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Someone asked for my story and I promised it.
I hate writing long stories, but this is
a very short history of my cancers.
My story begins December 25,
1973,
when I went into
hospital to have a tumour removed from my uterus.
Previous to this time, I had been bleeding
for a couple of years .
I heard of Hinsdale Woman's clinic
and that they did great things with
women who had problems.
I met with a great doctor at the clinic,
who wanted me to try a new douche
from Japan.
It was to arrive at a certain pharmacy in a big barrel,
and there was only going
to be two places that would be using it. It finally arrived and it was great.
I'm sure many of you all have experienced vaginal infections
and all the different ways to treat them!!!!!!!
The douche worked. That was probably in the fall of 73.
Then I began to haemorrhage
Had a D and C. waited for pathology,
Called my doc.
"HMMM"
Strange he said.
I'm going over to
lab to check this out.
I asked if it was cancer and he said
that is what the results are saying,
but he didn't believe it and thought the douche had changed some cells in the vagina.
Lab
results came back
Endometrial Interstitial Sarcoma.
Later MD Anderson told me that was the
same thing as LMS
My doctor was to be out of town and he wanted one of his partners to do the
hysterectomy.
They operated and the doc said "you've had a very Merry Christmas, we got it all
Size of a grapefruit.
BUT, there were some spots on the ovaries"
(they left the ovaries, because of my age and I that would
need the hormones)
that they thought were endometriosis.
Wrong!!
It was Leiomysarcoma.
I then had 3 months of radiation to
destroy the ovaries,
rather than cutting me open again.
I had an Egyptian radiologist who said
"Pray to what ever God your have, because that is all we have for you."
As he held up a small file,
he told me that this was
all of the patients that had ever had this disease and gave me a 10% chance of survival.
I believe that I received 5,500 rads over 3 months.
My weight went to 84 lbs. It was a rough time.
Not any drugs to really help the side effects of treatment.
No chemo at that time was known for that
cancer. I believe that Prayer, Love from family and friends,
good doctors and being burned by radiation,
is how I survived.
There is more,
Now it is 1989 in Connecticut.
I'm having flashing lights and black spots in my
eye
Turns out to be an Ocular Melanoma.
I lucked out with the right doc again.
He had studied under Dr. Graugoudas
in Boston.
He had invented the Proton Beam Radiation machine several years before.
There are two of these machines in
the country at the present.
So I went to Boston for treatment.
I have had no reoccurrence.
I do still have sight
in that eye.
Jump to 1996,
Fluid on my lung.
Living in Houston, TX area. Went to MDA, to my wonderful oncologist
that
had been following me for 9 years for the sarcoma and melanoma. He diagnosed me finally with Mesothelioma (
asbestos exposure).
They had been looking for a melanoma reoccurrence.
Life expectancy....3 months!!!!!!!!!!
WHAT, you must be nuts!!
I feel great,
I'm working full time. There has got to be some treatment for this!!
As most of you know, MDA is the #1 Cancer Research Center,
and they are telling me there is nothing for me.
I went to numerous doctors for different opinions.
I have since had surgery to remove my lung in NY at Sloan Kettering.
Unsuccessfully and told I had 6 months to live in 1997 Feb.. This is the # 2 Cancer centre in the US.
As they were
removing the lining of the lung,
they cut thru the diaphragm and saw the
cancer in many areas in the peritoneal cavity.
Very rare to have it in both areas as two primaries.
Less than 2,000 people were diagnosed with this each year at that time.
Then in June, I began a Trial with Onconase, in Austin, TX.
(Onconase is made from Leopard frog eggs)
This involved having one injection a week. I flew there every week for 4 years.
I finally was taken out
off the trial to see if my
diarrhea was being caused from the drug.
Since, I was the longest living person
on the trial,
they had no one to compare me with.
I was stable at this time with the Meso.
The diarrhea is caused from
the radiation that I had 29 years ago.
I have had "d" for a very long time, but now it is almost unbearable.
I can hardly go out of my house to even get the mail.
I'm searching for help for this problem. I'm desperate.
I have told the doctors that I am going to die of the
diarrhea and malabsorbtion before the cancer gets me.
I have been on TPN for over a year,
due to the fact that I can not absorb nutrients.
I can eat and love to do so.
But it just goes straight thru me
This next piece is from Bud, Jill's husband
"She got TPN several years ago for probably
a year plus
but each time she got an infection from anything,
the infection would go to the PICC line
( peripherally inserted central catheter)
because it was foreign to the body.
She almost died twice from infections."
A year ago, I had a bowel resection,
where they could see that the scar tissue
from the radiation was wrapped around the bowel.
The doctor also did see the Meso throughout the
abdominal cavity. He had never seen it before.
They never told me what kind of damage radiation does.
They now tell me
that my radiation is still destroying good tissue.
That is good, because, maybe that is why I have survived LMS,
but on the
other hand,
it makes living day to day a real challenge with the problems it is creating for me now. At the present, I am
having no chemo, only dealing with the "d"
Believe me I would be off and running to start chemo again,
if I could travel.
Just driving to MDA in Houston is an ordeal with the "d".
This has really drained me mentally.
I think I
accepted the cancer much better than the "D".
I've learned to "live" with cancer and not "die" with it.
Hope
If you can look at the sunset and smile, then you still have hope.
If you can find beauty in the colours of a small flower, then
you still have hope.
If you can find pleasure in the movement of a butterfly,
then you still have hope.
If the smile of a child can still warm your heart,
then you still have hope.
