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I am no longer a cancer patient. Well, okay, if you want to get technical about it, I'm still under the care and supervision of a team of oncologists. I'm still going to be getting CT scans and blood tests every three months. And in the center of the incision from my most recent surgery, there is still an open wound which I have to pack and dress daily. But I'm no longer being actively treated for cancer. More importantly, I no longer feel like a cancer patient. I did my last two rounds of intraperitoneal chemotherapy last weekend. I thought that that would be a landmark accomplishment, but actually getting past that hurdle felt less cathartic than I'd hoped. I felt thankful that it was over, but not triumphant. Mostly, I just felt exhausted and uncomfortable. The transformative moment came when I had the chemo port removed this past Thursday. Since it was installed in my body, the port has been irritating, uncomfortable, and annoying. I wasn't aware, until very recently, of how invasive the device actually was, or how much it was it was contributing to my overall discomfort and pain. And it wasn't until it finally came out of my body that I realized the extent of the impact it had been having on me not only physically, but emotionally as well. This cancer recurrence, and course of treatment, has been full of curve balls and last-minute revelations. Similar to my learning that I was having open (not laparoscopic) surgery, or that the course of chemo was three cycles of multiple treatments (not three treatments), my introduction to my chemo port was rather abrupt, and somewhat after-the-fact. Prior to surgery, I had agreed that if Dr. Nash found more tumors than the one we already expected, I would do another intraperitoneal chemo treatment. I also knew that, because of the terms of the clinical trial I'm participating in, a second treatment, unlike the first one, would have to take place after surgery, and that it would involve having a chemo port. I knew, conceptually, what a port was - an access point into my abdomen which would allow liquid to be injected into my peritoneal cavity - but I didn't know what it looked like, or exactly how it worked. So when I signed a consent, giving Dr. Nash conditional permission to insert a port during surgery, I truly had no idea what I was agreeing to. The first time awareness started to dawn when was Dr. Feferman, the Fellow who had assisted during the surgery, came to see me a few hours after I woke up, and asked to see the incision. I pulled up the gown, and looked, for the first time, at what had been done to my stomach. Unlike after the first laparotomy, when I had a neat line of 32 staples zippering down my abdomen (making a cute little detour around my belly button), this incision was was drawn closed with sutures. It was lumpy and irregular, and covered with a thick shellac of surgical glue. Between the post-surgical swelling, the rigidity of the existing scar tissue, and the stiffness of the glue, the skin on my belly was puckered and wrinkled in all sorts of crazy patterns. My navel looked like a deformed pinwheel. "I zhink it looks pretty good," said Dr. Feferman, in her heavy Israeli accent. "What do you zhink?" I sat for a minute, examining my Frankentummy. "Well," I said, "I think my bikini modeling career is definitely over." In addition to the incision running north-south along the length of my midline, there was was also smaller, horizontal, one on the left side of my abdomen - about 2" long, also stitched and glued shut. Underneath the skin was a suspicious-looking lump, about the size of a golf ball. I touched it gingerly. I don't know what I was expecting a chemo port to look or feel like, but it wasn't the apparently metallic egg I felt under my skin. I was confused, and a little alarmed, by the fact that the entire thing was subcutaneous. First, I didn't understand how it could provide access to my peritoneal cavity if it was sealed inside my abdomen. Equally perplexing, and more concerningly, how would it come out once treatment was over? Dr. Feferman explained that the port was a small metal reservoir, sitting under the skin, on top of my abdominal muscles. There was a catheter attached, going through my abdominal wall, and into the peritoneal cavity. Chemo would be introduced into my body via an i.v. needle stuck through the skin, into the reservoir; it would then flow through the catheter and into my abdomen. Simple enough. Removal, as I suspected, would involve another incision. She assured me it was a simple, quick, in-office procedure, done under local anesthesia. No big deal. Then came the curve ball. I asked when the port would be removed, assuming it would be either at the time of the final chemo treatment, or right afterward. No, Dr. Feferman answered, it wouldn't be for another three months. If real life came with a soundtrack, the room would've been filled with the sound of a loud record-needle scratch, and then abrupt silence, as my brain came to screeching halt. I'm sorry, what? The explanation that I got was that the risk of complications - specifically, hematoma and infection - was much higher when the port was removed earlier than three months. I asked Dr. Nash later if there was room for negotiation. He was hesitant. Complications were rare, he said, maybe one out of the thirty or so patients who receive EPIC per year will have them, but when they do happen, they're inevitably when the port is taken out early. We could discuss it, he said, but he really wasn't keen on the idea. What followed, as I mentioned in my previous post, was a challenging month and a half. Recovery was slow and hindered by complications. I was battling constant nausea and pain. I just wasn't bouncing back the same way I did from the first laparotomy, and I couldn't figure out why. I knew the port was a factor - the presence of the reservoir on top of my abdominal muscles was extremely uncomfortable - but I thought that that discomfort was primarily superficial. It turns out that, biologically speaking, the reservoir was just the tip of the iceberg. Two weeks ago, I had a CT scan to determine whether or not there was an infected pocket of fluid underneath the incision site. There was a small one, and some remaining partial sutures which were irritating both internal and external healing tissues, but none of that was really enough to explain my ongoing symptoms. Draining the fluid and removing the offending suture material - as hard and sharp as pieces of fishing line - brought some relief at the incision sites, but it didn't resolve the underlying problem. Dr. Nash wondered out loud if maybe the placement of the catheter from the port was causing the problem. He explained that it was routed around my intestines and behind my bladder, ending in the small cavity where my uterus had been. He thought that maybe the fact that the catheter was conducting the chemo directly into that sensitive area meant that it was getting the most exposure to the chemicals. He wondered if that was causing the irritation. This explanation was a revelation to me. I had envisioned the catheter as a short little spout coming off of the reservoir, going just through my abdominal wall, and allowing the chemo to drip into the larger peritoneal cavity - kind of like a tap for maple sap, but in reverse. As soon as Dr. Nash described the internal configuration of the rest of the port equipment, the pain I was having made sense. Never mind about the retained sutures and infected incisions; I had a large foreign object inside my body. Not just under the skin, but in between my organs. If you have surgery, and the doctor leaves, say, a small sponge in the wound, that can be extremely painful. Now imagine what it feels like if the surgeon leaves over a foot of quarter-inch rubber tubing circling your intestines, pushing up against your bladder, and sticking into your pelvis. Oh, and then repeatedly drips poison through it. No wonder I felt so lousy. I stepped up my lobbying to have the port removed sooner than the scheduled date of June 3rd. At that point, I still had one cycle of chemo treatments to go. After much negotiation, Dr. Nash and I compromised on a removal date of April 15th, just over two weeks after the last treatment. I thought that once the active torture was over, I could handle the passive discomfort for another couple of weeks. I was wrong. Two days after the last treatment, I reached the end of my rope. (No one who knows me will be remotely surprised to hear this.) I sent an email to Dr. Nash. "I know that I'm probably - definitely - driving you bananas at this point, but I'm really desperate. Can I please get this port removed now? I understand that there are risks involved with early removal (hematoma and/or infection), but neither of those risks is major or life-threatening. Meanwhile, I feel like keeping it in is interfering with my ability to function normally, and to heal and recover. I can't eat. I can't exercise. I can't lie comfortably on my stomach, or my left side - or allow my (16 lb.) cat to lie on top of me when I'm on the couch. (He's starting to get resentful about it.) "This has been, as you know, a rough several weeks. Emotionally, I'm worn pretty thin. I'm tired of being uncomfortable and nauseous and I just want this effing thing out of my body. I want to start getting back to normal. I know it's only two more weeks until it's scheduled to come out, but right now, that feels like an eternity. As you know well, my tolerance for risk is high; my tolerance for impairment is low. I'd rather take my chances with taking it out early than feeling like this for another 17 days." When I called the office the next morning, Aris, the office manager, told me that I was scheduled for an appointment at 9am on Thursday, to have the port taken out. God bless my doctor. As promised, the procedure was simple and quick. I asked to have my head propped up, so I could see the proceedings. I watched as Dr. Nash re-opened the incision on the side of my abdomen. He reached in with a hemostat, and popped the edge of the reservoir out of the opening. He told me to take a deep breath as he grabbed hold of it. I exhaled loudly as he drew his arm back, pulling out the tubing. "AAAAAAAAAAAAAAAAHHHHHHHHHHHHHH!!!!!!!" "Are you okay?" he asked, a little alarmed. "Oh. My. God." I said. "That feels SOOOOOOOOO much better!" The relief was instantaneous and enormous, as much psychic as it was physical. For a month and a half, my internal alarm system had been going off, telling me that there was something amiss inside my body. It was like having a splinter in your foot, or a piece of popcorn hull stuck under your gum: something was there that shouldn't have been there, and it hurt. It wasn't only that it was painful; it felt wrong. Getting rid of it felt amazing. After six weeks, my body suddenly felt like my own again. Chemo port on the inside; chemo port on the outside. (Of COURSE I kept it). (Reminds me a little bit of The Little Prince's pictures of boa constrictors...) I was walking on air for the entire train ride home. I was so happy to not be in pain. I was so happy to not be nauseous. And for the first time in six weeks, I was ravenously hungry. I couldn't wait to get home and eat the falafel sitting in my bag - my favorite NYC treat, grabbed from a cart en route to Grand Central. I was thinking about exercising, wondering how quickly I could get back in shape, and get in the air. Maybe I could gain 10 lbs. back in time to be able to do the Heroes skydiving event in June... I got off the train in Poughkeepsie, and started walking toward my car. My hand went to my abdomen, anticipating the feeling of flat, normal muscle for the first time since surgery. My fingers touched my side. I stopped in my tracks. There was hard, tender, lump when the chemo port had been. If my story were a novel, and I, as a reader, got to this point and read that the protagonist had developed a hematoma where her chemo port had been, I would be annoyed. Not so much because it's upsetting, but because, frankly, it's just not believable. I mean, come on: what are the odds? One hundred percent, apparently. I called Dr. Nash's office when I got home. He called me back a few hours later. "You get to say 'I told you so'", I said. "Oh, no," he said. "I would never say that. I got your message and thought, 'Oh, shoot.' I really didn't want that to happen." "You're a much nicer person than I am," I said. "I TOTALLY would have said 'I told you so'." I reassured him that despite the hematoma, I was still feeling a million times better than I had been; having the port removed was definitely the right call. He said that made him feel much better. He reassured me that the hematoma was on top of the abdominal fascia, which is incredibly tough. If it ruptured, it would be outward, not inward; there was no concern about internal bleeding. That made me feel much better. He also explained how to keep the hematoma from getting bigger (direct pressure) and how it would be handled if it did rupture (reopen the incision, find the bleed, and cauterize it). Unless it does rupture, though - and that is unlikely at this point, knock on wood - no intervention is necessary. It will take several weeks, and it will likely be sore until then, but the blood will eventually be re-absorbed. An inconvenience and an annoyance, but way better than having an alien invader intertwined in your intestines. And so, rather anticlimactically, ends Jewnicorn vs. Cancer, Round 2. I have no more procedures to undergo; no more treatments to do. There is nothing for me to do now but heal. And eat. As a happy post-script, I got my second COVID vaccine injection yesterday. This was the last thing on my medical to-do list before I could go back to "normal" life. I have to admit, I got a little emotional, waiting for the nurse to come back in with the syringe. It has been a very long month and a half, at the end of a very long year. Two more weeks, and I can officially return to the Land of the Living. I can't wait. Gonzo is very happy the port is out, too.
