The Assertive Cancer Patient

A Melanoma Diagnosis

I woke up this morning to find an e-mail from a young woman (35) who was just diagnosed yesterday with melanoma. She had found my blog, and was writing to ask for advice.

She's the mother of four young children, and was feeling very afraid and freaked out. "I'm driving myself crazy and it's day one," she wrote. "I'm looking for some advice about how to handle the stress and worry."

Well, I don't usually like to give advice, but I couldn't ignore this one. Here's my answer.

I'm laughing, but very gently, so don't be offended. This is how I felt when I was first diagnosed--with breast cancer and then later with melanoma. Of course you're afraid. Of course you are checking every single mole! I still do that, even though my doctor also checks them every few months--but I found the first one, so I figure that I am most likely to find any more.

I have lots of moles too, and freckles, so there's a lot to keep me busy.

So, this is what I think--

This stage of cancer treatment is the worst, trust me on that. When you first find out, and you're afraid, and you are worrying about your kids, and you haven't had treatment yet.

I think the best way to deal with it is to acknowledge it. Admit that you are scared stiff. Talk about it, if that's what you want to do, or ignore it publicly, but admit to yourself that you are scared.

If it helps you to get information, I would do that, but there is lots of scary info on the Web, and a fair amount that's not accurate, so be careful.

Then, I think, you have to be gentle with yourself until you've had the excision, and don't expect too much of yourself--because this level of background stress and fear can make you really tired and unable to cope with daily life. But you won't realize that until you have a meltdown in public (done that too), so be gentle with yourself.

If the stress and anxiety don't level off once you've had the cancer removed, I would consider seeing a therapist of some kind who can help you with these issues. I've had a therapist hypnotize me and make me a tape so I could do self-hypnosis on a daily basis when I was really stressed, and I take small doses of anxiety and depression meds--they help keep me on an even keel. And I see a therapist once a week.

You can find someone who specializes in working with cancer patients--they often can be really helpful. And don't feel embarrassed about this either--lots of times people are hard on themselves when they need this kind of help, I know I was in the beginning.

I hope this helps. Please let me know how things go, and if you feel like leaving comments on my blog, I have some great folks who read the blog--many of them have cancer blogs of their own--and you'll get some great support there too.

So, readers, please chime in if you have suggestions about living with fear.

Oh, and here's something I forgot, the link to a story I wrote several years ago:

Running With Fear

@ Jeanne Sather 2008.

A Quiet Blogging Day

After all the energy and emotion of writing and posting about "meltdowns" over the past two days, I needed to just sit back, regroup, and breathe.

My own meltdown is safely over for now, as is the bronchitis, although I will be interviewing a new oncologist in a couple of weeks, which is bound to be stressful, and I'm preparing for mediation/arbitration with my younger son's dad in early June, which will also be stressful. (Note the careful understatement here.)

Also squeezing in a trip to Tucson in mid-May to see the world's greatest oncologist, who was my doctor for more than eight years until he decided to head for the sun. I don't begrudge him that, he worked incredibly hard for decades, and now I get to go and see him in Tucson a couple of times a year.

I discovered that I love the desert. Cacti. Wonderful clean air. Creepy crawly things.

I'm going to buy a sun-proof shirt before I go to protect against any further sun damage that could bring up another melanoma. And sunscreen, of course.

Today, my two volunteer worlds collided when I took little Percival, the foster kitten, with me to First Place when I went in to teach Japanese. It was wonderful. The kids, most of whom live in shelters and can't have pets, were excited, but also very gentle with this tiny animal.

They all wanted to hold him, and I taught them the Japanese words for cat (neko) and kitten (koneko). So that was fun.

After all the excitement, Percival, now about 10 days old, is sound asleep in his crate in the bathroom, and I think I'm headed for an afternoon nap as well.

@ Jeanne Sather 2007.

Cancer Bloggers Join Forces

Last week, I had what I thought was a brilliant idea: What if all my favorite cancer bloggers and I joined forces and blogged on the same topic at the same time?

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

The topic I suggested was "meltdowns," because I'd been in the middle of a doozy of a meltdown for almost a week at the time, and for the first time I was blogging about a meltdown in real time. And the sky didn’t fall when I told the world I was having a hard time emotionally. A revelation.

Enthusiastic Response
Teresa at The Cheeky Librarian wrote back:
…your timing is perfect. I am building up for another round of exams on my head/body to see if any cancer can be seen (they didn't believe it was there the first time, dang it, so what is the point?), the first-born looks to be flunking his second senior year of high school (and doesn't seem concerned), a mother-in-law visit is only a week away and I am still not supposed to bend over (how else can I get ready for the inspection since no one else seems to know the floors and lower cabinets need cleaning? dripping stuff so the dog licks it up doesn't count!), and I am traveling soon to a city known for its wonderful cheese steak sandwiches yet I will never know a sandwich again - so I am prime for some dark days.

