Recovery

Our last outing with Mom, back in 2015.

Today would’ve been my mom’s 60th birthday. I’ve spent the week trying to figure out how to commemorate this occasion. What would we be doing if she was still here? Maybe we would’ve taken a girls trip, or thrown a big party. Or maybe she would’ve insisted on no-fuss and we would’ve just gone out for Chinese like most other years. I am really not sure. But 60 years old, on a Saturday no less! I have a feeling we would’ve insisted on something a bit more special.

I started this blog on Mom’s birthday back in 2019. It had been a few months since my diagnosis and I was finally feeling ready to share what was happening. I choose her birthday for my first post because my journey and hers have been so completely intertwined. My story is just as much hers, and hers mine. That’s kind of how it’s always been between us. My relationship with my mom was complicated and beautiful and tricky to untangle.

It seems fitting to close this chapter on her birthday too. I am ready to move on to other things. I’m ready to write about other things. I have been writing about other things, but I just haven’t started sharing them yet, because this hasn’t been wrapped up in a bow. That’s a little bit silly and a self-imposed rule, but here we are.

When I created this blog, I made sure not to name it anything related to being stomachless, because I didn’t want to be completely restricted or identified by it. Being stomachless is a part of who I am, but over the expanse of my life, I hope it becomes a small part of my story in the scheme of things. So after this post, things will shift a bit over here. I’ll still talk about CDH1 and being stomachless, and when the time comes that I decide I am ready for the double mastectomy, I’ll talk about that too, but in the meantime, I’m ready to expand. I don’t really know what that means or looks like just yet, but we will find out together.

Last I left you, my dad flew back out to Bethesda to fly home with me. The flights were uncomfortable and long, but I was so ready to be back home. We got home late after about a 12-hour travel day, and I stayed at my dad’s house for the night. I was pretty insistent on going back to my own house right away the next day – I was just ready to be in my own space and my own bed, so he took me home. That proved to be a pretty bad idea, and only lasted a few days. I ended up needing to stay at my dad’s house for about two and a half weeks, effectively kicking my stepbrother out of his own bedroom. I severely underestimated how sick I was, how weak I was, and how hard this was going to become mentally.

You would think the hard part would have been being in the hospital for a month. Undergoing multiple procedures, and getting poked at daily. But that wasn’t the case. In the hospital, my only real focus was just to get through the next thing. Get through the next round of laps, get through the next round of x-rays, choke down an ounce or two of the next protein shake – you get the point. Not to mention, narcotics numb you out to most things, and I had been on a LOT of those, so my brain was finally clearing up for the first time since before surgery. The reality of everything was hitting me all at once. I felt like a completely different person. Every time I saw someone for the first time, I would burst into tears, because I felt so different from the person they knew. And I looked different too. Not in the way that I look different now – I looked sick. My face was sunken in and gaunt and my skin was gray. I could see the fear on the faces of the people who loved me, and it was hard to deal with.

I was constantly shaky and dizzy, in part because my body needed nutrients and oxygen, and I wasn’t giving it much of either. I was still having such a hard time breathing, which created a whole host of new problems. Walking around the grocery store made my heart beat so hard I felt like I would pass out. Taking a shower was much of the same, I would race through it as quickly as possible so I could get out and sit down. It also lead to a small panic attack, because it was hard for me to not accidentally make myself hyperventilate. After a month, my body had gotten pretty used to not eating actual food, so reintroducing it was a struggle too. I was constantly nauseous – the smell of any and everything food-related made me sick. I made more than one call to my dietician asking her what to do because I couldn’t get or keep anything down. Her suggestion was to count bites, “tell yourself you have to take four bites and you can be done for two more hours” and that was literally how I got through it.

I couldn’t sleep more than an hour or two a day in those first couple of months back home. No matter what I tried, I just couldn’t stay asleep. I couldn’t sleep during the day or at night. I watched a lot of TV in the middle of the night and tried not to panic when everything else in the world was too quiet and gave me too much time to think. And the pain…good lord. I still had some soreness in my abdomen from my actual surgery. Mostly, everything just felt pulled tight and it was hard to stand up straight or get out of an overly-soft chair. But the pain from my lung and drainage tube areas was something else. It made everything difficult. Nothing really touched the pain, so I eventually stopped taking anything for it. I had decided I’d rather not be foggy AND in pain. So, in short, December 2019 sucked. Nothing prepared me for how hard this would be. Even though I did everything I could to prep, even though my clinical team was very realistic about what to expect; I still wasn’t prepared. You just can’t be until you are in it.

January was much of the same. I gradually started being able to sleep in longer stretches. Two hours, two and a half, three. I remember the first day I slept for a four-hour stretch – I was so excited I called people­ just to tell them. Take the little victories where you can, right? I was adjusting, slowly but surely. At this point, food still tasted pretty terrible and nothing sounded good, but I was getting into a better routine about making myself eat. The biggest problem that reared its head in January was the beginning of my bile reflux. My throat constantly burned and I started throwing up, both bile and food that couldn’t pass through it in my esophagus, on a regular basis. I remembered thinking that once I didn’t have a stomach, I wouldn’t have to worry about throwing up anymore (some people really don’t) but that hasn’t proven to be the case for me. I threw up all the time. I still do, almost a year and a half later. Some weeks it doesn’t happen at all, and some days it happens multiple times. There is no method to this madness. But in the beginning, it was much more frequent. Even though I slept (and still sleep) propped up at an angle I began to wake up choking and aspirating bile in the middle of the night. I don’t know how to explain how awful this is, but just know I wouldn’t wish it on anyone. It’s scary, and it hurts, and it comes with zero warning. Zero stars. Do not recommend. My clinical team had me trying several tricks and some over-the-counter medications to calm down the reflux, and even though nothing was really clearing it up completely, I had hope that it would be a temporary setback. (Spoiler alert: it wasn’t. I have bile reflux right now as I’m typing this).  

In addition to my reflux, my hair started falling out by the handfuls at the end of January. I knew that I would lose some hair temporarily – it’s a pretty common side effect of any gastric surgery. I just wasn’t prepared for how much hair I would lose, or how hard it would be. I just so desperately wanted something to be normal and it felt like more and more pieces of me kept getting take away. It was in piles and clumps everywhere – my bed, the floor, the shower walls, in brushes. It was everywhere but on my head. There were many nights I would be throwing up bile at 3 a.m. and I would realize that I had a palmful of fallen hair, after holding it back to keep it out of my face and the toilet. I would sit on my bathroom floor by myself and cry out of exhaustion and frustration. My hair fell out aggressively for about three months, and then by the beginning of May, it began to calm down and, eventually, regrow. But in the meantime, I had lost about 2/3 of my very thick hair and had two genuine bald spots and an extra-wide part by the time it was all said and done. I ended up chopping my hair off and going blond in an effort to hide how thin it had gotten.

