When I turned on my phone, it lit up with hundreds of notifications. It wasn’t until today that I could scroll on a phone without feeling nauseous, so I am working my way through all your messages and comments, and just wanted to say thank you — thank your for all your prayers, for your encouragement, for your love and support. I was carried by it all, and it made me feel invincible. And now, after having demonstrated my pee and poo skills (strangely not endorsed on LinkedIn), I have been liberated from the hospital and am recovering at home!
Big Dig recap
You pretty much got the play by play thanks to Sacha during the surgery, but I thought I’d do a quick Q&A here too. Feel free to post any other questions and I’ll answer them!
How do you feel about the outcome of the surgery?
As Richie posted, yay liver!!! Thrilled to have a gall bladder too, and the grossly clear margins are promising. The surprise was learning that the surgeon actually found and removed a 1 cm tumor on my stomach, which he suspects is GIST tumor (pathology needs to confirm). These tumors are even more rare than LMS tumors and occur about 4-6,000 times per year annually in the U.S. But, he said that my prognosis will be primarily determined by the LMS tumor, and that the maybe-GIST has a low likelihood of recurrence particularly when they find it early.
Were you a little scared that you might die?
Yes. Like 5% scared. Sacha said that he was more like 15% scared. I had one meltdown before surgery entitled “I Don’t Want to Die,” where I just needed to put it out there in case anyone was wondering. After that, I might have hugged my family a little tighter, teared up a little more at everyday things, and held off on ordering a few items that were on sale because who would be able to return them if I died, but mostly I was ready to do this.
During the surgery, were you able to astral project and haunt your children at school as you had hoped?
What’s recovery been like so far?
Far worse than the pain was the debilitating nausea, which was constant for the first few days. I wasn’t allowed food or water on days 1 and 2 — and was only allowed to have a mouth swab, which is a small sponge attached to a lollipop stick, every so often. I spent what felt like an eternity shaking, unable to open my eyes, and feeling sick. I did a lot of meditating and praying to pass the time. The narcotics made me really ill (vomiting after having your guts removed: not recommended), and the anti-nausea meds didn’t really help, so I started refusing pain meds.
Since they had operated on my stomach and manhandled my intestines, they wanted to be sure that both were working before allowing me too much food or liquid. Thing is, my digestive system is probably the most efficient thing about me, and I had a chat with it beforehand just to say, hey, step it up soon after surgery — so even though I could feel that peristalsis was starting, no one else could.
Not helping the situation was the fact that we were put in an overflow ICU unit, which was basically a 9×9 room with no windows or bathroom and little room for the bed and equipment. It’s meant for quick interventional radiology procedures — not for long term patient care — and it was so tight that the nurses often had trouble maneuvering around the bed to get to all my tubes. We couldn’t take out my catheter since there wasn’t a bathroom nearby.
Things got a little better when I was able to have tiny sips of water — a cup to last me a day. They were even better once I could have clear liquids (I had a broth which I later confirmed was disgusting, but the first bowl I had tasted divine, in contrast to sucking on a sponge), and was moved into an actual patient room. I continued to feel nauseous since I was getting pumped full of medications on an empty stomach. Please, I begged them, if I could have just one grape, or a slice of banana, I would feel better.
Once I was allowed soft foods, things improved immensely. The nausea was drastically reduced and I started taking IV Tylenol. Now, I just have pain, which in contrast to nausea, is really no big deal (except when I cough — ouch). And of course, being freed from tubes and wires attached to the nine holes they made in my body was a huge relief.
What does your incision look like?
Find the bottom of your sternum. Now start drawing dark purple a line about 1/2 inch thick down to your belly button. Then, make a rounded 45 degree angle toward the right, and go straight all the way to the right hip. Instagram-ready!
What did the tumor look like?
An uncooked pork roast. It completely encapsulated my kidney and part of my inferior vena cava (IVC), so it was impossible to distinguish between organ and tumor. The total length of what they took out was 15 cm. The graft on my IVC is a piece of plastic pipe that looks like the accordion part of a straw. So I guess technically you could say I got plastic surgery.
How long is recovery?
Full recovery apparently takes a year, and I’ll feel about 80% at 6 months. Fatigue is the primary long-term side effect as my body figures out how to work with a couple of missing organs and a grafted inferior vena cava. Oh, and I’m on aspirin for life, to prevent clogging of the graft.
Does it still hurt?
Yes. Especially when I cough.
This is a long post. You must feel great!
Nope. This took me all day to write.
What do you hope happens next?
Since I’m the proud owner of a full gall bladder and 99.5% of a liver, I’m emboldened to ask for more. I pray boldly for the pathology to show no visible cancer left behind. I hope for a miracle that eliminates the need for me to go back on chemotherapy right away. I want to be well enough take full advantage of what a friend described as my membership in the Second Chance Club.
Moving the needle
I had a chat with my surgeon about how to advance LMS research. We don’t have drugs that meaningfully affect the tumors; we don’t understand its causes or why it is so apt to spread.
It sounds like there are three main obstacles: money, people, and collaboration. For instance, he has a lot of data — but he doesn’t have the $40-60K per year to hire an analyst to actually input that data so that he can actually start asking important questions about LMS. Some institutions are reluctant to collaborate and share data with other organizations — something that is critical to a disease as rare as LMS where you’ll never get a big enough concentration of patients to conduct a meaningful trial. So things labor on with poorly constructed, commingled studies.
It seems like there are many solvable things that could at least get us moving in the right direction. So I said that after my belly closes up, we could talk more about ways to push things forward.
The bright side
Let’s start with the obvious: I’m alive. I’m home.
I’m so grateful to my surgical team for doing their best and for not eating Subway sandwiches over my open abdomen despite the very long procedure.
I’m amazed by the nurses who carried me through with I’m imaginable care and grace: the nurse who sat and held my hand at night when I couldn’t even figure out what I needed to feel better. The nurses who came in repeatedly without complaint to move and rearrange tubes so that I could rotate myself in bed just a little. The Mark Zuckerburg doppelganger who advocated for me to get oral potassium pills when the IV infusion burned my veins. The young A-Rod look-alike who happy-danced for my amusement when we found out I was getting a real hospital room. Nurses, I salute you.
My friends and family: you lifted me up to God until he was like, alright, alright, shut up already, she’s gonna be fine. You waited on updates. You sent along encouragement. You took care of my kids. You lit up the world with your positive thoughts and healing energy. Thank you.
I was home after just four days — well before the expected six to ten. I am so thankful to be recovering at home with my three untrained nurses. They’re strong enough to pull me up from a reclined position, and that’s good enough.
It’s been a long time since I’ve been praised and high-fived for passing gas and bowel movements. I’ll take it.
This morning, I got my two teenaged girls to color with me. Check out the coloring skills of a high school sophomore — she made mine look preschool:
Yesterday, from the hospital window, I saw this sunrise:
And then from home, I saw this sunset:
Hello from the other side.