November 3 to December 28, 2002

 

   

 

 

11-4-02

 

Today we went to the dermatologist to get his opinion on several issues.  I wanted to see if he felt it were hives hence an allergy.  But he didn't think so.  He feels it is an internal inflammation that spread to the lymph glands nearby because of the reaction that I had red lines running up from.

He said the hair falling out now [4 months later] is normal for radiation because of the stress the body underwent. He feels it will grow back one day. But he said, as all the other drs. have told me, that the scar tissue from my surgery can actually get worse. The radiation does that.   If the radiation is strong enough to kill cancer cells, then it is strong enough to fry your good layers of tissue too What I have to learn is what feels 'normal' for me now and what is not a good sign.  It is all so new right now.

The two 'nevi' that the gyn identified, he said he'd leave alone for now.  Though radiation promotes the growth of more moles and skin cancer, he thought mine looked normal for now.  There I go getting jaded again; it didn't bother me in the least [ahead of time] that maybe I'd be under the knife today.  There's a point when you get so overwhelmed that you find it hard to feel anything.  He didn't render too many other opinions but defers to the PHila. drs.  No one likes to answer any questions. Circles.

 

So we left there and went straight to McDonald's.  Now there is a meal for you!  We let out our inner frailties in great greasy food.  That is for sure.  I was so in the mood for it after the appointment.

 

So far I haven't scheduled any PETs or CATs; I am just laying low until I can catch my breath.  The PET should be in Dec.   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-like the snipers].  He wants me to have a special CAT scan with ultra fine thin sections.

 

11-6-02

 

I am picking up the CD for the PET scans, finally, at the imaging place.
Monday I will be having the CT scan with intravenous contrast [by ultra thin
section technology].   And I will pick up the PET scans on a CD... I told
you that story [the first 6 people I spoke to there, your basic lackey, said
they didn't have the technology to put the PET on a CD and furthermore,
patients couldn't request that].

 HAHAHAHA---wear them down, the Neibauer school of obtaining.  If one road
is closed, I always take another.  I called and asked to talk to the
radiologist; of course, I was told that "we don't usually LET patients talk
to the doctors."  SO a new imaging place just opened on Bethel Road -
COMPETITION - and I said to the girl maybe I'll take my imaging there.
Within an instant, the dr. was on the line and I explained how rare my
malignancy is and how Temple is doing a journal article and of course, his
films will be cited, blah blah.  And then I asked if he'd like a copy of the
article.  And while I was at it I gave him Alan's website.   Before we hung up, I had everything I wanted.   You have to be so tough these days.

We did go to Cowtown today and it was reminiscent of Rice's Country market
in Bucks County .  We found a lot of little things to get - some makeup for
$1.oo, a belt for $2.00, some bath gel for .50, a 72 inch bungee cord for
$1.00, and a bag of just roasted peanuts.   Then we went to this restaurant
called Kountry Kitchen in Elmer , NJ .  It is really pretty rural around
there, lots of farms, and a nice change of pace, and even a town called
Mitzvah, of all things.

The restaurant we ate at was in the entertainment book and had a sign in the
lobby "For sale - piglets."  I'm thinking more on the line of a rooster to
aggravate the hell out of the 'neighbor.'

No doctors appointments on Wed. - yeah - a day off.  But I do have to talk
to 2 of them.  But at least I don't have to get undressed to do that!

 

  Always remember to be prepared ---it wasn't raining when Noah built the ark.

 

11-7-02

 

We are coming up to Phila. again on Tuesday to Hahneman [for the radiation oncologist] and also have to come to the Fox Pavilion in Jenkintown to the dentist [Alan is having toothal pain].  Dr. Brady is a radiation oncologist that has been President of every radiology association according to Harold; Harold Weiner is a radiologist, recommended him back in the beginning.    Harold studied under him for a fellowship on radiation oncology.  Dr. Brady [Harold told us] has a CV of 100 pages.  Some of it may be on the internet.  He is also a benefactor of the Academy of Music .

 

You're right about fighting for patient rights. Most drs. are fine ---we found that it is some office staff that gets on a high horse because they think they have a little power.

 

11-8-02

 

 Our new neighbors are very very nice and just like us in so many ways.  They are our age, no children, and like their environment as we do [QUIET, CLEAN, and free of excess unsightly objects, like street signs,etc.]. I pity the excrement across the street after they move in because they definitely told us they will not tolerate any barking.  So it almost doesn't matter what happens on 11-21 at the hearing.  The barking is as good as over, that is for sure.  These people are strong.  She went to city hall before she moved in and said she doesn't like looking out of her window and seeing 9 street signs.  SO the public works department removed 4 of them already!

 

 You are right about the waiting.  People that haven't gone thru this have no idea how we have to live the rest of our lives [in fear it may return].   So it goes without saying that we need something to keep our spirits up while those around us are falling flat on their face with meaningless comments to us.  Sometimes I think that when you have cancer you become the only sane people  on the planet.  You see things a bit more clearly than others.

 

11-10-02

It has been warm out so this weekend that we washed out the garage - all the summer sand; very ambitious. People kept stopping by as they were out walking so we  didn't get much done for all the talking.   Many of the people  heard about the weather and came down for the weekend.  Then we cleaned our upstairs deck [it was covered with black - sand - beach sea grit.]  The lights, railing, and furniture get covered in it so we don't want it to accumulate for too long or else it will never come off.     

 

Tomorrow I get a special ultra-thin sectioned CAT scan [to see how my neck is doing - and to monitor the spot from the PET scan, which we hope is nothing].  And then Tuesday we go back to Hahneman to  have the lump looked at; I hope they don't have to biopsy it.  That freaks me out. People say it is nothing compared to my surgery but I don't think I am ready for any pain whatsoever for a long time to come. The red lines are gone and the lump has reduced in size.

 

11-13-02

The test was short in duration compared to the PET, which is near an hour ------flat on your back.  This one, finding the vein and doing the radioactive injection takes longer than the test.  Once she takes a few baseline measurements, she told me to lay perfectly still since the scans only take 27 seconds.  27 SECONDS!!!!!!   I find that remarkable. When I had it done at the hospital in August, the machine must have been ancient because I was under it about 40 minutes.

