An Early and Unexpected Birthday Present

28 11 2011
Me, about to light the candles on one of my favorite “birthday cakes” — pumpkin pie! — in 2007, one year after finishing treatments for my Stage 1 breast cancer diagnosis in 2006. And yes, those are my boys — Don and Theo – in the background.

Let me tell you about my birthday. When my birthday is coming up, EVERYONE KNOWS. I make sure of it. And it’s always been that way.

Until this year. I can’t put my finger on exactly why I feel differently about my birthday this time around. Of course, there’s the cancer diagnosis from January. But to me, that should be MORE reason to celebrate November 29, 2011. Still, so far, I’ve been unusually quiet about the occasion.
When it comes to my birthday, I’ve got a rep for being downright obnoxious — in a way that has earned me a label as a prankster. One year, when I was an English/Writing Instructor at Washtenaw Community College in Ann Arbor, Mich., I told my freshmen Composition I class that there were “just 14 shopping days ’til my birthday,” and that if they wanted to view my Birthday Wish List, they could go to www.amysbirthday.com. Of course, the site didn’t really exist, and after watching several of my freshmen students (poor things) taking copious notes, I let them know that it was all a ruse.
But I have always loved my birthday, and the occasion has grown from my birthDAY to my birthWEEK and finally, in recent years, my birthMONTH! I’ve been known to call close family and friends to remind them that there are “only 28 shopping days left til MY BIG DAY,” and to continue the countdown via text and email, unti they are weary, though I am still grinning.
So, why the kabash on the joy I feel every year about the celebration of the day I came into this world? Is it the new diet, and the fact that I can’t eat birthday cake? No. I don’t think that’s it. My best guess is that perhaps I feel some sort of irrational need to stay “under the radar” this year — lest some power out in the universe hear the ruckus and decide that this birthday is my last.
Or, maybe it’s more simple than that — that somewhere, deep down inside, I hold a terror in my heart that that could simply be true. That’s the way I felt yesterday afternoon, as I unwrapped bulbs to put on the Christmas tree. Each time, I wondered if it would be the last time I’d be unwrapping and hanging that bulb.
Then came today. Today, I received an unexpected birthday present.
Last week was supposed to be a chemo “on” week, but my platelets — low enough to send me to the ER on Nov. 18 — still had not recovered. Typically, after one week of rest, they will bounce back and I can get treatment. So, this morning, quite expecting that this would be Day 1 of four infusions over the next 11 days, I got into the car with my cousin and chemo driver, Lori Parker, and off we went.
When we got to the hospital, my blood counts told a different story. And truly, I was surprised. I’ve been feeling a little tired lately, it has indeed been a looonnnggggggg year, but what could I — what could anyone expect after 10 months of chemo? My counts — even with the extra week of rest — had not recovered. My platelets were actually even lower than they had been when I was in the ER. Time is what it takes to create platelets and send my counts back into the normal range. But a lot of time had elapsed, and still, nothing. To add to the issue, my white blood cell counts were low and had also not budged.
What to do? That was the question.
So, me, my cousin Lori, my Physician’s Assistant, and the nurse from Clinical Trials all put our heads together and ran through the options. What is becoming more and more clear to everyone on my team as I continue this brutal protocol (my current protocol in comparison with others is quite taxing both in the time commitment and the potency/side effects of the drugs I’m taking) is that my body has just had it. I’ve been saying that for weeks to those close to me: This chemo regimen is really wiping me out.
I feel like I’m in the boxing ring and every time I get knocked down and the referree stands above me, counting to 10, it’s taking me til 8 or 9 to get back up, rather than the 2 or 3 of several months ago. And I mean that from not just a physical, but also a psychological, standpoint. I have a pretty high threshold for the pain and misery the treatments have brought this year, as the trade-off of LIVING is something I cannot put a pricetag on — but even I feel like I’m at my wit’s end. And that’s exactly what my PA saw in me this morning.
Still, the question remained: What to do?
The options are better than I imagined. Though I’ve always known that there is an arsenal of breast cancer drugs from which my doctors can pull in our continued quest to battle the monster and win, I didn’t realize just how much some of these drugs could change my life — for the better. Not only in their efficacy, of course. But also, in my quality of life. That’s a biggie, as lately, between the beating I’ve been taking via the chemo drugs and the huge adjustment I’ve had to make with the new anti-cancer diet that I’m on, I’ve been watching my quality of life wither.
Though my blood counts do eventually rebound each time into a range that allows me to go through yet another round of chemo, each time, they not only bounce back a little more slowly, but they fail to reach the threshold of previous levels. This, in short, means my bone marrow is having a very hard time recovering.
What to do? Perhaps move to a different chemotherapy drug. While my results this year have been very good — after all, my cancer has not grown and has actually shrunk some — were the PARP Inhibitor in combination with other chemotherapy agents the “silver bullet,” as my PA pointed out today — I’d likely be in remission. The results are good, but we can hope for — and work toward — better. And, with the message my body is clearly sending out — now might be the time. I may be moving to a new drug as early as next week. My oncologists will be discussing my options this week and I’ll learn more at next Monday’s appointment.
What does this mean for me? Things I hadn’t even yet considered; places I hadn’t yet allowed my mind to go. The drug that was proposed today is an oral form of chemotherapy with little toxicity and few, if any, side effects. And if I do exhibit the side effects, the dose can be adjusted accordingly to eliminate them.
The “frosting” on this “birthday cake” is that this new drug would give me back something that has been steadily waning over the course of the year — my quality of life. I would no longer need to go to the hospital three days a week as part of my treatment protocol. Instead, I would take this drug orally, at home, 14 days on, 7 days off. I would need to see my doctor only once every three weeks, just to check in.
Instead of spending my days lining up chemo drivers and people to pick up or drop off Theo when I’m just too sick, or drawing up a schedule that includes days when I KNOW I’ll be sick, I could potentially and very hopefully return to a more normal — or even a normal — work schedule. What a thrill that would be! And no longer would so much of my life revolve around my chemo schedule — like travel — as my chemo would be “portable.” Should we decide we’d like to get away and visit friends, I don’t have to search the calendar for my “week off” — and then wonder if it really will be my week off  — or if chemo will be delayed for any number of reasons, our plans thrown by the wayside.
The best part of all is that this drug has proven to be very successful in breast cancer patients and is one that I could stay on for years, should I need to. Even if I go into remission, this is a drug that I could continue to take in order to keep me there. A maintenance drug.
And, as my PA pointed out, this drug would continue to buy me time as we wait for the even better ones that are coming down the pike. Next week, she’ll be in attendance at a breast cancer conference in Texas, where she’ll be learning all about what’s on the cutting edge in breast cancer treatment.
All of this came as a complete surprise to me this morning — a delight. And just ask Don — surprising me is one challenging task. (He long ago nicknamed me “micro” because he says I’m such a micro-manager.) But indeed, I was surprised, and it couldn’t have come at a better time.
I’ll learn more next Monday, but, as I left the doctor’s office this morning, the potential of moving over to this new drug, based on the feedback from my medical team, seems quite real and very likely. Not only that, but my exam today went very well. My team is really pleased with how well I’ve battled the cancer this year. I do not exhibit the signs of a “cancer patient” — like shortness of breath, cough, extreme fatigue, or “looking sick.” My lungs sound beautifully clear as a church bell, ringing through the air on a crisp, clear Sunday morning.
I’ve been lucky enough to carry on with much of my “normal life” since my diagnosis — as you know from reading my blog posts. There has still been plenty of real life there for the taking — and I’ve been pouncing on the opportunities. Now, it looks like we might be moving forward into a place that would allow me even more of those opportunities. What a thrill! Way to make me smile!
Happy Birthday to Me. And, when I blow out the candles on my cake tomorrow (even though I CAN’T eat it), you know what will be on my mind as I make that magical wish.

