Status Update: Another Hurdle to Clear

 by Amy, as told to Diane Baldwin:

I know you’ve all been waiting for me to post about the results of the PET scan. The lung nodes are considerably smaller and the breast tumor is almost gone — so small in fact, it is hard to see. All my lymph nodes are clear as well, which was unexpected and surprised my doctors. I’ve been waiting and hoping for this news for almost a year now. I thought I’d be in remission once this news arrived.  I thought I’d throw a party and celebrate living life to the fullest once again!!

However, the pain I’ve been feeling has greatly accelerated and the PET scan showed why. The cancer has recently spread throughout my body, in my bones: collar bone, vertebrae, skull, legs. The lesions are small, but too numerous to count. The doctors tell me that this kind of cancer is very treatable, which is good news. I’ve wanted to write to tell you about this news, but I couldn’t because I’m shocked and very, very sad. I just don’t understand why this is happening. Why to me? Why now? Why does my stage IV cancer have to spread yet again? Why does it now have to be so painful and so limiting? How long can I stand living this way?? When will it end?

You should know that I’ve spent the last six days at home, in my bed, sleeping and crying. Trying to get through the pain. I’m not used to pain, so this is a new and horrifying experience. I can’t shower, walk or dress without help or without pain. I get stuck in bed and can’t move. I can’t take care of Theo. And I’ve somehow managed to break my arm, without any great fall. The doctors won’t cast my arm, so I have a sling, and the pain that goes with a broken bone, on top of everything else. I am taking three heavy-duty pain medications, all of which somewhat relieve the pain, but make me nauseous and sleepy. I feel depressed and many times a day a spell of despair overwhelms me. During those times, I feel that this is the start of the end for me and all I can do is sob miserably, lamenting all that I would miss on earth and in my precious life. I don’t want to be the girl you all knew who tried to fight cancer and lost.

Those of you who know me know how abysmal isolation is for me. I’m not a “home-body”. I do not like being alone for longer than a few hours, and then it’s only bearable if I have a deadline or a project I need to finish. I like going out in the world. I crave socializing. I love running errands and living a crazy, busy, exciting life with my friends and family. I was managing all of that with stage IV cancer, prior to this pain, when my leg gave out at Kohl’s just before Christmas. It’s just not fair.

My doctors say that it should take two to three rounds of my new oral chemo, with the bone agent added in, for me to feel relief and hopefully reversal of these new symptoms. I just started round two, so this means possibly five more weeks of this hellish pain and inconvenience. Five weeks put me at February 4. That’s not so long, right?

I’m still on my diet and feeling certain that’s a step in the right direction. I’m trying guided imagery, meditation, massage and Reiki to alleviate the pain. I’m considering acupuncture, too. But, please, please, dear readers, continue praying for me. I need your power, your belief in my healing to help me right now. Things are bleak, but they are not over. I’m not giving up. I can see past this pain. I just need time.

Shine a Light for All to See

Our Christmas Tree -- all decked out!

We have a family tradition that I absolutely love of cutting down our own Christmas tree every year. There’s a beautiful Christmas Tree farm just a few miles from our house, family run, word-of-mouth advertising only, that we found the year Theo was born.

That year, he was only four months old and I carried him in a Snugli under my down coat. This year, he was big enough to help hold the tree as Don sawed its base. Together, the two of them dragged it out from amongst the hundreds of other candidates, and Don secured it in the back of his pick-up truck.

Some years, it’s been so cold that we literally step out of the truck, run to the edge of the lot, do a quick left-to-right scan, and point to one. Don cuts it down, and we are outta there! This year, we were a bit smarter and got lucky. We decided to go the weekend after Thanksgiving — when temperatures were hovering near the 60 degree mark. That meant we could take our time, stroll through the various types of pines, consider height, width, type of needle.

And, of course, we had to check the tree’s trunk to be sure it was straight. When I was growing up and we went in search of a tree as a family, my Mom, Dad, two sisters and I would split up and search and search for the perfect tree — then call out to the others when we found it, jumping up and down and screaming, “This is the one! This is the one!”

