trying to draw the universe's positive energy into my body.
I was injected yesterday with a monoclonal antibody that is
radioactive. Today were scans; and tomorrow. Certain cancer cells
uptake it and if so, then the drug Octreotide can be given to 'kill' or
inactivate the cancer cells. I have 2 chances of having the
receptor on my cells; 'hardly any' and 'slim' since it hasn't been known
or tried for thymic carcinoma. But then nothing has been tried so
it is better than nothing which is where we were a year ago.
was the hour long scan - thank goodness it was an open scanner. I
had to lay flat on my back, still, for an hour. For
one half hour you have to keep your arms over your head and they get
heavy really fast. It is like holding weights [the ones we grew
ourselves] for a half hour. It is not a
problem...except if you have ever done this, then everything hurts,
everything goes numb, you feel sneezes or coughs coming on and it
is like a small torture until time is called.
was allowed in the room with me and could talk to me and give me
encouragement. That helped tremendously. Now I am not
feeling so good. I think the monoclonal antibody is reacting in
me. It can make you feel symptoms but I am telling myself that it
is in me and eating up the cancer cells.
Very cold, chills, aches...typical of monoclonal antibody shots.
Just have to lay around and get it out of my system.
Maybe the dose they gave me took out some of the few remaining cancer
cells and the reaction is just my body getting rid of the toxins from
the killing. And this will be the end of it. Ash...wouldn't
that be heaven.
Ironically I just read an old email from January 4, 2002
right before I started seeing drs. It freaked me out because in it
I wrote to a friend that I wanted to make a celebrity luncheon
similar to one we just went to for the "Make A Wish
Foundation." But I wanted to donate the money to the Leukemia
and Lymphoma Society. How prophetic. A week later our lives
changed. The I. & L. Society are well on their way so they
don't need my help.
But people always tell me I look good; but no
one can even guess what is going on in my body. The more
they say I look good, the more I worry because each time, I look
'great,' I end up with major bad scans that require hospital
stays. Hence, I hate people telling me I look good. Looking and
feeling mah-vel-ous does not correlate [in our books] to health.
I ever mention this? There's one more thing to try that my friend
Miriam says is a sure fix - brocco sprouts! They have a
constituent in them that is a potent anti-oxidants and that is supposed
to knock out cancer cells. I don't eat as many as she wants me to.
But I keep them in the house and sprinkle them in food. They are
really tasteless so it doesn't bother me [I'd never eat broccoli - never
have - never will]. But these I can deal with. I figure,
what do I have to lose. Last year I couldn't eat them because they
got caught in my burnt throat. Now I worked it that I chop them up
in little pieces [the bleeding obvious]. In a tomato sauce or omelet,
you don't even know they are there.
Thank God for Valium. That is a big help since last
year. And also Deepak Chopra - his healing meditation tape is amazing. I
take it during most scans and it passes the time productively.
The dr. called and they have the results. It seems like there is good and bad news. The good news is I did test positive for the Octreotide and she is polling drs. around the country as to if she should give it to me and WHEN to start it.
The situation is that I am allergic to it since I still have some side affects. It is the same substance they give you minus the radioactivity. She also says that it normally tests positive in neuroendocrine cell type cancers. That is what one of my initial fine needle biopsies theorized but my two surgeries never found those cells. The fact that it tests positive for a neuroendocrine makes it more thymoma this time she said. Could I have 2 types of cancer? The other fact she found was on the scan report my mediastinum has metastases in it. They lit up with the octreotide. SO the CT scan is now corroborated by another modality. It isn't a mere infection unfortunately.
She considers my tumor activity small now so she wants to see when is the best time to start the drug. It is every 3 weeks and I'd be injecting myself after awhile [ that remains to be seen - I would ask my primary to do it]. It is hard to digest all this.
It is interesting; from what we understand it is a hormone
they give you but IT IS CARRIED INTO YOUR BLOOD STREAM VIA MONOCLONAL
ANTIBODIES. They are a vehicle, like a Septa bus. They use
vaccines sometimes to carry in the drugs you need. Cancer cells
need to be penetrated by strong things; sometimes they use smallpox to
take into the cancer cell, what is needed to kill it.
Anyway, here is something I read today.
There is one risk factor that is known to be certain to
cause death. It is such a strong risk factor that it has a
100% mortality rate. Thus I can guarantee that if we stop
this risk factor, which would take no great research and cost
nothing in monetary terms, within a century human deaths will
be completely eliminated.
This risk factor is called 'life'.
Now we will suppress the bastards. They can't survive
our thoughts. They can't kill the host [how stupid of them if they
would do that, right?].
Yesterday afternoon our friend Sandy visited for an hour.
She was up here this week; she got a scare in Florida from her internist
there. Said her cancer returned and she lived a month of hell till
she came up here and had scans and saw her Phila. oncologist. Not
only had it NOT returned but her dr. said her scans get better each
time. She can breath again. The FL. dr. should be shot.
She is the one I met thru a mutual friend who told me
that her throat and voice were burnt like mine and she needed a support
person. Then I found out her brother is Lew Katz. He is a
big philanthropist -builds Jewish community centers and names them after
their parents, Betty & Milton Katz.
