appetite is better this week. The coughing is a smidge better at times.
But something else happened on Tuesday ---I felt a twinge of my trigeminal
neuralgia pain as I ate. I am upping the neurotin so maybe with luck I
can head this off at the pass. I don't enjoy the neurotin [I become a
zombie] but the pain of the t.g.n. is the worst ever. I hadn't finished
winding down the dosage from last year's episode [remember how excruciating it
was in November around Thanksgiving]. I was down to 2 pills a day [at
its worst I took 12 pills a day]. Now I am up to 6. Have to
titrate up slowly.Crap.
you for the good luck with the TGN. At least with the neurotin started
early and plentiful, I am not any worse and I hope to keep it this way.
These shocks I can handle. I am sleeping a lot though because I am up to 7
pills a day. We don't know if this is from the new drug or
just took some chocolate cake to Dolores and Arthur [he is the one with
Alzheimer’s]. Since we knew him before, this is just horrible.
Your medical explanation of the brain made sense. That was very poetic,
dying by inches. Arthur seemed a hair more aware at times last night.
Most of the time he sat dozing or staring. The only word he'd say is
"yes." Once Dolores brought out his baby picture and we were
all cooing and he looked up and gave a huge smile. I asked where he went to
high school and Dolores said Central. I asked Arthur if he knew our
neighbor and he said No. For three years all I have heard him say is yes.
He will never improve but those few glimmers were a help to us all not being
can drink coffee and I usually do have a cup in the morning since all this
began [or I'd never wake up]. Every once in a while, good properties are
tooted about it. Or I'll have Pepsi or tea. I am up to 8 pills per
day and thank God, it hasn't gotten any worse; I could live with this.
But I am so in a fog - in a second, I could be asleep.
did try to take a walk to the MAC machine today. And after a decent
rest, I cleaned a few windows. That wore me out. They get very
opaque here from the salt air spray [wind and rain makes it worse].
for side affects from the mefipristone, I am not as queasy, and the sweats are
the same. My left lower back is still painful at times and the
pharmacist said all these medications can cause damage. I forgot.
Many people I know that had chemo have permanent nerve or muscle damage.
they can give you causes something. Who knows ? maybe the drug caused
the tgn to come back.
are right about the pharmaceutical companies - they keep lowering the ranges
of normal for so many constituents in our blood so more people have to take
drugs they make a mint on. For example, blood pressure meds but notably
the statins,like lipotor and mevacor [it seems as if every one needs to take
them for some reason if the pharmaceutical companies had their way].
They have sold a bill of goods to every country in the world that in Europe
they are thinking of putting statins in the water. England has an
just enjoyed a wonderful afternoon with Jerry Check
yesterday. We made him one of the doctors on our board; we were invited
to his new house in Elkins Park [well it was built in the 1890's]. Built
for a Widener. By the architect Trumbower [sp.]. He's been there a
month and he has dinosaur eggs, mummy sarcophagi, ancient ivory
carvings, and so much more...... like a museum. The fixtures
and furniture are intricate carved masterpieces. Some signed, some
made in France, or far far back in time. Forgot to take a
picture. The house is magnificent and they gave us the royal tour.
The pool and area around it were like out of a magazine.
scans in THREE weeks will tell if the drug is working. This will be very
telling for all of our endeavors, so it makes me even more nervous than usual.
I am taking all the help I can get. A woman I know that owns Seashore
Healing Arts [yoga, reiki, massages, etc.] told us about a Buddhist monk,
Guyana Cealo. He will be in Ocean City August 24 to 28. He has a
record of healings. She is going to schedule me for 15 minutes.
motorcycled to Padre Pia today. But they weren't open to buy me a relic.
twisted his ankle on the way out of his zoning board meeting at city hall, the
other night. An eager beaver turned off the lights and he was thrust into
the dark and missed a step. It is so very swollen and
multi-colored, he can hardly walk. He didn't feel he needed a dr. - you
men! Yesterday though, so many people that we sit with on the beach that
looked at it said to him that it looked bad so I got the primary on the cell
phone [it was 3:30], he said to come over, gave us a script for the x-ray, I
called the imaging center and they said we could come until 4:30. We got
there by 4:00 and by 4:10 the radiologists [one that reads my PET] came out
and said nothing was broken. Whew.
