New and Improved Surgical Plan

Ok. If I have learned ANYTHING during this process, it is that you can never, ever trust the first plan the doctors tell you. Because, they will change their minds.

Which is totally fine – we trust them completely – but sheesh – it makes planning and preparing very difficult.

When last we updated, the plan was to finish chemo, take a leisurely month to recover, then start with the liver surgery. Two weeks later, lung #1. Two weeks after that, lung #2.

NOPE.

Chemo – April 17

Chemo pump removal – April 19

Scans probably April 20

Thoracic surgery consult – April 21

Surgery #1 (removing 2/3 of right lung) – April 25

Hepatic surgery consult – May 5

Surgery #2 (removing a piece of the other lung) – May 9

Wedding Anniversary – May 15 (7 years! My gift is NO CANCER IN MY HUSBAND which makes it better than jewelry.)

Surgery #3 (liver surgery) – May 16 (you know, the one that was supposed to be first.)

Then… well who knows. Presumably, he’ll be “NED” (no evidence of disease.) !!!!!

Again.

!!!!!!!!!!!!!!!!!

They are doing surgery sooner and with less recovery time because they think he can handle it. It’s a good thing, because it means the cancer will not have had a chance to regrow after his last treatment.

I don’t know about maintenance chemo or any of that, but I do know that once it’s all out, the outlook looks much, much brighter.

We’ll be taking a minute to breathe this weekend, then it’s off to the races! If you’re on our “meal train” list from my sister, she’ll probably be sending out some more info next week. Definitely going to need to call in the troops for this next insaneo month.

Love and thanks to all of you!

wedding 2
PS – Here are a couple of wedding pictures. Because 7 years! No itching here.

Wedding

The importance of “i-dont-give-a-damn-what-you-call-it” care.

I’ve always been interested in political science. If I had watched the West Wing sooner than a few years ago, I’m certain that I would have landed in the political arena. Perhaps a chief of staff to some Warren-esque senator. Maybe an appointee or staffer on the governor’s staff. I think I would have liked to help to shape policy and to understand electorates. It fascinates me. Government is as complex as it is focused. Complicated as it is fickle. It is, all at once, efficient and irreparably broken.

There is much to study these days. I was recently at a political science lecture and the speaker talked about how few moderates truly exist in the world. While there are more “independents” than ever, people vote as predictably within that block as they do when they have taken a side. (Millennials, it turns out, hate labels. I agree with this seeing as I hate the term “Millennial”)

We’ve all taken sides. And in some cases (maybe a lot?) I don’t think we’ve made those decisions for ourselves. I think someone else has made those choices for us.

 

All that’s to say that lately, despite my political leanings and diverse interest areas, I’ve become a single-issue voter.

The thing that keeps me up at night is healthcare. (I know, duh, right?)

But. If the republicans take away the pre-existing conditions clause, making it virtually impossible for my husband to continue to fight his cancer, it will be very, very hard to look anyone who voted for them in the eye.

Let me be clear. We have been the recipients of a lot of financial support from our very generous family. We’re doing OK. Because he can keep COBRA for 18 months (oh, BTW, it’s $700/month for that. It would have been $1,400 if I hadn’t been able to put Conor on mine. For reference – that is unsustainable without the generous help of others) Preston is insured for the forseeable future. And I’m sure if he lost his insurance, our family would help then, too.

But, for perspective.

He has already met what used to be considered a “lifetime maximum.”

One of his chemo drugs (ONE! He takes 6 every time!) costs $18,000 for each dose.

The CT scans he will have every six months for several years costs $7,500.

If he ever loses insurance coverage – if, as suggested by the republican legislature – they remove the requirement to cover “preexisting conditions,” – we would be bankrupt in about 3 months. Our immediate family would not be far behind us.

I get it. Insurance premiums are the pits. And they’re getting higher (albeit, not quite as fast as they were before the ACA was passed). It is kind of annoying to think that healthy people are getting the proverbial short end of the stick.

Men in seats of power have been saying things like, “Why should men cover maternity care?” (I don’t know, maybe because you had to get, like, born?)

I read an opinion piece on Fox News. I do that a lot – get lost in the thinking on the other side. It helps me to understand it. I know that all of these people aren’t just assholes – so what’s driving the decision making?

