3 Years Later

I saw someone at church this week who reminded me of something I've known for a while: I should probably tell all the awesome people who followed the blog and helped us that everything is going well for us. I recently passed my two-year anniversary of ending treatment. Last week I got a clean mammogram.

Kilian is now two-and-a-half, healthy and seemingly a normal, curious, talking two-year-old despite growing in my belly through surgery and half of my 6-month chemo regimen.

The biggest health scare we've had from him so far was a case of walking-pneumonia last spring and some extremely picky eating behaviors that made him suddenly drop off the charts for his weight, despite maintaining an average height.

But thanks to weight-gain Pediasure, bacon, fruit smoothies with ice cream and scrambled eggs cooked in olive oil, we recently celebrated him returning to a more normal 11 percentile weight.

(Below are two photos I took of the kids last spring in our garden out front).

The Tinkerbell Miracle

Pulling into the house last night, we found a curious object on our doorstep: a toddler-sized purple chair with lavender flowers on the seat.

This was no ordinary purple chair. It was a Tinkerbell chair - a twin to the most disputed of all seats in our household, matching down to the last detail, including the missing chair back (well - someone had constructed a replacement seat back out of cardboard and cloth for this one).

Now we had not one Tinkerbell chair but two.

Henry immediately tried it out: a perfect fit, like that plastic and metal seat was made for his behind. Naomi's face relaxed into a smile. She no longer would have to share her favorite chair.

Even better: There were no fights this morning over who got to sit in the Tinkerbell chair.

When we found this magical seat, there was no tag or note attached. Clearly it came right from Pixie Hollow itself. Thank you to the fairies who brought it here.


Note: (See previous blog entry for any questions about why I'm talking about a Tinkerbell chair).

Rad Girl

July 21

These crises are happening as soon as I awake: Kilian is wailing for a bottle. Naomi is hungry. She wants to know the schedule and if we can make masks again. And Henry has fallen into the toilet. Really. He slipped while trying out his new potty skills. He manages to pull himself out. But there is toilet water on his bottom and the seat. Good morning.

My body feels like it is 100 years old. Everything is stiff and achy. My skin burns from the radiation treatment over half my chest and into my armpit. And I’m sooo tired…. even while sleeping in till 8:15. I’m now at the point in radiation treatment where fatigue has set in.

Naomi asks me something about three times. I don’t remember what. I just know I didn’t use a happy mom voice to answer her. “Are you mad at me?” she asks.

“No. I’m just tired and my body hurts,” I answer. I take Henry to wash him off. Somehow magically Kilian stops crying. When I come out of the bathroom with a naked Henry, I see why. Naomi started feeding him the bottle.

“That’s the best thing that has happened to me this whole morning so far,” I tell her.

But the morning continues to nose dive. Henry is screaming because he wants me to carry his pop-up toy downstairs. I look at my arms. I’m holding the day’s worth of pull-ups, clothes, dishcloths and towels, a bottle and Kilian. I tell him he’ll need to carry it down. He lets me know how upset he is with this decision with his very loud, brain-shaking voice.

It doesn’t get better for Henry. I set out their bowls of cereal and declare no one will sit on the Tinkerbell chair this morning. I don’t want to listen to a fight over that. Steve picked up the Tinkerbell chair at Salvation Army. It is purple and missing the back part of the chair that you lean on. But for some reason it is the most coveted seat among children 5 and under in my house. The chair is the #1 cause of fights at breakfast and lunch. Who gets to sit on it? Who got to sit on it last time? Who knows?

But no one is ever satisfied with the answer. I want to throw the chair out.

When I make my pronouncement about the Tinkerbell chair, Henry decides he’ll sit on this giant bouncy ball. What a great solution Henry. Not.

The problem: I’ve had to save Henry from at least 5 life-threatening choking incidents thus far in his 2-and-a-half years. Sitting on a ball that you bounce on while eating doesn’t seem like a good idea for Henry’s track record of choking. This is another very unpopular decision with Henry.

More brain-shattering screaming. I throw the boy in time-out, repressing the urge to physically hurt him, and throw his ball outside. I’m thinking outside is a better place for the ball so I don’t have to deal with him trying to sit on it again. He sees how angry I was and that makes him scream even louder. He is really sad and mad. Henry can be very intense. But I am still too angry and tired to sit down and calmly coach him out of his funk.

When he calms down, I let him get out of time-out. He wanders outside. A few minutes later, he has brought the ball back in. I throw it back outside and another loud screaming fit ensues. Henry is back in time-out.

