July 5 to August 6, 2003

7-5-03

We went to the fitness center this morning and the class I was going to go to had changed and it was 'step.'  I did not like it [I never really liked step], but the problem was to keep up, I had to go faster than I could breath.  SO after 15 minutes I left.  I was disappointed that I was not up to it - funny how kickboxing is easier.

I never told you the story of my next door neighbor.  From Pittsburgh ---they came down last week.  Their phone and cable was not working; they wanted to use our phone.  At first, we were ok with it [though it got to be very inconvenient].  Every time I was resting, they ring the bell and the 2 of them would fight over which call to make and how to do it, etc.

Then - YOU WILL NOT BELIEVE THE GALL - and we did not figure it out till 2 days later.  We were getting tons of calls, waking me up, disturbing our meals... they had ALL their calls forwarded to our number.  They didn't ask us; they didn't tell us; we have no idea how someone can do that with the phone company WITHOUT our permission.  People would call 2 - 3 times in a row and hang up; some spoke no English. What a mess.

7-6-03

This week, I have been too hoarse to talk much; it is so frustrating. Except for all the neck-related problems that surfaced a week ago, I was feeling much better, physically. My voice has been horrible.  I keep thinking it should be getting better but then the last few days it hurts to talk and it feels like someone has their hands very tightly around my neck. And I am a little worried since food is not going down smoothly all the time.  It sticks in my esophagus.  We went to the dr. today and he'd like me to have the CAT scans now plus an endoscope and fiber optic scoping of my vocal cords...again. So the drs. say to get the CAT scan sooner; strikes fear in every fiber. It is very nerve-wracking and I can see how worried Alan is.  I had to start the valium again.  It could be scar tissue from all of last  year's radiation and surgery.  Of course that is what we pray for.

 I can even sneeze without crying now. For 6 weeks I tried not to sneeze.  My energy is good; I went back to the fitness center and can do a half hour of aerobics or kickboxing. And I can lift the weights at the instruments like I did before the lung surgery.  My problems are all mental ---dealing with the enormity of what 'they' say.

So I hope to do some of the Aerobo-Thon [definitely not 2 hours worth].  We have signed up about 70 people [there is only room for 30 but not everyone will be doing each segment].

We tried to go out for a short ride the other day; we were picked up by friends who live here full time in Longport.  They wanted to get us out for a while for lunch so we drove to this local legend, a country bbq.  These bbq's are neat and from another era.  There were 3 but  we found out only one is left.  The bbq is run by a black family - it is called Dewey's and summer people do not know about it. A secret place to escape to. They make ribs, and chicken and collard greens and sweet potato pie. They make a wood fire and have benches set up - all outdoors on a field.  It has been this way for decades - only on the weekend.  I got brisket sandwich and corn on the cob.  I didn't think it would have all that bbq sauce on it but it did so it wasn't what I expected. It was edible. Maybe it burnt my esophagus and that is the root of my new problem, we are hoping.  I have to be extraordinarily careful now.

Today were 2 WILD and CRAZY coinkydings.  The first - I was cutting up peppers and said to remember to tell Alan to call the Current, our local paper, so they'd send a reporter to the Aerobo-Thon on Saturday.  I said to myself that the reporter, Pete Baker, loves stuff like that.  So I kept cutting the peppers and the phone rang.

We have caller I.d. now and my hands were wet so I looked at the name and it said, "THE CURRENT."  I freaked out!  Alan picked up the phone and it was Pete Baker, calling to interview him about the Foundation.  It has to be a good omen. Right?

The next one - we took a short bike ride because I wanted to put circulars in some people's doors about Saturday.  I had one left, for this lady Essie Blum.  We rode by the bay for a while looking at the sunset and then headed back towards her street.  So what do we see - she is right besides us on the sidewalk, walking her grandson in a baby carriage and a dog. And I handed it to her.

The other good news is ShopRite is donating the bagels for Saturday - like 4-5 dozen.  We were so impressed.

Today I wrote to a former astronaut.  He is a member of that cholesterol myth group I belong to.  He asked a technical question and I had an answer.  But after I get a dialog going between us I will see if he has any connections to the NIH or NCI.  He is a flight surgeon so who knows.  Maybe that is the 3rd coinkydink.

7-8-03

As for the nutrition expert - I am open to anything. At this point.  Are you doing any special dietary things.  The problem is I have already devoted 3 decades of my life to a low fat low cholesterol diet and a lot of good it did me.  People say 'well you didn't have a heart attack and die like your father;."  But to me that would have been preferable to this.  I have said that for 35 years.

So I refuse to stay on the diet now.   Vitamins are even controversial, I here.  Drs., some, say if they feed normal cells, they can give building blocks to cancer cells.  mmmm?

 If I want waffles and ice cream, I will get it.  Or a whopper. Or butter on my croissant.    If I knew that 100%, a diet of certain foods would cure this, then I would do it.  I have read 3 entire large books on diet and have incorporated as much as I can tolerate.  But I don't see going macrobiotic for me.  After all, Gilda Radner hired a live-in macrobiotic chef who made her all the perfect foods and she died anyway.  I don't want to deny myself foods anymore because I don't even know if it would help.  I do not like fish, most fruits or vegetables,  and I love carbs and desserts.

7-9-03

You had mentioned the HRT.  I have been getting heat episodes from the neck up [it is now  18 years in duration].  Though we have been trying to track down the cause, it has been in vain.  The
primary dr. in Phila. [no longer go to him] thought I was a crazy menopausal woman when I first told him.  But can someone really have hot flashes for 18 years?  This has always been my major health problem and it is still more bothersome than high cholesterol [which you don't feel] which is the major health problem drs. want to treat.   They have no clue as to what is the other problem. 

My gyn says they don't seem to be  true hot flashes.  I know women who get them and they
have a few a day or a few a week.  These episodes are cyclic - they can be  every 15 minutes.  My head gets so warm and then it dissipates.

I have been to neurologists, therapists,  and endocrinologists; seen acupuncturists and massage therapists.  I had all kinds of tests [eeg's, 24 hour eeg, tests for the rare pheocychroma - isn't that a laugh and a half].  The gynecologist put me on estrogen and that reduces the intensity of these vasomotor disturbances and lessens the frequency to one per hour.  It doesn't seem like much, but it is a help at night so I can sleep.

I just had my cardiology visit.   He was pleased how I could do so well on the stress test,  minus lots o' lung.  He said I have the heart of a 40 year old.  We were pleasantly surprised because it is the only good news we have had in a year and a half.  But then again, if I withstood a neck dissection and thorecotomy, the heart had to be in good shape.

Of course he wants me back on cholesterol lowering stuff so I said yes out loud but inside I said to myself, screw it.

  He thinks the kickboxing is a good level for me and any and all exercise I can get in.   But not the step yet, which of course, I learned the other day.  He gave me a print-out of what I can do.   He gave me an RX though for zetia [which I don't plan to take] .Funny thing - not really 'haha' funny - but we sat on the beach today with 4 people, all of which are on lipitor and their cholesterols are half of mine [or less ---like 160, etc.].  What a media frenzy!

7-10-03

By the way, we won $150.00 last week or so on the N.J. lottery when it was up at almost $200,000.00 [it was a surprise].

It is great about Larry because now Alan contacted his dr. and we have a list of the protocols they followed in his case.  If it works,  then since it is the same cellular diagnosis as mine, then maybe it would work for me too.  He's my own guinea pig.  That is horrible but true.

Last night we were invited for dessert at Marcie and Art's - she made a lemon cake and I made chocolate oatmeal brownie cookies. 

