A Post from Rachel & Carla

Hello, this post is from Rachel & Carla, Ceil’s daughters. We’re sorry to have to tell the readers of this blog that our mom passed away at the end of January 3rd.

As she mentioned in her last post, Ceil was able to spend the holiday season with family and friends, and although her energy and appetite were waning, she thoroughly enjoyed visiting and being visited by loved ones. On New Year’s Eve we noticed that her energy and mobility were severely decreased. On New Year’s day she received visits and phone calls from friends and family, but didn’t have the energy to leave her bed. It became apparent that she was very dehydrated. We kept her as hydrated as possible, and on Friday we brought her in to see her doctors, who recommended that she be admitted to the hospital for more comprehensive rehydration and observation.

Our hope and expectation was that they would rehydrate her, perhaps give her a blood transfusion, and she would regain her energy and vitality and then return home to resume her fight against the disease. But on Saturday, despite excellent and thorough treatment, it was clear that something was not right. The doctors at NYU Hospital quickly took her to the ICU and determined that the melanoma had aggressively spread. It was very sudden and unexpected, and her liver had failed. The doctors were very patient and helpful, but they made it clear that the melanoma had won.

We had seen what the disease was doing to her, especially in the past couple months, but I think we all really believed, as many of you did, that she could beat this thing through sheer force of will. It was an extremely difficult day, but she was comfortable and surrounded by loved ones.

We know that this blog was very important to her, as a way to make sense of her struggle against this illness, as a way for her to communicate with people and as a way for her to practice her love of writing. We have attempted to contact people we know, but she also touched many people through this blog that we would not know how to reach otherwise.

We will be holding a visitation/memorial service for Ceil on Thursday, January 8th from 3-7pm at the Hawthorne Funeral Home. We welcome all of her friends to join us. See the site for directions and details.

In lieu of sending flowers, please consider making a small donation to the NYU Cancer Center in Ceil's name. They were so incredibly wonderful and supportive of our mom, throughout the time she was fighting this disease, and they continue to do very important research. (NYU Melanoma Research Fund, NYU Clinical Cancer Center, 9th Floor, 160 East 34th Street, NY, NY 10016. Attention: Dr. Pavlick, In memory of Celia Silver Rosenfeld)

Please feel free to leave comments here for Ceil, her friends and her family. We would like to print these comments out and have them available at her memorial service. Let us know if you would prefer not to have your comments included in this event. If you would rather send a private message to the family, or have questions about her or this blog, we will continue to receive email at Ceil’s email address (ceil[at]ceilsilver[dot]com) or you can use Rachel’s email address (mirka23[at]gmail[dot]com).

Thank you all, our mom was very special to us, and I know she was very special to so many people.

Off the pump

Chemo. The word alone is frightening. “So-and-so is on chemotherapy.” This used to easily invoke images for me of faceless techs in darkened rooms administering painful injections of searing drugs; patients retching for hours on end. Maybe that’s a little dramatic. But surely, it must be a sad and somber event.

Today was my second in-office infusion day, and I’m here to report… there could be worse. Every individual has their own experience, of course, and the point on the timeline contributes to one's current reaction; it's said to be cumulative. But today again, my visit to the infusion floor was pretty relaxing.

The medical staff is kind, empathetic, warm, and helpful. My “infusion nurse” is the same every time I go in. There’s comfort in consistency, and she’s a delightful person, to boot. She grimaced in reflected pain when she saw how irritated my sensitive skin is from the bandages holding the IV tubes in place. She administered my dose of Abraxane, drew blood many times, joked and schmoozed, and sent me home. I look forward to seeing her next time, even if it does mean she'll hook me back up to the pump.

I brought along special friends: my computer and cell phone, so I was able to get some work done and feel connected to my life. I dozed in my reclining chair, ate lunch, walked around when I needed to stretch.

I still don’t know what to expect of this journey. I asked my doctor a lot of questions this morning, before getting started. It’s a fine line to walk. I want to gather enough information to feel some control, but not speculate so much I get lost in “what-if” circles.

I asked about the side effects I experienced last week: headaches, fever, migraine aura – all expected results in this study. There’s no reason to believe the dog tick I found on the back of my leg last weekend contributed any measurable ill effects, but we'll watch for unusual symptoms from that too.

“What will you look for when I go off the meds and get scanned?” I asked.

“After the first cycle, we’re happy if the tumors remain stable from the last scans. If they’ve grown in size and number, we’ll rethink the plan we’re on. If they get smaller, that’s a terrific sign, but even if they haven’t changed at all, we’re encouraged.”

“Okay… chances are good then we’ll do a second cycle,” I speculate hopefully, “but what determines if you do a third, or a fourth?”

“We’ll continue as long as we see improvement; even a plateau.”

“I thought there was a ceiling of four cycles in the trial. Do you ever do more?”

“Yes. The protocol initially called for four cycles. But when we see continuing improvement, we continue the treatment. We’re looking to change the protocol to spell this out.”

So this is what research is all about: Set goals, and when the results come rolling in, change the parameters to achieve higher and higher goals.

When I first met my oncologist five years ago, she told me she hated melanoma. It’s personal with her, a vendetta. She hopes to find a cure, and she works very hard at it. She works for one of the top medical centers in the world, in a city full of world-class medical treatment. It’s not a race to see who gets to the top of the mountain first; she collaborates with the other top centers. NYU, Sloan Kettering, Columbia-Presbyterian – they all remain connected and aware of each other’s research. Her ethics dictate that if there were a better program somewhere else, she’d send me there.

Over the years I’ve seen her look weary many times. Melanoma takes its toll even on those who don’t have it! Just as my elephant can run me over in an instant, she sees patients all day long, each never far from their own elephant. She’s constantly dodging pachyderms, and I’m sure it’s exhausting!

When I first met her, I was so impressed with her dedication. My clinical trial is not her only research. She’s exploring vaccines also. Something stirred deep inside me, a desire to help her achieve her goal. Maybe that’s part of why I’m here….