New Person Filling In

In Hi loyal Lucie fans. I am Jerry, her husband. Lucie asked me to post the blog whenever she couldn't, for whatever reason, so please bear with me if this one isn't up to the standard of the prior ones.We had a very relaxing and well needed weekend away at Abbott's Glen, our favorite clothing optional resort in Southern Vermont. Met some interesting people and gobbled Amy's out-of-this-world home cooked dinners and breakfasts. As for activities, mostly just sat around and schmoozed, though I did manage several dips in the pond.

Upon returning yesterday (Sunday) afternoon, Lucie started to feel progressively out of sorts. She woke me up around 3am to say she had a fever of 101.5, which, given her immune system being compromised by the chemotherapy, was something to get excited about. I drove her to the hospital emergency room (if you have to have a medical emergency, 3am is a good time, because the traffic is nil). After three hours for them to decide what to do next, they decided to admit her for tests and possible replacement of the bile duct stent, which was scheduled to be replaced this Thursday, anyway.

She is now scheduled for a CT scan tomorrow, around noon, followed by an ERCP to remove and replace the stent, if everything goes according to plan. Meanwhile, can't have anything to eat after supper tonight, until after the scan, a major bummer.The good news is that she was visited this afternoon by Dr. Nickerson, her oncologist, who reported that the latest blood test revealed that the cancer markers had declined from 200 to around 50. I don't understand any of it but it sounds like much needed encouragement.

Now I think I'll go have a snort of single malt.

Simple Pleasures

Last evening Jerry answered the phone and made faces at me that it was our favorite Worthy Cause Person. You know the kind: in the excitement of a political moment you sign a sheet and next thing you know the Worthy Cause Person constantly phones you because she's sure that you'd love to spend your Saturday evenings cold calling Republicans to get them to change their votes.... Anyhow, I could hear her impassioned voice on the other end of the line. Jerry made helpless gestures. I giggled.
Finally he said in a serious voice, "No, I just can't make any plans like that. You see, my wife has cancer.... Thank you.... No, not even that. You know, these days we just take life one day at a time." I waved my arms and legs in the air and let my tongue droop out of the side of my mouth. Somewhat choked up, Jerry said, "But of course we wish you well.... Thank you."
He hung up and said, "I just wish that sometime an insurance agent would call."

Minor complications -- don't panic

I waited until today to write so that I could bring you the latest. First of all, I'm feeling, as my grandma used to say, some better. The basins haven't been used for a couple of days and are almost ready to go back to their home under the sink, and I actually stayed awake all day yesterday. So there is definitely progress.
However, on Monday when they did my bloodwork and I saw the oncologist, he said that my liver markers were abnormal, either because of an infection or because the stent in my bile duct has clogged up again. In case it's an infection, he prescribed antibiotics. ($8.50 a pop for 10 days. It better be an infection at that cost.) In case it's a clogged stent, he got in touch with my GI doctor, who set up an ERCP to replace the stent. This will happen on the 3rd, giving me a bit of time to recover before the big Lebanon DH trip.
I've had this procedure twice before, and it isn't a tremendously big deal, though I can think of quite a few things I'd rather be doing. Mostly it means being knocked out for a day and a couple of days of lying around feeling useless.
So that's where things stand at the moment. Meanwhile, we're out of town for the weekend, back to Abbott's Glen, where we already have massages scheduled. It'll be good to get away.

Don't read if you aren't interested in yucky side effects

I've been doing some redecorating lately. It consists of basins tastefully scattered around the house. I'm not quite Martha Stewart: the basins are not color-coordinated. Of course, if I were really Martha Stewart, the contents would be color-coordinated. You can carry that as far as you want, but I'm not going to.
The only other bit of redecorating is on the part of the cats. They have been taking very good care of me, making sure that I'm not alone. On Sunday, my worst day so far, one cat or the other was lying next to me all day. That's as far as I remember, because aside from the nausea/vomiting, the other major side effect is that I sleep. And sleep. And sleep. You know how sleep is personified as a seductress, wooing you into soft dozing? Well, this is more like a rapist pouncing on you and suddenly it's two hours later and you aren't quite sure where or why you are.
According to the oncologist, this is normal, and I've done amazingly well so far. He prescribed a second anti-nausea med which can be taken in conjunction with the first one if I need a real whammy. One can be taken every six hours, the other every four. Those of us with compromised synapses shouldn't have to try and figure out the math. Let's see, if I took the six-hour pill at 1:45, and the four-hour pill at 11:10, and it is now 3:30, I'm okay for the four-hour pill again? Or was it 1:10 that I took the four-hour pill? And do I count the one I barfed up?
Apparently all of this is expected because all of the treatments have been cuumulative in their effects, so even though I'm through with the treatments themselves, the malady lingers on. Sorry.
In any case, the oncologist assures me that it may take a week or two, but I should be feeling a lot better very soon. I'm looking forward to that (so is Jerry, who continues to be tower of strength, reality check, and total support and joy in my life).

