My medical oncologist let me miss a few injections
this weekend so that was VERY nice. Three doses a day are potent but
I was able to get enough energy to make it through.
started back on the schedule Sunday night. I missed the thrice daily
punctures; there were too many areas on MY BODY THAT WERE NOT BLACK &
BLUE. And I was starting to heal - we wouldn't want that, would we?
I don't ever envision that many actors at one time
again. It was awesome. It would have been great to
be a guest there. The part
The Taj Mahal played in their weekend though, was like daycamp for adults.
The actors LOVED the desserts, 5th Dimension, and especially the Kasbah.
Alan and I were in awe over the scope of
desserts [to me, chocolate is a major food group]. It is medicine.
Better than any cancer therapies that have been tried.
Not to mention how the 5th Dimension sounded; it
brought back such memories. When I taught in a
Philadelphia high school, we'd chaperone the senior proms. To their
music. We never expected all these facets to one fundraiser.
The 5th Dimension is Trump's favorite group .
That is all they kept talking about on Sunday.
In fact, they left your casino so late, many overslept and we
had to wake them up to get them to the ballroom for the luncheon.
Cameron, especially was very impressed by the club. SO if they
ever tell me they are coming back [for recreation], you will have to go
and meet them there. I'll tell you first and we'll plan for you to
finally meet them one on one.
It was so touching that your fan club took the time
to collect money for the Foundation. We continue to marvel at how
great people are. All of my drs. were there and they are so motivated to
work on this rarity after seeing the support we got.
The local press did not cover the event; they are a
weird publication. But
there was a horrible bus situation. The press wouldn't cover the luncheon
but somehow they found out how the actors' bus broke down on the way home
?????? We found out about the disaster 2 hours after they had been sitting
there and had trouble getting the company to get them limos or other
transportation back to N.Y.C. [for 5 hours they sat at the rest stop]. We
tried on our own to find them alternate cars and had no luck. What a time
for those poor stars. And the bus company took OUR credit card number that
they had on file, and used THAT instead of their own resources, to find
the alternate transportation back to N.Y. C. Dispute city here. Actually, compared to the house from hell, this is small poe-tah-toes.
This is one count of fraud - unauthorized use of our
credit card. We did NOT give them permission to do this transaction.
The number should have been destroyed after they used it for the
bus round trip [that they charged to the Foundation credit card THREE
weeks in advance of 4-18].
When in reality, they should not charge us for the limos because according
to the contract we were to transport the actors back on a celebrity luxury
bus with bathroom facilities . SO as per the contract , they should refund our original payment.
Well, my forte is big consumer fights. SO I am ready for one with them.
We are still dealing with this snake of a bus company
and haven't seen a credit yet. We are finding the owner
reprehensible to deal with They lied to us that help was on the way
or we would have asked our neighbors to get some cars there and take the
actors all back.
Then the bus company charged us twice for the same
service. This is a second count of fraud ---double
Originally they put through on our credit card, the
round trip fare for the bus and they put it through on March 25. I
knew that we had to pay prior to the date of service but I was surprised
that they charged it so far in advance. We're working on a tight
budget. We asked them to forestall putting in this amount till
then and they refused. IN addition they added in a large tip, which
according to my upbringing in the 1960's, should be after exemplary
service is performed.
Incidentally, we sent letters to this company in
October, 2003, as well as several others, asking that they donate their
services for this event. We have an email from Darren agreeing to do
so and then he went back on his word.
And the always eternal problems - like the room the
actors were brought to right before entering......many of the volunteers
crashed the place and were asking for photos and autographs right before
they went on [and here all along we were worried about the fans!] We
went crazy and had to have them all thrown out.
One lady told her friends to wait beside her and
she'd sneak them into the room where the stars were waiting to come into
the ballroom. Different people's stories helped me piece this
Arts and entertainment can be such a wide spectrum -
- - all the various choices this great country offers are frequented by
different segments of our population. We knew what a popular
vehicle this would be to raise money. But it also means dealing with
a lot of peculiar fans.
