Let Them Help.

28 02 2011

Speaking of queens and thrones...Photo by Amy Rauch Neilson. (Do I really want to take credit for this one?)

The Queen once said: Let Them Eat Cake.

I am far from a queen (though my husband does throw the word “diva” around quite a bit), but I do have three words of advice for those times when you find yourself navigating one of life’s rough patches:

Let Them Help.

Anyone who knows me is probably shocked by my audacity right about now. Me, giving such advice. Me, the one who won’t let anyone help.

Change “won’t” to “wouldn’t”.

A leopard can indeed change its spots – and so can I.

And I have.

I’m not saying it was easy.

But once I saw the wisdom, I thought to myself, “Why didn’t I do this sooner?”

The Human Race often gets a bad rap. People lament that no one cares, it’s a dog-eat-dog world, everyone’s in it for themselves.

While there are certainly those out there who fit that description, by in large, I think it’s quite the opposite.

People are basically good. Very good, in fact. They want to help.

So let them.

I know. If I’m going to talk the talk, I’ve got to be willing to walk the walk.

So I am.

I’ve only just begun and already, it’s an amazing journey.

Since my Jan. 12 Stage 4 breast cancer diagnosis, I’ve been Letting People Help…

• Drive me to chemo.
• Bring meals.
• Pick my son up from school.
• Fold laundry, vacuum, change the sheets, run errands.
• Grocery shop.
• Lend an ear at 4 a.m. when I can’t sleep and I’m scared out of my mind.
• Clean the toilet.

Yes, you read the last item on the list correctly. When a close friend asked me if there was anything else I needed, I paused, let out a big sigh and said, “Would you mind scrubbing the toilet?”

Now that was a hard thing to ask.

But it needed to be done. And I was too nauseous from chemo to manage the task myself.

She grabbed the toilet brush – very enthusiastically, I might add – and disappeared into the bathroom. Her spirits were lifted by her ability to help and my willingness to let her. And so were mine.

Every single one of us has gifts to share. And perhaps more importantly, gifts they want to share.

So, let them.

Be as gracious a receiver as you are a giver. Let the people who love you form the bridge from one side of the gorge to the other.

Let Them Help.

You’ll get your chance to pay it back, pay it forward – or maybe even, if you’re lucky, both.

Copyright 2011, Amy Rauch Neilson

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Status Update: Hair to Stay!

27 02 2011

Yes, I know. It’s nearly a week past The Date. The Date by which, according to my oncologists, my hair would have fallen out, if it was going to. So, I should be in the clear.

Still, the more days I can put between That Date and Now, the more at ease I feel.

This morning, i washed my hair and combed it out in the shower — with my eyes shut. I took a deep breath, then dared open one eye and look down at the drain.

Nothing. Not a single strand of hair.

Nearly a week past The Date. I think I’m good this time around.

Whew. Praise God for all victories, big and small.

Copyright 2011, Amy Rauch Neilson





Let’s Find Another, Better Way. And Soon.

25 02 2011

Launching a rocket at Ford Heritage Park, September 2010, with our friends, Darrin and Carson O'Connell. May there be many more rocket launches in our future! Photo by Amy Rauch Neilson.

I felt pretty horrible physically yesterday. And several hours of that eventually wears you down mentally, too.

I told you. I’m not perfect. So far from.

Thursday and Friday of this week were Theo’s Winter Break from school. I’ve always loved his days off, because we fill them with the most wonderful adventures, whether it’s an official outing to the Ann Arbor Hands-On Museum, the Detroit Science Center, the Detroit Zoo (we never get past the Amphibian House), or, when the weather is nice, we’ll take a trip to the Nature Center at our local Metro Park, ride our bikes, play in sandbox, hunt for bugs, frogs and toads, race each other all over his favorite playscape at Ypsilanti’s Ford Heritage Park. (I’m so not one of those parents who sits on the park bench, watching from afar.)

But yesterday, I was too sick to do any of that. I missed out on some of his life the first go-round, Stage 1 in 2006, when Theo was just six months old. I try never to dwell on what I missed out on back then — being in surgery or sick from chemotherapy instead of with him, or restricted to lifting no more than five pounds for weeks at a time, which translated into not being able to lift my own baby.

I’ve long since moved on, accepted what was, truly grateful to be alive for the here and now. What made it easier to do that was knowing that that part of my life was done and over with; I was “cured.” Don’t look back — look forward, I’d tell myself. Look toward the future at all that is yet to be: Theo’s first day of school, DisneyWorld, family days, reading a book together before bed.

So, yesterday was a disappointment because I felt crummy from Tuesday’s chemotherapy treatments and instead of being able to plan wonderful Mommy-Theo Days (that’s what we call them at our house) for Theo’s Winter Break, I was achey and nauseous, too tired to be able to do what I truly wanted to do — spend the day with my kid.

Last evening, we were all sitting on the couch together when the waterworks began.

“I hate this,” I told Don. “I hate feeling this way. I hate having to go through chemo again.”

What I detest most about this second time around is that I’m not sure where the finish line is. Neither are my doctors.

How much chemo and for how long? No one can be sure.

