Detective Work

I haven't been a frequent user of the health-care system for the last 10-15 yrs (i.e., I haven't been sick or injured - except for those stitches in my lip a few years back from playing basketball...) I know it sounds funny considering my EE background any my career as a patent attorney, but everything in the doctor's office is so fancy-schmancy these days - it's all high-tech and stuff. I'm still getting used to it. The thing that confuses me though is why you still have to fill out so many forms by hand - name, address, phone number, social security number, insurance carrier, this number and that number. Goodness, what a colossal waste of time - that shouldn't be necessary. Of course, I do understand the red tape and the bureaucracy that impedes the infusion of technology into the health-care community. Oh well.

I've talked to several people now that have convinced me that it is unacceptable for me to have waited this long without any information regarding a diagnosis. At this point, the only information I had was that the pathologist thought it might be lymphoma but had deferred the diagnosis, pending a second opinion. Surely there was more information to be had than that. So, I started making phone calls today.

I talked to the surgeon's office and they gave me very little information; however, I probed just enough for the nurse to mention the name of the pathologist doing the tissue analysis. Google gave me some info about the patholgist, including his phone number. His secretary assumed I was another doctor and offered to give me his cell phone number since he was out of the office. She was surprised when I told her I was the patient, but she was very helpful. She faxed me a copy of the pathology report. Sure enough, the report was lacking much in the way of diagnostic info. However, I was able to glean a few things: there was a lot of fatty tissue in the sample and there was evidence of "crush artifact." As best I can tell, crush artifact is basically tissue that has been smashed and is, therefore, fairly useless. Ok...

Next, I noticed that the pathology report included the name and address of the "second opinion" doctor. Why not give him a call? Google actually gave me his direct line, which caught me a little off-guard when he answered the phone. Fortunately, the health-care industry isn't that far behind the technological times. A simple "Engstrom, that's E-N-G..." and he pulled up my file on the computer. He said that they're going to do the best they can with my sample - hopefully, they'll have something back by tomorrow. It turns out that he's not sure they have enough tissue to render a diagnosis. Based on my previous detective work, it's obvious that between the "abundant amount" of fatty tissue and the "crush artifact," there just isn't a lot of good tissue available for diagnosis. But the doctor sounded hopeful that they could make it work with the sample they have. We'll see.

I finished our conversation by asking whether or not I'd need to have another biopsy. He was a little surprised when I told him the first biopsy was done with "the scope" (i.e., mediastinoscope). I suppose his thinking at that moment was that it should have been a relative slam-dunk to extract ample tissue with the scope. I would have thought the same thing. Anyhow, he did say that I may need to have another biopsy.

Great.

I'm pretty laid back and take most things in stride and I'll do the same in this case if I do end up needing another biopsy. It's not worth getting hot and bothered about it. However, I will follow the fool-me-once-shame-on-you-fool-me-twice-shame-on-me approach from here on out. I already have an excellent oncologist lined up thanks to several personal recommendations and a fair amount of research. Perhaps I'll need to tap into my personal network again to find a new surgeon...

No News

So, we were expecting a preliminary diagnosis today. No dice. The doctor did call today to say that the pathologist was essentially punting on the preliminary diagnosis. In other words, we have to wait for results of the tissue tests, which won't be available until early next week. The buzz from the doctors still suggests lymphoma.

I've had lots of time to read today (inbetween naps). My friend Jeremy sent me this gem about Mormonism and Democratic politics. I enjoyed it.

There's a Zebra in My Chest

As many of you already know, it appears that I have cancer. I’ve decided to enter the Realm of the Blog to document my journey and provide updates to family and friends. At the very least, I intend to post the latest status/medical updates. If I really catch on to the blogging vibe, I may post much more.

I am feeling a bit wordy at the moment, but I’ll try to start with the Cliff’s Notes version for those people who don’t want to read an entire dissertation...

About 6 months ago, I started to complain about itching – generalized itching all over my body. No rash, no swelling, no hives. Just itching – head to toe, back, legs, feet, arms, chest, face, etc., etc. I finally broke down and went to a doctor (something I hadn’t done in probably 10 years). He immediately referred me to an allergist, assuming the itching was allergy related. I suspected early on that the source of my itching was more serious than mere grass pollen, but I played along knowing that jumping through hoops is easier than fighting with the doctors. Apparently, a common teaching analogy in medical school involves a horse and zebra. The logic goes like this: If you’re out in the mid-western United States (e.g., Nebraska) and you hear hoof beats off in the distance, it makes the most sense to assume that the hoof beats are coming from a horse. Only after you have determined that it’s definitely not a horse should you entertain the possibility that it’s a zebra. Really, the logic is sound. So, I spent a couple of months letting the doctor chase horses. Then, at the beginning of last week, I finally had a CT scan of my chest that revealed a 9cm x 4.5cm zebra in my chest cavity. So much for horses.

