Too Much Me

Ceil’s Smile

2009-01-09T12:41:00.005-05:00

Many people have told us, by email and in person, that one of the things they will miss most about mom is her fantastic smile. We agree. In the past week, we’ve looked through many of our digital and print photos of mom throughout her life and this has been a great comfort for us. We wanted to share them with you, so I’ve created a set on flickr where everyone can go and be reminded of Ceil’s smile.

A Post from Rachel & Carla

2009-01-05T12:39:00.004-05:00

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.

New complication

2008-12-26T21:53:00.002-05:00

I hope all of you who celebrate it had a wonderful Christmas. And those of you who don’t also had a wonderful down-day. Just a calm warm day filled with the simple pleasures of family, friends, love, and warmth.

That’s what we did: Cast aside any previous complications in our relationships with each other to enjoy dinner with both of my daughters, my ex, my ex’s girlfriend, and myself; a very congenial and caring group.

But today it’s back to reality; my reality being that I can sit or lie down for hours feeling strong and relatively pain-free, but as soon as I get up, or take a few steps, or put something in my stomach, I’m immediately winded and nauseous.

Wednesday I had yet another MRI on my neck and head; another procedure to attempt to explain some of my symptoms. Today I got the test results.

The MRI shows a tiny tumor in my cerebellum. My doctor is “concerned, but not upset” about the turn of events, since the situation is very treatable with Gamma Knife Radiation therapy, they work with a team of radiologists they regard very highly, the tumor is very small, and the size and position of this tumor explain most of my remaining symptoms.

The tumor is located in a part of the brain that controls motor coordination, motion detection, and nausea; in short, deals with equilibrium. They noticed it because, unlike the scan performed in the emergency room last week, the latest MRI contained contrast and included the whole head, not just my neck, producing a very fine-detailed picture.

I will need to consult with the radiologists early next week to schedule treatment. The procedure doesn’t require staying overnight in the hospital, but it is an all-day event, so it requires some coordination to get me to and from the hospital. Fortunately, my daughter who lives in Manhattan will be in town next week, and her apartment is conveniently located near the hospital.

I’ve entered into some scary territory.

On the one hand, there are certainly new risks involved with this new procedure. On the other, in order to restart systemic treatment for the cancer, I need to address the symptoms that are weakening me.

Getting things done

2008-12-23T15:54:00.003-05:00

I have a friend visiting today; it’s great. She washed my kitchen floor (that’s love!), and brought me homemade potato pancakes (genetic), built a fire in the fireplace (warmth) and provided wonderful conversation and camaraderie (that’s priceless!).

There were times in our lives when we could practically dash around the corner for a cup of coffee or a drink together, but she lives on Long Island, while I now live in Westchester, so I don’t get to see her nearly as much as I’d like to. We’ve been friends for almost thirty-five years, share a lot of life elements, and we keep in touch regularly via phone.

Things can’t get much better!

Erratic schedule

2008-12-22T00:30:00.002-05:00

I can’t wait to call my doctor’s office in the morning; so much so that I’m up again in the middle of the night!

Well, it’s not quite the middle, as I’ve slept less than three hours, but I did wake up in mid-hot-flash, feeling like I might need some more pain medicine, and now waiting some until the right interval has passed and I’ve burned off a bit more energy.

Medication juggling act: Cancer involves a mammoth effort of pain and nausea management. I’m looking forward to the feedback on how to proceed. I think we’re on the right track, but I want to get back to figuring out whether Gleevec is “my drug” and if so, what’s the correct dosage

A better day

2008-12-20T17:45:00.005-05:00

I awoke this morning feeling a whole lot better than I have in a long time. For one thing, I slept through the night. And in addition, I was nearly pain-free! My face was less droopy, though not completely so, and it came and went through the day. I’m encouraged from the way the day started that this Bell’s Palsy nerve damage might be a transient condition. The cosmetic distortion is unsettling, but it’s not painful.

My older daughter is still here for the rest of the weekend. By Christmas Day we’ll be gathered again, with my younger daughter, at the home of my ex/her father. His girlfriend may also be there and it should be a quiet, lounge-around day of gratitude, life, and warmth.

I’m so glad we all have this time together. And I’m grateful for the many extensions of love from my very supportive online and offline family.

Thank you and Happy Holidays!

Day in the ER

2008-12-19T22:55:00.002-05:00

I felt an odd sensation as I slept early this morning; the right side of my face became slack. I was worried it might be a stroke! The phone rang early and sure enough, I could barely speak. I blamed it on just waking up, but it was really the loss of facial control.

I called my doctor and my ex, and consensus seemed to be that it was Bell‘s Palsy, rather than a stroke, but that I should go to the local emergency room to have it checked out. I needed to take medications, but I wasn’t sure what I could keep in my stomach, and I needed to get hydrated, so it seemed a particularly good idea.

I’ll spare the details of a day with yet more doctors, procedures, bad weather, and just getting by. The short version is that I had a CT Scan, chest x-ray, and an EKG - the usual tests - and they came to the same conclusion, that it's Bell's Palsy. Just when it seems things can’t get more complicated, they do. I certainly hope this condition is short-lived; it can be.

My ex continues to be terrific. He spent the morning in the hospital with me, and my older daughter is home with me now to help me through the weekend. I’m ready to crawl back into bed.

Brutal day

2008-12-18T23:00:00.001-05:00

I slept pretty well last night; fitfully, but relatively pain-free. When I woke up at 3am I needed to do something to get me back to sleep, so I got up and washed dishes!

By morning, however, the picture had changed dramatically. When my ex called to check on me, as he does every day, I was in a bit more pain, and my energy was so low I could barely move to get to the phone. A couple of phone calls to the doctor, and it became apparent I needed to see her, probably to address a recurrence of anemia.

Fortunately, Thursday is his day off, so my ex drove me to the city for blood tests and appropriate treatment. The lab numbers came as a surprise: No anemia and most counts as good as could be expected. But I was in a lot of pain by that point, and let me tell you: Fighting pain is exhausting!

There are other things going on, of course; I’m taking a huge number of drugs, each with its own influence on blood counts. The juggling act becomes complicated in that some of the drugs make me groggy to the point where I lose track of what I’ve taken.

My doctor, who’d just seen a patient with severe respiratory disorders from Gleevec, didn’t want me to also reach that state; she brought her intuition and recent experience to bear and said, “I think it may be a toxic reaction to Gleevec. I want you to go off it for a couple of days.”

NO!

She saw the panic in my eyes. “Not permanently; we may need to adjust the dose down. Every patient is different, and we have to find the correct level and schedule.”

In the meantime, we also need to get the pain under control. She wants me to be pain-free nearly the whole day, not just the four-to-six hours I’m now experiencing, and not just while I'm sleeping; then we can start cutting back on pain meds to where I’m not so dependent on them. And all this takes time, since changing too many variables at once calls reactions into question.

I left the Cancer Center with a couple more prescriptions, a huge checklist of drug doses and scheduled times, to keep my intake organized, and a lot of advice about how to handle situations like “breakthrough pain” and nausea.

On a more personal note, I’ve been trying to keep this blog up-to-date. In addition to keeping friends informed, it helps me to achieve organization and continuity. But it’s very difficult. The physical and energetic swings come fast and furious, and there are days, even if I can get out of bed, I can’t sit up and rouse my focus long enough to get something written. Tonight, I’m feeling a bit better, but am plagued by nausea and vomiting.

Tomorrow is another day.

Gleevec: Anecdote

2008-12-15T14:33:00.003-05:00

My doctor has a patient who was ravaged by melanoma. The woman had reacted badly to many of her treatments and had reached the end of her rope. She entered hospice, where she expected to last out the rest of her life in relative comfort.

My doctor noticed that this woman’s melanoma had started in moist lesions, but initial suggestions to try Gleevec met with resistance. The woman was convinced her time was up and didn’t want to go through the pain of more experimentation. My doctor, however, prevailed, and the woman started taking Gleevec.

Several weeks later, the woman reports that she is back on the treadmill, back on the tennis court; and best of all, she’s been kicked out of hospice! She knows she’s getting better because her kids don’t call anymore.

Lately I've been thoroughly consumed by pain management and exhaustion management. It finally hit me this weekend, there's one outstanding question: will I respond to the drug? There will be anxiety in this household until I get an answer to that. But in the meantime, I do know that Gleevec is capable of miracles.

Gleevec: Explanation

2008-12-14T22:42:00.002-05:00

I was talking with a friend about my previous entry about Gleevec, and found she’d come away with some confusion, an unintended interpretation. I’ll try to put my own understanding into better perspective and explain a bit more clearly.

Results of initial Gleevec testing with CML (Chronic Myeloid Leukemia) came as a surprise to researchers. Ten years ago they were only looking to verify its safety to test on people rather than its effectiveness; they weren’t expecting to find such high response rates in such early trials. But what they saw drove them to look at the patients more closely to see what was common about them. That’s when they discovered the “Philadelphia chromosome”, named for the lab where it was discovered. This chromosome malformation they had discovered led them to identify the first protein identified as a cancer-causing agent.

When they looked around at other cancers, they found similar reactions and high occurrence of the defective chromosome with GIST (Gastrointestinal Stromal Tumors). Soon after that, the FDA approved Gleevec for use with CML and GIST, making the drug commercially available.

In the meantime, other researchers in other types of cancers jumped on the bandwagon. Maybe they’d find a similar genetic mutation and the high response rates in their disciplines as well. Some of those other researchers, of course, dealt with melanoma.

There are experimental trials currently underway with melanoma to prove the concept. In order to get into such a trial, the drug company requires a four-week genetic workup to identify presence of the deformity. But the doctors on the battlefront have their own anecdotal evidence to identify who is most likely to be receptive to Gleevec treatment. My doctor and her geographically far-flung colleagues have independently observed that melanoma patients whose primary lesions start in two different ways tend to be the best candidates, while other, more “traditional” forms of skin lesions don’t usually respond. The responsive cancers start in moist places of the anatomy, or on the palms of hands and on the feet.

My doctor added her own 2-plus-2 and realized that I’d be an excellent candidate for Gleevec. She didn’t want us to wait four weeks for the drug company to come up their own verdict about me when her own intuition told her to go ahead. We were able to start me on the drug right away because it is commercially available.

Jewish penicillin

2008-12-13T22:11:00.005-05:00

Generations of Jewish mothers have believed that chicken soup has restorative powers. And if it doesn’t, so can it kill you?

My latest doses of the remedy have come by way of my ex. Last week he brought me a quart of wonton soup, a modern day, Chinese-American variation, and he laughed when he saw the way I guzzled and relished the delicious broth.

This evening he called as I was out picking up a prescription and informed me he’d just made a big pot of his own delicious version. Would I want to stop by for some on my way home?

I did. And it was truly wonderful. I had dinner of salad and chicken soup with him and his girlfriend. They treated me royally.

I need to say a few words about my ex.

Divorce isn’t easy… no kidding. I’ve never regretted ours, though it hasn’t always been easy in the last ten years since, or especially in the years leading up to it. But it gave both of us our lives back and allowed us to become better friends.

The past several months I’ve had some very serious problems to deal with and he has been a tremendous help to me. I had to come to grips with some of my own demons in order to ask for and fully get his attention, but once I did, he was there.

Most recently, he has been extremely concerned about my health, and helpful beyond anything I would have expected at less stressful times when it's easier to keep at arms length. He picks things up for me, brings me food, drives me places, and sits and keeps me company when he sees I’m ailing. He’s observant and smart, and knows firsthand what kind of distress I’ve been in, and he’s reacted empathetically. In short, he’s been terrific.

This should come as relief to some of you who have heard anecdotes about some of our less pleasant interactions. His behavior can leave people scratching their heads, but I’ve always believed in his basic decency (well, almost always). The past months, and the chicken soup, have brought that home to me very clearly!

Catch-up: More pain and tiredness at home

2008-12-12T22:19:00.002-05:00

Thursday morning I was still high from my infusion of steroid the day before. My back pain was greatly reduced, but I was very anemic, causing a push-me-pull-you kind of effect. I’d bend and reach and stand and everything seemed okay. Then I’d take half a dozen steps and collapse, winded, against a wall.

I was already scheduled for a blood transfusion this morning to address the anemia. I didn’t sleep well last night, or nearly long enough, so by the time I arrived at the Cancer Center, I was in such agony that we had to deal with the pain first before getting on with the transfusion.

Another cocktail of intravenous drugs: steroid, Dilaudid (said to be a Lenny Bruce favorite), anti-nausea, hydrating fluids, followed finally by two units of blood. I was in the Center all day, drifting and dozing and accepting the mix of fluids into my body.

Now that I’m home, I’m very much needing to sleep, but wanted to get some information up here first that I know some friends have been waiting to hear.

There will be more tomorrow….

Catch-up: Off chemotherapy

2008-12-12T21:32:00.002-05:00

“You’re not getting chemo today.”

For a variety of reasons, my doctor pulled the plug on this latest course of chemotherapy treatment. Wednesday’s blood labs showed low platelets again, which alone would have postponed this round of treatment, but in short, I haven’t tolerated it well at all, and it’s not working.

But that wasn’t the whole reason. My doctor was grinning.

“I was hit with divine inspiration. There’s a new drug. It’s experimental for melanoma and I can get you into the next round of study, but there’s a four week wait while they work up a genetic profile to see if you meet the criteria. I don’t want us to wait and we don’t have to. The drug has been approved for other forms of cancer, so it’s available commercially. I just wanted to talk to you about it first so I can have it overnighted to your house and you can start taking it tomorrow. I guarantee, by the time they can get the study done, we’ll know by your response if you fit the profile.”

She then proceeded to tell me about Gleevec.

Gleevec is not chemotherapy. It’s not toxic, has minimal side effects; it doesn’t cause you to lose your hair. It’s a drug that takes a different approach. Instead of targeting cancer cells and everything else in its path, it goes after specific proteins exhibiting a particular genetic mutation. A high correlation of response was initially noticed in patients with Chronic Myeloid Leukemia (CML) and certain gastrointestinal tumors (GIST), which tend to exhibit these defective proteins, the first case of proteins known to cause cancer.

Now here’s the kicker: studies are underway to find other cancers that exhibit the same type of genetic abnormality. In the case of most melanomas, Gleevec has no effect. But various independent studies have shown that there are a couple of forms of melanoma that start in “non-standard” areas, which do tend to have the defect. The first type is in moist areas of the anatomy, such as sinuses, mucosa, and vagina. The second type is when the primary lesion is on the palms of the hand and on the feet. If you remember, my initial lesion in 2002 was on the side of my heel!

My doctor’s excitement about this new drug is contagious. I took my first pill last night. There’s so much more to write about it, but I need to get some sleep tonight. Look for new posts tomorrow.

Catch-up: Doctor visit on 12/10

2008-12-12T20:28:00.004-05:00

So much has happened in the past couple of days, it feels like a week has passed since my last post, so I’ll probably have to break this up into multiple entries.

I was due to see my doctor on Wednesday for treatment and to discuss scan results. When she walked into the examination room, I was curled up on the table, asleep.

“This isn’t you,” she said, shaking her head.

“I’m exhausted all the time,” I explained. “and in pain.”

I told her about my experience with Advil the previous afternoon, how two little blue gel pills had done more to address my pain than the morphine I’d been taking for a week before.

“It’s obvious the pain is inflammatory. We can fix this.”

