I finally called my doc last week and he immediately diagnosed what is hopefully the problem and got his people to schedule an appointment to diagnose it and fix it. I was relieved–finally, a quick fix. None of my other post-surgical problems seem to have quick fixes. Only it hasn’t been so quick. His people ended up scheduling the appointment for a week and a half away. So I called back–”This problem feels–and sounds–urgent. Isn’t this urgent? How am I going to live with this for another week and a half?”

The nurse practitioner giggled at my question.

“Elevate and wait,” she said.

But that’s what I have been doing for a week and a half already. I’m really uncomfortable. Isn’t this serious?

“No,” she said. “Elevate and wait.”

So here I’ve been sitting, elevating and waiting, in basically the same position I have been sitting for the past almost-week and a half. My appointment is finally tomorrow. My mom bought me support hose which help me feel a little more comfortable and help my feet fit into my shoes (thanks, mom. happy mother’s day). I have almost made peace with watching too much T.V. because if I try to do much else for too long, I get too uncomfortable. I just read in TIME Magazine that brain function starts to decline after 27. I worry it’s happening to me faster than average.

I sometimes wonder if doctors think about what they’re saying before they say it. If they had to go through what they ask their patients to go through, would they speak about everything so blithely? My onc is an active guy–would he like to sit on his butt for three weeks with swollen, aching feet and legs, relying on his family and friends to help him out with everything? I’m not wishing ill on my doctors… I just wonder.

The doc who put in my lung tube, too, was so nonchalant about the whole thing that I was completely unprepared for the help I would need after and the care of the drain site itself. The procedure was so “not a big deal” and so “not painful” that I had to cancel all my plans for the next few weeks because I was in pain (still am a little) and not moving around so easily. The tube itself isn’t just a tube that comes out of my skin–there’s a whole contraption attached to it, and I have to wear a huge dressing over it at all times.

When I saw my new semi-permanent dressing for the first time it made me question–do docs expect that people go out and live normal lives when they’re not at the doctor? How am I supposed to wear normal clothes, shower, feel beautiful, feel comfortable when I have a dressing huge under my shirt that makes it look like I just escaped from the hospital? Did the doctor, did the nurses, did the scientists who designed this stupid tube think about what they were making?

Maybe they think, with the tube as with the fluid: that for me, this is temporary. This girl is young and all of these things are steps toward her making a full recovery. I think: I have been feeling awful for what feels like an eternity. I seem to keep getting worse. When will I feel better? When will I be self-sufficient again? Next month? Six months? Next year?

Time brings some acceptance, some change. The scar that used to cause me a lot of anguish I hardly think about anymore. The dressing is a little fun to try to creatively hide with various hang-y shirts and sweaters. The lungs are still in pain, but at least I can drain the fluid whenever I want; I get some comfort out of that. I have been sleeping somewhat better and moving around somewhat easier and taking a little less insulin.

I haven’t accepted my tree-trunk legs. In fact, they feel a little worse, a little more full of fluid, every day. But at least I have only one more day of elevating and waiting. And another thing I can say to my doctors: I lasted a whole three weeks with fluid-filled legs. I lasted months with a fluid-filled lung cavity. Whatever other painful waiting periods you throw at me–I won’t be happy, but I can probably last through those, too.

For a time it felt like there was an end in sight–a list of problems that needed to be solved and some action that needed to be taken. Things don’t ever move quite that fast. For another time it felt like my doctors were content to leave me sitting on the couch with my feet up watching T.V. for all eternity. Then, I got the email: that all my paperwork was in order and I was going to Germany for treatment. I even had an appointment: for the end of May. Now, I have flights booked.

This is real. I am getting the treatment for neuroendocrine tumors that patients and doctors talk about with awe, in the place that they talk about with awe, from the doctor they talk about with awe. When I was first diagnosed, my oncologist said, “Well, we can do surgery, then we can try all these drugs, and we can do interventional radiology, and we can think about a transplant. Maybe someday, we’ll even have to send you to Germany.” That day is soon.