 

My natal day is Saturday but we are telling people - please no presents.  We have a better idea, for when the time comes.  I told you that we are looking for a newer technique, just in case, this lit-up area is on my recent PET scan is not an artifact.   [like smart bombs or monoclonal antibodies] .

Several medical professionals have given us the encouragement to start a
Foundation for that research.  So  if they used their medical expertise to
give me a 2nd chance, I have to now give back something to others in the
same situation. As I get my energy back, we are  starting  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.  The organization is dedicated to providing support for patients with
thymic-related carcinomas in particular, but also to patients   treated for
neck cancers in general.  We hope to develop a database of physicians,
pathologists, and other  medical personal with experience in thymic-related
cancers and carcinomas.

Instead of gifts [I don't need anything -  really, except, good health
again], it would be nice to get donations to the Foundation so we can get
started helping other patients. We will have fundraisers when I get my
energy back and can plan them. One may be an aerobics class, in Somers's
Point, where people can pledge by the minute.

 Right now we both are still exhausted.  A very long and tiring day yesterday.  Would you believe, both of us have colds.  We have tried so hard to avoid this and now we have noses like faucets.  And I am coughing, with sometimes a wheeze, where I can't catch my breath.

We went up to Hahneman to see the chief of radiation oncology and he had just
received the ultra-thin slice CAT scan results.  He said there is some soft
tissue on the left of my neck, that the radiologist who read the scan, is
worried about. He wrote, alarmingly, that  it could be the malignancy
re-growing.  Scared the merde out of us when he wrote it.   The dr. said
that he knows my neck better than the radiologist at the imaging center and
they'll watch it; he is very low key.  Hope he is right.  Probably - he
thinks - it could be scar tissue and burnt radiated tissue.  There is
another spot near the larynx that needs watching too.  The radiologist
suggested a scoping [which we will try to put off].  He seemed confident in his theory. Maybe this is
why my voice has been so bad each morning. Of course, it leaves you with a
constant feeling of uncertainty.  Who is right.

One reason I tend to trust him [This is so classic - you can send this to Rich too, if you want], is that the radiologist from the imaging center said he sees that NO BLOOD IS FLOWING THRU THE JUGULAR.  Duh---and double duh!  They took out the jugular.

 

You know, he didn't say anything about a breast biopsy so we didn't bring it
up.  I suppose he and the resident were satisfied with what they felt.
Feeling lousy, I felt that if it is needed, when I see the gyn or go back to
Jefferson , they can decide.  When you are tired and not feeling good, the
last thing you want is to undergo more needling.

Before we went to the dentist for Alan, we met Rabbi Andy at a restaurant in
Elkins Park called Marco Polo.  He called early that morning to see how he'd
recognize us.  Alan told him I resemble my sister.

We had such a pleasant time; I brought my photos of all our soap opera
events because he used to live in NY city at an apartment next door to the
ABC studios where our shows were filmed.  He said many of the stars we
showed him lived in his building or he'd see them going in and out.    He
said he has no interest in sports and barely understands it. 


Then Alan saw the dentist in Jenkintown. He took an x-ray and doesn't see a
cavity and wants him to watch it for 2 weeks.  He said something about a
hairline crack and a crown and root canal.  We hope it is nothing. Much
driving in the pouring rain.

Finally home after 9 hours out.

 

11-15-02

The dentist is the only dr. we haven't changed yet.  You're right ---it is a
very long hike. But, he meets my very high standards of avoiding all
cross-contamination.  I sit and observe, looking for any breach in the
process, and if I find something, he welcomes my input.  I am nuts about
that stuff, OCD.  But I will keep Bob Farber's name in my book.

                 WHAT IS IN THE AIR?

A diversion from the bodily problems, that's what.   One  night we lost the
power here 2 short times and then the 3rd time, it  was for a few hours. The
cable went out too.    So we used candle power.  But one leaked on the
carpet so now we have to try to get the RED wax out.  This  happened last
spring and I JUST got the orange wax coloring out. After mucho  scrubbing.

Here are my escapades from the other day that made me ALMOST feel as if life sometime could return to near normal, maybe.  We went to  the little SHoprite of Horrors.  It was a zoo.  They must have brought every  senior citizen home in at the SAME time.     I was minding my B-I- Business ---pushing my cart---and this lady comes up to me and real LOUDLY, says, aren't you the one looking for the DEPENDS?  After I crawled into the shelf......I told her no, she is confused.  Either her eyes are very bad or I look very bad.

 At one point I couldn't move my cart an inch down the papergoods aisle
because 8 old old ladies were teaching each other about Kleenex.  I tried to
reach around them for what  I needed but they wouldn't budge.  Others  were
losing their  patience with their blockade too.

 Then the final straw came when we went out to our car and Alan said, "It
looks like our car is blocked in."  Some idiot pulled behind our car, IN THE
DRIVING LANE.  There were no yellow lines where he parked. He just left his
car behind ours - out of 100's of cars, he chose ours. And someone was in
 front of us, in YELLOW LINES, so we couldn't get out.  Alan went in to get
them to announce it and no one came out.  We saw a cart guy and he called
customer service to make an announcement.  Finally this old geezer tottered
out saying that when he pulled there, the OTHER car in front of us, wasn't
there.  He tells us that car shouldn't be there since there aren't any
yellow lines on either side of it.

Being the true teacher,   I told him to come over and see the yellow lines.
I told him he has to  learn to park only where there are yellow lines and
under my breath I said  he should lay off the sauce. He was clueless.

 The End.

 

11-16-02

Today we celebrate my birthday, thank goodness.  Adam and a few old friends  met us at the beautiful tea room for quiet and relaxation. Shelby is very sweet. As he said.   The assortment was scrumptious and everyone raved about it.  There were 2 types of scones with 2 types of creams.  Then there were the sandwiches - smoked salmon, chicken, egg salad, and cucunumber.  Each was cut in a different shape, like hearts. The desserts were chocolate covered strawberries, a black forest mini-cream roll, a frangelica chocolate tart [the best], and a lemon thingee.  Alan bought a Barbie birthday cake. 

 

11-21-02

The dr. at Hahneman told me to get an inhaler [he thought you could get them over the counter], but when I went to CVS last week, you need an RX.  SO they called his office but he was in a meeting.  By 5:20 he hadn't called back and I called his office and they were gone for the day.  I was pretty miffed because I was afraid to go to sleep that night.  If I had the inhaler, I'd have been in a better frame of mind.  SO the next day, we finally, got the dr. and he called in the rx and thank goodness, I haven't had to use it.  Always the way.

