Amyloidosis support group, Feb 20. Conversation

Esther demonstrating stress reduction technique
she learned at her support group.  See bottom
for pictures of Esther doing other exercises.

There were a lot of people at the support group yesterday [Saturday, Feb. 19], maybe 40.  Dr. Kevin spoke, he's a Kaiser doctor who's had a heart transplant because he had amyloidosis. (Last name?)  I don't even know that, everybody just calls him Kevin.  He's in his late 40s, early 50s, and he still puts in 8 hour days at Kaiser.  But he no longer heads his department.  (What department?) He never said.

Kevin told us that amyloidosis causes the body to accumulate too much protein.  Usually, pieces of protein in your body come together in a curved shape, and your body is able to eliminate them. But with amyloidosis, they come together in a flat shape, so your body can't eliminate them, and they attach to one organ or another of your body.  And that means amyloidosis isn't just one disease, it affects different parts of the body differently.
  
With him it was the heart, but he's not going to go through another transplant, if this one doesn't work, that's it.  Kevin and his wife went to Paris recently. but he really isn't well.  But his approach is that he's going to everything he can, while he can.

With me they knew right away I had amyloidosis after I had that problem with my knee.  But most people say the doctors took a long time to diagnose them with amyloidosis, maybe a year, going from one doctor to another.  One man was there for his wife, who has amyloidosis in her throat, so it was hard for her to swallow food.  She went for a year and a half before they knew what was the matter with her, and they could settle on a treatment.

Some people are treated by chemo, like me, and some get stem cells.  Kevin said he had bad reaction from his chemo, so he stopped, it just took too much out of him.  But I'm not eligible for stem cells, that's why I'm on chemo. (Prognosis?)  My doctor says he doesn't know right now.

They asked if I was still planning on going to Israel, and I said the wedding had been postponed until May, and it might be postponed again until August.  Now that I'm back on the injections, August might be better for me.  Whether it's May or August, I'll need to have somebody on the plane with me.
  
(Injections?) My hemoglobin went down to 9, it was 10 before, and everything else was higher or lower than it should be.  When they gave you your results, they show you the normal range, so you can see if your scores are OK.  Maybe I'll be better now since just finished my chemo week.

In the end, a woman gave a talk on relaxation, and taught us a technique She was so good that almost everybody fell asleep. Some people have trouble falling asleep at night, but not me.  My hands wake me up sometimes when they hurt, but I never have trouble falling asleep in my chair.

(The technique?)  If you're stressed, rub the tips of your thumb and index finger together until you feel like you're calming down.  While I do that, I try to withdraw from what it is that's bothering me.  [Helpful?] For me, yes.  Another helpful thing is to prepare carefully for what I need to do.  Like when I go to bed at night, I check that everything is like it should be, because it's hard for me to get up again.  It's better to prepare than to repair.


Pictures of Esther doing other hand/arm exercises, to which she attributes diminished pain in her hands.

Esther discusses public finances and the state of public education

We talked about money at the current events group.  We started off with the problems in Wisconsin.  Richard [the moderator] said the same problems were going on in California.

Jerry Brown was proposing a 50/50 solution, half of the budget shortfall made up by cuts in services, the other half by something else, I think it's tax hikes.  Supposedly it's because retirement costs are out of control, state workers retiring with big benefits, some getting more than when they were working.

But nobody was happy about cutting services, or the cuts to higher education.  Tuition has gone up so much.  There wasn't much contention, but everybody was talking about the difference between then and now.

Richard said that when he went to Cal Berkeley, tuition was $50 per quarter.  Reagan raised it to $70 per quarter, and everybody complained, but then the next year it was $80.  When I went, when Brown was governor the first time, I could pay for my tuition on my secretary's salary.  But now kids carry huge debts when they graduate.

Another thing that's different from Richard's time is how Cal gets its money.  When Richard went, they didn't have to solicit money, they were a public university.  But now the alumni gets calls all the time, and even so, most of their money comes from tuition.  Or from the corporations that fund their research.  Funny thing is, they never call me.  But I get calls from the library asking for contributions.

We talked about endowments too.  Some college have huge endowments that pay for most scholarships, like Harvard. Harvard hired 3 men to handle their endowment fund, then fired them because they were too arrogant, and hired a woman instead.  Then the endowments were halved, so they fired her too.

And we talked about elementary school.

Richard said they back in his day, Catholics went to the parochial schools, Protestants went to private schools, and the Jews went to the public schools.  When I went to school in Philadelphia, it was really a mixture, blacks, white, Jews, Catholics.  Maybe because it was a slum neighborhood.

But I think I was lucky, I learned early in life to get along with many different kind of people.  Don't remember too many black kids when you were going to elementary school in Walnut Creek.  Were there Indians from the reservation in the school when we lived in Banning?  [Don't remember]

Things change.  When I first went to the swimming pool in Walnut Creek, I would wonder what my mother would say if she saw the scant bathing suits.  Now bikinis are nothing.  I remember the first time I saw somebody in stretch pants, it looked like she was wearing underwear in public, and I was shocked. Then I thought "Now I'm my mother."

Of course I don't get out so much, so I don't see so much.  I'm housebound now, hope to get out more come summer time.

Going to the amyloidosis support group tomorrow, a woman there's going to to talk about dealing with Cancer through imagery.  I'll tell you all about it, promise.

