I’ve put off writing this post about my Whipple surgery for a while now because I know it means reliving some harrowing experiences, and I also know it’s going to take a long time to write, and that time could be spent sleeping. But, I know I NEED to write this because I can use all the catharsis I can get.
Ever heard of “the worst best news?” Alternatively titled, “the best worst news?” If not, makes sense, because I like to think I came up with it. The day I found out I had a large pancreatic tumor, I knew right away it was bad news. No tumor comes to you filled with glitter and unicorn wishes (if they did they’d have a much cuter name), so that part I knew. Receiving any kind of diagnosis is often just the very beginning of what you’re going to go through, although, at that moment, it may feel like the end, as in “I finally know what’s wrong! It’s all smooth sailing from here!” Whether you’d been suffering from pain and other symptoms for a long time before diagnosis (like I had) or not, diagnosis is a marked start to a new journey. Hopefully, it’s a journey of recovery, but it will have all kinds of other lessons sprinkled in if you choose to see them. Regardless, these journeys never seem to be linear, do they? They’re full of ups and downs that you didn’t think your mind or body could physically survive, yet here you are! And here I am.
Why I’m Writing This
My sole purpose in writing about my experience isn’t to bash into your brain that a positive attitude is a cure-all. It isn’t, so I won’t. (That isn’t to say a positive attitude isn’t an immense benefit to whatever you’re going through, but hell, if you find out you have a tumor and you can keep a smile on your face 24/7 after that, I’ll have some of whatever you’re having!) Besides the much-needed catharsis writing brings me, what I really want to do is be a resource for someone else who goes through what I did. When I was first diagnosed, I learned that what I had was very rare, and the nature of any rare medical condition is you won’t often find yourself in a room full of people who’ve gone through what you had, like you would with, say, a broken bone. These rare conditions can be incredibly isolating, and I hope by writing this, one person who needs to read this right now, finds it.
My Symptoms Leading Up to the Discovery of My Tumor
Over the past year, abdominal issues I’d had since age 12 started to become more and more aggressive. I would get crippling pain in my abdomen that would often incapacitate me for hours, and it was usually accompanied by a bad taste in my mouth. Weird. When I was four, I was diagnosed with a duodenal ulcer, and the symptoms I was experiencing were nearly identical to those of an ulcer. Based on my history, my doctor made the logical decision to begin treating me for an ulcer, just as any other doctor would based on my age, symptoms, etc. Ulcer meds weren’t working, though, and my symptoms were getting worse and worse. I would hunch over in tears, moaning and groaning for hours until the pain passed. One night, I ended up in the ER with my mom when the pain became worse than it ever had before. The ER doctor thought it was an ulcer as well but decided to run some tests to be sure.
First, I had blood tests, and they showed my liver enzymes as being higher than normal. The doctor said this could mean gallstones. While I waited for an ultrasound, I was googling the treatment for gallstones and the relatively simple surgery to remove them. “I can totally handle that and still be good to go on my trip to England in two weeks,” I said to myself.
After the ultrasound, I was sent for a CT scan. Rather than thinking “there must have been something on the ultrasound if they need further imaging,” I was mostly focused at the time on not wanting the radiation from the CT scan and that I could use a snack, STAT. We’d been at the hospital for several hours at this point and we knew we’d have to wait for the results for a while, so my mom darted home to let her dog out. Just as my mom was on her way back, the ER doctor came into my room and asked where my mom had gone. I said she was on her way back, and he said we’d wait for her until we discussed the CT scan results.
This is the moment where you feel your heart drop down to your feet, and the world becomes a different place for you from now on.
