Cancer is an adventure and one part of that adventure for many cancer patients is surgery. Would you like a long, detailed update about my life since August 31st? Ok! Here we go.
Well, it’s been two weeks since I had surgery to remove half my liver (which, I’m told is almost totally grown back already!) and my entire gall bladder. Forgive me for the delay, but between the anesthesia, the pain and the side effects of the pain medication, it would have been a bad idea. For example, a few days ago, I went to text a friend (Kelly Cooke) and realized that I had texted her in the middle of the night from the hospital “These pain meds are awesome.” I’m not sure if it’s funnier that I wrote that or that she totally ignored it.
Surgery was…surgery. I’ll give you some details because sometimes people get sent to my page because they have a similar diagnosis and they Google what to expect.
We arrived at the hospital at 4:45am. It is always interesting to see the groupings of people there for early morning procedures. Some people come with just one other person and are pretty quiet and grim-faced. Others are calm or upbeat (probably the lucky laproscopic patients!) I’ve noticed that Latino people with an older relative going in for surgery come out in droves – the whole family – and are pretty lively. I’m happy to report I’ve never seen anyone in the early morning surgery waiting area alone. That would break my heart.
My trusty driver and husband had his coffee, his newspaper and his laptop at the ready. Shortly after we arrived, my lovely, loyal, generous friend, Jennifer showed up. You really love someone if you wake up at 4am for them. That’s an official friendship measurement unit of some kind. We only got to visit a moment before they took me back, had me undress and stuck me with a bunch of needles attached to little tubes. Kevin was allowed to come back and sit with me. They started giving me the good stuff – the medicines that cause me to make every observation out loud and discuss such obscure topics as Fraggle Rock. I get a little paranoid “Is that guy REALLY a doctor?” and a little silly “I can see that lady’s butt!” And then they put the nerve blocks in and I get grouchy because that hurts, dude. But then it doesn’t. And things get dreamy, and off I go to surgeryland. I have no memory between that and arriving on my room floor to see the friendly faces of Kevin, Jennifer, my mother-in-law and Kait. Apparently my surgery and post-op recovery took about twice as long as expected, so everyone had been riding an emotional roller coaster. That is the one time that being the patient is actually totally, inarguably easier than being the loved one. Not that being the loved one in these situations is a piece of cake by any means. Your friends and relatives take this journey with you, They drive you places, they help you organize your medication, they watch the needles go in, they hear you barf through the bathroom door, they hold your hand while you fight a battle of heartburn or nausea or aches and pains silently while your 6 year old tells you some rambling tale from the playground. They are definitely in it with you and I would never say it’s easy or less scary than experiencing it yourself. Love is like that – you sometimes fully care MORE about someone else than you do yourself. But no one else actually feels the physical pain or ponders their own mortality in the immediate way life threatening illnesses and treatments cause one to, or puts pressure on themselves for every factor that might make a difference – take this supplement, don’t eat that pesticide-laden nectarine, get 5,000 units of turmeric into your body today or else!! Being the patient is a solitary endeavor at times, even in the most supportive of circles.
But on surgery day, you, the patient, are in lala land and the fear, the waiting, the not knowing…it’s all placed squarely on them. Them. Your loved ones. They walk with you, carry you, comfort you, spur you on, buy you nice stuff, feed you good food, clean around you, make you laugh, and run ahead of you on the path, clearing the way of everything but the largest, immovable boulders – they are in it with you. But when you get wheeled down the hall on that gurney and you fade into unconsciousness, it is they who are left alone.
So, after hours of waiting and praying and hand-wringing, I am wheeled to my room. My crew awaits. I make a few comments about how between Kevin’s beard and Jennifer’s stylish hat, they look like an Amish version of American Gothic, and I manage to wrestle my phone from Kevin and take a few pictures.
That day and the next are mostly a blur. I remember two very good nurses, Alisha and Justin, who took excellent care of me. Justin and I became very close because our first two experiences together were removing my catheter (is there much out there that is more personal?) and the tape holding it tightly to my thigh. After about five minutes of his gently prying off that damned tape I looked at him and said “It’s like the world’s slowest Brazilian wax.” He roared with laughter and we were best friends after that. Even when he wasn’t assigned to me, he came by to check on me. Good nurses are seriously the greatest people. I didn’t have any bad nurses, per se, but the ones that clearly care and try to get what you need as quickly as possible, and treat you well are just so great. It took everything I had to not ask Alisha and Justin to friend me on Facebook. I know I’m just another patient, but I felt special because they made me feel special. Well, that’s not entirely true – I kind of always feel a little bit special. 🙂 But they made me feel like we had a connection, which is probably just them doing their jobs very well.
The first two days, I was on a liquid diet. That is fine – I have no problem with those kind of restrictions. They exist so you don’t send a pork chop barreling down your tender, healing insides. Here is what I have a problem with, though. You have just had surgery. You haven’t eaten real food in days and what do they bring you? Processed junk. Off brand Jello, which is simply corn syrup, which actual Jello also is, only in the case of the Yum Yum Jel Jel or whatever it’s called, the corn syrup is…syrupyer? Beef broth (blech!) made out of a boxed powder – more sodium than you can shake a stick at. Pudding (ok, I’ll admit, vanilla pudding, junk filled as it is, is a treat I let myself have about once a year.) But still! Sugar, and a list of at least 12 unpronounceable fake chemical ingredients. Does it really seem like this is what our bodies need then? Don’t we need nourishment? Vitamins? Minerals? Nutritional TLC? I barely ate anything because I just couldn’t imagine how it could possibly be any good for me. (Hey-ay – guess who is down a dress size?! Not the best way to lose a few, but I’ll take it.) We moved on to “soft foods” which included mashed potatoes and an egg sandwich. That is what I ate for two days because they seemed the closest to actual food out of my options. Let’s look the other way on the probability that the taters came out of a box.
