Friday, July 1, 2016

Free At Last?

I often start these blogs with a reference back to a memory if for no other reason than to test if that part of the brain has improved any. But not too long ago, a brain tumor survivor friend of mine, Matt Cotcher, had a Facebook post that said something alone the lines of "X number of years ago they said to me if the brain tumor doesn't kill you, the medical bills will. They were wrong on both accounts." I found it rather moving, inspirational even because I'd been bogged down with cancer and the financial mess that came from it all for the last few years. I'd tried to dismiss the frustration when it all seemed too overwhelming simply by quoting  my grandfather, "If it's about money, don't worry about it, we don't have any." But I had a slightly unexpected surprise this week regarding money that I can't help but share (with that said, I know money's a touchy subject so if you're one of the people whose sensitive about that conversation, the right time to stop reading is now).

There were some financial realities between Kiana's mother and I that got settled earlier last month. So shy of child support, there were no financial things left there. I hate owing money so anytime I do I try to spend any money to it so any extra money that has come my way I have just paid it to anything and everything I owed from the mess of the last few years. The goal and therefore expectation that it would all be settled by August 1st of this year. I found out I had cancer a few months after I had turned 30 and I was daring to dream that I could knock out all debt before I turned 36 on 8/8/16. But on Monday night I got home saying that it was all paid and no further payments were necessary and that in fact I would be getting back a slight refund soon (if you have a regular standing job, odds are you made more money today than that refund).

To say I was floored is an understatement, even if it was a couple of months early by one account, it
was a lot earlier by some other accounts that I had envisioned a few years ago. I couldn't believe it. In the age of oversharing I put it on social media with something not quite as eloquent as Matt but that I was glad to still be standing with no outstanding debt. I'd love to tell you I got a good night's rest but I was just too overcome with whether or not this was real that it took me a while. In fact I dreamt that night about how I finally slept in and woke up at 9:30 AM, then I actually woke up and it was 4:45 AM. Dreams are so much better than reality somedays.

But not that day, that day the reality that I didn't owe anyone money was better than any financial dream I'd had for quite a while. It was better than any birthday present I could have ever received and certainly better than any I should have given. It was odd and perfect timing in many ways. I had actually been interviewed for a podcast the Friday before about the National Cancer Moonshot Initiative. There was the head of Seton's Neuro oncology program, The Policy Director for Livestrong, and me. Two out of 3 working brains ain't bad and I wish more of my interviews were for the radio because this face was built for radio. One of the things in both the formal podcast but in more detail in a lengthier conversation was that was the struggle in cancer research now. There are some more personalized treatments but some of those can cost over $100k a year and are literally meant to only help one person... If that's where the brightest brains go then those people with less options may never get proper care.

The doctor was from Seton which is where I went for all my local things. I joked to him about how every time I see a Seton advertisement I say, "Oh I paid for that." I repeated a joke about how someone said that when someone gives that much money to something they usually get something named after them (we'll let go that's usually when it's a donation not a bill but whatever). He reminded me how lucky I was to get to go to Duke and that I had the resources to do so. We talked about his predecessor, Dr. Brian Vailiant, who along with me has now moved on to Austin Cancer Center. He had clearly talked to him before and he spoke of the difficulty of balancing the dance between being competitors in collaborations in the world of cancer treatment.

But I was impressed with that he was talking about the science but also expressing concern about the less fortunate being able to pay for it. It came as no surprise after him sharing that that he had made it a goal to help with one of Mother Teresa's clinics and had gotten to meet her and how glad he was she was about to become formally a saint. I'm not Catholic but knowing both of their approach to those people with unfortunate lives and illnesses, it made me think that I'm blessed to be traveling in the footsteps of those who have gone before and that the saints are still marching in to be helpful.

The policy director pointed out that the biggest reason people reach out to Livestrong is trying to figure out how to deal with the finances of a cancer diagnosis. It may be fair to say that too much of modern society doesn't deal with their finances properly but the biggest cause of bankruptcy in the USA is medical issues and the two most profitable industries are healthcare and insurance. If anyone thinks that's a coincidence...

The Livestrong leaders were in town for a conference that hadn't happened since I had closed their final session. I am not nor have I ever been a formal leader but I made sure to get a chance to hang out with most of them each day. They were once again being encouraged, taught, re-taught why
dealing with other aspects of cancer matter now. I loved what one one of them said that they hope Livestrong becomes the 911 of cancer. 911 connects you to the right people, there's a reason that band is constantly on my wrist.

We'd have lunch after it was all over with a few of them and we talked about finances. I know it's a touchy subject but when you're dealing with people who you've been there for each other to talk about pretty invasive medical procedures and cancer has robbed you of too many friends far too quickly, money is less sensitive. They asked about how I pay the bills and it's a complex formula (if you want to trade taxes anytime let me know). I mean there are times that I've gotten paid to talk about my hobby of running a day or two before doing that. I know that's normal for many people but I still haven't quite understood it.