Dad was notorious for ignoring the perfection of the tree’s shape or the fullness of the branches. Instead, he’d bend down, tip his head and look at — of all things! — the TRUNK of the tree. If it wasn’t straight, it was a no-go. ”Can’t put a tree properly into the stand with a trunk like that,” he’d say. And we’d all be off in search once again.

This year’s winner was a White Pine. The needles are oh-so-soft and the scent of Christmas filled the house as soon as Don dragged it through our front door. This is really the first year that Theo was able to hang bulbs all by himself. We have a collection of Winnie the Pooh ornaments given to us over the years by our friends Doris and Jim Hildebrand, and that’s what caught Theo’s eye. His contribution was to carefully hang each and every one.

The tree is gorgeous, and with its wide girth, reminds me of a jolly Santa Claus. I love that when we plug in the lights, they shine through our windows and out into the night, where our neighbors across the lake can see and enjoy them. Christmas is about so many things, and right there at the top of the list is sharing its light for all to see.

What am I thinking about as this Christmas quickly approaches? Well, I am anxiously awaiting the joy and delight in Theo’s eyes as he opens his presents on Christmas morning. I am also looking forward to our annual Christmas Eve tradition with my sister, Lisa, and her family. We have a potluck at her house, then continue on to the most beautiful church service of the year — Christmas carols sung by candlelight. And, we are spending Christmas Day as we’ve never spent it before — with friends instead of family. Theo’s best friend, Kai, and his family have invited us over to share the day with them and to enjoy their traditions. We will be experiencing Christmas Japanese, German and American style! And, Kai’s Dad, Marc, will don full garb as a German Santa Claus. We are filled with anticipation at the wonders the day will bring.

There’s also a certain sadness that wells up inside me every now and again. Though I miss my parents every single day of the year, there’s something about Christmas that makes me miss them just a little bit more than on other days.

I also miss the blissful innocence of Christmas just one year ago. Though I was at that time just weeks away from my Stage 4 breast cancer diagnosis, I had no idea and we celebrated the holiday season with the joy and relief that our lives had finally settled into a peaceful, happy routine. I was nearing my five-year all-clear breast cancer marker following my Stage 1 diagnosis and treatment in 2006. Don’s business was doing very well, as was my free-lance writing and editing business. Theo had settled happily into his Kindergarten routine. Just days before Christmas, Don and I had popped the cork on a bottle of champagne, poured a couple of glasses and clinked them together to celebrate how far we’d come, the joy we were experiencing as a family after some tough years.

That peace was rocked by my January 12, 2011 diagnosis. And the word that the cancer had spread to my vertebrae just two weeks ago really shook me and my family to the core.

What does it all mean? Of that, I’m unsure, although I do believe God has a plan for me and will continue to use me and my diagnosis to help fulfill that plan. God never promised us that the road would be easy. He only promised that He would be there beside us, every step of the way.

Whatever road you’re traveling right now — be it bumpy or silky smooth — the wish and prayer from my family to yours is that you feel His presence, know without a doubt that He is right there beside you, and that you allow His light to shine through you everywhere you go. As my childhood pastor, Reverend Bill Ritter at Nardin Park United Methodist Church used to say, don’t hide your light under a bushel basket, but take it to the mountain top so that it may shine for all to see.

Merry Christmas to you and yours. May your holidays be merry and your New Year be bright.

Copyright 2011, Amy Rauch Neilson

“Never Quit.”

Mary Cox, a friend of my niece Taylor Blake, shared this quote from Lance Armstrong several days ago and, when I find myself in a difficult moment, whether it be from physical or psychological pain — or both — I hit the playback button in my mind and recall these words from Lance:

“You know, once I was thinking of quitting when I was diagnosed with brain, lung and testicular cancer all at the same time. But with the love and support of my friends and family, I got back on the bike and won the Tour de France five times in a row…. NEVER QUIT!! ”

To say it’s been a tough week would be an understatement. It’s been downright excruciating on so many levels, and terror-filled. I still cannot believe the cancer has moved into my back — and rail at the sheer pain.

