Wednesday, October 05, 2016

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!


Ruth Stewart said...

I was praying for WG by name this morning, as I have been every morning since your last brain tumor post awhile ago. I realize my prayers are not different or any more special than the thousands of prayers that have surely gone up for WG over the years. But this morning, I sensed God asking me to fast for WG today. I'm human; I hesitated. But then I heard Him nudging me, "Do you really care for people the way I care for them? Sacrificially?" I want you to know that I do care, so I am fasting today for WG. And I am asking God to raise up your husband and astound the doctors. I am asking for a miracle that cannot be explained.

Ami Hendrickson said...

Thank you so much for your continued prayers on WGs behalf. And thanks for going the extra mile as you continue to lift him up. I, too, have been fasting for him lately. I don't know what the future holds for him, but I firmly believe he is in good hands.
God bless,

Dave Haase said...

Robert and Ami are a true inspiration to me and my family. Robert always has a warm tender smile and beautiful hello! Our prayers are with you. I stand firm that this is a situation where the church should be the church. The church beyond the four walls. How, remains to be seen. We will not give up! We will continue to pray without ceasing. Ami puts it best..."THIS IS ONLY TEMPORARY!" God's Grace is for us all. Amen! We love you...!

Summer Osborn said...

Amy this breaks my heart. You all are in our prayers. I'm so happy to see maddie is still around being a joy In a way she can. I found your page from a Facebook post my mom posted last night. love you all.��