Having taught so many -ologies, I agree with you about the body. I find it amazing more isn't wrong with us. The body is so complex and most of it can't be duplicated in a lab. It makes you wonder. How does it know [...to make cells, to make insulin, to make hormones ---and the correct amount at the correct time---and on it goes].
A friend in Phila. made me think. She said all life here is temporary. But
since matter is neither created or destroyed [and we are matter], at some
point 'we' turn up again - even if it is just the organic matter of our
physical body. Profound.
Thank you for thinking of me; it is nice to have a moral infusion from as
many people as possible.
Round 3 went well, she-devil and all. She hung around the room but had no
actual business on my body. The doctors were the only ones I let do any
I am getting internal radiation now and had my 3rd infusion yesterday at
Hahnemann. They brought the injection in a lead container and it was dripped
into my vein I.V. Well, yesterday before they started releasing the third and
final I.V. bag into my vein [for this protocol], I asked if they could go over
me with the Geiger counter. The doctor operating it didn't know where my
cancer was and the majority of people getting the radioactive monoclonal
antibody infusions have brain tumors. So she said she didn't think the Geiger
counter would pick up the substance in my brain.
That is when I told her to please scan my chest because that is where my
tumors are. She was surprised and scanned. The counter beeped wildly. Anywhere
else in my body, like my legs, it did not beep.
This was good news ---at least the substance has been attracted to the
right part of my body. Like magic. We are praying it is attacking the tumor
cells and they'll die a sudden death.
The doctors were the only ones I let do any procedural parts. It has been a
cumulative affect which has left me exhausted. In 3 weeks I will have ONLY a
CT scan; the dr. [at my urging] said this time I could take a vacation from
the PET scan [WHEW!]. He will compare the CT from this past time with the new
one. I told him how bad the tech was to me and that was a help.
As if I didn't have enough on my plate, the radiation oncologist from here
wanted me to have an M.R.I.. of the brain. Alan told him my hands tremble
sometimes. What Alan forgot to tell him is that high doses of neurontin can do
that, as per the neurologist last week. Well I sure panicked because he
suspected a brain metastases and there is no way I can lay on my back for one
hour in those scans. It got complicated. His nurse made the appointment for
YESTERDAY MORNING and of course we were in Phila. Alan told her where and when
we had to be; she didn't absorb it. So the imaging place called to day to find
out where I was. What a mix up.
Like you said, we'll always be in battle mode. Our generals like to call us
in often to check the enemy.
As for the coughing, it is more than annoying - I get very depressed, at the times I can't stop and start to gag. Today, for some reason was decent but
at night it is worse. The spray helps at the moment but the next day my throat is so dry I cough more. Can't win.
Today in addition to being so tired, I was dizzy almost all of the day. I felt the same way after the external radiation.The waste by - products of dead cells are toxic to the body. SO I hoping a lot of evil cells are dead. Maybe the isotope and antibody are doing their job, let's hope. I felt the same way after the external radiation.The waste by products of dead cells are toxic to the body. SO I hoping a lot of evil cells are dead. Death to cancer.
Can't touch food or be near kids [so it is great in stores; you should see
me as they get close to me...ha haa].
We managed to go to Shoprite and get a week's worth of food. We barbequed
rib steaks for dinner and I put on some other meals to freeze and have another
time. I like to have lots in the freezer for days I can't get it together.
Thanks so much for sending the good thoughts and again, for calling. I just don't last too long on the phone these days. I would love to talk on the phone as it was always my favorite past time but am so hoarse most of the day. It is too painful to force and that starts me coughing. The oncologist thinks I should see an ENT...just what I need, another doctor. It is more frightening than anything else because we wonder what it all means. I am putting it off - my dance card is full.
There are a few people I know that make me repeat a lot [like older older
people] and it is hard enough to get it out the first time. Then some make
me explain something over and over because they don't have any dealings with cancer and are clueless as to the terminology, so that makes it doubly hard
. I could have emailed it already, Email is much much easier for me with them.
That is so important. I am always telling people to enjoy each day and not do things they don't want to do. Don't spend time with people you don't want to, etc. It was good to read you re-did the percentages. Most don't understand; it is a special pleasure though to see someone change. Our neighbors had dallied for 3 years before they built the house here - they were trying to make it so perfect [on paper]. After Alan gave them our chilling news, they broke ground a month later. She said how could they justify wasting anymore time.
We are not getting flu shots. My grandmother had one in 1978 and died in
her sleep that night. My sister and I decided we wouldn't get them after that.
So, what did I do; I had one in 2001 after all the t.v. hype. And what
happened? I My cancer was diagnosed shortly after.
My sister's Rabbi called me the other day. I played "stump the
rabbi." I asked him how we get our bodies back to the pre-cancer mode [he
has leukemia]. We all know 20 years ago none of us had this crap. SO how do we
get our biochemistry to revert back to that time. There isn't much he can't
answer but I got silence on the other end. Maybe he'll have a consult with
some other colleagues.
Then I hope to start Iressa, an oral chemo. It is not covered by insurance AT $70.00 PER PILL so I need to fight this one if I can. The oncologist needs to write a letter on my behalf and she is acting very strangely lately. I think she only wants to do what benefits Penn [you know, like billable hours]. At Penn they give the toxic 8 hour I.V. chemo; to write a prescription doesn't benefit her. I may have to fire her, we are realizing. But it could save my life so I may end up paying for it. Cancer is the disease that keeps on taking. You can save your whole life and this could wipe it all out.
Thanks for asking about the cardiologist - they said the Doppler's of the
carotids seem fine for someone my age, they clarify. In the echocardiogram, it
shows I have always had mitral valve prolapse so that is no surprise.
Considering my cholesterol , it is something they didn't find Crisco in
We haven't figured out how to place the air cleaner near the computer so it
sucks out the air. The air cleaner probably needs a few cycles in each room to
get out the particles.
Thank you for writing about the protonix. It reminded me that the drs.
[plural] prescribed for me prilosec and I sloughed off taking it. It was for
my hiatal hernia and sore throat from the first surgery. I started the other
day and it helps the cough for about 12 hours. Who can figure it out - there
is so much in that area and it all works together.
You had a different view at looking at how doctors see us - never thought
of it that way. I can see now that they need to see people survive. One of
this drs. techs did tell me he doesn't like to be around people that are down.
We got a call and then I got an email from the med. onc. saying I'd have to COME IN first and sign the consent form. She said she needs me to make an appointment to do that IN PERSON [and drive 4 hours]. I don't think so. The time spent in stalling meant the process would take much longer. We were just there a couple weeks ago.
I asked if it could be faxed. Absolutely not. She further told ALan she
doesn't know if there are any toxic effects left from the infusions that might
affect the Iressa. He told her Dr.Brady said 3 weeks was enough time to clear
out. She said to have him call her. I guess when hell freezes over. Dr. Brady
does not like her way of practice.
I will find a new oncologist because we do not get this at all. I have a
local medical oncologist and we called her and she is looking into how to
This all is a full time job. Drs. visits continue. Today was --- I don't
know what word to use. We next went over to Dr. Cassir [the radiation
oncologist that gave me the radiation in 2002] - I need my neck checked every
so often by him and he reads the recent PET and CT scans with a fine tooth
We gleaned a lot of info from him. First he felt that the radiologists at A.M.I. over stated the findings and he saw the progression of the disease but he felt that the older tumors weren't so different that warranted the use of some of the terminology they use. He feels if he gets in there, he can radiate the current growths. They are all near each other. The last radiation has lasted quite well.