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I have a confession to make: Some days, I don't feel like a magical fucking unicorn with amazing healing superpowers. I mean, I think I always believe, deep down, that I AM one, but there are times, when I'm feeling really lousy, and physically and emotionally exhausted, when it's hard to get in touch with those feelings. The past couple of weeks have been like that. I've struggled to feel the Jewnicorn juju. Over the past few days, having managed to finally get more than just a handful of desperately-needed calories into my belly - and having a GI tract which is starting to function and absorb nutrients again - I'm finally starting to feel the sparkle coming back to my eye, and the spring return to my step. But man, it's been a rough patch of road. To begin with, recovery after this laparotomy didn't go as smoothly or as quickly as last time. Three years ago, I was hiking on Mohonk Mountain - with three dogs, no less - three weeks to the day after surgery. This time, it was eight days before I finally went for a gentle, two-mile walk, and just that wiped me out. There are plenty of completely legitimate reasons for things healing more slowly this time. I was already malnourished before even going into surgery, from five days of nothing but clear liquids. Scar tissue from the first laparotomy made closing the incision much harder this time; the skin and muscle were pulled painfully taut across my abdomen. The chemo port, the size of an egg, was still embedded under the skin in my abdomen, and very uncomfortable. And perhaps most significantly, the violent vomiting after my second IP chemo treatment tore out sutures in the center of the incision, and left me with bruising on the surface of my belly, and a large hematoma under the skin just below my navel. All perfectly good reasons to feel like crap, but when you're a self-competitive over-achiever who is used to bouncing back like a super ball after every surgical procedure, legitimate reasons don't really matter. Two weeks after surgery, I was already feeling extremely impatient with my less-than-meteoric progress. And then the hematoma ruptured. Because I know that some people who read this blog are squeamish and easily grossed out by such things, I won't offer a graphic description of exactly what transpired, or how it looked. (You're welcome, Todd Fisk.) I'll say only that it was messy and unpleasant, and then, when the open wound started to get infected a day or two later, it also became quite painful. That sent me back to the couch for several days; it also did nothing to help my state of mind. Healing after the last surgery wasn't exactly linear - there were good days and not-so-good days - but the trajectory was pretty consistently upward. This time, recovery was feeling like a game of Chutes and Ladders. Climbing back up after that setback took some work. Toward the end of the third week post-surgery, I was finally starting to feel like things were on getting back on track. Antibiotics cleared up the infection, which reduced the pain. Happily, the absence of the hematoma relieved some of the pressure on my abdomen; the fact that the post-surgery and post-IP-chemo swelling finally went down helped a lot, too. I was eating simple solid foods (yay for mashed potatoes and eggs, and Tara's zucchini bread), and had finally stopped losing weight. By the time Reet and I headed down to the city for what I expected to be my last IP chemo treatment on Friday, March 12th, I was feeling okay. Admittedly, I was not looking forward to the chemo; in fact, I was dreading it. But I also had some tools I was ready to use to help me get through it. In addition to having a newly-released audible version of "The Phantom Tollbooth" (from whence my beloved Milo got his name) downloaded on my phone, I was also planning to ask Dr. Reidy to order supplemental oxygen for me during the procedure. This wasn't for respiratory support; it was sleight of hand for my brain, to trick me into relaxing. As anyone who knows me knows, there are two activities I love more than anything else in the world: hiking in the woods with my dog(s), and jumping out of airplanes. When it comes to the latter, I particularly enjoy jumping with large groups of friends, in events involving multiple airplanes, going up to high altitudes. When flying above 15K', jumpers are required to be connected to a supplemental oxygen system until exiting the plane. We each have a nasal cannula, which connects to a line of tubing attached to a tank of 02 stored somewhere on the plane (usually next to the pilot). Canned oxygen flowing through a rubber tube into your nose has a very distinct and recognizable smell. During my first IP chemo treatment, as you may recall, the chemo nurse attempted to drip TWO LITERS of liquid into my peritoneal cavity. As the liquid started filling up my abdomen, it began pressing on my diaphragm, making it hard for me to breathe. I could only take little, shallow, panting breaths, and my blood pressure was starting to rise. Feeling a little panicky, I rang the bell for assistance. Daniela, my wonderful daytime nurse, came in and, after a little discussion, offered to put me on supportive oxygen. She took out a cannula and tucked the tubing behind my ears. I set the prongs under my nose as she turned on the air... and immediately, I was transported. I could feel the sun on my face, and the vibration of the plane, and the presence of my friends nestled around me. I felt my body relax. I broke into a huge grin, and my heart soared. Tears came to my eyes. "Oh my god," I said. "I'm in my happy place!" The remainder of the treatment was no less unpleasant, but for the rest of the time I had the oxygen in my nose, and a smile on my face. Photo credit goes to my friend, the incredibly talented Craig O'Brien. You know those breathtaking skydiving scenes from the most recent Mission Impossible movie? Craig filmed them. I related this story to Dr. Reidy when we met on the 12th, just prior to the chemo treatment. She laughed and said of course she'd prescribe oxygen. She also agreed to prescribing a prophylactic anti-emetic, to stop the puking before it started. Then she suggested some i.v. Ativan (similar to Valium) prior to the procedure, also to help me relax, which I thought was a great idea. Then we started talking about the chemo itself, and the next bombshell hit. One disadvantage, I've discovered, of being a patient who is very involved in her treatment, does her homework, and is generally well-informed, is that it's easy for the doctors who have been working with you for a long time, and know you well, to assume you have a more complete understanding of things than perhaps you actually do. By the same token, it's also easy for you, as a longtime patient, to make assumptions based on your previous experiences, and to maybe not ask as many clarifying questions as you should, because at this point, you're kind of a know-it-all. And so it is that you can come, abruptly and disturbingly, to the sudden realization, as you are talking to your oncologist, that the IP chemo to which you're about to be subjected is not, in fact, the last of your three scheduled treatments, but is, instead, the first of SIX more treatments. It turns out that EPIC is not three treatment sessions, but three treatment CYCLES, with each cycle consisting of three sessions apiece, one per day. I completed the first two sessions of the first cycle while in the hospital. The treatment I was about to have wasn't, as I thought, the delayed third session; we'd skipped that one entirely. Instead, this was the first treatment of the second cycle. I was also scheduled to have two more treatments over the next two days. The final three-session cycle would be in another two weeks. Well, fuck. Dr. Reidy, seeing my stricken expression, looked at me sympathetically. "It's totally up to you," she said gently. "Are you up to this?" I took a deep breath, then let it out slowly. "No," I admitted, "I'm not. But if I don't do it, and the cancer comes back in six months, I'm going to regret it. I mean, I know that it's probably going to come back regardless, but this feels like the best weapon we have in the arsenal, and it would be foolish not to use it." That said, I acknowledged that I wasn't anywhere near fully recovered from the surgery and previous sessions, and I was concerned that I (again) literally, didn't have it in me to do three more treatments. At barely 94 lbs., I was almost 10 lbs. under my normal - already skinny - weight. Three more days of treatment would likely mean three more days of little-to-no caloric intake, something my body could ill afford. I asked where the idea of three cycles of three treatments protocol came from, anyway. Since I'm participating in the first clinical trial ever about the type of cancer I have, I know the rationale isn't evidence-based. Was there some kind of logic behind it, or was it just because, as everybody knows from Schoolhouse Rock, three is a magic number? How about if, like last time, I just did two? As has become the refrain, Dr. Reidy admitted that no one is really sure about anything with this cancer, and treatment decisions are really just educated best-guesswork. She said that she didn't think that the incremental difference between two and three treatments was significant enough that it was worth the risk it would pose to my general health - not to mention my emotional well-being, which was clearly on some pretty shaky ground at that moment. We agreed to two treatments, with the possibility of a third if I somehow decided I felt up to it. The next two days were not fun. The third treatment didn't happen. I did not feel up to it. The treatments themselves weren't terrible, especially with the all the chemical and sensory supports. (Todd, and anyone else who is squeamish, you might want to skip the next two paragraphs.) The process is pretty simple. The chemo port is a reservoir, about the size of a small egg, which sits just under the skin, on top of the muscle on the left side of my abdomen. It has a rubber "septum" on the top, and a catheter which leads into my abdominal cavity. After some extremely uncomfortable prodding, while the nurse ensures that the port is still seated right, a needle is poked through the skin, and the septum, into the reservoir. Tubing from an IV bag full of chemo is connected to the needle, and then gravity does the rest. The unpleasant part comes afterward, when you then have to walk around with a not-yet-healed abdomen distended by a liter of fluid. And, unlike, say, when you drink a liter of soda, this stuff doesn't go anywhere. It just sits there, pressing on your stomach, compressing your intestines and making you feel like an overstuffed sausage. You're constantly nauseous and in pain. You can't eat. Your GI tract shuts down. When you go for walks, the sloshing sensation is extremely unpleasant. The second day is even worse: because barely any of the previous day's fluid has absorbed, the discomfort is doubled. Perhaps it goes without saying that I was not a barrel of monkeys over the weekend. Fortunately, Reet, determinedly cheerful and optimistic, wasn't fazed by my general humorlessness. And of course, the dogs helped make everything better. Thank god for dogs. I was still feeling pretty lousy when I got home on Monday, and started writing this blog post. It's now Thursday morning. To my surprise and delight, the past four days have brought gradual but steady improvement, both physically and emotionally. As the fullness and nausea slowly subsided, I was able to start making myself eat. As I started to eat, everything started to feel better. It's truly amazing what halting the process of literally (I still mean that) starving will do for both your body and your psyche. And it's a self-perpetuating cycle: as I've been feeling better, I've actually started to feel hungry for the first time since surgery. Having an appetite allows me to eat more, which in turn fuels my healing. I'm starting get my energy back. Yesterday evening, for the first time since surgery, Irie and I did the carriage road loop on Mohonk. I'll do the last three - or maybe just two; we'll see how it goes - IP chemo treatments at the end of next week, but for now, I'm not thinking about that. I'm just enjoying being able to appreciate food, and not being in pain. I'm reveling at being able to walk in the mountains with my dog again. I'm gathering my strength, and feeling my determination and resilience return. I'm getting back in touch with my inner Jewnicorn. Home with my animals after a crazy few weeks, resting and recuperating. No, seriously: you can't. If I asked you to guess how things unfolded in the three weeks since I got my CT scan results, I bet you a million dollars you wouldn't come up with this series of events. First, some background. My boyfriend Reet has two dogs: Davey, a sweet, soulful, 80-lb pit/Cane Corso mix; and Zahra, a 10-month old combination of some kind of hound and a Tasmanian Devil. They are wonderful creatures, and I adore them. Davey in particular has found a very special place in my heart, helping soothe the still-constant ache of losing Milo, the love of my life, two years ago. However, even the best dogs can sometimes have problematic behaviors. Davey, unfortunately, has a strong prey drive, and a predilection for smaller, furry animals. Since Reet and I have been together, we've been vigilant about keeping Davey and my cat, Gonzo, separate. (Yes, you know where this is going. Spoiler alert for anyone who can't tolerate the anxiety while you're reading: everyone is okay now.) I was scheduled for two minor procedures on February 10th, a biopsy and a colonoscopy/polyp removal, prior to my surgery on the 19th. (Dr. Nash agreed to do both on the same day, so that I only had to be knocked unconscious and have pieces taken out of me twice in two weeks, instead of three times.) I stayed up all night on the 9th, doing what is euphemistically called a "bowel prep", but is known by anyone who has had to do one as "hell on earth". (Any way you slice it, shitting your brains out for hours on end is just not fun.) I was so drained, figuratively and literally, when I finally went to bed at around 4am that although I set my alarm, I neglected to turn it on. When Reet and the dogs came to pick me up, so we could drive down to the city, I was running late. He and I were both distracted and, well, the terribly predictable happened. I'll spare you the horrific details. Suffice it to say that when all was said and done, Gonzo had two deep puncture wounds, and was missing almost all of his toenails; Davey had scratches and cuts all over his face, neck, and ears; Reet's hands were covered with scratches from Gonzo's nails; I had lacerations on the side and top of my wrist from sticking my arm into Davey's mouth, which required five and two stitches, respectively, and my hand blew up to twice its size. Needless to say, we did not make it to the city that day. I spent the next five days lying on a futon on the floor with Gonzo, as we both recovered. My procedures were rescheduled to Wednesday, the 17th, two days before the tumor removal surgery. This new plan necessitated some last-minute scrambling in order to prepare, both logistically and digestively. Regarding the former, rather than schlepping back and forth to the city multiple times, we planned to stay at Reet's condo in Brooklyn from Wednesday until Saturday. My Wombmate (a.k.a. my twin brother, Chanon) agreed to drop everything and come down and stay with my animals in my absence. For the latter, I was given the option of either doing two bowel preps, one on Tuesday and one on Thursday, or just doing the one on Tuesday, and then consuming nothing but clear liquids until Friday. As anyone who has ever done a bowel prep can attest, starving myself for four days was indisputably the more tolerable choice. The procedures on Wednesday were blessedly uneventful. When I showed up on Friday, however, stitched wrist still healing and already three pounds (pounds I could ill afford to lose) lighter, there was yet another curve ball. Given that three out of my four prior abdominal surgeries - including my hysterectomy, and the removal of both the primary and secondary tumors - were minimally invasive and robotic, and that I had had an extensive discussion with my surgeon prior to my one open surgery, I had assumed that this tumor removal would also be laparoscopic, and outpatient. I expected to be going back to Reet's condo later that afternoon, with just a few small incisions in my belly, and maybe a little discomfort from the gas they use to blow up your abdomen when doing laparoscopic surgery. Silly me. Dr. Nash came to see me while I was in pre-surgery. As we talked about the impending procedure, unexpected words started appearing in the conversation. Words like "overnight" and "epidural" and "abdominal chemo port". I sat there in my johnnie, scratchy slipper socks, and universally unattractive disposable surgical hairnet, and it suddenly dawned on me, "Ohhhhhhh... I'm having SURGERY." Well, okay then... After some more last-minute scrambling to deal with further logistics, and some quick emotional recalibrating, I was ready to go. (Sometimes you just gotta roll with the punches.) The procedure went well. Dr. Nash removed the primary tumor, which had not invaded any nearby organs, and a few other small tumors which he discovered on my intestines. He also removed several nearby enlarged lymph nodes. I woke up with an incision from the middle of my ribcage to my pubic bone, slightly shorter than the incision from the previous laparotomy, which ran, in my mother's highly quotable words, from gaggle to zorch. This one starts sort of mid-gaggle. I also had, embedded under the skin on the left side of my abdomen, a port for delivering yet another course of intraperitoneal chemo. Prior to surgery, I had agreed that if, during the course of the procedure, Dr. Nash found that the cancer had spread beyond the one tumor we were already aware of, I would be willing to do another round of IP chemo. Readers who have been present for this whole saga may recall that in the course of the first laparotomy, I had a HIPEC (hyperthermic intraperitoneal chemo) treatment. It involved having superheated, highly concentrated poison pumped into my abdominal cavity while I was still unconscious, and then being rocked gently back and forth for 120 minutes. I called it the spa treatment. The treatment I got this time is called EPIC: extra-procedural intraperitoneal chemotherapy. While admittedly having a much better acronym, EPIC is far inferior to HIPEC in terms of a spa experience. First of all, you have to be awake for it, which significantly reduces the relaxation factor. Second, it's done in three treatments instead of one, so you have to go through the unpleasant immediate recovery process multiple times. And finally, there is no gentle rocking. Because you're awake, you have to do the two hours of internal sloshing yourself, rolling over to your opposite side every 15 minutes, to make sure the juice gets into all of your various intestinal nooks and crannies. (When you get right down to it, honestly, there's nothing spa-like about it. It's a total ripoff. I'm thinking of complaining to management.) I got the first treatment the day after surgery. The nurse made sure I was lying as flat as possible on the bed (you want to ensure that the poison is evenly distributed), and then held up the two liter bag of fluid which was supposed to drip into my abdomen. Let me repeat that: she held up a TWO LITER bag of fluid, which was supposed to drip into my abdomen. I looked at her, wondering whether she understood basic physics. It turns out that EPIC treatments are not titrated to the person's size. The protocol calls for the first treatment to be two liters, regardless of whether you're 6'2" and 200 lbs. or, 5'2" with a ridiculously short torso, and barely over 100 lbs. soaking wet - like me. However, there are certain things that are just not physically possible, regardless of what the directions say to do. I had received a little over a liter when, feeling like a water balloon ready to burst, I called "uncle" and said I was done. I managed to get two of the three prescribed treatments in over the next five days. They were not fun. I spent a lot of time shivering, sweating, doubled over in pain, and vomiting (which is even more unpleasant when you've just had major abdominal surgery). I slept very little, couldn't eat at all, and my blood pressure went through the roof. I spent a lot of time, at all hours, walking laps around the hospital floor, trying to get my body to absorb and process the chemo, and trying to encourage my digestive tract to come back online. Reet came to see me every day, for the entirety of the allowed visiting hours. One morning he arrived to find me exhausted from a particularly rough night; I'd been doing laps from 4am until just before he showed up at 9. He sat down in the chair next to my bed and took my hand. Comforted by his presence, I fell asleep almost immediately. He stayed by my side, holding my hand, for the next three hours, as I got the most solid, restful sleep I'd had since before surgery. After he texted a picture of the scene to my parents, my mother announced that he is now family, whether he likes it or not. On the sixth day, I weighed myself and discovered that I was under 95 lbs. I was still nauseous and in pain from the second treatment, and shaky and weak from having eaten virtually nothing for 10 days. My team and I agreed that being able to eat was a priority; that wasn't going to happen for several more days at a minimum if we pushed the third treatment right then. I was discharged so that I could go home to be with my animals, rest, recuperate, and hopefully gain back some weight. That's what I'm working on right now. I'm moving around pretty normally, but the eating thing is still a significant challenge. Given my experience last time, however, this is pretty much par for the course. I expect gradual improvement over the next couple of weeks, as my stunned GI tract figures out how to do this digesting thing again.
