change of plans: my bone marrow took the vacation, not me ::::
My bone marrow: I’m baaaack!
Me: Hey! Finally. You know, you’re kind of important, you know, for LIFE.
My bone marrow: Yeah, sorry about that. I kind of got blindsided in a dark alley.
Me: You don’t know who did this either. We’re still wondering, too….
Instead of a much anticipated vacation in Hawaii, I spent most of my allotted vacation time in the hospital, being admitted for pancytopenia, fevers, and feeling overall terrible. I spent the week leading up to this point still working my last week of my contract (until we revamp my duties, as planned) with strange cyclic fevers that would abate with Tylenol or Ibuprofen, extreme tiredness (what mother isn’t tired?), and myalgias. I waved it off at first. It’s just a virus, I thought. I’m holding out until vacation.
As there was some improvement by the middle of the week, I thought I was on the upswing. My menstrual cycle caused the back aches. I had a good night’s sleep. Then the fevers were back, teeth-chattering chills taking over my body, fever spiking to 104 degrees again. My muscle aches worsened. I could barely walk across the parking lot to my car. I made an appointment with my doctor on my day off, the day before vacation started.
“I’m a bit puzzled by the labs,” the doctor said, calling me Friday night just before dinner as we sat in the parking lot at the daycare to pick up the kids. “Your WBCs are low at 1.1 and your platelets are low at 89. It could be a viral infection. We need to get your labs rechecked in a few days. No sick contacts before then.” she explained.
“But our vacation,” I reminded her. And sick contacts? Who was she kidding, with two young children in daycare? I have sick contacts all the time.
After I handed the phone to Eat to discuss the lab results, as my brain was fading, and we discussed the logistics, we decided the best plan would be we’d pick up the kids, Eat would feed them dinner, and I’d drive myself to the Emergency Room for a more complete workup. I didn’t pep up too much, despite knowing we could still be going to Hawaii the next day, my subconscious nudging reality into my consciousness that I was really sick. The trip would be cancelled. And I would have to stay in the hospital.
Chest x-ray was normal. Labs showed the same pancytopenia, hemoglobin low normal indicating that my RBCs weren’t being made properly either. Basically, my bone marrow stopped working. My urine was orange. My liver enzymes were elevated, showing some non-specific hepatitis. We waited for a couple of hours in the busy ED waiting room with the Stanford Women’s Rugby team and an apparent dislocated shoulder, a few unhappy children pulled into the waiting room in wagons, then clinging to mothers, and a smattering of elderly people with wrinkled, bony arms, tear-stained eyes, and greasy hearing aids.
I was placed in an isolation room, seeing as I could get septic with my apparent immunocompromise. The kids tucked away at home with emergent babysitters, Eat and I waited. I finally got to the Oncology floor at 2AM, after being shuffled to another holding space, receiving an abdominal ultrasound (which only showed some mild splenomegaly), and having patchy sleep in between.
The next four days were spent with bringing down fevers with Tylenol and ice packs, being stuck numerous times by the phlebotomists and seeing the slow trend of my blood cells climbing back to normal, and observing if the light, lacy, reticular rash on my unshaven legs developed into something more impressive.
I attempted to stay awake to watch movies in my private neutropenia room, but my exhaustion always overtook me. The nurses would whirl in at all hours, perky and swift, leaving me to realize just how badly I wanted to melt into the bed and just how slow my brain was working and my muscles ached. Though slow, I could comprehend the gravity of the situation. Our vacation was cancelled. Eat was managing the kids on his own much of the time, save for my brother when he could help on the weekend. My bone marrow wasn’t working. My bone marrow. I spent Mother’s Day in the hospital, being visited by Peach and Grub, always excited to see me and to delve into the untouched snacks and warm juice cups that lay strewn on my bedside tray tables.
We were banking on the virus causing this mayhem to be parvovirus. But that came back negative. Not Epstein-Barr either. Another variant of parvo? Perhaps. We may never be sure. There are two beneficial outcomes from this event: 1) I will be immune to whatever virus caused the bone marrow to temporarily fizzle; and 2) I need to slow down sometimes, even when I don’t want to.