She had already included the usual dose of Decadron in my premeds, and she prescribed the same steroid for me to take in pill form at home on a daily basis. Steroids are longer acting and don't interfere with clotting, as ibuprofen can. When we begin to see reduced inflammation from the steroid, we can also start tapering back the Fentanyl patch dosage, since it's not a good idea to alter too many variables at once.

Also, Fentanyl is a strong, addictive, narcotic, and we’ve all read stories and seen movies about “cold turkey.”

So for now, we just add daily steroid.

Drugs

2008-12-09T21:00:00.003-05:00

The last few days have been more misery for me.

When I reported how much pain I was in, the doctor recommended I replace my anti-inflammatories with yet more narcotics. She gave me a prescription for a drug called MSIR; that’s Morphine Sulfate Immediate Release. I’ve been taking MSIR for about a week, and the pain didn’t seem any less. The more I took, the groggier I got, so I limited myself to one pill a day. Walking became more of a chore. I was exhausted, achy, and less and less able to function. But at least on one pill a day I was able to stay awake for six to eight hours at a stretch.

I was scared.

This evening, before my first nap of the day, I took two Advil. When I woke an hour later, my pain was greatly diminished and my head a whole lot clearer! What a relief to make this discovery. I knew I was reacting badly to the morphine, but I didn’t realize the extent to which it was robbing me of my vitality.

In a conversation with my ex earlier today he recommended that I not drive. He was concerned that my reflexes and reaction times were slow and that I was a danger to myself and others. Although upsetting, I had to agree with him. He offered to drive me to the train station for my doctor’s appointment in the morning and I sadly agreed to the arrangement. Post-nap, I now feel that my head is clear enough that by morning I’ll be able to drive myself!

I will, of course, discuss all this with my doctor. And I plan to stay away from morphine!

Aftermath

2008-12-04T17:35:00.001-05:00

By the time I got to Grand Central yesterday afternoon after leaving the client, I was Cinderella and my gown was starting to shred. By the time I got home I could barely walk again.

Per doctor’s orders, I increased the dose of my pain patch and got into bed at 7:30. I didn't take an anti-inflammatory before falling asleep, hoping the patch would do it by itself, but I woke during the night in a great deal of pain, so I took a Naproxen then. I was in pain a lot of the night, but managed to sleep until 10:30am when I woke up groggy and still in some pain after more than fourteen hours sleep!

My doctor says I probably overdid it.

The doctor’s admin just called to let me know she’d gotten the next scan approved and scheduled for tomorrow afternoon. She’s the greatest at getting things done!

So it’s been another lost day: naps, pain, lack of focus. I hope we can get to the bottom of this soon.

It worked

2008-12-03T18:32:00.003-05:00

I’m so grateful for the drugs I got yesterday; I couldn’t have gotten through today without them!

I got up really early to finish preparing materials for my class, and I was on my feet a good part of the day from 10am to 4pm, presenting new skills to a very mixed group of nearly twenty students, and walking around to help those who had trouble getting it. A lot of up-down-sit-standing. I’m tired and achy now, but not nearly as bad as I was a few days ago.

I'm "coming down" from the steroids, but I actually feel kind of high through the haze of tiredness; it feels so good to feel productive again!

Feeling some better

2008-12-02T18:13:00.002-05:00

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.

Lost a month

2008-12-01T18:05:00.001-05:00

I slept through most of November. Serious sleeping. Twelve hours a night plus another three to four hours of naps. The only place I could get close to comfortable was in bed. I’d get up and walk into the bathroom, my office, or downstairs to the kitchen and be completely winded. The effort to remain upright made me nauseous. Sometimes I just lay in bed listening to the radio. (But how many times can you hear the same sordid news stories without going crazy?!) I didn’t have the focus or concentration to do much of anything.

And I was in pain: lower back, shoulders, upper arms, thighs, and occasional shooting pains through my spine.

It was a lousy month, culminating in exhaustion throughout the Thanksgiving Day weekend.

There were good things about the weekend, of course. My daughters were home and we all shared quality time. I lay on the couch and gave directions while my younger daughter baked a wonderful pumpkin, cheese fondue appetizer for the holiday meal. My daughter drove us to New Jersey for a terrific meal and a day full of family, love, and warmth in my niece’s home. While others drank wine, I filled up on some of the best apple cider I’ve ever had, made by my younger daughter and her boyfriend with their antique cider press. Thanksgiving is my favorite holiday!

But by Sunday I was in tears. I’d expended more energy than I had in weeks and I was paying for it. I contacted my doctor via email and told her how I felt. I asked to come into the office on Tuesday for an infusion of steroids in order to get me through a client commitment on Wednesday.

“Sure,” she said when she called back, “and I want to have you scanned sooner, rather than later.”

I’d been scheduled for my next scan on December 31, but all of these unexplained symptoms were a surprise. Were they from the chemo? From the Fentanyl pain patch? From the melanoma? She’d been expecting me to feel better after my second infusion on November 12 but here I was, in pain and getting weaker and more listless. I could hear the concern in her voice.

So the plan is to go to the office for steroids and rehydrating fluids tomorrow, in order to shore me up for the client presentation on Wednesday.

In the meantime, I increased the dose of the pain patch last night and was pleased to find it made me feel better already. Well, that’s a little misleading. I got up in the middle of the night to go to the bathroom and was surprised at how little pain I felt. I wasn’t winded. All good, until I got to the bathroom and was overcome with nausea; I vomited before I had a chance to take an anti-nausea pill. In the morning I woke up nauseous again.

One step at a time.

Chemo sucks

2008-11-20T21:00:00.006-05:00

I had my second chemotherapy infusion on Tuesday. As always, I got an intravenous dose of steroids before the DTIC (Dacarbazine) and Carboplatin. The steroids keep me jazzed for about a day and a half, which is a good thing in this case, since I had to be onsite at a client in downtown Manhattan the next day.

Unfortunately, after the high comes a crash, along with flu-like symptoms, so once I got back from the city on Wednesday, I’ve done little more than sleep: 5:30 pm to 8:30 am, then a nap from 11 am to 3 pm. And, hard to believe, I’m ready for more sleep now.

The Fentanyl pain patch seems to be helping. My doctor initially prescribed a very low dose, so as not to make me stupid from grogginess. This time she increased it to handle the back pain more effectively. I’m sleeping better.

I asked my doctor what are the chances I’ll come back in three weeks and have low platelets again. “Not likely,” she said, since she reduced my chemo dosages significantly this time. For the first infusion she wanted to hit the new disease hard, so she gave me the maximum amount. It made for a rough month, including the anemia. This treatment should be a bit more tolerable.

We talked about my nearly complete lack of energy; climbing a flight of stairs or walking at my normal pace leaves me winded, for example. She recommended American Ginseng. Her other patients have reported good results in combating that chemo fatigue, so I’ve started taking that.

Before I left the examination room for the treatment floor, she reviewed my blood work lab report and was pleased with what she saw. One count in particular was down from 150 to 130; normal is 90. I don’t remember the component name, but it’s a measure of bone disease.

Side effects

2008-11-12T16:02:00.003-05:00

Last week my chemotherapy-fuzzied brain confused the dates and I told several people that I was having treatment on Wednesday. It was actually scheduled for today. But when I got into the examining room after my blood work, my doctor told me there’d be no treatment today either; my platelets were too low.

“It’s totally to be expected, a result of the Carboplatin;” which is one of the drugs I got three weeks ago. “You’ll be fine next week,” she said, “so we’ll reschedule you for then.”

We still had a chance to talk about how I’ve been feeling, and frankly, I’ve been feeling pretty lousy.

I’ve had a lot of back pain due to the bone metastases visible on my last scan. There’s also pain in my upper arms and thighs. The pain isn’t terrible by itself, but it’s enough to wake me at least two or three times a night. Whether I get back to sleep right away or not, the interruptions ensure that by morning I don’t feel rested.

I’ve been controlling the pain with pills; initially with Advil, which is pretty good but doesn’t last very long, and then with Naprosyn, which lasts longer but isn’t as effective. She prescribed a 72-hour pain patch that I’ll start using tonight. I should see results in about a day.

Once I’m not dealing with pain all the time, I’ll get better sleep and hopefully have more energy and better appetite. I knew I had lost a few pounds since my first treatment three weeks ago, but was surprised to find that it was a loss of seven pounds, not the two or three I expected.

This back pain, by the way, is a most distressing development. It’s the first time I’ve seen symptoms of disease, rather than simply side effects of harsh drugs. Whenever I become aware of the pain, I’m reminded of its etiology and I get ever more bummed. So maybe the patch will allow me to go longer periods without wondering where this is all headed.

I had a dream

2008-11-12T15:33:00.003-05:00

Once in a while I have very vivid dreams that I remember in whole when I wake up.

In some cases the symbolism is very obvious to me, as when my marriage was dissolving and I dreamed I pulled into the driveway of my house to see all my things being sold in a garage sale.

Or when I was a young woman and dreamed I was pedaling a tricycle through the Queens-Midtown Tunnel, pulling a wagon behind me with my parents sitting in it.

But Saturday night I had one of those dreams that seemed to be only fantasy, pure entertainment. In this dream, one of my computer friends invited me to join a group that was looking for a secluded spot to “do some coke.”

“I don’t want cocaine,” I told him, “but maybe someone has a joint.”

(Just for the record, my friends and I do not use cocaine, and I haven’t smoked dope in over thirty years, since it was “fashionable” in the seventies. As I said, fantasy.)

He thought my request was unlikely, but encouraged me to join the party anyway, so we all set off hiking up a mountain. We had a little trouble finding a quiet enough spot, since the mountain was being colonized by Hasidic Jews. There were little cabins and bigger bunkhouses everywhere we looked, and men in black with tall hats and peyes (facial sidelocks) walking around silently.

We finally found an isolated clearing and gathered close to consume the drugs. In short order, police arrived, the group scattered, and some were hauled off to jail.

The next day I ran into the same friend who originally extended the invitation and asked him, “Who got busted?”

“I can’t talk about it now,” he whispered mysteriously, after which I woke up.

That friend in the dream is someone I’ve known since the early ‘90’s, but it’s been nearly two years since I’ve seen or spoken with him at all. Before that we only had sporadic contact for a couple of years, and before that we co-authored a magazine column together for three years. No current contact in two years, but he reads my blog.

The day after the dream was Sunday. Imagine my surprise when I picked up the phone and that very same friend was on the other end of the line!

The reason I’m telling this story is to point out how connected I feel to so many people, even people I don’t see or have contact with in the “real world.” I know many of you who read my blog have been concerned about my most recent dark posts, and before that, a long period of no posts at all. I’ve heard from many of you, via various methods, expressing concern and hope and prayer and good thoughts. I want you to know how much that all means to me!

As I’ve said before, I’m not a religious person; I don’t pray myself. But I encourage all of you who do to keep it up. I accept donations of good thoughts in any form they come. Everyone has their own way of getting it across and I definitely feel touched by it all.

My life is rough right now, but I feel and very much need your support. It invigorates me at a time when chemotherapy is doing its damnedest to sap my energy.

And I love you for it.

MRI

2008-10-31T13:15:00.002-04:00

I had the MRI on my head and neck last night. I didn’t know what to hope for: that it would show something to explain the numbness in my jaw, or that it wouldn’t show anything. Either outcome seemed unsettling.

I just heard from my doctor with the results: both scans are fine! She can’t explain the numbness, but it is not tumor in my brain or neck!

I am extremely relieved! I had really blocked off thinking about it, so I was surprised at how intensely relieved I feel hearing this news… or rather, lack of news.

I don’t like not knowing, but in this case knowing could signal imminent disaster.

The phone call

2008-10-30T22:47:00.003-04:00

I got the call today that I’ve been dreading for a year or more.

My main client called and said he’s been ordered to cut back expenses even further. They’ve had to let people go, and they can no longer afford me. It’s a very sad state of affairs. I really like the gig, I’ve done good work with them, and of course, I need to keep working.

The timing really sucks!

Toothache

2008-10-28T22:13:00.003-04:00

Last week sometime I started feeling a strange sensation around one of my teeth. It’s in a part of my mouth that my dentist has been keeping an eye on, since some of the work is pretty old and can potentially break down. The new sensation isn’t exactly pain, not really a toothache, but the gum and lip in front of that tooth are numb. It feels like Novocain wearing off. It’s pretty uncomfortable, and since I don’t have much feeling there, I tend to bite it while I’m eating, making my lip sore and swollen.

I went to the dentist first thing Monday morning so he could fix me up. Only problem, he couldn’t find anything wrong! The tooth in question already has a root canal, and there are no signs of cracks or abscess. My description sounds to him like there’s something impinging on a main nerve, but he couldn’t see anything in the x-rays and didn’t want to just start digging around.

We called my doctor, who’s now puzzling over it too. Can it be from new lesions in my neck or spine? She didn’t see anything on the PET scan that would cause this, but she can’t explain it either. So she’s going to schedule me for an MRI of my head and neck to try to get more information: yet another medical procedure to attend to.

Life is hard

2008-10-22T23:00:00.000-04:00

Many of you have contacted me in the last three months since my last blog post. I’ve gotten emails and phone calls asking tentatively if I’m all right.

I appreciate the concern shown by you, my dear friends. I feel guilty for having set up an expectation with this blog and then abruptly abandoning it when life got hard for me. I haven’t wanted to talk about what seems to me to be ugly and sordid. My reputation is sullied in my own eyes, and I haven’t wanted to share that. I don’t feel good about myself. I’ve been depressed.

To set the record straight, my health is good. I struggled with side effects of the immunotherapy through the summer. The itching of early July faded into pancreatitis that lasted about six weeks. Pancreatitis is a bitch. I lost most of my interest in food, and whether I ate or not, I was dogged by bouts of nausea and general queasiness. I lost some weight and was weak and tired. From July through the middle of September, my throat was congested, probably from post-nasal drip. I coughed and cleared my throat constantly for weeks. It disappeared as suddenly as it showed up. By the time it left I felt my energy returning. I started exercising again, tackling paperwork I hadn’t been able to address in a year, and pushing myself to get things done. As I became more productive, my stress over my financial problems subsided a bit. Things were looking up.

And then came today, my latest doctor’s appointment to discuss the PET scan I had on Monday.

It was my first appointment since August. I was happy to see her and started babbling small talk when she entered the office. The look on her face stopped me short.

“What is it?” I asked. “The scan?”

“Yes.” She took time to compose herself.

“How bad?”

“The pulmonary tumors have increased in size and number. The disease has spread. There are new tumors in your liver, possibly your bowel, and your spine.”

“What?! How can that happen?”

“I don’t know. I hate melanoma.” This wasn’t the first time I’d heard her say that. “It’s vicious, aggressive, and unpredictable. When the radiologist called last night and said she had bad news, I had to stop and think who’d been scanned. I knew you were scheduled, but I was completely unprepared for bad news about you. I was so upset, wondering how I was going to tell you, that I couldn’t sleep.”

“I’ve had patients on immunotherapy who looked very good and their scans were good, so we continued the treatment. I’ve had patients who looked very bad and their scans were bad, so we switched them to something else. And I’ve had a very few, like you, who looked very good, but their scans were bad. In those three cases, I took them off immunotherapy immediately and put them on chemo, which is what I’m going to do with you too. In all three cases they achieved complete remission. That’s no guarantee; three is a very small sample. But it’s possible the immunotherapy sets up your immune system to work with the chemotherapy and make it more effective.”