But we also talked about how the bills racked up. I discussed with them some of the comments on that Facebook post about the bills being paid off. There were things like the fact that there were 5 different events in 3 different cities to help when this all started (I've volunteered for all of the organizations before or after it happened trying to raise thousands of dollars but is there anyway to pay back someone saving my life).   Someone had asked for me to give them financial tips (hey be unfortunate enough to get cancer and then be fortunate enough to win a marathon pushing a stroller doesn't seem like sound financial advice to me) so I'm not sure I'm very useful in that area.

Speaking of salvation, there were many Facebook comments about thanking God. If you read this blog, you know I've never once prayed to beat cancer nor its bills. I didn't quite know what to do with those and while I have faith that there is a God I don't quite know how the balance of the universe all works out so I've never been ready to say that God is the one that's gotten me this far because I can't counter balance that with the people who I've seen go far too early. Nonetheless, I am thankful to the rules and Ruler of the Universe and people in the biggest proportion I can possibly imagine.

I told them the stories actually about how it was to go from underinsured to uninsured when I lost my job to uninsurable (whatever you think of Obamacare, in Texas I couldn't get health insurance with a preexisting condition). I told them stories that show my stubbornness or stupidity or fortitude depending on how you want to spin it. There was one of my doctors who said his institution let him write off certain patients and that I could be one of them. Speaking of money being sensitive, I told him if he ever offered that again, he'd be fired as my doctor. He never brought it up again. I shared with them about the fact that while I was uninsured a place sent me 5 bills for similar appointments none of which matched each other nor were none knowable in advance. I finally sent a strongly worded letter talking about how horrible this was period. I don't know if it was that letter or the fact that I was in one of their advertisements that made it from that point forward I knew what the appointment would cost before hand. I told them about how the place that I had gone to for quite a while for my MRI's literally made more money from me after I got uninsured because the rate the insurance negotiated to was cheaper than the one they billed uninsured patients even if they paid it all upfront. My mom recently had an MRI for an injury and she was blown away by a bill which I get regularly and I joked with her that did you think there was nothing new at the house because I was bored? If you think wedding, race or senior pictures are expensive try ones of your brain.

There were some good jokes about how I should get massively into debt with a business so I could do it again. I joked with a friend about how I no longer needed a sugar mama and he said whoa whoa, you still need one of those and get me one too. There were questions of what I would do with all this extra money. If you want a short answer, almost everything in my house is actually older than Kiana (so over a decade) except for the things in her room. I've actually made a list of things to get done on or in my house for the first time in years because I honestly would have bet you I wouldn't be here today nor that I'd even have the possibility of buying them. It'll be years before it arrives; I'm not going to go finance anything but I dare dream about more than just sleeping in.

But I'm also committed to continuing to help be a fun and fundraiser. In fact this year will be the first time ever that Kiana gets to participate in both events of the BrainPower 5k and the Livestrong Challenge. So if you're reading this and feeling generous, you can donate $5 to her 5th 5k this year. Or she's also getting ready for her first bike ride with Livestrong (on that list of things to replace at the very top is getting her a new bike). It's the 20th anniversary and she's going to ride 20 miles so if you're feeling more like donating $20. Either way, let me put it simply in either one, you'll be helping people who need money more than I do.

Still through it all, I kept thinking of the trail race that I went to do shortly after the last blog. It didn't go great; in fact I had an ankle issue about half a mile into it but I'd do 18 more. The pain wasn't pleasant but quitting wasn't an option. I've long said that running is my therapy and how much I run and how long I run tells you how much I need therapy. Perhaps it's appropriate than that the very last race I would do before getting out of debt was this one. You see it exposed my weakness, I'm not a great technical runner and I don't have spatial orientation and I had to do it with an early injury. Perhaps even more appropriate was the race director himself is a therapist and this night time 30k was the hardest trail race I've ever done but like all good therapy I think my heart and head were better for it. I took a tough fall at miles 12 and 14 and walked some due to the pain after those but I turned it back on the last couple of miles, helped by a friend who was doing the 60k. But it also helped that the playlist which I had made almost all about light and night that a song which I repeated a couple of times came on to deal with the pain in the middle of crossing a pond and some water crossings. It was a gorgeous night and while it was only in short glances I'd take in some of the constellations that were gorgeous. I'd keep checking them out as I waited for some friends to finish.

Take that money
Watch it burn
Sink in the river
The lessons I've learned
Everything that kills me, makes feel alive...
Lately, I've been, I've been losing sleep
Dreaming about the things that we could be
But baby, I've been, I've been praying hard
Said no more counting dollars
We'll be counting stars
I'd used it before but it never felt more appropriate than during the race until a couple of days later when that letter came in. Then the next day a friend invited me to do the hardest trail run I've ever done. It whooped me and the workout also didn't go that well but I'm already signed up do it again next week. 
Today as the 4th of July weekend opens up I got the reimbursement check. It's tempting to frame it but I'm not quite that sentimental. But that night trail race had a logo of those who don't take a chance won't get a chance and I took the sticker from it and put it on my water bottle which during Texas summer gets plenty of use. I'm glad some of the past, at least financially is, past but the chase for freedom was never supposed to be a walk in the park right?  I'm going to keep taking chances.