So far, the generous donations I have received from my readers, from my family, friends, and friends and family of friends just slightly outweigh the amount we have had to pay just to get ourselves (me and my parents) to Germany. Since I am not using an organized donation site this time around, and in the interest of transparency, let me give you a breakdown of the donations received thus far:

$1,383.53 from my wonderful sister Sara, Pillow Engineer, and her Etsy page

$6,346.02 from my wonderful readers, family, and friends through my PayPal donation site

$7,729.55 TOTAL

That is incredible. That’s from 26 people buying 31 pillows (Sara’s been engineering her butt off!) That’s from 36 other people giving just a little–or a lot–of their hard-earned money to help me get better, so I can make hard-earned money too someday. That’s a lot of people who care.

In the interest of transparency, i’d also like to say, though we still have about $3,000 left in donations after purchasing the plane tickets, we still need to buy train tickets, pay for lodging and food while we’re there, and, of course, pay for the treatment. Insurance may help cover part of it (may being the key word), but we’re responsible for paying everything upfront. That means we’re looking at another $15,000-$20,000 to cover this trip. And I will have to go back to receive further treatments with around the same price tag in the months or year ahead. We will know more about that once we meet with the doctor in Germany.

More help is on the way. I think i’m not too premature in saying that a few of my friends and my boyfriend are planning a benefit show for me in the coming months. Another friend is thinking about putting together some fundraising dinners. Maybe i’ll win the lottery. My sister’s pillows are still on sale, and my PayPal donation site is still up and running.

In the meantime, i’ve got less than a month til we leave. I have strength to continue to regain. Walks to take. Damn fluid to somehow vanish from my lungs and from my legs. Blood sugar to control. Pills to take. Nausea to understand. Papers to organize. Appointments to make. A suitcase to pack. Probably, a lot of T.V. to watch, books to read, things to crochet, posts to write, maybe even fun to have. I still feel like i’m waiting–but there’s an end in sight.

I used to do this too, except instead of coffee I make tea. I used to really treasure my free mornings. When I was in school, I looked forward to the one or two days per week I had the luxury of waking up without an alarm, lounging in bed for a few minutes, eating a leisurely breakfast (usually Joe’s O’s with golden raisins and almond milk), lingering over a cup of one of my many favorite kinds of loose-leaf tea, reading the paper, listening to music, or just thinking.

My mornings now don’t fit into nice pop songs. Nobody writes songs about insulin, pills, and especially not about throwing up. I still get to wake up without an alarm, but more often than not the first thing I notice is not how comfortable my bed is, or how well-rested I feel, but nausea. Instead of lounging in bed for a few minutes, I do a dance with my stomach–testing to see whether it feels like actually throwing up, or if it just feels like being queasy.

Once it decides, I move on to my blood sugar. I’m officially diabetic again, for reasons known only by my pancreas, so I test my blood sugar and go about the process of giving myself two shots in my belly that is tired of getting shots. Breakfast now has to be the right balance of carbs so as not to overwhelm my sluggish pancreas. My usual breakfast is very carb-y.

Next up: pills. I don’t really take that many pills. I take a few vitamins. But I take more pills than I used to, and each one is important, so it’s seven gulps now between me and my breakfast. When my stomach is queasy it’s picky about breakfast, too, and usually it wants it now, not seven gulps from now.

Two of those gulps are for my pancreatic enzymes, which help my body digest food when my pancreas is being as lazy as it is now. Speaking of enzymes, some people do write songs about pills. My boyfriend wrote a song to get me to remember to take my pancreatic enzymes…”at mealtimes. Digest those proteins in black beans, absorb the fats in ice cream, break down carbs to sugars in your gut…” It doesn’t help me remember, but it’s nice having my own morning song, even if it is about pancreatic enzymes.

My roommate says I get to be more in tune and involved with my body’s processes than most people. I help my cells get energy in the form of sugars with insulin. I can tell if I have too many sugars or too few running around my bloodstream. I help my body digest proteins, fats, and carbs–and I’ve been gaining a little weight thanks to all the digesting and absorbing I’ve been doing. I help it drain the fluid that it makes but can’t handle. OK, body, i’m helping you out–now help me out. Pancreas, stop being lazy. Fluid, stop collecting. Cancer, stop growing. Stomach, hold yourself together. I hate waking up nauseated.

