started the last year at Atlantic Medical Imaging and I ended it
there. And it didn't end much better than it began. The PET scan
that we waited 3 months for - though not definitive yet in all areas -
showed some disturbing results. Monday was a disaster - I did
the 24 hour prep for the test and had to be medicated to withstand the
test [last weekend I developed shingles, pain and all, due to
being immunosuppressed STILL, from the radiation therapy].
There was a snafu Monday - the PET scanner didn't work. So as a
gesture of apology, they re-certified it for Tues, and for the
broken instrument on Monday, the radiologist that reads the test ,
read it immediately and called Alan and I in to see the pictures
and explain that they meant.
The test was painful to take because of my new shingles infection - on my back - where I had to lay for an hour still. I can only guess what elderly people with bed sores must feel. I was pretty drugged up though, and the tech was wonderful with many cushions and always re-appearing with the count down.
First, there is an area in a lymph gland under my left arm that lit up. He said it is possible that at the number it lit up, a low number, that it could either be an inflammation or malignancy. When it is a high number, it is only a malignancy. We are, naturally, hoping it is an inflammation. But we are not deluding ourselves . It will be up to my drs. to decide how to tell one from the other. . . so...... who would think that the test is not sensitive enough.
Then he showed us 2 lit up spots on the lung. Also low numbers. Who knows what that is about [I don't even want to breathe a guess]. He is suggesting to my drs. that I get a Cat scan of the lungs next. Lucille, my friend who is the lab manager at
And finally there is yet another lit up spot on the aorta near the esophagus [or the other way around - I stopped listening at that point since I was totally freaked out and neither of us remember now]. If it is inside the aorta maybe it is arteriosclerosis, seen as inflammation. But it is too many hot spots now. We wanted it to be totally clean.
The only good news was the spot that showed in Sept. was NOT there! Gone! And the questionable tissue from last month's CT scan [thin slice] that they said was soft tissue and maybe reoccurrence of the malignancy DID NOT light up. So then the radiation oncologist was right and it was scar tissue????? SO my neck is possibly dandy. Nothing is fixed in concrete with this - EVER! SO are these new signs inflammations or the start of something else. We have no idea if any cells left the main mass - for example - months before I was diagnosed and then they planted themselves in these sites. It is not clear and concise.
We came home and have been hibernating. We did not want to go anywhere we were invited and put a damper on people trying to have a good time. We just can't comprehend it all in such a short time and are trying to mull thru it.
know that helps immeasurably. You have become such a good friend
seems like when we were younger, we'd go to the dr. and get checked
out and leave...no worries. Now - even if someone hasn't had my
experience - my friends tell us that they go to get their exam
and worry that EVEN if it comes out good in that particular instance,
then sometime eventually, it won't come out fine. It is only a
matter of time. Borrowed time that we are on.
waited ALL day for the dr. to call and he didn't so I called his
office. They said there'd be no results till Monday so we
went to get milk. Wouldn't you know that he called while we were
out, 5 minutes before we returned. I called and he was
gone......till Monday. We can not understand his answering
machine message - he has a bit of an accent plus the message seemed
garbled. What else is new.
think, on one hand, it would be wonderful if it is the shingles
shoving their face in the pictures. My numerous
sensitivities did not seem to interfere with the other 2 PET scans,
though. But on the other hand, the drs. don't want to minimize
anything and have to investigate it thoroughly.
saw a neurologist today and he said it all depends on what vertebral
line the soars from the shingles are on - my shingles are at T-6, I
think he said. So if the PET scan spots match up with those at
T-6, then just maybe, they are the inflammation. It's just that
I waver back and forth - some of the 'stupids' we know that call
to try to cheer me up are minimizing my situation. You would not
believe. One person called to relay every detail about his cold
---another said I should go out and watch the squirrels [like maybe
I'll shove one up their ass]. Another real idiot, said
"..sorry to hear about your quirky problem." Most
people are not like that though.
Today we tried to take a ride to catch up on a bit of shopping I have lapsed out of - it hurts my back when the car jostles. The shingle pain feels like a backache everywhere along the line of inflammation - so my ribs ache like a backache and it keeps waking me up at night. There are actually MORE sores that started. And my rx is done now. Anyway, we managed to pick up a vacuum part, go to the paper goods store, pick up a steak sandwich and a video to watch for tonight [I am bored of it already ---Tom Cruise in Minority Report].
And last but so not least, you two are amazing wonderful beautiful people. That is just overwhelming about your villa offer as an auction item. There are - as usual - no words in any language to describe you. This is going to be some affair. WOW! It is just terrific and a million thanks.
I took lysine and zinc to help ease the shingles; we read about it on
some sites. We put aloe on them [I have a bottle meant for
internal consumption I used for my burnt esophagus] and a GALLON of
We are doing our best and trying to stay in the moment - the here and now and stop "what iffing." Easier said than done... we try to shut down the fear for the moment. Slam the door in our mind and stand back and see all I have done in the past year. I am alive. Scared ...but alive.
Today finally, I spoke to the radiation oncologist - he called and is such a soothing guy. We hope he can figure this all out. He said to see him in a week - he is having the PET scan mailed to him to look at himself. He said since I have a severe inflammation, the PET scan could possibly interpret the site of shingles by picking up the glucose and radioactive tracer and light up. He said that any inflammation will have a higher metabolic rate than the uninfected skin around it. SO if it is highly metabolic it will uptake the radioactive glucose and it will glow. Cancer cells uptake the glucose since they grow at a faster rate than normal cells. But the test can not distinguish the inflamed cells from cancer cells. $6000.00 and the test is not perfect. Keep everything crossed.
crying or screaming - yet. No energy for that. Just numb.
