The Assertive Cancer Patient

Date Night!

I meant to write this post on Monday morning, to give all of you who are curious about my love life an update on my date with Car Guy.

But life had other plans for me, and instead I spent Monday morning making an emergency trip to the vet with Younger Son's dog, GB, who had swallowed two huge rocks. The dog is still at the vet, and I'm waiting for a phone call with the daily update on his condition.

Between the doggy medical emergency and my own doctor's visit for a melanoma checkup (Oh, this is melanoma awareness month--someone please give me the correct name. Carver? And what color ribbon is assigned to melanoma?), plus everything else that is going on--kittens, story deadlines, life in general--it seems like a long time since Sunday night, and I'm not sure I have much to say ...

Before my date with Car Guy, I was worrying about two things:

1. Having "The Talk"--telling him about my cancer. Plenty of men have turned and walked away at that point, so I was dreading telling him.

2. This one is funnier: Trying to decide if I should wear Jabba, my breast prosthesis, on our date. You have to understand that my remaining breast is a D cup, so no matter how I dress, it's fairly obvious that one breast is missing.

But I haven't worn Jabba since Labor Day weekend when I visited Jacqueline in New York and bought the first of several pieces of clothing from her line, Rhea Belle.

I went back and forth on the Jabba question for hours. Finally decided to wear Jabba and popped him into my new underwire bra.

After fussing around for a half hour or so, I realized that there was no way I could go backwards on this issue. Jabba was really uncomfortable. Also, I felt I wasn't being true to myself by wearing Jabba for a date when I had abandoned him in every other area of my life.

So, no Jabba.

Car Guy and I went to Seattle Center and rode the bumper cars--great for getting rid of negative emotions--and then the ferris wheel. Then we had some dinner, and over dinner I told him about my cancer.

His first reaction was shock, because he honestly had no idea (and I guess had not noticed my very lopsided chest). Then he asked some questions, rather carefully, feeling his way. That was fine.

When I asked him directly, he said it didn't make any difference to him. But from my side I think I will have to wait and see. We haven't made plans to go out again, but he still has my Corvair, so I will be seeing him again if for no other reason than to talk to him about the car. (And get it back, sometime very soon, I hope.)

He is a great guy, very supportive of his friends, a good father (from what I've seen of him with is 10-year-old son), and a perfectionist when it comes to his work. What's not to like?

So, stay tuned for updates.

Read more:

Retiring Jabba

From Debutaunt:

The Dating Game

@ Jeanne Sather 2008.

A Report: The Wisdom of Patients

Teri, The Cheeky Librarian, sent me a link to a new report from the California HealthCare Foundation: The Wisdom of Patients: Health Care Meets Online Social Media.

Basically, the report confirms what those of us who have cancer and use the Web heavily--for blogging, online support groups, bulletin boards, listservs, and all the rest, already know: The Web, and the people we meet there, is a huge help to people managing chronic illnesses, like cancer.

Here's part of what it says:

Social media on the Internet are empowering, engaging, and educating health care consumers and providers. While consumers use social media -- including social networks, personal blogging, wikis, video-sharing, and other formats -- for emotional support, they also heavily rely on them to manage health conditions. ...

Using examples, this report describes how the Web is becoming a platform for convening people with shared concerns and creating health information that is more relevant to consumers. Social networks, ranging from MySpace to specific disease-oriented sites, are proliferating so rapidly that new services are already under development to help health consumers navigate through the networks.

The report details how innovative collaborations online are changing the way patients, providers, and researchers learn about therapeutic regimens and disease management. It examines the benefits and concerns regarding Health 2.0 and it also includes an extensive listing of health media resources.

To read more, or to download the full report:

The Wisdom of Patients: Health Care Meets Online Social Media

Over the past few days, I've been e-mailing back and forth with a man whose father-in-law has stage IV melanoma. I introduced him to Carver, who had stage III melanoma, and I've also been helping him to understand clinical trials and what the different phases mean.

He found my blog, and me, by doing a Web search.

@ Jeanne Sather 2008.

A Day on the Couch

I'm not used to staying up late, but with a houseguest here (and one who is one of my oldest friends, who I don't see often enough) I've been staying up late, going out to eat, and even drinking beer, which I very rarely do.

So today I had a small crash and canceled my appointments for the day and just stayed on the couch, napping, except for checking e-mail and taking care of all the animals.

The kittens are thriving. Just about old enough to try them with a dish, which will make my life with kittens easier--bottle-feeding four kittens takes almost half an hour. And they need to be fed about every three hours.

Intermission
Short break there while I went out with a friend of a friend to rescue my Corvair from the mechanic who thinks charging me $800 for something is "nickle and diming" me. So I (over)paid almost $2,000 for the repairs to date, and said no to the $800 repair that he was proposing on top of that, and my friend, who is a mechanic, is going to see if he can sort out the problem for me.

