Caching Out

This weekend we decided to try something new. I blame the wine from the night before. Dear Husband and I had heard about this cool international venture called "geocaching," and it sounded so much like a big Easter egg hunt that we had to try it. I should mention right here that no jelly beans are involved, which sort of makes it not as good as an Easter egg hunt to me.

Anyway, if you have never heard of geocaching, here's what happens. Someone puts a log bog and some doohickies in a cannister or lockbox or box disguised as a log and hides it. They record the coordinates and post the location on this big bulletin board at geocaching.com, with a few hints. Then people go looking for it, navigating with a GP, and if they find it they put their name in the log book, trade something in the box for something they have, and put the cache back the way they found it for future geocachers. See, it's a sort of international scavenger hunt.

So we thought, "Wow, this is neat! What a great family activity!"

The first cache was at a pharmacy right around the corner from us. All the comments mentioned what an easy find it was - a park and grab - perfect for a first time. Well, we wandered around the parking lot for an hour poking at the grass verges, peeking through the fence, trying to avoid looking like miscreants. Firecracker and I bought candy. It went like this for several more caches. We spent a long time staring in disbelief at a lamp post in front of a church. By the fourth stop DramaQueen had written up a sign and stuck it to the window - "I hate geocaching." We persevered and finally found a tupperware box near a bookstore. Rather DramaQueen fell upon it with a crow of triumph. By that time we didn't really care who saw us. If people wondered why we were dragging a plastic box out from under the shrubbery, they refrained from asking.

I gather that geocaching is particularly popular along hiking paths and such, part of getting out in nature and so forth. Given that the girls think nature should be thoroughly washed and everything "icky" removed from it, I'm not sure they will go for that. They might do it if they could wear gloves and a hazmat suit. I myself felt a bit woozy when I turned over a piece of wood and ants pured out across the grass.

I wonder if anyone has ever found a corpse doing this? I'm waiting for geocaching to turn up on CSI. If it hasn't already.

See that little red line peeking out? Yeah, well we didn't see anything like that.

 

The new gluten-free me

I guess it’s time for me to finally post about this monumental change in my life. It started a month or so ago when my doctor discovered that I was anemic. He sent me to a gastroenterologist to make sure I didn’t have Something Nasty. The Gastro Doc, with the rather charming but disorienting name Dimple, ordered a colonoscopy and an endoscopy. She looked at my iron levels and said, “You must feel like you want to hit someone.” I’m telling you that so you can give me credit for not, in fact, hitting anyone.

I’ll spare the details of these procedures, except to say that magnesium citrate is a baffling concoction that is fizzy, salty and sour all at the same time. I felt like I was drinking a weird Asian beverage. I also never want to see Gatorade or Jell-o again. On the positive side, I love the little cocktail they gave me to put me under. It has the beauty of a narcotic without the hurling afterwards.

My colonoscopy was fine, but the endoscopy revealed some things I wasn’t aware of. Like having acute gastritis, for one. I hadn’t really noticed until they told me. I also had blunted villi, and since Dear Husband has had his own problems, I knew what that likely meant, and indeed the blood tests confirmed that I do in fact have celiac.

I’ll break here for a public service announcement: Celiac is an autoimmune disease that damages the villi of the small intestine and interferes with the absorption of nutrients. It is estimated that 1 out of 133 people have it, and less than 3% of those are actually diagnosed. If you have any digestive issues that have been written off as IBS (like Dear Husband’s were), or if you have any autoimmune disease (my GI said she automatically tests anyone with a thyroid condition), I encourage you to beat some sense into your doctor and get the Celiac Blood Panel.

Strangely, I didn’t have any serious digestive complaints. At least nothing I didn’t brush off as simple indigestion, or a bug, or my period. Dear Husband says that I was always having problems, but they were not the bent-over-in-misery-never-leaving-the-house-again variety. I feel supremely lucky, because I’ve read stories of people who were miserable for 10 even 20 years before they were diagnosed. On the other hand, having no powerful symptoms imbues the experience with a haze of unreality.

