Roadblocks

It has been nearly three months since I first shared my story. I really thought that post would be the difficult one, and it would get easier to share updates from that point on. However, I was kind of wrong. It turns out, sharing things that make you feel vulnerable doesn’t immediately get easier. I worry about hurting people’s feelings when I share how they have deeply hurt mine. I worry about not appearing like I can handle it all. The truth is, I can because I have to, but that doesn’t mean it is easy. And that doesn’t mean it doesn’t feel intensely lonely. If you saw me in person and asked how I was doing I would smile and say I’m fine. I don’t really love attention, it makes me uncomfortable and I have a tendency to be a mother hen – I’d much rather take care of someone else than ask for help. There have only been about three people in my life who have ever been able to see completely through that bullshit and push me to really talk; two of those people are no longer earthside. Life is just hard right now, folks. In every aspect, life is a challenge right now.

I originally started writing this post mid-May. I kept holding off in the hopes that I would have some definitive information to share this time around, but that just isn’t how things are working out right now. I have continued to write in the meantime. There are two sides to this blog: the private thoughts that I’m trying to process on my own, and the things I’m willing to share. They are essentially the same, although in the latter the sharp, jagged edges are smoothed down into something more palatable, more fit for public consumption – less raw, less angry, less scared. I thought about not sharing this post at all publicly, but that seems disingenuous to this story. I know I won’t always feel this way. In fact, it kind of ebbs and flows. I wrote this at a point where I felt positively stuck. I want to be able to look back on these first posts and remind myself just how far I’ve come when I’m on the other side of things. So for that reason, I’m sharing this as it was written – a little outdated, and necessary for no one but myself. In order to move forward, I’ve just got to go through it.

I’m tired. It’s been a long and trying year and I am exhausted. I am tired to my bones – physically, emotionally, mentally and spiritually. I have been fighting at every avenue – fighting for referrals, fighting to be seen by specialists who usually book out months in advance, fighting with insurance to justify having my stomach removed by specialists at Mayo with knowledge of the CDH1 mutation instead of a general surgeon here in Rapid City. The fact that this is even so difficult is completely ludicrous – as if someone would elect to have their entire stomach removed unnecessarily. Who is opting for this? Even people who have bariatric surgery for weight loss keep a portion of their stomach because, it turns out, it’s a pretty important organ. So WHY would I opt to remove it unless it would potentially try to kill me? I wouldn’t. NO ONE would.

As all of this is happening, I have crept towards nearly $10,000 in of out of pocket tests and scans and office appointments – the bills of which are all rolling in on a daily basis, and yet I STILL haven’t reached my insurer’s max, and am no closer to a surgery date than I was back in February. Tell me more about this wonderful and not at all broken health insurance system we have in the good ol’ U.S. of A. I’ll wait.

I consider myself to be a pretty unflappable. I can think of at least one ex who might argue that point, but whatever, he isn’t here so my assessment stands. However, one can only be chill for so long and in so many situations before you have had ENOUGH. And friends, I’ve had enough. I’ve had enough waiting around for answers, I’ve had enough bills and I’ve met my limit of patience to leave polite voicemails. I am feeling the most flappable.

This whole journey started almost six months ago. It has completely consumed my focus for the whole year thus far. My hope was that when I would be able to get the surgery scheduled, I could then begin to plan for life up to and after surgery. Am I looking forward to surgery? Not particularly, no. But I am also quite tired of living in limbo and with a constant hum of anxiety about the situation and all that it entails. Do you know what it feels like to live with a ticking time bomb inside your body? It’s distracting to say the least. It’s hard to focus and it’s definitely challenging to run a business. Even menial tasks like remembering to put gas in the car or take the right exit on the interstate escape me if I don’t make a real effort to focus. My entire brain is preoccupied with solving one problem and one problem only, and there is room for nothing else.

Last we chatted (or that I chatted at you, rather) I was getting ready for a second endoscopy, a procedure I was a little too confident about in hindsight. As it turns out, an endoscopy with 3 or so biopsies is no big deal, but an endoscopy with 65 biopsies is a very big deal. I was miserable for the next five days. It was uncomfortable to lay down, it was uncomfortable to sit. If I bent over, the pain was so sharp it would take my breath away. If I ate, I got nauseous, if I rolled over in bed I would wake myself up. I didn’t expect the second procedure to feel so drastically different from the first one. In and of itself, it really wasn’t that bad. Being uncomfortable for a few days isn’t the end of the world, but it threw me into a dark place that I wasn’t prepared for. Undoubtedly, surgery recover will be an entirely different beast, and I was already miserable. How was I going to do this by myself? How would I function after surgery at all? Those are not great thoughts to ponder ahead of a surgery that is going to happen no matter what. In hindsight, I can say that is when my energy and attitude took a severe dip that has been incredibly hard to escape from.

