Off We Go, Into the Wild Blue Yonder

25 01 2012
The Disney Dream Cruise Ship. Photo courtesy of Disney.

All this planning and waiting and waiting and planning and it’s finally HERE! We are packing the last of our bags and then we are off to our very first Disney Cruise, just us three — Don, me, and Theo. It is fitting that the ship’s name is the Disney Dream, because being able to sail aboard it is a dream come true for all of us.

We began planning this get-away back in October. Even then, two months before we found the cancer had spread to my bones and I broke my pelvis, I had the wherewithall to purchase trip insurance that would reimburse us 100 percent should I not be able to board the boat. I’m glad we had that to lean on, because in the days following last week’s radiation, I really wondered if I could make the trip. Last weekend is a fog, and Monday and Tuesday were only slightly better. Last night, just before bed, long after Theo had fallen asleep, Don said to me, “You know, if this trip is too much for you right now, we can cancel. It’s OK honey. We can do it another time.”

Thank God today I woke up feeling sooooooooooo much better than I have in a very long time. I am blessed and very grateful. My sister Julie, who knew I was really struggling yesterday, said she woke up at 4 a.m. and prayed and prayed that I’d be OK. God heard and answered her prayers.

We are off to the Disney Dream, which is the newest in the fleet of Disney Cruise Ships. Our room has a balcony and I envision myself sitting out on it, soaking up some much needed Vitamin D, reading a great book. The second night’s theme is Pirates of the Carribean and Disney lights off a fireworks display over the water. The ship has lots of firsts — including a water roller coaster with a clear tube that shoots out over the water and back. I won’t be doing that one, as I’m sure it’s not safe for my body right now, but I’ll sure enjoy watching Don and Theo!

We are off to Nassau, Bahamas, and Disney’s private island, Castaway Cay. We will learn about the Stingrays and have an opportunity to pet the dolphins. The kids’ club aboard is absolutely amazing — a total wonderland of everything Disney. And Don and I are looking forward to lots of sunning and sitting, repeat.

After 11 months of hard-core IV chemo, including an experimental agent, and now, radiation and oral chemotherapy for the past two months, it’s time for Don, Theo and I to get away from it all and enjoy lots of fun in the sun together. So, that’s what we’ll be doing for the next several days.

I will be taking lots of pictures and I’ll return to blogging when we get back. For now, though, it’s Bon Voyage as we head for sea, sun and sand.

Copyright 2012, Amy Rauch Neilson

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And Radiation Kicks My Butt

21 01 2012

I somehow was under the impression that radiation was a piece of cake compared to chemotherapy. I was wrong.

I did five days of double doses last week to try to destroy the marble-sized lesion on my right hip. That would ease my pain and help me to regain mobility. The double doses helped me to get through the process faster so I can get back on chemo without too much delay.

I AM moving better already, and the Dr said I will see improvements for up to 8 weeks. But I’m also dealing with side effects that I didn’t realize would knock me off my feet. There’s nausea, major loss of appetite (nothing is appealing and I’ve lost 7 pounds in a week), and fatigue.

I haven’t been able to do much of anything today besides rest. And truly, I’m so very frustrated and upset. I am sick and tired of being sick and tired. I want the old me back. I want to be outside, building a snowman with Don and Theo after last night’s fresh, powdery snowfall. I want to go out to dinner tonite to celebrate my brother-in-law’s birthday. I don’t know when, but I do know, the sooner, the better.

Copyright 2012, Amy Rauch Neilson





Status Update: Four Down, One to Go

19 01 2012

After today’s radiation treatment, I’ll have four down, just one to go — tomorrow.

It’s been a rough week. I leave for radiation every morning at 9:30 and by the time I get to the hospital, get set up, get zapped and get home, it’s usually 1 or 2 p.m.

The radiation isn’t so bad. It’s been a rough week for me emotionally. The week has been looonnnnggggg, seemingly dragging on and on with no end in sight, though I realize rationally tomorrow is Friday.

I feel like I’m swinging from the end of the proverbial rope, clinging, trying to hang on. This week just seems to be the icing on the cake of the past six or so weeks since I broke my pelvis in Kohl’s. I’m ready to have my mobility back. I miss walking and I miss driving. I miss being able to do laundry and dishes. Yes, you read that right. Laundry and dishes. It’s amazing what you can yearn for when you can’t do it anymore.

Should I be praying that soon I will be doing laundry and dishes again? I think I’ll try that. Who could turn down such a humble request?