hair disasters

My hair is growing back, at least to my optimistic eyes, though Jerry is threatening to rent me out as sandpaper. But it strikes me that lack of hair leads to some of the funnier cancer moments. For example: this was actually taken at Christmas nine years ago, last time around. It is this wonderful, warm, creative picture of Jerry decorating my scalp with holly and ivy. It was almost immediately followed by warm (or at least heated) and creative threats of divorce, when he mentioned that he'd used permanent markers.
Poor guy spend the rest of Christmas morning in his workshop desperately trying to find a solvent that would take the holly and ivy off without removing the scalp.
(He succeeded, so we're still married.)



Then there was the friend who decided not to tell the elementary school kids she taught what she was going through, so she bought a nice wig and wore it constantly. At least, until the day she had playground duty in the springtime, and a blackfly got caught up between the wig and the head. (For those who don't know, blackflies are meaner and faster than mosquitos.) She couldn't bat at the wig, because it was so loose she could knock it off, and she couldn't shake her head for the same reason; she couldn't leave the kids; she ended by doing a kind of wiggly dance, which the kids absolutely loved. All the rest of the week, they kept asking when she was going to dance again.


Finally, one I just heard. It might not have struck you that when the hair goes, all the hair goes, including nose hairs. Nose hairs have an important purpose in life, basically to slow down the snot. Without nose hairs, there's no control. A friend told me about making a salad and just leaning over to toss it, when.... She insisted that she had to throw out the whole salad and start again. I hope she did.

Last day of chemo/radiation

And nothing more need be said (except, thank you, Cinda, for such a sensitive gift which so perfectly sums up the solemnity of the moment).

This means it's working, right?

I have to admit, the past few days have been physically rough. Although the nurses promised me that if I wasn't feeling any side effects by now I wouldn't, they lied. The low-grade nausea has kicked up a notch, and I've had several attacks of almost-vomiting and one that happened. I've gone on the anti-nausea meds all the time now, which leave me whacked out. Also flu-like aches and pains, and the continuing exhaustion. Yuck.
On the other hand, tomorrow is the last day!

Blogging

Last time I went through cancer I kept a journal, but it was back in the dark ages before blogging. I'm finding a lot of differences this time, and many of them have to do with how this blog helps me cope.

And therapeutic blogging isn't just for me. Check out the Scientific American article: http://www.sciam.com/article.cfm?id=the-healthy-type (thanks, Luther, for the source). I'm not especially interested in which parts of my brain light up when I blog, though I am glad that some do. The psychological and social aspects are more important to me.

I've wandered around the blogosphere a bit, checking out other cancer sites. My unscientific conclusion is that women blog about their cancers more than men do, and women with breast cancer blog more than anyone else. I'm not sure why, but suspect that some of it is generational. Men of an age to get cancer don't usually open up about their feelings in public. They were brought up to bite the bullet and be tough. The male cancer blogs I've checked are almost always written by younger men or else are clearly there to offer information. One exception was someone who saw his cancer as a means of bringing others to God. It reminded me of a friend who asked if I didn't see mine as a message from God. I said, "You know, I'd have paid attention to a telegram. Especially if it had been signed."

Women with breast cancer blog a lot. In our culture, mess with our breasts and you bring a lot of emotion to the surface. These blogs tend to be very emotional.
In any case, therapeutic blogs seem to be a new part of our toolkit in dealing with the disease.

I guess I'm part of a developing tradition.

