Archive for December, 2009

Resilience

December 31, 2009

Yesterday, I bought Elizabeth Edwards’ book “Resilience.” It’s a quick book (213 pages) and I read in one sitting, and have spent today mulling its message.

Like a lot of people, I’ve lost my respect for John Edwards. No matter how noble his politican stances, it’s hard to admire a man who has an affair while running for president — a man with a dying wife and  two young children, no less! I’ve also had much  ambivilence about Elizabeth, considering how she encouraged her husband’s presidential run even after she knew that he had a secret that could destroy his candidacy. But reading the book made me feel much more sympathetic towards her, if not towards him.

The book is subtitled “Reflections on the Burdens and Gifts of Facing Life’s Adversities,” and Edwards doesn’t pull any punches about the adversities in her own life — the death of her  teenage son Wade in 1996, having Stage IV breast cancer, the discovery of her husband’s infidelity.  She also doesn’t pull punches about her struggle to deal with those issues.

Before her son’s death, Elizabeth writes, she was convinced that being a good person was enough to guarantee a good life, that willpower would address virtually any problem. Even after Wade died, she wrote, she clung to the belief  that somehow God would turn back time and her boy would come back. She writes:

I looked in every black Grand Cherokee , the model of car in which Wade died, hoping to find him. It had all been a mistake, I so wanted to believe. … I wanted to scream at people who were mowing their lawns or fixing their porch. Don’t build that high-rise, don’t paint that store. Please. My God is just about to turn back time. … (Wade) had to be here, somewhere here. I looked in closets, I opened drawers. Drawers! He was six feet tall. The distorted biology of a grieving mother. I knew as I opened the drawer that he could not be there, and yet I was powerless. I had to open it. What if somehow he could be there?

She is just as blunt and candid in writing about her cancer and her marriage. (One amusing story on the cancer front: At some point after the cancer had spread to her bones, Elizabeth discovered a rough patch on her neck and feared maybe her cancer had metastasized to her skin, too. She fretted for days and then confided her fear to her 25-year-old daughter, who looked at the spot. “I don’t know what skin cancer looks like,” the daughter said. “But I do know what a curling iron burn looks like.”)

The one thing certain about life, Elizabeth says, is its uncertainty.  She writes:

Every time I fall into a chasm — my son’s death or a tumor in my breast or an unwelcome woman in my life — I had to acept that the planet had taken a few turns and I could not turn it back. My life was and would always be different and would be less than I hoped it would be. Each time, there was a new life, a new story. And the less time I spent trying to pretend that Wade was life or that my life would be just as long or that marriage would be as magical, the longer I clung to the hope that my old life would come back, the more I set myself up for unending discontent.

… Let’s start with the unavoidable fact.If I had special knowledge about how to avoid adversities, about how to spot the pitfalls of life, I would spot them, I would avoid them, and I would share how I managed to that. I do not.  I have a lot of experience in getting up after I’ve been knocked down, but clearly, I do not know anything at all about avoidance. We all tumble and fall. I certainly have, but the truth is that is it going to happen, in some degree, to all of us. Oh, maybe everyone we care about will live to attend our funerals. Maybe disease will never make you afraid of a curling iron burn. Maybe everyone you love and who loves you will be loyal to you in every way for every day of you life.

Or maybe not.

Putting a price on colon cancer

December 30, 2009

Among my issues right now, paying for medical bills isn’t one of them. The Kalamazoo Gazette has provided its employees with Cadillac coverage, and since my cancer was diagnosed in mid-October,  my medical bills have exceeded $44,000 and I’ve paid exactly $12.53 out of pocket — and the latter was a mistake.

Still, I was curious to see exactly how much I’ve cost Aetna in the past few months and went on their website to add up my bills. In true journalist fashion, I created a spreadsheet and come with up some interesting findings.