The treatment is simple - never eat wheat, rye or barley again, or any product derived from them (such as malt). I’m used to looking for this stuff because of Dear Husband. And I’m lucky that I don’t have multiple food allergies. There are people who can’t eat corn, or milk, or potatoes on top of having to avoid gluten.

But, you know what, most gluten free baked goods totally blow, and they are very, very expensive. I’m going to have to figure out baking my own stuff (which involves strange flour mixes and something called xanthum gum that costs $11 for a bag the size of an oatmeal packet). In practice I approach all gluten free goodies with distrust and suspicion. For God’s sake, people are baking with bean flour! Bean flour! In cookies! In bread! That’s just what a I want, a lovely garbanzo bean cookie. Make that a vegan, nut free, rice free, corn free, soy free, agave syrup sweetened garbanzo bean cookie. And then there’s the gritty, mouthful of beach sand experience of eating anything baked with rice flour. I just tried using the new gluten free Bisquick to make biscuits, which I’ve actually heard some poor demented folk praise, and I wondered if this was, in truth, food or Evil masquerading as a comestible.

At the moment I’m tired of thinking about food, what to stock, what’s safe, whether I should risk purchasing this $7 loaf of gluten free bread, what the hell I’m going to pack in my lunch, and I’m wondering if I could just live off Corn Chex for a while. Thankfully, ice cream (many kinds, anyway) and jellybeans are gluten free.

Home Again

The moment we got home yesterday, Firecracker was knocking on our neighbor's door, eager to see her playmates. Except for the head full of staples, you would never know doctors had been messing around in her brain. She should be able to go back to school this week, with instructions to keep other kids from touching the incisions. The hospital gave us a set of staple removers, which we are to take with us to the follow up appointment. They look rather scary, and given how many staples I see, I'm a bit nervous about that appointment.

Cough, Cough, Cough

Cold fingers have been playing along my spine today. Firecracker has caught whatever virus I had and is coughing. Her school nurse even called today, asking to use the nebulizer sooner than indicated. Pneumonia, I worry. Pneumonia, pneumonia, pneumonia. We have spent a lot of time with Firecracker in the hospital with pneumonia. So today I have a dark feeling of dread. Isn’t it odd that I find this more sinister than the upcoming brain surgery? I guess it is because I remember how long she was on oxygen after her birth, and how the nurses gave me steroid shots in the hopes of maturing her lungs before I finally gave birth. They only got to inject 2 of 3. Would that third shot have done the trick? Because she was so premature, she has chronic lung disease. That sounds so ugly: chronic lung disease. I prefer the way the pulmonologist termed it: bronchopulmonary dysplasia. There’s nothing to be done about this chronic lung disease. They can’t remove it the way they can remove a tuber from her brain. She’s stuck with it, on top of worrying about whether the tuberous sclerosis will affect her lungs as she gets older and cause LAM--lymphangioleiomyomatosis--which can only be cured with a lung transplant.

I've spent almost 6 years now worrying about Firecracker. Those 2 months in the NICU after her birth were just the start of an endless journey.

Adderall is my friend, I think

I've always thought I was the least likely person to have ADD. After all, I was as far from hyperactive as you can get, and I love to read, and I made it through school with good grades. Sure I drifted aimlessly from day to day and had no idea what to do with myself if I wasn't at work or school. Empty time sure was empty. When I was a kid I hated summer for this reason. I would draw up elaborate schedules, but I could never keep it up. I loved school--so ordered, so rhythmic. It was such a relief to know that I was supposed to be in place B at time A. And schoolwork was easy, as long as I liked my classes, and I usually did. I was bored a lot, but mostly at home.

I don't think I ever owned a calendar, much less a planner. I have no idea how I got through college without missing assignments, exams, whatever. I don't remember having a date book until I was in my 30s and I started a job where they made you take a Franklin Covey seminar. I hate Franklin Covey. I hate his bulky planners and his goal charts and the stupid seminars. But I was sucked into the world of planners. I've carried a lot of them, and written in appointments. Unfortunately, I usually forget to look at them.

