The Assertive Cancer Patient

Better After Care: Another Opinion

When I was in Tucson for my checkup with Dr. Livingston, I asked him what he thought about providing better after care for cancer survivors and long-term cancer patients like me (I don't qualify as a survivor, because I'm in continuous treatment. Semantics, anyway).

I was thinking along the lines of a new specialty within the oncology field, training some oncologists just to diagnose and treat after effects. But Dr. Livingston has another, and I think better, idea.

He says that individual oncologists should only treat one type of cancer. That will allow them to gain greater expertise in that type of cancer, and then, Dr. L says, oncologists should continue to see their patients after treatment for any problems the patient may be having.

"We need more medical oncologists who specialize in one disease," he said. "Then an oncologist is more likely to recognize late complications of the disease." He should know: Dr. Livingston has been caring for people with breast cancer for at least 25 years, and I have yet to ask him a question he couldn't answer.

Sending us back to our primary care doctors, even with a check-list of possible problems to look for, doesn't solve the problem.

This is a campaign I can get behind: Greater specialization within oncology.

@ Jeanne Sather 2008.

More Photos From Tucson: Happy Girl in the Desert

Saturday morning before we left for home, Monica and I went out for brunch, and then headed out to Sabino Canyon. You couldn't call it a hike, exactly, because we only walked a mile or two--that's all we had time for before heading to the airport and the three plane flights it took us to get home.

I could rant a whole lot more about traveling by air these days, and at this time of year, but we had only one flight delayed (the final leg, natch), by an hour, so we didn't get back to Seattle until after 1 a.m. Like I said, I could rant, but I won't, because I am too happy.

And we shared space at the airport in Phoenix with a bunch of folks trying to get to Mexico City on US Airways who were told their flight was delayed and they wouldn't be arriving home until 4 a.m. And then the flight to Dallas that was canceled ... We did good, relatively speaking.

@ Jeanne Sather 2008.

More Photos From Tucson: Phallic Tucson

I don't think I have a particularly dirty mind, but what are you supposed to think when these things are standing just everywhere in the desert? Tall and proud.

@ Jeanne Sather 2008.

More Photos From Tucson: The Dress

Here I am in The Dress, before heading out for the evening.

Incurable cancer never looked so good!

@ Jeanne Sather 2008.

Party Shoes

These are my new party shoes, admiring themselves in the mirror.

Celebrate!

I'm still in Tucson, with my friend Monica (we fly home tomorrow).

We decided yesterday that we wanted to do something to celebrate the good news from Dr. Livingston, but neither one of us had brought anything to wear that would remotely work for what we had in mind--the First Friday event at the Tucson Museum of Art.

And neither of us is a big spender when it comes to clothes.

So after my appointment with Dr. L, we headed to Ross Dress for Less, where Monica found a killer dress for $6.99 and open-toed black shoes for $14.99.

I spent a little more: $17.99 for a pair of red shoes, $13.99 for a dress, and about $10 for the right underwear. Getting these fun clothes for so little money was at least half the fun of dressing up.

Once we'd dressed for the evening we headed to a little bar for a light meal and a glass of wine, then to the Art Museum for the event. We saw a little art, watched a woman dance with a flaming baton, had a drink, flirted a little bit with a couple of interesting men, and talked to the artist who carved the dragon ice sculpture in the photo.

Back to the hotel and in bed by midnight. The perfect evening.

Home tomorrow afternoon. I'm a little worried about the weather--we may be flying into a winter storm.

@ Jeanne Sather 2008.

Postcard From Tucson

So, I'm in Tucson, as many of you know, for one of my twice-yearly checkups with Dr. Livingston, who was my medical oncologist from the time I was first diagnosed back in 1998 until he moved to Arizona more than a year ago.

This is the third time I've come down to see Dr. Livingston, and every time I've felt it was so worth it. Just to see him, and to have him review everything that is going on with me and my treatment, and to tell me what he thinks.

There is a level of trust here that I do not have with any of my other doctors. (In the case of Dr. Lee, my new medical oncologist in Seattle, I think we'll get there, but it's still not the same, much as I like him.)

The News
Last time I saw Dr. L, last May, I was at the point of refusing any more treatment. Let's be honest: I was contemplating suicide. That's how strung out and upset I was--It was a combination of my being totally worn out from treatment, problems Younger Son was having, and frightening problems at the cancer center in Seattle (Swedish) where I was being treated at the time.

