warped

We've finally moved from treatment to hospice. It's had a much greater emotional impact on me than I thought it might. Life has pummeled us this last year, yet only now does it feel real. Incredibly real, perhaps because of the unique experience of watching your mother die. In fact it sort of crashes through the walls, the real coming out the other side, almost surreal; a mobius strip or the impossible triangle...so simple and so complex.

What has been hurting the most lately is that I can't remember what she was like. She's still alive, and I can't even remember. She's changed so drastically, and I've such a bad memory. I try to imagine how she used to talk and behave. I can't. I don't think I even have any videos. I'm not sure if it matters. My rational mind is freaking out, wondering why I can't get a grip. "Death is," it says. It happens to everyone, it happens all the time, it happens violently and quietly, it has happened for billions of years, and might continue for billions, so why, my rational mind wonders, have we not evolved to grasp that fact, to hold onto it, to understand the ubiquity of death? Such is life that it ends...it's so simple, so why does it feel so shocking?



Image: M.C. Escher's "Convex and Concave," 1955.

well, shit.

Literally. Now comes the long-awaited journey of incontinence. It was bound to happen sooner or later, though I had hoped we would have hospice or some home health help before that point.

I haven't written here in a little while--things have been busy.

Mom is increasingly weak and constantly fatigued. She spends all day in bed--and I mean all day. Last night was her last dose of chemo this round and I'm hoping that we can get hospice in now as they can't be called in if the patient is still on any aggressive curative treatment [added to the Practical Tips post here!]. She is understandably on the fence about hospice. In her mind it is synonymous with death, as it is for most Americans. What I've learned, though, is that every single person who writes or talks about hospice says the same thing: "I wish we'd done it sooner." Hospice is a part of the journey, not it's end! There is still life after stopping treatment, and the patient might even feel better without so many drugs in the system. No chemo brain!

Throughout this whole thing I've kept strange hours; sleeping in late because she does, staying up late because the wee hours are the most peaceful here. Now I'm followed by the constant hum of a baby monitor. Hum isn't the right word, though. The default static that comes through is low and constant, a little scratchy, like holding a conch shell to your ear. There should be a word for just that sound. Because of her weakness, and her weak voice (did you know that is a side effect of Avastin?), I picked up a baby monitor set at Habitat for Humanity ($5!). I leave it on my nightstand at night to charge, and take it around the house with me during the day. Just like a mom. (On an unrelated note, here is a very interesting short essay on not having kids). I'll be adding the baby monitor to that list of Practical Tips, too.

Good things.......well, my godmother/mom's best friend visited again. We absolutely love having her here. She's full of energy and has a beautiful healthy laugh. She was determined to get me started on some projects in the kitchen (my defense/coping mechanism is home improvement) and she succeeded. Twelve years of avocado green plaid wallpaper (with matching drapes), and now it is all painted a fresh, clean beige. I've removed the soffit from over the sink to add some height and am currently in the messy "slather it with joint compound and sand it all away the next day" phase. Up next: paint the cabinets or install the new flooring. Can't decide where to start.

Another good thing: sold mom's car! It has been sitting there for a year. Excellent car, clean, low mileage, just sitting there depreciating. A friend of a friend's grandson is turning 16. Happy birthday! And thank you! We really needed that money.

Possible good thing: somehow I survived healthcare.gov. I needed to lower mom's premium (I discussed earlier how it would have doubled next year) as well as get my own health insurance. I went through the process on the phone with a very nice young man who, at the end, said I wasn't eligible for tax credits or cost-sharing. Um, what? I'm unemployed, dependent on my permanently disabled mother whose only income is SSDI...aren't we the poster children for the Affordable Care Act? So I went online and did it myself and, lo and behold, the two of us will be getting excellent coverage for $70 a month...that includes both of us....$70....Obamacare, how do I love thee? Let me count the ways...and let me pray there are no red tape hiccups or hidden fees.

My dad visited. It is an innocuous statement for anyone who doesn't know my family. Long story short: my grandparents basically disowned him when he left my mom. Mom and I moved in with them (her in-laws). They became the closest family we've got. Lots of tension, lots of water under that bridge. He wanted to see mom, to apologize, and to see his parents. I never thought I'd see the day when we all sat down for dinner together. It was truly surreal. Damn does life change fast.

It's now been almost 14 months since mom's craniotomy. Her cognitive abilities continue to decline in the sense that she seems to process things extremely slowly, or not at all. She is terribly weak and often needs help sitting up, getting out of bed, and definitely getting in and out of the tub. Increasingly incontinent, as noted above. She still has moments of emotional clarity when she experiences intense sadness, but I think these fade quickly, thankfully. With the discovery in the ER of new emboli, she has been taken off Avastin (which can increase chance of clotting) and Lovanox (which apparently wasn't working). She is now on Pradaxa, a different blood thinner that, of course, does not have a generic. We have another MRI in about a week, and meet to see the results on Christmas Eve.