My coping mechanisms consisted mostly of letting someone else take care of the important stuff at home and never committing to anything that required a due date. And then along came kids, and suddenly there were doctors and dentists, and then specialists and day care providers and forms and charts and a mountain of bills, statements, applications, laundry, toys, diaper bags, commutes. Now, after seven years of motherhood, I am going to admit that I have lost it and probably never had it. I regularly misplace papers. I forget doctor appointments. Sometimes I show up at appointments on the wrong day. I can start on one project and somehow end up researching the name of that obscure actor in movie x. I've written checks off the wrong account. I can forget what you are saying while you are talking to me, because my mind snagged on one of your words and that reminded me that I have to remember to not forget to pick up the dry-cleaning. I write notes to myself on my hands in Sharpie. I forget to reorder prescriptions before I hit the last pill, at which point I notice that the label says "No More Refills." The flip side is that I can become so obsessed with a project that I don't notice the laundry or the dishes, or how very late it is getting. It seems perfectly reasonable that I can pack three lunches, clean the kitchen, load the dishwasher and finally fold the laundry at eleven pm. Even though I've never been a great homemaker, I've always managed to hold it together at work, but not now. I've always been great at ideas and lousy at follow-through, but now I feel like a gibbering idiot in a cubicle.

Our life only runs smoothly because of Dear Husband. He pays the bills and realizes that if we are going on a trip on the 11th, certain preparations need to start on the 5th. When I hedge, he is decisive. When I dawdle, he keeps me on track.

So, Adderall, let's see what you can do.

Report on the Conference

This past weekend we attended a regional conference on Tuberous Sclerosis. I have information overload. They did drawings for one-on-one meetings with various specialists, and we were able to snag meetings with Firecracker's surgeon-to-be and a geneticist. The genetics are too complicated to think about. Abby's genetics test came back negative for known mutations on the TS genes, but it seems that you can have the mutation in particular tissues (as opposed to the blood they test) and nowhere else, or there may be mutations they don't know about yet. So her labwork is going off to some research center to be mulled over.

They fed us well at the conference. That's more important than people think. We met many nice people, very few of whom had a child diagnosed so late. Some had children with severe autism and developmental disabilities. I met one person who found out she and her sister had it after their children were diagnosed. Dear Husband joked that he was going to Home Depot to buy a blacklight (to look for the characteristic depigmented spots on the skin). We're all very fair, so it's hard to see if we have hypopigmentation.

That's all for now. I'm tired and very sad about it all. DramaQueen is feeling insecure because Firecracker gets so much attention. I feel too tired to be nice to anyone. Someone at work ticked me off royally and I thought how annoying it is that people think I should give a damn.

On a postive note, the director once again passed along some PASTE cds, and he's promised to hand on a Sufjen Stevens CD. Finally I can find out what all the fuss is about.

Adventures in Brain Surgery

Today we met with the head of the epilepsy center at Scottish Rite to hear in person what he had already told us by phone—that he recommends that Firecracker have brain surgery to remove one of the tubers that seems to be the source of much of the seizure activity. He thinks the data show that she will greatly benefit from its removal.

I still can’t get my head around it. Here is a doctor talking in the most matter-of-fact (though friendly) way about opening up my kid’s head and taking something out. Actually, opening up her head TWICE. First to insert a sheet of electrodes to map the problem section and then to do the actual surgery. Poor Firecracker will be stuck in bed with wires coming out of her skull. For a week.

To top everything off, I nicked someone’s bumper in the parking lot. I’m beginning to wonder if I have my own personal demon rushing before me to prepare catastrophes and mishaps.

Well at least I have the season premier of Boston Legal to look forward to.

Nothing that Exciting to Report

I'm so thankful to everyone who has left messages. You guys are great.

I wish I had something coherent to say. Abby's teacher has reported that Abby seems to be having some absence seizures in the morning. She's now at the maximum dosage of Lamictal. Dear Husband has tried many times to get hold of the neurologist in charge of her case at the epilepsy clinic, and they have made the very bad mistake of not returning calls promptly. Never do that, because Dear Husband will tear you a new one. I wish I had some of his assertiveness. Anyway, he did finally find out that the team was discussing her case today. Not that we will know anything for some time still.