One is that the one of the big benefits of insurance is not just that they’ll cover the bills — they also knock down the costs by negotiating with health-care providers. In total, my various providers have billed $44,405 since the original colonoscopy (with some bills not showing up yet). Aetna has paid $33,290, or about 75 percent of the billed costs. The providers have written off the remainder.  So just be being insured, my medical costs went down by 25 percent.

In studying the numbers, there seems to be little rhyme or reason as to these negotiated fees. It’s certainly not an across-the-board set percentage: Kalamazoo Anesthesiology has gotten 95 percent of what they’ve billed; by comparison, my first chemo treatment was billed at $147 and Aetna actually paid $22.44. 

(In fact, K’zoo Anesthesiology was better paid than my surgeon for what I can tell was, at best, about the same amount of time and effort. KA received a total of $3,000 for my hospital stay, which includes sedation during the operation and a quick daily check of my epidural IV for the first three days in the hospital, for which they received $273 per visit. The surgeon  got a total of $1,800, which included a pre-surgery office visit, the surgery itself and a daily hospital visit that definitely lasted longer than the KA visit to check my epidural.)

Below is a look at the numbers. It includes the cost of diagnosing the cancer, surgery and a five-night hospital stay, and cost of working with oncologists to get started on chemo (which includes outpatient surgery to install a Port-a-Cath, a semi-permanent IV line in my chest to be used to deliver the chemo meds).  

Cost of diagnosing the cancer

  • Colonoscopy:       $1,212 billed          $993  paid
  • Labs/pathology: $936  billed            $555  paid
  • CT scan:                   $4,936 billed         $3,173 paid
  • Office visit to deliver diagnosis: $153  billed            $125 paid
  • Subtotal:                 $7,855  billed    $5,229 paid

Cost to remove 12 inches of colon

  • Surgeon’s fee:  $3,984  billed        $1,802 paid
  • Anesthesiology:  $2,400 billed      $2,280  paid
  • 5-nite hospital stay:$21,663 billed       $18,296 paid
  • Epidural during hospital stay: $864  billed           $821 paid
  • Labs: $402 billed             $298 paid
  • Subtotal: $29,313 billed      $23,498 paid

Post-surgical cancer treatment  

  • Consult w/ K’zoo oncologist: $430  billed         $251   paid 
  • Consult w/ U of M oncologist: $415   billed         $273 paid
  • Port-A-Cath  installation: $6,548  billed      $4,331  paid 
  • Labs: $248 billed          $33  paid
  • 1st day of chemo: $147  billed          $22 paid
  • Subtotal: $7,823 billed     $4,942 paid

Grand total: $44,405  billed   $33,290 paid

                                             

Latest test results

December 29, 2009

Dr. Ensminger, the University of Michigan oncologist that I saw a couple of weeks ago, called me today to review the results of my CT scan. (Coincidentally, two copies of the CT scan report also came in today’s mail.)

The bottom line: The CT scans of my chest, abdomen and pelvis do not show any spread of the cancer, although the scan picked up two “nodules” on my lungs. The nodules were about 3mm, or about half the size of a BB, Ensminger said.

He didn’t seemed all that concerned about the nodules. He said about half of the people who get a CT scan at University of Michigan show something in their lungs, and many times it means nothing; it  could be a scar from childhood bronchitis or other illness for all they know. He also said the nodules were very tiny, which seemed to suggest it wasn’t a big deal.

However, he said I should get another CT scan in six months. If those nodules are bigger then — well, then there might be concern. But for the most part, he said he thought the results were very encouraging and that once I get through chemo, it should be smooth sailing.

Reading the CT reports was a sort of a weird thrill. My aorta and great vessels are “normal in diameter”; my pulmonary arteries were “unremarkable”‘; my heart is a normal size. I have something that might be a cyst in my left kidney. My bladder is “normal in size and contour.” My bowel had “prominent gas.” 

The report’s conclusion: “No CT findings to suggest metastatic disease in the abdomenor pelvis. There are no focal liver lesions, adrenal masses or enlarged lymph nodes.”

