Seeking...

Chances are you or someone you know has experienced depression. It's endemic to life in these broken times. I mean, who can take in any of the daily news and not be stunned by what feels like an increasingly oppressive, hostile, and violent world, one lacking in compassion and, well, common sense? While we all cope with these stresses in our own way, therapy is already in order for many of us, eh? And compound the usual depression-triggering stuff with illness, grief, loss, plus anticipation of early mortality, and you've got a bit of a messy emotional stew. I know that has been true for me and many other people I know with cancer.

In Cancerland, mental health therapy is sometimes regarded as "palliative care." That term, "palliative," has always had a strong association with hospice and end-of-life care/pain management, with the aim of helping patients stay comfortable, relatively pain free, and allowing them to die with dignity. But that idea of "palliative" is limited. "Palliative" in the broadest sense means "remedy" or "treatment." Sometimes, in the adjective form, it is used pejoratively to suggest a treatment that doesn't address the root cause of an illness, as in "pain medication is just a palliative." But more of us in Cancerland and the medical world in general are coming to understand "palliative care" as treatment that works in concert with other medical treatments to help us feel better, not just when we're dying, but at any point in our healthcare continuum. Those of us with metastatic disease may never be truly "well," but we can experience "well-being" often with the help of palliative care. So massage therapy, medical marijuana, guided meditation, fitness training, acupuncture, nutritional counseling, spiritual retreats, and yes, mental health therapy all count as "palliative care" when they are related to addressing the effects of cancer and cancer treatment. Which is kind of funny, since doing those things when one doesn't have cancer is what we call "a healthy lifestyle" or "self-care." Too often this sort of palliative care is regarded as a luxurious "extra."  It's not extra. It's important. And one of the most important forms, and often hardest to get, is quality mental health therapy.

Over the years, I've had conversations with people in the cancer community about the challenge of finding mental health resources to address specifically the concerns of cancer patients, especially those with metastatic disease, and especially those with lung cancer. It's a tall order. While there are some therapists who specialize in working with oncology patients, it can be difficult to access their services. Often insurance will not cover the cost of therapy, and the out-of-pocket cost can be an issue, especially for people who may not be able to work thanks to disease-related disability. Oncology counselors are often attached to larger cancer centers, and if you're not being treated at one of those, you might not be able to book an appointment without an in-house referral. And even with that referral, there's no guarantee you and the therapist will be a good match. If you are working outside a referral system, it can take hours and days of rabbit-holing online to find a few likely candidates to treat your mental health challenges. And even then, again, it can be hard to tell if you and that therapist will click. If you don't, it's back to the rabbit hole, which tends not to be a really fun place for people suffering from chemo-brain or radiation-brain, which can affect attention span and cognitive processing.

I don't have any easy answers for this dilemma. Several friends have suggested seeking out a shaman, but that feels too much like cultural appropriation for me. Plus, spiritual "teachers" who label themselves as such tend to send me running the other way. If I lived in a different culture, one that wasn't so consumer-driven and materialistic, one that came with a built-in wise-woman right at hand just there on the other side of the drum circle, I'd definitely be hanging out in her tent. Friends are also a great resource for when the going gets tough, and while they aren't always trained therapists, their help does help, and more than a few of them are pretty wise. Still, I think there's a benefit sometimes when a person you're talking to about your concerns has at least a little bit of professional distance.

My insurance doesn't cover therapy, and without insurance support, therapy is expensive. There are some therapists who set fees on a sliding scale, but it feels weird to negotiate the cost of a therapy session. Plus, I'm still looking for the right therapist (and so are some of my friends in Cancerland), someone smart enough and intuitive enough to call me on my bullshit, and empathetic enough to let me just sit there and cry. Also, I'd prefer someone older, with a bit of a rind on them, and (I'd hope) wisdom that comes from experience. It's kind of a tall order, since I think most therapists retire by 55! Probably I'm looking for Yoda. Or that wise-woman's tent. 

I Will Believe It When It Happens

And so, just over two months since my li'l tumor, Spot, was discovered by CT scan, I've got a date with the gamma knife to zap him out. Three dates, actually. Next week on Monday, Wednesday, and Friday mornings, my rad-onc is gonna kick Spot's li'l butt with her light saber. So far, we've gotten the insurance folks to play along, so let's hope it stays that way. Fingers crossed. Very, very grateful that I finally get to go see the woman with the power tools next week. It has taken a long time to get here, too long according to some medical professionals I happen to know. We're going to take a look at the root causes of delay in hopes that it doesn't happen to someone else.

Thankfully, I still feel quite well, with no real pain or symptoms from the tumor. I'm only dealing with that pesky anxiety that all metastatic cancer patients live with every day, wondering what each new scan result will bring. I'll know more about that at the end of July.

I hope this fancy and expensive treatment will keep disease progression under control for a good long while. I'm lucky to live where I have access to it and to have health insurance that will cover most of the cost. I think. So they say. At the moment. Okay, so I have trust issues when it comes to bureaucracies. I think that's pretty healthy.

My Bad. Or, Another Personal Essay Meditating, in Part, on the National Health Care Crisis, with Opinions Based on the Tedious Author's Experience, and Accompanied by Much Whining and Complaining

(This post is adapted and tidied up from one I included on my Caring Bridge Blog recently.)