Here's what I've noticed about what happens when I blog:

I feel better, both physically and emotionally. Everything settles. Writing here isn't a substitute for talking; I'm fortunate that Jerry is here and willing to listen, and even more fortunate that he knows when to listen and when to pull me out of a morass of self-pity. But blogging gives me a slightly different outlet, partly because you can stop reading at any time and my feelings won't be hurt (unless you make a point of telling me).

When I blog, I have to put my thoughts in some sort of order. It's a kind of mental discipline that my chemo-soaked brain needs.

The blog pulls me out of myself, even though writing a blog is about as egocentric as you can get. I spend time thinking, what have I learned from this that would be worth while for someone else who (God forbid) is facing cancer? What would be interesting? What will I want to remember? What questions do people usually ask?

What I never expected was that the blog would bring me closer to friends and family. I started it with the vague idea that it would help keep family up to date with my treatment and progress, but it has become much more. I follow other blogs that I didn't even know about and get emails from people that I didn't know well (or at all). I've made new friends, and recovered old ones.

By the way, your comments and emails mean a tremendous amount to me. I didn't want to put my email address right out here in public for fear of spammers and axe-murderers, but for anyone who'd like to write to me directly but doesn't know my email address, it's my first initial followed directly by my last name and the final part is ne.rr.com -- and I'd love to hear how you're doing. This conversation shouldn't be one-sided.

No Longer Part of American Culture

This is actually a major thing for me. While I was growing up, I missed large portions of our culture because I was living overseas, in a time and places where American movies and hit songs arrived a year or two after they'd died in the U.S., where letters took up to a month to arrive, and where fads might as well have been created on another planet. Then I would come back on home leave and be confused and amazed by what everyone seemed to take for granted. One summer it was Davy Crockett, and people wore fake coonskin hats; the next, it was hula hoops. I would madly try to catch up (I have just given myself an earworm of Davy, Davy Crockett, king of the wild frontier), but by the next home leave the U.S. would be on to something else, and again I'd be left behind.
I feel that way right now about women's magazines. While I ride the bike at the gym I revel in the kind of magazines that I never buy, but these days I might as well be a child again, not quite touching the culture that part of me, at least, would like to be part of.
Start with the covers. Lose Ten Pounds by Bikini Season. Lose Fifteen Pounds in Fifteen Days. Lose Half Your Weight in Half the Time. In the chemo room, we share strategies for maintaining weight or complain, "I lost six pounds last week. Don't know where it goes." (One of the reasons the docs are so proud of me is that I've kept my weight pretty stable through this. It hasn't been easy.)
On the cover is also a big, gooey picture of a big, gooey cake. I look at it with disgust. While my appetite is fair, my tolerance for rich foods is gone. And the portion sizes! How can anyone actually eat that much? Less than a year ago, I could, but now? No way.
Then, inside the magazine there are the features that I never quite related to before: "My husband has a shopping habit," or "Glamorous clothes that take you from the office to a night on the town", but there are also the ones I sigh over: "Curls, curls, curls!" or "Great styles for long hair." How about great styles for no hair?
I look wistfully at the articles that promise that I can have time enough to do everything I want to. I have the time; all I need is some energy. And there are the ones that tell me how to re-energize through power naps. I don't think they mean being out cold on the couch for an hour and a half a day.
On the other hand, there are still articles that speak to me, the ones about gratitude, about the joys of family, about affectionate pets. Show me a picture of a woman surrounded by family and pets, and I tear up happily. There's still something there I can relate to.

The Tiny Club

I have two pancreatic cancer buddies, one I just found out about yesterday and the other I've never met. However, they're both good role models, and I'm thankful for them.
The one I haven't met actually has cancer of the bile duct, which is what I may or may not actually have (the oncologists decided that since my pancreas is also affected they might as well call it pancreatic). He lives in Canada, and is being treated in Vancouver. We email back and forth, and though we haven't gotten into any of the deep questions, we've covered the less serious but annoying ones (what do you do about flaking skin? About anti-nausea meds that knock you out?) He's about a week ahead of me in treatment (no surgery planned) and therefore is just finishing up, so the next question he faces is: what do you do when you've done everything for this go-round and now all you have to do is live? I remember from last time around the nerve-wracking feeling that there must be something else I could do to nail this thing down forever. He seems pretty level-headed, so maybe this won't bother him.
The new buddy is someone I've known casually for years. She's a musician who lives in Keene and who, coincidentally, had breast cancer a while before I did. Like me, she was fully recovered and then got zapped with this. She had surgery in January and is doing really well. I talked to her yesterday, and she couldn't have been more helpful and encouraging.
One of the feelings that I have as I come to the end of this stage in the process is nervousness about the future, so being able to talk with someone who's been there and who's feeling good is a real gift.

