Rehab Redefined

I don’t know if anyone else is like me, but I had never heard of “rehab” until about a year ago, when my grandma went to rehab after suffering a nasty fall. I thought rehab was a euphemism for a temporary nursing home, since my grandma is in her early 80s. So when my UCSF care manager encouraged me to consider going to rehab rather than straight home from the hospital, I was kind of insulted. I can’t explain why I changed my mind, except to say that God intervened because once again, he knew what was best for me far more than I did. Little did I know that going to rehab would be the best thing I could do to advance my recovery.

If you, too, are unfamiliar with rehab, let me clear things up for you. Rehab bears little resemblance to a hospital, let alone to a nursing home. All rehab facilities and nursing homes provide a different experience for the patient depending on the level of support needed, so I received much less help than others at my rehab facility, and I’m sure that some people receive less help at nursing homes as well. But at my rehab facility, we walk to and from the gym for 6-7 daily sessions of intense physical and occupational therapy, walk to all meals at the dining hall, bathe ourselves daily, and ask for help rather than expect it. My experience of spending 5 days in rehab strengthened me and made me ready for home.

Without rehab, I could have survived at home while struggling to perform daily tasks, but the constant difficulties would have taken away the enjoyment of being home. With rehab, I was prepared for these challenges and could focus on gaining strength and being with family rather than struggling to dress myself and use the bathroom. I’m already planning to go to the same facility after my bilateral knee replacement, which will be sometime within the next couple years.

Now that I’ve extolled the benefits of rehab, I feel free to take the next few posts to expose its strange moments and quirky staff :).

Pros, Cons, and Outrageous Moments at UCSF

I have been chomping at the bit to write a blog post these past 11 days since my surgery. There’s nothing like a hospital stay to provide me with plenty of new material, since the truth is, I lack both the time and energy to explain to my friends and even family all that goes on in just one day at the hospital. To help me keep track of the most important, appalling, or comedic events, I wrote notes in a journal kept beside my bed. Many of these notes were written during the middle of the night under heavy sedation, so more than once I flipped through my notebook in the morning with no idea what the symbols scribbled on the page were supposed to mean. Despite that setback, I was able to gather enough anecdotes to form several cohesive blogs, so here is #1: Pros, Cons, and Outrageous Moments at UCSF.

As a result of being on oral Dilaudid and Oxycodone every 2 hours in addition to intravenous Dilaudid every 10 minutes, my memory of UCSF, which includes the first 4.5 days of my hospital experience, is quite hazy. Good thing I have my notes!

Pros:
1) Towels: rather than use these to sand down a refinished table, as I would with other hospital towels, I would use these in my bathroom at home!
2) Food: though I barely ate it, Zack preferred the content of my food trays over the food others offered to bring him from local restaurants! When I mentioned that I didn’t have much of an appetite, one of my nurses offered to make me a milkshake!
3) Dry shampoo: I don’t understand how it doesn’t weigh your hair down since you don’t wash it out, but it doesn’t! I kind of want to use it after recovery...

Cons:
1) HUGE wait-time after pushing the call button: by the time a nurse answered my call, I frequently forgot why I called, especially when I was taking Valium.
2) As a secondary downside to this wait-time, I couldn’t go to the bathroom until they came to the room. They would give me 2 Liters of fluid and then expect me to hold it for 10 minutes! Not possible.
3) Lack of communication among staff: the first thing I was told by my doctors and nurses after surgery was that I have 3 hip precautions for the next 3 months: 1) Don’t cross your legs, 2) Don’t turn your feet inward, and 3) Don’t bend your hip beyond a 90 degree angle. Three days after my hip surgery, as the X-ray tech was arranging my legs, she told me to cross my right leg over my left while sliding in my left knee and bending up to reach it at a 45 degree angle. What?!?

Outrageous (and/or funny):
1) The first night, I asked for my scheduled dose of Actigall, a medicine necessary to help my hurting liver. My nurse informed me that I was not ordered for Actigall, and when I questioned this, believing it to be a mistake since I talked to the doctor about it earlier, the nurse said, “Well if the doctor didn’t order it, you must not need it.” Right, because doctors never make mistakes.
2) After I got back from the horrible X-ray, I needed pain medicine but wasn’t due for it yet. Since they offered me no options, I inquired about a massage therapy department. The nurse looked at me inquisitively and repeated, “Massage therapy? What’s that?” Hiding my disbelief and desire to demand if I was really at UCSF, I explained that massage therapy is a department of massage therapists who can provide massage to relieve pain. She responded, “Oh, that would be in the volunteer department.” Really?? Do you want a volunteer rubbing their hands all over you?
3) The day of my surgery, after we got back to my room, I asked Zack to bend down as I held up my finger. Hesitantly, he agreed and lowered down. I held up my finger, wrapped in the oxygen saturation monitor and giving off a red glow, to his nose and announced, “You’re Rudolph.” I have no memory of this incident.