“So the treatment I’m scheduled for today will be chemotherapy, not Ipilimumab?” I asked.

“It’s possible that continuing with Ipi would eventually turn things around by itself, but I don’t want to take that chance.”

“Will I lose my hair? I’ve rather come to enjoy these white curls.”

“You won’t lose your hair. You’ll have three treatments, three weeks apart, then another scan.”

I saw her eyes tearing up. “It’s not your fault,” I said.

She put her arms around me and said. “It’s just that I like you so damn much.”

Latest results

2008-07-30T21:00:00.001-04:00

“The scan is what we expected,” my doctor said when she entered the exam room. “No new disease, but the tumors that are there are lit up. That’s because they’re inflamed."

She was referring to the PET portion of the scan which tracks the radioactive glucose injected into my body beforehand. Malignant cells gobble up the glucose more readily than regular cells, so they show up as points of light in the pictures.

"If it were up to me, I wouldn’t do the twelve-week scan at all, just the one at twenty-four weeks. But the FDA requires it.”

My side effects over the past three weeks have been nearly unbearable. The itch and rash are gone, for the most part, but I’ve still got pancreatitis, so I continue to have bouts of nausea and vomiting, even though the anti-nausea pills I take control my queasiness during the day. I also sleep a lot, feel very weak, and have extremely low energy when awake. When I reported the symptoms to my doctor, she sent me to the treatment floor for an infusion of steroid to boost my energy level.

In fact, from the laundry list I presented, she suspects hypothyroidism as well as pancreatitis, so she also ordered more blood tests, commenting that the immunotherapy tends to unleash certain elements into the blood that cause “little itises”, and these inflamed organs can cause lots of uncomfortable symptoms. She’ll call me with results of the tests, and plan to see me in a month to make sure things are under control by then. We’ll be in touch via email and I’ll go in to see her sooner if things don’t clear up by next week.

It’s unnerving for me to watch this process continue. I would certainly like to be disease-free. I’d like to stop having side effects from drugs that address one issue while compromising another. I’d like to forget about the medicine-balancing-act that attempts to keep it all under control.

On the other hand, the disease has not progressed in over a year. That is certainly good news. It makes the condition manageable. At that slow rate, it gives the immunotherapy a chance to settle in and work over the long term.

No easy routes

2008-07-24T23:25:00.003-04:00

I make it a point not to write about other people in my blog. It is, after all, my blog and they didn’t ask to be included. I’m making this exception because I already mentioned my ex in a recent post, it’s integral to what I’m going through, and he never reads my blog anyway.

For those of you who know of my difficulties with my ex and who were pleased to see he’s been helping me, know that there are no easy routes or straight lines. I got into a hassle with him yesterday, ran aground of the issues that undermined our nearly twenty-five year marriage. It’s no surprise, of course.

My ex’s most generous impulses are inevitably undermined by his stingy follow through. Of course, he doesn’t see it that way, doesn’t see himself as stingy or withholding. He’d call it self-protection, preservation of his resources to ensure his own care before he can consider distributing them to others. This always drove me crazy when we were married. I’d count on his implied generosity which rarely made it past the suggestion stage. I’d end up feeling cheated, denied. He’d sense my resentment and hold his valuables closer to himself lest they be wrenched from him against his will. Needless to say, the marriage suffered. There was a huge amount of emotion bound into this difference of expectations. Toward the end of our time living together, it felt like we were speaking different languages. It became impossible to communicate.

Accordingly, what he does give freely is advice, much of it unsolicited. He constantly scours various sources of media for more and more facts that support his outlook and opinions. He loves to send people articles presenting some unpopular idea or other that he holds dear. His knowledge is the one thing he’s not afraid to lose, so he shares it readily.

I am deeply mistrustful of “facts” which strike me as lies presented selectively to uphold whatever one wants them to mean. I tend to see at least two sides to every issue, so my approach, on the other hand, is to base decisions on emotion and instinct. He characterizes this process as denial.

It’s been eleven years since we separated, ten years since the divorce. Time has rounded some of the sharp edges that threatened to slash each other to pieces. But the differences are still there, still capable of fueling explosions of baggage where dirty underwear flies in all directions.

We got into an argument yesterday over this very sort of thing. He had previously come up with an idea for loaning me money collateralized by my life insurance. In other words, I’d add him as a partial beneficiary on the policy and he’d loan me that portion of the death benefit. That seemed a logical and welcome solution to my immediate crisis. It would get me through the short term, allow me to pay my mortgage and other essential bills, and buy me time to implement more long term solutions to my situation. And let’s face it, all solutions take time to get up to speed and return rewards.

But he seems to have reconsidered this option. It now strikes him as ghoulish. He can’t foresee me paying him back before I die and doesn’t want repayment contingent on my death. Plus, he fears that such a solution would introduce unwelcome emotional complications with my daughters.

I’m caught in a bind. I appreciate the help he’s given me in terms of figuring out what needs to be done. But I also need a way to finance the next few weeks while I make my way over hot coals to get to a place of more income and fewer expenses. He will help me with some money, but far less than I had hoped for, and with many more strings attached.

This process is exhausting and extremely stressful. I feel like I’m getting an ulcer.

Still queasy

2008-07-23T09:15:00.002-04:00

The bouts of nausea continue. I wake up queasy every morning and sometime during the day, usually at night, am overcome with an urge to vomit. It sometimes passes without incident, but it’s uncomfortable nonetheless.

My doctor says that avoiding fatty foods is the most important factor, but the only thing that fixes this is “tincture of time.” In the meantime, she suggested I take an anti-nausea pill in the morning to control the queasiness during the day. I started doing so several days ago, and the drug helps. I still get nauseous out of the blue. Last night it woke me from a deep sleep at 2 am.

The good news is I’ve lost some weight, about five pounds in the last two weeks. Believe me, it’s a lousy way to diet!

Looking up

2008-07-22T22:31:00.002-04:00

Some of my most recent posts are pretty bleak. At least I was feeling pretty bleak when I wrote them. I’m not free of the problems that led me to the overwhelming situation I’m in, but I’ve gotten some good advice in the past two weeks and finally have some plans in motion to address the issues.

My top priority is to increase my income and reduce expenses so I can stay in my house. Toward that end, I’ve made an arrangement with my NYC client to spend two days onsite instead of one. Even with the discount I offered them, this raises my income substantially. Plus it leaves me free for other billable work and essential tasks.

One of my friends directed a potential new client my way (thank you Cathy!), and I’ve set up a job interview with a consulting firm near my home/office that’s looking for consultants whose skills combine modern and ancient technologies. My daughter found the ad for this position on the popular free bulletin board, Craigslist, and thought I might qualify even though she didn’t know what COBOL is!

I’ve accepted that I can (must!) do something I never wanted to consider before: rent out a room in my house. Over the next few weeks I’ll rearrange a couple of rooms to make a bedroom available for someone else and start looking for a responsible professional to rent to.

Yesterday I met with a CPA who gave me excellent advice about how to discharge some of the massive unsecured debt I’ve accumulated, and how to deal with two ill-timed and devastating real estate investments that have added to the burden. I will probably need to spend hours on the phone, but if I get to the right people, I may be able to handle some of the problems myself, without having to consider bankruptcy.

I’m working on it. And I have an unexpected ally: my ex-husband.

I went to him reluctantly because a year ago I asked him for financial help and he turned me down. Not only did he dismiss the idea completely, but he said some insensitive things at the time that insulted and stung me. Not because he doesn’t care what happens to me, but because of his own limitations, as I slowly came to accept. This time is different. I’m desperate and he recognizes it. He’s offered help in a form I can use. He’s helping me set priorities and work through the details, things he's good at. And he’ll provide some stopgap financial aid in a way he can live with. He’s the ear and the feedback I need right now, and things are indeed looking up.

Queasy

2008-07-15T11:56:00.003-04:00

The last few days I’ve had an on-again-off-again ache in my stomach. It feels acidic, ulcer-like. Sometimes it swells and blooms into a wave of nausea. Two days ago it grew very strong and I vomited most of the meal I’d just eaten. Last night it happened again several hours after dinner. I didn’t have much in my stomach at that point, so I stood over the toilet drooling and dry-heaving until it passed. In both instances, it passed pretty quickly.

Big question: Is it the drugs or is it the stress? (Or maybe the cabbage salad I’d eaten both days?)

Footnote: I met with my doctor earlier and told her about the vomiting. She had my latest lab report in front of her and was about to ask me if I’ve been nauseous. The labs showed an elevated level of pancreatic enzymes, “a touch of pancreatitis” which can cause nausea, especially from fatty foods.

In addition to the cabbage salad, I had spare ribs both days. I cook them on the outdoor grill with nothing on them, so a lot of the fat drips off, but they are still a fatty cut of meat.

Mystery solved.

I’m at the Cancer Center for the last of my four initial immunotherapy treatments. In three weeks I’ll have a scan, and see my doctor a couple of days later. Then I’ll be free of medical appointments for three whole months!

In late October I’ll have another, more meaningful scan, and a maintenance infusion of Ipilimumab, and that will be the schedule from then on: treatment and scan every three months as long as my doctor and I want to keep it going.

In truth, I feel very good. I like the idea that my own immune system is doing the heavy lifting; I’m not being force-fed poisons that kill everything in sight and suppress my immune system in the process. Chemotherapy is hard to endure; this treatment is much easier on the system and much easier to live with.

Chance encounter

2008-07-13T10:25:00.002-04:00

I was at the Cancer Center on Friday for blood work and a urinalysis. After the phlebotomist drew blood, he handed me a plastic cup and I went off to the bathroom to fill it. I sat down, my mind wandered, and all of a sudden I realized I was still holding the cup, but I’d peed in the toilet!

I then had to sit around drinking water and waiting to fill my bladder again. As a result, I missed my train back to Westchester by a couple of minutes, and trains only run once an hour in the middle of the day. So I found a seat in Grand Central’s food court to catch up on some client work, berating myself for such a boneheaded move, until….

I caught sight out of the corner of my eye of someone carrying a bicycle downstairs, headed toward me. It looked like the one my client rides to the office, I thought. Then I looked at the person behind the bike and sure enough, it was him.

We chatted for a few minutes, and before he ran to catch his train I said, “Let me leave you with an idea: Is there any way I can put in more hours for you? The last year has been hard on me with all the cancer stuff I’ve had to attend to. I need to increase my income."

“You mean an arrangement to work twenty hours or so for a fixed amount? I’d really like that,” he said. “I could offload a lot of stuff to you and have more time to work on the things I’m supposed to be doing.”

His problem is that the company where he heads the small IT department has invested in a custom web-based project that’s overrun its time and budget and hasn’t started making money yet. The company's owner has instructed everyone to scale back expenses.

“Let’s talk about it when you come in next week. I’d like to figure a way to sell the idea.”

I was so jazzed when he left. The encounter felt like a sign. I’ve been going to this client site only once a week lately. I like going there. The man I work with, the one with the bicycle, is bright, an eager learner; I've taught him a lot about Visual FoxPro and he likes what I do for them. But once a week means I have to pick up dropped threads of thought every time I go back. The consistency of twenty hours would make me more valuable to them. And it would make bicycle-man more valuable too; it would free him up to be a more effective IT visionary.

Plus, it would nearly triple my billable hours there. It would go a long way toward covering the expenses I’ve been struggling with.

I hope we can work this out.

Disrupted patterns

2008-07-12T21:15:00.002-04:00

I’ve always been a good sleeper; rarely had any trouble falling asleep, and mostly slept through the night. These are exceptional times.

In the last year I’ve had many instances of waking at 4am or so. The thoughts and anxieties that wake me make it difficult to get back to sleep once I’ve had four or five hours sleep.

Lately I’ve gotten into a terrible pattern. It’s almost every other night that I can’t fall asleep at all. Sometimes I get up and read or try to work. Or I just lie awake listening to radio news (sleep-inducing noise) until about 4am. The next night I’m so exhausted I sleep through the night. But being depressed, I then may sleep for ten or more hours. The next night it starts again: I can’t fall asleep.

I’ve always been an avid eater. I’ve heard that some people lose their appetite when depressed, but that was never me. I’ve mostly used food to curb anxiety.

Not now. Now, food holds little appeal. I eat less and rarely get pleasure from it. The only satisfaction comes from knowing I made it through another day and managed to feed myself.

Stress may be more devastating than cancer. I wonder what it’s doing to my health.

Itchy

2008-07-10T14:31:00.003-04:00

It’s been a bad month. I haven’t posted to the blog and some of you have gotten in touch with me when you noticed. It’s just been a bad month.

It took a couple of weeks to shake the virus, fever, and fatigue from the beginning of June, but it’s gone and physically I’m okay.

My new treatment comes with rash and itch, particularly on my arms, but sometimes also on my neck, thighs, shins, and feet as well. The rash looks a bit like the goose bumps you get when you’re cold, not red until I scratch myself raw. The itch appears to be independent and comes and goes from somewhere underneath my skin. I try to keep my hands away, but once I start scratching, it feels like I’ll have to rip my skin off to get at it. Sometimes I wake at night and find myself scratching; it’s a bit easier to control when I’m awake since I always have lotions, gels, powders, and creams nearby. The topical stuff works for awhile.

But that’s just the physical. I have much bigger, more humiliating problems that make me want to hide and stay away from everyone. Cancer and the economy have taken their toll on me. I’m facing a devastating financial meltdown that has me terrified, extremely stressed, and yes, depressed.

I spoke with a financial counselor yesterday. He pointed out the obvious, what I’ve been avoiding for months. My income simply doesn’t cover my expenses, let alone pay back the greater and greater debt I’ve incurred attempting to keep afloat. He advised me to contact a bankruptcy lawyer familiar with the regulations in my state in order to explore my options. I will do that. However, in my readings about bankruptcy and discussion with the counselor, I’m concerned that following that route will introduce as many or more problems as it promises to solve. Without going into long, drawn-out detail, my income, though insufficient to cover my basic expenses, may be more than the law allows for me to qualify for bankruptcy relief.

I feel terrible. I feel like a failure. Feeling like a failure is counter-productive, at best.

This is a very difficult post for me to write and make public. People I’ve confided my situation to keep reminding me I’m a survivor; they say I’ll get through this. That may be, but for now I feel like I’m being flushed down a drain. I have more energy than I’ve had for most of the past year, but now I need to use that energy to figure out whether and where and how to move before I lose my house outright. It’s particularly difficult to go through this crisis without a partner.

Encore

2008-06-09T21:03:00.002-04:00

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

2008-06-04T11:42:00.005-04:00

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.

A life measured in Cuisinarts

2008-06-02T19:46:00.003-04:00

As you may know, I'm currently enrolled in my second Gotham Writers' Workshop class; I started Memoir Writing at the end of April and I'm loving the experience! My latest homework piece is about something that happened just last week. It's a bit long, so I'll forgive you if you don't read to the end. But if you do find it interesting, know that I'm posting it here as a thank you gift for all who have encouraged me to write. The assignment was to write about a mundane task while thinking about something else...

~ ~ ~

I hear the familiar rumble of the garage door opening as I place the food processor on the counter and plug it into the wall socket. The act sparks a memory, as it always does, of my first Cuisinart nearly thirty years ago at a time when such machines were the new, exotic tool-of-choice for a growing population of food-sophisticates. It was a gift for something I can’t recall: Mother’s Day, birthday, Another-day-of-being-in-love Day.