We know it is not a cure. Just spot treatment. He said other drs. would say
it is palliative measures but then again, anything I do we realized, is
there is no known protocol. The chemo's can't even guarantee they'd wipe out the current tumors. He said I am the only ectopic thymic case he has had and will probably ever see. He said to run this by the other drs. But to go thru that again ...we'll see. So we are confused which path to go.
He called surprisingly later tonight and told Alan he had a meeting after
we left with some Penn drs. [2 thoracic surgeons that used to be at Jeff and
saw one last year for a 2nd opinion]. Shore Memorial is in the Penn network. He went over my case with them and they agree with the radiation path. And the one I saw said my name seemed familiar. Do you remember that story.
So the new road my be another infusion cycle if it is working, radiation to clean up any mess, Iressa and then...I better not need 'and then.'
Are you ready for battle mode again. Ha - like we ever left. Any
alternative to the linear accelerator would be welcome. If by some small
chance this cough is related to the radiation and scar tissue forming and
pressing, then I can't imagine another hit in the same area.
We thought my scans in 2 weeks would tell about the infusions but dr. Cassir said it could keep working for 4-8 weeks afterwards since some of the tumors are larger and will take some time to be dissolved [if they will be].
The local oncologist already is filling in the paperwork for pre-cert. with
the insurance company WITH NO CONSENT FORM. Isn't that interesting. Like a
sorority initiation - get poisoned and if you survive, then you get the better
stuff. Even though the chemo doesn't work but there are no studies because
they just aren't done on our tiny group. This is maddening. Even though it
doesn't work but there are no studies because they just aren't done on our
tiny group. This is maddening.
Then we made an appointment with another oncologist at Penn [recommended by
several]. Separate practice. Coincidentally, he is Evans' superior. At this
point I don't care. If we don't like him we'll go elsewhere. He is off to a
good start though - he emailed Alan back and forth. His sect'y did say that
she is requesting my file from Evans and Kaiser. Routine there.
My neck is the same; the radiation has to fry to kill the cells. I have physical therapy to do on it every day. If I slough off, then it hurts really bad. I have lost weight too, from coughing all day and night, I am sure.
It is normal to be depressed. Cancer is the worst nightmare. Except it is
vivid day and night. I got Zoloft for it and valium for anxiety which I
vacillate from each. I spoke to a neighbor that was treated for lymphoma last
year. Her dr. told her too she is depressed and wrote a RX but she refuses to
take it. She said she'll overcome it on her own. I argued a while and decided
it is not worth using my voice. I told her it is a biochemical deficiency and
maybe our disease or treatment aggravates it and to take the pills and stop
complaining. All she does is whine about it. There is no way to 'overcome' it,
I don't think. I think it is a lack of serotonin in the brain.
They can see your vocal cords. Like you [we must be twins] my voice is
worse than it used to be. It could be scar tissue pressing on the vocal cords.
One dr. told me it is the tumors. She said to see an ENT. I am just so
fatigued from visits, tests, infusions, fighting on the phone with insurances,
that I have no time on my dance card left. And I definitely do not want every
day of the week to center around cancer for Alan. We need vacations from it.
Eventually, when I can think straight, I'll make an appointment. When you get
this, you have to work round the clock on it to beat it. But you need to clear
your head too, once in a while. Some appointments have to take a back seat.
It is not a feeling of lonely but a feeling that I am in an abyss at times.
There are no words to explain it - like, the walls closing in and at the same
time I am incredibly sad and frightened. No dr. has ever given me a time frame
or prognosis [by all standards, so I have been left in limbo. If I keep busy,
I don't think as much. At night it is the worst and as I wake up. If I had had
my first surgery and then the radiation, then had a break from all this, It
would have been easier to take. But it has now been 3 years with no breather.
You described it all so well - living in a body that has a conflict going on. You really start to see that everything here is temporary. I find it amazing more isn't wrong with us. The body is so complex and most of it can't be duplicated in a lab. It makes you wonder. How does it know [to make cells, to make insulin, to make hormones ---and the correct amount at the correct time---and on it goes].
I am always telling people to enjoy each day and not do things they don't
want to do. Don't spend time with people you don't want to, etc. Most don't
understand; it is a special pleasure though to see someone change. So at some
point it is either the tears, that flowed thru on this letter or doing
something to break the awful chain.
This is something that just was researched. Maybe now I don't want iressa! Surprise. I am no longer mad at the other oncologist for not doing the work for it. Because we would not have wound up at the local oncologist if she hadn't acted that way. For the last couple years, the local onc. hasn't brought any ideas to the table. Now the other one isn't bringing anything to the table. It is like a horse race. The local one is thinking out of the box with this C-KIT test. And we are so happy about it. It is fairly recent.
The local oncologist mentioned that Gleevec is being tried for other
cancers. If you have a positive C-KIT test, you stand a chance of trying the
drug [oral]. Pretty recent marker. Anyway, how does one get tested? She will
call where my last surgery was, have them retrieve the histology block, and
they hopefully can do the test on that. Is this amazing. She is from Phila.,
went to Girl's high in the 60's and has a lot to offer since her time is not
taken up, like the doc in the big institution.
As always thank you for your good, good wishes...as of Friday, when we
called Penn to give permission to retrieve my pathology block, the dr. had not
called yet to order the test. We sent her a fax with a gentle reminder and
tomorrow we will call her office. It is toooo important to let it just ride;
you really have to be up on your own health care or you can slide thru the
cracks unfortunately. You need the patience of a saint to get thru this.
C-Kit stands for something particular on the tumor cell. Alan can explain it well. A number of recent studies have shown that KIT (CD117) is frequently overexpressed in thymic carcinomas but not in thymomas. In trying to determine my next course of therapy, our local oncologist, has initiated a c-kit test on my tissue. The paraffin block of my specimen needs to be retrieved by pathology. So at least that test is virtually non-invasive at this point.
If the test shows that it is expressed, then she may consider prescribing
for me, a course of Gleevec. It seems to be on some cancer cells and not
others. Probably it is a protein substance [maybe in the form of an antigen or
antibody]. It has been found recently that a good percentage of thymic
carcinomas DO have it! So if I come out positive maybe the gleevec is a more
humane treatment. Ryan O'Neal is on it.
I was not on the computer yesterday. I coughed so hard at one point, I hurt
my back terribly [I actually saw stars and blinding light]. I just could not
find a place for myself - sitting, laying, standing. Then it got worse, the
pain traveling down my leg, behind my knee, etc. I was scared and just so fed
up at that point. Interesting, though, not being on the computer, I had much
less choking at night. Something is up with this darned technology.
Alan's birthday was Friday and I got a lovely cake. Art and Marcie came
over but after a half hour, I had a bad coughing spell so they left.
Forgot to tell you that I saw the neurologist about my trigeminal neuralgia
and he reinforced that it was good that I kept a high dose of the medicine
from the beginning. Now if I feel brave I can start to taper down but not too
fast he said.
