My alarm is set. My bags are packed. My to-do list is checked off. I’ve eaten only liquids all day. I’m clean. I’m calm. I’m positive. All of my organs love each other. I am a liver. I will write again when i’m feeling up to it.
T-shirt from Threadless: “Hugs Keep Us Alive!”
There are a million different ways to prepare for surgery. One way is to not prepare.
Another way is to distract oneself with movies and friends until the day of, and that day is easy because you just wake up really early in the morning, go to the hospital, check in, wait for awhile, and then suddenly a million nurses and doctors are poking you and prodding you and getting you to sign forms and ripping jewelry out of your ear, and then they give you something to make you comfortable, and then you hug your parents, and then you wake up and it’s finished. At least, that’s how it went last time.
I need to actually prepare. Physically and mentally and emotionally and logistically. For both the surgery part and the recovery part. When I tell people that i’m busy preparing for surgery I wonder if they think this is just code for “I’m busy doing nothing.” Maybe it is. I’m 27 and I just graduated from graduate school and I should be looking for a job. But I can’t because when they call me for an interview i’ll be in the hospital. On morphine. Last time I was on morphine I had whole conversations with people in my head. That does not sound like a good way to get a job. My job right now is preparing for surgery. And after that, my job will be recovering from surgery. And after that, we’ll see.
If I don’t prepare, I imagine that my parents and the surgeon and the surgeon’s nurses whose names all start with the letter “K” and my oncologist will all have to drag me kicking and screaming into the operating room. It sounds like a movie. But that is how scary this feels. Everyone does keep saying this surgery is my choice. So maybe in the non-movie version of me not preparing for surgery, they might not drag me kicking and screaming, they might just say, “So you don’t want the surgery?”
Who wants surgery? I didn’t really get any other good treatment options, so I guess, in theory, I do. It’s scheduled. It’s happening.
So I prepare. I read books. I write down positive things I want to remember like, “This can get rid of SO MANY tumors!!” I make lists of people I need to email and call and things I need to do before the big day. I talk to my therapist. I try to remember the positive things I want to remember when negative things come into my head. I meditate. I listen to guided meditations about facing fears and being confident. I distract myself sometimes. I sleep. I hike. I rest. I try to gain weight. I try to only do things that I want to do and I try to only hang out with people that I want to hang out with.
I’m having a little trouble getting in the zone. I’m 27 and I just graduated from graduate school and I should be looking for a job. Not preparing to be out of commission for one to two months. Last time I didn’t know how long recovery would be–I thought i’d be able to return to school 14 days after surgery. I was barely out of the hospital 14 days after surgery.
This is why I’m preparing. My goal is to be able to deliver myself calmly to hospital admissions on the day of the surgery. And, get myself calmly through all my days leading up to surgery. If I am calm enough, I might get out of the hospital sooner and recover quicker because of it. They say things like this happen.
It might not sound like it, but I think the preparing i’ve done so far is working. I’m feeling a little better, a little calmer, a little more confident everyday. Maybe i’ll even be happy and calm when I wake up on the day of the surgery. This surgery is scary, yes. But it also has the potential to be really good for me. Not quite curative, but at least closer.
One of the first questions I asked my surgeon yesterday was “Will my new scar be in the same place as my old scar?”
Nevermind that i’m there to talk about having parts of my insides cut out of me (even if they’re only tumors): I want to know what my stomach is going to look like once this is all over. Will I have lines crisscrossing my belly or will he be able to preserve the now fading Mercedes symbol healing into my stomach? Will he use staples or stitches? Will I ever feel comfortable wearing a bikini again?
Amid talk of blood transfusions and drains and bile leakages and scooping tumors out, it’s just more manageable, more palatable, to talk about something tangible. Something shallow.
Similarly, I’ve heard breast cancer patients debating the merits of choosing a surgeon based on whether they recommend a vertical cut or a horizontal cut. How else does one decide? Sometimes the most shallow-seeming details on the outside are the easiest to weigh.