Yes, I can walk a short distance. But anything farther than car door to the doorway of my destination requires a wheelchair. This is new territory for me and it’s given me a new perspective. God does indeed have a sense of humor.

Friday afternoon, my niece Natalie wheeled me through Kohl’s, then left me in Men’s Pajamas as she wandered off to look at belts and dress socks. I could only stand to stare at the rack of plaid bottoms for so long before I called out to her, and she came to retrieve me from the midst of the flannel forest.

The pain is tough and I’m doing my best to control it, to find that balance between totally out of it and able to function with my family. I’d rather have to grin and bear a little pain than be in an ongoing drugged state.

I take my last dose of steroids tomorrow and they do seem to be helping me to make progress. My medical team said most of my short-term improvement would likely come from the steroids and their ability to ease the inflammation. My back seems slightly improved and my lower lip and chin, which had both been numb, are starting to itch, which I think is a sign the feeling is returning.

It has been a tough week, but it’s behind me now and I’m looking ahead. Lance’s quote inspires me, and, in addition, some very exciting news and opportunities had come my way in the days leading up to the hospital debacle.

I have so much to share in that regard — really exciting stuff. So, that’s the plan for this week. Keep on resting and recovering, but also moving in the direction of my goals and dreams.

Thank you for your continued prayers. I need every single one of them.

Thank you also for storming heaven on my behalf. I know God expects nothing less from me and my friends and family. Grin. And like Lance, I am most blessed in that area of my life.

Copyright 2011, Amy Rauch Neilson

The Plan

This says it all.

I opened up my email this morning to these beautiful words from my bff Marnie Leonard Fender. We’ve been pals since middle school:

My heart is broken to hear the test results.  You are so special to all that know and love you and I wish that this wasn’t the fight that it is.  I couldn’t respond to your one line blog… the one line said so much about how you must be feeling.  We are normally graced with many words of inspiration – and the lack of prose from my dear friend, the most talented of writers, hit like a freight train.  The impact of just a few words….the implication of your sorrow.  Please remember the impact of other few words….you are loved…God is with you…hope returns.  I am hopeful about your talks with the doctors. 

Monday and Tuesday this week were like night and day — and I can’t help but think, no, believe, that the power of prayer was responsible. First there was the sudden collapse of my right leg in a Kohl’s Department store. “Was it pain that kept you from walking?” the doctors asked me at the ER.

No, it wasn’t the pain, I assured them. I can walk through pain. My leg just simply gave out, couldn’t bear any weight, wouldn’t work. It’s like nothing I’ve ever experienced before.

Don rushed me to the University of Michigan ER as my instructions from my medical team at Beaumont were: Get to the closest ER. Doesn’t matter which one. Just get there.

Don wheeled me into the ER and there I was, sitting in this rolling chair, wearing a mask for protection, tears streaming down my face at such a high rate that the top of the mask was soaked and clinging to my cheeks. I was immediately sent for a veinous ultrasound (this was a first for me), which checks for blood clots. Thank God, the test result was a negative.

Next, I was sent for a complete MRI of my back, from my neck all the way down through my tailbone. I laid in the MRI tube for a full hour. When they finally pulled me back out, the techs asked how I was able to remain so still. Apparently, a lot of people can’t and have to go under anesthesia or simply can’t complete the test.

I told them my strategy. I pretended I was an astronaut in a rocket heading into space, and that I had been well-trained for the mission. The headphones meant to protect me from the loud noises of the MRI machine were, in fact, my communication to and from Ground Control. I imagined how, once the rocketship burst through the atmosphere and I got the green light, I’d be floating around the cabin of the shuttle, gazing at the beauty of earth from space, mingling with my astronaut companions, trying to decide which freeze-dried meal would be dinner. Beef jerky? Chicken? Yes, I know; my strategy is way out there, but it worked.

And so did the tests. My ability to lie that still gave the doctors the best possible images to work with. They returned to my room at the ER within 45 minutes of the test — a very quick response. They closed the door. Closing the door always means something serious is up. The doctor began by explaining that there was no disc compression, no pinched nerves. That was the good news.

