The Assertive Cancer Patient

Explaining Myself: The Very Short Version

 For those of you who have been reading my attempts to explain how I cope with my cancer--originally written for my friend Julie, but also written for all of you--here's the very short version:

It's a choice. 

It really is that simple, but also that hard. 

I used to get angry, back in the day, when people said things to me like, "I don't know how you do it. I could never cope like you do." 

And my answer was always, "What other choice do I have?" 

The truth was, being me, I didn't have another choice. But what gives me strength is knowing that it is always my choice--my choice to fight, my choice to be happy, and my choice to live as well as I can with this ugly disease. 

Here's the long version: Helping Julie: My Long Answer

The photo: I took this photo at Mesa Verde in November of 2008, during the famous road trip with Car Guy, Car Guy Junior, and Constant the Wonder Dog. That's the trip where we lost the Great Salt Lake. See: A Rerun: Road Trip!

@ Jeanne Sather 2010. 

Helping Julie: My Long Answer

 My friend Julie e-mailed me on Thursday and asked for my help. 

The subject line on the e-mail kinda said it all. She wrote: "How do you do it?"

I've been thinking about Julie's question almost continuously since Thursday. I've written a couple of short posts that, I hope, each contains at least part of my answer, and Julie and I have e-mailed back and forth several times as well. 

So I know what she wants to know. And I hope I can explain myself in a way that will be helpful to her. 

Not Just the Good Times

When I started writing this blog back in 2006, I made a promise to myself that the blog would be as honest as I could make it. I had no desire to become another one of those "inspirational" cancer patients--the ones who never complain, never cry, never whine, and who seem to take care of everyone else around them while fighting for their lives with one hand (the other hand being occupied in supporting everyone else).

I've written about meltdowns (and I've had some doozies), medical billing nightmares (on-going), dating, death, and depression, to name just a few topics. I've also used this blog to fight back against things that offend me, like pink ribbons. 

Along with writing about both the good and the bad, I did not want to set myself up as some kind of know-it-all, dispensing wisdom about life with cancer to all and sundry. As you know if you read my blog regularly, I refuse to tell other people what they should do. And I don't like people giving me advice either. 

Now, that doesn't mean I haven't learned some things about living with cancer. I have, of course I have. But I only present this information and opinion as WHAT HAS WORKED FOR ME. I don't claim it will work for anyone else, although I do think that it is useful for us cancer patients to compare notes on all sorts of topics including the broad area of "coping."

Cut to the Chase

OK, let me see if I can outline what I do that might help Julie. 

1. Me First

When I was first diagnosed, my sons were 8 and 13, and I worked full-time or close to full-time for years after that initial diagnosis. I couldn't put myself ahead of my sons in those days, but I certainly put my needs ahead of my work. 

Now that the boys have grown into young men, I put myself first. 

2. My Priorities, No One Else's

This is related to No. 1 above, but slightly different. No one else's priorities come ahead of mine. Every single day, I decide what I am going to do that day, and I don't let anyone else set my agenda for the day, unless I agree. 

I've canceled treatment appointments recently because I got up in the morning and decided that I didn't want to do that on that particular day.

I don't know how I would handle this if I were married--but I'm not--because I do think couples need to make decisions together, generally speaking. However, I've seen a lot of couples where the wife has cancer and she is still putting her husband's priorities ahead of her own. That would not work for me. 

3. I'm Driving the Boat

I wrote about this topic recently, so let me just link to that post: Oh, For a 'Sense of Control' ...

4. The Two-Year Plan

Now, I've had two-year plans for about 10 years now, since shortly after I was first diagnosed, and I usually revise my two-year plan about once a year. It's not a formal, written plan, it's in my head. 

The point of the two-year plan is this: Once you know you have metastatic cancer, you stop saving for retirement, or at least I did. My life expectancy at the time my cancer spread to my bones was two to three years. I needed a way to balance planning for the future with living in the moment, and the answer, for me, was to not ever plan more than two years ahead. 

If you are more pessimistic than I am, you might try a six-month plan. Or a three-month plan. 

5. Front Loading My Life

Front loading is the "eat dessert first" school of thought on life with cancer. Or to go even further, eat dessert early and often. 

