“So do you have cancer or not?”
This is an actual question asked of me. While the question’s lack of sensitivity is shocking, the question is not. Here’s the answer…I don’t know. The doctors don’t know. And they won’t know until they take my stomach out.
Remember last time I mentioned biopsies? Well, back in August I went to NIH and had an Esophagogastroduodenoscopy (EDG).
During the EDG, the doctors took 88 sample biopsies from my stomach. I’m going to take a moment and explain the whole process. For those of you who might be preparing for your EDG and want some insight, this is for you…those of you who won’t be having this procedure, I won’t blame you for skimming down to the bottom (but feel free to read along anyway!)
I had my EDG completed at NIH in Bethesda, Maryland. I was scheduled for a Wednesday morning appointment so I arrived to Washington, DC on Tuesday evening.
My first appointment was scheduled for 10:00 AM. I arrived to NIH via the DC Metro around 8:45 AM. The metro stop for NIH lets you out directly in front of the main security entrance, so it is definitely the most convenient way to arrive. The first step at NIH is making it through security. First, you walk through a metal detector and scan your bags. Much like TSA pre-check, you can keep your shoes on.
Next, I stood in line to meet with an agent who could print a security badge. When it was my turn, I set down the book I was carrying – Victory in Spiritual Warfare by Dr. Tony Evans- to retrieve my license. The guard was so kind and asked me questions about the book. He and I talked about Dr. Evans and Jesus for a few minutes before he wished me the best of luck that day. A great way to start the morning!
I was ahead of schedule, arriving to admissions around 9:30 AM. I received a laminated yellow number and a small stack of basic paperwork to work on until my number was called. Once it was my turn, an admissions professional took me back to fill out more details via her computer and to sign different waivers and approvals. She printed my wristband and gave me an NIH welcome package, which included: a map, NIH booklet, and information on how to download the NIH app. I’d strongly recommend downloading the app!
Next up…Phlembotomy. Oh, joy. Helpful tip: they will ask for all kinds of samples…so, hydrate! I’ll leave it at that. They took enough blood to fill about 12 small vials. The woman who drew my blood was very gentle and kind and encouraged me once again how God has a plan. Jesus really showed up for me that day. He put people in my path to reassure me when I needed Him most.
After I felt stable enough to stand back up, I was sent to radiology for an EKG and chest X-ray. Not to brag…but they told me I have a perfect heart. That is for sure going on my dating app profile.
I quickly finished my EKG and X-ray and had time to grab a snack before I headed to Pre-Anesthesia. I wish that instead of a Diet Snapple I had just had water. It’s a marathon of a day and I should have been smarter about my hydration. During the appointment with Pre-Anesthesia, they go over all test results from that morning and take a few more vitals. They broadly go over how long the surgery will last and what to expect.
The largest chunk of my day was meeting with the oncology/ research team. Dr. Davis, Amynah, Grace, the fellow on call, and Rachel all met with me (if you are going through NIH, you should know these names well!). They were all incredibly knowledgeable and helpful. This is their world every single day and it was very comforting how confident they are in their facts. They are absolutely brilliant and took the time to answer all my questions. My conversation with Rachel, the nutritionist/dietitian, was the most applicable. More on that discussion later.
By the time the conversations were over, my dad had arrived. For those of you wondering if you need someone traveling with you…I don’t feel like I needed someone with me that first day. Everyone is different. However, there just wasn’t a lot my dad could have done other than walk through the hospital with me. That being said, they will not admit you for surgery unless you have someone to take you home post-op, so I definitely needed him on the surgery date.
The final step in this very long day was to get a breast MRI with contrast. The CDH1 mutation also puts me at somewhere near (no one can agree on percentages) 50% more likely to get breast cancer…specifically in the milk-producing glands. This is called lobular breast cancer. At some point, I will have to also consider having a double mastectomy and reconstruction. But, how about we remove one body part at a time?
I arrived for the MRI without an IV and so had to rush to a different department to get hooked up with a blank IV. I have teeny tiny veins which means getting hooked up is hard because it takes several tries to get into a vein. Good times.
The MRI itself was my least favorite part of the whole day. I am claustrophobic and also have anxiety. Perfect recipe for a closed MRI. The woman who took my scan, Reese, was very kind. She got me onto the bed (face down) and adjusted me. The upside: I now know what a cow feels like. Then she sent me in to the giant tube. Once I was in, she handed me an emergency button to squeeze if I needed out. I really, really, really wanted to squeeze that button.