Never assume anything. Like the fact that a referral to a provider within the same medical oncology group is to a provider who is "in network" for insurance. Because if you do assume, bad things will happen, even if you are one of the lucky ones.

Por ejemplo: Last week I was thrilled to have finally landed a consult with a wonderful radiation oncologist, one of the tops in town, who happened to have an opening when others who could treat me did not, and I got scheduled for a planning meeting for this very week! This good fortune befell me after nearly two months of waiting. And of course, any fool with good fortune knows that one must always check out the insurance situation when facing a super costly treatment. But yours truly, Assumptions Woman, did not: 1) because once Assumptions Woman signed up with this oncology group, the providers' offices did all the legwork of approvals, so Assumptions Woman had never had to check about insurance for individual providers in this group for past treatment; it just got handled by them, which was lovely and is no longer the case, and 2) because Assumptions Woman was freaking out as it had been some 50 days since her unruly Spot had been found, and she was so damn happy that she had finally gotten an appointment with a radiation oncologist, she didn't bother to ask if the rad onc was "in network."

My bad. Turns out she's not, of course. And it turns out the email regarding that fact and denying her service to me came to her office AFTER I drank her barium shake and was IN THE PLANNING CT machine and the pleasantly chatty techs were marking little X's on my body so that we could line up all the radiation beams correctly when I went in for actual treatment on July 8 as scheduled.

Every other procedure I have ever had in relation to this disease (except emergency surgery for a pericardial effusion) was pre-approved by my insurance before I could even so much as walk in the door of a clinic; I mean I couldn't even have a kleenex to blow my nose without the providers asking the insurance gods for permission, let alone a little ultra-sound or brain MRI. So, I assumed (what was that we said about assuming?) that the pre-approval process for radiation had all been done before I drank the barium and got on the planning table. Nope. We just went ahead and started the planning session without any approvals, apparently. Not sure how that happened, but I suspect poor communication all the way around had something to do with it.

So the lovely rad onc felt pretty crummy about all of that, and she's going to file an appeal with my insurance company so that she'll be able to treat me and get paid as an "in network" provider. That means she has to spend extra time dealing with nonsense, so I appreciate her willingness to pursue it. She can justify her appeal because she has some equipment and some techniques at her disposal that other providers nearby don't have (which, as I said, makes her one of the best around), and my li'l tumor, Spot, is in just a weird enough place as to be super tricky to hit with gamma rays without wrecking other important parts nearby like the small intestine and kidneys. Plus, my treatment has been way too long delayed by some things that look dangerously like incompetence or just crappy communication in the oncology group's broken bureaucracy. But, the appeal will take time, and will likely cause more delay, and if it's not approved, I'll have to get in line again with a different rad onc. Heck, it'll be time for my regular surveillance scans again before I get any radiation. Why were we doing those surveillance scans again? Oh right, to get timely treatment when progression is discovered. So much for that plan.

Thank goodness I still feel well and have no symptoms suggesting the cancer has spread. I am seriously lucky and very very grateful for that.

Several people have asked why I just don't run across the avenue and get treated at the other famous cancer treatment center in town. I am considering that, but in exploring that option, I am again confronted with some similar issues...long wait times to see providers, the prospect that some are not in network, the hassle of having all my records shifted over there, of having to tell my story again and again to new doctors, new nurse practitioners, a new bureaucracy. If I have to do it and insurance allows, I will; but I keep feeling that I'm so close to actually getting treatment with my current providers that I don't want to set myself up for another long wait time. Maybe it's something akin to Stockholm Syndrome. Of course another option is to switch all my care to Mass General under Dr. Shaw, where I am already a patient, and Dr. Shaw has indeed offered to schedule me for radiation up there. But the idea of returning to regular travel to Boston for care is somewhat daunting, especially when I know it is possible, at least theoretically, to get that care here in Nashville. Again, I am giving Mass General strong consideration and will do it if it becomes necessary. But it's just super-targeted radiation I need, not a fancy new clinical trial. At least not yet. And it's remarkable that I even HAVE ALL THOSE OPTIONS. Most people do not. Many people have none. 

For instance, take the fact that rural communities all over the country, but especially in Tennessee, are losing providers and clinics and hospitals faster than you can say "treatment delay, " in our case due to our state legislature's stubborn refusal to fully fund Medicaid and participate fully in the AHA. That puts things more in perspective. For a good take on root causes of the rural health care crisis, you might want to check out this opinion piece in The New York Times.

In all of this the main take-away for me is that no matter how vigilant and how proactive I think I am about getting care, there will always be something beyond my control, some problem I don't foresee, some detail I miss, some larger incompetency or built-in bureaucratic maliciousness that can't be overcome no matter how persistent one might be. And that worries me, not so much for myself, but for those cancer patients who maybe don't have the wherewithal to navigate this labyrinth of a health care system in the first place and have no one else to advocate for them. I am pretty good at advocating for myself, and my care is still screwed up, just when I thought I was finally getting somewhere. Imagine someone who isn't literate, or who doesn't speak English as a first language, who doesn't have a public blog to air their griefs, who has a disability or is incapacitated in some way or who has no family support? So, overall, I am still a fortunate person who has found herself in temporarily unfortunate circumstances. There are worse things. 

I just hope I don't have to drink another one of those barium shakes any time soon.