I don't know how long I will live, so I want to do the important things first. But I also want to live in the moment, and enjoy the small things--gardening, a bowl of warm pudding, rain. 

For more: Front Loading My Life

6. Don't Hide From Fear, Pain, or Other Bad Things

I have to be able to look the bad things in the eye. These include my own fears: of death, of pain, of leaving my children when they were so young, of losing my dignity. 

With the help of an excellent therapist, I have looked at and talked about all the bad things that can happen to someone who has metastatic cancer. I have discussed suicide, and I've educated myself on the topic of suicide, so I know what resources are available to me if I decide that I've had enough. 

7. I am not a victim.

I refuse to allow myself to feel self pity. I am not a victim. 

I don't want other people to see me as a victim, either, and I HATE pity. I see it in people's eyes on a pretty regular basis, and I've gotten really good at deflecting this kind of pity and sympathy, because I DO NOT WANT TO HEAR IT. 

Of course, I have days when I feel sorry for myself, and on those days--if I can't distract myself--then I will give in to it. I'll turn off the phone and go to bed with a stack of books and my favorite comfort food of the moment, and I will just snuggle down and stay there until I am ready to face my life again. 

A day like this once in awhile seems to help prevent a major depression. I haven't had a serious depression since 1999. 

8. I Choose to Be Here

Once you've considered suicide, you know that you are alive because you have chosen to live. That's where I'm at right now. Last fall, I was very very sick and ended up in the hospital for eight days. I thought at that time that it might be the beginning of the end for me. But it wasn't. 

So I'm still here, doing the best I can, honestly enjoying my life. Who could ask for more?

Here's the first post in the series for my friend, Julie: Helping Julie

A note about The Red Corvair: I still own The Red Corvair, but I don't drive it much in the winter because it is a convertible. It's built for good weather, and with the top up, visibility is poor. Also, I can't drive it now in any case because of the pain in my hip and pelvis. The car has a standard shift and manual brakes and steering, so it is a lot of work to drive. 

But I expect to have the car out come summer. I want to take it to a drive-in movie. We still have one drive-in about an hour from Seattle. I've never been there, but it's on my list. 

@ Jeanne Sather 2010. 

 

Helping Julie

I have a number of friends--maybe a dozen--mostly women, who I only know through my blog. 

Most of them are living with cancer, typically with an advanced cancer, as I am. And even though I have never met these women face to face, or talked to them on the phone, they are very important to me. We share a part of our lives that we can't--or don't--share with our loved ones back in the real world. 

One of these friends is Julie. 

Julie pops up on my blog now and then, and she she e-mails me, not often, but regularly. I know that she has two lovely granddaughters, adopted from China, because she had me make bracelets for them. I know that she is a writer. 

And I know that she has advanced ovarian cancer. 

Here's one post about Julie:

Living With Metastatic Disease

And, on a lighter note, here are the bracelets I made for Julie's granddaughters:

Bracelets for Little Girls

Why am I writing about Julie today? 

Well, actually, I'm writing this for her, a subtle distinction, because she e-mailed me the other day and asked for my help. 

See also: 

What Julie Needs

Helping Julie: My Short Answer

Helping Julie: A Trip to Hawaii

@ Jeanne Sather 2010. 

The Lady With the Cane

Let me say, first of all, that I just don't see myself as The Lady With the Cane. 

Not my self-image. 

However, I have been using a cane for a couple of weeks now, because of the pain in my left hip. I need the cane to get out of bed in the morning, and for the first little while after I'm up because I can't put all my weight on that leg. And I need it each and every time I get up from a chair or the couch. 

This situation seems likely to continue. 

I see Dr. Eulau this afternoon to discuss the problem with my left hip, because at this point I don't even know if there is active disease there. Seems like there must be, but I don't know for sure and he doesn't either. 

Given this situation, I may have to bow--not gracefully, but with my own sense of Assertive Cancer Patient style--and accept a cane. But not just any cane.

I want to be The Lady With the Totally Cool Cane. And I've found the cane, online, of course. To top it off, this cane has a bakelite handle. Those of you who know my jewelry will know that I am fascinated with bakelite right now and making a lot of pieces with vintage bakelite buttons. (See: Charmed Bracelets: Bakelite) 

The cane--vintage, of course--is topped by a bakelite parrot. How cool is that? 

