squeaky wheel

My parents have always told me, “the squeaky wheel gets the grease.” I have always hated this saying.

I am not naturally inclined toward “squeakiness.” I prefer to stay quiet and have faith that people and things will pull through given a little time and patience. So most times they tell me that I need to be “squeaky” in order to make things happen, I secretly hate the saying to myself, say “that’s not really true in this situation,” and stay quiet.

I’m not sure why I decided to go into journalism with this philosophy… but I did, and I worked at my high school and college newspapers as well as several professional reporting jobs without having to ever get too squeaky. By squeaky, I think what I mean is calling or emailing repeatedly, leaving a ton of messages, yelling, getting emotional, or just being generally annoying.
I have noticed, though, the further I move into this cancer diagnosis and into adulthood, that my parents might be right. Cancer isn’t for the quiet.

Today is a perfect example.

I still have a pleural effusion. This accumulation of fluid around my right lung started when I had my surgery last February and has continued and continued and continued to now, despite near-daily draining through my chest catheter, a surgery in October that didn’t work, overall improved health, and steroids. Well, maybe the steroids will start working. The jury is still out. It causes me constant pain and discomfort and the longer I have it, the more I hate it. But this post is not about how much I hate my pleural effusion and wish it would go away so I can live a normal life.

Managing my pleural effusion and chest catheter and draining make me dependent on vacuum bottles (that cost an arm and a leg) that I have to get from a medical supply company. I have been doing this for 10 months, so I have a pretty good idea by now of how long I have to spend on hold to order the bottles and how long it takes to get them once I do this. Long story short, this time, the company failed and by this morning, the supplies still hadn’t shipped and I was out of bottles. Not wanting to go another day or night with pain, shortness of breath, and general discomfort, I decided to be a little squeaky.

I asked to speak to the supervisor. The supervisor said the bottles would ship today and that she would arrange a second shipment so I wouldn’t have to call back. This meant I would still have to go at least another day without draining. She was also just a little too unsympathetic, acting like she was shipping out an impulse purchase from Amazon instead of my medically and quality-of-life necessary drainage bottles. She even asked how much volume I drain every night, and when I told her, she didn’t stop to think how uncomfortable it might be to have that much extra fluid around one’s lungs.

So, goaded by my mother, I got still squeakier. I showed up at the place where I got the drain placed and asked the front desk if they could help me. Much to my surprise, the nurse and the scheduler remembered me from last year and were very sympathetic. I didn’t even have to cry or yell or threaten to call my oncologist. They “found” a few bottles laying around. Made my day. Then they called the company and complained, again, for me and I got the direct number of another supervisor and the assurance that I would be helped immediately if I ever had this problem again.

I think the moral of the story is, I have to speak up. I don’t have to necessarily be super annoying or angry if I want to see results, but I have to say something. Even though I feel most of the time that the medical system is too unwieldy and disorganized for any staff member to have any incentive for being extra helpful, it happens sometimes. In fact, this week I have experienced extraordinary care from two different nurses in two different departments. My faith has been a little restored. Also, the squeaky wheel gets the grease.

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finding a plan B

The crisis seems to have passed. But because I am not cured, will likely never be cured, I need a plan B, always a plan B. The cancer is laying dormant in my liver but is still somehow creeping around my bones, soft tissue, and lymph nodes, somehow a little resistant to treatment.

Predictably, each of my now four doctors have different opinions on a plan B that span the spectrum.

Oncologist 1 has scheduled scans to assess the cancer in my bones. He has referred me to a radiation oncologist. He is ready to start making my hair fall out with hardcore chemo drugs. He is worried and cautious and he thinks my treatment in Germany is not working.

Oncologist 2 wants me to drive to the next closest neuroendocrine expert and seek a what now must be a fifth opinion. He isn’t happy with how the treatment is working.

Oncologist 3 envisions a future for me traveling to Germany for treatment at least once per year for as long as I live, provided my bone marrow and kidneys are up to the assault. He doesn’t think there is any other treatment for me–or anyone–but PRRT. In Germany. Forever.

Oncologist 4 is all sunshine and rainbows. He smiles, pats me on the shoulder, pulls out his best talking-to-a-28-year-old-voice, and says, “You look completely healthy. You don’t look sick. Your body will return to 100 percent soon. Germany is working–I promise. Be patient”

My parents want me to get Oncologist 5 involved. They ask what I think.

