cardiologist is another story - she will be on her way out of
our list. I faxed her today and asked for a call back.
Nothing...and after such a serious report. Tomorrow I call her
personal cell phone. Now I need to find a new
The CAT scan revealed THREE spots now on the right lung, 2 suspicious lymph nodes, and something in the upper abdomen. We only spoke to the radiologist reading the scan and he said that the more spots he found, the less likely that they were nothing. So there would have to be a biopsy to prove it is the same al quaeda. If not the same cells as before, then it is a new enemy. As for taking the biopsy, we need to figure out whether to have it done here in the hospital or up in PHila. Or come up to Phila. to get another opinion on the scan from a thoracic surgeon. Or to wait for the CAT /PET scan in a month. We are [all at the same time] frightened, numb, can't even focus or think straight, and don't know even what to do. We are waiting for some of the drs. to call and give us some direction.
I don't expect any help from the cardiologist. I called her on her cell phone today and she said all my results are normal so she put me on the back burner [to paraphrase]. I told her about the scan results and they are NOT normal and she obviously hadn't seen them. She said she'd call back and didn't so now I have to find a new one.
Going thru the CAT scan today - I kept telling myself - that is nothing compared to what the road ahead might bring. For the CAT scan they insert the I.V. needle kit in your arm and it is hooked up to the contraption that releases the radioactive tracer. All this before they slide you in the machine and then at the right time, they release the dye - tracer [which makes your whole body burn] and then when they take you out of the scanner, they take the I.V. line out of your arm. Like you we are praying for a miracle. One is needed big time now.
It was good reading your words and we could feel strength emanating from FL. all the way up hear. We hope your words are true, true, true and these spots are not malignant. But we have noticed a change in our drs. From being casual and laid back, suddenly they are moving fast. All along they said "So wait till the end of April for the new Pet/Cat scanner to be running" and now they are starting to have me see a medical oncologist right away.
is so difficult to believe how everything was going along fine here
until Monday. And now, all hell has broken loose, and making a
reality every cancer patient's fear. We spoke to the
various doctors [ the radiologist reading the scan, my primary, and
my radiation oncologist], they said that --- get this -- - the
most fear-inspiring words you could ever hear --- they all want
me to see an oncologist to decide the path we have to take now. I
bet I lost 5 pounds this week with fear and not being able to eat.
got me into Dr. Robert Goldberg in Somers Point on Tuesday morning.
Probably, they all think, the next step will be a biopsy.
But they want his opinion and direction. It won't help to get
any 2nd opinions yet......there has to be something to give an
opinion on. We have the names of several oncologists to
consult when it is time. There are our illustrious board
members on the Foundation. But it is agreed, that unless we want to
move, we need an oncologist that is very close by. We are in a
better position than a year ago because then we knew NO ONE.
much for the one year anniversary. We passed it by a day.
We are praying for a miracle... like a tiny corner of my
mind has this dream that says let these spots be new shingles [I
actually felt new pains similar to the shingle pain on the left].
Oh, let it be shingles - pray for shingles. We also pray for
maybe some new treatment ideas. One is needed big time now.
The thought of chemo down the road is ......no words. Nothing scares
me more than chemo...not even death.
Cardiologist finally called this morning. . She was the
only one that had not called all week. She saw the report and
realized how important it was. She is definitely not perfect
but for the time being I will stick with her because I have to use
my energy for the other drs. She is ordering a stress test because
she doesn't want me to have any biopsies before they are sure I
wouldn't have a heart attack on the table [that would be preferable
to chemo ---just check out quickly with no torture].
We're back to being numb and walking around in a fog.
I had been wavering back and forth about not staying in the campaign for the Board of Education but decided to keep on going. It doesn't remove these huge weights I feel pressing down on our shoulders or diminish the dark funk I feel but it does take my mind off of it for a short time.So we forced ourselves out of the house and walked around 3 or 4 streets and handed out my flyer. It is always uplifting meeting people since they are so friendly here.
We spoke to Harold today [retired radiologist] and he helped restore calm for a minute. He said they are comparing apples and oranges at this point. The PET scan measurements of a growth are physiologically determined he said and can not be equivalent to CAT scan measurements which are anatomically derived. He said the amount of millimeters my spot has grown may well be within the normal range of differences. That was one interesting point.
This latest siege with the spots on my lung and abdomen are just overwhelming since I am not healed from the last siege My body has suffered from all the surgery and radiation and I am not ready to handle more invaders. The news just propels you into a dark place because it means an uncertain road ahead and one filled with pain before healing, if that is meant to be. It is too hard to explain. But that is scary. It is even hard for someone to imagine it or roll playing because the fact that it is not real doesn't put the same fright in you. Except my friend in CA. who called tonight and said that once in a while she has a dream that is so real, where she was told she has cancer
all know life is finite but don't know when it is going to end.
When a dr. gives you news like this, you just know that your end is
a lot nearer and when they mention oncologists, then you know it
isn't even going to be comfortable.
May you be right and I don't fit the mold and this is some benign situation that is strange. The liver story was so good; I love stuff like that.
Today we tried to walk thru normal motions, like go to some stores at the mall, but it is hard to get enthused about anything. I remember last year well - why buy something I may not get to use. You can't help it.
night, it is the worst. Even for others - Harold told Alan
that the night I told him the latest news, he couldn't fall asleep
till two in the morning. I suppose, all of us are mind-melding
in the wee hours so let's try to push positive thoughts into my
cells to be normal already.
We will be up Monday to go to Hahneman - Dr. Brady called us this morning and he said not to rush into anything until he looks at the films AND the report. He was going to fit us in tomorrow but Dr. Goldberg fit me in here [yes, he is a medical oncologist [ that is a chemo dr.]. As opposed to Dr. Cassir who just calculates your radiation dose. Didn't you always want to know all this.
