The Assertive Cancer Patient

Finally, I Fixed My Search Box

It only took me a year (or more) to get this fixed, but now the little search box at the bottom of the right column on my blog actually WORKS.

So search away, my friends.

For an explanation of how this happened, see: I Know, I Know ...

Cancer Blogs: Add Your Favorites

I often find myself attracted to a new (to me) cancer blog by the title. And there are some great titles out there. (I'm not ignoring the content, but it's a great name that makes me want to read the blog.)

For example:

The Daily Breast 

The Cancer Show

Pink Ribbon Blues

a little c

Great titles, all. Please feel free to add to the list by leaving a comment below.

These two blog titles are in my cancer blog title Hall of Fame:

The Cheeky Librarian (You have to know Teri's story to get why this one is so clever.)

But Doctor ... I Hate Pink

 

@ Jeanne Sather 2012

Wifi at The Manor

I now have access to The Manor's wifi, so I can get online from my little studio apartment. 

This means I don't have to shower and get dressed and go out (coffee shop or Younger Son's apartment) in order to get online.

Now, I need to get out of my moderate funk and start writing again. This has proved amazing difficult. I'm open to suggestions--do you have a topic that you'd like me to blog about, or something you'd like me to throw out to my readers to get their reactions?

Until I get a good head of steam up, here are some of my past rants, and some from readers. (My favorite type of post, by the way.) See: Rants

I did put up a short post on the Komen/Planned Parenthood flap, but I have to say it didn't surprise me. I've known for years that the Komen insiders are a bunch of rich, politically conservative Texans. 

@ Jeanne Sather 2012

How's Life at the Manor?

Quite a few friends and readers have been e-mailing me or posting comments asking how things are in my new place, an assisted living building on Seattle's Capitol Hill.

One reader asked which was worse, not having a real kitchen or not having a separate bedroom. Neither of these has been as issue for me so far, except that I have to make my bed every morning. 

Cooking has been a struggle for me for months, if not a year, so I'm OK with not needing to shop for all my meals and then cook them. I make myself coffee in my new French press (a housewarming gift) before I get out of my jammies. The fridge has half & half for my coffee and some good Greek yoghurt from Trader Joe's, which is only two blocks away. 

Breakfast is served in the dining room from 7:30 to 8:30, but I usually don't make it. That's just too early for me. I like to putter and drink coffee before I shower and dress. Maybe I'll change my schedule gradually ... maybe.

One really nice thing: My room is cleaned once a week, on Saturday mornings, in fact, and this includes washing my bed linens and towels and then remaking my bed. Since I find it difficult to get the bed back together, this is a big advantage. My housecleaner told me I should get a laundry marker to put my room number on my sheets and towels so they don't get lost ... one more thing to do.

I've been keeping notes on my new life and I'll write a more detailed post soon. The days are too long, and I'm working on that problem. I'm at Younger Son's apartment this afternoon and then we are going out for an early dinner before he walks me home.

Tomorrow, Sunday, I'm going to a movie with a friend. She just started doing "mystery shopping," and seeing the movie is a job for her. I don't know much more than that yet; I'll try to write about it next week.  

Wifi

The manager at Fred Lind told me that he is working on getting Wifi access for residents who want it, so I'm waiting on that rather then setting up my own system ($$$$). Until that happens, expect me to update my blog about twice a week. I need to find a coffee shop with Wifi that isn't too far for me to walk to while carrying my laptop. 

The biggest thing I've realized is that I need a purpose in this new life. This blog has been that purpose (or one of several) since I began it back in 2006, and I've decided that I want to continue. 

Of course, I also have to get stronger--working on that--and get through the fecal transplant (my No. One medical issue right now). But it will happen.

 

@ Jeanne Sather 2012. 

Snow Daze

Those of you who live in the Seattle area (or in the state, for that matter) don't need me to tell you about the snow and ice storms of the past week, and I understand we made the national news as well.

The snow disrupted some of my plans for last week, but not too many, and The Ranch (my skilled nursing facility) had power and heat. Short staffed, some days, and my favorite nurse ended up working two shifts back to back in order to cover for others who couldn't make it here. 

