Step 2: Visit Carmel

I’ve decided that anyone who needs to train for a 5K like me and Zack or just plain get some exercise should visit Carmel. If you stay somewhere close to downtown, as we did on our recent 3rd anniversary getaway, you’re within walking distance of anywhere you need to go. We were ideally situated directly between the beach and the rest of the shops and restaurants Carmel has to offer and were therefore able to walk along the beach in the morning, hike and shop in the afternoon, and eat at a great local restaurant at night, all without opening a car door.

Little did I know that our choice of lodging would unintentionally help prepare us for our upcoming 5K. On our second day in Carmel, my trusty pedometer reported that we had walked 7 miles by lunchtime! After lunch at a tiny yet delightful Mediterranean cafe called Demetra, where one of the waiters burst into song right after I entered, I shuffled back to our room and collapsed into bed. Two hours later, I woke up drooling (that only happens when I’m REALLY tired) and stretched my aching muscles. I was ready for more, though not quite as ambitious. We finished the day with a modest 9 miles to our credit. At this rate, walking a 5K will be a piece of cake.

Flashbacks

Yesterday I had an MRI at 9:30 pm (what genius came up with that schedule?) for my sinuses as a last-resort attempt to discern the reason for my loss of smell. While waiting for my turn in the claustrophia-inducing machine, my mind started wandering to previous MRIs and scans I’ve had. Flashbacks such as these are a common occurrence for me whenever I get anywhere near the hospital and have historically been a source of much anxiety and fear. Before my bone marrow transplant, as a matter of fact, I met with a psychologist friend who taught me some cognitive strategies to deal with these PTSD-like symptoms.

Typically, the body’s natural response to negative flashbacks is to try to push them aside and ignore them, which never works very well. My friend taught me to instead recognize the fears caused by these flashbacks and consider both the expected outcome and the realistic outcome, which helped me to focus on the truth rather than on past experiences.

I’m currently reading Life of Pi, one of those national best-sellers that I tend to be skeptical of, but once I give in and read it, becomes one of my favorite books. The Harry Potter books fit in this category. The Twilight books do not. My favorite chapter so far is about fear, and I’d like to quote a large chunk of it here because it so completely describes the feeling I’ve battled incessantly for the past two years and how to overcome it.

“I must say a word about fear. It is life’s only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know...It begins in your mind, always. One moment you are feeling calm, self-possessed, happy. Then fear, disguised in the garb of mild-mannered doubt, slips into your mind like a spy...Quickly you make rash decisions. You dismiss your last allies: hope and trust. There, you’ve defeated yourself. Fear, which is but an impression, has triumphed over you.
The matter is difficult to put into words. For fear, real fear, such as shakes you to your foundation, such as you feel when you are brought face to face with your mortal end, nestles in your memory like a gangrene: it seeks to rot everything, even the words with which to speak of it. So you must fight hard to express it. You must fight hard to shine the light of words upon it. Because if you don’t, if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never truly fought the opponent who defeated you.”

So yesterday, instead of trying to push away the flashbacks of past MRIs that went wrong and consequently only delaying an inevitable resurgence of fear, I allowed myself to reflect on those experiences. The result was that I felt sadness as I remembered the times I threw up in the middle of a scan, couldn’t breathe, had to go without contrast because of my failing kidneys, or couldn’t lie flat enough to even complete the scan. But I also felt a sense of amazement and gratitude as I realized how far I’ve come. I got an MRI yesterday to diagnose an inconvenient and troublesome issue, but not a life-threatening one as in the past. I went into it feeling fine, and though it was uncomfortable having to lie still with my head securely fastened to a plastic mask-like contraption inside a narrow tube for an hour, I was able to go home with my husband afterwards rather than back to a hospital room. When I consider how much of a better position I’m in and how much God has healed and blessed me, flashbacks no longer have to cause me the anxiety and dread they once did.

Step 1: Walk a 5K

In my quest to complete a half-marathon, I’m starting with the slightly more attainable goal of walking a 5K. Gotta start somewhere, right? I got the idea when some friends of ours told us that they’re running a 5K on the morning of New Year’s Eve around the beautiful Lake Chabot in Castro Valley. Initially, I felt kind of sad hearing them talk about it because it reminded me of my goal to run a half-marathon, which my physical therapist advised me is no longer a good idea since I developed compression fractures in my back earlier this year due to long-term steroid use. But then I thought, what if Zack and I walked it together? Even if I can’t run, I’m still pushing myself and achieving something by walking that distance, and I’m getting to spend valuable time and create memories with friends in the process.

I’ve been fairly active and athletic my whole life, so I didn’t even consider needing to “train” for walking a 5K. But then again, I’ve never recovered from a bone marrow transplant. Zack suggested that we practice walking a 5K to see how long it would take us, so yesterday afternoon, we set out on our trek. I have to admit, I was pretty sore afterwards and slept like a baby last night, but I felt like I accomplished something. This week we’re hoping to walk a couple more 5Ks during our anniversary trip to Carmel, where the scenery should be a tad nicer than the apartment buildings and convenience stores of our neighborhood :).