If you can see the good in other people, then you still have hope.
If the rain breaking on a roof top can still lull you to
sleep,
then you still have hope.
If the sight of a rainbow still makes you stop and stare in
wonder, then you still have hope.
If the soft fur of a favoured pet still feels pleasant under
your fingertips, then you still have hope.
If you meet new people with a trace of excitement and
optimism, then you still have hope.
If you give people the benefit of a doubt, then you still have hope.
If you still offer your hand in friendship to others that
have touched your life, then you still have hope.
If receiving an unexpected card or letter still brings a
pleasant surprise, then you still have hope.
If the suffering of others still fills you with pain and
frustration, then you still have hope.
If you refuse to let a friendship die, or accept that it
must end, then you still have hope.
If you look forward to a time or place of quiet and
reflection, then you still have hope.
If you still buy the ornaments, put up the Christmas tree or
cook the turkey, then you still have hope.
If you still watch love stories or want the endings to be
happy, then you still have hope.
If you can look to the past and smile, then you still have
hope.
If, when faced with the bad, when told everything is futile,
you can still look up and end the conversation with the phrase...
"yeah....BUT.." then you still have hope.
Hope is such a marvelous thing.
It bends, it twists, it sometimes
hides, but rarely does it break.
It sustains us when nothing else can
It gives us reason to continue and courage to move ahead, when
we tell ourselves we'd rather give in.
Hope puts a smile on our face when the heart cannot manage.
Hope puts our feet on the path when our eyes cannot see it.
Hope moves us to act when our souls are confused of the direction.
Hope is a wonderful thing,
something to be cherished and
nurtured, and something that will refresh us in return.
And it can
be found in each of us, and it can bring light into the darkest of
places.
Never lose hope.
I finally got the MRI with
contrast done Friday to my neck and veins in the chest
to see if they would be able to maneuver
a TPN line in.
This next piece which I have also put in earlier on is from Bud, Jill's husband
"She got TPN several years ago for probably a year plus,
but each time she got an infection from anything,
the infection would go to the PICC line because it was foreign to the body.
She almost died twice from infections.
One side is completely obstructed with a blood clot
also and the other side is
partially closed.
I had another test that determined that, but of course they need more tests.
I'm very weak from malabsorption ,
due to the diarrhea and the colostomy.
Don't think I
will be able to go to Illinois to my grandson's graduation.
Just have no strength.
Only a little pain from the kidney stent and my rt. side, when I overdo things, like lifting .
So I take some pain meds.
I eat OK, but it just comes right out of me, so I feel hungry all the time.
The TPN should help, but it limits me in my water activities
and I will miss that with the grand kids and the
wave runner.
But I guess I'm just not as young as I use to be.
LOL
Guess I better get my butt in
gear and accomplish something today.
Will probably not have access to the PC for awhile, again.
16th June
Have been busy with contractors, restoring our home from Hurricane Ike.
It has been a nightmare.
Contractors used up the money they bid, so they didn't come back to finish the job.
A very long story.
They have been
here 2 1/2 months.
Excuse my typing.
I'm doing it on my laptop in bed at hospital while getting a 6 hour infusion of potassium,
magnesium. and fluids.
I also have the kidney infection again and fever.
Will see another doctor on Friday about the TPN.
Bud got really ticked off and called the oncologist and got the ball
rolling again.
But I'm tired of going in to see this gastro doc and just chit chatting. It's time to do
something.
I know I'm at a high risk, but maybe if I can get some nutrients, I will feel better.
Of, course,
it could be the Meso taking hold.
It the TPN does not work, I will stop it.
Think the doc is coming
Oh, did I tell you that I have reached my 13th year with MESO.
I challenge you to go for it!!!!
Peace to you all and prayers!!^j^
Tue,
23rd June. 2009
From: Jill
Subject: Still hooked up in hospital
Wishing I could be home accomplishing something.
Got so much work to do with putting our house back together.
Everything is in boxes and muddy and rusty.
Have to paint all the antique wicker furniture. Lots to do.
My veins are really a mess. They just put in a new IV line.
the last one was hurting so bad.
The liquids burn so bad and my arms are all puffy
and swollen from the irritation to the veins.
They stick those lines and needles in and jam them and then they mess up and have
to start over.
Today, the fellow did a great job and it went right in.
I see my doctor out in the nurses station,
so I should be hearing from him soon.
I can't sleep at night. Thank heavens for movies on the TV.
Tue, 23rd June 2009
From: Jill Vaughn
Doc was in! There is another M D Anderson clinic in my area.
So.....I have to see a doctor there to see if I can get my infusions there and not have to come into Houston.
Instead of TPN, they want me to get 6 hour infusions twice a week at first to see if I can maintain the nutrients.
I may have to go more often though.
I really don't mind because it really has made me feel good.
And believe me, I was dragging.
Doc said I needed to stay a couple more days,
but he doesn't always tell me the truth on that one.
He said I would only be here 23 hours, too. and it is now 5 days later.
The food here is great. You can order anytime between 6:30 am and 9:30 PM
you can order as much as you like and many times a day.
On Father's day they had STEAK ,
with suateed shrimp and vegetables on top,
asparagus, baked potato, roll, mango salad and chocolate raspberry cheesecake.
Are you getting hungry yet
Got to try and read some more mail.
Peace and Prayers,
Trying to look ahead and not back
Just recently a Doctor told me to
keep looking thru the windshield
and not the rear view mirror.
The "picture" is bigger.
Maybe that is why it is so hard for me to write about my past hospital messes.