“I’ve wanted one for so long. I love it,” I gushed. “Maybe someday you’ll meet a man who’ll buy you one.” I made the ridiculous comment to my daughter who looked on dispassionately.

“I’ll buy my own,” she retorted, putting me in my place and glancing with scorn at the gifter, her soon-to-be stepfather. At nine years old, she was more of a feminist than I was!

That machine went on to prepare a huge number of meals, both festive and mundane. Years later I gave it to my daughter after repairing its burned out motor. The new Cuisinart I got to replace it didn’t log nearly as many hours. My marriage was deteriorating by then and I lost interest in cooking, perhaps as a symbolic reflection of the bigger picture. Later on, I was happy to leave that second machine behind in the detritus of divorce. I was looking forward to a new life, a new home, a new Cusinart; and this one I’d buy myself.

My daughter enters the kitchen from the garage and we hug. The potatoes are washed and cubed; the onion, egg, and flour are all laid out, ready to combine into my favorite comfort food. This daughter, now approaching twenty-five, is the product of that second marriage (and first Cuisinart). She has just flown in from the west coast and we will have a brief visit together before she heads off to visit her boyfriend in Pennsylvania.

“I’m making potato pancakes.”

“Latkes, yum. Do you have applesauce?”

“No, but there’s sour cream in the refrigerator.”

You wouldn’t know from the nonchalance of the conversation that we haven’t seen each other in six months. It’s always the same with this daughter: she walks in as if she’s never been away. Her life has taken its own direction, but her energy instantly fills the house. Even when she was in high school, when she and her friends drove themselves everywhere and every minute not studying was filled with social gatherings; even then, her essence warmed the house though her physical presence was often elsewhere.

“When I was in high school, I grated everything by hand," I mused. "That was the only way to do it then. The onions always made me cry, and little pieces of skin usually found their way into the batter. I’d try to grate down to the last little bit and my knuckles invariably got in the way.”

“Yewww.” Is she sympathizing with my long ago injury, or expressing vegetarian distaste?

By this time the pancakes are sizzling in the cast iron frying pan I’ve had forever. I stare across the table at her beautiful face and see my features accented by her father’s coloring: dark curly hair and dark, sparkling eyes. It’s an exotic combination that fooled people into thinking she looked like him, but I always knew better. When I got tired of verbally pointing out the similarities between us, I laid out proof in the form of a collage: three pictures, three toddlers – my daughter, my husband, and me – all around two years old and looking very much like siblings.

It took many years to unravel so much overlapping sameness into three such distinct lives. My husband and I had been together for nearly twenty-five years and my daughter was just starting high school when we finally decided to divorce. He wanted the house and I wanted my life, so I bought a nearby townhouse and set out to start over. My daughter devised a schedule where she would spend half of each week in either house, and insisted we adhere to it religiously. She and I fashioned my new house into a home together and refrained from introducing her father into it. It was the same when she was with him; she needed to keep us physically divided in order to process the emotional split, even though he and I remained co-parents and even friends.

Every stage of life has its own challenges and rewards, but that period when the separation was new and I wasn’t yet an empty-nester was and remains very special to me. My career blossomed, my relationships with both my daughters flourished, and my sense of independence became a source of joy for me as I set out to try new things. Life has become more difficult since then – no straight lines, I keep reminding myself, but sometimes I wonder if I can continue to remain up to the challenge.

“Thanks for the pancakes Mom. They were delicious.”

“Have a safe trip sweetie. Hugs to Luke,” I say. “I miss you already,” I think, as she drives off, leaving behind a swirl of years in her wake and tears welling up in my eyes.

Interview

2008-05-30T22:04:00.001-04:00

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!

Trial run

2008-05-26T20:36:00.003-04:00

I did something new this weekend. I went to a craft fair in Massachusetts with my friend, the gallery-owner. That’s not the new part. I’ve gone to several such events with her, and many more on my own. It was a perfect day for it, one of those glorious spring days you wish could last throughout the year. She picked out things for her store and I window-shopped.

The new part is that I went wigless.

I’ve been thinking about my hair a lot, now that it looks like I may keep it with this new treatment. It’s grown back to about the length it was last Thanksgiving, which is to say, it’s just barely long enough to cover my head. I’ve been hoping for it to grow in curly, but it’s still too early to tell if it will. As before, it’s completely white, and not quite a hairdo. It needs another month or so before it will look “intentional.”

I have taken off my wig in the company of friends before. It’s easy with people I trust and so much more comfortable. I figured that going wigless among strangers would be a good next test for me. And I didn’t feel uncomfortable or self-conscious about it at all, even when we ran into people we knew. In fact, the only comments were compliments.

As with all things new and fearsome, the anticipation was much worse than the actuality. Self-consciousness is certainly self-defeating! Why should the prospect of appearing in public in a different guise upset me as it does? I can’t answer that except to say that if this were easy for me, I’d have to be a different person.

The final frontier will be going to my client, where I’ve been working onsite about once a week for the past couple of years. I’ll have to mull it over a while longer before I show up there in the buff, so to speak.

On a new course

2008-05-16T11:10:00.003-04:00

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!

More fun with words

2008-04-24T22:26:00.002-04:00

I commented to a friend, as I did here in my last blog post, that the new drug I’ll be taking has a name I can’t begin to pronounce: Ipilimumab. My friend happens to be a doctor and he said, “The MABs are monoclonal antibodies.” That was a term I’d heard my doctor use, but it didn’t occur to me until he said it that the drug’s name incorporates an acronym.

I still don’t know how to pronounce Ipilimumab, but it comforts my brain to know that its derivation has some meaning, that it’s not simply marketing gibberish.

New treatment

2008-04-23T08:27:00.003-04:00

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….

Follow-up

2008-04-14T10:12:00.002-04:00

Walking toward the hospital yesterday, I noticed an awning that read “Pete’s Sake.” What an odd name for a Japanese restaurant, I thought. As I got closer I noticed it wasn’t a Japanese restaurant at all. It was an Irish pub... named “For Pete’s Sake.” Oh dear.

I was on my way to the hospital to visit my sister, whose recent, terribly invasive surgery went very well. But it didn’t end there with medical success. My sister is tough, determined, and focused. In the ten days since her surgery I’ve seen her go from groggy, in bed on her back, to achieving all the rehab goals that will allow her to leave the hospital shortly. Every day her voice is stronger; I could hear that on the phone. But to see her physical progress is truly amazing.

Initially, she couldn’t do more than stand and walk a few steps in place with the physical therapist. It was painful to watch those first attempts to get in and out of bed while someone held her legs. Now she climbs in and out of bed on her own. She periodically grabs her walker and tours the halls of the unit without prompting or assistance. She's learning to master steps and walking with a cane. She sits in a chair and laughs with her visitors. She even took a shower by herself!

I know there are those of you who think of me as a “tough old broad.” But you should see my sister; she is truly an inspiration!

For my sister

2008-04-01T21:42:00.002-04:00

My sister is scheduled to have major surgery on Thursday. She’s undergone this procedure before, so she knows what she’s in for. She put it off as long as she could, weighing the misery of the anticipated surgery against the chronic back pain it will address. But the time has come and she’s nervous, preoccupied, and upset by the prospect.

My relationship with my sister has taken various twists and turns through the course of our lives, but most recently, I'm aware of how precious she really is. We’ve put a lot of our ancient competitiveness behind us, and are able to accept each other more readily than ever. I don’t know why it took so long, but this stage is a treasure nonetheless.

My head is filled with thoughts about her coming ordeal, and my heart goes out to her.

Another treatment

2008-03-31T09:30:00.003-04:00

I’m on my way into the City for yet another infusion of Abraxane. This is the part of the cycle that feels most like real chemotherapy. I mean, it’s all chemotherapy of course, including the nightly Temodar pills, the symptom management, and the daily entries in my drug diary. But this involves bags of intravenous drugs and most of a day in the Cancer Center.

I have clear, definable reactions to the Abraxane, in fact to the whole treatment cocktail: Pepcid, Kytril, Decadron; I know what to expect for the next few days in terms of my sense of taste, my energy, my hair, and my digestive system. At other times in the cycle, I can’t differentiate what is “reaction” from what is simply another ache, pain, or bodily expression of living and aging.

I’ve written about this part of the cycle before. Maybe I choose the topic because it’s easy to identify, easy to define, and therefore, easy to live with.

In any case, I’m halfway through the fifth treatment cycle. There are two more weeks of Temodar pills to take and on April 21st I’ll have another scan that promises to be very telling. It will either resume improving from where the last scan stalled, or it will continue along in plateau mode. It could mean changing the course of treatment if there is no further improvement, a development I don’t like to think about, though I can’t seem to help it. Currently, this treatment juncture is always near the surface of my mind.

Tingly toes and fuzzy brain

2008-03-28T18:24:00.003-04:00

A couple of months ago one of the treatment nurses asked me if I’d been experiencing neuropathy, tingling in the extremities from irritated nerves. At the time I wasn’t aware that this was a side effect of the drugs I’m taking. But I did have such sensations, and since that time I’ve noticed that the condition is nearly constant. Apparently, it can become severe enough that patients hurt themselves because they can’t feel their feet; they trip, fall, burn themselves in the shower, step on sharp objects. I’m nowhere near that point, but I am aware of the sensation most of the time.

At the other end of my anatomy, my head is giving me troubles too. It’s not physiological. At least, it’s not anything that shows up on my scans. My mood is decidedly down, my focus is off. I feel like I’m caught up in a giant Ponzi scheme that’s spiraling out of control; I’m continually preoccupied with my physical and financial health to the point where it disturbs my sleep. I don’t have enough work to keep my plate full, but I also don’t have the energy to market for new prospects. I'm at once hyper aware and trapped in a fog; it's all very worrisome.

I discussed this with my doctor and nurses at last Monday’s appointment. They suggested I might be depressed, (a distinct possibility given my family history), and prescribed an anti-depressant. I was reluctant to add a new medication into the mix, but decided to give it a shot and started taking Effexor the next day. It’s probably too soon to judge its effect on my mood since anti-depressants work in a cumulative fashion that can take a couple of weeks to gear up, but I’ve definitely noticed other effects that may or may not be from the new meds; things like dry-mouth, ringing in my ears, increased energy and agitation during sleep. I’ve been waking up two to three hours before the alarm every morning and sometimes can’t get back to sleep.

One of the most disturbing things about this cancer trip I’m on is that I’ve lost touch with my body and its functions. I used to pride myself on knowing what I was feeling and why. Starting with the day the diagnosis fell from the sky and crashed into my world, nothing feels normal. Symptoms come and go without announcing their genesis. Much as I love and trust my medical team, their response tends to be one of throwing more drugs at the problems. That’s not a surprise, given their training and perspective, but it leaves me feeling further and further from my self.

The new dyslexia

2008-03-19T22:48:00.002-04:00

I saw a poster near a bus stop this evening for a very old animated movie, 101 Dalmatians. But to my confusion and surprise, I didn’t see a number in the title, I saw LOL – laughing out loud.

My favorite transformed words of all time were posted along a twisty highway near my house. The sign said “Survey Crews Ahead” and I read “Screwy Curves Ahead”.

The mind is such a jokester!

Newsworthy?

2008-03-18T19:36:00.003-04:00

Our newly sworn in governor, David Paterson, in office less than twenty-four hours, was already dishing details of his sex life! The eager news hounds lapped up the fact that both he and his wife indulged in extra-marital affairs at a time when it seemed their marriage was headed for failure.

These two people have worked through their troubles, repaired their relationship, and reconciled. Having been married myself, I know this healing process can take monumental efforts of forgiveness and humility. But soul-searching and growth doesn’t make news; the comfort they sought in others when they couldn’t get it from each other does. David Paterson knows that secrets equate to dirt, so he offered up the information in a proactive press conference, before it became an issue, to fend off snoops intending to dig surprises out of his closet.

While I’m glad the governor appears to be an open and honest person, this move strikes me as naïve and, well, icky. The details of his wounded marriage are simply none of my business. I’m not sure I like his instincts; I’d much prefer to see him maintain the boundaries of his private life without inviting the press in. Which is much easier said than done, I’m sure. Just look at the many different ways celebrities handle being in the spotlight.

The only important question is: can he do his job?

Bagpipes in Grand Central

2008-03-17T14:49:00.002-04:00

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.

What goes around comes around

2008-03-11T15:17:00.003-04:00

New York’s governor has encountered a life altering event. Mr. Goody Two-shoes, or as he prefers to call himself, Mr. Clean, or Sheriff of Wall Street, has gotten himself caught in a moral bear trap. He was identified on tape setting up a tryst last month with an expensive call girl. This was not the first time; he said things indicating he is a repeat customer.

Eliot Spitzer is a man who set out to eliminate corruption in his current post as governor and previous position as New York’s attorney general. Whatever good he accomplished came at the high price of his holier-than-thou attitude. His campaigns to ensnare Wall Street transgressors frequently took the form of personal attack.

Immediately after the disclosure, the Governor issued a vague public apology to his family and constituency. He didn’t say what he was apologizing for, only that it was a private matter and he needed time alone with his family to work through it. The implication was that the issue is the sex scandal and the obvious victims are his humiliated wife and daughters.

But sex is not the issue. I personally couldn’t care less if this immature man gets his kicks from cheap (okay, expensive), empty, pay-as-you-go sexual encounters. That certainly makes a statement about his maturity and character, but he’s right, it’s a private matter; he privately chose that degrading form of expression, a highly self-destructive course of action in this case.

What is the issue then? In my opinion, it’s about his ego. In his quest for power and recognition, he broached all boundaries set up by others and pierced their public displays of propriety. In proving them culpable, one expects Spitzer to hold himself to the higher moral standard he demands of others. The surprise is he has set himself above the law, in fact exempted himself from it. He placed himself above the morality he publicly held dear. He lived a life of hypocrisy.

"He has to step down. No one will stand with him," said Rep. Peter King, a Republican from Long Island. "I never try to take advantage or gloat over a personal tragedy. However, this is different. This is a guy who is so self-righteous, and so unforgiving."

I found this quote on the internet amid all the reporting and speculating about Spitzer’s sex life and possible illegal doings. Peter King got to the heart of the matter. It was my first thought also on hearing the news: How can anyone in Albany continue to work with this man knowing what a hypocrite he is?

One further thought: I know from personal experience that life can change in an instant. It happened to me with my diagnosis last June. It happened to Eliot Spitzer earlier this week. His situation has been brewing quietly for many months, as mine was also. Maybe either one of us could have exerted more control at certain times to keep from getting into such deep trouble. Or maybe both events were inevitable, given the personalities. All I know is that once in this position, it’s terrifying. You look out over a canyon you can easily fall into, and it takes all your strength to keep from slipping at the edge. You wake up sweating in the night, wishing you could take back the last few moments. But there are no do-overs. We just have to keep going.

On some level it’s gratifying to see that the rules of human behavior apply even to the most powerful, living the most perfectly crafted lives. But I can’t help it; much as I dislike the man and his behavior, I feel very sorry for him.

Too much media

2008-03-11T10:00:00.001-04:00

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

2008-03-10T18:52:00.003-04:00

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!

