Tuesday, January 19, 2016

Happy Whippleversary to Me

One year ago today I underwent an 11 hour surgery to remove a 9.5 cm tumor from the head of my pancreas. Those of us who have had The Whipple call these anniversaries "Whippleversaries." So, happy Whippleversary to me. I remember that day all too clearly (except the 11 hours I was anesthetized, of course). I remember the drive to the hospital, checking in, and waiting in the waiting area. I remember the awkward prep for surgery, I remember the surgical nurse telling my husband Chris it was OK to kiss me before I went into the operating room, I remember getting an epidural. If you've ever been "out" by way of anesthesia (the "black magic of medicine," as so named by my BFF), you know that time passes in an instant (or it does for me anyway). So after the epidural I remember waking up, being extubated (they took out my breathing tube /respirator), and being wheeled to my room in surgical ICU. I remember seeing my husband, Chris, who seemed giddy to see me and couldn't stop saying how good I looked, which was funny to me because I had never felt more terrible. I remember my surgeon came to see me in recovery with an imprint of the mask on his forehead from looking through the DaVinci robot to operate on my insides for hours on end. I was freezing cold, and my surgeon called me a "popsicle" in his soothing Italian accent. My father and stepmom (who had been there all day, too) came in to see me.  They told me they loved me and they'd be back the next day. I remember telling my husband that no, he should not spend the night, our kids needed him more than I did. I remember spending a long night (mostly awake) listening to the sounds of the ICU.

Thankfully, the next couple of days passed in a blur of sleep and pain meds. I remember more than I'd like to, but I'm indeed thankful for what I forgot. Apparently I had a concerningly high heart rate that was feared to be a pulmonary embolism or a blood clot somewhere else. I did not. But they put me on blood thinners that may have slowed my recovery. I'm OK with that, as I left the hospital 2 weeks later without having faced a serious complication.

I can't say I'm thankful for the experience. I'm thankful to be alive and tumor free, I'm thankful that the Whipple surgery exists, I'm thankful to have been eligible for surgery, I'm thankful for my surgeon, and I'm thankful for my seemingly hundreds of doctors and nurses (realistically, I had tens of doctors and nurses) who managed my care. So, I'm thankful for so much, but that surgery sucked. I've been told that all surgeries suck, which I now willingly believe without the necessity of experience.

For many people who undergo the Whipple, the surgery is just one step of their care. Many people face chemo or radiation before or after or before and after surgery. My tumor did not require such adjuvant therapies. I am thankful for that.

I am thankful for so much. For family and friends who visited me, who washed my hair and rubbed my feet, who talked to me when I wasn't dozing in and out of sleep and who just sat in the room with me so I wasn't alone. I'm thankful for everyone who sent me well wishes and prayers and fed my family.

Maybe the day will arrive when I can say that I'm specifically thankful for having had the experience of the Whipple, but for now I'll be thankful for the positive effects of the Whipple (no tumor) and everything else positive that surrounded that surgery and recovery. I'd like to think I could have learned the life lessons I learned with a gentler experience. But for now, that's the best I can do.

Happy Whippleversary to me, the first of hopefully tens of Whippleversaries.

Saturday, January 9, 2016

Anniversaries (part 2)

A year ago today I received what was probably the most traumatic news of my tumor experience. The news that I had a mass in my pancreas that was probably a tumor three weeks prior was also pretty traumatic, but I would place it at a close second.

In mid-December I had a CT scan that revealed something amiss (a.k.a. a large mass) in my pancreas. The next day, a Wednesday, my GI Dr. Bansal told me about my probable pancreatic tumor in an incredibly gentle way; I'm still in awe over his bedside manner. That Friday Dr. Bansal performed an EGD (in the simplest terms, he stuck a thin camera down my throat while I was under anesthesia and looked around and took a few biopsies, or samples of cells). I knew I would have another EGD in a few weeks (January 9th, 2015, to be specific) that would reveal much more diagnostic information. The first EGD revealed nothing unexpected, and we all got to see the bulge of the alleged tumor from inside my stomach via camera. No wonder I didn't feel good. The tumor had not grown into my stomach, so that was good, but beyond that, we would have to wait until a biopsy of the actual tumor (and not just the lining of my stomach) could be performed.

In order to biopsy the actual tumor, I needed an endoscopic ultrasound (EUS) with fine needle aspiration (FNA). So, to simplify, an ultrasound machine was stuck down my throat along with that camera, and they biopsied the tumor using a needle by way of my small intestine (the ultrasound allowed them to see the mass so they could accurately obtain a biopsy). January 9th was a date I awaited with a fair amount of nervousness, but also looked forward to for the relief of information. Dr. Chi, the GI who performed the EUS/FNA at Lutheran General Hospital, was optimistic that the assumed pancreatic tumor was actually a cyst, and best case scenario, may have been treatable without surgical intervention. So, January 9th we would get more information.

I arrived at the hospital with a crazy high heart rate (nerves), and I was looking forward to the nothingness of the required anesthesia so I'd wake up to hopefully good news. My poor husband had to endure the wait of my procedure awake. After my procedure, I was visited by Dr. Chi. We did not get the good news we were hoping for. The mass was definitely a tumor. A big one. He gave us differential diagnoses, or several types of tumors the biopsy may reveal. He said it was most likely a pseudopapillary tumor, followed by a neuroendocrine tumor (the Steve Jobs variety of pancreatic tumor), followed by adenocarcinoma (the Patrick Swayze variety of pancreatic tumor), a highly deadly (and the most common) form of pancreatic cancer. Reflecting upon this crappy experience, my husband said that he had never seen a doctor give bad news before. It sucked. It's difficult to say something positive about the experience. I learned from it, surely, but it simply was awful.

What did I learn? When something is wrong with your body, it is difficult to say the least. Dealing with the unknown is tough, dealing with the possibility of being diagnosed with a highly deadly cancer is downright traumatizing. I learned to never minimize what someone else is going through. Don't compare your awful to someone else's awful. For the individual, it is a personal and difficult experience. Hearing that it's going to be OK or that it could be worse really isn't that helpful to the one suffering. I said those things numerous times during my tumor experience, mostly to make other people feel better. The most comforting things people said were honestly the people in my who acknowledged how awful this was and they didn't try to minimize or overshadow what I was going through. So when someone tells me about their heartburn or depression or whatever, I listen and acknowledge how hard it is. I don't say, "well, at least you don't have 'x' going on." It's not helpful. It's just not.

This is not a particularly uplifting piece of writing. Last January 9th was not a particularly uplifting day. One year later, I'm fine, and on this day in 2015 I was 6 days shy of receiving relatively good news. But I hadn't received it yet, so I was feeling pretty low. Some of the people close to me might remember how uncontrollable crying spells would happen at unexpected times, like at work. I'm very thankful for my understanding coworkers and the social worker who sat with me and got me to at least stop crying. One year later I'm so thankful for a relatively indolent tumor and modern medicine. And while I'm not thankful for having a tumor in the first place, I'm thankful for what I learned. Never minimize what someone else is going through. We all have our moments of awful.