I'm stressed,
there is no doubt. I haven't missed but a couple of days going to the ER hospital,
or a doctors office in the past two weeks.
Seems as if nothing goes as it should.
Well this "new" doc has finally got that figured out and has scheduled
my next procedure in
the hospital and to stay over night.
(I hope that is all)
This will require me staying
in the hospital.
This was a piece written by a friend to Jill
Since reading Jill's Story, which I'm glad Deidre made available to us --,
Your strength is really amazing.
I have been
looking for something written in the List Server years ago.
A comment about
your doctor saying,
Look through the windshield, not the rear view mirror
was what sent me fishing through a mountain of stuff for
the poem --
because I
remembered it as upbeat like you
and that it is
very similar to what your doctor said about looking ahead,
not
behind.
Hurry and get well, Jill.
We need you driving (being engineer on
our Train of Life here on the List Server.
Bec
(who has punched a ticket or two in her time)
The Train of Life Some folks ride the train of life
Looking out the rear,
Watching miles of life roll by,
And marking every year.
They sit in sad remembrance
Of wasted days gone by,
And curse their life for what it was,
And hang their head and cry.
I don't concern myself with that,
I took a different vent,
I look forward to what life holds,
And not what has been spent.
So strap me to the engine
As securely as I can be,
I want to be out on the front
To
see what I can see. I want to feel the winds of change
Blowing in my face
I want to see what life unfolds
As I move from place to place. I want to see what's coming up
Not looking at the past.
Life's to short for yesterdays
It moves along to fast So, if the ride gets bumpy
While you are looking back,
Go up front and you may find
Your life has jumped the track.
It' alright to remember
That's part of history
but up front where it's happening,
There's so much mystery.
The enjoyment of living
Is not where we have been
It's looking ever forward
To another year or ten
It's searching all the byways
Never should you refrain
For if you want to live your life
You gotta drive the train!--Author Unknown --
They last time I was in this hospital for a bowel resection in 2001
for two months.
They finally gave up on me and sent me home with "tumour" fever"
since they
could not come up with anything else. I had 104 fever.
One day later I was at MDA and they
saved my life,
but didn't think they would.
I knew it was not tumour fever and it wasn't.
The other thing,
looking thru the rear mirror, after the last kidney stones in 1996,
Mr. Meso raised his ugly head.
Just can't seem to get a break.
And most
important is getting to CALIFORNIA for the CONFERENCE.
I know I've skipped around, but that is the way my mind works.
I've tried to read all your
messages and hope I haven't missed anyone.
Stay well and keep looking ahead!!
I had a nice 7 hour
sleep yesterday. . Right at this minute,
I'm doing good!!, grateful.
When you get to the
end of your rope, tie a knot and hang on.
-- Franklin D. Roosevelt
Date: Mon, 29 Jun 2009
From: Jill
Subject: Infusion Therapy
Just got back
from 6 hours of infusion. Going to do this twice a week.
So far I don't see any difference.
I'm dragging!!
Really do need TPN, but doctor who is going to do the "weird" procedure,
had a heart attack and have to wait on him to get back.
Docs are concerned because I get
the urinary infection so often
and this is partly due to the colostomy and not getting enough
fluids thru the kidneys.
Also the ascites from the Meso and the damage from the radiation.
September 8th, 2009
TPN line has two stitches to jugular vein..
one stitch has pulled out and line is coming out...
no nutrition tonight..
must go to hospital tomorrow to get line taken care of,
then 12 hours of infusion with nutrition and then 3 hours infusion with fluids...
suppose to start physical therapy, but will have to cancel. ...
also have to get blood work done.
So that day is shot.
Next day, doctors appointments.
Sister in law coming to help out.
Jan 3rd 2010
Jill is still in MD Anderson and now in the Telemetry unit
for the heart damage caused from treatment.
She sounded strong, but will be in the hospital for at least another couple of weeks.
Jill has been in the hospital for nearly 7 wee
27th Feb 2010
Last Saturday, I noticed my TPN line was hanging out of the wrist part of my sweatshirt....
It came out of my neck.
THE WHOLE THING OUT OF THE JUGULAR....DANG
Of course couldn't get help till Monday.
So I've spent 4 days at MDA
trying to get a line put in.
Now I've had thousands of dollars of tests that tell them that one side is occluded
and the other side partially.
But THEY think they can get it in. So one day they tried two different veins in
one arm, didn't work...
next day tried subclavial...
didn't work....
next day they wanted a repeat of the venogram.
...finally on
Thursday,
they got a line in the jugular and tunnelled toward the armpit......
so am getting fed
again by TPN line.............
Had to postpone all my PT and OT......
So that will start up again next week.
28 Feb 2010,
GREAT to hear from Jill who has her mojo back....
Bec,
I'm always enjoying your use of words.
I had a lot of time staring at the walls in the hospital,
and thinking of other that have gone before me.
And many thoughts of the warriors and the suffering we
endure.
Believe me, I was ready to go meet my maker.
Making my body work was just too hard.
My care giver wouldn't let me give up.
I had soooo many scans, blood transfusions and thought
I will
never walk again.
Well, I'm walking, with help of a rollator.
and I even catch myself walking without it or the cane.
But recovery for anyone going thru the trials with Mr Meso
is really tough.
You have to monitor your own care
At one time a doctor came in and told me
that they were going to have to cut off my foot,
because the cancer had spread.
I was speechless and had never heard of meso going to the feet.
"Woops,"
she got me
confused with someone else.