I told the doctor I was very anxious for the results and asked him to please tell me, but he told me I’d be anxious either way, so we’d wait for my mom. When the doctor left the room I felt my bottom lip begin to quiver and I let out one of those sighs/beginnings of a sob that can only be compared to a whale’s mating call. I sat waiting for my mom (another thing that only took a few minutes but felt like an eternity to me) and went between moments of “Don’t freak yourself out for no reason, everything’s fine!” to “Oh my god, this is it, I have cancer.” Interestingly, dying never went through my head, which still surprises me to this day. When my mom walked back in the room, I reached for her and cried out of fear and utter exhaustion at the whole ordeal.
When the doctor came back in the room, he sat in a chair by the door, and the shadow of the curtain fell over him making it look like we were in an episode of Tales from the Cryptkeeper. He said the scan showed a large mass on my pancreas. “FUCK!” I said to myself, at least I think it was just to myself. My first question was if it’s cancer. As a medical world junkie, I knew pancreatic cancer is a grim diagnosis, often discovered too late to be treated effectively.
“I don’t know,” the doctor said. He explained he’d been on the phone with a hepatobiliary surgeon who said there is a particular type of tumor that young women in their teens and twenties get that often isn’t cancerous, but we wouldn’t know until it was out. As scary as this all still was, this was comforting to me as it meant there’s a chance it was ANYTHING other than cancer. I’m not a religious person, but I remember this whole night pleading to some higher power for it to be anything other than cancer. “I’ll never eat sugar again if it’s not cancer!” I said to this higher power as if wagering had anything to do with it.
The doctor patted my foot and told me I was lucky because the surgeon he spoke to happened to have a clinic the next day, and I would be able to see him then. My appointment was only about 12 hours later, and I am still so thankful this was all able to go so quickly.
Holding My Breath
I was high on morphine for the pain through all of this, and then on a whole bunch of anti-nausea meds to deal with the morphine side-effects, so I was very loopy at times, but had moments of total lucidity. I was oddly calm about everything going on, and didn’t dive into a panic mode. My mom drove me home and came in to sleep with me because she didn’t want me sleeping alone. My dad and brother were waiting in my living room when I got home (about 3 am) and they both looked concerned, which naturally made me feel concerned too, but I mostly worried about them being sad. They hugged me a lot and I recall thinking “This is nice,” but I knew if I let myself, the tears would start coming and not stop. So I went up to bed, and fell asleep surprisingly fast.
We met with the surgeon the next day, and he thoroughly explained my CT scan images to us and went over the surgery I would need. As soon as I heard “Whipple surgery,” I thought of Grey’s Anatomy and how people always die from the surgery on the show. Grrreeaaaat.
(Interesting tidbit: my surgeon appointment was on a Thursday, and that very night there was an episode of Grey’s about a pregnant woman with pancreatic cancer who needed the Whipple)
The tumor was most likely what’s known as a solid pseudo-papillary (SPT) tumor or Frantz’s tumor. He said the tumor was well-encased and he suspected it was benign. News of the tumor was the worst news, but hearing the surgeon thinks it’s benign is the best kind of worst news you can get. However, because of the pain it was causing, its sheer size (the size of a baseball), and the issues arising from all the surrounding organs and structures it pushed on, not to mention its potential to become cancerous if it wasn’t already, it needed to come out.
We wouldn’t know for sure what the tumor was made up of until it was out, but hearing him say he believed it would be benign was comforting. He wanted to do my surgery soon, and this also meant I had to postpone my trip to London to see one of my lifelong best friends, Jena, which I had been so excited for. Up until the surgery, I really think I was more upset about missing my trip than anything else. Then, a week before my surgery, Donald Trump won the presidential election, and that was a whole new kind of sadness.
Surgery is Scheduled
My surgery was scheduled for November 15, 2016. I scoured Google for information on the Whipple surgery (even though you’ll find everyone tells you to stay off Google in situations like this). In my mind, knowing as much as I could about what was going to happen provided me with a small bit of control in the whole situation. Truthfully, of the hundreds of articles I read about the Whipple, nothing truly prepared me for what it would be like, but I’m thankful for that because I don’t think I would have slept a wink for the two weeks before the surgery if I’d known what I was in for.