Redefining Buffness

I used to measure my strength in terms of weight, as in I can bench-press 80 lbs. (come on guys, that’s actually pretty good for a girl), which I haven’t been able to do since weight-lifting during basketball season in high school. Now I measure my strength in terms of daily tasks, as in I can carry 2 grocery bags up the stairs without falling over and/or stopping every 3 feet to catch my breath. I can now do my own laundry, a huge deal considering that someone else has had to do my laundry for the past eight months because I wasn’t strong enough to carry it up and down the stairs by myself (that, and I wasn’t allowed to leave my apartment for the first three months post-transplant in order to carry the laundry to and from the laundry room). Instead of patting myself on the back for leg-pressing 200 lbs., I’m happy to be able to lean over and empty the dishwasher without straining my back!

It wasn’t too long ago that I couldn’t tie my shoes or put lotion on my legs without leaning on my knee for support. I couldn’t even retrieve a pan out of the lower kitchen cabinet or open the bottom drawer of my dresser. Now I can bike for 20 minutes on level 5 (out of 20, but better than 1, which is what I started at!), do lunges while brushing my teeth, and sit for an hour without feeling like I gave an elephant a piggy-back ride. Compared to what I’ve been able to do at various times in my life, it’s not much, but I’m learning I don’t have to compare and be “better” than anyone, including myself, to feel content. Besides, in the grand scheme of life, when I’m old and gray and looking back at my life, will it really matter how many lbs. I could bench-press? I can be happy just as I am and feel encouraged by any amount of growth, no matter how small.

1 Samuel 16:7b NIV
"The LORD does not look at the things people look at. People look at the outward appearance, but the LORD looks at the heart.”

Psalm 147:10-11 NCV
10 He is not impressed with the strength of a horse
   or with human might.
11 The Lord is pleased with those who respect him,
   with those who trust his love.

Harder Than I Thought

This whole post-transplant recovery thing has been harder than I thought. Around this time last year, I was giving leave at my various odd jobs (odd as in part-time and varied, not odd as in strange) in anticipation of getting admitted to the hospital very soon for a bone marrow transplant. I can’t believe it’s been a whole year since then. From a “big picture” point of view, I’m doing very well compared to this time last year, when I was feeling pretty normal but had some underlying, subtle signs of a relapse of my immune disorder brewing.  Elevated liver enzymes, high inflammation markers, and the haunting realization that my body had reached its maximum capacity for my toxic chemo all pointed to transplant as the only real cure for my disease. So why did life seem so much easier then than it does now?

The truth is, life is easier when you have a plan, know what you’re fighting, and know what to expect, more or less.  You can get prepared rather than just “be patient,” as I’m having to do now. Months before transplant, I started accumulating parking passes, comfortable hospital clothing, knitting materials, and Otter Pops, among other things. I set aside magazines, asked a friend to teach me to knit, boxed up my favorite movies and games, and even had an early birthday party, since my 26th birthday would take place in the hospital. On February 7, the day I got admitted, I was ready.

Nine-plus months post-transplant, there are no more milestones left to reach, but only the endless waiting, waiting, waiting for my immune system to fully recover, as measured by my lymphocytes, monocytes, and various other obscure cells and functions that are beyond my comprehension. It’s easy to grow weary and even depressed by this waiting process that’s entirely outside my control. I got As my whole life, but no matter how hard I try, I can’t get an “A” in immune system recovery. However helpful they might be, no amount of medication, exercise, diet, or happy feelings will “make” my lymphocytes suddenly shoot up; they simply take time to accumulate and become functional. I suppose it’s a gift that I’ve been forced to confront the fact that life is so obviously out of my control, since I don’t believe any of us actually has control over our own lives, only over our decisions. But in order to remain hopeful and determined at this unpredictable stage of my life, I need to remember what motivated me and helped me push through before transplant so I can do the same now.

The Art of Christmas Tree Decorating

On Saturday Zack and I went on a Christmas-tree-decorating rampage. In the span of a few hours, we managed to adorn 2 10-foot-tall Christmas trees, neither of which was ours, with a variety of lights, beads, and ornaments, pose for innumerable Christmas photos, AND watch a Christmas movie (Christmas with the Kranks...I don’t recommend it).

You’re probably familiar with the fact that Christmas-tree decorating is quite an ordeal. The process begins with locating and unloading boxes of Christmas decorations and is followed by untangling and testing the lights, replacing bulbs (or more commonly, hiding the burnt-out bulbs behind large Christmas tree branches), reminiscing over old and/or handmade ornaments (“remember this lopsided Santa I painted when I was 4?”), and forlornly throwing away the broken ones. All this must occur before a single light or ornament  can be placed on the tree.

Before the ornaments can be hung, the lights must be strung around the tree (Zack and I switched these steps on accident). Next comes the placement of the tree-topper, usually performed by the alpha male of the family. This step always makes its onlookers quite nervous, as the alpha male balances precariously upon an object that is way too short and/or ill-suited for the task at hand. In my dad’s case, this was a stool balanced atop a chair, with Zack acting as spotter. After trimming, mounting, and straightening the tree and stringing the lights, my dad was so exhausted that he proceeded to collapse on the couch for the rest of the tree-decorating process, from which he had a clear view of our ornament-hanging and could criticize accordingly :).

After the tree topper is placed, everyone breathes a sigh of relief and moves on to the main task of hanging the ornaments. Each family has its own special way of completing this step. Some designate certain ornaments to be hung only by certain family members, under penalty of death. Usually the heavy or breakable ornaments are kept away from small children and they are directed instead to a pile of “special” ornaments that include those already broken or too ugly to care about. As we sifted through the ornament boxes, I found that a suspicious number of my parents’ ornaments are missing their eyes. I tried to compensate for this disturbing phenomenon by drawing them on with a black Sharpie. Not the same.