The problem with this particular type of cancer is no research has been
done on it and what they have tried on others and myself, doesn't work. It is
a tough cell type to kill. We have to find 'its' weak point - and give these
little bastards a trip to hell. I have fought lesser enemies myself
[non-medical foes] and though this time, I have the best experts to be
generals, 'it' is a formidable enemy.
You said it all - one gets weary of this trek very quickly. If it isn't one
thing, it is another.
Thank you for the healing vibes. SO it seems as if everyone that has been
pulling for me has made a difference. I think being on ibuprophen and aspirin
products has lessened the cough some. Isn't that interesting.
Alan appreciates the birthday wishes.
Despite my back and leg pain, we still had to go up today to Jenkintown for the dentist. I can't sit long so the 2 hour ride each way was brutal. Lots of traffic. Once on 95 we stopped the car and sat in one spot for 20 minutes. I hate that. The dentist was pleased with our x-rays, etc. So that was nice to hear. Now I can't sit long. I am best standing or laying flat. I guess in time this will heal. The last few nights I couldn't even sit and watch TV with Alan - I was up and down every few minutes.
Here I am, sitting at the computer, much longer than last night. Progress! I'm on a lot of stuff but at least I can sit. So your vibes helped again. You have a knack. Better yet...a gift!
A brand new Shoprite opened today - gleaming and larger aisles and so many
more products. They have been building it next to the old one for a year now.
The best thing they have is when you come in the door, they have tubs of
disinfectant wipes and they say to wipe your cart handle, etc. I loved it.
I've been advocating this for years.
We just came back from a Halloween party at a friend's condo building. It is right on the ocean so it was nice walking outside on the deck every so often to see the ocean and cool off ---it was a warm room. But good food and a lot of nice people to talk to.
As we write, they are doing a C-KIT test [the initials of course stand for some big words] on my tissue in a paraffin block...tissue taken out during my lung surgery in May, 2003. We aren't sure how long the study takes to do. We were relieved to hear they could use that and did not need fresh tissue. That would be too hard to get since the tumors are behind my sternum and to get to them they'd have to ax it open.
This first weekend in November at the Taj Mahal Casino in Atlantic City,
there is going to be a daytime actors' luncheon - it started from our affair.
The agent that got us the actors and the representative from the Taj are
planning it, and this time they both will make money. Our event was all for
The agent who got the actors for us is giving us tickets. Mainly because we
put the 2 parties together, this serves as a thank you. Now she will make
money from it; from our event, she did not even take her usual commission.
Such good kind-hearted people trying to help us all.
A bit stressed out now; I hope the news is good tomorrow. I go at 1:30 to be scanned.
Today is tough. I had my 2 month scans and now we wait. I hope by Friday we have some news. It will tell if the infusions at Hahnemann did anything. Probably we will have to wait till next week for a few other drs. to look at the actual films.
Most days when we don't have medical things to do, we try to take a short
ride at a beach community [usually we stay within an hour of our house so that
encompasses a lot of towns north and south of our house and each has a
different flavor]. It is what we like to call 'island hopping.' We love
looking at water - ocean, bay, beaches, bridges, harbors...all of it. We like
to find a bakery and bring a treat back [we are anti-Atkins diet]. Or walk on
a boardwalk [if it is concrete it is a promenade...la dee dah].
We aren't total hermits. Last night we went to a friends for his 60th
birthday I do have a bottle of Jagermeister but it burns my throat for a day
after I try it. Then I cough more. The drs. did say to avoid alcohol since it
is drying on an already dry tissue.
The local oncologist made clear a lot of theories - one, whether you have
radiation or chemo, the problem is these demon cancer cells, mutate AFTER the
treatment and that is why they start growing again. For example, my lung
cancer was not totally the same profile as my first neck cancer. It mutated.
Takes smart researchers to keep outpacing them.
The CT scanner they used was ultra fast; it was so much better than the
looong PET scan. The tech inserted the I.V. kit in my vein and did a good job.
Of course he got it the first time. He enjoyed the Hahnemann story.
The first area they did is my chest and lungs and it took 10 seconds and 18
seconds, for each set of films. They DID NOT strap me in and I did not even
have time to cough. Then they did my head and neck which took about 1-2
minutes. It will tell if the infusions at Hahnemann did anything.
From that room I went into the mammy-o-gram room and I waited till the dr.
read them; she said I was fine. I asked her if she can give me the same report
on my CT scans. Wouldn't that be wonderful...well, I can dream, can't I.
I think the contrast dye makes me tired; I noticed this before. Signing
Dr. Check was the only one who called and said there were some new tumors [now my right lung] and some tumors had grown and some had stayed the same. A.M.I does not know my treatment regime and is biased as to the diagnosis. We come up to Phila. on Tuesday. So I guess if the infusions had worked there shouldn't be anything new.
Not only is this all disgusting to hear but last night as my back was
starting to ease up a smidge, I coughed and it is worse that ever. Now the
pain is so bad that I can not stand more that a few steps. Couldn't sleep -
couldn't find a place for myself. Well, I know you have been thru that. I am
taking Excedrin and coated aspirins [not great but will see the dr. MOn.].
I have so much physical and mental pain. We are stressed out.
Thanks for the compliment on our stash of medical info - we strongly
believe you have to take your health care into your own hands. Especially with
something rare. The Foundation gets letters many days of the week, getting new
patients from all over. Yesterday Alan got an email from a dr. in a hospital
in upstate N.Y. that got a thymic patient and they asked us who was the expert
in this. The patient wants the best so we said to try Dr. Loehrer in Indiana.
He is a board member now so there is information on him on the website
This seems like the way cancer treatment should go - targeting an aspect of
the cancer cell rather than killing healthy and cancerous cells both.
We voted Democrat too. That is a family thing - your Grandpop Marty was a
committeeman when we lived in Mayfair and worked hard for the party.
I had hoped by Sun. we could go to the Taj. Mahal in Atlantic City, a daytime actors' luncheon. But I can't even walk without bending over. SO I doubt anything will change by tomorrow.
We feel like we are in a tennis match with the doctors bouncing us back and
forth with what we should do next. It is all so maddening - radiation
oncologists want to radiate my chest and medical oncologists want to give me
toxic chemos. All because no one really knows what to do since they have no
statistics on what will work
I am absorbing your healing vibes many times a day. I really need them. I
was so down yesterday and today. The scan DOES show tumors. ANd my disk must
be herniated since I can't stand up for more that a few seconds. The dr.
ordered me a pain pill with narcotic so I slept off and on last night. And I
have an appointment with an orthopedist on Monday; something I tried to avoid
but now I can't stand without pain . I can't prepare any meals or do anything
other than lay on the sofa all day. Thanks for mindless TV.
This is not me at all. We don't think I can go to my beloved event tomorrow
unless a miracle happens over night. There would be no way for me to get to
the casino from the parking lot.
We were so disappointed not to be able to make it today; that was worse than the pain from the ruptured disk [at least that is what I hope it is and not the tumors pressing on anything] because I had looked so forward to it. My back and leg are so bad that I can not stand more than walking a few steps.
I had just started to heal from a bad coughing spell 2 weeks ago and the
other evening, when I coughed, the pain was excruciating. No one can really
tell us why I am coughing so much - it could be as a result of the surgeries
and radiation or it could be the tumors are pressing on an area that makes me
cough. We have been trying to get answers and are starting to get really
frightened. It all hit us today when we realized that this prevented us from
doing something we wanted to do.
