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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28 responses

28 11 2011
brian Murphy

WONDERFUL, WONDERFUL! (If you haven’t heard it lately, listen to the Johnny Mathis song.)

28 11 2011
Sharon Frisch

Praying this course of treatment will be the perfect one for you right now. Have a Happy Birthday!!

28 11 2011
FeelingSnarky

Happy Birthday and many more!

28 11 2011
Marie Petrides

Amy , what a wonderful Birthday present. I am so happy for you. May you have the best Birthday ever. I wish you all good things. With great health, good wealth and Happiness always. God Bless and I wish you strength in mind and body always……Marie

28 11 2011
kiapet51

Oh Amy, I am smiling a huge smile for you right now. I pray that this will be the right treatment for you and that you can have a much better quality of life. Have a wonderful birthday Amy. I think you should be entitled to celebrate your birthday not only on that day, not only that week, not only that month, but everyday of the year. I am looking very forward to this Saturday evening.

28 11 2011
Bob Adams

Happy Birthday…and many more. Will be waiting to hear more about the oral drug.

28 11 2011
Rita P

YES! What great potential in your news!

As you enjoy the anniversary of your birth, I hope you celebrate the fact that your birth (like each of us) was one of the most challenging, painful & difficult times you’ll ever face on earth, presuming you were delivered normally (vs a C-section).
I believe God purposefully plans it that way to show us that even as very tiny infants we can withstand extreme physical stress and great upheaval as we journey through the mysterious birth process. Consider what we endure with NO KNOWLEDGE of the outcome. Imagine how horrified and pained we feel, and so alone!! Yet the journey is not only well worth it, but the result also presents us with opportunities we could never imagine. Deep love and respect and joy!
Rita

28 11 2011
Kristi Rugh Kahl

And I thought your title was about the frog bracelet!! 🙂 lol. But I LOVE this news even more! Miracles are coming your way and this is just the beginning! So thankful for the ones working hard to find a cure for this monster and so thankful you have the right doctors to help you get what you need. HAPPY BIRTHDAY EVE!! and yes, there will be MANY, MANY, MANY, MANY MORE of those to celebrate with all of us!! xoxo

28 11 2011
Ken and Gay

Great news!! Your body is in need of a change and this will be a step in the right direction for sure!! Happy Happy Birthday to you dear Amy!!! The day of your birth is certainly one to celebrate – the world is a better, kinder more loving place because of your life!! And of course what about Frog Boy – where would he be without you?? Just a gleam in God’s eye!!! Birthday Hugs and Kisses 000XXX!!!!

28 11 2011
Marnie

Aim,
Have a Happy Birthday tomorrow sweetie!!! We are ALL wishing the same thing too…
Here are some of the lyrics to one of Nate’s favorite songs – “My Wish” by Rascal Flatts. We wanted to send them your way on this special occassion. Nate would love to sing them for you sometime.

“I hope the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you’re faced with a choice and you have to choose,
I hope you choose the one that means the most to you,
And if one door opens to another door closed,
I hope you keep on walkin’ ’till you find the window,

If it’s cold outside, show the world the warmth of your smile,
But more than anything, more than anything,

My wish for you,
Is that this life becomes, all that you want it to,
Your dreams stay big, your worries stay small,
You never need to carry more than you can hold.
And while you’re out there gettin’ where you’re gettin’ to,
I hope you know somebody loves you,
And wants the same things too,
Yea this, is my wish…..”

Here is to you my friend, and your wonderful spirit, energy, and soul! Here is to finding God’s grace in life’s smallest moments and biggest challenges. Here is to many more birthdays. You are loved!

28 11 2011
Alison

I’m so happy at this wonderful news Amy – wish you a wonderful birthday tomorrow and only happy times in the coming year……and hopefully next year you’ll be able to eat a huge slice of birthday cake!

28 11 2011
Jackie Tithof Steere

Happy Birthday, Amy. And many, many more.

28 11 2011
Sharon L-S

Happy Birthday Amy! Wonderful news about the new drug.

28 11 2011
Lori

I am so thankful that you didn’t jump up on the exam table and do a happy dance. I am grateful for your restraint during the discussion!! Love you a bit!

28 11 2011
Laura Kasischke

Amy, I think you’re in a great place. You’ve stopped the progression in its tracks, and if it weren’t for the chemo you’d be feeling cancerfree at the moment. If your doctors think it’s time to move to this other, less taxing, protocol, that’s so wonderful. It will give you more energy to focus on things like diet and stress reduction, too, which might also give you the ‘numbers’ you’d get from continue this particular chemo. Your platelets may be a message! I think this next year will be one of your best, and certainly not your last. xoxoxoL

29 11 2011
Anita

Hooray! So glad your doctors confirmed what you have known for awhile, and have a great new way to keep up your amazing progress. There are great things in store for you for many years to come! HAPPY BIRTHDAY!!!

29 11 2011
Kathy

Hope you have a wonderful birthday with many more to follow!

29 11 2011
Jennifer Bopp Stegbauer

The gift of time as a birthday present, what a great idea. I hope it all works well with the new meds so that you have time to recoup physically and mentally. Time is a luxury and you are going to be having so much more of it. You have really made it through a long haul these last months, I’m glad you yourself and your doctors are taking such good care of you and always staying on the lookout for new options.
Another thing we have in common: I also love pumpkin pie and have had it also as a “birthday cake” every now and again through the years. Yummy!

29 11 2011
pinkfund

Amy, wow . . . . I am fatigued for you . . . . call me if you have a chance .. . I hope to see you Saturday night for the light off . . . .

Molly

29 11 2011
Tracey

Happy Birthday Amy!

29 11 2011
Krista

Happy Birthday to you Amy! God is so good, sometimes we do not understand where we are going or what is happening but his love is never ending and he is with you and your family ALWAYS. I will continue to pray for you and your team of Dr’s as they put together your new plan of attack.

29 11 2011
Zoo

HAPPY BIRTHDAY! WHAT A GIFT!

29 11 2011
Auntie Helen

This blog really touched my heart,God Bless you on your very special birthday. Much Love oxoxoxoxoxoxoxoxox

29 11 2011
Linda Stanislawski

Happy birthday Amy, and many many more to follow.

29 11 2011
Maija Kibens

Amy, this is just delightful! You really are being presented a birth/day — and birth/week and birth/month…. present, clearly because of all the you have already been through to get your body to a point where such a switch is plausible. Bravo!

29 11 2011
Elaine

Again Happy Birthday and great news!!!

30 11 2011
kerri daugherty

Happy b-day Amy we love u. Kerri, Faris and all from feedrite

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Meeting A Cancer Diagnosis With Strength And Hope! | Healing of Cancer

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