U-M also sent me three CD copies of my CT scan. The CD contains 348 images of my innards, in thin horizontal slices going from my neck to my pelvis.  Scrolling through the images allows for the sensation of traveling down inside through my torso. Ohhh, there’s a cross-section of my ribs! My liver! My tummy fat! 

According to the radiology report, the lung nodules can be seen on images 121 and 154. Harold and I both looked at those images, and have no idea of where those nodules might be. “Why can’t we see it?” Harold grumbled. “That’s why radiologists earn $600,000,” I said sweetly.

Whatever. Pictured above is image 121. You’re looking at a cross section of the middle of my lungs. The white spots forming an oval around my lungs are cross sections of my ribs. My spine is the white blob at the bottom of the scan.

A picture-perfect family

December 29, 2009

From the left: Sarah, Kevin, Julie, Harold and Kathryn.

All Harold wanted for Christmas was a family portrait. So Tony, my ex-husband who also is a professional photographer, came over Sunday night armed with lots of studio lights and equipment to do the deed. Here’s two of the proofs from the shoot. 

I told Sarah that if the cancer kills me, I want the photo of everyone kissing me to be the big picture on the easel in the funeral home. Sarah laughed. Sort of. And then said, “Don’t be dark.”

At any rate, Tony did a great job. If anyone needs a photographer for a wedding, senior portrait or whatever , look him up at www.anthonydugal.com.

Now for the medical/health update for Mom, Aunt Jo and the other relatives: By Sunday afternoon, I was back to normal, and today a friend and I went for a two-hour lunch at a Lebanese restaurant, where my stomach and appetite held up just fine. Looks like I’ll be in good shape for the next week, until my next chemo a week from Tuesday.

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‘Life is amazing’

December 27, 2009

Among the Christmas letters that I received this year, the best was from my friend Anne, a former co-worker for whom 2009 was a roller-coaster year, to say the least.

Anne has a 5-year-old son, Lee, who has been diagnosed with IPEX, a rare genetic condition that pretty much has blown out his autoimmune system. His only chance of long-term survival is a bone-marrow transplant, which he received this June in Cincinnati.

The operation required a months-long stay in Cincinnati for Anne and Lee, away from their Michigan home, and most of that has been spent in a fair amount of isolation because Lee is so vulnerable to infection. Anne’s other child, Katie, a third-grader, has had to live with her grandparents this school year. Six months after the operation, it’s still uncertain whether the operation was a success.  Writes Anne:

People ask me how I have gotten through all of this, and I’m running out of space to convey how this experience has changed my life. First, I haven’t always done it gracefully. There are days I am so tired of being the maid, the cook, the teacher, the nurse, and the best playmate. At other times, grief rolls over me like a towering wave because of all we have gone through and all we have ahead of us. In my more noble moments, I know that we are part of something bigger. I encounter the larger power every time we experience compassion. I know that gratitude is very powerful. I am grateful that I can meet this challenge. My life has purpose because no one is better equipped than I to handle this situation and I wouldn’t choose to be anywhere else right now. I remember that Life (the one with a capital L) goes on no matter how hard I fight and fume and feel sorry for myself. This too shall pass and when it’s all done, I want to look back with awe and wonder that I made the best of it for my kids and me. I know that my hardship has given others the chance to examine their own heartache. It seems as if everyone I talk to lately opens up about their trials past and present. Then they say, “Well, my worries are nothing compared to yours.” I reply that we all have worries (that’s part of life) and I’m glad I can listen if it helps them put their worries to rest.

In the past year, I have felt fear, anguish, despair and grief. But I also have felt the depths of compasion, honesty, love, acceptance, hope and peace that passes understanding. The journalist in me stands back and takes it all in with wonder. Life is amazing.

Anne has her own blog to update people about Lee. It’s at www.meetmysonlee.shutterfly.com.

The cost condundrum

December 26, 2009

For those interested in health-care reform, New York Times columnist David Brooks — a moderate conservative — named this New Yorker article as the “most influential magazine essay of 2009.”