The Rabbi called and said the same thing. Feel free to scream
and curse. I don't have it in me now. I bet I was
angrier at the college and city. This is just overwhelming.I
know it is all for some bigger purpose [ it was meant to be - each
aggravation we had in life led to something else where we used it as
an education]. This could be the foundation or something I don't
even know about yet. God has plans for me. I just have to take
Thanks for the reiki site ---guess this thinking falls under that.
there’s no stopping, --2 people determined to win a war. That's us.
ups and down days…this was an up day. The other day Alan had to go
to Phila. for a chamber of commerce business meeting. Neil
Stein, the restaurateur, was there. He owns some major
restaurants. It was at the
We spoke to Neil Stein afterwards [he is a sincerely nice guy - who never
forgot his roots, his father was a huckster - I didn't expect it but thought
he'd be another G. Perrier.] We told him briefly about my year and our
foundation. He gave us his email address and then offered us a gift
certificate to each of his FOUR restaurants, to auction off when we have the
big fundraising luncheon. We were incredibly touched - he never met us
before. So it is shaping up; soon we need to lock in a date and where.
I was at the gynecologist the other day, he said he wants to gift us a
gift certificate for our luncheon - auction for one in vitro
fertilization procedure [we were told the value is between $7000.00
and 12000.00 ]. We are in shock at this point. We will put it in
a basket with baby stuffed animals. If someone bid the max on it
can you imagine how our Foundation would be well funded for a while
just from that item. We aren't even soliciting yet and people
have been so incredible.
for the compliment about being a fighter. It is ironic you wrote
that but I always said I would not go thru what I went thru this past
year after seeing my mother suffer thru the radiation treatments in
1972. And she died anyway. But when you look into the eyes of the
people that love you, you develop a resiliency that you never knew
you had. Many times I likened the experience to being on one of
those moving sidewalks ---the drs., for example, say "hold out
your arm for blood to be taken" so you do it...you keep on moving
along; the next medical type says "lay down on this
table:" so you mindlessly comply. And on it goes - like a
puppet. It is a mental lifesaver to divorce oneself from what is
happening like that. It is surreal in a sense. And then you hope
to return to some sense of normalcy.
Well, people said to keep busy and distract ourselves. Today we sure did.
are busy this week with our Foundation work, planning the first fund
raiser for July 12th. It will be at the Somers Point Fitness center, and
the owner is donating the gym to us. The support at this early stage is
unbelievable. Four personal trainers volunteered their time to teach the
sessions. The owner of the gym is donating the room. And we are trying to write letters to get water or power bars
the radiation oncologist the other day and he doesn't want me to have
any more scans for 3 months. The imaging place will
be getting a new PET and CAT scanner in ONE machine, even
more state of the art. Only Fox Chase and Hopkins has one. That
should be more precise. He examined me well [as did a
host of drs. in the last 2 weeks] and feels we have to give the
shingles time to subside. They are painful and burn at times but
he doesn't want anything put on them. It is a tricky
sore. He said the shingles DO NOT line up with the spots on the
scan ---those are on the right side and the shingles are on the left.
Just my luck. And for the next year and a half my neck scar
tissue can get worse so it is imperative to do the physical
therapy a few times a day. Now he tells me!
Life here sure is a roller coaster and it really tests the resiliency of the human spirit at times. For some odd reason I do remember the story of Mitchel's shingles. I have stopped taking the pain pills for them but they still hurt and burn at times.
here is something my Merion pal Miriam always sends me.
Non Illegitimi Carborundum
means "Don't let the bastards grind you down."
now we are pretty aggravated. We were there today at
Hahneman and saw Dr. Brady, the radiation oncologist we have been
conferring with the whole time. And we got a 3rd
Dr. Keane thinks the PET scan warrants seeing a thoracic surgeon. The
lung spots are out of the head-neck area, so he doesn't know what to
make of them so he suggested it is time to see the 'next dr. down' the
body, so's to speak. We are thinking about all this but not doing
anything at the moment. He was losing me in talking about laser
surgery of this and vaporizing that. It was too much too soon.
And I am so not ready for any more.
practice was too much like a factory and not at all on a
friendly/helpful level. There were a lot of problems with
the assistants and we were left standing at the desk a long time at
the end, and finally walked out. I'll tell you more about that
another time. I am tired of hearing about the 'big city' drs. being
better. Here is one case when they suck...he admitted he had
never seen a case like mine or even close [the thymomas].
keane also took me by total surprise and did a fiber optic scoping
AGAIN UP MY NOSE AND DOWN MY THROAT, like I had a few weeks ago in
Vineland. I was fit to be tied - I did not want it - I said to
look at the letter from the other dr. to see the results. He
wanted his own look on it. Now I have pain in my nose.
was a damn unnecessary scoping. When he started to do it; I
protested. He was bent on seeing for himself. What also
galls me is I called ahead of time and got NOWHERE and then I emailed
ahead of time to ask if my case was in his realm of expertise. I
got no answer so I called and the nurse said SHE HAD ASKED HIM AND HE
SAID IT WAS. So then today HE SAID that the lung spots are out
of the head-neck area. Does this sound like he just wants more
money. I HAVE HAD ENOUGH OF DRS. TO LAST A LIFETIME.
took me to the Ritz Carlton's Paris Grill for lunch. For a while
I couldn't eat due to the anesthetic - your gag reflex is numbed too
so you have to be careful not to eat or drink or you can choke to
death. After a while and listening to Edith Piaf, I started to
calm down. It gives me chills up my spine to tell it AGAIN.