Countdown

As of this morning (and by the way, Blogger seems to think that I get up and post even earlier than I actually get up -- right now it's 7:40) I have seven doses of radiation and three chemos left in this round. I finish up next Thursday.
Chemo: good news is that the oncologist doesn't think I need to make up the one I missed. And the nurse who did the chemo on Monday said that I've really done well on this. She went through the list of side effects I could have had, and I agree that I've been lucky.
Radiation: I now have three X's marking the spots where they will give me The Boost, next Tuesday-Wednesday-Thursday. In the locker room at the Y on Monday a toddler looked at me and said, "What are those?" I said, "Those are my blue marks," and she just said "Oh." If she had asked me why I had blue marks I was going to tell her, "Because they didn't have any green."
Don't know if The Boost will cause any extra side effects. I'll ask today when I go in.

Everyone's invited for virtual banana daiquiris on the afternoon of the 19th. I couldn't have gotten this far without you.

eyebrows

Not just eyebrows, but eyelashes, the peach fuzz that is a part of a human face, and all the more obvious patches of hair on our bodies. They aren't all gone, but they're compromised.
Frankly, I think I've been handling the lack of head hair pretty well. I went to Jo Ann Fabrics when they were having a sale on gauze, and I got enough for several scarves or head wraps. A friend (thanks, Lisa) gave me two custom-designed hats, and I knitted myself a turban thingy from bamboo yarn. I rather enjoy the chance for creativity. (Besides, the hair is actually starting to grow back. I have tiny quarter-inch wisps in places. The bad news is that the crop doesn't seem to have been evenly sowed, and besides, since it's all white you can't see much anyhow. In a good light I look a bit as though I'd butted into a spider web.)
But that leaves the rest. The good news is that I haven't had to shave my legs or under my arms for two and a half months. And let's not even think about bikini waxes, because I certainly don't have to.
The face is different. You can't wrap cloth around the face, at least not in this culture, and without eyebrows and eyelashes the whole character disappears. What annoyed me was that the hairs stayed on long enough that I thought they wouldn't fall out, but suddenly just this past week they've been going.
I'm wearing a lot of makeup, for me at least, these days. Without it I'm pale enough that if you set me up against some woodwork, I'll fade right in.
Yesterday, though, it really struck me that I have to draw eyebrows over my eyes. A face without eyebrows has a the look of someone trying to suppress strong emotion -- or the look of someone with no emotions. I played with the eyebrow pencil, drawing in the diagonal slashes of an angry samurai, little clown circumflexes, Brooke Shield dashes, 1940's single-stroke arches.... They all looked remarkably silly. I finally decided on the non-commital feathery strokes that the women's magazines and cancer sites recommend. By noon they've faded, and I'm back to looking like the Betsy Wetsy doll I had when I was four. I don't know if I disliked her more for her incontinence or her lack of expression.

Attitude

First of all, some background reading: http://www.nytimes.com/2008/06/01/health/01stoical.html?_r=2&pagewanted=1&oref=slogin , and thanks, Lin for the source.

Don't get me wrong, I love being told I have a good attitude, and I also love the idea that having a good attitude can somehow help me deal with this. I also have to admit that most of the time it's pretty easy to have one. I've listed before all of the kinds of support that I have, from access to good medical care all the way down to people I see on the street who give me a thumbs up. Certainly all of you who care enough to read this. It would seem like letting the side down to complain.

It also helps that most of the time I feel physically well.

On the other hand, there are days when I feel physically or emotionally like crap. This isn't one of them; when it all feels like too much, I can't write. Instead, I do my usual thing of hiding in a book that I've read many times before. Then I pull myself out enough to do some mindless knitting, and after a while I'm back to whatever normal is these days. Or if it's mostly physical, I lie on the couch with a cat on my stomach, which is definitely therapeutic.