I snatched the photo above off the seller's Web site. Since I'm buying it, I figure he won't mind.

Can I afford this cane? Of course not. It costs $650, including the shipping. But I'm hoping that my friends and readers will chip in and help buy the Assertive Cancer Patient her signature cane. 

By my math, if thirty-two and a half friends and readers send me $20 each, that will cover it. If you make a donation through PayPal, please add a note that it is for the cane. 

Thanks, everyone. 

@ Jeanne Sather 2010. 

Writing as Therapy

Here is a version of the talk I gave yesterday in Omaha, Nebraska. 

How many ways can you say scared? Terrified, apprehensive, afraid, nervous, freaked out--just plain scared.

For the two months since my breast cancer diagnosis, I've been riding an emotional roller coaster over the prospect of undergoing chemotherapy. Chemotherapy. You know, the treatment where they pump you full of poisons to kill cancer cells and your disease. That treatment.

I had a mastectomy about one month ago, and the surgery was not nearly as frightening to me as the thought of chemo. I was most upset by the thought of losing my hair--a billboard that shouts "I have cancer"--and the fatigue. "How fatigued?" I asked endlessly. "Will I be able to work? Play with my kids? Keep things running at home?"

I began writing Jeanne's Diary—my first “cancer writing”--for the OnHealth.com Web site in the fall of 1998, just a few weeks after surgery to remove my right breast and shortly before beginning chemotherapy.

In the beginning, I wrote it as a way to make money. I needed to support myself and my children during my cancer treatment and recovery, and the opportunity was there. I’m a writer, it’s my life, so why not?

 The diary quickly became so much more.

For me, it was therapy. I wrote each chapter “in the moment”–-in the too quiet hours of the early morning when it seemed the whole world was asleep but me, or whenever I was overwhelmed. I pounded it out as fast as I could type.

Now, I want to read you one perfect, profound sentence, from one of my former writing students, who suffered a brain injury. 

I suppose everyone has some event that’s so central to their story that other things are ordered either before or after.

That's certainly true for me. Everything in my life is either BC (Before Cancer) or AC (After Cancer). I don't think I'm unusual in that.

If I had not been a writer, I think I would have gone bankrupt early on in my years of living with cancer. I worked, and made a decent full-time salary, for seven years while undergoing treatment almost continuously.

It was only in January 2006 that I hit the wall with the chemo drug I was on (oral Xeloda) and finally decided that I needed to go on Social Security Disability.

Until that time, however, I had been able to keep going financially, mostly by writing about cancer.

When I decided that I needed to go on disability, I was surprised to learn that I could continue to work part-time. Disability allows me to make up to $830/month, net, with no cut in benefits.

I began writing my cancer blog in October of 2006, and I have blogged daily since that time.

There are different kinds of cancer blogs, for example:

1. Primarily for family and friends

2. To fight the isolation of having a rare type of cancer

3. Screaming at the universe.

Why I Blog

I think what I have to say is helpful to other people with cancer.

The blog also gives me a way to process what is happening to me personally. And sometimes just to rant about cancer. Because there is plenty to rant about.

My goals for my blog: 


* To be the most widely read cancer blog in the U.S.

* To influence public policy on issues such as health insurance and access to care.



* To change people’s thinking about health and illness. “As long as my kids are happy and healthy….” “As long as I have my health…” 

My blog has given me incredible friends, like Teri. 

One of the things I’m most proud of is our joint posts, in which a group of cancer bloggers wrote about the same topic at the same time. Some we did were “meltdowns” and “health and happiness.”

That would give our readers a half dozen different takes on the same topic, and give us some synergy (I hate that word, but what can you do?) in our blogging lives.

Cancer Cliches

One of my goals as a writer who has cancer has been to kill off the terrible cancer metaphors, one by one, and replace them with words that are true and honest. 

Let's start with the cliches: "Died after a long and courageous battle with cancer." Everyone who dies of cancer is automatically brave. Read the obituaries, you'll see what I mean. 

It's gotten so that I'm afraid to be a coward. It might show up in my obituary: "Jeanne Sather died Wednesday after a brief, cowardly skirmish with cancer."  

