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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Trying to Focus on Bright Rather Than Bleak

3 11 2011
It’s the Great Pumpkin, Theodore Neilson! Photo by Amy Rauch Neilson.

Life just feels really hard right now. So, I am extra, uber-grateful for moments like this one. On Sunday, Don, Theo and I went to a local pumpkin farm and spied this big orange beauty. It weighed in at 121 pounds — and that was WITHOUT Theo inside! 🙂

Usually, these prize-winning sized pumpkins go for in the neighborhood of $80. That’s why we’ve always stuck with the, er, well, more “traditional” size.
Not this year. The farmer told us he was offering deals that day. It was, after all, the day before Halloween and the demand for his crop would be plummeting in a matter of hours. He knew it and I knew it.  Supply and demand basics from Econ 101 back in my freshmen year of college…
“$34,” he said.
I shook my head.
“$25?”
“Nope.”
“I’ll give you $20,” I said, waving a crisp bill in front of his face.
“Sold!” he said, taking the twenty dollar bill, loading our big prize onto a dolly and heaving it over and into the back of our SUV.
It was a thing of beauty — the reflection of all of that orange in the back of our car. We drove to my bff Tabitha Green’s house, where it took six of us — Tabitha, Rodney, their daughter Lauren, me, Don, and Theo — about 2 1/2 hours to carve it. Talk about entertainment. We had a blast. Right up there with the best $20 I’ve ever spent.
We all stood back to admire our work when Tabitha said, “Hey, I bet Theo would fit inside!”
Theo’s eyes got wide and he looked like he wanted to simply disappear. He finally agreed — as long as he could keep his socks on. He’s got a thing about goop.
So, in he went, and indeed, he fit quite perfectly!
What fun we had with that pumpkin! I brought it along as a “prop” to Theo’s school for Trunk or Treat Monday morning. We lit it with an uber-large candle Halloween night and the kids who came to the door wanted to know if that great big pumpkin outside was real. Indeed it is, I assured them with a wink and a grin.
These are the moments of my life that I cling to when the going gets rough. And it’s been rough.
I consulted with the dietician who works with Dr. Waldo (the specialist from Indianapolis) last Friday morning. With the help of my bff Jennifer Amprim Wolf, I cleared the cupboards, fridge and freezer of all the things on the “cannot eat list,” of which there are many. No dairy, with the exception of butter and Almond milk. No sugar. No coffee. No beans (allergy tests showed I’m allergic). No gluten. No yeast. (We found one loaf of bread at Whole Foods that contains neither.) It’s a challenge, to say the least.
I’m allowed meat, like steak, chicken and turkey (I also have seafood allergies). And potatoes are fine. Lots of veggies and some fruit. Lots of nuts. Still, the choices feel so limiting to me and the change so dramatic. “You might feel a bit of depression as your body adjusts to the chemical changes of this new diet,” the dietician said to me. I’ve been feeling more than a bit of depression.
Yet, I’ve not cheated since I began the diet last Friday. I’m committed. Dr. Waldo told me that if I cheat, I have to start all over again. This current diet plan is quite strict, will go on for about 8 weeks, then hopefully, if my body has made progress, the dietician will slowly begin to add in more foods. I’m hoping for coffee, bananas and strawberries — all on the “no go” list right now. But we’ll see.
I’ve also had severe pain in my right rib cage. So Tuesday, when I went for chemo, the doctor checked me and is quite sure I have a broken rib. He sent me for multiple Xrays and an MRI. There’s concern over the CT Scan from two weeks ago — some possible areas of question along my spine. So, they’re taking a closer look there. I should have results today. Don is taking me to chemo so he can be with me for those results.
I’m really scared. If there’s progression, not only is that terrible news, but I would have to go off of the PARP Inhibitor — per protocol of the trial. I’m also down in the dumps because the oncology staff indicated Tuesday that my chemo regimen is a lifestyle — not likely to come to an end. I will have breaks — like the “chemo vacation” I’ll have in December — a whole month off. But as of now, they don’t see anything changing. Keeping my cancer stable and in check may mean indefinite, ongoing rounds of chemo. It’s hard to imagine living like this, permanently, three trips to the hospital two weeks in a row, one week off, repeat.
Each round of chemo is cumulative, and my body is getting really beat up. I liken it to a Rocky movie, where each time the opponent goes down, the referree begins the count and it takes longer and longer for the boxer to get up. This past week, that was especially noticeable to Don, who says I used to lie down for an hour long nap, then pop back up. Now, he finds it harder and harder to wake me. And, usually, I rebound well during my week off. Last week, not so much.
We’re looking into other options as well. The name Dr. Burzynski has come across my radar several times in the past few months, and more prominently so recently. He is a doctor based in Houston, Texas, who has patented a number of cancer-fighting drugs that are successful in patients with certain genetic fingerprints. Blood tests determine whether or not you are a candidate. The treatments are less toxic than chemo, and studies show, more effective. Don is knee-deep in research on Dr. Burzynski, as are many of our family and friends, and I’ve been asking my doctors for their opinions as well. I may be heading to Houston in the near future.
In the meantime, I’m trying to keep my head up and continue to do what I need to do to give myself the best chance of staying on the planet. Please pray for good test results today. I will keep you updated, and I will continue to post pictures of the bright moments in my life, of which I am blessed to have many.
Copyright 2011, Amy Rauch Neilson




