Writ on water

The only show I follow with any regularity is Six Feet Under. The general premise is that the man who owns, runs and lives in this funeral home dies, and his two sons run the funeral home while their mother and sister continue to live there. The show is about them and their lives and the people who seek their services.

The dad keeps showing up, and they speak to him and he to them. He is distinctly different with each person, so much so that he doesn’t seem like the same character. When it comes down to it, he isn’t. He is defined in each scene by his relationship with the living character. The way one son sees him and interacts with him is not the same as the other son.

I hope to feel my mother’s presence and hear her insight and comfort when she’s gone. I want that, and I think she wants it too. I have a general idea how Mom’s presence would be felt by my father, but I can’t say that about Paul. His relationship with Mom doesn’t seem to have the kind of depth I would expect, and that didn’t occur to me until a few weeks ago. I bet it’s there. I hope it’s there. Maybe I’m just blind to it.

We are defined differently by different people. When we die, we’re not ourselves anymore, and our actions and words aren’t there to describe us to others. The same is true about gossip, I guess. When I tell Brooke about someone at work, her image of that person is composed of my words. The only difference is that my coworker could one day change that image. When we speak about the dead, the story is told.

Voice mail

Mom didn’t see the doctor today when she got treated, but her blood counts are okay. I forgot to ask if they took another liver function.

Nancy used to work in the old oncologist’s office, but then there were weird political things and, long story short, she quit. When Mom’s oncologist retired from that office, Mom chose to seek treatment at a large cancer center rather than with another doctor in the same small office. Nancy is one of the chemo nurses at the cancer center now, so Mom sees her almost every time she gets treated.

People in chemo get to know their nurses and fellow patients pretty well. Mom had two close “chemo buddies” die when she was at the other office. One was 31 years old.

Nancy knows Mom well, and her daughter used to work for Mom’s transcription business. Today, she asked Mom how she was doing at home, how the business was, and how much she was still working, and she was disappointed by the answer. Mom’s still doing some typing and proofreading, and Nancy thinks she should be doing what she enjoys in the time that she feels well. This seems so obvious, but when things need to get done, we just do them. Mom and I do the things that we feel responsible for, not always what we want.

Mom wants me to get on with my life. She thinks I’m not getting on with my life and living it and doing what I want. The stoic part of me can’t tell her that not a single part of me would choose to do anything else. All of me wants this to be different, but all of me knows that it’s not. Given the circumstances, this is what I want my life to be.

It's not Auld Lang Syne

Resolutions

1. I will accept goodies and assistance when they are offered to me.
2. I will say NO when someone asks me to do something for which I do not have ample time.
3. I will say NO when someone asks me to do something I do not wish to do.
4. I will leave or send Brooke out of the house when I’m driving her up the wall.
5. I will try to engage in small group social activities at least weekly, but I won’t feel guilty if I’m not up to it.
6. I will try to exercise daily, but I won’t feel guilty if I’m not up to it.
7. I will recognize that it is better to eat junk food than nothing at all and that it is better to eat whole foods than junk, but I will eat what I can.
8. I will do the little things which make me happy, including but not limited to singing loudly in the car, playing with the cats, and eating good olives.
9. I will not weigh myself more than once a day.
10. I will return calls and emails in a timely fashion so that I maintain contact with the people who care about me.

Help me keep up with these, will you?

Seraphim and Cherubim

We watched the latter half of the second part of Angels in America last night, and for the first time, I realized why AIDS was called Gay Cancer when it first emerged. The seemingly random lesions, the steady decline in organ function, and the hissing, wheezing cough are all the same. Not all cancers end that way, of course—just the ones I’ve seen.

My grandfather, Mom’s dad, died in January of this year. I traveled to see him for the first time in several years shortly before his death. For the first time in ages, he was asking about me, so I bought my first pack of cigarettes in three years and hopped in the car. I’ve managed to quit (again) since then, but the stress and pressure and anxiety have tempted me more than once. My grandfather never answered to Grandpa, at least to me. I had to use his first name, leading in part to my impression of our relationship as cordial, informal, and impersonal. I don’t have a name for him in my mind, not Paul, not Grandpa, just my grandfather.