Pretending that I wasn’t totally sick all day to rally for a night out with friends.

By the end of January, I was tired of feeling like shit. Or I was at least tired of sitting at home and feeling like shit. I was ready to start venturing out into the world again. My first real outing was to a friend’s birthday dinner and then, the next weekend, we went to a beer festival. I ended up throwing up at the restaurant during the dinner and was sick as a dog the entire day before the beer festival, but I refused to cancel my plans. If I wasn’t going to feel good, I was just going to go ahead and live life anyway.

At the end of February, I headed back to NIH for my 3-month post-op visit and got all positive news. My labs looked good, my scans looked good, everything was healing as Dr. Davis had hoped and expected. He assured me that I would start feeling better and better, and prescribed me a new med to try for the reflux. Just simply getting that news reenergized me. I had started easing my way back into work earlier in the month, and life was starting to feel closer to normal, or at least like a new version of normal.

By the beginning of March, I was feeling so much better. I still had reflux, nothing was touching that, but I was sleeping all the way through the night and able to eat more. Food still tasted terrible, and I pretty much lived off of cheese and crackers, but my body was adjusting and I was feeling less exhausted. I decided to jump back into dating again and managed to go on three dates in one week. I was on a roll! Life felt livable! And then just as I decided I was ready to rejoin the world, the world shut down. Proof that you can only plan so much, but some things are beyond your control. I holed up in my house just like everyone else. Work projects got canceled, all of my follow-up appointments got switched to telehealth, and I didn’t see any family or friends for two months. My lung complication after surgery was not yet completely healed and the combination of that and my bile reflux already left me at risk for pneumonia. COVID-19 felt like a risk I didn’t want to take just as I started to feel better. I finally saw a few of my family members on Mother’s Day in May, and a small group of friends on occasion throughout the summer, but otherwise, I spent most of my time at home alone. It felt like I had been in quarantine since November.

Prepping for my CT scan at my 3-month follow-up visit to NIH.

Over the next several months, I got into a regular routine, I was still pretty tired most of the time, and my reflux never really went away so I was always uncomfortable and had a hard time getting food down. I assumed this was just the “new normal” that I had been told about, and that I would just always feel about 80 percent like my old self. Still, by summertime, I felt miles away from how awful I felt in December, so it still felt like great progress.

The official post-hair loss chop in May.

However, by September, things took a turn and the reflux that had been an annoying inconvenience became nearly unbearable. It became so much worse, and none of my over-the-counter or prescription tricks seemed to cut it anymore. I ended up losing nine pounds in September, which was way too much by that stage of the game. I was having esophageal spasms, throwing up constantly, and just generally felt miserable. It wasn’t until a FaceTime call with a fellow stomachless friend about a month later that I even realized what I was dealing with was bile reflux – I’d gotten so used to it that it didn’t even occur to me that it had intensified that much. Thankfully, and unfortunately, she had struggled with bile reflux for most of her recovery too, and knew that Dr. Davis and his team had found a new med that had made a world of difference for her. I was on the phone with the dietician the next day to explain my rapid weight loss and to ask for the cholestyramine that my friend had mentioned she had been prescribed. The team met to discuss my issues and NIH overnighted me the prescription (have I mentioned yet how amazing it is to be a patient at NIH?).

That’s when things really, finally, began to change. I took cholestyramine (actually a medication for cholesterol) daily to help flush the bile from my system, and within about a week I was eating double the food I had been able to for the past 11 months. I started having fewer esophageal spasms and was therefore also throwing up less. My weight loss slowed dramatically from an average of five pounds a month to a much more manageable one to two. I was able to sleep through the night most nights because I wasn’t waking up choking on bile. And food was actually beginning to taste good again! It was amazing! I was beginning to feel hunger and actually crave eating certain foods. Eating suddenly felt like less of a chore and more enjoyable (although it’s still pretty tedious). The only thing that wasn’t ideal by the end of November was the fact that I felt queasy pretty much all day, every day. Not all the way nauseous, but not great. After an entire year of recovery though, queasy I could handle.

Ironically, I found out it was the cholestyramine that was making me queasy. I had run out of my prescription in mid-December, and because of all of the COVID-related holiday shipping delays, I didn’t get my refill before having to head back to Bethesda for my one-year follow-up visit. I was nervous to travel and go a few days without it, because flying seems to exacerbate reflux, but quickly discovered that my constant sea-sick feeling went away almost immediately and the reflux didn’t really come back full force.

My 1-year follow-up visit to NIH in December.

I met with the clinical team to review my labs and scans, and for the most part, things looked great. I was a little bit deficient in some areas and was told to add some extra supplements into my daily vitamin and calcium regimen, but that was pretty much it. My breast MRI, which had shown a suspicious spot the previous year before my surgery was clear, and while my Dexa scan showed a decrease in bone density, that was to be expected within the first year following surgery. Dr. Davis suggested I continue taking the cholestyramine as needed rather than daily to see if that would help with the queasiness, and prescribed me some to take home with me on my flight while I waited for the original refill to arrive. He also explained that so many months of constant bile reflux had likely caused esophagitis, which essentially feels and looks like a road rash, but inside your esophagus. He assured me that would continue to heal over time and that the spasms and constant burning would go with it. My only real homework after this trip was to try to stop losing weight and gain at least five pounds back.

It’s kind of wild because I currently weigh what I would’ve always considered to be my “ideal weight” for my height, and it turns out that it’s actually a bit too low for my frame. I wish I could go back and tell 18-year-old me not to worry so much about it and that I would prefer to weigh now what I weighed then. Go figure. It’s also proof that tools such as the BMI aren’t always the best and most accurate indicator of health. According to the BMI, I could lose another 18 pounds and still technically be within a healthy range, but I am currently 5’7” and a size 2 – there is literally not another 18 pounds on my body I could afford to lose. Bodies are strange and drastically different from each other.

