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 So for that reason, I’m sharing this as it was written – a little outdated, and necessary for no one but myself.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.

My Mother’s Daughter

It’s 10 a.m. on the morning of January 28th and I am elbow deep in the dryer when the phone rings. I have been anxiously awaiting this phone call since Friday afternoon – an entire weekend consumed with wondering why the genetic counselor wanted to set up a follow-up call with me. I’ve spent the morning busying myself with household tasks – I scrubbed the inside of the microwave and refrigerator, I did laundry, straightened the bathroom closet – whatever busywork kept me from sitting still and kept my mind occupied.

I was pretty sure I wasn’t receiving good news, or I would just be getting results in a letter from my doctor, yet I received a phone call late Friday afternoon to schedule a consultation with the genetic counselor I had worked with a few weeks prior. When I mentioned this to the scheduler, she replied that I would also, in fact, be receiving a consult from my doctor as well. Great. Nope, this can’t be good news.

After I hung up the phone, I thought to myself that there wasn’t much point in worrying about it over the weekend. This was a genetic test, so there was quite literally nothing I could do to change the results, and nothing I could have done to prevent what the results would tell me. So, I spent the weekend with friends, out of the house and away from my own thoughts as much as possible. I told almost no one about the test results I would be receiving.

Before I get back to that phone call, I have to back up a bit further to share some context about how I got to this point in the first place. Six or so weeks prior, I had gone in for a routine annual exam. There was nothing out of the ordinary with this particular appointment, but my gynecologist’s office had just begun a new cancer prescreening process that week. There was a new form requesting some additional family history that would help the physicians determine a recommendation for additional genetic testing - particularly for BRCA1 and BRCA2 – the genetic mutations most commonly linked to ovarian and breast cancers.

Given the fact that my grandmother’s cancer was so advanced and aggressive by the time it was discovered (which is similar to how ovarian cancer behaves), my doctor thought it would be worthwhile to go ahead and pursue the genetic test to know for sure. I asked what the recommendation would be if the test was to come back positive for either BRCA mutation and she told me that she would recommend a double mastectomy and oophorectomy as soon as I knew I was done having children. I was dumbfounded. I was expecting something along the lines of additional yearly screenings, maybe some ultrasounds. I wasn’t prepared for any of this information – I was here for a completely routine exam and now suddenly I’m thinking about what would happen if I had to be on hormone therapy the rest of my life because I no longer had ovaries.

A nurse came in and did bloodwork and I had a 15-minute phone consult with Myriad (the lab that would be performing my test) and that was it. I was out the door wondering what the hell just happened. I sat in my car for a minute to pull myself together and decided that I wasn’t going to drive myself crazy worrying about this. If I had a genetic issue, there was quite literally nothing I could do to change it, so there was no sense in fretting for weeks on end as I waited. I skated through the last few weeks of the year not thinking about it at all.

After the beginning of the year, I had another, more in-depth phone interview with my genetic counselor at Myriad. We reviewed the comprehensive family history I submitted and she suggested a full panel of tests rather than just BRCA1 and BRCA2 since there were so many unknowns. I do not know my biological father’s family history at all, and amazingly, we never knew my mom’s father’s family history either. This effectively left me with 1/4 of the knowledge most people have of their health – not the clearest of pictures.

Fast-forward back to that 10 a.m. phone call on January 28th. I hadn’t expected to speak to the counselor again and had spent the weekend prepping for her to tell me that I had tested positive for one of the BRCA mutations; I was braced for it.

“I have good news, you tested negative for both BRCA1 and BRCA2, but we did find something else.”

I was so relieved that the “something else” didn’t even register right away, I figured nothing else could be quite as bad.

“You tested positive for the CDH1 mutation which involves a condition called Hereditary Diffuse Gastric Cancer (HDGC) syndrome.”

Wait…what? Gastric cancer? That wasn’t even on my radar. Even though my mom died of gastric cancer at the end of 2015, it had never been a concern of mine. Every doctor we met with said the same thing about mom’s cancer. This type of cancer is rare, it’s most common in Southeast Asian countries where people eat fish high in mercury, and typically presents itself much later in life. Basically, it was an anomaly, a total fluke. There was a glitch in her system, and it wasn’t anything we should be worried about. I carried that false confidence with me for three blissfully ignorant years.

Diffuse gastric cancer is particularly hard to detect at early stages because it doesn’t form a distinct mass, rendering endoscopic screenings pretty ineffective. Most people with diffuse gastric cancer aren’t diagnosed until tumors have also metastasized elsewhere, or until they start experiencing discomfort. At that point, it is too little too late. Of course, we now know that was what took my mom’s life. Her doctors were right, it is an extremely rare cancer…unless you have this genetic mutation, which then basically guarantees it.

Diffuse gastric cancer is extremely rare, occurring in 0.6 percent of the general population. However, a diagnosis of hereditary diffuse gastric cancer syndrome increases that risk to 83 percent. The average age of onset is about 38 years old, with a 4 percent survival rate and an average life span of 2 years from diagnosis. Most people with HDGC are gone by the time they are 40 years old, some much sooner. This did make Mom’s case an anomaly in the sense that her onset was much later in life, being diagnosed just shy of her 54th birthday.

The recommendation for treatment of HDGC is pretty to the point – a total gastrectomy. The complete removal of my stomach before a cell decides to flip a cancer switch is the only real prevention. However, the plus side of that equation is that if my stomach is removed in time, it completely eliminates my risk of HDGC-related cancer.

