A Post from Rachel & Carla

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

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

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

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

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

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

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

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

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

MRI

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.

Toothache

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.

Chance encounter

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

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

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

I’m sick again.

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

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

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

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

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

“Neither do I.”

The irony wasn’t lost on either of us.

Airtime

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

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

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

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

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

Trial run

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.

Tingly toes and fuzzy brain

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.

Dream connections

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

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.”

Progress

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

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

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

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

“That’s the attitude that cures!”

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

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

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

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

Unrestricted membership

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

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!

Lose the small talk

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.

Boring

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

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

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

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

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

Survivor guilt

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

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.

Fix me

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.