was the session with the Buddhist monk from Japan. We sat with him for
15 minutes; we had a translator. He told us several things, one of which
was that 'the cancer is in the past and I should think of things I want to do
in the future...' He specified it must be things I do for myself and not
other people. He held my neck, near the point of the surgery [it didn't hurt]
and it was a blessings of sorts. He had on this red robe [over one
shoulder] and sat yoga-style on a gold trimmed fabric on the bed. He had
some words for Alan too. ANd then he gave us some holy water to drink [
a tiny amount each day].
was hard getting up 2 flights of steps to see him. Because last night
Alan twisted his ankle on the way out of his zoning board meeting. It is
so very swollen and multi-colored, he can hardly walk. He is pretty sure it
isn't broken and doesn't want to go to the dr. but we will give it a day or
so. He needed a cane this morning but we don't have one; we used the rod
from the Bissell-type vacuum. So I don't know about going to the gym or
getting on the beach. Definitely no motorcycle.
know so well about not being able to wear a bra - my neck surgery preclude one
because the straps hurt where the muscle was removed; then the radiation burnt
the whole area so a bra was impossible; then I had a breast cyst and couldn't
wear one; and the shingles came next across my back and front so again a bra
was out; and finally we had the lung stitchery right where the bra would sit.
are lucky Curel works externally; I need an 'internal' curel in my throat,
trachea and esophagus.
is still tres grand, and the colors are quite dark. The ice should
only be on 20 minutes of each hour. we made it to the beach by Alan
pushing our cart we use to haul the chairs on as a walker. The tough
part was the sand. That is a task when you just get on the beach since
it is so deep and soft. Down by the water it is packed....
yes - glad my appetite came back for it. Tonight the builder that added
on our patio invited us and his other customers to a dinner at a nearby
country club. It was really nice and we met people who live around
the corner from us, that used him too. We never saw them before yet we
walk by their house and we sit on the same beach. It was so funny to see
a room full of people who used this builder and everyone was smiling. We
have never talked to any other builder we ever had after the job was
done. In fact we had to sue one of them because over a 100 things were
wrong. Loong story. Anyway, getting back to the topic at hand, the food
was delicious [prime rib among many choices] but for dessert everyone got
their own individual chocolate cake. A little round job coated with chocolate
icing ---a nice dense chocolaty mixture.
appetite was good until this couple sat down next to us at the table [they
held 10 people]. I lost appetite when man next to me talked into my food
and spit and I felt it on my arm. I had half eaten my prime rib and he sat
down, leaned close to me so he could talk to Alan on my other side and then
his head lowered so it was almost on my plate. His breath was so bad
that right there I stopped eating. I got up to go get a coke at the bar; I
should have picked something stronger. Alan saw how it all played out
and wanted to get me a new piece of meat but that was not necessary.
told ALan if my scans in 2 weeks came out good, I have another idea for a
fundraiser [when I said the word 'idea', you should have seen his face].
We'll see - but I'd have to check with my soap opera guys first to see if they
cough is full time; it is odd ---lifesavers control it for a while.
Sometimes I can sleep thru the night - no rhyme or reason. If I am in
the car the and vent blows on me, it starts it up. All indications are
it is asthma related. Outside, the blowing wind starts it up, too.
The inhaler isn't so good in that it dries up the back of my throat so much
that I get a dry tickle - - - can't win. So I don't use it as often as they
still managed to make it to the charity event Friday night at the Tropicana
casino, even though his ankle was hughmongous. It was for Gilda's House.
It was the dessert party and cast party from their Joy Behar and Robert Klein
show. They had chocolate fondue and crepes, my 2 favorites. I
stuffed myself silly. There were other things too.
did a search and quite a bit of research on Ester - C and Transfer Factor
Plus. We have to be so careful what I take. Vitamins can also fuel
cancer cells and we really would rather starve them.
the main ingredient in this is not what you'd think by the name. It is
something that went around a few years ago called colostrum. A woman was
hawking it on the beach and it was almost like an Amway sales pitch. And
quite high pressure. She would go over to one person and say it would
help their depression and then you'd hear her at another group saying how it
healed heart disease or cancer.
the product didn't do good under the colostrum label so now they have tons of
it to get rid of and have re-named it and try to make it sound scientific.
is made from bovine substrates and it is not regulated well so you can get
contaminated supplies. Was this woman in Delaware selling the
supplement? Just curious.
for the good wishes for Alan; it is just a matter of time till the rainbow of
colors disappears and the swelling deflates. It doesn't look like a real foot.