I am thinking about my new apartment in the afternoon, yellow sunlight streaming through the windows, reflecting off the freshly painted walls, the new carpet. I am there, sitting at my future new desk with a mug of white coconut creme tea and a croissant, happily writing an article for my new job or a blog post or a chapter of my eventual book.

No… now i’m thinking about my next months being spent in fluorescent hospital rooms, windowless waiting rooms and exam rooms, shut up in cars and airplanes breathing stagnant air. Weeks spent away from my sunny new apartment, my soft new comforter.

I just got my life back, damnit. I’m over it. I’m over having cancer; not one but three weird chronic/recurring conditions that no doctor can quite explain or treat.

I’m done. I don’t want a plan B. Leave me alone. Let me live.

Wait.

I’m not that brazen. I’m not that brave. I’m scared of a spot popping up in my brain. I’m scared of bone pain. I don’t want to again reach the lows I reached last year. I don’t want to be caught without a plan B.

 

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the darkness and the light

It’s so light today. I’m sitting outside at a bright blue and yellow car wash with bright blue and yellow signs advertising waxes and detailing and hand washing. My car will soon be unburdened of the 15 bird poops unfortunately sitting unfashionably on its hood. The 80 degrees are soaking into my black dress and leggings and everything is moving slowly, so relaxed. It smells like wax and soap and sun.

There is so much light in my life lately. I am living like an adult again, without my parents, without my sisters. I am going out at night with friends and listening to music and playing games. I am going out during the day; places to go and people to see. I am spending time with my boyfriend everyday. I smile.

I am cooking, sometimes. I am eating a lot of things I didn’t feel like eating for a long time. I am weirdly obsessed with the combination of lox and tomatoes and cucumbers and cream cheese. I am rarely nauseated (miracle of miracles) and i’m slowly gaining strength. I am getting paid (a little) to write (a little). I am sorry I have not been writing here. I am no longer awkwardly a grad student who graduated last year but still isn’t working. I am a writer. (Someone at the car wash just asked me if I was one. I said “I guess so. Yes.” I am so LA.) I love it.

It’s a new year. My life finally feels like it’s moving on. My year of pain, 2013, is over.

It has taken me a few weeks to get used to the idea. Still, my pain didn’t end at midnight on January 1, 2014. It is so overwhelming sometimes I can’t control my tears, my spiraling mind, my racing heart. The hatred for the situation I find myself in today, 3 years and 93 days since I was diagnosed with fucking cancer. The frustration with my body for continuing to make and allow 400 plus or minus extra milliliters of fluid to collect in my right lung cavity everyday — and with the surgeon and the doctor for not fixing it with that surgery (that I didn’t want) like they said they would. The betrayal of my body for still feeling not-quite-well, for allowing the cancer to perpetuate. The upheaval with the pharmacy and the doctors offices and insurance companies when my out-of-pocket maximum reset at the beginning of the year. The drainage bottles, the enzymes, the insulin, the every medication that I use every single day cost an absolutely ludicrous amount of money. And I went and got cancer, and two or three other chronic conditions with it, so I have to pay for the rest of my life. (Unless Obamacare and future healthcare legislation has a fairer effect on the industry. Unless I move to Germany.)

It is scary and mystifying and awful that my life, filled with so much light today, sitting at the car wash, and most days now, can be filled with so much darkness. But the startling reality is that is life, isn’t it? So much darkness and so much light.

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to Germany and back again

I went to Germany (and Prague) and came back again and it feels so good to be home. Indescribably good. Not just because I have a couch I can sit on and a bed with unlimited pillows and I can eat whenever I want things that don’t involve meat or mayo or potatoes. Not just because the temperature is 70 instead of 30 and I can understand all the signs and the words being spoken and the prices and the culture. Not just because I don’t have to be uncomfortably cooped up on a plane for too many hours, held at security unnecessarily for more hours. I am not forced to stay in my hospital bed for one day and in my room for two days eating German hospital food, bread and cold cuts, and trying to slurp down as much water as my German doctor demands, which is never enough. When you are perpetually uncomfortable at home, being perpetually uncomfortable abroad is just that much worse.

