August 7 to October 6, 2003

 

 

9-7-03

Chronic pain is pain - it is something to share just the same. The drs. have told me to try meditation so I pass that on to you...with practice you can do some different levels of reducing the pain.  We haven't missed one day since we started.  I sound like a hippie.  We both were ready for this and are armed with tapes and books.

 

Thank you - as always - for the holiday invite.   You are so sweet to include us and we do appreciate being thought of.  We really want to try to plan to come up Saturday, September 27.  It is easy to say that now, sitting here like a blob and I just hope to actually do it.  It would be nice not to be a sluggard. I can bring whatever you need - hors d'oerve, turkey breast, dessert, you tell me what you are deficient in.

 

9-8-03

It was so sweet of you to mention whole foods.   Thanks for thinking of us for dinner tomorrow-if had I known  last week, I may have been able to schedule our Resorts appointment closer to the time of the dinner. As it stands I doubt I'd be able to come back ---I tire too easily and know I don't have the stamina to busy myself for a couple hours on the boardwalk, etc. and then come over.  My low energy level is the one thing I can't get used to.  Very frustrating.  

 

Never finished the Vincent story.  When we met him at the Make A Wish luncheon I told him he was 'supposed to visit me last May' and Karen made it up.  He said, "Oh, you're the one.'' It is so weird ...as I am writing this he is on the TV [my tape].  Anyway, he was so apologetic and that is why I am getting the pity vote from him and he is trying to come and make up for what she did.  I'll take him anyway I can get him.

 

9-9-03

So many people are emailing us back pages of great ideas.  The only problem is right now it is just the  2 of us trying to do all this and we can' even begin to handle all of them.  So anyone that can send out letters or make calls to help is a big relief.  We have sample letters...we just physically can't get to all of these places.  It took us 6 hours today to make 7 packages.

 

 If each person that suggests a business would contact it, that would make it less stressful here.  We are feeling overwhelmed at this point. If you would want to try Red Door and maybe try to get a casino to donate a weekend stay, that would be a huge help plus we'd get nice auction items or an ad for the adbook. Thursday I can bring you literature. Some places can be emailed, some called. It is just a matter of time.  Even Melanie could do with her friends - they love to yammer on the phone anyway.

 

We spent some time on this already and had absolutely no luck with getting answers from the casinos [when we were finding a place for the luncheon].  We have a friend that knows the president of Resorts and that is how we got that arranged.  We do have a golf course auction item already. 

 

An idea! Can you put up an 8 X 10 poster for the luncheon at your job [and anywhere else  you all travel ---]?  We have color ones with little tear offs for people to take home [with the ticket ordering info].

 

 The ocean when it has high waves is awesome.  At our old condo in Margate there was a storm in the early '90's where it came over the bulkhead and down our street.  At the same time, the bay did the same.  We couldn't get out ---we had to wait till low tide.  That cured my lust for seeing bad storms. Only on TV!

 

Thank you for offering to post a flyer. You are so dear to us.  I wish we hadn't sat so far from you on the beach this year.  DO you plan any fall trips down?

 

I'll send you some flyers - if you know people that want to come, maybe you all can get a table together [there are 10 to a table].  And it would be a good idea if you can, to  urge people to get the tickets now.  We already have about 10 tables of people from groups that want to stay together.  We can only have 250 [maybe 300   TOPS].  And we have an ad going into the "ABC Soaps In Depth" magazine, which means the tickets should fly out of here.   We don't want any of our friends to be disappointed - my parties are usually off the wall and this should be a spectacular event.

 

We just heard from the resident of the surgeon I had for my first operation at Temple last year [March,  2002] and she is presenting the article on my case at the triological society meeting in January.   No one had ever presented on this type of cancer before.    Medically, I couldn't be treated any more special even if I had 2 heads. Alan always sings to me that 60's song, "One in a million."  Well, I'm happy as long as I am here to give them something to write about.

   

You were THE BEST visitor ever - no pressure - all fun conversation.  Come anytime.  What a pleasure you are. Someone who understands me ---well, even if you don't understand me [because I don't get me sometimes] at least you let me be me.   But you have to eat something [that is my mother in me -the voices in the head - serve your guests, give them good, entertain...]

 

The drs.' referrals.  First, Dr. A. called and asked to talk to one of our board members on the Foundation because he read about him on our website.  This one particular dr. had experience with one technique that Dr. A. felt he could use for one of his patients so Alan arranged for the 2 of them to talk.

 

Then the dr. at Hahnemann had a patient from N.Y. [who he described as a well-known distinguished gentleman].    I wonder who  it is. Anyway, the dr. read the website about our Indiana expert and wants to talk to him about his N.Y. patient. This is all about drs. continually learning, which is a good thing that they realize they need to keep up to date, and thus it is saving lives.

 

9-10-03

Our friend Patty in Ventnor suggested we get committees with heads of them,  to coordinate that one topic.  Would you want to be in charge of the adbook. Alan will type in the ads as they come in and get them printed. He will take care of the other pages in it also - the mission, listing the auction items, rules of the auction, etc.

 

All we need is someone to be in charge of the actual ad-getting and have contact with those collecting ads and giving them their forms and whatever else they need.  We have sample ad books and need to find people to go after some of the advertisers in them to see if they'll advertise in ours.

 

We know it is a lot to ask so don't feel obliged if you haven't this time - maybe you know someone who'd want to do it.

 

By the way, for our friends, and donors like you, we will give them their ticket for free if they  get a group of people to form a table.

 

Thank you!   That is such a sweet note!  If everyone feels the way I do, what you do is extraordinary and a blessing to the whole community.  We will re-name you Mother Theresa-Emily.  Your service has such far-reaching benefits to us all.

 

You're right...it is terribly overwhelming.  Especially because we rushing.  Trying to get everything organized and in place and get a lot done now for the auction;  just in case. You know what I mean  [I can't bear to write the words]. As part of my "Marshall Plan" of continual assessment, October 15th I go for my follow-up PET / CT scans [high anxiety time]. We hope they are pristine. But there is always that little tiny corner of your mind that tells you never to get over-confident especially when you've been shot down so many times.  I just feel the need to do all I can while I have some energy and just be prepared so the event goes off without a hitch.