I am just keeping tres busy with my projects so I don't have to think
thank you for your good wishes. I need each and every one I can
get. I have read that the more people rooting for you, the better your
chances are. Having an orphan disease means that information has
been harder to find and treatment protocols are not solidly
established. With the funds we get from our upcoming
fundraisers, we strive to change some of that.
is having the colonoscopy tomorrow morning. All today - no
food, only clear liquids or light colored Jell-O or water ice . And
terrible tasting doses phosphosoda. The poor dear. This is
what you have to look forward to when you are over 50. We have
put this test off for sooo long. Please say a prayer that he'll be
today, was the test. Alan is home now and feeling much better.
He said once they put the needle in his arm, he doesn't remember a
thing. They were waking him up! Nerves play the biggest
factor; worry that they will do something wrong. That is really
the crux of the fear. It doesn't help that you sign a half
dozen sheets first ---one of which says, "......this is not an
exact science." It is enough to propel you out of the chair
and out the door, much in the same way their phosophosoda works.
I was a bit ticked off because the dr. told me and the receptionist told me that I could go in to the recovery room and sit with Alan afterwards and be there when the dr. gives him the results - so I looked up at a little after and Alan was walking out the door. He was groggy and the dr. talked to him without me, just what I wanted to avoid. It is bad enough when you are awake to try to get what they say. But as long as he is ok. Alan had a written report with COLOR photos of the interior with him, like a kid with a note from the teacher. Seems like all is ok, for as much as they could see. The dr. said the prep wasn't good [in other words, it worked better after
the test, than before it]. But for what they could see, they didn't find anything but they took a biopsy anyway.
as much as the drs. could see, Uncle's test was clear. The dr.
said if anything big was growing they would have seen it but if it was
small, it may have been blocked from his sight because the intestines
weren't perfectly cleaned out.
opted for very high fat food today. Maybe fasting for a day and
a half makes you crave the greasy life. I ate the same as Uncle
on Sunday ---or rather, I didn't eat. A sympathy fast. We had a
buy one-get one coupon from the local entertainment book at a place in
months of getting an electronic tour of the health department, I
FINALLY reached the correct person [in
about taking a survey here in town and that they would welcome our results.
And she put my mind at ease - to start, we don't have to do the whole town. We can
pick as many streets as we want, as a representative sample. They will determine if there is a cancer cluster and then conduct the detailed survey.
Well here we are in the middle of the cancer incidence survey and we have heard of so many people that have just been diagnosed with it or unfortunately have died, like a few weeks ago, a lovely young lady [in her 40's maybe] that lives here in Longport died of breast cancer . Just awful.
Some streets, like ours, have a cancer incidence in EVERY OTHER HOUSE, on both sides of the street. Another lady I spoke to said her street has an incidence in every house, for 2 blocks. Everyone you speak to can list a dozen houses around them where people have been stricken.
says to keep busy until the next scan. Well, here I go again.
You'll love this - ANOTHER project. I am running for the school
board position here. Can you believe it? There are 3 seats
in Longport. Right now I am just getting the petition signed. Is
there a hole in my head or what? They were advertising it in the
paper and I called the President of the school board for the
candidate's packet. She brought it over and explained it.
Then she told me about this other guy and I am opposing him - - - he
has held his for 18 years. [I met him last summer and he is very
nice]. She said not to be concerned. Alan made me a little
flyer to hand out as I meet people; we also copied an old article from
the Bulletin that described my med tech course at Frankford in the
1970's. That's the extent of my 'campaign.' I don't take
losing well so we'll see what happens.
petition is now filled in and I have to get it notarized. The county
clerk at City Hall will do that for free [she likes Alan's comments on
the zoning board meetings]. It is more fun talking to the people
signing it, than anything else. One of my former students
[Sharon] from Frankford in 1976 signed it. She works at Premier
Real Estate office here [her ex husband's family owns it] and
today I went in for her to sign. She had all her office
colleagues] help by signing the petition, too. They are
all such lovely people. They had all read Alan's commentaries
and his head was getting so big from all their positive comments.
You are right about some people never being happy; Stan wouldn't be whining if he had to worry about his health first. That would pre-occupy his time. Where you geographically are takes a back seat and in the long run doesn't matter at all. Just being counts. Some people aren't like you and Alan [and us] - they can't entertain themselves or be happy anywhere. Sad...their whole life passes them by.
is incredible at filling in grants to all the casinos to see about
them underwriting our 2nd fundraiser, in a year. Meanwhile, I
was at the fitness center tonight for my physical therapy and one
of the trainers just walked over, gave us his card, and said he'd
donate a personal training session to the cause [to auction off or use
as a door prize]. Three of the trainers have done this so far.
Morey's Pier donated an item. I have to make a list at this
the causes that the Foundation is trying to take on, Alan wrote to a
few clothing manufacturers. One of our goals is to have produced
very soft and very comfortable tops for wearing during and after the
radiation burns. That was my biggest problem and still is.
I have a shelf of turtlenecks I can not wear; and even sweatshirts dig
into the surgery and radiation area. Forget anything with a
His buddy emailed me, "IT REMINDS ME OF THE REASON W.C. FIELDS REFUSED TO DRINK WATER--- FISH FORNICATE IN IT !!! "
needed that. Thanks for reminding me; I keep thinking I am
'normal,' whatever that is. I suppose I am blocking out a year
of my life. You are probably right; I shouldn't go near kids
because the dr. said the shingles could be contagious to them also.
know I am with you - housework to me is like Zen.
When I get upset or get bad news, usually the first thing I do is grab
compile results for the incidence of cancer study I am doing here, I
have a 'tutor' in Marin County, CA. who is doing this out there [one
step ahead of us]. She found articles that brought up about
places with water around them having higher incidences.