The Bionic Woman

I haven’t written on this blog for quite awhile, and there’s far too much to catch up on, so I’ll just start with what’s going on now. I’m a mess. Over the past 6 months, I’ve discovered that I have osteonecrosis, a disease causing bone to collapse, in both my knees, my right wrist, AND both my hips, and the pain in my hips has progressed to the point that I am having bilateral (i.e. both) hip replacement next week. Yes, at only 27 years old, I will be the bionic woman.

Yesterday, we were watching Raising Hope, and Burt was describing to Virginia why he fell in love with her in high school even when she was in a back brace.
Burt: “I knew you were out of my league.”
Virginia: “I was not, I was in a back brace!”
Burt: “That was a bonus! It was like you were hot and bionic!”

Zack and I turned to each other, and I gave him a smirk and was like, “Ohhh yeahhhh.” Raising Hope may now be my favorite show.

And that's not the only positive reference to bionic women in today's media. Ever wondered what inspired the popular song "Titanium" by David Guetta? Take a look at some of the lyrics:

"You shoot me down, but I won't fall
I am titanium"

"I am titanium"? Seriously? What else could this line be referring to but my new hips?

I appreciate finding the humor in my situation, but the truth is that the path to becoming the bionic woman has its downsides. Last month my doctor put a cast on my right wrist to ease the pain, and I started using a walker to get around at home and at work. After school, while using my walker to get outside to wait for my students’ parents to pick them up, I had two parents come up to me and ask about my car accident. I had no idea what they were talking about until one of them cast a sheepish glance at my cast and walker.

Though the pain is constant and at times, mind-numbing, the amazing thing is the love people have shown me through this experience. Parents at my school have brought me meals because it’s hard for me to shop and cook. Friends have arranged plans around my limitations so I can be involved. The valet in front of my doctor’s office yesterday ran to get a wheelchair for me when he saw I was having a hard time getting out of my car. In all these expressions of kindness and compassion, I see God’s love for me.

1 John 4:12 NCV
12 No one has ever seen God, but if we love each other, God lives in us, and his love is made perfect in us.

Saying Goodbye to Moses

A few weeks ago, I thought that around this time I’d be writing a blog post about the joys and challenges of owning a dog. Instead, I’m writing about the difficulties of giving one up.

We’ve been wanting and looking for a dog for a long time, visiting the Humane Society, perusing dog books, and checking out the various breeds whenever we visit Carmel (a.k.a. Dog Paradise). We attended a Dog Adoption Day at the Humane Society a few weeks ago and encountered a small, friendly, fox-like dog named Elvis. Finally, the search was over. Within two days, he was ours, with our first order of business being to change his name to Moses. Similar enough to Elvis for him to recognize the sound, and different enough to eliminate all possible references to the King.

I fell in love immediately. Never having owned a dog before, I was amazed by his constant companionship and unconditional affection. I was also overwhelmed by the amount of time and energy he required. A dog (even more so a puppy) is a lot of work for anyone, let alone two people simultaneously recovering from a massive health crisis, returning to full-time work, and transitioning back to school. Within a week, we knew it was too much.

As we gathered Moses’s toys to bring back to his foster home, we cried at the thought of losing such a happy little guy. Even though we only had him for a week, we already bonded with and cared deeply for him, and it was so painful to admit that we just weren’t ready to give him the time and attention he needs. Saying goodbye to Moses led to the deeper realization that we are still recovering from the trauma of the past couple years, and we are not yet ready to take on an additional challenge beyond those we are already facing. Saying goodbye to Moses meant choosing God, our marriage, and our health above our other desires. As much as I’d like to own a dog right now, especially Moses, I’m just not ready for that yet.

I know Moses will find a great home though...with a face and personality like that, someone is bound to fall in love with him as quickly and easily as we did, and hopefully this time it will be a perfect fit.

The Pros and Cons of Looking Good

Based on that title, you probably think I’m getting a little full of myself, but let me explain. I’ve looked “sick” in various ways for the past 2+ years. Since 2010, my weight has fluctuated from 85 to 130 lbs., my hair has fallen out three times, my skin has displayed a range of colors, from blotchy red to pasty white, and I’ve sported a face mask that suggests I’m either a serial killer or preparing for impending nuclear disaster. I’ve been confined to my apartment for months, in and out of the hospital more times than I care to count, and on kidney dialysis.

Compared to all that, I now look pretty good. The upside of this is that the standard has never been lower. Who else is told she looks “fantastic” just because she has hair? I’m greeted by exclamations of, “You’ve gained weight!” as if I just won the lottery, and I keep having to fight the urge to retort, “You’re looking rather chubby yourself!” and remind myself that’s a good thing.