I was told it would take approximately twenty minutes. So, I started counting. About halfway through, she told me that she was going to take me out. PHEW!! I must be really bad at math or count super slow! It was then Reese told me that the machine was giving very jumpy images even though I was being perfectly still. So, we went to another machine. I was near tears as it had been a marathon of a day being poked, prodded, and emotionally taxing. But, I knew I had to do it.
The noise from the MRI was deafening. There’s a song by Sanctus Real called “Confidence”. I had been listening to it on the plane the day before and while I couldn’t remember all the lyrics, I could recall the first verse and chorus and sang it over and over and over (in my head, I didn’t want to torture Reese) until the MRI was done. Ladies, I would highly suggest preparing what you are going to think about during the MRI. I almost pressed the emergency button, but talked myself into staying since I’d just have to start all over.
“I’m not a warrior. I’m too afraid to lose. I feel unqualified for what you’re calling me to. But Lord with your strength, I’ve got no excuse Cause broken people are exactly who you use.
So give me faith like Daniel in the lion’s den. Give me hope like Moses in the wilderness. Give me a heart like David, Lord be my defense. So I can face my giants with confidence.”Sanctus Real, Confidence
Finally, it was over. My dad and I left the hospital and grabbed something to eat. I asked the doctors if I should avoid certain foods the night before, but was only steered away from salad. So, we had street tacos! I had shrimp and Mahi Mahi tacos with a little bit of seasoned rice as a side. It was fairly light. Then we walked about four miles. I was so anxious that I could have walked another four miles. Biggest stress point: nothing to eat or drink after midnight!
My surgery was scheduled for 7:00 AM. We left our hotel in Dupont Circle around 5:45 AM and took the metro for 30 minutes to NIH. Going through security, I had the same agent as the day before and I was excited to be able to give him my copy of Dr. Evans book. I believe we walk among angels and he had been there for me the previous day and now it was my turn to give back to him. He probably won’t ever realize how much his encouragement meant to me that morning.
Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it.Hebrews 13:2
Dad and I walked from the security gate to the main clinic (about 7 minutes) and then through the hospital to the surgical waiting room. We arrived around 6:45 AM. They took me back a little after 7:00 AM.
First, they had me get into my gown and place all personal effects in a bag. They took my vitals once again. I was helped into a bed and at that point my dad was allowed to sit with me. The doctors came around and went over the procedure one more time, confirmed my birth date and that I was really me! The anesthesiologist appeared and she talked me through the process as she was inserting my IV. I was starting to get very nervous so I was more than open to the happy drugs! I don’t drink or smoke so I am very sensitive. By the time they rolled me back, I was feeling just fine.
Before they put the mask on my face to whisk me off to dreamland, they had me adjust myself onto my left side with a pillow between my knees and a pillow under my right arm. One deep breath, forty-five minutes, and eighty-eight biopsies later, surgery was over. An hour after that, I came out of anesthesia. By 10:00 AM, I was leaving the hospital. They wheeled me to the front door and sent me on my way.
Dad and I walked to one of my favorite spots in DC, Founding Farmers. I was still very much out of it, but was able to take down some mashed potatoes. I could feel the holes in my stomach which provided a very strange sensation. I flew back home that night.
While I was waiting at the airport the woman sitting next to me started conversation and I told her why I was in DC (anesthesia has a great way of pulling your walls down). She and her husband were headed to Denver and before she left for her flight wrote her information down if I ever needed anything whilst in DC again. She included the encouragement “you’ve got this”.
Angels. They are all around us.
I went back to work that next day. I felt very nauseous and on Saturday (two days post-op), I called the hospital to ask if the extreme nausea was normal. They said I may have some leaking and that it would normalize. I took a couple anti-nausea pills and the feeling passed by the next week.
OK – if you skipped the NIH details, here’s where you’d want to pick back up.
Three weeks post-op I received a call from NIH saying that they did not find signet rings on the sample selection. YAY…right? Well, it’s a bit of a false sense of security. Remember from last time we visited? Dr. Davis said they only find signet rings 40% of the time.
The most common story I hear: biopsies come back negative, but a positive pathology is found after a TG. The stomach is HUGE and this cancer is a sneaky little thing.
I can probably guess what you are thinking…why have the biopsies if they don’t tell you anything definitive? Great question! I also asked it. Well, it’s the best gauge they currently have.
So, do I have cancer or not? I don’t know. I don’t have cancer in the samples they pulled…however, the cancer could be one cell over and was missed in the sample. That’s how sneaky this cancer is. But there is a 90% chance I do have it.
There will be a 0% chance that I have it post-TG.