People watching

2008-03-10T17:36:00.002-04:00

I walked quickly up Park Avenue, in stride with a woman dressed in an expensive sweat suit. I was hurrying to catch a train; she was hurrying to dry her nails. Her bright red, newly manicured fingers were outstretched, even as she carried a tiny shopping bag that probably held her keys and wallet and glasses. She’d done this before; she knew how to prepare. Nothing fancy; it was a bag she could use to carry essentials without having to dig around in a small, enclosed compartment that would ruin her paint.

She was also hurrying because she was cold. It was 40° and she was nearly barefoot! It was apparent she’d also had a pedicure; the flip-flops she wore freed her matching bright red toes to dry in the fresh, crisp, nearly frigid New York air. They don’t call it concrete canyons for nothing! The cold, biting winds sweep down between buildings and along side streets, ensuring that the hard concrete sidewalks remain equally cold and biting.

She hesitated for a step or two at the red light, but didn’t want to stand and accumulate more cold. Her impatience got the better of her and she turned to cross the wide divided boulevard before I got to Grand Central. I was sorry to see her go.

Dream connections

2008-03-06T19:48:00.003-05:00

I had one of those dreams last night. You know the sort: you find yourself in a familiar but very old environment, something is about to happen and you’re totally unprepared. It might be high school or college and you’re on your way to a test, but not only did you not study, you’re not even sure you attended any classes! Or maybe you find yourself back in elementary school, sitting under a desk in your underwear, wondering how you’ll get through the day without being noticed.

Last night I dropped my daughter off at school and someone reminded me of a PTA meeting I’d promised to attend that was about to start. I drove straight to the host house, dropped my coat in an empty room, and wandered around noticing parents I hadn’t seen since my pre-empty-nest days. I wondered why some of them looked at me oddly until I remembered I’d forgotten my wig. I was wandering through a crowd of people who didn’t know I had cancer, announcing the fact with my patchy, scraggly, white, cellophane-like hair.

When I have one of these very vivid dreams, I like to lie in bed and hold onto the feelings it evokes. I think that helps me better understand my waking emotional landscape. This dream carried a heavy sadness I don’t like to indulge when I am awake. It underscored my self-consciousness, my loneliness, and even a sense of guilt.

I have cancer. I am alone and frightened. I have wonderful people who think about me and care about me and know the full extent of my health situation through things I’ve written in this blog. But the truth is, this adventure brings a very painful sense of detachment. Some of you have said: I don’t know how you do it. Well, I don’t know how I do it either. I mean, mostly I just put my head down and plod through day by day. But sometimes I look up and try to see further than next week, and I get really scared.

Head-down-plodding gets you only so far. I’ve applied all my competence to getting through the cancer crisis and it seems to be working. But in the process, I’ve neglected other things. My life feels like a big chaotic mess to me right now, and that’s the part I don’t know how I’ll get through.

All this from a dream.

Latest scan results

2008-03-03T19:08:00.002-05:00

I met with my doctor this morning to go over the results of last Thursday’s scan. As I was sitting in the exam room, waiting for her to show up, she popped her head in and gave the “thumbs up” sign. “You’re good to go.”

“Does that mean it was a clean scan?” I asked.

“No, stable. We’ll give it another cycle and see where we go from there.”

I must have looked at her quizzically because she said “Stable is good. I just have to finish up with another patient; then I’ll come back and let you know what my thinking is about this.”

She’d said “Stable is good,” but I heard “but…”.

When she returned, she explained that frequently patients plateau for no apparent reason. The scan was good in that there was nothing negative about it, no hot spots, no new growth.

No news is good news, one might say. Only thing is, there was no change, so therefore we can’t infer anything about what is happening or why. We have to wait for the next scan for more information.

Tonight I start taking drugs for my fifth chemo cycle. In eight weeks, I’ll have another scan that should fill in the blanks of this cancer puzzle. If the remaining tumors resume their shrinking-and-disappearing act, we can proceed with the course we’re on. If the next scan is a continuation of the plateau, my doctor may want to pull me out of the study and change the treatment.

“I don’t mind taking you off study, since you’re just taking Temodar and Abraxane, which are standard chemotherapy drugs we can always go back to. If we switch treatment, it will be to an immunotherapy, not, strictly speaking, chemotherapy.” And here she rattled off some multi-syllabic medical terms to describe the drugs I’d never heard of.

We talked for a while about what that other treatment consists of. Basically, it seeks out all foreign elements in the body and stimulates immune system reactions to them. Her findings are that the drug is even more effective after taking Temodar. There could be side effects, but some people have no adverse reaction at all.

I must say, a lot of this went right over my head. I really didn’t want to hear about new forms of treatment. I’m familiar with the one I’ve been following since last June. I want it to be over, not continue down another path that would extend it possibly beyond the summer. On the other hand, I’m grateful that she is comfortable sharing her thinking with me.

“This is all theoretical,” she said. “I don’t know exactly what to make of the results, so I’m already thinking two steps ahead, but so far, everything is good.”

Travelling

2008-02-25T09:00:00.002-05:00

It’s Monday morning and I’m preparing to leave Toledo. I’m here for an annual geek gathering I’ve attended for at least the past five years. It’s a small event, about 30-40 people, who write books and articles and make presentations at conferences all over the world. These are the movers and shakers who inhabit the computer niche I’m most familiar with. Many of us are independent software developers who initially sought out technical camaraderie online and quickly became the online go-to group for peer technical support. We have since met at conferences and other events, and established important friendships in the real world.

As usual, it’s been great getting together with people I have a long history with and with whom I share an esoteric interest in software technologies. This mixed group of Visual FoxPro specialists recognizes accomplishment above most other characteristics. As a woman, I encountered some subtle gender bias in the business community at large that I never experienced in this group. Here, we recognize each other’s capabilities and contributions, and tend to ignore those characteristics that can’t be changed.

Much as I anticipated this event and the invaluable networking opportunities it provides, getting here and being away from home for four days is still not that easy for me. I don’t have a lot of energy to spare and travelling quickly eats it up. I feel like I’m not contributing my fair share, and in fact can’t think what that contribution might be; it just doesn’t come naturally, as it has in the past. In short, I feel guilty about imposing my low energy on the group. I mentioned this to one of my friends. “It’s not noticeable,” she said. “It’s inside you. People are just glad to have you here.”

But then she remembered from her own course of chemotherapy several years ago, “What’s even worse than the low energy is the low emotional energy, the feeling of detachment.”

So maybe it’s not noticeable, but it certainly is real. I was surprised to hear her say that, and relieved in a way. I don’t like feeling this way. It helps to know that it’s related to the drugs and that there’s hope I may recapture my zest and sense of belonging at some point.

Bottom line for me right now is that I’ve been away from home since last Thursday and I’m ready to be back in familiar surroundings.

Feeling much better

2008-02-15T10:40:00.000-05:00

This flu is nasty business! I followed all the guidelines and had no fever all day yesterday. By early evening I was still exhausted. I’m feeling considerably better today; no fever, no aches, and my energy and outlook are incrementally improved. All good signs and quite a relief after nearly a week of feeling crummy.

Note to self: Don’t fool around with this next year; get a flu shot.

Missed my class

2008-02-13T14:49:00.003-05:00

This flu has robbed a lot of time from my days and energy from my awake hours. Feeling better all morning, I still managed to run a fever this afternoon. I prepared for the eventuality by planning to stay home all day. What that means is that I missed my writing class.

What writing class, you ask?

I have gotten such a kick out of writing this blog, and so much good feedback about it, that I decided to sign up for a writing workshop. I wanted to get some professional direction and feedback in addition to that from dear friends who tend to have a personal investment in my writing. There is a local institute, Gotham Writers’ Workshop, that offers six- and ten-week classes at various Manhattan locations, covering all types of writing: fiction, non-fiction, memoir, mystery, travel, screenplays, etc, etc. They also offer online classes for those who can’t make it into the City, or can’t commit to a fixed time. I decided to ease into it with a six-week overview called Creative Writing 101, which started at the end of January.

So far, I’m really enjoying the class. It offers an opportunity to write about topics I wouldn’t have chosen, to read my writing out loud and have it critiqued by a teacher and a dozen other aspiring writers, and to hear and evaluate how others satisfy the same assignments. The class is opening my eyes to writing styles and helping me clarify what I like and what I want from my writing.

The class I missed today is number four, so it’s almost time to select another. I think memoir or non-fiction would be natural choices, but then I wonder if fiction might stretch me more. I find it pretty easy to write about feelings and events I’m familiar with, but one goal I hope to achieve from these classes is to free my imagination to come up with stories less directly connected to me.

Stay tuned….

Medicine explained

2008-02-13T08:00:00.001-05:00

Maybe everyone knew this but me….

I started taking antibiotics two days ago and yesterday I woke up feeling better. I thought the events were related. But it turns out that antibiotics address bacterial infections, whereas the flu is a viral infection unaffected by antibiotics. I'd heard this before, but it's information that never quite "stuck".

So why did my doctor prescribe antibiotics for me?

In my condition, bacterial infection is particularly dangerous. This flu could easily result in an upper respiratory infection that could lead to all manner of other complications. The antibiotics kill off any bacteria that might make that happen; the drugs are a preventive protection.

And what can I do to get rid of the flu?

The flu, it seems, is a self-limiting event. It runs its course and then it’s gone. The best to hope for is successful symptom management with Tylenol or Advil for aches and fever, clichéd-but-effective chicken soup, plenty of fluids, and lots of rest.

This all seems to be working just as it’s supposed to. I woke this morning from nearly twelve hours of sleep with no fever, and no awareness of any during the night. I should be good for a round of golf by tomorrow!

Feeling better

2008-02-12T08:24:00.000-05:00

I woke up with no fever this morning. What a relief! I've got the energy to go into the City to have blood drawn, which I was supposed to do yesterday when I couldn't get out of bed. Just wanted to note the progress here, and comment on the miracle of modern medicine.

Ah, those antibiotics...

Flu

2008-02-11T22:16:00.000-05:00

I can’t remember the last time I was this sick.

I had strep throat in high school and missed Mike Miller’s holiday party. Then, thirty years ago, I had the flu and couldn’t get out of bed to make my daughter’s lunch for school. And about five years ago I had a bad case of bronchitis. There may have been a cold, or a non-memorable something-or-other in between, but basically, my health is something I could count on.

Now is different, of course. I've been taking a mix of very toxic drugs ever since last June. My immune system is compromised and can't fend off the germs that would have had little impact in the past. Since Saturday afternoon I’ve had fever as high as 103.5, a deep, painful cough, and I ache all over. My doctor started me on antibiotics, so I’m hoping the fever is gone by tomorrow.

In the meantime, I sleep a lot.

Progress

2008-02-05T09:00:00.000-05:00

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.

Still the side effects

2008-02-04T18:07:00.000-05:00

Last week, about two weeks after an Abraxane infusion, I lost my hair for the third time. This business of growing and losing hair is one of the conditions I have to accept until the whole of the treatment is complete. I had another Abraxane infusion this morning, but I don’t have much hair left to lose. It grows back a bit between cycles, when I have an extra two Abraxane-free weeks. Just when it starts looking cute again, it’s time to lose it. I’m not fond of this process.

During the 42-day drug-taking phase that includes two Abraxane infusions and a nightly Temodar pill, I have a number of other side effects to manage. Temodar and Zofran, the anti-nausea pill I take with it, can cause headaches, constipation, heartburn, itchiness, hives, and who knows what-all else! In my case, headaches can take the form of migraine auras. My doctor agrees that they’re probably the same old stress-induced phenomena I’ve experienced for nearly thirty years, but next time it happens she may send me for an MRI.

Before my nurse starts administering Abraxane, I get intravenous doses of Benadryl, Pepcid, some steroid whose name I never remember (Dexamethasone), and another anti-nausea drug (Kytril). I get powerful doses of all of these to counteract the effects of the killer Abraxane. I leave the treatment room feeling groggy from the Benadryl. By tomorrow I’ll be speedy and energized from the steroid and that will last for two or three days. I'll also lose my sense of taste for three or four days between now and the weekend.

“Do you experience neuropathies?” my treatment nurse asked.

“What’s that?”

“When irritated nerves numb your fingers and toes and make them tingle.”

“Come to think of it, I do. My toes tend to feel that way when I wear anything more restrictive than Birkenstocks. I didn’t know that was a symptom too.”

I’m looking forward to the time when a headache is just a headache, and I can try out my spiky white (hopefully curly) hairdo on the world.

Unrestricted membership

2008-01-31T17:06:00.000-05:00

The “club” has a very varied membership. Cancer patients don’t have to have any common characteristics, but we share a bond of common experience. It’s not based on the severity or longevity of the disease so much as the fact that we’re all dealing with life-threatening circumstances. All of us know that whatever we’re doing at any given moment, if the cancer makes a demand, we need to answer; cancer suddenly becomes our highest priority, the thing we’ll drop everything else to attend to.

In most cases, this knowledge confers the warmth of shared understanding. We become more compassionate with each other because we know we’re also understood.

Not long ago, I arrived at The Cancer Center for an appointment and headed for the ninth floor. Another woman, wearing a baseball cap with little underneath it, made it to the bank of elevators just before me. I saw her push the button just as a door closed and the car left the gate. We looked at each other.

“Just missed,” I mused.

“By a hair,” she smiled wryly.

“So to speak.”

It was a private, cancer moment, and from the look on her face, I knew we’d shared something much bigger than an elevator.

Chutzpah

2008-01-30T16:18:00.000-05:00

Unlike most of my visits, the waiting room was packed full, just like the doctor’s schedule. Many of us had been sitting there for a long time, waiting, wondering what emergency might have caused this logjam.

An elderly woman walked in and briskly approached the receptionist’s desk. She had no trouble walking or communicating. “I’m EJ,” she said, loud enough for all of us to hear. “Is the doctor running on time?”

“No,” the receptionist said apologetically. “She’s almost two hours late.”

Some of us in the room exchanged glances. We didn’t need to be told things were backed up, but the actual number startled us.

“Well, tell her I’m here. I’m eighty-nine years old, I’m a cancer patient, and she told me she’d see me immediately when I got here.”

Again, the shared glances; we couldn’t believe our ears. This entitled woman was playing the “C-card” in a waiting room full of cancer patients!

Proud mama

2008-01-25T11:27:00.000-05:00

I got an excited call from my younger daughter last night. She’s been accepted into the one doctoral program she applied to, with offers of assistanceship and fellowship money both in the works. Come fall, she’ll be working with an environmental chemist at Penn State, pursuing her lifelong dream to “be a scientist” when she grows up.

Being a scientist was kind of an abstract dream initially, but she’s followed it all the way through graduate school so far, combining an undergraduate degree in chemistry from McGill with a masters in environmental management degree (MEM) from Duke. Now, an opportunity to study soil chemistry and the way plants absorb metals is a perfect way to pull all the pieces together – her passion for science, and her penchant to understand and benefit the ecological system we live in.

“I wasn’t sure I’d get in,” she said to me.

I laughed. I’d heard the same story since elementary school, when she claimed to not be good in math. Every test was one she suspected she’d failed. But she is a hard working and eager student. She headed off any suspicion of academic failure by setting her sites on her targets and keeping very focused on her work.

I’m so proud of this accomplished young woman. She’s taught me plenty about goal setting and achievement. I’m looking forward to this stage in her life and academic career.

And I very much look forward to having her back in the same time zone!