All of this to say, by the end of 2020 I was getting a glimpse of the fact that maybe I would feel 100 percent again. And, aside from a stress-related setback this past January, it has. The month of daily cholestyramine seemed to be enough to calm the bile reflux, and thankfully, I’ve only had to take it a handful of times in the past few months since. After a frustrating additional four-pound loss in January, my weight loss finally stopped, and I have even gained a pound and a half in the past two months. I realize that doesn’t sound like much, but I’m just so grateful to be moving in the right direction. By the end of March a couple of weeks ago, I realized that I finally had all of my energy back. Most days, I can now work a full day without feeling completely exhausted. I even have energy left over to get things done at night. I genuinely wasn’t sure I would ever get here again. I finally feel like myself and, right now, I feel pretty damn unstoppable.

So, here we are, hopefully having come full circle. Two years ago feels like a lifetime ago. So much has happened and changed since then. I’ve changed since then – physically, mentally, and emotionally. This road has not been easy, and it’s taken much longer to get here than I ever thought it would. Would I do it all again? Yes.

Mom on her 50th birthday.

My grandmother died at 62. My mom always said, “I just have to make it to 62,” and she died at 54. You will not ever catch me saying I will just make it to anything. I visualize myself as an old woman every day. I, much unlike most of the people my age, look forward to getting old. I want to grow old. It’s a privilege to do so, and I watch people younger than me die too often in the online stomach cancer community. So, no, you will never catch me pretending to be younger than I am, or complaining about growing older. I may joke about gray hairs or deepening forehead wrinkles, but even those don’t really bother me much. I will happily live to 112-years-old if I am healthy enough to do so.

I wish my mom had been given this chance. She would only be 60 years old. There is still a lot of life left to live at 60. Today, I visited her grave. I took her flowers, and I meditated for a while. I talked to her about life and I sang her happy birthday. Then, I made a promise to her that I would live my life to the fullest for myself and in honor of her. And that’s a promise I intend to keep.

Happy birthday, Momma. I love and miss you so.

Surgery

I have started this post too many times to count. I have written and re-written it, added and subtracted details and anecdotes. I have struggled with trying to figure out how to tell this chapter of my story for months, mostly because the story I have to tell isn’t the one I originally envisioned. The outcome is the same, but the journey was entirely different, and that has been a hard thing to reconcile. The short version of the story of my surgery is that my experience was traumatic. It didn’t go down the way I had hoped it would; it was much harder, scarier and more painful than I imagined it would be. And, well, that’s not the story I wanted to share.

I write this blog for me, but also for those who are recently diagnosed and are searching desperately for someone on the other side of things to tell them they will be ok. I don’t want to tell people who are already scared and overwhelmed that my experience with surgery was so hard, but that was my reality. So, if you are reading this because you stumbled across this blog looking for a fellow CDH1+ patient and you are scared, know that I am ok and you will be too. This mutation is rare, and complications in surgery are as well. Honestly, I should probably go buy a lottery ticket and put these odds to good use for once.

The other hang-up I have experienced in writing this is that there are big foggy patches in my memory. Heavy doses of narcotics do that to you. While I have detailed memories of my first week in the hospital, everything kind of goes blank after that or fuzzy at the very least. The fact of the matter is that I’m never going to be satisfied with this post - it’s time to just share the damn thing already and move on. So, let’s start at the beginning.

Eleven months ago, I had my stomach removed. I went into my surgery as prepared as I could possibly be. I had months to process the reality of what I was facing, I had been in therapy, I was working with an energy healer, and I was meditating daily. I scoured the CDH1 Facebook group, made new online friends in different stages of recovery and made note of all of their tips and suggestions. I am a researcher by nature; I like to be prepared and in control. By the time I got to the National Institute of Health, I was at peace with my decision, and ready to be rid of this heaviness that had followed me for the whole year and had put my life on pause. November 7, 2019 was a rebirth of sorts – a second chance at a life that I didn’t even know was in danger of being cut short two years ago.

In addition to being confident in my decision, I couldn’t help but be excited because two of my best friends had coordinated to stay with me during my recovery. Friends I don’t get to see very often, but love with my whole heart. It had been years in fact, since all of us were in the same room at the same time.

Finally to Bethesda, after a long day of travel and a few small-town girl hiccups.

I landed in DC on November 4 and met my friend Wendy, who had flown in from Nebraska, at the airport. She would be staying with me for the first five days and would be the person who would be with me as I came out of surgery. We caught the Metro at the airport and headed to our hotel in Bethesda, but only after being accosted by a senior citizen for improper escalator etiquette, and initially boarding the wrong train. We finally make it to our hotel, no worse for the wear and head out for dinner. I knew that one of the things I wanted to eat one last time before losing my stomach was a good steak, so we headed to Ruth’s Chris for the most ridiculously decadent meal imaginable - steak Oscar, lobster mac and cheese, Brussel sprouts, wedge salads and plenty of wine. I’m pretty sure we waddled our way back to our hotel room where we opened another bottle of wine and talked and laughed for hours until our voices were scratchy from exhaustion.

The next day, we headed to NIH and began my first round of pre-op appointments. I get admitted, meet all of the clinical team members who will be a part of my surgery and recovery, and get approved to leave the hospital on “pass”. This means that even though I am an admitted patient, I can leave at the end of the day to stay in the family lodge with Wendy, and can even leave the campus for the evening. I also learn that I am the second surgery on Thursday, so I’ll get to stay at the lodge the next night as well. After squaring everything away and checking out at the nurses’ station, we make our way to phlebotomy, where they take 18-20 vials of blood. You already know how this story goes, it takes way too long and I almost pass out. The next two appointments are for an EKG and a chest X-Ray. Those feel like a total cakewalk in comparison.

Very casually hiding my admission bracelets up my sleeve and laughing at how hard our waiter is judging our choices.

Finally, we are free to leave, so we check in at the family lodge and decide to head back into DC for dinner since this night might be our only chance to do so. We start off at POV, a rooftop bar at the W Hotel that overlooks the Capital. It was so packed that we could barely find a place to stand, let alone get to the bar for a drink. Let me tell you, you haven’t lived until you’ve been in a super chic and modern rooftop bar, surrounded by people in suits while you try to subtly shove not one, not two, but three hospital admission bracelets up your sleeve so you don’t look like an escaped lunatic ordering a drink. I’ve never felt sexier or cooler in my life.

