Home is Where the Stomach Isn't?
Updated: May 2, 2020
This evening, I reflect on what has been one of the most interesting weeks of my life. Last week, Thursday, I had my stomach surgically removed from my body in a procedure called a total gastrectomy.
I know, most of you know this (if you do, skip to the next paragraph), but for the newbies, I wanted to give a quick recap. I chose to have the procedure because of a rare genetic mutation I possess (CDH1) which drastically increases my chances of lobular breast cancer and diffuse gastric cancer. In fact, stage 1 gastric cancer cells were already found inside my stomach via biopsy, so this procedure just couldn't wait. The current cancer guidelines for women with this mutation are to have prophylactic mastectomies (both breasts removed), and a prophylactic total gastrectomy (stomach removed) in order to prevent these deadly cancers from killing us. For men, total gastrectomy is recommended. Since I have already had breast cancer, gone through 15+ months of treatments, and subsequently had both breasts removed, total gastrectomy was the logical next step.
So, here I sit, in my hospital bed, at the National Institutes of Health in Bethesda, Maryland, recovering from another major surgery. Last Thursday, I was wheeled into the operating room just after noon, after having an epidural placed in my spine to help with post-op pain control, and the rest is history. I don't remember the recovery room, I'm not really sure how I got from the OR, back to my room on the floor, but I do remember being surrounded by my loving family, and wonderful staff here at the clinical center. They have all taken such wonderful care of me, and I am grateful.
Here are some of the things I have learned/thought about/witnessed in my first week as a stomachless seahorse:
Choosing the correct location for you to have your surgery is more important than I ever could have imagined. I definitely did my homework, and the NIH has been the perfect fit for my family and I, even though it is very far from home for all of us. So, if this surgery might be in your future, make sure to take all locations and facilities into account regardless of their geographical locations. With this rare of a condition, it is of the utmost importance that the people taking care of you know exactly what they are doing and looking for.
Being prepared for potential side effects, and speaking with others who have had the procedure before you is very beneficial. I knew some of what to expect because I am connected with a group of people who are all CDH1 positive and at different stages in their own journeys. Without this, I would have been completely ill prepared, because the doctors don't tell you all that stuff! I am an open book, ask away!
Having your first shower after a major surgery and after more than 5 days without one, is one of the most amazing feelings in the world, even if you were too weak to stand!
Anesthesiologists are a girl's best friend.
If you are in pain, say something right away. Because as the minutes wind on, it gets worse and worse until you can barely think or talk in order to get help. I will reiterate here, Anesthesiologists are a girl's best friend.
Nurses are amazing, but are not mind readers. Tell them what you want or need. They are usually willing to listen.
Make friends with the technician who knows where all the secret stashes of lotions, hair products, socks, clean linens, etc. are stashed.
Everyone's recovery from this surgery is unique. Even someone like me, or a family member who had their surgery on the same day, by the same surgeon, will have a completely different experience. So, don't believe you will or won't deal with certain things because someone else did, or didn't.
Each day of recovery there is progress, small or big. Day of surgery, I was in bed, couldn't move, had a catheter in place, and barely knew where I was. The next morning, I was out of bed, walking, going to the bathroom on my own, and with it enough to ask for what I wanted and needed.
I have said this before, and I will say it again, recovery from a major body trauma is never linear. There are set backs, but each day is different, and tomorrow is likely to be better.
Not having a stomach is really weird. I can't quite explain it yet. I feel hungry, but it is different than it was before. I feel full, but it is different than it was before. I can eat, but it is different than it was before.
Being thirsty has been the worst part. Because I can't chug/drink water like I used to, all I want to do is drink/chug an ice cold pitcher of water!!
Eating, although I have strict guidelines to follow, lots of people to ask for help with suggestions, and a staff of dietitians and nutritionists and cooks, IS HARD! I am trying to look at it as a positive in the long run, otherwise I might feel a bit depressed about it all. There are a lot of things I cannot have right now, and that is ok. I am eating to heal my body, train my mind, and get on track to move to the next phase of my recovery.
Drinking is even harder than eating (I will definitely write up some of my experiences, suggestions, etc. in the future, but give me some time).
Without my stomach, I can no longer have stomach cancer! We are waiting on official pathology results following surgery, but I have hope that it has all been removed and this is the cure we have all been waiting for.
My continued perseverance and sense of purpose will help me through this and everything I have been through thus far.
It's the little things in our lives that are the most important. Like: personal autonomy, freedom to do as we please, being surrounded by peace, love, and pretty things. Being strong enough to go for walks, out to eat, to the store, etc.
Hospitals are a constant invasion of privacy. You never know who might come in your room, people want to look at your body for various reasons, you have to be weighed in front of people, people help you shower, clean up after you, help you walk, see you naked, track you urine output, talk about your gas and poop, rip out tubes from your body, place tubes in your body, poke and prod you, and take and record your vitals all day long.
Thank you for listening. I will have much more to come, and hope you will enjoy reading as much as I do getting this stuff off my chest. I also hope to keep track of the funny things people say to me, as I am a weirdo and don't have a stomach. First one, my nutritionist says to me about taking my new best friend, the bariatric vitamin, "don't take this on an empty stomach." I gave her a funny look, and she says, "duh, I don't know what I just said that." We laughed.
Peace and Love,