 

But I coughed so hard, that now my back hurts.  Can't win.

 

11-23-02

For our special days this week, we are giving ourselves a special treat tomorrow.  There is a charity luncheon in Clifton N.J. [we went up there a year and a half ago] for daytime stars and also a celebrity auction.  It benefits the Make a Wish Foundation.  The room has a view over the river of NY city.  We never thought we'd be able to go. Another milestone.  The woman who plans it has been emailing me of the progress of the event and I have been salivating.

 

The woman in charge  gave so much thought to our table.  She is seating us with a producer from The View and the producer from the Matt Lauer show.  This will be one of our first normal Sundays in such a long time and are glad to have reached this point. We'll try to 'place' Alan's novel with someone who could do it some good.

 

When I had my surgery in March, Alan arranged for nurses to come in for 12 hour shifts but of course the first day got messed up and they didn't show.  So he stayed over with me in the room.  Just for those blessed pieces of chipped ice, closing the door the floor nurse left open, and a 1000 other details were invaluable.

 

One of the things that helped the most when I was sprung from the hospital, was watching re-runs of many of the funny sitcoms on TV these days.  Alan made tape after tape of shows we never caught -like Raymond, Will and Grace, etc.   It diverted a lot of the pain during those times we were watching.

 

11-24-02

 

Probably I didn't explain my breathing problem too well; it isn't that I can't breath thru my nose, like an ordinary cold.  My problem is further down due to the burnt trachea, esophagus, and pharynx.  When I take in air thru my nose or my mouth, it doesn't go down past the back of my throat at all and I am near passing out.  The tissue back there swells so much, it closes up.  The inhaler will only work so long until I get immune to it. The cold put the problem way over the edge.

 

I forgot to tell you to look on the newsstand this week at the "ABC's SOAPS IN DEPTH" magazine and there is a section with questions and answers.  Alan is in there this time.  It is a good letter and answer.

 

Wed., was our anniversary.  People wished us many, many more which I hope for, also.  36 is not enough.  Alan is just so special and the love of my life.

 

11-27-02

Finally we just heard from the IRS and they declared our Foundation a charitable institution so now we have to do the forms to get NJ state approval.  What a process.  Then we can plan our brochure, website, and a fundraiser.  Our personal trainer  [and kickboxing teacher] suggested something on the order of an aerobic class where people can attend and the fee goes to the charity; she has done these before.  I like the idea a lot.  The organization is dedicated to providing support for patients with  thymic-related carcinomas in particular, but also to patients   treated for neck cancers in general.  We hope to develop a database of physicians, pathologists, and other  medical personal with experience in thymic-related cancers.  

 

We are calling it the Foundation for Thymic Cancer Research.  One of our ultimate goals is  to find scientists that can look into a treatment like a monoclonal antibody or gene therapy. 

 

see www.thymic.org


 We started volunteering for MANNA at the synagogue in
Northfield - it is a charity here that takes 3 meals a day to sick people [the name comes from the old testament when the Jews found manna to eat in the desert].  The chapter here, cooks 2 days a month for 120 patients [AIDS, oncological, seniors, etc.].  We were in awe over the operation and how organized it is; and they have a masterful chef.  Our first time we spooned the different foods into the containers.

 

 It was an unbelievable experience.  We felt so good when we left that we are going to go every month.  We said it was a blessing when our neighbor brought us food each week when I was burnt so now we can help other sick or old people the same way.  They make a month's worth of meals for about 120.  It was so organized, assembly-line-like, and the chef is a master.  Those 120 don't get slop.  The chef made us all lunch [a delicious salad, blintzes, orzo, dessert].  And we met lovely people from our own neighborhoods.  The woman in charge lost a son to aids about 9 years ago.  At one point a volunteer putting meals in a car asked only for a bag of soup containers.  I just knew!  And I was right.  It was for an oncology patient that couldn't swallow.

 

New story. The neighbor is a piece o'work.  She is going around and telling people she has breast cancer now. I think she is a pathological liar.  It is all so despicable.  Last week it was her son needed an operation but he was outside screaming and jumping each day?????? She has been following around one neighbor with breast cancer and copying all her 'moves' [same dr., etc.]. 

 

At the charity auction, we set a limit that we don't go above.   Like they were auctioning off 2 tickets to see a taping of Saturday Night Live AND THEN GO TO THE CAST PARTY AFTERWARDS.  We saw that as our 1st choice but it got too dear to keep on bidding.  Any of the auction items would have been wonderful.  They also had 4 tickets to Beauty and The Beast with a TOUR backstage included. That was pretty high also.  How this woman [Irene] gets these items is a miracle.

 It was on the job training for us.  How to organize a tax free fundraiser...we can only hope to do a fraction of what she did.  Irene is as sweet as can be and she told us she would help.  Some of the stars told us that day that they would come to ours and all we have to do is get in touch with them thru Irene.

 

You can see in the photos who we  talked to   -   Kristen and Eddie Alderson [the 2 little children, my favorites - she plays Starr Manning and he plays Matthew]. They live in Bryn Athen , less than a mile from our old house from hell.  Alan also took my picture with Vincent Irizarry [Dr. David Hayward], Ilene Kristin [she plays Roxy on One Life to Live and formally Delia on Ryan's Hope], Thom Christopher [the old Carlo Hesser on One Life to Live and formally in Buck Rogers, Alan said], and Kim Zimmer [she has won best actress many times on the daytime Emmys].  It makes TV come alive. 

 

http://www.belayne.com/MakeWish/album1.html

 

11-29-02

Since this malignancy is so rare, they have to watch every symptom carefully. any problem I develop now, they consider to be serious since I am so debilitated from the radiation.  In fact, they told me that for the first year after radiation, just about any syndrome has to be looked into.Like my hair falling out is a sign of the thyroid not working. 

 

But they said, as all the other drs. have told me, that the scar tissue from my surgery can actually get worse. The radiation does that when it is  done in addition to a surgery.   If the radiation is strong enough to kill cancer cells, then it is strong enough to fry your good layers of tissue too.  What I have to learn is what feels 'normal' for me now and what is not a good sign.  It is all so new right now.
 