When I stop and think about it, I’ve come such a long way over the past couple years. The other day while I was taking a walk, I remembered the months that I either wasn’t allowed outside or didn’t have the strength or energy to walk more than half a block. However, I still have some serious challenges, some physical but mainly emotional, as a result of my disease and bone marrow transplant. I think people have seen me looking sick for so long that now, because from a physical standpoint I look and feel so much better, they assume I’m great!

On my bad days, I dread going to the doctor or seeing people I haven’t seen in a while because I don’t want to hear the constant repetition of, “You look so good!” You’d think I’d be flattered to hear that I look good, and sometimes I am, but in reality that assertion often makes me feel pressure to reassure people that I’m doing well for their own peace of mind. What if I told you about my depression, fears about the future, or hip pain from a steroid-related condition unknown to almost everyone? Would that let you down? I can also feel misunderstood when told I look good, because my appearance often doesn’t correlate with how I feel. When you look good, people think you feel good, and so they don’t understand when you can’t do “normal” things or handle as many responsibilities.

With all that said, I am grateful that I’ve come so far, a concept that I’m still trying to grasp. I also appreciate when people compliment me, because I know they see dramatic changes in me that represent growth and new beginnings. I want to feel as good as I look, but it’s taking me time to get there.

Crazy Hair

I guess I should be grateful that I now have enough hair to experience a bad hair day, but I’m not. Instead, I stare in disbelief at the stubborn tendril that curls over my left ear, defying gravity and maximum hold hair gel. My bangs (i.e. hair not yet long enough to tuck behind my ears) fall across my forehead in a way I like to (not so) affectionately refer to as “The Swoop.” I experiment with parting my hair on the left side, then on the right. I waste precious moments of the day untucking and retucking my sideburns behind my ears, wondering all the while if girls are even supposed to have sideburns. Caught in that awkward stage of trying to grow my hair out while not looking like an overgrown sheepdog in the process, I long for the day when my bangs are long enough to pin back without giving me a receding hairline.

I know, you think I’m exaggerating. But what you see is the result of many minutes (okay, hours) of patting, twisting, pulling, scrunching, and combing. Zack, however, gets to see the real deal. My morning hairstyles are his source of constant amusement. My hair has its good days and bad days, and half the time I look in the mirror and think, "What the heck am I going to do with you?" Sounds like a metaphor for my life.

Yet for all its untamed craziness, my regrown hair (and the fact that my face no longer looks like an overinflated balloon) has stopped people from staring at me and assuming I’m sick. Now I can go in a grocery store without little kids pointing at me and asking their parents, “Why doesn’t that girl have hair?” I can join the ranks of other women who chopped off their locks and lament with them about the awkwardness of growing them back, without sharing that I lost my hair from chemo, not by choice.

I’m sure I’ll have a moment next week or even tomorrow when I hate my hair, but today, I think it’s pretty cute.

Not So Irrational Fears

I think everyone experiences the occasional moment of feeling a bump on your toe and thinking it’s terminal cancer, or of having a case of intestinal upset and imagining you have a thirty-foot-long tapeworm (it happens-I saw it in an episode of House). But the truth is, those situations are extremely rare, so rare that we acknowledge those thoughts are most likely completely irrational and untrue. But what about when you’ve been in that 1 in a million situation not just once, but many times? What do you do when the “irrational” thoughts you pushed aside because they were just that, irrational, turned out to be true? How do you handle those thoughts in the future?

My fears are not usually constant, but they are extreme. When most people develop a side cramp, they think dehydration. I think liver failure, because that was the cause of my sudden debilitating side cramp two years ago. When most people feel an ache in their hip, they think it’s a temporary problem caused by sleeping on the wrong side of the bed or sitting for too long. I suspect mine is a permanent problem caused by long-term steroid use and alleviated only by pain medication and hip replacement.

This morning I went to the bathroom after waking up and noticed that my urine was a slightly darker color than usual, and a wave of fearful thoughts swept over me. But I’m doing so well! Why is this happening?? I can’t face it if something else is wrong with me! I have to face the fact that what are irrational fears for most people are very real possibilities for me. But I need to also acknowledge the facts that I can often ignore, such as the fact that, with the exception of my achy bones and occasional fatigue, I am feeling quite well almost all the time. I’m faced with the issue of how to acknowledge the reality of these fears without letting them overwhelm and control me.

As I prayed about these fears this morning, I reflected on many people in the Bible who also had these fears that proved to be quite rational considering their circumstances. They didn’t gain comfort from telling themselves that these things wouldn’t happen; they gained comfort from their belief that God would stand by their side through these possible challenges and give them the strength to endure. David was one of these people, and here are two psalms that he wrote:

Psalm 46:1-3 NIV
God is our refuge and strength,
   an ever-present help in trouble.
Therefore we will not fear, though the earth give way
   and the mountains fall into the heart of the sea,
though its waters roar and foam
   and the mountains quake with their surging.

