Done

I finished chemo on June 3. It was a date that couldn’t come soon enough. I really didn’t want to spend any more time in a room hooked up to Taxol and my one-time friend Steroids. Decadron was supposed to help my body accept the chemo called Taxol. I’m sure it did. But Decadron, you’re such a bi###. You seem all nice at first, giving me these wonderful break-from-the-norm energy bursts. But when that energy kick runs out, you’re just left with puffiness, swollen feet and ankles, weight gain and roid rage.

Note this important equation before taking up a friendship with Steroids:

Before steroids - 1 slice of bread = 110 calories
After steroids – 1 slice of bread = 1100 calories**

**(Actual calorie numbers may vary. This estimate based on fatigue and roid rage.)

Anyhow, as I was saying, June 3 couldn’t come fast enough in my mind. I almost felt like if I could just fast-forward time, I could somehow escape the dizziness, fatigue, joint pain, hair loss and loss of feeling in my feet from chemo.

But my fast forward button broke. So I just went through the 12 weekly treatments like every other mortal.

And now I am done. DONE. I felt pretty drained after that last chemo session. My body feels and looks like some poisons had a party in it for six months. I look in the mirror and wonder who that person is. My hair grew back during the break from chemo to deliver Kilian and is now mostly gone again. But chemo is over. It is time to kick those poisons out, clean up the crap they left behind and move forward. I’m not waiting for radiation to be over to start this process. I’m reclaiming my body now.

I joined Weight Watchers. And I’m making myself exercise with whatever energy I can muster. I went to a kickboxing class at the gym on Saturday. The girl in front of me wore a pink shirt. Since pink is the symbol color for breast cancer, I focused on her shirt during every kick and punch and imagined myself kicking cancer right in the nose. I’ve heard tales from runners about a euphoric feeling they experienced after running a certain distance. I never understood that feeling before. But after that kickboxing class, I did. I felt like there was this light exploding out of me and smashing into that pink shirt.

Die cancer. Be gone Taxol and Decadron. Take your side effects and leave. You all are no longer welcome here.

The baby formerly known as Flicker

Kilian was born on March 3 at a healthy 6 pounds and 10 ounces. He measured 20.5 inches in length. He seems like a miracle to me.

Not only did he miraculously fatten up to the size of a full-term baby despite being born five weeks early, but I feel that I ordered him to be born finally that night. That was the thought, at least, that I hurled through my head every couple minutes as I listened to his heart rate drop alarmingly low with each contraction. Slow and slower, it went till it seemed like his heart that typically beat 130 to 160 times a minute would only pump every second or two. I didn’t remember a heart rate that slow during the births of my other two children. I didn’t remember doctors pumping water back into my uterus to help cushion contractions for my other two children. I didn’t know if that should have been concerning or not, medically. But it was to me. And I just remember thinking, as his heart rate dropped more and more, ‘You must be born. You must be born now.’

And then he was.

Not that I knew it till the doctor informed me that he was crowning – my extremities were so pumped with the epidural that I was paralyzed for hours after he was born – because that is the way I like to roll at birth… on drugs and happy.

In fact, once Kilian decided to listen to me and just be born, the birth was remarkably easy. I might have tried to push once. But I was so relieved to hear he was coming that I laughed at the smallest, slightly humorous thing the doctors said and out Kilian came. In the end, the doctors joked that I giggled him out.

Kilian never visited the NICU and only spent one night in the warming, incubator-like baby bed before the nursery let him venture a stay to warm on my chest instead.

This method of warming preemies is called kangaroo care. It was developed by doctors in Columbia who did not have adequate resources to care for all premature babies born in their hospitals. Apparently a mother’s body will act like an incubator when a newborn is placed on it – warming as they need warmth and cooling as they get too hot. The warming allows the babies to rest faster, conserve energy for feeding and helps them regulate their breathing and heart rate.

This care has been my homework for the last couple of weeks, which will explain why I’ve answered almost no one’s emails. After getting the bigger kids to bed every night, I strap Kilian into this baby wrap and kick back. Not only does it put Kilian to sleep, but it nearly puts me in a sleep coma as well with barely enough energy to watch some tv. As a result, I’ve seen lots of parts of tv shows in the last few weeks but rarely whole episodes at a time.