Pretty much any doctor will agree that generalized itching plus night sweats (another symptom of mine) plus a large tumor in your chest add up to cancer. More particularly, these symptoms/findings suggest lymphoma. Even more particularly, they suggest Hodgkin’s lymphoma (as opposed to non-Hodgkin’s lymphoma). But the only way to know for sure is to do a biopsy. Needle biopsies are an option, but not preferred for possible lymphomas. So, they scheduled me for day surgery yesterday. The surgery (mediastinoscopy) involves a small (1 inch) incision just above my collarbone into which they insert the mediastinoscope. Using the mediastinoscope, the doctor cuts out a small chunk of the tumor which is analyzed by a pathologist to determine what it is.

Today I’m at home recuperating from the surgery. My neck and chest are uncomfortable and I’m tired and groggy, but I’m not really in too much pain. It turns out that the pathologist wasn’t able to diagnose the tumor on the spot as expected, but he did go as far as to say the sample was consistent with a lymphoma. And thus we wait. We should have preliminary results back tomorrow and a final diagnosis early next week. Until then, it’s not official, but it’s pretty safe to assume that I do have cancer.

How do I feel about having cancer? Honestly, I’m not that worried about it. Hodgkin’s is very treatable and I have every reason to believe that we’ll be able to treat it and move on. That’s not to say that the next few months are going to be a cakewalk, but I’m fully confident that I’ll be fine in the long run.

It almost seems trite and too impersonal to offer a blanket “thank you” in a blog post, but I want to say thank you nonetheless. Skye and I have been overwhelmed with the thoughts, prayers, gestures, and kind words so many of you have given to this point. They are inspiring and uplifting and very much appreciated. So, thanks again.

Surgery Day

Reflections by Skye:

***********

I think there must be a requirement that anesthesiologists are funny. I've never met an anesthesiologist that wasn't joking around while going through all the pre-op questions. Even Jared's college-buddy -- from whom I've never had anesthesia personally, but who is, in fact, an anesthesiologist -- is a really funny guy. Maybe it's somehow the professional version of your friendly neighborhood dealer. You go to him for your happy fix, and he is all casual and relaxed and funny and personable making you feel all relaxed about the drugs you're taking, like it's the most normal thing in the world.

***

Various nurses, doctors, and other personnel explain the procedure to us. They'll make an incision above Jared's sternum, in his neck, reach down and around from there, blah blah blah, take out a chunk of the tumor. The pathologist will take it away and biopsy it on the spot. If he has enough, he'll tell them they're o.k. to sew Jared back up. If not, he comes for another piece and tries again. Jared gets tubes down his trachea and such, but he won't remember them. He'll wake up, drink some apple juice, eat a cracker, pee, and go home. If all goes well.

***

Sitting in the pre-op area, Jared's veins are being pumped with saline solution. Measurements on the bag are in increments reading 1 through 9. 1 through 9 whats? Not milliliters. Not ounces. "Probably cc's" says Jared.

"Oh yeah," I say. "cc's." I think about that. "What are cc's anyway?" Jared shrugs. Some word they use on E.R., which is the only reason we thought of it.

***

A song comes on the speakers -- apparently they pipe music into the pre-op area, for the nurses or to calm the patients, I don't know --it's that old Paul Young song from the 80's: "every time you go away/ you take a piece of me with you."

"You should sing this song to the pathologist," I say to Jared. He laughs.

"No. I'm probably not even going to see the pathologist."

"The surgeon then! I dare you!" I probe. Jared refuses, but we chuckle at the thought. Later, after the surgeon has talked to us and is walking out of our stall, I almost sing it through the curtain, but I don't.

***

The waiting room is in the center of the hospital. It's small. It has other people in it sitting in chairs, reading magazines, in various stages of stress and worry, it's over air-conditioned, the television is on, the newspaper sits on the coffee table untouched, the plants are fake. Everyone here has either a furrowed brow or a blank stare; it feels like they're all smoking, but they're not.

Outside it's 75 degrees and sunny and beautiful. I go out and try to find a place to sit on the hospital grounds, but there's only a smokers' bench, complete with Smoker. I find a bus-stop across the parking lot, where I pretend that every bus that comes just isn't my bus. I stay there as long as I possibly can without feeling like I might miss the surgeon who will look for me in the waiting room -- and in the waiting room only. I call Emily Potter and say things I've been meaning to say, ask things I've been meaning to ask. I relish the diversion. 45 minutes later I know I have to get back, and in the cruelest real-life-soap-opera-to-be-continued way I have to cut off our conversation.