Today we sat on the beach again for a few hours, reading the Sunday paper and talking to passer-bys.  Most we knew - they were just walking up and down the beach for exercise.  Some stopped to comment on our 'tiki' umbrella.  People love that thing. One couple brought chairs to sit with us - they live in Margate full time and I met her a year ago [her father was mayor of Longport for 30 years].  She is a bit younger than us but we have some common interests. It was probably 15 degrees cooler at the beach than at our house [we are only 14 houses from there so that is a considerable difference].  At times you'd say it was actually cold.   But as soon as you leave and walk west, you can feel the blast of heat.  We are glad we went because it was refreshing and uplifting.  We use the beach as our living room and that is our main social activity in the summer.

First, today I was balancing the checkbook for the Foundation and it added up to 1963.23.  So you wouldn’t know how weird it is unless I tell you that in 1963 Alan and I had our first date .  It was on July 23 - 40 years ago. So the cents were '23.' Is that too freaky.

The other incident was we were in Shoprite in the lane where you check out yourselves and there was a problem with the register so the cashier had to come over and type in her code.  We were saying to each other we should remember it so we don't always have to call her over.  We said it may be too hard to remember though. Well both Alan and I were astounded [I could have typed it in because it was a number that I use sometimes].  It was 116. She typed it several times.

7-11-03

This is the busiest week.   Saturday is the BIG DAY. We are having our first fundraiser for the Foundation- Sat.   We have been planning it for so long and for a while back in May I thought I wouldn't be going to it. SO it is a special time.  Most people we know are coming just to support the cause and will not be doing much of the sessions; it will be like a happening.

We are trying yoga, tai chi [our own version], and all types of meditation.  We even went to a healing service last night.  How you and Rob feel about time, is the same as we do. This bout made our feelings about this even more pronounced.   It is has made us go about each minute only the way we want to.  The people that don't understand ---well, that's too bad.

 The way people relate to us is essential to our well-being.  You are correct; some forget that we each have an individual cytology.  Some people are ignorant and speak out of turn ---one guy said to us before my recent lung operation:

     "A MALIGNANT LUNG CELL IS A MALIGNANT LUNG CELL
REGARDLESS OF ORIGIN. BEING CLUED INTO THE CUTTING EDGE OF
DRUG THERAPIES, LETS THE PHYSICIAN KNOW YOU DIDN'T JUST FALL OFF THE TURNIP TRUCK"

The 'regardless of origin'' is the exact opposite of everything any dr. or book will say.  The origin is the key.  He didn't get that my lung cancer was not standard-fare lung cancer but a metastasis of the thymic cancer in the neck.  He insisted I should get standard lung cancer therapy.  I stopped answering him . . . I wasn't about to give a primer on small cell versus non-small cell and what you have is such and such  and I have which is a different type.  I never did this before but it is a cinch to just cut off types that upset me.

7-12-03

You are a terrific sleuth.  That is very interesting about the drug ET743.  They are using this at Fox Chase; when we were there I spoke to the oncologist about it.  It comes from the Sea Squirt.  Dr. ENgstrom said it is only in theory and not tested on animals yet.  Very frustrating. So we will pursue finding Dr. Parma and see what she can tell us.

It is very heartwarming to read your friend in Indian Lake will contact Boston. Tell her how much we appreciate this. Research is the only thing we need  now and it is gratifying to have help.  Yes, Alan has been through webmd and checks back often.

We couldn't find the broccoli seeds locally; all sold out by now so Alan bought them for me on the internet as a present.  He got 2 oz.  Should last a very long time.

We took a walk to the local dollar store today to get balloons to decorate the gym with and the owner would not take a penny.  Is she amazing?  People really have been generous to the Foundation and the fund-raiser.  I love a small town; this wouldn't have happened in H.V.  Oh, it helped that a reporter for the local weekly did a 3 column article on tomorrow's Aerobo-Thon.  It was a nice piece.

 The last year has been like that for me - a cyclic cough from the tracheitis, since the radiation burns - so sipping ice helps. For a minute.  Or a hot compress on the chest. There are these drops that have slippery elm in them [from the natural food store]. But Lifesavers are just as good. 

Now you have to not get it again; lots of anti-bacterial gel.  I don't hug or kiss any one; on purpose - even if they are not sick, they can be carrying the germs on them. I am being overly cautious since I figure it isn't worth catching anything that I don't have to.

7-13-03

Today we had a 3 year old's birthday [remind me to give you details - - - it was a train party] and then we were sitting on the beach at 34th with a group of friends & neighbors to relax finally about 4:00.  Remember, the beach is my  'living room.'  Well  they got hungry so I picked up the cell phone and called for pizza, hoagies, and steak sandwiches.  We sat by the water and had the best meal ever - it looked like a TV commercial.  Our umbrella was up [ 'tiki' hut like a grass skirt] and we had a little table with soda on it. We all agreed it couldn't get any better than that [...and the tourists were waiting in line for the meals that cost $50.00 per person at the hip and groovy restaurants].  HAHAHA.  Ours was $5.00 each. And it was flawless.

Thanks a bunch for your  donation for the Foundation.  For the 1st fundraiser, it was a wild success, in our eyes.

We didn't expect the response we got. We even got some press - the Current, our weekly, did a story on it.

Today we are getting calls from people thanking us for the aerobo-thon yesterday [we should be thanking them but they all loved it.  One instructor did Pilates, another did cardio dancing,  there was kickboxing, step, aerobics, yoga, and lots of door prizes [all donated].

Anyway, a few people got sponsors which brought the total up higher - we were overwhelmed at how generous some can be who didn't even know me.  Harold Weiner's daughter,  Lori, got her synagogue members to donate money.  She got a prize for the  most money in.  And Nancy also did the same in hers.  The instructors donated their time to teach the various segments and the owner of the gym did not charge and Shoprite donated bagels and bottles of water.  The dollar store donated balloons to decorate the gym.  And it was fun; the first session was light aerobics to rock and roll [50's and 60's] music and we ended up dancing a lot. Needless to say, I went home and went to sleep until today. It was exhausting.

7-14-03

I had no voice left by the time you called; I hate that but if it is only scar tissue I will jump for joy. Friday [at 9:00 a.m.] will tell. The dreaded cat scan.

My thighs hurt too.  I've got a hertz donut...it hurts, don't it, when you exercise.

Speaking of parties - yesterday it was the theme of trains.  The parents had trucked in a train!  it had cars and gave the kids rides around the property [I'll send that photo separately - let me know if you can get it].

Here is the train

http://www.neibauer.net/ANDREW.JPG

They had a d.j. dressed up like a conductor and the food was amazing.  The kids had peanut butter and jelly sandwiches.  We had wings [boneless - so easy to eat] in 3 sauces; I liked the honey mustard.  There were shrimps galore, hoagies, kugel, marinated vegetables and things I don't eat [sushi and other fish merde].  Drumstick cones, cakes, pies. Burp!

Must have been 80 people there. The house was built by a protégé of F. Lloyd Wright.  They hired a lifeguard to watch the kids in the pool.  Whatever happened to Burger King and Pizza Hut parties.  But these are the nicest people.  You'll see them in the photo.

Today we had to tally the donations and started logging them onto bank slips for deposit.  And then we were invited to a friend's condo for breakfast [7 blocks away on 27th ] - - - they just re-did the whole place and it was beautiful.  Best was the view of the ocean - they are right on the beach. 