Surgery is a huge and multi-faceted topic. It’s overwhelming for me to think about pre-surgery, during surgery, and post-surgery at the same time without getting stressed out and scared. Last time I focused all of my energy on not panicking in the days leading up to the surgery, during the pre-surgery prep, and in the moments before I was put to sleep. All of this went well: I didn’t panic But it didn’t occur to me to prepare myself for how I would feel when I woke up and how long and hard and uncomfortable the recovery process would be. I don’t know what I should do to mentally prepare this time around; every time I try to think about surgery I get stressed out and scared.
Maybe if I can just isolate the scar, and focus on being OK with the fact that my scar won’t change. That he will use stitches instead of staples. That because i’m still young my scar will probably heal cleanly again. Then maybe I can be OK with having surgery again.
My most popular post last year was the housekeeping post I wrote in October 2011 to explain my diagnosis in further detail. This post, as well as my About page and Updates page, were getting a little out-of-date. So I deleted my Updates page, made my About page more in-date, and i’m writing this post to replace my prior housekeeping post (now called “housekeeping: part 1″).
It occurred to me that because my posts are so vague, it’s difficult for my readers to tell what is going on with my treatment. I don’t like to give too much detail because A) it’s not necessarily my intention to give treatment advice to fellow pancreatic neuroendocrine cancer patients–everyone’s case is different–and also because B) this blog is primarily a place for me to talk about what it’s like to live with cancer as a 20-something year-old woman. The details about my diagnosis and treatments are almost secondary to the fact that i’m trying to live my life with this disease. Still, I would be curious if I were you. So I invite you to read on and to ask me questions via email or in the comments.
My boyfriend tells me that the most frequent question he gets when he tells people is: “Wait–she still has cancer?” Yes, if you haven’t gathered that already, I still have cancer. It is possible to have cancer for many years and not die from it or get cured. I started feeling symptoms almost three years ago and I was diagnosed two years and two months ago, but I have probably had it for many more years than that. When I was diagnosed I had a primary tumor in my pancreas and metastasis in my liver. I had surgery two years ago to remove many of my tumors but there are still some left in my liver.
My cancer is considered chronic. It is something the doctors say I can live with for a long time (I am a liver), but at the moment there is no treatment that is likely to send it into remission. When I am not actively treating it, it is growing, so over the past two years I have tried three different oral chemotherapy regimens in an effort to keep it from growing and, if i’m lucky, to shrink it. One regimen didn’t work, one worked really well for over a year, and the latest worked half-heartedly for six months.
Right now my tumors are growing because i’m waiting to see what comes next. I’m starting to feel some of my early symptoms again, like nausea and the food pickiness that came with it, and the small pain that has been present off and on since last year at this time.
The timing of this post is fitting because it is a new year and it seems that I have now reached another turning point in my treatment.
Instead of my oncologists reaching for the next drug they can prescribe, they are talking more seriously about the “other” treatment options. These include the “ation” procedures I have previously mentioned (here and here). These are achieved through interventional radiology; one of my oncologists calls them “locally destructive,” meaning they target the tumors that remain in my liver with either chemo or radioactive microspheres. You may remember that liver transplant was on the table at one point. It doesn’t really seem like it’s an option anymore.
They are also talking more seriously about what seems to be the most promising of all treatments for certain types of neuroendocrine tumors (NETs): peptide receptor radionuclide therapy (called PRRT). The fact that it is not yet approved by the FDA and offered at only a few centers around the world, most of them in Europe, makes it sound even more exciting and mysterious. The fact that it is not covered by insurance makes it sound impossible, because it is expensive. But it is so promising that a lot of NET patients scrape together the money to do it and it will hopefully soon be offered at lower costs to more patients through well-funded clinical trials. I will write about this more when the time comes.
But now, for the first time since my last surgery, my doctors are talking about doing more surgery on my liver. Knowing everything I know now about surgery having already been though it once, the thought of going through it again is jarring. But if my options are that or deserted island, I will probably pick that.
After two years of juggling cancer and grad school, I have now finished grad school and am left with just cancer… and a master’s degree.
