at the radiation oncologist this week and we left confused. He
looked at both PET scans [March and last month] and he DID SEE the spot so
it is not new. It has been there all along. Now the question is what
is it? So after we see the Hahneman radiation oncologist in 2 weeks, we
will Fed Ex the films to my surgeon down in Maryland, now, and get a 3rd
opinion. Since he was in my neck and knows it so well, maybe something
will occur to him. So the wait begins.
I am emailing a few drs. from Harvard's Hospital [Beth Israel] and
another few drs. from Columbia-Presbyterian in N.Y. who have some
experimental treatments......just in case ......
hope the spot is nothing, rien, nil, nyet! I thought today that if
it were there in March, and it were cancer, since then it has been
radiated and got the death sentence. That area did get hit for half the
doses. So anything that was there should be gone. Right? Who
knows. It is beyond us for now. We keep looking
outward, and plan to keep using our talents. There is a reason for
all of this and may we learn it soon.
These days, you HAVE to be your own doctor and have an advocate with you. It works out much better if you take your health care into your own hands. It is very bad when you are too sick, though, to be vocal or participate so you MUST have a trustworthy person to help.
I had written to a few drs. at Yale, regarding some research I read about in my journals that they did on finding a protein that causes cancer [hence there would be a cure to remove it from the body]. But the answers were not good. They identified a gene in breast cancer but the study was limited and very preliminary. They said there are so many various cancers and nicely wrote that mine is not considered with breast cancer since it is so different from it and very rare, therefore it gets no attention at all. They told me they are scientists and not clinicians and even though their goal is future therapeutic advances, they are restricted and in a very early stage of the research and many years away from determining whether this gene they discovered, holds any promise for novel therapies.
It came as a disappointment because Alan and I are looking for something NOW in case this 'spot' is a problem. It seems as if they are right on the cusp of providing therapies for cancer treatment and I am certain, yours will be among the first because so many people have leukemia. Mine, on the other hand, will have to be beaten, as a side trip from one of the more common ones.
we know wonderful people here; the Freiberg's took us away for the
day. We really needed it. We took a drive up to the Northern beach
this rain and drizzle we went over to the
We are going for breakfast on Friday morning to the Trump Marina breakfast
buffet. We go once a year and wanted to know if you and your hubby want to
meet us there. We plan to get there at - there is a coupon in the
entertainment book for 'buy one, get one.' SO it is ridiculously cheap - the
breakfast is $7.50 per person, and one is free so you each eat for $3.75.
The book expires in a few weeks and we still haven't used it.
I will not give up hope. One never knows what accident might lead to
the discovery of a cure or better more civilized treatment. And we
already started our own foundation, I thought I told you. It is
called the Foundation for Thymic Cancer Research. We have filed the
papers with the government and Alan reserved a website for it. There
is lots to do but it will take time. We have to have a fundraiser to
raise money to get a toll-free number, literature, etc.
We just don't know why I keep getting hoarser and hoarser. The morning is the worst. It takes hours for me to get some voice. We hope it isn't scar tissue growing and pressing on the vocal cords.
we did something that I wasn't sure I'd live to see. They have been
building a k-mart near us and it was finished and opened today. Not that it
is any great shakes, but when I learned about it last year at this time, it
was something we looked forward to since there is no other one near us and
Wal-Mart is 30 minutes away. This is 10 minutes. But when I learned I'd
need surgery, I thought that it was possible that it would not be completed
in my lifetime [given the k-mart financial troubles].
That is just so sweet of you to offer help with the Foundation. I will let you know when we get to that point. We are feeling our way through this. Right now we have just finished selecting the board members and are writing up their backgrounds so we can put it on a website. We picked several drs. that have been instrumental in getting me the proper care the last months - my surgeon from
are so right - it is an understatement to say it is no fun. When
people would start with their cheery words and trying to be positive for me,
it would get me angry because they were not living in 'my' moment and
enduring the suffering. They still do it.They are not in ''my neck" and
can't fathom what it feels like. They just keep saying I look great. But
they have no idea what I am feeling inside.
