I’ve been trying to puzzle out a rhyme and reason to fatigue.

I’ve been feeling “fatigued” since my surgery in February. It’s different from being sleepy or simply “tired.” It’s more like an exhaustion that has rooted itself deep in my body and no matter how much I sleep or sit or rest or even move around, it stays there. A lack of muscle-energy inertia. A tired-ness in my knees, ankles, feet, and hips. A slouch in my back. In the morning I feel it less. In the afternoon I feel it more. But not always. This afternoon, because I showered, then had lunch with a friend, then cooked dinner, then went to physical therapy (and worked hard at it), and then finished cooking dinner (and now, for some reason, I am writing this post), I can barely get my body to move. Most of the time my mind can will my body to move. I used to be a long-distance swimmer; I guess i’m used to tests of endurance. But no amount of Vitamin B-12, Vitamin D, electrolytes, protein, hydration, rest, or even pain medication seems to make much of a difference. Time between treatments, time since my surgery, is making it lessen perhaps; but I still feel it lurking all the time.

I once read a blog post comparing fatigue to “using up all of one’s ‘spoons’ for the day.” Like you start the day with a certain number of spoons, or energy bars like a video-game character, and you have to portion them out very carefully among everything you plan to do in a day or else you’ll use them all up. Today I used up all my spoons. I’m not sure if this is a bad thing or not. Presumably i’m fatigued because my body is busy healing me, or growing tumors, or killing tumors (hopefully the latter) or something. If I use up all my energy in a day does that mean my body will be too tired to do the other important things that it does? Or does it just mean that i’m tired for the rest of the night and that i’ll sleep well tonight?

My physical therapist says exercise has shown to help with fatigue. That sounds counter-intuitive. But I guess i’m getting the blood flowing and reminding my muscles to work. Today, when I told her I was tired, she said “Good!” Then she said that the more I push it, the more i’ll set the bar on my energy level higher, and eventually, the more energy i’ll have. I hope that’s true. I have been resting more than pushing myself the past few months but this week, with my nurse being gone, i’m making an effort to make plans for myself. I’m pushing myself more than resting. With the help of physical therapy, i’m starting to feel a little stronger, a little more confident in my body for the first time all year.

Despite my current fatigue–dare I say it? I feel good.

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my cancer-butt-kicking-staying-happy team

My nurse/sister/friend has been my constant companion since February of this year. By constant, I mean she’s been with me almost every second since I had my last surgery. Except the time that she was working and hanging out with friends and sleeping. But even then, she always slept with one ear open, in case I was throwing up in the middle of the night or in pain.

Beyond that, she was the first and maybe only person person to understand (if it can be understood… the doctors are still mystified) and help me with my weird nausea symptoms that started three years ago. She would buy me Wetzel’s Pretzels when we went out shopping and it was the only thing I felt like I could eat. She would sit patiently outside the REI bathroom while I felt nauseous inside. And she didn’t get embarrassed when I finally threw up on a finely manicured Brentwood front lawn. Really, she’s been my other half for about three years now.

On Saturday morning, she began her new life as a grad student living in a different city. The furthest apart we have been since I moved back from Chicago. She is not studying nursing, mind you, but engineering. I’m enormously proud that she has decided to make this leap and excited for her to start this new phase in her life. I am excited for her to have a life and meet boys and make friends and go out and learn and have fun. But she has done so much for me over the years, and in particular these last few months, that since she left i’ve been reeling from how much I miss her company, her good sense, her skill with my TPN, and the fact that she has cooked my meals and cleaned them up and kept track of my appointments and prescriptions and driven me around and tucked me in and ran upstairs to retreive some forgotten item for me for months now. Sara did a lot for me. And that’s not even mentioning all of the donation pillows she has made. It’s exhausting to do all of these things myself. Of course I have other help. My parents help me when they’re not at work and they call me from work to make sure i’m doing OK during the day. They nursed me back to health after my first surgery and they are spectacular caregivers in Germany. My boyfriend and a few friends are also a big support and help to me and that will come in handy when I move back to LA.

