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





“Don’t Look Around. Look Up.”

19 11 2011

Photo Copyright 2011, Kathy Stadtfeld

Editor’s Note: A two-part article on me, my family and the BRCA genes appeared Sunday, Nov. 20 on the front page of  The Detroit Free Press. Part II appeared Monday, Nov. 21.  Also, the Canton Observer ran a nice piece on the Dec. 3 Sky Lights of Love Benefit. You can go to the Events tab on the blog homepage and click on Upcoming for more info.
When my close friend Kathy Stadtfeld shared this photograph with me, I was astonished.  I hadn’t yet shared the story of that January night with her, but somehow, she had captured on film the very vision of God’s pure white light as I see it in my mind’s eye.  I begged her to let me use it on my blog.  “But of course,” she said.

It was three-thirty in the morning on a cold winter’s night last January. I was sitting alone in my home office, exhausted from the physical and emotional battering I’d taken. In the two weeks leading up to that night, I’d found a lump wedged between my left implant and the thin layer of skin on my chest. I’d been through a biopsy and very quickly learned that yes, breast cancer is possible without breasts. I’d undergone surgery to have a port inserted on the right side of my chest, in anticipation of numerous rounds of chemotherapy. I’d been through a very painful lung biopsy to confirm what we already suspected — the cancer had spread to my lungs. I was a Stage 4.

That’s a heavy dose of hard reality for anyone, but especially for the mother of a five-year-old boy. Hours earlier, he’d  fallen into a deep sleep, not a care in the world, clutching his stuffed bear. I’d just finished reading to him about the antics of a monkey named Curious George.

Beside me in bed, my husband, Don, had finally succumbed after a string of sleepless nights filled with the terror of my diagnosis, his world closing in and crumbling around him. I couldn’t sleep. My tossing and turning disturbed Don, who would change position or roll over. I decided that if I was going to have insomnia, it’d best be someplace else. I crept downstairs.

Nighttime never seems darker than in January. Gusts of wind blew the tree branches to and fro, and they took turns scraping noisily against the windows, then the side of the house.

I was alone and completely exhausted. I had nothing left to give the night. No more tears, no more worries, no more ‘what ifs’. I was done. After what must have been an hour or more, I thought about heading back upstairs to bed, but couldn’t summon the energy. So, I sat there in the dark, at my desk, the mixture of snow and freezing rain pelting the skylights like so many forks striking champagne glasses at a wedding reception.

And that’s when it happened.

One minute, I was sitting there in complete darkness, silent, ridden with fatigue. The next, I was filled with a white light. A powerful, pure, all-encompassing white light.

I never saw the light, yet I knew instinctively that it was white. Then words: Everything’s going to be OK. YOU are going to be OK.

But the words weren’t audible. I can only describe them as a rapid-fire communication that came from someplace outside of me and entered my mind in a nanosecond. It wasn’t a conversation. It was an understanding.

I felt nothing but peace and serenity in those fleeting moments. And they were fleeting. As quickly as the white light filled me, the message was communicated, they were gone.

I was still sitting in my office, but I was different. I knew. I knew that it had been a message of comfort from God.

And though it took me a while to process, to truly absorb, what had happened that night, I’ve never had any doubt as to what it was. Not for a moment. Not even a flicker.

It’s going to be OK. I’m going to be OK. And I have a lot of work left to do here on earth before it’s my time. This I know for sure.

Yet, I’m a mere mortal and inherently flawed. And though I’d like to tell you that since that night, I’ve been able to push all fear, all doubt, all questions aside, and proceed with utter confidence, I haven’t. There are still times — and plenty of them — when I am wracked with sobs, days that are filled with despair, void of hope.

Perhaps my sister Julie said it best when she told me that during the toughest, most grueling of moments, I must not look around, but rather, up.

That’s a tall order when you’ve been hurled into a world of white coats, blood draws, chemotherapy infusions, regularly scheduled scans to see whether you are one of the lucky ones whose cancer is shrinking…or not. When, in the months that followed, you hear over and over again the words from the people here on earth who preside over your course of treatment:

Stage 4 breast cancer is incurable.