He, bless him, proposed a treatment break. That lasted six months, and since then I've had lots of treatment in a short time: two rounds of radiation, three weeks at a time, and I've started a new chemo regimen, which includes Tykerb.

As I've said in earlier posts, my tumor marker dropped like a rock in the last couple of months, putting me in the "no active disease" category, possibly in the "clinical remission" category (although Dr. L and I didn't discuss labels), and I DIDN'T BELIEVE IT.

So, basically, I came to Tucson to have Dr. L tell me to believe these test results. And now I do.

He did say something that I hadn't heard before, which is that the Tykerb, my new oral chemo drug, sensitized the cancer cells so that the radiation worked better than it would have if I had not been on Tykerb at the time. That was cool. Take that, cancer cells.

My mental mantra for cancer cells goes something like this: "Biff. Bang. Bop. Take that! Nuke them back to the future!" I used to do the new-age-y visualization stuff, talking gently to my body and my cells, but now my visualizations are at the level of a violent comic book. Where's my super hero?

I also, being me, had a long list of questions written out, and we went over these carefully, everything from whether or not I should go back on Avastin (no), to possible harm to my thyroid from the last round of radiation, to how often I should get zometa (the ONE DRUG that I am now getting by IV. For most of my history since metastasis hit six years ago, I've gotten three or four drugs every time I went in for treatment).

Zometa damages the kidneys, and I don't want my kidneys to fail--wouldn't that be an irony: To be killed by the cancer treatment rather than the disease. Of course, that happens. We all know it.

And then there's the dip in my chest where my right breast used to be. It's gotten deeper recently, and I didn't worry about it so much as wonder whether or not I SHOULD be worrying about it. I asked one of my doctors in Seattle, and he just kind of dismissed my question without answering it.

Dr. L says that it is atrophy of the tissues because I had radiation to the chest back in 1999, when I had a local recurrence.

Great. Question answered. No more need to wonder. Or worry.

We had a bit of mutual congratulation over the fact that my tumor marker (CEA) has never been this low. Never. Not in six years of treatment for metastatic disease. And I reminded him that he had been taking care of me for more than nine years now, which is also quite a milestone. Typically, women with metastatic breast cancer only live two to three years from the time of the metastases.

There are a growing number of us, though, who are living a lot longer than that, especially women whose mets are only in the bone.

We also talked about my low energy and agreed that once I had the results of the tests of my thyroid function I could go from there with Dr. Lee. But also I need to accept that I'm going to feel like crap for a few more weeks, or possibly a month, because of the radiation.

That is so hard for me. Unbelievably hard. I do not do "feeling like crap" well.

As I write this, I'm still in bed in the hotel in Tucson, haven't gone any further than the bathroom. Monica is here and she brought me coffee and water. It's noon, and I'm contemplating staying in bed all afternoon, because we want to go out tonight to an art thing, a First Friday gallery show at the art museum here.

What I'd really like to do is go for a short hike in the desert, but I don't have the energy. We're going to try that tomorrow morning.

The Horizon Opens Up, Again
So I'll go back to Seattle with a couple of things to check out with my oncologist at home, Dr. Lee, and with incredible peace of mind. The feeling that I have is that the horizon is opening out again.

I asked Dr. L this question: "Given the low tumor marker, and how well I am responding to the Tykerb, I feel like I probably have a year of feeling good ahead of me." And then I stopped and waited for him to answer my question posed as a statement, and he said, "YES."

So. Yes. That means, given the way I live my life, that I will focus on the things I want to do in the next year, because I have some assurance that I will be able to do them: A couple of short trips. The Cancer Bloggers Reunion. The trip to Japan in October.

Then, at home, it's almost time to start thinking about my vegetable garden for the coming summer. Time to start some seeds and know that I will be here to plant them outside, and to eat the fruits and vegetables as they ripen.

Tired as I am, I love my life, and I'm willing to fight for it, for at least a while longer.

Love you all.

A note: If you want to read more about Tykerb, go to the search box in the right column and enter "Tykerb." I've written at least a half dozen posts about this new targeted therapy.

@ Jeanne Sather 2008.

Name the Gizmo: What Is This?

Anybody have any idea what this gizmo is called?

I know how it's used: Patients who check in at the Arizona Cancer Center in Tucson are given one of these gadgets at the front desk. When it's time for you to move on over to the financial office, it beeps and tells you to go there.