Well this guy, Andrew Napolitano, says this:

” … under the Constitution, health care is not a right; it is a good — like an education or a gym membership. You work hard, you decide what goods to purchase. If government gives you the good, that does not magically transform it into a right.”

I’m no constitutional scholar, so I’m inclined to agree with him here. I don’t think that they spell out in there that the Federal Government should mandate health insurance coverage.

Of course, health care looked a bit different. For example:

“When the idea of germs causing disease was first introduced in Europe in the second half of the nineteenth century, especially with the work of Pasteur and Koch, American doctors vigorously denied such a notion. Science did not apply to American medicine. Americans, they insisted, were an exceptional people.” – See more at: http://historynewsnetwork.org/article/149661#sthash.D1JTcANS.dpuf

So. That’s cute. Maybe the framers of the constitution had a slightly different idea about, you know, medicine.

Health insurance didn’t come around until the 1930s, and at first, was up to individuals. The federal government created tax policies to help avoid post-war inflation thus creating the tax deduction that led to employer-based healthcare.

By the time anybody figured out this was insane, the health insurance industry was already dug in. By the mid-1960s, this system was essentially universal.

It worked relatively well while costs remained low and employees stayed with the same company for their entire career.

But, what if, I don’t know, for example, you get fired from your job because you have cancer? How do you pay for insurance then? The system doesn’t think that way. When it came around, it wasn’t built for that eventuality.

Oh yeah, this too – life expectancy today is somewhere around 78 years. Between 1750 and 1800 it was half that. (Turns out when you start believing in science, you live longer.)

So here’s what I’m saying. Healthcare is a RIGHT. It is not, as Mr. Napolitano suggests, a GOOD. There are very, very few Americans that could withstand a catastrophic diagnosis like stage 4 colon cancer without insurance. Hell, even firmly in the middle class with insurance and a lot of help from our family and friends, it’s tough for us.

But look. I get it. Someone told you that “Obamacare” was to blame for all of the problems and higher bills so we need to repeal it!

Hold the individual responsible!

Ok, fine. So if Preston has a recurrence of cancer, we’d be able to pay for his treatment for about 3 months. (But we’re going to increase the Health Saving Account allowance!) Great. So we’ll get what amounts to a 30% discount on $1 million/year treatment. Thanks, Paul!

But I don’t like paying for someone else!

I don’t think that’s true. I believe that Americans – conservative or liberal – do care about helping others. We’re not arguing whether or not someone should receive life-saving medical care, but rather who should be responsible for it. Have I convinced you yet that the flaw in that concept is that almost no one would actually be able to do that?

I’ve rambled on enough. We’ve got some serious problems with healthcare in our country. Capitalism has fueled some of the great advances in the field. The drugs that are saving Preston’s life made someone millions and millions of dollars. But they made the drug, and they may not have done that if they weren’t going to make those millions.

All I’m saying is that before you applaud any changes in the healthcare law, before you give a big ‘ol high five to Mike Pence for trying to negotiate a deal, think for a minute about whether or not you believe in that deal because it will make all of our lives better, or because someone else told you it would.

 

 

The surgical plan

I just wrote a REALLY long post about my thoughts on the ACA debate happening at the federal level (and kitchen tables everywhere!)

But, before I release that in to the big, blue world, let me give you an update on P.

Yesterday, he wrapped up 11/12 chemo treatments.

“Only one more!” I said, to which he replied,

“No ‘only’ about it.”

Lesson being – chemo continues to be a very tough physical and mental battle.

After his next treatment, he’ll get scans and then a small chemo break before surgeries.

He’ll begin with his liver, and then, in what we expect to be rapid-fire succession, the two lung surgeries.

Liver will be in Chapel Hill (I assure you, even with the fact that they are helping to save his life, this will not make me a UNC fan) and the two lung surgeries down the road at Rex.

As my boss, Ret, said “Your village stands ready for whatever comes next!” and they do, so now it’s just a matter of chugging through the next two months before the upheaval begins again.

We’ve got trips to the River planned and I have taken a few days off to take Conor to some fun places around town as a family. Preston will get three weeks to feel relatively normal – something that hasn’t happened since somewhere in August 2016. (a note – sometimes that feels like a really long time ago, and sometimes not so much.)

Oh, and get your fave casserole recipes ready, because come surgery time, I’m going to take all of you up on the meal offers. 🙂