(BTW I did enjoy reading everyone's comments on Facebook. Thank you for all your kind words and support. I will get to emails soon).

Kilian is a good little sleeper so far – too good, in fact. I think if we had let him, he might have slept himself to starvation. But between waking him up every two hours to eat and gulping down his aunt’s breastmilk (and her sister-in-law’s), Kilian got back up close to his birth weight last week.

I think the breast milk helped him a lot. Kilian seemed to digest it faster and wake up wanting to eat faster. On top of the very generous donations from family, we were very grateful to receive close to 300 ounces of the frozen liquid from the Mothers’ Milk Bank of Ohio. I feel like our freezer is full of liquid gold. Thank you to everyone who is helping with that.

It has been a happy couple of weeks. Up until a few days ago when I started chemo again, I considered myself on vacation from cancer. With Kilian born, I felt like my body finally recovered from that last dose of chemo back on January 24. Steve took some time off. We took the Naomi and Henry to just about every kid-oriented museum in the area to celebrate their new little brother.

I can’t wait to take the permanent vacation from this journey. Just another four or five months to go.

Conversations with the Sleep-Deprived

It’s 7am, and I can hear Henry talking with Steve. “I want Mommy.” I feel like I have not just shadows under my eyes but canyons. Tears start running down my cheeks. At 7am, I have logged in exactly one and a half hours of sleep for the night. I don’t know what prevents me from sleeping. My body is dying for slumber. Is it the toll of chemotherapy? Being 8 months pregnant? The breathing issues? The light-headedness? Or is it the restless leg syndrome and the joint pain?

I get up to go to the bathroom for probably the 15th time this night and think maybe I should just go sit near Henry on a couch somewhere… since I’m not sleeping anyway. His two-year-old voice is so cute. But then Henry will start asking me for juice or a sword or who knows what and I’ll have about zero energy to get it. I stagger toward the bathroom, grasping to the walls and counters for balance, the question pops in mind again. How can I be so exhausted and not fall asleep?

I feel like every cell in my body answers that question: The baby needs to come out. An image of this sliding chart dangles in my mind that shows me getting weaker as Kilian gets stronger. Then the familiar chain of thoughts race through my head. It’s like my body has put on this doctor jacket and is briefing me while pointing to the sliding chart with a wooden-pointer.

The baby needs to come out.
I’m not sure how much longer I can take this.
Delivering Kilian will take care of most of these problems.

I know, I say to myself. I try to lay down one more time and fall asleep till 9:30am. When I get up, the kids are already gone at Steve’s aunt’s house. I try to find anyone’s experience online of going through cancer treatment during their third trimester. Is this normal? I wonder. The only brief stories I can find are on the Hope for Two Web site – a web site devoted to pregnant women with cancer. The stories are short. One woman had her 13th child full-term, an 8-lb baby. But she didn’t start therapy as early on in her pregnancy as I did. Another woman says she delivered her baby 5 weeks early, and he spent 16 days in the NICU. She doesn’t say why.

Yesterday I picked Thursday morning with my OB-gyn to be induced. That date will make Kilian 35 weeks old when he is born. Will he stay in the NICU for two weeks too?

I hope he won’t. I feel bad that he won’t get to nurse. The chemo will stay in my system for months after I finish so it’s out of the question. I’ve never really liked breast-feeding. But the babies seem so content when they’re eating, like they still need that attachment they got for the previous nine-months, that I do anyway.

I don’t like the idea of Kilian in the NICU. I keep thinking, he doesn’t get to nurse and now he gets to spend the first two weeks of his life in a glass box?

But then Dr. Body points back at the sliding chart – the one where I get weaker as Kilian gets stronger. Kilian is looking pretty strong on his curb chart. Then he starts to thump around in my stomach, making it visibly move. Last week, the ultrasound technician at Hopkins pegged him at 5lbs and 14 oz already. If he continued to grow that fast this last week, he’ll be well past 6 pounds by Thursday – even while being born 5 weeks early.

My mind clothed in the doctor jacket is back again. It points one more time to the chart and puts down the wooden-stick, like it’s finishing this long lecture. I think Kilian is strong enough, it says.

I hope so, I add. I need to stop talking to myself. People will think I'm crazy.

