WunderGuy vs. The Brain Tumor (Part III)

Fred refuses to quit. Wish he'd just give up and skulk off to shrivel up and leave us alone.

Recently, Robert's brain tumor is causing his entire body to spasm into the equivalent of a giant, human fist. He juts his head forward, perching his chin on his chest, stretching his neck. He cranks his knees up to his nose. Then, as the tension in his body builds, he bellows like a bull stabbed by a matador.

Imagine the joy that permeates our house when this begins at, say 3 a.m.

We're trying the gamut of things from meds to alternative options to try to help him relax. Because we've all discovered: if Robert can't sleep, can't nobody sleep.

I've learned a few things in the last month. At the top of the list, I've learned what extraordinarily bad taste it is to begin a conversation with "Have the doctors given you a time frame?" As if I am able to mark on my calendar "Should be a widow" on a specific date. As if I would want to.

I've learned that if you want to connect with People Who Get Things Done, blogging is an effective tool. Not long after I posted the last update, in which I related my abysmal meeting with some local Hospice representatives, a higher Hospice muckety-muck called me. We chatted a bit and she put me in touch with someone who coordinates a different branch of Hospice volunteers. It all sounds very promising, but nothing has actually happened yet. Still: yay, blogging!

I've also learned to be less prideful. I've always been very good at doing things on my own. I'm an only child. I'm a Virgo. I'm a Midwestern farm girl. I am the epitome of "I've got this." But I am discovering that if others offer to help share the load, it is a great blessing to let them.

When dear friends wanted to set up a GoFundMe for Robert's medical expenses, I balked. I'm not big on the idea of asking people for help. There are lots of folks worse off than we. But then my friend Paul set me straight. "Get over yourself," he said. "People might want to help and have no idea what to do -- because, really, there is nothing they can do. This gives them an outlet." So I squelched my pride. And I have been overwhelmed -- truly steamrolled flat -- by others' generosity.

That generosity is currently in overdrive. The same friends who did the GFM campaign are hosting a live theatrical reading event on November 6, here in Southwest Michigan, to benefit our family. I can't even wrap my brain around how much work and energy and time and effort these wonderful people have put into doing this. When eventually, I'm on the other side of crisis (I believe this will happen. Someday.), I want to remember this and pass it on.

And I've learned that there is no such thing as letting go gracefully. Nor should there be. Life is worth fighting for. It's bright and messy and sharp and sweet. It's an uneasy ratio of exhilaration and boredom, punctuated by both joy and pain. Robert's brain is shutting down. I hate this. Most of the time he cannot even reliably answer "yes / no" questions. But he will respond to some things on autopilot. If you say "How are you today?" He'll say "Great."

Some days I find myself saying "I love you" just to hear him say "I love you, too." On those days, I don't care whether he knows what he's saying or not.

A week ago, my friends Wendy and Aaron watched Robert so I could get out of the house for a little while. When I returned, Wendy said Robert had woken up from a catnap and been a little weepy. This was so unusual, I asked him if he remembered that. He did. I asked if he remembered what made him cry. He smiled: "I had a dream. I dreamed I was healed."

Ah, my love. May all your dreams come true.

"My Father's Grandmother was Native American"

Recently, my uncle made a DVD of a bunch of old family movies and sent it to my father. There, for the first time, I saw my great-grandmother -- a Native American woman I had heard about my whole life, but had never seen a picture of.

Throughout the country, there is a strong push to have Columbus Day renamed "Indigenous Peoples Day." Here's why I would support such a change...

*****

My father's grandmother was
Native American.
No one knows
What tribe she was from.
To hear Dad tell it,
His grandfather married her
Because he loved her,
Never mind how much it
Angered
The rest of the family.

I have seen her:
A thin woman
In a faded print dress.
The grainy
Sixty-year old
Super 8 film
Renders her skin
The same shade of gray
As everyone else's.
And yet--

When she died,
The family refused
To even name her
In her obituary.
To the best of my knowledge,
She has no tombstone.

My father spent years
Trying to follow
That branch
Of our family tree.
But it is long gone,
Leaving a hole in the sky
As every branch does
When it falls.
Still--
My father,
Eighty-one years young,
Remembers her.
And every time I look in the mirror,
My Great Grandmother peers back at me.

*****

WunderGuy vs. The Brain Tumor: Part II

or: The Saga Continues

It seems like only yesterday that I wrote about WunderGuy's adventures with the brain tumor hereafter known as "Fred."

WunderGuy and Maddie the Manx.