30 people said they'd be at the event and didn't show
up and we have to pay for the meals anyway. If they had had the
courtesy to call, we'd have made more money because we'd have cancelled
the meals. People just don't think. Even though they paid for their
tickets in advance, the meal had to come out of that. SO it was less
profit when they didn't show or call.
EBay opens it to the country so we will
let you know how much they sell for. We are astounded.
The EBay Auction is one way to maximize the
contribution. We have had wonderful results using EBay in the past because
it reaches an international audience.
Naw, the neck feels the same. SOmedays it is so
tight, the skin feels like it will burst. And then other times it is
The bus co. is not begging but continues to lie, like
a rug. First it was to be a credit. NOPE! Then it was to be a
check fed-ex ed to us. NOPE! Now they are mailing a check.
My ducks are getting lined up. They won't know what hit them if they
don't satisfy me quickly.
SO tonight I sent my letters to the attorney generals
offices. Tomorrow we go to the police station to report credit card
I will send out 5 letters a day on the internet to
transportation and consumer and government agencies. It is easy with
copy and paste and send. Over the next 4 months the bad boys
will be getting calls, staggered. It will be retribution to know
they can't get rid of me.
Well, today I implemented my 'fighting back' plan
with the bus company.
Till today it was child's play. God gave me a purpose so I must carry it off. I told Alan, as I have for the last 2 years, if I stop working on these issues there is no reason for her to keep me here on earth, right? By the end of the week their heads will be spinning like in the Exorcist movie.
Alan's main concern, however, is for me. These events
Sunday really upset me, which is the last thing I need on top of cancer
treatments. These stress the immune system severely and I don't need
further stress to impede my health. I worked very hard on
planning for this event last Sunday and tried to make everything
My sister and I remember my mother's last weeks
in 1972 as if it were yesterday. She needed 100 pints of blood
before she died; all from over radiation [the burns hit a blood vessel].
But eventually, it fades, as you know - you don't
forget but your mind tilts other memories forward, thank goodness, better
I get scanned the 10th of May and we'll see if it is
helping keep the tumors at bay.
from shot to shot. They tired me out severely and sometimes I feel
like I am in a big blur. SO I try to keep pushing.
We are kind of tied to this area for now because of the injections.
We don't feel like we need a vacation away since we live in a resort.
We just want to take advantage of some of the great activities here for a
while. It has been hard to get away from the fax, email, phone, and mail.
I'd be thrilled to have the time to clean a closet or take a walk. We did
that today - we went to the Ocean City boardwalk.
Today the credit card company said they would not continue the dispute -
we paid for a service and got it, so they are clueless and we were fuming.
I lost it and told the woman everyone at Advanta is
ignorant and stupid.
Only because 2 law firms want to take this case pro bono. I need to speak to someone in the C.E.O.'s office next.They have an 800 fax number so every few hours I send a 20 page fax [hahaaa] and hope to find someone who is literate.
That's the Barbara we know and love..............and
the bus co. will love to hate!
Go get em.
You said it perfectly. It is like walking thru
your TV screen, I feel. The first time we went to one of these
luncheons, my feet were above the ground for days.
The I.V.F. cycle was up today; it sold for $4350.00.
Totally incredible. What an item! What a dr. to donate it! We
have a few dozen items left over and a Lunch with Rebecca Budig sold
tonight on EBay for $3425.00! But it
helps the Foundation tremendously - we certainly found a wonderful venue.
SO much easier than the big luncheon.
You are a gem - truly the best friends ever.
All you did last Sunday, with a constant smile, and offering help out of
this credit card mess.
Now here's the big laugh with the bus situation.
When I called to talk to someone at Advanta [the credit card company] they
said to put Alan on the line; THEY WERE NOT AUTHORIZED TO SPEAK WITH ME
SINCE MY NAME WASN'T FIRST ON THE ACCOUNT.
THEY COULD NOT TALK TO ME BUT THEY SURE TOOK THE CREDIT CARD TRANSACTION FROM A TOTAL STRANGER LAST SUN. NIGHT, that Alan did not authorize, RIGHT??????
What I used to say when I taught and had to miss a
day is "Will the kids miss this day in 20 years from now?"
"Will it make a difference in their education?" But most
of the ones we had at Frankford H.S. didn't graduate anyway.
