Time for an Update

Is it time for an update? I suppose.

As you remember, I’ve moved from my regimen of Herceptin and Perjeta coupled with Navelbine to TDM-1 or Kadcyla. I’m on round three. It’s given as a single infusion every three weeks. Here’s how it’s going.

Pros:

• Much less heartburn
• GI is manageable
• Food tastes mostly fine
• Week 3 is almost sort of normal-ish
• It’s nice to not have to be in the infusion chair so frequently

Cons:

• I run fevers for about two weeks; I think the fevers are getting worse. I have to use acetaminophen or NSAIDs and really stay on top of dosing.
• Coupled with the fever, I feel that long bone pain I’ve written of in the past. I have this pain (it feels like you do when you come down with the flu) every time I develop the fever. It’s how I know it’s time to take some meds.
• I have low energy throughout the cycle, compared to my old self. It’s especially strong during the feverish part of the cycle. That means frequent naps, exhaustion from minor activities (like a trip to the bathroom), etc. It does seem a bit worse than the previous regimen. I am more “disabled.”
• I may not be making progress, at least with the soft tissue. My antigens are up significantly, not a good sign.
• Because I don’t feel that well, nearly everything I do is impacted.

The Post-Infusion Camping Trip

A dear friend wanted to spend her milestone birthday with me, so we arranged to go camping; she was hoping that we could just sort of travel and boondock, but it was Fourth of July weekend. We wisely made reservations. Of course, infusion day was the day before; nothing I could do. But we have an RV with all the comforts of home, although it is exhausting to pack – we managed to do it. We left for camp right from my infusion. It went ok that night; this was only round two so I wasn’t sure what the pattern would be. We were ready for the worst.

Our Campsite

I think it’s hard for high-energy people to be patient with us; my girlfriend brought a fun friend who is more at her scale, which was wise. I started out mostly ok, but by day three the fever cycle made itself known. We did have some fun: we ate, we saw some great fireworks, and I did what I could to be celebratory, but I also fell asleep in my camp chair, didn’t go for many walks, got pushed in a wheelchair and ate very little. I even forgot to bring out her birthday cake on the right day.

As time went on, the more difficult it became to reconcile the different energy levels. By the end of five days, I was ready to just be in bed, so instead of wandering with them, we headed home. (We had had a technical difficulty as well; wandering probably wasn’t a wise choice at that point.) That illness kept up for another week or so. I am just not up to much of anything when I feel like this...and this is becoming the majority of the cycle. Plus, it seems to be getting worse.

So much so that I thought that a strange lymphedema that I developed – it honestly looked like my breast was growing back – looked worrisome. I ventured downtown to see my doctor, and she sent me to the surgeon. Yeay! Another surgical procedure on my very favorite spot! (Yes, that is sarcasm.) It was mostly good news: a seroma (basically a large clot of congealed blood) not infected, no cancer seen. And eliminating it means that suddenly I am breathing better. I had no idea that that was an impairment to breathing. But once again, I’m tending an open wound to my chest wall. Gah!

That means I’ll be tending it while I’m on my European trip. Yes, Europe! In an expression of major financial and possibly medical irresponsibility, I’m going to take a river cruise. (But my doctor approves; it’s ok!) You’ll read more about it in my other blog, www.sunstarlandings.com. That type of cruise made sense to me when I arranged it many months ago; I’ll finally get to see all of those things I had not been able to since high school, the things that poverty followed by parenthood and middle class life denied me. Even if I'm not well, I can see windmills, vineyards, Deutsches Eck and Lorelei from my veranda.

The cruise is scheduled for week three. See how that works? But even if I’m not that well, I’m well enough to try. I’m going dammit! Then I’ll get the CT scan, the bad news and the plan for the next thing. I’m sure there will be something. There’s always something.

Feel free to share your thoughts and feelings below.

The Paper Chase

The raining paper scene from "The Paper Chase"

There is a great movie from 1973 about the rigors of getting a law degree; it’s called “The Paper Chase.” At one point, out sheer frustration, the protagonist climbs to the roof of the school’s classroom building and throws down the thousands of pieces of paper that composed the record of his academic career: notes, papers, worksheets -- a rain of paper. That image is what comes to me when I have to waste my time creating a paper trail, often needless, for the bureaucrats. I have such limited energy; I sure wish that wasn’t where my energy had to be focused this week.

I should explain why I need to do this: they need to pay me. That requires scrutiny. Here’s how I am lucky to survive now (and pretty standard for most American workers), and what I hope happens in the future:

• Short Term Disability:Duration: up to 6 months
  Benefit: Full Salary
  Healthcare: Normal employer-paid, with premiums and normal employee costs

• Long Term Disability:Duration: After 6 months qualification, if approved, up to (in my case) age 65
  Benefit: 66.67% of my former salary, minus SSDI, below
  Healthcare: 6 months, employee/employer paid, followed by COBRA (a federal program that lets you buy your own employer healthcare at full cost to the employee.)

