Always Look at the Bright Side of Life (Even if You Have to Claw Your Bloody Fingers up to Windowsill to see the Sun)

Because that’s what I feel like I’ve been doing for  a couple of months. Until now, it’s been pretty easy to maintain a Cup is Half-Full, Silver Lining kind of mindset. Lately, some days, sometimes some days in a row, sometimes a good number of days in a row, it is a struggle. It’s not despair or sadness or Why Me. I’m pissed off and I’m weary, as the hits keep coming. Even I, the eternal potentially infuriating optimist, can hit the wall.  This is demanding a change in me. So far, I have been moderately successful at implementing the change, but sometimes, it’s two steps back. Which actually is the change I am trying to adopt. Step back. I have always hurled myself at whatever lies ahead. I am finding lately that there’s too much momentum in the hurling, and to protect my energy source and to not become the bug on the windshield or that person you can depend on to be outraged about anything and everything, I am working harder on stepping back. This as I field fastballs that are putting my new mantra to the test.

A couple of weeks ago, my mom was diagnosed with breast cancer. She has asked me not to give too many details, so I’ll just say that she most likely won’t have to get chemo. There is so much cancer in our family that this diagnosis among any of us shouldn’t be a big surprise. It wasn’t for me 17 years ago, when I got my breast cancer diagnosis. You know my MO: Attack, ask questions, push for options, research, ask more questions, become good friends with Google. That’s not my mom.  On top of reasonable fear and some decision-making paralysis, since she hasn’t been in this arena since 2001 like I have, she is more of a receiver than a passer. She waits to hear from doctors, rather than calling them repeatedly. During her diagnosis and ensuing doctors’ appointments, our very different approaches to her cancer diagnosis has caused a pretty good amount of stress and frustration for me, even though it is not mine. Finally one night, I had to let it go and allow that she is picking her own way to fight the beast. I don’t have the strength to fight for two and do a good job for either of us. I told her that with all the upheaval and energy and life-sucking events that are going on in my life right now, I have to step back. She has good doctors, and like I told her, she can educate herself with knowledge, turning the darkness of fear into light. She says she’s good with all that. It’s a good refresher lesson for me, one that I learned climbing Mount Kilimanjaro, that admitting you have to step back, admitting you can’t do it alone, is not a sign of weakness, but one of strength.

Underlying that, we are appealing my insurance denial for the proton therapy for a third time. In the last denial, the reviewing “expert” presented untrue statements as fact, saying I refuse to take chemo (my last trial WAS a chemo drug), and there are no big studies on protons and thymic cancer (then he goes on to cite just such a study co-authored by MY proton therapy doc). He also said there’s no reasonable likelihood that it would work (then, it did).  My head has been on the verge of exploding for weeks as I gathered documents to refute this and ask for a reversal. I am mostly still on this warpath for the principle of it. I know that many people don’t have the resources to continue this fight, so they’ll either skip treatment that could make them feel better for the fight, or they’ll get the treatment that will cause more collateral damage because a doctor who’s not their doctor said it’s the one. Reviewers and insurance companies don’t know who they’re saying NO to, so this case hopefully will make them be a little more thoughtful. Or not. But I’m trying.

Incredibly, that’s not my biggest insurance woe right now. I am trying to get Everolimus (Afinitor) off-label. Thanks to Dr Rajan, Everolimus is listed as a second line of treatment for people with thymic carcinoma in the National Comprehensive Cancer Network, or NCCN. This is a daily oral targeted drug that I can get in Salt Lake City, meaning much more limited medical travel for me. My Huntsman nurse called me all excited on Thursday night saying that my insurance company had approved it. I couldn’t believe I was getting good news (even though it makes total sense, with the NCCN approval.) My nurse didn’t know what the co-pay was or if there was one. But Novartis, the drug maker, has a program that covers super high co-pays. Everolimus costs $32,000 for a 28-day supply, which is the subject of a future post. Huntsman had forwarded all my documents to CVS Specialty Pharmacy. I was to call just to gently prod them along on Friday. But when I called Friday, CVS said my claim had been rejected that morning. The nice agent put it through again, thinking that maybe it had been too soon the first time. Another rejection. The irony here is that when the insurance company sets the co-pay, Novartis’ financial assist program can go into play. A flat-out rejection means they can’t even help. At this point, this is not about money, this is about access. Until the insurance company, Novartis, Huntsman, and I come to some kind of detente no matter what it is, I don’t get the drug. And, as always, this is on the Friday of a 3-day weekend, so I am hamstrung to do anything for three days. I am hoping it is just a bureaucratic miscommunication between insurance, Huntsman, and CVS, because this time, the stakes are high.

I’ve now been without a systemic cancer treatment for seven weeks. Even with a slow-growing cancer, that’s a long time. It may be my imagination, but despite the assist from the proton therapy, I am starting to feel less than fine. It’s challenging to breathe and walk sometimes. Once again, I am having to consider self-pay until the parties get this straightened out or I have to work toward getting a compassionate use waiver from Novartis. The problem with that is that can take a month, with the FDA approval, and I don’t think I can wait a month.

I am weary.

My fingers are bloody.

I’m tired of fighting every fucking day. I don’t need encouragement or sympathy: I am my own best cheerleader. But I want others who are in and around the fight to realize that even the strongest among us need a rest. Or a break. I’ll take either. This rough patch has made me realize that you CAN’T fight every single day, and you don’t have to. I’ve stepped back to a lighter schedule for my beloved Deer Valley job. I’ve taken myself off the red carpets for Sundance for Park City TV (I know that brings dismay to some of you.. But I’m still cohosting the 2-hour morning Sundance show).In yoga, the final pose is called savasana (corpse pose, which exactly the opposite of what it’s supposed to achieve. Go figure.). It’s a lying down pose where you absorb and appreciate all the work you’ve done for the last hour or 90 minutes or whatever. It’s the time when you recharge mentally, emotionally, and physically. This holiday weekend is a forced savasana for me. I’ve seen a few movies (potential Oscar nominees, it’s that time again!), organized for Sundance which starts Thursday, and regrouped with friends since I’m actually here for longer than a week. I’m not so good at stepping back, but I am working hard on it (which probably doesn’t make sense on the face of it).

 

 

 

 

 

 

 

 

 

 

 

And tomorrow, I fight. #defy

 

 

***** LATE UPDATE

This morning, I got an override for the targeted drug, Everolimus!!! I should be on the new program by the end of the week. Things are looking up! #defy