Monday I will have another
combination PET / Cat Scan to see how I’m “doing.”
Without these modern miracle tests, I don’t ever really know how I’m
“doing,” until the drs. tell me. High anxiety time.
How I “feel” never seems to have any correlation with how
When I was initially
diagnosed with cancer, I had never felt better in my life. But, an army of
medical doctors was telling me I was in deep trouble, health wise, and I
had to take some pretty drastic action ASAP. Since then, the worst I have
felt was when after the surgery across my neck hemorrhaged and the
radiation had burned my esophagus so badly I couldn’t eat or talk. The
partial lung removal a year ago wasn't as long an operation [4 versus 9
hours]. All these left me different physically than I was before; so many
different side affects.
Alan told me you called but my voice has been shot
most of the time - if it is a side affect of the drug, but who cares
at this point since other issues are so major. So I do email.
..about 4-5 a day ---I am very tired.
About 60 come in each day. I am so behind. It just really hurts to strain and talk. But the bigger picture is if this torture is going to work. We go for scans on Monday.
Here's another of my consumer sagas. When I picked up my new
glasses, lst night, as soon as I put them on, I knew something was
severely wrong. Every image was distorted, almost tall and narrow.
I could not keep the lenses on without feeling ill.
The optometrist examined my older pair and found the prescription the
ophthalmologist's office gave me had a difference from my old
prescription. I know when I was there for the exam there was 'no
change.' They compared the numbers and said the problem was with the
left eye . They feel someone left off a 'one' and that changed the entire
correction to one that made it so I couldn't see.
The glasses will have to be re-made.
I faxed the dr. and asked him to explain how this happened.
Because of someone's carelessness in transcribing and not checking their
work over, I have endured inconvenience from the added travel back and
forth and someone has to suffer a financial loss due to the glasses
having to be fabricated again.I am not going back to him. He messed
up Alan's glasses last year [remember-he added a prism that should not
have been there]. I hate buying things. He is
too busy making TV commercials and not checking his work.
Good news. The compassionate use committee is approving another
drug for me - now it goes to the FDA.
Today's mail surprised us so much that we sat
in disbelief. One of the main actors, Cameron Mathison, on
"All My Children" sent us an envelop filled with checks that one
of the walk-on actors took it upon himself to collect...all for thymic
research. This wonderfully dedicated person really went to bat
for the Foundation. It is very impressive that there are people like
this that give help and support. He did it anonymously but some of
the larger checks have addresses so we can send proper thanks.
Actually, depending on how my scans come out Monday,
we may go up to A.B.C. in a week or so.
Mainly to visit Cameron and a few others. There is a Pre-Daytime
Emmy party that one of the agents throws and she put our names on the
list. But, first things first.
This will carry me into Monday's scans with a nice
aura of hope. They just added some abdominal scans to the list
because that whole area has been feeling a lot of discomfort the last few
days. My skin feels too tight there as if my insides are bulging
out. Now what is this - reaction to the drug, liver damage from it,
or hopefully a local reaction to the needles.
Monday I go into the scanner about 9:30 for
about an hour so think of me in a safe, protective aura if you have time.
We pray the Octreotide has kept the tumors in my chest stable and
they have not grown since the scans 8 weeks ago. It would
be good news to have held them back.
Yes we were the spearheads behind the event. We
can't believe we did so much work either - people volunteered to
help but...well you know what happens. Since no trials or
research have been done on this type of cancer [it is so rare and the
patient base is so small], Alan and I felt that my only chances for
survival were to take matters into our own hands. No one else would
- it is very scary to be all alone - but through the Foundation, we have
been contacted by dozens of others and at least we [and our drs.] can help
Thank you so much for remembering about today and the prays, especially.
