New complication

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

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

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

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

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

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

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

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

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

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

“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

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

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

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

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

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

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

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

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

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

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

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

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

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

“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

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

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

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

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

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.

A life measured in Cuisinarts

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

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

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

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

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

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

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

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

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

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

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?

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

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

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

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

“Did he have melanoma?” I asked her.

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

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

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

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

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

Straight talk

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

“How are you doing?” she asked.

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

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

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

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

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

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

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

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

People watching

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

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.