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Billie - 15 Mar 2008 14:46 GMT

Well, guys and wives, last week was interesting. Jim got a call from his
doctor's office. Surgery has been pushed back to April. Our urologist, the
one who took such good care of me when I had four kidney stones at once, has
been very ill with some of his own! We know his staff pretty good, and Jim
was laughing, cutting up with them, and they said that he has been really
ill with them, so as a UTI sufferer, I'm guessing he's had an accompanying
infection maybe. He even had to close one clinic near to us in Missouri.

Guess you can imagine that we spent our hour of *our time* fist almost with
no words, and then slowly talking about our feelings. I have one page
specifically dealing with that, but also have a couple before that which
account for our differing emotions with everything. We were really all set
to go for it all Monday (nothing changes about my treatment; it is a
necessity, and the delay of one week is causing symptoms with me).

The direct link about the day we got the news, and I think the two days
prior to that is my own emotional adjustment from my point of view of having
to leave home for a week or more.
http://andlifegoesononedayonestepatatime.blogspot.com/2008/03/rolling-along-with
-flow-whatever-it.html

Thank you all for being here. *I* need someone to talk to, and I find you
all so receptive.

Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

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Steve Kramer - 15 Mar 2008 15:58 GMT

> Well, guys and wives, last week was interesting. Jim got a call from his
> doctor's office. Surgery has been pushed back to April. Our urologist,
> the one who took such good care of me when I had four kidney stones at
> once, has been very ill with some of his own!

I'm sure he's a nice and caring uro. I note you have said nothing of his
skill with kidney stones. I cannot recall if you have eluded previously to
his skill as a surgeon or as a prostate surgeon.

I only bring this up because surgery on prostate cancer is intended to be
curable and is time sensitive. When he or his office workers become ill or
have serious emergencies, remember this phrase, "It is not my problem."

I recently had a call from my uro's office telling me he was going out of
town during my next appointment and wanted me to change by a month. If you
have read my prose, you know that I have tremendous faith in my uro. But,
my response was, "No. THAT is not MY problem. I need a shot in my butt
every four months or I could die. YOUR problem is to see to it that I get
my shot" Okay, it was somewhat melodramatic (only somewhat), but I'm
getting my shot on time.

Since you had kidney stones, you know that it doesn't take him out for a
month. He just pushed some of his less vocal patients into April. It's not
your problem -- unless you allow it to be.

Signature

PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08
Non Illegitimi Carborundum

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Billie - 15 Mar 2008 16:55 GMT

Thank you a lot. Steve. No I've not talked much about any of things you
mentioned, because I have just been learning what is what as far as this
cancer (any cancer actually) is all about, and been trying to read and learn
from you guys, whenever I can stay awake. My blog addresses my problem with
my disease affecting my MG sleeping (it is restorative of symptoms
temporarily, my friend), Therefore, I do not get here as oft as I wish, but
surely do find lots of information.

I purposely have not said anything about my involvement with his urologist
(I have not reread what I wrote previously) because this is Jim's issue,
not mine. It is not where I have wanted to be, but I have been in the
background. I have not been able to talk to the doctor, and there was going
to be no opportunity to do so. I wish I knew how other wives handled, and
were handled. Joan has written to me so I can find out about the robotic
after care.

Jim has never been sick, and knows nothing about proactive care. (I argue
with mine ;) Also, he wasn't told he *had* to take the date, she did ask
him if he would be comfortable with that. I have no idea what the other
option(s) would have been. He needs the "comfort as an old pair of shoes"
so if it meant going to another doctor, that would have been harder on him
than waiting five more weeks, or even seeing if Gubin could do him sooner.

Steve, I really appreciate your words. You have NO idea how far I have come
in speaking up, and standing up for myself. My time at ASD has helped me
tremendously in growing in this area. Gosh, I could keep on, but have so
much to do to get ready to go to the hospital Monday, and have to do it all
from my bed here, plus I have to allow for *down time* if my MG acts up as
it has been this past week because I postponed my treatment to coincide with
his surgery.

I will be staying in touch. For some reason I have trouble signing into the
newsgroups while I'm hospitalized and using dial-up from my room phone. You
are from Cincinnati area? I have a granddaughter in Dayton.

Billie

Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

>> Well, guys and wives, last week was interesting. Jim got a call from his
>> doctor's office. Surgery has been pushed back to April. Our urologist,
[quoted text clipped - 20 lines]
> month. He just pushed some of his less vocal patients into April. It's
> not your problem -- unless you allow it to be.

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Steve Kramer - 16 Mar 2008 12:36 GMT

The salient points, Billie, are the your husband needs a surgeon who:

1. Is very experienced in prostate surgery.
2. Is very knowledgeable in prostate cancer.
3. Is available to tend to your husband's immediate needs.

Familiarity and past association with kidney stones means nothing with
regard to saving your husband's life and quality of life.

Yes, I'm less than 50 miles from Dayton. So close, in fact, that it is
widely conceded that in the not too distant future, Cincinnati, Westchester,
Hamilton, Middletown, and Dayton will be one megatropolis.

> Thank you a lot. Steve. No I've not talked much about any of things you
> mentioned, because I have just been learning what is what as far as this
[quoted text clipped - 66 lines]
>> month. He just pushed some of his less vocal patients into April. It's
>> not your problem -- unless you allow it to be.