Psalm 27:3-4 CEV

Armies may surround me,

   but I won’t be afraid;

   war may break out,

   but I will trust you.

I ask only one thing, Lord:

Let me live in your house

   every day of my life

   to see how wonderful you are

   and to pray in your temple.

Spring Cleaning

I’ve always wondered at the expression “spring cleaning.” Why spring? Why not winter cleaning, when you’re stuck inside anyway, or summer cleaning, when your kids are out of school and can be paid to do manual labor at minimal cost? Regardless of the origin of the expression, I found it to be true these past couple weeks as Zack and I undertook the task of deep cleaning our apartment.

Step 1 was accumulating a vast array of things that could be sold at a yard sale. This task involved roaming throughout the apartment, opening drawers, sorting through clothes, digging in closets, and searching under the bed for any and all objects that we don’t use or need. We ended up with a row of paper bags lining our bedroom wall that took up most of Zack’s side of the room. Zack was patient enough to put up with this for a couple weeks while we waited for the approaching yard sale. As luck would have it, I found a whole new treasure trove of things to sell after the yard sale, resulting in another line of paper bags and another yard sale this coming Saturday.*

Step 2 was initiated after I came across some information, both online and from friends, suggesting that many of the ingredients in the cleaning and cosmetic products I use are harmful to my body. I’ve heard bits and pieces of this stuff over the years, but going through a bone marrow transplant and all the related treatments and medications tends to make you take a second look at what you’re putting in and around your body. I figure I’ve done enough inevitable damage (through chemo, steroids, etc.); why choose to do more than I have to? I won’t go into all that I learned here, and I certainly don’t claim to have any expertise in this area, but I did find a few basic ingredients in almost all of my cosmetic and cleaning supplies that have been identified as carcinogens, hormone disrupters, or toxic chemicals.

At first I felt totally overwhelmed. While taking a shower one day last week, I imagined the theme music from Hitchcock’s Psycho as I stared around me in horror at all the products that contained these potentially hazardous chemicals. Everything from the shampoo to the sunscreen, from the body wash to the makeup. And the worst part is that the stress caused to my body by the newfound knowledge of these chemicals wreaks even more havoc on my system than the chemicals themselves!

The good news is that it’s actually much easier than one might think to replace harmful products with safe ones, and most of these replacement products are not only affordable but are also much better for the environment. Guess it makes sense that what’s safer for our bodies is also safer for our planet, right? Again, I don’t claim to be an expert in this area, and I’m still shopping at Safeway, but I figure that these basic choices Zack and I are making to eliminate as many harmful chemicals as possible from our lives can only do us good.


*The great thing is that we’re having the yard sale with friends from church, and all of our proceeds will go to our church’s annual Special Contribution, the majority of which funds the hiring of staff to work with our youth ministries. I first studied the Bible and became interested in God as a teenager, so I am deeply indebted to those people who sacrifice their time (and sanity) to work with youth, act as inspiring, positive examples, and teach them about God.

Never a Dull Moment

In America we’re all about excitement, standing out, and being unique or extraordinary. One doesn’t usually wish one’s life to be dull, boring, or uneventful, or to be perceived as ordinary or average. There have been countless times over the past two years of my life, however, in which I wished for nothing more. When I was first admitted to the hospital for my then undiagnosed and extremely rare immune disorder, teams of doctors visited me every day for five weeks before they finally pinpointed the cause of my sickness. Almost every day, after being stumped yet again by my array of symptoms, one or more doctors would teasingly tell me I was “special,” as if this was an original statement. It drove me crazy.

Another one of these times was my last hospital admission two weeks ago, which I didn’t bother to mention to most people because, let’s face it, lately I’ve been admitted to the hospital about as often as I’ve filled up on gas. The day I was admitted, I arrived in the day hospital for a routine infusion of IVIG, a blood product meant to boost my antibodies and therefore my immune defense. I came by myself for the two-hour infusion, since I’ve received IVIG at least 40 times over the past year and a half and expected nothing out of the ordinary (there’s that word again). My nurse was training someone that day, so she decided to follow protocol and hook me up to the cardiac monitor, which they usually never do. I took Benadryl and Tylenol before the infusion to prevent any possible allergic reaction, and then quickly fell asleep.

