Recovery — Reverie Rising

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.

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.