My parents have always said that more than a nurse I need someone around with me all the time to keep me happy—especially if I don’t have any activities planned. I’ve been trying to keep myself busy, or as busy as I can be when I don’t have unlimited energy. I do enjoy regaining a little bit of my independence. (My favorite saying used to be: “I’m 27 years old. I can do this all by myself.”) I feel more “normal” now. But I think I still prefer being part of the cancer-butt-kicking-staying-happy-smiling-“livering”-star-trek-enterprise-watching team we had. We still have it. But it’s just not always next to me reminding me.

Nurse Sara says she’s writing a post about her side of the story. I hope she finishes it one of these days so I can post it. Engineers need to know how to write too!


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on and on

I don’t remember writing very much about the fear that gripped me the last time I was in Germany. I wrote of course about my fear of going. But i’m talking about the fear that I faced while I was there. It wasn’t that the news that we received there was so terrifying. But, looking back, it did terrify me to learn how bad everything suddenly was. That there were “innumerable” tumors in my liver, that there were tumors outside the liver that no other scans had picked up. The treatment itself, of course, also scared me, as well as being on my own in a ward where no one spoke my language. I spent many sleepless nights staring at the clock on my wall in terror.

Fear is a hard thing to admit when you have cancer; especially when you’ve been living bravely with cancer for over two-and-a-half years. Especially when you’re feeling not terrible, just bad, and when you have a lot of people who want you to live, and when a lot of people live a lot of years with what you have (albeit with slightly different diseases). But I was scared. I still am sometimes.

Fear wasn’t the case the second time around. The prevailing emotion, I think, was frustration. Powerlessness. At having to go all the way to Germany to have this medical treatment, the language barrier that was such a barrier, being in the hospital. Mostly at finding myself over and over this year, at age 27, with a master’s degree and an amazing boyfriend, yet not at all in the place that I want to be in life—or ever thought I would be in life. And no end to the discrepancies in sight.

I am not completely thankless. The cancer did respond to the first treatment. My liver showed a small reduction in tumor activity. Which is good news. But despite the improvement in my liver, there were another few small legions growing outside my liver. My cancer isn’t quite ready to put down its sword.

This frustration that i’m talking about, though: after we talked to the doctor my parents and I realized for probably the 50th time that this isn’t going away so easily. None of our plans for the future are really accurate and we are going to have to make things up as we go along. For example, I keep thinking about this time in the not-so-distant future that I might feel 100 percent again. Naively I thought that time would be a few weeks from now… but that time might be pretty far off, especially if I keep going and having my butt kicked in Germany every few months.

The only thing to do is to try to live as normal life as possible despite not feeling 100 percent. I can’t hide away at my parents’ house forever. I need to rest a little and then get back on my feet, even if I don’t feel like it, and try to live my life. I don’t quite know what that life will look like, but I need to find it. I keep thinking about this like my recovery period after my last surgery…but whereas my recovery period had an end last time, this time it just keeps going on and on.

I return to Germany in December.

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just say no

It seemed like the minute I stepped on the plane home on Sunday (Frankfurt to LAX, flight time 11 hours) was the minute that my tumors registered they were being attacked by the treatment I had six days prior.

I was in pain. I ate-I threw up-I felt nauseous-I didn’t eat-I threw up anyway. The flight attendants kept asking if there was anything they could do (we have motion-sickness medication), while gingerly trying to think of excuses not to have to handle my vomit bags. I had my entire anti-nausea arsenal at the ready, but those drugs only work if they want to work. I slept as much as I could. It was miserable.

The only redeeming factor of throwing up the whole ride home was when were finally on solid ground and homeland security tried to take me into a little interrogation room because I was setting off every radiation monitor on the premisses, the officer looked warily at the vomit bag in my hand and told me to sit back down.

Over the past three days the nausea hasn’t gotten much better, except for a brief infusion of Zofran on Monday that was supposed to “break the cycle.” I ate dinner that night. I haven’t really eaten anything since. Thank goodness for TPN. Thank goodness for sleep, the only time when I don’t throw up.