By this point, if my stomach is still feeling queasy, it’s really wanting breakfast. And i’m really wanting to finally just put the kettle on and say hey to the sun. And my newspaper.

So I enjoy the small things, like eating ice cream on the beach with my boyfriend. Or walking to my current favorite farmer’s market. And I try to hold onto the good news I get tightly, because without it, I feel pretty pitiful.

Leading up to yesterday’s appointment with my oncologist I ran through every possible bad scenario in my head. If my tumors could be upgraded from a G-2 to a G-3, what else incomprehensible could happen? Why shouldn’t my octreotide scan, which determines my eligibility for the PRRT in Europe, also be negative? Why shouldn’t this fluid that has continued to impede my recovery also contain cancer cells trying to metastasize to my lungs? My mom brought an overnight bag up to the appointment just in case these fears turned out to be true.

These fears turned out to be only fears. My tumors may be on the aggressive side, but they appear to still have a weakness called octreotide. I am going to Europe for treatment. Bad Berka, Germany to be specific. And the fluid, though annoying, is just fluid.

I’ll take it.

I’m going to stop short of predicting a miraculous remission. But starting from a place of, “I’m not going to live through this,” a ray of sunlight is nice for a change. Even if that ray is in the old East Germany, a place perhaps not often associated with sunlight. The sunlight doesn’t stop this fluid from being uncomfortable and counter-productive and another thing to deal with before we’re allowed to get this show on the road–but it’s a problem for tomorrow, or the next day, or next week. Right now I have pretzels and flights to think about, doctors and assistants to email, and the promise of a new treatment in Germany to enjoy. And a walk to the farmer’s market.

I would like to take a moment to say thank you to everyone who has commented and emailed words of encouragement–these have been a hard few months and it helps to hear the support. I would also like to say my humblest thank you to everyone who has donated to my “sending me to Germany fund” so far. My sister’s pillow sales have exploded–she’s up to her knees in fleece, felt, hot glue, and pillow stuffing–and she still has more for sale. We are so lucky to know so many generous people. So far we’ve brought in almost enough for two round-trip flights! That’s more than I was expecting and every bit helps. The only thing decidedly NOT sun-filled about this treatment is its price tag.

Some people with G-1 can live for decades with no growth on no drugs at all, or just a monthly injection. G-3 is said to be almost a different disease altogether, often treated with an intense regimen of chemotherapy that makes one lose their hair. When I was diagnosed I was on the upper end of G-2–my tumors grow fairly quickly compared to other medium-grade tumors, but they are well-differentiated and they respond to the slightly less-toxic therapies.

Last week I had my first appointment with my oncologist since my surgery. After a little bit of warm up about how good I look and how much oxygen i’m now getting without 1.4 extra liters of fluid around my lung, he blurts out:

“Your tumors are now for the first time being called G-3. Did you know that?”

My heart stopped.

Blood started pumping in my ears.

I have only cried once before during a doctor’s appointment and it wasn’t when I was first diagnosed. Tears suddenly sprang to my eyes.

A thought that has never before seriously crossed my mind came surging up to the forefront: “I’m not going to live through this.” Then: “I’m scared.”

It’s OK to be scared. But I am a liver. Where is my silver lining? It took me a few days to find it.

Three is just a number. Two is just a number. And like my old oncologist used to say, tumors don’t read the textbooks. So the pathologists start calling it a G-3–so what? In my case the recommended treatment is still the same. No matter what it’s called, the tumors will respond to the treatment in the way that they biologically respond to the treatment.

I had a biopsy in November 2010 and a surgery in December 2010: these were the tumor samples used to grade my tumors for two years. No one has had the opportunity to test any new samples since then, so it could be that my tumors have been G-3s for a year, or even two years. No one knows when the tumors cells mutated and started growing faster. Still, my cancer hasn’t spread. And clearly i’m still alive. Working through a few side effects of surgery still, but basically feeling good.