Thankfully, Firecracker is doing well at school. She reports to me every day the status of her tumultuous relationship with a boy named Eric. He alternates between being her friend and being not her friend. She also reports on the "mean girls," who have not yet been identified by her teacher (the classes mingle during recess).

DramaQueen and the girl next door made a cafe, complete with food, menus, trays, servingware and cutlery, all made from paper. She also has a fascination with lists. I've seen her happily occupied copying out names from the school year book, organized by grade. I have no idea why this delights her, but I've seen her bore her friends to death with it.

We're looking into buying a house. At the moment we are targeting a particular house that could just possibly be within our means and still keep us in our current school district. Most of the houses here start at 200k, so if this one doesn't work out, we will have to look into switching districts. Oddly enough, the really good school districts are in very expensive neighborhoods. Imagine.

Today we had the company picnic, with each agency representing a different era. We were the 70s. I went as Annie Hall, which I found much preferable to bell bottoms and disco clothing. We won a garish trophy (looked like someone's old golf trophy made over with hot glue and a lot of buttons, sequins and fringe, among other shiny objects).

Another high point--the coordinator gave me 5 or 6 sampler CDs from Paste Magazine. I benefit from his efforts to understand his son. Said son will be performing at The Earl on Halloween, and if I didn't have to do the trick or treat thing, it would be worth it to see our coordinator at a rock concert. But the CDs are lots of fun.

Perkier in Some Respects

On Friday last I had the second surgery in the reconstruction process. This was outpatient, so they booted me out the door before my head had stopped wobbling from the anesthetic. I don’t remember much about the rest of the day. I am now rather itchy, and I have to wear this very attractive heavy-duty surgical bra that practically goes up to my neck. This procedure was a walk in the park compared to the last one and I can see that by the time all is done I will look pretty decent. In fact, since they had to modify the left breast a bit to achieve a match, I’ve had a lift gratis. I can stave off the aging droop a bit longer.

Now that I’m through this hurdle, the full realization of Firecracker’s condition is creeping upon me. The very idea of brain surgery makes me feel queasy. And how on earth do we explain this to her without scaring her half to death? Particularly when I myself am pretty scared?

I’ve been wondering why I don’t feel much like shaking my fist at God, and I conclude that my idea of God is so flat and remote that it would be like shouting at a cardboard cutout or talking to a psychoanalyst:
Me: My kid has weird things growing in her brain and who knows where else and this is just one but probably the worst in a long list of catastrophes we’ve had to deal with in the last 8 years.
God: That’s very interesting. How do you feel about that?
Not exactly Abba, huh?

I’m also feeling terribly restless. Reading is how I usually soothe myself—it gives my mind somewhere to go. But I can’t stop in the middle of the work day and open a book. All my work is in aid of church planting. Does North America really need more churches? What should I be doing instead? Don’t know. Have never known. What do I want to do? Stay at home. I think. Maybe.

Caring Bridge

8/27 update:

Sorry to anyone who tried to click on the link--I put in an errant period. I've corrected this and tested it and it's now working. Thanks, everyone.

I've decided to out myself so that I can direct everyone to Firecracker's Caring Bridge site. We'll post updates about her and you can sign our guest book. Just go here: http://www.caringbridge.org/visit/abbyswartz.

I am also posting a new video. It has the same pictures, but it also tells you those who didn't survive, and it has the contact information for the TS Alliance.

Thank you to everyone who has left messages of encouragement. I know many of you are praying for us, and we are so grateful.

The Faces of TSC

I'm worn out and don't have much to say. There's no news, really. I have my second surgery on Friday, but it won't be nearly as difficult as the previous one. In October there is a Tuberous Sclerosis regional conference here in Atlanta, and we will go to that for a crash course. Here is a video called The Faces of TSC that we found on YouTube. It seems you can find anything there. There's even a message about TSC from Julianne Moore, but I think this one is more interesting.

