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.

Feeling some better

When I got to the City this morning for my appointment, I had to take a cab to the Cancer Center. I usually welcome the exercise, but this was the first time I was unable to walk the ten blocks from Grand Central.

The nurse who took me in looked twice. “You don’t look so good.”

“Is my color grey?”

“You’re very pale.”

She sent me down to the treatment floor while the lab tested my blood. Sure enough, I’m anemic, very much so. My hemoglobin counts were almost low enough to consider a blood transfusion! That accounts for some of the tiredness. And it occurs in reaction to both chemo and melanoma.

I got a massive infusion of “fluids” in addition to the steroid. And at the end I got a shot of something that boosts red blood cell production.

I left with prescriptions for more and stronger pain patches, a new anti-nausea drug, Reglan, an increased appetite, and a confidence that I can get through tomorrow without passing out.

Encore

I’m sick again.

I was feeling particularly fatigued last week, so emailed my doctor on Friday and asked if this could be from the medication I’m now taking. “Anything’s possible,” was her email response. That night I had fever of 101.3.

On Saturday, I woke with normal temperature, but it climbed to over 101 again by afternoon. The same thing happened Sunday and again today. I was in email contact with my doctor every day, so she invited me in to run blood tests and cultures this afternoon.

So far there’s no indication that it’s anything bacterial, but she started me on a proactive course of antibiotics to fend off upper respiratory or other infection.

As I was leaving her office I said, “I won’t hug you. I don’t want to spread anything around.”

“It’s okay. I never get sick,” she said.

“Neither do I.”

The irony wasn’t lost on either of us.

Airtime

The interview with Dr. Jay Adlersberg of WABC's Eyewitness News will air on television this afternoon about 5:50 PM. Don't worry if you miss it when it airs. If you go to the Eyewitness website afterwards and click on "7 ON CALL" on the left, you'll see a list of broadcasts from the past couple of weeks. Each of Dr. Adlersberg's pieces has a transcript and a video, though it appears there's a delay of up to a day before the video gets uploaded. The starting timestamp on most of the videos is 5:55 PM, though some start at 5:54.

I don't know what happens to a piece when it scrolls off after the list fills up. I don't know if the link remains active even though you can no longer see it to select it, but I hope to find out later this afternoon when I try to link directly to yesterday's oldest piece.

In any event, I will post the direct link later today. I'll add it to this blog post, and hopefully it will remain active after its two weeks of fame is up.

The interview was fun to do. Dr. Adlersberg spoke with me, with another patient, and with our oncologist. They shot a lot more footage than they need, since each of the health broadcasts gets edited down to about two and a half minutes.

P.S. The melanoma piece is now up on WABC's website, video and all, including a really ugly set of pictures of melanoma lesions. The picture you see when you click the link and first go to the site is not in the video; it's my treatment nurse starting my IV.

Interview

I’d been to the Cancer Center to have blood drawn this morning and was sitting on the train on my way home from the City when my cell phone rang. My doctor announced herself.

“Oh dear,” I exclaimed. “Was I supposed to see you this morning? I wasn’t aware I had an appointment.”

“No, she said. I’m calling because ABC contacted me. They’re doing a piece on melanoma awareness and they want to interview a couple of my patients. They asked for someone who’d had melanoma on their foot and I thought of you immediately. People need to know that melanoma can show up in unusual places and they need to see more of cancer survivors.”

We talked about it for a few minutes and I agreed to the interview this coming Tuesday. I’ll let you all know when and where to find the broadcast.

My big decision at this point is whether or not to wear the wig. I’m leaning toward “not”. In fact, I went to my lab appointment in the City this morning without it!

New treatment

I met with my doctor to discuss the results of my latest scan and the news is, well, mixed. There are still no hot spots on the PET scan, but the largest tumor has actually increased in size a small amount. The remaining tumors appear to have developed resistance to the chemotherapy.