Yes, I will take the shingles. Everyone is praying it is the shingles infection. Funny what we pray for at times...there's the humor in this.
It was also sweet of you to write such caring words. Alan has always been my Prince Charming, so dedicated and takes care of everything, effortlessly. So you are right - he is a blessing. Thank goodness for him.
just saw the local oncologist today that our radiation
oncologist sent us to. From the radiology report, he feels that my
cancer has spread to the lungs. He has recommended
"palliative" chemotherapy without having a biopsy of the
lung mass -- he feels there is more danger in having the biopsy than
with the chemo. We don't know what to think at this point. The visit
took us down to the depths. It
was a big downer, which is an understatement... taking away
what little appetites we've had.
He feels this spread could have happened even before my
surgery last year and there may be other places that metastases will
show up one day. He
gave us a potent dose of sadism.
From Dr. Brady we are heading over to his colleague, an oncologic surgeon, who will give us yet another reading of these scans. They will advise us also to what type of biopsy we should seek and by who. I know I would want the biopsy results just to make sure that I need the chemo & to be sure I get the right type of chemo for the right cytology but the dangers in lung biopsies are horrible - they crack open your chest to do them.
was a great calming effect today; we panicked [you'll see why after
you read the following]. And thank you for the
offer of Sloan and
have spoken to TWO drs. and they said that they found FCCC doesn't
the patients as people, but more like a means to a buck. The more people
they sign up for a particular protocol, the more money the center makes.
Kind of like a course in college - if no one takes the professor's course,
then it is dropped the next semester.
- we looked into them in the Fall, after the first spot.
Vaccines are not perfect. I have a 20 page application from
We've been pretty down since we saw the oncologist yesterday. He totally upset us - it is hard to sleep and we have no appetites. Plus now we have to go around and make appointments for 5th, 6th, etc. opinions. More tests have to be done, and it is hard to want any more done to me after the last year. I just want to be left alone already.
I canceled the heart scan he wanted me to have today [to see if it is strong enough for chemo]. Made it for Friday and then canceled it till next Friday. It is another injection and my arm is still so sore from the 2 I.VS..'s last week. I canceled his appointment for Tues. and made it for a week and a half later. Whether this all is smart or not, I don't know. I am just dizzy and frightened and would rather have that big heart attack or be subject to a terrorist attack - all quick, one boom. None of this piecemeal pain. I do not want to be made sick and have to heal again.
We are not 100% confident in the local oncologist. That is the problem. Alan has done so much research on thymic cancer that our own drs. consider him an expert. Dr. Goldberg said it is the same as thymomas and that is wrong. The cytology is different. Even Dr. Kelley told us to be wary of anyone who said they are the same.
When we go to the drs. we have little test questions. Another error he made was trying to 'grade' my malignancy. He was using a system for most cancers but not for thymic. There is another scale for that. He was upset no one put down the grade my malignancy was but he couldn't do it either. It wasn't in his book and he was frustrated.
adriamycin [kind of an old fashioned regimen we are learning].
At least that is what the slip said for the Muga scan baseline.
AND......adriamycin can be toxic to the heart. And look at my
poor heart anyway and he isn't taking that into account.
Lucille said he did me a favor by saying all these things because now it shows he's an idiot. She was outraged as were others. The general consensus is how ignorant of people they have been and they probably never dealt with this on a personal / family level [and that does not excuse what they put us thru].
The general consensus is how ignorant of people he had been to want to start a chemo regime to someone without a definite cellular diagnosis. It's a major step that shouldn't be omitted, a dr. from Harvard wrote us, especially if it is a suspected first recurrence.
Yes, medical sadists. Macho. All your adjectives fit
are investigating other new developments [Iressa, etc.] though no
one knows if they work on thymic cancer because no one has ever had
a case of it and there are no statistics.
Mike for his opinion; we value his lifetime of experience.
The research and waiting are torturous. Last year,
we don't remember feeling so down.
We are trying to stop trembling
made an appointment with Dr. Freiberg at
still hold this little corner in my mind with the thought that
maybe the CAT scan interpretation is wrong. No one else has
seen the scan films except the imaging center. Usually
Dr. Cassir asks me to bring them over [or he orders them]. One
thing we have noticed is the way the radiologists at A.M.I
write up their reports are in the alarmist-mode. One of our
friends, a dr. has this distrustful side from observing a certain
imaging center in Phila., and he thinks that maybe it is to
encourage more tests hence more revenue. Who knows?
We read about all kinds of horrible situations in every industry
every day. I try not to think that way.
doing our work for the Foundation, we get letters from people
telling us about their shaman 'drs.' We can't believe the
stories they write. Now we learned first hand so maybe this
was good so we can help them more.
It breaks our hearts to read people have drs. that gave them
the wrong treatment or the dr. wrote them off or the drs. don't know
what to do. We can't believe the stories they write because up to
now my care has been flawless.
like you said, last week, a pathologist we know at
thank you and your family for all the good wishes and prayers.
Maybe they worked...somewhat. I guess it could always be a
worse report - Dr. Brady felt I should have the combo PET/CAT
and then a needle biopsy [CT guided] and if it is malignant, then
he'd recommend an oncologist at
feels the growths should come out and the lymph nodes involved with
it. No one knows much about thymic cancer except the pattern of
spread is from where I had it down to the lungs. He feels
it is probably that while Dr. Brady holds out a small hope it could
be something else. So we are confused. We have 2
appointments with the big thoracic surgeons ---one at Jeff. and one
I am learning that it is very hard to enjoy anything with this hanging over. I am frustrated that the future looms with pain and discomfort again.
