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.

On a new course

I started my new treatment this week. So far so good. My doctor and I were talking about what side effects I might expect, most typically rash, itch, and diarrhea.

“But most patients don’t see those until after the third cycle, if at all,” she said.

“Third cycle?” I asked, visibly distressed, recalling the schedule the nurses handed me last week when I was in the office for blood work.

“I meant the third treatment. You’ll have one now, then again in three weeks, then a third three weeks after that.”

“But the schedule they gave me last week has appointments through October. I thought a cycle was twelve weeks, and their schedule includes two full twelve-week cycles.”

“Yes, but the second twelve weeks is observation only. You get scanned after the first twelve weeks. We watch, and let the meds settle in to work for another twelve weeks. Then you get scanned again. This treatment is long-acting. We’re not likely to see any change until after that second scan.”

I was still stuck on the schedule they’d written out for me, so I pulled it out of my bag.

“See, it shows appointments all along through the second twelve weeks.”

“Well that’s a mistake,” she said, to my relief, and went on to explain more of the protocol.

After the initial treatment phase, patients go on maintenance, with infusions every three months. Because this is still a research study, there’s no definitive word about how long this should go on, but eventually, the treatment will reduce even further, or even be discontinued.

She warned that the first twelve-week scan frequently shows no improvement, and may even show a reversal. Patients however, tend to report feeling a lot better at that time, so the researchers have learned not to scan too soon, and not to take these initial results too seriously. The second twelve-week scan is when improvement is most likely to show.

After our discussion and hugs I went to the treatment floor, where the nurse administered my intravenous dose of Ipilimumab, and measured my “vital signs” (temperature, blood pressure, pulse) before during, and after the infusion. The process was painless, and I’ve been feeling fine since.

Oh, and I got a lesson in how to pronounce the drug’s name. It’s not so tricky after all: Ip-li-mu’-mab. Just trips off the tongue!

Bagpipes in Grand Central

I woke up this morning wishing there were a way I could phone in my lab work.

It’s one of those Mondays where I need to go to the Cancer Center only to have my blood drawn and tested. I ride the train into the City, walk the ten or so blocks to the doctor’s office, get stuck with a needle, turn around and walk back to Grand Central for the ride home. It’s a lot of effort for such a short process. If any of you have figured a way to do this via email, please let me know!

Today was special; New York displayed its finest “something’s happening” vibe in honor of St. Patrick’s Day. The inbound train was full of people wearing green t-shirts, some printed with very clever sayings like “Irish Whiskey Makes Me Frisky.” Grand Central acted as pre-staging area for uniformed groups of marchers to meet before heading over to their actual parade staging stations. And of course, Irish of all nationalities and ethnicities were out in full force.

Back in Grand Central, there were indeed bagpipers in kilts prolonging the festivities, taking advantage of the tremendous acoustics, and getting photographed with and for the tourists.

I love the way New York can party right in the midst of daily life.

Straight talk

I had a really satisfying talk with my doctor this morning.

“How are you doing?” she asked.

“I’m impatient,” I said. “I mean, this last week has been hard. The business of no news from the scan… it wasn’t supposed to happen like that. I want this to be over. And at the same time, I realize there are lots of patients who don’t have that option. It appears I’m not dying. I should be more grateful. Guilt, impatience, disappointment: It’s all making me crazy.”

She looked piercingly at me and said, “This is melanoma. There are no guarantees, nothing to take for granted. I’ve seen people with a huge amount of disease get dramatically better, and I’ve seen some who look like it should be manageable, and they suddenly die from it.” She talked about the way patients get lulled into thinking that a course of action should simply continue, forgetting that melanoma has its own mysterious set of rules. She talked in the third person about how people get disappointed when a positive trend suddenly stalls; how they forget they can't count on it.