The current plan is that I'll go back and do the last treatment outpatient in a week or so (and hopefully get the chemo port removed from my side shortly thereafter). When we talked prior to surgery, Dr. Nash said that if he found that the cancer had spread, he would also prescribe a course of intravenous chemo after I completed the intraperitoneal treatment. I didn't bother saying anything at the time - it's not wise to get into a debate with a man who is about to be slicing things out of your body - but my immediate feeling was that I probably wouldn't do IV chemo, regardless of his findings. We've been through this before. Because of its rarity, there is very little information about this kind of cancer, or how to treat it. (In fact, I'm participating in the very first clinical trial, comparing the effectiveness of HIPEC and EPIC. I'm one of the very few people for whom the comparison will be direct, having gotten both kinds of treatment.) The treatment protocols, such as they are, are based on the treatment of other kinds of cancer which originate within the gastrointestinal system. The traditional approach with, say, colon cancer, is to follow "debulking" surgery with a round of systemic chemo. However, the cancer I'm currently battling, signet ring cell appendiceal adenocarcinoma, doesn't respond the same way to IV chemo. There is some evidence that chemo shrinks existing tumors, but it hasn't been shown to have any effect on the unfortunately consistent 95% recurrence rate. My feeling has been that if, between surgery and the IP chemo, we've gotten rid of all the visible cancer, what's the point of IV chemo? There are no more tumors to shrink. Why put myself through that kind of ordeal when there is literally no demonstrable benefit? Dr. Nash surprised me when he came to visit me in the hospital, a couple of days after surgery. He said he'd been thinking about me all weekend, and came to the conclusion that I was right: there didn't seem to be any obvious benefit to IV chemo. He said he'd spoken with Dr. Reidy, my general oncologist, and that they would both be okay with going back to close monitoring (i.e. CT scans and blood tests every three months) after I finish EPIC treatments. Feeling pleased with myself, I asked him if my argument had also made him think differently about prescribing IV chemo as a default after surgery for appendiceal cancer in general. He said that it hadn't, but only because my case is so unique. "Well, duh," I said, pointing at myself. "Magical fucking unicorn, right?" (I love Dr. Nash because he indulges me by laughing when I say things like this.) He admitted that that was true, but it was also why my experience isn't universally applicable. He reiterated how he's never had a case where, at the time of diagnosis, the cancer had metastasized, but only to one other site. He's never had a case where the cancer took three years to recur; usually it's a matter of months to a year. And he's never had a case where, once it has recurred, the spread has been contained to to a few discrete sites; usually once it comes back, it's everywhere. He said there is clearly something unique about either my immune system, or the particular iteration of the cancer cells in my body, or both. They're going to be looking extensively at both my DNA, and that of the cancer, to see what information they can find. I was absolutely thrilled to get this news. Given that so little is known about this type of cancer, anything they can glean from my case will be a substantial addition to the existing body of knowledge. It's possible that information gathered from experiments on cells from my body might lead to new discoveries regarding treatment. I might be able to help save lives. I can't think of anything more rewarding. I should've known better.
I spoke too soon. I tempted fate. I angered the gods. I counted my metaphorical unhatched chickens, and then they came home to roost. (Grammar nerds: see what I did there?) Actually, I *did* know better. Even as I was writing the Facebook post last month, celebrating being cancer-free on the third anniversary of my diagnosis, there were little alarm bells going off in the back of my head. Not because I was afraid that I was cursing myself, but because I knew that I had a CT scan and blood tests scheduled for the end of this month, and I had been getting increasingly less-subtle signals from my body that something was up. When I got my blood test results this Tuesday, I wasn't surprised to see that one of my tumor markers - antigens which your body produces in response to cells it perceives as cancerous - was positive. When the same marker had spiked last summer, it had been a total shock, and seemed unbelievable, because I was feeling fine. That had turned out to be a false alarm; this time, I was pretty sure it wasn't. My CT scan results still hadn't posted by the time I had my follow-up tele-visit with my oncologist, Dr. Reidy, on Wednesday. She's a very emotive person, and cares deeply about her patients. I knew as soon as I saw her face that the scan had confirmed my suspicion: there is a small mass in my abdomen. She referred to it a "mass". The CT report, which I saw later, labeled it as a "hyperdense nodule". When I saw Dr. Nash - the appendiceal cancer expert who did all of my surgeries - yesterday, for an exam and biopsy, he more bluntly referred to it as tumor. Regardless of that you call it, the upshot is that the cancer has returned. I'm not exactly shocked. Dr. Nash and Dr. Reidy warned me from the beginning that this cancer has a 90-95% recurrence rate. Even as I reveled in my cancer-free unicorn status with every landmark I passed, I've always been aware of the possibility it could come back. There was always a chance the monster was still hiding under the bed. Still, the longer I've gone without a recurrence, the more hopeful I've become. Because it's such an aggressive cancer, it usually comes back quickly. As time has gone on, it really has seemed more and more like I'd actually beaten this thing. Having to face the reality that the monster wasn't completely vanquished is, well, rather disappointing. That said, I still get to maintain my unicorn title. Dr. Nash said he's never had a patient go three years before having a recurrence. He had also said - back after he sliced me open and poked around in my innards before soaking them in poison - that he'd never seen a case where the cancer had metastasized to different site, but hadn't spread throughout the abdomen. He said that either the timing of the surgery was amazing, or that my immune system was doing an amazing job of keeping the cancer under control, or possibly both. I'm going to out on on a limb and give credit to my immune system both for the initial lack of spread, and for keeping it at bay for as long as it has. It has the power of sparkly unicorn juju. Anyway, now that the cancer is back, the question is what to do about it. My team had initially said that if (when) there was a recurrence, I was going to have to reconsider the IV chemo I'd turned down the first time. When breaking the news to me, Dr. Reidy had commented that since it looks like this may be contained to one location, there was the possibility of radiation. However, neither of those options sounded particularly appealing to me. Attentive readers may recall that I am not big on systemic interventions which often cause as much (or more) damage than the aid they provide; I would much rather have things cut out of me than be poisoned or burned. When I brought this up to Dr. Nash yesterday, prior to my exam, he said that the concern with surgery is that tumors of this type often embed in the colon wall. If that happens, removing the tumor surgically also means removing a section of the wall, which would necessitate my walking around with a temporary ileostomy bag for a couple of months. That wouldn't be the end of the world, but it's clearly better to avoid that scenario if possible. However, upon examination, he said that the tumor feels like it's only attached in one place, and not embedded in my intestines. Much to my relief, he agreed to surgery as our first line of attack. (I may be the only person in the world who is relieved at the prospect of surgery, but as the saying goes, the devil you know is better than the one you don't, and this particular devil and I are extremely well-acquainted. We go way back.) Surgery is scheduled for February 19th. It will be a minimally-invasive, robotic, outpatient procedure. If he's able to get the entire tumor, with clean margins, and doesn't see anything else that looks cancerous or suspicious, then that will be that. If it ends up being more widespread, or he's unable to get the whole tumor out, then I'll have to consider radiation or chemo as a follow-up, but I'll jump off that bridge when I come to it. Even though I already knew the answer, I asked Dr. Nash if he gets the entire tumor out, what the odds are that the cancer won't come back. He said that, as we've discussed, it has a "predilection" for returning - I'm tickled by his use of that word - so I should pretty much count on it. However, despite that likelihood, he did allow that I am, in fact, a magical fucking unicorn, so you never know. As always, I feel better with information and a plan than I do without it, so I left that appointment feeling much less anxious than I had going into it. Still, I was struggling with the idea of being a cancer patient AGAIN. I was bummed about going back to CT scans and blood tests every three months (I had just graduated to every 6 months last fall), having more surgeries and treatments every time it comes back, and probably having to deal with this for the rest of my life. However, sometime during the elevator ride to the lobby, my brain pulled some kind of ninja trick which suddenly allowed me to think about the situation differently. (I think my spiritually-inclined friends would call this a moment of Grace.) Rather than saying that I have an incurable cancer, I've decided to consider this a chronic condition, which needs ongoing monitoring and management. I have all kinds of things working in my favor: advanced diagnostic technology which is able to detect recurrences very early on; a vigilant team of skilled medical watchdogs, keeping a careful eye on me and ready to spring into action at the slightest sign of trouble; and an apparently robust immune system which is working to defend me even before I'm aware there's a battle going on. And, of course, there's the unicorn juju. I'm getting a little ahead of myself, though. I need to take one step at a time. I'm going to stay focus my attention on the procedure on the 19th, and on my hope of not having to do any further treatment beyond the surgery itself. I'll keep y'all posted. Hello Team Jewnicorn!
