The Skinny on Susan

Life is a series of two steps forward and one step back. Or, in my case, two pounds forward, ten pounds back.

In my last post, I wrote about my ongoing struggle to gain weight and my visit to a nutritionist. I was alarmed today when I stepped on the scales at the City of Hope and discovered that I've gone from an underweight 112 to a skeletal 105 pounds. At this poundage, I have to be careful on the dance floor; my sharp, protruding hip bones could be lethal weapons.

Of course, this weight loss follows a week of symptoms that resembled a stomach flu. But I suspect that there's something more going on. For weeks, I've felt an uncomfortable feeling of fullness. And my body seems to have trouble absorbing nutrients A few weeks ago I learned that my Vitamin D levels were at an alarmingly low 9.5, when 30 is low normal. I'm also Vitamin C deficient, which is strange since I make a steady diet of the lemons, oranges and grapefruit from our back yard.

I know I've written before about seeing a GI specialist, and I've finally scheduled an appointment for September 7. I'm eager to get to the bottom of this. (No pun intended.)

Missing in Action

Yes, it's been a while since I've posted. Friends often ask me why I haven't updated more often, and I tell them it's boring to post (and read), "I'm sick with a cold."

I recently realized that I've been sick almost continuously since early December. Back-to-back flus followed by back-to-back-to-back colds with a short bout of pneumonia thrown in for good measure. Every time I think, "I'm back," my temperature spikes to 101 - my body's signal that I have another cold coming on.

I think I'm at the tail end of a cold and am enjoying the surge in energy and the chance to finally work on "rebuilding."

Speaking of rebuilding, I saw a medical doctor/nutritionist about gaining weight. The mere act of keeping a daily diet diary has made me realize that I really don't eat enough to maintain my weight, let alone pack on a few pounds. (There, I said it.) And the reason I don't eat enough is that I almost always feel uncomfortably full, like I'm going to explode. I don't think this is normal.

Otherwise, life is good. I've enjoyed watching the guest house and the baby grow. The house will soon be complete, but baby Joseph will keep on growing (a bittersweet realization).

If you're interested in a new way of brewing coffee, check out Open Mouth, Insert Fork.

If You Can't Find It, Make It - Crab Fried Rice

When my favorite Thai restaurant closed a few years ago, I searched in vain for a crab fried rice that was good as Nana's. Turns out I didn't have to go far to find it.

Go to Open Mouth, Insert Fork to learn how to make Thai crab fried rice - a dish where the crisp flavors of fish sauce, lime juice and ginger complement the subtlety of the crab.

A Trio of Good News

My PT scans were clean.

My EOS are under control.

I got to hang out with my friend Nancy, who also had appointments at City of Hope.

Lifelong and Long Life

It's easy to forget that I'm a "lifer" patient at the City of Hope. But on Tuesday, I'll have several reminders of my forever Hope status.

I'll start off the day with a shot of "Vitamin P," the notorious drug that Michael Jackson mainlined on a daily basis. Unlike the King of Pop, my propofol will be administered by a licensed anesthesioligist in a clinical setting. I'll fall to sleep right before my doctor jabs my rear with a thick needle to extract bone marrow for my annual bone marrow biopsy. And then I'll wake up 15 minutes later, feeling as thought I slept for ten straight hours. I can't wait!

Then I'll spend the next two hours wandering the campus for a mammogram and a bone density scan. (My choice of the word "wandering" is because of my nonexistant sense of direction.) I know it's probably a "business" decision for CoH to encourage patients to come to them for these services, but it's also convenient for me and a comfort to have all of my medical records in one place.

And, finally, I'll meet with Dr. Forman to discuss the results of the PT scan I had last week. The scan will confirm if I'm still in remission or if I've relapsed. Strangely enough, I'm not feeling the usual funny little "is she or isn't she" butterflies. I think it's because my non-patient life has been creating so many flutters that I can no longer tell the difference. I'll also find out if my pesky eosinophils (aka EOS) are behaving themselves.

It will be a long day, but, truth be told, I don't mind being a "lifelong patient," as long as that means that I'll have a nice, long life.

By popular demand: The little man in my life. I love to make him laugh.

Bouncing Back and Berries

After months of nearly non-stop sickies, I finally turned the corner a couple of weeks ago. Nothing serious or even EOS-related - just enough to slow productivity and squelch the appetite. But the first thing to return after I've physically bounced back is a healthy preoccupation with food.

My current obsession is strawberries; I can't seem to get enough of them. You can take a peek at my latest strawberry creations at Open Mouth, Insert Fork.

The Three Cs: Cancer, Chemo and Colds

Which of these doesn't belong in the group?

After being diagnosed with an advanced stage of cancer and undergoing some of the harshest chemo known to man, I would think that I would now sneeze in the face of colds. Only wimps complain about colds, right?

Wrong. After catching yet another cold four weeks ago, I've been tired, sluggish and grumpy. An active day is followed by a day of recuperation. And it seems that I no sooner recover from a cold or flu that I've caught another bug.

During my visit at City of Hope yesterday, I told my doctor that I now catch colds and flus more easily (I've had two bouts of the flu and two colds since December, with sick days outnumbering well days 5 to 1), that I'm knocked down harder and that it takes me longer to get back up again. He believes that my immune system was battered by the post-stem-cell-transplant maintenance Rituxan that I took every quarter for nearly two years. We cut short the last infusion because he suspected that my immune system was taking a hit.

"It's one of the things that we doctors often debate," he said. The efficacy of Rituxan for keeping patients in remission is uncertain. But the pummelling of the immune system with some patients on Rituxan is certain.

If someone had come to me with these facts before the decision to go with the maintenance Rituxan, I doubt that my decision would be different. I figured only a fool would pass on a chance for a longer remission because of a fear of sniffles.

But as I reach for one more Kleenex and cover one more cough, I'm beginning to wonder.