On Monday, I met with a member of my oncologist’s team, Cynthia Kresge. She had quite a bit of good news, for which I am most grateful. She listened to my lungs and they sound clear. I was coughing a lot when I was first diagnosed, and no one was sure whether it was from the spots of cancer in my lungs — the biggest of which is the size of a blueberry in my right lung — or from the irritation of the lung biopsy itself. Whatever it was, it’s gone now. Praise the Lord for that.

Also, the lump in my left breast — the one that ridiculously formed between my implant and fake (reconstructed) nipple — seems to be shrinking. This is super-duper news.

Though we won’t have a “picture” of the battle’s progress for a few weeks yet (I’ll likely be scanned after I complete Round 3 of chemo), we do have some physical evidence that these treatments are already hard at work. Yay, God!

What’s difficult for me is that Cindy told me chemo may indeed be my lifestyle — long term. Like a forever thing, until breast cancer treatment advances to the point where there’s something better. That’s because, as a Stage 4 breast cancer, I will never be “cured,” at least, not in the current realm of scientific possibility. So, even when the body scans come back “clean,” there will be cancer cells lurking in my body. We will need to keep them at bay. Chemo is the way.

The thought of feeling like I have the flu for two or three days, two weeks on, one week off, indefinitely, well, yes, that was enough to make me cry last night. Sob, if you must know.

Even so, I am still grateful. Because given the alternative, I’ll do what I have to do. If two weeks on, one week off, indefinitely, is the path I must travel, I will do it. I will do it because I want to be here for my husband and my son. I will do it because I love life and want to stay on this planet for as long as possible. I will cherish all of the good days when I’m feeling well, and deal with the bad days as they come.

I’m just praying hard that another way to manage this disease, a better way, shows up. And very soon.

Copyright 2011, Amy Rauch Neilson





This Just In…I’m Front Page News in the Windy City!

25 02 2011

Wednesday, I was interviewed by Jackie Tithof Steere from ChicagoNow, owned by The Chicago Tribune Media Group. The article appeared yesterday — front page news! Check it out! The link, and note from Jackie, are below. A special thanks to Jackie, who has been tweeting and retweeting my message all over tarnation! You go, girlfriend!

Amy

P.S. Oprah: Call me! We have a lot to talk about!

Hi Amy,

Here is a link to the story on ChicagoNow. If you are able to look within the next hour, it is on the front page of ChicagoNow (www.ChicagoNow.com) under Recent Posts.

With all of your terrific answers, I thought it would read best like a Q&A.

Hope something wonderful comes of it. Let me know if you have any questions.

Thanks very much and take care. I’ll be keeping up with things on your blog. 🙂

Jackie
chicagonow.com/sonotanexpert

For those of you who’d rather copy and paste the link, here it is:
http://www.chicagonow.com/blogs/so-not-an-expert/2011/02/writer-fights-breast-cancer-needs-your-help.html





A Bunny Named MarTEN

24 02 2011

Theo's much loved, stuffed bunny, MarTEN.


I get these questions a lot: How much does Theo know? What do you tell him?

I share with him whatever I think is age-appropriate. Theo is a very bright, inquisitive five-year-old little boy. But he’s still a five-year-old little boy.

The first time I was diagnosed with breast cancer, Stage 1, March 3, 2006, Theo was six months old. That he was an infant was to our advantage, at least in the “what to tell him” part of the equation. I knew he wouldn’t remember all that our family went through in the months of my treatment – including my hair loss from the Adriamycin/Cytoxan chemo cocktail I was on.

In fact, it was a little bit humorous that both Theo and I were bald at the same time – his hair grew in very slowly from birth – and our hair seemed to grow in tandem until somewhere around Thanksgiving 2006, we both had a short ‘do!

This time around, my first thoughts after diagnosis were of Theo and what and how we would tell him. I knew there was an age-appropriate way to do it; I just wasn’t sure what it was. So, I called a close friend, Helene Rabinowitz, who had spent more than 30 years as a practicing psychologist, and bounced it off of her.

“Tell him in little bits and dribbles, as best you can,” she said.

“But how will I know when it’s enough, or too much?”

“Trust me,” she said. “You’ll know.”

And she was right. The first time I broached the subject with Theo, we were sitting on the couch together in the family room.

Theo had been asking me why I had to go to the doctor’s all of the time, and why Daddy had to go with me, too.

“Honey, Mommy is sick, and so the doctors have to give her medicine.” I went on to explain as best I could that I was going to get better, but it was going to take a little bit of time.

He listened for a while, then abruptly, he jumped down off the couch and went and picked up his favorite monster truck. He started racing it on the kitchen floor, accompanied by very loud “zooooooooooommmmmmmmm” ing sound effects. Helene had been right. I knew when he’d had enough.

Last week, we made much more progress – and some very amazing progress at that.
Theo has bunk beds in his room. He sleeps on the bottom bunk and I am the one who puts him to bed about 90 percent of the time, even in this period of chemo. I’m determined to do as much of our “normal” life as I possibly can throughout my treatment.