I made a challah the way she likes it - to celebrate - and
we took a walk back to her home on the beach.
Ironically last night we went to the dedication event of the
brand new Katz chewish comm. ctr. here. Jerry Blavet spun the
records, they had a pasta bar, sliced pastramis and turkeys, salad bar,
desserts, and they had casino games for which they gave everyone ten
dollars to start. We really had a good time. I love the oldies
"You look good." I have heard that many times. I usually respond by saying, "what you mean is, I don't look like I'm dying." That's what they really mean.
don't consider me amazing - at least no more than any other cancer
patient. I have had many cheerleaders who are teaching me to not
give up - to do so would give the 'enemy within' bragging rights and
besides that...it would be too stupid for the enemy -
basic biology says you don't kill your host.
since it is now warmer, I got brave; I took a ride over to next
town, Ocean City [another seashore resort] because there is this great
pastry shop - I love their chocolate croissants]. But I went on
the back of Alanís motorcycle. Going over the bridge over the
ocean is the best part - never thought I'd ever do anything like
this but it is so beautiful to see the ocean that way. You can smell it
at the same time and hear it. Did I tell you that a year ago, Alan
bought the cycle. It is something he always wanted, his mother
said, even as a little boy. I am not thrilled; I worry every time
he is out. But we learned that there are more dangerous things in
life and you have to do what you want before it is too late. An
older neighbor saw me getting on and asked me if I was afraid.
I said after cancer, there's not much that could ever frighten me to
those extents again.
dr. called me after she polled a few others and it is becoming more of a
reality now that I need to get on some drug therapy. They
aren't sure where to guide me since this is uncharted territory. It has
us un-nerved and scrambling to find answers, that may just not be out
there. The expert [Dr.
Loehrer] did this study
with a Harvard contingent and also a trial group at Johns Hopkins under
a N.C.I. grant. So to answer your question, we did check with the
local [shore] drs. and they never heard of the drug. It is so
necessary to branch way far out.
go up Monday and see her and possibly get started. She recommends
using the short acting octreotide which requires injections three
a day because the long acting formulation was not yet available when
they did the study. There was at least one patient who had
stable disease on the short-acting then switched to the long acting and
had disease growth again, and that then stabilized when put on the
short acting. You are on this indefinitely - or till it stops
then, you hope they have developed something else.
actually think the octreotide is worth a try. The three times a
day injection is the more pure way to go, but the monthly one could also
be tried and we could switch over to the three times a day shot,
if the monthly doesn't do the trick. We have lots of pangs of
nervousness. I am worried about side affects and it interfering
with our lives.
heads hurt from thinking.
I am feeling like a little kid who was outside playing [planning the
luncheon] and the mother calls the kid inside to go do homework. I
want to keep playing. Sorry - I am whining like a brat. I
didn't want this whirlwind to ever end.
You are right about our treatments altering the findings on scans. What could look like a tumor may be tissue that got changed about by radiation or chemo. Scar tissue is tricky to their eyes; that is why it is best if the dr. that knows you intimately, reads the scans too.
And you are right about all the other things - geez, did you ever think you'd become a cancer expert? It is the last thing we ever thought ---a few drs. have even come to US for referrals recently. We never fathomed creating a Foundation but here we are. The morphing you mentioned is true; some cancer patients don't even want to hear that.
as it may sound, I do understand how you feel about writing off those
friends - it being easier not to be reminded of certain trespasses.
We thymics have similar personality traits. It is scary. I
do the same as you; if someone is nice to me, I go all out. But
once they cross me, that is it. Can't help it, like you. It
is just easier. One door may close [you get rid of one load] and
another door opens [10 new wonderful friends come into your life].
It has happened the last 2 years over and over. I do believe. There is
divine retribution and ALan and I have witnessed it over and over.
They do get theirs. I try to keep from jumping when it happens. In front
of others you must keep on that sympathetic face.
Cancer is one tough road; I spoke to my friend Lucille, with breast cancer tonight [it spread to her spine] and she said she walks as much as she can because she doesn't know when she won't be able to. She said most people just take walking for granted and never think that they may not be able to do it one day. Did I ever tell you about her; she is the most wonderful person [---I only know wonderful people ---how'd I get so lucky].
I kind of felt that way today...about spring. The custard stands are opening and we got a notice that it is time to buy our beach badges and I was so thankful I am here for another spring.
And a friend in Sweden emailed me that his wife was diagnosed with breast cancer. He said, " ____is of good heart in the daytime, but when it becomes dark bad thoughts haunt her, and me also; is it all too late? I guess this is familiar for most cancer patients and their relatives. "
He is so correct; this was how last March was for us. The recurrence was worse than the original diagnosis. It was extremely bad for me until I started taking the valium. Those nights before it kicked in were the worst. Thank goodness those types of drugs were invented. They do have a purpose.