There are so many things for me to dislike about going to Germany for treatment and by the third trip these things are no longer “part of the adventure” or quirky or new or in any way exciting. What once was a novelty has become a chore. The whole time I was there, I just wanted to go home. I probably would have felt the same way at an American hospital if I was stuck there receiving treatment, but when you don’t understand the language and they don’t speak much of yours it just makes it that much more frustrating. I’m pretty sure the doctors and nurses call me the American girl who cries a lot and still needs stuffed animals when they go on long German tangents in front of me. I don’t really care. I just want to go home.

Yet, for all the suffering and angst these trips now cause, the treatments seem to finally be doing some good. Like last time, I have some new lesions that have popped up around my body. But in my liver (where most of the problems are), we have achieved the goal: stable disease. And a little bit of shrinkage. So I must return to Germany in March and probably at least once a year for a long, long time after that… or until it stops working or I can no longer afford it or my body can’t handle the radiation anymore.

So I think I have to make peace with the long plane rides, the uncomfortable hotel beds, the side effects, and the fact that I don’t understand anything that’s going on. I can fix the latter by learning German, which I think I am finally going to do now that i’m in it for the long haul. The former can be fixed by attitude. And the better I feel, the easier these trips are going to be. Hopefully I will start feeling better.

i asked the doctor when I might expect to see some of my symptoms going away, the things I have been dealing with since last February: fatigue, pain, GI issues, nausea, weight loss, my pleural effusion (which the surgery I just had was supposed to fix). He said I would have to be patient. I feel I have exercised extreme patience these past 11 months, dealing with these problems that severely impede my quality of life as a once normal late-20s year old. Extreme patience.

It’s going to take some superhuman patience to wait out these lingering symptoms…some of which are not guaranteed to go away even if my liver returns to normal size and my cancer continues to die. My pleural effusion, for example, seems to want to perpetuate to the end of time. It doesn’t seem fair that I came by all of these symptoms almost overnight last February during my surgery, and now I have to wait maybe years for them to go away. It doesn’t seem fair that I was diagnosed with cancer three years ago and I am still dealing with it. Now and for the rest of my life.

I have started calling 2013 my lost year and I am looking forward to 2014 as a year when I can move past these lingering symptoms and cancer that takes over and start living my life again, the way I want to live it. A few things have already begun falling into place for the new year… I just hope that next year I will be able to look back on this time as a dark period in my life, never to be returned to again.

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things i am not thankful for

I have actually been writing a lot lately. Out of my fingertips have been pouring my darkest thoughts about cancer, things I just can’t bring myself to inflict on my readers without the context of a dozen “happy” posts on either side. You will have to wait until my book gets published to read them. Unless some of them come out here.

It turns out that while I have been thinking and writing these dark words, someone else was thinking them too and wrote a wonderful piece for Gawker putting almost everything I have been thinking and feeling into words.

You see, it is almost 2014, and almost nothing has changed since this summer, since this spring, since that day in February when I had the surgery that set everything in motion that has colored these past almost 11 months. Yes, I got somewhat better, I got somewhat worse, I got better, I got worse, I got a little better. I am still one tube down (my PICC line), and waiting a very, very long time to get my other one (my lung catheter) out. But when I complain to my doctor about my persistent nausea, he says to me, “Your body is still spending a lot of energy fighting cancer and healing. You need to rest.”

I say, “I have been resting for 11 months and I’m tired of it.” I ask him if he thinks I will ever feel a hundred percent better and he says yes. “You need to give PRRT more of a chance to work. It might take many more months.” When I try to walk up the stairs to my apartment, still, I wonder if I will ever walk up stairs and not feel like an old lady again. What is it like to feel young?

Do you see what happened two paragraphs ago? I started writing about how awful I have felt since February and I ended up cushioning it with “getting better” and getting a tube taken out. I did that because everyone tells me to be positive all the time and that’s what you do when you are in a shitty situation and you try to be positive about it. That’s where all of my “i am a liver” stuff comes from, that’s why when I write something depressing I almost always try to write something I’m thankful for with it. I’m thankful for a lot–I expect I will be reflecting on that more in the coming week.

It is true that it is a more pleasant for myself and those around me to feel positive, to have a good attitude. I can do that. I do do that most of the time, without thinking about it, without forcing myself to. I don’t feel like doing that right now. There should be a place and a time for the negative feelings and attitude. They are part of the experience, and they are impossible to push away completely.