One evening my sister took a casino bus from Phila. to the shore [a group of teachers from her school do this twice a year]. I haven't seen her in months. They came into the Showboat so we met her up there for dinner with her friends.    Then we saw the I Love Lucy Exhibit which was clever.Had you seen it. Totally free.

 

They had a few visitor participation games, like the conveyor belt in the candy factory - do you remember that episode.  Nancy 's friends went up and had to pull the candy [plastique] off before it went past.  There was another team [2 men] and a counter showed who did better.  They lost. It was fun.  They had the grape smashing episode too and a counter that said how many stomps you could do.  All free which is the best.

12-2-02

Adam wrote a poetry book [did we tell you] and Alan is going to get it published for him for his holiday present.  We gave,  Adam a copy of the ISBN number [like a UPC code ---it is always on books these days] in an envelop.  We reserved it for him and a Library of Congress number, which you  need to publish a book. 

 

For the study of cancer incidence, I made my first round of calls to HHS [hard to find the number] and now have my next set of numbers to call., as I predicted would happen. Next week maybe I can get more answers when people are back from the holiday.  The only affirmation someone told me about any kind of high incidence was that they thought a study was done in the Toms River area because the residents there had a high rate of cancer.  I will try to narrow that down.

 

Probably my mental outlook won't be affected by  doing the cancer survey.  If I see that it does, I'll stop.  I probably would chastise myself worse if I didn't do anything.  Someone has to - it is ridiculous around here. 

 

we bumped into a Longport neighbor from 35th avenue there.  Got me some more statistics.  He had non-Hodgkin's lymphoma 10 years ago AND his next door neighbor had the same [the neighbor died!].  This town is a hotbed.

 

I suddenly developed a backache yesterday and today realized it is the same type I had when I was on the statins.  It was so bad, I couldn't stand up straight.  SO today I didn't take the zetia and by tonight the ache was decreasing.  Now tomorrow, I will try the pill again and if the ache comes back......well, you guessed it.  I have a sensitivity to the damn pill.
            

No blood tests results yet.  Alan called this time [I make all the initial calls but when I hit roadblocks, I hate to say this, then I think sometimes a man's voice does more good].  The nurse said she'd fax them.  Nothing came over.  stay tuned...

 

  Germs abound, as if we didn't know.  We stopped for breakfast today after my therapy session and I could see the waitress counting her tips from a little wicker basket.  Then she proceeded to go to where the chef put up the meals for her to take to the tables.  First she buttered the toast on each plate, keeping one hand flat on the other piece of toast [I was livid].  Then with her hands dirty from touching dozens of bills, she held the  one piece of the toast and buttered with the other hand.    This is how epidemics start, like the cruise ships.

 

12-4-02

We are still amazed at the luncheon we went to and how organized and successful it was.  Last year the NJ chapter of Make A Wish granted over 300 wishes to sick children. It made me feel so sad to think kids get what we get and suffer like this; they shouldn't - they should enjoy their childhood.  I felt like I was a kid getting my wish granted just being there and enjoying the lunch [being able to swallow it and talk again] and then when we won the auction, that was the icing on the cake.

 

 Before we left I said to Alan maybe we shouldn't bid on anything since NY is so far for us to go to.  So famous last words!  They were auctioning off a 3 hour cruise in NY harbor on Forbes' yacht.  It sounded so neat - dinner and all, the photos of the yacht were just so posh.  So we bid and we got and we go in May or June, when it is mutually agreeable with the captain.  It just seemed so different and an experience we'd never probably have the chance to do again. 

 

People are being incredible in volunteering to help.  We were talking to our new neighbors today and telling them about all of the above and her cousin drove up.  He said he'd help too.  BOBBY RYDELL!  He'd do anything to help a cancer benefit because his wife has cancer.  She was with him and is very brave.  Maybe we'll auction off dinner with him or something like that.  It is all in its infancy right now.  My mind races and my body can't keep up.

 

  Last Tuesday was a day of drs.  -  way too funny, as it seems, all Kaufmans.  Alan started out with Barry Kaufman [who I may use too] for a pre-colonoscopy appointment.  It all depends - we asked for Alan's blood test results and the staff is making a song and dance over it.  We are so not happy with this since we are on the verge of not even getting this test there.  Can we get Rich privileges down here for a day?

 

Then I went to a James Kaufman, an endocrinologist.  He wants me on a new cholesterol rx [zetia], since it is 456.  He wants me also to get my vocal cords looked at with a fiberoptic camera to see why the hoarseness has returned [remember last summer with the tube down my nose].   It is frightening because I don't want them to see anything new. 

 

 And he wants to wean me off estrogen. Lots of tall orders..  And he wants to monitor my thyroid [he was kind enough to tell me how strong radiation is and it can cause cancer of the thyroid and a lot of other merde].  He didn't exactly put a smile on my face  but was very honest.  He said the radiation oncologists never tell the patients the entire truth about what could happen.  He said he gets the patients after the treatments [like me] and the radiation can work in your body for years.  First it was 4-8 weeks till I felt improvement, then 'they' said a few months, then a year, and now we have years of the unexpected to watch for.  He said my area can result in thyroid cancer. So I have to be watched carefully and often. He said the esophagitis can re-occur so to watch for that. 


As far as the weaning away from the estrogen,   I am in a catch 22.  The majority of my drs. want me to stay on it because it is protecting my heart. So here we are damned if we do and damned if we don't.  What the hell do I do.  Many women in my situation get off the essy-estrogen and promptly have a heart attack.

 

But we finally got Alan's blood tests back today and 2 were abnormal ---the sgot and sgpt were very abnormally high and we are nervous. He never has abnormal results. But we are trying to stay calm.  They are both liver study tests and the Merck manual and internet do not give us good vibes.  There are only a few things it could be.  He made an appointment at the primary on Monday.  And wouldn't you know it, but the g.i. guy who ordered the tests never called to say a word about it.  Very lax. We will request a call back from him tomorrow.

 

 We requested a call back from him and his nurse called and said the results were  circled??????  They WERE going to tell us when Alan went for his colonoscopy in 2 weeks.  I am not at all happy with these guys.  But it is too far to use our friend Rich,  unfortunately.  We wish we could use Rich - he is a much much better dr. - but you really can't have this test and drive so long to get there [the prep makes you uncomfortable]  and then again to go home feeling so punky.