You should see some of the emails I get from other thymic patients; they
are so funny they could be sitcom writers. They are such a
positive group. This fellow in England has a growth the size of a
tennis ball [like my former one in my neck] and he wrote:
alien tennis balls had better be worried because the John McEnroe
radiotherapy is coming to wallop them! Is that enough mixed metaphors
The news we want to hear from everyone is that they are healed or on the way to being healed. I only wish I had some magic to make all of your health problems vanish. Radiation therapy supposedly melts away thymic tumors the best we have heard. With your sense of humor, you have got to beat this. I was sorry to read about your pain at night but when you said 'taxidermy' and the tennis ball analogy again, you got a big laugh out of me.
The mixed metaphors are great; you ought to be a writer for TV shows. When they took the tennis ball out of my neck, I had a clot and then a hemorrhage because the vascular doctor gave me too much anti-coagulant. I told the surgeon he was DaVinci [because his incision was almost invisible] but the vascular dr. was a graffiti artist.
are back from Phila. and a long and weary session [and depressing
---to see the dozens of people also stricken and suffering] in the
infusion room. It is chair upon chair of dozens of people
also stricken and suffering from so many types of cancer. A nurse
had to teach us where and how to inject me. If I am a bit
incoherent it is because I am having side affects to the drug...very
very fatigued and achy and chills. No appetite.
Alan did the first one; we may rotate it. Meanwhile, after
the injection I felt lightheaded and a little faint, then as the evening
went on, my head got too heavy to hold up and a headache. I also forgot
to mention that after the Octreotide scan, I had a small rash in
my chest area. Well, last night my eye started itching -- there's a
little eruption on the inner lid, and it looks similar to the one on my
chest so I made an appointment with the ophthalmologist.
even my usual junk. SO now we see if I can adapt to this drug and how
our lives will be altered until I do. This morning was tough too -
stomach pains, etc. May it be from the little bastards clutching
their heads and dying left and right.
b.c., people called me the Eveready Bunny. So I am not used to not
being able to pick up my head. Thank you for your good thoughts and with
all being sent my way, it should propel me on to being here for many
more luncheons. Very delirious - barely thru this one. The little
details propping up each day are consuming all energy for both of us.
treatment seems to have so much toxicity.
My primary physician, Dr. Anastasi [you'll meet him at the
luncheon] was curious to know if there could be any association between
lipid disturbance and this type of cancer. Alan and I will poll our
small group and check the data base. This pool of patients is
trying to find a common thread.
aren't straying far from home now - the drug has given me diarrhea too.
One other concern we have is that after each injection, the
area swells some and becomes red [about the size of a silver dollar].
It itches like a mosquito bite and then eases up an hour later.
As long as all these new signs happening in my body are
in the realm of normal, that reassures me. I can endure. But the first
half hour after the shot, it takes effect quick and I feel really ill.
It is toxic stuff - it has to be to kill the little bastards in
is like being thrust into this parallel universe, watching the world
continue to live as I once did while I've detoured onto a repetitive
cycle of drugs, scans and doctor visits, that has become
my existence. Sometimes, I get to visit my old world, but only
You just can't imagine how the kind words help; to read them is medicine. Each positive thought is energy that is good and wonderful. I try to absorb them all. Alan is doing the injection so far; I haven't mustered the courage. I am good at taking blood out; not putting solutions in. The side affects have kept me off the computer most of the week; it is hard to hold my head up at times or there is the headache or dizziness. Not to mention the diarrhea. I think I lost 10 pounds in 4 days. That is why I always say you need a cushion of 20 pounds. It has been my motto for 2 years. I am so lucky to have this torture, my friend said, since a year ago, they had nothing to offer me. Progress. What a way to look at it.
Good question - why night time? Light is more uplifting versus dark so maybe it gives the illusion that things are better. But you hit on it ---being all alone with your thoughts could make for a panic.
we really do freak out but the meditating helps and of course...God
Bless Valium. There aren't appropriate words in the dictionary to
describe the abyss you are thrust into but others that go through this
just know what you mean. Last March was especially this way for
us. The recurrence was worse than the original diagnosis.
When I spoke to our radiation oncologist he suggested valium, which I
had never taken before. Thank goodness those types of drugs were invented. They
do have a purpose. Even though the facts do not change, my mind is free
to think more clearly. And I do sleep better. The other major help
is since June we have been learning how to meditate each day. We
have a Deepak Chopra tape called the Soul of Healing and it is a
One other concern
we have is that after each injection, the area a lot some and
becomes red [about the size of a silver dollar]. It itches like a
mosquito bite and then eases up an hour later. As long as
all these new signs happening in my body are in the
realm of normal, that reassures me. I can endure. But the first half
hour after the shot, it takes effect quick and I feel really ill.
answer your question - the 3
injections are given EVERY day, no time off. Very tiresome,
getting over each one and then anticipating the next.
have spoken to a few drs., including the expert in Indiana who just
published an article on it in January, and all agree with this
approach...at least to try this now. Our primary is amazed with
the drug and that someone found this in the last year. And our
oncologist at Penn, thought to use it. It is a Novartis
discovery so may it do as well for this as Gleevec does for leukemia
are extremely pleased with all my medical care. We did not go into
this lightly. Our dr. spoke with the expert in Indiana, who IS
coming to the luncheon [he has seen the lion's share of cases and is on
the Foundation board]. He also called us. The dr. emails us and
just called to check on me. Our primary called and is amazed that
this drug is available and my specialists found it. The dr. from
Penn is wonderful and emails us and just called to check on me.
