battle cries

Again, I surprise myself with what pops into my head while I lie upon the hard, cold radiation table for day two of treatment. In this case, it's the image of a great battle out of The Lord of the Rings or Braveheart. Warriors on horseback, gleaming swords, colorful banners swirl through my head as I think about those radiation beams attacking the enemy cancer cells. "Die, you motherf&%$ers!" I think, brandishing my imaginary sword. Yes, many of my good soldier cells will be lost for the cause. Civilian casualties are inevitable. My body will never be the same. But if it means eliminating the enemy and preserving the good of this humble nation that is my body, I am willing to accept it.

happy morning

At around 6:00 this morning, I heard the familiar sound of the key in the door, the creak of wood on wood as it opened. My heart smiled bigger than it has for days because I knew Steve was home from his three-day business trip. I managed OK while he was gone, though. I missed him a lot, but family and friends made sure someone was with me around the clock — even helping with Ben when he needed to be fed in the middle of the night. It was good for Daniel to spend all that time bonding with his aunts, too.

I know Daniel was happy to see his daddy, too. We'd had a couple of moments in the middle of the night where he woke up and sobbed for him for long minutes before falling back to sleep.

Last night, as he was falling asleep next to me, out of the blue he said, "Mama?"

"Yes, honey," I said.

"I'm sorry," he said in his sweet, clear little sing-song voice. His r's still sound like w's.

My heart just about broke. What does one say? "You don't have to be sorry," I said. "Mommy loves you so much. Daddy loves you, too."

"Mommy sad," he said. "Daddy sad."

He is so sensitive. Just like his mother. (And his father, for that matter.) I hope for his sake that he doesn't take on my tendency to carry the weight of other people's sorrow. But moments like that make me think he may.

He's also very silly. And skinny. See?

day one of radiation

My first day of radiation today went something like this: I walked into the radiation room feeling relatively composed, and when I saw the cast for my legs to lie in (the one they made yesterday to hold me in the same position every time) and the hard table and the big machine that would be used to radiate me, I started to feel knotted up inside. I believe my words to my friend Laura, who accompanied me to my first appointment, were: "I feel like I want to throw up."

The ceiling above the table had a picture of a green park with tulips in bloom around a clear, blue lake. I wished I were there instead of here. Then the big x-ray machine swung up over my head, and I couldn't see the picture anymore. By the time they were ready to get started, tears were streaming down my face. I was as surprised by my reaction as anyone. I kept thinking about my family, about Ben and Daniel and how cute they are, and about the fact that I have cancer and this is the first of many, many toxic things that will be done to try — try — to get rid of the cancer. All that reality just hit me squarely in the face all at once, and I cried all the way through it. The treatment itself didn't hurt. In fact, I didn't feel anything except the hard table against my back.

Afterward, we met with Dr. C., the radiation oncologist, and Dr. A., the resident assisting him. I have to give both of them high marks for compassion. (And they're smart, too!) Dr. A. looks like a young guy himself, and I get the impression he has kids. I imagine him wondering what it would be like if this happened to his wife. When I explained to Dr. C. why I was crying, he was honest. "I don't know how I'd handle it if this happened to me," he admitted. It's the best thing he could have said.

Tomorrow, it won't take so long. I'll be in and out in a matter of minutes. Nine more of these trips, and then I start chemo, and that's when I'll really be crying.

ben at one month

Our serious little guy ... though sometimes I think he's on the verge of smiling at us. He's getting the pudgy cheeks already, too!

words from emily to emilie

Certain things — words, moments, jokes — arrive just when I need them. A friend sent me a beautiful, letterpressed card this week with a stanza from a poem by Emily Dickinson that brought tears to my eyes. Here is the poem.

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune — without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

fear

The dark, mournful figure of Grief has been elbowed to the side of the stage today by stark Fear, who clutches at me with chilly, grey fingers. Or maybe it's the cold rain outside. Today, it's not the sorrow at the thought of dying and leaving my family to cope without me that washes over me; it's the terrifying idea of how much pain and destruction my body is in for as I embark on this course of radiation and chemotherapy. It's the idea of laying waste to my body with drugs that sound like weed killers. Drugs that will give me nausea and mouth sores. Drugs that will rob me of my energy and my white blood cells and my hair.

