Sometimes Poetry Says It Best

Dirge Without Music

 By Edna St. Vincent Millay

 I am not resigned to the shutting away of loving hearts in the hard ground.
So it is, and so it will be, for so it has been, time out of mind:
Into the darkness they go, the wise and the lovely.
Crowned With lilies and with laurel they go; but I am not resigned.

Lovers and thinkers, into the earth with you.
Be one with the dull, the indiscriminate dust.
A fragment of what you felt, of what you knew,
A formula, a phrase remains,—but the best is lost.

The answers quick and keen, the honest look, the laughter, the love,—
They are gone. They are gone to feed the roses. Elegant and curled
Is the blossom. Fragrant is the blossom. I know. But I do not approve.
More precious was the light in your eyes than all the roses in the world.

Down, down, down into the darkness of the grave
Gently they go, the beautiful, the tender, the kind;
Quietly they go, the intelligent, the witty, the brave.
I know. But I do not approve. And I am not resigned.

Happy birthday, Mom. See ya on the other side.

What We Take With Us

My mother used to say that every time she saw chickens she thought of me. As an afterthought, she would add how much she hated chickens. This didn't happen once. It happened repeatedly. "Every time I see chickens, it just makes me think of you. Ug, I hate chickens!" It made me laugh every single time. One time I repeated it to her verbatim. A horrified look crossed her face as the she heard those two ideas side-by-side for the first time. "I suck. I am so sorry!" I laughed and explained that I understood. I loved my chickens. She saw chickens and thought of my love for chickens, then the thought of how much she hated chickens. A perfectly logical thought progression.

Recently, I've been thinking of my mom every time I see oleander. I loathe oleander. It's pokey and huge and poisonous. Terrible to try to eradicate. But my mom loved it because her mom loved it. It thrives in drought, a bright spot the drab brown of our Northern Californian summers. But man, I hate that stuff.

At the beginning of August, my yvil sister and I buried my mother's ashes. Y had collected a batch of little trinkets to bury with her, the dogs' name tags, little charms with all of our birthstones, a rainbow girls thing-a-ma-bobber, and a Starbucks latte, prepared just the way my mom liked. I brought nothing.

She placed the plastic box of ashes in the hole and scattered her meaningful trinkets over and around the box, and wedged the latte in there. I went to the edge of the cemetery, picked some oleander blossoms, and placed them on top of the other things. They were lovely: poisonous, pokey and lovely.

They reminded me of my mom, of my relationship with my mom. Are there two different ways of looking at something? We'd take opposite stances. Sometimes that could get a little impassioned, hating something the other person loved. But always we loved each other, even when we were so angry (or hurt) we could hardly speak to each other.

When we had only days left, did we talk oleander or chickens? No. At the beginning of the end, when her capacity for speech was really winding down, she had one thing to tell me—I love you. When she was signing Christmas cards, she could hardly write her name, but she wrote IloveyouIloveyouIloveyou all joined together. She loved me. She hated chickens, homeschooling, attachment parenting, home birth, and the Mormon church, but she loved me. In the end, that love was all that mattered.

The Truth Ain't Always Comforting

My mom died early in the morning on December 21st. Everybody wants to die peacefully in their sleep. Everyone wants to hear that someone they love died easily. I've been lying pretty steadily to my mother's friends and relatives. If you want that, stop reading now. Read my lie and stop: Yes, it was easy and peaceful. I miss her very much.



The truth is: My mother's death was the most horrific thing I have ever witnessed.  I have never seen suffering that intense (and I've been a part of 11 drug-free births). Listening to her take her last couple of breaths may well have been the most beautiful sound I've ever heard. I miss her immensely, but no one in their right mind would wish even one more second of life upon my mother.

Her pain control had never been great. On average, I'd say the last two weeks of her life were spent at an 8 on that infernal pain scale. (See here and here for irreverent explanations of the pain scale. Language warning on the second link.) The hospice team took us slowly through a gamut of meds. We started with Norco (a codeine and acetaminophen mix), moved to long-acting morphine pills, then to liquid morphine, Fentanyl patches and finally a Dilaudid IV pump. Each time Vlas, the hospice nurse, visited he would call the doctor and increase the meds. (He advocated for my mom compassionately and aggressively. God bless him.) And none of it worked until we got to the Dilaudid pump. It, combined with six Fentanyl patches, knocked her out and allowed her to rest peacefully. We had the pump for two days.