Copyright 2011, Amy Rauch Neilson

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Rapunzel…Let Down Your Hair!

27 02 2010

Me, sporting one of my wigs and a crown of flowers, with Theo at the 2006 Gaylord, Mich. Alpenfest

It took me nearly four years, but I finally did it. Yesterday. I donated all of the wigs, bandanas and a knit cap I wore when I was going through chemo. It wasn’t as easy as it sounds.

I came across them a couple of months ago, when I was cleaning out my closet. There was the wig with the long, thick blonde hair that I’d sometimes pull up into a ponytail or through the back of a baseball cap, the shoulder-length one with soft waves that had fooled everyone at my high school reunion, the sexy Marilyn Monroe platinum blonde one that I wore when I was feeling well enough for a night on the town.

As I searched a little farther back on the shelf, I saw all of the bandanas my cousin Christine had made for me — the wedgewood blue one covered in tiny silver stars, the bright yellow one with jewels sewn in the shape of flowers, the breast-cancer-ribbon pink one, and my favorite — the tie-dye one. At the very back, I came across the sable knit cap my friend Maureen had knitted for me over the course of the cold winter weekend when I’d first received my diagnosis. I took everything off of the shelf, packed it carefully and set it aside. I’d bring it with me to my next appointment at the Beaumont Breast Care Center.

Yesterday morning, I grabbed the bag and threw it in the car. I was off for my quarterly blood draw.

After my appointment, I stopped by the Resource Center. That’s where I met Ruth, the soft-spoken woman with the silver hair who oversees the Center.