I dreamed last night that I started chemo without knowing anything about my treatment plan. I just swallowed a couple of big, white pills in the doctor's office and waited to see what would happen. I kept asking for the plan, and a nurse finally handed me a piece of legal pad paper with a hand-written schedule on it. I found out I'd be taking a very toxic double-drug combination every day ... until November. Six months! I freaked out. It turned out the pills were just the less-toxic half of the combo, and I asked if I could just do that one and not the other. In fact, I think I demanded it. I woke up feeling desolate and afraid.

I wore a new, green, cashmere sweater to my appointment with Dr. S. this morning. Somehow, I feel I should be wearing bright, life-filled colors right now, not black. Maybe the rainy day influenced that choice, too. It looks like I'm going to have two weeks of moderate-level radiation on my hip to alleviate some of the pain before starting chemo. So at least I have a little more time to prepare myself emotionally and mentally (if not physically) for what's ahead. Dr. S. said that he would recommend starting me on a combination of Doxil and Ifosfamide, which, indeed, is a fairly toxic combination. Thinking about it makes me want to throw up. It sounds like I could probably just start with Doxil, too (like in my dream); we'll probably discuss it further as we go along.

On the plus side, Dr. S. signed off on the form for me to get a handicapped parking sticker. So at least I've got that going for me. (Well, that, and tons of people who are coming forward, so generously, to help us.)

life chapters

It's so wierd. When I was engaged, I got really into wedding planning. I loved it. I obsessed about it. I visited reception sites with Steve, pondered invitation fonts, researched florists and listened to samples of wedding ceremony music. I joined the chat boards on TheKnot.com and got to know other brides-to-be, a few of whom are still good friends of mine today. Later, when Steve and I began our struggles with infertility, I joined another chat board and got to know other women who were trying to conceive (known in the online world as TTC). Their support and encouragement kept me afloat during some dark times. When I finally got pregnant, my focus shifted again. I got really interested in childbirth, read lots of books about it, and chatted with other women on the TTC board who had become pregnant. And then I became a mother, and I read even more books, joined classes and met yet another group of (mostly) women who have become friends through our weekly play group.

And now I have to start learning about sarcomas. I have to apply all my energy to a subject I never wanted to know anything about (well, who does?), a subject that frightens and depresses me. And yet, here I am, getting cozy with the new reality in my life. All week, I've been discovering new Web sites, getting tips from people who have been there or know people who have been there. Today, I even joined a sarcoma list serve. I can't help wondering if the next group of important people in my life will be those who are facing down the dragon together, with apparent humor, courage and spirit. I am amazed as I read about what people go through in fighting this fight, and I hope I can draw strength from them.

more ways to help

A woman I don't know personally — Mary, a sarcoma survivor who runs the Adult Bone Cancer Survivors Web site — posted a link to this list of ways to help friends who are in treatment. I thought it was worth posting here, as well. (What follows is copied directly from the abc-survivors.net Web site — I hope that's OK, Mary.)

* * *

It is difficult to watch a friend suffer. The good news is, there are things that you can do to help. In fact, your help is needed, whether you are a close friend or a neighbor. Because sarcoma chemotherapy and surgeries are so intense, most patients have difficulty taking care of basic daily needs. Many are under significant financial strain due to medical bills and the inability to work. Your support can make such a difference in your friend's daily life, and can affect his or her level of hope and happiness.

Our members all agree on one point: don't ask how you can help, just DO something! An offer to help is best when it doesn't require the patient to think or choose. Patients can easily feel guilty, as if they are imposing or asking for help. So take the guilt out of a gift by choosing something yourself. Here are some useful gift ideas:

• Give gift cards for restaurants, gasoline, necessities, groceries, or a family outing.

• Offer to bring a meal on a specific night. If there are children in the household, choose something that most kids like, or bring a child-friendly dish and an adult dish.

• Pick up some groceries and drop them by the house.

• Call and offer a few free hours to do some household chores. This is GREATLY appreciated, but patients usually do not feel comfortable asking.