On the bright side, the biopsy results from the second endoscopy came back clear as well. This isn’t a guarantee that my stomach is cancer free, but it is a good sign. I felt good about finally being able to say I checked all of the boxes and jumped through all of the hoops my insurance company was requiring in order to be referred back to Mayo – I had seen a gastroenterologist and surgeon here in Rapid City, and both were in support of a referral back to Mayo. My GI doctor then began my second referral and told me he didn’t foresee any issues, but that he would do a peer-to-peer review if necessary. All good news. That is, of course, until it wasn’t.

My insurance company denied my referral in less than 24 hours of it being submitted. After the peer-to-peer review, they agreed that the surgery is medically necessary, but that there wasn’t enough justification to be referred out of network. The suggestion was that I go to Sioux Falls if I didn’t want to do the surgery in Rapid City. The wording in the form letter was exactly the same as my first denial all the way back in February, and stated there are gastroenterologists and surgeons in network, so I would need to see one of them. Despite being referred by in-network providers. What is the secret handshake already? It’s like Groundhog Day – a really expensive and painful Groundhog Day. The most infuriating part of this whole situation is not feeling like I have any say or control over my own destiny. It quite literally feels like some random person in a cubicle is playing god with my health. Seven different medical professionals have now all come to the same conclusion, and yet someone from a 1-800 number holds the keys to my care. Not the experts, but someone with some sort of checklist. It’s unbelievable.

So, that’s where we stand now too. I am in the midst of an external appeal process from the visit in February, and my hope is that if the board of insurers sees justification in that previous visit to Mayo, then I will have some leverage to get the surgery done there as well after a second external appeal.

It’s just so hard – in February, the surgeon at Mayo said I should have the surgery done in the next six months, so sometime before August. I was originally hoping for surgery in June. I feel like I’m running out of time. After doing a considerable amount of research online, the consensus seems to be that there are about five hospitals in the country that treat CDH1+ patients, and every single person says it isn’t worth the risk of being a guinea pig for a local hospital. That sounds harsh, but this is my life we are talking about here. So my options at this point are to acquiesce and have the surgery in Rapid, or to go to Mayo and incur tens of thousands of dollars more in medical debt. Those aren’t great options.

The pressure to try to manage all of this, while also being single and running a business has added an additional layer of stress that keeps me up at night. It’s sad to think that the thing I fear the most isn’t a life-changing surgery, but the worry of keeping income flowing throughout this process. There is no such thing as leave time, if I don’t work, I simply don’t get paid. I already feel like I’m behind, how on earth will I take six weeks off after surgery? How will I pay my bills? It isn’t as if there is someone else here to help pick up the slack. All of these thoughts snowball and overwhelm me. Sometimes, it quite literally feels like the weight of the world is on my shoulders.

If I’m being honest, my thoughts have been dark, sometimes desperate, and filled with heartache. I have never felt so lonely in my life. I am insanely stubborn and have a hard time asking for help. The few times I’ve tried to reach out to people close to me for support haven’t gone so great. One person told me this situation was too much to handle, and felt the need to remind me that this is life threatening and I could die (which takes the cake for the least supportive thing to say to someone). Some people have just disappeared without explanation, and some have just gone on as if nothing is wrong. Almost no one really checks on me or asks me how I’m doing or how I’m feeling. Of the three, those last two are the most hurtful. I think people assume that if I don’t bring anything up, I must be okay - I play the strong one very well.  I also think that being faced with mortality is hard, and most people aren’t willing to sit in that uncomfortable space. But here’s the thing: I’m not afraid of dying, and I’m not worried about dying either. The whole point of this surgery and the ones further down the road are to prevent me from making an early exit. The ability to do something about any of this is an incredible and powerful gift.

I hate to even give much energy to the fact that I’ve felt so hurt by some people in this process, because I have a handful of friends who have made it their mission to call and text on an almost daily basis. They make me belly laugh and take my mind off of everything for a while, or check in and just say “what can I do?” or simply acknowledge “hey, this whole thing really sucks right now”. But even with them, I feel so absolutely and completely alone. It is a deep feeling that I cannot shake.

I wish I had a more uplifting note to close on, but that just isn’t how things are right now. I know these feelings are temporary, and reminding myself of that has helped.  I know I won’t always feel this way.