Physically, I'm still tired and weak, but definitely improving. The second bout of C. diff. is under control, but that's with me on vancomycin. I am worried about the long-term plan to keep it away, and I have an appt. with "my" infectious disease specialist on Monday the 30th. I'll stay on the vanco till then. 

Progress

Andrea ended up taking me over to Fred Lind Manor on Friday. We had a measuring tape and drew out the floor plan with measurements. I also had a list of the furniture that I want from the house.

It's a small studio (14' by 20', I believe). The "kitchen" is like a doll kitchen--a tiny sink, tiny fridge, and microwave. No counter space to speak of. 

Two closets, one quite large, and a reasonably sized bathroom with grab bars everywhere and an emergency cord. Only one window in the whole place. 

Yesterday, Saturday, Linda picked me up and took me to my house. This is always difficult for me, emotionally, but I needed to do it. I put post-a-notes with the word "take" on the pieces of furniture I want moved to Fred Lind, and we also boxed up sheets and towels, cleaning supplies and TP, and a couple of paper lamps to protect them during the move.

Tomorrow, Monday, a gang of six--Younger Son and five good friends--will be moving the furniture from the house and arranging it in my new home. The only thing that I'm worried about them having trouble with is my brass bed, which belonged to my great-grandmother, the Norwegian one. I've slept in that bed since I was 8 or 10, and I'm not ready to let it go. 

Plus, it has a new mattress.

While the move is going on, I will be at the Seattle Cancer Care Alliance to get scans required by the T-DM1 clinical trial. That will take three and a half to four hours, and yet another friend is driving me. 

Then back to The Ranch, where I have a "care conference" scheduled. I'm not asking YS or any friends to come to that with me, since we had one weeks ago before the return of the C. diff. I think I can handle it. At this meeting, the staff here evaluate my fitness to go to assisted living. 

Then, it takes them several days to do all the paperwork to spring me (don't ask--even I don't know why it takes so long). I'm hoping they release me on Friday ... we'll see.

The day before that, I have treatment at SCCA. With the blood draw, doctor's appt., and then treatment itself, that takes something like five hours. 

Oh, and then the following Monday, a week from tomorrow, I see the ID specialist in his office--which is all the way up in Edmonds--to talk about a plan to keep the C. diff. from coming back. I've had three bouts in four months. 

Cancer--it's not for sissies. 

Random notes:

I'm no longer wearing diapers.

The food here is beyond terrible, but at least I can eat small amounts.

I don't think Fred Lind has Wifi for residents, so there may be a gap in communication around the time of my move. I'm going to ask them to consider putting in a network ... there may well be other residents who want to get online. If not, I'm going to ask a techie friend to set one up for me.

Worried about the cost of that, but it's not the first thing on my list, so I've marked it to worry about later.

I have decided to continue with my blog. For awhile I thought I was done with it, but I don't think I am. I have a new life to make for myself, and the blog--and your support--will help me do that.

 

Jeanne Sather 2012.  

 

 

Talk to Me

I just reread the post that lived at the top of my blog all week, the one about Steve's exhibit of Grateful Dead photos.

And, on rereading it, I discovered that I never once gave the photographer's FULL NAME.

Now, I'm spacy these days, but really!  I mean, really!!!

Here it is: Steve Schneider=Steve Schneider=Steve Schneider=Steve Schneider=Steve Schneider=Steve Schneider=Steve Schneider=Steve Schneider=Steve Schneider

Steve was kind enough not to point this out to me. He even bought me a drink when a group of us went out afterwards. I had an Irish coffee (I was cold. It was tasty). 

During the reception, I discovered that photographers' brains work differently than writers' brains, or so I think. I kept trying to get Steve to TALK to me about his images. But that's not how it works. He didn't want to use words.

Any thoughts? Throw them out in the comments box below.

To be contrary, however, I hate it when bands play live on the radio and then answer a few banal questions about their music--I want them to shut up and play. 

Steve Schneider's exhibit of photos of the Grateful Dead--shot over a 20-year-period--continues until mid-January at the Jeffery Moose Gallery in the second floor lobby of the Rainier Tower on Fifth Avenue in downtown Seattle.

'Cancer Women'

A reader, Tammy, used the expression "cancer women" in a comment on my blog the other day. That's us. 