It was very touching [as people we have known forever did not even call to
wish me luck] - but we are all in tune with each other and know what the
Another day, another set of scans. Now the wait begins. The
test is always tough - drinking 2 bottles of barium, the TWO radioactive
injections which require the needle staying in my arm 2 and a half hours,
and the strapping down on the scanning table. Today I had a tickle
in my throat at the beginning and couldn't stop coughing. It has
been this way each day since the lung surgery last May. They didn't
come in the room, even as I called them. I needed water and did not
get it. It was a bad scene. I took benedryl in advance as a
preventative, but it didn't quite do the job.You lay there in a daze, if
you're lucky to be able to immerse yourself into a Zen state. At one
point I saw the blue protective aura everyone was sending me. That was so
The radiologists I know are not there and so I can not get information
from the new ones. They are super busy. Because I am there so
much, the old ones used to say I am part of 'the family' there.
What a distinction I could do without. Anyway, if there is no news
tomorrow, we will call the other facility where the old ones I know are
and see if they can get me some news. I tried my medical oncologist
at Penn; she was out today [her little girl had adenoid surgery].
That doesn't help. I called my radiation oncologist and he said he'd
see what he can do. Never heard. I called my endocrinologist,
Dr. Check - his nurse tried with no luck.
It drives us crazy...the not knowing. The tech who did the PET
scans gave us the films that we will take to Phila. so
my set of drs. there can do some interpretations for us and put us on the
correct path. Deja vu. The CT scans
were not ready. Anyway, we laid them out next to the last ones to
see if we can figure out anything. All I know is the tumors are
still there; we can not tell anything about their size or the intensity of
My radiation oncologist did call today and he said he said
he got the report and it looked good. I guess compared to what they expect
in our cases, it is good. A
couple of the tumors in the chest are the same size or a bit smaller so
that could mean the Octreotide is keeping them at bay. The
brightness/intensity also was a little less so that is encouraging.
The one negative finding was some paratracheal lymph nodes looking
brighter and larger than the last scan.
Scoreboard after scoreboard. I like your description
- keeping it at arm's length sure is better than at our throats [what
irony is there in that since that is where it all started].
You have to give a plug on one of these Friday
nights, for those wonderful researchers at Novartis - without their
intelligence and persistence, you and I wouldn't be the recipients of
these new drugs. Because of them, we get the privilege of you being able
to say our names each week. It is so ironic we are both receiving Novartis
Your good thoughts are
treasured by my and are one of the forces responsible for this
miracle this week -
the visualizations, the encouragement, and the brocco sprouts [which I put
in mashed potatoes the other night and in macaroni tonight].
There are angels out there
looking out for us. I am thankful for that.
So to answer your question, the injections will be a
permanent fixture daily since they don't want to tamper with something
that may be helping and they don't get any easier...just harder [I am out
of non black and blue skin to put them in and the side affects are
accumulative]. If I stop it, they are afraid their growth will
continue. So it is a catch 22 - and kind of life and death. Can't
gamble since they know so little about this.
No pain or fear. Sounds good to me.
That is what I pray for too. Somedays
more than others. I have had some coughing problems that started
about the this time last year after the lung surgery. The choking
can be bad and unrelenting at times. I think that all the radiation
plus the 2 surgeries and now the drugs I have received to fight the big C
have weakened chest area and the ole immune system. And I have
always been very chemically sensitive but now I am allergic to
whatever it is that comes near me. The dr. told me today he sees
nothing in all the films that would indicate why I am coughing.
Today was spent with my local radiation oncologist. He said he'd
be interested in hearing the opinion from the doctors in Philadelphia, on the
report from Monday. I guess compared to what they know about this
type of cancer and expect, we just have to pool all their
intellectual resources and try to make the best decisions possible.
But I am back to the reality that every cancer is a killer and
even though I am not cancer -free yet, I, am still here and way ahead of
Thank you. I need all the luck I can get. My dr. today told me he
believes in energy and all the forces in nature for healing. He is
always telling me how it is a multi-faceted approach to getting well,
not just his technology. He was listed in Phila. Magazine's top drs.
under radiation oncology.
But even though he is the best, I still maintain that the list is
MEANINGLESS. Dr. Brady was not in it. Dr. Kaiser was.
Also my neurologist from here was list. But that horrible oncologist
in Somers Point was on the list. The one from last March .
You know, all a dr. has to do is get people [patients and friends] to send
in an email form and it is whoever gets the most in, gets the nomination.
we feel relieved enough to make the trip up to N.Y.C. on Thursday. And
what a coincidence that you will be in N.Y. the same day.
