A Pain in the Neck

Exactly one month ago, I posted the news I received about a malignant tumor on my pancreas. Today I am one week out from my Whipple procedure. Post-pancreaticoduodenectomy, I have no gall bladder, 16 fewer lymph nodes, a little bit less stomach and duodenem—and, of course, no more tumor.

I have been meaning to post an update, but everything has happened pretty quickly. As the February 17 surgery date approached, I was also doing the much-too-familiar rushing to a stop before a hospital stay, and trying to finish everything I could before having to rest—cleaning, social outings, work, freelance projects, working out. So many times I wanted to sit down and write to help me process what was happening, but I felt like every waking moment was booked. On my first full day back from the hospital and reunited with my laptop, I finally have time for an update. I’m sure I’ll have more ramblings as I impatiently await full recovery, but here’s the rundown on what’s happened in the past month.

After the findings of the endoscopy, I met with a surgeon at NYU Langone and one at Memorial Sloan-Kettering Cancer Center. Dr. Elliott Newman at NYU went over the endoscopy results, which showed the tumor blocking my pancreatic duct, thus causing the backup of digestive enzymes and recurrent pancreatitis attacks and inflammation. Though the biopsy didn’t determine if it were a neuroendocrine tumor or an acinar cell carcinoma, the treatment would be the same: Removal of tumor (along with the gall bladder, part of the stomach and a bit of intestines) with a surgery called a Whipple procedure. Since the tumor was in the head of the pancreas, where are lot of ducts intersect, it’s not as simple as removing the tumor, and there’s rerouting and reattaching. Dr. Peter Allen at MSKCC also said that I would need a Whipple and the type of tumor it was would be determined after taking it out. The only reason to do another endoscopy and biopsy would be if I wanted to put off the surgery for a few months. The doctors put my mind at ease about one thing—removal of the tumor didn’t seem really urgent. In fact, they said that a small tumor, less than 2 centimeters in diameter, would often just be watched, but this was clearly causing me problems and pancreatitis attacks.

NYU Langone had my pancreatitis and endoscopy records and MSKCC had my oncology records so I had to choose between the two. I feel as if I would have been in equally capable hands either way, and having the choice between two such reputable institutions isn’t a bad dilemma to have. Ultimately I decided on MSKCC because Dr. Allen could do the Whipple soon (even a week earlier, had I chosen that date, but that seemed too soon), and I was already very familiar, of course, with Sloan-Kettering. I had also used my current insurance with MSKCC and NYU’s billing system seemed a just little less clear and quick to go to collections. At least in my case, I have had more billing headaches with NYU.

Transferring medical records from one hospital to another is also an enormous pain—one that involved multiple phone calls, faxing, a $45 slide fee to get my biopsy results from NYU, a trip to the doctor’s office to get records that weren’t even what the other office needed. In the end, I was so equally annoyed with both, it didn’t factor into my decision.

I tentatively scheduled my surgery for the 17th, and I had pre-surgical testing the Friday before. I needed to reschedule my lymphoma follow-up CT scan from Feb. 22, so I moved it up earlier. If they found the Hodgkin’s lymphoma was back, they would have to treat that first, and everything would have to be rescheduled, so I didn’t really have an all-clear for the surgery until I got the results on Feb. 8. The good news is that my Hodgkin’s lymphoma is still at bay. If I didn’t have the pancreatic tumor, I would be given the green light to move ahead with my life without scans. From the lymphoma perspective, I am done, but this pancreatic tumor means I won’t be done with abdominal scans any time soon.

I had been having lower abdominal pain, and became convinced that if I could harbor two types of cancer at once, why not three? I scheduled my annual women’s wellness checkup that I had been putting off because of my insurance’s refusal to pay for some test they deemed superfluous (because if there’s one thing women love to do, it’s taking unnecessary pelvic exam tests so we can charge insurance companies, right ladies?) and then had to take a follow-up ultrasound. By that Wednesday, as I awaited my ultrasound and my follow-up lymphoma CT, somewhat convinced that I was probably teeming with cancer, I was in a pretty dark place. Oddly, once I was cleared after the ultrasound and CT, I felt celebratory that I had just one type of cancer.