 

Alan just put a sneak preview of some of the auction items on the website. Take a look - you can email it to your sisters and friends. He did an amazing job.

 

9-11-03

We were at the fitness center [I get physical therapy every day since the 2 surgeries and radiation] and the woman next to me was reading while she was on the trainer.  She showed me her book [on meditation] and when she lifted it up, underneath was your book on the Cholesterol Myth.  I was so happy to engage in a discussion with her.

 

She will surely spread "the word!" 

 

Then we were driving home and on the radio we came in at the middle of a bit by a medical reporter saying, "the news I am about to give no dr. has said before and it has been erroneous for decades..."  And Alan and I were waiting to hear that cholesterol levels do not matter.  Well, it was new information on asthma.  But one day, the report will say those golden words."  Our group will be sure of it.

 

Speaking of Sliding Billy ------I have been asked to give a talk in October on how to do genealogy.

 

I wish I could help you deal with your diet and weight concerns.  If you ever want to go to the fitness center with us, we'd love you to join us.  Everyone works at their own level. I believe 'energy begets energy' .  I know it is hard for you to go to a gym because of your work schedule though.  But we know a fantastic trainer and she can give you things to do at home too with weights, bands, balls.  Do you like to walk - because we walk on all the boardwalks and love company.  We like doing social things that ARE NOT centered around food.  We like to bike.

 

9-12-03

You hit the nail on the head...trying not to think of hospitals, treatments, etc...becomes a priority in between scans and drs. visits.  I can separate that from the Foundation work [in my mind I am planning one of my parties - I try not to think of the connection except when I am high pressuring someone].

 

By the way, we were invited by the publisher to send in some ads to ABC's 'Soaps in Depth' to their Starsearch section...where they list upcoming events.  I know her from Make A Wish so this was a real stroke of luck when I got her email tonight.

 

I am trying not to think of hospitals, treatments, etc...becomes a priority in between scans and drs. visits.  I can separate that from the Foundation work [in my mind I am planning one of my parties - A Barbie party - I try not to think of the connection].

 

We are simultaneously trying to get ads, auction items, door prizes and items for 250 goodie bags.  We have tubes of toothpaste, blood pressure cuffs [Smith Kline], and big clips [from the bank].  I am trying to get pens and tablets.  Things like that. It is intense at times especially because we are accelerating our pace. 

 

Last night we met 2 friends at Red Lobster, who will try to give us some help. Guess I won't have time to paint for a while.  I got out the watercolors but never get near them.  We found some sparkly 'sticks' to put in the vase with the flowers.  They were on sale at Joanne Fabric.  I'll describe it to you on the phone.

 

Alan just put a sneak preview on the website.  Have you looked at it. Please see it.  It is the one above. He did an amazing job.  We are making so much progress.. . finding patients with similar conditions, finding drs. who will do trials, and meeting many of our goals

 

9-13-03

My skin healed but to this day it is still so sore I can not cover it with any type of material.  Just the pressure of fabric hurts.  When I am out in the sun for a walk or bike ride, I need to cover the area still because I never want it to burn again. So I hold something there.  And I sizzle when someone tells me to wrap a scarf around it. No matter how many times I tell people it hurts to put something on it, they do not get it.

 

A young nurse who lives near me  has a cousin, age 44,  who called me yesterday.  Marianne has had thymoma for 14 years!  She just finished her set of radiation treatments and told me that the next to last one they goofed.  They forgot to change the plate before they did the other side of her neck and she kept calling to 'them' but they didn't come in. Which is unforgivable to begin with. Her head was bolted to the table in a mask and she couldn't move. She saw it all happening -  the radiation hit her eyes and brain and she was livid.   She has started the complaint process and I put her in touch with a friend of ours who has a law firm in center city Phila. [she does malpractice often. ] There are too many stories like this.

 

9-14-03

I appreciate all your assistance.  The letters are especially a help.  We bought a lotto ticket for the 75 million dollar drawing on Tuesday night; we said we'd get an office and administrative assistant to help with all the mountains of paperwork.  If we didn't have to share it then we'd buy a house and have the office there and have thymic patients come for vacations.

 

Yesterday we stayed about 2 hours on the beach.  It was nice.  NO BUGS for once. Bonnie and Rich were down and we haven't seen them all summer so we met them on the beach halfway---for each of us.  We were sitting in front of the dunes at 36th.

 

We have had no contact with your tenants.  It is better this way - I am not sure what I can say to her but the smoke is more than offensive - it starts me coughing when it comes into my house and that hurts my chest. I know for sure, that if I were sitting outside doing this and it got into the house of someone who just had major lung surgery, that something would be said to me.  

 

We are wondering how bad this Hurricane will be this week; hoping it will fizzle out, like most of the storms they over-predict.    But the news is using adjectives that are pretty strong...and they are telling people to be prepared to evacuate [like pack bags].  We made a mental list of what to grab.

 

That is a good idea - making a weekend out of it.  A lot of people are doing
that.  We have a friend from Harrisburg who is bringing her husband,
daughter, sisters, and some others.  We are waiting for an answer from
Resorts on the cost of hotel rooms for guests to the luncheon. I'll have to
let you know when they get back to us.  If you have any friends at work who
want to go or your sister...or ask Roberta, etc., you can get a table of 10
together,  we will give you your  ticket for free if you   get a group of
people to form a table.

 

9-15-03

It meant so much to both of us.  We know how little time you get down here and how you like to sit, read,  and recuperate from your stressful weeks.  So we are extra appreciative that you let us into your space awhile.  

 

The other day we spent at Resorts planning the event for April 18th with Patty, the woman in charge of banquets.  She is wonderful and throwing in so much. She had cancer a decade ago...there is such a rallying when a person or someone close to them had cancer.  The room is lovely with hugmongous chandeliers. They will do a good job I am sure.  That is the part I like, the planning.

 

They can be good understanding friends.  She tends to minimize anything to do with cancer, though.  We have a mutual friend, who has ovarian cancer and had chemo for 17 months straight. It ruined her kidneys and she has been in the hospital for a months. Her husband told us he doesn't expect her to come out. It is very upsetting. She has had 4 operations. But  in her own way,  ______calls them PROCEDURES.  She treats cancer as if you had the flu.