• Offer to keep the children on a specific night so the patient can rest or go out.

• Take pictures when visiting. Be insistent! The photos will be valuable to the patient or family members later.

• Offer to take the patient to treatment on a specific day or week.

• If you are good with finances or insurance issues, offer to help the patient organize medical bills, deal with the insurance company and arrange payments.

• If there are many community members willing to help, become a "volunteer coordinator" by keeping a schedule of visits, meals, and childcare. There is a free online tool to help with this task.

• Offer to start a web page for the patient and update it for friends and family to read online. Two free services are CarePages and Caring Bridge.

• Volunteer to put together a fund-raiser for the family. If you have no expertise in this area, ask other friends for ideas. Once you have a general plan, propose it to the patient for approval. This is a great way for the community to come together and do something that a family would not do for themselves, even if they desperately needed it.

• Hold a sarcoma event (like a local Team Sarcoma) in the patient's honor.

a way to help

A number of you have asked if you can help by bringing a meal over. We would love that. My friend Andrea has offered to organize a schedule to help coordinate meals, and if you'd like to be part of that effort, you can let her know. Here is her e-mail address (with spaces between all the letters and dots to fool the spam spiders, so be sure to remove them):
a m m a m m 9 9 @ g m a i l . c o m

Thank you!

because not everything is about cancer

I've decided that David Cook is my choice for the winner of this season's American Idol. If he can nail a Phantom of the Opera tune almost as well as he did Michael Jackson's Billie Jean (which I watched over and over - such genius), he's a rock star in my book. I predict it will be David Cook and David Archuleta in the final face-off. Last night's show was interesting; Jason Castro's rendition of Memory from Cats just made me burst into sobs. Certain songs just do that to me now. And to Steve, too. (OK, so I guess it sort of is about cancer after all.)

please don't mess with my head

Steve and I are truly overwhelmed and grateful for all the good wishes and prayers that have been left on this blog and in my e-mail inbox. Thank you so much. They mean a great deal to us, and we feel so loved.

I do have to say this, however:

I appreciate your encouragement and your anger. And I also appreciate any research you are doing on my behalf. God knows, I don't have time to do it all myself. But if you have medical input on my case — particularly of the nature that second-guesses my oncologists' advice — please post your name and e-mail address (so I can contact you for further information) and the sources of your information — including links to articles if you have them. Better yet, send me a private e-mail (to the address in my profile) so we can have a real discussion of my medical options.

I really do want to make sure we've examined all avenues of treatment, but I cannot possibly have any credibility with the doctor if I go in saying, "Well, an anonymous tipster on my blog says XYZ might be better than what you're suggesting. What do you think?" Seriously, the suggestions that my doctors don't know what they're doing messes with my head, and I don't need that right now. Dr. T. and Dr. S. are the main sarcoma experts at the University of Minnesota's Cancer Center, which is among the leading research and treatment centers for sarcomas. (On a related note, I will be among the subjects of discussion tomorrow at a "sarcoma conference" being held here in Minneapolis. Dr. S. plans to ask for additional input in my case.)

I do want to fight this with all my might, and I do want to be as well-informed as I can. But please realize that there's not much I can do with anonymous suggestions with no attributions or sources I can pursue. Thank you for your understanding.

it's not good news

Dr. T. did reach me Saturday morning on my cell phone. I was alone with Ben, who was crying hungrily in my arms as I swirled a bottle of breastmilk in a pan of hot water on the stovetop to warm it up. Steve and Daniel had gone to the Children's Museum. I had to ask Dr. T. to wait while I hobbled into the living room, sat down on the couch and started feeding Ben.

"It's not good," he began. In short: The cancer has spread to my hip and my lungs. Yes, that is the reason my hip has been bothering me and not clearing up. All this time I thought it was pregnancy related, and instead it was this horrible, horrible cancer taking up residence in even more of my body.

I know this is an aggressive cancer, and that survival rates go down considerably when there is a recurrence. I didn't have the courage to ask Dr. T. for any quantifiable chances of treatment success, so I just asked if my prognosis was not very good. "It's not very good," he said. By the end of the phonecall, my hand was shaking so much that Ben's bottle slipped out of his mouth and he started crying again.