Thanks for the compliments on the aerobo-thon.  We loved doing it.   People that have known us for a looong time are used to how different we are and never are surprised [after the trolley party they wanted to know how we'd top that].  Now how will we top this.  It will have to be the April 18th celebrity auction / luncheon at Resorts.  We realized that we are going to have to get help and volunteers for that, Alan and I decided that yesterday. I love doing things like this but there are so many details for 300 people.  We need to have people man the registration tables, the gift tables, sell raffles, etc.  It seems overwhelming. Now we need to sell ads for an ad book, get tickets, a d.j....oh my goodness...

7-15-03

Thank you so much. Our website is producing some unexpected surprises.  There is an expert on thymic carcinoma in Indiana - his name is Dr. Patrick Loeher [whereas most drs. see none of these, he's seen the lion's share...about 8].

We asked him to be on our Foundation board and he said yes.  He wanted to know what kind of research he could do to help out. We said that it would be helpful to know if the newly released cancer drug,Iressa, would help with thymic. 

So today we got an email that he will be conducting a trial on Iressa and could we advertise it on our website.  It is a big leap, but if I tested for the right receptor and fit the protocol, maybe I'd qualify for the drug.  This is the first glimmer of any treatment we have had.   Iressa is for lung cancer but it works on a certain cell, epithelial cells [my pathology report has some in it]. I'd have to be tested first to see if I am a candidate

 thank you so much.  We both appreciate it.  It is so hard to make plans and look forward to anything when we are living on tether hooks all the time.  We have a busy week next week, including an excursion to NY so we want, so much,  to be in a good mood. We haven't been there since this all started.  I'll fill you in on the phone but we are going to find celebrities for our April 18th luncheon.  We will be at ABC studios.  Do you watch All My Children at all? And then we won a charity auction for dinner on the Forbes yacht.

We went to Gilda's tonight to hear Dr. Langweiler.   After Gilda's we went with another lady, Sandy,  to Scoopwich on Ventnor Ave. near White Star.  It was annoying because as SOON AS I walked in I smelled cigarette smoke.  Alan and Sandy thought I was loco but I insisted [my lung does not lie anymore].  Well there was a back room with workers smoking and it had a window that was open to the ice cream parlor.  They owed me an apology.  Also the service was not friendly.  The girl pushed my dish to me. Cross it off the list.

Thank you for the extra prayers on Friday.  Hope God is listening to them all.

******

We appreciate your reply and thank you for being so helpful to me at this time and giving such thoughtful suggestions.  Of course, if you have others, they are welcome.  Our minds are open to anything during this trying time.   We have learned one thing from all this - there are so many people that show great compassion and they are a gift. 

Over a span of 30-some years I have seen quite a few doctors - especially when we lived in Philadelphia.  Finally after taking their toxic RX's, I realized that wasn't the path for me.  It was way before Uffe's group [thincs] was formed. 

The  statins were brutal to me:

    lipitor was the worst, resulting in a  kidney stone & terrible trigeminal neuralgia

    pravachol increased my M.V.P. and cause blurred vision

    lescol actually gave me a temporary vision loss and  severe back pain

    zocor caused severe constipation and bloating

    mevocor  caused blurred vision and leg pain

    red rice yeast caused trigeminal neuralgia

    niacin caused searing chest pains

    lopid caused g.i. disturbances

    welchol caused severe constipation] 

It was a slow evolution not to take any other medication they prescribed.

After my recent bout of health problems, my primary said that Zetia is new ''and benign; no one has reactions from it.''  Kind of like the ''check is in the mail,'' looking back. He and the radiation oncologist suggested I try it. Though I have read Uffe's book and every email posted, my team of drs. were very persuasive - when the patient is in the room and they are going over the CTA scan on the light board,   and they use terms like severe coronary artery disease,  the mind plays tricks.  Zetia lasted less than a month.  I got shingles, maybe from that, maybe from being immunosuppressed.

How very ironic your answer came after I just had my cardiology visit.   He was pleased how I could do so well on the stress test,  minus lots o'lung, which happened from a 2nd cancer surgery, just on May 12th.   He said I have the heart of a 40 year old [I am 57].    We were pleasantly surprised because it is the only good news we have had in a year and a half.  But then again, if I withstood a neck dissection and thorecotomy, the heart had to be in good shape.

7-16-03

The most important matter of all was that the Foundation got recognition.  Name recall will be so important and it has to start somewhere.   So that was definitely accomplished.   If it weren't for one woman bringing in $325.00 of sponsorships from her synagogue in King of Prussia, the total would have been $620.00 [some paid $20.00 each: most paid $15.00 each].  We figured 37 people signed up for the aerobo-thon, according to the sign in sheets.  And then if we add the $50.00 from Kelley Sparks the total is $670.00.  I included Marie in with those who paid for the event.

My sister is President of her synagogue in Northeast Philadelphia and she told me she coerced some people to donate and she has a few checks and cash for the Foundation that she will bring to us.    And the Current article caused a few neighbors of ours in Longport to send checks; we saw Nicole Evans tonight at class and she said she wants to send one too.

The Luncheon has the potential to bring in thousands.  A few of the auction items are worth $20,000.00, $3500.00, etc. So we now are turning our energy to figuring out how to get people there who will bid on those type of items.  We will have a range - from items worth $50.00 on up.  Most will be items you can't get at a store or on the internet.  So we will need to have volunteers watching the tables that day, helping out in a variety of ways.

We didn't go to the beach today; lucky us ---we were at shore memorial with my radiation oncologist trying to shove a mirror on a handle down my gorge.  I hate when he does that. What a gag-fest.  He couldn't see anything  even after numbing it.  He wanted to see me before Friday.

 Then I had to go to the imaging place and pick up the prep.  MMMM -2 bottles of chalk-flavored barium to which I will add chocolate syrup

we were worried about the IRS rules for tax-exempt organizations; seems that he can only help a certain number of board members.  But we only have one [moi] that would benefit from his care.

This is amazing...the Current article from last week, caused a few neighbors of ours in Longport to send checks to the Foundation [and some of these neighbors we have NEVER met]; we saw the lady who cuts our hair  tonight at the class at the fitness center and she said she wants to send one too since she couldn't come.  We would love to be able to sponsor Dr. Loehrer's research - even a smidge.

7-17-03

Sheila Rosen suggested it weeks ago.  We are already reading the Jon Kabat-zin book [the Full Catastrophe] and it is helpful. 

Thanks for sending that over; it is amazing.  It should be a done deal
already but it seems like the money goes overseas more than here for our own
citizens.

 Subject: Wired Magazine : The End of Cancer (As we Know it)


 From Wired Magazine, available online at:
 http://www.wired.com/wired/archive/11.08/cancer.html

The End of Cancer (As we Know it)

 Diagnosis. Chemotherapy. Radiation. Slow painful death. No more. A new
era of cancer treatment is dawning. Meet three scientists who are
 using the revelations of the Human Genome Project to reshape medicine.

That is the best thing people can do for us ; become eyes and ears for any new developments.  Your son sounds like he could be the one to do some very important work for a lot of people.  May he get the grants awarded to him!

Here is an interesting article a former student of mine sent to me.

7-18-03

Friday was the dreaded follow-up CAT scan.  Mmmmmm, mmmm -  after drinking 2 bottles of chalk-flavored barium to which I added chocolate syrup, they injected me with the radioactive substance.  That very afternoon the radiation oncologist was very dear and called and got a verbal report from the imaging radiologist that the Cat scanS were negative.  It was such a major relief to hear this after a long 7 months of horrible scans.  We feel like we gained a 3 month reprieve [and that gives science and all the drs. we know time to keep working on this].  Of course this is not a PET scan which is more sensitive and can detect smaller growths than a CAT scan can but for now, this is all we are going to deal with.