till you hear this. Word has it that this local g.i. doctor had a patient
recently who died because the settings were changed on his instruments by his
staff. And they didn't tell him. Maybe it was the polyp - burning
apparatus. The patient died after receiving more burns than
acceptable. I called this lady who is a friend of a friend of mine - she works
at the conservative shuuuueeellll. I asked the name of the dr. This bitch says
"I am not at liberty to say." Seems the dr. belongs there.
what are the values of Judaism. They should be service and helping
others. I told her I need a colonoscopy and don't want to go to him
unwittingly and it could save my life to know. There is no greater
service than that. She refused with another "I am not at liberty to
say." Major hypocrite, besides being a walking bastard. SO I got
off quickly or I would have exploded at her but not before I said, "I
will find out who it is, you can be sure."
the dessert party, one lady said she heard of the story and knows the man who
was killed by the dr. She called today and shocked me with the doctor's
name, JOEL KRACHMAN. It is not said 'crackman' as then it would be a
joke ---a g.i. dr. who looked in people's cracks [pardonnez-moi ici] called
crack man. It is said like 'kratch' - man.
spoke to the original person today that told me about this dr. SO I said
I don't appreciate it when women our age play teenager games and of
course I was referring to her friend who I called to find out the name of this
jerk dr. She said, "she'll lose her job."
said she already told you and didn't say not to say anything and when you told
me you didn't say not to pass it on. Then I pulled out my trump card.
Whatever that means since I don't play cards. I said good Jews follow
the values they have been taught. And the main one is service to
others; and what greater service is there than saving the lives of others.
Your friend Ethel [this immature merde professes to be the perfect
conservative ] could have done that by passing on the name.
fireworks were lovely but we had to move back from Atlantic [sparks were
landing on our skin, roofs, cars, etc. My lemon meringue pie is my
grandmother's recipe and I make it once in a blue moon.
thinning of hair I can relate to. I find 60 on my pillow most mornings.
Some of my drs. say it could be the need to better regulate my thyroid
hormone. They burnt my thyroid with the radiation.
next scans are September 14th and we will see if the new drug is working.
This will be very telling for all of our endeavors, so it makes me even more
nervous than usual. Think of me on September 14th, if you have time.
welcome to my world of the last 2 and a half years. Getting a disease
like this you have to expect to spend most days handling the paper work.
SO the g.i. murderer story is now corroborated; I heard it from 2 sources. The poor man went in for a check up and was killed. Terrible.
here is the coup of coups ---I stopped at the police station today and the
captain I know was back and said that Constantini was arrested on domestic
abuse [he beat up a wife]. Well now the plot thickens. If the wife
wanted, a member of the domestic violence team was called to counsel her.
I will find out Thursday night at our monthly meeting. Would it be too
much if one of the team spoke to her and reported the details. That is
what we do at our meetings; discuss the various cases.
Constantini is sinking lower and lower until he goes off the screen. I
heard a story yesterday of an older neighbor who couldn't breathe and she went
to the closest pulmonologist's office. You get only one guess,
Anyway, a story on the recent episode, someone told me, appeared in
the daily newspaper so now I am trying to track that down. An article
---short, but nevertheless, an article. He must be cringing in his short
girls at the window were horrible to her. They said she could have an
appointment in a month. Ann said, "I can't breathe now: forget it!"
And walked out.
for offering the seal to me; Maybe it will be more potent than the last one,
which I can surely use. Especially Tuesday, for the dreaded scans...you can
carry it for me Tuesday since I won't have it by then. These are major scans.
it approaches, I am more nervous as to what the results will be. Monday
is the prep all day and Monday night I have to drink a bottle of barium.
And another one on Tuesday morning - another whole bottle of the white chalk.
I sneak some chocolate syrup in it! Then the radioactive injection
an hour later. What a cocktail running thru my body. I am afraid
to lay on my back under the scanner a half hour because of this continuous
tickle and cough; I can't control it. I don't know what to do anymore.
I just knew that if I didn't take on these battles, then there was no need for
me to be kept here and part of the master web. The thymic is the same;
the Foundation wouldn't have been born if this weren't so rare. Alan does most
of the work for that. He is a treasure. And he keeps my spirits
don't do well with the drive since we have herniated disks too.
Each trek up and back aggravates one of us each time and the next morning we
can't even straighten up.
we are born naked, wet and hungry, and get slapped on our ass...Then
things get worse. Someone sent me that and how true it is. None of us
choose these ordeals along the way.
are wonderful now. Boring is great. We yearn for that.
It is something what we learn to cherish. Too bad we didn't know
all this in our 20's and 30's.
only this drug is working. I won't care about the side affects. I
still can't comb it and it is still falling out - the thyroid medicine is
unbalanced again from the new drug and that drug also causes hair to fall out.