Enjoy every minute. Anything that is not cancer is a dream. Cancer is so final. It breaks our hearts to have to deal with this again so soon with no respite.
In all this horror, it is wonderful that you are there to be such a help and great support. Thank you for knowing your work so well and suggesting the prescription for me. I took one and already feel much better. It is a miracle drug and can't thank you enough for helping to get me out of the bad mental trouble I have been in for a week. I've never had my emotions manipulated this way. Not even last year before or after the surgery or radiation.
This was the straw that was going to do it. I'll be able to think clearer now and make better decisions. You ought to write a book ---a step by step primer. So many people could benefit from your lifetime of expertise in all of these matters. Dr. Cassir's practice is so lucky to have you.
social worker at the hospital said she is praying it is typical
Barbara and something weird [but benign] is going on. Aren't
we all praying for the same.
Today, I couldn't think or write, I couldn't talk; Alan has been so outstanding in dealing with the calls coming in. Me---I'm dropping things, tripping, spazzing out. Today they prescribed something for my nerves. The word cancer and me in the same sentence is so difficult to deal with this time. It is frustrating to have to face this again so soon with no rest. If it were 5 or 10 years from now, I'd expect this
What put me over the edge today was the imaging center said they didn't have me down for the PET/CAT. They said Dr. Cassir canceled it, I was put at the end of the list, and the girl said they closed my file [I got paranoid since he sent me on to Goldberg]. Turned out he DID NOT cancel it. I will probably have it at Fox Chase Cancer because here, the machine is not set up yet.
this minute, we heard of a medical oncologist in
Seems I have no appetite and find it very difficult to eat most of the time. I get that way when I am upset ---can't remember the last time this happened. Just get very anorexic. So the only things that even appeal to me have to be sweet, etc. Last year I said I felt like I was in a Punch and Judy show. I'd get a little more on my feet, then get a whack down, then try to get up, then get slugged down, etc. It is actually worse than last year. You can do it once but a 2nd time is more frightening.
Dr. Shin called this morning and had nothing special to offer except what we have heard over and over. Find an oncologist and follow a standard regime. Pretty funny since they don't have a standard regime for thymic.
know, I know...don't let the bastards grind us down. Fight -
kick - beat ---we are going to try. If only it could be
that easy. I am very frightened of a chemo regime that is
similar to those many of my friends have been on. Have you ever
spoken to people suffering on it. It is a living hell. Our
Thank you for the encouraging stories. We stopped at the herbalist-pharmacist today [the man who went to PCPS ---remember]. We picked up a few items - a special formula Maitake gold 404 - it works with the immune system and tries to stop vessels [like green tea] from going into tumors. Beta Glucans.
What more can we do. We even went to kickboxing tonight - it helped clear the mind for 45 minutes
let you know about Penn's visit tomorrow. Thanks for being helpful
in telling us details to watch out for . Sheryl from FCCC
called and we got it set up for Tuesday at
. Maybe the
answers this test gives will guide us in the right direction.
Sheryl was very nice and helpful so it seems like it will be a good
experience. It was a relief that she was so nice. After your
stories. We think I can pre-register or am already
pre-registered. I even have one of those 'credit card' looking
you for the information on the drs. and especially from Ila.
It seems so logical. If we could do antibiotic testing on
Petri dishes decades ago, that seems like the next jump. Alan
has been looking it up on the internet and we will ask each surgeon
and oncologist too, if Ila has no luck. It could be a good
tool with something this rare. If it works - from what Alan read, it
was a bit controversial depending if you owned the lab that did the
testing or not.
suppose there is a divine reason for all of this. May it
become clear one day.
scans showed only the right lung had spots - and the suggestion is
to take only the lobe with the spots, not the entire lung. But it
will be dependent on Tuesday's upcoming PET scan.
here's the latest------ we had a visit to HUP yesterday with a
thoracic surgeon to get another opinion - surgery is scheduled for
May 12th. Larry Kaiser -he said he was out at UCLA before
coming East. He would try not to take the entire lobe but
promised more pain than neck surgery last year. Just can't
imagine worst than having your throat slit!
At least he didn't come scrambling in the room saying the CAT
scan is bonafide malignancies.
He was very patient in answering all of our questions but as
soon as we left and digested everything, we thought of dozens more.
We emailed him and HE ANSWERED so he seems like our type of dr.
We are impressed so far.
here is a good sign. John Glick recommended Tracey Evans, an
oncologist [and the best we've met so far] from Dana Farber in
I am going to
is a question for Mike. A friend who is a pathologist
suggests that we ask if the surgeon will send the excised
tissue to a lab that does chemo sensitivity testing to see which
drugs actually work on it. They try to grow your cells on media and
then try drugs to attack them.
I am not sure how advanced it is or how accurate but have
heard that it can eliminate certain drugs so you donít waste time
using them. Tracey is
looking into it to see if it is still experimental and how Penn
without disease is the most important. You can take care of
the rest, after you feel better, The lung may repair itself
over time since that type of tissue regenerates well. Do you
have trouble breathing? Take 2 chocolates and call me in
This is all so unreal. We long for normal again. To answer your question, Johns Hopkins has been one of he only institutions that we can't get any answers from. It is impossible to find out who there has dealt with thymic cancer. A friend's son works there and he wasn't even cooperative. If you have any ideas, we'd love to hear them. One expert - a Dr. Foriestiere - has not returned emails, calls, or letters. She may be the only one we ever heard of that saw a case or 2 of thymic, which is a windfall.
So we continue to be our own researchers and it is a bit much but who else will look after my outcome but us. If it were a common cancer, like breast or prostrate, the protocols would be all set up and you just go to a dr.
this is better than last year since no place had anything
to offer then. Truthfully,
we don't know how people can have cancer and work. It is a full time
job to be your own advocate. This is the way it goes all day.