More later…

Amy





Guest Post: The People Who Come and Go in Our Lives

17 01 2012
Jennifer with her two sons. Photo courtesy of Jennifer Nemeth.

Editor’s Note: Last week, as I was preparing for my appointment with orthopedic specialist Dr. Kimberly Les, my friend Jennifer reminded me that she works for a team of orthopedic surgeons at Royal Oak Beaumont, and graciously extended an invitation to help me in any way that she could — as she always does. At first, I told her, “I’ll let you know how the appointment goes. I’ll take notes and fill you in.” Then it hit me. Why give her the information second hand? What could be better than having Jennifer in the room with me — if she was willing — someone who actually works in the field of specialty for which I was seeking an opinion? I was certain that there was a lot she could add, whether it was simply taking in what the doctor was telling me, or asking questions I might not think to ask. So, I reached out. And I was not surprised that Jennifer rearranged her schedule so that she could be there with me, in the exam room, supporting me, listening to Dr. Les’s every word.

Later on that day, I saw that Jennifer had posted this beautiful piece, and I thought it was something that I needed to share with all of you. Jennifer and I met at marching band camp during the summer of 1982, our freshmen year of high school. Life after graduation took us in different directions, but then a few years ago, we reconnected. But enough from me. I’ll let Jennifer tell the rest of the story — along with sharing some insights into ways to help the people you love when they’re faced with a life crisis.

By Jennifer Levinson Nemeth

You know, life is strange. People come into your life, stay awhile, fade away, sometimes to come back, sometimes not. The lessons learned with each person are supposed to be the gift received in life. Each person brings pain and love, tears and laughter…some more one than the other.

I graduated from high school wanting to run as far as could. I didn’t realize then that the “what” or the “who” I was running from were all the wrong people. It’s taken me years to discover who the real person I needed to escape from was, and continues to be.  My journey has been to re-connect with the people I had run from.

These pieces of this puzzle started to come together at my 20th high school reunion in 2006. I was nervous, even worried, about reconnecting and seeing how we had all “turned out”.  That evening, and continuing on to today, I’ve found some truly amazing people who I’m so grateful to know. We don’t see each other often but connect by phone, text, email, facebook and in person as life allows.

Last Tuesday, I was honored when one of those friends reached out and asked if I could come with her to a doctor appointment.  Amy is managing metastatic breast cancer.  After battling Stage I several years ago, the Stage IV return in January 2011 was a shock. I’ve followed her blogs, enjoyed Girls’ Nite Out with her and a few other high school friends, reached out with chocolates and brownies for this amazing chocolate loving warrior, and above all, prayed. Prayed for this battle to be short fought and victorious. Prayed for her pain to disappear.  Prayed for this disease to leave her body for good and never come back. I’ve written about Amy on my blog and facebook page, asking for all to join me in praying for her good health to return.

It’s scary sometimes to know what to say, how to help, what words will soothe and which words will comfort Amy.  I want to help and I’m learning sometimes it’s just knowing a friend is thinking of you that is the most comfort.  New and/or changing disease symptoms required last Tuesday’s specialist visit and when Amy texted me, I knew there was no other place to be.  My boss cleared my extended lunch and I hustled to prepare my surgeon’s morning cases so I could skidaddle at noon, over to Beaumont, to see and be with my friend.

Amy has an amazing presence about her. Calm, when I knew my own insides were rattling, Amy, her husband, sister, cousin and I sat and waited to be called back. We talked about my broken foot, my oldest son’s wrestling skills (eh hem) and we laughed. We were Amy’s posse that day and I was glad to be part of the team.

The nurse called us back and we settled into a big room, patiently waiting for the doctor’s arrival.  The knock on the door came and in she entered, calm and gently introducing herself to each of us.  Dr. Kimberly Les of Beaumont Royal Oak sat in front of Amy and asked for her history.  Listening to Amy describe the last several years, diagnosis, treatment, disease location, chemo treatments, etc., was amazing.  Her clarity and understanding of this disease and the available treatments is second to none.  She is certainly not your average patient.

Somewhere inside I was worried, nervous, even scared about what this doctor might offer or suggest. Dr. Les was terrific. So kind. So clear. So pleasant to talk with.  She offered lots of what I think was great news. Her explanations made sense and were reassuring to me and I hope were just as reassuring to Amy and her family.  We left with a plan, as Amy and her team always devise.