Desperate, we saw my backup oncologist yesterday who tried to get me a standing appointment at the infusion center for fluids and more IV Zofran until this passes. He wasn’t successful yesterday so he called over to the ER and told them to fit me in for a quick hour-and-a-half round of fluids, anti-nausea meds, and labs. Naively we believed him.

I answered all the triage questions with little detail, saying repeatedly, “My doctor just called over here. It should say what he wants in the computer.” I was sent out into the waiting room to wait for a bed.

I got a bed after 30 minutes or so. I was given a hospital gown “for easy access to my PICC line,” and left with the instructions to get into it and wait for the ER doctor. I tried to argue about the gown. “You can access my PICC line from under my shirt sleeve if I take off my jacket–see?” The nurse grumbled. “OK so we’ll just get some labs, wait for them to come back, and then see what we’re doing.”

It sounded pretty simple, but the truth dawned on my whole family at the same time. You can’t just go into the ER with an order from your doctor and get IV fluids and anti-nausea meds. If your labs say you need potassium, you get potassium. If your labs say you need iron, you get iron. My labs are far from perfect. Also, no matter if you just think this nausea is a side effect of the treatment you just had in Germany. No matter if you have spent the last 2.5 years trying to get some doctor to “fix” the nausea by finding out what’s causing it to no avail. This ER doctor might think he can be the one to figure it out with a CT or a brain MRI or a freaking endoscopy (which I have spent 2.5 years successfully avoiding).

I already had an appointment at the infusion center the next day, and more than anything I wanted to sit on my couch at home with my pillows and stuffed animals and heating pads. Drinking tea to turn off the nausea switch in my throat. Dozing and watching TV shows. More than anything, I did not want to spent the next 5 hours at the ER pulling around an IV pole every time I needed to go to the bathroom. I could endure another night of not eating, feeling nauseous, and vomiting, and I would go to the infusion center the next day where my stay would truly be only one and a half hours.

I said, “No, thank you.” Put my jacket back on. Walked out.

It was the second time in a week I have said no to a doctor, and maybe the second time ever. I put my foot down once in Germany too. Every other time I have been to the ER (or to the hospital for that matter), I have been a very dutiful patient. I get annoyed at how long everything takes, but I do it. It’s the price you pay to feel better, right?

I have been sick for almost three years now. I am tired of being sick. Tired of everything medical. Tired of waiting long hours in healing places to not really feel that much better. I was just sick in Germany for 10 days. I like being at home in the States. No matter how bad I feel, I feel slightly better at home. So I exercised my rights as an adult, ignored the nurse reiterating how sick I am, and said no.

Interestingly enough, I actually felt slightly better today. I skipped my infusion center appointment too. I took a long nap. I ate more for lunch than i’ve eaten in the past week–and I enjoyed it. My nausea switch was turned off almost all day. Maybe my nausea just needed a firm “NO.” Maybe my pain will respond to the same.

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turning on my brain–hello again!

I think I needed a break.

A break from thinking, a break from writing, a break from being so honest and candid. A break from wondering if I was whining too much about feeling poorly and writing too many depressing posts. Perhaps what I most needed a break from was having cancer and feeling as sick as I do now. I didn’t get that, of course.

But I did have a few weeks, or maybe even a month to allow my brain to shut off. Watch too much T.V. and read too many books too fast. Play stupid games. Enjoy my free days and the sunshine with my sister and my boyfriend and friends here and there. Distract myself from the side effects that were coursing through my body at first, from the treatment, and later from the everyday pain and discomfort and muscle weakness and fatigue. I couldn’t always distract myself. But for that I have a family and friends to talk to, and a medicine chest full of aids. My (nurse) sister’s favorite past-time is suggesting I take a pain pill or an anti-nausea pill or an Ativan or use a heat pack or have a protein-laced milkshake to get myself through whatever I was thinking or feeling at that particular moment.

