Hello everybody,

I started out trying to be brief, but this turned into an incredibly
long warble.  However, indulge me because warble I must.  I am
warbling for my life.  I need to talk, and only my PC soulmates
understand this language.

You know there is a "Ladies Only PC group" on the Cooley site, and I
read something there about them planning a cruise.  I don't know if
they're serious, but wouldn't it be great to go on a cruise with PC
people only.    It sounds like paradise.  To be among your own!  And
they would have a midnight buffet full of cruciferous vegetables!
Anyway, I hope the cruise is not ladies-only because my husb. just
loves the idea.

Seriously:

Ever since my husband got his second positive psa test (first one 1/3
(.12),  second 2/7 (.l4),  I have been understandably upset.  The
biggest problem is that my body is playing tricks on me.

**A few weeks ago, the day my husband got the first result, I was
serving dinner that night and just felt unsteady and I was weaving
around like a drunk and bumping into walls.  I managed to sit down and
asked my husband to bring in the food so that I wouldn't drop
everything on the floor.  I was really shaking.

Unfortunately, we had to wait almost three weeks before we talked to
his surgeon about the result, and it was very nerve-wracking.
Additionally, his doctor had been behaving strangely unresponsive,
which made us even more nervous.  In early Jan. we had made numerous
requests from this doc for my husband's path report and "whatever else
might be useful to do some nomograms".  I just wanted to have this
stuff in a file.

Anyway, they never responded.  And 3 weeks into that my husband got
the positive PSA test (*done for convenience by his internist*) and we
immediately called the doc and faxed the result over to the surgeon,
but he didn't respond.  I wracked my brain to think of an explanation
for this slack behavior, and the best one I found, however lame, was
suggested to me by another doctor, namely: Some docs just feel
threatened when you request records from them.  (I am mentioning all
this only bec. I know others have experienced it.)  But then, a couple
of days later, I had an idea which I think is closer to the truth, to
wit, my requesting records, plus the fact that I'm in the legal
business (I'm sure he had asked me this, conversationally).  Anyway,
if this is true it's outrageous, because I've never sued anybody in my
life.  It's like my father used to say, "The shoemaker goes
barefoot".  So it was disturbing enough to contemplate a possible
recurrence of the ca, but it just galled me that the doc was making
things so much worse.

I tried to make an appt for J. with an onc, and they told me "Call
back when you have all the records in hand".  Anyway, I had no choice
but to ask Patient Relations to intervene about this whole thing
because if this surgeon wanted to fire us, we'd gladly go elsewhere
but we have to have the records, for a start.

Anyway, my husband saw the doctor (alone) and what he said was
predictable: PSA less than .2 he's not worried about, and come back
again in 3 mos and 6 mos.  He did not do a DRE and I'm curious what
people think about that (you know, to check the prostate bed).  I am
wondering also, since his first test was done by Quest Labs, would it
have been a good idea to have them repeat it (5 wks later)?  Just a
thought.

Anyway, I'm disclosing all this sensitive stuff maybe because I'm
self-destructive,  or because I don't expect to have any other
interactions with this surgeon in the future. All I am concerned about
is that he forward all the relevant records.

Because I had once complained about the doctor/vitamin salesman at
Columbia (to you all), I told my husband, "We'll have to move away
from here because we'll never get medical care in this town again".
So he said, "Where do you want to move?".  I replied, Baltimore,
Cleveland and Rochester, MN, in that order.

This is where somebody might be able to advise: **I forgot to mention
that, as advised here, I set up an appt for him with a rad onc for
2/28**.and am trying to make one with a med onc.  Anyway, what the
surgeon sent me last week as far as "records" was a copy of the
original biopsy report, post-op path report and a PSA result done by
an ED doctor at that same hospital  6 mos. post op.