I didn’t feel scolded. It wasn’t meant as a scolding; it was a wakeup call. “You’re right,” I said. “When I first got the diagnosis I was overcome with worry: Will I die? Will I be able to take care of myself? I had to remind myself to stay focused in the present. But it’s just as important when things are going well to keep from getting too far ahead of myself.”

And then, “You mean, my reaction isn’t unusual? Other people have this jumble of feelings when this happens?”

“Oh yes,” she said, and after a pause the conversation turned personal. “I felt the same way when I saw your scan report. I had expected it to continue and I was disappointed when it had nothing new to offer. But then I wanted to kick myself; what was I thinking?!” She was no longer speaking in the third person. “I had to remind myself there are no givens with this disease, nothing to count on. I start thinking ‘hey, I’m raising the cure rate to 50%,’ but then I have to remind myself not to get cocky. Patients plateau. Maybe their bodies become resistant to the drugs, for whatever reason. If that happens here, we’ll go to some other treatment. We’ll just keep going on... and be grateful we have the option.”

I’ve said it before: My doctor is a remarkable woman. She’s compassionate, kind, and honest, in addition to charachteristics you'd expect, like intelligent, analytical, and tenacious. I’ve never met another doctor like her. More than a couple of people on her staff have remarked to me that they remain in their positions because of her. They feel a loyalty to her and the program she’s built up.

She talked some more about the people she’s hiring, the renowned program she’s developing, the papers she’s happy to co-author, and the staff she’s eager to share that honor with. She’s really good at research, great at getting things done. She’ll nearly double the size of her program by the summer and take a more supportive, administrative role. She’ll cut back her patient involvement, but I hope that doesn’t mean I’ll lose touch with this loving, lovely woman.

She handed me my chart to take to the treatment floor, we hugged, and she thanked me for the "therapeutic talk." She is such an anchor for me!

Progress

My doctor walked into yesterday’s appointment and said to me, “You look good, really good.”

I don’t know what she saw. I’ve felt healthy since the beginning of this ordeal. We noticed the cancer’s presence before it had time to work too much evil in my system, before it manifested symptoms. But also, the chemotherapy is working, and good as I felt on day one, I feel progressively better all the time.

“When I think of my cancer these days, I tend to think of it in the past,” I told her.

My doctor and the three nurses in the exam room all cheered.

“That’s the attitude that cures!”

It’s hard to know what came first. What is attitude and what is reaction to fact?

I do believe that visualization helps you achieve goals. Keep in mind a picture of what you want to do and the image helps you accomplish it; see where you’re going and it’s easier to get there. From the beginning I forced myself to focus on good scan results, to refrain from getting bogged down in thoughts and fears that the chemo would fail. But I’d been blindsided before; I knew these results were somewhat out of my hands. I didn’t want to be too devastated if it didn’t work out.

All in all, I remained as positive as I could. I got good results. The good results fed my positive attitude. Now it no longer feels like “attitude”. I look at where I stand in the overall picture and I see tumors nearly vanished. Where I came from is littered with cancer. Ahead I see me in a cancer-free state.

That’s what I meant when I said I see it in the past. But I need to remain focused, not get too far ahead of myself, and comply with all the steps from here to the end of the road. I may feel really good, but it’s not over yet.

Boring

The other day, at my latest visit to the Cancer Center, I was discussing side effects with my team: my oncologist and a couple of nurses. They had me define what I mean by terms like “indigestion”, “heartburn”, “constipation”, “migraine aura” so they can quantify the severity for their records and compare them to other patients. Since I’m in a clinical trial, my chart gets reviewed by a lot of people, and they need to maintain clarity and consistency in their record-keeping.

After a while, my doctor got up, hugged me, and told me she loves me because I’m boring. I’m fairly certain she wasn’t commenting on my personality, or the state my life has devolved to – at least I hope that’s not the case! Rather, she’s very pleased with the lack of turmoil in my health profile.

In fact, most of the time when I think about my cancer these days, I think about it in the past. It’s not gone, and I really must guard against getting too far ahead of myself; but the truth is, I feel great. My symptoms and side effects are manageable and under control, and my energy is quite good. One day last week, I even dashed for a commuter train!