 

She has never helped at manna since it interferes with her daily round of hitting the stores.  Lately we find we know quite a few people that don't work, like her, and they do nothing all day. Of their activities that they do, most are selfish and meaningless and they don't know the meaning of helping others or charity or benefits.   They just are not volunteer types.  Now that we are so busy, like chickens without heads, I am resenting them for not offering to help in even the smallest capacity. It is the people that work that have volunteered so much.

 

  But God forbid I should come between them and their steady stream of games.  _____even says she has no time to even make her husband dinner [he works all day so he shops on his way home from the office and comes home and cooks because she goes from game to game].  Can you imagine? 

 

we are listening to all the news stations a few times a day.  Interesting how different they all are!  You'd think the battery, duct tape and spring water manufacturers are behind the hype.  We can only hope.  We have the keys to about 3 dozen houses in Margate and Longport [plus their security systems have us as a contact].   We often get calls from Brinks or the police saying someone's pipe burst.  So we would be happy to  add you to this elitist  list in our fiefdom ---wait till they all get our bill! 

 

This Hurricane hype is starting to get everyone in a panic.  Yesterday I called a friend and her mother answered and asked me if I have a plan.  Silly me.  I thought she was talking about my scans for 10-15.  She meant Isabelle.  Today Alan dropped a piece of mail that came to us in error at our neighbors, who were all on one patio.  They were making evacuation plans.  And all day, this is how it is going...person after person we talk to. So we are now deciding where to go, how far to go [Phila. or Seaview Marriott], and if there will be a town to come back to.  We now can fathom what happened to those first 10 streets in Longport. Our town starts at 11th Avenue.   100 years ago, the first 10 blocks were washed away. Yikes. Like we don't have enough aggravation.  We live right in the path of the hurricane racing up the coast, can you believe this?  We are in Longport, New Jersey which is about 20 minutes or so south of Atlantic City and we are across the bay from Ocean City [it is known for its family-oriented boardwalk which is out of the 1940-50's. 

 

May as well make a happening out of it.  Also we have tons of Foundation auction items and we are just wondering what to do to store them.  This is getting creepy. Just thinking of this. we both are on over load.

 

9-16-03

 

Alan just finished putting together the newest update on the Foundation; he did a great job.  I am so proud of him.

 

Go to the Foundation website at 

 

    www.thymic.org

 

And click on the link for the October, 2003 "Newsletter"

 

Feel free to pass it on and on to those in your address book .

 

Have you had any luck with the  ad book forms [feel free to take them with you when you shop. ].  Wherever you frequent.  No one has turned us down yet - it is just a matter of only so many hours in the day.  We want to get to all these places but have been so busy sending out letters and packages, we barely leave the computers---and post office.  Maybe anyone who has a business would like to advertise.

 

 And we have a 'friends' page for just a name listing.  For people that need more info they can look at the website or you can give them all or one of the pieces of literature we could give you.  There is a Board of Director's list, a newsletter, a newspaper article, and a sample letter . It is all on the website, too.

 

I am going to make an appointment to see Adria Light - do you know her .  She does two things to relieve stress & promote healing.   Reiki  & the technique "Prepare for Surgery, Heal Faster".  This is a very deep relaxation/guided visualization technique that can be used for stressful medical tests.  It will help me with the upcoming PET scan,  I hope.

 

It takes about an hour & you will receive an audio tape to take with you to use regularly to produce a state of deep relaxation. 

 

Any interest.

Yes, you have a good idea of my life style, which doesn't include any hand maidens.  I don't want people in the house at this stage and it certainly wouldn't be folks to clean.  When we were youths, I tried cleaning services, but as a perfect Scorpio, no one can do it as well as I can.  In fact, I felt as if they made the place dirtier.  So we either do it ourselves or it doesn't get done.

 

By what we did tonight, you'd never ever think a storm was on its way.  We met a friend [she is very special - she is the d.j. on the oldies station here and has been so supportive of me all along the way].  We met her at this totally seashore-type restaurant on the bay and we ate on the porch. We were watching the boats on perfectly still water as the sun set - the colors I guess, are a tease for what is to come.   We couldn't believe how beautiful it was, a perfect 73 degrees, no humidity, clear sky.  In the summer, you can't get into this place - the tourists!  The locals love this time of year.  We get our towns back.

 

She is getting us some free announcements at the station and some ads from some boardwalk stores and posters in those stores. It used to be "Allison in the morning" but she switched  times because she has rheumatoid arthritis and that 6:00 a.m. drill was tough. We come from the same city and had similar jobs [the lab].

 

Yesterday we went out and bought the obligatory batteries and bottled water [and Alan's bags of pretzel sticks and Dots]. We are making ice and filling bathtubs and pots with water, fastening outdoor items [or stashing it away], and selecting items to take with us in each room, just in case.  We have a 2-man boat but no oars.  Isn't that a scream - I only use it to float in the ocean. Imagine, my obit - the barbarella had 2 surgeries and radiation and dies by the hand of Izzy. That was a bit of Sliding Billy Watson in me.

 

  If you are here on Saturday, we are trying to put together volunteers that would drive the celebrities to various places, if they come a day ahead.  For example, 2 of the actors want to play golf so we need to get them to the golf course and back.   It is a dream 'chore.'  Maybe the female actors want to go over to the Ocean City boardwalk?  We won't know until that day but we want to have some volunteers on standby.

 

We will need help getting all the items up to Resorts and the centerpieces for each table.

 

Now, the best help you can give is to sell tickets for the event or ads for the ad book.  I think I said in my last email if you can get a table of 10 together that would be the best ---maybe some of those people that gave to the Aerobic-thon would want to come.  Like those super generous people that gave $100.00 --- THIS TIME, They'd be giving the same amount of money but be getting something more for it...lunch and entertainment.  

 

Alan and I don't want you to pay for your ticket - we have owed you your dinner prize for a long time so this will be it. 

 

9-17-03

You should see CVS in Margate - they boarded it up but painted OPEN on the plywood. The winds are starting to pick up, but it could  be worse.

 

Are you planning to go to the Margate Bayfest if the storm is not too bad.

 

Had to go over to have my blood 'let' today.  Now we wait for the results.  That should be good for a laugh when we see my cholesterol.  Last time it rose from 375 to 475.