I would like the surgeon to turn over everything he has because I feel
it's necessary, including stuff forwarded to him initially by J's uro,
and also any relevant data of his own, including his notes and copies
of any imaging done.  Please advise about this.  Is this a reasonable
request?  Is there something specific I should ask for? I don't want
to go thru another hassle.  [Also, if another hospital requests the
info from the surgeon directly, are they going to send the whole file
or just the few pages they sent me.]

[Also, I just called J's internist and asked him to prepare his
records (some PSA's done there) for pick-up and sent an email to the
urologist for the same reason.  I am so mixed up that I can't remember
where I put any of the stuff I already had.  I am hoping these doctors
will comply without a hassle.

**Also, Since we got the second PSA result last week I have been
feeling down but also extremely frightened and nervous.   More like
terrified.  Yesterday at lunch I wasn't feeling well and I was shaking
and stuttering (which started in the last few weeks).  I also
developed a migraine, and my blood pressure went up (did not any of
these before his dx).

Then J. got me aggravated:  He said to me, "You look sick".  Are you
stressed out about something?  Maybe about your mother being here?  So
I said, "I'm stressed out but not about that".  I think the answer was
pretty obvious; you had to see the elephant in the room unless you
were shutting your eyes. This is something that absolutely drives me
crazy about him: that at every stage of this journey he is in complete
denial.  I am really getting fed up with this behavior.  Also, I told
him to ask his ED doctor why his penis is getting crooked and he just
never made the call.  You'd think he'd care.  And for the longest time
he said he "did not notice" his genitals "changing shape".  Well.

Then last evening J. said to me, "It sound like you're having trouble
breathing", and I said, "Not that I know of", but I realized I was
pumping breath like a locomotive.  Hyperventilating.

My concern is that I feel guilty showing this obvious distress in
front of him.  Intellectually, he knows that he has a serious problem,
but he has not even mentioned it once in a few weeks.  I am sitting
around reading up on this and making appts.  I am starting to get sick
of his not doing anything.  He is going to the gym all day just to be
away from me.

As far as remedies, I have some klonopin for anxiety, and some ambien
to sleep.  Also, I dug out of my drawer some Inderal I'd been given
some time back because I thought it might help with the shaking.  But
apparently all this is not enough.  And this stuff  can make you very
drowsy.

Honestly, I don't like the idea of J. having more treatments in
principle, because it's like, he was already treated for this, it
doesn't seem fair.  And now I'm skeptical about everything including
using rad for recurrence.  But nothing terrifies me more than hormone
therapy.  I think if he is going to die, maybe he shouldn't stretch it
out for years (on ADT) and just get it over with.  I've concluded that
death can be a beautiful thing if done right.

Another change in my life that bothers me  is that my whole life has
become "cancerized".  Yesterday I went "cancer shopping" in the
supermarket. I bought whatever is conceivably beneficial to him: fresh
watermelon, pink grapefruit, papayas, etc.  I wish the supermarket
were arranged by color, because everything I need is pink (pom juice,
a darker shade).  Then I passed a section where they had these pickled
peppers and sun-dried tomatoes which were very expensive, and we don't
even like them, but I thought they might be good for him.  Because
here, peppers are king.  So I put them in the cart.  I don't shop
anymore by choosing what I like.  [However, I did feel sorry for
myself and bought a jar of chestnuts in cognac sauce which was very
good.  *Does anybody know if a chestnut is a real nut and could
substitute for some of the other less appealing nuts on the list?".]

Finally, I went to the herring section, which was the highlight of the
tour.  But there were at least 15 different types (this is a store
that caters to gourmet types), and if you're like me and you can't
make decisions, this presented a real challenge.  I ended up buying
some herring in mustard sauce because the label said it had canola oil
(good) and also beta carotene.

I had already bought him a bag of peanuts the other day (because he
won't eat walnuts), and he is developing a real belly even though he
is going to the gym almost every day.  It's the pom juice, spaghetti
sauce, nuts and whatever.  I read that a belly is not good for a man
because of heart attack risk, but better that than the alternative...

