I don’t really think anything is ever black and white, completely good or completely bad. My latest CT scan, for example, was a mixed bag of news, even significant and insignificant. In a way, this helps me prepare for scans in general, if I believe that there won’t really be any extremes, or anything too shocking or groundbreaking. And then if there is, I get to be pleasantly surprised (or maybe unpleasantly blindsided, and I’ll cross that bridge if I come to it).
The bad news on my latest scan is that the FOLFIRINOX didn’t really work, all of my “drop metastases” grew, my pancreatic pseudocysts grew, and I have a small pulmonary embolism (a blood clot in my lower left lung). Also, according to my latest lab tests, my tumor marker number has risen again, to the 150’s. The good news is that my original tumors (pancreas and liver) are relatively stable, and my doctor thinks it’s time to try experimental treatment, which means immunotherapy.
Sometime last year, another CT scan revealed a few different bits and pieces of “worsening metastatic disease,” as my cancer grew and spread. I had and/or have ascites (extra fluid in the abdominal cavity), carcinomatosis (general systemic spread of carcinoma cancer cells), and “nodules,” or tiny little extra tumors floating around in my abdomen. Later on, these nodules started to land in various places and attach themselves to various parts of my insides. As of this latest scan, these nodules, now called “drop metastases” because they’ve literally dropped within my insides due to gravity, have all landed somewhere in my pelvic region, and they’ve all grown. One of these tumors is now 7.5cm in one direction (roughly the size of a clementine?) and is pressing on my bladder. Others are “likely ovarian metastases.” I don’t honestly know whether this means that I now have cancer in my ovaries, or if it’s just little bits of extra cancer on and around my reproductive organs, not necessarily affecting any organ function. Maybe I don’t really want a definitive answer to that question. Regardless, I’m not having any significant symptoms yet from any of these drop metastases, just occasional pelvic pain (like ovulation cramping, which most ladies will understand). And regardless, these extra little cancer bits are raising some complex psychological issues for me, the kinds of conflicting thoughts and worries that I imagine women with reproductive cancers face regularly. And also, I’ve had increased pancreas pain, probably from the growth in the pseudocysts (cystic lesions with a different density and makeup than typical cysts) surrounding my pancreas tumor.
All of that means that while the FOLFIRINOX chemo cocktail worked fine on my pancreas and liver tumors, it kind of did diddly squat on a systemic level, allowing these drop metastases to grow way too fast. So David and I crawled through hell four times (those four rounds of FOLFIRINOX), and for what? We’re still here, on the other side, at least.
The pulmonary embolism is a surprise. Apparently, though, this happens a lot with pancreatic cancer, which thickens the blood. Fortunately, this one is still quite small, which means we caught it early. The radiologist called my oncologist immediately after the scan, before my clinic appointment, to notify him, so that’s a bit alarming. My oncologist said that while it’s urgent and potentially life-threatening, it’s also very treatable. All I need to do is twice daily shots of heparin (an anticoagulant) for a month, then blood thinner pills for a while. I haven’t had any symptoms from it yet either, which is a good sign. Although now I find myself overthinking my usual breathing patterns, wondering if what I’m feeling any given moment is shortness of breath or not. So far, the shots are going fine. They were icky at first, like the Neupogen shots I’ve done before, with a thick needle on the syringe that doesn’t push into my belly skin very easily. But lately they seem to have gotten easier. I’m about halfway through my month of shots, and I look forward to the end of this chore every 12 hours, and even to the end of the twice daily reminders that pop up on my phone.