Appointments to make, insurance to fight and pre-certify and
information to glean. Alan found out that the Mayo clinic did
a study on thymic cancer and found cases of this over 75 yrs. and
FOUND SEVEN! This does not bode well.
major problem is no where and No one knows much about thymic
cancer since it is so rare [not even trials by the NIH] .
My friend Lucille told me tonight she always tries to gain
hope with her breast cancer turned into bone cancer by knowing there
are people worse off than her. Good thought but can there be
anyone with a worse cancer than one for which they have NO
protocol or tried results.
Still in a deep funk that gets murkier.
talk to Emily and Adam plus email. She is the best - last year
when I was first diagnosed, she said something we will never forget.
We had only lived her fulltime then for 2 years. She said,
"We'll be your family here at the shore." You have to love
people like that. They have been such a help. She lives
up to her words.
We have learned how wonderful people can be, this last year. It restores your faith.
has been a very long 24 hours; the scan was at
yesterday [it is so odd - I lived minutes from there at one time in our
lives and now it seems so far away]. Everyone involved in my test was
wonderful. They made it as easy as possible for me. The dr. in charge was a
PET scan at FCCC went very well, better than I anticipated.
An experience like this does make one more spiritual.
Using every bit of energy I had, I laid in the scanner, in a
Zen-like state, concentrating on a protective glow around my body.
Using all the energy others were focusing on me at the same time, I
willed the errant cells to be dead and out of my body and before I
knew it, the tech said I was done [the fastest PET scan I ever had].
The radiologist [Dr. Adler] heard me thanking her and he came in and
wanted to know why I thought Fox Chase was so much better. One
thing led to another and he and Alan hit it off with talk of
computers [what else] and he wanted to show off his computer
instrumentation to Alan. So he was kind enough to send us home with
the films so the techs
gave us copies of the films so we wouldn't have to drive back up for
them another day
. We actually brought
home the images on a CD. But we had no idea what we were
looking at. Today we Fed Ex-ed them to the various members of
I remember your words from the fall ---polite persuasion, or something like that. Fortunately, Donna was very sweet before you came but thank you anyway, because they did take pains to make me comfortable and keep me calm throughout. She seemed impressed of our history together. The experience was much better than we anticipated after hearing your stories and other people's tales. Even the registration area wasn't too bad except for some misinformation. They [I know which woman it was, just not her name] said my yellow card was fine and to go back but when we got there the imaging dept. wanted the red card. I stayed and Alan went to get the card. Nothing like your visit to Dr. Borass. But I told my rad. onc.'s office the story and they did as much pre-registration as they possibly could from their end.
radiation oncologist called later today and he said that the news is
better than originally thought and good compared to what the local
oncologist was predicting. The scan shows that 'it' is contained in the
right lung. It is a few suspicious lymph nodes [which there is always a
wee, tiny chance that they could be reactive from the massive radiation I
had] and a few spots [one of which has grown]. They assume it is a
metastases but say there also is chance it always could be something else
and just to wait till after the surgery on May 12th and we have pathology.
So he said the same as the surgeon which puts a little glimmer of hope in
the picture. The last PET showed an axillary node lit up and that did NOT
light up this time. The abdominal spot is most likely nothing, a few drs.
said after reading the scans. The test is not perfect and has to be used
with other tools. One of the spots has grown since January. That is bad.
So we are breathing again. As always thank you for your support and prayers.
Without them, we'd never get to this point.
Yes, we should do a book. Did we not talk about that before. I can get Alan to publish it! Between us and a few other people that have lived this nightmare, we can really do a good job. Would people buy it? We'd have to make it NOT depressing or we'd have to have a packet of valium in the back. You know, how some books come with CD's...well ours will come with drugs so the reader is not too sad.
This really isn't a time to have any type of holiday; everything feels as if it is closing in on us. As we did last year, Passover will have to be passed over. We can't go up and be at a happy Seder and ruin it for the others. It is not fair to the person who goes to all the work to make it. We were invited to 3 but just can't handle it.
when we got to
city hall, a lot of illegal stuff was going on. We stopped the
election until the county clerk came in. 'Someone'
tampered with the voting machine. As if no one would notice.
How arrogant! Did I tell you I lost the election. And especially
after Gore and Bush in
She was already mad because the school board secretary had literature INSIDE the polls and she shouldn't have. It had all the names on it but mine. That is politicking and ILLEGAL.
immune system is not allowed to deal with this issue at this time.
It is the furthest thing from my mind of subjects to handle these
days. Anyway, we feel like I won the election because
now I won't have to deal with meetings [early morning and late
prayers all helped make this demon still containable for the time so
in that sense everyone played major roles. I just hope this is
the end of it and the lung lobe removal goes ok.
see that keeping the bastard cells in line in my body will be a full
time job. A lot of visualization daily.
I forgot to tell you that every dr. asks me if I ever smoked because
they try to make a link that this could be regular lung cancer.
Of course I never smoked [or touched a cigarette] BUT I tell them my
father did ---3 packs a day and in the 50's they had no idea 2nd
hand smoke was detrimental to children's lungs. They probably
want to hypothesize that this is 'regular' lung cancer. Cytology
am hearing bad things on that jerk oncologist I first went
to. People do have to be SOOOO careful with their medical
care. You and I have been lucky in having excellent
medical professionals watching over us. But how do you tell,
especially older people who are very ill and without an advocate,
about things like the bad stories I have been
hearing. One of the receptionists in the hospital heard 2 drs.
talking about him. He was upset that one of his patients went
up to Phila. for treatment with another oncologist. The
quack said "he didn't come to me; the big guys made the money
off of him and now when he needs a local oncologist for an emergency
visit, so he comes to me." Alan and I knew there were
mercenary reasons behind his plan for me. Even so far as to
use up something old on his shelf...... It was just an instinct but
we always trust my instincts.
nurse told us she knew of a couple where this oncologist scared a
woman with breast cancer so badly, that she and her husband stood in
the hall with tears in their eyes. We sure know that feeling.