Some old-timers in the Ventnor and Margate community have some
different ideas on this. One man [an officer from the war] said
that there was a great deal of dumping [maybe canisters of toxins]
during World War 11 by foreign, enemy ships, as close as they could
get to the NJ shorelines. Of course, the beaches have been
recreation for all of us for decades. It is hard not to take a
walk, even ankle length, in the ocean in the summer. It is just
too refreshing. But who knows at what cost. Anyway, he told me
that the canisters have not been recovered and most would be leaking
This is all very frightening. It will take several generations of oral accounts plus the scientists to get us some answers. In CA., she wrote me that 'they' poked holes in the canisters [??????go figure].
You are right about diets. Some reason is applied so you can splurge on the goodies. But not too much reason, as I learned. If it isn't Saddam it will be something. AN extra 10 or 20 pounds won't make a difference - YIIIKES - to the undertaker, and it is a cushion everyone needs. Sooner or later everyone gets ill and needs to ration, as we found out.The stores of fat are then so important.
builder who put in our patio, John Regina, has remained in
contact with us especially thru this past year; he was very concerned
and offered prayers often. Today he called. His brother is
where I was at one year ago - he is 56 and needs a neck dissection to
remove a large cancerous growth. We talked and gave him as much
information as we could to help him help his brother. He said
his brother was the healthy one in the family and very careful with
what he ate and drank and exercised. It seems like a freaking
I had - finally - the follow up ultrasound from the lump in my breast
from October. I have been putting it off indefinitely. And
it was fine, they said. Some good results. YEAH! The
imaging center is warming up to me [their best customer]; the dr. came
in and gave us the results. So I wouldn't have to wait and be
tortured. Alan made a pitch that they should donate some to
our Foundation and we left them our literature.
We chatted civilly awhile, for example, the radiologist said we didn't need to send the formal letter with our request since they all know me so well there now. It is good not to be anonymous when health care is concerned.
for some unknown reason, the shingle pain was very prominent. My skin
burned and hurt and my back and shoulder hurt. Almost like it
was the day before I broke out in the rash the first time. So I
am hoping tomorrow or the next day is not a repeat. The sores
are still there, not getting any lighter, but until now, they haven't
gotten worse. Next week is my appointment with the
dermatologist and I hope I don't need him sooner. When days like
this happen it is a sudden lurch that brings me back to reality.
saw Emily on Friday night and she has so many contacts, my head
was swimming. Some are with the casinos and she is going to try to
help us get a sponsor for the luncheon. We are looking at April
18, 2004. We are going to a fundraiser with them in 2 weeks
where she will introduce us to some of the people in the community.
Joel Kauffman wrote me that he found that high cholesterol levels are part of the body's defenses against a number of common ailments. He said, "Your high levels are what I now see as the long-term defense against thymic cancer. Yet another reason why those levels should not be brought down." What do you think?
trying to keep busy, for self-preservation, as you well know.
Through another 'tour' of many facilities, I got in touch with the
tumor registry at Shore Memorial Hospital and they, after a long wait,
gave me some numbers for total cancer incidence in Longport. They
needed to keep going up the hierarchy to get 'permission' to divulge
the numbers. I felt like it would have been too much
pushing - at the present - to ask for a print out according to each
type of cancer [but I can get that later or even have the people in
Trenton get it]. Now that they are involved, so much more
data can be extracted from recalcitrant sources. Ironically, did
you see KWY's news blurb last night on the high rate of cancer in PA.
Thanks, yes - my nose is almost done bleeding now. It is just a few spots a day so that is good. Well, I took your advice and spoke to the thoracic surgeon's office. It is a good thing I checked out a few things. The main thing is that if I went for an office visit, it would have been a waste. The nurse told me they need a CAT scan of the chest to know anything. All I had was the PETscan but I have a script for a PET/CAT scan at the end of March. The imaging center is getting a new instrument that does both at one time. So we are waiting for that to be calibrated. So then if the results are still the same I will go back to Jeff.
Thanks - after a few minutes of exercising the dizziness started to pass. I know it is this one medication I take and I figured I could do one of 2 things. One would be pass out or the 2nd was to exercise and speed it thru my system and get the side affects over with quickly. So by the middle of class I was almost normal [whatever that is for me].
Thanks for putting me in touch with her. She is just the type of dr. I like. She told it as it is. We were surprised to hear that there can be long term effects on the blood vessels from the radiation therapy treatments. Like blocked arteries, etc. She assured me it won't happen this week or even this year. It was impressive that she trained at the Cleveland Clinic - that is world famous so she brings with her a lot of good experience to your practice.
won't be home, unfortunately, all day tomorrow since we have drs.
appointments all day tomorrow - first an echocardiogram in Cape May
Court House at Burdette Tomlin Hospital, then the dermatologist to
look at my shingles and then we have to go up to Somers Point where
Alan has his post -colonoscopy visit and we get the biopsy results.
I really don't like days like that because they tire me fast and for a
few days after I have to rest.
thanks for passing on the IGive site to Sarah. She used it and
$5.00 was donated to the Foundation for the first time she shopped.
It is starting to catch on and we appreciate your help. We use
it on the average of once a week. Every little bit adds up.
pays to know the people in your community and store owners. Last
night we took my RX to CVS for the anti-viral to get filled and the
pharmacist said it would be 45 minutes. I said we didn't want to
wait because the roads were getting slicker by the minute. I
said the dr. wanted me to start it right away so she gave me 4
immediately [no charge - just would be subtracted from my total]!
And today we picked up the rest.
From there we went to Boscovs. We had an appointment with their administration to tell them about the Foundation and they offered us a lot of help. They can't write us a check directly but they can do things like print us flyers and advertise our events for free. They said they could host a fashion show to raise money for the Foundation and all we'd have to do is sell the tickets. They'd get local TV personalities to model. There IS a Mr. Boscov and he seems very generous. They will donate door prizes and auction items [like fine china], let us use their auditorium free for any meetings we want, and they will invite us to participate in events that could raise money for the foundation. It seemed too good to be true.