I still have months of chemotherapy left. We need to put the whole of the disease behind me, which means taking every last step to a completely tumorless scan… and beyond. And once that’s done, I’ll need to maintain a lifelong vigilance with periodic follow-up scans.

The adventure goes on… but without quite so much high drama.

Fewer and smaller

I met with my oncologist today to discuss the results of Friday’s PET scan. As in the previous two scans, there are no metabolic hot spots at all, no signs of active malignancy. The tumors are continuing to shrink and disappear. The largest one is now 8 x 4 mm, down in size from 8 x 9 mm on the prior scan. Things are still moving in a positive direction; all indications are that the cancer is on its way out.

This report comes as a relief. I was nervous about dropping Genasense out of the mix of drugs. My doctor said she wasn’t worried about that, but admitted her concern about the long delay between cycles two and three. We seem to have weathered that storm.

But what does this mean in terms of how much longer I need to be in treatment? Today is the first day of my fourth cycle. Is this the final cycle?

“No,” my doctor said when I asked her this. “I want to see a clean scan first, and then we’ll go one more cycle after that to make sure we’ve gotten it all.”

I appreciate her intelligent, cautious approach to my health, even though I’m not thrilled to be taking these toxic drugs “ad infinitum”, as I heard her say to someone in the hall outside the exam room.

“Ad infinitum?”

“You weren’t supposed to hear that,” she responded.

She wasn’t condemning me to a lifetime of chemotherapy; just commenting that we’ll go as long as we have to in order to get rid of it all. That’s something I can live with!

Happy New Year!

What a strange thing time is. Minutes crawl by – in the case of my life this past year, minutes crawled by menacingly – but weeks zoom past. And like it or not, ready or not, another year has been consumed.

It’s the second week following my latest chemotherapy cycle and I have another PET scan scheduled this week. I’m nervous about it. I don’t know what to expect since I stopped taking Genasense. The last time I spoke with my doctor about it, she seemed unfazed.

“There’s no reason to think the results of this scan will be any less positive than they’ve been in the past,” she said. “It’s a clinical trial. We don’t know what the exact dosage needs to be in order to be effective.”

I keep reminding myself of that; the Genasense I took through the first two cycles may very well have completed its job. It boosted the effects of the remaining two drugs I take, that’s for sure. It’s likely the Abraxane and Temodar can continue to wipe out the small amount of remaining cancer without assistance. We’ll know more when the results of the scan are in and I meet with my doctor again on Monday.

And in the meantime, Happy New Year! I wish peace and great health to all my friends and family, all of you who have sent good wishes my way this past year. May 2008 be wonderful for all of us!

My contribution to the research

I won’t hold out for suspense. It didn’t work.

I got to the hospital mid-morning, checked in, then waited in my room for all the pieces to fall into place. The nurses arrived with drugs and equipment, and started up the Genasense pump about 2:30 this afternoon. Within minutes I was consumed by heat, nausea, tight throat – the same reaction as the past two Mondays. This time was particularly intense. I had back spasms. It felt like I was hooked into an electric socket, shocking me randomly to the point of nearly doubling up.

Two of my regular nurses from the cancer center were at bedside, along with two equally wonderful nurses who are on staff at the hospital. All were concerned. All were prepared. I’d had infusions of steroid and Benadryl before starting the Genasense. Once the reaction started, I got additional doses of both plus oxygen. Aftershock waves continued intermittently for about an hour, and by then, the episode was mostly over. The Benadryl knocked me out. I slept.

I’ll see my doctor in the morning and lay out the path. We’ve talked about it already, so I know she intends to proceed with just Abraxane and Temodar. I start taking one Temodar pill each night for six weeks, starting tonight. I’ll get my first Abraxane infusion of the cycle next Monday, as if I’d taken Genasense all week.