I am not sure how far this will go. I use a pick to 'arrange' it off my
face. Carefully, holding near the root. One morning I decided to count
the hairs on my pillow case. I quit at 60.
you for the wishes for the cough [last night it woke me and after choking
awhile and plying myself with drugs, I fell asleep]. I hate nights like
that. But maybe your envisioning and wishes will start to help. Please.
give the doctor's at the imaging center and the phone numbers
of all my drs. to see if they can get out a preliminary reading. We are
holding our breath and we get paralyzed to do anything [for days] until we
know what we are dealing with. For example, I wanted to go to the beauty
supply store to get some hair products and I just can't do it. I figure
'what's the use' in case . . . well it's been this way with each scan now for
3 years. We need some good news and hope it is tomorrow.
was at my monthly meeting for the domestic violence team I am on with the
local police departments. By the way, the news flash is that awful
pulmonologist was arrested for domestic violence [assaulted his wife -
stinking coward]. Pays to be on the inside - I get all the stories.
work with the Foundation is daily; people are contacting us at an increased
frequency. Such sad stories - it scares me so I don't read them most of the
time. Alan wants to try to apply for some type of grant. I
suppose we have built up the Foundation from a multitude of experiences we had
in our various jobs. It has been rewarding so that makes us want to do
so much more. Did you get to go on the Forum that Alan created.
The thymic patients get on daily and exchange stories.
The people we hear from that have this are the kindest souls. One man just wrote in that he has thymic cancer in San Francisco and another lady [the wife of a thymic cancer patient] wrote to him on the forum and said she lives in San Francisco and would be happy to bring him food, etc.
Today, I spoke to one of the owners of the imaging center to be sure there are
no problems with the staff
tomorrow and while I was talking to him, the phone rang and it was Dr. Check's office. They check up on me and are wonderful. They wanted to wish me well and find out when the results would be out. I gave them a bunch of
numbers to call to get the results soon!
As soon as I hung up, Cameron Mathison called. I was bowled over. In the background were TV studio sounds and commands. He was at ABC and about to go on the "View." Parents magazine was doing a segment on making your home safe for little kids. They used Cameron's new home as an example. He wanted Alan to put the segment on his website. When it is done I will send it to you to see.
you won't like the sound of this. We received a call
from the dr. and he told us he got a preliminary verbal report; it wasn't
great. There is an increase in size of some tumors and an increase in
cancer activity [shown by brightness on the radiologist's screen]. And
there is one new tumor. We are very upset over this. Monday we head up
to Hahneman and University of PA. to see the oncologists in Philadelphia.
The expert in Indiana said they could call him. He called, quite
coincidentally, the day we got the results. He said to have our
doctors call him and if there is anything he can do to help he will. The drs.
here will fax him my reports so we don't have to go out there yet.
dr. administering this drug feels maybe I need more time on it plus I need to
take another drug he looked into - again experimental [by Imclone].
We'll listen to the docs on Monday and make a decision. It will be very
confusing because each suggests a different path. When I start to
get down, I think that at least the drs. keep coming up with ideas ---a
year ago, there was nothing.
listen to the docs on Monday and make a decision. It will be very confusing
because each suggests a different path. It was such a
disappointment that my body couldn't have given us a better report the first
time out. Julia and our support system have been providing constant
encouragement so again we pick ourselves up, dust ourselves off, and get
ready to go into the ring again to kill the beast. Never mind it is too
stupid not to know that the beast shouldn't kill its host.
the news today we are wondering if the tumors are growing on my vocal cords; I
am so hoarse lately. Then again it can be the wrong dose of synthroid. I
wish. I am really frightened now. These bastards have a hold
in a vital area and I am afraid they will eat it away. I never really
envisioned what they were doing before. Some are near the esophagus, some near
of the day ------ the CT scan was fine [a very terrific tech; the PET was
the worst I ever had so that doesn't make it easy for me to face the next one.