Amazing

2008-01-24T00:22:00.000-05:00

A friend pointed me to a website that I think is amazing, many levels of amazing. It’s actually a blog site, here on www.blogger.com, which means it’s completely free of charges for the person who owns it; no hosting fees, no setup or maintenance fees, no traffic fees, nothing. And that’s just for starters.

The woman who created the site appears to be a hip, young, free-spirited, and very talented writer and photographer. She spent several years in San Francisco before deciding to return to New York City, then headed off on her Vespa motor scooter for a slow, scenic trip home. Along the way, she fell in love with many places, so it wasn’t long after she got to NY before she turned around and headed for the wide open spaces of Wyoming, where she’s been living in a one-room cabin, in a town of 300, for the past couple of years.

Now here’s the serendipitous part that pulls all the other amazing parts together: the project. Last spring an orphaned, newborn coyote wandered into her life. Both its parents had been shot, and it would not survive without some form of nurturing; so, since harboring a wild coyote is not illegal in Wyoming, she took the animal in. Being a photographer, she shot fantastic pictures of the baby daily. And being a writer, she supplemented the pictures with tantalizing stories of his development. The coyote has grown almost to adulthood and has stuck around to become part of a multi-species family: one female adult human, one tomcat, and Charlie the coyote.

www.DailyCoyote.blogspot.com is the popular site that’s the outgrowth of her adventure.

Before you take off to look for yourselves, I want to give a computer tip: If you hold the Shift key while you click on the link, the website opens up in a new window. Even better, if you’re using Internet Explorer 7 or FireFox as your browser, you can hold the Ctrl key while you click the link to bring up the website in a new tab of the current browser window. And if you’re using Windows Vista, you can click the link with the middle mouse button, if you have one, to open in a new tab. All of these options leave the window where you’re looking at my blog intact, so you don’t have to lose it or navigate back to it. And yes, there are Mac equivalents of the hotkey combinations, but darned if I know them….

I’ve had discussions with some of you about using the Internet to generate income. There are lots of people doing it, and lots of scams and schemes around that promise to shoe-horn you into an Internet business of your own… for a fee. They don’t all work, at least not for anyone but the person selling the formula. And many of them are really tacky implementations, not something you’d want your name attached to.

The DailyCoyote site, on the other hand, is an exemplary model of a tastefully executed website that offers visitors high quality content for as much or as little as they want to pay. The selling is subtly integrated into the site – photographic prints, coyote calendars, paid subscriptions for email delivery – all there if you want it, but not forced down your throat. And the site remains amazingly beautiful whether you buy or not.

I’m so impressed at the quality of DailyCoyote. The implementation is awesome and she deserves every ounce of success that’s bound to come her way. It leaves me wondering how to make a similar statement in a realm I’m familiar with. Quite a challenge!

Lose the small talk

2008-01-19T18:00:00.000-05:00

A friend who owns a folk art gallery nearby gifted me with a wonderful hand-carved sign that cracked me up in her store recently. Since I found it hilarious (for multiple reasons), I thought I’d show it here, rather than try to describe it.

This sign would have spoken to me at any point in my life, I’m sure. But in the throes of a battle with cancer, the last thing I’ve been able to deal with for the past half year or more is “perky”.

Mind you, I’m not looking for somber and serious and deep all the time either. It’s just that in this condition, diversions aimed to take my mind off cancer haven’t soothed; they often simply annoyed me instead. And that just left me with guilt at being rude to friends wanting to help. The end result for me has been that I tend to withdraw into myself rather than actively push people away. All of which brings out needless worry in my friends... and the cycle goes on.

Laurie Todd, whose book I reviewed last summer, describes herself as “a nice, polite, caretaking gal” her whole life… until she underwent a mammoth fight for her life against appendix cancer and her health insurance company. She recorded this outgoing voicemail at the time: “If you are a doctor with the HMO, I would like very much for you to leave a message. If you are anybody else, I DON’T GIVE A RAT’S ASS!”

Other people I know have refused to take visits from people they were seemingly close to before their illness. And when they did allow others into the room, they sometimes shut them out with silence.

It’s hard to know what to do or say in the face of cancer. It dishes up more than its share of awkward moments. But it’s a good bet that perky can easily backfire.

Innocence found

2008-01-18T20:56:00.000-05:00

When my older daughter was a little girl, the sight of homeless people on New York City streets reduced her to tears. She couldn’t understand why her parents wouldn’t drop money into all their outstretched hands, why we weren’t moved to rescue each and every one of them!

Street musicians, on the other hand, represented a form of begging she simply couldn’t tolerate, a target for her innocent outrage. “They can work. They should get jobs!” she would exclaim, not realizing that this form of street hustling was actually a kind-of job for them.

I love live music, but even the street variety has to measure up to a certain standard before I’ll take notice. Still, begging or no, I rarely ever found myself moved to drop money into a busker’s open case.

Well, this morning I did something I never did before. I bought a music CD from musicians in the subway! This group, The Ebony Hillbillies, performed regularly during the holiday season near the Times Square Shuttle entrance in Grand Central. Music has dropped off a bit since the height of the holiday-tourist season, and my commuting schedule is very erratic, so I wondered if and when I’d ever see them again. To my delight, they were there in their spot this morning.

This group is terrific! They’re a quartet of older black dudes who look like they’ve dropped into a foreign realm from a very faraway time and place. They’re not club performers and you won’t find them on Amazon.com, although amazingly, they do have a blog site! They sit there and play their hearts out into fiddle and banjo, washboard and bass. Their primitive vocals restore a level of innocence I thought was lost. This time around, I’m buying.

Boring

2008-01-16T21:00:00.000-05:00

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.

Survivor guilt

2008-01-10T21:30:00.001-05:00

This is going to sound crazy... sometimes I feel like a fraud, a cancer fraud!

Whenever I meet someone I haven’t seen in a long time, they comment on how good I look. I interpret that to mean I don’t look sick. As evidence, my skin tone is good, my weight is about what it was before my diagnosis, and I exhibit good energy. By all accounts, I look “normal.”

The truth, of course, is that I have a minimal and shrinking amount of cancer, and the drugs I’m taking don’t interfere too radically with my lifestyle. On top of that, since I’m self-employed, my lifestyle tolerates a good amount of flexibility.

That’s not to say this has been easy for me. The cancer ordeal is a rough one, a tremendous trial of body and spirit, a true nightmare of details, reordered priorities, and anxiety. Cancer robbed me of concentration and focus at a time when I couldn't afford an extended crisis in my life (Is there ever a good time?!), and even now, I'm clawing my way out of the trouble I managed to get myself into by having my attention diverted.

No, it hasn’t been easy, but I am alive. And I have prospects of living a long and healthy life from here on out. To be sure, I’m very happy about that. In addition, my life is enriched by the struggle, in some weird way. But I’m also dogged by guilt. Not everyone survives cancer. And cancer or not, many people are in much worse shape than I am.

For example, I’ve been following the progress of a man in his mid-forties who I used to know. He was young and smart and funny and competent when I knew him fifteen years ago. Now he’s recovering from a major stroke, brain cancer, seizures, meningitis, and the effects of countless drugs and treatments. According to his wife’s blog, his days revolve around many hours of physical therapy, speech training, acupuncture treatments, naps, and endless doctors’ appointments. He’s shown tremendous courage, and now, a year and a half into his ordeal, he measures accomplishment in the number of unaided steps he can take from his bed to his fish tank – about a dozen.

Another friend is suffering through his mother’s bout with lung cancer. She was recently diagnosed with advanced symptoms. Her treatment is so unpleasant it leaves her wondering how much of the “cure” she can endure. My friend and his family are reliving the pain they went through twenty-five years ago with his father in a similar situation.

Yes, everyone has their own particular form of torture to overcome; life keeps throwing tests our way. I've always thought of myself as a survivor and hope that's played a part in my struggle with cancer. Cancer is cancer is cancer. Still, it's wrenching and humbling to look around and see what other people are forced to deal with….

My team

2008-01-08T18:32:00.000-05:00

I am so moved by all the kindness that has come in response to my last blog post! Sometimes I feel very alone in this campaign against cancer, but today is not one of those times! Comments on the blog site, private emails, phone calls: I can’t tell you all how touched I am by your concern and good wishes and your willingness to keep up with news of my progress.

The past half year has been a trial for me, for sure. But one thing that has emerged is a strong awareness of how blessed I am.

Thank you dear friends.

Fewer and smaller

2008-01-07T17:00:00.000-05:00

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!

2008-01-01T21:00:00.000-05:00

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!

On the Santa Train

2007-12-13T20:48:00.000-05:00

Last weekend I took a ride a short way up the Hudson River with my sister, her daughter, and my niece’s three young daughters. The MTA event involved a festively decorated commuter train, goody bags for the kids, and a Santa Claus and elves who made their way through the train cars to talk with all the children. The trip started in Grand Central Terminal and ended up back there in less than an hour. The anticipation beforehand was very exciting for my grand-nieces, and the actual trip was a lot of fun.

Now, I realize that Santa is not everyone’s cup of tea because the myth doesn't square with all belief systems. But I long ago stopped seeing Christmas as a religious holiday. More than anything else, it's an extended commercial ploy to enforce giving, and buying. I find the commercialism and crowds of the season nearly intolerable; all the hoopla makes me quite cranky.

Apart from my humbug air, however, it's still absolutely magical to be able to accept that one man can make his way around the world delivering gifts to all children in a single night. It’s only for the young, and what a delight it is to see through the eyes of those young believers. In fact, after six months of dealing with cancer, I long for my own Santa Claus!

My cat

2007-12-09T14:00:00.000-05:00

I glanced over from the exercise machine this morning and saw my cat slinking through shadows in another part of the basement. When I finished working out, I sat on the couch to watch the end of the DVD I use as a treat to get myself on the exercise machine in the first place. I noticed the furry, speckled ball curled up on the next cushion and reached out to pet her.

Problem is, my Kitty's been dead since last April. The ball of fur sitting next to me was a hat I’d been wearing to warm my bald head before I started exercising.

Now, this was not a grim-reaper-and-a-bright-white-light moment. I’ve been sensing my cat’s presence for the past eight months. It doesn’t surprise me that my house has absorbed her rhythms and plays them back to me on occasion. She was a deaf, forgetful, old lady the last few years of her life, but she filled my home and my heart.

I could always count on a loud scolding from her when I walked into the house after being away. And there were frequent signs that she romped and cavorted, even when I wasn’t home. She loved to curl up in my lap… along with my laptop, or perch on top of the printer while I worked, or doze in one of the many baskets she loved as much as I do. She sat in a window and watched every step I took to the mailbox and back. She never ate table food… except for ice cream which she licked daintily from a spoon. And she always slept in my bed.

She was my friend, my soul mate, for nearly nineteen years. I was with her when she died and it was one of the saddest moments of my life.

Good heavens, I miss that cat!

If you see something, say something

2007-12-07T19:00:00.000-05:00

Several years ago, when my daughter was in junior high school, I confronted a couple of boys fighting on the street in our small, upscale, suburban town. A circle of kids surrounded the two as one pushed the other, goading him to action. Both were big for their age, nearly six feet tall, bulky and flabby and not yet comfortable with the size they’d expanded to. They were still, truly, boys.

I walked up to the one doing the pushing, stamped my foot, and shouted as sternly as I could, “Stop it!” They were startled, gave a “who me?” look, and pretended there was nothing really going on. My daughter, in the group of onlookers, was mortified.

That incident didn’t scare me. I never felt at risk. I was simply a mother, doing my motherly thing. And that was, after all, Chappaqua.

This evening, as I followed the heavy crowd of rush-hour commuters to a waiting subway shuttle, a young man in front of me and walking faster than the rest of us, dropped something. It sounded like a phone, so I bent down to pick it up for him. It wasn’t a phone. It was a knife. And just as I recognized it as such, he turned back, swooped down, and picked it up himself.

I was in Times Square, where there are, thankfully, many people, including many police officers. I walked up to the nearest pair of transit cops and told them what I’d seen. One of them went off to confront the young man, who by this time was on the next platform.

Then I got scared.

This man had a similar, young-for-his-size air; big, burly, his pants in danger of losing the struggle with gravity. And he stared right at me from across the tracks as I pointed him out to the officers. There is only one shuttle at a time between Times Square and Grand Central, and as I boarded, I started having visions of him waiting for me at the other end of the line... with his knife.

This incident worked out okay for me, a false alarm. I’m on a train, on my way home to my safe suburban haven. For the most part, I’m not fearful in New York, although that hasn’t always been so. But this incident hit me in a vulnerable spot. It reminded me that no matter how protected I feel in my own skin and environment, I can’t account for the unwholesome impulses of others.

Not to sound paranoid, but no matter how smoothly things seem to be going, there really can be dangers lurking in the shadows.

Hair today, gone tomorrow

2007-12-03T21:59:00.000-05:00

Nearly two weeks ago, a couple of days after my last Abraxane infusion, my skin was very tender to the touch, particularly on top of my head. It was a symptom I remembered from the earlier treatment cycles, and I took it as a sign that my scalp was preparing to give up its recent crop of newly grown hair. But it didn’t happen.

I met with my doctor this morning and mentioned that I still have hair. Her reaction amounted to “Go figure.” She told me that another of her patients just went through his entire first cycle without losing his hair. Another medical mystery, and from my point of view, not an unwelcome one. It was easy getting used to having hair again.

Tonight I sat down to my computer and noticed short white hairs all over the keyboard. I tugged at locks and they came out in my hand. Oh well. Once again, I’ll be bald by the end of the week.

The pictures speak for themselves

2007-11-24T18:15:00.000-05:00

It was a wonderful Thanksgiving; a small family gathering in upstate New York, filled with warmth and hugs and lots of good food. My taste was off, but it was still delicious! And it was a rare opportunity to enjoy both daughters at the same place and time.

I am thankful for the opportunity to go natural....

What does this mean?

2007-11-20T14:29:00.000-05:00

Recently, when I asked my doctor about my allergic reaction to Genasense, I remarked that the drug company might want to do some additional tests to try to identify some characteristic in me that provoked this reaction. Surely, now that it’s happened once, this type of reaction will occur again. Is there more they can know about how to predict its likelihood? Is it as simple as the fact that there are no longer any active tumors in my body, no more Bcl-2 protein to attack?

She thought for a second, then related an experience with one of her earliest study subjects that refutes my last question. The patient has remained cancer-free the entire eight years since the study. The drug committee’s protocol at the time called for eight cycles; the patient’s cancer was gone after four. It was a new study then. My doctor and her patient were both nervous about stopping treatment, so they continued on for sixteen cycles with no adverse reaction to the drug.

So there you have it: one patient with a life-threatening allergic reaction, one non-cancerous patient tolerating the same drug for over two years. Is there any information in that? Is that even a meaningful sample? My experience may be so rare as to be of questionable value, just a red herring.

This may be the end of it. “Everyone’s allergic to something,” my doctor says. I only hope that my altered program continues to produce good results. But I’m trying real hard to keep anxiety out of the equation.

Overheard

2007-11-19T21:21:00.000-05:00

I couldn’t help but hear the conversation on the next couch in the waiting room. The man had just gone off, rather cheerily, to the phlebotomist’s office to have blood drawn. His wife stayed behind to talk with a couple of friends they ran into there. Her tone was a bit desperate, pleading, disbelieving. It was all about the patient.

“He looks like he’s lost weight, but otherwise, he looks pretty good,” one of the friends commented.