After a couple of laps we give up on POV and decide to find a spot for dinner instead. We head to Hamilton’s which wins the award for the most randomly eclectic menu I’ve ever seen. Not to be outdone by the night before, we order a ridiculous amount of food and get judged hard by our server who keeps questioning if we are sure we don’t want to maybe share an entrée. We assure him that no, we don’t. I contemplate telling him I’m having my stomach removed and am making good use of it while I still have it because people’s reactions are usually pretty entertaining (they usually think it’s some sort of lame dad joke) but decide against it. We each order drinks and split a sushi roll, then follow it up with salads, brisket and pimento cheese sandwiches, truffle and sweet potato fries, and a gooey cake for dessert. After dinner, we head back to the Metro to make our way back to Bethesda and in a fit of laughter caused by some strangers and a rouge rat, we end up walking an entire block past the Metro station (the extra steps were probably a blessing in disguise on account of the pimento cheese and truffle fries). We are kind of a mess together, but we always manage to find our way.

The Roux-en-y total gastrectomy procedure. This is what my insides look like now - pretty wild.

The next morning, we make our way back to Building 10 for another round of tests and meetings with the team. I start the morning off with DEXA and CT scans, and I can’t help but chuckle at the amount of times I am both simultaneously asked if I am and told that I am not pregnant. After my scans we meet once again with Dr. Davis and he explains the Roux-en-y Gastrectomy procedure he will be performing the next day. I review and sign all of my consent forms for surgery, and to release my stomach tissue to be used as part of the study. The only thing left to do was my breast MRI and we were home-free until surgery the next day.

The MRI department was short-staffed and wanted to reschedule me, but since a breast MRI requires laying on your stomach (something I wouldn’t be able to do for quite a while in less than a day’s time) I wasn’t going to be able to do it at any other point, so they ultimately squeezed me in. I wasn’t prepared for how awful and uncomfortable a breast MRI would be. You are required to lay on your stomach with your chest propped up on a wedge box and your arms above your head, and to stay as still as possible for about 45 minutes. It’s an incredibly uncomfortable position to be in for so long, but it’s necessary because your breasts have to literally hang into the box beneath you in order to get the images. I didn’t think anything would be as bad as bloodwork, but the MRI definitely gave it a run for its money.

The seahorse is the unofficial mascot of CDH1 mutants because, just like us, they live without stomachs.

As we headed back to the lodge, I realized that somewhere in the midst of the day’s events, I lost my phone. The night before surgery, I lost my phone. It’s almost 5 p.m. and most of the labs and clinical offices are closing. I try not to panic thinking about what I will have to do if we can’t find it. Thankfully, Wendy finds it on 3NW, my inpatient floor – I had set it down when we were meeting with Dr. Davis. Flooded with relief, but still feeling frazzled from the day’s events, we decide to stick around Bethesda for my last meal. If you know me at all, you probably aren’t surprised that the last thing I decided to eat before surgery was Mexican food. We head downtown to a restaurant recommended by the NIH staff and have possibly the best strawberry margaritas I’ve ever had followed by chips and queso, and some pretty legit enchiladas. Ironically, we are kind of both over these smorgasbord dinners at this point.

As we head back to the lodge and get ready for bed, Wendy asks how I’m feeling and I tell her that it feels weird that I’m not nervous yet, and I keep waiting for the anxiety to show up. I assume I just won’t sleep much tonight, but that doesn’t prove to be an issue. I, a person who doesn’t sleep well on a regular day, got a full night’s sleep the night before surgery.

Thursday morning as I wake up, hop in the shower, and pack up to move into my hospital room, I still don’t really feel any nerves. As we walk back to Building 10 so I can check in for pre-op, I begin to wonder when I am going to meltdown but, ultimately, I never do. Not in my room where I changed into a gown and waited for the go-ahead, not in pre-op when they were placing my epidural, not when I was being introduced to each of the surgical team members that would be in the operating room with me. Not even as they wheeled me down the hall into the OR and strapped me to the table did I feel even a twinge of nerves. The only thing I felt was calm and sure. Given the fact that I’ve spent the better part of three decades being a full-on ball of anxiety, this feeling was unfamiliar, but a welcome relief.

The rest of the day is a hazy blur. I remember feeling some pain as I came out of surgery, but a few adjustments to the epidural took care of that. Dr. Davis decided to remove my gallbladder too because even though it hadn’t caused me any problems, he thought it might over the coming year and he didn’t want to subject me to a separate surgery a few months later if he didn’t have to. That was fine by me, I was just happy to be on the other side. I spent most of the rest of the day asleep and groggy.

My why. The reason I made it this far.

Realizing I would be recovering on the Oncology floor made it all seem much more real. It’s hard to feel healthy and still choose to do something so drastic.

All of my admission bands I spent two days trying to hide in public.

Waiting for the call to head to pre-op.

Minutes before being taken back to the OR.

My first meal: veggie broth, diluted grape juice and peppermint tea.

My first “real food” meal: mac and cheese, mashed potatoes and cottage cheese.

Friday morning, my foli comes out which means I can get up and start walking. I feel a lot of pressure from the wound vac on my abdomen and it’s hard to stand up straight, but I don’t feel much pain. That afternoon I graduate from mouth swabs to ice chips which was an exciting development. If you go 36 hours without drinking anything, ice chips are damn near heavenly. The rest of the day is pretty uneventful until about 7 p.m. when I get back in bed. There is no way for me to get comfortable, and no matter what angle I try on the bed, my incision feels like it’s pulling and is on fire. After a night filled with visits from the nurses, I am exhausted and feel even worse. They eventually move me into a chair, which helps relieve the pressure on my incision, but makes it much harder to sleep.

On Saturday morning, I’m still in pain (this is what we refer to as foreshadowing, kids) but I get to have a sponge bath and new bedding and gowns, which makes me feel more human, and after a few hours of being able to push for my pain pump, it feels like I’m able to get on top of it. I feel good enough to do a dozen or so laps around the halls and find that my pain goes away if I can sit straight up in a chair rather than lay in the bed.

That night, Katie, one of my other best friends, arrives and Wendy leaves to head back to Nebraska. I also get to order my first official “meal” this evening and settle on veggie broth, diluted grape juice and peppermint tea – about an ounce of each sipped out of a medicine cup. Katie stays with me until my last nurse check at 11 p.m. The nurse tells me she won’t come back until 5 a.m. to try to give me a good chunk of uninterrupted sleep, and I opt to sleep sitting upright in the chair again.

Katie, Wendy and I a half a lifetime ago.

Wendy, Katie and me all in the same room for the first time since 2012!

I wake up feeling so much better, take more laps than I can count, and Katie and I venture to the atrium overlooking the courtyard for a change of scenery. I get to lose my fall risk bracelet and my IV fluids this day so I’m really starting to feel like everything is on the upswing. The only thing keeping me attached to the IV pole at this point was my epidural pain pump, which was hopefully coming out in a couple more days. From there, if things looked good, I would be able to move back over to the lodge for the last part of my stay and just head back to the hospital for daily check-ins. My spirits were pretty high with all of these details falling into place. I graduate from liquids to soft solid foods and manage an ounce of mac and cheese, an ounce of cottage cheese and an ounce of mashed potatoes for dinner.