I will get a job before too long. But right now, it’s noon on a Tuesday, and I don’t have much to do. After spending the last three weeks straight working 10 or more hours per day, not to mention all of the time I have spent on and stressing out about group projects and papers and presentations and learning computer programs and doing my master’s project and studying for finals over the past two years, it’s a relief to be able to just sit here with my breakfast (because I woke up late) and my tea, writing a blog post.
Grad school was hard. Really, really hard. Cancer tried to get in the way more than a few times. And I have written about it more than a few times. But thanks to some flexibility from my professors and graduate adviser, and some help from my classmates, and some support from my family and friends, and some hard work by myself, I managed to finish anyway. Because I graduated a quarter later than the rest of my classmates, there was no fanfare when I finished my last final on Friday. I zipped up my backpack, left the quiet test-taking room, said goodbye to my graduate adviser (and got confirmation that I am actually done), and walked out of the building.
I also feel a little relieved this morning for another reason. My latest scan results came back yesterday showing growth, so i’m off the drug I was on and onto the next thing. Maybe relief is a weird thing to feel after a “bad” scan, but this medication hasn’t been working all that well since I started it six months ago, so it’s a relief that the scans are finally showing it and the doctors are listening. Also, the cancer appears not to have spread.
I’m a little worried and afraid about what lies ahead. What graduate isn’t? What cancer patient isn’t? What liver isn’t?
My new treatment, whatever it ends up being, will involve some recovery time, it will involve some hospital time, whether inpatient or outpatient, it may involve a consultation abroad. I won’t have to worry about school anymore when and if I have to do these things, which is a welcome change. Despite how hard grad school was and how relived I feel to be done, I wish I was graduating from having cancer instead.
I went to see a different primary care doctor yesterday than my usual. I was prepared to give him my cancer elevator speech, but he came in, said, “Hi, I’m Dr. So and So. I just reviewed your medical history for the past couple years.” I was shocked. “Oh! It’s a long history.”
I think my shock says a lot about what two years in the medical system has done to my opinion of doctors. Or maybe just my perception of how much time and thought they put into my case when i’m not sitting right in front of them. Of course, they have hundreds of other, sicker patients. But my experience and my health is the most important thing to me–I want to believe that it’s the most important thing to them, too. When I was first diagnosed, there was a lot of activity going on behind the scenes, meetings being had, phone calls being made, slides being sent off all around the world.
Now I get surprised when a doctor does what he is supposed to to–something so basic as spend ten minutes reading my medical history before the visit, or even spend 5 minutes writing up a report after the visit. One of my oncologists, who I see now at least once per month reviews my history and dictates his report in the exam room, and I still don’t think he knows my case from the patient in the next room. During my transplant evaluation, only one doctor I saw read my history before the appointment. I feel a little betrayed. At the time, I called it a liver transplant conveyor belt. Now, maybe, i’m on the chronic cancer conveyor belt.
Don’t get me wrong. Pretty much all of my doctors are wonderful. But I am still learning how to talk to each one to get the most of out my short appointments with them. How to write emails or leave messages to remind them of things they’re supposed to be doing. How, to use an overused word in healthcare, to be my own advocate.
My parents and I learned the importance of this early on. It was my third appointment after I was diagnosed, when we were still learning the lingo and figuring things out. Now we look up diagrams of the mTOR pathway while we’re waiting for the doctor. Then, we didn’t know mTOR from velocirapTOR. My third appointment was with an endocrinologist expert who came highly recommended by my surgeon. The doctor comes in and we immediately start asking him question after question. We didn’t know anything yet, and we had a lot of questions. The doctor answered all of them, but he must have been a little annoyed, because by the end of the appointment we all hated him, and we didn’t feel like the appointment went how it should have.
We saw him a week later, and that time we had rules: Don’t hate him. Don’t ask questions until the end. Let him say what he wants to say first, then ask questions. Let the patient ask her questions first. Now, I like this doctor. I have actually run into him on campus or in the medical building on multiple occasions, and he always knows who I am and asks me how i’m doing.
