Living with the Lump…But Only for Now

8 04 2011

This "Hop to a Cure Frog," a gift from my niece Danielle, reminds me that every day, were that much closer to finding a cure. Photo by Amy Rauch Neilson.

Last time is so different from this time.

The first time I was diagnosed with breast cancer was in March 2006. I was a Stage 1; the lump was the size of a blueberry and extensive testing, including a Sentinel Node biopsy, showed that, thank God, the lump was contained to my left breast.

I had a protocol of treatment that felt intuitive. It was through a lumpectomy on March 3, 2006 and the subsequent biopsy results that the margins around my tumor were declared “clear.”

Still, because I am BRCA 1 positive and the likelihood of a new primary was statistically quite high, I opted for a double mastectomy on April 14, 2006. Then, as “insurance” against the possibility that there was a rogue cell or two lying in wait someplace in my body, I opted for the recommended four doses of chemotherapy.

I began my protocol of Adriamycin and Cytoxan on May 31, 2006. I was done by July 28, 2006. I knew I would be. My schedule was pre-set – every third Tuesday, four chemotherapy treatments total. I could count the days, cross them off on the calendar, feel myself getting closer and closer to the end of treatment and the beginning of my new, cancer-free life. But best of all, I knew that the cancer was gone from my body and that all of the additional treatments I was undergoing were “just to make sure.”

This time around is so counter-intuitive. I’m not saying that the treatment approach I’m doing is anything but what it should be. It definitely IS as it should be and I am grateful to have it. The protocol just feels odd and takes some getting used to.

Because I was diagnosed as a Stage 4 this past January, with metastasis in my breast lymph nodes and both my lungs, chemotherapy comes first, surgery later. I understand the logic. First we treat and get rid of the metastatic breast cancer in my nodes and lungs, because that’s where the true danger lies — in its ability to continue to grow or even spread. Then we go for the lump in my breast.

This approach, I’ve learned, is called neoadjuvant chemotherapy – chemotherapy that is given before surgery to help shrink the tumor(s) before removal. Once we’re “down to the last tumor,” – which will likely and hopefully be the one in my left breast that started this whole thing – the surgeon will go in, remove my left breast implant, and get rid of that lump. Then, I’ll go through a series of radiation treatments to make sure we got every last cell.

That’s when the lump in my left breast will be gone for sure. And I’m so looking forward to that day. Because even though I understand the course of my treatment, it is psychologically difficult to walk around with a lump in your breast every day, knowing full well that this hard tumor the size of a shooter marble is cancer.

I feel it. I know it’s there. I want it gone.

All things in their time.

Copyright 2011, Amy Rauch Neilson

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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





Hair Today, Gone Tomorrow? Maybe, Maybe Not.

18 02 2011

Me, hairless and happy, at Alpenfest, Gaylord, Mich., July 2006

Two days ago, I called and made an appointment for an up-do. We have a family wedding this weekend and I love to have my hair done up for special occasions.

That call was actually quite ballsy, quite brazen of me.

That’s because, by the time my appointment rolls around on Saturday afternoon, I might not have any hair to “do.” At which point I’ll have to call my hair stylist and say, “Yeah, about that appointment…I need to cancel. My hair fell out overnight.”

Overnight?!

Yes, that’s a realistic time frame for how it happens. It not only happens quickly, it happens on schedule.

During my last go-round with breast cancer and chemo in the summer of 2006, it was exactly as my doctors predicted. Seventeen days after my first treatment, my hair began falling out. Within 24 hours, I was bald.

We were at a family reunion in the mountains of northern Georgia at the time, camping out in a pull-behind when I lost the first patch. I had just showered and blown my hair dry. I was standing in front of the mirror over the tiny bathroom sink when it happened. I ran a comb from my scalp to the ends of a section of hair. I felt an odd “release,” and when I looked at the comb, I saw that my blonde tresses were enmeshed in the teeth.

I remember thinking, “Oh geez. Here it comes, and there it goes.”

I tried to salvage it as best I could, but by the next morning, most of it lay on my pillow. I
acknowledged that it was a lost cause and I shaved my head. Even is better than patchy. Trust me on that.

When it comes to chemo and hair loss, it is literally hair today, gone tomorrow.

But this time could be all together different.

Yes, it is possible to go through chemotherapy treatments and not lose your hair in the year 2011. Though not even five years have passed since I last went through chemo, it’s a whole new ballgame. A paradigm shift, if you will.

In 2006, I was on a chemo regimen of Adriamycin and Cytoxan. Probability of hair loss: 99 percent.

This time, I’m on a regimen of Gemzar, Carboplatin and BSI-201 — the PARP Inhibitor. Probability of hair loss, according to the Clinical Trials nurse, Robin, about one in six. If you do the math, that means I have about an 83 percent chance I won’t lose my hair this time.

Why is that so important at a time like this? Lots of reasons, the least of which is vanity.

Last time, my son was an infant. He didn’t know the difference. This time, he’s a bright, five-year-old little boy. He’ll know the difference. And I want to shelter him from the blow of my illness as much as I can.

Last time, as a Stage 1, I only had to do two months of chemo, and then my hair began growing back. I had a short ‘do by Thanksgiving. This time, as a Stage 4, I’m looking at about nine months of chemo. I’d be bald a long, long time.

Last time, every time I was out and about sans wig, people stared. Sometimes, they looked on with pity. Other times, they stopped me and asked questions.

I don’t have to tell you that I don’t mind talking about what I’m going through. But I don’t want to talk about it all the time. Keeping my hair means I can go out into public, a cancer patient incognito, if you will, and enjoy being with my friends and family. No stares. No looks of pity. No questions from strangers.

So, when will I know? According to my doctors’ calculations, if I’m going to lose my hair this go-round, it ought to happen any day now. But, if it doesn’t happen by Tuesday, I very well could be…home free!

Last night, we had dinner at my bff Tabitha’s house. After we finished off the spaghetti and piled our plates in the sink, we were sitting on the couch when she noticed. In the last few days, I’ve taken to twirling a lock of hair around my fingers, and then giving it a gentle, almost imperceptible tug. Most people wouldn’t have caught it. But Tabitha knows me too well. She did.

“Honey,” she said. “Try not to get your hopes up too high. I don’t want you to be devastated if it does fall out.”

“It’s not going to,” I said. And I made her reach over and do “the tug.”

My Dad used to say, “If I were a betting man…”

Well, I am a betting woman.

And I’m betting that this time, I keep it.

By Tuesday, I’ll know. And I’ll let you know.

In the meantime, please “root” me on. Pun fully intended.

Copyright 2011, Amy Rauch Neilson








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