I forgot to tell you that yesterday I spoke to the dr. and she said my echocardiogram showed my heart is in good shape. Imagine that! Globulets of high cholesterol fat cascading in my body [according to the so-called experts who write the table of 'normal' values] and my heart is the better part of me. She did say there's slight mitral valve prolapse which we knew. And she was thorough in answering a few other questions I had.
Are you interested in working with the Ventnor, Margate, and Longport police on the domestic violence counseling team, by any chance? I think I told you I signed up for it and the Margate police called me today and they need to recruit 5 more people. If you want more information on it, I can tell you what I know, which isn't a whole lot right now but it is a good cause. They will be setting up a safe shelter in Margate for the victims.
The anti-viral stops the spread of the virus but doesn't do anything for the pain. What the dr. was suggesting I do is to up my dose of neurontin - that is the medicine I take to keep my trigeminal neuralgia pain in my right cheek to a dull roar. He said they just learned it is supposed to help shingles pain. He said if it doesn't, he can prescribe heavy duty stuff for me [but I will decline that unless it gets too bad].
The Foundation website has had over 1000 visits! One man has a dr. who said his cancer can't be thymic due to the type of cell that came back in the biopsy. The dr. is wrong as my later biopsies after the operation showed. Many drs. have no clue as to this type of cancer and they even confuse it with THYROID. So Alan was able to direct this poor man.
in the last week we were able to talk to 2 people that were diagnosed
with neck cancer [exactly where I was a year ago-how eerie is that]. The
2 people are related to people we know who have brothers with the
neck malignancies. It is frightening how common it is. We
referred them to the website for some help.
are starting to get great donations coming in for our aerobic-thon.
The letters we wrote a month ago are being acted on. Some high
speed jump ropes were donated, some of those tube stretch bands, and
today we received 2 all-day passes to Morey's pier in Wildwood. These
will be door prizes or go to the person who gets the most
sponsorships. One clothing manufacturer told us to go to his
internet site and pick out an outfit that he'll send to us to give as
a prize for the person who gets the most sponsorships. It is
worth over $250.00!!!!!! It is challenging planning 2
events at the same time. I can see why Foundations need
realized yesterday that July 23rd is our 40th anniversary of our first
date. What a way to celebrate.
I went to the dermatologist - he looked at my shingles. He
unfortunately saw new spots and put be back on the anti-viral.
He said the shingles NEVER return to an adult if they have them
------EXCEPT in people that are immunosuppressed. Drum
roll...please. See how one thing leads to another. The radiation
therapy really did a number on my body.
we went over to get me an echocardiogram my new cardiologist
ordered [hadn't seen one since we lived in PA.] . She is just the
type of dr. I like. She told it as it is. She did
not give a 2nd thought to my cholesterol ringing in at 380 since
I have more important issues. Like blocked arteries
from radiation, etc. More like 10 years. She wants me to
wear a heart monitor for a day because my pulse has been over 100 too
much since the jugular made its exit . I'll schedule that in a
had never been to that hospital but my radiation oncologists are there [right
around the corner] so we stopped to say hello and show him the
decorated mask. He hugged me when he saw it and the Foundation
world...the tech who did the test works for the
primary, one day a week.
the afternoon we had to go up to Somers Point where Alan had his
post -colonoscopy visit and we were to get the biopsy results.
We sat and sat for over an hour and were nowhere. We asked the
receptionist what the dilly-oh was and she said we wouldn't get back
to an examining room for yet another 45 minutes. Alan said we
have to leave; we were both furious. The blue cross
handbook said waiting beyond 30 minutes is unreasonable. All
this to pick up a paper for his report. We asked for a copy of
the biopsy report and the check for our deductible back; they sure are
careful to collect it in ADVANCE. The girl was taken aback.
We got it though, plus the report but they were quite flustered that
someone did this.
The dr. redeemed himself. About 6:00 he called Alan to talk to
him [I was debating telling the girl to tell him to call - like a
final exam - but I didn't]. He read my mind. Alan
was ready to write a column on the experience. These recent
insurance changes are creating havoc.
just got home from a benefit auction. Our friend was on the
committee and said it is always a
good affair. So what did we bid on - none of the dinners, or beauty-salon
packages, wide screen TV's, Seinfeld or Bon Jovi show tickets...not the
'fun' stuff. They were auctioning off a new state-of-the-art CTA [coronary
artery] scan that is done in only 3 places around the country and costs
$1500.00. It is supposed to show the levels of calcification, any
blockages, etc. Insurance does not cover it at all; I have tried over and
over with scripts written from my drs.but they do not cover the test. So
silly - since it could save them tons of money in the preventative factor
alone. The drs. that own Atlantic imaging center put the item up for bid
and as we usually do, I wait until the auctioneer is closing it out and then
jump up. So we got it for $450.00. A real bargain. The owners of the
center were there and I bet I can get the item for our own auction when it
is time next year.
for the compliments on the website. Running a Foundation is
full time job. Planning 2 events is overwhelming. It has snowballed.
People have heard about the aerobic-thon and want to host one for us so we
are doing July 12th and 5 more after that [not scheduled yet]. The
luncheon is also tough work. We need a place. The casinos haven't been
The writer from Ocean City is writing nonfiction. The book is about - GET THIS! - preventing cancer. He is not a dr. or any type of medical professional. It is all self-taught hence his difficulty in finding a publisher. He is having it printed in France. He believes that if you take certain over the counter enzymes you won't get cancer. One is pancreatic enzymes [I think he said amylase and one other]; the other is B-17, a derivative of laetrile. Yikes. We didn't know what to believe as we listened to him. He typed it by hand because he said he can't use a computer; surgery on the right hand. I said all you need is one finger on the other hand to poke and peck. So he said that narcotics messed up his mind [pain pills for his hand surgery]. He works at Boscovs by day and wants to write full time. He wants to meet again really soon.