As I mentioned was my plan when I made my last post, I've been taking a break from blogging. Until now, there haven't been any medically-related developments to report. I've just been focusing on getting back to normal life, enjoying myself and savoring the sense of not feeling like a cancer patient. One of the biggest components of returning to normal was getting back in the air. On June 28th, six months after being diagnosed, I returned to the sky. The picture above (taken by my boyfriend, David) is one of the jumps from that day. I'm at about five o'clock in the lower circle, with black legs, red arms, and black helmet - with the end of my ponytail sticking out from underneath. (Fellow jumpers will recognize the helmetless guy in the middle as world-class organizer, Louis Tommaso.) I've got a bunch of great events I'm looking forward to, including another World Record attempt in Perris, CA, in November. It feels sooooo good to have my wings back! I also said in that previous post that I'd write again when I had some news regarding my cancer to share. I do, so I am. In the interest of not keeping y'all hanging, I'll skip to the chase first, and then provide explanation and context. The salient piece of information is that I had my first post-recovery set of blood tests and CT scans. The blood test results showed that the tumor markers, two of which had been quite high, were down to within normal limits. The CT scan showed that there was no appreciable difference between the images taken last week, and those taken in December (other than, you know, being down several organs). The medically validated conclusion is that currently, there is no detectable cancer activity in my body. Lest anyone be inclined to prematurely break out the champagne - and tempt the cancer gods - I hasten to clarify that this does not mean that the battle is over. It doesn't even mean that there aren't still cancer cells lying in wait, strategizing their next attack. It does mean, however, until my next round of tests in twelve weeks, I can breathe easier. It also allows me to feel really good about my decision not to have systemic chemo. So that's the big news. For those who are interested in more in-depth analysis and musings, read on: Since recovering from surgery, when people have asked me how I'm doing, I've had a problem knowing exactly how to answer. My issue is verb tenses. If I said I HAVE cancer, it sounded like I was still actively sick and in treatment. But if I said I HAD cancer, it sounded like the battle was over, and I'd won. Neither was true, but neither was really false. I felt like I was in this in-between place, where both words were simultaneously correct AND wrong. Like the cat who was both alive and dead until the scientist could look in the box, I both did and didn't still have cancer. I had, in effect, Schroedinger's cancer. I hoped that, like taking the lid off the box, getting this set of tests would give me a definitive answer one way or another. The weekend before going through the tests, I had a realization. Checking my blood and scanning my body would only tell me what's going on now; it wouldn't say anything about the future. If Schroedinger's cat were dead, it was going to stay that way. My metaphorical cat, on the other hand, was not so predictable. Sure, it was dead now, but who's to say it wouldn't turn into a zombie, get up, and come lumbering after me? I decided I needed a better metaphor. Throughout this adventure, I've described - and visualized - this cancer as a monster, one that is lurking in dark places, waiting for the opportunity to attack. Getting these tests is kinda like being five, and sitting on your bed, in the dark, wondering what's hiding underneath you. You screw up your courage and fling your upper body quickly over the edge of the bed, allowing yourself the briefest glimpse before you retract quickly to the safety of the center of the mattress. Nothing there. You snuggle back under the covers, relieved and happy, breathing a little easier now that your bedroom appears to be monster-free... and then you remember the closet. I definitely did feel a huge sense of relief, and even joy, when I saw that the level of my tumor markers had decreased. I was even more pleased a few days later, when I saw the words on the CT scan report, "No evidence for current or metastatic disease." Having all this positive evidence together made me almost giddy. I'd already claimed victory for Round One, but now there was evidence making it official. Ha! Take that, motherfucker! ... and then I remembered the closet. Unlike my indecisiveness about verb tenses, from the very beginning of this adventure, I've been definitive about my pronouns. It is not MY cancer; it is the cancer which is in my body. I'll sometimes refer to "my diagnosis", since I was, in fact, the person to whom the label was applied, but I will not use the possessive when referring to the disease. It is an unwelcome invader which I do not want, and refuse to claim. Grammatically, that refusal can get a little clunky, but I believe that the message I send with the language I choose is more important than style. I believe that we construct our own realities in the narratives we create. That's not to say that we can change facts with our brains - I can't make the cancer disappear by disowning it - but I do believe that mindset is hugely influential on outcome, especially where healing is concerned. I have no doubt that a big part of the reason that my surgery and recovery went so smoothly was that I decided ahead of time that they would. There is a part of me that honestly believes that I really am a magical fucking unicorn, and I'm beating this disease by sheer force of will. At the same time, I'm a pragmatist. Every study I have read, and every doctor I have spoken with says the same thing: this cancer has a 90% recurrence rate; the overall survival rate is equally dismal. It is my plan, and my expectation, that I will be among the very small percentage of people who survive it, but I can't lose sight of the fact that I'm up against some heavy odds. Paradoxically, keeping that fact in mind is, in some ways, the best weapon I have. Remembering how powerful my enemy is is what keeps me fighting. There's a saying in skydiving: complacency kills. I don't want to get complacent. I don't want to start believing that I'm safe, and let the enemy catch me unawares. When fighting monsters, one always has to have a sword at the ready. I need to be vigilant, and prepared to jump back into the fray at a moment's notice. I have to keep my horn sharpened, and my eyes on the closet. I talked to Dr. Reidy about this, when I met with her to follow up on my test results. (I meant to wear my unicorn horn, but forgot to bring it with me when I left the house that morning. I was bummed, because she TOTALLY would have appreciated it. I gotta remember it next time.) She is one of the best cheerleaders in the world, indefatigably positive, but she agreed with my assessment, and my reticence to let down my guard. She confirmed what I'd already gathered from my research: they don't use the word "remission" in reference to this cancer. Remission implies that the disease has been banished, or has retreated; at the very least, that it's in a quiescent state. However, because this cancer is so insidious and hard to detect, there is no way to know, from blood tests and CT scans, what's going on at a microscopic level. And because it is so virulent and likely to recur, they can't assume that nothing detectable means there's nothing there. So they use the phrase, "No Evidence of Disease", which - as I realized about my tests - describes the current situation, but doesn't make any promises about the future. So I am going to stay focused on right now. Right now, I feel good and healthy and strong. I'm not in remission, but I am experiencing respite. For the time being, I don't have to be actively engaged in combat. For the next twelve weeks, until my next set of tests, I will keep my eye on the closet, but I'm going to live my life. Now if you'll excuse me, I have some airplanes to jump out of... (That's right: I just ended my blog post with a dangling preposition. I'm livin' on the edge, baby!) I am a terrible blogger. Not in terms of my writing style - I think I can tell a pretty good story - but the format doesn't work so well with my method of actually generating content. I can be voluble and communicative at times, but, as anyone who has waited for a response to an email, or a Facebook message, or even a text, from me knows, the occurrence of those times is wildly inconsistent. For reasons I can't easily explain - but I'm sure would be great fodder for therapy - my internal critic prevents me from creating and sharing anything, under any circumstances, that isn't articulated EXACTLY as I want it to be, with proper spelling, grammar, and punctuation - with occasional intentional rule violations for style. (The cartoon below gives me immeasurable pleasure. It's funny, as they say, because it's true.) I will literally (as always, actually literally) spend fifteen minutes crafting a three line text. It's time-consuming and, frankly, exhausting. Unless I'm in the mood, and able, to sit down and focus on a several-hour, possibly even multiple-day, undertaking, I just don't even want to attempt to write. Additionally, there's the fact that unless I have specific news to report, I don't feel moved to share anything. I don't think anyone, except maybe my mother, is interested in daily updates on my bodily functions. And while I know that there are some people who would love for me to use this blog as a platform to more deeply examine my thoughts and feelings about Life's Big Questions, I have no desire to subject anyone to the constant monkey chatter that goes on in my brain. You've all got your own monkeys you're trying to ignore. All of this is preface to an acknowledgement that it's been weeks since I've posted anything, and a warning that it will likely be a while before I do so again. Happily, there's not a whole lot going on, cancer-wise, right now. I'm still in the process of recovering from the laparotomy and HIPEC, but other than my temperamental intestines, my body is healing at its usual preternatural pace, I'm fully functional, gaining strength, and getting closer every day to being back to normal. After MUCH discussion with my surgeon, my medical oncologist, and virtually anyone else who would listen, I finalized my decision not to do systemic chemo at this point. My rationale can be boiled down to five basic points: 1) It's a total crapshoot as to whether or not it will provide any benefit. Furthermore, it's impossible to definitively correlate any outcome, positive or negative, to the intervention. If I did it, no matter what happened, I'd never know whether or not it made any difference. 2) At best, 8 to 12 rounds of biweekly chemo would make me feel pretty lousy for a good portion every other week, for 3 to 6 months. At worst, it could do permanent damage to my body and/or brain, and possibly even kill me. 3) I don't have the physical reserves to handle the assault on my body. As I alluded to above, digesting food, and getting adequate nutrition, is still a work in progress. I'm barely over 100 pounds. I can't afford to be nauseated and unable to eat. 4) I don't have the emotional reserves to tolerate the assault on my psyche. I have approached every other procedure secure in the knowledge that I'd be uncomfortable for a time afterwards, but that I would muscle through, recover, and ultimately be fine. I was positive, confident, and optimistic, and I think that attitude was essential in my ability to heal quickly. I don't feel that way about chemo. Thinking about subjecting my body to intravenous poison, and feeling intermittently awful for weeks on end, makes me want to curl up in a little ball and cry. 5) Dr. Reidy, my medical oncologist, made a comment which really helped me clarify my thinking. She said, "I just want to make sure that if you don't do chemo, and the cancer comes back, you'll be okay with your decision." I genuinely considered that question, playing out different scenarios in my head, and gauging my emotional reactions. After thinking, and feeling, it through, I confirmed that yes, I really would be okay if that happens. I came to understand, early on in this process, what this cancer is. I made my peace with the fact that, regardless of what treatment I undergo, the likelihood of a recurrence is extremely high. I can live with that (metaphorically speaking). What I wouldn't be able to live with would be subjecting myself to all the negative side effects, and risks, of chemo, and then having the cancer come back anyway. That would make me feel like the whole ordeal had been pointless. It would also completely undermine my confidence in chemotherapy as an effective method of treatment. It would be utterly demoralizing. To my surprise and relief, both Dr. Reidy and Dr. Nash understood my logic, and are supportive of my decision. Although I was comfortable with it regardless, having my doctors' blessing is reassuring. My parents are on board, as well, which also takes a load off my mind. Now I just need to run it by my oncologist friend, Jenn Bocker, the one who knocked sense into me regarding the laparotomy. (Which I am doing, in the most chickenshit way, right now. Thoughts, Jenn?) So that's it. For now, no more interventions. We switch from taking out organs and trying to kill cells to focusing on nurturing, healing, and restoring my body. I'll remain under the watchful eye of my MSKCC team, getting CT scans and blood tests every three months for the first two years, and then every six months. I'll keep y'all (I've always wanted an opportunity to use that word) posted. At the moment, the future seems more hopeful than anyone on my team - except me - predicted. It's the end of Round One, and the score is Magical Fucking Unicorn: 1; Cancer: 0. I'm keeping my fingers crossed that eventually this entire surreal episode will just be an interesting story I can tell around the bonfire. "And then there was that time I had this really rare, aggressive, and usually deadly, stage IV cancer. I had a bunch of surgeries, including this crazy procedure where they sliced me open and filled me with chemo. It totally sucked for about five months, and then I was fine. Wanna see my badass scar?" I am thankful beyond words for the love and support which has been showered on me, and has sustained my spirit and buoyed my soul, for the past five months. To each and every one of you, from the bottom of my heart, thank you. For now, Jewnicorn out. For the past several weeks, I have been impaled on the horns of a dilemma. Caught between Scylla and Charybdis. Stuck between a rock and a hard place. Trying to determine the lesser of two evils. To chemo, or not to chemo, that has been the question.