Image: I read Marvell's "To His Coy Mistress" again the other day, first time in years, and I still love that line "But at my back I always hear/Time's winged chariot hurrying near." The image is from Dali's Divine Comedy series, Purgatory Canto 26. I feel that they work together.

from the front lines..

I am, once again, in a hospital room. We are in the ER, decidedly less pleasant than the rooms in the higher floors. This morning I found mom on the kitchen floor, though she couldn't remember how she got there. She suspects she fainted or blacked out in the foyer, and crawled toward the kitchen. Her heart was beating fast and she had trouble breathing. We decided to drive to the ER and now, two hours later, we are regretting the decision. She feels fine. We're both tired. She wants a nap and I want my usual Nespresso double shot.

In other news, we had an MRI on Wednesday that was "stable." I think "stable" means something between no growth and 15% or 25% growth, not sure which. So we're sticking with our treatment. This blog is an outlet, a place for me to be honest, and to be honest I was disappointed. I wasn't relieved like you would expect a person to be. I was actually hoping for the decline to continue so that we could end...well I was going to say "this phase of our lives" but that isn't right. It would be the end of a phase in my life, but it would be the end of hers, plain and simple. God, what a mess of emotions and logistics this has all been.

In less uplifting news, we had our first experiences with incontinence on Wednesday. Not sure if it was just that day, or if this is now a "thing" that we'll be dealing with. Regardless I bought a vinyl mattress cover and some adult diapers. I'll be getting in touch with hospice soon.

My mood has been great lately, and it has felt really good to help mom, even stripping her urine-soaked sheets.


Update: the chest exam showed multiple new pulmonary embolisms. We knew there was one in her chest in March when she was hospitalized with pneumonitis. She has since been taking Lovenox, an anticoagulant to prevent the formation of new embolisms...guess it hasn't been working. This discovery obviously changed the direction of care that the attending and resident wanted to steer us toward. All we wanted was to go home. A few phone calls, a plan to meet with a hematologist, a refusal of care form, and we were on our way. We were overwhelmed and tired. We have some serious conversations to have in the next few days; hospice means discontinuing treatment...palliative care but to what end?...if she has a heart attack in front of me do I call 911?...wouldn't that just put us in the same place we were in yesterday: a place where we know death is imminent and we just want someone to tell us what to do!


Image: my view here at Duke Regional Hospital's Emergency Room.

groundlessness

It's been a little while since I've logged what has been going on with mom. The main reason being that nothing is going on. Rewind a bit..

We had an MRI almost two weeks ago and it showed continued growth. Nothing huge, but growth nonetheless. The Avastin alone apparently hadn't been enough, but she hadn't yet had enough exposure to Etoposide/VP-16 in order to determine if it was also ineffectual. For the first time, her neuro-oncologist brought up the option of discontinuing treatment. It was a relief in a way that I can't describe, and I imagine anyone who hasn't been in this situation would consider that feeling somewhat cruel. We decided to give treatment another month, increasing her dosage of Etoposide, and do another scan. I demanded that the doctor give me estimates for time left. She guessed 2-3 months if we stop treatment, and perhaps 6 if we continue.

Mom was a wreck, of course, for a little while. She was crying a lot. But the last week she has been okay, though spending almost all of her day in bed. She gets up for the bathroom, to pester me about pills, and to eat when I remind her to do so. Otherwise she is sleeping. She's grown incredibly weak, and I've been helping her with clothing, sitting up, and getting tucked into the bed. So she's just sort of there, still, quiet, occasionally wandering for a beer. Other caregivers might be a little shocked. Most (if not all) of the therapies for cancer patients require that they drink no alcohol. Mom has stubbornly refused to give up beer, though she hardly drinks any these days. I fought her on the matter in the beginning, but soon realized the futility. She is going to die from this regardless of whether she has a few cans of awful light beer.

I've met with a therapist who wants to do some cognitive-behavioral therapy work. My father suggested I get in touch with a hospice chaplain we know in order to get an idea of what is going to happen. I've been reading Buddhist approaches to death and grief. Pema Chodron tells us that we must abandon hope:

If we're willing to give up hope that insecurity and pain can be exterminated, then we can have the courage to relax with the groundlessness of our situation. This is the first step on the path.

And as we walk, Tagore reminds us:

Death belongs to life as birth does. The walk is in the raising of the foot as in the laying of it down.

 It all seems to just bounce off the surface, though. I simply can't fathom what form my grief will take.

Aside from a few art projects and my addiction to kakuro (try it here), my main outlet has been slowly moving toward a kitchen remodel. I'll be selling the house when mom is gone, and it is not going to sell with the original 1964 kitchen. With my stubborn desire to do everything myself and thrifty schemes I think I can give it a major facelift for maybe $3000. I can't wait to get rid of the green linoleum flooring. I'm a little worried about asbestos, though. I don't want to pay someone for demo, I also don't want to inhale asbestos. This is when I want to collapse and yell "I need an adult!"


