The Assertive Cancer Patient

More Fun With Tykerb

Well, I've been taking Tykerb, the new miracle drug that my health insurance plan doesn't want me to have, for a week now, and I've experienced Side Effect No. 1, Diarrhea, ever since day two, which would be the Friday after Thanksgiving.

I started taking the Tykerb, five pills a day, on Thanksgiving Day. Don't ask me why, except that I figured I would never forget when I started the drug. "Oh, yeah, T Day."

Months from now, I'll be able to answer that question without having to consult the Infamous Orange File Folder, where I keep copies of as many of my medical records as I can carry. (There are other files at home, and still more at three different cancer centers.)

Today, I'm feeling nauseous and just generally queasy, and also my vision is a bit blurred. I was also seriously short of breath when I walked Connie in the park today. The walk includes an uphill climb that is equal to about three flights of stairs. When I'm anemic, I usually have to stop and rest during the climb--that's my test for anemia.

Today I stopped on the bridge at the top of these hill for about five minutes. Just stood there catching my breath. I'm quite aware that these problems could be additional side effects of the diarrhea, especially the queasiness and upset tummy, but, just to be sure, I went back and checked my list of side effects.

These are on there, along with a warning to CALL THE DOCTOR:

Unusual tiredness

Shortness of breath

Dizziness

Guess I'll call. I also need to check and see if I can take zofran (I still have some in that pharmacy I call my bathroom, from the last time I had GI problems) for the diarrhea.

Maybe I'll e-mail instead. I really don't feel like playing the telephone game.

Do You E-mail Your Doctor?

I am a huge fan of e-mail, and of the Web in general.

I would rather e-mail friends for routine things than call, and even for not-so-routine things, like giving bad news about my cancer, I often prefer to e-mail.

Only a dozen people or so have my cell phone number, and I like it that way. In fact, it's getting to be time to get a new number, to again limit the number of people who can reach me day or night, awake or asleep, well or not well.

My home phone is the number I give everyone else, and that phone is turned off unless I am expecting a phone call from someone who doesn't have the cell number. I check the voice mail once a day, that's enough.

So it's probably no surprise when I say I prefer to e-mail my doctors.

Dr. Livingston, now in Tucson, gave me his e-mail address years ago, and told me it was fine to contact him that way. My radiation oncologist, Dr. Eulau, and I also e-mail occasionally.

Dr. Lee, my new medical oncologist, told me when I asked if I could e-mail him that it was a HIPAA violation and that he doesn't e-mail with patients.

Some other day, I'll get to the bottom of the HIPAA thing, but for today, I'm wondering how many of you e-mail your doctors?

Add a comment, or send me an e-mail: jeanne.sather@gmail.com

Or if you always call your doctor, and prefer to do it that way, tell me that too.

Waiting for the Phone to Ring
There are at least two problems with communicating with a doctor by phone:

1. The gatekeepers between you and the doctor.

2. The amount of time you (I) spend waiting by the phone for a return call--and sure enough, after waiting for three or five hours, I pick up the phone to a call that I DON'T want, just in time to send the important call from the doctor's office to voice mail. In that case, the game starts all over again at square one.

So, here's how it usually goes:

Call to Gatekeeper No. 1: The receptionist. I tell her what the problem is, and she passes me on to the doctor's nurse.

Call to Gatekeeper No. 2: The nurse. In theory, nurses are supposed to be able to handle many calls from patients without "bothering" the doctor. In practice, this usually means explaining the problem a second time, and then waiting for a call back.

Call FROM the Doctor. Sometimes the return call is from the doctor, at some odd hour when he or she returns phone calls (and I am usually asleep). Sometimes it is from the nurse, relaying the doctor's answer to my question.

More often than not, if the call-back is not from the doctor, I get the answer to a different question than the one I asked. It's like playing that child's party game of telephone.

With e-mail: I write my question. I have time to review my question to make sure it's clear, and then I send it. The doctor answers my question whenever he has a spare moment in his busy schedule, and no one wastes any time playing phone tag or leaving incomprehensible voice mail messages. (Believe me, I've been guilty of that.)

@ Jeanne Sather 2007.

Surviving the Holidays: The Toughest Question of All

If you have cancer, or someone in your family does, then I think the toughest question you face at the holidays is: "How do we handle Christmas (or whatever holiday you celebrate)?"

This question is especially tough, because, as several people have mentioned in the posts and comments about cancer myths, we assume that people with cancer can't handle an open, honest discussion of how they would like to celebrate, or not celebrate the holidays. (See Send Me Your "Cancer Myths" and More Cancer Myths)

So, in many families, there are a lot of phone calls on the sly, and whispering behind the cancer patient's back, about what to do for Christmas.