***

Any minute now he'll come in here and tell me Jared's diagnosis. Will he have a prognosis too? I don't know. I doubt it. Why do so many medical terms end it "nosis"?

***

He came. No diagnosis yet. I guess the pathologist feels confident he has enough tissue, but is still "cooking" as the surgeon called it. It looks consistent with lymphoma. Maybe we can get preliminary information by Friday. Probably no final diagnosis until Tuesday. Drat! I was totally expecting to know today.

***

Jared's Mom is calling. She's his mom. She wants to know. I have to tell her... what? That I know nothing? Yes. I have to tell her that. She's his Mom. But I don't feel like talking to anyone. Anyone but this blog. ...Hello blog.

***

All my friends are at a barbecue, watching a movie on an outdoor screen. My baby is with them. I keep forgetting that we can't just go over there when we're done here at the hospital. If there were longer to wait, I'd go over there by myself. Jared would want me to. But I never know when they'll come. And besides, what kind of a perverse wife goes and barbecues with her friends while her husband is having surgery next to his heart?

***

I was thinking, "hospitals have cafeterias," so I'd be fine for food. But I'm afraid to leave this little waiting room! What if they come for me while I'm gone? What if I trade a rubbery grilled cheese and room-temperature pickle for my chance to see Jared again? And if I missed them, what would I do? It's 7:30pm and all the personnel desks are empty. The waiting room desk, the information desk, the admitting desk, the day surgery desk. An occasional nurse with a clipboard walks by. Men of non-European descent wearing scrubs are pushing carts around the hallways bearing various items -- towels, blankets, linens, laundry, files, cleaning supplies, body parts for all I know.

I get a text-message that my baby is finally eating (she had been refusing before -- apparently she's become a breast-milk snob. She won't drink formula, and now I guess she won't drink frozen breast-milk either. Only the best and freshest for baby. She takes after her food-snob mother, I guess). Anyway, I'm relieved. And I wish I was eating.

***

My Mom calls. She's been out of town, hard to reach, and it's good to hear from her. I give her the update.

She has this habit of cutting off conversations before I'm ready to go. She's not unnatural about it or anything. I think she must just feel that the conversation is over, I've given her all the information I'm going to, and so she says something like, "I'll be keeping you in my thoughts," and suddenly she's saying goodbye. And while I'm always a little taken aback, and I often want to say, "wait, I wasn't done talking to you!" I don't really know what else I would say. If she were to say, "Oh, I'm sorry, what else did you want to talk about?" I would have to think about it and say, "I guess... nothing." And that would be the truth. I think the thing is sometimes you just want to talk to your Mom. Sometimes you just want to feel like she's paying attention to you and she's there, and it doesn't matter what you say. And so once the substance of our conversation is finished, I really have no logical reason to keep her on the phone, except that I don't want to hang up.

***

A man and a woman just walked past. I heard them before I could see them. She was saying, "Oh my God," quavery, under her breath. When I saw her she was crying, her hand was over her mouth, she looked shell-shocked. The man's arm was around her shoulders as he walked her toward the exit.

Reality Check: I am sooooooooooooooooooooooooooo grateful that Jared's cancer is a treatable one. Highly treatable -- assuming it's what we think it is. It's easy to think of all this as so dramatic painful scary awful, to expect people to pity us, to pity ourselves. But, really, this is not so bad as all that. There are far worse things that could happen. I'm so glad that my surgeon came and told me that everything went fine, that it looks like lymphoma, that I'll see Jared in an hour or so and then we'll go home and soon we'll arrange treatment. I'm so glad I'm not the lady crying down the hallway with my hand over my mouth and "Oh, my God" echoing through my head, anointing my trembling lips.

***

Get Yer TyBooks!

Time for my personal soapbox of... Products I Would Endorse For Free Because They're The Best and Everyone Should Know About Them. Up first....

TyBooks!

These are the coolest coolest things! They are indestructible baby books that feel like paper, but can be chewed and crinkled so babies love to play with them! Seville has had a prototype for a few weeks and they're her favorite thing. The company was just launched this week and they have some introductory prices at www.TyBookInc.com. They are well worth the price. Here are excerpts of their announcement:

Anybody who's ever watched a baby knows what will happen with anything he gets his little hands on--he'll put it straight to his mouth! Books are no exception. In fact, paper seems to be a favorite material for chewing, crinkling, crunching, wrinkling, sucking on, and playing with. Unfortunately, paper books (even board books) can get soggy and come apart, not only destroying the book but becoming a potential choking hazard for baby. Don't you wish you could let your precious little one delight in exploring books the way she'd like?