My doctor says she wants to intercept this new trend early and switch my treatment. Her new plan is to pull me from chemotherapy and start immunotherapy instead. This type of treatment takes a different approach in that it doesn’t attack the melanoma directly. Instead, it is an antibody, a common blood protein that stimulates the body’s immune system to a higher level of vigilance.

A healthy immune system’s T-cells attack foreign bodies, and are normally modulated by a protein called CTLA-4 that shuts down the process when it’s no longer needed. Without CTLA-4, T-cell activity can continue unchecked and become an auto-immune disease. But in the case of cancer, CTLA-4 may suppress the immune activity prematurely, giving the cancer an opportunity to grow without T-cell intervention. Research indicates that interrupting CTLA-4 can allow the immune system to continue to attack the cancer.

In a couple of weeks I’ll get my first infusion of Ipilimumab, this new drug whose name I absolutely can’t pronounce. The treatment will be simpler than what I’ve been through: one infusion every three weeks for a twelve-week cycle. Side effects can include fatigue, itchiness, rash, and diarrhea; they may be minimal, and I might even get my hair back.

How do I feel about all of this? I’m not happy to find out how resilient this damn melanoma is. It’s pretty distressing to be reminded there is still cancer in my body and it can thumb its nose at my attempts to get rid of it. Additionally, starting a new treatment fills me with the dread of the unknown. It may be simpler, the side effects may be minimal… but I don’t know that yet. I’m sure I’ll feel better about the process when it’s underway.

On the other hand, my doctor says that patients who undergo this new treatment after taking Temodar tend to do really well. Temodar may somehow set the stage for very efficient T-cell activity.

Time will tell….

Too much media

When I was with my doctor yesterday, we talked candidly about treatment, death, even our shared dislike of the media. I opened the topic by asking about presidential candidate John McCain; I saw an interviewer bait him with a question about his run-in with “the most lethal form of skin cancer.”

“Did he have melanoma?” I asked her.

“Yes,” and she spoke briefly about his publicly disclosed diagnosis. “The NY Times asked me to comment on it, but I hadn’t seen his medical records. I refused to speculate about it for them.”

I was so proud of her. I know she has an opinion; she has an opinion about everything! And she’s a melanoma specialist. But she has way too much integrity to get dragged into an event where the news media generates the news.

In fact, that happens most of the time: News media simply can’t stand to sit still. If nothing incendiary is happening of its own accord, they stir something up so they can report it. It truly infuriates me.

I wake up to news radio in the morning. It’s better than a buzzer alarm because it doesn’t stop if I happen to keep sleeping, and it’s really noxious noise. Eventually I have to get up, and in the process, I pick up on the really “big” stories of the day. Often though, I find myself yelling back at the announcers. I can’t stand their smirky innuendo.

Correct me if I’m wrong, but it seems to have gotten a lot worse in recent years.

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!

Plan B and a half

I got to the cancer center this morning with computer, clothes, and personal items in tow, ready to start pumping Genasense into my mediport IV and then head for the hospital. As I waited in the exam room for the pre-treatment meeting with my doctor I could hear bits of conversation in the hall. They were talking about me. Things were not going to proceed as planned….

There were a number of reasons to pull the plug again today. Top on the list were the hospital arrangements. It seems there was no guarantee of a room, availability going first to ER patients who are stacked up in hallways as I witnessed firsthand two weeks ago. In addition, the oncology nurse stationed at the hospital is on vacation this week. Although the floor nurses are good, they are each responsible for six patients, whereas the oncology nurse is familiar with and devoted to the special needs of my situation.

There were additional issues, questions posed by the cancer center nursing staff. They didn’t like the idea of starting treatment in one place and moving me to another venue. What if I had a reaction in transit? Who in the hospital has experience with a pump and mediport and can start my IV? Where would they prepare the drug and pump, in hospital or in the cancer center pharmacy? And how will they get the drug to me?

So we’re making progress. We still have a plan, but we also have another delay. I have another week to feel good and energetic and they have another week to work out the details. It’s a bit disappointing to be prepared to move ahead and then have to wait, but it’s not anywhere near as bad as not knowing.