I took him to dinner to say thank you for his help with the car, and that was really fun. It's not often I meet an attractive, single guy these days. And he has a 10-year-old son, which I consider a bonus. I miss the kid years, much as I love the young men my sons have become.

A Disappointment
I received an e-mail from ASCO this afternoon, saying they were not going to give me a grant to go to the annual meeting in Chicago as a "patient advocate." That's a bummer.

I e-mailed her back asking her what kind of patient advocates they DID give money to, because I'm curious. I haven't received a reply yet, but when I do I'll post it. I thought I wrote a pretty good application, and I have a very long list of things that I've done in support of cancer patients, so, quite honestly, I thought I was a shoe-in for the grant.

But I'm still planning to go. Just have to find (under a rock, maybe) the $1,500 that it will probably cost for airfare, hotel, meals, and the registration fee for the meeting.

@ Jeanne Sather 2008.

One of Amorette's Babies Has Died

My dear friend and fellow cancer blogger (and bento artist) Amorette was about 18 weeks into her pregnancy with twin girls when she lost one of the babies.

Little Cécile was born on Sunday, April 13, after a premature delivery, Amorette writes on her blog. "She was too tiny to breathe on her own and died shortly after the cord was cut."

The funeral is today, and sadly Amorette cannot be there, because she is still in the hospital, fighting to save Cécile's identical twin sister, Madeleine. Her mother Pam is with her.

Please go to Amorette's blog to leave her a message, and keep that number 24 in mind--that's how many weeks old the baby needs to be to survive.

Go to Amorette's blog: Cécile

@ Jeanne Sather 2008.

... Feed a Cold

I woke up this morning feeling crummy, and decided I'd better cancel my volunteer gig at First Place School.

Then, as I was giving Constant, the Wonder Dog, his shower (needed since he came home from the dog ranch a week ago), I kept feeling dizzy and had to sit down a couple of times.

Now, the thing about feeling like this when you have cancer is that it's hard to tell if the problem is:

A. The cancer

B. The drugs

or:

C. Some garden-variety thing that everyone is getting.

So I waited a few hours, had coffee with a friend here instead of going out for it as we had planned, and worked on my blog for a bit. Then, sure enough, I started noticing cold symptoms. So now I can relax.

If you have cancer, you know what I'm talking about.

Now we come to the "feed a cold" part. This is what I'm eating for lunch.

It's just a package of Top Ramen (five for $1 at the QFC), dressed up with some cubes of tofu, an egg (poached in the broth), and a couple of spoonsful of miso, one red and one white. (Both kinds of miso are actually shades of brown, but in Japanese, they are red and white.)

For some reason, when I have a cold I tend to crave protein. That seems odd, but I go with my food cravings--except for the craving for a quart of green tea ice cream. I'm going to ignore that one.

The bowl is my special noodle bowl with red dragonflies painted on the side. It makes food taste better.

@ Jeanne Sather 2008.

Life on Fast-Forward

Cancer makes you think about all sorts of things, including your own life (and how much more life you are going to have, and how best to live it, but that's another post for another day).

When I look back at my life, I've pretty much always lived it on fast-forward, once I left home. (My parents' lives were 78s played at 33 1/3, if that makes sense in this age of DVDs.)

I went to Japan for a year while I was in college. I had my first master's degree by age 26 and my second by 29. I got married in there somewhere, and then went to Tokyo to work the minute I was done with that second master's (which I finished in a year and a half--a two-year program, normally).

We adopted Older Son the first year we were there, and I lived a crazy life trying to be a journalist and a good mother, both. The marriage suffered, needless to say.

Divorce. Return to the States. Romance that produced Younger Son. Life as a single parent, working full-time (the toughest years ever).

Then cancer.

The toughest thing for me about life with cancer is my lack of energy. I know those of you who read my blog regularly probably think I have LOTS of energy, but the truth is, I don't.

I prioritize. I give up when I'm tired. And I only have about eight hours of good energy a day (which I'm grateful for, there were times it was only four or six hours).

And this is endlessly frustrating to me. I know how to cope, and I manage, and priorize, like I said. But I want more energy and more time on a daily basis.

It's the toughest thing about being me.

What's the toughest thing about being YOU? Add a comment, below.

@ Jeanne Sather 2008.

Story on MedTrackAlert: How to Talk to People With Cancer

A editor with MedTrackAlert found me through my blog and asked me to do some writing for them.

This is the first piece that's been published. It first went out in an e-mail newsletter and then was posted to the Web site.

Those of you who know me will recognize that what to say--and what not to say--when someone you know has cancer is a topic close to my heart. No writer's block with this piece!

How to talk to people with cancer

MedTrackAlert
From their Web site:
MedTrackAlert is a consumer health information company dedicated to helping people better understand the benefits and risks of prescription medications.