“He looks thinner, but his weight is the same. He doesn’t sleep. He says he doesn’t sleep all night.”

“When that happens to me, I eventually doze off,” said Friend. “Is he in pain?”

“Yes, and they can’t tell us the source. The doctor says things are the same, but they can’t say where it is, why he’s in pain.”

“He says he’s full of anxiety,” Wife continued, “and the thoughts wake him at night and he can’t get back to sleep. Then he spends the whole day in bed. He doesn’t get dressed. He’s showered once in three weeks. He doesn’t come downstairs except to eat. He only goes out to come to these appointments. When we’re out, he comments how good the fresh air feels. I encourage him to go out and take walks other times, but he just stays in bed.”

“It sounds like he’s depressed,” said Friend.

“Yes.” Wife was certainly willing to accept the diagnosis, but she wasn’t finished rattling off her catalog of complaints. She didn’t know what to make of him, so she repeated his transgressions, louder and louder, maybe in hopes of scaring off the offending signs of anxiety and depression.

I can certainly relate to that patient’s feelings. I’ve been there. In fact, I never know when the anxiety is going to overtake and kick the wind out of me. I can relate to his wife’s reaction too. I’ve endured no end of criticism from the Wife who sits inside my head suggesting I exercise, seek out more client work, organize and finish my own paperwork, just do something. But it’s not that easy. There’s always the monster waiting around the corner, and he’s not at all shy about taking over my mood.

I wonder sometimes if it’s easier going through a life-threatening event like cancer alone, or with someone else close by. I can certainly see the downside of being by myself, and I’m very grateful for the many people who have reached out to me with kindness and made themselves available.

On the other hand, I’ve seen too many partners lash out at each other. Both sick and non-sick feel helpless. One or the other nags, and one or the other runs away. It’s a very sad and complex problem with a lot of wrong answers. The more people there are involved in the core of the situation, the more expectations get in the way, and the more opportunities exist for things to go bad.

The right answer is that there is no right answer. It's just a matter of facing this thing day by day, and trying not to hurt too many people in the process.

The cruelest cut of all…

2007-11-14T11:25:00.000-05:00

“I can’t believe Thanksgiving is next week already,” my daughter commented last night after we’d talked a while about our plans for that day.

Thanksgiving is my favorite holiday. There are no religious or political themes to wade through, no overblown commercial campaigns to legislate generosity. It’s simply a glorious excuse to share hugs, warmth, and good food with loved ones.

“Next week? For real? Oh no,” I groaned.

“What’s the matter?” she asked, noting my change in tone.

I’d already done the math. “This coming Monday I’m due for my first Abraxane infusion. For about five days after that, food won’t taste like much of anything. Thanksgiving falls right in the middle of that.”

It’s about the people, I keep reminding myself.

“And you’ll take home plenty of leftovers,” my sister generously offered when I made the comment to her afterward. Now, there’s a gesture to be thankful for!

Fix me

2007-11-13T18:21:00.000-05:00

I heard her complaints from the other side of the curtain in our shared hospital room: “I wish someone could pick me up and put me into a spot where I’m comfortable.” Her rants went on and on. “I won’t eat until my stomach clears out. I feel so impacted. I’m in pain.”

At times she sounded condescending. “You don’t understand,” she’d say to her nurses and aides as she refused medications, foods, drink, and treatments they offered that might ease her condition. Other times she was simply angry, augmenting her stubborn refusals by chastising everyone who tried for failing to help her. Too weak and sore to move herself into a comfortable position, she begged over and over, “Please help me sit up, just once more.” But then she’d scream, “You’re hurting me. You’re not doing it right.”

There’s not much in this world worse than constipation; unless it’s someone else’s constipation. There in the next bed, separated from me by a thin curtain, she bargained continually, whining, complaining, promising to be good if someone would only help her. “I can’t,” she whined over and over, and almost at the same time, “Help me.” Is she really saying, “Do it for me”?

“I can’t; I can’t. You try to feed me and I can’t eat. I Don’t. Want. Anything.”

Her private nurse attendant tells her she has to eat if she wants to eliminate. And she needs to eliminate if she wants to go home.

“I don’t want to go home,” she yells. “I want someone to hold my hand,” I hear her say under her breath. “Why won’t they just leave me alone?! Can someone please tell me why they won’t leave me alone?”

I’d been listening to this all day and watching the nurses scurry reluctantly in and out in response to her buzzer-ringing and hollering. They’d do their job perfunctorily and leave as soon as possible; which only made her more angry and ornery and abusive. I could no longer remain silent. I untwisted my IV line, pulled the pole along behind me and stepped behind the curtain.

“I’ll tell you why they won’t leave you alone. You’re in a hospital. It’s their job to try to get you better. And if they can’t make you better, they try to make you more comfortable. But you have been very resistant to their help, which only makes them want to get away from you. If you’re going to get more comfortable, you have to participate to make it happen.”

This is the first time I’d gotten a look at this woman all day. She is gaunt, emaciated, worn out, used up. Her belly is hugely distended. She embodies my memories of cancer from childhood, when “cancer” was one disease and it invariably ended in death. Initially her eyes were downcast and lifeless, with a heavy touch of guilt. She knows she's made my hospital stay less than pleasant; she's made frequent remarks how embarrassed she is about what the person in the next bed must think of her. Now I'm standing in front of her and maybe I'm going to dish her anger back at her.

“Your best bet is to go along with the program here, then get yourself home where you’ll be in a better position to be left alone. Have you looked into hospice?”

“No,” she said, “what’s that?”

I told her the little I know, which is that a person can have care in-home or in-facility, care aimed at making patients comfortable at end-of-life. She could probably get more information from the nurses.

She opened her eyes and looked at me directly. I’d dared to talk about her death.

“This is not fair,” she opened up. “Look at me. My stomach hurts. I can’t sit up. I can’t lie down. I can’t eat. I can’t get comfortable. I’m scared.”

“I understand ‘scared’,” I commiserated, “I have cancer too. But you’re going to have to stop saying ‘can’t’. No one wants to do anything for you if you don’t make an effort to find things that work. You have to let them know what you want and you have to let them try to provide it.”

“You’re right, it’s not fair,” I continued, “But it’s what is. There are a lot of things that aren’t fair.” And I related the story of the man who was struck by a car and killed in my hometown while walking on the sidewalk this past summer.

“I’m not afraid of death,” she said. “What scares me is what I leave behind. It’s having people see me this way, my daughters, their babies. I don’t want them to see me and remember me this way. It’s humiliating.”

“I understand. But you have to remember that what’s particularly unfair about death is that it robs the people left behind of someone they love. If you refuse to see them now, you’re taking away an opportunity for them to see you and love you and connect with you while you’re still alive. It’s awful to lose your mother. Let them have you while you’re still here… for them.”

I hadn’t wanted to touch this woman. Her appearance was scary, her demeanor hostile, hurtful, demanding, unforgiving. But she was looking at me directly through most of this interchange. I’d connected with her and I could see she appreciated it. She motioned for me to sit on her bed and reached out for my hand. We sat there, holding hands and understanding what it means to be in the cancer club.

My contribution to the research

2007-11-12T21:00:00.000-05:00

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.

Feathers

2007-11-08T13:10:00.000-05:00

“Wanna see something funny?” I asked my daughter recently while lifting off my wig.

“You’re covered with fuzz!” she exclaimed. “How cute.”

It’s been several weeks since my last Abraxane infusion, the drug that caused me to lose my hair. My head is now covered with hair, feathery and white. It’s not long enough to really keep me from looking bald, and there’s a good chance I’ll lose it again. But in the meantime, it’s pointing the way to what I have to look forward to.

Sometime in the not too distant future I have a decision to make. I would so love to be free of the expensive and time-consuming color habit I never wanted to start in the first place, but once started, I’ve faithfully maintained for the past fifteen or so years. I’m genetically disposed to white hair, but it’s something I was never prepared to welcome on my head. It reminds me too much of my grandmother, who had the snowiest of snow white hair from the earliest I remember her. Now when I see pictures of my young grandmother in her mid-forties, I’m amazed at her young face. That white hair was such a striking statement of “old” that I never got past.

The wig I wear is very close in color to what my hair salon came up with for years. It’s a good match for what my color used to be. But as we age, our skin tone mellows. Mother Nature is the perfect colorist and what she has come up with for me now is white hair to go with my toned down skin. When I see myself bare-headed in the mirror I’m struck with how the halo of white actually brightens up my face.

But then there’s the “old” thing. White hair will always seem old. Am I ready for it? Such a dilemma!

I’d like to post a picture here, but I’ll give it a couple more weeks to grow in before I have another Abraxane reaction and it starts falling out again. Maybe my friends can help me decide. Although, truth be known, who's actually going to tell me I look old?!

Freak-out

2007-11-07T22:00:00.000-05:00

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.

Plan B and a half

2007-11-06T14:35:00.000-05:00

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.

Plan B

2007-11-05T21:00:00.001-05:00

After a week of keeping my mind disengaged during awake-time with PacMan and Sudoku online, my current mind-numbing techniques of choice, and nights of poor sleep, I sat down to talk with my doctor this morning and started to cry.

“I don’t usually cry about this, but I’m so scared,” I confessed somewhat apologetically. “What was saving my life is now threatening to kill me.”

“It’s okay. I have a plan.”

I knew she would, of course, but the wait had seemed interminable.

She spoke with the Genta research representatives late last week. They were, in fact, in New York to attend two of her presentations to cancer professionals on this research study. When she told them about my experience they weren’t overly surprised; they knew what to do. My doctor has administered over half the Genasense drug taken by melanoma patients in this country and had never encountered this reaction with “solid tumor”, but they had seen it in a handful of Chronic Lymphocytic Leukemia (CLL) patients in other trials. Their method of dealing with the situation is to “pre-treat” the patient with a high dose of a strong steroid that counteracts and prevents the allergic reaction. When they pre-treat, the patients go on to receive a full week of IV infusion without life-threatening side effects.

I looked at her skeptically. “What if I go home and pass out on my kitchen floor when the steroid wears off?”

“That’s why I want to keep you under observation for a couple of days,” she said. “We’ll start the treatment and then you can go to the hospital for an overnight stay, maybe two nights. If something happens, it will be in the first twenty-four hours. I want you here in the cancer center most of the day, where we know your treatment history, and I want you there after that, so they can monitor your blood pressure and condition.”

Which ruled out staying at my daughter’s apartment.

“This begs the question in my untrained mind. Do I possibly have leukemia?”

“No chance of it,” she said. “The major symptom of that is a very high white blood cell count. We monitor your blood all the time and your counts are normal.”

“It’s a little scary, but I’ll do it if you believe it’s worth a try.”

“The worst case scenario is that it happens again, we have to scrap the Genasense, and we continue with Abraxane and Temodar alone. In your case, there were no live tumors on your last scans, so I’d be pretty comfortable with that option. And if you have to abandon the Genasense, they’ll still keep you in the study,” which means they’d continue to follow my progress, and pay for drugs not covered by insurance.

So she sent me home to pack a bag, and we scheduled Day 1 for tomorrow.

Rough week

2007-11-01T20:35:00.000-04:00

I don’t mean to bludgeon any of my dear friends with this, but it’s been a bad week for me. I can’t seem to keep my mind on anything; not the work, not the fun stuff. This hammers home the point for me all over again that the worst state of all is uncertainty. Not knowing, not having a plan… it robs concentration. It’s deadly demoralizing.

I had a gynecological exam this afternoon… yes, another doctor chasing down the basis of yet another set of symptoms, or maybe more side effects. My mind wandered as I reclined on the examination table, and all of a sudden I found myself wanting to cry and wishing for my Mommy.

It’s funny how you never outgrow that urge to be cradled.

Dyslexia

2007-11-01T20:27:00.000-04:00

On occasion I like to remind myself that I’m a computer expert. Computer dinosaur may be more like it, since I’ve been involved with all manner of hardware and software since the mid-sixties. I know my way around a technical problem; that’s a big part of my life, and one that gives me a lot of pleasure. But there are a few unexpected things that always give me trouble.

Maps, for example. I need to turn a map upside down to read it if I’m heading south. And telephones. I can’t ever seem to get the hang of call-waiting and more often than not, I disconnect one party or the other… or both. And worst of all, the metric system.

Now you’d think the metric system would be easy for my logic-based mind to grasp. After all, it’s very easy to multiply and divide by ten. But in addition to logic, my brain runs on images. Inches and feet and quarts are part of my visual vocabulary; centimeters and liters are foreign.

I mention my trouble with the metric system because I noticed an error in a recent blog entry. I said that my tumors had shrunk from 1.6 to .9 cm, when in fact that should have been millimeters, not centimeters! That’s a big difference. The tumors started out quite small and they are being reduced to dust at this point. But .9 cm is nearly half an inch!

I mentioned this error to an aunt the other night in conversation and she was very relieved. Unlike me, she is not metric-challenged and had been concerned about the size I first reported. I changed the blog entry, but I know there are others, like my aunt, who had already read it and haven’t seen the correction.

How can this be?

2007-10-30T19:46:00.000-04:00

When I was mid-attack yesterday, throwing up, flushed with heat, throat tightening, and nearly passing out, I asked my doctor, “How come this is happening? Why now?”

She said that allergies can develop over time because the body builds up antibodies that eventually reach a critical mass. Also, there may be reactions along the way that don’t register as such. For example, early in my first treatment cycle I had an episode where I nearly passed out in Grand Central. They’re rethinking now that it might have been an unregistered reaction.

I didn’t end up in the hospital ER yesterday. Forewarned is forearmed. Everyone was prepared to notice symptoms. The results of the previous week’s CT scan ruled out an embolism; if it happened again, it would be a pattern implicating allergy. My doctor wrote orders in advance for steroid and Benadryl; the IV bags would be there if needed.

I am so out of sorts today. It’s been very difficult to keep my mind clear and focused. I’ve been trying to attack my mountain of paperwork, but I keep getting distracted.

I called the oil company this morning to report that my heat didn’t go on. I went downstairs and pushed the furnace’s red button to reignite the pilot light, but nothing happened. They scheduled an appointment for later in the day, commenting that it might take a while since there were a lot of service calls for heat problems.

When the heat guy finally showed up, he walked to the thermostat first, turned up the temperature, and without missing a beat, the heat went on! All day I thought the furnace wasn't going on because the pilot light wouldn't start, but it was because the thermostat was set too low. Oy vey!

Mystery unraveling

2007-10-29T21:30:00.000-04:00

It happened again….

I went into the City to start the third treatment cycle after my aborted attempt last week. Everyone seemed a little nervous.

I talked first with the nurse program coordinator and with my oncologist, as I always do on infusion days. They were particularly interested in how I’ve felt this past week. My doctor was now leaning toward the theory that my freakish episode last Monday was the result of a bolus of Genasense getting pushed too fast into my system. She wanted to exercise caution and have me stay in the center for observation for about an hour after starting my IV pump. That was okay with me since I had my computer with me, as I always do in such situations.

I went to the treatment floor to start my infusion. Everything went smoothly. I ate my lunch (not pastrami) while waiting for the drugs to come up from the pharmacy. The infusion nurse drew blood from my arm rather than through the mediport. She started the IV and I sat in my cubicle for an hour or so while it pumped quietly. Several people poked their heads in to see how I was doing. Everything appeared fine.