"Stay the Course" as Jim and Eve would say,
^j^
Thanks for all the cards and prayers...
just spent 5 more days in hospital
with another UTI.
Serious.
On two antibiotics.
one oral and one IV.
Making
me terrible nervous.
Very weak and shaky. not on pc often.
not feeling well
enough to read and answer.
Still have home pt and ot.
Getting really depressed
over this.
^j^
25th Mar 2010
Getting it at home for the time being.
Walking much better...still a
struggle though......
If it wasn't for my hubby, ......I would have given up weeks ago.
This is hard work!!!
Keep loving your warriors!
We get soooo tired and think
this isn't getting any better.
If Mr. Meso raised his head with me right now, I don't think I could handle it.
Go in for a UTI and come out
with a bad heart!!!!!!!!!!!!
91 days in the hospital..
3 weeks in long term rehab..
I'm tired....
went in because of a urinary tract infection.
And they
overloaded me on fluid and caused heart failure...
trying to recover..
learning to walk and function as a human
again...
Mr. Meso seems to still be calm!
^j^
3rd Apr 2010
In appreciation and recognition of Jill's ADAO volunteerism,
she has been awarded the
Bronze Presidential Volunteer Service Award.
Please join me in congratulating Jill
for her inspirational efforts to help us all.
Jill's award will be presented at the
6th ADAO Annual Asbestos Awareness Conference.
20th Apr 2010
Miracle has happened.
My heart that was damaged has healed itself.
Two different hospitals have run tests and the
heart seems to be the same as it was in Oct.
MDA said it would never be normal!!!!!
^j^
I've been holding off telling you about my recent encounters with the urologist.
Tomorrow morning at 7:30
I will be having surgery to replace the ureter stents and possibly a bladder splint,
depending on how bad
the infection is.
The stranger in my body is an INCURABLE urinary tract infection (UTI)
Never heard of such a thing, but of
course I always have weird off the wall stuff happen to meThey feel the kidney stone is infected and they
can't get it out due to the radiation I had 34 years ago.
There are two other ways to get it, but no guarantees
and 3 doctors won't do it. Too dangerous.
I've spent two weeks dealing with the medical system to get myself okayed to have this surgery.
What a
run around!
I have fever and blood every day and pain on one side from the stent poking in.
Hope the new
ones are better.
They say that they will try to control the UTI with antibiotics.
But nothing can cure it without the stone
being removed and that isn't happening.
I'm still getting PT and OT at home.
Soon, I should start going to a centre for this .
Keeping busy with
doctors. Two appointments on Monday.
One with my eye doctor to check out the melanoma eye.
I've had to
put that off due to all the hospital stays.
April 28 2010
Bud and I will celebrate 47
years together.
And in May we will celebrate 14 years of survival with MESO.
22nd
June 2010
In hospital since Friday. Feeling great right now,
due to being pumped with IV fluids
and vitamins and minerals and blood transfusion.
Got a kidney infection again,
don't know yet what they are going to do about the TPN.
The surgeon that was to do the Tunnel cat had a heart attack
and there is only one other guy who does this
procedure
and he is gone till Wed.
So they may put a regular line in,
but can't do it while I have the kidney
infection.
Now!! Figure this one out.
When they got ready to do the blood transfusion,
they came in with the blood and
just casually asked me
if I knew my blood type and I said yes.
I had a blood card that was given to me in High
School
from a hospital that says O+.
They looked at each other and said it was B+.
They double checked and
even in July,
last year, it showed B+.
Maybe that is Mr. Meso's blood type ????
What do you think??
29th June 2010
Just got back from
6 hours of infusion.
Going to do this twice a week. So far I don't see any difference.
I'm dragging!!
Really
do need TPN, but doctor who is going to do the "weird" procedure, had a heart attack and have to wait on him
to get back.
Docs are concerned because I get the urinary infection so often and this is partly due to the
colostomy and not getting enough fluids thru the kidneys. Also the ascites from the Meso and the damage from
the radiation.
14th Jul 2010
I keep putting this off.
Just so much keeps happening and I can't keep up with
it.
I'm trying to regain my strength again
and have home help with OCT and
PT.
I had this therapy before
and had just got to where I could drive and was
going to go to outpatient therapy.
But on a Thursday
I had an appt with my
urologist.
Of course I was still running fever everyday
and had the urinary
tract infection (UTI).
Sent for ultra sound on Fri.
Not good!
Need to see doc on
Mon.
and then be admitted to hospital.
I didn't make it.
Went to ER.
Was in
intensive care
for over a week on a ventilator,
tube feedings, strapped down,
because I was fighting them so hard.
I remember NONE of this,
which they say is
very good.
The next week was in IC
and then for two days in a regular room.
I
had 3 different infections,
pneumonia, and sepsis.
They tried to get some lines
in me,
that failed. IF I had been awake,
I could have told them that they would
not be able to get into those veins.
So they did a central line in my femur.
Still bruised up from that
and it caused a blood clot.
Blood platelets
dropped.
They were giving me shots every day
to prevent blood clots,
but after
this happened.....
My "new" JI (central line in jugular)
started flowing blood
out the incision site.
Can't use blood thinners any more,
so.......once I got
out they sent me to a haematologist
They don't want to put a
"filter" in
because it could cause more problems,
so I just have to accept the
fact
that this clot could break loose.
I've had a lot of things happened that
will have to learn to accept.
But it makes me mad and frustrated
To make this short....
They must have run every test they could and sometimes
over and over.
Oh, forgot to mention that when I was "restrained"
I pulled so
hard that it ripped my arm open where an IV was.