We still adopt this strategy for most doctors we see. As for being my own advocate, well, i’m still figuring that out. I generally try to stay away from situations where I try to make the medical system do what it does not do automatically because I don’t like spending hours on hold, only to be told to call someone else, or that what i’m requesting isn’t possible. I think this is why my younger sister and my dad handle my billing and insurance now. (Thank you)
Sometimes, my strategies don’t work. I went back to see my old oncologist a few months ago and before the visit, I sent him a very direct and numbered email telling him what I wanted from the appointment. Three appointments and two months later, I finally got everything I had requested.
I called my new oncologist on Monday morning with a new side effect, and finally on Wednesday he got back to me with a prescription. Good thing I had already started treating myself and made a last-minute appointment with aforementioned primary care doctor. Who not only read my medical history before the appointment, but who also called me today to follow up like he said he was going to.
I think I need to go into my next appointment with, as much as it’s possible, a clean slate. And rules: Don’t hate him or the things that you know he’s going to do that annoy you. Let him say what he wants to say first, then ask questions. Make sure I get all my questions answered.
This guest post is from my old friend and now roommate LeeAnn. I think it speaks for itself.
There’s a scene in 50/50–it’s after the climax of Joseph Gordon-Levitt’s emotional breakdown in his best friend’s car, and just after JGL schleps said best friend, a very drunk Seth Rogen, back to Rogen’s home. With Rogen passed out on the couch, JGL gives himself, and his imminent surgery, a long, hard, tired stare in the bathroom mirror. Then, as he turns away, he catches a glimpse of a book on the sill next to the toilet: Facing Cancer Together: How to Help Your Friend or Loved One. Thumbing through it, he finds underlines and annotations, traces of the quiet, thoughtful journey that was belied–or maybe was just best expressed–by all of the profanity, inanity, and insistence on getting laid that were Rogen’s focus when they were together. As he flips through, we’re able to catch “Be There” as one of the underlined paragraph titles.
When your roommate has cancer, it is useless to not take a movie like 50/50 personally. It was tempting to try to identify who in the movie I might be–I ruled out “overbearing mother,” “awkward, tactless boss,” “cheating, failed artist girlfriend,” and “inexperienced, eager, therapist love-interest” pretty quickly. So if I had to compare, it would have to be with Seth Rogen’s profane, horny, and constantly inebriated childhood “close friend/colleague/driver” character. You’ll find out shortly which adjectives I fit.
I’ve known Lindsey since I was a sophomore and she was a senior in high school. She may be the only person in this world who has heard the moronic details of my love life semi-consistently for the last decade (it is stupidly satisfying to be able to make these grand temporal statements now that we are “mid-to-late 20-somethings”). We effectively share a birthday (1 day and 2 years apart). I succeeded her as Copy Editor of the high school paper and we shared a blog several years before the birth of this one. And now, we share (what I like to satisfyingly call) a home.
If you asked me on my birthday two years ago if Lindsey and I would ever live together, I would have said, unlikely at best. Partly because I was living in Pasadena with my boyfriend, and partly because she was busy on campus and staunchly car-less. If you had asked me then if I thought Lindsey would be diagnosed with cancer a week and a half later, I would have said, probably never, she is the non-smokingest, reasonably non-drinkingest, swimmingest, bikingest, sometimes vegetarian-ist, generally healthy-and-young-iest person I know. According to my mind’s statistics committee, these were not really concurrent events that I’d ever have to deal with. But two weeks later, on a call that we made in lieu of driving cross-town to see each other, she broke the news. And here we are.
The thing that I have always liked best about Lindsey is that she never puts up a front. She is never bombastic, never belligerent, but is always honest and unafraid of expressing herself, no matter the issue. To me, she has always been firm about herself, her strengths, and her goals, or at least she has always been articulate in her evaluation of whatever doubts she has. And since her diagnosis, I can’t but marvel at how level-headed and forward-looking she is. How much joy and time she takes in what she does. How good she is at making tamales. It’s not to say it’s all sunshine and rainbows–cancer and grad school and your mid-to-late 20s are no picnic no matter how good a blogger you are–but if Lindsey is pointing out the clouds, she does it without complaining about the rain. (This is a metaphor; she recently complained about Chicago rain). And she’s way less long-winded than I am. I told her the other day that she’s much more grown up than I am. It’s true. I want to support her, but more often than not, I merely find myself in awe.