When it's time to head back to your doctor's clinic, it beeps again, and gives you that message on the screen.

I like it. One reason is that this way no one is calling your name out in a huge lobby full of people. So it protects patients' privacy. And two, I like gadgets.

But what is it called? Or maybe we should just make up a name?

Any ideas?

The photo at right is a closeup of the screen on the gizmo.

@ Jeanne Sather 2007.

A Break From Treatment

Back home in Seattle after a five-day trip to Tucson to see my oncologist. Rain pouring down ever since I got home, and temperatures about 50 degrees below those in Tucson. (Shiver.) Also gas prices jumped about 50 cents a gallon while I was gone, putting them about that much above the prices in Tucson ($3/gallon in Tucson, $3.50/gallon in Seattle). What's that all about?

The good news is that my doctor said I could take a break from treatment--the first I've had since my cancer metastasized to my bones five and a half years ago.

So while sorting myself out from trip--unpacking, getting my animals back home, sorting through STACKS of junk mail, getting the garden back into shape, thinking about cleaning house (but not actually getting to it yet)--I've been thinking about what it means to not be in treatment.

• More time. I won't be spending four to five hours at the treatment center once every three weeks.

• More energy. Not immediately, but soon.

• Less stress, for the most part. Going in for treatment, even after all this time, is incredibly stressful for me. Now, I'll have some stress from the usual tests--tumor markers, MRIs, PETs--but that's all.

• Hair. My hair should start to grow again soon. Right now, my eyebrows and eyelashes are nearly invisible, and the hair on my head is wispy with scalp showing through. Downside: I'll have to start shaving legs and undersarms again.

• Appetite. I haven't had a healthy appetite for months, maybe a year.

• Fewer drugs. I've been taking something like seven prescription drugs a day. That number has dropped to three or four.

• Teeth. I can get my teeth cleaned and maybe have some dental work done that I'd been putting off because of the Avastin. Avastin interferes with blood supply to tumors, and also makes you slow to heal, so I couldn't have a tooth pulled or other work done while I was on it.

• Fingernails. My nails had pretty much stopped growing the past few months, and then split easily, sometimes right up the middle, which hurts.

• Tummy. I've had an upset tummy for something like two years here. I'm hoping the break from chemo will allow it to calm down.

But mainly, the benefits of this break are in my head. I was so tired of treatment and all the issues that surround it, that I was ready to give myself a break, with or without my doctor's approval.

Tomorrow, I'm interviewing a new oncologist in Seattle. Expecting that to go well--I'm calm now, after the trip to Tucson, and I know what I want. If this doctor isn't the right one, I'll keep looking.

Read: The Assertive Cancer Patient: Chooses the Right Doctor

@ Jeanne Sather 2007.

The Tacky Tour of Tucson

There are some things I love about Tucson: the hot weather (97 degrees today); the surrounding desert, especially the blooming cacti; my wonderful doctor, who relocated here almost a year ago to give me an excuse to visit a couple of times a year.

Sabino Canyon. The Center for Creative Photography’s gallery on the University of Arizona campus. Lizards. Cafe Poca Cosa.

Houses for sale in the $200,000 range. Rentals for $500-$800.

Good meals for $10. Four hours parking on the UA campus for $5. Free parking at the cancer center. (NO free parking at cancer centers in Seattle.)

Prices are reasonable everywhere except at our hotel, where a 50-cent bag of M&Ms (Monica) costs $1.65 in the gift shop, and Diet Coke (Jeanne) is $1.75 at the vending machine. Free parking for hotel guests, however.

And then, there is Tacky Tucson.

Tacky Tucson
There are apparently NO BOOKSTORES in Tucson, except the UA bookstores, which seem to sell only textbooks, and not very many of those, and college logo gear—mountains of that.

Granted, I come from Seattle, a town with more than its fair share of bookstores, at least five within walking distance of my house. Monica and I spent more than an hour yesterday driving around looking for a bookstore. The only one we found was closed.

Today, we discovered a Borders Books at a mall, with an SBC coffee shop where we parked ourselves and our laptops to write for an hour or two.

Except for downtown, Tucson appears to be a collection of tacky strip malls, with an occasional upscale mall thrown in for variety. The same chain stores repeat every mile or so on the main drags, giving that déjà-vu-all-over-again feeling.