All the positive vibes and prayers from the multitudes of people are responsible for helping us get to this point.  So now we will keep on doing the meditation, yoga, tai chi, reiki, and eating brocco sprouts.  It only takes days and they are ready for chopping up and adding to food.  They have no taste so I can handle it.

You were right - let there be nothing to find.   Ever again.  I can live with not talking well as long as we know it is the burnt laryngeal nerve [did I tell you that is what they think is the cause now that nothing else shows]. I'll take that gladly.

An anecdote about domestic violence class.     We had homework ---to bring in a way we empowered someone and a way we were able to empower ourselves.  This was almost sheer genius how I wooed the class but dug the knife in the pain-in-the-butt-chip-on-the-shoulder teacher.

I brought in the tape of the Tae Kwon Do black belt party [YOU WERE THERE] and had it set at the part of the tape where my board was set on fire and I broke it with my hand.  I told the story how in 1963 I had to take phys ed and signed up for judo; they said 'girls can't take that.'  So eventually I did take a martial art and it empowered me and I put the tape in and showed that part.  The class loved it.

Since you brought it up, I truly doubt we will see hide nor hair of her.  We are sitting, when we go to the beach, at our own street [34th] and can't venture into Margate.  I can barely get the walk in to our beach.  She has been notably 'absent' the last year. If someone has to be told what is right to do, then their sentiment is meaningless.  It has to come from the heart.  It is really okay whatever she chose to do and initially it is a disappointment when someone drops out of your support system.  But it is always good to know upfront.  Needless to say,  she never was really in it.  She never sent a card or made a call to us during the last surgery [which was worse than the first] or recuperation or catastrophic news that the oncologists delivered.  She's in the same category as my Uncle [my mother's brother], s.' s brother, etc.  Guess I am supersensitive about this because of my upbringing.  My mother taught me certain actions I had to do for different situations. Most of it is really all common sense. I just hope when I was younger I never offended anyone by not understanding the scope of their disease and what they were going thru.  But I always believed in Hallmark.

thanks for planning ahead and considering us for a week at your condo. At this point, because of the magnitude of the prognosis, we really can't think beyond one minute at a time, literally.  That is the only way we can get by each day.  If I look into the future beyond one minute, the here and now, I will get so depressed that I can't endure it.  So as much as we can, for now,  we have decided all our vacation is the moments we are enjoying on the Longport beach this summer. It is the scope we have had to set for ourselves.  If anything ever changes for the positive, we will be there with thongs on.

7-19-03

WE CAN BREATHE AT LAST, FOR A FEW MORE MONTHS.  You're prayers worked – you did a super job this time.  There are no words to say how we appreciated your help.

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.

The celebrities that have had cancer are really tough to contact.  Usually Alan can find an email address for anyone but hasn't found any of them. 

We went back last week to one of the activities we enjoyed before my lung surgery in May.   We started volunteering, months ago,  for MANNA at the synagogue across the bay from our town - it is a charity here that takes 3 meals a day to sick people [the name comes from the old testament when  manna was found in the desert to feed the people].  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 said we'd to go and help every month.  We said it was a blessing when our neighbor brought us food each week when I was burnt last summer from the radiation so now we can help other sick or old people the same way.   It was so organized, assembly-line-like, and the chef is from one of the casinos.  Those 120 don't get slop.  The chef made us all lunch [an 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.

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. 

I really apologize; people tell me all the time that they don't grasp all I say about this thymic info.  I have to learn to break it down into smaller packages.  The Dr. in Indiana is Patrick Loeher and he seems to be a fantastic guy as well.  From what we have been told, cancer cells, as well as normal cells, have different protein substances on the surface of the cell.  Or a cell surface may lack a protein that is necessary for healthy growth so if it is missing, that isn't good.  If they can identify which proteins make the cancer cells grow, they can invent a medicine that will go in and inactivate that protein so the cell won't grow.  That is what they are calling the right receptor.  Deprive the cell of what it is using to grow and it can't grow...and we defeat the cancer. 

So in order to  'fit the protocol',  that means be able to get the medicine they invent.  TO be able to get that medicine, you have to have THAT ONE protein on the cell surface or it won't do anything. Eventually all cancers will have a medicine that targets the key protein that causes the abnormal growth.  It isn't far off - they have it for some cancers. 

I hope this explanation helps. Picture it like little Pac-men video games.  There are these little Pac-men they can send into your body to gobble up the evil doers lurking there.  But only one type of Pac-men can gobble one type of evil doer. 

The best part about you and I is that our pathology reports are similar.  We hear it is incredible that the pathologists identified what we have since they usually never see it. So what they find for one of us, the other may be able to use.  The words "epithelial" on the cytology reports are ones they don't usually get to write so that is what makes us so rare we are finding out.

7-20-03

Well someone in the class made a stereotypical remark about men are called aggressive but women are bitchey. I have a whole paper on these types of comments from when I was at the college. I'll send you one if you didn't have it already.

Anyway, I made copies for everyone and took it to the next class.  The teacher loved it.  I explained, if you remember, that it was part of a memo I gave out to the faculty when the 'old boys' couldn't get the titling right.  I was "Barbara" but a man with an associate degree was Professor.  Then we got into the lawsuit and some of my situations.   She told the class not to mess with me after seeing the karate tape.

 We just heard from our favorite daytime star at ABC studios and will be visiting there FIRST---before the Forbes yacht dinner cruise on July 23rd.  You remember we won that in the fall from a Make A Wish Foundation luncheon auction.  We had put it on the back burner for a while but I think I can do the trip up to NY..   JULY 23rd IS THE 40TH ANNIVERSARY OF OUR FIRST DATE.

We will meet him at ABC studios [if he is taping] or at a restaurant and will be visiting there FIRST---before the yacht dinner.   He just emailed us his new cell phone number; he is back in NY on the show, All My Children again.  Cameron plays Ryan Lavery and he will be meeting with us to discuss coming to the April 18th Foundation fundraiser bash at Resorts.  Maybe become our Spokesperson.  

 Talk about a nice sweet guy who doesn't let success go to his head. This type of support will make the celebrity auction!    We have met others from the show in the past at charity luncheons and hope to garner their support too.    We hope to be co-mingling on the set with the stars.  

Today we took a walk on the beach to the elephant in Margate where they sell chocolate water ice with chocolate chips.  That has been one of my goals to do and we were able to make it.  It is about a mile each way from our encampment.

We bought a 2-man 'boat' [actually a blow-up raft that you can sit in] and we lugged it to the ocean's edge today.  We sat in it and let the water float us up and down some.  But we only put it in 2 feet of water.  I get scared of water that is crashing at me. But it is restful to float up and down [puts you in that Zen state]. Especially since the water warmed up a lot. Tried not to think I was in the fishes toilet. Yikes.

7-21-03

 Alan had a lot of unexpected painful dental work done and was totally numb and swollen on both sides of his mouth. For the ride home,  I helped with the driving a little but by then I was so tired .  We both had x-rays and cleanings too.  This dentist, is one we trust  implicitly - we have had dentists in the past who drill the wrong teeth or 'invent' cavities that aren't there.  This incident, a corrupt dentist could have made a case for root canal when all Alan  needed was the restorative work. And he did all 4 problem teeth so we wouldn't have to do the drive again. Plus we got to see  Adam for lunch.

Now we have another permanent reminder - my right side where the lung lobe was removed. 