 

We learned a little more local health information today.  About 8 years ago, a lady in Longport tried to do a study like I am starting.  She was discouraged by the town officials [---seems that if word got out that there is a high incidence of cancer, then people won't want to live here and then the property values will go down].

 

12-5-02

 Alan got lyme disease around 1994 and we looked at all his old blood tests and these same 2 tests were normal, even up to a year ago, when he had the last one.  We will see if the medicine he is on for his lyme symptoms affect the liver.   He has no symptoms except a few months ago, he had some pain on his left side [he has had that since tae kwon do days, where he was kicked].  The dr. had him scanned and nothing showed up at all.  He thought maybe it would be a hairline fracture of the ribs but nothing came up.

 

The ONLY thing that matters is health.  Without that there can be nothing else.  Because if you don't feel good, then you can't do a thing, as I found out.  But health includes mental and physical.

 

Adam is pretty excited about his book.  For his cover, he had
a choice of photographing his own tree [the title is Perfect Crooked thing]
or choosing one from clip art that Alan sent over and Alan put in a scan of
a water color that I painted.  You know that Adam picked my water color; I
couldn't be more honored by anything else. His book will be on Amazon and
Barnes and noble too.

 

12-6-02

If the neighbor had shown any compassion for me at all during my ordeal, I'd surely do your suggestion.  In fact now that I am 'coming out of it' somewhat, a little at a time, I do send flowers or bake bread or take cakes to the people that showed support over the last year. With her across the street, she is playing nasty games now, even tonight she allowed the dog to bark over an hour, she was out there, and did nothing.   Having her upset us both like this, and causing us to spend a fortune for a lawyer, is something which doesn't allow me to be as forgiving  as others might be.  I have to save my compassion and sympathy for those who really deserve it. And there is a long list to tend to.  Actually she is the one who should be sending me flowers and thanking us for allowing community mediation and not taking her to court with the judge. 

 

12-7-02

 Physically I am better than the summer; except for the neck pain and discomfort, the sore areas in my esophagus and trachea, and the voice problem [the hair loss is the least important at this point; the only thing we care about is malignancies anymore - the rest is chicken merde]. 

 

In other situations, we have been reporting a $30.00 phone call appearing on our phone bill. Did I tell you about that.   Alan was deleting an obscene spam mail and it connected our phone to the phone company.  Now the bill shows we were connected to Gui Bissau [wherever the hell that is] for 3 minutes for 21.54 dollars plus tax.  The number called is 0245290101.  So we wrote to the fcc and the governor's office and each day we will send a few more emails out.  If enough people report these scams then maybe something can be done about those criminals.

 

Well we made a decision today; Alan will not go to that Dr. Kaufman for his colonoscopy.  Too many negatives at this point.  We will start over with another recommended dr.  We just despise the fact that he didn't tell us about the abnormal numbers and he was too content to wait several weeks.  I think that is horrible medicine.  You really have to WATCH OUT FOR YOURSELF in the medical community. 

 

Alan isn't on anything new but he did have that bad cold for 2-3 weeks, along with me.  He was on a lot of stuff for the symptoms.   Let's pray it is something like that.

 

And we made another decision.  I had made an appointment with a dr. about 10 minutes from here to have my vocal cords looked at with a fiberoptic camera to see why the hoarseness has returned and all he had was Jan.22 which I think is too long to wait when they are monitoring me for any recurrences.   It is  frightening enough because I don't want them to see anything new.  

 

  SO Dr. Kelley [the surgeon] recommended someone to see in Vineland [he is a clinical professor at Temple but just so happens to have an office there]  And he can see me Wednesday!  Big difference.  Shopping around applies to medicine too.

 

  12-9-02

Alan went to the dr. today and they felt and listened to his abdomen and said that it seemed fine [no enlarged liver, etc.].  The next step is a whole battery of blood tests - liver panel, hepatitis A B & C, and re-do the enzymes he had.  They said it may have been the cold he had since he took acetaminophen.  So we have to trust them till the blood tests come back.  They said there wasn't any call yet to do imaging studies. They do want him to see a g.i. guy so we will make those appointments tomorrow, with a different dr.

 

 We have all learned just to take one minute at a time.  That's all you can do sometimes.

 

We spent $100 for a special shampoo with - get this [hate the word] - thymus extract and a conditioner.  From Penn Herb Co. in center city.  Both Alan and I are using them. The dermatologist said not to waste our money; I don't see any difference.  The synthroid may be stopping the Grande exit of hairs but it is very thin. And fine.  The mop is thin.  Didn't know that would be your side affect too. STOP FOLLOWING ME!

 

12-10-02

We usually use Howard Gross but Alan is not happy with his glasses from his optical.  He had a pair made about 7 months ago and everytime he puts them on he gets severely dizzy and doesn't feel good. So he wears his previous pair which for some odd reason are getting scratched - like no other pair of glasses he ever had.

 

So he is going to Uretsky in Linwood.  They also were very nice and said they'd see him Thursday which is pretty quickly.   Another good sign.  All these decisions with drs. appointments.  Well as long as we have freedom of choice and there are enough drs. to keep choosing from. 

 

We got our appointments with Ljubich so that is fine [Jan. 10th] and I was impressed because they can see both of us the same afternoon [which the other guy wouldn't do].  So we are off to a better start.

 

The other dr's. hand was on the door itching to get on to the next room; we never asked all our questions so that was the final straw.

 

12-11-02

So now I am recovering from the tube being inserted up my nose and down my throat. They sprayed first but it is still something you feel. Since then I have had no appetite at all today. I looked like a porcupine, Alan said.  It is so much pressure and then it hits that sensitive spot in the back of your throat.  

When he removed the tube, I thought he was done but then he did the other nostril.  Poor Alan's hand - I must have squeezed him so hard.  You can't eat for a while afterwards because of the anesthetic - if you swallow wrong and gag, they say you could get pneumonia or worse because you won't feel it.

 

He said my vocal cords look like they are moving properly but on the left side there is extreme edema [swelling].  Like I could have told them that without the torture.  That is the horrible pressure I constantly feel.  ].  Something on the other side of where he scoped is pressing in.   The radiation oncologists will tell me this is scar tissue pressing in - let's hope.    He prescribed some medications to reduce swelling and acid in my stomach since the scans show I have a hiatal hernia.    Alan can not believe I have another medication.  We have a typed list we take to each new dr.  It is one page long.