This tech, Theresa, put on sterile gloves to inject me and then wiped my
arm with alcohol so my skin was clean. Then she turned around and
touched other objects on her tray that were not sterilized and came back to my
arm and touched the area that was to be injected. This cross
contaminated the items she previously touched to my skin that now had an open
wound. I tried not to show how livid I was.
the practitioner puts on the gloves, all they should touch is the patient's
site and sterile objects. If they must touch another non-sterile item -
for example a pen or a cart - then before touching the patient again, the
gloves should be changed. I realize many techs think the gloves are for
their protection but they must learn that they are for the patient's
breach in sterility was she ripped off 2 sterile strips of tape to cover my
wound and then placed them on her cart handle, an object loaded with bacteria,
from the many hands that push it. Then she proceeded to put those strips
on my skin, containing the microbes from the handle. This made a nice
sandwich of the microbes between my skin and the tape. She never
learned some people are sensitive to a variety of substances,
microbes included. You could get a staph infection that way.
used to teach this very subject to the seniors I had in high school and
college; and also patient rights [ha ha - a lot of good it does me now].
major problem was she took the infusion set out of my arm immediately, when I
needed a CAT scan with contrast after the PET. The other techs always
left the needle in . SO I had to be stuck again, which should never
happen and the tech should be very careful that she does not suffer the
patient to do this. I had to be stuck in the same arm, giving it
unnecessary trauma. My left arm was on the side where I had lymph
nodes removed and had blood clots during my first surgery. To be stuck
twice in such a short time on the other side is trauma to that arm also since
surgery was involved on that side too. Keeping the blood vessels free
from extra trauma can be life-saving to a patient. How does one explain
that to someone so young as Theresa.
day before the scan I talked to the dr. we know that owns the center and
we understood that Alan could not sit in the room with me after I was
injected. I am confused still, as to why that is their policy. Fox
Chase Cancer Center allowed him to sit with me - it allows my friend to even
leave and go to her office and then come back for her PET scan. The new
imaging facility in the next township over, Galloway, that has a PET
scanner allowed a friend to have his spouse in the room also. They all
seem to be using the same contrast media.
understood Alan could come into the room as I was scanned in case I had a
choking emergency. Last time he sat there with water and an eye dropper.
We understood when Dr. Brezel said he couldn't accompany me in the CAT room.
But Theresa contradicted Dr. Brezel and said Alan could not be in the room,
reciting statistics that we never heard from anyone before. Of course we
are looking for information to confirm or deny [most probably] those
statistics. I have others on the case. As you 'd guess!
asked her to call Dr. Brezel. She said she did and he agreed with her; I
doubt she called since she returned too fast.
I'll check this out too.
final assault from this person with a complete lack of compassion was the
Velcro wrap they put around you to strap you onto the metal table was tied so
tight that after 15 minutes my right fingers were getting numb, and then my
arm followed. All together this was the worst PET scan I ever had. I
hope you never have to endure anything like this.
know what you are feeling. My neck is the same; some days it feels like
I just finished the radiation it is so
is a very confusing report; I am trying to compare with the last one but each
time they use different terminology.
dr. says there is a monoclonal antibody made at Imclone that has been used in
some cancers. We just learned insurance will NOT cover it and it costs
$12000.00 a month. We have no idea where to get that money - we'd need a
minimum of 2 months to try it. But Alan wants to see if this is the best way
to go - we have no time to waste if there is something else that may have been
used for thymic and may work [unfortunately it is all the toxic chemos].
don't want to have anymore PET scans.
news got worse when the final report came from the radiologist; the new
tumor is in my left lung now. And there is a small chain of tumors on the
trachea which might explain my coughing and speaking problems. We hope
we can find someone to make sense of all this. ANd dictate the correct
don't know if this means surgery again or systemic treatment. I am very
frightened. There aren't words to explain how the world stops each time we get
means so much to us that you care. All the prayers will help and knowing
we have them makes this a little easier.
you and your mother are so thoughtful and compassionate to keep visualizing,
sending me the aura and prayers. I know when people send them
because suddenly I feel more optimistic and less depressed. The first week
after the bad news of the scans is the worst - so much has to be digested and
learned at once.
al quaeda cells have to be killed. I try to visualize my immune system
sending out the good cells to engulf them. And I do try to let go of the
negative and evil people I have met. One tape we have says to put them in a
bubble and float them away. Ne'er to return. We're terrified right now.
you for the compliments - we know a few people with cancer and they all do the
same. They are very good role models. It is getting harder and
harder each time we get these results, but this is the worst. I feel
like the walls are closing in on us and it is hard not to get beaten into the
ground. Over a month ago, I had had a recurrence of my trigeminal
neuralgia [terrible face pain]. The standard treatment is to take
neurotin [large doses]. DO you think this could slow down my immune
system so much that it isn't responding like it should.
what protocol they decide for me in Phila. tomorrow, depends if I'll have free
time or feel well for other activities.
prays they find the miracle to beat these bastards. I pray that you and
your family never have to have a week like this. Today we went from dr.
to dr., most of the time is spent sitting in the waiting room. Each time
it was an hour and a half. What you see as you sit there is not a good
sight. It is too sad to see so many very sick people. If it
were any other dr. for any other situation, of course after 1/2 an hour, we'd
leave. But literally, my life depended on seeing these 2 experts.