 

Today we had a luncheon [it was a thank you from the Family service in Margate to the volunteers], and we met up with someone else from our high school days.  I 'll tell you when we talk.   It is another bizarro freaky coinkydink.   I was going to call her for an ad.  So what happened.  No seats were assigned but out of 65 people she sat beside me.  I had met her before and we had mutual friends in h.s.

 

oh, and before she sat down [it was noon], I looked out of the window and said to Alan, "Look, we can see the moon." It was ever so faint but the outline was there and it looked like a round cloud.

 

9-18-03

Planning this event  is terribly overwhelming.  Especially because we rushing.   Trying to get everything organized and in place and get a lot done now for the auction;  just in case. You know what I mean  [I can't bear to write the words].  October 15th I go for my follow-up PET / CT scans [high anxiety time]. We hope they are pristine. But there is always that little tiny corner of your mind that tells you never to get over-confident especially when you've been shot down so many times. I just feel the need to do all I can while I have some energy and just be prepared so the event goes off without a hitch.

 

HAHAHAHAAAAAAA.  It did go down.  From 475 to 452! LAUGH IT UP.

 

On the way back from getting my lab results, we stopped at the end of the island to see the water crashing over the rocks.  Well there was more traffic there now, then in the height of the season, July 4th.  We were in a traffic jam which has NEVER happened there before. People waited blocks to see the surf coming over the bulkhead. We parked to take a photo but the damn Wal-Mart disposable camera was a piece of merde & broke. Anyway, the ocean was awesome.  Foam spewing onto the street - huge puff balls of it.

 

People waited blocks to see the surf and foam coming over the bulkhead. They needed police to direct the cars.  We came in and stayed in and made a lemon meringue pie. So all night we were listening to the wind howling and the rain beating down; we seemed to have been spared a big assault. We couldn't even imagine evacuating...what to take and how far to go.  We will work on a plan for the future if it ever comes up again.

 

  9-19-03

Oh, we were so lucky with this storm; the original predictions had us very worried. We vegetated out last night after exhausting ourselves preparing for the worst. SO many items to take inside.  We had no idea what we'd be doing today [I thought we'd be looking for a trailer to l ive in, honestly, the way they scared the bejesus out of us].

 

The hurricane was not as bad as some nor'easters we've had...or even just some thunderstorms.  We were surprised to wake up Friday [and be alive -the way they predicted]---no, what I was going to say was to see there was NO water or puddles in the streets.  People had boats ready.  The sun was shining and we were very thankful not to be in Oz. No clean up to speak of.  It was worse up in Philly - friends lost power and had creeks overflowing.

 

Like you, our summer-only neighbors left stuff out too.  We heard this from most people we know here so it makes it doubly hard to prepare. As much as we don't like moving other's properties, it can become a 'missile' if not secured.

 

We got in the mail today a donation from T-Fal...an 11 piece set of the costly cookware.  And the Spirit of Phila. donated a lunch cruise for 2. This is so amazing to us.

 

9-20-03

Just had to tell you how impressed we both were with how you tailored the letter to The Hilton. And what a great and devoted friend you are.  We are both so  lucky.  Not one of our old-time friends could do what you are doing, can you believe it.  You have got to be the smartest of the lot ---and the most supportive.

 

My face is having severe shocks / pain; it  started about 6 years ago [b.c.] when I got TGN {Trigeminal Neuralgia} AND  it is a terrible shock-like sensation from the ear to the tip of the tongue.  It is like when the dentist drills and hits a nerve. But it happens with every bite of food.  They tried a few medications and they did not work. 

 

 They used a drug they use in kids with epilepsy, Neurotin, and after taking it for a year [which is long for me with any drug], it worked and the shocks subsided.  At the beginning they were so bad that whenever I moved my tongue to eat or talk, it started the episode and I could not talk or eat.   So we were thankful the drug worked; the only other thing they can do is cut the nerve and then your face droops. One neurologist mentioned a gamma knife but I am not in the mood, as you'd expect, for any more surgery.

So I guess this area is a weak spot for me.  When they put me on lipitor once, the shock episodes came  back after a few weeks. I was in misery so the neurologist said to take the neurotin for 1 year steady after the last pain then see him again.  The last pain I had was a while ago. Just one quick stabbing. Yikes. He felt the lipitor could have caused  the TGN since lipitor causes muscle and nerve pain in some unlucky people.  The way the pain is described in the annals is 'the worst pain imaginable' so if a dr. is unfamiliar with cases of it they don't understand how you are suffering.  You program yourself not to eat because every time you move your tongue it is excruciating.

 

We don't know what causes it to start up but  the medicine is so strong it puts me in a stupor and it isnít even working all that well.  What a stressful week.

 

9-21-03

Today food didn't interest me much because with every bite I get the pain.  But we did go for a short walk on the Ocean City boardwalk ------I got a Rita's water ice and shoved spoonfuls of the confection up in my cheek. It did do some numbing and then I started to remember how I did suck ice a lot before I'd try to eat. 

 

There was a car show up there today -all corvette's from 1953 to last year.  Some were works of art, the way they were painted. We met our friend Patty and her son Daniel.  It was quite a pleasant interlude.  This was our era - rock and rollers from way back.

 

It was interesting - I spoke to the widow of the N.J. man who died this summer. She was very sweet ...I needed to find out if a check that came the other day was from her group [and it was].  But before we got to that, we chatted about the entire ordeal he had.  He was diagnosed and died within 8 months.  Once he went into the hospital he never came out.  She wants to help us with the Foundation!  so we got another pair of hands now.

 

9-22-03

Glad to hear you are feeling better; so much is going around.  We have heard this from a few people.  THANK YOU SO MUCH FOR THINKING OF THIS; I APPRECIATE IT MORE THAN YOU KNOW. You are really a sweetheart.

 

D. Trump and H. Mandel have the right idea when they say hand-shaking is barbaric and won't do it.  We have told people we know [now for 1 year & 8 months] to please not hug & kiss us and there are a few   who don't take it seriously.   So we have learned we have to put our arms out.  They think it is fine to kiss Alan but we have to tell them he is the main caregiver and can't get anything or carry any microbes. 