The guy ought to be shot - a real life Nazi.
People, including drs., say I look too well for what is going on inside of me. The surgery and radiation left me with constant neck pain, esophagitis, pharyngitis, tracheitis, and Lhermitt's syndrome [spinal nerve damage]. Missing a jugular has been difficult too until the body makes collateral vessels. But I buy very expensive make up and cover up especially in front of Alan. He doesn't need the extra worry. As much as I can we try to do normal things, like we used to. That is my goal. I just hope this is the end of it and the lung lobe removal goes ok. We hope that between now and May 12th no cells spread anywhere else.
Yes, I am sure the cooking clears your head the way taking a ride clears Alan's. You need a break from the stress. And it helps to have a clearer mind so you can make wiser decisions. I am just learning this - why it exhilarates him - I have been on the bike 4 times and each time I enjoy it more and more [uh oh]. He goes slow [my pre-requisite] and he is in good control so I am not afraid. Besides, the views are miraculous.
The same island we have lived on now for almost 4 years, takes on a new look from the bike. I like to head to the end, the point, and smell the bay and see the docks and harbor across to the next island. We stop and talk to people we know and it is cleansing. I said it doesn't get much better than that, the last time we took a ride - so when you say live life, there it is. Whatever you love to do, that is what I tell people now... do it!
ashes to ashes
dust to dust
do it today
before you rust.
you say, we do feel blessed to have so much support. It is
touching. Today we went to see Dr. Cassir. Alan
installed the CD of the PET into his computer. Everyone
was totally impressed with the technology. You watch my body
in 3-D turn on its axis.
So it got read for about half an hour. Dr. Cassir was pleased the left armpit did not light up again [damn razor in December] and he also thinks the abdomen is not significant since it is not lit up in the malignant range [a few have said that]. All the nurses came in to see it. So it got read for about half an hour. As for the lung's suspicious spots, he says the biopsy will be telling. He thinks I will do well and told me to go enjoy life. He viewed all my films on the light boxes and showed us everything in the reports. And the best part, is he'll see me 3 weeks after the surgery. I am very attached to his care and prefer him to a '_____' and I was going to say I want him to coordinate my care here with Penn, for now. But I think he agreed without saying in so many words.
Also at the election I had a 45 minute chat with my primary, Dr. Anastasi [he came out to vote for me 'to support you']. He will help Dr. Cassir coordinate for now too. They do the treadmill together each day so 'my team' meets often.
And Rich Moses called to give his interpretations tonight of the scan. Everyone is still holding some hope that it is some weird anomaly.
you, everyone wants to see me before the 12th. It is starting
to get me stressed. We will stay over that night at The
I would hope to combine some people so we can get together with more at one time since there aren't enough meals I can eat out in the next 3 weeks to accommodate everyone...maybe you can bring the ova to Alan at the hospital while he is on pins and needles waiting. I'd like some calming beings around him.
We will be up Thursday at Penn for pre-admission testing. We hope to be done about or so, if that fits in. And Friday we are supposed to come to FCCC to meet Dr. Angstrom. Just a 2nd opinion, as far as we are concerned. Two drs. recommended an appointment. Those 2 days will be brutal and we will collapse on the weekend.
we get prepared now to spend a week in Phila. - separate
'vacations' for Alan and I [he will stay in a hotel and me in the
hospital]. Trying to get ready to go up is a chore - I have lists
upon lists building up. We like to print out as much as we
need [questions, insurance information and such] because it isn't
around the corner to come home and get it.
need to find private duty nurses, etc. A terrible deja vu. If
you know of any let me know. We feel that it is important
during the night to have them. They were invaluable last time.
day we try to go out. We take walks or drives, and always have
the usual shopping and errands to keep up with. Today we visited a
fairly new friend who lives 2 blocks over from us, on the beach. We
sat on the deck and it was almost Zen-like, watching the ocean from
the dunes. She just finished chemo and radiation herself. Someone
I know said I should meet her because she feels so alone in her
battle and could use some encouragement. So we have been
emailing - she just returned from FL. She is very interesting
and we have more in common than radiation treatments.
She also is very sweet and she has a brother who is a huge philanthropist in these parts. I am hoping she will encourage him to help our foundation. As we were leaving her house, he was walking up the sidewalk and we met him.
in the day I made chocolate fondue on our patio for friends who were
emails help more than you could ever know. You are right about
top drs. Last night my friend told me her niece works at HUP
and my dr. operated on Eric Lindross so his hands are capable at
we were able to go off the island and get a lot of errands
done...that had been mounting up. We needed to get to Kinko's
and copy my medical file for our trip to Fox Chase on Friday. And
here is something I thought of that may help you. A friend
here that is a singer told me to help her voice she buys Penta water
at Bonterra's on
have to keep busy till the 12th or I'll go nuts. We'll be
cooking for Manna one day over at Temple Beth Israel in Linwood
[have you ever done it - it is a wonderful program designed to take
food to people that are sick]. And we volunteered to
help out at the Linwood country club for a benefit for the
do feel blessed to have so much support. It is touching.
Your sweet compliments, email and prayers are a tremendous help.
