2015 was a year full of medical complications for me. Not that 2016 has been any different, but at least this year, there are less unknowns. In 2015, I faced pancreatic pseudocysts, persistent biliary strictures leading to jaundice (that went undiagnosed for too long), increased pancreas pain, four ERCPs (endoscopic retrograde cholangiopancreatography), and hospitalization from what looked like liver abscesses. After that week in the hospital in November, I went on heavy-duty antibiotics for about seven weeks. Once that course was finished and Infectious Diseases declared me highly likely to be infection-free but a CT scan showed that the spots on my liver had grown, my gastroenterology surgeon, Dr. Hirose, decided it was time for a biopsy. That liver biopsy was a traumatic experience in and of itself (one that deserves its own post).
During the week I waited for my biopsy results, I was lost in a miasma of fear. Anyone who has waited for biopsy results knows the feeling. For me in particular, there was a sharper, somehow more personal fear than if I had been in danger of any other kind of cancer. For example, if I had been waiting for biopsy results for possible skin cancer, I would have felt very differently than I felt waiting for biopsy results for possible pancreatic cancer. Of course, we didn’t know at the time what type of cancer it could be if it was cancer, but all signs pointed toward pancreatic cancer. Also throughout 2015, I had been in consultation for total pancreatectomy surgery at Johns Hopkins’ special clinic for this procedure, where Dr. Singh explained to me my theoretical risk of pancreatic cancer.
Patients with SPINK1 hereditary pancreatitis are known to have increased risk of developing pancreatic cancer. However, the particular risk for different genetic markers of hereditary pancreatitis is not always known. While there has been enough research on the PRSS1 mutation to know that it carries a very high lifetime risk of pancreatic cancer, there is not yet enough data to quantify the cancer risk for my mutation, PN34S. I think I remember Dr. Singh saying, as he literally sketched out these complex ideas on the paper exam table cover, that my lifetime pancreatic cancer risk was likely somewhere between 4% and 60%. This is a huge and vague range, but the numbers were concrete enough to bring the idea home to me: there was a very good chance I would develop pancreatic cancer at some point in my life. That’s why I was determined to pursue total pancreatectomy, my only chance of eliminating that risk. There was no way to know at the time that my risk was actually 100%. It’s even possible that I already had pancreatic cancer when Dr. Singh and I were discussing my risk in abstract terms.
So after my liver biopsy, I sat in waiting for a very personal, very real fear to come true: that my pancreas, which had literally sickened me for so long, could turn so very ominous. Since my diagnosis with pancreatitis at age nine, I have had a very complex relationship with my pancreas. It’s not even a love-hate relationship, which would make sense given the circumstances. Rather, it’s something more like a vaguely confused attachment. I’m sure people expect me to hate my pancreas, or at least to wish it gone. While I have certainly wanted it out of my body for over a year now, that desire has always had to push past my deep connection to my pancreas. Childhood illness has taught me to respect and value all parts of my body, because each organ and gland really does do incredible work every day to keep me alive and functioning. But the gland I feel the deepest attachment to will always be my pancreas. We are in this together, she and I.
But for that week of waiting in January 2016, I couldn’t quite stomach the idea that my pancreas would do something so horrible to me. It felt like a betrayal, and I didn’t want to think that my beloved partner organ could go rogue in such a big way. I thought I had tried to care for her, but now I wondered whether I had taken her for granted, or unwittingly thrown too much difficulty her way. Maybe my eight and a half years without pancreatitis symptoms (which had ended sometime in 2014) had left me lazy. Maybe my recent paleo diet had funneled too much fat through my gut to my beleaguered pancreas. Maybe I hadn’t thought of her enough lately, so she had retaliated. I’ve read enough cancer memoirs already to know that I wasn’t alone in feeling this kind of searching regret and bodily guilt.
More than anything, though, I didn’t want to follow my pancreas down this new road. I felt she was trying to lead me into a long and dark underground tunnel that I might never escape from. And I’m claustrophobic. At times I felt angry, thinking how dare she try to hurt me so much, how dare she try to pull rank. At other times I felt helpless, dwarfed in the shadow of my all-powerful pancreas. As it turns out, she just might hate me as much as I love her. She may have had it in for me all along. Or maybe she’s just as desperate to stay alive as the rest of me is.