They give you a booklet that explains the signs of death. Several books actually. And the yvil sister and I read them and read them. A week prior to her death my mother was doing everything that indicated that she could die any minute. (Except the mottling of hands and feet—that woman died with pretty pink hands and feet.) The waiting was excruciating. (I am not a good wait-er under the best of circumstances.) The hardest was the death rattle that went on for days. She would stop breathing for 15-20 seconds several times an hour. I found myself holding my breath with her, hoping there would be no more. Hoping she'd die peacefully in her sleep.

At about 2 am, the death rattle changed. I could tell death was near. I prayed my sister would be able to sleep through it. Not likely. Mom began moaning, and that moan turned into a noise that was as loud as a scream, but not as shrill. After about forty minutes, Y came in.

The Dilaudid pump allowed four extra doses an hour at the press of a button. I have never been so precise before in my life. Fifteen minutes, press. Fifteen minutes, press. I slapped our last Fentanyl patch on her (for a grand total of  seven 100 µg per hour patches).

My mom had bought a book, years ago, about how to kill yourself in a dignified manner in the event of an incurable disease. She'd had me read it and asked if I would be very angry if she chose that route. She never got to that point while she was lucid. (Very disturbing, that book.) I pulled that out now. Not to kill her. (I'd already had to reassure Y that Mom would never have wanted her to go to jail for any reason, ever. Even though she'd said "kill me" days before.) I pulled the book out to figure out how much liquid morphine is lethal, so that I could give her as much as I could without actually hastening her death. I quickly determined that liquid morphine was hard to get to a lethal dosage once you've been taking it for a while and that the lethal dosage was quite high, well beyond any amount we could get into her. I began giving the dose that had been prescribed for breakthrough pain, slowly because she couldn't swallow and it had to be absorbed under her tongue. All the while: fifteen minutes, press; fifteen minutes, press; fifteen minutes, press.

Three and a half hours later, the moaning/screaming/death rattling subsided into mere moaning/death rattling. A half an hour after that it stopped altogether.

When she came to confirm death, the hospice nurse asked why we hadn't called for help. They could have increase the dosage of Dilaudid the pump was giving her. In hindsight, we'd had time, but at the time we didn't know.We thought we were minutes away. Additionally, the night hospice team sucked. And the night dispatch nurse sucked even more. (Had a couple of prior attempts at nighttime advice to confirm that one.) It would be an hour before they could get there. And the pump took more than an hour to set up originally. Additionally, we were too busy giving her the pain meds we had and holding her hand.

I felt betrayed by the hospice literature. By all the people who had had sweet peaceful deaths. By everyone who had ever touched my mother medically. I'd never heard of anything like this. I felt like my sister and I were dumped into the middle of a complicated surgery, handed a bunch of scalpels and sutures and told to figure it out. I still am in shock. It's been two weeks and I am still in shock. My mother-in-law hadn't died like that. My aunt hadn't. My uncle hadn't. They all died of similar diseases. If I had some sort of way to forget, I'd take it. But I don't. I get to be sucked back into the memory at random moments. To dream about it.

Finally, I just decided to write it. To get it the heck out of my head.  To save innocent bystanders who are politely wondering how I am doing. (The answer to that is just fine, most of the time.) To provide a cautionary tale to others. (Ponder long and hard about dying away from medical personnel. Weigh the risks of heinous medical interventions against the risks of dying with a sudden increase in the need for pain meds with all help at least an hour away.)

Don't worry about me. I have an amazing group of friends who have been there for me this whole journey. I will heal. I don't know how many times I will have to tell this story before it loses it's power, but I know that it will. Eventually it will become a memory, instead of a reality. Thank you to those of you who made it this far—thank you for holding my virtual hand while I've told my story.

The Latest CaringBridge Post

I'm not entirely sure how this next while is going to go, but I think the end is very near. I'm just re-posting the post I wrote for my mom's friends at CaringBridge. Not sure if I'm going to feel like posting like crazy or if my words will be trapped in my head. At least you'll know why.

Hospice 

Last month, Mom decided to discontinue chemotherapy and has opted to receive hospice care. Our first meeting took place two weeks ago. Since then we've had a wonderful nurse, Vlas, who has been visiting mom at home and taking care of all of her comfort needs.  