Yesterday at lunchtime he told me he was going to have a piece of
chicken.  I told him, "Wait, "I bought you this absolutely delicious
Swedish herring.  You must try it". So reluctantly he said OK.  He
asked if I was having some (and i definitely did *not* feel like it),
and I said, "sure".

Then we were sitting at the table and he was serving himself some of
the above and he asked, "Would you like some?".  I replied, "Why don't
you try it first"?  He and my mother laughed; it was if I was using
him as a "food tester".  Then he bit into his herrring sandwich and
immediately keeled over.  My heart just stopped and my mother
screamed.

I asked J. "What's wrong?" and then he jerked himself upright and said
he was only playing a joke (acting like he'd been poisoned).  Well,
some joke.  But I was pleased because he took a second helping of the
herring.

Also, a few weeks ago, I had bought him a whole lot of supps, but he
refuses to take the following: garlic, turmeric, blueberry extract and
broccoli sprouts.  What's the big problem with a few more pills?  And
I'm embarrassed to write this, but we don't have much of an income
right now (more stressful than ca, if you ask me), and the all-around
supplement I ordered from Theralogix (the "meat" of the supplement
diet"),  was not delivered because of "insufficient funds."  This just
upset me terribly.

Anyway, at any meal the conversation inevitably turns to what food is
good for him.

Another big problem for me is that my mother comes over sometimes and
she just drives me crazy.  She is just plain obnoxious, I hate to say
it.  I reluctantly took her to the supermarket with me on Friday, and
she did what she always does.  Asks, "what do you need this for" and
why don't you buy a different brand, and this time, in particular, she
was upset because I had treated myself to some roses ($6.99).  She
insisted it was a frivolous expense and wanted to put it back.  I
practically slapped her.
______________________________

[OT - Gardening]  Skip if you want.

I can't live without flowers.  They just cheer me up.  This is OT, but
I need to warble.

I am very proud of the huge garden my husband and I kept on the roof
of our building 11 stories above Manhattan, overlooking the Hudson
River.  [It was great, but then the bldg. manager said it was a fire
hazard? because we were using the hose, and they made us remove
everything.]

I am very proud of my potted offspring:  The first flower I grew was a
pink "dinnerplate" dahlia, and it was just stunning. Husband took
pictures of it, and I can remember every detail.  We also had about 15
rosebushes (all in pots), exotic plants (hibiscus, lantana,
bougainvillea), and lots of flowering plants.  We also grew some
beautiful delphiniums.

This was a true labor of love, and that's why I am indulging myself in
talking about it.  It calms me. Container gardening is the best,
because you can choose the  best potting soil and mix it with whatever
you wish, manure, peat moss, bone meal etc.  (Also, you can design
"living floral arrangements").  We had to go to CT or MA to haul in
all that soil and then drag it up 11 floors.  Also, it was good
because there are no pests or deer to interfere.  And the sun shines
like crazy, because there is a "solar friendly" surface on this roof.
Plus, we fed each type of plant a special diet: rose food, tomato
food, flowering plant food, etc.  My husband was very devoted to his
garden.

Best of all, we grew the most magnificent cherry tomatoes.  Before
that, I had never tasted a real tomato. And we seasoned it with some
home-grown basel (a neighbor who grew herbs said, "Help yourself".)  I
wish I could have entered these tomatoes into a 4-H contest.  Believe
it or not, I think they have a branch in NYC.  My husband said we
should start a produce business called "Manhattan Farms".  I also grew
the most incredible eggplant (what Mary F. called an "aubergine", as
she used the word in a sentence a couple of times, "My son said that
his Dad has a c-ck like an aubergine".)

This eggplant was my pride and joy.  It was absolutely perfect,
blemish free, and a beautiful deep purple.  This would definitely have
taken first prize in a contest.  But I didn't know how to cook the
eggplant, and so I gave it to a friend.

Anyway, these are my happy memories.