The next step is to meet with the medical oncologist, Dr. S., on Monday, where we should learn more and find out what's next. Chemo, most likely, Dr. T. said. And maybe they could do some radiation on my hip to relieve some of the pain, he said. He gave me his cell phone number in case Steve or I needed to ask him anything else over the weekend.

I sat on the couch, numb, uncomprehending, wishing Steve were there. Five minutes after I got off the phone, it rang again. It was Liz. She asked me how things were going. "Not good," I said, and started crying. She came right over and stayed with me until Steve got home.

Daniel was asleep when Steve walked through the door with him in his arms. I slipped Daniel's shoes off him, and we walked toward the bedroom to put him down for a nap. "I think I'll take a bath," Steve said. "Actually, we need to talk," I said. "Dr. T. got ahold of me." And as we slipped Daniel onto the bed and out of his jacket, I told him.

And then we cocooned ourselves in our house for the rest of the day and night, not going out or answering the phone. What followed — the words shared, the brokenhearted tears shed, the gestures of love exchanged, the precious innocence of our beloved children — I will leave to your imaginations.

* * *

Addendum: Monday afternoon. I can barely write about this right now. The oncologist today used the words: "probably not curable." So anything we are doing right now is a matter of buying time. I have a PET scan tomorrow and probably start chemotherapy next week.

Child care. We're going to need it more than ever. Thanks to those who volunteered before. I may be calling you.

And I'm probably going to have to wean Ben from breastfeeding in the next day or so, which is a heartbreak in itself. I can't do it for something like four days after the PET scan, and not during chemo, either.

Last night I popped a pacifier in his mouth for the first time when he was having trouble falling asleep. I thought, what the heck ... it's not like we need to avoid nipple confusion now. That's going to be the least of this sweet boy's worries.

I need to believe that a miracle is possible right now. At the same time, I need to face reality and prepare myself and my family for the worst outcome. Our poor boys. My heart is breaking a million times a day, and so is Steve's. It's so unfair.

If there is a bright side to any of this, it's that the unimportant, superficial things in our lives have suddenly fallen away, and we are intensely focused on what remains truly important, which is each other, our family, and making the most of the time we have together now. "It feels like we just met again," Steve said. Like we're falling in love all over again.

* * *

Excuse my lack of pants, but we had this totally wonderful family moment on the bed last night, and Steve ran and grabbed the camera. We've been doing that a lot lately ... documenting things.


Daniel loves to rest his head on Ben and "hug" him, especially when he's crying. He's really good at empathizing and anticipating Ben's needs. "Baby sad," he says. "Baby eat booby." "Mommy sad."

sorry i missed you

The results hadn't been read by a radiologist by the time I got to my appointment with Dr. T. He said he didn't see anything out of the ordinary in my abdominal area — not with his untrained eye, anyway — but he'd call this afternoon when he got official results.

So this afternoon, he calls. 5:20 p.m. But our f&*%ing phone is broken. We can't hear it ring, and we only know there's a call coming in when the answering machine picks up the message. Then we call back using my cell phone. Only, Dr. T. didn't leave a call-back number. He just said, "This is Dr. T. Sorry I missed you. I'm calling to discuss your CT scan results." That was it.

Sorry I missed you.

And now I have to wait all weekend.

There hasn't been any *bad* news today, so why am I so numb and drained and depressed? Because today, again, I was "the cancer patient." I've had to stare down that dragon, that part of my identity I am loathe to embrace.

Dr. T. seemed most concerned about my hip, of all things, and wanted to make sure we get it checked out, to make sure there's no connection between the hip problem and the cancer or the surgery. Of course, now, every time I feel it twinge and ache, I wonder anew. ... He also wants me to see a medical oncologist (he's a surgical oncologist) for a second opinion about whether I need to follow up the surgery with radiation or chemo. I don't see the need for it if my scans are clear, and he didn't think it was warranted while I was pregnant. But Dr. T. thinks it would be a good idea to get that second opinion. So now I have an appointment set up for May 7 with one Dr. S., whose office is across the hall from Dr. T., and who handles pretty much all the sarcoma cases in the area.

