lemmondrops

Emilie’s Passing

2008-12-24T13:19:00.003-06:00

Emile passed away in her sleep last night. I was holding her hand as she faded away. I loved her and will miss hear dearly, but I am happy to see her free of the pain and suffering. The services will be at the Basilica of St Mary on Monday, December 29th. Visitation is at 11:00 AM and mass will follow at Noon. Emile wanted me to share the following quote after she died.

"And did you get what
you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself
beloved on the earth."

— Raymond Carver

Post by Stephen Lemmons

the next ... and probably last ... chapter in my life

2008-12-19T12:12:00.005-06:00

I have put this post off for a couple of days because there were important family and friends who needed to know first. And honestly, as Steve and I process the latest news, me all looped up on narcotics pain-killers, I have been at a loss for how I will write about it here.

So here it is: As of yesterday, I am officially in home hospice care. It is time for me to start preparing to die. It's so surreal. We're still trying to work through the many emotions that come from this news — sadness, fear, worry that I won't get everything done in time. And yet, there's also a sense that this final part of my journey might perhaps be one of the most amazing and spiritual times of my life.

Dr. S said the tumors in my right lung look worse — that "most of my right lung is occupied by tumor and liquid associated by the tumor." The tumors have also pushed my liver inward quite a bit. He said he didn't think any more could be done with chemo or surgery or radiation, and in the end, I think both he, Steve and me were on the same page.

Home hospice has already come in and set up a hospital bed in our room that makes my sleeping much more comfortable. In fact, I'm floored by the helpful, compassionate attitude that comes with this program. I never wanted to die in the hospital, and hospice will enable me to die surrounded by my loved ones in my home. Steve has always supported me in this, and I am so grateful.

I'll write more later. Right now, I need to go rest. Meanwhile, I will leave you with the link to my latest Catholic Spirit column, which came out in yesterday's issue. It's what's been on my mind for the past week and a half, and had I not written about it for the Spirit, I'd have spent quite a bit of time reflecting on it here. Enjoy.

more lung trouble

2008-12-16T13:20:00.002-06:00

I spent most of yesterday at the doctor's and the outpatient section of the hospital. It turns out I have more fluid in my right lung (more than last time), which means more collapsed lung, which explains my breathlessness and pain in my chest and back.

Unfortunately, the fluid is compartmentalized into different pockets of my lung. The doctor originally wanted to drain a little over a liter, but he ended up getting just about a third of a liter. He wasn't sure what to do about the other sections, as the consistency of the fluid was unusual.

So I did get to go home last night (after a PET-CT scan which was already scheduled). I don't feel a whole lot better, but I see Dr. S. tomorrow, and maybe we'll learn more.

a small miracle

2008-12-14T09:09:00.004-06:00

Last night around midnight, I was lying in bed on my back, groggy with Vicodin, trying to fall asleep. Suddenly, in my right lung, I felt a strange little flutter, like a bubble had burst. And then ... a rush of cool air filling the lower part of my lung, the part that has barely been working, keeping me from being able to breathe deeply.

I slowly inhaled and realized that I could take a very deep breath with no pain. I lay there for 20 minutes or so, just breathing deeply and wondering what on earth had happened. Was it my acupuncture session yesterday, where she focused on my lungs and my breathing? The acupressure point around my sternum that I'd been rubbing all day? Strangely enough, in my groggy state, the first thought that popped into my mind was, "It's the collective power of all those prayers out there!" (So thank you.)

This morning, my breathing is as deep as ever. I still have the cough and get winded easily, but I'm not quite so breathless. Unfortunately, though, I am more lightheaded than ever. I am worried about that. Maybe it's my low hemoglobin level? And this morning, when I'm sitting up, there are parts of my back and shoulder that do hurt when I take big breaths. But I'm still buoyantly amazed that my lungs have decided to give me full access to air for the first time since the hospital. That is something!

how am i doing?

2008-12-12T21:28:00.016-06:00

It's easy, when people ask, to say, "Fine," or "OK," or "Not too bad," and I suppose in social situations, those responses have to do. But in a nutshell, I'm really not doing all that well. I haven't been since I got home from the hospital.

I have had many moments of resentment, bitterness, hopelessness, anger, negativity. When I mentioned this to Dr. S., his response was to offer to prescribe me antidepressants. It's such a medical response — more pills. "There's no reason you shouldn't be as happy as you can be," Dr. S. said in his always-calm voice, and I had to say, "Are you kidding? Can't you understand why a person in my situation right now might not be happy?" He just repeated the offer of antidepressants. I'd rather not go there for now. But I do think some counseling might be helpful. (Edited to explain: I am not opposed to antidepressants when they are the most appropriate treatment for depression, such as when it's clear there is a brain chemistry imbalance; but first I'd like to explore the possibility that my current frame of mind is situational, based on specific circumstances that I might be able to work through in therapy.)

My right lung is not working very well, after what it went through at the hospital, and my breath is really shallow and fast. I get winded at the slightest activity — coughing hard, walking across a room, turning over in bed. The right side of my back aches so much that I have trouble falling asleep. I have a nagging, persistent cough that is triggered just by my breathing and sometimes takes the breath out of me. These breathing problems seem to be getting worse, but I'm scared to call the doctor about them because I'm afraid I'll have to go back to the hospital. Even if that's for the best.

My hemoglobin level is borderline anemic, which may be one reason I'm so tired and lightheaded all the time.

I have a PET and CT scan on Monday, and while it would be officially great to learn that the last round of chemo worked, part of me secretly hopes it shows it didn't work because then I won't have to do another round of it. It was so hard, so toxic. I am still not over it, and it was three weeks ago. I don't have much of an appetite, and certain foods just don't appeal to me anymore. The next round is scheduled for next week, but I don't want to do it before Christmas. I think Dr. S. will let me postpone it. But ...

I'm hitting a wall in general when it comes to chemo. I just don't know how much more I can take. I am not a person who associates chemo with positive, tumor-killing thoughts. I saw it described in a recent newspaper article as "the scorched earth policy," and that rings true for me. I've had seven rounds of poison, and so far, it's only had minimal success. Stopping growth (or shrinking it, in one case) for a round or two but ultimately letting more new tumors slip through — tumors that are resistant to that particular form of chemo, so on with the next cocktail.

If this round is found not to have worked, the next option is Sutent, a pill form of chemo. It's been on the market for about two years, originally approved after showing success with gastro-intestinal cancers. I don't know how much success it's had with sarcomas. Meanwhile, it sounds pretty toxic. Can I handle it?

I have had moments when I just want to stop all treatment and lie down and let nature take its course.

And of course, that makes me feel like a bad mother, a bad wife. Who would willingly give up on her family like that?

But then I watch a silly-sweet movie like The Holiday, where Jude Law is a widower with two young girls, and he finds love with Cameron Diaz after thinking he'll never find love again, and it gives me this naive hope that maybe things will work out without me, that maybe I don't need to be so resistant to dying, if that's what the cards hold for me.

And I think about Matt Logelin, a flesh-and-blood widower, not some movie character, who is suffering so greatly but also surviving and, in some ways, perhaps even flourishing nearly nine months after his wife died, the day after giving birth to their daughter Madeline.

So, is it OK to give myself permission to die? Or should I keep on letting chemo drugs weaken me and make me miserable — but maybe buy some more time, maybe (though I'm doubting the odds) work a miracle? Or should I find some middle ground and take a break for a while with the intention of starting chemo again later? It's a question I really struggle with.

• • •

But I can't let the title question go without mentioning some of the things that bring me light.

Unexpected gifts, letters and cards from friends. And visits.

Hot baths, now entirely unencumbered.

I'm done with my antibiotics, and the infection seems to be gone.

My hair is still coming in. It's more than an inch long now! I actually washed it yesterday!

Books like Kitchen Table Wisdom by Rachel Naomi Remen and When Things Fall Apart by Pema Chodron, which help me delve into my suffering and negativity without judgment.

People in the medical community who actually show a human side, who look at me in the eyes and ask me how I'm doing — like they really mean it. And don't offer pills to address every concern.

A woman who comes over a couple of evenings a week to help out (play) with the boys and offer moral support, which enables Steve and me to do other errands around the house. She started out as a stranger and now is a friend, almost a surrogate grandmother to the boys. She brings cookie dough for me to make cookies with Daniel. On days when I'm feeling like a bad mother, she gives me hugs and tells me how sweet and wonderful they are, and how much she loves being with them.

My sister-in-law Sue, who takes time out of her busy family life and comes over every Monday to help me with the boys. We pay a nanny for that four days a week; Sue does it from the goodness of her heart. Her day has become so important to us, and the boys love her.

The fact that so many women I know are having babies soon. For some reason, this gives me such a sense of joy. It's a reminder of the full circle of life.

Acupuncture — the compassionate woman who administers it and the spiritual strength it gives me.

Our latest home-improvement project: a new, ultra-quiet bathroom ceiling fan and some new, professionally installed attic insulation to keep our house a bit warmer (done in tandem). Sounds super-sexy, doesn't it?

Small steps toward decorating the house for Christmas, and seeing Daniel's excitement over it.

And of course, the sweetness of the boys, and the incredible love and support of Steve, who is going out of his way to try to understand where I am these days and to give me all the space (or hugs and kisses) I need. Sometimes he just looks at me out of the blue, seeing something in me that I'm not seeing, and says, "I love you." I really was blessed with a wonderful family.

Oh — and I've been wearing this hat around in the past few days, so some part of me must be feeling feisty and fightin'. Right?

cool stuff

2008-12-12T11:57:00.007-06:00

• Snow in New Orleans — wow! Check out a couple of cool pictures on Ray Mikell's blog. He's the friend who sent me a couple of funky wigs last summer.

• If you've been following Matt Logelin's blog, you may have done the math and figured out that his adorable daughter Madeline is just two days older than our Benjamin. And now she's standing! Way to go, Madeline! (No pressure, Ben.) But that's not the real reason to check out his latest post. I'm just so impressed at how people who are strangers to each other have come together to fund this worthwhile charity in memory of Matt's wife, Liz (who died completely unexpectedly the day after Madeline was born, if you haven't been following his story).

i'm free

2008-12-10T18:45:00.006-06:00

A nurse from Fairview Home Infusion pulled my PICC line out of my arm today, so for the first time in nearly six months, I have no catheters or any type of tube or device hanging from my body. I can submerge myself completely in water. I can take a shower without having to cover part of my body with protective plastic and tape. I don't have to inject heparin into my lines every day to keep them from clogging. I can take Benjamin into the bathtub with me again!

I wasn't originally going to have it pulled. The dressing covering it had come loose overnight and had to be replaced. While I was rummaging around for some supplies, the nurse noticed that the tube had slipped out a few centimeters. (I had failed to press it against my skin after he took the adhesive off.) That pretty much decided it. "Just take it out," I said. We called my oncologist's office to make sure it was OK, then pulled it. I didn't feel a thing.

Yes, this means I'll get extra pokes for IVs and blood draws, and I may have to get another PICC line if I have another round of chemo soon. But Merry Christmas to me ... this feels good.

ben, this morning

2008-12-05T12:09:00.002-06:00

Just because.

presenting the incredible mr. d

2008-12-03T17:22:00.001-06:00

laughter and strength

2008-12-01T21:29:00.010-06:00

A couple of people have directed my attention to a book of cartoons entitled Cancer Made Me a Shallower Person: A Memoir in Comics, by Miriam Engelberg, who died of breast cancer in 2006. The title alone makes me smile, and the cartoons (at least the ones I've seen here) make me positively cackle.

In a week when a positive attitude has seemed as far out of reach as the moon, it's heartening to see someone poke fun at the tendency people have to describe their cancerous loved ones as being so "full of life." A caption showing two people standing over a coffin reads, "You'll never hear these comments at a funeral ... 'I still can't believe it. She was so blasé about life!' 'I never met a more lackluster person!'"

I wonder if she skewers the whole notion that cancer survivors are somehow stronger than the rest of us. That one gets me sometimes, when people tell me, "You're so strong. You'll get through this because you're strong." Well, no. I am not strong. I cry over my breakfast cereal like the weakest ninny. I feel sorry for myself. On bad chemo days, I spend nearly full days in bed sometimes. I alternate between hating God, not believing in God, hoping God can carry me through this and shamelessly begging God to let me live. I do what I do because I have no choice in the matter, and so would anyone else. I get through the day not because I am especially strong but because there is nothing else I can do.

Do I draw upon reserves of strength that most people don't have to tap? Maybe. But I think of other people who have undergone tremendous ordeals in their lives: losing a sibling, losing parents, losing a child, having one or more miscarriages, not being able to have a baby at all, having multiple sclerosis, having a marriage fail, having no luck finding love, struggling with depression or alcoholism, losing a home or a family in the midst of war. I think of what Steve is going through as he watches me try to cope and contemplates a life without me. Everyone bears crosses. Everyone has to summon up some extra strength sometimes. My ability to endure this cancer does not make me any more remarkable than the next person. I am just someone who is sick and trying not to let it beat me down, even if some days it does feel like it's beating me. If strength is trying to live my life in spite of how much I hate what's happening to my body, then maybe I'm strong. But I happen to think the will to live is part of the human condition. If I'm strong, everyone is strong.

I have to admit, though, being able to laugh at something as nasty and unfunny as cancer makes me feel a little stronger. So I'm definitely going to add this book to my list.

(Edited to add: There have been some interesting comments here, so if anyone wants to continue this discussion in the comments section, please feel free.)

black friday black

2008-11-29T09:27:00.005-06:00

I usually try to avoid the shopping crowds on Black Friday, and yesterday was no exception. (It was all I could do to drag myself to a doctor's appointment, even with someone else driving.) But I did spend $19.99 plus shipping on Amazon. I've got a little thrill of excitement about this purchase: a black photo backdrop. I was thinking I'd try to take Christmas photos of the boys this year for Christmas cards, and I wanted to try both white and black backgrounds. A bedsheet should do the trick for white, but I didn't have anything black (like a tablecloth or curtain). This muslin sheet was originally priced at $150, so either I'm getting a really good deal or I'm getting ... well ... $19.99 worth of cloth.

Now, if I can just get the boys in the mood for an onslaught of photos. They don't have to worry about me wrapping tinsel or Christmas lights around them. They won't be wearing matching Santa hats or clever little red satin suits. I'll just be glad if I can get something decent in time to order cards — which may be harder than I think, given my sluggish energy level at the moment. But I think it will be fun, so I'm looking forward to it. And that says something, considering the downward spiral I've been on this week.

thanksgiving day

2008-11-27T21:34:00.005-06:00

Today was a hard day, I won't lie. It was so nice to be with Steve's big family and watch them play with Daniel and Ben, and my appetite is back enough that I could eat some of the food on my plate. But just going anywhere, being up for that amount of time, is physically and emotionally draining. There are moments when the world starts to spin around me and I can barely pay attention to what's going on around me.

But I did laugh today: I didn't recognize my beautiful, teen-age niece because she'd changed her hair and just ... well, looked so different. So I was sitting across the table from her, making a feather hat out of construction paper, and I figured she was the family friend my sister-in-law Sue had mentioned might be coming. I said, "Hi, I'm Emilie. I think we've met before." She just smiled, bless her heart. What do you say when a brain-addled aunt introduces herself to you like you haven't seen each other at every family gathering and had dozens of conversations? Later, when I realized who she was, I was so embarrassed that all I could do was laugh. It felt good. I haven't laughed like that in quite a while.