The truth is, I don’t believe that thinking positively will in any way help me get better. I don’t believe it’s as simple as that. What does positive thinking even mean? Is it visualizing positive outcomes all the time and ignoring everything else? That doesn’t sound healthy to me. It’s impossible to be positive all the time, and faced with a terminal illness on top of feeling shitty all the time and having nothing productive to do with one’s day, it’s hard to be positive at all.

This is clearly not the typical cancer patient (or cancer liver) rhetoric. Cancer patients ignore all these things and run marathons, they change their unhealthy eating habits, they triumphantly return to life from treatment and run for mayor. I have so many friends who have done amazing things during and after their cancer treatment and sometimes I wonder why I can’t be more like them. But maybe from the outside I look like them. I got my master’s degree while I had cancer. I write a blog. But I also sit on the couch all day and feel sorry for myself.

In the eloquent words of Lauren Sczudlo on Gawker, “Cancer patients are expected to be poster children of a movement, meant to reassure the masses that this plague, and even imminent death, can be overcome with positive affirmations and attitude adjustments. We are a society that believes in control, to the point of delusion. We are a nation founded on the idea that any obstacles can be surmounted and dreams reached through hard work and self-control.” She then admits, “I am the unpleasant face of cancer. I am not accepting pain and loss gracefully. I am a disappointment.”

I feel like this too. I cushion all my negativity with positivity. I am afraid to post my darkest words because then everyone will know that I’m not brave and I’m not dealing with this disease in any special or inspirational way. I am negative just like everyone else and I think this whole situation sucks. Screw the silver linings I have found. I would trade my writing voice and my wonderful cancer friends and my new, more mature and relaxed, perspective on the world for not being diagnosed three years ago. I think.

“Many people want to believe that cancer can be overcome with enough willpower and exuberant positive affirmations,” Sczudlo says. “The notion that we can control cancer by dieting—cutting gluten, dairy, GMOs, and alcohol from our diets or binging on kale juice, green tea, and soy—has trickled into Facebook feeds and taken over targeted ad space. We feel more in control of our lives if we believe sick people got that way by making bad choices. This hopeful but woefully misguided belief that if the cancer patient eats like a Paleolithic person or ignores her fears, she will ‘beat the odds,’ denies patients the freedom to mourn the loss of her old self—because cancer almost always kills a more fearless version of ourselves.”

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patience vs. extreme patience

If these past ten months were an exercise in patience, then the past two weeks have been an exercise in extreme patience. And trust in doctors. I had been feeling so good. I was ready to begin my life again—but I was swiftly catapulted back in time to February and December 2010 when I laid stiffly in my hospital bed, connected to IVs and drainage tubes. Again, I needed help making it to the bathroom. Again, I was in pain. Again, I could barely keep my eyes open. Again, I wasn’t allowed to shower for nearly a week. Again, I was up all night vomiting the nothing in my stomach.

These more severe side effects of surgery were short-lived, and I somehow made it out of the hospital in record time. But when I got home I felt like I had felt back in the spring, weakly padding around the house, pushing myself up from the couch, not hungry, sleeping sitting up. I left the hospital not with zero tubes, like I had hoped, but with both tubes (my PICC and lung catheter) still intact. Why did I have the surgery again? Oh yeah. So I could get some of my quality of life back. Not as advertised early on.

Still, I have been extremely patient. I think some of this was due to the distraction of having my sister, aunt, and boyfriend around to help out, keep me busy, and occupy my mind. Sure enough, in the past week and a half since I left the hospital, I finally had my PICC line taken out. That took a minor miracle, a nice nurse, and a prompt doctor’s call back on a Sunday. I took one of the most amazing showers of my life—finally able to wash out my week-old hair with both my arms since I had no PICC to keep clean and dry. I have called and emailed my doctors panicking about my still-high drainage volumes, but I have watched them gradually decrease… they’re not optimal yet, but I have an appointment to get that tube taken out next week. Dare I believe it? That the surgery might finally be working? I have had this stupid tube in my chest since late April. I have changed the way I dress, the way I sleep, the way I shower, the way I move to accommodate this thing. Could it really be almost time for it to come out?