There is often an assumption that this should be a more lavish holiday than most, because it may be The Cancer Patient's Last Christmas. And everyone should make an attempt to be there, to "say goodbye," just in case, and yet:

How much energy does this cancer patient have? Will he or she be able to enjoy a family celebration that goes on for six hours?

Will the cancer patient feel loved if he or she receives 10,000 gifts, or just overwhelmed?

And just what kind of gift is appropriate for someone who has cancer, anyway? (If I were really mercenary, I'd put a Store section on my blog, selling only gifts appropriate for cancer patients of all ages, "Chosen by a panel of Real, Live Cancer Patients!")

Has the cancer patient given any indication that he or she is ready or able to "say goodbye" to family members? (If anyone did this to me, I'd go ballistic. I will say my goodbyes, or not, when I feel ready to do so.)

What happens if The Cancer Patient is still alive next Christmas? Does the family do it all again?

Having lived with cancer for nine years now, and coming up on my 10th Christmas as a cancer patient, I've given these issues a lot of thought.

Being the only adult in my family of three (me plus two almost-grown sons), I've been able to control the holiday celebrations, and that has mostly been a good thing. (See How I Cope, Christmas 2007 and My First Christmas With Cancer)

As you know, if you read my blog regularly, I don't give other people advice, and I don't appreciate people giving me advice, unless I've asked for it.

So let me say just one thing: If you have a cancer patient in your family, and you are not sure how much or how little of a holiday celebration this person will enjoy:

ASK.

It's that simple.

Here are a couple of trial questions:

"How would you like to celebrate Christmas this year?"

"What would you like for Christmas?"

No need to add "since you have metastatic cancer of the little toe and we don't know how long you will be with us"--the cancer patient gets the subtext, trust me.

For me, I want to celebrate Christmas pretty much as we always have. I don't want to do anything special because I'm sick. But I do want a simpler holiday, because I get tired easily, and because, as the only adult, most of the work of the holiday falls to me, with help from several loving friends, of course.

And I prefer that the people who celebrate with me do not mention my cancer during the holidays, and don't give me that pitying, "You have cancer and you're dying" look so familiar to all people living with cancer. (I have pretty much managed to cut everyone who does this out of my circle of friends, so I don't get this much any more. Don't tell me that I'm cold, or heartless--I spent years emotionally propping up friends who couldn't cope with the fact that I might die, and I am done with that. No more.)

I want my friends and relatives to celebrate with me because they love me and enjoy my company, not because I'm dying.

And I plan to be here next year, anyway.

@ Jeanne Sather 2007.

More Cancer Myths

A friend e-mailed me this myth:

One cancer myth that I consider outdated but that unfortunately persists is the myth that a person who is very likely or perhaps certainly dying from cancer can't face this reality and that family/friends should "shelter" the person by pretending it's otherwise.

Case in point: A 40-something woman who was about to introduce me to her father, a man who was standing outside the room and would become my patient in a health care setting moments later, explained to me he had liver cancer and then, with a look of doom, whispered that it had metastasized, as if he shouldn't hear this. From what I know about his situation, I trust he did know. But the woman's manner reinforced the myth nonetheless: "We are not to acknowledge these things in front of the people most directly affected by them; it's too much for them to face." 

I think this myth is more a reflection of the difficulties many of us have coming to terms with death in general, than it is about cancer in particular. But is there something about cancer that prompts this reaction moreso than other conditions expected to be terminal?

Certainly there's a place for sensitivity and for optimism and -- heck! -- for denial at times. But we do a disservice to anyone when we decide on their behalf that they aren't capable of dealing with something that's happening in their lives. I'd rather see us all try to be with each other through whatever happens than try to pretend it isn't happening.

I couldn't agree more! Thanks for sending this in.

For more Cancer Myths, go to my earlier post Send Me Your "Cancer Myths", and scroll down to the comments section.

Send Me Your "Cancer Myths"

I just wrote a post about "Christmas in July," and in writing it I realized that celebrating a holiday out of season for the sake of someone who is seriously ill with cancer is part of the cancer mythology of our culture.

I like that term, "cancer mythology," and I want to expand on it.

Amorette posted a comment to my blog the other day that includes another cancer myth.

She wrote:

Mom and I just watched "Christmas with the Kranks" (which, in my opinion, is one of the DUMBEST movies ever made). Even in the comedies, they have to sneak a cancer patient in for poignancy. I hate that. This was a neighbor who had cancer for the "3rd time, and we think this might be it." Of course, the woman is a veritable angel, given how close to heaven we assume she is. Never a harsh word out of her, she's the gentle and kind long-suffering victim. ...