Chemo Round 4

Hair status: Gone. I’m not big about having a bald photo of me floating around. But, maybe it’s the journalist in me, I feel like I should put it up to tell the story better.

Nails: I’m going with Halloween couture as their new color name. There are now close to three pinky-purple stripes stretching across some of them. Naomi, the other day, asked me why I painted them white. For style, sweet little girl, I said. Actually that’s not what I said. But my original answer was so much more boring.

Friday Feb. 11, 2011: It’s been 3 weeks since my last chemo treatment. Normally I would have gone in for another dose on Friday. I’m so glad for the break until the baby is born. Instead of a pre-chemo date night with the kids at the grandparents, we’re all sleeping in one bed. Or I should say everyone else sleeps. I feel like nights are my personal torture time. I keep staying up late, thinking that will help me sleep (and old habits die hard). It doesn’t. I wake at 1am, 2am, 3am, 4am, 5am, 6am, 7am. I wake at 8:30am, finally getting more than 45 minutes of sleep at a time. Every morning Steve tries to let me sleep till the last possible moment before he has to go to work. Thank goodness he can do some of that work from home.

Normally, I get to skip this part of pregnancy till the last month – the part where I wake every hour because my hips and leg joints hurt so bad that it wakes me until I struggle to turn my huge belly to my other side. The chemo made it start early this time. It’s been going on for weeks already but I’m so tired I can’t really remember how long.

I stagger downstairs as Naomi is getting ready to go to preschool. Her grandpa is taking her. Then he’ll come back and get Henry until Naomi comes home.

After they leave, I sit with Henry on the couch and tears just start dripping down my cheeks. I’m so frustrated. I thought I would be feeling better from that last dose by now. I’m so tired. I feel like I’m missing Naomi’s last year with me before school. I wanted to have more one-on-one time with Henry before the baby came. When is this going to end? I shout in my head. There have been some beautiful things I’ve seen and received during this illness that make me so grateful. But today, right now, I hate cancer.

Henry looks at me and says, “Mama, you sad?”

“Yes.”

“Why?” he asks.

“I’m tired of being tired.”

“You do stamps with me. That make you happy,” Henry says with his uncanny ability to speak at two-and-a-half. We go to pull out his dinosaur stamp set. I can’t believe he remembers. That is what we did last time I had one of these melt-downs. I kept telling him then how happy it made me to play with him. It makes me smile.

Henry leaves soon afterward with Pops, and I take a short nap. Later on, Michele comes to help me clean. I get up to help put things away. Someone recently told me cleaning with young kids is like shoveling snow during a snowstorm. So true. But it’s nice to see things somewhat back in their place, at least for a few minutes. In an hour, the house is looking much better. Wow, I’m thinking, I am feeling better. Then about another hour later I realize I’m wiped out again.

That night it’s the same waking routine. I get up around 9 am Saturday morning. Tiffany and Wendy are coming to help me paint Henry’s new big boy room. Actually, they paint the entire thing while I scoot a step-stool around to sit on and help paint some green stripes. I thought I’d be able to help more. But my breathing issues kicked in that morning. I can only stand for a couple minutes before I get out of breath and start to feel light-headed, though I do a little better in the afternoon.

On Sunday, by some miracle, I sleep for a couple hours in the morning. We miss church. But it helps so much. The kids help us pull down the tape in Henry’s room. They hit the baseboard tape. I push the step-stool around again and pull off the stripes. Steve hits the ceiling tape. The room looks beautiful.

On Monday, I see the OB-Gyn. I see her write in her notes that the patient feels fine except for fatigue. Fine is a little bit of an overstatement, I think. But I don’t bother to correct her. Maybe I shouldn’t have smiled so much while talking to her. Whatever, I don’t care. She’s not going to tell me anything different if I had said something, I figure. As long as my lips and nails aren’t turning blue from my shortness of breath, I’m considered to be tolerating the chemo well. Go me.

I think about the people that don’t “tolerate” it well and wonder what that must mean. I feel grateful.

More importantly, this conversation helps me see the light at the end of the tunnel. I’ll get some steroid shots next week to help Kilean’s/Kilian’s (haven’t decided on a spelling yet) lungs develop faster. Then I’ll meet with her on Feb. 28, to pick a date to be induced. Right now, if it’s up to me, that date will be the next day, March 1, about 5 weeks early. Sorry Kilean. I’m holding out as long as I can. I’m hoping this treatment will be easier on me when I’m not pregnant any more.