Just knowing that you are there is the greatest. We don't really
need anything else now that we can think of [...just if you can help
pass the word for Gina so people sign up for the aerobic-thon,
we'd all be thrilled]. And please keep next
new gal Sandy is very interesting. She gave us her medical
oncologist's name [he is at PA. Hospital which is now joined with Penn -we
did not know that]. Alan found his email address and asked him if he knew
anything about thymic cancer. He actually answered and said he didn't
really know much [which is what they all say]. BUT---he would be glad to do
some research for us
We have found the medical community around the country to be so
compassionate, not that they know what to do for me. But at least they
think and answer. It is incredible how something so small like that, can
foster a little bit more hope - it means someone is still looking for a way.
was a totally draining and upsetting week. Some drs. must have
nazi blood. Today was
he still wasn't
in-no one told us about this poor management system. We were
fuming.The P.A. said they DO tell patients to bring a book to read
.But no one had said a word to us! Why don't they just book
the appt. an hour later. When he came out of the other room, he
asked to look at my films. And then the contradictions began.
He said he WOULD NOT operate on me since the lymph nodes in my chest
look suspicious. He said they are not in the lung with the
masses and he wouldn't be able to get everything. So why do surgery,
he asked? Again, we got
frightened to death. The first surgeon we saw was much better [at
he said that they cut out part of my sternum; I was about to
die on the spot. He'd also remove my thymus gland [THAT IS THE ONLY
PART THAT DID NOT LIGHT UP during the pet scans I have had]. So it
is probably fine. Now hear this - we looked at the scans and I HAVE
NO THYMUS. Most people our age have none. It recedes and
disappears so what is he talking about removing something that isn't
there.This thoracic surgeon thinks he wants to talk over my case
first with several experts before rendering an opinion to us about
what we should do. And he wants a week to research this around the
country - we said fine. Then he adds, "But call me if you don't
hear from me; It may wind up on the corner of my desk and I'll need
nudging." We need this type of medicine, right?
day of shuttling between Jefferson for this opinion
[ we are very confused tonight] and
Chase, was a surprise - much better than we expected and definitely
an improvement over Jeff. Everything pretty much went on time
and the drs. were more considerate adding a speck more of hope.
I had 2 coming in and out [one was a Fellow]. For ex., he said
IF my surgeon could get all the suspicious masses out, or debulk,
they call it, the tumors as much as possible, I'd have a better
chance. In the meantime, they don't know what to do with me
either so they are presenting my file to their tumor board at Fox
Chase to see what opinions are rendered. But they batted around
another round of radiation after surgery, if necessary, or finding a
chemo regime [which is bad news because the types I need are very
this like being called into the principal's office? It is reassuring
that finally some experts are looking into this rare bird. Maybe
that is why I was 'chosen.
and here is a 'Barbie coinkydink'---the examining room they took me
into turned out to be my lucky number, number 16. We had the
head honcho there [that has been there a long time, does the
commercials and ads, and administratively speaking, is at the top].
Rich arranged this. He said there are some phase 1 and 2
trials they could try on me, but he'd prefer the standard regimens,
depending on my biopsy results of course.
The scan shows that the suspicious spots are contained
in the right lung lobes, but that is for now. Who knows what
seeds [if any] they may have sent out that are microscopic.
Fox Chase, we met Adam for breakfast [he lives not far from
there]. We chose the
we got back yesterday, there was an answering machine message from
our new friend Sandy saying if we felt like it to come over and she
was ordering Chinese food. So we did go over and it felt
especially good to have such a peaceful dinner after the last 2
days; she was just too good to us. That was the best
medicine. Her dining room is overlooking the beach and it is
like a picnic but you have the protection of course, of the windows
and walls. We got lo mein. She has good stories and a
great philosophy of life, though she has had her lungs ruined by the
chemo. She lit the Sabbath candles and that brought back some
ANOTHER GOOD OMEN - THEY ARE FAST AND FURIOUS. I forgot to
tell you that when we were leaving Penn Thursday, I felt arms around
me and it turned out it was one of my former student's [Gail]
boyfriend [he works at Penn]. He just happened to bump into
us; I was freaked out how we met in that hallway at that time.
Of all the people and all the times to walk thru that one hall,
there John was when we were there. Totally amazing. He
also was so good to us that it was touching and we started to feel a
lot better after we saw him. He told me if I have NO diet
restrictions after the surgery, he can get me a VIP menu.
I was at
thought the Somers Point bayfest may have been canceled today due to
the weather but by the time we got out of the house at
, it was only
cloudy and we found a parking space. We took a nice walk along
the water, on
of our beach crew was here from
always, thank you for your support and concern. And help. And
especially the prayers. It means the world to us to have help
along those lines. I spoke to my sister's rabbi this morning
and he said I have to visualize myself being cradled in God's arms
well. Live it up and That is an order. Keeping
positive is so important for everyone's immune system. It is
easier said than done, of course.
and every institution reminds us that Thymic carcinomas are very
rare. Most drs. have seen NONE and my surgeon at
Penn has only seen 1 or 2. The drs. all tell us there is
NOT very much published experience with chemotherapy.
this lovely weather day, we were stuck in the whole time,
waiting for the surgeon to call. He emailed us that he'd look
at the PET scan and call to answer our multitude of questions.
I did cut a bouquet of tulips, hyacinths, daffy-dills, and some
redbud to put on the patio in a vase.
are trying to put food in the freezer now so when I come home from
the hospital, we have some good stuff to eat. So today I made
lasagna and some brownies. We are trying to find someone
that would be a big help ---we need someone to make a phone squad to
pass the info around when I am in
We get many emails that say what you did ---about how you know in your heart I will be all better. Every email that sends support and concern is surely a help. My cheerleaders. Each and every one will be unforgettable.
showed a real understanding of our life when you mentioned about
dealing with the day to day problems. Actually we don't.