The bad news was that there were multiple lesions in my back, near my spinal cord. But that was as far as he wanted to go. The ER docs simply recognized the complicated nature of my diagnosis and that truly, it was my oncology team that needed to look at the films and interpret them. I really respected them for that.

On the ride home, I sobbed. Wracking sobs. I looked at all of the houses that dotted the landscape, brilliantly lit in the dark of the night with strings of Christmas lights, nativity sets on the lawn. I thought this new development meant I was a goner. I felt quite certain of that in those moments and sobbed at the thought that my life was coming down to one last Christmas.

Not so, my oncology team told me yesterday, after reviewing the films and tests from the University of Michigan. They had studied those films earlier in the day, while I was going through a PET Scan. There was very good news to be had. VERY GOOD NEWS.

NONE of the lesions were touching my spinal cord. My spinal cord was completely clear. Everyone breathed a sigh of relief, and I could see it all over my oncologist’s face. This was the piece of information that would change everything. Yes, there is cancer in my back, and that’s a new development, but it’s in my vertebrae and very treatable. Right then and there in the office, I was given a shot of a second chemo agent called Xgeva (pronounced X-Geeva), to go with my Xeloda (Zeloda).

The combination of these two chemo agents has proven to be very successful in treating breast cancer that has mestastasized to the bones. And, as I began the Xeloda a week ago, my oncologist noted, we were already ahead of the game. We should see some improvement within three to four weeks on this new regimen.

That’s a long time to be as debilitated as I have been in the past few weeks. And the last two days, I’ve spent most of my time in a wheelchair, unable to walk for any length of time on my own. That’s due to the inflammation in my back. So, my doctor is putting me on a round of steroids and I should get relief within a few days. I should be back, up and around and WALKING again very soon.

So, there was indeed a silver lining to my test results. Would I have loved to hear that there was not any cancer in my back? Of course. But my oncologist was steady, confident and calm as she walked me through my options and told me that this is indeed treatable and that we will get it under control. Maybe we’ll even get rid of it. She still maintains that I have years ahead of me. This is not my last Christmas.

Copyright 2011, Amy Rauch Neilson

Update

We are just leaving hospital after a day of tests. Met with my oncologist and we have a plan. A good plan. A hopeful plan. Details to come.
Thank you for your prayers. They are being answered. Please keep praying.
Amy

CT Results Back

There are lesions on my spine.

Status Update: Between Tests

So this is how it happened. I was at Kohl’s today ever so briefly to pick up a couple of gifts to finish off my list when suddenly, my right leg quit on me. I could not put any weight on it whatsoever. It hurt, but it wasn’t the pain that was getting in my way. It was my useless appendage. I slowly made my way out of Kohl’s, sliding my right leg behind me. Thank God I had the wisdom to park in the first handicapped spot.

I called my team at Beaumont and they told me the situation was potentially very serious and that I needed to get to the closest ER ASAP. I called Don, who picked me up and we were on our way to U of M.

That’s where we are now. The docs did a thorough neurologic exam, which I passed with flying colors. They sent me for a veinous ultrasound to look for blood clots in my leg, but thank God, all was fine on that test. They are just about to take me for an MRI of my spine and we are praying that the result is a pinched nerve, which would be the lesser of two evils. The other possibility that they are looking for is a metastases to my spine. Let’s pray its not that.

I’m on my way now — rolling down the hallway. We will have results soon and will keep you posted.

Amy

Emergency Room

On my way. Very sudden turn of events. Cannot use right leg. Will update later. Prayers please.
Amy

“You Are Not Defined By Your Cancer.”

My Birthday gifts from Don and Theo. Photo by Amy Rauch Neilson.

I thought I had it all figured out. I’d seen a beautiful breast cancer bracelet made by The Brighton Company at Leo’s Jewelry in downtown Wayne in mid-October. The Brighton Company designs a different bracelet each year for October, Breast Cancer Awareness Month. The company manufactures a certain number, distributes them to various jewelry stores, and then when they’re gone, they’re gone.