Status Update: Back to Chemo

9 08 2011

I’m just now back from a day of chemo. Tuesdays are always the long day of the week, with three back-to-back-to-back infusions. My blood counts were well within range, no fever, all vital signs were good. Whew!

I’m so very pleased that I was able to return to my chemo regimen and get back on my schedule of fighting and beating this beast. I’ve been off/unable to have chemo since the end of June. We are back on track!

My bff Jennifer Amprim Wolf just dropped me off at home. She sat beside me all day and I shared a new-found secret with her: there’s a room in the chemo infusion center with heat/massage chairs…today was a “slow” day, so we were able to snag that room — and the chairs! Score!

Jennifer is walking the Susan G. Komen Three-Day for the first time this weekend in my honor as well as for others who have fought or are currently fighting the breast cancer battle. Go Jennifer! She has trained long and hard for this weekend. Please send prayers of sustanance and good fellowship her way. What a trooper!

Someday very soon, I hope to be at a place where I can do the Three-Day alongside her and my many other friends who take on this challenge every year. I will be touching base with Jennifer over the weekend to see if I can pop in and walk beside her for a short distance. Seeing a sea of pink is always uplifting and inspiring, if not downright euphoric!

But until then, it’s off to bed for me so I can recover from today. If I get a few hours in, I may feel well enough to spend some time with Don and Theo this evening. Low-key time. Maybe Theo and I will be able to watch the second half of Scoobie Doo and the Lake Monster, which we began watching last night.

Thursday’s chemo will also knock me down, but not quite as hard. Rest, as difficult as that concept is for me, is what I must do now.

Copyright 2011, Amy Rauch Neilson





Could the Future be NOW?

2 06 2011

Me, modeling the DNA-themed Art Bra I created along with my mother-in-law, at the Bras for a Cause event, Royal Oak Music Theatre, September 18, 2010. The PARP Inhibitor has proven to be particularly effective in BRCA gene carriers like me. Photo by Trish Baden MacDonald.

I’ve got Google Crawler working for me day and night, when I’m working, sleeping, at the infusion center, hoping to catch a ball at a Tiger’s game, making fruit-kabobs for my kid’s kindergarten class.

When GC finds something related to the BRCA 1 or BRCA 2 genes, the PARP Inhibitor — or any of the related key words I’ve sent it out into cyberspace to fetch, I get an alert in my e-mail box. I’m particularly excited about the one that came through today.

From the article:
“This drug is a very potent PARP inhibitor. It has already demonstrated very encouraging activity as an IV formulation and now we know that the oral formulation is also active. This potentially opens up many exciting opportunities for long-term treatment for cancer patients,” said Professor Hilary Calvert, Director of Cancer Drug Discovery and Development at University College London, UK, and a pioneer in the field of human cancer therapy with PARP inhibitors. “We know that PARP inhibitors are active in germline BRCA-mutant (gBRCA) tumors, and that this activity extends beyond this group of tumors into broader patient populations in ovarian cancer and may do so in other cancers as well.