Against all of my pre-surgery bedfellows, I’m preparing to go on a little trip this weekend with some friends. I won’t be able to get in the hot tub like I had wished, I still have to bring an extra bag with my drainage supplies, and I’m not quite up to doing much walking let alone hiking, but considering two weeks ago at this time I felt like I was hit by a bus, I think my patience has paid off. Extreme patience.

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today is my cancerversary

Those of you who are keeping track know it’s my cancerversary today. Three years ago today I was called into a little exam room with my gastroenterologist, a heptologist, my parents, and a picture of a liver on the wall, and was diagnosed with pancreatic neuroendocrine cancer. I didn’t even know what a pancreas was.

I didn’t write much about cancer back then–I think I was shocked into silence by all the major life changes that had occurred in quick succession (move across the country, start grad school, break up with boyfriend, get diagnosed with cancer). But I remember thinking, rather naively, that I didn’t want to become “one of those people” who lets cancer define them or change them. Out of respect to my 25-year-old self, maybe I haven’t let cancer define me necessarily, but I think I have taken it by the horns and created amazing and positive things out of it. This blog. My viral video. Stronger relationships with some of my friends and family members. New relationships. I don’t know who I would be if I wasn’t diagnosed with cancer three years ago today, but I wouldn’t be me.

Yes, at times, cancer has taken me by the arms and legs and created uncomfortable, painful, terrible things for me. Most notably, the past nine months. Today, in fact, I “celebrate” in the hospital or just out of the hospital (I am dutifully writing this on Monday night) from a procedure/surgery to fix a lung fluid draining problem caused by my surgery in February. If you asked me three years ago where i’d be three years from then, I probably wouldn’t have mentioned anything about a hospital. I wish I wasn’t so familiar with hospitals and procedures/surgeries. But then, I was naive to the power that cancer has, both good and bad. I think I thought I might be cured in three years.

Well, i’m not cured. But cancer hasn’t taken over, either. I can’t do anything about the power that cancer has. I can make the most out of it, I can say that it sucks. It does suck. I can power through the bad parts. I can just try to live as normal a life as possible, only with this unpredictable beast growing (or hopefully not growing, and in fact, shrinking) inside me, Sometimes making life decisions for me. In short, I can be a liver.

Today i’m remembering my cancer support groupie and my great aunt.

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limericks from a caregiver

If you will remember, I promised a post from one of my sisters, the other half of my “cancer-butt-kicking-staying-happy team.” It was worth the wait.

Just like all of you, I am one of Lindsey’s longtime faithful readers. Just like you, I continue to marvel at Lindsey’s writing, her amazing voice, her strength and courage in sharing such personal thoughts, and her ability to cut through all the fluff and fog of cancer treatment and clearly focus on one theme or topic to share. And just like you, for the past three years I’ve been trying to do everything possible I can think of to help. Because feeling helpless simply sucks.

Who am I? I am Lindsey’s younger, though middle-of-the-family, sister. I am The Pillow Engineer. I am Nurse Sara. I am most recently a graduate student in a new city 500 miles away from my patient/sister/friend.

I should have written this post immediately after moving (like I meant to), before I was sucked into my new, busy life up here (like I knew I would be). All in all, I’m impressed with how well I’ve managed this transition from my former, pretty selfless life of being Nurse Sara, wrapped up in everyone’s health, to this fairly selfish and Sara-centric life as a graduate student working to get started on a career.

It has been pretty easy to not feel like I was missing anything big–Lindsey has been feeling really good lately. Well, until now. Tomorrow morning Lindsey has a procedure (to hopefully clear up the lung fluid issue she has been dealing with since her surgery in February) and a short hospital stay after. And I won’t be there. Instead, I’m flying down this weekend to play Nurse Sara again for a few short days.

