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.