As the night drew to a close, we sipped apple cider, munched on chocolate chip cookies, and proudly observed our handiwork. Happy decorating!

The Holidays...Not Worse, Just Different

There aren’t many areas of my life that are unaffected by my health, and the holidays are no exception. I’ll never lose that feeling of nostalgia when Christmas songs start playing on the radio, and the lights on our Christmas tree will always make me smile, but there are other aspects of the holidays that are drastically different this year as a direct result of my health. Smell, taste, and travel are three of the main ones.

Smell:
As I’ve mentioned before, I started to lose my sense of smell about six months ago and have yet to regain it. On a typical day, I don’t think much about this, and there are even some unexpected benefits (e.g. public bathrooms don’t bother me nearly as much anymore). Lately, however, I’ve been realizing how many smells I associate with the holidays and how much I miss them. The warm, cozy feelings evoked by the pine scented candles, hot apple cider, freshly cut Christmas trees, and warm cookies in the oven are lost on me. For now, I’m trying to live vicariously through others’ enjoyment of these smells, such as when Zack comes home to me cooking and tells me the house smells great. Cooking without smell, however, presents an unexpected danger: I need Zack and our smoke alarm to make sure I don’t burn down the house!

Taste:
Eating with your nose plugged is a great strategy if you need to take some nasty-tasting medicine (something I’m very familiar with), but not such a good one if you’d like to savor your aunt’s homemade Danish pastry, which just thinking about makes me salivate. Eating without smell is basically the same thing. This Thanksgiving and Christmas, I’m missing out on the deliciousness of apple pie, mashed potatoes, peanut butter pie (my mom’s specialty and my FAVORITE), and spinach souffle (another odd but delectable family favorite), to name a few. Without taste, I’m all about texture. The upside? I’ll probably be eating much healthier than usual over the holidays, since fatty, greasy, and sugary foods are usually enjoyed for their flavor, not their texture. Which means that while everyone’s enjoying dessert, I’ll be going back for seconds on the green beans. OH yeah.

Travel:
For the past decade or so, my family has made an annual trek to Elko, NV to meet my mom’s sister and family from Wyoming for Thanksgiving. We stay in a hotel and heat up our Thanksgiving feast in microwaves, a bizarre yet awesome tradition for which you’d have to be there to appreciate. This year, however, the 13 hour each way road trip didn’t seem like the best idea for someone dealing with nausea and, at times, frequent bathroom trips. So instead, my aunt, uncle, and cousin are coming here for Christmas :). Our ability to visit Zack’s family in Virginia is also restricted by the fact that my weakened immune system makes it extremely risky to fly on a plane, and somehow a 3000 mile winter road trip doesn’t sound like my idea of a fun way to spend Christmas. Since we won’t be seeing them over the holidays, we’ll spend more time connecting over the phone and valuing the time we do see them that much more.

They say that when you lose one sense, your other senses are heightened. I think that missing out on certain aspects of the holidays makes me appreciate other, perhaps more important ones, more.

Confessions of a Bookaholic

I was recently browsing some old pictures and came across this one of my aunt reading a book to my one-year-old self. It’s okay, you don’t have to say it. I know I’m cute (though not as cute as my sister at that age...she’s the one staring at the camera looking like a porcelain doll). But this picture makes me think about my love of (some might say obsession with) books and how early it started. 

My grandma loves to tell stories about me learning to read as a two or three year-old. Apparently, I amused myself by flipping through books and "reading" their pages aloud to whomever would listen. Her favorite story is of a time she overheard me talking and peeked her head into the room to see what was going on. I had placed my stuffed animals and dolls in a circle around me and was animatedly "reading" a Christmas book to them. I flipped to a page that showed Jesus in the manger and loudly declared, "Everyone, gather round! The Savior will be born in three minutes!" 

In second grade, my best friend Alana T. and I (don’t ask me why I called her Alana T. instead of just Alana...rapper name perhaps?), bookworms that we were, asked our teacher if we could start a class library. We assembled all the class books in one area and created a sheet that students had to fill out in order to check out books, complete with an elaborate book-labeling sticker system (stickers being our other shared passion). I don’t know how my classmates felt about it, but I thought the class library was the single coolest thing about second grade. 

Growing up, I always loved visiting the library and still do to this day. My favorite thing to do at the library is attend their book sales. Library book sales are what enabled me to fully stock my 8th grade class library in my first year of teaching without going bankrupt. Seriously...Scholastic recommends that class libraries hold at least a couple hundred books. At retail price, we’re talking thousands of dollars. But at $5 a bag, that quota is quite reasonable. Sure, some of them are missing a page or two or are detached from their binding, but that just means they were well-loved :).  

I recently dragged Zack to our local Sunnyvale Library book sale and was practically giddy as I rummaged through their huge selection. Overlooking the fact that the room was dusty and jam-packed with people (not the best place to be post-transplant, but not to worry, I wore my mask), I was happy as a clam. My problem is that I seem to find a use for any and every book. A 2003 copy of Resume Writing would be perfect for my friend who just graduated! Nevermind the fact that we live in an apartment; Gardening for Dummies is the book for me! I found six SAT books to add to my already extensive tutoring collection but sadly put two back at Zack’s insistence. As an English teacher, I feel a compelling obligation to read “the classics,” so into my bag went Animal Farm and One Flew Over the Cuckoo’s Nest. I also purchased Dave Barry’s Complete Guide to Guys. Don’t worry ladies, I promise to share what I learn in a later post.