Maybe we can somehow meet. The party is in the
Bowery at the "Boulevard." We noticed on the invitation,
that we could make reservations for dinner, first. If you want to
try for that, we can call for reservations. Maybe some of the actors
will be having dinner too? Would that be a kick or what. What
are we thinking at our age?
neighbor's daughter had a tumor taken out of her neck by a local yokel dr.
. Since the surgery it 'sweats.' SO the dr. said to put anti-perspirant
I know how you feel about recovering in between. These shots are
getting to be cumulative and some days I just lay around in a daze.
Once in a while I just treat myself to only 2 per day instead of 3.
Especially since I have some new side affects. I know, I know - it
is playing with fire, but at times I need a break from it all.
For the last few weeks, my abdomen feels very
tight from the inside out, bloated, or like bound in a girdle [for lack of
better words]. It is not as noticeable if I stand or lay down but
the discomfort is still present.
At first I thought this discomfort could be a local
reaction to the needles [I try to only inject one side of the abdomen once
a day and for the other 2 Octreotide injections, I use a thigh or arm.
From the very beginning, the localized inflammation has been very
apparent...a 2 to 3 inch diameter of red, raised, painful skin. This
lasts about an hour. Afterwards, it can be hard and lumpy.
Sometimes it is lumpy and / or black and blue for days afterwards.
And after the injections on the upper arms, there is pain under the
armpit for several days. In fact, so as not to get any false
positives on the scans last Monday [5-10], I stopped using the arms
for injections in the middle of the week before. Then when
I felt the discomfort in my abdomen, I decided not to use the abdomen
either until after the scans. That did not leave me too many
places to rotate the doses and I was really miserable using the same thigh
and rear over and over.
Since I ran out of sites, instead of having them every 8 hours,
for a few days, I tried every 12 hours [2 times per day] to see if the
abdomen felt any better. There may have been a slight to mild improvement.
It makes a bit of a difference feeling more comfortable in my body.
If I extrapolate, the same reaction I had under my arms, could be
at the abdominal sites.
A long day up in Philadelphia. Dr. Brady is
pleased about the tumor size but there is an abominable abdominal problem
brewing. On the January CT scan the gall bladder is a normal
size. Then, now, after 2 months on the Octreotide, it is enlarged on
last week's scan. This explains why I have so much discomfort. I
knew it wasn't normal what I was feeling. Dr. Evans said I
should see a g.i. dr. If it gets too large, it has to be removed.
You know my terror when I heard this. They do say the drug can affect the
The medicine is starting to work but do I need more
pain and surgery if I continue. It is terrible and cruel and hurt like
hell to hear these words. I am only doing 2 injections today. I went on
As much as we yearn for a bit of normalcy [even a year would
be nice], probably we will never get it and yet other patients with other
types of cancer get a year, 5, 10 ,14...jealousy...
My cough is all day but at night, most of the time, I can
sleep a few hours at a time [with lots of pillows]. Sometimes a
cough wakes me up. Lifesavers help in between the cough syrup but they
changed the old, traditional flavors. Did you know that. Awful
watermelon and tart blackberry.
We went up to see her [Dr. Tracey Evans at H.U.P. - Presbyterian: she's
the one prescribing the Octreotide] and she looked at the films from the
January, 2004 CT scan and then the recent CT scan from last
Monday, May 10th. I also had some blood work yesterday - most tests
are normal [not the T.S.H. - the Octreotide has been toying with that
We told them you were our one and only G.I. guy.
They also then suggested an ultrasound of the gall bladder so I
suppose I'd need a script to take to A.M.I. ---unless you can think of
anything else you'd need me to have.
She wants an ultrasound but wouldn't write the script
since that is not her area [I thought that all kind of odd; well,
annoying, since she prescribed the drug].
DO you get that all the time ---"you look
healthy and so good" blah blah blah. People say I am the
healthiest LOOKING sick person they know. It really rankles me because the
ravaging is going on inside and what do people expect me to look like
anyway. If they say it once, fine! But when they stand there for 10
minutes saying how good I look it is as if they are saying, "you look
good so therefore nothing is wrong with you." It kind of
minimizes what we have.
you are one of the few that understands. I have been getting very
annoyed at people's reaction. They minimize the entire surgery by
saying stupid things like it can be done differently than years ago.
