- 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?
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