On the plus side, Ben is doing really well with the bottle feeding!

Steve and I (and Ben) stopped for lunch at Blondie's on the way home, and Ben slept the whole time in his car seat, and it felt almost like we were on a date. It was nice. And the carrot cake was to die for.

waiting with a stomach full of dye

So the imaging center that's doing my CT scan today called yesterday to "remind" me that because I'll be having a contrast dye injected intravenously, I need to remember not to breastfeed for 24 hours afterward. Only this was the first I'd heard I was having an IV dye. (And I hate IVs.) I already had an oral dye solution in the refrigerator, which was going to keep me from nursing for about six hours today, along with a stock of pumped breastmilk that I figured would get Ben through the day. I had not, however, pumped enough for 24 hours or more. This news, along with the whole idea of having my entire internal frame lit up with various dyes, did me in emotionally, so I broke down yet again yesterday afternoon. Maybe it's best that I had my big cry then, rather than, say, now, as I sit here waiting, feeling my stomach churn with nervousness and/or with the half-bottle of the berry-flavored oral dye solution that I just drank. (I'll drink the other half at 10:30.) Everyone around me is being so positive — Steve, my mom, friends — telling me they have a good feeling about the outcome of today's appointment. I am letting them do the positive thinking for me because I myself am just plain nerved out about it.

So I pumped two more times yesterday and this morning and managed to eke out another six ounces or so of milk, and I hope all this will tide Ben over until I can nurse him again. Dr. Sears says babies this age should get about two ounces for each pound they weigh, which means Ben will need roughly 16 ounces of milk. (That's the formula for formula feeding, though. I don't know if the same amounts apply to breastmilk.) I hope Ben will take to a bottle. And I hope the old Medela bottles will work OK for him because that's all we have right now. Long story, which I won't go into here.

I went to the physical therapist again yesterday, and (in short) she said my hip is a lot worse than last time she saw me in February, and it's high time I get some tests done so we can see what's going on. My chiropractor has already faxed an add-on order to my CT scan to have them look at my lower back while they're at it to see if there's any disc herniation going on. So I hope we get some answers about that, too.

Thanks for all your good wishes, thoughts, vibes and prayers.

my flavor of the month

So Steve and I watched Atonement a couple of weeks ago — great movie, though very sad — and last night, Mom and I watched Becoming Jane (about Jane Austen's real-life love affair with Thomas Lefroy). Both movies star James McAvoy, one of the new, young stars out of Britain. Dreamy! And now I have a little crush ...


I was just Googling his name to find these photos, and lo and behold I also find out he played Tumnus the faun in The Lion, the Witch and the Wardrobe. Cuteness!

mom, blues, babysitters, boobies

My mom is here from Oregon for a week, and I couldn't be happier to have her here. Our house is clean and tidy, Daniel (who has warmed up to her much more quickly than he did in September) is getting some quality outdoor time, and I appreciate the company and extra pair of hands.


Speaking of hands, doesn't Daniel's look huge here?


I am thinking about hiring a nanny, babysitter or post-partum doula of some sort to help me out for a while when Mom leaves. Steve has a business trip in a few weeks, which makes me very nervous. But it's not just the trip; I'd just like some help in general. The first few days of him being back at work last week (before Mom arrived) were challenging, though not as tough as I anticipated in some ways. I didn't end the day shellshocked like I did with Daniel, maybe because I have a little experience with infants now, and maybe because Ben is an entirely different sort of baby. Daniel was constantly fussy and rarely slept. Ben sleeps a lot, and he seems less fussy when he's awake. Last night, he slept from 9:30 p.m. to 5:30 a.m., I kid you not. I woke up several times with leaky breasts wondering whether I should wake him. But the night before had been tougher; he was up every couple of hours, and I spent yesterday morning in a teary state of post-partum blues (or Monday blues), feeling like I couldn't cope with anything.

On the plus side, some women from a mom's group are bringing us meals twice a week, and that's been wonderful. And Daniel is so sweet with his brother. He likes to put his head down on Ben's chest and lean in for "hugs." And he's getting better at being gentle around his face. He likes to watch me feed him, too — and he's taken a newfound interest in my breasts (which he knows only as "boobies" — thanks, Steve!). Last night, he saw me in the tub, and he leaned over, put his mouth very close to one of them, and pretended to "drink some milk." When he was done, he smacked his lips and said, "Aaah!"