We're not sure how much longer we'll have with mom. For the last couple of days, she's not been eating or drinking much, which is a difficult transition for all of us. Vlas--and a bunch of other sources--have assured us that the curbing of her thirst and appetite are perfectly normal end of life developments. She's sleeping a lot too, which is also to be expected. 

Pain control has been an issue. They've adjusted the medications several times and seem to be coming to a reasonable level of control. As you pray for us, please pray that she can be comfortable for her remaining time, whether that time is measured in weeks or months. We have felt the power of your prayers many times in this journey, and I know the Lord will answer our earnest prayers. 

Thank you so much for all of your love, support and prayers. 

Jami

When Delusions Collide

Saturday, my mom started hospice, the in-home kind. So yeah, we're getting there. The chemotherapy is not helping and is, in fact, sapping all joy and comfort out of her remaining days, so she stopped. The doctor said that of course we don't know precisely how much longer she's got, but given her symptoms (weight loss, appetite loss, difficulty breathing, blood clots, recurrent infections, routine dehydration, weakness) and the x-ray confirmation that tumors are getting more profuse and bigger, not smaller, we are looking at a couple months.

The first hospice meeting was an enrollment meeting with some kind of administrator/nurse, Linda, a nice lady. She explained the program to us. Explained the stringent requirements. (Did you know you can get kicked out of hospice if you plateau too long? [I wish!] Must be journeying toward death to qualify.) She answered our diverse questions, and exhibited incredible patience.

My mom asked a few reasonable questions and did a whole lot of listening. My aunt sat in one corner, saying things like "She's getting better, not worse; she doesn't need this." My sister sat in another corner, shaking and weeping softly. My mom's friend gave a spirited account of her volunteer service in Hurricane Katrina. My 18-year-old, Elaine, who's the one actually living with her, said nothing. We all recoiled in horror when we realized they wouldn't give her IV fluids at home (which she does twice a week), that at some point she'd be too weak to go and they still wouldn't do it.

Honestly, it's all a bit of a surreal blur. Elaine says I behaved well. (Good to know as there was a great deal of "OH, FOR HEAVEN'S SAKE, PULL IT TOGETHER, YOU WEIRDOS!" going on in my head.) Honestly, I can't remember much except my family's bizarre behavior and going through all mom's meds with Linda, the RN.

Some real perks to hospice: We no longer pay for OTC or co-pays on prescriptions. One call gets us medical advice day or night. One nurse contacts all of the doctors for my mom. Some of this uncontrolled pain will be eased. Someone else is going to change her sheets twice a week. (My shoulder sort of hates me.) A social worker will help our family work through some of the issues surrounding mom's illness and death.

And boy, are there some issues. One of the drawbacks of moving to hospice care is that it's really bringing out our different points of view. Very uncomfortable.

My aunt believes that the doctors don't know what they are talking about and my mom is not going to die from this and if we would all just send our positive thoughts into the universe she would be recovering from all these nasty complications from the meds much faster.

My sister believes that she will not survive my mother's death and there will never be happiness again. Ever. About anything.

I believe that as the chemo works it's way out of my mom's system, she will feel better for a while. Then the cancer will attempt a take-over and my mom will ultimately die. (At which point, the cancer loses forever. This thought is grimly satisfying. Cancer never wins. Never.) Then my mom's spirit will join her family and friends who have gone before her in the spirit world and she will await the resurrection. Then she gets a perfect pain-free body, as does everyone else she loves. I like my worldview best.

Still the suffering right now is hard. I spend a lot of time pondering the purpose of all this. Started reading The Book Thief, which by all accounts is fabulous, and had to set it aside. Anything narrated by Death is going to have to wait. For a long while, I'm guessing.

I've decided that it's OK that my husband under-reacts to emotional trauma. (see http://www.supermisc.blogspot.com/2010/11/his-and-hers.html) He's calm. He and God are kinda holding the world together for me.

Sad News

My mother-in-law died on Thursday after courageously going through nearly four years of chemo. (Not a whiner, my mother-in-law.) I'm surprised at how sad I feel. We weren't close. If she lived another twenty years, we wouldn't have become close, but she is the mother of the dearest man in the world and the grandmother to my favorite six kids. Her death is a reminder that my mother's is coming. That mine is coming.