I was a preschooler before we ever met one another, and we lived within two hours’ drive.

The only picture of him that I have is still on the dresser at my parents’ house. It looks at me, and frankly, it creeps me out. Somehow it’s too personal and intimate to turn the frame face down. It’s creepy, not meaningful in any way. Moving it seems extreme given our distant relationship.

Mom was there when he died. She had a tumultuous relationship with him and never duked it out entirely, but she was there because he was her father and because she has the strength to be realistic without holding a grudge. We spent a lot of time on the phone those weeks she was living there. My grandmother goes to bed at 7:00 P.M. (not an exaggeration), and he was doped up on pain medication. We continued that trend when she was back home full time, and she hated to think of how cold his body would be in the mausoleum. Every time I hear her voice, I make an extra effort to store it in my memory, but I don’t know if I can.

Angels in America addressed the death and dying issues in such a raw and straightforward way. I was making nisuah, so I had an excuse to turn my back to the screen and move away and think about something else. Bread. Bread is good and life-giving. Life-giving. I struggle with the existential stuff more lately than ever before, and A in A was too much. I pray both for the courage to trust God that my life isn’t just a serendipitous chemical reaction and for the happy numbness not to care.

Paula Baker's tiny ring

She's begun giving things away.

Back in the USSR

First day in and doing okay. I didn’t expect to feel this settled, and it’s not in a resigned sort of way either. It’s matter of fact and business-like. It’s just being done. Last night (Wednesday night), I made train reservations online for the first time after buying them over the phone for several years. I also bought a cell phone and plan after scouting online all day, but that was purchased over the phone. Nice folks—Working Assets Wireless. Tell them I sent you. I went grocery shopping with a list that no one else had made (don’t tell Brooke), and I spent a hideous amount of money, none of it my own. The health food store here has all organic produce, but all of it was wilting or rotting or otherwise gross. Four dollars (!!) went toward mixed spring greens. I also cooked (again, no fair telling) a fairly substantial meal of which Dad took three helpings. I had forgotten what a big eater he is for such a small person—I may outweigh him, and that’s impressive.

They—using such a term rather loosely—recently bought a new television.

“What’s wrong with the other one?”
“It’s fine,” Mom shrugged, “Dad wants to replace the TV at the cabin.”
“Okay?”
“…And take the TV here up north.”

So I had to help my father devise a plan for heaving this “silver” and black monstrosity onto the new TV table, conveniently manufactured just for this television. It fits onto the table with less than a quarter of an inch of wiggle room, and, if lifted improperly, could have imposed a temporary caregiver role swap amongst Mom, Dad, and me. Now that it’s on the table and secured with ridges and bolts and bumpers, it actually looks kind of nice. I am never, ever lifting that thing again, and if they want it moved, they know not to call me.

I organized my stuff in the bathroom, my body tending to favor the left side of the sink, as that was my side when Paul and I lived here, and when Didi, our German exchange student, lived here with me. Now that it’s just my folks and their cats, one of the cats sleeps on a towel on the right side of the bathroom counter. That might have more to do with my favoring the left. He’s been known to bat things off the counter or into the sink during the night, so my jewelry was tucked into a drawer. I’m concerned about my toothbrush falling on the floor and being sat on, but not enough to rig a sanitary toothbrush holder in the drawer. I may feel differently about that in the morning.

Thank you notes

Someone contacted me yesterday to offer help and support while I’m doing this. She’s not someone I know particularly well, and we’ve never had much of a rapport beyond silent tolerance. I’m still trying to decide what to say in return to either of two messages, one via a mutual friend and one via my other weblog. The first startled me. It also made me cry right there at my desk in the middle of the workday.

She called this (“this” being the still unnamed semitransition/adventure/housekeeping-pre-caregiving) a wonderful and courageous thing. It blew me away to think of this as anything other than my own selfishness of needing my mommy. Grace said that it is. I told her it’s just a thing that needs to be done. She said that didn’t change matters.