Now, by this point, you might be quite impressed (or bored) with the day-by-day details I am able to recall all of these months later, but this where they end and this is where the story changes. It’s here that things begin to take a turn. Up until now I’ve been keeping notes in my phone about each day’s events so I could write about them later. But Sunday is where they stop. Everything from this point out is pretty hazy.

I know that Monday started out the same as Sunday, I was feeling pretty good and was able to do a bunch of big loops of laps with Katie around my wing and the atrium. We checked out all the artwork on the floor, and talked and laughed about the ridiculous things you only talk about with your best friends. But throughout the day, I was starting to feel the pain creep back into my incision, primarily on the left side and by that night it was pretty bad. At one point, as I’m laughing over a story I definitely won’t share here, I get a sharp pain to the left of my incision. I push my pain pump and stand up to walk it off. We do some more laps and head back to the room, and although the pain dulls, it never goes away.

Tuesday was the day I got to have my epidural removed and if everything went according to plan, I may even be able to stay in the lodge again rather that in the hospital after a day or so if everything looked good. But that wasn’t how things went down for me. Within about 20 minutes of my epidural being removed I was in excruciating pain. The nurses spent the rest of the evening trying to help me manage it, but by the morning, Dr. Davis ordered another CT and X-Ray to determine if there was an issue. Katie left Tuesday evening and my dad was set to arrive the next morning.

The CT scan and X-ray, showed that I had an anastomotic leak at my join site (where my esophagus now meets my small intestine) and I end up in emergency surgery to have a stent placed. Dad arrives right before my surgery. I remember laying in pre-op and sensing the urgency - even high as a kite on a cocktail of narcotics I could sense it – but, ironically, it didn’t occur to me that their urgency might mean this is an emergency situation. I was barely more than a puddle of pain at that point.

After my stent is placed, I get moved to radiology where they will place a tube to drain the bile that has been collecting in my abdomen. Unfortunately, I have to be awake for this part so that I can help position myself and hold my breath for x-rays. I’m still coming out of surgery and groggy, but alert enough for them to get the job done. Now, we are adding fentanyl to the mix as I lay propped on one side. Getting the tube placed was awful, but at this point I don’t even care, I just want the pain to go away. I get wheeled back up to my room with a whole new host of tubes and IVs, a new pain button, and a bag to collect the bile draining out of my body.

The bag of green bile is hard for me to look at. It takes me right back to the NG tube mom had in the hospital and hospice that constantly drained the bile out of her stomach as she lay slowly dying. Looking at it makes me panicky, and it was literally pinned to my gown so there was no way to avoid it. I’m officially NPO other than ice chips. So much for that one ounce of mac and cheese.

At some point (a few days later – maybe 5?) Dad has headed back home without me. Another CT and X-ray show that the tube now needs to be moved to a new spot to continue draining bile. The scans also show lower lung atelectasis and a bilateral plural effusion, meaning my left lung was partially collapsed and there was a build-up of fluid between my lung and chest cavity. Back to Radiology I go to have the first drain moved, and to have a pigtail drain placed on my lung. This time around is infinitely worse for a number of reasons. Number one, I now know what to expect, and am aware that this will be no picnic. Number two, placing the pigtail drain on my lung is shockingly more painful than the g-tube drain. A very kind nurse tries her best to keep me calm as I hyperventilate and cry and beg them to give me a minute. I feel like I’m suffocating because I can’t take a deep breath and the oxygen mask that needs to be sealed to my face in order to work and provide me with both oxygen and infused fentanyl makes it feel even harder to breathe. The team was patient and kind, and I’m sure the whole thing probably took less than 15 minutes, but it felt so much longer than that.

Again, I’m wheeled back up to my room with even more cords, plus a box that is now collecting the fluid from my lung, as well as a new set of accessories with timers and alarms. Now, I’m connected to so many tubes and cords that I am not allowed to get out of bed without a nurse’s help anymore - which is fine, I can’t anyway. I can barely move. The whole left side of my torso is in pain. Nothing that has been done has relieved any of it yet, and if anything I feel worse because I now have new pain in new places – like where the drains were placed. Plus the sharp pain in my back anytime I take even a shallow breath.

At some point during the second placement of my drains, my friend Amie arrives. She had planned to take a road trip to visit me back at home, and opted to fly out to Bethesda instead. She is able to stay for a couple days and keep me company. Unfortunately, I don’t remember much of her visit.

Amie leaves, and my friend Ashley takes the train down from Philadelphia to spend a few hours with me on Thanksgiving. It was so sweet of her to give up her own holiday plans to make sure that I wasn’t sitting in a hospital room alone. The president of NIH hand-delivers Thanksgiving baskets to all of the patients who are hospitalized on the holiday, which is a sweet gesture, but I cannot help but laugh at the irony of receiving a basket of food – including chocolate truffles and sparkling cider when those are out of my realm of reality even without complications. They also serve a special Thanksgiving dinner, but I am still unable to eat solid foods because of my stent, so I settle for a Premier Protein shake.

Other things I remember in no particular order (because I can’t even begin to remember the order):

• I’m on so many narcotics I cannot see. I can’t return text messages (or type notes in my phone) because everything is fuzzy and my eyes can’t focus. I give up on even trying. I talk to some people on the phone, but I don’t remember any of it. My dad and I play cards, but I don’t remember that either.

• A resident who looked to be about 25 (although I’m sure he was older) comes in to tell me I am getting a suppository. I don’t even care. I can’t take a shower because of all of the drainage tubes, and a kind aid has to give me sponge baths. I don’t care. I am so weak from not being able to breathe properly that the walk from my bed to the bathroom wipes me out to the point that I sometimes need help just getting up off of the toilet. I don’t even care. You really get over any modesty issues you might have in a hospital. A sweet nurse who has some extra time in her schedule, thanks to her other patients being on day passes, offers to help me wash my hair since I can’t do that during a sponge bath and I definitely can’t bend over a sink. Everybody is so kind. All of the nurses (not just mine) come and check on me to see how I’m doing and if I’m making any improvements. It feels like I might be here forever.