The average lifespan for a patient with your diagnosis is three years.

You think you can live 20, or even 10 more years? That’s just not realistic.

You will need to undergo some form of  chemotherapy for the rest of your life.

Each utterance is a blow, some harder than others, but all require psychological recovery time in much the way my body needs time to rebound physically after each chemotherapy infusion. It is hard to remember to look up when the script is playing out all around you.

I have my tough moments, times when I cannot imagine continuing this course of treatment that on numerous occasions has physically ravaged my body to the point that I’ve needed to be hospitalized in isolation, or transfused with platelets and bags of whole blood. Times when the ER doctor has looked at me and said, “You’ve got about a 50/50 chance of making it.”

Yet, I will continue. Because I know I am on the path to healing and that my work here, God’s work, is not done. Not only did He tell me so, but I’m watching it play out. Just this past week, a member of my medical team remarked that my results from nearly a year of treatment — 44 chemotherapy infusions — have been “robust.” I love that word and the context in which it was used. Indeed, my progress has been steady, with each scan revealing a continually shrinking cancer, along with areas that have fully healed.

Still, I know the road ahead will continue to have its twists and turns, its bumps and potholes. It is in those darkest of moments when I need to remember the light and the communication from that dark January night, and my sister Julie’s words. “Don’t look around. Look up.”

Copyright 2011, Amy Rauch Neilson





Guest Post: The Story Behind the Story

8 11 2011
By Kristi Rugh Kahl
A few weeks ago, Amy’s husband, Don, was driving home from work in his pick-up truck when he first heard “I’m Gonna Love You Through It,” by Martina McBride, on the radio. He was so deeply moved by the song that he had to veer over to the side of the road afterwards and pull himself back together.
The next day, he forwarded the music video to Amy with a simple message: You need to watch this, babe. Amy did, and her reaction mirrored Don’s. Tears flowed and she found great strength in the knowledge that, like Don, so many people everywhere stood strong in this fight together with their loved ones, right by their side, every day, every moment, every surgery and treatment.
“I can’t imagine what it would feel like to have so many people gather around you to release lanterns of pure white light heavenward,” Amy said. I decided it was time for Amy to experience it for herself. This is the inspiration behind our upcoming benefit, Sky Lights of Love, December 3, 2011, at the Van Buren Township Lookout Point, Van Buren, Michigan. No matter where you live:

You can Participate!

  • Purchase a Lantern, and join us as we gather together to release hundreds of lanterns of light over Belleville Lake in Amy’s honor ! Lanterns will be distributed when you check-in at the event.  Lanterns are available by pre-sale onlyPurchase Lanterns by November 20, 2011.  No Lanterns will be sold at the door.
  • Can’t be there? You can still purchase a lantern, and we will release it on your behalf.
  • You can make a donation to the event here!
We have already been pleasantly surprised by the number of lanterns sold today and donations made for the Benefit — just hours after we announced it yesterday. Thank you! We are off to a good start. We look forward to seeing as many of you there on Dec. 3 as possible!
Don’t forget to check out the Martina McBride video. Not only is the song gorgeous, but it will give you a good visual of just how amazing and beautiful these lanterns are as they soar through the night sky.
Copyright 2011, Kristi Rugh Kahl




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




Dark Clouds, Yes — But Don’t Overlook the Silver Lining

16 08 2011

Photo courtesy of: jittajack.blogspot.com

This is Week 2, Round 8 of chemo. That means I’ve now sat through 30 infusion days — and 120 total infusions — since chemo began Feb. 1, 2011.

Ugh. Yuck. Blech. Ewww. That’s how I feel after today’s chemo. I often have trouble with word retrieval in the hours following my infusions. My Chemo Buds notice this on Tuesdays — my hard chemo days — as the second infusion, Gemzar, makes me go pale and honestly, a little loopy. I sometimes slur my words and feel like a drunk who never had the pleasure of the cocktail — the chemo cocktail, yes, but not the Whiskey Sour that’s my standard order.