But then I go back to a place that feels dark and lonely. I have been having trouble shaking it since my hospital stay. I wonder if there's such a thing as post-traumatic stress disorder for hospitals: I have flashbacks of the lack of privacy, the nurses who wake me up to check my vital signs, the people from the lab who come to draw blood like vampires first thing in the morning, the long gurney rides through the cold hospital corridors on my way to have a needle stuck into my lung or my chest, the loss of control over everything. It keeps me awake at night, and my dreams are fraught with IV lines and the vampires from the Twilight series. It was horrible, and I wish I could reassure myself that I won't ever have to go back, but the fact is, I might have to go back. That is the nature of this illness. And it seems to be on a downhill slide, at least for now. And that petrifies me.

And we get home, and I find a piece of mail I didn't see yesterday, and I open it, and it is a card and a prayer from a priest friend. It has exactly the right words, words that give me hope that maybe I can pull myself out of this place.

I escape tonight, partly, by watching Daniel become enchanted by The Sound of Music. From the opening shots of the majestic, snow-covered Alps — "I could climb up those!" — to the poignant strains of Edelweiss sung on the stage the night the Von Trapp family flees Austria, he loves it. (Meanwhile, I am a teary-eyed wreck. Oh, the nostalgia!) He just doesn't like it if there's too long a break in the music. "I want more songs," he says during plot-building bits of dialogue. And good thing for him, The Sound of Music has plenty of songs! I'd love to find some more old movies he might appreciate, even at the tender age of 2. We already have Mary Poppins. Any more ideas?

sex at the ball game

2008-11-27T09:51:00.005-06:00

While I'm writing about news items, did you hear about the man and woman who got caught having sex in a public restroom at the Minnesota-Iowa game?

The latest is that this woman — who is 38 and married — says she has no memory of the event because she'd drunk too much wine before the game. She didn't know the man in question. I am trying to imagine the chain of events that must have led her and a stranger 12 years her junior to get it on in a restroom stall, loudly enough that people gathered outside the door to cheer them on. If it had happened at a private party or fraternity back room, she'd have had to nurse the dirty little secret on her own. As it is, she says her life has been ruined. She's been fired from her job, and I can only imagine what that ride back to Iowa with her husband must have been like. How humiliating. How sad. And yet ... how titillating, the stories of other people's lusts and frailties. There's a reason this is the most-e-mailed story on the Pioneer Press Web site today. Probably the same reason I posted it on my blog.

sobering

2008-11-27T09:36:00.007-06:00

Sometimes I read the obituaries, scanning them for unusual causes of death or people who led interesting lives but were never recognized in the newspaper until their deaths.

Today my eye caught a headline about an 18-year-old girl named Jenna Lynn, who died of sarcoma cancer. She died at the same hospital where I'd spend the past week, on Monday, the day I went home. We were probably on the same oncology floor. I might have walked past her room on my way to the lounge. The nurses who checked my vitals might have been with her at the moment she died. I am sad and sobered at the thought that on the day I went home, another young soul was going to her ultimate home.

It's Thanksgiving, and I'm more thankful than ever that I am here with my family, and that we have such wonderful support from our friends, family and strangers who feel like friends. Happy Thanksgiving, everyone.

happy eight-month birthday to ben

2008-11-26T12:50:00.006-06:00

Steve and I were talking the other night about the fact that Ben has been in our lives for about as long as the cancer has. He was conceived a couple of months before I got my first diagnosis last year, and he was born three weeks before I learned the cancer had spread.

In that time, filled with such darkness, he has been like a little shining light. It's remarkable how his personality has been so happy and good-natured. For every bad development that happens with my health, it seems that Ben adds an element of happiness we so sorely need — a ready smile, a look that says "I'm so happy to see you." It's as if God sent him to us as a counterbalance, knowing we'd need some light in the midst of our dark.

*Sneeze!*

And here's his cute brother at eight months.

homecoming

2008-11-25T19:03:00.003-06:00

The house was quiet and tidy when Steve brought me home yesterday afternoon. His sister Sue was watching the boys for the day, and Daniel was napping in our big bed.

I felt tired, so I decided to go slip into bed next to Daniel. I didn't wake him up, and soon I drifted off. We napped together like that for a little while.

Then Daniel stirred and opened his eyes. He looked at me, and I looked at him, and I said, "Hi buddy. It's Mommy. Mommy's here. I'm so glad to see you."

Still drowsy, but clear-eyed, Daniel sat up and asked, "Where's Sue?" We called for her, and she came in.

"Hi Daniel," she said. "Can I get something for you?"

"I want Sue to see Mommy," Daniel said.

I thought my heart was going to sing.

After a minute, he lay back down and went back to sleep.

my week in the hospital

2008-11-25T09:06:00.007-06:00

Here's the Cliff's Notes version of all that transpired between last Monday and yesterday:

• I checked into the emergency complaining of shortness of breath and pain in my right side.

• I was diagnosed with a blood clot in my right lung and fluid build-up around my right lung.

• I was put on blood-thinning medication to prevent future blood clots and will stay on some form of that medication for the life of the cancer (likely for the rest of my life).

• I had one liter of fluid drained from my lung. A chest x-ray showed there was still plenty more in there, so I went back the next day and got a chest tube put in the back of my ribs (ouch!), which drained another one-plus liter.

• A set of scans Thursday revealed that more tumors have grown in my lungs and in the chest cavity outside my lungs. (After the scans, they took out the chest tube.)

• I had a round of chemotherapy for the new tumors.

• I had a blood transfusion for anemic-level hemoglobin counts.

• I went home Saturday.

• The hospital discovered I'd developed a bacterial staph infection and called me back. (Note that I tested negative for any such infection when I checked into the hospital Monday, which means I developed it sometime during my stay.)

• I started a round of antibiotics for the chest infection.

• My Hickman catheter was removed because doctors told me there's too high a risk that clumps of bacteria will stick to the plastic and not come off.

• A new PICC line was placed in my arm so I can give myself antibiotics at home.

• I came home yesterday afternoon — exhausted and trying to remember the barrage of pills and shots and antibiotics I have to give myself.

A fellow St. Paul sarcoma survivor sent me an e-mail the other day, and I hope she doesn't mind my printing part of it: "I feel your emotional rollercoaster, too, for I have received bad news too and it is a slap in the face to say the least until you can find that place that puts you in the “new normal” but you do not want to accept that place."

The new normal. That phrase has been sticking around in my head since I read it. It's so true. I hope I can get used to it soon. Right now it just makes me feel so excruciatingly sad.

Meanwhile, I'm trying to reimmerse myself in the comforts of home life. It'll be easier once the chemo nausea wears off and I can eat normal food without blanching at the thought of it. Steve and the boys are the biggest comfort of all. They seem so bonded. I look forward to reentering that bond little by little as my strength comes back.

sunday afternoon

2008-11-23T14:47:00.002-06:00

Steve brought the boys in today, as he did yesterday, and it was so good to hear Daniel's chatty chatter and see Ben's big grins. I think he's getting ready to crawl! He's getting good at lifting his butt into the air and scooting forward, as he did on my hospital bed. I missed seeing that progress in the past week, so it was a fun surprise. Both boys have charmed the nurses. Daniel says "hi" to anyone who comes into the room, and he likes to push the buttons that make my bed go up and down. He's getting better about staying out of non-childproof areas, and today I even walked with him down to the lounge so he could look at cars and bridges from his seventh-floor vantage point. He thought that was cool.

I am still at the hospital. We spent a good part of the morning going back and forth about plans, but the end result is that I am going to spend one more night here (to get another dose of antibiotics). Tomorrow morning, I am going to have my Hickman catheter removed, as they believe it is most definitely infected, and replaced with a PIC line inserted into my arm so I can be sent home for two weeks of antibiotic IV treatment to get rid of this infection. The PIC line will come out after the antibiotics are done, and I don't know what they'll use for my next round of chemo, which is scheduled for later in December.

I'm not too happy about these latest developments - shooting the breeze in the hospital for another full day with nothing to do but wait for a round of antibiotics tonight, losing the convenient catheter that I've been so careful about maintaining for months (and that has allowed me to avoid many an arm poke for blood draws). I'm not happy about it, but I don't want to dwell on it today. This whole week has taxed my spirits and scared me a lot, and I need to find some way to breathe back some positive vibes.

I really want to say thank you to all of you for your support. I don't know some of you in person, but I do feel like I've gotten to know you through your blogs and our shared experiences. (Card Blue and L, and Josh, and other sarcoma bloggers especially.) I am offering up Thanksgiving prayers for you all week.

will this nightmare never end?

2008-11-22T16:19:00.007-06:00

So I'm home! Yay, right?

I was home for maybe a half hour when a doctor called. They'd just missed me with this news: My latest blood culture showed an infection for something called gram-positive cocci. I probably got it through my Hickman. What's interesting is that when I was tested for this on Monday night, it was negative. When tested last night, it was positive. So I must have gotten it sometime during my stay in the hospital.

Here's some info from the Internet: Many gram-positive cocci are commensal organisms that cause infection only when they find their way into normally sterile areas. They are the most common cause of skin infections and a frequent cause of pneumonia and septicemia. Although generally susceptible to a broad range of antibiotics, certain strains have developed resistance to every available antimicrobial agent.

And can you guess the name of one strain of gram-positive cocci? Yes ... MRSA. We don't know that's what it is, but the fact that it's a possibility does not sit well with me.

This &%$#ing sucks.

What sucks more is that I have to go back to the hospital now and get an antibiotic through an IV. If it weren't the weekend, I could maybe do it outpatient, but I need the antibiotic infusion twice a day. Maybe ... I come home again tomorrow? I really hope so. My heart is breaking at the thought of leaving this warm, lovely home for another night (at least) at the hospital.)

I am just beyond angry about this. I really believe I picked up this infection at the hospital. Do I have any legal recourse here? Lawyers, please let me know.

i'm going home today ... hopefully

2008-11-22T10:58:00.005-06:00

I'm sitting in the seventh floor lounge that overlooks the Mississippi River. I see a light sprinking of snow on the paths below and a good number of crunchy footprints and - what are those? - cross country ski tracks, or parallel bike tracks? I've heard it's been very cold this week. At least the sun is out, at least, glittering on the river.

I waited a long time yesterday to get started on chemo. I'm kind of getting used to the waiting - or at least learning to expect it. They moved me to this floor sometime in the early afternoon, but my chemo didn't begin until about 10:30 p.m. Which was OK because it meant I could sleep through most of it. My night sweats were really bad. I had to change my gown twice, and the nurse changed my sheets once, because everything was so damp.

I can't go home right away today because now they've told me I have anemia, on top of everything else. My hemoglobin count has been in the 7 range for the past couple of days, which is pretty low. So before I go home, I'm getting a blood transfusion. I balked about this when I first heard about it last night, but I'm OK with it now.

They told me they'd be giving me the tranfusion "in the morning," but knowing how long things take to happen around here, I've got my lunch menu ready. I just hope I don't have to wait until 10:30 p.m.!

I talked to Steve again this morning, and heard Benjamin's cheerful, burbling laughter. Daniel sounded grown-up and happy when he said "Hi" into the phone and then started telling me there was snow outside. I asked him if he was going to go outside and play in it, and suddenly I was no longer top priority - he gave the phone back to Steve and started going for his shoes. Steve said Daniel asked last night if Mommy was out in the hall, and that got me crying again, big-time. I wish I'd never have to be any farther than out in the hall. I wish I didn't have to think about him ever having to lose me.

emotional friday

2008-11-21T13:25:00.005-06:00

I am getting ready to get my stuff together so I can finally move out of this room. I'm not going home yet, though. I'm moving to the oncology floor from the lung and cardiac floor, where I've been all week. As soon as I'm settled in, they're going to start a round of chemo.

Steve came over this morning, and we met with the doctors, and yes, I have more tumors. In my lungs and outside on the chest wall where the fluid was. One of them is bumping against the cavity that holds my liver. Ugh, ugh, ugh. This chemo is a new combination of drugs. I don't know how it will be compared to past ones, but I think I can say goodbye to my newly grown hair.

I cried. It's been an emotional morning. I don't know how to cope, so I either try not to think too hard about it, or I cry. I cried when I got into the shower to shave my legs for the first time this week and sprayed water all over myself. (Plus, it's just humiliating to sit in a shower all naked and stinky and have someone help you bathe.) I don't think the aide helping me understood. "It's OK ... we'll get you all wiped off." I finally blurted out the stuff about the cancer, and then she backed off, and I thought she was going to cry, too. And we got my legs shaved.

On the plus side, I got the chest tube out, which makes me feel 80 percent back to normal as far as breathing goes. I still cough a little and have some sore spots in my back, but I can get in and out of bed easily.

And Kiersten, our summer nanny who is now in medical school here at the University of Minnesota popped over after her class with cookies. We chatted for a while, and that felt nice.

I finished Twilight and have started the second book in the series, New Moon. Quick reading and fun for a long hospital stay!

frustration

2008-11-20T22:06:00.007-06:00

Being in the hospital is stressful in so many ways, but one of them is trying to be your own advocate. Take this seemingly small issue: Ever since I got my Hickman catheter inserted in June, I've been instructed to flush the line or lines with heparin immediately (meaning, within about 10 minutes) after using it for something else (like chemo or blood draws). The heparin prevents the lines from clogging up. If they clog up, I'm screwed. I'd have to have this catheter removed and a new one put in, which would be a major ordeal. So I'm really vigilant about taking care of it at home, and I've been having to speak up for myself here because some nurses tell me it's not hospital policy to do that. (One nurse told me there's a shortage of heparin, so they're being encouraged to use saline locks if they plan to use the line again in a couple of hours.) Nonetheless, I want my heparin, and I want it now! I don't know how many times I've had to assert myself on this. And I always feel like I'm coming across as the "difficult patient."

So one of the nurses - a very nice guy, but we had the heparin discussion tonight - started talking to me tonight in what started to sound increasingly like a lecture about how we can't control the little things, and how sometimes we just need to let go and be calm. He said some other stuff, but by that time, my head was simmering, and I asked him to give some time alone (which is actually how I do deal with my stress). Of course there are many little things I can't control, and I don't try to. I don't complain when they wake me up every four hours to take my vitals. I try not to complain about the every-six-hour needle pokes for blood draws. I tried to be patient Tuesday when I waited for the better part of the day for them to tell me when they were going to drain my lungs. This chest tube has hurt so badly, but I've been trying to be a nice, patient patient and to thank people for the things they do for me, etc.

I need to be able to take charge of certain small things that affect my care - but I'm well aware that I am "not very healthy right now" (as the nurse put it), and that the biggest things are things absolutely outside my control. Like the results of tonight's PET and CT scans, which I should hear tomorrow. I am dreading them with all my heart, ever since Dr. S. told me this morning (woke me up standing at the edge of the bed - freaky!) that he thinks there will be more tumor growth where the fluid was. If that turns out to be the case, I don't know how I'm going to bear the news. So far, I feel like I've been managing not to sink into a mire of hopelessness. If I find out I now have a new slew of ugly tumors growing inside my lungs - if things are taking off faster and faster, what then? It overrreaches my tenuous hold on coping with cancer. It makes it harder for me to trust in my body or to believe that my body will carry me through more and more time.