• Every morning starts with bloodwork, a heparin shot, a weigh-in and vitals. This wakeup call comes usually before 5 a.m. and is definitely a rude way to wake up. These morning weigh-ins also show me that I am gaining weight despite having had my stomach removed weeks earlier and being allowed nothing but liquids. My body is so swollen, and my feet and legs get so big that the slides I brought for walking the halls don’t even fit anymore and they have to bring me men’s XL grip socks so I can continue to walk my laps.

• Every morning, in addition to the bloodwork, heparin shot, weight/temperature combo, I also get wheeled down to radiology for a chest x-ray to make sure that things are continuing to move in the right direction.

• Because I can’t breathe, the laps that were in the dozens during the first few days of my stay are much harder to accomplish now. One lap around the oncology wing makes me feel like I might pass out as my heart is beats out of my chest. Building back up to even two or three laps takes days to accomplish.

• At one point, a nurse asks me to try to walk to the VAD clinic on the other end of the third floor to have my IV replaced. I overestimate my abilities, and must’ve looked pretty concerning when I finally got there because two attendants rush to me and get me a wheelchair. Oh, and yes, VAD clinic. I have to head there every few days to have a new IV placed by ultrasound because my veins are so terrible that the nurses can’t do it in the room, and also because they are so terrible, my veins keep blowing every few days. On my last visit to the clinic, the day before I was finally discharged, the tech showed me that I literally had no veins left to use and if the last one she was able to place blew, I was going to require a picc line in my neck. It didn’t (thank god).

• Because of the issue with my lung, I needed to do breathing exercises and treatments, and one involves a medication called mucomyst, intended to help break up mucus in the lungs. Unfortunately, this wasn’t my first run-in with mucomyst as my gastroenterologist back home had me drink a shot of it prior to my second EGD to help dissolve mucous in my stomach lining, which he was hoping would lead to clearer biopsies.  Mucomyst is a sulfur-based medication, so you can imagine what drinking or inhaling it was like. After a nebulizer treatment with mucomyst, I would retch for 20 minutes and gag up white foam. My whole body would hurt from the effort. Throwing up without a stomach is NOT like throwing up with one, but I learned it is still absolutely possible. It’s hard to get anything up, but your body still tries. It’s exhausting. After learning that the mucomyst wouldn’t actually have any benefit for my particular lung issue, I vehemently declined treatment every single day.

• The palliative care team stopped by daily to ask how I was doing and if I would like to request any services. I opted for a few rounds of acupuncture and a massage, but was in no mood for a visit from therapy guinea pigs or a pastor.

• At some point, the smell of NIH started to make me nauseous. Everything made me nauseous, but the smell of the cleaning products and laundry detergent started to feel overwhelming and I couldn’t get away from it.

• One day, Dad and I walked around a holiday market on the first floor of NIH. I had to take so many breaks to get there and back, that at one point I wasn’t sure I was going to make it. Another shopper let Dad buy me a scarf she was also looking at because she thought I needed it more. I cried. I cried a lot in my weeks after surgery at the hospital. I cried from pain, frustration, because I was scared, because I was tired, because I was worried life was never going to be the same. I’m not actually much of a crier but for a while it felt like that’s all I did, and that trend continued at home too.

The face of sheer misery, and the legs and feet of epic proportions.

The walks that were so easy a few days before became a huge struggle.

Attempting to walk through the winter market on the first floor for a change of scenery.

The scarf that made me cry.

Proof that we played cards. Golf, apparently.

Dad leaving without me on the day I was originally supposed to be discharged.

Before I could get cleared to go home, I had to have another type of x-ray done in which I had to drink a solution so they could watch it go through my system in real time to ensure there was no longer a leak. After the all clear from the radiologist, I was back in the OR to have the stent removed. Dr. Davis mercifully removed my drains while I was under as well, even though those were supposed to come out later in my room.

All in all, I had more IVs placed than I can remember – maybe a dozen? I received somewhere around 75 heparin shots (some of which I still have bruises from to this day, almost a year later). I ended up with something in the neighborhood of 50 blood draws between the lab work before and after surgery and the daily labs. I took more heavy-duty pain killers than I ever hope to again in my life.

After my stent was removed, I was allowed soft solid foods again, and was monitored to make sure everything was moving correctly and smoothly. Finally, on December 1, I was discharged and able to head home. My dad flew back out to help me, and I don’t remember much about that trip other than how uncomfortable it was to sit in one position for so long, and how nervous I was about getting across the Minneapolis airport for our connection when I could barely do the laps at the hospital.

I really struggled to share this story, because it wasn’t the story I was hoping to share. I wanted to be able to share a positive, smooth, surgery and recovery. I didn’t want to write anything that might scare someone away from surgery if it was a decision they were also trying to make – it is a hard enough decision to make as it is. And if I’m being honest, I didn’t want to relive it by writing it all down. It’s been hard mentally to go back to that place and time to piece everything together. But my experience wasn’t everyone’s. There were at least 5 other patients of Dr. Davis’ that came and went and had totally uneventful surgeries and recoveries while I was hospitalized.

I try so hard not to be negative, but this experience was traumatic for me. It’s hard to do something so scary. It’s hard to be far away from home. It’s hard to decide to cut a vital organ out of your body for the chance to live a longer life. It’s all very hard. And, I don’t want to, but I would do it all again if I had to.

I am so grateful for the people who rearranged their lives to come stay with me and make my month in the hospital more bearable. For everyone who sent flowers and cards, and called and texted. Even if I couldn’t respond, I knew what was going on, and the love I felt was overwhelming. Sometimes it takes something hard happening to show you who you’re blessed with. And I’m blessed with so many amazing people. But that’s a story for a different day, because this is already too long and they deserve more recognition than that.

Shoutout to all of these amazing people who dropped their own lives to come and stay with me in the hospital.

I can’t begin to tell you how grateful I was and am for all of them.

I love them all so much.

They made a hard situation so much easier to bear.

And I hope they know I would do it for them in a heartbeat too.

Honorary mention to my boys in Omaha who made me sweet get well soon signs.

Up next week. A Recap on recovery and what life has looked like since I got home. Thanks for sticking with me.

11/7

Well, at long last, it is finally official. My total gastrectomy is scheduled for November 7. 11/7 sounds like a lucky day – like the Beyoncé song, except exactly the opposite, but whatever. Just let me pretend I’ve got some Beyoncé mojo up my sleeve, ok? So much has happened since my last post. It’s tough to sit down and rehash everything, but finally, I do have a date set which seems like a feat worthy of a celebration. A date that is now a short three weeks away.