Most of the time now, in spite of her supreme power to rule my life and health, I like to be sweet and gentle to her, to imagine her shriveled and shaking inside my upper abdomen, nestled against the back wall, just trying to make it.
This morning I woke up with a narcotics hangover: migraine, nausea, and the roaring return of the same exact pain. Maybe I shouldn't have done the celiac plexus block last Thursday, because that was supposed to reduce or eliminate my pain, but I've had continuous pain since immediately after the procedure. Maybe this pain now, my usual dull ache pancreas pain accompanied by sharp pains down the left side of my abdomen, is all from my enlarged spleen. My spleen: holding onto platelets and making me ache, the little sneak. Maybe it's all brought on my stress, and that's all my fault right now. Maybe if I meditated more or stopped freaking out about the future so much, pain wouldn't rear its ugly head so much.
Well, the truth is that today, I have no idea what I'm doing with my life (or what's left of it). I found out yesterday that I didn't get a new job I thought I deserved, but that I might have a very good chance at the next opportunity (for a lateral move with full-time hours, not a promotion or any position that actually uses my master's degree). Then I wonder, from in the middle of all this recent pain, whether I can really do full-time work while I'm still actively in treatment. Chemo takes a lot of time. For me, it's at least 5 hours every Monday afternoon for 2 weeks on, 1 week off. Then it's the infusion recovery, when I feel like shit and can't focus on much (so often don't make it to work), for at least a full day after infusion. Then, of course, I still have to take my chemo pills, morning and evening, every day for those 2 weeks on. Those aren't so awful, but they still drag me down.
And now if I need some kind of interventional radiology procedure (to "shunt" part of my enlarged spleen so it will release more platelets and boost my natural platelet count, or something like that), that will take at least a day, plus possibly another day for recovery, if it's as painful and traumatizing as my liver biopsy was (also done by interventional radiology). Seriously, their jobs must be the worst, because they basically stab sick people who are still awake. All you get is local anesthesia, then they come at you with an ultrasound wand and vicious needles. Only after doing this procedure and testing my blood counts again to be sure it worked, can I go back to chemo to continue my treatment. In the meantime, who knows how much pain I'll have to live with?
So should I even be trying to get a new job in the first place? Should I just sit tight where I am, focus on doing that job well, and leave myself plenty of time for self-care and treatment appointments and recovery time? It's true, cancer is a full-time job. Or at least a part-time one I'm trying to work in around my real part-time job. And all of this is so exhausting and demoralizing that after a while I just want to curl up in a ball and make somebody A) Take my cancer away and B) Make decisions about my life for me. And even after that, I'd probably still wonder whether anytime I'm spending time on (work, household misc., etc.) actually means anything valuable at all when I have a possibly terminal disease, on top of two other chronic illnesses.
This time, instead of curling into said ball, I decided to take a little drive to my favorite part of Baltimore, Hampden. I went to the shop my husband and I always walk through, more for old times' sake than for actual shopping. (This time, though, I did need a nice birthday card for him.) And I happened upon some silly little tchotchkes for sick people (in the get-well-soon greeting card and gift section of the store):
I ended up not buying any of these delightful little things, but now that I'm home and I've looked up their websites, I definitely respect what they do. Maybe I'll go back and get these, despite my initial misgivings. The little crossed fingers pin really hit me at the right moment. I was feeling so down and lost, so unsure of what I'm even doing with my life. At those times, it's helpful to see a reminder of that age-old convention: "things will work out fine." Then I thought to myself, ever practical, where will I even pin this? Will I ever wear it? (For $11?) Then my darker side kicked in and I wondered, do they really, the things? Will things really work out? Honestly, I don't know, and no one does. That's part of life as we know it. But maybe I don't need a constant reminder that I have zero control over my own future, and that blind faith in my idealistic dreams is exactly that: blind faith.