But I stored up the other night.  Never thought I'd eat normally again.  There was a Manna fundraiser. It was awesome.  Such food as you wouldn't believe.  Every restaurant donated their offering and the restaurants were the best of the best from Cape May up to Atlantic City . The list included Savaradio, Tuckahoe Inn, Touch of Italy, Smithville Inn, Inn at Sugar Hill, Ozzies, Mad Batter, Steve and Cookies, and about 15 others.  For dessert, you would not have fathomed what they had.  One restaurant made crepes and served them with ice cream, fudge, strawberries, whipped cream, bananas ---you name it.  And it is tax deductible. We met a lot of super nice people too.

 

12-12-02

My friend kept emailing me encouragement everyday last summer, with the old Chinese phrase 'a journey of a 1000 miles begins with the first step. Hope you start to feel better soon.  So sorry to hear you are under the weather.  You should try to stay home and let your body repair the damage.  If you force yourself up and out, maybe that is why you are worse each day.  Whether it is big damage [like a radiation bolt] or viral attacks, you have to let the cells repair.  The stress of forcing yourself up is bad on the immune system.

 

I am learning this the hard way, too.  When I couldn't eat and my nutrition was poor, it took a toll on me but it didn't show till now.  It catches up to you - now my hair is falling out.  For starters, it is a direct result of not enough of the right building blocks. Who would have thought.

 

12-14-02

 

There has been too many instances of illnesses lately, stemming from molds.  It is frightening how severe they can be.

 

Because of all my normal allergies [like cats, dogs, cigarette smoke and 88 weeds, etc. ], now with my permanently burnt esophagus and trachea, they are worse.  My airway is much smaller now due to the scar tissue causing edema.  We had a bad experience the other night when we were in Steve and Cookie's restaurant [in a NO SMOKING room] and people lit up and I had a difficult time breathing. What complicates my situation is they took out one of my jugulars so when I lay down, everything has been redirected, edema occurs, and presses on the trachea.  Nights where I have been exposed to something like smoke, I wake up wheezing.

 

When we walked into Steve and Cookie's  and the bar was near the door; the cigarette smoke nearly asphyxiated me.  My throat is so narrow now and sore anyway, that I couldn't tolerate it on a good day.  So we walked upstairs and I was optimistic about dinner since I made reservations some time ago and REQUESTED THE NON-SMOKING ROOM.  The waiter was going to seat us at a table in front of a wall with a big cut-out [the size of a window].

We were so disappointed.  Of course the bar was on the other side.   Smoke was pouring into the non-smoking room. What a sham! And  this is called a no-smoking room.  We made a fuss and said we were ready to leave but they put us at a table at the other end.  At first they refused since another group was scheduled for THAT table of 4 at
6:30 .  We had to suggest that they give them our original table [in front of the smoking hole in the wall].

We  all agreed that the food was exquisite and the service was flawless but the smoke kept infiltrating our air space all throughout dinner and  it ruined it.  As it turned out, the seats we chose were no better ---we were amid toxic air the entire time.  The way the salads, entrees, and desserts are prepared are beautiful. Our waitress was perfect.  But we won't go back unless drastic changes are made.  We only stayed because we had a gift certificate.  For the amount of money that meal cost [$90.00], we should have been able to breathe smoke-free air while we ate.

Near the end of dinner, people went over and lit up at the small counter - bar next to us.  Not one staff member had the courage to tell them they were in a non-smoking dining area.  Now I had to hold a napkin in front of my nose.  Isn't that a bit ridiculous that a patron has to do this to be able to sit in a non-smoking section..  We all were livid and had to cut short our dinner, pay and leave; we complained but the manager said they really can't do anything about it - EVEN THOUGH IT WAS A NO-SMOKING ROOM.

So therefore, Steve and Cookies does NOT have a no smoking room and to advertise such is fraudulent.  I have a mind to write to the restaurant critics and inform them of this discrepancy.  Many people have cardiovascular and respiratory disorders and this is a handicap and they need a smoke-free environment.  It is medically necessary and for them not to provide it is against the
ADA act.

 All I know is we came out the losers last night.

 

12-16-02

Maybe we actually will be able to pull off a similar affair.  People are being incredible in volunteering to help.

 

DOUBLE GOOD NEWS!  Alan's 2nd set of liver tests were NORMAL . WHEW!!!!!! We are so relieved.  He still has to run all this by the G.I. guys [we will get 2 opinions].  He will probably have to be careful in the future with taking Tylenol [the Lyme Disease may have cause this problem.

 

Here is a coinkydink [a nice one].  The other day when I woke up, I uncharacteristically remembered part of a dream I had.  I had been in a car dealership, purchasing a car - you know, the haggling and the details.  Alan freaked out because he said he dreamed that I went to a car dealership in his dream.

 

12-19-02

Today I finally made some progress with my cancer incidence project.  I told
you about it, didn't I - the incidence here in Longport seems very high.
After months of getting an electronic tour of the health department, I
FINALLY reached the correct person [in Trenton ].  She told me how to go
about taking a survey here in town and that they would welcome our results.
And she put my mind at ease - we don't have to do the whole town.  We can
pick as many streets as we want, as a representative sample.  So tonight we
started making calls to try to enlist some neighbors to each do their
street.   Alan made up a survey form.

 

Well here we are in the middle of my cancer incidence survey and we heard today that Betsy, a lovely young lady [in her 40's maybe] that lives here in Longport died of breast cancer today.  Just awful - Gina knew her from fundraising efforts for breast cancer.

 

Double isch.  I spoke to a lady who lives on Oberon in the summer and she did a study of her 2 blocks and every house had an incidence of cancer.  Is this just awful

 

Alan came in last night from his planning / zoning board meeting and he was
carrying the largest jug of chocolate covered pretzels.  He said Santa Claus
came into the meeting, walked up to the stage and gave each board member a
wrapped present.  Mmmmm.  My favorite.

Tonight  we went to the Catholic church on Jerome, where our friend Patty's 8 year old gave his first piano recital [he goes to school there].    I didn't know till we arrived that the children were all
singing or playing on the piano.  