How she does it is tremendous - she has 2 babies at home.
You were right - you just know when the dr. is
right for you. She
has been there for us. Phone and email. We feel so lucky to have
found the team of drs. that we have. Incredible, brilliant people.
Just from deducing what our local imaging place told us a while ago, the PET scan only shows malignant cells [* see sentence after for the ever present medical hedging] so thymomas are not malignant an wouldn't show up. * The PET scan does show false positives though. Like inflammation may show up on a PET - the test is based on sugar metabolism.
If you are uneasy with the dr., get a 2nd or 3rd or 4th opinion. When we started out on this trek 2 years ago, we must have polled 40-something drs., I bet. It is hard work and you don't feel well enough to do it but we did make it to a few large teaching institutions for opinions.
food gets caught in my throat; it doesn't even have to be dry food.
My throat is just so burnt that I need water to constantly bathe it. The
voice will only last a certain amount of time and then it hurts to keep
talking. I tell people I have to hang up and they just don't get
it and keep yammering until I finally croak out good bye
[That's It! I can't stay on 5 or 10 or 20 minutes after I say it
hurts]. They have no clue.
you for your sweet remarks on Alan. Many of our friends wish he
could be cloned so their daughters could have a similar spouse. He
is just such a special person and that is why I can never complain about
my plight; if I have had a lifetime with him, there is really nothing
else I could ask God for.
your visualizing and our meditating, this HAS to work. Plus others are
patient to our data base! Coincidentally, a patient emailed the
Foundation today from Italy [36 years old]. She has thymic
carcinoma and is being put on Octreotide.
says I must be feeling a little better today. I called the EPA
because of a contractor next door. The homeowner removed their oil
tank and replaced it with gas heat. But not before it leaked and
seeped into the soil. It is ironic what a big deal they made about
the soil having to be removed because it is poison - yet the contractor
has negligently left a huge
mound of soil / sand [about 10-11 feet high ]
blowing all over the neighborhood getting on children, animals,
people and birds as they walk by or in their houses. It is being tracked
in houses and cars and even over to other streets and
they covered it with a tarp but the winds blow it off each day. Even
several times a day. What a nice controlled project
those people are running. It is 11 feet high and hazardous waste.
Other shouldn't have to go thru what I go thru. This is preventable.
Beranato ["Contract Services"]. Either his numbers are
disconnected or he doesn't return phone calls. It made me crazy
because I already have cancer. This pile of 11 feet high and
hazardous waste, is visibly blowing all over. My photos, video and
a possible article may get me the Pulitzer Prize.
have so much company; most people don't know what to say about moi ...and
you just joined my merry band. I have had such remarkable
cheerleaders now for over 2 years.
thymus does nothing in adults - it gets replaced by fat. As
youths, it supplements our immune system. My problem is even
rarer. Thymus tissue stayed up in my neck when I was a fetus.
But it didn't do anything to me until 2 years ago. It decided to become
a tennis ball [how's that for an accurate scientific measurement].
answer your question - the drs. don't know much about this type of
cancer but all agree they don't think it is hereditary
I am running out of skin space for these shots.
We had to go to my semi-annual ob-gyn visit and he is an extraordinary man [who is also an endocrinologist who has had some ideas - if we run out of options.] He is doing research on cancer and hit upon something. We aren't sure if and when it could be for me but he wants to investigate the possibilities. This is very tricky because the drug is not approved for cancer purposes. He said he can't get a supply of it readily and it can't be ordered easily in a pharmacy. I will tell you on the phone more. Alan is researching it for him. Another even longer longshot. ANd a political bombshell. You never know. We try to keep hope.
has published many articles on it and how it has stopped cancer in some
The injections are in the thigh, abdomen, and only my right arm [the left can't be used since lymph glands were removed on that side in my neck during the first surgery]. We are quickly running out of places that are not black and blue or sore. The abdomen hurts too much to do it there.
Patrick Loehrer, the thymic cancer guru, did a N.C.I. study on
this with Dr. David Ettinger [Johns Hopkins] and a physician from
Harvard and it was published in January.
is always a pleasure to get your emails. A year ago there were no
emails from anyone with what we have. Now it is almost weekly that
we add 2-3 patients to the data base. The multitude of treatments
being used will be of help to all of us and then also our doctors.
the ampoules we picked up from C.V.S. are a bit different than what
was used at the hospital last week. These are glass
ampoules that need to have the top broken off [at a marking].
I already cut my finger once as it snapped open. It leaves a jagged
edge. Today Alan cut his finger, too.
the subcutaneous needle is too short to go into the bottle to uptake the
majority of the solution. It involves a lot of tilting the bottle
on its side and carefully not spilling any or getting too many bubbles
used these types of ampoules when I trained in the clinical labs in the
60's; thought we'd be further along than this so many years later.
said this is all they can get. I called a non-chain pharmacist I
know here [Steve Chang - he is a miracle
worker] and he can
get a bottle with the rubber - type stopper where you insert the needle
and turn it upside down. It is a larger dose solution in which 1000
mcg=1 ml. The beauty of it is that I'd be injecting less [a half
ml. as opposed to 1.0 ml.] so the burning and redness would maybe be
less. The dr. is arranging it all with this great pharmacist.