The bad news and the, well, what is the good news?

Tuberous Sclerosis Complex is a genetic disorder that causes benign tumors to grow on vital organs. When they grow in the brain, as they are for Firecracker, they cause seizures. They can also grow on the kidneys, lungs and heart, and the skin is usually involved as wel. "Benign" is something of a misnomer, since they can disrupt organ function just by being there. The specialist is pretty certain that Firecracker has TSC. In fact, when he examined all the films again with a neuroradiologist, he found 4 lesions, not the 2 he originally told us about. Unless there is a compelling reason not to, she will have brain surgery to remove the lesions. And she will have to have her other organs scanned to make sure they are clear.

There's no cure for this stupid disease, and there's no way to predict its course. It can cause just a few problems or it can endanger your life. All the information I've read states that TSC patients live a normal life span, at least statistically, but just how disabled they might be during that lifespan is unknowable. Some children are autistic and some severely retarded. Firecracker is neither of those, but the lesions are causing seizures, learning delays, and behavior issues.

We're waiting for the results of a genetics test. That will take 2 months. Because it's a genetic mutation, any children Firecracker has could also have the disease.

Dear Husband thinks I'm in denial, that I'm not here, because I'm not constantly in tears. I think I feel more fear than sadness. A kind of cold, clawing fear that has settled into my stomach. It makes me tense and then tired, waiting to find out when, how, what next.

More Medical Mysteries

So, Firecracker spent last week in the hospital hooked up to an EEG and confined to the area of her bed covered by a video camera. We had to deprive her of sleep, drop her meds, and keep her off food and water between 8 am and 3 pm every day. She has had seizures since age one, and she had an MRI at that time that did not reveal anything. Her MRI this time, however, showed lesions. The goal with the hospital stay was not just to record her seizures but to catch her in one, shoot her full of dye, and wheel her in for a contrast MRI. She also had a CT scan and will have another MRI next Monday. Then the epilepsy team at the hospital will confer and decide what course of treatment we should pursue. It took the whole blessed week for them to catch her at the right time.

One of the concerns is that she may have something called Tuberous Sclerosa, which is a genetic disease that causes benign tumors to grow in the brain and other organs. This would be a very discouraging diagnosis, since there is no cure for Tuberous Sclerosa, and it’s impossible to predict what impact it will have. So, because she doesn’t have any skin markings associated with TSC, she will have a special test done to determine if she has the genetic markers. If it’s not TSC, it could be scar tissue from a brain bleed, or it could even be related to celiac disease (the doctor ordered labs to determine if she is gluten intolerant). Whatever it is, the lesions are placed in areas responsible for language, mood control and executive function, and that tells me there’s a long, difficult road ahead.

Needless to say, last week was just awful. Added to that, my MIL came into town to help and ended up alienating the nurses and doctors. She told the neuropsychologist that she didn’t believe in IQ tests while he was trying to evaluate Firecracker, and she generally tried the patience of everyone by being bossy and demanding. She came with the best intentions, to be helpful, but she is really not at her best when over-tired. She has a tendency to parent my children that I find really annoying. But I’m not very good at maintaining firm boundaries, as Dear Husband is always pointing out. She also seems to have fed Firecracker nothing but sugar during the entire hospital stay. I am now working on getting her to forget that glazed donuts exist. Ironically, MIL got uptight when I was going to let Firecracker have a second piece of sugarless gum (one of her parenting on my behalf moments). Gum – donuts. Call me crazy, but I prefer a stick of fake sweetness to a ring of lard coated in sugar. Well, actually, I adore donuts, but I don’t think I need to encourage that in my offspring.

Stopping by to chat

I’ve been too busy at work and too annoyed with my computer at home to blog. And I just got the new Harry Potter book, so you may not hear from me at all until that’s done.

Last weekend we went to Savannah. I grew up in Georgia, but I had never seen Savannah. I thought this needed to be rectified. Now I’ve decided that we should pack up and move there.