Well first of all, I had 2 torturous surgeries and am scared to death of
any more, especially now being more immunosurpressed than I ever was
before from this drug. SO it isn't simple in any way now to have any
procedure. People don't get it. there is also the problem of
incisions because they can spread the out-of-control al quada more
I think I will try to embarrass the al quaeda and sick pitbulls after
them and point at them and make them parade naked in my body.
They do say the drug can affect the gall bladder in
68% of those taking it.
As for people, we know TWO poor women now that
had gall bladder surgery. One had it a month ago and has been back
in the hospital 2 times for repeat surgery [IN ONE MONTH!]. The
other lady had it several months ago and hers opened up somewhere inside.
Both seem to have oozing infections. AND THEY WERE HEALTHY TO START
WITH! Isn't that a kicker. SO for those twits that minimize the
seriousness of the surgery, they obviously have not had anything
like it or know anyone.
Except I have one 'friend' who has nothing wrong with
her and she is dying to have a CT/PET scan to see if she has any
cancer cells. She is a wannabee. Can you imagine, she
actually wants something to be wrong with her????????????????
Yesterday someone stopped me and said how white my
legs looked. I wished she had kept her mouth shut; I never had a
comment like this before - I have always been medium complexion and tan
easily though we hadn't been in the sun yet this year. I told ALan
and we think the medicine has done something because my skin looks a
sickly white color. Something else to check out. Don't we know the
stupidest people in creation.
The imaging place I go to always tells me to drink a
lot afterwards to flush out the barium. They give Alan orders to take me
out to breakfast.
We sit on our own beach, with Longport people, away from that old crowd. I
hope that doesn't sound snobbish. We outgrew those people
---most did NOT support the Foundation at all. Only 4 couples from
the old crowd came 4-18. We need to spend time with those that
try to boost our morale now at this time.
Our beach has showers and bathrooms. Art and Marcie Freiberg came
to sit with us Sat. On Sun. we sat with some neighbors.
Sometimes Sherry and Neal come to sit with us. Bonnie and Rich came last
year. It is just so pleasant.
The tech told us he didn't see any stones as he was doing the test. There
are substances [like bile salts, etc.] in the gall bladder that don't
belong, probably because it is not emptying properly...the drug causes
that. It is some ‘sludge.’ That
is actually a medical term - it refers to an excess of bile, salts,
crystals, etc. that gets stuck in the gall bladder. Octreotide
causes it to form. The Octreotide works on a muscle in the gall
bladder, not allowing it to open so the sludge doesn't leave and builds
up. Eventually it can make stones. Maybe the discomfort I feel is a
combination of the entire abdominal area. The radiologist suggested
that too, the other day.
Tomorrow is that free brunch we go to every year.
Last year I couldn't stay because I had just had the lung operation and
wasn't doing great. The year before was when my neck was slit and
the radiation had been going on for a month so then I couldn't talk or
eat. SO this year should be an improvement. This is the
one I always write you about - the one where the Mummer's play and dance,
he hires a Jack and Jill truck, and he always has surprises.
They haven't much [if any]
experience giving the drug to patients like me. As for 'after
treatment' ---whew ---I only wish I could look that far ahead. The
way we understood this I am on this indefinitely. It doesn't get rid
of cancer, only helps slow down its growth.
At least you know it is all benign. I would
love to hear those words and am losing patience when we don't. Having
tests and waiting to see if 'it' has come back is sheer hell and a
constant. Alan and I spoke with this wonderful professional from Gilda's
since in over 2 years there has been absolutely no reprieve. If it
is something that wouldn't be incurable and fatal we could handle it
a whole lot better. Those are the only words drs. have used with us.
They just don't have the heart to handle this subject
with us. They never answer our questions along those lines. We have
had to read the brutal truth in their reports and in medical articles.