SO we couldn't go and I was really feeling sorry for myself, seeing that
this disease kept me from doing something I had wanted to. One of the actors
did call us when he got back to N.Y.C. to see how I was and we were so
touched...........beyond words. A small gesture can mean so much.
Not a pleasant visit - the x-rays he took aren't too revealing. He said given my history I should schedule a bone scan. He wants me to have a bone scan to rule out bone metastases which can happen with thymic carcinoma. Very depressed. Will see what the drs. in Phila. say tomorrow. He felt it best not to mince words ---he said there are 2 choices. But maybe it is only a torn muscle [we pray].
You are right about doctors not having all the means firing many along the way. We just did that today. We got rid of the oncologist I told you about in the last email and selected a new medical oncologist and it is like a breath of fresh air. It is not easy starting over each time but to get the best care, it is often necessary. Hope it lasts.
This new team has many pluses ---the dr. had read up on our website of all
our board members, events and even stories on the patient forum. Plus he knew
by heart the 4 inch file on me - a very thick file from 3 years till now. Now
that is impressive. It may not change the diagnosis or path - It may not
change the course of my disease or the path of treatment, but we feel so much
better with this group. We feel more confident about the care now. His nurse
and other residents were compassionate and said how they are there to take
care of the many things the other dr. made us do.
They say we have been through enough, just dealing with the disease, that
we shouldn't have to worry about the bullshit she put on us. For example, once
we drove 2 hours for my appointment and she didn't stay for it. Her office
procedures are poor. Recently she suggested I go on Iressa [a fairly new chemo
oral pill] but refused to help write the pre-certification for it with the
The best a person can do is find the dr. they feel the most comfortable
with, even if. It may not change the diagnosis or path but we feel more
confident about the care now. They will handle insurance pre-cert. and find
pharmaceutical companies that assist patients that are rejected from their
insurance company, etc. I almost cried at one point at all the services from
this new group. They had smiles for us and spent 2 hours!
Today we had a few other drs. in Phila. look at the actual films. Except
for the imaging place's report, which was that there were more new tumors, we
hadn't had an expert look at the films. They all want me to stay on the
mefipristone. They want to give the radioactive monoclonal antibody infusions
a few more weeks to KILL, KILL, KILL. So for the time being, my job is to try
anyway mentally that I can to suppress the bastard cells. If I can keep that
up, then it is a help. Then I need to get that PET scan at the end of
December. Then we'll see how the old and new tumors are doing. And what I'll
need to do from there. .At least it gives me 4 free weeks. So
the gift of a month or so without any treatments gave me some motivation.
The drs. in Phila. say instead of a bone scan, I should have an M.R.I. and
first see if it is a disk that herniated and is pressing on a nerve.
They are all semi-baffled at how the influx of Excedrin controls a good
percentage of my cough. Makes you wonder if it is inflammatory.
Sleep has been tough - the pain keeps me semi-awake all night. Can't get comfortable. Can't wait to be able to stand again. Can't cook, clean, wash, shop - Alan is a gem.
We are always touched that you took the time to offer. You are always there for us. Thanks for packing your email with prayers. I need all the help I can get. I was in a fog all week and only went out to go to drs. Blah! Luckily I had a lot of paperwork and computer work I could do sitting down.
It is not an exact science; that is why they call it practice! Many people
have told me "they're not God" and She can work miracles.
If I went a few steps there was pain so great it brought tears.
Today I had an M.R.I. and it will be to see if it is a disk that herniated and is pressing on a nerve. At this Diagnostic center, they have one you can SIT in - that is a big help. I was not flat on my back, so the coughing was controlled during the test. It is half the time also. They put on "Regis and Kelley" on a large flat screen t.v. and in 20 minutes they said I did well and was done. So it remains to be seen how the quality is of this scan.
SO NOW WE WAIT FOR RESULTS. I called the orthopedists' nurse to say I had
the test and to call when he gets the report. She said I have to make an
appointment and come in to get them. No results are given over the phone. NO
exceptions. You know how livid I was. I have bigger drs. than this local snit
that call all the time ---or email my results. More bull shit. If drs. keep
doing this, health insurance will go out the roof, as if it hadn't already. I
WILL get them over the phone, you can bet on that. I just can't help myself in
Anyway, I put my thinking cap on and I am wondering if some tumor areas
look bigger on my scans than before but in reality they are just filled with
the remnants of dead tumor, IF the radioimmune monoclonal antibody did its
job. The area would be packed with white cells and other immune cells,
cleaning up the debris from the nuclear war within. So on a scan, it is the
tumor surrounded by the troops???????????????? Makes sense to me - but what do
I know...I am only a biology teacher. I go thru these denial stages from time
Next time I see the new onc. I will ask him about that theory.
We actually made it out to dinner last night. For my natal day. My friend
made reservations 6 months ago for us at the cooking school [A.C.C.C.
college's] Careme's restaurant. It is special - the students are graded so
they treat guests like a king and queen. I can't believe we were able to go.
As long as I sat ---the hard part was walking from the car to the restaurant.
It was a bit far since they are on a pedestrian walkway and Alan couldn't get
the car closer.
I agree with you 100%. It is so important; I tell all my drs. that before
the Foundation I had no one to talk to. I can understand your screaming spell;
how can anyone with this disease not lash out once in a while. It is hard to
hold it in, as the years go on and the toll is taken. The pain just wears you
down till you don't know what you are saying or doing.
Our 38th anniversary is Saturday. But ALan makes it like each day is our anniversary. After all we have been through, this is a special one. Tonight friends had us over to their house for dinner.
SO you asked if it is a good day - the day I opened your email wasn't so
hot but today I was able to go for a short ride in the car so that is
Today we went over to the imaging center and picked up an actual copy of
the report with a set of films. I said I need them to take to my dr. in PHila.
Simple. It shows I have herniated or bulging disks in each lumbar sacral
vertebra. Well, it is better than cancer, if that is one way to look at it. So
a muscle relaxer probably won't help in this case. Now I faxed the results to
each of my drs. and we are getting medical opinions on what to do. BUT we have
NOT heard from the orthopedist. If I have energy I will make fur fly.
Relaxation - yes, Alan goes out once or twice a week to ride his
motorcycle. He always comes back rejuvenated while I get wound up in knots [I
worry so much about him on it - but try not to think about it if I can].
What are you doing Thanksgiving. We aren't sure but we were invited to my sister's and also to Sherry and Neal's. We aren't sure if my back is up to 4 hours in the car. It really doesn't seem like I should risk all that jostling around.
Sorry my voice gave out. It is a hint to me...If I push, then I start the coughing, and I try to avoid that more than anything else. It is more than annoying - I get very depressed, because at times I can't stop and start to gag. But worse - I don't want to herniate any more disks that way.
Here is what the new medical oncologist wrote to us:
"It was great to finally meet you and Alan. I am truly amazed what you have done in the face of your disease, but I'm sure you have been doing things like that your whole life. I'm thankful that there are people like you and Alan in the world... being able to accomplish daunting tasks and unite people the way that you have.
I also enjoyed the Neibauer website - again amazed at the productivity!