So far, in the war against the evil which has invaded my body, I have gone all out. I've been through multiple surgeries. I've had four organs and two other named body parts removed. I've had people get up close and extremely personal with sections of my insides which were never meant to see the light of day, let alone be manhandled and inspected in so intimate a manner. I've been sliced open from hither to yon, and had my innards stewed in poison. For each threat this cancer has presented, my treatment team and I have fought back with every weapon available, and with no holds barred. And, so far, I seem to have maintained the upper hand. I've bounced back quickly from each procedure, even the most recent, most invasive, one. My gastrointestinal tract is still in the process of getting back on its proverbial feet, but the rest of me is operating almost completely normally. Three weeks post-surgery, my dog (and my honorary dog) and I were back to hiking in the Gunks. I'm still a little tired and a little sore, and I still have to be conscientious about not lifting heavy things, but considering what I've been through, and where I expected to be at this point in the recovery process, those are minor inconveniences. Biologically speaking, the picture is much rosier than we ever anticipated. My surgeon - one of the few doctors in the country with expertise in treating the rare type of cancer which took up residence, uninvited, in my abdomen - was extremely surprised not to find any further spread of the disease beyond the primary tumor and single metastasis. Despite an exhaustive search, he didn't find any more visible cancer anywhere. He said that he can't remember seeing another case with a cancer that is so histologically aggressive, yet so well-contained. He thinks we must have caught it just in time. I think he just doesn't understand what the term "magical fucking unicorn" means. Despite our success up to this point, both he and my medical oncologist insist that this is not the time to rest on our laurels. They feel strongly that my next step should be 4-6 months of intravenous chemotherapy. They believe that it's possible, even likely, that, despite all the interventions I've undergone, there may still be cancer cells lurking somewhere in my system. They are adamant that chemo is my best bet for eliminating those (hypothetical) cells, and staving off a potential recurrence for as long as possible. While I am fiercely determined to fight this cancer, I have had some serious reservations about this tactic. First of all, as with every other aspect of appendiceal cancer, both regarding the disease itself and treatment, there are no studies to support the assertion that i.v. chemotherapy is actually effective. It's a working hypothesis based on anecdotal evidence and collective experience. That's not to say that I doubt the wisdom of a preponderance of cancer doctors; they obviously know a shit-ton more than I do about this stuff. But when weighing the factors that I am taking into account while trying to make this decision, the fact that chemotherapy is not a proven, indisputably effective method of eliminating this type of cancer is not insignificant. (As a total aside, I think that "preponderance" should be the collective noun for a group of doctors.) I'll return to this point later. For now, for the sake of argument, let's accept the hypothesis as true: systemic chemotherapy seems to successfully eliminate appendiceal cancer cells. The problem is that killing active cancer does not prevent future recurrences. Even if the chemo does succeed in destroying any cells which somehow managed to evade the multiple organ and tissue excisions, and survive the poison soup bath, there's still a pretty good likelihood that my body is going to produce more of them in the future. It's kind of like running your enemy over with a car, stabbing him a dozen times with a sword, and then shooting him in the head. It will almost definitely ensure that he's dead, but it won't stop his brother from coming after you next month. So if - stretching that metaphor far beyond its logical limits - the gun is the most effective weapon available, but we have a finite amount of bullets, does it make sense to waste them on the guy who is probably already dead, or should we save them for the next wave of attackers? Explaining that in more literal, and sensical, terms: Because, as mentioned above - and ad nauseam throughout this blog - there are no established treatment protocols for appendiceal cancer, the common wisdom is to follow guidelines for treating colorectal cancer. The preferred "first line" chemo for that family of cancers is FOLFOX, a combination of three drugs - folinic acid, 5-fluorouracil, and oxaliplatin - which seem to work synergistically to slow or stop cancer growth. The biggest problem with FOLFOX is that you can only use it once. Repeated dosing with oxaliplatin causes peripheral neuropathy, a "progressive, enduring and often irreversible tingling numbness, intense pain and hypersensitivity to cold, beginning in the hands and feet and sometimes involving the arms and legs, often with deficits in proprioception". (Thank you, Wikipedia.) The threshold for when this side effect manifests is different for everyone, but once it appears, it will continue to happen, and worsen, with each round of chemo. For some people, it will eventually resolve once treatment is stopped; for many, it's permanent. In either case, once you've gone through the process and reached the threshold where the symptom appears, you can't use FOLFOX again. When I voiced this particular concern, Dr. Nash suggested that I could do a course of treatment using one of the other drugs in the FOLFOX cocktail, 5-fluorouracil - a.k.a. 5FU - alone. FOLFOX seems to be better at slowing the progression of the disease once it has already manifested than just 5FU, but there doesn't seem to be a difference in overall survival rates between the two drugs. Most relevant to this discussion, neuropathy is not a common side effect of 5FU when administered by itself. Dr. Nash said he would consider 5FU a good compromise between not doing chemo and pulling out all the stops with the FOLFOX. I don't think that doing chemotherapy with a different drug is exactly a compromise between doing chemotherapy and not doing chemotherapy, but I'll concede that it does solve the problem of providing treatment without deploying the nuclear option prematurely. Following this conversation, I was feeling more inclined toward the chemo route. However, I realized that I knew very little about the potential side effects of 5FU, so I set out to educate myself first. Once again, if you have been reading this blog with any sort of consistency, you have no doubt noticed that my way of coping with fear is to learn absolutely everything possible about whatever it is I'm facing. As soon as I learned that I might have cancer, I started doing research. Once the diagnosis was confirmed, I completely submerged myself in Google Scholar. I spent days on end scouring articles in medical journals, reading everything I could find about the type of cancer I had just learned I had. Although the information I gathered painted a pretty dire picture, reading those statistics didn't freak me out. In fact, having concrete facts, and an understanding of what I was up against, helped me feel prepared, and more in control. Understanding my enemy has helped me stay relatively calm and matter-of-fact throughout this entire process. I can count on one hand the number of times I've broken down in tears; they've all been either when thinking about how my illness is affecting my parents, or just out of sheer exhaustion. I've never cried because I've been afraid about what will happen. Learning about chemo, however, was an entirely different experience. My primary hesitation about doing systemic chemotherapy in the first place is that all cancer drugs are, by definition, FUCKING POISON. They are cytotoxins, specifically designed to kill cells. Yes, they target cancer cells, but they cut a wide swath of destruction through the healthy cells involved in many necessary biological functions, as well. The side effects from chemo range from uncomfortable and inconvenient to dangerous and potentially deadly. While I was aware of all this theoretically, I was completely unprepared for the emotional impact of learning about the reality of 5FU. I got as far as the information sheet provided by the manufacturer before I went completely off the rails. I started reading the list of the most common side effects - fatigue, loss of appetite, nausea, vomiting, diarrhea, mouth sores, nose bleeds, suppression of bone marrow production, burning hands and feet, headaches, angina, and, of course, hair loss - and just fucking lost it. For over a month, since my surgery, I have struggled with constant nausea and an aversion to even the thought of most foods. When I do manage to force food down, my system protests with stomach cramps, and gas pain so severe it feels like knives in my intestines. I've gone from slender, but still strong and athletic, to painfully skinny, with very little muscle tone; I am, literally, a 98-pound weakling, It's more than just the process of recovering from the procedure itself; I'm contending with the after-effects of a one-time - albeit concentrated and extended - exposure to poison. My gut is slowly healing, and I know that I will, eventually, get back to normal, but it has been a serious ordeal, draining both physically and emotionally. The idea of putting myself through this, or even worse, again, for 4-6 months, feels overwhelming and utterly demoralizing. Additionally, I've also been feeling the cumulative emotional impact of the amount of time I have spent sidelined by illness and injury over the past decade. After recovering - multiple times - from a potentially debilitating autoimmune disorder, eight shoulder surgeries, two abdominal surgeries (prior to the three I just had), and a broken back, I just cannot fathom the idea of intentionally benching myself again. I sat there, staring at the list of side effects, bawling. Tears streaming down my face, I heard myself say, out loud, over and over again, "I don't want to do this!" I was like a three-year old being told to eat her vegetables - but in this case, I was pretty sure that eating the broccoli might actually kill me. I let myself throw a tantrum for a couple of minutes before my logical brain decided to take the reins again. These were all possible side effects; not every person experiences all of them. To put this list in perspective, I needed more information. So I put on my big-girl panties, and went back to the internet to pore through medical journals for studies and statistics. But when I found the scholarly articles I was looking for, far from providing reassurance, they revealed something much more upsetting. I'd heard of "chemo fog", where patients undergoing i.v. chemotherapy feel hazy, and have trouble thinking clearly and remembering things. What I didn't realize is that this is not an occasional occurrence; these are effects that happen, to some degree or another, to virtually everyone. Furthermore, this isn't a transient phenomenon. 5FU can seriously fuck you up, long-term. It causes neurological and cellular changes in certain regions of the brain, specifically the hippocampus. It has lasting, probably permanent, negative effects on cognitive functioning and memory. It can cause cause long-term disruption to the systems which control emotion regulation, causing irritability, anxiety, and depression. It also produces ongoing damage the to central nervous system, causing demyelination of neurons even after treatment has stopped. All of this scared the living shit out of me, but also provided me with definite clarity. I'm weighing the possibility that a course of systemic chemotherapy might eliminate any remaining cancer cells which may still exist in my system, versus the probability of significant, ongoing, discomfort; the likelihood of weight loss which I cannot afford; and the essential certainty of brain damage. The first two items give me significant pause; the third is a deal breaker. I'm 48 years old. I'm already worried enough about the natural memory impairment and cognitive decline which comes with age. I know that I don't process information as quickly as I used to, and things I swear I could remember just last week suddenly escape me. More times than I care to admit, I've experienced the disconcerting phenomenon wherein I suddenly realize that, in the words of poet Billy Collins, "the memories (I) used to harbor (have) decided to retire to a southern hemisphere of the brain, to a little fishing village where there are no phones." It's only going to get worse from here on in. I am profoundly grateful for my ability to still think relatively clearly, and remember where I parked my car most of the time; I don't want to jeopardize that. I'm holding on to my remaining brain cells for all they're worth. All joking aside (although, truth be told, I'm not really joking) there is a more immediate reason to worry about memory impairment and deficits in cognitive functioning: I am a skydiver. Now that spring is on the way, and I am - hopefully - going to start regaining strength, I'm looking forward to once again being able to fling myself out of airplanes. Doing that without killing myself, or anybody else, requires the ability to remember, take in, and process an enormous amount of information very, very quickly. An error in judgment or a momentary delay in decision-making can have devastating, even deadly, consequences. If I'm not operating at 100%, I can't jump safely. If I can't jump safely, I shouldn't be jumping at all. And not jumping is just not an option. I have been very clear, from the time I was diagnosed, that my decisions about treatment were not going to be based solely on maximizing my life expectancy. Yes, I'd like to live as long as possible, but more important than the duration of my life is the quality. Skydiving is a huge part of who I am, and doing it brings me incomparable joy. Poisoning my body, damaging my brain, and grounding myself, maybe permanently, just so that I might possibly delay a potential recurrence of an illness which could still happen anyway does not compute. All of that said, I am not outright rejecting the idea of ever doing systemic chemotherapy. I have an appointment with Dr. Reidy, my medical oncologist, in a week and a half. Maybe she'll give me some information which is different than what I've read, which completely changes the equation and shifts my perspective. I'm open to that possibility. Also, I still have one more procedure to schedule with Dr. Nash: the removal of a probably-benign-but-we-really-have-to-make-sure polyp in my colon. If something completely unexpected happens and that turns out to be cancerous, I'll re-evaluate my priorities and my plan. Even if neither of those things happen, not doing chemo now doesn't mean I'm stopping treatment, or closing the door on the possibility of doing it in the future. I will continue to be under the care of my cancer care team for the next three years. I'll have blood tests, to see if my cancer antigen levels are rising, every three months. I'll have CT scans every six months. If the cancer returns, we'll go back to the drawing board and come up with a new plan, which may - or may not - include chemo. As with everything else in this journey so far, I'll deal with that decision when I come to it; for the moment, I've made my choice. 1. Welcome to the Sucky Part