Amy continued on to her next appointment at Beaumont and I said my goodbyes for the day and returned to work.  There was a lot of information shared and it was a lot to hear.  I thought about it throughtout the rest of my day as I worked with and talked with patients.  Amy’s medical team is outstanding. Her personal team of soldiers, of which I am honored to be a part, are outstanding. I can’t help but believe Amy will, one day, stand strong and victorious on top of this damned disease and crush her heel into Cancer.

Thanks for wanting me to be with you last Tuesday, Amy.  I’m here anytime you need anything.

Copyright 2012, Jennifer Levinson Nemeth





First Treatment Today

16 01 2012

At Beaumont Radiation. Consulted with docs. I will be getting first radiation treatment today.
Amy





Status Update: Radiation

16 01 2012

On our way to my first radiation appointment at 9 a.m. Scared of the unknown. Never have had radiation before. Will update you later.

Amy





Do You Believe In Magic?

13 01 2012
A sprinkling of pixie dust and we’re on our way! Photo by Amy Rauch Neilson.

First of all, let’s clear something up right from the get-go. Yes, that is my Disney hat. No, I didn’t buy it when I was a kid, but two years ago, when I was a full-grown adult. Yes, I wore it around the park. For days. With my name embroidered on the back. Yes, my family was embarrassed, but as in most things I do, they got over it. The ears were OK, mind you. It’s the long, trailing princess veil that might have been a little over the top.

Whew! So, now that we’ve gotten that out of the way…what’s a pair of Disney mouse ears got to do with it?

A lot.

Last September, I was on the phone with my friend Matt. We go way back to our mid-teens, having met first as employees at our very first job — a Baskin-Robbins Ice Cream store where I came home nightly, covered to my elbows in multiple flavors of ice cream (those tubs are so much deeper than they look). Then, we reconnected two years later when, unbeknownst to either of us, we both hired in at the same Bill Knapp’s restaurant — he as a cook, me as a server who then came home nightly covered in ketchup. Now, Matt’s a successful attorney with a great family and as for me, well, you know my story.

Back to last September. We’re chatting and he says, “So, you’ve made plans to get away this winter with your family, I hope? Get some sunshine. Take a break from all that you’ve been through this year?”

Sure, I say. Matter of fact, in late October, I tell him, we’re going to Indianapolis.

“Great,” Matt said. “What are you going to do there?”

“Well, I’ve got a doctor’s appointment with a specialist on Friday, then we’ll spend the weekend with some close friends.”

“Hold on there,” Matt said. “When I said ‘get away,’ I meant without doctors. No appointments, no hospitals.”

“Oh,” I said, like this was a new concept — because it was.

After we got off the phone, I began to really absorb what Matt had said. He was right. We needed to get away, plan something special for just the three of us, a warm, sunny destination free of doctors’ visits and chemotherapy treatments, replaced by sandcastle building contests and the gentle feel of an ocean breeze.

So, I began looking around on the various travel sites. I came across a really great deal on a four day, three-night Disney Cruise. I’d heard these cruises are fabulous, but also quite pricey. I had to blink twice when I saw the price on this one. It was doable.

I talked it over with Don that night and we decided that we’d forego birthday and Christmas presents to each other in lieu of the cruise (we both have fall birthdays) — although of course, Santa would still visit Theo. Then, even better luck. I talked to my friend Julie Sturgeon, who is a travel agent, and she was able to find the same cabin on the same cruise for a few hundred dollars less. Now it was really tempting.

So, I booked it. And, via the Internet, I began to show Theo pictures of the ship and the cabins and all of the wonderful things we’d be able to do as a family while on board. He was so excited that he asked me to please print off a picture of the ship. I did, and he’s been carrying it in his pocket ever since. Every once and a while, he’d pull it out when we were with family or friends and say, “Look! This is the ship we’re going on!” He’s also been crossing the days off on the calendar.

Then early December came, and the incident at Kohl’s, which later proved to be a two-part break in my pelvic bone. That was followed by the small break in my right shoulder bone on Christmas Day, and an overall sense that I was just way too fragile to travel. I felt like a delicate glass vase that could too easily fracture into a million irreparable pieces. My heart was broken, as was Don’s, but our biggest concern was for Theo. He’s been through a lot during the past year since my diagnosis; all of us have. We are in need of some fun-filled, family time together.