Barbara, it will be my privilege to be involved in your care, and I look
forward to your next visit. Please call us if you have any questions or
problems in the meantime, and have a great season."
We appreciated your good thoughts and prayers. And especially the open offer of help. For now I am okay - I got very good 'funny bone' genes - my great-grandfather was Sliding Billy Watson [a vaudeville star in 1905 - he gave W.C.Fields his first job]. Thankfully, I am not dejected [my disks are easing up and I am walking well again, thank God].
In fact we now have a new hope. Thanks to your prayers and so many 100's of others, we had a nice Thanksgiving present. Remember how we wound up at the local medical oncologist in Ventnor a month ago. I have one in Phila. and one here; also I have one radiation oncologist here and one in Phila. - since this is so rare we need to get many opinions. And until now, the local one hasn't brought any ideas to the table. So happy she is thinking out of the box now.
She mentioned that Gleevec is being tried for cancers, other than the
leukemia it originally was used for . Ryan O'Neal is on Gleevec for his
leukemia. It is an oral drug with less toxic affects than chemo I.V. If you
have a positive C-KIT test, you stand a chance of trying the drug. Pretty
recent marker. I think it has been used for colon cancer, certain ones. Is
this amazing. Non-invasive.
Anyway she called Penn, where my lung surgery was, had them retrieve the histology block, and they did the test on that. I have it. Is this amazing. Non-invasive. C-Kit stands for something particular on the tumor cell. It seems to be on some cancer cells and not others. They also did the EGFR test on my tissue [another substance on some cancer cells]. Alan found a lot about this in relation to what chemo works on what. He is totally the light of my life - what he has found out in the literature is incredible. I was thrilled they took the initiative to do it - I was going to ask them to do it next time I had my follow-up. I love when they read my mind.
My tests came back the other day and were strongly positive. SO Alan wrote
to the pathologist in Ohio, that is an expert in thymic carcinomas [and on the
Foundation board] & he says this is encouraging news. After the scans it
will be decided if and when I should go on it. 2 markers that are positive
opens a new door.
I didn't get on the computer yesterday since I was coughing too hard every time I got near it. We bought an ionizing air cleaner and that helps a lot.
Can't figure what helped with the sleeping. We now hook up a vaporizer, ionic air cleaner, I turn on a heating pad on my chest, suck a life saver, pillow under my knee and take 2 acetaminophen or aspirin. Is this a ritual or what. Oh, and you will loooove this one...and I tape a stone to the bottom of my foot in a reflexology pressure point. What else is left!
The back has a memory. I know what you mean about the drive to Cape May -
the extra 45 minutes can do in a back in no time. This is what happens with
us and coming up to PA. Town is an hour an a half. Anywhere else is at least another half hour and that breaks the back.
It is good to have the spirit of adventure. We did too when we were
younger. There is nothing, at least to us, like one's own bed and closet full
of cloths [not living out of a suitcase] and refrig full of favorite foods [at
least for us], These were some of the things that we sorely missed when we
went away. I'd get homesick for the familiar.
The physical therapy has helped immensely; I am taking less Excedrin and
walking more. During physical therapy today, we discovered something else.
From all the questions and pressure he put on my knee in different places, the
therapist felt that my knee pain wasn't related to my back and the lumbar
disks but a separate problem. He will try to help the pain somewhat with a
separate set of exercises.
That was good - I always look at those people who order coffee with sweet n'cancer and then eat a big piece of chocolate cake. I agree with you - moderation. Who knows if that is right or wrong. My friend swears if I'd eat loads of brocco sprouts, I wouldn't have cancer [ugh - hard to get those little suckers down].
Like you, my neck is always sore. Most of my clothes that I had 3 years ago
are useless because if they have collars, they hurt where the surgery and
radiation was. Sometimes I cut them off [real attractive look]. All my
turtlenecks [and each one had my initials on the collar] are painful so I cut
off the neck. There is a product called Lindiskin that a friend brought to me
from a breast cancer seminar she went to. I put it on my neck one night and a
painful tee shirt was wearable. If you look it up on the internet, maybe there
is something that can help you. It is not permanent of course. Just a reprieve
for a while - it is like a gel. The skin is so tender.
The scans are set for Dec. 28th and then we find out if I go on Gleevec.
One of my drs. [local] wanted to start it right away but the others want to
see the scans first.
Tomorrow evening is that big Manna dinner fundraiser we go to each year. We
got our tickets months ago so I am glad I can walk so we can attend and maybe
even dance a little. It is a very elaborate extravaganza to raise money for
the cupboards so on the days we all make meals, we have enough for 120
patients [3 meals a day for a month] - 30 top local restaurants each make an
entree. And there's a big dessert buffet where a French lady makes crepes with
ice cream and strawberries and hot fudge. This is up my alley.
As for being the caregiver, you understand it all so well. That is one reason Alan took the 3 day motorcycle course the state of N.J. gives and bought a motorcycle. It is a good escape for him that clears his mind for a while. It is always something he wanted but realized it is time to do it. We like to go thru life and have no regrets. Especially since 3 years ago. Not deny ourselves anything within reason.
I am a bit loopy because I had cut back to 5-6 neurotins a day since my face had eased up. Well this past weekend, the trigeminal shocks started up so I am increasing the neurotins again and am a bit out of it. Today I was very light headed and dizzy.
On top of that I have a pain in my left side [near the ribs]. Hopefully it
is from coughing. But luckily I see Dr. Kaiser at PENN on Friday for my
thoracic check up. He is going to do that scoping down my nose to the back of
my throat to see my vocal cords. Not that I want it done but it will save me
going to another dr. [an ENT] and sitting in the office, etc. At least while I
have one dr.'s visit, it can be performed. Little saving graces.
We did get to the Manna dinner last evening and the food was the best I
ever remember. The dessert crepes with ice cream and hot fudge were the coupe.
Alan told me to reserve him a dance and we actually got in a few. It was just
what we needed, after weeks of inactivity. I used a piece of this Lindiskin
'gel skin' for the evening because my outfit was starting to irritate. It
cured the problem 100%.
We will find out all the answers in 2 and a half weeks...the scans are for December 27th [PET and CT] and then it's up to PHila. for the different drs. to READ the films themselves. I sure hope the m.a.b.'s have done something and we can hold the gleevec in reserve for a while.
Yesterday I had the physical therapy and I am not thrilled with the set up there. It is supposed to be an hour and after only a half hour, the therapist said I was done. He charges the insurance for an hour. It is a weird place. When I got there, no one was in there, at the desk, or back in any of the rooms. I strolled around and so did another patient. When the secretary came in she reeked of cigarette smoke and it inhibited my breathing since my airway is so narrow anyway. I told her she doesn't want to wind up like me. She was expressionless. I asked if she smoked in front of her children and she said she tries not to. I said when she does, it is child abuse and she should visit the lung floor where I had that surgery.
I am not thrilled with the set up there. He was treating 3 of us at the
same time and just rotating between us and most of the time 2 of us just sat
or layed there doing nothing. I will continue at another place - probably
where I went after my neck surgery in 2002.
We don't knock ourselves out with this season. We don't need to do much. My
sister and I [and family] don't exchange Hanukah presents now that we are much
older. We always get my nephew a subscription so that is easy.