Perhaps that's because when you're within the same four walls all day, every day, the days all sort of blur together. Perhaps it's because I delude myself into thinking that not much has changed and, therefore, an update isn't really necessary.

But when I stop to take stock of things, I realize that they have changed. And so, here is an update on our continuing War on Fred:

The big news is that the experimental chemotherapy did not work. In fact, there is some indication on the latest MRIs that it may have contributed to two separate minor brain bleeds within the tumor. Since that was our last great hope for a Modern Medical Miracle, the medical docs have run out of options. They have washed their hands of WG and have told us to contact Hospice.

Which I did. However (warning, minor soapbox rant coming)...

I was unaware of the realities that are Hospice. I'd always thought Hospice, if personified was a sort of kindly grandmother of the medical community. Anytime someone said "Mother is on Hospice," I envisioned a well-coordinated army of nurses who took turns caring for the terminal person, giving companionship and supporting the family through the dark days that lay ahead.

I never imagined the two nurses / Hospice sales team who came and sat in my dining room. They set me straight. Since I am WGs sole caregiver, and he requires constant supervision 24 / 7, I could really use someone to come and sit with him so I can leave the house to do things like get groceries or pick up our daughter from school. Yeah, no: Hospice doesn't do that.

The nurses were clear. They were all about the money.

HospiceNurse: Hospice will cover all of his medical expenses, including his drugs and briefs.

Me: Great! But he's a brittle epileptic. He has to be on brand name anti-seizure drugs. The generics send him to the ER.

HN: Oh... Well, he'd have to be on generics. But they would be free! Also, he won't have to pay to see the doctor.

Me: Can he still keep our family GP and his neurologist of the past 20 years -- the doctors who know his history best -- as his docs?

HN: No. But it won't matter. If he gets pneumonia or something, if he's on Hospice, we can't treat it.

Me: So you just let him die?

HN: Hospice does not provide palliative care. Now let's talk about Medicaid.

Me: He's not on Medicaid. He has a small IRA which, since I'm caring for him instead of working, is essentially my retirement fund. We don't qualify.

HN: Well, you could always spend down the IRA and divorce him so he could go on Medicaid. Then Medicaid will pay for him to go to a facility and you won't have to be stuck here taking care of him anymore.

I am not making this up.

About that time, I showed them the door.

Don't get me wrong: I am sure that Hospice is staffed by wonderful, empathetic, competent people who genuinely care about doing the best they can for those who are nearing the end of their lives. We may still have to call them when WG gets a little closer to the end. But I was wildly unimpressed with the Sales Force. >:(

And so, we sit together here at home. I schedule my day like a general planning a military maneuver, so I can still get my work done in addition to taking care of WG.

As for Robert, he continues a slow but steady decline. He can no longer shift his weight in his wheelchair, or feed himself, or brush his teeth. Before he takes his meds, I have to remind him to think about swallowing, and talk him through what to do -- otherwise, he chews his pills. Since some of the pills are extended release, chewing them makes him practically comatose for the next 12 hours. (Fun fact: a week ago, I had to call the paramedics to come pick WG up off our driveway when he sank to the ground like a 200 pound sack of pudding as I was trying to get him in the car. In the rain. Med chewing. ::sheesh::)

But we're not giving up. We are still blessed that he is in relatively little pain. It's also not clear how aware WG is of his condition, which is something of a blessing. He sleeps a lot. He's not really able to hold a conversation. But he still has his gorgeous smile. I can run on one of those for hours.

We have the best friends in the world, who support us in countless ways. From the church members who hand-made bolsters for him to make his wheelchair more comfortable, to those who sit with him on occasion so I can get out on my own for a few hours, to those who bring a portable tie-dyeing party to our house, we are surrounded by fabulous people. One dear friend who is a nurse sent us an EIGHT BOX delivery of briefs and wipes -- all greatly appreciated. And I am forever grateful to Kathy, Kim, Barbara, and Lisa: writerly friends who started a GoFundMe for WunderGuy to help offset some of the bills insurance deigns not to pay. Like the $4000+ ramp for his wheelchair (an ongoing appeals battle continues), or any part of the handicapped accessible bathroom we had to put in, or skilled nurses to watch him if I have to go out, for instance...

Here's the thing: we're not complaining. Everyone is going through something. Right now, what we're going through is obvious and overt and we're grateful to those who are pulling for us. What you're going through might be more subtle and less readily recognized. Know this -- everything here on Earth is only temporary. We delude ourselves if we think that our relationships, our situation, our lives will continue in any particular way forever. This may be depressing to hear when things are going great. But it's a great blessing to think about at the moment.

Onward and upward!