I can live with all the discomfort...easily...as long as I would know they won't tell me it returned.  The meditation and yoga etc. is helping train us to be positive as much as we can.  

How kind you are.  Thanks for the offer; we definitely would have considered a visit  if it wouldn't have added another hour of driving onto the day.  We needed to get home and I helped with the driving a little but my eyes were closing.

May we keep going from test to test and pass.  Makes you wonder about kids ---you tell them to get thru school as if they won't be quizzed anymore in life.  But the harsh reality is, that life is one big test after another ...and their little academic tests, unknown to them, are the easiest ones of all.

You'll love this. Someone wrote me that they "hope that this whole thing passes by and leaves you relatively unscathed."   It is way too late for that.  

They also said "I think you often feel worse while your health improves."   Unfortunately, we know this is going to become our way of life and it will never be over.  Certainly not the anxiety or fear that it will return, or worrying what they can do for me, and waiting for results each time.

Did I tell you about the other person who said to me, Oh, you're all better: you're thin."????????????????

7-22-03

Thanks for asking about Alan - we are so lucky to have found this dentist.  We met Adam first at Nifty 50's [a great restaurant on Grant Ave.]. 

Very good bargain with those tomatoes ---which by the way are great cancer fighters.  It is all over the news lately.

Tomorrow is NY city - lunch with Cameron Matheson and dinner cruise on the Forbes yacht.  Life can be good at times.  We go up with a lighter heart

Today we rode over to the imaging place to pick up the scans and report ---I HAD to read it for myself to be sure.

It is interesting how our perspectives changed after dealing with cancer.  I took a ride on Alan's new motorcycle [another story - for the beach] the other morning and it is a piece of cake.  Guess after the summer he had last year your Adam isn't afraid of many earthly things either.

7-23-03

LOTS O' PIXTURES FOR YOU TO VIEW.

This will sound like the 'old me.'  Be prepared.  I wondered where I went.  What a day today was. As you know, sometimes life gets good.  We really needed that day to reinforce that it is worthwhile having all this medical care.  So wait till you hear this one. 

 Normally NY doesn't thrill me but this type of plan makes it palatable.  This was as if we had a month long vacation rolled into one day. I felt like Cinderella.  The books on meditation, etc. say not to dwell on the past and not to worry about the future......just to enjoy the moment intensely.  Well, yesterday we had a lot of 'moments.' 

First we met Cameron Mathison and we went out for lunch at Cafe des Artistes near Central Park [if you look at their website, you can see the rooms in the restaurant  www.cafedesartistes.com ].  A lot of celebrities get interviewed here because of the little nooks and alcoves.  He is just the nicest guy - he will come to our April 18th auction.  He also volunteered for us to auction off to a high bidder, one hour at his gym with him. In N.Y. city.   He is so genuine.

 We met his new 12 week old baby but the nanny whisked him away before we took a photo.  He was just a regular person on the streets of NY - he went to the MAC machine, walked around without gathering a crowd, and just chatted as if we are old pals.  He wants Alan to help him update his website at some point.  He told him that he is the smartest person he knows.   We went up with our friend from Ventnor, Patty - we met her in kickboxing when we first moved here and she has been like a sister to me.  Her mother came and her 16 year old daughter, Melanie.  Mel came with us [she is an AMC fan] and her mom and grandmom saw a show [they picked the wrong move - well you know us...we like dynamic entertainment where we are part of it, definitely not passive like sitting and watching].

Then we took Cameron home on 66th st. across from ABC studios.

Hope you enjoy these pictures of the Forbes yacht [the Highlander].  It was too awesome  The 'boat' is furnished like a Ritz or luxury hotel.

We had the dinner cruise on the Forbes yacht that we won at the Make A Wish Foundation fundraiser and it was totally awesome.  The 'boat' is furnished like a luxury hotel.  The baths are marble and gold and the rooms have real furniture ---well, you will see ---look at the photos.  They tell you to explore the entire 3 floors, go outside and up to the roof and see the helicopter and smaller boats and 2 motorcycles.  They wait on you hand and foot, bringing drinks, dessert after dinner, wrist bands or Dramamine  and ugh- even dastardly cigars.  They served prime rib, fish, chicken, pasta and lots of goodies. Here it is.

 http://www.neibauer.net/Dayinny/album1.html

The ride was from NY harbor down to the Statue of Liberty, which was so astounding.  Most people went out on the deck and the wind was blowing the great salt air into our lungs as we passed it - and we all noticed the coast guard boat  guarding it.  Ellis Island looked lovely, all restored.  The ride continued around the other side of the island where you could see the skyline and empire state building and the sun setting.  We went under the Brooklyn Bridge, being served chocolate soufflé with whipped cream and raspberries.  What can I say - we were all so giddy all the way home and since then we all have had an 'aura' about us.

 As luck would have it, we were on with all media people - like Nickelodeon, Turner, Fox, etc.  All advertising, marketing, media planners...it was 75 others. On the way home, the 5 of us couldn't even grasp what a day we had.  We all called each other this morning and felt as if the aura of it all was still surrounding us. It is good seeing how the other 0.198% live.

7-24-03

Thank you so much.  It is not an easy journey but there has to be a divine reason for it.

Were you happy w/dr. Kaiser? I really adored him.  He was very good to us; I had tons of questions before and after and he was very indulgent.  His staff were too - Patti Abbott and Dr. Guy.  I heard from friends who are drs. that he was the best surgeon but a bit gruff and no bedside manner.  We didn't find that so.  He is gruff with his staff if they don't do what he wants but as a patient, to me, he was tops.

Tomorrow we visit the station [to the Margate Police station] and they will show me the room. It is a generous  space and set up like an office with desks] .  We got fingerprinted tonight.  I have to tell you how I had the whole class roaring - even the teacher who looks and acts like the church lady on SNL.  She never cracks.   She kept threatening "I'm gonna get you for this, I will." Yikes.

Yes, it would make a great scene in a movie, or a chapter in a novel.  We have been role-playing in class; we each have to play the victim of domestic violence in a scenario.  ANd then we have to play the counselor.

Last night I was a 30 year old victim with a boyfriend of 2 years.  We met in drug rehab.  In the last month, neighbors called the police on us 3 times because of loud noises coming from our house.  So for the first 10 minutes, the lady who played the counselor questioned me about what happened:  -was I afraid of him [I said no at first - I said he was just high and yelling] - do I want to file a restraining order- I said no, I just want him off drugs - was it all recent [I said the last few months he hasn't helped with the mortgage]. They assumed it was domestic violence because of the noise.

The teacher would jump in to give clues what to do.  Someone said  that I should be asked if I were afraid he'd get me back on drugs.  I had to think fast and make it up as we went along so I admitted that I was afraid he'd push a needle in me or when he was making his mixture he'd burn MY house down.  I told them it was my house and I worked hard for it. Lately he has been omitting his share of the mortgage and bills.

They asked what the police observed when they came.  So I embellished this [I have no idea where my imagination came from ---maybe kids I taught] but I said his eyes were wild and he just had nothing behind them when he was on drugs.  

And then out of the blue I said he was running around nude when the police barged in.  Well that is when the class exploded into laughter.  I had to tell them where my genes came from.  SBW of course.  It was that laughter that you can't stop - one person starts and everyone else joins in.

still-washing-the-ink-off - my - fingers,

Barbara

  7-25-03

Anyway, we thank you for the snacks and helping with William's tip.  You deserve so much for how great you and your family have been to us.  This was just a token of our appreciation. There are many things I just can't do and you always understand and accept me for who I am [like I wouldn't be making a dinner party now] but THIS I could do and wanted to. Some things are very hard for me and some are easy and this was an easy one.  All thru this ordeal you have read me like a barometer and always knew what to do and say.  Unlike many others that stressed me out - I tell you the stories .  SO Alan and I are thrilled we could bring some enjoyment to the 3 generations of Huggard ladies. 