We get presents for the mailman and for a party we go to at our friend
Patty's on Christmas eve. For her daughter we got a gigantic make up box;
legos for her son; for Patty, 'Type Oh' and an Iomega disc drive. Her mother
wants links to her celebration bracelet. And a pepper mill. They always get us
extravagant presents or give checks to the Foundation. Maybe I'll get a gift
for our trainer at the fitness center.
Knew you'd like the new oncologist. What happens is, it spoils you to get a
dr. like that and then you expect all of them to act that way. ANd
unfortunately they don't so I clash with those. If someone even tells me about
a dr. doing something neat [like giving his patient's his cell phone no.] then
I get it in my head that I want my drs. to do that too.
Worse than s. and Jeff, I found out Phyllis was there [their step- mother; after their father divorced the first wife, he married Phyllis - 25 years it lasted till he died]. Anyway, she did NOT support the Foundation at any time or come to either fundraiser. I have a bad feeling about her - she said she couldn't afford it. Lori, she went to Germany to the passion play, FL. for 4 months every winter, she golfs at least 3 times a week and goes out to lunch or dinner every day. I didn't want to hear about her sob story so I put her in a balloon and floated her away [over to Iraq - ha-ha]. And I don't care to be in her presence.
My voice has been more hoarse lately so I keep phone calls quick - or I
start to cough which I don't want to do more than I have to because my disks
are easing up and I don't want to aggravate them again.
Today we were up to PHila. It took 2 1/2 hours to get there. Everyone in
our path crashed there cars. Inconsiderate louts. A killer day and 2 drs. to
see. One is a radiation oncologist at Penn - a new one [a 3rd one]. We totally
liked him - a lot. Very genuine also. Very real and honest. I still have a
pain in my left side [near the ribs]. They are also hopeful it is from
coughing. They think. Or the physical therapy routine. The drs. get excited
about anything these days so I have to check it all out via my next set of
The radiation oncologist doesn't want to start any radiation now since the
last set burnt me so much he doesn't know if my body could take it. He said it
would have to overlap the area they did last time. The side affects would be
the same. Partly based on listening to me talk in such a hoarse raspy voice
helped him decide. He thinks some of the 'tumors' the A.M.I.radiologists write
about on my scan reports could be interpreted as scar tissue. Only some.but a
He said they could use the same tattoos on my neck - you remember when they
had to do those. It was hard to be there; at one point someone walked by with
a mask for the head and it was much larger than the one I had.
And luckily I also got to see the next physician, Dr. Kaiser at PENN for my
thoracic [lung - or what is left of it] check up. He was going to do that
scoping down my nose to the back of my throat to see my vocal cords, etc. Not
that I wanted it done but it was going to save me going to another dr. [an ENT]
and sitting in the office, etc. But we got started on my problems and he
forgot to do it and I forgot to ask. Until we were in the car. Whew...for
now...but I guess I will have to get it sometime.
He liked the sound of my lungs and he also gave an opinion on my recent
films. He wants to try steroids on me [to reduce my cough hopefully]. If they
don't work [and they aren't so far], then they are thinking maybe it is one of
those M.A.I. infections.
I thank you so much but it is odd...I don't see myself as brave. Just being
me and doing what any one with cancer does. 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.
We cherish your prayers and this is what we need more than anything else.
They may be as or more important than anything the docs can concoct.
For the last 4 years we have been going to Patty's house. She was one of the first people we met down here [in our kickboxing class] and we hit it off and got close. You would like her ---she is so spiritual just like you. She was a help during the operations and radiation, and she did more than my own sister. Anyway, her family too, has been so supportive of the Foundation. She has many sisters [one, a twin, who lives in DE.] and they all came to the fundraiser we first had, an Aerobothon at the fitness center. And in April they all worked so hard with us before and during the event. One nephew, even, helped carry the boxes of auction items into Resorts. We really needed the extra hands and she pulled her daughter and son from their activities to help.
There are some cool traditions they all have on Christmas eve. I'll have to
tell you when we see you. It is like an old fashioned Christmas, I remember my
friends has in the 50's. We start buying their presents earlier and earlier
each year plus they like my home - made bread. Patty's mother makes a huge
dinner and there are about 40 people, many neighbors that we know.
Now here is one of those bizarre coinkydinks you run into in life. Alan
took a call the other day from a woman who lives in Abington who probably has
some type of thymus disease [they are not sure yet if it is thymoma or
carcinoma. We told her about Dr. Kaiser, who she got an appointment to see
Friday also [we never met - our appointments were at different times.
Anyway, she said [when she called yesterday] that her husband is Jerry
Siegel. I vaguely remember him from the synagogue. Do You? Her name is
Bernice. Then today, ALan and I think we met them on the beach once. The ONE
time the bassman's had guests, I think it was these 2. I will find out next
time Bernice calls. There are a few odd twists-we don't know how she got our
That was our reaction when we opened the Harvsters "Merry Christmas" card. Does he get it or what? Did you get one. Do you ever talk to him.
If you ever do, tell him, First we don't want his card and second can't he
acknowledge that he needs to say some comment on hope you are doing o.k. or
along that line. Just totally ignoring what we are going thru, minimizes our
He is so seriously out of our lives.
Packing for that long is difficult. When we went for a month, we took about
2 weeks of clothes and then found a Laundromat which was fun. You get to meet
local people and sometimes they told us of sites to see that aren't in the
books. We'd pack backwards too. We put in the top of the suitcase the clothes
we'll need first [usually a bathing suit]. Then all we have to do is peel off
the next outfit. It saves a lot of rummaging around.
The p.t. did help a lot; I can walk almost a mile now. While in the p.t.,
we discovered something else. From all the questions and pressure he put on my
knee in different places, the therapist felt that my knee pain wasn't related
to my back and the lumbar disks but a separate problem. He will try to help
the pain somewhat with a separate set of exercises. Just what I needed - 2
problems instead of one.
So I am on a dose pack now. I wasn't supposed to take aspirin with it so
for one day I didn't take my Excedrin, which has 250 mg. of aspirin. By last
night I was coughing constantly and had 2 days of the steroids and it didn't
seem as if they were helping.
After I took the Excedrin, the cough got much less. Today when the coughing
got worse I took another Excedrin. And I am doing better. I don't think it is
the steroids now. But we'll see tomorrow. I won't take the Excedrin until I am
desperate...and I do get desperate from the choking non-stop.
I had so many pre-conceived notions of who rode motorcycles but they have
been dispelled. So many people here at the shore ride motorcycles we have
found out [many of our drs., the town commissioner who must be 70, some
lawyers, other business types]. It must be because it is a nice place to ride
- the scenery along the water is mesmerizing. I like to be on the back and be
driven; have no desire to get my license [it is a long tedious process].
We went back to the gym tonight for the class we had like - some weights
and some non-impact aerobics and exercises for 45 minutes. I only did what I
could and used much lighter weights than normal. It felt good though.
Like you I have never made it to the one year mark [and then again, not even the 6 month mark]. I went backwards - most cancer patients go from 3 months to 6 months for their scans. But I was put back to every 2 months. It is like detention room in school [but I wouldn't know about that].
This cough is driving me crazy. I think I am having less episodes of it and
hope the pack is working, then WHAM. I start up again. So it is imperative I
take an Excedrin since that calms it down a bit. Today my upper back is
hurting so I don't know what is blown out now. It is so depressing.