Like you, my exercise schedule comes first, especially since the surgery and radiation. The drs. all say I must do it - physical therapy is to keep my neck from getting so stiff that it wouldn't turn. They removed a big muscle from it with the tumor. Then because my jugular was removed with the tumor, they want me to start adding some aerobics because it would be nice if a new vessel took over. And because my cholesterol is so high and I can't take the statins, exercise is my best medicine they say. It is hard because I get very tired but I do it.
we came home, Alan played the answering machine and there was a long
message from Vincent Irizarry, Dr. David Hayward on All My Children. My
ears could not believe it. Everyone thinks their agents would
call. Such a wonderful guy. He would be the star event at our
celebrity luncheon. He has been on other soaps and Beverly Hills
90120. We are still working on which casino will give us the
drs. don't think stress causes the shingles much anymore - it is the
virus hibernating in you since chicken pox as a kid, and due to the
way the radiation knocked me for a loop, it took over. I do some
yoga and meditation. Some Pilates.
EGO! Now I have the residual bleeding and pain in my nose.
Terrible. I bet he does it for the insurance money. You know, in his
waiting room, most of his surgical patients had those voice simulators; in
Kelley's, we never saw ONE. Same type of dr., same cases - Kelley warned
me I may need it but he was skilled enough to avoid it.
All night and today, I was fighting dizzy spells ---it seems like since they took my jugular out, my pulse is off the charts and today it was 102. It is almost a year and of course when I am in the drs.' office it is normal so they haven't given me anything for it yet.
You are right - I am sick of the scans and tests but you are right twice. What can I do. Life will never be as it was b.c. Funny how when I was told a year ago, I wasn't phased by the fact that I could die really soon [like from the surgery]. But now, as long as I can feel sort of ok, I want to have more days. . . to walk on the boardwalk, to have a celebrity auction, etc. So the scans are a means to this. Believe me, I don't know how I'd react if I needed more than a non-invasive scan now and then. It is all relative. They have become the norm now to me. Any more therapy or surgery is something I don't think I could deal with.
coronary scan will be March 24th; they are very booked up at AMI,
already. And probably 6 weeks after that will be my PET /
CAT scan. The instrument is taking some time to build into the
room, they said. Back on the road to seeing drs. again. Friday I have
to see the primary [it has been months]. There is a
swelling on my right calf and the dermatologists felt it may be a fat
deposit or something like that but who knows. Wish me luck.
week I go to the cardiologist to get that heart monitor for a day.
Have to keep a diary so they can interpret the readings.
are dizzy. So much is happening...each day. Alan got a
designer from the Style channel to volunteer to decorate a shirt that
a cancer radiation patient could wear comfortably. He'll sign it
and we can auction it off. Is that too amazing. He has a
website and his clothes have been in Elle etc. I think his name
is Sully Bonnelly. This auction will really shape up. Today 100
free tubes of toothpaste came that we can put in the gift bags of each
attendee. And some great exercise kits - a Pilates one, a yoga set,
and a big ball. This is really getting to be fun.
We had to go to city hall this morning because the county clerk was picking the ballot position. The probability is good if you are the first name on the ballot [people get lazy and just push that tab in]. I was hoping for number one, but they told me I was number 2. The school board president made two labels and put them in a wallet and SHE picked. Before I had a chance to say "Let the bit Mayor pick" - it was over.
was kickboxing and I did almost the entire class. Then we went
out for pizza with the instructor. So much for shaping up.
I did order part skim cheese ..
Yes, there was a long period where I couldn't do kickboxing at all and then only 5 minutes. It is an emotional time now since it is exactly a year when we had that cervical scare with Dr. WU, the operation was almost called off, and then we were saved by the Temple dr. who examined me and said nothing was wrong. The CAT scan mistook benign nabothian cysts for a huge mass. It was a nightmare.
Today I saw Dr. A. about this lump we discovered on my right calf. Did I show you? TO be on the safe side, I will have an MRI of the area on Wednesday. He said it feels good and he hopes it is just a lipoma [I hate words that end in 'oma' anymore.] But that would be good ---just a fat body.
listened to my lungs a long time and they were good so my cough could
be from my burnt esophagus, trachea, and pharynx...... STILL! Or
complicated with a post-nasal drip. He was concerned how hoarse
I am but glad I will get the CTA scan. He said it is much better
than the EBT at U. of P. He just came back to work after a
hip replacement. He looks good, is moving well, and did you know he is
53. We thought he was much younger. He lives in
Longport and will vote for me. And his parents are disabled, so
being the PHila. politician transplanted here, I took two absentee
ballots to him for them. This is so much fun.
Nicole cut my hair tonight and I let her have her way with it and 'fix' the color. Never had it colored before. She and Alan think it made me look 10 years younger; I was very nervous because of the fear that the harsh chemicals would be bad for my hair, which is the weakest it had ever been. It only just stopped falling out in big amounts and started growing again. SO we'll see what the next few weeks bring.
It is not the party ending that worries me, it is the suffering till they turn off the lights. My father went so quickly; a few hours and that was it.
You are right about the cough, most likely. If it is benign and just a trauma left from the searing radiation, I can handle it [but in the back of my mind are those 2 lung spots from the last PET scan and Keane recommending a thoracic surgeon].
I am sorry to hear your brother will have to lose perfectly good teeth. He sounds very brave. It is probably harder for the family to watch than the patient who has to bear it. Mainly because the patient can be out of it due to all the medications.
After the surgery, it was extremely difficult for me to swallow without choking [the entire neck was swollen, parts were re-aligned due to the removal of the jugular and the area was sensitive from the 9 hours of anesthesia]. I could only drink with a straw and had to hold my head in a certain way or I'd choke, to the point of not being able to breathe.