 

Anyway, it was fun walking the boardwalk with you 2 yesterday.  We always feel like we are on vacation when we do things like that.  You have to remember that for most of our life, we drove 3 hours round trip to do something like that. So we are programmed then, that is 'vacation' when we do things like that.

 

I hope you  take the advice you gave me [as far as the meditation and reiki, etc.] - all I keep reading is that we  need that to keep the immune system in an equilibrium which is essential for our health.  We haven't missed a day of meditation since we started [in June].

 

The widow of the man with thymic cancer is something - so soon after his death, she is picking up the pieces. She said she lived thru a nightmare; we can believe it.  Rosalie is still in the hospital [9 weeks] and she is reduced to sleeping on morphine all day.  It is pathetic.

 

I had some bad moments eating today. The pain was so bad, my body actually jerked. Now I see why they call it TIC.  It is a pain like you just can't imagine.  I took lots of acetaminophen and neurotin today.

 

Can't  open my mouth wide to take a bite - that initiates the shock. SO we got hoagies today and I cut mine into small pieces and ate with a fork.  It would be so easy not to eat at all.  It  started about 6 years ago [b.c.] when I got it.  A result of a minor operation - that is another story.  AND  it is a terrible shock-like sensation from the ear to the tip of the tongue.  It is like when the dentist drills and hits a nerve. But it happens with every bite of food.

 

How was it up there; here it was humid.  We are making a lot of letters to go out to get ads and donations.  We now have 3 people helping us.  We'll see how it goes.  Two work full time and I feel bad to see them take their time.  The other is retired.  He does very little.It has been a week and a half and he is still not aggressively getting us anything.

 

9-23-03

You are so right about the scuz bags.  How come they don't get trigeminal neuralgia, for starters, and then some of the other disorders that would keep them so busy they'd stay out of trouble [all those killers, rapists, muggers...need an alternate activity].

 

We have to titrate me up slowly with the drug to 8 pills per day. And in between I take acetaminophen. It is like when the dentist drills and hits a nerve. But it happens with every bite of food and sometimes when I talk. I am so sick of drs. that I am trying not to go with this. 

 

9-24-03

Today we found out why I am still so very tired [and my hair keeps falling out and my cholesterol rose to 452].  My thyroid was burnt so badly it is not working; we got the lab tests interpreted today and I need to take a high dose of synthroid. I have to 8 times the dose I am taking. Seems the hormones stay in your blood stream a long time after the gland stops working so it took a year for the blood test to confirm what I already felt.  Of course they want to put me on a statin for the cholesterol but I am refusing that.

 

The TGN has actually gotten worse; I am trying to be patient since I know it takes a while for the neurotin to build up in the system.  Dinner had me jumping each time the shock ran thru. Literally - it makes me gasp.

 

As for the cause, I have this very strong feeling that it happened at UP of P that time when I had a special 24 hour EEG where they stick electrodes into your temporal lobe.  It was 1996.  We were trying to find out why I had vasomotor disturbances for 18 years [intense heat from the neck up - they couldn't be hot flashes since I've had them for 18 years].  The  neurologist, Jacqueline French did the left side and it was painless [as she said it should be].  The right side started to bleed and swell up and the pain was so excruciatingly bad, I was passing out.  Alan witnessed the entire procedure.

 

Soon after the study I started getting these episodes - it feels like a dentist drill hitting the nerve and each one throws me for a loop. It is in my cheek and it is like a searing lightening-bolt shock, with someone pinching you inside the cheek, to boot.    At a restaurant, all I could eat was a milkshake and it was very soothing. It is not pretty. You program yourself not to eat because every time you move your tongue it is excruciating. so I have become anorexic; actually I get fearful every time I need a meal. cold numbs the tgn, so I suck ice before I eat. the shocks really throw me for a loop. now as they get worse, it is also a little bit of someone stabbing you and holding a live wire in your mouth. 

 

What I think happened was scar tissue formed from this dr. butchering me and the scar tissue is sitting on the trigeminal nerve.  The electrode she inserted WAS TO GO into the temporal lobe but she missed by a mile AT FIRST.  So I have this innate feeling that the scar tissue is causing the pressure

 

I had called French several times when It first happened and she said she didn't know what the problem was and she never encountered this before.  Just what you'd expect her to say.

 

One bit of good news.  We got a letter from Gene Wilder today about the luncheon; we don't think he can come but he said we can use his name as an honorary sponsor for our Foundation. We were so impressed how he took the time to write.

 

Tonight Alan was at his zoning board meeting and the Mayor is taking out a half page ad in the Program book.  And we got a great UPS delivery today. Catherine Hickland, an actress on One Life To Live,  donated lipstick from her cosmetic company in a very exquisite tube, which is brushed metal, with a round 'jewel" and the container opens up to be a mirror.  It is listed at 16.50 and she sent 250 tubes [enough for each female guest!].  We hope to have a great gift bag. Now we need to get the bags donated.

 

 I was kind of bored by the reunion and haven't gone to any since.  We had a huge class of 500 and all my classes were with the same 36 kids.  So of course none of them came to the reunion and in essence I was in a room of strangers.

 

We got several emails from around the world of people still praying for me so that is a big boost.  We are totally grateful for how people have rallied together to help.  We are actually pulling this thing off.  Sometimes I surprise myself.

 

Ashes to ashes

dust to dust

do it today

before you rust!

 

9-25-03

That is one of the reasons I don't like to fly anymore - with the recycled air, whatever someone has in the back of the plane gets to those in the front. After every flight I'd have a cold or something.

 

It sounds like you have the right holiday planned - we agree with your concept.  The holiday is to be with good friends, as well as family.  Does your brother have a family over there with him? 

 

We haven't been up to Phila. for the holidays in 2 years because I was just not up to it but we are planning to go to our dear friends, Bonnie and Rich's house in Rydal, PA.   They do it for 2 nights...30 people per night.  And for Passover, too.  It is wonderful.  Our nephew Adam has a ball there.  A lot of young adults and happiness.