Whew - some tiny relief in site. TO inject half the amount so the
needle is in my arm less sounds like a blessing.
uncomplicated life was 2 years ago, right?
you for your inspirational words. I do believe there is a job for
me to do. We both are doing the best we can to interpret and
figure out what it is. I know that there are some things I must do
and have always felt that giving back is the plan. Dividing up the time
we are allotted is tough.
new bottles have a rubber stopper. I was so excited today for the
first one, that I forgot to wipe it off with alcohol first before I put
the needle in. Yikes. Hope I don't get an infection.
there is always a problem. The needle is extremely sharp which is
a help so you don't feel it as much. BUT - - - after it goes thru
the rubber stopper first to uptake the solution, that dulls it.
When Alan put it in my arm, it had a tough time going in. I think what I
will do from now on is use a separate needle to load up the syringe and
then put a new one on to inject moi. Afterwards, I'll store it in
alcohol to keep it sterile.
so much for the blue. I try to absorb it often. This should help
improve our mental communication even more. Alan and I are taking
a Reiki level 1 course. The first session we got a
book and the instructor did a meditation and an attunement.
The energy of the earth was put in us. Tomorrow we go and learn
how to put the energy in someone else or ourselves. You started me
on this road, remember. You should be so proud. It was
hard to make the class [it was at 5:30 and my shot was at 4:30 so we had
to get in the car when I was still feeling not good].
Thank you for asking and caring. I am comfortable most
of the time - as comfortable as I can be. You're never the same as
b.c. At my surgery sites, there is a lot of pain. ANd where they
radiated me there is residual burnt tissue problems. Like
they burnt my spinal cord a smidge and now I have L'hermitt's syndrome.
I think I told you they also burnt my thyroid so that is out of order
and I need synthroid.
The drs. really did their best considering how rare this is.
My first surgeon said we could spend 6 months on the internet and find
nothing out about this cancer. So, Alan has spent 18 hour days on
the internet ---starting 2 years ago [that is how the Foundation was
born]. If there is anything to know, he'd have found it. All
my drs. are always trying to poll their contacts. In fact
sometime they COME TO US for referrals [isn't that a kick - we as
patients, used to go to them for referrals!].
The bill for the first supply of Octreotide was
$7900.00...one month's worth.
Just remember, we have cancer but it doesn't have us.
We are warriors. We need to beat the little bastards into submission.
know exactly what you mean. People I meet tell me their drs. say
that there is a cure for their type of cancer [usually Hodgkin's or
lymphoma]. And sometimes their drs. say that for whatever
happens to them along the journey, they have a treatment. Well, I
have never heard those words. No one has given me any indication of
anything. ANd for a person that is very organized, and plans every
detail, and despises lose ends...this is a pail of slop dished to me.
Can't plan too far ahead and plans get disrupted easily.
Yes, in my mind, I know it isn't forever. If it doesn't work, then that is that. If it does work, then it only works for a little while. Once mistakenly dropped that bit of research and I alienated the rabbi [the one with leukemia] because he is in denial. But I know and have read, that cancer cells, after a time, learn to grow again, in most people, since they become immune to the drug. Then they have to go on something else.
find myself doing some things a little differently. I am not wasting my
time on people or events that do not matter. I am living for today,
being thankful for the friends and family who continue to make my life
We have been invited to Passover in Phila. and Rydal but are staying close to home. These injections limit my mobility for now. I don't feel well for a half hour to hour afterwards and just need to be still. There is no way to alter the dosing schedule - we'd have to drive 2 hours after the shot. Not good.
Thanks for your good wishes; we hope they help too. It is a lot to go thru for them not to work. But then, so again, is life. How profound.
And we appreciate your offer of help that weekend. That is the best gift we can get now. This thing has gotten so out of hand. We have 20 actors coming.
The binoculars - I promised you - have a story. The binoculars with an attached digital camera were donated to the actors by a generous company. They cost a few hundred dollars each and 12 pair were donated for their gift bags. He wanted to send a thank you to them for donating their time that day. And the owner threw in a pair for Alan and I. And he also donated a computerized telescope to auction off, worth $700.00!
My attitude is there isn't much more we can do about this; every avenue has been explored at this point. We are trying to make the best progress we can thru the Foundation. Sooo, I may as well learn to roll with it.
is like being thrust into this parallel universe, watching the world
continue to live as I once did while I've detoured onto a repetitive
cycle of drugs, scans and doctor visits, that has become
my existence. Sometimes, I get to visit my old world, but only
briefly. Planning the luncheon has let me do that - it is as if the
luncheon has lasted for a year and half. A call from Vincent
Irizarry or an email from Cameron - here and there - makes it seem like
a constant event. These are the nicest guys.
Hope you got to see the website for the Foundation.