I keep thinking that updates will get easier to write but, they haven’t as of yet. I get overwhelmed by the sheer amount of information I’m trying to share and, the fact of the matter is, trying to organize my thoughts feels like swimming through a pool of pudding. I’ve currently got a perpetually distracted and exhausted brain, and at the end of the day when I can finally take some time to sit down and write, my mind is spent. It is also hard to go through some part of this song and dance and then want to immediately write about it. Finally, it gives me a real vulnerability hangover. It’s like those dreams where you are giving a presentation naked, only it’s not a dream and I’m doing it voluntarily.

I’m doing it because it is important for me to write through every part of this experience. If I feel resistance to do so, well, then it’s probably even more important at that point. And if at some point, a newly-diagnosed someone happens upon this site, grasping for a glimpse of their journey ahead, and feels a little more understood and a little less alone, then it has more than served its purpose.

With that said, back to the BIG news. Many things have obviously transpired from July to today. After months of fighting with my insurance company for coverage and filing external appeals, I was getting desperate to find information I could share that would convince them of my need to see a specialized team. I searched CDH1 on Facebook hoping to connect with others about their experiences. My goal was to find a way to prove to my insurance company that this isn’t a typical surgery that can be performed locally, and that most patients travel to a specialty hospital. I didn’t exactly know what good that would do me, but I needed to do something. I found two groups to join, one for people with the CDH1 mutation, and another for those with full or partial gastrectomies. I don’t know why I didn’t think to do this sooner, but searching out a group for CDH1 hadn’t crossed my mind up until that point. I suppose the sheer amount of panic, and the aforementioned issue of pudding brain probably didn’t help.

It was in the CDH1 Facebook group that I finally found the ray of hope I was searching for. As I already expected, most people had their surgeries at a handful of hospitals across the country, but a great majority of people mentioned procedures at a facility they kept referring to as NIH. I had no clue what facility they were referring to. I had gotten used to hearing a few facility names over and over – Sloan Kettering, MD Anderson, Stanford, and the Mayo Clinic popped up frequently, but NIH was new to me. I did a quick Google search and proceeded to lose my ever-loving mind. For those of you who are as unfamiliar as I was, NIH is the National Institute of Health, which is a division of the Department of Health and Human Services – it is the United States’ medical research agency. As luck would have it, and the first time anything felt fortuitous at all this year, the National Cancer Institute (a division of NIH) is, in fact, studying the CDH1 mutation. I immediately emailed the team. I couldn’t even believe what I was reading was real.

You see, I had already spent a great deal of time searching for a study to be a part of. I had initially been pretty hopeful I would find something since this form of cancer and genetic mutation are both so incredibly rare. Yet, I had no such luck. Friends in the medical field also helped me to search and came up empty-handed as well. Not one single person ever mentioned this study to me, not even the genetic counselor who was trying to advocate for me with all of my insurance issues. I would’ve never found out about it if I hadn’t searched out this group. Social media – turns out it can be a force for good.

I heard back from the team at NIH the next day. The study was in the process of proposing funding to expand to 1,000 patients from the initial 250. The patient coordinator informed me that since I had already had the genetic testing and some of my initial scans and procedures done, the delay would not affect me. For the second time in less than a month things finally felt like they were going right. I booked my trip to meet the team and was on my way to Bethesda, Maryland by the end of the month.

The hotel was very nice, but this luxurious balcony had me cracking up and left me with questions.

My trip to Bethesda got off to a comically rocky start. After a long day of travel (because there is no such thing as a short day of travel when flying from the blessed middle of nowhere) I gave my Uber driver the address to the hotel. A 35-minute drive later and he was dropping me off and wishing me well on my journey. I was downright giddy as I rolled my suitcase into the lobby to check-in. It was hot, I had been up since 3 a.m. and it was already after 4 p.m. I couldn’t wait to sit in the peace and quiet of an air-conditioned hotel room for an hour and hop down to the hotel bar for a drink. But all of my hopes of relaxation were quickly replaced with panic when I discovered I had somehow booked my stay at the wrong hotel. The Marriott that I was standing in, the one a half a mile from and with a shuttle directly to the NIH campus, and the one who’s address I had written down and printed off for good measure? Yeah, that wasn’t where I had booked my room. I had somehow managed to book at the Marriott Suites a few miles further down the road. There was no shuttle and as sympathetic as the hotel staff was, they couldn’t help me switch my room from a sister brand. So, deflated, and dreams of happy hour relaxation dashed, I requested a new Uber to take me to the actual hotel. I get to the right spot without incident, albeit a little worse for the wear and frazzled. I skipped my original plan of a drink at the bar and spent the rest of the evening hibernating in my room and preparing for what was sure to be a busy day.

I had trouble sleeping that night, my stomach was filled with butterflies. I wasn’t nervous per se, it felt more like Christmas Eve when you are a kid and you are trying to hurry up and fall asleep to make tomorrow come faster. I didn’t end up getting much rest, but I took my excited nerves as a good sign. The next morning, I grabbed another car to head to the NIH campus. I had no idea what a process it would be to get there without the shuttle, but I was about to find out. My very sweet but confused driver tried to drop me off at the employee entrance, and we learned we were on the complete opposite side of campus from where we should be. We get to the correct gate (because the NIH is a branch of the government, getting onto campus is similar to getting onto a military base) and he insists on going through security with me and getting a temporary pass so he could drive me directly to the admissions building. It was a kind gesture to offer the now harried woman in his backseat, and I was grateful because the campus is quite sprawling and I didn’t have my bearings on where I was going yet.

As the driver dropped me off and wished me well, I scrambled to figure out where I needed to be. I was officially late. It was exactly time for my first appointment, but I hadn’t even been to admissions to check in yet. My plan to have an extra 45 minutes to get my bearings and ground myself was out the window. I remind myself that being frantic won’t change things and definitely won’t help, and solider on. I find my way, get checked and head to phlebotomy in pretty quick order. I have an hour between my labs and my first clinical appointment, so I am hopeful that I can get this train back on track. I thought I might even have enough time to treat myself to a coffee before my clinical appointment as a reward for not being a huge baby about my bloodwork. But, as you may have guessed, that didn’t really go as planned either.