A few nights ago, we were laying together on his bottom bunk. There’s a little light that hangs down from the bottom of the top bunk, and all the lights were off except that one. I got out a book to read to him, as I do every night.

I always wear a tank-top to bed. I’ve always run very warm – my whole life. So, even on the coldest winter nights, I wear a tank top and pj bottoms. This is significant because it’s one of the few times Theo can actually see my chemo port. He doesn’t like it. He doesn’t like the incision next to it, where they went in to place it. He doesn’t like the port itself, which is under my skin but is a decent-sized lump – like the size of a silver dollar, raised.

He asked me what my port was for. I put down the book we had been reading and said, “Honey, that’s what the doctors use to give me medicine.”

He thought about that for a moment. Then he said, “Is what you have an allergy?”

“No, honey, it’s not an allergy.”

More thought and contemplation.

“Is it a germ?”

“No, honey, it’s not a germ.”

“Then, what is it?”

I started really calling upon my brain power to figure out how I could best explain this to him. Finally, I said, “Do you know what a cell is?”

“No,” he said.

“Well, our bodies are made up of all these teenie pieces called cells. They’re so small we can’t see them without a microscope. Our cells do good things for our bodies – they help us to grow bigger and stronger, and they repair our skin when we’ve got a boo-boo.

“But sometimes, cells can be bad. Mommy has some of these cells in her body right now. These cells are the ‘bad guys’ – like the bad guys vs. the good guys in some of the games you play. The bad guys try to take over, so the doctors give me medicine that makes the bad guys go away.

“Does that make sense?”

He nodded.

Then he said, “Mommy? Will I get what you have?”

“No, honey. What Mommy has isn’t something you can get. (This is true from the perspective of the BRCA 1 gene. He can be a carrier, but he won’t “get” genetic breast cancer.)

“Does that help?”

He nodded again.

“Mommy? Will you always have to have a port?”

“No, honey. When the doctors are done giving me medicine, they’ll take my port out.”

I thought the conversation was over and started to go back to reading the book.

That’s when Theo began talking to his stuffed bunny, whose name is MarTEN – not Martin. Theo insists the bunny’s name is MarTEN.

He told me that MarTEN was sick and had a port. He showed me where the port was on Marten’s body. Then he told me that since Marten’s legs aren’t working, the doctors were giving him medicine to make him all better. As soon as Marten’s legs start working again, the doctors will take his port out.

It was quite profound – the way this kid was able to understand and transfer this information I’d given him from me to his pet stuffed bunny.

Wow. Five years old.

Copyright 2011, Amy Rauch Neilson





Status Update: Blech!

23 02 2011

Tuesday was my first day of chemo, Round Two. A “Round of Chemo” for me is defined as two weeks on, one week off.

Tuesdays are the tougher of the two days of the week when I receive infusions, since I receive three drugs on Tuesdays and just one on Friday — the PARP, the one with fewer side-effects. Wednesdays and Thursdays are my worst days, with Wednesdays in the lead by a long shot.

The last two Wednesdays following the Tuesday chemo were tolerable. Today, not so much. I’d describe it as Blech!

Nausea, near vomiting, but not any, as I immediately took the anti-nausea drugs when that feeling washed over me, and stayed on them all day. Unable to eat much of anything — an English muffin, a yogurt, a piece of toast for dinner. Achey, tired, light-headed, cold sweats, my head hurts. Blech!

Tomorrow will be a better day.

Copyright 2011, Amy Rauch Neilson





Guest Post: Amy’s Power Walk

23 02 2011

Artwork courtesy of http://www.cafepress.com

How does one begin a chemo afternoon with Amy?

It all started with the power-walk in the parking structure. Before I had my keys in my bag and my purse slung over my shoulder, a blonde blur shot past me, walking and breathing, walking and breathing, swinging her arms. I wasn’t sure if we were late, or what, but we were hauling!

“Need to get a little exercise today,” she called over her shoulder, as she all but left me in her dust in the Beaumont Hospital South Deck Skywalk. “Gotta get some of my numbers up.” So away we went.

I think it’s fair to say that, as a first-time Chemo Buddy for Amy, I had no idea where I was headed. Does anyone ever really know where they’re headed when they’re with Amy? After trailing behind Power Walker Woman through doors and around corners, jogging in place on elevators, sneaking through secret short-cuts and creeping up and down miles of hallway, I felt just like a hamster in a habitrail. But the best was yet to come.

That’s when Amy came upon a table, dropped her 37-ton purse, glanced back at me and said, “Watch my stuff,” then completely disappeared. I saw her briefly as she bounced down the first flight of stairs, arms in motion, jogging down two floors to the reception area beneath us. I could hear her footsteps tap-tat-tapping on the stairs until they faded away to nothing. A moment passed, and, just as I was wondering where she’d gone, I heard them again: tap-TAP-TAP!

I peered over the banister and there was the blonde blur, bouncing back up the steps. “Ready,” she said, a little out of breath. “You got my stuff?”

I grabbed her purse and looked up to answer, but she didn’t hear me. She was already way ahead of me… again.

For Part I of this post, see “Begging For Chemo,” Feb. 22, 2011.

Copyright 2011, Jennifer Amprim Wolf








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