This week has thrown me and my spirits in ways I never imagined when I checked in Monday. Of course I have to take care of my damned catheter. I can't let go of everything. That would be giving up completely.

still in the hospital

2008-11-19T08:34:00.005-06:00

So the good news is that they drained about a liter of fluid from my lung last night, and it didn't really hurt, though the pressure was a little uncomfortable at times, and I was back in my room in time to meet room service delivering my dinner of cheese tortellini, chef salad and chocolate pudding.

It does take some of the pressure off, and my breathing is easier, and the pain is less. But there's more fluid in there still - maybe close to another liter. The interventional radiology people (a.k.a. lung drainers) said it's dangerous to drain more than one liter at a time, that it can actually kill a person on the spot.

So where does that leave me? One problem is that the fluid obscures the view of the part of the lung it covers, so it's been impossible to see the big tumor that we've been talking about for radiation. I saw Dr. S. (my regular oncologist) this morning, and he said they'd like to try to drain the rest of the fluid out of me slowly so they can get a clear look. This might involve getting a tube inserted that hangs out of me and lets the fluid drain out slowly, over the course of days. And for the longer-term, we may put radiation on hold; depending on whether the fluid tests malignant (which I suspect it will), Dr. S. thinks it might be a good idea to do some more chemo instead of radiation at this point. Sigh.

I feel overwhelmed this morning, and homesick. I'm getting an inkling that this might be more complicated than I'd originally thought when they checked me in Monday night. At that point, I figured this would be in and out - take care of the blood clot and the fluid and let me go home. Now who knows how many days I'll be here?

I miss my boys so much that the sounds of their voices over the phone brought tears to my eyes this morning. (Steve brought Daniel over yesterday, and it went fine until he got bored and decided to show us all the ways my room is not childproofed!) People are calling Steve and offering to help in whatever ways they can - meals, time with the kids - and I really appreciate that. Thank you, everyone. I feel as if I'm in a little parallel universe over here while my real life is continuing at home. Of course this is my real life, here, in the hands of doctors and nurses and aides and people who wake me up at all hours of the night. But on the plus side, I have time to read (I've started Twilight, the first book of the vampire series) and watch TV and occasionally get online here, so I probably should appreciate that.

Breakfast just arrived, so I'd better go eat it before the coffee gets cold. Thanks, everyone, for all your support.

another bump in the road

2008-11-17T22:05:00.003-06:00

I was so winded during playgroup today, and worried about it, that I called my oncologist's office and reported it. They immediately told me to go check into the emergency room. Turned out to be a good move. I have a pulmonary embolism (blood clot) on the right side of my lung and pulmonary effusion (fluid buildup between the lung and the outer wall of my body) on both lungs. So they've admitted me to the hospital. They've got me on a heparin drip (a blood thinner) to address the clot, and tomorrow they'll apparently drain my lungs. Yuck. The fluid is something that sometimes omes back with cancer patients, so I've got that to look forward to. I'm still a little winded, and my heartrate has been so high (140s and 150s) that they gave me a shot of something to calm it down. It went down for a few minutes, but as soon as I got up and sat down at this computer (which is at the end of my bed), it started jumping up again. I think I'll go to bed.

I've cancelled the Cyberknife appointment for now. Please keep my in your prayers.

more pain, more decisions, more waiting

2008-11-15T13:03:00.007-06:00

I think the big tumor next to my spine is growing, and I'm scared. All week I've had what feels like a muscle ache in the right side of my back, spreading around to the front of my ribs, and it's getting worse. It's the tumor that kept growing during chemo; and, since I haven't had any chemo since early October, I wonder if that withdrawal is freeing it up to grow faster. I know the tumor is sitting up against a muscle, and I think it's irritating it more and more. It hurts to take a deep breath, to cough, to sneeze, to bend over and pick something up off the floor. At night, I can't roll onto my side — either side — without pain and shortness of breath, even with Vicodin. Even with two Vicodin. Ibuprofin helped get my hip under control, but it doesn't seem to be doing too much for this irritated muscle, except maybe take the edge off a little.

I'm supposed to be getting radiation on this tumor, and I would have started the set-up process Thursday, but that's been delayed while I explore another option besides the conventional radiation Dr. C. would be offering at the University of Minnesota, where I go for my cancer care. This other option is called Cyberknife, and it's supposedly a more focused, targeted form of radiation that would take less time and have fewer side effects. It's only offered at St. Joseph's Hospital in St. Paul. I have an appointment there Tuesday and then will decide whether to go that route. But it takes time to set up radiation treatments, and I'm worried about the delay in starting. Will they try to rush me into their schedule, or will they push it to after Thanksgiving? I don't think I can deal with all this pain until then — and more than the pain, the uncertainty of how much this tumor is running amok inside me, what damage it could be doing.

Did I say how scary this is? At times, I have trouble keeping it together. Today, while I was standing over the kitchen sink, Steve asked me if I was OK, and I said, "Yeah." Then thought about it. "Actually, no. I don't want to be dying." Which probably was really melodramatic and probably isn't happening, but still — you never know how quickly these things can blow out of control. I just wish there weren't so much uncertainty. It's so hard not to know.

dear benjamin

2008-11-14T10:55:00.009-06:00

My sweet boy,

I feel like I owe you a bit of an apology. I know I don't devote as much time and attention to you as I did to Daniel when he was your age. I know you are more often left to play by yourself or with the nanny. I know I sometimes slip and don't feed you your solids every single day. I know I'm not as vigilant about making sure you get age-appropriate activities to nurture your growth and development. I used to take Daniel out for stroller rides almost every day when he was younger than you — just weeks old, even. And I'm lucky if you get outside for fresh air a couple of times a week.

I'm not going to pull the cancer card on this one — well, except for the getting outside part. That's because of my hip. Mainly, it's just that having two boys instead of one is more of a juggling act. And you have to admit that your big brother is at quite a demanding age. You've seen him. He can talk quite well now, and he's very emphatic about expressing his needs! When I was pregnant with you, I felt sad that Daniel wouldn't have my undivided attention anymore. Now I feel a little sad that you don't get more of it.

But you know what, Benny? I think you are doing fine in spite of it. You are an amazing little boy. You are just as curious as your brother, and you are exploring everything you can get your hands on — the newspaper, our full dinner plates, your activity gym. No, I don't always get down on the floor and stack blocks in front of you, but you seem to be developing your pincer grip just fine, grabbing the carved wooden insects from Daniel's puzzles and inspecting his Thomas trains. You are practically scooting across the room, and you've only just figured out how to sit up. You grab your spoon with such a grip that I can barely pry it from your fingers. You are going to be a handful once you learn to walk and talk — I can tell! In a good way.

So maybe I can relax. Maybe that's the secret: Babies figure things out, even if their parents are more busy and frazzled and tired than they were with the first one. And you know what? You may get less attention from Mom and Dad than Daniel did, but you have something he didn't have: a big brother who loves to help feed you and talk to you and play with you. Ben, you are a wonderful, smiley little sweetheart, and you're surrounded by love, and I think you're going to turn out just fine.

With love, love, and more love,

Mommy

... and two eyes made out of raisins

2008-11-12T17:45:00.000-06:00

the tao of oprah

2008-11-11T16:21:00.005-06:00

Have I mentioned how much I enjoy Living Oprah? I may not catch the actual Oprah show every day — and God knows I've had my own issues with Oprah's message (see here and here) — but I try not to miss this ambitious (and often sassy) blog every day. The author, a 35-year-old "performance artist" and yoga teacher, is spending the whole year trying to "live as Oprah advises" on her show, in her magazine and on her Web site, in hopes of finding happiness by living "the best life." So ... if Oprah says we must go see the new Baz Luhrman film, Australia, she'll do it. If Oprah tells viewers to repaint that tired old bedroom, she'll do it — she's done it. This self-proclaimed Celine Dion hater bought tickets to a concert because, yes, Oprah encouraged all her viewers to see Celine next time she was in town. The year is nearly over, so I don't have much longer to enjoy Living Oprah, but hopefully she'll get a book deal, and then I can read the book. I have a feeling it will be very funny!

this and that ...

2008-11-09T11:18:00.017-06:00

• My first issue of Wondertime magazine came in the mail this weekend, and I finished it off this afternoon. I've read it in doctors' waiting rooms and thought it seemed whimsical and interesting, so I subscribed. This issue hit me as Real Simple meets Parenting. In other words: light, fluffy, pretty and uncluttered, well-meaning, enjoyable, fairly mainstream, somewhat mindless, and over in an hour. (Isn't that the way with all things Disney-owned?) Today I learned how to keep Christmas simple and nonmaterialistic — and how to make my own Christmas ornaments by shaking balls I already own around in plastic bags filled with glue and glitter. Um, no thank you.

• I'm off chemo for now, and I'm going to be starting radiation again soon. There are two larger tumors in my lungs that the oncologists would like to zap — one near my spine on the right side, the other near my windpipe on the left. They're the two that could potentially cause the most trouble if they kept growing, and the one near my spine is the one that hasn't been responding to chemo. I'm nervous about it all, but from I've seen and heard, I think it's the best thing to do right now. They're not going to go after all my lung tumors. They can't; there are just too many little ones. This is all about buying time. (I am looking forward to having my hair grow back! It's already about a half-inch long, but I'm not ready to debut my pixie do!)

• Steve and I went out last night and had a great date without the kids. We need to do that more often! I even wore makeup — which is to say that I went out yesterday afternoon and bought new mascara and eyeliner, which I had thrown out when I started chemo because they said eye makeup (especially old eye makeup) is a source of infections. Anyway ... we went out to dinner at our favorite neighborhood Italian restaurant, hit a bookstore and split a latté, then went to the Northrop Auditorium and saw a ballet staging of Carmina Burana. It was breathtaking. I'd never seen it before, but of course everyone knows that music. (The Web tells me "O Fortuna" has been featured in commercials for Reeboks, Old Spice, Guinness and Pringles.)

• Does this little guy look like the Joker? He worked really hard to get that Naked Juice Purple Machine around his mouth just right.

friday

2008-11-08T10:10:00.004-06:00

It snowed yesterday morning — a heavy, wet snow, and Daniel decided he didn't want the flakes falling on him. Ben and I stayed inside and ate some applesauce.

back on my feet

2008-11-05T18:42:00.005-06:00

After inconclusive appointments with my chemo oncologist and a radiation oncologist in the past week, we finally met with an orthopedic oncologist yesterday who gave me some answers about my hip.

Tendonitis.

Yes, a basic muscle inflammation brought on, probably, by overuse during our trip. Just as I'd wondered, but no one could tell me until yesterday.

So I'm taking three Advil at a time, three times a day for 10 days (if my stomach can stomach it). Meanwhile, I'm already feeling better, and now I can walk around the house again with my cane, as long as I don't overdo it. Ibuprofin, rest and physical therapy are the doctor's orders. I can do that!

look how far we've come

2008-11-05T12:21:00.003-06:00

When I saw Barack Obama and his family walk onto the stage at Grant Park last night, and I watched his adorable girls waving at the crowd, my mind flashed back to images like this one ...

... and I was overcome with gratitude for how far we've come in this country. I am so proud.

One giant step toward unity. It fuels my hope that we can accomplish even more.

goosebumps!

2008-11-04T13:12:00.000-06:00

daniel the lion

2008-11-01T09:09:00.002-05:00

Daniel went as a lion for Halloween yesterday. He really had a fun time, though he was grumpy when I took these pictures and didn't want to pose for any with me. (I was wearing all black with my purple wig.)

A lion with deep red whiskers, you may be wondering? A lip pencil was all I had because I'd thrown out all my eyeliner and mascara when I started chemo (because of the higher risk of infection from eye makeup, or so I was advised). Daniel helped me draw some of his whiskers. He likes to hold onto any and all pens and pencils he can get his hands on, so he was not happy when I took the lip pencil away from him at the end. Thus the momentary grumpies during picture time.

But he soon cheered up, and he and his dad collected a lot of candy during trick-or-treating. What candy did he choose out of all his stash? The lollipops. And not because he wanted to eat them, but because he could carry them around like weed-whackers. We had some sticky hands by the end of the night — but that's better than a sugared-up boy! Unfortunately, he discovered the magic of M&Ms this morning.

Ben sat in my lap while I handed out candy. We decided he would be the World's Most Adorable Baby for Halloween — which didn't take much work in the way of costume design! Next year, he can go trick-or-treating with Daniel.

jack-o-lanterns

2008-10-31T17:03:00.003-05:00

hip hip hooray (not)

2008-10-29T11:54:00.006-05:00

The answer so far to why my hip is causing me so much pain is: I don't know.

The x-ray and CT scan I had Monday revealed that nothing much has changed since the last scans. Possibly a tiny bit of growth in one part of my hip tumor, but nothing substantial, and no additional fractures that would set off any alarms. (My lung tumors have stayed the same, except for the big one that keeps growing, but my oncologist doesn't want me to do another round of chemo right now. Maybe later, maybe a different form of chemo. Or maybe we'll have to start looking for clinical trials — argh, so much to think about.) I'll be seeing Dr. S. tomorrow and an orthopedic oncologist next week, and maybe the radiology doctor, too, but so far, at least over the phone, no one has been able to put a finger on what's causing the hip pain.

Meanwhile, I can't sleep without Vicodin, and even then, changing positions is painful. By day, I glide rather gracelessly around the house in my wheeled transport chair, bumping into corners and doorways. It's really frustrating to have a new set of limitations thrown in my path. I hope this turns out to be nothing but a major muscle strain caused by overuse during our trip. I hope it's not permanent. Because then we'll have to start thinking about how to outfit our house, yard, cars, etc., for wheelchair access. And that's not a project I want to worry about right now, on top of everything else.

happy birthday to steve

2008-10-27T20:11:00.007-05:00

Happy birthday to the man who went to Walgreen's yesterday and bought the last wheelchair in stock so I wouldn't be in so much pain. (Not a wheelchair, actually — a transport chair. I can't steer it myself, except by putting my feet on the ground or groping along the walls.) Happy birthday to the man who spent his lunch hour taking me and my transport chair to the doctor and wheeled me to get an x-ray, who left work again early to take me to get a CT scan when the x-ray proved inconclusive. Happy birthday to the father who takes time to have fun with his sons. Happy birthday to my sweet, supportive, wonderful, patient husband. Happy birthday to my best friend and my deepest love.

There were things I wanted to do for him this year, things I would have done if I hadn't ended up in so much pain and unable to walk. Bake him a cake. Wrap his present all the way. Bring him breakfast in bed. Instead, we took two separate trips to the doctor and hospital, and he practiced the art of getting me from car to wheelchair. "That's not what's important," he said, when I told him I wished I could have done more. It's true. And I hope I'll be here next year to do those things for him.