I've been working on improving the language of cancer for almost as long as I have had cancer. In the meantime, I've written my own obituary, which says that I DIED, not "left us" or "passed over to the other side."

Celebrating 11 Years of Cancer Treatment

This month, I am celebrating 11 years of almost-continual cancer treatment.

But I have to celebrate this, because it is my life.

This is not the life I expected to have. (I expected to live to be 96 or older, with few health problems, as my grandmother did.)

This is not the life I wanted. (Much more travel, more adventures, more romance, and more writing achievements were on my agenda.)

This isn't even the life I "deserve," whatever that means. I don't think karma dealt me the cancer card because of something I did or didn't do. 

But this is sure the life I got. So, until I'm ready to call it quits, this is the life I'm living.

Support this blog:

@ Jeanne Sather 2009.

More on Brassage

The Good Morning America piece on the brassage, for which ABC flew me to NYC for an interview, has gotten lots of pick up. Thanks, Teri, for finding these for me. (Teri, the Cheeky Librarian, is a demon researcher.)

WebMD: The Brassage for Wellness?

Chicago Sun-Times: 'Brassage' pulled from market after 'GMA' report

Your Tango: The Brassage Is a Scam

Examiner.com: Buyer Beware of the Brassage

KSTP.com: A bra that improves your health?

WZZM.com: Need a Brassage?

Associated Content: The Brassage and Other Medically Dubious Clothing

The Inquisitr: The Brassage Bra: Little Support for Self-Massaging Lingerie

College News: The Brassage

Wow. All this coverage is a good example of the "food chain" theory of journalism: A national media outlet, like ABC news, does a story like this, and within the day, dozens more newspapers, TV stations, and online news organizations have done copycat stories. (These are easy to do, since they require little new reporting. I didn't get a single phone call or e-mail about the brassage from any of these folks.)

The food chain also works from the bottom up: For example, when a blogger breaks a story that is first picked up by a hometown newspaper and then works its way up the food chain to the wire services and national media. It's fun to watch if you're a former mainstream journalist like me.

@ Jeanne Sather 2009.  

The 'Brassage' Interview Airs!

I'm putting this one under "quacks." Also under "breasts and boobs" and "cancer myths."

The interview that I did last December with JuJu Chang at ABC finally aired this morning, and I think it was a good piece. The story was about a product called the "brassage," which I blogged about quite awhile ago. The manufacturers of the bra claimed that it could prevent breast cancer, which of course it can't. 

When interviewed by JuJu, the woman behind the bra said she didn't claim that, but asked "could it hurt"? 

Well, that's not good enough, as I said in the piece. 

Watch it online: Wellness Lingerie

SORRY, the video clip no longer seems to be available online. You can read a print version at the above link, but I'm not quoted. Bummer. 

See also: More on Brassage

And a more personal take on boobs: Retiring Jabba

Support this blog:

@ Jeanne Sather 2009. 

From the E-mail Box

Teri, the Cheeky Librarian, e-mailed me about Wellsphere last night. Apparently, she got the same e-mail that many of us have received--asking us to let Wellsphere use the entire contents of our blogs: FOR FREE. 

I declined the offer, and I'm sure Teri will too. 

For more on Wellsphere, see: 

Wellsphere: Use the Contents of My Blog for Free? (I Don't Think So...)

Health Central Buys Wellsphere: Let the Exploitation Begin!

Recycling Drugs

Ellana, who is a regular reader of my blog, sent me info on a place in Reno that will take unneeded meds and pass them on. 

It's a clinic that serves the homeless, so it looks like they will take medicines other than just cancer drugs. Here's the link: Health Access Washoe County

I'm going to contact them and find out more about what they do and about how to donate meds. 

A majority of states have passed legislation to establish drug repositories, but the majority (of that majority) still don't have drug repositories up and running. I've written quite a bit about this issue, and you can find the posts here: Recycle Drugs

Glamour Cancer Blog

I saw a small spike in my readership stats for the past couple of days (about 800 page views a day, up from my typical 600 or so). Then I got an e-mail that explained why. 