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Billie - 16 Mar 2008 17:43 GMT

Oh, Steve, I have done a terrible job of explaining everything!! There are
several reasons for this, the first being I have not seen things written
down, so I cannot remember the details of the doctors, and all. It is not
just one doctor, but a group, with the top doctor doing over 100 robotic
prostate surgeries in a year. Our daughter-in-law is a surgical nurse at
another of the hospitals in Memphis, and she checked with the surgeons
there, and they gave her the top recommended robotic prostate surgeon in
Memphis, and it was this other doctor that I cannot remember his name, and
who will be hands-on with the surgery - I think that is the way. I do know
that our doctor will NOT be doing anything by himself. Anyway, she knew
where, who, etc., to go, and came back satisfied he had the best Memphis had
to offer. You have to know Donnie, to know that she would not let anything
get by her; you and her would get along perfectly.

Now. Having said all of that, let me say this. I would have done it
completely differently for myself. The end result would probably have been
the same, but, well, let's just leave it at that I guess. I've been sick
all my life. He never has, and the least he has to do, the better he can
handle it all around. That's like getting lab, x-ray, and other reports.
He wouldn't even ask what the results were at first. This is of his GP.
Whereas, I study each lab work I have done, compare it to the previous one,
blah, blah, blah. I even ask my doctor to run certain tests due to symptoms
I might have been having. This is MY BODY, and I am trying to keep it going
as long as I can, and with as much quality as is possible. I *love life and
love living and love people* and despise being confined to this bed!!!!!!
Remission? With my age and all the other things wrong with me, the odds of
my being able to live any kind of *normal* life are remote, but I have to
try, have to have a goal. Without anything, I'd wither away and die. I
believe I will die *walking* whether it be with my legs, or from this bed,
but I refuse to be inert if I can do anything about it. Sometimes, I have
no control over this disease. Blah!!! LOL

It was not physically possible for me to go to his appointments with Gubin.
I am a VERY proactive patient. I have to be with what I have. For
instance, there is the possibility of my being sent to the Mayo Clinic
because my physical condition is so complicated and complex. That is also
the top place in the U.S. for Myasthenia Gravis research and development.
*Right now* __ *I* have put that talk on hold because of what *I* am
detecting as results from the IVIG treatments (yes, I get discouraged almost
daily because this is a VERY slow moving process :( and I wonder "what's the
use").

Steve, just as I, and also you, do what I feel is right for me and my body,
Jim has done his research, and made the decisions that are right for him. I
love him so much. I want him around with me for a long time. <tears>
However, if his choice of surgeon (and Gubin is very available IF he would
just ask) should prove to shorten that time, I will just continue to cherish
each moment as I already do. Life is not guaranteed anyway. I saw our 16
y/o son out the door to an out of town football game, and that was the last
time we saw him alive. Maybe we are not as, ummmm, what is the word I'm
looking for, but...... well, it won't come to me. But death is not as scary
for us as it once was. It is not, nor does it have to be all consuming. I
know you know this, and I'm not saying it to you. I enjoy conversing with
you, as well as the group.

Sorry for the length, but what is a support group for but to air feelings
and emotions. ;) I can just barely see today, so what else can I do, but
just write. LOL

I can surely see that area growing together as you described. We lived in
Dayton for four years back in the 70's, but have seen that area all grow as
we've made our many trips up there to see her for 27 years. All of a sudden
I cannot remember if is Centerville or Middletown where she actually lives.
That is an example of my memory now. I know, but cannot recall it just this
moment. ;)

Thanks, and I really do appreciate you!

Billie

Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

> The salient points, Billie, are the your husband needs a surgeon who:
>
[quoted text clipped - 80 lines]
>>> month. He just pushed some of his less vocal patients into April. It's
>>> not your problem -- unless you allow it to be.

Signature

Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/visit/billiewages

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

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Steve Kramer - 16 Mar 2008 19:26 GMT

> Oh, Steve, I have done a terrible job of explaining everything!! It is
> not just one doctor, but a group, with the top doctor doing over 100
> robotic prostate surgeries in a year. Our daughter-in-law is a surgical
> nurse at another of the hospitals in Memphis, and she checked with the
> surgeons there, and they gave her the top recommended robotic prostate
> surgeon in Memphis,

Good. Then that's who you need.

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Alan Meyer - 16 Mar 2008 22:18 GMT

> ... with the top doctor doing over 100 robotic prostate
> surgeries in a year. ...

That's excellent. I have read that the threshold between the
best surgeons and the good ones is 50 procedures per year. The
surgeon you found is well above that. He's obviously highly
experienced.

> ... Our daughter-in-law is a surgical nurse at another of the
> hospitals in Memphis, and she checked with the surgeons there
> ...

Also excellent. I think the medical professionals know each
other better than patients ever can and they know who the top
doctors are.

> ... I *love life and love living and love people* and despise
> being confined to this bed!!!!!! Remission? With my age and
[quoted text clipped - 4 lines]
> legs, or from this bed, but I refuse to be inert if I can do
> anything about it. ...

My hat is off to you Billie. We should all have this attitude
and this strength.

> ... Jim has done his research, and made the decisions that are
> right for him. I love him so much. I want him around with me
> for a long time. <tears> However, if his choice of surgeon
> (and Gubin is very available IF he would just ask) should prove
> to shorten that time, I will just continue to cherish each
> moment as I already do. ...

Jim may have made some good decisions on his own. And they may
work out very well for him. But you can tell him that he can
sometimes improve his odds by going with the most experienced
doctor.

Best of luck Billie, and my best to Jim.

Alan

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