We both are the proud, kooky owners of new glasses, and both of us think our spouses look damn sexy in them. Our bespectacled selves went out to eat tonight and sat in the corner of the restaurant laughing and singing along with the 80s music on the loudspeaker and staring at each other. And that's the most important thing. Happy 40th birthday to the man who always manages to make me laugh, even when I'm in deep pain.

ben at seven months

2008-10-26T22:09:00.000-05:00

Bathed, bottled and pajama'd. These were taken without a flash, so they're a little dark.

washington and oregon

2008-10-26T12:14:00.012-05:00

I think when you travel with small children, the majority of your time is spent under a certain amount of stress, but every once in a while, a gem of a moment occurs that makes it worthwhile. Here's one of them — a rainbow over Lake Crescent, in the heart of the Olympic Peninsula.

We drove around the entire Olympic Peninsula, with two nights in Port Angeles. That's a lot of driving — more than we anticipated — but it was so beautiful, and Ben and Daniel held up fairly well most of the time. (We spent about five minutes passing through Forks, the setting of the popular Twilight Series vampire books, possibly the darkest, grayest, rainiest spot on earth.)

Here we are on top of Hurricane Ridge, a spot about 5,200 feet above sea level with magnificent views of the Olympic Mountains range.

We had a minivan all week, and I must say it was nice and roomy.

After six long hours or so on Pacific Coast Highway 101 Monday, we arrived in Seaside, a little beach town about two hours outside of Portland where I used to come with my family and friends when I was growing up. Our hotel overlooked the ocean, so we got to see some gorgeous sunsets from our room.

There was a swing set right on the beach, too, much to Daniel's delight.

Just after I took this picture below, a rogue wave caught Daniel's feet. He turned around and tried to run away, but he tripped and fell face-down in the ocean. Cold, wet and frightened, our boy had no desire to go back near the water after that, but he did have fun playing in the sand later in the day. I hope he doesn't have recurring nightmares of falling down while trying to run ... like I do.

My sister Ellen and her dog Arthur came out to spend the afternoon with us. They're in the background of this picture.

The end of the week was spent in Portland with family, like Daniel's 5-year-old cousin Teresa, and friends, like Susan and Charles, whose kids had a good time playing with Daniel and Ben.

Here are 19 members of my family — aunt, uncle, parents, cousins, husbands, wives, siblings, nieces and nephews and children — piled together for a group photo. It was great to see them all!

The biggest downside of the trip was that my hip took a significant turn for the worse in the last couple of days. I don't know if I overused it with too much walking or baby carrying, or if the tumor that area is growing, but it is now extremely painful for me to walk, and I cannot straighten my leg all the way. I needed a wheelchair to get through the airports on the way home, and I could barely walk down the aisle of the plane. I am worried that the tumor might have wrapped itself around a muscle, and I'm scared about what this might mean. Do I have to start thinking about using a wheelchair? Maybe some more radiation? I'll ask my doctor Monday, when another round of chemo begins.

At any rate, it was a good trip, but like all long trips, it was good to be home at last. Daniel slept in our bed last night, and as we were going to sleep, we talked about the events of the week — the exciting airplane rides, the beach, seeing grandma and grandpa, going to the Portland Children's Museum, playing with Teresa and his new friends Colin and Phoebe.

"What was your favorite part of the trip?" I asked Daniel.

"Umm ... home," he said.

P.S. On catching up with the blogs today, I learned that my friend Vanessa has had quite a dramatic week herself. Congratulations, Vanessa and John, on the birth of your baby son, Solomon!

travel tomorrow

2008-10-17T13:57:00.004-05:00

Daniel is sleeping. The little guy is so excited for our airplane ride tomorrow — it's hard to contain him as he tries to stuff his entire collection of board books into his backpack. He fell into his nap hard, though, spooned up against me after just two stories. I'd like to be napping, too. But there's too much to do.

Sorting through baby clothes, toddler clothes, my clothes, socks, shoes, diapers, underwear, jackets, rain gear, hats. Sippy cups. Bottles. Spoons. Bibs. Formula. Books. Toys. Prescriptions.

How many pairs of shoes does Daniel need? How many books will hold him over on the plane? How about markers and pencils? Is there room for them? How many snacks should we bring with us, versus buy at the airport?

Which backpack will carry my camera? Which one will hold the quart-size plastic bag of heparin vials I will have to show at security? Will I have to explain what they are? Will they need to x-ray my cane? Where do I pack the big can of formula — in a suitcase, with just enough in a backpack to get us through the first day?

I know it's going to be wonderful once we're there, once we've got the two carseats strapped into the minivan we're renting, once we drive out of the Seattle-Tacoma Airport to the Olympic Peninsula.

But right now, I feel overloaded with all the prep work. I think I'll go take a nap after all.

love for life

2008-10-14T13:55:00.001-05:00

Her words weren't written for me, but they might well have been.

"Heck NO, I never felt like giving up and I NEVER asked "why me"!!! I want to live to be 100." she said, one cancer fighter to another who had posted on one of the sarcoma boards I sometimes read. "... Chemo sucks but if I can do it anyone can. Sorry I don't know about your type of sarcoma but someone makes those statistics and I am one of those people. There less than 20 people in the world with my type so there is very little research on mine. ... What have you got to lose? Life is full of ups and downs...this is just one of those downs. YOU can not change anything that has happened up to this point... Stop crying and start getting active in getting yourself well and healthy! Don't mean to be harsh but unless you are 90 and have one foot in the grave already....you have no reason to give up."

Well, yeah, it did sound kind of harsh. (I firmly believe it's OK to cry about cancer sometimes!) But audacious, too — she's dares to believe she's going to make up the small statistic of people who actually beat this thing. And I thought, if she can believe it, so can I.

Lately I've been feeling very ferocious about claiming my need to live my life without worrying about dying. Maybe it was the tumors shrinking. Maybe it was the Mayo Clinic doctors telling me they might be able to push me a long way. Maybe it's my excitement about our vacation to the West Coast this month. Maybe it was the kick in the pants this woman's post gave me to face my life with gusto and act as if I'm going to live to be 100. To believe it!

Sometimes my desire to live, to hold onto this world, hits me full force, like it did this morning when I was driving across the Mississippi River with Daniel on the way to the mall, and the chilly air winked with sunshine, and K.D. Lang's version of Leonard Cohen's "Hallelujah" was playing on the CD player, and I turned around to see how Daniel was liking the song, and we held each others' gaze just long enough until I needed to watch the road again, and tears came to my eyes because I love this life, this music, this autumn, my family, so much.

it's all happening at the zoo

2008-10-10T18:47:00.008-05:00

A better day today.

This morning, we went to the Como Zoo. It was chilly and overcast, and all the animals were out. I wish I'd brought my camera.

The gorilla stared at us, banged his big hand against the glass, then turned around and mooned us as he drank from his pool of water.

The tiger ran, as majestically as a caged creature can, up and down the fenceline.

The father lion roared and roared, and the mother lion sat and watched him.

The timberwolf put his nose in the air, opened his mouth and howled, over and over. His silver-furred mate came out of the woods a few times to check on him, then went back.

The pink flamingos waded around in the pond with the ducks, their long necks curving as they tucked their heads into their wings.

It was all spectacular (and maybe a little sad). I've never seen such a showing of animals up close at the zoo.

The sun came out this afternoon. How do you like Daniel in his amazing technicolor outfit — the sweater, the nanny's scarf and his green shoes? To top it off, he found a stick that was just the right size to use as a cane, and he looked like a little gent. He had fun crunching the leaves, too.

Here's Ben, showing off his back strength with a little tummy time. I think he will be sitting up quite soon.

stream of consciousness

2008-10-09T20:49:00.002-05:00

blah. what a shitty afternoon ... daniel wouldn't nap and wouldn't nap and i wanted to nap and he just kept being so damn cute playing with my hat, pulling it off my head, playing with my hair, my ears, my eyes, i touched your eye, laughing. i smile but i want him to take a nap so i can nap, and i'm so tired, and finally after an hour and a half and a mess of tomfoolery, i say you can take a nap, or you can go out and play with anna and benjamin, and he says ok, so i take him out there and say, now i'm going to go rest, but then he wants to come back with me because he is so attached to me and doesn't want to be without me. so there's more of the goofing off in the bed and i am not getting any sleep until anna takes him and ben for a stroller ride. finally. so then tonight we have a ticket to go see an author speak about how to cope when your kids are driving you nuts, and i am in such a bad mood cooking dinner, about to explode, poor steve keeps rubbing my shoulders and that helps a little, and then i'm running late and i drive to the school where it says it's going to be but it's not there, a lady says the location was changed, it's at a different school, so i drive to the new school, and i see teacher sue there, and she gives me a huge hug which feels good, and i go sit down, and the talk would be better if i weren't in such a shitty crappy mood, and all i end up doing is feeling really guilty that we don't have daniel's bedtime and naptime scheduled to a t. well, crap, come live at my house for a week. i guess there were some good ideas, but by 8 i was so antsy and irritated i decided to go home early, and when i got home, daniel was in his pajamas and gave me a big hug and kiss, and jane had just gotten benjamin to sleep, and she laid him down on our big bed, and he's there now, and i'm really in the mood to buy some new shoes or stationery or something pretty.

solids

2008-10-07T15:25:00.005-05:00

Benjamin tried some rice cereal last week, his first attempt at solids. He didn't really get the hang of pushing it to the back of his mouth, so we're waiting a few days to try again. But we did take pictures for posterity.

He smiled and giggled all the way through his six-month checkup this morning. He's nearly 16 pounds now, and 26-and-three-quarters inches tall. (Daniel had his checkup, too, and weighed in at 26 pounds and 34 inches.) He's getting over a cold, so we didn't do the DTaP shot as I'd planned. We'll go back and do it when he's better; I'm in no hurry.

interested in cloth diapering?

2008-10-07T12:06:00.005-05:00

I'm selling some newborn-sized cloth diapers and covers we're no longer using. They're all clean and in great shape, though the diapers are a little stained from repeated use. You can have everything for $50; or $3 per item. Here's the inventory:

13 Kissaluv fitted cloth diapers, size 0 ($13 each new)

2 Bummis Super Whisper Wrap covers in a yellow pattern (not this froggy pattern, though I do have these in the next size up), size NB ($11 new)

2 ProRap Classic covers in white, size SM

Three more covers (Gerber's and Especially for Baby brands), which you can have for free.

I'm going to list these on Craig's List if I don't hear from anyone, but since I know a gazillion pregnant people right now, I thought I'd mention it here first. Please e-mail or call me if you're interested!

scenes from a saturday

2008-10-04T15:09:00.006-05:00

Daniel and his dad discuss the finer points of the Economist while lounging on the race car bed ...

... and Ben gets some attention, too.

Later, we go to an apple orchard, where Daniel runs around in the hay maze, throws himself into the hay piles and takes his very first pony ride.

It brings to mind a photo we have of my first pony ride, at around the same age. I think I look a little less serious!

seven things about me

2008-10-03T20:02:00.000-05:00

One of the things I like about Facebook is how I've reconnected with people from way back. Like Julie, who lived down the street from me while we were growing up. Now she has six kids and takes classes on top of that and sounds like just an amazing mother and person. She tagged me on her blog, so I'll play along.

1. I am on a mission to read all six Jane Austen novels and so far have read four — all but Mansfield Park and Sense and Sensibility.

2. I have been wearing the same pair of glasses since 2000. I need to get a new pair.

3. Despite the name of my blog, I am not a fan of lemon- or citrus-flavored candies. Give me Twix over Sweet Tarts any day.

4. I have lived on/in the West Coast, East Coast, Deep South and Midwest, plus a college semester spent in Australia.

5. Steve and I read my first junior high diary together, and there were moments when I was totally mortified and moments when we were laughing so hard we couldn't speak. Sometimes both at the same time.

6. I grew up calling carbonated beverages "pop" (like all decent Oregonians do), but now I say "soda." I grew up loving Coke and hating Pepsi, but now I don't drink any soda at all.

7. I am one of only 8,700 people diagnosed with soft-tissue sarcomas each year, which makes it one of the rarest forms of cancer (especially in adults) and one of the lowest on the totem pole when it comes to research and funding. No ubiquitous pink ribbons for us! But think of me when you see sunflowers ...

With that, I tag the following seven people:

Rebecca
Johanna
Liz P.
Barbara
Liz H.
Missy
Cindy

unexpected and welcome

2008-10-01T14:35:00.002-05:00

Another CT scan Monday, followed by an appointment with my oncologist Tuesday — where I learned that several of my lung tumors actually have shrunk! That's great news, better than I ever expected. I've never had any of my tumors shrink until now. The bad news is that one tumor (one of the largest) has grown some more. But even with that, Dr. S. wants to continue with two more rounds of this chemo regime. So back I go to the infusion room Monday.

Two more rounds means six more weeks. It means Steve and Daniel and Ben and I can go on vacation in October in good spirits. Hooray!

good times

2008-09-30T10:54:00.007-05:00

Friends I've known since our newspaper days in Mississippi came to St. Paul last week, one for a conference, the other just to hang out and visit. Laughter, pizza, pregnancy talk, manicures and lots of desserts.

Friday, we said goodbye to Jo and Liz and drove up to Wisconsin, near Lake Superior and Bayfield, and spent the weekend with friends at their cabin. (No, that's not the cabin in the picture.) Cooking, eating apple pie, flying kites, off-road driving, children running and laughing. And fudge ... luscious, finger-licking fudge!

ben is six months old!

2008-09-26T10:24:00.005-05:00

A whole half year ... I can't believe how quickly the time has flown, even with chemo and all the cancer drama. Happy half-birthday, little one!

sunday at st. john's

2008-09-22T16:48:00.005-05:00

For our Sunday drive, we decided to go up to Collegeville and walk around at St. John's University, a Benedictine school with an attached abbey. I think St. John's is one of the most beautiful, restful places I have ever been — a sanctuary hidden amid prairies, cornfields, forests and lakes; a thin place, even, where the veil between heaven and earth is a little lighter, a little more ethereal than it is everywhere else.

I think part of it is due to the spirit of Benedictine welcome that hangs over the place, from the plaque outside the abbey chapel to the older monk who invited us into the Great Hall and gave us a loaf of bread that the monks make at the monastery.

If you asked me my favorite kind of church architecture, I don't know that my answer would be a 1950s-modern design by a former Bauhaus artist (Marcel Breuer). All I know is that whenever I walk into the abbey chapel, I catch my breath. There is something awesome and amazing about it. I had an opportunity to participate in midday prayer with the monks once when I was up there a few years ago. I'd love to do that again, maybe even come for a weekend retreat. That's hard to do when you have kids, though. Maybe I will just have to reread Kathleen Norris' The Cloister Walk, which is about the year she spent living at St. John's.

We took a walk in the woods, around part of the lake ...

... and finally thought to ask someone to take a family picture.

garden

2008-09-20T11:46:00.000-05:00

The flowers are so full and lush right now, just on the verge of falling away into autumn decay, but not quite.

We planted gladiola bulbs around our old stump, and they came in gorgeous red at the end of August, a surprising burst of color for the end of the season.

Steve grew a tomato plant, and Daniel had fun harvesting it all summer long.