Things have gotten a lot better, little by little, day by day. Thanks to the TPN I am now ten pounds heavier, well hydrated, full of vitamins and electrolytes and proteins. Thanks to my family’s diligent and loving care I take lots of walks, my lung cavity stays well drained, my legs stay un-swollen, and I am coerced into eating and drinking more calories and protein than I would get otherwise. I still feel nauseated, inexplicably, many days, and I vomit, inexplicably, more than I care to. But I am now hopefully physically strong enough and sufficiently relaxed and ready to confront my next trip to Germany.

So i’m re-booting my brain and blogging for the occasion. I leave Wednesday. I apologize if you were worried. I don’t plan to take another leave of absence from writing… in fact, if you’re lucky, i’m hoping to write a post or two while i’m there. We’ll see. For now, i’m trying not to dread the trip completely. I am a lot better off physically than I was last time. We don’t have as many unknowns about the logistics of the trip to deal with. I even get to see a little bit of the country before I’m scheduled to arrive at the hospital.

Still, I am curious but not eager to learn how effective the first treatment was–and what my chances are looking like for the next treatments. I am not looking forward to experiencing the next side effects my tumors have in store for me; I do not wish to feel worse again before I feel better. But I hope I have been through the worst of things and that this second trip and second treatment is just another step on what is turning out to be a very long road to recovery and to getting my life back on track. I miss it.

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i am a liver live!

i am a liver benefit flyer

If you or someone you know lives in L.A., send ’em on down next Tuesday to see a great show. Several of my friends have been hard at work on this for months now and the lineup they put together is awesome. They are awesome. If you haven’t heard the headliner, Jenny O., she just released an amazing debut album and has been touring nonstop since… but somehow found time to come out to help me. I’m also thrilled and honored to have Karmina open. And you’re guaranteed to enjoy the bomb ’90s covers from (my boyfriend’s group) Band Meets World. You might even see me up on stage. Also featured at the show (for sale): i am a liver bracelets, limited-time only Band Meets World t-shirts, and a whole basket load of plushes and other liver-themed crafts from The Pillow Engineer. All proceeds from the event go to my future trips to Germany for treatment. Check out the details and buy tickets here: http://iamaliverconcert.wordpress.com/

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on being a burden

For as long as I can remember, my family has had the same nighttime routine. It was slightly different when my sisters and I were kids and we all lived at home, but the basic idea was the same. We eat dinner together as a family. We clean up (whoever didn’t cook dinner), and then we all troupe into the family room to watch TV. Sometimes, on the weekends, one of my sisters will make cookies. Sometimes, during the summer, we’ll take an after-dinner walk. Sometimes, if everyone is feeling particularly social, we’ll play a game. Mostly, we watch TV. Or, as the years have gone on, we multi-task with smart phones, iPads, Kindles, laptops, or crafts.

Recently, there has been a new addition to the routine. Sometime between TV show #1 and TV show #2, there’s the family activity of connecting Lindsey to her TPN bag. When I returned from Germany with my legs still swollen like tree trunks, barely able to walk, the doctors finally decided they needed to do something that would work about the 15 pounds of fluid that had been collecting in my body for months. Even the “quick fix” that was supposed to fix it didn’t make a difference.

So I was sent to get a PICC line (peripherally inserted central catheter–i’m looking more and more like a cancer patient every day). And I was sent an I.V. pole. And a bunch of boxes of gloves and alcohol pads and syringes. And a nurse to teach us how to use everything. And refrigerated I.V. bags full of a thick, white, slightly sweet-smelling liquid: TPN, or, “total parenteral nutrition.” Basically, this fluid infuses me over night with all the calories and proteins and other nutrients my body needs to function. Whatever else I can manage to eat during the day is “icing on the cake.” The protein in this bag is supposed to help my cells deal with the excess fluid in my body (which is there because there’s an imbalance of pressure in the veins in my liver due to all the tumors pressing on them). And the calories, eventually, will help me start gaining weight. Rather than legs like tree-trunks, now I have legs like saplings.