We were held hostage until they saw us.
is such a scourge that beats all other diseases in that it is stubborn and can
keep coming back. The treatments are 3 types of torture - cut,
burn or poison. Or
all three. So barbaric.
Luther Brady has decades of experience and is respected around the world.
If you look him up on the internet, it is 100's of pages. He is a
radiation oncologist and has a different route [at Hahneman] than Dr. Evans
has [at HUP]. Dr. Brady wants me to come back next week for a morning
infusion of a radioactive monoclonal antibody. Supposedly this goes
after the cancer cells and leaves the healthy cells alone. Sounds too
good to be true and of course it hasn't been tried on thymic cancer. Dr. Check
wanted me to do the same but with a monoclonal antibody from Imclone [at
$12000.00 a month - not covered by insurance]. Hahneman's is the
same, in theory, and IS covered by insurance. I'd go 3 weeks
in a row to be infused each time.
HUP she wants me to start traditional chemo - bad side affects, like heart
damage, liver problems, bladder bleeding ---nothing minor. Then you lose
your hair [eyebrows, lashes, all over the body]. There is all for only a
50% chance that it would decrease the tumors in size somewhat. The other
problem is it is NOT a cure - only to stem the tide of its growth. Thymic
cancer is fatal unless they find the right treatment. As soon as you
finish a 24 week cycle, the tumors may start to grow if you stop the chemo.
So then you go back on it again. She thinks my vocal cords are being
paralyzed by the tumors pressing. Now I need to see an ENT to see if he
can do a procedure to help stop this. It is too much too think of all these
visits day after day.
As Lucille told me a few weeks ago, she is going to die without hair.
She is in the same predicament. The cancer spread from her bones to her
spine now to her liver and now she is on chemo EACH week and her hair is
falling out. Her daughter's wedding is next week. I can see how it
is so hard to hear people say 'oh, it doesn't matter if you don't have hair.'
She will be on chemo forever unless someone invents the cure.
doesn't get any better......just worse and you have to be realistic or else
the let-downs get too hard to bare.
you so much for calling. You have become so dear to us. I was going to
call you back today but my voice was too ''bill Clinton-ish.''
am a little slow at answering email these days. For a week or so after these
scans, I always go into a depressed mode. And on top of it all, 2
patients that we have met thru the Foundation website have been
deteriorating with their thymic cancer. And we heard they just died.
One man was 37.
scans are never going to be the news we want, it seems. We want to hear that I
am cancer free and I will NEVER have to have another test of any
kind to see if there has been a re-occurrence. That's what we want. It
may not realistic.
we also know that cancer is not the end of the world, it is a major disruption
in our lives. We resent it. We become jealous of everybody who gets up in the
morning and goes about their day the way we went about ours for so many years.
But, it's not the end of the world even though for that week after the scans
it seems that way.
are so pleased we could start the Foundation and never had any idea we could
have such a positive influence on so many. The spouses of the 2 that just died
said how much the patients needed the support of others that have this.
of cancer, we have discovered how many friends we have who really care about
us. They pray for us every day. I can't let them down.
favorite 'temple' is Temple Sur Mer ---to sit by the ocean; if God isn't
there, then she isn't anywhere.
is so not a game but they give us the choice of choosing door number
one, door number 2, or door number 3. Your prayer for clarity is a the one
we need. I am choosing to go from less toxic to toxic. Chemo scares the
hell out of me. Two more thymic patients died and they were on the same
protocol they want to put me on!
door number is to do nothing. I'll start with the monoclonal.
Maybe this will be the one!!!!!! Just a treatment that if I have
the protein on my tumors, they hope the antibody would attack those cells and
will slow the growth. Going from less toxic to toxic.
I may be able to try Iressa in between but it has many side
affects and some serious.
Thanks for writing and your support. I feel like you - I have been given miracles already, the chance to try some drugs that weren't available before. The one thing I have found to be common about this thymic cancer is that nothing is common. Everyone is different, so it is really just a coin toss for the drs. So I have been avoiding this for 3 years and it pushes my bravery to the limits.
do I hate cancer!
is a strange thing - I am noticing I cough more in the house than out.