I wrote something in September 2011 that I have been thinking about a lot lately: All of these scans and all of this pathology, they’re just filling us in on what has already happened. They’re week-old or year-old newspapers that we’re suddenly discovering. What is really happening is the doctors and I are running after the cancer as fast as we can but we can’t quite get there. It’s always one step ahead. It’s not maliciously one step ahead, it just is. It is growing and dividing and mutating in real time–doctors find out after the fact what it has done. I take chemotherapy and take chemotherapy until I get a scan that shows growth. I only get a scan once every two or three months–when in that time did the chemotherapy stop working and the tumors start growing? When I “got” cancer on October 25, 2010, I already had it. For all I know, it could have been growing for 10 years before I started exhibiting the more unpleasant symptoms and it finally got found. 10 years!

During the appointment, the doctor rushed to try to sooth the news: “The NET grading system is still fairly new and it’s possible they will change it so there are four grades instead of three. You would have a G-3 out of four grades, with G-4 being almost a different disease, and definitely not what you have. What you have, with the cell-division rates that you have, would be like a medium-high grade.”

I’m still scared.

What do I do with this fear? I try to remember to focus on the things that really matter to me. If my time is short, I try to prioritize doing the things I really want to do in my life. But this is hard. A lot of the things I really want to do I can’t accomplish right this second. I’m only 27. I can’t get married and settle down and get a dog and have kids and become an aunt and become successful in my career and have grandkids and grandnieces and nephews and retire all at once right now. I can start writing a book, but it’s not going to get published in a week.

If I can’t do all these things right now, at least I can just live right now.

And G-1, G- 2, G-3…they’re just a numbers.

I met her right after she was first diagnosed. She was tall and beautiful and fashionable–she had yet to start chemo, but she had already shaved her head. She seemed to me calm and composed, perhaps a little apprehensive about the long treatment path ahead, but ready for whatever cancer might throw at her. She wasn’t stuck on “Why did this happen to me” or “I wish things were different.” It was fight time. And she fought for over a year. It didn’t matter that her diagnosis was tricky. She was ready, she was strong, and she was positive until the end.

Maybe this sounds a little egocentric, but a friend who knew her echoed the same feeling today–young adults we know aren’t supposed to die from cancer. When you get diagnosed with cancer as a young adult, it’s hard not to meet and remember others dealing with their own diagnosis. We’re the youngest ones in the waiting rooms, in the infusion centers, and at the support groups. We have our own lives, but we stick together because even though our diagnosis are different, we’re dealing with many of the same issues.

I feel like I have a little community of fellow young adults who are always in the back of my mind–whether they’re current patients, survivors, or livers. Among us, there are amazing stories and there are sad stories, but I always think of my little community as the one that bucks the odds. We laugh and we cry and we complain about the minutia of cancer, but I think we sometimes forget that this disease is serious business. You’re not supposed to die from cancer at any age, but especially not when you’ve just begun to start your adult life. Especially not at 31.

So today, and always, I mourn the death of a member of my little community of fellow young adults with cancer. Like those who came before her. Another blogger said it best: you’re free now.

The stuffed liver arrived a week later. I hug it a lot. Sometimes, I sleep with it at my bedside. My liver and pancreas both. I don’t know–maybe it helps. In any case, cuddles win because i’ve never loved the “battle” and “war” metaphors that a lot of people use to get through cancer treatment. My cancer is a hell of a long battle–so I prefer to call it a marathon. Or a triathlon. Something that is more endurance-based than a battle.

I Heart Guts made the original stuffed organs (the ones that appear in my banner) that i’ve been hugging all these years. Now, I have some of my own. My crafty younger sister, who already has an Etsy shop where she sells beautiful handmade pillows, started making a few “i am a liver”-themed pillows. She even has some that are shaped like livers, with spots for tumors (hey–we’re being realistic here). Coming soon are zebra-striped livers (super cute, the “girl” version has a little red bow), priced the lowest, to celebrate neuroendocrine cancer’s symbol.

My sister has been my faithful, never-complaining, Halloween-pajama-pants-enabling nurse through my seven weeks of recovery and here she’s stepping up again. Not only do her pillows remind me that i AM a liver, even when i’m feeling crappy, but she is donating all of her profits to my medical care. All of the generous donations I received last year have helped a lot with my medications, doctors visits, and now surgery, but there is likely a trip to Europe for treatment in my future. And for that, I can use every dime I can find.