The positive outcome of this scan is that I finally get to try immunotherapy! I’ve been asking my oncologist about this every clinic visit, and he finally suggested it himself. Now is the right time, because I’ve tried a year of two different chemo regimens. While the first one was very successful initially, this traditional systemic treatment hasn’t been effective enough for me in general. Also, apparently in the last few months, the number of available immunotherapy clinical trials for pancreatic cancer has grown significantly, and there are several new ones at Johns Hopkins itself. David and I researched through the PANCAN clinical trials database and carefully considered our options (at a few Baltimore hospitals, as well as NIH in Bethesda, MD, Georgetown in DC, and Penn in Philadelphia). While we found one we really like at NIH (which I’d prefer to do first, for a variety of reasons), I wouldn’t qualify for our top choice trial at Hopkins if I did this NIH one first. So we decided to go for the Hopkins trial now, and my oncologist is coincidentally the principal investigator. I will hopefully start the screening and enrollment process this week, then start the actual treatment within two weeks from that date. Then it’ll be three weeks on, one week off, with a combination of immunotherapy pills (Palbociclib) and one short weekly chemo infusion (Abraxane). I was hoping to avoid any chemo for a while and do an immunotherapy-only trial, but it seems I might have trouble qualifying for those, because I already have an autoimmune condition, type 1 diabetes. So my hair might fall out again (in which case I think I’ll try out a wig), or it might continue to grow in, which would be a lovely surprise. (I almost have an even buzz cut of new growth now, with this break from treatment.) Fortunately, because I’ll be doing only one chemo drug (as opposed to three or four, as with my previous treatments), the side effects should be pretty manageable. Unfortunately, clinical trials are quite time-intensive and run on regimented schedules, so I won’t have the flexibility I’ve had so far, and I won’t be able to tailor my treatment schedule to my work schedule. We’ll see how it all works out.
So for now, we are cautiously optimistic. Immunotherapy is incredibly promising and exciting, the forefront of cancer research and the closest science has come to a cure. In fact, a good friend of mine who works in a cancer research lab and is currently taking a graduate course on advanced cancer biology, just told me yesterday about her professor’s astounding success treating APL leukemia. He’s achieving a 96% complete response (“no evidence of disease,” which is virtually a total cure) in his patients, treating them with high doses of vitamin A (the immunotherapy component) and tiny doses of arsenic (the systemic toxin, or chemotherapy component). These results are absolutely staggering, especially for a cancer that has been notoriously difficult to treat. Of course, all pancreatic cancer, and mine in particular, is generally resistant to treatment, and so far, researchers have not had the same success with immunotherapy for pancreatic cancer that they’ve had for other cancers. But my oncologist did say that research so far has shown that patients who are treated with both Palbociclib and Abraxane have better outcomes than those who are treated with either drug individually. It’s certainly worth a try.
As always, I’m consciously working on remaining mindful in the present moment, detaching myself from worries and expectations about the past or the future, and hoping for the best while preparing for the worst. This is the healthiest, most comfortable approach for me, so I’m sticking with it. One day at a time.
Today, Thursday, November 17, 2016, is World Pancreatic Cancer Day. As I continue to process the slew of changes and challenges that have come at me in the last month, I want to take a moment to recognize this day. A worldwide day of advocacy and action like this is dedicated to people like me, and it means a lot to know that so many around the world are working to make my life better. I know I'm thinking of all the other current pancreatic cancer patients, as well as the small but growing number of pancreatic cancer survivors, worldwide. We are a mighty community, united by intimate, painful, and even life-threatening knowledge of this little organ wedged behind our stomachs.
I will post again soon, and I've been working on several posts for a while now. I have reached what feels like a turning point in my "cancer journey," where everything takes on a new urgency, and all manner of difficult questions are thrown into stark relief. Everything is okay, though, because I am still here and I am still living my best life every day.
About a month ago, my latest CT scan revealed that all of my tumors are growing slightly. This means that the chemo regimen I was on since February, GTX-C, stopped working (because my cancer outsmarted it). So, I've started on a different chemo regimen, FOLFIRINOX, which is just as scary as it sounds. Fortunately, this is standard treatment for pancreatic cancer, and I've met survivors who went into remission thanks to FOLFIRINOX. I've only done one round on this treatment so far, and it was really tough. I think I'm prepared to better manage the side effects for my next round, the day after Thanksgiving. But each chemo infusion is a crapshoot, because the effects are cumulative and there are so many factors that determine how I feel any given day. I definitely have enormous respect for everyone out there who does high-dose chemotherapy on a regular schedule.