It feels like a bout of the flu coming on — headache, body aches, nausea. But I slept for a couple of hours this afternoon after I got home and it recharged me enough that I could eat a few slices of bread and a couple of peaches along with the antioxidant green tea that is super good for me and that I am drinking by the gallon daily. This little hiatis won’t last long — I need to hit the sack shortly. But first, some silver linings to share with you. A few of my favorites:

1. Support of Friends and Family. I keep waiting for chemo to be fun (I’m the eternal optimist), but so far, it’s disappointed me. I CAN say that it is really reassuring and supportive to have the many loving family and friends in my life who show up on time, drive me to chemo, sit there beside me, drive me home and tuck me into bed. Today, my Chemo Buddy was my bff Elaine Schultz. I enjoy the conversations with each of you and treasure you and your friendship. Not only that, studies PROVE that cancer survivors who are surrounded by a loving network of their peeps have much higher rates of long-term survival. Thank you.

2. Positive Test Results. My tumors have remained stable and/or shrunk every time since February that I’ve had a CT Scan. The latest one taken in the hospital mid-July showed the same results. That’s a LOT to be happy about!

If that isn’t enough, the way I FEEL is! The coughing linked to the tumors in my lungs stopped two months after chemo began; three months later, Don noticed that my stamina had dramatically improved, and honestly, I am feeling terrific. People have been noticing — people who haven’t seen me in two or three months. They’re surprised.

“You look really good,” they say.

I shrug it off and say, “Maybe it’s the tan?”

I mean, that seems like a reasonable explanation.

Nope. They’ve already taken that into account and they are sure I look better, healthier than just two or three months ago. Waaahhoooo!!!!!!!!

3. Amazing Blood Counts! This is a biggie. For the first time in many, many months, my blood counts were SO good today that I don’t have to do those awful, painful Neupogen (white blood cell booster shots) this round! They are worse than chemo, as I’ve said many a time. Very painful side effects in my bones (think rib bones that THROB) that last for 24 hours per shot, and the regimen calls for five days of shots. So, hooray for a small victory that is actually quite BIG!

My doctor attributed it partially to my changeover to a more healthy diet. It’s a slow but sure process, but I’ve already whacked most of the refined white sugar from my diet — replacing it with natural Blue Agave (available at most health food stores and quite good) that does not cause blood insulin levels to spike. I’ve got to keep my glycemic index in check. (For more on the glycemic index and cancer fighting foods, etc., see David Schreiber’s book, Anti-Cancer: A New Way of Life. I can’t recommend it highly enough.)

I’m also eating tons of fresh peaches now in season from our local orchard, raw veggies, whole grains, tomatoes and fresh green beans (raw) from my garden, and EEEK! I ate a mushroom yesterday. For those of you who know me, I’ve had a lifelong hate-relationship with mushrooms. They are one of the only foods I cannot stand to eat.

But.

But they are extremely beneficial cancer fighters — lots and lots of great, healthy properties. So, I’m gonna find a way to get them down. Eww. Ick. My close friend and Theo’s godfather Ken Bagnall tried to lessen the pain of my palate yesterday by covering a raw mushroom in spinach dip.

Still yuck. I nearly hurled. I compare it as being on equal footing with the one time I ate a huge, garlic and butter sauted escargot. That was 20 years ago and I swear, I need to bring it up in a counseling session sometime.

4. Back on Track. It is a victory in and of itself that I was finally able to get through a full round — four sessions — of chemo after all these weeks. I’d been off since the end of June due to low blood counts and the infection that hospitalized me. I am so grateful that I am back on my regimen. That really is a silver lining!

5. The End of Chemo is Near. Nope. I’m not holding out on you. I still don’t know when the end of chemo will come. No one but God knows that. But I do know that getting back on schedule means that I’mmmm bacccckkkk and heading in the right direction, AKA The Finish Line.

Let’s get this chemo thing over and done with ASAP so I can return to my regularly-scheduled life, shall we?

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





And I’m Off and Running! (Chemo, the Day After)

2 02 2011

OK, maybe more like running, collapsing on the bed, sleeping, getting back up, running some more. Running just my natural state of being, so that’s actually good news. It’s my “normal.”