Kilian is fussing again. He’s been playing happily, batting and grabbing the toys dangling over him in the pack and play. He’s tired. I pick him up, swaddle him and for a moment get frustrated that he takes seven minutes to fall asleep while being jiggled instead of three minutes. That baby is a complete angel. Seriously, when my other children were infants, I would have kissed the ground if one of them had fallen asleep in seven minutes – just being swaddled.

I try to sneak in getting dressed before I get hit by another request or another fight breaks out. My dressing strategy is to have as little fabric touching my chest and armpit as possible. I gingerly pull a cotton tank top with a shelf bra over my shoulder. It feels like I’m rubbing steel wool across my skin. Still it is not so bad once it is on. I got lucky with this Target purchase.

When my skin really started bugging me about halfway through my 30 daily radiation treatments, I tried to find less irritating bras. But when I noticed that I was leaving a layer of skin in almost every garment I tried on, I just grabbed a few, went to the cash register and crossed my fingers.

I apply these hydrogel sheets to my burns. They supposedly provide a moist environment to aide my skin in recovering. They feel like someone bottled heaven and squirted it onto a slightly adhesive pad. I put two on today instead of one - for twice the heavenly feeling. I make a mental note to ask the nurses for more of these at radiation today.

I go downstairs. Naomi again wants to know what the schedule is for the day, if we can make masks. We made these masks at their Super Hero Birthday party and still have several. We decorated a couple more masks a few days ago. But it is now about one-half hour before I’m supposed to have them at someone’s house so I can go to my radiation appointment. I still need to pack a bag for them and get them dressed. I tell her after taking them to Jesse’s house, I’ll inflate the mini-pool in our backyard for them to play in. “That’s it?” she says. She is not impressed with this schedule. It is too short. “That is all we’re going to do?”

These kids are sadly in need of a schedule, discipline, less television and some personal attention. But I’m in no shape to provide it. I feel very unqualified to be a mom this morning. They need someone else right now.

At 11:15 I’m pulling out of my garage with the kids to take them to Jesse’s house. I’m supposed to be putting on my gown for radiation right now in another part of town.

Steve, the creator of nicknames, calls me rad girl sometimes … since I’m going through radiation. But I don’t feel so rad this morning.

So after radiation, I stop home to rest for a few minutes before picking the kids up. Then I write this blog entry. It somehow makes me laugh at whole morning.

Beam Me Up, Scotty

A torso profile, a tomahawk, a bullhorn, a photographic histogram, a larger torso profile - these are the shapes of my radiation. They are made by a ten-foot-tall machine called Trilogy. The radiation comes out of an appendage that looks like Trilogy’s head. She forms the shapes by shifting small lead plates in her face. Photons shoot out of every part of her face not covered by the lead plates.

While I’m getting treated, I’m looking right at Trilogy’s face, watching the invisible radiation hit my chest. Trilogy is just inches away. I should be thinking about the beams killing off any cancer cells that might have been left behind. The treatment is supposed to ruin cell DNA so they can’t replicate.

But I’m usually wondering if my skin is going to hold up until treatment is over. I have just 8 treatments left but my skin is raw and red like a fire hydrant from my breast to my armpit where the beams hit me.

A red warning light flashes on the wall in front of me while Trilogy delivers the radiation. The light means “Danger. Get lost.” And the lab workers do.

No one else is around. The technicians exit the concrete lined room and shut the five-inch thick vault door before they turn Trilogy on. They all wear radiation meters to make sure they’re avoiding exposure.

After a couple minutes, Trilogy rotates her head around and underneath me. As she passes over my head, she makes different shapes with her plates. I can’t tell if she’s showing off, stretching or what.

Jamie, a lab technician, walks in, shifts the board I’m laying on and exits the room, closing the vault door again.

“This is treatment,” she says through the speaker and camera system. Trilogy emits a low hum. The flashing wall light turns on again.

You’re not supposed to feel anything during radiation. But sometimes I can feel my body slightly warm and stiffen while I’m on the table.

I lay very still. My body is covered with orange positive and negative signs to help the technicians line it up so just the right parts get radiated. My arms are held in place over my head by a mold formed just for me.

The doctor told me the radiation would likely scar about 10 to 15 percent of my right lung and could make my rib cage more prone to fractures if I were in a car accident in the future. There is a very small chance it could cause another cancer in that region. But the treatment also significantly reduces my chances of a reccurence.

The whole thing reminds me of a scene from Star Trek II where Spock enters a room to fix an engine part that is spewing radiation. He later dies from the exposure but manages to save the ship and everyone on it. I’m not sure why I always think of this scene. I suppose it is because I’m in this room where no one wants to be. But I enter it in hopes of a better outcome.

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.