Last weekend we went to Brigantine for breakfast at a place called the pirate's den - across the street from the beach there. We met people there. He started up again what a strange summer it was and how he hardly fished. SO since this is the 2nd time he did this, I couldn't sit quietly. How dare he bitch and moan because he chooses to work a lot I said, "Yes, it was an awful summer having to sit in radiation therapy every day burnt to an ash." So he shut up finally. I decided to go wild and got a waffles and ice cream sundae for breakfast. Damn the cholesterol - full fat ahead.
cross contamination issue is one of my biggest pet peeves. The dr.
on the gloves, puts his hand on the lever under the seat to adjust it, and
then puts the glove in your mouth or other bodily site. VOILA - you have the
germs from under the seat from the last patient. I see germs, like the 6th
sense kid saw dead people. I can think of scenario after scenario. Like
they put on the gloves and then pick up a pen or pencil. Like the blood
pressure cuff - how many arms with germs has it been on and never cleaned.
And the tourniquet for taking blood. Lest we forget the stethoscope. How
many chests has it been on transferring germ after germ. Ewwww.
just got back from Alan's BirFday dinner at Careme's [the ACCC restaurant
school]. I can not rave enough about the meal. The students do a fantastic
job ---they try to please so hard since they are being graded. I told the
teacher in charge that the meal, etc. was better than Le Bec Fin [and we
meant it]. Maybe it was just gratitude that I am starting to eat normally
again ... but I have to be careful with some foods, still. But, it was nice
being out and about for a while.
far, I have no results for today other than the technician telling me how
hard it was to image my neck because it is so full of scar tissue that she
can't really see anything. Now we wait for the results.
Tomorrow I will start calling the doctors. I left FOUR drs.' names
and phone numbers so I hope one will call fast and put me out of my
misery. Each time I up the list by one more name [like it will do
energy is improving but I have not gotten to the winter clothes yet.
It has been on my list for weeks and I look at it and then do
nothing. Oh, well, I still see people wearing shorts.
Brrr. Swallowing has slowly been improving, thank goodness, but I am back
to limited talking since suddenly 2 weeks ago I started getting hoarse,
losing hair and nails and now they are wondering if my thyroid was burnt
so badly it has stopped working. Just got back from more tests at
Atlantic Medical Imaging. It never ends. They suspected the
thyroid but the blood tests came back with normal values. But then
it could also be lingering affects of the radiation, too, maybe.
Or it could be any number of things that we haven't even thought of yet.
That is one reason I appreciate the email so much these days while I am
trying to conserve my voice.
Now I am dealing with a lot of people that are 'self proclaimed doctors.' They minimize my illness by telling me I am losing my hair due to stress.
course we were out today when the radiation oncologist called but he left
a message that the dexascan was negative [which I expected; I always had a
good bone density]. And the thyroid ultrasound message was a bit unclear.
We aren't sure if they saw nothing because of all the scar tissue or it is
good news and nothing showed up. He did say that I should talk to my ENT
[the one who moved to
next week, injected with radioactive dye, before the next PET scan. I
called the office but it was too late and what they faxed to me for the
report was only the preliminary reading. And after last time, with the PET,
I don't put too much stock in preliminary readings. So by Monday, we will
get some better answers but it was nice of him to call and leave the message. Most drs. are reluctant these days to do that.
We had gone over to do my physical therapy and have breakfast with Phyllis.
The Port O'Call is a great place for breakfast. The view can't be a matched
and the menu was varied.
Maybe I am just starting to learn all these new signs, but the aches today
were more so than other days [people say it could be the impending weather].
Where the surgeon cut, I still don't have a lot of feeling since he cut
nerves and they haven't come back yet. It is a very strange feeling and I
don't like it. I can't touch that area so Alan has to apply creams, etc.
But inside, it is painful. And a very tight feeling, like it is swollen and
the skin just can't stretch out any more and as if something is in there
pressing out. Yesterday it was even more uncomfortable than usual.
Barometric pressure could be a good indicator. Is your area where the
surgery was the same way.
Alan has been promoted to Vice Chairman of the Planning Board here in Longport. He came home from the meeting last night with this new tidbit. This is hysterical.
We used the internet this weekend to do some shopping for hard to find items. Here's why I love it. I saw this top in a soap opera magazine on one of the stars in my show and couldn't find it in any local stores. We wrote to the magazine, got a name for the top, Alan contacted the company, they told us what store it is in CA., we called, and the owner shipped us out the top. Then in a different magazine one of the stars had on these sandals that I loved. So there we go again. Same routine. Except we found the sandals but they are pretty expensive. I am making a decision.