A break in the weather

We're spoiled in Northern California, one week of unseasonal cold and rain and you'd guess much of the adult population is confiding notions of cosmic persecution to their indulgent therapists.  It must seem ridiculous to complain, especially on the net when you might be talking to people who are dealing with, you know, like blizzards.  But we couldn't help ourselves, we felt forsaken in last week's mid-February cold snap, after fruit trees had already started blossoming, and then suddenly we couldn't go outside without wearing serious coats and carrying umbrellas.


And then just as suddenly, last Sunday, the siege lifted.  And behold, our suffering might even had had a purpose.  There was Mt. Diablo, dusted with snow, a sight that might come around every decade or so.  And the hills were a vivid green, an ephemeral, but almost painfully beautiful state they achieve for a few weeks in a non-drought year.


Time to get out ye olde cell phone and take some pix...

Gale and Esther out for walk, 
blossoms in background

Looking up towards the Esther's house

Oak tree out back of Esther's house

Hills as seen from Esther's living room

Woodland creature in Esther's backyard.

And there's the proof, Mt. Diablo really 
did get  some snow! Proof positive 
snapped just before 
the Ygnacio off-ramp on 680.

Conversation with Esther Saturday, February 12

Esther took some time Saturday to discuss the Egypt crisis, Chinese vs. Jewish mothers, and some of her health issues.


What did you talk about at the current events group?

The funny thing was, they barely mentioned Egypt.  It seemed like Mubarak's resignation settled everything.  There was a little talk about that place he went to [Sharm el-Sheikh] and how long he would stay, but that was it.

The main topic was something Richard read, about a Chinese mother who said she didn't allow her children to watch television, or anything like that.  She made them spend all their time was spent on schoolwork.  So we talked about Jewish mothers, how they treated their children and stressed education.

I said there was a mother in Lafayette who said you could emphasize education too much and was cause emotional problems in children.  Someone else said that in China, kids focused so much on passing the college eligibility test when they were in high school, that when they got to college afterwards they were ready to have a good time, and they just floated through.


Is that a good system?

Most of the people in our group felt it was not a good way to do it, it was better not to make one test so important.  Life is more than just the two covers of a book, more than education.  That type of thing can produce troubled children.

One man said his mother always told him that if he studied, concentrated in education, he would be a mensch.  He wasn't sure what a mensch was, but he did what she said.  And he became a lawyer, his area was international law, involved in some important decisions.  Now he's happy his mom stressed education.

One thing to keep in mind was that everyone there was a parent.  Nobody wanted to confess that they hadn't done well.

How do American and Chinese college students compare, academically?

American students are not studying enough. There's too much emphasis on athletic competition.  In college, American students had to study harder.

But you know, somewhere I read that a man my age said "I'm sorry for every pleasure I denied myself."  We work, we study, but a lot of it is luck.  Life carries in the direction we're meant to go.
  
And I've got a problem myself.  My hands are really hurting when I walk with the walker, because I put my weight on them. Now I know whether to walk, and help my legs, or sit and help my hands.  Maybe I'll do compromise, I'll do 10 laps instead of 15, and do hand exercises.  [A lap is a round trip from her bathroom to the piano room, about 50 ft.]

My chemo starts on Monday, but I forgot to order my chemo medication.  Now I'm waiting for call from pharmacy, so I better say good-bye.

Conversation with Esther Sunday, February 6

Picture of the Week #1
Gale & Esther
In front of Esther's house after walking
to the end of Hillview Drive and back.

Picture of the Week #2
Gale & Esther
Just after taking picture #1, in front
of the house where the Graham's lived.

There's been another a big improvement in Gale.  I've been saying that a lot recently.  Now she's willing to go places by herself, she wouldn't do that before.  She just needs to know how to get there.  The other day she was saying she wanted to go to the library, and we talked about who could take her.  And then she said that's OK, I can just take BART.


Did you know Mr. Graham died, our neighbor across the street since we lived in this house.  His son was down from Oregon, and came over to tell me the news.  That was kind of him, he's a nice boy.  He works as a printer, and has three children of his own.


I really enjoy my Saturday visitor Denise.  At first it didn't seem like we'd have much to talk about, but it turns out we do.  It's funny how life turns out, Denise's daughter ended up working in a prison, processing new inmates, after studying something completely different in college.  And she's happy with what she does, she tells everyone about her work.  When she got married, Denise made a photo album of the wedding, and then realized all the pictures were of her family, none of the groom's.  She didn't want to show that version to her new son-in-law because she thought it would offend him.  So she moved some pictures around, added others, and now she has two versions to offer -- but her own son doesn't want either one!  When he was little, he'd always complain that none of the family pictures showed him alone with his parents, they all featured his big sister.  So maybe he felt like he was being ignored again.


Before you came over I was reading on AOL about Egypt.  Now Obama is saying he doesn't want Mubarak to resign, he wants them to take things slowly until the Vice-President can take over.


What were the highlights of my week?  I can think of a few.  First off, I saw a woodpecker on the tree outside my window, with his little red hat.  Imagine, someone from the slums of Philadelphia getting excited by seeing a bird.


Another highlight was seeing Dennis and Ginny when they came up to visit their daughter Becky.  Becky's husband is remodeling their house, so they have no kitchen now, and no bedroom floor.  Dennis and Ginny's daughter in Texas is getting married, and they're going to the wedding.  But they're going to take their time and do some sightseeing on the way down.


And of course there's skipping my blood test this week because my blood counts are so good. That's definitely a highlight.


One thing that wasn't a highlight was the TV.  I turned it on, but the shows were so dull.  Maybe someone who reads the blog can recommend something.  Althogh actually, I'm more interested in books than the TV, please tell me if you've read anything good.