It has really blossomed and A.M.I. [the big imaging centers ] is
sponsoring it for 6 years. Last year I was the only patient we
knew with thymic cancer and now there are a few dozen. This is the
best news since each patient's story can help another patient. We are our own guinea pigs. Our drs. around the country [the
world - there is a patient from England, one from Italy, and
one from South Africa] can now talk to each other and see what works and
what doesn't. Alan started a forum and this has become a
help - the other patients say they had felt so alone until they found
others with the same disease.
our first major fundraiser, we are stunned [we sold out the
end of December---we have 20 actors coming down.] This event just
took on a momentum of its own - the number of celebrities coming
down from N.Y. quadrupled surprisingly. The auction items went
from 20 to 70.
have a few minutes then it is time for the injection. I start to
get nervous. I now use ice and massage after each puncture to
reduce swelling. That is worse than the actual shot. Non -
stop worry all the time. I'd just like to quit having scans etc.
We now use one needle for withdrawing the drug into the
syringe, we are using a fresh one each day [I make up 3 at a time
and put them in the refrigerator]. I spoke to Novartis and they
said it is ok to prepare the syringes as long as they are kept cool and
out of daylight. Then we use a fresh needle that is a smaller gauge
for injecting. The pharmacist GAVE us the extra needles for
uptaking the solution. Then Lucille wrote what I had no idea
of - there were devices to break ampoules - will put that in my memory
And today was my CT scan. And here is the kicker. All the drs. I knew there are gone - suddenly -they opened another facility in Galloway and they went there so the drs. that read the scans don't know me at all. The others used to do me favors and tell me while I waited. I called Dr. Brady this afternoon and he didn't have any results. SO I am in a state, needless to say. You just get that feeling that no matter what the results, you want to know now and get it over with.
dr. called with some scan results from Monday. Seems there is a
lymph node under my right arm pit that is there. I go up
Monday [3-29] to be examined at Penn and Hahneman. We'd like it to
be a reaction to the Octreotide shots ---you should see what
happens to the site for the first hour. ANd for a day the whole
arm hurts. SO I hope it is a reactive lymph node.
hate to burst your bubble but the Octreotide won't make the tumors
smaller. The most it can do is stop the current growth. They
don't want me to delude myself; the technology is not up to that yet.
Of course I still try to visualize them gone but I have to be realistic
in my expectations.
The speaking being a problem is something I know about; I can be in the middle of a conversation and it starts to get raspy and if I continue it hurts. The swelling, I find, is worse in the morning, after laying down all night. The drs. say it is the drainage - after re-routing everything during the 9 hr. surgery, the fluids don't leave the area as quickly as be.co.
we spent a lot of hours photocopying instructors for each volunteer.
We have a meeting planned on April 3rd so we can go over the agenda with
them...and potential problems. Of which, we hope none happen. But
as Alan wrote in his novels I am eternally, flypaper
for freaks. We got a call today from some man who wants to
interview ALL the stars for his newspaper. Alan told him our press
quota is filled. Then he looked it up on the internet and of
course there is no such paper. As if Alan would need E.S.P. and
hadn't known that already. The guy was really obnoxious.
are planning to round up a few strong people to help up bring the
multitude of boxes up on Friday, April 16th to Resorts. We have
collected so much for the big day - it is in 4 houses right now.
this weekend, I have a calendar with a rigid countdown of chores still
left to do [including what shoes I have to pick to wear]. So I may
not email as much till after April 18th. This drug saps the
majority of my energy and each day I only get about 5-6 emails returned
but 30 come in.
I was healthy, I used to think the mandatory eye visit, dental visit,
gyn. visit, etc. once a year was annoying. But this...well, you just
don't feel like getting undressed one more time. Those lobster
bibs they give you to wear are not fashion show material.
In 6 weeks I will have another Cat Scan to see how Iím ďdoing.Ē So until then, I donít ever really know how Iím ďdoing.Ē How I ďfeelĒ never seems to have any correlation with how Iím ďdoing.Ē The damn problem is inside on a cellular level. And I hate March - 2002 was when they discovered the neck tumor, 2003 was the lung metastases, and now in 2004 there are tumors in my chest.
When I was initially diagnosed with cancer, I had never felt better in my life. But, an army of medical doctors were 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 the surgeries leveled me, the radiation had burned my esophagus so badly I couldnít eat and now the trial chemo injections have made me so weak at times, I can hardly do much but sleep.
know what you mean. The same happened to us here at the shore.
It takes your whole life to form your social circle so you don't think
you can enlarge it at such a later stage. If it weren't for the
Foundation, it would have been more difficult to meet so many people in
such a short time.
me, I know just how you feel. The news can throw you into a
tailspin and then a deep abyss. And the radiation makes you want
to stick close to home. I had 6 weeks of it also [it turned into
10 since they stopped for a while when I got too burnt]. If you
need any words from the experienced one on the radiation, from day to
day, just let me know. I can even send you my log.
And I have been asked many times what it is like to
have cancer or to get these drugs. Seems to be people's
favorite question. SO I now have a new analogy.
It's like fighting the heavyweight champion of the world. Not that I
ever planned to, but it is like someone just pulled me in off the street
and said, "You're going up against The Champ, right now!" The
next thing I knew, I was in the ring and "Ding" the bell
sounded. I looked across and saw The Champ himself and he was coming
I asked the referee how long a fight this would be and the referee only shook his head. Between rounds I get water poured over my head and my corner guy slaps me in the face a few times and says, "You're doing great kid, hang in there." After a few rounds I asked myself, "How did I ever get in this mess?" I still don't know the answer. At some point, I decided to just try and get through this without being knocked out. Take whatever pounding The Champ can dish out and hope I make it. I have learned that this is a fight to the finish.