This abated very slowly and the radiation started before it ceased altogether. That is what made the radiation so difficult for me. They put a mask on my head and bolted that to the table for each treatment. My neck was tilted back in a horrible position so the cough sensation would start. And I couldn't swallow in that position. Try laying on your back, on the bed, FLAT, hang you head off of it, lower than your chest AND TRY TO SWALLOW. TRY NOT TO SWALLOW FOR 5 MINUTES OR SO.
radiation was much worse than I anticipated. The
mask they made was intensely tight on my face. It wasn't that
way when they tried it on during the simulation [that is when they
tattoo you]. I had several panic attacks, at
the beginning [never had them before in my life]. It was pushing
my nose flat, it was so tight; it was pulling my eyes to the side of
my head and pushing my contact lenses into my eyes and it pushed my
lips closed so I couldn't talk or call for help. I didn't know
how I'd endure it. The worse pain was it pushed my cheek where I
have the trigeminal neuralgia. And then they screw it down into the
table and there is absolutely no leeway.
The dr. said to have the technician cut out some of the mouth, for release; or it will have to be made over. The problem is that the skin was so sore still from the surgery. But the social worker was a huge help, being a liaison between all the staff.
The funniest thing happened; she handed us her card and when I saw her last name, I asked if she was related to a dean I had when I went for my education degree at Temple Univ. in the late 60's. Turns out it is her father and he lives in Linwood now. He was instrumental with me going into teaching and back for my master's degree;
and we had kept in touch while I was in the school system. What a small world.
I kept thinking that this was a good omen - all during the treatment – and it went a little faster for me. Not easier, but less of a panic. . I am not usually like that. The initial biopsies, tests, and surgery with its blood clot and hemorrhage were easier to take than the radiation treatment.
Tell your brother to use imagery. My friend [an artist], said to envision the cancer cells as criminals ---very stupid, inept criminals, and that the radiation will kill them. You know, like those stupid criminals that Jay Leno reads about.
found an article about drug enforcement agents in Northern CA., that
say the fumes from methamphetamine during their drug busts have caused
them health problems, like cancer. It named a few agents and
their types of cancers. One man had thymoma [similar to what I
had and also it is rare]. After one month of searching, I found
his email and phone number and called [left a message]. He
called me back and we had a long chat today. Any case similar to mine
could be a help.
reason I am so interested is because when I worked in the labs in the
60's and taught the rest of the years, I ALWAYS came in contact with
carcinogenic compounds but at that time, they didn't know the extent
of the damage they could do. I breathed benzene rings routinely.
I sloshed formaldehyde on my skin. As I read about the agents, I
thought that maybe we could share information and find out more about
lab chemicals causing cancer.
Mike, the agent, was so nice. He had his surgery 6 years ago [his cancer was attached to his lung and he needed a heart surgeon handy]. He said they can't wear masks or respirators because they are carrying long guns [it is just like a movie] and it would interfere with their aim. He was telling me how the fumes can be even more toxic depending what the baddies cut the drugs with.
I get the heart monitor is to see how my pulse [heart rate] is doing.
The dr. said if it is high ALL the time then that is not good.
If the 24 hours shows that it is high some time and low others, that
is better for me, health-wise. It is a big strain on the heart
and the rest of the circulatory system if the heart beats over 100
times a minute. Since my jugular was removed, my pulse has
raced. The body tries to compensate but it is difficult till
some new vessels can be generated, if they do generate.
other news of the day is RESORTS CASINO came through for us. We
are having the luncheon there on Sunday April 18, 2004. As long
as the USA still exists in a year, right? Write it on your calendar
and maybe you can come with Alan and even Jodi [and your
daughter-in-law and Carl]. We will need help selling tickets.
I am sitting at the computer and very uncomfortable. I have the
HOlter heart monitor hooked up - since 4:00 this afternoon. The
lady who put it on me started to take like an emery board to rough up
my skin first. You should have heard me in Phila. - it was
on the skin that was radiated and that is still so sore to the
slightest wisp of a touch. I can't even clothe the area and she
was going rub it so they got a better reading. Then she said I
couldn't take a shower tonight because of the electrical leads ---I
said this test is not going to happen. I may not keep the wires
on 24 hours. After she attached everything [which first I made
sure were sterilized from the last patient], she told me to
carry on normally so we went to kickboxing. It was hard because
I have a recorder in a leather pouch with a shoulder strap so it bops
around and up and down as you move.
least we are off our very weird schedule - this weekend was very
exhausting, especially for Alan. He took the motorcycle course
in Gloucester Community College [an hour and a half away, each way].
So Friday night he got home about 11:00 and had to be there the next
morning at 6:45 a.m. So it was up at 4:00! Me too.
He did pass the written test yesterday with 100. Tonight his
mother told us that even as a boy he always talked about getting a
motorcycle, even before a car. It is very difficult here in NJ to get
a license; he has been looking at the process for years.
was the driving test and he was worried but he passed so he got his
license. One lady failed because the cycle dropped. That
is a no no. The class was made up of a musical conductor, 2
police men, a NY architect, etc. All professionals. We
have learned here that mostly all of our drs. have motorcycles.
The Hell's Angels image is going.
came in at 6:00 on Saturday and we had to leave at 7:00 for the
Stockton College performing arts center. We had bought tickets
last fall for the one man [and pianist] Groucho show. Alan
always wanted to see it. You 2 would love it; it is up your
husband's alley. I rate it an A ++++++. It was terrific.