Buying all these books has its drawbacks, though. For one, they take up a lot of space. Besides the hundreds of books filling my class library, I have several book boxes in storage. After making several trips back and forth to the storage unit, Zack began to protest, so I decided to come up with a solution. What do I want for Christmas? A new bookcase :). 

Happy Thanksgiving

When I was 17, I was diagnosed with cancer. The day after I found out, I started chemotherapy so intense that I spent two to three weeks a month in the hospital. Yet I’ll never forget that in that first week of my treatment, while vomiting, losing my hair, and being told that I wouldn’t return to school to finish my senior year, I decided to make a gratitude list.

My list contained such items as “my sight and hearing,” “my family,” “competent doctors” and “decent hospital food.”I don’t remember what compelled me to write such a list at such a difficult, confusing, and frightening time in my life, but I remember realizing that there were so many things in my life that I took for granted. At a time when I could so easily feel sorry for myself and focus on how hard my life was and how many of my dreams and plans had been shattered, I chose to focus on what I did have and what a blessing that was.

I’m ashamed to say my attitude then was in many ways much better than it is now. I may tell myself I’m more “mature” and “experienced” now, but the truth is that I was often more positive and faithful at 17 than I am at 26.

But I don’t intend to stay that way. I’m a Christian, which means I believe that Jesus died for my sins, giving me the opportunity to be a completely new person every day of my life. I don’t need to be stuck in the negativity and bitterness that can so easily consume a person’s life when he or she is confronted with suffering and loss. I can choose, as I did at 17, to be thankful. When I do, I realize that though I’m going through many difficult things that most people don’t have to deal with, I also have many blessings that other people don’t. We all have different burdens and different blessings, and who knows if we’d be able to handle someone else’s load?

I’m not going to list a new “gratitude list” here for the sake of space and time, but I’m going to try to adopt that attitude and think about the things that are going well and the blessings God has given me instead of the problems.

Philippians 4:6-7 CEV
Don't worry about anything, but pray about everything. With thankful hearts offer up your prayers and requests to God. Then, because you belong to Christ Jesus, God will bless you with peace that no one can completely understand. And this peace will control the way you think and feel.

P.S. You may think this post is a bit late, seeing as Thanksgiving was a couple days ago, but my Canadian friend recently informed me that Thanksgiving in Canada is celebrated in October! So I figure Thanksgiving has yet to arrive this year in some part of the world; either that, or I’m getting a head start for next year.

Heavenly Lettuce

Crisp. Moist. Refreshing. Naturally tasteless. For a person without smell or taste, this is as good as it gets. Since I lost my sense of smell and have yet to find it, I’ve been searching for foods that have interesting texture rather than flavor, since the flavor is lost on me. In fact, foods that naturally lack flavor, such as white rice or lettuce, tend to be more pleasing to eat, since I don’t feel the loss of taste as much when I eat them (as opposed to garlic bread, ice cream, and pizza, whose present lack of flavor only serves to depress me).

The one problem with lettuce is that it must be eaten raw, and that’s a no-no for an immuno-compromised person such as myself. Peeling and/or cooking fruit and vegetables is what ensures the harmful bacteria residing on their surfaces die a slow and painful death. Unfortunately, lettuce has no skin to peel, and have you ever tried to cook lettuce? I don’t recommend it.

This week I practically begged my doctor (for the thirtieth time) for the green light to eat this forbidden veggie, as well as raw tomatoes (another one of my cravings), and she finally gave in, with a strict warning that I pick an unbruised specimen and wash it thoroughly before consuming. I don’t know what you’re thinking, but in my mind, that was practically an invitation to get some In N Out, which is exactly what Zack and I did. One order of protein-style (so I could better enjoy the crispness of the lettuce) with grilled onions and well-done fries, and I was a happy woman. I only wish I got the double.

"Big Brain" Hurts Ego

Lately I’ve taken up playing “Big Brain Academy” on the Wii in some of my free time; you might remember me mentioning this as a game I requested while in the hospital for my bone marrow transplant. When offered a choice of any Wii game on the market, who chooses “Big Brain Academy”? Maybe now you better understand my choice of occupation.*

Though I’ve owned the game since February, I haven’t played it much. I guess growing up as one of those severely deprived kids who never owned a video game system taught me to develop odd hobbies like reading and talking to friends instead. But as I’ve been playing Big Brain more frequently, I’ve noticed several strange quirks.

First, as you'll see in the image posted, the “host” of the game is an unidentifiable, unusually-shaped, yellow blob that communicates through mysterious phrases in annoying “computer-speak.” This blob has some semblance of a head with eyes and whiskers, arms, and a trunk but is lacking all other typical body parts. Is it supposed to resemble brain matter? I have no idea. Second, the blob seems to love the sound of his own voice, because he gives a lengthy commentary after EVERY game. The worst part is there’s no button you can press to skip the commentary! And finally, not unlike several of my former coaches, the blob employs the use of insult to act as motivation for the player. And not even mild insults either, but full-on zingers dripping with sarcasm. I’m not joking; he says things like, “Did you hit the snooze button? Because you just slept through that one!” Even though I hate the concept, I have to give major credit to the blob’s creator. Whoever can use a video game blob to make a person feel like a pathetic loser is pretty ingenious.