 

Rich does it much differently.  He outdid himself with the Seder 'service'  one year.He ripens with age  We roar and laugh all thru it; he is  so quick and clever ---like a Steve Martin or Billy Crystal.  When it got to the 10 plagues in Egypt, a CATTLE was listed as a plague.  SO he read it as Mad Cow Disease.  Then there was a page with 20 lines of Rabbis' names so he read it "and a bunch of rabbis said."  Rich will had an intestinal joke once in a while [he is a g.i. doc].  It was wonderful to look over and see Adam smiling and laughing.   I think we were ready to eat in 10 minutes; Rich got hungry and said the reading was done.  Ironically, their last name is Moses!

 

9-26-03

The cholesterol problem, which I don't 'feel', has to take a backseat to the problem causing me the most pain, this trigeminal neuralgia.  That needs fixing pronto.  I can't eat without shocks in every bite.

 

The problem with the lipids 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.  My first cholesterol was in 1966 [they didn't do much testing before that].  It was 375 so here I am 37 years later and it is the same [the only reason it rose this time is my thyroid was burnt and is no longer working].

 

For decades I ate cardboard -the low fat and no cholesterol diet.  A lot of good it did me! right? I didn't do this to lose weight.  I have always been underweight - until marrying the Prince, I was 40 pounds underweight.  I eat to live ---the opposite.  I never ate as a child as was always 40 pounds underweight.  My father smoked in the house and in the 50's they would never have known how that is 'child abuse.'  But I was allergic and couldn't swallow if I was in smoke and at the dinner table he'd blow smoke rings across at me. I didn't get the heart attack they promised me but it didn't stop cancer. 

 

As for 'thee diet' ---I know it by heart.   One Alan and I wrote a book on how to lower your cholesterol [what an embarrassment - we got it published but my cholesterol never went down].  Anyway, it was serialized in 17 parts in my professional journal [ADVANCE for medical technologists] and then it was published on a CD-rom with one of Alan's books. I can send you the articles.  You wouldn't believe how many egg yolks I threw down the drain over 20 years.

 

As for the gym - that is where the treatment lies - we do go three times a week...and the other days we do something [ride a bike, walk, etc.].  We have always done exercise and I believe that is what has saved me. I did tell you we have black belts in tae kwon do, didn't I?

 

All your suggestions are the great.  We are way ahead of you.  We each have a trainer who sets us up on an individual program based on our health and a lot of other variables.  She really knows our bodies and limits.  She teaches us how to use the instruments properly and which weights are acceptable. 

 

Everyone NEEDS a cushion of poundage we learned from all of this ...I never know when I'll need it so I don't want to be too thin again.  The body has to be ready for any illness assault that comes to it..  What a waste!  I may not have gotten my father's genes [he had a heart attack at 45], but my mother's [lymphoma].  What a screwy turnaround.

 

Anyway,  I can't take the cholesterol medicine, each one causes a different side affect.

  

As for Atkins' - once we tried it ---NOT to lose weight but to lower my cholesterol.  It took a month to change over the pantry and a week ahead to cook food stocks.  We were on it a week; we each lost 6 pounds [which I didn't have to lose]. BUT, I was so bored by the diet I was miserable.  I absolutely hated it and ultimately we found out it can be very bad for your kidneys.

 

I have tried everything.  Once I took red rice yeast to lower cholesterol.  It was horrible.  I got trigeminal neuralgia in my right cheek - horrible shock waves every time I tried to talk or eat.  SO THEN WE LOOKED IT UP instead of before taking it first.  It has the same substance that is in the statin drugs and I had the same reaction when I took those - mevacor, lipator, etc.

 

A fellow professor that taught with me at the college wrote me that he found that high cholesterol levels are part of the body's defenses  against a number of common ailments.   He said, "Your high levels are what I now  see as the long-term defense against thymic cancer.  Yet another reason  why those levels should not be brought down."

 

My personal theory with cholesterol is it is a marketing ploy on the pharmaceutical companies that make the lipid-lowering drugs since they keep lowering the range of normal and more peooople have to take the drugs. Now normal is way below 200 and each week a news story comes out that they want another faction in the population to take it - all women [prevent s breast cancer], Aids patients, and now we read diabetics. They are so greedy - they just want to keep selling pills.

 

This has been a life long battle and now I just am not interested in trying to fix it anymore.  I have ignored way too many hot fudge sundaes for the sake of my arteries.  The thincs group has a lot to say on this [did you see their website].

 

We heard from Trump Taj Mahal yesterday, coincidentally.  They are taking out a one page ad.  They have been hard to get into. SO that was another surprise.

 

I know you will be busy, but if you think of it, could you please give those who know us the heads up not to kiss or hug us ---there is some bad cold/flu going around and I can't take a chance of catching it [I already have a cough and any more swelling would kill me].  Much as this is a period when I'd love to be hugged, there is nothing there to fight an infection with. 

 

I really think the patient and their family in their home,  need a designated helper, at another location,  to tell the story over and over.  Especially as in our case, the sage was upsetting, as we heard it in our ears each time. 

 

9-27-03

You are right about a beach vacation for the family - it is the memories the children will have in later years that are so vital.  I still remember my Grandmother taking me in the ocean way back in the 50's.  And coming out of the water with tar on our feet!!!!!!  The love of the shore started there, I suppose. You are such wonderful parents to try to do things that your children are interested in.  That is what we try to do with our nephew - find things he wants to do. It is a challenge with that generation but it is possible.

 

9-28-03

 My mother had cobalt treatment in 1972 and it killed her.  They over-radiated her and the beam burnt a hole in one of her major abdominal arties and she bled to death; as fast as they put the blood in, it came out.  She was only 49. I almost didn't get radiation last summer because of all of this; they assured me it is different now.

 

Well, we did not get good news today.  In Conn., Rosalie died.  She had a nightmare of a year and I  know she wanted it to be over already and not live that way.  She was in the hospital 9 weeks, 4 kidney operations, and her back killed her from laying on it that long.  She has been on morphine almost a year with all its horrible intestinal side affects. It is too awful to recap it all.  Her funeral will be in Bryn Mawr THurs. at John Newman church [is that where Camille's was?]. 

 

Another freaky thing - we have a yucca out front that should not be blooming now; the season is done.  We got the call about Rosalie, went out front, and a stalk of bell-like white flowers is about to open ---it is 18 inches high, the spike, and was not there yesterday.  Angels can do special things.  Do you think she is talking to us?