This is what I was told
WE
are still treating that gash.
Looked liked someone took a butcher knife and
sliced part of my wrist away.
I now have 3 bags hanging off me
and still have the ureter stents.
I have the
nephrostomy tubes coming
out my back from both kidneys.
Urologist wants me to get
the stents removed
and have the nephrostomys permanently.
I'm not happy with
his solution.
l went to a different urologist.
I have to get records from every
place
I have been since this started two years ago,.
That is seven places.
They are
not in yet,
but when they do get the records,
hopefully he will be able to come
up with
another solution to this kidney problem.
They think the infections are
from
two kidney stones
and they were unable to get them.
This
will continue to be a problem
with infection and also all the foreign tubes
going into my body
This guy thinks he can.
So I do have a little hope AGAIN!!!
Hard to keep your spirits up.
Thanks so much for all the cards and notes.
I'm rereading them and enjoying them much more
now that my brain seems to work again,
Hugs and luv to all!
^j^
17th Jul 2010
On my laptop and at least
I know my name and where I am this t
Will try to update you as I go along this week.
Spent 4 1/2 hrs in ER waiting room.
Next day at 4 pm I was put in a room.
I have VRE.
Now you all will just have to look that up.
LOL Anyway it is a UTI and it is resistant
(or let's say mine is) to all but 3 drugs.
Tomorrow I should know which one will be best to treat me with.
Have not seen urologist,
He said he can't do any procedures till the infection is gone.
Which I already knew,
so I will probably be here for awhile.
I'll try to write tomorrow.
Have been trying to catch up on all my mail.
jillypooo
25th Jul 2010
Frustration!!!!!
HA!!!!! 3 hours of trying to get on the Internet!!!!
Will attempt to fill you in.
I have been running a temperature over 102.
Fever every day and
night
headaches. and just not able raise my head.
I tried to keep a journal,
but just too sick to write.
At this point I have two types of bacteria
and now have two different types of candida,
one in urine and one in blood.
Today is the first day without fever in months.
They pulled out the TPN line,
Pulled out the stents.
And replaced the nephrostomy tube
I "think" they plan on replacing the stents,
but everyone has a different opinion.
I "think" the urologist is getting cold feet
about the stones being infected.
I'm getting in deep trouble.
Oh, I left out the IR
Dr. said he had put in a lot of central lines,
but had never seen one like this.
Normally, they can just to cut it out.
Good news........
No fever and back to my good appetite.
Bud is always at my side.
Feeling bad as the pits and I know many of you do,
but..............remember to keep tying ends
to your rope and hang on.
Peace to all,
^j^
26th Jul 2010
Just told thru a nurse(not Doc)
that ESWL will be done at noon tomorrow.
Never came today to do echo of heart.
Want me to sign consent for ESWL.
I said I wanted to talk to the doctor that was going to do it.
Has anyone in this group had lithotripsy??
The only one I know is June Breit's hubby.
Oh, for her words of wisdom right now.
She's riding high with her new wings.
Miss her a bunch.
^j^
29th Jul 2010
Everything went great.
Fever is slightly up this morn.
But no pain.
Just a little
sore throat from tube.
Scheduled to get eye exam.
Fungus infection sometimes goes
to the eyes.
This happened last time.
Your eyesight is effected,
but it
returns to normal
in a few days and I didn't have any infection in the eyes last time.
Thanks for the prayers and cards!!
^j^
2nd Aug 2010
Got home last night.
On IV antibiotics for 4 more days
I
can't take the pills due to malabsorbtion.
Feeling good, but very tired.
Got to work up to getting strength back.
The doc is NOT sure that he got the stone.
WE shall see.
Keep well!!
^j^
4th Aug
Been in hospital 3 times. 3 different hospitals. Constant fever.
Docs said I'm complicated.
I've skipped out of an infusion appt this morning.
Fed up with docs, In hospital 3 days sent home with fever.
Went
into hospital 3 days later for 7 days.
Sent home with fever, back in hospital 5 days.
Sent home with fever.
Many docs suppose to be consulting ON this.
Will see another doc on Wed or
Thurs.
Appt schedule is a little screwy.
They would like to tap the fluid in my belly.
I won't let them.
Already
know it is Meso,
so why stir the shit up.
I'm sure this is the kidneys
and the stints that are
infecting
me and causing the fevers.
I know my body.
My main oncologist has been on vacation in Greece for a
month.
I think he will be back today.
But I still think I will have to go back
to the urologist for some more
surgery.
I'm exhausted and in pain from
the fevers and stones and stents.
9th Aug 2010
Been having severe pain near my left kidney.
Went to M D Anderson
today
for visit and then to the new urologist.
He did an ultra sound says kidneys look good.
Thinks I need to see a "gut" doctor.
Got a stronger pain killer.
Hope Mr. Meso is not raging a war on inside me!!
^j^
10th Aug 2010
Pardon the spelling.
I'm wiped out.
I have an unknown infection, where I've been on two
antibiotics at
the same time and have now switched to another one.
Yes, I have dehydration, malabsorption, etc etc.
Magnesium
level got to .05 Friday and as Michele says that is very dangerous.
Causes permanent heart damage.
Wanted me in
hospital, but I begged for ER.
I'm in the hospital every two to three days due to high fevers,
that they don't
know where they are coming from.
We think from the stents in the ureters
I will have to have these replaced
every three months if I can make it that long,
"put up with the fevers",
take a new antibiotic,
for 10 days and
then go completely off.