If you need a reminder every now and then that you are livers too, or if you’d just like to have a soft, happy liver pillow to cuddle with, this is the “i am a liver” merch you’ve been waiting for. Thank you. While you are cuddling, I promise I will write from Europe when I go. My Donate page has been updated with the limited-time, while-supplies-last pillow promotion, along with the usual link to PayPal. Also, a picture of me looking skeletal post-surgery, with some of the pillows. I lost all my water weight and then some. Working on that.

Get your i am a liver pillows here.

Fighting cancer with cuddles. Handmade pillows by my sister, Sara.

Also, somewhat appropriately, this is my 100th post.

When I was young, a visit to the doctor could fix my ear infection, eye infection, or rash. Oftentimes I went to the doctor for no reason at all–just to make sure I was healthy. The doctor was a miracle worker. As I got older my problems became more obtuse. They often couldn’t be fixed with antibiotics, eye drops, or creams. More than that, I had to pay copays and handle billing on my own. I started to see doctors not much older than myself. My friends became doctors. Doctors became just people.

Smart, well-educated people. Good problem-solver people. Hardworking people. But: people. My people have treated me well in the two years, five months since I was diagnosed with cancer. I’m still alive, for one. I don’t look sick. And when i’m not recovering from surgery, I feel pretty well. Still, i’ve seen more than i’d like to have seen of the side of doctors that don’t know everything. That can’t fix every problem. That can’t get rid of my cancer. I don’t blame them for this–any more than I blame my parents for not being able to “solve” my cancer or Santa Claus for not being able to give me the gift of health at Christmas. Still, I wish things were a little more clear.

I am now six and a half weeks out of surgery. Four weeks ago, I went to the emergency room with a new pain and my family and I spent over 12 hours there while the ER doctor and my surgeon tried to figure out what was wrong. The scans showed I had excess fluid around my right lung. The ER doc brought in a pulm0nologist to look at my x-rays while my surgeon, on the phone, insisted that the fluid was a normal effect of surgery and that it would go away on its own. He thought a laxative would take care of it. We decided to trust the surgeon and not do anything about the fluid. I threw up most of the laxative and I went home tired, grumpy, and still in pain. My new pain gradually decreased over the next few days until it was gone. Was there a point to going to the emergency room? Did the doctors really do anything except make me more distressed? I don’t know. At least I got good pain meds, and for a second when I thought they found the source of the pain in the fluid around my lungs, a little peace of mind.

Four weeks later i’m feeling much better than I was, recently off narcotic pain meds, getting around pretty well, but still not really comfortable. And still hating sleep. My newest scan showed the fluid around my lungs is still there. Now, quite willingly, they’re taking care of it. This makes me frustrated, knowing I could have been breathing easier and walking easier and feeling more comfortable four weeks ago. If only the doctors had known.

All of these thoughts as I head into my very important, all-telling, post-surgery oncologist appointment next week. The one where maybe I will find out how successful the surgery was in terms of my imaging. The one where maybe I will find out what I face next. Oftentimes these “big” appointments are less clarifying than i’d like them to be. I just wish I was gong in with a little bit more faith.

I can’t stay shut in the house forever, though, frowning and not talking to anyone. For one thing, walking is usually more comfortable than sitting, and anything is more comfortable than sleeping. For another, i’m living with my family–my sister is acting as my faithful around-the-clock nurse, and my parents help out in any way they can. I can ignore as many phone calls and emails and text messages as I want–what do I have to say to anyone, anyway? Everyone is going about their life while mine is on hold. The only thing that changes with me is the minutia of day-to-day recovery. But I can’t ignore my family. I can’t shut everything out. And it doesn’t actually help, anyway.

As much as I don’t want to think about it, as much as I want to shut myself in my room and not come out ’til I can walk a mile without feeling like I’m going to collapse and sleep through the night, what helps is going out into the real world. What helps is interacting with my neighbors, my sisters, my parents, and my boyfriend. My body may be uncomfortable and foreign to me, but in the real world, no one really cares.