I think it would be awesome to really revamp what hospitals are doing with food for patients. To really think through what is appropriate, nutrient-rich and promotes healing. What a cool job that would be. Ahem, Natalie Ilkin Coale. Just sayin’.
Visitors were probably the highlight of my experience besides, of course, doctor-ordered pain medication that makes you just not care about anything at all – my blood pressure never ventured past 120/80 during my entire visit. I had a few visitors. More like, a bunch. It was so nice to see those who came by. I fell asleep during half of the visits and have fuzzy memories of others. Some visits were planned, some pleasant surprises – Jim Lokay gets the award for “furthest travels” and we will just pretend he didn’t come home for some fancy event, and not solely to see his ailing high school musical partner in crime.
I got to be a guinea pig for some nursing students. And let me tell you, being a student’s first ever laxative suppository patient is a wild ride. A ride you wish you weren’t tall enough for, where a balding, grumpy, middle aged instructor stands by and utters the phrase “Insert, insert, insert…and…stop!” to a trembling, stuttering blonde girl who probably wished she could click her heels and head back to Kansas where no one needs suppositories because of all that corn they eat. That was a glamorous moment. Believe me.
My abdomen has never been particularly attractive. I carry my weight there and have always been kind of puffy around the middle. Even as a teenager, when your body is about as good as it’s going to get, I never donned a bikini. Well, even if they invent the actual magic bullet of weight loss and I get tight like Jillian Michaels, there will still not be a bikini in my future. You guys, I kind of look like a shark bit me! I have this incision that will eventually be a scar from my sternum, heading down a few inches, and then sweeping out to almost my hip on my right side. The bruising and swelling make it look like I’ve been a victim of a mob beating. It’s currently turning from that deep blue/black and purple to a sickly yellow with some spotty red like I have a bunch of hickeys on my belly. I assure you, I do not. When the bruises fade away, I’ll have a deep red scar that will probably change to white, and one day, when this is all behind us, make a very good story. Ready for pics???
The only other noteworthy thing that happened at the hospital is this: I had a drainage container that they call “the grenade” that is a clear tube inserted in your side, going deep into your belly where all the oozy, bloody junk gathers. The grenade sucks it out. Oof. That thing was gross. A clear grenade shaped ball dangling from a hole they made in your side. They were nice enough to pin it to my gown so it didn’t drag on the floor when I went to the bathroom. The nurse would drain it every few hours and it changed eventually from a dark red to a light red. The disturbing thing is that they would drain it into a plastic cup like out of which you might drink, say, a spiked punch or cheap red wine at a picnic. And then they would stand there and talk to me, holding it casually. I almost vomited each time, because I worried that they would forget what they were doing and take a swig. Arghghghgh!!!
Finally, the day of my discharge, the docs came through and said it was time to take out the grenade. I had been briefed on this by a kind surgeon and he strongly recommended I up my pain meds before removal because it is “quite painful.” The docs came through early that day and I had requested my first pain meds of the day, but they had not yet been administered. The nice surgeon said “We’ll come back in a half hour, ok?” I smiled gratefully and was about to thank him when the obnoxious PA with him ROLLED HER EYES and said “It doesn’t hurt that much.”
Look, Britney. First of all, Britney? Lovely name, but I just can’t handle the idea of someone young enough to have that name involved in life or death decisions about me. Maybe the life or death decisions of a hamster or reptile no one cares about. But Britneys may not operate yet. See me in 2020 and we’ll see how it sounds then. Secondly, SHUT UP. I just had my whole body forcibly ripped open. I have not complained one single time, unlike my neighbor down the hall who screams all day and calls all of the nurses “jackasses.” I am a pretty docile patient. Third, when A SURGEON tells you something will be QUITE PAINFUL, you freaking listen. So shush. And come back later, after I get my pain meds and I am less likely to smack you when this thing comes out. I narrowed my eyes and said “That’s not what I heard from the doctor.” He smiled and said it was no problem and they would be back. So, of course, a half hour later, my door opens and here is Britney, by herself. Sigh. So I endured what probably could have been a kinder, gentler procedure by a physician’s assistant that I just annoyed. So, new levels of pain were experienced for about 45 seconds. Oh well. I’ll consider it a teachable moment (be nice to the PAs even if they are little brats) and a character building exercise, which is the only benefit of physical pain.
I have enjoyed convalescing at home, receiving visitors, incredibly thoughtful packages and cards and catching up on reading and phone calls and napping. You really can’t rush your liver healing, so I’ve had to go against my instincts to “bounce back” and just lean into the healing and rest.
Today was my first doctor’s appointment. It was great to see my oncologist. He has just the right mix of cautious optimism, humor, hope and diligence. He talks about me to other doctors with pride. He believes in me, my strong spirit and iron will. He says I’m tough and laughs when I joke. I like it that he gets me. It is so important to like your oncologist.
He says we start chemo in two weeks. I plan on fully enjoying the rest of my chemo hiatus. Thanks for reading. Until next time…