About two-thirds of the way through the infusion, I woke up to go to the bathroom and felt a little crummy. I know my body well enough now to know when something is wrong, though I can’t always put my finger on it. As soon as I got back to bed from the bathroom, I plugged myself back into the cardiac monitor, which immediately started beeping. The machine has several levels of warning, which correlate the different beeping pitches and frequencies. The first is, “You’re a little anxious or sleeping too soundly.” The second is, “Something’s wrong,” and the third is “GET THE PADDLES!”  I paged the nurse, muttered, “I’m going to pass out” as she entered the room, and then proceeded to feel my brain go to mush as the machine blasted its third and final warning level. During that moment, my heart rate actually dropped to 0, but luckily it rose quickly enough that they didn’t have to resuscitate me. I returned to consciousness to hear “CODE BLUE” being announced over the hospital PA system and saw a team of about 20-25 people rush into my room, shouting things at me and each other as they tore off my socks, checked my pulse, and started pumping me with fluids and hydrocortisone. Within 5 minutes, I was rushed to the ICU.

Not to worry; I was fine after about an hour since that chaos was simply caused by a severe allergic reaction to IVIG, which, thank God, I’ll never receive again. But protocol required that I be monitored overnight in the ICU, bringing me to hospital admission #3 in less than a month. I was pretty angry about the whole thing, but I’m grateful that it wasn’t anything more serious. I realized how God was protecting me by having the nurse decide to hook me up to the cardiac monitor. Even though no one was there with me, I wasn’t alone.

Isaiah 43:1-3 MSG
Don't be afraid, I've redeemed you.
  I've called your name. You're mine.
When you're in over your head, I'll be there with you.
  When you're in rough waters, you will not go down.
When you're between a rock and a hard place,
  it won't be a dead end—
Because I am God, your personal God,
  The Holy of Israel, your Savior.

Another Hospital Stay

I would’ve written earlier but I only recently regained use of my right elbow. I realize that statement leaves one desiring some context or background information, so let me explain.

I was admitted to the hospital for the second time in less than 3 weeks last Monday night (technically Tuesday morning, since I was admitted at 4:30 am, but that’s another story/blog post). Since my Hickman was removed during my last hospital stay (awesome), I had to get a regular IV for my IV antibiotics and fluid during this hospital stay (not awesome). In an attempt to avoid the bruising that resulted from the IV placed in my forearm during my last hospital stay, I requested this IV be placed at my elbow (medical people have some technical name for this location that I’ve never cared enough to learn). The IV placement actually went fairly well for me, meaning that it took only 3 nurses and 4 attempts, but the IV rendered the bending of my right elbow nearly impossible, making dressing, brushing my teeth, eating, and typing rather difficult. Add that to being seriously sleep-deprived, and blog-posting was not at the top of my list.

The reason I was sleep-deprived is that I arrived at the ER on Monday evening around 6:45 pm and wasn’t admitted to 1 North until 4:30 am, as I mentioned earlier. For the first 2 of those 9.5 hours in the ER, I was in immense pain, for the first 3, I had a fever, and for the entire time, my systolic blood pressure was under 100 (mostly running in the 80s/30s). Needless to say, I was thoroughly exhausted by the time I reached my hospital room, but procedure dictates that once the patient arrives, he or she must be thoroughly interrogated (for lack of a better word, but rather fitting at 4:30 am) regarding timing and dosage of medications, reason for coming to the ER, and pain level. I underwent this interrogation in addition to a complete medical examination by a handful of nurses and doctors, each of whom must have believed that his or her stethoscope yielded a unique result, since each insisted on pressing it all over my chest and back as I took deep breaths. By the time the entire process was over, it was about 7 am, and I was beyond cranky. Zack and I were able to catch a few hours of sleep between 7 and 11 am Tuesday morning, but we were physically and emotionally wiped out.

Tuesday night around 10 pm, I was looking forward to a much better night sleep when I was informed by my nurse that I had 3 upcoming blood draws. In the middle of the night. Since my IV wasn’t giving any blood return, these blood draws would have to be peripheral needle pokes. Let me repeat: in the middle of the night. I threw a mini-fit, cried a little, and then resigned myself to the facts. Shockingly, I endured the 3 blood draws, at 12 am, 1:30 am, and 3 am, with a dressing change thrown in at 2 am, each of which took about 20-30 minutes and consisted of nurses turning on all the lights and speaking at a volume better suited for a concert than a hospital room, without throwing anything or hitting anyone. Amazingly, I was even fairly alert on Wednesday and enjoyed visits from several friends.

Every hospital stay is difficult; no matter how many times I’ve been in this situation, it doesn’t get easier. But I’m grateful to be back home and back to my normal routine. Here’s to hoping the next one will be MUCH longer than 3 weeks away.

Yoga

I woke up today feeling like my limbs had been torn from my body. Every muscle hurt, even ones I didn’t know I had, like those along the sides of my neck or behind my knees. The reason? Yoga.