Last weekend, I learned that the blob even calls people out individually when they’re playing in teams, adding further to their humiliation. If it wasn’t embarrassing enough getting insulted by a freakish-looking video game character, now try enduring the ridicule in front of friends and family. I won’t name the victim here, but I attached the picture above as evidence ;):

*Teacher and tutor, of course!

Musings of an Itchy Insomniac

I try to keep this blog lighthearted, so many of you probably don’t realize that although I joke about things like my itchiness and hospital stays, I actually often feel very discouraged and sad. The past week and a half has been extremely challenging because I’ve been experiencing constant itching resulting from unexplained liver problems, specifically high bile acids. The itching interferes with my thinking, sleeping, eating, working, and pretty much all other aspects of life, and sometimes makes me feel like I’m going insane.

I don’t understand why this is happening on top of everything else, and I question “why me?” just like anyone would. I’ve had quite a few “breakdowns” over the past few days and have felt pretty angry at God. I’ve grown up going to church and always trying to do the right thing, so it’s easy for me to know all the right answers and the things I’m “supposed” to feel or not feel, but that’s not what’s real. What’s real is that I’m not giving up, but I’m having a really hard time right now.

Talking to Zack, my mom, and a few friends and reading some scriptures my friend emailed me have helped the most. I haven’t prayed much during all of this, partly because I’m often so itchy that it’s hard to sit still for more than a few minutes at a time, but also because, in my anger at God, I don’t want to. Over the past couple days, I’ve tried to be honest with God about how I feel and how frustrated I am about this itchiness that won’t go away, but it’s been so hard! Here are a couple of the scriptures that gave me hope:

Psalm 62:1 (MSG)God, the one and only---I'll wait as long as he says. Everything I need comes from him, so why not? He's solid rock under my feet, breathing room for my soul, An impregnable castle: I'm set for life.

Psalm 61:2-3 (AMP)From the end of the earth will I cry to You, when my heart is overwhelmed and fainting; lead me to the rock that is higher than I yes, a rock that is too high for me. For You have been a shelter and a refuge for me, a strong tower against the adversary.

So there it is. No answers or funny stories, just me letting you know how much I’m struggling at the moment. I greatly appreciate those of you who are praying and having faith for me, even when I lack faith for myself.

Room Service at LPCH??

About six months or so ago, Stanford and LPCH announced they were revamping their food service system. A couple months ago, that system went into effect, and last week when I was admitted for a skin infection, I had the opportunity to experience the new food service for the first time. I’m pleased to inform you that the quality and variety of the food has improved, though the system has some definite flaws.

The new dining service is called “At Your Request” and is being advertised as “room service” for patients. Next thing you know, they’ll be selling empty beds on Priceline and expecting us to tip the nurses. But on a serious note, the new system is (in theory) pretty cool. You can order meals by calling the food service number anytime between the hours of 7 am and 8 pm, and the food selection is significantly expanded. Some new and improved menu choices? The Asian stir fry, deli sandwiches (with avocado!), chicken enchiladas, whole wheat penne with pesto, and flat iron steak, to name a few.

Sounds like a dream, right? Well, there are more than a few downsides. First and most importantly, the ordering process is extremely vague, and the rules and limitations of the system seem to vary depending on who you talk to. Another downside is that it takes approximately an hour to receive your food, and a couple times it took about an hour and a half. So basically, if the thought even crosses your mind that you might possibly be the slightest bit hungry within the next two hours, order immediately. Kinda like those girls who plan their wedding before they have a boyfriend (if you don’t know what I’m talking about, watch an episode of “Say Yes to the Dress” on TLC).

Being the frugal, crafty person that I am, I decided that if they were going to design and implement a vague system, I was going to test the boundaries of that system. In other words, order vast quantities of food. Hey, it’s not my fault the menu fails to list the maximum number of items a patient can order. The first night of my hospital stay, Zack was with me as usual and my dad was coming to visit, so I ordered the following: green salad, flat iron steak, shrimp stir fry, brown rice, whole wheat penne with pesto and grilled chicken, green beans, a baked potato with sour cream and butter, angel food cake, custard, Sun Chips, gummy bears, two cranberry juices, and a grape juice. We thoroughly enjoyed (and, might I add, finished) our feast and prepared to do the same the next night.

But before any of you start scheduling surgeries and faking illnesses in order to save a few bucks on groceries (in this economy, who could blame you?), I’m sad to report that Stanford quickly wised up to those of us manipulating the system. On the third day of my stay, the woman who took my order wouldn’t even let me order a baked potato with my hot dog and steak, citing the lame excuse of there not being “enough room on the tray.” Most people would give up at this point, but not me. I literally negotiated with the woman for 10 minutes before she finally agreed to send me a half-order of the rosemary roasted potatoes instead. They were delicious :).

Conspiracy Theory

During my most recent hospital admission, I became convinced that my nurses were scheming against me. This theory began taking shape in my mind after I started IV antibiotics, which, unfortunately, almost always cause diarrhea. Sorry if this is TMI, but my sense of privacy is a little dull after being in the hospital. Privacy in a hospital is like snow in San Jose...not gonna happen. When I began experiencing this aforementioned side effect, I dutifully reported it to my nurses, informing them that I no longer needed the Colace (stool softener) they had been bringing me to counteract the possible constipation caused by my pain meds (seem complicated? Try balancing the side effects of over 20 medications, which is what I’ve been on for the past 8 months). So imagine my surprise when I find the little red Colace pill in my next round of meds! Assuming the nurse forgot or made a careless oversight, I removed the pill and casually reminded her that I definitely didn’t need to "soften my stool" while having diarrhea.