Random Updates #2

Hair remaining: About 3 pct. Those patches in the back of my head are pretty small to non-existent now.

Number of Doctor Appointments to Date: At least 67, including many all-day appointments. This number would be compared to my normal doctor visit rate of about 1 time per year.

Treatment Remaining: 3 more months of chemo, 4-6 weeks of radiation. Then, most likely, 5 years of a hormone therapy drug, which is supposed to have a lot less side effects than all the other treatments and is supposed to be the most effective weapon against my particular cancer type.

General blabbing:
I think I'm finally starting to feel better and get some energy back after that last round of chemo. Happy face. (Although don't quote me on this statement when 5:00 pm gets closer). During the last couple weeks, we finally got a good mug shot of Flicker. The ultrasound technician had to get a weird angle because his feet were in his face. To make the feat more difficult, his feet had locked the umbilical cord in front of his face too. But the technician finally got a good one of what appears to be a winking baby.

During the ultrasound on Jan. 24, the technician estimated him to weigh 3.3 pounds, which put him at the 46 percentile for growth even with the chemo. Hopefully the Jarboe trend of bigger size babies will help him out with what is shaping up to be an early exit. I like to say that if Henry was 8 lbs 12 oz at 40 weeks, maybe Bobblehead #3 will be just a little lighter than some people's full-term babies.

Due dates?? We're looking at having the baby anywhere from 4 to 6 weeks early so I can get back on my chemo program sooner. Without the baby, chemo would have resumed last Friday. The longer you wait, the more you risk that the chemo won't be as effective. Then again, we know from a genetic study of my cancer that chemo is not the most effective tool at fighting my brand of cancer. But it is THE tool available at this stage of my treatment. This next round of chemo will introduce a drug we were somewhat hesitant to take while pregnant since there was so little data on how it impacted the human babies, and the animal studies didn't look promising. The good news is that I just found this study that said pregnant women, when treated early, didn't seem to fare any worse when it came to cancer recurrence rates 5-years later than non-pregnant women.

So, to the baby likely to be named Kilean, which can mean brave little warrior in Irish, get ready for your early exit sometime during the last week of February or first week of March. You'll soon have a chance to earn your name some more.

PS1 - The lovely new family photo was taken by my friend Jeri the day before my surgery.
PS2 - Here are the lyrics to a song that my brother Eric wrote me for Christmas. I really liked it. My favorite part are the first two lines.

"Bobblehead"

Flicker on a screen,
you saved me.
A mother and her child
Caught candidly.
With that belly full of love
God intervened.
So call it fate,
But i say I'm free.

If they say that it's different for everyone
Then I claim this one as mine.
Dare try cancer to take my bobblehead from me.
Dare you to give me all the fines you would please.

Flicker on a screen,
You saved me.

Random Updates

Here is my Bridget Jones style cancer update:

Hair remaining: 10 percent – with 99 pct of the remaining hair all residing in two dwindling patches on the back of my head. Highlights of the bald life: You get more minutes to enjoy a warm shower when there is no hair to shampoo or shave. Add a few more minutes under the hot spigot since you don’t have to use the hairdryer either. Awwww.

Eyelash/Eyebrow status: Still there though the eyelashes are getting pretty thin. Hoping to hold on to the eyebrows.

Other weird chemo side effects: My nails have started changing colors – from fleshy pink to a nearly white color with a purplish stripe through them. My thumbs look like they are about to grow a second purple stripe. I can’t decide what color to call them. Cancer White, Poison, Halloween Couture. Maybe on top of the eyeliner I have re-introduced myself to, I will start painting my nails on a regular basis for the first time in my life.

Baby: Growing fine and hitting the 50th percentile, according to the last ultrasound in early January. My high risk specialty group assures me they could induce a birth six weeks early with no long term problems, if needed for me to continue the next wave of more baby toxic cancer treatments that we postponed.

Arm Update: I regained nearly full motion in my arm around mid-December, a little more than two months after the surgery. This flexibility is very important for mother tasks like: picking up dropped blankets in the back seat of the car, catching kids running from timeout (Henry), and serving snacks to the nether regions of the car (minivans are great for space but require much more stretching for snack passing). Supposedly I’m not supposed to lift anything over 15 pounds for the rest of my life with that arm. Hmmm. We’ll see.