Now you can!

TyBook introduces a revolutionary new baby book invented by a mother of triplets who wanted to share books with her babies, hassle-free. They are water-proof, tear-resistant, and baby-durable, making them the perfect books for babies who "read" with their little hands and mouths.

• Tear-resistant - can hold up to baby's tugging and pulling (see "Dare to Tear")
• Waterproof - can be chewed and sucked on
• Simple stitch binding allows them to slide easily into a diaper bag
• Easy-clean with water and soap if needed
• Great baby-shower gifts!
• Age-appropriate, wordless pictures to encourage dialogic reading
• Featuring illustrations by artist, Kaaren Pixton
• Meets ASTM safety standards

Mining in Montana

We just got back from our trip to Montana, where Seville got her first sunburn and a host of mosquito bites. I feel like a bad parent every time I look at her poor little spotted, dappled, and peeling face. I'm told I should get used to this feeling.

"Why go to Montana?" you ask (everyone does)(ask, that is). Jared's family has a mining claim in the Bitterroot Mountains. His Great-Grandfather was a gold miner, and the family has kept up the mining claim ever since. The campsite is where grandmother was born, the foundation of the old cabin is still there, and so is a bunch of old rusty mining stuff. It's actually pretty cool. Anyway, here is a sampling of the weekend:

Seville hangin' out safely on the island of Baby Einstein. Montana looms.

Trying to accomplish naptime in a hammock (it was too fun for napping)

The Hot-Springs gang, all clean and fresh (except for hot-spring algae stuck in our hair and crevices, but other than that)

Seville standing on Daddy's lap (and sooo proud of herself for standing)


Slideshow with more pics:

Seville Gets Cuter

We're not so good, actually, at taking pictures all the time. But you've been asking, and here they are (tip: the last picture is actually a video. If you click on it the video will play (but you have to click on the picture, not on the "play" icon)(or just go to our family youtube playlist on the right))





Next up: pictures of Montana coming soon...

She's MY daughter too!

For all you blokes who keep saying she looks just like Jared, here is my evidence that she looks like me as well. What do you think NOW?:


1975

2007

Not that I'm saying she doesn't look like Jared. She most certainly does, but I have hope for her yet. I'm crossing my fingers that she has inherited some of my feminine beauty and not just Jared's rugged handsomeness.

First Baby Backpacking Trip (oh yes, it can be done)

This weekend we took Seville on her FIRST BACKPACKING TRIP! Ochoco National Forest in Oregon. This trip was the reduction of the Sevilla, Spain trip we were planning, which became a week of backpacking in Southern Utah, which became a long weekend on Southern Utah, which was eventually whittled down to a backpacking trip in Oregon. BUT... it was super fun. And probably better to start small and work up from there, since we're first time rookie parents and we don't know what we (or she) are capable of.

Seville all bundled up and ready for her first night in the The Great Outdoors. It was freezing and Mommy was paranoid all night about her. She ended up sharing Mommy's mummy bag (which is NOT big enough for two... even if one of the two only weighs 12 lbs)

Good Morning!

Even Seville gets camping face! :)


Seville's morning games with daddy


Everyone took turns packing a little extra.

When Daddy got tired, Mommy took a turn packing Seville

When Mommy and Daddy were both tired, Seville took a turn packing Daddy (and his pack!)

Naptime was never so good. Birds are a'singin', bees are a'buzzin', the brook's a'babblin'. aaaaaah.

More fun pics at the online album:

Backpacking Ochoco

Baby Videos

Okay, so I keep going a little crazy with the 20 second videos. Rather than post them all here, I'll just provide a link to the family "playlist" on YouTube.

Chatting with Seville

In the last couple weeks Seville has started "talking" to us. It took several tries to get it on film (how does she know to stop when she sees the little black and silver box?!), but at long last, ladies and gentelemen, here she is!

SuperBaby!

This is what Seville does when you hold her in the air. She stiffens her body and legs and arms like she's flying. Funny. Come to think of it, I aughtta get her a cape. We call her SuperBaby when she does it.

Seville's got milk, do you?

Happy Easter from Seville!

Seville Learns to Bat at an Object

We figured out how to take short videos with our regular camera, so here's our first attempt. Seville has been looking at this lady bug for weeks, and since yesterday she's been trying to grab it. Today she had success a couple of times. (We didn't know our camera recorded sound until afterward, so you even get the cheesy delighted parents in the background).