The second message offered help. Help like car rides and cat food and cat-sitting. (Brooke said she doesn’t know what she’s getting into with that second one. Quid and Muggle weigh 16lbs each.) I’m touched by and grateful for the offers, but even more touched that she contacted me and made them despite our differences. She went out of her way to reach me, and I’m at a loss for what to say to her.

Part of me hopes that she will read this and recognize herself and not be angry that I’m writing about her in a public place, but that she will understand my gratitude and my inability to say anything more than “Thank you.” I don’t want to be curt, and I don’t want to write such an inarticulate message that I’ll cringe whenever thinking about it. Most of all, I don’t want her to think I’m ignoring the message, so I have to come up with something relatively soon.

Our mutual friend also offered her help and in equally tangible ways, but in ways I never would have thought to ask. I appreciate these offers more than the actual help they would provide. It tells me that I’m valued, that I’m doing the right thing and that it’s recognized as something difficult. It means that people are good, that I am good for doing this and they are good for helping me. It almost makes up for all of the times that I think people are morons.

Moving is moving

Mom’s tumor marker doubled since she started Doxil, and it’s over 1200 now. It was in the low 200s in July. They’re trying another treatment regimen, but I don’t know how many more there are. The thing about cancer is that as long as stops, it doesn’t matter if it leaves. We’re willing to negotiate with it, and may offer up deceleration as an option.

She’s so scared. She said she’s losing this fight. She said she’s not ready to leave me.

When I was 9 or 10 years old, I convinced Mom to let me get a perm at a salon. We went to Haircuts Plus, and she sat with me through the whole thing, sometimes talking to me and sometimes to the perm lady (cosmetologist?). Somehow, it came up that Perm Lady’s mom had died when she was young, and my mother told her how I had made her promise not to die before I got my period. I was mortified.

I’ve been menstruating for a while, but I’m still not ready for this. I’m moving back in with my parents part-time.

The severity of this doesn’t seem to have sunk in. It's a huge thing that I've started, and it goes beyond my obsessive planning. It's not the list of people to call and the list of people to email when she gets really sick as well as when she dies--it's changing my work schedule, buying train tickets, getting a cell phone, making arrangements for the cats, and essentially moving back in with my parents. This is moving now.

My mother's thrilled. She laughed that she hopes this isn't pressure to die. I want more time with her while she's still healthy (she gave me a hard sell on rubbing her feet when I arrive). We talked about the train ($15.30 each way for the least popular times) and the cell phone and that it won't be a fixed schedule. I have appointments and obligations here that I can't miss, and she knows that. They’re going to contribute a lot to this deal, like my train fare and part of the cell phone cost, although they don’t know about the latter yet.

Long as God can grow it

I got my hair cut. Trimmed, really, given the small amount of hair that was actually on the floor when she was done. Vicki was supposed to have done it, but Vicki was out. A friendly woman I had met the last time I was in, Grace, did it. Vicki was recently diagnosed with breast cancer, and chemo is knocking her down. Yesterday, though, part of the problem was that she had just had her port installed and couldn’t really lift her arm.

Grace snipped, and we talked about chemo. I told her about Mom, used the delicate but straightforward line that she’s not doing very well. Strangers know that “not very well” is bad. I mentioned metastases in the liver, and she stopped and stepped back from me.

“I lost my sister in April to breast cancer. She had it in her liver, too.”

I could have wept in that chair. Her sister was 34 when diagnosed. I told her I know a woman who was diagnosed at 27. We discussed mammograms and baldness. The conversation went to Mom’s CANCER SUCKS hat, and Grace told me I could quit my job and make them for a living.

Walking back to work, it struck me that we are three different women with three different relationships with breast cancer, all brought together by haircutting. I thought about crying but decided it wasn’t worth it.

A letter I'll never send

Dear Momma,

Square one: I’m really fucking scared. You don’t need to know that, since it won’t make either of us feel any better about anything. I almost wish I could tell you, just to get it off my chest, but I think you already know, and saying it will just crush us both.