Last week I decided to kick my own butt and get a gym membership, partly because I’m much more motivated to exercise when someone else is walking me through it, partly because I’m too self-conscious to quit mid-workout when I’m in a room full of people, and mostly because I’m so cheap that if I pay for it, I know I’ll force myself to use it. I used my membership for the first time yesterday when I attended a morning yoga class at 24 hour fitness. I had to pray about my fears and insecurities on the way to the gym because it’s been over two years since I did any form of exercise besides walking outside of the comfort and privacy of my own home. I’ve lifted 3 lbs. weights and Hula-hooped to the Wii Fit from time to time, but actually taking a class with other capable, motivated, healthy people watching was a whole different thing. I prayed to focus on the victory of my simply attending the class, regardless of how many moves I was able to complete or how my body or abilities compared to those of others in the class. In fact, I prayed to not even think about others’ abilities, but just to focus on enjoying my time and relishing the progress I’ve made and the beginning of a new step in my journey.

Luckily, my friend attended the class with me, so I wasn’t alone in laying out my mat and nervously waiting for the limber instructor to begin the workout. And boy, was she limber. I swear she moved her body in ways I didn’t think were possible. When she arched her back and held her feet behind her in a “boat pose,” I stared in awe. When she then proceeded to roll from side to side, I almost burst out laughing. But although I couldn’t perform all of the moves perfectly (or even partially at times), I still felt a sense of satisfaction and victory after the class. And though I walked around today like an eighty-year-old woman, I’m looking forward to attending class tomorrow :).

Day 365

It took me three tries to write this blog post. The first time, I wrote a paragraph and saved it on Blogger, planning to finish it soon. But when I accessed my draft, all my writing had disappeared. Frustrated, I wrote the entire post only to have my browser crash before I saved the last paragraph. Long story short, my writing disappeared again and I ended up in tears. Funny how writing this blog post makes a pretty good metaphor for what my life feels like at times, trying to do something good and being knocked down again and again, having to start from scratch. I’d like to feel pretty sorry for myself, but I can’t help remembering these two scriptures:

Psalm 34:19 NLT
The righteous person faces many troubles,
     but the LORD comes to the rescue each time.

Proverbs 24:16 NIRV
Even if godly people fall down seven times, they always get up.
     But those who are evil are brought down by trouble.

Wednesday, February 22 marked the one year anniversary, otherwise known as my second birthday, re-birthday, or birtheration (birthday + celebration), of my bone marrow transplant. I'm a few days later than planned with this post because the day after my birtheration, I wound up in the very place I was exactly one year prior, the hospital. A pretty serious line infection sent me to the ER Thursday afternoon with teeth-chattering chills, plummeting blood pressure, and a fever, and I was quickly started on a course of IV antibiotics and admitted to the hospital.

I'm not gonna lie; spending the week of my one year anniversary in the hospital was/is (I'm still here) a pretty big discouragement. It felt like a failure to wind up in the very place I'm supposed to be celebrating NOT being, and canceling my birtheration party was just icing on the cake. But I know that doesn't change the fact that one year is a huge milestone, especially considering that I'm doing so well. Besides this recent line infection, which was entirely unrelated to my health and completely related to a foreign object being embedded under my skin with caps hanging out and touching who knows what, my health is better than it's been in the past two years. My body is stronger, my labs are almost normal, and my skin is clear (no signs of GVHD).

My line was removed this morning, so now I’m infection and catheter-free and plan to stay that way. My biggest worry now is when to reschedule my birtheration. This hospital stay definitely knocked me down, but I plan to get back up. No line infection is going to stand in the way of me celebrating another year of life, challenging as it was, with the people who helped make it possible.

Birthday Reflections

It was my 27th birthday on Thursday and I finally feel like an adult. Maybe it’s because I’ve now been married for 3 years, have a retirement account, and just received the invitation to my 5 year college reunion. Or perhaps I’ve actually been an adult for some time but have been so preoccupied with other things that it hasn’t hit me until now. Considering this is the first birthday in 3 years that I celebrated outside of the hospital, the latter seems most likely.

While redeeming the coupon for my free birthday drink from Starbucks this morning, I was reminded of last year’s birthday coupon, which I received while in the hospital for my bone marrow transplant. By the time I could visit Starbucks in person, about 4 months had elapsed since my birthday and my coupon had long since expired. Luckily, people tend to bend the rules when they hear you’ve had a bone marrow transplant :).

This birthday was different in so many ways from the past two years. I was able to go out to a restaurant rather than eat hospital food, eat a cake baked by a friend rather than one delivered on my hospital tray, receive gifts that weren’t pre-sterilized to prevent infection, and be given fresh flowers. Most importantly, I celebrated another year of life that, without a bone marrow transplant, may not have been possible.

Jeremiah 1:5 GWT
Before I formed you in the womb,
     I knew you.
  Before you were born,
     I set you apart for my holy purpose.

Psalm 139:13-16 NCV
13 You made my whole being;
   you formed me in my mother's body.
14 I praise you because you made me in an amazing and wonderful way.
   What you have done is wonderful.
   I know this very well.
15 You saw my bones being formed
   as I took shape in my mother's body.
When I was put together there,
16 you saw my body as it was formed.
All the days planned for me
   were written in your book
   before I was one day old.