The only problem is I dislike immensely being in crowds. There
was so much coughing and nose blowing and the seats are so close
together, like the man next to me was much closer that I ever would
want. And the lady in front of us had on a perfume that smelled
like one of those magazine inserts and all I could do was cough
because my throat was closing up due to it. I really don't want
to do that again - movies, shows, crowds.
primary, Dr. Anastasi, called today and he still wants us to
watch my leg because he is not sure what it is now. He was
surprised that it is not a lipoma but he told us what to look for.
He is a great dr
don't know what to speculate about my leg thing. I would hope
that it is a contorted muscle or something. But what do I know -
just once in a while that leg gets a muscle spasm and knot.
Weird. And very painful. Time will tell.
a $250.00 gift certificate was promised for the auction, by the
furniture store in Somers Point. We just can't believe all this
generosity. Then a manufacturer sent us 24 DOZEN tees to be used
to give out to neck radiation/surgery patients.
pulse has been over 100 since the jugular was taken. The monitor
confirmed that; I need to get in touch with the dr. - the report says
something about a blockage in a bundle and a few other things I don't
we went over to Boardwalk Bank - - - they donated 200 'chip clips' for
the luncheon gift bags, next year. The aerobic-thon bags will be
nice and full. Next time we see you, I will bring the poster Alan
designed. We have one printed out for you to check over before
we mass produce them. We can read it a dozen times EACH and not
catch any errors.
damn cardiologist never returned my calls; now I am starting to get in
a huff. So I have no answers what it all means. Sinus
rhythm may be involved - I have no clue yet.
We are dealing with another consumer issue. The one thing that was supposed to be fun is now a hassle. Nothing is easy. He first ordered a Yamaha. Well he gave a $500.00 deposit and they called and said they wanted ALL the money in advance before they order it. I think not!!!!!! No motor vehicle sales is paid in full before you pick it up. Alan tried to reason with them and got nowhere. They said it 'was their policy' so IF it was their policy why did they only ask for five hundred when we were there Monday.
put a dispute in with the credit card company, went to Honda and
ordered one from there. This better go smoother. Meanwhile he
compared prices of the original bike and found out from another YAMAHA
dealer that the first one was overcharging him on many things,
especially what they call freight.
were up early today to take the rifle course at the state range.
Now that we passed, we can go back and practice with the range
officers anytime we want. We got NRA certificates and I hit my
'pie plate' target nicely. It was an excellent course,
emphasizing safety, first and foremost. We learned a lot and
enjoyed the teachers and our classmates so it was a fun morning.
Alan had gotten a new rifle that he never shot so it was exciting for
him. It is a M-16. It is a modified version of the assault
rifle [NJ makes the manufacturer put certain modifications on it so it
is not the same as the original army version]. We are ready in case
any enemy ships land on our beach and try to take over our town.
During WW11, we heard from older citizens that the ships WERE out
there, in the
bottom fell out today for us. We have a lot to deal with all of
a sudden. After the CTA scan [which I had this morning and I had won
at the Ride the Wave auction], a few hours later, the radiologist from
AMI called us and asked us to come back over. It was so ominous
that I was frozen to the chair and said please just tell us and we'll
come over another time.
He said the coronary artery disease the scan showed is very significant and needs attention but that is secondary to bigger problems I may have that need immediate attention. He said their are new spots on the lung and he sees a lymph node that must be addressed, and a finding at the juncture of the aorta.
Life just stopped and we started calling some of my doctors. Dr. Kelly, my surgeon, called and said he wants to take a measured approach and sit tight until I get the PET / CAT [about a month until the new instrument is up and running]. He wants us to try not to worry until there are tissue samples taken and examined to confirm what the radiologist hints at. He said this CTA test is designed to test vessels and not measure cancer growths and he'd feel better finding tests to evaluate the problem. It all makes sense so we are using this as a calming mantra, to the best we can.
Kelly said taking a biopsy is not that simple; so far the size of what
the radiologist found is very small and a needle could easily miss it.
It would have to be a Needle-guided CAT scan biopsy and even then it
is not certain they will hit the right place. He said he hates
hunting expeditions. Of course there is always exploratory
surgery to find the spot. Which doesn't sit well with him...or
us right now.
He was most calming even though we are still really concerned that we don't know anything for sure. He tried to assure us and prepare us for the fact that any abnormality with me from now on is looked at seriously. He thinks the radiologist was out of line for speaking about all the problems he saw without benefit of talking to my drs.
Cassir, the radiation oncologist is of the same mind but said I should
have a Cat scan of the lung if I can't wait a month. The
radiologist today said if I could get an appointment at Sloan
Kettering sooner than their machine will be ready, I could go up
there. Truthfully, I don't feel like it. We were hoping that
after the last assault, we could put it behind us just for a little
we are doing better at it. Dr. Kelly was most calming even
though we are still really concerned that we don't know anything for
sure. Even if the next scans are okay, there's always
the reality that some time the news will come up against me. It
is a cold sobering process when they deliver news about you that is so
tried to pretend we were doing some normal things today, like starting
spring with a Rita's water ice. It was a good omen - for years I
have been hoping we'd go there and they'd offer cappuccino...so today
that was on the menu.
stopped at Home Depot for some plumbing parts and I threw 3 dozen
pansies in the cart, one orchid plant, and a palm tree.
That should perk up the 'estate' a little for its owners.
tonight I did a brave thing; I consented to going on the back of the
cycle with Alan. Here's the scoop - I like the clothes
[tomorrow we'll take a photo ---I was too scared today].
The ride around the block was scary. He loves it - et moi!
It was totally frightening to me, and I am sitting there thinking how
the last day was so frightening and this ride was to be exhilarating
but instead I was thrilled to get off of it. I suppose I will
get used to it. We stopped after a block and a half at the town
gazebo and talked to the Mayor who was hanging a 'support our
soldiers' banner. Another good omen - he went to the same high
school as me and gave me a 'fight