This morning, just for fun, we counted the chain stores as we drove from our hotel to the mall bookstore. We started at the corner of Speedway and Stone, proceeding east on Speedway, south on Alvernon and then east on Broadway. Within 7.8 miles, we counted three Circle K gas and convenience stores, four 7-Elevens, two Jack in the Boxes, and three McDonald’s (these three within a total distance of 1.4 miles), as well as a Taco Bell, an Arby’s, a KFC, a Starbucks, and a Denny’s.

In among the chain stores are battered-looking small businesses that appear to be losing the retail battle to the chains, hands down. PayDay Loans. Nail salons. Glasses repair shops. Used furniture stores. Another factor probably killing the small mom-and-pop businesses is the air conditioning at the malls, especially now. Temperatures topped 100 degrees F for the first time this year on May 11, according to the Tucson Weekly.

Reading the Paper
I started reading the May 17-23 issue of the Tucson Weekly with the classifieds. I almost always read publications from back to front—often the best, or most honest, picture of a community comes from the classifieds.

I found:

• An Ad for the Phoenix Gun Show, May 19-20 at the Arizona State Fairgrounds. Glad we’re in Tucson.

• A HUGE help-wanted ad for telemarketers to sell printing supplies. The ad offers a $300 signing bonus and a possible income of $1,000+ per week.

• The tackiest ad—one of the tackiest I’ve ever seen anywhere, any time—was spotted by Monica, and we’ve been giggling over it ever since: an ad for “laser reduction labioplasty.” Don’t know what that is? Check it out: LVRI-Phoenix.com.

You know, these doctors could be repairing cleft lips and palates in the Third World. Instead, they are remodeling women’s genitalia with a “one-hour laser procedure."

Continuing to work toward the front, there’s a column that certainly brings Hispanic/Anglo tensions out in the open. It’s called “¡Ask a Mexican!”

I think the questions are made up, but I'm not entirely sure (I e-mailed the writer, Gustavo Arellano, to ask, and he replied, "Every question I get comes from a real-live person!" Amazing).

Here’s part of the first question in this week’s column:

“Dear Mexican: I have no problem with immigrants … What I can’t stand are a bunch of fence-hopping, river-wading illegals telling me I owe them a free education, free health care and free transportation, then making me speak Spanish at every restaurant, car wash and public school in the county. Making these people citizens simply because they’re here is like letting someone keep my car just because he already stole it.”

The next two letters complain about Mexicans “blasting [their] accordion music” (letter one) and “blasting that horrible, bass-pounding circus music” (letter two).

The answers are funny, logical, totally un-PC, and somewhat educational about Mexican culture. Hum. I like it.

Then, a display ad for a $65 “snakebite avoidance training” for dogs, offered by the Humane Society of Southern Arizona. Fascinating. Again, not an issue for dog owners in Seattle.

Moving into the news/opinion hole:

• A piece about a Child Protective Services employee who dated an abusive dad who was under her supervision.

• Another on why the bees are “eerily” missing from Southern Arizona this spring. I’m a gardener, so I read every word of this one.

• And a story on universal health insurance (a big issue of mine) that says that more than 1 million Arizona residents (nearly one-fifth of the state’s population) are uninsured. That’s twice the rate back home in Washington state, where about 600,000 people are uninsured, 10 percent of our population of 6.26 million (in 2005).

The cover story, “Tucson’s OTHER Collegiate Sports Program,” about Pima Community College athletics, didn’t interest me, because I’m neither a sports fan nor local.

I rather admire the Tucson Weekly, which is put out with an editorial staff of four and a half (I’d like to meet the half, kinda like the average American family with its 2.3 children), and a couple of dozen freelancers.

I used to write an occasional piece for Seattle Weekly, before the recent coup left all my favorite editors and writers out in the cold. (Actually, Skip Berger and Chuck Taylor seem to be happily settling in at Crosscut.)

Death By Rice Paste (I call this story: The Mochi Death Toll)

Running With Fear

Life Goes On

Tomorrow—back to Seattle.

A Footnote: After dinner at Cafe Poca Cosa (we had the delicious corn thing), Monica and I headed for the historic Hotel Congress, recently named one of the best bars in America by Esquire mag. However, the street was blocked off by yellow caution tape and cop cars, lights flashing. We asked a bystander what was going on and were told, "Someone got shot and run over."

We gave the Hotel Congress a miss.

@ Jeanne Sather 2007.