We got a small lavender plant last summer at the farmer's market and kept it under a growing light in the basement all winter. It has flourished in a patio pot this year. We rub our fingers on it and smell them — it makes me want to go to the south of France or someplace warm and relaxing like that.

friday ramblings

2008-09-19T11:46:00.017-05:00

It's been an exhausting past couple of days. Monday's chemo session has made me so tired, and my body aches like I have the flu, and I'm cranky and stressed about some household issues. The weather, on the other hand, has been gorgeous. It's been nice to be able to sit outside for a few minutes here and there. It feels restorative to go in the back yard and water plants and tend to the garden. But mostly, I ache and want to nap, which I can't do all day, though I'd like to.

In a strange and unexpected twist, I've discovered in the past couple of weeks that my hair is growing back. It's very thin, but it's nice to have eyebrows and eyelashes again. I haven't had to shave my legs all summer, but I don't even mind doing that again, either.

The oncologist from the Mayo Clinic called yesterday afternoon. Apparently, their pathology people have a different opinion about the origin of my tumors than the opinion given by the people in Boston, which was already a second opinion. In sort, no one seems to have a clear idea of whether this was a nerve sheath tumor or a bone tumor or a cartilage tumor. The probable scenario is that, whatever kind of tumor it started out as, it most likely started in my abdomen and spread to my hip and lungs. Which isn't really news. What does it mean in terms of my treatment? Not much. Maybe there's a larger arsenal of chemo drugs that can be thrown at me. I wasn't in the mood to think about that yesterday, though. Way too overwhelming. ("Not very healing," said my acupuncturist when I told her about it later.)

As I listened to the oncologist and tried to take notes, I idly opened a package that had come in the mail from my sister. It was a copy of Cardinal Joseph Bernardin's book, The Gift of Peace, which he wrote when he was dying of pancreatic cancer in 1996. I skimmed through it last night and was struck by how quickly his diagnosis was dealt him, how human he was in reacting to the fear and anxiety and loneliness of having cancer, yet also so holy and accepting of God's final role for him in teaching people how to prepare for death. His doctors told him he had a one in four or five chance of living five years. My doctor told me in April that half the people with my condition will live another year or more. Cardinal Bernardin didn't beat the odds. I still don't know whether I will.

But I'm not letting that get to me — not today, anyway. (I did the other night. Oh, how I hate going to that place sometimes.) If anything, I'm reflecting on something Cardinal Bernardin wrote about his last visit with his good friend Henri Nouwen (oh, to be able to call Nouwen a personal friend!). "The main thing I remember is that he talked about the importance of looking on death as a friend rather than an enemy," Bernardin wrote. "'It's very simple,' [Nouwen] said. "If you have fear and anxiety and you talk to a friend, then those fears and anxieties are minimized and could even disappear. If you see them as an enemy, then you go into a state of denial and try to get as far away as possible from them.' He said, 'People of faith, who believe that death is the transition from this life to life eternal, should see it as a friend.'"

That's something I'm still working on, struggling with. I wish my belief in life eternal were as strong as Cardinal Bernardin's and Henri Nouwen's and so many people of faith who have gone before me. No one really knows, do we? It's such a mystery. But those words give me comfort, somehow.

It's odd that I would be thinking of death in these terms today because I found out this morning that a friend's father (who used to be the editor of the paper where I used to work) has died. I wasn't privy to the family's final moments with him, of course, but thinking about Henri Nouwen's words makes me hope that there was a sense of peace in saying goodbye, no matter how deeply they miss him. (My thoughts are with you, L. and family.)

At the end of his book, two weeks before he died, Cardinal Bernardin wrote, "As I write these final words, my heart is filled with joy. I am at peace. It is the first day of November, and fall is giving way to winter. Soon the trees will lose the vibrant colors of their leaves and snow will cover the ground. ... It is a time of dying. But we know that spring will soon come with all its new life and wonder. It is quite clear that I will not be alive in the spring. But I will soon experience new life in a different way. Although I do not know what to expect in the afterlife, I do know that just as God has called me to serve him to the best of my ability throughout my life on earth, he is now calling me home."

I only hope I am as full of joy and peace when my time comes.

update

2008-09-19T11:46:00.003-05:00

Today's paper carried this good news about Sandra Cooley, about whom I wrote after reading of her plight on Sunday. I'm so happy that she has gotten through this bureaucratic nightmare and received official citizenship — which means she can now receive her Social Security disability payments. Ruben Rosario's update says:

Cooley, 59, is battling breast cancer that has spread to other organs. She underwent gamma-knife surgery this week to shrink five tumors in her brain. The monthly $422 in held-up benefits would help defray out-of-pocket medical expenses.

It sounds like at least one senator got involved in the case, maybe more. Now her family can concentrate on what's really important.

humph

2008-09-16T21:43:00.010-05:00

You may have noticed that the top-left section of this blog no longer has my picture, just my name and my husband's name (sometimes above mine, sometimes below it). I don't know how the addition of my husband as a co-author managed to obliterate the rest of my profile (unless you click my name), or how to get my picture back. At any rate, yes, my husband has been added as an official contributor to this blog, mainly so that he can step in and post updates if anything should happen to me — a role he hopefully won't need to fill for a very long time. Which begs the question: Does anyone techie out there know how to get my old profile showing again? Or at least a way to keep my name on top? It's still my blog, after all.

Edited to add: It's fixed! Thanks, Lollipop Goldstein!

shoe sale!

2008-09-16T13:41:00.005-05:00

After searching unsuccessfully at Peapods for a pair of See Kai Run shoes that I liked in Daniel's size, I ordered these this morning from Amazon — half price! They will go perfectly with his new Old Navy jacket, which is also green and black. So if you're looking for some good deals, Amazon is the place to go right now. (And my friend Carrie can vouch for that: I logged on to her blog this afternoon and saw she had posted about the very same thing!)

this makes me seriously angry

2008-09-14T13:55:00.005-05:00

Maybe this hits home because Sandra Cooley has cancer (originally breast cancer, metastasized to her lungs, shoulder, hip, liver, adrenal glands and now brain - whew). Maybe it hits home because I have a soft spot for the underdog. Whatever the reason, this piece by Pioneer Press columnist Ruben Rosario in today's paper has me steamed up and wanting to fight for this woman. She has qualified for Social Security benefits but hasn't seen any of the money yet. Why not? Because of "what can only be described in a family newspaper as asinine lunacy because of a decision her dirt-poor parents made six decades ago," as Ruben Rosario puts it.

The Department of Homeland Security is questioning her U.S. citizenship because she hasn't supplied enough documentation to prove she was born of United States residents and has lived here all her life, despite having been born a few miles across the Canadian border. It's a long story ... you'd do well to read it all, but here are some excerpts:

Sandra was born two years after Donald Gibney returned from serving seven years as a mechanic machinist on various Navy submarines that saw combat during World War II. One of the subs was the USS Bluegill.

The total bill for the seven-day stay at the hospital was little more than $58 and change. In those days, $3 — a substantial sum for such a family — would enable hospital officials to convert Sandra Cooley's birth certificate to reflect that she was the child of a U.S.-born citizen.

Her financially strapped parents decided not to pay and took their newborn home. Four other children — two before Sandra Cooley and two after — would be born in similar fashion, driven to the same Canadian hospital. Over the years, all but Sandra Cooley were able, without much problem, to successfully have their citizenship status changed.

But as Sandra's husband, Bill, notes, those approvals took place before the terrorist attacks of Sept. 11, 2001.

"I think that's what is going on here,'' he said.

• • •

A letter dated July 18 asked the couple to submit "a clear and legible copy of your father's Form DD-214. Discharge and Separation documents.''

The agency also noted that it needed evidence under Immigration and Naturalization Act Section 301 to prove her father was a U.S. resident at least 10 years before her birth.

They sent relatives' documents, including her late father's birth certificate, military records and a 1972 affidavit signed by him and properly notarized saying he was born and lived here.

Not good enough, the agency wrote back July 29.

It seems the family has not submitted enough proof.

"The Service notes you previously submitted copies of your grammar school report cards as evidence of your continued residency in the Untied [sic] States,'' the July 29 letter to the Cooleys states. "While noted, these documents do not establish 2 years of continued physical presence between the ages of 14 and 28.''

Short of the seven days she spent as a newborn at the Canadian hospital, Cooley has lived here all this time.

Not good enough.

The family also was told in one of the letters that the agency still needs proof not only that Sandra Cooley's father was a U.S. resident 10 years before her birth but also that he was 12 or older before that time.

And on it goes ... it is the most amazing ridiculous, unfair example of government bureaucracy I have seen in a long time. Is this woman a security threat to the United States? Is she a person who doesn't deserve to get Social Security benefits? Is she trying to milk the system for some selfish, personal gain? No, no and no.

Surely there must be something we can do to help her. I think it would be helpful if our congressional representatives from Minnesota got involved; so, to that effect, here is some information on how to contact Sen. Norm Coleman (click here), Sen. Amy Klobuchar (click here), and Rep. John Kline (click here), who represents the district where the family lives.

And while I'm not going to post Bill and Sandra Cooley's address here, I'll note that you can look it up on WhitePages.com, under William Cooley of Waconia, Minnesota ... if you feel moved to help them. I know I do.

brotherly love

2008-09-11T20:17:00.002-05:00

what a difference a haircut makes

2008-09-09T10:28:00.003-05:00

I love Daniel's long hair, but he looks so grown-up with short hair, too.

Nothing beats a favorite pair of striped socks to go with new, striped pajamas.

Daniel had a little trouble going down for his nap while I was at chemo yesterday. When I got home, both boys were sacked out in the living room. Ahhh ... quiet.

remembering charlotte

2008-09-08T16:51:00.004-05:00

I like to think we would have been good friends if Charlotte's life hadn't taken the turn it did, if she hadn't been in a bike accident when we were 20. As it was, she spent half her life in a coma, and a few weeks ago, she died.

We were only three days apart. Our parents had been friends in college. We only saw each other once a year, if that, when my family traveled to Astoria (a small town on the Oregon coast) to visit her family in their old, cozy house. But we never ran out of things to talk about, and sometimes we wrote to each other. We were both idealistic and sensitive. We loved books and dreamed of becoming writers, and I still have the books about writing that she loaned me the last time I saw her, during a visit at Christmas.

Seeing her obituary brings back those memories and makes me miss our budding friendship. And it makes me sad all over again that her promising life was altered as abruptly as it was. The picture her family chose makes her look like a young poet. I like to think she would have become a gifted writer, and that we'd talk over tea about the writing life during our trips to Astoria, and perhaps our children (if she'd decided to marry and have children) would play together. Is it wierd to say I miss her when I hadn't seen her for 20 years? I miss her.

God bless you, Charlotte.

clarifications about money and this blog

2008-09-06T15:07:00.013-05:00

The other day, I received an e-mail from someone whose name I didn't recognize, the main point of which was this:

I am really offended that you are asking readers for money. You are obviously an upper middle class woman with a home, a husband with a job, health insurance and all the economic advantages of middle class life. I would be far more impressed with your struggle if you weren't begging people to help support you. If you asked people to contribute to a general fund to benefit for all people with cancer(ie. The Tomorrow Fund or the cancer equivalent ot God's Love, We Deliver), to help families with far fewer means at their disposal than you have, I would respect it, but to ask people to send funds that only benefit your family seems really selfish.

Me? An upper-middle-class woman begging selfishly for money? Wow. I hope that's not how I come across on this blog.

Normally, I would not comment on something like this. After all, it's my blog, and I can do whatever I want with it, and if you are offended by it, you don't have to read it. At the same time, I don't want to be the cause of any misperceptions or discomfort that could be avoided. So I thought I would clarify a few things, in case anyone else has had the same impression as the e-mail writer.

• The information about our family's benefit fund has never been meant as a request for money. I put it there because people — many, many people — have asked us how they can help us financially, and I thought my blog would be a convenient place to let people know. It's a piece of information. It is not there as a means to solicit, beg, or otherwise ask for money. That said, I can see how it might have come across that way, which is why I moved it to a less prominent page with a link on the "If you're just joining us" sidebar.

• If you want to support us, that's great — we're grateful. If you want to support someone else, that's great, too. Steve and I are all for people supporting other cancer organizations and other people with cancer, especially those who are struggling financially. Go for it! (And while we're at it, let's work to end poverty, create affordable housing, improve public education, preserve the environment for our children, and elect ~~Barack Obama~~ your favorite candidate to the presidency!)

• This blog is not meant to be any type of public relations tool to further my cancer cause or "impress people with my struggle." I've been blogging for far longer than I knew I had cancer, and I will continue to blog about what's on my mind and in my heart. I'm happy to have you along for the ride, dear readers, but I am less interested in what people think of me than in how honestly and truthfully I am expressing myself.

Questions? Comments? Suggestions? Confessions? A debate on the purpose and responsibility of blogs? Let's discuss it via e-mail. I'm closing this post to public comments.

mayo

2008-09-05T19:45:00.005-05:00

Let me tell you, the Mayo Clinic is a beautiful place. Its architecture inspires a sense of calmness and peace. We sat in a sunny waiting area next to a long wall of curved glass that mimics the rolling hills and prairies of southern Minnesota. Very restful. And very big; I had to walk from building to building a couple of times to get things done, like having my blood drawn. They handle so many patients, but they were pleasant and efficient about ushering me through the system. Everything ran like clockwork, and I was called into my appointments on time.

The meeting with the oncologists went fine. They said they would be recommend the same treatments I've being doing with my University of Minnesota oncologist so far — the same chemo protocols, no surgery at this time. Where Mayo might diverge down the road is in the types of clinical trials they would offer if these forms of chemo don't work. So I'm going to keep doing what I'm doing for now, and when we come to a crossroads, I'll call Mayo and make decisions from there.

The doctors seemed encouraging, though. They said I'm handling chemo really well, bouncing back after each cycle, and as one of them put it, "I think we can push you pretty far." Which is a good thing in context; hopefully, it means we can buy a lot more time.

good days

2008-09-04T13:42:00.004-05:00

It's been one of those good weeks, the kind where I feel almost like I'm back to the kind of mother I was before I needed a cane to walk, before I needed a nanny to help me chase Daniel, before chemo made me tired. The kind where I have the energy to pack up the car and bring the kids to storytime at the Red Balloon (where Daniel freaked out because he didn't like the loudness of the singing and applause), or to play and pick out books at the library (where we got two of the Madeline books and a really cool one about trains). The Republican National Convention is in town, and the buzz in the air is palpable! OK, just kidding about that — I barely notice a difference over here in my little pocket of St. Paul, just five miles away from the action. But the air is chilly and fallish, and it's the kind of week where the fears of cancer are way in the back of my mind, and I actually dare to think, maybe it's all going to turn out OK.

Tomorrow is my second-opinion appointment at the Mayo Clinic. Tomorrow I have to face it all again, think about it. Tomorrow I have to shift my frame of reference back from mom to cancer patient, and maybe we'll even have to make some tough decisions about treatment. I'm not dreading it, exactly. More like I'm not really thinking about it very much. Not yet. Please, just a little more time to feel normal.

pregnant with cancer

2008-09-01T18:49:00.006-05:00

The New York Times Magazine ran an interesting article today about pregnant women with breast cancer. It appears that chemo may not be as verboten as once thought to treat pregnant women.

It's not the first I've heard about this. A recent article in The Oregonian profiled a pregnant woman who's going through chemo. And a friend of a friend, who also lives in Oregon, is doing it, too.