I knew there would be pain, but from what I read, it’s very well managed in the hospital by an epidural you get before surgery, as well as other IV pain medications. I knew I’d wake up with a tube down my nose, and a long scar down the center of my abdomen, from just below my breastbone to the top of my belly button. I knew I’d wake up with less of a pancreas, less of my stomach, less small intestine, with no gallbladder or bile duct, and if all went accordingly, no more tumor. The tumor, by the way, is known as Toddrick.
A much less bloody representation of the before and after of the Whipple surgery
These were all things I knew, but what I didn’t know, or at least what I didn’t understand, was that I was about to be tested. Not tested in any small way like “when your dog wakes you up seven times in on night and is testing your patience” kind of way, but a “your body is about to be cut in half and sewed back together, literally, and the same thing will happen to your mind, figuratively,” kind of way. Noooo big deal.
The Morning Of
The morning of the surgery began with me having to chug two cups of apple juice at 4 AM, as part of some new protocol for increased healing after surgery. If you know me, you’d know the prospect of being up at 4 AM was almost as bleak as having a tumor. Almost. Once you check in as an inpatient, you’re taken to a series of different waiting areas until you’re finally near the operating room. I sat with my mom waiting for the nurses to get me and take me to the OR. When I finally had to go, I really didn’t want to let go of my mom, and I’m sure she felt the same. They have you walk yourself into the OR, perhaps as some way of giving you control in a situation where you’re otherwise powerless.
Getting one last round of candy crush in before surgery
The OR was a lot bigger than I had imagined, and I was disappointed not to see a gallery with the cast of Grey’s Anatomy watching me from above (actually, with Grey’s luck with the Whipple this was for the best). The nurses were all sweet, and I recall them asking me things about myself, but I don’t remember what. I had to hunch forward and lean on a nurse’s shoulder while I had the epidural put in my spine and I remember thinking “But we just met.”
Of course, I was minutes away from them seeing me from the inside out (literally), so leaning on a random nurse’s shoulder isn’t nearly as intimate as it seemed to me then. I remember laying down once the epidural was in and the anesthesiologist adjusting my ponytail, but I don’t remember them ever telling me I was about to go to sleep.
The next thing I knew, a nurse with a soft voice and short blonde hair was waking me up. The first thing I thought was she reminded me of my best friend, Kayley. And this was incredibly comforting to me even though I was still completely out of it and not really sure what was happening. I don’t know how long it lasted, but I know I was in and out of sleep several times, only waking up to tell my nurse how nauseous I was, or crying because of the pain in my abdomen.
I recall two nurses looking at each other concerned when I insisted I was in a lot of pain because the pain I was feeling at this point was supposed to be managed by the epidural. They had me roll to one side to check if my epidural had somehow fallen out (it hadn’t), and the pain was indescribable. I specifically remember thinking “I can’t do this.” But there’s that little voice of reason in the back of your head reminding you that you don’t have a choice. When I was finally taken to the high observation unit (standard for the first few nights after a Whipple), I got to see my parents, and I remember being overcome with happiness at the sight of them and how it made my eyes fill with tears.
The next two days are a blur (including sweet visitors whose visits I don’t remember at all), marked with prominent moments of clarity and some memories I’ll never forget. In the bed beside me was an old man who was hallucinating, moaning, and screaming constantly. It’s basically what I imagine the soundtrack in hell to be.
During this time, we found out the reason I was in so much pain is my epidural went up my spine, rather than down. So, instead of numbing my midsection, my chest was completely frozen. Once the epidural is in, it couldn’t be redone because I didn’t have the physical ability to hunch over again to have it fixed. The pain team would try several different medications over the next two weeks to try to pick up the slack from the misplaced epidural. I was in excruciating pain I can best describe as feeling like my ribs were being pulled apart and that my stomach was filled with fire. I poured sweat constantly, soaking through the sheets and my hospital gown, but I was always freezing cold and couldn’t find any comfort.