Besides my forced slow-down and my new-found ability to sleep for most of the day while spiking fevers, another oddity of this whole illness was that I lost my appetite. How could I not be hungry? Me? After a couple of weeks of being fairly disinterested in food just before my diagnosis, and trying to muster courage enough to eat the tasteless hospital food, I gained my ability to enjoy various flavors and cuisines a day after I got back from the hospital. Maybe it was the appalling leathery beets that I ordered from the hospital menu that turned me back. Or maybe the neighbor’s donated meal of rosemary-lemon tri-tip with sweet zucchini that shook my taste buds back to reality.
Now that I am almost 100%, save for being a little slower and having a few more luscious naps than I normally take, my quest for food and flavor has returned. Save for the burgeoning pile of recipes and the overstock of food from my mother-in-law, I have started to dabble back into some recipe testing. Why not start with comfort food, I thought, and so I enter chawanmushi. This Japanese savory steamed egg custard is dainty yet elegant, light but filling, and my celebration of springtime, being healthy, and of simple and flavorful food. The base of dashi stock, with the fish cakes, mushrooms, and carrots, are ingredients in one version of many a chawanmushi you may encounter (I skipped the gingko nuts and mitsuba). Need to know how to make dashi? Here’s where I made it before, for my wonderful hijiki salad.
I took a much-needed break from the blog from this experience, found my comfort food again, and neglected to make a cake for my wedding anniversary! As of today, Eat and I have been married for 13 years. Since one of his favorite desserts are these rainbow cookies, it was easy to make up for a lack of cake with cakey-like cookies instead.
Be well. Take a break. Don’t let your bone marrow get mugged in its version of a dark alley, culprit still unknown. Enjoy your food, comfort expected in a small ceramic cup or a brightly-colored cookie.
- 2 dried shiitake mushrooms
- 3 tablespoons water
- ½ cup dashi stock*
- 1 inch carrot, sliced into thin rounds (a wide carrot works best)
- 1-2 large eggs (2 eggs make the custard a little more firm in my testing)
- 6 thin slices of Kamaboko (fish cake)
- 1 green onion, chopped thinly on bias
- ½ teaspoon mirin
- scant ½ teaspoon salt
- ¼ teaspoon soy sauce
- 2 tablespoons ikura (optional)
- Special equipment: 2 small (4-6 ounce) heat-safe ceramic bowls
- In a small bowl, combine dried shiitake and water. Allow to soak for 15 minutes or until soft. Cut shiitake thin strips, then dice. Keep the water!
- Pour the shiitake water from #1 into a measuring cup, then fill with dashi stock to make ½ cup of liquid.
- Use small aspic/jelly cutters or Japanese vegetable cutters to cut carrot into flower shapes. Put into bowl filled with water. Cover and microwave for 1 minute to soften.
- Whisk egg in another bowl. Add mirin, salt, soy sauce, and dashi mixture and mix well.
- Strain mixture through a sieve into another bowl.
- Fill pot with water, so that it comes up to cover ½ of your chawanmushi cup. Once water is boiling, reduce the heat to low heat (aim for a gentle simmer).
- Divide all the ingredients into two cups, adding the more colorful ingredients on the top. My carrots promptly sank to the bottom, even after gently pouring the egg mixture over them. (I'll tell you how to fix this in a couple of steps.)
- Once the egg mixture is divided evenly between the cups without creating bubbles, cover cups with foil.
- Gently place each cup into hot water (it shouldn't be boiling) and cover with the pot's lid.
- After about 7-10 minutes, place more carrot flowers on top of each cup, the eggs now firming up and able to withstand the weight of the carrot slice.
- Cook for a total of 15 minutes, then turn heat off and cook for 3 more minutes. Insert a toothpick into the center to check if done. The consistency should be firm but jiggly. Top with green onion and ikura, if using.