We were thrilled to be there; it was so old-fashioned.  We didn't teach kids
like that - because the parents didn't care or motivate.  But some of the
kids looked so scared and you could hear it in their voices or see it in
their faces.  I couldn't do it.  They are very brave little souls.  Or are
too young to know better.  So it was so special to see the whole
scene...photos, so many guests, kids all dressed up, etc.  And the church
looked lovely with the SIX trees and white poinsettias.  SO classy.  Oh,
Patty brought her 98 year old neighbor to hear it.

12-20-02

I told you that dog lady SAID she has breast cancer.  We all highly doubt it, from what we've observed [if I am wrong, then so be it, but I just am having one of my intuition 'moments'].  There was just a story on the news that said a woman faked cancer for her daughter to collect money.  There isn't much lower. Did you see it. She shaved the 7 year old's head and gave her drugs so she'd act ill.  We won't put anything past chien femme.

 

We did get Alan's money [most of it - I am working on the rest] back.  The glasses were made with a prism in it, we found out; that is only for people with double vision.  NOT HIM!  We told the optometrist we went for a 2nd opinion and do not want the glasses remade.  He took one look at HIS error and gave us a credit immediately.  He rightfully should have been worried.

 

We got our brochures  finally for our Foundation and the photo on the front came out so nice, that Alan put it on the website [take a look - www.thymic.org  he did it all on the computer].  I will send you our literature if you send your address.  We are trying to get a celebrity auction in place for a year, year and a half from now.  We got a call from Paul Moriarity [he does Phila.'s channel 3's 'can you believe it'] and he said he'd help with our fundraiser ---maybe auction off a spot on his segment with him or similar.  We once did a show with him and have remained friends ever since.   He is a doll but unfortunately his father is battling cancer.

Did you ever see Grover Silcox on Fox's news.  He usually does a funny segment.  He is also a friend and we will enlist him as an auction item too. Maybe he'll give the winner a spot in one of his segments.  His uncle was principal of
Lincoln and my sister and Grover were classmates.  He is also a great guy. We have so much to do for preliminary work, though, first.  First assignment - - - we have to think of a place [maybe one of the casino ballrooms] and try to get the CEO to donate something off the total cost of the meal.

 

12-21-02

It doesn't help me to have a spare moment these days because I'd think too much. So we are over-delving in projects.  I started this scene of Paris in oil , but it is looking out over the city from high up at the Galleries Lafayette - they have a roof top observatory.  In the distant fog is the Eiffel Tower .  I did the 1st layer and was not pleased.  Then when I put on the 2nd layer of oil, we both loved it. But it is far from done but I am afraid to touch it; I'd hate to ruin what I have.  It looks so cool.  HELP!

 

This morning we met our fellow committee members at Resorts and each person brought papers to hand out; I love when people act like adults.  A lot of people are outraged.  There are too many dogs off leashes [which is illegal], they are on the beach and boardwalk off leashes jumping at kids and people [also illegal], and the waste is not being scooped up by the owners [also illegal]. 

 

 No one said to bring handouts but they did.      We decided on a name and one more meeting [before then, we have assignments to do ---you never get out of school].   Then we will plan an agenda and invite 3 towns to the meeting.  We have tons to do.  We want to get the insurance companies behind us.  Because we are all paying .

 

From there we had to go to our pal Patty's house in Ventnor; she ordered a dozen of Alan's books to give out for mass presents and wanted each signed.    Her one sister teaches college calculus and the other night was giving  a final; while the students were writing, she read Type Oh, Alan's 3rd novel.  Patty said that her sister was actually laughing out loud at parts of the book so much that the class asked her to read something else because they couldn't concentrate I am beginning to love this  holiday.

 

But I do remember quite well your description of the days at your school.  The sad thing is NOTHING has changed since I left.  It should get better, over time, like wine, but not in Phila.  It sucks the life out of everything.

 

12-22-02

We have so many thanks to send to you all.  Mainly for being there this year for us.  You are the most compassionate people.  Since this is the season of miracles,  we can say your sister and I are the miracle the health care professionals made this year - we are here.  I hope we get closer each day, to the time little children will ask, "what was cancer?' 

 

Your letter was not morbid - it is just life.  You are very compassionate and I feel bad for all the problems you have and have had to go thru.

The letters that bother me are from people that say stupid things like, "Are you satisfied with your drs. DOWN THERE?"  Kind of insinuating that we haven't done our homework.  Or someone who emails me from FL. and says negative comments each time about our weather, "I know the weather is gloomy up there but I hope you are feeling ok."  We are NOT FL. people and we love all weather anymore. Just to wake up and be here is enough.  The weather is insignificant at this point.  But he insists on starting each letter that way ["I saw on the internet that it is turning cold; here it is beach weather].  Like we are supposed to be jealous?  We would not want to go to the beach 12 months a year. Our other friends in FL. are so burnt out by the beach that they don't go at all, in either home. It is nothing special anymore for them. 

 

12-24-02

What a tremendous surprise you gave us yesterday.   Alan and I were very touched and to say it is so nice is an understatement.   We are starting to get emails from people around the world that have been routed to the website and some of them have such sad stories... we have a lot of work ahead of us.

 

 We went to Patty's house tonight.  It is a heart-warming experience to be part of her family's celebration.  Patty has a twin Pam [ a nutritionist], 3 other sisters [Joan, Judy, and Suzy], and a brother.  They come with their spouses and each has at least 2 children [ALL WELL BEHAVED].  Almost everyone wears red and the little girls have on velvet and ruby red glittery shoes. Before we got there, half of them opened their multitudes of presents but you couldn't tell - the house is just wall to wall gifts.

 

As you walk up the front steps, you see, hear, and smell the ocean since they are one house from the beach. Baltimore .

 

The decorations are classy ---there are 40 boxes of them that have to come up from the basement each year.  'Santa'  comes in and gives each child a gift and the fellow who plays him has the best sense of humor.  He sits there making jokes and says, "Santa cracks himself up."  It is such a happy time [and there is no music playing].  The food is incredible, since Patty's mother, Pat, makes it all.  She made a huge filet and sliced it for sandwiches, a ham, the best mashed potatoes, salads, chicken hoagies, hors d'oerves, and the desserts are endless. 