Point two: Things never seem to work out as planned, do they? Aside from never, ever planning that you would get cancer (let’s face it—we both expected it would be Daddy before it would be you), I never thought I’d plan my life around your illness and decline and eventual passing. Here I am, planning. You don’t know that we wanted to have a child by now, and you don’t know that we’re going to start trying as soon as Brooke gets a job. That’s a lot of pressure for her, isn’t it? Even more pressure since you’re not doing well; I want you to meet at least one of my children. Will knowing that motivate you to get better?

Now, I don’t want you to think that I’m blaming you for this. I’m not angry with you or your body, just your doctors and the lazy assed cancer researchers sipping Mai Tais in San Antonio this week. I want her to come back from that conference with a solution, a way for you to beat these damn tumors. I hate that your liver is so big that it sticks out under your ribs. I hate that on Monday you had three quarts of fluid in your right lung and that you surely have more fluid there now. Hate it.

When I was three, I told you that I hated you. My favorite bathing suit was in the wash, and I threw a tantrum over having to wear a different one. I was prostrate on the floor screaming that it smelled like fish and I hated it and I hated you. You carefully hid a smirk and told me that you’ll always love me, even if I became a bank robber and changed my name to Anne. That made me bawl and forgive you your laundry inequities. What will I do without you to tell that story whenever you introduce me to someone?

Back to issue two: Hope is planning too, but Paul’s just pretending nothing is wrong. She’s terribly sad about you, but she’s fearful about Paul’s reaction, especially based on how he was after Brock died. Brooke doesn’t know what she’s going to do about me. It’s a fairly typical dynamic for Brooke and me, I would guess: I try to take care of you and she tries to take care of me. Hope is in the position of taking care of you and Paul and Hannah. Maybe Brooke can take care of her a little.

Item number three: Daddy. I hate to admit it, but I don’t think I can do it, Mom. I can’t take care of Daddy, but you know my conscience won’t let me not try. He’ll drink and I’ll struggle, he’ll say I’m controlling him and I’ll be in a rage, and in the end, we’ll both be worse for it. We will both be worse without you.

The last part: Lately, I’ve been finding more and more about you that is like me and more about me that is like you. At the cabin, I realized that we have the same arms and shoulders and that your legs really are just like mine. We have the same weird vein in one calf and the same spot on our backs that will always get a cavernous blackhead. Losing you is like losing my clone, or perhaps that losing you is like a clone losing the master copy. I’m not you but I’m nearly you, and a copy of a copy is never as good as the original. I mean that I won’t have anything to work from when you’re gone, that a part of me—the foundation, maybe—will degrade.

Clearly, this isn’t a letter I can send to you, and I wrote it knowing that I wouldn’t. I wrote it knowing that someone else needs to see this so that I’m not living this terror in the vacuum of my house. I’m sorry that there is so much I can’t tell you. It just wouldn’t help us. You need to know that I’ll be okay when you’re gone, and I’d rather lie about it than have to give you bad news.

Love,
me

Upswing

I've been a lot calmer lately, which I am truly grateful for. My father adores his granddaughter and the two of them make us all break out in giggles. No major migraines in almost a week.

Church has me burned out and broken down. I'm considering churching with a friend save for the dates that I need to make an official appearance. Fortunately, the bulk of my churchly obligations end in 46 days.

Eating is becoming more problematic. If only I were actually hungry when food opportunities presented themselves, I'd probably be recovering. Ten pounds? Fifteen pounds? I've lost a lot since this summer, and my littlest pants are now gapping in the back. The smaller I am, the less people seem to take me seriously. Maybe it's a stature thing. Maybe it's my self-consciousness at the ridiculousness my body has dropped on me. Baggy slacks, blouses fitting like garbage bags. Sometimes I wonder if it's the eyes--my eyes. My sunken eyes that let passersby gauge the value of my sleep and nutrition over the last weeks. Thank God I'm not looking for a job. Or sperm for that matter. I wonder how much damage I've done to my fertility.

Poor B. She's trying to compensate for my lack of appetite, my sleeplessness, and my moodiness, and then she goes and gets sick.