So far, the Champ has beaten the stuffing out of me and I have not laid a glove on him. That is what having cancer is like. But, I have noticed that not one of the spectators has cheered for The Champ at anytime. From the opening bell to now, every paying customer is rooting for me. And for that,
I want to thank YOU.
gave me a thorough exam and 2 of his residents were there to
confirm his thoughts and they felt the lymph node enlargement maybe
inflammation, for now. It was huge on the scan [he showed us on
the light board] but they didn't feel anything in person. SO they
said that if it were that big and it was a mass, they'd be able to feel
it. We are all hoping it is a reaction to the drug. I don't
do well on most medicines anyway and most drs. don't usually believe me
when I tell them, though this just proves my sensitivities to them in
black and white. Except outwardly it is manifested as a huge 3
inch red welt where I get the injection.
You'll love this. Part
sarcasm. I got my battery of blood tests back today; while on the
drug I need tests every other week. First, the good news. HAHAAAA
- my cholesterol is lower than it has been in over a year. I broke
400 - it is 391. The literature on the drug says Octreotide
decreases the body's ability to absorb dietary fats. I asked the
dr. yesterday and she thought that if the drug really lowered
cholesterol, then it would have be heard about by now. Well, it
works for me.
But my glucose was 30 points higher
than usual - above normal. This never happened before but
Octreotide interferes with glucose metabolism.
why I may not feel well throughout the day. Sometimes I almost faint.
Further, my LDH [lactic
dehydrogenase - a liver enzyme] was over the top ...400 being normal and
mine was 600. It is usually raised in neoplasms, heart
attacks, liver disease, and trauma. So they will be watching this
carefully. We don't want to decrease the Octreotide yet
or too much that it would not work on the demon cells but we want
me to have a liver when this is over. When the liver is off, you feel off.
Finally, my thyroid hormone was way
way too low. Last month it was 7.7 which was too high so they
increased my synthroid. Now it is 0.19 which is way under range.
And that affects
every system of the body. So we are between a rock and a hard head. This
upset them so much the dr. called us at 1:00 A.M. in the morning to
I will fax him the tests - he may
have a dosage suggestion that could be tried. We don't want to
decrease it too much that it would not work on the al quaeda. I
did tell you that he will be at the luncheon. He also has an option if
the Octreotide stops working ---the monoclonal antibody that Hahneman is
can't imagine how I feel like a queen on any day I get to stay at home
and not see the inside of a medical office. Being one who didn't
enjoy shopping at the supermarket, even that seems like a day at the
beach compared to sitting and waiting for drs.
But speaking about how some people are only thinking about themselves, this one lady really got to us. My friend Jean asked how I was feeling and in the middle of me explaining about the 3 injections per day [it was a serious discussion since Jean had to give her husband shots when he had cancer], this one lady but in and starts whining how bad it is for her poor cat to receive an injection each night. We just turned and stared at her; I know people love their pets but how can you compare.
have already been contacted by Gilda's Club [in memory of Gilda Radner]
---they asked if they could hire us to do one of these events.
Being quite delirious I told them there isn't enough money to do this
again......but you never know. If I'd get a remission, I may feel
abdomen looks like I have a tattoo around it from all the black and blue
marks. The only new riddle now is I've noticed that after each
injection, the blood clotting time is much longer than it was [usually
it would be 3-6 minutes]; this week it is extended to about 15-20
minutes. It is surely a factor of the liver - the
coagulation mechanism is regulated by the liver. Can't win but
sure am trying to beat the disease into submission.
treatments are so uncivilized; 30 years from now, or less, people will
look back on how they treat cancer today as the 'dark ages.'
appetite is okay; not after the shots - sometimes not in between.
I have to guess around it all.
I do believe that everything is interconnected by this
gigantic web in life. I have to remind myself often to
think positive ---many beat this, but you have to just keep putting one
foot in front of the other and take a deep breath and help your body
decided to stay here for Passover. We have become non-enthused
over holidays the last few years. Holidays are not the same as
they used to be. Each day I wake up now is a holiday so we don't
go crazy over the individual ones.
had been invited to Passover in Phila. and Rydal but are staying close
to home. These injections limit my mobility for now. I don't
feel well for a half hour to hour afterwards and just need to be still.
There is no way to alter the dosing schedule - we'd have to drive 2
hours after the shot. Not good. Four hours of driving isn't justified
for the discomfort it'd create. All the gang will be here next
at Resorts, the lesson was on the 'back way.' That is the secret
route we will use to ferret the actors into the ballroom. Shih.
They saved that for our very last planning visit there. We were told
there switchboard is flooded with calls from angry people who don't have
we had to go to Gilda's Club . They are loaning us the
clipboards that hold the sign-up sheets for the auction items. Then
they are lending us easels that are Lucite that will hold an 8 by 10
color glossy description of each item. We stuffed both.
we had to go to the Trump Taj Mahal Casino to make some more
arrangements ---did I tell you that the Trumpster is authorizing
his staff to plan big entertainment for our actors on the Sat.
night before our luncheon [4-17]. It is huge. It seems as if
they are planning to invite the celebrities to a dessert reception
since 'the 5th Dimension' will be there performing. We never
expected all these facets to one fundraiser.