I know I’ve been blessed to have been near Lindsey for the past three years. I was in LA with her when she was diagnosed and, though I felt helpless and had no idea what to think or do, I knew I had to find some small way of showing love and support. The day after she was diagnosed I met Lindsey on campus and loaned her a plush white blood cell (I believe it’s helped raise her neutrophil counts at times!) and gave her a limerick I wrote:

I know a girl with a naughty pancreas

Whose liver is causing quite the fuss

She is my sister

(I’m glad not a mister)

And having her nearby is lately a plus

Since then, I’ve continued to try to show love and support whenever and however I could. Usually it was little things and never really felt like enough, so I was more than ready to spring into action after Lindsey’s surgery in February. I already had experience being Nurse Sara after my dad’s accident last year, so I was almost excited at the prospect of being able to help out in such a tangible way. And though it has been painful to see Lindsey in discomfort, nauseous, fatigued, and acting and feeling more like a cancer patient than she has for the past couple years, I’ve also been able to enjoy her company pretty much nonstop for the past several months. Now we are closer than ever (and we were already pretty darn close) and all of those Nurse Sara moments, no matter how small, made me feel like a useful and an active participant in this fight.

Unfortunately now Nurse Sara can’t do as much 500 miles away, though I still try to keep myself in the loop as much as possible. But all those tangible things I did—driving Lindsey around, scheduling appointments, running errands, cooking meals, connecting/disconnecting the TPN—are now being done by my parents or Lindsey herself, so it’s been hard since moving away for me to not feel like I have increased the burden on everyone I left at home. I suppose I should be grateful that I was able to lift part of the burden off of everyone for the past couple of years, but now I am finding it rather difficult to come up with new ways for me to feel less helpless.

I’m still fighting a bill battle for Lindsey (well really as Lindsey, but that’s a whole other story). I’m contemplating being the Pillow Engineer again. But all that just seems small in the face of what I used to do. That being said, it has been comforting with all the major life changes to know that all my alter egos are still there if I need them. In fact, Nurse Sara came in handy when a new friend drank too much on an empty stomach. Since vomiting does not faze me one bit now (Thanks to Lindsey for that?), I was more than happy to keep her company and get her water until the nausea passed. It strangely made me feel closer to home.

I guess overall I just feel incredibly lucky to have been able to help so much lately. And I am very much ready to put on my nurse hat again, even if only for a few days. It will be really good to feel useful again. It will be even better to hang out with Lindsey.

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happy cancer birthday to me

On my little sister’s fourth birthday, she had a bad case of the chicken pox. Very shortly after that, my other little sister and I both caught it too and I just remember spending the next week covered in that chalky pink anti-itch lotion, head to toe. We rescheduled her birthday party–at Chuck E. Cheese’s if I remember correctly–and forever after her fourth birthday was infamously known as “the chicken pox birthday.”

Today is my birthday. I am 28. I may not be quite as sick as my sister was on her sick birthday, covered in itchy red bumps, but i’m recovering from being far sicker than i’ve ever been before and will hopefully ever be again. Even when I had chicken pox. It’s “the cancer birthday.” And I don’t feel like celebrating.

I have treated the last two birthdays that I have had since I was diagnosed three years ago as celebrations of life, planning each day so I was surrounded by good friends (or friend), doing something special. Having a birthday becomes meaningful when you’re living with cancer because it’s another year of surviving. Two years ago I went to Santa Barbara and saw one of my favorite bands play. Last year, I spent the whole day traversing Chicago, visiting all of my old haunts (though both of the restaurants I wanted to go to were mysteriously closed).

This year I am living at home. Feeling worn out. Surrounded by family, but still, contemplating a minor surgery i’m having a week from today and hospital stay to hopefully correct my still-present, supremely annoying, post-surgery lung fluid problem. I stubbornly don’t want to give my 27th year the satisfaction of celebrating it. It was not a good year.

My friend turned this feeling around on me today. He said, “You should be celebrating. You’re putting your bad year behind you and now you can start fresh. 28 will be better.”

I hope he’s right. And while I would have preferred not to have experienced most of the things I experienced at 27, there are some relationships I have strenghtened and some things I wouldn’t have changed. This past weekend with my boyfriend, for example. And the weekend before that with my parents. I don’t want to start trying to find the silver lining in 27, though. It doesn’t feel genuine to the experience i’ve had. It doesn’t feel natural. It was a bad year. I thought my 25th year was bad, with being diagnosed, having major surgery, starting grad school, moving cross-country, and breaking up with two boyfriends. But 27, you take the cake. I have never been so emotionally and physically beat down.

So i’ll just leave it at this: 27–you sucked. 28–I really wish you’re better. I need a break. Cancer birthday, you have been nice, but someday you may go down in infamous birthday history. I hope to have only healthy birthdays from now on.

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fatigue

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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