I'm a little tired of being fed off of as a self- esteem-building charity case.

Amorette points to what I'm calling "The Myth of the Noble Cancer Patient"--long-suffering, never complaining ...

I'd like to expand on this idea, so please send me your cancer myths. Add a comment to this post, or send me an e-mail, jeanne.sather@gmail.com, whichever is easier for you.

Thanks.

@ Jeanne Sather 2007.

Surviving the Holidays: Christmas in July?

The family of a woman who died of cancer in October was talking about celebrating Thanksgiving early, so that she could be there.

But she died before they could do more than discuss the idea.

Another blogger, whose 20-year-old daughter died, also in October, also of cancer, just a week before her 21st birthday, asked his daughter if she wanted to celebrate her birthday early.

"No, that's cheating," she said, and her father respected her wishes. I don't know what he did with all the party decorations and gifts he had already bought. Threw them in the trash? Gave then to Goodwill? It's a painful thought.

Celebrating a holiday out of season for the sake of someone who is seriously ill with cancer is part of the cancer mythology of our culture. But I, for one, don't really understand it.

And, for the record, I do not want to celebrate my birthday, Christmas, or any other holiday "early" when I am dying.

@ Jeanne Sather 2007.

Surviving the Holidays: Holiday Tales III

My friend and fellow cancer blogger Amorette was born with cancer, grew up with cancer, and knows she'll be a cancer patient for the rest of her life.

On her new blog, she posts a wickedly funny but also sad piece about being hospitalized at Christmas and having all sorts of bouncy over-the-top do-gooders show up, sometimes trailing TV crews, expecting her gratitude and that "whole I-did-a-good-deed-at-Christmas thing."

An exerpt:

I'd be lying in bed, staring out the window, when suddenly a complete stranger in a sportcoat would come barreling in with a giant stuffed animal, On Behalf Of wherever. I had a giant white bear from Lazarus Department Store, a giant Mickey Mouse from one of the cable companies, and a dozen other plush animals crowding the foot of my bed. The bearer of stuffed tidings would try to keep her horrified stares at my halo brace discreet as I tried to muster the energy and enthusiasm to produce the gratitude she wanted. That's all they seemed to be after, really. The gratitude and that whole I-did-a-good-deed-at-Christmas thing.

Read: A Very Cancer Christmas, Part I- of Suzi and Cynicism

Amorette also posted a photo with this caption: "Me as a paralyzed, Decadron-puffed, radiated and bitter little cancer patient at age 3."

That bitter little cancer patient really grabbed me. As did Amorette's view from the other side of the "do something for the less-fortunate at Christmas" thing. Wow!

Surviving the Holidays: When You Have Cancer

First, there are the holidays as they are SUPPOSED to be. (Fill in your favorite Norman Rockwell or Hallmark card moment HERE.)

And then, there are the holidays as they really are: For many of us, especially women, a time of great stress, financial worries, fatigue (from racing around trying to get everything done), emotional distress over family relationships and obligations (We went to YOUR family's house LAST CHRISTMAS!...), and disappointment at not having the holidays live up to expectations.

And that's for HEALTHY people.

When you have cancer, or someone in your family does, the entire month of December resembles a mine field ... with you crawling through it on your hands and knees, just trying to make it to New Year's Day in one piece.

For whatever reason, we cancer patients tend to get bad news at the holidays. This may not be true, scientifically, but it sure seems that way. (I just found out last week that I need another three weeks of radiation therapy. My last treatment will be the Friday before Christmas. Ho. Ho. Ho.)

There's nothing like facing cancer to realize how little STUFF (i.e., typical Christmas presents--yet another necktie or box of bath salts) means. And money may be especially tight. But how do you break with family traditions? People expect gifts.

Just what do you get for a spouse who has cancer, anyway? No lifetime memberships, that's for sure.

And how do you cope with the REAL question that is on everyone's mind, although they probably will never voice it: Is this The Last Christmas?

Do you celebrate differently if you think this will be your (or your loved one's) last Christmas? Or do you just hide out, depressed, until the holiday is over? I'll be back tomorrow with some thoughts on these questions about The Last Christmas.

My radiation oncologist told me that he sees a lot of stressed, unhappy cancer patients at holiday time. His suggestion for coping? "Simplify."

He added, "Circle the wagons, and just do the things that are meaningful to you."

Makes sense to me. I've been moving in that direction for nine years now, ever since my first Christmas with cancer was such a disaster--I ended up hospitalized for depression shortly after the holidays. It was a meltdown to end all meltdowns.