Insurance is a mess these days; a few months ago I put in a claim on our dental insurance for the fluoride trays we had to have made for mouth during the radiation. Well they kept refusing to pay saying it wasn't an allowable expense. I wore them down.HAHAHAHAAA. I wrote that I saved them lots of money by using them [or else I would have had trouble with my teeth and then I'd need major dental care at their expense]. I also said I was taking it to consumer and medical groups and that they had no compassion for a cancer patient.
found that having a trainer helps us because she gives us a form with
grids to fill out each time and it keeps us motivated. We put the
date and check off what we could do and at how many pounds.
And how many repetitions. We don't overdo it; no more than 3 times a
week. Or we'd get burnt out. As for sleep, most nights we are so
exhausted, we do sleep ok. Alan has always needed more sleep than me
anyway and gets tired sooner and could sleep later so thank goodness, this
has not changed. The radiation affects are not totally worn off yet
and at an instant, sometimes, I can doze off.
and I remembered something about the dog he had when he was in high
school. Is actually what he remembers NOT doing. The dog was never outside
the house on the property unless it was being walked. On a leash.
sending good wishes your way and keep taking those good aura pills to give
the not - very - bright criminals a chemical onslaught. Remember,
they deserve the death penalty for what they are doing to you and your
family and friends. [a la notre amie, Miriam]. Kill,
kill, kill. This is war - you will prevail.
friend Miriam from Merion kept telling me all through the nightmarish
months. She would say "You're lucky that at least they have
those tests to do to you." "You're lucky to be able to get
under the linear accelerator and get burnt up and your insurance pays for
them. Some people don't have insurance and can't be made an ASH of
by the linear accelerator." I would try to take it in the
spirit she meant it and I knew she was right. So whenever I get
under the 'gun' and they are torturing me, I keep thinking how lucky I am.
decided not to get the flu shot this year. I never had one until
last year - my sister always reminded me not to get one because our
grandmother Rae [Sliding Billy Watson's daughter] had one [in 1978] and
she died in her sleep afterwards. Right before Adam was born. So
what do I do - I change my routine a smidge and get the flu shot 24
years later and get cancer. Thank goodness
Well, today we had breakfast out with our neighbors in the back.
think that sometimes my neck, in places, at times, feels more numb than
usual [amazing how we can even verbalize this]. Then I panic and
think that it must be more scar tissue forming and pressing on nerves,
etc. I just want to be wrong and uninformed.
am trying to think POSITIVE; it is hard at times. Today we SAW the
actual ultrasound report and now understand the dr's. phone message .
The radiologist who read the
I am reaching the end of my rope. The noose is tightening.
But, thanks for the continued support; I could never explain how much it
means to me all thru this. I was supposed to be dealing with my neck
and PET scans yesterday when we went to Philadelphia's Hahneman University
Medical Center and then there is a new curse.
there's was much medical probing yesterday up at Jefferson and
Hahneman for old and new problems instead of the needed rest I am seeking
from all this. Everything is taken as major until proven otherwise
because of the rareness of this malignancy.
I hadn't mentioned this before because I wanted it to disappear and not bother people with more whining. Saturday I noticed a painful red 'welt' on my right breast with 2 long parallel lines running up from it [red lines are not a good sign]. By Sunday, it was bigger, hurt, and there was a nice sized lump in my breast. I kept thinking I was bitten and this is an allergy. I've explained at other times how I get. So all day Monday I tried to get my mammography at
SO that was it. Alan did what he does best and found an email address for the dr. in charge there of mammography at
We had to get up at and got there by even thought the traffic was bad as we approached PHila. [rush hour]. They took me in and told me it would be awhile because my prior films had to be brought over from the file vault for comparison but by [this is RECORD TIME] the dr. came to tell me that the mammyo was normal! Surprise surprise. They must have gotten our emails. And the chief dr. of the department who Alan emailed, we found out today, laid out the red carpet. SO I asked her what about my lump - she knew nothing about it; the technicianS did not tell her. I was livid.
