I can’t believe my last post was nearly a month ago. Forgive our absence from your lives and rest assured that we have been enduring.

Last Friday was Ken’s radiation simulation. What should have taken about 2 hours, ended up taking about 5 because Ken’s labs showed that he was dehydrated again. More than two and a half hours of our visit were dedicated to giving him intravenous fluids. (We had the honor of being the last patient/caregiver in the office.)

The radiation oncologist met with us for about 30 minutes to discuss what we should expect (pain like a bad sunburn about 3 weeks into treatment and lasting about 10 days after treatment) and to tell us his approach. He explained that they will use the results of the simulation to prepare for treatment. Apparently it takes approximately a week to determine the treatment plan, code the treatment into the computer, test it on a “dummy,” evaluate the tests, and repeat until the doctor is happy with the approach. They will call us later this week to give us his start date and to discuss what time he’ll need to be at the hospital every day.

Ken will also be receiving chemotherapy daily during radiation. We’ve been trying to get approval for the chemo pill since the beginning of June so Ken won’t have to wear that stupid chemo pump (with its infusion noise every 77 seconds.) After a week of trying to navigate the system to get the approvals, the doctor’s office called to ask for help.  I was on the phone with our insurance customer service area for more than an hour. Even the customer service rep had to call three separate departments within United before she got an answer. “Approved,” she said.  Two days later, I received a denial letter stating that his “BSA” needed to be above 1.92m^2.

Seriously, what the heck does that even mean?! When I called the doctor’s office, the nurse said that the insurance company had made a mistake. They had the wrong height for Ken and miscalculated his “Body Surface Area.” She called them and, finally, the chemo pill is approved, though I won’t really believe it until we get the approval letter. Ken will need to take 6 pills daily, Monday through Friday, for approximately 6 weeks.

What more is there to say? To quote DH Lawrence, “I never saw a wild thing sorry for itself. A bird will fall frozen dead from a bough without ever having felt sorry for itself.” Self-pity? What would be the point? It will not change the path we must walk.

 

I watched The Martian on my trip to Tampa recently. Usually, it’s my preference to read the book before watching the movie but I’m having trouble immersing myself in books these days. I just can’t concentrate, I guess. (That’s a real disappointment to a reader!) It took me at least three weeks to read a little book called Courage and Defiance about the Danish resistance efforts during WWII. (Speaking of WWII books, last December, I re-read The Guernsey Literary and Potato-peel Pie Society, a novel that I highly, highly recommend about the German occupation of Guernsey.)

Anyway, back to The Martian (in case you haven’t seen it, don’t worry; there are no spoilers in here) and our main character, Mark Watney, saying:

At some point, everything’s gonna go south on you and you’re going to say, this is it. This is how I end. Now you can either accept that, or you can get to work. That’s all it is. You just begin.

That’s life, right?!  Some days, I think: I just can’t do it (or can’t do it anymore). But what does that mean, exactly? If I just stop right now, what would happen? No clean laundry, no garbage cans carried out to the curb. The bills won’t get paid. The little guy: 1) will not do his homework; 2) WILL stay up too late; 3) might eat cereal (or candy) for dinner. Well, that won’t do and so, I “get to work.”

Speaking of which, I’m late on the updates about Ken:

[UPDATE] Yes, we met with the radiation oncologist last week. He was fantastic: kind but direct (no sugar-coating for us!). We’re also very fortunate to have a close friend at the same doctor so we can share support and learnings and, someday soon, successful outcomes. Ken’s cancer is so rare the doctor did a bunch of research of treatment options while we were there and then consulted with Ken’s oncologist. They agreed to use radiation on the primary tumor. As Ken reminded me this morning, the radiation oncologist is going to use electron beam therapy on the tumors in the groin, pelvis and scrotum. He says the electron therapy should prevent these areas from growing further during treatment of the primary tumor.  The radiation oncologist says to use anything more intense will cause significant skin damage that would be slow to heal and could delay surgery or the introduction of Avastin to Ken’s chemo cocktail.  He also described radiation like a really bad sunburn and promised that there are creams to manage any discomfort. Huh.

Thursday was a chemo day. Since we can’t start radiation for at least two more weeks, the oncologist said that Ken needed a full chemo treatment last week, pump included. That was kind of a bummer and Ken had a miserable weekend. The rationale is irrefutable though:  if chemo stops, both doctors are confident that cancer will take a road trip through Ken’s lymph system which would be a very bad thing. And so, “Pumpy” came over for the weekend.

Our new health insurance became effective on June 1 and you know what that means, right? We have to get approval all over again for his treatment plan. We also have to get new scripts for all his medication since our prior insurer forced us to use their mail order pharmacy. I wish health plans would transfer treatment plans and approvals like 401(k)s transfer balances.

Because it took me a whole week to post, we had chemo again today. It was a “short” day and we were back home early in the afternoon. I worked all morning from the cancer treatment center very well (technology is AMAZING).

A quick story: we’ve stumbled through some interesting physician dynamics throughout our journey. The rare nature of Ken’s cancer has made him interesting to a variety of physicians (and let me tell you, it feels a lot like the extended family circling around the aging billionaire waiting to see who is in the will). We’ve ignored referral patterns and had some weird communication issues as a result. The most interesting however was the conversation we had last week with the radiation oncologist. He told us flat out that we need a different surgeon, one with more experience dealing with complex cancers. AND he said that Ken needs to have his surgery in a different hospital than the surgeon admits to. Apparently, that’s a fine hospital for appendicitis. (As Haley would say, “Burn!”)

(By the way, this week’s blog title is a quote from the original Star Trek series, Season 1, Episode 19.)