Last month, after a particularly annoying day at the doctor’s, I offered to accompany Lindsey to her next doctor’s appointment a few weeks later, to make the long wait less terrible. When the day actually approached, I was unable to take the time off of work, and had to tell her that regretfully couldn’t make it. It felt terrible. There was my opportunity to “be there,” and I had to be at work instead.
I don’t have a copy of Facing Cancer Together. I don’t always know what to say when her appointments don’t go well. I have never commented on (though I do read) this blog. I know I am not her mother (covered), not her boyfriend (covered), not her sister (double-covered). But I know that missing that appointment was something I regret and it isn’t characteristic of the role that I play. In a way, I have underlined and taken note of my admiration of Lindsey’s blogs, articles, and poetry since we were teenagers. And I don’t for a second take for granted my role as a co-blogger, co-editor, tandem bike-riding partner, and roommate–no matter how profane, inane, or long winded, (and sure, maybe at times, inebriated) I may be.
I have another video. I’m not asking for another date in this video… I don’t think my boyfriend would like that. But if you stick it out til the end, I do ask for a job. My master’s degree will be in urban planning, but my heart, more and more, is in doing something with all of this health care experience i’m getting. I’m 27 now after all and about to graduate–i’m all grown up. This is the video that I promised to post, the video of my speech at the Health Care Social Media Summit put on by Mayo Clinic and Ragan Communications. I hope you enjoy it.
This video comes, for me, at the right time. As I head into the stresses of midterms of my last quarter of school ever, it’s a reminder of how exhilarating it felt to be up on stage, telling my story. It’s a reminder of why I continue to blog. It’s a reminder that there are some things that are more important than a week of classes (shh. don’t tell my professors). It’s a reminder, as I struggle to teach myself the statistics that I missed for one of my classes, that I traveled all the way to Rochester, Minnesota to give this speech for a reason. Sure, I hope to continue speaking, and I was able to connect with other patients and health care communicators from around the country, not to mention catch up with former coworkers and my friend who helped me with the JGL video.
But there’s a reason that’s harder to quantify. Cancer affects my everyday life in many tangible ways–doctors appointments, blood work, scans, side effects, pills, pain. It also affects my life in many intangible ways. If affects my mood, my concentration, my attention, my ability to deal with regular life stresses. One of my professors accepts doctor’s appointments as an OK reason to miss class and treatment as an OK reason to turn a paper in late–but what about the time that I need to process this? I think the emotional aspects of this disease aren’t emphasized or accepted to the extent they should be. It doesn’t take much; but I have found that I can’t just smoothly switch gears from cancer to school to cancer. I need time to reset. I reset by blogging, doing videos, making speeches, watching TV shows, doing fun things that help me forget about having cancer, and taking time to meditate and sleep and see my therapist and hang out with friends.
Going to Rochester was an extended reset. It was an amazing opportunity. It was fun. And it helped come to terms with this life sentence a little bit more.
(or here’s a link if you need that: http://youtu.be/kER0a5Z9NUU)
I would like to extend a great big thank you to Ragan and Health Care Communication News and to my friend Jessica (there’s a great photo of her on one of my slides if you make it to minute 10) for agreeing to have me speak and come out for the conference and for doing everything you’ve done to help me out with this. You’re the best!!
I occasionally feature guest posts from family and friends who feel inclined to write about cancer. My youngest sister Paige, who is currently studying abroad in Florence, Italy, wrote a guest post for my cancerversary yesterday. You may remember her from her first guest entry, posted a year ago today! She normally blogs about about her study abroad experience at Ci Vuole un Fiore (It Takes a Flower).
Yesterday, my family and I celebrated my sister’s two year cancerversary. Two years ago yesterday, my older sister was diagnosed with pancreatic neuroendocrine cancer, an extremely slow growing but incurable form of cancer. But this post is not about cancer: this post is about survival and celebrating my decision to study abroad.