A cancer blogger on the Glamour magazine Web site linked to my blog, and that sent a few new readers my way. 

I was, I admit, surprised that a magazine like Glamour HAS a cancer blogger (after all, what could be less glamourous than cancer? I mean, let's be honest here), so I e-mailed her and asked a few questions. Her name is Erin, and she was already working at the magazine when she was diagnosed with cancer--at age 23, yikes!--and was asked to write about it. 

Here's the link: Life With Cancer

A Helpful Reader

A new reader sent me a donation (thanks!), and also wrote and offered to help readers who might be having trouble with their health insurance and prescription drugs--wouldn't that be, like, most of us?

Here's what she had to say:

 I work in an oncology clinic pharmacy. I have been a pharmacy technician for six years.  Our pharmacy just opened six months ago and I am the only technician.  

Unfortunately, I know all too well about the insurance companies and their prior authorizations being denied and the extremely high copays for patients for the drugs the insurance will actually cover.  

I just wanted to offer any support or information to you, if I can ever help. 

You seem to be know the game pretty well though.  I am not suffering from cancer or even ill,  and I have a hard time dealing with these manufacturers and insurance companies everyday. But I do know ins ands outs of most of the copay assistance programs. Also if any of your subscribers have any questions regarding their insurance requiring them to use mail order they can usually get a one-time override at a local pharmacy ;so they can go ahead and start their therapy. 

I actually have two patients right now who are trying to get Tykerb; one of which I am getting copay assistance for through GlaxoSmithKline's Committment to Acess and the other is a Tykerb PA which was denied because it was not used with Xeloda. Let me know if there is anything I can do to help.

 

You can bet the next time I get a drug question from a reader I'm going to ask for help. If you do have questions you'd like to ask our expert, just send them to me and I'll forward them on: jeanne.sather@gmail.com

@ Jeanne Sather 2009. 

Northwest Hospital: Now THIS Is Nice ...

As I mentioned in an earlier post today, I had a voicemail message from an administrator at Northwest Hospital, where I go for cancer treatment, saying she wanted to talk to me about something I'd written on my blog.

I assumed it was about the posts I've written about being sent to collections, or possibly about the person in the billing department who called the friend I had listed as an "emergency contact" when she thought I wasn't paying off my bill fast enough ... That tactic, of course, is designed to embarrass me. 

I also assumed, I will admit, that this person was going to be defensive about the hospital's behavior, but NO. 

The woman I talked to, Janet Walthew, herself a cancer survivor, apologized. Amazing. 

She said my bill should not have been sent to collections, and she said she'd call the collections agency, Renton Collections, to make sure that they forwarded my charity care application to her. 

Wow. How nice. So thanks, Northwest Hospital. 

We'll see what happens with the charity care application, but I certainly qualify for a write-off. 

See: Applying for Charity Care? Be Careful

Would it be rude to suggest that the behavior of the folks at Northwest Hospital is, at least in part, motivated by the lawsuit now in the courts against one of their collections agencies? I'd like to think not ... 

See: Charity Care in Washington State

@ Jeanne Sather 2009. 

20/20 Interview Airs Friday

This is so funny. 

I taped an interview with ABC's 20/20 in December, and it's finally going to air on Friday night. 

That's exciting, but before I publicize it, I wish I knew what I was going to say on the air. 

That may sound funny, but my taped conversation with Juju Chang lasted about half an hour, and I really don't know if 20/20 is going to air just a quick 20-second clip, or a longer, more involved piece. 

One clue: Once I got back home from NYC, the producer e-mailed and asked me to send them some of my family photos. That makes me think: Longer piece. 

I don't think I SAID anything that I'll be embarrassed to see on national TV, but I do tend to make faces when I talk, not very flattering faces.

What I hope comes through is how I feel about living with cancer. We'll see.

Tune in if you can, and let me know what you think. 20/20 is on ABC at 10 p.m. ET, Friday. 

By the way, Juju Chang was really great. Lots of good energy. We talked about our sons and their education. 

Oh, and pay attention to my clothes. I'm wearing a top that Jacqueline made specially, just for me to wear on 20/20, and a pair of amber earrings that she made for me as well. More about Jacqueline: Rebel Fashion

@ Jeanne Sather 2009.