There aren't any. What used to seem important is so
meaningless now - life takes on a new perspective. Compared to
health, there are no problems. People ask, for ex., how is the
weather. What weather. It wouldn't matter ...rain, snow, if it
were a beach day. We are in all day anyway tackling the
timetable we have for the next 2 weeks. We were outside today
for a half hour, only as far as the portable phone would allow and
couldn't leave the house, waiting for calls from drs. Today also
were the calls for finding nurses and we have lined them up for
the different shifts. But we taking any extra names in
case someone unexpectedly can not make it.
had asked about staying over in Phila. And you know me so well
that you answered exactly how we feel. EVERYONE we know has
offered and it is nice. But we got a driver for last Thurs. and Fri.
and that made it much better. We don't like to stay over
really; the one thing that helps me have a better mental outlook
during this ordeal is being in my own home, around my own things. It
is a comfort compared to a 'functional, cold' hotel without all our
for the offer of help when you come. We will store it and HOPE
we don't need it. Maybe I am in a state of denial these last
few days. But anyway, it is nice to read you are able to help out,
We have been kindly asked but never like to stay at family or friend's overnight and impose. We have had offers from just about everyone we know but are funny that way. We do like to stick to our own routine as much as possible because it makes us both feel like things are more normal, more calm and in control. It would create more anxiety than I need now to have to pack and stay in a strange place. It is bad enough we will have separate 'vacations' the week of surgery - Alan in a hotel and me in the hospital.
Then you asked my opinion of FCCC. I was told a lot of negative things about it - mainly that the problem with FCCC and the others [like you said...Sloan] is you have to get a lot of opinions. Each center tries to push people into the protocols that bring money into the institution we were told, since that is how the organization stays solvent. We heard [from professionals - doctors, hospital administrators, etc.] that whether it fits the patient or not, the cancer centers put them in a program and their disease is irrelevant. They have to fill the program with 'bodies.' Or the institution loses money. For example, if you don't fill up your biochem class with bodies, you have no class to teach, and soon you don't have a job.
We took it as our task to have to learn how to sort out the hype and get quality care. That meant months of research. We have thus far had A VERY POSITIVE EXPERIENCE AT FCCC. The drs. we saw were exemplary. They were not like used the car salesmen we expected.
An old friend of mine doesn't like Fox Chase. She found they don't treat people like patients but are surly to them. She went for a dr. visit there [ cancer follow-up] and the registration desk in the lobby has "2 'psychos'" working there she said. She took a number, waited, got to the 'psycho' and the lady looked up her appointment on the computer, couldn't find it, told her to go have her dr. call in, and sent her to the end of the line. My friend called the dr. and he said he put her into the computer; my friend waited, got to the psycho and the exact same thing happened. After the 3rd time, she said to call up to the dr. she had the appointment with and explain why she was late and being detained. We found a way of pre-registering so we can avoid that scene. My friend said the lobby is always mobbed with the sickest people and not enough chairs, for starters.
Sloan - is the same, we hear. But no one up there WILL see me. Remember last year, no one had any expertise. No one knows much about thymic cancer since it is so rare. Our friend's sister is works at Sloan and she took my records from dept. to dept. and they said no one up there was able to treat thymic cancer. There are not even trials by the NIH - they are basing the current explanation of my CAT scans on the pattern of spread ... it is from where I had it before in my neck to down to the lungs.
emails used to be so light compared to this stuff.
said if the surgeon thinks from the biopsy report I will need
radiation afterwards as opposed to a chemo regimen, I should stay
with Dr. Cassir [which was of course music to my ears]. Not
that I want to go thru that again, but it is better here than
driving 4 hours each day. That impressed us a great deal because we
heard how FCCC likes to keep people within their own system [for the
lives are nothing like yours these days. It is good you got another
vacation in. We never expected this so soon. Our nerves are shot.
that is one BIG way you could be a help.
The date of the Aerobic-THon is July 12th and fast approaching and I will
be out of it for a while and won't be able to do the reminders that I had
planned to do. If you could encourage any and all people to get on line
and register for it [they can pay with a charge or send a check]. I was
extremely disappointed and felt let down when I looked at the registration
forms, that NO ONE from the beach had signed up. This is how people can
help - it is the only thing I can think of and that I want. There is a
maximum we will be able to have since the fitness center has a set capacity.
moments. Just do it...it is always something that can be undone if it is
wrong. There isn't much that isn't fixable, right?
seems that as the surgery gets closer, my questions increase in
direct proportion. Luckily this dr. has been so gracious in
answering each email we send.
know how grateful we are that you all are rooting for us every
single day. And we appreciate the prayers, more than we
can express. And also your good wishes for an easy time
of it. Most people have been like you...so amazing. Then
there are others, like ______ who called today and could only
talk about the weather and seeing shows. It is if her life
depends on it being nice outside so she can do certain activities.
Fine, but there are plenty of things to do inside too. People
don't understand how little importance weather is to someone in my
mental state right now since much of what I have to do each day is
inside and determining my very existence. I appreciate going
out for a nice walk but if I can't because it is nasty, so what. But
her life ends for her if she can't.
had your ESP hat on today; we took a little bike ride to the
Point...the end of the island [I like to say the end of the earth].
It is only 20 blocks from here. Did I tell you that Longport starts
we got out the suitcases; I really didn't want to start that.
It always takes me a while to pack [I hate to forget anything].
between we have a master list of things to do or take for next
Major was we have been comparing these chemo sensitivity companies and it
is very confusing. What they do is grow your tissue from your surgery in a
Petri dish - if they can [30% chance]. Then they add chemo drugs to it.
