Breathing Normally Again

I feel like I can breath again. DD17's oncology and radiation visits went well, but most of all her scans were clean. (Well, we haven't received the spinal MRI "all-clear" but I've never been especially worried about that.)

For some reason, I had been very anxious about the appointments. Most likely because last year I was finally feeling relaxed at the 5-year mark, and then look what happened. And I tend to read too much into expressions, comments, looks and even scurrying MRI technicians (why are they hurrying with those scans in their hands, never mind that there are usually a half-dozen people getting scans at the same time). It feels like it's all about me (or DD17), so I have tunnel vision.

I think the oncologist knew we were nervous, because she called us on her way home from the hospital yesterday to say she'd personally gone down to MRI and had the scans reviewed in front of her so she could call us. Of course, from past experience, I know that bad news travels fast and we've never been allowed to even leave the hospital without hearing it.

So, today feels like a good day, mostly. There's a tiny part of me that always expects a phone call from someone saying a mistake has been made, but I've come to accept that I can't trust my instincts all the time. That a finely-honed sense of anxiety will always cloud my vision where DD17 is concerned.

And truthfully, as the oncologist reminded us, an MRI for DD17 is really just a shot in the dark. Her particular tumor is a fast-growing type that wouldn't necessarily show up in a once-a-year MRI. Still, as long as our insurance will pay for it, the oncologist recommends we continue them.

The doctor spoke for the first time about the future. Since about 75% of children are now surviving cancer, long-term survivor clinics are springing up across the bigger hospitals. She said DD17 can be her patient forever, or until she decides to switch to an adult oncologist. Patients can choose either/or. The oncologist is part of a major teaching hospital, so it doesn't matter...the doctors are all connected. And she sends kids to other hospitals or specialists as needed. I sense the doctor thinks they are all in this fight together.

Who knows the problems these kids may face? For DD17, we know she will likely start mammograms at age 30, due to the scatter from spinal radiation. And she will probably need to start seeing a dermatologist yearly, for skin cancer checks. We know that radiation puts kids at higher risk of leukemia, so bloodwork will always be in the cards. As her radiation oncologist said to her, "You will see doctors for the rest of your life." Indeed, a small price to pay.

Midweek

The older two have midterms this week, which means a week of half or truncated days. And then turning around and heading back to school in the afternoon for activities. Mom the chauffeur here, since we don't have spare cars lying around for DD17 to use.

DS16 has his second (bad) cold in a month. He eats well and generally sleeps well, so I can't figure out what's going on. Of course, my instinct is that it's something I should be able to "fix" so I'm quite perturbed. He's a distance runner, so I'm wondering about stuff I've read lately about runners...that they're more prone to upper respiratory infections. It seems there's a point where excessive mileage suppresses the immune system. Marathoners are famously prone to illness the first few days after a race. He doesn't fall into that category of course, but I find the whole phenomenon interesting. Or it could just be that half the school is sick, as usual.

The sun is finally shining and it's above freezing! DD17 says she's happy to be home midday and see the sunshine flooding the house. She even said that while she didn't enjoy being sick or recuperating from medical issues, she did like being home during the day. OK, glad that made her happy.

Next week we have two days of hospital visits. Monday's a visit with both the radiation oncologist and pediatric oncologist. Tuesday is the MRIs. (They couldn't make everything fit in one day.) I'm trying not to think about it.

Thoughts on Health Care Reform

It's cold and snowy here in the Northeast, and I find myself pondering the health care debate. I have no idea whether or not the current plan under consideration in Washington is any good, nor do I doubt its complexities and hidden perks for various groups. I've tried to see various sides, and one thing is certain: there is no consensus out there, not among the medical profession, not among insurance companies, and not among family and friends.

But I do know what I would like to see:

• Guaranteed coverage for pre-existing conditions. DD17 hopefully will be out in the world in a few years, and she comes with medical baggage. Through no fault of her own, she will need monitoring and expensive tests and many more medical appointments than the average young adult. Other than relapse, my worst fear is astronomical medical bills due to weak or no coverage. In 2004 alone, it cost $250,000 to save her life and then keep her alive. We have great insurance...but it was not completely free. The nickel and diming was still expensive.