In those weeks, I also wanted to take care of some other things I’d been putting off, like going to the dentist and getting new glasses and contacts. (On another happy note: I have spiffy new contacts that are a meld of hard and soft lenses so I can see details for the first time in years.)

Whereas the stem cell transplant was months of preparation, with the Brentuximab trial, the ICE treatments and the stem cell collection, the lead-up to surgery was really fast. In a way, this was good—I didn’t want to have too much time to think about it. I did my share of freaking out and worrying just within a month, but I was also so busy, I didn’t have much time to dwell on anything.

I had actually considered putting off the surgery for a month or two until a big work project was finished and until I could go home for my mom’s other hip replacement surgery. I had been urging her to have the other hip replaced as soon as possible when she went to her scheduled February follow-up doctor’s appointment, because I know it has been really bothering her. It felt selfish to have my surgery first, with its 6–8 weeks of recovery time. But I didn’t want to have to do another endoscopy to check the tumor and my pancreas has been bothering me—a lot. I haven’t been 100 percent comfortable since the beginning of October, when this all started. Some days I worried I should go home first and take care of my mom, and other days, when my pancreas sent out twinges of pain all day, I would have gladly opted for surgery immediately if possible. The Thursday before surgery, my pancreas hurt all day and I stood in the kitchen after breakfast holding my yogurt spoon, thinking that if I could scoop out my pancreas tumor right then and there, I would. I ended up getting some pain medication and going home early. An acute pancreatitis attack may have delayed surgery and so I thankfully made it through the weekend.

Wednesday finally arrived, and we got to the hospital at 5:45 am. The doctor asked if I was nervous, but I wasn’t. I was excited to get this out. It is weird, though, to know that you’re going to go under and then wake up sore with pieces of you missing. I’m pretty squeamish, so I don’t like to think about it. I got put under and in a few hours, my Whipple was done! The doctor told my boyfriend—and me, when I woke up—that the surgery went well, there was minimal bleeding and that even though the tumor was small (just about 2 centimeters at its widest point) the pancreas had been pretty inflamed. This was the first indication that it was a good decision to have my surgery sooner rather than later. (And that feeling vaguely sick for the past months hadn’t been all in my head.)

The second indication that a speedy surgery was the right decision came when the doctor talked to me about my pathology report before my release from the hospital yesterday. The tumor was a neuroendocrine tumor, as they initially thought. This is good news. However, it’s a well-differentiated tumor. I’m not sure what this means other than that it’s more likely to come back. The tumor had been increasing in size recently and becoming more aggressive; it had spread to one lymph node, out of the 16 removed. I’ll need to be monitored, with scans at least every four months for awhile. If it comes back, it will probably show up in the liver. I asked what I could do to prevent recurrence, and he said just to avoid smoking, which isn’t difficult.

The best part of my pathology report was the description of my gall bladder, which sounded magnificent: “green and purple” with a “smooth” surface that opened to “reveal an abundant amount of bile and a smooth velvety mucosa.” I’m a little sad about the loss of such a lovely organ.

Next week, I have a follow-up appointment, and I can ask some questions. Mainly, I am confused because if I have had it for so long, why did it suddenly become aggressive recently?

After I got home yesterday, I didn’t feel very celebratory, because I had hoped for the very best news—that recurrence was unlikely. I wanted to walk out of that hospital again and hope that I never had to spend a lot of time there. Also, now is the hard part on my end: Recovery. I spend a lot of time feeling blech, bloated and like the staples on my stomach are going to burst open like a piñata, releasing my remaining organs. I spend a lot of my time trying to pass gas and longing for smoothly working bowels, as my digestive system wakes up and learns how to work. I always feel like I’m in the middle of an ab crunch, and I constantly feel like I’m sitting wrong—either too far forward, or too far back. My back hurts. The skin around my staples is lumpy.

A friend texted yesterday to remind me that this is good news and very importantly, this is temporary. She’s right, of course. I’m happy that this pancreatic tumor is behind me and I’m looking forward to not always feel vaguely sick as I have for the past several months. Feeling better is just around the corner, and it is good to be home.