When I called my parents, about two and a half months ago, to tell them I had cancer, their respective reactions fell on opposite sides of a spectrum. My mother, one of the most determinedly and irrepressibly optimistic people on the planet, went straight into denial: "Once we figure out what's going on with you..." "We know what's going on with me, Ma. I have cancer. I have the pathology report right here. It says 'metastatic ovarian signet-ring cell carcinoma'." "Well, once we know for sure..." We had some version of this exchange pretty much every day for the first several weeks. My father, on the other hand, is extremely logical and pragmatic; he's a physician (theoretically semi-retired). He immediately started doing research. Because of its rarity, information on the type of tumor I had is sparse, but what is available is not at all promising. My dad discovered, as had I, that the statistics are, in his words, pretty grim. So he started emotionally preparing himself for the possibility of my potentially imminent death. (He wrote an absolutely beautiful, heart-wrenching, poem for, and about, me. My first reading of it was one of the very few times in the course of this ordeal that I've totally lost my shit.) I, being very much the product of both of my parents, have had one foot planted firmly in each of these perspectives. I'm fully aware of the aggressive nature of the cancer in my body, and what the statistics indicate about my prognosis. The odds are not in my favor. While not dismissing that, I am nonetheless sanguine about the future. Even in the beginning, when we had no idea where the primary cancer was, or how extensively it had metastasized, I was fairly confident that the situation was not as bleak as it appeared. Without a shred of evidence to back up my assertion, I assured my parents that I wasn't going anywhere anytime soon. "I think I will probably be dealing with this for the rest of my life," I said. "That life will probably be shorter than I've expected, but it's not going to end in the next couple of years. I think the next few weeks, and probably months, are going to suck, but after that, I really think I'm going to be okay." So far, that seems to be the case. Once my doctors and I decided on a course of action, and the laparotomy and intraperitoneal chemo were scheduled, I started bracing myself for the sucky part. Everyone told me that the recovery from an open abdominal procedure is misery. My superpower is bouncing back quickly from surgery, but despite my preternatural ability to speed-heal, I figured I was probably going to be pretty impaired and uncomfortable for quite a while. Happily, regarding the much-feared gaggle-to-zorch incision, the anticipation was worse than the reality. Pain from that has been minimal, and I've been surprisingly mobile surprisingly quickly. I was moving close to normally, without pain - or pain meds - by the time I left the hospital, four days after surgery. By the tenth day post-surgery, I was able to take my dog (and my honorary second dog, who is staying with me) for a walk to the end my road and back - a total of a mile and a half. Granted, it was a slow walk, and I passed out from exhaustion after I got back, but I accomplished it nonetheless. Over the course of the past week, we've continued to walk, and that distance has lengthened to four miles. Not bad, considering I still had thirty-one staples zippering down my front. I finally got those out two days ago, which means that I can now sit normally, which means I can drive. Other than the restriction of not lifting anything heavier than ten pounds - which I'm mostly following - I'm back to my usual self-sufficiency. On Monday, twenty days after surgery, I head back to work. (I've been working from home, part-time, since a week afterward; this week, I'll go into the office.) It turns out that I was focusing my anxiety on the wrong thing. Recovering from having your entire abdomen opened up is really not that big a deal. Recovering from having your innards soaked in hot poison and a segment of your large intestine removed, on the other hand, is a bitch. THIS is the sucky part. I'm not, by nature, a complainer, nor am I inclined to wallow in self-pity. I think that unless you're trying to solve a problem, focusing on the negative aspects of a situation is unhelpful and a waste of time. Because I'm very aware of the impact that mindset can have on the body's ability to heal, I have consciously and deliberately kept my thinking, and my writing, positive. Right now, however, I need to step out of character for just a moment, and take a couple of minutes to indulge in some unabashed whining. Between the HIPEC, the cecectomy, and the trauma of the surgery in general, my entire gastrointestinal tract decided it had had enough, and checked out. It completely shut down post-surgery, for almost four days. It finally showed enough signs of life for the hospital to be willing discharge me, but it was clearly still mostly dead. Two weeks later, it's partially functional, but still incredibly recalcitrant. Digestion is slow, and extremely uncomfortable. Eating anything makes my stomach hurt; the gas produced as the food passes through my system is excruciating. I mean, like, knives-in-your-gut, hold-your-breath-'till-it-passes, honestly-afraid-my-intestines-are-going-to-explode excruciating. I have a high pain threshold; this HURTS. I'm constantly nauseous, and even thinking about eating anything but the blandest food makes it worse. Here's a exhaustive list of the food I can tolerate eating right now: - Toast made from French Peasant bread (which is literally just flour, water, yeast and salt) - Toast with hummus - Toast with vanilla lowfat yogurt - Instant mashed potatoes with a fried egg on top - Lean Cuisine frozen macaroni and cheese Seriously, that's it. This. Is. A. Drag. I'm in pain, exhausted, uncomfortable and cranky. To top it all off, my ability to regulate my internal temperature has gone out the window. Blink and you might have missed it, but among the litany of organs I've had removed over the past two months was my remaining (left) ovary. Sometime in the afternoon of Monday, January 8th, I abruptly - so abruptly that I would be tempted to write "literally" if I were not morally opposed to the improper use of word - hit menopause. Given everything else going on, I haven't fully been able to take stock of all the subsequent changes in my body, but among them has been the onset of hot flashes and night sweats. It seems silly to complain about something so routine and minor in the midst of a battle against cancer, but this is my designated complaining minute, so I'm going to take advantage of it. These moments when my body decides to spontaneously combust are distinctly un-fun. Given than I've spent most of my life being cold, I admit that there are times when I kind of appreciate the warmth, but the fact that you can't turn the thermostat down once you've hit boiling really hinders the enjoyment. All right, complaining minute is up. Back to looking on the bright side. There are a couple of other things I've been able to eat in addition to actual food. My old friend Leland Hart sent a couple of boxes of all-natural, nutritionally enhanced (with B-vitamins and electrolytes) freezer pops. They're astonishingly tasty and refreshing, and have been a godsend during those times when I literally could not get anything else down (not to mention during the hot flashes). Another old friend, Skip Philippon - also a cancer survivor - sent a package of super healthy protein shake mix. My stomach was not thrilled at the thought of trying the stuff - all it wants is simple carbs - but since I'm starting to look like a contestant at the end of forty days of Survivor, but without the tan or the muscles, I decided it was time to overrule my stomach and take action. I've managed a shake a day for the past few days. The chocolate flavor is yummy, and my gut has tolerated it better than I'd feared. Most importantly, my body and brain are incredibly thankful for the fuel. Although it's slower than I would like, I *am* making progress. I'm trying to be patient, and take care of myself. Emotionally, I'm keeping my head above water by reminding myself, repeatedly, that this is temporary. This is what I expected. This is sucky part. This is the part I have to get through in order to get to the part where I'm okay. And, sucky as it may be, it still beats dying of cancer. 2. So Now What? Dr. Nash has been clear, from the beginning, that given the aggressive nature of this cancer, regardless of the outcome of any surgeries, he STRONGLY recommends a course of intravenous chemotherapy. His rationale is that not seeing evidence of additional cancer doesn't mean it's not there. Even after HIPEC, microscopic cancer cells can remain; all it takes is one remaining cell to start the process. Dr. Reidy, my medical oncologist - and virtually every other oncologist I've spoken to - agrees. I understand the argument, but I have some serious reservations. My biggest question is whether it's worth the risk of subjecting myself to six months of systemic poison to eliminate cells which may or may not even be present. Especially since even if every trace of cancer is eliminated, there's still a high probability that my body is going to produce more cancer cells in the future. Rather than doing it now just to be on the safe side, why not wait until there is actual evidence of disease activity, as documented by a rise in my cancer antigen markers? Also, since the most effective systemic chemotherapy agent can only be used once, doesn't it make sense to wait and save the "nuclear option" for when I really need it? For now, anyway, the discussion is moot. I am nowhere near ready, physically or emotionally, to start a course of chemotherapy. At the very least, I need to be able to eat, and to get back up to my normal weight. Also - SURPRISE! - I have to go in for yet another procedure first. Yes, I'm serious. Yes, it will be the fifth one in three months - but who's counting? During my colonoscopy, Dr. Calo found one polyp. It looked benign, and its location, on a blood vessel, made removing it difficult, so she left it, with the recommendation that I have regular follow-ups. However, because appendiceal cancer is considered a colorectal cancer, Dr. Nash doesn't want to take any chances. He wants me to come in so he can remove it, in the OR, but as an outpatient, "as soon as you feel up to it". That would be never. Never is when I'm going to feel up doing yet another bowel prep, and another round of general anesthesia, and another surgical procedure. At least that's how I feel. In reality, it will be sometime early next month. After we get the results of THAT, maybe I'll be ready to make a decision about chemo. I'm looking forward to the sucky part being over. I've lost track of how many attempts I've made to write a blog post in the past month.
I really wanted to write something before surgery, but in the two weeks leading up to the Big Event, I was running around like a decapitated chicken, trying to get all the pieces of my life in order. I was so wired, and felt like I had so much to do, I just could not get myself to sit down and write. Also, my anxiety about what was going to happen was through the roof, so I was trying to avoid thinking too much about it. The procedure - laparotomy and intraperitoneal chemotherapy - happened, as scheduled, on February 6th. I thought I'd be able to write something during my time recovering in the hospital, but it turns out that it's impossible to be alone, or to go more than an hour without a medical staff person pestering you for vitals or wanting to stick you with sharp things. Plus, truth be told, I was a little tired, and it was kinda hard to focus. Then I came home, where I was sure I'd be able to finally write... but for the next couple of days my house was still full of people, and I was still depressurizing. The words were just not happening. This is my fourth day home. My parents went home yesterday morning. Things are finally quiet. It's just me, my animals, and my boyfriend, David, who is hanging around to "keep an eye on me" (so my mother can sleep at night), run errands (since I can't drive yet), lift heavy things, and bring me stuff when I'm just too freaking tired to get up off the couch again. I finally have a little time, space, and brain availability to think about everything that's happened in the past month. So let's review, shall we? 1. Before Just after my last blog posting, I finally got the official pathology report. It was... sobering. It was all information I already had, but there was something about seeing it in writing, in a formal, clinical, format, which made it hit home in a whole new way. Name: Bernstein, Jessica Procedure: Appendectomy Diagnosis: Adenocarcinoma ex-goblet cell carcinoid tumor Histology: Signet ring cell type Tumor size: Difficult to determine due to disbursed pattern of tumor growth (estimated to be greater than 3cm) (Note: Appendiceal tumor size is another indicator of prognosis, anything greater than 2cm being on the negative side of the equation.) Proximal Margin: Involved by invasive carcinoma Lymphovascular Invasion: Present Perineural invasion: Present Staging: Primary Tumor (pT): T4a: Tumor invades through the visceral peritoneum, including the mucinous epithelium involving the serosa of the appendix Regional Lymph Nodes (pN): pNX: Regional lymph node cannot be assessed Distant Metastasis (pM): pM1: Distant metastasis based on prior material Overall: Stage IVb Yikes. Of course, having already made the decision to have the laparotomy, seeing the official report didn't really change anything; it just made shit get unavoidably real. The time leading up to surgery was a blur of more appointments, more testing, and a whole lot of dealing with logistics (i.e. setting up a week-long, two-shift-per-day schedule for dog care). I was also - when not studiously trying to avoid doing so - contending with some genuine and substantial fear. I am, as anyone who knows me knows, an old hand at surgery - the patient part of it, I mean. I've been under general anesthesia enough times that I don't find the idea of having an operation, in the abstract sense, worrisome or scary. But this time was different. This wasn't a routine procedure, using minimally invasive techniques. The only other open surgery I've had was a Reverse Total Shoulder Replacement two years ago. That was no small thing, to be sure, but there is world of difference between a six-inch incision in your shoulder and having literally your ENTIRE ABDOMEN opened up. Logically, I could look at the situation, and the statistics, and tell myself that the chances were extremely low that anything would go horribly awry. and if they did, I would be in extremely competent hands. The odds were that everything was going to turn out fine. The miracles of modern medicine notwithstanding, however, there is something incredibly counterintuitive about the idea of letting people knock you unconscious, slice you open, poke around for a while - maybe taking some pieces out in the process - and then filling your belly with highly concentrated poison. I was worried enough about the possibility of... a negative outcome that, two nights before surgery, I felt it necessary to write a "Just In Case" letter, detailing things like passwords, how all the house bills get paid, and what should be done with all my worldly possessions - and, more importantly, my animals - in the event of my death. It was an intense process, to say the least. Somewhere in the middle of it, David messaged me to see how I was doing. "Sad and little scared," I responded, being uncharacteristically candid about feelings I don't like to admit to having. "I hate that I'm not there," David messaged back. David is a skydiving tandem instructor. When one lives in the northeast, that means either finding other work during the winter, or doing a seasonal (or sometimes longer) migration to places where it's warm enough to jump in January. This past year, David's been living on the big island of Hawaii. He came back here for my hysterectomy, and then ended up staying several extra weeks when my simple surgical procedure suddenly turned into a much bigger deal. He had finally gone back to work, grudgingly, a few weeks earlier, under threat of losing his job - and my telling him that although I loved him, having him (or anyone) in my house 24/7 for weeks on end was driving me to the brink of insanity. This was just before I'd made the decision to do the laparotomy. Since I'd actually scheduled the procedure, he'd been struggling with the idea of not being present to support me through it. I'd struggled with it, as well, but was convinced that I'd be okay, and that it wasn't worth his risking his livelihood just to watch me be uncomfortable. I texted back that I hated his not being here, too, but it was what made sense right now. Then I went back to describing what I want done with my ashes after I'm cremated. A few hours later, I heard my Messenger chirp. It was 1:30am. I looked at my phone. David had sent a picture of himself. On a plane. Not the jumpy kind. "Where are you?" I texted, disbelieving. "On a plane," he answered, annoyingly. "Right," I responded. "But why?" "It was faster than swimming." He had to send me a picture of his boarding pass before I actually believed him. And then he had to reassure me that he was going to find his own way from the airport to New Paltz, and not add to my stress by making me schlep to LGA and back, before I allowed myself to get excited about his return. David's presence added to my already-substantial entourage. The night before surgery, my best friend Mika, my parents, and my twin brother Chanon all arrived from Vermont. Mika stayed at my house - as she would for the rest of the week, schlepping back and forth between the city and New Paltz so that I didn't have to worry about my animals being alone at night. My family, after stopping in to say hi, continued down to the