 

We took Patty and her children's gifts in this huge 4 foot stocking we found.  She gave us what appeared to be a gourmet food basket [wrapped in blue and white - they are very thoughtful].  Which it was and by itself,it has incredible items in it.  But what rendered us speechless, like you did yesterday, is in the card she made out a TOO TOO generous check to the Foundation. 

 

We don't know what to say.  This has been a great Christmas for someone who doesn't usually groove on  holidays.  I am here.

 

12-26-02

So having lived here your entire life, did you ever visit the beaches by the Delaware Bay in the Cape May area.  We had to go down towards Cape May for a party [way small compared to yours] but we left home earlier and then headed over to the Delaware Bay side of the island, to drive along the coast.  We did it once before [it doesn't add to much time to the trip] and the bay was so churned up with powerful waves.

 

We went across the Longport bridge, we knew the Christmas day's storm was a big one.  It was full tide and the marsh was covered with water [I took photos with a disposable camera - because no one will believe it was so rough].  Usually you see reeds poking up all over but the road was the only thing not under water. 

 

When we got to the DE. Bay, we couldn't believe AGAIN, how wild  the water was - foam was blowing across the road, spray from crashing waves was 8-10 feet in the area, and many roads were covered with water.   It will always be one of our favorite treks and it was both an awesome and relaxing ride.   

 

Yes, the drive in the storm was very inspiring. It may be corny but after all that happened this year, I kept thinking how wonderful it is that I am here to witness the beauty of it. It wasn't raining - maybe a mist.  But the bay was so churned up and awesome to see.  We felt snug in our car [we took the new one] and were very careful.  The one place where the bay was spilling into the street, we sat and ate cheese and crackers [from our new gift basket].  But Alan parked on dry land and we took off when more water was running down the street in waves.  To me, that is the best entertainment.  Thank goodness Alan likes the same things.  Very simple pleasures.

 

Today we went up for our semi-annual check to the dentist today [in Jenkintown]. We got good reports -whew!   We had no snow here but as we got closer and closer to Phila. on the Atlantic City Expressway, we saw more and more coverage.  By the time we got to Elkin's Park, the sidewalks were still covered with slush.  We were more than happy to get home right away so we didn't visit a soul or stop to shop anywhere.

 

Like you, this year the holidays were so special and touching [like your gift]. I could say this is the best Christmas we ever had.  I am here!   We killed lots of 'al quaeda' cells in my body this year and I now can eat and talk. 

 

12-27-02

our friend Dolores [remember she was engaged 35 years to Arthur] called us from FL. Yesterday on a speaker phone.  She was in their lawyers office, making new wills.  The lawyer wanted the spelling of our Foundation's name because Dolores and Arthur are leaving a bequest to it in their will. 

 

12-28-02

 

You can always expect there to be something happening here; for days my back has hurt.  I thought it was the usual reasons [tried another cholesterol medication, Zetia, and thought it was that].  But this morning I had a covering of red soars all over my mid-section, especially the back.  We called our 2 drs. -the primary and dermatologist - while looking on the internet and I have Shingles.  We were very impressed that they returned our call immediately.  The one was funny because as I was describing it, I said we were looking at the internet and it looked exactly like that.  He said, "See you don't even need me anymore."

 

What do you think - did I catch this herpes from a computer virus

 

He said to stay away from kids from now on.  Like with all the precautions we've taken...but what we use only kills bacteria.  Everything I catch is a virus.   Because, they say, I am immunosuppressed and the virus took over so I am on tons of medicine.  Steroids [again - remember last summer with the burns ] and an anti-viral. 

 

 But now my nerves are starting to frazzle.  Monday is the scary freakin' -out PET scan [long story - it was moved up due to insurance changes as of the new year; we spent days on the phone trying to get it pre-certified. ]  When a test, like this, costs $6000.00, the insurance company needs to talk to the dr. and give you an approval number first and everything is changing the 1st of the year they say.

 

 I spoke to a Helen at Jeanes but then AMI called and they managed to complete all the pre-cert forms and get a number.  SO the bad thing is Monday I am scheduled for the PET scan where I lay on my back an hour and that is where the pain and sores mostly are.  The medications are not symptom-free either.  I hate reading about that on the included literature.

 

They told us this could take weeks to go away and I am very uncomfortable sitting.  Standing is better; I am fed up.   We have a dr.s' appointment up there in town, the 23rd, and I am even wondering about that.  Maybe we could meet for lunch that day.  We have a morning appointment.  I didn't do well before this and this puts me over the edge of my comfort level.

 

I knew that the virus hangs around the body and just waits for an opportunity to manifest itself.  The radiation really did a number on me, that's for sure, but I hope it did its number on the al quaeda too.  Alan, like your Uncle had zostrix too, when he had shingles about  15 years ago. 

 

 Today the sores actually looked worse.  I am diligently taking all the medicines.  Tomorrow morning I will down some Tylenol with benedryl with the hopes it will help the pain and sedate me somewhat for laying an hour on my back, where the sores are.  That is going to be a big problem; it is generally difficult laying on it anyway for that long because I have some disk problems.  I always get up with a back ache after the hour. 

 

Like with all the precautions we've taken...I still get something.  We use alcohol on everything, even the shopping handle cart.  But what we use only kills bacteria.  Everything I catch is a virus.   I think we'd need to bleach everything  which is hard to do.

 

Did you find any Reiki  to help me thru this.  I need an arsenal this time. 

 

I did the entire prep last week for  the PET scan and got there early, when they said.  Alan and I sat and sat some more.  I asked to speak to the dr.. because I had many concerns about all the medications I am on, laying on the sores from the shingles, plus the radioactive injection.  He was very nice and said they could put cushioning under my back. But then, finally the technician came out and told us the PET scanner wasn't working right.  A rod that clarifies your pictures wouldn't go into the instrument.  They had a call in for help but my injection was losing potency by the hour so it wouldn't make the scan as accurate so it had to be re-ordered for the day after, if we could get it re-certified.  What an aggravating morning.

 

I had taken benedryl [so I'd be in twilight for the hour] and was falling off my feet and hadn't eaten plus my back hurt and the sores  were very painful as my shirt touched them when I moved.  But Alan is a blessing.  He got me some breakfast, got us home, and then called to get it arranged.   I called to be sure the Scanner was working.  You just can't imagine how the anxiety is - I thought it would be over by then.