Regarding my French fried laryngeal nerve - - - we don't know if it is permanent. SO far it hasn't reversed but has gotten worse so who knows.  If it is my only problem then I accept it gladly.  You know what I mean.

 Alan has been writing another book, the sequel to No Waiting to Die.  He is having a tough time concentrating.  As for me, I don't think I'd  like to write one.  It is hard to do that [at least for me].

7-26-03

Yes, several days of meditating is way too much.  If I can do it 20 minutes I am lucky.   It is very hard to make the mind do nothing for that long.

Tonight was the Longport annual picnic [with bbq chicken and ribs].  I bumped into a lady in my class  and asked her why everyone thought it was so funny.  Alan and I couldn't figure that out. He found articles on the internet and printed them for me ---on druggies prancing about without clothes so I can show the caustic teacher.  Each member dislikes her for a different reason and all are valid.

Bridgette said it was my delivery and timing that got the laugh and the whole scenario was so out of my character to begin with, even though I was believable, but they all know me first as who I am so this tale was not 'moi'.  And the fact the teacher laughed for the FIRST time got them all at ease. 

The evening out was pleasant.  It is held on the bay, at our city hall,  and it is one of the most beautiful panoramas ---the ocean and bay meet there.  There are boats going by and across the water are mansions and a harbor.  Gazebos are there and the lights on the lawn are little lighthouses. Not only do they have the little lighthouses on the lawn behind city hall, but they trucked in sand and made a nautical rope 'fence', etc.   Plus the salt air smells great.  They had the Woodland string band down from Phila., soft pretzels, water ice, cotton candy, and so much food.

This year Alan and I knew lots more of the 1000 people that attend; that made it more fun.  Between his zoning board contacts and my campaigning, we could have talked all night.  A few people came up to me and said they are still praying for me and I told them about the scan and how they are doing a wonderful job.

funny you mentioned the mayor!  The town is up for a new election soon and some have said Alan's name.  Neither of us would want the stress at this time.  It is a tough job.  But he did have a Letter to the Editor in the Current this past week.  Someone wrote in last time that the town should limit services after Labor Day ---because that jerk goes home to another house in PA.  He was inarticulate, using words like stupid several times, dumb...    He said they should raise the speed limit.  He got a ticket for going 34 in a 25 zone.  He was all over the place.  I will send you Alan's response that got printed.  The Mayor and commissioners came up to him last night and congratulated him for responding.

What an involvement.  Did you see the Current today.   Well the guy who wrote the 'stupid' letter rebutted Alan yesterday so now Alan rebutted him for next week, if they print it.   People were coming up to him on the beach and around town waiting for the next installment - maybe they'll have a debate sometime.  Yikes.

7-27-03

As usual we went to buy the Sunday paper, the Atlantic City Press [we weaned ourselves of the Inquirer a few years ago].  And  ON PAGE ONE - BOTTOM LEFT, is a photo of Cameron without his shirt, the big draw.  We found an entire story on him.    That TV section is such a surprise.  They never put daytime stars on it.   Cameron is the gift that keeps giving.

THE  TV SCHEDULE PAMPHLET was him on THE COVER PHOTO.  WE WERE SO SURPRISED.  You could here Melanie screaming from 10 miles away.  Is he on your TV page?  Certain syndications bought it.  This should help make the fundraiser a success.

The clouds and cool breeze today kept us off the beach.  We were going to head down there about 2:00 but people were starting to come back.  Maybe tomorrow will be more like it.  In the morning we have to go to a meeting for volunteers for the house tour that is August 4th.  We were asked several times so  we let ourselves be drafted so I said ok, if the house has no dogs or cats [and is air conditioned - since the tour is always on the hottest day of the summer].  The ticket money goes to charity .

We volunteered to help the Jewish Family Service next Monday.  They have their big fundraiser - several of the big mansions here in Ventnor, Margate, and Longport volunteer to let hoards [it can be 800] of people go thru for $40.00 each.  I can't imagine 100's traipsing thru  my house, can you? 

No handbags, no food or drink, no kids, NO TOUCHING - the stories we heard.  People will just pick up personal possessions [like photos in frames] or try to use the bathrooms.

7-28-03

The nap thing is new to me [since last year].  People used to call me the Eveready energizer bunny, I moved and did so much. It is ok to slow down during this and re-charge.  Your body dictates to you what you have to do.  And it can't be fought.  It is a different type of tired ---I told people last year when I got the radiation.

My drs. are the same way.  The  imaging center's radiologist is biased, in my case because he knows my history too well.  When he wrote the reports he would use "possible recurrence of metastasis thymic cancer.'' SO in April I went somewhere new.  And 2 last week, we had another radiologist read it.  They tend to be frustrated writers and like to embellish what should be plain and simple observations. So the oncologists really need to see the films themselves and have their team do the evaluations.

Someone I know at a major pharmaceutical firm heard comments that breast cancer could have been licked by now but 'they' don't want it to be  since it is a major industry as far as the health care segment of it. SO much money can be made with cancer treatments and medicine.  It really is despicable. 

7-29-03

I taught Melanie the word 'surreal.'  How else can you explain this. if WE CAN'T GRASP IT HOW CAN A TEEN. You watch the show and see him, just like you look at his picture in the TV listing and you know he is a big star.  But it doesn't seem real that we sat and had lunch with him like we do with a regular friend. It is like on another plane...that is surreal.  We know it happened but it faded into make believe already. He hugged and kissed us goodbye.  He informed us which direction the restroom was.  How intimate is that!  And we breathed the air he exhaled.  Ahhhhhhh......

I think after this, as our birthday party, I am very badly spoiled so I couldn't go to a fan event unless it was to help him out in some way [which we did in Feb. '02] ---...Alan created a monster.

I am so HAPPY to know you -finally someone who understands who he is. And can appreciate the saga. Many of the people we see don't watch.

The other outstanding news is we got an email that Dr. Loehrer, the expert on thymic cancer in Indiana [he has seen the lion's share -count them, folks on both hands]  agreed to be on our Foundation board.  He emailed Alan and asked what he can do to help.  Alan said research for a treatment. 

Well, he wrote back a week later and  will be conducting a trial for 18 people with thymic cancer [if he can find them] on Iressa and could we advertise it on our website. This is the first glimmer of any treatment tested for this.  It is so amazing what the Foundation can do in a short time. Iressa is a biological and NOT a toxic chemo.  You pop a pill and go about your life.  The future of cancer treatment.  This is the greatest news we could hear and you are right - God works wonders.  These people will be our guinea pigs.

We went to the beach today.  We sat with our new friend Sandy [from 36th] on the beach a while.  She just finished treatment for Non-Hodgkin's Lymphoma and has been very very down. After awhile the sun came out and warmed us up.  It was so peaceful.  Without the weekend craziness.    We really appreciate the beach for that type of meeting.   The weather doesn't matter since neither of us should be in the sun.

 Dr.'s orders [how does your Adam do it - I'd think he was told the same thing].  Sandy and I may go to Gilda's house together next week to share some sessions to help deal with what we both are facing.  