city, to a hotel near the hospital. These arrangements had been a subject of some debate between my mother and me. And by "some debate", I mean a full day of emotionally-laden emails, texts, and phone calls. Both of us respond to anxiety by wanting to control all possible variables. My mom wanted me to spend the night in the hotel, so that I would be close to the hospital, and she wouldn't have to worry about last-minute travel catastrophes making me late. I wanted to spend what I knew probably wouldn't, but still nonetheless might, be my last night on earth at home, with my animals. Besides, I was going to have to go through yet another dreaded bowel prep, and who the hell wants to be shitting their brains out in a hotel room with their parents? For that matter, who the hell would want to share a room with someone doing a bowel prep? (Remember that question. It's foreshadowing.) I told my mother that we'd all be happier if I were home. I reassured her that I was a big girl, metaphorically speaking, and that Mika and I had done this twice before; there was no way were were going to be late for my surgery. Eventually, she conceded. Surgery was scheduled for 7:30am, with a 5:30am arrival time. At way-too-fucking-early-o'clock, Mika, David and I headed down to the city. We arrived at the hospital with a good twenty minutes to spare. No sign of my parents and brother. A few minutes later, the nurse came out to bring me back to get ready. As we headed toward the pre-op room, my anxiety, paradoxically, dissipated. Part of it was that the pre-surgical routine is familiar to me. I'd had three procedures in the past three months, two of them at this very hospital; this really wasn't my first rodeo (it was just a way bigger one). Part of it was the competence and confidence with which the MSKCC staff present everything. What I was about to go through was a unique and intense experience for me; for them, it was just Tuesday. Probably the biggest part, though, was that much of the anxiety had been anticipatory; now, the weeks of waiting, wondering, and worrying were FINALLY over. Time to get this thing done. I got changed, got my vitals checked, and had an i.v. line inserted. They also inserted an epidural catheter into my spinal column, right around T-8, to provide a local anesthetic to my entire abdomen before, during, and after the operation. (A quick word here, from a surgical veteran, about nerve blocks: THEY ARE FUCKING MAGIC. I've had surgeries without nerve blocks, and with them, and oh my god, do they make a difference in recovery. More on that later.) It was 6:30am and I was ready to go. Mika and David were at my bedside, but there was no sign of my family. I called my mom's phone. Her sleepy voice answered. "Hello?" "Hi Ma. Where are you?" "Hi honey. I'm at the hotel. Where are you?" She was still asleep, the situation not quite registering. "At the hospital. I'm in pre-op." "What? You can't be. It's..." the realization dawned, "OH MY GOD! What time is it?!!??!" I got a little more enjoyment out of this delicious little irony than I probably should have. Had they not gotten there in time to see me before the surgery, it would have been less amusing, mostly because I know my mother would have been devastated. ("No," she corrected me when I made a comment to that effect later, "I just would have marched into the operating room, raised my arm, and said, 'Hold it! I want to see my daughter.'") (You understand, now, where I get it from, right?) However, my family did arrive in time for the requisite pre-surgery hugs and kisses. They, and I, also got to say hello and thank you to my beloved friend Paula (a.k.a. Tina) Freitas, who was, for the third time in a little over a month, serving as my anesthetist and guardian angel. Tina had come out to see me prior to the other procedures, to reassure me of her presence and watchful eye. This time, she actually escorted my gurney down the hall and into the OR, before sending me gently off into la-la land. Again, I can't think of anything more comforting. 2. After I woke up (Yay! I'm alive!) to the news that everything had gone exceedingly well. Dr. Nash hadn't found any more tumors, though he had biopsied a boatload of tissue, as well as one suspect lymph node. He had removed my cecum - the pouch which connects the large and small intestines, to which the appendix is attached - to clean up the proximal margin from the previous surgery, and remove any potentially cancerous tissue which might be remaining. I was also informed that, as I'd hoped, I'd received HIPEC - the one-time, super-high dose of heated intraperitoneal chemotherapy (what I had been referring to as the "spa treatment" chemo) - as part of the clinical trial in which I'm participating. That meant no abdominal port in my side, and no further IP treatments; I just had to focus on recovering. If I'd been blogging regularly, there are several anecdotes I would have related contemporaneously about my time in the hospital. But given that I'm writing this in retrospect, and I'd like readers to actually be able to get through the whole thing, there's really only one incident that bears relating. It happened the second night after my surgery. Mom, Dad, Chanon, David, my honorary brother Steve Frankel, and I were hanging out in the hospital room, chatting. (Mika, bless her, had started the trek back to my house to feed the dogs.) All of a sudden, from the other side of the curtain in my shared room, there was an enormous SPLOOOSH! sound. I froze in horror, knowing exactly what must have made that noise. David, unaware of what was going on on that side of the room, said to me later, "I saw the liquid coming across the floor and thought, 'I really hope she spilled her soup.' Then the smell hit me, and I thought, 'I really hope she spilled her soup, and then farted.'" (Remember that foreshadowing?) What flashed across my mind the moment I heard that sound was the knowledge that the woman on the other side of the room was in the process of preparing for her own surgery, scheduled for the next day. I was, in fact, sharing a room with someone doing a bowel prep. Because she's 84 years old and doesn't move that fast, the staff decided to give her a portable commode, and leave it next to her bed, rather than having her walk the 8 feet across the room to the bathroom. I wasn't psyched about the situation because I wasn't enthralled at the idea of listening to, let alone smelling, someone have projectile diarrhea for hours on end. Little did I know that that situation was benign compared to the disaster which was actually looming. I hadn't ever heard the sound of a portable commode collapsing and spilling an entire evening's worth of bowel prep all over the floor, but as soon as I heard the noise, there was no question that that was what it was. Sure enough, looking down, I saw a tidal wave of shit coming our way. My family valiantly grabbed towels, sheets, and anything they could get their hands on to hold back the flood. They threw down their makeshift dyke, leaving me a narrow band of dry floor for my safe passage, and then said the fastest goodbyes I've ever seen a group of Jews make before beating a hasty retreat back to their hotel room (or anywhere they could go to get away from there). There were no empty rooms I could be moved to, so David and I spent the next three hours in hallway - me on a stretcher, him in a chair - while the "Environmental Hazard" crew went to work. They seemed to do a relatively thorough job, even going so far as to change the mid-room curtain and all the bed linens. In a professional touch which betrayed the fact that they've probably had to deal with similar catastrophes before, they also sprinkled peppermint essential oil around the room, leaving everything smelling minty fresh. We chose to willingly suspend our disbelief, and accept that the room was tolerably clean, but I still changed my socks after every time I got out of bed to go to the bathroom. The rest of my stay in the hospital was, by comparison, uneventful. To my happy surprise, the pain, although admittedly uncomfortable, was not unbearable. The catheter delivering the epidural stayed in place until the middle of the third day after surgery. The local anesthetic isn't quite as effective as the axillary nerve block you would get for an appendage, where everything is completely numb, but it does a fantastic job of turning the volume down to where the sensation is tolerable. Since I came off the epidural, I've just done very low doses of Tramadol and Tylenol, at increasingly longer intervals. Now, a little more than a week post-op, I'm down to once a day, if I even remember to take it at all. I also have a lot more mobility than I anticipated. I was able to get out of bed - albeit awkwardly and gingerly (no pun intended) - and was up and walking just a few hours after surgery. I managed just one slow lap around the unit floor that night, but by the end of the second day, I'd covered nearly two miles' worth of repetitive circles, aided only by my i.v. pole. Sitting up was painful at first, but got easier surprisingly quickly. Contrary to the visions I'd had of weeks of having to hold my torso rigid for fear of splitting open at the seams, I can actually move around fairly normally. Bending, sitting up, and leaning over are all doable, although definitely not what you'd call comfortable. The only consequence of the procedure that has ended up being worse than I'd expected is the effect of the chemotherapy on my gastrointestinal tract. It turns out that human innards don't actually like being stewed in heated, highly-concentrated, super toxic liquid (a friend of mine referred to it as "poison soup") for extended periods of time. In fact, they often respond by going on a brief hiatus - not actually leaving, of course, but temporarily going completely out of service. As is the case with most abdominal surgeries, producing a bowel movement and being able to pass gas were the requirements for my hospital discharge. I achieved those milestones quickly, and was on my way home four days after surgery. (It was my goal to match or beat the existing record for shortest stay post laparotomy/HIPEC. I did.) However, functioning does not mean functioning normally. Without getting into the gory details, I'll just say that, right now, both consuming and digesting food are painful, and I'm not able to do a whole lot of either. However, I'm seeing daily progress, and I'm assuming it's just a matter of time before all systems are fully "go" again. I'm guessing I should be feeling something resembling normal by this time next week. 3. What does any of this have to do with ladders? There is a Joan Armatrading song, I'm Lucky, which has been playing on repeat in my mind for the past couple of months: I'm lucky I'm lucky I can walk under ladders Yes I'm so lucky that I'm as lucky as me Two months ago, completely out of the blue, I was diagnosed with a rare and aggressive metastatic cancer. Overnight, I went from a relatively healthy person with a higher-than-average life expectancy to someone with a cancer which kills 93% of the people who are diagnosed with it within 5 years. That was terrifying and life-altering diagnosis, to be sure, but not getting it would have been worse. If I hadn't decided to finally have the hysterectomy - which had been recommended long ago, but I had been putting off for years - I wouldn't have known that I had cancer until it was too late to do anything about it. I wouldn't have made it to my 55th birthday. At the time of my diagnosis, neither the primary site nor the extent of the cancer spread were known. The cancer could have started in my colon; I, like my roommate with the commode malfunction, could be shitting into a bag from now on. The cancer could have started in my stomach, in which case I would have been taking in nutrition through a feeding port for the rest of my very short life. The cancer could have already spread throughout my entire abdomen, to the point where treatment wasn't even an option any longer. But none of those things happened. When I was 13, I fell about 30 feet, headfirst, out of a tree. I landed on my hands, and then my face; my legs went backward over my head. I broke both my arms, and exploded my shoulder sockets (leading to multiple shoulder surgeries throughout my adulthood, and eventually a reverse total shoulder replacement at the highly unusual age of 45). I also, as I found out many years later, broke my neck. I could very easily have been paralyzed, or even killed. But I got up and walked home, feeling like the wind had been knocked out of me, but totally unaware of what was broken, or how much else could have gone wrong. When I was 28, I went to visit my friend Krista in Portland, Maine, in February. A winter storm hit the morning I was scheduled to head home, but I had to get back to Burlington, so I decided to drive through it. After 6 hours of white-knuckled terror, I wanted to take a break. I saw a rest area, and lightly touched my brakes to slow down. My tires locked up in the slushy mess, and I started sliding into the passing lane. I looked up just in time to see the 18-wheeler as it came plowing into me, crashing into the driver's side of my vehicle, less than a foot beyond the windshield. It tore off the front end of my little pickup, and sent me spinning, backward, across two lanes of oncoming traffic - which could not stop - and into a snowbank on the opposite side of the highway. I opened up my door, and stepped out of my mangled truck, knees shaking so hard I could barely walk, but totally uninjured. When I was 37, as I was driving back to my house in rural Connecticut late one cold winter night, I hit a patch of black ice. The road curved, but my car went straight. I went over an embankment, rolled twice, and crashed into a tree. My car was totaled. Once again, I walked away without a scratch. Two years ago, I was coming in for a landing after an uneventful skydive. The winds were funky - I shouldn't have been jumping in the first place - and I had to make some last-minute course adjustments. As I approached the ground, I passed downwind of a tree; the resulting turbulence dropped me straight down, from a height of about 20 feet. I received a severe compression fracture of my T-12 vertebra, end plate fractures of T-10 and T-11, and I sheared off the transverse processes (the little arm-like thingies) on L-1 and L-2. I spent six days in the ICU, and then six weeks in a full-torso clamshell brace. I lost an inch (not something I could really spare, having started at 5'3"), and a good bit of flexibility in my spine... BUT I can walk, run, hike, do (modified) yoga, and most importantly, skydive. There are at least a dozen other stories like this that I could tell. Like the negative space/positive space pictures of the cameo faces bracketing a vase, there are two ways to view any of these anecdotes. You can either say that bad shit seems to happen to me a lot, or that I seem to have an incredible knack for dodging bullets. I choose to believe the latter. I got a call yesterday morning from Dr. Nash's nurse, Ellen. She told me that other than the tissue from the end of the cecum where my appendix had been - which we already knew had cancerous tissue from the tumor margin - all of the biopsies were negative. There is no more cancer visible anywhere in my abdomen. This doesn't mean, of course, that I'm out of the proverbial woods. There is still the very real possibility of microscopic cancer cells. Both Dr. Nash and Dr. Reidy, my new medical oncologist, highly recommend a course of systemic chemo as soon as I've recovered from this procedure, in the hope that that will kill off any remaining disease which is, as yet, too small to detect. (That decision will be the subject of my next post.) As I've mentioned, this cancer has an extremely high recurrence rate. Even if we do manage to completely eliminate it now, the likelihood is that it will return. Chances are that this will not be my last battle, or even close to it. But that's something to worry about down the road. As of right now, I'm doing okay. I'm a magical fucking unicorn, and I can walk under ladders. Mother of GOD it has been a long week and a half! Much has happened since we last left our unicorn, contemplating her diagnosis and pondering various treatment options. I haven't really planned out how I'm going to explain it all, but I have a sneaking suspicion that this is going to end up being a long post. (Even longer than usual, I mean.) However, since I know that there are people who don't have the patience, or attention span, to read all the way to the end, and I don't want to bury the lead, I'll start at the place I ultimately ended up, and then go back and explain how I got here. Kind of like a Guy Ritchie movie, but without the kickass soundtrack.