Titled “The Cost Condundrum,” the essay explores how health care costs twice as much in some areas of the country in ways that can’t be explained by demographics or better health-care outcomes. Written by Atul Gawande, a doctor himself, the central thesis is that some communities simply overutilize health-care services — and it has as much to do with what doctors do or don’t do as any other factor. (In fact, Gawande argues that the central argument of this year’s debate — whether health care should be privately or publicly funded — misses the entire point. It’s not who’s picking up the tab that control the costs, he says; rather, it’s those who order the medical services in the first place.)

I read the piece when it came out last June and reread it again last night, and it’s definitely worth a look for anybody who cares about the subject.

A merry, but queasy, Christmas

December 26, 2009

My first 48-hour chemo treatment ended around noon Christmas Eve, when the folks at the West Michigan Cancer Center disconnected my chemo pump.  But while I was thrilled to get the pump off (you try sleeping with a bulk fanny pack around your waist), it turned out things weren’t quite make to normal yet.  

After sailing through Tuesday and Wednesday with an absolute minimum of side effects, the queasiness and nausea started to sink in Thursday soon after I finished my full dose of meds.  Nothing major, mind you. In fact, it sort of reminded me of the early days of pregnancy — something less than full-blown morning sickness, and more like a delicate  and wary stomach. I didn’t feel like vomiting, but I sure didn’t feel like eating, either.

Still, for Christmas Eve, we went to my sister Colleen’s house, and I picked my way carefully through her taco-bar buffet. Christmas Day was a quiet day at home with the afternoon taken up by Movies on Demand and season four of the “The Wire.” In all, I spent eight shameless hours in front of the television, which was just as well, since my appetite still hadn’t returned.  Thank God for Stouffer’s Grandma’s Chicken and Rice Casserole.

Later today is a big family party at Marcia’s. Feeling a little better, but I doubt I’ll be scarfing down stuffed mushrooms and spicy chicken wings. The upside: No worries this year about holiday weight gain.

A Congressional Christmas gift

December 24, 2009

To my shock, I shed a few tears this mornng on reading the totally expected news that the U.S. Senate had passed the health-care reform bill.

Even before I got sick, I was anxious for reform. In my mind, the status quo is unsustainable on a cost front, if nothing else, and I hear far too many stories of people who fall between the cracks in the present system. A friend of Kevin’s who was diagnosed with a brain tumor in the same month that his father lost his job and his insurance. An uninsured, twenty-something son of an acquaintance who got bitten by a rattlesnake and got socked with a $30,000 bill for the anti-venom treatment. The uninsured young woman who had to declare bankruptcy after an emergency apendectomy. A Facebook friend with a serious heart condition who can’t get affordable insurance.

Our family has terrific insurance right now — thank you, Kalamazoo Gazette — but the kids won’t be on that policy forever, and with the way the newspaper biz is right now, it’s hard to predict that this job and its insurance coverage will be around for another 14 years until I qualify for Medicare. And now with a cancer diagnosis on my record, what would I do if I had to get insurance on my own?

This health-care bill is far from perfect, and the major provisions don’t kick in until 2014. But in my mind, it’s a critical move in the right direction.

Much ado about nothing … so far

December 22, 2009

I was dreading, dreading, dreading today: The First Chemo Threatment.

Tonight, I feel like I was making a big fuss over nothing.

Harold, my chemo buddy for the day, and I showed up at the West Michigan Cancer Center around 8:30. They started by taking my blood to make sure that I wasn’t anemic and that my kidney function was fine. From there, Harold and I went to the chemo lounge, which has a couple dozen lounge chairs and lots of IV equipment. I was paired with a nurse named Wendy. who spent the first hour or so explaining things and having me sign various consent forms.

The worst part was connecting the IV lines to the port installed near my left collarbone last week. Putting in the IV felt like a big thumbtack getting stuck into my chest.  (The port is completely under the skin, but eliminates the need for searching for veins every treatment. And I have bad veins for poking.)