We don't see any mold. We don't smell anything. We don't know where
to look for what. I said to Alan I cough so hard in here that maybe it
inflamed my lymph glands. Mmm? Denial?
prayers are helping; other options have been explained to us and we found a
path to be on for a few weeks. Chemo is what the oncologist at HUP wants
to start but it scares the hell out of me.
my first choice of treatment is Dr. Brady [A GUARDIAN ANGEL]. It is
the same as Imclone's but better due to the internal radiation.
It is the very back of my throat where the problem starts. Way back - it never
did I tell you we are starting to edit 'my story' that I have been keeping on
this since day one. Alan put it on:
hope it will help the other patients; they ask me a lot of questions so this
way I won't have to repeat whole sections.
were invited to Sandy's house, the lady who lives on the beach, for break the
fast. Did I tell you that last year I introduced your father to her on
the beach [he wasn't interested]. She loves my challah so I made one
plus a chocolate whipped cream cake [made with the Barry's cocoa}. That
was a hit. It was a nice evening; the ocean was visible from the light
of the moon. You could hear the waves crashing.
brother started out poor, living in Camden. He became an attorney and ended up
buying the Kinney garages. He parleyed that money into buying sports
teams, like the N.J. Nets and put some into the Yankees and N.J. Devils.
night I slept the whole night and didn't cough and not much this morning.
We turned on some computers later and I start hacking.
I had my major dance - a prom of sorts. We are holding off the chemo yet
one more time [I am the biggest chicken].
It is the most toxic of the choices. The side affects are just
horrific in themselves yet they'd have to be to kill cancer cells. I am going
to go from less toxic to toxic, if the drs. say I have the time.
Today I had the first infusion of 3 infusions
of the radioactive monoclonal antibody. We came up to Hahneman and will be
there next week and the week following that. If you want to keep me
was tough - the nurse missed my veins 3 times. This has never happened
before; not at A.M.I. [the imaging center when they do the PET and CT's]
or any of the hundreds of times I've had blood taken in the last years.
I told her to stop fishing around and get the needle out and get an expert. It
was agony. And
she had the tourniquet for the wrist fiasco up at my shoulder.
Which is wrong, wrong, wrong. I used to teach how to take blood - for
25 years. The dr. had no
problem finding the vein [you'd need to be blind to miss it]. Then they
brought the injection in a lead container and it was dripped into my vein.
that, they explained that I have to stay 3 feet from everyone for 3 days since
I am radioactive. To prove it, they ran a Geiger counter over me.
The dr. was the control. Not a beep for him; it went wild for me. ANd
I can't prepare our food or have Alan touch me [or hold hands]. Boo hoo.
ANd I have to stay away from little kids [my sister wants me to come to her
kindergarten class and hug each one ---they are very very bad this year].
treatment has got to work. I am trying all sorts of mental imaging
[yours and the dr. gave me some]. I hope something else kills me first
so the blood sucking cancer doesn't get the satisfaction of killing its host.
dr. [Luther Brady] said his antibody is the same as Imclone's, only better,
because it delivers the internal radioactivity. The price is much much
insurance company said they won't cover Dr. Check's drug because it is not
approved for thymic cancer. WELL, NOTHING IS APPROVED FOR THYMIC CANCER.
They have done NO studies or trials on thymic cancer and don't know what works
or doesn't. It has been ignored for a century. The tech at Dr.
Checks said I should appeal it. I did and they denied it. I'd have
to put in a 2nd appeal. It is just so exhausting to prepare this
stuff and the insurance companies know it and count on sick people not
fighting back. Another drug we want to try if the infusion doesn't work
is also not going to be paid for [the HUP oncologist already told us - it will
be a few thousand a month]. You really can't prepare your finances
for an illness like this. Unless you save every red cent as it comes in.
We never thought.
have not seen an ENT yet. I am just so fatigued from visits,
tests, infusions, fighting on the phone with insurances, that I have no
time on my dance card left. Tomorrow I have a cardiology appointment,
made months ago, for an echocardiogram [it shows if my heart can take the
adriamycin chemo]. And I definitely do not want every day of the week to
center around cancer for Alan. We need vacations from it. Eventually,
when I can think straight, I'll make an appointment. When you get this,
you have to work round the clock on it to beat it. But you need to clear your
head too, once in a while. Some appointments have to take a back seat.
for the kind words; and pep talk. Now I can understand why it is
not necessarily a good thing to know where and when and how we will die.