In one day the fever shot up to 104.4 after starting the antibiotic.
Suppose to go to
ER, but I just can't stand that any more.
A couple of docs would like to tap the fluid
from my gut to see if I
had infection there.
They see the ascites,
But at
72lbs........................
my stomach sinks back into my butt.
They keep looking for a puffy tummy.
I turn over and ask them
to check behind me for it!!!!!
The doctors are baffled and my main onc.
that I love has been in Greece
all this time.
I'm suppose to be getting fluids
but my schedule shows I'm getting nothing
all week but blood stabs.
So I'm calling the Main
clinic
to see what they think they are going to do.
If I can absorb anything,
then I should be getting my
magnesium
and potassium by IV,
which was the plan. Too many doctors involved.
I do think they are going thru with the TPN
(nutritional feeding).
But there is a danger of infection getting into the blood from infection,
which we have been trying to get rid of.
But I'm starving to death. Meso is NOT active.
Has to do with the
radiation damage to the gut 34 years ago.
I have a colostomy and now the kidneys are giving out.
All I get is "you are complicated",
In the local hospital,
I spent 6 days without seeing a urologist.
REASON!!!!!!!!!!!!!!
Local urologist don't like complicated patients and cancer patients.
They want to see 50
patients a day and then go home to play golf.
So where does that leave me????????????Am I frustrated!
You bet.
ANGRY!
You bet.
Too much money paid out to doctors and hospitals in the
past 24 years.Where's the help!
I can barely put one foot in front of another,
I'm so exhausted from lack of nutrition and running these fevers
constantly.
I'm pissed!
13th Aug 2010
LOL Just want to say that I do drink
constantly.
Ask my hubby.
But due to the constant diarrhea and the
colostomy,
I will never be able to absorb anything.
That is why I weigh 72 lbs
Malabsorption!
Back to not following orders.
I usually do, but today is one of those days
where I'm suppose to go to the
satellite and do blood.
I'm not going, because I'm weak and pissed that they do
not do very many things with my
blood and don't even check the magnesium.
And there is no change since Tuesdays blood work
and all they are going to do is say go to ER!!
Dr. Papa has the ball rolling.
I will see the infectious disease doc tomorrow.
Enter hospital to get built up
over the weekend.
They do blood every 4 hours.
Monday will have the TPN line put in and start
nutrition and pray for no infection
to get in the blood and line.
16th Aug 2010
this so true!!!!!!
But lots of hospitals and doctors don't want to waste
time on
dying people.
I just heard of a case like this today.
They gave me 3 months to live,
14 years ago and
had nothing to offer.
I 'm still here
just an update.
Saw 3 docs last week.
That's all I do is make appointments with docs.
I'm so sick of this!!!!!!
What I think is going on is that the tubes
coming out of my back get in weird positions
in the kidneys and
and cause this pain,
Now I have a YEAST infection
at my central line site and have to go into the hospital
every 3 days to get it dressed.
Need appt with heart doc and endocrinologist.
Thinking that these antibiotics
that I'm on
are causing the yeast.!!!??
Talking with urologist today.
He wants to do a test,
that I have just
had done
I think he is losing his mind or just too busy.
23rd Aug 2010
Quick note,
Too hard to use this PC
Still in hospital. They may have things figured out
Finally got the TPN line sorted.
The docs got my blood pressure screwed up and it was dangerously high
184/110
Think it was from pumping too much liquid through me too quickly.
Had the stents removed
and new ones put in
They were completely covered with crud and blocked up.
The Docs at M D A have good ideas,
but I don't think my Urologist is going to go along with them.
No fever today.
Very weak and sleep a lot.
No pain Meds needed today
15th Sep 2010
Finally have been able to open up my lap top.
To hard to type in bed.
Hopefully I will tell you what has been going on tomorrow.
At this time, I have another different UTI.
Being treated with 4 antibiotics.
Two bags of good
red blood,
fluids and will start TPN at the hospital tonight. Infection is not in stool or blood,
so once all the cultures are back and they decide what to do for me,
I will
be going home.
So tired from no sleep and being probed and poked,
I'm exhausted.
Typing is hard in
bed.
Will try to send what is going on tomorrow
It has been a whirl wind this last week!
But I'm doing O.K.
18th Sep 2010
Would you believe,
I'm still in the hospital?!
My oncologist has hospital rounds this week
so things are getting resolved.
He is very protective of me.
He wanted
two more tests today.
If the tests stay the same, then I can go home.
7days.....
They think the kidney stone is infected and causing the
problem and for sure the stents will be infected.
At least it is not in
my JI line(for TPN).
Going to stay on antibiotics,
hoping we can keep
the UTI
from happening before I get the surgery over with.
Just remember
that this NOT Mr. Meso
!This is radiation damage from 34 yrs,.
24th Sep
2010
I'm in over my head every day with doctor or blood draws.
I'm beat down.
Tomorrow is day surgery to "blast" the
stone and exchange the stents.
Losing blood and TPN is making me have the "heebie jeebies".
We are all hoping
that getting the stone out will solve a lot of problems.
My Creatinine level is very HIGH
and they are having
me do blood work every day.
Kidneys, just trying to quit on me.
This is from radiation damage in 1974. Not Meso!!
1st Oct 2010
just can't figure this out!
I've been on
TPN before and never had this problem.
Just got infections and ended up
with 8 different lines.
The girl who is handling this,
just took over the position from a gal I worked with for
several years.
She is trying,
but....thought maybe it was the brand being different than MDA's.
They had me on
TPN while I was in the
hospital and I had no problem.