At any rate, some days are better than others, and they'd all be better if I could walk freely without my cane. As it is, this hip stuff feels like a big, cruel joke. Here it is springtime, and I'm not pregnant anymore — my body should be my own. I should be taking the boys on long walks in the stroller, cavorting in the park in the sunshine! But walking long distances is super-painful, and I can't carry anything (or anyone) heavy, which means I feel sequestered indoors most of the time. Where's the empowerment superhero when I need her?! I have got to find some things I can do in spite of this. Here's one: I can put Ben in a sling and take Daniel out in the yard. We've made that expedition once. It went OK, except when Daniel refused to come back inside and I tried to lift him, and I triggered a raw nerve or something that is part of this hip issue and almost dropped him. Maybe we'll try it again next week.

Which is why I'd like to have some part-time help, like I said above — and if any of you know of someone who might do a good job, or if you have ideas for finding a babysitter that don't involve Craig's List, please let me know!

... and speaking of wrong

What was WCCO thinking in laying off chief meteorologist Paul Douglas? What an insane and stupid decision. He was one of the main reasons I even watched WCCO in the first place. Dumb, dumb, dumb move. He was on TPT's Almanac tonight, and it sounded like the past couple of weeks have been pretty tough for him, emotionally, but he's choosing to view it as purely a "business decision," nothing personal. Just a casualty of the belt-tightening going on all around the media. So he's taking the high road. I hope he moves on to better opportunities, and I'm sure he will — he's smart, and from all I hear, he's a good businessman.

There were layoffs at Steve's job this week, too. I'm thankful Steve's position seems safe, but it sounds like morale has been pretty low as a result.

wrong ... just wrong

Why did America vote Michael Johns off American Idol? He was one of the best contestants of the season, and definitely one of my favorites. Sometimes this show gets me so worked up!

it's nice to be lucid (and other random thoughts)

One advantage of not having a c-section: You don't have to spend your first post-partum week(s) on narcotic painkillers. I've definitely noticed the difference in mental clarity. After Daniel was born, I remember standing in the shower, the hot water running over me, thinking — swearing — that I could hear a baby wailing in the background. I'd turn off the shower and call to Steve, asking if everything was OK, and he'd tell me Daniel was sound asleep. I'd turn the shower back on and hear the wailing again. Just a trick of the water. That doesn't happen to me this time.

Two weeks. Has it really gone by so quickly? Steve goes back to work tomorrow, and that will be the greatest challenge so far. If Sunday's trial run is any indication, it's going to be hard for Daniel, too. Those two are so bonded — Daniel clings to his dad so much these days — that I fear their separation will be very stressful. How much does Daniel love his daddy? Let me count the ways: When he wakes up in the middle of the night, he calls out, "Daddy, daddy!" When Steve goes to the bathroom or empties the trash, Daniel wails, "Daddy, daddy!" until Steve lets him into the bathroom or comes back inside. And Sunday, when Steve left for an hour to run an errand, Daniel stood by the front door or the front window, crying, "See Daddy. Daddy soon." He was sobbing so hard that I could not console him, although finally I was able to put Ben down and pick him up, and that helped a little. Thanks to me, Daniel even knows his daddy's other name, and if he doesn't get his attention with "Daddy, daddy," sometimes he switches to "Steve, Steve." Am I going to be able to fill the void left when Steve goes back to work?

I wish I knew when my hip will heal up. The midwife says it could be weeks, given that the relaxin hormone that caused the loose joint problems in the first place is still in my body and might stay there longer because I'm breastfeeding. My chiropractor seemed surprised yesterday that I wasn't feeling better yet. I haven't been back to the physical therapist — she's just too far away, and I don't have time — though I might try to find a closer one. Having to use my cane to get around definitely hampers my mobility, and I fear it also will hamper my ability to care for Daniel and Ben at the same time.