This all has me thinking a lot about my mortality. Some of these thoughts are terrifying and heartbreaking, and others are shockingly matter-of-fact. I recently read part of the cancer memoir Malignant: How Cancer Becomes Us, by S. Lochlann Jain. The author, an anthropologist and cancer survivor, expresses the unique limbo of a non-terminal cancer prognosis:
"How could something be at once so transparent (you will live or die)
She also expresses the bittersweet gratitude I've been feeling in huge quantities lately, this joy at the beauty of life in every moment that is so delightful precisely because I know there is a limit to my moments. I want always to be grateful for the moments I do have, even the bad ones, even the tough ones, even the painful ones. All of it is life.
"Each morning that I wake up not dead or sick,
Sometimes, when you have a chronic illness and you’re doing a pretty good job of living around it, living your life fully and well, it comes roaring back to remind you just how sick you are. In these times, simple things will become impossible, everything will hurt, and it will absolutely be too much to keep your eyes open. In these times, you will be unable to forget or ignore your illness.
I started back on chemo last week with infusion on Monday. Infusion went pretty well, and I wasn’t feeling too sickly when I left. Within a few hours, though, the nausea was hitting hard. For the first half of that night, I woke almost every half hour, sitting up in a panic as waves of nausea crashed over me. I’d lean forward over my bent legs, heaving and trying to catch my breath, until I could finally lie down again and immediately fall back asleep. Then, for the second half of the night, the nausea was like a constant wave and I couldn’t get back to sleep. It was like a demon inside me was trying to rip its way out through my esophagus, but another demon was holding it back, keeping it angry. I don’t know, that metaphor doesn’t make any sense. But I’m still very much in recovery right now, six days later.
I emailed my doctors Tuesday morning to see if they could suggest anything I could do. They advised me to go to the chemo urgent care center at Hopkins. This made sense, but I had to figure out how to get myself there. I called my parents to tell them I would drive myself downtown, but they urged me to call an Uber instead. (I’ve been wary of Uber so I’ve never tried it before, but I managed to create an account and call a ride through my stupor.) My grandparents drove up from Annapolis to meet me at the hospital, and they arrived right when I was called back into the chemo suite, after waiting in agony for a while.
In urgent care, they accessed my port and hooked me up to IV fluids, then gave me successive doses of Zofran, Ativan, and Phenergan, all of which did alleviate my nausea slightly. I’m not sure how many hours I spent there, because I was just sleeping in a haze of chills and medicine and the worst nausea of my life (and that’s saying something). My poor husband came straight to the hospital from his first day of the new school year (he’s a middle school teacher), brought me home and took care of me. The next day, I went back to urgent care for more of the same, and by the end of that day, I was finally feeling somewhat better. Or maybe not. I’m still so confused right now that I’m not a reliable narrator.
Since then, I’ve literally been sleeping and trying to eat, that’s it. And this takes all of my energy, in fact, more energy than I have. I’m at a constant deficit. But it’s so hard to eat, so so hard that I’ve lost probably six or seven pounds in just as many days. I can keep things down, because I seem to have lost the ability to vomit, sometime when I was a child, sick in the hospital. I used to dry heave so much then that we’d lose count of how many times in a day my stomach contracted on itself. Somewhere among all that, I think the valves closed off or something, and I’ve never been able to throw up since then. But now, it just causes me so much discomfort to eat, that I really have to force myself.
And I need to force myself, because I’m dangerously weak. I took a shower yesterday morning and almost passed out. The effort was so taxing, my body was so depleted, it was stunning. I know this is all very dramatic, but this has been one of the worst experiences my illness has caused in the last year. All I want to do is cry about it, but I don’t even have the energy for that. This all makes me feel pathetic. This makes me think I’m crazy for even trying to work, part-time or full-time. This makes me think, what if it’s like this after every chemo infusion? That’s impossible, I simply won’t do it. There has to be an alternative. I can’t live through this again.
Sometimes, when you have chronic illnesses, it is possible to escape your reality, just for a little while. Sometimes the stars align just enough for you to try something new, live fully, and lose yourself in an experience. In these moments, maybe even these days if you're really lucky, you forget about your illnesses for so long that you can almost believe they're gone.