Folks at work seem to follow the Cheerful Oncologist's train of thought--in their words, I just shouldn't let things get me down. One even said that the cancer grew because I let things get at me, and I should only be positive. Blogging about ways a person is expected to apply that advice in daily life, and my predictions on what outcomes could be expected could be a good exercise, I suppose.

And Jacqueline, at Rebel1in8:
I think this is a mighty fine idea! … Next week's "meltdown" is great as I have one more post regarding the tail-end of a visit to bottom-of-the-pitsville USA. A few weeks ago my friend Tina over at www.diynotdie.com was writing about her lymphedema and after someone praised her for her positive attitude I commented:
"Just to keep it real: I love it when you're pissy, too. I’m proud of anyone who has the balls to be angry and negative sometimes—yes even when they have cancer! It’s human, part of empowering someone with cancer is allowing them the right to bitch without the fear that they are sending out a message of defeat and whining. so in short. I’m damn proud of you ALL of the time."

And then Laurie at http://notjustaboutcancer.blogspot.com/ posted http://notjustaboutcancer.blogspot.com/2007/03/raging.html.

Tina and I were talking last week and we agreed that recently we noticed a stream of similar blog posts. Bloggers, including Jeanne, were giving themselves the right to explore moments of clarity in an effort to let down the shield (as Jeanne calls it)—a small break in the uphill climb towards "positive" that doesn't have to disturb HOPE at all. I truly believe that it is not the feelings defined as "negative" that will ultimately harm us but the GUILT that is imposed upon us for not being Polly-Anna-positive 24/7 will be the magic mystery poison.

And Liz, at As the Tumor Turns:
Wow, this is funny, I was just today thinking I really need to go have my next meltdown with Jeanne. How cool would it be to be reading Elizabeth George in her back seat, with the top down and hanging out with the dogs! My own meltdowns are so pedestrian and run of the mill in comparison.

But yeah, good idea. I'm ready to blog all over the whole meltdown meme. I'm the official Not A Trouper poster child of the decade, Little Miss Meltdown, the Bad Attitude Queen. And I don't mind telling the world all about it in way too much detail.

Go to Liz’s blog for a hilarious report on a crawfish boil: “Or crawfish ‘bawl’ as they say around here.” Bonus: lots of photos of her new hair, which had a mind of its own, to say the least.

I’ll be linking to posts from these women and more. Here's the first one, from Liz at As The Tumor Turns, called Little Miss Meltdown.

Liz writes, "Sometimes a meltdown is the only sane response to a situation, and maybe just maybe, awful as it is, it deserves a little respect."

And here's another one, from Teresa, The Cheeky Librarian:
Meltdown - can information get me out of one?

Teresa writes, "If you are someone that doesn't have cancer and want to criticize meltdowns as a weakness, get your own cancer first and then come back to talk with me about it."

And Lynne at Life Changing Cancer weighed in on Tuesday morning with The Meltdown that Didn't Happen.

Here's one from Jacqueline, at Rebel1in8:
impinged diligence

@ Jeanne Sather 2007.

Meltdowns I Have Known

Meltdowns are humiliating, especially if they happen in public, as they so often do.

One of my more spectacular meltdowns occurred during a parent-teacher conference at Younger Son’s school. He was in third grade, so this was eight years ago.

It was the Monday after my second chemo treatment ever, back in the winter of 1998. I worked from 9 a.m. to 1 p.m., ran a couple of errands, then went to my son's school for a 2:30 p.m. parent-teacher conference. The family in the time slot ahead of us arrived late, and then took 50 minutes for their 20-minute conference.

And I fell apart. I started crying, and complaining to the teacher that I was just too tired for this and it was really unfair to make us wait so long. It was so humiliating. But I couldn’t help it. Classic meltdown.

The causes, of course, are pretty clear. I was too tired. I was fatigued from chemo. I had already done too much that day. I should have left, rather than wait for more than an hour, but when I suggested leaving, Robin started to cry. So I stayed. And then I cried.

I’ve had a few smaller, garden-variety meltdowns more recently, in the grocery store. I was there, despite being tired (read: exhausted, chemo-tired) because Younger Son (he’s getting all the bad press here, but he was not responsible for my meltdowns, just a bystander) insisted that there was NO FOOD IN THE HOUSE, and I, even though I knew I was too tired, went to the grocery store with him.