Left the Lipids out to see if that was it(BRAND)
I'm worse
today.
Not going to use TPN tonight.
This is getting scary.
She is getting a different agency to supply the TPN.
It is the one I had years ago.
It will take a few days.
That company had heard of this and it was two people,
one
had an allergy to eggs
and the other had an allergy to sulphur.
I am feeling good except for the "heebie jeebies"
Been hooking up to fluids everyday also
and will increase that today.
Also, when I hook up again we are going to
lengthen the time it is infused.
Also taking Bactrim and Depotat ( like Detrol)
Wondering if this is the problem????
20th Oct 2010
Jill just left me a message -
she sounded GREAT,
but was admitted to the ICU last Thursday -
in a regular hospital room now.
She has an infection from the kidney
stints but is feeling better today.
29th Oct 2010
Just spoke to "one" of the doctors regarding
the
pain on the left side.
He ordered an ultra sound and said this may be the problem
and
because of my past history,
they have overlooked the common things.
We were
talking about the urine culture
and I told him they did not do it and
he thought they had and went to look.
They did no urine culture or blood culture
He was headed to ER to chew butt.
I asked how they knew which
antibiotic to give me.
He said they just use a broad spectrum.
I THINK I HAVE A PROBLEM.
FRIENDS!!!!!
I can't stress enough to you to be sure
and check everything they give you, results,
Question
everyone!!
TPN Dr. from MDA called yesterday
to let me know what the fat faecal test showed .
Thought all was cleared up.
NOT SO!!
Two gals from the company supplying the TPN came
and told me they had spoken to the doctor
and he ordered
another malabsorption test.
Life is certainly full of surprises, isn't it.
29th Oct
2010
Not having much luck with beating this kidney problem.
Tues. I had an appt.
with the cancer doctor at the MDA cancer
satellite center.
No pain.
Put me in a room to give me fluids and within an hour,
I was in excruciating pain.
The ER in Clear Lake is just across the parking lot.
They gave me morphine and wheeled me into the ER.
I was
still on the antibiotics,
I either have a different bug or the medicine did not work.
They scheduled me for
surgery the next morning.
That didn't happen after the doc talked with us.
Scheduled for lithotripsy tomorrow (ESWL) of course,
31st Oct 2010
The doctors are getting scared off,
with doing anything with me
The lithotripsy was cancelled.
Then a
gastro was called in regarding
the severe pain on my right side.
Had a
cat-scan, ultra sound and this morning
going to have a to have
a HIDA test.
Now I'm supposed to be on a high fat diet for the faecal fat test,
but they already did it
before I ate the fat.
LOL. There are toooo many people involved with this.
Everyone has a different idea
on how it
should be done.
Finally got some sleep and at 8:30 PM.
they woke me up with a bowl of cereal and milk
and asked
if I wanted it.
I said no, all I wanted to do is SLEEP!!.
That fat test isn't even in the picture
now and
the nurses don't even know it!!
So they are pushing the food.
OH, the pain in my right side is gone this morn.
Interesting!!
I know they are treating me with the
wrong
antibiotic for the kidney infection,
because of the colour of the urine
and the way it feels.
It's not bad, but it
is there!!
I just don't know where to turn at this moment.
Since they didn't do the cultures before they started
the antibiotics,
they don't know what to treat me with.
Signing off for now!
Maybe if I get this test done,
they will let me go home sooner.
I thought I was going to have to wait till Monday for the test.
1st Nov 2010
Oncology doc came and we discussed the meso
spreading and he went and copied some notes for the surgeon.
Surgeon came in and cancelled the surgery!!!??????????
I said are you getting cold feet?
He is repeating the ultra sound this morn
and the HIDA scan tomorrow.
Said my white cell count is good
and liver function is good
and the pain is gone.
Checking to see if the stone went back into the gallbladder!
So no surgery today.!!!!!!
Who Knows!!
Things are moving quickly.
Scan showed blockage in the duct going to the gallbladder.
Need surgery.
Was given 3 choices and none were good.
will have surgery this afternoon
to have the
gall bladder removed.
Just hope Mr. Meso doesn't decide
to spread into more territory.
Can't seem to get a break here.
And still we don't have the kidney problem resolved
3rd Nov 2010
I've had TPN, fluids,
blood, and antibiotics
for a week in the hospital
and I feel great!
Had more testing done
on the gallbladder
over the weekend and again yesterday.
Will have surgery today at 1 pm today.
The doc will try to do it by laparoscopy.
If there are too many adhesion's,
he will abort and do
an open operation.
Hoping and praying that Mr. Meso stays asleep
and doesn't see what's going on
and start to rebel.
But mentally I've accepted that this is just
something that has to be done and better now before I
really have serious problems from the gallbladder.
We are hoping that maybe this will clear up all
the infection in the kidneys.........
but that's a lot of hoping.
13th Nov 2010
Went to the doctor on Thurs about the gall bladder surgery.
all is well..
went to doctor about kidney pain again
yesterday
Got fluids and antibiotic by IV.
Must go to hospital.
Potassium very low.
Can cause heart problems..
Mr. Meso remains quiet
jill
14th
Nov 2010
Nell, My hair is falling out also
I think it is all the antibiotics.
Doctors just don't
have all the answers.
I'm on two blood pressure meds, to heal my heart.
Not wild about taking meds.
I think sometimes they cause more problems.
And you are right about some RX's
saying stay out of the sun.
'yes", but the one I hate is NO ALCOHOL.
I miss my wine.