• The freedom to choose a physician and hospital. Once you enter the world of illness, control is an illusion. But it's important to feel you have a choice in the person and place helping you fight the battle.


• And I want the physician to make the decisions, not the insurance company. At one point during treatment, the oncologist said if we ever had any worries about possible symptoms (even triggered by a bad dream), she would run whatever tests we needed to put our fears to rest. That's what I want to hear from a doctor, especially one treating my child.
  

Finally, wouldn't it be great if there was a thoughtful approach towards health care? An approach that supported healthy choices before pharmaceutical solutions are necessary, one that encouraged proactive health management instead of reactive? Personal responsibility plays into this for sure, but support and encouragement from clinicians is important, too. Coincidentally, or not I guess, Andrew Weil's new book touches on these issues. I haven't read it yet, but plan to.

Well, that's one mother's vision, born of experience and worry. Walk a mile in my shoes, and you might feel the same way, too.

Whole Roasted Carrots and Parsnips

It's easy to overlook the root vegetables in the supermarket. Uninspiring in their boiled state, and requiring lots of peeling and chopping, they usually get relegated to soups and stews as a flavor enhancer. But if you roast them, another side emerges. Crispy, creamy, and nutty flavored, they suddenly gain respect as a side dish.

I'll roast just about any vegetable. Tossed with a bit of olive oil and sprinkled with coarse salt, vegetables can be as tasty as potato chips. Recently, I read that researchers believe that whole carrots are more nutritious than chopped, so I decided to roast tonight's carrots whole. And because I had parsnips on hand, I added those to the pan, also. I scrubbed and peeled both vegetables, than placed them on a baking sheet and sprinkled them with about two tablespoons of olive oil and some kosher salt. I roasted them in a 450 degree oven for about 40 minutes, turning once.

Carrots are a good source of Vitamin A and help protect against heart disease and cancer. Parsnips, a relative of the carrot, is rich in potassium and contains even more fiber than its colorful cousin.

These are so good and hopefully extra-nutritious. It's going to be tough resisting them until dinner.

Anniversary

"It takes a real storm in the average person's life to make him realize how much worrying he has done over the squalls." --Unknown

Today is the 6th anniversary of DD17's diagnosis. If you're touched by major illness, especially cancer, you never forget certain dates. For some, it might be the day of diagnosis. For others, it might be the day remission is declared. And for others, it may be the last day of treatment.

I will never forget the day our lives changed, nor the days leading up to it. Eleven days of progressively alarming symptoms. Eleven days of doctor appointments, emergency room visits, and a strange sense of foreboding that matched the frigid, dark January weather. All culminating in a rapid diagnosis and emergency brain surgery once we entered a major academic medical center.

I once read that most parents are very, very angry with their pediatrician after a brain tumor diagnosis, because what should be obvious after the fact is clouded in uncertainty during the onset of symptoms. I read that most pediatricians will only see about 1 or 2 children in their entire careers who present with a brain tumor, so their hesitancy to come to the obvious conclusion is understandable.

Still, I am thankful. I know for our family, life will never be the same. Maybe on the surface, but we look at things differently now. We know how short our time together is. We know life can change on a dime. And all of us say "I love you" very, very easily.

Almost No-Work Whole Grain Bread: The Result

It was good. Not great, but good. It has potential.

By the time the bread was ready to bake, the oven already held two chickens. So, I had to bake the bread on the top rack, which may have affected the final result...a bit dense, maybe a bit undercooked in the middle. But the flavor was decent, and I can see the potential in adding the other grains Bittman suggests.

After aging a day, the bread seems more like a quick bread, with the consistency of banana bread. The recipe does say this version doesn't rise very high, and mine certainly didn't after 24 hours. Then again, my house is cold this time of year, even the kitchen, so that may be part of the problem.

I will try this again for sure. It was almost no work.

One Year

It's been one year since I've started this blog. What a strange start it was, too. I was feeling hopeful and positive at the 5-year mark, but you know what they say. Life happens when you're making other plans.

