Me with my favorite little guy, Theo, at the Amy Rauch Neilson Bowling Benefit, March 2010. Photo by Kristi Rugh Kahl.
My doctors have told me that even though I feel worse, I’m actually in a better place than when I was diagnosed almost exactly a year ago. Then, breast cancer had invaded my breast, the lymph nodes leading from my breast, and both my lungs.
After nearly a year of heavy doses of chemotherapy, the breast tumor is nearly gone, the lymph nodes are clear, and the nodules in my lungs have shrunk dramatically. That should be — and is indeed — cause for celebration.
Yet, this is the worst I’ve felt since my diagnosis. I was more mobile than I am currently back when I had my six-day hospital stay, due to an infection, in July 2010. I’ve been able to ride out this diagnosis so far and, around chemo days, live lots of happy, very active Happy Squares. Until now.
You know those times when you are so very sick and miserable that you think you’re going to die — but then you know you really aren’t, because it’s just the flu, or a terrible cold or some other run-of-the-mill virus that normally healthy people can combat? Well, that’s the way I’ve been feeling — sometimes like I’m so sick I’m going to die.
And therein lies the difference. Because of the serious nature of my diagnosis, I begin to wonder if I am going to die. It is terrifying to be in a Kohl’s Department Store when your right leg gives out and just stops working. It is terrifying to learn that behind that pain and malfunction, there’s cancer in your bones. And it’s terrifying when you learn, in the days following a PET Scan, that the cancer that you have so successfully forced out of your soft tissue has relocated to your skeleton.
My doctors tell me that though I may feel this way, it’s not an accurate reflection of where I’m at. There are more tools to fight breast cancer that has spread to the bones than breast cancer that’s in the soft tissue — and breast cancer in the soft tissue is far more life-threatening. For example, those tumors in my lungs? Had they grown instead of shrunk, had they not responded so beautifully to the chemo, they could have literally suffocated me. So, though I felt really good during those months — outside of my treatment days, of course — inside, the battle was raging.
Now, I’ve got the opposite predicament. While it’s no picnic having cancer in your bones, it doesn’t present the danger that it would in my soft tissues. Yet it feels horrible. The worst pain has been in my shoulder blades, where, if I lay in one position for too long, it feels like someone is stabbing me in the back with a butcher knife when I try to move. I’ve never been stabbed in the back with a butcher knife, thank God, but that, that has to be how it must feel. Excruciating. Sharp. Unrelenting. And then I am stuck in that position — let’s say, my bed — so I have to call out for someone to come and help me.
Bottom line is that if I had to base my prognosis on how I feel, I’d be forced to admit that it feels like I’m going the wrong way, downhill. I’ve just been so very, very afraid. I’m not only in pain, but I do not have much stamina. I cannot get through a Wal-Mart without using a scooter anymore and in fact, since Christmas Day, I cannot get my own groceries — scooter or not — because my bones are so frail that it has become dangerous for me to lift a bag of groceries. I broke my right arm near my shoulder on Christmas morning. All I was doing was reaching under our tree to move one package aside to get to another. Neither package weighed more than three or four pounds, five tops. Yes, the angle was probably awkward, but I had no idea that I could so easily snap a bone.
I spent both the day before New Year’s Eve and New Year’s Eve in the ER. First there was the call from my oncologist, who had taken X-rays of my arm earlier in the week. They showed a fracture and someone from orthopedics needed to look at the films and examine me. Then, New Year’s Eve night, for no apparent reason, my temperature was on the rise. Finally, when it reached 102, we decided it was time for yet another trip to the ER. Fevers are very dangerous in chemo patients. My right arm has a fracture near the shoulder — which has been weakened by a cancerous lesion there — but it’s not all the way through the bone, so Orthopedics opted not to put a pin in it. That would have meant surgery — something we want to avoid while I’m going through chemo, of course. My arm should heal on its own as the Xgeva shots kick in — I get my second one on Jan. 10. Those are bone strengthening shots and the hope is that while the Xeloda kills the cancer in my bones, the Xgeva strengthens them. As for the fever, it came down while I was in the ER and because my blood counts are normal — yay! — they sent me home on an oral antibiotic. Whew! That was close. I was sure I was going to be admitted during one of those two trips and was so very happy to be released to go home to my own bed, my own family.
The upshot of the ER was that while I was there, they worked on different strategies for managing my pain. Those seem to be helping, though I’m certainly not the rabbit I so recently was. My doctor says to hang in; I’ll be that rabbit again one day very soon. I sure hope so. Losing my mobility, my ability to drive, and do the things of a normal day — get groceries, run to the post office, care for Theo or even myself — it’s very difficult.
This morning came heartbreak. My cousin Christine came over to pick me and Theo up for the day and take me to her house so Theo could play with his cousins and I could rest. Theo lately has been refusing to get dressed on his own, wanting instead for me to dress him. When Christine came upstairs to check on his progress and saw he wasn’t getting dressed, she said, “You are six years old. You are old enough to dress yourself. Get dressed.” That’s when he said, “My Mom is a lot older than that and she can’t dress herself.”
I burst into tears and Theo felt bad immediately and kept saying, “Mommy? Mommy? Please stop crying.” I knew he hadn’t done it out of spite. It’s just the view of the world he has right now through his six-year-old eyes.
But that struck the chord of my fear — that I’m losing my abilities and therefore, slowly losing this battle. That I will one day end up being The Girl With The Pink Ribbon who fought so very hard, but didn’t win the war. And I don’t want to be remembered that way — not by anyone, and certainly not by Theo. That’s when this comment made its way into my email box. It’s from my long-time friend and former professor and Director of the Oakland University Honor’s College, Dr. Brian Murphy, and his wife, Toni.
“Toni wanted me to relay her thought about your comment about not wanting to be the girl who ‘lost,'” he wrote. “Every day, she rightly says, you win; you really do. YOU WIN. We realize–how could we not?–you write so well about it–how terribly, terribly hard this struggle is . . . but, of course, you are doing this for you–not us. We love and support you. Keep on winning. Love from both of us–though the thought is Toni’s.” — Brian
Brian regularly drives down from Rochester Hills and picks me up to take me to lunch or dinner. He and Toni were the first ones to ever introduce me to Shakespeare through a college field trip to the festival in Stratford, Ontario. They are the reason why Don and I are married. They are two brilliant, amazing people who both have hearts of gold and stories to share that mesmerize me. To honor them, I’m going to begin every day thinking about how I’ve WON, not what I’ve lost or whether or not I’m losing. Every day, I WIN. Every day from this day forward, I will be The Girl With the Pink Ribbon who WINS!
Copyright 2012, Amy Rauch Neilson