“I thought maybe someone else could use these,” I said. As I opened the bag and began unpacking its contents, I found myself sharing moments from 2006. “I wore this tie-dyed bandana to a Tigers game in June, and here’s the wig I wore to my high school reunion. It did the trick — no one even realized I was going through chemo.

“This one — well, it made me feel sexy when my husband and I were out celebrating our 7th wedding annivesary,” I continued. “And surely someone could use this knit cap in weather like this,” I said, thinking of an older, bald-headed woman being pushed in a wheelchair I’d seen in the Cancer Center just a few minutes earlier.

Ruth listened intently and patiently as I made my way down to the bottom of the bag. There was a brief silence and then I looked into her eyes and, by way of explanation, said, “I’ve had this stuff for four years now, and I meant to donate it sooner. But I guess I was afraid to — afraid, somehow, that I’d be tempting fate.”

Ruth put her hand over mine, nodded gently and said, “Lots of women feel that way.”

I told her that I’d be celebrating my fourth anniversary cancer-free on March 3, 2010, and that I was finally beginning to feel a little more secure, a little more sure that I was going to be OK.

“I won’t be needing these anymore,” I said, perhaps more to myself than to her. I turned then, leaving everything sprawled on the table in her office,

The bandanas, the wigs, the knit cap have a job to do for other women who are going through what I once did, not so long ago. It was time for me — and for them — to move on.





Guest Post: Gene Positive Status is Not a Life Sentence

4 02 2010

Editor’s Note: The first email I opened this morning was from across the pond, written by a young woman who had just received news of her BRCA 2 positive status. Her words are so poignant, so valuable, that I wrote to her immediately and asked if I could share them as a Guest Post. With Natalie’s blessing, here they are:

by Natalie

I received the results of my test today – and I carry the BRCA2 gene. I guess I knew I did, although until this morning I still lived with that tension between being resigned to the fact that I probably did have the gene, and that secret, guilty hope that I might not. The probability having been 50/50, I always had that image of a coin flipping, or Schrodinger’s cat, and imagined myself getting either the good, or bad, news, and my two very different reactions.

I’m 29, my mother first got cancer when I was 11 (when she was 39), so the time for me to start the process of preventative treatment is now. I’m British and I live and work in Spain, and the one thing that shocks me, culturally, reading the posts on this blog, is the additional stress that these women have to go through regarding what the insurance will or will not pay for. Obviously health care is free in the UK and Spain and my mother, having had three separate cancers, is still alive, happy and strong and has never had to pay a single penny.

I also just happen to work as a researcher in a medical anthropology department and plan on writing a paper on the differences that my sister and I have encountered in the Spanish and British genetic testing services (genetic counselling is obligatory in the UK, whereas it is not offered here in Spain).

I plan to make further posts in the future and I’d be interested to hear about other peoples experiences of genetic testing etc.

Like my doctor said today, this is not a life sentence. There are actions we can take, and it is not the end of the world.

After writing this post, I’m starting to feel better already.





Hats Off…Rhonda Traylor’s Story

12 08 2009

Rhonda Traylor and me, in the moments following our graduation from Antioch University McGregor, June 29, 2008

Rhonda Traylor and me, in the moments following our graduation from Antioch University McGregor, June 29, 2008


I met her in a sea of long black robes and mortarboards. I’d just come down from the stage, where I’d had the privilege of speaking in front of 3,000 people at The Schuster Center in Dayton, Ohio. It was June 29, 2008 and finally, after four years, the birth of my son and a battle with breast cancer, I was about to receive my master’s degree from Antioch University McGregor. It’s a day that was a bit surreal because there had been a time not so long ago when I thought this day might not ever come — in the days following my breast cancer diagnosis.

But it did. And I did it. Not only did I walk across the stage to receive my degree, but I did something that just a few years ago, I wouldn’t have thought possible. I told my story, my family’s story, the story of the BRCA 1 gene, before a crowd of a few thousand. (To read the Speech, “The E-Turn in Life: Being the Difference” in its entirety, see the Speech button at the top of the homepage.)

I shared just how our gene-positive status had impacted the women in my family, from my grandmother to my mother, my sisters, my niece. I shared the power and the wisdom that can be extracted from even the most difficult circumstances life throws at you — and that I do, indeed, believe it is my responsibility to reach as many people with my story as I can. I never imagined for a moment that some of my fellow BRCA 1 and 2 peers were sitting in the audience, listening to my words.

Then something even more amazing happened. I returned to my seat and the music for the processional began. A long line of graduates in flowing gowns and tassles passed me en route to the stage.

Suddenly, a young African-American woman stepped out of line. She walked the few short steps to my seat, stood in front of me, removed her cap, revealing her bald head, and whispered, “BRCA 1” in my ear. She gave me a hug, then quickly replaced her cap and made her way up the stairs and across the stage.