 Once the lines were in place, Wendy first gave me a cocktail of anti-nausea drugs and a mild sedative. About 15 minutes later, she started the actual chemo drugs — Eloxatin, which is the drug that can cause neuropathy, and Leucovoran, which is folic acid along with some other minerials and vitamins. 

That infusion lasted for two hours. Harold brought me a delicious sandwich from the gourmet deli across the street. I read the New York Times and a book on the Enron scandal. I got a free hand massage. I dozed off for about a half hour in my comfy Barcolounger. Honestly, an airline flight in the coach section is far more traumatic than an afternoon in the chemo lounge.

After the two hours of infusing chemo drugs came the final stage, this one involving the main drug, Fluorouracil, or 5FU. I got a shot of that through the IV lines and then I was attached to a pump that I’ll have to wear around my waist for the next 48 hours, with a IV line running under my sweatshirt up to my port. 

I thought the port would be the size of a beeper that I could clip to my waist.  In my dreams. It’s actually inches by four inches by two inches, and I carry it in a fanny pack around my waist. It’s not heavy, but it’s not subtle either. (Kat took one look at the setup and said that she’d  risk cancer before wearing a pump with IV  lines hooked to her chest. Sarah said, more sympathetically, that fanny packs are so out that they’re coming back in. But added that there are definitely cuter fanny packs to be had than the one I’m wearing.)

The pump is definitely a pain — sponge baths only until it comes off Thursday — and I need to figure out a way to sleep with it. By my side? On my nightstand? We’ll see.

But so far, the pump seems to be the biggest annoyance. As of right now, the side effects are minimal. Food tastes different — a little more bitter, a little more flat. My jaw feels a tad stiff (part of the neuropathy syndrome). But no tingling in the hands or feet; no cold sensitivity that I’ve detected yet, (although I haven’t stuck my hand in the freezer or downed ice cream); no nausea or fatigue.

When I got home, I walked the dog, making sure to dress warmly, and I was fine. I also made a fairly elaborate dinner (ham, escalloped sweet potatoes, collard greens) without a problem.

Tomorrow I go back for another three-hour infusion, and on Thursday, there’s a short visit to remove the pump. 

So far, these seems totally doable, a piece of cake. But I’m fully aware is the first day of a three-day treatment, and the start of the first treatment of 12 over the next six months. It is utterly and completely possible that I will feel much crappier in a few hours, a few days, a few weeks or a few months. (I’m told that the cumulative impact of the drugs means the end of chemo feels much worse than the beginning.)

But I’m viewing today as a good omen. I’m trying to do the few things that will boost the effectiveness of the drugs and lessen the side effects — walking four miles a day on a treadmill (I’m heading out to the Y after I finish this post), eating fruits and veggies instead of junk, taking a protein supplement (glutamine) recommended by the doctors.

So far so good.

Bound by our troubles

December 20, 2009

Here’s one of those unexpected consequences of cancer: It’s made me a much better friend to those in my life who are struggling with significant troubles of their own.

I have, for instance, two close friends are struggling with tricky family problems right now; a third who is dealing with some very frustrating work issues, and a fourth who has been diagnosed with an incurable and potentially life-changing  illness. Just this past week, I’ve had intense conversations with all four of these people that focused as much on their issues as on mine.

Talking with them about their various problems helps me in several respects. It distracts me from my own issues. It reminds me that other people have problems, too, and keeps me from veering into self-pity. It also makes sure that our conversations are not just all about me, me, me and my medical travails. After all, they have lots to talk about, too, and I’m genuinely interested — truth be told, I LOVE trying to problem-solving other people’s lives.

I also think that having a cancer-stricken friend helps them put their own problems in perspective, and in at least one case, has encouraged the person to open up a lot more. For some people, I think, it can be hard to confide problems to someone whose life is going well — but when you both have serious problems, there’s a sense of shared empathy.  It creates a much more balanced relationship, and there’s less worry about burdening the other person.  Rather, there’s a sense that we’re both going through a hard time, but we have each other’s back.