I identify with some of what these women go through: I was pregnant when I was first diagnosed with cancer. And I know what chemo is like. But I didn't have to do them at the same time. I can't imagine having had to go through that. Reading the stories of these brave women puts me in awe.

like, ok, i am so behind

2008-08-30T22:07:00.008-05:00

So I just joined Facebook because a couple of friends invited me to check out some pictures on their pages, and you have to join to be able to look. Come to find out pretty much everybody I know is already on it. Seriously?! Geesh, where I have been all this time? Is my head that far in the sand? Anyway, if you want to be my friend on Facebook, just, you know, friend me. The whole thing feels so junior high to me ... and yet ... I can see how it might get kind of addictive.

I also changed my profile picture because I was getting a little tired of looking at myself all chipper and grinning. It's from the same group of photos, which Steve took one day this winter when I was pregnant and still had hair.

Oh ... and a very nice person also made me a new header. (Her name is Nissa Nicole, and as she posted in the Comments section, she can do a header for you, too.) I just figured out how to get it up, and I'm still tweaking. Bear with me.

hooray, mommy!

2008-08-30T15:04:00.007-05:00

"I'm a man!"

Daniel's been saying that since he turned 2, with his little British accent: "I'm a 'mon'!"

Today, we were going over the fact that Daddy's a man, too, and Mommy's a woman.

Later, as I was puttering around the house, I heard him proclaiming, "Mommy's a woman. Hooray, Mommeeeeeeeeee!"

Steve promises he didn't set him up to it.

* * *
Daniel was settling down for his nap.

"I need my paci," he said.

"Let's ask Daddy if he can bring you one," I said.

"Steeeeve!" Daniel shouted. (He sometimes calls us by our first names.) "I need my paci!"

"Please," I whispered.

"Please!" Daniel shouted.

Steve brought the pacifier.

"What do you say?" I whispered.

"Thanks," Daniel said with a big smile. "Thank you."

He's just learning that. I'm not sure if he really needs to know how to say "please" and "thank you" at his age, but it sure makes his demands sound less ... demanding.

mashed potatoes

2008-08-29T11:23:00.004-05:00

This morning was the kind of morning that I've looked forward to having as I watch Daniel grow into more of a toddler. In short, we made mashed potatoes.

It was a messy morning that started with Daniel deciding he wanted to make some "soup." We went and sat in front of his play kitchen with a few carrot sticks, and I got out a couple of red potatoes I had on hand, and we used plastic ("safe") implements to try to cut up the potatoes, which took forever, but we finally accomplished it.

At one point, Daniel strained and grunted and said, "I can do it!" And then he popped his potato in half, and I was so proud of him.

We washed the potatoes and carrots in a strainer, then put them in some water to boil. A while later, when they were soft and cooled off, we sat on the floor and mashed them with a fork. Daniel added plenty of salt and pepper, and I added butter. And then we ate them (until Daniel poured his milk into them and made them all runny and then poured them all over his high chair tray).

The whole process held our attention for a good bit of the morning. I loved it. I love watching concepts click in his head. I love seeing his sense of accomplishment. I love that we can do things like this together now.

a year in a life

2008-08-27T20:02:00.009-05:00

This week has been on my mind for its memories of where I was a year ago at this time.

One year ago yesterday morning, I got the phonecall that changed everything. Suddenly, I was not only with child, but with cancer.

One year ago this afternoon, we met for the first time with Dr. T., the surgical oncologist who got the ball rolling and removed my tumor — for good, I thought.

And next Friday, the day I go to the Mayo Clinic for a second opinion on my treatment options, will be a year to the day (though not date) after I had my surgery.

It's hard to believe so much has happened to turn my life over in just a year — good and bad. As horrible as this cancer has been, Ben's new presence in our lives has been as much of a blessing.

When I think of my cancer, I think of it in two parts.

Part 1: Last August and September, when it was in my abdomen, removable through surgery, and I was still in my first trimester of pregnancy with Ben.

Then a lull, where I healed, nurtured my pregnancy, gave birth to our beautiful baby, and tried not to think of worst-case scenarios.

Part 2: This April, when Ben was just three weeks old and I learned the cancer had metasticized to my lungs and hip. That was when chemotherapy and radiation entered the picture, and low success rates and the very real prospect of my odds.

And here I am now, still waiting, still not knowing what will happen, still scared, yet still living my life and loving my family. Cancer is not all I am. But in the past year, it has shaded our life in ways that we can't turn back.

ben at five months

2008-08-26T10:03:00.005-05:00

Five months seems like a pivotal age: Daniel was five months old when I started taking him to Early Childhood Family Education (ECFE) classes and first met the kids who would become his play group (and their parents who have become friends).

Daniel was also around five months old when we bought the Ergo and started wearing him around in it — and now Ben's neck is strong enough that I can wear him without the infant insert, and he loves it. Sometimes he naps in it; other times he just stares up at me with his wise little eyes and smiles. I love wearing him in it, too. I can walk around with my cane in my left hand and still have my right hand free to carry a cup of tea (carefully) or water the garden. And in a small way, it lets me feel a closeness with him that I had missed from having to wean him from breastfeeding so early.

In another month or two, we'll be feeding him solids, and he'll be sitting up by himself. He's growing up right under my nose. It seems like time is going by faster than it did with Daniel.

daniel is 2 today

2008-08-25T21:37:00.009-05:00

No longer can I call myself the mother of "two under 2" — my sweet little big boy has turned the corner. (We celebrated Saturday, but today is his actual birthday.)

He loves anything on wheels — planes, trains, automobiles — and anything that resembles a saw, screwdriver or weed-whacker. He got a toy chainsaw for his birthday this morning (thanks, Aunt Sue!), and he hasn't put it down all day. He even napped with it this afternoon, and as I write, it is lying next to him as he sleeps. How ironic that Steve used to joke, before he was born, that we would name him Chainsaw.

Here he is with a 4-year-old neighbor pal down the street, who also happens to be into tools.

Happy birthday, our precious little boy. You light up my life!

alone time

2008-08-25T17:17:00.005-05:00

I went to chemo all by myself today, and it turned out to be a very productive, relaxing afternoon. I used to cringe with dread when I saw the signs at the oncology clinic for the "infusion rooms," but now I think it might be OK after all. You get a comfy, adjustable chair with a table next to it and a curtain to pull around your cubicle for privacy if you want it. It sure beats walking around with a heavy backpack full of toxic liquids for a full week. And the nurses who work there are incredibly nice.

Here's what I got done:

* Read yesterday's New York Times.
* Caught up on some thank-you notes.
* Sorted through all the records from my chart to cull out the reports I need to bring for my appointment at the Mayo Clinic on Sept. 5.
* Started a romance novel by Emma Darcy. (What a great pen name!)

I've seen some children in the infusion rooms, and I notice how well they are treated by the nurses. Stickers, juice, soothing words ... it's good to see. I can't imagine what it would be like if Ben or Daniel had cancer and had to go through chemo. Any child, for that matter. It puts things in perspective and makes me feel less sorry for myself.

playing nancy drew

2008-08-24T10:56:00.010-05:00

Steve and I tried doing some of our own detective work yesterday and, posing as parents with different names (I even set up a new e-mail account!), e-mailed the stroller seller and asked to look at the stroller in a public place. We waited all afternoon to hear back, nerves on edge, discussing how we'd confront whomever showed up ... but there was no response to the e-mail. Yesterday evening, using my own name and e-mail address, I sent her a note ("Are you the pathetic and desperate loser ...? If so ...") and got this reply almost immediately:

Emilie,

Wow. I am most certainly not that person. Our family lives in Hinkley, MN and we purchased our B.O.B. off Ebay about 6 months ago and I had figured it would be much easier to sell while we are down here in the cities for the fair since we just purchased a new one in a different color. I am so sorry to hear what your family is going through and the nerve of someone to steal a stroller.. Who does that? That person will get what is coming to them for sure, I am a strong believer in karma as well. We will keep your family in our prayers.
God Bless,

[Female name]

After reading that, I went back to Craig's List and saw that the ad was gone. Either she sold the stroller, or she got scared and pulled the ad. It's a nice enough note, but I'm still skeptical about her story. For one thing, her Craig's List ad said she bought the stroller new, yet this e-mail says she got it off eBay. Besides, BOB strollers aren't too common on Craig's List, and I don't buy the coincidence. (And I wrote back and told her so.) But since I haven't been able to find the serial number for the stroller, and since we haven't been able to see the stroller in person, I have no proof that it's ours. Just a gut feeling. I think it's time to let it go, though, and enjoy the rest of the weekend.

* * *
More correspondence ... I am having trouble letting this go, and I am plagued with doubts about whether I am right or wrong about this person. Why I am posting all this on my blog, I have no idea, especially when one of my notes is shamefully rude and never should have been written. I should just stop, shouldn't I?

This is the one that really was beneath me:

[Name],

Only you know whether you're telling the truth -- there's no point in trying to convince me with a nice note. BOB strollers aren't too common on Craig's List, and to see one fitting the exact description of mine listed just two days after it was stolen? Ha. I will remain skeptical until I see the stroller, and I highly doubt that's going to happen, right?

Emilie

Emilie,
How dare you continue to harass me about my stroller that you apparently think is yours. Convince you with a nice note? I was being nice because your story makes me sick and I felt bad for you. I know how sickened I would feel if someone stole my stroller from me, but then, I wouldn't leave my $400 stroller sitting in front of my house, ever. But regardless, I sold my stroller yesterday so I suppose you'll have to remain skeptical for the rest of your life. Hopefully you do find your stroller, just so you can feel like crap for jumping to conclusions and being completely rude to me. Good Luck!

[Name]

And, suddenly wondering if all this has been a giant coincidence after all but not ready to throw in the towel completely, an attempt to make peace.

[Name],

I admit the tone I took was rude and beneath me, and I sincerely apologize if you are an innocent person blindsided by being on the receiving end of this exchange. I can understand how that would make you feel pretty crappy. I can only hope that you understand how I must be feeling right now. I am still sick and angry about the theft of our stroller and still too stunned about the extreme coincidence of seeing an exact same description of one being sold on Craig's List two days later. I do realize that I may be wrong, but I also can't completely dismiss the possibility that I'm not. Perhaps you would have the same feelings if you were in my shoes. You seem like an empathetic person in your e-mails, so I hope you can understand that.

I know that over time, as my anger and sorrow die down, I will have a better attitude toward this whole situation. It's just a stroller, after all, and there are many more important things in life than that type of stuff. God knows, I of all people should know that. I just had a real sentimental attachment to this particular stroller. But I won't digress about that.

I hope this helps you understand where I'm coming from.

God bless,

Emilie

P.S. Just so you know, people in my neighborhood do leave their strollers out in the yard when they take their children inside, and sometimes they even leave them there for a little while, believe it or not. It's that trusting kind of neighborhood, which is why the theft was so surprising. We never leave it out overnight, but it only takes a split second to steal something.

Please, make this stop.

eat, play, love

2008-08-23T18:43:00.005-05:00

Choo-Choo Bob's is a little train store in St. Paul. It offers a great birthday party package, and we had Daniel's 2nd birthday party there today.

Kids love Choo-Choo Bob's because there are train tables set up all across the back of the store, and kids can play there for free — their very own island of Sodor! Daniel and a half dozen of his toddler friends had such a great time playing that it was almost a shame to call them in for snacks.

The party package includes a cake (a very tasty cake from La Patisserie in St. Paul). Daniel had been talking about his birthday cake all morning, but once it was in front of him, he didn't quite know what to do. He was very somber indeed.

He soon got into the spirit, however. Within 20 minutes, he was so jacked up on sugar that he couldn't sit still to open his gifts. It was kind of funny but kind of sad, like seeing someone on a bad drug trip.

Benjamin slept through much of the party. Once he woke up, he got some good face time with his grandpa.

I had a good time, too. For those few hours, I wasn't a woman with cancer. I was just a happy mom.

well, well, well ...

2008-08-23T17:34:00.008-05:00

Take a look at this newly posted Craig's List ad, which I am posting here in case it gets taken down:

B.O.B. Revoloution [sic] Stroller - $200

Reply to: sale-809524642@craigslist.org
Date: 2008-08-23, 12:48PM CDT

Up for sale is my B.O.B. Revolution Stroller Strides Jogging Stroller (Red & Gray). It is in great condition with minor marks on the frame. Just washed it. We live up north but are in the cities for today and tomorrow staying with some friends and doing the Fair thing :) If interested, we can meet you at the fair or, we are staying in Minneapolis and should be done with the fair around 8 and can meet after that. Please act quickly, we will be heading home on Sunday night and my husband really doesn't want to bring the stroller back with us. $200 OBO Cash Only. Please do not try to completely low-ball me, we paid $400 + Tax new and these strollers are worth every penny. Sorry, I don't have a picture.

"Please act quickly ... heading home on Sunday night" — ha. My gut is screaming that this is our stroller. The picture (from the manufacturer) looks exactly like ours. What does a person do with this? The police department is being surprisingly (or perhaps not so surprisingly) unhelpful. My husband wants to set up a meeting, go confront them, but that doesn't sound very safe to me. Maybe just a scathing e-mail ...

i am so pissed

2008-08-21T22:01:00.010-05:00

Some f***ing a$$hole stole our favorite stroller from our front yard tonight. Steve came back from the park with Daniel before dinner and left it out front, and he just noticed it's gone. Who would do something like that? Who? We've left it out there plenty of times, never thinking we had to worry about theft in this neighborhood, but I guess we learned our hard lesson.

It's our red BOB Revolution. I could just cry. All those walks I took with Daniel around the neighborhood, all those lattés cradled in the cupholder, all the groceries crammed in the basket underneath from trips to Mississippi Market, all the Mass programs tucked into the pocket after family walks to church. I loved that stroller. It was more a part of me than I imagined because right now I feel like my heart's been ripped out.

The police dispatcher said to call back tomorrow to file a report. Steve says we should look on Craig's List to see if anyone tries to sell it. I just don't have high hopes for ever seeing it again, though.

round four of chemo ... not so bad

2008-08-18T17:06:00.006-05:00

There's nothing like an uneventful morning in a chemotherapy cubicle to raise a gal's spirits. Seriously. My friend Lisa and I were there at 7 a.m., and when we left three hours later, it was more like we'd had a few hours to sit in comfy chairs, sip cups of hot tea, eat homemade banana bread, read the newspaper and chat. I didn't have any reactions to the Gemzar. (The last time I was in one of those infusion rooms, my blood pressure crashed, I broke out in hives and almost passed out — twice — and they had to take me off the drug and switch me to another one.) This afternoon, I'm a little tired, and I expect I'll feel a little fluey for a day or two, So far, so good, though. (Next week I go back for a double cocktail of Gemzar and Taxotere.) It sure beats carrying my chemo drugs around for seven days straight, having them flow continuously through my body all week, like I did for the last three cycles. Now all I can do is hope this works.

Check out this description of Taxotere, by the way:

Taxotere belongs to a class of chemotherapy drugs called plant alkaloids. Plant alkaloids are made from plants. The vinca alkaloids are made from the periwinkle plant (catharanthus rosea). The taxanes are made from the bark of the Pacific Yew tree (taxus). The vinca alkaloids and taxanes are also known as antimicrotubule agents. The podophyllotoxins are derived from the May apple plant. Camptothecan analogs are derived from the Asian "Happy Tree" (Camptotheca acuminata). Podophyllotoxins and camptothecan analogs are also known as topoisomerase inhibitors.