It’s a little scary for me to deviate from the plan that was working so well, but I have no choice. The cure can kill me.

Genasense targets Bcl-2, a protein in melanoma cells that prepares them to live forever. Once they’ve been altered to accept cell death, the Abraxane and Temodar come in to do the dirty work. My last PET scans revealed that the tumors are no longer active, no longer alive. It’s quite possible that Genasense is superfluous at this point in my treatment. It’s unsettling, but not an entirely unwarranted proposition.

It may sound a little hokey, but painful as this experience has been, I'm actually glad to have an opportunity to add something to the body of knowledge. The research study will go on, and I'm sure this reaction will surface again, except they will have a clearer idea how to handle it as soon as they see it. My personal involvement is my number one priority, of course, but the study is much bigger than me.

Freak-out

A friend sent me an article announcing Genta’s completed appeal to the FDA in clinical trials with CCL (Chronic Lymphocytic Leukemia). It was a typical cut-and-dried news release until I came to the section on “Safety” where it mentioned casually that nine patients experienced "adverse events that resulted in death" in the course of treatment with Genasense.

You can call me naïve if you want. I realize I'm in a potentially life-threatening situation, but I guess I didn't actually think I was in danger of dying until I saw the word "death" in print. That scared me.

My untrained mind connected my severe allergic reaction with the adverse events in the article. I was under the impression that only a handful of patients had this kind of reaction and nine deaths then seemed like a huge percentage of the allergic population.

But it seems I may have mixed apples and oranges and jumped to an unwarranted conclusion.

I emailed my doctor with my questions and concerns and a few hours later received her thoughtful response:

“You cannot apply this to patients with solid tumors. Patients with CLL undergo tumor lysis which can cause kidney failure, heart abnormalities from the rapid release of potassium and they already have a severely impaired immune system with the CLL, so many get very odd infections. You are not this population. …. None of these deaths were from “allergic reactions” they were from “adverse events”. None of the reported info pertains to you.”

She cited her own article on a study in which no melanoma patients in the group of 771 died of drug related complications, and went on to give me an out: if I am not comfortable with the proposed plan of treatment, I can choose to forgo Monday’s in-hospital Genasense infusion and continue with Abraxane and Temodar alone.

What I appreciate most about this woman is that she takes me and my concerns very seriously. She always answers my questions patiently and in language I can understand. She is a treasure!

I will be in the hospital Monday morning for treatment.

Another treatment day

The day started badly. I showered and dressed and got ready for a long appointment in the Cancer Center. But I missed my train. The next one would come along in about half an hour and get me into the City about forty-five minutes late. Standing on the platform, I remember the lunch I so carefully prepared to bring with me. It was still sitting on my kitchen counter. Whoo boy.

As I walk from Grand Central to the doctor’s office, already feeling hungry and craving pastrami, I call my daughter, who I hoped would be at her desk computer. “Can you find me a pastrami sandwich on Third Avenue between 42nd and 34th Streets?” And sure enough, she does: “Sarge’s Deli, where pastrami is king.” I knew if anyone could locate something like that in a trice it would be my daughter, the “semantic web” specialist. I was simply delighted to be able to satisfy my craving.

The appointment starts, as always, with blood work. Sometimes there are more tubes to fill than others. Sometimes there is more blood to draw after the infusion. But always, we start by drawing blood.

I know all the phlebotomists by name. They see lots of patients in the course of a day, so they are all well practiced and good. But they have different strengths. Josef, for example is my favorite. His needle sticks never cause me pain. Never. Today, Judith drew the blood. I feel the needle sting as it goes in, and she sometimes leaves small bruises behind, but she is always very engaging and we chat amiably.

After meeting with the doctor and nurses who monitor my participation in the program, I go downstairs to the treatment floor. By this time, my Genasense IV bag is empty and the electronic pump is beeping wildly. People in the elevator eye me suspiciously. Is this an escape of some sort?