This weekend, my husband and I went on a brief trip to Brooklyn. We stayed at a trendy hotel in Williamsburg, saw friends in and around the city, ate good food, enjoyed each other's company, and celebrated his birthday. Although certain aspects of my illnesses were present with me throughout the trip (like getting low blood sugar walking around in the heat Friday afternoon, or having to take pain pills each night because the unfamiliar bed hurt my pancreas), I almost felt normal. Even though we talked openly about my cancer and its harsh and boring realities with our friends, I also felt a little bit like my old self, my self before cancer. I could do things, I was capable and game, I was able to stay out late and have a really great time. These are not small accomplishments when you're living with three serious chronic illnesses.
And this respite came just in time, because tomorrow, on my husband's birthday, I am going into the hospital for a procedure that will probably lay me out for a week. Because of the chemo, my platelet count is persistently low, and is currently too low for me to continue my treatment. Also because of the chemo, my spleen is slightly enlarged, and apparently retaining the platelets I need to rebuild my blood count after chemo infusions. As I understand it, the bone marrow produces new blood, and the spleen and liver are stops along that blood's journey throughout your circulatory system. If the spleen gets irritated or inflamed, as mine is, then the new blood can't progress through it correctly. However, some doctors have discovered that certain spleen treatments that patients need in other cases happen to cause a dramatic increase in platelet count. So, this side effect for others is the intended result for me. This means the procedure I'm having isn't standard practice for cases like mine, but is rather a creative and alternative treatment my doctor can offer because he thinks outside the box of standard pancreatic cancer treatment. It's not a dangerous or experimental procedure, it's just not usually used for cases like mine. It's called a splenic artery embolization.
An interventional radiologist will go through the artery in my wrist with a catheter (I presume), snake his way to my spleen, and purposefully block the artery's path into part of my spleen. He's using some kind of a compound that's usually used for brain vascular procedures, which will expand and fill this branch of my splenic artery. Over the next several days, then, about half of my spleen will die from lack of blood supply. This will reduce the overall inflammation and make the spleen release the platelets it's retaining. This has proven so far to be a fairly durable procedure, with stable platelet counts lasting at least a couple years. However, at Johns Hopkins, they've only done this procedure in cases like mine for 12 other people, and none of them have been diabetic. There's a risk of infection after the procedure, either from the procedure itself or from the dying spleen tissue. For me, this risk is increased because being diabetic (especially insulin-dependent) increases your general risk of infection. And then once I start back on chemotherapy, my risk will increase again because chemo depletes your white blood cells (which fight infection). But there's no way to know how great my risk will be. And it appears there's no way for me to continue on any chemotherapy treatment if we can't get my platelets high enough for a sustained period of time.
So, in order to go back on the debilitating treatment that's slowly saving my life, I have to admit myself to the hospital so I can have half of my spleen killed. And then I'll stay overnight in the hospital on a Dilaudid PCA (patient-controlled analgesia) pump, and go home with some kind of narcotic pills to get me through the pain of waiting for half of my spleen to die. This is supposed to take two to seven days. I've given myself seven days off work, and virtually nothing to do but sleep and read during that time (if I'm not too drugged to read). I have friends and family scheduled to visit throughout the week, which will be lovely. I have some soft and gentle food to eat, like chicken stock, apple juice, boxed organic soups, and crackers. I have three much-anticipated books I just checked out from the library, and a couple episodes of The Great British Baking Show saved up.
To be honest, I'm pretty excited about the Dilaudid pump. The last time I had a PCA was when I was nine years old, in Children's Hospital in DC for the acute pancreatitis that eventually turned into recurrent, then chronic pancreatitis, which later led to my diabetes and now my pancreatic cancer. The pump then was morphine, until I had so much of it I could no longer tolerate the severe itching it caused (now I'm morphine-intolerant). Dilaudid, as many with illnesses or injuries know, is the most wonderful of all prescribed drugs, not only because it does give you a lovely high, but more importantly, because it works incredibly well to knock out pain. The low-dose Oxycodone I've been taking for pancreas pain off and on for months now is not nearly as effective. So even though I'm anticipating brand-new severe abdominal pain from my poor dying spleen, I'm relieved to know that I'll be getting enough of the good stuff to wipe the pain away.
So I'm prepared, and I don't think it will be terrible overall. But really, this whole situation is ridiculous. I'm intentionally killing half of one of my organs, just so I can keep sucking in more poison. This is the life of the cancer patient.