Blood Counts: I’ve been doing pretty well with white blood cell counts. They’ve actually gone up some, despite not getting the shot that is supposed to boast your immune system. On the other hand, my red blood cell percentages have been dropping, which might explain why I get out of breath eating a bowl of soup sometimes or sometimes feel light-headed when standing up for too long. Chemo is so awesome. My doctors like to say it is the pregnancy. I do get out of breath when pregnant – but never this much. Seriously.

Blog entries I should have made more timely:

January 20, 2011
The good news: I’m feeling much better today and my energy lasted most of the day. I’m not about to take my kids to the zoo alone or any sprawling, unenclosed space where kids who didn’t want to listen could keep running and running and running (Henry). But I put them in the car and drove them three blocks to the enclosed community center for tot time where they can run but only so far while I could sit. Thank you Tot Time. Community Center - Oh please, please buy some more gymnastic-padded climbing obstacles with that HOA money for new toys.

The bad news: It took me nearly the full three-week chemo schedule to get to this energy point level after my last dose (the third dose). This recovery time does not bode well for round 4 tomorrow. Chemo's side effects tend to accumulate with each dose, I've heard. But at least after tomorrow’s chemo dose, I’ll be half-way done with poison-based medicines - I mean chemo.

I was looking at my beautiful photo album (of our pictures the day before the surgery that some people gave me) and remembering all the things I used to do with my kids. (Thank you to everyone who gave me that. Reading all the kind notes brought tears to my eyes. It was so much more beautiful than what I would have put together myself – whenever that would have happened. There was a video of our family in the book too). I really enjoy the interviews on the video where Naomi lists all the things she does with me and to help me. She has probably used a tree’s worth of paper since the diagnosis for making me pictures and cards. Henry says on the tape that he likes “playing with Mama.” So after looking at the album and watching the tape, I really tried to push myself to do some of the old routines. We went to the Jump Zone Wednesday night with Steve. Burn that energy, Bobbleheads. Burn it.

I did some Big Girl School with Naomi earlier in the week where we sit down and work on writing letters, sounding out a few words, coloring and playing some word games.

I realized Henry knew none of his alphabet letters and sounds compared to Naomi at his age. So I tried to get him to sit down to talk about a workbook page.

Interest level: Zero.

I was about to give up but kept remembering a conversation with my friend Megan. We talked once about some educator who had explained to her how boys learn differently from girls – that their minds tend to get more engaged when active. I kept thinking about that and got an idea. I was really proud of myself. Henry is obsessed with pirates lately. So I taped up the letters of his name – one each on a piece of paper. Then I had him attack the letters with his sword as part of a pirate mission. This exercise still only lasted about five minutes. We did it the next day with about the same success. I was thinking it was a quasi-failure. But when I asked him to name the letters he learned a few days later, he said, as if pointing to signs hanging in the air, “H-E-N-R-Y – that spells me,” pointing to himself.

Of course most of these few good hours in the day were followed by lower energy where I didn’t engage the kids as much. When that happens, my kids tend to play okay for a short time. But eventually, they turn on each other, like wild animals vying over a half-eaten corn dog covered in ants. Naomi hyperventilates about Henry not following a rule, using her toys or starts teasing him slyly. Henry starts screaming at the slightest provocation at a pitch that kills brain cells.

Ay yey, yey. Maybe next week we’ll work on conflict resolution skills instead of alphabet letters.

Belated Christmas Thoughts

The following excerpt is from an short address I was asked to give at a women's meeting for my church in early December on the theme of peace & joy. I know people who read this blog have different faiths and beliefs. So I hesitated in posting this message. But in the end, obviously, I'm posting it. I considered much of it my way of saying "thank-you" through the lens of my faith.

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When I was asked to speak about peace and joy tonight, my first reaction was, “Peace and joy??? This is not the season of peace and joy for me. It is the season of dread, especially as I wait for my hair to start falling out.” About two nights ago, it really sank in… that I would lose my hair and lose it soon due to my cancer treatment. For some that know me, that might sound odd. I’ve joked about it for months. I bought a wig, had the wig cut. I cut my hair short to make its departure less disturbing. I borrowed clippers to have on hand to shave my head when it all starts falling out. But that’s just the way I am. Change is not real until it’s actually about to happen or happening.