I heard the nurse on the phone at her station telling someone that I looked good. She came in to tell me I could go home. I leaned forward to pack up my computer and…. “I don’t think so,” I said. All of a sudden I felt the heat rush, the nausea, the dizziness, the closed throat. “I think you should take my blood pressure.” And sure enough, it had suddenly fallen to 84/53.

Oh no, here we go again. In minutes I was throwing up and feeling faint.

“Once is a fluke. Twice is an allergy,” My doctor said as they pumped me with steroid, Benadryl, oxygen, and she made the decision to abort treatment again for another week.

I am so bummed!

“What are we going to do?! Can’t we just keep the pump going and I’ll live with the symptoms?” I asked.

She looked at me as if explaining to a child. “I’m not going to kill you with this treatment. We’ll come up with something.”

And she will. She has more experience with this drug than anyone else, and she hasn’t seen this kind of reaction before. But maybe the drug company has some information to share. She will come up with an altered plan by next week. Maybe we’ll continue Abraxane and Temodar, the killing drugs, without the Genasense. Maybe Genasense has done its work and the other two can continue to finish the job without it.

This is not going to be an easy week. I’ll try not to speculate and worry too much. The medical details are, after all, way beyond my expertise. But it sure was comforting to have a plan and simply be able to follow it. This business of being unsure about where I’m going is scary. The best part is that I know I’m in good hands and I trust my doctor to come up with something. Until I know more, I’m going to fight the urge to let it get me down.

Feeling fine

2007-10-24T23:30:00.000-04:00

My last blog entry painted a pretty awful picture. Yes, it was unpleasant and yes, it was scary. But that was Monday and this is today. I want to share that tonight I’m feeling really good.

A friend called tonight at 10:30, thinking it was 9:30. After a half hour, he was yawning and falling asleep on the phone. I, on the other hand, felt jazzed and energized; this after spending the day at a client site in the City; and this in contrast to feeling exhausted most nights before 10 o’clock for the past four months.

Feeling this good after being off chemo drugs for three and a half weeks gives me hope that once the whole experience is over I’ll get my energy and spirit back fulltime. It’s a small glimpse of the big picture.

Scary medical mystery

2007-10-23T13:48:00.000-04:00

After four rejuvenating days in the desert, I flew home Sunday night under less than pleasant conditions. I anticipated the travel would be tiring, but the reality is, flying just is not the experience it used to be. Cattle class has become a case of one packed flight after another. Stuff ‘em in; keep ‘em moving.

I wasn’t in my bed until nearly 1:00 AM, but the next morning I was up and in the City bright and early to start my third treatment cycle. Everything went as expected; including the pastrami sandwich I treat myself to on days I plan to be at the Cancer Center for a long stretch. I pick one up at a deli along the walking route from Grand Central, reheat it in the center’s microwave, and eat it while I’m waiting for my drugs to be mixed and sent up from the pharmacy.

Nothing unusual or out of the ordinary until…

A few minutes after she started pumping Genasense through the IV, the nurse clamped the drug line so she could draw blood through a different line in the mediport. They’ve done it that way before. First they flush the line with a mild saline solution; then they fill a few tubes with blood; and finally they flush with saline again. Sometime during the third tube I started feeling heat flowing up through my chest and neck. My throat felt blocked. I was nauseous and dizzy. The treatment nurse called my doctor and the program coordinator nurse, and pretty soon the small cubicle was filled with medical personnel – I counted eight – staring at me with varying degrees of concern, confusion, and near-horror visible on their faces.

I heard someone say something about chest pain. “Not chest pain; it’s my esophagus,” I said. “My throat is closing down. I can’t swallow.”

But they hooked me up to an EKG monitor anyway. By that time, the heat had passed, leaving me soaked with sweat, chilled, and shaking so hard it made the EKG difficult to read. But even through all that, it was clearly not a heart problem.

I lay there for a while, looking like death warmed over, hooked up to oxygen and having various drugs pumped into me to counteract symptoms: a steroid to keep the breathing passages open, Benadryl to address a possible allergic reaction, Demerol to calm me down and stop the shaking. All the while, the women attending to me debated about what could be happening.

Could it be an allergic reaction, and if so, to what? It’s possible there was a small amount of Genasense drug pooled in the mediport, a small bolus that got pushed into my system when the nurse cleared the line to draw blood, a small amount that was too much to handle at once. Could it have been a similar situation with bacteria getting flushed in through the IV?

My doctor thought I might have “flipped a clot.” There is typically a small amount of blood that accumulates behind the mediport. That’s why they flush the line before starting an infusion and before and after drawing blood. It’s possible that a small clot got loosed into my lungs, which is why she made the executive decision to send me to the hospital for a CT scan.

There were other speculations while we waited for the ambulance. It might have been a reaction to the food; not necessarily food poisoning, but even just eating too fast. And most of the symptoms could be chalked up to a vasovagal reaction that commonly occurs when drawing blood.

This last option is making more and more sense to me. It's a reflex of the involuntary nervous system that ends up depriving the brain of oxygen. Blood pressure and oxygen level drop and people who experience this often faint.

More likely than not, we’ll never know the exact cause of the episode. My doctor aborted treatment for the time being – the plan is to hook me up to the Genasense pump next Monday and watch carefully in the meantime.

I spent the rest of yesterday in the hospital emergency room adding little to the body of knowledge and speculation. The CT scan showed nothing. Even if there had been a clot, it could have dissolved in the four hours waiting for the scan.

Fortunately for me, my daughter who lives in Manhattan was in town and able to meet me at the hospital. I called and she offered to have me spend the night at her apartment, which was a good thing for a variety of reasons. Number one of course, was the pleasure of my daughter’s company overnight! But it wasn’t until I was on the table getting scanned that I realized I couldn’t go home if I wanted to. I had left my computer bag at the doctor’s office before heading for the hospital. Truth to tell, I was pretty much out-of-it by that time and my doctor felt it would be safest locked in her office. Hours later, I remembered that my wallet, train tickets, and car key were also locked up safe… in the bag.

For all the bad things that happened yesterday, I feel truly lucky and blessed. The episode occurred in a place where I had all the medical attention I needed. My daughter was in town and available. And above all, I am healthy. My overall level of health has gotten me through a lifetime of events already this year. I am grateful….

High tolerance for frustration

2007-10-18T11:52:00.000-04:00

The last few months have left me shaken. That shouldn’t be too hard to understand. Being handed a diagnosis of stage IV cancer is unsettling, to say the least. All senses go on high alert and jumble into a confused mess of me-first signals.

My typical reaction to life hurdles is to approach, analyze, and come up with a plan of action when I feel prepared. In fact, I know there are some who see me as adventuresome and spontaneous, because once I’ve sufficiently digested the details, my actions tend to flow fairly smoothly and without much advance warning to the outside world. My apparent impulsiveness can extend to behavior others see as risky. The outside world doesn’t know how much I may have agonized to get to the point of action.

In fact, my own evaluation is that I frequently over-think my options. My mind works on problems all the time. I half-wake in the middle of the night with answers I may or may not remember by morning to puzzles I didn’t know I was trying to solve. All this brain work is exhausting!

I never completely lost the youthful sense that I can do anything I set my mind to. That, paired with my tendency toward unending analysis, has taken me to interesting places, both in the physical realm and in the business world. Travel was a natural part of what I did.

That was then; this is now. These days I don’t like being too far away from home or from my medical team. I worry how far I can get before being overcome by exhaustion. Not insurmountable problems, of course, but worry can certainly sap motivation!

So here I am in Arizona, at a beautiful golf resort in the desert with many friends who share a passion for technology. We’re here to learn and to enjoy each other’s company. I could easily have talked myself out of the trip given my current state of affairs, but I came. I’m thrilled to be here and so far I relish every minute of it! I hope to take home a renewed sense of perspective on how far my circumstances have weighed me down.

I owe a huge debt to the friends who encouraged me to come. Being among people who make me feel so special is tremendously curative. They are feeding my soul. They remind me that I may have cancer, but I can still lead a spirited, active life. That’s truly special!

How do they do it?

2007-10-17T11:32:00.000-04:00

I got to the airport this morning feeling somewhat carsick from the limo driver’s jerky driving style. Thinking some food might settle my stomach, I headed toward the most visible option, the Golden Arches. McDonald’s can’t possibly ruin a bacon and egg sandwich, can they?

Well, the bad news is that indeed, they can! They’ve applied the same level of salty mediocrity to the breakfast sandwich that they’ve used on hamburgers to successfully club them to death for forty-some years.

I remember when McDonald’s was the new kid in town, back in the late 1950’s. My mother would pack all five of her children into the family station wagon and drive the ten miles or so to treat us to 15-cent hamburgers. The even bigger treat was the milkshakes. We loved turning them upside-down to prove they were so thick they wouldn’t spill. It worked… most of the time. (Is that a good thing?!)

What I don’t remember about those outings was a complete lack of taste in the food. Is that only because I was too young to have honed my food discrimination? Or has McDonald’s gotten really bad over the years?

Fortunately, I have some really good food in my immediate future that will more than offset the memory of this morning's awful sandwich. I’m on my way to Phoenix for the Southwest Fox Conference (aka SWFox). The conference hotel is actually in Mesa, which is rumored to be breathtaking. Some very dedicated friends have spent the last year planning and preparing for this conference and it promises to be the FoxEvent of the year! It’s going to be several days of relaxing, networking, and partying with computer-industry friends, in a gorgeous setting, picking up pearls of wisdom about technology I love.

It’s difficult for me to get-up-and-go these days, given my limited energy, penchant to tire easily, and overall anxiety level. But this is a last fling before starting my next cycle of chemotherapy and I’m getting more and more excited as this plane approaches Phoenix. What a treat!

Moving right along

2007-10-16T16:19:00.000-04:00

I just returned from a visit with my oncologist to discuss the results of my most recent PET scan. As expected, the news continues to be excellent; my health with regard to this insidious cancer continues to improve. As on the previous scan, there are no metabolic hot spots, no activity in my lungs to indicate that cancer is growing or spreading. The largest of the remaining tumors has shrunk further, from 1.2 mm to 0.9 mm. Many of the smaller ones are gone altogether. The drugs are doing their dirty work and my body is flushing the detritus!

The radiologist’s report noted a pattern of “ground glass” in my lungs. This is nothing to worry about, according to my doctor. A mild lung inflammation that accounts for the intermittent fevers, limited stamina, and flagging energy I’ve had over the past couple of weeks. It could be from the drugs, or possibly something inhaled. She assured me there’s no possibility it’s cancer, but of course, I had to ask. She gave me a prescription to address it.

I’m on schedule to start a third treatment cycle next week. After that, my doctor’s cautious approach dictates that we add on a fourth round “for good measure.” This is not fun, but it’s the safe way to go, so I’m all for it.

Vision from another era

2007-10-09T15:28:00.000-04:00

I saw a young couple in the Cancer Center yesterday who struck me as jarringly out of place. I saw them both from the back, one sitting on a couch, the other on a chair in front of the computer available for common use in the waiting room. I couldn’t tell the gender of either from behind.

The one on the couch had a very full head of dreadlocks, long, tied back. It prompted a conversation in my head about why anyone would do that to their hair. The process that creates dreads is the same as that which produces felt. Once matted, it’s completely irreversible. Although they can be washed, they sometimes, as in this case, tend to look unkempt and unclean.

In some cultures, dreadlocks are a religious symbol, but this was a young white man. The hair was more likely a rebellious statement.

Before she turned around, the smaller member of the couple could have been a young boy. Her face was distinctly feminine, but her hair was scraggly, uncombed, flying off in all directions. She wore a baseball cap, backwards and with the brim askew toward her left shoulder. She was wearing a long, flowing, colorful skirt, and flip-flops that gave the appearance she was barefoot. She reminded me of women I saw in Brooklyn in the 1950’s, women my mother referred to as gypsies, though I never knew anything about them beyond their physical appearance, their pierced ears, and the babies they nursed as they rode along in the trolley cars.

This couple struck me as straight out of the sixties and seventies, a vivid reminder of my friends, the “dirty hippies” I ran with for several years. We were criticized for not making the effort to fit in, for not upholding common rules of appearance. The more we were criticized, the more we needed to show off how different we were. We were outcasts then, and this couple successfully captured the look and feel we aspired to.

Then a nurse came out and called the name of “Miss So-and-so” and these two walked into the treatment area to meet with a doctor. My heart broke. Still adolescents trying to find their way, these kids were having to deal with life-threatening events.

Cancer sucks.

R & R

2007-10-08T21:00:00.000-04:00

I started my second week without chemotherapy drugs today. I’m still tired so much of the time. It feels like a cliché to keep saying it, but it’s what I’m living with. I need to pace myself, even during this period of recuperation between cycles.

Last week I pushed myself a little too far and ended up spiking fevers three days in a row. I never felt sick enough to call it “flu”, but my joints ached. Chills accompanied the fevers and sapped my energy even more.

This weekend I visited relatives in Pennsylvania. I drove home this morning in time to catch a train into the City to have blood drawn. By the time I returned home, I was due a nap, and slept for three hours.

It was my first time in the Cancer Center in two weeks. I can’t believe how much I missed the place! I wasn’t scheduled to see anyone besides the lab technician, but the nurse who oversees my participation in the clinical trial saw me and stopped into the phlebotomist’s office to administer a hug and check up on me. My doctor also stopped by. These women have become family. My doctor said she dreamed about me. She couldn’t remember the details, but she woke up thinking she had to tell me I’d shown up in her sleep. That fits with the feeling I’ve had for years of a very primal connection with this woman.

It’s actually been three weeks since I saw my doctor. The last time I was there she was on her way to Barcelona to deliver a talk about the Genasense drug and the workings of this clinical trial. Months ago, when she was evaluating me for participation, she said she hoped to make me a “poster child.” I didn’t know at the time, but that conference was what she had in mind. My treatment went even better than anticipated, so she was able to wow the crowd with slides of my before and after scans, the pictures taken before and after my first treatment cycle. It's all so much mind-boggling technology, and I'm proud to be part of it.

End of Round Two

2007-10-01T17:00:00.000-04:00

Last night I took my last chemotherapy pills of the second treatment cycle. On October 14th I’ll get another full body PET scan to evaluate the effectiveness of this cycle, the progress made since the last scan in August. I’m already scheduled for a third treatment cycle.

I don’t have the same anxiety I had before that last scan. I’ve got good reason to expect more good news. The tumors were no longer metabolically active at that time. I anticipate that whatever is left of them is being consumed and discarded by my body, kind of like the old electronic arcade game, Pacman. In my mind’s eye, I see a little cartoon head traveling through my lungs, scooping up and munching cancer cells.

For the past week or so my side effects have been minimal. The one distressing thing I’ve come to expect is continual tiredness. My energy is limited, and when it’s used up, I ache through my whole body. My bones feel limp. It’s as if the energy has been completely sucked out of me. I frequently wake up tired after eight or more hours of sleep.

I was fairly active this past weekend. Saturday, my daughter and I attended a consumer electronics show at the Javits Convention Center. After that we walked around Manhattan some, and ended up at the Farmers Market in Union Square. Sunday, I went to a local art show with a friend and walked around the outdoor fair for a couple of hours. Today I paid for all that activity with bone-weary tiredness.

I hope the next three weeks of rest from medication will provide reprieve from some of the tiredness too. I need to rest up for the next go round starting October 22nd.