So my goal for year two remains the same: pursue and chronicle healthy living while raising a family after cancer strikes. Maybe, just maybe, it will be food for thought for someone else somewhere. And at the very least, it may keep my writing skills sharp.

Late to the Party...Bittman's Almost No-Work Whole Grain Bread

I've written before how hard it is to buy good bread with few additives and no nuts. Homemade bread is the obvious answer, but realistically it's more an occasional occurrence than a regular event.

But I do like to experiment with bread baking, and I'm finally going to try Mark Bittman's recipe in Food Matters. I'll be honest...I tried making his Hybrid Quick Bread, and it was a disaster. The kids wouldn't touch it, and I didn't like it very much, either. It was tough and had no flavor. Maybe I'll try it again, just to figure out what went wrong.

Anyway, I won't reprint the recipe for Almost No-Work Whole Grain Bread, but it's a 12-24 hour project (mostly just letting the dough sit around) and I started it today. I'll try to post part two tomorrow, but meanwhile, here's how the dough looks right after mixing (I cheated and gave it a knead or two, and I added a cup of cornmeal instead of the third cup of wheat flour):

International Delurking Week 2010

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Update on the War on Cancer

Yesterday NPR had an interesting interview with Dr. Jerome Groopman of Harvard Medical School and the author of The Anatomy of Hope and How Doctors Think. He gave his assessment of the so-called War on Cancer and several points stood out for me:

• Cancer has proven to be a tenacious enemy. We are not yet winning the war, but we have won some battles.
• There are ongoing studies on the role of inflammation and even infection as a possible precursor to some cancers. When DD17 was first diagnosed, a nurse relative spoke with a doctor friend at her hospital who suggested some brain tumors in children could indeed spring from an infection earlier in life. I had never heard of this at the time, but we know that infection can cause cervical cancer, so why not brain tumors?
• Cancer treatment varies widely across the country. Access to a major, university medical center is access to cutting-edge surgical teams and treatment options. I am so very, very glad we are within an hour of wonderful hospitals. During treatment, I often wondered how parents coped when they lived far away from major hospitals. Traveling for treatment must be incredibly stressful, expensive, and disruptive to the whole family. And staying local may be settling for substandard care.
• The role of vitamins is potentially dangerous in cancer patients. I struggled with this one for a long time, and still wonder. I've always given the kids a multi-vitamin, but stopped giving one to my daughter when I couldn't find consistent information on the pros or cons of vitamin supplementation. Dr. Groopman is blunt: "Cancer cells love vitamins...because it feeds their growth."

Dr. Groopman's books (at least the two I've read) can be difficult to read. They present true patient stories, and not all of them end well. But I guess that's reality. I received The Anatomy of Hope soon after DD17's diagnosis and couldn't finish reading it. Many of the patient stories ended badly. I had to keep reminding myself that this wasn't our story, and each cancer journey is unique.

I've found oncologists to be, if not exactly pessimists, not optimists either. They never promise you anything. Sometimes, you just want a nugget of hope, but their clinical training keeps them grounded in black and white, when sometimes we are just searching for some shades of gray.

The full interview with Dr. Groopman can be heard here.

ScreenIt.com and Choosing Family-Friendly Movies

Our family rarely (okay, almost never) goes to the movies. Instead, we'll wait for movies to come out on DVD and watch them at home. The older two don't really go with friends, either...it's just not their type of entertainment...too passive, perhaps. But younger DS13 hangs with a movie-going crowd, and it's become a problem. This is a tough age when deciding which movie is appropriate for him to see. I'm very conservative in what I'll allow for entertainment, and dislike having to shell out cash and have my kids exposed to what I consider objectionable content. Most PG-13 movies contain a scene or two that I'd rather my son didn't see.

Thankfully, there is ScreenIt.com to take the guesswork out of choosing a movie. You can subscribe to the site, but if you scroll down to the bottom of the screen and click on the "No thanks" button, you still get sufficient information to help you decide which movies to allow your kids to see. I don't subscribe and find the free information very helpful for the amount of movies we see. Both current and past releases are reviewed.

Parenting is hard enough, and the entertainment world feels like the Wild West, so it's great to find a site that makes it a little bit easier to raise children.