The tube down my nose and throat had left my throat so sore I had to use hand signals to communicate when I needed to suck on a wet sponge or an ice chip. I had a fan in my room that I would sometimes request to be blowing right in my face, then 30 seconds later I would be shaking so hard from cold it felt like my teeth might break.
My mom has a video of me sleeping with my eyes rolling back in my head while I talk about the beautiful sunset (in the middle of the night). I was hallucinating from the pain medication so anytime I closed my eyes I would hear 100 voices whispering my name over and over again like a horror movie. Any noise would set me off, and I felt like I could hear the walls breathe. I continually tried to focus on counting to ten.
I told myself you just need to get through these ten seconds, over and over and over again.
It’s hard to talk about pain and not feel like you’re complaining or exaggerating, and I can’t help but feel like it’s almost useless to try and describe the pain because unless it’s happened to you, it isn’t understandable. I also hesitated to talk about the pain because if you’re reading this and you’re preparing to undergo a Whipple procedure, it will do the opposite of comfort you. But please keep in mind it is rare for the epidural to fail as it did me, and you will likely have much better luck! But even if you don’t, you’ll get through it, because if I can, I know you can, too. (After all, I AM a “delicate flower,” as my dad says)
Having a fentanyl-induced snooze
One of the most sobering moments of this whole experience happened on the second day after surgery. I felt pain I didn’t think was physically possible to withstand if you weren’t dying, and I became convinced I WAS dying. I was sure there is no way you could feel how I felt and NOT be dying. My mom stood at the end of my bed, and when a nurse was checking my vitals, I asked her if I was dying. “Please, just tell me,” I begged her. I KNEW I was dying, and when I saw my mom tear up when I asked, I took it as further confirmation of my impending death.
Of course, it sounds totally dramatic to assume you’re dying when you’re sick or in pain, but this was unlike anything I could have imagined. There was no relief, no moments of reprieve where I could remind myself I would get through this, so when the nurse answered “No,” I thought “Well, of course they’re not going to admit it if I’m dying.”
One of my first walks after surgery. I was warned how difficult (but important) these walks were after surgery, and boy, they weren’t kidding.
I finally began to have a few moments in the days where I would be a little more clear-headed as I came out of the surgical anesthetic. I was constantly comforted by my sweet mom, dad, and brother who made sure someone was with me all the time. This meant them sleeping in chairs beside my bed, and tending to my every need. I was completely helpless at this point, and I can’t begin to imagine how taxing this would be on them. I thought of any of them being in this position and seeing them in that state and was grateful to be the sick one, rather than the witness and the caretaker.
On one particularly hard day, as I did a mandatory lap around the unit, dragging my IV pole, my mom by my side ready to catch me if I collapsed, I turned to her and told her I was okay with dying. “If I die now, it’s okay. I can’t do this anymore.” Not an easy thing for a mother to hear, and I immediately felt guilty for saying it when I saw her face, but truthfully, I was so not myself at this point, I really, really meant it. I remember looking at the window in my hospital room and thinking if I could get up by myself, I would jump out of it.
They trace the bleeding on your bandage after surgery to see how much it spreads. I was so lucky not to have any infections or issues with my incision and staples.
My scar a few months after surgery
These thoughts are so dark I hesitated to share them as well, but they’re an important part of my story. Recalling these dark moments symbolizes the body and mind’s incredible ability to come back from the deepest despair and pain. It’s hard to admit to ever reaching a place so low, and I’m not proud of it, but it serves a purpose. You can have these moments that for you, are the lowest of low, where not only do you feel as though you’re dying, but in fact, hope you are because dying seems better than the reality you’re in, and come back from them. You can come back from those dark moments and find yourself laying on the couch, snuggled with your dog, writing about your experience and realizing how far you’ve come and how strong you are. And instead of focusing on the pain you were in, the pain you’re still in, and the struggles you continue to face, your most overwhelming feeling can be GRATITUDE.