Image: still of a final scene from Lars von Trier's 2011 film Melancholia. Knowing all life will be destroyed by a collision between Earth and another planet, a woman, her sister, and her nephew sit on a hill and await death.

soldiers wouldn't leave their liquor behind, ma

I escaped earlier for a couple hours. On my way home mom called. The conversation went something like this:

Me: Everything OK?
Mom: Well, sorta. Do you have Candy's number?
Me: We don't know anyone named Candy.
Mom: Is it on autodial?
Me: I don't know who Candy is, mom.
Mom: The girl who sleeps in your bed.
Me: Ma, I sleep in my bed and no one else. [can I remember the last time I shared a bed with anyone? caregiving is lonely]
Mom: Well, there's all this liquor here in boxes that the army left. They packed it and delivered it but they're gone now.
Me: There's no army, mom, and any liquor in the house belongs to me.
Mom: I'm just worried about an audit. Does your sister keep receipts? [I don't have a sister].
Me: There won't be any audit. I'll be home in ten minutes and then you can show me.

Ten minutes later...

Mom: The box of beer is downstairs.
Me: We live in a single-story house.
Mom: Well let's go downstairs.
Me: Down the hall.
Mom: Ok, let's go down the hall.
[down the hall and in her bedroom]
Mom: There's this column that the army uses to shimmy the boxes upstairs. [she's pointing to her window]
Me: There's no army and our house doesn't have any columns.
Mom: [dazed expression]

That's a pretty normal exchange these days. I have my glassware from my old house packed in boxes from the ABC store, so I understand where she got the liquor idea from, but the army is out of the blue. I imagine Candy is today's name for my "sister"/alter-ego.

Though normal in context of the last few weeks, this is a big change from a few months ago. I feel as though we're nearing the end (aren't we always), but physically there are no signs of it. Years ago she told me that if she ever "lost it" (her mind), I shouldn't prolong the inevitable. If her body were as messed up as her mind I think she could handle that conversation, but as it is, she's still in fight mode.


Image: Photograph by my mom's father, WWII, armored cars parked along the autobahn after V.E. day. 

life in the ship is beautiful

Today mom thought she was on a ship, her bedroom one of many staterooms. I opened the blinds (which she always keep shut) and showed her our front lawn. That settled that. But it seemed a delusion a propos my previous post and I wanted to share.

It reminds me also of a quote from Iron Island (Jazireh ahani), directed by Mohammed Rasoulof. An abandoned oil tanker in the Persian Gulf becomes a home to many poor families. It is slowly sinking. The "teacher" to the many children on the boat has them repeat the following each day. I paraphrase:

"The sea is vast and spectacular.
The ship sinks more in the sea each day.
Life in the ship is beautiful."

I think it's a lovely credo.



Image: Gentile da Fabriano's "St. Nicholas Saving a Ship from the Tempest," c. 1425, link, from the predella of the Quaratesi Polyptych.

such stuff as dreams

Earlier this evening my mom came into my room crying. She's been extremely emotional lately, crying often, and she was concerned tonight about me. She worries about what will happen to me when she's gone, and I would imagine she worries about those last moments--where she'll be, if I'll be there, if she'll be in pain, etc.

"I'd like to be sitting with you, drinking a glass of wine," she said. She hates wine, but I know the sentiment. She wants to meet death on her terms and that is a situation that very few of us are ever afforded. And so I briefly began to look at, for lack of a more pleasant yet concise term, euthanasia. Needless to say that didn't last very long. I like the idea of us both sitting down, saying "enough," and enjoying each others' company as it ends. But she's stubborn and I can't imagine her ever reaching a point where she has had enough. Were she in pain, yes, she would ask for relief, but I don't think she would consider that as accepting death.

It has taken her over a year to come to terms emotionally with her prognosis. She still has moments when she thinks she can "beat" it, but for the most part she acknowledges that this will kill her. It's a sudden wave for her. For me it has been a sea change, the slow ebb of the woman who was my mother.  I've had over a year to grieve, slowly, and in my own (surely unhealthy) way.


After writing the above I decided to look up the origin of the term "sea change." Wikipedia and Shakespeare...what would life be without them?

"Full fathom five thy father lies,
Of his bones are coral made,
Those are pearls that were his eyes,
Nothing of him that doth fade,
But doth suffer a sea-change,
Into something rich and strange,
Sea-nymphs hourly ring his knell,
Ding-dong.
Hark! Now I hear them, ding-dong, bell."

-From The Tempest Act 1 Scene 2, here. The brief wiki article is here.

Appropriate I think.


Image: John William Waterhouse's "Miranda," 1875.