I have severe anxiety about bloodwork. I have difficult veins, they roll and move and collapse and each time I go in for bloodwork, it turns into a painful and long ordeal. It has been like this my whole life, and some particularly traumatic events from childhood make this process even worse. I always try to warn the lab tech, but they always think I’m exaggerating. As I watched the tech set up, I realized that he was going to need about 15 vials of blood and knew that we were going to have a problem. I have a window of time before things go south and go south quickly so I needed him to get a good vein on the first shot so he could get in and out of it fast. It’s completely embarrassing, but I will pass out. It’s something I wish I could learn to overcome, but I haven’t had any success thus far. The thing is, I’m not squeamish about blood; I’m not even necessarily squeamish about needles. I can manage blood just fine, and shots and IVs are not a particularly big deal for me. It’s just bloodwork. It’s the process, not the tools or the byproduct that gets me.

The bruise so big you can’t even see it all in one photo! The most impressive bloodwork bruise thus far.

I do what I can and give him my usual spiel: “I have bad veins in my arms, they are difficult and they roll, but my hand always works, so if you could take it from there that would be better. Also, I have anxiety about bloodwork so I’m not going to watch you or talk to you while you do it.” He assured me he could get one in my arm and that it’s much faster that way. I knew he was wrong and knew we were about to enter the same old scenario. So, he poked me once, no luck. Twice and the vein moved, one more time and then he began fishing around in my arm for it, just like clockwork. He finally finds the vein and tells me it’s flowing slowly. I already expected this, my vein had collapsed. At this point, we are not even quite halfway through the blood draws and he has to stop to find a new spot to redraw and the only thing keeping me from losing consciousness is the sheer embarrassment of being a 35-year-old who cannot handle a simple panel of bloodwork. I’m clammy and shaky and he makes me lay down with an ice pack on my neck before calling in a different tech to finish the draw from, you guessed it, my hand. The second tech gets the vein on the first try and we are done in about a third of the time. And while my arm turned comically purple, my hand didn’t even so much as bruise. Go figure, right?

Mortified and wobbly-kneed, I head to my next appointment. The extra time I was hoping for was gone yet again, and at this point, all I can do is laugh at how ridiculous this adventure has been so far. It wasn’t ideal to make this trip alone, but it was a good reminder that I can absolutely do hard things myself; even if I don’t want to, even if they don’t happen gracefully.

With all of the obstacles of navigating my way to this point, things finally took a turn for the better. I breathed a huge sigh of relief walking through the doors to the clinic wing. All that was left to do was the most important part – meet the team. For the next couple of hours, I was ushered from one room to the next meeting with different members of the study team. I met with the dietician, the genetic counselor, coordinators, nurses, a physician’s assistant, and finally the surgeon himself. All of these people, and even more that I didn’t meet, all working together to study this one particular thing, this unknown that had been hanging over my head for months. It was amazing! I’m not sure I can put the sheer feeling of relief I felt into words. For the first time, I really felt like everything would actually be okay.

The entire team was patient and kind and answered all of my questions. How will I get enough nutrients if I am eating such limited amounts of nutrient-dense food? How do other patients handle starting families after this diagnosis? How difficult will recovery be? They answered any question I had and told me I could always call or email if I think of anything else. Much of the information shared at NIH echoed what I was told at Mayo back in February, so I was prepared for most of what I heard. The biggest difference between the two hospitals came when I met with Dr. Davis himself.   

Dr. Davis is friendly and approachable, not qualities that are always associated with surgeons. He immediately put me at ease. Don’t get me wrong, I felt the team at the Mayo Clinic was extremely capable, but it felt significant that Dr. Davis’ only focus is on studying the effects of CDH1 on the stomach. He has performed hundreds of total gastrectomies, and because of that experience, his patients have a markedly better recovery. Although he specialized in laparoscopic surgery prior to leading the study, he does the TG as an open surgery because it is more beneficial to long-term recovery. In his words, we are in this for the long-haul together, so he has a greater investment in lessening the complications down the line because he can actually see their effects. Typically, you may see a surgeon for a few follow-ups after a procedure to make sure everything is healing well, but they won’t often know if you have complications years later. That continuity of care and his confidence in the way he performs his procedure were enough to make me feel like the trip across the country for surgery will be more than worth it. Not to mention the fact that being a part of this study could hopefully change the course of the onset, screening and treatment of Hereditary Diffuse Gastric Cancer for future generations.

Behold the only photo I took at NIH at all. It is a beautiful facility, but you’ll just have to take my word for it I guess! I’m not sure what the context of this even was…oh well.

During my visit, I was able to catch up with three other women who were at NIH that day. Two sisters who were in town for their 3-month check-ups, and one patient who had just had her surgery the day before. It was an amazing experience to be able to look into the eyes of someone who knows exactly how all of this feels, versus just chatting online. That was something I was missing much more than I realized this year. None of us had much time, but I was able to catch a few minutes with the sisters in-between appointments in the waiting room, and I was able to walk a few laps with the newly-minted TG patient.

As I left NIH that afternoon it felt as if months of weight had been lifted off of my shoulders. The next morning I was back on a plane and headed home. I had only been in Maryland for about 36 hours, but it was enough to change my whole life.

I will head back to NIH on November 4 for pre-op visits and will stay in recovery until November 21. That’s a long time, but I know it is ultimately better to stay until the doctor and I both think I can manage the trip back home. Dr. Davis has also advised me to take eight weeks fully off from work before easing my way back in. At first, I was surprised. That was much longer than I had anticipated, but this is not a small surgery and my body will be relearning how to do pretty much everything. I guess it’s probably understandable to give it a little extra time and grace to do so.

It is a little bit bittersweet finding this study so late in the game, but I know that everything happens exactly when it is supposed to. I still have medical bills I am responsible for from all of my previous tests and scans that took place here back in Rapid City. But, I won’t have to continue to delay surgery to fight with my insurance company for coverage, or ultimately go forward without coverage and end up with hundreds of thousands of dollars of medical debt. Now, if I can just get through the end of the year financially, everything else suddenly seems very figureoutable. Finally. Gratefully.

My amazing group of friends created a GoFundMe to help defray some of these costs and to help keep me afloat in November and December. I haven’t shared information on the GoFundMe page yet myself because, well, it’s really hard for me to ask for help. But, as I said earlier, I’m learning I can do hard things, and if you are so inclined I would humbly and thankfully accept the help. If you would like to contribute, you can do so by clicking this link.

If you have already donated, thank you. It means more to me than you could possibly know. I wish I could hug and thank each of you personally. I haven’t had much time yet to sit down and respond to everyone officially, and to be honest, I get teary and overwhelmed every time I try. Fortunately, I’ll have eight weeks of free time for writing thank you notes very soon. :)  

I am finally in the home stretch of this thing that has had a hold on my life for the entire year – I feel a real urgency to be on the other side. I am ready.

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.