But back to the routine. It’s a fairly complicated procedure to connect the TPN, and it’s essential that everything be kept as clean as possible so as not to give me an infection. I can’t connect myself because I can’t reach the PICC on my arm, so it’s up to my family to connect me. In fact, I have moved home for the time being until I don’t need as much help anymore–more on that later. At the beginning I was stuck on “being a burden” to my family because of all the help I have been needing lately and all the time that the TPN takes (and the dedication–my sister is on permanent nighttime duty if it gets kinked or air in the line or the machine randomly starts making noise while i’m sleeping). But the more nights this has been going on, at the risk of putting words in my family’s mouth, I suspect they actually enjoy the TPN.

The other night I awoke from a nighttime TV nap to discover my family, gloved up and all wearing face masks, standing around the medical-supply table arguing animatedly about one of the steps in the TPN-insertion process. While they were arguing and I was fighting sleep, I remembered something my therapist has been telling me for years about being a burden on the people closest to me. People who care about me want to help, because they feel bad that I feel bad, but there’s not much they can do. My mother is constantly telling me, “I wish I had this instead of you.” My parents went to Germany with me to provide moral support, even though I was stuck up in the no-visitors-allowed ward most of the time we were there, and they were stuck in the hospital’s lobby. I felt bad I couldn’t see them, but they kept repeating, “We’re here to support you.”

The TPN is something tangible my parents and my sister can all do everyday to play an active roll in my recovery process. And it is already making me feel better after only two weeks. I can only hope that in two more weeks I feel even better. And two weeks after that? Maybe i’ll even have put on a few pounds. And more than that, it’s a departure from the no-interaction lifestyle that TVs and smart phones and iPads and Kindles promote nowadays. It forces everyone to talk to each other. If I could only stay awake for it.

I feel I should acknowledge here how amazing my support network is. Some people get cancer and lose their family and friends who can’t deal with it. My family is amazing. I couldn’t get through this without them.

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hoffen (to hope)

The lobby of the Zentralklinik.

The lobby of the Zentralklinik.

When my parents and I stepped foot inside the Zentralklinik in Bad Berka, Germany last week, my first thought was: this looks like a place where people go to get cured. One of those miraculous places in documentaries where people go with impossible medical conditions and they come out without them.

We were fresh from a quiet, wet morning in Weimar (where apparently nothing is open on Sundays), a fast taxi tide in a fast German car through the misty, green Germany countryside. Coming from fire-prone, dry, brown Southern California, it seemed like a dream. We arrived at these beautiful old white buildings nestled along the edge of a lush forest in this charming German town and “wow” was all I could think. “Despite the stress of getting here, I am really glad i’m here.” I think my parents were thinking the same thing.

Of course, the Zentralklinik is just a normal hospital to Germans, where they get routine medical treatments. But to me, there was nothing normal or routine about this place or the medical treatment I was seeking there—and traveling about 5,000 miles to do it. They don’t do this at home. This place is special.

As we went through the check-in process and it came time for my parents to leave me at the frosted door of the ward where I could spend the next week, I must admit I was terrified. To my right side were my parents who had already successfully navigated my swollen ankles through 13 hours of travel and one long night. To my left was a nurse who was solemnly shaking her head, no, my parents weren’t welcome there. She didn’t appear to speak any English. She had a disposable cup in one hand she was about to ask me to pee into.

But once I got inside, not without a few tears, I met a nice nurse who happened to be just my age and speak better English. I got more relaxed. My room didn’t feel like an American hospital room at all. It had bright yellow walls, a yellow striped comforter, a puffy pillow, a closet for my clothes, a breakfast nook. And best of all, two big bright windows with a view of a flowered rooftop garden, and the green green green forest that borders the town and almost swallows up the hospital. Of course, to keep up that green it rained every day we were there. But it was also quiet. So quiet. No machines beeping, no people moaning or even talking, no loud TVs in the next room or jubilant visitors. I wondered if I was the only patient. Middle-of-the-forest, middle-of-nowhere-Germany, healing silence.