These scriptures give me hope that I was created for a purpose, and that my birth and my life are special to God. I often get frustrated about many areas of my life that are still restricted or different from how they were or how I’d like them to be, but believing that God already knows what lies ahead for me helps to give me a sense of peace.

Paradoxes

Life is full of them. Or my life, that is. As I've been recovering and feeling much better overall from week to week, I've been facing some unexpected challenges. In a sense, as my life is getting easier, it's getting harder.

There are many things I couldn't do for so long, either because I was told not to by my doctors or because I didn't feel well enough, such as cooking, working, and exercising. While I couldn't do those things, I wished I could; however, now that I can, I often wish I didn't have to! There are also certain activities that I'm still told not to participate in, such as cleaning and classroom teaching. In the past, these are activities I would have welcomed a break from, but now that I can't do them, I wish I could!

The equally strange aspect to these paradoxes is that I know the feelings won't last. As soon as I'm given the green light to clean, I'll long for the days when I was told not to. Anywhere from days to months after returning to teaching, I'll wonder what I was thinking going back to teaching obstinate, hormonal middle schoolers. Yet even though I know the feeling of gratitude for simple things like walking outside, doing laundry, and running errands (all former no-nos) may be short-lived, I still get a sense of happiness from being able to do them. Luckily, the middle schoolers aren't always obstinate ;).

Extreme Couponing

I love saving money. It’s in my blood. I’m pretty sure the show Extreme Couponing is inspired by my mom, since one of the top ten lessons I learned while growing up was to never buy anything without a coupon. Other money-saving convictions I was indoctrinated with at an early age include to never order any drink but water at a restaurant, never buy anything at full price, stock up on staples when they’re on sale, buy an annual Entertainment book (or similar coupon book), and keep a well-stocked freezer.

My husband Zack is pretty much the opposite. It’s not that he doesn’t like saving money (who’s going to argue, “I’d like to spend more on groceries” or “I don’t think our credit card bill is high enough this month”?), but it’s not something he naturally thinks about. He tends to value quality over saving money, which I found out very quickly on our honeymoon when we stayed at the Four Seasons and the Tickle Pink Inn in Carmel, both places that I’m pretty sure cost more than a kidney.

It took me a long time to see the value in his way of thinking, but these past two years have really opened my eyes. Many times he pays more because he values the experience over the money, something that doesn’t come naturally for me. If I care deeply about something, I should be willing to spend more on it, whether that be in money, time, effort, or all of the above. During the past two years, I’ve seen firsthand that God, relationships, and health are the most important things in my life, and they’re worth protecting at any cost.

Mark 6:19-21 NLT
“Don’t store up treasures here on earth, where moths eat them and rust destroys them, and where thieves break in and steal. 20 Store your treasures in heaven, where moths and rust cannot destroy, and thieves do not break in and steal. 21 Wherever your treasure is, there the desires of your heart will also be.

Fortunately, it’s not all or nothing. We can learn from each other’s way of thinking so that we get the best of both worlds. Zack has learned that you don’t have to spend a week’s salary on a hotel room for it to be luxurious, and I’ve learned that I won’t die from ordering a soda at dinner. Don’t get me wrong; I still love saving money, and I think that’s a good thing. But we’re still going to stay in Carmel; I think I have a coupon.

Trying to Gain Weight

I realize that's the exact opposite of everything we’re hearing this time of year, with commercials advertising cleanse diets and weight loss pills (scary) and with magazine headlines screaming, “Drop 10 Pounds Instantly!” (not a good idea either). But that’s where I’m at. Admittedly, for the typical person it’s much easier to gain weight than to lose it, but add nausea and diarrhea to the picture (either that, or a teenage boy’s metabolism), and you have a different story.

With my defunct sense of taste and medication-induced nausea, it’s been difficult to think of anything that sounds remotely appetizing, let alone to then eat it. However, every so often, I’ll get a flash of inspiration such as Vietnamese chicken pho (a big hit) or Taco Bell nachos (my worst idea yet). Last week I had a craving for an icy fruit smoothie which, with the help of my Magic Bullet, proved to be successful. Though I was grateful to consume anything without experiencing nausea, the average smoothie isn’t exactly formulated to bulk you up, so I decided to explore some calorie-adding techniques.

My doctor referred me to the clinic’s nutritionist, a woman with an (in)famous reputation amongst the patients, probably because almost all of us experience some level of nausea and don’t want someone telling us what our BMI is when all we can think about is trying not to throw up our breakfast. She is, however, a great resource for a patient actively trying to gain weight, and sent me home with a bag full of different supplements to try in my smoothies. I think I just entered the world of body builders and marathon runners.