A coworker just sent a link to me, to today's Fresh Air interview with soul singer Sharon Jones. I'll admit that I hadn't heard of Sharon Jones, or her band The Dap-Kings, before today. But I'm glad I know about her now. Jones was diagnosed with stage II pancreatic cancer in 2013. She had major surgery followed by chemotherapy, but the cancer came back again. She's now back in chemo treatment, but continuing to work hard as a musician, recording and performing, even with her trademark energy and stage presence. There's a new documentary about her, Miss Sharon Jones!, directed by Barbara Kopple.
Although our pancreatic cancer diagnoses are different (and every person's cancer is different), many of Jones's experiences resonate with me. Terry Gross mentions a scene in the film when Jones forgot a few lines while performing. She told the audience she had chemo brain, and Gross says they were all totally with her, accepting and patient. I know that my friends, family, and coworkers feel the same way if I mention that I have chemo brain, but that doesn't ease my self-consciousness about it.
Despite what some doctors still say, chemo brain is real. It's memory loss, it's confusion and difficulty focusing. It makes me feel, in a very real and very personal way, that I am losing bits of my brain every day. I have always been very intellectual and analytical, and I'm not too humble to say that I'm smart. But in the last several months, I can feel that slipping away from me. Shortly after I started chemo in February, I realized that time had started passing differently for me. Sitting in my favorite armchair, reading, watching TV, or just being, I would look up from my dazed reverie and realize it was hours later than I thought. At other times, I would feel each minute repeating over and over, dragging on, but not as though I was bored or antsy. I just had no consistent sense of time anymore. Time was slipping and retreating, then coming back to catch me unawares.
Now, feeling older than I should at 30, I find myself standing in the middle of another room in the house, with no idea what I'm doing there. I think of something I need to do while I'm doing something else, then immediately forget the remembered task once I finish the task at hand. Sometimes I have to think of the same simple thing many times before I remember to actually do it. Just yesterday, I went to work with my husband's keys in my handbag without realizing it. The night before, when we came home together from a doctor appointment, he left his keys in the front door while he greeted our dog. I remember pulling the keys out of the lock, but I have literally no memory of what happened after that or how they got inside my bag. Whatever happened, apparently I immediately forgot.
And I used to be very skilled at multitasking and time management. I used to be able to engage in highly abstract discussions of philosophy and critical theory. Now I have to stretch my brain to stay focused on one simple work task for any extended period of time. And after thinking hard, I often feel tired and headache-y, like I've been squinting at a tiny screen for days on end. I hate having chemo brain.
Jones also mentions in the interview that when she's on stage, the pain is gone, because the energy she gets from performing either masks or relieves it. But she often has to pay for it soon after, maybe even right when she steps off the stage. I certainly know this phenomemon, since I often become unaware of my pain when I'm busy at work or focused on some kind of physical activity. Sometimes I can distract myself from my pain with focused mental activity, but the physical kind seems more effective. Of course, I can't always do physical activity, depending on my pain and other symptoms, but when I can, I often notice somewhere in the middle of things that I can't feel any pain. For example, earlier this week I presented story time at my branch. I had to move furniture to make room for the program on the floor, and then set up my carpet squares, flannelboard, and display books. During my set-up, I had pain off and on, but during the story time itself, as I sat on the floor and projected my voice and jumped and danced around with shakers, I couldn't feel a thing. Within a few minutes after finishing the program, though, as I was packing up and rearranging the furniture, it all came roaring back. And for the rest of the day, I certainly felt the effects of that intense physical activity, as distracting and enjoyable as it was.
At another point in the interview, Jones describes how cancer has changed her. She notes that her hair is gone and her energy is not the same, so when she performs now, she feels like she's a different person. I completely understand what she means. Cancer can't help but change who you are, in superficial details and, I think, in some fundamental way. But they're not all bad changes. Maybe cancer makes you more mindful, more appreciative, better at prioritizing and saying no. Maybe cancer makes you stronger, as our society loves to believe. Maybe cancer makes you a softer, calmer person. But really, no matter what you do, as Sharon Jones says, "the cancer is here."