Update from Longbeach....

Jeff asked me to post this update....Hang on for the ride :-)

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Dear family and friends,

It’s been an emotionally arduous and physically irritating week (or so) since our last update. By “irritating,” I do mean “annoying” (but also “painful”), and by “arduous,” I do mean “arduous,” as well as “very complicated.” Having clarified exactly nothing, I will now try my best to explain.

The physical stuff is the easiest stuff to chronicle. About eight days ago, Amy’s seemingly smooth recovery from surgery hit a speed bump when she suffered a mild seizure in our home after a delicious if greasy pizza parlor lunch. (I doubt the pie was to blame—one half “Primo” pepperoni and black olive, one half “Maui Zowie”-style Canadian bacon and pineapple; all freakin’ yummy!)

Many of you have asked, “What do you mean when you say, ‘Amy had a seizure?’” The answer I typically give is this: Remember that TV show “The Incredible Hulk,” when Bruce Banner would grab his head and his eyes would turn green and his clothes would split and rip as his body transformed from reedy geek to rippling mass of radioactive muscle? Well, Amy’s seizures are nothing like that. What happened in this case was that the muscles in her face began to spasm and a feeling of nausea overwhelmed her. When the twitching ceased, a portion of her face was paralyzed and her speech was slurred and scrambled. Over a period of 20 minutes, everything went back online, except her energy; the whole business left her pretty wiped out. In short, a seizure for Amy is like being really drunk, minus any of the fun. (Not that we know anything of being drunk. Make sure you emphasize that point to our grandparents and spiritual advisors. You might be lying, of course, but surely it wouldn’t be the first time, no?)

When we called our doctor, he told us that seizures such as this are within parameters and to be expected. But her medications were adjusted, and since then, Amy hasn’t had any seizures. But her week of “My body is not my friend” weirdness had just begun.

As many of you know, this was the week in which we were to meet with the chemo and radiation docs to plan her treatments. Here’s what we learned:

First, the tumor mass that was extracted from her brain was deemed a Grade 3, which is “10 million times better than a Grade 4,” according to one of our physicians. If it had been Grade 4, Amy would be facing certain death, most likely within a year. To be clear, Grade 3 isn’t all party balloons and kazoos, either—but it’s treatable, and ambiguous enough to contain cause for hope, and therefore a reason to celebrate.

Second, there’s the mysterious matter of how much cancer crud still resides within Amy’s noggin. Last week, I told you that we were dealing with a small amount of tumor (which was left in the brain because of its it delicate location) and bunch of “spider legs,” or vine-like threads from which new tumors can grow. This description remains accurate enough to be called “accurate,” but it doesn’t quite capture the tricky totality of Amy’s actual condition. This past Monday, we were shown the MRI of Amy’s brain that was taken after her surgery. What it reveals is that technically, anything that can be officially labeled “a tumor” has been removed. However, the region of the brain from which the tumor was removed remains saturated with cancer cells. On the MRI, it looks like a bank of puffy white fog. To remove the affected tissue via surgery would have meant scooping out chunks of functional brain, which would have done “damage” to Amy. It could have left her mute, or paralyzed, or worse. The hope is that with radiation and chemo, we can obliterate those cells, or at least neutralize them. In fact, according to our doctor, if that foggy region never grows any bigger, and never yields any additional tumor tissue, Amy will be here for a very long time. However, we are praying that the foggy region will disappear altogether by the time we have another MRI 6 weeks from now. THAT will be a miracle that we can all pray for.

Third, some specifics about the chemo and the radiation. The chemo treatments will take the form of a pill. One a day, every day, for about six weeks. No side effects are expected. The chemo is very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very expensive—and our insurance will cover it. Whew. Amy’s chemo pill popping will begin the same day as the radiation treatments: 2/26/07. Amy requires 30 sessions of radiation—five per week, each session lasting just 10-15 minutes. The experience is akin to getting an X-ray. She’ll feel nothing, but she’ll feel pretty wiped afterward, and over time, there could be some hair loss and irritated skin in the area on her head that’s being treated. The hardest part of the radiation may actually be the commute—it’s a 70 mile round trip. We have been blessed with many offers of transportation and babysitting, and we are very grateful.