Did you know that there’s an 8 oz. “breakfast drink” on the market made by Carnation that contains an outrageous 560 calories?? I’m pretty sure an 8 oz. tube of lard doesn’t even pack that much of a punch. I don’t understand how something made entirely of ingredients such as sugar, hydrolyzed vegetable protein, and oil is somehow good for you, but I do understand how it might help you to gain weight. If nothing else, at least it’s got some vitamins added in there. How ironic would that be if I suffered a heart attack while drinking a “nutritional supplement”? Wish me luck.

Kidney Reflections

Lately my kidneys have taken a hit due to dehydration, causing my Creatinine and BUN to rise. What the heck are Creatinine and BUN, you may ask? Your average person has probably never heard of them, so let me give you a brief anatomy lesson, courtesy of Wikipedia. Creatinine is a break-down product of creatine phosphate in muscle and is usually produced at a fairly constant rate by the body. Creatinine is chiefly filtered out of the blood by the kidneys, so if the filtering of the kidneys is deficient, creatinine blood levels rise. The blood urea nitrogen (BUN) is a test of the measure of the amount of nitrogen in the blood in the form of urea and a measurement of kidney function. Urea is a by-product from metabolism of proteins by the liver and is removed from the blood by the kidneys. Basically, all this means is that I have to run IV hydration at home for a few days to rehydrate myself and help my kidneys.

Today I was reflecting on all the ups and downs my kidneys have had over the past 2 years, with last July being the worst. That was when my HLH relapsed and my kidneys completely shut down within a matter of days. I stopped peeing entirely, an extremely strange phenomenon. You might think it sounds convenient (e.g. no more bathroom breaks during movies), but it was actually a very uncomfortable, awful feeling to sit on the toilet and literally have NOTHING come out, no matter how much I drank.

As a result, the renal team (i.e. kidney doctors) severely restricted my intake of fluids, allowing me to drink no more than 500-700 ml (about 1-1.5 water bottles) per day, with every drop accounted for on a whiteboard mounted on my bathroom door. I was constantly thirsty. I’ve never been much of a fan of alcohol, but man, did those beer commercials look good. My dreams were filled with tall glasses of ice water and frosty smoothies. I had to undergo kidney dialysis, a process I associated with weak, sickly, old people, never myself at 25 years old. Though the failure of my kidneys was sudden and severe, they recovered amazingly fast, allowing me to end dialysis within two weeks, rather than the two months or more originally predicted. That was just one of many miracles I experienced last year.

Yeah, the hydration causes me to make a couple more daily trips to the bathroom than usual. I’ll take that over dialysis any day.

Christmas in the ER

At 3 a.m. Christmas morning, I woke up with a severe case of nausea that quickly turned to vomiting and other unpleasantries. I will spare you the gruesome details, but the long story short is that around the time we were supposed to be leaving for my parents’ house to enjoy a hearty breakfast and open presents, Zack and my bedraggled self were on our way to the Stanford ER. I was so wiped out that I could barely open my eyes, let alone answer and endure the nauseatingly repetitive questions and processes associated with ER visits: “So, what brought you to the ER today?” “What time did the nausea begin?” “How many bowel movements have you had in the past 24 hours? What do they look like?” In the ER they have no shame. My favorite was, “Let me examine you,” which involved firmly pressing on my stomach, always a good idea for someone complaining of incessant nausea, vomiting, and abdominal pain.

Seven hours, two liters of fluid, and one IV dose of Zofran (an anti-nausea med) later, I was discharged under the assumption that my symptoms were likely due to food poisoning.  I was still able to go home to my family and relatives and enjoy Christmas dinner (though mine was Top Ramen) and the present-unwrapping experience (I sat in the recliner while all my gifts were brought to me). My sister proclaimed that the day had gone from the worst Christmas ever to the best Christmas ever, and we all agreed and looked forward to an uneventful rest of the week.

Little did we know that my symptoms were not from food poisoning, but from a viral infection. This soon became apparent when 6 out of 7 of the rest of my family members woke up in the middle of the night with the exact same symptoms. Let’s just say the bathroom was a popular spot that night. Everyone spent the next day fairly miserable, watching movies and shuddering at the sight or smell of food. Everyone, that is, except my dad, who came home announcing he still didn’t feel well and then promptly asked, “Do we have any Doritos?” He has a strong stomach.

Zack and I still aren’t feeling very well, and I had to go back to the ER a couple days later for persistent symptoms and dehydration. It’s difficult not to feel resentful and bitter about the whole situation, especially since all this happened during Christmas while my sister and relatives were visiting from Seattle and Wyoming, but I’m still grateful we got to spend time together. We kept praying that I wouldn’t have to be admitted, and I wasn’t. Though it may take a little time, I’m sure this Christmas will be one of those we remember and laugh about for years to come. I foresee plenty of vomiting jokes.