My first day at home after I got out of the hospital I was wearing my largest pajama bottoms (to accommodate my extra pounds), which happen to be fuzzy black pants with white polka dots, and running shoes (because none of my other shoes fit me), and a jacket. I asked my sister if it was OK for me to go outside like that for our morning walk and she said, “It’s encouraged.” Last weekend, after a very long trip to the emergency room (more about that later), she similarly encouraged me, though slightly more disapprovingly, to go outside for a walk in my Halloween pajama bottoms. As you might imagine, they are not currently in season, nor are they attractive. On both occasions we successfully made a few loops around the neighborhood without anyone calling the police.

I think these moments when I can get outside and maybe even forget for a second that i’m sick help even more than all the encouragement my family and my friends can muster. My boyfriend came to visit this past weekend and he kept saying, “Look at you! You are doing so great. A few weeks ago you could barely keep your eyes open and you couldn’t lift your head off the pillow. Now you’re walking around and eating well and doing almost everything on your own.” Yes. All of these things are true. But how much longer til I can sleep comfortably? How much longer til I can go out somewhere and not need to sit on the couch for the rest of the day to recover? It’s hard for me to embrace how much progress i’ve made when I have so much progress left to make. As i’m tapering off on my pain medication and the haze it puts me in i’m becoming more aware of how far I have to go until i’m back to where I was before the surgery–if I ever get there. I will get there–eventually.

I have since upgraded my wardrobe to a slightly more socially acceptable sweatpants and baggy T-shirts, and I have upgraded my outings to the beach, to longer “nature walks” around the neighborhood, and thrift stores, and supermarkets, and coffee shops, and restaurants. I get extraordinarily tired, but at least I get out of the house. And sometimes, I can forget how uncomfortable I am, and I even catch myself smiling. Like this weekend, sitting on the beach, holding an ice cream cone in one hand and my boyfriend’s hand in my other. It’s not really my style to frown all the time.

Maybe this is natural considering the post-surgery discomfort I am now experiencing. Well, more than discomfort–I would call it shock–to every system in my body. I remember feeling crappy and being discouraged last time, but I never remember asking myself whether I had made the right decision. Still, I hurt. My scar is raw-feeling and looks like something out of a horror movie. The hole where my drain used to be is dripping. I can’t move like I could 11 days ago. Walking is laborious. I get winded easily. Everything is swollen. Sitting is uncomfortable. Sleeping is uncomfortable. Getting up is hard. My brain is cloudy from the pain meds (apologies if I don’t make sense). My body feels exhausted.

My family says yes, I made the right decision. They saw the surgeon’s iPhone pictures of all the tumors he managed to take out. All I saw was an oxygen mask and a nose tube and a million wires and tubes connected to me the first few days after my surgery. All I felt was shock and pain.

It wasn’t an easy surgery. I’m young and otherwise healthy but my tumors apparently tried to rebel against the attack, making the whole ordeal very difficult on my body. They gave me more units of blood than I thought was possible to give. I spent three days in the ICU. I gained 20 pounds in fluid and all my limbs, not to mention everything else about me, looks like it belongs to someone twice my size. My surgeon had to use staples to close my incision in an effort to end the surgery quickly and stabilize my condition. I had three IVs in my arms, one in my neck, and another one in my wrist. I don’t really want to know what else went on in the OR.

So you can see. The first things I remember croaking post-surgery, beyond “yes” I can hear you and “i’m hot” because I was running a high temperature and “my mouth is dry,” was: “Was this a good idea?” Quickly followed by, “I’m never having surgery again.”

I may never know whether it was a good idea. I may be more thankful in a month or so after I have another scan. I’m at least thankful that I made it through and that it wasn’t worse, and that the surgeon actually did take out quite a few tumors by the sound of it. That must have some benefit. I’m thankful for the amazing support I have from family and friends, without which I know this would be much, much harder. I know my discomfort–the shock–is temporary. I just have to get through one day at a time. Today I took two long walks and napped in a real bed. Maybe tomorrow i’ll take longer walks, dress in something other than my baggiest, most horrible pajamas, and take less pain meds.

Maybe there’s no use in dwelling on my three terrible days in the ICU. Or on what happened and could have happened while I was on the operating table. I’m alive. I’m 25 tumors lighter. Everything seems to work the way it is supposed to. The crisis, I think, has passed for now.