 

At a restaurant, all I could eat was a milkshake and it was  soothing. .. it is not pretty. You program yourself not to eat because every time you move your tongue it is excruciating.  So I have to be careful not to become anorexic; actually I get fearful every time I need a meal and can't wait till its over.   Cold numbs the tgn, so I suck ice before I eat.  I have patches too with lidocaine. And a mouthwash that numbs for about 3 seconds.

 

9-30-03

Your philosophy of life is the same as ours. We are here for a blink in comparison to the span of time.  We developed it when our parents died and have no regrets because we feel we have, as much as possible, gotten it all in. 

 

Thank you for volunteering to help us.  Right now we are trying to sell the tickets [Resorts will make tables of 10] and get unique auction items.  Today Paul Moriarity called and said he'd give the high bidder a tour for 2 at CBS studios.  He is the greatest and a lot of fun.  This is so rewarding - people are terrific. 

 

Well, if the synthroid works, and my cholesterol does drop, it would go to 375 ------which seems to be normal for me but not for the medical world. My level has been 375 for 35 years.  Since 1966.  Never varied - 'they' always promised me the big heart attack. In fact today, my radiation oncologist called and said he got a copy of my labs and for me to be walking around with that level is dangerous. 

 

The auction item that came today is from Ray Romano!!!!!! He sent a photo of the cast and each autographed it.

 

The trigeminal neuralgia is really no better; the neurontin takes months to kick in sometimes.  I force myself to eat and am so relieved when I am done.  If I don't move my tongue [but keep it in the floor of my mouth], the shocks are less intense.  That is a good one! 

 

Rosalie and I talked deeply the last year...and often.  I found out she was in a Woody Allen movie one time, that was the good stuff. She often said she didn't know if all the chemo treatments she was getting were worth it. And she said all of the other things too [that we have in our living wills] . Where is Kevorkian when you need him?

 

 All my fat is on the inside. It has been this way for 37 years [it could be longer but they didn't do blood tests on teenagers in the early 60's. My first test was 375 but then the normal value [whatever that means was 325].  Very interesting that as they have developed lipid-lowering drugs [the statins - which I have serious problems with],  'they' keep lowering the range of normal...so more people have to take them.  The greedy pharmaceutical industry. Don't get me started .  I belong to this international group of medical types [the founder is a Swedish Dr. who wrote 'the cholesterol myth'] who follow this train of thought.  Take a look at their site when you have time:

 

www.THINCS.org 

 

10-1-03

 I am doing ok so far [the meditation and tapes we have are a major help] - so I can wait till next week. Someone said that the reason God gave me the trigeminal neuralgia back is to take my mind off of the scans.  Right now, the acute pain it causes is my only focus so maybe they are right.  I just have to build up to the dose of medicine I need to calm the nerve spasms. It takes a few months, from past experience.  I am thinking of trying acupuncture Friday. Never did it for this before.

 

Ironically, my dr. said yesterday that because I am immunosuppressed from it all, he thinks my latest attack may be of viral origin [like my shingles last January].  This time, the pain - shocks are not mild but pretty excruciating.  It takes a while for the meds to work.

 

If the timing is right, we would be delighted to meet you next week.  We are trying to keep real busy until the 15th.  In fact, next week we scheduled quite a bit of activities - like, Thursday is the busiest.  We were asked if we'd help out at the  Family Service [on Jerome Ave.] on Thursday [they make baskets of food for needy people] so we will be there.  That is the same day as when Manna makes meals for the sick - sometimes we cook with the chef, other times we package.  We have met so many wonderful people.

 

I have learned that you have to love yourself for who you are and what you want to do.  You can't stop the brain from thinking but you can channel it.  That is why we started meditating and it makes a difference.  It breaks the stress for a while so you can step back, and make better decisions.   Seashore Healing arts got us started [Kathy Smith, the owner, is an expert].I sound like a Jehovah's witness lately.

 

I called Trump, of course [I DO HAVE a name] and confirmed the buffet and entertainment coupon.  We got there today and it was closed!!!!!!  I hate when that happens.  We went upstairs to another restaurant with Gail and John.  We did have a nice time anyway even though they wouldn't honor any part of the coupon.  The food was good.  Gail is in the middle of her chemo treatments and in a month or so needs the double mastectomy.   Her spirits are good; she thanked me for making her laugh. So I felt like I accomplished something - those old Sliding Billy genes in me.

 

Camille's obit was in the Inquirer, I heard.  Today I saw her daughter in front of our house and gave our condolences.  She had her new 7 week old baby with her [at least her mother got to see it].     We had a nice chat. Her husband talked to Alan about that 'manly' object in our garage - the motorcycle.  He has one too!  Bobby is so distraught he sleeps with her ashes.

 

10-2-03

Today Larry Hagman sent us a signed photo and a signed script from Dallas to auction off.  Truly becoming a celebrity auction.    There is so much to do - wrapping some of the items, making descriptions to put besides each, selling tickets and ads for the adbook.

 

10-3-03

Today I went to see someone in Ventnor for acupuncture. It was almost painless - I couldn't see the needles but they were around my ear and neck and shoulder, Alan said.  They stay in for 20 minutes, you have to lay still, be calm and he keeps heat on the area. Where the trigeminal nerve is, there was some numbness so we called him back into the room.  Then his assistant massages with herbal oils. The numbness wore off quickly.   There is no real relief, I have to report.  Dinner was 4 hours afterwards and the pain was worse.  I had made a Chinese dish - Alan surprised me with a package of rice noodles so I made a sauce [they were not easy to eat for me].    Breakfast was easier to eat, before this. I probably won't go back.

 

I do have some 'miracle mouthwashes' with lidocaine, etc. but the relief is short lived

 

We are here for a blink in comparison to the span of time.  We developed this theory when our parents died young and have no regrets because we feel we have, as much as possible, gotten it all in. 

 

Sometimes we just have to listen to our bodies and rest.  Being a couch potato once in a while isn't to bad.  Like you, I try to do various activities, but then I get so tired.