7-30-03

Whenever we traveled [we did a lot in the 70's and 80's ----ewww ...that makes us sound old], we always gravitated to a beach, no matter where we were.  Guess that is why eventually we moved to one.

It is ironic how now I have yet another name ...Cindy from Cinderella.  I have been called everything.  Especially when I taught high school monsters [well, we won't go into that - if I didn't give homework, they would have been nicer to me].  In high school, one set of people called me Bobbie [thank goodness that's over].  Then it was Babette [my French period]. Now it is Barbie - after the doll.  Hey, if anyone can be called Barbie it is me.  I have a Barbie beach towel and a lunch box to carry down our snacks in.  My following expects this from me - I have an image to keep up.  And I wear glittery bathing suits that sparkle so much from the holograms in the material that Alan is afraid someday one will down a plane if the light hits it right...or wrong. 

Last year, at my worst during the radiation burns,  someone really empowered me to get better by telling me she had a dream and in it I was on the beach, all radiant and better, wearing one of my shining suits.  So we took that as a good omen.

And you are SOOOO right about chocolate.  To me it is medicine.  It has to be one the nutritional Food Groups. And it is the food of the gods.  I  will send you separately, an article I had published in the local weekly.

And another ironic statement - you said to get on the back of the cycle and go for a ride.  Well we just got your email but Sunday we did JUST THAT.  An old neighbor walked by [by old I mean about 80] and she said she was afraid of the motorcycle and wasn't I scared.  So Alan said "After what she has been thru this year..."  Well, you know the rest.  We drove down the coast through 3 beach towns and over bridges, smelling the salt air and mesmerized by the views.  It was a 26 mile trip, my longest, and it was the best.  We stopped at a bakery we never knew existed and picked up some treats, loaded with fats and cholesterol.  Life is good at times.  We wait for those moments.

We go to the beach about 3-4 times a week, as Dr. Larry suggested.  It depends on the weather. 

Like Scott having no taxi fare, we were married in N.J. and when we crossed the bridge to come back to PA., Alan had no toll since his wallet was packed in the suitcases in the trunk. 

Did I tell you AMI donated money to sponsor the Foundation website. Isn't everyone the greatest.  We are thrilled.  I've had all my scans there and 4 were $6000.00 each!

To: Barbara Neibauer

Sent: Monday, July 28, 2003 7:53 PM

Subject: back from the Adirondacks

barbara, i suspect that you are very familiar with the medline web site. i noticed, however that the thymus cancer page indicates an update as of June 2003 related to clinical trials. you might wish to check if you have not done so.

 I am definitely up to it and will have to come and sit by your garden.  What day is good for you.  I love flowers [once we entered the Phila. Flower show and I got a red ribbon for a formal flower arrangement on a pedestal].  We love our garden here - Bayview nurseries did it.  Feel free to walk in our yard if you are ever over this way - go thru the gate and see the garden - even if we aren't here.

You are right - we both got the best.  Our Prince Charmings. To be treasured.  Sometimes the word 'love' doesn't sound nearly sufficient.  Many of my friends ask if Alan has a brother [to match up with their daughter].  No, and he can't be cloned either.  I feel so blessed by our years together and all we have done that I could never complain about anything else that happens in my life. Some women don't get one day with a man like this.

As for being friends for a long time...no doubt we will be.  Because what Miriam says is "no one ever leaves your life. People always come back to you."   It is a strange phenomenon - almost spooky - how people from my past gravitate back-especially this past year and a half. Stories on that too.

7-31-03

It was such a lovely lunch and interlude of friendship and conversation.
There are some things I CAN & WILL DO and others that I just can't.  So
please accept the South End goodies as what I can do without un-nerving
myself at this time.

 I have this special arrangement with our friends Eileen and Alan on Madison
Ave.    She CAN'T entertain, serve, cook, and play hostess but I can do
those things for her in her house.  She doesn't mind people in her home but
I get un-nerved.So I do all the serving and cooking and hosting in HER home.
I bring the food - she puts her feet up.  Very symbiotic and it works out
perfectly for the both of us.

Someone just emailed me this and it reminded me of what your daughter said to you:   "If you have to live from scan to scan, you will get used to it and the fear will lessen."  She has no concept of what our daily diet is [and this is a PSYCHOLOGIST].

So I had to write back:

" I doubt it unless we can go a loong time with some normal scans which I have not had.  Put 5 years between me and the scans and not 3 months and then maybe we can talk about lessening fears...  This is too enormous to ever get used to.  The scan means you  live or not. You suffer with a treatment or not.  Or they don't have a treatment for you.  It is just too big to deal with.

8-1-03

Today we had a surprise call.  The Garden Club of Longport  invited me to their next meeting.  Originally - 4 years ago - I told someone I'd like to come and help their cause. 

Anyway, word around town is they are going to make a donation to the Foundation.  I won't be able go if it rains.  The woman has 3 cats in her house; it will be held outside if nice and then I will attend.  The cat dander would close my throat in a second.  B.C. the dander was a killer for me ---imagine now!

That was also exciting news to read you'd like to be a nurse.  The ones who took care of me the last 2 times I was in the hospital were wonderful.  They were so compassionate and helpful and just did so much to make me feel as good as they could.  I email a few still.

I was a medical technologist - went to college 4 years for that - so it is a similar allied profession.  I was in the lab and you'd be with the patients.

8-2-03

That is the worst feeling when you are all psyched up - they have no idea of the mental torment we go thru when you know you are having the scan.  They can't imagine the depression at the delay.  I had that in December because the machine broke. They fixed the machine but my radioactive dose expired [it has a shelf life of ONE HOUR].  It comes from New York and we had to wait till the next day.

I was a basket case and did not take the day delay well at all.  I had taken the prep material, got the insurance forms okayed, and it all had to be done again.  No one would even touch on comprehending the downer unless they had what we had and were expecting to get it over with and try to go on with their life, etc. etc. and blah blah blah.

We walked down to your beach today and even past it - I felt like a few more blocks - but we didn't see you.  The weather would go from sunny to cloudy in seconds.  If we get to the beach tomorrow,  it will be later.  We are meeting a friend from high school half way to Phila. [on route 73] for breakfast.  I haven't seen her in 40 years.  We got re-united thru her nephew who is my neighbor's son-in-law. And for the last year she has been emailing me encouragement.  She lives in Pittsburgh and is in the city to see her 92 year old mother.

8-4-03

Today we were in Berlin, New Jersey [ where Kelly Ripa is from].  It was a pleasant surprise to see it only took 50 minutes.  I haven't seen my friend in 40 years, since we'd ride the trackless trolley and then the El to Temple University together.  Felice's father was a rabbi.  She had her sister  drive her.  It was a nice time.

We'll lift the requirement of a passport to enter onto our beach - after all, it is our fiefdom, as Mr. Slaw says.   Don't be silly - you are so welcome to sit with us  any time at all. We'd love you to join us but know it is a bit of a walk.  You are so funny...like we own the sand.   We are of the belief that the more is merrier.   And that way I don't have to talk all the time [my voice just goes if I go on too long ---but my fingers can type forever]. It is a nice congenial group that congregates.  People float in and out of it most of the time.  Some come from Margate [our old group] and bring a towel to sit on [not comfortable for a long time] or their chairs.   It is just so serene and we all get a lot of pleasure with the interactions.  If anyone gets tired we have a 'rule' that it can be reading time whenever they want and then it looks like the library with our noses in books.  Or a segment of the population will go for a walk.  It is a nice balance of activity and personalities.  You never know who is dropping in.  Today it was the Mayor and son and commissioner, inspecting the beach. 