The next day, I was quickly glancing through the vast array of pills I was to take with breakfast when I noticed not one, but TWO Colace pills in my medicine cup! I wasn’t sure whether to be appalled or suspicious, but my mom and I laughed it off, joking about what would have happened had I not caught the nurse’s mistake (definitely TMI). I reminded the nurse again that, having diarrhea, it probably wouldn’t be prudent for me to take the Colace, and she agreed. If the problem had stopped there, I would’ve written it off as one of the small mistakes that are bound to happen in the hospital, especially with a medication list as extensive and complicated as mine. But the Colace continued to show up in my med cup at least TWICE A DAY until my discharge, all while I was reporting daily my ongoing issues with the dreaded D word.

So my conspiracy theory is this: apparently I’m so much fun that the nurses will stoop to pretty low-down, underhanded methods to keep me in-patient. Come on, guys. If you want to hang out, just ask me, but please stop trying to secretly slip me laxatives. That’s just not cool.

It Could Be Lupus...

I used to laugh along with everyone else who watches the popular TV series “House” whenever Dr. House's minions once again suggested lupus as the possible diagnosis for a patient’s varied and puzzling symptoms. I laughed because, in the show at least, lupus never turned out to be the underlying condition, but more importantly because few House fans, including myself, or few people for that matter, know enough about lupus to understand the devastating, lifelong impact that diagnosis can have on a person’s life. That is, until I began developing my own set of random and complex symptoms last year and witnessed firsthand the casual tone and frequency with which doctors suggest serious conditions such as lupus as possible explanations for a patient’s (in this case, my own) issues.

Last week during my latest hospital admission, one doctor from rheumatology came to see me after being consulted to aid in the diagnosis of my puzzling symptoms. Though I appreciated the time she took to read my complicated medical history before seeing me, she began to “think out loud,” tossing around serious autoimmune diseases, such as lupus and rheumatoid arthritis, as possible explanations for my symptoms and musing that although I didn’t fit some of the criteria, I fit others  and it would be worth repeating certain tests and analysis to rule them out. Because I’ve heard this kind of thing so many times from so many doctors (every team/department seems determined to find a disease I have that fits within their area of expertise), her words didn’t affect me as much as they would have last year or even several months ago, but I still felt rather upset.

My advice to doctors in her situation is simple: if you don’t have anything helpful or conclusive to say to a patient, don’t say anything at all. Thinking out loud and mentioning serious, life-altering diseases without any concrete proof only serves to heighten a patient’s anxiety in an already unpleasant and challenging situation. Whether we’re discussing lupus or some other medical condition, my request to medical professionals is this: either rule out lupus or come to me with some cold, hard facts that point to it before you use that word again in my presence. I’m not bitter; I just believe that sometimes doctors need to take a step back from the technical side of their job and reacquaint themselves with their patients’ feelings and experience. Believe me, we can tell the difference between those who do and those who don’t.

Medical Jeopardy

As some of you know, I was discharged from the hospital this afternoon after being admitted last Sunday for severe ankle and elbow pain. Random, I know, but I wouldn’t be true to myself if I didn’t give the doctors something to puzzle over. Admitting me is like playing a round of Medical Jeopardy, with all the teams competing to see who can figure me out the fastest. This time the teams included oncology, stem cell, orthopedics, infectious diseases, and rheumatology, each of which visited me daily and asked me the same questions over and over. Their favorite question, which they asked repeatedly, was if I had experienced any trauma to the affected areas. I had to bite my tongue to stop myself from responding, “Come to think of it, doctor, I did close the car door on my ankle earlier today; do you think that could be causing this pain?” After repeating once again that I had never injured either my elbow or my ankle, one doctor actually had the nerve to ask, “Never, ever?” Did she really think my answer was going to change because she added “ever” to the question? And shouldn’t that worry her if it did?

Fortunately, the doctors were eventually able to diagnose the cause of my pain and treat it, so I’m doing much better. The pain in my left elbow has been persistent but tolerable for the past several weeks but suddenly grew much worse on Sunday, and the pain and redness in my right ankle appeared randomly Saturday night and by Sunday evening was excruciating to the point that I couldn’t walk or move. The pain and redness in my ankle, which spread to various other areas of my body within a few hours of my being admitted, turned out to be a skin infection and got better almost immediately after I started IV antibiotics. The elbow pain is from AVN, or avascular necrosis, which is bone death caused by poor blood supply to the area and commonly occurs from long-term steroid use. Another reason we hate steroids :(. I’m still dealing with some unexplained itching, but I’m glad to be home and hopeful it will go away soon.

Flu Shots for All!

If you haven’t already heard, it’s that time again, and by “that time,” of course I mean flu season. We all know what that means: flu shots. I don’t actually see how it would be possible to remain ignorant of the impending flu season if you’re a functioning member of society. If you’ve visited a grocery or drugstore, driven on the freeway, or even turned on a TV in the past several weeks, you’ve no doubt been bombarded by commercials and signs screaming “Get your flu shots here!” and “10% off your entire purchase with a flu shot!” Really? If I wasn’t already planning to get one, saving $2 on my groceries won’t suddenly compel me to pay $30 to have someone stick me with a needle, but who am I to question marketing strategies?