 

I absolutely hate when someone tells me they are tired and all they did is shop all day and play bridge.  There is no way to describe the deep fatigue that overcomes us.  I try to tell the 'stupids' that it is as if you have anesthesia for an operation and the after affects and an overdose of pain killers.  They will never get it so half the times I don't even try anymore.  It is  a 'very alone' feeling.  I can't stand when people minimize what I have [some compare their little colds and how they feel to what I have]. 

 

10-4-03

I am so sorry to read of your health problems.   Believe me, when I read 'I would have happily died' I know how you felt.  If I knew I'd have to have this pain in my face forever, I'd call it quits.  The cancer surgeries didn't hurt this much. Chronic pain can be debilitating in so many ways. It is only someone who has had similar that truly understands; it is comforting to have your support but not at the expense that you had the same type of shocks. It is a miracle that the antidepressants worked. 

 

Thank you for the compliment.  I don't know how strong I am.  Sometimes I just don't let my mind think of the sick me.   'B.C.',   I was like the  Eveready bunny, people said, often.  This last year and 9 months [but who's counting] has made me feel out of it often and like I am on one of those moving sidewalks in an airport. 

 

I just ordered a cake for Alan's birthday - it is the same night as his planning board meeting [10-22] so I am taking it over there to surprise him afterwards. He can share it with his friends there. If you want to come over there too, you are more than welcome [we'll have an idea closer to then what time the meeting will end].

 

Thanks again to you both for hanging in there with me...that's how I get through it.  Everyone we know offers something different and it all helps.  Add in a dose of humor and hope and it is a good recipe.  We appreciate the prayers the most; and you have ours always [we went to a healing service and said your name].  That has to be the key ingredient for us all.  Other than that, there isn't anything to do but wait it out until the meds kick in but thank you from the bottom of my heart for offering.  The trigeminal is acute pain but a benign condition so that helps mentally.  Anything benign can be dealt with. My new motto but the way some people act, you'd never know it.  One person has been whining to us about his cold for 2 weeks! I'd kill to only have a cold. 

 

The rest of the day was paperwork - we sent letters to Jay Leno [fat chance] and Larry David.  Everyone is always telling ALan how he looks like him so we sent him some photos and ALan wrote the funniest letter. It takes hours to get a package ready - we put in the newsletter and board of directors,etc.

 

10-5-03

We got your message when we got in - we were meeting with Grover Silcox [who will be the auctioneer on April 18th].  He had told us a while ago that he'd be in Atlantic City this morning so we could go over some of the details with him for the big day.  He is on Fox 29 and a few of the reporters were with him - Gerald Kolpain, Steve Keeley, and Jennifer [I forget].  There was an Alzheimer's walk on the boardwalk and they all help. 

 

Alan and I have learned a lot from the Moses and believe the idea of the holy days is about being with loved ones, not being centered around being in a particular building.  Now we find that being with special people on those holidays is what we really want to do

 

Now for a project ALan and I would like to start is to incorporate into the Foundation newsletter, first hand stories of the patients of these cancers ---to publish an article each newsletter.  Also we'd like to have the doctors write articles about this.  We are going to send a letter to the board to see if they will do this.  We know how busy these people are but it would be great if they could share some information to all.

 

The walks on the beach & just 'being' in such a picturesque environment do so much for the soul.  It makes me want nothing else but more of the same.  And of course, good health.

 

That is wonderful that your mother-in-law is 90.  Where was the party; Is she healthy and independent. It is incredible how some bodies go on and on, unaffected by disease and aging.  You have to tell me what her secret is. We'll bottle it.

 

Thank you from the bottom of my heart for offering.  It is wonderful that you have come into our lives.  Your offers are such a comfort, just reading them [more than some families have offered].

 

10-6-03

Our plans this week - you ask.  Today we stayed in as the holiday dictates and didn't eat for 19 hours!  Then I had to for taking my meds.  We were invited over to Sandy's house on 36th for her annual Break The Fast dinner. We met via a mutual friend last March.  She had just finished radiation and chemo for Lymphoma [she is 65] and was at a loss for how bad the side affects were. I was able to tell her that the horrible burns were normal [is that an oxymoron] and we became close.  I am going to miss her when she goes back to FL. for the winter.  Damn that Ponce de Leon.

 

 It was wonderful [I took a lot of medicine so I could eat some].  She had ordered a ton of food from Downbeach.  I made a challah and a chocolate whipped cream layer cake that were big hits.  And we met a bunch of new people [candidates one and all for the luncheon of course].  Some of the couples have lived in Margate, Ventnor, and Longport forever. It always astounds us how many full time people are here.  She had neighbors we hadn't even met yet. The other nice part is she is right on the beach and it was balmy enough to sit on her deck and eat outside.  It was almost a full moon and the ocean was 'lit' up. The sky was clear and we could see the casino lights.  And the surf was loud so it was a lovely start to the new year.

 

Tomorrow we go to Boscov's by day and at night I go to Adria Light for a special session to teach me how to handle the tests next week.  Wednesday we are meeting friends before they go back to FL. and then to the gym; Thursday we volunteered to help make food packages for the needy at the  Family Service and Alan is going to meet a Master in Egg Harbor Town. who teaches ancient sword forms [something he always wanted to learn]. Hope to get most of this in!

 

As Larry in Texas always tells me, the test results [whether scans or blood] are only numbers on a scorecard.  There are so many other factors.  So just enjoy yourself.  You are a result of hundreds of people's genes, not just your father.  The genes get reshuffled so many times - like a deck of cards - and you many not get the same problems he has.

 

We see it with all our friends who still have parents.  You want to remember them as they were when you were growing up; but there is that reality of life.  I never had to deal with that since my parents died in the prime of their lives at 45 and 49.  I often think about that though.   Your father had all the cardiovascular problems, right?  And now he has Parkinson's...is there any relation...like with the meds he took for the other?

 

 Dealing with the side affects are the worst.  I still take prevacid for the burns in the esophagus - only need it now if I eat something spicy.  Like no more pepperoni pizza.  And no pepper. I had gotten a steak sandwich and a few hours later, my chest and back were on fire.  This is a year after the radiation and there are still plagues to deal with. I drink Penta water for my voice. It is a hydrating water. It helps a small degree. The natural food store carries it.

 

My lab results for the thyroid came back abnormal - it took one year to show up though I had clinical symptoms a year ago.  The hormones stay in the body for a while but when it stops making them