Just a few days ago, a big envelope of information came in the mail, plastered with photos of Mickey Mouse. It was lying on the counter when Theo got home from school. “What’s that?” Theo asked Don. “Oh, nothing. Just some bills, honey,” Don said as he scurried to cover up the travel documents with a newspaper.

Then came yesterday. Earlier this week, my oncologist had called to say she had concerns over the Xrays I’d had taken last Friday, and that she felt I should consult with an orthopedic surgeon before our next appointment. I went to my appointment, flanked by my sister, Lisa; husband, Don; cousin, Lori; and bff Jennifer Levinson Nemeth.

I could see the tension in Don’s face. In everyone’s faces. There was so much on the line here. Way beyond a trip on a Disney boat. How many lesions, how big, and would they require surgery? I’d become less and less ambulatory in the past month, and had started using a cane to support my right leg just days earlier.

Orthopedic Surgeon Dr. Kimberly Les walked into the exam room, bringing with her an amazing air of confidence and peace. Right off the bat, she began the conversation, “You don’t need surgery,” she said, holding my most recent Xrays in her hands. “In fact, you are already healing quite nicely.”

I knew that something had been working, because in the past couple of weeks, much of my back pain had disappeared. The only serious, debilitating pain that I still felt was in my right leg.

Dr. Les then pulled out a plastic replica of the human pelvis and femur bone. Though my pelvis had cracked in two places, she said, pointing to both areas, it was already showing signs of healing. And not because of the chemotherapy, she said. It was way too early for that. Rather, it was because I am young, I’d always taken good care of myself, and my pelvic bone reflected that as it began to heal in the month following the break. Oftentimes, it can take up to six months for a pelvic bone to even show signs of healing, and it can take up to a year for it to fully heal. In older people, the healing process can take up to two years.

Surgery isn’t a good option with a pelvic break. It’s very difficult to get to the pelvis, and hard to piece it back together even if you do. There’s also no position you can assume that will take pressure off of the pelvis — not sitting, standing, lying down, back, front — nothing. The fact that many of the body’s red blood cells are manufactured in that area makes a surgical invasion even less beneficial. And, my pelvis is making progress on its own, so it shouldn’t be long before it’s in a pretty good stage of healing.

On to my femur. Ever since the Xrays showed a lesion in my right femur, Don and I have been very concerned that my right leg could snap at any time. Not so, Dr. Les assured us. In fact, she did not hold the entire femur bone replica in her hand, but just the very top. Most of my femur bone was very healthy, she said. But there is a marble-sized tumor near the top.

“If that’s what’s causing you pain when you walk, you’d feel pain when I press right here, she said, pressing on an area near my right hip. “Ouch!” I said.

So, the pain I’m experiencing, that keeps me up at night and makes it difficult for me to walk — the source of that pain seems to be originating from that area of my femur. Again, surgery is not the answer. But radiation could be. We talked about this at length and decided that a short-term bout of radiation to the Greater Trochanter (upper part of the leg, below the ball socket) just might get rid of that marble-sized lesion — and give me some relief. I may be walking without assistance some time in the very near future!

Finally, my cousin Lori had the nerve to ask THE question, the white elephant that had been lingering in the room. “They have a Disney Cruise planned in two weeks. Can they go?”

“Absolutely,” Dr. Les said without hesitation. “In fact, Amy is not as fragile as you might think. It would take a good fall for her to break that femur.”

Don and I couldn’t believe it! Such excitement! Not only was I doing well, we were going to be able to go on our Disney cruise after all!

We next met across the hall with my oncologist. She agreed with Dr. Les’s findings and we made an appointment for me to see a radiologist this coming Monday. We are hoping that I can complete my round of radiation before we leave on our cruise. And though radiation doesn’t often give immediate relief, I will start to feel some improvement within a couple of weeks.

My oncologist just continued the parade of sunshine and good news as she examined me post second round of Xeloda and gave me my second Xgeva shot. Though I won’t have another scan to gauge progress until I’ve completed one or two more rounds of Xeloda, everything is looking good. I do not have red, blistered hands or feet — the most common side-effect of Xeloda. My blood counts haven’t looked this healthy in over a year. And the fact that my body is mostly pain free, with the exception of my right hip area, is a sign that Xeloda is forcing the cancer to retreat.

A day that had the potential to go so very wrong in so many ways had gone so very right. So many of us have stopped believing in magic and pixie dust. Perhaps it’s time we revisit those notions.

Copyright 2012, Amy Rauch Neilson








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