But in other ways, this period of my life makes it easy to talk about tonight’s topic. In the midst of my health problems, I also have felt great peace and joy.

There is a scripture in my church that says when you are helping your fellow beings, you are serving your God. In our struggles, I have often thought about when the baby Jesus was born. People were so excited for this birth. Scriptures prophesied of it for years. Angels heralded it. Shepherds travelled from their fields to see him. Wise men searched the sky for signs of the event. Then when the sign was sited, the wise men travelled from even farther, bringing the baby valuable gifts of gold, frankincense and myrrh. I’m sure there were other gifts too – ones that didn’t make it into the account in the scriptures.

In the fictional Drummer Boy song, the boy runs with others to honor the newborn King, the baby Jesus. Everyone in the crowd is bringing their finest presents for the baby. The boy then feels embarrassed at what he can offer. He sings, “Little baby I am a poor boy too. I have no gift to bring that’s fit to give the King.”

He decides though to give the baby the best he can and plays a song for him.

When I tell my children the nativity story, I remind them that we can no longer bring physical presents to the baby Jesus to celebrate his birthday at this time of year. But we can give him other gifts: we can help others. We can try to be more like him.

I obviously am not the baby Jesus. I’m not tiny and helpless. I am a girl, not a boy. But in my health struggles, I have been touched by the many gifts and service people have offered us. Sometimes in seeing people help us, I’ve felt like I’ve had this ringside seat at the manger, watching people offer the best they can think of… from my neighbors pitching in to buy us a freezer to hold the frozen meals they would purchase for us, from someone recognizing my rocking chair was broken and offering to fix it, from my sister-in-law and her friend pumping milk nightly and freezing it so my child could have some breastmilk (later on her lactation consultant got a company to gift these two women electric breast pumps and bags to make their service easier), to my photo book, to the kind notes people have written, to people watching my kids so I could rest, bringing us meals, offering to run errands and countless other acts.

For us, there has been great peace and joy this season.

I also like this season because it reminds me again of Jesus’ wonderful role. In John 14:6, Jesus said to his apostles: “I am the way, the truth, and the life: no man cometh unto the Father, but by me.” When I’ve pondered this phrase lately, I’ve thought less upon the milestones that we need to achieve in this life, but tend to hear in it more and more that it refers to the person we need to become. With some caveats, for me it seems the way to return to the Father is not a set path but whatever path we need to become like Jesus.

Jesus showed us the way we need to treat others. He didn’t judge their worth on one action. He saw their entire worth. He spent time with the lowly. Not only did he preach to the people, but he helped them. The New Testamant is full of healing stories. In the cancer world, I’ve heard the statistic that 1 out of every 2 men will have some kind of cancer at some point in their life. For women, there is a 1 in 3 statistic. In a time with no modern medicine, I imagine these actions by Jesus were a precious gift.

And there are many instances where he helped people before he bothered to say one word about preaching to them or even at all. To the lady caught in adultery, he saved her life before he simply told her to go and sin no more. To the people who followed him so far into a desert land that it was difficult to find food, he turned 2 fish and 5 loaves of bread into a meal to feed 5,000.

For me thinking about Jesus brings me almost a magical feeling of hope - that someone did complete his mission on the Earth perfectly, even though no one else would. And even though he completed his mission without flaw, he would be happy with the best gifts I could offer, like he would have been with the drummer boy’s gift - if that story had been a true story.

In some ways we all are like the drummer boy. None of us can give every gift there is to give. Maybe our gifts are not even what others consider the finest. But from our talents and abilities and the people we know that only we can touch in certain ways, we can give our own unique and beautiful gift to Jesus – the best we have to give. And I imagine it would make him smile, just like the song, which finishes like thus as the drummer boy starts to play:

Mary nodded, pa rum pum pum pum

The ox and lamb kept time, pa rum pum pum pum

I played my drum for Him, pa rum pum pum pum

I played my best for Him, pa rum pum pum pum,

rum pum pum pum, rum pum pum pum,

THEN HE SMILED AT ME, pa rum pum pum pum

ME AND MY DRUM.