Read more:

Surviving the Holidays: The Toughest Question of All

Surviving the Holidays: How I Cope, Christmas 2007

Surviving the Holidays: My First Christmas With Cancer

Surviving the Holidays: Holiday Tales I

Surviving the Holidays: Holiday Tales II

Surviving the Holidays: Holiday Tales III

Surviving the Holidays: Christmas Shopping

Surviving the Holidays: Black Humor

Surviving the Holidays: A Lego Christmas Story

Surviving the Holidays: Christmas in July?

Surviving the Holidays: Gift Giving

Surviving the Holidays: Christmas Cactus

Surviving the Holidays: More Gift Giving

Surviving the Holidays: A Christmas Wreath

Surviving the Holidays: Candle Making

Surviving the Holidays: Christmas Snow!

Surviving the Holidays: Everyone's Asleep But Me ...

Surviving the Holidays: What to Give

@ Jeanne Sather 2007.

Surviving the Holidays: How I Cope, Christmas 2007

Coming up on my 10th holiday season since my cancer diagnosis, I do things differently. (See Surviving the Holidays: My First Christmas With Cancer)

My holidays are simpler. Some traditions have been abandoned (the ones I find I really didn't cherish after all), and others that are important to me are embraced.

On November 12, I sent an e-mail to three of my closest friends, suggesting dates for holiday get-togethers, including days to work on homemade gifts, a day to get and decorate Christmas trees, and a date for our holiday party.

I sent the e-mail to these friends because these are the people I want to spend my holiday with, and because these are the friends I can rely on to help me with the work of Christmas. By sending it early, I get on their busy calendars.

Here's my holiday schedule, from Thanksgiving to Christmas.

Thanksgiving dinner: Laurie's house

December 2 (Sunday): gift-making at my house. I'm making strawberry jam from my own berries that I've frozen just for this purpose. It's a tradition going back three or four years now. Laurie is joining me, and she'll be making holiday decorations while I make jam.

December 3: My ONE holiday trip to a retail emporium, IKEA, with a friend who's coming up from Astoria to spend a couple of days. Notice it's early in the month.

December 8 (Saturday): Candle-making with Linda and Megan. This will be the third year we've done this together. We end up with beautiful candles to give away and to use during the holidays.

December 15: Get Christmas trees, with Monica and the boys.

December 16: Decorate Christmas tree, with help from the boys.

Two days during the week of December 17: bake cookies and make fudge.

December 22: Holiday concert, with Younger Son, Laurie, and Jo.

December 23: Holiday party at home. This is a very simple party: we play board games, listen to Christmas music (Johnny Cash and Kenny G's saxophone Christmas CDs), and eat holiday treats. Not much preparation because the goodies are already made, and friends always bring more.

December 24: Christmas dinner at Steve and Cathy's.

December 25: Open gifts with boys. Our tradition is to open gifts on Christmas Eve, but I am always too tired by the time it's time to unwrap the gifts, so this year I'm switching it to the morning. I expect the boys will complain, but they are 17 and 23, they'll get over it.

You will notice some things missing from this list:

No Christmas shopping--Too tiring and stressful. I shop from catalogues, make gifts, and pick things up as I see them throughout the year.

No gift-giving to friends and family who live at a distance--I can't manage this: all the wrapping and standing in line at the Post Office, plus the cost of overseas airmail for packages. If you're not HERE, you don't get a gift from me.

No Christmas cards--I used to MAKE my own cards, and send out about 50. Now I don't. What can I say? Something had to go.

Only ONE holiday concert. Usually it's the Seattle Girls' Choir, but this year we are going to hear the Seattle Men's Choir.

Only ONE holiday party (ours).

I never cook a holiday meal any more. We go to friends for Thanksgiving and Christmas Eve.

Finally, the most important thing, and the most difficult "rule" to hold on to: I resist adding anything more to this holiday schedule. Last-minute invitations to drop by for a drink, or to stack holiday parties back-to-back--I just say no.

It's hard, but I've had a meltdown at Christmas, so I know what can happen when you try to do too much.

As a result of all this simplifying, we have a calm, happy Christmas with the people we care most about.

Note: You may have noticed that there are no church events on the schedule. That's because I'm not religious. I consider myself a secular Christian.

Note 2: I haven't made plans for New Year's Eve yet, and I need to do that soon. I found out that my breast cancer (which I thought was in remission) had spread to my bones on New Year's Eve of 2001. So that is a tough, tough holiday for me.

@ Jeanne Sather 2007.