But seriously, flu shots are important, and though I won’t be getting one, my doctor recently informed me that everyone I’m in close contact with should (i.e. family, close friends, the students I tutor, or anyone else whose cough or sneeze would send germy particles flying in my direction). I want to clarify that I won’t be getting one because it would be pointless, not because I’m a wimp. When it comes to getting shots, I’m a professional. Giving yourself five to six shots a day for the past six months will do that to you. A flu shot would be pointless, however, because my bone marrow isn’t yet strong enough to create antibodies against the flu in response to the vaccine, which is the whole reason to get it in the first place. Because I’m highly immuno-compromised and living without the protection of the flu shot, I need to take whatever steps possible to ensure that I remain flu-free, including making sure I’m not around anyone who might have it.

I’ve slowly been notifying my family, friends, and students of their need to get flu shots, though luckily, they’re all in the segment of the population recommended to get one anyway. Truth is, unless you’re a forty-year-old hermit living in the Appalachian mountains, you’re probably in the “high-risk” category. To quote WebMD, “an annual flu shot is recommended for anyone who wants to reduce his or her chances of getting the flu” (http://www.webmd.com/cold-and-flu/flu-guide/fact-sheet-vaccines). Is it just me, or could they just say the flu shot is recommended for everyone? Are there actually people who would like to increase their chances of getting the flu? I’m picturing a man turning to his wife: “Well, dear, I haven’t gotten the flu in a few years. I think it’s time to remedy the situation.”

So take my advice. Get your flu shot. And if you want to take your chances and go without, don’t be offended if I don’t return your calls until June. Just kidding. Sort of.

Need a Laugh?

When I was in eighth grade, my junior high instituted a daily practice of “SSR,” or Silent Sustained Reading. Being an avid reader and a huge advocate for children reading as much as possible, I also instituted this policy during my first year of teaching, except that I ingeniously thought to call it "DIRT," for Daily Independent Reading Time. Unfortunately, this acronym only served to confuse everyone and garner loads of questions for a nervous first-year teacher (picture concerned parents on Back to School Night asking, "So what's 'DIRT'??" after reading over their student's schedule). Oh, well. At least my students liked the name.
During my eighth grade year, this fifteen-minute period took place immediately after lunch and was a welcome break from the strenuous academic demands placed on me throughout the rest of the school day. For me, SSR was right before geometry, and let’s just say I needed the downtime to be able to endure that class. Books and magazines were always available to students who did not bring reading material, and I frequently chose to read old issues of Reader’s Digest because their stories are short enough to read and enjoy in fifteen minutes, and they always include several sections of jokes and humorous anecdotes.
Though I have fond memories of my Reader’s Digest days, I probably haven’t read one since. Well, friends, I’ve been missing out. I was recently notified that I had frequent flyer miles that were about to expire, and the only items worth purchasing with them were magazines, one of which was my old pal Reader’s Digest. The magazine is still filled with short, interesting stories and humorous quotes, jokes, and anecdotes, a few of which I’d like to share to brighten your day :).

Struck a chord with me and reminded me of Job 2:8-10 (below)...
“If I don’t ask ‘Why me?’ after my victories, I cannot ask ‘Why me?’ after my setbacks and disasters.”
-Arthur Ashe

⁸Then Job sat on the ash-heap to show his sorrow. And while he was scraping his sores with a broken piece of pottery, ⁹his wife asked, "Why do you still trust God? Why don't you curse him and die?"
¹⁰Job replied, "Don't talk like a fool! If we accept blessings from God, we must accept trouble as well." In all that happened, Job never once said anything against God.


Totally agree...
“Have you ever noticed that when people use the expression ‘I have to say,’ what follows usually needn’t be said?”
-Richard Russo, writer

Describes me perfectly...well, except the money part...
“People always ask me if I come from money. I actually come from coupons.”
-Wendy Liebman, comic

Just made me laugh...
“I think my goldfish has seizures,” a man tells the veterinarian.
“He seems fine now,” says the vet.
“Now, sure. But wait till I take him out of the bowl.”

Bizarrely funny...
Only two people in the entire world still speak the ancient language of Ayapaneco. Luckily, they live in the same small town in Mexico. Sadly, they’re not talking to each other. The reason, says a linguist: “They don’t have a lot in common.”
-Source: Guardian (England)

Marriage, a.k.a. “Mawwage”

To use an oft-quoted line from one of my favorite movies, “Mawwage is what bwings us together today.” Zack told me not to write a post about him, but I’m pretty sure he just didn’t want you all to know how awesome he is. Sorry, babe.

I unbiasedly would like to point out that I have the best husband in the world. And we totally have our issues. Especially with all that we’ve gone through in the past year and a half, the silent treatment (him), yelling (me), nagging, arguing, and insensitivity, to name a few, are no strangers in our house. Are you kidding me?!? Acting like you’ve got it all together in marriage, whatever the heck that means, is so over-rated. You never fight? Sure, I believe you. But I also believe you’re going to explode one day and I pity the man or woman who’s around to clean up that mess. Let’s all stop trying to pretend we’re perfect and we’d be a whole lot happier and healthier.

Speaking from the perspective of being married all of two-and-a-half years, a drop in the bucket compared to people like my grandparents, and from watching and learning from couples I respect and want to imitate, one of the most important things you can do in a healthy marriage is simply to be open.
1 John 1:7 NCV "But if we live in the light, as God is in the light, we can share fellowship with each other. Then the blood of Jesus, God's Son, cleanses us from every sin." 
Put all your dirty laundry out there, to your spouse and to others. It’s not easy, but it’s helped us immensely, and I hope we never stop working at it.