By the time I met my parents for dinner that night they commented that I looked noticeably more relaxed. I was. I’d like to say I stayed that way the whole week; but the jet lag, the language differences, the countless tests and procedures, the fasting, the discomfort for a lot of the week) the meeting with the doctor, not to mention the traveling… it all took a lot out of me. I spent a lot of time decidedly not relaxed, emotional, in pain, feeling broken, and definitely not feeling particularly hopeful. You can look forward to reading those posts–but for now, i’m focusing on positive first impressions.

I’m home now. I’m trying to continue to be relaxed. I can’t say i’m succeeding. I have (temporarily) lost a lot of my energy. I am (temporarily, hopefully) extremely uncomfortable. I (temporarily, hopefully) need a lot of help in everyday living. In short, I am suddenly now and for the past few months getting slammed with all the hard stuff of cancer that I was ignorant to for the past two years and eight months.

But I made it home from Germany, at least, with a little more hope than I left with. I got the treatment that I went to Germany to get–the seemingly miracle treatment. The radioactive isotopes are working their magic within me as we speak. I know that i’m not healed now, after just one treatment. But one day, maybe.

I’m due back in August.

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ich bin eine lebe

Ich bin eine leber is, of course, “i am a liver” in German. It’s probably not the most practical of German phrases to learn before my big trip to Germany; but it’s comforting and I could use a little comfort right now. I leave today.

Many many many months ago when I imagined that day far, far in the future that I would (probably) have to travel overseas to seek the famed PRRT treatment for my cancer, I imagined that it would be (secretly) exciting to go to Europe for treatment. That I would get treatment one day and be out eating pretzels and drinking beer the next. I imagined that I would beg my parents to take me to Paris or Prague or Berlin or Amsterdam beforehand, you know, while we were in the area. I imagined I would be wearing heels–isn’t that what fabulous European women wear?

Now that the day is today, I am not not excited. I had imagined I would be feeling much better before I left. I have been laying low in my living room for weeks and now i’m supposed to be ready to hop on a plane to fly halfway across the world? I’m not sure i’m up for this; but I have to be, because my tumors are growing and doing crazy things (like causing my legs to swell up) and I need to do something to take care of them. Contrary to my imagination, I will be in the hospital in Germany all week, not eating pretzels or drinking beer. The forecast says rain. I don’t have the energy for much sight-seeing. I can’t fit into any of my shoes. My suitcase doesn’t have room for heels next to all my stretchy pants, compression stockings, prescription bottles, and lung drainage bottles.

In truth, I will be happy when the ordeal is over.

That’s not to say i’m not looking forward to anything. I’m excited about the German train we will ride, about the food, about the apartment we’re staying in for a night. I want to know what an old east-German city feels like. I want to hear German spoken everywhere. I’m interested to experience the German medical system. I suspect I might just be more comfortable in an adjustable hospital bed than I am in my flat bed at home. And once i’ve done it once, feeling like I feel now, the next trip will hopefully be much easier.

As for the treatment itself, my hopes that it will work are buried somewhere inside of all the uncertainties. Where I might be lacking in hope, though, my friends, family, and complete strangers have definitely shown that they make up for it. I am surrounded in hope, and well-wishes, and prayers. For maybe the first time in my life, I really need that. I will think of it when i’m alone in my German hospital room. Hoffen. Hope.

I’m also bringing my new stuffed animal, who i’ve decided to name Leben. Life. May they guide me through this ordeal, along with my wonderful eltern (parents). Here we go. Los geht’s!

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elevate and wait

I have gained 10 to 15 pounds in the past three weeks. It’s all water. And it’s all hanging out below my belly button–mainly in my feet, ankles, and legs. I still have fluid around my right lung, but now I have a tube for draining that myself. Anyway, my lung cavity only holds a measly three or four pounds of fluid. I thought that was bad. Now, the rest is in my thighs. Which look and feel like tree trunks.

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.

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