real was this going to be?) All of them were insisting, of course, we'll try EVERYTHING, and I (having spent the past two weeks getting a much clearer idea how miserable "everything" might be) was pretty sure that if a week on the ventilator didn't help, I didn't want more. But it was hard to tell them, and hard to convince them, and the whole thing was quite awful, even though it was only make believe.


There are legal documents, "advance directives," "Living wills," etc., for making our wants known in a legal way, but it is very important to TALK with family and friends and to share our feelings about extreme medical care. I don't want to spend my last conversation with my sons trying to communicate (or worse, trying to decide) how I feel about medical care at the end of life. I want to spend that last conversation telling them that I love them, if I am so fortunate as to have that chance. Even more, I do not want them to have the agony of deciding such things without my guidance: many families have to make decisions that leave them with years of guilt and pain, whether they elected to go ahead with increasingly aggressive measures (that only prolonged suffering) or elected to forgo those measures (and then wondered forever "if she might have lived.")

If you have an advance directive for medical care, be sure you talk to your loved ones about it. If you don't, put your wishes in writing and talk to your loved ones about it. It isn't pleasant, but you will come away with more of an appreciation for the life you've got, and if tragedy strikes, you will have given them a priceless gift.

Thursday, June 24, 2004

Today we had graduation from the Interseminary Institute (I got the name wrong in the last post) at City of Hope hospital in Duarte, CA. We're going back tomorrow for something special they won't tell us about, but the learning portion is done. Also, tomorrow, we have time to go visit patients one last time; I have to say "thank you" to a couple who have taught me a great deal about life in the bone marrow transplant unit, and even more about love.

I learned a lot of things this past two weeks. I learned that nearly every cancer patient is not a single individual but lives in an "ecology" of friends and family that also live with cancer, albeit not in their own bodies. I learned that bone marrow transplants are a last-ditch solution that sometimes actually cures. If you are interested in learning how you can give someone a new lease on life, check out the National Marrow Donor Program. And don't let old news stories you've read about marrow donation scare you; these days, all it takes to put you in the registry is a blood sample, and if you are a match with someone who needs a donation, it's done in much the same way as a blood transfusion. No surgery, very little inconvenience, even.

The rabbis tell us that when you save a life, you save a whole world. This is a big mitzvah that costs you nothing and is easy to do! (So click the link, already, and find out how you can be a part of this mitzvah!)

I learned how to be helpful to sick people and their families, and I'm looking forward to learning more, and teaching it, too.

For me, this program was a big scary risk. Like a lot of people, I have lost many family members and good friends to cancer. I have friends who are cancer survivors, and I know that some of them went through a very dark place in order to survive. I was scared silly of cancer, and the main reason I signed up for the program was that it frightened the daylights out of me to even think about two weeks at City of Hope.

I'm more comfortable with my discomfort, now. I'm not over being scared of cancer: one time this week I realized, as I was holding the hand of a woman who was drifting in and out of sleep, but who wanted me to stay with her and pray for a while, that drops of sweat were running down my face and my back, and splashing to the floor. I learned, though, that it is enormously satisfying to face my fears and be with people who are fighting for their lives. I learned so much from them, and from the people who take care of them, and my life is never going to be quite the same.

After graduation, our carpool ("the three little rabbis," one of our mentors called us)went to donate blood and be registered in the bone marrow registry. I left a pint at City of Hope today, along with a piece of my heart.

Wednesday, June 16, 2004

I just finished Day Three of the Interfaith Seminarians' program at City of Hope hospital. It's a huge, miraculous, holy place: not only do they do bone marrow transplants, stem cell procedures, and other medical miracles, but they take exquisite care of patients. City of Hope is surrounded by gardens. The hospital food does not look or smell like hospital food. Every effort is made to support the dignity and healing of patients and their families. In that effort, I just finished three days of orientation for a two week chaplaincy program! They are serious about crossing every "t" and dotting every "i."

I was scared silly of the place, which is why I signed up for the program. Cancer has ended the lives of so many of my family and friends that I can't bear to count them. It brings up the spectre of my own mortality like nothing else. I knew I had to come to terms with my feelings about it -- at least become more comfortable with my discomfort -- if I wanted to be a decent rabbi someday.

The second aspect of the program, also exciting, is that we are an interfaith group. Friday a Roman Catholic colleague and I will lead a morning prayer service we are writing together. One of my supervisors is a Reform rabbi; the other is an American Baptist minister. It's a wonderful group for learning and discovering one another.

I'm learning things hand-over-fist, about myself and about the world of City of Hope. It's a place of life and sickness, learning and pain, sometimes a place of death and sometimes a place of rebirth.

Shalom, all.

Friday, June 04, 2004

Remember the chorus "They took Paradise and put up a parking lot"?

It's been a couple of years since I saw the county I grew up in, and I am sorry to say it's not there anymore. Franklin, TN cocooned itself in historical status, so most of old-time Franklin is still there (in a very manicured, cultured and cultivated sort of way) but what used to be Brentwood is a horror show of malls, chain stores, condos, and all-round yucky stuff. Don't get me wrong -- I understand that people have to live somewhere, and that all those places are jobs for someone -- but did it have to all be plastic and pre-fab and UGLY?

I can see a Red Lobster sign -- or for that matter, Red Lobster food -- anywhere in America. Did we really need another one in what used to be beautiful farmland? The place where the Huff Bros used to make the best country hams in the world isn't there anymore. You can't get good country ham (not that I eat it anymore, but that isn't the point) but you can get fast food galore.

As I told my son on the phone, it's sad when that beautiful green country has turned itself into Concord, CA. Or Anywhere Else, USA.

One of the things I love about Oakland and my new adopted home, LA: they have kept some of the weird old stuff that make a place distinctive. It doesn't all have to be plastic or prefab. (I know, so strange to say that about LA. But it's true, at least about the buildings. Let's leave the nose jobs and tummy-tucks out of this.)

Hmmm. This is hardly "gleaned objects" from my studies, so maybe it's off topic. Or maybe not. I would not want to be too quick to pick up every shiny new idea or practice. Some of the shabby, old, annoying stuff is what makes a place where it is. I am an unabashedly Reform Jew. But I am glad that we're past the "Classic Reform" phase in which we had "ministers" not rabbis, Sunday "Sabbaths" and other monstrosities. Red Lobster signs and other traife can stay out of my home county.