Comparison may be the thief of joy, but it can also be the supplier of gratitude.
Hear me out.
When you’re at your lowest, you can look to people you assume to be “above” you, as in they somehow have it better than you. You might do this when you’re lamenting about the size and shape of your thighs, comparing them to those of a model, or looking at your little home and focusing on how much you wish you lived in your friend’s bigger house. But, if you choose to, and yes, it’s absolutely a choice, you can use comparison in an entirely different way.
You can tell yourself “My legs, whatever size they may be, work and propel my body through life when some people rely on a chair to do so.” Instead of coveting your friend’s bigger house, you can think, “Damn, I’m lucky to have a home at all.” Don’t get me wrong, just because someone has it worse than you, doesn’t mean you’re not allowed to think your circumstances are utterly shitty. You can feel sorry for yourself, cry yourself to sleep, and let comparison steal your joy – I am certainly guilty of all three – but for your own well-being, you can try to find something to be grateful for in any situation.
I think of children and babies given horrible diagnoses who undergo intensive operations and treatments, who have no idea what’s going on other than they’re in pain. They haven’t had 27 years to live a wonderful life like I have. I think of all the people who are diagnosed with pancreatic tumors with a far less favorable prognosis than mine who have to undergo chemo and radiation in addition to having the Whipple surgery.
I think of people who lose their parents, siblings, and friends to cruel diseases. I think of people without access to world class medical care whose tumor diagnosis (if they were ever even able to receive a diagnosis) is a death sentence right off the bat. I think of those being treated in hospitals that are unclean, understaffed, and lacking necessary supplies.
As much as I found the hospital bed I spent two weeks in horribly uncomfortable, I was lucky to have a bed at all, let alone a bed in a clean, well-stocked hospital with a team of surgeons and nurses devoted to my care. I think of people without family or friends around to care for them and support them. My friends have showered me with love and support, sending check-in texts, gifts, and good thoughts, and have been so patient with me as I try to adjust to my new normal.
My family has never left my side through all of this. They have held me up, literally and physically, when I couldn’t do it myself and bent over backward to bring any shred of peace, comfort, or ease to my life that they possibly could. They “slept” in chairs by my bedside, holding my hand and trying to comfort me however they could as they watched, feeling helpless, as I cried in pain. They weren’t helpless, though; their utter presence provided me with more comfort than I could ever express and I won’t forget for a second how lucky I am to have them.
Time Goes By
It’s been a couple of months since surgery now, and I received the amazing news that my tumor was fully excised and all of my lymph nodes and tissue samples were NEGATIVE for malignancy. Whipple surgery is still a part of my everyday life, and there likely won’t ever be a day that goes by without thinking about what I’ve been through. The long scar down my stomach isn’t the only constant reminder I have of my experience: I can’t eat the same foods I used to, I’m often too weak to do simple things like making it up the stairs, I’ve had agonizing bouts of pancreatitis, I always feel like I’ve just had the hardest ab workout ever as my muscles and my organs try to put themselves back together, and I’m nauseous for a large portion of every day. My new normal is having less stamina than a 90-year old, and learning to adapt to the changes in my body and how I live my life because of it. But my new normal is also looking around every day and thinking, “Wow, I’m lucky just to be here.” There’s a certain type of gratitude that I could never have felt had it not been for reaching such a low point in my life. This experience has gifted me the insight that not every day is a given, and nothing should be taken for granted. I know, I know, you’re rolling your eyes, but amidst your eye rolling, I hope you find yourself discovering gratitude in some part of your life you hadn’t before.
For example, you can now be grateful this long winded article is finally coming to an end!
Thank-you so much for taking the time to read this, and to anyone who has taken the time to send any kind of love or light my way, I truly feel it and it means the world to me.
xoxo – Chelsea
For more information about the Whipple procedure, as well as other resources for those with pancreatic illnesses, click here.