First, a quick recap of last week's episode, just to set the scene: Twelve days ago, I had another laparoscopic surgery, to remove my appendix - the site of the suspected primary cancer - and my remaining (left) ovary. The surgery did, in fact, reveal a small tumor in my appendix, as well as two questionable spots in a humorously-named dark recess at the back of my pelvis, which were biopsied. I was waiting for the pathology report before scheduling the next recommended step: another abdominal surgery, to hunt down and remove any other cancerous lesions, and to administer localized chemotherapy directly into my abdominal cavity. The big question was: should I have the surgery done laparoscopically, adding another collection of small incisions to my multiply-scarred-but-still-mostly-intact belly, or should I let the doctor split me open like a ripe melon, from my sternum to my pubic bone? The salient points on either side of the debate were an exponentially shorter recovery time, versus the opportunity to do a more thorough examination, possibly discovering and removing more cancer, respectively. I had initially been pretty adamant that I wanted to go the minimally invasive route, but I was waffling. Fast-forward to the Big Reveal: Although the final pathology report is STILL not in (unicorn cells are apparently ridiculously hard to classify), I have been given an official diagnosis: stage IV appendix cancer, as suspected. (There is a hopeful footnote to that diagnosis, but since it doesn't make a difference in terms of treatment, I'll save that explanation for the details section.) On February 6th, I will be having a full, open laparotomy (that's the split melon one) followed by intraperitoneal (IP) chemotherapy. The surgery itself should take about five hours. They'll either administer the chemo all in one fell swoop directly after surgery - which will add about another two hours to the process - or I'll get it in three smaller doses, over the course of the next three days. (I'm participating in a clinical trial, so which of those methods I get will be determined by random selection.) I'll spend around a week, give or take a few days, in the hospital post-surgery, while my body processes the chemo and my bowels regain their footing. Then I'll return home for another six weeks or so of recovery. Since I am - immodestly, but truthfully - a champ at bouncing back from surgery, I'm hoping that both the immediate and and extended recovery periods will be shorter than expected, but I don't want to set myself up for disappointment by cavalierly assuming that this is going to be a walk in the park. I'm pretty sure, in fact, that the next few weeks are going to suck. But the trade off for short-term suck is the increased chance of longer-term survival, so it seems like a worthwhile undertaking. (I'm sooooo tempted to add a mortician pun here, but it throws off the rhythm of the sentence. Cadence trumps humor, at least in this case.) Okay, for those with short attention spans, you've gotten the scene setting, the denouement, and the basic facts; you can now go back to surfing social media. For anyone interested in more detail, here is the unabridged version: I thought that making the decision about which surgical route to take would be a difficult one. At first, it was. I felt very conflicted. I'd started off insisting that I wanted to do the surgery laparoscopically if at all possible. I was concerned about subjecting my body to the trauma of an open surgery; moreover, I was NOT psyched about the prospect of an extended recovery, involving weeks of being confined to horizontal surfaces. (I do not do "sedentary" well.) However, when I stepped outside of my own perspective, and started thinking about it from point of view of the people who love and are worried about me, the picture started looking very different. Several friends offered opinions - unsolicited, but genuinely appreciated - which contributed to my evolving perspective. The gist of all of them was that not doing the open surgery just to avoid the discomfort of the recovery, no matter how significant that discomfort might be, was short-sighted: a couple of weeks of being laid up was better than a long time of being dead. Point taken, but I was still having a hard time truly believing that that was the dichotomy I was facing. As much as I understood the whole "aggressive, high-grade, stage IV cancer" thing intellectually, I just could not grok that those words actually applied to what was going on in my body. I knew that I had had two cancerous tumors removed from my body. I "got" that the fact that there were two of them meant that the disease had, in all likelihood, spread from one organ to another. I could comprehend that metastasis means that the cancer is, essentially, annexing territory, and therefore presents a much more widespread threat of takeover. However, although the tumor on my ovary was fairly large, the primary tumor in my appendix turned out to be pretty small; both had already been removed. Despite what we'd feared we'd find in my abdomen, the spread of the visible disease seemed, so far, to be minimal. My interpretation of this information was that the threat the cancer presented was more theoretical than actual. This cancer COULD be dangerous, but since there didn't seem to a whole lot of it present, at least not any more, I reasoned that the danger wasn't really THAT high. Since the actual cancer situation wasn't so bad, the treatment didn't need to be so gung-ho, either. Then my friend Jenn Bocker gave me a metaphorical slap upside the head, and knocked some sense into me. I know Dr. Jenn from skydiving, but in real life, she's an oncologist. She's also exceedingly smart, and has a low tolerance for idiocy. (Goofiness, yes; stupidity, no.) Her message to me was loving, but direct. In much kinder words, she said, essentially, don't be moron. Speaking from real-life doctor experience, Jenn explained that this cancer was not to be underestimated. She said that she'd seen even a small tumor spread quickly, and "riddle an abdomen with disease." More importantly, she pointed out that the way I was thinking about treatment was backasswards. (My wording, not hers.) Contrary to my logic, less obvious disease progression doesn't mean you do less intervention. Instead, it's a rare opportunity to get a strategic advantage. "I would hit this up front hard and fast while you have the chance to beat it," Jenn said. "You appear to have a chance to get ahead of this cancer more than most who are diagnosed. Take that chance and run with it." Her words struck a nerve. I realized that I have actually been underestimating my enemy; in fact, I really haven't been fully comprehending the battle I'm facing at all. Intellectually, I get it, but emotionally, I have not fully accepted that this is my reality. Even as I've been explaining to everyone else what's going on in my body, and what I'm going to do to fight it, there is a part of me that just does not believe this is happening. My inner skeptic keeps telling me that this can't possibly be real; I must be making it up in order to get attention. (I think it's an indicator of having spent too much time as a mental health clinician when your own mind starts accusing you of having Munchausen Syndrome.) The part of my brain arguing for the easier procedure is the part that keeps expecting to hear that this has all been a big misunderstanding, and I should just go back to my regularly scheduled life, already in progress. I can't make the voice expressing denial go away, but I can tell it to shut the fuck up, and let the logical side of me steer the ship. And so I had a stern conversation with myself: "This is your captain speaking. The cancer is real. I am fighting back. I am going to do the goddamn laparotomy." Decision made. That hurdle... hurdled, I continued to wait for the pathology results, so that I could schedule the surgery. I waited. And I waited. And I waited. Dr. Nash had said he expected the report by the Friday after the surgery, January 12th. When there was still nothing by Tuesday, the 16th, I started getting worried. I called Scott, Dr. Nash's assistant. "Is there something funky with my biopsies that's making the pathologist take so long to write the report?" I asked. "Oh, no," Scott reassured me. "It usually takes about a week. This is totally normal." "Are you sure?" I pursued, probably annoyingly. "Because the last time my pathology results were delayed, it was because there was something abnormal and very rare, and they needed to send it to a bunch of people to confirm it." "I'm sure it's nothing like that, " Scott said, soothingly. "The report should be coming in any time now." Appeased, I accepted his answer, and went back to waiting. *Crickets* I called again Wednesday morning. Still nothing. I was starting to get genuinely anxious. I had a feeling of foreboding: Garp's Undertoad lurking nearby. Late Wednesday afternoon, Ellen, the nurse in Dr. Nash's office, called. "We still don't have a final report," she said. "But we wanted to let you know that they have confirmed that it IS appendiceal cancer; they're just having a hard time nailing down the subtype." "I knew it!" I exclaimed. "I guessed that there was something abnormal they were having a hard time identifying." "Well," she said, "they're pretty sure they've identified it as a goblet cell carcinoma. There are just some discrepancies they're trying to figure out." All the blood rushed from my head. "Wait, what?!?!" I stammered. The anxiety which had been building for the past week and a half came pouring out in a torrent of questions. "That doesn't make any sense!" I protested. "The ovary was diagnosed as signet ring cell carcinoma. Is this a second type of cancer? Does this mean the appendix might not be the primary? Could there be another source we haven't found yet? The original diagnosis was 'metastatic ovarian signet ring cell cancer, favor gastric or appendiceal origin'. If it didn't come from my appendix, does that mean it came from my stomach? Could I still have an occult tumor in my gastric lining?" I inundated Ellen with inquiries, none of which she could answer. The poor woman had called me to give me information, so I could relax a little. Instead, she got minor hysteria and an interrogation. She said she'd have Dr. Nash call me, and beat a hasty retreat. Dr. Nash did call, a few (very long) hours later. He reassured me that two synchronous primary cancers is extremely unlikely, and that I probably did not have another cancer lurking undiscovered in my GI tract. He explained that tumors can contain more than one type of cancer cell, and it's possible for just one of those cell types to metastasize. He said that he would check in with pathology first thing in the morning (it was after business hours at that point), and have some kind of answer for our scheduled appointment the following day. It turned out there was STILL no report on Thursday, either. But Ellen came in during our appointment with an email from pathology, which had, at least, a final diagnosis. (I apologized for freaking out. She told me not to worry about it.) Reading the message aloud, Dr. Nash informed me that I have, officially, (drumroll, please) appendiceal adenocarcinoma ex-goblet cell carcinoid, signet ring cell type. As is my wont, I'd scrutinized Google scholar for hours after getting off the phone with Dr. Nash the night before. From my layperson's comprehension of medical journal articles, I'd gathered a basic understanding of how appendiceal cancers, which are different than cancers anywhere else in the body, are identified and categorized. I'd seen descriptions of this kind of tumor. As Dr. Nash had predicted, it contains two different kinds of histologically distinct cells: signet ring and goblet. Signet ring cells, being the more aggressive of the two, metastasize first; that's why my ovarian tumor was a signet ring cell cancer. I asked Dr. Nash if the fact that the primary cancer is a mixed cell tumor, instead of just the dread signet ring cell carcinoma, changed anything in terms of my assessment or treatment. Not really, he said. It's slightly less virulent than primary SRCC, but it's still very aggressive. It's still a high-grade cancer, with a recurrence rate of close to 100%. Like SRCC, this cancer, because it's so rare (still a unicorn!), doesn't have a standardized treatment protocol; the treatment which he would recommend is exactly the same. That established, we scheduled the laparotomy, and I started signing the consent forms. As I mentioned, I'll be participating in a clinical trial, comparing two different types of IP chemotherapy, HIPEC and EPIC. [For fellow medical geeks (normal-brained people, you can skip this part): HIPEC is Hyperthermic Intraperitoneal Early Post-Operative Chemotherapy. The chemo, which is highly concentrated, is heated to around 107 degrees F, and administered directly into the open abdomen after surgery. Your organs marinate for about an hour and a half, as you are rocked gently back and forth, like a baby in a cradle. Then, any fluid which hasn't been absorbed is drained, and you're sewn back up. EPIC is Early Post-Operative Intraperitoneal Chemotherapy. The concentrated chemo is introduced to your abdomen via a port, which is installed - usually on your left side - right after surgery. You get three doses, over the course of three days. Not sure about the rocking. Which method you get isn't determined until after the primary surgery is officially over, so I won't know which group I ended up in until I wake up. Thus far, there does not seem to be an appreciable difference in effectiveness between the two methods, so I don't care that much which one I get - but I'm kinda hoping for the HIPEC, because it sounds a little like a spa treatment, even if I won't be awake to enjoy it.] In addition to the clinical trial, I agreed to let MSKCC use any biological material or information they get from me, as well as my demographics, for research and study. I went home feeling pleased that in some small way, I was contributing to the greater good, patting myself on the back for my altruism. Once I got home, like a moth to a flame, I was sucked back into Google Scholar. There isn't a whole lot of information available on appendiceal cancer. There is really only one substantial study, frequently referenced in other articles, on the different subtypes of appendiceal carcinoma, and their respective behaviors. However, from this study, I did glean one hopeful bit of data, which shone like a ray of sunshine through an otherwise difficult week. Before offering the statistics, I caution everyone - including me - to take this information with a large chunk of salt, and remember a few caveats: 1) This is a retrospective study. There are no controls for variables like age, overall health, disease progression at the time of treatment, types of treatment, etc. 2) The sample size is small. It's hard to draw definitive conclusions from limited data. 3) Disease-related survival rates are not predictors of life expectancy. What they offer is an insight into how that agent of disease typically behaves. With that said, I've been looking at these numbers to get an understanding, in general, of how aggressive and dangerous my enemy is. Primary signet ring cell cancer, which I've been told for the past two months is almost definitely what I have, is ruthless. As I've mentioned, it has a recurrence rate of over 90%. The overall disease-specific 5-year survival rate is 7%. Let me reiterate that: only 7% of the people who are diagnosed with this disease are alive five years later. This is the number I've been living with for the past two months. I hadn't accepted it as my fate by any means, but it has provided me some idea of what I'm up against. By comparison, the closely-related-but-not-exactly-the-same adenocarcinoma ex-goblet cell carcinoid, signet ring cell type is slightly less ruthless. It has, you could say - and I will, because it amuses me - a little more ruth. The recurrence rate is pretty much the same, but the overall disease-specific 5-year survival rate is 38%. Again, to reiterate: 38% of the people diagnosed with this type of cancer are alive five years later. Almost 100% of them still have the disease, but they're alive. That may not seem like a number worth celebrating on its own, but it is more than FIVE TIMES the utterly dismal survival rate of the type of cancer I thought I had. I am, by nature, an optimistic person. However, I'm also a realist. And I don't like disappointments. In any given situation, I always want to know what the worst-case scenario is. I will, as the saying goes, hope for the best, but plan for the worst. I had no intention of dying in the next five years, but I had accepted that statistically, I was facing an uphill battle. It turns out that I still am, but instead of climbing Mt. Everest, I'm only climbing Mt. McKinley. (I have no idea if that comparison is apt, either, but you get what I'm trying to say: the insanely difficult climb I was facing suddenly appears less impossible - still really hard, but significantly more do-able. ) I know that I'm still in for a huge fight, but I genuinely believe this is one I can win. The worst-case scenario I've been preparing for feels like it's gotten significantly better. In fact, it feels like the best worst-case scenario possible. I'm not thrilled with that mountain-climbing metaphor, and I'm not entirely sure the last sentence works stylistically or logically, but I'm just going to leave it, because I'm really tired of writing - and I don't want to have to come up with another title for this blog post. I'll just end by saying I'm headed into this next phase of battle feeling strong and hopeful, and right now, I think that's the best I can ask for. |
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