E-mail--This Is NOT a Democracy

E-mail can be overwhelming in its volume.  

I give very little attention to the lame, cliche'-laden press releases ... My loyal readers know that. They aren't worth my time and energy.

My best energy goes to The Newly Diagnosed. 

Mostly, these are people who have just found out they have cancer (but I sometimes talk to people with other serious diseases/illnesses).

More often than not, it is women who write to me, seeking my help. But not always. Right now I have several male readers/friends who are very dear to me. 

(I've run out of "M" words ...) Typically, it is the newly diagnosed person who writes to me directly, but sometimes it is a daughter, a friend, a son, a husband ... 

Why do the newly diagnosed get my best energy and my best attention? Because this is the hardest time.

See: Newly Diagnosed 

To bring this post full circle: The headline is "Talk to Me," and yet many of you are waiting to hear from me. You've e-mail me and I haven't gotten back to you. At the same time, however, I am asking you to talk to me, which really means "write to me" . . . 

 

@ Jeanne Sather 2011. 

More Baby Steps

I removed the password protection from my blog today.

We'll see how it goes. 

Thank you for all the birthday messages. 

Baby Steps

Today is my 57th birthday.

It's special, to me, because I never thought I would make it this far.

The hardest thing about living this long with cancer is that I have met and become friends with so many people through my blog ... and then they have died.

Today I'm thinking of Deb and Julie.

The best thing ....?

I don't think I want to say. I'm not sure that I know.

And I certainly don't want to claim "wise woman" status on the basis of having lived with cancer for so long. Plus, I've had some pretty humbling experiences lately--made some pretty big mistakes.

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The password is going to stay on for awhile, because I need my time and energy for myself. I am very bruised right now.

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Before I do much writing here I am going to work on jewelry, with the (paid) help of a college student or two to run to the post office for me and do the parts that slow me down.

I can't run it like a business, but I will put a note up here when I have new piece for sale. Also, my preference is to make only one of anything, except earrings, sometimes I enjoy making a few pairs the same. Or similar.

What I don't like to do is take an order to copy something I made a year or two ago. Duplicate my own work, I  mean. So please don't ask me to do that.

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No medical news for awhile. 

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Today's special sale: My Favorite Frog

I'm offering this turquoise bracelet with my favorite frog for $130, plus I will send you a copy of my movie, The Remission Song.

If you want the frog, please e-mail me and let me know. I'm only checking e-mail once a day, so the reader who gets an e-mail to me first will get the bracelet. 

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Please know that I do not feel abandoned. I feel your love and concern. E-mails are always welcome, even though I am only answering a tiny fraction of the mail I receive.

"Jeanne Can't Come to the Blog Right Now"

I'm taking a short break from blogging. 

That's a quote from Nancy. Send me your quotes as I take some time off. 

Postcard From Nebraska

Teri sent me this postcard weeks ago. 

I find the physical Nebraska to be intimidating--in much the same way as I feel about Alaska, where my youngest sister lives. 

And yet, like Alaska, it is so beautiful. 

The last time I was in Nebraska with Teri, for a cancer fundraiser put on by the beef ranchers, there were hail storms with stones not "as big as golf balls," but more like "the size of baseballs." 

These did serious damage to cars. (And people, I suppose, but the only stories I heard were about damaged cars. Teri? Answer that one, please.)

See: Cattlemen's Ball

Teri and I both modeled in the fashion show--don't ask me what I allowed the hairstylist/makeup artist to do to me. Monica and Teri could tell from across the tent that I was upset--the waterproof black eyeliner that required fine sandpaper to remove... that was the giveaway. My hair, which is very fine and needs to be treated gently, was teased, sprayed, and then teased some more. Then sprayed some more.

Even gentle shampoo and warm water couldn't unglue it. I never use hairspray. Bad for the environment, bad for my hair. 

I fell asleep at the keyboard on October 23 as I was writing this in my hospital bed, and just got back to it today, November 13.

Teri--I miss you. I'l come to Nebraska again, if we could figure out the right time of year. They already have what we Seattleites would call "major snow" now ... And I could not face the twisters in the summer.

 

Photo: @ Teresa Hartman 2011.

@ Jeanne Sather 2011.