I will get a phone call Sunday telling me when to show up at the hospital Monday morning. Two of my regular nurses will be there to help get things started, a nurse supervisor from the infusion floor and the nurse program coordinator in charge of research. And we should know by Tuesday how well the pre-treatment works for me.

The little buggers are on the run!

I had my second PET scan on Monday, a follow-up diagnostic test just like the one I had in mid-June. This one was administered to measure the effects of my first six weeks of chemotherapy.

The procedure started with an intravenous infusion of radioactive glucose and a large drink of barium sulfate. Then I sat for about an hour while my body took up the fluids.

Next step was a CT scan. I lay on my back on a table that slides into a huge, space-age looking device. If you’ve never encountered such a machine, in person or on the likes of Grey’s Anatomy, this very imposing piece of equipment is a large, round, open-ended tunnel that projects x-rays toward you as you slide slowly through it. Unlike a simple x-ray machine, it records a series of images that present a three-dimensional view of the subject’s insides. It’s not painful or particularly uncomfortable. You simply lie still as the table slides to the proper positions to photograph what the doctor wants to see. This procedure took another hour, as they scanned my entire body, head to toe. A trained radiologist later reviewed the recorded images.

All cells consume glucose, but malignant cells are particularly greedy. They have a higher rate of metabolism than normal cells, so gobble up the glucose voraciously, and in the process, they light up from the radioactive substance. The radiologist looks for these metabolic “hot spots” to determine where tumors are growing.

In June, they identified about ten tiny nodules. This wasn’t a lot of cancer, either in size or amount. The largest tumor was less than two centimeters. Two months later, this past Monday, there were no hot spots at all! All the glucose was taken up equally. There were no visible pinpoints of light in the PET portion of the scan.

So where did they go? Well, the tumors are still there. They are dead and dying, but my body hasn’t fully absorbed or flushed them. They show up on the CT images as dull concentrations of cells, but there is nothing “hot” to be found.

I met with my oncologist this morning. She is very excited about these results. Needless to say, I am also. She tells me that when patients respond to this treatment in this manner, they respond “completely.” They go into remission “forever.”

Those are actually hard words to hear. I’ve been so very anxious the past few weeks, increasingly so as the date for the PET scan approached. I’ve been preparing myself for the best possible outcome, but I also have experience being blindsided. Twice, cancer fell out of the sky and took over my life. Twice, I got phone calls informing me I had melanoma I had no suspicion was there. At the same time I felt that my body was strong and healing, I was afraid to ignore the possibility of unwanted results.

“And how long is forever?” I asked, cautiously optimistic. After all, I was cancer-free for five years until this spring.

“Eight years,” the extent of the research so far with this clinical trial. Patients continue to get scanned once a year, but so far, their cancer hasn’t returned.

Where to next?

This coming Monday I’ll start the second treatment cycle. Another six weeks of drugs, starting with a weeklong infusion of Genasense. Genasense is the experimental drug that acts as a sensitizing agent. It alters the melanoma’s DNA so it’s no longer programmed to live and grow forever. In its weakened state, the melanoma is very susceptible to the killing power of the Abraxane infusion that ends the first week.

I will undergo at least two more entire treatment cycles and possibly a third; that’s another four to six months of managing side effects and missing my hair. On the positive side, the treatment is moving in the right direction, and I feel about a hundred pounds lighter!

Questions for the doc

I brought up the issue of last week’s near-fainting incidents with my program coordinator nurse this morning. “Is this what the doctor meant when she said I’d crash?”

“Not at all. You’re the first to report such symptoms. It sounds more like a hypoglycemic episode. Make sure to eat, especially in the morning, especially in this heat.”

(I love food, but morning and heat spells are not my favorite times to eat!)

“And speaking of eating, are there any guidelines? I hear some say eat soy, others say to avoid it.”

“Nutrition is nutrition. Just eat well. And stay away from raw foods that may be contaminated, like sushi.”

(Bummer! I love sushi. It’s a small price to pay, though, to improve my chances of getting well.)