Two years ago when I heard the news of my sister’s cancer, I was absolutely devastated. I got through this weird time in my life when my emotional state was all over the place by traveling home a lot and relying on my good friends. Study abroad was about the last thing on my mind. Since I entered college, I knew I wanted to go abroad, but I was unable to go junior year because I knew I wouldn’t be ready to leave my home and family for any extended period of time a year after Lindsey’s diagnosis.
The fact that I’m a relatively well-adjusted study-abroad student is a direct product of the cancer news. I can put things in perspective a lot better than most people (what’s a few messed up travel plans compared with cancer?), which has enabled me to adopt a “c’est la vie” attitude. The cancer news made me a more mature and stronger person. I like to think of the 19 years of my life before the cancer news as blissful ignorance, but the reality is cancer, in part, shaped the person I am today. That person is someone who is mature, competent, with the confidence to handle herself in a foreign country. I’d be lying if I said I wished the past two years hadn’t gone differently. The reality is I would trade no cancer for the “new Paige” in a second. I also can’t say I was happy yesterday on my sister’s cancerversary: I wish I could give back 730 days where everyday I thought about cancer hundreds, even thousands, of times. I wish I could have a carefree life again without the nagging worry I have every second of every day. But despite being unhappy yesterday, I celebrate myself for being torn apart by bad news, but gradually putting myself back together again.
One year ago, I felt merely like I was myself again, after a full year of not feeling like myself. Today, I actually felt like I have grown: into someone who is mature, and handles difficult situations with confidence, and most of all someone who has hope for the future. I guess the silver lining to bad news is how you handle it, how you change because of it.
Study abroad is the hardest and most rewarding thing I have ever done, and I think this is true for everyone. Its beyond difficult to be away from my friends and family, but the reward is everything I have recorded in my blog. The reward is how I feel when I see a beautifully preserved piece of art that is older than America, and how much I clearly love Italian culture. Today, I celebrate not letting cancer define me: It is easy enough when you get some bad news to curl up in a ball and never come out, but much harder to go on with your life and the plans you had before the news. I celebrate being able to be away from family long enough to experience Italy: a year and a half ago, it was impossible for me to imagine being away from my family for an entire quarter of school. Today, I am on the other side of the world and will be away from my family for a total of 16 weeks. I celebrate my friends (new and old) and family, without whom I would not be in Italy today. Most of all, I celebrate survival.
I am fully aware that the reference to fegato (liver) in the title of this post probably doesn’t have the same word play in Italian as it does in English… but let’s pretend that it does.
I enter my cancerversary today feeling a lot less conflicted than last year, more willing to celebrate, even. It has been quite an exciting year.
Though I have spent cumulatively many days in cold, windowless waiting rooms and exam rooms this year (and I celebrate this morning in both), I have spent very little time actually feeling sick. In fact, I have spent most of my time making lemonade out of these lemons that have been thrown at me. Or dancing, if you prefer that metaphor.
I made my latest batch of lemonade last week in Rochester, Minnesota, at the Health Care Social Media Summit put on by Mayo Clinic and my old company, Ragan Communications. I spoke about getting diagnosed, “coming out” on Facebook, this blog, and of course my video. It was only a little nerve-racking and surprisingly fun to stand up in front of over 250 people and tell my story. And the feedback was overwhelmingly positive. Don’t worry, I will post the video as soon as I have access to it.
I said this in my speech, with a lot more feeling and emphasis than I will say it here, but I realized when I was preparing that last year, almost no one knew I had cancer. This year, I “stood” in front of over 400,000 people on YouTube, thousands more on TV, the radio, and in the news, and these 250 people in Rochester last week and announced that I have cancer.
It feels absolutely amazing.
I don’t know why I needed to do all this. I am not extremely outgoing. I don’t usually like everyone to know my business. But before I told everyone, I felt like I was lying all the time. Now, I feel like myself. Just now, with cancer.
—–
This year, I would like to dedicate my cancerversary to my great aunt. Also, to my dad, who spent a lot more time feeling sick (rather, hurt) this year than I did. As much as I am thankful that i’m still around to celebrate my two-year cancerversary this year, I am more thankful that my dad is just now, six months later, feeling much better.