Seems they get conflicting results since it is done in vitro [a Petri dish]
as opposed to in vivo [in the body]. What drs. seem to say is that if a
drug comes up as resistant, it may not necessarily be so and may be the one
that could be used. And it may work. But it the drug comes up toxic then
that also may not mean it will kill the malignant cells either. The drs.
say by following the test, the proper course of treatment may be placed aside and the patient given one that doesn't work and could kill them. It is a heavy decision whether we have the test or not. And we have to pay for it and it is not a set price; Though we aren't bound by it but it could bias an oncologist.
other afternoon, we volunteered to help out at the
Linwood country club for a benefit for the
friend of my sister's called today, Sheryl [the stupid
psychologist], and she starts off the conversation with the
cheeriest "how are you?" as if we all just won the
lottery. It made me sick. I knew she was playing some
We can check tomorrow and be sure the tearoom will be serving on Wed. and if so we'll meet there. It is so restful and peaceful. Like going back in time to a different era.
You are funny - tea they are now saying, is sooooo good for your immune system. And I could care less about my cholesterol anymore - a lot of good it did to watch it for 35 years! It pains me to think of all the hot fudge sundaes and whoppers I DID NOT eat because 'they' promised me the BIG ONE! No wonder they call it 'practice.'
you are right - today was too damp to walk or ride outside.
The chill cut right through you. So we took a ride down the coast,
south, to see some of the little beach towns. We felt like we
had to get out of the house ---which we usually never feel.
Needless, to say, Alan is not able to concentrate on any writing
these days and his newest novel is not far along.
are trying to stay positive until the surgeon tells us what he saw
took out]. But we appreciate your vote of confidence and cheerleading
spirit. The PUSH method sounds wonderful. The prayers are just what we
need now. It has to work...like it did last year.There aren't words to
express how grateful we are at what may seem like a simple act; it actually
helps me to gather my inner strength at this difficult time to know others
are rooting for me too.
Though last year, to say the least, the operation was traumatic and the
whole week long hospital experience became indelibly burned into my brain, I
am working hard to keep upbeat and hope this will be better. But above
all else, it would be our wish that I don't have to go through this again.
Not having healed from the last year of surgery and radiation therapy, we
thought I'd get some respite and have time to get back to normal a little
We took a very brief walk over at
Saturday - we had to get out of the house [it felt like the walls were
closing us in]. Each year it gets worse and worse over there - it was
actually boring. Because there is nothing to buy since most of the stands
sell the SAME crafts [all home made looking - sticks for the lawn, wreaths,
how many does one household need if any].
this is like a war. Each episode is another battle but I
intend to give Death a good kick in the ass. These invading
cells deserve the death penalty for what they have done to me.
I have a good 'cheerleader' up on the
We know that this last month's news was not what anyone wanted to here, AGAIN. And we thank the many people out there who love us, for keeping us in your thoughts and prayers. Your very loud voice may bring us the miracle we need.
be out of touch for a while starting this weekend when we go up to
PHila. FOR my May 12th lung surgery. We are trying to
get together a phone squad so people will be able to
hear what is happening.
For your information , Alan will be staying at The Inn at Penn [3600
The Hospital main number is:
patient info. 662-3908
Please, please know that you have done so much to help us already through this past year & all we really need now are prayers. We have everything else that is required. So you do not have to send anything but if you feel the urge and can not resist, go to www.thymic.org and see the various ways to support our Foundation.
example, the date of the Aerobic-THon is July 12th : it would
cheer me to have Alan print out a lot of registrations. Better
than cards, chocolate or flowers. Really.
This is how people can help - it is the only thing I can think of and that I want. We have everything else.
are also really lucky at all the offers of help. But it will
be just prayers and mental support at this point. We had a ton
of chocolate delivered to us this week so if you hear these
people say they want to send something, PLEASE say All we are asking
people is see the various ways to support our Foundation on line.
And to pass it on to their entire address book
week is going too fast. We both had to get haircuts so that was on
today's list. And we took a walk along
A lot of people said what you said about that idiot Sheryl and her comment on Sunday. Alan said that when you go through something like this, you really can get a look into people's souls and into their heart and see what kind of person they really are. He is so right. Brilliant.
As you say, may Monday turn out to be the proverbial piece of cake. I hate to get my hopes up too high because then it is further to fall when you are let down and the depression is harder to combat. I used to be such an optimist.
You had tons of great lines the last year. I use them for other people and hope it helps them as it helped me.
we went with one of our dear friends [Allison who is on the oldies
radio here every day ] for a peaceful interlude. She got reservations at
a Tearoom in
thing to do, beside being very very calming and relaxing. She knew exactly
the right 'medicine ' I needed. We have been planning to get together for
months; her schedule finally improved. She went from early mornings to mid
day. And she promised to help us with the big Foundation luncheon next
April 18th [like on-air promotions].
a lot of other annoying comments, ______ had the nerve to
say to me, "Well, tell me---ahhh, I don't know how to ask you
this and don't take it the wrong way but you haven't given up hope
yet, have you. " He continued
[until I got Alan to take over the phone] with comments like,
"I can sense that you need to talk to someone."
were more comments that you'd just go crazy over. He wanted to take
us out for dinner - I said no [he said 'every condemned man
needs a last meal].
we heard two more horror stories about drs. down here. One
lady had some blood tests at
fellow saw 5 drs. [which is way too many] here about his ear pain
and sudden deafness and they said it was a virus. He had
enough so Wednesday he went up to PENN. It is not his ears -
it is a neurological problem and he was mis-treated and should be
That is so so sweet of you to offer to bring meals; that won't be necessary, I am sure. But thank you. I have 4 weeks of meals in the freezer so I could feed the whole town at this point. But if we need anything, I will let you know. You won't have to drive to Longport. There are so many people here - many just came up from FL. to be here when we get back from PENN. We are really lucky at all the offers of help. But it will be just prayers and mental support at this point. All we are asking people is see the various ways to support our Foundation on line.