“What about alcohol? Is that allowed with chemo?”

“A glass of wine or beer with dinner is okay.”

(Sigh… so much moderation… so many things to consider.)

I’m two weeks into my first cycle of treatment and still learning the ropes of what to expect and how to react. One thought keeps surfacing in conversation and in my quiet moments: Apart from the bad luck of having cancer, aside from the devastating connotations of terms like “metastasized” and “stage 4”, I feel fortunate. The doctors found my cancer because they were looking for it, because they were monitoring me. If I hadn’t been scanned every year since my initial melanoma surgery, I could easily have turned up a year or two from now with raging symptoms and uncontrollable tumors throughout my body – not a pretty thought, but it does happen. In fact, most of the deadliest cancers do their dirty work in the dark silence of internal organs, frequently announcing their presence only when it’s too late to root them out.

In addition to early detection, I’m also fortunate to have a dedicated, world-class medical team available to me. Melanoma is not something to toy with. It’s vicious and sneaky and insidious and lethal. I can count on spending the rest of my life being vigilant about smoking it out of hiding.

Every day's an adventure....

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….

Mediport

I had my mediport placed yesterday. As explained to me, a mediport is a small titanium reservoir embedded under the skin between my shoulder and neck, near the collarbone. Its rubber covering allows access via a special needle, and at the other end, a tube attached to the reservoir empties into a nearby vein. They choose a larger vein to minimize irritation from the chemotherapy drugs that are going to flow through it. The doctor explained that a lot of the sickness chemo patients experience comes from running the drugs through small veins.

I was sedated for the procedure. Good thing too, as this was essentially minor surgery. I didn’t feel any pain while it was going on, and was able to walk from the hospital to the train station shortly afterward. But the experience and sedation knocked me out. I fell asleep soon after I got home and slept for twelve hours.

The doctor who performed this surgery is the same one who did my pulmonary biopsy. “Do you have any questions for me?” he asked.

In fact, I did have a question that others who know me may have wondered also. “Are there different types of cells for different cancers? They found cancer cells in my lungs. Why is my diagnosis melanoma and not lung cancer?”

He explained that pathologists do in fact have ways of distinguishing among various forms of cancers. They use a number of different stains to clarify and identify characteristics. There was a pathologist with a microscope in the room with us during the biopsy, so they were able to look at my aspirated cells right away. He remembers that they appeared dark, indicating the presence of melanin, the pigment-producing skin element where melanoma grows.

This begs the question: Is it better or worse to have metastasized melanoma or lung cancer? In fact, every case is different, but that may be more of a philosophical issue than medical.

“You’re kidding…”

The first sign of something amiss came in April, five years after my initial encounter with melanoma.

In 2002 there was surgery to remove that awful invasion of my skin. Pathology tests of the lesion and sentinel lymph nodes revealed no signs of lingering cancer at that time. The oncologist who’s been following my case ever since has prescribed annual follow-up CT scans of head, chest, abdomen, and pelvis. For four years, my appointments with her have bordered on giddy. She’s been thrilled to see me remain cancer-free, and I’ve been secretly delighted to know myself as the healthiest patient in the Cancer Center.

Until year five.

“We have to talk about your scans,” she said soberly. “There’s something in your lungs that wasn’t there last year. It could be nothing, but we can’t ignore it.”

She sent me for a pulmonary biopsy to get more information about a condition I convinced myself was nothing. I was cancer-free, after all. I had a serious bronchitis about three years ago, and seasonal allergy-type symptoms ever since. The lung crud must be related to that. Maybe it was asthma, or TB. I’d worry about what it might be when I got the news it wasn’t cancer.

Instead I got the devastating report from my oncologist this evening. The results were a long time coming. The pathologist had sent my cells out for “additional staining”, clearer delineation. It was nearly three weeks before they came back with a verdict.

“They say it’s melanoma,” she said.

“You’re kidding,” I said, disbelieving.

What a stupid thing to say! What doctor would call and joke that her patient has cancer? Where is my head?! I feel myself sliding into numbness.