Just having a disease like this fills in some of the data, unwanted
as it may be.
dr. at the teaching institution said his antibody is the same as Imclone's,
only better, because it delivers the internal radioactivity.
said, what I feel. Exactly! I also always say I want
something else to kill me & quickly. I
hope something else kills me first so the blood sucking cancer doesn't get the
satisfaction of killing its host. Where is that
heart attack the cardiologists promised me anyway? For 30 years now -
eat no cholesterol and low fat they'd say. Your cholesterol is so high
we need to put you on large doses of drugs, they'd yell. I refused.
They said they didn't want any part of me then. So I didn't take their
drugs and I am still among the living - 429 mg. of cholesterol and all.
may have a very good point about the survival of the fittest and cancer is a
way to control the rising numbers.
raspy voice just doesn't make it easy to converse these days. It is more
frightening than anything else because we wonder what it all means.
I am directing so much energy and thoughts to trying to effect a miracle.
The problem with this particular type of cancer is no research has been done
on it and what they have tried on others and myself, doesn't work. It is
a tough cell type to kill. We have to find 'its' weak point - and give these
little bastards a trip to hell. I have fought lesser enemies myself
[non-medical foes] and though this time, I have the best experts to be
generals, 'it' is a formidable enemy.
for the radioimmune therapy side effects, he didn't think I'd have many but I
do have some this week. My eye white turned blood red, I have these heat
sensations in my body [which I hope are the bastard cells frying], and my
cough is a little worse at times. LOHH is very bad.
must know that I know about jumping when the phone rings from the dr.
That is why scan time is the worst time of our lives, and imagine if every
time they called it was consistently bad news. You get programmed.
Let me know when you know.
is incredibly sad and frightening. Your strength is admirable even
though, we know more than many, how sometimes it seems impossible to carry on.
people tell me, miracles can happen and Drs. are NOT God so he really
shouldn't be quoting statistics there. It takes away hope and that is the one
thing you should have.
dr. has ever given me a time frame or prognosis [by all standards, I shouldn't
have made it 3 years already]. It always seems so bleak for a few weeks
when the news hits. That is how Alan and I have been since Sept. 14th.
But as we emerge from that now, we see that cancer has become a chronic
disease in most people. You go from treatment to treatment and hope they
finally discover the magic bullet.
emerge from the abyss with your boxing gloves on.
It is a tough cell type to
kill. We have to find 'its' weak point - and give these little bastards a trip
Rabbi called me the other day. I played "stump the rabbi."
I asked him how we get our bodies back to the pre-cancer mode. We all
know 20 years ago none of us had this merde. SO how do we get our
biochemistry to revert back to that time. There isn't much he can't
answer but I got silence on the other end. Maybe he'll have a consult
with some other colleagues on our behalf.
only want this to work. The radiation oncologist said if he sees any
improvement on the next scans they can give me a 2nd set of infusions to knock
the little coward bastards further on their derrieres.
go for the 2nd treatment tomorrow. Then I am a biohazard again for
can feel free to start reading Thebarbie now - a little at a time is all one
could take - take valium first! A psycho therapist I know said if it were
a book, no one would buy it since it is a downer. But I don't
look at it this way - I am still here to annoy the hell out of my enemies, so
that is good!
2nd infusion treatment went okay [afterwards I spurted blood from
my arm like Bernadette of Lourdes] - we don't know what the nurse did wrong
[same one who had trouble finding the vein last time so we didn't let her
touch me until the end and then this happened - she must be the devil]. Nope
- never lost blood before and it should never happen in any infusion
treatment. And that is that! She is incompetent.
- just let these treatments work. And with your vibes and visualizing auras, I
only stand to have a better chance. I just got a fortune cookie with a
good omen "you will have good health" - - - your prayers
are watching over me.
we try to be filled with the hope that the new drug may do something to
slow down the growth of these out-of-hand cells.
paper said you are radioactive about a week; the percentage goes down a bit
each day. By the 3rd day you still are 25% radioactive
watch the debate - we tape comedies and that is all I want to view [......or
was it a comedy].
we get back from the infusion, I had to stop in at the cardiologist's office
in Somers Point for a carotid Doppler ultrasound. In case I need
the super toxic chemo, they are checking out my heart.
night Dr. Check and his girlfriend came to see the Borgata Casino and we met
them there for dinner. He couldn't get over how I looked [he
thought good] and my energy level. He said if it weren't for the scans,
he'd never think I have cancer. He's trying to figure out if the spots
on the scans could be from anything else; we kept hashing it out but so many
experts have read them.I only wish there was another answer.