“PF-01367338 is currently in a Phase 1 clinical trial examining the maximum tolerated dose of oral PF-01367338 that can be combined with intravenous platinum chemotherapy (the kind of chemotherapy that I am on) in the treatment of solid tumors. This program is supplemented by two ongoing trials, currently using the IV formulation: a Phase 1/2 study in gBRCA breast and ovarian cancer and a Phase 2 study in the adjuvant treatment of triple negative breast cancer (the kind of breast cancer that I have). Clovis Oncology intends to replace the IV formulation with the oral formulation in these studies.”

Now, some backstory.

One of the most miraculous phrases my oncologist uses in describing the war on breast cancer and how close we are to the end is her belief that breast cancer is already a long-term manageable disease, much like, in her opinion, diabetes and hypertension.

There are so many different breast cancer treatments out there right now that if one doesn’t work, there’s another go-to drug. And while you are holding the disease at bay with one drug, others are coming online. Not over the course of years, she’s explained to me, but in days, weeks, months. In fact, the PARP Inhibitor that is part of my current treatment — and has demonstrated to be particularly effective in patients who carry one of the breast cancer genes, as I do — only came online 14 months ago!

All of this is amazing news that gives breast cancer patients, even those in Stage 4 like me, a lot of hope that long-term survival — and a good quality of life during that survival — is not a pipe dream, but a reality. My doctor has told me numerous times that while she of course has no crystal ball, she believes I will live for years. We are not looking at a prognosis of just three, six, twelve months left to live. Even at Stage 4.

I’m thrilled that I was offered the opportunity for the PARP Inhibitor to be a part of my chemotherapy regimen, along with Carboplatin and Gemzar. The PARP Inhibitor is currently a Phase 3 clinical trial drug, one that Royal Oak Beaumont worked hard to be able to offer. One I am so very blessed to get.

Right now, the PARP Inhibitor is an IV-drug only; its oral form has not yet been proven safe. During the two out of every three weeks that I receive chemo, I receive a dose of the PARP Inhibitor on both Tuesday and Thursday. But my doc has known all along that its oral equivalent was in the works — and she’s kept me updated.

Today, the article that Google Crawler flagged for me details, among other things, another huge leap in the development of an oral form of the PARP Inhibitor. What makes this so exciting is that it means the future my oncologist sees could soon be upon us.

She told me a few months ago that someday, not too far down the road, patients like me will be going to the pharmacy with an Rx for the oral version of the PARP Inhibitor, and going home with pills to take it as part of our daily meds the way a patient with high blood pressure does now.

Imagine the change in my life, in the lives of other people with breast cancer, when drugs like the PARP prove not only effective, but become available in a pill form. Breast cancer is kept at bay, my life does not revolve around trips to the infusion center and days of nausea and fatigue. We reach yet another milestone in the war against breast cancer — and continue to rachet up the quality-of-life factor.

Even better, it seems there is a whole family of PARP Inhibitors coming online that give new hope for a better future not just for breast cancer patients, but prostate and other cancer patients as well.

I am certainly not a medical doctor by any means, but I keep myself a well-informed layperson. Check out the article. The future could be upon us.

My job is to hang in there — even on days like last Thursday, when I was sobbing as I waited for my ride to chemo, because I simply did not want to go. I did not want the infusion or the sickness that follows, that I already know all too well.

But my job is to go and keep on going, no matter what. To take advantage of the very best science and medicine has to offer while I await the next best. Until someday, my disease is in full remission and I’m able to keep it that way.

As I was walking to the ballpark Tuesday evening with my friend Jodi, I said, “You know, Jodi, even if this was the best we could do, the best we could ever do — two weeks on, one week off — I still have a darned good quality of life in between infusions and I’d take this gladly over the alternative, any day of the week.”

But my bet is, I won’t have to.