Okay. That was a lot of information. So let’s take a break for a second. Grab some popcorn, stretch your legs, take a leak—do what you gotta do, because there’s more to come.

INTERMISSION! (Cue the chipper music.)

(Don’t need to pee? Check out “scary cats” at youtube.com--or read the latest wildly entertaining yet utterly incomprehensible Lost theory by Doc Jensen at ew.com!)

Okay. We’re back. Now let’s talk about why Amy looks and feels like she rolled around in a thicket of poison ivy after a wild night of screwdrivers and smores at that outdoor fondue dive we like in South Central.

This past Friday, Amy woke up from a nap covered in itchy hives. By the next day, her face and lips were swollen and her throat had constricted. By Sunday night, her ears were inflamed and her gums were so sore it was painful to eat. She began applying lotions and taking Benadryl, but to no avail. The doctors told her that most likely, she was having an allergic reaction to her medication—but which medication? Suspicion fell on the Codeine, but in the end, the villain was revealed to be her anti-seizure medication. (Poor falsely accused prescription painkillers!) Yesterday, Amy was put on steroids to help accelerate the healing process. Please pray for immediate relief; physically and emotionally, this allergic reaction has been a royal pain for Amy. We want it taken away. Immediately.

Concurrent with the evolving experience and understanding of her physical ordeal, Amy has wrestling with the emotional aspect of her illness, as well. Last week, prior to learning the details of the pathology report on her tumor, she decided to do some Internet research and learned that people with Grade 4 tumors usually don’t survive past 13 months—and that’s AFTER surgery and chemo/radiation. For the first time, Amy began to wrap her mind around what was at stake, and it left her profoundly shaken. It was a great relief to learn she was only dealing with a Grade 3 situation, and even more heartening to hear that she’s an ideal candidate for successful treatment (her age, her strength of recovery from the surgery, the physical properties of the tumor itself). Nonetheless, Grade 3 cancer cells are formidable in their own right. Combined with the dispiriting, discouraging experience of this allergic reaction, Amy has been feeling quite low the past week. Sometimes, she feels death is imminent. Other times, she finds herself worrying over the thought of our children growing up without a mother. Of course, my inclination is to try everything I can to pull her out of those dark places, and to remind her that she has so many reasons to be optimistic about living a long, healthy life. And so I do, and I am right inasmuch as she really does have reason to be optimistic. At the same time, her fears and the experience of her fears are legitimate, and should be respected. This is scary stuff. There’s just no getting around it. And if we’re not acknowledging that, we are not preparing ourselves properly for the fight to come. Know thy enemy—then kick him in the nuts. That’s what I say.

We remain faithful. We are hopeful. We believe God is good, even though sometimes, we find ourselves taking Him aside and saying, “Dude: what the hell?!” Then he gives us a hug. HUGE hugs. These hugs come in the form of meals brought to our homes by friends. Offers of babysitting and hang-out time. Phone calls and emails filled with wisdom and counsel from family and friends. Letters from people we don’t even know, who’ve heard of our situation and were moved to share their own survival stories. And of course, the scores of checks for millions of dollars from anonymous donors that have allowed us to endure all our suffering from the comfort of our new 25,000 square foot mansion in Malibu. Okay, that last part hasn’t happened. But the truth is, everything that’s been done for us—this wonderful windfall of blessing—has left us feeling so very secure, at a time when security is so very needed. We thank God for his goodness—and we thank God for all of you.

Please know something else: this isn’t all about us. We know that what has happened to Amy has deeply affected many of you. We know this, even if we don’t always acknowledge it, and in the days and weeks to come, we want to hear more about your own experience of all this. Please: share. We want to hear it. We want to know about it. We want to love you all as you have loved us, and are loving us.

Anyway… that’s all for now. Please know that I will never again write an update this long, unless such length is actually warranted. Clearly, what’s needed is shorter, more frequent updates instead of occasional, exhaustive, and exhausting epics. So I’ll trying harder and not trying so hard next time. J

Love you all.
Jeff and Amy