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.