I had stopped in on an October afternoon to pick one up for my niece, a carrier of the BRCA 1 gene, who had just courageously undergone a double-mastectomy at the age of 27. As the salesperson was placing my purchase into a bag, she told me that her store only had four more left.

Only four more left! I thought to myself. “Do you think you could put one on hold for my husband?” I asked. “My birthday is coming up in a few weeks. Maybe I’ll suggest to him that I’d really like one of these bracelets.” She agreed to put one on hold for a few days.

The next day, we drove past the jewelry store and I said to Don, “You know…they have this beautiful breast cancer bracelet there, made by Brighton jewelry, that I’d love to have. I might have put one on hold with your name on it.”

He rolled his eyes, ever aware of my compulsion to micro-manage, and said, “We’ll see.” And that was the last we spoke of it. Until.

Until my birthday. It fell on a Tuesday this year, and it’s tradition in our family that we take the day off and celebrate with each other. I took Theo to school and when I got back, my birthday presents from Don were on the kitchen island.

One was the new Stephen King book I’d been wanting. The other was a pretty little black gift bag with Leo’s Jewelry on it. Don saw me staring at it and said, “It’s not what you think it is.”

I gave him a curious look and began to open it. Indeed, it was not what I expected. It was so much better!

Inside was a silver pendant made to look like an open book. Beautiful. Even more beautiful were the words Don spoke as I was gazing at it. “I didn’t get you the bracelet because you are so much more than the cancer you’re fighting,” he said. “And I refuse to allow you to be defined by your cancer.

“I know it’s a part of your life, of our lives. But it does not define you. You are a writer, a reader, a wife, a mother, a friend, a sister. You are so much more than your cancer. That’s why I didn’t buy the bracelet.”

I looked at the new pendant, listened to Don’s words, and any desire I’d had for that bracelet melted away.

Later that afternoon, we picked Theo up from school and took him to see An Arthur Christmas in 3D. Then we picked up chicken from Boston Market and stopped by Grandma’s. When we got home, Theo had me open his card and present for me. His gift was also in a Leo’s Jewelry bag, but it wasn’t the bracelet. It was a new charm for my Pandora bracelet. The cutest little sterling silver frog you’ve ever seen.

“Do you like it, Mommy?’ Theo asked.

“Yes, I sure do, honey. I love it!”

“Great. Can I have it back now?”

We’re still working on the concept that giving a gift to someone means they get to keep it…

Copyright 2011, Amy Rauch Neilson

Status Update: A Good, Yet Mixed Bag

Just a quick update on today’s doctors appointments as many of you have commented via blog or e-mail and are wondering how it went.

The big news is that I did indeed get the nod to transfer from my current IV protocol to an oral chemotherapy, effective immediately. Don is out filling the prescription and I start on the new drug, Xeloda, tomorrow.

Of concern is the pain in my back that extends from my shoulders to my tailbone. It’s been getting worse every day and is beginning to seriously impact my mobility. My doctor’s best guess, based on my symptoms and my growing dependence on Motrin and Vicodin to keep me going is that I have breast cancer metasteses to my bones. The doc ordered a body scan to see what is really going on, as well as a CT of my neck and head to find the source of the numbness in my chin. She believes that is nerve-related and is not at all thinking brain metasteses, thank God.

The good news is that bone metasteses can be successfully treated and kept at bay for a very long time, i.e. 15-20 years. The pain can be managed and if the new drugs do their job, any bone metasteses should disappear. The greater concern seems to be the lung involvement and the hope is that Xeloda will knock out those tumors as well. The goal, and as I understand it, the very real possibility is still remission.

All in all, it was a very upbeat conversation and Don and I both feel a great deal of relief and confidence that everything is going to be OK, that I am going to be OK for a very long time to come. As my cousin Lori said on the way out: “Aimers, this is the first time we’ve left here and you weren’t crying.”

That, indeed, says it all, doesn’t it?

Copyright 2011, Amy Rauch Neilson