Yesterday’s round of chemo was, in keeping with the racing theme here, a trifecta. Gemzar and Carboplatin were first, followed by that magic elixir, the PARP Inhibitor BSI-201.

Tuesday is my longer day. It was about a 4 1/2 hour infusion. Friday I will get my second dose of the PARP Inhibitor, and that will take only about 1 1/2 hours. Chemo will continue on a Tuesday/Friday regimen, with labs drawn on Mondays, for two weeks. Then I’ll be off a week, repeat.

No one knows for how long I’ll be undergoing chemo. It’s different for everyone. Right now, it looks like it will be about four to six months. But, I will go through body scans at regular intervals to see how effective these medicines are. Hopefully, they will put me into remission very quickly.

I got the call about my lung biopsy results from my oncologist, Dr. Dana Zakalik, about 10:15 yesterday morning. I was scurrying about the house, trying to help my sister Julie get her luggage packed and grabbing my iPad and a blanket for chemo, when the phone rang.

My gut told me that the biopsy results would just confirm what we already suspected — that the breast cancer had spread to my lung. The results were positive; that IS indeed breast cancer in my lung. Looks right now like it’s just my right lung, and that it has affected two of the lobes. And yes, this takes me to a Stage 4.

My next step was to find my sister, who was in the shower, and tell her, “I need you now!”

She shut off the water, still covered in soap lather, wrapped herself in a towel, and threw her arms around me.

I couldn’t speak. My body was vibrating from the wracking sobs.

“Is it what we thought, baby?” she whispered as she rocked me back and forth.

I nodded. We moved to the edge of the bed in the guestroom and sat down. When I was able to compose myself well enough to speak, I said, “You can’t let people forget me when I’m gone. Pleeassseee don’t let people forget me. People always say they’ll never forget you, but then their lives get busy, and then…”

I told her my wish would be that she and our other sister Lisa, my nieces Natalie and Emily, all of our family and friends who wanted to, would find a way to use my name and my journey and battle to further the cause, to move ever closer to the day when this disease will be eradicated. When it would no longer be allowed to run about, pell-mell, wreaking havoc and wrecking lifes. I said, “Something like Susan G. Komen’s sister promised Susan — and then carried out.”

I never have been one to do anything in a small way. As my Dad always told me, “Shoot for the moon, Aim. And even if you don’t reach it, you’ll still be among the stars.”

Julie promised me. She promised me that they would work together to come up with the perfect idea — the one that would help the greatest number of people, in my name. So, I wouldn’t be forgotten, and I could contribute to this cause long after I’m gone.

But that is a conversation that can be tabled for a while. Months. Maybe even years. The PARP Inhibitor could not only melt away the cancer cells that are present, but would put and keep me in remission. And there’s a very good chance that this is exactly what’s going to happen. Maybe, in this best-case scenario, I’ll be around to lead this project, whatever it turns out to be, whenever it’s my turn to carry the torch for this cause.

So, how does yesterday’s news change things? It doesn’t. Not, at least, in terms of my treatment protocol. It did pull me down mentally for a little while, an hour, maybe two. But I picked myself back up and was off to my chemo treatment. Happy. Happy to have the chance to get the drugs that may save my life.

Does it change my prognosis? Probably not in any way that’s worth measuring. This new invader, afterall, announced its intentions from the get-go. Now, I’m voicing mine. I will live. For many, many, many years. I will be by my husband’s side to raise our five-year-old son into adulthood, and beyond. I will lobby for this cause from the depths of my very being, in every way that God asks me to, in every direction He leads me.

I made a new friend in the chemo chair next to me. Her name is Alicia, and like me, she is the mother of a young child. She’s brave and I know she’s going to make it. We’re now also on facebook together, and might I shamelessly add, she’s a new subscriber to my blog. PR for this cause, afterall, is a 24-7 job. Cancer never sleeps.

I feel OK today. A little nauseous, dizzy, fatigued. Not too bad for the day after chemo. I was just going to post a short update and here I am, 892 words later. I’m tired. Back to bed for me.

– Amy Rauch Neilson








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