I know this is off-topic but we have a lot of Brits here, and the
stereotype is that they are all crazy about gardening.  I know that in
my Encyclopedia of Roses, it seems that almost all of them are bred in
the UK, in England, Scotland and Ireland.

I was just thinking they should name a rose after PC, and I'm freaking
out, because I think there are a number of roses named after various
diseases.  In fact, I'm sure of it.

_______________________________________

More on PC:

Anyway, in a serious vein: I am going to ask for some help in
interpreting the records that I have in front of me: for example, 3
PSA tests done by 3 different labs.  But I'll put that in a separate
post.

Anyway, apropos of how PC affects my life: my interests have changed
dramatically.  As google suggested, all I'm interested in is PC, PC
and PC.  But other diseases are also welcome.

Friday, we had a houseguest who arrived to spend the weekend, one I
hadn't know before.  He sounded really interesting: his family
background, job, travels all over, and he was very personable. (My
husband found out yesterday that he does stand-up comedy.)

Anyway, early on Sam mentioned that his father had passed three years
ago, and we were immediate best friends, because so had mine
(approximately).  Then I asked him, "What did your father die of"? and
he shook his head sadly but didn't say anything.  Then I asked him
again, and he practically whispered, "stomach cancer".  But was was
really interesting was that his father had suffered a massive heart
attack at age 42 and had managed to make it to 76.

I don't know anybody personally who's had a heart attack, but my
father had a stroke, and it's all in the cardiovascular family, and so
I was glad to go on about that.

At some point I had told him that I was very distracted because a
"friend of mine" had cancer.  I said this only because I needed to
explain why I was so spaced out: he had had to ask me four times for a
towel (which I usually provide).

Anyway, I got the idea that cancer was not this man's favorite
disease.  But this is what happened next:  I had a piece of paper in
front of me, which was a recipe for "Enhanced Tomato Juice", which I
was planning to prepare.  So he asked me, "What is that?", and I
handed the paper to him.  Then I realized that on top of it it said
loud and clear, "acsp".  I was surprised he didn't flee. Anyway, I
never got to talk to him about anything but death and disease,  which
was too bad.

What amuses me is that we have house guests pretty often, and they
stay in the guest room, which is also my work space.  And it never
occurred to me that I should maybe put away all the reading material
that's around: stacks of papers about PC, ED, etc. It seems that
penile rehab is my favorite subject.  But until yesterday I had never
thought that maybe I should keep this juicy stuff private.

Also, with my husband, PC dominates the conversation, even tho he
doesn't like to talk about the subject.  He told me he was concerned
that I was spending so much time on PC-related things because I was
worried about him.  So I told him, "No, this isn't about you, it's
about a whole lot of people."  I didn't want him to feel nervous.

But he did get excited about an article I found the other day on the
"evolutionary biology" of cancer (which I hope to talk about), and so
occasionally he does show an interest.

This is not in order, but I have to purge myself of just one thing.  I
mentioned that I'd had some problems with cooperation from his
surgeon, but I didn't want to make a big deal about it.  But last
Thursday I got a call from a guy who identified himself as a doctor
who is "head of quality control" for the Uro dept of that hospital.  I
told him I really didn't want to talk about this anymore.  Anyway,
just the fact that this man told me he was reviewing J's records and
was looking into this some more, made me frightfully nervous.  I mean,
is it routine, or what??  Could there be something amiss.

The conversation with this doc somehow got to me, so I called my
shrink and told him everything, all the while weeping profusely.  Then
he said to me, "You know, this is all about guilt: you have a lot of
guilt for hating your mother.  So you are punishing yourself".  Well,
I really gave it to him!   If he had been there in person I would have
punched him out.   Truth is, if I didn't like him prsonally, I would
take a hike.  But I have to have someone impartial to talk to.

Anyway, any advice is welcome.

If you made it until here, thanks for listening.  I feel enormously
better for having written all this.

Leah