There is something about grocery stores when you are exhausted—the lights are too bright, there is too much stimulation (all those products shouting “buy me!”), too many choices (blueberry bagels, or plain?), other people are frazzled and in the low-blood-sugar zone, making them push and shove to get to the green peas or the soda.

So there I was, pushing a full cart while my son ambled along doing nothing, and I just lost it. Just like that. I said to him—in the produce section—“Either you help, or I am walking out of the store and leaving you here.”

He did, and we got the food and made it home, where I retreated to my bed to collapse.

The lesson: I knew I was too tired to go out again that day. But I was being a mom, and pushed myself past the point of no return. Now, when I’m tired and Younger Son demands food, I hand him a twenty and point him toward the store.

I also had a smallish meltdown on the day my dermatologist called to tell me the mole he had removed from my arm was melanoma. Actually, this meltdown started as soon as I got his phone message, “Ms. Sather, I need to talk to you about your test results.” When the test results are fine, they ALWAYS tell you so in the voice mail.

So I was already a wreck before I even dialed his number to call him back. But of course, doctors can never come to the phone when you call them, so then I had to wait for a return call. And waiting for bad news is so hard. It never gets any easier, and I’ve had a lot of bad news over the past eight-plus years.

I immediately put in calls to two of my closest friends. One talked with me on the phone, and the other came over to walk the dogs with me. That was enough to take the edge off of it, but I was spacey and weird for a couple more days. Shocked. Reeling from the simple fact that I had a second cancer.

Read more:

A Truly Big Meltdown

The Final Chapter

Things That Help

@ Jeanne Sather 2007.

A Truly Big Meltdown

This past week, I had a huge meltdown, which I’ve already blogged about in The Meltdown Report, except for the final chapter.

This meltdown was caused by a nurse (who I didn't even know) dumping her own personal shit about melanoma on me, when I was in for treatment. Unprofessional, you bet. But it took me days to get over it.

This was a five-friend meltdown, as opposed to the melanoma meltdown, which was a two-friend meltdown. What I mean is, I had to talk (i.e, rant, rage, cry, and, occasionally, talk) to five friends and my therapist before I got through it.

This was also a meltdown which required lots of personal caretaking, but I’m getting good at that:

On Day 4 of the meltdown, I came home after a trip to my doctor’s clinic for antibiotics and whiled away the rest of a truly gorgeous afternoon cuddled in the backseat of my Corvair (1964, red, convertible) in the backyard with the top down to enjoy the sun and the doors open to enjoy the company of my dogs.

For my comfort, I equipped myself with two pillows, a book (Elizabeth George), a bottle of vitamin water, and a pint of tapioca pudding.

Meltdowns are exhausting. Once all the negative energy is dissipated, you need to collapse. And not talk any more.

@ Jeanne Sather 2007.

The Final Chapter

The final chapter of last week’s meltdown is a tough one to write: My doctor fired me.

To be specific, she sent me an e-mail saying that I knew when I chose her as my new doctor six months ago that she only worked part-time, and if that wasn’t going to work for me, she suggested I find another doctor.

Well, I plan to do that. Immediately. No question. The problems I’ve had in the treatment room at that cancer center were enough to send me scrambling for an alternative, but then to have my doctor not get it …

So, what was this all about?

On Monday, I was short of breath from my anemia, plus I had what I thought was bronchitis—but could have been pneumonia, I’m not a doctor—and I couldn’t breathe. And my chest hurt.

When I picked said oncologist, who only works Wednesday-Friday, I interviewed her with a short list of crucial questions. One of these was, What do I do if I need to talk to you on a day when you are not in the clinic? And she said, “Call my office and ask to have me paged.” Great, I thought. And I wrote that down.

So that’s what I did on Monday, because I wasn’t sure if I should be heading to the emergency room or what.

I called at 10:30 and asked to have her paged. The person I talked to said very little, just took my name and number.

I called again at 11:30, and asked if they had been able to reach her. I was told they hadn’t paged her yet. I asked if they would please do so. I told the person I talked to what was wrong (the first person I talked to hadn’t asked).

I called again an hour later. I was told, only then, that they were NOT going to page my doctor, but that the nurse would call me back, “when she has time.”

I was calm up to this point, but by the time I finally did talk to the nurse, at 1:30, I was in full meltdown mode. No question.

I explained that I was only doing what the doctor had told me to do, and that no one had told me that that was not OK with the staff in the clinic. And no one had told me, the first two times I called, that they were not going to page the doctor. .. So what was up with that?