Now this is funny. I'm thinking if I were the country's first lady, this all wouldn't be so difficult. Somehow I said something about teaching and that was it ...magic words - better than being the first lady. This dr. adores teachers, thinks education is numero uno, etc. Everything changed - the whole atmosphere. She examined my lump, she called another dr. in to examine the lump [cheap thrills all around], and then they decided to have an ultrasound on me. It was only . Then the 2 drs. came in and did more ultrasounds themselves. I told them how allergic I am and how it looks like bites I have had except it pains me and doesn't itch. They say it is a large cyst, filled with fluid and it is inflamed and needs to be watched. It would be superb if it dissolved on its own. Then they said because of my debilitated condition that could be the cause of it becoming so huge and inflamed so fast. My counts are still down [except my cholesterol of course].
said it should be biopsied in 4-6 weeks. When they heard where my
next appointment was they were bowled over. Dr. Brady's name brings
'wows.' It happened yesterday when I told my primary about this -
all he could say is that I should do whatever he says [Dr. Brady's
reputation is gold]. I knew he was good, but people in the medical
field kiss his ring.
are hoping the lump disappears; the theory is they'd rather not
aspirate and disturb any tissue if they don't have to, after this year.
All the meds make me very tired [more than usual]. But
at least there is much less pain now, thank goodness. But now
one developed on the other side. The first lump is still there but maybe a
smidge smaller [do you know, someone wrote me and tried to minimize
my agony by calling it a BUMP - real Einsteins; I.Q. of a cucumber
perchance]. Guess I won't be answering that person for some time to
come. People are amazing - some amazing in a good way and some amazing in
a negative way.
SO we did not want to keep him waiting and went over and he was more upset by the lump in the breast than my neck. He put me on antibiotics for 10 days and said he wants me back in 2 weeks if it isn't gone and he will have a surgeon do a scan-guided needle-guided biopsy. He DOES NOT want to wait 4-6- weeks given my history.
What a day. There is more about my neck and he suspects thyroid problems that I need to go to the primary and then an endocrinologist, to put me on meds for, but I am too beat too continue to even write this merde. He compared the PET scans also and wants a thin-slice CAT scan with injection next. That's to determine what the new lit-up spot was about.
Thanks for calling. It helps a lot to talk to someone who has traveled the same road. We seem to be running parallel lately . We HAVE to find something else to do soon. I mean if we are both doing radiation and others we know are following suit, then it should be passť and old and tired by now and we need to move on to something different AND BETTER, right?
primary called bright and early and prescribed a low dose of synthroid
for me and wants me to see an endocrinologist to follow up. He was thrilled
that Dr. Brady left the prescribing to him. I guess I forgot to tell you - Dr. Brady thought the
lit up area may even be a salivary gland or parathyroid gland. It is all so
interesting but at the expense of my mental health. I'd rather this all be
happening to someone else [and I can think of a lot of 'someone' else's].
My luck better change. Reaching the end of my rope. The noose is
tightening. You're correct about my access to these drs. We push and push
and don't stop. A while ago we wrote to Dr. James Watson because he had an
article in one of my lab medicine journals. Watson as in Watson and Crick
that discovered DNA [and not Sliding Billy Watson]. SO today I actually got
an answer. More of the same - none of the tests and treatments he
described exist yet - theory only. But it was a nice letter where he
extended his best to me.
Then we have been corresponding with a dr. at Cornell and he showed all my
reports around to their pathology group there who indicated that the dr. we
used to give a 2nd opinion on my biopsies is considered the best expert in
the country so we had an ''authoritative'' reading. It always makes one
feel better to know the right path has been selected.
Dr. Anastasi prescribed a low dose to start and it is now flowing in my veins along with amoxicillin, atenolol, neurotin, etc., etc., etc. We sure hope there are no interactions. We ordered from Penn Herb Co. several 'natural potions' to rub on the scalp and a shampoo that are supposed to help...probably it's the old west equivalent of snake oil but I fell for the ad.
said I DON'T feel like Job [that was last spring]. Now I feel like
Moses. With the Pharaoh getting harder and harder in his stance and
not letting him leave
There is much less pain now, thank goodness. The lump is still there though.
The synthroid will take some adjusting. The whole pill is way too much to start with. My mitral valve prolapse went giddy up. The insurance systems are so complicated that between the insurance forms and the medical aspects, you have to look after yourself and have someone to help. And you can't take 'no' for an answer. We are hoping the lump disappears. All the meds make me very tired [more than usual]. But at least there is much less pain now, thank goodness.