Something I liked in the article was the point about the metaphors we use. I've never thought of myself as in a war or even fighting. The war metaphor always reminds me of when we were trying for me to get pregnant with Cinda, and Dr. Stobie explained, "You know how it is. In a battle, not every bullet kills someone." I got another OB/GYN.

The words Jerry and I use most are "dealing with it." I like that. You can deal with a clogged sink, a flat tire, the upset parent of a student. It's an annoyance that you can ... well, deal with, presumably successfully and without added trauma. And then go on.

The Newbie

The magazine selection in the radiology waiting room is stereotypical: Golf Digests so old that they mention the up-and-coming unknown, Tiger Wood, Good Housekeeping with a special section on Christmas meals for forty, and specific waiting room magazines with names like Survive and Cure, all of which make me certain I must be in worse shape than I thought. Maybe the reading matter is deliberately chosen to encourage conversation, because after a few days of leafing through the magazines you're ready to talk to anyone. This is where I found out where the Lung Cancer Woman bought her cane, and that the dapper man with the hat isn't going to quit smoking "because it may be in my brain, but at least it isn't in my lungs."
So of course today when someone new came in, I leaped into conversation with him. He said, "You know, it's my first day here," and when I looked more closely I saw that shell-shocked look in his eyes. He went on, "It's here," patting his jaw, "But that's the lymph node. They've been testing me for two months, but this is the first time they're actually going to do anything."
"They really go to town on the tests, don't they. We're so lucky to have access to all of this technology. When they finally can start treating you, they know exactly what they're doing."
He said, "I don't know what any of the side effects are or anything."
If he was in for treatment, then I knew that he'd been told about side effects, but some things take a while to sink in. I was all set to give him my totally biased rundown on what to expect, but they called me in for my treatment, so all I could say was, "You couldn't be in a better place than this." I thought he looked marginally more hopeful.
Sometimes I forget that this diagnosis is a shock to almost everyone. You deal with it in your own ways, and that's what I want to write about next.

I've got a date!

Quite a few years back, that title would have had a different context, but I'm happy with this one.
Saw the oncologist yesterday, and what he basically said was that I have sailed through the chemo/radiation, though what he actually said was that I had "handled it in an exemplary manner." He would have expected much worse side effects than what I described.
Jerry started pushing him on what happens next. The doctor dashed his hopes that all of this would have shrunk the cancer down to nothing so that surgery wouldn't be needed. In any case he pointed out that they'd want to operate to make sure they've gotten everything. On the other hand, my lack of further pain or other major problems suggests that at least the tumor hasn't grown. This isn't as pale a statement as it sounds, because pancreatic cancer is so aggressive that it can outrun the therapies.
In any case, we decided to look ahead, and I now have an appointment at D-H Lebanon for a CT scan followed by a consult with the surgeon on July 7, about two weeks after I finish this therapy.
Which means that maybe an operation will really be possible. I've tried to look ahead without extreme hope or fear. But since I saw the doctor, the hope has been winning.

Cancer Survivors' Day

Yesterday was the annual Cancer Survivors' Day celebration at D-H Keene, and I went over and got thoroughly depressed.
There were several big white tents, free hot dogs and hamburgers, clowns with twisted balloons to entertain the kids, Morris dancers accompanied by an accordian, all of the nurses and a couple of the doctors volunteering their time. Even the weather cooperated.
I'm still trying to figure out why it all brought me so far down.
Jerry wondered if it was because there was such a large crowd of people with cancer, but I don't think that was it. I know we're a big crowd. What is it the statistics say? One out of four Americans get it? Are touched by it? Die of it? (The two important things to remember about statistics is what subject they refer to and what the numbers refer to.) In any case, the crowd probably should have been even larger. It wasn't that the crowd was so grim, either, though they were enjoying themselves in a particularly New England way (without cracking a smile).
Maybe it was because we were being treated as patients again, being fed and entertained without anything expected of us or any chance to contribute. The celebration is a nice idea, but it puts patients back into the passive role of recipient. I love doing the survivor's walk during the Relay for Life, and, in fact, the whole Relay, because there's something useful coming out of it, publicity and funding.
On the other hand, when I told Cinda about my reaction to the Survivors' Day she said, "Of course you were depressed. Morris dancers and an accordion? That would get to anyone."
(Apologies to the Morris dancers and accordion afficionados who read this.)