Those little bastards deserve the death penalty for what they have done to us. Your swallowing is like mine; I need liquid around too...if it is a smidge too dry, I can't swallow it. I have pain inside and out. Besides the horrible cough.
We take great pains to avoid germs. I don't go to places with large crowds
[like movies], we keep rubbing alcohol in the car and Lysol for cleaning our
hands after touching public door knobs, etc. A cold would kill me.
The trigeminal neuralgia has also been causing me some grief. I got down to
5 pills and wouldn't you know it, on top of all else the shocks /pain started
coming back. Strong lightening bolts that stopped me in my tracks so now it is
mandatory that I am going up again. I am at 8 pills a day. They put me in a
stupor - neurotin.
Good for her - not taking statins. Our friend's mother is 85 and they tried to push them on her. You can mark my word - just like celebrex and vioox ---soon the news will be talking about the statins being off the market somewhat. What is wrong with eating between meals. That's why God invented snacks. Yum.
If a person has existed 85 years or so with a certain value of cholesterol
---I say why tinker with it now. Leave the person enjoy what is left of their
life with the least medications possible. There are so many bad side affects
but you are right ---drs. are touting it for every group in the
population/that is big bucks for the pharmaceutical companies if EVERYONE
takes their damn statins. And the drs. have stock in those companies.
Yesterday I coughed so hard, I heard and Felt a pop in my rib and then I was in terrible pain all day. ALan wrapped an ace bandage around my ribs, I'd ice it 10 minutes every hour, and take my beloved Excedrin. Today it is still painful but we did manage to go out in the car to get a paper and some movies.
We have to get a pulmonologist and do something about this damn cough. We
emailed the Penn drs. to see if when we come up on Dec. 30, one that they
recommend can fit me in. It is literally killing me little by little. Being on
the computer starts it up. As do so many other things.
A quiet calm weekend is the best. I tend to wish for boring, and love to stay at home. I went thru file boxes [of medical records from year 1 of this ordeal] and threw away hundreds of pages of items we shouldn't need. Kept copies of reports and letters but no duplicates. I filled trash bags and am not done yet. Did not enjoy glimpsing at what I went thru though.
We run and run until we drop. That is why people look at us and can't tell
we're sick. We do more than healthy people. At least all this correspondence
pays off in developing a profile of thymic patients.
Last night we went out for dinner with friends and they brought another
couple we had never met. The woman kept going on about my skin and how I
didn't look sick. I get that ALL the time. I just have to remind them what is
happening on the cellular level.
It is just like the woman you described complaining about her daughter.
Yes, what would normal be like. I don't think we ever took it for granted
when we had health. I worry about you too. We treasure your concern for me. I
am worried too - this horrible cough is all day and all night. I need to make
it a priority to find out what is wrong and try to alleviate it. Now my left
I'll talk to you this evening - last night was horrible. I had a check up with J. Check and it ended up with him doing an endometrial biopsy. It took him an hour. It was so painful and nasty. Now we have to worry about the results.
You just wouldn't have believed it. What would you have done? [not a
rhetorical question] I had an 8:00 P.M. appointment for my general routine gyn
check up [I need them 2 times a year but I stretched this to 9 months ...how
Before my appointment started, since the dr. was still in with the person
before me, the ultrasound girl took me back for the scan. It showed a lot. We
aren't sure if it is from the mifepristone or what. Mainly, the problem is my
ultrasound of my endometrium showed it has gotten thicker - from 5 mm to 11!
I had no idea how complicated AND PAINFUL the visit would be until we were
taken back to his office to talk to him. It ended up with him doing an
endometrial biopsy. It took him an hour since I have a twisted cervix [that
could be the name of a rock band] the capillary wouldn't go in and up at
first. He had just about given up finding the tissue and then asked for a
forceps. One of the catheters must have loosened some and it didn't come out
with the catheter so he saw it between the cervix and pulled it out. I hope it
wasn't my bladder or intestine or tonsils.
I told him when he was all done [to be sure he didn't ram anything else up
me - like 8 things wasn't enough already] that a Nazi invented this torture.
Once he left the room to get another kit and the nurse said he gets upset when
women are in pain. Maybe that's why he doesn't deliver babies anymore.
I am glad he is thorough and equipped with all the instrumentation right
there. He also made a slide of the cells and put it under a special microscope
to show if there is any yeast [there wasn't thank God], infection [there
wasn't], and the estrogen to progesterone ratio. From that he can tell if you
need any RX's. It is amazing to look at - he took Alan and I back to look at
the slide which he projects onto a computer screen for us to see.
Also was invaded for a PAP smear and occult blood. He didn't miss one
orifice. After I left, he starts returning phone calls till one or two in the
morning. There have been times he has called me that late. I try to stay awake
when I ask for a call back.
A thicker endometrium is BAD. Unfortunately. We are hoping it is the
chemicals and can be undone. Someone just told me a story of her friend
needing a hysterectomy become of her thick endometrium [I could shoot her for
divulging this now]. Anyway, I hope you are right and it is nothing.
"I don't know if you got the other letter, but I just wanted to point out again that when you said you didn't like glancing what you went through remember it proves you are a survivor."
Your immune system must be suppressed too, like mine. I go nuts trying to
keep germs off me; we don't go to crowded places like movies or stadiums. I
carry alcohol wipes for after I touch doors or money. ALan is careful too
because he could pass the germs onto me.
I refuse to let them treat me any way other than professional. And with a
My Penn drs. were instrumental in getting me a very needed consultation. I have been coughing for a year and a half and since November with the herniated lumbar disks and last week I may have cracked a rib, seeing a pulmonologist is a high priority right now before I do any more damage. We have to get a pulmonologist and do something about this damn cough. We emailed the Penn drs. to see if when we come up, one that they recommend can fit me in. It is literally killing me little by little.
You remember about the fiasco with the one we saw here. He had a short fuse
in the office and outside was arrested for assault. It was in the police
blotter. Peter Constantini - he was horrible to some of our neighbors also.
If I could stop coughing, I'd feel pretty acceptable. I will see an expert
at Penn in 2 weeks. Other than that, we are nervous since my scans are Monday.
What can we say...that is your father. Eternally. Just ignore them. The
only thing you could have done is say it is a shame it is so last minute. You
already have plans. That is the only save you can have. Be busy. It really is
rude to expect you to be free, just sitting around holding your breath in case
he ever calls. ANd then to be mad when you are busy is just asinine. Forget
it.It will never change - you have to learn how to escape it all without them
making you the bad guy.
The man in Canada called this afternoon. His spread to his spine and they
had to do a 10 hour surgery to remove it so it didn't press on the spinal
nerve. They found a mass in his chest too but will deal with that next. He is
in his 60's, his brother has cancer and has given up, and he was a former
We learned to make new rules to keep stress out as much as we can. Sometimes I worry that our frantic lifestyle back when we worked or some of those lawsuits, may have set the stage for this awful disease - I have read how stress breaks down our immune systems and that is when these dread diseases creep in and take over. I'd hate to see even my by worst enemy go thru this.