The main adjectives are that the type I have has "a poor
prognosis," "it is a very aggressive and fast growing
Life is very different now. I read your email
and see how different our lives are. You are lucky to have the
ability to change your care. Nothing more Alan and I can do
except find our own researcher so no sense thinking it could
be any other way at this point.
We took a short ride the other evening after dinner
on ALan's motorcycle, to go get soft ice cream at a custard stand out on
Ocean Heights Road, Lloyds. I totally enjoyed it - it felt like a date.
With shopping, I go thru phases; I don't want to buy
anything a lot of times. It is hard to explain - I guess it is
a depressed feeling that 'why buy - I may not get to use it.' Before
each surgery that feeling was very strong and once in a while it
re-occurs. Material things just don't do it for me any more.
Lost my courage - and went back to 3 injections a
day. But about once a week, I give myself a treat and just do two.
I started to feel terror - what if that one per day costs me my life by
not keeping the bastards in check.
One story - person with gall...this idiot behind me
wanted my attention so started tapping me on the arm. I spun around
and yelped for him to stop. Annoying son of a bitch - every inch on my arm
and legs is black and blue and painful from the shots I told him, which I
shouldn't have had to. I just hate when people invade my space, my
personal space on my body. People just don't think when they are
around people that are getting medical treatments. I really almost hauled
off and hit him. A few people - and I abhor this normally - have a habit
of hitting your arm as they talk to you. Do you know the kind I
mean. So now I just back up and keep backing up and if they don't
get the hint, I let them know not to touch me. Some of them can make you
motion sick from the aftershocks of their prods, let alone the pain of
their hands hitting your skin.
Unlike my friends who have had lymphomas or
Hodgkin's, my drs. have never used any words with me that have to do with
prognosis or nature of what Thymic carcinoma really is. My
friends often say their drs. tell them that whatever way their cancer
takes a turn, they have a treatment for. NO one has ever said that to me;
I feel really left out. So to answer your question, the treatment
they are trying now, is a shot in the dark. They really have no idea
what works or what to do. There is no patient base to draw from. It
is very harsh to read that, I know.
they did not test for lyme. They forgot.
And I threw a fit. They took 9 tubes of blood and yesterday told us
they forgot to do one test---the one the dr. sent him over for in the
first place. I told them to find his tube as quickly as possible
before it is thrown out and do the test. Luckily they found it
because if not I was going to write a nasty letter. I still may. My
energy is not what it used to be.
We were at HUP today to see the thoracic surgeon's - the great Dr. Kaiser - it has been a year since my lung surgery and he was pleased to see the CT and PET scans of my chest tumors responding to the Octreotide. We were pleased that he was pleased and didn't want to do more surgery. Whew. You never know when you go into their offices what they will suggest.
My sister drove down and met us so that was very nice
to have the moral support as well. Those visits take a toll.
What happened with Laureann.
I hope she got relief and was able to go home. This is the problem
with cancer therapies ---they are so strong and toxic that they cause all
kinds of distress for years to come. ANd I am talking serious
problems, like a neighbor had lymphoma and got chemo and then needed heart
surgery from the damage the drugs did. It all stinks.
I went thru the ultrasound series of the upper
abdomen, pancreas, gall bladder, etc. They didn't see any
stones. He also thinks it is affecting my intestine by making
it sluggish; I am sure he is right [the defunct thyroid does that too].
My synthroid is not perfectly adjusted yet.
I forgot to tell you that the other day I called the
hospital to get Alan’s blood tests and the girl was looking it up in the
computer and I heard a man in the background say his name. I figured it
didn't happen, for real.
When we got over to the hospital, the man was the one
who brought out the report and he said he was faxing the results to our
dr. at the same time we called. Anyway, when I called to say that
one test is missing, he said the instrument was broken and the technician
was there to fix it. Then we heard a scream. Something fell and hit
the tech on the head. Will the test ever get done?
We went for Alan's test result today, the missing
one. It wasn't in the envelop - but a repeat of one we already had.
We marched up to the lab director's office and I nearly exploded at the
incompetence. We got the result! And the phlebotomist was
already reprimanded! But I gave them more to throw at her -
she didn't label Alan's tubes for 15 minutes and kept wandering out of the
room, leaving his unlabeled blood on the table.