I sit in my private room and work at the computer while my infusion nurse prepares my chart and orders meds from the pharmacy. When the drugs arrive, she draws more blood. This time, she fills the test tubes from the line into the mediport. It is quick and there is no sting whatsoever. Then she puts the mediport to its more intended use as IV, and infuses first the steroid, then the Abraxane.

By this time, I am very tired. I fall asleep while the IV drains into me, and when it’s over, I have a sort-of dream that I can’t open my mouth to speak, can’t lift my arms, can’t move my head or body. It’s disorienting, but I’ve had this dream before, usually when sleeping in a car. I think it comes from being comfortable enough to sleep, but feeling restricted by the reclining seat. There’s no room to turn over, and I can’t exit the seat without changing to a sitting position. When the nurse comes by to disconnect my line and tell me I can leave, I ask if I can stay and sleep. “Of course,” she says.

An hour or so later, I wake, pack my bag, and get up to leave. I stop at the nurses’ desk to say goodbye. She looks at me and says, “Go back and sit down. I’m calling your doctor.” It seems my face is breaking out in hives. Oh no. This happened a few weeks ago. It started on the weekend, just before the last Abraxane infusion. The steroids cleared it up for a few days, but the condition returned with an intense vengeance several days later when they wore off.

So, it’s back upstairs to show off my hives and get yet more drugs: Claritin for the trip home, and Benadryl to take when I’m near my bed, as it will make me sleepy. They want me to take anti-allergy medications for the rest of the week as a proactive measure.

The day ended badly. I fell asleep from the Benadryl and overslept the radio alarm I’d set to wake up and take my Temodar chemotherapy pill. I hope it’s all right that I took it in the middle of the night instead.

So many medications to keep straight....

Crossed wires

I arrived at the doctor’s office for my 9:30 AM appointment to draw blood. The phlebotomist stared at two test tubes, looking confused. “One is marked 8 AM, the other says noon.”

My doctor poked her head in. She had gotten an ad hoc request from the research committee for additional blood, but she hadn’t gotten the message until 9 AM. We could draw one sample now and another in four hours. Could I plan to come back?

Fortunately, I was planning to stay in the City after my appointment, since I’d arranged to go to a client.

When I got back to the medical office, I had another few minutes with my doctor. I told her I was feeling dizzy earlier, vaguely nauseous. “That’s not a typical side effect. Have you eaten?”

“Not really. I’m also feeling wired, jazzed.”

“Well that is typical. Before the Abraxane yesterday, we gave you a steroid, which can make you feel wired for 24-48 hours. You’re reacting to that. And you will crash.”

Oh dear… elephant alert!

After drawing blood, I walked to Grand Central, where I had just enough time to grab a slice of pizza before getting on a train. I sat down to eat it, took one bite, and felt the color drain from my face. I was suddenly faint, nauseous, sweaty, and clammy. I ditched the pizza and headed for the train, but got only as far as the nearest police stand. They sat me down and called their in-house EMT. “There’s a woman here, about forty, pale and feeling faint.”

If I weren’t afraid I might throw up on him, I’d have jumped up and hugged the young cop!

The EMT was very thorough. He insisted on feeding me oxygen. I kept pulling the mask off.

“I don’t need this. I’m feeling better already,” I said.

“You need it,” he said, as he replaced it over my mouth.

“Your blood pressure is low. I think we should call an ambulance and take you to the hospital.” He was a well-meaning angel, but I’d gotten in over my head. I certainly didn’t want to end up in yet another hospital!

“No, no. Just wait a few minutes and take it again. It will go right back up. Maybe I should go sit on the train.”

And in a few minutes, I did, indeed, regain my color and vital signs. Another EMT carried my bag and shepherded me to the next train. He smiled appreciatively when he lifted my rather heavy computer bag. “I’ve never met a woman who wasn’t stronger than she looked.”

Yes… if not for this damn cancer, I’m healthy as a horse!

I wonder, is this what she meant when she said “crash”?

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….