Coincidentally, in our Sunday paper, there was a terribly negative article called "Curing the big C: eliminate cancer? Not in the foreseeable future, says one medical researcher."

It talks about 'disappointingly difficult' new treatments, 'the fight against cancer  will continue to be a tedious slog, and victories will be scored in weeks or months of extra life, not years.'  And on it went ---for columns upon columns. We all know that if they can put a man on the moon and bring him back [most of the time], then they can be doing a lot more to lick this thing.

We made some progress this week for the April 18th luncheon.  Forbes just donated a dinner cruise, similar to the one we won at the Make A Wish Foundation,  on his yacht "The Highlander."  We have some really different
auction items now.  How we got Forbes ---I don't know.  We won the high bid for the dinner cruise, went and loved it, and sent a thank you letter [with the Foundation website on the bottom - the default note Alan put on my computer].  They wrote back and offered it for two.   Soon we will start forming committees and booking tables.

Another Foundation tidbit.  A lady emailed Alan on the website that her husband,  just died of thymic cancer.  For something so rare, we get a lot of mail on this.  Anyway, we will, after a proper amount of time try to find out more about his illness to be sure it is the same.  In the meantime she wants to put in the obituary that in lieu of flowers, to donate to the Foundation.  He had a lot of friends!  

OK - now here's this for you. You are getting to know me by now ------here is the coinciding. Her area code is 856.  That is not far from here...Turnersville, Marlton, etc.  So again, for such a rare cancer, to have two so close in geographic area would prove to be bizarre.  AND her best friends who brought her thru this ordeal live in LONGPORT and they told her about me - they told her they met me when I was campaigning for the school board.  [note: here is where you play that twilight zone music]

Yesterday  we were at the beach yammering and forgot what time it was so when we walked home and up to the house, we were hungry.  We  saw a package, which is unusual for a Sunday.  And when I opened it, SAND AND ALL, we found Jagielky's chocolates and had to eat one each.  No discipline.  It was from Patty and her mother, for taking them with us to NY.

But there were also tee shirts.  Alan's is with NY fire dept. logos embroidered - he is always getting compliments on his NYFD hat [people are so touched when they see it] so I bet the shirt has the same response.  But my shirt is just what I need.  It has an open neck which is perfect, as you know.  Normally, as a full figured mature woman, [hahahaha]  I'd never wear these flimsy spaghetti-strapped shirts but they are all my neck can tolerate. Anything with more coverage than that, I keep pulling and yanking so I am tickled to have that and probably will wear it over and over and not care if people see me in the same thing.  And it is SOFT!

We finally found a bench for our front patio ---the seat is really a lid so it lifts up for storage and people can always leave things in there for us. We were looking for the bench for 4 years and finally found it.  It was for the mailman and UPS guy - sometimes they'd leave our mail and packages ON THE TABLE.  We have strong  winds here.  So things would blow here and there.  This way, they stick things in the bench and we know it won't go anywhere.

Our neighbor's next door rented the house for 3 months.  The couple's house in Ventnor had a fire.  The tenant's son and daughter-in-law were very nice; unfortunately they aren't the ones here.  The tenants may be nice people but already they are driving me crazy.  She smokes...it seems continually.  I don't know if he smokes or if she smokes in the house  but she smokes very often all throughout the day, outside on the patio.  It would not be a problem if God did not invent wind.

But when it blows in from the west, the smoke is coming into our house. Since the lung surgery, the drs. told me NOT, under any circumstance, to breath in smoke.  Since the radiation caused burns in the trachea and esophagus,  smoke chokes me anyway so they probably didn't have to warn me about it.  One trip to the casino made me carry a tissue over my nose because I couldn't inhale, the smoke hurt so badly.  The sensitivity of the neck area has not abated. 

SO we have to close our windows when she is out there puffing away.  Now we resorted to putting on the air conditioner, because it is too hot to  keep it closed so often.

HEY I am now wondering if her smoking caused the fire in her Ventnor house.

I forgot why I wrote in the first place.  On the beach this dude started walking towards our umbrella.   This happens all the time - people want to know where we got it - it is a tiki hut [looks like a grass skirt].

So I said as  he approached, "I know, you want to know where we bought this." 

Alan said "No."  It is your cousin.  It was Doctor Morris Levin - Lillie Levin's son [Carolyn's brother]. 

Yes, thank you - I received your answer. I only go on the computer once a day now or even every other day to do answers to emails so don't worry if it takes a few days. You know how it gets ---I was spending way too much time on it and neglecting  the present.   Fighting this latest battle made me see that.  

8-6-03

A young woman [a nurse who commutes to CHOP] in town has been battling melanoma.  She called today; her cousin has a thymoma and went out to Indiana to see Dr. Loehreer , our new board member.   They had given up on this woman - she was so sick.  And now she has her old life back,like a miracle. He seems to be the THymic guru.  Dr. Loehrer is one of the keepers of my glass slippers. He is like a barometer ---what he does daily in his research pertains directly to us.  He is working for us more than any other researcher.  This gives us the incentive to keep trying to raise more money to fund important research like this. It will mean life or death, literally for many people.

Like you, I wonder how many of 'us' are out there.  It is with mixed emotions that we are finding more - considering that this is so rare, then the cases we find are at an exponential rate.

I know how you feel about just feeling better and enjoying it.  They bring you as close to death as they safely can so when you put space between that existence and heading back to normal, you appreciate anything.  You don't complain about the things that used to bother you.  They become a pleasure.

The other day, the Longport ambulance came to the house in back of us [on 35th].  It took a lady with cancer to the hospital.  Today I saw it in front of our house ---turns out they took my new corner neighbor to the hospital.  She had passed out we heard; beyond that we have no clue. Very un-nerving.

We spoke to her husband this morning. Our neighbor, Ann, has an acute blood infection.  Last week she went to Lankenau Hospital for a cystoscope.  And then yesterday whatever she caught during the procedure blossomed into a multitude of bacteria and she had a high fever and was unconscious.  They got her to the hospital just in time. Isn't it terrible how hospitals and procedures breed so many further problems.

Alan and I were both so freaked out by all the coinkydings.  First, we were there Monday.  Our friend has an email list of 100's and puts out messages for charities.  SO she asked for  volunteers for that house tour for the Jewish Family Service  Monday.  They were really short-handed and asked a few times so we signed up. For a couple hours. I never went on it before - even when all the ladies on the beach would go each year because it is always the hottest day and I didn't want to stand in the sun.

I met so many people we knew - one lady from when we were 16. If you volunteer you get to see the other homes free so our stint was at 1:00 P.M. and in the morning we could visit the others.

Thank you for the websites [one we were familiar with].  I didn't realize that is what your company does.  Again, how small are the chances that would be your realm.  As you can see, there have been no trials for Thymic Cancer [until just now -Dr. Patrick Loehrer, our new board member].  We hope the Foundation will help change this.

So now on to the 3rd coincidence.  The garden club.  Grace  called last week and invited me to attend tomorrow's meeting.  

When you said you worked since 15, I could well understand.  Actually that was one of my rationales for stopping.  I calculated that every morning of my life from the time I started school at 5 through the years of high school and college, I got up so early.  Then it continued with working - every morning for another 25 years of getting up early. I felt better physically once I didn't have the pressure of rushing out of the house every day. 

As to what to do.  You are involved in so much I don't think you'd have a problem.  The days fill up amazingly - with still no time to spare. I can't figure out where all the time goes. And still there are projects left undone.  I always wish I had more time to play the piano or paint.  But that takes a back burner most days.