I was definitely happy to see any representation of a pancreas anywhere, but this keychain one is maybe a little too doofy and spiky at the same time. The liver pin is pretty great, though. If I worked in health care, I'd definitely wear these. I might wear them to PANCAN events. I don't think I'd wear them at work, next to my name badge. But that just might be because I'm not ready to invite conversation about my cancer with coworkers or members of the general public (I work in a public library). And I like the chemo IV bag decals, and really appreciate the story behind them, but I'm not sure that the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins would allow me to put stickers on my IV bags during chemo infusion. But, something like this sweet little felt brooch from yourorgangrinder on Etsy, yes, this I could get behind:
I have hereditary pancreatitis, with the SPINK 1 PN34S mutation, pancreas divisum and a history of pseudocysts. This is also sometimes referred to as chronic calcific pancreatitis. I now know that I have had this disease my whole life, but it first presented when I was nine, with an attack of acute pancreatitis.
After many years of treatment, various phases of illness, and nearly nine years of no symptoms whatsoever, I developed LADA, latent autoimmune diabetes in adults, or type 1 1/2 diabetes (which essentially acts like type 1). I am insulin dependent and have successfully managed my diabetes with an insulin pump and continuous glucose monitor (CGM) for a year and a half.
Over the past year, my chronic pancreatitis symptoms have returned, along with several new complications. I had new symptomatic pseudocysts in early 2015, which were successfully drained by endoscopy in June 2015. I developed a biliary stricture and jaundice later in the summer, and had three endoscopies with stent placement to address these complications in my common bile duct. In November 2015, I was hospitalized for a week with what looked like abscesses in my liver.
Also during summer 2015, I started evaluations for total pancreatectomy surgery at Johns Hopkins Hospital. This was clearly the best treatment option available to me, since it would have been the only way to successfully remove all of my genetic disease and mechanical malfunctions. Since it is such major surgery, my doctors and I felt there was no rush and planned to do the surgery in summer 2016. Unfortunately, in January 2016, we discovered that what we thought were abscesses in my liver are actually malignant tumors, and because of this and vein compression in my abdomen (making surgery extremely risky), total pancreatectomy is currently not an option for me.
On January 19, 2016, I found out that I have adenocarcinoma in my liver. I was referred to the Pancreas Multidisciplinary Cancer Clinic at the Kimmel Cancer Center at Hopkins. On Tuesday, January 26, I had a full evaluation and treatment plan consultation with my new oncology team. They diagnosed me with stage IV metastatic pancreatic cancer. Fortunately, my only metastases are five tumors in my liver. There is one tumor in the head of my pancreas, in the center of a cluster of non-cancerous pseudocysts. I also have peritoneal carcinomatosis, or the spread of cancer cells to the abdominal lining (which is common in all GI cancers). It appears that none of my tumors are particularly large.
My only treatment option to start is chemotherapy, because I need to attack the metastatic cancer systemically before trying any other treatment like immunotherapy or radiation. Fortunately, my doctors started me on a low-dose chemotherapy regimen, GTX-C (Gemcitabine, Taxotere, Xeloda, and Cisplatin), rather than the aggressive FOLFIRINOX chemo more commonly used to treat pancreatic cancer. Even more fortunately, GTX-C is working incredibly well. After only five rounds of chemo, my tumor marker number (a blood test that measures total active cancer cells in the body) dropped from 385 to 31 (the normal range is 0-36). I will continue on GTX-C as long as it is working and as long as I’m tolerating it.
My doctors won’t say for sure, but I suspect that I will only be able to stop chemo if my CT scans show that the tumors have disappeared. Even while cancer cells are dying off from chemo, it takes a while for the immune system to metabolize and reabsorb tumor cells. I might be a candidate for immunotherapy clinical trials in the future, after finishing chemo. There is also a small chance that I might be able to do surgery in the future, if my abdominal vein compression changes or if my tumors, pseudocysts, and inflammation reduce enough. At this point, though, I am in extended, low-dose chemotherapy treatment, managing my cancer as a chronic illness.