It’s so durn pretty, and there’s a beach that isn’t wall to wall hotels and beautiful renovated Victorian houses and the streets are laid out around squares. The old town is prettiest, of course. Like everywhere else the suburbs are bloated with new developments, Wal-Marts and B&Ns and such. But it was still a blast. I particularly enjoyed the beach, and I’m not a beach person. We were lucky to have mild weather and to get there before the crowds. Tybee Island is very low key and there are no high-rises—-just ramshackle little bungalows. I’m not a fan of the Atlantic, but I got past comparing it with the sugary sand and clear blue water of the Gulf.

That was one of the high points. The other is that Dear Husband’s immune system appears to have righted itself. The doctor thinks that once he started the gluten free diet, it took the stress off his T cells or whatever they are.

My doc put me on a bit of Prozac to drag me out of the pit. It is making me very very hungry. The kind of hungry that's right next door to nausea. Next week Firecracker goes into the hospital for a video EEG. We have to decrease her meds so that she’ll have lots of seizures for the doctors. I am not looking forward to that.

I recently looked at our budget and discovered that we spent $800 on medical expenses last month. Ouch.

God, what are you thinking?

This is one of those times when my patience is tested. I think as a family we've been through quite a lot in the past few years. But, no, there's still more. Dear Husband has recurrent sinus infections, which landed him at the ENT. The ENT found polyps and a deviated septum, but he also referred Dear Husband to an immunologist, because he has stopped responding to oral antibiotics. The immunologist took 6 vials of blood and ran every test imaginable.

The upshot is that Dear Husband has some sort of auto-immune disease, the exact nature of which is still to be determined. He's not making enough IGg or some such. The treatment for this is monthly IVs of gammaglobulin or whatever the stuff is.

He also has celiac disease. We've been kind of wondering about that possibility for a while, and his primary care doctor had a test run that came up negative. The immunologist, however, found several indicators (anemia and other nutritional deficits, IBS, lactose intolerance and other measures)and said the best indicator of all is how Dear Husband feels when he eats wheat.

Could life get any more complicated? Our family looks like this:

Me:
ductal carcinoma in situ, mastectomy and reconstruction, possible tamoxifin therapy for 5 years.
bipolar II

Firecracker:
Hypothyroidism
Epilepsy
Asthma
Reflux
learning delays

Dear Husband:
Interstitial Cystitis
Irritable Bowel Syndrome
Primary immunodeficiency
Celiac disease

The only healthy person in this family is DramaQueen.

But, hey, I found out that Outback has a gluten-free menu, and we have a gift card. I guess some provision has been made.

So, God, enough already.

Oh, did I mention that having primary immunodeficiency completely destroys Dear Husband's dreams of becoming a nurse, a career he has set his sights on for the past few years?

3 biopsies, 2 ultrasounds, and 1 MRI

So, what had seemed like a simple matter keeps expanding into new territory. The surgeon I've consulted is not happy with all the calcifications in my right breast. She's worried that more atypical ductal hyperplasia is hiding out. An MRI did not help clarify the matter, but it did "light up" on the left breast, so now I have to have a biopsy on that side, too. And since the area in question doesn't show up on mammograms or ultrasounds, I'll have to have an MRI guided biopsy. So, I get to lie in a tube, with an IV and earplugs and a headset while the biopsy is performed. Maybe they'll be nice and remove the headset. Meanwhile I've had a second biopsy on the right side, to see if other tissue is affected. The doctor is sending off everything for a second opinion, because, as she says, "It's complicated."

Besides my own journey through the local hospital, Firecracker has been having more seizures, so her neurologist will be sending her to the hospital for a special EEG, one that will last from 3 to 5 days. They'll reduce her meds to induce seizures so that they can figure out what part of the brain is producing them. And at some point they'll whisk her off post seizure, sedate her, and do an MRI of her brain. That means that she won't be able to eat or drink anything. And, of course, she will have to remain in bed the entire time. And they will be videotaping her as well. This is happening in late April, unless we get to the top of the cancellation list. How do I amuse a bed-ridden but energetic 5 year old for 3 or more days, particularly when she can't eat or drink? I'm exhausted just thinking about it.