Not to be completely outdone, the news kept coming. A CDH1 mutation also increases my risk of lobular breast cancer (again, a rarer and more difficult to detect form) to 52 percent. Lobular breast cancer is cancer of the glands, rather than the more common cancer of the ducts and therefore occurs deeper in the tissue and is less likely to form a distinct lump. Ultimately, that could mean a double mastectomy may still be in my future. For right now, I will have an annual 3D mammogram and MRI as well as two clinical exams in-between, meaning I will be examined closely (and quarterly) for changes. The issues with my stomach are much more emergent (as I would quickly find out) so the decision of a mastectomy and reconstruction are on the back burner for now.

This is already extremely long, so I am trying to share the shortest version of these diagnoses as possible, bear with me here.

What has happened from that point on has been a complete whirlwind. After a consult with my doctor, both she and the genetic counselor referred me to the Mayo Clinic in Rochester, MN. From the point of my referral to my appointments at Mayo was exactly two weeks. Anyone who has needed to set up an appointment with a specialist understands how shocking that quick of a timeline was. Their sense of urgency reiterated to me that this wasn’t really something to be taken lightly. Honestly, I was terrified that they were going to tell me I had to have surgery immediately and I would have no time to get my clients and business in order. Everything was happening so fast, I found it hard to breathe. I was completely overwhelmed and still in total shock.

Then, the insurance issues. Ah, insurance…I hesitate even getting started on this topic because it is so disheartening. My insurance denied my referral to Mayo, so my doctor appealed. They stated that I needed to see a gastroenterologist in Rapid City, yet no one could see me until mid-April, so she then got a GI doctor to write a letter on my behalf – denied again. We were so sure that the letter from a GI doctor in Rapid City would fulfill the requirements, that I was already IN Rochester at my appointments when I found out about the second denial. Thankfully, I found out in time to reschedule all of the tests and procedures, which would have consequently all been denied as well, to be done in Rapid City to send back to Mayo for review.

While at Mayo, I met with a gastroenterologist, a surgeon and a high-risk breast health specialist that all have experience working with CDH1+ cases. It’s amazing to have such specialized care within driving distance, and it’s disheartening that it has been so difficult for me to convince my insurance company that these specialists are necessary.

The consensus remained the same, with a priority on a total gastrectomy sometime soon – the surgeon recommended within six months, the GI doctor thought I may be able to wait until the end of the year if I had anything pressing to do beforehand. Although the recommendations were the same, their perspectives on recovery were completely different. One doctor said that life would eventually be back to normal, while the other reiterated over and over about how significant of a life change this would be.

While at Mayo, I was scheduled to have a CT scan, endoscopy and mammogram, all of which had to be rescheduled when I got back home. In the past couple of months, I have met with a GI doctor and surgeon here in Rapid City, I have had a mammogram (which came back clear!), a CT scan (which came back clear!), a colonoscopy and an endoscopy. I am scheduled for a second endoscopy with additional biopsies tomorrow, fittingly, on Mom’s birthday. My local GI doctor (who coincidentally did his residency under my Mayo GI doctor) is in agreement that this is really a case for Mayo with follow-up care locally, so he is once again beginning that referral process for me.

As of right now, all signs point to go. It is crazy to think that I need everything to come back completely normal in order to remove my healthy stomach. Best case scenario is that everything is clear so I can proceed with surgery. There are a shocking amount of instances where a patient’s endoscopic biopsies came back completely clear and yet the pathology on their stomach after removal already showed aggressive spots of cancer growing. That all being said, I’m not sure I will feel relieved by any of the results until after surgery and a final all clear on the pathology. It’s quite literally like living with a ticking time bomb inside my body.

This whole experience has been a complete roller coaster. It has been overwhelming at times, and I have shed many, many, many tears. Yet, I can’t help but feel grateful and extremely lucky. Am I upset that Mom’s doctors didn’t catch the hereditary component of her cancer? Yes. Do I wish we knew in time to save her life? More than you could comprehend. But, I get the opportunity to do something about my fate with this diagnosis. I get to live. Life will be different than I had planned it in many ways, but I get to live it. And the number of stars that had to align for me to get this information is simply astounding. Because it is so rare, most people don’t even get tested for the CDH1 mutation until multiple people in their families have died of stomach cancer – that’s usually what clues doctors into the hereditary component. So the fact that I have only one known relative that has been affected by this and yet somehow ended up with these results is amazing. It shocked all three doctors at Mayo that I came across this diagnosis by sheer coincidence.

What if I had scheduled my annual physical a month earlier? Hell, even a week earlier? I would’ve missed the prescreening that got this ball rolling for an entire year, pushing me even closer to that average age of onset. What if I knew my biological father’s family and was confident that I didn’t need that full panel? The “what ifs” remind me that there is a reason this is being brought to my attention right now and that I need to honor that and surrender to this process. This knowledge is a privilege.

As of right now, I imagine I will be set to have surgery in about two months. In the meantime, I am eating and drinking all of the things and I’ve packed on about 15 pounds so far this year as a result. My pants don’t fit, but I don’t care. Soon they won’t be too tight, but too big – everything is temporary. I’ve eaten mostly paleo for the past three years, but now? Now, I’m eating bread and cheese and ice cream and chocolate with abandon. I’m drinking prosecco and beer as much as I can because I don’t know if I will be able to handle carbonation later. I am eating steak because it’s tough to digest and might become impossible (and I’m from South Dakota so, of course, it is my favorite). I’m taking it all in and putting this stomach to use while I still have it. Nothing else has made me more acutely aware of the fact that things like tight pants don’t really matter much.