Following her lead, graduates began to step out of line on their way to the stage, hugging me and sharing a few quick words of inspiration. The outpouring of love and appreciation from my fellow graduates — many of whom were strangers — was one of the most amazing and powerful moments of my life.

I caught up with that young woman following the ceremony. Her name is Rhonda Traylor and she is BRCA 1 positive. On that day, she was in the midst of her battle against breast cancer.

“I didn’t know if I would be able to make it across that stage,” she later told me, as she was so fatigued by the chemotherapy treatments. “They had a wheelchair ready for me, in case I needed help. But I was determined to make it!” And she did.

Rhonda and I still keep in touch and I am thrilled to say that she has finished her treatment and is doing well. She is an amazing person — bright, funny, glass-is-half-full, even on the darkest of days. And how ironic that, that day, Rhonda thought I was the hero for my willingness to share my story.

But I, I have a different version of that day. It’s the story of a young woman fighting breast cancer who willed herself to make it up the steep steps and across that long stage to receive her diploma. That is a true hero. To Rhonda Traylor I say, “You go, girl!”





Guest Post: Pumas in the Crevasse

24 05 2009

Guest Blogger and Survivor Gene Rooks tells why she decided against reconstruction.

Guest Blogger and Survivor Gene Rooks tells why she decided against reconstruction.

by Gene Rooks

Knowing Amy through our IClub connections, and sharing the breast cancer experience, I had to laugh at her stories about being naked in Iceland (see Naked at the Blue Lagoon post), and the decision to go with “innies” or “outies.” I also applaud her decision to go for reconstruction the whole way — including the outies. But I am a whole lot older than Amy, and I chose a different route.

Unlike some of you, I don’t carry a breast cancer gene. But at the age of 73, during a routine mammo, a suspicious shadow showed up. I went for the return screening on Dec. 5, and as the technician, and then the radiologist, came in and went over and over me with the sonar, I just knew something was there. At the same time, I had a feeling of complete peace come over me, as I also knew it was in God’s hands, and I would be all right, no matter what the progress of the disease might be.

Things happened so fast, I really didn’t have time to stress out over it. An immediate biopsy was ordered, and I reported to the doctor on Dec. 20 for the results. My dear husband was with me, very apprehensive. My two daughters, ages 45 and 50, were on tenterhooks about the possible diagnosis.

My surgeon was very capable, but not especially sensitive. He walked into the room and announced, “Well, it is cancer, and we will be doing a modified radical mastectomy.”

I wasn’t surprised, but I was speechless. I had expected he would slide into the diagnosis and discuss options. But my sweet husband, in utter shock, sputtered, “But, what will they put in its place?”

Now I found my voice. Quite firmly I said, “Nothing!” It’s funny that the initial discussion was about reconstruction rather than than the procedure itself.

The doctor assured him reconstruction could be done at the same time as the surgery, and they surely had enough fatty tissue to work with. But they also would need to reduce the size of my other breast, so they would match. My surgeon said, “You wouldn’t want an 18-year-old reconstructed breast next to a 73-year-old one!”

I again reiterated that there would be no reconstruction, as I wanted nothing to do with moving around any more tissue than necessary, and certainly not a surgical attack on the other breast.

All this of course was right before Christmas, with its usual full slate of activities and long to-do list. Again, I didn’t have time to stress, and didn’t. There was not a tear shed by me, or even any feeling of anxiety.

Surgery was scheduled for Dec. 30, and I was home the next day. A lovely way to start the New Year, but we had some remodeling scheduled for the kitchen and dining room, and we went right ahead with it, so I had plenty to keep on my mind beside my healing process.

The healing process actually wasn’t as smooth as the surgery itself. Fluid under the skin kept building up, even with the “ticks” in place to drain it. I had to have more installed, and when the skin eventually adhered, it developed a deep fold.

I was really upset by that. I complained to my surgeon that there very well could be pumas in that crevasse. He looked at me like I was nuts; he was too young to remember the Smothers Brothers. (For readers also too young to remember, they had a hilarious routine, the punch line was, “There are pumas in the crevasses.”)

He offered to do a correction, but I thought not. I did some research and found a plastic surgeon willing to do surgery to modify the scar area. It is strange that Medicare and insurance companies are more willing to pay the higher price for reconstruction than a much simpler scar modification, but I found one, and he did a wonderful job.

So, Amy, it is probably just as well I didn’t get to accompany the group to Iceland. I would really have gotten some stares with my original, now 76-year-old breast, and a nice, smooth, flat surface on the other side.

But I am happy with it, my wonderful husband doesn’t have any problems, and my clothes work just fine with my store bought silicone gel boob. And, most importantly, I am into the fourth year, all clear.








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