Copyright 2011, Amy Rauch Neilson





Oh, Great Crappy Day!

14 04 2011

Today, I felt physically horrible. Yet, great things happened.

Physically horrible because not only are my white blood cell counts down — which meant Don has had to give me shots of Neupogen the past two nights, the injection that helps my white counts to recover, but makes every bone and muscle in my body ache in the process.

This Chemo Round, there’s also the added complication of a low Hemoglobin count. Tuesday’s chemo was a game-time decision; the doctors considered my counts before finally deciding to go ahead with my infusions. I was given an extra infusion of a drug called Procrit on Tuesday along with my standard chemotherapy drugs, in the hopes that my counts will recover and I will not need a transfusion.

But speaking of great things, I was humbled and deeply touched by the number of people who stepped forward yesterday and today to offer to roll up their sleeves and donate their blood for me, in case I do need a transfusion. Don’t ever bother to tell me there aren’t a lot of wonderful, giving people in the world, because I won’t believe you. Not for a second. I’ve seen way too much to the contrary to ever believe anything else.

And on to more great things — today, I heard from television, print, and radio media regarding upcoming interviews to help get the word out there about my story, the unlikelihood of this diagnosis after all of the preventative measures I took and the aggressive treatments I underwent, and the hope that this information will help to save lives, many lives through better methods of self-examination post-mastectomy as well as monitoring.

I have dreamed of starting a foundation for more than two decades. I wasn’t sure exactly what shape it would take, but I’ve always wanted to find a way to help people on a large scale. I think the pieces of the puzzle of just how that will happen in my life are beginning to fit together.

I had the good fortune to end up spending more than two decades as a financial writer/editor, which means I have acquired a good understanding of investment vehicles and how they work. My plan is to use this background down the road to manage the financial end of my foundation to help all donations and revenues to grow and thrive so that the funds can help as many people as possible.

I see the foundation as growing out of http://www.itsinthegenes.org in a multi-faceted way. I have big plans, many of which I am already moving from the planning stages into the actual implementation of the ideas.

It’s all, always, in God’s time. And He, no matter how confusing or difficult the circumstances in which you find yourself, is always right.

Copyright 2011, Amy Rauch Neilson





Begging for Chemo?

22 02 2011

Theo insisted we "picnic" on my bedroom floor before I left for the hospital yesterday.

Mondays are blood draw days. The docs need to check my counts to make sure my body can tolerate the chemotherapy treatment. I offer up my arm, they take the sample, and within a few minutes, they’ve got their answer.

Yesterday, everything looked good. Except.

Except one of my blood counts, which was at 1.2. It needs to be at least 1.5, or I can’t have the Carboplatin & Gemzar component of my chemotherapy today.

You’d think I’d be happy to be able to duck out of it. After all, I got a taste of the good life last week — my week off chemo — and, hey, I could get used to that. Real quick. Not to mention my worst side-effects come from the C&G. The PARP is mild in comparison.

The C & G drugs are part of my Tuesday trio — Carboplatin, Gemzar, and the PARP Inhibitor. Whatever my counts, I can still get the PARP.

But I’m a glutton. I want all three.

I was sitting on the edge of my seat — OK, make that the edge of the examining table — when Cynthia Kresge, the Physician’s Assistant from my team, came in with the run down.

“One-point-two is too low,” she said as she skimmed the stats, zeroing in on the single outlier.

My heart began racing, my mind churning with possibilities of how I could get around that number and get my full dose.

“Is there anything I can do?” I asked.

“Well, yes,” she said. “We’ve found that exercise — like a brisk 15 minute walk — can boost this count enough to get it to where it needs to be.”

“I’m so there,” I said, already visualizing myself doing laps around the hospital corridors before offering up my arm once again Tuesday morning.

Then, I realized how strange it sounded, this begging for a chemo treatment thing that I was doing.

“Bet you don’t get that much,” I said.

“Actually, we get it all the time,” Cynthia said. “People want their treatments.”

So do I.

Send up some prayers to heaven today that my count is up and over the top by the time I get to the hospital.

I’ll get back to you later on that.

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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