We know how our
brain feels; it is the deepest abyss when they say that 'c' word.
All the world you know or ever knew, is turned inside out and your life
changes in a flash. You just want boredom again. You never
want to see the inside of a drs.' office. You have a whole new set
of priorities; your life will never get back to normal again, as it
On the "Apprentice" the other evening, the woman from Trump Taj Mahal that makes entertainment contracts, and worked on the show with the candidates, caught that bitch Omarossa in lies. Anyway she is the woman that is helping us plan the stars evening for Sat. It was surreal watching it.
I do have TWO tattoos ...conservative little moi. When they gave
me the radiation to my neck, they have to tattoo little dots on you so
they can guide the linear accelerator to the correct spot. SO now
[copying from Phoebe on "Friends"], I say they are 2 tattoos
of the world, as seen by my parents [who are in heaven looking down on
made my regular list, which is divided in 15 minute increments.
Any delay throws off the whole day. We keep getting behind.
SO this is how the day goes.
Gilda's was to give us the stands for the auction items and 40 were missing. She said she lent them to someone last Fall. The woman who had them is in Florida. So after a frantic week, she got the stands. They are filthy from being in her garage...all kinds of black stuff growing on them and leaf debris. Now we have to clean them all. All minor but so time consuming.
Cancer is such a downer and some days hit me differently than
others. It is all so final - not like a cold or toothache or
Anyway, the auction is over. The event started
for us on Sat. night - actually Friday. What a story of a once in
a lifetime party we are invited to. We were calling the Trump Taj Mahal for food coupons for the actors
and so the Trumpster authorized his staff to plan big
entertainment for our actors on Sat. night before our luncheon [4-17].
It was huge. It seems as if they invited the celebrities to a
dessert reception since 'the 5th Dimension' gave a private
performance. We never expected all these facets to one fundraiser.
The 5th Dimension is Trump's favorite group . Small world
---the woman from Trump Taj Mahal that makes entertainment contracts,
worked on the show the other evening and caught that Omarossa in
lies. Anyway she is the woman that is helped us plan the stars
evening Sat. Then the actors were invited to the
Casbah Club there in the same casino, free of charge [with their names
- and ours - on the V.I.P. list]. We've never gone to clubs
but dessert is so up my alley.
The event is over and we are exhausted. We were there most of Friday
afternoon, bringing up the auction items to be locked up until today.
Then yesterday we were there to greet the actors as they arrived from
And today was a blur from 8:00A.M. till 4:00 and we collapsed when we got
home. The Saturday Night Live tickets did very well, as did
time flew. Sometimes I wonder if I was really there? I think
I blinked and missed it. We
were so impressed how every volunteer could read our minds and get all
the jobs done even if we weren't there to tell them. TO have such a group that can work
independently and foresee what needs to be accomplished without someone
standing over their heads was a godsend. We had the best people
there pulling it off for us.
We would have fallen flat on our face if you weren't there.
than all that it was a fun event. The actors were wonderful
and patient with the fans and very very personable. Some fans can
be so trying. They wouldn't respect the actors' time to sit and
eat lunch and even with security all around the tables, a few were
obnoxious. I personally went up to one hyper jerk who couldn't
display any decorum and after 2 warnings said that the next time I was
having security escort her out. Some of the tables of other guests
really got a kick out of watching some of the spectacle.
auction items went well. All but 2 items sold [we decided not to
sell the artwork and the I.V.F. cycle there]. We'll get higher
bids on eBay...that wasn't the crowd for the high ticket items.
Except to sit next to Cameron - someone paid $1100.00 to sit next to
him. Actually 2 people did and he said it was ok to have both.
Is he a doll.
Vincent has really helped the cause because he said we can auction off
lunch in N.Y. with him so we will do that on EBay too so the
disappointed fans of his that didn't get tickets can join in. He
was surprised he had so many fans that didn't get tickets. He was
a pleasure this weekend.
we felt like the concrete blocks on our shoulders were removed.
We will have Regis and Kelley tickets to sell and do it on EBay
soon. 2 pairs.
Then we got the news that the bus taking the actors back broke down on the
expressway. We had trouble getting the company to get them limos
[for 5 hours]. We are now done spazzing out.
room looked beautiful - the centerpieces were donated by a local florist
and we never expected them to choose roses and liatrus and various other
different species. The flasks were donated by Corning so it looked
like our brochure. The auction items were all decorated
colorfully and our volunteers really really helped us stay on track and
handle the multitude of details that kept cropping up. Still could have
used more security and helpers but we made it.
you get to meet Donna Ostroff - I wanted to introduce you. She is Sydney
Pollack's assistant. She brought Alan and I a gift [not to
auction]. She had him sign 3 CD's for us before she left CA.
Tootsie, Sabrina [my favorite], and the Way We Were. He wrote nice
notes all over the covers.