If you can take away anything from my ordeal, then may it be to ONLY do in
life exactly what you want to do and enjoy. Just turn off those 3. Before you
get too old to ever find Mr. Right again. You don't want to lose him for a
lifetime so your kids and ex can have a few hours of '' Nya Nya - we won this
Xmas eve there must have been 15 kids there but it was quiet as a church -
guess they were on their best behavior. I couldn't believe how good they are.
ANd here is almost a classroom of kids all polite and sweet and dressed in
velvet and lace with little dress up shoes. Santa came [a friend of theirs
dresses up ] and Patty's mother gives him the gifts ahead of time [he carries
them in a trash bag].
Very good dinner her mother makes - pasta, roast beef, ham, chicken with
pepper hoagies, etc. Lots o' desserts and candy. We got presents, too! AN
autographed copy of the new James Patterson novel and a beautiful garden
thermometer [with wood nymphs, etc.].
We are about to go out and meet Nancy and Steve AND ADAM and his girlfriend at a restaurant on the bay in Somers Point that is trendy. Adam's girlfriend was so so sweet. She is a few years older than he is, not working since it seems like she has some health problems, and a pleasure to talk to. She gave me quite a lot of compliments. Her hair and dress were lovely. She had 2 braids down her back and the rest was done up in like a scrunchy. And she had a tiny diamond nose pierce. She was wearing a necklace Adam got her [a Lord of the Rings piece].
Stacey is terrific; we like so much about her. I was very impressed with
her compassion over me [she has such a nice manner about her ---more so than
many adults]. And she pleasantly surprised me by knowing about Biafine, a
cream for radiation burns [her mother had breast cancer] - not one other
person, even other cancer patients, knew about this. I feel bad her mother is
going thru so much.
Did I tell you my cholesterol dropped to 390 -gee it is almost normal, for
moi. Remember that since 1966 it has been 375! BUT, the triglycerides were
400! I think I had a large cookie before the blood was taken. HAHAHAAA. There
were a few other abnormal values that the drs. will have to look into - on my
blood smear, there were not enough lymphocytes and too many basophils. My
alkaline phosphatase test was a bit high also.
Right now I am sitting here stewing; you would understand - I prepped for the PET and CT scan today & yesterday and as we were leaving the house, the imaging bitch called and said the machine isn't working. Besides the emotional stress behind further delay, we had all the oncology appointments set up based on getting this report tomorrow. Plus all the water I had to drink yesterday, no caffeine, no exercise, AND LOTS OF COUGH SYRUP, etc. And to make it worse, they still haven't fixed the instrument and are closed now. ANd I can't open my eyes I am so tired from all I took so I'd relax during the test.
My friend reminds me of this all the time. non illegitimi carborundum. It
means don't let the bastards grind you down ---Latin.
This whole thing is a fine 'holiday' present and a pain in the ass. My
voice was totally out [too much codeine today].
It is scheduled now for tomorrow. Meanwhile I am finding out the place
forgot to pre certify it and one nuclear tech was absent and they may have
lied about the machine. I am going elsewhere, needless to say. It never goes
What used to seem important is so meaningless now - life takes on a new perspective. Compared to health, there are no problems. For ex., the weather. What weather? It wouldn't matter ...rain, snow, if it were a beach day or not. We spend most of the day inside on the phone and the computer dealing with insurance, appointments, research and answering other thymic patients and their families. If it is inclement we enjoy sitting by the fire, making soup or a pie or a stew. If it is nice, Alan enjoys taking his m otorcycle out a while. But either way, we are happy just to do anything normal.
They never got the PET scanner up and running - they kept lying to us with
each call. Meanwhile I am finding out from our insurance company that they
probably lied and forgot to pre certify this test. Then they are saying that
one nuclear tech was absent and that may be why they may have lied about the
machine. Shore radiology - skip this one. Terrible.
It was re-scheduled today at A.M.I., my original facility. I had a decent
nuclear tech [not the nasty one]. I called the owner of the imaging center
yesterday afternoon. He actually told me to do that when I met him at a party
last summer. I guess he called the PET scan department and put in a few words.
Alan was allowed to sit with me [absolutely no problem], they took me straight
back for the CT scan afterwards [originally they told me I'd have to return 3
hours later which I;d refuse to do since I didn't want to be stuck with a
needle a second time when I already was there]. I even left with my films so I
have them to take to Penn tomorrow. Now...we wait. Hopefully when we are at
Penn tomorrow Dr. Stevenson can call for a preliminary report.
We were at Penn yesterday to get the results. The imaging center told me that they sent the oncologist the report and I could get it from him. He hadn't received the fax when we got there. He read the films, which I like better than the prejudiced view of the reading radiologist at A.M.I. They always add words that are too editorializing which I think creates more business for the radiologists by the drs. ordering more scans.
Anyway, mine were not good - one tumor in my lung is bigger, several in my chest are bigger [one grew 25% ] and show more cancer activity on the PET scan [higher SUV's = higher brightness = more cancer activity] and some other new suspicious growths showed up. He started me on Gleevec, which is the drug for which I tested positive for the marker [CD- 117]. It is one pill per day. We pray this is the answer and 2005 will be better. ANd the scans did show the rib I cracked coughing but that is the least of my worries, obviously.
I just picked up a 3 day supply of Gleevec since the pharmacy was out of it
and has to order it. Now we are going to read the literature and instructions
they packed with it.
I started the Gleevec this morning. A bit nauseous, some diarrhea, and my
trigeminal neuralgia is worse. I don't know if the last is a coincidence or
what but I upped the neurontin and am in zombie-ville.
We did not donate any money to the flood; our [yours and mine] very high
taxes take care of that. That is how the government came up with 500 million
to send over there. I could not believe it. It is very sad but there are too
many things in this country that need help ---people with no health insurance
mainly and kids with no books. If we give so much, other countries tend not to
give their share and that is what is happening. It all falls on the U.S.
because we always do too much. Some countries are giving nothing. I wish them
well and recovery and feel bad for them.
Anyway the Foundation needs every spare cent we can muster. It is not like
the huge government so we have to put in as much as we can. It has become our
only charity by necessity.
What did you do New Year's Eve. We stayed home. We were happy to stay at home and catch up on old Seinfeld reruns we never saw. At midnight we heard fireworks and looked out of our top floor window and could see them over in Ocean City.
We were supposed to go to Sherry and Neal's for desserts but they were on a
progressive dinner [last stop at their house] and they did not get home until
11:00 which was way to late for me to start traipsing out in the cold.
But yesterday was so warm out, that we took a little bicycle ride. People
are wearing shorts here. No jackets but tee shirts. Caaaa-razy
The last week I have not been able to talk much [since taking the cough
syrup]. So sorry not to be able to talk. My vocal cords go in and out since
the radiation and neck surgery. This week it has been particularly bad. I had
no voice 3 days - it coincided with me taking a massive dose of cough syrup so
I wouldn't cough on my back in the PET scanner. Then as the cough returned so
did my voice. By last night the cough was so bad I needed the syrup again [Tussionex].
So today I was hoarse. If I forced my voice, I'd cough. If I cough too hard, I
hurt my back and ribs. It is a vicious cycle. This morning I was very
depressed over it all. I would have liked to talk to you.
On top of it all, the trigeminal neuralgia has also been causing me some
grief. I am at 8 pills a day. They put me in a stupor - neurotin. I am in my