I’ve also learned how important it is to look for and acknowledge your husband’s strengths rather than always harping on his weaknesses, problems, mistakes, and, let’s face it ladies, ways he’s not like you. Though I take that back: have I really learned it if I keep having to be knocked over the head with it week after week? Maybe it would be more accurate to say I’m learn-ing.

With that said, Zack is encouraging, fun to be around, joyful, honest, affectionate, eager to help, patient, forgiving of people’s faults, hard-working, and passionate. Most importantly, he loves God and he loves me, even though I'm often *surprisingly* difficult to love. Does he always exude these characteristics? No way. He gets sad, angry, and beat down by life, just like any of us. But I’ve watched him grow in tremendous ways over the past year and a half. Having your wife almost die, get diagnosed with a rare, life-threatening disease, and then receive a bone marrow transplant will tend to do that to a person.

Yet his decision to grow was not inevitable. There are times in life when God gives us a choice between misery and peace, between bitterness and trusting him. Have you looked around lately? Many people choose the former.
Zack chose the latter, and in the words of Robert Frost, that has made all the difference.

Bureaucratic Baloney

LPCH is a fantastic hospital, and I’m deeply grateful that I receive my treatment there. However, as is bound to happen to any large, multi-million dollar organization, they sometimes implement excessively complicated/ridiculous administrative procedures, of which I was recently an unlucky recipient.

Yesterday I had one of my typical twice-weekly bloodwork and doctor’s appointments at the clinic, but I also requested an X-ray of my back as follow-up on a previous scan. My back has been bothering me more lately and I wanted to make sure the compression fractures had not progressed. X-rays generally have the shortest wait-time of any medical procedure, so I handed the orders to the radiology receptionist a little before 11 am, hoping to be out within half an hour. Thirty minutes later, a surprisingly long wait for an X-ray, I was called back, but instead of proceeding straight to my X-ray as usual, I was informed that I needed to complete a urine pregnancy test. The results of this “new mandatory procedure,” required before any girl over the age of 9 (yes, NINE) can get an X-ray, would take 30-45 minutes. When I asked why I wasn’t informed of this new procedure and given the urine test upon my arrival to minimize wait-time, I was met with a blank stare, as if this was a bizarre concept. Frustrated, I agreed to wait. What else could I do?

An hour later, with my back beginning to ache from all the sitting, I asked the receptionist if the results of my test were back, which of course she knew nothing about. They weren’t.

Thirty minutes later (it’s 1 pm now and I left my doctor’s appointment at 10:45 am), I checked again, and after calling the lab, the receptionist told me the results would be back in 10 minutes. Growing more frustrated and uncomfortable by the minute, I asked the receptionist why I wasn’t given the test upon my arrival and was told that “maybe they didn’t know what kind of X-ray I needed.” That’s funny, because I read the order before delivering it to them and it clearly stated which type of X-rays were being ordered. Sigh.

Thirty minutes later, at 1:30 pm, I was so frustrated I wanted to cry. The X-ray technician came out and apologized, telling me the lab was processing my results right then and that they planned to submit an incident report. Between being at the hospital hours longer than I expected and having to sit in uncomfortable chairs that cause a lot of back pain, which was the whole reason I was getting the X-rays in the first place, I couldn’t help it; as I sat down, I started to cry. On the one hand, it’s good I had my mask on because people probably couldn’t tell I was crying, but on the other hand, it gets pretty muggy in there real quick. Let’s just say that thing needed a thorough cleaning afterwards. At 2 pm, after waiting for over 3 hours, my X-rays were finally done. To his credit, the X-ray technician was very kind and apologized profusely, and I know it’s not his fault.

Besides the fact that it’s therapeutic for me to write all this down and let it go rather than stew inside me, leading to who knows what kind of nuclear meltdown, I maintain a shred of hope that someone with some influence on these misguided administrative hospital procedures will read this blog and will somehow effect change on the system...

I can’t help it. I’m a dreamer.

My (Unpaid) Job

Many of you know I recently returned to tutoring part-time (SAT, writing, and reading comprehension at the moment), and I'm enjoying working again and teaching, even if it’s not in a classroom setting for the time being. But did you also know that I’ve been working full-time in none other than the healthcare industry? Every day I complete a huge range of health-related tasks, including but not limited to refilling and picking up prescriptions, setting up and driving to doctor’s appointments, reporting symptoms, double-checking medication dosing, measuring and administering medication, changing caps, changing dressings, ordering and organizing medical supplies, confirming home pharmacy deliveries, checking blood sugar and blood pressure, engaging in physical therapy, reading insurance plan information, verifying insurance claims, and managing an HSA.

The most comprehensive term for my position would probably be “personal healthcare manager.” Unfortunately, this position is unpaid because, as you may have guessed, it’s for myself. Though I continually wish I had someone to manage this daunting list of daily health-related tasks for me, I’m grateful that I: 1) have an amazing husband who is my partner in all this and helps me as much as possible; 2) have a mother who is extremely adept at many of these tasks and has taught me both verbally and through her example how to perform them without losing my mind; 3) have health insurance; and last but certainly not least, 4) speak English. Seriously. Imagine trying to do all the things I listed above with a translator (if you’re lucky).

So for now, I guess you could say I’m working over-time. But I’m hopeful that sometime in the near future, I’ll be down to one full-time job, definitely NOT in the healthcare industry :).