Periwinkle? May apple plant? Asian Happy Tree? What is this, chemo by Aveda?

round and round and round we go

2008-08-18T17:01:00.000-05:00

I read in the paper recently about a controversial new roundabout at an intersection in suburban Woodbury (well, more like where suburbia meets rolling farmland, which seems like an odd place for a roundabout, but apparently it's very busy during rush hour). Accident rates are higher now than when there was just a plain old stop sign at the intersection. The article said that there are basically two types of drivers contributing to accidents: the aggressive ones who don't yield at the edge of the roundabout to traffic already in it and the timid ones who drive slowly and aren't sure which lane to be in.

Sunday morning, a letter to the editor claimed that the new roundabout is too small, at least compared to the large ones in France. And I said to Steve, "I want to see this roundabout they're talking about." Because Steve and I have driven through our fair share of roundabouts, too, in Ireland, and we thought they were pretty smart once you figure them out. You can get through an intersection without having to stop and start (except for the one-time yield), even in rush hour. I figured, what can be so hard about this Woodbury roundabout?

So we loaded up the car, and we investigated. We drove through the roundabout not once but four times, each from a different direction, each time taking a different turn to get out. Our concensus? This roundabout is a piece of cake! It's not too small. It's very clearly marked. Even if you get in the wrong lane, you can usually still get out — and if you can't, you can just drive another loop around the middle until you figure out where you are.

After our roundabout adventure, we drove to a little park in downtown Afton, where we had a picnic lunch. Everyone had a good time ... even Ben, who napped on a blanket in the warm, afternoon breeze.

leroy sievers

2008-08-18T16:52:00.004-05:00

I wrote a few posts back about Leroy Sievers, who wrote NPR's My Cancer blog. He died suddenly Friday night, and I am taking a few moments here to honor him. I scrolled through the hundreds of comments left in the wake of the announcement, and it's clear how much his honest, simple writing touched people. Many of the commenters were people dealing with cancer themselves — either in themselves or in a loved one — and they spoke about how Leroy and his wife, Laurie, had been sources of inspiration for them, even role models. For me, too. I will miss Leroy's daily thoughts about everything from doughnuts to the Olympics to hospice care. I know he struggled and was facing the end, but it feels like it wasn't quite time for him to go yet.

storm

2008-08-16T20:06:00.004-05:00

There was a big, early-evening thunderstorm this week, and the sky was seriously this orange. I've never seen it quite like that before. It was eerie and exciting.

the default

2008-08-15T20:51:00.007-05:00

Daniel saw the bottle of wine on the table at dinner tonight.

"That's wine," he said, pointing.

"Yes, that's wine," I said.

"I want some wine," he said.

"That's for Mommy and Daddy," Steve said. "You can't have wine until you're 21."

"Or maybe you can have a little glass at dinner when you're older," I said, with a pointed glance at Steve.

To Steve I added, "Please, I hope you won't be one of those parents who refuses to let his kids have a few sips of wine every once in a while."

And I realized I'd slipped into the default again — the assumption that I won't be there. It's the way my mind has been tilting for a couple of months now. The boys as teenagers. Learning to ride a bike. The first day of school. I have to force myself to reimagine the scenario with myself in it. I do force myself. I don't want the default visualization to win. But it is the default. It's where my mind goes automatically. I wish it weren't so.

* * *
Later, Steve and I watched the seventh and final episode of the incredibly fascinating HBO miniseries John Adams. It was a sad episode: John and Abigail's daughter, Nabby, dies of breast cancer. Then old age catches up, and Abigail dies, and finally John himself, and Thomas Jefferson on the same day. Watching John and Abigail together after so many years of marriage, holding each other as they mourned their daughter's death, I said to Steve (with tears in my eyes), "That's how I've always imagined us as an old couple, still loving each other and supporting each other after so many years together." But I'm afraid we won't get to that place I've dreamed of. It's the default again.

I couldn't stop crying after we finished watching John Adams. Steve and I went into the boys' room and watched them sleep. Daniel was tossed and tousled on his race car bed, his limbs flung out in every direction. Ben lay in his crib with his arms over his head, the way Daniel used to sleep. Steve put an arm around me while I wept, and I wondered how much longer I will have to love them, these three guys who fill my heart.

synchronized diving through 2-year-old eyes

2008-08-14T11:16:00.004-05:00

... must be kind of scary.

We turned the Olympics on last night. Daniel watched the synchronized diving for a minute or two, and as soon as he grasped what was going on, he started to get distressed and began to cry, "I don't like it!" As far as we could tell, he was concerned about the people falling long distances into the water, disappearing, maybe. Steve turned off the TV and held him and explained, "They're OK."

"They're OK," Daniel repeated, and continued to repeat for the next 15 minutes as he walked around the house. "They're OK." "They're OK."

changing course

2008-08-12T11:44:00.008-05:00

The results of yesterday's CT scan weren't very good. More tumors (two in particular) are growing in my lungs. Miniscule or undetectable on my scan two months ago, they've grown to at least a centimeter or more in diameter. Like last time, the chemo was able to halt (or slow) the growth of the larger tumors, but it hasn't stopped these new ones, which means they must be resistant to this particular form of chemo. So the doctor isn't going to have me continue the chemo I've been on. Instead, I'll start another combo next week. (Edited to add: The new drugs are Gemzar and Taxotere.) Whether the new chemo will stop the new tumors or even the old ones is anyone's guess.

The thing is, it's all a guessing game from here on in, like shooting in the dark. This type of cancer is so rare that there isn't really a standard course of treatment that's known to work. The chemo drug combo I was on this summer is typically the one the doctor tries first, but if that doesn't work, he'll just try a couple of other combos and see if they work. The chances for success aren't as high, but Dr. S. said you never know when something might work. He agreed with us that this is probably the time when getting a second opinion would be a good idea, at least so we feel like we've explored our options. I'm going to call the Mayo Clinic and see if we can get an appointment there. That's as far as I'm allowing myself to think right now. I can't think about going to Houston or Boston or the other sarcoma centers yet. I wish I had the power and clout and money that Edward Kennedy did to call in all the national experts to my bedside.

I'm feeling pretty dejected about this news. Kind of numb, not really fully processing it, even a day later. The grey rain that's been falling steadily all morning feels like it's falling right into my heart. As soon as I finish posting this, I'm going to go crawl back into bed (with Daniel, who is sleeping there), sip a cup of tea and read my Nora Roberts novel.

tidbits

2008-08-11T11:42:00.008-05:00

Had a CT scan this morning to see how the last two rounds of chemo worked. Doctor's appointment this afternoon to get the results. If all goes well, I'll start another round of chemo soon, maybe even today. I think I'm ready. I hope I am.

A knock on the door today. Daniel had been playing with my car keys. A tall young man in his 20s or 30s, dark hair, stands there. "I really hate to ask this, but do you have a child who's been playing with your car keys and honking your horn from inside the house?" Uh, yup, that would be us. Terribly sorry ... I'll try to keep them away from him (wresting the keys out of Daniel's hand, prompting a loud outcry). What a way to meet the neighbors.

Daniel and I go to L.'s house last week to meet her new baby, the younger brother of one of the boys in Daniel's playgroup. Midway through our visit, Daniel stands up and announces, "I want to get going in the car." Moments like that, I'm astounded at how much my little boy understands, knows, is growing.

My eyebrows and eyelashes are falling out. I have two lower eyelashes left on one eye, five on the other. Haven't counted the top lashes, but a little bit more. My eyes feel sticky when I close and open them. I feel like a freak. Steve and I have a rare, wonderful date yesterday afternoon on the patio of W.A. Frost, having drinks and eating a cheese plate. He says he doesn't notice my eyelashes, just my beautiful brown eyes. I love that man.

At the grocery store last week, two upbeat women are accosting every soul who exits the store, asking them to help "save the children" by donating to their charity. I walk out, and the woman nearest me takes a glance at me (cane, cancer hat, freakish eyes, no doubt) and just says, "Good afternoon." No pitch, no request for money. Why? It feels wierd.

Inside the store, I'm standing in front of the pre-bagged salad section, wondering which kind to get. A woman next to me looks at me and then asks, "Can I help you get something down?" I'm thinking, do I look like I'm incapable of reaching out and picking up a bag of salad? I want to snap at her: "I'm perfectly capable of getting my own salad, thank you." And I almost do, but then I soften it at the last minute to something like "I'm fine, thanks." She was only trying to help.

dream :: the library

2008-08-09T08:54:00.004-05:00

Last night's dream is sticking in my head.

I am in a library with my sisters. It's a big, marble library with several floors, like the downtown libraries in Portland and St. Paul, but it's in a town we don't live in; we are visitors. We are looking for a place where I can return some books and CDs. One of my sisters leads us into one room, but there's no return bin there. I lead us to another room, and there is a desk with a woman behind it taking returns. I pull my books and CDs out of the bag a few at a time and place them on the counter. There are other people there ahead of me, some young women. My sisters are standing behind me but are pressed up so close that I feel crowded. I use my arms and elbows to push them back and make some room so I can breathe.

Then we go out into the lobby so we can leave. But there are some men in the lobby with huge dogs who are doing tricks with the dogs. The men are very athletic and are practically throwing the dogs around, like circus perfomers, occupying two different "rings" on the floor of the lobby. People are standing around the edge of the rings, watching. My sisters and I are getting split up. I am standing at the back of the lobby trying to figure out a way to get out, but the dogs keep coming close to me, and they scare me. Finally I manage to find a way to the front and out the doors. I meet up with my sisters again. Susanne says, "Emilie, I admire the way you handled that with grace and humor."

We walk down the street. I am walking without my cane, and I am aware that this is unusual. I know that I have cancer, and that I've previously had to use a cane. I can still feel a little discomfort in my hip. I wonder why I'm suddenly able to walk freely and how long it will last, but I embrace it while I can.

I woke up believing I could walk and was kind of bummed when I realized it had been just a dream.

the beginning of the end of summer

2008-08-08T09:37:00.005-05:00

This week has given me that feeling I get when I see the first leaf fall from the tree. The weather has cooled off a bit, from muggy to blue-sky glorious. The first fall L.L. Bean catalog arrived in the mail. And on Tuesday, we said goodbye to our summer nanny, Kiersten, who started medical school orientation the next day. I've chosen not to blog too much about our nannies here, so I won't say anything more except that we loved her and will really miss her. Our new nanny, Anna, started on Wednesday, and we like her, too. Interesting how the change from summer nanny to fall-and-beyond nanny has felt like such a big transition — not just in people, but in seasons. Before I know it, I will be pulling out the fall sweaters and wearing socks again.

our $400 bathroom makeover

2008-08-06T09:34:00.007-05:00

The weekend my sister Ellen was here, she and I painted the bathroom. I'd had high expectations of getting it done before she arrived, but I was on chemo, and we spent that whole week with blue masking tape on all the edges and splotches of paint samples on the walls. It was great to have Ellen's help. We made a good painting team!

Steve and I went into the spring season fully expecting that this would be the year we remodelled the bathroom. It was the most challenging room in the house when I moved in nearly six years ago. The terracota tiles were matched by an equal shade of intense, pinkish-melon walls, and it felt oppressive. (I don't have any "before" pictures here, but you can click here for an idea.) The light fixture was ancient and flourescent and sometimes took 20 seconds or more to flicker on. And the mildew between the tiles on the shower walls was just insidious. Steve detested that the most. I detested the overbearing color.

But things happened (cancer, new fence), and we put the remodelling plans on the back burner. In the meantime, we've tried to make the most of some basic cosmetic changes. I was inspired by an article in Real Simple magazine that showed bathroom makeovers without the need for remodelling. A new coat of paint and some updated fixtures and accessories can go a long way.

So we lightened up the paint on the wall above the tiles, using a rich, creamy color (Benjamin Moore's Antique White), and it really opens up the room. (Ellen said it felt "spiritual, like a Jewish temple" — not that she could explain what that meant; it was an impression she had, and she went with it.)

Late last year, we ripped out the ugly light fixture and replaced it with a more modern one. Unfortunately, this left gaping patches of unpainted wall and screw holes where the new one wasn't able to overlap the borders of the old. The paint job, along with some sandpaper and Spackle, took care of that. (See right photo.) And, after I got spoiled during trips overseas, we replaced our fixed shower head with a handheld one (mounted overhead so it can be used as a fixed head), which feels like a little luxury.

And finally, we got rid of the mildew. Loathe as we were to contaminate the house with highly toxic cleaners, I did not say no when one of the women who cleans our house once a month (thanks to a generous and wonderful gift from some friends) asked me if I wanted her to scrub it out with some heavy-duty bleach cleanser that left an odor wafting through our house for about 20 minutes. What magic, though! Steve's jaw dropped when he got home and saw it. It was like having a whole new tub! (I wish I could remember the name of the product; I think Clorox makes it.)

Now I've grown to be at peace with — even a little fond of — our bathroom. The total cost? Probably around $400, including what we paid the electrician to get the light fixture installed. There's still more I'd like to do, but ... knowing we can wait on a complete overhaul? Priceless.

(And while we're on the subject of bathrooms, you must take a look at my friend Vanessa's new downstairs bathroom. Gorgeous!)

feeding time

2008-08-05T16:02:00.000-05:00

First the bottle ...

Then a good burp ...

Then Daddy's turn ...

this is the easy part

2008-07-31T17:10:00.006-05:00

Lately I've been reading a cancer blog written by NPR's Leroy Sievers, who has brain cancer. Steve heard him speaking on a radio program recently and told me about him. He's pretty far along. These days, he's writing about things like whether to get hospice care and how he sold his Jeep because he hasn't driven it for six months. The other day, he posted something his wife wrote: "So I guess we've been through the 'easy' part of this experience ... it's going to get hard from here on out."

And I realized: I'm still in the easy part. Sure, chemo sucks (really, really sucks). And I don't like that I have to get around with a cane and can't go for long walks anymore and am so much more tired than I used to be. But I'm still in the part of my life — the part of this journey — where I'm still fully focused on living. I can wash my own face. I can walk downstairs to do laundry. I can drive places on my own. I can host a party. I can lift my boys up in my arms. I can (sometimes) have sex with my husband. Sure, dying is a fear on the horizon, and sometimes the idea of it petrifies me. But the prospect of actually going through the dying process hasn't become a reality yet; the doctor hasn't told us to get our affairs in order or take a cruise. We're still working on keeping this thing at bay, and even within the crappy margins of success that exist for this sarcoma, there's still hope that maybe I'll get more time. So we haven't had to turn onto the hard road yet, the one where you know where it ends, and you have to actually face it.