OK, now I'm going to go watch a comedy and laugh until I cry.

Longer than a facebook update, but not much.

I know most people who visit my blog are here to look at lice-ish pictures, but for the few who come because they know and love me, here's a quickie update. In January, my mom came super-close to death. The second chemo treatment left her gasping and pretty much unable to get out of bed. Freaked me out. So she stopped chemo for a while and then started up a different type. Same meds, but by pill instead of IV pump. And it's going much better. Looks like she'll be able to complete this set. She just finished up her third two-week round. I think they're doing another nine. She's tired, but not nigh unto death. She's back to talking about her 10-year plan. I think the 10-year plan would be miraculous, but I'm glad to hear about it again. So now the borrowed computer is telling me I have 7 minutes, so farewell for now. I miss blogging. Maybe I'll start again. Though I must say facebook is making me lazy. Like. Click. No thinking required. Anyhow, chao.

Made a Video For My Mom

It's three minutes of symbolic fun! OK, it's just symbolic. Not fun. But it made me cry to make it and it made my mommy cry to watch it. The good kind of tears. She wanted her friends to be able to see it so here it is. Cut to the chase if you like by going to about 2 minutes 10 seconds.

His and Hers

My husband and I don't actually have a lot in common, but the things we do are pretty big. For instance, my mother-in-law also has stage IV cancer. She was given a year to live a few years back. So he's has been dealing with this for a while. And I haven't understood him at all. I tried to restrain myself from nagging. (Don't you want to go spend time with your mom? Maybe you should send flowers? Do you want to send a card?) Because my husband's response has been that since she's not feeling well, she'd like a little peace and quiet, and he's going to give it to her.

My mom's been in the hospital all week, and I've gone as often as I could to be with her, to just sit there and watch her breathe, to get her a cup of peppermint tea, to do nothing at all. I've been keeping my mom's friends posted on her progress. And he doesn't get it. He thinks I'm being borderline cruel. Discussing her stuff. Staring at her while she's less than composed.

I'm sure there are times my MIL wishes he would step up the sympathy and attention and mine wishes I'd back off a bit. For the most part though, my mother-in-law appreciates his brand of support and my mom appreciates mine.

Makes me wonder: nature or nurture? I'd totally say it's a family culture thing, but my kids have been thoroughly trained in over-the-top sympathy responses and still I've got two who are give-em-their-space types. Maybe it's a gender thing. Maybe it doesn't matter. Too tired to tease out the tangles in this one.

It Sucks

Posting lots and lots over at my mom's caring bridge blog. Little details about her recovery from surgery. Everyone always wants more. They think they do anyway. They don't. I know I don't want to be as sure as I am that I'm going to lose her. Suspense sucks, but certainty is its own brand of hell.

I ran into a post somewhere from a guy who regarded his stage 4 cancer as a chronic disease and had vastly beat the odds. I've grasped onto that story. And I chant it to myself as I'm going to sleep and the surgeon's voice is replaying in my head, telling what he had found and where. A chronic disease. A chronic disease. Sometimes I even forget for a bit. Then I wonder why I feel so sad. Then I remember. And it sucks.

Regret

It's been a year. Almost to the day. My mother and I share a tumultuous history, but this was the tumultuous-est, an argument that was all the more vicious because everything that was said was true.

During the nastiness my mother posted a vague something on facebook that hurt and angered me. I clicked the "remove from friends" button then gloried in my newfound freedom. I could say whatever I thought without having to worry that my mom was going to be offended or nag me endlessly about something I had posted.

Healing has been slow. We've moved on. Kinda. I wouldn't re-friend her though. Even though she had asked nicely several times. Because I was right. I was right in what said. It needed to be said. And I would say it again. And she was wrong. Wrong in her original behavior and wrong in her response. Wrong. Wrong. Wrong.

Besides I liked my freedom of speech. No mom on facebook.

Last Monday, she had a CT that showed a large mass in her colon. Thursday, a colonoscopy showed it to be cancer. Tuesday, I sat with her as the surgeon told her that there was very likely a second tumor in a different place. They wouldn't know until they got in there, but he was fairly sure. Stage IV. The fatal stage.

And you know what? I friended my mother on facebook last Friday. Because I was wrong. Wrong in my original behavior and wrong in my response. And I'm lucky. Because I got a little notice.