We provide our members with important, time-sensitive news to keep them aware of new advances, adverse drug interactions, and potential dangers related to the medications they take. Our goal is to help you begin and maintain a fruitful collaboration with your doctors in the management of your health.

How It Works
We deliver news through our Web site and e-mail newsletters. Registration for our service is completely free and provides access to our full archive, health management and assessment tools, and free samples from drug manufacturers.

@ Jeanne Sather 2008.

What Embarrasses You?

This post grew out of an e-mail conversation with Dee, another cancer blogger. She's the one collecting all the boob jokes, so if you have any for her, send them her way.

She's an anthropologist, so she has an academic interest in boob jokes, not a dirty mind. (Uh, huh.)

Anyway, not to reveal the private details of what we were talking about, but it got me thinking about how tough it was to be a teenager, and how many embarrassing moments there were in those days, while now I'm not often embarrassed, and certainly not by who I am.

I think feeling like you don't belong, for whatever reason (too smart, too tall, too short, wrong color of skin), especially when you are a teenager, is embarrassing in a way we adults can barely remember. Very little embarrasses me now, but when I was a kid--oh, boy.

I had the smart thing going (I was a geek before we had a word for it) in high school, and since I was in a working class town I only had a few friends. I feel pushed out of the mainstream--once I showed up at a party in high school (with a recognized "bad boy" too) and the party literally STOPPED. Everyone was so shocked that I was there!

One of my good friends was growing up gay, although we didn't clearly realize it at the time--so you can imagine how tough that was.

And my two days without working plumbing reminded me of going to my aunt's farm in the summers. They had a well, and sometimes worried about running short of water. So I was instructed to only flush the toilet after I had gone "number 2."

I found it incredibly embarrassing to think of someone else seeing my urine in the toilet, so I flushed anyway, and got in trouble.

Having had so much cancer treatment, there is very little about my body that embarrasses me. Also, of course, growing older contributes to this lack of embarrassment.

About the only thing I can think of that would embarrass me now would be if I hurt someone's feelings. That leaves me totally red-faced and smacking myself up alongside the head.

What embarrasses you?

@ Jeanne Sather 2008.

Double Oh Shit!

So Handy Guy turned off the water yesterday without telling me (to be fair, I was in my room, taking a nap) and then had to leave it off overnight.

He showed up at 5:30 this morning to try to fix the shower, but instead got a shower of water in the face when he turned the water back on (Some of the welds were not holding). So he threw in the towel, so to speak, and called a plumber.

Right now, at a few minutes before noon, I have TWO expensive plumbers in my bathroom, trying to put this botched home repair right, and to top it off I have no water, no coffee (because of the no-water situation), and haven't had a shower for two days.

I also feel like shit--really, really tired, which I suspect is from coming down after the trip.

I just remembered the three quarts of water in my disaster preparedness kit--need to get those out, give water to the dogs, and make myself some coffee. Then I think I might go back to bed till I feel better.

Don't really want to be in bed with plumbers in the house, though, so maybe I'll just hang out on the couch till they finish.

I'm not mad at Handy Guy over this. He was trying to save me some money (oh, boy, be careful of taking shortcuts on home repairs, that's the lesson for the day), and originally we were just going to replace the fixtures--no pipes involved. I made a bad decision in telling him to go ahead while I was on the trip--I should have waited till I was home to give the whole problem more thought. After all, there is a second shower in the house ... can't use it now, of course, because the water to the whole dang house is turned off.

Good training for The Big One, I guess.

Coffee!

P.S. The birds seem fine, despite yesterday's welding fumes.

Read: Cancer Patient Disaster Preparedness

@ Jeanne Sather 2008.

Oh, Shit!

So, Handy Guy was over today. He's still working on replacing my bathroom shower fixture. The whole thing has become quite a drama, because the original fixture was bought by previous owners in Europe (they were from Finland, according to the next-door neighbors, who were quite friendly with them) and cannot be replaced.

The original fixture does not meet present codes, that's one reason it can't be replaced, and also because the guy at the plumbing store had never seen anything like it. Oh, dear. He suggested replacing the entire shower stall, which is NOT going to happen.

Anyway, we bought something that we thought could work, before I left on my trip, and I left Handy Guy with a house key and he's been coming over after work and just taking it a step at a time. Today, he needed to soldier the joints, and of course he had to turn the water off for that.

But then I got the good news: I can't turn the water back on until he comes over tomorrow morning to check things out. Can't do it tonight because it has to cool.

So here I am with bed-head, not having showered today.

I can live with that. The "Oh Shit!" part is that I just remembered that he was soldiering in the bathroom, which is where the birds live, and birds are sensitive to fumes. Shit!

I ran in there and checked them, and they seem OK. I've turned on the bathroom fan and opened the door to give them fresh air. Dumb, dumb, dumb.

@ Jeanne Sather 2008.