Surviving the Holidays: My First Christmas With Cancer

The worst Christmas of my life, no question, was the Christmas of 1998, the first Christmas after my breast cancer diagnosis and my first Christmas in treatment.

I had had a mastectomy in October, and it was Week Six of 12 weekly treatments with doxorubicin (Adriamycin).

This is an exerpt from Jeanne's Diary, which I wrote at the time:

Week Six
It's week six of chemo, and I've hit the wall: physically, mentally, emotionally--everything is going wrong.

The vein where I take my chemo treatment is bruised and burning. I lose my confidence and start thinking, "Why bother?" I'm depressed for the first time in the four months since I found out I have breast cancer.

Coincidentally, or maybe not, it is Christmas.

Christmas Eve, the day of my sixth chemo, I was too tired to open my gifts. I lay on the couch and watched the kids open theirs and left mine till morning.

I'd overdone it that day: I'd gone out to brunch, had my chemo, gone to a matinee of "A Christmas Carol," and had friends back to our place for eggnog, cookies, and sushi--all before tackling the gifts. I feel like the world's worst mother, snapping at my kids on Christmas Eve.

Christmas Day, with only a dinner with friends on the agenda, is much easier. But the next day, two days after my sixth chemo treatment, I feel seriously crazy. I'm panicked, wired, my head is crowded with frightening stuff--fantasies, delusions--that I can't explain. My friend Dana drives me to the emergency room, where I wait three hours to meet with a doctor who seems unsure of what to do for me.

The emergency room is crowded: two men with broken legs, a woman with chest pains, an old woman telling her life story, and the screams of a patient hidden behind double doors. Every time an ambulance pulls up the wait gets longer.

The doctor says he thinks I'm having a reaction to the Compazine I take for nausea, a drug that is also used as an anti-psychotic medication. He gives me two other drugs to take instead, but warns it will take a while to clear the Compazine out of my system. He gives me a printed sheet explaining the drugs, and I sign, signifying that I understand what I've been told. But when I get home I can't explain, either to myself or to my friends, why I should take these other drugs.

How bad was the effect of the Compazine? I lie on my bed Saturday after returning from the hospital, exhausted, but too terrified to sleep. I ask Dana to sit by me and wake me if I fall asleep. I am certain if I sleep, I will not wake up. This is crazy. This drug--or something--is making me crazy.

Inevitable Crash
On Monday, I gather up six pill bottles and go see my oncologist [Dr. Livingston] to make sure he agrees with the drug switch, and to get some reassurance. He says he's not sure my problems were a reaction to Compazine, but he pockets the Compazine anyway, and gives me back the substitute, Phenergan, prescribed by the emergency-room doctor. But he suggests that I hold off on taking it.

Instead, he suggests that we change two of my anti-nausea drugs when I get this week's chemo. He tells me I'll be fine. I know it's my job to believe that, but I can't.

Two days later, I'm back. "I'm not better," I tell my doctor, "I'm worse." We talk for quite a while, and the word "depression" comes up. Also the word "anxiety." I'm jumpy and fidgety and keep repeating that I don't want to be home alone with the kids, but there's no one to stay with us. "I'm scared," I say. "Of what?" my doctor asks. But I have no clear answer. He calls for a social worker, who smiles constantly while gently leading me upstairs to see a psychiatrist.

The psychiatrist and I talk until I am exhausted. When we are done, what he has to add makes sense: I am depressed. I am very anxious. The Compazine, and a double-tall mocha I had on an empty stomach Saturday morning, may have triggered the whole thing, but the Compazine alone was probably not responsible. And, he adds--the biggest irony--the fact that I was coping so well for so many months made this crash almost inevitable.

I go home with some little white pills for anxiety and some little pink ones for depression. I also have the promise that I won't have to take my chemo tomorrow. I'm not ready for it.

...Less than a week later, I was hospitalized for depression.

What Happened?
Nine years later, it's easy to see what went wrong.

I was overwhelmed.

I was working part-time and parenting full time while getting chemo with a pretty tough drug.

Then came the holidays, when some of the people I relied on got so busy that I hated to call them to ask for help. When I did manage to summon my strength and call, I'd feel personally rebuffed if I got an answering machine instead of a friend.

Meanwhile, some of the friends I reached didn't know how to deal with my depression. Not knowing what else to do, they pulled away. I got more and more isolated, and finally, a stopped-up toilet was the final straw.

Also, there is no question that I tried to do too much on the holidays: A theater performance followed by a party with friends followed by family gift-opening--all on Christmas Eve (and after spending the afternoon getting chemo)? I know better now.

@ Jeanne Sather 2007.