Among the Pulitzer Prize winners announced yesterday, I was especially interested in the winning feature article from the Washington Post. It was about the reaction (or lack thereof) communters had when acclaimed violinist Joshua Bell busked in a D.C. subway station. Few people realized they were in the presence of one of the world's top violinists; and he earned just $30 after playing for about 40 minutes. It was an interesting experiment. Steve and I became Joshua Bell fans when he was a guest conductor for a few concerts each year with the St. Paul Chamber Orchestra. His stint ended last spring, and we went to see him on his farewell weekend. It was an amazing concert, just like all the shows he did. He plays with passion and abandon, and he usually breaks a few bow hairs in the process. We'd watch them fly around as he played, oblivious to them until the end of the movement, when he'd calmly break them off.

retroperitoneal sarcoma

I typed my cancer into the Medscape search engine and found a long article that just about makes me want to throw up, or cry, or both. I can't process it enough to be able to write about it, so here are some snippets. I need to go lie down now next to my napping husband and try not to think the worst.

Soft tissue sarcomas are rare, with approximately 8,600 new cases diagnosed annually in the United States -- less than 1% of all newly diagnosed malignancies. ... The rarity of retroperitoneal sarcomas, combined with the vast array of histologic subtypes, has complicated our understanding of these tumors and impeded the development of effective therapies.

Approximately half of retroperitoneal sarcomas are high-grade tumors.

Tumor size has not been identified as a predictor of survival since virtually all retroperitoneal sarcomas are larger than 5 cm at presentation. Tumor grade has been reported as a significant factor in some studies, with the weight of evidence supporting shorter recurrence-free and overall survival for patients with high-grade tumors.

Sarcomas that arise in the retroperitoneum most commonly present as an abdominal mass, often without other symptoms. ... In most cases, retroperitoneal sarcomas smaller than 5 cm are rarely seen since they usually are not noted by the patient until they are larger in size. When symptoms are present, they relate to the mass effect of the tumor or to local invasion. Early satiety, gastrointestinal obstruction or bleeding, lower extremity swelling, or pain are among the first symptoms leading to the discovery of a retroperitoneal sarcoma.

Retroperitoneal soft tissue sarcomas present challenges that distinguish them from the more common soft tissue sarcomas of the extremities. ... While the most common site of first recurrence for patients with extremity sarcomas is a distant site, patients with retroperitoneal sarcomas are more likely to develop recurrences within the abdominal cavity. The overall survival for patients with extremity sarcomas is superior to that of patients with retroperitoneal sarcomas. ... Local failure continues to occur beyond 5 and 10 years following resection, leading some to estimate that the long-term recurrence rate for resectable retroperitoneal sarcomas exceeds 70%.

As with primary sarcomas of the extremities, surgery is the treatment standard for retroperitoneal sarcomas. ... In most reports, complete excision is achieved less than 70% of the time, with local recurrence occurring in approximately half of patients undergoing complete resection. ... A retroperitoneal mass should not be surgically treated unless the surgeon is prepared for the magnitude of the resection that may be required.

Many studies have shown that a significant number of patients experience prolonged disease-free survival when all grossly evident recurrent disease can be resected. The addition of chemotherapy or radiation in the treatment of locally recurrent disease remains the subject of debate.

Following resection of one recurrence, subsequent recurrences have progressively diminishing chances of being successfully resected.

Compared with patients with extremity soft tissue sarcomas, those with retroperitoneal sarcomas have a greater tendency for local recurrence and disseminated disease throughout the abdomen. Potter et al reported that 80% of recurrences occur within 5 years.

Conclusions

The evaluation and treatment of retroperitoneal soft tissue sarcomas remain challenging. The most important factor in the long-term success in the treatment of primary tumors is complete surgical resection. It is important that patients with these tumors be evaluated and treated at centers with multidisciplinary treatment planning and expertise in treating these rare tumors. These centers also can invest time and resources into investigations of novel therapies and have access to clinical trials. Local recurrence remains a difficult problem, with increased associated morbidity and psychological stress for affected patients. We hope that with improved education, early referral of patients with retroperitoneal soft tissue tumors will become the norm, and patients will derive the benefits of multidisciplinary evaluation and treatment of their disease.