She just wanted to cut to the chase and talk about what was wrong with me.

So I pulled it together, put on my sunglasses, and went in for my chest X-ray and to get some antibiotics, and I didn’t discuss it again when I was there. I also didn’t tell my doctor about it via e-mail, figuring I would leave it for a time when the meltdown was safely over and I was talking to her face-to-face, but clearly her staff had given her an earful.

And she sent me the e-mail suggesting I find another doctor.

So here’s a question: I’m not the first cancer patient ever to have a meltdown. But no one I talked to, including my (now former) doctor or her nurse, seemed to recognize that or show any understanding, or any compassion for the fact that I was sick and scared. Why is that?

I’m disappointed.

@ Jeanne Sather 2007.

Things That Help

The only sure cure for a meltdown is time, in my opinion, but here are some things that help make it bearable.

Screaming

Breaking Plates

Retreating From the World

Blogging

Friends Who Understand
(and who DON’T try to cheer you up before you are ready)

Pudding

Escapist Literature
The piles of read-and-discarded books around my bed are growing to serious heights. I need to call the second-hand bookstore and sell a few hundred of these. If not, I soon won’t be able to make it to the bathroom in the middle of the night.

The Company of Animals

@ Jeanne Sather 2007.

A Steal From Fat Doctor

From the Fat Doctor blog:

"Studies show ranting releases harmful toxins. Really."

Warning to friends and family: Stay out of my airspace. I'm off-gassing.

Check her blog for the accompanying photo of a woman (with a full head of hair) ranting in spectacular fashion: Fat Doctor

The Meltdown Report

Well, my meltdown is now entering its fifth day, with a faint hope of clearing on the distant horizon.

It would help if I could breathe, but the combination of shortness of breath caused by my anemia PLUS bronchitis has me gasping for air. The pits. Can't even walk my dog.

Went to my doctor's clinic yesterday, although she wasn't there, and had a chest X-ray (to check for barely imaginable horrors, like a tumor in my lung) and then got a prescription for antibiotics.

Started those right away when I got home, and then whiled away the rest of a truly gorgeous afternoon cuddled in the backseat of my Corvair (1964, red, convertible. Yes, I know.) in the backyard with the top down to enjoy the sun and the doors open to enjoy the company of my dogs.

For my comfort, I equipped myself with two pillows, a book (Elizabeth George), a bottle of vitamin water (the kind with electrolytes that promises to make me PERFORM. Ha), and a pint of tapioca pudding.

I ate ALL of the pudding, thank you very much, except for the bites the dogs got, and made serious inroads into the book, all the while throwing tennis balls for Constant with my feet. Connie, like so many Lab mixes, seriously loves tennis balls. More than he loves me, perhaps. I think he sees me as an arm to throw those tennis balls, and a source of food.

Connie kept bringing the balls and dropping them on the floor of the backseat.

I stayed outside till after 7, then left the backseat while I still could.

The Whys and Wherefores of Meltdowns
A good meltdown doesn't really need a REASON. Of course, if you have cancer, and a life, there are always good reasons for a meltdown. But although they can be set off by an event, as mine was, they can also come out of nowhere.

Mine was set off by unresolved problems with the treatment room at my cancer center. Plus, a nurse who didn't wash her hands while going back and forth between me and another patient.

Plus another nurse who made totally off-the-wall comments to me about melanoma. Such as, "I'd rather have breast cancer than melanoma." (I have both, does she think I had a CHOICE?) And also, "Have you had PETs and MRIs to check for ..." I was feeling OK about the status and prognosis of my melanoma until this unwanted conversation.

Add to this, the second cancer, melanoma, on top of my metastatic breast cancer. A son who no longer lives with me (See Stepmom), and pending legal wrangles with his father. Anemia (Hematocrit of 27 and falling, last time we checked). And then getting sick with a cold that turned into bronchitis.

I'd say I was ripe for a meltdown.

The irony here is that I was planning, and still am planning, to write a post on meltdowns for my friend Beth, recently diagnosed with breast cancer. (I wrote the Bald posts for Beth.) Instead of me providing insight into this new world of cancer, Beth has been supporting me through this meltdown via e-mail during the past couple of days.

Thanks, Beth.

Still to come: Meltdowns I Have Known

Medical Note: Yes, I am going to see one of my two therapists today. (I have a spare, like the royal family of Britain. The heir and the spare. I am NOT, however, planning to send my spare to Iraq, like poor Prince Harry.)

Second Medical Note: This column is not medical advice. Consult your own doctor, and I hope you have an empathetic one, like Dr. L, to see you through the tough times.

@ Jeanne Sather 2007.