But things could be a lot worse for me!!
Counting my blessings!!
The ultimate measure is not where he stands
in moments of
comfort and convenience,
but where he stands
at times of challenge and controversy.
21st
Nov. 2001
Hello Everyone. .I am writing
on behalf of Jill and need your help.
She is still in the hospital
and
having major issues with fluid.
She has had yeast in her blood and a TPM
line,
there is some sort of infection.
They have pumped her full of
fluids
and she can barely eat.
She was lucky enough to get down a
smoothie
with a banana but most of the time if she is able
can take
about 4 bites of food
and she is already full due to the fluid.
She is
going to have (pardon the spelling)
a Parasenthesis to drain the fluid
and wants to know WHAT TO EXPECT?
Also wondering if those that have had
this procedure
WAS THERE ANY SEEDING?
This will help Jill so much,
please post asap and if she can she will
read it, or I am planning to call
her tomorrow.
Jill is such a Warrior and she has
been in the hospital for 6 days now
and
hopes to be home for Thanksgiving!
She was in the hospital last year for
Thanksgiving
and let's just all pray she gets to be home this year.
22nd Nov 2010
Going to see urologist tomorrow afternoon
to see about
having the stents inserted again,
instead of thee tubes and bags hanging off my "behind"
I had them re-stitched 3 times and one hurts all the time.
I just
hope the stents will work and the infection will stay away.
Saw
the heart doc this past week, and Internal medicine doc. and my bone
doc.
Busy week.
But I'm doing OK considering.....
23rd Nov 2010
I spoke with
Jill briefly today
and she was glad to say that her doctor was back
at the hospital and was coming to see her.
They took out the TPN but she
still
has fever of around 102 and isn't feeling well at all.
She is frustrated but
remained hopeful that they would do the
parasenthesis
today to relieve the pressure she is feeling.
She is literally lying on her back,
this is the most comfortable
position for her.
24th Nov 2010
Urologist tomorrow
I had 6 medical appointments last week
and one this week.
And now we are headed to friends for Thanksgiving.
I'm so blessed not to be in the hospital.
I feel like a free bird let out of my cage.
I have been out of the hospital for 3 months.
Unbelievable.
Urologist says we will take the tubes
out
and try just the stents again.
Probably be in Dec.
Had a urine culture done and we go
from there,
if all is good..
I hope you all have a blessed holiday!
Jill
14th Dec 2010
Back in Hospital
GGGEEEZZ,
my urine sample turned out to be
infected,
so back on an antibiotic.
Didn't work. so back in
hospital with 3 infections.
They JABBED the universal stents in me.
One went in, the other did not,
Lots of pain.
Now they
found something wrong
with the liver and want to do an MRI.
My nerves
are shot.
Got a very sick cat,
we are trying to save and the meds
do not seem to be working.
Have more Xmas gifts to order on line
Just too much stress!!
I just want to go home!!
14 Dec 2010
Viewing the Ocean and Trees
I can
really relate to the guys
wanting to go down to the beach.
The
water is so soothing and
many thoughts go thru our heads relating to the
sky, water, breezes, etc.
that God had provided for us.
Its a kind
of PEACE
that I can't begin to explain.
But living on the water
has been a blessing for me.
I've always loved the water and many
days
I have sat on my deck and meditated.
Meditation helps me get thru.
Maybe that is what I need to do right now,
to help me thru the drama
going on around me.
Got to go,
they need more of my blood for some
liver test.
15th Dec 2010
Just what Jill needs....
Salligadoolah,
Mitchygaboolah, Bippidy-Boppedy-Boo!
I will be thrilled to accept
any
fairy godmother that comes my way..
MRI showed stones in the bile duct,
so....tomorrow afternoon
they plan on doing surgery,
to remove the
stones.
Regarding the UTI.....
I have what they call the "super bug"
I have become resistant to all but 2 antibiotics.
When these become unusable...
I will have some real serious problems.
The tubes will
always cause the bacteria
and I must learn to live with the infection
and only take antibiotics when it gets real bad.
They can only be given
by IV,
so that involves being in the hospital.
strong
Always seems as if I come
into the hospital
with one thing and
end up having something different.........
but at least it wasn't
cancer!!!!!!!
Which I know they were looking for!!
j^ill
20th Dec 2010
Home for the Holidays
I've made it home again.
Still have
the nephrostomy tubes and stent.
Then they found stones in the bile duct,
so we got those out.
I'm
on a couple different antibiotics,
but doing OK.
I guess I will just
have to learn to live with this problem.
That's what they say.
Peace to all.
12th January 2011
Today I have been talking to Jill on the phone.
Living here in New Zealand
is a bit far to be able to
'hop over the back fence to call on her '
" Which is a shame",
because when I do ring her
I have to figure
out what time it is over there
and sort out the differences
if our daylight saving is "up and running"
or if her one is.
One time when I rang it was after
midnight and I woke them up.
Not such good timing
Anyway Jill was telling me that in May
it will be fifteen years that
she has survived the Mesothelioma
I find this so amazing
As of the 2nd of July 2011,
Jill is at home but has had numerous trips
back and forward to both
her doctor's
and hospital
Jill is still giving out information to us all
through the
Mesothelioma Register
and I would imagine this will go on for as long
as she can physically do so
As I did Jill's story
I added as much as I could
of all that Jill has gone through,
because you should never accept
"There is nothing we can do for you"
"Go home and get your affairs into order" Jill is proof that there is always something
that can be done.
Back to
Kelly and Travis's story
On To My Brother's Story
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