— "Retroperitoneal Sarcomas," by T. Christopher Windham, MD; Peter W. T. Pisters, MD, from Cancer Control: Journal of the Moffitt Cancer Center, posted 02/28/2005

oooooh, nice

Daniel has learned to put his shoes on by himself, and that sometimes makes for unusual outfit combinations. Steve took this photo of him the other morning. Those are his PJs under the snow boots. And he loves to wear his hat around the house. Whenever he pulls it on his head, he says (in imitation of us), "Oooh, nice!"

facing the dragon

Well, I did it. It took me the better part of a week to work up the courage and organize my myriad thoughts and fears into intelligent questions, but yesterday I finally made the phone call and scheduled my follow-up visit with my oncologist. I'll be having a CT scan the same day — Friday, April 18. Two weeks from today. This is the appointment where I will learn the success of last September's surgery, where the doctor will tell me whether I am cancer-free. I'll have to repeat it every four months for the next five years. I can't tell you how scary and nervewracking this is. How scared and nervous I am. Steve is scared too, but also optimistic. He has such faith that our doctor got the tumor out completely and that if anything new crops up, we'll catch it early this time instead of letting it go for five-some years (which is how long the doctor said the old tumor had been inside me).

This week of bonding with Ben and watching Daniel adjust to brotherhood has been for the most part happy. In fact, there are oxytocin-fueled moments when I feel as if I've never been happier and more content in my life. But around the edges, there are tinges of bittersweet when I think about the possible outcomes of my health. I wish I didn't have to imagine the possibilities. I wish I didn't have to wonder if the sweet, fragile newborn in my arms, with whom I have completely fallen in love, will grow up knowing his mother, or if my sons will inherit whatever freak characteristic or gene that caused my cancer. I'm sorry to sound so maudlin. I don't think it's healthy, and whenever I catch myself doing it, I try to balance it by visualizing the most wonderful outcome: having a clean CT scan, having the doctor tell me I'm in the clear. Oh, what a happy day that would be!

I am not yet ready to type the words of my diagnosis into Google's search bar and discover what information exists about my particular sarcoma. That will be my next step. I've avoided it all fall and winter, preferring to focus on my pregnancy. But at some point, I have to start learning about this scary, ugly part of my life. I just hope it provides empowerment and not more fear. Please, God.

A man I knew in an early job out of college used to ask me about my plans and counsel me from the perspective of one who was older and wiser. (He was probably younger than I am right now, and something of a player at that — I'm sure his attention may have been partly flirtation!) He once handed me a slip of blue memo paper with a quote he had written down for me. It was something along the lines of this idea: There's no better way to slay a dragon than to walk up to it and shove a spear down its throat. I have no idea where it's from, who said it, or even the correct words of the original quotation. I carried that blue slip of paper in my purse for years. I don't know where it is now, but I'm sure I still have it, sitting in a shoebox somewhere in storage. It comes to mind as an image for staying strong as I prepare to face my prognosis.

sugar to mask the pain

There is a one-pound box of chocolate truffles from Regina's on our living room table right now. I needed something to soothe myself after Ben's circumcision today, so I asked Steve to stop and buy me a box. (He owed me because he ate practically the entire box that my friend Anne gave me in the hospital. Boy, was that a scene — I burst into tears when I discovered the empty box in the kitchen trash!) It's ironic. For the circumcision, I spent the entire time dipping a cotton swab soaked with sugar water in Ben's mouth. Now it's me who's stuffing my face with sweets.

Benjamin cried through most of the circumcision, and that was heart-wrenching. Then he nursed and nursed and fell asleep until the doctor came back an hour later to check his handiwork. I had my big cry about it last night. (I would have just as soon left our sons intact to avoid causing them any pain, but Steve felt strongly about it, so I deferred to him on the decision, which was made both times after weighing the pros and cons.) But it wasn't as traumatic for me as Daniel's circumcision was. I learned my lesson then: Don't watch. I kept my eyes squarely fixed on Ben's face and the sugar water, and I didn't let them stray downward to his penis, where with Daniel I saw too much of what was happening.

Ben's sleeping in my lap now, and I hope he heals up quickly and forgets that any of this ever happened.