• Social Security Disability Insurance:Duration: If qualified, as long as necessary, sometimes with periodic checks
  Benefit: Based on my long work history since 1976
  Healthcare: after 24 months, standard Medicare

and my tiny Ace-in-the-Hole, I was a state employee:

• Retiree PensionDuration: Life, after age 60 for me
  Benefit: 1.7% of my meager salary averaged over the last 5 years, multiplied by the number of months worked (so, not a lot)
  Healthcare: Retiree Healthcare, with a premium, deductible and out of pocket, similar to now

(Note: none of this anticipates what will happen when the new healthcare law gets past. I can't even begin to speculate, but none of it looks promising and will affect multiple programs. This also doesn't anticipate Medicaid, yet.)

So, you got all that? And all of them will require paperwork. Each actor involved in this drama has a fiduciary responsibility. In other words, they have to have proof, and that means paperwork: work records, doctor’s statements, scan findings, etc. My doctor sent some 65 pages over to my Short Term Disability administrator.

Somehow, in my initial qualification, they missed an important point, so I was put into the “Return to Work” workflow. If you are off for pregnancy, for instance, you’re going to return. So you give them a general idea when you expect to be back, and they check in with your doctor at that point. Somehow, the “Stage IV” was missed in all of the fun, so they expected me back to work June 19. But that information is buried online, and they did not communicate with me in any way until it was too late.

My first clue was a call on a Sunday. I didn’t recognize the number, so like all good Americans, I didn’t pick up. It was a MetLife customer service representative, wanting to know if “I wanted an extension.” Oh, No! What fresh hell?

I’m being paid weekly now, so any blip is going to hurt. Sure enough, I logged online. I had been suspended. I had to wait until the next day to talk with someone.

<rant>Ok, time for one of my little rant breaks on behalf of better UX. If you are a CEO of a company, and you have a Voice Response phone system, I want you to become a regular user and try your system, like every Joe that has to slog through it. You will find out that there are dead ends, hang-ups, and possibly the worst music you’ve ever heard. You’ll likely have to repeat the same information several times. You may try to talk to the machine, but she won’t understand your NBC Midwestern accent. Please do this, then fix your system and save us all. I’m begging you! </rant>

I slog through a few things and speak first with a nice CSR. He’s quite sympathetic when I start to tear up, and he gets me through (eventually and quite persistently) to my case manager. Sure enough, my doctor hadn’t sent through any of the information for scans and findings and a return date.
Um, I don’t have a return date. I’m Stage IV. While my regimen has changed, there are no new scans. But I’m really never coming back.

“Oh my god,” she said after a moment’s paper shuffle. “It says that right here.”
Ah-hah. They missed the important thing: I’m dying of cancer. Great.

Someday, maybe it will be common for folks to come back to work, even after Stage IV diagnoses. But that day isn’t today. I can hope for 10 years, but it isn’t going to be 10 years of wellness, even so.
There is a different process flow for folks who aren’t coming back. She promised to put me into that, to take this to her Unit Manager, and to get moving. Well, that problem seemed to be resolved.

Hahaha...silly me!
I wait a day, check online. Suspended.
Another day...still Suspended. Clearly, no paycheck this week.

Ok, time to navigate the wonderful VR system again. I get another great CSR. First he tries my doctor, but no luck for the doctor or the nurse. He gets ahold of my Case Manager again (I think they use IM to check for presence.) I wait a while, but I finally speak with her. She’s still waiting on the doctor for paperwork. “Why?” I ask. You basically have everything you need already and there are no new scans. She puts me on hold to go talk to her supervisor. (I should mention I’ve cried like three times already. This mortality stuff isn’t easy to talk about, even for me.)

Lovely hold music, happy hold music...walk and breath...hold music...remember, I need a nap after going to the bathroom!

She gets back on. I’m approved through August. Then they will start me in the process flow for long-term disability. Sheesh. I wonder: Even now, maybe they are hoping I’ll die first. The next day, she calls and confirms that the supervisor flipped the switch. Paychecks back on, next week.

When I spoke with the doctors’ social worker (thank God for her, the paperwork warrior) she had sent them yet another document that clearly stated “Stage IV, not coming back” in more medical terms. But come August, my scans will still be needed.

I can’t imagine what people do who’ve never worked with bureaucracy and have no head or patience for paperwork. The ability to manage healthcare and disability is a special skillset composed of patience, communication skill, good office management coupled with endurance and persistence. I learned it working in government. How do people who have no ability in this area survive? Is this why we have so many homeless and chronically ill? They couldn’t manage the paperwork so they just dropped out or died?

Sigh. At least I’m hearing now from the Long Term Disability people, and a claim is being opened. A new paper chase has begun.

Share your paperwork fun in the comments below or on Facebook or Twitter.