Last week, Randy Pausch died, two years after finding out he had pancreatic cancer. You may have heard of him; I guess he got a lot of press for his book, "The Last Lecture," based on the talk he gave last fall at Carnegie Mellon University. I'd read it this spring and admired the way he dealt with his terminal diagnosis. He was honest about how hard it was to prepare his family for his death, yet he was also pragmatic. He did the things he needed to do to make sure his wife and kids would remember how much he loved them. He took them on trips. He made lots of videos and wrote them letters. He was real, and full of enthusiasm and positivity. And he died. He didn't just go through the motions of preparing to die and then get miraculously healed, as if his positive attitude and fighting spirit were going to cure him. Don't get me wrong: I'm terribly sad for his family, and if he'd somehow managed to live, I would have held him up as a reason for hope. But he did die, like many cancer patients do. He didn't escape the hard road.

I get kind of tired of hearing well-meaning people tell cancer patients that it's important to keep a positive attitude, as if that will turn the tide of the tumors or make chemo more effective. It's a tall order. No one can stay positive all the time — not me, for sure, and I know it's normal to go into that black hole from time to time. Sure, some people are naturally more optimistic than others, but I refuse to buy into the notion that it's the optimistic people who live and the negative people who die. Positive people die of cancer all the time ... witness Randy Pausch.

So anyway ... I'm keeping an eye on Leroy Sievers. He writes honestly and simply about what it's like to enter that hard part of the journey. I feel like I need to know what it's like because I may be going there sooner or later. For now, though, I'm very aware that I'm still in the easy part, no matter how hard things seem.

ben's baptism

2008-07-27T22:13:00.011-05:00

It was a beautiful service. Benjamin and a handful of other babies were baptized in the middle of the regular Mass. Our church in St. Paul gets the babies naked and dunks them waist-high in the font while all the kids gather round and watch. The priest scoops water over the baby's head and recites the words of baptism while he is immersed. Ben didn't bat an eye. He likes his baths.

He's smiling now, but I hope our priest is still smiling when our two boys run and squawk noisily all over the back of the church on Sundays! (Yes, that's my "nice" wig.)

The godparents: my sister Ellen, who flew in from Oregon, and Steve's brother Bruce.

We had a little gathering of mostly family over afterward. My parents, along with my sister, are here from Portland, so they got to catch up with Steve's side of the family. Our friend Jennifer prepared a light lunch and had it all laid out for us when we got home from church. She rocks. If anyone is looking for a caterer, let me know.

Ben wore the same romper Daniel wore at his baptism. My friend Anne borrowed it for her son Aaron's baptism, too. It was kind of sad to take it off, knowing we won't be using it again. I wonder if any future boys in our family will wear it.

Steve took this picture of me with Ben, and I kind of like it.

So many photos in a day can make a baby cranky.

four months old

2008-07-26T21:24:00.003-05:00

Happy birthday to Ben, who is growing into one of the most good-natured babies I've known. He has a sweet smile for everyone and laughs when we kiss his cheeks. Tomorrow he will be baptized, so this is a special weekend for him.

my blog as a book

2008-07-23T18:05:00.009-05:00

I'd been looking around for a way to print out my blog or convert it to book form so the boys will have a way to know and remember me. It's one of those "just in case" goals, kind of like organizing the finances and planning my funeral. I don't like to go to the "just in case" place too often, but boy ... I did get obsessed when I found Blurb.com! I may not be into scrapbooking, but I think online bookmaking may be right up my alley. I wonder if there's a way to get paid for that.

I cloistered myself in our office for a full day and night working on the first volume, which is my posts from 2006 — 200-plus pages. Volume two, all my 2007 posts, took a little less time and is only 128 pages.

For anyone thinking about doing this, the software is free and very easy to use. It imports all your blog posts and photos, in chronological order if you choose, and puts them on pages for you. Then you get to edit and tweak the layouts. There are tons of options for layouts, colors, fonts, etc. I found that because I tend to shrink my photos fairly small before putting them on my blog, I wasn't able to run them very large in the book (unless I were willing to reimport all of them from the original ... which I was not, except for cover art).

The first volume came in the mail yesterday. They weren't cheap (About $70 per book, and I bought two — one for Daniel and one for Ben and unlimited access for Steve, of course), but I'm so happy with the print and paper quality. I uploaded and ordered volume two today, and it should get here in about a week.

a night out for sarcoma survivors

2008-07-23T10:56:00.011-05:00

Monday night, I took a nausea pill and got myself dressed for the first time since Friday; after dinner, we all piled into the car and went to the Rein In Sarcoma Party in the Park. (The poster image is of sunflowers, a symbol for sarcoma healing, apparently.) It was a nice night out. The weather was pleasant, the band sounded good, and there were plenty of family activities. I was wearing my chemo backpack and feeling a bit tired, but neither of those things kept me from enjoying myself. We even ran into a family we'd met in ECFE class this spring.

At the bubble-blowing station, Daniel found (and kept ... *gulp*) a battery-operated bubble-blower that he now refers to as his "weed-whacker." A push of the button turned on a low-humming fan that sounds a lot like the saw noises Daniel likes to make. He's shy in crowds, but he was in heaven, aiming it at people very quietly and unobtruvisely, his eyes steadily trained on whomever was in his view, like a little Jedi knight.

The highlight of the night was free rides on Como Park's 94-year-old carousel. I decided I wanted to take Daniel on it. Steve wondered if my stomach would be able to tolerate the spinning. I wondered if I'd be able to climb onto a horse with my bad hip. We both wondered if Daniel would freak out. Yes, yes and sort of.

The first horse I put Daniel on was too high and too big, and when I put him on top of it and stood next to him with my arms around his waist, he immediately slunk down toward me saying, "I don't like it."

The carousel operator came by and told us the bench seats were full, but gestured to a small horse in the middle row a few yards back. We made our way, and I put Daniel on that horse. He responded the same way to the horse, but I was pretty sure he'd do OK if I were sitting on it with him.

The carousel operator, who had seen that I had difficulty walking, immediately commissioned the two guys on either side of me to help out. Lucky me: They were both good-looking and strong! (And dads, riding with their kids.) One of them helped me up while the other held my cane.

As I got settled, the guy who helped me up said, "Hip or leg?"

"Hip," I said. Turns out that at a sarcoma picnic, you aren't too far from people who have been there, done that. He'd had it in his leg, had surgery and chemo and all the works. We traded war stories as the carousel went around, and my self-consciousness about having to ask for help because of my hip evaporated.

Daniel's face went from a frown to a smile. He liked the up-down motion, and he had fun seeing his dad wave at him every time time he came into view. Later, though, he told me the horses were "kind of scary."

As we loaded up the car to go home, the band was playing Gloria Gaynor's I Will Survive, with a few lyrics rewritten for the cancer crowd. It was kind of hokey, but I found myself crying anyway, quietly, sitting on a bench behind the stroller. A woman in her 50s or 60s came up to me and said, "Honey, I have two kids, 22 and 25, and when I was your age, I looked just like you. And now, here I am." And then she smiled encouragingly and walked away.

More tears, but not bad ones.

one day left

2008-07-22T16:31:00.010-05:00

I have to go to the emergency room again. My blood pressure is too low, and I reported feeling dizzy when I stood up, and the home health nurse called my oncologist's office, which called back only after the nurse triage office closed, so I can't go there, so I have to go to the eff-ing emergency room, maybe just to get rehydrated. Steve is going to come home early to take me there, and the nanny said she can stay late, so thank God that works out.

This round of chemo really kicked me to the curb. I didn't get dressed all weekend. Just too tired and foggy and nauseous. Just lay in bed and read romance novels intermittent with sleep. Today I got dressed around noon. I'm off one of the drugs but have another day on the other. I hear it starts to affect you more with each cycle, which scares me. How much of this can I take?

Addendum, next morning: Thanks for all your good wishes! Everything was fine. They couldn't find any other clues to explain the low blood pressure, and by the time I arrived at the hospital, it was back up to the low side of regular. They took blood and urine samples and fed me a sandwich. I asked them not to put an IV in if I could take fluids orally, to which the doctor agreed. Steve and I got to watch some HGTV, and I went home with instructions to drink lots of fluids. Today I had enough energy to weed and water the garden. Four hours until I'm off the pumps. Yeah!

round three

2008-07-16T15:07:00.004-05:00

This morning, the nanny and I loaded the boys into the car and went to see the ducks at St. Kate's. It was the last taste of normal for the next week. This afternoon, Ryan, the nurse from Fairview Home Infusion who has hooked me up to my chemo pumps each month, came over and hooked me up again. As I write, the chemical taste of the drugs is swirling around my mouth, and I'm slowly feeling them seep through my body. I had a tiny taste of nausea in my throat earlier, which worries me. It didn't start until the second or third day last month. I hope I hold up OK this time.

A woman with whom I used to discuss dreams dropped off some books last night while I was out to dinner with some friends. (We went to the new Salut, where Sidney's used to be, on Grand Avenue.) In the bag was a meditation for focusing on best-case scenarios. It was exactly what I need right now. I've been finding myself drifting too often to the worst-case scenario, almost as a default. I have to force myself away from it — to imagine, for example, that I will still be around when we're deciding where to send the boys to school, or when they become teenagers and we have to talk to them about sex and drugs. So. Best-case scenarios.

At acupuncture last week, the acupuncturist, Susan, suggested that I imagine myself as an 80-year-old woman and have a conversation with that woman. As I lay on the table, I tried it. I found that my 80-year-old self did all the talking. It was comforting and almost mystical, and when I told Susan about it afterward, tears came to my eyes. Acupuncture does that to me, though. It alters my mental and emotional state. I wonder if it alters my physical state, too. I wonder if it accounts for the spectacular results of my blood lab work this morning. The nurse was pretty impressed: "Wow, that platelet level is something!"

loud and clear

2008-07-12T22:09:00.004-05:00

Last weekend, we went to a local garden store called Linder's and bought a few annuals and a dogwood shrub to plant in our back yard. The next day, we decided to go back and get another dogwood to plant next to the first one. At lunch, we debated whether to put Daniel down for his nap and have just Steve go, or to load us all up in the car and go. Daniel must have heard us because he loudly proclaimed this fine six-word sentence:

"I want to go to Linder's!"

I smiled. I love his clear little voice. And we all went to Linder's.

Daniel often refers to himself in the third person: "Daniel want to go outside." But lately, he's found his "I" voice:

"I don't like cobwebs."

"I don't like bees."

"I don't like beans."

He's also learning rules and repeats them randomly, as if he just thinks about them a lot:

"Don't run in the street."

"Don't touch the saw."

He is definitely a toddler now. And such a boy.

ben's first boo-boo

2008-07-10T20:40:00.003-05:00

Yep ... he got cut with the nail clippers, and now he's wearing a tiny bandage on his finger. He's perfectly fine, but he sure bled a lot at first (and gave us a scare!)

He's also developing his hand skills and is able to pick a few things up. (He can pull his paci out of his mouth, too.)

playmates

2008-07-07T19:50:00.005-05:00

Play group was at our house today, and the little girls had a good time playing on Daniel's new race car bed. Who knows when he'll will have four girls on his bed again? Especially four as cute as Annabel, Beela, Evelyn and Calla!

In early childhood education lingo, they tell us about the progression of children's play, and how young toddlers often play alongside each other (parallel play) but don't learn how to play with each other — actually engage each other in play (cooperative play) — until they get a little older. Daniel and Beela stood together at the easel, both drawing on the paper, which is typical parallel play, but then I heard Daniel tell Beela, "That's a line." Is that the beginnings of cooperative play? Maybe. And how about when Beela goes in to give Daniel a goodbye hug? (She tried to give him a kiss, but she couldn't pull the pacifier out of his mouth.) Whatever it is, it's pretty darn cute.

don't know much about history

2008-07-06T14:45:00.008-05:00

I have never liked the Fourth of July. I like fireworks, but I don't like pushing through crowds to get a good view of them. I don't feel particularly comfortable at pool parties. I didn't grow up in a family that barbecues or goes to "the lake." (We were in Oregon.) I see the Fourth as a holiday designed for extraverts, not me.

That's why the one and only thing I did this year to observe the holiday was the one thing that comes naturally to reserved introverts: I read the Declaration of Independence. And this time, I really read it and thought about it. I figured, it's probably one of those things I should do in my lifetime, so I might as well do it now. (It didn't hurt that it was a nice day on the patio!) My journalist mind kicked into gear as I tried to translate the 232-year-old text into simpler language (though Jefferson's own is beautiful enough), and when I got to the long laundry list of complaints about the king of England, I found myself wishing I'd paid more attention in my high school history classes. I wanted details.

"For cutting off our Trade with all parts of the world ..."
"For transporting us beyond Seas to be tried for pretended offences ..."
"He has constrained our fellow Citizens taken Captive on the high Seas to bear Arms against their Country, to become the executioners of their friends and Brethren, or to fall themselves by their Hands."

Wow. I knew the colonists didn't like King George, but I guess I had never grasped the extent of the things he had done to try to suppress the colonies. I would love to know the specifics of what really happened to spur all those complaints. It would make a good HBO or Showtime miniseries, I think — I envision something sexy and violent and quasi-historical along the lines of "The Tudors."

I also found myself wondering what the British side of the story was. The Declaration of Independence is written in a highly persuasive rhetorical fashion, but what if an equally persuasive Brit were to write a rebuttal? What would it say? (Oh, I'm sure it's been done, and I am just not aware of it.) Benjamin Franklin had lived in London for a while and was an admirer of English royalty, I think. Did he have trouble signing the declaration?

And then, as I perused the list of names of men who had signed the document, I saw a familiar one from New Hampshire: Josiah Bartlett. The same name as the fictional president on The West Wing, who also was from New Hampshire (but spelled his name with only one t). How did I not know that before?

hard tears

2008-07-05T20:20:00.006-05:00

These lazy days between chemo treatments lull me into almost forgetting I have serious, stage four cancer. Sure, there are the obvious reminders, like my cane, like the Hickman catheter that I have to flush and clean every two days, but that's 15 minutes, and then I'm not thinking about it anymore. The summer days drift by, and I'm busy enjoying my boys or sitting on the patio or reading a fascinating book and thinking about how much there is to learn and see in this world, this life. But then it hits me hard, like when Daniel and I are napping on the bed together and he hears a noise and stirs and reaches out and touches my arm and then goes back to sleep, and I see how much my presence comforts him, and I start crying. Or I'm lying in bed with Steve and suddenly the reality of my situation hits me so hard that I start sobbing on his shoulder and punching my fist against his back, almost like I'm having a tantrum, saying, "I don't want to die. I don't want to die. I don't want to go." There's nothing to do but cry, and pray, and then I usually get back to the business of living for each day. But those times haunt me. They haunt me today.

fence

2008-07-05T12:48:00.007-05:00

Privacy in the back and security at the gates make for a whole new feel in our back yard. Dakota Fence of Minnesota did the work, and they did a fantastic job with our little space. We are loving it.

Before ...

During ...

After ... (One thing we learned during this process is that the horizontal rails customarily face the yard of whomever owns the fence. The neighbor gets the nicer, finished side.)

Before ...

After ...

A side yard view with the gate open ...

Busy yard ...

"Stuck." That's what Daniel says when he encounters a gate he can't push open. (We decided to keep one side of chain link fence that adjoins our neighbor's very private and beautiful yard. To replace it would have meant trampling on her extensive and gorgeous landscaping — and besides, we didn't want to lose the view.)

The crew (plus Daniel and our nanny) pose next to the main front gate.

Next stop: The garden store! Now that we have a proper yard, we want to try to landscape the back section a little more.